Saturday, October 30, 2010

We met with Mike’s doctor yesterday regarding his BMT and here is what’s happening: They have found several 8/10 and 9/10 matches in the National Registry. The doctors would really like to find a 10/10 match to reduce the risk of Graft vs. Host Disease. They continue to submit him weekly into the registry to see if any new donors are a better match. They are also searching cord blood registries and will continue for a few more weeks – praying that a better match comes available to him. She did not say exactly how long they will wait to see if one comes up and would settle for a 9/10, but the longer we wait, the higher the risk of relapse and less effective the transplant could be. If you are willing, please consider being tested and joining the registry. You could be a perfect 10/10 match for Mike! Please pray that we find one!! In the mean time, Mike will remain on the maintenance therapy taking 14 chemo pills weekly and getting a monthly infusion. He has been in good spirits and looks fantastic! He had a large hurdle to jump when he accidentally over-dosed on his chemo pills and his body had to recover, but he is doing very well now. His parents were so gracious to fly us up for a visit to MD for some intimate time with close friends and family. It was a much needed refresher for us!! Mike came home singing and smiling. His heart is lighter than I have seen it in a long time. I feel like I have him back. :-)

Thank you for all of your stories and testimonies that you send to me. I am continually amazed by each one as I read the things that so many of you have overcome. People tell me that they see us as “Survivors” and look to us for inspiration…but I look to all of you, because in one way or another, we are all survivors. Whether it is dealing with an illness, the loss of a dear loved one, a dysfunctional family or childhood, broken marriages, unforeseen tragedies, losing everything and starting over… the list goes on… We all have a story that makes us who we are. I truly believe that the human spirit is the most powerful thing under God. We carry so much potential and resolve within us that can only be seen when we are put to extreme tests and challenges and are tried to our very core. My inspiration comes from those who have remained positive but kept it real; not retreating under the burden or allowing bitterness to shadow their hearts. We are all over-comers in our own way….everyone has been through something and if you were facing what we are facing, I am confident that many of you would find the same strength that we have to carry on.

Mike’s doctor is projecting that the transplant could take place early–mid December which will put him in the hospital through Christmas but I am grateful that he will be around for Thanksgiving. I will probably update again before the holidays start, but if not, we hope that everyone has a wonderful Thanksgiving and a safe & FUN Black Friday!! :-D Blessings to all!!

Thursday, October 7, 2010

cleared for's the latest

Hello everyone! =) I hope this message finds you all in good health and good spirits! The weather has taken a fabulous turn and I am always amazed by how it seems to give us all a better attitude!

So here is the latest:

After the recent diagnosis that Mike had relapsed, he had to endure 4 weeks of intense chemo and then go for another bone marrow biopsy to see if it knocked out the leukemia. She warned us that it would probably take two cycles of the 4 week treatments and that Mike would feel very sick and most likely lose all of his hair again... With much credit going to all of your prayers and the grace of a wonderful God, I can report that Mike did NOT feel extremely sick during this last cycle – he had some bad days, but overall, it was not as unbearable as previous treatments have been, he did not lose ANY hair and the chemo was effective after only ONE cycle! His most recent biopsy showed no leukemia cells, so he is cleared for transplant. Currently, he is undergoing the preliminary procedures for the transplant which include a maintenance chemo – he has to go once a month for infusion and take about 19 pills throughout the week, getting all of his dental work done, pulmonary function tests, etc… They are also clearing the donor and setting up everything on that end for transplant to hopefully take place within a few weeks.

Everyone is asking lots of questions about the actual transplant procedure, so I will try to explain without messing up too much of the info… Once everything is in place, Mike will be admitted to Moffitt. The first week will be chemo “conditioning” treatments to completely wipe out his system. It is designed to treat the disease and prepare his immune system to accept the new stem cells. This will destroy or damage both the abnormal and normal bone marrow cells. After conditioning, he will be given an infusion of healthy stem cells. Following the transplant, the stem cells will grow in his bone marrow and generate a normal complement of marrow and blood cells. Prior to recovery of the marrow, he could be at risk for developing infections, bleeding, or anemia. During this time he may need transfusions of red cells and platelets until his marrow can produce these on its own. He may also be at risk for developing toxic effects to various organs as a result of the conditioning therapy. During this phase of transplant, aggressive care and support is required until the blood cell counts and organs recover. He will be under close observation by the transplant team for several weeks. Once he is released from Moffitt, he will be required to stay on campus in the Hope Lodge for several weeks under 24-hour care (which is not provided by Moffitt) until he gets the “ok” to go home. The entire process takes approximately 100 days. These are just the facts I have been given – but my faith says that he is not going to have ANY complications or toxic effects. I need EVERY ONE OF YOU to pray and speak in agreement with me on this! We believe that words have creative power and we going to speak only a positive and speedy recovery for Mike. (Isaiah 55:11 says “so shall my word be that goes forth from my mouth; it shall not return to me void, but it shall accomplish what I please and shall prosper in the thing for which I sent it.”) Our prayers have worked before… I know they will work again – please KEEP PRAYING!!! I cannot ask this enough!

In the mean time, we are enjoying time together as a couple and as a family. We went camping last weekend and are planning to go again next weekend. Mike has to be very careful to build his strength as much as possible with appropriate exercise and proper nutrition. We are working on that with getting outdoors as much as possible and preparing healthy meals. There is a joy in our atmosphere that I cannot explain. Don’t get me wrong, we have our moments of doubt and fear, but for the most part, everyone’s prayers have been very effective to keep us encouraged and looking forward to the future. We really cant thank you enough for keeping us lifted up! I cant imagine how people get through times like this without a solid support system. The kids are adjusting to home-schooling – so far, so good! :) Their test results have been good, so I guess I am doing something right! They are keeping busy with dance and trying to earn funds to go towards their competition team events. They also have their moments of fear and worry, but overall – I think they are handling things very well.

Thank you SO much to everyone who contributed to the Joe Corbi fundraiser!! Considering that Mike will be unable to work for quite some time and his medical expenses are outrageous, every bit of financial support is SO APPRECIATED!! If you were unable to participate in our fundraiser, but would like to make a donation toward his treatment, we have a Michael Johnson Leukemia Fund set up on Paypal. Just click the link:; Danielle has also set up some other ways to help our family during the holiday season, so if you are interested in contacting her directly, her email address is She has been a TREMENDOUS blessing to us through this time and has organized several ways to provide assistance to our family. Also – a special thank you to everyone who has joined the National Bone Marrow Donor Registry in Mike’s honor. Mike’s life will be saved because someone registered – and we are so grateful for those who are brave and willing to go through being a donor to save another life! We know that God will return the blessings 100 fold to each of you!!

As always – we are thankful for you – EVERY ONE OF YOU!!! I read every comment, text, card, email, wall post, etc… and I remember each one of you as if you were the only one… please keep them coming! They help more than you know!