Days +22 to +25: Baby Steps

The past few days have been filled with more ups and downs. Last Friday night, the transplant team decided to stop his IV nutrition, which is ultimately a good thing because Ezra has to be eating and drinking on his own in order to go home. The transition to oral intake, however, is difficult and there is a lot of pressure for him to do a lot of drinking (the medical goal is way more than you would expect for a 4 year old) and eating when he still doesn't feel well. The weekend was very rough, and although Ezra was trying, his stomach did not seem to be ready to return to eating and drinking. 

Thankfully, yesterday he seemed to have turned a corner and was able to eat small amounts of food and keep it down. He has also been drinking as much as he can. Hopefully, we are on the way to getting back to a normal diet, as long as that tummy cooperates. Always the trooper, always the fighter.

Ezra's counts are still bouncing around quite a bit. We understand that this is normal at this stage, but it still makes us nervous. Ezra is still very early in this process and we're in it for the long run, but given our prior experience we are grasping for as much reassurance as possible.

We're feeling some sadness that Ezra will be missing sukkot this year. He loves being outside in our sukkah. We are just hoping that this is the last sukkot spent in the hospital.

September is childhood cancer awareness month, and the subject has been on our minds. While Sloan treats diseases of many different types, the majority of patients are cancer patients. Sometimes it is so crowded here that you start to think that every child has cancer. Certainly in the abnormal world we live in, we see more sick children than healthy ones. We have witnessed miracles happening here, and we have seen the devastation caused by pediatric cancer. When a medical code is called for the Peds floor, our hearts sink and we try to pretend that we don't hear the doctors and nurses running down the hall and the machines ringing, and we try to think that everything is ok, when really nothing is.

Some of you may know the shocking statistic that only 4% of federal cancer funding goes to pediatric cancers. Children aren't just mini adults and shouldn't be treated that way. Their bodies react differently and treatments should be specific to pediatric cancer, and not just shrunk down versions of treatments for adults. There are many excellent charities that fund pediatric cancer research. We don't have a favorite one, but certainly Sloan-Kettering is one of the places making great strides in the treatment of pediatric cancer.

One of the many things we have never figured out about this place is why there are only plastic spoons in the pantry. You can certainly get utensils from food service, but many families store food in the pantry refrigerators for their child or themselves. It is obviously very difficult to prepare food with just a spoon. And when your sick child wants something to eat pronto, you don't want to wait on food service. So, we decided to take matters into our own hands and bought a case of 1000 individually wrapped plastic forks from Amazon and have secretly deposited a batch in the pantry and will continue to refill. Our little contribution to making life slightly easier around here. Shhhh...don't tell!

Wishing everyone a chag sameach!