It was about 2 years ago when we went on a family vacation and thought we had a sick 2 year old. Little did we know that those were the first big indications of a growing brain tumor. It wasn’t until months later when lots of little pieces were put together and a very helpful doctor referred us to the right specialist.
Finally in September of 2013 we saw the whole picture…which was not a fun picture. I took her in for her first MRI to confirm another theory when I was told the doctor wanted to talk to me on the phone. He told he in one long breath..
- My two year old has a train tumor– substantial in size, rare in size, rare in type.
- The neurosurgeon is waiting for us.
- We need to go now.
- She will have surgery either today or tomorrow.
- Then later in the day we were told she would not be having surgery for a few days because he wanted to consult with Oncologists and other doctors because her case is so rare.
- Whenever the surgery would happen, the outlook is multiple surgeries with chemo 6 weeks after each surgery.
Once I swallowed that pill I was able to accept what I had no control over.
Haley just had her 8th MRI.
She really hates those because of the IV. I really hate them because I don’t like holding her awake and then feeling her fall asleep by the medicine, laying her on the bed, watching them attach everything to her and leave her there.
It never gets easier.
Each time it reminds me my child is sick. She isn’t technically sick because the tumor was removed but the side effects we are dealing with and overcoming with active learning are easier to explain when I say she is sick.
I am so grateful for all my friends and sister who brought me so many freezer meals when she had the surgery. I am grateful for all those who sent messages or gifts in one way or another. In the moment I was thankful for all of that but I am more so now because I can see more clearly.
I had tunnel vision, especially during those first few months. I have decided that is ok. I needed to have tunnel vision to get through that part. That was enough to handle. I didn’t want to nor could I have added more on top of that.
I’m lucky my friends/family understood that and are still around me today.
We just found out we are moving onto another part of this journey.
My now 4 year old is just days away from another surgery. According to the doctor the first brain surgery was a 10 and this will be a 1.
Still, it is brain surgery.
Even though she likes looking at pictures of her first surgery I don’t think she wants another. She remembers the first. She remembers her head hurt for a very very long time – and still does every week.
I don’t know yet how to tell her or if I will tell her before that morning.
I’m not sure how to tell my other kids without them becoming overly concerned.
What I do know is we will make it through one step at a time.