Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, June 24, 2011

First neutropenic stay June 22-26th, 2011

PICS: My favorite thing about the hospital? Flushing the toilet. I also gave the kids bed rides, talked to my daddy on skype, and tried to play hide n seek, which mommy thought was especially funny since I was hooked up to my IV. The day before I went to the hospital I was at Camp Hobe, that's me swinging with Merin there.







(written by mom June 23rd...We had to go to the hospital Wednesday the 22nd because Tyson was fevering and had a bad infection in his knee. It was the day after we got home from Camp Hobe in Utah which is a camp for kids with cancer and their siblings-the kids had a great time!!! We are so thankful there are so many people willing to volunteer and put that thing together, it was AWESOME and a great way for cancer kids and their siblings to forget about cancer for a while and have something fun to look forward to. When we got to the hospital wednesday his ANC was 600, but quickly dropped to zero (under 100) and stayed there for a few days...they put him on vancoymycin(which requires 2 pokies) and zosyn to get rid of the infection and put mupirocin on his knee...they tried to do a culture of the knee infection but I guess they didn't get any good results...we got to go home Sunday even though it was still zero and continue our antibiotic IV (zosyn) at home with the home health nurse who we love!! So here is what I wrote while we were in the hospital, warning I had a really bad attitude about being there.) ::
facebook status: "Here come the pokies, really wishing I had driven to Primary Childrens :("

Then someone asked if they were having troubles with his port again and I replied: "no troubles with the port this time thank goodness! They just do things differently here and they are still a little lost in the new hospital I guess cause his dinner tray never showed up last night even though I ordered it to come at 6:00. He had cookies and milk for dinner, and ate the rest of the cookie and warm milk this morning cause it took over an hour for his frosted flakes to come up...the doctor who saw him took him off his scheduled chemo pill, I had them call this morning to see if that was right and it wasn't...They lost his lunch and had to make a new one. They have to draw blood twice out of his arm today which I suspect they wouldn't do at PCMC...AND I'm still fuming that the lab threw out his blood Friday just because the nurse didn't label it right~even though her name and cell number were on a sticky note on the bag~they didn't call her and tell her to come label it right, they just threw it out cause that's POLICY!! So he had to get his port accessed twice friday just to get a blood count...just adding that to the list of reasons I hate this place...and LOVE Primary Children's"
update...we are still here at PMC. I know I have mentioned how much I hate it here, and that isn't just the fact that I don't think these guys follow a standard of excellence... just kind of a standard of doing their jobs and going home (I still have a bad taste in my mouth from our experience in the ER, can you tell?) ...it also has a lot to do with the fact that I hate that Tyson has to go through this, that he has to get pokies even though he has a port in to prevent pokies, that my other kids now not only have to be without their dad, but go to bed without their mommy some nights too and that breaks my heart. So I guess I've spent this hospital stay feeling sorry for us and just wishing we could go home instead of trying to make the best of things. I'm slowly working my way out of that mood. Things are looking pretty good I think...his temp tonight in his armpit was 99.1 so I'm crossing my fingers that they aren't counting that as fever. The doc swabbed the pus on his knee and ever since he did that it has improved a ton! I guess he relieved some pressure when he cut it open or something, he said it looks like there might have been a tiny sliver in there. His nurses have been good so I don't completely hate this place...but still mostly hate it. I'm learning that when I come here I just have to be outspoken about things..like when the nurse was flushing his line and was about to leave and I said, 'so you don't need to do heparin?' and she said, 'Yes, I do thank you for reminding me!' Yesterday I should have questioned the doc more about his medicine and required him to check up on it with his oncologist at primary children's right then. And I have learned that you have to badger the food people or your food never shows up...so if for some unfortunate reason I do end up here again I just know I have to watch and question and speak up and it's ok, not ideal but we'll work with it. :) He had a good nurse today(other than the heparin thing), she worked with him on his level and got him to interact with her a little (he usually completely ignores all medical personnell)...he was in a pretty good mood, except when he was getting pokies. Missing my other kiddies :'( thanks for the kind thoughts and prayers.
UPDATE FRIDAY, JUNE 24th. YAY!
The charge nurse came in today and I was able to tell her all of the reasons I am unhappy with this place. She wrote down what I said, and I feel much better getting that off my chest. I am hopeful, one of the things she said to me was that they are aware that they do things differently than Primary Children's and if there is something they can do to improve, or something I like about PCMC that I would like them to do then I should let her know. Of course the main difference I have seen is that Primary Childrens is so thorough and so interested in making it as positive an experience for the child as possible (with as few pokies as possible) that I'm not sure PMC has the means to measure up...but it's nice that they would like to try. :)
Saturday night, June 25th: I sang "happy family" over and over again to Merin tonight over the phone and it broke my heart to hear her crying for her mama on the other end. I was so happy earlier today when I got to see each of my kids as they visited, some with Grandma Porter, and some with Grandma Jerri. It was so good to hug them and talk to them and watch them play with Tyson and ride his bed as he played with the controls (except when Emily got her leg temporarily smashed by the lowering bed). Brenna stayed and hung out for the day and it was fun to hear
about her Camp Hobe experiences. There are two days left of this phase of treatment, called Consolidation and it is such a mild phase of treatment that it was kind of like having a break from cancer. As the steroids of Induction slowly wore off and the effects of the vincristine too since he only had to have it once at the beginning of this phase, we got to see our real Tyson back. His ANC (immunity fighting) numbers were way up and he was interested in playing with cousins again and gradually gaining strength back in his legs, he hardly ever has to crawl (use his hands to get up them) up the stairs and can run and jump on the tramp and play outside and has LOVED swinging on the swings. He has even started to interact with nurses a tiny bit which is huge since he has pretty much ignored EVERYONE except me since day one of his diagnosis. His way of coping with the stress of it all I guess was to shut it all out, something I have recently read about on other cancer kid blogs so isn't unique to him. He still has his moments of crying for a long time over a little thing, and still hugs me tight when we have to walk into a doctors office or hospital, but he has been much happier, healthier, and stronger. I've been reading blogs all evening with tears streaming down my face trying to cope with the sudden shove back into 'cancer' that this recent hospital stay has been. It is comforting to know that other families are going through the same things and some much worse and that they are making it through the pain with positive attitudes. One mom said she was proud to walk around with her bald little cancer fighter and know that the child is one strong and special spirit to have to face this kind of trial. I hope that one day I can have that perspective as right now I mostly feel bad that he has to go through this and wish it wasn't real. I guess that's why the pokies bother me so much because it makes it evident that this is real and that there isn't anything I can do to take away the pain he has to go through. When we got home from Camp Hobe Tuesday night and the kids were happy to just play and be home I realized how much he LOVES to be home and was glad he has a safe happy place to be and to look forward to. We will be SO happy to be home whenever that time actually comes. And in 80ish days we will all be able to be home, I talked to Brady tonight on skype for a couple of hours about how that might be for him to come home in the middle of the worst phase of treatment that A.L.L. kids have, Delayed Intensification. It is strange to plan for what will be such a happy time for our family to be all together again while at the same time dealing with something so hard and stressful. We have no idea right now what to expect and that in itself is hard. When I was talking to the charge nurse and she found out my hubby was in Iraq, her jaw hit the floor and she said how are you doing this? And I shrugged my shoulders and said you just do, what choice do I have? I almost burst into tears right then and there but I held it back and saved it for later. I felt so alone here like I didn't have a voice or any say in what was going on and hated Portneuf Medical Center more and more by the hour. At Primary Children's you are in a ward of the hospital that primarily treats cancer patients so when I am there I feel more safe and like Tyson gets better care because the people who are treating him ALWAYS treat cancer patients and have the expertise and understanding that we need. Talking to the charge nurse and having someone up here actually understand what we were going through was a great comfort and helped me feel better about being here. Tyson had a great time today playing with the toys his aunt Lissa brought and playing with his brother and sisters. He's been having bad dreams on and off ever since he
fell asleep at like 6pm so I hope he sleeps ok the rest of the night. And I had better go shower and get to bed myself so I can handle another FUN day at PMC. His ANC was at zero today so no hopes of it improving soon. :( We'll see what tomorrow brings. Life is still good, really hard, but good...and I need to go read some scriptures and feel better. Good Night....Yikes! as I proof read this I realized it might trigger some 'I need to do something' feelings, it would in me if I was reading it. Rest Assured that you can't take this from us, that it is a part of life and I am sharing it with you not to make you feel sorry for us or feel bad, just letting you see a little bit of the inside view of fighting cancer. Reading other's blogs and things about it has helped me, so maybe someday this will help someone else, who knows. And I really needed a place to write all of this down..so here it is. :) Good Night for real.

Friday, June 3, 2011

Medicine Regimen List


Pics: at the PCMC clinic June 14th, just a hair under my diagnosis weight now, playing with my cousins, one of them broke both arms, riding the lawnmower with grandpa, and 'fixing' the trike. The first half of June was really fun!
(Written on facebook June 3, 2011)~~I have had people ask me about the meds he is taking, it's complicated and hard to explain so I'm going to write it down here in case you are interested in
a more detailed idea of what he took, is taking, and will be taking. His
treatment lasts a little over three years total, no matter what. I don't have the treatment details of the last phase yet, which is called maintenance, but I have heard that it is chemo once a month, steroids sometimes, and spinal chemo every three months.
Phase one (Induction)
This phase is designed to put the leukemia in remission, which means no leukemia is detectable in the body.
He received a blood transfusion the night we got there, another one while we were there, and also platelets to get ready for surgery
29 days long
Days 1-28: dexamethasone pills by mouth twice a day
Day 1: cytarabine in the spine and vincristine IV, surgically inserted power port for future IV's, bone marrow aspirate
Day 4: Pegaspargase IV (released from the hospital this day)
Day 8: methotrexate in the spine, vincristine IV (outpatient oncology clinic at PCMC), he had to get platelets this day too
Day 15: vincristine IV (outpatient oncology clinic at PCMC)
Day 22: vincristine IV (outpatient oncology clinic at PCMC)
Day 29: methotrexate in spine (outpatient oncology clinic at PCMC)
The main side effects he experienced during this phase were increased appetite (big time!! and didn't want anything sweet), woke up in the night to eat, irritated easily (like when I breathed on him), long crying spells over little things, ignored everyone and didn't want to play, pain in the tummy and legs, didn't want to walk much, and has to use his hands to go up stairs-I think that had to do with muscle weakness, and leg pain. He lost a little hair toward the end of the month, but hasn't lost much since. He also had a really big tummy and a really round face from the steroids.
Phase 2 (Consolidation)
28 days long
Days 1-28: Mercaptopurine (6MP) pill by mouth once a day
Day 1: Methotrexate in spine, vincristine IV (outpatient oncology clinic at PCMC)
Day 8: Methotrexate in spine (outpatient oncology clinic at PCMC)
Day 15: Methotrexate in spine (outpatient oncology clinic at PCMC)
He is just starting this phase, he is much happier and his appetite has tapered off considerably. He wants to play a lot more, and he is still a little chubby from weight gain, but the roids puffiness is gone. He still has to 'crawl' up stairs and his legs are wobbly and weak which I think is still from the vincristine and dexamethasone.
~Consolidation Update~ Ty had to get a blood transfusion on day 15, (June 14) and his ANC dropped to 100 that day (0.1) which was a big surprise to me because it had been so high up until then. It stayed low for several more weeks and we had two five day stays at the local hospital for fever/infection/neutropenia. He got another blood transfusion and platelets on July 3rd. We had to postpone the start of the next phase for three weeks because his ANC had to be at least 750 to go. It finally reached 1800 on July 18th so we started Phase 3 July 19th. The side effects were pretty mild during this phase. He preferred blander food, ate a lot of cereal, and said, 'what's that smell' a lot, so I think he was feeling a bit nauseous. His hair grew a little bit. He was much happier, stronger, and more energetic than he was during Induction.
Phase 3 (Interim Maintenance I)
8 weeks long (July and August I think)
Days 1, 11, 21, 31, and 41: methotrexate by IV and Vincristine by IV
Day 31: methotrexate in the spine too
Phase 4 (Delayed Intensification) This one looks nasty!!
8 weeks long (September and October I think)
Days 1-7, and 15-21: dexamethasone pills by mouth twice a day :(
Days 1, 8, and 15: Vincristine IV and Doxorubicin (I've heard this one is nasty..mouth sores etc and he'll probably loose the rest of his hair during this time)
Day 4: pegaspargase IV
Days 1 and 29: methotrexate in the spine
Days 29-32 and 36-39: cytarabine IV
Days 29-42: Thioguanine pill by mouth
Day 29: cyclophosphamide IV
Phase 5 (Interim Maintenance II)
8 weeks long (November and December?)
Days 1, 11, 21, 31, 41: methotrexate IV and vincristine IV
Days 1 and 31: methotrexate in the spine
After this he starts maintenance phase and I don't have details about this one yet and won't until he finishes all of this because he is in a clinical trial so how he responds to all of this helps determine what his treatment will be during maintenance.