Day 156 on the Road to Recovery…
We have just completed our 3rd of 8 post-surgical chemo rounds today. Although tired and worn out from the past couple of days, as always Sophie has kept her spirits up and continues to makes us laugh daily with her old and new tricks, jokes, and games. Just this morning, while still groggy and full of anti-nausea meds, Sophie refused to get out of her bed until we all sang “5 little monkeys” together in the room. We are attributing this to the multitude of drugs and level of tiredness she was experiencing earlier, but is also just a brief but amazing example of how resilient and fun she is, even while undergoing treatment.
Along with a number of other new things, one of Sophie’s favorite activities is “playing nurse” to her multitude of “babies” or stuffed animals at home. You can often see her walk through an entire “exam” with her toys, which consist of “giving them an arm hug” (blood pressure check), checking their temperature with her pretend thermometer, putting a light on their finger (to check oxygen level) and listening to their chests with her very own stethoscope. Her doctors and one of the hospital psychologists have assured us that this is actually extremely normal behavior for someone her age, and this is common “play-practice” for other kids her age as well.
The last few weeks have been pretty uneventful otherwise, or in our case, really great. Due to the warmer weather (hopefully meaning fewer colds, coughs, etc.) the doctors have allowed us to ease up just a bit on our strict rules of isolation, which has enabled Sophie to have a few more playdates with friends and cousins. We were able to drive to CT for a Chai Lifeline event. We were also able to thoroughly enjoy Pesach, without a single trip to the hospital in between chemo-treatment. This was markedly different from the past chemo rounds and an absolute treat for us, and one we absolutely do not take for granted. Finally, we have also taken numerous trips to the playground and engaged in other energy-filled activities, which Sophie not only loves, but are also very beneficial for her continued recovery from her lung surgery.
Many people often ask us whether it is safe or healthy for her to engage in high-energy activities due to her new lung structure. While it may be counter-intuitive, our surgical team has recommended Sophie doing things such as jumping and climbing in order to help her lungs recover from the shock of surgery as well as strengthen her core muscles which were slightly weakened through non-use after surgery.
Next, we go through our 3 week swing between chemo treatments knowing that at any moment Sophie could get a cold or fever and end up back in the hospital… but for now, we are appreciating every moment we have at home as a family never taking a thing for granted.