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. 

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.

Maintenance Day 6

Today is Ty's last day of his first round of maintenance steroids.  It has been really interesting to see him react to the 6mp/steroid combo.  6mp makes him kind of nauseous and prefer bland food.  Steroids usually make him crave salty foods like eggs and cheese, but we didn't see a lot of that this week.  He still mostly ate lucky charms and 'turkey sandwich without the turkey' and pancakes.  Steroids also tend to make him super irritated and have long crying spells but with him only taking them for five days this time we didn't see a lot of that. 

Wherever I was this week, so was Ty...here we are playing Mario together on the DS's connected

For the most part he was clingy and tired all week, wanting to sit on my lap a lot while he watched tv.  He went to bed really early a couple of nights, like at 6:30, and there were a couple of times where we had him take his medicine half asleep so he wouldn't miss it.  He has been really good about taking it though and he hasn't thrown up since that first night (tuesday).   Friday we took the kids out of school and made a family trip to Utah to go get Brady's credit card.  We went to the Airplane museum at Hill Air Force Base, went to Red Robin for lunch and then stopped by to play with cousins at my sister's house before we drove home.  It was a fun mini vacation!

See how his eyes look sunken?  That's his new baby cousin by the way...isn't he cute? : )

You can kind of see the red around his eyes in this one...weird

The last three days or so he has had pink around his eyes and his eyes have looked sunken and with his skin being kind of pale it is really a strange ghostly look.  I was worried that he might be getting dehydrated but he seems to be drinking fine.  I tried to take a picture but the pictures don't really do it justice.  I'm anxious to see how he does as the steroids wear off.  I'm hoping that he'll perk up a little and that the ghostlyness will go away.  In other words I'm hoping all of that is from the steroids and not from the 6mp cause he will be taking 6mp every day for the next 2 1/2 years and if this is how it makes him feel I'm not very excited about that. 
I just have to keep reminding myself that this is saving his life and keeping his leukemia from coming back so I won't be sad that he has to take this crap for so long.  I hate it and hate what it does to him...but I'm so thankful for it at the same time. 

He got up one morning and wanted to watch tv. I put him on the couch and he fell right back asleep

Sleeping on me at Red Robin...the airplane museum wore him out : )

Hoping his ANC is still pretty high cause we haven't made him wear his mask very much.  We are still doing lots of hand cleanliness though, I really like not getting sick : )

Starting Maintenance for Real Tomorrow!

ANC 1200!  Woo hoo!  and with normal platelets (258) that means we are finally starting maintenance tomorrow. Sigh.  It was fun to be 'normal' for a couple of weeks. : )  He is on a clinical trial so we find out tomorrow which treatment plan he gets randomized into.  We'll post tomorrow details of the treatment plan and how his day went.  WBC 3.5, HGB 13, HCT 37.5

This is normal right? : )

Maintenance Delay

Ty doesn't start maintenance tomorrow after all.  His ANC is 500!  I am super surprised cause it has been almost three weeks since his last chemo.  We were assuming he would be back to normalish right now which is why we let him go to primary yesterday.  Just goes to show you can't really have expectations with this kind of thing cause their bone marrow does what it wants and is different for every kid.  At first I was kind of freaking out cause the preliminary results before they did the manual count was 300.  My first thought was relapse...but now that I've seen the other numbers I think that isn't likely, he is just still reacting to the chemo.   HCT 33.6, WBC 2.3, HGB 11.8, PLTS 273 
We'll find out more tomorrow about when his next CBC will be and that will determine when his appointment will be.