Yesterday was Noah's first clinic visit to receive his chemo meds by his central line. When we got there the nurse removed the steri strips and to my horror, seen a gaping hole in Noah's chest with the port clearly visible. I felt sick to my stomach. How could I have missed this? They assured me that this was not our fault, as we were not suppose to remove the bandages at all. But I had been concerned about it since Tuesday already. I had tried to look at it all week, and I had carefully lifted the strips when they had become loose and did not see anything that looked like that. So we think it must have opened Thursday night. So, they could not administer the chemo through the port, they had to start an iv in his hand.
By this time it was 12:30pm, we had all three kids with us at the Cancer Care Clinic and they told us the earliest that they could do Noah's surgery was 6pm that night. We thought it would be best then if we took our other kids back home to be watched while we traveled back for 6 for the surgery. As we walked in the door at 3:15 that afternoon, the surgical ward called saying they could take us at 4pm. I was absolutely furious. Had we known that they could take him that early, we would never have left the hospital. Now, we have spent over 3 hours in the car and need to go back yet. Then when we got to the hospital and spoke to the surgeon, she asked us why we left. She said that she was told we had 'things to take care of'. Again, furious. What things to I have to take care when my son has a gaping hole in his chest and needs surgery?
So then the surgeon proceeds with all the complications that can come from removing a port. Like coils shooting up into his vein and into his heart, in which case they would need to go through his abdomen and remove it from his heart. Chris and I sat there, completely overwhelmed. Now it feels like the risks of this are outweighing the benefit. We later learned that Noah's skin opened up because of the steroids he is on. It makes the body unable to heal as well. If we had known this, we may have waited until this first month of pumping him full of steroids was over, then put the port in. It just feels so rushed. Why did they do it so soon? They told us they do it soon because they do not like to stick kids with iv's. And now, because of this they have to stick him with iv's every week for his chemo meds. They want to book another surgery in 5 weeks to implant another port. Chris and I feel very leery about this. This was so frightening. I can't even explain the feeling of absolute sickness that came over me when they took that bandage off and there was a hole in my sons chest with a metal button sitting right there in plain sight. It was awful. And now, our poor kid has had 2 surgeries in 2 weeks, and been put to sleep an additional two times for spinals and a bone marrow extraction. This is horrible. I hate this.
After the surgery, they let us go home. Which I was/am very nervous about. If I missed a hole in his chest before, how am I suppose to catch something else? He has permanent stitches that need to be removed in 10 days. I can take the bandages off tomorrow and look at the site. Not that I want to. This is so frightening. I feel like I am constantly checking him to feel if he is feverish. Constantly looking at his chest to see if its red or swollen. A fever will land him in the hospital for a few days and can be life threatening.
From that first day on July 4th, when we learned that it was leukemia, the doctors and nurses all told us, you are his parents, you know him best. But I feel like I don't. I feel like I have missed so many things. From the time that his lymph nodes started to blow up in November, to the time 2 weeks ago when he was pale I feel like I should have known. I feel like we are being rushed into decisions when I am not mentally stable enough to make them. I feel like the steroids are turning him into a monster. So if I missed something before when I 'knew' him, what am I missing now? Somebody please tell me this is a horrible dream, and wake me up.
Through all this Noah has been dealing quite well with the iv's and even the surgery. He likes being put to sleep and isn't afraid at all. He wakes up from his anesthetic very well and is actually quite funny. He had the nurses roaring with laughter last night. The other positive is that we found out that Noah is Low-Standard Risk for treatment. When I learn more about what that means I will let you all know. We know its better than High Risk. Some down side things are that the steroids make him unbearable. He screams and yells at us over anything. He cannot calm down very well either. It takes a long time to give him his meds because he hates them so much, and it ends up being a 20 minute fight each time, which can be 6 times a day. He is absolutely horrible to Holly. He wishes her dead even. And when we try to talk to him, he just screams at us and wont even let us speak. It is extremely taxing. And even though we know it is the steroids, it doesn't really make it any easier. Our child still has cancer. And that sucks no matter what.
Noah gets mad at the doctors, and calls them names (not to their face thank goodness) but its still hard to deal with. It seems we can't reason with him. He doesn't understand that its not the doctors fault that he has to go through all this. He doesn't get that they are the ones trying to help. I find it difficult to help Noah with that attitude, because in many ways I feel the same. I sat in the cancer clinic yesterday and felt myself start to fall apart a bit. I didn't want to be there. I did't want to see all those kids with cancer, and know that my own child is one of them. I found myself feeling angry at the people that were smiling and laughing. I hated the wall paper that was on the wall and the leaf printed chairs. I just didn't want to be there. I didn't want this to happen to us. So how am I suppose to tell my son to have a good attitude when I struggle as well. And I am not so naive to think that he cannot sense at least part of what I am feeling. This is so hard. Hard hard hard.
Even though I know that the Lord is carrying us through this, my faith has taken a blow. And perhaps that is the biggest struggle of all. I know that God did not give Noah cancer. I know that. But I just feel like He isn't hearing me. So many times these last couple weeks I have called out to Him, can't you hear me? I am not strong enough for this God. You picked the wrong people. I can't do this. Please pray for us. Because even though I feel hurt and alone by God, I know I am not. But it's hard. I always prayed for my children. I always said, never my children God. And now here we are. I just want to know that at the end of all this, that it won't be all for nothing. That I will still have my Noah. That we will pull through stronger than we were before. That perhaps our story will change someone's life. I just don't want my child to die to learn those things.
This has been a long hard 2 days. And so this post was filled with alot of emotion. I feel at a very low point right now, and its hard to see into the future at all. I have to go day by day.
Prayer Requests: Complete healing for Noah, that the cancer will be gone and never return. For my sanity. For our marriage, to remain strong and healthy. For Holly and Coltan, as this is hard for them too. That Noah will take his meds better. That doing chemo through his iv will be the best option.
And for all of you that have emailed, called, prayed and supported us through this, there are not words that can express how truly grateful we are. When I feel like God isn't hearing me, I know that He is, and that is because of all the prayer we have received. Thank you all so much. -Melissa