Jessica

I don’t think I have ever heard anyone bad mouth a cancer patient. Instead, you hear about how very brave they are, and how wonderfully they handle the difficulties. You hear about their exceptional qualities and their unparalleled faith. And while I find myself on occasion lacking in many of these qualities, it seems to hold true for most everyone I’ve met. But even with my experience, there are some individuals who outshine the rules – those people whom I look up to for their strength and courage and faith. One of these unique warrior women is Jessica Kaylor. She is the niece of our family friend, and adopted Bauerlein sister, Jeanette.
Jessica is a true warrior. She has been battling longer than I could. She is a mother, a wife, a daughter. She has an amazing faith that has inspired and encouraged me on more than one occasion. And she retained that amazing faith even though she knew early on that her cancer, while treatable, was not curable.
Jess passed away today. By the time I post this it will be tomorrow. She has gone to God and I’m sure was greeted with a “Welcome home…do you feel better now?” She is no longer in pain and that in itself is a blessing. She was surrounded by those who loved her when she passed, and so she was doubly blest.
So, for any of you out there, who forget to live each day …I mean really live ..each ..day; to those of you who lose your faith; to those who start to get annoyed over the little things and for those of you who start to pity yourself for the hardships in your life instead of thanking God for the good things - I want you to remember Jessica. She is loved, and she will be missed.
Feel free to leave a comment, but I’m asking that you please say a prayer for the Kaylor family.

May flights of angels sing you to your rest and give you peace.
May they create your place in heaven and give you up to the Most Blessed.
May your soul endure no pain and experience no regret.
Let your spirit soar above all those you loved and grant them peace.
Send your light like a beacon for those who come after and grant serenity to all that must wait to be with you again.
Most importantly, know that you are loved still, by all who knew you and by God.

http://jessicakaylor.blogspot.com/

I think my stomach tried to jump out of my mouth today.

As much as I love the people who work at Westchester Oncology and Hematology Group (aka WOHG) and I do, I'm sick of seeing them. As Katrina mentioned, I'm having trouble keeping my blood counts up. And technically, it's not me, who is having the trouble. (Katrina is currently typing right now, as I am cacooned on the bed...Give everybody a wave, Katrina) [editor's note: what am I, like, three???] So at the risk of having Katrina hijak this post because she is pissed off about what I'm about to say, I will tell you exactly whose fault it is...

It's Katrina's. [We think.]

We think.

The current working theory is that for some reason, while Katrina's stem cells and blood cells work perfectly fine in her own body [exceptionally well, thank you], in my body they have developed an autoimmune "issue". For those of you who don't understand the concept of an autoimmune issue, it appears as though Katrina's immune system is attacking, and destroying, my blood cells [whose blood cells??!!] which is only humorous, because they are technically her blood cells. So, for those of you taking bets on which would win out, ADD or OCD, apparently we have a winner. [You lost me...which is interesting because I'm typing this...]

Here's the way it was supposed to work: My immune cells have been giving Fred a free pass; they drift by and they say, "Hey Lymph, ya puttin' on some weight?" We did everything possible to give them a clue, and finally they got it. They just didn't know how to fight it. My stem cells were the cave men of immune systems: they picked up sticks and stones and threw them at Lymph...which only served to piss Fred off. So we sent in special ops. Katrina's stem cells arrive and for the first few weeks, they do their job. My stem cells do offer to help: show them where the stockpile of stones is, give them tips on how to properly throw a stick...and Katrina's stem cells were very polite.

Katrina's cells: That's very nice, but we brought our own weapons.
Elizabeth's cells: (with awe) Ooooo....what's that???
Katrina's cells: (as if talking to 2-year-old) This?...This is an uzi. (Turn toward Fred) Watch and learn...

[Hmm...I suppose she has a point; Cells: stop attacking self & secure the perimeter....and stop listening to Elizabeth's screwed up immune system!! That's why we had to send you in to begin with!!!]

That's the way it was supposed to happen. But apparently Katrina's stem cells got a little trigger happy. [whoops!] So now, in the past two weeks, I've needed six units of platelets and two units of red blood cells...and all she says is "whoops." [whoops-a-daisy???]

So what is the fix for all of this? We're hoping that it's IVIG, which I'll be receiving on Monday at DFCI. You'll have to tune in next week for more on that procedure.

That's pretty much all I [we] have for today except to explain the title of today's post. This morning, I had a flashback to 10th grade Biology, when I recalled learning about the eating habits of a starfish. As you may know, starfish have a hard shell, and no mouth or lips, just a hole. So when starfish need to eat, it actually forcibly expells its stomach out through the hole, lands it on top of what it is trying to eat, partially digests it and then sucks it back in. That's what I felt like this morning as my stomach tried to jump of my mouth: a starfish. It made me wonder, if I cut off a limb, will it regrow?

A day at DFCI

(as relayed to Katrina by Mom/Elizabeth/Erica)

Elizabeth (and Mom) met with Dr. Soiffer, her oncologist at DFCI, in Boston today and Erica just called to say they are on their way home. Much information came of this meeting and simultaneously many questions were also left unanswered. We'd like to share with you the important stuff but also not bore you to tears...so here are the summarized notes:

• Elizabeth's stomach, fever & platelet symptoms are not Graft v. Host Disease (commence cheering);
• In fact, my stem cells have successfully engrafted into Elizabeth's body (in a measurable amount that I am forbidden to share with you per Elizabeth) (yay!);
• Dr. Soiffer displayed more puzzlement than alarm at Elizabeth's low platelet count (puzzled is better than alarmed---although I'd rather be puzzled while playing Pictionary than while in my doctor's office...);
• He has a few theories as to why her count is so low and he is testing them out this week. Elizabeth's theory is that her immune system can screw anyone up. Knowing that her ADD couldn't trump my OCD, I will seek out a different explanation. One of Dr. Soiffer's theories involves decreasing the amount of immunosuppressant medication that she currently takes; this could also alleviate some of her stomach issues (tentative cheer);
• Elizabeth will have follow-up blood work this week at Westchester where she will potentially receive additional anti-bodies and of course, platelets if necessary;
• Her next appointment with Dr Soiffer at DFCI is next Monday.

From what I hear, Elizabeth intends to post herself soon; it promises to be interesting, so tune back in for a bloody good time! (Umm...I think I just channeled my husband...or my father...or my pastor. I'm doomed.)

"On the upside, I'm not bleeding in my head..."

Elizabeth's resting on her bed in the darkness. We're working on keeping Gatorade down and, along with it, these under-achieving anti-nausea pills. You know your illnesses are compounding, when your goal is to steady your stomach enough so you can take Tylenol to get rid of your headache...THEN you can work on the rest of the meds you're on.

But at least she's not bleeding in her head.

Mom and Elizabeth had to return to the Westchester today because Elizabeth's lab results from yesterday indicated low platelets again. But when she went for her transfusion this morning, she already had the makings of a primo-migraine; it only got worse throughout the day. As many of you know, the Bauerlein headache reputation is one for severe light, sound, smell and motion sensitivity, not to mention the overwhelming urge to vomit. With Elizabeth, the overwhelming urge to vomit has become a daily visiter this week, but today was especially severe. Because of this and the lack of clotting (due to a low platelet count) the medical staff was concerned that she may have burst a blood vessel in her head which would be unable to clot. Obviously this could be very dangerous. DFCI and Westchester decided to run a CT scan to rule out bleeding in the head. It was ruled out.

So no matter how crappy she feels right now, the mantra is, "at least she's not bleeding in her head."

Elizabeth's next medical stop is a follow up at DFCI in Boston on Monday.

I just tried to read her this blog entry and found that she seems to be napping, for which we're very thankful. Prayers are now being accepted centering on keeping liquids/food down, keeping her slight fever in check and most of all, taking the nausea away. We're also offering a prayer of thanks for no bleeding in the head. So remember to say a little prayer!

Katrina’s medical primer to Elizabeth’s recovery

With all the questions I’m asked on a daily basis, this slightly misleading question is asked most frequently: How come we won’t know if the stem cell transplant worked until next year?

Well, here is your crash course in stem cell transplants. (Please note: this high school German teacher studied biology for exactly 1 year in college, with only 2 semesters in a genetics lab...read at your own risk).

Point 1: Cancer treatment

VIPER successfully treated Elizabeth’s lymphoma; before the transplant, she was declared CR (complete remission) as opposed to PR (partial remission). When she has a PET scan, we will know whether my donation through the stem cell transplant was effective in preventing a reoccurance. A PET scan is tentatively scheduled for about 100 days from the date of transplant. We pray this scan shows no active sites (which could indicate cancer) and that Elizabeth remains cancer free for ever and ever. (If this is all you want to read, you’ve gotten the main idea. Skip to the summary below & comment away.)

Point 2: Potential complications due to cancer treatment
Unfortunately, there can also be some complications from an allogeneic (donor) stem cell transplant.

Subpoint 2A: Because chemotherapy compromised Elizabeth’s immune system, she is especially susceptible to infection due to bacteria, fungi or viruses; thus the assortment of anti-fungal & anti-biotics that she is currently taking. We hope she will be weaned off of these in the next 11 months. This susceptibility is a primary reason for the perennial gloves and masks which one must don when one visits. It is also the reason that Elizabeth doesn’t want to see if you if you are coughing, sneezing, or oozing from any part of your body. It’s also the reason we get to lock her in attic. (Just kidding.)

Subpoint 2B: Elizabeth is like a baby; wait, let me re-phrase: her immune system is like a baby’s...without the health benefits of her mother’s breast milk (And look, I love ya kid, BUT...). Her body can’t handle a lot of foods, especially those to which she may have an allergic reaction or which could be “unclean.” This is why you gotta cook everything dead. She also has no acquired immunities and will need to re-develop them or be re-immunized with all the childhood vaccines. During the next 11 months, she will be able to try some foods that are currently off-limits.

Subpoint 2C: Another potential complication from a stem cell transplant is called graft vs. host disease (GVHD). This occurs when my stem cells screw up and wind up attacking Elizabeth’s organs/immune system rather than defending them. They know they shouldn’t do this and are currently doing as they have been ordered. (Go fightin’ stem cells!) Because Elizabeth and I were such a good match (insert any number of jokes here), the risk of this disease is decreased. She is also taking immunosuppressant meds for this--immunosuppressant meds are yet another reason for mask and gloves. She may need to take some of these meds for months or even years as GVHD may rear its ugly head now, in a year or in three years.

Summary: Generally speaking, the doctors are pretty impressed with our Elizabeth, although currently her platelet count is a little low and she may require a transfusion; she’s bouncing back faster than the “typical” patient and they’ve actually sent her home ahead of schedule. (Woo-HOO!)

I know this may not be a very entertaining post, but I hope it has proved informative. Besides if I begin to post mundane things, maybe Elizabeth will take the reigns herself again.

Is everyone paying attention?

Are you sure?

This is important.

OK.

First...notice the name of the song.

Got it?

Not yet?

OK ...try listening to the refrain.

You still don't get it?

Fine. I'll just have to spell it out for you.

I-M C-O-M-I-N-G H-O-M-E!!!!

I don't hear anyone cheering.

I'm coming home people. There should be a parade. OK, so I won't be home until late tonight, so maybe a parade is over reaching. Instead, feel free to leave a comment. It will be like a blog parade.

Send me some love
-Elizabeth