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!