Exciting Updates!

Jack had all of his 1-year check ups, and everything is great! His bone marrow biopsy results show no leukemia cells, and he has almost no evidence of graft vs. host disease. He broke all kinds of hospital records with his lung function, grip tests, etc. The doctors are really pleased with how well he is doing, and he feels great!

Since our last post a few things have happened:

First, Jack had a bout with Shingles which is really common in post-transplant patients. He started one medication again and will continue that for a year to prevent any more outbreaks. The doctors were not too concerned about this at all. 

Second, while playing soccer a few weeks ago, he tore his MCL. Luckily he didn't need surgery, he just had to walk around in a brace for a few weeks. Now he is doing physical therapy and things are progressing well. He should be back to normal in a couple more weeks.

Our third (and most exciting) piece of news is that we found out who Jack's donor is! It's not very often that donors and recipients get to contact each other- often one or the other wishes to remain anonymous. We are SO GLAD that this was not the case for us. Her name is Mallory, and she is an amazing young woman from Maine. It's been totally surreal to hear her point of view and to hear about her experiences. Since she didn't know anything about Jack at the time except that he was a 23 year old male with Leukemia, she nicknamed him Sebastian instead of referring to him as her "bone marrow recipient" because it felt more human to her :)

Mallory had only been on the registry for two months when she got the call that she may be a match for Jack. When she learned that she would need to have surgery to donate, she didn't hesitate at all. She even said the process was not as bad as everyone makes it seem. It's been an absolute pleasure getting to know Mallory, and hopefully we will get to meet her in person someday!

Unless something major happens, this is going to be my last blog post. Thank you to everyone who followed Jack's journey for the past year and a half! We appreciate you!

Anniversary!

Hello there everyone! Can you believe it's been exactly a year since Jack had his transplant? We can't either!

Since the last post, Jack has been doing great. Not only is he playing softball and soccer, but he recently signed up for flag football and does a boot-camp style workout 4 times a week. Jack is off all but 1 medication, and he should be finished up with that one shortly.

We spent Jack's transplant anniversary flying back to Arizona from Sioux Falls, SD. This past weekend, we drove from Phoenix to Sioux Falls, stopping a few times to see family along the way. Jack and I both had a relaxing trip and enjoyed a fun vacation with great company. Thanks to everyone who entertained us or let us stay with them. We had a great time!

Over the next two weeks, Jack will undergo numerous tests- a stem cell transplant can be difficult on a person's body, so doctors will test Jack's lungs, heart and bone density to make sure everything is normal. They will also run a bone marrow biopsy to confirm that the transplant is working as it should. Jack will also be able to release some information about himself (name, email, etc.) to his donor, so that she can get in contact with Jack if she chooses to.

I will update the blog once we get all of the test results back. Until then, thanks again for the love and support!

2013 already?

Hey there everyone!

It's been quite a while since my last update and in this case, no news is good news :)

Jack has been progressing through his post bone marrow transplant treatment quite well. His doctor has started cutting back on his anti-rejection medication and if everything continues to go as planned, he might be off ALL medications by summertime!

Jack has gained back all of the weight he lost while he was in the hospital and has been playing soccer and softball again. He still can't wear contacts so that was challenging for him out on the field at first, but now he has adjusted to the new field of vision.

Life is starting to return to "normal"- or as they call it in the post bone marrow transplant world,the "new normal". Although his treatment and recovery aren't finished yet, Jack has done everything his doctors expected and hoped he would do.

I try not to get too touchy-feely on the blog, and I usually try to keep it pretty brief, so this next  part might not be what you'd expect- but here it goes.

I think it's natural to pause and reflect on the past year as you begin a new one, and throughout the holiday season Jack and I both took some time to do that. While there were many things that we thought of, what surprised us the most was how emotions and events that seemed overwhelming at the time have become distant memories. For instance, I truly cannot remember how terrifying it must have been for us while we waited for diagnosis. Something that we haven't shared with many people was that the doctor Jack saw before going to Mayo told us that Jack likely had an incurable condition. I can't remember the emotions we felt while we waited to see whether Mayo would confirm that diagnosis or not. I can imagine it was difficult and scary, but I can't remember how it felt.

Similarly, Jack has pretty much blocked out the time in the hospital when he developed pneumonia. That was a rough time for him; constant pain, difficulty breathing without an oxygen mask, the inability to get out of bed without assistance- at one point ICU nurses were coming into his room throughout the night to monitor him and determine if he needed to be moved to the ICU. Yet, he doesn't remember most of it. It's amazing what our bodies and brains do to help us cope.

What I DO remember, is how amazing Jack has been through all of this. He told me that he never- not once- questioned whether or not he would survive this. It was just a matter of what he needed to do to survive. Every day I am reminded that I am married to an amazing man, who faced this disease head on without wavering, without doubt, and without fear. For many people, it can take years to see traits like that in a person they love, and while this is not the path I would have chosen for us, I am thankful that I learned this about Jack so early.

Another thing we both remember, is the many people- from every corner of our lives- who came to our aid. Whether it was a call, card, Facebook message, email, visit, empathetic ear, hug, tissue, prayer or thought, we appreciate all that you did for us. We are blessed to have the huge support system that we have had through all of this.

We also remember that we have so much to be grateful for. We are grateful that we live so close to such a great hospital, with an amazing staff of medical professionals who are the best in their fields. We are grateful that we both had/have jobs that could and would accommodate our crazy schedules.  We are grateful to have friends that fielded calls at random hours when we needed to talk or who visited at just the right time. We are grateful that we both have amazing families that were so involved in Jack's care, well-being and life. Lastly, we are grateful that somewhere out there, a young woman was willing to undergo surgery to give a complete stranger the bone marrow he needed to survive.

Overall, it has been a difficult but enlightening year, and it has taught us so much about the generosity of strangers and the value of friendship and family. It has also taught us so much about ourselves and each other, both as individuals and as a couple. Thank you to anyone who had a hand in getting us through this past year- you all have been amazing. Here's to a happy, and HEALTHY 2013 :)

Day 104

It's been quite awhile since our last post, and although many of you have heard the good news, we thought we'd share here just in case. Jack's blood numbers have been holding steady for awhile (low, but not alarming) so they did all of his day 100 tests early. His lung function tests came back great and his bone marrow biopsy came back completely cancer free- and 100% female! That means his donor's cells have made themselves at home. Jack also got his Hickman catheter out last week, and it left quite the hole in his chest. It's still healing, but it looks better each day.

Before

After

To celebrate Jack's day 100, and to thank all of the volunteers who helped at the Be The Match registration drive, we went to a Diamondbacks game on the 25th. Even though the D-backs lost, it was still a lot of fun. 

The next few months will still be filled with doctors visits and medications, but those will slow down even more as we move on. His hair is starting to come back, and he is feeling much better. He even has a softball game scheduled for next week!
Things are starting to settle down quite a bit, so there won't be as many blog posts in the future, but we will update if anything changes or as we pass milestones along the way. Thank you again for all of the ways you have supported us for the past 6 months. We are truly blessed to have such a large support system around us. Thank you!

Some Exciting Developments!

This week, Jack "graduated" to one trip back to Mayo per week! This is great news, but surprisingly not the best news we heard this week. Jack also asked his doctor if he could return to work earlier than she had originally planned, and she agreed! She told us previously that he should not expect to return to work for up 6 months following his transplant, but that it may happen earlier depending on his progress. Since he has done so well, she has given him the approval to go to work 2 days per week for 4-5 hours each day. Jack is excited to go back, even at a reduced schedule. We got one more piece of good new this week- Jack can drive again! Dr. Sproat wants him to drive with others in the car for a few weeks and then he can start going short distances on his own if everything goes well.
It also seems like Jack has developed allergies. Dr. Sproat said that this is very common in post transplant patients. Some doctors think that patients inherit the allergies of their donor, and other doctors think that your body resets after all of the chemo, so you may develop new allergies. Either way, Jack cannot have an allergy screening until after he is off most of his medications, because they will cause the test to be inconclusive. Based on what makes him sneeze and get a runny nose, we think he is allergic to dust and pollen, but he will have a full screening next spring. If/when we get to meet his donor, maybe we can compare their allergies to see if they match up! I'm not sure if I have mentioned this, but we must wait 1 year to meet Jack's donor. She also has to agree that she wants to meet Jack. Before then, neither can know any personal information about each other beyond age, sex, blood type and disease. Hopefully we get to meet her!
That is all of our new information this week! We'll keep updating you as things change and progress.