Dancin' in the Rain

Well, not much happening really.  I was back in the hospital in Oct. for “pneumonia” and it actually was a cold. Beginning to dislike hospitals.  Since I’ve been home, I’ve had a broncoscopy  to uncover  a CMV infection in my lung and am being treated for it.

Well, we were hoping my own bone marrow would recover and produce the cells I need to sustain life.  So, we decreased the anti-rejection drug cyclosporin and watched.  My blood cells plummeted and I am receiving RBC’s every 5 days instead of every 4-6 weeks and platelets every 2 days after not needing them for 4 months.

Didn’t work!  We have increased the cyclosporin to a therapeutic level and will wait and see.  I didn’t need platelets this morning and they think I’ll last till Monday.  They’ll be really low on Monday, but they have a unit ready for me.

We are praying this direction will return me to a life sustainable  cell count so we can let the donor bone marrow start producing the cells.  My bone marrow isn’t able to do the job.

What a roller coaster ride.  It’s only been 5 1/2 months since the transplant and we need to be patient.  It could take another year, easy.

I have weekly blood tests.  I feel fine, as usual.  So how come my blood counts keep going down?  Even with the Neupogen, my WBC has gone down.  And so have my RBC’s and platelets.  The platelets had been fairly stable for about 5 months and they are going down and my transfusions help me about  5 weeks.  It’s only been 2 weeks since my last transfusion and the count is decreasing already.  I hope I make it another week.

My doctors say to expect the ups and downs.  I have another blood count on Wed. and am looking for the “UP” part of that advice.

Looks like this will be a wait and see event. The director of the facility here was at a conference in Seattle, WA at Fred Hutchins hospital and used me as a unique case.  They all agreed that another transplant is not recommended.  I am disease free so far and that is good.

So, we will support me as necessary until my bone marrow replenishes itself.  That could take months up to a year or so.  I receive transfusions every 5-6 weeks, not bad actually.  If I were in bad shape I’d receive them every week.  I haven’t needed platelet transfusions for 4 months.  My platelets are dropping slowly, but the doctors say not to worry.  They will go up and down in the process.  The only unknown are my white blood cells and I am receiving Neupogen to stimulate them and remind my bone marrow to get in gear and produce them on their own.

So, it’s not for me to sit around and worry.  I still get tired, but am up and around and out a lot more.  Our cruising and traveling days are limited for the time being.  Peter is chomping at the bit to travel and has our next trips planned as soon as I get the word I can fly!

Life is for living and that’s what I’ll do.

Looks like life will not be easy.  The doctors are sure the bone marrow transplant has failed, but they do not give up on the possibility that my own marrow may revive and replenish the blood supply.

For now, I am making my own platelets.   Yesterday I had to have a transfusion of red blood cells which hasn’t happened for about 6 weeks. So, maybe I am making a very few rbc’s.  The white count dropped in spite of the Neupogen shots, so I am receiving shots again to keep me out of the infection  zone.

The future is unclear.  They are going to maintain me as now to give my bone marrow a chance to recover. As long as my bone marrow tests remain clear of disease, they will do this.  They have cases where it can take months to years for the transition to occur, but as long as there is no disease, it is safe.

If they disease does return, I have a chance to receive a “haplo” transplant.  That will be from my daughter, Kerstin.  Even though only half the genes will match, their is a new protocol available that treats the unmatched genes with chemo.  It would be quite a hospital stay and there are several details to work out in the meantime.  I pray this isn’t necessary but we will see.  We could know in months or years!!

I thank you all for the prayers and wee wishes.  I need their strength and support.

I have good news to share — my Mom is home from the hospital!  It was definitely a longer stay than she’d hoped for (more than 3 weeks), but she made it through and was released last week.  This virus seems to really have done a number on her though.  She’s still very weak and definitely needs to take time to build up her strength again.  When she was in the hospital for the preparatory chemo, she was a walking machine!  Two or three walks a day, often 45 minutes or more.  It was good that she was able to maintain and build her strength then, and I’m sure she will get back to that point soon.  Chatting yesterday, she said it could take twice as long to regain the strength as it did to lose it.  So six weeks and she’ll be back in fighting shape!

Very excited that I’ll get to see her very soon, by the way.  I will be in Salt Lake City for a work trip at the end of July.  I need some Mama-time! 

So, other health updates.  It seems it really was the virus – and the treatment of the virus – that was so hard on her body.  Turns out the medicines to treat the virus had a negative impact on her kidneys, which required more meds and IVs to regulate, AND they had a negative impact on all those healthy donor cells that are trying to rebuild.  So her peripheral blood hasn’t increased a great deal, but the hope is now that she’s off the virus medications that the cells will keep doing their thing.  The marrow was still 86% donor (which is good), and now we’ll wait for the marrow to keep pumping out the healthy cells. 

Her platelets were up, which is also a good sign.  That was one of the scarier moments when I was there during the preparatory chemo.  “Regular folks” have 100+ counts on platelets (not sure the units, sorry), which are the cells that help clotting.  If they get low, there’s risk of extensive bleeding, so bumps or bruises (or even sneezes) can be quite dangerous.  My Mom, being special, was closer to 20.  And when she got *really* special down in the single digits, that caused a little agita amongst the staff — and for my Mom when they wouldn’t let her out of the room for her walks.  The doctors always had a plan, but I wasn’t a fan of those low platelet counts.  I know there are a thousand other counts that are tested, tweaked and managed, but for some reason the platelets stand out for me - maybe because I understand it more than some of the others.

Oh, and last count, her platelets were up in the 60s!  Go, Mom!

Not sure when she’ll be back on the blog.  As I said, she’s still really weak and her focus needs to be on rest and recuperation.  I’m sure she’ll be back soon – and until then, I’ll stick around.  Thanks for the love and prayers,

Kerstin

P.S. I’m cheating a little on the photo — that was from my last trip, but I think it’s pretty AND you can see one of my Mom’s sassy wigs…

Welcome home!

I’d love to report that my Mom is at home resting and recuperating, but unfortunately, today marks three weeks for her current hospital stay. The fevers are getting less frequent and less severe, so it really does look like she could be going home soon. Fingers crossed for tomorrow!

On the positive side, they did allow her a short burst of freedom yesterday with a 4 hour pass. After 20 days of fluorescent lights and hospital air — as filtered and pure as said air may be — you can imagine she was very excited to get into the sunshine! I haven’t received the full after report, but she and Peter planned to find a nice spot with grass and flowers to relax for a bit, followed by dinner before heading back to the hospital. (And if I know Peter, I’d guess that dessert was also involved. Gourmandise? Baby bottoms, maybe? Just guessing…

Another positive development is that she is now allowed to drink water. How is that a positive development, you may ask? Well, for the first 2+ weeks, she was limited to only drinking electrolyte replacement drinks like Gatorade and juices. All day. Every day. I don’t fully understand the details, but apparently her internal chemistry is easily thrown off, including things like her sodium level, so water was verboten. If you know my Mom at all, you know she’s a big water drinker, particularly with the Sjogren’s Sydrome (dry mouth), so this was another annoyance that she really didn’t need. The dozens of pills she’s taking daily is already a chore, so not being allowed cool, fresh, clean water was a royal pain. She was up to a liter of water yesterday (which she very carefully rationed!), hopefully increasing incrementally as she gets closer to going home. Yet another reminder of the little things in life that we take for granted!

One final update — the results from the last bone marrow test are in, with mixed results. The donor bone marrow has engrafted well, and the doctors seem happy with the progress there. However, the peripheral blood levels — how much of the circulating blood is the donor blood — has not increased, and in fact decreased fairly substantially. There are many discussions about next steps and possible solutions, and hopefully we’ll have news in the upcoming days. There’s a transplant center in Seattle that has some of the world’s best and they’re consulting tomorrow. They may continue to wait and see – give the marrow more time to do its thing. Another option includes getting a transfusion from the original donor; I believe this would just be a blood transfusion, not necessarily more stem cells, but I don’t have all the info. In the meantime, my Mom can get HLA-matched transfusions if needed to keep her blood levels up. She received two units of red cell and one unit of platelets during this hospital stay.

So keep the loving thoughts and prayers heading her way. Thanks for checking in…I do pass along your comments, so feel free to leave greetings for her here!

All the best,
Kerstin

Hi all,
Kerstin here — standing in for my Mom again as she rests up in the hospital. She’s been in for 2 wks today…not quite her plan, but she seems to be accepting it with as much patience and grace as one can hope for. (Have I mentioned how much I’m in awe of her amazing attitude and strength? Very proud daughter here…) When she went in, she thought it would be a quick 2-3 day stay, but apparently her body had another plan!

As for current status, Mom’s still getting fevers, so it looks like she’ll have a few more days in the hospital. They continue to tweak medications — taking some away, increasing dose on others — until they figure out the cocktail that works best for now. It sounds like this may be par for the course as her body continues the transition of accepting the new marrow and letting the rest go. She still needs 48 hours fever-free before they’ll release her, so for now, she’s staying comfy on 8 East. The fevers are getting further apart, which is a great positive step — yesterday, her first one didn’t start until 8pm, when usually she would be on the second or third by then. So hopefully this is a trend and she’s well on her way to kicking these fevers.

Through the course of the tweaking, they also learned that the CMV (which went away but is now back) is in her stomach as well as her blood. They’re adding other medications to treat that, but it’s another layer to deal with.

So, no major updates to report, but Mom continues to rest and recuperate and let herself heal. Hopefully she’ll be able to do so in her own bed very soon! Thanks for all the thoughts and prayers…

- Kerstin

It’s Kerstin, Sandy’s daughter here. It’s been a while since she’s been able to post, so I offered to update the virtual world on her whereabouts.

On the very positive side, Mom’s new donor cells are doing what they’re supposed to — kicking out the old marrow and cancer cells. As of last week her marrow was 86% new donor cells and her peripheral blood was ~36% new donor cells…a great start and considered very positive by the docs. This means the donor cells are engrafting and producing new blood. As the old cells die out naturally, they’ll be replaced by her strong, new, cancer-free cells, so we should see both the marrow and blood percentages keep shifting toward more donor cells until she’s 100% transitioned to her new marrow. (On an “isn’t science amazing?” side note, this means my Mom currently has mixed blood types. Who knew that was even possible?!)

Oh, and did I mention that there are no cancer cells or blasts? Oh yeah! That’s the type of news I like to report.

She had another bone marrow test yesterday, so we’re looking forward to more positive news. Bone marrow tests are still a doozy for her, by the way. Not a fun experience for my dear Mama-san, but unfortunately a necessary part of the process. Thankfully, she seems to have sorted out the right relaxation/medication combo to make them tolerable.

On the less than positive side, Mom’s been in the hospital since last Sunday (June 6) fighting a series of infections and fevers. The medical team originally knew what it was (CMV) and treated it…but of course, my Mom has to be special and be one of the minority who gets fevers from the treatment! Since then, they’ve been changing medication, trying different protocols, and eventually removed her central line to try to control the infections. She now needs 48 hours fever-free before she can go home, which we’re hoping is soon. In the meantime, she’s in the best place she can be – and getting the best care possible. She’s pretty worn out, so not on the computer or up for visits, and thankfully is taking the time she needs to rest and heal.

I’m sure she’ll be back online shortly, but in the meantime, I wanted to keep her fans updated. I’ll pass along any messages, and feel free to contact me with questions.

Thanks to everyone for the continued love and support. It means the world to my Mom…and to the rest of us as well.

- Kerstin

P.S. She already shared it, but this is one of my all time favorite pics of my Mom, taken last Thanksgiving at Sea World. Ready to take on the roller coaster or whatever life throws her way! (Cody, you’re pretty cute too…)

Sorry for the big ‘break’ in my blog.  I’ve been dealing with low grade fever for 2 weeks and fatigue so bad, I could hardly stay awake.

We discovered I have a virus, CMV, which could cause my problems, and I am on the mend.  Still a little slow and so I’ll pick up the pace eventually.

Just one of the side effects of the transplant!  Doing IV therapy twice daily.  Nurse Peter has stepped up to the challenge and likes being involved!!