I haven’t posted an update in awhile because we have been spending every spare minute either with Tristan at home or purging house to get ready for his transplant. We are still waiting to hear about a match from the transplant team 🤞. Tentative date for going back to hospital is 10/17. He’s headed to clinic today for transfusion. When he gets chemo it causes his blood counts to go low. This leads to fatigue & shortness of breath. The chemo itself makes him nauseous. He has been getting cycles of 4 days of iv chemo & oral at home (luckily I can give it to him).
He wound up hospitalized two weeks ago with a kidney stone which was no picnic.
In the mean time we are checking off bucket list items of thing's he wants to do. Sunday we took him to see Blue Man Group! The Charles Playhouse was AMAZING and comped us handicapped accessible seats so we could safely & easily get him in & out. He loved it! My amazing sister Kim drove my parents from CT to spend time with Tristan. My good friend Darren let them all stay at his gorgeous rental lake house in Plymouth.... it was like paradise. It was nice to get Tristan outside and get the positive vibes from the lake and be showered by grandparent love. My brother gave Tristan some of his beloved match box cars and my parents brought him some of our old vinyl's including Journey, Def Leppard, Kenny Rodgers...The Police (I may steal them lol).
9/17/22 Tristan was honored with a generous donation from COPS for kids with CANCER. Tristan was not feeling well and we couldn't stay long but we were so appreciative & honored. Later that night Matt & I (well I did because I didn't let him get a word in as usual) spoke as the impact speaker at Levitate Rexicana Funk You Cancer event. The Pan-Mass riders & Funk You Cancer team raised $218 k for DFCI/BCH cancer research!!!!! Helping others & the cause is helping us get through this!!!
Mandy & Nick joined us on stage. Their son Matteo is alive due to cancer reasearch! He has had TWO bone marrow transplants! Mandy also has a yoga studio and has been a rock for our family!
Let's talk some other serious POSITIVE SUPERSTAR actions people have been taking to help us!!!!
Don McGill from McGill Consulting LLC and his team for creating an amazing bathroom for Tristan!
The Duxbury senior center lent us a wheel chair!
All the people who have/continue give rides to Aidan!
A Plus coach limo https://www.apluscoach.com/ who has offered rides to/from hospital and brought us to the funk you cancer event! I use them for my business travel to/from airport on a regular basis usually. They are a GEM!
Dawn Backlund set up a meal train (which is sooo helpful) and cleared our garage of a million amazon boxes. Tristan (and us) have received cards, gifts, gift cards, notes....we are SO very grateful for every little act of kindness though we might not get to writing thank you notes.
A huge thank you to anyone I didn't mention!!!
Halloween is Tristan's favorite holiday. He will be in the hospital then...so we are doing it early. A huge shout out to Greg Smith & son who decorated our yard & Renee Roberts for the witch (that literally is so life like it scares the shit out of me on a daily basis) & spider. We are planning to carve pumpkins on Friday then throw a mini Halloween party for him this Saturday. He picked out his costume as a "Plague Doctor". Quite an interesting concept.
Tristan has been asking a lot of questions about what is to come. He (and we) are not thrilled about going back to the hospital. We continue to shower him with love, positive vibes, & support.
A huge thank you to Sarah Clifford (dear friend) & Miss Tiffany (from Tristan's dance school Center Stage Dance Academy) for organizing our charity event "Family & Friends Day" (see below for link).
Also a huge thank you to Joe & Paula Hill who are organizing a car show for Tristan! Thank you all for being supportive.
FYI: I am still seeing patients Tuesday-Thursdays!!! Seeing my clients beautiful souls helps keep me sane!
By request here are links for those interested in Helping: