Dancin' in the Rain

Wasn’t feeling so emotionally good last week.  Cell counts going down and having to go on white cell stimulant shots to protect me from infection.  Then I heard that Kerstin cannot be a bone marrow donor for a second transplant due to my antibodies that are partying up a storm against her and everyone.  So,  I didn’t say or do much.

But a week has passed.  We are mostly waiting for my bone marrow to self kick start now that the disease is gone.  The donor transplant was successful in accomplishing that. Yea.   A second transplant within the sister / kid range is possible.  Kerstin is out.  Greg is being tested.  I bet antibodies will be an issue.   We will look at my sister’s DNA results and reevaluate her now that we are considering a haplo transplant ( 1/2 matched DNA) within the family.

And my counts have stabilized.  The white count medicine is helping and platelets stopped dropping.  It was the platelets that concern me the most because we are not doing anything but letting my body respond and they were doing great by themselves and then started to drop. So, today I feel good!

Physically I am getting stronger.  With my white cells increasing, I can get a life and attend social functions, especially if outside or small groups. attended a fun picnic and baby shower.  A movie is on the docket for Friday. The doctors and I agreed to ‘ get a life’ within reason.  I still avoid the crowds at church with lots of kids and soccer games ( go Real Salt Lake).

So, I am emotionally, physically and spiritually back on track.  My love to yu all.

With Kerstin here last week, I dedicated myself to increased walking in the morning.  I don’t like to get up and get ready, but once in the fresh cool morning air, I feel rejuvenated and energized.  This week, I’m starting 3 times around the block.  Not sure on that energized part because I need to rest when I get home.

No change in bone marrow status.  The Neupogen increases my WBC’s to fight infection.  We’ll see on Thursday if it kept the increase.  If not, more shots.

I work on keeping my physical, mental and spiritual stamina in the meantime.  I do what I can and leave the rest to the Lord.  It’s too much a burden to carry alone!

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.

Thanks to a  wonderful, considerate, capable daughter for keeping my blog alive.  I have not felt like looking at a computer, let alone doing a blog or email.  I had Peter clear my email at the beginning so hopefully I didn’t loose anything special from you.

The recuperation time has been more difficult than expected.  The virus wiped me out mentally, physically and emotionally.  I’ve been home 3 1/2 weeks and starting to regain my strength.  I was using a walker, boo.  I’m taking short walks outside in the cool mornings and my strength is growing.

About the transplant.  I go from lab work results to dr. visits with nervous anticipation.  The new donor bone marrow seems to have shut down, but there are great increases in the platelets and stable red blood count ( I’m still very anemic) and I haven’t needed transfusions in over 5 weeks. That is good.  Tests being run regularly.  The biggest concern is my white blood cell count.  They seem to be stagnant.  So I am taking antibiotics and Neupogen to stimulate my bone marrow and WBC count. Maybe it is taking a while to get the donor bone marrow to start again.  I may be one of those “late bloomers.”

I want to thank Kerstin for her help these past weeks.  I won’t be doing daily blog entries, but as things develop, I’ll keep you informed.  The doctors still have an option or 2 left, so we pursue these with great hope.

Kerstin comes to visit Sat. and we are both looking forward to the reunion!!

Love to you all and thanks for your support and prayers.

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!!

President Henry B. Eyring, First Counselor of the Church of Latter-day Saints says “The greatest joys and the greatest sorrows we experience are in family relationships.  The joys come from putting the welfare of others above our own. That is what love is.  And the sorrow comes primarily from selfishness, which is the absence of love.

The ideal God holds for us to form families in the way most likely to lead to happiness and away from sorrow. A man and a woman are to make sacred covenants ( vows) that will put the welfare and happiness of the other at the center of their lives.  Children are to be born into a family where the parents hold the needs of children equal to their own in importance.  And children are to love parents and each other.” (Ensign. Nov., 2009, p.70.)

I love my family . Peter and I have a blended family and we have managed to build loving relationships with them all.  There is sorrow, sometimes, but, I choose the gift of love and forgiving to maintain family stability.  They change me to be open to the Savior’s example.( Darlene lesson 5/23.2010)

Barr family in CA 12/2009

Barr's and Hein's in CA

Adult children in UT 12/26/09

Grandkids in UT 12/26/09 including almost grown up Jessey 15 and Jeremy 16!