• TomB
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  • From: Austin, TX
  • Registered: 2004-03-27
  • Posts: 1,095

Topic: Getting back to normal - personal update

Some of you folk have made kind comments about my daughter's renewed battle with leukemia, so I thought it was time for an update. Back in 2004 Amy went through 9 months of intensive chemo for ALL leukemia, and was considered cured. Then last December was diagnosed with AML leukemia, probably caused by the chemo treatments for the ALL. (We've met two other patients with similar progression.) The treatment she needed for AML included a bone-marrow transplant.
There was no correct "match" for the transplant in our family, but they found several matches in the national donor "bank" - so thank you to all who have been "typed" as possible donors in the national program: you are saving lives.
After delays for a couple rounds of chemo to be sure she was in remission, and to match timing with the unknown donor's schedule, she received her transplant on March 21. There was an exciting week (we prefer boredom) with an "engraftment reaction" and some subsequent complications, but she has gradually changed from daily blood tests to alternate days, to weekly, and twice a month. She is now back home and only has to travel to the transplant center one day a month.
Now, four months after the transplant, she started back to work (part time) this week. She still has some issues with the new immune system attacking her body (Graft-vs-host disease), but these should fade with time. She is still weak with low endurance, but the doctors say she is doing better than 95% of transplant patients.
Many thanks for all the prayers, and also to those who donated to her fund-raiser to help with those costs that insurance won't cover, and also to her employer (FedEx-Kinko's) for their excellent insurance and consideration for her.

  • From: Colorado Springs, CO
  • Registered: 2004-03-27
  • Posts: 3,622

Re: Getting back to normal - personal update

Tom: Thanks very much for the update. Be sure to give Amy a big hug for us and tel it's from all her Dad's weird VW buddies!

Clancy

  • From: City of Roses
  • Registered: 2004-03-29
  • Posts: 793

Re: Getting back to normal - personal update

Hiya Tom,

That is great news!

Thanks for the update.  It's nice for us out here to have some measure of closure on Amy's situation.  We tend to get a little involved.

One question for you........could you briefly explain the difference between ALL and AML luekemia?

Mike

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  • TomB
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  • From: Austin, TX
  • Registered: 2004-03-27
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Re: Getting back to normal - personal update

OK, but ignore my spelling of medical terms!
ALL is Acute Lymphoblastic Leukemia that affects the lymphocytes in the blood, and is closely related to Lymphoma - a cancer of the lymph glands. (ALL is still a bone-marrow blood cancer. Blood cells are continuously replaced by the bone marrow.) Childhood ALL is a more common leukemia. Over the past 20-25 years the cure rate has gone from 3% to over 80%! It usually responds to intensive chemotherapy (infused into the blood system through a chest-implanted catheter, done in the hospital) over 8-9 months of repeated treatments. They said Amy had ~50% odds of surviving the ALL treatments
AML is Acute Myloid Leukemia, which affects different cells. When treated with chemotherapy only it has a high chance of recurring, so younger patients are usually cantidates for bone marrow transplant.
Both these cancers start with a single bone marrow cell mutating into a fast-reproducing cancer cell that crowds out normal bone marrow cells. If the treatment to cure leaves a single leukemia cell active the cancer will return. That's why the treatments are so severe. The idea is kinda like "the Princess Bride" treatment: poison to kill the person "mostly dead" (and hopefully kill off all the cancer cells), then a rescue drug to stop the action while there are enough good cells to recover.
With AML they give a strong enough chemo to COMPLETELY kill off the bone marrow ("burn the village" is their technical term). Sometimes they also do full-body radiation to help kill off the old marrow. Then they give new bone marrow stem cells from a matched donor to produce new blood. The patient ends up with new blood type, new DNA in the blood cells, and a new immune system. The new immune system will tend to attack the patient's body, so they give anti-rejection drugs to weaken the immune system until it learns the new body is what it is supposed to protect, not attack. The good part of this is that the new immune system will also tend to attack any stray leukemia cells that survived the chemo, so they like to see a little "graft-vs-host" effect as that lessens the chance of a return of the cancer.
However, all such treatments involve strong exposure to harmful stuff, and patients are 3-5 times more likely to get another type of cancer later in life - but at least there IS a later in life!
They also said Amy had ~50% chance of surviving the AML treatment. So she's cumulatively had 3:1 odds against getting this far. We don't believe in "odds" anyway!

  • Registered: 2007-03-27
  • Posts: 2,422

Re: Getting back to normal - personal update

Good Deal Tom . Sound's Like the Young Lady is fast gettin back too stressin you out with New boy freind's and stayin out too late .
  My Cousin was Diagnosed with Hodgkin's when she was 11 ! Wasnt Good Out look at all .
  Told Us she would never have Children etc. etc Chemo was terrible , seemed like the Worse case scenario's every Stepp of the Way !
  She is Now in her Early 40's Married, has A Daughter and has been in Remission  or Cured for 20 + year's !
  It was rough ride !
  Your in our Prayer's !
                                              Sean

  • From: Austin, TX USA
  • Registered: 2004-03-30
  • Posts: 240

Re: Getting back to normal - personal update

Tom,

I don't check the general post often so please forgive my delay in replying. Most excellent news, I'm so glad to hear that Amy's doing better! She and your family are in my prayers, and please give her a big hug from my wife and me! - David

  • From: B.C.Canada
  • Registered: 2005-01-26
  • Posts: 2,610

Re: Getting back to normal - personal update

I care deeply but am at a loss for words. I've had serious health problems myself but one thing I was always glad of was that it was me and not my son. I can't imagine how it was before the good news.

One thing I've learned is that Doctors practice "expectation management". If they are less optimistic and things turn out better, they look good. If they are more optimistic, then if things don't turn out as well, they look bad.

Cops and lawyers do the same thing. I've never had things go as bad as Doctors said it would and I always thought it was due to their great skill but I realize now they set you up for that.

jim

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  • From: Northern Illinois
  • Registered: 2004-03-27
  • Posts: 1,105

Re: Getting back to normal - personal update

Tom, Thank you for the update. I was just looking up your e-mail address to inquire hor she was feeling. My thoughts and prayers are with your family.
-Darby

-Darby