Hello everyone! We have had a few people suggest we create some sort of website to keep people updated on how Jack is doing. In the whirlwind of the past few days, I have struggled to find time (let alone remember) to keep everyone in the loop, so this should make it a bit easier. Please pass this URL on to anyone who may not know about it and wants info on Jack's progress. I will try to update this site as often as possible, or as anything changes. Thank you for your support!

Sunday, May 27, 2012

Ladies and Gentlemen, we have white cells!

It may be a bit early to make that announcement, but this morning Jack's white blood cell count went from <.1 to .1! I know it doesn't sound like much progress, but this is exactly what needs to start happening for Jack to be able to heal from his digestive issues, mouth sores, & fever. It's also what needs to happen so he can go home. Our nurses said that even the slightest jump can make a world of difference, and Jack was saying that his mouth felt a bit better this morning- even before he knew his white cells had come up a bit.

His fever has been much lower- hanging between 98.9 and 100.6. The antibiotics that he is on seem to be keeping it under control. He has been using his treadmill and walking laps around his pod to stay active, and staying out of bed as much as he can. Even though it has gotten much easier for him to swallow liquids, he is still too sore to eat. As long as his white cells keep growing that shouldn't be a problem for much longer.

Jack's chemo schedule for this hospital stay- he's finished!
Jack also finished his last round of chemo! He had been receiving a type of chemotherapy as an immunosuppresant to help the graft come in slowly and to prevent graft vs. host disease (GVHD). He got his last dose yesterday and even though one of his nurses wrote in his chart that he was handling the Methotrexate "like a rockstar", he is excited that he doesn't have to do that anymore.

For now, that is all the news we have to report. Hopefully his counts will keep coming up and our next update will have an estimate for when Jack will get to come home!

Wednesday, May 23, 2012

Day +8

It's Day +8, and up until today, Jack was keeping things pretty boring around here. He had been experiencing stomach issues and fatigue, but all in all it was pretty uneventful. Today however, Jack spiked his first fever of 101.2. The doctors and nurses have been expecting this- they say it happens to almost ALL transplant patients. Jack is feeling pretty rotten today. He's exhausted, and in addition to the fever and stomach issues, he has developed some swelling in his mouth that is making it difficult and painful for him to eat. This is also a side effect from the chemo that is pretty normal, so the nurses and doctors are prepared for it. They've given him pain medicine as well as Tylenol for the fever. Hopefully that makes him feel a bit better. They said that this is likely how he will feel for the next 1-2 weeks, or until his new cells en-graft.

At this point it's a waiting game. The fever isn't necessarily from infection, it could just be his body reacting to what it's going through. Ideally, there is no infection and the fever goes away on it's own, but just in case, they have him on antibiotics. The most important thing at this point is that Jack stays active and keep his positivity. He has a great big group of people wishing him well, praying and sending positive thoughts his way- we are all grateful for that! We'll keep the blog updated as things progress.

Tuesday, May 15, 2012

Day 0!


 Here we are ladies and gentlemen, Day 0. The long awaited transplant is complete! This morning around 8:00, Jack's nurses began to prep him for transplant (Benadryl, Tylenol, LOTS of IV fluids, oxygen, heart monitor, etc). At 9:15, his cells arrived. The stem cell infusion process took about 30 minutes, and was as simple as hanging two bags on his IV pole. Sometimes, patients feel side effects from the preservative they use to keep the cells viable, but Jack felt pretty great!

Here are some pictures of the process:
Jack's new cells- frozen in liquid nitrogen
Confirmation of the cells
Close up- they are in the red bag!

Jack "getting ready" for his transplant!
Jack getting his new stem cells!
From here, Jack's 100 days begin. There are some differing opinions as to how much longer his hospital stay will be, but we really wont know for sure until we see how his counts progress. A safe bet would be 4-5 more weeks. During this time, Jack will be taking lots of medications- immunosuppressants, anti-virals, anti-fungals, and anti-naseua, just to name a few. The goal is to get him out of here and let his donor's cells take over without incident. We were told that it is VERY common for patients to spike some sort of fever while they recover, so everyone, Jack included, is being diligent about washing hands, cleaning surfaces, etc. Obviously, we all want to avoid anything resembling what happened last hospital stay (pneumonia, flu, strep, etc). After he goes home, he will need 24/7 support for the remainder of the 100 days, just to make sure nothing weird happens. He will need to make daily trips back to Mayo at first, but as he progresses those trips should become more and more infrequent.

While Jack still has a long road ahead of him, it's incredible how far he has come in the last 3 months. He has been diagnosed with AML, gone through 3 rounds of chemo, spent over 60 days in a hospital, battled pneumonia and the flu, achieved a complete remission, and received his donor's stem cells all with a smile on his face and a positive attitude to share with everyone around him!

At the Stem Cell/Marrow registration drive last weekend, we were able to add 150 people to the registry! Thank you to anyone who made it out either as a volunteer, potential donor or supporter. Again, if you missed the event and would like to register, please visit Marrow.org to sign up (there is a link at the top right of the blog). One of the coordinators for  Be The Match has created a promo code that you can enter so that there is no cost for you to join the registry. The code is Jack. If you are not on the registry already and are eligible to join, please consider being added. There are so many patients in need of a transplant, but only about half of those in need will actually receive one. I can't imagine what it must be like to be in their shoes, and to go through all this without that life saving option. Although we may never know if one of the people who signed up this weekend (or will sign up soon) is a  match for someone, it's nice to know that there are 150 more possibilities for patients everywhere. Thank you!

Tuesday, May 8, 2012

Day -7...Guess who's back?

Hello everyone! Jack checked back in to Mayo yesterday, and had a procedure to insert a Hickman catheter into his chest. This is where Jack will receive both his induction chemotherapy and his bone marrow transplant. The procedure went well and he checked into his new room (4E65). When I came up from the surgery waiting area looking for his new room, I saw many familiar nurses. They all remembered Jack and were excited to see him. They are even working on getting him a bigger room with more sunlight!

Jack started chemo today, and is getting a dose of Busulfan every 6 hours for the first 4 days, and then one dose of Cyclophosphamide for the next two days. That will bring us to day -2. Day -1 will be Jack's rest day, and he will receive the donor's bone marrow on May 15th, or Day 0. From there, he can expect to be in the hospital for 3-5 more weeks while we wait for his new cells to en-graft. Interesting bit of information- over the next month, Jack will have 3 different blood types. Right now he is AB negative. After chemo, while his blood counts are low, he will receive O negative blood. Once his new cells en-graft, he will produce A positive blood (the donor's blood type). This is the type of blood Jack will produce for the rest of his life!
That's all of the updates we have for now! Don't forget if you are in the Phoenix area and would like to be added to the national donor registry, our stem-cell drive is this Saturday from 11-5 at San Tan Flat in Queen Creek.

I almost forgot! The weekend before Jack checked back in to the hospital, his doctor cleared him to eat at restaurants and go outside without a mask on! He LIVED it up, and at a restaurant for every meal for 4 days, and even went golfing with his dad! It was a great weekend :)