Hello to everyone and I hope that you are all having a good day and week. Apologies for the latency in posting, and hopefully you will also forgive a bit of a longer update this time to get everyone caught up. After the last post things were a bit back and forth with Dylan’s enzyme numbers for a few weeks so things were operating on the day to day, but before we get into that it is probably worth starting out by saying that our patient, our amazing girl, Dylan…is finally back home. ❤️

After the last post and for a few weeks (until the middle of February) the doctors at Stanford were still concerned about Dylan’s metrics for her transplant, primarily as they continued to wean her off of the steroids and trying to keep her rejection values as low as possible while trending downward into the normal range. During these weeks Dylan also struggled a lot with eating, and had a number of challenges where her stomach acts more like a pass thru instead of a stomach, and causes a lot of not great feelings in her tummy. This also makes for some large variations in blood sugar depending on the meal and how it goes. At one point there was a conference with the Stanford team where about 20+ doctors were on a Zoom call with us to try and find solutions. Obviously they were very concerned and trying as much as possible to help Dylan regain better function with digestion.

Unfortunately with the type of surgery that Dylan had solutions take time. Her body has to grow new organ tissue in her stomach and try to reestablish equilibrium in her digestion. This will likely happen on the timescale of multiple months and require a lot of patience, especially with the new sensations and behavior of her digestive track. It is highly probable that a lot of the discomforting symptoms Dylan has had with eating since her surgery are due to her new stomach anatomy. The doctors confirmed this around the time of the big team meeting with a contrast scan that showed them how food material was moving so quickly between stomach and intestines. Again, we hope this can improve with time, but it is hard to be patient when eating is something you do each and every day.

Additionally in early February Dylan was able to get her insulin pump delivered and installed. This is amazing! …and even though Dylan has learned how to do her own injections the pump provides a slightly more normalized existence. As you can expect there have been a few instances of the pump malfunctioning and not delivering the insulin properly…which is followed by some nasty blood sugar spikes, but eventually after a week or so the doctors felt with the pump working and her current metrics that Dylan could be released to come home.

So…in mid February the whole care team packed up and moved back home to Redding. Luckily at the time Eileen was down visiting and helping out so they were able to do some shuttling back and forth to get everything ready. Everyone was greeted with lots of love and hugs and plenty of kisses from various dogs who had missed their family for a long long time. 🐶 The homecoming was almost so surreal that many of us had a hard time comprehending the change. Sarah and Leslie and Dylan had lived so long a completely relocated life that re-entry I’m sure felt like nothing they’ve experienced before. Of course Dylan was extremely excited and even had some visits with friends soon after getting back. And knowing how much I love my sisters I bet that having Jordyn back was a huge support as well. I think you may have heard a collective sigh of relief from many of the constituents of my family around that time and now you know why.

So, how have things been since getting back home? Well, there has been a lot of readjusting to life with a new look to it! Dylan now has labwork done locally but has some travel back to Stanford that is required for her transplant checkups. At home Dylan is working on keeping up with school and doing remote learning because her compromised immune system is still a little too fragile to be going back to school yet. (You also might have noticed we are having a heck of a flu season this year…yuck!) Though this absence from school would be hard for any teenager, it is especially hard for Dylan as she misses her friends and social interaction immensely.

Other things that we are focusing on are trying to keep Dylan’s weight up as she has lost quite a bit of body mass since surgery. Over time the toll of being a new diabetic, the weird sensations she has when eating, and the new requirements for when and what to eat have been a struggle. Additionally as mentioned before the amount of nutrition that is absorbed from her digestive struggles is hard to estimate, but likely much lower than pre surgery. All of that variability also amounts to some pretty significant swings in blood sugar, which continues to be a learning process. It is a slow process figuring this all out, but everyone is taking it day by day.

Another interesting component of Dylan’s recovery is the amount of pills she has to take each day. I was very impressed when the crew arrived home and had them all spread out on the counter.

I recall at the hospital how many pills she would take throughout the day and night, but seeing them all gathered together is impressive to say the least. It is a big reminder about how extensive all of the components of a transplant are and this is especially true when it comes with so many other components of collateral damage Dylan encumbered with the entrenchment of her tumor. We continue to hope for Dylan each day that it is a good eating day, that it is a good blood sugar day, that she stays healthy, that she is able to talk to some friends, that what is surely an overwhelming situation doesn’t completely overwhelm her. There is a new rhythm to how things are working morning to noon to night and it continues to require a lot of care and concentration to keep everything together.

I think about my sister a lot these days too, wondering how she is holding up and if any given day is a good one or a struggle. Today she sent me a picture of her sourdough starter that we share, brought back from the brink after so many months away. (Sarah started baking about a year ago and it is a fun connection that she and I have 🥰)

I suppose it reminded me of the miracle of life that she has cultivated for her daughter and how gentle and caring she is, able to nurture and love and provide for Dylan in each and every moment of the day. She is able to take the small components of life and make them blossom somehow, in a way that I don’t understand and marvel at. I know she will probably grimace at me saying these things, but she deserves every and all praise for being what a mother should be. I want her to know that I see her, and I hear her, and I love her.

I hope that this update finds you well. I don’t know when the next update will come but hopefully sooner rather than later. We are maybe going to try and plan a few fundraising events for Dylan’s care this summer, so I will try to keep everyone in the loop about that. Again, we appreciate you all so much and thank you for keeping up with Dylan’s journey, you all are part of our care family and mean the world to us. ❤️

-c

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses.