Last Updated on: March 10th, 2014
Baby Sam, my niece, has had a battle with cancer since the day she was born. Sam (Samantha) was diagnosed with retinoblastoma, a rare form of cancer. This means she has tumors in her eyes. Sam is my sister’s baby, and is the newest addition to our family.
In the city of Thunder Bay, Ontario, Canada, which is where we all live, there has only been one case of this type of cancer in the last 25+ years; her father’s. Sam inherited retinoblastoma from him.
Baby Sam was only two days old when my sister took her to Toronto, to the hospital for SickKids, where she ended up spending a large portion of her life during her first few months.
Sam has tumors in both of her eyes. The doctors at this hospital are specialists, and have seen Baby Sam many times since she was born. Sam has already undergone a lot of treatment. She has had three different types, so far.
When she was under one month old, she underwent cryotherapy and laser therapy. When she was old enough, she had chemotherapy. My sister refused radiation treatments for Baby Sam, as she did not want Sam to suffer developmentally. There are pros and cons to all types of treatments, and it is often difficult to make the right decisions. I think my sister has made all the right ones, though, as Sam’s battle with cancer is, for the moment, under control. However, the cancer can grow at any time. This is scary, since we do not know when it is happening.
Sam gets treated regularly. In fact, Sam has to go to SickKids every month for check-ups and treatment until she is 6 years old. At least. These frequent trips are really tough on my sister. They are hard on Sam’s big brother, too, who is now four. He has been to Toronto twice already, but usually stays with a family member when my sister travels with Sam. His dad works, so someone needs to babysit him! He likes to sleep over at Grandma’s house, and always brings his pillow and blanket set that are covered with Sesame Street characters, with Elmo being the largest one featured. He loves Elmo!
Sam’s treatments so far have consisted of three different kinds. Chemotherapy was hard on her, but was the most effective. Cryotherapy and laser therapy both have side effects, too, such as damage to the retina, which can lead to blind spots. Of course, having a few blind spots is better than losing both of her eyes! Sam’s dad only has one eye as a result of a late diagnosis of retinoblastoma. Basically, having retinoblastoma is a lose-lose situation. Our family cried for weeks when we found out Sam was afflicted with this disease.
We do not know how much vision Baby Sam has, since she is not old enough to tell us. She has one eye that is “good” and one that is “bad”, since most of the tumors in her “good” eye have been shrunk down to nothing. Her bad eye, however, has had way more treatment, and her vision in it has been affected. This we know already. Although Sam does not yet have language skills, she can still communicate. She laughs when she is happy and cries when she is not. When she was about four months old, my sister was advised to put a patch on Sam’s “good” eye to help strengthen the vision in her “bad” eye, and Sam had a fit. She hated the patch. We think that she cried so much because her vision was impaired, because she could not see. This is our theory. We won’t know to what extent Sam can see until she learns to talk. As of right now, she only says “Mum” or “MumMum”!
The good news is that we know that Sam can see a bit. We do not know how much vision she actually has, but Sam is able to recognize each member of our family, including everyone’s pets. She recognizes her toys, plays with them, and has a few favorites. Her attention is drawn to certain commercials on TV, images on the computer, and games her brother plays. She is an active, happy little girl whose face is usually filled with smiles. She is loved by all of us, and is adorable. Recently she learned to walk, indicating that she is developing at a rate comparable with “normal”, healthy children of the same age. She has also started to eat a bit of human food in addition to her baby food and bottles of formula. She is learning how to use her hands to transfer food to her mouth. In this respect she may be a bit behind in her development, but she is learning! My sister thinks she may be two months behind in her development due to being at the SickKids hospital for six weeks after she was born. Since each child develops at a different rate, it is hard to compare Sam to others her age due to the cancer she has. Sam is precious, and lovely, and a sight to behold. I refer to her as “gorgeous girl” and each time I do, I am rewarded with a wide smile!
Sam has had a few other health issues, too. She is going to Toronto again next week to get them all checked out. She has three appointments in one day: at 9:30 am, at 1:30 pm, and at 3:30 pm. My sister is very devoted to taking care of Baby Sam. I commend her for her devotion. It is not easy to travel and have to go to so many appointments within the space of just two days (they are scheduled to leave Tuesday and be back Wednesday night).
Baby Sam’s battle with cancer will be ongoing for the rest of her life. Having retinoblastoma affects her the most, but also affects the rest of the family. Her dad feels guilty for passing it on to her, and is dealing with these feelings. It affects my sister, as she is Sam’s mom and main constant, Sam’s lifeline. It affects the rest of us, too, in ways that are difficult to describe. However, we have learned in the past year that the best way to deal with it is day by day.
I could go on and on about this, but I am having my own health issues at the moment. My leg for some reason has been really sore this past week, and I am experiencing numbness in my right hand. I hope the two are not connected. I think the numbness is a result of too much time on the computer! I will be going to the doctor’s soon, I think, to get my hand checked out. I am worried. My pinkie finger has been numb for about four or five days, and now the numbness is moving to my ring finger. My whole hand feels weird.
My son, who is 23 today, has advised me to massage it, stretch it and then rest it. I would like to wish him a happy birthday and thank him for his advice. He is a private person, and does not want me talking about him, so I will stop. I just wanted to let him know, if he is reading this, that I think about him a lot. I just saw him two days ago, so I know he is well. It is hard to rest my hand when I am so addicted to my laptop! Resting it seems to be out of the question at the moment, although I am trying not to strain myself.
If anyone out there has experienced this type of numbness, I would like to know how to deal with it. Do you have any advice for me? I sure would appreciate it if you do. Just leave me a comment, please. Feel free to leave a comment about Baby Sam as well. I love comments!
If any of you have had experiences with the type of cancer Sam has, I would also like to hear from you, and maybe connect you with my sister. My sister is on Facebook, so connecting to her should not be too hard.
If anyone is reading this that has experienced numbness from using a computer mouse or from typing, I really want to hear from you. Don’t forget to comment!
Thanks for listening.