The stresses of a family taking care of an infant battling Neuroblastoma

We brought Saoirse home last night after being in the hospital for 6 days receiving a Chemo cycle called ICE. ICE is a combination chemotherapy that uses three drugs: ifosfamide, carboplatin and etoposide. It is pretty powerful stuff. Saoirse had already had 6 cycles of the standard chemo for High risk amplified Neuroblastoma stage 4. They had to do another cycle of more powerful chemo because the doctors at Sloan-Kettering found cancer in her bone marrow. All other scans showed negative, which is a good thing. The fact that Children's boston showed a negative marrow biopsy and sloan showed positive is chalked up to sampling. Plus Sloan tests the front of the hip as well as the back of the hip, so they have 4 samples vs 2 at children's. The key is that we found it and fingers crossed that the ICE will get rid of it. Now, along with this ICE comes a rough week for Saoirse and a stressful one for Kezia and I. The Carboplatin causes a lot of nausea and vomiting, so Saoirse is on 4 different types of anti-nausea medications. In the hospital these are given introvenisouly, but here at home they are given orally which is very difficult because they tend to make her vomit her lunch. 


Now, the stress. I am starting to see it in Saoirse's eyes that she hates this. Her eyes are asking "why" and help me. She has such a strong personality and is learning more how to communicate her distress. It kills me to see her go through this and I just want her to have a normal life and it upsets me that this is a normal life to her. She is 17 months old tomorrow and she knows how to put on a blood pressure cuff and knows what to do with a stethoscope and thermometer. I feel so helpless because I can't take away her pain and nausea and make her better. It is a very powerless feeling and I am sad a lot. I deal with this by crying and talking, and now writing. I will admit that I let my frustrations build and it comes out sideways sometimes. But I try to always keep a smile on my face and keep looking up. 


This is important because when she takes her medicine she hates it and if she sees me stressed or frustrated then that makes her more tense and stressed. Kezia hates puke so she gets frustrated at the thought of Saoirse puking while taking meds and if she does, Kezia gets even more frustrated, then I get frustrated, but I have to try to stay calm because I can see Saoirse react to Kezia. Kezia hating the puke is one thing, but if Saoirse does throw up that means that she has to retake all of the medicine. Ug.. 


This is not easy. I will write more later. There are so many things to do around the house and I have to get things put away outside for winter. Luckily it only snowed a couple of inches here in Danvers so most of it is already melted.