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!!

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’.

MENU:

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

OPEN BAR to include:
Domestic bottles
Drafts
Rail drinks
House wines
Coffee
Tea
Soda

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:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=6873197

* 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!!

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!!

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!

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!!

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.

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!