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Yes, that is disappointing…two whole days? Dr. Burnell had told John that Mathew’s chemo was moved back a week to coincide with his first week of radiation. I’m not sure what happened to that communique. She is away today and won’t return until Monday so maybe Mathew will go back on Sunday evening and be discharged on Monday? Knowing Dr. Burnell however, I think she will go for the chemo. She doesn’t like to give that cancer one iota of a chance to breathe. She probably saw Mathew’s bloodwork improve and decided to go ahead with next week’s inpatient cycle of chemo.

Mathew only needed 4 units of blood this time and 2 platelet transfusions. His Mum however (me) needs some of that wool in my brain to clear out. I am so very tired! I will either nap in his room or wait until John gets home before finally settling in for a LONG, winter’s sleep tonight. Those hourly bathroom runs with Mathew, around the clock, are sleep-depriving. I often sleep through the quiet rustling of the nurses carrying out their night checks and medicine refills in the room. I hope I’m not snoring….

One of the nurses said the nicest thing on Saturday. She peeked in and asked me if we needed anything at all. She didn’t like to disturb us because we are known as “family-oriented”. I like that. I never thought about it; Mathew is our son and this is what parents do ~ support and help your children when they need it. Mathew trained me well over the years for this particular role; spending hours sitting quietly and amusing myself in a small space with him. With his disabilities and subsequent lack of friends I filled that role for him. We have hobbies we like to do together and I am used to spending a lot of time looking at movie reviews, his games, etc. Little did I know how well that would fit into this situation further on in his life. I read quietly or watch some tv when Mathew naps in his hospital room. I don’t like to leave him at all because you never know when he is going to stumble and fall or need a hasty run to the bathroom. He needs help with all of that and if I step away that inevitably would be exactly when such a situation would happen.

I met another person with Ewing’s Sarcoma in the hospital. She is the mother of a 5-month old baby. She’s fighting with every inch of breath and let there be something out there to help her win the battle. I want to see her beat it, go into remission and get on with raising her child with her husband.

If you could see and hear the pain and suffering on that floor. If you knew what cancer patients are subjected to in the name of treatment and for the chance to live you would be SHOCKED. There is still too much silence about the little ways life changes, the permanent disabilities that occur and the daily indignities that leave them constantly in pain, discomfort or exhausted. The strain on them and their loved ones, the suffering we feel watching our loved ones in pain, sometimes alone and miles away from family and friends. It isn’t enough people. Awareness is merely the start and if you are going to be aware then educate yourself by reading the stories and looking up blogs written by cancer patients. It is awful. Then, let’s get past the awareness and fund research to KICK.ITS.ASS!! Find new protocols and treatments that are better, more effective and less invasive on patients. On some bad days Mathew tells me he’d rather be dead than have to go through more of this hell. I want to see change.

Spread the word.

UPDATE: Hospital just found the Doctor’s note moving his chemo to 27 January so he DOES get the week off! YIPEE he gets a whole week to rest and recover ~ we all do!!