Introduction - Looking for Support

[JackieDooley]

Hi All,

I just found this site this morning. My 11-year-old daughter needs a liver transplant due to a rare form of vascular cancer which started in her portal vein and spread to her liver. She has an enormous tumor in her abdomen (over 20 cm) and has been on the waiting list for about a month. Chemo did not work to shrink the tumor.  I am going to get screened next week at NY's Columbia Presbyterian. Our blood types match and I am in moderately good shape (I was cycling 20 miles/day 3 days/week until Ana got sick in August). So, now I've gained 10 pounds since then and could stand to lose about 15 pounds, but otherwise I think I'm healthy. I'm worried about a lot of things - but primarily that I won't be a match. I want to do this for her.

I plan to continue reading through the site and hopefully meet some other parents who are donors as well as people who have been living liver donors. It breaks my heart that if I end up being my daughter's donor, I won't be at her bedside after transplant - but I also want her to get better. I am keeping a blog about this entire horrific ordeal here - www.anadooley.com - if you want to learn more about her situation. I'd love to hear from people, and get to know more about what to expect and also how people are doing months and even years later after transplant. I'm just so anxious about everything.

Thanks,
Jackie

[sherri]

Jackie,

so sorry to hear about your daughter's need for a liver transplant. Thankfully she is eligible for a transplant with her type of cancer. There is a mom on this forum who donated to her son Joshua when he was a year old. Her name is Tammy and she posts as Joshua_David I think. Search in the search box and you can email her. She probably has a good perspective and can relate to your situation.

Wish you and your family all the best as you embark on the transplant journey.

Sherri

[JackieDooley]

Hi Sherry,

Thank you for your response. I'll search for Tammy and see if I can send her a message. Ana's type of cancer is not one that typically spreads, though on rare occasions it can spread. It's extremely rare - all of the surgeons and oncologists we've spoken to have basically said the same thing. The only "cure" for this is transplant. It's all pretty crazy. I'm going for my screening exams/meetings next week.

Thanks again,
Jackie

[elephant]

Dear Jackie,

Right after my kidney donation at Columbia Presbyterian, I met a woman who volunteered on the transplant floor in gratitude for her liver donation to her son.  They were both doing great! If you ask around the hospital they might connect you with their volunteers. 

love, elephant

[Karol]

I am so sorry for your daughter, so young to have to experience this. Best of luck with the evaluation. I hope it all works out. {{{BIG HUGS!}}}

[peterduvall]

Jackie

Sorry to hear your daughter is sick, it's really hard to see a child experience anything so difficult. I'm sure reaching out and getting evaluated for donation has been a help. A friend of mine's wife donated a partial liver to his then very sick son 6 years ago - the son is now a healthy, crazed 12 year old. I donated a kidney to my father 5 years ago at Columbia Presbyterian and I'm feeling fine. I thought Columbia was great, the surgeon's were amazing, in and out of the operating room.

Wish you and Ana all the best

Peter

[dodger]

Hi Jackie, first off, as a parent and grand parent I am soooo sorry your family is going through this.

I also want you to make sure that before you mention being a donor or start testing that you apply for life insurance.  It can be difficult to obtain after donation, the rates can become a lot higher.  Sorry, that is just the truth.  Hope you also have some disablility insurance or at least family leave time.  I have disability insurance that I have used several times in my life, it has been well worth the cost.