still in critcal care - trying to stabilize

I am sorry I do not have much to update, other than Mike looks better today and was a little more responsive. They are trying to stabilize his platelets but the leukemia keeps eating them up and he is not stable enough for chemo to treat the ALL. Last count was 33, which is much better than 0, but he really needs to get to 50. Specific prayer requests today are that his body will stabilize and that the bleed in his brain will stop and re-absorb naturally. Pray for good test results today and good neurological responses. She said he is doing very well considering his condition - thank you for the prayers!!! Please keep them coming! I am sorry I can not respond to each of you individually - I am trying to keep up as best I can! I appreciate each and every one of you!! ♥

a day that went from bad to worse...

We woke up early to take Mike for early labs and doctor appointments. Within an hour of getting his labs drawn, he had bled out all down his chest from the needle prick in his port. The oncologist came in and immediately admitted him to receive platelets and blood. We moved ourselves upstairs and got settled in his room. They expected that it would take 4-5 days to bring his blood levels back to normal. When he was taken out for a CT scan, I went home to grab some items for his stay. It was the worst I had ever seen him. 45 pounds less than he was only 3 weeks ago, he had no color other than all of the petichial hemorrhaging that covered his body from head to toe. His lips were pale and dry and his eyes were dark and blurred. He has not been able to engage in too much conversation over the past few days – mostly dreaming out loud and having hallucinations. I was grateful that he was in good hands to start feeling better.
My mom had offered to run Mike’s clothes and items down to the hospital for me so I was looking forward to a night on the couch with the kids watching the American Idol season premier and then heading down to see Mike after work tomorrow. Then I got the phone call… I had to go outside to answer my cell because of the bad reception inside my house. The voice on the other end was compassionate but direct, “Mrs. Johnson… we have received the results of Michael’s CT scan and there is a subdural hematoma in his brain that is bleeding, so he is being transferred to the critical care unit. We are consulting with the neurosurgeon, but because Michael’s platelets are so low, surgery is not even an option at this point… I am sorry I have to ask you this, but have you prepared Michael’s final wishes?” …
I hung up the phone and I fell to my knees right there in my driveway. Any tears I had been holding back for sake of “being strong” up to that point did not recognize the walls I had attempted to build for them to hide behind. My dear neighbor came over to comfort me and my mom showed up shortly after. I was in a daze – trying to prepare items to take down for Mike, items for me to stay with him, making arrangements for the kids and the dog, calling my boss to make arrangements for work and contacting his family.
Upon arriving I had to wait over an hour to see him. The nurses were frantically treating him, trying to get blood and platelets going as fast as possible. When I finally did get to go back, he was incoherent. The nurse was able to get him awake for a moment because she wanted to confirm that he could identify who we were – which he did – and went back to sleep. I spoke to the doctor and she explained that they are trying to pump the platelets and blood into him enough that it will stabilize him & stop the bleeding. They will do that as long as necessary. At this point, still, surgery is not even being considered.
My mom and I are camping out in the waiting room for the night. I am allowed to go back and visit him at almost any hour with nurse approval. I don’t intend to leave this place until I have gotten a good report that he is improving. Thank you SO MUCH to everyone who has been letting me know that you all are praying. I cannot tell you how encouraging it is. I know that Mike’s life is in God’s hands and I think if we bombard heaven enough, it just might bring the miracle we are hoping and believing for. Please be careful to only speak positive things about Mike’s condition and recovery. We believe that words have creative power and we need to speak that he is going to be just fine, very soon.
Much love to all of you!!!
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

update and a song for Mike

It’s been another crazy week.

Last week Mike was admitted to the hospital with what they thought was pneumonia (still not sure at this point). He was very sick – almost like last summer, sweating profusely, coughing and fevers. They treated him with IV antibiotics, fluids and steroids. On Thursday he started a 4 day chemotherapy treatment, 24 hours each, back to back. It seemed that made him even sicker. He was not eating anything and the little he tried to eat, he would throw up. A week later, he has lost almost 20 pounds (30 since Christmas). We have been visiting him on and off but he has mostly been sleeping. I talked to him this morning and he sounded better but was still very nauseous. They are planning to do a lumbar puncture in the morning to put chemo meds into his spinal fluid and to check to see how much leukemia (if any) is still in his system. He should be released to come home shortly after that. We will meet with his doctor this week to get this rest of his regimen after they determine the results of his LP tomorrow.

Thanks to everyone for all of the support we have received (especially this past week!). Mike’s mom flew in to be here last week, so it is a huge relief to me to feel like I can balance everything; and my brother and Zack have been taking care of things around the house that Mike would normally do. So many of you have reached out to check on me & the kids or help out with picking up random items and dropping them off. It definitely makes a BIG difference for me and the kids! THANK YOU SO MUCH!!

This afternoon I actually got a few hours to myself in a quiet house, so I decided to write. Writing is such therapy for me; I wish I had more time to do it. Here’s the result…

Song for Mike

Every time I have to leave your side, a piece of my heart breaks
I know I gotta be strong, no matter what it takes
Fighting to believe, everyday, that you’re gonna get better
Balancing my happy thoughts to weigh more than fear and anger
So often I look back to the days, when we were just two kids
Dreaming dreams bigger than the sky … we never imagined this
Now our boy is learning early how to become a man
Such a strong faith, he knows, even when doctors cant – God can
And you know our baby girl, she just breaks down and cries
Every time she sees someone with your innocent blue eyes

We pray for you every single day, sometimes through our tears
But such a peace comes from knowing, we serve a God who hears
I believe He is right beside us – every step on this road
HIS footprints got deeper when we were given this load
And baby, I know you’ve been fighting to hold on a really long time
But don’t give up and you’ll see the top of this mountain was worth the climb

There’s no denying I’m missing you… your smile, your laugh, your touch
Can’t wait til you’re beside me again, I just want to feel you close so much
I want to snuggle up under your arm and lay my head on your chest
And press my ear close to listen to strength manifest
And I honestly wouldn’t trade this because I trust that God knows best
There is an awesome testimony on the other side of this test

So every time I get weary, start getting discouraged or feeling low
I just remind myself that I’ve got front row seats to see an awesome miracle
I look forward to what’s ahead, not getting caught up too much in the cost
When God’ redeems the time – you will see that none was lost

=) Love you baby. <3

a change of plans...

Since our last appointment with BMT, we have been scrambling to get Mike’s dental clearance completed by 11am today. We had it in hand at 10:30a and had to rush to Moffitt to turn in everything and get the final on proceeding with transplant.

Upon meeting, we were informed that the results on Mike’s lumbar puncture were not good. There is still a low level of leukemia in the spinal fluid around his brain. A transplant will not treat the leukemia that this point. Mike will have to go back into an induction round of intrathecal chemotherapy (injected directly into his spine) and most likely consider spinal cranium radiation therapy. This cycle could last several months before the leukemia is treated and he could be cleared for transplant again.

The option is always in Mike’s hand to not continue with therapy. His body has been through so much already and the thought of another round of more intense chemo and radiation does not sound too appealing. If he were to choose against further treatment, the doctors estimate that Mike would have 2-4 months left to live.

All I can say is, God is bigger. I believe that God will impart divine wisdom to both of us to find new healing methods and I really believe that Mike is going to make it through this. I am not denying that I am afraid and angry. Mike deserves to be well…Now. I honestly don’t know what God’s intentions are to allow us to go through such difficult circumstances, but when I really comes down to it, I trust Him. His plan is better than mine and somehow, someway, good will come from this.

Please keep us in prayer over the coming weeks that we will be strong, have peace and enjoy every moment we are blessed to have together.

And please…imagine your life without someone that you love and then go tell that person how much they mean to you. No one is promised later.

...another long day

*sigh….deep breath* It was another long day…

Today we met with the BMT team to go over results of Mike’s most recent bone marrow biopsy and requirements for transplant. He is showing a 1% relapse which means the leukemia is already trying to come back from his last remission in October. At this point, they are still going to proceed with transplant as long as his lumbar puncture tests come back satisfactory and that we can get dental clearance by Friday. We still have not heard back from the dentist to even get him in for a visit, so if anyone knows a dentist near Tampa who would be willing to help us out before Friday, it would be greatly appreciated. If we don’t have dental clearance to turn in on Monday, his doctor is cancelling the transplant.
We went over about 50 pages of consent forms and side effects which we have to take home to review further before his appointment next Monday. I have a hard time processing all of the “what ifs” at this point, so I really just have to put everything in God’s hands. I know that everything is going to be ok because God is amazing and no matter what – He will look out for me and my family.

Mike has been in very good spirits and we are certainly determined to enjoy the next few weeks together as a family. We are taking in every moment and enjoying it to its fullest. We pray that all of you will consider us throughout the holiday season and do the same for yourself and your loved ones. Life is too short not to enjoy it and appreciate what you have.

We wish you all a very Merry Christmas and a blessed and prosperous new year!! Much love and joy to all!!! <3

Transplant Update

Hey everyone! I hope you all had a very happy and relaxing Thanksgiving weekend.

Today, we went to see the Bone Marrow Transplant Team at Moffitt. Because the risk for relapse is 100% at this point, Mike’s best option is to go through with the transplant. We were hoping to find a 10/10 match, but Mike has a very unique antigen that is not common in most donors. They did find a 9/10 match, so he is scheduled to be admitted on January 5.

Listening to the statistics is less than inspiring, but for everyone who wants details, here they are: The transplant success rate for 2^nd remission patients is 35% and is generally determined within the first year, but there is a 2 year window and a 40% chance that another relapse could occur. Of the 35% that survive transplant, up to 65% experience chronic life-long illnesses due to Graft vs Host Disease. This is when the donor’s cells attack the cells in the patient’s body. We do want a minimal amount of GVHD to occur so that the donor’s cells will attack the leukemia and keep it from coming back. Mike will be in the hospital (at Moffitt) for up to 6 weeks depending on his progress and then he will have to move to the Hope Lodge on campus or find a local apartment to keep him within 15 minutes of Moffitt at all times for an additional 6 weeks. The Hope Lodge is free but only offers 11 beds and is very limited. We will not know until the end of the first 6 week period whether there will be a bed available for him. The apartments are $75/day but they work with Moffitt for some financial assistance. We have to be prepared to cover these costs out of pocket and to provide a 24/7 caregiver (and a back-up) during this secondary 6 week period.

I have said it a thousand times and I will continue to say it; my hope is not in statistics or doctors or even in medicine. My hope is in our Creator and the God of all. Nothing can come to us without passing through His hands first, and if He is ok with it – then I trust Him. His plan is better than mine. I may not always understand it – actually, most of the time, I just don’t get it at all – but I know that my mind is limited in its processing. The appointment today was very difficult for both of us. These things are extremely hard for us to hear and we have a very long road ahead of us. But, in faith, I believe that God’s plan is perfect. And I will yet praise Him for all that He is and all that He continues to do for us. I’m believing for the BEST possible outcome and that Mike’s progress will astound the doctors and blow all of their statistics out of the water. Mike is going to do great. He is a fighter and he will give everything he has to getting better every single day.

Please continue to keep our family in prayer. We want only acute GVHD and that the transplant will go very smoothly and completely wipe all of the cancer out of his body. Please pray, also, that Mike will be able to get all of the dental work he needs done as soon as possible to clear him for admission. Thank God for providing financially for us and please pray blessings upon the donor and upon my employer for being so gracious. Pray that we will remain strong in every area and that whatever God’s will is, will be done.

Much love and thanks to all for continual prayers and encouragement!! We couldn’t get through this without you all!! <3

PS> Once transplant starts, I will be doing online updates on Mike’s leukemia group Facebook page. It will just be 1-2 sentences each day of his progress, so be sure to join if you are interested in keeping up with his status daily. FB Search: Michael Johnson Leukemia Journey

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!!