Friday, December 26, 2014

And the Central Line is Out!!

Jack had surgery this morning to remove his central line. The procedure went well and he's pretty happy it's out. He had a minor melt down when there was talk of an IV, but surgeon said it wasn't necessary, thank goodness! No stitches, he can shower on Sunday and the steri strips will fall off in a week or so. Easy peezy. Jack says he feels okay, no pain so far.

Little dude only clocked in at 40.2 lbs this morning, so he defiantly has a lot of weight to gain yet. He's doing good eating thanks to the appetite stimulant. It's a type of steroid, so not sure how long the doctor wants him on it. Maybe another month or two max. Our next appointment with our Oncologist at Children's is January 8th for labs and what not.

Now we have a long weekend of traveling to see family for Christmas. Last year we missed out on the big family get togethers, avoiding large crowds and germs. I'm still not thrilled at the idea of Jack being around anyone sick, but maybe that's my own paranoia.  I'm sure the first week Jack is back in school, he'll come home with something. ugh!

Pics: Jack's line removed this morning and Jack sitting with all his surgery bears. One for every surgery. That's nine little bears! 

Thursday, December 25, 2014

Merry Christmas

Merry Christmas to all of our family and friends!
Jack is feeling and looking good.... and even eating like a rock star. I'm guessing little dude is about 41lbs now. Tomorrow he has a small surgery to remove his central line. He's excited and a little anxious. Crying and laughing all at the same time. This will be the ninth surgery he's had, Wow!

We will be traveling over the weekend to spend time with family. Hoping Jack will feel okay and isn't to sore.

Today I'm grateful for:
- boys having a great Christmas
- everyone is happy and healthy
- and the central line getting removed. No more more dressing changes. Woot!!Woot!! 

Sunday, December 21, 2014

Getting Ready For The Holidays

It's been a pretty nice week. 
Jack is starting to eat better, especially on the days when he's not having a bowel movement. 
We're continuing our walks, tonight we went to downtown Lincoln and took a picture in front of the new light sculpture. (We also discovered a pretzel bakery, which proved to be pretty tasty, even Jack asked for seconds.)

Last week, while at school, Jack received a "Distinguished Coyote" (his school mascot) award, which includes a medal. This is his third Distinguished Coyote medal, and he is so proud of them. He would wear them around house clickety-clacking with every step, but we didn't mind, as he was so proud of them. the first two really made him feel a part of his school, even though he missed a year and a half. 

His central line is coming out on Friday!!!
That is a huge milestone. Among other things, Jack will be able to go swimming, and Sarah won't need to do nightly flushes. No more weekly dressing changes either! Those are a painful ordeal for the little guy. 
Blood labs will be drawn throug his finger, which will cause some pain and anxiety, but overall it should be easier on him. 
So, surgery on Friday, then Christmas travel on Saturday. 

Today I'm grateful for:
- YouTube, Fresh Prince, Phinneas and Ferb, and other good shows that Jack's been enjoying lately. 
- Campbell Coyote, three times! (And all the wonderful Campbell faculty and staff. Everyone is so supportive and excited when they see Jack at school.)
- Being able to get the line out on Friday. 

Sunday, December 14, 2014

Walking Weekend

Jack is becoming a real walking machine. He loves to go to stores and talk about toys and things. 
We've visited Target, Shopko, ToysRUs, Hobby Lobby, Hobbytown, and even Home Depot. 
We walked around the neighborhood and even on the treadmill. 

On Friday, Jack also spent half a day at school, having a great time with his classmates. Hoping he'll be able to go a few more times this week. (If he's strong enough.)

Last night, we found some "BeanBoozled" Jelly Belly jellybeans at Hy-Vee. BeanBoozled are these heinous jellybeans that have flavors such as vomit, rotten egg, stinky socks, skunk, lawn clippings, etc. But in the same bag you get the normal ones, like cotton candy, popcorn or tutty-fruity, so you don't know which one you're about to eat. So that's what we did for fun last night, tried rotten egg jellybeans and recorded ourselves. It is hard to describe how bad they taste, and how funny it is to watch people eat them and the faces we make. Some tastes, like toothpaste, stinky socks, or lawn clipping are just as bad as they sound. Biting on a rotten egg one, or skunk or vomit is pretty much a life altering experience. 

He eats OK, nothing more than necessary, but he does surprise us sometimes and eats a whole meal without nudging. I don't think he is gaining any weight, but for now I'm just hoping he gets into the more regular habit of eating without complaining. 

Bowel movements are still hard for him and get him bent out of shape for a couple of days every few days. He does take a mild stool softener and a laxative, but if we overdo those then he has just as much trouble with cramps, runny stools and running to the bathroom every twenty minutes. 

So, the focus for now is a steady, healthy, high calorie diet, and lots of walking and moving around. 

I'm super grateful for:
- An awesome weekend, and great walks. Nice mild weather lets us enjoy fresh air,
- Drawing and painting with Jack, we're making some Minecraft inspired masterpieces,
- getting BeanBoozled. 

Thursday, December 11, 2014

Test Results

Our doctor called us early this evening and gave us the best news ever, all Jack's labs, urine and bone marrow results look good! Hooray!! 
On the MIBG scan, the radioactive marker uptake did show up in the liver. But compared too the CT scan, the doctor isn't overly concerned. The plan is to keep an eye on the it through labs and make sure the liver is doing ok. 
His eko-gram did show his heart wasn't releasing all the blood it pumped in, so we will redo those tests. Fingers crossed it was just anxiety right before the surgery, Jack was pretty upset and squirmy while they were doing the test. (It's like having an ultra sound done on your heart, and there isn't much fat on him. Any sort of pressure on his ribs in not the most comfortable.) 
We have the thumbs up for his central line to be removed, which Jack says he wants it done before Christmas. Those weekly dressing changes stir up quite the drama, so it will be one less thing to worry about. Plus, I won't have to flush his line every night and worry about the dressing getting wet when he takes a shower. Another hooray!! 
We go back up to Children's the second week in January for some more labs and a check up. When his central line is removed, clinic visits will involve a poke for labs. He's had pokes in the hospital before and knows those phlebotomists are like rock star with a needle. (What a job!)

We are planning on Jack going back to school after the Christmas break. Slowly easing into the routine of school and hopefully it won't be to overwhelming for him. He hasn't been to school for a year and a half and he is pretty excited to go back. (Some days he is and others he has declared that I will homeschool him for the rest of his elementary days. Nope, not happening.) We are planning on going for a visit tomorrow and a few days next week for a few hours.

So tonight we are all doing the happy dance around the house. We have been anxiously awaiting the test results, which take a bit longer because the bone marrow and urine samples are sent elsewhere for testing. Plus there has been talk back and forth between doctors, nuclear radiologists and cardiologists regarding test results. Our doctor thought by Tuesday we should know more. Nothing. Add another 48 hours onto that and our brains were thinking of every possible scenario. The good, bad and the ugly. Whew!    

What now? Moving forward, Jack will have routine clinic visits and labs to make sure his blood counts are still increasing back to the "healthy child" range. Any decrease in counts is a flag that something is going on. We have asked lots of questions about the Neuroblastoma coming back, is there a time frame, how will we know, how is his immune system and so many more. There is no one answer, except we just keep an close eye on Jack for signs and go from there. We knew there are no concrete answers and no rules apply when it comes to cancer. We watch and wait and hopefully it's ugly face doesn't reappear back into Jack's and our lives. I've had my fill! 

We are thankful for:
- well, it's a no brainer-------> CLEAN SCANS! 
- and many other things. Tonight we are emotional drained, but walking around with huge smiles on our face.

Thursday, December 4, 2014

Done With Scans

Whew, it's been a somewhat busy week, with three trips to Omaha. But we're all done now and nothing planned for the weekend. (Except watching a few remaining Aliens and Predator movies.)

Bone marrow biopsy and second MIBG scan went well. Jack was/is a little sore on his back from the biopsy, but is doing good. He also ate like a rockstar. 

His doctor mentioned that if everything is showing up clean, we'll be able to remove his central line soon, and have him go back to school after the break. They'll brief us on the vaccination schedule, as it nears. 

So, not much else. We're glad to be done with running around, and most importantly that all the procedures went without a hitch. 

I can't overstate how grateful I am for the knowledge and technology available to us so close. Seriously... Using gamma radiation to do a non-invasive full body scan...

Wednesday, December 3, 2014


Jack is rocking through all his scans. Yesterday it was a long day at Children's with the CT scan and doctor appointments. The hearing test was good, no additional damage to the ear. He does have some damage, so when he returns to school they will keep on eye on him too see if he'll need some special accommodations. The CT scans always causes some drama. Before the scan, they prepare a delightful 24 oz. beverage containing some liquid contrast one needs to drink 90 minutes before the scan. We didn't get all 24 ounces drank but they still got good pics. (Thank goodness!)

Today it was MIGB scans and we were told to come back tomorrow afternoon for additional images. So, bone marrow biopsy at 9am (be there at 7am) and then MIBG at 1pm. It's going to be a long day and little dude is probably not going to feel so great. I might need to make a quick run to ToysRUs tonight and get a little something special to get us through the day. A little Lego set is sure to brighten the day.

Pic: Jack pointing at the radioactive symbol on the machine. He's a bit like spiderman. :)

Today I'm thankful for:
- scans going good so far. We don't have any results yet, but Jack is being a trooper.
- good weather for our drives back and forth.

Monday, December 1, 2014

Happy Monday

We had a great Thanksgiving weekend traveling and visiting family. We were back home Saturday night to enjoy all of Sunday lounging around watching movies and staying toasty warm. Chase caught a cold in school and Jack is a little sniffy now. I'm sure being in a car next to his sneezing coughing brother might have had a little play in his sniffles. No fever, so that is good! 

Jack has a busy week:
Tuesday: doctor appointment and labs, hearing test, CT scan, Xray and in afternoon we head over to UNMC for his radioactive dye injection. 
Wednesday: MIGB scan at UNMC. 
Thursday: EKO test and bone marrow biopsy. (Bone marrow is a same day surgery, so no inpatient stay.) In the afternoon a tentative appointment set up at UNMC for possible second set of MIBG images. 

Asking for lots of positive thoughts as we take this set of scans and tests. It's scary, exciting and nerve racking. Little dude (especially) and our family has been through a lot in the past 16 months, we all have our fingers crossed for good news. 

Jack on the treadmill today at physical therapy. He was jogging a bit, going 2.3 mph for one minute. He did that twice! Jumping jacks, crab walks and he can get up from the floor now into a standing position. He's getting back slowly to his mobile self.