It feels really surreal to have this day arrive. This is the type of thing that happens to other people’s children. Families you see in the news, on a Children’s Hospital Telethon, or maybe in a made for T.V. movie. Never would I have imagined it would happen to my child.
Eleven months ago, he was a healthy, active 4-year old starting swimming lessons and looking forward to a trip to his favorite place – the beach. With one phone call on a Monday night at 8:11 PM, that all changed. We received a call after a doctor’s visit for a minor cold and heard the words “There is something wrong with his bone marrow” and “You need to take him to the ER right away.”
If this would have happened 30 years ago, Ryan would have likely been dead within a matter of months. However, today, we can potentially cure bone marrow failure diseases, blood cancers, and other life-threatening illnesses. The cure is you. You potentially have living within your body, something that can save someone else’s life – a small amount of your bone marrow or stem cells.
Although Ryan’s donor is giving actual bone marrow, a majority of patients can now be cured with stem cells taken from a donor’s bloodstream, which means that donating is as easy and painless as donating blood. If you haven’t done so already, please consider joining the national bone marrow registry at http://bethematch.org/. It is as simple as providing some general information online, getting a kit in the mail, swabbing your mouth, and sending it back.
Each year nearly 18,000 people, might benefit from a potentially life-saving bone marrow transplant and 3,000 people in the
die each year while waiting for a bone marrow match. You might be someone’s
We don’t know much about Ryan’s donor at this point. We know he is a healthy 21-year old male with a B+ blood type. We can assume he is not from Europe because we didn’t have to sign a mandatory disclaimer for Mad Cow Disease that patients in the
have to sign if their donor is from Europe. We
also know that he is receiving “fresh” marrow as opposed to frozen, so we know
the donor is within a same-day flight distance. We suspect he is from the East
Coast because the marrow is scheduled to arrive late in the day. Other than
that, we may never know. However, I am hopeful he will be interested in meeting
us a year from now when the mandatory waiting period has expired.
Here is how things should play out today:
Ryan’s nausea and pain has been increasing, which is completely normal at this stage. In fact, it seems that every opportunity the team gets, they remind me that things will still get worse before they get better. They have started him on some morphine today and he is currently sleeping peacefully.
The donor bone marrow will be hand-couriered by a volunteer with the Be The Match organization, who will likely board a flight holding the marrow in one of those little red and white igloo coolers. The marrow is expected to arrive in
at 4:00 PM (I assume at SeaTac), and will then be delivered to the SCCA lab where
it will be processed. They have to remove any bone fragments and remove some of
the red blood cells because the donor is a different blood type than Ryan. It
will then be brought over to Seattle Children’s where they will double and
triple check to make sure everything matches. (The estimated time of arrival is
8:00-9:00 PM.) Then, the bag will be hung on Ryan’s IV pole and it will enter
his body similar to a blood transfusion. Many people think a bone marrow
transplant is a surgery, but it is not. The actual transplant is fairly
anti-climatic, other than being a really important milestone.
Please pray and have positive thoughts for Ryan and his donor as this is a big day for both of them!
Note: The beach pictures were taken only a few days after diagnosis, at Ryan’s favorite place –