Hey everyone – first let me apologize that FB was being ridiculous yesterday and emailed my message 5 times. I promise to never be that annoying!!
Ok, so this week has been kinda crazy. We’ve really had to do some re-arranging and serious soul searching. As much as I am all for staying positive and keeping a smile on my face, I think it is necessary to allow ourselves time to grieve through difficult situations. If you have ever held the tear streaked face of a grown man in the palm of your hands and felt the full gravity of it, then you understand the brokenness of those moments. I spent Saturday in the depths of despair, crying all day and at the peak of any stress level I have ever experienced. However, it didn’t take me long to realize that I am no good to anyone in that state and I really had to pull myself together. By Sunday I had found a divine peace with everything going on in my life and started to feel 100x better. I believe it’s attributed to all of the prayers that are reaching heaven for us. Jadeyn made a huge decision to be baptized in Christ this week, after much consideration. Mike & I believe that as parents, we can guide our children to believe in God, but we give them the freedom to choose for themselves what they want to believe. We are very proud of Jadeyn’s decision to follow the teachings of Jesus. Mike endured 10 long hours at Moffitt on Wednesday and was very weak and nauseous, but he made it to baptize our little girl that evening. Again, attributed to everyone’s prayers for us – thank you SO much!! We also settled on a definite decision to proceed with home-schooling them. My boss has been extremely supportive and has been gracious enough to agree that I can bring them to work with me 2 days a week. My mom is going to take a day and the other day will be split between other family and friends. I feel so peaceful making this choice, knowing that our family will remain very close over the coming months.
As for Mike, he has slept most of this week. He will endure a very intense chemo regimen for the next 4 weeks and then get another bone marrow biopsy to clear him for transplant. Please pray that his body will respond well to these treatments and that there will not be any problem finding an excellent match for the marrow. The transplant will most likely happen toward the end of this year. We have received conflicting reports as to when this will occur, so I will give more details on that process as it approaches. Many of you have asked how you can be tested to see if you are a match for Mike’s bone marrow… Unfortunately, there is no guarantee that if you register that your marrow will be designated to go to Mike only. There is a national registry that you can join, but your marrow will go to whoever is the closest match to you. If anyone is willing, I encourage you to be tested and join the registry. Many families struggle with leukemia and you may not match Mike perfectly, but you may match another daddy, husband, son or brother of another family praying for a perfect match. Mike’s life will be saved because someone registered. If you are interested, please contact your local blood donation center or American Red Cross to get more information on becoming a registered donor. I understand that this is a personal decision for each person individually, so please do not feel any pressure if you are not comfortable with registering.
I can not thank everyone enough for all of the love and support we have received this past week. Please do not forget to keep encouraging us through out. We draw a lot of strength from your words, your calls, texts, emails and of course prayers. Even if I don’t respond right away, I am getting it and it is always always appreciated.
I was touched to see that so many of you enjoyed watching the video of our journey. It’s my way of putting all of my thoughts and experiences together to share with everyone what we are going through. If you missed the 50,000 emails that came yesterday, the link is: http://www.youtube.com/watch?v=KrLf4qhOpZU
There is also another video I made a few months ago of Mike and I – that link is: http://www.youtube.com/watch?v=zYH45qI22gc
And one I made of Jadeyn: http://www.youtube.com/watch?v=ASVLfVJjPus
I have been working on one for Zack, but I am missing a picture I really want to include, so I have to find it first!
Friday, August 27, 2010
Friday, August 20, 2010
not the best news ... :(
Well… it’s been a long day. We had an appointment today to get the results of Mike’s most recent bone marrow biopsy. Not exactly the news we were hoping for… His doctor said that he has had a relapse and the leukemia has come back. She is grateful that it was caught fairly early and the cells are only at 15%. This next week he will start a 4 week intense chemo regimen that will (hopefully) kill the leukemia cells and get him into remission. Once a bone marrow biopsy confirms that he has less than 5% cells, he will go in for immediate transplant.
I’m just going to be real… I have no idea how to do this. I don’t know how God thinks we are strong enough to go through another year of this nightmare. Mike has been just starting to feel good and we were just starting to get into a normal lifestyle. We just got the kids set up for home-schooling and now I am going to have to completely re-adjust their schedule and go back to life at a hospital and seeing Mike suffer even longer… I feel like everything is just starting all over again, like last summer. Part of me wants to be so angry and cry and scream and yell… but I know that is not going to help Mike… and it’s not going to help me or the kids. Through all this I still have faith in a God that is bigger than all of it. I know that Mike will pull through and eventually we will be able to put all of this behind us. I so look forward to those days!!
Right now, we really need prayers…lots of them! Specifically, please pray that this chemo phase will put him into a full remission, that we will find the money to get his dental work done, that we will find an insurance company that will give us a policy because his Cobra expires in November; please pray that there will be NO complications through the transplant process (including divine protection from graft-host disease), that Mike will stay strong and that somehow we all keep our sanity, peace, joy and faith through everything.
Much love and thanks to everyone who has been such an encouragement and support since the very beginning. I have a feeling that we are really going to need everyone to pull together for us over the next few months.
I’m just going to be real… I have no idea how to do this. I don’t know how God thinks we are strong enough to go through another year of this nightmare. Mike has been just starting to feel good and we were just starting to get into a normal lifestyle. We just got the kids set up for home-schooling and now I am going to have to completely re-adjust their schedule and go back to life at a hospital and seeing Mike suffer even longer… I feel like everything is just starting all over again, like last summer. Part of me wants to be so angry and cry and scream and yell… but I know that is not going to help Mike… and it’s not going to help me or the kids. Through all this I still have faith in a God that is bigger than all of it. I know that Mike will pull through and eventually we will be able to put all of this behind us. I so look forward to those days!!
Right now, we really need prayers…lots of them! Specifically, please pray that this chemo phase will put him into a full remission, that we will find the money to get his dental work done, that we will find an insurance company that will give us a policy because his Cobra expires in November; please pray that there will be NO complications through the transplant process (including divine protection from graft-host disease), that Mike will stay strong and that somehow we all keep our sanity, peace, joy and faith through everything.
Much love and thanks to everyone who has been such an encouragement and support since the very beginning. I have a feeling that we are really going to need everyone to pull together for us over the next few months.
Tuesday, August 10, 2010
08-10-10 update
As summer is winding down, I thought it might be a good time to update everyone again…
This summer has been pretty fantastic, with very few bumps in Mike’s treatments and recovery. We were able to take a two week vacation up to MD to visit with our close friends and family. The kids had a blast with everyone and can’t wait to come up again. It truly was a very relaxing time for all of us. We want to say a special “thank you” to Mike’s parents for making it possible for us to fly up instead of drive. I don’t know how Mike’s body would have been able to handle 15 hours each way in the car! And “thank you” to everyone who gave us a place to stay, a car to get around or bought us meals, etc…!! You know who you are and so does God! We pray for blessings on each of you and your families!
In July we received some news that Mike’s most recent bone marrow results were less than favorable, so he had to go in this past Friday for another biopsy. We are praying that there is nothing to be concerned about and the report is going to come back that Mike is still in remission. We have decided that a bone marrow transplant would not be in his best interest at this point and feel confident that we have made the right choice. He is going to continue with his treatment protocol as planned which is: once a week he has to take 19 pills (usually on Thursday night or Friday) and once a month he has to go into the clinic for an infusion. This will continue for 2-3 years as he is in this “Maintenance Phase”. As long as his results are good, he will be able to completely finish the protocol and hopefully never have to deal with leukemia again.
I will be honest…there are hard days. Sometimes Mike has a negative reaction to the pills or infusions and gets very sick. I think there are times when he literally feels like he is dying. He will make a comment like, “hey, let’s go watch the sunset this week”, which is something I love to do, but never make time for. Unfortunately, I have not matured much in my ability to handle pain and suffering. My first inclination is to shut down, numb myself and just go through the motions to get by. Just the thought of not having Mike by my side is more grief than I can even begin to bear. I guess there are cycles through each of these stages. Sometimes I feel so strong and full of faith…other times, I am exhausted and afraid. I dare not mention the other drama going on in my family that is taking its toll on me. These situations are definitely taking us to the extent of what a person is made of – and beyond. I try to look at others who have a worse situation and thank God for all of my many, many blessings. I know that in Christ, we are more than conquerors and He has given us everything we need to overcome these trials. And when we get to the bottom of finding what we are made of, I’m sure we will find strength, compassion, hope, unity, love, patience, perseverance, and a victorious spirit.
On a lighter note…Mike is having more “good” days. He is able to get up and do more and he has gotten most of his hair back! :) We have decided to join the YMCA for all of the fitness programs they offer, so we are looking forward to getting into better shape in the coming months. We were blessed by the discounts they extend to families with medical disabilities. With Mike’s insurance premiums at $1200 and co-pays over $300/mo, every little bit helps! The kids are super excited to start a new dance year. They have been chosen for the competition team, so we will have a very full year of practices and competition performances. We have also decided to home-school them this year. I know, everyone thinks we are crazy…but we feel that this is in their best interest and if we feel overwhelmed at any time we can always put them back into public school. We are going to take one day at a time and see how it goes. My job is still fantastic and I am blessed with extremely wonderful bosses and co-workers. We are hard at work to kick off a fantastic fall for Legacies & Lifelines!
So, I guess that is all for now… we hope that you are all in good health and doing well! As always, thank you for all of your prayers and support. If gives us so much encouragement to know that our family is covered across the nation by people praying and believing that the best is yet to come and better days are just around the corner!!
Much love to all!! <3
This summer has been pretty fantastic, with very few bumps in Mike’s treatments and recovery. We were able to take a two week vacation up to MD to visit with our close friends and family. The kids had a blast with everyone and can’t wait to come up again. It truly was a very relaxing time for all of us. We want to say a special “thank you” to Mike’s parents for making it possible for us to fly up instead of drive. I don’t know how Mike’s body would have been able to handle 15 hours each way in the car! And “thank you” to everyone who gave us a place to stay, a car to get around or bought us meals, etc…!! You know who you are and so does God! We pray for blessings on each of you and your families!
In July we received some news that Mike’s most recent bone marrow results were less than favorable, so he had to go in this past Friday for another biopsy. We are praying that there is nothing to be concerned about and the report is going to come back that Mike is still in remission. We have decided that a bone marrow transplant would not be in his best interest at this point and feel confident that we have made the right choice. He is going to continue with his treatment protocol as planned which is: once a week he has to take 19 pills (usually on Thursday night or Friday) and once a month he has to go into the clinic for an infusion. This will continue for 2-3 years as he is in this “Maintenance Phase”. As long as his results are good, he will be able to completely finish the protocol and hopefully never have to deal with leukemia again.
I will be honest…there are hard days. Sometimes Mike has a negative reaction to the pills or infusions and gets very sick. I think there are times when he literally feels like he is dying. He will make a comment like, “hey, let’s go watch the sunset this week”, which is something I love to do, but never make time for. Unfortunately, I have not matured much in my ability to handle pain and suffering. My first inclination is to shut down, numb myself and just go through the motions to get by. Just the thought of not having Mike by my side is more grief than I can even begin to bear. I guess there are cycles through each of these stages. Sometimes I feel so strong and full of faith…other times, I am exhausted and afraid. I dare not mention the other drama going on in my family that is taking its toll on me. These situations are definitely taking us to the extent of what a person is made of – and beyond. I try to look at others who have a worse situation and thank God for all of my many, many blessings. I know that in Christ, we are more than conquerors and He has given us everything we need to overcome these trials. And when we get to the bottom of finding what we are made of, I’m sure we will find strength, compassion, hope, unity, love, patience, perseverance, and a victorious spirit.
On a lighter note…Mike is having more “good” days. He is able to get up and do more and he has gotten most of his hair back! :) We have decided to join the YMCA for all of the fitness programs they offer, so we are looking forward to getting into better shape in the coming months. We were blessed by the discounts they extend to families with medical disabilities. With Mike’s insurance premiums at $1200 and co-pays over $300/mo, every little bit helps! The kids are super excited to start a new dance year. They have been chosen for the competition team, so we will have a very full year of practices and competition performances. We have also decided to home-school them this year. I know, everyone thinks we are crazy…but we feel that this is in their best interest and if we feel overwhelmed at any time we can always put them back into public school. We are going to take one day at a time and see how it goes. My job is still fantastic and I am blessed with extremely wonderful bosses and co-workers. We are hard at work to kick off a fantastic fall for Legacies & Lifelines!
So, I guess that is all for now… we hope that you are all in good health and doing well! As always, thank you for all of your prayers and support. If gives us so much encouragement to know that our family is covered across the nation by people praying and believing that the best is yet to come and better days are just around the corner!!
Much love to all!! <3
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