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!:)
Monday, January 25, 2010
Monday, January 18, 2010
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!
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!
Sunday, January 17, 2010
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
Tuesday, January 12, 2010
back into the swing of things and a happy new year
Hey everyone – I figured it was getting close to the time for another update.
We really hope that you all had a safe and happy holiday season. We were blessed to be able to spend Christmas and New Years with our family and friends up north. Mike did very well throughout his break from treatments and it was a big breath of fresh air for us to just feel “normal”. It was frigid, but worth it to be able to see everyone for the holidays. We came home to surprising temperatures – not much higher than those in Maryland. It’s been in the 20s and 30s here in Florida, but looking forward to a warm up back in the 70s by the end of the week! :)
Our first week back in FL gave us a large dose of reality as Mike had to start his treatments up the very next day and I had a full work week. He had to go everyday Tuesday-Sunday, sometimes for 8-10 hours at a time. It is obvious to see the strain that the chemo has put on him already. He has been very tired, but unable to sleep, which makes him grumpy (ssshhh – I didn’t say that!!) and the steroids he is on make him retain water and feel hungry constantly. We are attempting to start a healthier lifestyle with our food choices, starting with a 5 day juicer detox fast (we juice all of our fruits and vegetables and drink them) and then going into the South Beach Diet. Mike is trying to be on board with me, but his junk food cravings are hard to fight. He has done very well to kick the bad habits, as we both believe that our foods choices make a great impact to our overall health.
We had planned to take some time to meet with Dr. Hesdorffer at Johns Hopkins regarding a second opinion for a bone marrow transplant. Unfortunately we did not make that happen, but we believe that everything happens for a reason. We have not come to a definite decision, but we both feel in our spirit that the transplant is not something that he should proceed with at this time. The research on the transplant is still so sketchy and cannot promise a much better outcome than if he were to just finish out his chemotherapy plan. If new research comes available that shows that the transplant will give him better odds in the future, we will reconsider, but until then, we are going to continue with the treatment plan as originally scheduled. We both feel very good about that decision.
We are really looking forward to 2010. We have such high hopes that Mike’s health is going to recover and we are going to be a stronger and happier family through these trials. We have been inspired by Mike’s strength and determination and given a new perspective on the value of life and family. These trials are quickly turning into blessings, as I knew all along that they would. Please continue to pray for us as fight through to come out on top.
We love all of you so much and are so grateful for the support and encouragement that you have been providing along the way. We pray that 2010 will bring many blessings and fresh, new perspectives to you and your loved ones!
God Bless!!
Tuesday, December 8, 2009
...not the best news...
Hello everyone…
Today we met with Mike’s Hematologist at Moffitt. We knew that this appointment was going to tell us a lot about the direction of Mike’s treatments from this point. He has just finished the Intensification Phase and is scheduled to start the Consolidation Phase and then go into the Maintenance Phase. His doctor had just returned from a weekend conference where the focus was mainly on the latest research of ALL. Thus far the doctors have leaned away from the idea of a bone marrow transplant but today’s visit went quite differently. Based on the information she received at this conference, she is recommending that Mike see a transplant specialist. It does not guarantee that it will definitely happen – it is still Mike’s decision, but she wants to get the ball rolling in that direction. We talked for a few minutes about the process of a transplant and honestly, just talking about it caused tears to steam down both of our faces. … Even in that little room, I knew that we have to pull ourselves together and face whatever is ahead with faith and strength…we do not know exactly what lies ahead, but God does – and that gives us a peace that surpasses understanding.
We were also a little upset because previously we were told that Mike could take off the month of December without any problems and today she told us that she is very concerned about Mike going 4 weeks without treatment. We have already scheduled our trip to MD and were very excited about the idea of a break. Obviously, we will do whatever we have to for Mike to get better – we were just very disappointed. She was trying to work around our trip, but Mike decided that he wants to just take the break (even with the high risk) and resume treatment on the 5th of January. If all goes as planned he will have a full week of treatments the first week of January and then go back once per week. It will continue in that pattern every month until May.
We are going to get a second opinion regarding a transplant from Mike’s original Hematologist (Dr. Hesdorffer) at John’s Hopkins, and obviously we are going to pray very long and hard about this decision. We appreciate everyone’s concern and prayers for us. Please continue to pray for wisdom, guidance and peace in our lives.
As far as our insurance premiums, we have applied for a “Cobra Assistance Program” through Moffitt. If (it’s a BIG “if”) we are approved, Moffitt will assist with up to $400 of the $1140 monthly premium. It is still a huge payment every month, but honestly, every little bit helps at this point, so I am praying that we qualify for the assistance.
Mike is going back on Dec 21 for labs to be drawn and Mike to be “cleared” for the trip to MD. PLEASE pray that his body does well and they will not have any reason to keep him from going.
On a lighter note…our tree is up and our house is beautifully decorated for Christmas. We spend our free time making holiday crafts and goodies & singing Christmas carols. There is a tremendous peace in our home and we are very grateful for all of our loved ones (near and far).
If I don’t have time to do another update before Christmas, we wish you all a very blessed and joyous Christmas season and Happy New Year!
Today we met with Mike’s Hematologist at Moffitt. We knew that this appointment was going to tell us a lot about the direction of Mike’s treatments from this point. He has just finished the Intensification Phase and is scheduled to start the Consolidation Phase and then go into the Maintenance Phase. His doctor had just returned from a weekend conference where the focus was mainly on the latest research of ALL. Thus far the doctors have leaned away from the idea of a bone marrow transplant but today’s visit went quite differently. Based on the information she received at this conference, she is recommending that Mike see a transplant specialist. It does not guarantee that it will definitely happen – it is still Mike’s decision, but she wants to get the ball rolling in that direction. We talked for a few minutes about the process of a transplant and honestly, just talking about it caused tears to steam down both of our faces. … Even in that little room, I knew that we have to pull ourselves together and face whatever is ahead with faith and strength…we do not know exactly what lies ahead, but God does – and that gives us a peace that surpasses understanding.
We were also a little upset because previously we were told that Mike could take off the month of December without any problems and today she told us that she is very concerned about Mike going 4 weeks without treatment. We have already scheduled our trip to MD and were very excited about the idea of a break. Obviously, we will do whatever we have to for Mike to get better – we were just very disappointed. She was trying to work around our trip, but Mike decided that he wants to just take the break (even with the high risk) and resume treatment on the 5th of January. If all goes as planned he will have a full week of treatments the first week of January and then go back once per week. It will continue in that pattern every month until May.
We are going to get a second opinion regarding a transplant from Mike’s original Hematologist (Dr. Hesdorffer) at John’s Hopkins, and obviously we are going to pray very long and hard about this decision. We appreciate everyone’s concern and prayers for us. Please continue to pray for wisdom, guidance and peace in our lives.
As far as our insurance premiums, we have applied for a “Cobra Assistance Program” through Moffitt. If (it’s a BIG “if”) we are approved, Moffitt will assist with up to $400 of the $1140 monthly premium. It is still a huge payment every month, but honestly, every little bit helps at this point, so I am praying that we qualify for the assistance.
Mike is going back on Dec 21 for labs to be drawn and Mike to be “cleared” for the trip to MD. PLEASE pray that his body does well and they will not have any reason to keep him from going.
On a lighter note…our tree is up and our house is beautifully decorated for Christmas. We spend our free time making holiday crafts and goodies & singing Christmas carols. There is a tremendous peace in our home and we are very grateful for all of our loved ones (near and far).
If I don’t have time to do another update before Christmas, we wish you all a very blessed and joyous Christmas season and Happy New Year!
Wednesday, November 25, 2009
Happy Thanksgiving!!
Hello all!
It has been another crazy month, but things are moving along... Mike has completed the first two weeks of his treatments for the "Intensification Phase". He has been admitted the past two Mondays and stayed through the week while he gets high doses of methotrexate and asaparaginese. These treatments made him very sleepy and nauceous. When he would come home at the end of the week he would sleep through until about Saturday afternoon and then start to feel a little better. After being released last Thursday, he had to return on Friday because he was not doing well. Fortunately, he did not have to be admitted again. The doctor gave him off this week for the Thanksgiving holiday, but he had a follow up visit with her yesterday. Everything is moving along as planned and Mike has shown good progress thus far. She did spend some time talking with us about the possibility of a bone marrow transfer. She is attending a conference next weekend where she will hear the latest research and recommendations on transplants for patients with ALL. Mike is on the fence at this point because he is not being treated as child or as an adult. Of the ALL patients, less than 5% are in Mike's age range. He is getting a combination of the pediatric treatment plan and the adult treatment protocol. I admit, I was a little shaken as she described the 100 day transplant process and informed us that the fatality rate is up to 3% for patients who do not respond well. I pray that we do not have to walk down that road. Mike will return on Monday for one more week of this phase. After he is released next week, he will not have to return again for anything in December and his treatments will continue again after the New Year. :) YAY!!! We are all very happy about that!
As Thanksgiving is among us, we are especially touched this year by how grateful we are, for so many things. Mike & I are personally asking that each of you take an extra moment to reflect on the blessings that surround you everyday. If you have a job...if you are in good health...if your mortgage or rent is paid this month...if you have insurance...if you have friends and family close by to celebrate this day with...if you have a car that gets you where you need to go...if you woke up next to your best friend this morning...if your children are happy and healthy...if you have food in your pantry or refrigerator...if you are filled by loving relationships... if you slept in a bed last night...if you have heat for your home & socks for your feet... ...PLEASE take that EXTRA moment today...close your eyes and imagine your life without each of these things.... Open your eyes and BE THANKFUL!
We love all of you so much and we are certainly so grateful for each of you and all of your prayers and support. We pray that you all have a very happy,safe & blessed Thanksgiving!!
It has been another crazy month, but things are moving along... Mike has completed the first two weeks of his treatments for the "Intensification Phase". He has been admitted the past two Mondays and stayed through the week while he gets high doses of methotrexate and asaparaginese. These treatments made him very sleepy and nauceous. When he would come home at the end of the week he would sleep through until about Saturday afternoon and then start to feel a little better. After being released last Thursday, he had to return on Friday because he was not doing well. Fortunately, he did not have to be admitted again. The doctor gave him off this week for the Thanksgiving holiday, but he had a follow up visit with her yesterday. Everything is moving along as planned and Mike has shown good progress thus far. She did spend some time talking with us about the possibility of a bone marrow transfer. She is attending a conference next weekend where she will hear the latest research and recommendations on transplants for patients with ALL. Mike is on the fence at this point because he is not being treated as child or as an adult. Of the ALL patients, less than 5% are in Mike's age range. He is getting a combination of the pediatric treatment plan and the adult treatment protocol. I admit, I was a little shaken as she described the 100 day transplant process and informed us that the fatality rate is up to 3% for patients who do not respond well. I pray that we do not have to walk down that road. Mike will return on Monday for one more week of this phase. After he is released next week, he will not have to return again for anything in December and his treatments will continue again after the New Year. :) YAY!!! We are all very happy about that!
As Thanksgiving is among us, we are especially touched this year by how grateful we are, for so many things. Mike & I are personally asking that each of you take an extra moment to reflect on the blessings that surround you everyday. If you have a job...if you are in good health...if your mortgage or rent is paid this month...if you have insurance...if you have friends and family close by to celebrate this day with...if you have a car that gets you where you need to go...if you woke up next to your best friend this morning...if your children are happy and healthy...if you have food in your pantry or refrigerator...if you are filled by loving relationships... if you slept in a bed last night...if you have heat for your home & socks for your feet... ...PLEASE take that EXTRA moment today...close your eyes and imagine your life without each of these things.... Open your eyes and BE THANKFUL!
We love all of you so much and we are certainly so grateful for each of you and all of your prayers and support. We pray that you all have a very happy,safe & blessed Thanksgiving!!
Wednesday, November 18, 2009
prayers please
I am so sorry that it has taken so long to get this update out. With Mike in the hospital, I do not have much time for writing.
Mike was admitted last Monday for this phase of his treatments. As mentioned, he is being monitored for a minimum of three days after each treatment which requires for him to be at the hospital most of the week. He is getting high doses of methotrexate and asparaginase, which unfortunately, make him feel very sick. He got to come home late last Thursday and he slept most of the time through Saturday. He was feeling better just in time for Jadeyn's birthday party and was able to join us for the evening. (Thank God!:)) We also took the kids to see "The Christmas Carol", so it was a fun time to all be together. He was re-admitted this past Monday and we are now waiting for him to be released again. Tomorrow is Jadeyn's birthday, so we are praying that he may be released early. He will not have to return for treatments again until the week after Thanksgving. I am so grateful that he will be off for the holiday!
In the mean time, I have been busy working and keeping the kids active. We are focusing on spending more quality time together and cutting off the TV and other distractions. We are all happy about it, it just gives us a greater sense of life and each other. We are trying to eating healthier, more balanced meals and spend time reading together or doing something that requires movement. :) So far, so good. It feels like a little detox from all the garbage.
I do have a prayer request above the normal everyday stuff...
Earlier this week I received a letter from Mike's former employer who carries our COBRA plan for Mike's health insurance. We have been informed that we have reached the end of our 9 month stimulus period and Mike's premiums will now be $1140/month instead of $325/month, starting in January. Before I freaked out, I took it to God and just laid it at His feet. There is nothing I can do about it. We either pay the premium or Mike loses coverage. We do not have the extra money and we do not want to continue to financially drain our family and friends...so we are trusting God that somehow, some way things are going to work out. I am going to look into an individual plan for Mike through different companies and hope that we can find something cheaper. I am not worried. God has never let go of us - ever - and I know that He wont now, but we also know that prayers changes things. SO PLEASE PRAY ABOUT THIS!!
We love you all and are so grateful for each one of you!
Mike was admitted last Monday for this phase of his treatments. As mentioned, he is being monitored for a minimum of three days after each treatment which requires for him to be at the hospital most of the week. He is getting high doses of methotrexate and asparaginase, which unfortunately, make him feel very sick. He got to come home late last Thursday and he slept most of the time through Saturday. He was feeling better just in time for Jadeyn's birthday party and was able to join us for the evening. (Thank God!:)) We also took the kids to see "The Christmas Carol", so it was a fun time to all be together. He was re-admitted this past Monday and we are now waiting for him to be released again. Tomorrow is Jadeyn's birthday, so we are praying that he may be released early. He will not have to return for treatments again until the week after Thanksgving. I am so grateful that he will be off for the holiday!
In the mean time, I have been busy working and keeping the kids active. We are focusing on spending more quality time together and cutting off the TV and other distractions. We are all happy about it, it just gives us a greater sense of life and each other. We are trying to eating healthier, more balanced meals and spend time reading together or doing something that requires movement. :) So far, so good. It feels like a little detox from all the garbage.
I do have a prayer request above the normal everyday stuff...
Earlier this week I received a letter from Mike's former employer who carries our COBRA plan for Mike's health insurance. We have been informed that we have reached the end of our 9 month stimulus period and Mike's premiums will now be $1140/month instead of $325/month, starting in January. Before I freaked out, I took it to God and just laid it at His feet. There is nothing I can do about it. We either pay the premium or Mike loses coverage. We do not have the extra money and we do not want to continue to financially drain our family and friends...so we are trusting God that somehow, some way things are going to work out. I am going to look into an individual plan for Mike through different companies and hope that we can find something cheaper. I am not worried. God has never let go of us - ever - and I know that He wont now, but we also know that prayers changes things. SO PLEASE PRAY ABOUT THIS!!
We love you all and are so grateful for each one of you!
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