Hi all – We’ve been getting a lot of questions about how Sally is doing, so wanted to provide an update.
Sally’s cast came off the week before last when we found out that the staff who remove casts can only do so on Thursdays, which meant she would have had it on until the week after New Years due to both major Holidays falling on Thursdays this year. She did a great job and laid quietly on me while they sawed it off.
Unfortunately our joy of having it off was short-lived when we learned that although Sally’s leg healed, it remained fractured in two places. In addition, the bone in her leg has deteriorated so much from the treatment that it was transparent on the X-Ray. The doctors think that Sally has been experiencing micro-fractures in her leg this whole time, and will likely continue to do so. They decided to leave her cast off so she could work to strengthen it, however we have to watch her very closely. Sally is the best barometer of how she is feeling so we cannot push her to crawl or stand if she is not willing. She will likely continue to fracture it throughout the rest of treatment, however this should help strengthen it over time. A double edged sword.
That night she took off crawling and has been both skooching on her butt and crawling around our home. She pulled herself up to stand a handful of times but mostly avoids putting pressure on the leg for more than a few seconds. It’s frustrating for us considering how close she had gotten to walking, and knowing she may not do so until after her 3rd birthday this fall when treatment ends. It will be a long battle for us to get her back to where she was.
Another change in Sally’s development was that she began drinking water. Not just sucking it up and spitting it out, but swallowing. She loves to sit in her highchair and sip on her straw while we push food in through her feeding tube so she relates swallowing to getting full. However, every step forward with her has a step back, she is no longer eating any solids off a spoon which she had just begun doing previously. Another ongoing battle for us.
Other than that she has been an absolute joy to be around, so happy and full of energy. The Holidays allowed us to see family on both sides, some of whom haven’t seen her in months, and all enjoyed being around her spunk. We even got to bring Sally to see Santa, arranged by our friends Justin & Leigh Brannan who had us come at a time where there were minimal families and were patient with us. Sally, who is obsessed with Santa, was all too happy to sit on Santa’s lap for her first ever photo with him, last year being robbed by cancer.
Christmas was great, we all got to go to see Thomas in his Christmas Pageant at our church, Sally’s first time there since she was baptized as we can’t bring her into crowded space. The organizers had us sit up in the choir loft away from the crowd which is the only reason we were able to do it. Although a nice family behind us had kids who were coughing, so I took Sally and sat alone away from the other families up there. It was funny because Sally kept waving and smiling to everybody, happy as could be, however a reminder of why we can’t bring her into spaces like that.
Christmas Eve we spent with family doing the Feast of the Seven Fishes which lasted til midnight, our little party girl refusing to sleep. Christmas morning we opened presents of which most were donated by Megan Hamm Williams, a mother who battled childhood cancer and wanted to give back so sponsored our family along with her friends and family coincidentally in Western NY. We want to offer them a heartfelt thank you for all of their wonderful gifts, and to everybody who sent our family presents, you made our Christmas so much brighter.
The following days were spent between our families in Connecticut and Rockland County, Sally having a blast getting to go to different houses and seeing family that she hasn’t seen in quite some time.
Of course, the fun has to come to an end. Tomorrow on New Year’s Eve we all have to be at MSK at 7am where Sally is expected to return to the more intense chemo plan she was on before the seizures forced us into this two month reduction. There is a lot of uncertainty with how these remaining eight months will go, we’re going to have to thread the needle with her treatment based on how she is doing. We want to the chemo to be as intense as she can handle it as threat of relapse with her specific diagnosis is high, however have to be cognizant of how it is affecting her body both short and long term.
The plan will be 100% tailored to Sally and how she is doing/feeling. They will not be giving her the spinal tap of chemo due to the seizures. They will likely reduce or skip some of the steroid treatments due to her bones weakening. We’re not quite sure on the dosage of her other chemos, even tomorrow’s.
It’s frustrating as the plan is that there is no plan. We have stuck to a very rigid plan for over a year and the uncertainty of not knowing what these next few months will look like brings fear and makes us unsettled. It’s likely something we are going to have to adjust to as cancer continues to throw curveballs at us. Will her GI issues return now? Wil her development be stunted again? Can her body handle more treatment? Will all that beautiful blonde hair she’s grown fall out as our doctors have told us to mentally prepare for?
Her hair coming back was what most people have commented on the last few weeks, I think most who don’t follow Sally closely think she’s over the hard part of treatment, which is as far from the truth as you can get. Her having hair has made things feel more ‘normal’ lately, walking down the street or meeting people you don’t get the same curious glances as when she was bald. It may just be hair but it’s a metaphor for what these two months have been like outside of the broken leg, a sense of what our lives would be like if cancer hadn’t shaken them to our core. Tomorrow we begin what is hopefully the final long leg of the journey that will get us back to that point this fall, however we go into it knowing it will test us all more than we have experienced so far.
One day at a time…
Please keep Sally in your thoughts and prayers.
Much love & many prayers are with you. You are the bravest young people I know.
Prayers to Sally & your family. God is good…place it all in his hands and he will take care of you.
She is darling. Her spirit so sweet. Prayers for you , your family and all who care for her.
I cry for this poor baby and your whole family. May God keep you all strong and please Dear God, heal this sweet baby. You are all in our Prayers every day.
Please do look into all the news about cannabis oil curing cancer. It can’t hurt to check it out.
Our thoughts and Prayers are with you constantly.
My husband and I meet your Sweet Sally Sunshine this November while we were in Brooklyn visiting my nephew and his family, Alaric and Rosie. We were walking to an eatery and Sally, her brother, and mom were all outside, enjoying the sunny day. Little Sally was standing along the sidewalk, holding onto the fence. She was all smiles, and I recognized her immediately because I’ve followed the FB entries for some time. Our thoughts are with you during this difficult time. We wish you and your family all the best and send Sally well wishes everyday.
Sending prayers & good healing karma from this Sally to your beautiful Sally!
I’ve really enjoyed Facebook this December. Seeing the Kabels as a normal family and Sally so happy. But, we knew January was coming. Every “new year” is full of unknowns. Sometimes no-plan is a plan. You trust Sally’s Doctors. They serve you so well. Keep the Faith as you charge ahead. Know we are praying for you all.
Merry Christmas Sally!! ❤️❤️❤️
I love you all! I admire your honesty in your post and bringing to light this cancer that has been brought upon Miss Sally and your family!
My god bless Sally, may the months fly by and this can be an experience that can be put to rest!
Blessings for the New Year and the end of Sally’s treatments!
Love ,hugs and more love!
Again love you all
We wish you all Healthy New Year keeping Sally and the rest of you Darlings in our prayers! Bozena and Kasper
Wit have been following your very brave family for a few months from afar.
You are resilient and can cope with whatever live throws at you. Thr will be a light at the end of this tunnel!
Have a blessed new year
pray for her every day and you guys too…………
Your WHOLE family is in our thoughts and prayers…God bless…
I think of you so often and continue to pray for Sweet Sally and all of you. Seeing Sally at MSKC while we were there always brought a smile to our faces as, like Mac, she was always smiling.
I had a mass said for all of you as my Christmas gift. You are in my thoughts and prayers every day and I pray that God continues to give you the strength and courage you need on this journey with Sally.
I’m so glad you were able to enjoy a family Christmas.
Merry Christmas and Wishes for a Happy and Healthy New Year! Wishing Sally and the entire family all the joys no miracles of this Blessed Season. She has come so far and is a beautiful little girl!
Sarah called to fill me in on the Family Reunion in Rockland County. How wonderful that you got to share love and time together. I was thrilled to hear of it! Now we are off again. Lord, please heal Sallly and sustain our Family Love! Mom K
Bless you sweet Sally. May the lord bless and keep you and your family.
Prayers, good thoughts and more prayers for Sally and her whole family to get through the next eight months. I was so happy to see that a great Christmas was celebrated at your home. God bless her and all of you. Stay strong and positive.
I’m Cheri Mcdermott’s dad and just wanted to extend our deepest strength that we could pass on to you and Sally. Our prayers will be concentrating on Sally during this next very difficult stage. May god give you the help you need to kick this terrible disease!
Sending lots of love and prayers and a belated Merry Christmas! I’m glad you were all able to enjoy some normalcy this holiday season and I hope and pray for only the best for Miss Sally and for you all. Hugs! cj