Personal Experience
Due to our daughter being on hospice, we did think ahead about the possibility of her passing and we did approach the doctors about doing an autopsy and donating tissue in the event of her passing. We did have a plan all laid out with her oncologist, her former oncologist at the University hospital, our hospice care team and even with our funeral director so that they were aware of where our daughter would be going to after her passing and before she came to their facility.
I understand that some people are not given the luxury of time to make such a heart wrenching decision. My main reason selfishly was not to even help others if I am to be honest but to just get the cancer out of her once and for all. Helping others was just an added benefit. We did decided to donate her brain and spinal cord to the University and I think where ever any extra tissue could be sent they sent it. The autopsy was free of charge to us as was transport. Everything was taken care of for us and our daughter was handled and taken care of with the utmost respect and gentleness. We we able to have a regular viewing and she looked absolutely beautiful. We were extremely pleased with how efficient it all went in light of what we were facing. Also having it all planned out ahead of time really helped us to just be there for each other, our children and with our family during the most difficult time in our lives.
So our advice would be to mention this as soon as possible to families and work with the oncologists and hospice team members.
II truly believe this is something that is so important and that people need to know about.
----mom of a 11 year old Angel
On October 18, 2007, my daughter, Mara, was diagnosed with DIPG after about a month of sporadic symptoms including drooling and lethargy. We immediately began radiation treatments and registered Mara for a clinical trial, the only clinical trial that was administered in our locale. Probably mid-way through Mara’s diagnosis with DIPG we heard about the need for tissue samples. For us, the decision to donate seemed easy and quite frankly it seemed like the only way we could make a difference for the future of this disease. To us, donating meant that if Mara were to pass away, it would not be in vain, for perhaps someone else could live even though she could not. Initially though, we prayed to be THE MIRACLE and didn't want to think about crossing that bridge.
It wasn't until Mara's Pediatric Oncologist set up a Palliative Care meeting for Mara at the end of August 2008 (approximately 1 month before her passing) that the issue was discussed directly with them. As I recall, we were the ones in this meeting to bring up the sampling issue. As I look back, I was a little surprised that our medical team never mentioned it to us directly. However, I see their wisdom in it now- what kind, compassionate doctor can tactfully ask a parent for a tumor donation when their child is still living and the family is still fighting? I understand why most won't unless the family suggests it first. And then afterward, unless something happens very quickly, it's almost too late. So, Bryan and I brought up the issue of having Mara's tumor donated upon her passing as well as any other organs that could be donated.
Dr. Geyer was honored that we would suggest donation. He explained to us that we'd have to sign a consent form and we did that at Mara's next CT scan, which was a few weeks later. The consent form we signed was a rather generic form. It was a form that anyone would sign to release tissue, whether it is due to the child's passing or just a simple donation derived from a biopsy. We made it clear at this time that we'd like samples to be sent to St. Judes and to Dr. Warren at NIH, as well as the researchers at Seattle Childrens. At the time, these were the only institutions we knew of that were accepting donations.
Dr. Geyer told us that they'd take care of arrangements in the event of her passing. He did communicate with us the need to have Mara transported post mortem and taken from our home in Auburn up to Seattle (about an hour away). He told us that any cost associated with the transportation would be paid for by the hospital.
The day of her Palliative Care meeting, we found out Mara had a bleed in her tumor. Immediately, Hospice came in to help us, as things were very touch-and-go for Mara. We were not prepared for this to happen (how could you be?) but felt grateful that we'd had that initial meeting about the tissue donation, just in case something happened. A few weeks passed and we took Mara in for what would be her last CT scan and doctor's appointments. With Dr. Geyer and his team clad in their "Mara's Team" shirts, we signed the consent form there. The paperwork was all in order as far as the hospital was concerned.
As the week continued, we realized that we should probably at least touch base with a funeral home to let them know about our situation and that transportation would be an issue. Bryan made this excruciating call, an act I can never imagine doing myself. It seemed against every parental inclination to arrange for our child's death when she had not yet passed. This phone call occurred only 2 days before Mara left her earthly home. The funeral home assured us that this would not be a problem. We gave Hospice the funeral home information, which worked out well because when Mara did pass away they took care of everything. We didn't have to think about it any more after this phone call. It made the decision much easier in the long run.
Mara passed away after a 12-hour intense struggle, at 8:12 a.m. on September 22, 2008. Both sets of grandparents, 2 aunts, her siblings and Bryan and I were all nearby when Mara slipped away. Our Hospice nurse arrived very soon after Mara’s passing (Hospice nurses had been in and out throughout the course of the night) and started making preparations. I began the process of getting my little girl ready for nearly the last time. When the moment was right (probably an hour after she passed) I began to bathe her, dress her, do her hair. Grandmas helped Natalie (Mara's younger sister) pick out the right nail polish for her fingernails. We put on just the right dress and picked out her favorite jewelry. We took some precious pictures of the kid’s hands together. This time with her was so very painful, yet it was peaceful. It was excruciating but sacred. I would not have traded this precious time for anything. The funeral home came at approximately 10:00 a.m. to pick up Mara. We held a family prayer and then Bryan carried his baby girl for the last time to the van (rather than use a stretcher) in a final act of love and compassion.
Looking back, there are moments when I wished I had perhaps 1 more hour with Mara's body before they took her away. However, things were beginning to happen to her body (blood was starting to pool- something we were told is very normal) and I'm not sure that I'd like to witness every detail of nature taking it's course. We did everything we could have done. We did have the privilege of dressing her at the funeral home 4 days later before her viewing. It was nice knowing that we'd have one more chance to see her alone. Sure, it was not the same but in some ways Mara looked more beautiful at the funeral home than she did at our home. I don't think as a mom that I realized how sick Mara truly was. That probably sounds silly, how could I not know, right? But I just think that we kept picking up and moving forward so many times that I didn't absorb completely what was happening. It wasn't until I looked back at pictures of her last days that I could see how sick she was. At the time, I just saw my perfect angel without any imperfections. Even to this day, when I think of memories with Mara, I think of her running and playing, not lying on the couch with a feeding tube in her nose.
The day Mara passed, we received a phone call from Dr. Geyer and from our nurse practitioner telling us that the autopsy was being performed and informed us that her transport went smoothly. They cried with us, and thanked us. Soon after Mara's passing we received a phone call from the donation center verifying our intent to have the corneas also donated. We could have missed this phone call had it not been for others answering phones for us at the time.
Just a few weeks later, we received a letter from the donation center indicating to us that Mara's corneas were indeed used. We cried tears of joy knowing that a small piece of our daughter was still alive. It made us want to find the person and gaze into their eyes. It was made clear to us through the letter that anonymity was paramount in this situation, however. I understand why this has to be and appreciate that we can write an anonymous letter to the recipient telling them about Mara. Later, we also received a note in the mail from Dr. Geyer thanking us once again and letting us know that in his opinion, we did everything possible to help Mara. Reassurances like that mean the world to grief-stricken parents.
In the end, nothing about this disease is easy, nothing. I understand that the decision to donate is most personal in nature. However, the pride in my heart for my daughter’s offering is beyond description. For us, this was the best decision and will allow Mara’s legacy to live on.
~ Heather Adams, Mara's Mom
Last update May 27, 2009