Day 225: The Ups and Downs

Day 225 on the road to recovery…

We are onto our 10th (of 12) chemo rounds; which hopefully means only two more to go until Sophie’s chemo treatment is complete.  Sophie’s body’s reaction, emotional well-being and energy levels vary somewhat during and after each chemo treatment.  Some cycles she flies through without any concerns, while others (especially the earlier ones in particular) were significantly more difficult for her to get through.  Nausea, low energy, lack of sleep and discomfort are the main symptoms she has experienced, each with varying degrees of severity during each cycle.  

This particular chemo round has been a bit more challenging than the last few unfortunately.  While she was in good spirits day one and enjoyed many of the fun activities in the MSK playroom, day two was definitely more taxing on her physically.  She endured low energy levels and spent most of the day in her room, not even wanting to venture out to the “Moana” party in the playroom.  It is always painful for us to see our normally spunky, energetic, 3 year old in low spirits, but we thank Steve Jobs everyday for the invention of the iPad, which definitely makes these days more bearable for her to endure.  

Thankfully, the weeks leading up to this chemo round were fairly uneventful in terms of unexpected doctor visits.  Each child’s reaction to their chemotherapy regimen is different, and therefore their particular team determines follow-up visits, blood count checks, etc. based on their previous cycle patterns.  Fortunately for us, Sophie’s team has found that her new post-surgery regimen does not significantly reduce her blood counts (unlike her pre-surgery chemos), and we therefore do not need to do continual blood counts throughout the 3 week cycle.  We really appreciate this fact, as each poke and blood draw is always difficult for her (and us!) and it means we have more time at home and less spent at Sloan.  

Although we try and spend as little time as possible at MSK, the time we do spend there lends itself to meeting families dealing with similar circumstances.  Early on, we were told that this could be a helpful piece to navigating our new landscape. Since then, many people have asked us this exact question; “have you connected with families going through similar challenges, or have you made “friends” along the way”.  Truthfully, the answer to this question is that we have often found this difficult to do.  Given the fact that each case is unique, building close relationships with other patients and families can sometimes bring with it extra heartache and pain.  They are often a constant reminder that every single one of these children are very sick with widely varying prognoses. This sobering thought for us is really the reason we find it so difficult to connect with more families than we already have

Despite our feelings, there are two special families we have become close with, and that stand out in our minds as we write this.  Both families’ constant strength and positivity are extremely inspiring, and we have learned from them how to be strong for others around us as well. We have been roommates with both families as well on M9 for extended periods of time (the inpatient side of MSK) at different points during Sophie’s treatment and have therefore gotten to know them more intimately than other families at MSK.

The first family has a little girl slightly older than Sophie, diagnosed with an aggressive form of neuroblastoma.  They moved their family of 5 to the United States in order to give their daughter the best fighting chance for survival. She is still being treated at Sloan but so far have been unable to find a successful treatment plan. She and Sophie played together recently in the MSK playroom, which they both enjoyed.

The other patient was a 17 year old boy with advanced stage cancer who was always surrounded by his brother and two of the sweetest parents we have ever met.   Our 17 year old friend passed away in early February of this year, a few days after we spent time with him in the recreation room.  Even though there was a large age gap between him and Sophie, they connected after he gifted Sophie with an adorable pair of pink minnie mouse slippers to wear during our hospital stay.  They quickly became her favorite slippers and she still wears them at home around the house.  Each time she puts them on we are reminded of the special boy that gave them to her.

All in all, what we have learned from our many encounters is that no two experiences are ever really the same. Each child and family has their own particular diagnosis, prognosis, and narrative, and we constantly find ourselves humbled by our lack of familiarity with medical treatments and diagnoses outside of our own individual experiences.  

7 Comment

  1. Thank you for giving me a feeling for some of the relationships that form in these circumstances. I was especially moved by the gift of the mickey mouse slippers. It’s an amazingly beautiful testimony to the power of the human spirit that often shines most brightly in challenging and painful circumstances.
    Sending you love and strength,
    Elazar

    1. Keep getting well Solphie. I daven for you every day. You have terrific parents.

  2. Zelda Wildman says: Reply

    Continued refuah dearest Sophie. Although we personally don’t know you or your family, through these posts we keep up with your progress. May Hashem shower you with many brachot of healing and strength. You inspire us and we daven for your refuah.

  3. Seryl Ritter says: Reply

    Keeping Sophie and all of you in our thoughts and prayers . May Hadhem’s blessings be yours as our best wishes for now and always !!

  4. Debbie Berta says: Reply

    Thanks, Jen, for sharing this! I always read this to my husband with tears in my eyes. You guys are amazing parents and we can’t fathom how diccult it is for all of you and other families to go through this. Our love you and your family, but mostly big hugs and kisses to Sophie! She is in our prayers!
    Deb

  5. pam horowitz says: Reply

    I’m thinking of you and your darling Sophie, with heartfelt wishes and prayers for continued strength and positive reports. Refuah shlema.

  6. Brandon Turpin says: Reply

    Our 6 month old daughter recently had a surgery to remove a cyst on her lung. We got the devastating news after that she was diagnosed with Pleuropulmonary Blastoma. We are just starting out our journey but wanted to let you know that your blog has been real helpful for us to read through and connect (through the internet) with someone who is experiencing this same type of rare cancer! Thank you very much for your updates and we will continue to follow and pray for cute little Sophie!

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