The 3 options we have are 1) do nothing, wait and see, 2) radiation of the forearm, or 3) amputation.
The wait and see is not a recommended option for her, since they were not able to get all the cancer cells out through surgery, because of the location and her tiny arm. Doing nothing would almost guarantee another growth in that spot or elsewhere on her body.
Radiation: This is the option we went into the meeting with as our most likely choice. Most of it we already knew, but some things we didn’t know and some we hadn’t really thought about yet. Once we got more details about it we changed our thinking slightly. The radiation would be M-F for 7 weeks. She would need to be put to sleep for it each day. The treatment itself would be about 10 minutes but with the sedation/recovery etc it would take about 2+ hours each day and she would also see the radiologist and oncologist 3-4 times a week on top of the radiation.
Immediate effects of the radiation are tiredness and her arm would slowly develop a “sunburn” type look to it throughout the treatment involving blistering, redness, pain, etc. Over time that would heal but one of the long term effects is permanent skin discoloration, it could look tanned or leathered, but it will definitely not look like her other arm. I was thinking the radiation would just affect the skin on the inside of her forearm where the surgery was, but it will affect her entire forearm.
The other longer term effects are that it will stop the growth of the forearm and it will slow the growth of her hand. So the size her arm is now will be the size her arm will be for the rest of her life. After radiation there will be a lot of scar tissue in her arm and her arm will feel hard and almost “wood” like on the inside vs the soft and supple way your arm should feel. There will be reduced function in her hand after radiation and over time because of the scar tissue her muscles will not work as well and her hand function could be diminished even more. Radiation can also cause a secondary cancer to show up. Her sarcoma could also come back there or in another part of her body as well. There is no guarantee. Obviously, radiation greatly reduces the chance of her sarcoma coming back in her arm, because it kills those cancer cells. But if it did come back in her forearm, amputation would need to be done at that point, and by that time it would need to be amputated above the elbow, because the radiation would have affected her arm up to her elbow. The amputation after radiation might need to be done at 3 years old, 8 or 15 we just wouldn’t know and we need to keep that in mind when making this decision.
Amputation: This was a scary thought to us a few weeks ago, but after hearing about the radiation, this option doesn’t really seem any scarier than that. If we chose amputation first, it would most likely be below the elbow, thus saving her elbow joint and allowing for a little better movement and use of her arm, it would also allow for a better prosthetic because we wouldn’t need one with that joint. She would be in the hospital for 3-7 days and healing at home would be a few days of “laying low” but otherwise she will basically be good to go. Amputation obviously eliminates the chance of the sarcoma coming back in the same spot, because we removed the spot, thus giving us better odds of no-recurrence. It could still show up in some other spot at some point, 3 months, 4 years or 10 years later. We still have some questions we need answers to such as, extent of pain of the arm that is left and for how long, is phantom pain as much of an issue for children as in adults, etc. We are waiting on a call back form the surgeon to address those concerns.
Either way she will be having scans done every 3-6 months for the next 2-3 years and then every 6 months for the next few years and then yearly after that for the rest of her life.
We have not made a decision yet, we have calls into a few other “experts” to get a couple answers to some things. We need to decide within the next week or so.
If we went with radiation we would begin the process in 2 weeks, have an initial set up appointment and then the actual treatment would begin about a week and a half later and go for 7 weeks.
If we choose amputation there is no “immediate” rush but it would also need to be done in the next 4 weeks or so to have the best results.
We have a lot going through our minds, such as what if this were me or Adam and if we would’ve had this as a kid what would we have wanted our parents to do for us. We both said we would’ve wanted the amputation. We wouldn’t have wanted to go through life with an underdeveloped, pretty much useless hand, only to then possibly need it amputated at 8 years or 15 years old. We both thought that would be a traumatic event we wouldn’t have wanted to have been put through. If we choose radiation we are putting her through all that and then still possibly needing to amputate. If we choose amputation and do it now she will have the best healing, the least amount of traumatic feelings, etc. She would have just grown up this way. We are leaning a little more towards amputation at this point but we are still thinking on it and praying on it.
I look at my little girl and think about how she has changed my life, how she brings a smile to my face EVERY single day, how my world would be so different had she not been in it. She is tough, she is resilient and she will fight her way through anything. She is a beautiful little lady and we just want her to be with us as long as possible and we will ultimately do whatever the doctors feel is her best chance of living a long full life. We will not let her use her impairment, in either case, as an opportunity to quit, or to have people do things for her. We will use this as a teaching tool for her and the other kids about compassion, perseverance, finding a way to make her dreams happen and to find a way to get what we want in life no matter how hard. I feel in my heart, this little lady is going to teach our family more things than I could ever imagine. We love her more than we could ever say and we are very blessed that God gave her to us.
Thank you for all your prayers and we ask that you continue them for God’s guidance in this decision.