Cancer Kids

Raylee is referred to as a "cancer kid." At the hospital when the staff conduct their education pieces on how to care for your child they say "cancer kids have a difficult time eating," "its common for cancer kids to have a feeding tube;" these are just some examples of how these patients are referred as. So we learned a lot about cancer kids and how to care for Raylee.

Remember when I said an entire medical team oversees Raylee's healthcare? Not only do we have the oncology and surgical team, but we have a nutrition team made up of 3 dietitians. At the hospital they watch Raylee's food and fluid intake as well as her weight to ensure her calorie and electrolyte intake remains healthy. Before we left the hospital, I sat down with one of the dietitians and she taught me what Raylee could eat. Basically, Raylee can eat whatever she wants or is willing to eat. Cancer kids have a difficult time keeping weight on, and eating and drinking, because they develop mouth sores that hurt and become even more painful when eating or drinking. So these kids simply won't eat or drink to avoid the pain. This is also the reason why a lot of cancer kids become dehydrated. Raylee started saying her mouth was hurting yesterday; hard to tell if she is developing one of these mouth sores, I couldn't see any in her mouth but it may be starting--that's the first thing that came to my mind anyway. These sores develop because the chemotherapy attacks any rapidly growing cells, not just cancer cells. Since mucus cells grow rapidly, sores are formed in the mouth, throat, and all the way down the digestive track. :( This is also why cancer patients lose their hair--cells in the hair follicles grow rapidly so the chemo attacks them. There is no way to direct the chemotherapy medicines to only attack the rapidly growing cancer cells. Mouth sores and loss of hair are only some of the side effects of having chemo.

Since cancer kids don't really eat (Raylee already ate like a bird before all of this started); their food is POWER PACKED. This means you add calories to their food by caking on butter on things like toast, or caking on the peanut butter, adding extra amounts of butter to Mac 'n Cheese, or adding sour cream or just fatty ingredients that we usually avoid as adults. Because they only take a few bites, you want as many calories in that bite as possible. We also use pedialyte and pediasure drinks. We were told if Raylee loses too much weight she will get a feeding tube put in her nose. The dietitian said kids her age usually pull out the feeding tubes (Raylee would definitely do this) and if that happened they would put one directly in her stomach. So far Raylee is eating just like she use to.....like a bird. She weighed 25 lbs before the trip to the ER and now she weighs 23.6 lbs. She lost a lot of this weight at the hospital. She is a really tiny thing--always has been. When asked what she wants to eat it is usually a Lunchable, a cheese burger from McDonalds, or a corn dog. (This morning she wanted a corn dog for breakfast :) ). Not the best diet for a kid, or one I approve of on a regular basis...but that's what she will eat so I'm letting her eat it.

When your child is diagnosed with cancer, oncology gives you a huge binder called "A Handbook For Families of Children With Cancer." It has 7 chapters, 242 pages of information explaining cancer, treatments, emergency care, physical changes and side effects, and much more to guide you. It is a heavy blue binder you carry with you throughout the hospital and you refer to it daily at home. Another "cancer mom" saw me holding the dreaded blue binder in the hospital and approached me. She said, "I recognize the blue binder. Is your child in oncology too?" Her baby was diagnosed with leukemia at age 5 months and he was now 1-years-old. They were our neighbors at the hospital...when her baby boy receives a treatment he stays in the hospital for an additional month because his immune system is so low. Bless his little heart, he was so cute and would wave to us when we walked by his hospital door through the window. Since Raylee is a cancer kid, I am now referred to as a cancer mom. There is also a support group in Utah for cancer moms. I haven't joined it yet, but will once we get a good handle on everything going on. One of the cancer moms gave Raylee a book called "Introducing Hairiet Hairison The One, The Only Me," which is about a little girl with cancer who loses her hair. This cancer mom wrote a note in the book to Raylee stating the book is to help her when her hair starts falling out and not to worry because it means the chemo is working. I don't know this cancer mom but I am very thankful for her kindness and willingness to reach out. Raylee's hair hasn't started to fall out yet. I check it everyday; hoping it won't...but like the other cancer mom said in the note--it means the chemo is working. Seems like a little sacrafice for Raylee to make to get well compared to the whole process of making her better. I always took pride in Raylee's hair because it grew in so well and is really long and thick for her age. Her Aunt Jody who lives in Japan, sent her a pink wig. I will post a picture of her wearing it when I can convince her to keep it on long enough to snap the picture :) She likes the pink hair...just doesn't want to wear it. It is super cute!

Cancer kids can also get really tired, are prone to infections, and can bleed a lot. This happens because their blood cells are attacked by the chemo. All blood cells are made in the bone marrow and then they travel throughout the body carrying oxygen or fight infections. Chemotherapy lowers blood cells because it damages any rapidly growing cells--and blood cells grow rapidly. Right now we are in the period after chemotherapy where Raylee's blood cells peak at their lowest. Raylee's home nurse comes twice a week to draw blood and then it is sent to the hospital to be evaluated. The same day the blood is drawn the hospital calls with her blood count. The last blood count showed Raylee's white blood cells have dropped dramatically....however, the hospital oncology staff on the phone told me they expect this to happen and it is common. Cancer kids can get really tired because the red blood cell count goes down, also known as anemia. Red blood cells carry oxygen throughout the body. If you do not have enough red blood cells you look pale, feel tired, get dizzy, and have shortness of breath. Cancer kids are prone to infections because their white blood count goes down. White blood cells are the infection fighting cells. The hospital has instructed us not to take Raylee to public places, expose her to other people--especially people who are ill, or give her any foods that are not prepared at the correct temperatures. They also told us to ensure she is in a clean enviroment where everyone washes their hands constantly. We take her temperature throughout the day as we have strict instructions if she has a temperature of 100 degrees to call the hospital, if it is 101 degrees then she needs to go to the ER. So far, the highest Raylee's temperature has reached is 99.8 degrees. These are not high temperatures in a healthy child, but in a cancer kid they are. Cancer kids can bleed easily and a lot because their platelet count is down. Platelets are the cells in the body that make blood clots. When the platelet count is down, bruising, bloody noses, and bleeding from the gums are common.

This is a really long entry....(sorry)....but these are just a few things we have learned and a few things cancer kids and their families go through. The cancer mom I met in the hospital said only 10% of monies donated for cancer research goes to childhood cancers while the remaining 90% goes to adult cancer research. I do not know how true this is, but if it is......that is really horrible. Childhood cancers are not preventable. I am not saying all adult cancers are preventable--because some aren't. According to the American Cancer Society, "The risk of developing most types of adult cancers can be reduced by changing in a person's lifestyle, for example, by quitting smoking, reducing sun exposure, and eating a healthier diet. These risks do not apply to children." Cancer is a horrible illness for anybody...and no one should get this, young or old....it just isn't fair. Since a lot of adult cancers are preventable please do all you can to avoid getting it.....it is an unforgiving and destuctive disease. I despise and hate it! I have several other family members fighting cancer right now, and a really good friend who fought breast cancer last year....and I know now, they are--along with Raylee--absolutely the toughest people I know!