This blog is meant to give friends and family updates about Jack, and also give you a place to leave Jack and the family an encouraging word or two. Thanks for stopping by!
I could not be MORE excited as I type this blog post.
That is because today is the LAST day of radiation! Jack showed his beautiful smile this morning as he was finishing his therapy, and showed off the AWESOME countdown picture of 1 left that Mary made for him.
It's a beautiful rendition of what has kept us all going through this...
Unfortunately, we had a minor setback this week, but we are still seeing the end of the road!
Dr. Natia decided to scale back a tiny bit on the intensity of treatments, which, as you may have guessed, means that we will be adding on 3 days of radiation treatment. So, now, our last one will be Monday instead of tomorrow (Wednesday). Although we were a little bit bummed, we are still excited that after Monday (which is so close!), Jack can fully focus on his therapy sessions, resting and getting better!
We are meeting with the Rehab team tomorrow morning to find out their detailed thoughts, and their plan for the next couple weeks. They have told us that we should plan on staying put for the next 3 weeks (ish), but it will of course depend on Jack's progress.
Tiffany will be coming back next week to spend Thanksgiving with us, and we are looking forward to all being together again.
Love to everyone, and continued thanks for everything.
April
HOOOOOO - RAY! (says Jack as he smiles at the camera yesterday morning)...
Next Wednesday will be a day of celebration for SURE - although we will miss all the sweet people at Winship Cancer Center (a special shout out to our tech Greg who has made things so much better for all of us!)
In other news...
We have moved! Jack's new home for the next couple weeks is in Room 365 in the Rehabilitation part of CHOA. The room is cozy, we have a little more space, the bed is comfy, and most importantly, they still serve milkshakes for lunch and dinner. YAY!
It amazes me... I didn't think there could possibly be more sweet, genuine, loving nurses other than all those we had already met through the Aflac Cancer Center, but guess what, they are all over the Rehab ward too! We are feeling right at home and well taken care of, and it helps that...
Jack is doing great so far in rehab! Yesterday was only Day 2 and he is already making improvements. The therapists are teaching us a lot about how we can continue to help him progress outside of therapy, which will be super helpful once we are home.
Jack has had a great attitude about it, and is working hard. We can tell he REALLY wants to get back to where he was before all this began.
The docs in Rehab will meet with Mary today (Friday) and let her know their recommendations as far as how long we'll stay there. Will update soon.
We hope everyone has a great weekend! We certainly feel all the support and prayers daily, so keep 'em coming!
Man, what a game!
So, we didn't make the trip to Ann Arbor, but we did our BEST to bring Ann Arbor to Jack in Room 184! We wore all of our favorite Michigan swag, got awesome "stadium like" food from the hospital cafeteria (their onion rings are sooooo good!), snuck in a little cooler (shhh...), and watched Michigan battle it out in the game of the weekend with 3 overtimes and a final stop to Illinois attempt at 2 extra points.
Even Jack was decked out in spirited gear, & cheered the Wolverines to victory. Check out our family pic!
I only wish we had a video camera going in the room when we won. Victory dances all around. :)
Overall, Jack felt pretty good all weekend. He is still battling some pain every now and then, but they didn't find any new growth or bleeding from the CT scan, so they are just adjusting his medicines until they find the right combination that works.
He is definitely talking better and better each day, and actually had the energy to get onto Charlie yesterday for "making annoying noises". Ha! It was just like old times. However, therapy is still a must, and in fact, the head of the CHOA rehab center came and assessed Jack this morning, and it looks like he'll be doing...
Inpatient Rehabilitation starting this week. He, Dr. Claire, Dr. Natia and the team at CHOA have agreed that Jack would probably be better off getting admitted to inpatient Rehab, while he is still undergoing treatments. By being admitted, he will benefit from 3 hours of therapy every day (as long as he is feeling well), with a combination of 2 Occupational Therapy sessions, 2 Physical Therapy sessions & 2 Speech Therapy sessions.
They explained to us that starting him while he is still undergoing treatment would be best, as his muscles are at risk of getting weaker in the coming weeks. Also, he will see quicker results if he remains at the hospital, rather than just coming for day sessions, which makes perfect sense to us.
With all the paperwork and logistics, he probably won't get transferred until Wednesday or Thursday and will be there for a couple weeks. We will update once we are settled in our new, temporary room!
We continue to be showered with love and support and prayer, and we can't thank you all enough!
The big hit from last weekend was the ice cream cake Joyce with Transfiguration dropped off for Jack on behalf of Father Pat & the congregation at church. It was cookies and cream, with chocolate cake, and was from... you guessed it - Bruster's! Jack was sweet enough to share with all the nurses and other patients in the Aflac Cancer Center - yum!
We are all so excited that Tiff got in last night safe and soundly. We are excited about a weekend, hopefully at home, where we can all spend lots of time together.
But, as you can guess, that means...
We aren't making the trip to Michigan this weekend. Jack is actually still in the hospital, as they can't quite figure out how to keep his pain under control for an extended period of time. Anytime they try a pain medication, it seems to work for a little while, but then stop.
Last night, the pain got bad enough that they took him in for another CT scan. I will update later on any new findings...
The good news is that he is down to less than 10 radiation treatments left! Here is a cute pic taken as we hit the 10 milestone on Wednesday.
The hope is for Jack to come home today or tomorrow, so we can all hang out, watch football, cook great food, and be able to enjoy it knowing Jack is feeling better.
Oh, and the physical, occupational and speech therapists all came to assess Jack during his stay this week, and the consensus is that after treatments are over and he is feeling better, he will benefit SO MUCH from inpatient or outpatient rehab at CHOA. We all were excited for them to see him, and all be very confident he'll make tons of progress after treatments. Oh - and they gave us a few ideas of things we can do at home to help in the meantime!
More to come soon - keep the prayers coming!!
April
Sorry I have taken a short break from the blog, but we have been waiting to share as much information as I could. Here we go...
We had a slight setback over the weekend.
I have shared previously that we are all so thankful that Jack has, for the most part, been out of pain so far during radiation. Well, on Sunday morning (early!) that seemed to take a turn. He was complaining of headaches at a 10 (on a 1 through 10 scale), and neither pain medicine we had on hand seemed to help in the slightest.
So that afternoon... Jack and Mary took a trip to the ER. The put him on morphine, which always helps the pain and lets him catch up on sleep. They did a catscan which didn't show any obvious changes to the tumor, nor anything wrong with his shunt (thank God!). And they did some blood work, which showed that his platelets were, unfortunately, too low to let us go home.
They did a platelet transfusion Sunday night, and Monday afternoon, and will be doing one again most likely tomorrow. They are also starting him on a pain patch and some oral morphine while in the hospital to make sure it's working before they send us home. The hope is to go home tomorrow!
Other challenges like his speech and his walking seem to be improving slightly each and every day. We are hopeful that this continues as we near the end of radiation.
Oh, and as I called Tiffany on Sunday to let her know we were head back to the hospital, she requested that we channel her love for Halloween and dress in costume to go hang with Jack.
So... my friend Regina and I became hippies!
We know, it's not a huge stretch for us, but was all we could pull together at that late notice. Tiff, this is for you! :)
It's amazing that Jack still smiles for the camera, regardless of a Level 10 headache! :)
The main thing we are praying for, and that we ask you to pray for, is that the pain can be managed by us at home, and that his platelets stay high enough that we can all feel great about making...
A trip to The Big House this weekend!
We are so blessed to have the opportunity to go as a family - all 6 of us! - to the Michigan vs. Illinois football game this weekend. For those that don't know, all 4 of us kids (Tiff, Jack, Charlie & I) were born with maze and gold piping through our veins, and I'm pretty sure our first words were "Go Blue". It has been a dream for a while to see the stadium and attend a game, and we are all praying that Jack is feeling well enough to make the trip.
Either way, Tiffany is coming in town Thursday night and will be spending the weekend with us... and it goes without saying, but Jack is super excited to see his big sis again!
We are certainly feeling loved all the time, and Jack is still receiving notes, and calls, and videos and emails from incredible people, all the time. In fact, one of my favorite musicians, Brett Dennen, sent over a cool video message & some music to Jack. Enjoy!
We only have 11 treatments left, and we could NOT have gotten this far without all of you!
