Just a heads up…I have been writing this randomly over the past few days so I apologize for the sudden change of thoughts and up and downs!!
Usually when you are in the last trimester of pregnancy, you start cleaning, making plans, cooking extra meals, organizing, getting things done, coming up with new great ideas….this is what I am doing, except the small fact that I am not in my last trimester, or even pregnant for that matter, but what we are doing is coming up on the 1 year post treatment scans for Jack. I decided the other day that I cannot just do my normal daily activities becasue I am going totally crazy with so many thoughts running through my head. I have started cleaning up more than usual and trying to get things organized better. I am planning activities for us to do that we would never usually do. I am planning a vacation so we can celebrate the clear scans that Jack will have. I am getting things done that I probably should have gotten done a long time ago. I decided that I am totally nesting and it’s really odd.
I figure if we have plans, then we have to do them and nothing will change that. I am a person that does not like change so if I set things in stone, they won’t be changed. I am extremely nervous about Jack’s scans this time. I believe in my heart that he will be fine and that we will be getting that phone call from Dr Eshun that we wait on pins and needles for when he says, “I have good news for you!” which is followed by, “What were you worried about?! It’s Jack!” and then a small laugh because he knows I am the Queen of Worry especially when it comes to my kids.
We knew when Jack was diagnosed that it would not be an uphill battle, but a total roller coaster. One that makes you sick every now and then from your stomach falling to the floor and one that makes you scream with joy when you learn you made it through the dips and turns. This ride is one that I really want to get off of but I don’t see that happening anytime soon. I know some people think that since it has been a year from the end of Jack’s treatment that it should be getting easier and I should just realize he is a “normal” kid now, but that’s not how it works. I decided not to research as much about Neuroblastoma when jack was going through treatment because when I did, I wanted to grab my kids and my family and go away to another land where this didn’t exist. Now that Jack went though the treatment and I read more and more about this awful Monster, I feel better that I know more and feel educated on it but it also freaks you out when it comes to scan time.
I had someone say to me after asking how Jack was doing and I said that he was doing really well, they said, “Well, you don’t have anything to worry about anymore, right? He did his treatment and he’s fine now so that’s good.” I kindly reminded them that unfortunately it isn’t that easy with Neuroblastoma or any cancer really. You can move on with your life and move forward, but it’s not over. You do have to worry about relapse and late side effects from the chemo and radiation. You do have to worry about pains and problems that you encounter for years after treatment. You do have to worry about having their immune system totally and completely wiped out and to have to basically start over with all colds and flues and how easy they can become something else. I am not being a Debbie Downer or a total pessimist at all, in fact, I am being a realist. I don’t believe it until I see it. I don’t trust it until it’s proven.
I spoke with another Neurblastoma mom today and we both openly admit that our brains will never be the same after watching your child go through cancer. There is not a “to do” that can be remembered, it all has to be written down. Then we lose the list that we made and have to make a new one and forget half of what was on the list to begin with. We think everything that is wrong, MUST be cancer. I had a spot on my back that looked a little red…I made phone calls to friends to find the nearest dermatologist and off I went. I thought for sure I had skin cancer. He looked at my back and said, “Put a little lotion on it. It is a small dry spot.” Oh. Ok. I knew that. It makes you feel totally and completely crazy.
I have totally rambled on about all of the things that I am thinking now and should probably start to finish this post up and will do that with updates on the boys. Braden is doing great…talking more and more each day and just growing into a little man and leaving his baby stage behind. Last Friday I woke up to him chatting in his bed and he was yelling, “Party, Party, Party!” I know that we will have our work cut our for us when he is older! Jack is doing well and feeling great. He gave us another little nervous scare last week because he was complaining about his neck bothering him. Of course it was in the same spot that he had his biopsy from so it made us pretty anxious. I talked with Dr Eshun and Sharon on Monday and they didn’t agree to getting a CT done sooner than scheduled. They said that if it wasn’t swollen, then not to worry…so we stuck with that and he seems to be just fine. No complaints. We found out today that he got in to the school that we wanted him to get in to so he stars Kindergarten in July and we are so excited!!! 9 days until his birthday and 14 days until Jack’s MIBG scan…I would tell you the minutes and seconds that we have left as well but that would be all to much, right?!
Thank you for your continued support and please send out your positive thoughts and prayers for our boy!!!!