Back to Reality

With Ryan's bone marrow donor tests complete, I drove him back to Connecticut Friday.  It felt a little bit like I was transporting a secret antidote in a James Bond film.  Careful not to damage the package, I took extra precautions to keep him safe.  Now we just need to keep Ryan healthy and virus free for the next several weeks while we approach transplant - also known as day 0.  It was a long drive through some  intense storms, but it was nice to spend some one on one time with him.


Carter and Cole in the Park



It was also a reminder that Ryan is at such an impressionable age and made me sad that I can't be there more for him right now.  When I told him that I was proud of him for donating his marrow to Cole, he said "Did I have a choice"?  No buddy, you really don't.    



The trip home also allowed us to watch my daughter Carter compete in the state gymnastics meet.  Watching her compete, it's clear that she is distracted by everything going on right now and not having having her mom there didn't make it any easier. 

I was able to bring Carter back with me on my return drive from Connecticut to Cincinnati.  She was happy to miss a few days of school and Cole was thrilled to have some company.  He remains relatively healthy heading into chemo, which officially begins next week.  He's a little beat up from the testing, has some swollen nodes and some white blood cells in his spinal fluid, but it doesn't appear to be related to the hot spot they found last week.  The white blood cells also don't show cancerous cells and don't show signs of active HLH, which is a good sign.  He's getting another lumbar puncture this morning to see if the white blood cells have decreased.  The rest of the week will focus on internal testing of his lungs, stomach and other internal organs.   

We had to sign permission documents yesterday which were the scariest documents any parent can ever read.  They outlined  in detail what lies ahead and mentioned the words death and fatality no less than 20 times.  While the weekend home was a nice distraction, it's back to reality here in Cincinnati.  The doctors are encouraged that he's heading into chemo healthy and hope to have him home by the holidays.  



Let's Do This

Cole has nearly finished his first week of pretty intense physical tests, scans, poking and prodding. He's been an absolute champ, not needing sedation for his MRIs. The nurses have been amazed at his ability to lie still relative to other 5 year olds. I explained that Cole's fear of needles is a great motivator.

Yesterday was a particularly difficult day. One of his scans found an abnormality on his spine, which the doctors thought may be a tumor. That would be devastating this early on in treatment, and would require a much more intensive course of action, significantly reducing his odds. Ultimately, our doctor declared it a "hot spot" and found no damage in the bone, leading her to believe it's not a malignant tumor. I've learned there are code words, looks and phrases used by doctors and nurses. Some to communicate with each other, some to protect themselves and some to prepare families for worst case scenarios. I'm hopeful that this instance was just a doctor being overly cautious.

I also experienced true helplessness yesterday as I watched Cole get a brain scan. He was strapped to an MRI machine with cords attached to nearly every inch of his body. As he entered the MRI tube, I could no longer hold his hand or speak to him. He was on his own and I couldnt do anything to help. Fortunately, he was a champ.

One nurse underscored how important attitude is during this process. For the patient and the family. Cole remains incredibly positive and focused on one mission - getting well. Before each procedure, he says "let's do this". and often reminds everyone to "man up" when theyre upset. Like his disease, he's one in a million.

Saying Goodbye to CT, Headed to Cincy Children's.

The Journey Begins

After months of seemingly endless testing, today begins the path toward treatment for Cole.  Treatment starts by heading to our new home at Cincinnatti Childen's Hospital for a week of intense physical testing to insure Cole is well enough to proceed.   Following testing will  be several weeks of chemotherapy that will kill his current bone marrow to make way for new, healthy marrow from his brother Ryan.

It was difficult watching my wife say goodbye to my 10 year old daughter, knowing that they would likely not see each other for 6 months or more.  Once Cole starts treatment, he can't have outside visitors who may carry infections and viruses.  It was even more difficult knowing that my family would never be the same once I started the car and drove away with Cole, Ryan and my wife while my daughter waved goodbye.

While it was easy to ask "Why him?" after he first got diagnosed, it's just as easy to ask "Why not him?"  Though the odds were in his favor never to get this disease, it turns out that no amount of money, love, or preparation can prevent it.  HLH strikes only one out of every one million children.  Perhaps we should've played the lottery the same day we got the news.   It's a genetic mutation passed on from each of the parents.  In fact, even more rare is that Cole's mutations live on two separate genes - something the doctor, the world's leading expert in HLH, said she'd seen only two other times in her career.  Maybe two lottery tickets were in order.

I recall speaking with the doctor when she first diagnosed Cole.  After she began explaining the disease, I remember hearing the word "genetic" echo in my head as my heart raced, realizing that I had two other children from the same gene pool who must now also be tested.

In many ways, despite the rarity and severity of the disease, I consider us lucky.  Lucky because my two other children ended up testing negative, lucky because we were able to find a donor in my older son and lucky because Cole has been able to work himself into a natural state of remission heading into chemotherapy.  I'm hopeful that this luck continues to work in his favor throughout treatment.  That would be the only lottery I care to win right now.

Meet Cole

Our 5 yr old son, Cole, came into this world with an opinion about everything. From politics to fashion, he's not afraid to share his opinions with anyone willing, or unwilling to listen.

Cole is fiercely independent, funny, smart and tough both physically and mentally. Now, Cole's toughness, and ours, will be tested in the most challenging battle any of us has ever faced.

In the Fall of 2011, Cole was diagnosed with a very rare blood disease called HLH (Hemophagacytic Lympho Histiocytosis).   The disease prevents his blood from regulating in the fight against infection.  Without the ability to regulate, his blood seeks other things to attack, including his liver, spleen and other internal organs.  Ultimately, it kills its host unless treated.  Our little 5 year old host who once wore a Batman costume for 6 months straight.

This is a story of our long journey with our son's rare disease. A disease with minimal information, virtually no funding and a staggering mortality rate.   In many ways, it may have been easier to deal with a known disease, where the odds are more predictable, support groups exist, friends understand the situation, research is abundant and the treatment plan is well documented. 

It's an incredibly complex disease to diagnose and treat. So far, the physical journey has led us from our home in Connecticut all the way to Cincinnati, OH.  But I expect the emotional journey will be much longer and infinitely more difficult. 

We are blessed to have such a strong network of friends, family and co-workers providing support and love as we face this fight. As we enter this journey, I'm saddened by the unjustness of those families without the support or financial means to offer their children a fair fight.  This blog is an appreciation of your support, acknowledgement of your love, an attempt to keep everyone informed and a dose of distractive therapy in our journey.