Memorial Day Update

Greenough Park in the Autumn

Between internet connectivity issues and laptop problems, I’ve been out of touch for two weeks. I’m connected finally, and happy to report that the only problems in the Merrill household are technical ones.

I accompanied Roger to his doctor appointment last week for the first time in two months. I had been feeling strangely disconnected from that facet of life too, after being so intimately involved for so long. Roger is doing a fine job of taking care of himself, taking himself to doctor appointments and managing his own medications. I’m just “arm candy” to him now. (wink)

Roger looks thin, but healthy. His hair has grown back. His weight is holding steady and he has a good appetite. His blood counts and chemistries are excellent week after week. His energy increases continually. Gradually, he is returning to work, meeting with clients one-on-one after checking to make sure they haven’t got a cold. As we work around the house doing our weekend chores, I notice that he rarely takes rest breaks now and is able to keep busy the whole day without adverse effects. He walks Sophie through Greenough Park every day – about a 2 mile loop. He is taking on more of the household chores, and is even able to mow the lawn now, which is really good news for me!

Life is good if not quite back to normal. Roger visits Dr. Beatty’s office at Montana Cancer Specialists twice a week. Each Monday he has blood drawn and sent to the Mayo clinic for testing. On Fridays he meets with his doctor to get the results. We’re lucky that Missoula is such a small town that the doctor’s office is only five minutes from home! At least he doesn't have to spend much time in the car commuting to and from.

Roger still has to follow some rules with regard to contamination.  He's such a rebel, he wants to break all the rules.  But I am the bacteria police, and I'm on his case.

All the IV medications have been discontinued or replaced with oral medications.  We were disappointed last week to be told that Roger won’t get his central line taken out until November. Because he’s at the upper end of the age range for transplants, they are being extra cautious. I guess that makes sense. We attached too much importance to it – as if removal of the line were a milestone. In fact, in the grand scheme of things, it doesn't matter. We adjust our thinking and move on.

What’s next? Roger will continue to check in with the doctor regularly throughout the summer and fall. In November we’ll make a trip to the Bone Marrow Transplant Clinic in Salt Lake for a repeat of all the tests he had prior to the transplant. We look forward to a little family reunion then, another chance to thank his brother/donor and we especially look forward to thanking the transplant team at LDS Hospital for a job well-done.

Life is good.

Taylor Pays It Forward

Our daughter Taylor decided a few months ago to become a bone marrow donor.  Roger and I are so proud of her. 

Taylor Tallas, Chilliwack, B.C., Canada

Candi:  Becoming a bone marrow donor seems like a big step. Why did you make that decision?

Taylor:  It’s sad, and a little embarrassing that it takes something so serious to rock your world before your eyes are opened.  We are all so busy with our day-to-day lives, and don’t give it a second thought… until it effects you or someone you love.  It’s something that I could have and should have done long ago, but now I feel it more than ever…Time to pay it forward!

Candi:  Why would you want to donate to someone you don’t even know?

Taylor:  I had such a feeling of helplessness when Roger was sick, I hope that in some way, I can help ease that feeling for another family.

Candi: Have you already been matched with someone who needs a transplant?

Taylor:  Not yet, and I may never be, but somehow, being in the registry, I feel a little less helpless.

Candi:  What does a donor have to go through?  
Taylor:  A sample of the registrant's DNA is taken (with a cheek swab) and used to identify a number of Human Leukocyte Antigens (HLA).  The information is stored in the donor database for patient searches.  HLA’s are genetic markers that are inherited from our parents.  A number of antigens have been identified as important when matching donor and patient. Obviously, the closer the match between the patient and donor, the better the outcome will be for the patient. The patient's transplant physician will look first for a compatible donor in the patient's family and will arrange for testing of appropriate relatives. In general, the most likely family members to match will be the siblings. However, chances of finding a compatible donor in the family are less than 30%.  If no suitable relative is found, a request is made to the Stem Cell and Marrow Network to search for a donor throughout the US and Canada as well as all international donor registries.

Candi:  How are bone marrow cells actually collected?
Taylor:  There are two methods.  In the first, called a stimulated peripheral blood stem cell donation, a part of the donor’s circulating blood is taken. To increase the number of stem cells in the blood, the donor receives injections of a drug called a granulocyte colony stimulating factor (G-CSF) every day for four or five days. The stem cells are then collected using a procedure called apheresis where the blood is drawn, the stem cells separated out, and the remaining blood is returned back into the donor’s body. This is a non-surgical procedure.  Apheresis is commonly used in a variety of situations – for example, plasma donors may undergo apheresis up to 52 times a year!  

The second method is a bone marrow stem cell donation.  This is a surgical procedure performed under anesthesia. A syringe and hollow needle is used to withdraw liquid marrow from the back of the donor’s pelvic bones. The procedure usually takes 45-90 minutes and it collects blood along with the stem cells from the bone marrow.

Candi:  When will you donate? 
Taylor:  As soon as I am a match. 

Candi:  How does it make you feel knowing that a call could come at any time, or perhaps never? 
Taylor:  I’ve put it out of my head for now.  I am on the registry, and that’s all that I can do from my end.  If I am called, I will be more than happy to donate. On the flip side, if I am never called, I’ve got to believe that someone didn’t go without the stem cells they needed, but they found a match geographically closer. 

Candi:  How can other people find out about becoming a donor? 
Taylor:  I wasn’t sure where to look, so I Googled “bone marrow donor” and found these two websites, one Canadian and one American, either of which will get you the info that you need on how to become a donor and provide more details on the process of donation.* 
*Candi's note:  Blogger is not behaving itself, so I am not able to add the links for bonemarrow (.org) and onematch (.ca), even as plain text.  I'll add them when I can, and you can use them as search terms in Google.

Pick Me!

Becky's in the bone marrow registry.

I feel honored and privileged to contribute to The Bone Marrow Boogie blog!  I consider this to be one of the most exceptional and inspirational blogs that I have encountered.  I commend Candi for the organization, execution and downright amazing creativity it took to make it so top-notch.

Candi asked me to write about my decision to become a bone marrow donor.  Clearly, the impetus for doing so was Roger.  A man whom I’ve never met but feel a strong connection with due to all the praying, worrying and reading the blog.  When I first learned of his need my immediate response was….pick me….I want to donate!  Just knowing that I could positively change the course of someone’s life and those of their loved ones motivated me to endure the prescribed procedure.   Thankfully for him he had access to DNA that aligned very nicely with his genetics – his brother.  Since I couldn’t be a donor to Roger I decided I wanted to be a donor for someone else.  The process to get registered for the national bone marrow registry is incredibly simple – EVERYONE should do it!  Below is the website address to register as a willing donor.  Shortly after that you will get a kit in the mail that includes three big Q-tips.  Swab the inside of your cheek and mail it back.  That’s it!

Your odds of becoming an actual donor to someone outside of your genetic family are 1 in 540.  If you get called, the procedure is routine and minor.  Simply put, the donor is placed under anesthesia and a needle is inserted into the back of the pelvic area where bone marrow is removed.  You wake up, you might feel slight discomfort, you go about your normal business, you alter the course of someone else’s life!  It’s a great deal – after all to give is to get!  

http://www.marrow.org/

Beckie Christiaens