In Nashville

Thank you all so much for your love, prayers and support. We are so sad to be writing to the blog again, but I guess that's life.

Wanda was officially served a shit sandwich this morning.

Doctors have confirmed from the bone marrow biopsy that she has AML (acute myeloid leukemia). They were very quick to say that the prognosis is not the prognosis for a relapse from a transplant, which would be pretty darn bad news. Instead, because she is 3.5 years out, the prognosis is the same as for a new leukemia patient. Which they think is good.  As soon as she stabilizes here, they would begin aggressive chemo to get the AML in to remission and then begin the stem cell transplant party again.  In the next few days they will determine whether the leukemia originated in the remnants of her blood or from her donor blood. This does not change anything except whether or not we need a new donor. If the AML leukemia originated in her blood, they will use the same donor. If it originated in his blood, then we will be on the hunt for a new donor.

This news was hard to receive. The pressure in mom's brain has made that even harder. She understood (mostly) all that her dr presented us, but she was not able to articulate questions or reactions.

Which leads me to the hurdles she has between now and chemo. Unfortunately, those hurdles feel very significant right now.

They have not been able to 100% address the issue of her bleeding. The coagulant is working but not perfectly. This means that they will not be able to perform surgery to relieve pressure in her brain even if they wanted to. It seems like there is a lot of blood in her brain, and what we are praying for right now is that we do not have a situation soon where the neurologists need to perform surgery and the hematologists don't want to.

So we have two prayer requests today. First, that her bleeding in the head has stopped so that we aren't faced with the potential of having to decide whether or not to risk potentially necessary brain surgery at a time when we are unsure that we can control bleeding.

And second, that she is not losing heart. It is hard to know, and that terrifies me. She has (short) periods of alertness followed by extreme tiredness and general non-responsiveness. In the alert periods she can often muster a smile. We all know she is a fighter, but I can't help but worry.

Case will be joining us here in Nashville in the morning. We tried to make mom choose which of us (me, Kit or Dad) should go with her to get the most recent CT scan, and she said Case.

Lots of love-

A Bump in the Road

Case here. It's been quite a while since any of us have written an update on Wanda's progress. This is mainly because she'd mostly returned to her former, spunky self. Sophie and I just had our first baby, Patrick, in February and we were able to spend a lot of time in Chattanooga. Since we were there, Kit, Callie, Mike & Davis all came down and our whole family was able to spend a weekend together at the beginning of April. The weather was great and we had a wonderful time.

Sophie, Kit, Wanda, and Patrick

It's been a few weeks since then, and we've all returned to our respective homes (for Sophie and I, this means Tel Aviv). Wanda was planning on coming to Israel for three weeks starting next week in order to take care of Patrick during the day. Unfortunately, we seem to have hit a sizable bump in the road.

Wanda hadn't been feeling well the past few days, with a cough, a headache, a toothache, and pain in her shin. She went to her doctor, who took blood to perform a standard CBC and sent her home with some medication for allergies. Things took a turn for the worse on Tuesday night, when Wanda started vomiting and generally feeling really terrible. Pat & Wanda decided to go to the ER at Erlanger on Wednesday morning when they saw that her leg was very swollen and she was in immense pain.

Erlanger admitted her and began trying to figure out what was causing the extreme swelling, starting with an ultrasound to try to rule out a blood clot (well, deep vein thrombosis or DVT). They also did a CBC and found that she was anemic, had low white blood cell counts, and was dangerously low on platelets, so they gave her a blood transfusion. They did an MRI on her leg which confirmed that there really weren't any clots or tissue damage in the leg. They also did a CT scan which found that she had excess blood in the brain, so they scheduled an angiogram to rule out an aneurysm. Finally, they wanted to get a bone marrow biopsy and, in doing so, they found that the wound was taking a long time to close up - so, something was wrong. I believe it was this that led the hematologist at Erlanger to run some more tests which showed that mom had a coagulation factor inhibitor - basically, her body was producing something that was preventing her blood from coagulating - thus, the bleeding wasn't going to stop quickly. This has led them to give her a "Novo 7" shot(?) which helps the blood coagulate.

Through all of this, they have wanted to transport her to Vanderbilt, where she will get the best care for her situation - Vanderbilt was where she had the stem cell transplant done. Unfortunately, each one of these problems has meant that the doctors have been hesitant to transport her since she wasn't stable. With the addition of the Novo 7 and an angiogram with a negative aneurysm result, they have now determined that she is stable and is ok to be transported to Vanderbilt by helicopter. Callie and Pat are waiting with her and will travel to Nashville once she gets on the helicopter.

So - that's where we are. Callie, Pat, and Kit will be in Nashville with Wanda tonight. Mom was talking (a bit) and forming coherent sentences, which is an improvement from earlier, but she has many obstacles in front of her. There is a strong possibility that this is MDS or something in a similar vein, but we don't know for sure and won't know until the biopsy results come back. I do know that my mom is an amazingly strong woman, always has a great, positive attitude, and has some of the best friends out there. Your support would be greatly appreciated while we figure out what's up. Love to all of you!

Dog Days of Summer

Case tells me that it has been a long time since I have posted on the blog.  Did you assume that life was just uneventful?  Did you think maybe I had expired and you just hadn't heard?  If your answer to the first question was YES, you are right!  Here's an update for those of you I don't see around town!

Every week since I have been home from Nashville, I have observed tiny steps of progress toward becoming my old self again.  Some examples:

1. I just finished six weeks of therapeutic massage.  That, combined with returning to workouts with Karla, the trusty exercise guru, and the steroids that I began taking several weeks ago (for GVHD), has resulted in much less arm pain and better mobility.
2. The doctors are having me taper the medicines.  I am off the Celcept -- no problemo.  Then we started on the GenGraf.  That is when GVHD reared it's ugly head.  Steroid medication is the treatment of choice for GVHD.  It works, with the added benefit of helping my arm muscles relax and feel better.  The negative it that I'm starving all the time and gaining weight.  Ugh!
3. I am beginning to have more energy.  I finally put the rest of the stuff away from the Nashville apt.  I even had Pat help me clean out our"nothing" room, which lately has been our "stuff it" room.  I'm getting up earlier, not napping as much, and sitting around less.
4. I still cannot drive due to continued medications.  This is a real bummer.  I really thought I would be driving by now, but alas.  Pat and my friends have been great about carting me around, but enough is enough.  Hopefully, I'll be driving in another month or so.  It all depends on GVHD as I continue to taper off the medicines.
5. I have been out in larger groups lately, but it is summer time, we've been outdoors, and the groups have been all adults.  I don't know what restrictions I will have once it cools off, we go inside, and cold and flu season starts.  I know that the doctors are not ready to release me to return to school this fall---maybe after the holidays.  Who knows?

That's all there is to report.  I haven't been anywhere or done very much, but I am blessed by feeling just a little more like myself each day.  I go back to  Nashville monthly, and this Fri is my August appointment.  I am hopeful for a good report!

To all you my friends that are starting a new school year I sent special thoughts.  It is very weird to not be focused on a new school year right now. Guess I could read some of those professional books on my shelf...

Love you all,
Wanda

April

May

Mid July

Home at last

You might have noticed that the long awaited Day 100 came and went without much hoopla from me.  Case blogged a week or so ago to inform my special friends of the "bump" that came up on Day 95 with respect to my white blood cell counts. That week reminded me of the Limbo--how low can you go? Amazingly, as of last Wednesday, those unpredictable counts were back in the normal zone.  I will have them checked here in
Chattanooga tomorrow.  Here's hoping they are still at an acceptable level!

No matter, the acute care SCT clinic has dismissed me to the long term clinic.  I have an appointment with Dr. Savani, my personal favorite member of the SCT team, this Friday in Nashville, of course.  If all is well, I may not have to make the Nashville trek for a couple of weeks.  That WOULD be nice.  Meanwhile, I am still concentrating on drinking enough liquids and building up my energy, which seems to be at an all-time low.  I think I will be more and more active as the weather warms and I adjust to a new routine with different possibilities.

Today was the first day since Thanksgiving that I have spent the entire day by myself.  It might get lonely since I still cannot drive, so I would welcome phone calls, visits, or a walking companion on nice days.  Just give me a call! This process is a long one.  Thanks to all of my friends who have hung in there with me with their prayers and good wishes.  Keep 'em coming. I do see a light but the fight isn't over yet!  It's great to be home!!

Bump

Case here. Today is day 98, two days before the day 100 that has been the 'light at the end of the tunnel.' Just when we thought we could make it through the 100 days being as boring as possible, we've hit a bump. Mom's white blood cell count had been hovering around the 3.5 range, which is low, but considerably better than where she was pre-transplant. The doctors had not been concerned though, because there were no other issues and it was holding steady. Starting with the lab results last Friday, her white blood cell count has dropped to it's current level of 0.9. This, as you would imagine, has been cause for concern. The clinic ran a battery of tests and sent off a blood culture to see if they could figure out what was causing the drop. No culprit has popped up, so we're stuck trying to figure out what's wrong, and hoping that it will improve. Mom also received the results from her latest bone marrow biopsy which still says that she's MDS free, but made mention of the biopsy being "mildy hypo cellular," something that doesn't seem to concern the doctors, but has added to mom's anxiety. As you can imagine, mom has been bummed this week, even though the doctors do not seem to be that concerned.

Please send your positive thoughts and prayers her way!

Looking Back

These last 85 days (plus 10 pre-SCT days = 95 full days of treatment) have added a plethora of knowledge and fresh observations to my life experience, such as

• Yes, Denise, American Idol is fun (Did you hear ST use that big word?).
• Wind and wigs are a scary combination.  I almost lost my hair all over again in a strong and chilly wind yesterday.
• You can learn a lot by sharing life stories with a plethora of fabulous friends, especially when there isn't much else to do.
• Numbers can be confusing,  They want magnesium levels to be high and creatinine levels to be low.  How confusing!  Why can't they just pick high or low and make it easier on everyone.
• BORING IS GOOD.  Now this one has been the hardest to really believe.  But that is a direct quote from my doctor, so it must be true.  Seriously, boring IS good in the world of stem cell transplants.  My life has been a little dull of late by most people's standards, but that's okay.  In this case boring means things are going very well indeed.

Two more weeks until they begin to loosen my leash.  I hope many of you will keep me from getting bored by stopping by to chat once I'm home for good.  That will be after the March winds, so maybe I will be able to hold onto the hair!

Less than 25 days and counting!

Now this IS ------ THE FINAL COUNTDOWN! And I am beginning to think about life beyond my Nashville apartment, which is kind of scary since with the 100 day celebration will come the reality that I might have to start taking care of myself, Pat, and my normal life routines sooner than I would like! You see, reaching Day 100 does not mean I miraculously will feel myself and will be at 100% of my energetic old self (my caretakers think I'm about at 25% of my normal energy, with somedays less). But after Day 100, I will be at home, thank goodness, with bi-weekly trips to Vanderbilt. I won't be able to drive due to continuing meds, but I will be tapering some of the medications, which might help with energy and feeling good. And I will be able to visit with healthy friends in small groups - that will be the best part!

Meanwhile, it's more of the same. Getting down enough fluids continues to be challenging for me and my caretakers have to be on me constantly. Maybe warmer weather will make it easier. I am constantly reminded of how lucky I have been during this process - it absolutely could have been a devastating experience, so my little aches and pains seem trivial. I will say, however, I do look forward to sunnier days ahead!