Day 106: Sometimes It Pays to be Stubborn

Day 106 on the Road to Recovery…

Sophie’s recovery thus far has had a few ups and downs, but overall she is truly one amazing fighter of a kid.  Post-surgery, we remained in the Pediatric ICU for 11 days, with an additional night on the regular pediatric floor.  During that time period, Sophie recovered remarkably well; so well in fact that many of our nurses were absolutely shocked to see her walking the halls less than 24 hours after her operation.  This was ideal, as our surgeon stressed the importance of movement and getting up and out of bed post-surgery to help speed up the recovery process.

Each day after surgery, Sophie received visits from a variety of doctors, such as the surgical team, oncology team, anesthesiology team, nurses and nurse practitioners, as well as OT and PT therapists to aid in her progress.  It was a bit overwhelming at first to have such a large amount of attention placed on us post-operation (only 5 PICU beds in total, with one designated nurse on call for us at all hours of the day) but also pretty unbelievable to see so many people rooting for Sophie each step she took and each milestone she reached over the course of our hospital stay.

Sophie is one tough, stubborn kid.

On our 8th day post-surgery, we received an enormous surprise; Sophie had surpassed each of the milestones required to be discharged, and they were going to sending us home.  We returned home in the early afternoon, in less than 3 hours, we began to be a bit concerned with Sophie’s breathing (she had previously been on oxygen for most of her stay; routine recovery for a lung operation), which resulted in our shortest round-trip to date. Sophie was readmitted to the ICU and put on oxygen as soon as we returned. While it was definitely disappointing to go back, and difficult for Sophie to comprehend, we ultimately understood that she was still in the midst of her recovery, and needed additional days to really heal from the toll that the surgery took on her body.

Finally on Friday of last week we were discharged home permanently, and we arrived home early afternoon before Shabbos.  We had a fairly quiet weekend (other than a quick MSK trip for a random fever), with a number of fun playdates for Sophie to enjoy.  She is continuing to recover more and more each day through the help of some new physical therapy and lung treatments given to us specifically for this purpose.  She has also been able to enjoy the last few days of beautiful weather, with a number of trips to the park, walks around the neighborhood, and “scootering” around town, which have all helped to aid in her recovery as well.

We will be starting chemo early next week, which begins the next chapter in Sophie’s journey to recovery.  While final official pathology reports have not yet come back, we can unofficially confirm that our brilliant surgeon did in fact get negative margins around the entire tumor, which was the absolute best possible outcome for this large milestone!

Thank you again for the outpouring of love and support, prayers, emails, texts and phone calls we have received over the last few weeks; we read each message and absolutely cherish the amazing supportive network we know we have around us.

16 Replies to “Day 106: Sometimes It Pays to be Stubborn”

  1. Sara Friedman says: Reply

    Thank you so much for the update. You are all in our thoughts and prayers.

  2. Amazing! May Sophie go from this recovery to a complete recovery!
    Much love!

  3. Sara Malka Margolis says: Reply

    Shalva Gavriella bas Shani Aliza continues to be in my and Larry’s prayers and misheberachs for her refuah shleima1!!! Thank you for the updates. xoxoxo

  4. David and shira says: Reply

    So happy to hear some positive news! Esti can’t wait to play with Sophie soon!

  5. Devora and Shivi says: Reply

    Baruch HaShem! So happy to hear that Sophie is doing so well! Her mommy and daddy are a continued source of strength and inspiration! May we continue to hear only amazing news! Sending lots of love!!!

  6. Charles plittman says: Reply

    May Hashem continue to look after her

  7. Thank you so much for this update. May Hashem continue looking after her.

  8. Debbi Marcus says: Reply

    So happy to hear the continuous progress. You’re all always in my prayers.

  9. Talia Furleiter says: Reply

    So glad to hear Sophie is doing well and getting to enjoy home and the beautiful weather! Hope Ezra and Sophie can play together again soon!

  10. Berni and Larry says: Reply

    Thinking of both of you all the time. Prayers and love for Sophie.

  11. Yali Friedman says: Reply

    Wishing Sophie a complete and speedy recovery. Good Shabbas!

  12. Sending Sophie kisses and hugs.
    We love her (and you)

  13. Faye Bourgstein says: Reply

    Faye Bourgstein

    1. Faye Bourgstein says: Reply

      Thinking of Sophie each day and praying for a speedy recovery – You are all in my prayers – special hugs and kisses. Lots and lots of love

  14. Sheera Graber says: Reply

    Praying for Sophie every day. Thank you for the updates! I hope the recovery continues to go smoothly.

  15. Dear lord I will place my hope in u if I become discouraged I will turn to u if I am afraid I will seek strength in Sophie in every aspect of her life I will trust u . U r my father and I will place my hope my trust and my faith in u lord Sophie is a strong girl and as the days go by I love her so dearly to my heart cnt wait to see she come bck like hw I first meant her I have been with her for 8 months nw and it come like am with her for for 4 years she is so amazing she is loving and kind

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