It is amazing how time can travel. One moment, you are in the darkest, deepest trenches and you are grasping for anyone or anything to help pull you out. The next moment, you turn around and you cannot even grab the = of the moment just passed. So, that is where we find ourselves: One year clear. Let me say it again (just because it sounds so good and reads so well): One year clear. Go ahead, Team Mac. Give yourself a pat on the back, a high-five to your fellow teammate, and a “thank God” exhale. Honestly, there were moments we thought we would never see this day. There were moments (or days) spent in the hospital and doctors offices that appeared to have no end in sight. The sleepless nights, the endless tears, and the slow emptying of our entire emotional and physical structure steeped slowly, becoming an unwelcome house guest.
We can remember the exact moment when we were told Mac would be receiving chemotherapy for the minimum of twelves months. Minimum. Twelve months. One year. 365 days of “is this really our life? Is this our normal? How do people make it out to the other side??” Only now that we have survived the troubled waters do we realize we are the fortunate ones. Mac’s treatment was changed while on maintenance chemotherapy due to new LCH involvement but somehow we still finished within the year. Other families were (are) not so lucky. They find themselves being on treatment for years or worse, losing their team captain. We never questioned “why us” or “this isn’t fair” during the moment, but now I do (I cannot speak for my husband). As I look at my (mostly) healthy rambunctious two-year-old-soon-to-be-three-year-old, I question, “why were we chosen to be the fortunate ones?” Who am I kidding? We were not chosen; we are lucky. We are lucky to have a God so loving and powerful to take care of our son. While our government speaks of our children being a priority, their action…wait. Let me reword this: Their inaction, proves differently. Only 4% of NCI funding goes to pediatric cancer research. Is the number one killer of our children only worth 4%?!! Orphan diseases receive even less funding. It’s one thing to be a statistic. It’s a completely different animal to be a statistic without funding or support. Mac and his fellow warriors rely heavily on fundraising and private donations, most of which is raised through the Histiocytosis Association of America. Even a year after treatment, we will still randomly receive a card from The Histiocytosis Association letting us know that a donation was made in Mac’s honor. How humbling it is to know that someone out there loves our family enough not just to think of Mac but to support him where the government does not. Don’t worry. This will not be a government-bashing post. I will save that for another time (kidding—maybe).
What this will be is a post about our tough-tike who is so, so incredibly awesome. Yes, we may be biased but we are pretty sure we have a few supporters who may confirm our thoughts. I was just saying the other day that Mac is so awesome and he doesn’t even have a clue as to how amazing he has proven to be in his three short years. He has no idea how many people have prayed for him and cried over him. He will only hear but never truly understand the feeling that his father and I had when we had to contemplate canceling his 1st birthday cake because we didn’t know when / if he would be out of the hospital. He won’t know how our minds were sent reeling to thoughts such as “will we be buying a casket for his first birthday?” This is startling to me still—my heart literally skips a beat with the terror This is the harsh reality we were faced with just days before Mac’s first birthday. Consequently, every annual MRI (Mac currently has an MRI every 6 months) will be accompanied by these thoughts and these memories. Though it is extremely difficult, we will acknowledge these morbid, life-changing memories and train our minds and hearts to declare them simply as a hurdle that our “mighty warrior” defeated.
The main purpose of this post is to give hope to all the families who are finding themselves scouring the Internet for any and all information they can get regarding LCH (Langerhans Cell Histiocytosis) and other histio-related diseases. We want to let you know that it WILL end. What will not end is the loss of young lives until more effective treatments are implemented and a cure is found. What will continue is the fact families will struggle with the cost of treatment. What will prevail is that the histio community will pull together and show you support that transcends the financial burden LCH has laid upon you.
Know that you WILL come out the other side stronger and wiser than you could ever hope. The side you come out of may not be the side you want but know there is a God that has bigger plans for you than could not even begin to imagine. We truly believe that not one soul is lost in vain to this horrible, yet little-known disease. We believe we have experienced this trial for a greater purpose. We have resigned ourselves to the thought that we may never know the “why” of it all during our short time on this earth. We can only hope that Mac will witness the “why” in his lifetime but even this is not a guarantee. For now, may the purpose be through the lives we live and through the people we touch with our hands and words.
Your child’s strength will be the strength that you acknowledge but always know YOU are also a definition of strength. You will fight for them and every breath you take is for their well-being. There were times (and times still) where I feel like I am going mad / crazy. This is a traumatic life experience and its wake may not be felt until long after the treatments have ended. Never be ashamed of crying, screaming, being hopeless, being angry, confused, and seemingly living a life that is not yours. Always know that there are people who have walked in your footsteps and they are wanting to hold your hand and walk with you down this path, regardless of how scary and isolating it may seem. Know you are in the company of many great parents, grandparents, and other family members / caregivers who suffer from depression and PTSD (post-traumatic stress disorder). Don’t ever think, “that will never happen to me,” because I’m pretty sure, you never thought your kid would be diagnosed with LCH either. This is a post to let you know you need to equip yourself with knowledge and a side-order of stubbornness. When you get a “gut” feeling, PUSH and push hard. When you force a doctor for further explanation, examination, and testing, the best case scenario is you are wrong.
Keep HOPE in the front pocket of your heart. The hope that the days will get easier, the hope you and your child will get stronger, and never lose the hope that this disease will see its end and its day of having a cure has finally arrived. Always, always have hope.
As always, thanks for all the love Team Mac.
For more support for families who have or have had a family member suffer from a histio related disease, please go to https://www.facebook.com/groups/OurHistioFamily/
For all other things histio-related, please go to http://www.histio.org