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.

September 27, Day +241 New Life

"Just the Facts"--  6 weeks without needed a blood infusion.  Blood levels slightly climbing.  Off steroids!  Driving well and only once a week clinic visits.

 

Once again, B has typed out a few thoughts for you.  So good to hear from him and his perspective about this journey. 

 

The last blog I wrote, I explained how Karen and I stuck our heads in at Horizon to check things out but couldn't go inside because I can't be with large crowds. Well, the next Sunday, the first time Pastor Mike spoke for the new Sunday night service, Karen and I attempted to go to church and see if we could sit somehow out in the fresh air, right outside the door, so we could still watch and hear. The first person we spoke with about it said he would have to check with Mike, that Mike wanted things set up a certain way. Mike did certainly allow the doors opened for us, and we were immediately given comfortable chairs to sit in. It was really neat to sit down just like we were part of the church again and sing and listen to Mike's message. Right at the end, Mike told everyone my story about being sick and had everyone hold hands and pray. It was a very special time. It has been almost a year since I've gone to a service, and it felt great to be back. We went back again this week and had the same hospitality. Thanks Horizon.

This Thursday marks six weeks of not needing a blood transfusion or any other infusion products, such as platelets, magnesium, potassium, etc. My blood has been slowly producing on its own and has climbed to 10.1 as of last Monday. This is very exciting. One of the doctors said 10 may be as high as I ever get, which is very healthy, but 13 plus is what is normal. Please pray my blood would climb over 10 for optimum health. I asked the director of the bone marrow clinic if 10 was indeed as high as I would probably go, and he said I could definitely go higher, which was very encouraging.

Because I haven't been needing any transfusions for several weeks, they dropped my hospital visits to once a week instead of twice a week. The next step will be once every other week, which is really easy, and then they'll remove my arm catheter.

 

Karen again......As you can see every day we see a new life spring forth in B.  Things he used to do and has been reclaiming to do once again.  He had been working on endurance, as other than real aggressive activity, endurance seems to be the last frontier.  Being able to swim and then surf will be the ultimate victory!  We are so hoping to see this activity by the end of this year, even if the water is chilly!    Thank you all so much for your gracious love and support and prayer.  We just cannot thank you enough.

until next time,

Hopeful Believer.

September 14, Day +228, Another voice heard from...

"Just the Facts"-- Driving, writing, and overall ready to get going with normal life.  Blood levels continue to hold or increase bit by bit.  All other markers look good!

I recently asked B if he would be interested in writing something on the blog.  He said he would and so today he has.  I will just note a few facts before his note.....1)  he is now driving on his own! 2)  we are going for the second 4 week cycle without blood! 3) this upcoming Monday will mark the first day off steroids! 4)  Docs hope to have B off all meds in about 2 months!  We are cautiously celebrating! :)

Just from the heart.

Karen asked if I would write the next blog since I have so much time on my hands.

Thank you all for your prayers and support.  It's hard to know how to react when someone you know is going through a difficult time like this, but just knowing you're there and can be called upon is the best support there is.  Thank you.

 

Karen has been an amazing wife.  I have completely relied upon her.  There's so much to do, I feel sorry how after she works a full day she just keeps on going when she gets home.  Keeping track of just my medicine is nearly a full-time job.

 

I just came back from infusion therapy and a doctor's appointment yesterday.  All is very positive.  I didn't need any infusions, and this makes the third or fourth time in a row  that I didn't need anything.  I've gone four weeks, this Thursday with no blood transfusions.  My bone marrow is producing blood on its own, and the doctor says I probably won't need more blood.  That was the whole goal of this amazing procedure. 

 

I'm still on a lot of medications that slow me down and make me have to stay out of the sun, which is the most difficult, because I love to go on walks, and I get too warm wearing pants and long sleeves and a hat.  I asked the doctor when I could start wearing shorts, and he said to give it a month.  Then I asked him how soon until I could go in the water, ocean or pool, and he was trying to work it out so I could go now, but should give it more time.  I need to have the catheter removed from my arm first.  So I'll try to be patient.  The doctor told me I will feel so much better when I get off these medications, which tire you out.

 

The biggest trial I'm going through now is that I feel sharp and strong, and not being able to work or do my favorite activities makes me very restless and feeling anxious.  I wanted to go to Sunday night's first evening service so bad the other night but couldn't because of the large crowds.  Karen and I walked to church and peeked our heads through the side door just to feel like I was there.  The isolation is causing some loneliness issues, which should end soon.  I can be with a small group if I know no one has a cold or has been around someone ill. 

 

Please pray for strength for Karen and that I stay busy during my long days.

 

Thank you all again,

B

Until next time,

Hopeful Believer.

Aug. 29, day +212, Ready, Set, Drive!

"Just the Facts"-- Blood is up, Platelets are up, chem levels doing good, reducing steroids, and Released to Drive!!!

We have been to either the doctors or infusion combined in the past year over 150 times, and today was the second best news ever.  After 8 months, B was released to drive.   This is a major change for us and especially to B.   Having to depend on 3 very busy females was beginning to ware thin for him. To always have someone on call to take B to and from the hospital 2, 3 or every day during the week has been quite a project.  Today's events was most certainly an answer to prayer.  We test drove last week, but will do a little more, then this week, B will drive himself to infusion for this first time since the transplant.  The other good news came on his lab report.  His blood went up a whole point, without getting blood.  The last time I mentioned getting blood, we were trying to go for 3 full weeks, well, we made it 1 day shy of 4 weeks!  That a was a huge milestone in this journey.  Now we are enjoying seeing the numbers just not stay level, but actually go up.  B's platelets went from 51 to 75!   75 being the highest reading yet since the transplant.  We still have a ways to go to be in the normal range, but all this is really, really great news, and we are really pleased. 

We are having to catch ourselves, as the natural desire is to move forward at full blast getting things back to normal.  But it could take one simple mistake to take us back, so we are trying to remind ourselves to go slow, take it easy, keep a steady pace so that we don't digress.  We have so much to be thankful for and we need to not take any good steps for granted.  Nor all the support and kindness we have received, which has humbled us and overwhelmed us all at the same time.  We are contemplating saying goodbye to the lounge, and getting B, his office back.  This move will also be very significant and speaks to just one more phase of life trying to get back to normal.  For B, normal will be, being able to surf, swim, eat, work and play and share time with family and friends, without concern for energy, bacteria, shortness of breath or having to get blood infused.  Right now this seems like a lot to ask for, but we feel certain, these things are in our near future.  Answered prayer, we love it!  Thanks and Bless you.
Until next time,
Hopeful Believer.

August 16, day +199 Wow, this is great!

"Just the Facts"--Past the 3 week benchmark for needing blood. Feeling a little better each day. Waiting for strenth to show up. Need periodic protien infused to help beat off any lurking infections.

I never believed that the 3week marker for needing blood would come and go and that the level would actually increase during the lab reports!!! We are now at 3.5 weeks without needing blood and counting. This is just fabulous news and although expected at some point, caught us by surprise. So now we are really watching to see just how long we go before needing blood. This is going to be an exciting week. Meanwhile we will try to keep all the other levels up by watching our food and liquid intake and working on our exercise with walking. At the beginning of this journey I mentioned just how healthy B was. This continues to be evident still in spite of all the side effect issues he has endured. He get his blood drawn twice a week now, down from 3 times and those lab reports are awesome. Great readings for cholesterol,glucose,blood pressure, liver and kidneys. We have a lot to be thankful for!

Our next big hurdle will be getting back on the road. We never expected our oldest daughter to turn her life inside out during this time but that has sort of happened. She basically had to give up her job to help care for her dad, all this happily and without complaints. But 8months later she needs to get back to work and that will be happening next week. We are very excited for her and yet we will still have some schedule hurdles to overcome. B is hoping to be released to drive, I'm not so sure he is ready,but he will have to get going sometime. I am not worried as we have been so well cared for up to this point. We have learned to take one day at a time, yet with a hope for tomorrow. We have come a long way and still have a ways to go, but we have seen so much love and grace along the way. It has been amazing and such an encouragement to B. I never tire of saying thank you for all your prayers!
Until next time,
Hopeful Believer.

August 7, day +190, Two weeks and counting

"Just the Facts"--  Friday marked the second 2 week cylce for needing blood and we past it.  Blood holding at 9, yahoo!  Platelets rising.  Steriods on slow reduction plan.  Still immuno -suppressed, but getting stronger.

I have said it before that I use the recurring cycle for needing blood as my measurement of how things are progressing, as this is how we lived in 2010.  Back then, every 2 weeks B would go to infusion for 2 pints of blood like clockwork.  So, it was just thrilling for me to see this Friday come and go and B not having to get infused with his usual 2 pints of blood.  His will get new labs on Monday and this will show any changes from over the weekend.  It is likely that he still will not need blood.  This is what we have been waiting for.  The other significant item is that the platelets are actually rising, instead of holding or lowering slowly.  B hasn't had an infusion for platlets since June 27.  His threshold for infusion was 20 so he may have gained to a level of 30 with the infusion.  As of Thursday he was at 62!  All this is just so encouraging to us.  We still are watching for any little signs of relapse for the side effects of this treatment or the medicine.  But as we do this we are also hopeful that we are slowly moving into a new phase of day by day recovery.

This process has been a long effort.  As B starts to feel a bit better he is getting ainsy to do more things.  The problem with this is that he is still immuno-suppress.  He still cannot be around a lot of people, shake hands or eat from resturants, even though he was given a short window for this activity about a month ago.  Every little liberty won is very exciting both in terms of recovery and just being able to participate.  So now B is looking for activities to do in his extra time.  He finally has picked up the guitar he has had for years.  So we'll see what the result will be toward the end of the year.  All in all it has been a trying but sucessful year so far.  We all know that life waits for no one but once in a while you get a pause.  We have been so grateful for all the friends that have been following B and his journey and continue to pray and follow up with him for encouragement.  It has been a true blessing.
Until next time,
Hopeful Believer.

July 22, Day +174 Venturing out!

"Just the Facts"--  Despite the medicine, blood levels seem to be holding!  Other minerals are being challenged. Lab attendance reduced to 2 days a week.  Able to eat triple washed lettuce.

Things seem to be progressing like I thought they would 3 months ago, but I am told repeatedly that the recovery is unique to each individual.  The best thing that I have to report is that just this past week, B was able to go a full 2 weeks before needing blood.  The significance of this is that this has not happened for over 7 plus months.  You may recall that I mentioned that in 2010 B lived on blood transfusions every 2 weeks.  His range was from an 8 to a low of a 6 (which is pretty low).  In January he was going every week and just before the transplant he was down to 5 days.  So, all this means that all the work and tough time of recovery has been worth it.  Those wonderful little super cells are really reving up the production work.  So not only have they recovered the bone marrow, but now they are working on getting blood production back up to normal.  B still has a ways to go before not needed a blood transfusion, but this is what I use to measure the results.  He is still on lots of meds to help manage the body chemistry.  It is amazing what a delicate balance is needed for all these elements in the body.  Sure makes you think of the master mind who put it all together!

The other great news for B is that he was released to going to infusion only twice a week.  We are holding our breath on this as a few other patients we know have been here and then bounced back to 3 times and/or daily, so this new phase is tenuous at best, but we will accept the breather for now.  B was also allowed to add 2 coveted foods into his diet.  Lettuce and watermelon.  The lettuce has to be triple washed and eaten right away, and the watermelon can only be the new hybrids and he can only have the center core, and the skin has to be washed, but yay, they are so good and an treat to eat.  We have been walking regularly just before dark to keep muscle development happening.  His muscles are all weak for all the steroids and laying around, so we are consistently working on this.  The latest new medicine makes him highly susceptible to skin cancer, so we are in the shade and out of the sun all together.  These adjustments to our lifestyle are minor compared to the hope of full recovery, which we believe is in sight. 
Until next time,
Hopeful Believer.

July 12, Day +164, Time to Breathe

"Just the Facts"--  2.5 weeks of GVH rash...again, and some new medicine, we think it's working, lots of sleep, but getting a clear head and despite the medicine blood levels seem to be holding!

Well, I know it has been 2+ weeks since I have written.  It's has been a busy 2 weeks for me.  I took a home vacation, worked the Del Mar fair for a friend and gave my daughter some much needed time off from taking B to the docs and infusion.  B and I had a couple full days at infusion and had 2 doctors appointments during that time.  We also were able to get out to the cove for a picnic on a beautiful midweek day.  So life is a bit back to normal now, at least what we think is normal for us.  I'm back to work, B is on his usual 3 times a week schedule at infusion and a doctors appointment once a week.  During this past couple weeks we have been battling the GVH rash that seems to linger just on the cusp of explosion.  The Big Doc put B on a new type of medicine for this.  The intent is to be able to reduce the steroids (which we had to increase slightly) for this latest rash invasion.  A couple of the side effects of this new medicine is it makes B really tired.  He can take a 2 hour morning and afternoon nap and still sleep at night.  He is also very sensitive to sunlight and cannot be in the sun at all.  It also keeps him very immuno-suppressed and lowers his blood levels.  The upside is we are seeing the rash recede, and so far the blood levels seem to be holding.  We take this as encouragement as they should be diving with the new meds, but aren't, so that means that the blood super cells are working in the bone marrow and producing blood, yay! 

We have a some extra doctors appointments in the next week to track some of the additional medicines B was put on about a month ago for some of the side effects.  Also it is good to be checking all this out.  We also will see his new hematologist.  You may recall that the doctor that was treating him in 2010 and really moved him toward the bone marrow transplant treatment, died unexpectedly in December.  We will be seeing the new replacement.  This new doctor has exposure to The Bone Marrow Transplant Program and the delicate process a patient goes through, when essentially their entire blood system has been exchanged out.  I recently heard it described this way and it put a whole new perspective on what really is going on and how significant the process is.  We are hoping for improvement now week by week, just making sure the rash is beaten back.  That seems to be the current enemy on this journey.  Along the way, we have been encouraged by so many.  When I address this blog, I can think of so many names and faces of those that have supported us in so many different fashions.  It has been a total blessing to witness.  Not that I would elect to go through this again, but I am not sorry for the gifts of so much love and caring and friendship shone.
Until next time,
Hopeful Believer.

June 23, day +145 Calm after the storm

"Just the Facts"--  Home from the hospital, new catheter in arm.  Feeling better each day. Getting new strength in legs!

B came home from the hospital this past Monday evening.  I hesitated to write, as the last visit he turned right around and ended back in the hospital, so I was holding my breath a bit.  That first night back again was a bit touch and go.  But let me back up a bit.  The replacement catheter that they put in 2 weeks ago now, was taken out this past Friday.  The doctors from Infectious Diseases confirmed that B had a bug from infection in his catheter.  So they were pumping him full of anti-biotic and watching him over the weekend.  They were running blood cultures to test for the infection.  On Monday the put in a new catheter in his left arm, boy that was another ordeal.  This event is bitter sweet for him.  He loves not having the chest catheter, however he cannot put pressure on this left arm or the catheter with pop right out.  So much for the bridges that he does all day long to build strength.  Monday night was tough as there was some bleeding still from the new catheter and that always causes some stress, as he is still platelet dependant.  His skin is so fragile that they tore some when taking off the tape, so that just added complication to an already compromised area.  His body seems to be healing a bit each day.  We are still watching for the GVH rash, as it likes to rear it's ugly head once in a while.  As the steroids get reduced bit by bit that allows for the rash to get aggressive.  The new strength in his legs is exciting and is a noticeable progress.  His mind still needs to get clearer, but day by day we inch toward being completely healthy. 

The last 2 weeks have essentially been a blur, with 2 ER visits, 2 hospital admittance and doctors and all the wild health issues that got us there.  All that said it was nice to get B home and of course he was elated to be back home again.  It was our daughters birthday today and we celebrated her.  She has been such a wonderful help to me in all this.  Too much really for someone so young, but she has done a phenomenal job and really truly taken great care of her daddy.  We shared a short picnic at the bay to help celebrate.  This was typical of what we would have done pre-disease.  So it was a taste of our old life and provided hope for the future, that B will be well again and things although won't be the same, at least they will be much better than now.  We look forward to the future and to what the Lord has for us.  "Where there is no vision, the people perish",  wisdom from above and very practical for today's living.  We are blessed to have a tight, loving family that supports each other, and the vision and hope for the future.  Happy Birthday girl!
Until next time,
Hopeful Believer.

June 16, Day+139, Is this a joke?

"Just the Facts:--  Another hospital day, doing better, loaded up with IV anti-biotics, clear mind, but noticed some slight issues later in the day.  Continuing to adjust medicine.

So the last time I wrote, was 5 days ago.  Seems we have lived a life time in that 5 days. B had just been put in the hospital for an injury and problems with his mind clarity due to the meds he was on.  Our biggest hope was that B would be released in time for our daughters graduation.  He was very agitated about this and some other items that happened on Sunday night.  So I needed to spend the night on Monday night at the hospital with him to calm him down a bit.   During his short stay a weird thing happen on the Saturday night, the nurses with setting up to infuse him and while preparing everything, his catheter tube burst, causing blood to spurt out everywhere, he had a dark shirt on and blood saturated that.  They fortunately knew what to do to cap it off and contain the problem.  He was then scheduled for Monday to get the catheter replaced.  As I think back on this event, I ponder the question what if, he had been at home during this time, instead of in the BMT section of the hospital with a 24 hour watch.  These catheters are set up to easily drain your fluids with a simple unclamping of the tube.  I believe that we were being watched over even in the midst of this circumstance. PTL.  So, back to getting out and making the graduation, that morning was hectic enough, having had to sleep at the hospital, then get home, clean up and dressed and drive to the event, much less wait for the team of doctors to round and assess B.  As you would imagine I get a call from B right in the middle of the event that the doctors are rounding.  The ceremony continues with our Pastor being very gracious to our daughter, knowing her dad was not able to attend and witness and share this mile stone with her.  He was standing in the gap, so to speak and he did a lovely job of it.  Anyhow I am driving off the campus and I get the call, "I'm released, come get me".  Kinda bittersweet, but glad to get B just the same.  We didn't actually get out until 4pm, it just takes hospitals a while to print out all that NCR preprinted paper for you to sign, I guess.

We finally get B home, try to have a calm evening, and get him used to being at home again.  He actually does pretty well, having just been in surgery for the catheter the day before and under the microscope for a few days.  The next morning he wakes at 6 and says he is lightheaded.  This is understandable considering all the medicines he is on, but this was a bit different.  I helped him to the bathroom, then back to bed,  then he got cold, and felt weird.  I got the BP cuff and took a reading....ut oh, super high, then checked the glucose...that was OK.  Piled on the blankets...got some cereal and liquids in case of dehydration.  Things seemed to settle in the next hour, wasn't cold anymore, BP was better, but heart rate was high.  He went back to sleep and I moved on to get to work, having had such an up and down attendance in the last week.
I talked to our daughter several times to keep tabs, but then was told he was too lightheaded.  He had a docs appointment in the morning and we weren't going to miss it, so I left work, to help get him there.  When I got home I noticed he was burning up.  He wasn't in the docs for more than 10 minutes when they moved him down to infusion and starting labs and testing. During this session, he began to get really cold, and then went into a full blown Rygers event.  He was then carried away to ER via ambulance, where, (sometime I wonder if they really know what they are doing in there?) he was then admitted back into the hospital.  It turns out that the original catheter's tip was infected and when they removed it on Monday it left behind some bacteria that floated into his system.  The caused septic poisoning and they had to IV dose him with major anti-biotics.  This was the first day in a week that he woke with a clear mind.  These past months events remind me of a story in the Good Book, about a really good man that encounters all sorts of trouble.  The gist of the story is to see if the man turns from his faith.  Well, he passed the test, but his wife doesn't fare so well.  I think the inclination for a person enduring hardship is to cling even more tight to his faith.  I know that has been the case for us, and I hope you all know where to turn during difficult times.  PS, pray for me, so I don't go down the road of the good mans' wife.  She blew it!  Thanks again for all the love and prayer and support being provided.  We are nearing the end I can feel it, but still a few more bumps in the road to get there.  Oh, and Congratulations to our daughter graduating!
Until next time,
Hopeful Believer.

June 11, 2011 Day +134 What's going on??

"Just the facts"-- Back in the hospital, still dealing with some GVH, still on some steroids, and a new side effect that is hard to deal with.

Well, have you been wondering what in the heck has been going on?  Me too, sometimes.  I will start with letting you know that B is back in the hospital, but not for why you might think.  I have always known that being on steroids for any length of time is essentially not good for you.  This is why they are measured out in various formations and usually go from a lot at first to less and less.  But there are other side effect that don't play well with your body or your mind.  Well after 3 months of being on steroids, B has been experiencing a couple of side effects.  The first one is steroid induced high glucose.  Otherwise known as diabetes.  So you are informed, he does not have diabetes, just steroid induced diabetes, which means that once off the steroids this side effect will go away.  The second side effect crept up on us and caught us a bit off guard, this one plays with your mind, and not in a good way.  We have been trying to manage it with better sleep meds and schedule, and 24/7 watch, but this past Thursday, which will go down in a record book as a really great, but also very trying day, some events happened to force a better course of action.  B saw his big doctor on Thursday in the afternoon.  He had had a great day with my mom, tracking the sailing races and eating some good Italian food.  He was pretty excited and talking a lot when the doctor revealed the results of his latest bone marrow biopsy.  The results, are you ready for this.....were that the bone marrow is now free of any scar tissue that was preventing blood production.  The marrow is clean and young and healthy!!!!!  Such wonderful awesome news.  Truly an answer to prayer!  We thank each and every one of you for partnering with us in your support and prayers.  We weren't sure we would ever hear news like this.  So now you know why this day will go into our record books as a banner day!  

On this most wonderful day we also were tried, we had some drama that took us down a road that was difficult and seemed unfortunate, but I have to say that we were being watched out for all along.  B fell and hurt himself, and we had to call in the ambulance and take him to the hospital.  Amazingly nothing was broken or fractured, just 5 stitches to the chin.  It was a lot of drama as B's mind was not cooperating with the events of the injury.  To help this situation on Friday we admitted B back into the hospital so the docs could assess him to get all his medicine working for him and not against him.  We are still working through this process.  Have you ever had a zenith experience or an abyss experience?  Well we got both on the very same day.  For me it was chased with a 40 hour lack of sleep session.  Saturday was a much better day all around.  I would like to thank a few people that were available to assist me during the crisis, first, of course were my daughters, while although distraught could follow instructions and had enough clarity to pray with me.  A neighbor who I just found out flagged down the ambulance and directed them to our home.  And a very special brother in law who came when called and rode with B to the hospital and kept him company while I was dealing with admin stuff.  During a very trying time in his own life he sacrificed on our behalf and for that we will always be so grateful.  If you could keep him in prayer, as his father passed away today.
So you can see we are not free from troubles but with support and prayer and the helping hand of our God we can make it through trying times.  This we do know and have been tested on.
Until next time,
Hopeful Believer.

May 25, Day +117 Food from beyond!

"Just the Facts"-- A week of measuring tests and shots, got blood and platelets, now able to eat hot food from restaurant, but not at the restaurant.

Today was a happy day for B.  He asked the big doctor the question, "when do you think I can eat food from a restaurant?"  The answer was now! yay!  So of course I got marching orders as to what to get, but where he wanted to go was too far to keep the food hot, so we ended up with a burger from In N Out.  He could not have any lettuce or tomato, but still really good.  It was a celebration as the blood level we have been testing was the lowest before dinner reading we have had since we have been testing.  I think maybe getting 2 bags of blood helped that.  He has been biking to help keep the blood level at a good measure, and did I say that B tends to be a bit competitive?  Well, he has been biking for 4 to 8 sessions of 12 minutes/2 miles each time.  Low speed and easy, but when he realized this would help both the blood and everything else, he was on it. Now don't think he is ready to rock n roll, he barely makes it to the couch after a cycle session and says it is the hardest thing he has done.  But he continues to push himself and reach for a fully healed body.  We still have a ways to go, but today was a glimpse of the future.  We are all so happy to see this day.

B is still on a truck load of steroids and this is keeping his system in an immuno-suppressed state, but his body is working hard to keep the protective blood levels working.  Once all the GVH/rash gets out of town, he will be able to get off those meds.  Again a day we are anticipating.  These meds effect how he feels and how capable he is to do things.  So we want those steroids gone.  It has been a long tunnel, but I think we can see a glimmer of light at the end of the tunnel.  Oh, did you see some of the hair?  Really going slow, but it is there.  He is jazzed about that too!  Right now we love the simple things in life!  Take time to smell the roses, enjoy the blue sky, share a great smile, these are all worthy things to allow your soul to breath. And breath is a gift, given each and every day, by our loving God.
Until next time,
Hopeful Believer.

May 21, Day +113, We're still here!

"Just the Facts"-- What a week, good labs except for one, another midnight trip to the ER for an off the charts level. Still very week, but having to keep exercising.

B seems to be averaging about 1.5 weeks between blood infusions, which has increased from 1 week.  We are not quite able to make the 2 week mark yet, but that may come soon.  In the meantime another hiccup has presented itself and this one is tricky to manage.  We are watching this level and the very first time I tested the reading was so high the range stated: "Call the Doctor"  The bummer was that it was 10 pm, so we had to wait 2 hours and test again, which didn't go in the direction we hoped it would, so off we went to the ER for another torturous night waiting, getting IV fluids and more testing.  We were finally released to go home at 6am the next day. ugh!  I don't know about you, but I need my beauty sleep.  B was able to cat nap for an hour or so in between testings as he was laying down.  I was on a fold out chair.  Oooops, sounds like I am complaining.  Anyhow, we have spent the last few days working on a rhythm to get this new phase under control as much as we can.  To top it off, B's diet has shifted once again, so what he was eating last week no longer works this week.  But, we do have good news and that is the protein shakes we are giving him seems to be working and putting the weight back on.  He checked in at 147 this week!

The latest on the hair report is that it is coming in, but still sparsely and a bit wild.  When it finally all comes in, it will be very interesting, still cannot tell the color or texture or if it will be as thick as he once had.  He still does have that mustache and is set on keeping it until head hair is in full bloom.  We had to extend his handicap placard as it doesn't look like he will be driving anytime soon.  Bet, you are all happy to hear this!  I would choose to stay off the roads if they allowed him to be driving right now.  For all the difficulties we are enduring, there are always sweet blessings that come our way.  You have to be looking up to catch them and cannot be so self absorbed or you will miss them, but they are very special and delivered at just the right time.  So thank you for all the blessings!
Until next time,
Hopeful Believer.

May 16, day +107 I think I can, I think I can, I think I can!

"Just the Facts"--  Surprisingly did not need blood or platelets today! That was great news, feeling good, but have the slows due to meds.

It is always very exciting when you go to infusion expecting to be there for hours getting your needed blood infusion and then to find out, yea! you don't need them today, as your levels have held or better yet, improved.  This is also the report you would expect at post 100 days, however we have come to learn that in this journey, there is not an established path and that B is forging his own unique path each and every day.  Because of this, it is even more exciting to find out that his levels are holding and he didn't need blood.  He seems to improve just a hair each day, no pun intended, but that seems to be growing too!  We do still have set backs, as today he weighed in at 139 so he has lost 8 pounds.  This is all due to his glucose shooting up and he does not want to start insulin treatments, so we have shut down all the sugar, which was arbitrarily adding pounds.  I didn't know that each day there were root beer floats being consumed.  The daughter caregiver and her dad were in cahoots.  So we are beating the glucose back down and working on real calories to build muscle and strength.  The latest meds are giving him a challenge, it makes him foggy in the head and weak and fatigued.  He had a recurrence of the rash, but not nearly as aggressive as before.  All in all the real test we watch for is the blood production and that shows signs of working, and for that we are encouraged and feel blessed.

This journey has been going on for 5 months now and even though we think we are through the worst of it, we still have a ways to go.  B still cannot drive, or work, or eat like the rest of us.  He is still immuno suppressed and cannot be around people.  Our family still has to be careful about being around lots of people and anyone sick. Our youngest daughter graduates from high school this June and it is my prayer that B will be healthy enough to attend this milestone in her life.  She has experienced most of her senior year without her dad being involved and that has been hard on us all.  But I know the Lord has equipped her with strength and character to deal with this difficult phase of her life.  He does not promise us all a rose garden, but does promise to be with us during the desert patches of our lives.  I have felt His presence and have come to rely on Him during this difficult phase in our life.  I recently saw some friends and just the wonderful hugs and well wishes and blessings to pass on to B were wonderful and so uplifting.  I thank all of you for your kind and generous support.  Truly you each have walked with us on this journey and we so appreciate it.
Until next time,
Hopeful Believer. 

May 8, Day + 99, You've come a long way babe

"Just the Facts"-- Mouth is healed, weight is holding, liver is healing, rash is being held at bay, but is ready to rage if we let our guard down.  Levels looking good.

Well it has been a week since I have written a post!  I have had a very busy week.  B had GVH of the mouth and after the meds got going from one day to the next,  it was completely healed!  He says it was a miracle.  Really you could see the gunk on his lower lip pretty easily, then the next day it was like a smooth, clean lip.  Amazing.  We attribute it to 2 things, 1)  he had special mouth wash designed to work with GVH of the mouth, and 2) we came off of the IV meds and began a new med to help fight GVH and the other meds we have always been taking, now is able to work without interference from the IV meds.  I do have to say that it has been really great not going to infusion every single day.  Now B goes on Monday, Wednesday and Fridays.  He gets a blood draw, then has to wait for the lab results, based on what the result say is what determines if he can go home or get some type of infusion.  Friday, he had to get both blood and platelets, so it was a very long day.  But one thing I have noticed is that for a while he was needing blood every week, but the past few weeks he has been able to go a week and a half before needing blood.  So I am expecting this trend to continue and grow to every 2 weeks and so on.  This is very exciting to us and makes us think he is well on his way to recover.

Energy seems to be an elusive thing most of the time.  B does have moment of energy and it seems to show up at very odd times.  Lots of times he get energy in the middle of the night.  His head will also clear of the fog during this time too.  So he is awake and watching TV or listening to music or reading until he tires again and can go back to bed.  This has been going on for at least a month now.  It's nice to feel good and be able to think, but he would like for that process to happen during the daytime.  This latest medicine he has added to his routine and takes it 3 times a day causes drowsiness.  So he is tired and dragging usually during the day this past week which lends to a lot of watching the TV.  He has been enjoying watching the cooking channel.  That is about the best he can do with his brain is to think about what to eat.  The unfortunate part for me is that he has become very specific as to how his food is prepared.  I get a very distinct detailed orders for what he wants, and every little part of the process is recited to me to make sure I do it correctly and to order.  I think " what do you mean, I can't just slap it together and slide in front of you?"  :)  But most of the time I am a good soldier and follow orders.  He still weighs in at 147 lbs.  Maybe this next week we will hit the big 150.  I know we are looking forward to tomorrow as we hit the significant 100 days!!  Thank you all for coming along with us on this journey and keeping us in your prayers.  It has been a hard and trying time, but your support has helped us in so many ways.  Thank you!
Until next time,
Hopeful Believer.

Apr 30, day +91 freedom bound second time around

"Just the facts"-- blood levels are improving again,
Chem levels are improving as well. Last day for IV meds! Hair growth is slow going.

It's been 5 days since I last updated B's activity. We have had a lot go on. First, I'm not sure I mentioned last post that B had a crown pop off, well we got that put back on. Putting it back was easier than all the prep. B had to have extra platelets, a note from the doctor to the dentist and take a large dose of an additional antibiotic. The crown was the simple part, but it could not have waited, as B's dry mouth has turned into full blown GVH of the mouth. Ugh. This is very similar to the body rash but in the mouth, in a wet environment, you can just imagine. We are back to bland soft food for a time until we can get this to back off. This development has once again added a new medicine to his routine. This one is for the mouth, a special medicated formula for the mouth used like a mouthwash. We also just found out that he had GVH of the liver! This is in part, why we have been at infusion every day. Those levels are finally getting to normal and we have been given a release from coming here every day. Actually we get tomorrow off for the first time in over 2 months! We are very excited about this.

We keep a close watch on the hair growth, but its like watching grass grow. I should be taking sequence photos of the growth, but that is just to complicated for me right now. In the mean time B has grown a mustache and hair just under the lip. He is so excited about this hair growth. He says that he is not shaving this off till all his hair comes in, it could be a while. He can take on several new looks, non of which any of his friends recognize. Several times he will be walking, say hi to someone he knows and they say hi and walk on not recognizing him. Oh well, just as well because the delay in the walk or the extra conversation will take any extra energy he has. B weighs 147 lbs as of today, so the ice cream is doing it's work! If only I could be on that diet.

Apr 24, Day +85 Happy Easter!

"Just the Facts"--  Had a pretty good day, weight is stable at 145, rash seems to be backing down again. Energy is hard to keep consistent.

It has been an interesting few days, since I last wrote.  The improvements seems to inch along.  We have been focused on this one drug that doesn't appear to be working.  It is a different manufacturer that the first prescription we got.  This drug is suppose to keep the GVH rash at bay, but while it is not registering, the rash has been coming back a little bit each day.  This first thing we do in the morning is check to see how red B is.  He says it is like having a sunburn.  Well we ran out of this drug and got a refill, this time another manufacturer, and wouldn't you know after one days dosage, the rash is retreating.  As of now, a couple days later the rash continues to retreat, so we are sure that the other manufacturers drug doesn't work.  As the rash retreats, B works on getting his energy back.  It is hard and he needs to focus.  Any activity he does, draws from a very small resource and empties it.

One of the many side issues for BMT patients is GVH of the mouth.  Because of this possibility they insist that all patients make sure they have their dental work done prior to this treatment.  We did this before B went into the hospital.  And till now his mouth has done great.  But with the drug to prevent this not working, this has allowed an open door for some mouth GVH.  Small fleshy sores inside.  Also with all the drugs a patients tends to get "dry mouth".  This is fairly common things for patients on lots of meds.  This particular side effect will complicate GVH of the mouth as well.  So just in time for the refilled prescription of the working medicine to kick in and reverse the mouth GVH.  But in this process B lost a crown off one of his molars.  So to go to the dentist we have to schedule so that he is filled up on platelets, takes an anti-biotic prior to his visit and I have a prescription from the BMT doc to the Dentist.  They have to just be really careful with their work.  We are hoping the sores retreat enough so that when the dentist works on the tooth, they are not bothering the sores.  Boy, could this guy just get a break!  In spite of all the issues, we had a good weekend, were blessed in many ways by family and friends and by the gift of Life! Happy Easter to all.
Until next time,
Hopeful Believer.

Apr 19, Day +80, Sprouts of Spring

"Just the Facts"--  Consistently gaining a few pounds, blood levels still bouncing but at high levels, rash seems to have an ebb and flow rhythm.  Feet 99.9% peeled!

We seems to be having a fairly smooth week. Maybe a slight incline of improvement.  It is a slow going road and you would think we would be tired and impatient, well maybe we are a bit, but what is there to do about it, but have a good attitude and look forward to each days new mercies.  Along the way we are watching the new sprouts spring up on B's head.  I cannot tell you just how excited B is about getting in some hair.  He has been told by several BMT patients and read some stories of those that never grew their hair back.  I don't think he could stand that.  It's not vanity mind you, he was told by all the nurses just how great he looked without hair, and they should know.  But B cannot stand the feeling of not having hair, it has been driving him crazy.  So hair is good even if it is only about 3/8 of an inch  :)  I have a funy picture of one of our daughters when she was little, that I am waiting to see if there is a hair do resemblance.  The pounds can't help but come back if you can see what this guy is eating every day.  Good, healthy food, cooked right way, and eaten right away, and lots of it.  Today's weigh in was 144!  He still has skinny legs and arms, but he is proud to show me a little muscle in his arm, still a guy.

Going to infusion every day for the past 2 months has been a pain.  Necessary, but a pain just the same.  For B he has a couple hours of sitting at the very least.  Well that would be OK for you and me, but B doesn't have any, I mean any, padding where he sits, so for him it is an uncomfortable task.  He deals with this by reviewing his lab reports every day with annul attention.  This is good because it causes him to focus and that is not easy to do with all the drugs and chemo brain.  We watch the chem and blood levels of the lab report like we are watch the new hair sprout.  These things remind us of the Springtime we see all around and the new life budding forth.  We are living and breathing in this new life every day.  In the midst we are grateful for the grace shone to us each day, by all those around us.  We have seen kindness in the most unique ways and are blessed every day by these blessings.
Until next time,
Hopeful Believer.

April 16, Day +77 Watch out for that Rash x2

"Just the Facts"--Able to get right up and not have to think about each movement. Eating well, maintaining weight and so far so good with no bad side effects, but feeling a bit weak today.

I said it before, we are waiting and holding our breath a bit to see if B will continue to improve and not get any bad side effects.  It looks as thought his GVH rash is gaining some momentum.  It has been slow to present but it is definitely lurking.  This is curious as the pill that he takes to combat this is not showing up on his lab report.  His dose was increased over the past week from 8 pills a day to 14 and still not showing up on the labs.  We suggested that the refill was a different brand and we were told that that was not the issue.  At the latest Doctors appointment, this subject became a hot topic and now has the big doctors attention.  So we are hoping something is corrected on this soon, as we are watching the slow progression of the rash, and B is just coming to the end of the peeling feet, so we would really like to not have to go through that again.

On another lab report they did last week, but just got the results back, it was confirmed that B now has 100% of his donors blood.  There isn't any left of his A neg blood cells.  That was a great result and one we are rejoicing about.  You might have noticed we are at day +77,  we have come a long way and have been through a lot, yet we still have a ways to go.  B weighed in at 142.5 today and even though this is a great improvement, he needs to get back to 170 to be himself again.  He is still very skinny and the muscles all need to be rebuilt.  Strength and endurance are going to be next on the training program after we get a bit more weight on.  I have to say it has been nice to see some spunk in the guy these last 2 days!  I am so thankful to all of you that are following, thinking of us and keeping us in your prayers.  It has meant so much.
Until next time,
Hopeful Believer.

Apr 13, Day +74 Well being to being well

"Just the Facts"--  Good good day, got voice back,  showing some peach fuzz on the head and overall feeling some energy.

I woke up this morning to a sound I have not heard from sometime.  It was the voice of someone I know and love and haven't heard in a while.  B got his voice back.  It happened overnight without any sign or fanfare and really, he didn't even notice it.  I did!  It was a very welcome sound and gave me a warm, comforted feeling deep in my heart all day long.  Piece by piece we are getting B back.  He has gained 10 pounds, from the low of 132 to 142 today.  That 10 pounds has done wonders to his over all well being.  He can walk more, think more, eat more, and over all participate in life a bit more.  Of course we won't stop there, but it is amazing to see this transformation with just 10 pounds.  The other piece of good news, one which B has been waiting for with earnest, is the arrival of peach fuzz on his head.  B is so happy and excited about this.  He doesn't see what other guys see in a shaved head.  The fuzz is random and hard to see but with glasses and maybe some backlite it's there.

We got platelets today as the counts still are roaming a bit, but nothing could stop us today.  B had energy and was a chatter box all day, and ended up losing his voice again, but that was because he wore his tired old voice box out.  It was really good to see a glimpse of the old B coming back.  He is on his way to being well.  There are many things that all of us are learning through this experience, some are simple and some are very deep and complex.  B shared with me that he is learning to "Trust in the Lord"  sounds simple, right?  But there are many complexities to doing just such a thing and yet, it can be very simple.  I am sure he will share more of this with me later.  I have found B to be very profound at times, when he shares his thoughts.  And there have been a lot of those all floating around in his mind for the last four months.  I am excited to see and hear the things he has learned and thought about and for the new life that seems to be budding forth. 
Until next time,
Hopeful Believer.

Apr 11, Day +72 The cost of fuel these days

"Just the Facts"--  Nine hour day at infusion, labs, 2 bags of blood, 2 bags of platelets, fungal meds, tired but feeling OK.  139.7 pounds!

B got all filled up today for the week we hope.  It took all day to fuel him and I don't want to know what the cost was, whew, I know it is a lot.  So far he is feeling pretty good.  Still working on some small issues, but all in all he is progressing a little bit every day.  The end of last week his meds were adjusted again.  This always needs "a wait and see" attitude to watch what his bodies reaction will be.  We are noticing some little things here and there, but most are manageable.  The ice cream seems to be having it's way and  putting on some pounds.  Of course there are plenty of baked potatoes, mac and cheese and homemade breakfast sandwiches and piled on meat bagel sandwiches...making you hungry huh?  I believe B is getting a bit stronger with every pound, but it is just bit by bit.  So we will be patient and accept each measure and anticipate good lab reports.  At day +72 we are into the last 30 days of the critical 100 day monitoring cycle.  We have come a long way.

When you are ill for a while, it is easy to get discourage.  You tend to be physically weak and that plays on your mind and heart, even if you are strong in those areas.  Discouragement is a sneaky enemy, as it is like a slow bleed, a gradual erosion.  As your circumstance grow difficult and prolonged, discouragement can settle in, layer upon layer, until you want to give up.  The Lord tells us to "be strong and of good courage, to not be afraid, for He is with us wherever we go. Joshua 1:9 We believe this is true and have experienced it. We have chosen to live by faith in these Truths. rather than disbelief.   If you are discouraged I would encourage you to pick up the Good Book and satisfy your need.  It has the answers you are looking for.
Until next time,
Hopeful Believer.

Apr 8, Day +69, Watch out for that Nurse!

"Just the Facts"--  Working on a day schedule, got out of the car today with a spring in his step, felt OK, didn't need blood or platelets.  Still getting infused medicine.  Eating like a horse.

I may have mentioned previously that B's emotions are quite sensitive.  So if anyone responds to his lab reports and is too aggressive or seems hesitant he tends to over react, thinking that something is terribly wrong.  Today, he had a very enthusiastic nurse that was really into looking at his lab reports.  She saw something, he could tell and then she excitedly came over to him exclaiming that they hadn't run a virus test in over 4 weeks and that she was going to run one.  Well this sent him into quite a scare and he called me at work to ask me to get in touch with his coordinator and let her know they were running test!   Well I did what was requested and it turned out that they had been running this test every week.  This was the work of an over eager nurse.  Not the first one we have run into I might add.  Everything worked out but it did stir the patient quite a bit.  B didn't need any blood infused today, which was a nice unexpected surprise.  He was sure that he would need some today, having seen the numbers from yesterday, but the great news was that our little super cells were working hard and producing blood.  The medicine B is on plays a big part in how he feels from day to day and how it is working internally as the grafted cells continue to battle and make a new home.

B is almost continually in a fog, both mentally and physically.  He just cannot jump up from a sitting position.  He actually needs to think about the process and then muster up the strength and gumption to do it.  This is pretty typical day in and day out, so today, when he was able to just jump out of the car and go right into the infusion, he was amazed.  The thought process that usually goes with that function was on automatic pilot for a moment just like the rest of us.  Of course this did not last the entire day, but it was a sign of improvement and it was measurable for him.  So today anyway, it was good news and we saw some progress.  Of course all this could change tomorrow, as that seems to be how it has been going, but we hope not, as tomorrow is day +70 and that means we only have 30 days more to get to day+100, so we should be seeing better days as we go.  Prayer is powerful and we have has so much prayer offered on our behalf.  That has been amazing.  I just found out my favorite little person is having a really hard time maintaining a stable count for his type 1 diabetes.  His numbers are way to low, so he is spending the night with my sister and they are watching him closely, testing him every 15 minutes to make sure he doesn't slip into a coma.  If you wouldn't mind could you say a prayer for this little guy?  He is 6 and has type 1 diabetes and is the best little guy you would ever meet.  Thanks so much.
Until next time,
Hopeful Believer.

Apr 6, Day +67 Food Dreams

"Just the Facts"--  Trying hard to gain weight, blood levels bouncing up and down, so infusion is a busy place. Feeling symptom free, but extremely tired.

Can you imagine being able to dream up any type of food concoction to eat without any weight gain concerns?  Well this is exactly where B is.  They tell us that his metabolism is processing at a very high rate?  Can't imagine why, as the best he can do at times is a slow stroll around our courtyard a couple times a day.  He doesn't even break a sweat.  It's a good thing too as that would most likely result is a pound or two lost.  He is still weighing in at 134-135.  We can't seem to get above that weight and stay there.  The shakes and malts are having a good time at our house.  Bagels and cream cheese are high on the caloric scale, mind you all these things have to be pasteurized, homogenize, overcooked and process packaged for B to be able to eat it.  He is about as far away from a healthy organic diet as you can get.  Most people are opting for pro-biotic these days while B is on a daily diet of anti-biotics!  We are still dealing with the body peeling, however most of the body has shed, with the exception of the feet.  They are still in a full blown peeling cycle, which requires nightly grooming and moisture application, chased by thick soft socks.

At this stage of recovery, we are holding our breath a bit as the last few times we have been here, the bottom had dropped out of the shoot and B came down with some horrific side effect.  So we are praying that we have seen the worst of it and that B is on a smooth incline to full recovery.  Still we take it one day at a time.  Tomorrow worries are not for us today.  The Bible tells us that God is keeping a watchful eye over us and our future.  And the Day will come when you will have a whole healed body and Life!  We are thankful for that encouragement and will keep our trust in Him.  Thanks to all you pray'ers out there, we could not possibly have done all this without you!
Until next time,
Hopeful Believer.

Apr 2, Day + 63 Fueled up and hands free

"Just the Facts"-- 2 Bags of blood and 1 bag of platelets, a new belt and feeling good!

B knew that his levels were slipping a bit towards the end of the week, and the infusion staff was thinking ahead and prepping for a blood and platelet infusion for Friday.  So all this was infused on Friday along with an anti fungal medicine, which he has been getting every day for the last several weeks via infusion.  This was initial given in place of the bad medicine and also helped to correct the yellow eye syndrome.  Those levels are almost back to normal after 3 weeks.  We are careful to watch for any symptoms after a medicine change as that is usually when we see something present.  B was a bit discouraged yesterday when he was getting infused because he realized that all the blood levels were lower, but really all the steroids have a big part in this and that is contributing to his needed more.  Today he was fueled and feeling much better.  Eating helps and feeling good helps too.  When he feels good he is able to think and actually do more during the day, which isn't a lot but still better than just sitting in his lounge.

While feeling so good today, B and daughter went on a field trip to get a new belt.  They found just what B wanted and he was so happy to have a belt that fit.  Now he can walk hands free, because he doesn't have to hold on to his pants to keep them up anymore, with a good fitting belt.  It's the simple things that bring such joy.  That is a life lesson we all keep learning over and over again.  So keep you eyes and heart open for the little simple things that bring joy, and take the time to enjoy them.
Until next time,
Hopeful Believer.

Mar 30, Day +60 Dreaming Crew Classic

"Just the Facts"--Up early, feeling OK, getting clearer in the head, working on talking better, levels are up and down a bit, but all is expected.

So B is weighing in at 137 pounds.  Really, he is just a stick.  Until this past year, with all the years of surfing he has always been a bit of a beefcake, if I do say so, myself.  He has always done his own exercise routine.  His habit was to do push up where ever or when ever he was in the house.  He would do this to the tune of 1000 a day, no kidding.  So today he was complaining about just how tired he was as we headed to the end of the day, so I reviewed with him what he did during the day and turns out all the usual stuff, except for the 200 push ups he said he did!  Well duh, I guess that would make anybody tired, especially a skinny, immuno-suppressed BMT patient who is within the first 100 days of recovery.  We were warned that the care giver was going to have to push the patient to get going and walk and workout, as it was the best way to recover.  We heard this time and time again from various sources.  But deep down I knew this would not be the case with B.  He would take his recovery process very serious and be diligent to work on it from the get go.  Guess I was right about all that.  Gee whiz, 200 push ups!

On the flip side of all this is the enjoyment of shakes, malts and ice cream.  The girls and B are testing out flavors and different concoctions to find the most pure and yet satisfying treat, while still being pasteurized.  They are having fun to say the least.  Of course I am not participating in this activity, as I have found some of the weight that B has lost.  I joke with him that he can have some of mine back!  The last few days have given us a glimpse of light at the end of the tunnel.  We truly hope the progress we have had a taste of will continue without any new hiccups.  We truly appreciate the kindness that has been shone to us by so many.
Until next time,
Hopeful Believer.

Mar 28, Day +58 Shakes, Malts and Ice Cream

"Just the Facts"-- Weekend recovery, eating much better, able to walk better, Head was a little clearer today. But tires by the end of the day.

One of the things we get when we go to infusion every day is a print out of the labs, from the blood taken.  The report reveals the chemistry and blood levels.  The liver/kidney issue is declining nicely but it has been over 2 weeks now and still not at normal levels.  It only took 2 and half days on the "bad medicine" to go out of whack.  But it has taken a lot more time to reverse the effects.  B still needs to get stuff, like today he had platelets and some potassium.  Saturday he got 2 bags of blood.  All these make him feel better.  The peeling continues and now the last frontier is the soles of his feet.  This is a difficult area as the skin that is peeling is very thick here, this leave behind very new fresh, almost raw skin.  So you can imagine the difficulties of making sure we protect this new skin and avoid any cracks.  The other thing I haven't mentioned is that B lost his voice some time ago.  His voice box is very weak and he can only squeak out words, hence he doesn't talk much.  So phone calls and visits are difficult for him right now.

We have had some success with the weight.  B's appetite has improved and he is able to eat more and keep it down.  So we have added frozen yogurt, ice cream and some shakes and malts.  We have bumped into some ice cream angels along the way!  That has been fun and most appreciated.  The end result so far is about 7 pounds.  Some would think that eating like this is a dream come true, but B has paid a heavy price to be able to eat like this.  So we continue to stuff him with healthy food and along the way allow some high calorie items to keep the scale going up.  He is worried about his muscles, so when he gets some strength he will want to lift my 2 pound weights.  Hey, you got to start somewhere.  All this is just music to me, as I see my guy come back to life!  We thank all of you who continue to keep us in your prayers and thoughts and those who support us in some many loving ways.  We are truly very blessed.
Until next time,
Hopeful Believer.

Mar 25, Day +55 Wild week

"Just the Facts"--  Feeling slightly better, still having stomach problems, but able to eat a bit more, and able to do some walking.

Yesterday was a fairly decent day.  B felt pretty good, was able to walk, talk and eat a bit.  He is still having some stomach issues even with the new stomach meds.  We were at the doctors for a visit yesterday.  Seems that the stomach issue is considered GVH of the gut.  I had this feeling in the back of my mind but didn't want to verbalize this.  So far he has have the skin GVH and now the Gut GVH.  Hope that is all.  You see there are 3 distinct kinds of GVH, 1 is called acute and presents in the first 100 days.  Then there is chronic and presents after the first 100 days and can go on for 2-5 years.  The final type is severe GVH and most don't make it with that one.  The acute GVH can be eliminated in the first 100 days as well, so we are hopeful.  We were able to drop 1 pill from the visit.  But B only weighed 132 lbs.  So the  next tasks is to get his weight back up.

Tomorrow we go to infusion and will get some blood.  This will be the first blood infusion in about 3 weeks.  To us this is amazing!  B has not gone that long without blood infusion since we first learned that B had this disease.  So this just goes to show how well the transplant is working.  So I am sure you are wondering, why does he need any blood.  He continues to get blood draws regularly and the production is not fully developed yet to be able to keep up with all the blood being drawn from his body.  So a little infusion is OK.  Now if we could just get past all the peeling, life would be doing much better.  In review we are feeling pretty fortunate, as at the beginning of the week it was looking like we might get re-admitted to the hospital and at the end of the week, we are eating, drinking, walking and able to get the pills down.  This is answered prayer!
Until next time,
Hopeful Believer

Mar 23, day+53 Med Depot for Health Improvement

"Just the Facts"--  Still feeling very weak, but able to get some food and liquid down.  Still battling stomach problems, but was able to get some walking in.  Skin peeling to the 10th degree.

We have been working hard with the doctor since Monday's shutdown to remedy the stomach problem.  This one problem seems to be the hardest to cope with yet.  It drains any energy B may have, which really isn't much.  So as of today, we have yet another new med that is to be taken 3 times a day to combat the stomach issue.  At the end of the day, no new results yet.  But we will see what tomorrow holds.  In the meantime, I have re-assessed the food and liquid and pared it back to toast at every meal with something high protein.  Liquid is room temp and mostly lows sugar with electrolytes. B was able to eat a bit more using this food approach yesterday and today was even better, although, his weight is now down to 130.  This has now become my main focus; beefing up the calories and food intake. 

I haven't shared much about the skin peel as it is really sort of gross. B is very uncomfortable with this, but can't do a thing about it.  About the only thing we can do is every night we, or I mean, I have a date with both his feet and hands and some luxurious cream.  Each area gets about a 10 minute gentle massage to help ease the sloughing off of skin.  The palms and bottom of the feet seem to be taking on an odd process of peeling.  The skin is very thick and hard that is coming off.  These were the last areas of the rash and the most painful burning, without a doubt.  So it is interesting that these areas are peeling differently.  I really cannot fully describe it without possibly making someone sick.  So I will leave well enough alone.  In all this B's attitude is still hold up.  He doesn't like the sick stomach feeling and that keeps him down, but his mind and spirit are still in tack and on a mission to get well.  Once again I attribute this to his faith and that of all those who are keep B in prayer.  You all have my deepest gratitude.
Until next time,
Hopeful Believer.

Mar 21, Day +51 March Madness

"Just the Facts"--  Labs and blood work look good, counts are holding, but feel terrible, extremely weak, declining in the ability to eat and drink, stomach problems decrease the ability to walk.

So it seemed that we were going along just fine, right?  But, I have learned not to ask, What's next?  We are very happy about the blood counts coming back on a regular basis, holding at good levels.  So you wonder why we are feeling so bad.  B is on a lot more medicine from this last hiccup with the yellow eyes.  That "bad medicine" was super aggressive in causing a problem and we are slowly working our way back from that problem, but the work is arduous.  The medicines doubled, they are harder to take than before, and we have new stomach problems that have not been felt before.  To top it off we still go to infusion every day for an IV of the other type of medicine to counter act the bad stuff.  So it was a long few days since I last posted.  Each day B is feeling a little worse.  We should be celebrating, but just cannot connect that with how he feels.

You may have noticed that we past the midway point at +day 50!  The first 100 days are critical for BMT patients.  This is the uber watch and monitor time frame to see how it will take and what the side effects will be.  We feel like we got great results, but we are experiencing our fair share of the side effects.  Due to the fact that B is feeling so bad, he declined the drug trial.  He just cannot imagine taking 1 more pill for any reason.  So even though that sounded very promising, we will pass.  I am hoping to see an improvement any time now, as he cannot go very long without eating, not at his current weight. So any prayers you could spare, we will gladly accept and very much appreciate.  Thank you for your care and faithfulness.
Until next time,
Hopeful Believer

Mar 17, Day +47 The day is going green

"Just the Facts"--  Still very weak, doctors visit, infusion visit for IV meds.  New medicine.

We had a fairly decent day today.  We only spent 5 hours at the doctors and infusion, didn't throw up and walked 4 laps in our court yard.  We look pretty pathetic, but not too many people get to see, (thank goodness)!  That rash was nasty as it has left a wake of peeling skin.  Not just on the back like a sunburn, but everywhere, and all at once too.  It is driving B crazy as he takes his hygiene very seriously.  So this is one big obstacle for him.  I finally was able to get him to gently exfoliate with a super soft mesh sponge with a super hydrating body wash.  It has been helping a bit, but he won't let me put lotion on, gives him the creeps to think about it.  We were able to get rid of 2 pills on his schedule which total 7 per day, but we added 1 old one back and 1 new one.  So we are still ahead.  This new one may turn a few heads, as this is the very well know drug from the 70's or 80's or anytime after for that matter.  Seems it is used to entice appetite or otherwise known for causing  "the munchies"  figure it out yet?  Yes, B and little 80 year old ladies are taking medical marijuana now.  All I can say is this should be interesting.

Do you believe in angels?  Well I do.  I believe that they come in all shapes and sizes and in various forms.  I have had a few angles appear here and there over the past few weeks and it has blessed us so much.  One brought by a bag or some 20 different kinds of drinks for B to try.  The first one we selected was a hit!  I have barely cooked this week for myself or the girls due to some lovely angels who have culinary gifts.  And that mailman is getting busier by the day, with such blessing of encouragement and kindness.  Then there is this one angel that never lets my cupboards or refrigerator run dry.  I continually get little e-mail blurbs from very thoughtful and timely angels sending a blessing along the way.  I can't tell you how the heart surges with a warm feeling of delight and pure happiness that an arm of love has been extended out to us.  I can only hope that I at some point in the future will act in a similar fashion when a friend in needs presents itself.  These angels will remain unnamed here, but the One who records all acts of kindness is keenly aware of each wonderful blessing and stays on top of every thought or deed performed as a gift.  Bless all you angels out there, each and every one.
Until next time,
Hopeful Believer.

Mar 16, Day +46 Weak for a week

"Just the Facts"-- Moving very slow, very weak,  able to eat a little, rash finally receding, infusion center every day.

Since the halting of the "bad medicine" the replacement medicine is currently being provided by an IV.  This IV need, causes B to have to go to the infusion center every day to get infused.  All that would be fine if we had the appointment information correct, but twice now they have had him coming at different times than was scheduled.  Normally not a problem for most people, but this just wares B out.  He sat for 2 hours waiting today until they called him in.  Then his IV only takes an hour. He just doesn't have the stamina to be sitting around a waiting room to be called in.  Tomorrow we have a big doctor visit and I plan to be there to get the 411 on this past weeks events and a good plan for this next week, meds and all.  My hope is that we can drop a few pills, as that seems to be causing B to have problems with eating and motivation.  Just 2 pills alone total 24 pills daily!   He takes about 10 different kinds of pills, some singular, some multiple, a couple times a day. ugh.  I have problems just taking 1 pill.    The good news is he gained 3 pounds, so we hope he can hold them.  Blood is still holding and platelets are hanging just over 30, which is his new low threshold.

So now, since the rash is moving out of our neighborhood, we need to rebuild our skin, which has taken a pretty good beating in the process.  B is a peeling mess and feels very grungy, but hey, it was a gnarly rash and we are super happy it is moving on.  The bladder has been doing quite well and we are hoping to come off those meds very soon.  There certainly seems to be hills and valleys in this recovery process.  No sooner do we get to the summit of one hill, we slide down deep into a valley.  All I can say is it has been quite a ride.  B will be happy to regain some of his energy as that seems to be dragging him down.  My recipe is food, sleep and less meds to help get the energy back.  Also it would be nice to find a drink he likes, we have tried so many.  Just today our daughter tried 4 different drinks before he was sorta OK with one.  This is due to his taste buds being so tortured from chemo.  It will come back but until it does, we continue to find the magical elixir for him.  Perseverance is one of my gifts and I have faith we will win this challenge!
Until next time,
Hopeful Believer.

Mar 14, Day +44, Bad Medicine

"Just the Facts"-- Not feeling so great, not looking so great, yellow eyes, stomach ache, back to the infusion center.

The last blog was Saturday, that day we spent 6 hours at the infusion center, having labs done and waiting for the results.  Well they do both chemistry and blood to check all levels.  The only item that needed attention we were told was platelets, so B got 1 bag of platelets infused and then home we went. Well earlier in the week on Thursday B was at the big doctor, and I did not go to this visit, a mistake!  He came home with a new medicine plan, double the pills and had entered a clinical trial.  You see he is really not himself and is not able to discern these things right now.  So we got in gear and started up the new medicine regime.  I usually take the time to read all this, but it had been a busy week and that just didn't happen until Sunday evening.  I noticed a slight tinge of yellow in B eyes on Saturday, but didn't mention it as I had seen this before in the hospital and asked about it.  They were just adjusting meds.  So on Sunday when I noticed his eyes more yellow, I pulled out the documents and read all the new meds, and sure enough one of the severe side effects was yellow eyes.  This is a tell tell sign of something more serious happening internally. 
So we stopped that medicine and I reported it to the coordinator for Monday morning, as it turns out his chemistry level was going awry on Saturday, but the nurse didn't pay close enough attention to it.   Now to fix things he has to go in every day to the infusion center and get infused with something to right these levels and replace the medicine he is not longer taking.  Beats being admitted to the hospital.  On the upside the rash is beginning to subside.  It still looks awful, but the pain and burning is not so intolerable.

B is down to 135 lbs, which I have to say is a bit scary.  He looks way too skinny.  Due to this, his energy level is way down.  I had to cokes him into a walk in our front courtyard.  That is rare, usually he is on the go and I have to go check on him.  He continues to be perseverant and upbeat in the midst of these uncomfortable obstacles.  But then no one said it would be easy.  The Lord loves those who are faithful.   Faithfulness  is a virtue to be prized and held dear.  It is so valuable in God's economy.  I believe that B is very faithful and truly loves The Lord.  And I thank each of you, who continue to lift him up in prayer in your faithful way.
Until next time,
Hopeful Believer.

Mar 12, day +43 The good and the bad

"Just the Facts"--  Infusion center today, 6hours, 1 bag of platelets, still have the mighty rash, and weigh only 140 pounds.

Well, it would seem that I have fallen into a new rhythm for this blog and I don't think I am going to fight it.  So you can expect to get an update about every other day or so.  Of course if there is something significant, that will call for an exception.  My sister says I should note this so that any absence of the blog won't cause any undo worry..I just figure you would realize that I am too tired and went to bed instead!  B was at infusion 4 times this week and a big doctor visit as well.  The big doctor saw his rash and went to town with a new battery of medicines.  This new cocktail make him even further immuno-suppressed,  so now we have to be extra, extra careful with just about everything he is exposed to.  That is the last thing we want is more drugs, but guess you have to just go with that for now.  B's rash is still pretty bad, but I can see improvement where his own skin is starting to show in places rather than the rash.  It is still pretty painful to walk, so that has been cut back to just walking in the house to needed areas.  It is like they are on fire, and now it has appeared on his hands.  The best consolation for dealing with the severity of this rash, is knowing that some GVH is good to have and in the long run helps the grafting process.

While at the doctors, we got the results back from the biopsy, and it revealed that all the blood in B's system is now the donors.  So his blood is now fully O neg.  Those wonderful donated super cells had and still do have a big job to do.  So far they are doing everything they should be doing and that is amazing.  Exactly what we had hoped for.  The other great news is that his blood numbers continue to work on their own and hit a level of 12 and held (RBC).  Again, this is why we did this treatment.  It has been a little over a week since B has had any blood infusion and he is at a 12!  This to us is really news to celebrate, even if our feet are on fire!  So we will continue to plod along trying to eat more to increase pounds rather than lose them and try to continue to walk to build strength and stamina.  We thank you all for your continued prayers.  It seems that this has been a long process, but truly we have accomplished quite a bit in the last 8 weeks.
Until next time,
Hopeful Believer