Updated: Sep 7, 2022
It’s been awhile since I posted because we are getting acclimated to having Tristan home. We have put aside our electronics and have full attention on our family. It’s ironic that it took our son getting leukemia to make us realize how we truly lacked “quality family time”. That email, text message and phone call CAN WAIT. Our kids grow so fast…. We are truly learning what it means to CHERISH every day!!!! What a gift to be able to simply open a window or door and get FRESH AIR (in the hospital Tristan isn’t allowed to go outside). To be able to take him to his favorite restaurant….is a gift. What's a day in our life look like?
Tristan has an IV catheter call a PICC line which we need to flush every 8hours. He had medications three times a day. He is so tired of having to take so many pills. I sleep next to him, with a thermometer by my side. A fever is an emergency in cancer patients. My husband has learned how to do many nursing functions to help. T is very weak and we are doing our own physical therapy with him daily!
He has VNA coming in twice a week. They check his labs. T's hemoglobin is dropping which can cause dizziness, fatigue and falls. He may need to go in to Jimmy Fund clinic for a transfusion this Friday. Next week he has to go to clinic Thursday for tests and Friday for a lumbar puncture and interthecal chemotherapy.
We have been surrounding ourselves with survivors/supporters like Sarah, Jamie, Mandy (Remys mom) and Amy (runs Funkyou cancer...Check out this event September 17 (link in my IG bio and on my fb page). Matt and I will be impact speakers. A huge thank you to Laura Girard for making the Tristan Strong bracelets! People are selling them $5 each. We are letting Tristan use the money for fun gifts!!!
We want to thank everyone who made Tristan’s first homecoming iconic! We photographed & videod all the amazing art work and hung all the decorations, signs & balloons inside due to torrential downpours.
He was very weak day one and our neighbors helped us get T into the house.
. Day 2 VNA didn’t show up but with the help of Dana Farber (DFCI) and Jeanne Griffin Vaughn NP I was able to give T his chemo at home.
The following week DFCI certified me to do T chemo at home which has led to a better quality of life for him…and us.
This past Saturday T had a rough day… he got sick from the chemo…. Yet bounced back enough to make it to the Duxbury Beach party. This was due to efforts of Douglass ross & Stuart & the Waves & T’s best friends the “Squid Squad”. This amazing team saved us a parking spot, a spot next to the band…and T was able to see his best friends and enjoy music. He only lasted a 1/2 h but it was an amazing 1/2 h. Tristans friends (Edith…u to rock) made custom SQUID SQUAD t shirts…. Which were amazing !!!! They allowed me to speak about the importance of swabbing for “BE THE MATCH” and Mandy Goldman (Remy her sons is s leukemia survivor) handed out 30 kits!!! We continue to worry constantly and had few fever scares (fevers are an emergency and typically require hospitalization for cancer patients) but luckily have been able to care for him at home 🤞thus far. My goal is to keep him home as long as we can before transplant.
Tristan had lost over 15 lb in the hospital. Our goal is to get him fat & happy! We strive to increase his weight and strength while providing as many fun memories and positive vibes as we can before he goes in for his bone marrow transplant. We are surrounded ourselves with survivors, positive energy and thoughtful people …friends and strangers alike. Your support and welcomed, appreciated and cherished. Xxooo♥️🙏♥️
LS:🎃🎃🎃🎃T will likely be hospitalized for his favorite holiday Halloween (and thanksgiving & ChristMas) if anyone wants to come by and decorate our yard with anything Halloweenish it would make his day. Just don't ring doorbell because it will freak our dogs out!
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