Wow! I can’t believe we are at 100 days. Time sure does fly when you are having fun ☺️
The last 37 days have been such a mix of emotions- happy, sad, scared, frustrated and grateful all rolled into one. Everyday presents a new challenge. There are so many things that we’ve never even heard of that you could get after having a bone marrow transplant. Luckily, we have only encountered some mild Graft vs Host disease and the BK virus since we are home. We are just so grateful that we have not landed back in the hospital which is very common after transplant.
The 100 day mark is a huge milestone. This is the time that the acute graph versus host disease hopefully stops and we pray that the chronic Graft vs Host disease never starts. Frankie’s T cells have come in and are almost normal. These are the cells that help fight infection. We find out next week if they are actually functioning and if so that makes him a free boy!!! He has not been able to go anywhere other than the hospital and maybe a friends house. He is still so thin and needs to gain 15 to 20 pounds. His taste buds are totally off and he has no appetite which does happen after transplant. Most of us wish we had that problem, but it is very serious- he was very close to having to get a feeding tube this week, but thankfully he gained 2 pounds. Apparently, he should start feeling more like himself and get his appetite back by September.
Being a full-time caregiver is no easy task- especially to a very stubborn, strong headed teenage boy. 😳. I spend a good portion of my day telling him what to do and having him ignore me. It’s lots of fun. We try to do things with him so he’s not totally bored, one day we took him driving on the beach only to get stuck in the sand as the riptide was coming in and was literally touching the tires of the car. Thank goodness for all the nice men that came to save us. I actually went back to work one day a week for about six hours a day. It’s nice to feel somewhat normal again
Tomorrow is June 9, that was the day Ally was supposed to have her Bat Mitzvah. It’s crazy how things all work out. Hoping and praying that over the next four months, he will continue to get stronger and remain healthy so by the time October 6 rolls around, we could have one huge celebration for Ally and all of us.
As most of you know, Kristin and Carlo Marucci suprised us with a beefsteak dinner fundraiser. This was a very uneasy thing for me from day one as I didn’t want anyone doing things for us other than being there for us emotionally. Eventually, I stopped stressing about it and started to embrace it as the timing could not have been any better. The dinner was May 10th and the week prior we had just found out that Frankie was cancer free and doing great. There were 400 people at the dinner and it turned out to be a beautiful night. We are still so overwhelmed by all of our friends, family, and businesses that showed their support that night. Thank you from the bottom of our hearts!!! We really are so grateful to be surrounded by so many wonderful people.
Cancer or any health issue absolutely changes you as a person. We certainly look at things differently and see things that perhaps we were too busy to see before. The one thing Frank and I continuously say is even though these past 7 months have been hell, there is still a lot of good that came out of it and we feel so thankful and blessed to be in the situation we are today. We just need to continue the path we are on and remain healthy for the days, months, and years ahead.
Huge milestone. He just got on his electric bike and went to go meet his friends at the rec. His aunt Lisa was kind enough to buy him this bike so he could keep up with his friends. So if you see a skinny kid with shorts and a winter hat on -that’s him. His eyebrows and eyelashes are finally growing back, but the hair on his head will take more time and also appears to be coming in much much darker. He is still adorable!
So the plan from this point is for Frankie to have his freedom, gain some weight, continue to get strong, and be well enough to be back in school in September and remain cancer free forever!!
Love to all!
Karen, Frank, Frankie,Ally and Matt