It’s DAY +450 post transplant (1 year, 2 months, 24 days). Kevin is struggling a little bit this week, but he’s doing okay. He is still on his second Prednisone wean. This time around it’s a slower taper, since he failed the first taper. Unfortunately his GvHD is definitely flaring again. His face and head are red. His nose skin is really rough and hard. He has some sores showing up in this joints. He’s pretty twitchy and he’s also feeling some bone pain and numbness in his legs, but things are still stable. We just have to be on high alert right now. Kevin’s down to 7mg of Prednisone a day and he’s still taking immunosuppressants and several other drugs daily. This isn’t even all of them.
The only way that Kevin can even think of getting off some of these drugs is to wean completely off Prednisone and immunosuppressants. He also cannot return to work or spend a lot of time in public until he is weaned. It’s looking like he still has a way to go. All we can do is wait and watch and hope that things will improve. In the meantime, we make the most of each day. Because we can’t choose everything that happens, but we can choose to do that. So we do.
We also have this little man to keep us happy and occupied with awesomeness!
Exciting news! We recently submitted forms to One Match that will get the ball rolling to eventually meet Kevin’s stem cell donor. Unfortunately we were given the wrong forms to complete, so we are re-submitting the new forms at his next BMT appointment. We don’t know if we need to wait 2 years. Different registries have different rules. Some programs are 1 year and some are 2. We should find out soon.
There are a lot of things to consider before you decide to release your information to the donor. Obviously there have been situations that have made it necessary for the following clauses:
So at first, we will just release certain information to the donor and hope that we have no issues. It would be awesome to meet this person that saved Kevin’s life, but I realize that we can’t get our hearts set on it just yet! Fingers crossed!
Speaking of meeting stem cell donors, a.k.a. HEROES, our friend Mackenzie Curran has finally met her awesome stem cell donor!! He even travelled to Canada all the way from Germany! If you click on the image, you can watch the News clip! It’s awesome!
I know I am repeating myself, but I can’t stress this enough. NO amount of money or science can save many blood cancer patients. They NEED blood and sometimes stem cell donations to survive. Blood and stem cells can only come from PEOPLE. So we need more people to give blood and get signed up on the stem cell registry. I know this takes a lot of courage for some people and I know that some people cannot donate for medical or other reasons. But there are many people who can donate who just don’t because they have misconceptions about the procedures or they just don’t realize the need until it hits close to home. I know this, because I was one of these people.
So if you are reading this and you have never seriously considered donation, please do. And don’t assume you are disqualified. I thought I would be disqualified because I am medicated for high BP and take a Parkinson’s medication. Although I am too old for stem cell donation, I totally qualified for blood donation. I am now a regular donor. For more information about blood and stem cell donation, please visit blood.ca
We run group blood clinics everything month. If you are in the Kingston, ON area and you would like to join our Awesome and Beyond Partners for Life team and donate with us, please contact me and I will be happy to sign you up! Thanks for stopping by!