Okay, besides our “children, families, food, air, and water….” here are some things that we have learned as Retinoblastoma parents and families that we just love. Naturally, we don’t get any perks for promoting any of the material things, but we do want to share some great resources that we found along the way! If there are any others, feel free to add them in the comment section and we’ll post it!
- Solo Bambini eye glasses –they are virtually indestructible, are cute looking, and come with a little sports band to keep them from falling off their little head
- Emla cream – some parents still carry this with them in their bags! It’s a topical anesthetic cream that you put on between 1-2 hours prior to a needle insertion (injection, chemotherapy, blood draws, etc). It doesn’t take away the pain, but it helps to dull the feeling of the needle at first poke.
- Plastic cling wrap — on those days when you just can’t find any Tegaderm (that sticky covering to put over Emla), the plastic cling wrap used to cover your leftovers from dinner, works as a nice replacement!
- Lollipops — during tube flushes, children often report a metallic taste in their mouths. So, some of us parents gave our kids something sweet to take away the taste. Lollipops were also really helpful just waking up from an exam under anesthesia (EUA) where the child should have some sugar but shouldn’t quite eat anything. HIGHLY RECOMMENDED are the “Safe-T pops” – the ones that are rounded at the ends and not a long (potential poke-in-the-eye) stick.
- A Daily Planner – a real one, and not just any old piece of paper you can find. With all the doctor’s appointments, tracking blood levels, figuring out when medication is being delivered and when you need to call and refill a prescription, visits to the ocularist, to the oncologist, to the retina specialist, when your visiting nurses come over – it’s a lot to remember. The best gift is the gift of organization during this time. You want to write down everything… and you want to know where to find it. That’s just the medical stuff! If you aren’t able to put your life on complete hold, you still need to get to your work meetings on time, pick up your other children from school or dance class, and bring the dog to the vet! Get a new daily planner!
- A friend you can call - Let’s face it – in times like this, you find out who your real friends are. And, for many of us, “real friends” were a few different things. They are the friends who don’t ask if you need anything, they just bring you the right thing. They don’t call you to tell you how upset they are because THEIR child has a little cold today (urgh… really? MY kid is throwing up from 2 days of poison purposefully injected into her 16 lb body!?!?). They rally others to help you. And, they are a listening ear when you just need to cry, when you don’t want to be comforted, and who allows you to say how awful you feel….
- A positive attitude — We’re not saying to love every moment of cancer. There’s no way that’s possible. But what we are saying is that a positive attitude helped us get through it. For many of us, because of the diagnosis, we all realize how precious life is and how easily it can be messed up. So, you’ll find a lot of cancer parents and families truly embracing a “hey, I’m gonna take each day for what it’s worth” attitude. If your child has a good prognosis, realize that others have not. And, each day that your child is with you is a gift that someone else didn’t get a chance to have.
- Faith – Faith means different things to different people on this site. For some, it meant a Faith in God. For some of us, our conversations with God were what kept us going. For others, our Faith was questioned through anger and a “how could this happen?” experience. For others, Faith meant “faith in the medical training and knowledge of our doctors”. Whatever Faith means to individuals, many agreed that it was something we couldn’t live without….
- A support system of other Rb parents — Rb is a rare cancer. It’s not the same as having breast cancer. It’s not the same as having diabetes. It’s not the same as losing an eye to an accident. Rb is unique. And, oftentimes, we have found that only Rb families understand each other in that both specific and general way. Find a good network of Rb parents. Most of them will be online, but try to connect with some in person. It’s good for your children. It’s good for you.
- Children’s books that have doctors in them — it was so helpful reading books about doctor’s appointments or even children with Rb. That way, we could point to what was happening to the character in the book to help ease our children. Some great books can be found through resource sites such as “My Fake Eye”. Many of us have “Joey’s Special Eye: A book for siblings of Rb kids” but it may not be in print anymore.
- The toy doctor’s kit — At the age of 2, Joli could pronounce all of the major tools the doctor was using as well as the different medicines she was taking. We role played A LOT to help her feel comfortable and more confident. We always practiced putting in drops (using saline solution) or checking blood pressure, taking temperatures, etc. I even found Joli taking the dog’s temperature with her toy thermometer one day! But, it was great because it helped her feel at ease!
- The little blue suction cup – Many of us still carry around the little blue suction cup that the ocularist gives you when you receive the prosthesis. I think I still have one in the glove compartment of my car! Some parents say they never used it while others swear by it!
- Good movies — Chemotherapy can be boring. And, for a small child who isn’t allowed to move, movies are usually the best answer! As a treat, Joli got to rent a new movie each time she went to the hospital (a 3-day stay)! It made going to the hospital sort of a treat because she didn’t get to watch movies at home!
- Hats – If your child needs chemo, he/she will likely lose hair. We went through treatment during winter in Boston, so cute little hats were a must! Thankfully, many kind people like to knit and donate adorable hats to cancer clinics, and we have great collection! Joli loved picking out her hats!
- A diary .. of some sort — While there are days you want to forget what’s going on, you may also want to look back on your time to remind you of your strength. Many of us kept diaries (ranging from 1-2 sentences to 1-2 pages a day!) and we’ve all found them beautiful to return to after treatment. On Joli’s “survivor day” – the day she had her surgery — we always revisit the diary and talk about how strong she has grown and how thankful we are that she’s alive!
