Tuesday, November 18, 2014 We made it through all 11 appointments last week!! It was a very busy week with speech, OT, PT evaluations happening. We used the wheelchair to get in to the facility so she wouldn’t be so tired to actually do the evaluations. We will start with two sessions this week focusing on OT and PT. Her speech therapist feels like cognitively she is about where she was the end of September. We will start back with her after radiation ends on December 9. We have 15 sessions left and are more than halfway done!! We will have about a month off to enjoy the holidays and let the radiation continue to work. Our MRI will happen in January and will determine our next step in treatment. It was good to go to these appointments. They helped Victoria verbalize how she is feeling or not feeling on her right side. Everything is muted. It is like she is wearing gloves. When I rub her arm she can barely feel it. When she walks it feels like her foot is in a block of ice. Hopefully, they can work to recover some of this feeling. We did see the ophthalmologist again and got stronger prisms for her glasses. She put them on and was amazed she could see just one of everything. However, by the next day she was seeing double again and continues to see mostly in double vision. That was a great disappointment to us. We wanted to lift at least one burden from her shoulders. So far her blood counts continue to be okay and she is allowed to be with people. She was active and awake last week. It was good to see her have some energy. She even got to go out to lunch with a few friends. And her home school teacher noticed how she could be engaged the whole hour she was here. During this whole (5 months tomorrow) ordeal she has rarely complained. Last night, she started asking the tough questions: How much longer? How is the radiation working? How do they know it’s working? Will my arm and leg get better soon? When will my face not be fat? Will I lose this weight? I tried to be as honest as I could but how do you talk about cancer with your daughter? There is no easy way. We cried together. I pray for God’s guidance as the questions get tougher. There is no way we can do this alone. Several events happened this week that were both good and bad. (Like most of life I suppose.) First, we were approached by her oncology team to do Make A Wish. Victoria was excited. And it was good to see some joy in her eyes. On the other hand, it was sad to realize we are part of that group of people who qualify for Make A Wish. The whole family is helping her to think of what might make her happy as it’s hard for her because she asks for so little. The other one happened at all places but the DMV (Department of Motor Vehicles). I knew I needed to go get a handicap sticker with her limited energy and the wheelchair. I walked into the office early in the week and every chair was full and people were standing. I turned around and walked right back out! So, on Friday, I told Brett I was taking a book and would wait as long as it took. I walked in and there were 3 people at the counter and not another soul in there! And I got the only person at the DMV with a heart!!! She asked if the permit was for me. I said my daughter and she immediately said this will help you done at Children’s! I shared my daughter had a brain tumor and she shared her story about her niece battling leukemia at age 17. It was a brief interaction lasting less than 10 minutes but so profound. As I got ready to leave she said looked me right in the eyes and said, “Remember you are stronger than you think.” And I walked out of there with tears running down my face. I passed a man and his teenage daughter going in. Only when I got in the car did I realize the irony of the situation. Victoria turns 15 ½ next week. I should be at the DMV getting her the book to study for her driving permit. Instead, we got a handicap sign. Despite this somehow I am trying to cling to my faith but it has been so hard. I pray just for any kind of blessing or break right now. Some little sign that can give us hope. Thank you for the many cards, texts, love and encouragement you have given us. We love to reread the cards and I wanted a way for us to display them. I think I found the perfect way. I will upload a picture of our kitchen wall later today. In that way we can be uplifted and include you in our prayers as well. This verse continues to be my go to verse. It shows up in all sorts of ways in my life. Isaiah 40:31” Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” PRAYERS: Please pray that God helps me to order each day so that I am doing what He wants me to do and what is best for Victoria. That we could somehow get the double vision corrected so she could watch a little TV or read. Most importantly, that our God, the Divine Healer, would touch her with His healing touch and destroy this tumor. Tim and Joan
Posted on: Tue, 18 Nov 2014 12:48:19 +0000
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