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.

Day 41

We haven't updated the blog lately, so we thought we would let everyone know how Jack is progressing. He is doing great- better than the doctors expected! He only needs to go up to Mayo twice a week. He is feeling great too, he is starting to run in the mornings before it gets too hot or riding the stationary bike at our house to get back into shape. He's even got a soccer team lined up to play with in a couple of months once Dr. Sproat gives him the go ahead!
This isn't a long post, but we wanted to let everyone know that things were going well! Thanks again for keeping Jack in your thoughts :)

Day 30

Today marks 30 days since Jack's stem cell transplant. We originally thought that he would need to come back to Mayo for daily visits, but so far it has been every other day! Next week the doctors hope to change it to once every three days.

This means that Jack is doing well. His blood numbers have been slow to come back, but that is typical. He feels great- he has his appetite back, and we are going on daily walks around the neighborhood (after dark of course- it's supposed to get up to 112 degrees here this week!) Jack even got clearance to eat at restaurants as long as he is careful about what he orders. He cannot have fresh produce unless it is thoroughly washed, and he must avoid food that has been sitting out or may be undercooked.

We have become pros at staying on top of Jack's medications! The doctors have added a couple more since he was released from the hospital, but we have learned to recognize them all by sight. We have a handy system down using a dry erase board that sticks on the fridge. We abandoned the spreadsheet idea because the doctors change medications and dosages every now and then, and it was getting to be a chore to re-print it after changes were made or open his laptop each time he needed his meds. With the dry erase board, we can make the required changes and have the schedule handy throughout the day. Most days, Jack takes 13 pills in the morning, 3 in the afternoon, and 8 at night. Lots of pills, I know, but he will take fewer and fewer as the summer continues.

There isn't too much more to report. We have been trying to lay low to keep Jack healthy and well. We will continue to update the blog as we learn anything else, or as his recovery progresses.

Thank you!

Day 21- Jack is Home!

Jack with all of his medicines

It's been 3 weeks since Jack's transplant, and his blood counts have been continuously improving so the doctors let him leave today! He has officially en-grafted and his doctors say that things are going well so far. He is feeling well- a bit nauseous and tired, but those are common side effects of many of the pills they sent him home with- 12 bottles in all! We are still working on a system to keep them all straight- he needs to take most pills twice a day, certain ones 2 days a week, some are two pills once a day, others as needed...you see where I'm going with this :) The doctors suggested spreadsheets and since Jack is so good with excel, that's what we will try first.

Saying bye to Mayo

Jack will begin his daily trips back to Mayo tomorrow. They will be checking his blood numbers to make sure he doesn't need any nutrients or blood products, and they will be making sure that everything is going according to plan. Since he can't drive quite yet (due to medications) he will always have a "buddy" take him back up to the hospital. As the summer goes on Jack will begin having fewer restrictions on his diet, driving, and ability to go out in public. For the next few weeks though, he plans to take it easy.

Thank you all for your support through the past 4 months! Jack has had so many prayers, positive thoughts, helpers, cards and games sent his way and we certainly appreciate it. Thank you!