12 Year Old Daughter with relapsed ALL needing bone marrow transplant

Can I just say I'm exhausted before I say anything else? My father is also battling cancer. I'll discuss him in the My Parent is Sick forum.

My daughter was diagnosed with ALL on April 28, 2008, when she was 9, and my husband and I were on our 10 year wedding anniversary trip when it happened.

She went into remission extremely quickly (she was an early rapid responder), and had little to no reactions to any of the chemotherapy treatments for the 2 1/2 years she was being treated. She completed her treatments on July 3, 2010.

She got a fever one day and her hem/onc decided to do a flow test because her counts weren't coming back up as quickly as they should and they found that she relapsed on October 20, 2010, 15 days after she turned 12. Because she relapsed less than 3 years from diagnosis the hem/onc doctors said her best chance for a cure is a bone marrow transplant. Luckily we live a short 2 1/2 hour drive from the leading BMT clinic in the United States. They have only tested her brother for a bone marrow match because he was the best bet, but he wasn't a match. Luckily, they have found several donors of both bone marrow and cord blood that they can use. At this clinic they prefer to use cord blood, so that's the direction we're heading at the moment.

We started treatment again immediately, and she were able to get her in a trial because of a special protein she had on some of her leukemia cells and was back into remission within two weeks.

It's tough because we also have a 10 year old son. So more often than not, he's only with one of his parents, and she's only with one of her parents. Soon we will be living in two different spots. One of us at home with our son and the other at the Ronald McDonald house while our daughter is in treatment for her BMT, which will hopefully be in February if she stays on track like she has been. Our last block of chemotherapy for this treatment prior to BMT is scheduled to begin on January 4th and lasts for 36 days as long has her platelets and ANC are at the right levels.

To top it all off, she unfortunately got an infection via her Hickman line (which they took out and replaced with a PICC line and the fevers immediately disappeared). It is a rare non-tuberculosis bacteria and only two cases of it have been reported in the US. They believe that this infection, which caused high fevers, and the intrathecal methotrexate she had during a routine lumbar puncture caused her to have a mild stroke. She has no ill effects, it only affected her speech and her face, but at two weeks out, you'd never be able to tell that anything has happened at all.

Right now we're in the hospital getting a high dose of IV methotrexate over 24 hours. the bag of chemo is bigger than any other bag of anything I've seen her get. It's disheartening. The minute she enters the hospital she immediately gets stomach issues and we can't get her to eat anything... even food we bring from home. I'm on the verge of meltdown more often than not. :(

Clarissa

Comments

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  • Clarissa,

    You sound like a great mother. I always hated when people talked about how strong I was, it wasn't me it was my daughter, as a mom you just do what you gotta do. My girls are older than your children, Em was 24 (26 now) at diagnosis and her sister was 18, she got abandoned by her big sister and mom in a split second. Her dad was here but it's just not the same transitioning from Child to Adult, carefree to responsible, High School to College. But the healing is taking place and it has gotten better after end of treatment. I can unfortunately imagine what you are going through I don't want to but I can. My Parents recently moved in with us my dad is 85 and mom 81 (she has Alzheimer's) I'm 60 So I can also relate to you being the ham in that sandwich. If you ever want to vent let me know. I'm here if you need me. As far as eating in the hospital, Em never would, sometimes for 5 or 6 days. It is so hard to be a mom and want to feed them and they just can't. Please stay in touch and know that our family is sending love a healing thoughts to you and yours.

    Gloria