Fear becomes a constant companion when one’s child is desperately ill.
Kim Lahti-Scranton knows this all too well as her daughter Jane is fighting for her life at BC Children’s Hospital.
As much as Jane’s journey is all-consuming, Kim is helping a desperate woman to get young people to donate bone marrow in order to find a better match for her son, Noah, who is in critical need of a bone marrow transplant – soon.
The Scranton family is living in Vancouver’s Ronald McDonald House and shares a kitchen with 17-year-old Noah Stolte’s family.
Noah survived a first round of cancer when he was 10. In April, the family was given the terrifying news that he had relapsed.
“His mom thought they were going to find a match within family; they’re 100 per cent Dutch,” says Kim, noting family members are usually the best choice, but his three sisters are only a 50 per cent match.
Out of the worldwide pool of donors, there are two people who are a 75 per cent genetic match and are being considered, one of whom lives in Europe. The lower the match, the more chance there is for complications and a less than optimal outcome.
There is a time crunch as Noah needs to have a transplant sometime in September and it can take a couple of months from registration to donation.
One of Kim’s nephews is an NHL player, who used his connections to help Noah’s aunt interest 85 people in becoming bone marrow donors in Edmonton.
Unable to get help from Canadian Blood Services to organize a similar drive in Vancouver because of staffing issues, Kim and Noah’s mother, Stacey VanderLee Stolte, went to a Vancouver Canadians game to raise awareness and hopefully encourage people to sign up to be on the registry for stem cell or bone marrow donation.
“We were met with a whole range of responses – from people who were incredibly receptive, to people who completely ignored us and everything in between,” says Kim. “We got some interesting comments like ‘no kid would want my bone marrow, I’ve done too many drugs,’ to other people saying no because they thought if they were a match that donating bone marrow would be too painful.”
Dr. Lucy Turnham, a clinical associate who oversees the outpatient oncology clinic at BC Children’s Hospital, has performed Jane’s procedures and says males between the ages of 17 and 35 are the best resource.
“It’s one of the most wonderful charitable donations you can do,” Turnham says, noting many people never receive a call. “It has a huge impact on a patient who has no other options.”
Turnham explains that donors are educated before they do a swab. If they are told they are a match, they can still say no at any time. They then undergo further testing and maybe counselling at that point, and can still back out an any time.
“If they had said yes and the patient begins treatment to get rid of the diseased cells prior to transplant, and then the donor backs out, the patient’s life is at serious risk, so it is important to know what you are getting into before saying yes,” Kim stresses. “If the donor says yes to the procedure, they are told beforehand when the treatment would start and told when the last chance to back out would be.”
Stem cell donations can be made in two ways: the donor is hooked to a machine with IVs in each arm. Blood is taken from one arm, stem cells are removed, the blood is replaced through the IV in the other arm where the body grows more stem cells.
Or, the donor is anesthetized, a needle is placed into the hip bone from the back and part of the bone marrow is sucked out.
“You might be a little bit sore afterwards, but for less than 24 hours,” Turnham says, noting women can be donors but not if they have been pregnant. “Young bone marrow is more robust and we regenerate marrow and blood all the time.”
Becoming a donor is not a speedy process for people living in smaller communities, but would-be donors can receive a swab kit through the mail and return it postage-free.
Marc Plante, a representative with the national office of Canadian Blood Services, says people can go to www.blood.ca and proceed to the Stem Cells tab at the top of the page.
“If you have an opportunity to save a life and just put up with a couple of days of discomfort, I would do it in a heartbeat,” says Kim, who must also face the reality that Jane could one day be in the same dilemma. “If most people had the opportunity to save a life, they would do it.”
The Scrantons have been living at Ronald McDonald House for several months, while Jane receives treatment.
“She’s as good as can be expected; she’s very compromised and we need to make sure she’s not exposed to anything,” says Kim, noting the first, and this, the fourth phase of treatment, are considered to be the toughest. “She has nothing to fight off infection.”
There is another terrifying aspect to this disease.
As well as living with the fear of potential relapse, some of the chemo drugs being used to treat Jane increase the risk of heart disease and cause secondary cancer, neuro-cognitive issues and behavioural issues.
“We don’t know if it’s coming or what it will be, but we don’t have a choice, we have to save her life now and deal with the consequences later,” Kim says. “You’re just kind of waiting for the other shoe to drop, for things to take a turn, it’s not fun.” And while Jane will require a lot of follow-up assessment in the years to come, the tough little hero turns six on Aug. 12.
“She has everything she needs; I just want people to sign up for the bone marrow registry or donate blood,” Kim says, noting she is grateful for the community’s support throughout the ordeal.
If you can’t donate but would like to help Jane celebrate, you can take birthday cards to the Salmar Grand Theatre where manager Daila Duford will make sure they get to their destination.