Hi all – As you probably surmised from the title, Sally has suffered a broken leg. We were visiting family on Sunday night where Sally managed to climb a small set of stairs for the first time. It was a huge achievement for her and were so proud. While climbing again, she all of a sudden screamed out in pain.
We got home and she was still crying out in pain when moving her, and proceeded to wake up screaming multiple times. We decided to give her painkillers that typically keep her awake, however lead to her sleeping on and off through the night. We took this to mean that she was in serious pain, however since she can’t tell us where we were unable to pinpoint it.
The next morning she was the same so we decided to call MSK and speak to one of the doctors directly. Dr. Kobos called back and asked Nicole to bring Sally in right away for an X-ray instead of waiting for her scheduled appointment the following day. After work I headed up to the hospital to help out as Nicole had to bring Thomas and William with her. I got off the subway to a text – Broken leg 2 places.
It turns out that Sally had broken her left leg while climbing the stairs. There was another older break, which we believe is from weeks ago when Sally was in similar pain. They put a cast on her leg and we are due for a follow up visit next week.
The disturbing part of all of this is what caused the breaks. Sally didn’t bump her leg or fall, both times she was simply putting normal pressure on her leg when it broke. We’re told that the steroids she has received throughout treatment the last year have likely weakened her bones to the point where too much pressure will lead to breaks.Here is the video of Sally breaking her leg the other night. It is hard for us to watch it, but want to share it to show how simply putting pressure on her leg caused the break. Click here to view. This is what we are up against.
We are trying to gain an understanding of what this means for her therapy. Do we continue PT/OT knowing that we may be damaging her body? Are we supposed to stop trying to get her to walk until after treatment? How do we strengthen her bones in the meantime? We’re exploring a visit to a pediatric orthopedist to give us some insight into how to proceed from here. Today Nicole spoke with the therapist and said the therapy will strengthen her bones, however it also opens her up to further breaking of her bones.
This also opens up a Pandora’s Box for Sally’s treatment. If the steroids are weakening her bones, what happens when we resume the intensive chemo in January? Will her body be able to handle eight more months of steroids? Are we going to have to weigh her survival with long term effects?
That’s a lot of questions and we don’t know if we’ll get clear cut answers to them. Nicole observed this morning that we may have some very difficult decisions to make in the coming weeks and months, when we thought the hardest decision we recently made of taking a break and resuming intensive chemo was behind us.
We are frustrated that both times Sally has made developmental advances, she has incurred injury. We’re angry that current outdated and cruel treatments are causing her body so much harm. We’re upset that she continues to suffer so much pain. We are sad that Sally may not walk before her third birthday. It’s a wide range of emotions and there isn’t one word to describe what we’re feeling right now. We both shared a long hug this morning as we know this is about so much more than a broken leg. Between the seizures and her bones breaking, Nicole and I are probably the most emotional we’ve been since Sally was first diagnosed as the treatment is really taking a toll on her. We’re scared.
We recently switched Sally’s Christmas stocking out with one that has a little girl dancing. Sally loves to dance, and we are determined after treatment she be able to dance just like that little girl.
Please keep Sally in your thoughts and prayers.
I’m so sorry! My son is a cancer survivor and suffers from low bone density from treatment. He, too, suffered the same break doing normal kid stuff. After a full leg cast for ten weeks I demanded answers. A dexascan showed extreme low bone density. I was overwhelmed with yet another side effect. He currently gets an infusion of Pamidronate every three months and his most recent dexascan showed an 11% increase. I was extremely hesitant adding another drug with potential side effects, but for once his body has handled it well. It may be something worth mentioning to the ortho dr.
Prayers and well wishes with you all! Sally is beautiful and resilient! Happy Thanksgiving!
Please know that Sally, Nichole, Matt, Thomas & William are in my prayers.
So unfair and cruel! When will you guys get a break?! We are praying for Sally everyday. Hang in there!
I’m so sorry for everything you are all going through. I saw her video this morning, & I hope you don’t mind, but I shared it along with another request for people to sign the petition for funding at thetruth365.org, & hopefully to find more people who will join your groups of prayer warriors for your sweetie. I’m so sorry that you’re left between bad & worse right now, but I admire baby girl’s tenacity, and your strength. I wish you all more of the same in the coming days, as your path isn’t an easy one. She’s beautiful & strong, & I firmly wish/hope that she will get her miracle, & live a long, long Cancer-free life.
I have been following you guys for a while now and typically just lurk, but I wanted to say how amazed I am at the strength that all of you have shown and continue to show as more hurdles get thrown your way. I read your blogs/FB posts and watch as Sally grows, and though I don’t know Sally, I feel sad when I read posts like these and elated when I see things go well. You all have also made me more aware of how much the system has failed in making better options available for children with cancer. It is sad to see the damage that these children go through to try to get better, simply because there is not enough value in doing the research to create better treatments. Well I just wanted to let you know that you all are in my thoughts and your message is getting out to people and making a difference. I wish you guys a wonderful (and uneventful) holiday season.
This is heartbreaking. I pray for your little girl to get better and win this fight once and for all.
There are no words… Know that Sally and your family are in my prayers. I am thankful that Sally has such loving and courageous parents and two understanding brothers to help her through this trying time.
I am amazed at how well you both are handling all of this. Your courage is giving strength to Sally, William and Thomas (and to each other). I am so sorry that Sally was in pain but her smile and happy disposition in her pictures fills my heart with joy. I pray that you have a peaceful Thanksgiving and Christmas. I have said this before that the decisions you make for Sally are very hard but you will both make the right ones for her with the guidance of her doctors and the love you both have for Sally. I continue prayers and nothing but good thoughts for Sally and all of you. Again, please try to have a great Thanksgiving.
I am so sorry that you have even more to deal with during Sally’s fight. Your video was so hard to watch especially with knowing what Sally is now dealing with on top of fighting cancer. Your family is so strong! I wish I had the words to make this better or to put your minds at ease. My family will continue with sending love & prayers to you all from Wisconsin. God Bless
I woke up praying for Sally this morning. My husband and I were both in tears last night when I shared your video and explained the situation to him. My heart is breaking for you guys as you weigh all these heavy things and try to find the best path forward. You will choose the best way for Sally, she is so blessed to have you as parents and advocates surrounding her with love and constant support. I believe that makes a huge difference.
I do have the image in my mind of her dancing around once she is off treatment. Her stocking is perfect. 🙂
Always praying for our baby Sally to grow up healthy & happy . I wish I could see you both & give you a big hug. Small steps Matt let’s get her through each day & I am sure our prayers will be miraculous . We all hate Cancer & these treatments are too harsh. I have to remind myself of a friend of mine who was treated at MSK as a child in the 70s with experimental drugs. She has made it through & by the grace of God is living a full life as a 50yr old. Sally will get there too.
So heartbreaking! I can’t even imagine what you guys are going through. Sending love and strength to you all…you have been blessed with a strong little girl, she’s a fighter and with the amazing support around her, she will beat this. Peace and prayers…
My heart goes out to all of you. As a parent I can not imagine your anguish and worry. I hope and pray that Sally will continue to have the strength to fight this awful disease. And overcome the everyday obstacles.
Hi! I just wanted to reach out to let you know how incredibly strong I think all of you are. You are an amazing family and Sally is beyond precious. I follow your story and pray for Sally often. She seems like such a little fighter and you will get through this. Im sending prayers strength and love your way….
I can hardly believe that this bone weakness has happened to Sally, but love the picture of her trying to stand withe cast n her leg. Obviously, she sees her brothers doing things and wants to follow their example. Prayers are with you as you try to make decisions around all the unknowns.
I am so sorry, Nicole and Matt. I can’t think of the right words to say, but just know we are thinking of you and supporting you while you go through this unbelievably difficult time.
All our love, Michele, Joe and the girls
How generous of SALLY to give her body so that the doctors and staff can/will learn about this dis-ease and perfect a cure. How generous of SALLY to give her strength, love, spirit and laughter to her expectant family. GOD will not let this generosity go unrewarded.