Every Little Bit Counts

Ty is doing great!  He has been back on his chemo for about a week and so far feels pretty good.  We went to Don Aslett's Museum of Clean and we had such a great time cause Don Aslett was there and gave us a tour.  We got to see lots of stuff that 'normal' folks don't get to see... like the inside of the clock tower.  In that pic we are washing clothes the old fashioned way. Ty didn't even have to wear a mask!  We sure are enjoying his high counts. : ) He has had such a great time being 'normal' the past few weeks that I just have to add a couple more pics of his fun cousin time.

 But don't leave until you read the last of this post cause it is the most important. 

Update from this morning at the very bottom...

His face gets a new pink spot on it each day it seems, I am guessing that is from the methotrexate that he takes on Thursday.  Especially since we can rule out Septra cause he isn't on that right now.  Hmmm so many mysterious things.  It just occurred to me that it could be impetigo since he was around a little cousin with it a while ago, I guess I should probably get it checked out even though I already have the medicine that treats it.  Anyway, I'm getting into too many details. : ) 

Last but not Least...
*Please help if you can...every little bit counts*
We just found out a local 6 year old cancer fighter relapsed after successfully fighting off his brain tumor last year.  It is devastating news and I know you probably don't know him, but if you have an extra five bucks lying around it would be really cool if we could help out his family.  I want to respect their privacy at such a difficult time but just know their family has had a very difficult road and could really use some help.  They call him Boo, he needs a miracle to survive, and you can donate through paypal on our Idaho Fighters page by clicking HERE.
*Update* Ty vomited this morning which shocked me, he doesn't throw up a lot from chemo.  Then I realized that he ate breakfast this morning right when he woke up which he never does.  He takes his chemo at night so hopefully he can sleep off most of the side effects and he never feels like eating in the morning.  I always let him eat what he wants when he wants and sometimes I feel guilty about that but this morning reminds me that he does still feel nauseous and that I'm right letting him take the lead in what he wants to eat when.  I do try to encourage healthy foods and if he wants a treat he has to eat five carrots, but especially early in the morning...I can guess just how yucky he feels.   It is hard to know sometimes cause he doesn't really know how to express how he feels yet.  So I guess the vomit was a good reminder for me.

Back on Chemo

 The foot is doing great.  He started walking on it with the boot that night, and all the next day and by Saturday he was limping around without the boot.  He has a strange little rash around his mouth again, and the one around his eye hasn't completely gone away yet but they don't seem to be bothering him so I'm not too fussed about them.  He's been off Septra for 2 weeks now so I guess that isn't what caused the rash.  His lips are finally looking like normal!  They've been peeling nonstop for weeks.  He's still limping a little but he is also running and playing and being a kid.  It has been a fun week with bike rides, some fun playing with cousins...

the arcade/fun center...

And a mid-LDS General Conference picnic with grandma and Auntie complete with soda geysers.  General Conference was so so good, what a great way to spend the weekend!  Of course my most favorite favorite talk was by Ronald A Rasband.  You can watch that talk by clicking HERE.  I also loved THIS ONE.  and THIS ONE.  Don't worry! Each talk is only about 11 minutes long, and they are so so inspiring! 
I'm excited to listen to them over and over again over the next few months.
 After 6 weeks of no chemo he had a CBC to see if he can get back on it.  His ANC is 2.7!  That's 2700 which is in the normal range.  WBC 5.7, HCT 35.7, PLTS 294, HGB 12.2.  Everything looks great so he starts back on chemo tonight.  That's 1 6mp pill every day and then they cut his mtx (methotrexate) pills down to 6 every Thursday instead of 10 like he was taking.  I am surprised cause I figured they would cut the 6mp (mercaptopurine) pill in half too but they are keeping that the same.  My prediction is that in 3-4 weeks from now his ANC will be back down to zero which is not what we want it to do.  We want it to stay at about 1000 all of the time, which is lower than a normal ANC, but higher than what is considered dangerous for his immune system.  That way he can stay on his chemo which will give him the best chance of staying Leukemia free.  When his counts tank they will take him back off of the chemo until ANC is back up to 1000 again. 

We'll see, hopefully my prediction is wrong and this is the dosage that is just right for him and we can finally be sort of stable and make some plans...but I'm not betting on it based on his reaction to the 6mp during consolidation last june, and the exact same reaction to it in February.  I'm thinking somewhere in the April 24th through May 1st timeframe he will be back to neutropenic....So we are going to enjoy a normal ANC while we can! : )

Oh, and his TPMT enzyme test came back normal so he doesn't have the enzyme deficiency and should be able to process the 6mp normally.  That's good news and probably the main reason they aren't cutting his 6mp dosage.

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!

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!

CBC

 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! : )

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.

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.

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. 

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

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

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

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)

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

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. : )

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. 

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!

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.