A day in the life of Tommy

Below is an email sent to our PMC team by Maria, Tommy’s mother.  Tommy is Team Crank’s Pedal Partner.
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Team Crank,
First I want to thank you for riding for all the patients at Dana Farber but especially for riding for Tommy. As most of you may know, we will not be at the water stop, tommy will be having his first MRI off treatment… Of course he is still in treatment for leukemia but off treatment for one of his brain tumors. I wanted to share what our morning will be like in case you glance at your watch and need some motivation. I’ll also share the names of some of Tommy’s fellow BT friends who have PMC team in case you run into them:
6:30AM: have a quick breakfast, likely some scrambled eggs, Tommy’s new favorite.
7:00am: get dressed and start getting ready to go. Find a DVD for Tommy to listen to while in the MRI, he can not watch a movie since they scan his eyes.
7:30 say bye to Tommy’s siblings and dad and get in the car. Start playing the alphabet game( looking for all the letters on signs, cars, etc)
9AM: arrive at Children’s Hospital Boston, go to second floor and check in.
9:10: we both put on Johnnies and head into the MRI room, the have us go in front of a metal detector to be sure we are clear to enter.
9:12 tommy lays down on the special bed and is aligned perfectly. They put snug fitting headphone on tommy and hand him an inflated ball that he can squeeze if he needs help. A mask is snapped into place to prevent him from moving. I am handed ear plugs. The nurses/techs tell tommy to keep absolutely still, keep his eyes closed and then they walk out. I hold Tommy’s leg, his whole body is inside the scanner, I reassure him that I am right there, of I squeeze his leg, it means I am saying “I love you”. I squeeze it a lot.
9:15 for the next 45 minutes to an hour+ I pray, I let silent tears fall as I watch my little boy staying as still as possible. Sometimes with silent tears of his own, other times he’s trying to fight laughter at the movie he is listening to. More often the later but the longer it takes, the more difficult it becomes.
10-10:30am: the tech and nurse come in and put an IV in Tommy’s hand or arm. Tommy can’t watch since he is laying down and still snapped into place. They inject contrast and he goes back in for more pictures. Usually another 20 minutes. (this day, it was actually a lot longer)
12pm: Tommy is finished, they check in with the radiologist/doctor to see if they need more pictures, hopefully we are done. They take the IV out and send us home.
1:30pm we get home and are exhausted but glad it is over. Now we wait for results. We have brain tumor clinic on Wednesday but I can often email his oncologist on Monday to have them sooner. I tend to wait until we go in.
I promised Tommy I’d take him and his sibs to Chuck’E Cheese after the MRI so we will likely be there after lunch.
Some of our brain tumor friends who are riding are:
Evan Hecker with Team Nathanisms we met his family at Camp Sunshine, Nathan is 5, has the same tumor as Tommy. He’s adorable and has twin little brothers.
Alice Williams with Team Lexie, also met at Camp, Lexie is 16, she will never drive because of vision loss but they thought of something clever to tell everyone who brings it up… ” I don’t drive, I have a chauffeur!” So clever. Lexie is an amazing kid, she has published two books including, Lexie’s Gift, a cookbook for cancer fighters.
Ken Gainey who was instrumental in changing the odds of kids with these tumors. He and another family started the PLGA research fund at Dana Farber and the PLGA foundation desperate from dfci. Amazing dad.
All three are parents with great teams. I know there are more but I’ve written a book already!!!
Thank you- ride on- and thank you some more.
With love,
Maria Joffrion and family.

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