On the line: Housing help needed
When we reported to work today, we followed the regular routine which includes checking the voice mail. This morning, we had a message from a transplant center coordinator reaching out for help on behalf of one of her patients.
We have a patient who…basically, we have put his transplant on hold for a few of weeks because we have been trying to find housing for him. He cannot afford it. He does not have any money and his insurance does not have a travel and lodging benefit, and we don’t have any means for any kind of free housing here for him. So I called [another organization]. They don’t have any grants that would be available for me to apply for him now to help with post-transplant housing, but they referred me to you. They said that The Bone Marrow Foundation has grants up to $1,000 that patients can get if approved. And that would be…[sigh]…that would actually enable him to be able to get his transplant, otherwise he won’t be able to do that.
After a bone marrow or stem cell transplant, doctors must carefully monitor the patient, often requiring weekly follow-up appointments. The prevention of post-transplant infection is a major concern as the patient’s immune system needs to regain functionality. (In the case of allogeneic transplant, the immune system has been suppressed in order to reduce the risk that the donated cells will be rejected.) The cost of weeks or months of clean housing near the transplant center can be a stumbling block that prevents a patient from receiving the procedure needed to save his or her life.
Photo: "framed" by reallyboring
Assistance with housing expenses is one of the most common requests made of The Bone Marrow Foundation’s Patient Aid Program. You can help the Foundation assist more patients in need of assistance with housing and other transplant related expenses by clicking here.
A Story of Love
This is not your traditional Valentine’s Day love story. There are no star-crossed lovers, no romantic proposals – but, it is definitely a story full of love.
Barbara with her sons
As a former newscaster and attorney, 36 year old Barbara relished challenges. But nothing prepared her for the diagnosis that came on Mother’s Day 2010 – acute myeloid leukemia. She had just give birth to her third son.
“I remember telling my doctor, I have 3 young boys – I cannot have cancer,” says Barbara.
Barbara started chemotherapy immediately. She enjoyed 10 months in remission before relapsing.
In September 2011, Barbara and her father relocated from Honolulu, Hawaii to Seattle, Washington for a stem cell transplant. Her father was her donor and caregiver.
“He gave me the gift of life twice. It is simply magical when you truly think about it,” says Barbara. “He was the most patient, stable, consistent caregiver. He is an amazing man. All the nurses at the Clinic loved him.”
Barbara received her stem cell transplant on October 28, 2011.
“As I watched my dad’s stem cells dripping through the IV, I thought, this is my chance to live – to see my sons grow up. This is it,” says Barbara.
Barbara endured 4 months of recovery in Seattle. Though still battling side effects from the transplant, Barbara recently reunited with her family in Honolulu.
“We are so grateful for the advancements in stem cell transplantation that allowed this type of haploidentical (half-matched) transplant possible,” says Barbara. “It wasn’t an option a few years ago.”
Now, the medical bills are starting to come in. Barbara is not medically allowed to work while recovering. She and her family continue to struggle with the medical costs associated with her transplant, as well as post-transplant expenses. And there remains the possibility of relapse. But compared to a second chance at life, Barbara knows this is all manageable.
“You can’t put a price tag on life. I want to see my sons graduate and have families of their own. I want to live a rich and full life with my husband of 10 years,” says Barbara. “There is so much more to do in life. There is so much I can contribute. I just pray this is in God’s plan.”
If you would like to share some love this Valentine’s Day by helping a bone marrow, stem cell, or cord blood transplant patient, check out Lifeline Project.
Finding a Bone Marrow Donor
Allogeneic bone marrow/stem cell transplants (BMT/SCT), by definition, rely on the availability of a healthy donor whose bone marrow is biologically compatible with the recipient – what doctors refer to as an “HLA match.” HLAs, or human leukocyte antigens, are protein “markers” found on the surface of white blood cells. They serve as a kind of genetic fingerprint, enabling the body’s immune system to recognize the body’s own cells. HLA markers occur in pairs, with one part of each pair inherited from a mother and one from a father. Therefore, the search for a matched donor begins within a patient’s immediate family. There is a 25 percent (1 in 4) chance that any one brother or sister perfectly matches a sibling’s HLA type. The overall chances of having any sibling who is a match depend upon the number of siblings.
Potential donors need to be tissue-typed, which involves taking a series of blood tests to determine if the HLA “fingerprints” match. If a brother or sister doesn’t match, parents are screened for HLA compatibility, followed by the extended family of aunts, uncles, cousins, etc.
If a sibling or family match is not available, the transplant center should have procedures for finding an unrelated donor through national bone marrow registries, such as the National Marrow Donor Program. They will search a database of donors to identify a potential match. On average, the chances of finding an unrelated donor with a similar ethnic background are 60 to 70 percent. If someone is found, the registry contacts the potential donor with instructions about how to proceed. The identity of the donor is always kept confidential for a period of time following the transplant, after which point the patient and/or the donor are free to contact one another if both give written consent.
As successful as national registries have been in helping identify unrelated donors, many people in need of a BMT/SCT are unable to find a matched donor. To help fill this unmet demand, alternative sources of stem cells are being explored. For example, blood harvested from the umbilical cord of newborn babies (at no risk or pain to them) is a rich source of stem cells, and the use of cord blood in the BMT/SCT setting is increasing.
Related donors who are not exact HLA matches may also present an alternative for BMT/SCT candidates with no matched relatives. These “HLA-mismatched” procedures need to be discussed with the patient’s doctor. Such donors have not previously been a viable option because of the high risk of Graft vs. Host Disease (GVHD) and graft failure associated with such mismatches. Recent advances have helped make this an option in some cases.
