::Consolidation::
From September 15, 2003 to November 2, 2003

He had radiation during this phase. He also was admitted once for a bacterial infection in his blood, which thankfully was resolved with aggressive antibiotics.


This is a list of the medications and chemotherapeutic drugs given during the Consolidation phase.

Radiation Therapy- He only needs this because the doctors want to be sure to kill all the Leukemia cells in his testicles. Radiation therapy delivers high-energy rays that stop cancer cells from growing and reproducing; the type of ray is different from a regular x-ray. Matthew needs to have 12 doses of radiation. They are consecutive doses, meaning it is given daily. His radiation therapy will start September 22 and go through October 7, Mon-Fri.

Cytarabine (Ara-C) 300 mg/m2 dose- Cancer fighting medicine; mixed with the Etoposide listed below; given into his Port by IV drip over 2 hours after 30-minute saline bolus; saline bolus given again for 30 minutes when chemo is finished; actual dose is 273 mg-they calculate the dose as 300 mg per meter squared and Matthew is .91 meters squared; this is a much higher dose than the Ara-C later on; could get fevers from Ara-C; given days 1, 4, 8, & 11.

Etoposide (also called VP-16) 150 mg/m2 dose- Cancer fighting medicine; mixed with the Ara-C listed above; given into his Port by IV drip over 2 hours after 30-minute saline bolus; saline bolus given again for 30 minutes when chemo is finished; actual dose is 137 mg-they calculate the dose as 150 mg per meter squared and Matthew is .91 meters squared; nurses watch for low blood pressure while going in; given days 1, 4, 8, & 11.

Intrathecal Therapy with Methotrexate- Cancer fighting medicine; given into his intrathecal space in the lumbar spine; also called a lumbar puncture, spinal, or back poke; the cancer fighting medicine works to keep cancer cells out of the spinal fluid; he is sedated with Versed and ketamine (rapid-acting general anesthetics) for the procedure; given days 1, 29, & 36.

Daunorubicin- Cancer fighting medicine; is a red liquid; given into his Port by IV drip over 15 minutes; given days 15 & 22.

Vincristine- Cancer fighting medicine; given into his Port by IV push; given days 15 & 22.

L-Asparaginase- Cancer fighting medicine; given into a muscle (IM); so it is a shot (we call it L-Spar shot); allergic reactions are a concern and the kids are monitored carefully; given days 15, 18, 22, & 25. (He had PEG Asparaginase during Induction. There is a difference.)

Dexamethasone (Decadron)- Steroid pill taken at home daily; makes him MOODY and HUNGRY; often referred to as the "meany and munchy pill" by Kirk and I; he always takes this every time he has Vincristine and Daunorubicin; start taking on day 15 and end day 28.

Cytoxan- 1000 mg/m2 dose; Cancer fighting medicine; given by IV drip over 1 hour; preceded by saline bolus and followed by saline bolus for 2 hours; can cause bladder irritation-that is why so much saline is needed; THIS CHEMO IS COUNT DEPENDENT! Before getting Cytoxan ANC must be greater than 750 & Platelets greater than 75,000; will be delayed if counts aren't high enough; given day 29.

Cytarabine (Ara-C) 75 mg/M2- Same as the first one listed; this one is given by IV push though (just a syringe with the drug in it and push it in over about 2 minutes); can leave his Port accessed for several days and give at home; could get fevers from Ara-C; given days 29, 30, 31 & 31; then again days 36, 37, 38, & 39.

6-Thioguanine (6-TG)- Cancer fighting pill; take in the evening at home; will start on day 29 and go through day 42.

Septra- An antibiotic that helps prevent a specific type of pneumonia called Pneumocystis carinii, which affects immunocompromised people; is a pill taken at home every Monday and Tuesday.

Zantac- Medicine to help with ulcers and stomach pain caused by the steroids.

Anzemet- Medicine to help with nausea; given by IV in his Port before he gets any chemo by IV.

Consolidation Calendar- Located at the bottom of this page.

::Consolidation Updates Below::
November 2, 2003, Sunday
Today was the last day of consolidation. He got Ara-C in his Port, given here at home by mom. It isn't a big deal at all to do this. Now we just wait for his counts to come up so he can start the next phase. I know Dr. Barnette will call this week and let us know exactly what is to happen next. He'll get a CBC Wednesday to check counts.

~Katrina

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October 31, 2003, Friday ~Happy Halloween~
Well it is a "white Halloween" here in Vernal today. We had snow overnight and the kids were up at 6:30 a.m. hollering about it. Why is it that when it snows, they just KNOW it and are up so early? I think they have an inner sense that tells them that it snowed during the night. It is cute and I don't mind one bit being woke up with an excited, "IT SNOWED MOM!"

Lane is going to be a Ninja and Matthew is going to be a glow-in-the-dark skeleton. Matthew's costume is a hand-me-down, but he's excited anyway. Matthew is feeling good to go trick-or-treating for a little while.

Yesterday's Chemo:
First of all I was WRONG about him getting Cytoxan again. *Sigh of relief!* I'm glad I was wrong about that. I looked at what I wrote above about the day it is given and it says Day 29 and nothing else. I don't have any idea why I thought he'd get it again. Oh well. We're all human and it is the doctor's job to make sure and double-check what Matthew should get and shouldn't get.

So Matthew's only chemo today was a spinal (yes, he had that again) and Ara-C (that again too.) He's getting the Ara-C at home again for 3 days just like last weekend.

Last week's Cytoxan knocked his counts down already. He also had platelet and blood transfusions yesterday.
Counts:
WBC- .5
HCT- 21.5
PLTS- 25
ANC- 300
Segs- 67
Bands- 0

I had a feeling he'd get a blood transfusion today. His face has been looking really pale to me. He's had pretty good energy though; however, I think his body gets used to low counts and he can still function fine with low blood counts. For example, he wasn't taking naps or going to bed early, and he still had energy to play "karate chop/sword fight" with his brother.

What is next to come?
Good question. We don't really know now. Dr. Barnette was out of town and so the other doctors really didn't know what to tell us FOR SURE. Two doctors, one fellow and one attending, both said that Matthew needs high-dose methotrexate (HDM) treatment now. This would require being admitted to the hospital for this. I remember Dr. Barnette saying that Matthew "might get HDM," but he never said anything about being admitted. This was back in August, so I may not remember it clearly. The doctors said they wouldn’t go ahead with anything else until they talk to Dr. Barnette and discuss it with him.

This is supposed to start next week IF his counts are a certain level, which I highly doubt and the doctors highly doubt that they would be at that level anyway. Therefore, we don't really need to worry about it for a couple of weeks. Matthew will have a CBC done next Wednesday just to check the counts and see where he's at--he may need another transfusion anyway--so it is good to check counts often after a lot of chemo like he's had.

And next Saturday is Matthew's 6th birthday, so we definitely don't want any inpatient chemo then! I'm hoping he doesn't have to have it, but if they say he NEEDS it to be sure and kill every cancer cell, then that is what we will do.

Thank you for checking in on Matthew.
~Katrina

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October 28, 2003, Tuesday
Yesterday I could not update because the Internet wasn't working here.

We had a great weekend and yesterday Matthew went to school again. I'll start with Saturday and the Candlelighter's Halloween party. It was fun for the kids and they were surprised and happy that they were getting to go to a party. They really enjoyed the face painting and the ventriloquist. Lane dressed as a Ninja and Matthew as a glow-in-the-dark skeleton. This is what they will be on Halloween too. Lane was so EXCITED that I had bought some red hair color to spray on his hair. He's always wanted to do that, so he thought that was pretty cool. They also decorated sugar cookies and did some Halloween crafts.

For school yesterday, as well as last Friday, I went the whole time with him. (It is only a 1/2-day for kindergartners.) It was good to go and get a feel for the kids in his class, and also to keep an eye on Matthew while helping the teacher. None of the kids are the least bit sick; not even a sniffle, so I know their parents are working hard to help keep Matthew healthy. I'm grateful for that. They were all really cute with Matthew. They all welcomed him and told him how happy they were that he was back. He doesn't have the energy to run and play like before though. At recess, one friend (the same one from church), wanted Matthew to swing and he said, "You can do it Matthew, you are a good swinger." So Matthew went over with him to the swings, but could not pull himself into the swing. I went to help him and then he was able to swing. I told his friend that maybe when I'm not there, he could help Matthew and he said that he would. I explained that Matthew is weaker now and needs help with some things, but with help, he'll get strong again.

Today Matthew went on his own to school. Yes, I wanted to go WITH him AGAIN! However, I cannot do that. I have to let him go on his own and he needs to go on his own too. He had a good day today. He said that he played on the slides at recess today. He came home with a ton of work from class. (Pages that they've done in class, but his teacher didn't send them to me yet.) There were about 15 pages I guess and he sat down and wanted to do it all! So I read the instructions and he zipped through them. He loved it and wanted to do more!

Next Chemo:
Thursday is the last day of chemo for the Consolidation Phase. Yeah! He'll have a spinal, Cytoxan, and Ara-C. This is the same as last week. (Oh...the Ara-C over the weekend went really well. I got a good blood return every time before giving him the Ara-C. *Shew!*) I will find out more details about what happens for the next phase on Thursday from Dr. Barnette. I am sure he goes on his Three Year Maintenance Phase next, but what chemotherapy he will get and how often, I won't know until Thursday.

Thank you so much for checking in on Matthew, for keeping him and our family in your thoughts and prayers, and for the guestbook messages. Hall family, you are so right in what you said about us being where we are in our lives right now. I believe what you said is true, and knowing this brings peace for us to endure it with faith.

~Katrina

Update on Melanie:
She is doing MUCH better!!! She was released from the hospital 2 weeks ago. (She was inpatient a total of 5 weeks, including a week in ICU.) She was still on TPN (total parenteral nutrition) because of extreme nausea, and her mom had to learn how to give this to her at home. She also had several at-home medicines to give her that the home health nurses taught her mom how to do. She is still having dizziness and will have an MRI this week. She also is still having a hard time keeping her platelet count high and goes out to PCMC for transfusions weekly. Thankfully she doesn't have to have daily or twice daily transfusions like she did while inpatient. Melanie and her mom are an inspiration to us. They have truly kept smiles on their faces even though it has been so extremely difficult for them. Seeing what they are going through first-hand is hard for me at times, but at the same time, it is good for me because when I look at us, and what we have been through, it is nothing.... and leaves me with nothing....nothing, at all to complain about. I try my BEST to keep a smile on my face now too, and when others ask how we are doing, I respond with a cheerful "doing fine" instead of a woeful "doing fine." There is a difference and it has helped with our attitude. Rebecca and Melanie have taught me and they are wonderful.

After Matthew was released from the hospital and we were on our way home, he said that he wanted to get Melanie a Beanie Baby. (He had received so many from his radiation therapists and they made him happy, so he wanted to get one for her.) He asked me what her favorite animal was and I told him that I would find out. So the next time I talked to Rebecca I asked her and I found out Melanie likes panda bears. As soon as Matthew's counts came up, we went Beanie Baby shopping and found a panda bear one at a local store. We wrapped it up and were going to mail it to her at the hospital, then we found out that she got to come home too! (This was Oct. 15th). So on the 17th, I called her house and asked if it was ok to come and give Melanie her gift from Matthew in person. Of course it was ok and so Matthew and I went up to visit. Melanie was really happy to get this from Matthew. She thought it was very sweet of Matthew. I asked Melanie if it was ok to take a picture of she and Matthew together and she readily agreed. Rebecca got out her camera too. Melanie didn't reach for a hat or anything...she just sat up by Matthew and put her arm around him and smiled a really beautiful smile. She's an amazing young lady. I am honored to know her.

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October 23, 2003, Thursday
Yesterday Matthew had chemo. He had a spinal, Cytoxan (910 mg), and Ara-C.

Our appointment was at 8:00 a.m., so as we were driving up to Salt Lake from Provo, we got to see the sun coming up behind the big Wasatch Mountains. Then on the way home we got to see the sun setting behind us as we drove east to Vernal. We were the first ones in clinic this morning and the last ones to leave. It was a long day because Matthew's Port gave us trouble again! It did the same thing as yesterday. It gave an ok blood return when getting the waste blood out, but when getting the blood for the sample, only little bubbles of blood come out.

Well they decided to give him his "sleepy medicine" for the spinal and get that over with, but before giving the Cytoxan, it was very important that they have a good blood return. Matthew did great with the spinal. Nurse Heather even gave him less Ketamine this time. He goes to sleep nicely and wakes up nicely. He was then moved from the procedure room to a regular room and then Nurse Heather tried and tried to get blood return from his Port. It just was not working. It is so frustrating. We had him in every position except standing on his head. So he had to have TPA again. This time not even that would work. (I neglected to say yesterday that Tami decided to re-access Matthew before giving the TPA just to see if it was that. When it wasn't, she went ahead with the TPA.) Well today it must have been opposite...it must have been the way Tami accessed the Port, because even after an hour of TPA, it would not give a blood return at all. So then Heather re-accessed it and it worked PERFECT. Heather said that Tami could have put the needle in a little off center, towards the edge. (Dr. Bruggers said that if the Port does it again, they might do a dye-study on the Port to see if it is kinked or something.)

By this time, it was 12:30!! Since the Port had been flushing ok, Heather had started Matthew's prechemo hydration of saline. It had to go for one hour, so luckily that was finished. The Cytoxan takes 30 minutes, then he had to have two hours of posthydration. Hydration is important because Cytoxan can cause really bad bladder irritation. After the Cytoxan, he got Ara-C. This time it is only 68.3 mg instead of 273 mg, so it is an IV push (from a syringe).

He'll get the same thing next week as yesterday. Next week's appointment is on Thursday though. That is the day that Dr. Barnette is in and I want to be able to go over what is next on the roadmap with him. He's his primary oncologist and knows exactly what is going on with Matthew's protocol.

Matthew also has to have Ara-C by IV (from the syringe) here at home until Saturday. Our medical supply company sent it to us this morning. It is in the same type of elliptical balls that his antibiotics were in. All I do is hook up the tubing to Matthew's tubing from his Port and unclamp it. It runs in on its own over 15 minutes. This morning when I gave him the Ara-C, I was making sure I got a flash of blood return first, and when he was sitting up there was nothing. I had him lay down, thinking "oh no." The TV was on and he had to extend his head to look at it, because he wasn't facing it. Well all of a sudden, there was great blood return!! Hmmmm, I wrote that position down in my notebook. We've never tried that position before. I'll try that first thing tomorrow. All of the other positions he has had to be in aren't working anymore and it is getting frustrating. I hope that the extended head, lying down position works from now on.

He's doing really well today after a slow start this morning. He was pretty tired after yesterday. So was I! He didn't go to school today but he will tomorrow. He's so excited! Nurse Heather said that it would be fine to go next week too. She said it should take a week for counts to be affected by the chemo.

Tomorrow we are taking a load of wood out to Kirk's parents and staying overnight with them. Then on Saturday, on the way home, we are stopping in Park City to attend our first-ever Candlelighter's event! It is a Halloween Party. I haven't told the kids yet. I didn't want to get their hopes up and then have it not work out if something happened. We will just surprise them! They love parties and I know they'll have a blast.

Thank you for your continued prayers for Matthew and our family and thank you for checking in on Matthew.

~Katrina

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October 21, 2003, Tuesday
Matthew has been feeling really good lately. With his counts up over the weekend, we went to Wal-Mart and he got to pick a prize for all the Port accesses and shots he's had to have lately. He picked the game called Trouble. It is fun and we have all loved playing it. We even went to Sacrament Meeting on Sunday. Matthew and I came home after it was over because I had to give him more antibiotics, but Lane stayed for all of church and a friend brought him home. As soon as we walked in, one of Matthew's friends came straight over to him (this friend is in Matthew's class at school too) and he asked Matthew if he was feeling better and when he'd be able to come back to school. I told him hopefully on Thursday. He said, "I sure hope so Matthew because you are my best friend in the whole wide world!" That sure made Matthew happy.

Today he had a CBC and it shows that his counts are good enough to start chemo again tomorrow. He'll have a spinal, Cytoxan, and Ara-C tomorrow. He'll also start taking 6-TG pills at home every evening.

Counts:
WBC- 3.4
HCT- 33
PLTS- 130
ANC- 1300

When the home health nurse came this morning I thought it would be another simple blood draw from his Port, but it wasn't the case. I could flush saline just fine, but I could not get a blood return. After having Matthew lie on his side, on his back, turn his head, cough, etc., etc., it finally started working and some blood came out into the syringe. I got about 7 cc of waste blood and then when I tried to get the blood out for the CBC sample, it just quit all together and wouldn't give any blood at all. So I called Primary Children's and asked them what to do. He needed to have TPA put in his Port to dissolve any clots in there. I had to take him to his pediatrician, Dr. Pollary to have that done. He is always WONDERFUL with Matthew and so is nurse Kim. (And now nurse Gayla works there again..yeah!) Well Dr. Pollary ordered the TPA from the pharmacy and then we went up to the hospital part of the building to Tami's work area. (Tami is Matthew's chemo nurse here in Vernal.) She got the TPA and did it. It worked great after that! SHEW! Matthew was relieved and so was I because if it didn't work, then he would have had to had a CBC done from his arm.

So we are headed out to Provo now and will stay with Grandma and Grandpa Harris. Tomorrow's appointment is at 8 a.m..

~Katrina

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October 16, 2003, Thursday
Well his ANC today is up a LOT from Monday!!! Yippeee!
Counts:
WBC- 14.4
HCT- 34.4
PLTS- 116
ANC- 9000
Segs- 56
Bands- 9

The nurse from PCMC that I talked with said, when I asked her about Matthew's leg pain, that the pain most probably was from the white blood cells being overstimulated from the Neupogen in the bone marrow. Good news is that he doesn't need anymore Neupogen shots. YIPPPPEEE! Matthew was so happy! I had delayed giving him the shot today until I heard what his counts were. Dr. Lemons had said to give the Neupogen until the ANC was 2,000 or above. The nurse today also said that we should still be careful and not go to many crowded places even though his ANC is up.

The Dexamethasone side effects are finally subsiding. Matthew only wanted ONE piece of French toast this morning and NO bacon! He also did not ask (demand) more food 30 minutes later, or even an hour later. In fact, he's only eaten at mealtimes today. We survived another round of the meanies and munchies! Yeah!

If you didn't read yesterday's update about Matthew's song, be sure and read about it because it is really good! :-)

~Katrina

October 15, 2003, Wednesday

Songs of Love.org
~ New Link Added on 10/15/03 ~
On 10/14/03, Matthew received a gift of love from the organization, Songs of Love. The gift was a CD made especially for him based on information that I had sent them. It is an original song - completely written, composed, and performed - just for Matthew. Since he was just recently inpatient, still recovering from his illness at home, and dealing with daily shots of Neupogen, "his song" couldn't have come at a better time!! It lifted all of our spirits, but especially Matthew's!! We can't even count the number of times he has played it. He has learned how to work the CD player so he can play it whenever he wants to. He said, "When I get my shot next time, I'll just play my song and I won't even worry about the shot."

Please take a moment and visit the Songs of Love web site--they could also use help with donations so they can continue this service for other children like Matthew.

To listen to his song, send me an e-mail at matthewh_update@yahoo.com and I'll send it to you by e-mail. It is such a wonderful and precious song. ~Thanks, Katrina

Also today (10/15/03, Wed.), I added 2 new pictures in the scrapbook. Just click on the camera image to the left. I added a new link called "Care Givers" as well.

It has been working out for Kirk to come home on his lunch hour to give Matthew his Neupogen shot. Matthew likes it better that way, because he likes to squeeze my fingers. He is fully, 100% cooperating with them now. It is amazing what kids like him just deal with and get used to. His song from Songs of Love also helped a lot!! He has it all memorized and sings along with it-- we all do! :-) He's been having a lot of leg pain the last 2 days from the shots I believe. Actually I believe it is from the WBC in the bone marrow being stimulated to produce at a fast rate, thus causing his pain. Who knows for sure though. Another cancer mom told me her son's legs hurt while having Neupogen shots -- his ANC would be almost nothing then the next time it was checked after the shots, it would be 16,000. I can see how one's legs would hurt because of this. I'm anxious to see what Matthew's ANC will be tomorrow. Home health will come out to the house and collect some blood for a CBC tomorrow morning.

Well I'm going to go listen to Matthew's song again. I'll never tire of listening to it because it is so AWESOME!! Then we are going to watch the new Jimmy Neutron, hour-long show. Fun, fun, fun!

Thanks for checking in...
~Katrina

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October 13, 2003, Monday
Counts Today:
Home Health nurse came today. I drew the blood from his line for her though. She was fine with that and said that she would do the same if she were in my situation. She took it to the hospital for me.
WBC- 2.9
HCT- 39.6
PLTS- 254 *Yeah! I'm glad they are up because last Thurs. they were 124.
ANC- 406
Segs- 14
Bands- 0
Segs and bands are calculated with the WBC to determine ANC. That is why I've been listing them lately.

Neupogen Shot:
He has to have the Neupogen shot until his ANC is 2,000 or greater, so we still have a ways to go. I am hoping the medicine in the shot will kick in soon and really bump the ANC up FAST! It was really hard giving him that first shot. We both had tears in our eyes. I told him I didn't WANT to, but I had no choice, and he didn't have a choice whether to get it or not. It is getting easier now. We put Emla cream on his leg so he doesn't feel the poke of the needle, but the medicine stings really bad as it goes in. At first, he wanted it pushed in fast, but finally, we talked him into pushing it in slowly so it doesn't sting as bad. He likes it given slowly now. Kirk gave him the shot yesterday since he was home. Matthew really liked to hold my fingers. Kirk had the day off today for Columbus Day, so we did the same thing. Maybe Kirk can come home during his lunch hour and we'll do the shot then, since Matthew likes to hold my fingers and have Kirk do the shot. I like to give him as many choices as he can possibly get.

Port Access:
Yesterday after his noon dose of antibiotic, I deaccessed his Port and gave him a good, soaking bath. That is the first one he's had in a week. We filled the tub nearly to the top! Around 6 p.m., I put Emla over his Port site and at 7:30, I accessed it. I'm so thankful that I had the nurses at PCMC teach me how to do this. Kirk held Matthew's fingers and I did it just like at PCMC--completely sterile and everything. It worked great!! We got the best blood return ever. Yeah!!! I am so happy that worked well. Matthew didn't feel a thing, thanks to the Emla cream. Then I gave him his 8:00 p.m. dose of antibiotic.

How he's doing:
Matthew is still tired and takes a nap during the day. He also goes to bed quite early-around 7:30 or 8:00. He is finally finished with is 2 weeks of Dexamethasone (meany & munchy pill)!!! The last dose of that for now was yesterday. He took 4-1/2 pills a day for 2 weeks. UGH! Poor guy!!! His appetite was really hard on him and us this time. I could not believe how much food he demanded. His little face has the classic moon-shape that kids on steroids get and he has a potbelly. His belly button is stretched flat--it looks like an 8 or 9-month pregnant lady's belly button. Poor guy. But of course, he's still as cute as can be!! We went for a walk around the house a few times and down the driveway today. He has to get some exercise and get used to moving around again. He misses going to school a lot. He only got to go 5 days before radiation and heavy-duty chemo started. His class made him get-well letters. There is one from each child in his class. His teacher brought them to Matthew on Friday. She also brought him homework which he loves doing. He was glad his teacher came to see him and brought him these things. He can't wait for his counts to get higher so he can go again. Unfortunately, as soon as they are high again, he'll have to start Cytoxan.

Next CBC will be Thursday. He gets antibiotics by IV until Oct. 21st; Fortaz every 8 hours (12 p.m., 8 p.m., & 4 a.m.) and Gentamicin once every 24 hours (9 a.m.).

Thank you for checking in on Matthew. Please leave a note for him in his guestbook if you have a chance. He does love for me to read them to him.

~Katrina

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October 10, 2003, Friday
Matthew's official diagnosis for being inpatient: Pseudomonas bacterium. This is a genus of gram-negative bacteria.
Matthew was released yesterday around 1 p.m. Dr. Lemons was actually trying to get us home Wednesday after his blood transfusion and L-spar shot. Since Matthew didn't have any more fevers and the antibiotics were thankfully working, there wasn't any reason to keep us there. He said it would be fine to do the L-spar shot on Wed. instead of Thursday. So on Wednesday Matthew had his LAST dose of radiation! *YEAH!!* One of the radiation techs, Elaine, bought him a beanie baby frog because she said that Matthew was her favorite froggy. Every time he'd lay in the frog-leg position for his radiation, he would say, "ribbit, ribbit" to her. She loved that. It was really sweet of her. Matthew also asked if he could pick a prize for his brother and they let him. Things like that are just neat! They were so kind and empathetic all throughout his treatments.

After radiation, he needed a blood transfusion because Wednesday morning his hematocrit was 27. I knew he'd need one. By the time the blood was ready it was 2:00 and he needed 1-1/2 units. The nurses didn't push the transfusion. It took about 3-1/2 hours. Then he needed to be premedicated for the L-spar shot, so he got Benadryl by mouth this time instead of IV. It kept his more alert instead of knocking him out into a sleep. That is probably a good thing because when they were ready to give him the L-spar his blood pressure shot up to 149/97 and his pulse was 60. So it is good he was alert enough to talk to us and let us know that nothing hurt. They watched him very, very closely for quite a while. The nurse got the doctor right away and our room was pretty crowded. Gma and Gpa were there because they had come to pick us up and give us a ride to Provo since I had left my car at their house. Gpa had just taken all our stuff down to the car. The doctor said, "Well you've reserved another night here with us." They wanted to watch him closely. They put heart monitor leads on him. His BP wen to 135/90 the next time it was taken 15 minutes later. It stayed around that for a while...maybe 30 minutes. Then it went back to normal... 109/70.

Around midnight, it went back to 145/90 range for about 30 minutes. Then it didn't do that again. I didn't get much sleep that night because I was worried and the nurses needed to check on him so often. The night before (Tues.) I had had a nightmare that he had to go to ICU. It was so real, so I was worried. His BP didn't do that again thankfully and I was glad to see morning come and all was well.

They don't know quite why that happened. It could have been one of two things or both. 1- he got too much blood. 2- it was a reaction to getting Benadryl too close to a blood transfusion; his body just didn't like it.

Thursday morning he was premedicated for his L-spar shot with Solu-Medrol instead of Benadryl and he did great with it.

Discharge instructions:
Give Fortaz antibiotic by IV every 8 hours.
Give Gentamicin antibiotic by IV once every 24 hours.
Give Neupogen shots every day until ANC is 2,000 or greater.

Nurse Susie had me give her a shot of normal saline as practice for giving shots. I've never given a shot before, so I was really scared. It was good for me to do that on her. I know I can do this for Matthew. Neupogen helps increase the WBC so his ANC can come up quicker. Matthew watched me give the nurse the shot and he said that I would do a good job. He trusts me.

Matthew bottom is so sore too from the diarrhea he has had. I called a cancer mom friend about some stuff she used on her son, but they couldn't locate any of that in our hospital. I finally got some plain old Desitin for him and he said, "Aaaaahhhh" when I put some on.

After the L-spar yesterday Gma and Gpa took us to Provo. I put Matthew in the bath there first thing and he was so relieved. He just sat there smiling and said his bottom felt so good now. He needed a good soaking bath for his bum. I had been wiping him clean with warm washcloths in the hospital, but that just isn't the same as a bath. Then we left for home and got here around 6 p.m. last night.

It was so good to see Lane and Kirk again!!! They've been doing well. Like I said before I am so thankful to have so much help here!

Matthew is doing well and I'm getting ready to give him his first Neupogen shot in a few minutes. We've been sent all the necessary supplies by a home care supply company. We have all the saline flushes, heparin flushes, antibiotics in these cool isometric balls, and dressing change kit. I will have to change the needle on Sunday.

I was able to visit with Melanie and her mom Rebecca several times while inpatient. It was good to talk with them and see them. Melanie is doing much better and her WBC has finally come up to 1.1!! That is great progress. She's had a lot of trouble keeping her platelets up and has needed daily, if not twice daily transfusions of platelets. The biopsy she had a week ago revealed lung hemorrhaging instead of pneumonia. The surgeon placed 3 drains in her lungs to drain off the blood. That is a problem with not having enough platelets. So their goal was to keep her platelets above 50 at least. After doing that, the hemorrhaging went away and they were able to remove the drains. She is doing much better, but has a lot of retained fluid on her legs and abdomen. She has not had fevers in 4 days straight, so things are looking better for her now thankfully!!

~Katrina

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October 7, 2003, Tuesday
Gma and Gpa came up from Provo to visit Matthew and sit with him while I got a shower in the Parent Break Room. There are 2 computers here with DSL! So that is nice. It is a lot faster to update.

Gram-negative bacteria grew out from the blood culture taken from his Port. He had a dose of Gentamicin (strong antibiotic) this morning and they took more blood and blood from his arm for more tests. He had radiation this morning too. Tomorrow is the last day of radiation. Dr. Barnette said that the Gram bacteria are why his tummy was hurting so bad and why he had diarrhea. He did really well with the Gentamicin. The nurses monitored him extremely closely to make sure his blood pressure stayed within normal limits. He did fine thankfully and so he'll get another dose tomorrow morning. They will take another blood sample to see if the bacteria are gone. If it is then we will probably get to go home Thursday after his L-spar. If not, then they will try a different antibiotic. Once the bacteria are gone from his blood then they will send him home on IV antibiotics that I will give him through his Port. If no antibiotics work, then they will have to remove his Port.

Dr. Barnette said that everyone has these kinds of bacteria in their gut and it doesn't affect them. But kids with no immune system like Matthew being at zero, sometimes it can get into their bloodstream and that is when you will see fevers and pretty much what Matthew's symptoms were.

He's really doing great though. He's feeling much better now. Yesterday he slept a lot. He hasn't had any fevers since the Fortaz he got in the ER. He is eating fine now and playing games with me and doing craft projects that the Child Life specialist brings by his room.

Hopefully we will be home Friday. Lane and Kirk are doing well at home and Lane is handling it all well. We have lots of help from friends willing to watch him at anytime. I don't know what we'd do without such great grandparents, friends, and family. I thank everyone for their prayers.

~~Katrina

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October 6, 2003, Monday
Matthew spiked a fever early this morning...at 2:00 a.m. He and I were at Gma's in Provo, so all we had was an hour drive into PCMC. Gpa and Gma helped me drive. His ANC is zero so he was admitted. He was negative for Strep. He's doing well after some IV Fortaz and he's eaten well. But his tummy has given him a lot of pain and now he's got bad diarrhea. He's sleeping right now, but I need to get back to his room. Thank you for your prayers.

Katrina

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October 4, 2003 Saturday
~Home for the weekend.~
I haven't had a chance to update since last Monday. Things just got really busy during the week and when Matthew is on the meany and munchy pill (Dexamethasone) he is extremely needy and overbearingly demanding, as well as "starving all day long." His dose is quite a bit (4-1/2 pills every morning for 14 days), so it hit him quick this time.

Tuesday the 30th-- Matthew and I came home from his radiation appointment to find Lane sick. I knew immediately that he had Strep throat, because over the weekend I got it. After my first dose of Biaxin I felt better right away. (Have no CLUE who I got it from because I was only at the hospital and Gma's, then home to Vernal.) I wore a mask and stayed away from the kids the best I could while Kirk took care of most of their needs. Lane just has a tendency to get Strep easily no matter what precautions are taken even though he has had his tonsils removed. He gets it at least once a year. Well I had to take care of him and Matthew is on steroids. What a day! As I felt that I was going to stress out over all this, a thought came to my mind. It is something Heather Burns (a good cancer mom friend) always started her son's updates with, "another day we are blessed with..." That really helped me calm down and feel so grateful for this day even though it was stressful. Gma did her best to get Matthew's food and play with him, but he just wants mom. Lane had to stay in the back bedroom away from Matthew and Gpa. It isn't good for him to get Strep because it is hard on his heart. I took Lane to an after-hours clinic and they were very concerned and nice. This clinic had a pharmacy right there with it, so that was a blessing I didn't have to take Lane to Wal-Mart to get his Amoxicillin. When we got home from the clinic, there was a surprise!! I helped Lane get to the bedroom and out of the closet jumped KIRK!! It was so GOOD TO SEE HIM! He had been in training in Price and it is just an hour away, so he had decided to surprise us. The kids were really thrilled to see him too. Lane was soooooo terribly sick this evening. Strep hasn't affected him this way in a long time. I felt so bad for him. He was finally able to keep down his antibiotic and he went to sleep at 7 p.m. Kirk was able to help with Matthew's needs.

Wednesday-- He was still feeling yucky, but by afternoon he was feeling a lot better. I had scheduled Matthew's radiation for late afternoon so we could just go to the Candlelighter’s party right after that. We had to cancel going to the party because of Lane. I couldn't just go with Matthew and leave Lane at Gma's. That wouldn't be fair. Sibs count too. Needless to say Matthew was VERY MAD because we couldn't go. The Dexamethasone amplifies his anger, so to take the blame off me I blamed Candlelighter’s and said that they would not allow us to go because we had all been around someone with Strep. That helped a little, but he was still mad at me.

Thursday (Day 18)-- Matthew needed a platelet transfusion today and an L-spar shot. Dr. Barnette explained to me that since Matthew did not have a full-blown reaction, which includes hives, a large red circle around the injection site on the leg, fever, chills, and low blood pressure, that he would be fine to go ahead and have the L-spar kind of shot with a premedication of Benadryl. I trust that he knows best. He told me that there are kids who don't have hives, but only feel tightness in their throats and they have done well with being premedicated before the shot.

However, before getting the shot, he had to have the platelet transfusion because giving a shot with low platelets would not be good. His platelets were down to 13. That is very low. He didn't have petechiae and he didn't have any spontaneous bleeding thankfully. (When he was diagnosed in 1999, his platelets were 10 and he did have petechiae.) It only takes about 20 minutes for the platelets to transfuse. The nurse decided to give him the Benadryl before the platelets. I told her about how Matthew "freaked" out on Monday before settling down to sleep, so she hooked it up to the IV pump and had it infuse over a period of 10 minutes. That was so MUCH BETTER!!! Matthew's eyes slowly got droopy and then he slowly went to sleep. SHEW! I was relieved!

So after giving him Benadryl, he got platelets, then we had to wake him up for the L-spar shot. Now that wasn't so great, but what do you expect when you wake up a 5-year-old on the meany pill who is conked out because of Benadryl in order to give him "WHAT??!!??--a shot!???" He freaked out then and the nurse had to get help to hold him down for the shot. Poor kid. But he immediately went back to sleep after being disrupted. Also, the nurse did a post-transfusion CBC before giving him the shot and his platelets were up to 137 again.

He was monitored closely for 40 minutes after the shot. His blood pressure was taken every 15 minutes, as well as his heart rate. He did fine and there weren't any problems.

To get him to the car, I had him straddle my belly and hang his arms around my neck. The nurses were extremely busy and couldn't help me out to the car. I was fine. I just took it slow. He slept all the way back to Gma's.

Counts on Thursday:
WBC- 1.6
HCT- 31.9
PLTS- 13 before transfusion; 137 after
ANC- 1000; they jumped up from 500 because of the Dexamethasone--it increases ANC

Matthew has not showed any signs of getting Strep yet. We have been praying really hard that he doesn't get it.

Friday-- Radiation then drove home for the weekend.

Today I checked my e-mail, I found news from Candlelighter’s about a Holiday Event in December. There was also one for a Halloween party, but with Cytoxan coming up for Matthew, we won't count on that one. The one for December sounds exceptionally special. I hope we get to attend it. They have reserved a night for cancer children to ride the "Polar Express" to the North Pole. The Heber Creeper train which runs scenic rides from the town of Heber halfway through Provo Canyon and back to Heber is re-creating Chris Van Allsburg's book called The Polar Express. For a link about this, click here. Matthew will hopefully be in an easier phase of treatment and we just need something really neat to look forward to. It is 2 hours away, but I know it would be worth the drive.

Matthew has been sleeping a lot lately. He usually doesn't take naps or go to bed early, so we are thinking he could be getting low on red blood cells. We'll have to see Monday what his hematocrit is.

Thank you for your patience with the lack of updating this week. Thank you for checking in on Matthew again and your prayers. We know that he has been blessed through this hard phase of treatment. He's still doing well with no signs of getting Strep.

Monday Matthew has radiation, Daunorubicin, Vincristine, and L-spar shot. Tuesday is his last day of radiation. Matthew and I will leave Sunday evening to go back to Gma's, then we will come home on Tuesday after radiation. Thursday we will have to go back out for his last L-spar shot. Lane will stay here and go to school again. Friends will watch him after school.

~Katrina

Update on Melanie: When I talked with Rebecca (mom) earlier this week, unfortunately they are still inpatient after being in ICU for a week. So they've been there 3 weeks now. She keeps getting fevers and needs daily transfusions of platelets. The doctors could not determine the source of her fevers, so they keep her there until she is fever-free. Then they found that she does have pneumonia and she was supposed to have a lung biopsy Friday to find out what type of pneumonia it is. Melanie is supposed to be near the end of her treatment for AML with only a few spinals left and that is it. Rebecca said that she finally hit a point where "enough is enough." I can understand that completely. My heart goes out to them. Please keep Melanie and Rebecca in your prayers. It is so hard on the kids...and the parents.

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September 29, 2003, Monday ~Day 15~
Week two of radiation has started. Matthew is doing very well with it. He likes radiation and he isn't in any pain from it.

Counts today:
WBC- 1.6
HCT- 34.7
PLTS- 27
ANC- 500

His ANC is actually coming up a little. His doctor still wants him to be careful and wear a mask. He can go to Wal-Mart and a few places, but only during slow times. There is a Candlelighter’s party in Salt Lake on Wednesday evening. Candlelighter’s is an organization that does activities for children with cancer and their families. The party is outside at a park and there will be a magic show, a clown, dinner, and crafts. We've never been to any of these parties before because we live so far from Salt Lake. His doctor said it would be fine to go and Matthew doesn't have to wear his mask since it is outside. Grandma and Grandpa get to go with us too. It should be fun and something to look forward to.

Well notice his platelet count above?? It is 27!!! I couldn't believe it! On Thursday's update I should have said "knock on wood" after I wrote that I didn't think he would need a transfusion because 135 is a long way to 30. (They do a transfusion of platelets when it they are 30 or below.) He hasn't been bruising or having any nosebleeds thankfully. He was going to get a platelet transfusion today, but the hospital was OUT of platelets. I was instructed to watch for bruising, a bloody nose, and petechiae. He also cannot ride Grandma's scooter or do anything where he could fall and hurt himself. He will get his transfusion on Thursday. Also on Thursday he is supposed to get another L-spar shot; however, that is in limbo right now because he had a reaction to the shot today.

It will be discussed as to whether he should get another kind of shot instead of L-spar. He's never had a reaction to any of the shots before, but today, 10 minutes after giving him the L-spar shot, he and I were sitting there playing a game at the table and nurse Dan was getting ready to start Matthew's Daunorubicin. Matthew put his hand on his throat and said, "My throat feels tight." My eyes got wide and the Dan said, "Do you itch anywhere?" Matthew said that his back felt itchy. Dan looked at his back. There weren't any hives. There were none visible anywhere, but Dan asked another nurse to get him some Benadryl right away. He was given Benadryl by IV and within 1 minute, Matthew said that his throat didn't feel tight anymore. I trust Matthew's description of things and he has never, never, never used the term "tight" when referring to a sore throat. Allergic reactions are very serious and if he is indeed allergic to it, then the next time it is given, it could cause anaphylactic shock. He could be given IV Benadryl prior to the L-spar shot on Thursday but I don't know if that is worth the risk. I am anxious to find out what his doctor decides.

The reaction from the Benadryl was like nothing I've ever seen before in him!!! It helped him, yes, but oh MY!!! He wigged out with it. Dan said that next time he wouldn’t get THAT much. Within 5 minutes after getting it, his eyes were drooping. I had him go lay down. (Another aspect to the day is that we had to go upstairs to the BMT clinic (3rd floor) for this because there is construction in the regular clinic. All oncology patients are being seen on the 1st floor in an area called the Rapid Treatment Unit in the ER while construction is going on. There are only 5 rooms in the RTU, so any patient that needs things that will take a while, like a transfusion have to go to the BMT clinic to have it done. We got up there and THEN found out there were no platelets. Dan was nice and let us stay up there anyway to get the Daunorubicin and other chemo. Well there aren't individual rooms up there. Only an area with these lounge-type chairs that lay back. Matthew couldn't take his mask off since we weren't in a private room.) Ok, now that that is explained, you will understand this next part. When Matthew lay down on the lounge-type chair, he was really tired but then his arms started twitching and he was jerking them. He kept trying to get comfy and he was tossing around. Then he just started kicking his feet and screaming. He yelled stuff like, "I want my own room! I want to take this stupid mask off! I can't get comfy!" It was terrible. He's never acted like that. FINALLY he laid his head on the arm of the chair with his blankie under his head and I started to rub his head. (He wouldn't sit on my lap and lay his head on my chest either.) But by rubbing his head he finally calmed down and got comfortable and went to sleep. I was so RELIEVED!

When the Daunorubicin was finished going in (it only takes 20 minutes), then Dan checked Matthew's leg where he had the shot and it was fine. It was 11:45 and Matthew had been asleep for only 15 minutes. He kind of woke up when his leg was checked, but conked out again quick. Dan said there were not any other kids coming up there so we could just stay and let him sleep for a while if I was ok with that. I asked Dan if he could keep an eye on Matthew while I went to the pharmacy to pick up the Dexamethasone pills. He did that and when I returned I just decided to let Matthew sleep a little while longer here. We stayed until 12:30, then Dan helped us get out to our car. He got a wagon with a nice soft blanket in it for Matthew to ride in. Matthew laid down in it and once in the car, he conked out again. He slept solid all the way back to Gma's house and I carried him in the house and laid him on the bed. He never woke up and he slept until 3:30. We kept checking on him and he was fine.

Now tonight the boys aren't tired. Go figure right. We rented Holes to watch. It is a really cute show. Now I'm in their bedroom using Gpa's computer and typing while trying to get them to just lay there and ignore me and go to sleep. Matthew is asleep now and Lane is watching me type while in bed.

So that is it for the crazy day. So Candlelighter’s party Wednesday evening, transfusion of platelets Thursday, and we will see about the next L-spar shot on Thursday. He might just get the PEG shot again instead.

I am thankful that Dan was right on top of things today and reacted calmly but quickly. I am thankful that Matthew is fine and doing well. I am thankful for all the safe trips we have had to take to Salt Lake. I am also thankful that Lane did so well on his schoolwork today with Grandma! He wrote a GREAT story about the desert for an assignment and drew pictures for it too. Grandma gave him his math test as well and he made a 100!

~Katrina

p.s. (As if this already isn't long enough!) Sorry, I had to say that Matthew LOVES the garbage truck joke, the moosical cow joke and the pig-oinkment joke left in his guestbook. I don't know why he picked those ones to memorize, but he did and he proudly told them to all the nurses, doctors, and radiation therapists today. It was really cute.

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September 25, 2003, Thursday ~Day 11~
Matthew had his last dose of Ara-C at the 273 mg dose and last dose of Etoposide today. It took right at 2 hours today for the chemo to go in plus an hour for the saline bolus. He ordered cereal for lunch from the cafeteria.

CBC today to check the hematocrit:
WBC- 1.1
HCT- 26.2
PLTS-135
ANC-300

The hematocrit didn't fall too much from Monday, but since the weekend is coming up, he got a blood transfusion today. (That was another 2-hour wait.) Now his cheeks are back to their normal rosy color. He did fine with the transfusion; no reactions.

His platelet count fell from 235 to 135. They transfuse platelets at 30, so they still have a ways to go. I don't think he'll need a platelet transfusion.

His hair is falling out pretty good now. It has been very thin for the past month. Today at clinic is was all over his shirt and all over the blanket I rolled up to use as a pillow. This was the first day I have noticed this much at once. I expect it to be all gone by Sunday.

We still have to stay indoors most of the day because of the smoke from the wildfire. Yesterday it did clear up for a few hours, so Matthew was able to ride Gma's battery-operated motorcycle around for a little while. He loves it!

Tomorrow we are going home for the weekend right after radiation. We will take Lane up to the hospital with us so we can just leave straight from the hospital for home. He's been very curious as to what the radiation room looks like and all that anyway. We'll return on Sunday night to Gma's for next week's radiation and chemo.

Thank you for checking in on Matthew and keeping him in your thoughts and prayers. Thank you for the great jokes! He loves them! You should hear him just laugh and laugh; it is cute. ~Thank you~

~Katrina

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September 24, 2003, Wednesday
Today it is so smoky here in the valley because of a nearby forest fire. The wind is blowing thick smoke here and visibility is down and there is a strong odor of fire outside. Therefore, Matthew cannot go outside unless he has a mask on. Since he has a cough and low counts, it is safer just to play indoors today. We've played several games of Go Fish, Hangman, Don't Spill the Beans, Checkers, and worked several puzzles. Grandma does have lots to do here so that is nice. He doesn't want to go for a ride in the car to "get out of the house" because he's in the car so much anyway. We are doing good and keeping our spirits up. It is nice just playing and not worrying about cleaning the house, etc. Grandma is even doing our laundry! She is great!! Thanks for checking in.

~Katrina

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September 22, 2003, Monday ~Day 8~
(Written Sept. 23rd)
Radiation:
Matthew's first day of radiation went well. He loves it. He got to ride on the "spaceship" again. That is all he talked about yesterday when we got back to Gma & Gpa Harris's house was how much he loved radiation. It is so easy after all, to just lie there and hold still for a few minutes. He was in and out of the room in about 10 minutes on Monday. Today it was about 6 minutes. The beam is only on for 20 seconds! I counted down from when I saw the screen say BEAM ON!! to when the techs all said it was clear to go in again. Matthew also got to pick a prize yesterday AND today (he probably will get to everyday). So that is another incentive to love it.

Mom, on the other hand, wanted to run in and grab him off the table and run away. One of the techs asked me yesterday how I was doing. That was unexpected for me I guess, because my eyes immediately welled up with tears and I had to look away. He patted my back and said he was sorry. That is the best thing to have said at the moment. I know it is killing cancer cells and that we never want this to return again so we have to do this...I just wish that it didn't sacrifice his chance to have his own kids someday. I pray that this does indeed work 100%, that every single cancer cell is blasted away forever, and that he will someday understand how lucky he is to be able to adopt a child that needs someone to love and care for him or her.

Chemo:
So after radiation on Monday, we went to the clinic for his Ara-C, Etoposide, and CBC. I'll start with the CBC.

CBC--his counts are very low now.
Last week his ANC was 1,500. The nurse last week said that they might drop to around 700 by this week. Well his ANC is 200. So Matthew can only go to the hospital and home. That is it. And when he's at the hospital, he has to wear a green mask that fits snugly over his nose and mouth. It gets stuffy for him to breathe and he HATES to wear it. He gagged the first time he put it on and I thought he was going to puke in it. Thankfully, he did ok wearing it to his radiation appointment today. He had to wear it the entire time he was getting radiation. The nurse said when he comes to clinic on Thursday that once he is in a room and the door is closed then he can take the mask off.

Hematocrit is low too. It is 26.8 and the nurse said they do a blood transfusion at 25.0. She said they would recheck it on Thursday and to be prepared to either stay for a transfusion after his chemo or to come back Friday morning first thing for the transfusion.

All the counts:
WBC-1.2
HCT-26.8
PLTS-235
ANC-200

Now for the chemo: Ara-C and Etoposide.
One thing the nurse has been doing is taking Matthew's blood pressure about every 20 minutes or so while it is going in because the Etoposide can cause one's blood pressure to drop. They've been doing this all along. Today it did affect his blood pressure. It was 108/64 when we came to clinic and during the infusion, it went to 94/57 and then to 91/71. At the first drop of blood pressure, she slowed the rate at which the chemo was going in and then after the second drop, she slowed it even more. She said that is what you do if it drops, just slow the rate down. At the end of the infusion, after slowing it down quite a bit, his blood pressure was back to where they felt comfortable--100/63. This caused us to be there a lot longer. The total infusion time was 2 hours and 45 minutes. Add the time for hydration of saline and we were there a good 5 hours. The nurse ordered lunch for Matthew from the cafeteria. She said it was free for him. He got some fries, which he said I could eat. I was starving, so I did. (Thanks Matthew!)

He's doing well and having fun playing with his cousins (Brady and Blake) who are here at Gma's house too. They are off-track for school (they go year-round). They aren't sick or anything and have been spending the night too. So at least Matthew and Lane can have some fun with them. Matthew looks quite pale to me, but his energy is fairly good. He does have a cough (he's had it for about 2 weeks now) and the doctor said that will be something to keep a close eye on with him having a low ANC.

Project while waiting for chemo to infuse:
The artist whom I mentioned in last week's update, asked me today if Lane had drawn a picture for me to transfer to a tile. I had remembered to have Lane draw one and brought it to clinic with us. He drew a GREAT picture of a snake with a desert scene complete with cacti and a desert sunset. So that was a wonderful diversion for me to transfer it to the tile and then use the glazes to paint it. It has so much detail in it, that I wasn't able to finish it. So I will on Thursday. I wasn't able to work on it the entire time I was there because I played some rousing games of Go Fish with Matthew. I finally won a game! No kidding that his score was about 30 to 0 and I was TRYING to win! He was glad that I finally won a game. We also played a dice game that he made up and then he wanted to watch cartoons, so that is when I started on Lane's tile. The artist lady (I need to ask her name again) said she would "fire" Lane's and Matthew's for sure this weekend and show them to me all completed next Monday. I'll bring the camera and take a picture of both of them.

Thank you for your thoughts and prayers and thank you for the great messages in the guest book.

~Katrina

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September 18, 2003, Thursday ~Day 4~
(Written Sept. 19th)
Matthew is doing well and his chemo today went well. He got Ara-C and Etoposide. We were in clinic for over 3 hours. With all the saline he gets hydrated with, I requested a room by the bathroom. He went potty at least 5 times while we were in clinic and on the way home, we had to make 2 side-of-the-road potty stops. Luckily I was able to find some restrooms for him to use.

While in clinic he enjoys keeping busy with the things he brings in his backpack. He brought paper, pencils, crayons, and a few toys. He likes to show the nurses all his STUFF. He really likes to draw houses with flowers and trees, rainbows, and our family including the pets. He usually is happy if he has pen and paper. He has filled countless notebooks on our trips to Salt Lake and during the waiting time. He not only draws while we are driving or waiting for chemo, but at home too. If he is watching TV, he usually has a notebook and pencil and draws while watching TV. He's been an "artist" like this ever since he was 2-1/2-years-old. He has said that when he grows up he wants to be a person that draws houses. Maybe he'll be an architect like his Uncle Kyle.

Radiation Simulation at 1:00:
This was an appointment to get him set up for how it'll be starting on Monday. They got him positioned how he'll need to be for all his treatments. It is the frog-leg position. They made leg rests for him out of this mold stuff which puffed up into foam, then hardened while he was laying in it. It is a mold that he will lay in for every radiation treatment so his legs don't get shaky and move. He did really well with everything in radiation and when the table went up, then spun around clockwise, the technician said it was a "spaceship." Matthew thought that was really cool and then the red light they called his "alien blaster." That was cool to Matthew as well. They positioned the red light and the radiation beam field right where it would need to go, then had the doctors come check to make sure that would be ok. They made a few adjustments to the light field, then they were finished. So everything is set for Monday and all the other radiation appointments.

Playdoh Story:
I've debated on whether to put this on here or not--it is his JOURNAL, so why not, I decided. It relates to his cancer too.
This past Monday evening after returning from a long day at the hospital, he and Lane were playing with Playdoh on the kitchen table. Lane was making roads for his Hot Wheels cars to drive in and Matthew was flattening his out with the rolling pin. Then he said, "Mom, look. This is a kid with cancer in the brain. The doctor goes like this," --he took a pencil and cut a round circle towards the top and picked up the piece he had cut-- "he takes it out like this and the kid gets all better."

He understands completely.

Thank you for checking on Matthew today and thank you for your thoughts and prayers.
~Katrina
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September 15, 2003, Thursday ~Day 1~
(Written Sept. 16th)
It was a really long day in clinic today. He got Ara-C and Etoposide[VP-16]. They mix them together in one dose. He has to have a saline bolus prior to getting the chemo. Then the infusion takes 2 hours and he gets another saline bolus after the chemo. The nurses know it is going to be a long day for us so the minute we walk into clinic, Matthew had a room and they got the first saline bolus going. He did well with it. He always gets Anzemet [antinausea med] before the chemo too.

He just watched TV, drew some pictures, and played some games. We bought the game Boom-O and had fun learning how to play it. He is a math whiz! You have to add the cards played by 10s or 5s up to 60. If you lay down a card to make it go over 60, then one of your "bomb" cards has to explode. You get 3 "bomb" cards. When they are all turned over, then you lose. He did so GOOD with adding! Even when it was 15 and I'd lay a 10 on top, he would automatically say "25!" Very good for a 6-year-old kindergartner I must say! We also play games like Uno and Guess Who.

Well we have to go back out on Thursday for the same thing. Last night we spent the night at Grandma's house in Provo since our appointment today was at 8:30 a.m. It is only 1 hour from Provo to Salt Lake; however, it is rush-hour traffic I'm driving in! I don't like that either, but I didn't feel like leaving our house at 5 a.m. twice this week. Thursday I will do that. UGH.

Well thank you so very much for checking in on Matthew! We truly appreciate all the support and love.
~Katrina
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~ Consolidation Calendar ~

Normal Blood Count Values
WBC (White Blood Cells) - 4.8 - 10
HCT (Hematocrit)- 32 - 42
PLTS (Platelets)- greater than 150
ANC (Absolute Neutrophil Counts)- 3,000 to 6,000 -- ANC below 500 is felt to place him at greatest risk for infection.

September 2003

Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
14
CBC Counts
WBC 3.2
HCT 34.3
PLTS 309
ANC 1504
OK to start Consolidation

 15 ~Day 1~
Ara-C 273 mg
Etoposide 137 mg
Spinal
Check CBC-did on
Sunday



 16








 17








 18 ~Day 4~
Ara-C 273 mg
Etoposide 137 mg

Radiation Simulation 1:00



 19








 20
21







 22 ~Day 8~
Radiation
Ara-C 273 mg
Etoposide 137 mg
Check CBC
WBC-1.2
HCT-26.8
PLTS-235
ANC-200		 23
Radiation






 24
Radiation






 25 ~Day 11~
Radiation
Ara-C 273 mg
Etoposide 137 mg
CBC Checked:
WBC-1.1; HCT-26.2
PLTS-135; ANC-300
Blood Transfusion
 26
Radiation






 27
28








 29 ~Day 15~
Radiation
Daunorubicin
Vincristine
L-Spar shot
Start
Dexameth. Pills
Check CBC
WBC-1.6; HCT-34.7
PLTS-27; ANC-500
Needs Platelet Transfusion		 30
Radiation
Dexamethasone Pills

October 2003

Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
1
Radiation
Dexamethasone Pills





 2 ~Day 18~
Radiation
L-Spar shot
Dexamethasone Pills
CBC Checked
WBC-1.6;HCT-31.9
PLTS-13;ANC-1,000
Platelet Transfusion		 3
Radiation
Dexamethasone Pills





 4
Dexamethasone Pills
5
Dexamethasone Pills

Admitted to PCMC
for fever and ANC ZERO
Counts:
WBC-.5;HCT-31;
PLTS-145;ANC-0;
Segs-4;Bands-0


 6 ~Day 22~
Radiation-put off until Tues.
Daunorubicin
Vincristine
L-Spar shot
Dexamethasone Pills
He did get his chemo today in his hospital room
Gram-negative bacteria grew out from blood culture; started Gentamicin antibiotic		 7
Radiation

Dexamethasone Pills
Antibiotics working-Matthew is fever-free; blood cultures show no more bacteria





 8


Dexamethasone Pills
LAST DAY OF RADIATION! YEAH
Counts:
WBC-.4;HCT-27.2
PLTS-165;ANC-100
Segs-25;Bands-0
Blood Transfusion


 9 ~Day 25~
L-Spar shot

Dexamethasone Pills
RELEASED FROM HOSPITAL
Counts:
WBC-.4;HCT-42
PLTS-124;ANC-252
Segs-54;Bands-9


 10
Dexamethasone Pills

Mom gives IV antibiotics and Neupogen shot at home


 11
Dexamethasone Pills

Mom gives IV antibiotics and Neupogen shot at home
12
Last Day of
Dexamethasone Pills

Mom gives IV antibiotics and Neupogen shot at home


 13 ~Day 29~
Delayed because of Infection
CBC by Home Health Nurse
Counts:
WBC-2.9; HCT-39.6
PLTS-254; ANC-406
Segs-14; Bands-0
Glad the platelets have increased-so no transfusion. Shew!
Mom gives IV antibiotics and Neupogen shot at home
 14


Mom gives IV antibiotics and Neupogen shot at home.

Neupogen shots given until ANC is 2,000 or greater
 15

Mom gives IV antibiotics and Neupogen shot at home






 16
CBC by Home Health Nurse
Counts:
WBC-14.4;HCT-34.4
PLTS-116;ANC-9000
Segs-56;Bands-9
NO MORE NEUPOGEN SHOTS! YEAH!

Mom gives IV antibiotics shot at home.		 17

Mom gives IV antibiotics at home






 18

Mom gives IV antibiotics at home






19

Mom gives IV antibiotics at home






 20






Mom gives IV antibiotics at home.		 21

CBC by Home Health Nurse

LAST DAY Mom gives IV antibiotics at home
Counts:
WBC-3.4; HCT-33
PLTS-130; ANC-1394



 22 ~Day 29~
RESUME CHEMO
Cytoxan-910 mg
Ara-C 75 mg
Spinal
Start 6-TG pills start


 23 ~Day 30~

Ara-C at home
because we will
leave Port
accessed


 24 ~Day 31~

Ara-C at home






25 ~Day 32~

Ara-C at home
26








27






 28








29







 30 ~Day 36~
Spinal
Cytoxan-NO Cytoxan (wrong about needing that again)
Ara-C 68.3 mg

Counts:
WBC-.5;HCT-21.5
PLTS-25;ANC-300
Segs-67;Bands-0
Blood transfusion & Platelet transfusion today		 31 ~Day 37~

Ara-C at home




 Nov. 1 ~Day 38~

Ara-C at home
2
Consolidation Phase Ended
 3

 4

 5
CBC Checked
WBC-1.0
HCT-25.9
PLTS-41
ANC-310
Segs-31
 6
Continuation Therapy Delayed a Week
 7
Blood transfusion.
Platelet transfusion.
Counts:
WBC- .5; HCT- 24.5
PLTS- 13; ANC- 100
 8

Matthew's 6th Birthday