We are enjoying our first day home as a family of 4 in quite a while. We watched shows and played in the little back yard pool and ate popsicles. The boys played, played and played some more. Mark was in the hospital on Monday - Wednesday this week receiving Chemotherapy it was a short but potent stay. He feels about like he has the flu right now but is hanging on to the fact that he knows he will feel better again in a few more days. We are still in our 2 week cycles of Chemo treatment and hospitalization. Every other Monday through Wednesday or Thursday he is at the hospital receiving Chemo drugs. Then home for the remainder of 2 week cycle with home care if need be. Then we start over again. He will continue this pattern until we leave for the bone marrow transplant in Seattle.
We have found out that the "match" in Great Britain is willing to donate to Mark. Praise the Lord! They are running a second and final test on the "match's" blood to be sure it will be a good donor for Mark. We should have those results by next Tuesday the 31st. Stay tuned for an update, I will be sure to get the news out once I know. We are anxious to find out and get a timeline/plan for the big move. If the match is not a good donor then we will proceed with the umbilical cord blood as the back up plan. If the match looks good for Mark's donor then we will wait for the donor to go through a complete body physical to make sure they are in good health before their stem cells are collected for Mark's transplant.
We have been so encouraged the last few weeks. At first our decision to move and go through this as a family, not wasting any time we have together, was overwhelming and stressful for me. I am a planner and need to have things worked out ahead of time. I had no idea how to accomplish things as simple as groceries and meal planning let alone finding a school for Elijah, pre-school for Noah, a church to attend, back up babysitters for emergencies, medical resources, a bank, drug store and oh yeah, some where to park our car and live! The Lord was 2 steps ahead of me, after a couple quick conversations with friends and family I had support coming from all directions. I was able to get in touch with a great couple who live and work in the specific area we will be living. They have a wealth of knowledge and resources for me. I am thankful for the Lords blessings and am feeling much more confident about our family's move.
Thursday, July 26, 2012
Sunday, July 08, 2012
SEATTLE
The Trip:
The trip to Seattle was great!! We got a lot accomplished and had fun too. We toured a few places to live as well as the Seattle Cancer Care Alliance (SCCA) where Mark will receive out-patient care and University of Washington Medical Center (UWMC) where Mark will receive in-patient care. We also got to stay in a nice hotel and go out to dinner for our 10 year wedding anniversary. We did end up in the ER Friday night (all night) but Mark got all checked out and back to Spokane Saturday afternoon. He is fine. Just another "new normal" situation for us.
The Doctor:
The Transplant Dr. we met with was very informative. He was able to answer all our questions and explain in depth some things about transplant, leukemia and donor matching that I just couldn't figure out from my reading. We have learned that in 19 million people, registered in the US and World lists there is 1 match for Mark. 1 in 19 million.... I always thought he was one of a kind.... now I know it is nearly true. The match lives in Great Britain and is currently being contacted to make sure they are still healthy and willing to donate. If so, they will have their stem cells collected in Europe and flown over to Seattle. The soonest that all this will happen is 6 weeks. If the match is unwilling or unable to donate there are 2 cord bloods (donated umbilical cords containing stem cells) that would work as a "last resort" donor plan for Mark. So a transplant is definitely in our future. We just don't know the source of the stem cells yet.
The Process:
2-3 weeks of out-patient appointments at SCCA followed by 2-3 weeks (maybe more depending on complications) of in-patient care at UWMC for the transplant. Then 3-4 months of out-patient care at SCCA in Seattle. For the actual transplant (in-patient at UWMC) Mark will undergo total body radiation over 3 days to kill off as much of his own bone marrow as possible, then introduce the donor stem cells. Then we pray for the donor stem cells to thrive in Mark's body and start taking over and cleaning up any of the remaining "broken" Mark stem and blood cells (the ones that know how to be leukemia). It is a long process but we are ready for it.
Changes & Help Needed:
We have changed our plan, and now think that we are going to take the boys over to Seattle with us, working out some sort of school option and staying together as a family. This is where I will need help from all those we know who live in the Seattle area. I have lots of questions like where to find things, resources I need to locate.... etc. I am putting together a list of questions and items I need to take care of. More on that later....
We are also finding out just how expensive this will all be and just how much the insurance will actually cover. We are definitely in need of some fundraisers. This week I will be working with the insurance company to get some real numbers and a clear idea of how this will all work out. Then we will be calling on all our friends and family for a little help. More on that later as well......
Pray:
Please pray for this match so far away. Pray that they are healthy and willing. Pray that God will bless them for their generosity. Pray that they will know the love of Christ. Pray that Mark and I can stay strong, that the scheduling will fall into place, that the housing option I really want will open up, that the doctors will clearly see the best options for treating Mark, that we will be placed with a great team of doctors that are going to know the right solutions to the problems Mark will face in treatment, for Marks lung infection to heal quickly and completely. Pray for us as we prepare to move our little family to a strange city with lots of traffic, concrete and noise and ready us for the new adventures waiting there. Pray that we can meet another family or loving trust-worthy individuals to help with child care while we are over in Seattle. Pray for my boys to continue to adapt and have joy and peace each day. Thank the Lord today for his provision, grace and the gift of the Holy Spirit - because without His comfort and direction I would be lost.
Stay tuned for more soon......
The trip to Seattle was great!! We got a lot accomplished and had fun too. We toured a few places to live as well as the Seattle Cancer Care Alliance (SCCA) where Mark will receive out-patient care and University of Washington Medical Center (UWMC) where Mark will receive in-patient care. We also got to stay in a nice hotel and go out to dinner for our 10 year wedding anniversary. We did end up in the ER Friday night (all night) but Mark got all checked out and back to Spokane Saturday afternoon. He is fine. Just another "new normal" situation for us.
The Doctor:
The Transplant Dr. we met with was very informative. He was able to answer all our questions and explain in depth some things about transplant, leukemia and donor matching that I just couldn't figure out from my reading. We have learned that in 19 million people, registered in the US and World lists there is 1 match for Mark. 1 in 19 million.... I always thought he was one of a kind.... now I know it is nearly true. The match lives in Great Britain and is currently being contacted to make sure they are still healthy and willing to donate. If so, they will have their stem cells collected in Europe and flown over to Seattle. The soonest that all this will happen is 6 weeks. If the match is unwilling or unable to donate there are 2 cord bloods (donated umbilical cords containing stem cells) that would work as a "last resort" donor plan for Mark. So a transplant is definitely in our future. We just don't know the source of the stem cells yet.
The Process:
2-3 weeks of out-patient appointments at SCCA followed by 2-3 weeks (maybe more depending on complications) of in-patient care at UWMC for the transplant. Then 3-4 months of out-patient care at SCCA in Seattle. For the actual transplant (in-patient at UWMC) Mark will undergo total body radiation over 3 days to kill off as much of his own bone marrow as possible, then introduce the donor stem cells. Then we pray for the donor stem cells to thrive in Mark's body and start taking over and cleaning up any of the remaining "broken" Mark stem and blood cells (the ones that know how to be leukemia). It is a long process but we are ready for it.
Changes & Help Needed:
We have changed our plan, and now think that we are going to take the boys over to Seattle with us, working out some sort of school option and staying together as a family. This is where I will need help from all those we know who live in the Seattle area. I have lots of questions like where to find things, resources I need to locate.... etc. I am putting together a list of questions and items I need to take care of. More on that later....
We are also finding out just how expensive this will all be and just how much the insurance will actually cover. We are definitely in need of some fundraisers. This week I will be working with the insurance company to get some real numbers and a clear idea of how this will all work out. Then we will be calling on all our friends and family for a little help. More on that later as well......
Pray:
Please pray for this match so far away. Pray that they are healthy and willing. Pray that God will bless them for their generosity. Pray that they will know the love of Christ. Pray that Mark and I can stay strong, that the scheduling will fall into place, that the housing option I really want will open up, that the doctors will clearly see the best options for treating Mark, that we will be placed with a great team of doctors that are going to know the right solutions to the problems Mark will face in treatment, for Marks lung infection to heal quickly and completely. Pray for us as we prepare to move our little family to a strange city with lots of traffic, concrete and noise and ready us for the new adventures waiting there. Pray that we can meet another family or loving trust-worthy individuals to help with child care while we are over in Seattle. Pray for my boys to continue to adapt and have joy and peace each day. Thank the Lord today for his provision, grace and the gift of the Holy Spirit - because without His comfort and direction I would be lost.
Stay tuned for more soon......
Monday, July 02, 2012
HOME
Mark is HOME! Just in time for his birthday tomorrow. Looking forward to a family celebration tomorrow and FIREWORKS on the 4th. The boys are SO excited. I'm actually looking forward to the Seattle trip. I'll be glad to find out more and get a better picture of what we will experiance in the coming months.
Mark feels pretty good. Glad to be home. I came home from work to find him playing legos with the boys today. It makes my heart happy. We'll be back in the hospital Monday, 11th - but 6 whole days of freedom and fun first!!
Mark feels pretty good. Glad to be home. I came home from work to find him playing legos with the boys today. It makes my heart happy. We'll be back in the hospital Monday, 11th - but 6 whole days of freedom and fun first!!
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