Friday, August 3, 2012
A good day
Today was the first day that we did not have to give Noah the steroid. YAY. The steroids have been awful. The mood swings and emotional ups and downs were too much to handle. He would scream at us and take alot of his anger and rage out on Holly. It has been a very stressful month. But yesterday he had his bone marrow aspiration done (extract bone marrow from inside the bone) and a spinal done to inject chemo into his spinal fluid and extract some to test for leukemia. Hopefully we will get the results on Tuesday. Then that will tell us how much cancer is left in his bone and blood. We are hoping for zero. That will then determine the next phase of treatment called consolidation. It will also give us about a 3 month break from steroids. Thank the Lord. Noah has gained 15lbs in less than 3 weeks. He is huge, swollen and very unsteady. He falls alot because of the weight, but also because of a drug called vincristine. It makes his feet kind of sleepy and he can't life them properly, causing alot of stumbles. Very hard to watch my active son just a month ago go to a boy who cant get out of the van by himself, can't get up when he falls down, can't even pull up his pants by himself. Its heartbreaking.
Now that the steroids are done for a bit, the weight and swelling should start to come off in a few weeks. His appetite should resume to what it was pre-cancer, which will also be a nice break. As he eats every 20 minutes. Hopefully he will want to go outside again and do normal things. Today we went to the parade in town. It was so nice just to be out, all of us, having fun together. But its still there. I still think about the cancer. To anyone who doesn't know us, he looks like a really over weight kid. So even as we are sitting there at the parade, and people are handing out candy, I think to myself "what must those people think of my son. Do they want to give him candy? He looks like he doesn't need any candy". And yet he actually doesn't eat anything sweet, its the steroids. But it just makes me so aware of our situation. He still has all his hair so he doesn't look like a kid with cancer. It's just hard. Even going to a parade.
We now have to start thinking about putting in another port. I can definately see the advantages of having one. He would not need to be poked every week for the next 3 years. Rather just have his port accessed. But I still cannot get the image of his open chest with the port in plain sight out of my head. Nevermind then having another surgery. Its so hard to know what to do. What is best? I want to make everything easier for Noah. Everything that I possibly can, because he has already been through so much and its just the beginning.
There are good moments too. I have found that with the lows there come the highs. He can be so loving and wanting hugs, which was not what he was like before. Which was one of the differences that I had noticed when the lymph nodes started to blow up in November. He can be extremely funny. He was making faces at me and had us both cracking up. He laughs easily now, and can be very sweet. Hopefully those traits remain.
It has changed me as a mom. Before the cancer I was finding it hard to deal with all three kids. Noah's behaviour was exhausting. But now looking back, it was probably the leukemia affecting him. It was hard to manage them and deal with Noah as well. And now, even though its a thousand times more exhausting, physically and emotionally, I think I am a better mom. I treat all my kids better. I don't scream at them, I don't get as frustrated. Its very strange. Sometimes I think God feels he needs to show me the way more extreme wise then others. I guess that's why we trust Him. He knows best, because I sure wouldn't choose having one of my children to have cancer to teach me how to be a better mom.
We were at a wedding last Sunday. It was beautiful, young couple, just lovely. When it came time for the father/daughter dance and the groom/mother dance, I could not take my eyes off of the groom and his mom. His mom was in tears, dancing so closely with her son. It was so beautiful. All I could think about was how badly I want to be in her shoes with my son at his wedding one day, dancing with him. I want him to grow up, and get married. To have children and grandchildren. Not to die from cancer before he reaches 10 years old. I watched the grooms father kiss his son on the cheek and give him such wisdom in the years of marriage to come. I want that to be how Chris will be with Noah in 20years. I want Noah to know how much we love him. And I know that he does, but I want him to grow up knowing that we are here for him always. Not afraid to express our love to one another.
I think this experience, in its short one month thus far, has opened my eyes and taught me more about love and grief and humility and faith and hope than all my other experiences of the like combined. And although I am thankful for what we are learning, and embracing it truly, I wish I knew the outcome still. I want to know that at the end of this, we will still be a family of five. Healthy. Because although I do feel some hope in what I read about survival of ALL leukemia, there is a part of me that believes Noah will die from this cancer.
Prayer requests: complete healing for Noah. For Holly and Coltan to pull through this experience without too many negative 'side effects'. Renewed faith and hope for me (Melissa). That the next phase of treatment will be easier on Noah and all of us.
Praise: we have been given so much food, it has been a huge blessing. Our parents are amazing and have supported us spiritually, financially, and emotionally every step of the way. We have never felt alone.