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!