Saturday, June 17, 2000 at 07:59 PM (CDT)

DAY 8 ALL CHILDREN'S HOSPITAL

A day with Andrea for a nurse can never be a bad day. She is full of sweetness on top of being one of the best skilled nurses on the floor.

Brage's counts look like they are holding. He still has no whites but that should change very soon as it appears his marrow is finally recovering.

Today was a mixed day. We had a few visitors and really enjoyed some company. Uncle Todd came by to play some Clue Jr and Nintendo. He had some stiff competition and needs to practice up a bit if he expects to win. PopPop came by and brought smiles to "his boy's" face.

Brage had to have his port de-accessed and then re-accessed today, which was a bit of an ordeal. Fortunately Andrea was very patient. It is a tremendous thing to do to decide to cooperate when you are afraid.

We went for a "roll" in the wheel chair today and when we returned discoved that the inside of Brage's arms were purple red streaks 5 inches on both arms from where he had put his arms on the rests of the chair. His platelets are still low enough to cause bleeding.

Today is mine and Omar's 11 year wedding anniversary. Hard to believe 11 years have passed already. Those of you who were there with us, does it feel like it was only yesterday to you too???

Thanks for checking in,
Tam

Friday, June 16, 2000 at 08:35 PM (CDT)

DAY 7 AT ALL CHILDREN'S HOSPITAL

Brage has been in a wondeful mood all day. We got to see two of our all time favorite movies. PARENT TRAP and COOL RUNNINGS. We even got a visitor today which cheered us and helped the day pass quickly.

We tried to walk (fully masked) to the "tube". The tube is a passageway in the sky from the hospital to the Medical building. It is glass and you can watch the cars pass underneath. The only problem is that there is no air conditioning so in the summer it is very hot.

On the way back Brage's foot swelled, turned purple, and started to bleed. We abandoned the walker and found a wheelchair instead. We are going to wait a few more days before trying that again, but it was good to see the outside. The sky was amass with dark storm clouds typical for Florida this time of year.

We got to see Dr. B today and OH WHAT A RELIEF that is. He came in, checked up on Brage, and told me he thought it would take a few more days at least. His mom is having health problems so I ask that you please keep our Dr. B in your prayers as well as his mom. He looked very sad to me today.

Dr. Ayala also came to see Brager today. Every time I see her I like her more and more. She is smart and very thorough. She said if he can keep his fever down (which he did throughout the day) we may be let home by Monday with IV antibiotics.

Brage's counts today show improvement. His hemoglobin in 9, platelets 30, and white cells are still 0. The good thing is that he is making bands and segs. Why this is a good sign, I don't exactly know, but it is something I hear often enough to believe must be true.

I met a really nice family today. Their little boy is 2 and diagnosed with ALL. He reminded me of Brage when he was first diagnosed. Chubby little legs, diaper and IV pole being lugged around like a beast of burden. We had a lot to share.

As always, thank you for not forgetting us. Thank you for praying and checking up on us.
Love,
Tam

Thursday, June 15, 2000 at 07:05 PM (CDT)

DAY 6 AT ALL CHILDREN'S HOSPITAL

Our nurse was Dorothy today. She is a breath of fresh air. We only manage to "get her" on rare occassion as she is much in demand around here.

Our favorite snack cart lady Patty has given her notice here. She did it shortly after baby Gant passed away. When we spoke she said it was just getting too tough to deal with all the loss. She gets very attached to the children and finds working here too painful. Her leaving is a great loss to the children. She brings a smile and compassion with every snack she delivers.

I got a call from my friend Wendy today. (Ian's mom) She saw my car downstairs in the parking lot while at the clinic and was worried about us. They met with Dr. B and basically all concluded the next step was hospice. Dr. B is suggesting Ian may make it 6 months but not to expect more. Please pray for a miracle. A complete and total miracle for Ian and his family. Wendy is tired. She has run out of steam and has no energy left to seek out other options. The research clinic currently involved with the b pap studies did not get back to her and she is not up to chasing what she feels may be a waste of time. If this is the Lord's answer for them please pray it will be loud and clear. Brage is very concerned for his little buddy.

Brage's counts today slipped even lower. His body chewed through his red blood cells and platelets. His hemoglobin was 7.7, his platelets 14, and his white cells were 0. As those of you who read this regularly know by now, this meant yet another rbc transfusion and 6 more units of platelets. Again it is a wait wait wait for the white cells to rise to the occassion.

Brage's foot continues to be painful. It is purple and slightly less swollen. His temp hung around 100 all day today.

I have yet to see my Dr. B. I hear through the grapevine that he leaves again on Monday for another 2 weeks. I am going to call him tommorow and ask for him to come and see my boogie before he goes.

My little Sarai has been staying with some friends and I am anxious to see her. She is a real trooper. She prays for her brother every night and reminds everyone else to pray for him as well.

I am very grateful to Mr. and Mrs. Northrup for bringing me some clean clothes and lunch today. It was great to see a familar and friendly face.

Thanks once again for checking in and for your continued prayers for our Brager.
Tam

Wednesday, June 14, 2000 at 07:54 PM (CDT)

DAY 5 AT ALL CHILDREN'S HOSPITAL

Brage seems to be in less pain today. The pain comes in waves so they have stopped the morphine and are using codeine with heating pads. His foot in red/purple still and swollen. There is a postule about the size of a dime still. We are just waiting for it to start looking better, though I've been told it will "appear" worse once his white cells kick in and rush to the site to fight off the infection.

His counts today are slightly down from yesterday. Platelets have slid back down to 20, hemoglobin is 8.5, white cells are still not budging. Today's chemistry panel showed that there were elevations but nothing unusual for post chemo.

They came to get Brage for a surprise x ray today. It was ordered Sunday but no one mentioned it until this morning. The doctor's started to suspect that the infection had found it's way to the bone. Fortunately this was not the case. The bone looks free of infection. ::::whew::::
He is still running a low grade temp between 100 and 101 so we are keeping a close eye on him.

Brage got a big kick out of being allowed out of bed today. The physical therapist gave him three choices for mobility. Wheel chair, crutches, or walker. It felt a little like the story of Goldilocks and The Three Bears.

He got in the wheel chair and took it for a spin. Nothing new, he often rides around in that when here for chemo due to overall weakness. He shrugged his shoulders and rejected the wheel chair.

Next Brage tested the crutches. They were short little guys perfectly sized for him. The problem? It takes a lot of coordination to get used to them. We tried it several ways. He shrugged those off as well. You just can't get where you want to quick enough in Brage's opinion.

Finally we test drove the walker. Guess what....we found a perfect fit. He scooted this way and that before shaking his head yes. "I'll take this one" he said. I had to smile.

We passed the time today junking out on cartoons, nintendo, and magic school bus books. We've had 16 bowls of cereal each. If I see one more dish of vanilla pudding I may be sick. Trying to keep our chin's up and our fevers down.

Thanks for checking in.
Tam

Tuesday, June 13, 2000 at 07:58 PM (CDT)

DAY 4 AT ALL CHILDREN'S HOSPITAL

Brage's labs were not significantly higher today even with the transfusions yesterday. His hemoglobin is up to 9.1 but since he is at his nader it could go either way. His platelets are only up to 27 but still better than the 17 of yesterday. (normal is 150-450) His white cells have not budged. He still has .07. (normal is 4. - 12 )

Without white cells this infection is just raging through his foot. It gets uglier by the moment. A complete panel will be drawn tommorow for two reasons.

1) to check and see if his marrow is making white cells and if red cells and platelets are getting gobbled up still.

2) Last week his bilirubin was elevated and now his eyes are yellow. There is a question about how elevated it may be now.

We are still treating the pain with meds and after a meeting with the doctor this morning it would seem that we are here for at least 5 more days but more likely a week.

I saw a glimpse of Dr. B today and am anxious for him to be back. He was in and out before I could even say hello.

Thank you for checking in again and for your continued prayers and support.

Tam
Psalm 28:13,14
I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord; be strong and take heart and wait for the Lord.

Monday, June 12, 2000 at 06:06 PM (CDT)

DAY 3 ACH

Brage was up most of the night with pain. His foot appears worse in spite of the antibiotic though we know it is addressing the infection. It is swollen, red, and now an enormous blister has surfaced. The secondary infection site remains unchanged.

Late morning Brage finally received pain meds. First codeine which did not seem to relieve the pain and later morphine. He hates to get anything that makes him sleepy (afraid he'll miss something) so it is always a last resort.

The labs this morning showed once again a low hemoglobin and low platelets requiring yet another red cell transfusion and platelets. This makes 4 units of red cells within 8 days.

Still no word on how long we will be here and the culture's have yet to grow anything funky. Dr. B is on vacation so Brage is being seen by the residents and the newest doc on the onc team.

Thank you for checking in.
Tam

Sunday, June 11, 2000 at 07:33 PM (CDT)

DAY TWO AT ALL CHILDREN'S

Brage's infection on his foot is quite a monster to look at and is causing him a lot of pain. We have discovered a secondary infection site on his right leg near his knee. The actual cut is small but there is a large round red circle surrounding it the size of grapefruit. It is amazing how quickly these things go from nothing to hugeness.

He spent the whole day in bed as his temp fluctuated from 99-101 all day. Typically on a "clean" floor or cancer ward if your temp hits the magic number (101) you must keep your door closed and may not leave your room. So far the cultures are clean but we still have 48 hours to make sure the infection did not get into the blood. Either way they are giving him antibiotics for a blood infection. The question will be whether we go home after three days or 10 days and then continue IV antibiotics at home.

Dad and Sarai came to spend the day and only just left a short while ago.
We played a neat game to pass the time. I pretended to be people that they knew by saying things those people would say and acting like them when I said them. THe kids guessed almost every one right. I started by pretending I was Jonathan (or Jonason as Sarai would say) and I said "You loves ya baby?" and "Who's the King?", they guessed right away. Then I pretended to be PopPop. I said, "Where's my boy?" and Brage guessed right away. Then I pretended to be Grandma, "Ickey poo" I said and they both guessed this one exactly at the same time. I will be keeping a keen eye on people we know in the future so I can get better at this game by memorizing things people say and how they say them. It sure helped pass the time today.

I will update tommorow.
Goodnight!
Tam

Saturday, June 10, 2000 at 11:23 PM (CDT)

Sometime in the early morning hours Brage woke up screaming in pain. I tried to console him for a short time and then finally opted for pain killers. After an hour episode he finally fell asleep.

This morning he seemed pain free and "normal" again. By evening his foot was swollen and almost purple. Though his temp was still low grade the doctor admitted Brage to All Children's for IV antibiotics and cultures.

He cried the whole way here and said his foot was burning all the way up his leg. I went through ER but there was no where to park and I had to carry him inside as by this time he could not walk. One of the ER doc's actually parked my car for me. I have no idea where.

It is now 12:30 (eastern standard) and we have accessed his port (third time this week) in spite of his protests. He is really frustrated. The nurses are doing their best to get what they need without invading him any more than necessary. I am grateful.

I will update as soon as I know something. I suspect it is an infection as he has no white cells to fight any bad germs. It is very easy for this to happen. If the infection gets into the bloodstream we will be here for awhile.

Tam

Friday, June 09, 2000 at 08:27 PM (CDT)

We woke up bright and early this morning and Brage was the first person to arrive at clinic for his appointment. His counts showed a serious drop even with Monday's blood transfusion. We were packaged up and shipped out with our orders to University Hospital. There they gave Brage two units of red cells, 8 units of platelets, and his gcsf infusion.

It is 9:30pm (eastern standard) and we are just now home. Sitting around all day just makes you tired. I think it's called rest fatigue. Aunt Montana helped make the stay tolerable by coming to visit. You can tell a good friend, someone who is willing to "do time" with you. Brage was so excited when she called and said she was coming. He started hooting and hollering. It was so loud the nurses came running to see what was wrong. I told them he was just celebrating!

Brage has been running a low grade temp. 100.4 which I will have to keep an eye on through the night. His anc is 0 and his white cell count is under 1 which means his body will probably not produce a high temp in the event of infection. As soon as Brage hits 101 we are required to return to the hospital.

Tommorow I was planning on taking the kids to a butterfly exhibit at USF. It is an outside event and if it's crowded Brage will just "mask up". We did a small study on butterflies today as we bided our time in the hospital so he is really looking forward to our outing tommorow.

Thanks for checking in!!
Tam

Wednesday, June 07, 2000 at 11:37 AM (CDT)

AMEN HALLELUIA
IT FINALLY RAINED HERE IN TAMPA!!!!

For those of you who are not aware we have been experiencing a severe drought. Worse drought in 85 years. Reminds me what a miracle the process of watering the earth really is.

Brage has been learning about drought conditions as this seems like a good teaching opportunity. He is very interested in conserving and being a good steward of our blessings.

The night before last Brage participated in his injection by drawing the syringe back and tapping it free of bubbles. Last night he did the entire procedure himself. Alcohol swabbed his leg, filled the syringe with the neupogen fluid, injected his leg (without even wincing), then held a tissue to the site and put a bandaid on it. Omar sat there in shock. I knew what Brage's curiousity had been leading up to; yet I was still amazed at how he stuck himself without any hesitation. Brage was quite intent on following the exact procedure he'd watched so many times.

I support his desire to participate because I feel like this gives him control over a situation he has such little control over. I covered the safety protocol with him and told him how important those safety measures were. He is a very good student, but mostly I am awed by his boldness and courage.

Our children are the greatest blessings God gives us. Sometimes I sit and wonder at God's goodness to me. My husband (who is a great source of support and encouragement no matter what I want to do), my children who bring me new joy day after day, my family and friends. God has certainly placed my boundary lines in pleasant places.

Tam

Tuesday, June 06, 2000 at 07:10 AM (CDT)

On Monday morning we got up early, went to clinic, and had Brage's labs drawn. His counts were low as expected after chemo. The doctor checked him out and sent us to University Community for a transfusion.

A basic 6 hour transfusion at UCH takes at minimum 12 hours. One of the reasons for this is the registration process. It took them two hours just to get Brage into the system. I am considering whether it would be wiser to drive the extra 45 minutes over the bridge to St. Pete. It may be quicker overall.

Brage played video games, nintendo, watched "Honey We SHRUNK OURSELVES" to pass the time. We eventually even got some school work in. Though he is forced to lay down he stays busy.

Later on dad and Sarai came to visit and have dinner with us. We actually made it home by 8pm, in time to have some watermelon before bedtime.

We were happy to bump into Chris ( a neuroblastoma patient)at clinic. He is full of spunk and HAIR!!! His hair is starting to fill in and he looks terrific with it. Brage was happy to see his little buddy.

Our next clinic is on Friday and Brage will probably need another transfusion at that time.
Thanks for checking in.
Tam

Saturday, June 03, 2000 at 03:35 PM (CDT)

Brage was discharged without too much excitement. Other than headache, leg pain, fatigue, and stomach cramps he is in good spirits. The effects of the chemo will escalate through the next 14 days. (all par for the course) I am giving him his neupogen shots at home to boost white cell production.

We are settling in and resting up here at home. Of course there is so much to do always....catch up on all those chores that were left behind while gone. Unpack and repack...I sort of have the routine down but every now and then it overwhelms me.

There are 30 messages waiting for me on my answering machine. (Please be patient if you have left one, I will try to return them all as soon as possible) Mail to open, bills to pay. Why is it that the real world cannot just take a breather until I come up for air? Just kidding.

I got a call from Ian's mom this morning. The doctor's have decided to take him off chemo protocol as they feel it is too toxic for him. After consulting with Sloane Kettering they've concluded there is not much else to do. I am grieving with Wendy but praying that perhaps the treatment in Minnesota may hold some measure of hope. They have agreed to make a few more calls just in case it is a possibility. Please be praying for the Linn family, for strength, courage, wisdom, and peace.

PSALM 42:7,8
DEEP CALLS UNTO DEEP AT THE NOISE OF YOUR WATERFALLS; ALL YOUR WAVES AND BILLOWS HAVE GONE OVER ME. THE LORD WILL COMMAND HIS LOVINGKINDNESS IN THE DAYTIME, AND IN THE NIGHT HIS SONG SHALL BE WITH ME.

Tam

Friday, June 02, 2000 at 08:00 AM (CDT)

DAY 3 ON 2 SOUTH WEST

When I walk through the halls here this place has a "feel" to it that I just cannot explain. Different from other hospitals. Perhaps it's just the association from all our time spent on the floor, I don't know. When I see the Yogi Bear on the wall and the turn we take off the elevator it overwhelms me.

Brage has been the energizer bunny. Loads of energy in spite of all the chemo running through him. I think it has been to our advantage that we got a late start and our chemo is infused through the night to keep on the 24hour schedule. He sleeps through the worst of it and then he is UP AND AT EM.

Brage and Kurtis have been partying all day. First they do a little school together, and then it's off to games and craft. It has been very good for Brage to have a buddy his own age.

Our room mate is older and has been very sick. I feel very sad for him as he is very embarrassed about getting sick. Poor thing really needs his privacy. It is when they are suffering that they most need a private room. We've been trying to be quiet and use our best manners but still just our presence here in the midst of his misery is surely invasive.

One of the nurses who has been here longer than us (If you can believe it) came to say hi and tell us she remember's when Brage was first here...when he was a baby in a crib. Brought tears to my eyes.

Brage won the bingo game last night. It is televised from the third floor playroom and played every Thursday night. If you ask Brage what Thursday is he will tell you it's Bingo night at the hospital. No matter where we are he remembers this. It is the first time we've actually gotten BINGO. He was thrilled.

We will be discharged today without a doubt. His labs came back this morning almost identicle to admit. He will probably not start to drop til day 7 which will be Monday. For now I am enjoying all Brage's strength and stamina. You should see him race down the hall on his IV pole with Kurtis running behind him and the nurses chasing him to make him stop. (IV pole races are now against the rules)

Thanks for praying: PLEASE DON'T STOP!!
Love,
Tam

Wednesday, May 31, 2000 at 08:30 PM (CDT)

Day 2
2SW is as always full of activity night and day. Sleep was rare last night as the nurse entered and exited leaving lights on, doors open, etc. There is not the same concern here for patient and parent comfort. At three am they tried to give Brage the eye drops that he must get when on one of his chemo's. I finally insisted they stop trying when it appeared we were going to have to sit on him to get the drops in his eyes. At three am I am not the most cooperative cookie in the jar.

Today passed quickly. We managed to get our schooling completed. Today we introduced multiplication and Brage caught on before I even finished writing the examples on the board. I was amazed. I had anticipated this being a difficult lesson for him. He just "got it" without any explanation whatsoever.

We were blessed with a visit from daddy and Sarai. Brage and dad got to spend some guy time together and Sarai and I had some hot cocoa and girl talk. After they left we read books and then Brage went to music therapy. He had a great time and met a little buddy who is 8. His name is Kurtis and he is really a great kid. He came back to our room with us tonight and we put our time machine helmets on, turned them to 1400BC and went to Ancient Egypt. We learned about a family in Egypt and how they built their house, managed their property with the help of peasants and even how they managed their personal tasks. Very interesting for two boys who are fascinated with bodily functions.

Brage is handling the chemo infusions well. His port site hurts but I think that is due to them having to stick him a few times yesterday before getting a blood return. He is in an overall great mood and has been keeping very busy all day.

Thank you for your continued prayers and for caring enough to check in here to see how we are doing.
Tam

Tuesday, May 30, 2000 at 07:52 PM (CDT)

We are at All Children's in St. Pete for Brage's next round of chemo. He is getting his Ara-c and Idarubicine this round. These are some heavy hitters. He may only receive so much in his lifetime of the Idarub. so we keep close track of his given dosages. They require a new ekg and echocardiogram with each dose which they compare with the last to make sure there is no damage to the heart. The tests took all day. It is 8:45pm and though we started early this morning they are just now hanging his chemo. Hospital time....hurry up and wait. :-)

The Lowry Park Zoo was here with some of their animals. They did a demonstration on the roof top play ground when we first arrived. The lady who works for the zoo had a child with leukemia who was treated here two years ago. I hope one day I will be able to look back and to use what I've learned for good and to benefit people like me someday. I don't know how and I don't know when, but I imagine the Lord has something planned for me AND FOR BRAGE. It will be interesting to see where and what.

It is nice to see all of our old nurses. We have not seen them in 4 months. It was like a reunion in some ways. We've really missed them. We got to see some of the families we had not seen in a while too. One of our friends we've just discovered is here because they have relapsed.
It is devastating to watch yet another family suffer after what they thought was such a victory. A nightmare unfolding before your eyes. Please be praying for Erin. She is a beautiful young teenager.
Thanks for checking in.
Tam

Monday, May 29, 2000 at 08:00 PM (CDT)

We have had a lovely weekend. Brage has had tons of energy. I am packing now for his admit tommorow. If his counts are good he is due for his next round of chemo. If I had to guess I would say he is ready.

Our doctors have added a new doctor to their staff. We had the opportunity to meet her over the phone late Thursday night. She was very very sweet and helpful. We are anxious to meet her in person.

A new program has featured Brage on their web page. The address is http://www.geocities.com/makeachildsday/brage.html
He has already received two cards in the mail wishing him well. He loved it.

Please continue to pray for Brage's complete healing and for the other family's that are fighting this battle along side us with their little ones. Thank you. I will update all this week from the hospital.

Love,
Tam

Tuesday, May 23, 2000 at 07:46 AM (CDT)

Brage's counts at yesterday's clinic were low. His anc was 0. We are back to isolation and are expecting his hemoglobin to be dropping as well. We've called one of our two available donors to donate. Brage has been keeping them both very busy. This weeks donor comes all the way from Winterhaven to Tampa to donate. A sacrifice of her time and energy for which we are so very grateful.

Many times he is in need of a transfusion and it is too soon for our donors to give again, or he needs more than one unit at a time. He has been receiving a lot of "shelf" units which are donations from the general public. One of the concerns we have from all of the transfusions he requires is that eventually the body can start rejecting both rbc's and platelets. From what I understand, should this happen he would require "matched HLA" blood products which are very difficult to find. It is similar to finding a bone marrow match. He has been "reacting" to his recent transfusions so this may be a sign.

Please pray for his protection from all disease from these transfusions and for his body to not reject them and for his own little bone marrow to be strong and start "kicking in".

One of Brage's buddies from clinic stopped over to the house yesterday to visit. It was great for both the kids to see each other again and for his mom and I to be together.

We talked a lot about the new B-PAP drug which is in the third phase of clinic trials. This drug is being used to treat high risk leukemia and relapsed leukemia. It is an antibody and they only give very low dose chemo along with it. Low dose chemo is music to the ears of all parents of kids with cancer. (POKWC) One day we hope this is what they will use to treat all cancer. One day parents will look back and say, "remember when they treated childhood cancers with radiation and chemo?" ...and so we hope and pray that there is a cure on the horizon.

We had a nice weekend home. Brage's cousin was here for the night and they swam and ate, swam again, ate some more, read books, hid under the covers feigning sleep each time we checked. These two speak their own language. When they are together it is like they are in their own little world. Amanda is the best medicine for Brage. We are grateful to Danny and Lisa for being so generous with her...for sharing their time with her on their weekends off work...and for dropping off and picking up which is a haul across town.

We are reminded of all we are blessed with in the midst of our trials. God's promises are true. He provides all that we need.

Tam

Saturday, May 20, 2000 at 09:45 AM (CDT)

It has been a long and difficult week. Wednesday another one of the children we know from clinic went home to be with Jesus. His little life touched so many hearts in his brief time here. His parents never stopped talking about Jesus and the work He was doing in their lives. They were always willing to comfort and share their faith with other parents on the floor at 2sw ACH. Though I could not attend the service I heard that they celebrated his life and homecoming joyously. Please pray for Garrett and Tina in the coming days. Gant was their only son.

Though I know in my head that God's promises are true and that His will is perfect. My heart is retarded and screams out all night NO NO NOOOOOOOOO. It is such a long distance from the head to the heart.

The highlight of our week was a visit yesterday from "Miss Henriques". She was Brage's Kindergarten teacher and the only other woman that I've ever shared Brage's devotion with. He adores her and she and her husband truly brought joy into our home yesterday. I am so grateful for their friendship. Brage thinks Miss Henriques knows how to do everything!!!! She is the smartest person he ever met. I think he may be right. :-)
Tam

Monday, May 15, 2000 at 05:18 PM (CDT)

We are home and resting from our very very awful day. Before I tell you about it I want to tell you about a very special person.

There are so few heroes left in this world...real ones...the kind that fight for what is good and right. The kind that fight for those that are defenseless. I want to take a minute and thank a special friend for coming to the rescue of another family from our "clinic".
Kimmie is 16 and is battling leukemia. Her insurance company dropped her family and she was unable to continue with chemotherapy treatment until Steve Overton stepped in to help. A simple call to him for help and he stepped right up to bat. I just want to say thank you Steve; for going the extra mile for one of "our" kids. It was great to see Kimmie today headed off for her inpatient treatment and it was great to see your team in action at clinic. This was the highlight of our visit.

After checking counts, Brage was good to go for chemo. We gave him his anti nausia meds via IV and then tried to sedate him as much as possible. This is a chronic problem for us as the allowed dose is never enough for a will as strong as my little tiger. Even with versed and fetynol it still takes two of us ( the male nurse and I)to keep him in position and ON the table. He screams and cries and lifts his body up in the air. The worst part is I am expected to help force him to be still. Brage hates to be held down. I know he sees it as an all out betrayal when he realizes it is my arms restricting him.
I wonder how it is after everything he's been through that this child trusts me at all?

Gratefully Dr. B is as quick with this procedure as I am sure is possible. When that part was over Brage was still in hysterics which continued for over an hour. In the midst of them I realized he was having a "flash back" of sorts.

Back in January when he had an admit at All Children's he needed a cat scan. During the procedure he "freaked out". I never really knew why, just that he was scared. We talked later about how Jesus was with him through the whole thing and he seemed ok with it. What came out today that I didn't know (as he has not mentioned anything about this procedure since) is that he thought that when he was sliding through the cat scan machine that it was going to "chop him up into pieces". If you've ever seen one of these perhaps you will understand his fear. In the midst of his crying today (loud shaky uncontrollable sobs) he shared this with us. I cannot tell you how this shakes me up. I just watch him go through so much sometimes I forget how traumatic it really all is. I am praying that he will share his fears and that the Lord will be his comfort and strength. He cried even after they said we could head on home. Even with a promise for a visit to Toys r us he still cried for most of the ride home.

He is on oral chemo for the next 14 days. The schedule is so nuts but it is worth it to be home. 10 pills of one kind every 6 hours then two pills of a different kind every night, then two pills of a different every 12 hours for two days starting hour 25, then his regular meds at bedtime and at meals. Who would have thought someone like me who cannot even keep track of her car keys could get this straight?!! Good thing I'm relying on a miracle maker for help don't you think?
Tam

Friday, May 12, 2000 at 05:46 AM (CDT)

Thursday's clinic visit was short and sweet. Brage got only a "finger poke" for blood counts. His counts have dropped so we are back to giving the gcsf shots at home for a boost.

By Monday they must come up significantly if he is to be ready for chemo. He is due for a spinal :-( so we are going "over the bridge" to St. Pete clinic to see Dr. B.

Brage has been having a great week painwise but late yesterday started to complain of leg and foot pain again. His energy level has been high and overall it is hard to believe that this child is the same one from a month ago. Each cycle hits him so differently.

He did his school work yesterday with minimal complaining so today is official "park day". We are celebrating by taking a day off. Sounds counter productive, I know, but I want him to know there are rewards for getting the job done. There are other homeshooled children who will be at the park. I am hoping he will feel less isolated. It is hard to get him into a habit of schooling as our days are so hard to plan. This is beyond everyone's control obviously and it makes it hard for him to get in a habit of "school".

Please be praying for us on Monday. The spinals are painful and Brage has enormous anxiety once he realizes what we are going to do. I haven't told him yet and won't until we are there. The Dr. will also withdraw the fluid for testing, please pray it is cancer free. I also have my friends Patty and Leeanne heavy on my heart this Mother's day. Please keep them in your prayers...pray that the Lord will just wrap them up in his love and give them comfort.
Tam

Tuesday, May 09, 2000 at 07:05 AM (CDT)

Brage's clinic visit was uneventful. His counts were good enough this week for me to cut back on his home injections to every other day. We are thrilled as this is the most difficult for he and I. He is on the upward part past his "nadir".

He is enjoying his time home and the beautiful weather we've been having. Dad took him on a bike ride yesterday, played ball, swam, and then swam some more. Our own version of triathalon. Seeing him ride his bike was such a victory.

This Monday Brage will be having a spinal. In one sense I am relieved because when they inject the chemo they also withdraw fluid for testing. With his back pain I have had some concern. Please be praying that his spinal fluid will be clear of disease.

Thanks,
Tam

Friday, May 05, 2000 at 10:17 AM (CDT)

Yesterday was clinic day. I was headed over the bridge to St. Pete when Sarai started vomiting....Stomach flu is going around..I guess eventually it had to find us. So I turned the car around, called Omar, and headed home.

Omar had to cancel the rest of his day and take Brage to clinic. It turned (as always) into an all day affair. Brage needed platelets and spinal xrays. We are keeping an eye on some possible infection sites, but so far, he is ok.

I cleaned out the car and got to snuggle up with my little sick bunny. She is still not feeling herself and has been sleeping most of today away. She is so tiny that when she is sick she looks like a little wounded bird.

Both kids are very excited because their Pop Pop is coming to see them tonight.

Tam

Tuesday, May 02, 2000 at 11:08 AM (CDT)

Clinic was uneventful. The doctor ordered a lot of spine xrays for Brage. I am putting them off until later in the week. Brage's hemoglobin was down to 6.2. We headed to UCH for transfusion. They did not have his blood ready until 5pm. (We started clinic at 8:45am. We have gotten very good at hurrying up to wait and wait.)

The doc ordered a one hour post transfusion cbc. They did this at 9:30pm. The results came back at 10:30. His hemoglobin had come up to 7.6. Still too low in my opinion. The doc told the nurse to release him. I insisted we call her back. The cut off is usually 8 and Brage is still on his downward spiral. I knew we would only be back in the next day or two. Here he is with port accessed and a unit of blood waiting for him.
The doc insisted a one hour post cbc does not give accurate results. 4 hours post cbc is indicative but not one hour. (So why do we bother taking a one hour cbc then?) After calling Omar, waking him up to help me decide, I insisted we wait the 4 hours (which 2 had already passed at this point.) At 12:30am his 4 hour post cbc was identicle to his 1 hour. We called and woke the doctor up. She ordered the transfusion.

Around 2am Brage awoke screaming. He rolled around this way for the next hour and half. His legs and feet were causing intense pain. His blood pressure went way up and it was impossible to console him.

We woke the doctor up again.

She ordered demoral and wanted us to keep infusing the blood. Within 5 minutes of the demoral Brage was calm and pain free. But of course wide awake. He finally fell asleep around 7am this morning.

The doc showed up at 8:30am looking about as well rested as I did. I really did feel bad for her. After prescribing morphine for the pain and other tests she let us go home. I felt guilty knowing I was going home and she still had a full day of work ahead of her. They don't have it easy.
Tam

Friday, April 28, 2000 at 08:43 AM (CDT)

Brage finished his chemo and had his counts drawn. They wanted to keep him for a transfusion. I was suspicious because he usually does not bottom out until day 7 or 10. I asked them to redraw the labs. His counts came back low but not critical so they discharged us in the late afternoon.

Yesterday marked 5 years since Brage's first diagnosis. Hard to believe he has been fighting this monster this long. He was two when he was first diagnosed. A month after his second birthday. He was misdiagnosed for so long that we almost lost him by the time we were referred to an oncologist.

I could not even update yesterday. I just didn't know what to say.


I am just so grateful to still have him here. Each day is priceless. Sometimes I am running about my day, attempting normalcy...and then I stop. I cannot afford a normal attitude. Each day needs to be treasured. Each event absorbed to it's fullest. Each precious little hug and kiss forever tatooed in my heart.

Tam

Wednesday, April 26, 2000 at 08:35 PM (CDT)

Brage's treatment went well today. Overall it was pretty uneventful. He even managed to get in a full day of school work. I was amazed at how well he was keeping up.

Brage got a chance to play with the Starbright system which lets you talk to other kids in hospitals around the country. The kids can see and hear each other. Very neat. This is the only hospital in our area with Starbright.

My girlfriend gave me my gold ribbon this week which I forgot to mention. It represents childhood cancer. I am not much for accessorizing but I think I will wear this. 1 out of 335 children will be diagnosed with cancer. Hard to believe the numbers are that high. Childhood cancer rates are on the rise. We lose 15 of our kids each year for every 1 AIDS patient. Yet we spend twice as much on AIDS research. I can't help but constantly feel like the clock is ticking and and it's a race to beat the clock. Praying for a cure. Thanks for listening.
Tam

Tuesday, April 25, 2000 at 09:49 PM (CDT)

Brage's second day went reasonably well. He woke with an upset stomach, then nausea, then vomiting. He then fell back to sleep for the rest of the morning.

When he woke the second time he was a different kid. He played his magic school bus cdrom, watched the same video 6 times in succession, and welcomed Rusty the golden retriever into his room. Rusty came right in and laid his head down on the bed next to Brage. Rusty is part of the Pet therapy that they have every Tuesday morning here.

Later Brage assaulted his mother with serious oreo cookie breath. He got a big kick out of this and we enjoyed a giggle fit. This is pure joy which you know if you've ever heard Brage laugh. He laughs straight from his heart and soul. Music to my ears.

He was very tired this evening and even had to tell his dad it was time for him to go home because he needed to sleep.

We are enjoying our deluxe accommodations as well as the cheery attitude of our nurses. It seems someone is always asking me if I need anything. I am still not used to it I guess. There is a thingamajig in our "suite" for me to pull out and sleep in. I still however manage to squeeze in with my little angel. This morning found me at the end of his bed with my legs hanging over the foot board. He thinks that is a real hoot. I think he is a bedhog!

Keep praying and thanks for hanging in there with us!
Tam

Monday, April 24, 2000 at 08:59 PM (CDT)

Hello everyone! Today is admit day. Brage is due for a round of VP16 and Ifosomide. These are the "close ops" drugs. The ones that they roll the "crash cart" out in front of your door and bring all the emergency meds into your room for.

We had a rocky start today. Once again a confrontation with the person writing the orders for chemo. I make a request that they be written the way the protocol calls for. We have a debate in which I am forced to insist I want Brage to receive the drug the way he always has, the way the other hospitals administer this particular chemo. Eventually the doctor gets involved and has them written the way I've requested. The pharmacist who works for ACH loudly in front of an entire waiting room full of people insists everyone else in the world is doing it wrong including the very hospital he works for. At this point my heart is beating fast and I'm perspiring. And the day hasn't started yet.

I am continually forced to fight battles on every level of his care. I am frustrated with the combative environment. The doctor himself is pretty oblivious to the extent of this and rely's pretty heavily on his support staff. I hesitate to be bringing this up when these things happen because we have so many other serious issues to discuss when we get the chance to speak to the doctor. It seems so petty to be asking that his staff respect our wishes and behave nicely. We have caught more than just a few errors from watching his protocol carefully.

Sometimes I find myself so angry that I have to constantly defend our rights as Brage's parents and advocates. I have to remeind myself over and over that being angry doesn't get us anywhere. That everyone has bad days from time to time. Lately I find myself really empathizing with the doctor.

So many of our kids (clinic friends) are at critical stages and some losing their battles. I wonder....what must it by like for the doctor's. How much do they feel responsible for. What must it be like to go home at night after having to tell parent after parent the bad news. Watching the faces fall apart before their very eyes. Knowing what will happen before they even say a word. With that in mind I ask that as you pray for Brage today, you say a special prayer for our Doctor's. That the Lord would enable them, give them wisdom, keep them alert, encourage them, and give them peace those nights that they feel they've failed. Thanks.
Tam

Thursday, April 20, 2000 at 09:24 AM (CDT)

Monday's counts were stable. We had not been to the Tampa clinic in over a month (since we've been going to St. Pete so we can see Dr. B.), and the nurses were surprised to see us. Based on the counts it would appear that Brage will be "ready" for chemo admit this Monday.

His pain has not yet subsided but we are learning to manage it a little better. The food cravings are still strong. All night long my little guy talks about food in his sleep. The decadron should slowly start to wear off this week. I just keep thinking that I should be glad he is eating right now because I know he will lose his appetite after Monday. What a rollercoaster.

Being home is such a sweet blessing. My sunflowers greet me each morning and the sweet smell of Jasmine each night. There IS no place like HOME! I can see all the tension of the past month and a half starting to just melt off.

Brage has begun to ask more questions. "How did I get this leukemia anyway?" and "when will my treatment be over?" I am answering them as honestly as I can. I guess I should be MORE surprised that he has not been asking questions all along. He is so compliant and eager to please that he just for the most part goes with the flow. Maybe it's just that this is all he has ever known....familiar territory...that he doesn't ask more. But when he does bring up these topics I choke up a bit.

For those of you who have been praying with us for Michael. He went to heaven yesterday morning to be with Jesus. Thank you for caring and praying. Though this side of heaven we may never understand why he had to go, his parents have said they are glad his pain and suffering is over. Please pray for Michael's parents (Patty and Den) as you are praying for Brage. I continue to be in awe of the courage God has given Patty.

Psalm 116
I love the Lord for he heard my voice;
he heard my cry for mercy.
Because he turned his ear to me, I will call on him as long as I live....
BE AT REST ONCE MORE, O my soul, for the Lord has been good to you.
Psalm 117
...For great is his love toward us, and the faithfulness of the Lord endures forever. Praise the Lord.

Sunday, April 16, 2000 at 06:06 PM (CDT)

We are unpacked completely (finally) and settling back in. Our home has never felt so...well...HOMEY! Our shower is still missing from our bathroom but within the month it should be restored. Sarai is very busy loving on all her baby dolls and our pets, Mimi and Tink, are glad to have us back in the fold.

Brage's pain persists and he has not left the couch it seems for weeks. I worry he is not getting enough fresh air and try to persuade him to come out into the garden.

His artwork was chosen for this years Christmas card's at the Children's Cancer Center. We were much more excited than he seemed to be though I expect when he sees them printed up he will appreciate the honor that it is to be chosen. He drew a beautiful manger scene. Of course most of you will receive one this December and will see for yourself how inspired this piece is.

Tommorow should be a simple clinic visit for counts. Tonight ends his final dose of Dexamethasone for this round. (AMEN) It has been a trying 14 days with this drug. It is a mood altering drug and can even alter the moods of those around the patient taking them!!!

I will post an update tommorow with results from clinic.

Tam

Tuesday, April 11, 2000 at 07:53 PM (CDT)

It was an exhausting clinic yesterday. We arrived in the morning at our scheduled time. We happened to run into Dr. B as we were coming into the building and Brage was crying. When he asked why Brage told him his spine hurt. Brage had been complaining about his tail bone for some time. I could tell what Dr. B was thinking just by the way he looked at me. We got to the desk, signed in and waited. In the meantime the Easter Bunny was in the waiting room posing for pictures with the other patients. Brage had no inclination to notice. I finally "nudged" him over and he sat reluctantly for a photo. He couldn't have looked any grimmer. We were finally called in. Brage was accessed, labs drawn, and left to wait for the doc. Though his labs were within the range needed to give chemo Dr. B said, "You know this means we will have to do another bone marrow aspirate". I just nodded because what else can I do? So here we go AGAIN:
This has got to be one of the most horrific procedures. The entire process seems prehistoric as painful as it is, as thick and awful looking as the tools are.....like drilling into the bone of my poor baby boy.
and then the endless wait.....By the time it was all said in done I knew I aged an extra ten years. The results were good. AMEN it was clear but I am so un-nerved and exhausted that though my heart was screaming out in relief the rest of me was just suspicious.
Brage then got his chemo and I continue to give him his daily doses at home. We are due back to clinic Thursday, then Monday, and then inpatient again in two weeks for a round of VP16 and Ifosomide. (chemo)

The good news is we are back in our home tonight. It has never felt so good. Sarai is happy to be back with her baby dolls and has already tried on everything in her closet. Brage has not left his favorite place on the couch.

Friday, April 07, 2000 at 02:45 PM (CDT)

It has been an interesting few days. Since Brage's chemo on Monday and the doses I give him orally at home Brage has been very uncomfortable. It started with sleeping most of the day away. The fatigue still persists but now is coupled with severe bone pain that keeps him awake ALL through the night. He cannot even chew a peanut butter and jelly sandwich without gasping out in pain. I am frustrated and called several times since Monday. I finally spoke with Dr. B this morning at 10am. Brage had finally fallen asleep at 8am out of sheer exhaustion. Dr.B insisted I wake him and get him to clinic immediately. So I dressed them and got them downstairs to the car and loaded them up. As I entered my car I noticed a heavy brick on my seat. I thought to myself...nice gift Omar, I had imagined it was some little joke. I moved the rock and then sat in the drivers seat preparing to start the car. I then noticed that everything was out of my glove compartment and my coin box was missing. I then noticed that everything was pretty much torn apart. It still didn't click however until I tried to put my key into the ignition that was no longer there. So now I am sitting in my seat with my sick little one in the seat behind me and Sarai singing merrily away. I had the overwhelming urge to just laugh until I cried. The hotel provided a shuttle to Omar's shop so I could get his car and get Brage to ALL CHILDREN'S. But here I sit thinking WHAT NEXT????
Dr. B gave Brage an exam and determined that the pain is acute neuropathy from the Vincristine. He prescribed demoral and a drug which helps to eliminate the problem. It is a seizure medication but they often use it when a patient has severe neuropathy. So I have an extra two little orange bottles added to my ever growing collection. I am just grateful that I didn't have any of his medications in my car. At clinic we got to see our friend Ian and his mom Wendy. Ian has decided to proceed with treatment so it looks like the kids will have the pleasure of each other's company again during inpatient treatments.
We may possibly be allowed back in our home on Tuesday of next week. They are waiting for the tests to come back from the lab.
Brage is presently resting and I imagine he will be sleeping soon. I am sitting here thinking I need to call the police and make an official report about the car...but perhaps that can wait a bit. My insurance company is going to regret the day I ever walked through their doors. (sigh)

Tuesday, April 04, 2000 at 09:28 AM (CDT)

Good morning! Clinic yesterday was long and confusing. First we were told that the doctor we prefer to see was in Tampa clinic, then we were told he would be in St. Pete but covering both clinic and hospital because one of the other doc's was on a two week vacation. So our early morning session turned into an afternoon into evening session. Brage's counts were good enough to get his chemo but we discovered that the chemo drug he is supposed to get is not readily available. There is a shortage all over the country. (geeeeez) So they substituted another drug and then I discovered they had been making these substitutions all along they just had not told me. When I protested (they are used to this by now) I was told that they are similar enough to not make a difference. The drug that his protocol calls for works for a longer period of time than the one we are giving him, and that is the only difference. To me that seems like a very big difference but the doctor assured me that it is not. He said it was basically a theoretical difference. This is the doctor who I do happen to trust as much as I can possibly trust any at this point. Ultimately it is in the Lord's hands...and beyond my control. I think that is one of the biggest struggles for me....all of this, every ounce of it is out of my control. There is nothing I can do to change it or make it better. I am so greatful that we serve a loving and powerful God. Knowing who He is makes it easy to trust Him no matter what comes. When everything seems to come apart and nothing fits back together it is a blessing to remember that He is on night watch...and I can sleep in peace.
When we first arrived at clinic I saw a friend there with her son. Brage and Ian are the same age and had both relapsed. They spent much time together in the hospital as did Ian's mom and myself. She was there with me the night and morning when Brage had appendicitis and we had not yet figured out in spite of one test after another what was wrong. First we thought it was toxicity to chemo and then something else. She prayed with me and even left me some scripture verses on our bed when Brage was in surgery. Since then their family has been praying for Brage regularly and even when Ian finished his treatment kept in touch. So I was simply devastated when she shared with me that they were in clinic because Ian had relapsed yet again. Words were unnecessary after that. Our minds just "spoke" to each other as our hearts grieved together. The doc has given them less then 10% chance this time and Ian is not sure he wants to pursue any treatment. Please be praying for this family as you pray for Brage.
Tam

Friday, March 31, 2000 at 10:21 AM (CST)

Hurray...We had a lot of surprise guests for Brage's birthday up on the third floor of UCH. We ate cake and then ate more cake. We ate way toooo much cake. But that's what birthday's are for, no? And then the best present of all the next afternoon...Brage got his walking papers.
After his platelet and rbc transfusion his hemoglobin came up to 9 (normal 11-14) but his platelets barely budged. His white cells are creeping up still ever so slowly. However, his fever stayed down and the over all agreement was he would be better off at home. Of course home for us is still the hotel so we are confined to our room even here. Brage is still wearing his mask when indoors around people and he hates it so basically we are just hanging out in this ever shrinking room. Brage's discharge orders were funny...to me anyway....across the top the doc wrote AVOID INJURY! I am developing a pretty warped sense of humor I know, but does anyone else see the "ha ha" here??? Our next clinic is Monday and he is supposed to restart chemo. I suspect his counts will reveal that it is still way too soon. He could sure use a small break.
Tam

Tuesday, March 28, 2000 at 12:00 PM (CST)

BRAGE IS 7 TODAY!!!!
We are still here at UCH. Since Saturday Brage has continued with fever and a bone marrow that just does not want to kick in. Even after two transfusions of rbc's and one of platelets his hemoglobin is down to 7 and platelets are 10. The platelets are at a critical level and he will get both rbc's and platelets again today. His last chemo round hit him hard and it's just taking awhile to recover. His white cells are ever so slowly creeping back up....still so low that he has virtually no defense system of his own. His fever persisted until today at 11 when it finally broke after 7 days. They will start him on some meds today for his sinusitis as well. Over all he remains in good spirits content to sit in bed and play his Nintendo.
He could not sleep last night. He was so excited that tommorow (today) would be his birthday. He was up until 12:30am. He kept telling me and the nurses that when he openned his eyes his room would be decorated and all the party people would be here. We waited till he was snoring soundly and then tried to make half that dream come true. The nurses and I stayed up blowing balloons, decorating the room as he slept, and making a Happy Birthday sign for his door. The nurses here are the tenderest hearted people in the world. One of his friends (a fellow cancer patient) Chris came by this morning to wish him a Happy Birthday. (The brightest part of his day....He was sooooo glad to have a friend here) They sat together on his bed and played Banjo Kazooie while I talked with his dad. These children are all such very special kids. I am so glad they have each other. We are celebrating BIG here on the third floor of UCH. You are only 7 once ya know.....Thanks for celebrating with us and for all the kind notes and guestbook entries.
Tam

Saturday, March 25, 2000 at 10:27 AM (CST)

Thursday night after Brage's transfusion his hemoglobin came up to only 7.2. (normal is 11-14, but when he was admitted the day before he was only 5.3) They also gave him a bag of platelets as his level was at 8,000. His platelets rose to a stable level, not normal, but safe. By early morning his temp started to rise. He has absolutely no white cells to fight infection. By 11am he started with chills and though his temp was holding he was in pain with body aches. He fell back asleep and then woke with convulsions. His temp jumped up and he appeared septic. The intensivist on the floor came in to assess and moved him into ICU. They drew cultures and started in with an IV antibiotic triplet. His labs came back with his hemoglobin at 6.6. and his platelets back down to 22,000. They ordered another unit of rbc's which didn't arrive til after midnight. By the afternoon he was stable and even appeared a bit perky. Thank God. It was a frightening morning. We are waiting for cultures to come back to see what is up. It is anybody's guess what is going on. One says possible toxic shock the other thinks, basic infection, who know who knows.....They had mentioned possibly transferring us back on to the main floor today but have changed their minds and are going to keep him in ICU one more day just to be safe. We have to stay in the hospital at least until they are done growing the cultures, another 48 hours and then depending on what they find and how he is doing we will know where we go from here. If there is a blood infection as his doctor suspects we've bought 10 -14 days and then the rest I can give him IV at home. His birthday is Tuesday so it looks like either way he'll spend it here. His temp broke this morning and to my mother eye he looks better...but....well we'll know soon enough. Our favorite nurse is here with us. She was our first nurse way back in 1995 and we love her. Her name is Hilma and she has a gentle touch as well as really being a skilled nurse. So for the moment we are in safe capable medical hands as well as always secure in the hands of our loving Father..the greatest healer of all....keep praying!

Thursday, March 23, 2000 at 07:53 PM (CST)

We are at University Community Hospital. We started our day at the Tampa Clinic. After accessing Brage's port and getting labs we discovered his hemoglobin was 5.3
and his platelets were 8000. Both dangerously low. This of course explains the severe headache and body pain. Not enough oxygen getting to the brain and other parts of the body. I wish they kept a closer eye on him sometimes. So off we headed to UCH only to discover that the directed donation we thought we had waiting for us had been released to the blood pool and had been transfused already. Thanks to Joanne, our Tuesday donation was ready and by 5:15 the blood was up and pumping. We will still need another unit of rbc's and then platelets so we are in for at least the night. It's amazing how you can get up early to get started yet wait all day to begin anything. The medical clock has peanut butter hands as my sister would say. Brage's temp was up in the 100's all day and he is very tired. He couldn't even walk up to the floor but had to be pushed in the wheelchair. Once here he was disappointed to be waiting around and the two nintendo machines on the floor were in use most of the day so keeping him entertained as grumpy as he and I both felt was not easy. We have heard from the contractor that they cannot even begin our house until April 4th. We will have to get adjusted to staying in the hotel for a longer time. Unfortunately this means we will not be home for Brage's birthday. We are all on edge lately. Please pray for an extra measure of patience for each of us.
Thanks,
Tam

Wednesday, March 22, 2000 at 09:09 PM (CST)

We have been 14 days living in a hotel waiting for our home repairs to be made. They have yet to even start the work. The kids think it is a hoot but the "caved in" feeling is beginning to wear on me. Tommorow we return to clinic. It is obvious Brage will need "fueling" up. He is pale, his tongue is white, he is short of breath, has pains in his body, and is covered in bruises. The tell tale signs of a need for both platelets AND red cells. I am planning on spending the day tommorow with him in which ever hospital they choose to send us. Fortunately Omar's mom is in town so Sarai will be spared this procedure.
Brage is participating in a music recording of Christmas songs. The Childrens Cancer center is sponsering the session. Brage has a wonderful voice and he loves to sing. I think they will use the recording as a fund raiser.
In a week Brage will be 7. I am trying to think of all the ways I can make this a special birthday for him. If anyone has any ideas I would be thrilled to hear them.
Thanks again for tuning in.
Tam

Tuesday, March 21, 2000 at 09:54 AM (CST)

Monday's clinic was uneventful. Brage's counts were within reasonable limits. He will need a platelet and red cell transfusion by Thursday the latest. I continue to give him the gcsf shots to boost his white cells. All we can do is wait for those to "kick" in. Overall he continues to be patient and strong though he has moments of frustration.

We have had some really awful news about a good friend who has been battling her cancer as long as Brage has. Her mom was the first parent to really reach out to us and offer support. THe doc's told them this month that their fight is over. Please be in prayer for the Mitchell family. Kelley has been a gentle and sweet influence on all of us and my heart is aching for her and her family.

Thank you for continuing to read our site and keep up with our family

Wednesday, March 15, 2000 at 12:41 PM (CST)

Day 3 inpatient chemo. Pretty uneventful round. No major reactions other than fatigue. Brage has had some sinusitus that we are looking closely at. Being "on the other side of the bridge" as we parents call it is like being in a whole different world. We are stashed away in a corner. The doc whizzed in and out of here so quickly this morning that I missed him when I went to the bathroom.
Brage's counts have not started to dip yet. We will start the downward spiral in a few days. As always this will mean a certain level of isolation from the rest of the world. It's hard to imagine being any more isolated than we already feel. I look out the window and see the world just moving on as always. Not that I expected any different...it is just an interesting contrast to our lives. I recognize this feeling from the first time around so I will not let it get me down. I am ever reminded of all of our blessings.
We are currently living in a hotel while work is being done in our home. When we leave the hospital this week we will return to the hotel. The children think this is quite a hoot. Thank you to Aunt Lisa who sent us a beautiful basket of fruit to offset all the fast food we've been eating. Thank you to Missy Tish who is watching our lil Tinker Bell as if she was her own.
Though it is so easy to feel forgotten, when I check in each day on our website and see we've had more visitors, I know as surely as I know my name that we are not forgotten. That we are loved. Thank you for your faithfullness and mostly for your prayers.
Firmly in His hands,
Tam

Monday, March 13, 2000 at 08:14 PM (CST)

Brage's counts were just high enough to begin his next round of chemo. We are at St. Joes and have been here since this morning. It is 9pm and they are just starting his chemo. His protocol calls for an ekg and echocardiogram between each round of Idarubicine. This is one of the drugs that can affect the heart so they must assess any damage before continuing. There was some confusion as to Who was supposed to contact Who regarding the results so the nurse was just now given the "go ahead." What's one more day?? Brage is a trooper. He passed the day watching videos and playing nintendo and flight similator. Sarai is his little representative. She asks the nurses a dozen qualifying questions everytime they enter the room. "What's that for and why are you doing it?" she wants to know. She is keeping an experienced and apt eye on her brother's care here.
The nurses are very nice and the atmosphere is so peaceful here. I am beginning to miss some of my favorite nurses from ACH, but we are much more comfortable here close to home.
Thanks to everyone for keeping in touch and praying for us.
Tam

Tuesday, March 07, 2000 at 06:08 PM (CST)

We had a clinic today instead of the usual Monday as yesterday was my birthday. Brage's counts were reasonably good for just having a spinal last week. His chemo this week has been oral and I was able to give it to him at home which is great except for waking him up at midnight and then early morning for his scheduled dose. With this drug he had to avoid direct sunlight, drink lots of water and avoid driving and operating heavy machinery. (He got a kick out of that) He absolutely refuses to swallow the nine pills when he first wakes so it is a battle of wills during those very late and early hours.
We had a couple incidents last week as we were walking through a mall of children saying things that embarrassed Brage about his head. Though he handles it well for the most part, I know that look in his eye. The discouraged one. I want to turn around and ask the parents to keep their children from pointing at my son and saying the things kids say.....{but i know they are just kids}.
We were turned down for the MRD testing. I found out today when I called the doctor on another matter. It is a research test and only available to children on study at St. Judes.

Love,
Tam

Tuesday, February 29, 2000 at 04:04 PM (CST)

We spent a great weekend at Spirit of Suwannee River music park in a tree house. We went horseback riding and to a "picken shed" where we listened to music and hung around a campfire. It was a great time. Brage saw a horse that was only hours old and drove a golf cart.
We came back Monday to St. Pete as Brage was due for a spinal. (It was as awful as it sounds. His spinals include chemo and an extraction for test purposes) All the things nightmares are made of. He is so patient and compliant normally but he is very stressed lately about these procedures. We are on the edge of a mutiny. And I cannot say that I blame him. Please pray for a complete healing and that doors will open so that we can get MRD testing available currently only for experimental trials.
Thanks,
Tam

Thursday, February 24, 2000 at 01:25 PM (CST)

Today's clinic went well. We were in and out in less than an hour. Brage's counts were good. He seems to have a bit of sinusitis that we are keeping an eye on.

We coordinated his spinal for Monday with the head oncologist. We are due in the St. Pete office at 2pm. (which means no eating or drinking after an early breakfast.)

His hair started to fall out again today. He hasn't noticed it yet. I keep swiping it away from his neck and face when he is not paying attention. He will be sad when he realizes as he was so proud of the new growth. He has gotten it in his head that when your hair is gone you become weak. (This is from the story of Samson and Delila in the Bible) I keep telling him he is sooooo strong.

It was a beautiful day here and we spent it at the zoo. We love it there. Especially the manatee exhibit. Sarai loves the section where the birds drink nectar out of your hands.

Tommorow we find out whether Sarai has to wear a cast any longer on her arm. She will be glad to be rid of it as will I. She looks like a wounded little bird.

Sunday, February 20, 2000 at 08:22 AM (CST)

It has been a sad week. On Wednedsay my grandfather passed away and Friday was his funeral. I wasn't sure how to explain to the children and had planned to only say that Grandpa went to heaven. But Brage surprised me as always the day of the funeral when I was in the process of explaining. He said, "mom, I know all about that, my grandpa died and went to heaven." I asked him how he knew and he said I told him already. It's like this child sees right into my soul. I suspect that he overheard some of the conversations we adults were having and put it together. Go figure.
On Wednesday Brage began to look like he could use some "fueling" up. This was expected after the chemo. There is a cycle where within 14 days he hits his nadir (bottom). I was keeping a very close eye on his energy level and thinking we would very soon end up in the hospital for transfusion, when Sarai began to swing from chair to chair until one toppled over on her. We ended up in the ER with her getting xrays and ultimately a cast.
On Thursday's clinic Brage was, as I had suspected, ready for a transfusion. We were not able to coordinate in time the direct donated unit so we went over to University Community Hospital for a shelf unit. UCH at one time was like our second home. When the elevators openned on the third floor at ped's there were familiar smiling faces sitting behind the station. On top of the desk sits a photo album filled with pictures of kids who've had hospital stays. Brage's photo is on most every page. I flipped through the pages simply amazed. There he was at first diagnosis, there we were for a baby shower they threw for me, there we were after Sarai was born, there he was for Christmas, then his birthday.....and so on. (They actually gave me a big room and let me set up a bassinet in it for Sarai when we had long stays. I am sure it went against the hospital rules but they bent them and even broke them to make us comfortable.) They have always been so wonderful to us.
Our nurse for the transfusion was "nurse Nick". Later after shift change Kathleen took care of us. They are both like old friends. After it was over(takes 6-7 hours between cross and type, transfusion is 4hours, then one hour observation) we drove up to my grandmother's and spent the night at a little hotel in town. The children were a bit bewildered but happy to see their uncles and other family.

Monday, February 14, 2000 at 02:03 PM (CST)

Brage's clinic this morning went well. He did not need a transfusion today, but will probably need it before the week is up. We went to the blood bank to update Brage's file so that we could try again to coordinate the direct donations. He has had so many units of red cells and platelets and will need countless more. We would just like to minimize the risk as much as possible. Brage's energy level is still up. He has not hit nadir yet. I continue to give him the gcsf shots until he has hit bottom and then recovered. He is so patient with me. So willing to sit still and let me do what he knows I hate to do to him. A true soldier.
We are celebrating Valentines day by cuddling up on the couch in our matching pajamas (all four of us) and eating chocolates.
Hope your day is just as wonderful!!!

Thursday, February 10, 2000 at 07:30 AM (CST)

Day 4. Brage has handled this round particularly well. Though he suffered through nausea and a slight reaction it was not as bad as it has been. He is tired and pale but other than that fine. As I type he is sleeping. We stayed up late watching Free Willy. One of the benefits of hospital stays is that we can stay up late and have fun and that he gets me all to himself. (This is Brage's comment)
I am waiting for the doc to arrive and tell us if and when he will be discharged today. I am expecting to be home this afternoon. Our nurses here were very nice, particularly Stephanie and Dani. It is peaceful and having your own room is all I imagined it would be. The absence of chaos (especially throughout the night)was welcomed. Several people stopped in while we've been here to ask how we are and if we need anything. You don't realize how important those kindnesses are until you go without them. The only complaint Brage has had is that the food is awful and he is right. This is easily remedied with take-out, however, he does not have much of an appetite anyway. I am sitting here thinking I must start packing and this is funny because usually by this time.....I have an "I must get out of here mania"...and I am well packed before the sun is up.

Tuesday, February 08, 2000 at 09:24 AM (CST)

Brage's second marrow aspirate results were clear. Dr. B performed the aspirate and viewed the slides. We are waiting for confirmation by this week from the pathologist. We are presently at St. Joseph's hospital for admit chemo. (hurray hurray!) On admit day patients first go to clinic. Counts are drawn, the doc examines the patient, and orders are written. Then we bring the orders to the hospital for the nurses to follow. Yesterday was our first day. We were settling in nicely enjoying our privacy. At 7pm we were 3 hours into Brage's first chemo drug infusion. I was reading the protocol (I have a copy) and while reading I realized the orders were written up wrong. They had just infused a one hour chemo over three hours. My mind flashed to earlier in the day when I watched the orders being written. The pharmacist who wrote them must have slipped up a line while reading because the line above reads prehydration for 3 hours. Then very clearly infusion of vp16 over 60 minutes. Perhaps not so significant, however, the doctor told me today that it could lose it's effectiveness the longer it is infused. So, had I not been reading the protocol, the orders would have been followed and the first chemo infused over 3 hours each day rather than 60 minutes. They changed the orders this morning, but I cannot help but feel less confident today than I did yesterday. Each day a piece seems to chip away. Please be praying that God will protect us in the midst of human error and imperfectness. That the doctors will be given wisdom and that they will turn their full attention to Brage's needs and treatment. That doors will open at the right medical center for us. That we will be seeking God's wisdom and direction, following his perfect will for Brage. Pray that I will not be ungrateful to the doctors and hypercritical, but wise, contolled and able to discern. Thank you for your faithfullness in holding up our family in prayer.

Tuesday, February 01, 2000 at 11:27 AM (CST)

Deja vous. Brage's counts were too low again yesterday to be admitted for chemotherapy. I asked the oncologist why they were not coming up. She said that often the second time around (relapse treatment) the marrow has little reserves left to respond. I called Omar and immediately he called the head onc. Dr. B ordered a bone marrow aspirate right away. Those words send chills up my spine. First fear, then shock, then the inability to articulate words as you bite the inside of your cheeks to keep from exploding in tears. The onc prepared for the procedure and we tried to mentally prepare Brage. He has had this done more times than we care to recall and when he heard he just cried. This is a very painful procedure. A long needle is inserted into the back of the hip bone and marrow is extracted. It is not a quick thing and this particular onc is not the most accomplished at it either. Brage screamed through the entire process. When I looked at the syringe I could see that there was only a miniscule amount extracted. I asked if that would be a sufficient sample and was told yes. We waited an extremely long 40 minutes for the results. (It is true, for parents, the waiting is the hardest part.) This onc came and pronounced the marrow as clear. I insisted again, "are you certain we got a good sample" Again I was told yes. We went home relieved yet concerned about his counts not recovering and the chemo being stalled. This morning my gut would not let me rest easy. I asked Omar to call Dr. B (the head onc) and ask him to review the slides and have the pathologist review them as well. What do you think he tells Omar? There wasn't ANY marrow on the slides. He wants me to bring Brage back to St. Pete to repeat the procedure. At the moment it feels like more than I can stand to put Brage through this again. How do I explain our inadequacies as adults. I am disturbed by the assurances of the oncologist yesterday. My confidence in her is waning and I am angry that Brage will be the one to pay the price. Please, please, please be praying that the results will be a clear marrow. Pray that our trip to St. Pete will be safe. Pray that Brage will suffer less pain. Thank you.

Tuesday, January 25, 2000 at 08:47 PM (CST)

Monday Brage was sent home without being admitted to the hospital for treatment as planned. His counts were way too low. I once again expressed my concerns about the cbc machine being inaccurate and was promised that they would double check Brage's counts at the hospital. His anc was below the required amount for chemo. Dr. Rossbach is having us come back on Monday to try again. If all goes well we will be in (admit for chemo)next week instead of this one. We need to keep him isolated from people as his anc is the count that indicates whether his defense system is up and running. I also once again told Dr. Rossbach that Brage is asking to go to bed at 6pm and will often just pull up a blanket on the tile floor and be asleep within seconds of his announcement that he is tired. Dr. Rossbach suggested that the chemotherapy is just taking it's toll. I'm not sure what is what. His pain and fatigue worries me but I don't think anyone has the answers I am looking for.
We have not unpacked our bags but are glad to be home together enjoying this rare bit of cold weather we are having. Our fireplace is once again roaring and we've brought out the snuggling blankets for the couch. Brage has been spending a lot of time drawing. His work is really great. He will sit on his own for great lengths of time creating his own designs. It's good to see him take an interest in something that he enjoys that I have not had to "pursuade" him to do. Sarai made it to her ballet class this week and is very excited that they already are measuring for this years recital costume. Was it only a year ago that we were getting ready for her first one??? Seems like a lifetime ago.

Thursday, January 20, 2000 at 03:02 PM (CST)

I cannot believe that January is almost over. where did it go? This month has been a wave that has washed over me and left me feeling beaten and tossed around. Brage is finished with his IV antibiotics. A huge relief. I no longer have to give it to him round the clock and he is thrilled to have his port de accessed. All the medical items are cleared from my counters and my kitchen looks once again like a home and not a pharmacy. (Brage's oral meds are stored in a cabinet.) He has been unusually tired, asking to go to bed before 7pm. Sometimes he just falls asleep mid-day. There are days he does nothing but tell me what hurts and how it feels. We describe pain different ways. Sometimes it's a "kapoom kapoom" other times it's a "punching owie" other times it's a "stabbing". I have to be creative about how I ask so I do not "suggest" how it feels. His chemo on Monday went slightly better. He is still distraught that they have "renovated" and changed the side of the clinic for visits. Sunday night before his visit he did not sleep. All night long he "anticipated" the shot he would get and how different everything looks now. We walked him through the old side on Monday just to show him it is still there. Just being used a different way. He cried and refused his shot again, but eventually was pursuaded. He kept telling Cyndi (our nurse) that he was too nervous. Dr. B was there and I was glad. I discussed with him Brage's pain and tiredness. He feels that it is from the chemo, but if it continues wants to do another BMA. (bone marrow aspirate) This is not what a parent wants to hear because that suggests possible leukemic cells. Surprisingly we are due back for an admit on Monday. (So soon??) Brage's hunger is ferocious. The steroids are taking effect and along with the cravings come the mood swings. I keep telling myself that it's the medicine and not my little boy. On an upnote my sisters have been spending a lot of time at our house and my mom popped in for a quick visit. Montana went back to school on Monday. Kimmy is staying for good. She has an apartment up the street. The kids just love being able to see them all the time. I, of course, am enjoying the company. School is going well. Brage, though reluctant, catches on to everything quickly. I don't even feel like I am "teaching" but only presenting material which he just amazingly digests. Sarai is benefiting from it also. I often hear her repeating to herself a verse or lesson I recently have "taught" Brage.
The children and I have replanted our garden. Brage has his own strawberry plant to care for and harvest. Sarai will be planting some veggies. I am striving to keep our "at home" times as normal as possible. My heart is heavy lately and I am fighting that "feeling". I am still praying for an eternal perspective yet cannot help but feel "swept away" at times. Then other moments I am as functional as always. I look at Omar and recognize the same "stirrings" in him. Please continue to pray for a "complete" healing for Brage.
Thank you,
Tam

Thursday, January 13, 2000 at 11:39 AM (CST)

It has been a very difficult week. We are just coming up now for air. I want to thank everyone for their encouragement and support. As many of you know on New Years Day I received my final letter of rejection to our appeal to keep our treehouse. I spent that next week in the hospital with Brage contemplating how I would take it down. How would I tell him? When you sit by your child's bedside at the hospital hour after hour, night after night, you do a lot of thinking. Children ask some hard questions. "Mommy, why can't I go to school like everyone else?" "mommy, when will I be all better again?" "mommy why is my hair falling out?" "mommy why can't i play with my friends?" When children look to you to explain how the world works...It's a big responsibility. How you answer determines whether they will learn to accept their disappointments or become bitter about them. I continuously have to check the condition of my heart before I share with him anwers to his questions. After many sleepless nights I still had no proper answer for the question I knew he would soon be asking..."mommy why do you have to take away my treehouse". I called a good friend who is a neighbor and filled her in on the latest; and asked for advice on how to deal with the situation. She simply said, "Will you let me handle this?" Another neighbor had asked the same. I told this friend "yes." She called the newspaper. Within a day of our return home from the hospital and the St. Pete Times article about our treehouse our neighborhood became a pandemonium of tv crews and reporters. The result: The pressure from the media persuaded the association. We were granted an exception and permitted to keep the treehouse as long as it is medically necessary. I am looking back over these past days. I am beyond exhaustion, mentally spent, and my heart feels ransacked. Yet.....I am so ever grateful. Grateful seems inadequate to express my feelings. Touched by the generous spirit of so many strangers who came to our defense. I don't think any of us will ever look at this world the same way again.
Tam
Psalms 55: Hear my prayer, O God;Listen to me and answer me; I am worn out by my worries. Psalm 5: In the morning O Lord, I lay my requests before you and wait in expectation. Psalm 7: O Lord my God, I take refuge in you;save and deliver me from all who pursue me. Psalm66Come and see what God has done, how awesome his works in man's behalf!Psalm81: Sing for joy to God our defender;Begin the music, stike the tambourine, play the harp and lyre.Psalm105:Give thanks to the Lord, make known among the nations what he has done.

Saturday, January 08, 2000 at 08:28 PM (CST)

Day 8. We are home. I packed up our room early this morning as Brage slept. The nurse de accessed his port, then re accessed it. We said goodbye once again to all our nurses and made our escape. I packed up my car and settled Brage in with blankets and pillows in the back seat. Then I turned the ignition and it would not start. I could hear my mind screaming No NO no nO NOOOOO. After several tries it finally worked and oh the relief as I sped away as fast as I could. Our home health care nurse was due at 12 and we had a reporter and photographer coming over to our house to do a story on Brage and his treehouse. We made it just in time. Brage took Miss Amy (our reporter)to the treehouse and gave her the grand tour. For those of you who don't know, Brage and his daddy, and his uncle Todd together built the treehouse for his 6th birthday. Brage and dad worked on the treehouse together for days until it was completed and Uncle Todd came and put a roof on it. It is magnificent. After the reporters left the home health care nurse taught me how to do the IV antibiotics. I realized today how tired I am of being the nurse when all I want to do is be the mom. I want to be the comforting arms that hold him and not the one who inflict pain, or the person to hold him down for procedures. The whole IV thing is complicated and I am not very confident. The insurance company pays for only 2 teaching visits. On my second one today the nurse had me write down all the steps and procedures. It was two pages long. I have to give the antibiotics IV every 6 hours. I told the nurse that I feel like a zombie (sleep deprived) and that I wasn't sure I could do it. She said my only other choice is to go back to the hospital. I guess I'll manage. My days are so mixed up I don't even know when our next chemo admit is. I suspect soon. We are due in Monday to clinic at 8:45 so I will find our for certain then.
We are thrilled to be home. Most of all because we don't have to be subjected to the foul language in the movie version of South Park which our room mate was so fond of. My windows are open, a breeze gently blows, and we are home.

Thursday, January 06, 2000 at 07:28 AM (CST)

Day 6....The walls are definately closing in. Each morning our space in this room seems smaller. Brage is asleep as I write. He is giggling in his sleep. Must be dreaming something funny. I love catching that. It's like a window into his dream world. Yesterday was quite a day. Andrea was our nurse. Any day with Andrea cannot be all bad. She is not only a good nurse but she is sweet and kind as well. He is still profoundly neutropenic which means he hasn't any white cells building yet. He needed yet another blood transfusion and today they have just told me he needs more platelets. A normal hemoglobin count would be 11.5 -14.5. Brage dips into the 6's and sometimes lower. Platelets should be about 150,000-450,000. His hover below 20,000. Today they are at 8,000. White blood cell counts should be 4.-12. Brage is perpetually under 1. His wbc count is why I give him the neupogen(gcsf) injections. But they do not work if there aren't any wbc's to start with. You need a reasonable amount to generate more with neupogen. All of this is somewhat normal for children undergoing chemotherapy. Brage's marrow just doesn't revive as quickly as some. We are expecting to be on the upswing soon though as we are scheduled for his next treatment in a week. If his counts don't come up you are "stalled" a week. You pump him up to knock em down again...one vicious cycle. We had lots of visitors yesterday. Uncle Stephen came by, then Aunt Colleen, then Pop Pop, Aunt Kimmy and Aunt Montana. The day passed so quickly. Last night, though, was difficult for him. He was very homesick and he misses his puppy. He was crying when the night nurse Jean came in. When she asked him why he was crying he said, "I just wannnnna go hohohhohome" He couldn't even get it out. Jean has been here a long time. At least since our first battle in 95. I'm sure she's seen it all. Yet this still touched her. I was surprised. Nurses sour quickly around here, their shelf life isn't long. Sometimes they move on and sometimes they get cranky and cold. It's a tough place to be for everyone. So I was really moved by her compassion last night. She was twice as gentle with him. It doesn't always happen like that so when it does it REALLY makes a difference. Over all the general demeaner of all the nurses here is much better than it had been. You start to think of them as your friends when you live here. Each morning we wake up and think, "so who do we get today??" Denise is fast becoming one of our favorites. Brage calls her "Mrs. Goygle Goygle" He got it from a cartoon. Somehow it suits her.

Tuesday, January 04, 2000 at 09:20 PM (CST)

Today is day 4. Brage's blood culture came back positive. He is here at least for the week and more likely two weeks if I cannot arrange home health care. His fever finally broke last night. He is feeling considerably better.We are both tired and a bit edgey. Omar came by this evening with Sarai to visit. They brought us a four legged visitor smuggled in under Sarai's over coat. We felt like criminals but it was very worth it. Tink just curled up next to him on the bed and fell asleep. And the look on Brage's face stopped my heart. How he cried though when it was time for them to go. He is very homesick and keeps asking how many more days. Since Brage's fever broke we are allowed out of our room now. (there's a 24 hour post fever rule here) We went on an adventure and snuck downstairs to the vending machines plunked in the quarters and feasted. Later we made our way to the playroom and Brage took me on for a couple rounds of Mario Cart on the Nintendo. We managed to finish our school lessons and that was an accomplishment with all the distractions. The floor is packed full again. I have met some new moms. The conversations always start the same. "what's your child's diagnosis?" and "How long are you in for?" then we swap protocol information, new studies and clinic trials, etc. I have learned some new information about prognosis staging and have questions I would like to ask our doc's tommorow. I still do not have a firm conviction that this protocol is the right path for Brage.
Until tommorow,
Tam

Sunday, January 02, 2000 at 08:10 AM (CST)

HAPPY NEW YEAR!!!! We are back at AllChildrens again. On New Years day Brage spiked a temp, laid around on the couch and complained of pain in his jaw, hand, and head. We called the doc though we knew what he would say. (Bring him right to the hospital)The ride to St. Pete makes me a bundle of nerves. When I got to the Howard Franklin Bridge Brage started screaming out in pain and then falling asleep (passing out?) The bridge is so long and I feel so helpless. I can't pull over to check on him and it just seems to stretch out forever in front of me. When we finally reach the exit I am driving like crazy and then I cannot find a place to park. So I finally choose a no parking zone and take my chances. I had to carry his feverish little body up to the second floor. They ran a cbc and a only a day past his last blood transfusion his hemoglobin was back down in the low 6's. They gave him another transfusion in the middle of the night and we'll see how quickly his body chews through this one. There was a resident on last night and he seemed perplexed that all the pain was on the right side of his body. He ran a number of different tests which we won't have results for right away. I tend to think it's an infection with his white count being so low and his anc at zero. They have him on IV antibiotics just in case and we will wait to see if something grows down in the lab. He put up a big fight with what energy he had left last night about a blood draw from his arm. He kept crying and saying NO way, I don't like that, use my port. They explained they needed to test both the blood from his arm AND the port but he absolutely refused. Then between sobs he said, "I'm too nervous" and I finally put my foot down. His little face was all swollen from crying and pale and his chest was just shaking. I told them we weren't drawing from his arm. Sometimes you just gotta do that. If something grows in the blood they drew from the port they can come back and renegotiate, but for the moment I am not letting anyone in a white lab coat near him. (I am one of those people who actually READ the patient rights flyers they hand out around here)
I am sitting here thinking about what a wonderful New Years Eve we had. We spent it with The Scott's who joined us for a slumber party. Katie Scott was diagnosed 6 months after Brage's first dx. They went through their first protocol together. Katie is doing wonderfully and you would never know cancer has touched her life by looking at her. Jeannie and Neil (Katie's parents) have been wonderful friends. They have a 4 year old son Nick who Brage just adores. Over they came with their jammies. We had a nice dinner together, then we listened to music, took the kids for a walk, carolled at Miss Tish's house, watched fire works-set some off of our own, and then got the kids all snuggled up in their beds....and they actually went to sleep. Then for the first time in our 6 year friendship we were together as adults without children bustling about. We watched a grown up movie, had fondue and really enjoyed ourselves. It was a really neat time. I sat down the next day and wrote down my resolutions and am very excited about all this New Year has for us. Thank you to everyone for supporting us in prayer and with gifts of your time this past year. We are very aware that we have been lifted up in love in 1999.
Love,
Omar, Tam, Brage, and Sarai.
Psalm 118:5 In my anguish I cried out to the Lord, and he answered by setting me free. The Lord is with me; I will NOT be afraid.

Thursday, December 30, 1999 at 09:44 PM (CST)

GO LOOK AT TINKERBELL IN THE PHOTO ALBUM!!! It is 10:44 pm our time and we have just gotten home after a 14 hour hosp. stay. (My sisters Kimmy and Montana drove up and helped us pass the time. Kimmy commented that hospital clocks appear to move much slower than regular ones. I agree.) We went to our clinic on Monday morning and his counts were fine...not normal but standard for day 7 post chemo and we were able to come home. Then today, not 4 days later, his counts bottomed out. He needed 7 units of platelets and a red blood transfusion as well. This is pretty par for the course for us, but since the doc's are still on vacation we were sent back to All Children's. (the entire process took 14 hours) I give Brage his gcsf injections daily to boost his white cells but even with them his ANC is 0. (ANC = Absolute neutrophil count) There isn't any transfusion they can give for this. You just have to wait and wait for them to come up. So... we cannot be around people right now and are being careful about all types of germs and such. Brage had a head injury Christmas eve which has now scabbed over well, but with no "infection fighting" white cells we are keeping a close eye on that and he has a huge hematoma on his left side above his hip from a fender bender with our sofa(without platelets he bruises very easily). The problem with not having any white cells besides the obvious (not fighting off infection) is that often when something IS infected you won't know because there aren't any white cells to cause inflammation and other symptoms. So you have to really be on top of it. This is what happened when he had appendicitis. His white count was dangerously low then but he was difficult to diagnose because there wasn't any swelling and his temp was only low grade. All we had to go on was his constant pain. Even after a sonogram they were unable to tell us what was wrong until it was almost too late. So I inspect his body and all possible infections sites regularly. We are due back in on clinic on Monday and I am hoping the transfusions hold us over until then as I am planning a nice quiet beginning for our new year. Every moment at home for us is precious. I find that as a family we just ache to be together. When we are safe and snuggled up at home it is as if the whole world outside does not even exist.

Saturday, December 25, 1999 at 10:44 PM (CST)

MERRY CHRISTMAS EVERYONE!!!!
For everyone who was praying that we would make it home... you will be pleased to know we DID!!! God hears!
We spent a lovely Christmas eve waiting for Santa. Brage and Sarai were wound up and jumping around like one of those yip yappin little yorkshire terriers. (hint hint) Thanks to all the wonderful people that work with my mom for the outrageously beautiful Christmas card. (card?? or billboard?) Standing center stage in our living room and second only to our tree, it welcomed us home in holiday style.
After a wonderful dinner, roaring fire, hot apple cider, and Christmas stories, Santa whipped in and out on his turbo sleigh and left delightful presents for everyone. Sarai has been dancing around for a full day singing, "I have a kitchen of mine own!" and serving us a cuisine quite her own as well. The puppet shows the children have put on (with their new puppets and theatre) have entertained us all day. [I just wonder why the dragon always ends up eating the princess.] Omar loved his Argentina team soccer shirt with Maradona's signature. He talked all night in his sleep about it. My favorite gift was the framed photo (an understatement, you'll understand when you see it) of Sarai and myself. A precious moment of our lives captured and suspended forever.
Today has been an emotional time for us.
Thank you to everyone who has shared it with us, either by stopping by, thinking of us,calling or praying for us today. We are grateful for the love that has been showered on our family. I am sitting here thinking that this season is simply about the greatest LOVE that ever was. Love that stretches out from God to man. Love that speaks through time, circumstances, and even to the hardest of hearts. Once 2000 years ago that love was swaddled in a young womans arms, committed to fulfill His mission...a mission of love. Greater love hath no man than this; that he lay down his life for his friends. My Christmas wish for all of you this evening is that you know that Love in a new way this year.
Goodnight,
Tam

Thursday, December 23, 1999 at 08:40 AM (CST)

We are waiting for the doctor's to make rounds this morning to find out if we will make it home today. Brage is currently in the middle of a Nintendo marathon. We had a pretty calm day and night. (it's all relative of course) They moved Michael down to ICU and our room-mate is still unhappy about his incarceration. I discovered he is 7. I managed to find him a nintendo machine that I pushed to the cage and then slipped the controls through the bars. What more can I say. There is so much you wish you can do, but you can't. Everyone who walks in says the same thing, "this is so sad" but then they leave knowing there is not much else to be done. I already push it when I demand they bathe him or call the nurse in when it seems he needs them. The floor is slowly clearing out as everyone is getting their discharge orders. I am looking around saying to myself....hopefully this is our last visit here. I am saying good bye in my own way. Collecting e mail addresses and phone numbers. It is a strange mix of us here...thrown together from all walks of life...yet bound together like family. How happy we are for each one that gets to leave this week...."yeah, good for you!! we say. Now get outta here before they change their mind!"
Well to everyone that is on this adventure with us, reading our entries, and praying for our family and Brage's healing......thank you for standing with us. We could not do it without you. Thank you for caring.
Love,
Omar,Tam, Brage, and "Rye Rye"

Tuesday, December 21, 1999 at 08:28 PM (CST)

We've just started Brage's second round of chemo. He is handling it very well, though he hates having his eyedrops which he needs to counter the irritation and infection from the ara-c. He makes the nurses bargain a bit with him before he lets them put it in. Brage is becoming a great negotiator. He is not eating (but that's expected) and is not up to much more than activities he can do in bed.
Marc-Mario (our room mate)left and in moved Micah. He is a precious three year old who came with a horrible hacking cough. I sat here for 20 min. considering how I would handle this. I finally said something to the nurse who said, "I'm sorry but we just don't have any other beds for him". So I stalked the halls looking for the nurse supervisor and told her there wasn't anyway this child was staying in our room. I insisted that the doctors did not want my son exposed to anyone exhibiting symptoms of illness. She was annoyed with me and I hate that. I struggle with doing what is best for my son and then making things difficult for already tapped out staff here. It is a shame. The last thing I need is for Brage to catch something and for us to be stuck here through the holiday. All it takes is a 101.5 temp and we've bought an extra 72 hours. Brage has been in the same room for an hour with this child. So.....with a lot of hoopla out went Micah and in came Devonte'. Devonte' is the size of Brage so I am guessing he is around the same age. He is locked up in a crib (baby cage)most of the day. All day long he cries out in this deep heartbreaking voice. agghhhhhhhhhhhAAAAHHHHHHHHGGGGGGGhhhhhhhh over and over. Brage has turned up the volume on his nintendo, but I cannot tune Devonte' out. It is almost 10pm and he is finally settling down. I will never in a million years get over the tragedy of children who endure endless hospital stays on their own. I know how blessed we are that I am able to be here with my son. Just one more thing I have to be grateful for.
One of the bone marrow transplanted boys relapsed today. When they wheeled him to his room it was like time stood still. Everone came to the doors of the hall to watch him pass. I couldn't bare to look at his mother as she walked by. I just stood there staring at the ground. All of us with the same thoughts. Even the doctors seemed devastated. Please pray for him and his family. His name is Michael. The overall atmosphere on this floor is discouraging. There have been 15 newly diagnosed children since October. This horrible disease is such a thief.
Til tommorow,
Tam
Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirit.

Monday, December 20, 1999 at 03:21 PM (CST)

Hello Everyone, thank you for your continued prayer and support. I was hoping to be adding this entry from our NEW hospital. However, our doc's could not admit Brage to St. Joseph's because they are understaffed this week, so we are back here at All Children's Hosp. The floor is jammed as everyone is trying to get in and back out before Christmas. I am praying that we will be grateful and content in all our circumstances. I am certain that we are here for a reason. God has a plan. Perhaps there is a family here who will need us, need comforting, who knows? I am trying to keep my eyes on God's will rather than my personal preferences. I know for certain that we are right where we are supposed to be. Please pray that our hearts will be willing.
Brage's counts are high enough for his chemo. They are doing his eco and ekg just to make sure he can get the Idarubicin and that there hasn't been any damage from his last round. Please be praying that his heart will be protected.
Brage is having a great time playing Nintendo with our room-mate Marc-Mario. We have roomed with him before and he is a sweet boy. His family is from Jamaica and one night we stayed up all night watching Marc-Mario's favorite movie COOL RUNNINGS and eating popcorn. Sarai has kicked off her shoes and is cuddled up with Brage in the bed. She is his mascot.
I will post updates each day that we are here.
Love,
Omar, Tammy, Brage, and Sarai

Monday, December 13, 1999 at 03:01 PM (CST)

We were up bright and early, packed and ready to go. We arrived at the clinic, accessed Brage's port for counts and the machine could not read them. This always makes me nervous.
Dr. Rossbach make a smear (slide) and counted manually. It seemed to take forever. The results were that his counts were too low for chemo, thus we are on hold until next week. We had suspected something was up, he's bruised all over, pale, and has red rings around his eyes. It hurts my heart to see him like this, but I know it's all part of making him better. We are scheduled for another try on Monday the 20th, which is too close to Christmas for my liking but...what can you do? Christmas week in the hospital is becoming a family tradition. I am reminded of 1995. Sarai was a month old. Brage, Quintin, and Matthew were all in for a month due to port infections. We took over the floor and played soccer up and down the halls with the kids. Kids make joy without regard to boundaries. It doesn't matter where. Christmas happens. It was quite a picture that year. Same little round bald heads with eyes filled with fun. They made the nurses days a challenge.
We have a very special surprise planned for the children's Christmas present this year. I am not telling until it's over because "someone" related to me will give me a very hard time when she/he hears...and I'm going to do it anyway....as usual I cannot be pursuaded........so why make anyone flip out ahead of time??? hehehehe...this is SO MUCH fun....so for those of you who know the secret...........SHHHHHHHHHHHHHHHHHH!!!
I'll post photo's when it's over.

Wednesday, December 08, 1999 at 05:16 PM (CST)

I awoke this morning at 2:45am. My mind was exhausted with thoughts of our admit on Monday. I don't know why it hadn't occurred to me before but all of a sudden I knew I had to see the new place. When Brage woke up later I told him what we would do. He said, "but mom, I won't know anybody there and they won't know me." With that I understood that this was just as difficult for him. So...first thing this morning I called over to the floor and asked if it would be ok for us to come walk around. Not only did they invite us but told us to call just before we arrived and they would set us up with the child life specialist who would give us a private tour.
When we got to the front of the building Brage said, "MOM it looks like MOSI from the outside" (MOSI is a childrens museum and hands on science center) It was a good start. Once inside everything was decorated for Christmas. A huge Christmas tree was in the entrance way. The CLS met us at the lobby. We walked through the hall to what they call the first POD. A nurses station surrounded by rooms. The station is literally a whisper away. No more running down the halls searching frantically for our nurse. The POD looks like the inside of a space ship. The patient rooms are HUGE, PRIVATE, and they EACH have a tv/vcr!!!! some even have a computer. There is a private shower/bathroom. The rooms have desks and a small pull out "sleeping pad" for parents. I felt like crying. It's the Sheraton Grande!!!! I could not help but feel sad for all the parents that must continue their children's treatment at the 'other' place. Please be praying for them. What goes on over "there" is mind boggling. The atmosphere here was like a salve to my frattered nerves in comparison.
I cannot help but feel RESCUED!!!
Tam
Isaiah 54:10 For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you...says the Lord, who has compassion on you.

Monday, December 06, 1999 at 09:57 PM (CST)

We were blessed with a quick clinic visit this morning. In an out in under an hour and half. This phase of treatment is very confusing.....9 pills (chemo) every four hours (with no eating before and after), plus his nightly chemo 1 and 1/2 of those, his regular meds (2 different pills which alternate doses odd and even days) and then his "rescue" meds every twelve hours.....aghhhhhhhhh........I am almost looking forward to the admit; where the medical people are responsible for what drugs he gets and when! But really I am enjoying being home.......it's been a nice long vacation.
More good news: They have us scheduled for our admit Dec. 13th at St. Joseph's Children's Hosp. (As long as the insurance issues are worked out) Which means PRIVACY or to hear it Brage's way..."does that mean mommy, I get to have the sound up on my movies as loud as I want???" (YES BRAGE...within reason.) Some of the room mates we've bunked with have been night owls, which means they sleep all day. We've tried to be considerate by keeping all of our sound very low. This of course has been frustrating for Brage, who actually wants to HEAR the movie. Part of me will really miss All Childrens. Having the doc's accessable round the clock was very reassuring. However, sharing rooms with people whose lifestyles can be very different is stressful. Babies cry all night. Teenagers watch adult tv and have all night video marathons, or even friends sleep over. If I have to watch one more talk show I'll be ready to appear on one myself. Add to that middle of the night emergencies that happen sometimes in your room and the atmosphere can be traumatic.
So I am looking forward to all the comforts having a private room allows but am also a little melancholy about leaving ACH. Some of the nurses there have become close friends and we will miss them. Natasha our vital's tech taught us how to play Mario Bro's. (We love you Natasha) Pat (the snack cart lady) always brought me bottled water and a warm hug. Dorothy, Denise, Andrea, and Jennifer.....have been the best nurses anyone could ask for. We will never ever forget their kindness and soft hearts in that hard cold space. A gentle spirited nurse is so precious. {sigh} Who would have thought this part would be so hard? Tell me why I am going to the new place again?

Friday, December 03, 1999 at 07:43 AM (CST)

I put the children's Christmas photo on this site's photo album.
Our Christmas tree is up, lights and ornaments. A perpetual fire burns in our fireplace. I find myself trying to make every moment festive. Can you say HOT CHOCOLATE every night of the week???
Brage, Sarai and I attended the Children's Cancer Center Christmas Party. I ran into some people we did our first Protocol with from 95-97. Their families and lives seemed back to normal. Like cancer had never touched them. I was happy to see them but it was bittersweet. I couldn't get the lump out of my throat all evening. Some of the children I didn't even recognize at first...they looked so well and had full heads of hair. The looks I saw registering in the parents eyes when they first saw us were all the same.....pity, compassion, and under it all FEAR. I know what they were thinking. I've thought the same as I've run into one of our little buddies who'd relapsed. (If it could happen to them then it could happen to us.)
On one level I was sorry I went. however, I did get some excellent information about another hospital we may be able to use for our admits. Get this......PRIVATE ROOMS!! I am thrilled at the idea. However, though it would be more comfortable I cannot help but feel a little nervous. We know all the nurses at ACH, we know the "insider information", every knows us, and we are very attached to our dietary lady. (Pat - she's the sweetest little Christian lady) I just don't know...
.............
Brage and I are having an interesting time home schooling. He is easy to teach and I am learning a lot as well. It helps me keep focused, my mind busy, and the days pass. There are days he's just not up for it and we don't push it. Other days he is a sponge.
We have really enjoyed reading all the posts in the guest book. It's so comforting to know that there are so many people who care and are diligently sending up prayers for Brage's healing.
Psalm 50:15
And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me.
Omar and Tam

Tuesday, November 30, 1999 at 09:16 PM (CST)

Today Brage started his next round of chemotherapy. (spinal and chemo that we give him at home.) Our next admission is Dec. 16th. He is so strong and brave. No matter what he's going through he is so eager to please. I am noticing just how compliant about things he's become. Yet, his spirit is always full of joy, ready to move past the difficult moments to another one. He never lingers in his pain as we adults tend to do. He expects the best from the next moment no matter what the last one was like.
We are still concerned about whether this protocol is long enough. We are praying that God will give his doctors wisdom and lead us down the right paths. These decisions we are making seem so big. However, we both (Omar and I) recognize that ultimately our little one is in God's hands. We are praying for COMPLETE HEALING for Brage and protection from side effects (NO MORE CANCER) and that we will keep our eyes on things unseen. We are praying for an eternal perspective. Please coninue to pray for us. Storm heavens throne.
Omar and Tam
STANDING ON GOD'S PROMISES

Tuesday, November 30, 1999 at 09:11 PM (CST)

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