Donating Blood

Since this crazy saga began back in April, Wanda (mom) has received countless numbers of blood transfusions both in Nashville as well as in Chattanooga. Well, to be clear, I'm sure it's not that many - it can be counted - but, still - it's a good number. She goes once or twice a week to have a complete blood count (CBC) done and, depending on what her numbers are, the doctors decide to give her either packed red blood cells, platelets, or both. The packed red blood cells boost her hemoglobin, allowing her blood to carry more oxygen throughout her body. The platelets allow her blood to clot when necessary. On the days when she receives a transfusion, she just gets to sit in a chair and pass the time either in a private room or with 3 of her not-so-closest (random) friends.

My cousin Mandi recognized mom's thirst for blood and had a great idea to surprise mom by getting people to donate blood for her 65th birthday. If you are signed up to receive email updates from the blog, you should have received an email about it. Anyway, I'm happy to say that a good number of you donated (blood or cash) and sent pictures and we made a collage of all the pics we could find (sorry if any were left off!). One of mom's friends even made it into the local newscast while donating.

Personally, I hadn't donated blood since college, so I approached the donation with trepidation. However, it turned out to be relatively painless and very quick (less than 25 minutes) and I was left wondering why I hadn't been more giving of my blood in the past. It's satisfying to know that a simple donation of blood can go and keep someone like my mom healthy. So - go, donate!

Wanda's Warriors

All roads lead to . . .

What exciting weeks we have had!  A visit from Callie and Davis, my fun birthday, and then Case, Sophie, and Patrick invaded our lives two weeks ago!  They arrived on September 19 (a chemo week), and I got to go to the hospital from the 23rd-26th. I had a neutropenic fever, a common event with low white cell counts. The silver lining (always on the lookout for one) about that was the doctors gave me lots of antibiotics so that I was able to make the trip to Boston from the 27th-Oct. 1 with no problems. If you wear a mask and act slightly informed, Delta can be really nice to you . . . just saying!
The reason for the trip to Boston was an appointment with Dr. Soiffer at Dana Faber Cancer Center. I was dreading it, expecting more grim news. He could sense that we already knew the grim news, so Dr. Stiffer focused on hopeful news. The bottom line, however, is not what I wanted to hear--that any path to "healing" involves another stem cell transplant or a leukocyte infusion. Either would involve revisiting my original donor. He gave me some reasons why the transplant had relapsed and his ideas to remedy the possibility if I chose a second procedure.
He had several trials that he thought might be helpful in getting me into remission, which is necessary for either procedure.  He was helpful and suggested plans of action, but there are many "ifs" to be dealt with, like
--Will another month or two of Dacogen put me into remission????
--When do I give up on Dacogen and perhaps join a trial group?
--If no lesser remedy works, am I willing to do the 7-3 chemo to get me into remission?
--If I have another stem cell transplant, would I go back to Vandy?  Boston? Atlanta?

Meanwhile, I'm feeling pretty good and looking forward to all the family being here for Kit's wedding October 18. On October 20, the reprieve is over and it's time for another round of dacogen.
Thanks for all the positive thoughts you send our way. We feel them, and we know you're there with us hoping for maybe just a tiny miracle.

Made it to Medicare

Yes, on September 8 I celebrated my 65th birthday. I made it to Medicare!
What a day it was!  First I had a doctor's appointment where I got the results of the bone marrow biopsy.  Blasts were down, which is slightly promising.  They definitely don't call it remission, but it's better than blasts going up or staying the same. Then Dr. Daniel postponed the next round of chemo until this week.  Was that his birthday present to me?
"Thank you's" go to many Wanda's Warriors.  I got sooo many cards and sooo many emails that day. Turning 65 wasn't too bad. I send a special thank you to those of you who donated blood or sent donations to Blood Assurance. I have had fun with all the pictures you sent. What a surprise!  My niece Mandi is just full of fun ideas!  I love you all!
I will say the chemo is cumulative as far as making me tired.  I haven't been sick though, so I shall not complain, I shall not complain, I shall not . . .
Callie and Davis were here last week. I forgot to get her to do a post. Maybe I can coerce Case into writing a blog during the month that he, Sophie, and Patrick will be here on home leave.  Maybe after the trip to Dana Faber in late September there will be something encouraging to report.

Thanksgiving in August

Another blog from the one who needs a ghost writer?????
Yes indeed!!!!!
It's all because of the dreams.   I dream about thank you notes and compose them in my subconscious. I remember the adjectives I used to describe a delicious "lite" pie or a scrumptious roast.  I remember the gratitude I expressed to a friend  who spent the day with me  in the infusion room while I get a transfusion (although if you like to chat, those stark rooms and lots of waiting certainly provides time to catch up on a great variety of topics).   The problem with these "mental" notes is that for many of them, I cannot remember looking up addresses.  That's where the dream theory comes in. Did I really write the note or was it a dream?  Is this a result of chemo brain, or is it just my random personality asserting itself?  No matter!  I just want all the Warriors to know that whether you received a tangible note or if you where lucky enough to get a "dreamy" one (They were sooo nice!), my family and I appreciate you.  We are going to back off meals so we can use up some things in the freezer, although meal train will be reactivated should the status quo change.  I will still be calling folks to drive me to appts. Let me know if you'd like to help in that way. I love folks stopping by to visit, and if you don't donate blood, you might consider it. I am so grateful for all the support I have received from so many people. It has been a dream come true.  Knowing so many folks care is truly the "silver lining" in the
clouds that have hovered since April. Wanda's Warriors are the best!

The Beat Goes On

Is it too obvious that I love to be taken care of when I'm less than 100%?  It's true. As I spend hours in isolation from malls, grocery stores, church gatherings, parties, and Walmart, one would think I would use that isolation to communicate in a germ-free, email kind of way. Wrong! Instead I find myself wishing some member of my family would take the time to update my friends on the continuing health saga that dictates my current activities. After all, they only have children, spouses, jobs, homes and LIFE going on around them.  Can you believe there have been no sibling arguments about who GETS to write an updated post?

Pat used to quote some comic who said "Sometimes I sits and thinks and sometimes I just sits."  Guess I'll sit and think about what has happened since the last update!

Not much. Not much has changed. Get chemo for five days running (takes only a couple of hours). Blood counts play Limbo--how low can you go!  Week after chemo my WBC is so low it scares pathologists who don't know me. This week is the week after. Friends visit or I may visit them, but I don't go to public places. I usually have to get transfusions for platelets and red blood cells--I get platelets much more often than red cells. I had both today. Getting blood products takes a long time, and God bless those who give blood generously for people like me.

Next week, I may creep above 0% for the smaller white blood cells. Right now, there are none.  By the last week in the cycle, my numbers begin to rebound just in time to knock 'me down again. It's like bowling with Davis. I just about have those pins lined up and looking good and BLAM! Wish the reset button worked better.

Can you see why I don't write this stuff?  Routine. Cyclical. Predictable.

There may be a twist come Labor Day. That is the week I would normally have the next round of chemo. This time he's pushing it back a week (Sept 8, my 65th birthday) so we can do a bone marrow biopsy (Sept 3) to see what, if any, effect this chemo is having. They will also take tissue to analyze for genetic mutations that might be addressed by oral medications.  This is the test they tried in July to no success because I didn't have enough white blood cells to study. Put me to sleep, and you can take all you want! Callie and Davis will come for a week-long visit that week—they try to catch me when I am feeling my best!

After we get these results, there will be options to consider.  I am planning to do a consultation with a leukemia center in mid to late Sept, probably Dana Faber Center which is associated with Harvard. They win because it is in Boston, and I’ll get to see Davis! (and Callie and Mike)

Nothing dramatic, I hope, will happen until after the very small but very special wedding of Kit and her fiancé, Demian Kato on Oct. 18. This wedding was envisioned quite differently from what is evolving. Destination wedding--not Chattanooga. 2015, not 2014. Small but maybe not as small as it is now planned to be.  It just seems right to do it with family now in the case that something (I’m looking at you leukemia) compromise my ability to be a part of the wedding.

Round Three and Still Standing

A lot has happened since Callie last wrote at the end of Wanda's 2nd round of chemo. The week after the chemo is the roughest, since that's when her blood counts are at their lowest - and boy were they low! A typical person has a white blood cell count over 4.5 and hers dipped to 0.2 - lower than than they have ever been (even during the stem cell transplant). Therefore, she ended up getting a fever that never went above 100.9, but this caused her to spend 4 days in the hospital getting a drip of antibiotics and blood products. Although this was done out of an abundance of caution, it definitely got her attention.

In the past month, mom has been able to see Callie, Kit, and Case. Callie was here for the 2nd round of chemo and Kit came 2 weeks after, after mom had been in the hospital. Now I (Case) am here and have been here for a week. We also had mom's college roommate, Trish, here for a few days this week. It's fun to have a reason to spend quality time with family and friends - a silver lining for which to be thankful.

Mom and dad's house was struck by lightning a few weeks ago. This caused all sorts of weird issues like a dead washing machine, dead router, non-functional stereo receiver, and, to top it off, a water leak in the basement. I guess someone decided that we just needed a bit more excitement in our lives! On the plus side, mom and dad now have a beautiful new washer/dryer set... and the house didn't burn down.

This past week was her third round of chemo. Her blood counts at the beginning of the week were hopeful - her white blood cell count was at 1.9 - and the doctor commented that he thought that she was doing better than he thought she would be doing at this point (of course, who knows what that really means since it's all relative). They also took an extra vial of blood to do a molecular panel, which will hopefully show that there is a specific gene causing the leukemia and could allow the doctors to give a targeted drug rather than the current broad-scope chemo. We should know the outcome of this in a couple weeks.

After mom's scare following the 2nd round of chemo, she is going to be extra, extra careful this coming week to make sure that she doesn't take any unnecessary risks. This will mean extra care for the food she eats, extra care for hand washing, and especially extra care for getting plenty of sleep.

OK - enough with all the talk about treatment and sickness. I'm sure what you really want to know is what is Wanda like these days. She is her normal, fun, spunky self, but she has a bit of what I'll call the "Taintor edge." She's a bit quicker to get agitated than usual, but who can really blame her? I suggested therapy, but she told me "if you think I'm going to spend my last days trying to make other people happy, then you're crazy!" This was said tongue-in-cheek, of course - you see, I told you she was still spunky.

Finally - I'd like to thank all of you for sending mom your thoughts and prayers and for supporting her and us in this challenging situation. Mom & dad have appreciated the delicious dinners that people have provided and I know that mom has enjoyed the cards and conversation. I'm sure she would enjoy going for a short stroll around Mountain Brook Circle in the mornings or an afternoon visit - if you're interested, give her a call.

Is Pat having fun?

The Grind

After another round of chemo, Mom is needing more transfusions (as expected) and is lying low with her very depleted immune system. Her spirits are good, and she has a number of needlework and reading type projects to keep her busy.

Many of you have asked her or me how you might be able to help, so we have set up a MealTrain calendar. Up to this point, she has been coordinating with friends, but an online sign up seems like an easy way to help if you can/want. 

To sign up, follow this link http://www.mealtrain.com?id=mmu8tlctd31t and create an account for MealTrain. (I believe there is also an option to sign in with your Facebook account) Once you create the account or sign in, you will see a list of dates (typically a Monday and Thursday or Friday) that you can choose from. Click "Book this Date" if there is a day that works for you.

Her food restrictions limit her intake of fresh, uncooked vegetables. If you wanted to bring something like a salad, it would be best to simply bring the ingredients so that she can make sure she follows her doctor's orders of washing, washing again, and washing again any raw vegetables. Cooked/steamed are safe and preferable.

She also needs rides to the clinic every few days, so if you find yourself planning a trip to Memorial or that area in the coming weeks, just drop her a line. 

Thanks again for all the offers to help, no pressure. Happy thoughts or prayers will do of course! 

Many thanks to each of you.

Callie

Words from Wanda

It's been a busy two weeks since I got home. Visiting the doctor, checking blood, getting 

platelets . . .  That is the "not so fun" part of this adventure.  The fun part is receiving your cards and notes of good wishes.  I couldn't help it--I put them up with clothespins around the den.  Getting to look at them and re-read your notes has made me feel surrounded by love.  Thanks to all of you for your support.

The other fun thing is the wonderful conversations I have had with many friends.  Yes, I need meals and drivers, but the conversations, both informational and philosophical, have sustained me.  

  

Last summer I was able to get Davis for a week for summer camp at GranT's house--just Poppy, Davis, and me.  While at Vanderbilt, I told Callie that if I got to go home, she needed to bring Davis for a Summer Camp 2014. They got here last Tuesday and leave tomorrow.  Not the same, but as close as we could get considering the circumstances.  The "half full" reality was that it was great getting to spend quality time with Callie when Davis was napping or sleeping.  Gray clouds . . . silver linings.

At camp we have played hard and rested hard.  We enjoyed a safari at Citico Wildlife Wilderness near Sweetwater with some other grandbabies and grandmothers.

We took him on his first boat ride down the Tennessee River.  He liked the boat, but he LOVED the golf cart he got to ride at the end.  

He loved the rails at the Chattanooga Valley Railroad Museum so much last time that we did it again this year.

He's gone swimming, played in the sprinkler, walked the block, made new friends his age, met many of GranT's friends, and had brunch with Callie's long time friend, Laura Dugan. Sunday everyone but Poppy had a two hour nap. When Callie told Davis that they were going home tomorrow he said, "I'm going to miss everyone at GranT's house. But we can play with them when we come back to GranT's house later."

It has been wonderful to have Davis here, but it's also hard to not be able to chase him around as much as I'd like to.  I'm hopeful for Summer Camp 2015!

Today I started my second round of dacogen, and as the chemo began to drip, lightning struck our house. I'm not sure yet if it is a good sign or a bad sign of things to come, but I'm hoping a good one. The flash and noise terrified Callie, who was in the house, and it fried a bunch of semi-important appliances (AC, washing machine, garage door openers, anything EPB, and we have a hole in the drywall of the utility room where we had to stop a leak that was also a result of the "hit").  So far the house is still standing--no fires, no one hurt.  I'm looking for the silver lining in this event--maybe it'll be a new washing machine (Mine is at least 30 years old!).

I am kind of in limbo right now, which is why the posts are less frequent.  I'm stable and able to do many things with care.  I don't know what we would have done without help with meals.  Pat is stretched to the max.  I appreciate that meal planning has helped not put either of us over the edge. 

Please know that I think of you all daily and thank you for all your love, help and support.

Home!

Just wanted to send an update that the team at Vanderbilt sent Mom home to Chattanooga to continue outpatient treatment there. We are all thrilled at this development, and she is glad to be in "her world" again.

She'll continue to have her blood checked every other day and have platelet infusions as needed there with her oncologist in Chattanooga. And she will begin a second round of the chemotherapy (dacogen) starting on June 9th. They anticipate three or four rounds (one per month) before they can tell if it is going to put the leukemia in to remission.

Don't worry if you don't see her around--she's been warned off many of her favorite things because of the precariousness of her health (no driving, subathing, swimming, having a glass of wine, going anywhere in public without a mask...).

Thank you again for all your thoughts and prayers. We are praying now that she will stay healthy to give this dacogen a chance to work.

Leaving the Hospital

We are leaving the hospital today!  We've been here 24 days and are happy to move on to the next phase of what will hopefully continue to be a recovery.

I remember realizing three weeks ago that we were going to be lucky to get out of this mess with just leukemia. That was such a bleak realization then that I remember exactly where I was when I thought about that. And though it is still a grim prognosis (and we have the added complication of hemophilia), I feel so blessed that Mom got her mind back.

Knowing that she is mentally and physically present to take on this fight gives me much more hope than we had two weeks ago.

We will be discharged today to a suite hotel here in Nashville. Mom will come in every day this week to be evaluated at the stem cell clinic and to receive transfusions and the hemophilia treatments (rituxan, cytoxin) as needed. On Friday the doctors will decide whether to keep her up in Nashville longer, or to discharge her to the care of her Chattanooga doctors. She would still undergo lots of blood checks, transfusions and treatment there, but at least she would be home.

They will decide down the road whether they want her to come back up for the next round of dacogen, or if that would happen in Chattanooga.

So this week, we are praying that she continues to gain strength and that the doctors make the right decision for her. I know we hope that is Chattanooga, but we'll understand if they want to keep her up here.

Thank you for your love and support. I can't wait for her to wake up from her nap so I can give her this new stack of cards. She has talked a lot about how many times she has read each one (when we get bored we go through them all on the wall). So thank you, thank you.

Jail Break

Mom got to bust out of the hospital today. We walked down to Hillsboro Village to have lunch at Provence, where either we miraculously still had money from a gift card from 3.5 years ago (thanks Margha!) or the woman didn't know what she was doing, got frustrated and gave us the food for free. I knew better than to push my luck by inquiring about the remaining balance.

I think the doctors may have been rewarding her for using the exercise room they have here in the immunosuppression wing.

She is ready to get the heck out of dodge. 

It sounds like early next week they may be ready to discharge her to an outpatient situation up here in Nashville. They are not comfortable with her leaving entirely, but I think the set up will be similar to what she did when she was here for the transplant--live in an apartment, come to the clinic every day or two for tests/platelets/chemo as needed.

This type of arrangement would likely last until after her next round of chemo, which I think will wrap up in early to mid June. 

They haven't dealt with this hemophilia/leukemia before and want to be sure that they know as soon as possible if a bleed develops. The numbers weren't quite as good this week as last in regards to bleeding, but the hematologist still says he is happy, so we're sticking with that. 

Today is the fifth and final day of this first round of chemo. The sun is shining.  Mom got to go outside for the first time in more than three weeks. It's a pretty darn good day.

A Wall of Cards

Mom moved out of the ICU and in to a room on the oncology floor and is now in room 10601. Due to the incredible amount of mail Mom has received, the mail room has so far had no trouble recognizing her name and forwarding mail.

She and her friend Marty started decorating and ran out of tape, so I brought more with me today and finished covering the portion of the room that we are allowed to use tape on. We got at least half the cards up, and she has enjoyed re-reading them all as we pulled them out of the bag to put them up.

So thank you!

She's had two of the five days of chemotherapy, and so far so good. She's walking without a walker and her speech is sounding incredibly normal (both in cadence and in amount of conversation).

We've got a good team here, and we hope that things continue to be uneventful.

Many hugs,

Callie

Wonder Woman, Indeed

Callie here!

Mom appears to be living up to her snuggie image. 

Good reports from hematology (her factor 8 counts are up after one week of rituxan). 

Progress on the speech therapy--though she certainly has word retrieval problems, she is having fewer, and her natural speech pattern is coming back as she is getting better and better at coming up with different words to get her point across. And she just got back from a lap around the ICU with a walker.

The stem cell transplant/oncology team is heartened by her returning strength and improving blood work. 

The plan now is to start up the dacogen (chemo light) on Monday or Tuesday, assuming things continue to trend upward. She'll get five days of treatment and then have the rest of the month off before another round of dacogen in June.

Next Friday or Saturday she will hit the benchmark of 21 days that the neurologists want to see before discharge. The stem cell team thinks that sometime the week of the 19th will be the appropriate time to discharge for inpatient or home health physical therapy and the continuation of monitoring, transfusions, dacogen, etc as necessary.

Thank you all again for all your thoughts, prayers, cards and videos. We have gotten so many compliments on the crane mobile that now mom wants me to get origami paper to start making her more cranes (I am not sold on this idea).  Dad just got up here with the portable DVD player, and we have three seasons of Glee to look forward to (thanks Trish!). The nurses are VERY impressed with the number of cards that mom continues to receive. She looks forward to the mail delivery each day.

We are feeling hopeful that the dacogen will put the leukemia in remission, but mindful that the success rates are not wonderful. Mom just wants to be able to be home in Chattanooga (to see many of you), and every day that seems more and more likely.

Crane mobile from friends in Denver!

Goldilocks

Callie here.

I thought I'd write to say hello and let you know how things are going high atop the Critical Care Tower.

We've been in wait and see mode the past few days. Kit and Demian left on Saturday, and Mike and Davis left this morning.

It's been a bit up and a bit down emotionally, but we ended today on an up note. There was a hot shower, a real coke (what a waste diet coke is...), a hair dryer, a curling iron and beach music. And now there are rumors she is going to start one of her beloved crossword puzzles soon.

It is times like these that make it hard to accept this prognosis.

We have a few benchmarks to meet before deciding the course of treatment.

Tuesday or Wednesday, the neurology dept will be analyzing a new CT scan to see if they think we are mostly clear of the danger of vasospasms and various other neurological issues. It will be the neuro dept that decides how long we get to hang out in this lovely room.

Wednesday, the hematology team will be checking to see if the treatment (Rituxan) they are giving to help mitigate the coagulant inhibitor is having any effect yet. Though they don't expect to see results in just one week, they are nonetheless hopeful. Regardless, mom will get another infusion of Rituxan on Wednesday.

Also Wednesday, the oncology team will be conferring with hematology to try to decide what timing makes sense.

Like Goldilocks, it's all about having things 'just right' here. We don't want to wait too long to begin one of the chemotherapy options, but we don't want to start too soon and risk bleeding.

Mom continues to get stronger, and we've taken a few trips out to the atrium outside the ICU ward. Obviously she is the best dressed patient.

Atrium swimsuit and knee sock competition

Mom and Davis

The Gangs's All Here

Almost everyone from our family is here, albeit for a short bit. Callie, Mike, and Davis joined us on Wednesday afternoon and Demian joined us last night. Sophie & Patrick are in Tel Aviv and I am sitting in the airport in Nashville, about to head back to see them.

I think I speak for all of us when we say that, under the circumstances, our time with mom has been great. Her ability to express her thoughts has been improving. When I first saw her, the nurses would ask her to squeeze their hands and when she squeezed with her right hand, the nurse would smile and say "Great!" and crack a forced smile, for the squeeze was but a faint twitch. Now it's a legitimate squeeze and hopefully her fine motor control will follow shortly. They did a CTA of her head this morning and we're confident that it will show that the bleeding in her brain has subsided.

She has many bruises on her body from the bleeding caused by hemophilia, and those have been slowly fading away. We're pretty lucky to be at Vanderbilt for this, because hemophilia is a pretty rare disease that is usually congenital - it's more rare to develop it as an adult, but not unheard of - and Vanderbilt has doctors who specialize in it. That said, the doctor tells us that she's never seen nor read about a case of someone having hemophilia at the same time as having leukemia. "It's crazy," as mom would say.

Aside from that, not much else has changed. One day we feel pretty optimistic, one day it's more - not pessimistic - but... feeling the gravity of the situation. Certainly the best part of the day is the morning. This is when all the doctors come by and mom gets to show off how she's been improving on the hemophilia and neurological standpoints. We're still waiting to try to get the hemophilia under control before we start to talk seriously about the next steps. Hopefully this will be under control next week, but it could take longer - time will tell.

Morning is also the time when mom gets her mail delivered - and boy is she getting some mail! It really is quite amazing and humbling to me to see all the mail. We've received mail & food from close friends of her as well as long lost friends. We've also received mail from many of friends of us kids, which is truly amazing. We've also been reading emails to her. I've learned so much about my mom just from reading how this or that person knows her. For instance, I never knew that she taught on Lookout Mountain at some point before I was born. Thanks for your continued support!

Wanda Woman - a special delivery from my cousin Mandi!

mail!

How Weird Weird Can Be

Case here. The optimism of two days ago has largely passed, and reality is beginning to set in. I think this is true both for Wanda, our family, as well as the doctors. On Monday, we were told that chemo was probably the best option and generally the atmosphere of the discussion was very upbeat and hopeful. However, the Vanderbilt doctors still needed to look at the results of the bone marrow biopsy and still needed to confer with the neurologist (for head bleeding) and hematologist (for the hemophilia - factor viii inhibitor antibody production). I think these discussions led to a much more stark reality.

From my perspective, the biggest problem is that the biopsy slides seem to show that this AML is caused by a progression from MDS - so, related to her previous disease. Outcomes of people who have MDS-turned-AML are not good. Here's a quick recap of the numbers they cited us - note that these numbers are for a typical MDS-to-AML patient:

• overall, there's a less than 5% chance of a big picture cure - this is after chemo, remission, lymphocyte infusion, and transplant - lots of hurdles
• left untreated, she probably has a few weeks - could be more, could be less
• death from complications due to chemotherapy in the 4 weeks after starting chemo are somewhere around 10%
• with just chemo, it's expected that the AML would return within 6 months - so the good effects of remission are relatively short-lived

Of course, right now, mom is not a typical patient. She has an active bleed in her head and leg. She has hemophilia caused by the production of factor viii inhibitor antibodies. They would guess that the the these two problems would give her something like a 30% (rather than 10%) chance of having complications from chemo in the first 4 weeks, but it's anyone's guess. She is not typical patient, but instead "challenging" and "unique" (after all, she is still Wanda ;-))

So - what's next? Initially, we thought that we were going to have to choose heavy (induction) chemo or no chemo this morning (Wednesday), but the plan has changed. After consulting with each other, the doctors think the best course of action is to get the hemophilia under control by itself, and then start to work on the AML. In order to do this, they're going to use a common outpatient chemotherapy drug that is usually used to treat lymphoma (Rituxan). The hope is that this will knock out the production of the factor viii inhibitor antibodies and that will then lead to her bleeds being sealed up and healed. Of course, through all of this she will continue to get a good amount of platelet and red blood transfusions. They think they'll wait about 7-10 days after this chemo to ask questions about where we're going next. They see this chemo as relatively low-risk, so mom signed off on it without much thought.

It's anybody's guess as to what treatment Wanda will choose next, but it seems that our conversations are guided by how Wanda wants to spend her time and what the effects of treatment are on quality of life. We all know that Wanda is all about living the good life, and we trust her decisions will be made in a way that supports how she defines Life to be. As the days pass, she has become more lucid and more understandable as the effects of the pressure in the brain start to subside. We've had reasonable conversations with her - you just have to understand that only about 75% of the words she uses are the words she intends. Sometimes she gets stuck on a word and you have to start asking questions to try to figure out what word she is intending to say. While it is frustrating, she still feels like mom. It's maybe a bit unsettling that after spending a bit of time trying to get the right words out and failing, she can say in perfect Wanda intonation and facial expression - "oh come on, Case!" Haha.

Ignoring the prognosis and what is coming next, Kit, Pat, and I had a great day with mom yesterday. She got the EEG stuff removed from her head, took a shower, and was very excited about us brushing her hair. She has proven to have a good appetite for her normal food, but she's also shown a voracious appetite for orange sherbet, which we have an unlimited supply of. As I said, she feels like her normal self. The inability to easily express everything she is thinking may actually be a great thing, because it's meant that we've all been a bit more reflective than maybe we would be otherwise.

Callie, Mike, and Davis will come in town today. Demian (Kit's fiancé) will come in town on Thursday. We'll all be returning home by Sunday except for Callie & Pat, who are going to stay for longer. We've received a tremendous amount of support from friends - food, housing, conversation, swanky hotel rooms - and we are so thankful and think that the cards have meant a lot to her. (Please let us know if you'd like to send one to the hospital - I can provide the address. Just send an email to casetaintor@gmail.com)

There are a few words that mom has been quite fond of using to describe the situation - "crazy" and "weird." It's amazing how many complex thoughts you can express solely through the use of 'crazy' with changing intonation. Perhaps one of the more profound things mom said is that "it's crazy how weird weird can be."

Walking through Fire

Case here. I got in from Tel Aviv yesterday morning around 9:30am and hitched a ride with a friend to the hospital. When I first got in, Kit, Callie, and Pat were all here with Wanda and she was pretty lucid and was able to communicate and I spent the night here with her last night.

It's easy to stay positive if we're only thinking about the head problems, so let me start with that.  The blood on her brain has most definitely affected her ability to say what she wants to say. The nurses come in every hour or two and ask her a few questions followed by telling her to do various things like clenching her first, moving her legs, etc. The typical questions are 'what's your name,' 'where are you?,' and 'what year is it.' Depending on how sleepy she is, she will almost always eventually get her name out, but the other two questions are anyone's guess much of the time - "Pain City USA" was one of the responses to the location query (even though she says she's not in much pain right now). She never has trouble with the movement-on-command parts. It seems that as the day wears on, her responses become more difficult. For instance, our friend Elizabeth who is a pediatrician at Vanderbilt came by around 1pm with lunch for us and mom definitely recognized who she was and greeted her with a fully formed sentence that maybe had one or two words wrong. We took about an hour or two to eat and talk and when we came back, I asked mom who had come by to see her and she emphatically responded with 'Elizabeth!' Fast forward 30 minutes, though, and mom couldn't answer her name nor who I was. The brain is a crazy place indeed. Overall, her night was not-that-great when it comes to having coherent responses, but when 6am rolled around, she was demanding food and we were having a good conversation - obviously labored and confusing, but more complicated than just yes/no/gee. She's had a good appetite this morning and has been showing off her mental state to the slew of doctors that have come by and even went so far as to remind Dad that he needed to get the registration renewed by the end of the month on her S2000. To sum up all of her head issues - there's blood on her brain, it's stabilized, her mental function is getting better.

Now we get into the nitty gritty - why has her blood not been clotting and what about AML?

So - they know that her blood hasn't been able to clot due to her B cells creating factor 8 inhibitor antibodies. This inhibitor keeps her immune system from orchestrating blood coagulation, which means she wont stop bleeding even if she had a plethora of platelets. As far as I can tell, they have done two things to fix this, both considered temporary. First, they are giving her Novo 7 which orchestrates coagulation through a different means (??). Second, they have given her prednisone, a steroid, which should keep the B cells from producing the inhibitor. This has worked at stabilizing everything, but it's not a permanent fix.

Her bone marrow biopsy shows that she has 30% blasts, which is how they determined that she has AML. They are currently looking harder at the results of the biopsy to determine what has caused the AML (evolution from MDS, donor cells, her cells, etc), but the result of that shouldn't affect their next, immediate, course of action. She's going to need chemo to put the leukemia into remission and get us into a place where she can heal as we figure out the next steps.

OK - all of the above sounds reasonable, except there are a few problems that the doctors see. First, they don't really know why her body is producing the inhibitor. Their best guess is that the leukemic cells (T-cells, I believe) are somehow communicating with the B cells to tell them to produce the inhibitor. They tell us that they have never heard of this specific thing happening - typically they associate the inhibitor production with something like GVHD. It's not very comforting to feel like we're living an episode of House here. Second, chemo with bleeding in the brain is risky. If things go wrong, fixing it is complicated. Finally, she's already in a weakened state - far different from the last time she had chemo.

So - here's the plan, subject to change:

She'll go on chemotherapy tonight or tomorrow. Typically for AML, chemo consists of 7 days - 7 of one drug and 3 with two. Due to her current situation, they are probably going to go with 5/2 instead. Two weeks after starting chemo, they will do another bone marrow biopsy to see if the AML is in remission. If not, then more chemo. Unlike her previous chemo, this chemo will likely involve lots of transfusions of platelets and red blood cells. The doctor described this as being like "walking through fire." When the doctor asked mom whether she had any questions she laughed and said no and he responded by saying "well, I'm glad, because I probably don't have any answers."

As I said, their best guess is that the leukemic cells are causing the production of the inhibitor, but they could be wrong. If they're right, chemo will wipe out the leukemic cells which will also stop the production of the inhibitor - a good thing. If they're wrong, then she'll be very low on platelets and even if they add lots of platelets, her body will still be producing the inhibitor so she's at a high risk of bleeding. This could lead to blood building up in her brain which may mean surgery - a risky endeavor to say the least.

If all of this is successful, then we'd start talking about next steps, which may involve another transplant or something involving the lymph nodes... but the doctors aren't ready to talk about that yet. They want to get through the next 2 weeks before discussing the next steps.

So - them's the facts. For all the negativity you see above, I think there are reasons to be hopeful. First, mom looks good aside from the bruising and head issues - she has color and smiles (the permanent eyeliner was a good move for her.) Second, she reacted to the doctor's news with laughter in a sort of "well, that's where we are, let's get on with it" sort of way, which I will interpret as good of a response as can be hoped for. Finally - my mom is incredibly strong and positive and has an amazing support network of family and friends. Please continue to send your thoughts and prayers our way.

Hungry Wanda!
(The head wrap is for an EEG which has so far shown that we shouldn't be worried about seizures.) 

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!