Last Updated on: March 10th, 2014
Baby Sam (Sammi)
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.
Lorraine.
Lorraine, I finally read this after meaning to for a while! My heart goes out to Sam and your family. This must be very stressful indeed.
We have an inherited retina disease in my family too. It’s called retinitis pigmentosa, and I inherited it from my father, who inherited it from his mother. He definitely feels guilty that I got it, so I understand where your brother-in-law is coming from. I don’t blame my father at all, of course, and am grateful that he didn’t let the RP stop him from having kids! So far it doesn’t appear that my son inherited it. He had a 50-50 chance.
My impairment isn’t too bad at this point but will continue to get worse. Dad is now almost completely blind. Vision is so precious. I’m glad Sam still has some vision, and she will learn to make the most of what she has. There is also a lot of research going on to help people with impaired retinas, including a “bionic retina” that the US FDA just approved. If she can keep the cancer in check, there is a lot of hope for restoring Sam’s lost vision when she’s older and the research has gotten further along. I make regular donations to the Foundation Fighting Blindness at http://www.Blindness.org, and you can read about the research there too.
And, of course, Sam has one thing that many kids don’t have, and that’s a loving and devoted family. You can overcome a lot when you have that! 😀
Thanks for sharing your story, Sue. I know it can be difficult to open up to others, especially on the internet! I encourage it! Everyone has a story… an untold story… and they all need to be told, otherwise, how can we find camaraderie???
It is amazing what kind of medical breakthroughs they are making, too! Fortunately, Sam has been lucky enough to have parents who are knowledgeable and have taken every step possible to “catch” it in time. Sam’s father was not as fortunate, and lost an eye as a result.
A big cheer for everyone who loves Baby Sam and supports her! Yay!
Lorraine and Janice, I can only imagine what this journey is like for you and especially Sam. My heart is with you. If I can assist in any way please let me know. I look forward to the pictures.
Welcome back, Pamela! If you look at my reply to the first comment, you will find all the links you need! Thanks for your support!
Hi, Sam’s mom here. I’d just like to say thanks to Lorraine for writing about Sam. I am all for raising awareness for all diseases, though RB and cancer are my main focus for the moment with Sam. Its tough to go through, but Sam is a trooper and you really get to see how lucky you are with “just” a cancer diagnosis after spending time at Sick kids. I appreciate the thought of anyone wanting to help out, but we are extremely lucky that all our travel, hotels, meds, etc., have been cost-free to us and covered.
Samantha and her Dad have signed up for the victory/survivor lap at the Relay for Life in Thunder Bay and I have joined a fundraising team with Relay for life in honor of Micheal Antcliffe who did his lap last year, and one for Sam since she was just fresh out of chemo and I wouldn’t bring her out to a crowd. He sadly lost his battle in August, but this year Sam is doing her lap for him and herself! So any donations to Relay For Life, or Ronald McDonald house are appreciated and will go a long way towards helping others in need. Thank you!
Pics of Sam can be found on my Facebook page and I make a few posts when she goes for treatment if you care to follow along with her.
Thanks 🙂
Janice
Thanks for clearing that up, Janice! I am sure that some people will be visiting your page to watch Baby Sam as she grows and fights this cancer. The link to your Facebook page was posted in an earlier comment, along with the link to the Relay For Life site where people can make donations and help fight this terrible disease. Thanks for stopping in! Sam IS a little trooper, indeed!
Victory for Sam!
Yes!
Lorraine, I’m still praying for you and baby Sam. I have an eye disease too and the sight in my left eye is very bad. I pray God will touch this child through medical science or miracleously. You might have nerve damage in your hand so definitely get to a doctor about that. As to your blog problems, time will take care of that. I’m like you, have little experience with blogs, but I’m learning.
Thanks for your prayers, Elaine! I know you are going through tough times, as well. I am grateful for your willingness to share and your comments on my blog. It is so nice when people take the time to comment and offer support! Learning takes time, and repetition, too. Have faith in yourself as well as God. You can do it if you try!
I went to the hospital, to the emergency room, under the advisement of a Telehealth nurse. The doctor ordered an ultrasound, which indicated that there is no blood clot to worry about, and instructed me to rest my hand, elevate my arm and stop spending so much time on the computer! (This may be impossible, I am so addicted to being online!) She did not say how long it would take to get better, and told me to use a pillow to rest my arm on, as this will help with the elevation. She suggested that I might elevate my computer, too. Thank you for your concern!
Is there something we (the readers) can do to be of help to Sam and her family? Donations for medical costs, etc? As far as your numbness, I would recommend a visit to the doctor. It’s probably something you don’t want to let go on without seeking medical help.
Wow, I did not expect an offer of donations… That is very kind of you. I will have to consult with my sister to see what her wishes would be… I would venture to say that she would have no objection to donations made to SickKids, or to Ronald McDonald House (they sometimes stay there, on extended trips) but I will have to ask. Can I get back to you on that? If anyone else would like to make a donation, please let me know, too. I know that one family my sister got to know at SickKids just lost their little girl, and because they are not from Canada, are stuck with a medical bill… so I will ask my sister what she would like to have happen… Thank you so much for your kindheartedness and goodwill! I am completely flabbergasted that you would want to help! I never expected such a comment… I will be talking to her today, so I will definitely let you know!
All four of my kids have not experienced any health problems worse than the flu. I can not imagine one of them being treated for something as awful as cancer. I am happy to make a donation, albeit very modest, if it will help this darling little girl in her struggle against this most heinous of foes.
I have spoken to JANICE WOODBECK, Sam’s mom and my little/younger sister, and learned that she has no problem with me publicizing her name (I did not know that when I wrote the post, otherwise I would have written it differently) and she says that any donation made to the Ronald McDonald House is appreciated BUT said that she is trying to help raise money for The Canadian Cancer Society RELAY FOR LIFE team that she is on, which can be found at this link RELAY FOR LIFE IN THUNDER BAY and displays a “donate” button. (I was unaware that she had signed up for this.)
Janice Woodbeck’s Facebook page shows pictures of Sam (Samantha, now age 1) and Ali (Alistair, now age 4) and can be accessed here. I have her permission to post pictures to my blog, so I will do that in a future blog post! For now, I will just include everything here…
THANK YOU SO MUCH FOR YOUR DONATION, on behalf of Baby Sam, and my sister, and from the bottom of my heart. You are wonderful, and definitely lucky to be blessed with a healthy family! Your blog sometimes makes me laugh, and to show you my support for you, and my appreciation, have included a link to it here so that others may also read some of the stuff you write/post! Thanks again! Your kindness is overwhelming!