Fragile

Today in the elevator was a fragile little boy sitting in his wheelchair. He had a N95 mask on that was too big for his face. He was hunched over and bald and his head was lowered. He was being pumped full of antibiotics and fluids and he just looked so sick . His little body could have brought anyone to tears. As a took a step back, it almost brought me to tears, and then I realized this little boy was my son. Even 9 months later I wonder how we got here. It is hard for me when is completely strong and sarcastic and the next moment he is so beaten down by chemo. Currently, things are a blur. I haven't slept, my back hurts from the joke of a bed I sleep in and I want to cuddle my other babies too. It is always so hard to kiss them goodby when I know I will most likely be gone all week from them. I miss my husband. Between out of town business trips and back and forth stays in the hospital we haven't seen eachother for a month or so, just in passing. How is that good for anyone? Gavin was 9 months old when Spence was diagnosed and it has been 9 months since diagnosis. Half of his life he has been dragged back and forth and he has spent days apart from me. This has been such a drag through the mud, run over by a hundred Mack Trucks kind of year.
I am going to move on from my sadness and get frustrated and mad for a minute. Bear with me. Spencers fever is not going down or away. It is not fair. It just really sucks, for a better lack of words, to have one thing after another go wrong. He is not in as much physical pain as he was last time but he has horrible mucositis (mouth sores that can go from the mouth all the way down to the bum). Usually they stay in his mouth but this time they are going all the way down, impeding his eating. He had a standard ct scan today. After 5 days of a high fever they need to make sure that the brain is functioning properly. Well the ct scan showed abnormal impaction in his sinuses. Because he has no white blood count they are very concerned about a fungal infection and decided that he would have to go in for an immediate if not emergent nasal biopsy. We had this happen last time on a not so immediate but precautionary measure and found nothing but this time it will be a little more invasive. This is going to give us a handful of more days in this place. I am sooo thankful to have the healthcare we need to keep him healthy but I want to be home. I want all of us to be home. {Deep breath, we only have 3 months left of inpatient hospital stays}. it is hard to keep positive when you are so tired and so sad from watching your baby cry because of all the crappy procedures and poking and prodding. This is not a glamorous life.
An hour or so later....
Deep breath out. Our beloved ENT Dr. Grimmer, came in to do a quick and shallow scope of his sinus. He assured us that it is not a fungal infection and a nasal biopsy is not needed. He diagnosed him with a regular, normal sinus infection, which all of us in the family have been suffering from, and said it will just take a little longer than normal to recover since he has a zero ANC. So I am wrong to say that things keep going wrong because this is all right for the moment. I will not jinx us. Also, Dr. Fluchel, the attending here this week, and our oncologist had a good talk with us too. He thinks he is doing well considering and is guessing that we will most likely have to reschedule his next chemo but reassured us we wouldn't have to be here for Thanksgiving. Phew. Today I have a headache and am ready for a good sleep in a good bed.