ScanAnxiety

You just squinted, can you see ok? You slept an extra 10 minutes and did not eat all your breakfast. Are you sure you are not nauseas? Today your limp looks worse. Are you sure your leg does not hurt? I have noticed that your limp has been getting worse for the past few weeks. Your occupational therapist even noticed it. I knew I was not crazy. These questions have been apart of our daily conversations for the last few weeks. You would think in this situation I would want to be wrong. Why would I ever want to be right when it comes to my biggest fear? Maybe I think if I caught the tumor growth before the MRI does, it will somehow cushion the blow. The supermom can never be wrong and always has to know her child best…right?

AJ always has the same response to my “annoying” questions. “Mom, my leg gets a little better each day”. He has been saying that for the past 3 months, but to me his limp has gotten dramatically worse in the last 3 weeks. Maybe he is just so used to the pain that it doesn’t faze him anymore. Maybe he knows what will happen if he admits to the pain.

AJ’s scan was scheduled for last Tuesday 1/27/15, the day of the blizzard. His scan was rescheduled for Saturday. I stopped being nervous and was just over the whole thing. On the way to the hospital, I asked if he was nervous and if he has any questions. He said, “Seriously Mom, this is like my millionth scan. Plus I realized I love the way I feel as they give me medicine to put me sleep. My body feels just so great”. I burst out laughing and think oh jeeze, I am going to have to have a tight rope on him during his teenage years. We get to the hospital and we have a little bit of a wait time. Finally they call him, I ran back to the waiting room to grab something and when I came back he was already in the MRI room. He was chatting up a storm with the familiar nurses and staff. Then bam I saw them get ready for his IV. I totally forgot to tell him that he needed to get an IV because he no longer has his port. As I am peeking through the door, I see him hand over his arm with ease. I think to myself about how much he has grown since this whole ordeal started. He is now a year older and mature way beyond his years.

Now it is just wait time, 2 ½ hour scans are always the worst.

Finally he is done and is waking up from the anesthesia. We see a family with a girl who looks around AJ’s age in her mother’s arms. The grandma has tears in her eyes. After the little girl went in for the MRI, the grandma looked at me and said, “Oh wow, he is so well behaved and calm”. I responded by saying “he is an old pro at this”. She then asked what he has? The second I say he has a brain tumor; she starts to cry even more and asks if he went through chemo? I start to tell her a brief overview of what he has been through and how resilient and strong all these children become. She then tells me, they just found out her granddaughter has a brain tumor too. I assure her that she is at the right place and soon all the testing; pricks, surgeries and hospital stays will become a little easier. This was just another reminder, that every day children get diagnosed with cancer. No child is protected from this awful villain; it doesn’t care what its victims look like, their age, financial status or anything for that matter. This situation put my scanaxiety back onto the table.

Monday came rolling around and I did not hear anything from the hospital. I knew no urgent issue was seen on his scans but that did not mean they did not see any tumor growth or other unwanted results. I decide to call and was told his doctor will have to call me back. Ugh, I wanted to demand to talk to someone right away, but I knew that would be totally be crazy of me. It is late Monday morning, I know Mondays are always crazy and his doctor probably has back to back appointments. I am sure he didn’t even look at the MRI report yet. Finally I get a call! Its AJ’s PA, she doesn’t sound too thrilled on the phone. She explains that his scans are tricky to read. Good news is that there is no growth on his spine and no new tumor growth on the main tumor location. There are some questionable areas that the scan revealed and that tonight (Tuesday 2/3) they will go over his scans with the tumor board. Although I am happy that there is no tumor growth onto his spine, anything other than perfectly clean scans is something I never want to hear. I know from previous scans that sometimes MRIs can show questionable spots that end up causing a big scare for no reason. I am hoping that this is the case, but the true strength of this villain is always in the back of my head.

To AJ, today he is ok and that is all that matters. He does not think of his future, he lives in the moment. Maybe that’s why he is always so happy and so full of life. He always has enough energy to light up the whole world. Sometime tomorrow, I will get the call that will determine our next steps. I am blessed that I have a child that thinks a lot like me. He helps me remember how I used to always look at life and how we should continue to live it!

January Highlights 

**AJ got glasses! At first he was not such a big fan, but with a little encouragement from his friends, he know loves them.**

**During the blizzard, I decided to get a hotel for the night. Since he spent his whole summer in the hospital he always tells me he has to make up his “swim time”. So I surprised him with a night at a hotel that of course had a indoor pool.**

**He is doing great at basketball and great in swim class. He also started soccer. I was shocked how well he kept up during soccer practice, especially since running is very difficult for him. He still says basketball is his favorite sport, but enjoyed his 1st soccer practice.**

**Home School is coming along great and he now gets 2 hours of tutoring a day. This extra hour has done wonders for him.**

3 comments

  1. We are all happy to see his progress every day and hope that the scans only show good things.
    His playing with me is the greatest. He love to play WWE Wrestling where he is “Aaron The Great” and I get to be his sidekick.
    Playing Superheros is pretty great too. “Spiderman” always gets the bad guys.

  2. AJ IS ALWAYS IN OUR THOUGHTS AND PRAYERS. WE PRAY FOR A SPEEDY RECOVERY. HE IS QUITE A WISE AND DARLING LITTLE MAN.
    WITH ALL OUR LOVE,
    COUSINS SUE AND MEL RAYMAN.

  3. Hi , AJ is such a strong boy! Every time i read his blog i feel like there is hope out there . I have an aunt who has been fighting this villan for 20 yrs and is now in hospice. My husband s 4 year old cousin has terminal cancer and my friend aunt just died from cancer last week and her mother has stage 4 cancer all over her body. This villan does not discriminate against age race or sex . But i thank God that atleast 1 out of the many people i know with this horrible disease is looking at it the way your son does. It just gives me hope n strength. Thank you please continue to keep us updated on his status. I hope everything turns out ok with his MRI! God bless you AJ

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