Sunday, March 29, 2015

I have another son

We all live with cancer in this house.

Alex, my 17 year old,  has been raised in a home where cancer visits with alarming frequency.  He has witnessed many things that most adults cannot even imagine.  I don't often write about him, and have tried to offer him space to be a normal teenager, independent of this oncology nonsense.  I am certain that I have failed, but I am pretty sure that he knows that I have tried.

Alex is extraordinarily independent, partially by necessity as Dan and I have been off 'cancering' with the other kids.  But in part, this autonomy is achieved by design, because our job is to make our children self sufficient.  Alex is driven, choosing an academic course load filled with AP classes, joining clubs, marching band, and varsity athletics.  Sometimes I feel like we need to tether him to us, he is so ready to fly.

As he finishes his junior year, Alex is preparing for college, although we have yet to visit any.  Demonstrating initiative and leadership, he began plans for a service project some time ago.  He is organizing a t-shirt sale at his high school, raising funds for Kick-It, which supports pediatric cancer research. His idea is an extension of a program begun at the middle school.  Alex wanted to build on this heritage of community and service.  And lets face it, pediatric cancer research is not beneficial in any sort of theoretical way for us.  We regularly engage with researchers as a practical matter at the RamerNation.

Things were going along swimmingly for Alex, until Brent was diagnosed with his third cancer in the midst of this project. I had hoped to offer Alex some help and guidance, but found that I was preoccupied with doctors, tests, and organizing what I could, in advance of the chaos to come.  

Alex moved forward with his sale with guidance from Dan, as well as some teachers from school.  The Ramers also moved forward, testing for a match and waiting for results, which is excruciating, when so much hangs in the balance.

On Wednesday, Alex was blessedly, most thankfully, found to be a perfect match for Brent.  In this case, blood is thicker than water, because a full sibling is the best accepted donor.  

Alex has just become an active participant, rather than an intimate spectator.  He will undergo more testing. He will be poked and prodded as his siblings have been.  He will spend time at the hospital.  He will spend time in the OR.  

As part of the Kick It program, the focus this year is on sibling impact.  Lauren will speak to her peers at the middle school about what it is like to witness her brother's struggle. She will also share how this has impacted Olivia and Alex.  In the very moment that she gives her speech, Brent will be in the midst of the chemotherapy regimen that will kill off his own marrow, making space for Alex's stem cells, which we pray will be accepted and grow.  She will no doubt be thinking of this process, of the importance of family.

Alex is following through on his t-shirt sale, taking orders this week, profits to benefit pediatric cancer research, hopefully finding treatments that are less toxic and less likely to cause subsequent cancers like this latest one for Brent.  I am enormously proud of the person that he is becoming.

His service project at the high school will finish, just as he heads to the OR, beginning a service project of a different kind.  We welcome your prayers.

Donations to Kick-It via Team RamerNation may be made here:  

Alex participated with other siblings of cancer patients in a video for Flashes of Hope last year:

Sunday, March 22, 2015

Cancer Nesting

I had finished a blog for Living LFS about how we watch the shadows, and wonder about the sharks, always battling those closest to the boat.  I thought that I would step up my game a bit, and include a stock photo of some sharks with the post, which would require tech back up from my husband or kids.

The phone rang as Dan got home, our oncologist calling with the results of the next phase of the pathology.  Suddenly, it became clear that my kid had slipped into the water. Brent is now swimming with the sharks.  The best chance that we have, is for one of my other children to help him back into the boat. He needs a bone marrow transplant to cure his latest cancer.

They are all children.

I have been busy for the past week on multiple fronts.

Medically, there was the trip on St. Patrick's Day for our family.  We went to the hospital to be tested, all hoping that one of us is the lucky Perfect Match, and can be a donor for Brent.  I saw many touching photos that day, of oncology nurses with shaved heads, raising money for pediatric cancer research via St. Baldrick's.

We had a meeting after tumor board with the transplant team, to learn about what is involved in the transplant process, which is daunting all on its own.  It also happens to be littered with potential for complications.

I have been doing the things that I know, as a veteran of four previous tours of cancer duty:  Talking to folks at each of the schools; Contacting my social worker, my case managers, the insurance company;  Notifying those who I made commitments to, knowing that I will not be able to follow through; Canceling my few cleaning clients, which had been a feeble attempt at finding work; Cutting back on interests outside of my family.  I did this all understanding that it is necessary, but not without regrets. It was not always accomplished without tears.

I reached out to some researchers that I know.  I am using every tool at my disposal.  I am following the breadcrumbs that God puts in my path.  I pray.  A lot.

I have not yet been able to open the binder we recieved entitled "A guide to your child's transplant."  My volunteer work at the hospital, which I am forced to leave behind, asked for parent input in creating guides just like this.

Over the weekend, as Brent went to the Cav's game courtesy of a dear friend, and spent time with his buddies, I cleaned, organized, and tidied...both my house and my life. Like at the end of my pregnancies, I need to have things in order before we become indisposed. I am cancer nesting.

I have a quiet in me that I cannot explain, but one that am grateful for.  We wait to learn of a match.

We pray.

We wait.

We pray some more.