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!

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!!

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!

Thursday, November 5, 2009

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!!

Sunday, October 25, 2009

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:

Thursday, October 1, 2009

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.

Saturday, September 26, 2009

Hello everyone!

So far Phase 2 has been going fairly well. Mike's energy has been diminishing slowly and he has had a lot of headaches, but other than that he has been in good spirits. All of his spinal taps have come back with favorable results, so we are thankful for that! His platelet count dropped down to 66 this past week, but the doctors are saying that is pretty high for this stage of treatment. He goes in for treatments every Tuesday, Wednesday, Thursday & Friday. Tuesdays usually run about 12 hour-days between his lab work, spinal taps and chemo treatments. The other days run 3 -5 hours long, depending on the treatment. We had an appointment yesterday with the Oncologist and she seems pleased with his progress thus far. He will have one more week on Phase 2 and then another bone marrow biopsy to confirm that everything is still on track. He will then get a small break (about 3 weeks) before beginning Phase 3. Phase 3 will be 2-3 days/week for about 3 months. After that the doctors we re-assess his condition, but his treatments should become less frequent as his body goes into remission.

I can not even tell you what a nightmare this has been for us. We thank God everyday for the many blessings in our lives, but some days we just feel completely flipped upsidedown and then violently skaken. We are doing our best to remain positive and trust that God has a plan for us. We are challenging ourselves to learn from this trial and become better people. In many ways, I have learned to embrace the brokeness and the pain of these circumstances, rather than numbing myself to it just to get by. I know that everyone deals with pain differently...I just feel that, for me, I have to let myself cry through the hurt and then channel that energy into the fuel that presses me to become better and to help others who are struggling. We are working together as a family, one day at a time, to look forward to the future and come out of this stronger.

When Mike was diagnosed, a close personal friend of mine (who also happens to be my employer) wrote something about us that I would like to share:

The Face of Cancer So this is the face of Cancer… Smoky blue eyes. Great smile showing barely a sign of entering middle age…because he is only 31. Over 200 pounds of strength, ready to dedicate his career to the police academy. Two young mouths to feed. A gutsy, and so pretty, 30 year old wife with a hard fought and ironclad faith in God. Not a sign of warning. Like a sudden, destructive wildfire, acute lymphonic leukemia seemed to ignite overnight. And still it burns, as we stand on the street looking at the inferno, helplessly praying this family makes it out alive. Somehow, I know they will. For this face is also the face of faith. When he looks for guidance it is not in the mirror. His face looks up to the Lord. Cancer can never claim him. Only his Father can.
By Sheryl Hunter

If it touched you, like it has many others, you are most likely reaching for the tissues. She is a beautiful writer and I am very grateful that she has shared her gift with us, to encourage us through this season of our lives. Thank you Sheryl!!

I dont want to keep bombarding everyone with info about the Bull Roast, but a lot of people are emailing me and asking questions. Please refer to our previous blogspot (www.johnsonfamilyjournals.blogspot.com) entries or our group page on Facebook regarding the details, and if you still have questions, email Angie (anjers@comcast.net) or Danielle (dmullhausen@yahoo.com). I am not in the planning loop and I apologize that I am not able to answer everyone's questions appropriately.

I do know that tickets are being sold for a 50/50 raffle for $5/each or 3 tix/$10. Winner gets half of the raffle (minimum $500 prize). If you are not able to attend, but would like to purchase raffle tickets, please contact Danielle. There are also many other items that will be raffled or put up for the Silent Auction - Danielle will be publishing a list closer to the event.

MANY THANKS TO EVERYONE for all of your efforts & contributions to help our family get through this time. We love you all!!

Wednesday, September 16, 2009

Phase 2 - so far

Hey everyone! I hope you are all doing well!!

Phase 2 has been going fairly well for Mike so far. He has had 2 spinal taps and we were very happy to find out that Moffitt uses digital imaging to do these procedures, so they are very accurate. Mike has a lot less stress going into them, knowing that he doesnt have to fear that they will accidentally hit something while they are in there. He had a few rough days so far - mostly on Tuesdays which are usually 12 hour days at the clinic and he had some vomiting & sleepiness as a side effect to his treatment last week. Other than that, it has been pretty smooth sailing. His spirits are up and he seems to be getting around well. His achilles tendon has healed and he is no longer having pain to walk on it. (Thank God!) We are looking forward to another visit from his mom this week! She will be flying in tomorrow and staying until next weekend. Everyone has been a wonderful help here with running Mike to appointments, cooking meals and taking care of the kids, but it is always nice to have Mom around! :)

We were able to take a little getaway to St. Pete for a few days during Labor day weekend, thanks to some friends who let us borrow their condo. It was a wonderful little break for us to just enjoy time together. The kids enjoyed playing in the pool and at the beach. Jade has established quite the shell collection. It was nice to just set everything aside and laugh and play together.

I am schedule for my dental surgery Sept 29. I am not looking forward to it, but at least I will be able to get it behind me and not be in so much pain. I am very excited about my job. There are so many things that I love about it, I feel very blessed. I am also SO excited about our upcoming trip to MD in October. I have been missing so many of you and I cant wait to get my fill of all of your hugs and kisses again!!!

The kids are staying very busy with school and dance classes. Jadeyn has decided to audition for the childrens choir at church and be a part of the Christmas Production. Zack is also auditioning for the youth worship team. They both love to sing! Although I am hesitant to add anymore to our already busy schedules, I am happy to see them spending their extra time being active and developing their talents, rather than sitting in front of a television.

As a family, I think that each of us has allowed these hard times to bring us closer and develop us as people. I know that people who experience trials usually end up with a greater appreciation for life and love and go on to live very rich lives. For that, I am grateful for each trial. Although they are difficult, they are worth what we are gaining as individuals and as a family. :)

The Bull Roast information was included in my previous update email, but Angie has made some revisions, so please read over the following information carefully if you are planning to attend.

Michael Johnson Bull Roast & Silent Auction Benefit
Saturday, October 17 6:00-9:00pm, MaGerks Pub - Bel Air, MD

In order to fit as many as possible this event will be cocktail style. There will be several booths and a large bar to sit at, but we will not be selling ‘tables’.


Pit Beef
Pit Ham
Chicken Fingers
Crab dip
Franks in Tuxedos
Cheese Tray
Crudite Platter

OPEN BAR to include:
Domestic bottles
Rail drinks
House wines

DJ, Money wheel, 50/50 raffle, Silent Auction, Door Prize

Please contact Angie to reserve your tickets ~
Mail check ($40 per ticket) made payable to the "Michael Johnson Benefit Fund" to:

Michael Johnson Benefit Fund
c/o Angie Lane
P.O. Box 542
Bel Air, MD 21014

Your name will be added to the guest list and your tickets will be held at the door. Please include your e-mail address and you will receive a confirmation of your ticket request.

* If you would like your tickets mailed to you please include a self addressed stamped envelope.

If you have any questions or would like to receive your tickets in person please e-mail Angie at: anjers@comcast.net

**We do not expect to have any tickets for sale at the door. However, if there are any left they will be available at $48 each.

*If you are not able to attend, but would like to make a donation, please mail checks made payable to the "Michael Johnson Benefit Fund" and mail to Angie at the address above. Or you may also use a credit card via Paypal by following this link:

* If you own a business or know someone who may be able to donate products or services to our Silent Auction, please contact Danielle ~ dmullhausen@yahoo.com

Donations are tax deductible. TIN: 27-0881674

Thank you for helping us in making this a successful event for the Johnson Family!!

Friday, September 4, 2009

Today we went for Mike’s follow up visit from last week’s bone marrow biopsy. The results came back favorable – at this point his body is in remission – YAY!! :-) Phase One accomplished all that we hoped and his labs all look good! On Tuesday he will start Phase Two which consists of weekly spinal taps and 4 chemo treatments each week. We will not know whether he will need infusions during this phase until he gets into it. The 2nd & 3rd weeks will be most intense (Sept 22nd – Oct 3rd), so please be praying that his body will respond well to the treatments and the side effects will not be too extreme. Mike also injured his Achilles tendon this past week while on a bike ride. The doctor wants to keep an eye on it so that the muscles do not bleed while undergoing treatment. If he does not start to feel better by next week, she is going to send him in for x-rays. Please also keep him in prayer this coming Tuesday, the 8th. It will be a very long day for Mike as he starts this next phase and will be at the hospital from 8am – 7pm.

I have been feeling really good. My back has not been bothering me. I still can not get full swing into my exercise routine, but that’s ok with me ;-). Just kidding. I am looking forward to getting full use of my muscles and getting in shape again. As far as work goes, I have decided to accept a salaried position with a client who has kept me busy for almost a year now. I strongly believe in her business and the compassion she has people. It is filled with purpose and unique perspectives. I am very excited to take this step with my career and have a strong faith that I will gain valuable experience.

The kids have been enjoying school and dance. It has really helped us to get into a good schedule. We have our family dinner everyday at 4:00, which is SO nice. It gives us quality time with the kids everyday and we are not eating too late or grabbing fast food in the midst of some of our crazy evenings.

Overall, it has been a fairly quiet month and all is well. We did receive notice from SSA that Mike qualifies for disability and his benefits will start in January 2010…a long way off, but still an answer to prayer. Thanks to everyone that has been lifting us up and supporting us in SO many ways! Much love to all!!

Here is the info for the Bull Roast & Silent Auction on October 17:
(I also have flyers in case anyone wants to print them out.)

Michael Johnson Leukemia Benefit Bull Roast & Silent Auction
Saturday, October 17, 2009
6:00 PM – 9:00 PM
MaGerks Pub – Bel Air, MD

TICKETS: $40.00 *Cocktail Style

Menu: Open bar to include:

Chicken Fingers Domestic bottles
Pit Beef Drafts
Pit Ham Rail drinks
Crab dip House wines
Bruschetta Coffee
Franks in Tuxedo Soda
Cheese Tray Tea
Crudite Platter (veggies)

DJ, Money wheel, 50/50 raffle, Silent Auction, (door prize maybe)

Please contact Angie to reserve your tickets ~ anjers@comcast.net

*If you are not able to attend, but would like to make a donation, please contact Danielle ~ dmullhausen@yahoo.com. Thank you!!

Wednesday, August 26, 2009

bone marrow procedure went well

Just wanted to update everyone and let you know that Mike's bone marrow biopsy procedure went very well this morning. The staff was wonderful and Mike experienced very little pain. We will get the (prayerfully good) results next Friday the 4th. He will most likely start phase 2 treatments around the 10th. We still have not gotten a response from SSA. They told us yesterday that we should hear something any day now.

Lots of people have been asking about my back and teeth...I always forget to post my updates with Mike's. I have contacted a PT office close to my house, but we are still waiting for paperwork to be faxed from MD. I dont have much pain in my back these days. It seems like the more active I am, the less it hurts, so I am trying to work back into my exercise routine a little at a time. I saw the dentist this week for my sore tooth and it turns out that I need $2000 just to save the tooth and another $700 worth of work. I am hoping to get the surgery done soon. In the meantime, they have given me antibiotics, so the pain is not as bad as it was. I am thankful for that.

We are just standing together, believing God that healing is coming and we are going to get through this with a great testimony; also believing that all of this is contributing to developing our character and compassion for others. Thanks to everyone who continues to stand with us.

If you own a business or know someone who is able to donate products or services for our Silent Auction, please contact Danielle - dmullhausen@yahoo.com - *put Mike's name in the subject line. THANK YOU THANK YOU THANK YOU!!

Angie is organizing details for the Bull Roast on October 17. We should be posting all of the info very soon!

Tuesday, August 18, 2009

Preparing for Phase 2

Hello everyone. I hope you all are doing well.
(Last Week)
We have been home for over a week now and starting to feel a little more settled. Thanks to Mike's mom, we were able to get all of the shopping for the kids school supplies and uniforms. :) That makes me feel better to know that it is done and my kids have everything they could possibly need to start school. I spent all last week on the phone with different agencies, insurance companies, banks, doctors, hospitals, etc... We still do not have a decision from SSA regarding Mike's disability, but we are being assured it is in the works now. We have had so many different agencies "lose" our paperwork, it is overwhelming. At one point, I just looked at Mike and said that God must really be stretching me in this area, to be more patient, because it is such a recurring problem with everyone I try to communicate with. It's unbelievable! It's hard to have to face this illness as it is - with no income and the many other struggles associated - but to have these agencies misplacing our important documents, just adds to the stress. I know that God knows our limits...and He wont give me any more than I can handle...but I sure feel like I am very close to the breaking points sometimes. A visit from my best friend came at perfect timing and we had a fabulous weekend together! Mike has been feeling really good the past few days, so it was a great opportunity to refresh and refocus.

(This Week)

This morning we went to Moffitt to meet his new care team and get an idea of where we are going from here. They did some lab work while we were there and everything came back good. He has some elevated levels and some swelling in his legs & neck, but the doctor thinks they are being caused by the medication he is still taking. He is scheduled for a bone marrow biopsy next Wednesday (26th) and then has a follow up visit on Friday (28th). This test is basically to confirm that his body is going into remission and Phase 1 accomplished all that was intended. He will most likely start Phase 2 treatments the first week in September. The hospital is about 30 miles from our house and he will have to go 4-5 times a week. During this phase he will have several chemo treatments, 4 spinal taps and possibly another bone marrow biopsy. Mike is glad to have a few extra "good" days, but also ready to get through all of the treatments and get all of this behind us.

My sister (Angie) has been very generous to coordinate a Bull Roast & Silent Auction to benefit our family. Please mark your calendars for Saturday, October 17. It will be held in Bel Air, MD. I will send more information as it becomes available.

Thanks to everyone for your continued prayer and support! We appreciate all of you!!

Saturday, August 8, 2009

getting settled

wow...what a week. Its hard to believe that only 5 days ago Mike was having surgery in MD and now we are home in Tampa and everything is unpacked, like we never left.

Mike's surgery to have the port put in his chest went very well. He was a little sore, but for the most part recovered very quickly and was feeling better. We said some very emotional good-byes to our loved ones in MD and flew home late Wednesday night. It was very strange walking into my house. I felt ike I was visiting someone else - not coming home. I looked at the pictures on the wall and walked through each room and really just felt so odd. It took me a good while to reorient myself and feel settled.
Thursday was a very emotional day for both of us. I think that the weight of all that we had experienced since the last time we had been home was finally sinking in. I was also very uneasy about the kids and Mike's mom being on the road, making their way through the 1000 mile trip. It's moment like that when I just have to recognize that my life is in the hands of a very capable God and try to find some kind of peace in trusting Him and His plan for us. It's not always easy. I think that knowing the right answers and applying them during trying times are two totally different things. People can tell you what you are supposed to do and feel, but unless they have been there, it is impossible for them to understand what you are facing and the struggles within. Dont get me wrong, I completely appreciate everyone's love and compassion through this time. I think for myself, it is a humbling realization that I should not have expectations of others and impose my thoughts of how they should be feeling at times like this. For that, I am thankful that this is making me a better, more compassionate person.
Yesterday we were treated to a maid for the day. We both worked non-stop from 10-5 getting my house completely organized and disinfected. It is literally spotless. THANK YOU SO MUCH SHERYL!!!! IT feels so good to know my deep cleaning has been done and it is one less thing I have to worry about as Mike faces round 2 of treatments. Unfortunately, I am not the type of person that can sit & watch someone else clean my house, so I worked along side of her and over-did it a little bit with my back and I am feeling it today. I dont think I will get off of the couch too much today. I am thankful that Mike decided to take the day to go to the Tampa Gun Show. I am hoping that some time out of the house and away from things will bring him some refreshing.
So, now that we have been here a few days, the kids and the dog have all been re-united, and everything is clean, we are feeling much better. Our Tampa gang stepped right in to welcome us home with a cleaned and stocked fridge, clean laundry, flowers & balloons. (Samantha made paper flowers since Mike can not have fresh flowers. I will try to attach a pic if I can figure out how to do it cause they are amazing.) Sam has also been making us dinners every night and bringing her smiling family over to brighten our home with love & laughter.
We plan to take this week to rest and relax before things get crazy again. We are going to meet the USF Moffitt doctors next week and Mike will most likely start his treatments the week of the 17th. I just found out that the kids dont go back to school until the 24th, so we have an extra week I was unaware of. Hopefully we will get in a couple of beach days and maybe a trip to SeaWorld or Busch Gardens before then. I plan to ease back into work this week and hopefully be full swing by the time the kids go back to school.

Please direct your prayers toward our financial situation, as we have not heard anything from SSA regarding disability yet and I do not want to be a burden on others to get us through. We just need a quick response and a check from them ASAP and a decision from our mortgage company to extend our payments. This is our greatest need right now. Going from $9000/monthly income down to $1000/month has been difficult to say the least. Also, continued prayers for healing, Mike's body to respond well to Phase 2 and for our family to get into a healthy routine from day to day. Thank you all for your continued encouragement and support. This is a long process and we are grateful that we have not been forgotten.

Monday, August 3, 2009

so far so good

Last week Mike went for blood work almost every day. He received blood transfusions Wednesday and Thursday. On Friday they said that all of his counts look good and Phase 1 accomplished everything that we hoped it would. Today he goes for blood work just to check his counts before his port-cath surgery tomorrow. On Wednesday we will be flying home together. His mom is going to drive my car and the kids back on Thursday. Please pray for a safe trip for all of us. I am trying to let God's peace comfort me that I am not able to drive them myself and they will be on the road that long without me. (I guess its a mom thing.) I know they are in good hands...I just wish I was able to do it myself.
I started Physical Therapy at the hospital last week and they came to the house yesterday. I will have a few appointments with them before we go back to FL and then transfer to a service in Tampa. I have been getting around a little better. The PT is painful when I am doing it, but I always feel better within a few hours.
The kids start school & dance on the 17th and I plan to get back to work ASAP. I am desperate to feel some level of normalcy in our lives. We will meet with the Moffitt Cancer Center in Tampa the week after we get back to arrange Phase 2 of his treatments. Phase 2 is 5 days (M-F) every week for 4 weeks. It will be very intense as far as the time demand, but the drugs are not as harsh as those used during Phase 1. We are continually praying that his body will accept the treatments and respond well. After 4 weeks on Phase 2, he will transition to Phase 3 which will be 2 days every week for 3 months. Phase 4 will only be a visit every few weeks for blood work and he will have to do that for about 3 years. There is a 30% chance that he will never deal with leukemia again. We are believing that he will fall into that 30%. :)
It has been so good to spend some time here with friends and family. Obviously, we wish that it had been under better circumstances and could have had more quality time, but we appreciate everyone so much and the time that we did get to have. We have very mixed emotions about going back to FL. This trip really reminded us of all of the loved ones we hardly ever see and has us facing some major decisions about whether we should try to sell the house and move back to MD. It all comes down to God's perfect plan for our lives and what He has in store for us. We will continue to be obedient to following His calling for our lives, but praying that it will allow us to see our loved ones more often.
Thanks to everyone for all of the prayers and support. We love you all so much!

Thursday, July 30, 2009

an evenful day

Yesterday I could not get out of bed hardly at all. Around 6am I crawled to the bathroom and spent about 30 minutes trying to get on the toilet. When I tried to stand I took out the bathroom towel rack and hit the floor and eventually crawled back to bed. By 9am I could not move at all. Mike had a clinic appointment so we had to call his mom at the last minute to take him down there. I called a chiropractor and asked what their suggestions were. They told me to try to take enough medicine to get comfotable and come to their office. I took some muscle relaxers and a pain pill - so by 10:45 I was able to crawl to Danielle's car and sit backwards kneeling on the floor. Once at the office, they put me in a wheely chair backwards and pushed me into the office. The doctor did some physical therapy but I was still unable to stand or walk. So they called 911 and sent me in an ambulance to Upper Chesapeake. An MRI showed a (ruptured) herniated disc. I was very sick yesterday from all of the meds and not eating, but was more comfortable by evening. Danielle stayed at the hospital with me last night and took good care of me. They started me on a steriod to control the inflammation and with the pain pills I was able to get up several times to walk to the bathroom. I saw the Occupation Therapist this morning, she helped me with basic ways to sit, stand, roll, get dressed, etc. The Physycal Therapist came in and worked with me for about 30 minutes. It didnt really hurt, but now I am very sore from moving so much this morning. I am waiting to see the Neurosurgeon to tell me whether he thinks I need back surgery. That will determine when I get to go home. I will continue Physical Therapy regardless.
While I was having so much fun yesterday, Mike went into clinic for a blood draw and they determined that he needed a blood transfusion. This is all normal stuff that happens during chemotherapy, so there is nothing to be alarmed about, but the less amount of transfusions he gets, the better his body will continue to respond to his treatments. So we pray for minimal transfusions. They want to keep a closer eye on him so he is at clinic again today and tomorrow. He is still scheduled for his port-cath surgery on Monday. Mike's sister is taking the kids until Saturday, so I am grateful knowing they are ok while I am here and he is there.
I had planned to leave on Tuesday to go home and Mike was flying home on Wednesday, but now everything is up in the air again. I have no idea when I will be ready to make that drive.
Also, my cell phone broke on Monday so I have not been able to call, receive calls or text anyone all week. I apologize if you were not contacted personally about all of these happenings, but Mike and I have very little control over who gets called and when. Mike's mom dropped off my phone yesterday to get the replacement ordered, but wont have it until later this evening or tomorrow.

In light of all of this craziness, I feel such a peace of knowing that God is still God and He is in divine control. These things will not get us down, only make us stronger and better people with more love and compassion for others. It's all good. I know it will all be worth it someday. :) We are getting better everyday and before you know it, we will be back up and living normal healthy lives.

Tuesday, July 28, 2009

This past week was pretty rough. Mike did not have too many moments when he was feeling well. He was actually pretty sick most of the week. The doctor said it is from the additional chemo he recieved last Friday (the 17th). Yesterday he was throwing up at clinic from being so nauceous. :( His platelets were up to 185 (woohoo) but his plasma has been very low. He had to receive 4 bags of plasma Friday (24th) and 4 bags yesterday. The doctor said that is very normal, but he wants to keep an eye on him throughout this week, so he will have to go back on Wednesday and again on Friday. He is scheduled for his port-cath surgery next monday (3rd).

I am planning to leave Tuesday night with the kids to drive back to FL and fly Mike down on Wednesday with his mom. She will be staying with us for a couple weeks to help us get settled (thank God - cause I am going to need it!). The kids go back to school on the 17th so I will be pushing it a little to get them ready. I am trying not to panic. All of this also depends on how my doctor appointment goes tomorrow and how I feel next week. I hurt my back playing football in the rain on Sunday and I have been having a really hard time getting around. Hopefully I will be ok to make the drive by Tuesday.

Thanks to everyone for the continued support and prayers! Love you all!

Wednesday, July 22, 2009

quick little update

Mike went for blood work with morning and his platelets were at 138! :)

We also had some answered prayer with the SSA and Medicaid. At first no one would help me and I was getting a complete run around - after waiting two hours at SSA I was told that I have to do everything when I get back to FL and I could not get anything done or even started in the state of MD since I am not a resident. Then suddenly the sky parted and God's favor fell from heaven. They got me in for an appointment that afternoon (which normally takes a few weeks to schedule) and the nicest guy hooked me up with everything I needed to process Mike's application for disability benefits. He said that it normally takes 180 days for a decision, but my application would go through as a "QDD" and I could have a response by the end of this week! He also faxed all of my paperwork to FL Medicaid office for me. The next morning, I got a call from Medicaid saying they received the fax and explained that we are eligible for benefits and although there is a "share of cost" associated, they will help us to cover many of his medical bills. :) THANK GOD! And thanks to all of you for your prayers!! GOD IS LISTENING AND THE PRAYERS ARE WORKING!! These things dont just happen coincidentally. I know that with all of your prayers bombarding heaven, God must be faithful to move on them. We appreciate each one of you so much! Each prayer is so precious and I truly believe that each time you pray, you are opening the door for God to bless YOUR life and YOUR family as well. Prayers are seeds - and they will always bring a harvest, in one way or another.

Monday, July 20, 2009

last week of Phase 1

Mike is now in the final week of Phase one - he will go for blood work on Wednesday and a chemo treatment on Friday then he will have a two week break. We will use that time to transition back to FL and get ready to start the 4 weeks of intense daily treatments. I am a little overwhelmed when I think about getting back and trying to get the kids ready for school, etc... while he is undergoing those treatments. Thank God, his mom is going to fly down with him and spend a few weeks to help us get by.

Mike started a new drug in his chemo on Friday, unfortunately it made him very sick throughout the weekend. He has been very nauceous and tired. The doctor gave him a higher dosage for his nausea prescription. Today his platelets were at 86 (:-)) so he is showing improvement in that area and will most likely be able to have the port-cath surgery before we head back down south. That will make things alot easier on Mike so that he can take showers normally without worrying about the port getting wet or pulled and it will relieve me of the duty of flushing his lines daily. :) Its not hard, I just worry about germs every time I have to mess with it. Mike noticed some hair loss this morning...I really dont think that words can ever prepare someone for what they are about to experience while undergoing chemotherapy. We hear about all of the side effects, but living them is something totally different.

We are so grateful for everyone's contributions in every way - having great friends and family is really helping to lighten our burdens. I am so very grateful for the Fund that was set up to help us financially and the donations that are helping us to cover the many prescription costs, food on the run and gas costs that we are incurring each week. We literally would be charging all of it to credit cards if it weren't for your help. Please know how grateful we are and that we are praying for a mulititude of blessings upon each gift and giver! God never runs out of money & blessings so we know that it will be restored to you above and beyond!

Friday, July 17, 2009

a roller coaster day

I am writing from the clinic...watching Mike lay almost upside-down after his spinal tap...which went ok. Today we got the great news about Mike's bone marrow - that the Philadelphia Chromosone is not present in his blood which means that he is not likely to need a bone marrow transplant any time soon. We praise God for that! Also, his platelet count went up to 33 today so he did not need a transfusion as previously thought. All good news... :)

Then I got the report about his treatment change...instead of 5 days each month, its 5 days EVERY WEEK next month. I couldnt help but cry. I hate to be weak in front of Mike, I try to be strong and cry after I leave the room, but I was just so overwhelmed with that news. Just trying to figure out how to transition back to FL, get back to work, get the kids to and from school everyday and have him get to USF everyday (M-F) just makes me feel like I can't breathe. Also, found out that SSI (supplemental income) was denied because they thought Mike was getting unemployment benefits, but unemployment has not been paying him because he is unable to work. They said that the unemployment office has to fax over a letter of termination for SSI to be approved - yet I cant even get through to unemployment because when I call it says "I'm sorry, we do not have an operator available to take your call. Please try your call again later" and hangs up. How do I get them to fax something if they never answer the phone and dont return emails??? Then found out that Social Security Disability is still pending because they lost all of our information and we have to fill out forms by hand and mail them back. Unbelievable. I am trying to stay positive and not got so bogged down by all of these little things, but seriously?? How does this system expect families to get by?? I am sorry to vent all of this, but everyone keeps asking how things are going and I feel its best to be honest and not try to sugar coat everything all the time.
Today was a good day - we got some VERY great news and I just really want to focus on that. I have a wonderful husband who is getting stronger every day and will be around to walk our daughter down the aisle someday...he will be home in the evenings to tuck the kids in bed and read stories and play games, he will be at our dinner table and around for our birthdays and anniversary...for that, I am TRULY grateful.

Wednesday, July 15, 2009

A better week so far

The past few days have been pretty good. Mike has been feeling okay (not fabulous - but not miserable). He has been up and getting around a good bit. He has a good appetite and has been sleeping well most nights. He wakes up very early and can't go back to sleep once he is up, though. Yesterday, we were concerned because his port appeared to be clogged when I went to flush the line with heparin and we were not sure if they were going to have to redo the whole thing. Thank God, the nurse was able to unclog it during his clinic visit today. We were told on Monday that he would most likely need another platelet transfusion today because his counts have been so low - but when we got there today, they said that his platelet count actually went up 2 points since Monday (from 23 to 25) and he would not need the transfusion!! :) Your prayers are working!! We have still not gotten an answer back from the bone marrow biopsy. They called today and said the report was half way done but they could not give us any information until (most likely) Friday. We are praying and believing that its all good. We are going to attend a church service this evening. I know that miracles happen everyday - but especially in the presence of God.

My cousin Miranda and my Aunt Debi have generously offered to set up a meal schedule for us on the days that Mike is in the clinic (Monday, Wednesday and Friday). If you are interested in helping our family in this way, please contact Aunt Deb @ debimc@hotmail.com. It definitely helps to relieve our stress to have dinners taken care of on those days.

Thanks again to everyone for all of the support and prayers. We are truly overwhelmed by everyone's love for our family.

Monday, July 13, 2009

It's Gonna Be Worth It All...


July 13

Mike was released from Hopkins on Saturday after they ran several tests and gave him another platelet transfusion. When his platelets get very low, he is at risk for internal bleeding, so they were concerned that there might have been some bleeding in his brain or an infection in his body. Thank God - the rests came back clear. The only test we are still waiting on is the bone marrow biopsy. Everyone keeps asking, but we have not gotten the results yet. I promise to let you know as soon as we find out.
He seemed to do well throughout most of the weekend. He said he just felt very tired and weak. Yesterday his family came over for a picnic, so it was nice to be able to visit with them and have a "normal" kind of day.
Today we went to the cancer clinic at Hopkins so Mike could have his blood drawn. They told us it would be a quick "in and out" visit but it turned into a 3 hour ordeal with saying he needs platelets and then saying that he did not need platelets. Needless to say, I was a little frustrated. I think one of the hardest parts of going to the clinic is being surrounded by so many sick people. If you have ever been there, you know what I am talking about. And some of them do not keep a positive perspective and only sit and complain about how sick & dying they are...just not the funnest environment to spend a few hours... :-/
Anyway, we are home now and we do not have to go back to clinic until Wednesday. They changed his routine to Monday, Wednesday and chemo on Fridays instead of Thursdays. So it gives us an extra day each week to not have to be anywhere - I am thanking God for that also!

June 29 - July 9 Updates

June 29 at 3:53pm
Yesterday Mike went to Patient First b/c he was running high fevers & his his body felt very weak. They said that his platelet count was very low so they transferred him to Johns Hopkins for further testing. This morning he was diagnosed with leukemia...we do not have all ofthe details yet, but he will be in the hospital (at Hopkins inBaltimore) for 4 weeks while he receives his first treatment. Please continue to keep us all in prayer. We know that God is in control over all & He nevers gives us more than we can handle. We are praying that Mike's body will respond well to treatment & that this will all go as smoothly as possible. Thank you all so much for your concern & support.

June 30
Latest update on Mike: He has been diagnosed with Acute Lymphoblastic Leukemia. They are doing a bone marrow check today & a spinal tap tomorrow- at that time they will give him his first chemo treatment. Most of his treatment will be in a pill, but he will get the chemo injections once a week. They have decided to treat him here (at JohnsHopkins Bayview) and monitor his progress for about a week. If everything goes well & the test results come back good, he will be able to leave the hospital & do his treatments on an outpatient basis. Thanks again for everyone's prayers & support. We know that we have along road ahead of us, but we are keeping a positive attitude in walking it out & getting to the other side.

July 1
Today Mike was scheduled for the procedure to insert the port on his chest (for easy access to veins during treatment) but his platelet count dropped to 14 so they do not want to risk doing the surgery today & have postponed it until tomorrow. They are going to do the spinal tap & a platelet transfusion this afternoon. He just had an echocardiogram done. We are just continuing to pray for favorable results on all tests. Mike spends most of his time resting between the high fevers. He sweats an unbelievable amount during those periods...its hard to witness-especially when he is sleeping. It looks like rain just falling from his forehead.
PLEASE TAKE NOTE THAT MIKE CAN NOT HAVE FRESH FLOWERS IN HIS ROOM & SHOULD NOT BE VISITED BY ANYONE WHO MAY BE SICK OR HAS A COLD. If you would like to send cards, you may send it to 515 Ponderosa DrBelAir, MD 21O14. That is where we will be staying when we are not at Hopkins. Non-floral arrangments can be sent to Johns Hopkins Bayview 494O Eastern Avenue Baltimore, MD 21224. Right now he is in room 64O.I will keep you updated if he is moved to the 5th floor.Thanks again to each of you for your encouragment. Every word inspiresus each day. :)

July 1 at 8:20pm
Mike has been moved to room 542. The platelet transfusion went well this afternoon. He had a small outbreak of hives, but went away quickly with Benedryl. The spinal tap, surgery to install port & first chemo treatment are scheduled for tomorrow. Right now he is resting comfortably- praying for a decent night of rest.

July 2 at 8:06pm
Today was kinda rough. Mike's spirit was very heavy through out the day as he faced several procedures. His plaelet count was still too low to insert the port-cath so they just did a small line through his neck. This allows them to access his veins without sticking him everytime. He also had the spinal tap which the doctor seemed pleased with. He received his first chemo treatment & so far has responded well. (Thank God). The doctor gave him medicine to reduce his stress & now he is a lot more comfortable & less anxious. We had a very nice visit from a close friend which brought a lot of peace to Mike. We're just taking one day at a time, trying to stay positive & keep looking to getting past all of this.

July 4
Just want to let you know that Mike has been resting comfortably since Thursday evening. He slept quite a bit yesterday. The results from the spinal tap came back good, so we are thankful for that. The only thing we are still really waiting to hear about is the bone marrow biopsy. If that comes back with favorable results, he should be released from the hospital very soon to continue his treatments on an outpatient basis. If for whatever reason that test comes back and the results are not favorable, Mike will likely need a bone marrow transplant in the near future. So please guide your prayers toward getting favorable results: specifically that the Philadelphia Chromosone is NOT present in his blood. I am hoping to get Mike up and walking around a little today, and maybe to find a good window to try to catch the Harbor fireworks this evening. Some of the nurses brought in 4th of July goodies for the patients, so we are not missing out on too much. ;-) We are continually grateful for everyone's prayers and support through this time. Your encouragement is helping us get through every day.
We hope everyone has a very safe and happy 4th!! Do something for me & Mike today and take these moments to really appreciate those around you.
All my love, Kristy

July 6
Well, the weekend was fairly uneventful. Mike was mostly awake through Saturday and Sunday. We had several visitors stop by to lift our spirits and bring encouragement. We tried to watch fireworks from the hospital, but we really couldn't see them. We saw several displays over the bay, but they were really far away. It was nice to see something, though. When I left to get clean clothes on Saturday Iwitnessed an accident on 95 about 5 cars ahead of me at about 85mph. It was very scary. Many people pulled over so I kept driving, but Iwas very shaken. Life is just so fragile...
On Sunday Mike's platelet count dropped dramatically so they gave him another transfusion. He's been getting hives, but Benedryl takes care of it. He got up and walked around a little bit. It was nice to get him out for some fresh air.
Johns Hopkins has chosen our family for a "case study" to try to learn more about the disease and how it affects families on a personal level. There are times that Mike feels like a "guinea pig" because there are so many doctors in and out, but they have really taken timeto get to know us personally - which you dont see everyday. One doctor we spent some time with said that he felt like he was forever changed by getting to know us and that he would always keep our family in his prayers. He was a little choked up leaving our room, so I actually think he meant it. So there have been a lot of touching moments already. Some of the nursing staff has been amazing - just going above and beyond to do anything and everything for us. We dont get that from everyone here, but most of them have been really great. We are hoping to be discharged today. We know it is pretty busy at the hospital today, so it may end up being tomorrow. We are trying not to get our hopes up too much, so we are not disappointed. But weare REALLY looking forward to getting into the comfort of "home".They are setting us up with a home health nurse twice a week. He will have to come down to Hopkins for blood tests every other day and chemo once a week until the end of July - after that he will only get treatment one week out of every month, but it will last for a full week. At that point, I think we will head back to Tampa so we can get settled back at home and get the kids ready to start the school year & hopefully get back into dance. The hemotologist has a doctor-friendat Moffitt (Cancer Center in Tampa) who studied at Hopkins with him,so we feel very good about transferring his care there. We miss our puppy and I am certainly ready to get back to work soon.
Thank you again to EVERYONE for EVERYTHING!!! We appreciate you all SO much! Every text message, Facebook comment, email...everything just encourages us like you have no idea! Every word from each of you individually has done so much more for us than you could ever know. And to everyone taking care of my kids, my house, my mail, my lawn...I LOVE YOU & APPRECIATE SO MUCH!! May God bless you abundantly for your generosity and willingness to help us!
Love you all, Kristy

July 9
Mike has had severe head aches since yesterday morning & had a low fever this morning. When he came in for chemotherapy this afternoon the doctor decided to admit him until at least Saturday to keep an eyeon him. They are concerned that there may be an infection...so its better to be safe than sorry. It was a very hard day for Mike. But on a lighter note, we have a much nicer hospital room this time. We have not heard results on the bone marrow yet. Please keep praying.