We have been home for just over two weeks! Leaving the hospital was surprisingly emotional. I got in the elevator and just started crying uncontrollably. I was hoping to get pictures of the big day but as my kids say, I’m a very ugly crier. 😉. It’s so nice to be together as a family and sleep in our own beds and not have to spend all day and night wearing a mask and gloves. Matt our 9 year old is especially happy to have all 5 of us together. Ever since we purchased the orange bracelets to sell to raise money for pediatric cancer research, Matt has worn orange almost every single day and still continues to. Thank goodness he has at least seven different orange shirts and sweatshirts or people would really think the poor kid is wearing the same thing every day.
Being home has been an adjustment. We have 12 different medications that have to be given almost hourly starting at 8am - midnight. Frankie lost about 20 pounds so getting him to eat and drink has been a full time job. After the BMT and not eating for 2 months, it’s very difficult to get him to eat and drink as his body has gone through a lot and it takes time to get his appetite back and rebuild his strength. Being his caregiver has been exhausting, I cook whatever he wants for him to take one bite of it and say he can’t eat. I’m tired of hearing my voice telling him to eat and drink constantly in hopes that he stays hydrated and starts to gain some weight back. He is very restricted with what he can eat so basically it’s grilled cheese, cereal and bagels. Most days we are lucky if he gets 500 calories in him.
Twice a week we go back to Sloan for full days of tests, meetings, and certain meds that need to be given via IV. Typically have to be there by 8am and leave by 4. First thing they do is draw blood and within an hour of his blood being drawn I can see the results online before we meet with the team of Drs so I have tons of questions when we finally get to meet with the team. I want to make sure that things are moving in the right direction and feel confident that they don’t have any concerns. His liver enzymes were rising for over two weeks and I tried very hard to stay calm(not that easy). We were going to have to do another ultrasound and a liver biopsy if the trend continued. Luckily, yesterday they started to go down. Last week they had to take out his line(surgically inserted into his chest for all the meds to be given via IV) and insert a new one on the right side of his chest -original line was on the left side and they also tested his bone marrow. It was extremely painful after the procedure, we had to give him lots of pain meds to try to keep it under control
Last week, my sister Lisa said she’s going to Florida for a few days and suggested that I go as well......Frank and Frankie INSISTED that I go and assured me all will be ok. My mother and our other sister Laurie joined us and off we went for a three day getaway. It’s the first time in 5 months that I felt somewhat normal and was actually able to relax.
Frank took Frankie to Sloan yesterday and we got the best news - his bone marrow is clean- CANCER FREE and his liver enzymes are trending down. We are confident that this trend will continue and we will pray every day to make sure it does. In the meantime, I have been a bit of a finatic researching and buying things to keep him healthy- supplements, diet, and devices that limit the EMF from phones and electronics.
It has definitely been a roller coaster, the ups and downs can drive you crazy. We are so thankful we are where we are right now, although we still have a very long road ahead of us. Still have to take it day by day and continue to hope for a bright and healthy future.
Again and I can’t say it enough, we are so overwhelmed and appreciative for everyone’s love and prayers. We are so thankful to have so many close friends and family.
On a separate note, we have another two Montville families that are facing a similar battle. Please keep Joe Dodgson and his son Brian and the Burdick’s and their son Max in your prayers. They started their journey a couple months ago both and have been such an inspiration!
That’s it for now.
Love to all!
Karen, Frank, Frankie, Ally and Matt