Friday, May 30, 2014

Scans done for the week

Jack's scans went good, he had images taken both Thursday and Friday. 
He's such a super star laying still for 30 minutes at a time! Our doctor will let us know results next week. More tests scheduled for next week, so another busy few days. Until then, we'll enjoy our awesome weekend ahead! 

Pic below: Jack getting his injection making him a bit radioactive. 
Thank goodness he didn't get bit by a spider! 

Tuesday, May 27, 2014

And we have hair!

Jack's hair and eye lashes are starting to come back. Very exciting!
After a unit of blood and 5 hours in the hospital, Jack is good to go and has way too much energy.
Well, way too much energy when getting home at 10:45 PM.
Blood is like a few shots of expresso... good to go for a while!
He asked for a bottle of Coke and some mint cookies as he was sprinting down the hall towards the parking garage. I declined his request and said he can have some grapes and Wheat Thins.
If he's in bed and asleep by 1AM, it will truly be a miracle.

Tonight I'm grateful for:
- anyone one who takes the time to donates blood. Especially if you have a rare type like my little dude does.
B- Second rarest type. Only 2% of the population has this type.

MIBG and CT scans this week

Our family had a great long weekend. We headed up to Sioux City for a few days to visit family and were back home to enjoy a few days here in Lincoln. It was a great mix of productivity, sleeping in and wasting time on the internet while watching way too much TV and movies. It was fantastic! 

"... and I'll take one of those bottles of Coke with my sandwich." 

Jack has discovered bottled Coke and has fallen in love. Tibor grabbed two bottles for a special treat for the boys on Sunday. Chase thought it was ok, Jack on the other hand is convinced this should be a new staple in his diet. He asked me why we've never bought it before. (I think he was a bit annoyed and felt cheated.) Tibor grabbed a six pack of bottled Coke yesterday and Jack's eyes about popped out. He may have created a monster. :) 

School is out and Chase is home enjoying late nights, playing soccer and sleeping in. Jack woke up today and heard Chase talking and wondered why he was home. After realizing it's summer and no more school, I'm not sure if he was happy or annoyed that Chase is going to be hanging out with us and adding to our party, making it three. He sure likes me and is used to the last nine months of having me all to himself. 

Plan for this week - Tuesday: dressing change and labs. Wednesday: more labs and he's gets injected with a radioactive material for the MIGB scan. (He has to take an iodine solution called SSKI drops with some OJ before the test to prevent the thyroid gland from absorbing too much radioactivity. The thyroid gland is more susceptible than other parts of the body to attracting the iodine/radioactivity.) 

Thursday: MIBG scan and CT scan.
Friday: possible second MIBG scan to get more images. 

Today I'm grateful for:
- lots of R&R over the weekend. Now I'm playing catch up and need to get the garden going. 
- seeing Tibor's parents - they are over here visiting from Bosnia.
- I planted some flowers this past weekend and they look so nice in front of our house. I guess I may have a bit of a green thumb. 
- Jack feeling good. He's a bit tired, not sure if counts are to blame or he's just playing too much and worn out. We'll see today with labs and what his counts are. 

Update: We're at St. Elazabeth's getting some blood this evening. Infusion Center closes at 7pm, so we had to go up to the PEDs floor to a room. We'll get discharged after. (It takes a while to get blood. They first type and match and then we wait and wait for some B negative to come. Even though he can have O negative, they usually put orders in that he receives his own blood type. Also, the blood he receives is 's a bit special, B- packed cells irradiated. Since he's had a bone marrow transplant, they do a couple different things to the blood before they give it to him. The Nuclear Medicine doctor requested that Jack get the blood tonight rather then wait until tomorrow when were in Omaha. They don't anticipate any problems with the new blood and the radioactive material, they want in circulating around the body just to be on the safe side. That's that and we're just gonna chill here for about 4-5 hours. 

Wednesday, May 21, 2014

Mid Week Update

Wow, it's already Wednesday! We've had another busy weekend. Saturday Tibor's friend Tom took us to see Godzilla at the Imax in 3D. It was great! I haven't seen the other 30 Godzilla or Godzilla vs Mega Killer Monsters to compare it to, but I'll give it a 7.5/10 stars. On Sunday we headed further up north to see my family for the day. Boys had fun playing with cousins, riding dirt bikes and loading up in the Mule for rides. (Kawasaki mule - seats six, well, 5 kids and one adult. Thank you Chase for driving all your little cousins around!)

Jack got the okay to go to school for a few days.
Monday afternoon he went for a couple of hours and then again today for a few hours. His friends were super happy to see him. He's good for about 2.5 hours at school and then it's a bit overwhelming or he's wore out and ready to come home. Today he wanted to eat lunch and go to recess with his friends.
Jack's teacher gave him a few tests last week and one this week and for the most part, he's up with everyone else in his class. We'll continue to work on reading this summer and a little bit of math, but all is good with him and school. Last day is Thursday!

Jack had his last doctor's appointment with his bone marrow doctor on Tuesday. He's about Day 80. Labs came back good, hemoglobin a bit low, he'll probably have to get some blood next week. No weight gain this week, but hopefully he'll gain a teeny-tiny bit next week. I sure wish one day he would be like, "Mom, can you make me a steak, baked potato and some steamed veggies for dinner. And for desert, I'll take a French Silk Pie." I know I'm dreaming, but it would sure be nice to get some weight on this kid.

Next week will be a busy week with appointments, labs, maybe blood, MIBG scans and CT scans at UNMC getting ready for the final part of his treatment. And then the first week in June, more tests and a bone marrow biopsy... so another busy part of a week.

I'm looking forward to a long, quiet weekend, the last two weeks we have been out of town and the next few weeks are going to busy. I need a little down time before we start the next part of treatment. Maybe a weekend trip to KC before we start the next round of treatment. There won't be any Oceans of Fun, but we'll find plenty to do.

Today I'm thankful for:
- Jack having a good time at school, even if it was only for a few hours.
- Last day of school on Thursday. Chase will be in 9th grade (a high schooler!) and Jack 2nd in the fall.
- Jack's radiation burn looking pretty good.
- No bumps, bruising or fevers the last week, so we've stayed out of the hospital. Fingers crossed he didn't pick up anything from one of his friends in school.

Wednesday, May 14, 2014

Plan for Immunotherapy

We meet with Jack's doctor today to discuss the plan and schedule for Immunotherapy. We flipped through the 20 page protocol parental consent booklet, went over appointments for tests/labs before treatment, schedule of treatment itself and have our summer and fall is all mapped out.* 
(* of course everything is subject to change, but fingers crossed we stick to the plan.) 
No scans/tests/labs until May 27-29, bone marrow biopsy and other tests are on June 2 and we start treatment June 16th. (There are more appointments and tests sprinkled in here too, hearing, pulmonary, radiation follow-up, etc.)

Here's a really, really brief run down of what Immunotherapy is- it's using the body's immune system to help fight the residual cancer that is still left. Monoclonal antibodies are proteins that are made in the lab. (Ch14.18) These guys are designed to attach to the Neuroblastoma cancer cell and then the body's immune system is stimulated to attack and kill the neuroblastoma cells. Drugs that are used in this treatment are: Ch14.18, Aldesleukin (IL-2), GM-CSF and Isotretinoin (cis-RA). Depending on the week he's inpatient, he will be getting different drugs... oh and those Neupogen shots again, grrrrr.

With Immunotherapy, all our hospital admissions are inpatient stays -  Monday - Friday. (There are seven hospital admissions with a few weeks in-between stays at home for recovery) I think the biggest side effect to this is treatment is pain. (When getting drugs Ch14.18 and GM-CSF.) When he's in the hospital and getting those drugs, Jack will be on a constant morphine drip and hooked up to monitors checking vitals. (patient to nurse ratio is 1:1 or 1:2) Not a fun time, but I'm told the morphine does wonders and can be increased or decreased depending of severity of pain. He kinda knows it's not going to be a fun time, but we'll get through it. (I may have to use bribery and iTunes gift cards to make it through our week stays.)

So, in short, June through Thanksgiving, we'll be busy with this phase of treatment.

All and all, we are starting to see the light at the end of the tunnel. The last nine months have been filled with so many emotions, sometimes indescribable. We are so thankful and feel blessed to have an awesome family, friends and coworkers that have supported us through his whirlwind journey. (Although, whirlwind journey is not exactly the word I would use to describe this event in our life, if you know what I mean. :))  Even through (hopefully) Jack will be done with treatment in November, we'll still have doctor appointments and labs for years to come to make sure that sneaky cancer doesn't come back or another cancer springs up. Damn cancer, I hate it! 

Today I'm super thankful for:

- labs came back good today! No infusions. 
- weight going up - 43.4 lbs.
- Jack is able to attend school for a fews hours the last few days of school! Yippie! He has been begging and pleading to go school. Even though they don't let kids go back until after Day 100, his labs look good, he has a cute smile and did some sweet talking to the doctor. I'm happy, but also it worries me that his immune system is still out of wack and all his infant immunizations have been wiped clean. I'll keep close communication with his teacher and school nurse if any kids are sick or there is an outbreak of chicken pox or what ever. Kinda of a bummer - I don't think he'll be able to go to school in August, but hopefully at the end of October. 
- his hair and eyelashes are starting to grow back. He looks like a little old man. Bald on top, thin on the sides. (Apple doesn't fall far from the tree, apparently.)

- Joke of the day: What kind of gun would a bee use? 
BB gun! 

Tuesday, May 13, 2014

Got A New Bike Today!

So, Jack's been feeling pretty good lately, and he's been wanting a new bike for the summer, so he got one today and a helmet to match. 
He's recovering well from radiation, and transplant, he has some pretty wicked skin discoloration around radiation sites, but they should go away in a few months. Most importantly, it doesn't bother him. 
Tomorrow we're off to Omaha for labs, and a meeting with immunotherapy specialist. 
Last week the labs showed low counts, which required a transfusion and tied up Sarah and Jack for the rest of the day. We'll see if we get by without any transfusions tomorrow. 
Here's a pic of the new swag:

Today, I'm grateful for:
- Jack feeling strong enough to ride the bike,
- primaries being over. The little guy has seen every political ad YouTube has to offer. 
- awesome weekend filled with playtime, cousins, and watching Mad Men. (Jack is becoming a fan too.) (I guess he has to learn it all somehow.)

Tuesday, May 6, 2014

Doctor Visit Update

Today Jack had a check up at UNMC. Our usual hour and a half lab/doctor appointment turned into an entire afternoon. His counts were a little low, so we hung out in the Infusion Center for three hours getting platletes and fluid. Hemoglobin was good, so no blood this time around. He's good to go now, his weight was a bit lower, dropped not quite a pound from last time.

It's so hard to put and keep weight on the little dude. His appetite is great some days and not so much others. He still loves Raising Canes but his love for food and snacks are definitely on the down low. We need to find that secret food (preferably high in calories and fat) that he can't get enough of and wants to eat all the time. Pancakes!?
He did munch on some chips this afternoon while curled up in a warm blanket watching Minecraft videos and getting fluids. 

We have an appointment next Wednesday with another doctor to talk about phase four of treatment- Immuneotherapy. (Each phase of treatment, we see a different doctor - still within the oncology group - that specializes in that area of treatment.)
I think the plan is to start Immuneotherapy roughly the first or second week in June. 
The last week in May we tentatively have three days scheduled for tests: MIBG and CT scans, EKG, Audiogram, X-rays, bone marrow biopsy and lots of labs. I think the bone marrow biopsy will be a same day surgery. Whew! 
Doctors are always keeping a close eye on making sure the cancer is still clear of the bones and hasn't decided to return or visit another area of the body. 

Today I'm grateful for:
- Jack being a super awesome kid with incredible patience and a positive spirit when we have long unexpected days in Omaha.
- our family and friends keeping a close eye on us through all of Jack's treatment.
- our fishes: Rootbeer, Lemonade, Cookie, Monster and Domino, thank you guys for all hanging around and not deciding to leave the tank early. (Update: one of them did try to make a run for it tonight, but I was able to put him back in the tank.)

Sunday, May 4, 2014

Doing Well, Had A Fun Weekend

Ok, the temperature stayed where it needed to stay, so there was no "excitement" this weekend. 
Boys and I played soccer yesterday afternoon, and today we went to Omaha. 
Jack has a cousin there and a couple of boys his age live right next door, so he likes going there to play with whoever is available. 
He is starting to remember what playing with his peers is like, and is enjoying every minute of it. 

Not much on our radar, on Tuesday he has a checkup with transplant specialists, they're following his recovery for a 100 days after transplant. Otherwise, the radiation specialist will follow up in about three weeks. 

Here are a few recent pics: