Steroids

Wednesday, January 6, 2010 - Saturday, January 9, 2010

It's been a crazy few weeks I will say. We've been busy constantly and it feels like it hasn't let up a bit! Last week Ed and I took ALL four kids with us down to Iowa City to stay in a hotel for a few nights. Oliver had his treatments daily at 12:45 pm and we decided that since there was supposed to be a huge snowstorm, we left Wednesday morning and didn't get back until Saturday evening. My grandma was having a valve replacement (open heart surgery) that Friday and since she hadn't seen the newest little man of the family, Phineas, we decided to take all of the kiddos with us! We did some shopping for some snacks and swimsuits, since the kids wanted to swim and we were very glad we went down early because the roads were HORRIBLE!!

We got to visit with my grandparents, my brothers, my mom and later my aunt and cousin as well. It was really nice to be with family. His treatments have been going really well. One thing that really concerned us was that he was having troubles swallowing. Whenever he'd eat, he'd choke and start coughing. Dr. Menezes had said during our very first appointment that Oliver had absolutely no gag reflex. He stuck a tongue depressor all the way back into his throat and he did nothing. Every time he'd eat we would tell him to take smaller bites, drink water and not goof around while he's eating. It's scary to see him start to choke on whatever he's eating.

On Thursday evening he said that he was actually having troubles swallowing his saliva. Yeeeeaaah... kinda scary! So we talked with his radiation doctor about what we can do for him. He didn't want to start him so soon on steroids because of all the possible side effects of it. We also told him that his left side is getting weaker as the tumor is pressing more on the right side of his brain. Because of the tumor in his brainstem, it is twice the size it should be which is causing pressure on certain areas of his brain. It's like his body is forgetting how to swallow right now. He said that it is devastating because all of the vitals are run from this part of the brain. As the tumor continues to grow it will begin to affect his heart and lung function. We are doing radiation with hopes of shrinking the tumor.

We still don't know what to do about chemotherapy as there is no real benefit to it with this type of tumor. It won't prolong his life and it would just make his last months here unbearable as he'll be very sick. Obviously different people react to the medications and therapy differently, but we know the possibilities of what it can do to him and I just can't decide what to do. It's such a difficult decision because we want to do all we can do for him. I know several people have asked us about St. Jude's Children's hospital, but we don't want to have to relocate elsewhere because we have other children, Ed HAS to continue to work, we want to stay near family and the biggest thing Ed said to me is that if Heavenly Father wants to heal him, he can heal him whether or not we are here or halfway across the world. We want to keep things as normal as possible for him and that is why we are traveling to and from Iowa City on a daily basis. Our other children need things to remain as normal as possible as well. We are ALL in this together and ALL of our lives are changing whether we are ready to face it or not. You never know what you will do or how you will think or feel until you are face to face with certain situations.

Anyways, so his swallowing is compromised, he's weaker on his left side AND his right eye seems to be shifting closer inward. If it was just one of those symptoms, he wouldn't have placed him on the steroid so soon, but since he's having several neurological difficulties he said we should probably start him on a low dose and discontinue his anti-nausea medicine. We did for a few days, but he was still nauseas so he's on both of them now. He may have an increase in aggression, acne, change of personality, restlessness, hyperactivity, insatiable appetite and puffiness in his face almost to the point where he may be unrecognizable. *Sigh* What do you do??? We just have to try and make the best decisions that we can for him and hope for the best.

On Thursday evening, before Oliver told me about his swallowing, I was online researching some things that the social worker had told us about. He told us about Dance Marathon and all that they do for children with cancer. There are a couple of summer camps they offer as well. One camp is for the whole family to go to, another is for just Oliver and one Eden can go to as a sibling of a cancer patient. I don't know if they will go on their own, but we are excited to find out more about it since Ollie loves going camping! I was reading their website and stumbled across some biographies of the children they had helped and I came across one that was in the past tense because he had passed away and I just started crying. Then I clicked on a link called 'Dancing in Our Hearts' and it was a huge list of all of the children who had lost their battle with cancer and I just envisioned Oliver's name to be on their in a short amount of time and I just lost it. I was a mess. I was in the hotel room on the bed just sobbing. I called a close friend and talked through some of my feelings. I feel so out of control, like my physical body just can't take the intense emotions that I'm feeling right now.

Friday night we went out to dinner with the whole family down in Iowa City and as we got up to leave, Ed mouthed the words, "Oliver just asked me 'Is death quick?'." I was completely shocked and saddened. We got into the van and I heard him ask that same question again. Ed told him that we'd talk about it when we got back to the hotel. HOW does a parent answer that question? It just broke my heart to know that he's thinking about death already. It may be because his great grandma was going in for surgery, but who knows. I feel like he's being prepared for death. A few days earlier he had come up to Ed and I and was crying and said that he won't be able to color pictures when he's dead. That he won't be able to cuddle with us anymore. Again... I was dumbfounded to hear these comments just out of the blue. From out of nowhere. It sickens me to think that death is always on the forefront of his mind. Ed told him about how Jesus cuddled with his apostles and how they were grown men, but still showed that love toward one another in that same way. Ollie said that he won't be able to cuddle when he gets older and then he said that he doesn't want to grow up and get wrinkly. We laughed a bit at that and he giggled a little as well. I just don't know how to answer some of his questions. They just leave me speechless. I've relied a lot on Ed's words and his knowledge of the gospel and the plan of salvation. I can only tell him what I know and that Heavenly Father knows all we are going through and will ever go through in this life as well as in the next. Ed assured him that there will be family waiting to welcome him to the other side when he passes away... however old he happens to be. He talked privately with Oliver in the room and seemed to put his mind at ease for the moment. Please keep praying for strength and peace for ALL of us at this time, especially Oliver. I pray that he will be able to handle all that comes to him during these next few weeks and months. This is so hard...