Day +133 update

Well, Max's engraftment has fallen to 37%. Tomorrow we get a bigger boost of donor cells and pray that it works and Max's engraftment goes back up without too much GVHD.

Day +133

Yesterday I found teeth in Max's mouth!!! Two of them in the bottom center! They must have been there for a few days because they're pretty large, I can't believe I didn't notice them before. Otherwise, Max is doing ok. He is climbing as much as he can onto as much as possible and walking along furniture. We went early in the morning (7:30am) to our IVIG appointment and that was pretty brutal, but our nurse was pretty good and we got out a little after 12:30pm. His adenovirus quantity is still under 625 which is ok and he is still feeling ok. He weighed in yesterday at 8.48 kgs. but his ANC is still low and they found neutrophil antibodies in his blood. The doctors said that unless this causes more problems they won't do anything to stop the antibodies. Also we went to the Audiology department for a hearing test yesterday at 4:30pm. The ladies there were amazing. They even got Max to wear earphones - three different sets with no problem. It was like magic! He was so interested in the little games they played with him and the different sounds that he barely even noticed what else they were doing. I did not expect the appointment to go so smoothly, but they were really awesome and Max hears normally!!!
I added some pictures from Dec. 10th, Max's 10 month birthday.

Day +126

Max's adenovirus is still under control and he is still c-diff negative as far as we know. yesterday we had a really long hospital day since we got ivig and pentamidine infusions. Max keeps gaining weight and is now 8.2 kgs, because he is also eating A LOT more formula. today our speech therapist stopped by and we tried to get max to eat more solids. then max and i went for a long walk to the UC campus. it was 39 F today. on monday we'll come in and finally get an engraftment study, next week we should know whats up (hopefully). Max keeps on pulling himself up to standing everywhere and cruising along the furniture looking for things to grab off of table tops. here are a few pics. although roman still hasn't brought the good ones taken with his camera two weeks ago...

Day +118

im sorry its been a while since i've written last. everything has been going slowly but surely, just not sure which way. Max's adenovirus is now in his blood and his poop is still smelly. last week his adenovirus was very low and his c-diff was negative, but we'll see what this week has in store. max is getting ivig weekly and hasn't gained weight until today when he finally went up to 7.6 kgs. his engraftment went down to 65% last week and we got a teeny weeny little booster of donor cells on friday. Dr. Davies said that we won't be taking any more engraftment tests for a couple of weeks to let the new cells grow. Max has been crawling all over the place and opening drawers and being adorable. we're ok. i'll try to post pictures soon.

Day +103

since my last update, we've been to the er 3 times. we still have the same problem and still no one knows what is going on. our first trip to the er was the same friday that we were discharged. max started vomiting again and we expected a fever so we walked over to the hospital around 9pm. At about 2am we asked to go home since the fever never came and Max was already feeling better. Then on Sunday, Max had a fever in the morning and off we went again. The fever bought us a two day admission, even though it went away on its own and Max was feeling pretty good. Then we had a lovely thanksgiving break during which my family came to visit. Roman and I even went home for a couple of days to buy a washer/dryer set and visit friends! Yesterday everyone left and at 10:30ish Max started throwing up again. At 2 he had a fever, we went to the ER and 5 hrs later were back on the BMT floor, cranky and sleep deprived. Today, the speech therapist stopped by and we tried to feed Max solid food, which he has been completely uninterested in for the last few weeks. I'll put up the pictures from this traumatic event tomorrow or later tonight.
our engraftment went down to 76%. f.

Day +93

We're back at RMH! yay! hopefully, no more trips to the ER. its good to be "home."

Day +90

It's day +90 and we're still doing ok. Our engraftment level from friday is 88%, which isn't perfect but i was so scared it was going to be significantly lower that when i heard 88, i was really thrilled. I guess everything is relative. We did stop the cyclosporine today, so now we wait for what happens. So far, nothing has happened, but we're hoping for the engraftment to go up in the next few weeks. We were told that first it will go down some more, and then they expect it to rise again. I really hope so. Also, I hope we don't have to deal too much with GVHD because that would be unpleasant to say the least. As I was writing this Max woke up, I tried giving him some more milk and he threw up like crazy. i'll update later.

update:

i guess really its day +91 now that it's 6 am and we're still awake. After he threw up I called the BMT doctor on call and he said to just keep watching him and try to get him to hold down some water. Max didn't even want to drink the water. Also, he pooped what looked like diarrhea so I called the bmt on call and we decided that Max should go to the hospital. So off we went to the ER and sat (not in the waiting room, but a private room) and waited for the RN, then for the resident doc, then for the supervising doc, then for the rn again, then for them to reach the BMT docs. While we were there, Max pooped what looked like the pears he ate earlier. Seriously, the poop was a cream colored purree. The RN took samples of his blood and his weird poop. Max was given fluids at 2 am, and at 4 am he finally got his stress dose of steroids. Around the same time he finally spiked a fever of 38.3. At 4:30 am I noticed Max was feeling slightly better because he started sucking on his binky, something he uncharachteristically hadn't done since he started feeling sick. Then he got tylenol for his fever, and an antibiotic for any infection he may have. Finally, almost at 6, we were sent up to the BMT floor to our room, where we will stay for some days until we get to the bottom of Max's episodes.

I did speak to the BMT doc here in inpatient and he also believes its steroid withdrawal, but we'll see what grows in the cultures.

Good Morning and Good Night!

Day +88

We just had an amazing weekend, thanks to daddy for coming and spending two whole days with us! We are still weaning the cyclosporine and hoping that Max doesn't get any GVHD. I wish I had some engraftment results to post here but we don't have any. Strangely, when the docs called the lab they were told that the lab never got Max's blood specimen on Monday! Either the nurse never took the blood, or maybe it was lost in transit, or maybe the lab lost it. Yes, I was furious because now we haven't gotten a number for 2 weeks. Who knows what we have now!?!? They did confirm that they got the specimen on Friday and will rush the results so we'll hopefully know on Tuesday. I really hope Max's engraftment is still decent. Max's other numbers are good.

Day +82

We're still inpatient, but hopeful that we could leave tomorrow or wed. All only wait of Max's cultures are still negative and I think they only wait five days for something to grow so I guess we're clear. Max still has diarrhea though, and hopefully its due to the antibiotics that he's been on for the last few days, but hopefully a stool sample can go out tomorrow to see what may grow in it. He got his IVIG today instead of tomorrow, since we're here anyways, and because of the benadryl that came with it, Max slept for 3 hrs.!!! It was the best sleep I had in days!
As far as engraftment goes, Dr. Davies plans on reducing the cyclosporine down to zero in the next two weeks. Hopefully that will increase our engraftment and not cause too much GVHD. Max is crawling now and pulling himself up to sitting by his crib rails!!! He's growing up so fast, I can't believe it.

Day +79

This morning still none of the cultures have grown anything, and now the dominant theory is that Max was going through steroid withdrawal. It has all the same symptoms that Max had and as soon as they gave the hydracortisone he felt better. So now we'll be getting steroids until Max starts making his own. Just in case there is some infection, they're still giving him antibiotics. Also, Max's engraftment level fell again to 94% and they're planning on decreasing the cyclosporine today, but dr. davies wants to do it gradually so that Max doesn't get GVHD. This worries me, because I wonder how far she's willing to let his engraftment fall before using more drastic measures. I also wonder if it won't be too late and we would lose our engraftment all together. Also, since we're in the hospital, I was woken up several times last night because our night nurse woke Max up every time she came to do vitals and whatever else. Not a good night in that respect. But Max is doing ok still so I'm quite happy with that.

Here are his numbers from this morning:

wbc - 4.4
rbc - 3.14
hgb - 9.7
platelet - 276
anc - 3.6

have a good day everyone.

Day +78

We're back on the BMT floor after spending last night in the PICU. Yesterday, Max was nauseous and I brought him to the clinic to be looked at by some professionals to see if he was ok. While there he got really pale and spiked a fever. Also, his blood pressure began to drop so he was admitted right away to the PICU. None of his tests came back yet, so we don't know what went wrong, but the doctors think he may have a bloodstream infection so they're giving him some antibiotics to treat whatever it may be. I'll try to keep this updated, but for now, Max hasn't had a fever since last night's spike and he's been keeping his bp up on his own. He's also been playing again today, so we're taking it as a good sign.

Day + 75

We went to the hospital for labs because Friday's results weren't all that great. His wbc went down to 2.7 and his cyclosporine level also was way too low. Our wbc went back up today to 3.5 and his platelets are at 289 and anc at 2.47. (yay!) Also his cyclosporine level was much better so no changes to his meds today. We do have an infection called C. Difficile and one of the symptoms is a lot of poop. We're taking antibiotics. We just got rid of Max's steroids so it sucks that we have to add another med to replace but I hope we'll be done with these in 10 days. Also, Max's blood pressures have been good and now that he's off of the steroids maybe we'll get rid of his blood pressure med too!

Day +71

We've had a very crazy week this week. On Monday I asked to draw the labs instead of waiting until Tuesday so that by Friday (tomorrow) we'd have the engraftment results and be able to make some decisions. I mentioned to the nurse that when I flush Max's left side C-line, he cries. So we decided to try it out and as she pushed the heparin in, Max's left side where the line was inserted swelled up immediately. We went to get an ultrasound of Max's left line and found out that it was completely clotted and needed to be taken out. Luckily, Max can get by now with just one line since his cyclosporine is now given orally, hopefully it stays this way. So when we came back Tuesday for our IVIG, we had to be admitted into the hospital so that the surgery could happen sooner rather than later. So we stayed over night and we couldn't let Max eat from midnight just in case he would get surgery Wednesday morning. Max and I ended up not eating for 16 hrs. and we were very disappointed that it took so long to fit us in. Finally, though we got one line out and made it back to RMH by 6 pm, just in time for dinner. Of course though the blood from his removed C-line site leaked onto his dressing for his right C-line, so I had to change his dressing again later.
Today we had a pretty good day and my parents finally came to hang out with us for a couple of days and brought with them a playmat. Hopefully Max will start crawling soon. Our engraftment results came back today and they are still at 97%, and I'm still worried although maybe I shouldn't be. Tomorrow hopefully we'll be finished with our steroids, but we'll see.

Day +68

enjoy!

Day +65

Good and bad news today. The good news is that Max is feeling well and his steroid dose was lowered again. Also, his cyclosporine will no longer be given through IV, but orally and his blood pressure med will only be given at night. Also his white blood cells went back up to 4.1 and the rest of his counts are good too. This is all great. Here's the bad news - Max's engraftment went down to 97% this week. Scary. I've seen such patterns and I'm afraid that Max's engraftment will plummet and we will have a tough time getting it back. This sucks because I was just beginning to hope that we could get through this without any major complications and 100% engraftment.

Day +62

Our white blood cell counts are in a slump ~ only 2.9 today!!! The doctors said not to worry, but of course, I'm worried. Anyways, the rest of our numbers are OK, although I don't remember what they are right now and I don't have today's print out. I just wanted to add some new pictures of Hairy Max. Maybe if he keeps growing hair like this, he'll be all set for Halloween as a werewolf or a monkey.

Day +61

Tomorrow we're going to be two months post transplant! I can't believe it has been that long already. Recently, there hasn't been much news, which is great! Max's counts were a little bit lower on Friday, but we are still 100% engrafted and Paula (our NP) said that wbc counts go up and down so we're hoping they'll go up tomorrow. Friday wbc was 5.3, so we just want to be back in the 6's tomorrow and I can be happy with that. Max's steroids were weaned again so now we only have 2mg once/day!!! I wish I could report that not taking steroids at night has helped Max sleep better, but I can't. Apparently, Max only sleeps through the night when Daddy is around and I guess I don't blame him. Also, Max is spending more and more time on his tummy these days. Ever since he learned to roll from his stomach to his back, he's been just hanging out and playing on his tummy. He even is making sort of crawling movements, and I'm not sure what we're looking for, but I think its time to acquire a nice large playmat. Maybe tomorrow I'll try and put up some new pictures. Hope everyone has a good quiet sleepy night.

Day +58

everything is ok here. Max was up every couple of hrs. for a snack of milk last night and i was exhausted all day. i even overslept and missed our 8am appt. luckily, we were able to just come in later. The down side to coming in at 9am instead of 8am is that you have to wait a long time to be seen, so we only got home at 11:30. On top of that, our hemoglobin count came in really low all of a sudden and so we had to go back to do another blood test. our hemoglobin is fine, but we did have to spend an extra couple of hrs. at the drs. So the whole day today has been off, and hopefully we'll sleep a good night tonight and have a better day tomorrow. Daddy is coming to see us so i might get some rest finally!

Day +50

Here we are at day +50!!! I can't believe we made it so far, and how far we still have to go. As I write this Max is sitting and playing in his crib. He's very cute and smiley this morning. We're still on our weird night schedule but at least we slept in until 11 this morning so I'm not too upset. Normal schedules are for losers anyway, haha. We are still having some poop issues and our gvh hasn't gotten much better or any worse so its ok.
our numbers from tuesday:
white blood cells: 6.4
hgb: 10.5
platelets: 238
anc: 5.2

all of these are in the normal range. we still don't have a normal immune system, but we're doing ok and im quite ok with that.

Day +45

just a quick update. max pooped again. it may be the prunes.

Day +45

We've had a really great last few days thanks to auntie lena's visit to our temporary home in cincy! Max really enjoyed playing with auntie lena and laying in bed with a nice girl on each side. Elena and I ate cupcakes, brownies, cookies, and drank coffee. We also played on facebook, odnoklassniki, and watched project runway. We did some arts & crafts and continued my mommies work on max's photo album. Sadly auntie lena had to leave this morning and go back to rochester. We hope to see her on skype soon.
Our big news for today is that max learned to roll over from his stomach to his back!!! He's so good at it now that i don't think we'll ever get another second of tummy time again! This must be thrilling for max as we all know how much he likes to be on his stomach.
The other thing that happened today is that max pooped! Max has been constipated for the last two days and today roman and i were getting really worried so i rubbed max's tummy until he started straining and straining and crying and finally he pushed out a little green chunk of poop! then another huge hard chunk came out. then, i held his legs up without the diaper and roman and i cheered for max as he pushed out 4 more hard green poops!!!! it was really exciting. later he pooped 2 more times, this time healthy looking green paste!!!!! yay.
max's counts are increasing steadily and he is 100% engrafted as of 9/29!!! Also, he has a little bit of a rash on his back, arms, and legs. The drs think that it may either be a mild case of graft vs. host coming on or just irritation from the little black hairs he's beginning to grow everywhere. either way, we're rubbing him with steroid cream and watching to make sure it doesn't get worse. hopefully it won't. we also didn't wean the steroid this week so we're going to have to deal with an extra week at least of restless nights and naps during the day. i can't really complain though, since its a small price to pay for his health.

Day +40

not eventful. i fasted. then i ate and watched dancing with the stars. tomorrow we get ivig at 8:30 am so we have to be up early and max isn't even a little bit sleepy. ugh. better than him being sick so i'll take not sleeping.

Day +39

Daddy went back home to louisville today. we spent the entire day skyping and playing with max. max is getting pretty good at standing while holding on to the crib rail and he's excited about the new view. nothing else to report here, im going to try to fast for yom kipur this year. i attached pictures.

Day +38

yesterday's engraftment results were 100% again!!! that means that all of the white blood cells coming in are the donor's. yay!!!!! we love good news. daddy is here for the weekend so we're having a good time together. i also have my laptop back so i'll post some pics soon of max's adorable and fat steroid face.

Day +36

Everything is going ok and nothing too exciting is going on. we like it this way and are happily waiting for our cells to keep growing. today we went to the clinic in the morning at 9:30, which was way to early for both max and myself. it messed up our whole day and we had to spend hours and hours sleeping it off and recuperating. we aren't morning people.
here are our numbers for today:
wbc: 4.5
hgb:9.5
platelets: 120
anc:3.67

this is all very good. we ate sweet peas again and max's poop hardened into adult smelly poop so it isn't as much of a pleasure to change his pants anymore. the speech therapist stopped by and gave max some puffy fast dissolving cereal to try but he didn't really go for it. tomorrow we'll have the results for our third engraftment, but so far we've been 100% and i hope it stays that way forever. ok time for grey's anatomy!

Day +32

My computer stopped working. It has been awful, because we moved to Ronald Mcdonald house on tuesday (Which is awesome, but scary) and the internet in our room won't work until maybe tomorrow, and the internet in the lobby is super super super slow. so when i had the good news on tuesday that we were leaving, i couldn't even post it! Not that i would have had the energy to really write a lot, because moving was exhausting! I can't believe how much we have acquired over the last two months, partly because i stocked up on diapers and clorox wipes. It is very clean and nice here, it's hard to believe that the house is a non profit. I'm absolutely amazed at how much people give, both time and money.
Max has had a runny nose and is very congested. He had a cough over last weekend but that went away. The only real problem is that he isn't able to eat as much, because he is so congested and can't breathe well through his nose. So instead of milk, I have been giving more solid foods like rice cereal (mixed with milk), sweet potatoes, sweet peas, squash, and green beans. He LOVES sitting in his bumbo seat, and eating from a spoon.
Otherwise, Max is still doing ok. He is still 100% donor cells and his white blood cell count keeps rising. Also, he is making his own platelets and his own red blood cells so we haven't needed to get any.
Roman came this weekend and we finally got to spend the entire weekend as a family in a very homelike setting. I also got to use the internet freely, yay!!!

Also, did i mention the dinners here? They're delicious and we're about to go have some now!

Day +24

In the last update, I mentioned that I would like for the white blood cell counts to go up faster. The next morning, yesterday, I woke up to the news that our wbc went up from 1.6 to 13.6!!! Our ANC was 11.7, but our monocytes fell to 13. Awesome!

Since the wbc and anc went up so much they stopped the gcsf (the drug that was stimulating max's cells to come in faster), and today the counts look a little more normal.

wbc: 5.9
hgb: 8.9
platelet: 83
monocyte: 10
anc: 5.19

great news!

also, yesterday, max (FINALLY) rolled over onto his tummy for the frst time on his own!!! of course he had no intention of ending up on his stomach, he was only curious to find out where the roll was going. as soon as he realized where he was, he started crying.

Day +22

Today we're 7 months old!!!!!!!! I can't believe how fast time flies!

So the last few days have been pretty good. our white blood cell counts are pretty good, they've been around 1.5 for the last couple of days and our neutrophil (anc) has been at 1.12. I'd like for them to go up faster, but it is what it is, and it isn't bad for sure.

ps. good news:

we're 100% engrafted!!!!!!!!!!!!!!!

our tests came back early (we were expecting them tomorrow evening) and dr. davies came in around 6 pm and delivered the good news. :)

Day +18 and Day +19

Day +18

WBC: 2.0
HGB: 9.1
PLATELET: 28
MONOCYTES: 15
ANC: 1.64

Day +19

WBC: 3.5
HGB: 9.4
PLATELET: 37
MONOCYTES: 23
ANC: 2.66

Good news these last few days for Mr. Max and family, I hope it continues. They'll draw the labs to test for engraftment tomorrow. Hopefully the results are good.

Day +17

Today has only just begun, but I'm too excited not to post these!

WBC: .8
HGB: 9.3
Platelet: 29
MONOCYTE: 39
ABSOLUTE NEUTROPHIL (ANC): .42

The doctors said that when ANC is between .5 and 1.0 they can test for engraftment, but its labor day weekend so they'll probably send the blood on Tuesday if everything continues to go well. Also, we have to wait longer to get the results because our donor is a male. Still, so far today has gone pretty well!

P.S. Max now is back to eating 6-7 ozs. every 4 hours due to my torturing him yesterday and letting him go hungry after he started whining 2-3 hours after eating. as soon as he's eating normally again, im going to start working on sleeping through the night!

Day +16

We got a few cells!!!!

WBC: .2
HGB: 8.6
Platelet: 19
Monocyte: 29
ANC: .06

YAY!!!!

after writing this good news, i feel bad complaining that i barely slept all night. max woke up literally every two hours and ate 2 ounces. i was so mad! i took it out on my poor husband in the morning and im sorry but i had to. rice cereal is going better, i can already begin to imagine the day when i can stop pumping!

Day +15

ok, im sorry for the pathetic lack of updates. i've never been able to keep a diary either, and that's because im way too lazy to consistently write in it. so i'm sorry, and i'll try to do better. the last 10 days have been fairly boring except for yesterday and today. but i'll go in chronological order with the help of my lab printouts.

Day +6

we got red blood cells because our hemoglobin was low. no big deal, max turned pretty red and one of his feet swelled aprox. 3 hrs. after the infusion. three nurses and the doctor looked at it and decided to give benedryl and see if it helps. it did and we went to sleep.

Day +9

our platelets were at 8 so we got an infusion today. again, no biggie. grandma and grandpa drove all the way from rochester today to visit us! i went to louisville for a mini vacation with roman. we went to the kentucky state fair for the first and hopefully the last time on saturday. we had a delicious fried snickers bar and that made the whole thing worth it.

also on saturday (Day +10) our wbc finally went to 0.00, yay!!!!! max started losing hair too.

Day +11 max continued to lose hair.

Day +13 we needed more platelets

Day +14

RICE CEREAL!!!! it was hilarious! max kept pushing it out with his tongue and getting it all over his shirt. i think he didn't like it. pictures are above.

Day +15

WE HAVE MONOCYTES!!!

WBC: .1

HGB: 8.7

PLATELET: 24

MONOCYTES: 50!!!! these are the baby wbc's that we're looking for.

ANC: .05

also, our eating has gone up to almost 30 ozs. per day!

YAY!

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.

Day -22 through Day -19 (Campath Days)

July 28, 2009 (yesterday) was our first day at Cincinnati Children's Hospital. we didn't get our first dose of campath until 11pm and the real fun started at 4am the next morning. max had a fever of 38.4C and threw up yellowish goo all over his blanket. he also missed his meal. happily there is a washer and dryer here so by 6am we had our blanket back. by 6:30am i went back to sleep for a few more hours.



July 29, 2009 (today) day -21. max woke up around 9am in a good mood and hungry. he was asleep again by 10am. at 2:30pm i woke him up because the nutritionist and speech therapist stopped by and it was time to eat. he was again in a good mood and impressed the speech therapist with his excellent sucking abilities. later he got a fever and was sick pretty much the rest of the day. At 10 pm he got his second Campath shot.

July 30, 2009 at 3:30 am Max woke up hungry and felt pretty cool so I fed him and changed him. I went to pump some more milk and when i was finished he had a fever of 38.5C. Then he threw up all of the milk i had just fed him. finally around 6am he went to sleep. He was sick all day and finally got the hives that everyone had been expecting in the afternoon. He was itchy everywhere and let us all know how he felt. They went away with an infusion of benedryl and hydrocortisone. i got a volunteer to sit with him while i ate and then another to sit with him so i could get to the store. by the way the United Dairy Farmers is a really expensive convenience store. later max felt better and got to skype with grandpa, uncle mark, and daddy. also we got a dressing change and another dose of Campath.

July 31, 2009 (day -19) we woke up at about 4 am hungry and ate about 6 ounces. Max had hives on his legs and arms this time, but no fever yet. The nurse gave him an iv dose of hydrocortisone and some tylenol by mouth to prevent a fever. It Worked!!! Max happily went back to sleep only to wake up again at 8:30ish hungry. He's been awake and playing all day. He loved his time with both the physical and occupational therapists who said that he was developmentally normal!!! Yay!! not that we had a lot of doubts, but him being sick does make us worry about that stuff too. He was hungry again at 1pm and even though he isn't eating as much at a time, he seems to be back on schedule. Now he's napping, hopefully the rest of the day will go at least as well as the first half.