Wednesday, March 26, 2014

A Quick Update

Wow, it's been a nice few days here lately. 
Jack is slowly recovering from the transplant. He is eating better, not having any pains, and sleeps well.
He had a follow up on Tuesday, white count falling a bit, but platelets and hemoglobin are good. His blood chemistry is finally in the range (low range, barely squeezing by) where it should be. 
Jack has dropped some weight since being released, he's at 41lbs now. (I think he's only lost 4lbs, but you can definitely tell.) The doctor isn't concerned, the first two weeks we're at home-- just giving those taste buds a chance to grow back and the stomach to settle down.
All his fuzzy hair, eyelashes and eyebrows that were starting to grow back before transplant have fallen back out. It's crazy how different eye lashes and eyebrows make one look.
He's had a runny nose for over a week, not sure if it's allergies or what. 

No fevers to report... although his temp creeps up to around 100 at night before bed every couple of days. 

He's able to go outside and go to stores with us, we just need to avoid busy times and places and sanitize our hands like crazy. 

Today I'm grateful for:
- Everyone being home. I know it's a cliché, but I was just thinking yesterday how unusual it was to have Sarah and Jack cooped up in Omaha, and now we're all here doing things together. 
- Reading books with Jack and watching him lick his fingers when turning the pages. I don't know where he learned that. 
- No fevers. It may be a small thing, but having him recover like this boosts our spirits. 

Thursday, March 20, 2014

Happy 1st Day Of Spring

We had a pretty great day today. 

Jack slept in till 11:30, had breakfast, we played some Nerf wars outside and went for a motorcycle ride. What a great day. He ate like a rock star too, taco and a cheeseburger for lunch and dinner, an apple and a banana for snacks. And he had a bowel movement. 
Tomorrow he is back in Omaha for some blood work and a dr. appointment.  

His next treatment phase, radiation therapy, starts on April 15th, so we should have a couple of fun weeks, as long as he doesn't get sick. I should have more details regarding radiation as the time nears and specialists go over it with us. 

For the next few months his immune system will be significantly weakened. He is supposed to stay away from dust and construction and house and bedding will need to be thoroughly cleaned weekly. He will need to avoid crowds and obviously sick people. 

Today I'm grateful for:
- everyone being home again,
- a gorgeous day to kick off spring,
- playing outside. We missed the fresh air. 

Wednesday, March 19, 2014

We're home from transplant!

Finally! Three weeks later we're back home. As we left the hospital, Jack said it only felt like we were there for two days. I beg to differ. 
Looking forward to some rest and relaxation...we're pretty worn out. 

Came home without Jack having to be on fluids. Yay! He's still on quite a few meds, five different kinds, twice daily on most of them for the next few months. 
I think I need one of those pill boxes to keep track of all of them. 

We have a follow up appointment this Friday, and then standing appointments every Tuesday for a while. We're on the watch for temps of anything over 100.4. Anything over, regardless of his counts for the next 100 days, he's back to UNMC for a few days stay. 

We're home, everyone is happy and looking forward to a night of uninterrupted sleep. 

Monday, March 17, 2014

Transplant - Day 12- Engraftment Day 4

Happy St. Patrick's day! We're rocking out here today and sporting all sorts of green fun today.
Nothing exciting to report, just a fun day of pics.

We jammed out with Jess, the music therapist. She has taught Jack six chords on his ukulele. He was rocking the house. Thank you to Tibor's cousins for sending him some instruments. Who knows, maybe when we get home, we'll start a band.

I covered Jack's head in some tattoos. Thank you Cheryl for sending a card with some pretty cool tattoos. He passed a few out to the nurses who forgot to wear green today. None of them would put the "Kiss me I'm Irish" tatoo on their check though.

Heard good news when the docs made their rounds -- hopefully, finger and toes crossed, we'll get released Wednesday or Thursday.
In preparation for leaving this week, they took Jack off fluids during the day to see how much he's drinking on his own. If not enough, we'll go home on fluids again. (He's doing good, I don't think we will need fluids at home.) No more IV meds, all are oral now. He's eating better day, he's even talking about food again. So far, so good. Yippie!

Sunday, March 16, 2014

Transplant - Day 11 - Engraftment Day 3

Not much to report over the weekend. Jack's white count is sky high - rocking in at 24,000. Other blood chemistry is slowly on its way up, and I'm pretty sure he will need another blood transfusion before we go home. Hemoglopin and platelets are sure pokey coming back.

Today since the hospital is quiet and empty (and white count is good), our doctor let us leave the floor. Just for today though, tomorrow it will be a zoo here again. We've been watching some construction going on here for sometime now which will be a separate cancer center and research lab - Fred & Pamela Buffett Cancer Center.  

For lunch, Jack was hungry, so we ventured over to Clarkson Hospital (which is connected and a part of UNMC) for some Subway. He ate about half of a 6inch sandwich. (Barely) I think total calorie count today is around 750. Maybe he'll have a little snack later on tonight... ice cream or something. I think they would like him to be at around 1200ish. 

Today I'm thankful for:
- Tibor and Chase joining us for the weekend.
- Happy to leave the floor. Jack poked his head outside too to get some fresh air. It has been 17 days since he had a taste of fresh air.
- Counts on the rise and no fevers this weekend.
- Last night of Neuopogen shot! Cripes, I sure hate giving these. He always cries, especially when his counts are down. They sting pretty bad. 

Friday, March 14, 2014

Transplant - Day 9 - Engraftment Day 1

Quick Friday update.

White count and Jack's cells are starting to engraft! Yippie! Hooray!

Jack's white count is on its way back. Yesterday is was 300, today it's a whopping 1,500.
So that puts us at Engraftment Day 1. I know.... this day, that day, that have all these beginning days to all the phases.

In order to be released, Jack needs: three plus days of engraftment, white count, ANC, hemoglobin and platelets need to be certain numbers for so many days, no fevers, he's eating and drinking and he is able to hop on one foot blind folded while counting backwards. Yes, it's quite the list. (joking of course on the last part.) But they want him to be healthy so we're not checking back in a day later with a fever. Next week he'll be released if all goes well in the next few days - not sure if that means Tuesday or Friday. I'm just happy to hear next week.

Today his tummy must have been too full with liquid food, he vomited and up came the NG tube. He told the doctor he's gonna eat, drink and take his meds or else -- it goes back in. Tonight he did ok, we took it slow. Tomorrow fingers crossed he wakes up craving a stack of pancakes and bacon. He's looking good and weighing in at 43lbs.

As his counts come back, his body is starting to heal itself - throat and mouth sores are getting better, he's not as tired, appetite is slowing coming back and diarrhea is staring to calm down. He says food doesn't taste the same. But that will all come back in the next few weeks.
We're not totally in the free and clear yet, lots of things to watch out for in the next few weeks, a big one is veins in the liver becoming blocked. We're on the watch for that the next few weeks along with infection and fevers. I'll be happy when we get to day 30 and then to day 100.

Tibor and Chase are joining us again this weekend in our small pad on the 7th floor. I'm guessing video games and PS4. Something similar to last weekend and the weekend before. 

Thursday, March 13, 2014

Transplant - Day 8

Sarah needed a night to rest so I came in to spend the night with Jack. 
He is going through a bout of diarrhea, which makes nights particularly tricky. 
He had to run to the bathroom 6 times between 10 and 2 am, with one of those being a blowout, needing a bedding change and a change of clothes. 
We slept pretty good from 6 am to 9 am. 
During the day he's better, in the morning he takes a shower, the doctors do their rounds, we looked at some sticker books, then the music teacher came and then the math and reading teacher. 

Music was pretty cool, I helped out on the drums, as Jack informed the instructor that I took a drumming class in college. (I did better in computer science than in that drumming class, so that should tell you about my musical capabilities.)

Other than the loose stool, which irritates his skin down there, he's doing good. 
His blood pressure is good, no temperature, blood levels are OK, no transfusion today, and his white counts seem to be on the rise a bit. It may be neupogen, or his own body making them. It's a positive sign though. 
Doctors are not overtly concerned about diarrhea, for now they're just watching it to see if it will just run its course. 

His feeding tube can become disconnected easily, not a big deal, sometimes it just leaks out on his pants and then we need another change of clothes. 

Washing clothes is a bit odd, the nearest laundry facilities are four floors down, then down a long hallway, then two floors up. Not a big deal, just a bit uncomfortable carrying a bag of skivvies around all the doctors and staff. 

(Oh yeah, since Sarah is gone, I've been growing out my beard.)

Today I'm grateful for:
- Sarah, doing a tremendous job during this treatment,
- medical technology that enables a safe bone marrow transplant and nutrition without eating,
- music teacher coming in to brighten Jack's day and teach him about music, 
- Jack staying strong and positive, and reacting well to the transplant. 

Wednesday, March 12, 2014

Transplant - Day 7

Jack had a fever Tuesday - 100.6, blood cultures were drawn and he's on an antibiotic for seven days. Probably just a neutropenic fever (body freaking out a bit because of low white count), but they don't take any chances. Blood cultures are brewing in the lab for five days--- making sure no green boogie monster (like a common cold) shows up in the petri dish.

White count is at 0. (Second day now) Hemoglobin, don't remember what his count was, but low enough to require some blood. B- is his blood type. 

NG tube was placed yesterday afternoon. Nurse did an awesome job, X-Ray came in to double check, and doctor okayed placement. Jack said afterwards that it wasn't that bad, just was freaked out not knowing what it was going to feel like. (don't blame the little dude on that!)
He will receive 1300 calories a day, (we're slowly working up to that) the liquid looks a bit like milk. The more he eats, the less "liquid food" he will receive. 
All meds go through his tube now. No stress to eat, drink or take meds. He is eating a bit now. Mostly snack foods.

Now we just wait for those white cells to make their grand entrance. 

After too many days of not enough sleep (two weeks we've been up here), I'm going home for the night. Tibor took off a day or two  to hang out with Jack. Looking forward to a day at home. My own bed, bathroom and kitchen to cook whatever it is I'm craving. 

I'm thankful for:
- Jack being a trooper through all this: blood draw last night, rough night of diareha coming and going (it's common) and NG tube yesterday. Kid deserves a medal. 
- Thank you soooo much to Tibor's co-workers making 'ready to go meals' for my two guys at home. I have heard all good things and you may need to forward me the recipes. 

Monday, March 10, 2014

Transplant - Day 5

The many faces of Jack......

TLeft: "how much more medicine to I have to take?"
TRight: "does this face creep you out, like I'm in a scary movie?"
BLeft: "sure, I would love you forever if you got me some more gummy bears!"
BRight: "do you always have to ask how much I went to the bathroom?!"

Let's see... what did we do all today.
- Dressing change. Thumbs down on that. His skin is pretty red and sore - so we switched to a sensitive skin dressing to see if that helps.

- Labs came back. White count has taken a huge nose dive. The week of chemo brought them down and then last Wednesday we started the Neupogren injections. His counts were climbing like no other, Friday: 24,000. Today 200. Red and platelets are also down - blood transfusion tomorrow.
He still has pretty good color - usually when his counts are low, he gets pretty pale, tired, won't eat.

Today we had a chat with the doctor - he's loosing weight every day. Last night was 44lbs... today I'm guessing lower. As of 6PM, he's ate maybe 300ish calories. Really has no appetite. NG tube tomorrow.  (Tube through his nose to his stomach - that's how he'll get his nutrition and meds. He can still eat too.) They'll give him some med to make him loopy/drunkish and then it's pretty quick. (nothing is really quick to a 7yr old, except a second.. should be interesting. I'm voting for an extra loopy med, maybe one for me too.)

All the blood stem cells have found their way into the bone, are seeded and we just wait for engraftment. As early as 10 days, but typically 15 - 20. A bit scary to think we have 10+ days with no white cells to fight any infection. They keep a close eye on fever - any anything over 100.3, blood cultures are collected and if needed, antibiotics are given. He had a fever last night - 100.4, they rechecked 45 minutes later and it was down to 99.6. This is the sucky part.. along with other side effects. We're just rolling with it .. the ups and downs, knowing that this is just temporary and fingers crossed we're out of here by the end of the month.

Today I'm grateful for:
- little dude spirits and sense of humor are high,
- coat hangers - Tibor (thank you very much) brought some up. This living out of a suitcase is for the birds. All our clothes are either hung up or folded nicely. I tell you ... it's the little things around here.
- green tea - this is my new afternoon drink. My treat to my self... I think I deserve one.
- Tibor and Chase - hooray, you went to the grocery store! Chase (on spring break this week) - please call me and we'll Face Time, I'll teach you how to cook for dad. It's quite simple and I'll be so proud of you! :) 

Sunday, March 9, 2014

Transplant - Day 4

Things are going well at UNMC. 

Jack has a bit of trouble taking his evening medicines, which messes up his sleep schedule. He usually gags and vomits the first round, and then needs to wait an hour before the second round of pills is reordered and ready. 
Vomiting can also increase the risk of mouth sores as well as rob him of much needed calories. 
But we've learned not to give him dinner until after he vomits. 

His appetite is definitely going down, but it's been worse. Yesterday, he had two pieces of toast and jelly, a doughnut with milk, half a slice of pizza and a few bites of popcorn. So, he's eating something. 
Thankfully no mouth sores yet. 

So, with all of the night time excitement, his counts going down and making him tired, lower calorie intake, IV fluids going through him, he sleeps pretty hard and he soaked the bed twice  each night for the past couple of days, so Sarah didn't get much sleep either. We'll get some pull-ups to at least help with that. 

Other than that, he's in good spirits, he pushes his own pole when walking around the floor and enjoys his video games. 

Overall, he is doing OK. Nights are hard, but days are fine. He's moving, eating and no mouth sores, so that's good. (No feeding tube yet! It may well come, but he may just be stubborn enough to force himself to eat and take pills on his own. We'll see.)

Today, I'm grateful for:
- spending the weekend with Sarah and Jack. (The house is pretty quiet without them.)
- Chase generously donating his prized play station to Jack for the hospital stay. (I think Jack is touched by the gesture, as he told me he wants to buy a game for Chase once he's out.)
- internet and video games. While we do have activity books and games, and he does schoolwork with tutors, there is still a lot of down time. His electronics certainly play a big part in keeping him entertained and active. 

Friday, March 7, 2014

Transplant - Day 2

So far, so good. Jack's counts are still holding on, no blood transfusion today. His appetite is not exactly rock star status like earlier last week. We have talked about mechanical eating -- not sure if he's going to be down with that. I have lots of snacks and what not.. even grabbed some microwave popcorn.. isn't everyone hungry after smelling popcorn?! This could be my secret weapon when all else fails.
I'm quite certain while in the hospital, you enter into this twilight portal of time. The days either fly by or drag on and on forever. So far, this is day ten in the hospital, I've had only one day fly by. So unfair.

Jess, the music therapist has spent some time with Jack the last couple of days. She brings in her guitar, a cart of instruments, (Jack is a big fan of the drums) and the two of them sing, laugh, write some music and sing songs together. Next week the plan is to finalize the lyrics and record the song. I'll be sure to post that next week.

I forgot, Jack was on the news earlier -- you can check it out here:

Looking forward to the weekend ... Chase and Tibor are coming for a visit. Tibor did come up for a few hours on Thursday and brought Jack some chinese from Great Wall. He was pretty happy. I might sneak out for a few hours on Saturday ... get some fresh air, and maybe (most defiantly I should say) take a nice interupted nap. We'll see.  

Wednesday, March 5, 2014

Transplant - Day 0

Jack had his transplant this afternoon, and just as the doctor anticipated, smooth sailing all the way. A tech came in 10 minutes before transplant and thawed his blood cells. Before transplant, his cells were frozen using liquid nitrogen to a cool -190 degrees. These were frozen about four months ago. 
The whole process took about an hour and a half. Jack felt fine throughout -- they did give him some Tylenol and Benadryl to prevent any nausea or fever. He was watching MineCraft videos and playing on his iPad. He was happily doing his own thing not paying any attention to all the commotion.

He received 86 ML of cells (about 3 ounces) and in that volume, there are 18 billion blood stem cells. 
Very cool.  You can see cells going through his line.
(the little white dots.)

There is a preservative they add to the bag of cells, so his body is secreting a weird odor - a mixture of cream corn and garlic. He's a bit stinky, but he can't smell it. The smell only lasts about 24 hours.
All in all, glad the excitement is over and were are moving forward.

We start neupogen shots today and Jack asked the nurse if I can give him the injection - and I can. Well guess what, I don't want to! We're in a hospital, full of nurses. He said no way, wants me to do the shots. grrrrrrrrrr.... the things we do for our kids.

Today I'm grateful for a successful transplant, a happy child that is still eating and drinking and weighing in at 45 lbs. 

Tuesday, March 4, 2014

Transplant - Chemo Day 6

We received the last round of chemo this morning -- Hooray! This one (Melphelen) is a doozy for causing mouth sores. The doctor said eating something cold like ice chips or popsicles while receiving chemo cuts down on mouth sores....suppresses the cells in the mouth or something like that. So after breakfast, it was orange sherbet and popsicles. No complaining from Jack.
It's important to keep on top of oral care, he brushes twice a day and swishes with a fancy mouthwash four times a day. 
His blood counts are dropping, so no leaving the seventh floor. Doctor thinks this weekend is when his counts will hit rock bottom.
This afternoon we had a chest X-ray to make sure no signs of pneumonia. The tech let him look at his lungs, ribs and heart -- Jack thought it was pretty cool. 

Jack has a teacher that comes in for an hour each day. (No school on Fridays.) At first he was moaning and groaning, didn't want to do school, but now he really likes it. Today, he wanted to start doing school work before the teacher came. (Write that one down...) 

Both Children's and UNMC (and other hospitals I'm sure) have Child Life Specialists. These guys work with kids and have all sorts of games, toys, activities, movies and so much more.  
These guys are awesome! Lisa from Child life came in today-- her and Jack made some pretty cool volcanoes. She also left lots of paint, paper, glue and other crafts for us. Doing crafts with mom --nahh... but someone else is always a big hit. A music therapist is coming in tomorrow. Jack asked that she brings as many drums as she has. I'm sure our neighbors on each side of us are going to love us tomorrow afternoon. 

Happy Fat Tuesday! Today Child Life had all sorts of activities and snacks for the kids on the third floor. Since Jack can't leave the floor, they had a goodie bag for him and a cupcake with the good luck baby on top. Me too -- so this room is booming with good luck... which is just in time for ---- drum roll.... 

Transplant! Also know as Day 0
It's going to be an exciting day tomorrow. 1:00 PM CST. A big mile marker in his treatment. His cells will be thawed out and given back to him through his central line. Lots of close monitoring, some extra people in the room during transplant and fingers crossed it's somewhat of a boring (because boring and uneventful is good) afternoon. Day 0 and Day 100 are pretty big mild stones in cell transplant. Saying a little prayer that today, tomorrow and down the road that all goes well, as they all anticipate it will. 

Lots of things to be thankful today: 
- Autologous stem cell transplant - they were able to collect and use Jack's own blood stem cells. He only needs one bag and they were able to collect four bags. The extra bags will stay frozen throughout Jack's life. 
- Jack is still feeling pretty good. He's getting tired a bit more and eating a tad less, but other than that, he's still himself. Still argues, gives the nurses a good laugh, (or hard time) tests my patience and is bossy as hell. To give him credit, he does following up his demands with a please and thank you. :) He is super sweet too! Most definitely. 
- Really love the staff here. 
- A foam pad for my make shift bed/couch. It was getting a wee bit uncomfortable, so I made a run to Target. I feel as if now I'm sleeping on a cloud. I can't wait to see how my bed at home feels! 
- Chase and Tibor -- Thank you for holding down the fort while we're away. We miss you guys lots. You're cooking, right?! Cereal and Ramin Noodles are not a meal. Cereal means there is milk in the fridge - FYI.  xo mom. 

Saturday, March 1, 2014

Transplant - Chemo Day 3

Quick update -- Jack is getting settled in more and more everyday. Chemo is still going well, no gurgley tummy and he's still eating like a champ. Tibor and Chase came up for the weekend and will stay/sleep at the Lied Transplant Center Hotel that's connected to the hospital. Since Jack is a patient, we have access to a room for family. 

It was an afternoon of laying low and playing video games. It was great having more bodies in the room keeping Jack entertained. 

Schedule for the next few days:
Sunday -- last day of Buslufan
Monday -- rest day with just IV fluid
Tuesday -- Melphelan
Wednesday -- transplant day (meaning they'll give him back his blood stem cells they collected a while back, and those will find their way to his bone marrow, graft/settle in, and help it produce new blood. One of the side effects of Busulfan and Melphan is the destruction of bone marrow. His blood stem cells should rebuild it.)