Happy "Birth" day 2 years

"Just the Facts"-  2 year benchmark from transplant: Blood status: great!  Immune Status:  still suppressed.  Side Effect status:  GVH still hanging around and undergoing treatment.  Prognosis: Good!!!

I can't believe we are at the 2 year benchmark from Treatment for B.  This is a significant milestone in his journey.  They say that the status you are in at the 2 year marker determine what the prognosis will be going forward.  Meaning that if you are still having significant problems at the 2 year marked, things may not go so well moving into the future, but if you are faring well at this point you will most likely have a better chance for longevity.  Of course we are always hopeful of this. 

Sometimes it seems like it was just yesterday that I was anticipating the arrival of "what" I wasn't sure but I was surprised to find that it was just 2 of the tiniest bags of blood I have ever seen, but there they were in a small blue playschool cooler, that live saving blood for my dear husband, hanging on by tubes of blood being infused into him.  These 2 bags were generously donated by some gracious women who cared about humanity with an extra measure and we were blessed by it.  I can replay that day so vividly in my mind, and then it is hard to believe that today, it was 2 years ago.  I think back with amazement and great joy and peace in my heart for all we have been through and the hope I have to go forward.

These 2 years have not been without obstacles and set back, but I have found that if you look forward with hope you will find it, even is small insignificant ways.  We still wake up not knowing what the day will bring, as just a few weeks back, B was hospitalized with a virus.  It was something that you or I could have fought, but not him due to his being immuno-suppressed still.  We still have our guards up on this front and try to be careful that he doesn't get exposed to some wild thing.  But too, we try to live as normal as we can to help impress that he is getting better, even if it is in small measures.

I don't believe it was a mistake that my devotional today opened to the subject of Joy.  Joy in knowing that you are loved by your Creator.  You could have everything taken from you and what should still remain is joy in knowing that He loves you.  His presence is always there, even when all else has failed.  This joy one should be easy to hang on to, but in fact, it slips away from us due to the circumstances that surround our lives that cause joy to fade and even block it from our being.  But today I know I have His joy and was reflecting on how much we have be imprinted with His joy.  There is no magic here, it comes from knowing Him and His love for us, and the prayers of so many people on our behalf.  We will continue to move forward in our journey of recovery and keep His joy with us, as we reflect on how much He loves us.  Thank you all for walking on this journey with us and keeping us on your prayer list.  It has meant so much to us.
Until next time,
Hopeful Believer

September 26, 2012- Whew, barely made it through Summer!

Just the Facts-- Almost to the 1 year marker for GVH of the skin. Recurrence of GVH of the Gut and Mouth through the summer.  Blood levels are up, up, and away!!!

So, it has been some time since I last wrote about B and our adventure.  February to be specific.  Since that time we have had a daughter get married, then get pregnant, and a niece get married.  Life has such a way of continuing even if it has slowed down for some of us.  This is my second summer of not getting in the ocean.  Hard to believe it now that I am reflecting on it.  It's not so much that I cannot, but I would feel really guilty because that is all B is dying to do and he still cannot.

Earlier in the year B starting to work a little, only about 1 or 2 small jobs a week.  I have to say that this was nice to get a little extra income, since we have been living on a squeezed budget for the last 2 years.  Just as B was getting a rhythm, the Docs decided to try to lower some of his meds.  For a few weeks this seemed to be successful.  He was experience severe joint pain to the point of possible considering a wheel chair.  This pain was a direct result of some of the chemo meds. They changed that out and he started to feel relief almost immediately.  Then after a few weeks of lowered immuno-suppressants, we begin to see the skin rash kickup, and it begins to go through its courses of redness and internal fire, then peeling and tenderness.  Then we notice his stomach having some fits and before we realize his mouth is full of GVH.  In case you have forgotten, (wish I could) GVH is Graph versus Host and is common in transplant patients.  The graphed cells are fighting with the hosts cells and are embattled in a type of war.  For cancer patients this is good as it tend to fight away the tumors.  But for B, he doesn't have cancer or tumors, so the Docs are baffled by the length in which he has suffered with this.  So after the rise of various GVH symptoms, up go the meds, which is exactly what we are trying to avoid.  It even got so bad that they had to put B back on "steroids".
This was scary for me.  Fortunately we have not has a recurrence of any prior steroid activity. Thank Goodness!!

So we are now on the eve of another phase of recovery and a new treatment.  When you think of it all this stuff is a bit sci-fi.  For the next 6 months he will be having his blood treated with UV rays.   It is quite a process and commitment of time and hiding from the sunshine but we are told they have had great success.  So it is with this in mind that B will subject himself to hours hooked up on both arms to a apheresis machine while it draws blood out and separates it, treats one part of it, then UV infuses it and finally mixes it all back together and puts it all back into him.  He will be highly sun sensitive and cannot drive while being treated on those days.  He has to give up some freedom now, to gain some freedom in the future. 

Some people say we have been through a lot.  And in reflection I would certainly agree.  However, I never really stray far from the thought that B is here.  He walked his daughter down the isle and will soon see his first grandchild, he attended his nieces wedding and is seeing our youngest go to college.  He would not have experienced these events if we had chosen a different direction.  So for that I am grateful. If you think of B and his new bionic blood, would you take a moment to keep him in prayer? This is what got us through that first very difficult year and we would so appreciate that kindness from you all.

Until next time,
Hopeful Believer.

PS, photos are before, during and after treatment!

February 12, Day 1.16, Getting on with it!

"Just the Facts"-- Blood levels continue to hold.  GVH rash is hanging on and being stubborn, using high levels of chemo meds to abate the rash.  Tired, still immno -suppressed, and still have a pic line.

Wow, January has always been a blur of a month for us.  We celebrate several birthdays, an anniversary and being in accounting lots of year end reporting to complete.  Not to mention planning for an upcoming wedding in the near future.  Even though the month has blown by, we did not miss the significance of January.  We quietly celebrated 1 year since B's Bone Marrow Transplant.  I reflected on all that went on during this past year, while B was wishing he was further along and is pressing to move forward.

I have reflected back over the year because I am thankful for the fact that B was here to celebrate both his new and real birthday, our anniversay, other family birthdays.  I am also thankful for the fact that we have all survived by the love, grace and support of so many.  It's been a wild ride and I don't want to forget, that strength was provided when needed, food was provided and continues to show up, financial support has been provided in many ways. Care and concern has shone up over the year in so many ways and in a constant form. The abundant prayer that has been presented to our King is beyond counting and it continues today.  I choose to not forget where we have come from and how far we have come. I want to stay in that state of thankfulness and reliance on what the Lord will do in our lives.

B, on the other had, has trouble with recall of the past and doesn't want to entertain thoughts of what he has been through.  He want to focus on going forward and to recapture his health, re-establish his work capabilities and enjoy this new lease on his life.  I can understand this about him, as he has been through a tremendous amount of issues.  Even though he is struggling with his third round of GVH rash, and suffers from the burning of his skin from the inside out, he is focused on getting back to work.  He has been writing (stenography) for the last 3 months for periods of time each day.  This builds speed and endurance all of which is required for tasks on the job.  The past week was one to mark on the calendar as first, he visited his office and said hi to all the folks there for the first time in a year.  Then he sat in on a depo as a backup and ended up staying the entire day.  Tired but confident he made it home and rested through the weekend.  It is very possible that this new week he could take a job for the first time in over a year!!!!   All this while he is on the highest level yet of chemo for the rash.  He can't take steriods any more. (thank goodness).  So we will continue this course of medicine and see what the doctors determine as they watch him carefully.  What he had was so rare that they really don't know exactly what to expect and are cataloging what the recovery process is so that they can record this in a medical journal.  All we know is his blood is holding and we are so very happy about that.  Each new day brings hope and excitment for what the next step will be.  If you are lead to pray for us, please pray that the rash would begin to retire and we could come off the meds slowly this time.  We thank each of you for your care and concern for the adventure we have been on. It has been a wild one and we are very thankful we didn't have to go it alone. Bless you.
Until next time,
Hopeful Believer.

Dec 28, 2011, Day +333 Endings and Hopeful Beginnings

"Just the Facts"-- Continuing to improve in blood level measurements, GVH rash is back and very stubborn.  Had to increase chemo meds to full strength.  Struggling with this.

I couldn't let the year end without an update and a show of gratitude to all the faithful friends for following along with us on this journey.  I hope the Christmas season was kind to you and that you were blessed with the gathering of family and friends.  Times are hard right now, so we need to be grateful for the things we have that are precious;  health, family and great friends!  Our Christmas wish to each of you is that you and your family will be blessed with love, health and happiness.  We pray that each of you will abundantly receive more than you can every imagine from our King.

B continues to improve, however the GVH rash of the skin is back.  It is not super aggressive, yet we continue to work with the medicine to get it to rescind.  It is proving to be very stubborn.  This is waring on B's mind.  He was thinking December he would be OFF most the meds and this latest bout will delay that about 3 months.  He is keeping the discouragement at bay, but it is a daily fight.  The meds also sap his strength and energy and keep him very tired all day.  We are hoping for a light at the end of this tunnel in the New Year!

As I reflect back to some of the events we have endured during this past year, I can sum it up with the thought that we were carried through this venture, by the faithful prayers and support of our family and friends.  Being on the receiving end, it has been quite amazing to experience.  It is quite a gift you give to another when you stop your busy life and bow your head in prayer for them.  I hope it is a practice you will consider taking into the New Year.  Bless you and thank you.
Until next time,
Hopeful Believer.

December 1,2011 Day +306,Bash Bash that Rash

"Just the Facts"--  Blood levels continue to climb bit by bit!  The pesky rash is back. Meds have been increased to fight it.  Physical improvement stalled.

Well, sorry it has been a while since I last posted.  November seemed to be especially busy.  How did I do it before?  Funny how we get accustom to our usual circumstances quickly.  I had to go pick up some meds from the pharmacy after work one night this week, and I was reflecting that hey, I did this every night for a month last year, but instead of a quick 10 minute trip to the med counter, I was in the hospital until 9 or 10 pm and then went home for the day.  I pondered how I could have done all that for so long and still function....then I realized, it was all the amazing prayer that was going up, on our behalf during that time.  I have to say I was very tired after my quick trip to the pharmacy.  So, if you are wondering.....Prayer works!  And it works in more ways than you will ever know or realize.  So once again, if you are one of those amazing people who have supported our family with prayer even once, I thank you from the bottom of my heart. 

We have come a very long way.....we are at day +306, sometimes it seems like just yesterday and other times, it was another era ago.  Time is so funny that way.  I think time may be one of our biggest challenges in life.  We can't slow it down or hurry it up.  We try to conquer it, but time won't let us do that.  The lesson in time is patience.  Hard to learn and fabulous if you gain it.  I hope you all get time enough to gain patience!

A word from B:

Dear Readers, Thanks again for all your prayers and support. My labs have been getting better and better. I am now at a personal record blood level of 12.6. Amazing! 

While my labs are improving, I've been tapering off from immuno-suppressant medication, making me feel much more normal. In the process of tapering off these meds, two weeks ago my body started fighting the donor again, and symptoms in the form of the serious GVH rash returned.   I was immediately prescribed more immuno-suppressants, back as high as I originally was taking.   I was scheduled to be off all suppressants by Christmas. This is now looking like a two to three month delay. The Doctors say this is fairly normal, but I am finding it very disappointing. I was counting the days, and now two to three months seems like a lifetime. I need to get back to work, but can't now.    Please pray that my rash goes away for good, and please pray for me to be patient. It's getting more and more difficult each day to be patient.
 Thanks again,
Until next time,
Hopeful Believer  and B

Oct. 25, Day +269 Beachin it!

"Just the Facts"--  Weekly infusion appointments for testing, Blood levels continue to climb.  Haven't needed any additional support meds, except for protein.  Sleeping a lot.

We continue to be thrilled for each weeks infusion appointment and see the new "higher" blood level measurement.  It never gets old to get this good news!  That is the thing about good news, you never tire of it, it is always welcome and it gives you a boost.   So, why not go and seek out some good news!  We checked with the doctor to see if we could begin one of our favorite things to do; beach walking.  B got the go ahead, as long as he protected his skin from the sand.  So adorned with socks and shoes and a teenager, we took to the beach, walking on the sand.  Yay!  We have seen some mighty nice sunsets too! 

From B:

Thank you all for your prayers. Just got back from my weekly infusion, and my blood level climbed to 11.3. This is very exciting. Don't stop praying. The higher the better.

I've been taken off of more immuno-suppressants and hope to come off more at this Wednesday's doctor appointment. I'm dying to get the catheter removed from my arm to feel normal again.

Without working or being able to do my normal outdoor activities -- surfing, swimming or biking -- I'm very challenged with long days. It's very difficult not to be bored. Never thought I would experience this problem, but it's becoming a big challenge for me. It's given me super insight to what many people must be going through, be it an injury, illness, or old age. I see people who I think may be lonely and bored, and I start praying for them, wondering if they're emotionally going through what I am going through. It seems people who love reading all day never have this problem. I can only read for an hour or two at the most, do a couple of chores, play guitar for half an hour, nap a bit, and then I'm challenged on filling the day.   Thanks again for your prayers and support.

We all are really blessed by all your continued support and interest.  This has been quite a journey and so far has been on a good track.  But we don't take this for granted at all.  B just recently sat next to a women that was very distressed as her BMT treatment did not take.  This is something no one wants to hear as they sit at infusion and wait for their own results.  The prayer support has carried us through some very intense difficult times and yet we seem to have floated over the challenges. :)
Bless each and every one of you.
Until next time,

Hopeful Believer.

Oct 9, 2011 Day +253, Waking UP

"Just the Fact"--  7 plus weeks without a blood transfusion, feeling good, still on immuno-suppression meds, so senses are still dulled and contact is limited.

Every day we move closer to what we once considered our normal life.  B is able to do things for himself, and is well enough to want to do more, yet cannot due to the meds he is still on.  This is a small problem that we look to the future to be corrected and wait patiently.  Although we are waiting, B continues to try to do more and then realizes that he is not 100% yet.  It's a lot like when you have a cold and have been down and then think your better, so you get up and try to get going, but soon realize that hey, you're not that well yet.  With all this progress moving forward, we have not forgotten how far  we have come.  Every week we go without having to get a transfusion is reminder that  we have been through something tremendous and survived it, and can proclaim healing for the future! 

We recently attended a BMT Survivor party, where many that have been through the BMT process were there to share and smile.  They all have different issues that brought them to this type of treatment and their testimony of health and gratefulness is was endearing to hear.

B, wanted to share a few words with you all below, but as for me, I continually want to thank each of you for sharing this journey with us, and keeping us in your thoughts and prayers.  We are blessed because of each of you!!

From B:    Well, I'm not going to be shy about specifically asking for a prayer request. Last week in my last blog I asked you all to pray that I produce more blood, to go above what was just okay or a healthy level. Today at infusion, which is now only once a week, I had a reading of 10.5 units of blood. Wow. That's the most I've had since I was diagnosed with this condition back in February 2010. Thanks for your prayers. I'm going to ask again, let's push for 11 or more.

Also, my other important blood work went way up: my white blood cell count and my platelets. It was a good day. I'm hoping to soon get to twice-a-month visits. That's when you're really cooking.

I'm getting to a point where I don't need to wear a mask and possibly may soon be sitting in the back of the church instead of outside. It really means a lot to have some of you visit me after church in the back. Just no hugging or handshaking or colds, and we're fine. I've really missed the fellowship.
Thank you for all your prayers and support.

Until next time,
Hopeful Believer and B.