Thursday, February 27, 2014

Transplant - Chemo Day 1

Today was the second longest day in history... only because last night was the longest longest day!
Last night -- vitals every four hours, the pump going off and beeping, Jack going to the bathroom, IV meds, and preping at 5AM for the 6AM chemo... am quite certain I was up every hour. By 4AM I was ready to throw the pump out the window and pay good money to anyone who had earplugs.

Chemo went well today, no nausea. Fingers crossed that we continue on this path for the next couple of days. A pretty uneventful day-- but I'm told that's what they like.

Here's pics of our palace and our view over looking the city.

This afternoon since his counts are still high, we are able to leave the floor. The Shine Circus is in Omaha this week, so the clowns stopped by and brought plenty of cheer and silliness.

Jack's taking all sorts of meds... way more then what we have ever taken. Only two or three nausea meds, the rest are preventive and protective meds for his liver, stomach and who knows what else. We also swish four times a day to help prevent mouth sores.

I'm not sure what was going on this afternoon, but the medications are definitely mood altering. Jack was sad, happy and crying for a few hours here and there. I asked- it's common. So we just took a little time out and talked about what's going on and how he's feeling. It got better after dinner. I'm hoping as we get used to new hospital, staff and treatment, everything will start to smooth out.
Jack's eating really well, he's gained a pound - I'm sure it's half fluid and half actual weight from eating good. Looking forward to a quiet evening and hopefully a bit more sleep tonight.

Today I'm thankful for:
- coffee.
- being able to roam around the hospital a bit.
- great nurses today and tonight. We had them both yesterday and was happy to see them back tonight. 

Wednesday, February 26, 2014

Checked in at UNMC

We're all checked in -- Room 7458 is our new home for the next few weeks --- 7th floor looking down at the helicopter pad. Had quite the day of what I would call "information overload," lots to absorb. I would  compare our consultation similar to a prescription drug commercial... you hear it all, the good, bad and ugly. :)  
It's great here-- different from Children's, but we like it so far. We took a peek in the gift shop, Jack was wanting to see if there was anything of interest -- nothing really for kids except stuffed animals, which he said no way. 

Today to pass a bit of time we explored Nebraska Furniture Mart (Disneyland of the Plains.) We had fun looking and wishing. :)
Here's Jack and a Halo guy.

Plan for the week -- today is hydration. They'll hook him up to some maintenance fluid through out the night. We start chemo at 6 AM tomorrow. 
Buslufan for four days, a day of rest, Melphelan for one day and then next Wednesday is transplant day. 
We're told that the kids usually do pretty good with the chemo part, it's about 7-10 days after when he will starting to feel crummy. We'll just play it by ear and see how it goes.

 I'll post pics of our room tomorrow. We have it all decorated and it's looking a bit more homey.
Today we're grateful for: 
- an easy and carefree day for Jack.
- great doctors (half the doctors split their time between here and Children's) and nurses.
- Chase and Tibor living it up at home without us -- we'll see how long they can eat frozen crap food.
Cook boys, cook. You can do it! :) 


Tuesday, February 25, 2014

It's Go Time, Transplant Treatment Starts Tomorrow

We're cleaning up the house and packing for the extended visit at UNMC.

Consultation with the doctor in the morning, checking in and hydration in the afternoon, followed by a shot of chemo running for a few days, staring on Thursday. 

Big news around here is that a Raising Canes opened up a mere minute from our house, and a few days ahead of schedule to boot, so we took advantage of that and had some fried chicken for dinner. 
Jack ate well, a strip and a half, garlic bread, fries and a lemonade. Plus Runza for lunch, and cereal for breakfast, so at least he'll be going in well fed. 

Wish us luck!

Monday, February 24, 2014

Ready for Transplant

We heard from UNMC this afternoon that Jack is ready for transplant at UNMC, and when I mean ready --- I mean labs on Tuesday and consultation and admitting on Wednesday. Wow! I knew we were on a time sensitive schedule, I guess they're ready to get the ball rolling.

How does Jack feel about this long stay? He's known about this part of the treatment for sometime. Also, as bad as it sounds, he's already spent a fair amount of time in the hospital -- so it will be new/different experience, but not really. We'll get a more detailed outline of events that we'll share in the next few days.

We did a drive-by by the new Raising Canes on 27th and Cornhusker and they're opening in three days! Jack is a bit annoyed that he's going to miss the grand opening. He's planning a talk with Dr. Gordon and requesting a day delay in his treatment so that he can be the first in line. Not sure that's gonna happen.

So... if you're wondering why Jack is posing against a tire in our front yard -- it's a prop that Chase and his friends are using. They're filming a scene out of a book they're reading. Extra credit I think.. but who knows.

Today we're thankful for:
- Jack spending a wee bit of time outside with Chase and his friends.
- starting Phase 2 of 4 of treatment. It's a pretty major part of the treatment.
- The Voice is starting back up tonight! Jack and I are huge fans. 

Sunday, February 23, 2014

Busy Weekend

Our weekend started on Friday with a fantastic fundraiser/soup cook off by my NDE and VR coworkers. 
Jack and Sarah were there, and once Jack found the lottery tickets meant for the guests, he was everyone's best friend, charming them out of their lottery winnings. The gathering was fantastic. It was nice for people to see and meet Jack, and it was a great opportunity to socialize and get to know coworkers from our "sister" agency. 
Many, many thanks to organizers, "caterers", and everyone else who participated, donated, or just joined us for an excellent lunch. 
And wow, it wouldn't be right not to mention all of the amazing soups cooked up by everyone. 

Jack was not in the mood for soup, but he enjoyed some cupcakes when he got home. 

And later in the evening is about when the trouble started...
His catheter had been bothering him, but that was par for the course. It would be coming out on Saturday, so we were just waiting it out. But, before going to bed, his pee was dark brown, almost bloody/pink. Naturally, that can be cause for panic, but we gave him a juice to drink and a glass of water to see if it will clear up. 
Fortunately it did, quite a bit, but it was pretty late by the time we got to check it. And his morning pee was nice and normal looking, which was a great relief. 
I suspect the brown sample was due to him not drinking much, and/or pee sitting in his catheter bag for a while. 

The catheter did come out that (Saturday) morning, we let Jack pull it out, and it wasn't a big deal...
Soon, we were on the road to his grandpa's house, an hour and a half north of us. 
He started having a bowel movement, for which we stopped four or five times before we got there, but nothing came out...
He continued rushing to the bathroom all the way into the evening, in pain, and with the familiar "gotta go" urgency, but again and again, nothing would come out. He was pretty miserable. 
So, a little dose of milk of magnesia was given, and luckily took its effect quite rapidly, and with great success. Think "Dumb and Dumber" scene where Harry goes to the bathroom...

With his catheter out and BM complete, Jack ate a bowl of Mini Wheats, went to bed and slept great. 
Our Sunday was great, he ate like a rock star, must be grandpa's cooking, and played with cousins there and at my sister's house. 

Tomorrow, we'll be starting twice a daily stool softener/laxative, to keep things moving. 

Nothing really on our schedule treatment wise, we're waiting for surgery to OK him to proceed with the transplant. 

I'm grateful for:

- the first annual Souper Bowl ;)
- his pee being clear,
- milk of magnesia, and other tried and true medicines,
- playing with cousins
- Mini Wheats, Sloppy Joes (loosemeats), Wendy's chicken nuggets, Melanee's brownies, popcorn, Cheese It crackers, and anything else my little Starvin' Marvin may eat tonight.  

Thursday, February 20, 2014

Busy, Busy

The past two days have seen more excitement (not sure if that's the word) than I can handle.

On Tuesday evening, while Jack was chomping on bacon, some small pieces got stuck in one of his back teeth. He grabbed his handy-dandy flosser and was successful at both removing the bacon bits and cracking his tooth in half. (I seriously have no idea how this is possible.) A few minutes later, he was showing me chucks of tooth that he was pulling out. 
We called the dentist first thing Wednesday morning and by noon he was sitting in the dentist chair, gums numbed, and getting the remaining shards of tooth pulled. I guess chemo is hard on the teeth and can cause all sorts of issues. That was yesterday.

Today, the little dude was still having urgency and frequent urination issues. It's been a week after surgery and we didn't think it should still be an issue. We thought maybe he had a urinary tract infection, or something along those lines. We called the doctor, and they had us come up for an ultra sound. Long story short, bladder needed a bit of rest, and they put a catheter in that needs to stay in until Saturday. Jack was rather mad at me and told me it was all my fault for calling the doctor.. which gave the doctor a little chuckle. Not a pleasant experience at all. Whew! This one definitely earned a trip to Toys R Us.

But on the positive note, doctor said Jack looks great, healing up super good and we don't need to see him on Tuesday.

Fingers crossed that the rule of threes is just hocus-pocus. Friday will be awesome, right?!

Tuesday, February 18, 2014

Getting Better, I Think

I think we're making progress with surgery recovery but I'm not positive. 
Jack is not in pain, but he's pretty constipated, or something is a bit off with his bathroom visits. 
But at least things are moving so hopefully they'll get into a more usual rhythm. 

He took a two hour nap this afternoon, for which I'm grateful. He hasn't slept good in the past few days between pain and bathroom runs. So, we'll let him stay a bit later tonight, and maybe pack another snack in him. He hasn't eaten the best in the past few days due to constipation. 

One of his teeth cracked tonight, so he'll be making a trip to the dentist hopefully tomorrow. 
It doesn't hurt, thankfully, so he should be able to wait until tomorrow at least. 
I don't think it's related to his treatment, though I don't know. I blame Halloween, Christmas, and Valentines day traditions. There is only so much candy I can throw away before they start noticing. 

No photos today, but we did take a nice walk around the block, with Chase too, who was instrumental in getting Jack motivated and out of his beanbag chair. 

Monday, February 17, 2014

Still a bit sore, but doing good

It was a long, but fun weekend at our house, Jack was up quite a few times every night-- sore tummy and restless. We'd give him more pain medicine and he would be good to go. During laparoscopic surgery, they use a lot of air to look around and his tummy is still swollen and tender. Slowly but surely, every day is a bit better. 
We did go outside a little today and enjoyed the nice weather. 

Jack is still talking about his visit to school. He was pretty sore, but wanted to see his friends and join the Valentine's Day party. We were only there for 45 minutes and he is excited to go back. Hopefully before we go to transplant, we can make some more visits to school.

Follow up with surgery on the 25th and then we'll see what's next. 

Today we're greatful for:
- no fever or infection after surgery.
- Jack's sense of humor returning-- he's starting to feel a little better.
- long weekend -- Happy President's Day! 

Saturday, February 15, 2014

Went To School For A Valentines Party

Jack is recovering fine from the surgery. 
He's still in a bit of pain, and is walking hunched over, but he's starting to jump around a bit, which is a good sign. 
He's getting handle on going to the bathroom too which is great. It was touch and go yesterday with that...

Jack and Sarah went to his school yesterday, and Jack was *very* happy to see his friends, and they were happy to see him. 
They exchanged Valentines and made crafts. 

Here is a little pic of him decorating his heart:

Today I'm grateful for:
- Jack seeing his friends and teachers, and having a super nice time. 
- Good Luck Charlie marathon. It's a nice family show without unsupervised, independently wealthy tweens full of snappy comebacks. 
- Going to the bathroom. Retention (not being able to pee) is not something to mess with. 

Thursday, February 13, 2014

Home, Safe And Sound

Jack was released around 3 PM today and in good spirits. 

He's a little but sore from the surgery, but we have some pain meds that take the edge off. 

He was actually able to go to Toys 'R Us and get a couple of toys. That's always a good way to get him stretched out and walking. 

Today was the day the puppies visit the kids at Children's, so here's a pic of Jack and Roxie:

We're taking it easy now and watching Olympics. 

Wednesday, February 12, 2014

Surgery Update

Surgery #5 -----> Sucessful
Tumor #2   -----> Removed

Jack is doing good this evening. He's drinking and ate half a gram cracker. (6:00 PM)
Surgeon removed the tumor - measured about 4cm and was the shape of an egg. It was nestled quite comfortably between his pelvic wall and rectum.  It didn't grow or spread, so that is good.... I mean GREAT news! Jack has four teeny-tiny incisions and a larger one in the same place (below the bikini line) where they removed the first one. He's one tuff cookie I tell ya. 

If the pain stays under control, we'll go home tomorrow afternoon. Recovery time is 10-14 days and then we're off to transplant at UNMC. 

Pic - Tumor bagged and ready to be sent to lab. They bag the tumor while it's still inside him.

Today I'm grateful for:
- Tumor not spreading.
- Jack so far doing great, but I guess it is #5, the nurses are starting to recognize us in the surgery area.
- Tibor and I staying positive. It's easy to let the roller coaster of emotions get to you, but we are strong together and not letting the stress get in-between us. 

Monday, February 10, 2014

Monday Update

It feels like the weekend updates comes around so fast and I think to myself, where did the week go?!
Tibor, Jack and I (I guess Chase was to cool to join us) went and saw the Lego movie on Sunday. It was great! Jack and Tibor were chuckling through the whole thing. Highly recommended.  A beta version of some game was released over the weekned, so the boys were playing games all day and night. Other than that, nothing else to report.

Today, Jack and I ventured over to Union Bank to meet up with some friends from the Magic Moments --- they put together a book for us and had a few other surprises. Oh... and don't forget some mouth watering, fresh out of the oven, yummy in my tummy, chocolate chip cookies. They were magnificent! Jack ate one while we were there and requested two more with milk later on in the day. The book is very cool and we will never forget how special our day (and the weeks leading up to it) was. Tibor and I appreciate all the hard work everyone put into making Jack's magic moment truly magical!
Thank you Jill -- you did a great job putting the book together!
A very special thanks to Dan and Carl -- Jack thinks you two are the coolest cats ever and loved every moment you spent with him today. You warm my heart with all your kindness and love you guys have for him. He will always be your little buddy!

Here are some pics from our book.

Today I'm greateful for:
- little dude is looking good, I think he may be at 45lbs now.
- the two families I know (and the hundreds I don't know), how you have made it mission critical to get pediatric cancer awareness out there. It has inspired me and has my brain turning.
- my boys and husband. You make me smile, laugh, roll my eyes and maybe even sometimes test my patience. You guys are the greatest!

Friday, February 7, 2014

A Little Change Of Plans

A little delay in our plans...

The scans from the past two days indicate that a little tumor still remains in his pelvis area. (About 3cm. in size)
The surgeon has scheduled us for a surgery to remove it on Wednesday, so that will delay the transplant procedure. 

Jack is not overly upset, he gets to have one more surgery bear. 

This weekend we plan on staying pretty active, maybe catch the LEGO movie, maybe make a snowman. 

I'm actually happy we get some more time before the transplant, as that gives us more time to fatten him up. 

Jack and Sarah made a surprise visit to my work today and brought some cookies to boot. 

Here is a collage of pics from Thursday:

Today, I'm grateful for:
- surgeon catching the hiding tumor,
- oh yeah, the scans showing his bones are still clean, and there is no spread beyond that one tumor,
- having more time to get my little Hansel fattened up
- doing some light yoga and weights with him. 

Wednesday, February 5, 2014

Tests And Scans

Today was day two of three of running tests and scans in Omaha. 

Jack had a pulmonary test yesterday to see if there was any chemo related damage to his lung elasticity and apparently there is not. So that is great. 

He also had EKG test, but that just got sent to the doctors. Maybe they'll discuss that with us on Tuesday when we go in for a consultation. 

Today we had an MIBG scan, and they'll have us repeat it tomorrow to get a more detailed look. He also has a CT scan scheduled for tomorrow. 

Also today he had an audio test, and there is some hearing damage due to the chemo. It's not as bad as it could be, and he doesn't require hearing aids. He is basically at 92-96% normal hearing. In a crowded room he'd have a hard time telling apart higher frequency sounds like S, F, or Th. 

We also met with a nutrition specialist so we can all prepare for his nutritional needs for the next phase of treatment. (The transplant, where they'll give him a strong dose of chemo, and then give him back (transplant) his blood they harvested a while back. That starts next Wednesday.)

Here is what a pulmonary test chamber looks like:

Today I'm grateful for:

- clear roads. Thank you Nebraska dept. of roads, or whoever is responsible for keeping the interstate clean.
- LEGO blocks.. They're fun to get, fun to put together, and fun to rebuild over and over. 
- hearing damage not being any worse. (Cisplatin, that's the chemo that does the damage, he had two cycles of it, and we're hopefully done with it.) 

Monday, February 3, 2014

Schedule for this week

We had a great weekend! A Sunday visit with family, a great lunch at Lazlo's and we kinda watched the Super Bowl. Since we're such big sports fans around here, we decided to go against the grain - and cheered on the Sea Hawks... and look, they won!

Jack is all healed up (well sort of) and pain free. He and Chase are back to running around the house like cops and robbers. I always joke that the weekends to Jack and I are no biggie... oh look, another day we're home, Yippie!  The weekends adds more bodies in the house, more dishes, more cooking and maybe, sometimes, arguing. Not Tibor and I (we're angels) but the boys have their bouts here and there. They usually work it out, but if it gets out of control, the threat of no screen time if they don't shape up is a sure way to end the mischief.

Our schedule for this week - all appointments are at UNMC.
Tuesday: Labs, pulmonary function test, EKG, and he'll get injected (through his central line) with radioisotope.
Wednesday: Hearing test, MIBG scan and meeting with a dietary specialist.
Thursday: CT scan, possibly more MIBG scans.

We have an admitting date of next Wednesday, February 12th to start the transplant. (Consultation with the doctors the day before.) That means we have one more weekend at home before the big stay. We need to come up with a great plan.
These are Jack's ideas:
- see new Lego movie - comes out on Friday so perfect timing!
- stay up all night playing the PS4 until he falls asleep in his chair while playing. (Dad does not approve!)
- drive to Texas, or see the Eiffel Tower, Arch in St. Louis or Statue of Liberty in NY --- he can't decide which.

I'm thankful for:
- great weekend. And the house is still clean today!
- Root Beer (Jack's beta fish) doing good. It was touch and go for a few days. He's all good now.
- seeing Jack run around and horse around with Chase.
- how about them Seahawks!?