Happy Mother's Day (2015)

Case here - in honor of Mother's Day, I thought I'd share what I wrote last year but left unpublished.

Here we are at Mother’s Day, a month after Wanda’s passing. Life has seemingly returned to normal - a new normal with a large absence. Sophie and I live far away, so we didn’t feel the physical & tactile presence of Wanda every day, but we felt her energy. We talked on the phone most days and FaceTime’d once, maybe twice a week. I’d send her pictures of our son. We were very close. I could go on about how the last days with her were or how the past month has been, but there’s one thing that has struck me about the whole thing, and that is the power of shared experiences and the power of togetherness and friendships.

It’s easy to look at losing a mom from a selfish point of view - the point of view where no one in the world has experienced such a loss as you just experienced. For me, it’s very easy to think that way because my mom and I were very close - like best friends. However, by listening to those around me I have come to accept that you really can’t quantify loss. I’ve heard grown men in their 60s tell me about how they still have moments of thinking “I should ask mother about this.” I had another friend take me aside when I got back to Israel and tell me about his own experience of losing his mother - about the pleasant dreams with her in them, about the sadness his siblings have felt, and about the general suckiness of the whole situation. The feeling that I’m not alone in the feeling of sadness has served as a comfort to me and, in some strange way, has made me feel more connected to the greater world around me - like it’s reminded that I am a cog in the human condition.

When Wanda had her stem cell transplant, I was able to take about 2 months off of work. She needed someone to be there for about 100 days after the transplant and the clinic told us that it was best if that could be a single person. Between myself, my dad, and my sisters, we couldn’t string together that many days of consecutive coverage, so we did the best we could and called on a few friends to spend a week with her. I think Wanda had two reasons to hate this. The first is that she was worried that something terrible would happen and her friends would be in a position to make life or death decisions for her, and who wants to do that? The second reason was just that she wanted things to be different. She wanted her kids to live closer. She wanted her husband to be able to keep track of everything and be able to just take 3-4 months off of work. Eventually, she gave in and accepted the graciousness of the friends and I don’t think she ever looked back. This last time around, she still disliked having to depend on other people to take her around, but from all that I know of what she told me on the phone, she didn't really dislike it, she just felt that she had to say that she disliked it. You know, like when you have friends over and you feel the need to say "sorry the house is a wreck" even though you just spent an hour cleaning it, it's spotless, and your friends actually live in a barn. In her last year, she embraced and cherished the alone time she got with so many of her long-time friends. Thank you all.

Happy Mother's Day!

Going Home

Our sweet, funny, smart, loyal and loving Wanda left us on Friday, April 10. All Thursday she was itching to get home, restless in the hospital bed. Once we started to make the move, and we assured her that she'd make it home, she seemed for the first time to truly rest. 

Once home, she acknowledged being here and waited patiently until her body was finally ready to let her go. We are so grateful to have gotten her home and to have had that special time with her in the house my parents built 35 years ago. 

Thank you for loving and supporting our mother and wife through the past four years. This is one of our favorite pictures of her, taken when she was very much alive and very happy to be outside hiking with her friends.  Below that is the obituary that will run in the Chattanooga Times-Free Press tomorrow. 

Wanda Leigh Taintor, 65, of Signal Mountain, passed away on Friday, April 10, at home surrounded by family. A longtime Signal Mountain resident, former Bright School teacher and lover of all things fun, Wanda leaves behind a loving husband, Pat, and three children, Kit, Callie and Case, and their spouses, Demian, Mike and Sophie, and two grandchildren, Davis and Patrick, along with another grandbaby due in June. Wanda joins her parents, Curtis and Louise Spicer, and her brother Eddy, as well as friends who went before her, in heaven, where she is surely already the life of the after party. To all who knew her, Wanda will be remembered as a “wandrful” and thoughtful person, who always took time to cultivate friendships and was generous and loyal to family and friends. Born in Virginia, Wanda attended Longwood College, graduating in 1971, before marrying Pat and moving to Tennessee, first to Nashville and then to Signal Mountain in 1974. In 2007, Wanda received her Masters in Education from the University of Connecticut. (At the time, one of her friends remarked, “why do you need a Masters? For your obituary?” Wanda got a kick out of that and would laugh to see it mentioned here.) No one loved living more than Wanda. She was the friend, wife and mother you’d call to laugh with, cry with, travel with, drink wine with, sew with, and smile with. If we all lived like Wanda, we would live fiercely, travel widely, laugh often, smile broadly, give hugs freely, and love friends like family. Wanda will be remembered at St Timothy’s on Signal Mountain on Monday, April 13 with a visitation at 3 pm, service at 4 pm, and a celebration of life to follow. In lieu of flowers, the family requests donations in her name to St Timothy’s, a church community where she worshipped and raised her family. The family would also like to take this opportunity to thank her many friends who have helped through this journey; we are truly, truly grateful.

Now the Green Blade Riseth

After a pretty dim January and February, we were all hoping for a more positive March and April. The highlight so far was one good week in early March, and unfortunately now we're back to what Mom called the "dark ages" in a blog post she never published.

Over the past week or two, Mom has taken a turn for the worse, culminating in a trip to the ER this weekend. There are a bunch of things going on that may or may not be related, all making life pretty miserable outside of the moments of levity and fun with family and friends. (thank you all)

The problems (muscle tightness inhibiting walking, confusion, racing heart, pain) may be related to drugs, or they could just be the leukemia taking over. That is what the doctors are trying to figure out as they work to stabilize her and get medications out of her system. She is currently in the cardiology ICU after a spike in heart rate.

Case is in Chattanooga with dad, and Kit is flying in today. Unless something changes, I'll be heading that way tomorrow evening.

Though of course we hope for some miracle (it is Easter after all), it is seeming like the best outcome may be getting her stabilized and comfortable to send us all home with hospice support. I know she has felt and appreciated all of your love and encouragement along this journey, and I ask for prayers of peace and comfort for Mom at this point.

It is hard to leave her alone in the ICU when visiting hours are over, but I am reminded that she is not truly alone. Please remember her especially in those moments, when she is physically on her own.

We also wanted to share with you one of her favorite hymns, "Now the Green Blade Riseth," which incidentally is one that we sing at St. Timothy's almost every Easter. She says it is her favorite because it was always all of our favorite. She loves singing, and unfortunately for her, we are all pretty terrible at it, though we sang this one fairly well ever since learning it in youth choir.

Now the green blade rises from the buried grain,
Wheat that in the dark earth many years has lain;
Love lives again, that with the dead has been:
Love is come again, like wheat that springs up green.

In the grave they laid Him, Love Whom we had slain,
Thinking that He’d never wake to life again,
Laid in the earth like grain that sleeps unseen:
Love is come again, like wheat that springs up green.

Up He sprang at Easter, like the risen grain,
He that for three days in the grave had lain;
Up from the dead my risen Lord is seen:
Love is come again, like wheat that springs up green.

When our hearts are saddened, grieving or in pain,
By Your touch You call us back to life again;
Fields of our hearts that dead and bare have been:
Love is come again, like wheat that springs up green.

We all listened to this version today (useful because it has subtitles): http://youtu.be/g-5Bi2jM40E

March Madness

Hi there, 

Just a quick update of what's going on over on Signal Mountain. Mom promises she will send out a more personal update soon, so I'll stick to the facts.

The 'chemo light' (aka dacogen) that mom has been on since leaving Vanderbilt last summer has done her pretty well. Her leukemic blasts went down fairly dramatically, though doctors do not expect this regimen to put her into remission. 

For that, she first tried a drug called Ipilimumab, which is a drug that has been wildly successful for some people and some types of cancers. Unfortunately, after two rounds of this drug at a hospital in Atlanta, she was told that it wasn't working for her. 

Her doctors at Vanderbilt had been looking for other options and found one at Sarah Cannon in Nashville. This drug is an inhibitor drug that inhibits the body's production of a protein that cancer cells need to thrive. This protein is one that normal cells do not need. It is therefore less toxic than any type of chemotherapy, but has been shown to halt the proliferation of cancer cells. In some cases, it has killed cancer cells by starving them. We are hopeful that this will work for her.

She just began this regimen this week. It will mean a weekly trip to Nashville for a couple months, then more infrequent trips up there. 

A number of you have been asking about meal delivery. We have re-activated the meal train account to coordinate this should you be interested. Please see instructions below. She could also use companions for the trips to Nashville if anyone is interested in helping out that way!

Thanks again for your support and prayers. 

Callie

To sign up for a meal, 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 that you can choose from. Click "Book this Date" if there is a day that works for you.

Happy New Year

I hope all of you had a wonderful holiday season. Ours was wonderful. Kit, Demian, Callie, Mike and Davis (plus the added bonus of Mike's terrific dad) were all here for the festivities. We hated that Case, Sophie and Patrick couldn't be here--they spent the holiday with friends in Bulgaria.  Can't feel too sorry for them.
Since we last posted we've had excitement around here. Kit and Demian got married in a small ceremony here on Signal Mountain. It was lovely--the bride and groom make a lovely couple!  That event was closely followed by another 5 days of dacogen.
In November I went to see two doctors; the first one was in Atlanta. I had heard about a research trial from the doctor at Dana Faber in Boston.  He was working on the research with a doctor in Atlanta, and he had suggested I might consider it.  The drug is called ipilumumub (ipi).  It has been used with solid tumors but is in the trial stage for blood cancers. The trial is small and just open to folks who have a relapsed stem cell transplant. The hope is that the drug will urge the donor cells to be more active in fighting my leukemia cells.  Then I went to Vanderbilt to see what they thought. They were encouraging, and I came away thinking that maybe I would have a Donor Lymphocyte Infusion.  This is when they get white cells from the original donor to fight the bad guys. There were two "ifs" to this plan. I had to have at least 20% donor cells and less than 10% blasts (immature cells released by the bone marrow). The blasts were okay. The donor cells were not. I had 86% donor T-cells but only 1% (I did not forget a zero) donor B-cells. No DLI.
I thought those numbers would keep from getting into the ipi trial, but alas, no!  Monday I went to Atlanta to finalize plans to proceed with the trial. I will have to go to Northside once a week, and I will get ipi infusions every 3 weeks for 4 sessions. If it is successful, it will put me in remission and avoid having to make a decision about doing 7-3 induction infusion. I will keep my hair and fingernails!  So send prayers and good wishes that ipi does the trick. Where we go after remission is still under debate. A success story will buy me some good times, hopefully. Love to all. I'm out of room.

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!