My trip home was very busy!! Lots of snydergraphics work and packing. It was wonderful to visit with friends and family and sleep in my own bed again! It was a quick three days home but I really enjoyed it.
I met a new friend on Monday night. Through a friend of a friend I got in touch with another young mom who's husband is also fighting Leukemia. Our stories are so similar that when I read her blog I feel like I know exactly where she is at and how it feels. I wanted to answer her questions and meet such a strong brave lady who knows just where I am at. I went for what I figured would be an hour visit - almost 5 hours later after Starbucks kicked us out to close, we finished our chat in her car. They are just getting started with the bone marrow transplant part of his treatment and they should be finding out about a match real soon. Please when they come to mind - remember Lee and Bekah in your prayers.
I am so happy to be together as a family again. OH HOW I'VE MISSED MY BOYS! They have changed so much in the 2 months we've been apart. It is a lot of work - but so worth it to have them right here with us. Elijah started school today and seemed to really enjoy it.
Mark is feeling good. Daily fluids and pills.... OH THE PILLS! Three times a week with the PUVA treatment and two times a week to take blood and see the doctors. Rash is a little worse. We will talk with the doctors tomorrow about possible additional treatments - no one on our team seems to be too concerned. Makes me think this will be a - mostly worry free, long, slow road back to being rash free. We'll keep you posted.
Pray for patience and healing. Pray for fun family times. Pray for good rest.
Thank God today for your health, family and friends.
Thursday, October 25, 2012
Saturday, October 20, 2012
Day 28 & Going Strong
Today is a day of getting things done. Errands, cleaning, organizing and preparing to be gone (back home to Spokane for a few days). Jim and Debbie arrive tonight - I'll show them all the ins and outs of Marks care and then I head back to Spokane tomorrow. I have several days of snydergraphics work and packing.... then Wednesday after school the boys and I head back to Seattle for the duration of our little adventure! I am so excited. I know it will be a lot of work to balance it all (Mark, boys, medical stuff, cleaning, cooking, work, school, appointments....etc.) but it will be worth the work to all be together again!!!
Mark is doing well. Today is 28 days post transplant. Late this week he started developing a slowly growing rash. Not itchy or otherwise bothersome - but still a rash. One skin biopsy later we find out that it is Skin GVHD (see below for more info). No need to be alarmed - normal for transplant patients, especially with cells from a mis-matched, unrelated donor - like Mark's. While we would hope for NO issues - this one is fine. If he has to have some type of GVHD then in his skin is the best option and a slow developing surface rash with no apparent side effects isn't too big of a deal. They could increase Mark's steroid intake (not desirable) to reduce the rash but the better option is to do PUVA. (see below for more details) It is a UVA light treatment that effects the cells in his skin - making them calm down and suppress them. (He takes oral pills and then lays in a machine much like a tanning bed). It should control the symptoms of skin GVHD and we can continue to taper Mark off the steroids. If things change. I'll let you know.
Keep praying for....
Marks skin to respond to treatment
The boys move to Seattle
My days of work ahead
Patience
Endurance
The next 62 days at least....
________________________________________
Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.
GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.
_______________________________
PUVA refers to the interaction of long wavelength ultraviolet light (320-400 nm) with a pharmaceutical molecule of plant origin, psoralen, producing a type of "photochemotherapy." Psoralens (Mark takes a drug with them - orally) are a family of plant chemicals that are able to absorb light in the ultraviolet A (UVA) spectrum (320-400 nm). Once this absorption has occurred, these chemicals become activated and can react with biological molecules in a number of ways. Although human tissues are relatively resistant to the effects of ultraviolet A light alone, this changes dramatically when psoralens are present in the skin tissue. The most obvious change is a marked increase in ultraviolet sensitivity manifested as burning of the skin (the equivalent of sunburn). It is hypothesized PUVA works by inhibiting the production of the basic genetic material, DNA, and/or by damaging receptors of skin cells (epidermal cells) and particular immune cells (T-lymphocytes).
Mark is doing well. Today is 28 days post transplant. Late this week he started developing a slowly growing rash. Not itchy or otherwise bothersome - but still a rash. One skin biopsy later we find out that it is Skin GVHD (see below for more info). No need to be alarmed - normal for transplant patients, especially with cells from a mis-matched, unrelated donor - like Mark's. While we would hope for NO issues - this one is fine. If he has to have some type of GVHD then in his skin is the best option and a slow developing surface rash with no apparent side effects isn't too big of a deal. They could increase Mark's steroid intake (not desirable) to reduce the rash but the better option is to do PUVA. (see below for more details) It is a UVA light treatment that effects the cells in his skin - making them calm down and suppress them. (He takes oral pills and then lays in a machine much like a tanning bed). It should control the symptoms of skin GVHD and we can continue to taper Mark off the steroids. If things change. I'll let you know.
Keep praying for....
Marks skin to respond to treatment
The boys move to Seattle
My days of work ahead
Patience
Endurance
The next 62 days at least....
________________________________________
Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.
GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.
_______________________________
PUVA refers to the interaction of long wavelength ultraviolet light (320-400 nm) with a pharmaceutical molecule of plant origin, psoralen, producing a type of "photochemotherapy." Psoralens (Mark takes a drug with them - orally) are a family of plant chemicals that are able to absorb light in the ultraviolet A (UVA) spectrum (320-400 nm). Once this absorption has occurred, these chemicals become activated and can react with biological molecules in a number of ways. Although human tissues are relatively resistant to the effects of ultraviolet A light alone, this changes dramatically when psoralens are present in the skin tissue. The most obvious change is a marked increase in ultraviolet sensitivity manifested as burning of the skin (the equivalent of sunburn). It is hypothesized PUVA works by inhibiting the production of the basic genetic material, DNA, and/or by damaging receptors of skin cells (epidermal cells) and particular immune cells (T-lymphocytes).
Thursday, October 18, 2012
Child of God
With every breath, with every thought
From what is seen to the deepest part
I offer all that I've come to be
To know your love fathering me
Father, You're all I need
My soul's sufficiency
My strength when I am weak
That love that carries me
Your arms enfold me, till I am only
A child of God
With every step on this journey's walk
And wisdom's songs that the soul has sought
I give myself unreservedly
To know Your love fathering me
- Child of God, Vineyard
From what is seen to the deepest part
I offer all that I've come to be
To know your love fathering me
Father, You're all I need
My soul's sufficiency
My strength when I am weak
That love that carries me
Your arms enfold me, till I am only
A child of God
With every step on this journey's walk
And wisdom's songs that the soul has sought
I give myself unreservedly
To know Your love fathering me
- Child of God, Vineyard
Monday, October 15, 2012
Over-Due Update
Sorry it has been so long since I've updated. I have been busy with snydergraphics work and figuring out the new schedule now that Mark is out. We have really enjoyed this last week of NOT being in the hospital. Mark is doing good. He feels good. Nothing big is bothering him. We are working on gaining back strength and endurance as well as gaining back weight. Doctors say he is doing great. They are slowly tapering him off of the large dose steroids. He was originally started on them to treat all symptoms of GVHD Mark had in hospital - which are all gone now. They will continue to taper them through the 3rd week in November. As they decrease the dose the GVHD could show up again. That is our real prayer right now - that NOTHING shows up again. We are hopeful. Mark's body is doing really good and we have no reason to think that will change.
We got to see the boys this weekend. It was GREAT!! Boy, did I miss them. Jim and Debbie brought them over and we all spent the weekend hanging out and having fun. We did a little shopping on Saturday and to the Aquarium again (this time with daddy) on Sunday. Noah was very persistent in asking "Paka Jim" for a ride on the giant Ferris wheel....... Paka finally gave in. Mark, both boys and Jim went for a ride while Debbie and I hit the sourdough bakery. All had fun!
On Sunday afternoon we sent the boys home again... but not for LONG! I am headed to Spokane this Sunday for some work on Monday and Tuesday and bringing the boys back to Seattle with me for GOOD on Wednesday! Jim and Debbie are going to take care of Mark in Seattle while I'm gone. I can't wait!
We will get Elijah all set up with school over here and get busy making some memories as a family.... finally back together everyday. Halloween trick-or-treating, pumpkin carving and some visits from friends are all in the works.
Keep praying for Mark's health. We are doing good but still have at least 67 more days here.
Oh, and enjoy some pictures:
We got to see the boys this weekend. It was GREAT!! Boy, did I miss them. Jim and Debbie brought them over and we all spent the weekend hanging out and having fun. We did a little shopping on Saturday and to the Aquarium again (this time with daddy) on Sunday. Noah was very persistent in asking "Paka Jim" for a ride on the giant Ferris wheel....... Paka finally gave in. Mark, both boys and Jim went for a ride while Debbie and I hit the sourdough bakery. All had fun!
On Sunday afternoon we sent the boys home again... but not for LONG! I am headed to Spokane this Sunday for some work on Monday and Tuesday and bringing the boys back to Seattle with me for GOOD on Wednesday! Jim and Debbie are going to take care of Mark in Seattle while I'm gone. I can't wait!
We will get Elijah all set up with school over here and get busy making some memories as a family.... finally back together everyday. Halloween trick-or-treating, pumpkin carving and some visits from friends are all in the works.
Keep praying for Mark's health. We are doing good but still have at least 67 more days here.
Oh, and enjoy some pictures:
 | |
| We went for a walk at the sculpture park and along the water. |
 | |||||||
| My wonderful husband. |
Sunday, October 07, 2012
& We're Out!
Tomorrow will be the LAST day in the hospital for Mark!! Discharge orders have been filed. We will get all kinds of instruction on monitoring blood sugar, IV's and Medications tomorrow. I will get up early and CLEAN the apartment really well - then go get Mark and BRING HIM HOME!!
We are so excited - yet a little intimidated. But mostly just happy to be together and at "home." We are on day 15 of our 100-ish day seattle-bound post-transplant journey. Mark still isn't feeling great, but his counts are up to almost the "low" range of normal.
Keep praying.
Rejoice with us today. Thank you Jesus for your blessings!
We are so excited - yet a little intimidated. But mostly just happy to be together and at "home." We are on day 15 of our 100-ish day seattle-bound post-transplant journey. Mark still isn't feeling great, but his counts are up to almost the "low" range of normal.
Keep praying.
Rejoice with us today. Thank you Jesus for your blessings!
Thursday, October 04, 2012
ENGRAFTMENT!!
This morning the doctors made it official... Engraftment has started!!! Mark's body is one huge step closer to being healthy! We are thankful and relived. (see below for definition)
The doctors have decided that all of Mark's skin and rash issues late last week are related to a drug reaction and Hyper Acute Graft-Versus-Host Disease. (more info in definition below) No need to worry. It all falls within the "regular" things that can happen to a transplant patient. They put him on steroids and anti-biotics and he is feeling much better. In the next few days as they slowly back off on the steroids and anti-biotics - if he doesn't get any fevers or skin issues back - we will be another step closer to being out of the hospital.
We are both doing good. We are mentally tired. Tired of our family being apart and plain tired of being in the hospital/not feeling well. Pray for peace of mind, strength to endure and joy each day. Praise God for what He has already done to get us this far!
Definitions:
Engraftment
This is the process of transplanted stem cells starting to grow and develop. It means your bone marrow function and immune system—which were weakened or destroyed by conditioning—are beginning to recover. Signs of engraftment usually appear about 10 to 28 days after the transplant. The first sign is a rising white blood count.
Graft-versus-host disease (GVHD)
GVHD is a common side effect in people who receive cells from a unrelated donor (allogeneic transplant). It occurs when the transplanted cells recognize the recipient’s tissues as foreign and attack the tissues. This can cause a variety of problems, including skin rashes, liver problems and diarrhea. There are two types of GVHD: acute GVHD, which often happens in the first three months after a transplant, and chronic GVHD, which can develop any time between three months and three years after the transplant. Both acute and chronic GVHD can be mild to serious. Medications and other treatments that suppress the immune system are used to treat GVHD symptoms until the donor cells stop attacking the body.
(In Mark's case the "Hyper" before Acute GVHD - means that it happened before engraftment.)
The doctors have decided that all of Mark's skin and rash issues late last week are related to a drug reaction and Hyper Acute Graft-Versus-Host Disease. (more info in definition below) No need to worry. It all falls within the "regular" things that can happen to a transplant patient. They put him on steroids and anti-biotics and he is feeling much better. In the next few days as they slowly back off on the steroids and anti-biotics - if he doesn't get any fevers or skin issues back - we will be another step closer to being out of the hospital.
We are both doing good. We are mentally tired. Tired of our family being apart and plain tired of being in the hospital/not feeling well. Pray for peace of mind, strength to endure and joy each day. Praise God for what He has already done to get us this far!
Definitions:
Engraftment
This is the process of transplanted stem cells starting to grow and develop. It means your bone marrow function and immune system—which were weakened or destroyed by conditioning—are beginning to recover. Signs of engraftment usually appear about 10 to 28 days after the transplant. The first sign is a rising white blood count.
Graft-versus-host disease (GVHD)
GVHD is a common side effect in people who receive cells from a unrelated donor (allogeneic transplant). It occurs when the transplanted cells recognize the recipient’s tissues as foreign and attack the tissues. This can cause a variety of problems, including skin rashes, liver problems and diarrhea. There are two types of GVHD: acute GVHD, which often happens in the first three months after a transplant, and chronic GVHD, which can develop any time between three months and three years after the transplant. Both acute and chronic GVHD can be mild to serious. Medications and other treatments that suppress the immune system are used to treat GVHD symptoms until the donor cells stop attacking the body.
(In Mark's case the "Hyper" before Acute GVHD - means that it happened before engraftment.)
Wednesday, October 03, 2012
Keep on keep'in on
Day 11 post transplant and we are doing well. Mark's body is showing the first signs of "grafting." We need his numbers to continue to go up the next couple days and it will be official. Grafting is the stage of the transplant where the donor cells start taking over and creating new cells.... a new immune system - and is a very good sign that Mark will be getting stronger soon.
Mark's skin is getting better. It was a couple tough days there. He is on steroids to help the skin which challenge his mind. He is doing his best to stay motivated and positive. Please pray for Gods supernatural strength to help Mark power through the tough days ahead.
I had to go and re-read my post today about: doing what we don't want to do - I needed that reminder. I need to trust God and keep moving forward with joy. I can do this. We can do this. We are strong enough. May God be glorified each day.
Thanks for your love, encouragement and support.
Mark's skin is getting better. It was a couple tough days there. He is on steroids to help the skin which challenge his mind. He is doing his best to stay motivated and positive. Please pray for Gods supernatural strength to help Mark power through the tough days ahead.
I had to go and re-read my post today about: doing what we don't want to do - I needed that reminder. I need to trust God and keep moving forward with joy. I can do this. We can do this. We are strong enough. May God be glorified each day.
Thanks for your love, encouragement and support.
Tuesday, October 02, 2012
I Need Thee
I need thee every hour, most gracious Lord
No tender voice like thine can peace afford
I need thee every hour, stay thou nearby
Temptations lose their power when thou art nigh
I need thee every hour, in joy or pain
Come quickly and abide, or life is vain
I need thee every hour, teach me thy will
And thy rich promises in me fulfill
I need thee, O I need thee
Every hour I need thee
O bless me now, my Savior
I come to thee
No tender voice like thine can peace afford
I need thee every hour, stay thou nearby
Temptations lose their power when thou art nigh
I need thee every hour, in joy or pain
Come quickly and abide, or life is vain
I need thee every hour, teach me thy will
And thy rich promises in me fulfill
I need thee, O I need thee
Every hour I need thee
O bless me now, my Savior
I come to thee
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