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

Wednesday, February 29, 2012

Poop

Warning, this post has lots of  TMI in it...More of the same today, he finally pooped again this morning, very painfully as usual.  His tummy hurts off and on.  His bum is a little inflamed and the doc said that if it is inflamed with virtually no white cells then when he does start making white cells it might REALLY get inflamed, so much so that it might abcess they might have to drain it.  He's going to analyze which antibiotic will really be best for this and change them up if need be.  The doc mentioned to his students that they need to watch for typhlitis, or neutropenic enterocolitis in cancer kids.  I looked it up and a lot of the symptoms match, including the sores on the tongue.  It does not sound good and though it would be nice to get to the bottom of his bowel problems, I hope hope hope it is not typhlitis.  ANC is zero as in zero bands, zero segs, WBC is up a tiny to .9.  HCT is down a little at 28.8, Platelets are down a little 106.  Really hoping he starts to feel better soon....I don't see us getting released from the hospital any time soon.  Thanks for the prayers.

3:45  Ty pretty much slept until about 2:00.  He woke up once in a while to have me sit by him or change the channel but mostly slept.  He ate a bunch of lucky charms as soon as he woke up and then started in on the pain again.  He cries for a few seconds, I ask him what is wrong and if he needs to go potty, he stops crying says no and a while later starts crying again.  He pooped again, he now has diahrrea but the pain is still there so the pain isn't coming from constipation which is what I originally thought when this all started 2 weeks ago.  I think the doc is not thinking it is typhlitis cause he hasn't mentioned it again.  I asked him why the pain if it isn't constipation.  He said he will order a test for c-diff.  Ty has been in better spirits since he pooped, but still crying in pain off and on.  He wants me to hold him while he goes back to sleep. sigh.  I wish we had more answers

Tuesday, February 28, 2012

Hospital day 2

Brady came to sit with Ty last night at about 4:00 so I could go be with the other kiddies.  I took Ryan, Emily and Merin to Costco (Brooke and Brenna were hangin with friends) and then we went to Brooklyn's Playground for a few.  It was nice to be home, Merin was finally content (she's been super jealous of Tyson lately) and happily played while I cleaned up some cute little messes from the day and got the laundry and dishes caught up.  (Merin found Emily's underwear bin and put about 14 of them on one on top of the other...found the sharpies, I hairsprayed her shirt and got most of it out...and the kids took advantage of my absence and made koolaid)  I LOVED being home and getting everything done.  It is amazing how therapeutic work is, and how good it feels to take care of your house and know you are leaving it in pretty good shape. 

I made the kids breakfast and had prayers and made it back up here at 7ish so Brady could get to work.  I brought Lucky Charms with me and Ty finally ate!  They are indeed magically delicious. : ) He refused to drink or eat anything at all yesterday.  His lips look a little better, platelets always help, and they swabbed (to check for virus in the sores) them last night and put him on acyclovir (antiviral).  He seems to be in a little better mood though he still wants me to sit in bed with him.  That always means he doesn't feel good.  They don't have all of his counts in yet, but his WBC is .8 which is lower than yesterday so we aren't expecting any improvement, except in his platelets of course since he got some yesterday.  He feels hot to me this morning, my ear thermometer read 100.7, but their armpit one read 98.something.  Technically not a fever, but hot enough to make him feel crummy I guess.  So now we just hang out and wait.  We don't have any culture results yet (checking for infection) and I'm guessing Ty won't be released until he shows some signs of improving his ANC and WBC.  We are doing good, things are working out well, my mom and dad have the other kids while Brady is at work which saves my sanity cause I know they are in loving hands.  Having Brady to trade off with up here makes it so much easier to be here.  I have to admit it is a lot easier to hang in a little hospital room when he doesn't feel good cause he just watches tv.  When he is stuck here and feels fine it is a lot of work to keep him entertained.  Thanks for the offers to help, it means a lot to us that you are willing, and thanks for the prayers.  So far, so good...it is much easier to be upbeat when you have had a good nights sleep. : )  All is well!  I love the nurse he has today, I went to highschool with her, and she is a great nurse.  (yesterday we had a trainee which made me nervous) And we really like the doc who is on this week so all is well.  I have a request to go find a different gamecube game so I'm off.  ooga mega liga diga

stats for today: weight 34.8
WBC 0.8, RBC 3.92, HCT 32.8, PLTS 125, segs 2, bands 0, ANC 16 which is zero (.016)

Monday, February 27, 2012

fever

Sitting at the hospital.  Ty fevered 101.6 about 12:30 last night so here we sit.  His fever would come and go in the night, and his heart rate is high.  Averaging about 133 beats, but going up to 169 here and there.  When it goes up like that he wakes up and gets agitated so we didn't get a lot of sleep.  He's getting platelets again today.  ANC still zero.  WBC .9, RBC 3.7, HCT 31, PLTS 8  Weight was 34.8 last night and 33.8 this morning on a different scale.  I'm guessing the first weight is a little more accurate.  He has a cold, feels like crap still and I'm tiredzzzzzzzzzzzzzzzzzzzzzzzz  He doesn't feel like playing Robots so he wants to watch me play it which is an exercise is futility.  I convinced him to watch tv for a while.  On a good note he received his antibiotics within the hour of getting here which has never happened before at PMC.  One of the other cancer moms really pushed for them to start doing that here since it really is crucial to get antibiotics in them asap when they are neutropenic and fever just in case it is something serious.   It's hard to be upbeat and positive when he is like this, especially when it isn't expected for him to be like this in maintenance.  Doing our best though and really we just hang out and wait right now.  Hoping we don't have to be here all week, but things aren't looking in his favor to go home.  He has one seg, zero bands, which makes his ANC a whoppping 9.  He wants me to sit by him at all times so I'm off.
Just so I can refer back later...he's on ceftazadime and clindamycin

Sunday, February 26, 2012

Lips

 This morning was Ty's last dose of steroids for this month yay!  He is doing okay.  He wanted to go to Grandma's tonight but still just sat on mom's lap or dad's lap.  He hasn't gotten up to play all week.
 His lips are still covered in sores.  We are hoping that all of that clears up this week since he won't be on any chemo or steroids.  Also hoping he starts to feel a little better.  He still pretty much wants mama to sit on the couch with him all day cause he feels so crummy.
So pretty much nothing new...still looking forward to next week.  Thanks for the prayers. : )

Friday, February 24, 2012

Looking Forward to Next Week

Ty seems to be doing a little better this morning than he has the last couple of days.  He's still just lying on the couch, but he is letting me get some things done this morning instead of wanting me to just stay on the couch with him.  He won't talk cause it hurts to move his lips.  Apparently the 'rash' I thought he was getting from the Septra was actually mouth sores (inside and out) from the methotrexate, the 10 pills he was taking on Thursdays.  The sores were showing up around Mondays so I thought they were from Septra which he takes on Monday and Tuesday (I didn't even think to look inside his mouth since I thought it was a rash).  You can see a couple of leftover dots from the 'rash'.  He has a sore in the corners of his lips and a big split in the middle and a sore on the tip of his tongue that are quite painful, he won't let me look in his mouth so I don't know if there are more. He eats a little here and there but always ends up crying for the magic mouthwash (maalox and benadryl) and we squirt a little on his lips and tongue.  The good thing about that is he always wants a drink after that so I'm not too worried about deydration right now.
He is off oral chemo for a couple of weeks so I'm glad he gets a chance to recover.  Because his counts dropped he will only be on half dose of chemo when he goes back on it... which means only 5 MTX pills on Thursdays instead of 10 yay!! (hopefully that will mean less mouth sores) And then 1/2 of his daily pill 6mp.  I looked up the normal dosage of MTX for an adult. They take it for Rheumatoid Arthritis.  Normal dosage for an adult (who weighs about 100lbs more than Ty) is 7.5mg per week, with a max of 30mg per week.  When Ty was taking 10 pills he was taking 25mg.  It is amazing how much their little bodies can handle.  During weeks like this we have to remind ourselves that the side effects of his daily poison is worth it cause it is poisoning the Leukemia cells too...and since it isn't normal to feel so crummy on maintenance, we think things will improve and we won't have too many weeks like this in the future.  We are hoping.
I'm excited for next week when he isn't on Dex anymore.  Beside making him feel miserable and grumpy it elevates his temperature a little, it hangs out in the 99.something range and I think that adds to the feeling crappy arena.  (warning TMI section ahead)  Wednesday he very painfully pooped 3 times, and then didn't poop at all Thursday again.  The vincristine he got on Tuesday causes constipation so we aren't out of those woods yet.  They told me to up his dose of mirilax to twice a day until things get more regular.  He is still crying a few times a night and I'm not sure if that is leg pain (which is common) or if its just the whole constipation owey bum thing.  So starting Monday he will only be on Septra.  No daily chemo pill, No steroids, No MTX!  It's not ideal for them to have a break like that during maintenance cause the idea is that they have a steady dose of chemo at all times to prevent relapse...but since he has to be off it we are going to enjoy it.  : ) 
On a brighter note, We got Tyson's gold ribbon that hung on the ACCO Awareness Christmas tree in Washington DC.  You can see the tree in the video below.  A lady from our Utah Mom's group was there and was interviewed, you also see her in the video with her baby who is an AML survivor.  She has dark brown hair with a red clip.  
I have to admit I was one of those people who knew the pink ribbon but not the gold.  If nothing else, at least I know now and can help spread the word that kids get cancer too!  And a giant Thank You to those of you who have helped and are helping to spread awareness.  Awareness=Funding=Cure...eventually.  For now we do the best we can with the poison we have.  SAVE THE DATE: September 29th we will have a team and walk at the CureSearch walk in SLC.  I hope you will join our team Idaho Fighters ($10 for adults, free for kids) and walk with us!!  We want to be the Largest group there and raise the most money of course!  Click on the link to sign up, you don't have to be there in person to join the team...but we would love to see you there!  http://www.curesearchwalk.org/saltlakecity/tysonsbravebattalion

Tuesday, February 21, 2012

5 Hour Clinic Today

Today started a little rocky, Ty woke up at 6 and asked for a drink of water.  He promptly threw it back up at 6:30.  So needless to say we had the barf bag handy on the way to PCMC.  Ty thought it would be funner as a hat...he has not been feeling good lately and was not in a good mood today.
Pink Panther kept him occupied for the trip
Clinic was BUSY!  We sat in the waiting room for quite a while.  The Child-Life Specialist found Ty a ds since all of the tvs were being used. 
Annie the Therapy-Dog did manage to get a little smile out of him, but not much.  He was in such a bad mood that his doc asked if we had already given him his first dose of steroids.
Ty's HCT was borderline, the doc gave us a choice whether or not to give him a transfusion.  Based on how crummy he was feeling we chose transfusion.  You can see the blood in the line, that takes a long time cause they have to type the blood and then prepare the blood, then transfuse it for 2 hours, then wait for 1/2 hr to take vitals.
 And when the blood transfusion was almost done...finally...a smile!  A little pink in the cheeks and ears and ahhhhhh.  We finally left clinic at 5:00 and then left the pharmacy at 5:45.  He still feels crummy cause (warning tmi coming) he hasn't pooped in a few days.  It has been hurting really bad to poop lately, party chemo burn bum, partly constipation.  He tries really hard not to poo cause it hurts so much.  So on the way home he could no longer hold it in...I've been giving him mirilax for a few days...we quickly stopped at a gas station and  I ran him in, promptly dropped his mask on the floor ew and he screamed and cried while he pooped.  Brady watched a few ladies with raised eyebrows come out of the bathroom.  I guess that teaches us that we can never really judge cause we just don't know the whole story.  I chucked the mask and hightailed it back out of the gas station cause his ANC is still zero and he was so miserable I just wanted to get home.  I think he does feel a little better now that that is over with though.
Weight 15.9kg (35lbs).  ANC 0, WBC .6, RBC 2.92, HCT 24.1, PLTS 86, And today we start steroids...yeehaaaaa...On the bright side there was lasagna waiting for him when he got home which is the perfect steroid food : )  Thank You!!  They took him off all chemo pills for two weeks because of his low counts...yay for the break!  Then if he has recovered in two weeks they will start him back up on half doses of his chemo pills.  So for the next week we hang out at home with lots of snuggles and lots of patience : )  and we'll see what happens with his counts in a couple of weeks.  Thanks for the prayers, concern, dinners, and love for the other kiddos!  As always, you keep us going!

Monday, February 20, 2012

Midnight Platelet Run

Having a midnight adventure at the hospital.  Not a big deal, Ty's fine, he just needs platelets so here we are.  Why does he need platelets you ask?  See the petechiae on his head?  Little red dots...that's blood, a sign that platelets are low.  He started to petechiae about Fridayish.  When his platelets are low he gets lots of little bruises.  He's had a few here and there so I knew a few days ago we were probably going to have to transfuse...I was just hoping he would last until we went to his appointment on Tuesday at Primary Children's.  No luck.  Tonight when I took off his clothes to put him to bed he had several more little bruises, and some new areas of petechiae.  He has also had real chappy-sore lips lately which he always gets when his platelets are low....and I don't really know if this is related other than the fact that crabbiness is also a sign of low platelets...but he has been crying in his sleep A LOT the past few days which is unusual for him.  I haven't been able to wake him up enough to tell me what's wrong, he just cries for a while and then calms down and sleeps for a little while, then cries some more.  I hope the platelets will help him sleep better.
So tonight when I put him to bed I called the on-call oncologist at PCMC.  Described to him Ty's symptoms and he agreed that we should probably get him in tonight.  Called the pediatrician on-call and here we are.  Ty was pretty mad that we were here, that I was putting numbing cream on his port etc until Brady asked if he should go find the gamecube.
Doing his fatherly duty and getting it all hooked up.  Ty has actually asked when he was coming to the helicopter hospital next cause he loves a particular game up here called 'Robots' from the movie.  (the helicopter pad is right outside the peds floor windows here...PCMC is called the horsey hospital cause it has a horse statue out front)
Ty's platelets were 8.  To put that into perspective, normal range for platelets is 150-450.  For Ty they transfuse when it falls below 10.  The past few days I've been having images run through my head of him getting a bloody nose in the night or just getting so low that he bled to death in his sleep....so this transfusion is putting my mind at ease.  You can see 'Robots' in the background.  He kept his eyes pried open till after 1:00am cause he loves it so much.  That's a pretty big feat for a 4 year old who's counts are low.
His weight is 35.4 which is great! Hopefully we will get out of here at 3am -ish.  It's so exciting to pull an all-nighter!!  Kind of like we are on an adventurous date or something : )  Really, how often do you get to blog and watch tv until 3am??
So he was almost done with platelets and suddenly his cheeks flushed and he had a weird rash that spread down his neck onto his arms and trunk a little.  They stopped the platelets and the doc came and looked at him, said it was common to have a reaction to platelets and had the nurse give him some benadryl.  Right after the benadryl was in he had a coughing fit and started shaking but it was really shortlived so I guess all is okay now.  He is totally stoned from the benadryl.  Hopefully when morning rolls around in 4 hours he will be back to normal and feeling a little better with platelets in him.  The rest of his counts are terrible too.  Sigh.  I was determined to not be a freak about everything now that he is in maintenance, but with ANC a big fat zero I guess we still have to be freaks.  Other counts HCT 25.9 (right above needing a transfusion) WBC .7, segs 6, bands 0 which makes his ANC .042, which rounds down to zero.  RBC 2.9, HGB 8.9.  ~sigh~  We head to PCMC on Tuesday for his regular monthly treatment. 

Thursday, February 16, 2012

Drug Shortage

A couple of people have asked me about the drug shortage and whether or not that will affect Tyson's treatment.  My answer is I don't know and I hope not!... but right now things are looking like they will be okay.  There is a specific type of Methotrexate that is preservative free so they can inject it into the spine of kids with A.L.L. It is in critical short supply right now and hospitals fear they will run out within a couple of weeks.  (Ty also takes Methotrexate in pill form once per week, 10 pills of it, but that type is not in critical short supply so I've heard)  The companies that make PF-MTX are working on increasing production, but that takes time and right now they are backordered through March.  From what I hear from other moms whose kids are also treated at PCMC, the doctors/pharmacy there has a good supply of it at the moment.  That supply, of course, could run out before they are able to get more and if that happens in Tyson's particular case, they would probably replace it with a spine injection of Ara-C.  Which has worse side effects than MTX so it is not ideal, but it is a comparable substitution.  He is not due for another Spinal injection (LP or back poke they call it) until April.  He had a dose of Ara-C in his spine as part of the normal protocol at the beginning of treatment.  Right now in maintenance they are trying to keep his ANC at a certain level and I am guessing that Ara-C will probably knock it lower than they want it.  I have heard that there is also a shortage of Mercaptopurine (not critical right now), which is the drug Tyson takes every day, and will take every day for the next 2 1/2 years.  I also heard that in the past there has been a shortage of Ara-C.  I've heard that making drugs for childhood cancers isn't very profitable, hence the shortages. That is kind of scary!  I have always taken for granted that if you found a cure for a certain type of cancer, certainly the medication that would cure it would be available...I guess that may not always be the case, especially in this economy.    If you want more information I will put some links:  ARTICLE ON SHORTAGE NYTIMES and UPDATE ON SHORTAGE FROM COG and  NEWS RELEASE FROM MANUFACTURER and ANOTHER MANUFACTURER Of course there are more articles on it, but that will give you a good summary if you are interested. 

Ty is doing great!  He is almost done with his first month of maintenance.  Next Tuesday starts month 2.  He still wants to sit in my lap a few times a day, some days more than others.  He is pretty pale, but isn't sleeping in the day so we aren't too worried about his counts yet.  He has chapped lips and gets a rash around his mouth once per week when he is on Septra.  I'll be asking the doc about that next week when we go down.  Septra is an antibiotic that he takes two days a week.  Some days he eats good and some days he prefers bland stuff but still eats.  So right now, no news is good news : )  Thanks for checking on him, and thanks for your prayers, we appreciate it so much!
 Had to do a pic of storytime, Ty's favorite time of day.  They wanted to read by flashlight this night.
 Walking around outside, he did his best to find little patches of snow to make footprints.  We have had uncommonly warm weather here lately, and very little snow.
Reading stories with big brother Ryan.  That's it!  I know boring right?  Boring is good!! : )

Wednesday, February 15, 2012

Growth

 I took a picture of Tyson today in a size 3T outfit that I'm going to hand down to a cousin.  I was so excited on Sunday to notice that his size 3T pants were a little bit too short!  They still hit his shoes, they weren't high water or anything, but definitely higher than they have been!  One of the side effects of chemo is stunted or slowed growth, so I'm really excited to have him wearing size 4T clothes...even if they are a tiny bit big on him.  This means he has grown a little bit since diagnosis  :)  Yahooo!  I went back and found pictures of him in the same outfit...
 Pic above is taken April 16th 2011, Five days before Ty was diagnosed.  We were at Grandma's house for an Easter party.  He kept climbing on my lap like he wanted a nap.  Grandma mentioned it, and I remember saying 'he hasn't been feeling good lately'.  Little did I know...
 This pic was taken May 1, 2011, 9 days after diagnosis.  I wish I had a pic of him in this outfit standing up so I could compare the size, but no luck.  He pretty much lived on this couch that first month.
This pic was taken at the end of May 2011, the height of his steroid chubs (giggle) A rare, happy moment on the trampoline
 Above taken October 13th 2011.  Right in the middle of Delayed Intensification.  That is his very own IV pole, complete with antibiotics, a medal with a GOLD ribbon on it for Childhood Cancer, and his name badge from Camp Hobe
And here he is today, February 15th with the same outfit on.  See how the pants are just a teeny bit high?  I have no idea how much he has grown cause I always forget to ask the nurse when she measures him...and I'm not convinced it's the most accurate measuring device so I don't know if it would give me a true idea of his growth anyway.  It definitely isn't much but we'll take what we can get. : )  He has grown up from a baby to a little boy this past year.  This time last year he still used a pacifier and wore diapers.  Wow, a lot can happen in one year!!
So obviously I got really sidetracked with this post and didn't even write about what I was going to write about which is the MTX shortage and how Ty is doing.  I'll see if I can get that post done tomorrow...Ty is sleeping in my lap right now while I type cause he was crying in his sleep...I never figured out why he was crying...and now my legs are falling asleep : )  so good night!

Sunday, February 5, 2012

Lemonade Stands

THANK YOU!!! To whoever left us a bag of lego lemonade stands on our porch!  You have no idea how much that means to us that you would think of us and leave them here.  I wish I knew who you were!  When I saw that Toys-R-Us was doing a fundraiser for Alex's Lemonade Stand I wished there was one close so we could participate.  Apparently somebody participated for us!  Thank You!!

This fills my heart tonight with such gratitude for so many people and organizations who are willing to do things for these children who don't have a voice without you.  I feel like writing thank you a thousand times.  After church today I was thinking about all of these sweet innocent kids who suffer and fight at such a young age and the song 'Consider the Lilies' popped into my head, particularly the verse that goes, 'Consider the sweet tender children who must suffer on this earth.  The pains of all of them He carried.  From the Day of His Birth'.  And while I don't understand exactly why these kids, some newborn babies even have to suffer and fight, I do see the overwhelming good that comes from it and I can't help but be thankful to have this experience and have such a great little fighter in our family.  Thank You!!!  He is still doing great by the way!  We are hoping it stays that way for a while! : )  Another mom of a cancer fighter describes similar feelings but says it much better than me, you can see her description entitled 'Lessons' HERE

Friday, February 3, 2012

Maintenance Day 11, Taking Pills

Tyson on Sunday the 29th holding his new baby niece, isn't she cute?  This is his last day of steroids for this month. 
And this is Ty today (Friday, Feb 3rd).  See how his eyes aren't sunken and dark anymore?  So I guess that was from the steroids...yay!  The last 2 or 3 days he has been eating a variety foods, (you can see from his lovely sleeves that he had spaghetti today, and he 's eating an orange : ) playing a lot more than watching tv, and only climbs on my lap 2 or 3 times a day for a snuggle.  You can see in the background he has been cutting 'presents' for me out of paper all morning and then having me count my presents.  I have 40. : )  he is still pretty emotional which I thought was from the steroids, and maybe it is, it takes a while for them to wear off, but maybe it is just cause he doesn't feel top notch from the chemo...or maybe its just cause he's four...it's hard to tell.  As far as I can tell though he is much more like a normal kid his age now than he has been for months which is such good news!  I even took him to a playgroup yesterday for a little while and he is begging to be able to go back to tumbling again.  (We'll see what the doc says about that one) 

Last night was his first dose of methotrexate.  They only come in one size so for his dose he takes ten pills every Thursday (unless he's had a mtx back poke that week)  So he took 12 pills total. 1 zofran, 1 6mp, and 10 mtx.  I guess I should mentions the dark stuff on his chest in spots...those are from the sticky things they put on him to monitor him when he is sedated...for some reason it takes several baths to get that stuff off.

He did such a good job taking them that I started filming it, he took some before I started filming, and partway through he played with the pills a little, but he was a pill taking champ!  Here's the clip...

So far so good!  I'll be interested to see what his counts are when we go down for his next appointment Feb 21st.  Until then we are adjusting well to this final phase of treatment.  I'm starting to feel 'normal' and I'm not as consumed with all things cancer like I have been.  We'll still have to be careful about germs and stuff but we are really hoping that for the most part now we can at least pretend to be normal and just deal with stuff as it comes up. 
Thank you for so much concern, dinners, and prayers in our behalf, you have kept us going through all of this and we are so thankful we made it this far and that Ty is doing great.