Not gonna lie. Life is hard and I feel a bit like Atlas in the trials department, constantly pushing through challenge after challenge. However, I am fortunate to be surrounded by a group of fabulous women who are amazing warriors, comforters, healers, and friends. They have waited patiently for me to write this post and reach out to our friends and family for help. Ladies (you know who you are), I love you for being patient with me while I gathered some courage to be vulnerable.
Several years ago, Bridger was diagnosed with hyperinsulinemia. Basically, his pancreas over produces insulin which causes his blood sugars to be chronically low. We have a wonderful pediatric endocrinologist who has worked with us to treat his condition but unfortunately, nothing has worked. This includes medication, a very strict diet, special shakes, and more. Essentially, we do everything that a person with Type 1 Diabetes does to manage their blood sugars except dose with insulin. We have that in abundance. “Low blood sugar can be very dangerous, because the brain needs a constant source of sugar. If the brain doesn’t get the sugar it needs, it can lead to seizures, brain damage, and possibly death” (CHOP.edu). Bridger’s blood sugars must be managed, and it isn’t uncommon for him to be in the 40s or 50s several times a day, particularly at night. Add in his rapid growth (he’s pushing 6’2″ at 13), intense training for basketball, and puberty and it has been rough.
In March, we received the news that the likely cause of Bridger’s condition is a tumor in his pancreas called an insulinoma. They are typically non-cancerous but because his condition is complex, his endocrinologist consulted with specialists at Children’s Hospital of Philadelphia (CHOP) who agreed to take his case. On August 1st, Bridger and I will travel to CHOP for treatment and possible surgery to remove the tumor. The kicker however, is that they told us to plan on being in-patient at CHOP for anywhere between 2 and 8 weeks. Yup…anywhere between 14 and 60 days. Away from our family and far from home. Because of the serious nature of the condition, doctors will not allow us to put off the trip any longer. And we won’t know exactly what the treatment plan is until we get there and they do a complete work-up of his condition including a special scan of his pancreas in real-time to look at this beta cells.
As you can imagine, a trip of unknown length has really created a few logistical challenges, particularly now that Ben is on hospice. Yup, the H word. We haven’t shared that with the world until today. Over Spring Break, we were admitted to hospice care for Ben’s ALS. What does that look like? Cognitively, Ben is completely lucid and able to participate fully in that aspect of daily living. He helps the kids with homework, enjoys visitors, and is able to converse just like normal. However, he is now bed-bound, and he requires assistance for everything else. Even though I am working, my flexible scheduled has allowed me to be his full-time caregiver.
I have been really struggling with how to plan life with a sick husband and the need to be gone for an extended period of time. Remember when I mentioned being vulnerable earlier? Well, this is raw and real. I need help. My family will need help while I am gone. We are still working out the details of what that looks like — school and fall sports are starting; managing Ben’s care; meals for 11 people every day; and more.
I know there are many who want to help. I am working on all of the details but in the meantime, here are some specific things we need to get started:
- I know one need that would be incredibly helpful if it was met, would be meals for my family while I am gone. The easiest place to coordinate all of this is through Meal Train. You can access the calendar for August and sign-up to bring a meal in to our family by clicking this link: mealtrain.com/dy8824.
- Please add us to your prayers. I need them. My children need them. My darling husband needs them. Things are just incredibly hard right now and the emotional toll of terminal illness combined with the unknowns of this surgery and trip are overwhelming at best. We believe that God can heal Bridger. He offers peace. We trust His plan.
Thank you for being patient while I figure out how to clone myself for my family while I am gone – I am sure there will be many more ways you can help. Feel free to reach out to me if you have suggestions or specific things you think you can help with. I am deeply humbled. I am incredibly grateful for the love of so many. I may feel like Atlas, but I certainly am not alone. He is the Waymaker and He has given us the most amazing friends and family to carry us through this challenge.
One thought on “A little trip to Philly and the H word”
I know you have explained this to the Hospice RN, but with your Doc’s order they can have a full 24Hr. care with this change of circumstance.