Where do we go from here?

She wakes to the sounds outside her room signifying the start of a new day.    It won’t be light for a few hours but the demands of her daily activities start early.    She says a quick prayer of thanks for a restful few hours sleep and then rolls out of bed to head to the bathroom, making sure not to dislodge any tubes from her ever present companion “IV-y”.    It could be a good day, no chemo or radiation today, just the usual tests, probes, blood samples, and medications.   If all goes well the side effects will be minimal and the nausea and pain will be manageable.    She settles back into bed already feeling like she has just come from a spinning class.    The nurses arrive to take blood, give meds and provide what comfort they can.     She puts on a scarf where her red curls use to be just in case she has visitors today.  No amount of makeup can fix the hollowness in her face nor does she have the energy to try.  Breakfast is next, not that there is much of an appetite.    She would give anything for a meal that doesn’t taste like chemo flavored prison food, a good night’s sleep in her own bed and just an hour outside in the fresh air.    But this is her life now, has been for the last few months and will be for months to come.    The doctors are hopeful so she knows she needs to be too but there are days it just seems to be too much.

If you would, I’d ask you to take a moment and try to imagine this is you.  

Now imagine it’s not you but your 6-year-old son or daughter.    You have to stand by and watch them deal with the day to day treatments and pain while they ask you questions like “why is this happening to me?”,  “when can I go home?”,  “am I going to die?”.     Ripped away from their normal life they now spend more time with doctors and nurses than with their family and friends.    School, playgrounds, and vacations have been replaced with needles, nausea and loneliness.   At this age, a month of this seems like forever, 6 months, a lifetime.  They’re scared but  they try not to show it, primarily for your sake.     

You do your best to be there every day to comfort and reassure them.   You watch and cringe as they are poked and prodded and your child moans and screams in pain.    Your heart is breaking but you hide the tears, you have to be strong for them.  It breaks again when you have to leave but life goes on outside the hospital room despite your efforts to make it stop.    Your other children need you, bills and insurance have to be addressed, and there are the mundane but necessary tasks such as shopping and meals.   Your long commutes to the hospital are the only times to yourself and usually that is spent talking to doctors, updating family or just breaking down in tears.    Fear is your constant companion. You don’t sleep so much as collapse from exhaustion.

Every day 46 children are diagnosed with cancer and the average age is 6 (stats from Curesearch).   40-50% of the cases are either Brain Cancer or Leukemia.   While survival rates have improved dramatically from 10%  40 years ago, we still lose 1 in every 7- 8 children diagnosed.  

I suspect some of you are sorry you even clicked on the link to this blog.  I can appreciate that; it wasn’t easy to write and certainly hasn’t been easy hearing and reading the heartrending stories during my research.   But I wanted to give you a feel for why I am moving the focus of Help in the Nick of Time to helping families dealing with pediatric cancer.    

Many of you have generously supported Help in the Nick of Time and my marathon efforts over the last 8 years and for that I will be forever grateful.   We have helped a number of families and organizations over the years with financial support but without a specific focus on any one area.   I believe everything happens for a reason and I’d like to believe that my bout with cancer was a 2x4 up the side of the head to focus my efforts on helping families struggling with the challenges of pediatric cancer.   I don’t know what the prospects will be for me to get back to running Boston but it is certainly a goal of mine to try (I actually jogged a mile the other day).    But alongside of my marathon efforts I will be spending time helping organizations that are focused on assisting pediatric cancer families.   I hope you will join me by continuing to support Help in the Nick of Time and I will keep you updated on activities through this blog and the website.

Oh yeah…in terms of my health, things are progressing.  Blood stats are improving although some of them have a way to go to get back to normal.  The hair is coming back and my appetite is definitely back to normal (and then some).     The last bone marrow biopsy in August came back clean and we head in for another one in a couple of weeks.  That will be the routine for the next 2 years with quarterly biopsies and monthly blood tests in between.  If all goes well during that period, the chance of reoccurrence drops substantially from the current 40%.

As always, thanks for all the support and please send feedback, it is always welcome.

PS...the picture above is of Kate Rubins on the International Space Station.    The space suit she is wearing is called  “COURAGE” .   It was painted  by pediatric cancer patients at the University of Texas MD Anderson Cancer Center in Houston, Texas.   You can read about it at https://energycommerce.house.gov/news-center/news/gi-normous-inspiration-curesnow-spacesuit-painted-pediatric-cancer-patients-debuts