We got the call Friday night from Dr. Armand who gave us the incredible news that my PET scan on 10/26 was completely clean! No signs of Lymphoma!! This is the best news we have had in quite some time and the first time I have had a clean scan since my 2014 post transplant scan. We are very relieved that this whole process seems to be working exactly as it should. Now we point our compass to building back my immune system, physicality, and keeping graft vs host disease at bay. We are in a really good place this weekend!
Author Archives: calebmcgary
Day 80
Just an update since we haven’t posted in quite some time. Things are progressing along… slow but progress is progress. There are often weeks where it is two steps forward one step back, but that is all to be expected. I feel fortunate to be moving forward at all and trying to remain humble and patient in this process. I still go to Boston once a week for a check in and blood work but the Team is pleased with our status. Small side effects in the form of minor Graft vs Host Disease seem to be the main issue at this point. Upper body rash, dry eyes, dry mouth, disturbed mouth/tongue/throat and minor GI issues seem to be indicative of GVH but we are treating with steroids and not letting it get me down. Perspective is important and I’m here… with my family… and that is everything.
The norovirus took about 50ish days to clear up but it appears to have worked its way out about 95%.
We still are very restricted on who I can be around so I’m still in mask and gloves a majority of the time, no major public, distancing at all times when I can. Around day 100 I may be allowed to do more public interaction but until 6 months it will still be seldom. A PET scan on 10/26 will hopefully show a clean, cancer free scan. My intuition says it will be…
Stevie and I want to also take a moment to thank so many generous people that have gone beyond anything we could have imagined to help and support us. We’ll leave names off the internet, but the support and giving has been truly unbelievable. From picking up our broken down car again only to have the business owner tell me “you’re all set” and not accept any money. From the Dedham/Ellsworth community of our friends just surprising us with gift cards to buy our groceries, gas, kids supplies, and more. From family dropping off food, a golf fundraiser completely organized by one of my coworkers, State Troopers from all over New England supporting us with home goods and financial expenses. I could keep going. It’s hard to always be on the receiving end but we are so thankful for you all that are helping us. YOU have made this easier.
Caleb & Stevie
Headed home.
Getting ready to be discharged this morning after another long 8 days. Still not eating much and have lost 12 more pounds this week unfortunately. Food just doesn’t sit well at all while my system still fights this norovirus. Trying to get down an English muffin per day and some plain white rice. Our goal at home is just to find any food that doesn’t disrupt my stomach and GI tract. Hopefully improvement this week.
Update
So as all things were leaning towards graft vs host disease (GVHD) in my GI tract, things kind of took a hard left turn out of nowhere and they came in yesterday afternoon and announced they found I tested positive for Norovirus. After consulting with Dr. Armand and the rest of the Team, we will be shifting course if treatment away from anything to do with GVHD. We’ll stop steroids immediately and focus on reintroducing foods slowly to see if my GI can handle it. They pace is excruciatingly slow. Yesterday I was allowed a couple bowls of broth and jello cups. That was the only thing I’ve been allowed to eat or drink (other than sips of water to take pills) since Friday at 6pm. Today I hope they allow “solid liquids” which would include applesauce and milkshakes. I’ve lost another 8 pounds since Friday…. Not helpful.
The unfortunate part of having a virus in my immuno compromised condition is that my system just doesn’t have good defenses to fight things off so it festers and really causes major set backs like this. We thought we were so cautious at home but there is just no way in knowing where it came from.
Hopefully we can introduce a different food style each day without relapse with GI issues and once I can stay fed and hydrated while being off the IV tree and out of the bathroom they will allow me to come home. The soonest would be the weekend or into early next week. It’s unfortunate but the reality of life over the next 2 years after an allogrnic transplant may have several of these setbacks along our way and we’ll just adjust the best we can.
Day +30
We went to Caleb’s bi-weekly Belfast follow up on Friday. He has been experiencing some severe GI issues and his local oncologist was concerned that this could be the start of graft vs host disease (GVHD). On the way home Caleb’s Boston oncologist called saying he shared the concern and wanted Caleb to go to the ER to start treatment….in Boston. So, as we were preparing for Ellie’s birthday party, he had to go. Caleb spent the night in the ER at Brigham & Women’s Hospital, he doesn’t have a room yet but will be admitted, hopefully today. They have started IV steroids to treat the assumed GVHD. They will do some more testing to confirm GVHD on Monday. There are treatments for GVHD and it is a common complication with any sort of transplant. He will likely be in Boston for a few weeks. This is not where he wants to be, but we are very confident in the team of doctors working with him.
Day + 28
Back in Boston for follow up again today. Blood counts look good (where I’m supposed to be at this stage) but I did need a blood transfusion, magnesium, and fluids. They gave me nausea IV meds while we were at it because that’s still on our list of fun right now. Still doing Belfast appointments Monday and Fridays but hopefully those will lighten in the near future as my counts stay up and stabilize a bit. Definitely better than I was 7 days ago so focusing on week to week gains. Still no appetite and eating and drinking become a challenge but we are getting through it. Once that comes back I’m sure putting weight back on will be much easier. Thank you for all the continued support!!
Boston Follow Up
Back in Boston today for my weekly follow up. Blood counts are low but where they should be given the scenario. The past 3 days have been quite rough with nausea and GI issues so I’m getting an infusion today to include fluids, magnesium, and anti-nausea meds. We are hoping this gets a better handle on things so I can eat and drink better, as that’s not going so great.
We had to go to Belfast last Friday and Monday to check blood work at my local oncologist office but both times not blood or platelets were needed. I’ll go back to Belfast Friday to check labs again and hopefully my counts stay on the upward trajectory. Then back to Boston next Wednesday.
Day +15 going home.
My white cell and neutrophils continued to jump again over the last 24 hours. White cell is up to 2.19 (a normal range is 4.5-10) and neutrophils are at 1660. It’s finally time to come home!! Just getting magnesium and potassium and platelet infusions now but looks like we’ll be discharged this afternoon….finally. It’s been a long haul but we are all excited about this day. I’ll need to come back at least once a week for the next 3 months for follow ups but at least I’ll be home to promote more healing.
Day +14
White blood cell took a huge jump up over the last 24 hours from 0.07 to 0.77. The Team was quite happy with this jump and there is a lot of planning for possible discharge tomorrow or Friday. Feeling better today than the last few days and this bit of news really has our spirits lifted. Thank you again to everybody that has been supporting us along this journey!
Day +13
Just got the word that my white cell count finally took its first jump up after being rick bottom for 4 days in a row. We went from 0.01 (Friday-Monday) to 0.07 today. We should see that number really start to climb over the next week and that’s one of the units they measure to allow me to go home. I will be getting a blood infusion this morning to help my hemoglobin numbers. Finally headed in the right direction.
calebmcgary 