happy sixth birthday, reecie!

Today is Reece’s sixth birthday!  One might think that this must be a sad day for us, but really I don’t feel that way about the day in general.  Certainly, we miss him (and have pangs of sadness) and it isn’t easy to not have him here.  It is strange to know that the weekend would have been entirely different had he been here.  But this is a great day in our lives!  I want us to think of it that way and I want our other children to remember it that way; it is Reece’s birthday and I want to look forward to the day versus dreading it.  There is no way to anticipate how one will feel on a day like today, but I can tell you that if nothing else, I feel blessed.  I’m blessed to know Reece, to be his mom, to continue to learn life lessons from his time here, to know in a deeply settled way that he is fully healed and more alive than ever, and to have the assurance that I will see him again.  Some March 24 in the future, I will celebrate with him again, in person.  Until then, we will do our best on this day to honor his life that he lived here and also to celebrate the life that he lives in Heaven. 

Here are some fun pics to celebrate Reece:

Speaking of honoring Reece, we have some clarity on how we feel we should do so.  I read two great articles this week.  I highly recommend you read them–if for nothing else than to understand the background to my post today.  One article was posted on the Children’s Cancer Research Fund page and can be found here.  Written by the mom of a childhood cancer survivor, the article briefly touches on the thought that while her child is disease-free right now, she will never consider him cured.   This is something that Terry and I have discussed at length since Reece passed away.  It took me a long time to understand and accept that Reece probably never would have been “cured” from his disease.  MDS is an insidious, pre-cancerous disease with a high relapse rate.  As time progressed during his transplant, we came to realize that the doctors had a heightened concern for relapse due to his MDS diagnosis, thus begging the need for the study Reece participated in that looks at the relapse rate of high-risk pediatric cancer between one-cord and two-cord stem cell transplants.  We both discovered after Reece passed away that neither of us truly believed he would live a long life, well into adulthood.  After all, one is considered a “long-term survivor” after five years post-transplant.  That puts Reece just shy of 10 years old–10 still seems like a shortened life to me.  I remember the first meeting we had at Children’s Hospital when the hematologist first told us he suspected MDS was his diagnosis.  My immediate responses were something like, “Can we treat it?” and “Can he go on to live a full and healthy life?”  The answers were, “Only with BMT can it be treated,” and a very hesitant “yes” to living a long life.  I now understand the hesitancy.  I was so naive to what we were about to walk into–the doctor’s approach to our questions was appropriate.  He was hesitant because of the risks associated with transplant, including the many possible complications, he was hesitant because of the long-term effects to the quality of the life he may end up leading, and he was hesitant because transplants don’t always work–the disease can come back or the new blood may not function at all.  It is no easy task to switch your blood with some else’s.  Aside from the transplant, consider that all of these routine things that we fight every day–colds, influenza, chicken pox, etc–never really leave your system.  These invaders don’t go away, rather our bodies learn how to deal with them and keep them at bay.  I’m convinced it is the same with cancers.  After all, we all have defective cells in our body–regular cells that go awry.  It is a matter of them getting out of control when they become a problem and are considered cancer.  Reece’s bone marrow was, at one point, totally normal.  But eventually, the cells with monosomy 7 took over–thus the MDS diagnosis.  My point is, we all face life-threatening diseases every day.  We don’t think of them that way, because of our handy-dandy immune systems (that are actually pretty badass when you consider what they do).  But–at some point–we will physically be overpowered by something.  In reading this article, it was refreshing to hear another parent–a parent whose child is disease-free for now–discuss this openly.  She also discusses the complications that have come along with survivorship and references a second article that is longer and more robust in details.  To read the second article, click here.

This second article really hit home on many topics for me.  It summarized a lot of the concerns that we had to grapple with throughout our journey with Reece’s illness.  These concerns include childhood cancer survivors having a significant increase in likelihood for other cancers later in life, becoming your child’s advocate in such an intense and confusing subject matter, long-term side effects (like infertility and problems with cognitive functioning), and the reality that childhood cancers lack much research in many of these areas.  She also refreshingly discusses the obvious topic that no one wants to bring up–that even with cancers that have high rates of survival, there are still children who will not survive.  An 80% survival rate sounds encouraging (for lack of a better term) until you find yourself or your child in the other 20%.  And, when it is your own child, 20%–even 5%–sounds like a big number. 

One of the biggest takeaways that this article highlights is that childhood cancer is not the same as adult cancer, just occurring in younger people.  If you think about it, years of abuse to our bodies and years of abnormalities in bodies lend itself to higher rates of cancer in adults.  What about children–even babies in utero–who deal with this?  It’s not the same disease as when it is found in adults and often it behaves differently.  AND–it is a quality of life issue for a child; these types of treatments will greatly impact their entire lives.  It is an enormously heavy reality to think of when it is your own child and you are considering how to treat them and give them the best possible outcome for a healthy life.

Like most people, before we went through Reece’s ordeal, I assumed that there was a lot of research out there on childhood cancer.  The reality is, there is not as much as you’d think.  If you consider how rare childhood cancer is–some more than others–you realize that conducting studies is quite difficult from a funding perspective and from a participant pool perspective.  The study Reece was in was a five-year study and there was a very small pool of kids from across the nation participating.  Many of the decisions we made about Reece’s transplant were based on adult research, which isn’t necessarily the most accurate information when you consider the many differences between adults and children.  Reece had so many complications–things happened that likely could be prevented or greatly minimized with further research.  Finding ways to administer chemo/radiation differently, preventing GVHD, understanding what types of transplant work the best–these are just a few areas that would have helped Reece out tremendously–and that is only specific to him.  There are so many types of cancer that have such little research dedicated to them. 

I’ve struggled with knowing where we should direct our efforts in supporting research or finding something to do in Reece’s honor considering the complex nature of Reece’s situation.  Recently, however, Terry and I have discussed that it makes sense to do a monetary donation to some organization in Reece’s honor, every year on his birthday.  We still have his memorial money in a savings account and we would like to give it away every year on his birthday–in honor of him.  Perhaps we will even do fundraising to support our efforts in giving in future years.  But for now, we are going to use money that was donated in his memory.  This year, we feel it is appropriate to give to Children’s Cancer Research Fund.  Reece’s doctors work closely with this organization to help gain funding and support for further research.  We feel that this research will help future children who will be facing the same challenges that Reece faced.  We support an organization that strives to understand more about pediatric cancer, including pediatric MDS, to hopefully minimize the amount of issues that Reece faced throughout transplant, minimize the long-term complications of transplant survivors and cancer survivors, and strive to eliminate the need for children to go through the BMT process.  Giving to this organization, this year, seems like the right thing to do to honor Reece.

While I know he isn’t reading this blog, it feels entirely wrong to end this post without saying:

Happy 6th Birthday, Reecie!!!  I love you, I miss you, and I eagerly await celebrating with you again!

“The LORD your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.”  Zephaniah 3:17