Monday, March 10, 2003 9:39 PM CST

I put some pictures of our trip to Australia and New Zealand on the photo page. I probably won't leave them there for long because this is Matthew's web page and it should have pictures of Matthew. I couldn't get them to all be straight, so I apologize for that.

If you are like me, you don't know if it is spring or winter. After the beautiful (although windy) warm day on Saturday, winter came rushing in again. I am tired of the dreary, cold days of winter...I have noticed that it is light on the drive home from work now, so maybe spring is just around the corner.

I really am dreading the end of this month (sigh). Matthew had his Bone Marrow Transplant on March 26 last year. His birthday is (NOT WAS) on March 29 and three years ago, on March 31 he was diagnosed with leukemia. That date is still so vivid in my mind. Never in a thousand years did I imagine that my child would have leukemia. And now, almost three year later, it is hard to believe all that has happened in the last three years.

My days are a constant series of ups and downs. I still miss Matthew sooooo much. Christopher was home last week for spring break, which was good, but tonight Dirk took him back down to Washington University - so he is gone again.

Christopher's surgery on his shoulder went well on Friday. They took him into surgery at about 4:00 pm and the doctor didn't come out to talk to us until about 7:00 pm. It was such a long three hours. I know that I was probably more anxious than most parents because of all we went through with Matthew, but luckily everything went okay.

Christopher ended up having to spend the night in the hospital Friday night because his surgery was so late in the day. It felt so strange sitting around a hospital room again with one of my kids in the bed. Christopher even said "I bet you didn't think you would have one of your kids spend the night in the hospital again, did you?" Luckily it was a different hospital - I don't know if I could have handled it if it were the same hospital....

Christopher went back to the surgeon for a follow-up visit today. He has had to keep his arm very still and in a sling since the surgery. He had a large bandage on his shoulder that we were not to remove and had this thing called a cryo cuff on his shoulder. It was kind of neat - you fill this little cooler with ice water and it has a tube that connects to a tube on the cuff that Christopher has on his shoulder. You hold the cooler up to drain the ice water into the cuff so that it is kind of like having an ice bag there. Then, several hours later, when the water is warm, you put the cooler on the ground and drain the water back into the cooler, shake it up to mix it with the ice water already in the cooler, then hold it up and let the new ice water drain into the cuff again.

The surgeon was able to go in at the same place as the original incision, so he doesn't have two, and he said that the original repair of the shoulder looked good, but the subscapular muscle had torn away from the bone. The surgeon had to reattach it with two screws into the bone. He now has five screws in his shoulder - we were kidding him that now he would probably set off the metal detectors at the airport!!!

Dirk is finally getting over the cold that he came down with when we got back from our trip. He and his mom were both sick when they got home. Luckily none of us got sick while on the trip. Julie and Brad are doing well. We talk to them at least several times a week. Julie had several job interviews last week, but has not heard anything about them yet. We plan to go down to Atlanta to visit them in the next few weeks.

Friday, February 28, 2003 9:00 PM CST

I know it has been a long time since I have updated Matthew’s site, but we have been out of the country. We got home from our three-week vacation to New Zealand and Australia yesterday afternoon. We had a wonderful time, but were ready to come home. We lost a day when we went over there, so we gained it back coming home. Last night, when we finally got to bed at about 10 pm, Dirk had figured that we had been up since 1:00 pm the previous day - it had been about 33 hours since we had slept (unless you consider the 1 ½ - 2-hour catnap on the plane from Sydney to Los Angeles). It was hard to know what day it was because we were a day ahead. For example, when it was Valentine’s Day here, it was February 15 there.

We got to meet several e-mail friends of mine while we were gone. We met with Harri and Tim in Auckland. They lost their little girl, Lowri, in September. We had a good visit over coffee at a sidewalk café. It was great to meet them and to be able to match faces with names. Then in Melbourne, another Internet friend, Liz, met us at the ship and took us to her house for brunch. We got to meet her family and also her dad and her in-laws. They were so gracious and took us to see the sights of Melbourne, and then they took us back to the ship at the end of the day and waved us off. It was such fun to meet both families. Thank you.

Dirk had to keep in touch with work, so in each city (and once on the ship) we stopped by an Internet café for him to check in. I am not aware of them here in St. Louis, but they are all over the cities in New Zealand and Australia. Usually you can get on the computer for about $5 (Australian/New Zealand) dollars, or about $3 US, for an hour. We went into one in Christchurch, New Zealand, and there were quite a few young men on computers playing the Internet game Matthew always played. The screens looked so familiar and it brought back a lot of memories of Matthew upstairs playing on the computer. I almost went up to one of them and asked if they ever played the game with Matthew (Zofran) or knew of him, but I was afraid I would start to cry and they would think I was crazy.

While it was good to get away from home and all of the reminders of Matthew, when I got home, the reality that he is gone came crashing down on me. I have been crying off and on all day. I know that once I get back to work, there will be things to keep my mind busy, but today I was home alone and it was so hard. There is such a huge hole in my heart.

We stopped by the cemetery on the way home from the airport, and I felt guilty that we had left Matthew here. I know that he was there in our hearts and minds, but that just isn’t the same. It had snowed while we were gone and the grave blanket was covered with snow – it looked so cold and dreary at the cemetery. Even though I know that “Matthew” is not there, the stones looked so bare sticking up out of the snow – it was sad. I miss him so much.

I missed talking to Julie and Christopher so much. I tried to keep them updated from several ports. I felt helpless, though, when Christopher e-mailed me about needing surgery on his shoulder again. While we were gone, he went to see the surgeon who did the original surgery on his shoulder and she wanted him to have surgery as soon as possible. Here we are, half way around the world, and feeling helpless. An MRI showed that his rotator cuff muscle has ruptured (following the previous surgery) and the longer it goes without being repaired, the chance is that it may deteriorate and not be able to be reattached. Luckily, between Christopher and Dr. Hendershot (whom I work for) he is set up for surgery next Friday by one of the orthopedic surgeons for the Rams football team. They will go in and look to see if they can repair the muscle, and if they can’t, they will “transplant” part of the pectoral muscle (chest) to repair the shoulder. It will probably be a 2 – 4 hour operation.

Christopher will be home tomorrow for the week – spring break. It will be good to have him home. In a few weeks, we will go to Atlanta again to visit Julie and Brad. They have been house hunting, so we may be looking at houses with them. I can't wait to see them. I miss having Julie and Brad around so much.

I really appreciate everyone who continues to check back on us and sign Matthew's Guestbook. It helps me get through some of the really rough days. Please continue to keep our family in your prayers.

I know this is already long, but I want to close with a poem that was posted in Matthew’s Guestbook that I just reread.

Monday, February 3, 2003 9:38 PM CST

I am sorry it has taken me a while to update. Things have been going okay. Not good and not bad, just okay. I still miss Matthew so much, but I am trying to get through the days one at a time. Christmas and Thanksgiving are behind us – the first without Matthew. I cannot imagine next year not being able to say “Last year Matthew was doing… “ because there will be no “last year” with Matthew.

Dreary January and February are upon us. I always did hate these two months, but this year they are even more unbearable. I am looking forward to our trip to Australia and New Zealand. It will be so nice to get away from all the reminders of Matthew, but I know that we will have to come home again.

I know that I have mentioned the online gaming community, FLF, which Matthew was involved in, and all the support and encouragement that they gave him when he was struggling with leukemia. Several days before he died, we were informed of a letter that he posted to that group after he relapsed the last time in May 2002. His post prompted numerous responses and well wishes to him. He kept them updated on his condition until he could no longer post – 2 weeks before he died.

The following is the goodbye letter that Matthew posted to the FLF community after he relapsed. I am amazed at the strength that he had and the courage to share his condition with his gaming friends. He went by the name, Zofran, which is the name of a medicine that is given to cancer patients for nausea from the chemotherapy. As you can see, punctuation and spelling are not the first priority in his letter…
------------------------------------------------------------

Posted by Zofran on 06-01-2002 9:46 PM:

goodbye
this is really hard to post this, but id rather do it this way thanfor everyone to wonder where i went...

first off, im not saying goodbye willingly to FLF like others, but im forced to leave FLF... and life.

i was admitted to the hospital on wednesday with a high fever, and feeling terrible, at first we just thought it was an infection that could be treated with some antibiotics, but when they drew blood, they found leukemia cells in it again. Since ive already had the 'last resort' pretty much in the fight for cancer, there isnt much left they can do, and the options left have very slim results, over the next few days the doctors and myself will make a decision based on how advanced my relapse is, weather or not to re-try a transplant (which i wont go thru that h*** again) or a few other things, such as make me as comfutable at my house as i can (in this case i might be able to talk to some of you again) or to try different chemo to extend my life by maybe a few months.
If i live long enuf, i will tell you my decision and weather or not i will speak to you all again. 2 and a half years stuggling with this, i cant do it anymore.

Now i must say how sorry i am for you all to hear this, most of my closer online friends know i dont mess around with things like this, and know this is the real deal. So i thank you all for what you have done, those of you that have treated me well, and listen to me even tho i am misunderstood alot of the time.

Also like to thank a few individual people for their help, skizo, sq, most of TEATIME.

i am very proud of what i have tried to give to the FLF community, and proud to be part of the Official dev team since 1.2, currently the #1 clans in USA and in Europe, Clan hi- and Jeelisko (keep winning guys )

thanks to Adrian, David, Deimos, Guiver, Marybeth and the various other members who have come and gone in the FLF dev team who have made this MOD for us, and personally for me to pass the hard times.

also im stickying this so everyone knows my loyalty to FLF and my FLF friends - i didnt leave u on my own occourd

hopfully i can make it home and talk to u all on irc, but right now its not looking to great, im not giving up without a fight
__________________
[ Jeelisko ][ hi ][ Zofran ]
Just kidding
Takin it easy... drifting away...
------------------------------------------------------------

I have to admit that every time I read this goodbye letter I find myself admiring him more and more. He was an amazing young man. For a 16-year-old to face such a battle that he ultimately lost is more than I can imagine. He had such courage and he fought so hard for so long. We are very proud of him.

The following is the second post that Matthew made to the FLF group. I am putting it here so that you can see that he wasn’t afraid to die – this is a comfort to me.
------------------------------------------------------------

Posted by Zofran on 06-06-2002 1:19 PM:

hey guys, just a have a few moments to respond.
first off thanks SQ for taking the time to contact my family, and you can try my home phone after 8 cst, before then, everyone is at the hospital with me.

now on with health news, after looking at about 8 diff new age cancer drugs for situations like this, i didnt meet any of their criteiria, nor am i able to try to get back into remishin, nor have another the opertunity to have another BMT, my body just cant take anymore more, after all, chemo is poison.

i fought hard and long, and even when i come to find its my turn to go, im not afraid at all... thank you all for you time in FLF, and some of you CS's that remember me, and everyone else.

the docs are guessing i have about 2 weeks left, hopefully ill be able to get back home.

also i will ask my mom to send a message, email/snailmail so he can relay when i have passed.

thank you all again, and pease dont forget me

Matt "Zofran" Hallemeier
__________________
[ Jeelisko ][ hi ][ Zofran ]
Just kidding
Takin it easy... drifting away...
------------------------------------------------------------

After his death, the FLF community started a new posting where members could send their condolences. Not only did it receive messages from the FLF community, but from other gaming communities a well. I was in tears as I read the kind words that these gamers sent to someone they had never personally met.

Well, that is all I have to update for now. Please continue to stop by to check on us and sign Matthew’s guest book. These kind notes mean a lot to us and he would be so pleased to know that he has not been forgotten. Please remember us in your prayers.

Please continue to keep Alexandria's family in your prayers.

Tuesday, January 21, 2003 at 10:21 PM (CST)

Tomorrow will be six months since our beloved Matthew left us…On one hand, I think “where has the time gone,” but on the other hand I feel like he has been gone forever. The memories are still so vivid of those last few days – I keep waiting for them to fade, even just a little. I am sure that in time, the good memories will replace the painful ones that are so deeply etched in my mind. At least I hope so….

Each time that I check Matthew’s web page, I am amazed at the number of visitors who continue to check in on us. I think that visitors are not a very good word for you – it should be friends, even though I have never met most of you. I really enjoy reading the entries that you leave in the guest book. You will never know how much it boosts my spirits when I read the kind thoughts that are written. Please take a minute to sign Matthew’s guest book when you stop by – it means a lot to us.

Occasionally I see a post from a person who has downloaded the Internet game that Matthew played, Front Line Force (FLF), and came across their dedication to Matthew. These gamers were there for Matthew when he needed friends the most and I will always be grateful to them for supporting Matthew throughout his battle with leukemia – especially after he relapsed the second time in May 2002. Thank you.

We are looking forward to our get away to Australia and New Zealand that is fast approaching. The weather has been so COLD here in St. Louis and it is supposed to get colder the next few days. I hate winter with a passion, and it will be late summer/fall “down under.” It will be good to get away from home and the constant reminders of Matthew. I know that I will still take him with me, but I hope that I can find a space to “tuck him away” in my mind for most of the trip. We will stay two days in Auckland and then cruise to several ports - Wellington, NZ; Christchurch, NZ; Dunedin, NZ; Hobart, Tasmania; and Melbourne along with some days at sea. We will end up in Sydney for two days before flying home. I am looking forward to hopefully meeting one of my e-mail friends in Melbourne – Liz – and her precious family.

Julie is adjusting to living in Atlanta with Brad. His family is close by so they are taking good care of her when Brad is out of town for business. Christopher was home Saturday night and then again last night for dinner. I enjoy having someone to cook for other than Dirk and I. (Boy does that sound like an open invitation….)

Please continue to keep Alexandria H in your prayers. She is back in the hospital with fevers. Her web site is Alexandrias Angels.

The following is a poem I came across on another caringbridge site. It describes a lot of the feelings I have.


REMEMBERING
Go ahead and mention my child
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent
Pretending it doesn't exist.
I'd rather you'd mention my child
Knowing that he has been missed.
You ask me how I'm doing
I say "Pretty good" or "Fine."
But healing is something on-going
I feel it will take a lifetime.

Elizabeth Dent

Thanks again for continuing to remember us in your prayers. We love you all.

Monday, January 13, 2003 at 09:36 PM (CST)

Wow, I cannot believe that we have had over 100,000 visitors. Thank you all for continuing to keep us in your thoughts and prayers. They mean so much to us.

Julie and Brad are back in Atlanta and Christopher went back to school Saturday, so it is just Dirk and I here again. The house seems so quiet. I miss having them around....I think that we are doing okay, though.

I went by the cemetary this morning before work to visit Matthew. I was going to take down the little Christmas tree that we had put up but I just wasn't ready... Maybe another week. I was surprised that someone had left several roses there - a red one on top of the stone, and a white one on one side of the stone and a pink one on the other. Whomever you are, this means so much to me...to know that you care enough to do this - Thank you.

We had some heartbreaking news this weekend. Alexandria H, my friend Alison's daughter who has been fighting leukemia for almost 2 1/2 years is not doing well. She was having headaches and changes in her vision Saturday, so Alison and Grant took her down to Children's Hospital. They found that she has lesions on her brain from the leukemia. They brought her home today...Please pray that they can find some comfort in the days ahead. Her website is Alexandria's Angels. Please remember their family in your prayers. They have got to find a cure for this horrible disease. It is taking so many of our precious children.

Sunday, January 05, 2003 at 09:34 PM (CST)

Well, we made it through the holidays. It was very hard. It helped that Julie, Brad, Christopher, and of course Dirk were here. There was a big part of it missing, though, with Matthew being gone.

It started to snow Christmas Eve day at about noon. Since Dirk's mom and dad and my mom were coming over for dinner, we called them and told them to come over as soon as possible before the roads got too bad. We told them to bring a bag in case they had to spend the night. It took them two hours to go a distance that normally takes about 15 minutes! The snow stopped in the early evening and we ended up getting about six inches. It was beautiful. Our parents felt comfortable driving home, so they left at about 10 pm and it took them about 30 - 45 minutes. I was glad that they got home safely.

I was very disappointed that our Christmas Eve services at church were cancelled because of the snow. It is one of my favorite times to go to church...such a special time. I remember last year Matthew and I were sitting in the back seat on the way to church and we were talking about what we were going to do about his relapse. In the back of our minds was the remote possibility that it would be our last Christmas with him, but we thought it was just that - a REMOTE possibility.

Usually I am up until the wee hours of the morninig on Christmas wrapping presents. In fact last year I think Julie and I were up until about 3 am. This year I made a great effort to get it done ahead of time...I did pretty good. We were in bed by midnight.

It was kind of fun Christmas eve. Usually I am the only one who puts things in the stockings, but his year, Brad snuck down and put some things in Julie's stocking and then Julie snuck down and put things in everyone's stocking. We couldn't decide whether to hang Matthew's stocking, or not. It was sad to see it there, but by not hanging it, I felt like we were acting like he never even existed.....I had gotten Dirk a bike and had it hid in Julie's closet upstairs, so Brad helped me carry it down. I already have a bike, so hopefully when the weather gets warm, we can go biking.

Christmas day, after we opened presents at home, we went over to my moms for lunch with my side of the family. We were to be at Dirk's brothers house for dinner at 5 pm. The cemetary is on the way, so we stopped to spend some time with Matthew. The snow had covered the grave blanket I had placed so we shook all the snow off it and put it back down. We also shook the snow off the little Christmas tree. It was so hard to think of him there under all that snow....I know that it is just his physical body, but it was still so hard not to think.......(sigh)

New Year's Eve was hard. Julie and Brad had gone back to Atlanta and Christopher was at a fraternity party and was going to stay all night, so it was just Dirk and I. We rented several movies and finished them at about 11:45 pm. Since we live in an area where fireworks are legal, a lot of the neighbors were shooting them off. You could see them over the tops of the houses from all around. It was hard because both Dirk and I were reminded of the Fourth of July…..That was the last time that Matthew really felt well. We had barbecued and Matthew had made his very hot wings. About the only one who could eat them were Matthew and Grandpa – and Grandpa couldn’t eat much of them. Matthew was having trouble breathing then and had stayed inside because of all of the gunpowder and smoke in the air outside from all the fireworks.

Christopher is home until this weekend, then he will go back down to school. It is going to be so hard to have everyone gone again. It will take a while to get used to it again. The house will be so empty – it is not fair that Matthew won’t be alive for any of 2003!!! I still lay in bed at night thinking about those last few days of Matthew’s life. I think that they will haunt me the rest of my life. There are so many reminders of Matthew in the house. Hopefully it will help getting away when we go to Australia in February.

I want to apologize if I sent a virus to anyone.... I didn’t do it intentionally. I was really stupid and opened a zip file from one of Matthew’s gaming friends that contained the KLEZ virus. I normally don’t open any attachments if there’s nothing written in the e-mail and there is just an attachment.... Even if it says it is from someone I know.... I thought that it was something about Matthew. We had disabled our antivirus software because it was conflicting with something else running on the computer and the virus crept in and infected about 50 files. It even uninstalled our antivirus program and we couldn’t reinstall it until we got rid of the virus....I couldn’t help thinking about how Matthew would be giving me a very hard time for opening an attachment from someone I didn’t know in the first place… Anyway, I figured out how to fix it and I think everything is running okay – including the antivirus program!!!! Someone has entirely too much time on his or her hands to sit around create viruses to infect others computers…. I only have a few people in my address book, so I am sorry if I sent the virus to you. I would never send an attachment without telling you it was there. I learned my lesson the hard way.

I hope that you all had a safe and Happy New Year…. This one has got to be one of the hardest holidays that I have ever had to spend…. I miss Matthew so much…(sigh).

Please continue to keep Alexandria in your prayers. Her web page is Alexandria's Angels

Sunday, December 22, 2002 at 01:06 PM (CST)

Today is a pretty rough day - it was five months ago, July 22, that Matthew left us. The month anniversaries are so hard. This morning when we went to church, I saw the "angel tree." Every year there is a Christmas tree that is set up in the back of the church for people to place angels in memory of loved ones who are gone. It was up last Sunday, but I didn't go to church. Dirk went and hung Matthew's angel ornament on the tree. It is an angel boy who is sitting and holding a dog. We did not have a dog, but Dirk's brother, Dale, and his family had a dog named Georgie who died recently and they have told their sons that Matthew is taking care of Georgie. Anyway, today I saw it on the angel tree at church.......

After church, we went by the cemetary and decorated Matthew's grave. I made a grave blanket of pine branches and tied red bows on it. We laid it on top of Matthew's grave. Then I decorated a little artificial Christmas tree and put it there. I had to really attach the ornaments on good with wire so that they don't blow off. Then I placed a copy of the peom below in a waterproof bag and tied it with a bow around the little bear cub figurine. We found it several months ago and as soon as we saw it we thought of Matthew because we used to call him "Scrappy, the bear cub." We should NOT have to be decorating our son's grave for Christmas.

I am going to try to change the pictures in the photo album and put some from last Christmas. That was such a sad time. Matthew had just relapsed for the first time and we didn't know what was ahead of us. We didn't know if it would be Matthew's last Christmas with us or not. I hope he enjoyed it.

I left the poem here because I really LOVE it. I am amazed at all of the people who thought of me and sent me a copy of it - one even came from Austrailia!!! (Thank you, Liz)

My First Christmas in Heaven

I see the countless Christmas trees
Around the world below
With tiny lights, like Heaven’s stars
Reflecting on the snow.

The sight is so spectacular
Please wipe away the tear
For I am spending Christmas
With Jesus this year.

I hear the many Christmas songs
That people hold so dear
But the sounds of music can’t compare
With the Christmas choir up here.

I have no words to tell you
The joy their voices bring
For it is beyond description
To hear the angels sing.

I know how much you miss me
I see the pain inside you heart
But I am not so far away
We really aren’t apart.

So be happy for me, dear ones
You know I hold you dear
And be glad I’m spending Christmas
With Jesus this year.

I sent you each a special gift,
From my heavenly home above
I sent you each a memory
Of my undying love.

After all, love is a gift
More precious than pure gold
It was always most important
In the stories Jesus told.

Please love and keep each other
As my Father said to do
For I can’t count the blessings
Or love he has for you.

So have a Merry Christmas
And wipe away that tear
Remember I’m spending Christmas
With Jesus Christ this year.

Thanks again for visiting Matthew’s web site. Your prayers and good thoughts mean so much to us. The caringbridge web site is still having a problem with their visitor counter, as you can see. I am a little disappointed, because I am always impressed and feel good when I see how high that visitor number is getting. It was working for a while yesterday, and it was over 94,000!! Matthew would be so happy to see that so many people still remember and think about him. Please sign the guest book when you visit so I know you were here. I hope you have a good Christmas and a safe New Year.

Please continue to remember Alexandria H in your prayers. She was diagnosed with Leukemia (the same type as Matthew) in October, 2000. She relapsed in July, 2002 and had a Bone Marrow Transplant in October, 2002. Unfortunately they have just found out that Alexandri has relapsed. Please say some extra prayers for her. Her website is Alexandria's Angels

Thursday, December 19, 2002 at 09:11 PM (CST)

My First Christmas in Heaven

I see the countless Christmas trees
Around the world below
With tiny lights, like Heaven’s stars
Reflecting on the snow.

The sight is so spectacular
Please wipe away the tear
For I am spending Christmas
With Jesus this year.

I hear the many Christmas songs
That people hold so dear
But the sounds of music can’t compare
With the Christmas choir up here.

I have no words to tell you
The joy their voices bring
For it is beyond description
To hear the angels sing.

I know how much you miss me
I see the pain inside you heart
But I am not so far away
We really aren’t apart.

So be happy for me, dear ones
You know I hold you dear
And be glad I’m spending Christmas
With Jesus this year.

I sent you each a special gift,
From my heavenly home above
I sent you each a memory
Of my undying love.

After all, love is a gift
More precious than pure gold
It was always most important
In the stories Jesus told.

Please love and keep each other
As my Father said to do
For I can’t count the blessings
Or love he has for you.

So have a Merry Christmas
And wipe away that tear
Remember I’m spending Christmas
With Jesus Christ this year.

I hope you enjoy this poem. Several people gave it to me and I have also read it several places. I am not sure who wrote it originally, but I have seen it in many different versions and credited to several different people, including “unknown.” It helps me to read it whenever I start to think about Matthew not being here for Christmas this year. He is in a much better place – and celebrating Jesus’ birthday with him 

This time of the year is more painful than I had ever imagined. I managed to get the Christmas tree up and got most of the decorations done around the house, but it was a long, painful “chore.” I thought about just skipping the tree and decorations this year, but now that they are all done, I am glad I did them. Hopefully it will help to make things seem a little “normal.” Christmas cards are another matter…I just can’t do them this year. I feel bad because I appreciate the cards that I receive but I just can’t mail cards out. I don’t know what to say or how to sign them……Sorry.

Julie and Brad will be here from Atlanta on Monday, Dec. 23. They are going to celebrate Christmas with Brad’s family this weekend in Paducah, Kentucky, then come to St. Louis. It will be so nice to have them home for Christmas. Christopher is done with classes for the semester. Actually he had his last final on Tuesday, but he is working down near school the rest of this week and it is more convenient for him to stay in the fraternity house. He also wants to spend a little time with some of his friends who will be studying abroad next semester.

I have most of my Christmas shopping done. I really didn’t feel like going, but I did manage. It made me feel a little better buying gifts for the family and friends. I guess it is a female thing, but I do feel better when I go shopping - - at least until the bills come rolling in! I am going to take vacation days (yes, I actually have two left!) tomorrow and Monday. The office is closed on Tuesday and Wednesday, so I will have almost a week off. It will be nice since Julie, Brad, and Christopher will be here. Hopefully Dirk will be able to take time off, too. Friday, December 27, is our wedding anniversary. (Yes, Dirk, I did remember the day.) We are getting to be an old married couple – 27 years! I Love You, Dirk. He is much better about remembering dates than I am and is always prepared way in advance. Me, I am a procrastinator and wait until the last minute.

Dirk and I are going to take a long vacation early next year. We are going to Australia and New Zealand with his mom and dad. I am so looking forward to getting away. We will fly into Auckland, NZ and spend two days there. Then we will board a cruise ship and stop at several ports as we work our way around to end up in Sidney, Australia. We spend two days there, and then we fly home. I think that we can both use a break. The last 2 ½ years have been so stressful and difficult. If anyone lives in Australia or New Zealand, let me know if there is anything you would recommend. We just have a day in most ports, but hopefully we can see some sights. We will be in Christchurch, Dunedin, Hobart (Tasmania), Wellington, and Melbourne, in addition to Auckland and Sydney. It will be good to get away from home and all of the painful memories. It has been a long time since we took a vacation…

Thanks again for visiting Matthew’s web site. Your prayers and good thoughts mean so much to us. The caring bridge web site has had a problem with their visitor counter, as you can see. I am a little disappointed, because I am always impressed and feel good when I see how high that visitor number is getting. Matthew would be so happy to see that so many people still remember and think about him. Please sign the guest book when you visit so I know you were here. I hope you have a good Christmas and a safe New Year.

Please say some extra prayers for Alexandria H. She was diagnosed with Leukemia (the same type as Matthew) in October, 2000. She relapsed in July, 2002 and had a Bone Marrow Transplant in October, 2002. Unfortunately they have just found out that Alexandri has relapsed. Please say some extra prayers for her. Her website is Alexandria's Angels

Sunday, December 01, 2002 at 08:01 PM (CST)

I hope that everyone had a good Thanksgiving. I added a picture of Matthew's tombstone. We had a ceremony today where Pastor Arle said a blessing for the stone. It was nice. It was just family and a couple from church who have been a great source of support for Dirk and I. The weather was cold, but sunny. Pastor Arle, as usual, did a wonderful job - very moving and personal. We wanted to do it this weekend while Julie, Brad and Christopher were home for Thanksgiving. I gave Pastor Arle several verses to read. He bagan by reading this verse by Angelo Patri:

Tuesday, November 12, 2002 at 09:36 PM (CST)

Boy, it has been a LONG time since I sat down to update Matthew’s web page. I sat down several times to do it, but didn’t know what to say. I have had several people tell me that I should make Matthew’s Journal into a book, and I thought about it and have been working on doing just that. I don’t know if it will ever be published, or even if anyone is interested in reading it, but I decided that I needed to have it all put down for myself. I am so afraid that I will forget something about Matthew and all that he went through and how brave he was. I want my grandkids and their grandkids to know about him. So, I have been combining what is written here with what I wrote in my own journal and also things I remember about him, and am putting it all together. I need to do this for me….. There are things in my personal journal that I did not feel up to posting here at the time, so everything will be in one place.

Matthew’s tombstone was placed on Halloween (how appropriate?). It is very simple and beautiful. It is a light gray marble with the grain showing. Dirk and I had our names and dates of birth on the stone, also. Matthew’s name and dates of birth/death are in the middle – safe between us. It is so hard to see his name “written in stone.” I thought that it was hard to see it on the temporary marker, but this is so much harder. We are planning to have Pastor Arle have a little ceremony to bless the stone when it can be arranged. Dirk and I had not even thought of it, but Pastor Arle mentioned it. The more we thought about it, the more we liked the idea. When I get a chance to take a picture of the stone, maybe I will put it here.

This past weekend the family all went to Orlando, Florida, for Dirk’s youngest brother, Chris’s, wedding. It was beautiful and the weather was perfect. Dirk and I flew down on Thursday morning. Julie and Brad flew down from Atlanta Thursday afternoon and Christopher flew down Friday. The wedding was Friday night. Julie, Brad and Christopher left on Sunday, and Dirk and I stayed until Monday night. All of Dirk’s brothers and parents were there, so it was nice to all be together. Friday, some of us just hung around the hotel pool. It was so relaxing and the weather was 80 and sunny. We all went to Epcot on Saturday. It was nice to get away from all of the physical reminders of Matthew that are at home (sigh). He would have loved to go.

I really dread the holidays. I try not to think about the fact that Matthew will not be here. Last year, on December 21, Matthew had just relapsed for the first time. We were all tested to see if we were suitable donors for his Bone Marrow Transplant on Christmas Eve Day. We all went to church Christmas Eve, and I think that, in the back of our minds, we were all wondering if it would be Matthew’s last Christmas. Of course, we never thought that it would happen, but this Christmas Matthew will be with Jesus to celebrate his birthday. When I look at pictures of Matthew from last Christmas, he looks so sad. I wonder if he was thinking that it might be his last Christmas with us……….

Thanks for continuing to check in on us and post to his guestbook. It means so much to us to know that you care. Hopefully I can get an update posted sooner the next time.
I added a photo of "Matthew's Tree." My co-workers gave us a gift certificate to a local nursery to buy something in memory of Matthew. It is a red maple. It is beautiful. Thanks, guys!

Wednesday, October 23, 2002 at 04:18 PM (CDT)

I sat down several times in the last day or so to update Matthew’s web page, but I could not finish it. Yesterday was three months since Matthew left us, and the last week or so has been so hard for me. It seems like Matthew is the first thing I think about when I get up in the morning, and the last thing on my mind when I lay down to go to bed at night. I miss him so much. I keep replaying his last few weeks in my mind – was he afraid, was he in pain, was he thinking how unfair it was…. (sigh) …. If I could just get past those last few weeks, I think it would be better. For a while, I thought I was doing okay, then it seemed like everything crashed. It is just not fair – we miss him so much. He has left such a huge hole in our hearts.

We were in Atlanta over the weekend to see Brad and Julie. We had a good visit, but were exhausted when we got home. We were on the go so much of the time. We saw all of the sights, so I guess next time we go we will just have to go to the malls J We went out to eat Friday night with Julie and Brad. Saturday morning we got up and went to the Cyclorama. It was interesting. It is a circular painting of the Battle of Atlanta during the Civil War. There is a three-dimensional scene in front of the painting and you sit on benches in the center and as they turn, you see the whole scene. Then we went to the Coca-Cola Museum. We got to taste all the different coke products from all over the world. After that, we went to Stone Mountain, a huge mound of granite with a carving on the side. You can walk up to the top of the mountain, but we didn’t have time. Maybe next visit. The day was beautiful – sunny, 70’s. Brad’s Mom and Dad invited us over for dinner Saturday night. It was good to see them again and dinner was delicious.

Sunday morning we went to brunch, then we toured the CNN headquarters. It was fun. We got to tour the different studios. We ate at the HardRock Café, and of course I had to get a shirt. I think I have ones from about 10 different locations, including Paris, Stockholm, and Cancun. The flight home was uneventful, although it was raining
when we left Atlanta and cloudy all the way home.

Julie and Brad’s wedding pictures were ready Thursday, so Dirk picked them up at the photographer’s Thursday afternoon, so we could take them down for Brad’s relatives to see. They turned out beautifully. Christopher came out to the house Friday afternoon and mowed the grass until it started raining. He came out and finished it on Sunday afternoon. It sure was a help to Dirk to not have to try to fit it in.

We had a pleasant surprise Monday. The employees at my office had given us a gift certificate to a nursery to buy a tree or something to plant in memory of Matthew. We had picked out a red maple and the nursery had said they would probably wait until November to plant it because they wanted to wait until it has lost its leaves. We picked a red maple because they said that it was a strong tree and would probably survive for years. Also, in the fall its leaves turn red (just like Matthew’s hair). Anyway, we were having some additional landscaping done Monday, and while they were there, they planted the tree!!! It is just off the corner of the deck, so when it grows it will provide some shade. I can see it just out the kitchen window. It is beautiful and my coworkers were so thoughtful and kind to remember Matthew with a tree.

Thank you for continuing to visit Matthew’s web page. It means a lot to us. We love to read the comments in the guest book, and please, if you have some memories of Matthew that you would like to share, we would love to read them. Please continue to keep us in your thoughts and prayers. We love you all.

Childhood Cancer Awareness Tree
This year's National Childhood Cancer Awareness Holiday Tree will stand tall in the Rotunda of the Russell Senate Building in Washington DC! In keeping with the December 2000 event, this year's 22 foot tree will be decorated with thousands of gold ribbons, each bearing the name, state and age of a child who has or has had cancer. The Rotunda is a well-visited location, both by Congressmen, their staff, and tourists, so this is an opportunity for childhood cancer to get high visibility on Capitol Hill. The tree lighting ceremony will take place on Friday December 6th at 6:30 PM EST. The grandeur of the location for this year's Awareness Tree pays appropriate tribute to the strength of our children who have faced this horrible disease.

Place a Childhood Cancer Gold Ribbon on the national tree, in honor or memory of your special child who has, or has had cancer by registering their name at: Candlelighters Page

Wednesday, October 09, 2002 at 02:39 PM (CDT)

Work has been busy, which has been good. There are a lot of things that I do at work every day that remind me so much about Matthew. One thing that I deal with daily are lab results. Anytime I look at a patient's CBC results and see the Hemoglobin, WBC, and Platelets, I am reminded of him – especially if they are low, as Matthew’s usually were. I was always waiting eagerly for Matthew's results. I guess that over time, this will go away.

I still find myself thinking about him at night when I am trying to sleep. I still replay those last two weeks, and especially the last two days, over in my mind. I know this will sound crazy to most people, but when I have memories of Mattahew, especially good ones, I have started to write them down (no matter how small and insignificant), because I am afraid I will forget them. I have a hard time remembering things about Matthew before those last few weeks and especially before he was diagnosed with leukemia in March, 2000. I guess that for the last 2 1/2 years of our lives we have been so consumed with fighting this disease, that everything before that time seems so long ago.

I got an e-mail from one of my on-line friends from the ALL-KIDS (parents of kids with leukemia) support group I am a member of. She makes candles and runs a website called Annies Flowers and Scents. She donates 30% of the profit from her candles to childhood cancer charities. She names her candles after the kids who are battling cancer, are in remission, or have lost their battle to cancer. Anyway, in the next few weeks, she is going to release a new scented candle that she would like to name in momory of Matthew. It will be called “Matthew’s Marvelous Amaretto.” I can’t wait to smell it. Matthew used to light a candle in his room an hour or so before he went to bed and close the door to kept the scent in so it would smell good when he went to bed. I remember many nights lying with him before he went to sleep and breathing in the wonderful scent of the candles. He still has two that are only half burned and when I smell them, I am reminded of him. What a wonderful gift this is to us. Thank you, Anne. The website is Annies Flowers and Scents. These would make a wonderful Christmas presents in memory of Matthew and the other kids.

Another on-line friend, Chris, purchased a Gold Ribbon from the Candlelighter's organization to put on the National Childhood Cancer Awareness Holiday Tree in memory of Matthew. The link for this is below. Thank you, Chris.

The chrysanthemums that we planted at Matthew’s grave are in full bloom and look so cheerful. There is also some new grass coming up from the seeds that were planted. It will be so nice when the grass comes in – it is sad enough to be there, but it is depressing to see the bare dirt on his grave. Hopefully his tombstone will be in soon and can be placed before winter.

We are looking forward to going to Atlanta over the weekend of Oct. 19-20 to see Julie and Brad. They are settling into their apartment and acquiring furniture little-by-little. Christopher usually comes home either Friday or Saturday night for dinner. Dirk’s mom and I saw a really good movie last weekend – “My Big, Fat, Greek Wedding.” It is hilarious – you should all see it.

Thanks again to everyone who continues to stop my Matthew' web page to check in on us. We appreciate it. Please continue to keep our family in your prayers.





Childhood Cancer Awareness Tree
This year's National Childhood Cancer Awareness Holiday Tree will stand tall in the Rotunda of the Russell Senate Building in Washington DC! In keeping with the December 2000 event, this year's 22 foot tree will be decorated with thousands of gold ribbons, each bearing the name, state and age of a child who has or has had cancer. The Rotunda is a well-visited location, both by Congressmen, their staff, and tourists, so this is an opportunity for childhood cancer to get high visibility on Capitol Hill. The tree lighting ceremony will take place on Friday December 6th at 6:30 PM EST. The grandeur of the location for this year's Awareness Tree pays appropriate tribute to the strength of our children who have faced this horrible disease.

Place a Childhood Cancer Gold Ribbon on the national tree, in honor or memory of your special child who has, or has had cancer by registering their name at: Candlelighters Page

Wednesday, October 02, 2002 at 10:17 PM (CDT)

We just got back from having dinner with Dirk's Mom and Dad. We have a standing invitation for dinner every Thursday night, but since they will be gone tomorrow, they invited us tonight. Dirk and I ride to work together on that day and then go straight to their house from work. It is nice to have a home-cooked meal after a hard day at work. It is nice to have the company, also.

We usually stop by Matthew's grave before we go to their house because it is not too far out of the way. We took a potted yellow chrysanthemum today. We dug a hole to put the pot in so that it wouldn't blow over. Dirk's Mom and Dad had placed another one Sunday (rust-colored), so now there are two. It looks nice and not so bare. The cemetary had smoothed the dirt and planted grass seed on his grave, and Dirk's Dad brought some good soil from down at the country to put over the seed. Matthew loved to go down to the country with him, so Grandpa brought a little of the country to Matthew. There are also some artifical roses that someone placed on his grave. I don't know who put them there - they just appeared. Thank you whomever you are :)

We had a good day Sunday. We went down to my sister, Kim's, house to celebrate my Mom's 80th birthday. We picked her up after church and took her with us. My brother, Ervin, and his wife and kids were there, and of course Kim and her family. The weather was beautiful - sunny and 80's. We all spent a lot of time outside. They have about 25 acres and got a 4-wheel ATV in February, so we all had fun riding it. The kids especially liked it. They have woods and a creek on their property, so it was fun. We got home late, and we were all tired.

On the way home, I was thinking about how much Matthew would have loved to ride the ATV. I wish that he could have been there. I miss him so much. Some days are okay, but on other days, he is all I think about - especially at night.

Julie is getting settled in Atlanta, but is still looking for a job. We talk to her almost every day. Some days she calls me at work during lunch. We have reservations to go to Atlanta the third weekend in October, and I am looking forward to seeing her and Brad.

Christopher came out for dinner Saturday night. He is busy with school. He has a very hard schedule this semester and I think he is a little overwhelmed with all the work. We will all go down to Orlando the second weekend in November for Dirk's brother, Chris's, wedding. It is good to have things to look forward to. It helps me get through to days.


Childhood Cancer Awareness Tree
This year's National Childhood Cancer Awareness Holiday Tree will stand tall in the Rotunda of the Russell Senate Building in Washington DC! In keeping with the December 2000 event, this year's 22 foot tree will be decorated with thousands of gold ribbons, each bearing the name, state and age of a child who has or has had cancer. The Rotunda is a well-visited location, both by Congressmen, their staff, and tourists, so this is an opportunity for childhood cancer to get high visibility on Capitol Hill. The tree lighting ceremony will take place on Friday December 6th at 6:30 PM EST. The grandeur of the location for this year's Awareness Tree pays appropriate tribute to the strength of our children who have faced this horrible disease.

Place a Childhood Cancer Gold Ribbon on the national tree, in honor or memory of your special child who has, or has had cancer by registering their name at: Candlelighters Page

Tuesday, September 24, 2002 at 09:57 PM (CDT)

Another month has passed since Matthew became an angel. Sunday, September 22, was two months. I miss him so much. Sunday after church, Dirk and I went by the cemetery to visit Matthew's grave. When we were shopping Saturday, we found a figure of a bear cub (one that you put in your garden). We used to call Matthew, "Scrappy, the Bear Cub," so as soon as we saw it, Dirk remembered that, so we bought the figure and put it on Matthew's grave. I know that I keep saying this, but it still seems hard to believe that he is really gone.

I am back to work full time, so I am pretty busy most days, which is good. The days pass fairly quickly. Most of the time I am doing okay (at least I think I am), but other times all I do is think about Matthew. Especially at night when I am trying to get to sleep. I don't re-live the last few weeks of his life as much as I did at first, but the memories do creep back in when I don't expect them.

Julie is in Atlanta with Brad. We talk to her most days, but I miss having her around. We are planning to go down to see her and Brad in October. Her birthday is Friday and I wish that we could be with her to celebrate turning 22. Christopher came home Saturday for a while and we went out to dinner. It is always nice to have him home. I miss having all my kids around the house.

Dirk and I are getting a little more accustomed to being home alone. Dinners are usually pretty simple. I don't feel like I have to cook a "well balanced" dinner for my kids, so a lot of nights we just have soup or a salad.

Thanks for continuing to stop by and check in on us. I probably won't update as often as I was, hopefully once a week, so continue to drop in. We appreciate all the prayers and good thoughts from everyone. It is reassuring to know that you still think about him.

Sunday, September 15, 2002 at 10:09 PM (CDT)

This has been a long week. Since I went back to work full time, I haven’t had as much time to update Matthew’s web site. I seem to come home from work and am so tired. The first day I came home from work was really hard. When Matthew was home, he would usually be upstairs on the computer when I walked in the door from work, and he would always call down, “Is that a pretty woman I hear down there?” Then he would come down and ask what we were going to fix for dinner. He was always so hungry on the steroids after the transplant. (sigh) I miss him so much. After the first day, it has gotten a little easier, but the house is so quiet with just Dirk and I. When the kids were smaller, I used to look forward to the time that they were grown and gone so that I would have some quiet and the house would stay a little cleaner. Now I would give anything to have Matthew back, leaving his clothes on the floor, dishes on the counter, empty glasses up by the computer, etc. I knew that we would have to face an “empty nest” eventually, but not like this.

Christopher came out and met us for dinner Friday night, but he had to be back down to school for a fraternity event later in the evening, so he didn’t stay long. Julie and Brad are back from the honeymoon and on their way to Atlanta, after many delays. Their plane from Montego Bay to Atlanta was cancelled and then the next flight was delayed so that they missed the connecting flight to St. Louis on Saturday night. They stayed overnight in Atlanta and flew in to St. Louis this morning. Dirk picked them up at the airport and when I got home from work, we went out for lunch before they headed back to Atlanta. Dirk was going to take their SUV up to fill it with gas yesterday, and the battery was dead. He jumped it and filled it up with gas. Today, when Julie and Brad got ready to leave, the battery was dead again. They tried to jump it, but it wouldn’t, so Dirk and Brad had to go get a new battery before they could leave. Then, they were gone for about 5 minutes, and I noticed that Julie had left her purse. They were about 15 miles away when they discovered that it was not there, so Dirk met them and took Julie her purse. Julie called this evening and said that they figured that they would get into Atlanta at about 2 am. I am going to miss her.

Sometimes I still find it hard to believe that Matthew is really gone. It is hard to believe that it really happened. My heart is so heavy with sadness and I want my Matthew back!!! September is Childhood Cancer Awareness Month. I wasn’t watching, but I heard that on the Fox Pre-Game show for NFL Football this morning, J. Brown announced that he, Howie Long, Terry Bradshaw and John Elway were wearing Childhood Awareness Pins in honor of September being Childhood Cancer Awareness Month. I heard that they all had the gold pins on their lapels. You can visit the site at Childhood Cancer Awareness.

Sunday, September 08, 2002 at 09:20 PM (CDT)

Whew - What an exciting three days. The wedding went off without a hitch. Julie made such a beautiful bride, and she and Brad are such a handsome couple, if I do say so myself! Friday night was the rehearsal and rehearsal dinner. The dinner was great. Brad's family had it at one of the country clubs in the area. Since their friends and relatives are from Atlanta, Ga and Paducah, Ky, they invited all the relatives - both Julie's and Brad's - including their out-of-town friends, to the rehearsal dinner. We all had a great time. They had arranged for a caricature (sp?) artist to be there the entire time, and she was kept busy drawing pictures of all the guests. The kids, especially, loved it, and we all got a souvenir of the evening.

Saturday was THE WEDDING. Julie, the bridesmaids and I arrived at the church at about 1:30 pm to get ready. Julie and the girls had gone to have their hair done in the morning and then went out to lunch. Since Julie had her hair done with her veil, she had to wear the veil to lunch! She said she got a lot of curious looks, but they had a lot of fun. Before I went to the church, I took a rose and a wedding bulletin by Matthew's grave and spent some time with him.

The photographer got to the church at about 2:15 and Julie and Brad had all the pictures taken before the wedding. The photographer arranged for Brad to see Julie alone first and to spend a little time together before the rest of us came into the church for pictures. By 4:30, when the picures were done, it seemed strange that we hadn't even had the wedding yet. Everyone was more relaxed, though, because we had all been together for the pictures and everyone had seen each other. The wedding was at 5:00 pm.

I can't think of anything that went wrong with the wedding. Pastor Arle married them and did such a good job. He made it really personal for them and brought memories of Matthew into the service. She had a single white rose in a vase on the altar in memory of Matthew. Since the pictures were all done before the wedding, when the wedding was over, everyone (including the bridal party) went straight to the reception. Brad had hired a stretch limo to take them to the reception. They took the rose and went by the cemetary and put in on Matthew's grave. Julie said that the limo had a hard time navigating some of the turns in the cemetary. Dirk and Christopher went by the cemetary on their way to the reception, too, so we all spend a little time with Matthew.

Before the reception, Julie and Brad had some pictures taken outside at the country club on the golf course. They will be beautiful against the backdrop of the greens and a lake with a fountain. They would only let the photographer and Julie and Brad on the course for the pictures because they had to delay the golfers at that hole to get the pictures. Dinner was good, and there was a DJ and dancing after dinner. We ended at about 10:30, so it was not a real late evening. Julie and Brad didn't want to hang around late ;) and of course neither did Dirk and I. It was just the right amount of time. After the reception, the limo took Julie and Brad by Dirk's parents house (which was near the country club) to change, and then was supposed to take them to the hotel. I say "was supposed to" because the limo broke down on the highway between Grandpa/Grandma's house and the hotel. They ended up having to call Brad's dad to come pick them up and take them to the hotel. I am sure when they get home from the honeymoon, the limo people will hear from Brad.

Julie and Brad took a plane out this morning at 10:30 to Jamaica for their honeymoon. Julie had forgotten to get one of her bags with makeup/curling iron/toiletries out of my car, so Dirk and I ended up meeting them at the airport at 9:00 am this morning to deliver her bag.

It was a wondeful day for all of us, but it was sad that Matthew was not there. I did pretty good until the photographer took a picture of Julie and Christopher. It hit me that Matthew should have been in the picture with them, and I started to cry. I just needed a good cry and to have a minute or two to grieve for Matthew. Tonight the house seems so empty with just Dirk and I (sigh). Christopher went back to school after dinner. It will take a while to get used to this - We knew that eventually we would have that "empty nest syndrome", but not this soon and not under these circumstances. Matthew has left such a void in our lives. I think that with all the preparation of the wedding, the numbness hadn't worn off. The reality of him being gone is hitting hard. I miss him so much. Thanks for stopping by to check in on us. Please continue to remember our family in your prayers.

Saturday, September 07, 2002 at 07:11 AM (CDT)

Well, today is the BIG DAY - Our little girl will be married and start on an exicting new journey in life. She is so lucky to have found such a wonderful soulmate as Brad. We just love him and his family. They are wonderful, Christian people with good values and a strong marriage. We have tried to instill in her faith in God, honesty, love, thoughtfulness, generousity, and all the attributes that we feel are important, and she has turned into a wonderful, beautiful woman. Where has the time gone? It seems like just yesterday that she was a little (well, not really little, because she weighed 9 lb 1/2 oz.) baby. I remember Dirk and I bringing her home from the hospital and being filled with such awe and love, yet thinking, "Now what do we do?" Now, we are giving our baby over to Brad to care for. I know that he will care for her and love her as much as we do, and I know that they will have a life filled with love and happiness.

Along with all the happiness and celebration, there will be a piece missing - Matthew. Even though he will not be with us physically, I know that his spirit and "presence" will be felt by everyone. Our church is where Matthew was Baptized and Confirmed. It is also where we had Matthew's funeral. Pastor Arle will be marrying Julie and Brad in the same church. He has literally watched our family grow up and he is very important part of it. It will be a wonderful day.

The last few days have been hectic with last-minute wedding plans. Today it will all come together perfectly. Please remember our family in your prayers today - especially Julie and Brad. We love you both! Welcome to the family, Brad!

Monday, September 02, 2002 at 09:36 PM (CDT)

It has been a rough couple of days. Last Friday, Julie and I went to the bridal store and tried on our dresses for the wedding. Julie’s fit beautifully (it did not need any alterations) and she looks like a princess. I can’t describe it here yet, because I don’t know if Brad reads the website and I don’t want to spoil the surprise. Even though this is Matthew’s website, I will post a picture from the wedding when I get one.

Saturday afternoon Julie picked up Brad at the airport. He is staying at our house until tomorrow. He travels with his job, and had to be in St. Louis one week this summer, so he arranged it so that he would be here this week. He is helping with last minute wedding plans. Christopher met us for dinner Saturday night, then went back down to school. It is so nice to have Julie and Brad in the house. It doesn’t seem so empty. We got up and went to church Sunday morning, then I cooked dinner and we rented a movie – “The Rookie.” It was a good family movie.

Today was the hardest. We had Dirk’s Mom and Dad and my Mom over for BBQ. Christopher came out, too. It reminded me of the Fourth of July. That was the last time we had everyone over for BBQ and Matthew made his HOT wings. He spent a lot of time combining different hot sauces to get it just right and hot enough for him. That was one of the last days that Matthew ate really well. The following Monday was when he went to the clinic for the Lumbar Puncture, then Tuesday was when he had the PICC line placed, came home and got in our bed. He stayed there until he died. I know that holidays are going to be bad, but I was thinking Thanksgiving and Christmas! I don’t know how I will get through them if today was as bad as it was. I miss him so much. He left such a large void in my life and a big hole in my heart.

Hope that you all had a good Labor Day weekend. We love you all. Thank you for continuing to check in on us and keeping us in your prayers. A while back I mentioned a friend whose daughter, Alexandria, has ALL. She relapsed and they were trying to get her into remission for a Bone Marrow Transplant. They have not been able to get her into remission, yet. They are going to try to get her back into remission with the same four drugs that she got when she was first diagnosed. If this doesn't work, they will try one of the newer experimental drugs. Please remember her in your prayers. Her website is Alexandria's Angels

Wednesday, August 28, 2002 at 08:38 PM (CDT)

Sorry I have not been very good at updating Matthew's web site. It is a little hard because it reminds me of writing in it daily when Matthew was still alive. I don't know if that makes sense, but I feel at a loss for words as to what to say. I still miss him so much. At times, it still feels like it is all a dream. I can't belive that it really happened.

We took Christopher down to school Sunday. He starts classes today. I know he missed the routine of school and seeing all of his friends over the summer. Hopefully he will be home a little more often this year than he was last year.

We are busy finalizing the last minute details of Julie's wedding. Julie keeps worrying that she is forgetting something, but I think everything will fall into place. I am so happy for her and Brad. They are so cute together. It will be such a beautiful wedding. I will be sure to take some pictures and post one here.

Brad will fly up this Saturday. He will be working in St. Louis next week, which is nice. The wedding is Saturday afternoon and the reception Saturday night. Sunday morning they will fly down to Jamaica for their honeymoon. They will come back to St. Louis Saturday night, and after spending the night here, they will drive down to Atlanta on Sunday morning. The house will seem so quiet with just Dirk and I here. I think the fact that Matthew is gone will really hit hard.

I worked yesterday and today, and will work tomorrow. Some days are better than others - today was a bad day. It seemed like everything reminded me of Matthew. I cried all the way home from work. This is the hardest thing I have ever had to do, and sometimes I don't know how I will get through. Luckily I have Dirk to lean on. This is hard on both of us, but he handles his grief differently. He is more private, whereas I feel like I am always crying. It doesn't take much to get me started. I pray every day for the strength to get through, but it is still so hard......

Please continue to keep our family in your thoughts and prayers. It means a lot that you still stop in to visit.

Thursday, August 22, 2002 at 09:00 PM (CDT)

It is hard to believe that it was one month ago, on July 22, that Matthew became an angel. In some ways it seems so long ago, but in others it seems like just yesterday. I still miss him so much, it doesn’t seem to get much easier. I am trying to keep busy because then I don’t think of him all the time. I went back to work this week – just Tuesday, Wednesday, and today. They are the busiest office days, so I figured that would be a way to ease back into my job. I will probably just work three days a week until Julie’s wedding, September 7, and then will go back full time.

We have a lot of patients that we see on a regular basis. A lot of them knew about Matthew and have known what has been happening with him from the time he was first diagnosed with Leukemia. Most of them knew that I had taken off before Matthew had his Bone Marrow Transplant, but I hadn’t been back until last week. A lot of the patients have been asking about Matthew and me and know that he died. When they come in, they tell me how sorry they are, and I don’t have as hard of a time handling that. It is really hard when they come into the office and ask how Matthew is doing and I have to tell them that he died. This is not a subject a lot of people are comfortable talking about, so I know that they are uncomfortable, too. Hopefully they will eventually all know and it will be easier.

Another thing that Dirk and I both struggle with is what to tell people we meet who ask how many kids we have. I haven’t felt comfortable saying two, because I feel that I am discounting Matthew. Yet if I say three, I am afraid that they will ask about them and I will still end up having to tell them about Matthew. Sometimes I think that maybe I should reply “One in Heaven, and two here on earth.” I don’t know….we will have to work on that one.

Julie has been working on the bulletins for the wedding. She is going to have a single rose on the altar, and on the back of the bulletin, she put

"With us always....."

picture of Matthew

March 29, 1986-July 22, 2002.

"The single rose on the altar is in memory of the bride's little brother, Matthew Donald Hallemeier, who is watching over us from the best seat in the house. We miss you, Maffer"

This will be perfect. I am so proud of Julie for honoring Matthew's memory like this. Maffer is the nickname that we have called Matthew for a long time.

Christopher will move back down to the dorm at Washington University Sunday. It will seem different around here with him gone. Luckily Julie will still be here until the wedding.

Thank you all for continuing to remember us in your prayers. Thank you for checking his website and posting in his guestbook.

Sunday, August 18, 2002 at 09:53 PM (CDT)

Sorry I haven’t updated earlier. No excuses, just not sure what to say. I went to work two days last week. It was okay, but there are so many things that reminded me of Matthew. For instance, we have three phone lines in our office. One is the main line and if it is in use, the call bumps to the second line. We also have a back line that has a private number. Matthew always called me at work on the second line. The first time the phone rang, out of habit I looked up to see if it was the second line, thinking it was Matthew. That and when some of the regular patients came in the office, they all knew about Matthew and told me they were sorry. It was hard. This week I will work Tuesday, Wednesday, and Thursday. That will give me the time to work back into full time, and also give me some time to get wedding stuff done for Julie and spend some time with her before the wedding on September 7. Then she will move to Atlanta with Brad. After the wedding I will start full-time again.

We took care of a lot of wedding “stuff” the last two weeks. We met with the photographer and finalized what shots Julie wanted at the wedding. She is planning to have a vase with a single rose in it on the altar in memory of Matthew. I hope that she will let me put a picture of him beside the rose. I think I told you that Dirk’s partner and his wife gave us this beautiful silver picture frame with a poem on one side and a picture of Matthew on the other - this would be perfect, but I don't want it to ruin Julies day by having his picture right up in front where she can see it. We also found shoes to wear and Julie had her wedding dress fitted. It will be ready for her to pick up on August 30.

Last week we met with the country club where she will have the reception and got to “sample” some of the dishes we can choose from for dinner. I say “sample” because they gave us four chicken dishes to taste – and they were all a whole chicken breast!!! None of us could finish even half of it, but it was good. We ordered the wedding cake and finalized the flower arrangements. Monday we meet with the wedding coordinator at church. It is getting close, and we are afraid that we are going to forget something that has to be done. At least between work and wedding planning, it kind of keeps my mind off Matthew.

Christopher will move down to school next weekend, so he will be gone. Julie will be home until the wedding.

Things are still really hard. I still miss Matthew a lot and I still have a hard time believing that he is gone. I have stopped going in his room because all I think about is Matthew. It hurts so much – it is not fair. We go by the cemetery frequently to just “talk” to Matthew. They have the temporary marker at the gravesite and they have poured the concrete base for the stone. It is pretty and quiet there. It looked so bare, so I fixed a basket of silk flowers and hung them on a hook, so it looks a little better. I have a hard time sleeping a lot of nights. I keep thinking of the last few weeks that he was alive and then the day that he died. I keep replaying it in my mind. There was another teen (18) that I knew about from one of my Online support groups, who died last week. I have come to the feeling that teens don't have much of a chance at beating this monster. The statistics that we were given in the beginning were 70 - 80% survival rate. That includes the younger kids who do so much better against this disease, which makes these statistics falsly high when you look at teens alone.

Thank you all for continuing to visit Matthew's website. It means a lot to me that you haven't forgotten Matthew. Please continue to sign his guestbook. I am touched by all the wonderful things that you write and I am amazed at the number of people whose lives Matthew has touched. I will try to keep Matthew's site updated more often.

We love you all. Please continue to keep our family in your prayers. We really need them right now.

Thursday, August 08, 2002 at 09:11 AM (CDT)

It has been a few days since I have posted an update – we have been busy doing “wedding things.” Yesterday I got word of the death of a beautiful young woman, Kristin Hoffmann, who lost her battle with leukemia due to a fungal infection. She was diagnosed with Leukemia (ALL) in January, 2000, at the age of 18. She relapsed 22 months after diagnosis and had a bone marrow transplant in January, 2002. She had been struggling ever since the BMT and died from complications of it. This is just so UNFAIR! They need to find a cure for this terrible disease. Unfortunately the older kids (over 14) have a far poorer prognosis than the younger ones, but it is still killing our kids at an alarming rate. I am so saddened by this news. I had been following her story since Matthew was diagnosed. Please say an extra prayer for her family.

Brad flew back to Atlanta Sunday night. Monday, Julie and I picked up Grandma and went to the bakery to order the wedding cake. It is going to be so pretty – white cake with a raspberry filling. Then we met Grandpa for lunch. After lunch, Grandma, Julie, and I went to try on her wedding dress. It has been in for about 4 months, but this is the first time we have had a chance to have her try it on. She looks like a princess. We go back next Friday to have the fitting. After we left the Bridal shop, we met Dirk at the monument store to make some changes on Matthew’s headstone. Monday night, Julie, Grandma and I went to see “Devine Secrets of the YaYa Sisterhood.” It was so good, but not as good as the book. If you haven’t read it, you should. It is about the relationship between mothers and daughters. Needless to say, I was exhausted when we got home, but it took my mind off Matthew for a while.

Tuesday was another busy day. Julie and I took my dress by the cleaners. It was on the ½ off rack and had two small spots on it, but it is worth the cleaning bill for the ½ off price. Then I had an appointment with the grief counselor I had been seeing before Matthew died. We mainly talked about Matthew’s last few weeks at home, what happened when he died, and the funeral. Then we went to the photographer and finalized the picture plans.

Yesterday I went into the office and had lunch with “the girls” – Angela, Pam and Lisa. I cleaned out Matthew’s closet of all the medical supplies I had accumulated in the last 2 ½ years and took them in. It was a relief to get all that stuff that reminded us of Matthew being sick out of the house. We had a nice lunch, and of course a lot of tears were shed. It was good to visit with them.

Today, I just want to spend a day at home. There is some cleaning I want to do and I just want some time to myself. I have not been sleeping well the last two nights. I keep thinking about Matthew and how he must have felt the last few weeks knowing that he was going to die. It must have been so hard, but he never complained or said much about it. I don’t know if I could have been that strong. When I think about Matthew, still can only see him how he was those last few weeks. I have been told that this is normal, and that they will be replaced with the happy memories, but right now I can’t even remember him before he had leukemia :( I still miss him so much and just want to hold him again. It is still hard to believe that he is really gone. I know that he is up there smiling down on us, but it is still so hard without him. Thanks for continuing to keep us in your thoughts and prayers.

I want to share a poem I received that is just beautiful. I hope that you enjoy it as much as I do:

GOD'S GARDEN
God looked around His garden
and found an empty place.
He then looked down upon the earth
And saw your tired face.
He put His arms around you
and lifted you to rest.
Gods' garden must be beautiful,
He always takes the best.
He knew you were suffering,
He knew you were in pain,
He knew that you would never
Get well on earth again.
He saw the road was getting rough
and the hills were hard to climb
So He closed your weary eyelids,
and whispered "Peace Be Thine."
It broke our heart to lose you,
But you didn't go alone.
For part of us went with you,
The day God called you home.
We love you and we miss you.

Sunday, August 04, 2002 at 11:49 AM (CDT)

Sorry it has taken me a few days to update. The last few days have had a lot of ups and downs. Thursday, I was going to meet my mother-in-law and one of her friends for lunch. When I woke up in the morning, I just didn't feel like going, so I called and canceled. I spent the day at home, not doing a whole lot.

Friday, I went and got my hair cut. Then I went by the cemetary and they had put the temporary marker on Matthew's Grave. Even though I wanted something to show whose grave it was, it was hard to see the words in print "Matthew Donald Hallemeier, 1986-2002. I sat and ate lunch there and cried. After that I went to the home supply store and bought one of those tall hooks that you put in the ground and hang a basket of flowers on. Then I stopped at Michaels, a craft store, and bought some silk flowers and other things I needed to make an arrangement for the basket. I went to Target after that and as soon as I walked in, I saw the display of school supplies and started crying again. We had hoped that Matthew could go to school this fall, and I felt that I should be buying school supplies for HIM! So that was my day of ups and downs. Christopher was going to stay downtown and eat dinner with some of his fraternity brothers and he said he would call if he was not coming home after dinner. Julie stopped at the airport to pick up Brad on her way home from Murray, so it was just Dirk and I for dinner - Strange. Neither of us felt like cooking, so I had a frozen dinner and he had a sandwich.

We were watching TV and it got to be 9:30, then 10:00, then 10:30 and no word from Christopher or Julie. I was worried that something had happened to them. Julie and Brad got home around 11:00 (his plane was late, they had to wait to eat, and they hit construction traffic on the way home) and Christopher got home around 12:30. The next morning I told them that I was worried about them, and that for now, since I had just lost one child, I could not stand to lose another and that they had to let me know where they were, at least for a while. I hope they understood.

Saturday, after Julie and Brad met with Pastor Arle for pre-wedding counseling, I met them and we went to the florist to order the flowers. She is going to have a single rose in a vase on the alter in memory of Matthew. I suggested that they stop by the cemetary on the way from church to the reception and leave it on Matthew' grave. After we ate lunch down on Historic Main Street in St. Charles, we went to the bakery and ordered the groom's cake. Julie didn't have the picture of what she wanted for the wedding cake, so we will do that Monday. We bought a small bunch of flowers and took them by Matthew's grave. I came home and started the arrangement in the basket for Matthew, and they went by several other stores. For dinner, one of our good friends was in town from Hilton Head (her husband is a pastor and got a call from a church there) and we ate at Red Lobster (yum). Then she came over to the house for a while. When I was out with Brad and Julie, it seemed strange that I didn't have to hurry home to take care of Matthew and so he wouldn't ask "WHERE have you been? What took you so long?"

This morning we went to church. After church, I was talking to a couple of ladies who had also lost children. It was good to see how they are handling this after several years. I don't think people can understand what we are going through unless they have lost a child. My dad died 16 years ago, and even though that hurt, it was NOTHING like I feel now after Matthew died. After church, we stopped by the cemetary and put the hook in the ground and hung the basked of floweres. It looks pretty good, if I do say so myself. We will eat a late lunch/dinner because Brad has to catch a flight at 6:00. Right now everyone except Dirk and I are taking a nap! I guess these youngsters can't handle getting up early :)

Thanks for continuing to check Matthew's website and sign the guestbook. It is nice to know that people haven't forgotten him. We love you all.

Wednesday, July 31, 2002 at 09:01 PM (CDT)

Today was a long day for Dirk and I. This morning we went to the monument company to pick out a headstone for Matthew. Actually we got a three-person stone, since Dirk and I have plots there also. We have Matthew in the middle so we can both be near him. It will take about 2 - 3 months to get it in and set at the cemetary. So many decisions to make that we got a little tired looking. We chose a fairly simple one with roses etched on each upper corner and a cross among the roses on one side and praying hands among the roses on the other.

Then we went to the cemetary to see Matthew's grave. It looked so bare - they had taken all the flowers off and it was just a rectangular mound of dirt. I thought that the funeral home would put a temporary marker on it until the stone comes in so that people will know where he is buried, but there wasn't one.

Then we went to Baue Funeral Home and paid the bill for the funeral (not only do you lose a loved one, but the price to bury them is rediculous!) We also had to get more thank-you cards and we talked to them about putting a temporary marker on Matthew's grave. They said that they will do it right away. We shall see.....

Julie and Brad will be in this weekend to try to finish some of the wedding plans. They will meet with Pastor Arle, and also we will go to the photographer and florist to finalize those things. Julie will be home then until the wedding September 7. She is worried that the happiest day of her life will have a dark cloud over it because of Matthew. Pastor Arle asked her if she wanted him to mention Matthew in the wedding ceremony and she said "yes," so I am sure that there will be some tears shed for him no matter what.

Thank you all who have sent us cards and flowers. It is amazing the amount of cards we are still getting every day. They make me cry everytime I read them, but they also make me feel good. We all miss Matthew so much. It is still hard to believe that he is really gone - it seems like one big, long, horrible nightmare that I can't wake up from. No matter where I am, there are things that remind me of Matthew and that he is gone. I know he is probably up in Heaven having the time of his life and not suffering at all (and he went through enough in the last 2 1/2 years), but we are the ones suffering now.

Monday, July 29, 2002 at 09:08 PM (CDT)

It is hard to believe that it has been a week since Matthew died. At 11:00 am this morning I looked up at the clock and remembered that it was 11:00 am last week that he took his last breath. It seems so long ago. I keep expecting him walk in the door or come out of his room, but then I remember that he is gone. I miss him so much. With all the family in from out of town, things were busy enough that I didn't really have a chance to think much. When everyone left Saturday and Sunday, it really hit me. Today was really hard. Julie went back to Murray, Kentucky for her last week of work. Dirk went back to work and Christopher went back to class and work. I think about going back to work, but right now I just can't.

I got a package delivered today from Dirk's partner and his wife. It was a beautiful silver picture frame with a poem on one side and a picture of Matthew on the other. I cried and cried. Most of the day was okay, but then I would think about Matthew and something he did or said, and I would cry again. Each day when I go out to the mail box to get the mail, I am amazed at the number of sympathy cards that we have gotten. Your outpouring of love and prayers mean so much. Of course, I cry when I read all the cards, but they are healing tears.

Last night I got some sad news. Matthew was good friends with Benji Revelle before he was diagnosed with Leukemia. He spent a lot of time over at their house and they have always had a special place in their hearts for Matthew. When Matthew died, they were at the funeral home and the funeral. Millie (Benji's mom) called me late last night to tell me that Ronnie (Benji's dad) had died of a massive heart attack on Saturday night. Tonight we went to the Funeral home to pay our respects. It brought back a lot of sad and painful memories.

One day this week we will pick out a headstone for Matthew. That will be hard, too. I still can't believe that he is really gone. I wish that I could hold him and see his sweet smile just one more time.

Thursday, July 25, 2002 at 10:00 PM (CDT)

Hopefully tomorrow will be a better day - today was very tiring. Matthew's funeral service was at 10:00 am. We got there at 9:00 because they were going to have the open casket in the front of the church for anyone who wanted to pay their last respects, and for anyone who could not come to the visitation yesterday. At about 9:45, they had the family go up and say goodbye to Matthew. Then they took us in another room and Pastor Arle talked to us and said a prayer. While we were in there, they closed the casket. Today was much harder than yesterday because I knew that we would not see Matthew's physical body again.

Then they had the family walk in and sit at the front. The service was beautiful. We have a tape and typed copy of it and I will try to get it posted tomorrow. Pastor Arle did such a good job. He has known Matthew since he was born, so he knew Matthew well. Plus he has spent a lot of time out at our house the last few weeks, and he knows the whole family very well (probably better that he wants to). When he started to read the first verse, he started crying several times and had trouble getting through it.

When the service was over, they wheeled the casket down the aisle to the back of the church. They had the family follow. I could not believe the number of people at the church - and everyone stood as Matthew and our family walked down the aisle. The pall bearers (My three brothers and Dirk's three brothers) carried the casket into the hearse. The immediate family rode to the cemetary in a limo. When we went outside to get in the limo, there were two police cars and a police motorcyle there to give us an escort to the cemetary. The funeral people said that they were surprised that there was a police escort, because they can NEVER get one in St. Charles. It turned out that Dirk's brother, Dale, is a counselor at the school in St. Charles and knows the DARE officer at the school. Evidently the DARE officer arranged the police escort. Matthew would have been so impressed with the police escort. Of course he would have been more excited if they had their sirens going, but it is illegal unless it is an emergency.

There were a lot of people at the cemetary, and Pastor Arle did a wonderful job there, also. The funeral home took some of the flowers to the cemetary, and after the service for Matthew, we took one of the big arrangements over to my Dad's grave and put them there. It is just across the drive from ours, and you can see it from Matthew's. After we visited with people at the cemetary, the limo took us back to the church where they had a luncheon for the family. It was so nice to not have to worry about lunch and we got to be together for a while longer. Then we went home.

After we got home, the neighbors brought all kinds of cookies, brownies, cakes, a casserole, and lots of other goodies to the house. They have been so wonderful to us. Then the funeral home brought all the live plants and flowers in vases/baskets to the house. There are so many flowers that the house smells like a funeral home :)

Tonight we are all pretty exhausted. Luckily we don't have to get up early tomorrow and we don't have to go anywhere. It will seem strange to have the house so quiet and Matthew not there in our bed needing our help. I miss him so much already. Thank you all for continuing to keep us in your prayers and all that you have done for us.

Wednesday, July 24, 2002 at 10:28 PM (CDT)

Another long day, although not as horrible as I had anticipated. In the morning, Julie and I went shopping for a dress for me to wear to the funeral tomorrow morning. I only have two dresses, and they were not appropriate for a funeral. I wear scrubs at work and jeans at home and dress slacks to church, so I really don't need many dresses. Anyway, we found one and got home about 1:30 pm. We were to be at the funeral home at 3:00 pm for viewing for the family.

When we got there, Dirk didn't think he wanted to see Matthew, so he waited in the back until I went up to see how he looked. He looked wonderful. He actually looked better than he had looked in a long time, especially the last few weeks. He looked so peaceful. They had put the blanket he had as a baby, his baseball hat that he has worn whenever he went anywhere since diagnosis, and we found an eclipse for him that we added today. He always talked about having an eclipse when the got his drivers licence, so this was the best we could do. Dirk came up to see him and was very pleased, also. We decided to leave the casket opened the whole visitation period.

We were so amazed at all the people who showed up to pay their respects. Many of them were friends of relatives who have been following Matthew's daily battle with leukemia. There were a lot of teachers and friends from Pattonville (the school district we were in until last year) and old neighbors from Bridgeton. There were a lot of church members and a lot of nurses from Children's Hospital. Dr. Wilson also came. Most of the people I work with were there, and also the doctors I work for. A lot of Julie's and Christopher's friends were there, also. From the time the general visitation started at about 3:45 pm until it was over at 8:00 pm, there was a steady stream of people. At times the line reached out the door. It was so impressive to see the impact that Matthew had on so many people. Brad, Julie's fiancee, came from Atlanta, and we were surprised that Brad's parents drove up from Atlanta, also. We didn't expect them to come, so it was a pleasant surprise. They are wonderful people and Julie is lucky to have such wonderful in-laws.

We got home at about 9:30 pm. We were all tired. Julie went out to get something to eat with some of her roommates and sorority sisters from Kentucky, then three of them will come home and spend the night. Tomorrow the funeral is at 10:00 am and then we will go to the cemetary for the burial. Then we will have a lunch for the family at church. I think that we are still in shock and it really hasn't hit us yet. There has been so much to do and so many relatives in from out of town that we have had a lot to think about other than Matthew being gone. I am sure that once everyone is gone, it will really hit us hard.

Thanks to everyone who came today, sent cards and flowers, and have been praying for us. We love you all. Matthew is at peace now and is in a better place with Jesus. We are the ones who are left to suffer. We do find comfort in knowing that we will all be together again in Heaven.

Funeral: Thursday, July 25, 2002. 10:00 am
Our Savior Lutheran Church
2800 West Elm St.
St. Charles, MO 63301

I want to share a poem that I came across. I don't know who wrote it, but it is beautiful.

The Broken Chain

We little knew that morning
That God was going to call your name
In life we loved you dearly
In death we do the same
It broke our hearts to lose you
You did not go alone
For part of us went with you
The day God called you home
You left us precious memories
Your love is still our guide
And though we cannot see you
You are always by our side
Our family chain is broken
And nothing seems the same
But as God calls us one by one
The chain will link again

Tuesday, July 23, 2002 at 10:16 PM (CDT)

Today was a really long day. We had an appointment at the Funeral Home (Baue) this morning. Julie and Christopher went with us. Dirk and I had made most of the arrangements several weeks ago, but they wanted to finalize the information. We worked on an obituary last night, and had a few laughs with it (morbid sense of humor, right?). We also sorted through pictures of Matthew for the picture boards at the visitation. We thought that we would have to arrange the pictures ourselves, but the funeral home will do them. We also took the clothes that we wanted Matthew to wear. We decided to put him in blue jeans and one of his favorite long sleeve shirts (yellow that looks good with his red hair). We took his baseball cap that he always wore and the blanket that he had when he was a baby for them to put in the casket with him. The crucifix that Pastor Arle had given him will be in his hands. The woman who met with us said that she had seen Matthew and he looked good. We plan to have the casket open for the family viewing and will decide whether to have it open for general visitation based on how much like Matthew he looks. We don't want people to remember him with a full face from the steroids and he had a lot of bruising from the low platelets that they will try to cover. We would like anyone who is coming to the funeral home to either bring, or write when they get there, any memories of Matthew for us. I am sure there are a lot of things that we never knew about him when he was at other peoples' homes and school. If you cannot make it to the funeral home, please e-mail them to me at the address below, or put them in the guest book. We will really appreciate these.

After we left the funeral home, we stopped by Jack-in-the-Box (one of Matthew favorite places to eat) for lunch, then we had to go to the cemetary to sign the papers for them to open the grave and to make sure that they opened the right one. Dirk and I bought plots on either side of Matthew and Dirk's Mom and Dad didn't have plots yet, so they are next to us. The nice thing is that they are right across the drive from where my Dad is buried and my Mom will be buried, also. Julie and Christopher had not been to the cemetary yet.

After we were home, my sister, Steph, who flew in from New York; my brother, Greg, from Pennsylvania; my mom; my sister, Kim, from Rolla; and my sister, Jenny, from Ferguson, came over. My other two brothers, Ervin and Jon, came over later for dinner. Dirk's mom and dad and brother, Jay and his wife, Laurie, came over for a while, too. This is the first time that my whole family has been together in 12 years, so we took some pictures. My Aunt Frances came in from New York. It was nice to have everyone over. It would have been too quiet with just the four of us. It took our mind off Matthew a little, and also it was nice to remember things about Matthew.

Our neighbors brought over sub sandwiches, potato chips, soda, tea, cheese cake, and brownies for dinner. Julie Bushre, the youth director from church, also brought over lasagna (it was wonderful), salad, french bread, and a home made apple pie (also wonderful). This was so thoughtful and nice to not have to worry about food for dinner. There is so much left, that we will have some for lunches and dinners in the next few days (and snacks). We just looked outside, and the neighbors have put luminaries up the driveway and sidewalk to the front door. It is beautiful!! We are so lucky to have such great neighbors even though we have not lived here a year yet. They are planning to bring over breakfast in the morning, and one of the other neighbors just brought over muffins. Julie and I think they are trying to fatten us up! :)

Everyone is gone now, and we are exausted. We still need to write something about Matthew for Pastor Arle to read at the funeral. We decided that none of us could read it without crying, plus some of us don't like to read in front of a lot of people. There is so much to do in the next few days. It will be hard when it is all over and everyone has gone home. We will have a chance to stop ands think about what has happened and the reality will sink in.

Some of Julie's friends from Murray, Kentucky, are coming up tomorrow and will spend the night. That will be fun. Matthew was concerned about people from Bridgeton knowing about him, so please pass the news around and also the information about the funeral arrangements. I know that they were not very obvious yesterday, so they are:

Visitation: Wednesday, July 24, 2002. 4:00 pm - 8:00 pm.
Baue Funeral Home
620 Jefferson St.
St. Charles, MO 63301

Funeral: Thursday, July 25, 2002. 10:00 am
Our Savior Lutheran Church
2800 West Elm St.
St. Charles, MO 63301

Monday, July 22, 2002 at 07:39 PM (CDT)

Matthew passed away at 11:00 am this morning.

Despite the efforts of Dr. Wilson and Debra (the Hospice Nurse) last night, Matthew had a very restless night. His breathing was very rapid and short. After each breath, he would moan as he exhaled. He vomited the dark maroon liquid again at around 1:00am. After we cleaned him up, we decided that Debbie and I would take turns sitting at his side to make sure that if he continued to vomit, we would be able to suction it out of his mouth so that he would not choke. We took turns about every 2 hours throughout the night sitting with him. Even when we were not the one sitting with him, it was hard to sleep. A lot of the time Matthew would start to gag and would swallow before it came out. We tried to remain calm and not panic him when he did this, but it was very nerve-wracking. After he would finish each episode, we would ask if he were okay, and he would mumble what we think was “yes.”

Around 8:00 am this morning, Matthew started having what appeared to be tremors in his arms and his eyes were moving very rapidly back and forth. He also was running a fever of over 103. Debbie gave Tylenol to help with the fever. Debra was on call and told us that she would be back this morning. She arrived at about 10:30 am and started to give Matthew some other medicine for pain. Debbie was helping Debra and I was holding Matthew’s hands. Suddenly Matthew’s arms and hands started trembling even more than before and his eyes opened and were moving very rapidly. This lasted for about 30 seconds and then he went limp. I was still holding Matthew’s hands, and Debbie moved up by Matthew’s face and watched as he took his last breath. His eyes were wide open for a while, then Debbie closed them and he looked at peace.

After we spent a little time alone with Matthew, Grandmother came. We called Grandpa and Grandma Hallemeier, Christopher (who was at work), Julie and Pastor Arle. While we were waiting for them to get here, Debbie and Debra cleaned Matthew up and put fresh clothes on him. They pulled his IV and Catheter. He looked just like he was sleeping. A couple from our church who lost their son 8 years ago, and has been very supportive throughout Matthew’s battle came also. While Pastor Arle said a prayer and we were saying our “good-byes,” Debra took care of calling Dr. Wilson. She also called the Infusion Company and the Medical Supply Company for us so that we would not have to do it.

After we were done, Debra called the funeral home. We were concerned about them bringing a hearse to the house, but they brought a van. Matthew was concerned about them putting him a body bag and zipping it over his head, so they were kind enough to bring a stretcher in and they put a sheet over Matthew and pulled it up over his shoulders. We all walked out with him to the van.

We were all kind of in shock this afternoon. We still kept thinking that it was a bad dream. My brother, Dale and his wife, Becky came over and so did Debbie’s brother, Jon. It was nice to have people here - the house seemed strangely quiet. As hard as things got the last couple of weeks, it is a time that we will look back on as a time that drew us together as a family. The hospice nurses were wonderful.

FUNERAL ARRANGEMENTS ARE ABOVE.

Thank you for all the prayers for Matthew and please continue to remember our family. We will continue to keep this updated for a while, so please come back.

Monday, July 22, 2002 at 01:12 AM (CDT)

It has been a long 24 hours. I will begin by telling you that Matthew is still fighting. Last night, he was in quite a bit of pain. I had to call Pam, the Hospice nurse on call, twice to get an order to increase Matthew's versed and morphine. He has such a high tolerance for pain meds that you or I would be zonked for a year if we took that much. I also started to hear a "sloshing" sound in his stomach with each breath. It kind of sounded like it does when you drink a glass of water and you hear it moving around in your stomach.

This morning, Matthew started running a fever of 104.5. I called Pam and got an order for tylenol suppositories. Between them and putting ice packs under his arms, we got it down to 102.7 in the afternoon. When Pam came to see Matthew at noon, he was still in pain, so she got an order to increase his pain medicines again.

Dirk and Christopher were trying to get him comfortable, when he vomited up some bloody liquid. It was dark maroon, so it was not fresh blood. This was probably what I heard in his stomach. Luckily we turned him on his side quickly, and had gotten a suction machine from the Home Health Company just yesterday. When we were turning him to try to change the sheets and his clothes, he vomited again. Even though I am a nurse, it is hard when it is your own child. We felt like we were getting to the point that we could not take care of Matthew at home. We called Pam, and she said that Debra, one of the other Hospice Nurses, would come out.

It was such a relief to have Debra here. Between Dr. Wilson, Debra, and the Pharmacist (who made a delivery to the house at about 11 pm), they finally got Matthew more comfortable. Right now he is down in our bed making a moaning sound with each breath, but I don't know if he is actually in pain. He is taking very shallow breaths. Dirk is watching him while I update. Debra finally left at about 11:30 and will be back tomorrow morning to check on Matthew. She worked all day at the hospital, so she must be exhausted. The hospice nurses are wonderful. I don't think we could have kept Matthew at home if not for their help.

Christopher was such a help today with Matthew - so caring and gentle. Of course, I could not do this without Dirk. My mom brought dinner out, but I did not have time to eat. I think that Dirk and Christopher ate a little between helping with Matthew. Dirk's Mom and Dad came out to give us support and also Pastor Arle. It is late and I am tired. Hope that there are not too many mistakes and typos. Please pray that Matthew can find comfort and peace soon.

Saturday, July 20, 2002 at 07:17 PM (CDT)

Sorry for the late update, but there is not much change today. The hospice nurse was out this morning and increased Matthew's Morphine and Versed drips because he seemed to be uncomfortable. He woke up frequently last night and I had to give him extra doses of morphine to get him comfortable and back to sleep. He has been awake off and on this afternoon, but you cannot make out what he says - mainly just sounds from his throat, but his eyes are partially open. Everyone is amazed at how he is still fighting.

I had some bad news yesteday. A good friend of mine from down at Children's Hospital e-mailed me and told me that her daughter has relapsed. She was diagnosed with the same leukemia as Matthew about 6 months after Matthew. She was on the same high-risk treatment plan as Matthew and relapsed about the same length into treatment. Her name is Alexandria. They are trying to get her back into remission so that they can do a Bone Marrow Transplant, but things are not looking good. I hate this disease. Please take a minute to say a prayer for her. Thank you.

Friday, July 19, 2002 at 04:21 PM (CDT)

Last night was another long night - Matthew was having more painful bladder spasms. He would sleep for about an hour, then wake up in pain. Luckily the pain would only last a minute or two, but we had to get him quieted down after that. Early this morning, I called the hospice nurse on call and got permission to increase his Versed drip. We don't know if Matthew was more comfortable and therefore less sleepy, or if the Versed made him aggitated, but he was awake talking most of the morning. After he took a short nap, he was talking most of the afternoon. Most of what he says doesn't make sense, but some of it does. He has a lump under his chin on the left side that is a mass of leukemia cells, that also makes his speech harder to understand in addition to him being confused. When Debra (the hospice nurse) came, we discussed the options and after talking with Dr. Wilson, we increased the morphine drip and the Versed drip in hopes of making him more comfortable and sleep more. Right now he is sleeping quietly. Hopefully tonight will be quieter for all of us.

I want to take a minute to thank all of you who have been playing Front Line Force (FLF) with Matthew the last 2 years. Since he was diagnosed with Leukemia in March 2000, he has been very self-conscious about his looks – from being bald, to the puffy face due to the steroids, to the iliostomy – and had basically isolated himself from his friends. When talking to him about this, he said that he didn’t want them to see him as a “sick kid,” and that he just had to do this by himself, and when he was cured, he would get back to doing things with his friends. For the last 1½ years, Matthew has spent hours on the computer with you. Until Matthew relapsed and we heard from you, we had no idea of the support and friendship that Matthew had from all of you. You have been his contact with the outside world and you accepted him without even seeing him. Every time he came home from the hospital and felt terrible, you were whom he turned to to get his mind off how terrible he felt - for that we are very grateful. Thank you for being there for him. We had no idea how many gaming friends he had. In fact, in case you didn’t know it, Zofran is the name of a drug that Matthew and other cancer patients take to help control the nausea from the chemotherapy.

We continue to be amazed at the volume of entries in the guest book and from how far away people are praying for Matthew. We are in awe at the impact that he has made on so many lives. Please hug your children and tell them how much you love them - you never know how long you have to enjoy them. Thank you for continuing to keep Matthew (and our whole family) in your prayers. They are comforting and are like a big, warm hug :)

Thursday, July 18, 2002 at 01:24 PM (CDT)

Last night was a long night. I guess Matthew was making up for the quiet day he had. He must have his days and nights mixed up. He was awake about every hour between midnight and 6:00 am with painful bladder spasms. He has a button on the morphine drip that we can give him an additional 10 mg on demand, but the spasms only last a minute of two and then he is usually back asleep. I don't think that the morphine works that fast.

His breathing is getting slower with longer pauses between each breath. A lot of the time we find ourselves waiting for that next breath and it seems like such a long time. His lungs are still clear and his heart is strong. He is asleep most of the time, so he doesn't say much. Most of the time he appears to be resting comfortably. This morning, Dirk and Christopher helped me get him cleaned up and turned on his side. He seemed so comfortable on his back that we have hesitated to turn him, but I was worried about him getting a bed sore on his tailbone from being on his back so much. When we got him turned, there was a reddened spot, but the skin is not broken. I put some lotion on it and massaged it and hopefully it will stay intact.

After we turned him, he was awake for quite a while and talking. He was confused most of the time, but I told him to look at me and told him that I loved him, and he said "I love you, too." These are the moments that will stick in our minds about these last few days and hopefully we will forget the painful times. When Debra came out this morning, she increased the Versed drip in hopes of helping with the bladder spasms, or at least making it so that he will not remember them. If he continues to have them frequently, we will increase his morphine, but he seems so comfortable the rest of the time.

I have completely lost track of the days, and no way can I remember the date. It seems like one day blends into the next, but the time is slipping away. Sometimes we have trouble remembering if something happened today or if it was yesterday. Thanks again for all the wonderful entries in Matthew's guest book. We love you all, even though a lot of you we have never met, and your prayers and comforting words mean so much to us.

Wednesday, July 17, 2002 at 01:47 PM (CDT)

Matthew is sleeping peacefully with Christopher watching over him, so I will take the time to update. Matthew continues to fight. His strength is amazing. Yesterday afternoon, Deanne, the hospice nurse on call, came out and put a catheter in Matthew's bladder to hopefully relieve some of the pain. Matthew had just had Versed and was sleeping soundly when she came. I guess it was too much to ask that he would stay asleep during the insertion of the catheter (hah) - he woke up yelling. Deanne got the catheter in and it started draining what looked like fresh blood. We finally got Matthew quieted down, and decided that we would start a Versed drip to try to keep him a little sedated. I had been giving it to him IV as needed up until now, but he was requiring it so often, Deanne and I felt this was best. After the Versed was started, Matthew fell asleep.

He continued to sleep until he would pass blood through the catheter, then he would cry out in pain and I could tell he was miserable. I kept the morphine handy and would give him extra when this happened, but the pain usually only lasted for about 5 minutes, then he would doze off again. This continued all night. He would still drain blood into the catheter, but his bladder would spasm, causing extreme pain. At about 11:00 pm, I called Deanne and asked if we could do something to relieve Matthew's pain. She talked to the doctor, and they ordered some suppositories to help relax the bladder and hopefully relieve the pain. They had the drug store deliver them. I was also told that I could increase the amount of morphine I could give him. We had a terrible night with Matthew waking up in pain about every 1 - 1 1/2 hour. It was so hard to watch, but then he would doze right off again. The suppository did not seem to be working.

Finally, at about 5:30am this morning, I called Deanne back and told her that the suppositories were not working. She called the doctor, and we decided to put Matthew on a Morphine drip and also to increase his Versed drip. Deanne walked me through increasing the Versed, and told me that they were going to start Matthew's morphine drip at 30 mg/hr and that I could go ahead and give this dose IV until the drip was ready. I also used another of the suppositories to see if it would help.

Nikki, one of the other hospice nurses, came out at about 8:30. By this time Matthew was out completely. She started the morphine drip and also told me that I could give him an additional 10 mg every 20 minutes as needed. Since then, Matthew has not awakened at all. It is good to see him peaceful and not in pain, but we miss hearing his voice. Even though he was confused and got frustrated with us, mixed in were some lucid moments when he would say that he loved us and give us a rare smile. I imagine that he will remain sedated until he takes his last breath.

Please continue to pray that Matthew finds peace and that he is safe in the arms of Jesus soon. This is so hard....

Tuesday, July 16, 2002 at 01:16 PM (CDT)

Matthew continues to hang in with us. He was more restless last night and was up about every 2 hours. Most of the time it was because he had to go to the bathroom. Because his platelets are so low, and they keep him from clotting, what started out at dark maroon urine last night has turned to passing clots this morning. It is so painful for Matthew. The hospice nurse, Deanne, checked with Dr. Wilson to see what they could do to help with the pain. She is going to come out and insert a catheter into his bladder to help pass the clots. We will have to keep it flushed so that it doesn't get "plugged up" with the clots. We have been giving him more morphine to try to help with the pain, and he seems to sleep soundly between waking, but it is hard to see him hurt when he is awake. We put a long-acting duragesic patch on him this morning to see if the constant medicine will help. In an hour or two, if he doesn't seem to be more comfortable when he is awake, I can add another one.

His breathing seems to continue to be fairly regular and he is taking deep breaths, rather than shallow ones. Even though he is confused when he is awake, he seems to understand that he needs to leave the oxygen in his nose to "help him breathe." His heart is still beating strong and regular. Also, since his platelets are so low, the white parts of his eyes are red from the blood vessels bleeding. It doesn't seem to be painful for Matthew, but it does look kind of "spooky."

Julie and Christopher have been such a help in sitting with Matthew and loving him. And of course, I could not do this without Dirk. He is so good with Matthew, and at times, he is the one who can calm Matthew down. Matthew almost always asks for "Dad" when he wakes up.

I don't know how long his poor body can take this, or how long we can watch him like this. I keep praying to God to take him and give him peace, but I guess he has other plans and this is not Matthew's time. Please continue to pray that we can try to make him more comfortable until he is safe in the Lord's arms. Your prayers and good thoughts through the guestbook are such a comfort to us right now.

Monday, July 15, 2002 at 10:13 AM (CDT)

I am sorry to keep you guys wondering about Matthew. I know that many of you check Matthew's site regularly for updates and are probably wanting to know what is going on. Matthew continues to hold on stong. His breathing for the most part is regular and deep. Nikki, the hospice nurse, was just here and said that is lungs sound clear and heart sounds strong. He is just such a fighter. We are so proud of him. She said he could last a couple more days or go today.

He is more confused. He rarely knows what is going on and what is says doesn't make sense, except that frequently he thinks he's playing the computer game that he has played a lot the last year or so. Julie said maybe he is waiting to finish the game before he goes. He usually just wakes up when he has to go the the bathroom. Between these times, he seems to be resting comfortably. In fact he hardly even moves. When he wakes up, he usually doesn't complain about pain unless we try to move him, but if I ask him if he is hurting, he says that he is. We are going to try giving him morphine around the clock to see if he stays more comfortable when he does wake up.

A lot of the time when he wakes up, he gets mad at us, but we know that this is not Matthew talking. He has even told me that he hates me several times, but I know that he is confused and is reacting to pain and probably the feeling of being helpless. Usually, I have to give him Versed to get him to go back to sleep, and it works fairly quickly - almost as soon as I have it in.

One time yesterday, when I was giving him morphine, he was worried about his PICC line working. We told him that he was taking such good care of it and that we were so proud of him for watching out for it, and he smiled the biggest smile!! That is about the only smile we have seen in the last day or so. He has had a central line for so long, that he is just used to holding on to the IV tubing to keep it from pulling and does it without even thinking about it.

This morning, when Matthew woke up, he was was out of it and kept saying that he wanted to do something fun. He wanted to go somewhere fun. I told him that it was in the morning, and that did he remember that in the mornings we always lay around in bed and watched the Today Show. He said "Oh, Yeah. Why isn't it on?" So I turned it on and he was quiet. Luckily he will let Dirk help take care of him, so he is so much help. Dirk helps get Matthew to quiet down by taking like he is playing in the computer game. I love you, Dirk, for all the help you are, both taking care of Matthew and the housework.

Julie and Christopher have been spending a lot of time just sitting with Matthew, holding his hand, and talking to him. It is so sweet to watch. Yesterday my mom came over and just hung out. She feels better just being here rather than sitting around her house. Dirk's Mom and Dad came over in the afternoon and brought dinner, which was such a help. They hung around for a long time, too. It is so nice having them all here, even if they are just in the other room.

Matthew still wants to get up to go to the bathroom when he wakes up. Sometimes he doesn't wake up in time, and it is so hard on him to try to get him up to change the sheets, and it hurts him so much to get up, but he insists on getting up to go to use the urinal. Last night is the last time we did it. When we finally got Matthew back settled in bed, he was breathing so shallow and we were worried that this was it. Then, after he rested a minute, his breathing got deeper and more regular. We decided that we were not going to get him up any more if we could help it. Dirk went to Walgreens and got some Pull-Ups and they seem to work well. The only problem is that Matthew still wants to get up. Like all parents, we were so proud of our kids when they finally learned to use the toilet. It is hard to see your 16-year-old having to resort to this.

Hopefully, giving him the morphine around the clock will keep him comfortable today. Even though he probably won't wake up as much, that is okay. The glimpses of the Matthew we all knew are so few that it is worth the sacrifice to keep him comfortable. Everyone's prayers are such a help to us. They give us such comfort. Thank you.

Sunday, July 14, 2002 at 10:12 AM (CDT)

Good Morning. Matthew continues to be with us. I don't know why, but he is. It is very hard to watch him.

He woke up twice last night to go to the bathroom, then settled down to sleep. This morning, he has been restless, talking about things that make no sense. He asks questions and gets frustrated when we don't know the answers because the questions don't make sense. Even though it is so nice to snuggle with his warm body, hold his hands, and watch the expressions on his face, Dirk and I both have mixed feelings. As much as we love having him here, this is not the Matthew that we know. I finally gave him the Versed and Benadryl and he is calm and sleeping once again.
I know that the Lord will take him in HIS time, but I wish I knew what he was waiting for.

His platelets must be very, very low. The purple spots that are bleeding under the skin are "popping up" on this arms and hands now and they are looking bruised. His nose has been bleeding a little so that there is dry blood where the oxygen cannula is, but I don't want to wash it off for fear of more bleeding. He has coughed up some blood several times over the night, but it doesn't seem to be actively bleeding. He is very pale. I have been trying to keep vaseline on his lips because they get real dry and "crusty" and it bothers him when he wakes up. I keep praying for the Lord to take him peacefully into his arms.

Saturday, July 13, 2002 at 11:05 PM (CDT)

This has been a long day and I am tired, so this will probably be short. Matthew continues to amaze us with his battle with life. He is sleeping soundly between having to get up to go to the bathroom. Usually that is what wakes him up. He has been going 5 - 6 hours between waking up. When he is sleeping, he doesn't move at all. His breathing is fairly regular but slow. Every few minutes, he has about two times that there is along pause between when he takes another breath. I used to hold my breath waiting for him to breath again, but I have gotten used to it. He is sleeping very soundly.

We have spent most of the day just hanging out with him, stroking his arms and legs, holding his hands and just being near him. While Dirk and I were eating lunch, Julie and Christopher were with Matthew. They looked so cute, Christopher was laying on the bed beside Matthew with his head on Matthew's shoulder and holding one hand, and Julie was sitting in the rocking chair holding his other hand. They were talking and laughing. I went in and asked them what they were doing, and they were talking and remembering things about growing up that they had done with Matthew. Even though this is a rough time for our family, it has drawn us closer. I cherish these days with all my family together.

I will let you know how the night goes tomorrow. Thanks for all the prayers and good wishes for Matthew and our whole family. They help more than you can ever know.

Friday, July 12, 2002 at 05:14 PM (CDT)

Matthew continues to hang in there. He has always been a fighter. He was up several times last night. He gets up at the side of the bad to go to the bathroom, then he usually sits on the side of the bed to catch his breath and for a drink of water before we get him settled and comfortable. These are the times that he is most alert and talks, but it's all he can do to take sips of water between a minute or two of oxygen.

At 5:30 this morning, when Matthew got up, we were sitting on the side of the bed, and he said “Why were Julie and Christopher born normal and I wasn’t?” When he asks these questions, I never feel that I have the right words to answer him. I told him that he was chosen by God as someone very special from the very beginning and that he was the lucky one - he gets to go to Heaven soon and be with Jesus. The rest of us have to wait for our time to come. I told him again how beautiful it was and how happy he would be. I believe this with all my heart and soul, but I still question WHY? Why did Matthew have to go through these last two plus years of suffering to get to this point?

Matthew is sleeping longer between periods of being awake. He seems to be sleeping peacefully and does not appear to be in pain – at least no outward signs. This afternoon, I got him up to go to the bathroom, and after he was done, we were sitting on the side of the bed again, and he asked “Mommy, are you proud of me?” That really tore at my heart. I guess because I know that I have told him so many times how proud I am of him and I am hurt that he should have to ask. I told him again that I was so proud of him and that he had fought so hard and that I loved him so much. Then, Dirk came in to help me get him settled in bed because Matthew does not have the strength to get up off the bed, plus it is painful for him, and we both told Matthew again how proud we are of him.

The whites of Matthew’s eyes are getting yellow, and his face has a yellowish cast to it. I know this is because his liver is failing. This, plus the fact that the leukemia has also taken over in his spleen, is what is causing him so much pain in the abdomen. It is very hard and distended. He's getting more and more bluish-purple spots on his legs due to to his lack of platelets. Sometimes there is a long period between breaths, so I know that the time is getting close. Debra, his hospice nurse, was here this morning and spent a long time with him and with the rest of us. She is such a special person. Our pastor, Pastor Arle, stayed the night last night. It is such a comfort to have him here. He will be back this evening. Julie and Christopher have been hanging around a lot in our room with Matthew, Dirk and I. I think I have said before how much I love to have my family all together.

Every time I read the beautiful posts in the guest book, I am amazed at the effect Matthew has had on so many people. I guess this is one of the answers to my question of WHY?

Thursday, July 11, 2002 at 10:30 PM (CDT)

Sorry for the late update. Matthew has not changed much other than his breathing getting a little more irratic. Before, he was breathing fast and very shallow breaths because his stomach hurts when he takes big breaths. Now, he is breathing slower and deeper. He is also having periods where there is a longer pause between when he takes a breath. Our pastor, Pastor Arle, has been here since this afternoon. The first time Matthew had a long pause between breaths, we were all thought that the end was near. He was breathing slower and slower and Dirk and I were holding his hands and talking to him, telling him how much we loved him, and he opened his eyes and said he had to go to the bathroom!

He is sleeping more and more. When he does wake up, he wants something for pain. Several times he sat on the side of the bed for a drink of ice water, but it really tires him out. He has to pause after every move that he makes to catch his breath. One time when he told me to wait, I said "Take your time, Matthew, we have all the time in the world," and he looked at me with a little smile and said, "actually I don't." Still with a sense of humor.

Each time that I read the guest book and all the wonderful things that you write, I am in tears. I am amazed that Matthew has had such an impact on so many lives - people who don't even know us. I think you can all tell that he is a very special boy who is deeply loved by his family and friends. Thank you for holding us close to your hearts in prayer.

Thursday, July 11, 2002 at 10:29 PM (CDT)

Wednesday, July 10, 2002 at 05:28 PM (CDT)

Matthew is sleeping soundly right now, so I will try to get his page updated. I sat down this morning to update it, but Matthew woke up and needed me. Last night and today have been rough on Matthew. Last night he would sleep for about 1 1/2 - 2 hours, then wake up in pain, or needing to turn. He always asks when he took the morphine last, and if he feels it has been too soon, he says says he will wait until he wakes up again. He says that he hurts really bad, especially his abdomen, but he doesn't want to take more pain medicine because it makes him feel like he can't breathe, and also he doesn't like feeling out of it. Right now, he has no control over what is happening to him, and this is one thing he can control. Even though he says he hurts when he is awake and it is breaking our heart to watch him, he is able to sleep fairly soundly for an hour or two between waking. He is one tough kid. We love him so much. It is so hard to watch him hurt, but we feel that it has to be his decision as to whether to put him on a continuous morphine drip to better control the pain. Right now, he isn't ready for that. He is using oxygen around the clock now to help him breathe more comfortably.

He continues to run fevers, but I haven't checked it since last night. I know he has been higher than 103, but like I said, I don't want him to be anxious if it is higher, so I won't take it. His breathing has changed last night and today. He is breathing faster and much more shallow. I am sure that this is why he feels so short of breath when he is awake. Last night as I was laying next to him, I found myself listening to him breathe and almost holding my breath if I couldn't hear him for a minute. The hospice nurse says that he will probably not just stop breathing, but his breathing will change again first.

Julie came home this morning. Dirk called her last night to let her know what was happening. I am glad that she and Christopher are home. Dirk has been staying home from work also so that he can be here.

Last night, while I was sitting next to Matthew and he was awake, he said "Mommy, I'm sorry. I tried really hard." I felt so bad. I told him how proud we were of him and that he had fought so hard, but sometimes God has other plans for us. I told him that he had fought this battle so courageously, and that a lot of people would have given up before this. He has been through so much. I just hope that his battle is over soon, and in the end, he will be the biggest winner of all. Please keep praying that he will be comfortable in these last hours of his life.

Tuesday, July 09, 2002 at 10:11 PM (CDT)

Just when I thought yesterday was an exhausting day for Matthew, along comes today. I felt so bad for him today. We got down to the clinic at about 9:45 and were put right in an isolation room. Even though he is 100 days past his BMT, since his counts show 95% blasts (leukemia cells), he has nothing to fight infection, so he needs to be isolated. Mandy, Matthew's primary nurse in the clinic, came in and put some medicine in the red lumen of his central line to see if she could get it unclotted. Dr. Wilson came in to see Matthew and felt that the reason that his central line clotted off was because of the large number of White Blood (leukemia) Cells clogging it. Matthew had no IV access for pain medicine, so Dr. Wilson suggested a fentanyl patch. This is a small, clear patch that you put on and the pain medicine is absorbed through the skin. Matthew agreed to try it, but normally doesn't like long acting pain medicine because it makes him so lethargic and he feel like he cannot breathe.

After the medicine had sat in the red lumen several hours, it still would not unclog. After much discussion as to the best way to give Matthew some type of IV access, we decided to have a PICC line placed. This is a long, flexible tube that is placed in his arm at about the inner elbow and threaded up toward the heart. This can stay in for weeks. To keep it from becoming clotted like the central line, we decided to keep IV fluids running at all times. The PICC line was scheduled for 2PM. Poor Matthew was so uncomfortable. His back hurt really bad, and his head hurt. He was able to walk down to the procedure center to have the PICC placed, though.

The nurse who placed it was wonderful. Matthew did not even flinch. He was still hurting pretty bad and said he felt like he was running a fever. We took it and it was a little over 101. Then he had to go over to radiology to have an chest x-ray to make sure the PICC was in the right place to use. After he got back to the procedure room and they got IV fluids started, he was in tears. He said that he hurt so bad that he didn't think he could make it home and wanted to spend the night in the hospital.

They took him back to the clinic in the stretcher, and Debra, his Hospice Nurse, was there. She is so good, she got Matthew some Morphine and Versed and got him comfortable enough to come home. After seeing how Matthew was today, I had the feeling that he was going down hill fast. Debra mouthed the same thing to me - that he didn't have much time left. I think Matthew knows this, because he was talking to Debra about what would happen to his body after he died. It was so hard to listen to them talk, but I was glad to hear Matthew's thoughts.

Tonight, he is laying in our bed with IV fluids running. The PICC seems to be working well and we are trying to keep him as comfortable as possible. He still hurts when he turns, but not as bad. He also is running a fever. I took it about 7:30 and it was 103.1 Matthew was concerned about it, so I will not take it any more because other than giving him tylenol to make him comfortable, we would not do anything more. Debra said that the leukemia was probably causing the fevers.

Please say a lot of prayers for Matthew tonight. He doesn't seem to be a frightened, just trying to get comfortable.

Monday, July 08, 2002 at 08:01 PM (CDT)

What a long day down at the Oncology Clinic at Children's Hospital. Since Matthew has been having increased back/neck pain, headaches, and blurred vision, Matthew felt that a lumbar puncture would help. That is where they put a small needle into the spine and draw out some of the spinal fluid to check to see if there is any leukemia in it. Then they inject chemotherapy meds into the spinal fluid to help destroy the leukemia cells if there are any. They did this the day Matthew was discharged from the hospital after he relapsed and it helped with these same symptoms. Dr. Wilson said that he would repeat the LP if it would help Matthew be more comfortable. Anyway, the fact that Matthew felt an LP would help, and since his platelets and hemoglobin had fallen quite a bit last week and the nurse felt that he may need blood and/or platelets this week, we went to the clinic this morning to have his blood drawn.

His counts were:
Hemoglobin 7.7 (normal 13.8 - 17.2)
Platelets 25 (normal 140-440)
WBC 307.5 (normal 3.8 - 9.8)

They went ahead and gave him a unit of platelets and then Dr. Wilson did the lumbar puncture. The spinal fluid was clear, no leukemia cells, and Matthew got chemo in the spinal fluid. (Tonight he already says that he feels better.) Then they gave him a unit of Blood.

Matthew has a central line that is in his chest that has two tubes (lumens) for blood draws and to get medicine/blood. One is white and the other is red. This keeps him from continually having to be stuck. The white tube (lumen) quit working last week and they put some medicine that dissolves clots into it when Matthew first got down to the clinic today. The hope is that this will clear it out and it will work again. The red lumen worked fine. They drew his blood out of it, gave him platelets, and then while they were giving him the blood, they tried to see if the medicine cleared the white lumen. While they were working with the white one, the red one kept acting up, so they just left the white lumen alone. When they were done with the blood, they flushed the red lumen.

When we got home from the clinic, I went to give Matthew some IV Morphine through the red lumen, and it wouldn't work! Now we can't get either one to work. I called the hospice nurse on call, and at first she told us to take Matthew down to the ER tonight to have them see if they could get them to work, but that is the last thing Matthew wants to do tonight. Dr. Wilson said that he could take his medicines orally tonight, and Matthew will go back down to the clinic in the morning to see if they could get the line working :( Matthew is so discouraged - he has had that same line since the beginning (March, 2000), without any problems and it has to stop working now?

Dr. Wilson changed one of Matthew's medicines in hopes of trying to lower his white blood count and hopefully make Matthew feel a little better. He stopped the Gleevec (the new chemo drug that they weren't sure would help) and started him on another mild chemo drug (Hydroxyurea or Hydrea) in hopes of dropping the WBC a little. It will take several days to start working, but hopefully it will help Matthew. Not a cure, just make him more comfortable.

It was hard being down in the clinic and seeing all the other patients. There were many that we know that are doing well. I can remember when Matthew was at this point - getting chemotherapy which was keeping him in remission. How I wish that our main concern now was managing the side effects of the chemotherapy and worrying about his ANC being too low and him running a fever. One of the patients had a Bone Marrow Transplant the same time as Matthew and was there and doing well. Not that I am not glad that the others are doing well, it was just hard being there. Now we have to go back tomorrow.

I guess you can tell that I am a little down tonight. Hopefully a nice warm bath and a good nights sleep will work wonders. Please continue to remember Matthew in your prayers. We love you all.

Sunday, July 07, 2002 at 10:28 PM (CDT)

Hope you all had a good weekend. Yesterday was an okay day. We went to see "The Bourne Identity" in the afternoon. Matthew didn't feel very good, so I don't think that he enjoyed it as much as he could have. His stomach felt so distended and it was making it hard for him to breathe. We fixed tacos for dinner, then just watched TV.

This morning Matthew didn't feel up to going to church, so we stayed in bed late and then he wanted omlettes, so he helped me fix them. They were pretty good, if I do say so myself. This afternoon, Matthew continued to have trouble breathing. When I was fixing dinner, he got really sleepy and didn't feel very good. I helped him down to my bed. He didn't want to eat when we did, but later he ate some dinner in bed :) He is feeling kind of scared tonight and is very tearful. We have been trying to reassure him, but I still think that he is scared. We watched TV for a while, then he decided he was ready for bed. Dirk is laying with him a while so I could update his web page. Please say an extra prayer for him tonight that he can find peace and comfort.

Friday, July 05, 2002 at 01:44 PM (CDT)

I hope that everyone had a good Fourth of July. Ours was good. Grandmother Fackler, and Grandma and Grandpa Hallemeier came over for BBQ. Matthew was hungry for hot wings, so we decided to have them for an appetizer, then BBQ hamburgers and brats for dinner. Early in the morning, Matthew mixed up his "special" hot wing sauce. He likes them very HOT, so he fixed some for him (and Grandpa) and I fixed some for the rest of us. I tried Matthew's, but his were too hot for me. After dinner, we sat out on the deck and watched fireworks. Dirk and Christopher had gone to get some fireworks, but our neighbors had such wonderful displays, that we definitely did not miss anything by not going to a "professional" display. The only problem was that they were going on all around us, and we got tired looking from side to side :)

Matthew watched for a while outside, but the humidity and all the smoke in the air was making it hard for him to breathe. There were still fireworks going on in the neighborhood at 11:00 (way past our bedtime). Matthew ate good, but his abdomen is beginning to be distended and makes it a little uncomfortable for him. He is hungry and wants to eat, but it makes it more uncomfortable. I think it is probably the leukemia multiplying in his liver and spleen. He had this problem when he was first diagnosed, and he said that is what it feel like.

Debra, the Hospice Nurse, was out this morning. Matthew has been having some neck/back pain and he was asking if Dr. Wilson could do a lumbar puncture and give him some chemo in the spinal fluid to see if it would make him more comfortable. When the leukemia count gets so high in the blood, it sometimes can get into the spianl fluid. Since Matthew's hemoglobin and platelets are dropping, and he probably will need blood and/or platelets on Monday, the plan for now is to go to the clinic on Monday morning for his blood to be drawn, then if Dr. Wilson feels the lumbar puncture would help, we will already be there. We will also be there if he does need blood or platelets. This would not be a cure, it would just make Matthew more comfortable.

We don't have any plans for the weekend. I guess we will just take things as they come. It is so HOT, maybe a movie.

Tuesday, July 02, 2002 at 10:14 PM (CDT)

We had a good day today. Matthew has felt pretty good. We didn't do much, just hung around. Dirk took off work today, and we cooked hamburgers on the George Foreman Grill for lunch.

Usually in the morning, after Matthew eats breakfast, we lay in my bed and watch TV while he gets his IV antibiotics. This morning, he asked if we could stop treating him like he is sick. I guess he is tired of us always asking if he is okay, or asking him how he is feeling, worrying about him doing too much, etc. He just wants to be treated like a normal kid. I will try, but it is just second nature to worry about your kids.

Hopefully, tomorrow will be another good day for Matthew. He has already asked if he and I can go out for lunch tomorrow. Got to love those steroids!! Thank you for all the prayers! We love you all.

Monday, July 01, 2002 at 02:44 PM (CDT)

We had a rough time last night. I guess that since Matthew has been feeling so well, it is easy for some denial to set in and forget that he is as sick as he is. After dinner, Matthew started to feel short of breath and dizzy. He went upstairs to the family room to sit in the recliner, but couldn’t get comfortable. He tried using the oxygen, but it didn’t help with the trouble breathing. He went down to our room to try to lay in our bed and watch TV, but still was not comfortable. After going upstairs again, then back down to our bed, he finally lay down. I could tell he was anxious and worried. He said he was really tired, but I know he was afraid to close his eyes. He was very tearful and I asked him if he was afraid he was going to die, and he said that he was. He said that he wasn’t ready. I told him that I was there with him and that Jesus was with him and would comfort him. Finally, I got him settled in our bed and he wanted some Morphine for pain and some Benadryl to help him relax. I offered him something to help calm him down, but he didn't want it. He finally dozed off. I know it was frightening for him (and us). After he slept for a while, he woke up and was going to go up in his bed. I went to see how he was, and he was on the computer. He seemed fine then the rest of the evening. He even had Dirk fix him a Root Beer float.

Today, he seems to feel okay. One of the Hospice Nurses, Nikki, came by this morning to draw his blood and to check on him. She said that his lungs and heart sounded good. She called later and gave me the results of his CBC:

Hemoglobin 9.6 (normal 13.8 - 17.2)
Platelets 22(normal 140-440)
WBC 239 (normal 3.8 - 9.8)

His hemoglobin and platelets are dropping, which we expected since the leukemia is taking over his bone marrow so that it can't produce Red Blood Cells (hemoglobin) and Platelets. They will probably wait until his Hemoglobin gets to 7.0 or less before they consider giving him blood. This would just be for comfort measures, only. His White Blood Count continues to go up as the leukemia takes over.

Matthew continues to feel fairly comfortable. His stomach has not been as bloated since we have been using the stool softeners to help move things through. Nikki said this morning that frequently what happens is that as Matthew's WBC gets higher, he will become confused and sleepy. I guess this is good because hopefully he won't be as anxious. For now, we will enjoy every day we have. Please continue to keep him in your prayers. He needs them so much right now.

Sunday, June 30, 2002 at 03:24 PM (CDT)

I thought I would update Matthew's page while I have a minute. Matthew has had a rough day or two. He is pretty miserable. He is on steroids to help with the pain and hopefully try to keep the amount of leukemia in his body a little less, but they make him so hungery. Don't get me wrong, I love to see him eat, but he is hungry ALL the time. His pain is usually pretty much conrolled with the IV Morphine, but it is very constipating and just slows everything down. Since he is eating so much, and everything is just slowing down, he is so bloated and uncomfortable. He says that his stomach feels so full. But...he doesn't want to take the morphine for pain because it causes him to be so bloated when he eats. And he is trying not to eat because it makes him feel so bloated. But he is so hungry all the time. So, it is a vicious cycle. I am trying to get him to drink more fluids to help, and also a stool softener or laxative to hopefully help move things through so he will take the morphine he needs for the pain. I don't want the pain to get so bad that it will be hard to get under control. It is so hard to see him so miserable.

He was up several times last night from nightmares. He usually wakes up several times during the night, anyway, because his head just starts sweating and his pillow gets soaked. This happens throughout the day, also, so Dirk got him a little battery-operated fan to carry. He keeps it with him all the time and uses it whenever he starts to sweat. It seems to work pretty well. The sweating stops as quickly as it starts, with no rhyme or reason - his head will just be soaked.

Dirk, Julie, and Christopher went to church this morning, but Matthew and I slept in. We fixed hamburger helper for lunch (you know he is hungry if he will eat that!) and then Julie and Christopher went to the mall. Matthew and I went to Blockbuster and rented a video game for the Play Station 2, and he is playing it right now. I think that it helps get his mind off how uncomforatble he is. Julie is planning to go back to Murray, Kentucky, for the week to help with the big Fourth of July Celebration they have. Depending on how Matthew is doing, she may stay a little longer. Christopher goes back to class and work this week, so it will just be me and Matthew during the day. Dirk is planning to take off at least Tuesday so maybe Matthew will feel up to doing something.

The Hospice Nurse will come tomorrow to check Matthew's CBC. I want to know what his White Blood Count is, but on the other hand, I don't want to know. We are just thankful that the Lord has given us this precious time to spend with Matthew. Please continue to keep him in your prayers, that he will find comfort and peace.

Friday, June 28, 2002 at 10:01 PM (CDT)

The last few days have been fairly uneventful, other than doing things that Matthew, Julie, and Christopher want to do. Matthew is having a little more pain today, but overall has been doing well. He continues to amaze me with his strength.

Yesterday for lunch, Matthew wanted fajitas, and he wanted to help make them. We went to the grocery store and bought all the ingredients. He sat up at the counter and cut up the vegetables, while I cut up the chicken. We both cooked them, and I must admit that they were the best attempt so far. After lunch, we went to buy some fireworks (yes, they are legal in our county) and last night we lit them. Well, Julie and Christopher lit them, the rest of us just watched.

We ate lunch with Grandma and Grandpa Hallemeier today. After lunch, Mary, one of Matthew's favorite nurses, and Ann, one of the nurses who took care of Matthew when he was first diagnosed came over. Anne left Children's after Matthew had been going there for about a year, and we really missed her. They both have babies about 3 months old, and they brought them. Julie and I had fun holding them and we enjoyed the visit. Matthew made some of his "famous" lemonade and served them. Thank you, guys!

Tonight we hung out at home and watched "A Beautiful Mind." It was good. Christopher had seen it before, but the rest of us haven't. Matthew watched about half of it, and kind of lost interest, so he went in on his bed and played with the Game Boy.

Hope that you all have a good weekend. It has been too hot here to do much during the day, but it cools down a little at night. Thank you again for all the prayers coming our way. I hope I didn't have any of you worried because it took so long to post, but with all the kids home, it is hard to get time on the computer :) Julie will go back to Murray, Kentucky, next week to work for the big Fourth of July celebration, but she is close enough that she can come home if we need her too. Christopher goes back to work, so Matthew and I will have a quiet house during the day next week.

Tuesday, June 25, 2002 at 08:33 PM (CDT)

Sorry I didn't get this site updated yesterday. Since Matthew is still feeling pretty good, we have been trying to spend time doing things he wants to do. Debra, the Hospice Nurse, came out yesterday to draw Matthew's blood. Matthew and I discussed whether we wanted to know what the WBC was, and decided that we did want to know. His labs were:

Hemoglobin 11.4 (normal 13.8 - 17.2)
Platelets 51(normal 140-440)
WBC 134 (normal 3.8 - 9.8)

I was actually surprised that the WBC wasn't higher. Maybe I was just preparing myself for the worst. His platelets actually went up and his Hemoglobin remains good. I think that everyone is amazed that Matthew continues to feel so well. He has always looked good, even when he was very sick. He is such a strong young man.

Last night we watched "Blackhawk Down." We had seen it at the movies, but Matthew bought it last week. It was a nice relaxing evening.

I know that everyone always says how strong I am, but I really am not. I am just doing what needs to be done. I had a real hard time Sunday night. I just felt like I can't do this. Luckily, Dirk was right there with a strong shoulder to cry on. He is such a source of strength for me. I love you, Dirk. I guess it is hard to accept Matthew dying when he looks so good. I made an appointment with a grief counselor this morning. She was good and helped me a lot. She is a Christian woman, which I really need. I think that she will be good for me to talk to. She actually was crying along with me when I was telling her about Matthew. She told me to call her at any time that I needed to talk, and offered to come out and talk to Matthew if he wanted someone to talk to :)

Dirk took off work today and we went out to eat. Since Christopher took this week off work, he is home by 10:30 after his class, so everyone was home. It is nice to have the family all together. I treasure every day that we can be together.

I am going to try to post the pictures that Matthew finally let me take Sunday. He really doesn't like the way he looks because his face is fat from the steroids. He talked about stopping them Monday, and the Dr. said that if he wanted to he could. About 3 pm he was complaining about increased pain, so we gave him 1/2 the dose. It seemed to help some, so we will do that for a while. Otherwise, his pain seems to be pretty well controlled. He cut the dose of his longer acting pain medicine because it was making him too drowsy and he said that he couldn't do the things he wanted to do. I asked him about the pain, and he said he could deal with it.

Thank you again for remembering our family in your prayers. this would be really hard without the support we get from all of you.

Sunday, June 23, 2002 at 10:30 PM (CDT)

What a wonderful weekend we have had around the Hallemeier house. Hope you all had good weekends too. We are so blessed to have had this time with Matthew. He has felt pretty good all weekend. Today, especially, he seemed almost like the old Matthew. It was hard to believe that he is as sick as he is, but I know that he is. I am totally amazed with his strength.

Yesterday afternoon, we went to see "The Sum of All Fears." Matthew slept through the first 30 minutes, or so, but then was awake and enjoyed the movie. Then, we went out to eat at one of our favorite Italian restaurants. We were going to watch a movie when we got home, but some of us were too tired.....

This morning, we all got up and went to church. It was amazing to see the difference in Matthew between this Sunday and last. He seemed so much stronger. After church, we came home and I actually got everyone to sit down for some pictures. They really turned out great. There are some good ones of the whole family with Brad too, and some good ones of the three kids. I will post some in the next day or so. Matthew helped me fix dinner. We had BBQ. After lunch, Brad left to go back to Atlanta. We were all sorry to see him leave. We all found a couch, chair, or bed and took a nap.

This evening, my sister Kim, and her family came up from Rolla to see us. My mom also came over and they brought sub sandwiches and pie. It was nice enough to sit out on the deck after dinner. Tonight, after everyone left, I was sitting in the family room with Matthew, and he said that he wished that he didn't have to have blood drawn tomorrow. I asked him why, and he said so he wouldn't know how many leukamia blasts he had. I asked if he wanted me to not tell him, but he said that he wants to know. I told him that it didn't matther how many blasts or how much leukemia he had in his body, what matters is how he feels.

We are truly thankful to have had such a great weekend with Matthew. I know that even though he looked and felt so good this weekend, I know that this is just temporary, but we will take evey day we can get. Matthew is downstairs getting something to eat. The steroids are making him really hungry. He said that he hates the way the steroids make him feel and that they make him eat a lot and his face gets all fat. He wants to stop taking them, so we will talk to Debra, his Hospice Nurse, tomorrow. I am sure that they will let Matthew stop them if he wants.

Saturday, June 22, 2002 at 11:34 AM (CDT)

What a sunny, HOT day in St. Louis - headed for the mid to upper 90"s. Someone asked how old Matthew was. He turned sweet 16 on March 29 - 3 days after his Bone Marrow Transplant.

Yesterday was a quiet day. Matthew was pretty groggy most of the day - he did not get a good nap in the afternoon, so he and I went to bed early last night, after watching "Caddyshack" as a family. For dinner, Matthew wanted us to cook something together, so we made english muffin pizzas and each put the toppings on that we wanted. We have always sat down to eat as a family, and as we were sitting at the table last night, I couldn't help wondering what Matthew was thinking - I wonder if he was thinking about how he would miss sitting around eating together, or when we talk about Julie's wedding, does he think about the fact that he will probably not be there...... I know that we can't not talk about things in the future, but I hope that he realizes that he will be in a much better place and will be watching from above and thinking of us and of course he will always be close to us in heart, prayers, and thoughts. I was talking to Dirk after dinner, and he was wondering the same thing about Matthew.

One of our neighbors brought a cold cut plate, buns, lettuce and pickles, potatoe salad and some fresh strawberries and whipped cream last night for dinner. We saved it to have for lunch today and to snack on over the weekend. I am still in awe at all the kindness that has been showered down upon us from people we don't even know. God Bless you all. One of the girl's from Church and her mom came over to help me clean yesterday. I did the vaccuuming and hard wood floors and they worked on the bathrooms. And she brought home made chocolate chip cookies, too!! It was so nice to have the house clean for the weekend when Brad (Julie's fiance) is in town. He got in last night at about 7:30 pm and Julie and he went out to eat for dinner.

Yesterday, Pastor Arle also came over to visit. Matthew was not real attentive, but I know he was listening and he said a prayer with Matthew. Pastor Arle also talked with me, which helped a lot. Julie and Brad are meeting with him this morning for pre-wedding counseling.

Last night Pam, the nurse from my office who was kind enough to fill in for me so I could take this time off, brought a huge basket from all the frinds I work with and also the doctors. It was filled to the top with goodies - cookies, chips, candy, soda, (even some bottled water and diet Dr. Pepper for me!) several Block Buster gift cards. Julie and Christopher, especially, loved looking at all the goodies. Thank you all. I miss you and love you all.

Matthew was up a lot during the night, but this morning, he woke up cheerful and says he feels pretty good. I think he feels better than yesterday, but I also think he is putting on a good front for the family. After Julie and Brad come home from meeting with Pastor Arle, our plans are to eat lunch, take a little rest, then go see "The Sum of All Fears" at an early afternoon show. Then Matthew wants us all to go out to eat. I will let you know how the day was. Thank you all for taking the time to sign his guestbook. We really appreciate all the prayers being showered down on us from all of you. We love you all.

Friday, June 21, 2002 at 08:42 AM (CDT)

Yesterday was a rough day for Matthew. When he woke up in the morning he felt pretty good. After lunch, Debra, the Hospice Nurse, came out to the house to check on Matthew. Matthew expressed his thoughts of whether if he restarted several of the "milder" chemo drugs, if it would kind of suppress the leukemia. He also is having a hard time sleeping if he is tired and feels like taking a nap. Debra called Dr. Wilson while she was at our house, and he said that as aggressive and mutated his leukemia is, that it is probably resistant to all the chemo drugs he has had in the past. He did order a different med to help him sleep. We will see if it makes a difference.

After lunch, he took a good nap on our bed, but when he woke up, he hurt really bad. Especially his back and upper legs. He said it was boney pain like he had when he was first diagnosed. I think that it is because he is getting more and more leukemia cells in his marrow and blood. I gave him the maximum amount of morphine that was ordered, but it didn't do much to help. I called the hospice nurse on call, and she checked with Dr. Wilson, and he said that we could increase his morphine dose. Matthew is not ready to start the morphine going continuously because he would have to carry a pump and have fluids going all the time. Plus, he says it makes him too sleepy and "out of it." He went to bed fairly early, and woke up about 3 am and wanted benadryl. This morning, he is still hurting, but not quite as badly.

While Matthew was sleeping yesterday, he looked so cute. I snuck in and took a picture of him. I will try to get some developed soon so you can see. Julie and I went through old pictures and pulled some of the cute ones of Matthew. I may post some of them so you all can see what he looked like as he grew up. I will warn you, he was a cutie!

Right now he is sleeping in on our bed while his antibiotic is going in. Then he wants some Morphine. Need to go - he is called me.

Wednesday, June 19, 2002 at 10:34 PM (CDT)

Boy this one is late - Sorry. We did very little today. Dirk and I had an appointment in the morning. We got home about noon and brought Julie and Matthew Jack-in-the-Box. This afternoon, Matthew wanted me to lay down with him and take a nap. We laid on my bed and I think Matthew slept for a while. I could not, but I did rest.

Our neighbor, Joanne, brought dinner over tonight. She has been the coordinator for the neighbors bringing food. She has been wonderful - we are blessed with such nice, thoughtful neighbors. She has dinners planned this week. Next week, our church will bring dinners. I am truly amazed at how so many people have volunteered their services at this time when we just want to spend time with Matthew, not worry about cooking, etc. Julie's fiance, Brad, is coming up from Atlanta this weekend, so I will probably cook one night and we will go out to eat the other.

Christopher told us at dinner tonight that he is going to take next week off. Hopefully Matthew will still feel well enough to do some fun things.

Thanks for all the prayers. They mean a lot to us.

Tuesday, June 18, 2002 at 09:21 PM (CDT)

We continue to be amazed at all the prayers, generousity, and good thoughts coming over the guest book. You guys really make us feel loved and cared for. Thank you.

Yesterday afternoon, Matthew decided he wanted to make cookies. I didn't have much in the cabinet to make cookies with, but Julie had brought a package of the freezer slice and bake sugar cookies. Matthew and I made them, and he put chocolate icing and sprinkles on some of them. He did a good job and was feeling pretty good.

Last night, we had the BBQ beef, baked beans,cole slaw, buns and brownies that we received Sunday evening. Grandmother Fackler came over to eat. It was delicious. After dinner we sat out on the deck for a while and Matthew made an ice cream float and ate it out on the deck with us.

This morning, we were lazy again, and stayed in bed watching TV until about 10:30. Matthew decided that he wanted to go eat lunch at this restaurant (Winery of the Little Hills) down on historic main street in St. Charles. We didn't get a really close parking place, so we walked a little way. Matthew was complaining of feeling short of breath when we got seated. He did eat pretty well. After lunch, he wanted to stop by Best Buy and look at DVD's, CD's and a computer game. He has some money that he has saved up from his birthday, so he brought some DVD's, CD's and a computer game for him, and he also bought "Caddyshack" for a late Birthday/Father's Day present for Dirk. When we got home, Matthew was really tired, and sat in the recliner with his oxygen on. I think it is hard on Christopher because he has a college course in the mornings and then works in the afternoon, so he doesn't get to do the things we do during the day. But that is the time that Matthew usually feels the best.

Matthew came downstairs for dinner (a neighbor brought us a crockpot with Roast Beef, Potatoes, and Carrots to cook. It was very good and the kids liked it. (of course Dirk and I liked it, but we are not picky!)

After dinner, Dirk and Julie were going to go to the grocery store, and Matthew wanted to go with them. They were gone about 45 minutes and Matthew really looked whipped when they got home. I am afraid he is overdoing it, but I think that these are normal things that he wants to do. Also this evening, one of Matthew's favorite nurses from Children's, Mary, came over with her baby. She visited with me while they were at the store, then stayed a while to visit with Matthew. The only problem was that he was so tired that he was dozing in the chair.

I was feeling pretty down last night. I was thinking of all the things that Matthew has not gotten to do or will not get to do, the normal everyday things that we take for granted - like falling in love, having your heart broken, meeting the right person to spend the rest of you life with, getting his driver's license and getting to drive BY HIMSELF, Getting Married, raising children, and seeing grandchildren. Then I start thinking about what it will be like next week, or next month, or even next year. That is really hard. I have decided that I can't think of those things, I just have to concentrate on today and what we can do with Matthew to make it a good day for him.

Julie's fiance, Brad, is coming up to visit this weekend. It will be good to see him, and Matthew has asked several times the last week or two when he was going to come to St. Louis. I don't think he wants to say "I want Brad to come up," but obviously it is important to him. Hopefully it will be a good weekend. Please continue to keep Matthew in your prayers and close to your heart.

Monday, June 17, 2002 at 01:40 PM (CDT)

Matthew is asleep in the recliner with the TV on, so I will take this oppotunity to update you on what is happening. I am truly amazed at how thoughtful Matthew can be, even with all that he is going through. He is so sweet, we will miss him so much. At night, I usually lay down with Matthew when he goes to sleep. I usually doze off, too, and wake up around 1:00 am and go back to my own bed. Last night, I fell asleep with Matthew, and I kept having this same bad dream. I would wake up for a minute, and when I fell asleep, it would continue. I must have been restless enough to wake Matthew up. He woke me up and asked if I was okay. I said that I kept having the same bad dream. He asked if he could go get me something cold to drink from downstairs. I told him that I didn't want him walking down the steps at night, so I asked if he wanted anything. He said that he would like a cold creme soda. When I got ready to go downstairs to get it, he said "while you are going downstairs, could you give me some IV benadryl :) (Is he slick, or not?)

After I brought him the creme soda and gave him some IV benadryl, he said for me to go back down to my bedroom and he would take care of me in the morning. I told him that it was okay, but he insisted that he wanted to take care of me.

This morning, when he came downstairs, I was still in bed. He came in and asked me if I wanted him to fix me a cup of coffee and bring it to me in bed :) I told him no thank you and that I would get up and get breakfast. I offered to fix him french toast, but he said that I didn't need to do that, he would have cereal. After we ate breakfast (or rather he ate breakfast and I had a cup of coffee), we went back to my bed and climbed in with our jammies to watch TV. We were still there when Debra, the Hospice Nurse, came to draw Matthew's blood. Oh, well, some days you need to just hang around in your pj's and do nothing.... It was nice.

Debra called me later with Matthew's lab results. They don't do a differential, so I don't know what his ANC is. It really doesn't matter, because it won't change things. They especially want to check his Red Blood Cells and Platelets to make sure he doesn't need a transfusion. His labs were:

Hemoglobin 12.0 (normal 13.8 - 17.2)
Platelets 37(normal 140-440)
WBC 78.0 (normal 3.8 - 9.8)

His white count is rather high (he was 62.5 at diagnosis), but I have heard of higher in other kids. Besides, it doesn't really matter what his WBC is, what is impotant is how Matthew is feeling. I guess this is why when the kids are in Hospice, they don't draw labs on a regular basis - they really don't mean anything and will not change the outcome. Plus sometimes you just don't want to know. The WBC is going up because as the leukemia takes over in his bone marrow, it forces the immature WBC's into the blood stream. These are not white cells that fight infection or anything, they are just very immature WBC's.

Frequently, Matthew has also been breaking out in a sweat. This is very uncomfortable for him, especially when he wakes up in the night and his pillow is soaked. I asked Debra about this, and she said that it could be the steroids or it could me that as the leukemia takes over, the body's mechanism to control temperature doesn't work as well. At least he seems to be fairly comfortable and usually does not require any morphine at night. He seems to be breathing easily, and the cough and wet sounds he had when he breathed are gone. He has decided that he doesn't want to take as much long-acting pain medicine, because he feels that it is making him more sleepy and he dozes a lot. He gets frustrated because when he is so sleepy, he can't do the things he wants to do. I made sure that he understood that if his pain got any worse, we would up the morphine and the oral long-acting pain meds.

Even though I try not to dwell in the future and try to enjoy the time we have with Matthew now, sometimes thoughts creep in of what we will do after he is gone. It is so hard, I don't know how we will make it. I know that he will be safe in Jesus' arms and will have no pain and suffering, but it is still so hard.

Dirk went to work today, and I know it is hard for him to leave when we are here, but he said that sometimes it takes his mind off things for just a little while. Luckily his job allows him to work when he needs to and he can usually take off if he wants. Christopher works during the day, but he is home at night, and Julie is home. It is so nice in the evening to have my family all here together and safe.

Thanks for all the Father's Day well wishes for Dirk. It means so much to him. I am constantly amazed at the love and prayers that are coming, via the guest book and to me personally, from people all over the world. It is awesome to think of all the people praying for Matthew. We feel so lucky and so loved. Thank you.

Sunday, June 16, 2002 at 08:00 PM (CDT)

Happy Father's Day! Hope you all had a good day.

Yesterday, Matthew slept in the recliner most of the day. He has been using the oxygen more and seems very tired. We had invited Dirk's brother, Dale, and his family to come over so they could see Matthew. Matthew wanted to meet them at a restaurant, so we met at Wilikers with them and Grandma and Grandpa Hallemeier. I guess Matthew felt safer there than at home, because he wouldn't be the center of attention. After dinner, Dale, Becky and their three boys said good bye to Matthew and they all gave him a big hug. It was rough.

Before Matthew went to bed last night, Dirk asked Matthew if he wanted to go to church with him in the morning. I was surprised when Matthew said yes. I didn't hold my breath because I didn't know how he would feel in the morning. When I took his medicines up at 6:30 today, and asked him if he wanted to go and he did. Christopher went too.

On the way to church, Matthew was dozing in the car. He asked me if anyone would notice if he fell asleep during church, and I told him that no one would know, and besides, I told him he probably wouldn't be the only one sleeping in church :) He did sleep most of the service with his head on my shoulder. He woke up a few times and was confused, but he gave me a smile and went back to sleep. When it came time for communion, I told Matthew if he didn't want to go up to the alter for communion, that I would sit back with him, but he wanted to go. He looked so proud walking up to the front. He stumbled a little going up the steps, but the usher caught his arm and helped him up. He knelt between Dirk and I. That was the best Father's Day Present he could have given Dirk.

Since Matthew is on steroids again, he is hungry a lot, and started asking about lunch as soon as we left church at 10 am! He wanted to go to this Mexican restaurant, El Mauguay, so we ate lunch there. Julie came home in time for dinner. She went to a wedding in Kentucky with her fiance, Brad. No one felt like cooking, so we ordered Dominoes Pizza. While we were waiting for the pizza to come, one of the families from church brought us dinner. It was BBQ pulled pork, buns, baked beans, cole slaw and brownies, so we have dinner for tomorrow night.

Matthew seems to go from being tired and sleeping for a while, then he wakes up and his alert for a while. He hates the fact that he is so sleepy all the time because he can't do the things he wants to do. Please continue to pray for Matthew that he can find comfort and peace.

Friday, June 14, 2002 at 09:37 PM (CDT)

The last two days have been a little hectic, but at least we are home. Yesterday morning, Debra, Matthew's case manager for the Hospice Program (Wings) came out to check on us. Matthew was tired, but he did talk to her a little. Dirk took the day off, and Julie was home. Matthew has been pretty hungry since he is on the dexamethasone (steroid), but his mouth and throat are so dry, that it is hard for him to eat much. It seems like the food sticks in his thoat. He ate a bowl and a half of Reeses Puffs for breakfast, and a grilled chese sandwich and macaroni and cheese for lunch. Matthew slept most of the afternoon, he is so tired and weak. For dinner, he wanted to go to Macaroni Grill, so we went for dinner. Poor Matthew was so tired, that he slept in the car going and then after we ordered and were waiting for food, he was dozing as he was sitting in the booth. When we were done, he was pretty exhausted, so we came home and got ready for bed. As we were laying in bed watching TV, Matthew asked me if he would know when he was going to die, or if he would just die in his sleep. I told him that it was different for everyone, and we would talk to Debra, the Hospice Nurse, when she comes Monday. Matthew said that he hopes he knows when it is near, because he wants to go down to the hospital. I guess that was what he meant when Dr. Wilson came to tell him goodbye, and Matthew said it is not goodbye and that he would be back. I think he had a hard time sleeping last night because I think he was afraid he would die in his sleep :( It is sad that someone as young as him should have to worry about such things. But he definitely knows what is happening, and he still says he is not afraid.

He woke up this morning starving, so he ate some pancakes. Julie left for a wedding in Kentucky, Brad was going to meet her there. She will be back for Fathers Day. I worked cleaning the house and doing laundry while the two women that I am having clean were there. I asked them to do the bathrooms and dusting, and I did the hardwood floors and vaccuuming. They were reasonable, and looks like they did a great job. Hopefully they can continue to come for a little while.

In the afternoon, Jolene, the nurse from the clinic who was Matthew's primary nurse when he was first diagnosed came to visit. She works for the company that is doing Matthew's IV medicines. She came out to deliver the medicines, and stayed for a while to visit with me and Matthew. It was really good to see her. Then the Social Worker from the Hospice Program came and talked to me. She wanted to meet Matthew, but he was sound asleep in the relcliner. He wanted BBQ hamburgers for dinner, so Dirk cooked them while I made french fries. It was good, but Matthew couldn't eat much because the food seemed to stick in his throat. His cough and breathing have been better today, which is nice to see. But he has used his oxygen a little more. Hopefully the sinus infection and whatever he had going on in his lungs is going away.

We are truly blessed with all the people who have signed his guestbook. It is amazing how his web site has been passed from person to person all over the US. Your posts mean so much to us. Please continue to pray that Matthew is comfortable and can find peace. There are so many of you that I would love to e-mail back, I just don't have the time right now. We love you all.

Wednesday, June 12, 2002 at 10:49 PM (CDT)

Wednesday, June 12, 2002 at 10:21 PM (CDT)

Hey, sorry it took me so long to update the page today. I don't know where the time went. We are still trying to get situated at home and a lot of people have been in and out. We got home at about 3:00 yesterday afternoon. I called the Hospice nurse so she could come over and get Matthew "opened" with their program. She stayed for a while. Then the company who is doing the IV antibiotics, IV Morphine, and IV benadryl, came and delivered their supplies. I am having a lot of trouble finding room in my refrigerator for everything :) Dirk, his Dad and Julie had picked up the recliner and had it all ready. They had it to one side of the room, so me and Matthew decided to put it in the middle so it faced the tv straight on. I had no food in the house, and Matthew didn't feel like hamburgers anymore, so we ordered pizza for dinner. I is so nice to sit down together as a family and eat together. Before it was just Dirk, me and Matthew.

I had a really hard time coming home from the hospital yesterday. It just hit me that I was bringing my son home to die. This is so hard....Then, when Hospice came out, they had the DNR order from Dr. Wilson. This lets any ambulance service know not to resusitate him - no intubation, no CPR, etc. That really was hard to see. I put it in the back of the folder so I would know where it was, but am not looking at it whenever I open the folder.

Dr. Wilson and Dr Crawford came in to say goodbye to Matthew. Dr. Wilson is going to continue to follow Matthew in hospice. Usually it is the hospice doctor who follows the kids, but Dr. Wilson will follow Matthew. They are both wonderful Doctors and they have always been up front and answered all my questions, even when I knew they didn't want to tell me. They are both so knowledgable that I have always trusted their opinion.

I didn't realize how many meds and IV's that I would have to give Matthew. I am trying to get a routine down so I don't forget something. My house is a mess, still has things that we accumulated down at the hospital and brought home. The laundry is piling up. I decided that I cannot do all of my cleaning and still be there for Matthew, so I am going to see about having a cleaning lady come once a week and at least do the bathrooms and dust. It is very frustrating for me to not be able to keep my house neat. Plus I want to spend as much time as possibe with Matthew and the family, without having to stress over my house.

Today, the hospice nurse called to see if we wanted a visit today. I decided that it would help if I had a day to see how things go before they come back tomorrow. The Home Health people delivered the oxygen for Matthew to use when he feels he needs it. The Chaplain from Hospice came to introduce herself and kind of see where we were and to offer her help whenever we needed it. So it was definately not a quiet day.

The pharmacy delivered more meds. One of the IV antibiotics is only stable for 2 days mixed, so they will have to bring Meds every other day. Then, they sent the Saline and Heparin flushes with preservative in them, which Matthew is alergic to, so they had to bring me out some syringes and a bag of fluids to draw up some flushes myself.

Grandmother Fackler offered to bring sub sandwiches for lunch, but Matthew wanted to go out to Bandana's (BBQ) so we did that. It least he got out a little. He has been so worn out and dozing a lot during the day. His smiles come rarely, and I hardly ever hear him laugh. It is so sad.

I don't have daily labs to post, because they normally only draw labs periodically. I have asked them to draw them on Monday and Thursday, so they were going to check with Dr. Wilson. Matthew usually does not show any signs of platelets being very low, so this way we will know if he needs a platelet or Blood transfusion.

Please continue to pray for Matthew to have peace and be comfortable. I asked him tonight if he were afraid, and he still says he is not. Thank you for all the wonderful posts to the guestbook. We love you all!

Tuesday, June 11, 2002 at 10:25 AM (CDT)

Matthew woke up this morning hungry. I got him 2 pancakes and a donut with sprinkles. He ate about half of both. His labs today:

Hemoglobin 13.8 (normal 13.8 - 17.2)
Platelets 71(normal 140-440)
WBC 34.0 (normal 3.8 - 9.8)
ANC 7820
Blasts (abnormal/leukemia cells) 54 (normal 0)

The ANC is actually not really accurate now, because his white count is so high, that it causes the ANC to be higher. As you can see, his WBC has gone from 13.3 to 34.0, which is not good. This means that there are more leukemia cells. And the number of blasts rose from 44 to 54, which are leukemia cells that are crowding out the normal bone marrow cells causing the leukemia cells to spill into the blood. (sigh)

The good thing is that Matthew wants to go home today. So, they are giving the orders to hospice so they can get everything ready. Julie and Dirk and his Dad went to get the recliner this morning, so it will be there when Matthew gets home. He even wants BBQ hamburgers tonight :) I know that there are some of you who would like to visit Matthew, but please call first to see if he is up for visitors at that time.

Last January (2001) while Matthew was in the hospital, there was a boy (Ryan Grumish) in the room next to Matthew. I got to know his mom, Judy, while we were both down there. Yesterday, I got this card from her. I love this, and used to carry it around on a pocket card, but had lost it. Anyway, thank you, Judy, for sending this to me. It certainly makes me feel more comforted for Matthew, and our whole family.

Footprints

One night I dreamed a dream.
I was walking along the beach with my Lord
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand –
One belonging to me and one to my Lord.
When the last scene of my life shot before me,
I looked back at the footprints in the sand.
There was only one set of footprints.
I realized that this was at the lowest and saddest times of my life.
This bothered me, so I questioned the Lord about my dilemma.
“Lord, You told me when I decided to follow You,
You would walk and talk with me all the way,
But during the most troublesome times of my life,
There was only one set of footprints.
I just don’t understand why, when I needed You most,
You left me.”
He whispered, “My precious child, I love you and will never leave you –
Never, ever, during your trials and testings.
When you only saw one set of footprints, it was then that I carried you.”

Margaret Fishback Powers

Monday, June 10, 2002 at 08:34 PM (CDT)

Good evening, everyone. Sorry it took me so long to update. Matthew has finally settled in and is watching TV. When he is watching TV or sleeping is the time I get a chance to get on the computer. Matthew's labs today

Hemoglobin 12.8 (normal 13.8 - 17.2)
Platelets 64(normal 140-440)
WBC 13.3 (normal 3.8 - 9.8)
ANC 5054
Blasts (abnormal/leukemia cells) 44 (normal 0)

Yesterday, for Dirk's Birthday, Matthew wanted to wait until today to give him his birthday surprise - coming home. Matthew decided that he wanted to go home on pass one more time to see if he could be comfortable at home. I asked the hospice nurse to visit us so that she could maybe address Matthew's concerns and reassure him that he would be okay at home. The will be there within the hour if we page them. We got home at about 1:30 and the Hospice Nurse was there. Matthew didn't want to talk to her, so I talked to her for a while, and she answered some of the questions I had thought of. Then she went in and talked to Matthew. After she left, Matthew was resting on the couch watching TV, and he asked if he could stay home all night. I told him that the hospital would not let him do that unless he was being discharged to hospice. Then Matthew asked if we could get hospice to take over this afternoon. I said that it was too late to get everything set up, and all our stuff was down at the hospital. I suggested that we come back to the hospital tonight, and get them started arranging for hospice in the morning. I hope that he doesn't change his mind in the morning.

Julie got home at about 2:30. Matthew decided that he wanted to go out for dinner. Dirk took off early to go by the Lazy Boy store to get a recliner. We had intended to get one before now, just hadn't gotten the time. We thought that Matthew would be comfortable sitting in it. When I had asked Matthew several days ago about getting one, he said that he didn't want us to buy one just for him, that it really didn't matter. So Dirk will pick it up from
the warehouse tomorrow.

Christopher came home early to eat with us. Dirk was not feeling very well today, so he didn't want to be around Matthew and risk getting him sick, so he stayed away from Matthew and did not go out to eat with us. I felt so bad for him, because I know that he wanted to go, too, but was afraid to give something to Matthew. We got back to the hospital at about 7:00 pm.

Please pray that Matthew finds peace and comfort for the days ahead. I know a lot of you are concerned about Dirk or I not getting the rest and time out that we need. My feeling is that if I only have a little time with Matthew, I would hate to think later that all he wanted was some attention and someone to care for him and just sit with him, and I didn't do it.

Thank you all who e-mailed me ways to make a table on the web page. Hopefully I will get the time tomorrow to play with them. Thank you all for the good thoughts and prayers. You are all very important to us - even if we only know you as cyber-friends.

Sunday, June 09, 2002 at 04:58 PM (CDT)

(Part 2)
Please go back and read the previous entry from this morning. I worked with Matthew's labs to see if I could get them into a table by putting them in a word document then copying and pasting here, but the columns weren't straight and there were no lines. I will continue to try.

Also, since I have been in the hospital, I have completely lost track of the days/dates. I forgot to tell Dirk H*A*P*P*Y
B*I*R*T*H*D*A*Y
I LOVE YOU!!

Matthew has slept all day today. He would start watching TV and he would doze off, then wonder what was on TV. Matthew asked them to stop the 2 mg/hr constant morphine but keep the 5 mg boluses he has. He is hoping that this will make him more alert. So far, no change. The frustrating thing is that he forgets what he said and then thinks that I am making it up when I tell him what he said. I know that it is the morphine, but sometimes he gets mad at me. (sigh) Oh well, I have learned to just go along with him.

Sunday, June 09, 2002 at 11:14 AM (CDT)

Good Morning. Matthew had a pretty bad night last night. He woke up a lot when the nurse came in. This morning, I think out of frustration, he asked if we could go home and stay. I told him we could and reassured him that hospice would keep him comfortable and that he could come back to the hospital if he got scared or just wanted to be here. Then when his nurse came in today (Shelly) she asked him if he wanted to go out on a pass or anything today, and he said "no." Like I said, I think he was just frustrated with last night. We shall see. I want him to make the decision so that when he got home, he wouldn't say I made him go.

His counts today were:

Hemoglobin 12.5 (normal 13.8 - 17.2)
Platelets 76 (normal 140-440)
WBC 7.6(normal 3.8 - 9.8)
ANC 3876
Blasts (abnormal/leukemia cells) 42 (normal 0)

I wish there were some way to put a table in the update so that you could see the trend. If anyone knows how to do this, please let me know. I could copy it each day and paste it on ther new update and add the days labs.

Dirk was sick last night, running a temp of 101.1, chills and sweats, and some vomiting and diarrhea. He won't be down to see Matthew if he doesn't feel better today. This must be hard on him to not be able to see Matthew today.

Julie, his sister will be home tomorrow for a few weeks. It will be good to have all my family home, especially if Matthew decides to come home.

Matthew has been sleeping a lot lately. He looks so peaceful and sweet when he is sleeping, and I know that he is comfortable.

Saturday, June 08, 2002 at 08:36 PM (CDT)

Saturday, (Part II)
This morning when Matthew woke up, he said what do you want to do today? I said that I would do whatever he wanted to do. He said "How about go home." The doctors had already written an order for Matthew to go on pass with the morphine PCA. I called Dirk and asked him to bring the small CADD pump so that he could go home with IV fluids with the morphine going. We left at about 1:15 and Matthew and I stopped by Jack in the Box and he got a taco and soda, I just got a soda. We got home a little after 2pm. The nurses said that they would like us to be back by 7pm for his next antibiotic.

Matthew and Christopher watched a movie up in the bonus room and I sat out in the sun a little. It sure felt good! Matthew wanted chicken parmesan for dinner, so Dirk went to the store to get what we needed, then he and I cooked dinner. While the chicken was cooking, I took a long shower in my own shower. It is amazing how you miss the simple things that we normally take for granted.

Pastor Arle and his wife, Judy, called and asked if they could stop by and bring something for Matthew. They said that they didn't want to come in so that Matthew had a little quiet time. They brought this beautiful framed picture of a guardian angel. The wings and the whole picture is so beautiful. Thank you Pastor and Judy Arle.

Matthew ate about half a breast of chicken and noodles with sauce on them. Then I packed up and we went back to the hospital. Dirk graciously offered to clean up the kitchen. I certainly couldn't do this alone. I love you, Dirk.

After we got back, Matthew got ready for bed and is now watching a movie and eating a custard-filled donut. My hope is that if Matthew goes home on a pass several times, he will feel comfortable to go home on Hospice.

Saturday, June 08, 2002 at 11:32 AM (CDT)

Matthew's labs today:


Hemoglobin 12.4 (normal 13.8 - 17.2)
Platelets 76 (normal 140-440)
WBC 10.0(normal 3.8 - 9.8)
ANC 4800
Blasts (abnormal/leukemia cells) 31(normal 0)
Yesterday Grandmother Fackler and Jenny one of my sisters, came down to the hospital to eat lunch with me. They brought Jenny's grandson, Anthony, along. She couldn't bring him up to Matthew's room, so when we were done eating, Grandmother stayed with Anthony so that Jenny could come up for a minute and say "Hello" to Matthew. Also, Matthew, Julie and Chrisopher's art teacher from elementary school, Mrs. Hammerman, came down and brought me to inspirational books to read and some pictures she had of the kids from art classes.

Dirk and Christopher came down for dinner. We ate in the cafeteria, so you all know what kind of food we had.

Also, yesterday Mandy, his nurse from the clinic, brought over a box full of video tapes that she had borrowed from several friends for Matthew to watch. His nurse yesterday, Mary, brought 2 videos for him to watch also. We watched "Oceans Eleven" and she also brought "Harry Potter and the Sorcerers Stone." Matthew had told me he didn't want to see it, but we started watching it and Matthew and I both enjoyed it. Unfortunately we didn't get a chance to get it finished, so I will rent it another time to finish watching.

Last night Dr. Crawford came in and said that they had some of the cytogenetics results back. Matthew has numerous abnormalities. Some have an extra chromosome, some only have one, and some don't have any, and some translocations where the genes switched places. The cytogenetis lab said that they weren't finished, but it looked like there were more in the rest of the chromosomes. So, that is why it is so aggressive - it has mutated into many different types. Even if Matthew were able to tolerate more IV chemo, there is no way he would survive all the different, strong chemo drugs that it would take to try to get him into remission. Dr. Crawford feels like they probably wouldn't be able to get him into remission with the aggressiveness of this leukemia. So, plans are to get Matthew home on hospice. Matthew says he doesn't feel good enough to go home. I think it is because he feels secure here. Hopefully, I can get him to go home on pass for a few hours, and he will see that he can feel good at home. Plus the Hospice nurses are wonderful at controlling pain because they have a lot of experience with it.

After reading my post yesterday, I thought it kind of sounded like Dirk couldn't take care of Matthew. That is not the case, Dirk would love to do more for Matthew, but Matthew is going through this phase where he wants Mom there. It is kind of hard on me, and it makes Dirk feel bad because Matthew won't let him do a lot of things for him that Dirk would like to do.

Matthew had a good night. Only woke up three times and went right back to sleep. He has slept most of the morning so far. Hopefully he will have a good day. He did wake up about 7:30 and said he was starving and asked me to go the Barnes cafeteria and get him a jelly-filled donut, a custard filled one, and a long john with white icing. He only ate the jelly one, but that is good enough for me.

Friday, June 07, 2002 at 12:04 PM (CDT)

Matthew had a fairly good day yesterday, but had a hard time last night. I went home to get some things (including clean clothes) and Dirk stayed with Matthew. When I was at home, Matthew called me and said that his skin was burning and it felt like a chemical burn. I came back to the hospital and helped him take a shower, then he felt better. Over night, he was complaining of some “electrical pain” (that is how he describes it) in his knee joints and back from the steroids, and he was also coughing that wet sounding cough. We got him some oxygen to use because he was feeling short of breath when he coughed. He didn’t use it much, but it was there for him if he needed it. Mandy, Matthew’s nurse from the clinic, came by last evening with three rented videos from Blockbuster and about 8 previously viewed videos that she bought for Matthew. She also brought some home-made chocolate chip cookies. This morning, she left some more videos that she borrowed from some friends for him to watch. Then Mary, one of his favorite nurses, brought him 2 more videos. This morning, Mrs. Hammerman, the art teacher for the elementary school the kids attended, brought some pictures of Matthew, Julie, and Christopher from grade school for me. She also brought several inspirational books for me to read. I am in tears when I think of how thoughtful and caring everyone is to us. Thank you all for everything you do.

Matthew’s labs today:

Hemoglobin 11.0 (normal 13.8 - 17.2)
Platelets 93 (normal 140-440)
WBC 14.3 (normal 3.8 - 9.8)
ANC 6864
Blasts (abnormal/leukemia cells) 26 (normal 0)

Since Matthew is not eating at all, they have switched several of his antibiotics to IV because the gets nauseated taking the pills. This way they won’t make him sick to his stomach. Matthew did not like the fact that I left him for several hours yesterday afternoon, even though Dirk was with him, so I asked him if next time I went home, he wanted to go with me, and he said “yes.” I am hoping that once he gets home, he will see that he can be comfortable at home and hopefully come home on hospice.

Again, Thank you all for your kindness, good thoughts, and prayers. They mean so much to us now. I know that there are a lot of people who e-mail me that I would love to respond to, but right now I just don't have the time or energy to do it. Matthew needs as much of the time that we can give him right now. I hope you all understand. The same with the phone calls, I appreciate them and love hearing from everyone, but sometimes Matthew needs me more, so please forgive me if I tell you that I can't talk right now. I will call you back when I can. We love you all.

Thursday, June 06, 2002 at 01:33 PM (CDT)

Day +72
Yesterday and last night, Matthew felt pretty bad and uncomfortable. They have been trying to get the right combination of pain medicine to control it, but so far they haven't figured it out. Last night he was running a 102.4 fever, then this morning it was 101.2. They doctors said that sometimes the lueukemia could cause fevers, and I remember when Matthew was first diagnosed, he was running fevers. They have him on a morphine PCA now, which gives him a constant amount of morphine every hour continuously, then he can push a button for more if he needs it. This allows him to do it whenever he feels he needs it and he doesn't have to wait for the nurse to get it for him.

Yesterday they started giving the dreaded steroids in hopes of helping with the pain, and also because it usually kills come of the blasts that are in the blood. They gave him double the dose that he was getting periodically throughout his therapy. Last night he had a horrible time with pain and cramping is his forearms and wrists, and his calves. He said that this was normally how it felt when he was on the steroids. Today they cut the dose by about 3/4 (16 mg to 5 mg) to see if he can tolerate this. If it still makes him hurt so much, they will stop it.

Yesterday, our Pastor, Pastor Arle, came down to eat lunch with me and also to see and talk to Matthew a little. I could tell that it was hard on him. They talked a little, and I think Matthew was listening, even though he didn't ask any questions. He did answer Pastor Arle's questions, though. I hope that as the time gets closer, he will ask more questions and that Pastor Arle can help him. I don't feel comfortable talking to Matthew about what will happen after he dies, because right now I am questioning God's plan for Matthew. I know that he has a plan and that he wants Matthew with him, but it is so hard to have faith in this. I am trying.

Matthew's labs today:

Hemoglobin 11.1 (normal 13.8 - 17.2)
Platelets 105 (normal 140-440)
WBC 14.7(normal 3.8 - 9.8)
ANC 4410 (this is only going up because his WBC are going up, which is because of the leukemia
Blasts (abnormal/leukemia cells) 22 (normal 0)

There really aren't any plans for Matthew today except trying to get his pain under control. Mary, Yvonne, and Anne, the nurse I forgot to name yesterday, who took care of Matthew when he was first diagnosed, are going to try to take him to see "Sum of All Fears" today, but Matthew already told me he doesn't feel up to going. He has been dozing most of the morning so maybe he will feel better this afternoon. Since they are all nurses, they will let Matthew take his Morphine PCA with him, but unhook him from fluids.

Barb, Matthew's Nurse Practitioner said that they were not going to keep bugging Matthew if he was ready to go home, but that if he wanted to, he could. They said that if he wanted to stay here, he could, and that they would give him passes to go home or out if he wanted.

This is all so hard to imagine for all of us. It is not fair that Matthew has had to go through all he has gone through for nothing. Our children are not supposed to die before us. It is just not fair...

Wednesday, June 05, 2002 at 11:30 AM (CDT)

I am really sorry I did not get Matthew's web page updated yesterday. I know a lot of you look for the updates. Matthew's lap top crashed yesterday and I could not fix it. Matthew didn't feel good enough to fix it, but he did today so I didn't have to leave him to go down to the Family Resource Center to use their computers.

Yesterday, the doctors did a lumbar puncture to see if there were any leukemia cells in the spinal fluid and to give him 3 drugs into the spinal fluid. The doctor said the fluid looked clear, which is good. Then he looked at it under the microscope and could not see any leukemia cells. They will probably continue to do this every week or so to hopefully give Matthew a little more comfort. They have also been trying to figure out a combination of pain meds to control his pain so he can go home. They also started Gleevec,a new chemo drug (oral) that has showed success with some leukemias, but I don't know if it has been tried on Matthew's. They also feel that this is a mutated form of the original leukemia that is very aggressive, so maybe the Gleevec will work on it. It probably will not get Matthew in remission, but will hopefully drop his white count some and kill some of the leukemia cells and make him more comfort. They are trying to do everything they can to make him comfortable. Please pray that this works on Matthew.

This morning Matthew woke up with a fever of 102.4. The tylenol is not helping with it, and the doctor feels that a lot of the pain and the fever are caused by his leukemia. His counts today:

Hemoglobin 12.3 (normal 13.8 - 17.2)
Platelets 89 (normal 140-440)
WBC 10.9 (normal 3.8 - 9.8)
ANC 2942
Blasts (abnormal/leukemia cells) 23 (normal 0)

This morning one of Matthew's favorite nurses who took care of him when he was first diagnosed, then she left, came by to see us. Matthew was asleep, so she will come back later. She is doing clinicals for her nurse practitioner license down in radiology today. Also, another of Matthew's favorite nurses, Mary, who is taking care of him today, and the Bone Marrow Transplant Coordinator, Yvonne, talked him into letting them take him to see "The Sum of all Fears". They were going to go tomorrow or Saturday, but since he is still in the hospital, they are going to unhook him from the IV and get him a pass to go (if he feels up to it). They are all so nice to us. I think that over the span of 2+ years of coming here, they have gotten to love Matthew. Even several of the doctors have said that Matthew is one of there favorite patients. I wish that the movie or producer, or whomever, would make a copy available for him to watch in his room.

I want to apologize for the typos in the last update. It was late, I was doing it in the dark, and I just didn't take the time to review it. I also want to thank you ALL for the wonderful, kind, inspirational posts to his guestbook. I know that I do, and probably Dirk, cry everytime I read them, but it feels good to get it out. Please continue to pray for Matthew that he finds comfort and relief from his pain. We love you all.

Monday, June 03, 2002 at 10:27 PM (CDT)

Day + 69
Sorry I did not get to update yesterday or earlier today, but I just did not have the words to say what is going on. Dirk and I are still in shock.

Yesterday, I finally had the nerve to ask Dr. Wilson the percent of leukemia Cells in the Bone Marrow done Friday morning. Dirk and I are really upset about the number - 50%. I asked Dr. Wilson how this could be that they took over so fast, and he said that the combination of Chemo and Total Body Radiation probably caused a mutation of the original Leukemic abnormality, and that this mutation was much more aggressive. He said that the tests done at day 34 did not look at enough cells to detect maybe 1 or 2 leukemia cells, and once we started weaning him off the prednisone, the cells went rampant.

Unfortunately, Matthew has few options available. Someone asked about Donor Leukocyte Infusions in which the infuse donor white blood cells in hopes of causing some Graft vs. Host Disease, but they feel this would be risky, and it probably wouldn't put Matthew in remission, and the Graft vs Host Disease can be very painful. Plus it would take time to arrange, and they don't think we have the time to do it. We did talk about starting Matthew on a new chemo drug called Gleevec, but again, it has not been proven to be effective against the chromosomal abnormality Matthew has. But, the mutated Leukemia cells may have a chromosomal abnormality that it would work on - to to cure, but to hopefully keep his White Blood Cells lower and make Matthew more comfortable, so they started him on that tonight. The doctors feel that Matthew could not have any iv chemo drugs or any that would cause profound myelosuppression (Dropping his WBC, Red Blood Cells and platelets) because the new donor cells are too fragile and it would destroy the marrow. I also e-mailed several Doctors that I had e-mailed before and one that others on an internet support group for parents of kids with ALL had e-mailed me, and they all agree that Matthew does not have a safe option available. One said that if we took Matthew through another transplant, he would only have <1% chance of surviving it.

So, as hard as this is to say, Matthew decided that he just wants to be kept comfortable, and as soon as we can get his pain under control and him to feel a little better, we will be going home with hospice care. I asked Dr. Wilson how long Matthew would have, and he honestly said that he doesn't really know, but that as fast as his leukemia is multiplying, he estimate is just weeks.

Tomorrow they will do another lumber puncture to see if there are leukemia cells in his spinal fluid, and give him some chemo into the spinal fluid to hopefully give him some relief from the headache and neck pain he is experiencing.

So, you see how hard it was for me to update his web page. The whole family, including grandparents/aunts, uncles,cousins are taking this very hard. Please continue to pray for Matthew that his weeks left are pain free and we can keep him comfortable.

Sunday, June 02, 2002 at 07:57 AM (CDT)

Day +68
Sorry that I did not update Matthew's webpage yesterday - I really did not feel like it. I will start this post about Matthew's Labs today:

Hemoglobin 12.8 (normal 13,8-17.2) Yesterday was 13.9
Platelets 95 (normal 140-440) Yesterday was 102
WBC 6.0 (normal 3.8-9.8) Yesterday was 5.0
ANC 2460 Yesterday was 317
Blasts (abnormal cells) 32 Yesterday was 4

I don't know much yet today since Dr. Wilson has not been in yet, so I will tell you about yesterday. Dr. Wilson spoke at length to me, and then talked to Matthew by himself. What he told me was that he felt that Matthew's leukemia was very aggressive to have multiplied so quickly in his marrow since he was clear at day +34. They stopped all of his cyclosporine Friday night in hopes of inducing some Graft vs Host Disease, where Matthew's body will start to recognise the donor cells causing the Graft vs host Disease. In return, the donor cells will sometimes attact any remaining leukemia cells. Matthew has had no signs of Graft vs Host primarily because he received such a good match from the donor. However, with the amount of leukemia cells in his bone marrow, it would take a LOT of Graft vs Leukemia effect. Also, the Graft vs Host can get really serious.

I talked to him about the possibility of doing another Transplant, and he said that they had not done a second one this soon after the first, but they would consider it if they could get Matthew back into remission, or close to it. This would be hard because he has had so much of the chemo drugs that they normally use for ALL, and could not tolerate any more of these. There are some new experimental chemo drugs they could try, but he needs to research them further. It will also depend on the chromosomal abnormality that Matthew has. We are waiting to see if it is the same one Matthew had when he was diagnosed and when he relapsed the first time. If it is a different one, they may have some luck with other chemo drugs, so we are waiting for the results. These normally take 2=4 weeks, but Dr. Wilson requested a very quick turn-around time.

I kind of thought that I was reading him to be saying that Matthew probably won't get back into remission, and also there is a substantial risk of relapse after a second Bone Marrow Transplant.

I will update later today after I talk with Dr. Wilson. Please say A LOT of prayers for Matthew, he still REALLY needs them right now.

Friday, May 31, 2002 at 08:15 PM (CDT)

Day +66
Well the news is not good. The blasts (abnormal cells) in Matthew's CBC today showed an increase from 4% yesterday to 13% today. Dr. Wilson did the Bone Marrow Biopsy at about 11:00 am. As usual, Matthew took a lot of medicine to sedate him, so he slept most of the afternoon. The infectious disease Doctors came in to see him to figure out what is going on in his sinuses, and to figure out what antibiotics to have him on for the correct coverage. The changed his IV antibiotics and are going to culture his nose tomorrow.

Dr. Wilson came in to give us the results of the Bone Marrow Biopsy, but since the Infectious Disease Doctor was there, he said he would come back when she was done. When she finished about 15 minutes later, Barb, the Nurse Practitioner, came in to tell us that Dr. Wilson had to get to a meeting and would be back to see us after 4 pm. I asked Barb if she knew anything or if she could tell me anything, and she said that Dr. wilson would talk to us. I knew then that the news wouldn't be good.

He came back at about 5 pm and said that there were more leukemia cells in his bone marrow than he had thought, and that Matthew's leukemia is a very aggressive one. He feels that this is why Matthew has had so much pain lately. His plan is to stop the cyclosporine (antirejection med) and try to induce some Graft vs Host Disease and this will cause some Graft vs Leukemia cells and hopefully kill the leukemia cells. They will know if the next few days if this is going to work. I didn't ask him what the options were if it didn't work, but I will talk to him more tomorrow. He is on call this weekend and siad that he would talk to us more tomorrow.

Please say a lot of prayers for Matthew. He needs them so much right now. I know that God has a plan for Matthew, but I have no idea what it is. Matthew has been very quiet about this, I guess he is just trying to absorb everything. He is so young to have had so much happen with him. Please say extra prayers for him.

Thursday, May 30, 2002 at 02:22 PM (CDT)

Day +65
Matthew is still in the hospital. Dirk and Matthew finally got up to the floor (9 west) at about 11 pm and were put in one of the unoccupied Bone Marrow Transplant rooms. They had just settled in, when the nurse in charge said that they were moving him to one of the rooms on the regular oncology floor. When Dirk and Matthew got to the room, there was another patient in the room. Well, Matthew is supposed to be isolated since he is still immunosuppressed from the BMT, so Dirk told the nurse this. She checked around and said that they would have to move another patient out of a room so that they could make room for Matthew, but that it would be a while for housekeeping to clean the room. Dirk insisted that Matthew be moved back in the Bone Marrow Transplant Room until the other room was available, so that is what they did. They finally got settled into the room at about 2am. So much for a good night's sleep.

They drew a CBC, Blood cultures and did a chest x-ray in the ER last night. Dr. Wilson came in to see us this morning and told us that they had found a blast (abnormal, immature cell) in the blood that they drew last night. Dr. Wilson looked at it himself and said that it looked suspicious and that since Matthew was feeling so poorly, he is concerned that it is a leukemia cell. He also went and relooked at the blood that was drawn in the clinic on Tuesday, and after looking very hard, he did see one cell that looked a little suspicious. This is not good news. His plans are to repeat the CBC tomorrow morning, and if he still sees ANYTHING abnormal, he will do a Bone Marrow Biopsy in the morning. Dr. Wilson said that if it is the leukemia coming back, and if they caught it early enough, sometimes they could decrease or stop the cyclosporine in hopes of causing some Graft vs. Host Disease, and as a result some Graft vs. Leukemia which can destroy some leukemia cells. We probably won't know anything more until in the morning.

Please say some extra prayers for Matthew, he needs them so much right now. Please pray that the abnormal cell is not leukemia.

Wednesday, May 29, 2002 at 10:22 PM (CDT)

Day +64
Matthew is back in the hospital. He has been complaining all day of feeling very achey and just terrible. He started running low grade fevers this afternoon, 99.8, and by dinner he was up to 100.7 and complaining about the right side of his face hurting and it looked a little puffy. He was blowing yellow "gunk" out his nose. I called the onc. dr. on call, Dr. Crawford, and he said to bring Matthew down to the Emergency Room for blood work/blood cultures, and to get him admitted and started on IV antibiotics. He has the CT scan of his sinuses already scheduled for tomorrow morning, which is good. Dirk took him down about 6pm.

Dirk called around 10 pm, and said that they are still in the ER. They drew blood cultures and did a chest x-ray. Don't know what it shows yet, though. They also started the IV antibiotic. Dirk will stay with him tonight, and I will go down first thing in the morning so Dirk can go to work. Please say a prayer that this is not anything serious. Matthew has been doing so well lately.

Tuesday, May 28, 2002 at 02:20 PM (CDT)

Day +63
Wow, it is hard to believe that it has been so long since Matthew had his Bone Marrow Transplant, but he is doing good. We went down to the clinic this morning for his weekly visit with Dr. Wilson/Yvonne and to have his blood drawn. Matthew's blood was drawn after he saw Dr. Wilson/Yvonne, so they let us go home before we knew the results of his blood counts. Yvonne called with them after lunch. They were:

Hemoglobin 13.0 (normal 13.8 - 17.8)
Platelets 66 (normal 140 - 440)
WBC 3.8 (normal 3.8 - 9.8)
ANC 2240

Matthew is having some achey pain, that Dr. Wilson is attributing to being off the steroids. Matthew has been on them for so long, and at such high doses, that this is kind of like a withdrawal. His lungs sounded clear, and he is not coughing much. He will go down to the hospital again Thursday for the CT scan of his sinuses to make sure that there is no sign of the fungus in his nose/sinuses. His hair is starting to grow back, and he looks so cute.

Hope that you all had a good Memorial Day weekend. Julie was home. She and I went shopping all day Sunday, then we went out to eat for dinner. Yesterday, we had Grandmother Fackler, and Grandma and Grandpa Hallemeier over for BBQ. Today, it was back to work for Dirk and Christopher. I still have a few weeks left of my leave, then I will head back to work. I have gotten kind of used to being home, but miss being out among other adults. Please continue to keep Matthew in your prayers that he continues to make such good progress.

Saturday, May 25, 2002 at 09:10 PM (CDT)

Day +60
Matthew's cough/congestion is finally starting to clear up! I guess it was the change in antibiotics. He has had some chills, especially yesterday, but has done pretty well today. Julie came home today for the Memorial Day weekend. She will stay until late Monday. Hope that you all are having a good weekend. Matthew goes down to the clinic on Tuesday this week for counts.

Wednesday, May 22, 2002 at 09:53 PM (CDT)

Day +57 (continued)
Wow, another double post day. Just wanted to let everyone know that we are home from the hospital. The pulmonary doctor (lungs) came up and saw Matthew late this afternoon and said that his lungs sounded almost clear. Since Matthew wasn't having any more wheezing or fevers, and his lungs sounded clearer, he felt that the bronchoscopy was not necessary at this time. I will continue to monitor him, and if he gets worse, I will call and take him back down. At first they were going to make him wait until tomorrow morning, but then Dr. Wilson came in and said that he felt comfortable letting Matthew go home. HOME SWEET HOME! Thanks for all the prayers.

Wednesday, May 22, 2002 at 03:07 PM (CDT)

Day +57
We are still down at the hospital. Dirk did a great job of updating yesterday, didn't he? Matthew was feeling a little better yesterday, and a little better, still, today. His counts yesterday weren't any worse than Monday. His platelets were still low at 25, so they gave him a unit of platelets since he was in the hospital. His platelets today were up to 66!!! They were debating whether to have the pulmonary doctors see him and maybe do a bronchoscopy to see if there is anything going on in his lungs. This would allow them to take a look into them by passing a scope down his throat, and also allow them to take a sample of the fluid in his lungs to see if it is growing anything. The were concerned about a type of pneumonia, called PCP, that people who are immunosuppressed, can develop. Matthew has been on an antibiotic to help prevent this, but Dr. Wilson said that sometimes it occurs anyway. They have decided that since he is doing better today, they will wait and see how he does tonight. He has not had any fevers since Monday evening, and his lungs sound clearer today. He hasn't had the coughing today and he doesn't sound wheezy yet. However, this usually happens in the afternoon and evening, and it is still early. Maybe it was just a viral bug and is clearing up on it's own. They have also changed his antibiotics, so maybe that has helped. The good thing is that his blood cultures have remained negative, and his chest x-rays have been clear. Maybe we will be able to go home tomorrow, if he does well over night. They talked about having the pulmonary doctors at least have a look at him today so they at know about him.

Christopher started his summer job today working for Dr. Atkins in the adult Bone Marrow Transplant Unit. It is in the hospital next to Children's, where Matthew is. I think that he is going to come over to see Matthew after he gets off. Dirk will come after work and eat with us.

Please continue to keep Matthew in your prayers. Hopefully, this is just a minor setback, and he will be home soon.

Tuesday, May 21, 2002 at 12:12 PM (CDT)

Well, the rollercoaster ride continues.
After getting home from the Clinic yesterday afternoon, Matthew began to feel worse and had difficulty breathing. Debbie called the hospital and was told to bring him back down. He was admitted to the hospital and put on 2 more antibiotics and breathing oxygen. His temperature rose to 101.2.
They will do another chest X-ray and possible CT scan today. He will also receive a unit of platelets.
In the meantime, we will wait to see if the blood culture taken yesterday morning begins to tell us anything.

Monday, May 20, 2002 at 02:02 PM (CDT)

Day +55
Good News!! The results of the cytogenetics testing that they did on the Bone Marrow Biopsy on Day +34 showed NO LEUKEMIA CELLS!!!! This means that they looked at the genetic makeup of the cells that they took from the bone marrow, and that they were all normal cells. This is what we were praying for. His counts were:

Hemoglobin 13.8 (normal 13.8 - 17.2)
Platelets 25 (normal 140 - 440)
WBC 3.7 (normal 3.8 - 9.8)
ANC 2553

The bad thing is that Matthew continues to have the cough and upper respiratory symptoms. Last night he was running a low-grade fever, 100.2, with chills. No fevers today, but he didn't feel very well down at the clinic. They drew blood cultures from both of the lumens of his central line IV that is in his chest, and also we went down to radiology for a chest x-ray. The chest x-ray was clear. They went ahead and sent us home with STRICT instructions to bring him down if he starts running a temp over 101 or having difficulty breathing. We will wait to see if anything grows from the blood cultures they drew. If they grow something, Matthew will be admitted for IV antibiotics and monitoring. They went ahead and scheduled him for Pulmonary Function Tests next Monday to check his lungs. They normally do these at 3 months, but are going to do them earlier if Matthew doesn't improve. Dr. Wilson said that sometimes patients can develope Graft vs. Host Disease in the lungs, but it is not very common. Hopefully it is just a cold. The Viral Cultures they did last week from his nose came back negative, which is good.

Sunday, May 19, 2002 at 09:00 AM (CDT)

Day +54
Sorry that I haven't updated sooner. I had good intentions, but..... I drew Matthew's blood on Thursday to see how his platelets were before he saw the ENT doctor on Friday. His labs were:

Hemoglobin 11.4 (normal 13.8 - 17.8)
Platelets 20 (normal 140 - 440)
WBC 2.6 (normal 3.8 - 9.8)
ANC 2028

His WBC is dropping because he is tapering off the steroids. The prednisone causes his WBC to be higher, but not White Cells that are good at fighting infection, they are immature WBC's. Thursday evening, Julie and I went to the Mother-Daughter banquet at Grandmother Fackler's church with her. It was a nice program and we had a good time. It is a yearly event, and we enjoy going.

Matthew went to the ENT doctor on Friday. He took a good look up in Matthew's nose and didn't see any signs of the fungus, but he wants to watch it closely. He feels that Matthew has a bacterial infection that hopefully will be cleared up by the antibiotics they started him on. The ENT doctor wanted to be very careful because of Matthew's low platelet count, so he didn't want to look way up into his sinuses. Matthew will have a CT of the sinuses the end of May. Julie was home from Murray, Ky, so she went with us. Then we stopped at Chesterfield Mall for a while. It was good to get Matthew out of the house for something other than a doctors appointment.

Brad, Julie's fiancee came into town Friday night. Yesterday we went out for lunch then Julie and Brad did some wedding "stuff" - Bridal registry, Tux rental, etc. Then last night we BBQ'd then watched a movie. It is so nice to have all may family home. Brad will fly back to Atlanta this afteroon, and Julie will head back to Murray. She will be home next weekend for Memorial Day. Christopher starts work with Dr. Atkins down at Barnes Jewish Hospital in the adult Bone Marrow Transplant Center on Wednesday. He did this last summer and part-time the first semester of school. Tomorrow Matthew has his weekly appointment down at the Clinic. Hope that you all had a good weekend.

Wednesday, May 15, 2002 at 09:21 PM (CDT)

Day +50
Thank you to everyone who could make it to the Blood Drive dedicated to Matthew today. The turn out was wonderful. 78 people walked through the door and the coordinator from the Red Cross figures that we got about 67 units of blood - AWESOME!!! You guys are great. I know that there were some of you who came and, for some reason or another, could not donate. I really appreciate your effort.

Matthew was feeling a little better today. He and Christopher ordered pizza for dinner, since Dirk and I were at the blood drive. Tomorrow morning, Dirk will drop some blood by the hospital to check a CBC on Matthew. Hopefully, his platelets will be up a little. Thanks, again, for all the support we get from everyone through your good thoughts and prayers.

Tuesday, May 14, 2002 at 09:24 PM (CDT)

Day +49
Matthew has had a rather uneventful day today. He is having a lot of problems with cough, congestion, and wheezing. He has not been running any fevers, but I still worry about him. I called the ENT department today, and they are going to see him on Friday to look up his nose to see if there is any sign of the fungus in it. Since his platelets are low (22), I will draw a CBC on Thursday and if his platelets are still low, we may need to have him get a unit of platelets before he sees ENT. I think that if we need to go down to the hospital for platelets, I will see if they want to do a chest x-ray to make sure that Matthew's lungs are clear.

Don't forget about the BLOOD DRIVE in Matthew's honor tomorrow at Our Savior Lutheran Church in St. Charles, MO, from 2 pm until 8 pm. You can read more information about it above. Thanks.

Monday, May 13, 2002 at 03:47 PM (CDT)

Day +48
MATTHEW IS 100% ENGRAFTED!!!!!
Matthew had his weekly appointment down at the clinic today and we got the word that his Day +34 Bone Marrow Biopsy showed that he is 100% engrafted!!!! This is such good news. This means that his bone marrow is made up of all donor stem cells. They have taken over Matthew's bone marrow and are producing platelets, WBC, and RBC for Matthew. Dr. Wilson and Yvonne are so pleased with Matthew's progress. His counts were:

Hemoglobin 12.5 (normal 113.8 - 17.2)
Platelets 22 (normal 140 - 440)
WBC 3.3 (normal 3.8 - 9.8)

We didn't stay long enough for the WBC differential to come back which would tell what his ANC is, because Matthew wanted get out of there and get some food! (We stopped at White Castle on the way home for some "belly bombers") His platelets are getting low, and Dr. Wilson said that we could give him a unit of platelets today, or we could wait and see what he does this week and recheck him next week. So, I will watch for any additional signs of low platelets (bleeding, bruising, etc) and if I see any, I will draw a CBC to take to the lab to check his platelets. He has been 10 and below before without any symptoms, so Dr. Wilson felt comfortable letting Matthew go home without getting platelets today.

I talked to them about having ENT look at Matthew's nose, but they feel that since Matthew is feeling better and is on the itraconazole, they will probably wait 3 weeks until he is off the augmentin, then check him out. Yvonne was going to double check with the ENT doctors and let me know if they felt they should see him before that.

I talked to Yvonne about donating blood again, and she said that it would be okay at this point. She had told us that she didn't want us to give blood for Matthew or to donate it while Matthew was getting ready for and undergoing the BMT, so I had stopped donating. I have always given on a regular basis, and the Red Cross calls me all the time because I am 0+ blood type and CMV -, so they can use my blood for babies/kids, etc. Since they are having the blood drive at our church on Wednesday in Matthew's honor, I will go donate blood. Dirk will probably go also. I also talked to Yvonne about having our HLA typing added to the National Marrow Donor Registry, and she gave me the forms for all of us to fill out to have our name added to the list of potential bone marrow donors. I would love to be able to give someone a second chance at life if I could be a bone marrow donor for them. If not for some thoughtful, caring donor, Matthew probably would not be with us today. Please say a special prayer for Matthew's donor, whomever he may be. Your prayers and kind thoughts have made such a difference to us.

Sunday, May 12, 2002 at 09:11 PM (CDT)

Day +47
Happy Mother's Day!!! Hope everyone had a good one. We got back from Julie's Graduation in Murray, Ky. late last night. Matthew was pretty worn out. He is not used to doing as much as he did, and it took a lot out of him. We left St. Louis at about 2:00 - a little later than we had planned. We got down to Murray, Ky, at about 6:00, checked into the hotel and called Julie. We met her at a restaurant across the street from the hotel.

Saturday morning, I got up early and made a trip to Hardees to get Matthew and Christopher breakfast. They were serving a continental breakfast in the lobby, but it was not very good and I was worried about Matthew eating the food that had been sitting out. Matthew stayed at the hotel while we went to graduation. It was too crowded for him to go. After graduation, we went into Paducah for a late lunch (3:00) with Brad's family, also. On the way out of Paducah, we stopped for gas. I was driving the van, and Dirk was driving Julies new VW Jetta because she was having a few problems with it. We will take it to the dealer's this week so it will be ready for Julie to take back next weekend when she comes home. Anyway, Dirk pushed the button on the inside door handle to pop the lid on the gas tank, and the button fell down inside the door. We worked for about 1/2 hour before I finally got the gas cap off so we could get gas. We finally got home at about 9:15.

Today, I had my mom over for dinner for Mother's Day. It was good. I cooked dinner, and Dirk cleaned up - sounds like a deal to me :)

Matthew's cough and congestion is not much better, but no fevers. We have an appointment down at the clinic tomorrow so we will see what Dr. Wilson has to say about the problems Matthew is having. Hopefully we will also find out the results of the Bone Marrow Biopsy from two weeks ago. Again, hope you all had a good weekend. I will let you know tomorrow the results of the clinic visit.

Friday, May 10, 2002 at 10:54 AM (CDT)

Day +45
I don't have any news yet on the results of Matthew's Bone Marrow Biopsy (sigh), very frustrating, but I wanted to let everyone know this so you don't worry. Yvonne said she called the department that runs the test, and that they said that they weren't done, but that it wasn't that there was something wrong with Matthew, they just did not have it done. (Don't they know that we are very anxious to find out the % donor cells and if there are any leukemia cells present?)

I took Matthew down to Children's yesterday for the MRI. I thought it was to be of the hips/knees/ankles, but it was just the hips. The radiologist talked to me afterward, and said that his hips looked normal - no sign of AVN from the steroid use, but Matthew has never had a problem with pain in his hips, mainly knees and ankles. So, we will talk to the doctor on Monday to find out what the deal is.

I also took Matthew by the clinic before the MRI to have Yvonne look at him since he has been coughing up that thick green/yellow junk. He has also been complaining about his sinuses feeling "tingly" like they did when he first got the fungus in his nose. Yvonne did a viral culture of the nose and called ENT to see if they could see him either yesterday or today. They couldn't, so they recommended starting him on Augmentin (an antibiotic) for 4 weeks and then following up with ENT in four weeks and also have a CT of the sinuses at that time. This makes me very nervous, because if he does have a fungal spot up in his nose, by four weeks it will be into the sinuses, which is very bad. So, I will also talk to Dr. Wilson on Monday about trying to have someone from ENT look in his nose early next week. This will certainly give me peace of mind that nothing fungal is growing in there. Sometimes I feel like everything is a battle get things done for Matthew.

We will be leaving around 1pm for Murray, Kentucky for Julie's graduation. Christopher went yesterday to spend an extra day with Julie. Graduation is at 10:00 am tomorrow, then we will all to out to eat for a late lunch in Paducah, Ky, with Brad's family. Then we will head home. We will pick up Grandmother Fackler on the way down, and Grandma and Grandpa Hallemeier will meet us down in Murray tomorrow morning. They are going on to Pennsylvania to visit Grandma's cousins after graduation. Hope you all have a good weekend.

Wednesday, May 08, 2002 at 09:00 PM (CDT)

Day +43
Not much going on the last few days. Matthew still has the cough and is coughing up thick greenish yellow junk. I called Yvonne this morning, and she wants to see him tomorrow before we get the MRI of his legs. He is not running a fever, but just feels kind of congested and he is coughing. It worries me because he doesn't have anything to fight infection, if he gets one. Hopefully, it us just a virus, but even that is going to be hard for him to fight. Still haven't heard any word on the % donor cells from Matthew's Bone Marrow Biopsy last Monday. I will try to find out tomorrow when we are down in the clinic.

Today is Christopher's birthday (the big 20) so we went out to eat at a restaurant in Alton, Illinois. HAPPY BIRTHDAY, CHRISTOPHER !!!!!!! They gave us an isolated table in the corner of one of the private rooms. It was good. He will drive down to Murray, Ky tomorrow to spend an extra day with Julie. The rest of us will go down on Friday for graduation.

Monday, May 06, 2002 at 09:07 PM (CDT)

Day +41
Matthew had his weekly appointment down at the clinic today. I was hoping to have the results of the test showing the % of donor cells and the results of the cytogenetics, which shows if any cells have the same abnormality as the leukemia cells, but they were not available. Yvonne, the transplant coordinator, said that they usually take about 7 days, so hopefully they will be available in the next day or so. Matthew has an appointment down in Radiology for an MRI to check for AVN (Avascular Necrosis) on Thursday, so if I haven't heard from Yvonne by then, I will hunt her down. AVN can result from high doses of steroids that Matthew has taken for the leukemia and is a loss of blood supply to the bones, mainly joints. It is common in hips, knees, etc. It is more common in boys than girls, and more common in teens. AVN can cause the need for a joint replacement, but we will cross that bridge when/if we get to it. Luckily, Matthew has had less pain in his legs since he got the medicine last week to help keep the calcium in his bones.

Matthew labs today were:

Hemoglobin 13.6 (normal 13.8 - 17.2)
Platelets 38 (normal 130 - 440)
WBC 5.3 (normal 3.8 - 9.8)
ANC 4496

As you can see, Matthew's platelets are continuing to drop. Yvonne said that this is normal at this point after a Bone Marrow Transplant. Matthew has had a little trouble with nose bleeds, but not enough to require a platelets transfusion. They normally don't give him platelets until they get 10 or lower. Matthew's liver enzymes are also higher than last week, but Dr. Wilson said that about 1/2 of the translant patients have elevated liver enzymes primarily as a result of the cyclosporine and other meds that are toxic to the liver, and also because Matthew may have a little bit of Graft vs. Host Disease of the liver. Dr. Wilson is very pleased with Matthew's progress. Please continue to pray that he does well. His cyclosporine level was still a little high, so we are on an even lower dose of cyclosporine.

Friday we will leave for Murray, Kentucky, for Julie's graduation. We will take Grandmother Fackler with us, and Grandpa and Grandma Hallemeier will meet us down there.

Sunday, May 05, 2002 at 06:59 PM (CDT)

Day +40
Hope everyone enjoyed this wonderful weekend. Saturday I went out to lunch with my mom for my birthday, Matthew did okay by himself for a few hours. He spend most of the time on the computer, of course. Last night, he was up again with pain in his legs, arms and coughing. He and I were up watching "A Knight's Tale" at 3:30 am. Watching TV helps get his mind off the pain. So far today he feels okay, but he usually feels okay during the daytime.

Christopher came home from college this afternoon. We BBQ'd chicken. Tomorrow, Matthew has an appointment down at the clinic for bloodwork and also we should find out the results of the Bone Marrow Biopsy that they did last Monday. Please pray that everything is clear and that he has mostly donor cells.

Friday, May 03, 2002 at 07:56 PM (CDT)

Day +38
Not much has been going on the last few days. Matthew has been having a lot of pain at night in his legs, and also has been coughing. Last night he didn't feel very well and felt like he was going to start running a fever, but he only got up to 99.5. Last night we BBQ'd hamburgers and had french fries. Matthew ate two hamburgers and fries. Then at about 8 pm he had nachos, then at 9 he had a bowl of ice cream. All of this is because of the steroids.

This afternoon I drove down to Wash U. and picked up a bunch of Christopher's stuff to bring home for the summer. He will be home on Sunday. Julie is staying in Murray,Ky this weekend. Next weekend is graduation so we will all go to Murry State University if Matthew is feeling well enough. Brad (Julie's fiancee)'s parents will be there for graduation, too, so it will be good to see them again.

Don't forget about the blood drive at Our Saviou Lutheran Church in St. Charles, MO on Wednesday, May 15, from 2pm until 8pm in honor of Matthew.

Wednesday, May 01, 2002 at 09:41 PM (CDT)

Day +36
Matthew has done fairly well the last two days. I took his blood in yesterday morning to check his Cyclosporine level, and it was fine, so we will continue on the low dose that he is currently taking. His blood pressure has still been high, so we started the new blood pressure medicine. It has dropped it a little, but it is still high. We will continue to check it tomorrow, and if it remains high, I will call and see if they want me to increase the dosage. He has not had any problems with it as far as pressure dropping too quickly and heart rate beating fast like the other medicine. Plus, this on he just has to take once a day.

We picked up Christopher from Wash U and went down to eat on The Hill tonight for my birthday. Matthew went, too, and we got a table in the corner that was pretty isolated. Christopher will come home Sunday for the summer. Julie still has finals next week, then we will head to Murray next Friday for graduation.

Please note the top of this page. There is a blood drive dedicated to Matthew at our church, Our Savior Lutheran Church, in St. Charles, MO, on Wednesday, May 15, from 2pm until 8pm. You can call the church office at (636) 947-8010 for directions or to set up an appointment. Walk ins are also welcome.

Monday, April 29, 2002 at 07:10 PM (CDT)

Day +34
Matthew had his 30-day post Bone Marrow Biopsy down at the clinic today. Actually, it is day +34, but Matthew wanted to wait until today to have the Bone Marrow Biopsy so that Dr. Wilson could do it. The Biopsy went well - Dr. Wilson gives Matthew as much sedation meds as he needs to make Matthew comfortable. He got a whopping dose today. Usually, Matthew talks all the way through the Bone Marrow Biopsy, but today he was totally out - doesn't remember a thing. He slept until it was time to come home (4:30), and has slept since he got home. We did have to make a stop by Jack-in-the-Box for food on the way home. Matthew was starved since he couldn't have anything to eat this morning before the biopsy. Dr. Wilson looked at the bone marrow and said that he saw NO ABNORMAL CELLS. The pathologist still has to look at it, but Dr. Wilson is pretty experienced at looking himself. We will have the pathology results, cytogenetics (to see if there are any chromosomal abnormalities from the leukemia) and the report of the % of donor cells next Monday when we go back to the clinic.

Matthew's counts were:
Hemoglobin 15.3 (normal 13.8 - 17.3)
Platelets 62 (normal 140 - 440)
WBC 4.7 (normal 3.8 - 9.8)
ANC 4277

His platelets are down a little, but Dr. Wilson said that this is normal for where Matthew is post-transplant. Matthew's weight is down to 96 pounds (101 last Mon, 99 last Fri), but Dr. Wilson said that he is probably developing a little Graft vs Host Disease (GVHD) since he is tapering off the steroids, and that his body is using a lot of extra calories to fight the GVHD. His labs that show how is liver is doing are also a little high, also possibly due to a little GVHD of liver, they will watch them closely.

On a sad note, I learned today that Deanna, the 14 1/2-year-old who had her BMT the same day as Matthew from stem cells from her sister, passed away last Thursday from complications of her Bone Marrow Transplant. It has really hit me hard. Dirk and I got to know her parents fairly well when we all "lived" down at the hospital. It is just not fair that kids have to die from this horrible disease. Matthew did not get to know her, personally, because they were both isolated in their own rooms, but he is aware of her. I haven't told him yet, and I don't know how he will take the news. Please remember her family in your prayers.

Sunday, April 28, 2002 at 08:30 PM (CDT)

Day +33
The last two nights Matthew has been up most of the night with pain in his legs, primarily knees and below. Last night he said it felt like thousands of needles sticking in his bones and scratching. We tried everything we could think of to help with the pain, but we did not have much luck. He seems to feel pretty good during the day, but bad at night. Tomorrow he goes down to the clinic for his 30-day post BMT Bone Marrow Biopsy to see what % he has engrafted (% of his cells in his bone marrow that are the donors) and to look for any leukemia cells. Please pray that the bone marrow is clear of leukemia cells and close to 100% engrafted. I will talk to the doctor about the pain he is having in the legs. It could be from the steroids that he is taking. They can cause something called Avascular Necrosis, where the blood supply is cut off to the bones (usually joints) causing the bone to die. Matthew will also get an IV med called Aredia which will help keep the calcium in his bones. The steroids can also cause this, kind of like osteoporosis. He has had this in the past, and had some relief of the ankle pain from it. Hopefully it will help with the pain. It is a three hour infusion, so we will probably be down at the clinic all day, again.

I drew Matthew's cyclosporine level and magnesium level this morning and took it down to the hospital. The cyclosporine level is in the therapeutic range, so I restarted it tonight. His magnesium level was normal, partly due to the IV magnesium he got Friday and the magnesium pills he is taking at home three times a day. They will recheck his blood tomorrow. His blood pressure has been within the acceptable range, so I have not had to give him any doses of the new blood pressure medication, which is good.

Julie met Brad in Nashville this weekend to celebrate his birthday on Saturday (yesterday). HAPPY BIRTHDAY, BRAD!!!! The week after next is graduation for Julie, so we will go to Murray to see the ceremony. Grandmother Fackler and Grandma/Grandpa Hallemeier will go also. Chirstopher has finals Mon., Tue, and Wed., then he is done. We will meet him for dinner Wednesday and bring some of his stuff home. The rest we will get on Sunday.

Hope you all had a good weekend. Please pray that Matthew can find some relief from the pain in his legs and that his clinic appointment tomorrow is good news.

Friday, April 26, 2002 at 10:26 PM (CDT)

Day +31
What a long 24 hours we have had. Yesterday morning I went to the drugstore to buy a blood pressure cuff and to pick up his blood pressure medicine. Matthew's back was starting to hurt again in the evening, so we tried to keep ahead of the pain with the morphine. I started his cyclosporine (antirejection med) at about 8:45 pm and took his blood pressure like I was told. It was high at 178/103, and his pulse was 65, so I gave him the blood pressure med. Well, about 15 minutes later, Matthew was complaining about his heart beating really fast. So I checked his blood pressure and pulse and they were 104/64 with a pulse of 168!!! His heart was just beating so fast, then his face and neck started to get real warm and flushed. I called the oncology doctor on call, Dr. Crawford (who always seems to be the one on call when Matthew has problems), and he told me to give him some of his ativan that he takes at bedtime to help him sleep (this is an antianxiety med). Since Matthew's heart was beating so fast and he felt so bad, he was getting anxious which just made things worse. Dr. Crawford told me to recheck him in 20 - 30 minutes and to call him back to let him know how Matthew was doing.

I rechecked his blood pressure and pulse at 9:15 and it was 110/68 with a pulse of 138. Matthew was feeling better, so after talking to Dr. Crawford again, we decided that I would watch Matthew throughout the night and call if things changed. Then I was to take Matthew down to the outpatient clinic in the morning so that Dr. Crawford could check him out before the weekend.

This morning, I took Matthew down to the clinic for Dr. Crawford to check out. They drew some labwork, including a cyclosporine level. Dr. Crawford checked with the pharmacy and with the cardiologists, and they figured that the itraconazole that he takes for the fungal infection in his nose reacted with the blood pressure med. The blood pressure medication works pretty fast, and since it dropped Matthew's blood pressure so fast, his heart beat faster to compensate for it. The itraconazole seems to interact with so many medications. So, they decided to change Matthew's blood pressure med to something that doesn't act so fast and he will only take once a day. I will still check his blood pressure and hold it if his pressure is not high. Matthew's magnesium was still low, despite the supplements, so the cardiologist recommended getting Matthew's magnesium level up to normal before taking the blood pressure med because low magnesium can effect the heart. They gave Matthew some IV magnesium, which had to run over four hours with him hooked up to a heart monitor, so we didn't get home until 5:30 pm this afternoon. While he was getting the magnesium, they got the cyclosporine level back, and it was still too high, so we will hold the cyclosporine until Sunday morning, then I will draw a cyclosporine level and a magnesium level and take them down to the lab at Children's. The doctor on call over the weekend (Dr. Schaeffer, whom we know from last year) will check the results and call to tell us what dose of cyclosporine to give. Needless-to-say, we had a looooonnnnnng day.

Matthew talked me into going to get him Steak N Shake for lunch, so he had a burger and fries. Then he wanted a snickers bar, so I got that for him. As much as he has been eating with the steroids, I couldn't believe he had lost 2 pounds since Monday. His counts today were:

Hemoglobin 14.3 (normal 13.8 - 17.2)
Platelets 70 (normal 140 - 440)
WBC 3.4 (normal 3.8 - 9.8)
ANC 3026

We will go back to the clinic on Monday for the Bone Marrow Biopsy and more labs. Hopefully we will have a quiet night. Matthew seems to be feeling pretty good tonight, so maybe he will sleep all night.

Thursday, April 25, 2002 at 10:49 AM (CDT)

Day +30
Sorry I didn't get a chance to update yesterday. It started out as a good day for Matthew. We went out to eat lunch with Grandma and Grandpa, then went over to their house for a little while. In the afternoon, Matthew wanted to go to the grocery store with me, so we went at about 4:30. Since the steroids make him hungry all the time, he wanted to go up and down every ailse finding all kinds of good things to buy to eat. About 8:30 pm, his back started hurting really bad. He was having bad back spasms and just couldn't get comfortable. He took several different pain medicines trying to find something to work. He even tried tylenol, but no relief. He had the heating pad under his back, but he still couldn't get comfortable. At about 1:30 am, he said that his head hurt really bad along with his back spasms. He said that they felt like they were throbbing. He took 2 morphine pills, and about 15 minutes later he was in tears because he hurt so bad. He said that it felt like his head was going to explode. We called the oncology doctor on call, Dr. Crawford, and he wanted us to bring Matthew down the the Emergency Room.

We got down to the Emergency Room at about 3:00 am and his blood pressure was very high - 144/107 (normal 110/70). This could be partly because of the pain he was in, and partly because of the cyclosporine and prednisone. They gave Matthew some IV Morphine and checked him out. After they got the pain under control, they rechecked his blood pressure and it was still 140/101. Since his pain was under control, they felt comfortable sending him home with instructions to bring him back down if he started to hurt badly again, and to check his blood pressure at least twice a day. We got home at about 6:30 am after making a stop at McDonalds for something for Matthew to eat! He must have been feeling better because he was starved.

I just called Yvonne, the transplant coordinator to let her know what was going on, and she called in a prescription for some blood pressure medicine for Matthew. So, I am on my way up to Walgreens to get a blood pressure cuff and the prescription for the medicine.

Matthew is resting comfortably right now, but he felt good yesterday during the day, also. I worry about how he will feel this evening. It seems like kids always feel the worst at night. He is dozing right now, partly from the pain meds and partly from no sleep last night. I will update you tonight and let you know how he is doing. Please say an extra prayer that he can find some comfort. Thank you.

Tuesday, April 23, 2002 at 09:11 PM (CDT)

Day +28
Matthew has been having A LOT of pain in his knees, ankles and feet. He was up a lot last night with his feet hurting really bad. He said that it felt like there was no circulation in them. He got up several times and almost fell down because they hurt so bad. I don't know if this is from the steroids (I think so), or because his magnesium and calcium are low because of the cyclosporine. So, at about 12:30 am I got Matthew a bowl of ice cream (good for calcium, of course, especially cookie dough) and an extra magnesium supplement. He also put a heating pad over his feet and took a morphine pill, which helped some. Finally he fell asleep at about 2:00 am. His ankles, knees and feet are bothering him still today, but not quite as bad. Hopefully he will be able to sleep tonight. Tomorrow we start to taper the steroids. He has been taking 50 mg/day since day +7. For the next week he will take 40 mg/day, then 30 mg/day for a week, etc. until he is off them.

I went out to lunch with the office today. It was nice to get out for a while and visit with adults. I felt a little "out of the loop" though, since I haven't been to work for about 6 weeks. Tomorrow I will go to the Bridal Shop to make sure that the wedding dress that came in for Julie is the one she ordered. The September 7 wedding is fast approaching.

Monday, April 22, 2002 at 04:25 PM (CDT)

Day +27
Things are going so good. We are happy. Matthew had his appointment down at Children's Clinic this morning. His counts were:

Hemoglobin 12.8 (normal 13.8 - 17.2)
Platelets 95 (normal 140 - 440)
WBC 2.8 (normal 3.8 - 9.8)
ANC 2604

This is the highest Matthew's hemoglobin has been since he was diagnosed. His platelets are up from 57 last week without any platelets transfusions. His WBC/ANC are a little exaggerated on the high side because of the steroids. Dr. Wilson is very pleased with Matthew's progress. His blood sugars (glucose) were a little high - 246 (normal 65 - 199), but this is also due to the steroids. The doctor is not going to do anything about this right now, because Matthew will start to taper off the steroids on Wednesday. He will decrease a small amount each week for the next 5 weeks until he is off them. This will make him happy and hopefully help with the joint/muscle pain he has had. His cyclosporine level (antirejection medication) was twice the therapeutic level, so we will skip it tonight and tomorrow morning. Tomorrow night we will restart it at half the dose. The doctor said that we can run it in over 1 hour, instead of 2, so that will make things a little easier. Next Monday, Matthew will have a Bone Marrow Biopsy to see what % of his marrow is made up of donor cells. Hopefully it will be at least 95% donor cells. If it is not at least 50%, they will probably decrease his cyclosporine to try to get him to engraft better. The fact that his platelets are increasing is a good sign that he is engrafting well. Thank you for all the prayers and good thoughts. I know that we couldn't do this without all the support from you. Please continue to pray for Matthew.

Dr. Wilson is still seeing just a small amount of Graft vs. Host Disease (GVHD) on his hands, he is rating it at a 1/2 out of 3, with 3 being the most severe. He is happy with just this small amount, but he did say that once Matthew starts to taper off the steroids, we may see a little more of GVHD. Hopefully, just a little more.

Tomorrow I am going to lunch with the Doctors and staff where I work. It will be good to visit with all of them. I miss them. Hope you all had a great weekend.

Sunday, April 21, 2002 at 10:02 PM (CDT)

Day +26
Matthew is doing pretty good today. He is still having a lot of pain in his ankles and knees, but we got some ACE bandages and wrapped them around his ankles. He said that the pressure helps with the pain. He takes them off at night. He went with me to the grocery store after lunch. After we got home, I picked up my mom and Dirk's mom and we went to look for fabric for me to make curtains for the windows in the breakfast room, kitchen, and laundry room. Dirk and his dad went to the driving range to hit some golf balls. Dirk is going to play in a tournament with his dad on May 5, so he figured he had better start hitting some balls. Grandma and Grandpa Hallemeier and Grandmother Fackler then came over and ate dinner with us. It was a nice day.

Matthew has an appointment down at Children's clinic tomorrow at 9 am. They will draw blood to check his counts and also his cyclosporine (antirejection med) level to make sure that he is taking the right dose. Tuesday, he will start tapering his steroids, which hopefully will help with the joint pain.

While I was buying fabric for the curtains, the sales person was saying that she was a nurse down at Children's Hospital. It turns out that she is/was Dr. Minkes, the surgeon who had done both abdominal surgeries and the testicular biopsy on Matthew, left Children's. He took a job at Children's Hospital in New Orleans!! This is very sad news. I really feel that he had a big part in Matthew surviving his first emergency abdominal surgery. He is also the one who came over to Children's from another hospital, where he was doing surgery, the second time Matthew came in for emergency abdominal surgery. He is a childhood cancer survivor, himself, and I think that is the reason that he has always had a soft spot for Matthew. He will be sadly missed. Maybe we will have to make a road trip to New Orleans when Matthew is able to have his ileostomy reversed :)

Hope that you all had a great weekend. Please continue to keep Matthew in your thoughts and prayers.

Saturday, April 20, 2002 at 09:26 PM (CDT)

Day +25
Sorry I did not post an update yesterday. There just wasn't anything new to tell you. But, no news is good news, right? Matthew has done pretty well the last day or two. The only thing that he has complained about is his joints, mainly ankles and knees, hurting. He thinks it is because of the steroids, but it makes it hard to walk without him being in a lot of pain. He is taking morphine for the pain, and it helps some, but not completely. Tuesday he will start to decrease the dose of the steroids each week. Hopefully that will give him some relief from the pain. The doctor said that this is when we may see some Graft vs Host Disease, so please pray that it is just a little. He has an appointment down at the clinic at Children's Hospital Monday morning. They will draw his blood again to check his counts.

Christopher was out this afternoon and evening. He came out for dinner and stayed until about 7:30. He is finished with classes and has a week off to study for finals, then finals the week after next. He will be home for the summer on May 6. Julie stayed down in Murray, Ky again this weekend. She was going to Paducah, Ky to order her bridesmaids dresses. Several of her friends who are going to be her bridesmaids are going with her.

Thursday, April 18, 2002 at 08:57 PM (CDT)

Day +23
Matthew is feeling okay today. I don't really have much news that is different. Hope that you are all doing well. Keep the prayers and good thoughts coming our way.

Wednesday, April 17, 2002 at 09:58 PM (CDT)

Day +22
Matthew had a pretty good day today. We went out to lunch with Grandma and Grandpa Hallemeier. We planned to go one of Matthew's favorite restaurant, Tornatores, but we got there and found that they had closed. We ended up going to Olive Garden. I was worried about the crowd, but it wasn't too busy and after I explained the situation with Matthew and the BMT, they seated us in one of the rooms that they weren't using. It was good to get Matthew out.

Matthew has felt pretty good today, but feels very tired and worn-out. He was dozing in the car going to/from Olive Garden, which is not like him. He also took a nap on the couch this morning. He said that he doesn't feel that he is getting sick, just tired. The steroids are making him very hungry - I think that I have made a trip to the grocery story almost daily for food. It is good to see him eat, though. Today he wanted ice cream (cookie dough) and chips/salsa. Hopefully he will put on a few pounds before he is off the steroids.

Hope that you are all enjoying the record-breaking hot weather. I love it!! We are having a deck put on the back of the house, so I hope that we have some cooler weather this weekend to enjoy it. I feel bad that Matthew can't go out to sit on it this summer because of all the construction in our subdivision, but it is not worth him getting a potentially serious infection from something that is stirred up in the air.

Tuesday, April 16, 2002 at 09:10 PM (CDT)

Day +21
Not much happening around the Hallemeier house today - boring is good. It is hard to believe that three weeks ago today Matthew got his new bone marrow - kind of like a re-birthday. Not much has changed regarding Matthew. Please continue to keep him in your prayers.

Monday, April 15, 2002 at 08:45 PM (CDT)

Day +20
Matthew is doing soooooo good. I took him down to the clinic this morning to see Yvonne and Dr. Wilson. Matthew's central line IV has two lumens, or tubes. One is white-colored, and one is red-colored. We always infuse his cyclosporine through the white lumen, so that they can always draw the cyclosporine level from the red one. This is because the cyclosporine can "stick" to the walls of the lumen causing an incorrect level. They base Matthew's dose of cyclosporine on the level in his blood. This is so they can give him enough to prevent rejection of the donor bone marrow, but not so much that it is toxic. Anyway, they could not get blood out of the red lumen. They drew all the other labs from the white lumen, and then they put something called TPA into the red lumen. TPA is a super blood clot dissolver. It has to sit in there for anywhere from 30 - 60 minutes to work. They went ahead and drew the cyclosporine level from his arm, which meant a needle stick, so we could get the cyclosporine started. After about 45 minutes, they were able to get blood out of the red lumen. His labs were:

Hemoglobin 12.5 (normal 13.8 - 17.2)
Platelets 57 (normal 140 - 440)
WBC 2.0 (normal 3.8 - 9.8)
ANC 1620

Matthew has only required 2 units of platelets since the BMT and no red blood cells. This is unusual and is a good sign that he has engrafted quickly and the donor marrow is making platelets for Matthew. The doctor did see a little red rash on his palms, which they feel is a little bit of Graft vs Host Disease (GVHD), but they were hoping for just a little of this. This is because along with the GVHD comes Graft vs Leukemia Effect, where the donor cells destroy any leukemia cells that were clever enough the escape the chemo and Total Body Irridiation. Hopefully it will not get any worse. GVHD can also effect the whole GI tract or the liver, which can be serious and life-threatening. His magnesium was also a little low because the cyclosporine can cause a loss of magnesium. He is now on a magnesium supplement, which is very common. We will go back down to the clinic next Monday, unless anything arises, and then in two weeks, they will do a Bone Marrow Biopsy to see how well he has engrafted (what % of the cells in his bone marrow are the donor's cells) and to look for any leukemia cells. Hopefully he will be close to 100% engrafted with NO LEUKEMIA CELLS.

Matthew is still having pain in his legs and back from the steroids. He has one more week of the high dose that he is on, then we will taper a little each week for the next 5 weeks to get him off them. If he shows any increased sign of GVHD at this time, they will probably increase the steroids again. UGH! Other than that, he is feeling pretty good. Today he said that he felt better than he did when he was getting chemo, which has been the last 2 years! Please continue to pray for Matthew's exceptional recovery and that he is cured of this terrible disease once and for all.

Sunday, April 14, 2002 at 09:46 PM (CDT)

Day +19
We had a very quiet, but good day today. Dirk and I worked around the house. Matthew was on the computer most of the afternoon. Dirk went to Schnucks and got some chicken, so we had BBQ teryaki chicken, fresh broccoli, and potatoes for dinner. Matthew was hungry again tonight, so he had a bowl of cereal and some Doritos - got to love those steroids! Tomorrow we have an appointment down at Children's Outpatient clinic. We will not give his cyclosporine until after they draw blood to check a level. They will also check a CBC, Basic Panel to check his kidneys, liver enzymes to check his liver, and no doubt many other tests. Our appointment is at 9:30, but Matthew has been waking up early lately, usually around 6:30 am, so we may try to get in a little earlier. Hopefully, this will let us get home earlier.

Matthew continues to do well with no signs of Graft vs Host Disease (GVHD), but it is still early. Please continue to pray for minimal to no GVHD and for Matthew to continue to do well.

Saturday, April 13, 2002 at 10:08 PM (CDT)

Day +18
Today has been kind of a low key day-not much happening. However, quiet is good. About the only thing that we did was to go out to dinner at one of Matthew's favorite restaurants, Fratellis. Dirk went to Wash U and picked up Christopher to eat with us, and Grandma and Grandpa Hallemeier met us there. Since Matthew cannot be around crowds due to being so immunosuppressed, we went early (5:00pm) and got a table isolated from most people. We had a nice dinner, and I think that Matthew is feeling better. He said that it felt good to get out of the house for something other than going down to the hospital. After dinner, Christopher came back to the house to get his car to take back down to Wash U. He has one more week of classes, a week to study, and then finals. Please continue to keep Matthew in your prayers that he continues to do well.

Friday, April 12, 2002 at 08:23 PM (CDT)

Day +17
Matthew's labs today were great, considering he just went through a Bone Marrow Transplant. They were:

Hemoglobin 12.1 (normal 13.8 - 17.2)
Platelets 55 (normal 140 - 440)
WBC 8.3 (normal 3.8 - 9.8)
ANC 7470

Of course, his high ANC and normal WBC are due to the Neupogen I have been giving him to increase the WBC's and also the steroids cause the WBC to he higher. He got his last dose of Neupogen last night, so I would expect his WBC to be back down around 2.0 - 3.0 by Monday. His platelets came up from 38 on Wednesday to 55 today without any platelet transfusions. This is good - it probably means that the donor marrow has engrafted enough for Matthew to produce his own platelets. We will repeat these, along with a bunch more lab tests on Monday down at the Hematology clinic. His blood sugars are running a little high - 157 (normal 70 - 110), but this is also due to the steroids. Occasionally, while on the steroids, kids will need insulin shots to keep the blood sugars under control. Hopefully Matthew's will not get much higher.

He is complaining tonight of being hungry and bored - good news. He wants to go to Schnucks, but for at least the first 30 days, he needs to avoid places where there are many people. I offered to take him for a drive to get out, but that wasn't what he wanted. He is downstairs now making an ice cream float. The steroids make him hungry all the time, which is good to see. Maybe tomorrow we can make a trip somewhere that is not crowded - if he still wants to get out :)

Christopher is planning on coming home tomorrow and staying the night. He wants to drive his car back down to school on Sunday. He has not driven it since he dislocated his shoulder and had the surgery. Julie is staying in Murray, Ky, this weekend. Only a few more weeks until graduation for her.

Our congregation at Our Savior Lutheran Church in St. Charles, Mo, is going to sponsor a blood drive through the Red Cross in Matthew's name. It will be Wednesday, May 15, from 2 - 8 pm. Anyone who would like to donate blood is invited - you don't have to be a member of the congregation to donate. Please e-mail me if you would like directions. Even if Matthew does not need the blood, or it is not his blood type, there are so many people who do. Matthew has required 33 units of blood and 36 units of platelets since he was diagnosed 2 years ago. This is made possible by the generousity of people like you. Thanks, Debbie

Thursday, April 11, 2002 at 01:21 PM (CDT)

Day +16
Well, we finally made it home at about 7pm last night. We had to wait until his cyclosporin was complete and then had to stop by the DePaul Office to pick up Matthew's supplies and medicine for the home IV Cyclosporin (antirejection med). His counts were pretty good yesterday, so I will send blood to the lab (via Dirk) tomorrow morning to see how his platelets are for the weekend. We have an appointment down at Children's Oncology clinic on Monday for more bloodwork and to see Yvonne and Dr. Wilson.

We had so much "junk" to bring in last night, in addition to going to Walgreens to pick up Matthew's new medications - Prednisone (steroid) and Acyclovir (antiviral). They are both oral. Matthew was feeling pretty bad by the time we got home - his back hurt. He finally got settled into bed about 10 pm after his IV Benadryl and IV Neupogen (to increase WBC's). He will have one more dose of Neupogen tonight. He woke up several times during the night, and then at 6am we did his Cyclosporin. He has been so hungry today, but the Total Body Radiation and hgh doses of cytoxan (chemo) temporarily damaged his saliva glands and his taste buds, so things don't taste much at all and he has trouble swallowing dry things (like the bacon sandwich he wanted for lunch!).

Hope that everyone is enjoying this beautiful, sunny weather. We will have to keep the house closed up and Matthew inside for most of the summer because of all the construction they are doing in the subdivision. Maybe I can get Matthew out to the park for some exercise and fresh air after his counts recover a little.

Wednesday, April 10, 2002 at 10:54 AM (CDT)

Day +15
WE ARE GOING HOME!!!! Wow, it is hard to believe - we are going home today after his 4pm dose of cyclosporine. Matthew is so excited (not to mention Mom is too). His counts today:

Hemoglobin 11.1 (normal 13.8 - 17.2)
Platelets 38 (normal 140 - 440)
WBC 2.8 (normal 3.8 - 9.8)
ANC 1780

He got a good "bump" up from the platelets yesterday. I will draw a CBC in the morning to see how his counts are, and then he will go back to the outpatient clinic on Monday to follow up with Dr. Wilson and Yvonne. We will need to continue to keep Matthew isolated from crowds and especially any sick people. He will not have a normal immune system for 6 - 12 months, but the first 100 days post-transplant are the most critical as he will be the most susceptible to infection. We will have to watch his food preparation at home and will need to be careful when/if he eats out. Dirk is at home getting everything ready for our homecoming. We are having an air filtration system installed on the furnace/air conditioner at home because of all the new construction in the subdivision. It is probably "overkill", but we don't want to take the chance of Matthew being exposed to anything that they may stir up from the ground, etc.

Yesterday afternoon I picked up Christopher and took him to the orthopedic surgeon to follow up on his shoulder surgery. The surgeon was very pleased with the range of motion of his arm/shoulder. She is increasing his physical therapy and is going to start him working with weights. He will return in 6 weeks. He is planning to come home this weekend and will take his car back down to school. He will be glad to have "wheels" again.

As I look around the room, there is so much to pack up - basically we have "lived" down here for the last 3 weeks - Hotel Children's :) The staff has been wonderful to us while we have been here. Not only taking care of Matthew's needs, but mom's also. They truly are wonderful, caring people - from the Patient Care Assistants, to the Nurses, to the Support Staff (dietary, pastoral care, physical therapists, psychologists, child life specialists, social workers, housekeeping, etc.), to the Nurse Practitioners, to the Fellows, to the Doctors. So many people that have made such a huge impact on Matthew's care and progress. Thank you from the bottom of my heart. Thanks to all of you who have continued to keep us in your thoughts and prayers. Thanks to all of my friends/family who visited and brought food/gifts for Matthew. Thank you to all of my Cyber-friends for all of the on-line support. You know first-hand what we are going through and have been there 24/7 whenever I needed help or to just vent. I also want to personally thank my family - Dirk, Julie, Christopher, Grandparents - you have been so patient with my irritability and crankiness. I love you all. We are truly blessed and could not have done this without every last one of you. You will always hold a special place in our hearts. I know there are many more people that I am forgetting to mention who have been there for us, thank you. I don't mean for this to sound like a good-bye, I will continue to update you on Matthew's progress, I just wanted to let you know how much we appreciate you.

God has truly kept his healing hands on Matthew and given us strength to get through. He has been with us every step of the way. Please continue to keep Matthew in your thoughts and prayers.

Tuesday, April 09, 2002 at 10:45 AM (CDT)

Day +14
It is hard to believe that it has been two weeks since Matthew got the BMT. He is doing so well, it continues to amaze me. Such a miracle. Keep those prayers and good thoughts coming. Matthew's counts continue to improve (esp WBC) as the donor cells are engrafting. He is also still on the Neupogen (GCSF) to help increase his WBC. Counts today:

Hemoglobin 11.0 (normal 13.8 - 17.2)
Platelets 8 (normal 140 - 440)
WBC 1.5 (normal 3.8 - 9.8)
ANC ...........1170!!!!!!

He will get another unit of platelets today, but that is to be expected. He is still complaining about back pain, but we are going to try a muscle relaxer today to see if that helps. Other than that, he is doing well - no fevers. Once he goes home (hopefully tomorrow) he will have at least weekly visits to the outpatient clinic, and will probably have blood drawn several times a week to monitor his counts. He will probably continue to need platelets for a month or two. On day +30, they will do another Bone Marrow Aspiration and Biopsy to see the % of donor cells in his marrow and also check for any signs of leukemia. This will be done outpatient in the clinic by Dr. Wilson. Matthew personally requested that Dr. Wilson do the Bone Marrow. He knows that Dr. Wilson knows how much pain medicine he needs to sedate him and keep him comfortable. Dr. Wilson has been following Matthew since diagnosis and knows Matthew well.

HE was hungry this morning, but didn't want breakfast food, so he had some macaroni and cheese. Oh, well, whatever sounds good to him is okay with me. I will try to post later about the day, but I wanted to share Matthew's good counts with you. Keep those prayers coming :)

Monday, April 08, 2002 at 04:43 PM (CDT)

Day +13
Good News - Matthew will probably get to go home either Wednesday eve or Thursday!!!! This is such good news, he is so anxious to get out of here. He is doing so GOOD, thank you for keeping him in your prayers. Matthew's counts were:

Hamoglobin 10.3 (normal 13.8 - 17.2)
Platelets 21 (normal 140 - 440)
WBC 0.6 (normal 3.8 - 9.8)
ANC 222 or 444

-the reason for the uncertainty about the ANC is that there were 50 cells counted and the %'s they reported only added up to 50 rather than 100, in which case his ANC was 222. However, if they should have been doubled to add up to 100(%), it would be 444. Either way, the doctors are very happy. I was concerned because he is showing no signs of Graft vs Host Disease, not that I want him to experience this, but along with it comes the Graft vs Leukemia effect, in which the donor's WBC's would attack and kill any leukemia cells that were clever enough to escape the high doses of chemo and Total Body Radiation. Yvonne reassured me that it is still early and that sometimes they don't see GVHD until they start to taper off the steroids, and also that sometimes the signs of GVHD are very mild, but that you still get the Graft vs Leukemia effect. So, we will just be content that he is doing so well.

I have been busy today arranging for the home IV cyclosporin for Matthew. The doctors that I work for have graciously agreed to let us do this through the office, and Mitch, our pharmacist, has been working to make arrangements to have it ready when Matthew is discharged. I am so fortunate to have such a great support system.

Matthew has been having quite a bit of pain in his back. He feels it is probably due to the steroids, but sometime in the next few weeks they will take an x-ray of his hips to make sure that he doesn't have something called Avascular Necrosis (AVN) from the prolonged steroid use. This is where the blood supply is cut off to the joints causing problems. I am not real familiar with this, so I will have to do some research if that is what is causing the pain. He did not want to work with Physical Therapy today, but he sat up a good part of the afternoon.

Continue to pray that Matthew's counts continue to go up and that he can come home soon.

Sunday, April 07, 2002 at 10:28 PM (CDT)

Day +12 (part 2)
After the good news this morning, things have been kind of low key. Matthew sat up and was on the laptop most of the afternoon. It was good to at least have him up out of bed. The room is pretty small so there isn't much room to walk around for exercise, especially with a double IV pole with two double pumps and three syringe pumps. You should see us trying to get the pole in the bathroom and the door shut so Matthew can take a shower!

Grandma and Grandpa Hallemeier came down this afternoon. Matthew had asked Grandma to bake him some oatmeal raisin cookies, so after church, she baked a batch and brought them down to Matthew. Of course he shared them with the rest of us and they were great. Then Grandpa, Grandma, Dirk and I went to Culpeppers for dinner. We brought Matthew back an order of motzerella sticks with marinara sauce.

Dirk has been working hard at home cleaning and disinfecting in preparation for Matthew coming home. Today he cleaned Matthew and Christopher's bathroom from top to bottom. Even washed the shower curtain and liner! I don't know what I would do without his support and love. Thanks, Dirk. I love you.

Julie got back to Murray safely. She was in Atlanta visiting Brad this weekend. Keep up all good thoughts and prayers for Matthew. They are definitely working. Goodnight.

Sunday, April 07, 2002 at 09:21 AM (CDT)

Day + 12
WE HAVE AN ANC!!!! Yes, that is what I said - we have a white count! That means we have started to engraft. His WBC today is 0.3. They had 52 white blood cells to count and his ANC is 195!!! Of course, this ANC is not really accurate if they don't have 100 cells to count, but we are moving in the right direction. His platelets came up a little from the transfusion yesterday - up to 25. Hemoglobin is staying about the same at 10.5. The good thing is so far no fevers.

I will post later and let you know more about what is going on, but I wanted to share the news about the ANC.

Saturday, April 06, 2002 at 08:20 PM (CST)

Day +11
What a beautiful sunny day. I hope that everyone was able to get out and enjoy this sunshine. Matthew is doing pretty well today, but he is having a lot of back pain and just feels generally "yuck" from the steroids. Those of you with kids on steroids will understand :( Matthew's counts today.....

Hemoglobin 10.6
Platelets 10
WBC <0.1
ANC 0

I don't have the normals, but if you look at yesterday's entry, you can see them. Matthew still has no white cells, so no engraftment yet. But, this is not unusual. Everyone is different as far as how long it takes to engraft. As long as it occurs and we don't end up with an infection in the meantime, it is okay. It just delays him getting home. Matthew did get a unit of platelets today. His Hemoglobin in holding steady. This is because of the red cells that he got from the donor along with the marrow, along with the fact that red blood cells have a longer life than platelets or WBC, so they are hanging around longer.


I posted a picture of Dr. Wilson and Yvonne, the transplant coordinator, getting ready to hand the Bone Marrow - it is in the bag and looks like blood. The other picture was taken on Matthew's birthday.

It felt good to sleep in my own bed last night, and I felt comfortable leaving Matthew in Dirk's good hands. I got some laundry done and cleaned our shower, fun. My brother, Ervin, and his wife, Shannon, came down this afternoon with some goodies. Thank you very much - Matthew has been snacking on the cotton candy all evening. Christopher was going to come down to visit Matthew, but he has had a cold and a sore throat, so he didn't want to come get near the patients down here. Hope you feel better soon, Christopher. Tonight, Dirk, Matthew and I watched K-Pax.

Hope you all had a good day. Don't forget to turn your clocks forward tonight - one less hour of sleep.

Friday, April 05, 2002 at 05:46 PM (CST)

Day +10
Wow, it is hard to believe that two weeks ago I brought Matthew down to be admitted. On one hand, it seems like just yesterday, and yet it seems like we have been down here forever. Matthew's counts today were:

Hemoglobin 10.4 (normal 13.8 - 17.2)
Platelets 19 (normal 140 - 440)
WBC <0.1
ANC 0 - no white cells to count

I should mention that platelets are in thousands, eg. 19,000. The white count is what is expected, as his marrow has been destroyed by the cytoxan and TBI and we are waiting for the donor cells to start producing cells for Matthew. Luckily, he has not had any fevers and is feeling good. He spent most of the day on his laptop.

Matthew slept late again - almost 10am, and then he only got up because I woke him up :) Typical teenager! Physical Therapy worked with him with stretching, etc., and then he sat up for about 1 1/2 hours. Dr. Wilson is pleased with how well Matthew is doing. They stopped his TPN because he is eating some, and they are going to start switching some of his meds from IV to oral in preparation of him going home. He should end up just going home on all oral meds, except Cyclosporin twice a day IV.

Dirk came down this afternoon and will stay the night with Matthew. We are getting ready to go down to the cafeteria to get something to eat. Last night several of the girls from the office - Marva, Angela, and Pam - came down to eat dinner with me. Thanks, guys, I appreciate the company and hearing about the office. It is good to hear about the "outside world."

Julie is going down to Atlanta to spend the weekend with Brad and his parents. It is hard to believe that she only has a few weeks until she will graduate from college. She will work in Murray, KY through July, then come home until she gets married on September 7. She asked me this afternoon if I would make her veil, so I guess we will look for a pattern next time she is home. Christopher only has two weeks of classes and then a week off before finals. He will take a class at UMSL this summer and work for Dr. Atkins in the adult Bone Marrow Transplant Center at Barnes Hospital. Life is good....

Thanks again for all of the good thoughts and prayers. God Bless you all. Debbie

Thursday, April 04, 2002 at 03:19 PM (CST)

Day +9
I had a little trouble with Matthew's laptop this morning, but we got it straightened out. I decided to get on this morning before he was woke up and it froze up on me. I tried to "fix" it myself and got it even more messed up. It took us a while to get it going again, it wouldn't even turn off.

I know I sound like a broken record, but Matthew is having a great day. He has been hungry and ate about 1/2 of a Lean Cuisine. I know, what does he need with a Lean Cuisine, but what can I say, he likes them and whatever I can get him to eat is fine with me. His counts today are:

Hemoglobin 10.6 (normal 13.8 - 17.2)
Platelets 25 (normal 140 - 440)
WBC 0 with an ANC of 0 - they could find no white blood cells, which is what we expected. His bone marrow has been totally wiped out from the Chemo and Total Body Irridiation, and is just waiting for those donor cells to start to engraft. We are hoping and praying that he doesn't develop an infection, because he has nothing to fight one with.

We got some sad news today - Cindy, Matthew's child life specialist, is leaving on April 11. She has been cheering up and entertaining Matthew since he was diagnosed two years ago. She will be missed, but it is a good move for her - no evening or weedends. If we are lucky, Matthew will be home by then.

Dirk will come over after work for dinner and to spend some time with Matthew and I. Hope that you all are enjoying this sunshine today. I hear it is cool, but it looks nice from in here.

Wednesday, April 03, 2002 at 10:05 PM (CST)

Day +8
Hi, Everyone. Matthew had a good day today. His counts were:

Hemoglobin 11.1 (normal 13.8 - 17.2)
Platelets 13 (normal 140 - 440)
WBC <0.1 (normal 3.8 - 9.8)
ANC 0

Because his platelets were low, he did get one unit of platelets. They had a hard time getting the platelets, so if anyone is a regular platelet donor, this is a good time to donate. I think that they had to call in a regular donor to donate today. The girl in the room next to Matthew needed platelets today, also. Yvonne said that Matthew would probably start needing platelets daily or at least every other day until the new marrow starts to produce them.

Yesterday one of my cyber-friends, Leah, from PED ONC, came to visit me (along with her husband, Michael). They were in St. Louis celebrating Passover with friends and came by to meet me - she is one special lady. They lost a son to leukemia about a year ago. We had a very nice visit. Another of my friends whom I met down here at Childrens, Alison, brought me lunch and some birthday presents for Matthew. Thank you very much, Alison. Your choice for lunch was wonderful. Alison's daughter, Alexandria, also has ALL and is on the same rigorous protocol that Matthew was on before he relapsed. Please remember them in your prayers.

Matthew slept late again this morning. He was having a lot of pain in his back last night and did not sleep very well. I don't know what caused the pain, but it is better today. Since his back hurt, he did not want to do any excercises with Physical Therapy for fear he would hurt it more. Maybe tomorrow he will feel up to it. I know it is very important for him to get up and get out of bed each day.

This afternoon his grandma and grandpa Hallemeier came down to visit. Grandpa and I painted (or at least started painting) a picture on the window of Matthew's outer room (I think it is called an ante-room). We worked several hours, then decided to call it quits. There is another bone marrow patient in the room on the other side of Matthew, so we wanted to paint a picture on the window between the rooms so when people go in and out, they won't keep looking in at Matthew.

Matthew was hungry today, which is a good thing. He ate a donut (long john) and then he was hungry for toasted ravioli, so Grandpa and Dirk went to Pasta House and got him some. He ate three, even though his throat hurt when he ate them. Since he is eating some, they cut down on his TPN (nutrition through the IV).

Even though Matthew is doing so so well, I was talking to one of the onc. Dr.'s today and he said that the time when Matthew starts to engraft could be a rough time. That is when he could develop Graft vs Host Disease (GVHD) when the donor's marrow could attack Matthew's body because it is foreign. Hopefully he won't have a lot of GVHD, but there is no way to predict this. The fact that Matthew had such a compatible donor will help, but sometimes they even GVHD from a sibling donor. Please continue to pray for Matthew that he may sail through this transplant and be able to come home soon.

Good night, Debbie

Tuesday, April 02, 2002 at 12:16 PM (CST)

Day +7
Matthew is having another good day. He slept in again this morning, about 10:00, but it was cloudy and a good day for this. His counts are drifting down:

Hemoglobin 11.6 (normal 13.8 - 17.2)
Platelets 25 (normal 140 - 440)
WBC 0.1 (normal 3.8 - 9.8)
ANC 10 (with only 10 cells to count)

They will hold off giving him a platelet transfusion until his platelets get to 10, unless he has any signs of bleeding. He generally doesn't have any symptoms of low platelets, even when he gets below 10, but there is a chance of spontaneous bleeding when they get that low. They will start the neupogen today to try to minimize the number of days that his WBC is so low and to hopefully help speed up the engraftment process.

The Physical Therapist came up bright and early this morning to work with Matt. She brought an ankle weight up to work with. She also had him up walking around the room. Matthew tends to prefer to just lay around in bed, so I am glad that they strongly encourage him to at least do some stretching exercises. Cindy, the child life specialist, will be up this afternoon to spend some time with Matt. Hopefully it will be a quiet afternoon. Dirk will be down this evening, with clean laundry :)

Hope you are all having a good day - continue to keep Matthew in you thoughts and prayers. Thanks. Debbie

Monday, April 01, 2002 at 07:40 PM (CST)

Day +6
Hi, everyone. Sorry that it has taken so long to update Matt's page today. Time just got away from me. Needless to say, it has been a quiet day. Matthew's counts today were:

Hemoglobin 11.3 (normal 13.8 - 17.2)
Platelets 49 (normal 140 - 440)
WBC 0.1 (normal 3.8 - 9.8)
ANC 50, however, since they only had 10 white cells to count, this is really not an accurate number. He actually has nothing to fight infection.

He is holding on to his counts nicely. We are just waiting for the donor cells to start to "set up shop" in his marrow and start to make new WBC, RBC, and Platelets, and pray that he doesn't start to run a fever or come down with an infection. Tomorrow, they will start the Neupogen (GCSF) to help to raise his White Blood count. This should speed up the engraftment process when he does start to engraft.

Matt spent most of the day on his laptop. He slept a little later today - about 10:00 am. The doctors are real good about not waking him. They peeked in and came back after he was awake. I think he had a hard time getting to sleep last night. He is comfortable on the low dose of Morphine he is getting for the mouth sores. He tried to drink a little juice, but it hurt his throat. They are adjusting his IV fluid based on the amount of fluid he drinks so that he doesn't become dehydrated or overloaded with fluid.

The Physical Therapist came up to work with Matt for a while today. It helps to stretch his muscles and to give him a little exercise. She also had him walking a little in the room. Of course, there isn't a lot of room in here to walk around. Thanks for all of the nice wishes in Matt's guestbook and thanks for keeping him in your prayers.

Sunday, March 31, 2002 at 02:59 PM (CST)

Day +5
Happy Easter!! Hope that you are all having a good day. Matthew is feeling pretty good today, but not as good as yesterday. I guess it is because his counts are beginning to drop and his mouth is sore. His counts were:

Hemoglobin 11.0 (normal 13.8 – 17.2)
Platelets 52 (normal 140 – 440)
WBC 0.1 (normal 3.8 – 9.8)
ANC 10 (Yes, that is 10, not a typo) and they only found 10 white cells to count. This means that he has very little to fight infection, so it is critical that we do all that we can to protect him from germs. It would be very serious if he gets an infection right now.

Julie just got here and Dirk and Christopher are on their way down to visit. Dirk, Julie, and Christopher went to church and then went to brunch with Grandpa, Grandma, and Dirk’s brother, Dale, and his wife and kids. We are watching “Meet the Parents.”

This is kind of a difficult day. It was two years ago today that Matthew was first diagnosed with leukemia. When I think back over the last two years, it seems like so much longer. It feels like we have been battling this disease forever. I can remember very vividly the events of that day – from taking the lab results off of the printer at work, to bringing Matthew down to the clinic were they redrew labs and did a lumbar puncture/bone marrow biopsy, to being directly admitted to 9 West with the diagnosis of leukemia. He has been through so much since then, but now he has been given the chance of a cure as a result of some kind person who very graciously donated his bone marrow for Matthew. What a miracle.

They just admitted another Bone Marrow Transplant patient – now there are three of us back here. He is a little boy with ALL, also, so he will be following the same schedule as Matthew, but 5 days behind. The girl who received her BMT the same day as Matthew is progressing about the same as Matthew – WBC/ANC about the same.

Hope you all have a Happy Easter filled with love and peace. God Bless. Debbie

Saturday, March 30, 2002 at 10:41 PM (CST)

Day +4 (Part 2)
MAtthew had a very good day today. I picked Christopher up from Washington University this afternoon, and he and Matthew watched a DVD. About 5:15, Julie and Dirk came down. Dirk, Julie, Christopher, and I walked several blocks to an area called the Central West End. There are all kinds of restaurants, bars, shops, etc. We walked to a Pasta House for dinner. It was refreshing to get away for a couple of hours. We had a good dinner and the walk outside felt good. The weather was beautiful. I didn't hear the weather, but I would guess 60. Then we came back to the hospital and I helped Matthew get a shower while Julie started painting the window facing the hall in Matthew's room. Then I helped her finish the job. It is very colorful and makes it look kind of like stained glass. Julie, Christopher and Dirk left about 9:45, so Matthew and I are just hanging out watching "Saturday Night Live." I hope we have as good of a day tomorrrow. Good Night, Debbie.

Saturday, March 30, 2002 at 10:25 AM (CST)

Day +4
Good Morning. Matthew had a good night last night. He hasn't gotten up moving around this morning yet-just hanging around in bed watching cartoons! His counts today were:

Hemoglobin 11.2 (normal 13.8 - 17.2)
Platelets 66 (normal 140 - 440)
WBC 0.3 (normal 3.8 - 9.8)
ANC 240

Dr. Wilson was in this morning and said that Matthew is doing well. He has a few sores started in his mouth, making it painful and hard to eat, but the morphine is keeping him fairly comfortable. They are going to increase the sugar content in his TPN to give him more calories (and also make him sweeter :) - if that is possible). His counts are gradually dropping, but still hanging in there. Julie is on her way home as we speak and will be down this afternoon, probably along with Dirk.

I hope that you all have a good day. I will try to post later today. Please continue to pray for Matthew's healing. God Bless you All - Debbie

Friday, March 29, 2002 at 05:02 PM (CST)

Day +3
HAPPY BIRTHDAY TO MATTHEW!!! It is hard to believe that my "baby" is 16 - sweet 16. Not a very fun place to spend your birthday, but we have tried to make the most of it. Grandma and Grandpa Hallemeier and Grandmother Fackler came down this morning with a cake and cards. Matthew didn't feel like any cake, but we had some and we put it out in the lounge for the staff. Someone put "Happy Birthday" signs on his door, so everyone who comes in knows it is his birthday. Thank you all for the birthday wishes on his guestbook. You are all great and so caring and thoughtful. You put a little sunshine in his day.

He has felt pretty good today. He even tolerated us taking a few pictures of the birthday boy. I will try to get them developed in the next day or so and post at least one to the photo album. His counts are starting to drop, as expected -
Hemoglobin 11.7 (normal 13.8 - 17.2)
Platelets 73 (normal 140 - 440)
WBC 0.6 (normal 3.8 - 9.8)
ANC 510
They started his TPN today so we don't have to worry about him eating. They also started a morphine PCA for pain. It gives him a steady dose of morphine and allows him to give himself a little extra (bolus) if he needs more. This is nice because if he needs it, he doesn't have to wait for the nurses to bring it - he can push a button and give it to himself. It has a limit that he can have, so he cannot overdose on it. They also switched his itraconazole (Sporonox) to IV. He takes this to prevent the fungal infection in his nose from coming back while his ANC is low. They normally start all the BMT kids on an antifungal(fluconazole) to prevent fungal infections, but this does not work on the fungus in his nose. That makes 8 IV meds that he gets around-the-clock ---Cyclosporin (antirejection), Ampicillin (antibiotic), Itraconazole (antifungal), Zofran (antinausea), Acyclovir (antiviral), Heparin (blood thinner), Morphine (pain) and TPN (nutrition). The nurses back in the BMT unit are great - so caring and knowledgeable.

The child life specialist put a calendar up in Matthew's room of the last of March, all of April, and the first of May. We are using it as a pool to predict when Matthew will be able to go home. All of the nurses and doctors are signing the square of the day they think he will go home. Cindy, the child life specialist, is getting a gift(s) for the person(s) who pick the correct day. Optomistically, Dr. Wilson, Matthew's primary onc dr. has the earliest - April 8. That would be nice, but we are not holding our breath.

Dirk just got here with clean laundry and cards/gifts for Matthew. We are headed down to the cafeteria to get dinner. Julie and Christoher will be home tomorrow. I borrowed some glass paint from the child life specialist to paint on Matthew's windows. He doesn't want to do it, but maybe Julie will decorate the room a little. Thanks again for all the thoughts/prayers/birthday wishes. Now it is just a waiting game - trying to keep him infection-free while we wait for the donor cells to start "doing their thing."

Thursday, March 28, 2002 at 04:09 PM (CST)

Day +2
Matthew is having a good day (knock on wood). We both slept well last night, except for the few times the nurse woke him up. They decreased his IV fluids and put him on a fluid restriction because the donor cells can cause capillary leaking. This can cause the fluid to leak into the tissues causing swelling and they don't want him to become overloaded with fluid. As a result, he did not have to get up as many times last night to go to the bathroom. He has not been as nauseated today and has not had any vomiting. His counts continue to be fairly good - Hemoglobin 12.2 (normal 13.8 - 17.2), Platelets 103 (normal 140 - 440), White Blood Count 1.1 (normal 3.8 - 9.8) with an ANC of 1012. I was surprised that they were still so good, but Yvonne said that this is the reason that they like the preparative regimin that Matthew is on; the counts don't usually drop until 3 - 4 days after the transplant, so that they do not stay bottomed out for as long before he starts to engraft and the donor cells start making WBC, Platelets, and Red Cells for Matthew. Matthew's fever did not go any higher last night and he is not have a fever today.

Physical therapy came up and did some stretching exercises with him. Cindy, the child life specialist, came up and spent some time with Matthew - just visiting, so I took a walk. It felt good to get some exercise. They have decided to wait until tomorrow to start him on TPN, hoping that maybe he will start to eat, but I know that this will not happen because he HATES the hospital food. I think it is pretty good, but I like anything that I don't have to fix myself :) When you have been the hospital as much as Matthew, the food gets old real fast.

Dirk has to usher at church tonight, so he won't be down to the hospital. He has been a lifesaver, taking home Matthew and my dirty laundry and bringing it back clean and folded:) - one less thing to worry about. Julie and Christopher will both be home this weekend for Easter.

Wednesday, March 27, 2002 at 10:13 PM (CST)

Day +1 (Part 2)
Matthew had a better day today. After he got the IV benadryl and IV Ativan this morning, he slept until 2:30. He still had some nausea, but not nearly as much. He was in a little better mood - even gave me several of his wonderful smiles :) I sure love to see that. He is complaining about his throat feeling sore - he could be starting to get sores in his throat from the chemo and radiation. He is also running a low-grade fever - 100.4. He asked for some tylenol, but they are reluctant to give him it because it may mask a higher fever. So, they will wait to see if it gets higher, then they will draw blood cultures.

He has not eaten anything since Saturday. Dr. Wilson, his oncologist, is planning to start him on TPN (Total Parenteral Nutrition) which he has been on at home in the past. It is total nutrition (vitimins and fats) that go into the vein through his central line. This will still allow him to eat if he feels like it. The nice thing is that it will take the battle out of trying to find something he likes and getting him to eat. It is common for patients to be put on TPN following Bone Marrow Transplants to make sure that they get good nutrition.

Hopefully we will have a good night tonight. God Bless. Debbie

Wednesday, March 27, 2002 at 11:41 AM (CST)

Day +1
Just thought I would take a minute while Matthew is finally sleeping, to give you all a quick update. Last night was not a good night for Matthew. After the infusion of donor marrow, Matthew was pretty beat and fell asleep fairly early. Since he could still have a reaction to the Bone Marrow, they had him hooked up to an EKG monitor and also a probe taped to his finger to monitor his oxgyen level. He was sound asleep and the heart monitor kept alarming. The nurse came in to see if he was moving around, and when she saw that he had been laying perfectly still, she was a little concerned. She went out and was watching from the nurses station, and it kept alarming. Of course Matthew was so asleep, he did not know it, and seemed frustrated that we kept waking him up because he felt fine, just tired, and wanted to sleep. The nurse finally called the resident on call, who came up and looked at Matthew, listened to his heart, and took a copy of the rhythm strip down to the ICU doctor to look at. They determined that is was not anything, just something called "artifact" which is basically that the leads, or wires, attached to his chest were picking up things other than his heartbeat.

About that time(1:30 am) they were adding up the amount of fluid he had taken in (mainly IV, including the large amout of donor marrow) and the amount he had put out, mainly urine, and decided he needed another dose of the wonderful lasix. This is the diuretic that works rapidly to make him urinate more. He was sound asleep, so we didn't tell him that we were giving it to him. The first two times he woke up to go the the bathroom, he didn't think much about it. But the third time in about 15 minutes, he said "why do I keep having to go to the bathroom?", so we told him. For the next 1 - 1 1/2 hour, he was up a lot going to the bathroom. Of course, every time he would get up, the EKG would alarm and the nurse would come rushing in. Finally, I told them I would come out and tell them if it was alarming and he wasn't getting up. This worked well until the lasix finally slowed down. Then, he would occasionally alarm while doing nothing. This was making Matthew very frustrated because he was so tired, so I had them turn the monitor off in the room and put my trust in the nurses to watch it out at the desk. The did say that they took two more copies of the rhythm down to the ICU to have the doctor look at, and he still felt that it was nothing.

Matthew was also still very nauseated and vomiting. We had tried everything to help, but nothing was working. He has had luck in the past with IV Ativan and IV Benadryl, but there is a shortage of IV Benadryl, so they would only give it to him orally, which he said doesn't help. Finally, this morning, the pharmacist said that they would get some IV Benadryl to give Matthew with the IV Ativan, and he has been sleeping since, which is good.

His counts today are Hemoglobin 13.0 (normal 13.8 - 17.2), Platelets 103 (normal 140 - 440) and WBC 1.2 (normal 3.8 - 9.8)with an ANC of 1044. This WBC is a big drop from yesterday, which is expected after the chemo/radiation. They only found 30 white cells to count, so I imagine that by tomorrow, he will not have any white cells.

I don't have much more to report, things are quiet (thankfully). Thank you for all of the wonderful posts and prayers. I will
say that I cry every time I read all the wonderful things that you are writing (but these are good tears because I know that you all care so much). You are such a great support to us all. I don't know what we would do without you.

Tuesday, March 26, 2002 at 10:53 PM (CST)

Day 0
THE DONOR CELLS ARE IN!!!!!!!!They just finished up at 10:30. What a night. The Bone Marrow arrived at the airport here in St. Louis at about 4:15. They were delayed a little in rush hour traffic, but they arrived at the hospital at about 5:30. We finally get them to the floor and started at 8:00pm. There was a total of 837cc of fluid - almost one liter. Yvonne, the transplant coordinator had told us that the donor was a different blood type than Matthew and that when they got here, they would removed the red blood cells so that Matthew wouldn't have as much of a chance of a reaction. However, the donor was the same blood type as Matthew - 0+ - so they did not have to do this. That is why there was so much to go in. They hung the bag and just opened the clamp and let them run in by gravity. They had hoped to have them infused in about 1 1/2 hour, but Matthew was feeling a little discomfort in his chest and just felt "funny", so they slowed the infusion down a little. The donor cells finished infusing at 10:30. Now we wait.....

Our pastor, Pastor Arle, came down and sat with us, along with Yvonne and Dr. Wilson. The nurse who is taking care of Matthew tonight was also there. They have him hooked up to a heart monitor until 10:30 tomorrow morning. They will take vital signs frequently (at least hourly) throughout the night to make sure Matthew does not react to the donor cells.

Now, Matthew and I will try to get a little sleep. Thank you for all of the prayers and good thoughts. We couldn't do this without all of you.

Tuesday, March 26, 2002 at 11:45 AM (CST)

Day 0
Just a quick update this morning. Matthew is feeling a little better today. The discomfort from the radiation is better, not so much achiness, jaw pain, or burning skin. Still very sick to his stomach. They are going to see if they can get some different medicine for the nausea. He hasn't eaten anything for several days, now, and has not had much to drink.

His counts were even higher today, which the oncologist, Dr. Wilson, says is not unusual. A lot of immature cells being pumped out. The chemo and radiation have not started to destroy the marrow yet. His Hemoglobin was 12.2 (normal 13.8 - 17.2), Platelets were 106 (normal 140 - 440), and WBC 3.0 (normal 3.8 - 9.8) with an ANC of 2671. It will probably be another couple of days before his counts start to drop, and then then will REALLY drop.

The transplant coordinator, Yvonne, came in for a few minutes this morning. She said that the donor's cells should arrive at the hospital at around 5pm, so they should be ready to be given to Matthew at around 8 or 9 pm. I will try to update later this evening after they are infused and Matthew is stable.

A Physical Therapist came in to see Matthew a few minutes ago. They will come in daily and work with him to help keep up his strength and flexibility while in the BMT Unit since he can't leave his room. He wasn't really up for it, but bless his heart, he at least tried. They will be back tomorrow to work with him some more.

Thank you for all of the prayers and good wishes. We appreciate them.

Monday, March 25, 2002 at 09:51 PM (CST)

Day -1
This has been a very hard day for Matthew. Neither of us slept very well last night. Matthew was up a lot going to the bathroom, and the nurse was in every hour or so and she was not very quiet. I guess she felt that if she had to be up, we should be too :) Matthew was still vomiting most of the day. Then, to top it off, he had the Total Body Irridiation (TBI) in the afternoon. He said that the room was so cold and he had to lay perfectly still for about 10 minutes while they did the first side. Then they did the other side and he had to stay still for another 10 minutes. He felt so miserable when he was done. When he got back to the room, he started to feel terrible - achy, fevers, jaw pain, his skin burned. He is so miserable and is so scared. The nurses and I try to reassure him that these are normal side effects of the radiation, but he feel so bad that he can't see it getting better. He just wants to go home and keeps saying that he doesn't know if he can do this. Please say an extra prayer from him.

His counts were actually better today than yesterday - Hemoblobin 12.4 (normal 13.8 - 17.2), Platelets 118 (normal 140 - 440) and WBC 2.2 (normal 3.8 - 9.8) with an ANC of 1518. They should start to bottom out in the next few days. Then he will be very susceptible to infection. They started his cyclosporin yesterday. This is a drug that they give to transplant patients to help prevent rejection. He will be on it for the first 100 days after the BMT and will be tapered off it at that time if he has engrafted, meaning that the donor cells have taken over his bone marrow. They also started him on ampicillin, an antibiotic that is good for many different bacteria. This is just as a preventative measure because the chances of him getting an infection of some sort are very high. We will pray that he doesn't, but that would be the exception.

Tomorrow is THE DAY. He will get some good healthy bone marrow and then hopefully he will start the recovery to a healthy, cancer-free life. We don't know for sure when the BMT will occur. Usually the donor has the bone marrow harvest in the morning. It will then be flown/delivered here to Children's Hospital. It will take a few hours more for them the remove the red blood cells and to process the marrow to try to get rid of everything except the stem cells. Then, the stem cells will be given to Matthew through his central line IV. It is similar to getting a blood transfusion, but will be a smaller amount. Then we wait and pray that the stem cells accept Matthew's bone marrow as a new home and he doesn't get an infection before that happens. The donor stem cells will then start producing Red Cells, Platelets, and White Cells for Matthew. Since the donor has a different blood type than Matthew, when he has completely engrafted, he will have the donor's blood type.

Please say an extra prayer for Matthew tonight. He can really use it. Debbie

Sunday, March 24, 2002 at 11:21 PM (CST)

Day -2
Today has been a long day. Matthew got the second (and last) of his high doses of cytoxan. He felt pretty good yesterday, but about 6:30 am he woke up feeling terrible and has felt horrible all day. Most of the day he just lay in the bed in the dark room. He did not eat or drink anything. He has had horrible nausea and vomiting. The medicines that they give for it are not helping. On top of that, he was not urinating enough to flush the cytoxan through his kidneys and bladder. This afternoon they gave him an extra 1/2 liter of fluids iv to try to get him to urinate more, but no luck. By this evening, he had taken in from the iv about 1 1/2 liters more than he had put out from urine. They called the doctor and he had the nurse give him some medicine (lasix - a diuretic) to cause him to urinate more. And boy did he. He has gone all evening. Hopefully it will finally slow down and he can try to get some sleep. The nausea seems to be getting a little better. I hope that tomorrow will be a more comfortable day for him.

He was very down this evening, and rightfully so. He kept saying that "It isn't fair", and all I could say was "you're right, it isn't fair." And he kept apologizing, which just broke my heart. I kept reassuring him that it wasn't his fault, but he still felt bad. Tomorrow he will get the Total Body Irridiation (TBI)in the afternoon. This could cause him to be nauseated some more and could cause dry mouth, dry skin, and jaw pain. He will have to stay still for about 20 minutes in a lead-lined "vault" to get the radiation. Noone can be in the room with him, but there is a window that they can watch him through and they can talk to him over a speaker. Luckily he has had a little exposure to the department because it will be the same place that he got the testicular raidation.

His counts have not started to drop yet from the chemo. Probably not for about 5 - 7 days. His hemoglobin today was 11.2, Platelets were 97, WBC was 1.9 with an ANC of 988.

Julie and Christopher went out to eat with Dirk last night, then they came down to the hospital to see Matthew. Julie left for school this afternoon. They will both be home next weekend for Easter.

Please continue to keep Matthew in your prayers. Thank you.

Saturday, March 23, 2002 at 04:18 PM (CST)

Day -3
So far, today has been a fairly quiet day. Matthew had a little trouble falling asleep last night (it was about 12:30 before he settled down) and then they had him awake at 7:30 this morning, which is early for him. Hopefully, we will both sleep better tonight. Hopefully, we can get settled into a routine.

Matthew did pretty well with the high dose of cytoxan this morning. He did complain of a chemical-type burning in his nose and sinuses when it was going in, but otherwise has not had too much problem with it. Since the cytoxan can cause bladder irritation and bleeding, they are giving him a lot of IV fluids and checking the ph of his urine. If his urine is too acidic, they give him a bolus of a medicine called sodium bicarb (kind of like tums) through the IV. They just gave him a dose of this and we are encouraging him to drink more fluids.

The Game Boy Advance has kept him occupied most of last night and today. It is nice because it is little enough to hold in your hands and take with you if you have to go somewhere. The only problem is that the background music gets kind of monotonous after a while, but I can tolerate it if it keeps Matthew busy.

Matthew has been hungry, but since he doesn't like the hospital food, it is a challange to find something for him to eat. They do all that they can for the Bone Marrow Transplant kids to get them to eat. They will fix them anything that they can or get something from any of the other cafeterias at Children's or Barnes Jewish Hospital if that is what they feel like eating. For lunch, Matthew had half of a Pizza Hut personl pan pepperoni pizza from the cafeteria downstairs. On the menu for tonight is burritos with chili, and he said that they sound good to him, so we will see.....

Matthew's Uncle Dale and Aunt Becky (Dirk's brother and sister-in-law) stopped by this afternoon. They couldn't come in Matthew's room, but they waved to him from the glass window and visited with me in the parent's lounge for a while.

Julie and Dirk are going to pick up Christopher after the Mizzou Basketball game and they will eat somewhere near the hospital and then come visit Matthew tonight. Hopefully he will still feel good enough for visitors.

I finally added a link at the bottom of the page with information on the National Marrow Donor Program (www.marrow.org). This has information on becoming registered to be a Bone Marrow Donor and what is involved. All that is required to be tested and placed on the list of donors is a blood sample. I do think that there is a small fee for the testing/typing of your blood, but if people didn't volunteer to become a donor, we would not have one for Matthew.

Tomorrow is another dose of cytoxan. Hopefully Matthew will do as well with it as he has done today. Please continue to keep him in your prayers. Debble

Friday, March 22, 2002 at 05:46 PM (CST)

Day -4
Well,we finally get settled in down at the Bone Marrow Transplant Unit. We are in BMT room #3. It is nice - the farthest of the three main BMT rooms from the nurses station. There are two additional rooms that are on the other side of a set of double doors that they use if they need the additional two rooms. Dr. Wilson, Matthew's primary Onc Dr stopped by to see how he was doing. He said that by next week, the BMT unit will be full (5 max).

The rooms are really nice. There is an extra telephone hookup for the laptop and the telephone has a Watts line if we need/want to make long distance calls. As soon as we got here (we were half an hour late, of course), they drew lots of blood from Matthew and got him hooked up to IV fluids at a really fast rate to get him good and hydrated for the high dose of cytoxan tomorrow morning. They also got him hooked up to the heparin at a very slow rate to help protect his liver. This is because one of the donor's liver enzymes was a little elevated, and also because Matthew's are occasionally elevated. There is also a parents lounge and bathroom just for the BMT parents with a refrigerator, TV, Microwave, etc. Good place to get away for a few minutes without going far.

It took us a while to get settled in because we had to wipe down all of Matthew's stuff with this disinfectant solution. Anything that touches the floor is considered "dirty", so everytime he gets out of bed, he has to put these footies on to walk around on the floor. Then he has to take them off before getting into bed. There is a 12-year-old girl in BMT #2 who was admitted today, also. She will get her BMT the same day as Matthew. Her sibling was a match for her.

Matthew's child life specialist left a gift for Matthew - A Gameboy Advance and 2 games. They get some money from an organization called Friends of Kids with Cancer, to get the BMT patients something new to keep them occupied. Matthew is playing it now, which is why I am able to get on his laptop. He is in surprisingly good spirits.

Julie and I went looking at wedding dresses yesterday. I think that she found "the one." She looked so beautiful in it. She will be home until Sunday. She will be back next weekend for Easter.

Wednesday, March 20, 2002 at 08:29 AM (CST)

Day –6
Well, we have been making a list and getting things ready to go down to the hospital on Friday. Yvonne, the transplant coordinator, called yesterday to let us know what time we need to be down at the hospital on Friday – between 1:00 and 1:30 pm. Wow, it is getting close. As it gets closer, I have a lot of fears/doubts running through my mind. I have asked Matthew if he is nervous/worried/etc. and it doesn’t seem to bother him, so I guess I will worry for both of us. Yesterday morning I woke up and started thinking about all that is happening and I just started crying. I started questioning whether we are making the right decision – not about the transplant, itself, because we don’t have a choice. If Matthew doesn’t have the Bone Marrow Transplant, he will die. I was concerned about the donor not being “a perfect match,” and all the complications that might happen. I remembered a transplant doctor in Milwaukee that I spoke with in December when Matthew relapsed. I got his name through the doctor I work for, Dr. Hendershot. Dr. Hendershot has a good friend who is a pediatric oncologist in Chicago, and she referred me to Dr. Margolis in Milwaukee for a second opinion. He was such a compassionate, caring person who patiently offered me his thoughts on what was happening and the options he would recommend. Even though he did not tell me what to do, he validated what Matthew’s doctor was recommending. So, yesterday I e-mailed Dr. Margolis with my concerns, and again he very patiently reassured me that my worries were normal and that he felt that Matthew was in good hands.

While talking with Yvonne yesterday, I also found out that the donor is actually an 11/12 match, rather than a 10/12 match, which is better. Yvonne also said that one of the donors liver enzymes was slightly elevated at 60 (normal is 0 – 40), but that they were not concerned. The National Marrow Donor Registry was just obligated to inform us of this finding. This could simply be from the donor having a drink of alcohol the day before the blood draw. Their plan is to start Matthew on a low dose of heparin (a blood thinner) to hopefully prevent something called VenoOcclusive Liver Disease (VOD) which can be a life-threatening complication of the high doses of chemo and radiation Matthew will receive to get him ready for the transplant. These can cause the blood vessels in the liver to swell preventing blood to move through the liver. The heparin will thin the blood to make it flow through easier if this does happen. They are doing this because of the elevated liver enzymes of the donor, and also because Matthew’s liver enzymes are occasionally elevated from the chemo he has received.

Last night,while getting ready to go down Friday, I was organizing the binder they gave us when Matthew was first diagnosed in March, 2000, to keep track of labs, chemo, etc. As of today, since Matthew was diagnosed almost 2 years ago, he has been in the hospital for 155 days, has received 33 units of Packed Red Blood Cells (blood), 32 units of Platelets, has had 19 lumbar punctures with chemo in his spinal fluid, and has had 8 Bone Marrow Aspirations. That is certainly a lot for someone his age to have experienced. Anyway, enough technical talk.

Last night one of Matthew’s favorite nurses from Children’s, Mary, came by with a gift for Matthew (she is the one that Matthew let shave the back of his head several weeks ago when his hair fell out). She is pregnant (due any day) and, sadly, will be on maternity leave while Matthew is down for the BMT. She brought him a basket with goodies. She is such a good nurse for the teens – she always jokes around with them. Hopefully she will have the baby today or tomorrow and Matthew and I can visit her in the hospital.

I just want to take a minute to thank each and every one of you who sign Matthew’s guest book. You are all so kind, you bring tears to my eyes with your good thoughts and prayers. God Bless You.

Monday, March 18, 2002 at 08:55 PM (CST)

Day -8
Matthew had a pretty good weekend. He still had nausea off and on, but did manage to eat well. He tried to get out and go to Dierberg's with me on Sunday, but ended up having to go back out and sit in the car because he felt sick to his stomach. He wanted to have turkey, mashed potatoes and gravy, so Saturday night his Grandma and Grandpa Hallemeier, and Grandmother Fackler came over and we had "Thanksgiving in March." It was very good.

I drew Matthew's blood today for his counts. His Hemoglobin was 10.6 (normal is 14.0 - 18.0), Platelets were 169 (normal is 150 - 450), but his White Blood Cells (WBC) were only 0.7 (normal is 5.0 - 10.0) with an ANC of only 210, so he is neutropenic and definitely is susceptible to infection right now. Hopefully he will not start running fevers or get sick before Friday when he goes in for the Bone Marrow Transplant. This low WBC and ANC is normal, especially since he has been on an oral chemo medicine since last week. He took the last dose last night, so hopefully his WBC will start coming up. I still don't know what time he is to be down at the hospital on Friday. Probably sometime in the afternoon. They will start IV fluids to get him well hydrated for the first high dose of Cytoxan on Saturday.

We have been trying to make a list of the things that he wants to take down to the hospital Friday. He will take his Playstation 2 and hopefully his laptop, if we get it back and fixed. He wants to take the comforter off of his bed, but I will have to wash it in hot water and put it in a plastic bag until we get down there. Everything will have to be wiped down with a germicidal solution before it can go into his room. He wants to take his own pillow (the ones down at the hospital are not comfortable), but I will either have to wash it in hot water and seal it in plastic, or else get him a new one and keep it wrapped until we get down there. Once he is admitted to the Bone Marrow Unit on Friday, he will not be able to leave his room until he can go home. This could be anywhere between 4 - 6 weeks on the average. When he is admitted, I will post the hospital address on the website so if anyone would like to send a card, I am sure Matthew would appreciate it. I still would like to at least get a thank you card for the donor. We cannot contact him, except through the Bone Marrow Transplant Coordinator and the National Marrow Donor Registry. They will censor anything that is sent so that no identifying information gets through. The person who delivers the marrow can take a card or something back to the donor. We don't know where he is from. I don't know if he is told the age and disease that Matthew has, but I don't think so. After a year, if both parties are willing, we can correspond and/or meet.

Julie left for New Orleans (spring break) last Friday morning, so hopefully she is down there now. She was going with about 6 or 7 girlfriends. She will be home Thursday. Hopefully we will have time to go wedding dress shopping Thursday afternoon or Friday morning. Christopher called last night and his shoulder is feeling better every day. Hopefully he can get started on his physical therapy this week. It is hard for him to find the time to do it with his busy class schedule.

Thanks again for all of the prayers. They mean a lot to us. Please continue to keep Matthew in your prayers.

Wednesday, March 13, 2002 at 07:50 PM (CST)

Day -13
Wow, two posts in one day. Just wanted to let eveyone know that Matthew is home. When they drew the Methotrexate level at 4pm, it was 0.17 - good enough to go home ( He had to be 0.2 or lower). We were just walking down to the cafeteria to look for something for Matthew to eat for dinner, and the nurse called us as we were going down the hall and told us the good news. Needless to say, we turned around, went back to the room, packed up, and drove home. Matthew would much rather find something to eat around home. His back is hurting him where they did the Bone Marrow Biopsy, but other than that he is feeling pretty good and so glad to be home.

Wednesday, March 13, 2002 at 02:08 PM (CST)

Hi. Matthew is still in the hospital waiting to clear the methotrexate chemo he got. I am updating this site from the Family Resource Center because Matthew's laptop is broken---he spilled water on it. So we will have to see about getting it fixed or something before the BMT. The Family Reasource Center is kind of neat - I have never been here before. They have all kinds of books and literature available, and will also help you do searches for information on the internet. They also have three computers with internet access so you can check e-mails, etc.

Anyway, back to Matthew. He will have his first level drawn at 4pm to see if he can go home. If not, they will repeat it in 12 hours, at 4 am. Hopefully we will be home either tonight or tomorrow morning. They repeated the Bone Marrow Aspiration this morning to make sure that he is still in remission. Dr. Wilson said that it is still clear, which is very good. Before Matthew relapsed, I never really worried about the results of the Bone Marrow Aspirations, but since he relapsed, I always worry until I hear that they are clear. I get this horrible feeling in the pit of my stomach that they will come back and say that he relapsed again. So, he is all set for the Transplant. Matthew has been having some chest pain the last few days, so they repeated the Echocardiogram and EKG. The cardiologist was just in to see Matthew and said that it looked normal and that they would continue to watch and follow him.

Matthew is feeling pretty good. It is so beautiful outside that I hope that later I can get him to take a little walk outside. On the 8th floor, there is a garden on the roof with chairs, benches, a little stream with a bridge. There are flowers and trees. It is beautiful. It is a nice place to just get away and get some fresh air.

I know that some of my entries can get a little technical. It is hard because I get so used to the language, that I forget that most people don't know the terms. Please e-mail me or ask in the guestbook if you don't understand something I post. Have a good day and enjoy the sunshine.

Monday, March 11, 2002 at 09:00 PM (CST)

We have a date!!!! We finally have a date for the Bone Marrow Transplant - it is March 26. When we got down to the clinic this morning, Yvonne, the transplant coordinator, told us the good news. Matthew will be admitted on Friday, March 22, in the afternoon. They will start IV fluids to get him prehydrated for the high doses of chemo. On Saturday and Sunday, he will receive toxic doses of Cytoxan (Cyclophosphamide). He has received this chemo before, but not in this high of a dose. Then on Monday, March 25, he will receive Total Body Irridiation. The combination of the chemo and radiation will basically kill off his bone marrow to make room for the donor marrow. This will be infused on Tuesday, March 26. The actual infusion of the donor's marrow will only take about 15 - 20 minutes. It is kind of like getting a blood transfusion. Then we wait for the donor marrow to start to make platelets, red blood cells, and white blood cells for Matthew. This is called engraftment. It can take anywhere from 7 - 14 days. During this time, he will need multiple Blood and Platelet transfusions and will have absolutely nothing to fight infection. In addition to a 0 ANC, he will have no immunity to the germs, etc. that he had developed. They will do a bone marrow biopsy 1 month later to see what % of Matthew's marrow is the donors - hopefully close to 100%. Anyway, the day of the Bone Marrow Transplant is day 0, so today is officially day -15 (and counting).

Matthew's blood counts were high enough for him to be admitted for chemo today. This is to hopefully keep him in remission until the Bone Marrow Transplant. Hgb was 11.9 (normal 13.8 - 17.2) Platelets were 226 (normal 140 - 440), and White Blood Count (WBC) 1.3 (normal 3.8 - 9.8) with an ANC of 793, which is low, but that is okay. Mary, one of Mattew's favorite nurses, was in charge, so she let us have one of the bone marrow rooms for this admission for IV Methotrexate. It is really nice and has a separate phone line for the computer hookup. I am actually working on his laptop in his room. I will stay the night tonight. The Methotrexate started at about 3pm, so they will run it until 3 pm tomorrow, then draw the first level at 3pm on Wednesday. If it is low enough, meaning that he has cleared the Methotrexate from his system, then he can go home. Otherwise, they will increase his IV fluids to help flush the Methotrexate out of his system, and recheck a level 12 hours later. They will continue drawing levels every 12 hours until he can go home. They will need to do another Bone Marrow Aspiration at some point before the transplant to make sure that he is still in remission. They were going to have him come back next Monday for it, but Matthew asked if they could do it while he is in for this chemo, so I think that they will do it on Wednesday.

It is so good to read all of the entries in Matthew's guestbook. We appreciate all the good thoughts and prayers. Good night....

Sunday, March 10, 2002 at 02:08 PM (CST)

Well, we have had an uneventful few days. We have kind of hung close to home and done a lot of BBQ and Blockbuster. We did venture out yesterday for a movie -"Blackhawk Down"- and then ate out. Matthew wasn't feeling 100% but he went anyway. He will be admitted tomorrow for another round of 24-hour IV Methotrexate. He will go to the clinic around 9:30 or 10:00 am - whenever he gets up and moving around. After having blood drawn to make sure that his counts are high enough for chemo, they will start IV fluids to start to hydrate him for the chemo. Since he hasn't had chemo for a while, his counts should be okay. The IV Methotrexate is hard on the kidneys. They will give him lots of IV fluids to help flush it through his kidneys. When we get the counts back and they are okay, he will be admitted to 9 West (our home away from home) for chemo. IF we are lucky, they will get the chemo started by 3pm. IT will run until 3pm Tuesday. At 3pm Wednesday, they will draw the first level to see if he has "cleared" the Methotexate. If not, they will increase his IV fluids and recheck a level 12 hours later. They will continue drawing levels every 12 hours until he is low enough to go home. Last round, it was about 48 hours after the end of chemo that he cleared it. Hopefully we will find out the new date for the Bone Marrow Transplant. This round of IV Methotrexate is to hopefully keep him in remission until the Bone Marrow Transplant the end of March.

Christopher is recovering from his shoulder surgery as expected. Dirk is taking him back down to Wash U as we speak. He couldn't drive, so he left his car at home. I will pick him up Tuesday and take him to see the surgeon for a follow-up visit. Wash U is only a few miles from Children's Hospital, so it will work well since I will be down at the hospital with Matthew.

I talked to Julie last night. She got a new car last time she was home, a VW Jetta. She is enjoying it a lot. It is a cute little car. She and some of her roommates and friends are going to New Orleans for spring break. They will leave Thursday or Friday and will be down until the following Wednesday, I think. Then she will be home for a long weekend before going back to Murray State. Since she graduates in May, she will be almost done.

Wednesday, March 06, 2002 at 04:20 PM (CST)

Well, we have had a change in plans. We got a call from Yvonne, the Bone Marrow Transplant Coordinator, yesterday. She said the the donor had a family emergency and would not be able to donate next week. He is still interested in being the donor, he just had something come up and wants to donate the last week in March. Yvonne said that we could not know the reason (confidentiality issues) and neither could she. Yvonne did say that the representative from the National Marrow Donor Registry who told her about the change in plans stated that it was a legitimate reason and that if we knew, we would understand. So, now we have to get ourselves unpsyched and change our timeframe. I am sure that this is happening for a reason, however, I don't know what that reason is or if we ever will.

Since the transplant will be delayed over 2 weeks, Matthew will be admitted Monday for still another round of chemo - the 24-hour IV Methotrexate and then he will have to stay until he clears it. We have done this a lot, and Matthew tolerates it okay. Last time it took two days for his levels to drop low enough to come home. Hopefully, this will keep him in remission. Please say a few extra prayers for him to remain in remission until they can get him to transplant. Matthew, of course, is not disappointed at all. He is glad for the temporary reprieve. They will probably have to repeat the Bone Marrow Aspiration before transplant to make sure he is still in remission. He has to have had one done within about 4 weeks of the transplant. He may have to have some of the other preliminary testing redone because some of them also have to be done within 4 weeks of BMT.

Christopher had the surgery on his shoulder today. We had to be at the hospital at 8:30 am for surgery at 10:00 am. Of course, it was closer to 11:00 am before he went to the Operating room. He was done at 1:00 pm and we were home at 3:00 pm. He had a nerve block to his shoulder (in addition to general anesthesia) and his arm from the shoulder down is numb. He said that he can't feel it at all, but the advantage is that it also doesn't hurt much. They said that once the block wears off, he will probably hurt pretty badly. He will go back to see the surgeon on Tuesday.

Monday, March 04, 2002 at 08:31 PM (CST)

We had a busy day down at the clinic today. We started out at 9:20 with a meeting with the social services department. We then met with Dr. Wilson, Matthew's primary oncology doctor. Matthew didn't get any chemo today, because they want him to be in good shape for the transplant. Dr. Wilson just sat and talked to us. They drew his blood to check his counts. They were pretty good - WBC 2.4, but I don't know what his ANC was. His Platelets were a whopping 147 and his Hemoglobin was 10.0.

Then we met with Yvonne the transplant coordinator. She answered any questions we had and kind of talked about "the schedule." We still don't know an exact date!!! It will be either Wed, Thurs, or Fri. The donor did get clearance from his doctor late last week. I didn't know that this had to be done within 3 weeks of transplant. They also recheck his blood for exposure to viruses, hepatitis, AIDS, etc. The cells that they harvest from the donor and give Matthew are called Stem Cells. Stem Cells are the very basic cells produced in the bone marrow. They can either become a WBC, a Red Blood Cell, or a Platelet. There are two ways that they could get the Stem Cells from the Donor. They can either take it from the Bone Marrow, in which he will be sedated with general anesthesia, and then they will do multiple sticks into the hip bone to withdraw bone marrow containing the stem cells. The other way is to give him 4 - 5 days of Neupogen to increase his WBC (also stem cells) and then harvest the stem cells via peripheral blood, which is kind of like donating platlets, in which the blood is removed, passes through a machine where the stem cells are removed, and then the rest of the blood is given back to the donor. The donor will probably donate bone marrow. Anyway, if the marrow is donated on Wed, Matthew would be admitted to Children's Bone Marrow Transplant Unit on Saturday afternoon. They will give him lots of IV fluids overnight because the chemo he will get is very hard on his kidneys. He will get high doses of Cyclophosphamide (Cytoxan) at 8:00 am Sun and Monday along with a drug called Mesna to help protect his kidneys. Then on Tuesday he will get one dose of Total Body Irridation (TBI). Most hospitals give the TBI over several days (usually twice a day for 3 - 4 days), but Children's has been doing a study that shows that one higher dose has fewer side effects and is better tolerated than multiple lower doses. The total dose that Matthew will get is lower than the sum of the multiple doses normally given(if that makes sense). Then he will get the Bone Marrow Transplant on Wednesday. This will be called Day 0. If the donor goes in on Thursday or Friday, the dates are pushed back 1 or 2 days, respectively.

This is long enough for tonight. I will update more tomorrow and tell you want is involved after the Bone Marrow Transplant and the risks involved. Hope everyone is staying warm. Please continue to keep Matthew in you prayers.

Friday, March 01, 2002 at 09:20 AM (CST)

Where has the week gone? It is already Friday, and we have not done anything fun (unless you call going to the dentist fun - ha!). Matthew has not really wanted to go anywhere this week. He has been working on his laptop, loading things on it to take down to the hospital for the Bone Marrow Transplant so he can "stay connected." They have a separate phone line in each of the BMT rooms for computer hookup, which is nice. I will be able to read and update this site. They also have a WATTS line, so we can make long distance calls.

I drew Matthew's CBC yesterday. All of his counts were up, which is good. His bone marrow is recovering from the large doses of chemo he got in early Feb. They were as follows:
Hemoglobin 8.7 (still low, but as expected)
Platelets 63,000 (also low, but okay)
WBC (White Blood Cells) 12.4 with and ANC of 10,912!!!
The high WBC/ANC is due to the Neupogen he has been getting to raise the WBC. He has had a lot of bone pain in his legs and arms from the Neupogen the last few days. This is because the bone marrow is working overtime to produce White Blood Cells. He stopped the Neupogen last night, so hopefully the pain will ease in the next day or so.

It is so nice to read all of the good wishes and thoughts/prayers in the guest book. I usually print them off for Matthew or read them to him. He doesn't particularly like to look at this website. I think that he just doesn't want to be reminded, any more than he has to, that he has leukemia. Dirk and I, however, check the site at least daily. Thank you for your prayers. They mean a lot.

Julie will be home this afternoon. I am a little worried about her driving with the threat of snow, but she is a good driver. However, I will rest easier when she is home. Looking outside now at the sunshine, it is hard to believe the forecast. Christopher will be home tomorrow.

Tuesday, February 26, 2002 at 10:04 PM (CST)

Matthew has had a pretty good week so far. I drew his labs on Monday. They were:
Hemoglobin 7.7 (they will wait until he is 7.0 before giving him blood)
Platelets 29,000
WBC 2.4 with ANC 1728.
The increase in the WBC and ANC are due to the Neupogen that he has been getting daily. This will cause the bone marrow to produce more white blood cells (WBC) to fight infection. I will redraw a CBC on Thursday to see how his blood counts are.

Matthew went to the dentist today - no cavities and his teeth and gums are in good shape. He needed to be cleared by the dentist for the Bone Marrow Transplant. I thought that this was the last pre- transplant workup he needed, but today I found out that we have to meet with the transplant coordinator, Yvonne, and the transplant doctor, Dr. Hayashi, on Monday. We will sign the consent forms for the transplant and ask any questions we have thought of since the last meeting. I will have to make a list this weekend. We will also meet with the child life specialist, Cindy, who will help keep Matthew entertained in the Bone Marrow room and also with the psychologist, again. The psychologist who we met with several weeks ago went on maternity leave, so we will meet with the one filling in for her.

We still don't know the exact date for the transplant. I don't know what the hold up is. The date of the transplant will be day 0. The days before the transplant are numbered as negative numbers like -3 (three days before transplant) and the days after are numbered positive as in +3 (three days after transplant. As it is getting closer, it is becoming more real. I am getting very nervous about the whole thing, but I know that we don't have any other options if we want a cure for Matthew. There are so many complications that could happen.

Julie and Christopher will both be home this weekend. Julie will come home Friday and leave Sunday. Christopher will be here Friday and will be home all next week for his spring break. He will have outpatient surgery on his shoulder on Wednesday. As I have said before, I LOVE having all my kids home.

Saturday February 23, 2002 7:42 PM CST

Matthew is HOME!! His counts finally came up enough for him to come home. I was surprised when I went down to the hospital to see him this morning, and he told me that he got to come home. His ANC was high enough to stop the antibiotics. He did need a unit of platelets yesterday and today. His counts have been

Wed: Hemoglobin 8.9, Platelets 11 (received one unit), WBC 0.3, ANC 24.
Thurs: Hemoglobin 9.0, Platelets 36, WBC 0.3, ANC 60
Fri: Hemoglobin 8.6, Platelets 16 (received one unit), WBC 0.4, ANC 80
Sat: Hemoglobin 8.1, Platelets 12 (received one unit), WBC 0.7, ANC 416

The neupogen he is getting to increase the WBC/ANC is finally working. Since his hemoglobin and platelets aren't staying up yet, he will probably need platelets and/or blood on Monday. I will draw his labs Monday morning to see. He still is not eating very much, so he came home on TPN, which is an IV nutrition. He will get it over 12 hours at night, so he won't have to be hooked up to an IV pump during the day. Hopefully we can add a few pounds on him before the Bone Marrow Transplant.

Wednesday he started to loose his hair. By Friday, it was very sparce in some areas, so we shaved it all off. He did the front and one of his favorite nurses, Mary, shaved the back. He looks so cute bald. It doesn't seem to bother him too much.

While Matthew was down at the hospital, they finished up all the preliminary testing needed before the BMT. The only thing left is the dentist. HE has an appointment on Tuesday, unless his ANC is not over 500 and/or his platelets are low. We still don't know the exact date, which is very frustrating. It will be the second week in March. He will definately be down in the Bone Marrow Transplant Unit for his 16th Birthday on March 29. When he was in the hospital this week, he had a roommate for the last three days. His roommate had his 17th birthday at the hospital. The nurses said that it seems like a lot of the cancer kids seem to be in the hospital for their birthdays. I guess that this is because they are in the hospital so much of the time, that the odds are that they will have their birthday while there.

Friday was my last day at work for a while. I will take a leave of absence until July 1, to take care of Matthew. I am hoping that Matthew will feel pretty good the next two weeks before the BMT and that we can do something fun. There are several good movies he would like to see and several restaurants that he would like to visit. It will be nice to be home.

Thank you to everyone who has visited Matthew's web page and have signed his guestbook. We are always happy to read all the good thoughts that are coming his way. Thank you for all the prayers. He needs them so much right now.

Saturday February 23, 2002 7:29 PM CST

Matthew is HOME!! His counts finally came up enough for him to come home. I was surprised when I went down to the hospital to see him this morning, and he told me that he got to come home. His ANC was high enough to stop the antibiotics. He did need a unit of platelets yesterday and today. His counts have been

Wed: Hemoglobin 8.9, Platelets 11 (received one unit), WBC 0.3, ANC 24.
Thurs: Hemoglobin 9.0, Platelets 36, WBC 0.3, ANC 60
Fri: Hemoglobin 8.6, Platelets 16 (received one unit), WBC 0.4, ANC 80
Sat: Hemoglobin 8.1, Platelets 12 (received one unit), WBC 0.7, ANC 416

Tuesday February 19, 2002 11:18 PM CST

I just got home from the hospital and will write a quick update on Matthew. He is still down at Children's Hospital. He is feeling much better, but we are still waiting for his counts to come up. He has been in such a good mood yesterday and today that you can tell he is feeling better. The blood cultures that they drew from his central line last Thursday when he spiked the fever are still not growing anything, which is good news. They should be final tomorrow, meaning that they didn't grow anything in 5 days and they will assume that they are not going to grow anything. He is still on the antibiotic that they started and will probably stay on it until his counts (ANC) come up above that magic 500 mark. He has not run a fever since last Friday.

His ANC has been 0 since last Thursday, meaning that he cannot fight infection. They did have 10 white cells to count today, but they were all immature white cells, or lymphocytes, which don't fight infection. Yesterday his Hemoblobin was 6.8, so he did receive 2 units of blood. It was 9.4 today. His Platelets yesterday were 8,000, so he also received a unit of platelets. Today his platelet count was 23,000. No blood or platelets today. Hopefully they will start to go up on their own. The chemo he got two weeks ago was really strong to keep his counts down so long. In addition, his bone marrow is tired from being batted with chemo so often, that it is taking longer to recover. It has also caused his hair to start to fall out again. There are patches of bare skin on his head, and a lot of hair on his pillow and clothes. It will probably be completely gone by the weekend. It has been so long since he lost all his hair. It doesn't seem to be bothering him much. Of course I think he looks cute.

The news on the Bone Marrow Transplant is that the donor is avialable to donate on March 13, 14, or 15. The transplant coordinator asked him for a specific date, so we should know in the next day or so when it will happen. The waiting and not knowing a specific date is very frustrating. Matthew will be glad to have several weeks home to get strong for the transplant. I will take a leave of absence starting Monday, so maybe we can do some fun things before he goes in for the transplant.

Matthew is still on TPN down at the hospital, and they are planning to send him home on TPN until the transplant to try to get some weight on him and give him some extra nutrition. It will run into his central line over 12 hours at night, so he will not be hooked up to an IV pump during the day.

Christopher had an appointment with an orthopedic surgeon who specializes in shoulders today. He will need to have surgery on his shoulder since he keeps dislocating it. This well be two weeks from tomorrow, when he is on spring break. It will be an open surgery (as opposed to arthroscopic) and will be done as an outpatient.

Sunday February 17, 2002 7:36 AM CST

Matthew is still down at the hospital. He is not running a fever any more, but his counts are still very low. Friday, his Hgb was 7.4, Platelets 10,000, and WBC 0.1 with an ANC of 0. They could only find 2 white cells to count and they were both immature cells called lymphs. These are not white cells that fight infection. He did receive one unit of platelets Friday and he did not have any problems this them as far as a reaction.

Yesterday, his counts were Hgb. 7.5, Platelets 25,000, and WBC 0.1 with and ANC of 0 (they did find 7 cells to count but they were all lymphs). He did not receive any blood and platelets. He continues on the antibiotic, and so far his blood cultures have remained negative, meaning there is no bacteria growing in his central line or his blood, which is good. They are giving him the Neupogen every day to try to bring his WBC up, but so far no luck. This is normal after the nasty chemo he got last week. His groin is doing much better, new skin forming and starting to itch meaning it is healing. Not as painful, which is good. I don’t know what his counts are today, hopefully better.

He is so bored down at the hospital. He really does hate being down there. HE would rather be in his own bed. Hopefully by tomorrow or Tuesday, if his blood cultures are still negative and he is not running any fevers, they will let him come home even though his ANC is still low. Usually they like it to be 500 or higher to come home, but we have had him at home with an ANC of 0 before. In fact, he is probably safer at home because of fewer germs. He is still on the TPN for nutrition, because he doesn’t like the hospital food at all and still does not have his appetite back from the chemo. I am sure once he comes home he will eat my “good home cooking.” I don’t know how we will cope being down at the hospital for about 4 – 6 weeks when he has the Bone Marrow Transplant. Will have to start collecting movies and other things to do. Everything has to be either new or cleaned for him to have. The exception is movies, as long as he doesn’t handle them. He can have his laptop and thing like that after they are cleaned in a special solution to kill all the germs.

Dirk and I got an evening out last night – much needed. My office won a trivia contest last summer and won tickets to “Phantom of the Opera.” We all got dressed up and went out to eat at a nice restaurant then to the opera. It was fun. Grandma and Grandpa went down to visit with Matthew for a few hours.

Thursday February 14, 2002 10:12 PM CST

I just got back from Children’s Hospital. Matthew felt bad when he went to bed last night and thought he was running a temperature. I took it and it was 99.7. Anyway, he woke up at about 3:00 am running a temp of 100.7 and feeling really bad. I didn’t want to give him tylenol to mask the fever, so I waited about 15 minutes and retook it and it was 100.9, so I called the oncology doctor on call. Of course, since his ANC was only 10 yesterday morning, I was told to take Matthew down to the Emergency Room. When we left the house at about 3:30, his temp was up to 101.4. When we got to the ER, they put him into a private room right away, since there were so many sick, coughing kids in the ER. After they drew a CBC to check his counts and blood cultures out of both ends of his central line to see if there is an infection in the line or in his blood, they started him on an antibiotic, Ceftazadine. He was admitted to 9 West at about 7:00 this morning.

They got the results of this counts back
Hgb 6.4
Platelets 4,000
WBC 0.1 with an ANC of 0

This is very serious to have an ANC of 0 and be running a fever, because he has nothing to fight the infection. They gave him a unit of platelets and he did fine with them. Then they started a unit of blood, and he had an allergic reaction to it. He broke out in itchy hives and had chills. They stopped the blood and gave him some IV benadryl and Tylenol. They did not give him any more of that unit of blood. Of course Matthew felt terrible to begin with, but this made him feel a lot worse. They gave him some time to let the benadryl work, then gave him his antibiotic which was due. He finally got a unit of blood at about 4:30 this afternoon. He did fine with it. They will recheck a CBC in the morning, and my guess is he will need more blood and platelets. When he runs a fever, his body “eats up” platelets.

He has been running fevers off and on all day – up to 101.8 and feels lousy. I stayed down at the hospital all day and Dirk came after work. He will spend the night tonight and I will go back down first thing in the morning and stay tomorrow night. They also started him on TPN, again. He was on this quite a while ago. It is total nutrition that they give IV into his central line. He hasn’t gotten his appetite back from the chemo last week, and he never eats in the hospital. He will probably be down there on antibiotics until his ANC gets up above 500. Please say an extra prayer for Matthew. He is worried that he won’t be strong enough for the Bone Marrow Transplant. He is getting very tired of feeling so bad all the time.

Wednesday February 13, 2002 9:09 PM CST

Matthew had a long day down at the hospital today. Dirk took him down. He had an appointment in radiology for the GFR to make sure that his kidneys are in good shape. They gave him some contrast/dye to drink and also injected some dye into his central line. Then they drew blood every 15 minutes for the first hour, then every 30 minutes for the next hour, and then hourly for the next two. Mandy, Matthew’s nurse from the clinic, came down and drew blood to check his counts as soon as he got down to the hospital. His counts were very low:
Hemoglobin 6.6 (Normal 13.8 – 17.2)
Platelets 22 (Normal 140 – 440)
White Blood Count (WBC) 0.2 (Normal 3.8 – 9.8)
ANC 10
After he finished with the GFR, he went up to the clinic and Matthew got a unit of Packed Red Cells (Blood). I think that they would have given him 2 units of blood if they had time. Matthew is to go down again on Friday for them to check his blood counts, and he will probably need platelets and another unit of blood. This is what they expected from the strong chemo drugs that he got last week.

Matthew also had a chest x-ray (which was normal) and saw Dr. Mansur, the Radiation Oncologist. His groin is getting a little better, but is still very tender. Yvonne, the Bone Marrow Transplant Coordinator talked to Dirk and Matthew a few minutes. The 23-year-old male that they were checking out as a donor did not match much past the initial 6/6 areas. They will plan to use the 44-year-old male. He matches further to a 10/12. They will contact him today and hopefully by Friday we will know the exact date of the BMT. This will depend on the donor’s schedule and we will work around the best date for him. It sure seems like it has been a long process, but they told us at the beginning that this part just takes time to make sure the have the best match for Matthew. I guess that we are just anxious to get moving on this before the leukemia has a chance to come back.

One thing that I did not know was that the donor has a choice of donating stem cells in one of two ways. He can either donate peripheral stem cells, which would be done by taking blood out of his arm and running it through a pheresis machine to remove the stem cells and then putting the rest of the blood back. The other option is to donate stem cells from the bone marrow, which would involve general anesthesia while they make numerous “holes” in his hip bones to remove the marrow. We would prefer stem cells, but the donor center cannot sway the donor either way. They cannot even say what we would prefer. They will just present both methods and will do whichever the donor prefers. We are just thankful that he is willing to give such a precious gift to a perfect stranger.

Monday February 11, 2002 7:17 PM CST

Hi,
Matthew had an appointment with the Bone Marrow Transplant Team today down at the clinic. He met with the child life specialist, who helps the kids understand what is going on with them and also will visit while he is in the hospital and play games, etc. Then he met with the social worker, who helps with any financial/insurance concerns. Finally, he met with the psychologist, Dr. Sylvia, to address any concerns Matthew may have regarding the transplant and to see how he is handling everything he is going through. Still don’t know the exact date of the Bone Marrow Transplant, but they are still shooting for the first week in March. After lunch, we met with Dr. Mansur, the Radiation Oncologist. Matthew’s groin is very red, raw and painful from the testicular radiation. They are concerned about the risk of infection since his ANC is so low and also the low ANC affects healing.

I drew his labs yesterday. They were:
Hgb 8.4
Hct. 23.4
Platelets 78,000
WBC 0.5 with ANC of 65 (Yikes)
They will recheck them on Wednesday, and they anticipate that he will need either blood or platelets, or both.

Wednesday he goes down to the hospital for a GFR to make sure that his kidneys are doing okay. This is a four-hour test, with frequent blood draws. (This is where the central line really comes in handy, because they won’t have to stick him for the blood.) During this time, since he will be down in radiology, he will have a chest x-ray to make sure his lungs are clear. All of these are tests are to make sure that he is in good shape for the transplant. After the GFR, if he needs blood or platelets, he will get them in the clinic. Then Dr. Mansur wants to see him again.

Matthew had a really hard weekend. The chemo he got last week was the worst he has gotten as far as far as nausea, and generally feeling bad. He is feeling better today, but still not eating a lot. He just doesn’t have much of an appetite.

Friday February 8, 2002 7:19 PM CST

Matthew is home!!! Matthew got to come home from the hospital last night. He had a very hard week with the new chemo that he got. He was sick to his stomach all week and couldn’t keep anything down. (not that he likes the food at the hospital, anyway). Since he wasn’t keeping anything down, he came home with IV fluids running 24 hours a day. He also is getting IV Zofran for nausea. He is feeling a little better today. He saw the radiation oncology doctor after he was discharged yesterday afternoon, to have him look at the radiation burns. They are very painful and have gotten worse. Evidently some of the chemo he got this week makes the burn worse. Anyway, he is on Morphine for the pain, and has some cream to put on it. He will see the radiation oncologist again on Monday to see how things are going.

While he was down in the hospital this week, they did some of the preliminary testing for the Bone Marrow Transplant. He had a CT scan of the sinuses to make sure they were still clear from the fungus in his nose, and he had a hearing test, EKG and Echo to check his heart, and an eye exam. Monday we go down to the clinic to meet with the “Transplant Team”. The doctor said that he will probably need blood or platelets by Monday because the chemo he got can cause them to drop quickly. He is also taking the Neupogen again to help bring his WBC (ANC) up.

They are shooting for the first week in March for the BMT. The BMT coordinator said that they had tested 2 of the 6/6 matches they had gotten back, and one was a female who didn’t match completely so they won’t use her. The other was a middle aged male, but they would prefer a younger male. They had four other samples at the hospital to check that were supposedly young males who were CMV negative, which Matthew is. These will be the best match. They will contact the closest match today or early next week and ask for an acceptable date for them to donate the first week of March. This will give Matthew’s counts a chance to come up before they kill off all the cells in the bone marrow before the transplant. They can then push it back a week if Matthew’s counts don’t come up quickly enough.

Monday February 4, 2002 10:01 PM CST

I just got home from the hospital, so I thought I would do a quick update. Matthew had his counts checked first thing in the clinic, and his counts were UP!!!! Hemoglobin rose from 9.1 to 10.2, Platelets rose from 12,000 to 75,000, and his WBC stayed the same (which is okay). They went ahead and did the Lumbar Puncture and gave him the chemo, Methotrexate, in the spinal fluid. They also sent a sample of the spinal fluid to check for leukemia cells in it – it was clear. They did a Bone Marrow Aspiration, and sent it to pathology. Dr. Wilson looked at it up in the clinic and said that he saw about 5% blasts. This is encouraging, because in December they counted 12 – 15% blasts. This means that the two round of IV Methotrexate he has received since he relapsed in December are destroying some of the leukemia cells in the bone marrow. We will wait and see how many of those blasts are actual leukemia cells from the pathology report. Between the IV Methotrexate and the three chemo drugs he is getting this week, hopefully they can get him into remission before the BMT.

When Matthew woke up a little from the medicines they gave him to sleep, he was admitted for the IV chemo drugs, Ifosfamide, Carboplatin, and VP-16. I stayed down at the hospital until they were completed, and he was tolerating them well so far – not too much nausea. Dirk will stay down with him tonight. He is in one of the bone marrow rooms, which are really nice. They are private rooms and have their own bathroom. This is where Matthew will be when he has the actual Bone Marrow Transplant. He gave me instructions to unhook the Playstation 2 so I can take it down to him tomorrow.

Julie got back to Murray State University okay last night. She will probably be home again in three weeks. Christopher saw the orthopedic surgeon today. He will have an MRI of the shoulder Thursday, and see an orthopedic surgeon who specializes in shoulders next Tuesday. The orthopedic surgeon feels that Christopher will at least need arthroscopic surgery and possible open surgery on his shoulder.

Sunday February 3, 2002 7:51 PM CST

I got a call from Dr. Wilson, Matthew oncology doctor on Friday. He wants to admit Matthew tomorrow for more chemo (reinduction). He is concerned that the reason that his counts dropped Thursday is because there is more leukemia in the bone marrow. This could be “crowding out” the cells that product platelets and Hemoglobin (Red Blood Cells) causing Matthew’s counts to drop. If Matthew’s counts are still down tomorrow, he will give Matthew Platelets and then repeat the Bone Marrow Aspiration to see if there are more leukemia cells in the bone marrow (which would not be good). They will also repeat the lumbar puncture to make sure it is still clear of leukemia cells.

Matthew will be in the hospital from Monday through Friday. He will get three days of some new chemo drugs and then a day of extra fluids to help flush the chemo out of his system. He will also get a drug called Mesna to help protect his bladder from one of the chemo drugs. It will take several weeks for his counts to come up before they can do the Bone Marrow Transplant, but hopefully if they can get rid of as many leukemia cells in the bone marrow before the transplant, he will have a better chance for a cure.

Julie was home over the weekend. She left about 6:30 to drive back to Murray State. Christopher came out for dinner Saturday night and dislocated his shoulder again. The same one he dislocated in September. Dirk took him to the ER and the put it back in place put it in a sling to immobilize it. We will try to get him in to see an orthopedic surgeon early this week. Things are definitely never boring around the Hallemeier house. I will let you know how everyone is doing later this week.

Thursday January 31, 2002 7:59 PM CST

Hi, Everyone. Matthew’s labs on Monday (especially platelets) were low. Normal platelets are 150,000- 450,000, and Matthew’s were only 26,000. The platelets help the blood to clot to stop bleeding. When they get real low, people can have spontaneous bleeding. Of course, when the platelets are low, you need to be concerned about anything that could cause trauma – like bike riding, roller blading, etc. or any kind of fall. Anyway, since Matthew’s were so low, the doctor wanted me to recheck his CBC today. I drew his blood this morning and took it to the hospital lab when I went to work. About an hour later, I got a call from the lab saying Matthew’s platelets were only 12,000!!! Matthew’s platelets have been this low before, without any problem. So, I called the clinic with the results, and they just said to watch him for bleeding. They tend to not give these kids platelet transfusions until their platelets drop below 10,000, unless they are having problems with bleeding. Matthew was glad, because he did not want to go down to the clinic today. So, we will watch him. If he doesn’t go down to the clinic on Monday, I will recheck his labs. His ANC was a little higher, 580, but his Hemoglobin was down to 9.1. They generally don’t give him a blood transfusion until it gets down to 7.0. Matthew’s counts have not been this low since a year ago. I guess the IV Methotrexate is doing the job it is supposed to – since it is destroying the WBC, Platelets, and Hemoglobin, it should also be working on leukemia cells.

I got a call from the transplant coordinator yesterday. They still don’t have a date for the transplant, but things are moving fast. Matthew has to have a lot of testing done, and they are starting to schedule these. He will meet with the bone marrow transplant support team a week from Monday. This is the Psychologist, Chaplain, Social Worker, Child Life Specialist and Transplant Coordinator. We will get a tour of the Bone Marrow Transplant Unit. This will last about 4 hours. Matthew will also have to go for neuropsychology testing, dental appointment, eye exam, Echo and EKG to check his heart, a GFR to check his kidneys, PFT’s to check his lungs, ENT visit to check on the fungal infection in his nose (along with a CT of the sinuses) and he will meet again with the radiation oncologist to make sure there are no unexpected side effects from the testicular radiation he received. I am supposed to hear from his primary oncology doctor, Dr. Wilson, tomorrow to see what is planned chemo-wise for next week. They will also do a repeat Bone Marrow Aspiration and Lumbar Puncture before the transplant, to check the amount of leukemia in the bone marrow and to make sure that the spinal fluid is still clear. So much is happening so fast. I feel like we are on a roller coaster ride.

I will take a 2 – 3-month family medical leave soon. Pam, the nurse who will fill in for me at the office, used to work part time for us. This will make it easier since she is familiar with the office, patients, and doctors. She will give her 2-week notice from her current job (she planned to leave it anyway) and will spend a week with me before I leave. This will let me spend all my time with Matthew and help him recover. I will keep you updated as I find out more. Keep Matthew in you prayers.

Julie will be home this weekend. She and Dirk are going to look for a new car for her on Saturday. I plan to take Matthew to the mall to get some things for when he is in the hospital for his transplant. Christopher will come out Saturday night for dinner.

Monday January 28, 2002 2:32 PM CST

Well, we just got back from the clinic down at Children’s Hospital. Matthew had labs drawn and then we met with Dr. Wilson, Matthew’s primary oncologist, and also Yvonne Brooks, the Bone Marrow Transplant Coordinator. We had a lot of questions for Dr. Wilson about treatment plans for Matthew. Since the Cytogenetics came back on the Bone Marrow Aspiration they did on December 21, 2001 showing 16% leukemia cells in the bone marrow, the questions is whether to do a reinduction chemo to try to get that number down before the bone marrow transplant (BMT) or to go directly to transplant. They have done an official search of potential donors this week and from the 30 6/6 matches, they have contacted the closest 9 to go in for further testing. This is good news that they have multiple choices as to a donor. They should be able to get a close match for Matthew and also to be able to be selective. They would like a young male. Also, since these potential donors are willing to go in for further testing, that means that they are probably serious about being a donor. Dr. Wilson would like Matthew to have the BMT in the next 2-4 weeks. If it can happen that quickly, he would prefer to not do a reinduction because this would drop Matthew’s counts (WBC, Platelets and Hemoglobin) a lot and it would take a long time to get them back up for the transplant. They want him in the best condition for the transplant. Also, knowing Matthew’s history of complications when his WBC/ANC are so low, they are hesitant to give him strong chemo to cause his counts to drop so drastically.

However, if they can’t take Matthew to transplant in 4 weeks, they will probably do a reinduction. This would consist of three very strong chemo drugs, Ifosfamide and Carboplatin, neither of which Matthew has gotten so far, and VP-16, which he has had before. It would require a 4-day hospital admission and then wait for his counts to recover before the transplant. We should know by late this week when the transplant will take place. This is so scary, because there are so many complications that can happen with a BMT. The patients are so sick and so susceptible to infection. They can also have complications (sometimes severe) from Graft Versus Host Disease (GVHD). This is when the donor cells starts to “settle” in Matthew’s bone marrow and the new donor cells recognize that they are in a foreign place. They can start attacking Matthew’s body. Matthew will probably be in the hospital for about 4 weeks after the transplant and also several days before to receive very high doses of chemo and total body irradiation to kill off his bone marrow to make room for the new (donor’s) bone marrow. This will leave him with no WBC, Platelets or Red Blood Cells. Please remember Matthew in your prayers.

Matthew did finish up with his testicular radiation last Friday. He did fairly well with it. He is glad that he does not have to go down every day anymore. Once they set up the transplant date, Matthew will have to go through extensive testing to make sure that his heart, kidneys, liver, lungs, etc are strong enough to withstand the transplant, so the next several weeks will probably be busy. I will try to keep this page updated with his progress.

Sunday January 20, 2002 9:05 PM CST

I just got home from the hospital – minus Matthew. They drew his 24-hour Methotrexate level at 3:30 and it was still too high for him to come home. So, they increased the rate of his IV fluids and he will try to drink more to flush the Methotrexate out of his system. They will recheck a level at 9:30 tonight. The results probably won’t be available until about 11:00, but he wants to come home if they are okay. I stayed down at the hospital until about 8:00 tonight, then Dirk came down and relieved me. He will stay until Matthew can come home.

I talked to Dr. Wilson, Matthew’s primary oncology doctor down at the hospital today. He gave me a copy of the cytogenetics report that they did on the Bone Marrow Aspiration from December 21. It did show that he had some leukemia cells in the bone marrow, indicating a relapse, but not a lot – about 16%. We kind of suspected this, but not this many. This will definitely mean a Bone Marrow Transplant and soon. Should know in the next week what the time-frame will be. He will have a lot of tests to make sure that his heart, kidneys, liver, etc. are healthy and strong enough to withstand the transplant.

Saturday January 19, 2002 7:50 AM CST

I drew Matthew’s blood on Thursday, and his counts were good enough to get chemo on Friday. His ANC was 1880, which is well above the 500 required for chemo. This is because of the Neupogen to bring the white count up (ANC) and also not giving the oral chemo, 6MP, for the week. He went down to the clinic yesterday, and was admitted to 9 west for the 24-hour IV Methotrexate infusion. He didn’t get to the floor until about noon, because the floor was pretty full. We walked over to get his radiation, and then they started the chemo at about 3:30. It will run until 3:30 today. At 3:30 on Sunday, they will check a Methotrexate level and if it is low enough, meaning that his body has cleared the Methotrexate, he will be able to come home. If it is not low enough, they will increase his IV fluids and recheck a level 6 hours later. They will continue every 6 hours until the level is low enough. Last round he was clear at the first check 24 hour after the chemo finished. Hopefully, we will be as lucky this time.

Dirk came down to the hospital after work yesterday and I stayed until about 9:00 pm. When I went out to go home, it was SNOWING!! It was so pretty, but slow driving home. I will go back down today and will spend the night and stay tomorrow until Matthew comes home. Dirk will probably come home this morning after Matthew gets up and around. Since the floor was so busy, Matthew had a roommate. Hopefully, they will have some discharges today and he can move to a room by himself. There just is not enough room for two patients plus family members in one room.

I talked briefly with the transplant coordinator, Yvonne, yesterday. She said that the official search for a bone marrow donor was underway, and that she is pushing for this to move quickly. She said that it could be as soon as 6 weeks. YIKES. Since they had multiple choices as a donor, they will be able to get the best match for Matthew. This is kind of scary, because it is all happening so fast that I haven’t had time to consider everything involved. Hopefully by the end of the week, they will be able to give me a more specific date for the transplant. I will let you know more as I learn more. Debbie

Monday, January 14, 2002

I took Matthew down to the Children’s Oncology Clinic this morning. He was supposed to be admitted for a 24-hour IV Methotrexate infusion. When they drew his labs and got them back, his ANC was not high enough. His WBC was only 0.7 (normal 3.8 – 9.8) with an ANC of 294. His ANC has to be 500 to get chemo. His Hemoglobin and Platelets were okay. They had him already hooked up to IV fluids and ready to go, so they unhooked him and we will try again later this week. I will stop his oral chemo pills (6MP) that he takes every night and give him Neupogen for three days to try to get his white count to come up . I will redraw his blood on Thursday, and if the ANC is high enough, he will be admitted for the IV Methotrexate on Fri, Sat, and Sun. Since we were already down there, and Matthew had his appointment in radiation at 1:20, we went to the History Museum in Forest Park, and then had lunch in the Central West End. It was good to do something FUN, and Matthew wasn’t at all disappointed to not be admitted today.

We also met with the Bone Marrow Transplant Coordinator, Yvonne. She had some preliminary results of the search for a Bone Marrow Donor. Her preliminary search showed about 20 potential donors. They all were a 6/6 match with Matthew. They will look at each of these donors more closely, and see which is the best match. Then they will start contacting these potential donors to make sure that they are still interested in donating marrow. This is very good news. The more matches you have to choose from, the closer you can come to matching Matthew. This will hopefully lessen the effects of something called Graft vs Host Disease, where the donated marrow recognizes that it doesn’t belong in Matthew. This is one of the biggest complications of the transplant, next to the risk of infection. So, we are on the way.

Julie was home this weekend, along with Brad and his parents. They came up from Atlanta to look for someplace to have the rehearsal dinner. We met them for dinner Friday night. Saturday night they came over to our house for dinner. They are very nice people. Julie will be lucky to have them for in laws. Christopher came out for dinner Saturday night, too, so they got to meet the entire family.

Wednesday, January 09, 2002

A lot has happened since Friday when I posted last. We spent most of the weekend waiting to hear about the HLA results on the rest of us. On Monday, I drew Matthew's blood and took it to the hospital. When I got the results back, I faxed them down to the clinic. I had the horrible feeling that he had relapsed and his white count would be sky high - but it was low, just like it should be. It was 1.4 with an ANC of 444. I know that this makes him more susceptible to infection, but on the other hand, it shows that the chemo is killing cells in the bone marrow-both good cells and leukemia cells. His platelets were also low at 84 and his hemoglobin was lower than it has been in a while at 10.0. When the nurse at the clinic called to let me know that they had received the labs, I asked if she knew anything about the HLA typing results. She told me that the Bone Marrow Transplant Coordinator was going to call me that day (Monday).

I waited all day Monday, but I did not hear anything. I have to admit that I did get my hopes up, thinking that if she was going to call me, that it must be good news. If they weren't a match, I would have expected his Onc. Dr. to call. When I got to the office on Tuesday, I called and left a message on the transplant coordinator's voice mail to please call me. She finally did last evening. Unfortunately, none of us are a match for Matthew. Julie and Christopher are both 3/6 matches. I am a 4/6 match, but don't match on one of the key spots, so they would not use me. We set up an appointment to meet with her and Dr. Hayashi, the Bone Marrow Transplant Dr. after Matthew's appointment with Radiation Oncology today.

Matthew's appointment with Radiation Oncology was at 1:00 pm today. He was there for about an hour. They figured out how to position him to best aim the radiation where it was needed, and "marked" him so they would be able to line the machine up each day in the exact same place. The marks are to stay on the entire time. He will start the actual radiation tomorrow and will go for 12 days.

After that, we met with the Bone Marrow Transplant Coordinator and Doctor. Basically, they feel that since Matthew relapsed while on therapy, they felt that the best chance for him was a Bone Marrow Transplant. If they decide to try to just do the testicular radiation and chemo to try to keep him in remission, if he relapses in the bone marrow, they have essentially used the max of several chemo drugs that would be needed to get him back into remission. So, they will do a search for an Matched Unrelated Donor (MUD). They said that they can usually find a MUD in 80% of the cases. These sound like good odds, but given Matthew's track record, I will pray extra hard for this to happen.

Matthew will be admitted on Monday for another 24-hour infusion of Methotrexate. He will probably be in for Mon, Tue, and Wed. They will take him over for radiation while he is in the hospital. I don't know what chemo is planned after that. The expected length of time from finding a donor until transplant is about 12 weeks, so they will keep him on some type of chemo to try to keep him in remission until the Bone Marrow Transplant.

Julie will be home tomorrow afternoon (Thurs) and then on Friday, her fiance, Brad, and his parents will be here from Atlanta to look for a place to have the rehearsal dinner. We will plan on having them over to the house for dinner on Saturday. Christopher is free and will come, so they can "meet the family!"

Friday, January 04, 2002

We took Matthew down to Children's Hospital yesterday to meet with the Radiation Oncology department, and Dr. Mansur. The plan is to have the "simulation" on Wednesday. At this time they will figure out how to position Matthew for the radiation and they will "mark" him so that they can align everything exactly for each treatment. On Thursday, he actually will get his first radiation treatment. The plan is to do 12 - 15 treatments. He will need to be down at the hospital daily, Monday through Friday for these. They give him a break over the weekends. Other than irritation/burning of the skin, he should have few side effects from the radiation. I will let you know how it goes.

We still don't know what the results of the HLA typing are. I called the clinic to see if they had the results, but they said that they would call us Monday. Keep praying that one of us is a match for Matthew. Have a good weekend.

Tuesday, January 01, 2002

I hope everyone had a Happy New Year. We just hung out at home and watched movies. Matthew felt pretty crummy from the high dose Methotrexate he received Friday and Saturday, but was glad to be back in his own bed. He will go back in the hospital in two weeks to repeat the high dose Methotrexate. We got a call from the Radiation Oncology doctor's office. We have an appointment with them on Thursday afternoon. I guess we will find out what the plan is at that time. My guess is that they will wait until Monday to start the radiation. By then we will hopefully know if Julie or Christopher is a match for a bone marrow transplant. I don't know if they will coordinate the testicular radiation with the transplant or what. I am not sure of the timeframe or how quickly they will want to get the radiation done.

Julie called from Murray, Ky. She got home safely from Nashville where she and Brad spent New Year's Eve. Christopher called from New York. They had a free day on Sunday and Monday they were going to get their assignment of where they would work.

Sunday, December 30, 2001 at 04:40 PM (CST)

I just got the word from Dirk down at the hospital - Matthew has cleared his Methotrexate and gets to come home!!!! They check the level the first time 24 hours after they finish the 24-hour infusion. The blood level has to be <0.2 to come home, otherwise they increase the fluids to try to flush the Methotrexate out of his body and recheck a level in 6 hours. Well, Matthew's level was 0.7. I think that this is the first time that he has cleared the Methotrexate with the first check. He is so happy to get to come home. I spent the night with him last night and came home about noon. He was so uncomfortable down there and just wanted to come home to his own bed, so he will get his wish. Dirk went down at noon and watched the Rams Football game with him. I don't know what the plans are from here. We are hoping to hear from the radiation oncology doctor in the next day or so (probably Wed) about starting the testicular radiation. Hopefully, by Wed or Thurs, we should know the HLA typing from Julie, Christopher, Dirk and I to see if any of us is a match for a Bone Marrow Transplant.

Julie and Brad are waiting for Matthew to get home so that they can say good-bye before they head down to Murray, Kentucky. Tomorrow,they will head to Nashville to spend New Year's Eve with friends. Hope everyone has a good and safe New Year's Eve. We are planning to just stay in with Matthew and watch movies and eat snacks. My favorite kind of evening. I got some of the pictures back from Christmas. I will try to put several in the photo album soon.

Saturday, December 29, 2001 at 08:58 AM (CST)

I took Matthew down to the Oncology Clinic yesterday to be admitted for high dose Methotrexate. We met with one of the oncology doctors, Dr. Crawford, before the admission. He talked to us a little about the plans for Matthew. Basically if Julie and/or Christopher is a match, they will do the Bone Marrow Transplant. It sounds like it will happen fairly quickly, so that the leukemia cannot spread to other areas (like the bone marrow/spinal fluid). If either of them are not a match, they will look for an unrelated matched donor. There is a slim possibility that Dirk or I will match, but not as much as Julie and Christopher. If they do find an unrelated match, they will need to weigh the risks of transplant, which are many, with the risks of him relapsing and trying to get him into another remission, then doing the transplant anyway. They are concerned that Matthew has relapsed while receiving very aggressive chemotherapy. His protocol (treatment plan) was designed to prevent relapse in high risk patients, so this is not good that he has relapsed while on therapy. They have used more different types of chemo on him than usual to try to prevent a relapse. He has difficulty with some of them and they cannot be used in the high doses needed to destroy the leukemia cells. Some of them he has also reached the maximum dose they can safely give because they will cause damage to heart,kidneys, liver, etc.

They also drew blood on Matthew yesterday to check his counts to see if he is high enough for chemo. They were concerned that his WBC (white count) and ANC had dropped since a week ago, even though he has not been getting any chemo. This could just be that his bone marrow is tired from all the chemo and is having a hard time recovering. Anyway, they decided that since the testicle has gotten larger in the last week, that they needed to give the high dose Methotexate anyway. We were supposed to meet with the radiation oncology doctor yesterday, but they did not have time. Hopefully early next week we can meet with them. We did meet briefly with the Bone Marrow Transplant Coordinator, Yvonne. She wanted to introduce herself and to let us know that she was going to be watching for the HLA typing to come back next week. She will give us more information once we know what the plans are.

Matthew was in good spirits yesterday. He is normally pretty serious when he is down at the hospital, so I think the nurses were surprised. They have been having a good time taking care of him. He has already asked the doctors if he gets to pick the nurses who take care of him when/if he gets the Bone Marrow Transplant. He does have his favorites - so do I. I stayed down with him until about 9pm last night, Dirk came down last evening and spent the night with Matthew. I will spend the night tonight. They got the IV Methotrexate started about 3PM yesterday, so it will end at 3PM today. They will then give him a lot of IV fluid and encourage him to drink a lot so that he can flush the Methotrexate out of his system. They will check a Methotrexate level at 3PM Sunday, and if it has cleared enough, he can come home. IF not, they will increase his fluids and recheck levels every 6 hours until he clears the MTX (Methotrexate) and can come home.

Christopher will fly to New York today to spend the week as a service project with Washington University. They will work in shelters/soup kitchens during the day. They will have some free time during the evening. He did this last year and had a good time. He will get to be in "The Big Apple" on New Year's Eve and hopefully get to see "ground zero." What an experience.

Julie and Brad are still here. It am not sure if they plan to head back to Murray, Ky on Sunday or Monday. It has been a pleasure getting to know Brad better. He will be a wonderful addition to the family. It is so nice to have my kids all home. I miss them when they are away.

Debbie

Wednesday, December 26, 2001

I hope that everyone had a good Holdiay. Matthew was uncomfortable from the biopsy done on Saturday, but he was able to go to church Christmas Eve and visit family on Christmas. Monday, Dirk, Julie, Christopher, and I went down to the outpatient lab at Children's Hospital to have blood drawn for something called HLA typing. This will tell whether any of us are suitable matches for a bone marrow transplant for Matthew. The best chance for a match is Julie or Christopher. Each of them has a 25% chance of being a perfect match for Matthew. There is less of a chance for Dirk or I to be a match. The results of the biopsy weren't available yet on Monday, so Matthew's primary oncology doctor, Dr. Wilson, told Dirk, Matthew and I to come down today at 9:30 and he would have the results and talk to us about them.

There are definitely leukemia cells in the testes, so he has relapsed. The pathologist looked at the Bone Marrow and feels that there are <2% leukemia cells in the Bone Marrow and none in the spinal fluid, which is a good thing. They call this an isolated testicular relapse. The bad thing is that he has relapsed while he was receiving aggressive chemotherapy. Now we will wait to see if Julie or Christopher are a suitable donor match. If this is the case, they will definitely do a Bone Marrow Transplant. If neither of them are a match, and they can find a suitable unrelated donor, they will have to look at the pros and cons and determine what the next step will be. Matthew will receive testicular radiation and they will give him high doses of Methotrexate, one of the chemo drugs that he has received before. They feel that this chemo drug penetrates the testicles the most. He will go in the hospital on Friday to receive this chemo drug into the vein (IV) over 24 hours. Then they will wait for the levels to drop low enough and let him go home. He will probably be in the hospital until Monday. He will take the oral chemo (6MP) every night. In two weeks he will repeat the IV Methotrexate and he will continue the 6MP. By then they will know if Julie and/or Christopher are a match.

Both Julie and Christopher are home, which is nice. I always love to have them home. Brad, Julie's fiance, is also here. Saturday, Christopher will go to New York for a service project with school. They will work in the shelters/soup kitchens for a week. He went last year, and it was a good experience for him. Of course, the nights they are free to see the city. Julie and Brad will be here until Saturday, also.

Keep Matthew in your prayers, and please pray for Julie and/or Christopher to be a perfect match for a bone marrow transplant.

Sunday, December 23, 2001 at 01:23 PM (CST)

I have been putting off posting an update, hoping that I would have good news, but so far I haven't received any. They think that Matthew has relapsed and his leukemia is back. One of his testicles was enlarged, which is one of the places were the leukemia can reoccur. The reason is that the chemotherapy drugs have a hard time getting there and the leukemia cells are smart and hide out there. I took him down to the clinic on Friday and the doctors feel that this is what is happening. They wanted to see if there were any leukemia cells in his Bone Marrow and Spinal Fluid, so they did a Bone Marrow Biopsy and a Lumbar Puncture. They did find "blasts" in his Bone Marrow (12-15%) but they were reluctant to term this a "relapse". They consider anything over 5% a relapse, but this was close. They are waiting for the Pathologist to look at the Bone Marrow to get his opinion. I guess that "blasts" aren't necessarily leukemia cells.

Saturday (yesterday), we had to have Matthew down at the hospital at 6:30 am for a Testicular Biopsy. It went well, but we will not know the results as to whether it is leukemia until they get the pathology results, which will probably be tomorrow. He is in a lot of pain and is running a fever. The oncology doctor on call feels it is just from the surgery, so we will watch him and are to call if the fever gets higher, or Matthew feels worse. I am not very hopeful, because the surgeon feels that there is no other reason for the testicle to be enlarged in a 15-year-old boy. But, we will continue to pray for a miracle.

This is so hard to hear. Matthew is taking it very badly, as are the rest of us. He doesn't feel that he can go through this any more, but I hope that this is just his initial response. I know that he has been through so much already, but we don't have any other options. He has to fight. The rest of us (me, Dirk, Julie, Christopher) will go down to the hospital tomorrow for blood to be drawn for HLA typing, which will tell if any of us is a suitable donor for a Bone Marrow Transplant. If he has relapsed, they will probably get him into remission (which will be pretty intense chemotherapy again along with testicular radiation) and then do a Bone Marrow Transplant.

We are really struggling right now. Please keep us, and especially Matthew, in your prayers. Please pray for a miracle.

Monday, December 17, 2001

Hi,
Matthew headed down to the clinic today for more IV chemo. He was supposed to get these two chemo drugs, Cyclophosphamide and Vincristine, for the last two weeks, but his ANC has been too low. It needs to be at least 500 to get chemo. Two weeks ago it was 150 and last week is was 320. They decided to give him 5 days of Neupogen (a medicine to bring his white count up, resulting in a higher ANC) so that hopefully he would be high enough for chemo today. It worked. His ANC today was 1530. The only problem is that since he was delayed two weeks, he will be in the middle of the worst chemo during Christmas. Hopefully he will feel good enough to enjoy some of the festivities. He will go back to the clinic next Wednesday (Dec. 26) for more IV chemo. Then he will have 4 weeks of easier chemo of a shot of Methotrexate every Monday and a pill every night.

Christopher is home for Christmas/semester break. His last final was Friday and he came home Saturday. He will be home until December 28. Then he will go to New York City for a week for a service project through school. They will volunteer in soup kitchens/shelters for the week. He did this last year, but it was the week before Christmas. I guess he will be in "The Big Apple" for New Year's Eve.

Julie will be home Thursday afternoon. Friday morning she will fly down to Atlanta and drive up to Paducah, Kentucky to celebrate Christmas with Brad's family. They will drive up to St. Louis on Sunday and be here for Christmas.

Monday, November 26, 2001

Matthew went down to the clinic today for chemo. His counts were good enough - Hgb 14.1, Platelets 179, WBC 2.0, ANC 1520. He got IV Cyclophosphamide and ARA-C. He has had a bad week. Last week he started the second 8-week cycle with the Lumbar Puncture with the Methotrexate (chemo) in the spinal fluid, IV Vincristine, and IV Cyclophosphamide. He also took high doses of the steroid, dexamethasone, all week. He was miserable. He felt so bad for the Thanksgiving Holiday. I asked his doctor if we could delay this for a week, but they felt it was best to continue on schedule.
Poor Matthew spent most of the week either in bed or on the couch watching TV. He hurts really bad and is having bad muscle spasms in his back from the Vincristine. On Thanksgiving Day, I took Julie and Christopher and we went to my sister, Kim’s, house in Rolla to have Thanksgiving with my side of the family. Dirk stayed home with Matthew. Dirk’s Mom and Dad brought dinner over for Dirk and Matthew. Saturday I cooked Thanksgiving dinner for Dirk’s side of the family. Matthew came down and ate dinner with us, but it was difficult for him. Then he went back to bed.

The next two Monday’s, Matthew gets IV chemo down at the clinic, then he will have four easier weeks with a shot of Chemo every Monday and four weeks of an oral chemo pill every night. His tutor, Mr. Price, has been keeping Matthew pretty well caught up in school. He is very flexible. He comes a more often if Matthew feels good, and less often when he doesn’t. He is getting a B in all four major subjects - Geography, Geometry, English, and Science. We met with his teachers several weeks ago and they were all pleased with the work he is turning in.

Julie and Christopher were both home for Thanksgiving. Julie came home Tuesday night and Christopher came home Wednesday afternoon. It is always good to have them home. They both went back to school on Sunday evening after dinner. Julie got engaged to Brad in October. They are planning a September, 2002 wedding. We went wedding dress shopping on Friday. It was fun. Congratulations, Julie.

I hope everyone had a safe and wonderful Thanksgiving.

Sunday, October 07, 2001

I am really sorry it has taken me so long to update Matthew’s web page. Things are busy, as I know they are with everyone. We finally got a scanner, so I put some photos on the photo album page. They are not real recent, but I will try to update them soon. I just need to get out my camera and take some new pictures.

Matthew finished up the third phase of his chemotherapy protocol on September 14, after 2 weeks of delays because his counts weren’t high enough. On September 14, he had a Bone Marrow Aspiration to check to make sure he is still in remission - HE IS!!!!!!! The last two Bone Marrows he had were done in the Oncology Clinic under sedation with Versed and Fentanyl, which they give him for the Lumbar Punctures, also. He usually does not go to sleep and the Bone Marrow Aspirations are very painful, even though the meds make him forget it. This time, I requested that they have anesthesia sedate him. They took him down to the procedure center and put him totally asleep and did the Bone Marrow and Lumbar Puncture. It was so much easier for Matthew and he woke up fairly quickly after the procedure. The spinal fluid is also still clear, so this is very good news. He also had an echocardiogram to make sure that there was no damage to his heart from the chemo so far (there isn’t) and then he also got IV Chemo (Vincristine and Cyclophosphamide). It was a long day for him.

This last phase is 64 weeks long. The first four weeks of the 8-week cycle, he goes down to the Oncology Clinic and gets IV chemo. The last for weeks, I will give him the shot of Methotrexate (chemo) in his thigh each week, and he will take the 6MP (chemo) pills every night for 4 weeks. He will repeat this 8-week cycle for eight times.

He went down to the clinic last Monday, September 24, and received IV chemo (Cyclophosphamide and ARA-C). The ARA-C is the chemo drug that they think caused the problems with his intestines. They omitted the high doses of the last phase, but these doses are a lot lower, so they want him to get them. Hopefully, everything will go okay.

He was due for IV chemo on Monday, October 1, so I drew his blood on Sunday to see if he was high enough to go down on Monday. His Hgb. Was 12.7. White Count was 1.4 with an ANC of 518 (He needed to be above 500) and his Platelets were 81 (They need to be 75), so he was barely high enough. They didn’t redraw a CBC on Monday morning before giving him Chemo (IV Vincristine, Cyclophosphamide, and ARA-C) so he might have been too low. The next day, Tuesday, October 2, he felt bad all day and ran a low-grade fever (100.6). By 7 pm that night, his temp was 101.7, so we went down to the ER at Children’s. His temperature got up to 102.8 in the ER, so they drew blood cultures from his IV lines, started him on antibiotics and admitted him the hospital. He got to come home on Thursday evening. He doesn’t like to be in the hospital, so he was glad to be home. I will draw Matthew’s blood today and see if he is high enough for chemo tomorrow. He will get IV Cyclophosphamide.

Julie came home this weekend. She had a birthday on September 27 - she was 21. HAPPY BIRTHDAY, JULIE!!!!!!!! Christopher came home for dinner last night. It was good to have them all home. Next weekend, Dirk and I will go to Murray, Kentucky for Homecoming. We will finally get to meet Brad’s parents (do you think this is serious, or what?). Matthew’s Grandma and Grandpa Hallemeier will come to the house to stay with Matthew.

Sunday, September 09, 2001

Wow, it has been a long time since I updated this page. We finally got settled into our new house. We put the last box away this afternoon. Matthew is feeling pretty good except that his ANC is very low. He was due to have the Bone Marrow Aspiration, Echo, and LP with chemo tomorrow, but last week his ANC was only 26-almost down to 0. He hasn’t gotten to go to school yet because his counts have been so low. He was having a lot of abdominal pain last weekend (Labor Day) and Dirk took him down to the Emergency Room at Children’s. They did some x-rays and everything looked okay, so he came home. They think that with his counts being so low, the chemo he got is irritating his intestines more than usual. They rescheduled his next round of chemo (the start of the last phase) for this Friday. Hopefully, his counts will be high enough and he won’t be delayed again.

Christopher dislocated his shoulder last weekend (Labor Day Weekend) playing sand volleyball down at Wash U. He was taken to the emergency room and they sedated him to put it back in place. Dirk brought him home for the night, but Christopher was ready to get back to school on Monday. He saw an orthopedic surgeon last Thursday, and he will start physical therapy to strengthen the shoulder. The surgeon said that it is healing nicely.

Our new address is 2412 Shetland Drive
O'Fallon, MO 63366
(636) 978-3733

Tuesday, August 21, 2001

Matthew’s counts were good enough Monday for chemo, so I took him down to the clinic first thing in the morning. His counts were:
Hgb 12.7 (normal 13.8 – 17.2)
Platelets 130 (normal 140 – 440)
WBC 1.2 (normal 3.8 – 9.8)
ANC 756
In case anyone notices, the normals vary depending on the lab that runs them. These normals are from Children’s Hospital. Matthew got two IV chemo drugs (cyclophosphamide and VP-16). He felt pretty bad yesterday after we got home and has felt bad off and on today, but he seems to have tolerated these two drugs better this time than in the past. He is due for chemo again on September 3, but since it is Labor Day, we will delay it for a week. His counts probably won’t be good enough for chemo on the 3rd, anyway. On September 10, he will have another Bone Marrow Aspiration to make sure he is still in remission, an LP with the chemo in the spinal fluid, and two IV chemo drugs – Vincristine and Cyclophosphamide. He will also have an echocardiogram and EKG to make sure that there is no damage to his heart from the chemo he has received so far.

We closed on our new house today, and have been cleaning to get ready to move on Friday. Dirk and I met with Matthew’s counselor at the new school today. Matthew wasn’t feeling good enough to go, but we will meet with her again on Monday and take Matthew to meet her, work on a schedule, and get familiar with the school. I don’t know how much school Matthew will be able to attend this year. We will have to see how he tolerates the new chemo schedule. Hopefully he can get to school some this year. There is another student at Matthew’s new school who was diagnosed with leukemia last year, so they are a little familiar with working with a child with cancer. We will just have to “play it by ear” again this year as far as school is concerned. It definitely is a learning experience for everyone involved.

Monday, August 13, 2001

Hi, Everyone

Sorry it has taken me so long to update this page. We have had a lot going on around the Hallemeier house lately. The good thing is that Matthew has been doing well. He has had a few good weeks. On July 22, Matthew went to the oncology clinic for the first week of the last 6-week cycle of chemo in this phase. He had a lumbar puncture with the Methotrexate in the spinal fluid, the IV chemo drugs Daunomycin and Vincristine, and a week of dexamethasone (the steriod). He had two weeks after that when he felt bad, a lot of pain from the Vincristine.

I drew his blood today, and the counts were all good: Hemoglobin 12.9, Platelets 128, WBC 2.0 with an ANC of 1060. He will get the Methotrexate shot in his thigh and continue the oral chemo, 6MP, every night for this week. Monday, August 20, if his counts are good enough, he will go back to the clinic for IV chemo – Cyclophosphamide and VP-16. Then he will have one week of home chemo before he starts the last phase of this treatment plan. He will get another Bone Marrow Aspiration to make sure he is still in remission, and an echo to make sure he doesn’t have a heart damage from some of the chemo. Then he will start the first of eight 8-week cycles. He will get a lumbar puncture with chemo to his spinal fluid the first week and IV chemo the first four weeks (Mondays in the clinic). The last four weeks he will get chemo at home - the Methotrexate shots in his thigh and the oral 6MP at bedtime.

The following day, Aug 21, we close on our new house. We will be moving some boxes the rest of the week, and then the movers will move the big stuff on Friday. Julie will be home on Wed, Aug 22, to help pack/move. It is such a big job – I can’t believe how much “junk” we have accumulated in 22 years. Matthew usually doesn’t feel very good for several days following the chemo, so he will probably take it easy and leave the moving to us.

Dirk had to have his appendix removed a week ago Thursday (Aug 2). The surgery went well and he is feeling stronger every day. We all think that he planned it this way because he cannot lift anything heavier than a milk carton for 4 weeks. I think that he is lifting things heavier than that, but he cannot lift very much. I guess he will supervise the moving but won’t be able to do much heavy lifting.

Julie was home last weekend with Brad (her boyfriend from Atlanta). It was good to see him. Dirk put him to work doing “manual labor” for him.

Christopher has to have his wisdom teeth extracted tomorrow by an oral surgeon. He has an appointment at 8 am and will be sedated for the surgery. He cannot eat anything after midnight tonight since he will get general anesthesia. He will go back to Wash. U on Sunday. The doctor that he is doing the internship with down at the Barnes Bone Marrow Transplant Unit has offered to let Christopher work part time during the school year and he will be able to continue same job next summer. This is such a good experience for him. He is learning a lot and I think that it is giving him a better insight into what Matthew is going through with chemo, etc.

Hope everyone is having a good summer. Continue to keep Matthew in your prayers.

Thursday, July 19, 2001

Sorry it has taken so long for me to update Matt’s webpage. With summer here, things are busy, as I am sure they are for everyone. Matthew has been doing well. On July 2, Dirk took Matthew down to the clinic for IV chemo – Cyclophosphamide and VP-16. His counts were good:
Hemoglobin 11.6 (normal 14.0-18.0)
Platelets 156 (normal 150-450)
WBC 1.8 (normal 5.0-10.0)
ANC 1080
He did pretty well with the chemo and only really had one bad day on Tuesday. We had a good 4th of July with Grandma and Grandpa Hallemeier over for BBQ. The following Monday, July 9, his counts weren’t good enough for him to get the chemo.
Hemoglobin 10.6
Platelets 104
WBC 0.9
ANC 315
His ANC has to be at least 500 for him to be able to get chemo, so we skipped the shot of Methotrexate in his thigh and the oral chemo pills (6MP) every evening. He had a good week because he felt well. Thursday, July 12, he spent the whole day with Grandma and Grandpa. They had a good time.

This past Monday, July 16, he was due for the Lumbar Puncture with the chemo in the spinal fluid and IV Vincristine and Daunomycin. I drew his labs on Sunday night to see if they were high enough, and they were not:
Hemoglobin 12.2
Platelets 112
WBC 1.1
ANC 374
His ANC had not come up much in the week, even though he didn’t have any chemo. Matthew was anxious to get that day of chemo over with, so he had Dirk take him down to the clinic to see if they would give him the chemo anyway. When he got down to the clinic, they rechecked the ANC, and it still was not even 400, so they said no chemo. So, we are delayed another week. I guess this is good, because if the chemo is killing off the white cells, it is also killing leukemia cells. Even though he is susceptible to infection with his ANC so low, he has gone out several times and hasn’t gotten sick. He is feeling good this week. We actually all went out to eat at Red Lobster for dinner tonight.

Julie came home Saturday. She has been home all week. She will go back to Murray, Ky. for the weekend to see Brad. She will be home Sunday, then will be home until the following Friday, then will go back to Murray for the weekend for a wedding. She was offered a part time job during the school year at the Murray Tourism Commission. This is where she worked this summer. It will give her some extra money and will look good on her resume.

Christopher is in the second semester of Organic Chemistry. He got an A in the first semester. He is enjoying his job down at the adult Bone Marrow Clinic at Barnes. He is learning a lot of interesting information and is understanding a little more about what is going on with Matthew. It is interesting to hear him talk about the different chemo drugs, blood counts, etc.

Thursday, June 28, 2001

Matthew has had a really good week this week. I drew his blood Monday and his counts were all good
Hgb 13.0 (normal 14.0 – 18.0)
Platelets 144 (normal 150 – 450)
WBC 2.7 (normal 5.0 – 10.0)
ANC 1890
His liver tests that were high last week and prevented him from getting the chemo were down - ALT 142 (down from 986) and AST 40 (down from 295). Don’t know why this happened, but it is good news. His liver is definitely not damaged from the chemo or the counts would not come down like this. I gave him his shot of Methotrexate in his thigh and he has been taking oral 6MP every night. It is kind of a pain for him because the 6MP has to be taken on an empty stomach, so he can’t eat a snack at bedtime. The only thing going on this week (it seems like it is always something) is that he has some redness and drainage around the IV catheter in his chest. He is on an oral antibiotic for that and I am cleaning it daily. Hopefully it will clear up. The good thing is that his ANC is high enough to fight infection. I will check his blood Sunday night and if his counts are good enough, Dirk will take him down to Children’s on Monday for IV chemo – VP-16 and Cyclophosphamide.

Christopher took his Organic Chemistry Final today. He starts the second “semester” of the class Monday and will go for 6 more weeks. He had an 89.6% going into the final, which to me is great. To Christopher, he won’t be happy unless he gets “THE A.” His job doing research down at the Bone Marrow Unit (Adult) at Barnes is going well – although boring at times (according to Christopher). He certainly comes home with some interesting information. I think it helps him to understand some of what is going on with Matthew and his leukemia. I know it is probably easier to take in when it isn’t about someone you know and love.

Julie is still in Murray gearing up for the festival next week for July 4th celebration. She will be home the following weekend for the summer. She went to Chattanooga to see her Brad last weekend. He travels a lot for his job and was near there the week before.

Monday, June 18, 2001

I drew Matthew’s blood this morning to see if his counts were good enough for chemo. His blood counts were okay:
Hemoglobin 12.9 (norm 14.0 – 18.0)
Platelets 166 (norm 150 – 450)
WBC 2.3 (norm 5.0 – 10.0)
ANC 1426
Unfortunately, the lab tests that show how his liver is doing were very elevated which could indicate some liver damage. The one lab, ALT, was 986 (normal 0 – 45) and the other, AST, was 295 (normal 0 – 40). I got a call from the oncology doctor, and I am to not give Matthew any of his chemo this week. The elevated liver enzymes could be due to the chemo he is taking or it could be from the itraconazole (sporonox) he takes for the fungal infection in his nose. So, we will hold chemo this week and check his labs next Monday to see if the AST and ALT have come down. If it is not one thing, it is another.

The good news is that Matthew is finally feeling pretty good. He, Dirk, Christopher, and Grandpa went to the Cardinal baseball game tonight. Hopefully he will have two good weeks before he gets the IV chemo again. I hope everyone is having a good summer. Julie was home again this weekend for Fathers Day. She went back last night after dinner. Christopher started his job today. I didn’t get a chance to ask him much about it before they left for the ballgame. He is working for a doctor in the adult bone marrow unit at Barnes who is writing a research paper. I think Christopher is compiling information from patient charts. The experience will be good for him.

Wednesday, June 13, 2001

Hi, Everyone. Matthew’s counts Monday were good:

Hemoglobin 13.3 (normal 14.0 – 18.0)
Platelets 171 (normal 150-400)
White Count (WBC) 3.2 (normal 5.0 – 10.0)
ANC 2368 ( normal 1800 – 8000)

He got the shot of methotrexate in his leg and started the oral chemo pill (6MP) at bedtime every night. He is hurting pretty badly from the chemo and steroids last week. Hopefully he will start to feel better soon. He will repeat this week’s chemo for the next two weeks, so hopefully once he feels better he will have a week or two of feeling a little better.

Julie was home last week for Dirk’s birthday. She went back Sunday night and will come home again Friday for Father’s Day. Christopher is working hard in Organic Chemistry. He had an interview for an internship down at Barnes Hospital today and got the job!!! He will start Monday working afternoons Monday through Thursday and all day Friday. He will be working in the adult Bone Marrow Transplant office working with charts.

Saturday, June 09, 2001

Hi, sorry I haven’t posted to the website lately. Matthew went in to the clinic on Monday (June 4) for chemo. I drew his blood Sunday night to make sure his counts were good enough before taking him down Monday. His counts were:
Hemoglobin 12.7 (normal 13.0 – 18.0)
Platelets 98 (normal 130 – 400)
White Count (WBC) 1.3 ( normal 4.5 – 13.5)
ANC 624
He had the lumbar puncture with the Methotrexate in the spinal fluid and two IV Chemo drugs – Daunomycin (DNR) and Cyclophosphamide. We had an early appointment (8:30) so we were home by 1:00. Matthew has felt terrible all week. He also started the steroids (dexamethasone) twice a day, which probably make him feel worse than the chemo. The combination of the two is bad. He has been on the couch or in bed all week.

Today is Dirk’s birthday. We are going to Fratelli’s Restaurant in St. Charles for dinner. Matthew is going to try to go, if he feels better. I know it will be hard for him, but I admire him for making the effort. Julie came home from Murray, Kentucky for the weekend. She will go back Sunday night. Christopher is working hard in the Organic Chemistry class he is taking this summer. He got an A on the first test. Congratulations Christopher.

Monday, May 28, 2001

I hope everyone had a good Memorial Day Holiday. I drew Matthew’s labs today. He was supposed to get the shot of chemo (Methotrexate) in his leg and start the chemo pills at night, but his counts weren’t good enough. His counts were as follows with the Normal Values in parenthesis. Hemoglobin 11.7 (13.0 - 18.0), Platelets 75 (130 - 400), WBC 0.8 (4.5 - 13.0), ANC 128 (1800 - 8000). His ANC has to be 500 to get his chemo so it will be delayed a week (again!). Anything below 500 is considered neutropenic and he is very susceptible to infection. This is the lowest his ANC has dropped from the chemo he got last week. I think his bone marrow is getting tired and it is taking longer and longer to recover from the chemo. He feels pretty good; he just can’t be around a lot of people. It is very frustrating because if he continues to stay so low on his ANC, I don’t know how much school he will be able to attend next year. I figured out that he has been delayed a total of 12 weeks since he was diagnosed and started chemo. At this rate, we will be doing treatments for three years!!!!

Wednesday, May 23, 2001

Matthew’s counts were good enough Monday for him to get chemo. His WBC was 1.4 with an ANC of 560 (barely high enough – needs to be 500), his Hemoglobin was 12.5 and Platelets were 160. Dirk took him down to Children’s Oncology Clinic and he got two IV chemo drugs, VP-16 and Cyclophosphamide. He was down there most of the day because they give him lots of IV fluids with these drugs. Monday night, Tuesday and today he has not felt very well – achy like the flu, sick to his stomach, etc. – normal side effects of the drugs. Next week he will get the shot of Methotrexate in his leg and take the 6MP (oral chemo) for a week. Then he starts the 6-week cycle all over again with the Lumbar Puncture with chemo and the IV drugs that make him hurt so badly. He will follow this 6-week cycle two more times then he will start an 8-week cycle that he will repeat 8 times. Then, hopefully, he will be done (sometime in November 2002).

Julie was home last week. She went back to Murray, Kentucky for an internship. She will be there until the middle of July, then she will be home for a month until school starts again. She is going to Atlanta this weekend to visit Brad. His sister graduates from High School, so she will be there for graduation. Christopher is home for the summer. He is taking Organic Chemistry over the summer at UMSL. It will last most of the summer. It is a pretty difficult class, but he will be glad to get it out of the way over the summer.

Tuesday, May 15, 2001

Matthew went down to the clinic yesterday for chemo – unfortunately his counts were not high enough (again!). His WBC was 1.1 with an ANC of 451. He has to be 500 or higher for chemo. His platelets dropped, also, from 112 to 91. I don’t know why his counts are still dropping even though he has not had chemo for three weeks now. Since his ANC is below 500, he is “neutropenic” and more susceptible to infection, so he has to stay away from large groups of people, especially ones that are sick. They have most of the results of the biopsies and cultures that they did last week. Luckily, everything is negative so far – no infection or other cancer. The GI doctor called Monday afternoon and told us the good news, and since Matthew is doing a lot better, he will not do any more tests for now. He has an appointment next Monday at 8:30 am. I will probably check his blood Sunday night to save a trip to the clinic if his counts are not high enough.

Julie and Christopher are both home this week. I love having them home, but it takes a while to adjust to the change in routine. Their sleep schedule is different – up late and sleep late. It is good to have them here with Matthew during the day.

Sunday, May 13, 2001

Happy Mother's Day!!!! Matthew has been feeling pretty good the past few days - especially today. What a Mother's Day Gift. Julie came home late last night/this morning. She will be home a week, then will go back to Murray for an internship this summer. She will be home mid-July for a few weeks. Christopher should be home this evening. He will be home the rest of the summer.

Matthew has an appointment down at the Oncology Clinic tomorrow morning at 11:00. If they think he is doing well enough and his counts are high enough, he will get two IV chemo drugs (VP-16 and Cyclophosphamide). He was supposed to get them last Monday, but he ended up being admitted instead. We still have not gotten any results back from the biopsies that they took from his stomach on Thursday. Hopefully we will find out tomorrow. I am hoping that "no news is good news." I will probably draw Matthew's blood and take it to the hospital so that the results will be back before his appointment. That will speed thing up a little.

Have a Happy Mother's Day.

Thursday, May 10, 2001

Matthew got to come home from the hospital this evening. At about noon, they took him down for the upper endoscopy. They sedated him and passed a tube down his throat to look into his stomach. The doctor said that they saw a small ulcer and some redness that looked like irritation. They also saw the thickening at the bottom of his stomach that showed up on the CT scan. The doctor said that the opening to the intestine was small because of the thickened area. They took several biopsies and we won’t know what they show for several days. I am a nervous wreck. They could show that it is just a viral infection, or it could be something called CMV (cytomegalovirus), or a fungal infection. They also said there was a very slim chance that it could be something more serious.

He still doesn’t feel much like eating and the doctors said to start with liquids today and to go slow with advancing to solid food. I am to call with any change in how he is feeling and to call the clinic tomorrow to let them know how he is doing.

His counts are dropping, also. His ANC was down to 416, which is under the “magic number” of 500 when he is susceptible to infection. They don’t know why it is dropping since he had not had any chemo this week. They did say that sometimes a virus would cause the ANC to drop. They will recheck his labs on Monday when he goes down to the oncology clinic. The important thing is that he doesn’t start to run a fever. Keep him in your prayers. I will update when I know something.

Thursday, May 10, 2001

Matthew is still in the hospital. They have pretty well determined that he does not have an obstruction (blockage) in his intestines, which is good news. The surgeon delayed the test to see about reversing his ostomy, which did not make Matthew happy. The CT that they did in the Emergency Room on Saturday showed some thickening and possibly irritation in the bottom of his stomach. He is keeping some liquids and a few bites down, but is still having stomach pain – sometimes worse than others. They decided to have the GI (stomach) doctors come in to see him and after looking at the CT, they are going to take him down for an upper endoscopy today at noon. They will pass a tube down his throat and look in his stomach to see what is going on. They will also take some biopsies to check for infection, etc. I am a little nervous, but Matthew seems okay with it. They will sedate him so he probably won’t feel it. Hopefully if it is not serious, he can come home today after he wakes up from the sedation.

Christopher had a birthday Tuesday, so we took him out to eat down on The Hill. We had a nice time. HAPPY BIRTHDAY, CHRISTOPHER. It is hard to believe that he is 19. They are growing up so fast. He will be home Monday for the summer. Julie will be home Sunday.

Monday, May 07, 2001

Just got home to take a quick shower before I go back down to Children’s Hospital to stay with Matthew. He is still not keeping anything down and had very little out of his ostomy since Saturday night. He was supposed to go to the clinic for chemo today, but he felt so bad that they admitted him. Surgery came to see him late this afternoon and ordered an x-ray to see if there was a bowel obstruction. He had the x-ray late in the afternoon, so surgery probably won’t read it until the morning unless Matthew starts to feel a lot worse overnight. They did not do the chemo today and will probably wait until next Monday, if he is doing better. His WBC had dropped significantly since Saturday , down from 1.7 to 0.6 with and ANC of 518, so he doesn’t have a lot to fight infection. His Hemoblobin was fine at 12.7 and Platelets were fine at 126. The oral chemo he was taking last week usually doesn’t drop the WBC that much, so I don’t know if something else is going on. They will recheck his bloodwork tomorrow morning. When I left him to come home to shower and change, he was pretty comfortable and watching “The Mummy.” I will let you know what is going on tomorrow.

Monday, May 07, 2001

Just got home to take a quick shower before I go back down to Children’s Hospital to stay with Matthew. He is still not keeping anything down and had very little out of his ostomy since Saturday night. He was supposed to go to the clinic for chemo today, but he felt so bad that they admitted him. Surgery came to see him late this afternoon and ordered an x-ray to see if there was a bowel obstruction. He had the x-ray late in the afternoon, so surgery probably won’t read it until the morning unless Matthew starts to feel a lot worse overnight. They did not do the chemo today and will probably wait until next Monday, if he is doing better. His WBC had dropped significantly since Saturday , down from 1.7 to 0.6 with and ANC of 518, so he doesn’t have a lot to fight infection. His Hemoblobin was fine at 12.7 and Platelets were fine at 126. The oral chemo he was taking last week usually doesn’t drop the WBC that much, so I don’t know if something else is going on. They will recheck his bloodwork tomorrow morning. When I left him to come home to shower and change, he was pretty comfortable and watching “The Mummy.” I will let you know what is going on tomorrow.

Sunday, May 06, 2001

Well, this is not a good weekend for Matthew. Friday night he was complaining about not feeling well. He said that his stomach hurt really badly and that it hurt around into the back. He also felt sick to his stomach. When he woke up yesterday morning, he threw up and said that his stomach still hurt really badly. We called down to Children’s Hospital and talked to the oncology doctor on call, Dr. King, and she wanted us to bring him down to the Emergency Room since he has had so many problems with this stomach and intestines. They did a CT scan in the ER and said that it looked like he had some inflammation in his stomach and sent him home. They said to call if he felt worse or started running a fever. When he got home, he threw up all of the contrast he drank and did not feel like eating/drinking anything. This morning, he is still not feeling well. Still with stomach pain and nausea. He has an appointment down at the Oncology Clinic in the morning, so hopefully we will find out what is going on. Please say a prayer for him that he will feel better soon and that this is just a stomach virus.

Thursday, May 03, 2001

I can’t believe it has been so long since I posted anything. I hope that you weren’t afraid that no news was bad news. Matthew has actually had a pretty good two weeks. Last week his counts were good enough for the shot of Methotrexate in the leg and the oral chemo medicine. He had a few days last week when he didn’t feel very well, but for the most part he had a good week.

Monday (4/30) I took his blood and his ANC was down to 864 (WBC 1.6) which is pretty low. His hemoglobin (12.9) and platelets (130) were high enough, so he received the shot of Methotrexate in his leg again and the oral chemo pills at bedtime. Monday will be a day at the clinic at Children’s. He will get the IV chemo drugs, Cyclophosphamide and VP-16. They usually make him feel pretty sick for a day or so, but not too bad. Tuesday he has an appointment in radiology to check out his abdomen and then will see the surgeon about reversing the illeostomy. He has been looking forward to this for so long, but I worry about how disappointed he will be if the surgeon wants to give his bowel more time to heal before doing surgery. The prednisone that he takes for a week every 6 weeks can delay healing, so they will have to schedule surgery around that week.

Julie and Christopher both have finals next week. Then they will both be home for a while. Christopher applied for several internships for the summer, but they were awarded to upperclassmen, so he will try to find a job around St. Louis this summer. Julie will hopefully work in Murray, Kentucky until the first week in July, then will be home for several weeks.

Tuesday, April 17, 2001

Hope everyone had a good Easter. Julie and Christopher were both home for the weekend. We did some shopping on Saturday and then Dirk, Julie, Christopher and I went to church on Sunday. Matthew did not have a good weekend. He was in pretty much pain and did not feel very well. He spent most of the weekend on the couch. This is so hard-I HATE cancer.

I drew Matthew’s blood yesterday and his counts were pretty good. His Hemoglobin was 14.3, Platelets 144 and WBC 2.3 with an ANC of 2700. He got a shot of chemo in his leg and will start the oral chemo pills every night. He is so happy to be done with the steroids he was on last week. They made him feel so bad. He wanted to skip the last day of the steroids, but I explained to him that this was not an option. If he wants to beat this cancer he has to take all of the medicine. This is the first time he has wanted to skip some of the chemo. I know he is getting tired of all this, but skipping doses is not an option.

On a good note, the blood cultures they drew out of his central line in the Emergency Room Thursday were negative. That means no bacteria in the blood/line.

Tuesday, April 17, 2001

Hope everyone had a good Easter. Julie and Christopher were both home for the weekend. We did some shopping on Saturday and then Dirk, Julie, Christopher and I went to church on Sunday. Matthew did not have a good weekend. He was in pretty much pain and did not feel very well. He spent most of the weekend on the couch. This is so hard-I HATE cancer.

I drew Matthew’s blood yesterday and his counts were pretty good. His Hemoglobin was 14.3, Platelets 144 and WBC 2.3 with an ANC of 2700. He got a shot of chemo in his leg and will start the oral chemo pills every night. He is so happy to be done with the steroids he was on last week. They made him feel so bad. He wanted to skip the last day of the steroids, but I explained to him that this was not an option. If he wants to beat this cancer he has to take all of the medicine. This is the first time he has wanted to skip some of the chemo. I know he is getting tired of all this, but skipping doses is not an option.

On a good note, the blood cultures they drew out of his central line in the Emergency Room Thursday were negative. That means no bacteria in the blood/line.

Friday, April 13, 2001

Matthew has had a very rough week. He continues to have a lot of pain from the Lumbar Puncture and Chemo he got on Monday. He hurts so badly. He has been taking the Morphine for pain, but it is not helping much. Yesterday, Matthew had such pain and pressure in his head and neck that I called the doctor at the clinic at Children’s and he said that it could be a “spinal headache” from the Lumbar Puncture on Monday. By late afternoon, Matthew could not keep his eyes open. He would sit at the computer and just stare at the screen and his eyes would just close. I was worried because he has never been like this. I called the Doctor and they told me to bring him down to the Hospital. They felt that he could possibly have meningitis and that it could not wait until the morning

We got down to the Emergency Room at about 7:30 last night and they got us right in. They usually do that with the cancer kids because they can get all kinds of infections from the kids waiting. They got us right in a room, and the oncology doctor on call came down and did another Lumbar Puncture on Matthew. He waited around to do it himself because he said that the other doctors at the hospital don’t understand how important it is to sedate these kids for the painful procedures – especially if they get them a lot. After the Lumbar Puncture, Matthew was asleep, so they let him stay until the sedation wore off. They gave him an antibiotic in his central line just in case it was meningitis. The doctor stayed around until the lab looked at the spinal fluid and said everything looked normal. No white cells or leukemia cells in the spinal fluid. We got home at about 1:00 am. Matthew, of course, was exhausted and still sleepy from the sedation, so he slept very well. Today, he is starting to hurt from the vincristine. Hopefully it won’t last very many days.

Julie is coming home tonight and Christopher will come home tomorrow afternoon. I hope everyone has a good Easter.

Wednesday, April 11, 2001

Matthew is really having a hard time from the chemo he got on Monday. He hurts really badly – especially his upper back, neck and head. I think it is something called aseptic meningitis, which is caused by the lining of the spinal column/brain (meninges) being irritated by the chemo (Methotrexate) he received. He has never had this before. He usually starts to feel the pain about 5 days after the Vincristine, but this is different. It is so hard to watch Matthew suffer. He just lies on the couch and won’t move because it hurts so badly. There is nothing I can do to make him feel better (sigh). I feel so helpless. It is not fair that he has to suffer so much. Please say a few extra prayers for him.

Monday, April 09, 2001

Matthew went down the Children’s Hospital Oncology Clinic today for his lumbar puncture with Methotrexate in the spinal fluid and the IV chemos (Vincristine and Daunamycin). His counts were good – Hemoglobin higher than ever at 14.2. This is actually in the “Normal” range. Platelets were 144 and his WBC was low at 1.8 but his ANC was high enough for chemo at 1026 (it needed to be at least 500). They sedated him for the lumbar puncture, as usual, and then gave him the IV chemo drugs while he was still asleep. He doesn’t remember much of the day, which is good. He is having a lot of “electrical type” pain in his back, mainly between the shoulders. I think this is because the Methotrexate they injected into the spinal fluid is irritating to the tissues in the spinal column and around the brain. I think he has been lucky not to have had this type of pain before, because I think it is fairly common. Needless to say, he is not feeling very well tonight. He also will start the high doses of steroids for a week, which make him have trouble concentrating, sleeping, facial flushing and irritable – but they do make him very hungry.

We had a very good weekend in Murray, Kentucky, visiting Julie for the Miss MSU Scholarship Pageant. She did not win, but she was the prettiest girl in the pageant. We were proud of her for placing in the top 15. Her boyfriend, Brad, was there from Atlanta in addition to all her grandparents and one of her cousins, Sam. Sunday, we all went to the lodge at Barkley Lake for a buffet and then walked down by the lake. It was such a beautiful day and Matthew felt good. I think it did him good to get away from home for a few days.

Julie and Christopher will be home this weekend for Easter. I hope Matthew will feel well enough to enjoy Easter, but if this round of chemo effects him like it usually does, he will be hurting and feeling pretty bad this weekend. Please remember him in your thoughts and prayers.

Friday, April 06, 2001

Matthew had a pretty good week. I don't know what his counts are, but except for a few occasions of being sick to his stomach, he feels pretty good. We will leave tomorrow morning to go the Murray, Kentucky, to see Julie in the Miss MSU competition. It will be fun and good to get away. Matthew's Grandma and Grampa Hallemeier and Grandmother Fackler will go, too. I will probably check Matthew's counts Sunday night to make sure that they are high enough for chemo on Monday.

Monday, April 02, 2001

Today was blood draw day. I drew Matthew’s blood this morning and took it to the lab. I was certainly surprised when I got the results – He is very neutropenic. His WBC (White Count) was only 0.8 with and ANC of 134. He is very susceptible to infection at this time. His Hemoglobin was good at 11.5 and his Platelets were 122 (low but not bad). He was supposed to get a really strong Chemo with the Lumbar Puncture today, but we delayed it a week because we will be going to Kentucky to visit Julie on Saturday, and if he got the chemo, he would be feeling terrible this weekend. Anyway, it is a good thing we delayed it a week because his counts wouldn’t have been high enough for chemo. Hopefully this week will give his counts a chance to recover.


I am a little concerned, though. Matthew has not felt well all day. He has spent the whole day on the couch. So far he hasn’t started to run a temp, thank goodness, but he just feels terrible. Hopefully it is just a viral thing, but with his ANC so low, we have to worry about a bacterial infection.

Saturday, March 31, 2001

It is hard to believe that it was a year ago today that we found out that Matthew had leukemia. On one hand it seems like just yesterday that he was diagnosed. I can still remember taking his lab results off of the printer at work and knowing that something was terribly wrong. I remember that Matthew was home on spring break, just like this week. I remember knowing that he probably had leukemia and having to find a way to tell him that we had to take him down to Children's Hospital, without worrying him. It is all still so fresh in my mind.

On the other hand, it seems like we have been fighting his leukemia forever. It is hard to remember what life was like BC (Before Cancer). Things that we worried about before seem so trivial. I dream of the day when Matthew can have his life back and live like a "normal kid." Even though Matthew had been in treatment for one year, he still has a long way to go. I don't think most people realize that treatment for childhood leukemia lasts for so long. Matthews treatment schedule is 126 weeks long - that is over 2 1/2 years!!! I figured out that barring any more delays in his therapy, he will get his last dose of chemo on November 4, 2002.

I belong to an online pediatric cancer support group. I have “met” so many supportive parents of children from all over the world who are fighting many different types of childhood cancers. Each week I rejoice with the parents whose children finish treatment, worry with the parents whose children relapse and their cancer comes back, and grieve with the parents whose children loose the battle. Many of them have websites that are listed in the links at the bottom of Matthew’s web page. Please give your children extra hugs and kisses. Every single day with our children really is a gift. Life truly is precious.

Tuesday, March 27, 2001

I can’t believe that it has been almost a week since I updated Matthew’s web page. He had several hard days after his chemo last week, but is doing better now. He woke up Sunday throwing up and felt bad most of the day, but by Monday was doing better. I don’t know if it was related to the chemo, or what. He has been having a real hard time falling asleep lately. Some nights it is 3 or 4 am before he falls asleep. It is very frustrating to him, because he doesn’t feel good and just wants to go to sleep, but he can’t. The doctor gave him something to help him last week, but it hasn’t done much good.

I drew his blood Monday. His counts were good enough for the chemo – Hemoglobin was 11.9, Platelets were 114 and WBC was 1.4, which is pretty low. His ANC (which shows how well he can fight infection) is dropping and was 810. (500 or below is a risk of infection). This is from the chemo he received last Monday. Today I gave him the Methotrexate shot in his thigh and he will take the oral 6MP every night for a week. He was supposed to go to the clinic next Monday for the Lumbar Puncture with the Methotrexate in the spinal fluid and the IV chemo drugs, but they are the ones that make him hurt so bad and have trouble walking. This usually hits him by Friday. We are planning to go to Murray State University on Saturday to visit Julie and since he would feel too bad to go, the doctor is going to let us delay his chemo for a week. This will also give his counts a chance to come up before the hard chemo.

Julie is in the Miss MSU (Murray State University) pageant next weekend (4/7). She will compete against 14 other girls for a scholarship. I am really excited for her and looking forward to going to Murray. Her Grandmother and Grandma and Grandpa will also go to see her. GOOD LUCK, JULIE.

Thursday is Matthew’s Birthday. It is hard to believe that my “baby” will be 15. He is looking forward to taking his written driving test to get his permit. Hopefully, he will feel pretty good. He felt better today and actually went outside and rode his bike around a little while. He looked good with some color in his cheeks and his freckles starting to peek out.

Monday, March 19, 2001

Matthew went down to the clinic today for chemo. His counts were good - Hemoglobin 13.4, Platelets 193, WBC 2.2 and ANC 1408. The WBC/ANC are a little low, but high enough for chemo. Monday used to be a slow day at the clinic, which was nice. Now they added a second doctor seeing patients, and it is really busy. We were down there all day, from 9am to 5pm. There were so many crying/screaming babies that they finally gave Matthew an isolation room. They do that for the teens so they don't have to be with all the little kids. It took a long time to get the results of his blood work and a long time to get his chemo started. They gave him premeds for nausea and a lot of fluids before and after the chemo. He received two chemo drugs - VP-16 and Cyclophosphamide. They both make him feel pretty sick. Tonight he is aching like he has the flu and sick to his stomach.

Christopher went back to Wash U last night and Julie will be home until Thursday. Then she will go to Atlanta to see Brad (her boyfriend) for a few days before going back to college Sunday.

Wednesday, March 14, 2001 at 09:49 PM (CST)

Matthew's blood counts were pretty good Monday, so I gave him a shot of chemo in his leg and he will take the pills of chemo every night. Monday, he will go back to the oncology clinic at Children's Hospital for two different IV chemo drugs - VP-16 and Cyclophosphamide. Both of these usually make him sick for a few days. It will probably be a day long visit, but at least he can come home after it is over. His face is puffy because of the steroids he has been on and this really bothers him. His appetite has been really good, though, because of the steroids. His brother, Christopher, is home from school this week for spring break. Julie, his sister, will come home Friday for spring break.

Wednesday, March 07, 2001 at 08:48 PM (CST)

Matthew’s counts were good on Monday, so he got a shot of chemo in his leg (Methotrexate) and will continue the oral chemo every night at bedtime (6MP). His Hemoglobin (HGB) was 10.8, which is almost the highest it has been since diagnosis. His Platelets were normal at 187. His White Blood Cell count (WBC) was low at 2.9 with an ANC of 1972. For those of you who are interested, the ANC (Absolute Neutrophil Count) is an indication of the body’s ability to fight infection. The neutrophils are the White Blood Cells that fight bacterial and viral infection. Normally the ANC is above 1500. If the ANC is between 500 and 1000, there is some risk of developing a serious infection. If the ANC is below 500, there is a significant risk of developing an infection. This is called Neutropenia. If the neutropenia lasts more than 4 or 5 days, the risk of infection increases. Some chemo drugs cause the ANC to drop more than others. The ones Matthew is on now can cause some neutropenia. I start to worry when his counts get high, because the reasoning is that if the chemo drugs are working on the bone marrow causing his counts to be low, then it is also working on the leukemia cells. The doctors will sometimes increase the prescribed dose of chemo if the counts (especially WBC) don't drop low enough and will decrease the dose if it stays too low.

Matthew is finally getting over the severe pain from the Vincristine he received several weeks ago. He is still very tired and his legs still ache a little, but nothing like last week. Hopefully the rest of the week will be good. His brother, Christopher, who is a freshman at Washington University, will be home this weekend and next week for spring break. His sister, Julie, who is a junior at Murray State University in Kentucky, will be home the following week for spring break. It will be good to have them home. I like to have my children at home.

Sunday, March 04, 2001 at 07:58 PM (CST)

Matthew is finally starting to feel better. This is the first day that he has not been taking the pain medicine throughout the day. Tomorrow I will draw his blood and if his counts are okay, I will do his chemo at home. He will get a shot of chemo in his thigh and will continue on the oral chemo pills (6MP). Hopefully, he will have a better week.

We finally finished the IV Antibiotics for the infection in his central line on Friday. They will wait about a week to ten days, then recheck to make sure the infection is gone. It is good that we don't have to wake him late at night or early in the morning to do the antibiotics.

Wednesday, February 28, 2001 at 02:50 PM (CST)

Not much new to tell you about Matthew. He is feeling a little better today. Still hurting, but not as severe.

This is a song that was written by a contemporary Christian performer named Mark Schultz. It was written for a friend of his whose 14-year-old son was diagnosed with leukemia. It was written to try to capture the pleading heart of the father dealing with his son's illness. The boy is finished with chemotherapy and is doing fine.

He's My Son

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Chorus:
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is you
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Chorus

Can you hear me?
Can you see him?
Please don't leave him
He's my son

Tuesday, February 27, 2001 at 09:43 PM (CST)

The last two days have been very hard on Matthew. The Chemo he got last week (Vincristine) is causing extreme pain in his joints, especially his knees, ankles and wrists. He describes it as an "electrical-like pain". It is so bad that he has a hard time walking and getting up from sitting/laying because he uses his hands and wrists to push himself up and his knees to get up. It is so hard to see him in so much pain and not be able to do anything to help ease the pain. His oncology doctor is wondering whether Matthew will be able to tolerate any more Vincristine, which is scarry, because it is such a large part of the therapy. I worry that he will relapse and the leukemia will come back. Each night when he goes to bed, I pray that in the morning he will wake up and the pain will be better or gone.

Sunday, February 25, 2001 at 09:21 PM (CST)

Matthew got to come home early this morning. When Dirk got down to the hospital to pick him up, they told him that the blood culture that they drew in the ER yesterday was growing some bacteria. They think it was just contaminated when it was drawn, but to make sure, they drew another this morning before he came home. They should know tomorrow if it is positive. If it is, then instead of stopping his antibiotics tomorrow, we will probably have to continue for 7 - 10 more days. Hopefully, it will be clear.

Matthew has been in a lot of pain at home today. He has just laid on the couch. He says that the pain is not as bad in his back, but that his legs hurt. This is common with the vincristine, because it affects the nerves, especially those that go to the hands and legs/feet. I will draw his blood tomorrow to see if his counts are good enough for chemo. If they are, he will get a shot in his leg and will take chemo in pill form for 1 week. Hopefully it will be an easier week.

His appetite has been great this week. The steroids he was on this week caused him to be hungry all the time. I always feel better when he eats well.

Saturday, February 24, 2001

It is late and I just got home from Children's Hospital. Matthew woke up early this morning (4:30) complaining about severe back pain and chest/abdominal pain. He has been complaining about the back pain for a day or so, but this was really bad. We gave him some Morphine, but by 5:00 it had not helped at all, so we gave him a second dose. It still did not help. He hurt so bad he couldn't sit or lie down. He would get some relief standing under the warm shower, but that did not last long. He described it as all of the muscles tightening up. The more they tightened up, the more he hurt, and as a result, he tightened up more. I finally called the Oncology Doctor on call and given Matthew's history with bowel problems, they wanted him to come to the ER for evaluation. It was a very painful ride down to the hospital for Matthew having to try to sit with a seat belt on.

They checked some blood, gave him some IV Morphine, and did an x-ray of his abdomen. The x-ray was fine, but they wanted to admit him to try to get his pain under control. Matthew was NOT happy about this. He doesn't like being in the hospital. When they got the pain controlled this afternoon, he wanted to come home, but the Doctors want to make sure he is comfortable overnight. They think the pain was from the Vincristine he received Monday. I think if we would have started the Morphine when the pain first started and kept it up regularly around the clock, things would not have gotten so bad. Hopefully he can come home tomorrow. He wants us to come down early in the morning (8:00 at the latest) to bring him home.

Friday, February 23, 2001

Matthew has had a pretty rough week. The Vincristine is causing him to have a lot of pain in his back and chest area. He says the pain is so bad sometimes that it hurts to breathe. He takes Morphine for the pain, but it doesn't take it away completely. He is also on high dose steroids which make him feel "out of it" and have a hard time concentrating. They also make his face puffy and flushed.

He was so excited to have hair. It was red before he started the chemo, but then he lost it all. He finally started to get it back in January and it came in blonde with a slight red tint. Now it is starting to come out again! Hopefully, he won't loose it all this time, but he is not happy about it.

We have three more days of IV antibiotics to do. It is tiring to have to stay up until midnight to do a dose, only to have to get up at 5 am to do the next dose. I know Matthew will be glad to not have to be awakened at these hours.

Monday, February 19, 2001 at 09:59 PM (CST)

Matthew went down to the oncology clinic for his regularly scheduled chemo. They were a little surprised when he walked in the door. Since he was just admitted to the hospital Friday afternoon from the clinic, they didn't think he would be home already. But, he was feeling pretty good and his counts were high enough, so they went ahead with the chemo.

After they got him hooked up to fluids and gave him some medicine for nausea, they gave him medicine to sedate him for the lumbar puncture. He talked all the way through the procedure, then fell asleep. When they were done with the Lumbar Puncture, they injected a chemo drug into his spinal fluid. He was comfortable and didn't remember it. While he was asleep, they gave him two different IV chemo drugs, Vincristine and Daunamycin. The Vincristine is the one he had a hard time with last time. It can cause some severe nervous system side effects, like numbness and tingling in the hands and feet, foot drop, problems with grasp, and can cause the intestines to become paralyzed (ileus). He had severe pain and ileus last time he got it, and they figured out that it reacted with the Sporonox he takes for the fungal infection in his nose causing the side effects to be worse. This time we stopped the Sporonox 5 days before and 5 days after the Vincristine, and also decreased the dose of Vincristine. Hopefully, he won't have as bad of side effects this time. So far he is just "wiped out" from the day.

Sunday, February 18, 2001

Well, I drew Matthew's blood tonight and ran it up to the hospital. I just called for the results and his counts are okay for chemo tomorrow. His ANC is 1060!!! and Platelets are 93. Hemoglobin is 10.4. He will not be able to eat or drink anything after midnight tonight because they will sedate him for the Lumbar Puncture tomorrow. After the Lumbar Puncture, they will inject Methotrexate into the spinal fluid. Then, while he is still sleepy, they will give the two IV chemo drugs, Vincristine and Daunamycin. They will give him a decreased dose of the Vincristine this time since he had such a bad reaction to it last time. The oncology clinic is really busy on Mondays, so it will probably be a day-long visit. Our appointment is at 10 am.

Matthew felt pretty good today. It is hard for him to go anywhere because he is hooked up to the IV for his TPN. Hopefully we can get this changed tomorrow so he is just hooked up over night. That leaves him free during the day.

Saturday, February 17, 2001

Welcome to Matthew's page. I wanted to fill in the past journal entries before I started posting the current dates because otherwise they would be all out of order. The past journal entries read as a patient chart, as my friend, Angela, says. I know there were a lot of emotions that I have felt since he was diagnosed, but it was too hard to remember those past feelings and write them down. From here on, the entries will be current.

Matthew got to come home from the hospital today. They got the identification of the bacteria growing in his central line and it is sensitive to the Vancomycin. Therefore, he came home on Vancomycin every 8 hours for 10 days. He is also on TPN. The doctor on duty didn't realize that Matthew normally just does the TPN over night, and since Matthew got it over 24 hours in the hospital, that is what he ordered. Hopefully I can get it changed on Monday when Matthew goes down to the clinic for chemo. That is if his counts are good enough. Today, his ANC was only 407 and his platelets were only 61. Not high enough for chemo. I will draw his blood tomorrow night and take it up to the hospital to be run. That way I will know if his counts are good enough before making the trip to the clinic Monday. If they aren't, his chemo will be delayed a week.

Friday, February 16, 2001

This morning the oncology clinic called and said that one of the blood cultures they drew from Matthew's central line was growing a staph bacteria, so we had to go down to the clinic to be admitted for IV antibiotics. Matthew was not happy. We tried to talk them into letting me do them at home, but they wanted to admit him until they found out what type of staph bacteria it was. So they started him on an vancomycin again. He has had it before, and it causes itching, so the gets IV Benadryl before the vancomycin. Well, when they were giving him the first dose in the clinic, he broke out in a red rash all over his face, neck, chest, and back. They gave him more benadryl, and slowed the vancomycin down to go in over 2 hours instead of one. He did okay with this. He finally got at room on 9 West at about 4 pm.

His sister, Julie, came home from college in Murray, Kentucky this afternoon. She and Dirk came down and we ate in the cafeteria at the hospital

Thursday, February 15, 2001

When Matthew woke up this morning, he felt terrible. He asked if Dirk could stay home with him because he felt so bad. I drew his blood and dropped it at the hospital lab on my way to work. The lab called me with a critically low CO2 level of 5 (normally 24-32). When I called the oncology clinic with the results, they had Dirk take Matthew down there. When he got down to the clinic, they redrew his blood and started him on IV fluids. When the lab results came back, his CO2 was normal – The hospital lab had made an error!!!. Matthew’s other labs were all okay, so since he was complaining about being short of breath and vomiting, and generally feeling bad, they drew blood out of both lines of his catheter in his chest for blood cultures (It is so nice that he doesn’t have to be stuck) and sent him down for a chest x-ray and x-ray of his abdomen. Both x-rays were fine, so he came home. His ANC is low at 456, so he is susceptible to infection.

Wednesday, February 14, 2001

Matthew woke up this morning feeling terrible. He has been throwing up all day and just ached all over. I think he may have the flu. He normally doesn’t feel this badly from the chemo he got on Monday. Luckily he is still on TPN, so he is getting nutrition and fluids. I will draw his blood tomorrow to see how his counts are doing. He is complaining about feeling short of breath and having trouble breathing, so I wonder if his Hemoblobin is low.

Tuesday, February 13, 2001

Matthew had a good day today. He actually felt like going out to a fast food restaurant for dinner. Once he got there he started feeling nauseated from the food smells, but at least he got out of the house. His Algebra tutor, Ms. Lammert, came over to work on Algebra with him in the evening. I felt better than I think he has felt in a long time.

Monday, February 12, 2001

Matthew’s counts were okay for chemo today. The chemo he gets is given as a shot into his muscle. Since he has had it before and did okay with it, I gave it at home. He will also start on a pill form of chemo(6MP) and take it every night for a week. It has to be taken at bedtime on an empty stomach, so he ususlly wakes up feeling nauseated. Luckily it is only for a week. He is feeling pretty good, otherwise.

Monday, February 5, 2001

Matthew went to the clinic today for his regularly scheduled chemotherapy. He got the VP-16 and Cyclophosphamide through the vein. They normally cause pretty much nausea, so he came home with IV fluids to help keep him hydrated, in addition to the TPN over night. Dirk took him to the clinic and was there all day. While he was down there, they had the surgeons see him so he won’t have to go to their office tomorrow as planned. The surgeons say everything is going well after the surgery. He is still having quite a bit of abdominal pain, but it is getting better every day.

Tuesday, January 30, 2001

Matthew got to come home today!!! He is still in pretty much pain, so he is taking oral pain medicine. Since he is not eating very well since surgery, he is on TPN over 12 hours at night, again. Hopefully, this well help with healing. It’s good to have him home. I feel that my van could make the trip to the hospital on autopilot.

Monday, January 29, 2001

Matthew had not had a fever for 24 hours, so they stopped all his antibiotics. If he stays fever free for 24 hours, he can probably go home tomorrow. His ANC is up to 5220!

Saturday, January 27, 2001

Matthew’s Hemoglobin was down to 7.6 today, so he got 2 units of PRBC (#28, #29). His ANC is starting to come up – 115. Maybe he can go home soon. He only ran a slight fever today, but they are continuing his antibiotics until he is fever free for 24 hours.

Friday, January 26, 2001

Matthew is still running fevers. They took him down for another CAT scan to make sure there was nothing going on in his stomach from the surgery that would cause an infection/fever. They saw something unusual on the CAT scan so they took him across the hall to ultrasound to have a better look. AT first they though he had a bowel obstruction, but they determined that the ostomy opening was tight and not allowing much to move through. They decided to stretch the opening several times a day over the weekend, to see if they could enlarge it. This was pretty painful for Matthew. It is so hard to see him have to endure so much pain. He is getting pretty frustrated with everything that is happening to him. His ANC is still 0, so he is susceptible to infection.

Thursday, January 25, 2001

Matthew’s ANC was 0 today. His Hemoglobin was down to 8.6 and his platelets were 40. They went ahead and gave him another unit of platelets (#26) because of the surgery. They arranged for physical therapy to come to the room to work with him on some stretching exercises and to get him up walking more. Of course he had to wear a mask when he was out of the room. Matthew is still having quite a lot of pain in his stomach. He is still on the IV Morphine. When he hurts so much, it makes it hard for him to get up out of bed and move around, but it is important for him to get up and moving so he doesn't develop pneumonia.

Wednesday, January 24, 2001

Matthew’s ANC is down to 135 and his platelets are 16. They normally would wait to give him platelets until he got down to 10, but since he just had surgery, they don’t want to take any chance with bleeding, so he got 1 unit Platelets (#25). His hemoglobin was 9.8. He ran a fever again last night, so they drew more blood cultures from his central line.

Tuesday, January 23, 2001

Today they took the tube (NG) out of Matthew’s nose. It certainly made him feel better to get it out. He can start eating some liquid foods. His blood counts are starting to drop from the chemo. His Hemoglobin in 11.0, his Platelets are down to 31, and his ANC is 740. He has started to run fevers, but they don’t know why. He was up to 102 last night, so they drew blood out of both lumens of his central line to check for an infection in the blood.

Friday, January 19, 2001

Matthew is on 4 different antibiotics to cover any bacteria that could have leaked from his intestines from the perforation and also the surgery. They also started him on TPN again to give him some nutrition because he couldn’t eat. This would help with healing. His labs were pretty good, Hemoglobin 12.0, Platelets 125 and ANC 9888. Since they are expecting his counts to start dropping, they started him on double dose of Neupogen to try to keep his ANC up to fight infection.

Thursday, January 18, 2001

They finally were able to do the CT scan at 7:30 am. While they were doing the scan, I looked over in the room where they were looking at the films, and they kept getting on the phone calling more people to come look at the films. The surgery dept. was there. When we were done with the scan, they sent us back to the ER and told us the surgeon would come in to see us.

We waited, and after about ½ hour, Matthew said, “I just know something is wrong, or they would have been here by now.” Then the surgeon, Dr. Mason, came in and said that Matthew had a bowel perforation, and that he had to go to surgery right away. I told them that I wished Dr. Minkes was on duty since he did the original surgery, but they said he was at another hospital. They took Matthew down to the surgery holding area, and I looked up, and saw Dr. Minkes!!!. Someone had called him about Matthew, and he came over to do the surgery.

Dirk and I called our parents. My mom wasn’t home, and Dirk’s mom was at a doctor’s appointment herself. While we were in the surgery waiting room, Pastor Arle from our church came down and sat with us and also Chris McDowell, Chad’s mom. Chad was still up on 9 west getting chemo. They surgery took about 1 ½ hours, then Dr. Minkes came out to talk to us. They said the surgery went well and that Matthew had a small area where they reconnected the bowel in September that had not healed and had broken through. They fixed that area, and since they weren’t sure why that area had not healed, they decided it was best for Matthew to give him an temporary illeostomy to bypass the bowel so it could heal. It would have to stay at least 3 months, then they would go in and look to see that the area had healed properly before they reversed the ostomy.

Matthew was in the recovery room for about 2 hours, then they moved him up to the oncology floor, 9 west. They debated about sending him to the surgery floor, but since his ANC would be dropping because of the ARA-C, they put him on his regular floor. This was good, because we know most of the nurses up there, and they know Matthew. He was on a morphine PCA, so he could give himself morphine when he was hurting, and he had another tube down his nose into his stomach to keep him from getting nauseated from fluid accumulating in his stomach.

Wednesday, January 17, 2001

Dirk went and picked up Matthew from the hospital this morning. They got home at about 11:00 am. When I got home from work, Matthew was complaining about his stomach hurting. He said it hurt on the lower left side where he had had the surgery in September. He wasn’t vomiting and wasn’t running a fever. We called the oncology doctor on call, Dr. Richards. He told us to give Matthew some morphine and see if it helped. If Matthew started to vomit or the pain got worse, we were to call him back. Well, this was about 7 PM. We gave Matthew some morphine, and about ½ hour later he said “Mom, you have to take me down to the hospital. Something is really wrong.” So, we called Dr. Richards and told him we were going down to the hospital. We got to the Emergency Room at about 9:30 PM, and Matthew was hurting a lot. They didn’t want to give him anything for pain until after the doctor had evaluated him so it wouldn’t mask something that was wrong. They did an x-ray and it didn’t show anything. They called the surgery department in to see Matthew. I was disappointed that Dr. Minkes was off that night and would be at a different hospital the next day.

After the surgery department saw Matthew, they decided they wanted to do a CAT Scan to see what was going on. They finally gave him some IV Morphine. This helped a little, but Matthew still was hurting. He had to drink some oral contrast, and they took him to CT at about 12:30 am. They couldn’t do the scan at that time, because the contrast hadn’t moved far enough through his system to get to the point were he had the surgery in Sept. So they gave him more contrast and sent him back to the ER to wait. They continued to give him Morphine, but the pain was still there. We went back to CT at 3:30, and the contrast still wasn’t far enough. So, they gave him MORE oral contrast and sent us back to the ER to wait.

Tuesday, Januray 16, 2001

Matthew got a roommate today. It was Chad!! We met Chad and his parents, Chris and Brad in November when the boys ended up as roommates. Chad is 16 and has a different type of Leukemia (AML). His treatment is different. He gets high doses of chemo, but his treatment is only 6 months in length. He gets some of the same drugs that Matthew gets, but not as many. Chad likes to play on the computer, too, and brings his laptop down to the hospital when he goes for chemo.

Monday, January 15, 2001

Matthew was admitted to the hospital for his high dose ARA-C. He will get a dose over an hour every 12 hours for 4 doses. Then, 4 hours later he will get a shot of L-Asparanginase in his leg muscle. Then he will be able to come home. By the time we got from the clinic to his room, it was 2 PM, so his chemo didn’t get started until late afternoon. He tolerated the dose okay.

Monday, January 08, 2001

Matthew went to the clinic today for chemo. They sedated him and gave him the Lumbar Puncture (#11) and MTX in the spinal fluid. Each time they do the Lumbar Puncture, they take spinal fluid out to check to make sure there are still no leukemia cells there. So far, so good. Matthew did not get the Vincristine today because his intestines are sluggish. He did get the Daunamycin (DNR). We restarted the Sporonox for the fungal infection in his nose. Next week he gets the high dose ARA-C again.

Tuesday, January 02, 2001

Matthew's counts were good - ANC 2214, Hemoglobin 8.5 and Platelets 106. He got a shot of Methotrexate in his leg. This is the first time he has gotten the Methotrexate as a shot. He has gotten it in the Spinal fluid with the Lumbar puncture and IV. If he does okay with it in the muscle, in the future, I will be able to do it at home if Matthew is feeling well enough and doesn't need to go to the clinic. He will also start on a pill chemo drug, 6MP. He has taken this before without too much problem. He takes it on an empty stomach at bedtime. Next week he is due for the Lumbar Puncture with MTX (Methotrexate) in the spinal fluid, and will get the Vincristine and Daunamycin. Since he had such a hard time with the Vincristine last time, we will stop his Sprornox 5 days before (Tue) and 5 days after. They will also reduce the dose of Vincristine. I worry that the fungal infection will come back if Matthew stops the Sporonox, but he can't take it and the Vincristine, and he needs the Vincristine to fight the leukemia.

Tuesday, December 26, 2000

Matthew went to the Oncology clinic today for more chemo. His counts were good-ANC 1860, Hemoglobin 9.2 and Platelets 116. Matthew got IV VP-16 and IV Cyclophosphamide. These usually drop his counts pretty much and makes him pretty sick to his stomach. Luckily he will continue on TPN to keep the calories going in when he doesn't feel like eating. He will go in for chemo next Tuesday if his counts are high enough.

Monday, December 25, 2000

Merry Christmas!! Today was such a good day. After opening presents at home, we were off to Dirk's parents for brunch and more presents. Matthew's cousins were there and he felt good. After brunch, we went to my mom's for snacks and more presents with more family. When we came home in the late afternoon, everyone was tired but happy. It was so good to see Matthew feeling good. I almost hope that his counts aren't good enough for chemo tomorrow, but I know we need to move on with this therapy.

Sunday, December 24, 2000

Christmas Eve. Matthew is feeling good! Christopher came home in the afternoon and Julie and I cooked dinner. My mom and Aunt Frances (from Buffalo, NY) and Dirk's mom and dad came over for dinner. It was a really nice time.

Monday, December 18, 2000

Well, Matthew's Platelets still aren't high enough for chemo, so he will be delayed a week. They were only 57 and they need to be 75. Next Monday is Christmas, so he will go to the clinic on Tuesday to see if he is ready for chemo. It is really kind of good for Matthew. He is feeling better and hopefully will feel good enough to enjoy Christmas. Julie came home today for semester break. Christopher is going to New York City until December 24 with a service group from Wash. U. They will work in various soup kitchens and homeless shelters during the day and sight see at night. It is a good opportunity for him.

Monday, December 11, 2000

Matthew's counts were not high enough for chemo. His ANC was okay at 2,660, but his Platelets were only 22. We will check again next Monday to see if he is ready. He is feeling pretty good and can use the break.

Friday, December 08, 2000

Matthew got to come home today. He will go down to the clinic for more chemotherapy if his counts come up enough. He is on TPN and Vancomycin. He will continue the Neupogen until his ANC comes up more.

Thursday, December 07, 2000

Matthew's counts are pretty low today- Hemoblobin 6.9 and Platelets 7. He received 2 units of PRBC (#26, and #27), and 1 unit of Platelets (#24). His ANC is starting to come up (470), so hopefully he can come home tomorrow. Matthew does have bacteria, staph, growing in his blood again, so he will go home on Vancomycin again for a week. This is probably from the TPN and his ANC being so low for so long.

Matthew and Chad are getting along well. It is good to see Matthew interacting with another patient down at the hospital. Chad is in for chemotherapy and will probably go home tomorrow or Saturday.

Monday, December 04, 2000

Matthew was due for chemo today, but his counts weren't high enough. His platelet count was 12 (needs to be 75) and his ANC is only 12 (needs to be 500). He went to the clinic for Platelets (#23) and he was running a fever. Since his ANC was low, he was admitted to the hospital and started on IV Antibiotics, again. They drew blood cultures from his central line to see if there is an infection in his blood, but they won't know this until tomorrow. They will start him on an antibiotic, Ceftaz, until they find out if something is growing in his blood.

Matthew has a great roommate this time. It is a 16-year-old boy named Chad. He is from Illinois (about 2 1/2 hours away). Chad has a different type of leukemia than Matthew, called AML. His treatment is for a shorter duration, only 6 months, but is pretty intense. His mom, Chris, and Dad, Brad, are really nice. Chad is a good kid with a real good attitude. He and Matthew share a love for computers, which is neat. It is nice for Matthew to have a roommate (for a change) who has a little in common with him.

Matthew will probably be in the hospital until his ANC comes above 500. Hopefully not too long.

Friday, November 07, 2000

I drew Matthew's blood yesterday and his counts really dropped since Monday. His ANC was 441. It will probably drop more from the ARA-C before it comes up, so they restarted his Neupogen. His Hemoblobin was 7.2, so he came in to the clinic today and received 2 Units of PRBC (#24, and #25) and 1 unit of Platelets (#22) because his Platelet count was 8. Hopefully, he won't develop an infection with his ANC so low. We will keep our fingers crossed and pray that he doesn't start to run a fever.

Monday, November 27, 2000

Julie and Christopher went back to college last night. It was sad to see them go - I really enjoy having everyone home. Thanksgiving Day, Matthew didn't feel very good, so he stayed home while the rest of us went to my Mother's for a while in the afternoon. Matthew was feeling a little better in the evening. Friday, Matthew was feeling pretty good, so I cooked Turkey and all the fixings and we had Thanksgiving with just our family. It was nice and Matthew ate well. Saturday, we went to Dirk's parents for dinner. Matthew stayed home. He wasn't feeling as good and the smells were making him feel sick.

I checked Matthew's counts today, but he was not due for chemo this week. He is on Neupogen to keep his ANC up, and it was 21,000 today!!! Needless to say, we stopped the neupogen. I will rechek his labs on Thursday. He remain on TPN at night to give him extra calories.

Wednesday, November 22, 2000

Matthew came home this morning. Julie and Christopher came home this afternoon. It is so good to have all my children home. I hope that everyone has a good Thanksgiving holiday.

Monday, November 20, 2000

Well, Matthew's counts are good enough for chemo. He was admitted for high dose ARA-C. He will hopefully get to come home on Wednesday. It will be good that he will be home over Thanksgiving, but I don't know how good he will be feeling from the chemo. Julie and Christopher will come home from their respective colleges on Wednesday.

Saturday, November 18, 2000

Matthew's intestines are finally waking up. He was able to go home today, on TPN again. I can't believe that he will have to go to the clinic Monday, and if his counts are good enough, he will be admitted for more chemo - High dose ARA-C. I wish they could give his body a rest, but they do not want to delay the therapy too much and allow the leukemia cells to multiply. The ARA-C always causes Matthew a lot of nausea and vomiting. It also causes his counts to really drop. In the last phase, his ARA-C was given over 6 hours each day for 4 days. In this phase, he gets the same dose over 1 hour every 12 hours for 4 doses.

Tuesday, November 14, 2000

Matthew is still in a lot of pain and his intestines are not waking up from the vincristine. He was admitted to the hospital to make sure he doesn't have a bowel obstruction. He had an x-ray of his abdomen, which showed no obstruction. It is a balancing act to keep his pain managed with the Morphine, but it can cause the bowel to remain inactive, in addition to the Vincristine. They started him back on TPN because he has not been eating due to the severe pain and abdominal discomfort. The doctor says it is just going to take time for his intestines to wake up. They will have to figure out something different to do the next time he receives Vincristine because he cannot go through this again.

Thursday, November 09, 2000

Matthew has been in extreme pain since his chemo on Monday. He just lies on the couch. He is on Morphine pills for the pain, but it doesn't help a lot. He says his legs and arms hurt. He also says his chest hurts so bad that he has trouble breathing. It is so hard to watch him suffer. I called the clinic to let them know what was going on with Matthew. They said that this was common with the VCR, and to try to keep him comfortable with the Morphine. He did not have this reaction to the VCR when he had it before. They have discovered that the Sprornox he is taking for the fungal infection in his nose caused the side effects from the VCR to be intensified. He was not taking the Sporonox when he got the VCR before. He also has a severe ileus, where his bowel is not moving. We will increase the meds to try to get his intestines to start to move.

Monday, November 06, 2000

Matthew starts his next phase of chemotherapy today. It will be six 6-week cycles for a total of 36 weeks. Today, since it was a new phase, he had an echocardiogram to check to make sure his heart is doing okay (it is). Some of the chemo drugs he will be getting in this phase can cause problems with his heart. He also had another lumbar puncture with MTX in the spinal fluid (#10) and they also did a Bone Marrow Biopsy to check to make sure that he is still in remission (HE IS!!!!!) This can be painful, but they do a good job sedating the kids for these painful procedures. They always listen to Matthew, and if he doesn't feel he is sedated enough, they give him more sleeping medicine. Sometimes he is more asleep than others, depending on what they are doing. He received 2 chemo drugs, Vincristine (VCR) which can cause severe nerve pain and can also cause the bowel to become paralyzed for a while. They will have to watch this closely on Matthew, because he was scar tissue in his intestines where they did his surgery in September, and he can form an obstruction at this area. He has had the VCR before and did not have any problem with it except for tingling in his fingers and toes. He also received Daunamycin (DNR) which he has also had before. This is the one that can cause heart damage. He will also be taking high dose steroids for a week. These will make him very hungry and will also cause his face to become puffy. They can also cause irritability and moodiness, but he did not have much problem with this last time he took them.

Monday, October 30, 2000

Matthew's ANC was high enough for him to come home today. He has been eating well, so they are going to stop his TPN, which is good news. They will continue to monitor his weight. He will continue the Vancomycin at home for 7 more days. He will get it every 8 hours around the clock.

Friday, October 27, 2000

Matthew's counts continue to drop. His Hemoglobin was 7.0, so he got 1 unit of PRBC (#23). His ANC is 0 and his platelets are down to 36. This is what usually happens after this particular round of chemo. Hopefully, his ANC will start to come up and he will be able to go home soon. They think that the infection in his central line is because of the TPN he has been on for nutrition since surgery. It has a lot of sugar and fat, which is a good medium for bacteria to grow. Also, with his ANC so low, he has nothing to fight the bacteria. Hopefully, since he is eating better, he can stop the TPN when he goes home.

The dose of chemo he got on the 16th was the last in this second phase of his treatment (Consolidation). When he goes in for his next chemo, he will start the third of four phases called Continuous Intensification. It will be for 36 weeks. It is had to think about the fact that this will probably last through the summer.

Thursday, October 26, 2000

Matthew's counts are really dropping from the VP-16/Cyclophosphamide he received. His ANC was 30 today and his Hemoglobin was 7.5, and Platelets were 64. They probably will not give him blood today, but wait until tomorrow to see if his Hemoglobin is higher. He will probably stay in the hospital and on IV antibiotics until his ANC rises above 500. His blood cultures they drew yesterday out of his central line are growing a staph bacteria. This means that he has a bacteria in his bloodstream. They started him on another antibiotic, Vancomycin. He will probably be on it for 7 - 10 days.

Wednesday, October 25, 2000

Matthew woke up this morning with his abdomen hurting. We took him down to the clinic, and while he was there, his temperature went up to 102. His ANC was 99, so he was admitted and started on IV antibiotics. They drew blood out of each lumen of his central line to check to see if there is any bacteria growing in the blood. If there is, he will start on another antibiotic, Vancomycin, until they find out what bacteria is growing. Then they will change the Vancomycin if needed. The vancomycin covers most staph and strep, so they start it first.

Friday, October 20, 2000

Matthew came home today. He will be on Neupogen starting tomorrow until his ANC comes up. This chemo drops his counts really low, also. Hopefully, he will not start running a temp or develop and infection.

Monday, October 16, 2000

Matthew's counts were good enough for chemo today - Hemoglobin 10.7, Platelets were 119 and ANC 1850. He had another Lumbar Puncture with chemo (MTX) in the spinal fluid (#9), then he was admitted to the floor for chemo. He will get VP-16 and Cyclophosphamide daily for 5 days. He has asked them to keep him "knocked out" during this chemo since he vomited the whole week last time. His weight is up to 97 pounds (up 9 pounds since starting TPN). They will continue the TPN since he won't feel like eating. He normally doesn't eat the hospital food anyway. He got so tired of the same things after being down there the whole month of April, that he won't eat it now.

Thursday, October12, 2000

Matthew's Hemoglobin was only 7.3 today, so he had to go down to the clinic to get 1 unit PRBC (#22). His platelets are okay at 53 and his ANC is 510. Will see if he is ready for chemo on Monday.

Monday, October 9, 2000

I drew Matthew's blood today to see if he could continue on with this chemo. His platelets were only 37, so no chemo. His ANC was up to 4004. I'm glad that the chemo will be delayed so that Matthew has a little chance to heal and recover from the surgery, but I worry that by delaying too long that the leukemia cells will start to increase. The chemo Matthew gets next is the VP-16/Cyclophosphamide that makes him feel so sick to his stomach. Will check his blood again Thursday.

Tuesday, October 3, 2000

Matthew got to come home today!!!! His Platelets are 25, but his ANC is 1364! How good to have him home. He is still weak and in some pain, but he is feeling fairly good. He came home on TPN, which is an IV nutrition. When he was admitted the day before surgery, his weight was down about 11 pounds since he was diagnosed. He had not been eating very well, and the doctors had made the decision to start him on TPN before we knew he needed the surgery. It will give him the nutrition he needs to help heal from the surgery. He can still eat what and when he wants, it just ensures that he gets the calories he needs. He gets hooked up to the pump for 12 hours overnight, so he is free to move around during the day.

Monday, October 2, 2000

Matthew continues to improve every day. His Platelets were 19 today, and they gave him 1 unit Platelets (#21). I think they are trying to keep his platelets higher because of the surgery and the chance of bleeding. His ANC was up to 930 today, so they took him off the antibiotics and Neupogen. If he remains fever-free, hopefully he can come home soon. They are continuing to delay his chemo another week to let him heal. His pain is pretty well controlled on oral pain medicine.

Thursday, September 28, 2000

Matthew finally has some granulocytes of his own!!!!! Not enough to fight infection, so they gave him another granulocyte transfusion today. Hopefully it will be the last. His platelets were also low, so he received more platelets (#20).

Wednesday, September 27, 2000

Happy Birthday to you! Happy Birthday to you! Happy Birthday, dear Julie! Happy Birthday to you! Happy 20th Birthday, Julie. We love you!

Matthew’s potassium was low again today, so he got some more IV potassium. He received another granulocyte transfusion (4th) at about noon. This afternoon, they decided to move Matthew back up to 9 west. Matthew surprised everyone in the ICU by walking up to the floor. They said they had never had anyone walk out of the ICU. As we went down the hall, I half expected them to all start cheering. It sure was good to get back up to the floor. Matthew still has an ANC of 0. They can't even find any white cells to count. I sometimes worry that they have killed off Matthew's bone marrow to the point that it won't recover. He has never gone this long without his ANC recovering. The Doctors are not worried. Their feeling is that if the chemo is doing this much damage to his bone marrow, then it must also be doing a lot of damage to the leukemia cells.

Tuesday, September 26, 2000

Matthew’s potassium was critically low today, so they gave him some IV potassium. They have to give it in the ICU so they can monitor his heart while they give it. The amphotericin B causes the potassium to be low. His platelets were also low at 40. Normally they don’t transfuse platelets until they get below 10, but Matthew had platelets donated for him that were due to expire, so they gave him platelets (#19). He still had an ANC of 0, but they are going to give him a break and not give him granulocytes today. One of the side effects of the granulocyte transfusions is that they can stick in the lungs and cause breathing difficulties. Luckily Matthew has not had any problems from the granulocytes so far, but they wanted to give his body a rest.

Monday, September 25, 2000

Matthew got his 3rd granulocyte transfusion this am - very early. His fever finally came down at about 5 am. Matthew was moved back down to the ICU this afternoon. It wasn’t that he had gotten worse, but they wanted to give him another granulocyte transfusion. They needed to watch him closely, and they didn't have a nurse they could assign just to him.

Sunday, September 24, 2000

Matthew finally got his second granulocyte transfusion at about 2am this morning. He did well with them – no reaction. This afternoon they moved him back up to the oncology floor, 9 west. It was good to be back to a familiar floor with nurses we knew. He started running a fever this afternoon right before he was moved to the floor. His temp was up to 104.8 by evening, so they put a cooling blanket under him. Matthew was miserable - He just shook on the cooling blanket. He said it felt like falling down in a puddle of slush. They kept giving him tylenol to try to get his fever down. Even though this was a very high fever, they felt it was encouraging because the donor white cells were probably fighting infection. Since he did start running a fever, they added another antibiotic, Amphotericin B, which is a very strong antifungal medicine. Since Matthew has so much going on with him, he a his own nurse on the floor. She was really busy with all the antibiotics. He is also to recevie another granulocyte transfusion tonight.

Saturday, September 23, 2000

Matthew finally got the granulocytes around noon. He did well with them, no reactions. He was awake off and on, but seemed pretty comfortable. The are planning to give him another granulocyte transfusion tonight. They say it should be about 10 pm, but I won’t expect them until later. Matthew still has an ANC of 0. They doubled his Neupogen ( medicine to stimulate his bone marrow to produce more WBC’s) but still no results. He is on four different IV antibiotics to fight infection. He hasn’t run a fever, which is a normal sign of infection, but they said that that is not unusual, since he has no white cells to fight bacteria. This is what causes a fever. They still are sure he has an infection, so they will keep him on all the antibiotics until his counts come up.

Friday, September 22, 2000

When I got back to the hospital at about 6 am, Matthew was still sleeping. They kept him sedated most of the day to keep him comfortable. Julie and Christopher came home and spent time at the hospital with him, but he was pretty out of it. It was hard because only two people could be in Matthew’s ICU room at a time, and it seemed like everyone came down to see him. Also, since he had no neutrophils (white cells) to fight infection, everyone had to wear masks and wash hands to come in the room.

They are planning to give Matthew his first granulocyte transfusion tonight, but it will not be available until around midnight. The doner came in at about noon to donate the WBC’s, but a lot of testing had to be done. Matthew’s hemoglobin and platelets were stable, but he still had and ANC of 0. Since noone in the ICU had given granulocytes before, a big deal was made about it. They can cause a reaction because Matthew's body will recognize them as something foreign and try to fight them. They can also "stick" in his lungs and cause problems with breathing. Luckily, since he is in the ICU, they can monitor him closely. Matthew was a little anxious about the transfusion, and so was I. I stayed with Matthew in his ICU room. At about midnight, they said it would be about 2am before the granulocytes would be available. Matthew dozed some, but when he would wake up, he would be confused from the morphine and try to pull out his NG tube, so we had to watch him very closely.

Thursday, September 21, 2000

September 21, 2000 – Matthew's stomach was still hurting a lot this morning. The pain had settled in the right lower quadrant of his abdomen, so they decided to send him down for an ultrasound to make sure it wasn't his appendix. While he was in ultrasound, he was fairly comfortable from the morphine, so he dozed off and on. The radiologist saw something unusual on the ultrasound, so they kept calling different doctors in to get their opinions. They thought he had an area of typhlitis, but they also thought they saw an intussusception (where the bowel telescopes upon itself). This is an emergency situation because it cuts off the blood supply to the bowel causing it to die. None of the radiologists had ever seen this in an older child like Matthew or in a child as neutropenic as Matthew. To be sure of what the thought they were seeing, they took Matthew across the hall and did a CT of his abdomen. When we came out of the room, Matthew’s nurse from the floor, Barb (the nurse practioner), Dr. Wilson (his attending oncologist), Dr. Crawford (the oncologist who was on call the previous night), and Dr. King (the oncology fellow)were waiting for us in the hall. I knew something was seriously wrong.

The doctors said that Matthew needed emergency surgery to correct the intussusception, but that it was extremely risky with Matthew’s counts as low as they were. When we got back up to the floor, the nurse called Dirk at work while the surgery fellow came up to see Matthew. She felt he was too much of a risk for surgery, but the attending surgeon, Dr. Minkes, felt we didn’t have a choice.

Matthew has always been involved in his care and has always wanted to know what was happening. When he found out about the surgery, he was very quiet. Dr. Minkes told us that if the intussusception could not be pulled apart, they would have to remove that area of bowel. Because of the chemo, Matthews bowel would probably be too fragile to reconnect, so Dr. Minkes said that Matthew would probably have a temporary colostomy. Try telling a fourteen-year-old that he would probably have a bag stuck to his abdomen to collect stool. Dr. Minkes also told us that Matthew would probably be intubated when he went to the Intensive Care Unit after surgery so that a machine could help him breathe. Because he had no white blood cells to fight infection, there was a very high chance that he could develop a life-threatening infection after the surgery.

When Dirk got to the hospital, I told him what was happening, and we decided that he should call his mom and dad to come down. My mom was out of town, so we could not reach her. We decided that it would be better to wait and tell Julie because we were worried that she would want to drive home and we were worried about having her drive the four hours worrying about Matthew. Christopher was in class so we couldn't reach him.

The doctors ordered more platelets for Matthew to try to control bleeding during surgery (#14, #15, #16, #17, and #18) and started him on more antibiotics to cover any bacteria/organism that could be in his bowel and cause infection.

I guess word got around the hospital about Matthew’s condition, because doctors from the oncology clinic and even doctors and nurses who had taken care of Matthew throughout his care since admission in March come by to see him. I think it kind of worried Matthew because everyone was so serious.

Dirk’s mom and dad got to the hospital, along with one of Dirk’s brothers, Paster Arle (our pastor at church), Julie (the youth director), and one of the elders from the church. We were glad they were there to help us get through the surgery. We were worried that if Matthew saw everyone down at the hospital, he would think that we thought he wouldn't make it through the surgery. We had everyone except Dirk's Mom and Dad stay out of sight. It was not unusual for them to stop in to see Matthew when he was down at the hospital, so we told Matthew they just happened to stop by to see him.

Matthew amazed everyone by walking down to surgery, here we met the anesthesiologist and the rest of the surgical team. After they began to sedate Matthew, they took him into a room and Pastor Arle and Julie, the youth director, came in and said a prayer for Matthew. He was sedated enough that he didn’t remember this later, but he looked right at Pastor Arle after the prayer.

The surgeon, Dr Minkes, told us that the surgery would last about 1 - 1 1/2 hours, but that someone would let us know how thing were going about 45 minutes after they started.

We all went to the surgical waiting room. The wait was unbearable. I don’t know how we would have endured the wait without the support we had from family and friends. We waited and waited. It got to be and hour and a half after they took him to surgery and we had not heard a word. I couldn’t help but imagine the worst. I knew something was wrong and that was why they couldn’t come tell us what was happening.

Finally, about two hours after they took him to surgery, the OR called and told us that Matthew was stable. The were in his abdomen, but they hadn’t removed any bowel yet and he didn’t have a colostomy. I learned later, that they had separated the intussusception and were waiting to see if enough blood supply would return to the area so they would not need to remove that section of bowel. When surgery was finally done, after three hours (an eternity!) Dr Minkes came out to talk to us. It was a miracle, but Matthew was in the recovery room, extubated, and breathing on his own. They had to remove about 18 inches of his large intestine, but his intestine was healthy enough that they felt comfortable reconnecting it inside so that he did not have a colostomy. The biggest concern now was infection.

Matthew’s primary oncologist, Dr. Wilson, came to see us and told us that they wanted to give Matthew granulocyte (white blood cell) transfusions to try to give him something to fight infection until his body started to produce its own white blood cells. This was a fairly unusual approach that was occasionally used on adult Bone Marrow Transplant patients. They would have to monitor Matthew closely during these transfusions because his body could have a reaction to the foreign white cells.

When Matthew finally woke up in the ICU, the first thing he asked was if he had a “bag” on his stomach. It felt so good to tell him that it was not necessary. He was in isolation because of his risk for infection. He had a tube down his nose (NG tube) to keep secretions out of his stomach which could cause nausea. This really bothered him, but they kept him pretty sedated with morphine for the pain. I had been up for nearly 24 hours straight, so since Matthew was stable and asleep, I went home at 2 am for about 4 hours to sleep.

Wednesday, September 20, 2000

Matthew called me today at work complaining about his stomach hurting. When I got home from work, he was having some vomiting in addition to the stomach pain. We called the oncology doctor on call, Dr. Crawford, and were told if it got worse or if he began to run a fever (since he was neutropenic), to call him back. An hour later, his stomach was hurting so bad he could not lie still, so we called the doctor back and were told to bring him down to the hospital.

When we got to the hospital, they gave him some morphine for the pain and drew some blood. They did an xray of his abdomen and admitted him to 9 West, the oncology floor. When they got the results of his bloodwork, his hemoglobin was 6.1, Platelets were 2 and he had an ANC of 0. They were able to keep Matthew fairly comfortable throughout the night with IV Morphine. Dr. Crawford came in to see Matthew at 1:30 am and was concerned that he might have typhlitis (an infection of his bowel caused by the chemo he received). Because he had nothing to fight infection, he was started on multiple antibiotics. He also received a unit of PRBC (#20) and 1 unit of Platelets (#13) to try to bring his counts up. Dirk left to go home at about 2 am, I stayed down at the hospital with Matthew.

Thursday, September 14, 2000

I drew Matthew's blood today - His counts are really low. His platelets were only 7, so he had to go down to the clinic for 1 unit of Platelets (#11). His ANC is 0, so he has nothing to fight infection. We will continue the Neupogen each day to try to get his White count up, and hope he doesn't start running a fever. The doctors told us that if his temp goes above 100.4, to bring him down to the hospital.

Monday, September 11, 2000

Matthew was feeling pretty nauseated from the Chemo he got last week, so he stayed home from school. I drew his blood and his counts are starting to drop from the ARA-C/Idarubicin. His Hemoblobin was only 6.8 so he had to go to the clinic to get 2 units PRBC (#17 and #18). His platelets are 40. I will recheck his labs on Thursday. His ANC was 1350, but it should be dropping pretty quickly. I will probably keep him out of school the next few days just to make sure he doesn't get sick. He still feels pretty tired and nauseated most of the time.

Tuesday, September 5, 2000

Matthew went down to the Oncology Clinic today. His counts were good enough for his ARA-C/Idarubicin. His Hemoglobin was 9.2, Platelets were 78 (barely high enough, but a go) and his ANC was 608. He was admitted to the Oncology floor (9W) for chemo. He will come home Friday. This chemo really dropped his counts last time. He will start on Neupogen to try to keep his WBC/ANC up on Sunday. He will continue it until his ANC drops to the low and then comes back up.

Sunday, September 3, 2000

We all met for church today. After lunch, some of the group went down to Busch Stadium to go to a Cardinal baseball game. Matthew and I stayed home. They dropped Christopher back at college after the baseball game. He goes to school at Washington University here in St. Louis. Dirk and I took Julie and Brad out to dinner at TGI Fridays, then they left to go back to school in Murray, Kentucky. Matthew didn't feel up to going out to dinner. Tomorrow is Labor Day, so the oncology clinic is closed. We will go down on Tuesday to see if his counts are good enough for chemo. This was really a good weekend for everyone, but I think we were all tired.

Saturday, September 2, 2000

This morning we had a photographer reserved to take family pictures. We met at Dirk's brother, Dale's, house and had pictures taken in his neighbors back yard. It was really pretty - a lot of greenery and flowers. We took pictures of the whole group and then each individual family. We all dressed in khaki bottoms and blue tops. We also took pictures of all the grandkids, and also of Grandma and Gramdpa Hallemeier and their four sons.

In the early afternoon, we had rented a pavillion at a local park for a picnic. We barbecue'd and had a lot of other food. The kids all had a good time playing with their cousins. Matthew had a pretty good time, but I could tell he was tired. We left in the late afternoon and went home to take a nap before dinner.

The adults all went out to eat for dinner, and the cousins all met at Dale's house for pizza and movies. I think they all had a good time. Tomorrow, we will all meet and go to church together.

Friday, Spetember 1, 2000

This weekend is Matthew's Grandma and Grandpa Hallemeier's 50th Wedding Celebration. Matthew's sister, Julie, and brother, Christopher came home from college. Julie brought her boyfriend, Brad, home with her. He lives in Atlanta and goes to school with her. Dirk's two brothers from Florida came home, too, so the whole family was here. We have a lot of things planned for the weekend. Matthew is tired, but doesn't feel too bad. Tonight we had a dinner celebration for them. A lot of friends and church members came. Matthew couldn't stay during dinner, because the smells of the food bothered him. Even though he hasn't had chemo recently, he still gets nauseated with smells. The dinner was at a Holiday Inn, and Dirk's brothers both had rooms, so Matthew went up to one of the rooms and rested. We stopped on the way home to get Matthew tacos at Taco Bell because that is what sounded good to him. Of course everyone else was hungry, too, so we had tacos at 10:30 at night.

Wednesday, August 30, 2000

Matthew did not go to school today. He was really tired. I checked his blood and his Hemoglobin was 6.6 and his platelets were 15. I took him down to the oncology clinic for 1 unit of PRBC (#16) and 1 unit of platelets (#10). His ANC was only 378 so it was a good thing he didn’t go to school. As I said before, if his ANC is below 500, he is very susceptible to infection. I will probably keep him home from school tomorrow and Friday so he doesn’t get sick. We will recheck his blood on Monday to see if he is ready for chemo.

Monday, August 28, 2000

Matthew’s counts still aren’t high enough for chemo, so we will be delayed another week. His Platelets are only 18 and his hemoglobin is dropping at 7.8. He went to school today, but I know he was tired. I will check his blood again tomorrow or the next day, to make sure his ANC is not too low to go to school and to see if he will need blood.

Monday, August 21, 2000

Matthew started his freshman year at Pattonville High School. He was supposed to be admitted today for a week for chemo (ARA-C), but his platelets weren’t high enough. They have to be 75 and they were only 71. I know this is close, but they are very particular about Matthew meeting the criteria for each round of chemo. He had a good day at school, but he was really tired when he got home. With his Hemoglobin being lower than normal, he gets tired and out of breath easily. His Hemoglobin was 9.6 today. His chemo will be put off for 1 week.

Friday, August 18, 2000

I took Matthew up to the high school to find his classes and locker. We also met with his counselor, Miss Cooper, to try to make school as easy as possible under the assumption that Matthew will miss quite a few days of school.

Thursday, August 17, 2000

Tonight was registration/orientation up at the high school. Matthew went and wore his hat. He is now completely bald and has lost eyelashes and eyebrows. We talked to the principal ahead of time and got permission for Matthew to wear his hat. Normally, the students are not allowed to wear hats at school. Matthew got frustrated with people who didn’t know his situation telling him to take off his hat, that we came home early. I know that it is not me, but I told Matthew that maybe it would be better to just go without a hat and let people look the first few days, but that they would get used to it. If he wore a hat, he would look out of place because he would be the only one with a hat on, and then when he finally did take it off, then he would have to go through people looking again. I don’t know what he will do. I wish I could make it better for him.

Wednesday, August 16, 2000

Matthew cleared the MTX earlier than usual. He got to come home today. His next chemo is due on August 28, 2000. This is not good because that will be the first week of school for Matthew. He will be a freshman up at the high school.

Monday, August 14, 2000

Matthew’s counts were high enough for chemo. His platelets are 86 and his ANC is 1159. He got another Lumbar Puncture (#7) with MTX in the spinal fluid, and then he was admitted to the hospital for 24 hours of IV MTX. They will check a level on Wednesday to see if he can come home.

Monday, August 7, 2000

Matthew’s Platelets were only 27 today, so no chemo. It will be delayed a week. His HGB was good at 10.1 and his ANC was 1,008. We will try again next week for chemo.

Monday, July 31, 2000

Matthew’s HGB was low today, 6.9, so he went down to the clinic for 2 units of PRBC (#14 and #15). He is due to be admitted for his next round of chemo next Monday, Aug. 6 if his counts are okay.

Thursday, July 27, 2000

Matthew came home this morning. His level was low enough at 5 am, so I went down to pick him up before I went to work. He was so anxious to come home. He usually doesn’t eat while he is in the hospital. He hates the food. I don’t think it is too bad, but when he was down for induction during the month of April, he was on the steroids and was so hungry all the time, that I think he got sick of the food.

Monday, July 24, 2000

Matthew’s counts were good enough for chemo today, so he went to the clinic and got another Lumbar Puncture (#6) with MTX in the spinal fluid and was admitted for IV MTX and oral 6 MP at bedtime. He will get the MTX over 24 hours then have a level drawn 24 hours later to see if it is low enough for him to go home.

Monday, July 10, 2000

Matthew had to go to the clinic today for blood. His HGB was 6.9 so he got 2 units of PRBC (#12 and # 13). His Platelets were 16. He has several weeks off to recover from this chemo because it is pretty bad. He is due for more chemo on July 24.

Friday, July 7, 2000

Matthew came home today. He has been throwing up all week. This has been the worst chemo so far as far as vomiting. It is so hard to watch him be so sick and miserable. I just have to keep remembering that this is necessary to get rid of the cancer cells.

Tuesday, July 4, 2000

Matthew got a pass to come home for several hours after his chemo. It was a big mistake. He was nauseated all afternoon. Then he started vomiting. We took him back to the hospital early because he felt so bad.

Monday, July 3, 2000

Matthew’s counts were good enough for chemo – HGB 8.6, Platelets 233, and ANC 4,300. He got another Lumbar Puncture (#5) with MTX in the spinal fluid in the clinic. Then he was admitted for yet two new chemo drugs – VP-16 and Cyclophosphamide. These will be given over 1 ½ hour each day for 5 days. These drugs can also drop his ANC a lot, so he will go home on Neupogen again.

Monday, June 26, 2000

Matthew’s counts were not good enough for chemo today, so he will be delayed a week. His Platelets were 33, but they gave him a unit of Platelets anyway. I think it was because they were donated specifically for him and they were going to expire if not used. This was (#11). He has lost almost all of his hair on his head. He is self conscious about it, but he has a nice shaped head. I think he looks cute.

Sunday, June 25, 2000

Matthew’s blood cultures were not growing anything, and his ANC is above 500, he got to come home today. He is supposed to get chemo tomorrow, but his platelets are only 25 today, and they have to be 75.

Wednesday, June 21, 2000

Matthew went down to the Oncology clinic today for Platelets. (#9). His level was 9. His ANC is still 0. While getting Platelets, he started running a fever. People can normally run a temp while getting blood or platelets, but since Matthew’s ANC is 0, He was admitted to the hospital. He had blood cultures drawn from his catheter in his chest and was started on antibiotics. He will remain in the hospital on antibiotics until his ANC comes above 500 unless the blood cultures show there is bacteria in his blood, then he will be in for 7 – 10 days. He is supposed to get his next round of chemo Monday. Matthew’s weight is down, because he has not felt much like eating, so they gave him TPN (Total Parenteral Nutrition) while he was in the hospital. This is given through the catheter in his chest (IV) and has fats and vitamins, and everything Matthew needs for nutrition.

Monday, June 19, 2000

Matthew’s ANC is still 0. Still no fevers or signs of infection. If he starts running a fever of 100.4 or higher, he will be admitted for IV antibiotics. They will draw blood out of each lumen of his catheter in his chest to make sure there is no infection in the blood stream. The doctors say it is not uncommon for kids to run fevers when they are neutropenic (ANC <500). Matthew continues on the Neupogen, but so far, his ANC is not coming up. His Platelets are only 15, but they will not give him platelets unless his level drops below 10, unless he has any signs of bleeding (gums, nose, etc.).

Friday, June 16, 2000

Matthew had to go the clinic today for blood and platelets. His HGB was 7.3, so he got 1 unit PRBC (#10), and his platelets were 10, so he got 1 unit of Platelets (#8). His ANC is 0 so he is very susceptible to infection. He cannot go out in public or be around people who are sick. He had to wear a mask over his nose and mouth when he went to the clinic so he wouldn’t be exposed to any germs.

Thursday, June 8, 2000

Matthew came home this morning. His HGB was down a little, 7.9 last night, so they gave him a unit of PRBC (#9) to tank him up. The chemo he got this time can really drop his counts. He will start on an IV medication called Neupogen each night starting tomorrow. This will help his bone marrow make more white cells. Hopefully, it will not only keep his ANC from dropping so low that he gets an infection, but it will help it come up faster when it does.

Monday, June 5, 2000

Matthew went down to the hospital today. His counts were good enough for chemo, ANC 1,600, Platelets 137. He was admitted for two new chemo drugs, ARA-C and Idarubicin (IDA). IDA is similar to DNR in that it can effect the heart. He will get the ARA-C IV over 6 hours each day for 4 days, and the IDA over 15 minutes after each ARA-C infusion. He will get to go home probably Thursday or Friday. He got his first doses in the afternoon. They gave him extra medications for nausea, because these drugs can cause more nausea. He tolerated the chemo fairly well.

Monday, May 29, 2000

They got the results of what the Alternaria fungal infection will respond to. Matthew will quit the Amphotericin B each day and switch to an oral antifungal, Sporonox (itraconazole). He will take 200 mg in the am and 200 mg in the pm. This is a very high dose of this medication, but since the fungus is so aggressive and Matthew’s ANC will be low so much of the time during therapy so he can’t fight the fungus, the doctors feel he need this high of a dose. He will be on it for the remainder of his therapy and then for 6 months afterward.

Wednesday, May 24, 2000

Matthew came home today. He will continue on the oral 6MP. He will go back to the hospital for more chemo on June 5 if his counts are good enough. Matthew only made it back to school (8th) grade for one day since he was diagnosed the end of March. His teachers have been very supportive. One, his German teacher, even brought one of the school computers down to the hospital during April for Matthew to have in his room.

Monday, May 22, 2000

Matthew went to the Oncology clinic for another Lumbar Puncture (#4) with MTX in the spinal fluid and then was admitted to the floor for another 24 hours of IV MTX. His ANC was 2,701 and his Platelets were 240.

Wednesday, May 10, 2000

Matthew came home from the hospital today. His next scheduled chemo treatment will be in two weeks for a repeat of the IV MTX.

Monday, May 8, 2000

Matthew’s counts were good enough for chemo. His ANC was 4,828 and his platelets were 118. They did another Lumbar Puncture (#3) in the clinic under sedation and gave him more MTX in the spinal fluid. So far no signs of leukemia cells in the spinal fluid. He was started on fluids to hydrate him because the IV MTX can be hard on his bladder. They gave him a large dose of IV MTX first, then a slower infusion for 24 hours total. 24 hours after the MTX ends, they will draw a level and if it is low enough he can go home. If not, they will check it every 12 hours until it is low enough. He will also start on an oral chemo drug called 6MP, which he will take every night at bedtime for 1 month. It helps the MTX work better. Since both the Ampho B and MTX are hard on Matthew’s kidneys, they will not give him the Ampho B for 3 days.

Sunday, May 7, 2000

Confirmation Day. Today, Matthew was confirmed into Our Savior Lutheran Church in St. Charles, Missouri. Our pastor, Pastor Arle, had such a great service. He recognized several of the confirmands that had had difficult times while growing up. Then he had Matthew stand and talked about what a hero Matthew was to him. How he kept his faith and spirit throughout his treatments. He had me and a lot of the other parents in tears. It was a great service. After church, we had a confirmation celebration at Wilikers Restaurant for the family. Matthew was pretty tired when we got home. He did more today than he had done in a long time. Tomorrow he will be admitted for Chemo.

Monday, May 1, 2000

Matthew had his Bone Marrow Biopsy today by Dr. Wilson, his primary oncologist. They sedated him, so the was down there for several hours until he was awake. They already know the results of the Bone Marrow when we left – MATTHEW IS IN REMISSION!!!!!!!! He will go back down to the hospital next Monday for admission for IV Methotrexate. We will go to the clinic first for checkup and blood draw to see if his counts are high enough for chemo. His ANC has to be at least 500 and Platelets at least 75 for each round of chem. Matthew should have a pretty good week, since he is not on any chemo drugs. He gets confirmed on Sunday. His confirmation class talked about the boys shaving their heads for Matthew, but we discouraged it. They were great to offer, but Matthew has not lost all his hair. It is just thin.

Saturday, April 29, 2000

Matthew gets to come home today. His ANC was 560 yesterday, but down to 490 today. They will send him home on Ampho B that I will do at home each evening. He will get fluids to hydrate him for an hour before the Ampho B and then the Ampho B will run over 2 hours. He is to go back down to the Oncology clinic on Monday for a Bone Marrow Biopsy to see if he is in remission. If he is, he will move on the next phase of his chemo, Consolidation, which will be from week 6 to week 25. I don’t know what they will do if he isn’t in remission. Let’s just pray that he is.

Wednesday, April 26, 2000

The surgeon came in to see Matthew today before surgery. He thought it looked like the fungus had spread through the septum in the middle of his nose. I just pray that they are wrong and that they can remover it from the left side and not have to go through to the right. He went to surgery in the morning. After surgery, the surgeon came out and said that they could remover it from the left side and left the lining intact to the right side. Matthew will have packing in this nose for a day or two, but he did well with surgery overall. His ANC is coming up (60) today and his HGB and Platelets are stable. Hopefully he will be able to go home soon. His ANC has to be 500 or more to get to go home.

Tuesday, April 25, 2000

Matthew goes to surgery tomorrow morning. He cannot have anything to eat after midnight. This will be tough, because the steroids make him so hungry. Hopefully, they will take him to surgery early.

Monday, April 24, 2000

Matthew had a CT today. Luckily the fungus is just in the spot in his nose. The Ear/Nose/Throat (ENT) came up to see him. They will get him started on an antifungal medicine called Amphotericin B, and take him to surgery Wednesday to remover the spot from his nose. The Amphotericin B can cause flu-like side effects, so they will give Matthew Tylenol and Benadryl before the Ampho B to prevent their side effects. It can also cause damage to the kidneys, so they will monitor them closely.

Sunday, April 23, 2000

They discovered that the spot in Matthew’s nose is growing a fungus called Alternaria. It is not real common and can be quite aggressive. It can get into the sinuses and cause abscesses. They will take him down to CT tomorrow to check to see if it has spread into the sinuses.

Saturday, April 22, 2000

Matthew received a unit of PRBC (#8). He discovered a spot in the left side of his nose that has a white coating with black in the center. We showed the nurse, and they had the house doctor come up to see him. They had never seen anything like it before. They took a culture of it to see what was growing. The culture won’t be available for a day or so.

Friday, April 21, 2000

Today Matthew got his last doses of IV VCR and IV DNR during his induction phase. His ANC is still 0. His HGB is down to 7.5 today, so they will probably give him a blood transfusion today or tomorrow

Tuesday, April 18, 2000

Today Matthew got another L-asp shot (his last one during this induction phase of his chemo) and another unit of Platelets (#7). His ANC is still 0, so he remains on antibiotics and is susceptible to infection. So far, no fevers or signs of infection.

Friday, April 14, 2000

Today Matthew was sedated and received another Lumbar Puncture (LP #2) with Methotrexate (MTX) in the spinal fluid. He also got the IV VCR, IV DNR, and L-asp shot. He also received another unit of Platelets (#6).

Tuesday, April 11, 2000

Matthew got another shot of L-asp. He is really tolerating his chemotherapy well. His spirits remain good.

Monday, April 10, 2000

Matthew’s platelets were lower today. He got 1 unit of platelets (#5). We are getting volunteers to donate blood and platelets for Matthew. I am amazed at the outpouring of love that we are receiving. Everyone has been wonderful. You don’t realize how important it is to donate blood and platelets until you are down here a see what a great need there is for these by the cancer kids/adults.

Saturday, April 8, 2000

Today Matthew got another dose of IV Vincristine (VCR) and a new IV chemo drug called Daunorubicin (DNR) which can cause heart damage. That is why they did the tests on this heart when he was first diagnosed. Supposedly, the doses of DNR he will get will not cause damage to the heart. Unfortunately, these chemotherapy drugs are a poison, so they are going to have bad effects on Matthew’s body as they kill the cancer cells. Hopefully, the advantages will outweigh the disadvantages. He also got another shot of L-asp.

Wednesday, April 5, 2000

Matthew’s HGB down to 7.1, so he got 2 units PRBC (#6 and #7). His WBC is down to 0.8. He has an ANC of 0, so he has nothing to fight infection. Since he was running a fever when he was admitted, he was started on antibiotics and will remain on them until his ANC comes up enough to fight infection. They will also keep him in the hospital until his ANC comes up. Matthew is in good spirits. He got another shot of L-asparaginase (L-asp) today. He tolerated it well. He is aware he will probably loose his hair. It doesn’t seem to bother him. I told him I would probably cry when he lost it, and that I was just warning him ahead of time. He said, “It’s not like I am loosing my arm, you know. It will grow back.” I hope he has that attitude when he does loose it.

Monday, April 3, 2000

Today, Matthew’s HGB dropped from 8.1 down to 5.3. They determined he was reacting to one of the units of blood (PRBC-Packed Red Blood Cells) he has gotten so far (3 units) or the Platelets (PLT) 2 units so far. He got 2 more units of PRBC (#4 and #5). His Platelets were down to 7, so he got a unit of PLT (#3), and some other blood products to try to correct the problem with the reaction to the blood. The good thing is that the Chemotherapy is working – His WBC is down to 2.5. Matthew had been sleeping much of the last few days. This is good, because there is so much going on in his body as the leukemia cells ar

Sunday, April 2, 2000

Matthew got his first dose of L-asparaginase today. It is given as a shot into his leg muscle. It can cause some reaction in some people, so they watch him very closely. He said the shot itself didn’t hurt too badly, but the muscle cramped up real bad.

Saturday, April 1, 2000

This morning they took Matthew to surgery and put a catheter in his chest to give him chemotherapy, blood and blood products, and anything else he would need during treatment. It had two lumens, so they could run two things at once. They also did a Lumbar Puncture (LP #1) and withdrew some Cerebral Spinal Fluid (CSF) to check to see if there were any leukemic cells in the fluid. Then they gave him some chemotherapy (Methotrexate (MTX) ) into the spinal fluid. Luckily, Matthew did not have any leukemia cells in the CSF, but he will continue to have LP’s with MTX in the CSF throughout his therapy because this is a common site for the leukemia to reoccur. He was started on a high dose of oral steroids (dexamethasone) which he will take for a month. It will make him very hungry, and will probably cause him to have a round face. He got his first dose of IV Vincristine (VCR).

March 31, 2000

When I got to work this morning, one of the doctors was waiting for me. He said the lab had paged me about Matthew’s labs, but he hadn’t gotten through to them. At that moment, the results printed out on the lab printer at our office. His mono test was negative, but his CBC was very abnormal. WBC (white blood cells) 58.3 (normal 4.5-13.0), HGB (hemoglobin – red blood cells) 5.4 (normal 12.0-16.0), Platelets (these cause blood to clot) 26 (normal 130-400). His ANC (Absolute Neutrophil Count – cell that fight infection) was 0 (normal 1800-8000) and he had 67% blasts, or immature cells (normal amount is 0). The doctor said it looked like he had some type of leukemic process going on, and I just started crying. We called the other doctor in the practice, whose wife is a doctor down at St. Louis Children’s Hospital, and were told to bring Matthew right down. I had to call Matthew at home to tell him not to eat or drink anything because they would need to do some tests. He was by himself and when he asked why, all I said was that he was a little anemic and we needed to take him down to the hospital to have it checked out. I called my husband, Dirk, at work and told him to meet me at home.

When I got home, Matthew was in tears. He had gotten on the Internet and looked up anemia. He thought it was something wrong with his liver. After reassuring him as best as I could, even though I was loosing it inside, we took him down to the hospital. They were waiting for us. They drew some blood and checked him out. Then they told us that they were pretty sure he had leukemia, but that they wouldn’t know what type until they did a bone marrow biopsy. They sent us down for a chest x-ray, then for an EKG and Echo to check his heart (to see if he could tolerate some of the chemo drugs). When we got back to the Oncology Clinic, they sedated Matthew and did a Bone Marrow Biopsy. They started a blood transfusion (the first of many – his HGB was now 5.0). They admitted him to the oncology floor. This all happened before noon.
That afternoon, they came in and told us that he had leukemia, but that if he had to have leukemia, he had the best kind. That is such an ironic statement that still amazes me to hear. He had Acute Lymphoblastic Leukemia (ALL). They talked to us about protocols, and we signed the forms and they started treatment. He is on POG 9806, which is for very high risk ALL. The first phase of his treatment, which will last 126 weeks total, is called induction and is Day 1 through Day 29. He is considered very high risk because of his age (older is worse), and WBC (higher is worse).

March 30, 2000

This morning I drew Matthew’s blood before I went to work. It took a little longer to clot but I wasn’t really concerned. When I got the blood to work, the tube for the CBC had settled and had very little red cells in the bottom. I showed the doctor, and he said, “It looks like Matthew is a little anemic.” That night, as he sat at the kitchen table after dinner, I noticed how pale he looked. His lips had no color and he had dark circles under his eyes.

March 29, 2000

Today was Matthew’s 14th birthday. His dad, Dirk, was at home getting ready to go out of town for 2 days. He called me at work and told me Matthew was running a fever of 102 and the glands in his neck were so large you could see them from the outside. I called his pediatrician to see if I could get an appointment to take him in the next day, but they were full. They said to call back in the morning to see if they had any cancellations. I am a nurse and the doctor I work for said I could draw some blood from Matthew in the morning and send it for a CBC and a Mono test. Matthew thought he had mono, because a friend at school had mono and Matthew had been feeling the same way for about 6 weeks – tired, no energy, leg and back aches, and running fevers off and on.

Saturday, February 03, 2001 at 10:10 PM (CST)

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