Thursday, November 13, 2003 8:31 AM CST

Hello,

Yesterday was Jonathan's 7th Birthday. I remember last year feeling a little bit sad for him on his Birthday -- but this year was a whole different story. We had a family party at home last night since Rachel was sick with a high fever. I did enjoy the evening, but it was tempered with worry for Rachel. She is fine today, but I wonder if I will ever return to the days where my kids could just be sick -- instead I worry like crazy that they might have cancer.

Andrew helped me make the cake and Jonathan decorated it -- even wrote his own name on the cake. Unfortunately, my camera battery was dead so we didn't get any pictures of it.

The boys got up early this morning to play with Jonathan's new stuff -- they came and closed my bedroom door ... how polite ... actually I think they didn't want me to wake up and make them go to school, because when I did got up there were loud groans all around about not being able to play long enough.

On Tuesday of this week Jonathan spoke at a "Thank you" Party for people who have donated funds to help provide a Pediatic Cancer Center here in St. Cloud. It was a big deal ... people were really dressed up and Jonathan had to stand on a stage -- complete with lights, microphone, and a large audience. I am proud to say that he did GREAT! He answered the questions Dr. Melloy asked him and handed out awards like a perfect gentleman. I had tears in my eyes as I never expected that he would be able to do anything like that. He loved being on stage -- I'm going to have to look into drama camp for him next summer.

Please continue to pray for Noah and his family-- he has been in so much pain the last few days.

Love, Melissa

Tuesday, November 4, 2003 9:02 PM CST

Hello,

Jonathan had his first dentist appointment today since he was diagnosed with cancer 20 months ago. Remarkably, he had only 1 cavity. He was quite a trooper with getting the filling -- I could tell he was very much afraid, but after a few minutes of "laughing gas" he was calmer than I am in that chair!

The other kids had check-ups as well ... Andrew, my candy gobbling son, had no cavities and his twin brother Caleb, who prefers green beans over chocolate had 2! I just don't get it. Rachel exerted her typical little girl behavior and refused to even open her mouth (can't say I blame her!!)

All is mostly well here ... although my heart is heavy with the death last Friday of a little boy in our community from a brain tumor. I can't even imagine the grief they must be feeling tonight.

Brit's 2nd cousin's husband, Andi, lost his battle with cancer this month as well. He leaves behind a wife and 3 children ... I don't know what to say, except that I am very sad.

Please pray for Noah ... he is a boy from St. Cloud who is Jonathan's age whose leukemia is very aggressive and difficult to treat. The doctors do not have good news ... eariler today his parents were told that he may not live longer than 1 week. Pray for a miracle, pray for strength and wisdom for his parents, pray for a wonderful painfree sleep for Noah tonight.

It seems that all around me I am reminded of the nightmare of cancer. In light of those suffering around me, our family's journey into this darkness has been light. My heart is heavy tonight when I think of the anxious waiting that so many familes have to endure.

Melissa

Wednesday, October 22, 2003 9:13 AM CDT

Hello,

Jonathan continues to do great! We took a long trip to Missouri to visit my grandmother, aunts, and uncles. It was a long 12 hour drive for my father and I. The kids did well, though, and we had an awesome time. It was so fun to see them playing with my cousin's boys in the creek where I used to play. I spent hours talking with my aunts ... I truly have a wonderful family and really wish that I lived closer to them.

I was able to learn more about Sharon, my aunt who died of leukemia. My heart still aches for my grandparents and aunts and uncles who were deeply affected by her illness and death. I continue to be exceedingly greatful for the advances in medicine that have provided a treatment that works for so many children!

Thanks as always for your love and support.

Melissa

Monday, October 6, 2003 11:16 AM CDT

Hello,

Well it has been 8 days since I finished the Walt Disney World Triathlon with Team in Training (TNT). There were about 1500 people in the race, 500 of them here with TNT. As a group we raised over 1.7 million dollars to help fund research for a cure for Leukemia and Lymphoma. I cannot even express what an aweseome experience it was to cross the finish line with so many others who cared so much about people like my son. My goal was to finish in under 4 hours and my time was 3 hours and 38 minutes. I felt GREAT at the finish line and was able to join my other team mates that evening dancing the night away at the victory party. When I went into this I intended to do one event and be done for the rest of my life. Now I am seriously considering doing a number of triathlons next season ... I'd really like to do another TNT one, too (and maybe even a half-ironman???? -- I may seriously be getting crazy!).


I wrote a note thanking other participants and it was included in the packet of materials that was given to all of us when we checked in. It has Jonathan's picture with it, so now he says, "I'm famous again." My silent reply is "I wish you weren't famous for this."

Jonathan continues to do great. He had a check-up and chemo on Friday and everything looks good, although his ANC is still higher than they would like (completely normal, but it should be lower since he is on chemo).

Thanks for your continued prayers ... and thanks for your support for the Leukemia and Lymphoma Society.

Love, Melissa

Thursday, September 18, 2003 1:18 PM CDT

Hello,

I just got back from eating lunch with my boys. First I "enjoyed" a chef salad with Andrew and Caleb and then finished my sandwich and 1/2 banana and cookie with Jonathan. I love being in their school and meeting their new friends. They all seem to have a lot of neat kids in their class and the kids are all excited when I remember (or at least try to) their names. One little girl said, "how do you know me" and I told her that I met her the first day of school and remembered her beautiful brown eyes. She just beamed and then gave me a big hug. They all have very beautifully diverse classrooms ... the two girls sitting next to me in Jonathan's class were jabbering away in Spanish -- they laughed and laughed when I tried my few Spanish words out on them. Several others in his class are from Somalia and in school for the first time. I believe my kids are so lucky to be in classrooms like this.

Jonathan continues to do great with his maintenance chemo. To look at him, you would never know that he has/had a life threatening illness.

We just finished a bout of illness at our house with Andrew and Rachel spending the bulk of two days laying on the couch. All is well now and I hope the rest of us were spared.

I finished my first triathlon September 7. It was a WONDERFUL experience and I must say that I am now addicted to this sport. I finished 1/2 hour faster than I had expected which made me really happy. My team-in-training triathlon will be next Sunday the 28th in Orlando, FL. It is slightly longer than the one I did eariler this month, but it will also be significantly flatter (the one in Stillwater was one hill after the other). I'm pretty excited about it since I know there will be many others there with me swimming, biking, and running to help raise money to find a cure for leukemia.

That's all for now.

Love, Melissa

Friday, September 5, 2003 11:13 PM CDT

Hello,

First week of school is over! The boys love school and simply amaze me at how well they are adjusting to all the changes. Andrew and Caleb are separated for the first time and seem to be handling it much better than I am!!! Caleb has several kids in his class that he knew from preschool so that helps him ... I just wish Andrew had that. Andrew (mr friendly) doesn't seem to care ... he adores his teacher and loves to learn. He will be fine.

Jonathan is an "all-grown-up" first grader. He informed me Thursday when I was taking him to school after his chemo appointment that if I wanted to go into school with him I was to walk behind him and that I could not give him a hug or kiss!!!!! I didin't think this stuff was supposed to happen until the teen years! What is even more amazing is that this is from the kid who even on the last day of school last year would not walk to his classroom by himself. Oh, he's growing up too fast.

He has a few special friends in his class this year -- one I had prayed specifically would be in his class -- and the other is our next door neighbor's daughter who he played with alot this summer. He does miss his class from last year (they are scattered between 4 teachers and he only knew 3 kids in his new class). But he did tell me proudly today that he made 3 new friends.

His chemo appointment went very well on Thursday. His counts are still high, so they are increasing his chemo dosage. It was a really nice morning for both of us, we spent a lot of time talking ... it was a morning that I will treasure for a long time. He is such a precious gift from God. I am so lucky to be Jonathan, Andrew, Caleb, and Rachel's mom. Thank you God!

And thank you for your prayers over the past 2 years. Keep them coming. Few of you know the whole story -- how difficult things have been and how angry I have been with God, but you prayed ... my heart is now softening and I am beginning to believe again that I am OUTRAGOUSLY LOVED BY GOD (and so are you, by the way!)

Love, Melissa

Friday, August 22, 2003 12:37 AM CDT

Hello,

Well, hopefully most of you realize that no news is good news on this page. It has been way TOO long since I updated ... we have been so busy having a normal summer.

Jonathan and the twins learned how to swim in July and they have been enjoying being in the pool at Brit's almost every day. Rachel is keeping up pretty well with them with her "water wings" on. It just amazes me to watch them dive to the bottom of the pool to pick up something. These were the three boys who wouldn't even put their faces in the water in June. I can't tell you how nice it is to see Jonathan strong and healthy.

We are going up North next week for some R&R before school starts. The twins are so excited about starting Kindergarden. They have already met their teachers and seen their classrooms. Jonathan has been a big help to them telling them what to expect. I realized that it is going to be a big change for me to have the 3 of them in school. I was pretty active in Jonathan's class last year and knew all of his classmates. If I do that again this year I will have to learn the names of some 75 kids! We'll see how my memory is doing!

I realize that leukemia will always be a part of our life, but it is nice for the moment that it is not playing such an active role. Jonathan still takes pills every day, gets IV chemo once a month, and a spinal tap every 3 months (his next one is on the 3rd day of school) ... but at least for the moment it is not making him sick.

Our friend Noah finished up another high dose round of chemo last week and was doing really well for a few days. Now he is having awful headaches and some swelling around the brain that they have had to drain off. Pray for him and his family ... these are hard days for them.

My triathlon training is going pretty well. I've had a difficult time with the running portion of it and will probably end up walk/running it. This evening I will be going on a 3 hour bike ride (the longest ever). I haven't found anyone to go with me so it looks like I am on my own. The big day is September 28 in Orlando Flordia -- if any of you want to join my mom in cheering me on, please come! I'm also planning to do a shorter distance triathlon on September 7 in Stillwater, MN. Any and all spectators are welcome to watch me crawl across the finish line.

Well, that's all for now. I have to go consume some more calories (the absolute best part about long work-out days ... I'm already planning my post ride trip to Chipoltle)!!!!!

Love, Melissa

Monday, July 14, 2003 2:34 PM CDT

I came across this today and thought it summed up how I feel so well. I have been told so often how strong I am ... but in reality I am much more like the egg in this story. Maybe you know someone today who is facing something really tough ... please don't be afraid to let them know you that you care, TODAY. It will make their day!

The Strength of an Egg

Parents of children with cancer, or really any serious condition, are
often referred to or viewed as having strength "like a rock." Albeit
flattering, it isn't quite true. It is more like the strength of an egg.
An egg, you ask? Yes, an egg. If you think about an egg, you will see
the point I make.

An egg has a polished smooth outer appearance with no cracks or weak
spots visible. It seems almost inconceivable that the inside might not
be as smooth and solid as the outside. Most children, at some point in
their lifetime, are shown the famous egg trick. An egg set at just the
right angle can withstand enormous amounts of pressure and cannot be
cracked or broken. Yet that same egg, tapped gently at an even slightly
different angle will break. The contents, once so neatly concealed
inside, will come spilling out, and the no longer perfect shell will be
crushed. Then the shell looks so fragile that it seems inconceivable
that it ever held any strength.

That is where parents of children with cancer are more like eggs than
rocks. A rock is solid all the way through. If you tried to break a
rock, it would be almost impossible. If successful, one would find that
there was nothing inside but more rock. It takes a lot more than pure
hardness to hold the hand of hope. These parents are not solid all the
way through. They hurt, they fear, they cry, they hope. It takes a very
careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and
hospital stays, keeping the family together, and holding on to the
constantly unraveling ties of your sanity can be very tricky indeed.
Occasionally, the angle will be off and the shell will break, shattering
hope and the neatly secured appearances of a truly fragile existence.
Unlike Humpty Dumpty, though, parents of kids with cancer will pick
themselves up and put themselves back together again.

by Juliet Freitag

Saturday, July 12, 2003 11:07 PM CDT

It has been too long since I have updated! Jonathan continues to do really well on maintenance. His counts are great (actually a little on the high side) and his energy level is super. He is taking his daily oral chemo better than I had ever dreamed.

He did have an ear infection eariler this week, but it seems to have cleared up quickly.

The boys are all taking swimming lessons and playing t-ball. So far it has been a fun, busy summer ... such a change from last year.

I have been really enjoying my time training for the triathlon, especially the time spent on my bike. It has been very healing for me emotionally and spiritually. I'm really thankful that I have had the time, strength, and energy to do this.

Not much else to say right now, except thank you for your continued prayers ... You are being heard and answered!

Love, Melissa

Friday, June 13, 2003 2:46 PM CDT

Hello,

Jonathan's spinal tap went well, his counts are excellent. He had a lot of anxiety about going to sleep and getting his port accessed. He made it a little difficult for the nurses and doctors (and himself). He said on the way home that he wished he did not have leukemia which is the first time I've heard him say that. He is feeling so well that I imagine he is only reminded of it now once a month when he goes in to get his port accessed for IV chemo.

Today was a day of very mixed feelings for me. While Jonathan is doing great, one of his friends Noah found out today that he has relapsed. It was all I could do to keep from crying when I heard the news. This 7 year old boy looks so good. He wants to have fun and play outside this summer -- just like Jonathan. Now it looks like the family is looking at a long summer in and out of the hospital with an evenutal bone marrow transplant. It is so UNFAIR! I have a child with cancer, but I can't even imagine how Noah's mom and dad are able to handle this. What sadness! What anger! What frustration! What helplessness! Please pray for Noah and his mom and dad. And pray for wisdom for his doctors to determine a treatment plan that will destroy this leukemia once and for all.

After hearing this news, I am even more determined to raise funds for the Leukemia and Lymphoma Society. How wonderful it would be if we could find a cure for this brutal disease that takes years out of our children's lives! I was talking with Jonathan about this today, and he said, "But Mom, don't they already have a cure?" I had to tell him that some kids are cured, but some are not. Some have to go through much more chemo than he does and some do not make it. Some make it and then relapse, only to have to go through more YEARS of grueling chemo.

I can't go back to school right now and pursue a degree that would enable me to do medical research (which I would LOVE to do) -- but I can train for a triathlon with Tean in Training and hopefully raise funds and awareness for those who are search diligently for a cure.

Thank you for all of your prayers -- and I urge you today to pray for Noah. Pray for his healing. Pray for his family. And pray that we would one day see an end to this disease.

Love, Melissa

Wednesday, June 11, 2003 9:46 PM CDT

Jonathan goes in for chemo on Friday. He will have a spinal tap to get chemo in his spinal fluid as well as start another pulse of decadron and an IV push of Vincristine. It has been 3 months since his last spinal tap. He has done very well with these in the past and hopefully Friday will not be any different.

My training for the triathlon is going well. I've discovered that I enjoy swimming and biking, but am not a great runner. Hopefully as I do more of it I will find something to enjoy about it! No matter what I realize that I will have to be thinking about Jonathan and the other kids I know with cancer during the run part just to be able to complete it.

I just got the children put to bed ... Jonathan was having a difficult time falling asleep and I was able to take the time to do that wonderful parent thing ... rub his head until he fell asleep. It was so peaceful and his hair is so baby soft. I realized that as my children have been getting older that I rarely take the time to do things like this anymore. I loved watching the look on his face as he slowly drifted off to sleep.

Tonight was special for me as I saw my children again for what they are ... a Precious Gift from God. It seems that in the craziness of this past year I had forgotten that. They are learning new things everyday and I NEED TO SLOW DOWN and learn and explore with them.

Thank you God for showing me this in such a vivid special way tonight.

And thank to all of you who have been praying for me and the rest of our family.

Love, Melissa

Wednesday, May 28, 2003 10:11 PM CDT

Hello,

Today the boys learned how to ride their bikes without training wheels!!!!!!!

What a milestone for them ... I wished that I had my camera to capture Jonathan's face as he caught on so quickly. He was riding by himself in under a minute. He kept grinning and saying, "I didn't know I had it in me."

I, of course, had no doubt that he had it in him. He has done so much this past year and I am SO proud of him!!!

The twins also picked up the biking thing pretty quickly and we are now looking forward to a ride on a bike trail near our home.

Jonathan is still really healthly and most days it is difficult to believe how sick he was last year at this time. I realized a few days ago that we didn't do much of anything last summer because we couldn't make plans. I'm really hoping that this summer will be different.

Well, I'm smiling along with my kids tonight.

Love, Melissa

Friday, May 16, 2003 3:32 PM CDT

Hello,

Jonathan is still doing really well -- and taking his meds better than I ever dreamed. Last night I forgot about his meds and he reminded me!

I have decided to train for a triathlon with Team in Training (a Division of the Leukemia and Lymphoma Society). I'll write more about this later, but it is something that I've wanted to do since he was diagnosed. I am so excited to train for an endurance event and raise money for them in honor of Jonathan. You can check out my web site for this here. I'll write more later.

Love, Melissa

Wednesday, April 30, 2003 3:07 PM CDT

Hello,

I thought we had escaped the cold/flu season here at the Lindsey house, but I guess it just decided to come later this year. Caleb has been coughing and complaining of a headache for the past 3 days. One night it was so bad I had to give him a neubulizer treatment to get him to stop. When I woke up this morning, he was lying on the sofa and looked just like Jonathan did right before his diagnosis. He was so pale and lethargic. Didn't want to eat, could hardly move. My heart just got sick -- I called our doctor this morning and she saw him at 11:30. After a chest x-ray, CBC, and RSV test we have determined that he just has a mild case of pneonomia. Much better than the leukemia that I was so worried about.

Fortunately our doctor is just wonderful, her own son had ALL 13 years ago and so she knows how us parents feel! It took me a long time to find a doctor that we really liked and trusted here in St. Cloud (who could beat Dr. Muhlenberg from PA? -- one of the best around) -- but I would say we have found someone just as knowledgeable, kind, and compassionate. Brit called me while I was at the doctor's office to say that Andrew was wheezing, so she send medicine home for him, too. Thanks Dr. Melloy!

Caleb did wonderful during the blood draw and RSV test. He didn't complain at all when they pricked or blew saline solution in his nose. He is my very brave son -- he loves to look at me and say, "Mom, my name means brave."

Well, that's a day in our life. I guess my kids can never just be sick in my mind anymore -- I wonder if I will ever stop thinking that someone else in this family is going to have cancer, too.

Jonathan continues to do well on maintenance, he was off chemo for a week and is now back on half dose. We go in for blood counts tomorrow to see if we can bump him back up to the full dose of chemo. He is busy preparing for the kindergarden play on Monday. They are doing Peter Rabbit and he is playing the part of Flopsy. Everyday he comes home talking about it, we all can't wait to see it.

Thanks for your prayers for our family.

Love, Melissa

Friday, April 18, 2003 3:38 PM CDT

Hello,

Well, life is never predictable when you have a child with cancer.

We went to the cities to get chemo yesterday -- Jonathan got vincristine and blood counts. We found out that his blood counts were very low so we are now holding his oral chemo for the next week.

Then, we got home and had to cancel our trip to visit my grandmother as Jonathan spent last night in the ER with a fever, cough, and painful urination. He was given the typical blood culture, chest x-ray, and antibiotic. He also went home on an oral antibiotic to see if that might prevent any further trips to the ER -- this was our 3rd in 8 days!

We met another family in the ER last night -- Noah has leukemia and is 6 like Jonathan. It was nice for both of them to see someone their own age battling this awful cancer. They can understand the yuckiness of taking the medicines, of feeling sick, of spending time in the hosptial, of being poked, of missing school, of feeling tired, and just the general uncertainty of life.

Thanks for your prayers.

Love, Melissa

Monday, April 14, 2003 1:19 PM CDT

Hello,

Last week was a long week. Jonathan and I spent both Monday and Wednesday nights in the ER. He's doing fine now, except for the cough. He is starting to show signs of easy brusing, but I'm not sure yet if it is from low platlets or just from being outside all the time. We'll be keeping an eye on that. Jonathan will be going in for chemo on Thursday and then the kids and I are planning to go visit my grandmother in Missouri for Easter.

My back is still giving me lots of problems -- some days are better than others and thankfully walking really helps, so I have been doing lots of that. I did a 6 mile March of Dimes Walk on Saturday with a friend whose nephew was born 2 months early. It continues to amaze me the medical progress that has been made for our kids. Many children who would normally die are living long, full lives. I am reminded of this as I plan to visit my grandmother whose daughter died of the same cancer Jonathan has -- over 50 years ago leukemia was a certain death sentence.

That's all for now.

Love, Melissa

Wednesday, April 9, 2003 11:46 AM CDT

Hello,

This has been a tough week. We had a big ice storm here last Thursday and as I ran out the back door to chase our cat I slipped and fell. My back was already sore, but this did not do much to improve things. I've basically been in some form of pain or discomfort since. The children have all developed colds with lots of night coughing -- so no one is sleeping all that well.

Jonathan and I spent Monday night at the ER in St. Cloud while we did the typical routine for a fever. This includes blood counts, a blood culture, and a dose of antibiotics. Brit came at 11pm to relieve me as my back was hurting so bad (the chairs in the rooms are NOT comfortable!)

I read a letter this morning from one of Brit's relative's whose husband is battling cancer. She said something in there that has got me thinking new thoughts about this past week -- actually about the past year or so and I wanted to share them with you.

"Every experience God gives us, every person he puts in our lives, is the perfect preparation for the future that only he can see. I don't always see a 'future' ahead and sometimes can't see what good will ever come out of this. IT'S NOT A QUESTION OF SINGING/PRAYING/READING AROUND HURT AND GRIEF AS A CHRISTIAN - WE HAVE TO GO THROUGH IT AND THAT'S SCARY."

Thank you Jeri for your words -- I needed to be reminded of that future that ONLY GOD CAN SEE, especially when I am hurt, sad, and scared.

Thanks again for your prayers, hugs, and words of encouragement.

Love, Melissa

Wednesday, March 26, 2003 11:17 AM CST

Hello,

Jonathan started Maintenance last Friday. So far the pill taking routine has gone much better than I expected. We are still crushing them and putting it in orange sherbert -- but it no longer takes 1/2 to get the meds down him. His anxiety level about taking it has gone way down. Thanks for your prayers -- now we need to pray that he will be able to swallow the pills.

He just finished a 5 day pulse of steroids. We had a few really crabby days and lots of hungry days. He has started waking up at 5:30 and making and eating 3 packages of Ramen Noodles.

He and the other kids are doing really good. I was thinking yesterday that this is the first winter since the twins were born that the whole family didn't come down with the flu. We are very thankful for this.

Andrew and Caleb are learning their letters in school and Caleb can write his name really well. They both love to draw and to show off their new phonics and math skills. "Mom, guess how much 2+2 is" is a common phrase in our home. I think by now even Rachel knows the answer to this! Rachel is talking up a storm and always in the middle of anything the boys are doing. Jonathan has learned to tie his shoes -- He is so very proud.

That's all the news for now.

Love, Melissa

Thursday, March 6, 2003 10:13 AM CST

Hello,

Well, Jonathan has offically finished Delayed Intensification II!! We sent last Sunday in the ER in St. Cloud has Jonathan had a fever and a sore ear. His counts were really low, but since the doctors expected them to go up anyday, they allowed us to go home. He's on an antibiotic for an ear infection, but otherwise is doing great. He went to school today for the first time in a week ... when I left him he was having a great time working at the woodworking bench they had just set up. It was fun to watch him hammering and sawing away like any other kid.

So, what's next for Jonathan? He will start Long Term Maintenance as soon as his counts recover. This will involve daily oral chemo, weekly oral chemo, 5 day pulses of a steriod every month, monthly IV chemo, and a spinal tap once every 3 months. We will continue this until April 30, 2005! His hair should grow back soon and he should have more energy again. We are going to start an all out effort to teach him how to swallow pills as med time is still a nightmare for all of us.

Thanks again for all of your prayers. A year ago I never thought that we would make it through all of this. I know your prayers have made and continue to make a difference.

Love, Melissa

Thursday, February 20, 2003 4:09 PM CST

We went down for Chemo yesterday ... Jonathan's last Peg shots, so he was pretty happy about that! I decided to take all the kids and then have a celebration lunch somewhere in the cities, but found out that Jonathan's body had another plan for us. We ended up spending 6 hours at the hosptial while Jonathan got a blood transfusion. As I was watching the 3 boys RUN to McDonalds on the other side of the hospital I was wondering why he needed the blood, his energy level sure was good ... but his Hemoglobin was only 6.7 ... if that was me I don't think I could get out of bed.

The doctor told us yesterday that Jonathan will officially be done with chemo on April 30, 2005! Just a little more than two years to go. It seems like we have been doing this forever and is strange to think that we are almost done with the rough months. Pretty soon we will start maintenance which is a three month cycle of chemo that we will keep repeating until the end of April 2005.

He's doing really well with this delayed intensification phase -- with chicken pox, strep throat, and all kinds of respritory things going around he's only had a slight cold all winter. Actually our whole family has been very healthy this winter, which is kind of a strange for us. I sure hope it stays that way!

Well, I'm nursing a sore back (again) that makes sitting very uncomfortable so I'd best get off this chair and go lay down for a bit. Thanks for your continued prayers.

Love, Melissa

Tuesday, January 28, 2003 at 12:53 PM (CST)

Hello,

Thank you Brit for your wonderful entry. You are a great dad!

Jonathan and I went to the cities last night in preparation for a spinal tap and chemo to start the second portion of his Delayed Intensification. Brit had taken him to CentraCare in St. Cloud yesterday morning to make sure his counts were high enough to have the next treatment. They were ... until this morning when they rechecked them as they had dropped dramatically! He also had a cough and so they decided not to do the treatment as planned, but wait and check next week to see if he is ready. Delays like this are not uncommon -- I just wish that his counts had dropped yesterday so we would not have had the extra trip to Minneapolis. Jonathan and I did have a wonderful talk on the way down last night, so I guess I would say it was worth it just for that conversation. He is such a precious kid and what a thinker! He was asking me questions that simply amazed me. How does he know so much????

It was snowing (finally!) on the way home and we saw a number of accidents, but thankfully we made it home alright. The rest of the family is doing well. Thanks for your continued prayers -- I know some of you still pray everyday for Jonathan and our family and we REALLY appreciate it.

Love, Melissa

Saturday, January 18, 2003 at 11:05 AM (CST)

Hello,

This is my first entry as Jonathan's dad. His mom and I have been seperated for over a year and for various reasons I have kept silent on this board. Melissa has done a very commendable job keeping you all updated on Jonathan's condition.

This past year I have had the privilege of caring for Jonathan and his two brothers and sister during the work week, and then every other weekend they stay at my apartment. Jonathan's Leukemia has brought our family closer together. I spend more time with my children and treasure all the little events in their lives. When Cancer enters a family, things change as you can all understand. You think about life without the loved one, you weep, you cut out some of the busyness of life to enjoy the small precious events, you confide in others, and you pray.

I hope to launch another small business this Spring, which will end the stay-at-home-dad chapter of my life. You might think I am crazy when I tell you I will greatly miss caring for my children each day. I won't miss the diapers, disciplining and trying to figure out what to cook, but there is so much that happpens daily in their lives that I will truly miss. It will be very difficult adjusting from being with my four children all day to seeing them infrequently.

I am truly amazed at Jonathan's attitude to his Leukemia and its effects on his lifestyle. He has created a unique relationship with his physicians and other caretakers both here in Saint Cloud and in Minneapolis due to his humor and bold questioning. I take him often for his medical visits and I almost find it entertaining to watch his personality at work.

Melissa's words are so true when she writes of the lack of sleep, the mood swings Jonathan has, the challenges we face each time he has to take his awful medicine, the medical trips which are so frequent, etc. And this is magnified with three other little ones craving attention, and parents who are separated. I want to thank each one of you for your prayers and support in so many ways. Just visiting this site and dropping a line or two does more than you can imagine. You're our cheerleaders helping us through.

As I close my first entry I'd like to just say that my four children are so blessed in having such a loving devoted mother as they have in Melissa.

with thanks,
Brit

Thursday, January 16, 2003 at 03:31 PM (CST)

Hello,

Two entries in one week! I've been staying home with Jonathan most of this week as he has not been feeling well. He couldn't get up on Tuesday and spend almost all of the day on the couch. He didn't eat or drink much. He was complaining of sore throat and stomach ache as well. We had a birthday party planned that evening for Andrew and Caleb that I decided to have anyway (it was family) since they had been looking forward to it for almost a month. Just before we had cake, Jonathan asked if he could go to bed. When I tucked him in, I noticed that he felt a little hot, so I took him temp. It was 101.6, so I called the doctor who told us to go to the ER in St. Cloud. Once there they gave him a dose of Rocephin (an antibiotic), drew blood cultures, and gave him fluid. He was very dehydrated as once he got that fluid in him he really perked up. He even asked for something to eat. We got home at 11:30 pm and I made him waffles and strawberries, and pretzels. (Now, that's my steroid boy!!)

He slept in on Wednesday and then went back to sleep for most of the morning. He was up playing with his brothers all afternoon and then went to bed around 6:00. He did wake up at 2 am hungry, so i made a snack and he watched cartoons for a little bit. It was really a bad sleep night for me as all the kids were up and down. I slept part of the night in Jonathan's bed, part of it on the couch, and part of it in my bed with the twins and Rachel! I'm not looking forward to a repeat of that as I am exhausted today.

We kept him home from school again this morning as his counts are really low and he is having some diarhea. He took a long nap this afternoon.

It is amazing to me how quickly I had forgotten about the rougher months of chemo. He's been through this before, but somehow I had forgotten what it was like to be the mother of a tired, crabby, sick child. I'd say I feel pretty much the same way as Jonathan does -- only my sickness is about Leukemia and how it affects the lifes of children I know and love.

We love to talk about the high "cure" rate of leukemia ... and at times I have heard people say, "oh, you are lucky its ALL ... that is cureable". But you know -- it is robbing my son of the joys of kindergarden. It may leave lasting effects on his body and emotions. It will leave lasting effects on our family. Yes, I am happy that there is a great chance of a long life for Jonathan ... but I wouldn't wish this journey on anyone. I've met a number of people whose children who have died and I can't even begin to understand how hard it is for them to have watched their children fight cancer and find their cure in death.

Please support childhood cancer reseach. I've said it before -- 50 years ago my aunt had leukemia and it was assumed that she would die. Now most ALL leukemia patiences have an 85% cure rate. This came through research, lots of it! As a mother I would like to see this number rise to 100% or even to find a preventative for it in the first place. I'd also love to see the cure rates go up for Neuroblastoma, the AML form of leukemia, Wilm's Tumors, Bone Cancers, Brain tumors, and the other forms of cancer that commonly hit children.

Praying and working for a cure,

Love Melissa

Tuesday, January 14, 2003 at 01:45 PM (CST)

Hello,

Sorry -- once again it has been way too long since I have updated this. Jonathan has just started his 3rd week of Delayed Intensification. He is starting to get really tired and crabby. He didn't sleep well last night, so he stayed home from school today and slept most of the morning. When he wasn't sleeping, he was crying about being in pain. He is loosing his hair again and that seems to itch alot which he describes as pain. He is also complaining of stomach pain. He started a pulse of decadron (a steroid) yesterday and these are all common side effects of high dose steroids.

Well -- that's all for now. The rest of the kids are doing well. The twins turned 5 on Saturday! I'll try to update more often now.

Love, Melissa

Friday, December 06, 2002 at 10:18 AM (CST)

Hello,

Yes, no news is good news. Sorry I haven't written for so long. It has been a long hard month for me personally -- but Jonathan has been doing great! It was fun to watch him turn six -- one of his chemo angels sent hats, balloons, plates, decorations, candles, and more for a great birthday party. It was so nice as I did not have the energy to shop! I actually had tears of joy when I opened her box and saw her thoughtfulness. We have met so many wonderful people through Jonathan's bout with cancer and we have seen the generous side of our friends and people we have never met in so many ways. You all know who you are -- and THANKS just does not do justice for the gratitude we all feel for the love you have shown Jonathan and the rest of the family.

Jonathan finished up the last dose of Interim Maintenance II chemo with no problems -- so now we have a break until after Christmas when he will start Delayed Intensification II. He did really well with his last round of DI, but I am more concerned this time as it is cold and flu season. Well, we'll just have to see how he does.

That's all for now, I'll try to stop by here more often and write. Thanks to all of you who so faithfully stop by, even when there is no news!

Love, Melissa

Thursday, November 07, 2002 at 02:52 PM (CST)

Hello,

Not much new to report -- Jonathan continues to do well, although he does have a pretty nasty sounding cough and seems to tire easily. The doctor thought that he may have a problem hearing the last time we were there, so he is going to get tested on November 14. I don't really think there is a problem, but it will be good to have it checked out anyway.

He turns 6 next week (November 12) so we are gearing up for the big day ... he's been counting down for a long time. It's hard to believe that I will no longer have 4 kids 5 and under -- of course it was much more fun to say that I had 4 under 4! Now they are all growing up and getting so independent! They boys have really started noticing that Rachel is a person and often include her in their playing. They have all been very fun to watch the past few weeks.

Thank you so much for your prayers and love,

Melissa

Thursday, October 31, 2002 at 08:24 AM (CST)

Hello,

Jonathan is doing really well. He was able to start Interim Maintenance II last Thursday. Basically that means that he will have chemo once every 10 days for the next two months. It is a lighter phase, although mouth sores can become a big problem. So far we have escaped these. Next chemo date will be Monday November 4.

I've been reading my guest book entries and noticed that some of the fourth graders that I teach at Church have been signing it. These are a great bunch of girls. I was with them last night after several weeks of being gone and every single one of them asked not only how Jonathan was doing, but also how I was doing. They assured me of their prayers and gave lots of hugs. These are 10 year old girls!! I have been so blessed by them.

I have been absolutely amazed by the faithfulness of young people in praying for Jonathan. I hear from parents all the time that their sons or daughters don't let a meal or bedtime pass without praying for him. We are very touched by this. I actually want to thank all of you, many of you I've never even met, who pray for Jonathan, our family, and other kids with cancer. You are doing a job that is sometimes very difficult for us ... but so absolutely necessary. This has not been an easy journey, but I have no doubt that God has answered your prayers as he leads us through the darkest times. Thank you!!!!!

Love, Melissa

Friday, October 18, 2002 at 11:37 AM (CDT)

Hello,

Well, things rarely go as planned in our lives. Brit took Jonathan and the other three kids to his 7:30 am appointment yesterday (they had to leave at 5:30) only to find out that Jonathan's counts are too low to start chemo. They were just seconds away from putting him alseep to give him the spinal tap when the nurse came running in saying, "STOP! He can't have it." His ANC which was over 2000 on Monday is now down to 500. He needed an ANC of over 750 in order to start the next phase. So we will wait another week to see if his counts have recovered enough to try again.

Wonderful Friends
At the risk of forgetting someone, I want to use some space here to specifically thank people who have been and continue to be a support to us. Today will be Sue Arvan.

The kids are planning to go to a pumpkin patch tomorrow with Miss Susan and Bethany. Miss Susan was Jonathan's preschool teacher and is Andrew & Caleb's teacher this year. Bethany is her daughter and a wonderful babysitter and power book lister (she recently started working for me in the book business). The kids are so excited to spend time with them. Sue took care of the twins for several weeks when Jonathan first got sick and they all grew rather attached to each other. She actually took care of me alot during those first few weeks, too! We all love Miss Susan very much.

Love, Melissa

Wednesday, October 16, 2002 at 02:18 PM (CDT)

Hello,

We came home from the hospital last Thursday. Jonathan was sent home on an antibiotic and the G-CSF. By Monday his blood counts were almost normal! He's off the the antibiotic and the G-CSF and we will start a new round of chemo tomorrow. He's starting Interim Maintenance II. Tomorrow he will get a spinal tap and Friday we have to go back down to the cities for the dreaded leg shots. This round of chemo is supposed to easier than the last, but we'll see. He is on escalating doses of Methotrexate which means each dose is higher than the last. Some kids don't tolerate this very well -- mouth sores are the most common side effect.

His teacher will be coming to the house today to do some home tutoring to keep him caught up with his class. She also came on Monday. I couldn't ask for a better kindergarden teacher for him. She's now added to my long list of people who have been a tremdous help to our family. Thanks Mrs. Moilanen!

I'm still working on getting caught up -- being away from home for 5 days unexpectedly is pretty tough for me. The feeling of being overwhelmed is slowly leaving. Thanks dear friends for all the meals!

We finally have things under control at work ... now I just have to do the same thing at home. It is supposed to SNOW here in Minnesota this evening. I don't exactly like snow, but I'm hoping it will stick as I would welcome the excuse to not rake the leaves that have fallen off our Oak trees (most of them are actually still on the trees).

That's all the news for now,

Melissa

Thursday, October 10, 2002 at 10:22 AM (CDT)

Hello,

We are still in the hospital. They are having a difficult time determining the type of bacteria in his blood and they don't want us to leave until they make sure we are getting the correct antibiotic.

His blood counts are finally going up thanks to the help of a special hormone (G-CSF) that he gets through his port. If he goes home on this, it may be in the form of a shot (yikes!). We'll see once we finally get the good news that we can go home.

Jonathan is loving his time here...he loves all the extra attention. He has had a volunteer come every day to play with him. It is nice to have a short break each day.

Well, that's all for now.

Love, Melissa

Monday, October 07, 2002 at 11:26 AM (CDT)

Hello,

Last night we found out that one of Jonathan's blood cultures is growing bacteria. This could be the result of an infection or a contamination in the lab. They have drawn another culture to confirm this one. He continues to be on high doses of antibiotics.

He's actually doing very well and to look at him you wouldn't suspect that he is sick. He did throw up last night ... but it was just one time and he slept through the rest of the night ... and he ate breakfast this morning. I taught him how to play checkers, so that is his new favorite game. He seems to be enjoying his hospital stay, but I am ready to go home. I really miss the other kids and am feeling very overwhelmed at the work that is piling up in my absence. I'm not sure how I am going to juggle the desire I have to stay home and play with my kids all day with the need to pay our bills and thus be at work. Please pray for me. When people first hear that we have four kids under 6, one with cancer, and a business to run they often say, "oh, you must be busy." Most of the time I just laugh, but today these things seem impossible to handle and I just want to cry.

Small problems, I know, in light of other families on the cancer ward here at Children's. I realize it could be much worse, but that's not giving me much hope at the moment.

Thanks for your prayers -- both for Jonathan and our family.

Love, Melissa

Sunday, October 06, 2002 at 02:22 PM (CDT)

Hello from Children's Hosptial in Minneapolis. Jonathan was admitted last night with a fever and very low blood counts. They have done two blood cultures now, but so far nothing is growing. His ANC today was 0 -- which is his ability to fight infection. We are in isolation, but Jonathan is allowed out of his room if he wears a mask.

Not much news other than that -- I will keep you posted.

Love, Melissa

Thursday, October 03, 2002 at 02:25 PM (CDT)

Hello,

The Good News

Childhood cancer has been called the "modern medical miracle" because such remarkable progress has been made in curing infants, children, teenagers, and young adults with cancer."

The Bad News

"Today, despite amazing research progress, cancer still kills more children than any other disease. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and AIDS combined."

I was reading the above facts today and thought I would share them with you. Many of you may not know that my father's sister died of leukemia when she was 4 years old. I never really understood much about leukemia and of course never thought any of my children would ever get cancer. It is amazing to think that my own grandmother lost a child to this disease. It was expected that she would die. Just 40 years ago Leukemia was a death sentence ... and now Jonathan's form of leukemia has an 85% cure rate! What an amazing thing -- and yet at the same time I have a friend whose wonderful daughter died this May from Neuroblastoma. I've been thinking alot lately about wanting to do more in the area of childhood cancer research -- including having dreams of going back to school. We'll see.

Anyway, just wanted to share with you what Jonathan's mom is thinking about these days.

Love to you all,
Melissa

(facts from the National Childhood Cancer Foundation -- www.nccf.org)

Wednesday, October 02, 2002 at 03:51 PM (CDT)

Hello,

Just wanted to give a quick update -- Jonathan had to get platlets yesterday. He woke up early Tuesday morning and he threw up a few times so he stayed home from school. As he was getting dressed I noticed several HUGE bruises and lots of little red bumps (they have a name that I can't spell!). I called the clinic and asked if we could have his blood counts checked. His platlets were at 8,000 (normal is over 150,000).

Hopefully his counts will start to go up now and we can enter Interim Maintaince II without any hospital stays.

Thanks for your prayers!

Love, Melissa

Monday, September 30, 2002 at 04:25 PM (CDT)

Hello,

Well, we made it through another rough weekend. I forgot to mention on Friday that Caleb threw up on the way to the clinic. Brit took him over to K-mart to buy a new outfit. I assumed that he was carsick because he immediately felt better. Now I wonder as I spent all day Sunday making a path between the bedroom and bathroom.

Jonathan added to his collection of bruises as well this weekend. His platlets are very low so even a minor bump leaves a big mark. He has a huge bruise on his forehead, one on the back of his head, several on his legs and arms. Otherwise he seems to be feeling fine. We have just one more dose of vincristine and then we will have finished our first Delayed Intensification. Six months ago I never thought we would make it this far ...

I want to thank a whole bunch of people right now for their help and support. We are very ordinary people who thought that cancer happened to other people's families. We never thought that childhood cancer was something that would directly affect our lives.

I don't know where we would be right now without you. You've provided meals, a shoulder to cry on, a listening ear, watched the kids, wrapped books, took books to the post office, helped us move the business, called to make sure we were okay, visited us in the hosptial, sent books, puzzles, and games for Jonathan and the other kids, sent cards, gave money, took us out to eat, prayed for us and asked other people to pray for us, made us laugh, connected us with other families with children who have cancer, and helped strengthen our walks with God.

We still have a long way to go ... but I want you to know that we so very much love and appreciate you.

Love, Melissa

Friday, September 27, 2002 at 06:59 PM (CDT)

Hello,

I'm writing to you from the Family Resource Center at Children's Hospital in Minneapolis. We brought Jonathan down for regularly scheduled chemo today and he ended up needing a blood transfusion as his hemoglobin was very low. I didn't really expect this and so we brought all the kids, thinking that we could spend some time in the cities as a family. Well, tonight I am very thankful for the sibling play area where Andrew, Caleb, and Rachel have been able to play for several hours. They have great toys, lots of room to run, and wonderful people to watch over them. The six of us had supper in Jonathan's room -- I went out to Falafel King and got some middle eastern food ... that's how I made lemonaid aid out of the lemons. Hopefully he will be able to leave later this evening.

Jonathan has been doing very well. Dr. Nelson saw him today and was so pleased with the way he is handling everything. He commented that he seems like a different kid then he did 6 weeks ago. I would agree. He is cheerful, full of energy and excitement ... back to his old self in many ways. It has been a good month for him and we are so very thankful.

Brit just came and told me that Jonathan is done with the transfusion, so we are out of here!

I want to write more later on what the last six months have been like for our family and how we have survived. I met a family today who just received news that their daughter has a tumor. As I looked at them and that little girl I couldn't keep the tears back. I well remember the shock, disbelief, and pain of February 20, Jonathan's date of diagnosis. If you think of it, say a prayer for this family. I don't even know their names and may not see them again, but I won't ever forget the look on their faces. I am sure that I looked very much the same way for a long time after learning of Jonathan's illness.

Thanks for your prayers, your kind words, your help. We couldn't do this without you.

Love, Melissa

Wednesday, September 11, 2002 at 04:21 PM (CDT)

Two big pieces of news today -- first, Jonathan's counts are high enough that he will indeed get chemo on Friday. He will be starting a very intense phase including the chemo that caused all the problems with his bladder last time. We would appreciate your prayers that the additional precautions that the doctor is taking this time will prevent irritation. He will be on fluids for 24 hours after receiving the cytoxin and then every evening for an additional 4 days. He will also receive a medicine called Messna which will coat the bladder.

Jonathan continues to love school. Yesterday the nurse came in and talked to his class about leukemia. He was able to show them his port, his pill crusher, and tell them the story of when I shot heprin all over the ceiling. His nurse demonstrated with a syringe full of water. It must have been a hit because one of his classmates today said to me, "you're the one who put water on the ceiling, aren't you!" I really like his teacher and fellow classmates. School is going much better than I had expected. He seems to fit in just fine -- bald head and all. In fact, he told me a few days ago that he didn't like hair and that when it grows back can we shave his head again? Oh, Jonathan, we love you so much!

The other news is that my back has gone out -- again! I was walking up the stairs on Sunday when that familiar feeling of intense pain hit me and suddenly I was unable to move. I was in bed for a little over a day and am slowly increasing my strength and mobility. Brit has been very helpful with watching the kids, making meals, cleaning, etc. He's done more than his fair share these past few days. We are still trying to decide who should take Jonathan to his appointment in the cities on Friday as I can't sit for very long ... but I also can't lift Rachel so it would be difficult for me to be with her all day.

I opted to go to a physical therapist this time as the pain is more in my legs than it usually is and I am so weak. I went today and it looks like I will be going a few times a week for the next month -- Yeah, another thing to cram into our already busy schedule. The therapist actually said that with the stress I've been under for the past year that the best treatment would be a week in the Caymens! I heartily agree, but don't see it happening anytime soon. She also said no more carrying boxes of books so it looks like I am going to have to look for someone to take over that job!

Thanks for your prayers!

Melissa

Saturday, September 07, 2002 at 06:35 PM (CDT)

Hello,

Just got back from Sears where we had the kids photos taken for the first time since Rachel was born! I hope they don't hate me for not taking more portraits of them when they were small. I already regret not having a camera these past 2 years and went out and bought one today. Time to start capturing these memories. Hey, I might even start scrapbooking (Marcia, stop laughing!)

Things are still going well with Jonathan. If his counts recover, he will go back in for chemo next Friday. Right now he is holding his own and feeling rather proud of himself that he is now a kindergardner and goes to school every day!

That's all for now. Thanks for your prayers!

Love, Melissa

Thursday, September 05, 2002 at 11:06 AM (CDT)

Well, Jonathan's first day of school went off with a BANG! Or should I say with a fever!!!! He loves school, talked about it nonstop with me once I got home, but I noticed that he felt really warm. Sure enough, his temperature was 101.6 which is just over the limit when his counts are really low. We ended spending most of last night in ER with him while he had a chest x-ray, blood drawn, and an antibiotic. They weren't able to see any obvious signs of infection and since his fever went down after we got there we were able to go home. He woke up this morning with no fever and aching to go to school. We finally decided that we would let him go. I'm hoping that school might actually be one of the best medicines for him as it will take his mind off all the bad stuff he has to go through. It's neat to see him so eager to learn and finding so much enjoyment in something.

His counts are just low enough that they will not give him chemo this week. This was somewhat expected -- we'll likely be back on track in a week or two. I'm not looking forward to the next phase at all as it starts with the medicine (Cytoxian) that caused so many problems with his bladder last time.

Thanks for your prayers for him and our family.

Love, Melissa

Wednesday, August 28, 2002 at 10:57 PM (CDT)

Hello,

Well, the medicine taking has been going much better this week. We haven't had any more sucess in swallowing skittles or anything else ... but he is taking his decadron smashed up in ice cream with minimal gagging. I'm pleased and we will keep working on the swallowing.

We are gearing up for school here -- Jonathan is so excited. I had a conference with his teacher yesterday and we talked about some of the challenges that Jonathan will face in school. She seems to be a very good teacher and I think we will be able to work together well. We also met the the school nurse this evening and she was very helpful.

He tires easily and some days takes both a morning and afternoon nap, but other than that he is doing very well.
So far he is doing much better than I had expected.

That's all for now. Thanks for your prayers!

Love, Melissa

Friday, August 23, 2002 at 10:17 AM (CDT)

The big news for today is that Jonathan is on his way to finally swallowing pills. He swallowed several pill sized pieces of skittles today with the psychologist at the hospital and he is so proud of himself! He is so eager to do this and to get on to swallowing the pills. Hopefully that will be very soon!

We are waiting to get chemo, Jonathan is playing in the sibling play area and I am in the family resource center trying to wake up. These early morning trips to Minneapolis are starting to wear me out! It was all I could do to stay awake on the drive here this morning. I'm hoping we get home early enough today so that I can take a nap, either that or go for a long walk. I love the cool weather we have been experiencing here in Minnesota the past week or so.

I'll update more after his chemo if there is anything significant, otherwise I hope the next time I write I'm writing to tell you that Jonathan is swallowing his meds.

Thanks for your love and prayers.

Love, Melissa

Tuesday, August 20, 2002 at 04:08 PM (CDT)

Hello,

Jonathan continues to amaze me at how well he is doing. This weekend we took the kids swimming and all of them put their heads under the water! My last trip to the pool was a complete disaster with none of them even wanting to get in, but this was so different. Andrew, Caleb, and Rachel had on water wings and even Rachel wanted to go off by herself. Caleb surprised us all by jumping in unassisted! Looks like it might be time for swimming lessons.

Jonathan is off decadron for the week, but he continues to have a huge appetite. He has another loose tooth -- and is anxiously awaiting another $1 under his pillow. He has his own room now and a new bed that Aunt Judy found for him. We came home Saturday evening to find his bed set up with a new comforter, sheets, and even a border on the wall. THANK YOU JUDY!!!!! He loves his room.

I noticed that he seemed to be getting a cold last night ... it's strange how that thought affects me. I used to be so causal about my children's illnesses -- now, especially with Jonathan, I monitor every sneeze. Hopefully it won't turn into anything more serious, he is so looking forward to starting school. We will all be really sad if he ends up spending the first few weeks of school at home or in the hospital.

Thanks for your continued prayers.

Love, Melissa

Wednesday, August 14, 2002 at 04:23 PM (CDT)

Hello,

We had a wonderful bike ride last night. Rachel in her little seat on my bike and the twins and Jonathan racing along. We rode over to my friend Marcia's house -- she has just had a baby and the kids were facinated to see that "the baby came out!" He was a little crabby and they kept telling me to stop hurting him -- that he didn't like the way I was holding him.

It was a long ride home -- about 1/3 of the way back I had to call Brit and ask him to pick up Jonathan and Rachel who were both pretty tired out. Andrew, Caleb and I raced home. They both fell off their bikes at the exact time. Another strange twin thing???? They were good about getting back on and we got home a little before dark. It was pretty easy to get every one to bed last night, including me!

Jonathan continues to take his medication, altough he has a lot of anxiety about it. I admire his courage -- he's a brave little kid!

Tonight we'll go to grandma's house for taco salad (we might have to put some salmon in Jonathan's to get him to eat it!) and then we'll probably play soccer in her nice flat yard. For those of you who have not been to our house, we live on the top of what is affectionately known as Mt. Everest. Big hill in front, big hill in back! Nice for sledding, not so nice for playing ball!

Love, Melissa

Tuesday, August 13, 2002 at 10:36 AM (CDT)

Hello,

Jonathan went for his PEG-Aspariginase yesterday which is a shot in each leg. He continues to feel pretty good. He was really tired last night, but he is not nearly as moody as he was the last time he was on Decadron. He has food cravings (right now its salmon, day and night). He's so cute, he comes to me almost a little embarressed and says, "Mom, I can't stop thinking about something." And then I guess, "Salmon?" and then he breaks into a big smile.

Well, that's all the news for now. I'm hoping he will feel well enough to go for a bike ride tonight. The twins are asking everyday to go.

Love, Melissa

Saturday, August 10, 2002 at 11:42 AM (CDT)

Hello,

Jonathan has started Delayed Intensification I. This is the phase that I have been dreading since the very beginning as the chemo that he will be taking is very strong and will likely wipe out his immune system while it is also killing any leftover leukemia cells.

He went in yesterday for a spinal tap, Vincristine, Doxorubician, and to start 7 days of Decadron. He also had a Pentamadine Neb since he is refusing to take his bactrium. This is a preventitive for a certain type of pneumonia. He did not like the breathing treatment at all -- it apparently tastes awful and causes your body to produce a lot of saliva. He was constantly spitting during the 20 minute treatment. I'm kind of hoping that he will decide that taking Bactrium is better than this ... but if not, at least we have a way to cover him against at least one form of pneumonia.

We were very pleased that Jonathan took his Decadron with no problems. We spent about 15 minutes trying to teach him to swallow some gel caps. He was very cooperative and tried so hard! We'll try again -- we finally ended up crushing the Decadron and putting it in chocolate ice cream. I was afraid he wouldn't take it because he throws up the ice cream when there is bactrium in it, but there were NO problems.

Well, the Decadron will make Jonathan really hungry again. He wanted to stop at a Middle Eastern grochery store on the way from the hospital. He wanted to buy some "wild" pickles from Lebanon. Yes, my children have my international taste buds! Then he wanted some Mountain Dew because he wanted to be "hyper" when he got home!

I really enjoyed this trip with him. We spent the night before his procedure at the Wassi center which is a hotel like place attached to the hospital. We read a number of books and he is getting so good at recognizing letters and their sounds. He is eager to learn and it will be fun watching him learn to read this year.

Last Wednesday night I took all four children for a bike ride. Rachel has a seat on my bike. We were just going to go around the block and we ended up being out for over an hour. The twins especially love to ride. It was so fun being with them. They are at an age where almost every word out of their mouth is something I wish I could write down. They are so funny! When we got home, Brit had set up the tent in our yard and he and the boys had a campfire and slept in the tent. Rachel and I "roughed" in our nice soft beds!

Well, that's all for now. Thanks for staying with us on this journey. Love, Melissa

Monday, August 05, 2002 at 01:12 PM (CDT)

JONTHAN LOST HIS FIRST TOOTH TODAY! For some reason this news brought peace and excitement to my heart as it is a normal milestone in the life of a little boy. He was so excited this morning as he pulled it out and said, "that didn't hurt at all." After all you've been through my precious child, I'm so glad it didn't hurt.

I haven't updated much -- we've been so busy the last few weeks as we finally moved the business out of our home. We are renting space in a local used bookstore. It is so nice to have the extra space in the house. We plan to use the office as a room for Jonathan and all the warehouse space will be a big playroom for the kids.

Jonathan has been doing well, although he still won't take his Bactrim -- we're going to work again tonight on swallowing pills. We go down to start Delayed Intensification on Thursday. He'll get a spinal tap, Vincristine, Doxorubician, and start a 7 day pulse of Decadron (a steriod that makes him VERY HUNGRY and moody). I'm not looking forward to this at all.

Please continue to keep us in your prayers. Thanks!

Melissa

Saturday, July 20, 2002 at 08:12 PM (CDT)

Hello,

Not much new to update -- except that we are sweating it out in this lovely Minnesota heat wave. I took the boys to Stuart Little 2 this afternoon so that I could enjoy the air conditioned theater (we enjoyed the movie, too!)

Jonathan has been really moody lately -- not sure if he is not feeling well or if he is just sick and tired of leukemia or maybe a combination of both. He is also refusing to take medicine again which is not a good thing with all the oral chemo meds he will need to take with the next phase of chemo. We have an appointment at the clinic on Monday and we plan to talk to someone then about this meds issue.

I'll update again Monday.

Love, Melissa

Friday, July 12, 2002 at 08:53 PM (CDT)

Hello,

Jonathan's chemo appointment went well -- we were out of there by 9:30 in the morning which I believe is a record for us! He was the only one scheduled for a spinal tap on Thursday so that made things go much quicker. I took him to a Middle Eastern food store afterwards (I love Middle Eastern food!) and we bought Mango Juice, some meat, pita bread, and a few other things. Then we visited a bakery and Jonathan got Mountain Dew. He acts so proud when he drinks it -- he heard that it makes you hyper, so he drinks a few sips and then starts acting crazy. Then he says that he can't have any more candy all day because he had 3 sips of Mountain Dew.

I'm enjoying Jonathan all to myself this weekend as Brit took Andrew, Caleb, and Rachel down to Kansas to visit family. We have been doing lots of reading -- we started Charlie and the Chocolate Factory and we are both really enjoying it. We bought some big plastic dinosaurs at Wal-Mart and had a dinosaur war. We also cleaned the house today, Jonathan loves to vacuum and even takes the cushions off the sofa to get the stuff underneath (he learned that from Brit).

Jonathan is over at my parents house right now as we are doing inventory for the business -- well I should say, two friends are doing inventory and I am being their "slave" getting whatever they want or turning up the music.

Seriously, I am so thankful for all the help we have had over the past few months. I'll never be able to thank everyone properly, but I do want to thank Marcia and Cynthia for being here tonight. You guys are great!

Love, Melissa

Monday, July 08, 2002 at 01:52 PM (CDT)

Hello,

Jonathan is doing much better today -- so well in fact, that he got up before anyone else and made breakfast. He poured the cereal into the bowls, put them on the table, and put milk in everyone's bowl. Then he sat down to eat his before he called anyone else to the table. So the rest of us had soggy cereal!!!!

Well, none of the other kids wanted to eat anyway because they have all come down with what is now known as the fever virus at our house. Andrew, Caleb, and Rachel were all running high fevers last night and continue to do so today. They are now taking their turns laying on the couch and sleeping and saying, "carry me, it hurts to walk and I don't want anything to eat." I just hope Brit and I aren't next to catch this. Neither one of us feel real well today, but it may just be a combination of lack of sleep and the super hot weather we have been having.

That's all the news for today. Jonathan goes down to the cities on Thursday for a spinal tap and chemo so I'll update again after that, unless something very interesting happens before.

Love, Melissa

Sunday, July 07, 2002 at 04:35 PM (CDT)

Hello,

Well, it has been a rather stressful weekend with Jonathan's health. We ended up taking him to the clinic in Minneapolis on Friday morning as he had a very high fever. Of course by the time we got there, it was back in the normal range! They did give him an IV antibiotic and checked his blood counts and did a blood culture. His counts were good, so he was allowed to go home with instructions to call early in the week if he wasn't doing any better.

Jonathan continues to have high fevers every 6-7 hours (usually when the tylenol wears off). He sleeps alot and is very weak. He also complains of being cold most of the time -- since it is in the 90s and very humid here we know something is wrong! He is very tired of being sick -- he has made two comments this weekend that broke my heart. Once of them, "I didn't have a very nice day today Mom because I didn't feel good all day and all I could do was sleep". And the other, "Mom when I am ever going to feel better". At the moment he is having one of those in between fevers bursts of energy so he is sitting up and watching a movie with his brothers. Yes, the extent of his energy involves sitting up. I plan to call the clinic tomorrow if he isn't doing any better.

Keep him and us in your prayers. Thanks!

Love, Melissa

Thursday, July 04, 2002 at 11:34 AM (CDT)

Happy Fourth of July!

Last night I thought we would be spending this holiday in the hospital. Jonathan ran a fever all night, but since his counts are good, the doctors said it was alright for us to just give him Tylenol and keep a close eye on him. He's doing fine today -- got up and ate a lot, no fever, but has started coughing a little bit.

He had two chemo treatments this week -- on Monday he got Vincristine and Methotrexate (given through his port) and on Tuesday he got PEG which is two leg shots. The doctor examined his feet again and said that his foot drop is not getting any worse, so they put him back up to the full dose of Vincristine. He's complaining of jaw pain (a side affect of the Vincristine), but seems to be walking pretty well.

The kids have been swimming a lot since it is so hot here. I took them yesterday afternoon and Andrew and Caleb both started putting their heads under water! This was a big first for both of them and I was so proud of them. Rachel is not afraid at all and went under several times and loves to blow bubbles. Jonathan was much more cautious and he actually got out long before the others, but I think he was not feeling well as he didn't eat supper and then the fever came on.

They are out biking right now with Brit and I think Brit finally got the bike seat on the back so that he can ride with the boys and Rachel can have a ride, too. He is going to take the boys to a Rodeo this evening while I have some Mother/Daughter time with Rachel (which means for me, go to bed early! Yeah!). The mosquitos are so bad here that I don't think Rachel and I will brave the fireworks.

Well, I hope you have a nice holiday!

Love, Melissa

Tuesday, June 25, 2002 at 12:22 PM (CDT)

Hello,

Jonathan had his chemo appointment last Friday. For the most part, he is doing well ... However, he is having a side affect from the Vincristine (one of the chemo drugs) that affects the long nerves of his legs. Basically he has a difficult time lifting up the front of his foot (called foot drop). This can become quite a problem where eventually he would only be able to walk on his toes. This explains the difficulty he has with running and also why he trips so much. The doctor decreased his dose of vincristine on Friday and will be watching him closely over the next few weeks. We are doing exerices with him at home and we may need to start taking him to physical therapy.

Other than that he is doing pretty well. He has only thrown up once this week. We bought bikes for the boys on Sunday and all three of them are constantly begging to go out riding. There is a nice flat trail near our house that we went to last evening and they all had a blast. It was especially nice to see Jonathan having so much fun doing a physical activity.

Love, Melissa

Wednesday, June 19, 2002 at 09:14 AM (CDT)

Hello,

Last night was kind of a sad evening for me. Jonathan has been doing so well that many days I almost forget that he has cancer.

We went to a soccer game last night and to keep the boys occuppied I had them race each other. It was so sad for me to see that Andrew and Caleb could run so much faster than Jonathan -- and that Jonathan's gait is so much different than it used to be. Watching him run was painful for me. It looked to me like he didn't have very good control over his leg muscles and he came back from a short run so very tired.

Then later in the evening I heard Jonathan crying in bed. I went into his room and saw that he had thrown up all over the bed. He threw up again shortly after I got everything cleaned up and then finally went to sleep. I guess the chemo is starting to affect him again. After Jonathan got sick I picked up my Childhood Leukemia book and read again all about the chemotherapy meds he is on and realized how much sicker he could be. Part of that made me feel better and part of it made me worry about what is going to happen in the coming days as I know the affect of these drugs can get worse with every dose.

He appears to be feeling much better today and he had breakfast so hopefully he won't throw up again. He has lost so much weight and although he has gained a few pounds he still looks so thin. We go back to the clinic on Friday for more chemo.

Love, Melissa

Sunday, June 16, 2002 at 02:39 PM (CDT)

Hello,

Well, things are going alright here. Jonathan is doing well. He was very nervous about the leg shots and even tried to pretend he was sleeping so I wouldn't take him into the clinic. He tried a number of tricks, but in the end he cooperated and even said it didn't really hurt (we sure love that EMLA!)

His clinic visits are all scheduled for the next two months -- we will go once every 10 days with the exception of 3 weeks from now when we go two days in a row like last week.

Brit took all of the kids camping on Friday night. They all seemed to have a great time -- I don't know how he did it with all four of them, but he said they all slept very well and had fun getting wonderfully dirty. Rachel is quite the little tom-boy already and very eager to get in on the messes and wrestling her older brothers do. I think she actually provokes many of the "fights" they have.

Thanks for your continued prayers.

Melissa

Tuesday, June 11, 2002 at 09:26 PM (CDT)

Hello,

Jonathan started Interim Maintenance today. He and Brit went down early this morning to be at Children's for a 7:30 am appointment where he had a spinal tap, bone marrow aspiration, and IV chemo. The results of the bone marrow aspiration showed 1% blasts which means he is still in remission!

I will take him tomorrow morning for another appointment at Children's to get shots in both of his legs (another chemo drug). Then I believe we go every 10 days for chemo, I'll have to get the exact schedule when I go down tomorrow.

He's still doing really well -- eating, playing, and fighting with his brothers! He has been a bit irritable today, not sure if that is just his mood for the day or if he's not feeling 100% because of the chemo he received.

We still appreciate and need your prayers. Some days this journey seems so long and never ending -- and some days actually feel normal. We love reading your posts in the guest book too -- helps us not feel so alone in this.

Love, Melissa

Wednesday, June 05, 2002 at 09:54 PM (CDT)

Hello,

Well, we have yet another delay in Jonathan's chemo. He was to start Interim Maintanence tomorrow, but the blood counts we got today show that his blood is not yet recovered from the last round of chemo. His hemoglobin is great 11.9! It hasn't been that high since he was diagnosed. His white blood cells and platlets, though are still pretty low, as is his infection fighting ability.

I was really surprised to see that his counts were low as he is acting like a normal kid again. Eating all the time, running, talking, playing -- his hair is even starting to grow back a little.

Well, I will enjoy the short break as I realize once he starts chemo again we can expect just about anything. I talked to the nurse today and she said the main thing kids complain about during this next phase of treatment is mouth sores, but since all kids respond differently we can expect low counts and fevers as a possibility, too.

We'll soon see how Jonathan responds. The plan now is to get counts in St. Cloud on Monday and if they are high enough we will go down to Minneapolis for chemo on Tuesday and then again on Wednesday.

I'll keep you updated -- thanks for your prayers! Love, Melissa

Wednesday, May 29, 2002 at 06:49 PM (CDT)

Hello,

Well, we are back from the hosptial. Jonathan was discharged early this morning and now we are trying to settle back in. It is always so hard to come home after being in the hospital --even if it has only been for a few days. Laundry is piled up, the house is a wreck, ebay e-mails are piled up, tons of books to be mailed out (sent out almost 100 today), and so many questions to answer. The other children are so needy after not seeing me for 3 days so we have to battle with that too.

Jonathan is crabby, I'm crabby, and today it seems that there will never be an end to this!

Well, that's honesty for you. Today I feel like crashing and would really appreciate your prayers. I don't know how I am going to do all that is expected of me and I really don't know what to let go of. There are many things that I would like to do -- exercise, volunteer at church, spend some time with the wonderful 3rd grade girls I met in Awana this past year, meet some of my neighbors, pray more for Gabbie's family ... and it just seems I can't even do the very bare essentials. I can't seem to figure out what it is that God wants me to do. He seems distant and I feel very much alone. I know I have great support, but tonight I am feeling sorry for myself. Your prayers would be greatly appreciated it. Thanks!

Love, Melissa

Tuesday, May 28, 2002 at 10:43 AM (CDT)

Well, it seems that a very "normal" day was to be followed by a very difficult day. Saturday night Jonathan woke up with a high fever. After consulting with his oncologist, we decided to give him some tylenol and just watch him very closely through the night. He did fine and we were able to go to the church the next morning. We went to Grandma and grandpa's house after church and Jonathan started complaining of being very cold and tired. He laid down on the couch and was asleep within minutes. I checked his temp and it was high again.

We ended up taking him to the St. Cloud emergency room where he received an IV antibiotic and a blood transfusion. We were there until almost midnight. Right before we were to leave the hospital, Jonathan spiked a temp again, so we ended up taking him from the St. Cloud Hospital down to Children's Hospital in Minneapolis.

He's been doing alright since we have been here. No fevers, his blood counts are rising (his Hemoglobin is 10.9 -- it hasn't been that high since he was diagnosed). The doctor wants to keep up one more day since we have him on two IV antibiotics and fluids. He would like to wean him off those today and watch him to make sure the fevers don't come back.

This hospital trip has been rather sad for me as I look into the empty rooms that were once occupied by Steve and Gabbie. I miss seeing them and their families and it just reminds me again of how much their families must miss these precious children. Please continue to pray for them.

Love, Melissa

Saturday, May 25, 2002 at 08:08 PM (CDT)

Today was a fun day with Rachel and the boys. We went to a park, played in the sand, threw balls, had batting practice, threw frisbees (Andrew throws better than I do!!), and just ran around. It almost seemed like a normal day. Jonathan did tire easily and was a bit moody, but he did seem to really enjoy himself. We went for a "spin" in grandpa's convertible and got caught in a small cloudburst! We had to return home early to get the van for the Dairy Queen trip! The kids were all asleep by 7:30 and I'm following them very soon.

No other real news to report -- Jonathan will go in on Tuesday to have his blood counts checked (I suspect he will need another transfusion as he looks so pale and is so easily fatigued.) Then we will hopefully start Round 3 of Chemo on June 6 with a spinal tap and (I think) a bone marrow aspiration to make sure he is still in remission.

Hope you have a nice holiday weekend.

Love, Melissa

Wednesday, May 22, 2002 at 08:45 PM (CDT)

Hello,

I attended Gabbie's funeral last night. The funeral was a beautiful loving tribute to this little girl's short and difficult life. Many of Gabbie's nurses, her doctor, and several of the families I have met at Children's hospital were there. There seems to be an immediate bond between two people who say to each other, "My child has cancer."

Before I left, someone said, "this is a very difficult, but couragous thing you are doing Melissa." I was determined to go, but very afraid as I still had not come to terms with Jonathan having cancer and I was just sure I would be thinking about him the entire time.

What a surprise to me then, to find my thoughts primarly on the Wonderful Heavenly Father we have.

I came away from the funeral feeling so very blessed. The faith of this family is incredible and it showed in the scriptures that were read, the words that were shared, and the songs that were sung. Monica (Gabbie's mom) asked us to continue to search God's Word and seek to know Him more in memory of Gabbie's life. I was so challenged by this and by the time I got home much of the anger that I have felt with God concerning Jonathan's cancer was replaced by peace.

Jonathan is doing alright .. not eating much and very tired (we have to carry him up the stairs most of the time). But he still has his sense of humor and loves to tease his mother!

Love, Melissa

Friday, May 17, 2002 at 09:19 PM (CDT)

Hello,

A dear precious 2 year old girl named Gabbie went to be with Jesus today. Her story and family have been very special to me even though I have only met them once during a hospital stay. My heart is grieving for them and I would like to ask you to pray for their family. I know they are hurting very badly right now -- they are living a nightmare most of us (me included) do not even want to think about. If you want more information about her family and her fight with cancer you can go to www.caringbridge.com/mn/gabrielles.prayers

Now about Jonathan -- He's been doing fairly well. He's lost almost 6 pounds, but he is starting to eat a little again. He tires out very easily and has been complaining of headaches the last few days. He had to have a blood and platlet transfusion on Thursday. We were able to use the new faculity in St. Cloud which was nice -- but it still ended up taking all day as they are still getting used to the procedures. We had to wait 3 hours to get the blood because they didn't have the proper stickers to put on it! But they are learning and it will be nice to have some things done here rather than in Minneapolis.

His next chemo appointment is on Monday and we will be able to do it in St. Cloud. Then he is off all chemo until June 6 when we start round 3 -- 2 months of Interim Maintenance. This is supposed to be an "easier" round and most kids almost feel normal during it. Then we go back into the hard stuff again, but we are going to try hard to enjoy every moment of this summer!

Thanks again for your love and prayers! Love, Melissa

Monday, April 29, 2002 at 03:09 PM (CDT)

Hello,

Jonathan is doing well, although he rarely eats. We will be visiting the doctor tomorrow and starting up chemo again.

I read today on a friend's website that Stephen passed away this weekend. He is the 15 year old with leukemia that I asked for prayers for after our last hospital stay. Please keep his family and friends in prayer over the coming weeks and months. I did not know them well, but his death touches me deeply as I imagine the pain his family must be feeling right now.

Love, Melissa

Thursday, April 25, 2002 at 01:42 PM (CDT)

Hello,

We are home! We got home Tuesday evening and I have been playing catch up ever since. I'm still behind on many of the e-mails from our business ... it seems like that is always the hardest to catch up on.

Jonathan is doing alright. He wakes up a lot at night to go to the bathroom and he seems to feel sick to his stomach alot. He hasn't eaten much ... most of the foods that he says he wants he takes 1 or 2 bites and then complains that his stomach hurts.

People often ask me, "How do you do it?" Well, the truth is that I DON'T do it . . . ALONE. I have so much help and so many great friends. People who call every day to make sure we are alright. People who will listen when I want to vent or cry. People who do our laundry. People who have cleaned my house. People who bring meals. People who have visited us in the hospital. People who have loved and cared for our other children. People who have helped out in the business. People who have given money and food gift certificates. People who are praying. My heart overflows with gratefulness. I am so touched by all of your love. God is using people around the world to give us the strength to get through this. It is beautiful to watch his church at work. Thank you.

Love, Melissa

Tuesday, April 23, 2002 at 10:40 AM (CDT)

Good Morning,

This is going to be a long one -- I'm putting the medical information at top so if you don't want to read my ramblings you can stop. Jonathan's bladder biopsy came back normal! We are rejoicing and thanking God for this.

We had a rough night. No fevers, but Jonathan did not sleep well and threw up twice. But this morning he is almost back to his normal self -- talking non stop, cracking jokes, laughing, and teasing the doctors and nurses. He will have his spinal tap and chemo at 12:30 today. Unless something changes, we should be discharged late this afternoon. We will continue the IV TPN at night for the rest of the week.

The doctor told us this morning that they will not be giving the dose of Cytoxan that is scheduled for next week (this was the chemo med that caused all the problems with his bladdar). He consulted with some of the other doctors and the consensus is that any possible benefit we would get from the drug is outweighed by the risks of him having more damage to his already sore bladdar. He will get Cytoxan again later in treatment, just not now. Needless to say, I am very thankful that they believe he can skip this dose.

I know that many of you are praying for us and Jonathan -- please continue. I'd also like to ask you to pray for two families that I have met up here -- both of these families have children who are very sick and have been told that they are terminal.

One of them is a 2 year-old girl. She has Stage IV Neuroblastima. I read the story of her illness on her websight yesterday after meeting her mother. I cried all the way through it. The family is asking people to pray for her healing and I am eager to ask you to join me in my prayers for her, her parents, and her older sister.

The other is a 15 year old boy who has the AML form of leukemia. The family has been in the hospital since July and were told yesterday that there is not much hope beyond what has already been done.

Seeing these families deal with news like this has been very difficult for me. It hits very close to home as I realize that at any time we could be told that Jonathan has relapsed and is in this same situation. Some days life with leukemia feels almost "normal", but then it hits you that this is CANCER we are dealing with and the questions and whys just stare us in the face -- threating to damage our faith by the lack of answers.

I do know that God is sovereign and that he loves children far more than we do (thanks for reminding me of that last night, dear friend). I will rest in that knowledge -- while at the same time I will be praying for these two families and my own son -- that God would bring healing to their bodies and healing to our families as well. When our children hurt, we hurt too!

Tearfully and prayerfully, Melissa

Tuesday, April 23, 2002 at 10:40 AM (CDT)

Good Morning,

This is going to be a long one -- I'm putting the medical information at top so if you don't want to read my ramblings you can stop. Jonathan's bladder biopsy came back normal! We are rejoicing and thanking God for this.

We had a rough night. No fevers, but Jonathan did not sleep well and threw up twice. But this morning he is almost back to his normal self -- talking non stop, cracking jokes, laughing, and teasing the doctors and nurses. He will have his spinal tap and chemo at 12:30 today. Unless something changes, we should be discharged late this afternoon. We will continue the IV TPN at night for the rest of the week.

The doctor told us this morning that they will not be giving the dose of Cytoxan that is scheduled for next week (this was the chemo med that caused all the problems with his bladdar). He consulted with some of the other doctors and the consensus is that any possible benefit we would get from the drug is outweighed by the risks of him having more damage to his already sore bladdar. He will get Cytoxan again later in treatment, just not now. Needless to say, I am very thankful that they believe he can skip this dose.

I know that many of you are praying for us and Jonathan -- please continue. I'd also like to ask you to pray for two families that I have met up here -- both of these families have children who are very sick and have been told that they are terminal.

One of them is a 2 year-old girl. She has Stage IV Neuroblastima. I read the story of her illness on her websight yesterday after meeting her mother. I cried all the way through it. The family is asking people to pray for her healing and I am eager to ask you to join me in my prayers for her, her parents, and her older sister.

The other is a 15 year old boy who has the AML form of leukemia. The family has been in the hospital since July and were told yesterday that there is not much hope beyond what has already been done.

Seeing these families deal with news like this has been very difficult for me. It hits very close to home as I realize that at any time we could be told that Jonathan has relapsed and is in this same situation. Some days life with leukemia feels almost "normal", but then it hits you that this is CANCER we are dealing with and the questions and whys just stare us in the face -- threating to damage our faith by the lack of answers.

I do know that God is sovereign and that he loves children far more than we do (thanks for reminding me of that last night, dear friend). I will rest in that knowledge -- while at the same time I will be praying for these two families and my own son -- that God would bring healing to their bodies and healing to our families as well. When our children hurt, we hurt too!

Tearfully and prayerfully, Melissa

Monday, April 22, 2002 at 12:36 PM (CDT)

Hello,

We are still here -- Jonathan spent most of the weekend battling high fevers, a cough, no appetite, diahrea, and very low blood counts (ANC below 100). The fevers appear to be gone for the moment and his doctor is hopeful that now that his ANC is on the upswing (now at 117 -- normal is over 1000)he will soon be feeling better.

Dr. Nelson has cut back on the amount of fluids he is getting (mom says YEAH!, less trips to the bathroom in the middle of the night) and also will cut back on his antibiotics. He is hopeful that we will be able to go ahead with Jonathan's chemo tomorrow and maybe even go home -- we will go home on TPN which is IV fluids and nutrition.

He is still not eating at all or drinking much, but the hope is that with less fluids he might be more thirsty and that he starts to feel better he will be able to eat.

Last night, on of Jonathan's IV connections started to leak which got everyone worried about a possible entry point for infection in his port. So, we had to take out his needle and reinsert a new one. We usually use a numbing cream when we put the needle in, but we didn't have the time to let the cream work (takes at least an 1 hour). We had to put in the needle without the Emla and Jonathan did great! I was so proud of him. Today he helped the nurse draw blood out of his port and he said that this is now his job.

We had a puzzle race this morning -- we both took a different puzzle and put them together without looking at the boxes. Jonathan won!

Well, I had better go. Love, Melissa

Saturday, April 20, 2002 at 02:52 PM (CDT)

Hello,

Well, we are still at Children's Hospital. Jonathan is sleeping right now, so I'm taking a moment away from the room and using the computers in the Family Resource Center to update our family and prayer warriors.

Jonathan had the cystocopy on Friday morning ... the urologist says that it looks like just long lasting effects from the chemo he had 3 weeks ago, but that there was one spot which looked a little suspicious, so they too a biopsy. We will know the results of that on Monday.

I came down Friday afternoon and Brit is spending the weekend with the other kids. When I arrived on Friday, Jonathan still had not gone to the bathroom and was in a lot of distress. I finally got him to get into a tub of warm water and he went right away! So, for the next 3 bathroom trips, that's what we had to do. Now he is going pretty well with minimal pain. He just has to go every 45 minutes from all of the fluid that is being put in him (including all night long!)

He has not eaten since lunch on Friday and has complained of stomach ache on and off -- as well as mouth sores and says he feels like food would come back up his throat. He also has developed a nasty cough. They did a chest x-ray this morning which was clear. But, he is throwing up now and quite obviously does not feel well. He should be getting some zofran soon for the nasuea and they will also give him something for the mouth sores and possible acid reflux.

He is scheduled to receive chemo again on Monday, which they are talking about holding off on until his cough improves. The doctor will make a decision when she sees him tomorrow. At this point, I'm not real sure when we will be able to go home. I keep hoping tomorrow--but not real confident that is going to happen.

My aunt was here over the lunch hour to relieve me for a bit so I could have a "leisurely" lunch and my parents plan to come down this evening to give me another break. Being in the hospital is exhausting -- it's sort of strange, I don't do much in the form of physical work all day, but I feel like I've just run 10 miles and could easily sleep for the next 12 hours. It usually takes me a few days to get back on track after a hospital stay.

You can also pray for Andrew, Caleb, and Rachel. They are having a very difficult time with all the comings and goings of their parents and older brother. They cried and hung on to me for the longest time before I left yesterday saying, "Mommy, don't leave us." Sure breaks my heart!

Well, I should get back to Jonathan. I'll try to update tomorrow or Monday at the latest. Love, Melissa

Thursday, April 18, 2002 at 08:04 PM (CDT)

Good Evening -- this has not been the kind of day that I was expecting at all. I was up all night vomiting, which continued through most of today. I am still rather nausated, but am finally keeping fluids down. Around 10:00 this morning, the doctor's office called to see how Jonathan was doing. When I reported that he was starting to show blood in his urine again, the nurse said she would talk to the doctor about starting IV fluids at home again and call me back. She called me back right away and said that Dr. Nelson wanted Jonathan to come down to the hosptial to be checked to make sure that something other than the chemo that he had 3 weeks ago is not causing the bleeding.

Brit took him down to the hospital -- they checked his blood counts to make sure his platlets were not really low (often a cause of bleeding) and they are fine. He was started up on IV fluids again and will have a cystoscopy (not sure on the spelling) tomorrow to check out his bladder. He will be sleeping during this procedure (thankfully!) and hopefully it will not irritate his bladder further.

Brit called this evening to say that Jonathan is not eating or drinking much, and that he was also pretty anxious in the hospital -- very worried about what the nurses were going to do to him. Please keep praying for our little guy -- it is very difficult for me to be here at home and unable to take care of him.

Well, I need to try to get some sleep. I'll try to give an update tomorrow. Love, Melissa

Monday, April 15, 2002 at 11:17 PM (CDT)

Hello,

Well, it was a HOT day here in MN ... temp was close to 90. Jonathan had his chemo today -- medicine was given in his spinal fluid, through his port, and he also received two shots. I was very pleased that they gave him the shots while he was still sleeping from the spinal tap, so he doesn't remember them at all.

Jonathan's blood counts were very low today (this is what is to be expected from the chemo he is receiving). His hemoglobin was 6.7 (normal is 11-13), so he had a blood transfusion while he was in the hospital this morning. His infection fighting ability (ANC) was also very low (under 200) which means we need to keep him away from crowds. Fortunately outside is "free" so he can be outside as much as he wants as long as he is covered in sunscreen. We played outdoors most of the day ... it was so hot the twins were just sure that the wading pool near our home HAD to be open. I can't believe it was snowing two weeks ago! That's all for now. Love, Melissa

Friday, April 12, 2002 at 03:24 PM (CDT)

New picture of all 4 kids on the photos page. Check it out!

Friday, April 12, 2002 at 03:12 PM (CDT)

Hello,

Well, we have just managed to stay out of the hosptial for a full week! Jonathan and I both have colds with a bad cough, but no fever so he is alright for now ... as long as it doesn't get any worse. He still has blood in his urine so we will continue to give him IV fluids through his port until we go back to the hospital on Monday. He is scheduled for another spinal tap and three doses of chemotheraphy -- one of them will be a shot, which no one is looking forward to! Other than his cough, he is feeling pretty good and has some spring to his step again. I took him with me on my post office and bank run today. I know it was so nice for him to get out of the house. He asked if we could stop at the library to get some videos, I said sure and he picked out 3 ones on SNAKES and had the nerve to ask me if I would watch them with him! He is such a teaser and has such a sense of humor. Well, that's all for now. Melissa

Tuesday, April 09, 2002 at 02:36 PM (CDT)

Hello,

Jonathan's spinal tap went well on Monday. He tends to like these procedures (spinals and bone marrow aspirations) as they give him a sedation medicine that puts him to sleep. He likes to "go for his short nap."

He still has blood in his urine so we are continuing IV fluids at home for the next 3 days. He will also be having chemo (ARA-C) for the next 3 days which I am able to give him at home through his IV line. It is nice that we don't have to go down to Minneapolis every day for this.

His blood counts were very low on Monday, so we had to keep him home from school. I also have the other kids at a friends house for the next few days, since he is not sleeping well with all the fluids he is getting and would likely wake everyone up. I also want to try to keep him from getting sick from his brothers and sister while he is so vulnerable to infection ... I would really like to stay out of the hospital this week since I haven't even started doing our taxes yet!

Jonathan went to the park today with his grandma lee and he stayed for 1 1/2 hours. That's a good sign as he hasn't been very active for the past 6 weeks. He is putting together another puzzle at the moment ... this is his favorite activity these days. He is so good at putting puzzles together!

Well, that's all for now. Love, Melissa

Saturday, April 06, 2002 at 01:00 PM (CST)

Hello,

We came home from the hosptial yesterday! Jonathan is doing much better -- although he did hold medicine in his mouth for 2 1/2 hours on Thursday. We couldn't figure out why he wasn't talking and then he finally threw up. Why he wouldn't spit it was is beyond me! Once we got home, he took his meds fine ... I think it may have been the confusion of being in the hospital and being in so much pain that made it so difficult for him. He is on IV fluids at home during the night, so we are playing nurse with him. He has a little pump that fits into a small backpack along with the bag of fluids. It runs for ten hours and basically allows him to be home and we don't have to nag him to drink all the time. He doesn't have much of an appetite right now so this is nice.

We will go back to the hospital tomorrow evening (Sunday). He is scheduled for a spinal tap on Monday at 7:30 am, so we will stay at the Wassie center (like a hotel that is connected to the hospital) overnight. They will be putting chemo into his spinal fluid to prevent the leukemia from getting into his brain or spine. He actually has three of these scheduled -- one a week for the next three Mondays.

He's doing alright at home, but very tired. Guests have been surprised to hear him say, "I want to take a nap," or "I want to go to bed now."

Jonathan says hi and thanks for all the prayers. Love, Melissa

Thursday, April 04, 2002 at 03:07 PM (CST)

Hello,

Jonathan was admitted to the hospital on April 2 because of difficulty he was having urinating. The chemo meds he took on April 1 can irritate the bladder which is what the doctors think have happened. We took him to the hospital to flush him with fluids for a few hours and unfortunately we are still here. He did not go to the bathroom after being here for six hours, so they finally had to put a catheter in him. Even with the catheter he was still very irritable ... they took it out yesterday at 2:30 pm and about 3:00 he began to cry and did not stop until they finally gave him morphine at 5:00. Once the morphine took effect he went to the bathroom and was instantly a different child. I assumed we would be going home the next day ... But...

The pain continued once the morphine wore off and he now refuses to take any medication, is very crabby (mostly only says NO!) and has discomfort everytime he goes to the bathroom. All test results are showing that he does not have a bladder infection and that there are no large clots in his bladder, so we don't know why he is having so much discomfort. He is very difficult to talk and is not cooperating well with us or the doctors and nurses. I'm beginning to think he is just very tired of being sick ... I know I would be.

You can pray for us as parents that we would have wisdom in dealing with him ... I feel like every time I walk into the room we are going to have a fight with Jonathan over something. This has been the hardest week for me since we have been in the hosptial. Melissa

Thursday, April 04, 2002 at 02:47 PM (CST)

Hello,

Allright ... this will be a long one. We just discovered this service and decided that it would be a good way to update family and friends on Jonathan's health.

Jonathan was dianogsed with the ALL form of leukemia on February 20. He had been sick for about a week with a cough, fever, and fatigue. He also had some brusies around his eyes that we thought maybe were from coughing so hard. I finally took him to the doctor who immediately said, "this is the sickest kid I've seen today!". He did a chest x-ray, ordered blood tests, and asked us to take him to the St. Cloud Hospital. My mother wanted to wait to see the test results first, so we did that. The doctor came back with the x-ray and said it looked alright, but that the blood tests were not good -- his White Blood Cell count was very high, his platlet counts were very low, and his hemoglobin was extremely low. He told he suspected leukemia and was going to send us to Children's Hospital in Minneapolis to confirm this.

Well, this was a very difficult night. We arranged care for our children and took Jonathan down right away. Several close family friends also met us down there and provided some excellent support. The doctor told us that evening that he was 90% sure it was leukemia but that he did not know the type so we would be doing a spinal tap and bone marrow aspiration the next day.

The next day we found out it was the ALL form of leukemia and that Jonathan had the standard risk form of it. We had a port-a-cath inserted into his chest to make giving meds and drawing blood a bit easier and started chemo the next day (on Friday).

After two weeks of chemo, Jonathan was still not in remission -- they like kids to be in remission after only 7 days, so it became evident that Jonathan's cancer was a bit more difficult to treat. They changed him to a high risk protocol and hospitalized him for 2 days to give him a very high dose of chemo.

This caused a hospitalization a week later for fever -- and we continued to give high doses of antibiotics at home.

Finally on March 29 we got the news we were waiting for ... Jonathan's cancer is in remission. We started the next phase of his treatment on April 1 which involves a number of spinal taps, IVs both in the clinic and at home, a few shots, and lots of pills to take at home.

Well, that's the story up to now in a nutshell. I'll try to keep this updated regularly. We really appreciate your thoughts and prayers for Jonathan and our family. Melissa

Thursday, April 04, 2002 at 02:39 PM (CST)

Hello,

Jonathan was admitted to the hospital on April 2 because of difficulty he was having urinating. The chemo meds he took on April 1 can irritate the bladder which is what the doctors think have happened. We took him to the hospital to flush him with fluids for a few hours and unfortunately we are still here. He did not go to the bathroom after being here for six hours, so they finally had to put a catheter in him. Even with the catheter he was still very irritable ... they took it out yesterday at 2:30 pm and about 3:00 he began to cry and did not stop until they finally gave him morphine at 5:00. Once the morphine took effect he went to the bathroom and was instantly a different child. I assumed we would be going home the next day ... But...

The pain continued once the morphine wore off and he now refuses to take any medication, is very crabby (mostly only says NO!) and has discomfort everytime he goes to the bathroom. All test results are showing that he does not have a bladder infection and that there are no large clots in his bladder, so we don't know why he is having so much discomfort. He is very difficult to talk and is not cooperating well with us or the doctors and nurses. I'm beginning to think he is just very tired of being sick ... I know I would be.

You can pray for us as parents that we would have wisdom in dealing with him ... I feel like every time I walk into the room we are going to have a fight with Jonathan over something. This has been the hardest week for me since we have been in the hosptial. Melissa

Thursday, April 04, 2002 at 02:37 PM (CST)

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