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