It’s been almost 5 weeks post eye removal and life is just…. going on….. Some days I forget that it even happened and he is just a happy wild little 2 year old. Then other days it’s like the whole world is on my shoulders and I can’t help but feel so sorry for my little guy. Cancer has took so much from him and I can’t help but fear that it has took his innocence too. If someone gets near his eye, he already winces from pain or fear not entirely sure. That he knows he has to have his glasses on to protect his eyes now. How it took our family vacation away from us because we couldn’t take the chance of sand getting in his eye from the beach or water from the pool. How in public he knows when people stare because he puts his stroller hood up to cover himself. Not to mention the physical aspect of actually taking his eye…….
This whole event or occurrence or whatever you want to call a fight with cancer has truly affected us all. I had never seen my husband cry, I mean truly cry, before this. My Poppie is too afraid to play with him out of fear of hurting him. How his older brother is being so great with him and tells me if his eye is “dropping” (watering). We are spoiling him so much and getting him whatever he wants. We are all just wanting to put him in a bubble. And for me, I feel like this has given me anxiety. I have always thought I had nerves of steel and had thick skin. Nothing has truly crippled me from fear. That is until you find out your child has cancer……
Last week was hard. It was our beach vacation we had planned for over 6 months. It was the whole family on my husbands side and everyone was flying in. Cancer took that away from us. We sent my husband and Mason on to the beach while Cooper and I stayed here. Getting all these great photos of Mason playing at the beach with his cousins. I hate cancer so bad for keeping us home but even more for missing out on all our family. We tried to keep it fun for him. We ended up with a trip to the aquarium and to the zoo. It took so much from him, I didn’t want it to take his vacation away too. Then after that one evening Cooper popped one of his stitches in his eye. Cue another freak out from momma…. You can see how it’s pulling on that last stitch so much worse. You can actually see the plastic conformer piece that is holding the shape of his eye for the prosthetic. I keep telling myself only a few more weeks till the stitches come out. Only a few more weeks of holding him down to put the medicine in his eye. I am yearning for some normalcy in our life. Some care free days….
Next week we head back to St Judes for the next appointment to remove his stitches. They will also do another EUA (examination under anesthesia) to inspect everything and look at his good eye to make sure the cancer isn’t in there. They are going to treat him as if it is hereditary retinoblastoma until we hear otherwise from genetics. It has a chance of returning if it’s hereditary so we are hoping and praying that it is not. As of right now, he’s cancer free. While we are down there we have a 9-5 appointment with the prosthetic center. Yes. An all day appointment. They have already told us to prepare for a horrible day. After that is in he can go back to normal activities for a 2.5 year old. No more water restrictions. I’m not even sure how able I am going to be to get the prosthetic in and out… It has definitely not been all sunshine and rainbows…
Even as bad as we have/had it, I can’t help but to think how lucky we are. How lucky that the cancer didn’t spread out of his eye and how he didn’t need to undergo chemo or radiation. Walking the halls at St Judes really put things into perspective. As bad as childhood cancer is….as bad as having your youngest son lose his eye…. as scary it is on a daily basis that you are afraid it will somehow come back…. we. are. lucky. Please pray, please please pray that our next check up is good. That the cancer isn’t hereditary and is good eye is still good. I’m soo soo afraid that we are going to get bad news. The fear is crippling some days and I have to stay strong for my family. And as a very close friend said ….. Fear. Is. A. Liar. Please continue to pray for us. We still need all the prayers we can get.
Original story HERE.
2.5 weeks post enucleation HERE.
Graphic photo below…………