From January 14, 2005 to October 24, 2005
::He is off treatment as of October 24, 2005::
This was his 8-week Chemotherapy Schedule
WEEK 1: Spinal (back poke) with intrathecal methotrexate. He does these without sedation now.
FOUR DAYS AFTER SPINAL: Cytoxan (cyclophosphamide), 1200 mg/m2 dose. His dose is 1164 mg; takes 1 hour to infuse. He has to have a 300 cc saline bolus prior to the Cytoxan and a 200 cc bolus post Cytoxan.
Can do this in Vernal now. First time in Vernal was May 24, 2004.
Take 6-TG pills. He has to take 7 pills every night for 4 days.
WEEK 2: Vincristine. Can do this in Vernal.
Take prednisone steroid. He takes 30 mg twice a day for 7 days. (This is the only prednisone spurt.)
WEEK 3: Vincristine. Can do this in Vernal.
WEEK 4: Count-dependent IV methotrexate and vincristine. Done at PCMC. He needs to be seen by them once a month.
WEEK 5: Off a week; count recovery.
WEEK 6:Count-dependent Adriamycin for 2 days, then 3 days of Ara-c at home. The Ara-c is given every 12 hours. This can be done in Vernal.
Take 6-TG pills again for 3 days, but at a lower dose than week 1.
WEEK 7: Off a week; count recovery.
This actually lasts about 1-1/2 weeks.
Start all over with the same routine.
::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.
Diagnosed with peripheral neuropathy January 2005. It is caused by the vincristine.
::Continuation Therapy 2nd Year Updates Below::
October 26, 2005, Wednesday
YEA!!! HOORAY!!! MATTHEW HAD HIS LAST CHEMO ON MONDAY THE 24TH OF OCTOBER!!!!!
He had ara-c, which is given at home (see list above) twice a day; so the last, official dose was at 8:00 p.m. Monday evening. The ara-c comes in a little ball-shaped device with tubing that attaches to his Port-A-Cath tubing. When it was finished, I asked him if he wanted to be the one to chuck it in the garbage this time. He picked it up and threw it across the room instead. Good for you Matthew!! I’d have done the same thing!
At his last chemo he got here in Vernal (adriamycin), his chemo nurse Tami, gave him a neat pillow with his picture on it. She did the edge of the pillow in gold because childhood cancer ribbons are gold. She also had a plain white pillowcase signed with congratulation notes from most all the workers in the hospital. She’s so awesome!!! We just love her!!
At his last chemo at PCMC on October 6th (methotrexate and vincristine), the nurses sang “Happy Last Chemo at Primary Children’s To You…” It was neat, and they gave him a quilt and a little remote control jeep. At this visit, his oncologist told us that he’d like Matthew to come for follow up appointments every 6 weeks and he needs to do that for a year. We can rotate each 6-week appointment with his pediatrician in Vernal and PCMC oncologists. Dr. B also said that he’d schedule Matthew’s surgery to get his Port-A-Cath removed for the end of November. (He did get it scheduled for November 23rd.)
Now back to Monday, the 24th!!!
Some wonderful friends stopped by in the evening to wish Matthew congrats and give him gifts. We appreciate them so MUCH!!! Melanie’s mom and dad came by with a dozen helium balloons and the Robots movie. The Merrell's (good friends down the street) came by with balloons to blow up and throw all over the floor, which they did! So fun!! They also gave him a Dinosaur Lego set and a bag with goodies in it and a huge bottle of bubbles! They ALSO gave Lane some candy and some money too. Very nice! We enjoyed phone calls from friends and family…they mainly spoke to Matthew and e-mails too. My good, good friend from Connecticut, Heather, (Ty’s mom) ---we’ve been online/phone friends for 5-1/2 years now--- she sent BOTH boys a card with a Toys R Us gift card enclosed!!!! They LOVED that and are scheming on what to get now. Also, the boys' pediatrician's office had 2 dozen helium balloons delivered to Matthew!!! They are so fun!!! So thank you so much to everyone for your congratulation wishes for Matthew and us.
It was actually a bittersweet day for us Monday because Lane got extremely sick Sunday and was worse on Monday. So to have it be Matthew’s very last day of chemo and dealing with Lane who was in terrible, terrible pain (in his head), was very difficult for us. Lane’s head began hurting really bad Sunday during the night and none of the headache meds I had were working. By Monday morning, it was hurting so badly that he threw up twice. I took him to the doctor around 11:00 a.m. and everything was negative: meningitis, appendicitis, throat clear, no fever. He asked if migraines run in our family and they do; my dad, my sister, and Kirk’s mom all get migraines. He said it could be a migraine or an atypical flu case. He prescribed Toradol (ketorolac). He said Lane could only take, at the most, 3 tablets in a 24-hour period. Well it didn’t work. After 2-1/2 to 3 hours, I called the clinic back and asked how long it was supposed to take to work and they said pretty much right away and to bring him back in. So I did, and the doctor wanted Lane to get a CT scan of his head. ****Talk about scaring me!**** I called Kirk and told him right away, and I added to my prayers (been praying all day for Lane’s pain to go away) that this would be normal. The doctor knew my worries but added that he wanted to see if Lane had a brain bleed or aneurysm as well. THANKFULLY IT WAS A NORMAL SCAN. I was so relieved. I called Kirk and he was very relieved too. Then he wanted Lane to get a lumbar puncture just to make sure it wasn’t viral meningitis, and he wanted to ADMIT Lane for 24 hours, because it was an invasive procedure and also to observe him and manage his pain. Well I said that I was sorry but I’d rather get him a stronger pain med than Toradol, and if he is still this bad tomorrow, then I’ll bring him back and do the LP and admit him. I was glad the doctor agreed with me. He prescribed Lortab this time and it worked. Thankfully, Lane was able to settle down and relax. Even though he was still moaning about his pain; he seemed to be in pain still but just not caring that he was in pain. His vomiting didn’t subside for another 7 hours though. However, he went long enough between puking that the pill was able to absorb. Finally at 2 a.m., he was able to sleep peacefully the rest of the night and slept good until 9:30 a.m. the next morning. He woke up yesterday a new kid. The doctor wanted to see him yesterday regardless of whether he was still sick or not, so when I took him in the doctor was so pleased to see Lane doing much better. He told me that he is not sure whether it was a migraine, an atypical flu, or even viral meningitis. He said that in rare cases, kids can have meningitis without neck stiffness or fever. I’m still holding out that it was not meningitis, but rather the other two possibilities. If anyone else in the family gets it, then it could be the flu or meningitis. If not, and Lane gets another bad headache like that down the road, we know it was a migraine. To end all this, we are so grateful for both our boys and for both of their healthy recoveries!!!!!! We just want to have healthy, happy kids. We love them so very, very much!
Matthew was very concerned about Lane and worried too. He wasn’t in the least bit upset that I didn’t have time to make his celebration cake or that we couldn’t go out to dinner as planned. He and Kirk went to get the three of us dinner at Arby’s and they brought it home. After dinner, we gave Matthew “hot and cold” directions to his MAJOR celebration gift from Kirk and I. He was thrilled to FINALLY get his Star Wars Lego TURBO TANK!!!!! 801 pieces later, he had it all put together without any help. He is happy, happy, happy to end his chemo and to get a gift that he’s longed for and which has helped motivate him to do a good job with his chemo treatments.
Kirk and I also had bought a Star Wars Lego set for Lane. He got to open it yesterday after Matthew got home from school. It was the Wookie Attack Lego set. Matthew is the one who picked it out for him because when the two of them had been drooling over Legos the last 8 months or so, Matthew said that Lane wanted that one. So Lane was really surprised to get it and happy as well. He’s been a GREAT big brother through all this. When Matthew was inpatient on Lane’s 10th birthday, he never complained one bit. He was very patient (as much as he could be anyway) whenever Matthew was on prednisone, and he was always very concerned about Matthew.
My sweet hubby surprised ME by buying me some roses and saying that I've been the best mom and nurse to Matthew, and how grateful he is for me. I thought that was soooooo sweet. **Thank you honey!**
Kirk and I are so happy that this 2 years is finally over, but as we end, we have our worries. As the years go by, and he remains in continued remission, our worries will subside. We’ll continue to have faith that we are all in God’s hands, and we’ll live with love and gratitude in our hearts for His blessings upon us.
That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ.
I found this scripture 6 years ago when Matthew was first diagnosed. It has meant a lot to me. Our faith is tested through trials, and sometimes it seems as though our faith is "tried with fire,” meaning that our trials are extremely difficult. Of importance, is that our trials are more precious than gold in the eyes of our Savior, and when we endure them well, our faith will grow and be found praiseworthy when He comes again. That scripture has helped me through a lot of our ups and downs and will continue to lift me up and give me hope.
Thank you everyone for your thoughts and prayers!
Take care and hug your kids tight!!
Love,
Katrina
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September 27, 2005, Tuesday
Matthew had vincristine yesterday here in Vernal. His ANC is still low so no school for another week. He's pretty bored!! His teacher brought by all his work again and that keeps him busy. He's been reading a lot of Magic Tree House books too. He is especially into the Research Magic Tree House books.
We may try to get together with Deegan (leukemia kid age 4-1/2 from Vernal) if he's healthy this week so Matthew has someone to play with one day. Deegan and Matthew love playing together despite their age difference. Deegan's family just got back from his MAKE-A-WISH trip to Orlando, Florida!!!! We are so excited to hear all about their trip!
Well Matthew's next appointment is on October 6th for IV methotrexate and vincristine. It will be at Primary Children's Medical Center, and it will be his last chemo at Primaries!!!! His VERY LAST chemo will be the adriamycin/ara-c week here in Vernal. Matthew is getting way excited about ending treatments. He keeps saying, "I can't wait until I end. I can't wait!" Yesterday he asked how many more port accesses and I told him after this one, there were only TWO left. He was so happy, happy, happy about that. On his own, he has decided that he wants me to make him a Halloween cake since his last chemo at home (the ara-c) will be on the 24th...close to Halloween. I told him I could certainly handle that.
So we are counting down and looking forward to a life with no chemotherapy and all the baggage that goes with it.
Take care everyone!
Katrina
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September 19, 2005, Monday
We were hoping that because Matthew started this last cycle with an ANC of a whopping 4000, that the Cytoxan wouldn’t lower it too much this time. However, it wasn’t to be. He had vincristine this morning and his counts were checked to see how they held up with the Cytoxan. His ANC is down to 144. So he’s homebound (no school or outings) until they come up, and we are crossing our fingers and praying that he does not get a fever! We’ve dealt with low counts every time with Cytoxan so we were expecting it, but hoping that they wouldn't be this low. But this was his LAST nasty Cytoxan!!! Yeah! One wonderful thing with his Cytoxan last week was that he didn’t get nauseated at all!!!! That was SOOOO NICE this time to not have him sick to his stomach and tossing his cookies everywhere. Zofran is definitely the best antinausea medicine for him.
He’s been feeling wonderful and we are so grateful. He’s had LOTS of energy, and it has been nice that he hasn’t been sick since that awful time back in May. (Knock on wood, knock on wood.)
Our friend Devin is ending his treatments for non-Hodgkin lymphoma and we are so happy for him! Way to go Devin!!!! Stop by and say hello and congrats to him if you get the chance. Devin's Web site
Take care,
Katrina
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September 10, 2005, Saturday
So much has been going on. First of all, our prayers have been with all those who have been affected by the hurricane and with the searchers, rescuers, caregivers, and volunteers. We couldn’t believe the devastation and heartache…so sad. This has made our family wake up and realize that we need to get a 72-hour kit for each family member so that we will be prepared if the unthinkable should happen.
The boys started school on August 22: Lane 5th and Matthew 2nd. Here’s their first day of school, taken later in the day after Lane got home. Matthew MISSED his first day because he sprained his ankle pretty bad Sunday evening while playing in the yard with the new puppy!! Only Matthew! I couldn’t believe it. He missed 70 days of school last school year and now he misses the first day of this one!? He was pretty bummed out about it though. He loves school. He tried really hard to walk later in the day, and he did make it to school the rest of the week. He wore the Ace bandage and did not use the crutches again.
Four days before school started, we got a new puppy. Our last lab, Jed, sadly had to be put to sleep last Thanksgiving. He got really sick and would have only suffered. He was a chocolate lab. We got this one from the same people who we bought Jed from and they gave us this one for free because they felt so badly about Jed. After the “Battle of the Names,” we finally settled on Cooper, but before that he was just Puppy for 4 days. He’s a cutie and a QUICK learner! He already knows sit and come. Click here for a few more pictures of him: Cooper Pictures
Matthew started his LAST round on his continuation therapy regimen on Thursday, September 8!!!!! He had a spinal at PCMC-without sedation again. Last spinal!!! It is so nice to say that. Matthew was very happy that this was his last spinal!! All went well during the procedure. Matthew did fabulous as well. Julie, Child Life, took pictures of him during the procedure, and explained that she is making a book about the procedure for other kids in the hospital to look at so they will understand it better. For a reward for his LAST spinal, I took him to Toys R Us and got him a Lego Tri-Fighter. He was thrilled. He also got to see every single Lego Star Wars toy in a display case. He stood there and drooled over the Turbo Tank. LOL He was more excited to see it “built in real life” than to get his toy. He’s going to get one at the end of treatment. It’s already been promised so I can’t surprise him with it, but I did surprise him today!! We also picked out some magnet sizzlers for Lane. They are pretty cool! He loved them.
Friday, September 9th he had a dentist appointment in Salt Lake and he had NO cavities!!!!!! That was most exciting!! Last time we went he had 7 cavities!
Matthew will end treatment on October 24th if he isn’t delayed at any of the count-dependent chemos in this round. His last chemo will also be given at home because it will be the Ara-c. So that is nice. He’s looking forward to it so much, as we all are!
Take care and thank you for keeping up with Matthew.
Katrina
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August 1, 2005, Monday
I got the kids' computer out last week and got the Internet set up in it again. We'll have to buy a new computer someday. Mine completely crashed. It kept frying the motherboards. I'm glad the hard drive is okay and it'll go in the new one whenever we get one someday. But some of my information was stored in my Outlook Express and I can’t get to it right now. The main thing is the guestbook. I can’t remember the password to edit out that weird Viagra entry and to edit out those weird symbols on some of the entries. (I have no clue why that happened either..sorry!) Anyway, for now I am taking out the link to the guestbook and ask that anyone wishing to leave a message for Matthew to please e-mail it to him here- E-mail and I’ll save them as usual for him. Thanks.
This has been a fabulous summer for Matthew. He's been feeling super and has been so healthy all summer. We've been swimming a lot and to Seven Peaks (cool water park) with aunts and cousins for the ENTIRE day! We all had so much fun. (I was given the “Wild Aunt of the Day” award because I went down the Boomerang slide..YIKES!, and one of the “wedgie slides”…YIKES!!! Plus I played and played with my little nephews, Erick and Wyatt, in the waves and just had a fun time all day. We stayed from opening to close and even remained sunburn-free...yeah! Taking breaks every few hours and getting a snack while I slathered more sunscreen on them did the trick. Also, I had Matthew wear his hat all day. He and Lane had so much fun with their cousins. Matthew and Desi (cousin 5 days younger than him) loved the Lazy River and the Wave Pool. They had their life jackets on and just had a ton of fun floating around.
We are planning a little get away soon with some friends and their kids. We are going to Denver for a few days. We plan on going to Six Flags and the Denver Aquarium. Matthew will be on his Adriamycin/Ara-c week, but he'll be fine. He has never got a fever from the ara-c (knock on wood), so Dr. Barnette said it would be a-ok for him to leave once he gets his adriamycin at our hospital locally. We always do the ara-c at home as usual, so giving that while on our trip will be fine with Dr. B. We don't want to bump that week of chemo because the following week is the first week of school. He can't get out of school on his FIRST day of school for adriamycin...that's no good. So we are looking forward to a little vacation to Denver with good friends. I’ll rent a stroller for Matthew just in case his legs wear out on him at Six Flags. He does have a hard time keeping up, so if we get one in advance he’ll be fine. The friends of ours have a girl Lane’s age and a boy one day older than Matthew.
Matthew is very much looking forward to ending treatment in October!!! He keeps asking over and over when he'll be all finished. He has a motivation for that too...besides no more spinals, needle accesses for chemo, puking, etc. etc... he wants a BIG prize when he ends treatment. He has asked for a Lego Turbo Tank. (Star Wars vehicle.)He has clipped out three different pictures of it from Lego magazines and other Lego instruction books. He carries them everywhere and drools over them all the time.
Well his chemo as usual has gone on this summer and he's done well with it. He had his 5th spinal with no sedation back on July 7. He did FANTASTIC! He got a prize for that as well as the 4 previous needle accesses. He's just getting really sick of everything and needed some motivation to stick with everything and cooperate. He got a Lego ARC-170 Starfighter. (A Star Wars vehicle.) He had so much fun putting it all together. He amazes me how simply he can follow those Lego instructions. Then he got Cytoxan right after the spinal. He always throws up really bad with that one. Dr. B ordered a different antinausea for it this time. Zofran--it is one I can give by IV every 4 to 6 hours instead of every 24 hours. It worked great!!! He was still a little nauseous but he never tossed his cookies. Yeah! Then he had vincristine a week later and his ANC had dropped to 200. (So no swimming or going to the movies that week but we still had fun at home.) He started on prednisone that week too. Then he had vincristine again the following week and his ANC was 775. Not too much higher..rats. He was also having a LOT of bone pain in his upper legs and arms for 3 days around the time when he got the 2nd vincristine and the next day he had a very mild temp...100.0. (This 2nd vincristine was just last Tuesday, the 26th.) Then he was fine and back to his normal self two days later. Then this past Saturday, the 30th, he got some weird spots on his face and back. More appeared Sunday and today. I called his case manager at PCMC and she said to take him in. I asked if it could be chicken pox again and she said that it is very likely. Dr. Pollary (their pediatrician) said that it definitely looks like chicken pox again. (Last time was in October.) He’s on acyclovir (antiviral medicine) to help get rid of it quicker and so hopefully he doesn’t get them too bad. Dr. Pollary said that kids with low immune systems who have had chicken pox before can get it again from their own bodies. It can lie dormant and come back at times of lowered counts. This must be what has happened, because we certainly haven't been around anyone at all due to his low ANC recently. At least he is doing really great! He’s not acting sick one bit and when they itch, a little Aveeno on them helps fairly quickly.
He’s supposed to get IV methotrexate this Thursday at PCMC, but we’ll have to see if he’s getting any new spots and whether the old ones are scabbed. Also, we have to check counts on Wednesday anyway. If they aren’t good, of course no chemo. We are just playing it by ear. If we do go out to get it, they’ll probably treat him with isolation care. The secretary will meet us in the parking lot, take us straight to a room, and then everyone who comes in has to gown and glove up. Then when we leave, they will have to have the room specially sanitized.
Take care and thank you for keeping up with Matthew despite the lack of updates here recently.
Katrina
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June 29, 2005, Wednesday
THANK YOU Heather for doing that update for me! You're the best!
Well it is so weird living without a working computer at home. The motherboard crashed. The tech guy at Kirk's work is helping us to find a replacement and he said he should be able to save the data on my hard drive. I hope so!!! So I am at the library typing this one. The boys are getting a load of movies...Beethoven (that dog movie) and lots of Ernest-type movies...remember Ernest P. World movies? Matthew loves them. He laughs and laughs!!! Anyway, the time with no computer has been good actually. I dove into my stack of pictures that have been piling up for 2 years and organized them, then actually finished the 2003 scrapbook. I had stopped when Matthew got sick again. It wasn't as hard as I thought it would be to do those pictures. I would often not know what to write though. I'd put the pictures in the book, then have to leave the room and go fold laundry while I thought about what to say. It turned out good. I'm glad I finished it and now I'm starting on 2004's pictures.
Matthew finished home ara-c on Monday. He did okay with it. He always felt puky in the mornings and one day didn't feel like doing much of anything all day. He's doing better now that he's done with it. We are going swimming this afternoon so I better hurry and end this update. I don't have time to check my e-mail through the server's web site right now. Sorry to anyone who has been trying to e-mail and I haven't responded!!! Hopefully the computer will be up and running soon.
Have a wonderful 4th of July.
Katrina
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June 24,2005, Friday
Matthew is doing great. He had Adriamycin yesterday and today. He'll have home Ara-c through Monday. Hope everyone is having a great summer.
Katrina's computer is down. She doesn't know when she will be able to check her e-mail. Thanks for checking on Matthew
Updated by: Heather in CT aka Ty's Mom
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June 10, 2005, Friday
Matthew had IV methotrexate and vincristine at PCMC yesterday. It was a long day for both of us. We are both tired of being in the car and don't want to go anywhere for a long time. We are just doing nothing here at home today. Matthew is feeling fine. The boys are playing with Legos and I'm trying to get pictures scanned in and on the web site from the Relay and Camp Hobe.
Katrina
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June 7, 2005, Tuesday
"Arrruuubba, rruuuubba, bubble gum!!!!!!"
Yay for Camp Hobe!!!
Matthew went to Day Camp at Camp Hobe yesterday. He loved it!!!! It's his first time to Camp Hobe. He begged to stay the whole week. I wish I could have let him. He's looking forward to next year's Camp to say the least. Lane and I had to hear that Arrubba Bubble gum song the whole way home. It was great! Lane is even considering going with Matthew next year. Lane is shy so the thought of Camp made him want to throw up, but once he saw it and saw the counselors, he felt better about the whole thing. Matthew and the rest of the Day Camp kids performed a luau for the parents for closing ceremony. They also sang the Arrubba Bubble gum song. Matthew ran over to us and told Lane that he would be so jealous of all the fun that he had! Matthew didn't care one bit that Lane and I went to see a matinee while he was at Day Camp (we saw Madagascar) in Toole. The weather was terrible in the morning. It was rainy and cold, but the campers didn't care. The counselors put the sunshine in camp for sure. They made sure the kids felt happy and warm with one activity after another. They were so cool. The sun finally did peek out and the weather was really nice for the closing ceremony of Day Camp. Matthew is VERY EXCITED TO STAY ALL WEEK NEXT YEAR!!! I got lots of pictures (practically a whole roll!) and I'll take them to 1 hr. photo tomorrow. (I really need a digital camera soon!)
Thanks to Aunt Sandy and Uncle Brett for letting us stay with you on Sunday night so we would have a shorter drive out to Toole for Camp Hobe. That was very nice of you and we had fun!
It was nice to see Brenna and her mom there. I met Brenna's mom while the campers were having their group photo taken. Matthew, Lane, and I then went up to get Matthew's art projects and his bag of stuff. When we came back down to the main area, I couldn't spot Brenna or her mom anywhere. I had wanted to meet Brenna as well.
Thanks for checking in on us. Matthew loves to hear from those who visit his page. Hopefully the guestbook will be working! Sometimes I think the server has problems and that creates problems for his guestbook. Sorry to any of you who have tried to sign, but couldn't in the past few days.
Thanks,
Katrina
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June 4, 2005, Saturday
What a great day we had Friday and Saturday!!!!
The Relay for Life in Vernal was held last night. It is so nice to meet with this area's survivors and other community members who come out to support these incredible survivors. It was Deegan (age 4, dx ALL Dec. 2004) and Lexi's (age 11, dx ALL Feb. 2005; treated with very difficult high-risk protocol) first Relay. Lexi has had lots of yucky chemo all week and has been throwing up a lot. We were so happy that she made it just in time to be honored during the Opening Ceremony. Her mom didn't think she would be able to make it, but she surprised us all! Deegan and Matthew were so cute! Since Deegan is just 4 and Matthew's feet have been killing him from the vincristine, the 2 of them had permission to ride their bikes around the track for the Survivor's Lap. They had a ball!!! Lexi made it on her own power, bless her heart. We were all so proud of her. Then we all walked around to look at the luminaries. Another survivor-friend who is 19 now, made Matthew a STAR WARS luminary!!!! Matthew was so EXCITED to say the least. He plopped down on the track and looked at it as close as he could. They had written, "Matthew Our Little Fighter" and "Yoda says: Brave as a Jedi he is" on the bag and had found some pictures of Star Wars characters which they glued on it. He loved it!! Deegan made him an Incredibles luminary and Melanie made him 4 luminaries that had his 1st grade school picture on it. Lexi's mom made one for Deegan, Matthew, and Lexi which said "Friends fighting Leukemia together" and had each of their names on it." As you can tell, we love the luminaries and the Relay.
This year's Relay also had some fun carnival games which were a huge hit with the kids!!! They had so much fun playing the games for little prizes and going down the huge blow-up slide. (Even Deegan's mom went down the slide! Go Mindy!) Then for the Luminary Ceremony Melanie spoke. She had a slide show of pictures throughout her treatment to go along with her talk. She is truly inspirational to many people. Lexi's mom told me that Lexi has been having an extremely hard time getting through the past 2 weeks of Ara-c given at home. It is making her very sick. She's been really sick with all her chemo so far. It is getting harder and harder for her to have that hope she needs, the desire to keep taking these dreadful medicines, so when they managed to make it back for the luminary ceremony, Lexi is old enough to take everything Melanie said straight to the heart. It brings tears to my eyes, tears of joy, knowing that Melanie was able to give that much-needed hope back to Lexi last night through her talk. Lexi's mom told me that Lexi ran to Melanie after her talk and gave her a hug and told her that she had given her hope again to get through everything. I felt honored too, that Lexi's mom would share that with me.
So today we went to pick up Matthew's luminaries. We always go back the next day because I save all of his. Deegan and his family were there too. And guess what!!??? Matthew, Lane, and Deegan got to meet Tuff Hedeman--retired 4 time World Champion Bull Rider!! See, the Lane Frost Challenge was being held in Vernal this weekend too. Lane Frost is a famous professional bull rider who was from a little town near Vernal. He lost his life while bull riding. So Tuff Hedeman was here for the Lane Frost Challenge. He came over this morning to the Relay and spoke for a few minutes. Deegan is a huge cowboy! He has his own horse and even has a "cowboy" name...Stony Ridge. LOL.. He's hilarious. In fact, the Make A Wish organization got tickets for Deegan and his family to go to the Lane Frost Challenge tonight and they get to sit in the VIP area. How cool is that!? Well Deegan and Matthew went up to get Tuff Hedeman's autograph and then everyone wanted pictures of the three of them together. It was neat. My Lane got an autograph too. Wish he would have gotten to be in the same picture as Deegan and Matthew, but he was okay about it.
THEN the kids and I went to the local American Bike Association's (ABA) BMX race in town. Back up to last Wednesday: I read in the paper about the race. We've always wanted to go check it out since Vernal finally has its own ABA approved BMX racetrack now. And in the paper it said that Saturday's race would be for the RACE FOR LIFE!! I called them up and told them about Matthew, Deegan, and Lexi. They wanted us to come. The others couldn't make it, so we went over to the racetrack this afternoon. Matthew still had on his Relay for Life Survivor shirt too, which was cool. The head dude in charge of the race, Troy, had Matthew come out on the track with him, and Troy explained to everyone about Matthew. Most of the racers were doing the fundraiser and had worked hard to raise money for the Leukemia and Lymphoma Society. One kid, all by himself, had raised $450 bucks! I'm not sure what the total was yet. Anyway, Troy had Matthew say over the intercom "On your mark get set go!" So fun!!! THEN Troy gave Matthew an honorary trophy!! It is huge! It says 1st place Race for Life ABA BMX June 4, 2005. Matthew had a ball. He loved it. Troy asked Matthew to be their spokesperson for next year. I hope we can raise more awareness of the Race for Life fundraiser here in Vernal. It was really neat that Matthew was able to be honored at this event as well. The racers were very good too. It was a lot of fun to watch them. They had racers from Wyoming and from Salt Lake City too. Very cool.
Thanks for checking in on us. Take a second and let Matthew know you were here. He loves to hear from those who visit his page.
Thanks,
Katrina
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May 31, 2005, Tuesday
I hope everyone had a good Memorial Day yesterday. We had a good day. We put our flag out in the morning. Matthew said, "Why do we put a flag up today? It's not the 4th of July." I explained Memorial Day to him and he helped me stake the flag up in the fence. We worked in the yard for a while and then it got rainy. Kirk worked out in the garage on his truck and cleaned up the garage with Lane's help. Matthew watched Star Wars Episode VI ---for the umptenth time. He is doing great and was extremely excited that were going to see Episode III. We saw it last night. It was not crowded much at all and his counts are good.
Matthew LOVED the opening fighting sequence. (We all did!) He was laughing so hard at R2-D2. I couldn't see Lane's reactions because he was sitting on the other side of Kirk. About the darkness of Episode III: We've talked a lot at our house about Anakin being tricked by the Dark Side and about his feelings as well. They were ready for it, but the things that he does when he obeys his new master were very sad. We were all sad that he did those things, and the kids said after the movie that it was too bad and was sad that he did those things. They remember Episode VI though, and are know that his goodness returns. Then they moved on to remember other parts of the movie. Matthew's favorite part was the beginning battle scenes with R2-D2 like I mentioned and Yoda---anything with Yoda he loves. Lane's favorite part was Obi-Wan's fight with General Grievous.
Matthew had vincristine today in Vernal. He is doing super and his pediatrician said he doesn't hear any signs of pneumonia. He is finished with his weeklong spurt of prednisone...thank goodness! Instead of a gazillion pieces of toast, this time he craved marshmallows, broccoli, and steak!! His food cravings are getting crazier each time he is on prednisone. He made it back to school the last few days. I went with him to make sure no child in his class was coughing badly. He wanted to go the last 2 days of school, so off he went. They didn't do much except watch movies and meet next year's teacher. He's happy about the teacher he'll have next year. We know her personally too, so she knows all about Matthew's situation.
The creek didn't flood us or anyone on our street this year (knock on wood...the run off isn't completely over yet). The boys have been wonderful about not going out to the creek without us right there and keeping their distance when we do go look at it. I'm really glad that they have taken the rules about the creek seriously.
I have been making luminaries for the Relay for Life. Matthew wanted one with Star Wars stuff on it. I couldn't find stickers anywhere in town. I finally found some stuff on the internet that would work. Then we were at Wal-Mart this afternoon and I found some stickers in a Star Wars coloring book. We bought that and will put a few on it as well. He loves his luminary. I also made one for Deegan, Lexi, and Melanie. They are all kids with cancer and live here in Vernal.
Thank you for stopping by to check on Matthew.
Love to hear from you, he would, in his guestbook. :-)
Katrina
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May 24, 2005, Tuesday
We went all the way to PCMC for Matthew's vincristine yesterday. Dr. B and Dr. A wanted to followup his pneumonia and resume his chemo there instead of having the chemo nurse here in Vernal give it like we usually do vincristine. Matthew will also be on prednisone for 7 days. He's looking wonderful they said. Dr. B was so grateful that Matthew recovered from being so very sick last week as quickly as he did. We are too!! We are also thankful again for all the prayers. We know they worked.
Yesterday was not a good day in clinic because Matthew's port wouldn't give a blood return. I knew it was on the verge of doing this. When I reaccessed him Saturday (have to reaccess every 7 days when on IV antibiotics, etc.), I had a hard time getting a blood return, and for Sunday's antibiotic, Matthew had to roll every which way to finally get a return. Yesterday the blood wouldn't come no matter what. Matthew automatically told them to just put TPA in it. We've had to do this before. It seems as though every 6 or 7 months, his port just doesn't want to cooperate. His nurse wanted to take that needle out and put a new one in. She tried the Numby Stuff to numb him but she didn't get all the sticky tape residue off his skin and the Numby caused a reaction with his skin and hurt really bad. He couldn't tolerate it at all, so she took that off and put Emla on instead. After an hour of waiting, and that access didn't work, Matthew said, "SEE!! I TOLD you that you would have to use TPA!" **Mental note to mom...no more reaccesses! Just go straight to TPA. His port is sometimes positional, but when it gets like this it just needs TPA.** So we had to wait another 30 minutes for the TPA to work and of course it did...thank goodness. We got a great blood return after that but then we had to wait again for his counts to come back. They were still good. His ANC dropped some after its high last week due to Neupogen shots, but it is still pretty good. We were the last ones to leave the infusion area yesterday and got home around 9:00 p.m.
Ever since we got home last week, we've been busy getting sandbags around our house. On Saturday, a lady from Channel 2 News knocked on our door!! She interviewed Kirk about all our flood preparations. I guess they chose our house because we live closer to the creek than others on our street. But the crazy thing is that in 1983 when it flooded really badly here, our house didn't get ANY water in it at all. The water went in front of our house. We are sandbagging anyway, just in case, because you can never predict what water will do.
Matthew is looking forward to going to Camp Hobe, in June. Dr. B said they could hold off on giving Matthew IV methotrexate and vincristine a week. He's supposed to get that during the Camp Hobe week, but Dr. B said it would be a-ok to get it the week after Camp Hobe. Yay!
We are also looking forward to Vernal's Relay for Life on June 3rd. Melanie will be speaking at the Relay's Luminary Ceremony. I'm sure she will do a wonderful job!
Thank you for checking in on Matthew! Feel free to leave him a message in his guestbook anytime.
Katrina
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May 20, 2005, Friday
We are again so THANKFUL for everyone's prayers for Matthew. He is regaining his strength here at home and doing well. He's not been back to school yet. I don't plan on sending him either. Next week is the last week of school anyway. Maybe next Thursday or Friday he can go and I'll go with him. We don't want him to overdo it or be around lots of people right now. He is getting up and moving around the house fine. He goes outside and lies in the hammock too.
For Lane's birthday, Kirk picked out a remote control Jeep instead of a new bike. It is cool. It's a big one and goes really fast. Lane has been having a lot of fun driving it all over outside. We got that instead of a bike because Kirk said he couldn't find a decent bike. Lane also chose take-out Chinese food for his birthday dinner. Also, yesterday I let him stay home from school because he REALLY wanted to and, well, I wanted him to too!! After all, Matthew and I hadn't seen him very much in 5 days! His class was going on a walking field trip anyway, so he didn't miss much. It was good to have him home. I'm ready for them to be out of school for the summer!
Matthew is BEGGING to go see Stars Wars Episode III. (Actually, MOM REALLY wants to see it too!!) He says, "My counts are high enough! I'll be fine!" Kirk and I have said, "Not right now." We'll see how he is doing (counts, etc.) on Memorial Day. This is a small town. Maybe by then everyone will have seen it and it won't be crowded in a week! We have all the OLD Star Wars movies on VHS. The kids have watched them since they were 4 years old. We have the Episodes I and II as well. They are prepared for Anakin to become evil in this one, although I think it will still be sad for all of us.
Anyway, things are getting back to normal around here. We are very grateful for Matthew's resiliency and for his quick recovery from this serious illness. In the future, his oncologists are going to perhaps look into why he keeps getting pneumonia. He may have a chest CT scan, a bronchoscopy, and other tests to help determine what is really going on down there in his lungs.
Thanks again for checking on him and for your continued prayers!
Katrina
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May 18, 2005, Wednesday, 12:00 p.m. HAPPY 10TH BIRTHDAY LANE!!!
AND MATTHEW IS BEING DISCHARGED TODAY!!! JUST WAITING FOR THE IV ANTIBIOTICS TO GET HERE FROM HIS IV COMPANY, THEN WE ARE ON THE ROAD TO HOME. His ANC is way up thanks to the Neupogen shots. Today his ANC is 6900!!! YEAH!! Matthew was really excited about that because it means NO MORE SHOTS!!! He's doing really well. He'll be on IV antibiotics until the 29th of May. His vincristine and prednisone due this week were delayed until next week. His oncologist wants us to come out here to PCMC for that on the 23rd instead of doing it in Vernal. They want to follow his pneumonia very carefully.
It is Lane's birthday today. Yeah! Aunt Sandy and Uncle Brett had a little party for him at their house last night. Lane got to play with his cousins Brady and Blake on their trampoline and play Playstation. Gma Harris bought him a cake and they had pizza. Brady gave Lane a new PS2 game, but we already had that game. Brady really wanted it so Lane gave it back to him and Brady gave Lane 20 bucks!! Lane was thrilled with that!! The other day when Gma and Gpa Harris took him birthday shopping with money they had given him, Lane looked and looked. He drug them to Sportsman's Warehouse, Gart Bro. Sports, the mall, etc. He finally bought 4 new arrows for his bow and arrow (he'd lost all his others) and he has 21 bucks left. He is saving for a nice pair of waders to go duck hunting with Kirk and not be cold and wet. Kirk and I told him that tonight he could choose anywhere he wanted to get take-out from once we got home. Kirk is going to go to Wal-Mart sometime when we get home and get Lane a new bike. He thrashes bikes so quickly. That means he puts them to good use right!?
We are so thankful for everyone's prayers and that Matthew got well so quickly. He was so very sick and it is a miracle he is recovering this fast. We know that Heavenly Father did bless his body to recover.
We are so deeply grateful.
Love, Katrina
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May 17, 2005, Tuesday, 10:00 p.m.
Dr. Afify, who is Dr. Barnette's colleague, wanted Matthew to stay another day just to make SURE he was OK. She said that since he was so sick and had that pleural effusion too, it would be best to keep him one more day. Of course we agreed. We will do whatever is best for our big guy!
He's doing really well today!!!! I had him sit in the rocking chair for awhile today and play online games. He is getting out of bed now to go to the bathroom. He agreed to go for a little walk down the hall of the unit. We put his mask on and went to look for our tiles that we made 1-1/2 years ago which were used in the decorations of the new unit. We found them all. To see them click here: Tiles Page. His room was down the hall where his house tile was located, so we saw it every time we walked to his room. I love all the tiles that children, nurses, parents, doctors, etc. made. They are all so good and just add so much to the atmosphere to the unit.
Matthew told me this today:
Mom, I know why I got better so quick. It's because dad gave me a priesthood blessing before I left in the ambulance.
I just hugged him tight and said that I truly believed that too and that I was so grateful that dad could do that for him. He said he was very grateful for it too.
Later today, Lane and Kirk came up for a visit. They are very strict about kids under 12 visiting because they said it is still RSV season. They had Lane put on a mask at the entrance to the unit and he could only stay 10 minutes in Matthew's room and he had to keep his mask on the whole time. I showed him his tile that he designed and that I painted for him. He was thrilled to finally see it finished and to see where it was placed on the unit. He enjoyed his visit but he did not like wearing the mask. We decided to get a wheelchair for Matthew and we all went outside to the Angel Garden in front of the hospital. Lane always enjoys pushing Matthew's wheelchair for him. We were glad they were able to come visit today.
Next they are going to Aunt Sandy and Uncle Brett's house for dinner and to let Lane play with his cousins and have a mini-party for Lane because TOMORROW is Lane's 10th birthday!
Tonight Matthew and I watched Ernest Goes to Jail. Aunt Annette let us borrow it. Matthew laughed so hard! I was laughing because Matthew was laughing! He's got the best laugh!!!
Thank you again everyone for your prayers!!
Katrina
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May 16, 2005, Monday 8:30 p.m.
We would like to thank everyone for their prayers on Matthew's behalf. Our prayers have been answered practically overnight. I was sure Matthew would need a chest tube to drain the fluid because when I checked on him at midnight his respiration rate was still up into the 50s. This morning when I returned to the ICU -- (the nurses encourage parents to get their rest during the night but at anytime you feel you want to check on your child during the night you are welcome to do so. The nurses will come get the parents or have them paged if anything changes with the child.) --So when I returned to the ICU this morning, his respiration rate was only going into the 30s. The ICU doctor was pleased with that and thought he showed REMARKABLE improvement overnight. The doctor gave orders to have Matthew's arterial line in his hand taken out and the femoral central line taken out, then he could be discharged to ICS (oncology unit)!!!!
He is doing so well right now that Dr. Barnette (his primary oncologist) said when he came by awhile ago that we could look at going home tomorrow if Matthew is doing as well as he is now!!
We are so grateful to Heavenly Father for blessing Matthew to get well so quickly.
Matthew, Kirk, and I came up here to ICS around 10:30 a.m. this morning. We've been working with Matthew to help him get his strength back. This illness just wiped him out. We had him sit up on the edge of the bed several times. I am gong to have him sit in the rocking chair here in the room in a few minutes. Just little things to get him going again. We have been getting used to the new oncology unit here on the 4th floor. It is really nice and very luxurious compared to the old unit on the 3rd floor. There is even internet access in every room. Matthew had fun playing a few online games a little while ago. Each room also has a DVD player, and in the bathroom a small shower area with a stool for the sick kids to sit on. Hygiene is an important part of getting well, so that is nice to have that now. Each room also has its own ventilation system so you know that your child is breathing the best air possible. Every health care worker or other employee wears a mask when they enter every room. Matthew is busy playing Playstation right now. He is feeling so well!!!
Thank you all so much for the prayers. Thank you Aunt Annette for staying with Matthew and I in the afternoon when Kirk drove home to get Lane. Also Annette thank you for the Yoda toy for Matthew and Anakin one for Lane and the Star Wars sticker book too. Matthew finally played with the sticker book today after he got those IVs out of his hands. Thank you Aunt Sandy too for visiting all that evening when Kirk had to run home. It was so nice to have someone to talk to while sitting there with Matthew.
Thank you Heather for letting our cancer mom friends know that Matthew needed prayers. Also Heather, thank you so much for the FROG you sent Matthew!! It arrived just as he was being transferred up to ICS. Having it sent from the PCMC gift shop was a perfect idea. Matthew named him Mr. Hopper. He will always remind us to Fully Rely On God. Thank you so much my friend. We thank you to all of our family and friends for your support and prayers.
It is Lane's birthday on the 18th. We all really want to be out of here by then for sure! He will be 10. Thank you Gpa and Gma Harris for taking him birthday shopping today. I am sure he had a good time. I am still waiting for them to call so Matthew and I can find out what he picked out with his birthday money.
Hopefully my next update will be from home.
Again, thank you everyone for your thoughts and prayers.
Katrina
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May 15, 2005, Sunday night 10:30 p.m.
Please keep Matthew in your prayers at this time. He was admitted to the intensive care unit (ICU) at PCMC Friday night. He was admitted for neutropenia (extremely low immune system--his ANC was 0), fever, and pneumonia. The antibiotic he was given caused septicemia (blood poisoning) which decreased his blood pressure to a critical level. So instead of being admitted to the oncology unit at PCMC, he was admitted to the ICU.
His blood pressure has been stabilized for the past 12 hours thankfully and he is doing better. The doctors are also keeping a close eye on his respirations because he has a pleural effusion now due to all the fluids he was given to flush the bacteria from his blood stream. His respiration rate has been jumping from 25 to 50 all day. (Normal respiration rate for his age is 18-25.) He may have to have a chest tube placed to drain the fluid.
Thank you so much. We appreciate your love and concern with all our hearts.
Katrina
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May 11, 2005, Wednesday
Matthew's 10th 8-week cycle began on Thursday, the 5th with a spinal at PCMC. He only has 2 more 8-week cycles to go!!!
He did an INCREDIBLE job with his spinal (intrathecal injection of the chemotherapeutic medication methotrexate). This was his 3rd time without sedation. We didn't put Emla on his back, but instead we had the doctor put Numby Stuff on the spot where he would do the injection. Numby Stuff is a little sticky pad of numbing ointment and is hooked up to a tiny electrical circuit. It is "grounded" on his forearm. We have used this before when Matthew needed to be reaccessed while in clinic at PCMC. It only takes 20 minutes for the area to become numb. The electrical pulses help to push the numbing ointment through the skin deeper than Emla. Also it is in the exact place the doctor wants it because he is the one who put it on. Well it worked very well!!!! Matthew did an BEAUTIFUL job holding still and he said he only felt a tiny, tiny little poke...shew! My brave, brave boy!!!
Friday he had a dentist appointment in Salt Lake so we stayed the night in Salt Lake with my sister Annette and her husband Sam. They've just been married a year. He is going to boot camp in San Antonio, Texas by May 27, so we wanted to visit with them and see him again. I took Lane out of school yesterday and today as well as Matthew. We stayed at their apartment Thursday night. It was good to visit with them. Uncle Sam cooked us kabobs which were very, very good. He's a great cook! We sure will miss him a lot when he goes to boot camp and then stays to do his paramedics training for another 4 months. Annette is going to try and move down there too. She's a physical therapist and she wants to do some traveling work to hopefully be closer to him. We'll miss them BOTH!!
On Monday Matthew had Cytoxan. (YUCK!) We don't like this chemo because it makes him sick and he throws up. I discussed with Dr. Barnette on Thursday that I wanted to try some other kind of antinausea medication because I didn't feel that what he has been getting -- Anzemet -- was working. Dr. B wanted to stay with the Anzemet for now but suggested adding Ativan as well. Ativan is like Valium and should make him relax and make his stomach relax too. Well it did make him relax and he did not throw up DURING the infusion, but a few hours later he did. I also got a second dose of Anzemet to give him the next day, but you can only give it every 24 hours! So I was going to have to wait until almost 1:00 p.m. to give it to him. Dr. B told me I could give him Ativan every 6 hours. It didn't work by itself though. He really needed an IV antinausea because he vomited 4 more times the next day. It is the worst because there is nothing to throw up. He would not eat because he was feeling so sick, and I was barely getting him to drink sips of Coke. He felt terrible up until I could finally give him the next dose of Anzemet by IV. After that, he drank more and more Coke, then 2 hours after the Anzemet he wanted to eat. He felt well enough to eat some cereal and this morning he was back to normal. He went to school today. What a trooper he is! I told him to be sure and fill up his water bottle at school and drink a lot of water because he needs to rehydrate himself. He said that he would. It is also a half day today so he'll be home by 1:00.
I am going to call Dr. B tomorrow -- Thursdays are his clinic day -- and talk to him about the Ativan/Anzemet. He told me to let him know how it went. We'll definitely get a different antinausea medication which can by given IV and also be given more often than every 24 hours for the next time he has Cytoxan. Every 8 hours would be good!
Well thanks for checking in on our little guy! We appreciate it.
Katrina
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April 26, 2005, Tuesday
Just a quick note to say that Matthew is feeling much, much better today. He did throw up again yesterday afternoon and just felt nauseous all day long. But today he woke up and said, "I felt GREAT today mom!" So he's back at school and feeling fine. I do believe it must have been a stomach bug. I'm glad it's gone now. He finished up the ara-c last night too. His next chemo will be May 5 for a spinal. (That starts cycle 10 out of 12! Yay!)
Katrina
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April 25, 2005, Monday
Matthew got the pukes last night at 1:30 a.m. --- we aren't positive that his being sick is related to the ara-c he's getting right now or whether he just has a stomach bug. Usually he feels better after I can give him his IV Anzemet (it's an antinausea) which I did this morning at 8:30. (He can only get it every 12 hours.) But he's still feeling cruddy and whenever I mention having a sip of water or Coke or a piece of toast, he screams, "NO MOM!!! I'LL PUKE!!" I hope he gets to feeling better soon.
Katrina
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April 23, 2005, Saturday
Matthew is doing really well. He went back to school this week and did great. So far, so good. He started week 6 of his chemo cycle on Thursday. He got Adriamycin Thurs. and Fri. I gave him Ara-c here at home this morning, and he'll get that every 12 hours until Monday night.
He and Lane each had a friend over Friday to spend the night. They all had a fun time. It was great weather here Friday and Saturday. They played in the creek for a long time. Before the snow melts in the mountains and fills it up with raging water, it is fun to hike in and have a good time.
I passed my medical transcription final!!! Yay!!! I've been taking an online course for 2 years now through a company called Career Step. It was excellent training and I am pleased with all that I have learned from them. However, I am glad to finally be finished. It took so long to finish because of Matthew's relapse. I began the course in April 2003, just after he finished his first 3 years of treatment. It feels great to be finished now and wonderful to have passed the final!! I will now type transcriptions for my dad who is a general surgeon. It will be good experience and I am looking forward to it.
Lane and Matthew have been invited to Camp Hobe. It is a summer camp for kids with cancer and their siblings. Matthew is very excited to go, but Lane absolutely does not want to go. Matthew is willing to go without Lane though. I guess we'll let him because he is very excited about it. Lane is shy in regard to things of this nature and Matthew is not; he's more outgoing. The camp will be for 5 days the first week of June and it will be overnight.
Thank you for checking in on Matthew!
Katrina
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April 5, 2005, Tuesday
We have decided to keep Matthew out of school for the next 2 weeks and keep him healthy. Core (state) tests are the last 2 weeks of April. I discussed everything with his teacher yesterday. She and I agreed that this would be best. I'm going to get everything from her as far as worksheets, things she is doing to help them practice for the test, etc tomorrow and work with him at home. We are focusing on keeping him healthy for awhile. Hopefully by then, the school will be aired out of all the germs it has built up!!
The PS2 game he chose was TY 2--Tasmanian Tiger Bush Rescue. He and Lane are having a blast playing it. He's been feeling really well, and he had his counts checked today to see if he'd be able to go to his dentist appointment tomorrow and to get his chemo on Thursday. They are really good.
Counts:
WBC-4.9
HCT-31.7
PLTS-523!!! The highest they've been in a LONG time!
ANC-3600
His counts are good to go to both appointments. I hope the dentist goes well. He's got a mouth full of bad teeth. We are only doing half this time.
He'll get IV methotrexate and vincristine at PCMC on Thursday.
Thanks for checking in on us! :-)
Katrina
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April 1, 2005, Friday
Matthew is doing much better now. He's watching his dad play a Lord of the Rings PS2 game.
Earlier today, he felt much different. His school called me on my cell phone (I was at Lane's school at the time listening to his book report) and they told me that Matthew was not feeling good at all. They said he was shivering really badly. Lane finished up his report, and I checked him out of school early (it was about 2:00 anyway). We went to get Matthew. He was lying on the bed in the little room they have for kids who don't feel well. The secretary said she took his temperature and it was only 97.0. I got him home and took his temp with my ear thermometer and it was 103.0! Oh my!!! Poor kid! At least he didn't sit in class until the end of school like on St. Patrick's Day!!
Lane went to a friend's house and I took Matthew to his pediatrician. (Temp at the pediatrician was 102.7--school's must be wrong evidently.) Everything looked fine and his lungs sounded clear. They did another Strep test because he had that 2 weeks ago, and sometimes it can hang on. It was negative. They did a flu test which was negative. They had to stick a swab stick up his nose for that one. NOT fun!!! I accessed his Port-A-Cath to check his counts, and the doctor also ordered a chest x-ray.
**Matthew was in NO mood to cooperate with Port accesses, Strep tests, flu tests, and chest x-rays today. He felt terrible and just wanted to go to sleep. I just have to bring something good into all this he is going through. He's been sick so much lately, and that along with all his chemo, is making him just mad at all the tests. I don't blame him one bit...no one does, but I said, "How about you get a cool reward for going along with all these tests?" and he said, "Okay. Uh...I don't know anything to get." I said, "What about a new Playstation 2 game and it can be for you and Lane?" He brightened up a tad and gave me the thumbs-up sign. He did cooperate much better after that, although he wasn't perfect. That's okay though!!**
His counts came back and showed a really high white count for him. His normal is about 1 to 3 and today it was 7.5 and he's been off prednisone for 5 days. Usually it lowers back to his normal when he ends prednisone. Also, prednisone can decrease one's immune system even though the white count is high. (Weird, I know...but I can see why he'd be sick...again.)
Counts:
WBC-7.5
HCT-29.1
PLTS-256
ANC-5600
His chest x-ray did show that he has pneumonia. He had it back in October too, so on comparison of the x-rays, today's looks worse. However, it is not so bad he has to be admitted. His vitals were good. His respirations are close to being high, but that is normal when you have a fever anyway. If his respirations stay high after his fever breaks, then I'm supposed to call the ER. We got some IV antibiotics (Rocephin) going in him, and we'll give that every 12 hours for 3 days, then go from there.
Now his fever has broke and it's down to 97.0 like I mentioned, and his respirations have decreased likewise. He's doing well now. However, Kirk and I are so TIRED of him getting sick all the time. He didn't catch hardly anything when he was in Kindergarten, and you think it would be worse then? True, that in Kindergarten he was only there a half day. So maybe being there a full day now has something to do with it. I asked the doctor if school has anything to do with him getting pneumonia. He said that if a child with a normal immune system breathed in the particles that caused his pneumonia, the child would most likely develop a cold out of it. So, because Matthew has a lowered immune system, those same particles cause more serious illnesses. Being in school where kids are most likely coughing could cause him to get these types of illnesses more frequently. I told him that I am really debating on whether to take him out of school for the rest of the school year (end May 27th) or at least a month. He said that it might be a good idea. I could schedule play dates and all that. I think it would be better to be home and be HEALTHY rather than go to school and get sick and feel cruddy all the time. That's no way to live. Kirk and I will have to talk it over and we'll see what happens. Any other families dealing with this situation? I'd love to hear what you are doing to keep your kids well. E-mail me or leave a note in the guestbook ok? We do wash our hands a LOT, and Matthew and Lane have Germ-X on their desks at school they use, plus they wash their hands during the day.
We will go back in to the clinic tomorrow morning for a followup.
Thanks for your prayers and for checking in on us.
Take care,
Katrina
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March 31, 2005, Thursday
There was another leukemia diagnosis in town a few weeks ago. I didn't want to say anything here until I had more information. Please keep this family in your prayers as they will be going through some very trying times. This family used to live near us about 5 years ago. When they moved to a different part of town, we lost track of them and have not seen them in a long time. They have 4 beautiful kids. The second child, an 11-year-old girl, was diagnosed with ALL. She has an older brother who is 12 and two younger sisters, ages 9 and 3. Lexi is considered high-risk ALL because of her age. The doctors told them that kids between about 8 and 12 who get ALL, are treated as high risk because that is when the body is growing and developing very quickly. So Lexi is getting VERY intense chemotherapy treatments compared to what Matthew got his first time through (when he was 2). They are making her quite sick. On a good note, her bone marrow responded well to the chemo, and she was in remission within the first week. We are all very happy about that.
In active treatment for leukemia here in Vernal are Matthew, Deegan, and now Lexi. Off treatment are Melanie, Will (a boy who also has Down syndrome), and another teen boy named Mason. So many kids in the past 3 or 4 years here. Makes ya wonder!!!
Deegan's mom, Mindy, and I are going to visit Lexi and her family Saturday. We bought all the kids something. At first we were just going to get Lexi something, but I just didn't feel right about it. I asked Mindy if she minded including all the kids because I remember how much Lane felt left out much of the time (and still does). She agreed and now I am in a much better frame of mind to go visiting them. I am excited even! I got the older brother a $15 gift card from Blockbuster. He can use it to rent his own videos or Playstation games. I got the younger sister who is 9 a Cranium Cadoo game. Mindy is getting Lexi some scrapbooking stuff and the 3-year-old something as well.
Chemo:
Matthew is doing well and is off prednisone now. SHEW! He was on a TOAST kick this time and made himself about 40 pieces of toast in one day! LOL Just kidding, but it was a lot of toast for one little kid in one day!!!! His moods settled down after the first day and he didn't throw anymore tantrums. I made him aware that he was on prednisone and that he really, really needed to try and control himself as much as possible. He did better thankfully.
We were out in Provo on Easter Sunday which was so nice. Gma Harris made a fabulous Easter dinner. We went to a park and rolled Easter eggs down the hill. The cousins all hunted plastic eggs that Aunt Sandy put together and had a blast. Aunt Heather came up from California with her kids (Uncle Kyle had to stay in California and work..rats), but it was fun visiting with her and our ONE niece and nephews. Then Monday, Matthew had vincristine at PCMC. We usually do that in Vernal, but since we were out there, we changed it to PCMC. Anyway, that went fine. We talked about the pain in his feet, but because his strength is still good despite the pain, they aren't going to lower the vincristine dose. The doctor did order a scrip for oxycodone for the pain because Tylenol doesn't cut it. I can give that like once a day but he probably won't need it that much we hope.
Thanks for your prayers and for checking in on us.
Take care,
Katrina
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March 25, 2005, Friday
Happy Easter from the Harrises!
We are all doing well and hope everyone has a blessed Easter.
Matthew's last chemo was Monday, the 21st for vincristine. We had that done here in Vernal. His ANC was 800. Still pretty good. He went to school Tuesday and Wednesday. The kids have spring break Thursday through Monday. He started prednisone on the 21st and takes it for 7 days. After one dose of it, he's a different kid. That's what I dislike about that med more than anything--that it changes his personality. He threw a major fit over his PS2 game, Tekken. He never does that. He loves going to his friend Kaiden's house too. We went there on Wednesday and he was so ornery. I hope Kaiden understands. Matthew wanted to leave after being there just an hour. The vincristine makes his feet hurt a lot too.
But these side effects we'll deal with and live with. No problem. So many children have MUCH worse. I feel for all kids dealing with any problems. I feel for their parents too.
Well take care and thanks for checking in on Matthew and us.
Katrina
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March 19, 2005, Saturday-10:00a.m.,
No more fever! Yea!!! He's doing much better today. Ibuprofen helped him be more comfortable and brought the fever down and now it is gone. He hasn't had any meds since 5:00a.m.
Katrina
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March 18, 2005, Friday
To make a long story short, yesterday didn't turn out as great as it started. Matthew's summary of the day: "The leprechaun didn't bring ME any good luck at all. No, none."
So here's the long story if you're up to reading...
He has Strep throat. Thankfully it was nothing more serious. His ANC is still high (it's 1800) after the Cytoxan he got on Monday so he's on oral antibiotics versus IV antibiotics if it had been lower.
But he sat in class for over an hour shivering and shaking and probably out of his mind with fever and pain. There was a substitute unfortunately. The regular teacher would have led Matthew by the hand to the office which is only 8 feet from his classroom! This substitute knows Matthew's situation and has subbed many times for his class. I don't know why she didn't take him to the office herself when she saw how upset he was getting. The first I knew of his condition was when he finally made it outside to the car after school (I always pick take/pick up the kids to school). He was taking an unusually long time I had the feeling that something was wrong. Just as I got out of the car to go find him, he came around the corner of the school to the pick-up area. I could tell he was crying. I went running to him and carried him to the car. He was burning up with fever. He cried the whole way home. His temp was 102.5!! (**HELLO!!??!** I was quite upset!**) He was so upset he couldn't tell me what was wrong or why he hadn't gone to the office and called me.
I got some Emla on his Port site and called PCMC. They told me to go to our local doctor for physical and CBC and who the on-call doctor would be. So I called his local doctor and told them I was on my way in with him. They got him right back to a room as soon as we walked in. After we got to the doctor, Matthew calmed down and was able to tell me what happened. (And by the time we got there, his temperature was 103.) He also told the nurse right away that he thought he might have "strek throat" because his throat was hurting. Bingo! Strep test was positive right away. SHEW!
Anyway...he said that after lunch he started feeling bad and that it got worse and worse. After the last recess of the day (which is 2:30-2:45) he suddenly felt terrible. He was shivering and shaking he said and burning up. He said that he told the substitute teacher he was feeling bad and that all she said was to lay his head down and he could do the sack puppet they were working on at home. (**I'm thinking..."what the...?!"**) He said that at the end of the day, he got his coat and backpack and was waiting by the door for all the other kids when he couldn't take it anymore because he was weak. He started to cry and the teacher told him to go the office. (All this time, I was right there in the car! IF only I'd known!) He then told me that he was so weak he couldn't make it to the office. He said he sat down in the hall by the pencil and paper machine and was crying. He said only 2 kids and one teacher asked if he was okay as they all filed out of the school to the buses. He told them, "uh-huh" instead of no...poor kid. That's why I think that he wasn't thinking straight! Fever can make you delirious. Unfortunately, he was out of the line of vision of the office secretary who knows us quite well. She said if only she had seen him, she would have called my cell phone right away. (I called her when we were at the doctor and asked if he had come to the office. More later on that.) I am assuming the substitute teacher didn't see him sitting in the hall like that, and if she did, that she assumed he had already called me and was sitting there waiting for me to come in and get him. HOWEVER...she SHOULD have double-checked with him if she did see him sitting there.
I called the school from my cell phone while at the doctor and talked to the secretary. She said that Matthew never came to the office. I told her everything that he had told me. She was very upset about it too. She watches out for him. She said that the substitute was already gone for the day or else she'd have me talk to her. I said that I'd rather her tell the principal what happened and then for him to get the teacher's side of the story, and have the principal call me back. So today, the principal called me and told me that the sub told Matthew if he needed to go to the office and call me, that he could. Instead of telling him to go to the office, she in a sense gave him a choice..if he needed to...he could go. She didn't TELL him to go to the office until the end of school when he was crying at the door. That's when he finally headed that way, but never made it. Poor guy! That is another reason I think the fever was making him delirious. He couldn't think straight to go to the office the first time she mentioned it.
I still haven't received an explanation on why he was in the hall and no one helped him. I am going to call back and find out if the teacher saw him sitting there or not. She just should have followed through with him and made sure he got there. It's not like she would be leaving the classroom for a long amount of time...the office is only 8 feet from his classroom! UGH. I am trying to quit stewing about this... The principal did say how sorry he was and that the teacher was very sorry too. He said he would keep a better eye out for Matthew and let all the teachers know to keep an eye out for him too.
I would have been upset if Lane had gone through that same scenario too. All kids should be taken to the office when they get sick in school...not asked if they want to go or not. With Matthew it is serious. A fever with him could mean an infection in his blood which could be life-threatening very quickly. I explained this to the principal and he just said again how sorry he was. I will be calling his regular teacher this weekend. She's been gone all week because her daughter had a baby.
One good thing about the whole ordeal yesterday was that my learning how to access his Port-A-Cath was put to its test. (See "Reasons" link above.) I brought all the stuff to access it with me to the doctor's office and told them I would be accessing it and showed them the stuff. They were pretty impressed. If I didn't know how, we'd have had to go up to the lab, and they would have called an ER nurse to come do it because the lab techs aren't trained to access Ports. Then the ER nurse would have messed up (we had too many bad experiences with them messing up) and had to stick him several times and Matthew would have been outofhismindwithangerpain and you name it for being stuck more than once when he's sick. The ER nurses just don't access Ports often enough to know what they are doing...much less on a KID who is SICK! So...Matthew and I were so GLAD we didn't have to go through that.
Hopefully he'll get better soon.
Thanks for checking on him.
Katrina
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March 15, 2005, Monday
Yesterday Matthew had Cytoxan here in Vernal. He got sick again with it. We've got to try something besides Anzemet next time he has Cytoxan. It's just not working anymore for him and it's so awful seeing him toss his cookies like this. He was sick yesterday after the chemo and today as well.
Katrina
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March 12, 2005, Saturday
We just got home from our first Make-A-Wish party. We've never been able to stay for one before. It was a fun Easter party. The Easter hunt was a blast. Lane didn't want to do it so he just watched Matthew run as fast as he could when they said "GO!" and pick up as many plastic eggs as he could in this huge field. I'd say there were probably 1,000 plastic eggs...or more!...in that field and when they said "GO!" that field was CLEARED of eggs in about 4 minutes it seemed! It was funny. They got to do crafts and they served pizza. We met another wish family from Vernal too that we'd never known about. Their daughter has cystic fibrosis.
We stayed for the party because Matthew had a spinal on Thursday and a dentist appointment on Friday. I took them both out of school. Matthew's spinal went really well. This was his 3rd time without any sedation. He did fabulous again but would have done better if the Child Life lady, Julie, had been there. She does such a good job with him. This started his 9th out of 12 cycles....counting down!
Katrina
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February 9, 2005, Wednesday
His ANC is 3200!!!! Yipee! Matthew was so excited!!! He’s obviously sick of being stuck at home for so long now. We were all very excited. He’ll get his IV methotrexate and vincristine at PCMC tomorrow. His monos were back to 25. So Dr. Archer’s assessment last week was right on target. That makes me feel good about the care the docs out here can give to our leukemia and cancer kids in this town.
Deegan is doing better now. I’m so glad. He’s such a sweet little guy and his family is just neat. I call his mom often and check up on them. She’s still getting used to all this. It takes a long time. Keep them in your prayers please and thank you for your thoughts and prayers for Matthew. We truly appreciate it.
Katrina
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February 3, 2005, Thursday
Matthew had his second vincristine dose today. Prednisone stopped this morning. I expected to see his ANC up to about 500 or higher now, so I was shocked when the CBC came back with a LOWER ANC than from Monday’s CBC. Today his ANC is 108 and Monday it was 236. I was confused by this, but then Dr. Archer pointed out that his monos are a whopping 65 and that means that his marrow is going into overdrive getting WBCs going. Next CBC, she expects the ANC will be higher. Matthew is also having a lot of hip and leg pain and she said that those are the areas of WBC production and correlates with his high monos. So we’ll just wait and see what his next CBC says and again…stay homebound. Matthew is really getting tired of that and it’s hard to keep him from getting too bored. His teacher had been bringing by all his work. He’s staying caught up in school but he’s missing out on a lot of time spent with friends.
Other than a low ANC, he’s doing great. Still…we are praying NO FEVER!!!!
Katrina
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January 31, 2005, Monday
Yea! His platelets came up to 75 from 31. SHEW!!! His ANC is still low, but up a little. It’s now 236 and his monos are 13. His last dose of IV antibiotics was Sunday. He’s doing really good and keeping himself busy with I SPY books. He’s now making up his OWN rhymes to EVERY picture in every book he has. WOW!!
Katrina
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January 27, 2005, Thursday
Well Matthew got vincristine today and started a 7-day course of prednisone. His counts are so low now. Have to stay homebound. I’ve been keeping him home anyway because I knew that Cytoxan last week would lower them. His platelets are low too today.
WBC-.4
HCT-34.2
PLTS-31*LOW!*
ANC-144*LOW!*
His monos are 4. He saw a new doctor at the pediatrician's office today. (There are 4 docs total there.) Dr. Archer is really nice and has done a lot of training in Colorado at a Children's Hospital there. I feel confident with her. Dr. Pollary was going over everything with her too. They both heard crackles in Matthew's lungs but a chest x-ray was negative for anything. Probably because there are no white blood cells to see. So if Matthew gets a fever, I have to take him straight in because it could be pneumonia. Hopefully he won’t! No fever! No fever!
Dr. Archer and Dr. Pollary wanted him to get another CBC on Monday just to check his platelets and make sure they’ve come up. Hopefully they will!
Katrina
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January 22, 2005, Saturday
We’re back home now. Cytoxan on Thursday. We were there forever because he needed up needing his port reaccessed today (that needle had been in a week) AND he ended up needing a blood transfusion today. His HCT was 26 and since he was getting Cytoxan, it would get lowered even more. They do like to transfuse blood when HCT is around 25, so that is close enough! (His ANC was still 600 and his PLTS were 97) Cytoxan takes about 2-1/2 hours total with all the fluids he has to have and a blood transfusion is 1-1/2 hours. Waiting for his skin to get numb to access his port again is 30 minutes. He had to have another dose of vancomycin which takes 1-1/2 hours because we are running it slower than the first time he got it. Plus the predmedication is 30 minutes. Yep…we were there ALL DAY. Matthew got to order lunch from the cafeteria. I called my sister Annette to see if she could take a lunch from work and come visit us and bring me something to eat. I just felt like I needed someone to talk to. So she did and it was great seeing her! She was glad to see that Matthew is feeling good. And she played a few game with him.
It’s been a long week and I’m glad that it’s over and Matthew is doing fine. He did vomit again with the Cytoxan. Poor kid. I hate that! He’ll continue the antibiotics for 10 days and he’ll get vincristine next week.
Please keep Deegan Harwood in your thoughts and prayers. This little boy from Vernal was just diagnosed with leukemia (ALL) on December 17, 2004. He’s 3-1/2 years old. He’s having a really tough time right now.
Thank you for everything.
Katrina
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January 19, 2005, Wednesday
I’m writing this update from Gma Harris’s house. Matthew’s culture on Monday grew out gram positive, which they said was a Staph-type bacteria from the skin. They called me Tuesday morning at home in Vernal with this news and said “we need to see him back here at PCMC as soon as possible.” They asked if he had a fever and was feeling okay and I said yes, so they said come on out right away. I got things arranged for Lane and arrived around 2:00 p.m.
The nurses got Fortaz going and did another culture and CBC. His ANC was still 600. Then they started Vancomycin which is a powerful antibiotic. They ran that for an hour. Right at the end of it, his face turned all red and his eyes too. His head was very itchy too. Nurse Pam said it was Red Man’s Syndrome and is caused by this specific antibiotic going in too fast. She immediately gave him IV Benadryl which conked him out pretty quick and also decreased the itching and redness. So now they instructed me to always premedicate him with Benadryl and Tylenol 30 minutes before giving him the Vancomycin. With this type of antibiotic a peak and trough have to be drawn from his blood (special blood work test). So they really wanted us to stay in the area and Dr. Barnette said that it would be okay for Matthew to get his Cytoxan on Thursday anyway. Soooooo… Matthew and I are staying at Gma’s until after the Cytoxan on Thursday. What a week!!!!! I’m just thankful that Matthew is okay and that we can treat this effectively with IV antibiotics at home. They want him on Fortaz AND Vancomycin right now. So with the premedication to go with that, we are giving him meds around the clock it seems. Both Fortaz and Vancomycin are given every 8 hours.
Thanks for your thoughts and prayers.
Katrina
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January 17, 2005, Monday
Big mess up today! Holy cow did I ever screw up. I guess you learn from mistakes and I was glad it was caught before he got his chemo.
To make a long story short, I told Dr. Yaish today all that went on over the weekend, but forgot to tell her that cultures had been started on Saturday. DUH!!! He said that anytime there’s a culture done then chemo needs to be discussed putting on hold…especially a chemo that lowers the counts. I didn’t know what his ANC turned out to be on Saturday since Home Health did the blood work, so Dr. Yaish called our hospital in Vernal to find out. And when he did, he found out a culture had been drawn as well. The culture was negative so far and his ANC was down to 600. He felt that a repeat culture should be done now and that the antibiotic Fortaz should be started as well. They said that Matthew could get his Cytoxan on Thursday, the 20th.
So it was a crazy day and I felt like I wasted a trip out there to PCMC…all that driving just to have his chemo be canceled. But then again, I was glad they knew more about what was going on with him and did the repeat cultures.
Katrina
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January 16, 2005, Sunday
He feels better today. No fever all morning, then in the evening he didn’t feel real well and his head hurt a little.
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January 15, 2005, Saturday
Matthew called me to come get him after a half day at school saying that he had a terrible headache. There was no fever. Today, however, he’s been running a low fever of about 100.6. The rules are that if he runs a low fever like that for over an hour, we have to call PCMC. So I did and talked to the on-call doctor. She was really nice about everything and said she would talk to Dr. Barnette too. She said it could be a spinal headache from the back poke he just had. She called back and said they wanted a CBC and cultures and to give one dose of Rocephin. They arranged for home health to come and get it. Since he had remained accessed from the spinal we didn’t have to worry about accessing his port. He had remained accessed because on Monday he is supposed to get Cytoxan at PCMC.
Home health brought his antibiotic and got the blood work. Matthew’s temp keeps going up and down..up to 101.5 at times. The docs said it was okay to give him Tylenol now but to check his temp before giving it.
Katrina
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January 14, 2005, Friday
Matthew got a spinal yesterday at PCMC. His 2nd one without sedation!!! I'm so very proud of him! So were all the nurses and doctors that were caring for him yesterday. Nurse Dan told him that Matthew is only the 6th kid he knows out of all the kids that have cancer who can do a spinal with no sedation. He said, “Matthew, you ROCK!”
He felt great all the way home. His counts are really good too. ANC is 1276 and PLTS 281.
Thanks for checking up on our kiddo!
Katrina
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February 9, 2005, Wednesday
His ANC is 3200!!!! Yipee! Matthew was so excited!!! He's obviously sick of being stuck at home for so long now. We were all very excited. He'll get his IV methotrexate and vincristine at PCMC tomorrow. His monos were back to 25. So Dr. Archer's assessment last week was right on target. That makes me feel good about the care the docs out here can give to our leukemia and cancer kids in this town.
Deegan is doing better now. I'm so glad. He's such a sweet little guy and his family is just neat. I call his mom often and check up on them. She's still getting used to all this. It takes a long time. Keep them in your prayers please and thank you for your thoughts and prayers for Matthew. We truly appreciate it.
Katrina
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February 3, 2005, Thursday
Matthew had his second vincristine dose today. Prednisone stopped this morning. I expected to see his ANC up to about 500 or higher now, so I was shocked when the CBC came back with a LOWER ANC than from Monday's CBC. Today his ANC is 108 and Monday it was 236. I was confused by this, but then Dr. Archer pointed out that his monos are a whopping 65 and that means that his marrow is going into overdrive getting WBCs going. Next CBC, she expects the ANC will be higher. Matthew is also having a lot of hip and leg pain and she said that those are the areas of WBC production and correlates with his high monos. So we'll just wait and see what his next CBC says and again…stay homebound. Matthew is really getting tired of that and it's hard to keep him from getting too bored. His teacher had been bringing by all his work. He's staying caught up in school but he's missing out on a lot of time spent with friends.
Other than a low ANC, he's doing great. Still…we are praying NO FEVER!!!!
Katrina
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January 31, 2005, Monday
Yea! His platelets came up to 75 from 31. SHEW!!! His ANC is still low, but up a little. It's now 236 and his monos are 13. His last dose of IV antibiotics was Sunday. He's doing really good and keeping himself busy with I SPY books. He's now making up his OWN rhymes to EVERY picture in every book he has. WOW!!
Katrina
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January 27, 2005, Thursday
Well Matthew got vincristine today and started a 7-day course of prednisone. His counts are so low now. Have to stay homebound. I've been keeping him home anyway because I knew that Cytoxan last week would lower them. His platelets are low too today.
WBC-.4
HCT-34.2
PLTS-31*LOW!*
ANC-144*LOW!*
His monos are 4. He saw a new doctor at the pediatrician's office today. (There are 4 docs total there.) Dr. Archer is really nice and has done a lot of training in Colorado at a Children's Hospital there. I feel confident with her. Dr. Pollary was going over everything with her too. They both heard crackles in Matthew's lungs but a chest x-ray was negative for anything. Probably because there are no white blood cells to see. So if Matthew gets a fever, I have to take him straight in because it could be pneumonia. Hopefully he won't! No fever! No fever!
Dr. Archer and Dr. Pollary wanted him to get another CBC on Monday just to check his platelets and make sure they've come up. Hopefully they will!
Katrina
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January 22, 2005, Saturday
We're back home now. Cytoxan on Thursday. We were there forever because he needed up needing his port reaccessed today (that needle had been in a week) AND he ended up needing a blood transfusion today. His HCT was 26 and since he was getting Cytoxan, it would get lowered even more. They do like to transfuse blood when HCT is around 25, so that is close enough! (His ANC was still 600 and his PLTS were 97) Cytoxan takes about 2-1/2 hours total with all the fluids he has to have and a blood transfusion is 1-1/2 hours. Waiting for his skin to get numb to access his port again is 30 minutes. He had to have another dose of vancomycin which takes 1-1/2 hours because we are running it slower than the first time he got it. Plus the predmedication is 30 minutes. Yep…we were there ALL DAY. Matthew got to order lunch from the cafeteria. I called my sister Annette to see if she could take a lunch from work and come visit us and bring me something to eat. I just felt like I needed someone to talk to. So she did and it was great seeing her! She was glad to see that Matthew is feeling good. And she played a few game with him.
It's been a long week and I'm glad that it's over and Matthew is doing fine. He did vomit again with the Cytoxan. Poor kid. I hate that! He'll continue the antibiotics for 10 days and he'll get vincristine next week.
Please keep Deegan Harwood in your thoughts and prayers. This little boy from Vernal was just diagnosed with leukemia (ALL) on December 17, 2004. He's 3-1/2 years old. He's having a really tough time right now.
Thank you for everything.
Katrina
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January 19, 2005, Wednesday
I'm writing this update from Gma Harris's house. Matthew's culture on Monday grew out Gram positive, which they said was a type-type bacteria from the skin. They called me Tuesday morning at home in Vernal with this news and said "we need to see him back here at PCMC as soon as possible." They asked if he had a fever and was feeling okay and I said yes, so they said come on out right away. I got things arranged for Lane and arrived around 2:00 p.m.
The nurses got Fortaz going and did another culture and CBC. His ANC was still 600. Then they started Vancomycin which is a powerful antibiotic. They ran that for an hour. Right at the end of it, his face turned all red and his eyes too. His head was very itchy too. Nurse Pam said it was Red Man's Syndrome and is caused by this specific antibiotic going in too fast. She immediately gave him IV Benadryl which conked him out pretty quick and also decreased the itching and redness. So now they instructed me to always premedicate him with Benadryl and Tylenol 30 minutes before giving him the Vancomycin. With this type of antibiotic a peak and trough have to be drawn from his blood (special blood work test). So they really wanted us to stay in the area and Dr. Barnette said that it would be okay for Matthew to get his Cytoxan on Thursday anyway. Soooooo… Matthew and I are staying at Gma's until after the Cytoxan on Thursday. What a week!!!!! I'm just thankful that Matthew is okay and that we can treat this effectively with IV antibiotics at home. They want him on Fortaz AND Vancomycin right now. So with the premedication to go with that, we are giving him meds around the clock it seems. Both Fortaz and Vancomycin are given every 8 hours.
Thanks for your thoughts and prayers.
Katrina
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January 17, 2005, Monday
Big mess up today! Holy cow did I ever screw up. I guess you learn from mistakes and I was glad it was caught before he got his chemo.
To make a long story short, I told Dr. Yaish today all that went on over the weekend, but forgot to tell her that cultures had been started on Saturday. DUH!!! He said that anytime there's a culture done then chemo needs to be discussed putting on hold…especially a chemo that lowers the counts. I didn't know what his ANC turned out to be on Saturday since Home Health did the blood work, so Dr. Yaish called our hospital in Vernal to find out. And when he did, he found out a culture had been drawn as well. The culture was negative so far and his ANC was down to 600. He felt that a repeat culture should be done now and that the antibiotic Fortaz should be started as well. They said that Matthew could get his Cytoxan on Thursday, the 20th.
So it was a crazy day and I felt like I wasted a trip out there to PCMC…all that driving just to have his chemo be canceled. But then again, I was glad they knew more about what was going on with him and did the repeat cultures.
Katrina
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January 16, 2005, Sunday
He feels better today. No fever all morning, then in the evening he didn't feel real well and his head hurt a little.
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January 15, 2005, Saturday
Matthew called me to come get him after a half day at school saying that he had a terrible headache. There was no fever. Today, however, he's been running a low fever of about 100.6. The rules are that if he runs a low fever like that for over an hour, we have to call PCMC. So I did and talked to the on-call doctor. She was really nice about everything and said she would talk to Dr. Barnette too. She said it could be a spinal headache from the back poke he just had. She called back and said they wanted a CBC and cultures and to give one dose of Rocephin. They arranged for home health to come and get it. Since he had remained accessed from the spinal we didn't have to worry about accessing his port. He had remained accessed because on Monday he is supposed to get Cytoxan at PCMC.
Home health brought his antibiotic and got the blood work. Matthew's temp keeps going up and down..up to 101.5 at times. The docs said it was okay to give him Tylenol now but to check his temp before giving it.
Katrina
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January 14, 2005, Friday
Matthew got a spinal yesterday at PCMC. His 2nd one without sedation!!! I'm so very proud of him! So were all the nurses and doctors that were caring for him yesterday. Nurse Dan told him that Matthew is only the 6th kid he knows out of all the kids that have cancer who can do a spinal with no sedation. He said, "Matthew, you ROCK!"
He felt great all the way home. His counts are really good too. ANC is 1276 and PLTS 281.
Thanks for checking up on our kiddo!
Katrina