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!!

...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!

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!!

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!

the start of Phase 3

I hope everyone is doing well. Here is our latest:

Mike started Phase 3 on Wednesday with as CT scan. Tomorrow he has an appointment with his Hematologist to review all of his results thus far and current labs. On Monday he is scheduled to be admitted for high doses of chemo. He will need to stay in the hospital for 4-5 days so that they can monitor his responses to this new drug. If all goes well, he will be released for the weekend and then re-admitted the following Monday for another round. They are giving him off the week of Thanksgiving - :-) - so that he can be home with the family. He will have two more weeks after Thanksgiving that he will be admitted for the same treatments. So the majority of November and the beginning of December, he will be staying in the hospital. After that, he will have off for Christmas and New Years and then return for treatments after the 1st of the year. Most of his hair has grown back, but he may lose it again with this next round. We shall see…

In the meantime, Mike has been feeling well for the most part. He suffers from headaches occasionally and his energy levels are still very low. We decided to let the kids take off from school today for a trip to Orlando. We have season passes to SeaWorld, so we spent the morning there and then went to Downtown Disney (lego land, shopping, restaurants – SO FUN) for the afternoon. We had a lot of fun, but I think that all of us are really worn out (especially Mike)! It was a very nice day for all of us to just enjoy being together.

The kids are doing great in school and staying busy with their dance schedules as usual. They are very excited for the coming holidays and all of the festivities that come with them, including our trip to MD. :)

Another GREAT BIG THANK YOU to everyone who planned, participated and supported our Bull Roast Benefit. We raised several thousand dollars, which helped to relieve some of the financial burdens on us for a while. I don’t know how we would get though this time without all of your support!!! We appreciate all of you so much!!
We love you all!!

October 25 Update

I am so sorry that this update has taken so long, but it has been crazy busy here!

We had a wonderful time visiting our friends and family in MD. We wish we had more time to spend with more people …it just goes by SO fast!! Mike has been feeling fairly well – considering. Traveling took a hit on his energy levels, but he has been getting plenty of rest since we have been back. The Bullroast Benefit was completely amazing. We are still so overwhelmed by all of the support we received and by how many people came out on our behalf. Everyone worked so hard to make it a success and we are so grateful!! It has lifted a huge burden off of our shoulders and the family who have been a financial support to us since all of this began. THANK YOU SO MUCH!!!!

Mike had an appointment last Friday and got the results on his most recent bone marrow test: all is well. :) He also received his next treatment plan for Phase 3. It is a little more than we expected but I am sure it will all be okay. He will be off for 2 more weeks and then has to be admitted to the hospital 4 times in the month of November for up to 4 days at a time. They are starting him on higher doses of medication and will need to monitor him day & night to make sure his body responds well. He will be admitted every Tuesday and be released sometime between the following Thursday and Saturday. I am praying that he will not miss Thanksgiving at home. In December he will require treatments 2-3 days each week. The doctor approved a little vacation around Christmas, so we have booked our flights to come to MD on Dec 23. :)

Thanks again to everyone who have continued to encourage us with cards and prayers, phone calls and donations!! We love you all so much and couldn’t imagine trying to get through this time with out all of you by our side. <3

To view more pics from the Bullroast, pls click the following link:

share.shutterfly.com/action/welcome?sid=0AZMWLNy5cuWLGeg

October 1 update - back at the hospital tonight

Today I am writing from the hospital. I’m not gonna lie – it’s been a rough week. It started with Mike’s counts being really low, so they have postponed chemo treatments until next week. He still has to go every day to get a neupogen shot and blood work. I had my dental surgery on Tuesday morning and everything went well, but I have been so disoriented. I have not been able to take the pain meds because I have to work and be able to take care of the kids, so I just push through with the pain. I had a root canal, 2 crowns, 5 fillings and they had to remove a root tip from a previous extraction. I have 3 stitches, so I can barely open my mouth. Mike’s head aches have been getting worse as the week progressed so they ordered him to come in again, this evening. They are concerned about internal bleeding because his platelets are so low – they just want to make sure his brain is clear. They also said they may have to do a blood patch from where he has had so many spinal taps.
My back has been in distress this week – it’s yelling at me to get back into physical therapy, which I have been putting off due to a hectic schedule. I saw my regular doctor earlier this week and she is on top of me about making it a priority. I will…tomorrow. I guess this is a plea for prayers. We are both so exhausted and just really hoping for good results tonight so that we can go home and sleep in our own beds. I will update everyone again if anything happens.

On a brighter side, it is October (:-D yay!) and the weather is really taking a nice turn in Tampa. I love the crisp air in the mornings and evenings. It has worked wonders in lifting our spirits throughout this week. Also, with our Bullroast right around the corner, we are SO excited to see many of our MD friends and family!! THANK YOU SO MUCH TO EVERYONE WHO IS ORGANIZING AND COORDINATING IT – I know it has consumed the lives of my closest friends/family up there. If you are able, please come out and say hi – you can email Angie for tickets (anjers@comcast.net). We would love to see you there!!

Thanks again to everyone…much love to all.