Our ‘Marathon’ Week

We’ve Reached the Finish-line

Our wild and wonderful marathon week has come to an end. We started out with a clinic visit at Boston Children’s Hospital that resulted in the ability to wean Camden further off his TPN- we are going from 7 days a week to 6 days a week + hydration only (on the 7th day) PLUS a wean on caloric content. Spirit Fingers🙌🏻 As always, it was amazing to see our team while at BCH.

The afternoon after our appointment- we drove to NYC to promote MedGift on Fox and Friends (MedGift is more than deserving of its own future post-be on the lookout). The experience was amazing- mostly because I was able to connect with my friend Megan that I hadn’t seen in a very very long time. Our meeting was emotion filled- because of all that we have experienced since we last connected- personally. Megan fought for and supported her sister, Diem through a 10 year battle against ovarian cancer and is a caregiver any patient would hope to have and we have fought this past year against HELLP, Intestinal Malrotation with Volvulous, and Short Bowel Sydrome. We had so many parallels in our stories that made me realize (even more) how interconnected people are who have experienced personal medical crises. There is a new level of awareness that is exposed and a level of empathy and understanding that can’t be explained. It was such a refreshing reunion. The segment went great and I was honored to promote MedGift (www.MedGift.com) as a resource for families going through challenging times. (See link for segment).


PS- I know you are wondering, yes, Camden did meet Geraldo👨🏻

Lastly (but not least) we celebrated Camden’s nurse Katie- who has been training to run the Boston Marathon in his honor. While we were inpatient, Katie asked Camden to be her patient partner and it was our absolute pleasure to cheer her on throughout her training. As a family, it meant so much to be in Boston on race day and support Katie as she completed (and kicked butt with) her first marathon. The race was symbolic of our ‘marathon’ this past year and represented not only Camden, but Zachary (Hi, Dale!👋🏻), Josh and the other children who fight every.day. That’s powerful. When we saw Katie turn the corner onto the final stretch of the run and lay her eyes on the finish-line it sent chills down our spines. Perseverance and determination are two of Katie’s many wonderful traits and we watched them pay off first-hand. We met, hugged and celebrated Katie’s turn onto ‘the home stretch.’ And when Katie turned to begin running her final leg of HER marathon, Camden’s picture on the back of her singlet stared back at us. It reminded me of how valuable it is to maintain focus and resilience in our day-to-day and it made me so proud of the experiences that we’ve had and the people that we’ve met while ‘running’ OUR marathon…and we’ve only touched the tip of the iceberg. Phew- it was an intense moment. I can’t wait to see what’s next for Camden and our family. Positivity hasn’t mislead us this far… I think we’ll hang onto it for the long ‘run.’ Life is what you make it!☀️

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