Where did the time go?

beach pics

Lunch date with my favorite guy ❤ Perks of Home Schoolbeach pics 2

Happy New Year everyone! I cannot believe that its almost the end of January. We had a great holiday season and I made sure I soaked up every little smile my little superhero gave us. He was so happy to be home with family. I rarely think of AJ’s distant future, but this holiday season my mind kept jumping ahead. What if this is the last Hanukah and Christmas? What if this is the last Christmas he is able to put ornaments on the tree or sprinkle reindeer food on the front lawn? I hate when those thoughts enter my mind, I always try hard to snap them out. This time I let them stay, it was a constant reminder that we have to cherish every moment we have with him.

As I look back on the past year, I realize this time last year is when AJ first started to show signs of the tumor. After Christmas break his teacher’s started to let me know he was having problems focusing and his personality shifted a bit. Of course at the time I just chalked it up to him getting back into the routine of school after the long break. I still find myself in disbelief that it has been almost a year that we have been at war with this evil villain.

My little superhero has come such a long way and I couldn’t be prouder. Our days are filled up with lots of appointments, school tutors and therapy. For the most part he is recovering great and his old personality is back! When AJ was first diagnosed we believed that he was having absence seizures. Those did stop for a while but they have returned. Some of his blood work showed that the amount of anti-seizure medicine in his body was low. Since then we upped his dose and now just crossing our fingers that does the trick. As far as him returning to school, his counts are still not high enough. I am crossing my fingers that March will be his lucky month!

I think I am finally accepting that some things are now his “new norm”. For example, his right side weakness has improved dramatically but he still has a noticeable gait when walking. At one of our appointments we found out this his neuropathy is worse than we expected. This explains why he has difficult time walking and running. This also affects his schoolwork; due to the neuropathy in his hands he has a hard time gripping things. This makes writing difficult for him; he tends to grip the pencil extra tight which leads to pain and tiredness in his hands. If you see AJ, you might not believe this because he still manages to  flip his way around and is always dribbling a basketball.

In the beginning of January we also got his results from his neurospych report. This report shows in detail what part of his brain was affected by the surgeries, tumor and chemo. It went into detail about his current cognitive level and also what we should expect to see, as he gets older. It would be naive of myself to believe that he would walk away from this journey and not see any change in the function of his brain. His main tumor location was in a very sensitive area and in a very important part of the brain. This is why radiation was never a good option and why after every surgery we did not know the state he would wake up in. AJ has always been very bright child and always grasps onto new concepts very fast. This quality in him is giving him a big advantage. After the 1st surgery I noticed he was not as quick to pick up new concepts as he used to. In the past two months we have noticed that his memory and processing speed have also slowed down. Sometimes I think I am talking to Dori from Finding Nemo. Some of that is probably chemo brain but there is also more to it. The neurospych report stated that the issues we are seeing are a result of the tumor and surgeries.

AJ already has permanent of hearing loss from the chemo and now he will have to learn to overcome these new obstacles. I know at times he gets frustrated because he is used to everything coming so easily to him.

As I was reading the neuropsych report, my heart sank once again. One portion of the report stated; “The pattern of strengths and weaknesses is consistent with the difficulties typically seen in children who have undergone treatment for choroid plexus carcinoma. Specifically, cognitive deficits are generally thought to result from both tumor presence as well as surgery”. “Given the disruptions in frontal subcortical circuits associated with Aaron’s tumor and treatment, including surgery and chemotherapy, it is likely that his acquisition of such skills will remain behind that of a typically developing peers with respect to timing and level of mastery”.

It is hard to explain to someone why all of a sudden just because something is on paper that it stings more. From the second Aj was diagnosed with brain cancer, I knew what would happen to him. I knew that even the best-case scenario would leave him with numerous deficits in both physical and cognitive development. I know from talking to a million other cancer moms’ that this is just the beginning. Many children do overcome these difficulties and go on to be extremely successful in life, but it doesn’t make it the journey any easier. Just another thing our children will always have to fight through. If anyone knows how I roll, I will not let this define him in anyway way. I will not lower my expectations for him or label him. I am a pro about being a cancer mom and I will learn how to be a pro for advocating for him at this level. As of now, AJ is doing great in “school”. He scored great on all the evaluations and is not too far behind in his schoolwork. Everyone is impressed on how much he knows, especially since he has not attended school in over 10 months. I am sure once he is allowed back to school, he will fall into place and excel like he always does.

The last two months have been super busy. We have been so busy that I actually forgot that our little superhero’s birthday is right around the corner. For those who do not know, AJ is a Valentines Day baby. That is probably the reason why he is such a big flirt. Every year by this time his birthday would have been perfectly planned out!  Invitations made, placed booked and etc. This year I am lucky, I even realized that it was January. I called around a few places but most places were already all booked. Luckily I found a place that had one open spot left! So let the planning begin.

AJ has his first post transplant scans at the end of this month (1/28). Scanaxiety has not hit me yet, but I am sure it will soon be upon me! I will be sure to update everyone once we get the results from the scans.

Thank you again for everyone’s prayers and support!

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