Day +5

now we think the jumperoo is fun after all.

our first impression of the jumperoo.

sleeping through our transplant.

Now it is day +5 and we're bracing for the bad couple of weeks ahead of us. Max's counts have all dropped as promised:
WBC: .1

Platelet: 176

Neutrophil absolute: .1

his kidney and liver functions are still good. *knock on wood*

Max has been really sleepy the last few days, and still not eating too much. Happily though, when he is awake he is in good spirits and happy to play. Also, he is eating enough so that the docs haven't brought up the idea of an NG tube again. The speech therapist mentioned starting Max with solid food in the next few weeks!!! I'm beginning to think that someday I will get to stop pumping. This is all very very good. *knock on wood*

Transplant Day!!!!!!!!

max is feeling pretty good *knock on wood.* today he got his transplant so now we just have to wait and see if he engrafts and make sure he doesn't get sick in the mean time. we bought him a jumperoo for his "second birthday" and the first thing he did when we put him in it was cry. but after getting accustomed to it he started to play a little. i don't think he'll be comfortable enough to jump in it for a while though.

6 month birthday pics

some pics

Day 0

even though it's day 0, we did not get our cells today. everything is ok and the donor donated today. but because the cells need to be flown here and the blood needs to be filtered out, we will hopefully get our cells tomorrow (Day +1). max has slowly been feeling worse and worse, although not awful. he has been eating very little and today after eating 2 oz he threw up. actually he threw up a little in the morning, then a little more later, and finally a lot and all over mommy. so we made the decision to try putting in a feeding tube. its an NG Tube and it goes through his nose to his stomach. the nurses came and put it in through a lot of screaming and yelling at 4:30 pm. at 6pm max ripped it out through a lot of screaming and yelling. so we decided that we'll give him fluids at night through his central line and let him eat what he wants for the next couple of days and see if he increases his amount.

max's diaper rash is much better, not gone, but much much better.

max now can stick his tongue out and blow bubbles as well as say m, b, d, g on a regular basis!!! he was however too sick and tired to play with PT and ST when they stopped by so maybe we'll play and eat more tomorrow.



max's cell counts for today are:



WBC: .8

HGB: 22.8

Platelet: 506



for now, minus the non eating thing, the doctors are pretty happy with how max is doing so i guess i am too. as i write, max is laying on my bed chilling out, smiling and playing. but i don't want to jinx it. tomorrow is a big day.

p.s. THANK YOU to Nicole and Andrei for visiting me and making my day so much brighter!!!!!!!

Day -8

Today we got our first Fludarabine infusion and it took 30 minutes. Our nurse had to wear protective goggles, gloves, and a gown to administer the drug. Max took it pretty well for now, but we'll really see the side effects tomorrow or later. The only thing bothering us right now is a pretty nasty diaper rash and the desitin wasn't helping so we got some magic butt cream; we'll see how well that works.

Day -9

Max is 6 months old today!!!! We've had a pretty sleepy day today, taking lots of naps maybe because its raining. After not sleeping at all on thursday night, Max has done a good job of going to sleep at 12 and waking up at 6:30, and going back to sleep for a few hrs. after breakfast the last few nights after that. Roman came and spent the evening with us on Sunday and we had a good time playing together and being a family. I got to go eat in peace and do laundry without worrying what Max was up to. So far this has been going pretty well and Max has been feeling pretty good so now I'm just nervous and waiting for something bad to happen and something to go wrong. Tomorrow we start Fludarabine, which is supposed to make Max nauseous and cranky and sleepy. Hopefully that will be all for the side effects. Today my nurse for the first time gave me a print out of all of Max's numbers for the day. She said I should have been getting a print out this whole time, so I will make sure to get it from now on.
Here are the important numbers:

Renal: (to check how kidneys are doing)
creatinine level: .3 start worrying when it gets to .7 or higher

Liver:
im not sure which one was important, but they were all normal

Hemotology:
wbc (white blood cell counts): 2.2 (normal is between 6-17.5) we're killing them so right now low is good.
hgb: 26.6
platelets: 770 concern starts with 10 or lower i guess
absolute neutrophil (aln): 1.84

im still not too sure about all of these but this is what the nurse pointed out and i remembered, so the explanations for these numbers will get better with time.

tomorrow's a big day but for now we'll enjoy our birthday.

Day -13

we played all freaking day. first with OT then with PT then we took a nap, woke up, and played with mommy. we are getting good use out of the mat Jessica (PT) brought for us. we also really like her and have a good time with tummy time when she comes. yay! also i'm exhausted but i still have to finish laundry, feed max, and pump one more time before i can go to bed. tonight max will have clean blankets again. on a negative note, i have been eating girl scout cookies all day, so my plans of coming out of here skinny and hot are being foiled by our social worker. she conveniently put them in the parent lounge and i eat 1 every time i walk by. which is a lot.

Day -14

nothing too exciting. *knock on wood* Roman came and brought me delicious food and i ate well today. although my diet suffered later because a volunteer came and i took a break to eat cheesecake with coffee outside. otherwise no news is good news. we played with OT and PT and had some fun today on our new mat!!! also the speech therapist brought us some fun toys to play with but max mostly just wanted to eat them with varying success. ok goodnight.

day -15

the last few days were fairly uneventful *knock on wood.* roman came yesterday and brought some more clothes for me and a sweater (its really cold on my side of the room). i also made it to kroger finally and bought some food. this morning (afternoon) i had a bagel with lox and cream cheese which was the highlight of my day. otherwise max and i hang out. we're working on making b and m sounds right now. we already mastered the g sound thanks to "goosey goosey ga ga ga." 1 week from today we're starting our next drug in our chemo process, it's called fludarabine.