Below is the contents of an email we sent to friends and family on August 26. This is before Nadia had a diagnosis, and before we were told that they would prefer, if possible, to keep Nadia from having a blood or platelet transfusion before the bone marrow transplant, because additional blood products could harm the outcome of the transplant.
Nadia update from Aug 26: She is doing well, and does not seem sick at all. But the bloodwork and bone marrow samples (and easy bruising) say otherwise. There are still a lot of unknowns, but so far it looks like Nadia is having some sort of bone marrow failure syndrome. Specifically, her platelet count is low and it is only a matter of time before the white and red blood cells follow. They have not narrowed it down precisely yet, but almost everything the do have on the list has the same treatment – bone marrow stem cell transplant. If they can better determine the cause they can better design the chemo that precedes the transplant.
They might send us home soon.
Because Nadia’s platelets are so low, there is a risk she could bleed into her brain spontaneously (unlikely but more likely than you or I), or after a severe enough trauma (likely – “no jumping on trampolines”). The more blood samples they take, the lower her platelet count has become. This is probably caused by her low platelet production ability (hence the low original count) and because they keep taking more blood from her (vampires!). They think they will soon have all the blood they need, so they will then give her a platelet transfusion and send us back to Kelowna while they finalize blood testing (samples are being sent all over North America to special labs, and this takes time) and look for a bone marrow stem cell match from an unrelated donor. I am guessing Nadia will need regular (weekly??) platelet transfusions until then. The reason they have not given her a transfusion yet is because they want to take as many blood samples as they can of her own blood in order to do the testing.
When it comes to bone marrow stem cells, Nadia is pretty much exactly 1/2 me and 1/2 Tara. So neither of us will be a match. The best option is a sibling, which she does not have. The other option is to take certain markers from her bone marrow sample and compare it to various international registries. We have had many people offer to be tested to see if they can help Nadia. Thank you all! But unfortunately it is very unlikely someone we know will be a match. BUT, I encourage everyone who can to enrol in the One Match stem cell and marrow network. They are keen on males between 17 and 35. It is a real challenge to get people into the registry because by the time most people experience an event that someone they care about (or themselves) needs a bone marrow transplant, they are too old to give. Even if you don’t qualify, please encourage those that do. You or they could end up helping a little girl just like Nadia. Entering the registry is easy. Fill out a form and if you qualify they will send you a kit so that you can take a cheek swab. That’s it. The One Match program is administered through Canadian Blood Services and they are included in the international network. You will only actually give bone marrow if and when they find a match (which, unfortunately, is unlikely). Here is the link.
http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/onematch?OpenDocument&CloseMenu
Of course, another way to help Nadia and people like her who need blood transfusions is to donate blood. http://www.blood.ca/
So it looks like we might be heading back to Kelowna soon. It also looks likely Nadia will need to be back in Vancouver for chemo, transplant, and recovery. It could take months. There is still a lot we don’t know.
