another crazy month

Gosh, so its been another crazy month…
Mike went to MD to visit his family in the middle of April in between his last few chemo treatments. I was really starting to feel like we were coming down the home stretch of the worst of this journey…boy was I wrong. 5 days into Mike’s trip he started experiencing flu-like symptoms and was admitted to Johns Hopkins with pneumonia. Every day, it seemed like the doctors pushed his release date a little further as he was not getting better and his fevers were just getting higher. I became increasingly concerned that he had relapsed with the leukemia, so I got on a plane and flew up to be with him. I know we had so many people praying and I attribute the good test results to a very gracious God. He was released within a few more days and we returned to FL just in time for me to get pneumonia. My family really pulled together to help us get through that week, because I was completely wiped out. Mike was scheduled to start chemo again when we got back, but it took a while longer for his body to kick the cold he was fighting, so he just started his final week yesterday.
We took some time to meet with the Bone Marrow Transplant Team at Moffitt yesterday. We had pretty much decided that Mike was not going to go through with the procedure but we wanted to hear what they had to say. What a nightmare… as they reviewed the statistics we were extremely overwhelmed. Basically… if Mike were to continue with the chemo as planned and not get the transplant, he only has a 20% chance that the leukemia will not return and be worse than it was the first time. If he does the transplant now (in his first remission) his survival chances are 45% over the next 3-5 years with the highest risk of death being within the first 3 months of the transplant. If he waits and the leukemia comes back and they are able to get him into a second remission, the chances of survival are only 25%. If he goes through with the transplant, he is at a 90% risk for developing “graft-host disease” which could affect his body in extremely negative ways for the rest of his life – including vital organ failure. Needless to say, that doctor’s office felt like a tiny box with no windows. They were sitting there telling us that with the VERY BEST they can do, Mike is looking at a 20-45% chance of being alive in 3-5 years.
I am thankful for my faith. I am grateful to know a God that is bigger than statistics and medicine and doctor’s offices. I may not be perfect and I may not even deserve His blessings, but I am still going to believe for them. I believe that my husband is in that 20% that will never be sick again. I am going to pray it and speak it every day over his life. Mike deserves to be well. He deserves to see his son graduate and walk his daughter down the aisle. He deserves a full, happy life full of love, success and good health. He is the most amazing, compassionate, unselfish and caring person I have ever met. Please join me in believing for the best! <3

the details

Here’s the details:
Mike left for a trip to MD on the 17th to visit with his family. Towards the end of the trip he started to notice his temperature going up and was getting cold chills. His doctor at Moffitt told him to get to Johns Hopkins immediately. Upon being admitted they told him that his white blood cell count was dangerously low and that he had pneumonia. They started treating him with antibiotics, expecting to release him within a few days. Two days later, his WBC was even lower and he was still spiking high fevers, so the doctors added an antibiotic to treat fungal pneumonia. When I spoke to the doctor on Tuesday, he was confident that Mike would no longer have fevers and he should be able to come home by Thursday.
Unfortunately, last night, Mike took a turn for the worse. They discovered that Mike’s red blood cell count was very low and started a transfusion. During the transfusion, his fever went up to 103.5 and they had to stop giving him blood. The Oncology team came in and told Mike that they were going to have to do another blood smear to check for lymphocytes (leukemia cells). I don’t really know how to give words to the way I was feeling last night. My husband was 1000 miles away and at the end of every phone call I wondered if it could be the last time that I would hear his voice. I wanted to turn on a video chat and leave it on 24/7, just to be by his side. I have heard many positive testimonies of people who have recovered from ALL – but not many from patients who contracted pneumonia. Those were the worst stories I heard. Everyone kept saying, “He will be fine, as long as he doesn’t get sick during his treatment.” As much as I know that God is the Author of life and completely in control, there was such an urgency to get to MD and be with him. I booked the first flight out and got here this morning.
A few hours ago we received the awesome news that Mike’s cells are all normal. They think the fevers were caused by a drug (neupogen) to increase his WBC count. His temperature has been normal all day today and the doctors think he should be able to come home by Friday or Saturday. He will be able to fly but he has to wear a special face mask in the airport and on the plane. They are still treating him for the pneumonia and now checking for one additional infection that they may require changing one of his antibiotics, but the prognosis is good. THANK YOU GOD!!!
Many friends and family have asked about coming by to visit, but Mike really just needs to rest. We appreciate everyone’s sentiments and prayers so much. Please keep lifting us up as we continue this journey.

the latest.....

Hello everyone! :) I hope that everyone is doing well – just wanted to give another quick update:

Mike is currently in the third month of the Consolidation phase, with only one more month to go before he enters into the Maintenance Phase. By May, he will only receive treatments once every six weeks, as long as everything goes as planned. While it is almost a relief to see a break in sight, we are still undecided about the bone marrow transplant. Lots of people have been asking a lot of questions about this so here are the details:

When Mike was diagnosed last June, we were told by doctors that he would not need to consider a transplant as long as his treatments were working. His blood was negative for the Philadelphia Chromosone, so we had high hopes that his three year treatment plan would be all that he had to endure. Since transferring to Moffitt in Tampa, the doctor here has been pushing that Mike go through with it. We have been torn over the matter due to the fact that we’ve received conflicting opinions, so here are the facts we have to consider:

A bone marrow transplant would increase Mike’s chances of leukemia not returning by about 10%. He has to be in remission (which he is currently) before he could proceed with the transplant. However, there is a 3% fatality rate due to the recipient not responding well to the donor’s blood and because the immune system is completely wiped out, there is a great risk for infection or viruses making the recipient more ill. The transplant is a 100 day process which would require him to live in the hospital for a minimum of 6 weeks. Mike’s COBRA premium goes up to $1140/month in August and I am not sure how much time we have on his insurance after that, or the chances of him getting insurance through another company if he is not able to go back to work anytime soon. Right now, we have hopes that he could return to work this summer as he enters the Maintenance Phase and just sticks with the original treatment plan. We also have to consider that if he does not get the transplant now, and if the leukemia were to come back later in his life, his body may not go into remission as quickly since he will be older.

At this point, Mike has decided to go meet with the Transplant Specialists at Moffitt and continue to pray about whether this is the direction that he should go. It is a very heavy decision and the burden on Mike has been extreme. Please continue to pray that God’s will be done and that we will all be peaceful through everything, trusting that God has a perfect plan.

The kids are staying busy with school and dance. They just finished SAT and FCAT testing. They are both doing well academically and their teachers say that they are doing extremely well considering the circumstances at home.

We are very proud of Zack. He has chosen to participate in a “40 Hour” event being held at our church where he will live outside in a cardboard box to raise awareness for the homeless. It starts this Friday night and runs through Sunday. He will only have one bottle of water and a box for the entire 40 hours. The group will be fasting and at the end, they will be going to a soup kitchen to serve the homeless with the funds that they raise. Zack has to raise a minimum of $20 in sponsorships (which has been met) to participate, but if you are interested in sponsoring him, please let me know. All funds will be used to minister to the homeless community.

I have been staying busy with my job – it feels weird to even call it a job, because I love it so much. The company that I work for is rapidly growing and I am very excited about the direction and opportunities that are opening up for us. Sheryl and Beth have been extremely compassionate toward my circumstances, yet motivate me and challenge me every day. I love them SO MUCH and I am so thankful for them, so please pray for blessings upon their endeavors!

Thank you so much for all of your continued support, love, prayers and encouragement!!

needing refreshing

Well, I guess it’s that time again…it’s been a few weeks since my last update…

I won’t lie – it’s been rough. Mike completed his first full week in February without complications but developed huge canker sores in his mouth. He has been unable to chew, talk and sometimes even drink without a lot of pain. He is taking serious narcotics just to get through each day. He lost all of his hair (including his facial hair) but we are starting to see little sprouts coming back in. He is concerned that it is just going to fall out again with his March treatments, but I guess we will see. We still have not made a definite decision about the bone marrow transplant. If it were up to me, it would not even be considered any longer; but this is Mike’s decision and he is weighing it very carefully. I am trying to give him the time and support he needs to be clear on the direction he wants to proceed.
We are grateful for the extension that Obama signed giving us a continued break on the Cobra premiums, but that will only continue through July. At that time, his premium will go up to $1140/mo. We no longer qualify for Medicaid assistance now that Mike is receiving disability payments so our prescription and co-pay costs have been outrageous. We are still waiting for an answer from the bank regarding a loan modification on our mortgage – it has taken then 8 months to review our information and they keep telling us they will have an answer “soon”.

Please continue to pray for us. Our spirits need refreshing more than anything. There are very few things in this world that will take a person to the very edge of everything they are made up of – but cancer definitely has that effect. When we feel strong, it seems like nothing else really matters and we believe that it will all just fall into place as it is meant to. But when we are weak – it’s a challenge just to get through a day. I feel like the devil is working over-time to put us at odds against each other, making this so much more difficult….and making us feel like we are alone. When people stand together through times like this, it makes relationships stronger – where they can sustain anything that comes their way. I believe that is what God is developing in us… please pray that we will make it through all of this – united.

Thank you for your continual support. <3

Psalm 121
I look up to the mountains; where does my help come from?
My strength comes from God, the God who made heaven and earth
He won't let me stumble,
The Lord who keeps me will not slumber or sleep
The Lord is my Keeper, He is right beside me – protecting me
Shielding me through the day, sheltering me at night
GOD guards me from every evil, he guards my very life.
He guards me when I leave and when I return,
He guards me now, He guards me always…even forevermore

911/hopsital update

To update everyone: Mike came home from the hospital last Thursday. Last Sunday we had to call 911 because he was having severe bone pain. He said that he felt paralyzed, like his joints were all locked up and his bones were “exploding”. He was having trouble breathing and could barely complete a sentence. The Community hospital kept him Sunday and released him on Monday hoping that he would get through to his appointment at Moffitt on Tuesday morning. Mike had another attack Monday night and we had to call 911 and rush him to Community hospital again. This time they kept him until he was able to move to Moffitt for further testing and treatment. The doctors at Moffitt determined that Mike had a negative reaction to his most recent dose of Neulasta. It is a drug that boosts his white blood cells and is known for causing bone pain. They had to keep him for a few days to monitor his lab work and they released him on Thursday. He has been feeling fairly well since he has been home. He is not able to do much activity; just walking causes his legs to hurt. He has also lost all of his hair again. This time, he is completely bald. It was coming out in clumps (even his facial hair) so we shaved down the rest of it. His eyebrows have been thinning out also, but he is hoping he will not lose them completely. At first, he seemed to be taking it really well, but as the days pass, he seems more and more concerned about his appearance. I think it is becoming very difficult for him.
Mike will resume his regular treatments this Tuesday. He is not scheduled to get another Neulasta shot for a while, so I am hoping that he will be feeling okay for a few weeks. I want to say a special thank you to everyone who has been a continuous encouragement to us, to my mom & Terri for running all over FL to help me last week and to Kasey & Sam for cleaning out our garage and making us dinner! Even the littlest things make such a huge difference for us!:)

GOOD NEWS!!

Mike was released this afternoon to come home. They gave him dilaudid as needed for pain and he has an appointment at Moffitt early tomorrow morning. The doctors think that the pain was brought on by a combination of the most recent chemo drug Mike received & the fact that he worked out on Saturday. He pushed himself a little too hard with push-ups, a cardio workout, etc.

His labs improved throughout the night, so I know that prayers are being answered. His WBC count went up a little, there is only a concern is he gets some kind of infection or if he gets a fever. He will get another treatment tomorrow after review with his Hematologist.

Thanks to everyone for all of the prayers and encouragement. Each and every one of you means so very much more than you know!

911 update

Well, it has been a crazy evening…Around 4:00 this afternoon Mike started to have some body aches so he took his pain meds…with still no relief 15 minutes later, he took more pain meds. By 4:45 he was screaming in pain and writhing all over the bed that his body felt paralyzed and his bones were “exploding”… I made the call to the Cancer Center and was told to call 911. An ambulance took him to the community hospital where they were able to bring his pain to a tolerable level. During last week’s treatment he was given a shot of Neulasta to boost his WBC which is also known for severe bone pain. The hospital ran all kinds of tests and determined that everything looks fine except that Mike has close to zero white blood cells. He was admitted for pain management and to keep an eye on his blood tests. With the low WBC, I am not sure whether he will be kept at the Community Hospital or transferred to Moffitt.

Thank you to everyone who has been praying – please keep them coming!!

I will keep everyone posted if there are any new developments!

Isaiah 53:5