Yesterday morning we headed to CCHMC early to be with Ethan as he prepared for another surgery. This one under the watchful eye of his surgery team but performed by the Interventional Radiology Team. Ethan’s list of medical professionals continues to grow. Ethan underwent a 1-hour procedure to remove a large pocket of fluid collecting in his abdomen. This procedure was not unexpected, but it does not take away the anxiety of it all. For the sixth time in 5.5 months we escorted Ethan to the OR Floor of the hospital and lovingly handed him over to his gifted medical team and proceeded to the OR Waiting Area. The waiting, the sitting, the thinking does not get any easier.
Ethan is one strong dude. He seems determined and focused on his healing. It is our hope and prayer that by eliminating his stomach discomfort, Ethan can increase his focus on his rehabilitation program and reestablish the connections we are hoping to see that will allow him to regain his speech, arm and leg control.
As always, we continue to be impressed and thankful for the medical team caring for Ethan. He is being seen by the best of the best – no doubt. The support of Team Ethan is unwavering as we have now reinitiated similar support to what was in place during Ethan’s previous hospitalizations. The duration of this hospitalization is unknown – we have been told to prepare for another 2-3 weeks or more.
In the last week we have truly run the gamut of emotions once again. Hope, faith, fear and anxiety, to name a few. With so much time and energy focused on pain management and continuing to move things forward, we haven’t had the time to adequately reflect on the two great events held in Ethan’s honor last week. The 8th Night for Ethan seemed to be a tremendous success. While we “watched” from the waiting room via FaceTime, we were impressed by the crowd that gathered at Rockwern Academy in Cincinnati. We were truly proud of our children, Zakary and Elyse, who stepped up to represent our family. We could not be more grateful to the fabulous team of volunteers who spearheaded the efforts for 8th Night for Ethan: Jen, Julia, Felicia, Laura, Julie, Beth. And thanks to Mike and Ethan S. for their great work on the 8th Night Video. There are so many others to thank and we apologize if we have left out any names, certainly not intentional. In addition, we were incredibly touched by the outpouring of support for Ethan globally as candles were lit in his honor and donations were made for the last night of Chanukah.
From our remarks at Rockwern, delivered by Zakary:
The idea of Eighth Night for Ethan was created as a way to encourage individuals, families and communities to participate in this special night of giving tzedakah for Ethan’s ongoing medical care. It is our greatest wish that this will become an annual event, and that someday, G-d willing, Ethan will no longer need the funds raised and he will take part in choosing a worthy cause to designate the donations to.
We moved from the 8th Night event to the Road to Eden/Ethan event held at Camp GUCI last Saturday evening. While we were not able to attend, again Zakary represented our family (and we hear he delivered his own beautiful remarks; we have yet to watch the recording ourselves). The love and support we have felt from the GUCI family has kept our spirits lifted.
Bridging the two events was Dan Nichols, who has been elevated to SuperMensch in our books, for his continued support of our family through his time and efforts, and especially through his music. Ethan was fortunate to have a bedside serenade by Dan and his guitar in the hours leading up to his surgery last Wednesday and we were moved by his gentle and soothing voice.
Our hearts are filled with gratitude and love to so many; these donations will make a tremendous impact in easing the financial challenges of Ethan’s short- and long-term care.
May we all feel strength in this Shabbat,
Alexia and Scott