I haven’t posted an update in awhile as it’s been a whirlwind few months. I continue to work full time and travel to stay on top of the latest & greatest in Aesthetic medicine. This is important to support our family. Matt has been awesome in supporting me by caring for Tristan so I can support our family financially. Yes, I have fun on my trips but it’s important to take care of yourself to be able to care for others. I was inspired when I met Dr. Tess Mauricio recently who has been through a similar journey with her husband who had cancer.
Marriage takes teamwork and despite this difficult time Tristan's illness has brought us closer as a family. Matt hasn’t gotten much of a break as we can’t leave T alone. He still has clinic visits in Boston 1-2 times a week which sucks…. These trips leave both T and Matt exhausted and feel like wasted days. On the positive side: we are blessed to live close to these world renowned hospitals. I’m sending Matt and our older son on a trip soon for a break and I’ll stay home with my minion (T). TEAMWORK makes the dream work.
We learned to live each day to the fullest and make every day a great day.
Where we stand now: Tristan is 100 days post stem cell transplant! Yay. It hasn’t been easy. He wakes up most days nauseated and weak. He gets sick often and has little to no appetite. He is on IV fluids at night. He has to take approximately 35 plus pills a day. It is all for the goal of full recovery. He is on an immunosuppressive Cyclosporin which has nasty side effects including hypertension. He is in isolation for another 3-6 months. T had an admission for hypertensive crisis then another one for Covid. He has luckily recovered from both.
Once a runner he has bilateral leg/feet & ankle stress fractures from chronic steroid use and low vitamin D. This has caused him a lot of pain and sometimes he is wheelchair bound.
We are making slow strides daily and his team is decreasing his Cyclosporine! Yay! Now we have to carefully watch he doesn’t get GVHD (rejection) again. That means he has to take less meds which is wonderful.
School:
He has a few online courses he needs to take but he is behind because of not feeling well. However his goal is to get caught up because “he doesn’t want to get left behind”. He REALLY wants to graduate with his class. He will have missed his entire freshman year. If he improves there is hope he can resume in school classes next fall!!!
Isolation:
Is due to the immunosuppressive therapies he’s on that causes him to have a immune system as weak as a baby. We have luckily had two places Salt and Dishes (now RT 53 tavern) who have closed off private rooms so we could take him out to dinner. He likes to visit my practice once a week and get amazing facials by Kristal (she is home oncology aesthetic certified). The spa has HEPA and UV filtered air so it’s safe for him there and it’s just good to get him out of the house. He also finds our staff quite amusing.
Cacti:
Tristan loves his cacti plants and succulents. We are slowly bringing them back home. We care for them so he doesn’t touch them (plant dirt carries bacteria). He loves all types of cacti (along with his squids). So for those looking to spoil him he likes small cacti plants & books!
Pets:
Our saving grace has been A) Our positive attitude and B) our stinky pets! Our two dogs, cat, and chickens have been therapy for him. His wish is for a pure bred cat of his own when his doctors clear him for this. They don’t make you get rid of existing pets but he can’t get a new pet until he is off Cyclosporin. So if you know a breeder we are looking for a Russian Blue or Siberian. This will give him something to look forward too!
Make a Wish:
We met with his team and Tristan has a few ideas….a master computer art/gaming situation or a garage redo to work on cars. He was helping my friend J out maintaining his classic cars before he got sick…and he is obsessed with classic cars!
T has made a list of destinations he wants to visit when feeling better. When he gets stronger we will be able to actually start teaching him to drive soon! So… we are focusing on making EVERY day a great day. We are making plans and moving forward with full recovery as only option! We are so very grateful for everyone who has helped in the past and continues to help!
You KNOW we will pay it forward♥️