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

Thursday, March 29, 2012

Broken Foot???

 Steroid lasagna!  A friend brought us a lasagna right after Ty was diagnosed and on steroids, it hit the spot in a major way for him with the crazy appetite and cravings you have while on steroids.  In fact I had to make a few more lasagnas that month but they never were quite as good as that first one.  She brought us another one recently and we saved it in the freezer for his next round of steroids.  Thank you!  It hit the spot again and was very thoughtful of you! : ) He has created a couple of new funny cravings with this round including hot dog without the dog (hot dog bun with ketchup only) and hamburger without the hamburger ( top only of an arctic circle cheeseburger)  We discovered Sunday night on the way home from Utah that only the top of an Arctic Circle hamburger (ketchup/mayo/lettuce) would do.  He gagged when he tried to eat the one we bought him from Wendy's and decided he wasn't hungry enough to try to choke it down. 
Aside from the steroids Ty is feeling pretty good.  He is still off all oral chemo. So the only chemo he has had in the past 5 weeks is IV vincristine.
 He had his last dose of steroids on Sunday so this week he has even attempted to do jobs, play outside, and lots of other 'normal' kid stuff.  The only meds he is on right now is his Miralax and Colace (Lightning Mcqueen pills, they are red and white striped).  Those combined have helped him immensley in the pooing arena.  That and his incentive to sit on the pot and go every day has pretty much solved his issue.  He says it doesn't hurt anymore and is going every day...and is the proud owner of a new DSiXL.
Yesterday he and his siblings were jumping off the couch onto a pile of pillows.  Ty missed the pillows and says he landed 'criss cross applesauce'.  It hurt a lot and he wouldn't walk on his foot and wanted to go to the doctor.  We've dealt with a broken foot before so I knew they couldn't do much for it even if it was broken, but since he is also dealing with the 'c' word which can cause weakened bones, I thought we should have it checked out.  I told him if he still couldn't walk on it the next day we would go get a picture of it...and here we are...luckily Dr. McInturff had an opening this morning.
 So here is his giant boot, the doc thought he saw a break in one of the bones but then when he zoomed in on it it didn't look broken.  He still fitted him with a boot anyway cause he said it could be the cartilage which doesn't show up on the xray and he could tell it was hurting him a lot.  Ty was VERY mad that he had to wear a boot cause it was hurting his foot...until I told him today was the day to go get the DS that dad had promised cause he did so well with his hemorrhoid problems. 
So DS in hand he has a boot on his foot and a smile on his face.  He still won't walk on it, has tried a couple of times and it hurts too much, but I'm sure the pain will gradually go away and he will be able to walk on it.  We recheck it next week.  He also gets a CBC next Tuesday to see if his ANC is high enough to go back on chemo pills.  And we should find out some time next week the result of his enzyme deficiency test to see if his body is processing the 6mp correctly.  For now, enjoying the chemo free week!

Tuesday, March 20, 2012

Clinic today...still off oral chemo

Horsey Doctor today.

 We brought Emily and Merin with us so Mom stayed outside with them. (no children are allowed in the oncology clinic other than patients...too many neutropenic kids)  This is them looking through the window at dad and Ty inside the clinic.  You can see them in the pic below if you look really close.  Ty is sitting at the table and Brady is back a little.

 I took Merin and Emily to the playroom for a while, they thought the giant dollhouse was pretty cool.  They made some crafts too.  Brady kept me updated via phone while he and Ty played DS.  Ty said 'ugh, I died' several times playing super mario bros. 
He has a weird rash around his eye, I'm glad it was still there today so the doc could see it.  Brady told her all about his pooping woes (he still holds it in for as long as possible which sometimes lasts a couple of days, until his little body literally forces it out) and when they tried to discuss with him that he needs to go potty every day, that didn't go over very well I guess.  She suggested having him sit on the pot 10-20 minutes a day to see if maybe he will go if he knows he has to sit there.  She doesn't know how stubborn he is : ).  Brady told him if he will do that and go potty every day he will buy him a DSXL. (I'm thinking as he is telling me this 'wow, that is a big present for pooping')  Tyson took Brady's face in his hands and said very seriously with tears in his eyes, "Dad, I don't think that is very fair."  So we are to continue the mirilax and add a stool softener.  The doc suspects that internal hemorrhoids are the culprits of causing him so much pain.  She said regular soft stools will help.
So ANC is STILL 600.  That means we keep him off oral chemo for another 2 weeks.  He got his IV Vincristine chemo today and we start him back on his five day round of dexamethasone (insert sarcastic fist pump yeeehaaaaa).  She also took him off of his Septra, she said it sometimes can cause low counts as well, and it may be the cause of the weird rash.  She said if they decide to keep him off of the Septra (Septra is the antibiotic he takes every Mon and Tues) they will substitute it for a different IV medicine that he will get once a month when he comes to clinic.  She is also hoping that his lips will improve as his counts improve...makes sense cause they always seem to suffer when his counts are low even though that doesn't really happen to the other kids that I know of. 
They are also having him tested to see if his body doesn't break down the 6mp right to see if that is partially the cause of low counts for so long.   That way they will know which chemo doses they need to reduce.  Apparently about 1 in 100 kids have the TPMT enzyme deficiency that they are testing for, it's a test they have to send to California so we will know the results in about 2 weeks.
Wiped out!  He was super grouchy and anxious this morning on the way to the doctor, I'm starting to wonder if only going once a month increases his anxiety cause the visits are so far apart.  HCT 33.5, WBC 3.0, RBC 3.94, PLTS 236.  Weight 16.4kg...that's 36lbs!  He is almost back up to his diagnosis day weight which was 16.9kg or 37lbs. : )  Thank You for dinner!!  We are so spoiled and doing great!  Thank you Thank you for the concern, prayers, rides for kids, and all of the other things you do.  We have a lasagna in the freezer from a friend, it has been waiting anxiously for Ty's steroid days...I'm sure we'll be pulling it out in a couple of days when his cravings intensify.  Thank You!

Wednesday, March 14, 2012


 Twin baldies...I cut all of Brady's hair off the other day and as soon as Ty saw him he wanted his head shaved too. 
Ty likes having a bald head.  He could feel the spikeys today on his head and asked me to cut it again. : )  He had his CBC yesterday so we could see if it was time to put him back on his chemo pills.  The answer is nope.  WBC 2.6, ANC 600, PLTS 251, HCT 30.6, HGB 10.9.  So everything has improved a little, but his ANC is barely above what it was last week.  We were surprised cause he hasn't had any chemo now for three weeks.  He will go a whole month without chemo by the time we head down for his appointment next week.  Then he will get vincristine again and start on dex again, but I guess they want his ANC to be 1000 before they start him back up on half dose of the daily chemo pills 6mp and the weekly MTX pills.  I don't think it is really the best case scenario for him to be off chemo for so long, but since he has to be we will enjoy the break!  His onc told us he has the best chances if he can take at least 95% of the pills he is supposed to take, she was telling us that so we would be vigilant in getting him his pills and not missing days, but it does make me wonder what being off them for a full month will do.  Not worried though, whatever happens happens and we can only do what we can do and leave the rest to Higher powers.  I'm betting that with his ANC so low for so long that just means the chemo is still doing its job even though he's not currently taking it.  He is still holding it in as long as possible cause it hurts to poop, and his lips are still giving him a little trouble, but other than that he is doing great!  Life is good! : )

Thursday, March 8, 2012

Little Green Apples the Book...READ IT!!

 Ty's lips yesterday...the last two big sores are almost better...
And Ty's lips today!  Yay!  They are back to normal.  He is feeling pretty good now, his last dose of antibiotics was Wednesday morning.  The diarrhea is already going away and the painful pooping woes are starting to come back. : (  Hopefully we can stay on top of it with mirilax.  ANC 500, PLTS 219, HCT 28.9.  So he is improving and with no chemo for the next few days he should be feeling normal for a while.  Hoping his bowels can resolve whatevers going on soon but other than that it is great to have a little break.  He gets a CBC on Tuesday to see if his ANC is high enough to start back up on half dose of his chemo pills.  His next PCMC appointment is in about two weeks.  Hopefully they can get his doses figured out so his counts don't tank like that again, but I'm not holding my breath.  It's okay though!  Life is good and he and we have been so blessed and have received more help and attention than we deserve for sure!
This last hospital stay reminded me that I've been wanting to read a book for a while now that a couple of people mentioned to me a few months ago.  It is called Little Green Apples by Jeanne Isom.  I found it on ebay and finally read it yesterday and let me tell you, it certainly helped me put things into perspective and helped me find my balance again.  A sweet little girl from Utah recently finished her treatment for ALL and a few days later found out she had relapsed and now needs a bone marrow transplant to survive.  Ever since we heard that terrible news my head has been spinning with worry that I couldn't shake.  This book has helped me find my center again and trust in greater powers than I or even the doctors have.  If Ty is to be cured he is to be cured and if he isn't that isn't up to me or the doctors and so I need not worry about the future and what might happen.  One of Ty's nurses Marc at PMC is the husband of Jeanne Isom and the father of the boy that the book is about which is what reminded me about the book.  Marc is a gentle, quiet, kind nurse and you can tell he cares, I love it when Ty has him.  If you would like to borrow my book I would LOVE to lend it to you, it is an incredible story that makes Tyson's battle look like a walk in the park...I'm really thankful Mrs. Isom was willing to share her son's story.

Tuesday, March 6, 2012

Still off Chemo

Monday the weather was awesome!  We took advantage of it and went to Brooklyn's Playground again.  Ty wanted to ride his bike there so when we got close we got his bike out of the truck and let him ride the rest of the way.  I guess it is that time of year right now cause it seemed like everybody at the playground was coughing...including my kids.  Funny how much more I notice stuff like that now.  I chased the kids around with hand sanitizer of course.  We completely wore Tyson out, he fell asleep at his 1:00 doctor appointment, but not before the doctor got him to giggle a little.  It's pretty rare for a nurse or doctor to get a response out of him, Dr. McInturff is pretty good at it.  The last of the sores on Ty's lips are peeling off right now.  I think he expressed his concern about that to the other docs after we left cause another Doc stopped Michelle (Ty's home health nurse) and had her bring us a urinal so we could measure his liquids.  Ty of course still used the toilet a couple of times before we could catch him and make him go in the urinal...but it did its job of having us pay attention and make sure he isn't getting dehydrated.  I know, I give way too many details...but I mention it partly because I am impressed at the amount of attention Ty gets, sometimes you feel pushed along by busy doctors and so it is nice to know they care for him and that they are paying attention.

His newfound favorite thing to do is climb up brady.  See his funny smile, he can't smile all the way cause of his lips.  His counts are still dangerously low, but he is feeling much better, and I think the mouth/lip sores are finally going away.  For my records:  ANC 315, PLTS 165 (normal yay!), WBC 2.1, HCT 26.7 (low, but up a little).  So we stay on antibiotics and get another CBC on Wednesday.  I talked to his nurse at PCMC yesterday and she said he probably won't start back up on chemo until his next appointment in 2 weeks so that will make a whole month off his daily chemo pills!  I guess his ANC has to be 1000 before they will start him back up.

Sunday, March 4, 2012

Good to be Home

Ty is feeling much better.  He is a different person at home!  He has had a lot of fun with the kids and still gets tired but has played a lot more yesterday and today than he has in a couple of weeks. His favorite nurse Michelle has been over to give his antibiotics three times a day.  We love her, she has kept us sane through all of these hospital stays and stuff.  He gets a CBC tomorrow and then has a follow up appointment at the doctor's office so we will know then if he gets to stop antibiotics and start back up on chemo.  I am doubting his counts will be high enough by then but he has surprised me before. 
His bum is still sore but better, he still has diahrrea but it is much easier to clean up and manage at home.  Sorry for the fuzzy pic, it's hard to get a good pic when they are moving so much : )  I'll post an update after we go to the doc.  Thank you for the prayers, dinners, and thank you for caring for our other kids when we can't. 

Friday, March 2, 2012

Going Home!

 Ty is finally showing some improvement in his blood counts... WBC 1.2 (normal is 4-11 so not good, but we'll take any improvement, RBC 3.18, HCT 26.3 (up a little), Platelets 107 (up a little), ANC 84 which rounds up to 100.  So the doc called his oncologist to see if we could go home and she said those aren't the counts she wants to see, but we can go home if we go on IV antibiotics every 8 hours.  Probably until his ANC is over 500, but we will see.
His bum still hurts, but we can manage that just as well from home as we do here, probably better.  So excited to get home!  We will have to be super careful till his counts are up of course, but what's new right?  Yay!  As soon as the doc said that I packed everything up and got him dressed.
Now we wait for all the orders to go through, if they can get things arranged with the pharmacy and home health we will be able to go home tonight, if not we will go in the morning.  Of course we are counting on all of that to get arranged cause we don't want to be here tonight! yahooooooooo

Thursday, March 1, 2012

No Blasts

NO BLASTS! :)  The abnormal lymphocytes had to do with a virus yay!

Hospital day 4

 Ty is feeling a little better today. I hope you are used to TMI by now...just keepin it real.  The antibiotics have made it so he can't hold it in so he pooped a total of 8 times yesterday and last night.  Cleaning that up is heinous cause it is too painful to wipe so we just hold him under the sink faucet until he is all washed off.  They have a bidet sp? but the water is freezing cold and it comes out so fast is splashes everywhere when it hits the target...he wasn't too fond of that method and neither was I with poopy water splashing on me.  After throwing away 6 underwears Brady finally convinced him to wear a pull-up last night.
He is actually wanting to play a little today for the first time in two weeks.  In the pic above he is playing hide and seek. : )  It was pretty hard to find him until he popped out of his blanket...
 It has been a lot of fun to get him to smile today!  We haven't seen many of those lately. 
I threw the tiger at him and he 'lassoed' it and the elephant a few times.  Right now I'm waiting for the doc to come back and tell me what the lab meant by 'abnormal lymphocytes'.  He said usually that means mono, but of course in a leukemia patient it could mean blasts...which means relapse.  Hoping it is mono or some other weird thing cause blasts means leukemia and in this stage of treatment that would be really really bad news.  White count is up a hair 1.0, segs 4, bands 0 which makes ANC 40 (which rounds down to zero).  RBC 2.94, HCT down more at 24.1 (that's getting close to transfusion level again), PLTS down a little at 92.  I'll post more info when I have more info...  thanks for the prayers