Chemo Round 2

We admitted Raylee to the hospital today at 10:00 am for her second round of Chemotherapy. Her treatments for neuroblastoma will all be inpatient treatments. It is now almost 5:00 pm and she still has not received her Chemo....what a long day...and still a longer night to come. There is a lot of prep work that happens before they actually inject her with Chemo. I never knew it was such a process and science. I am not sure if all Chemotherapy treatments are like this. All day Raylee has been injected with a lot of different fluids to prepare her body for the Chemo and to fill her bladder. She has to have a great amount of urine output during Chemo; basically that is what we are currently waiting for...her urine output to be a large quantity. This is because one of the Chemo medicines she is given can damage the bladder and they do not want the medicine sitting in her bladder. They will also give her another medicine before the Chemo medicine to coat the bladder for protection. During this round of Chemo Raylee will receive 3 different Chemo drugs. They will inject them back to back and it will take over 2 hours.

Today the Child Life Specialist 'Mike' whom all the kids here adore and all the doctors and nurses speak highly of, came and played with Raylee. His play is play therapy. He is going to help Raylee to be able to take medicines orally again. He said children don't have another avenue to express how they feel and release stress like we do with things like journaling, running, etc. He said kids express everything through play. He said there are some cancer patients who get sick on their drive to the hospital because they have it in their minds they are going to get sick before the Chemo actually makes them sick. He also said it is really difficult to explain to a child, especially one as young as Raylee, that the medicines that are making her sick will also make her feel better too. With his help we hope to change Raylee's mind that medicines will not make her throw up. When she sees the oral medicine syringe she gags as if she is going to vomit...just a mental phenomena she has created in her mind.

I am so happy and grateful to live in a day with modern medicine. Mike said in the 1930's and 1940's children receiving Chemo were isolated and only the mother could see the child for 1 hour a day. I can't imagine Raylee being alone through this; that would be terrifying! During that time a brilliant doctor conducted research and proved having parents involved with their children's treatment actually increases the child's success at winning the fight against cancer. This seems like common sense to me---with all things, not just fighting cancer. When children have a great and active support system they will be successful in all things whether it is school, church involvement, sports, or overcoming an illness.

Raylee is napping right now....I am just waiting, waiting, waiting, it is actually really boring and exhausting to just be here. So happy my friends brought me some magazines!! Thank you guys :) Raylee had such a fun weekend and she was full of happiness and energy. We recently celebrated her 3rd birthday! After such a wonderful weekend it was really hard to bring her to the hospital, knowing what is to come :( The drive to the hospital felt like we driving in slow motion even though we arrived quicker than we wanted. Here's to a long night...and to a brave little new 3-year-old who is kicking some cancer butt!

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Raylee had a difficult evening; seemed she had an anxiety attack--who could blame her though? She has gone through so much lately. She cried and cried for over an hour and nothing was going to comfort her. I felt bad....helpless....and desperate for anything to make her comfortable. It was around 8:00 pm and Jerry came to relieve me for the night since it was his turn to stay overnight with Raylee. What a great husband! I left around 9:30 pm and they were getting Raylee's Chemo ready for injection--finally! Its disheartening when you are in and out of the hospital 4 times in a month and you notice things there have changed. For instance, all visitors are now required to check-in at the security desk and have photo ID and wear a visitors sticker, when room service brings Raylee food there is a "prepared by......" card on the tray, well now it is printed in color with a picture of a turtle, also some of the tile in the floor has changed.

Hair Be Gone!

The picture posted above says it all! The hair is gone. Last Tuesday night it started falling out effortlessly....and each day more and more fell out. It was really heart breaking to watch. Thursday Raylee was with grandma Patty and she had a little pony tail on top and the darn thing fell out in grandma's hands! Crazy thing is when Raylee started Chemo grandma had a dream that was going to happen--sure enough it did! By late Thursday afternoon, Raylee had lost almost all her hair. Jerry took a Barbie doll and together they shaved the doll's head and he asked her if the Barbie was still pretty and she said 'yes.' He told her she would still be pretty too. She was scared of the clippers but he showed her it wouldn't hurt and he shaved his head. She still didn't want a hair cut.

Later he asked her if she was ready and she said 'okay.' So he hurried and shaved her head since she finally agreed. I wasn't home at this time and felt bad because I really wanted to be part if this.....but it worked out...I probably would've made it harder for her in some way. She is and always has been a daddy's girl. I am glad Jerry was able to share this moment with Raylee. After her head was shaved she was so happy--the picture posted above shows the biggest smile--completely priceless as it is, it is super super adorable! After her hair was shaved she seemed to have a new burst of energy and has been happy ever since. She calls it her 'baby hair cut' and is enjoying her daddy, sister, grandma, and grandpa rubbing her head and telling her how cute she is. We are going to have so much fun with hats, scarfs, and head bands!

Raylee now fits in well with her dad and grandpa :) Her cousin in Ferron came to visit and we shaved his head also. We were told several young men at church shaved their heads too. In Tooele county Raylee has a cousin whose All-star Baseball team all shaved their heads for Raylee. Thank you guys- you are all amazing!

What an Experience!

This weekend has been a growing and humbling experience and it is difficult to express how I am feeling right now. Raylee's aunt Valerie, aunt Alysia, and grandma Patty planned a Yard/Bake sale in behalf of Raylee...it was more like a SUPER Yard/Bake sale! I am not sure how long it took to plan this or how many people were involved....but I do know there were a lot of you and hundreds of people came out. There were so many people and the word was spread through Facebook. Since Jerry and I don't Facebook we had no idea how big this was. Maybe it was done this way on purpose--to prevent us from stopping it ;) Jerry and I are a lot alike...we have a difficult time when others fuss over us, or when we are recognized for something--the attention is uncomfortable. We are really private people and with the Yard/Bake sale we swallowed our pride and were deeply humbled. There are many people who donated items to be sold, I am aware of many of your names but not everyone's. I want to post your names in this blog to praise and recognize you, but I am not sure you'd be okay with that. The sale did exceptionually well and definatly lifts the financial burden of medicial bills that are on there way, and ones that will be coming in the future. Please know this...we love you all so much and pray your blessing will be abundant to the point you can't comprehend--because that is how we are feeling....we can't comprehend all the love, prayers, and thoughts coming our way or that a lot of people have donated their own money to Raylee's medical expenses. These are sacrafices people have made for my family....and in no way do we feel like we are good enough people to deserve all of this compassion and kindness. It has been hard to wrap my hands around what we are going through, but also that so many people care about my little ordinary family. I don't know how we can ever repay you, or thank you enough for everything done on our behalf. I prayed to Heavenly Father to help us through this and He gave us YOU--family, friends-old and new, neighbors, ward family, coworkers, our neighborhood, cancer patients and survivors who reach out, our Blog followers, complete strangers, and Jorja's "secret summer friend" who left a gift at the door for her. We are blessed to have rubbed shoulders with all of you...thank you for being our motivator, advocate, comforter, supporter....and letting us cry on your shoulder at times--the support is incredible!

Our world has changed dramatically in just the last month and everyday I wake up, I feel like a different person. My outlook has changed, my perspective has changed, my goals have changed. Things that seemed to matter before, don't matter anymore....and things that didn't matter enough, matter more. This experience opens your eyes to a whole new life, a whole new way of thinking, and a whole new way of living!

Gourgeous Girl With or Without Hair!

Last night I was combing Raylee's hair getting her ready for bed and it started coming out in my hands. I just stared at it and showed Jerry; we both frowned. It broke my heart to see it and I had to step away and go in another room and cry. I didn't want Raylee to see me crying....she really is going to lose her hair :( There is nothing anyone can do to stop it. Today she lost even more hair and we have a big ball of it. At the hospital they told us one day I would be combing it and it would come out, or she would wake up one morning with a lot of hair on her pillow. Everyday I checked for hair loss and there wasn't any; I was very hopeful it wouldn't happen. When I washed her hair tonight chunks of it fell out. We told her the medicine helping her feel better is causing her hair to come out because it is doing a super good job at killing the cancer in her tummy, and she screamed 'no' and cried. I told her we can cut her hair and she cried even more. If Raylee were a boy we would just shave it....but it isn't that easy. She loves her hair....we love her hair....its adorable! As girls we identify ourselves through hair even at Raylee's young age she is attached to it. We will go ahead and have it cut short...probably this weekend. I feel so bad for her. But when it comes down to it she will still be Raylee, my little girl, as adorable as ever. It will be my job to ensure she feels cute and adorable, smart and pretty, and down right a gorgeous incredible girl with or without hair!!

ER Trip

Will we ever have a weekend that doesn't involve the hospital?

Saturday evening Jorja and Raylee were eating cookies and milk. Raylee spilled her milk down the front of her. I didn't want the bandage for the central line to get wet so I took Raylee's shirt off. As I pulled her shirt over her head I heard a snap and knew the tube from the central line had snapped. I forgot we pinned it to the back of her left sleeve. The home nurse put some medical tape around the tube so we could pin it up and over Raylee's left shoulder so it was out of sight and out of mind--this was an attempt to prevent her from playing with it--it was working. We started pinning it just last Monday. I can't believe I forgot it was pinned. We have an emergency 'Central Line Go Bag' for situations like this. It comes with gauze, saline, Heparine, other items, and most importantly a small alligator clamp. I hurried and clamped the tube just like a RN showed me and then took the guaze, wrapped it around the end of the tube were it had snapped and clamped it again with another alligator clamp. I did not panic! I was super calm; the only thing I said in worry was 'Oh shit!' I am so proud of myself because I handled the situation just fine...especially since I was alone with Jorja and Raylee. Jerry had gone hiking with Travis....he needed a break...he deserved a break. The central line, also known as a Broviac, is another constant worry. They can get infected, pulled out, or broken, rather very easily.

Once in the hospital Raylee had to wear a face mask...she was not happy about that but it is a great way to protect her from germs. The staff at the emergency room front desk put us in a triage room immediately so Raylee wasn't exposed to the public in the waiting room. There they took her temperature and since she did not have a fever the RTU team came and got us. The RTU team is a unit by the ER that is a response team which assists in situations that are not life threatening and the person is not ill. Of course once we were with RTU they took Raylee's temperature again and said she had a fever....this was only 10 minutes after triage took her temperature. Not sure why her temperature was different maybe because Raylee was more upset at this time. They kindly moved us back to ER. :( The nurses in the ER and the attending MD saw Raylee immediately. They again took her temperature and it was normal; no fever. This again was maybe 10 minutes after RTU took her temperature. Since there was a documented fever of 100.4 degrees they treated Raylee with some heavy duty antibiotics and drew some blood to check her counts. This meant she had to have an IV in her hand because the central line was inaccessible. Once the antibiotic was completed the IV team came in and repaired the line by splicing a new tube within it. This is the 2nd time the tube has snapped and repaired. It keeps getting shorter and shorter. The hospital staff keep reminding us this happens all the time especially with children Raylee's age. Doesn't exactly make me feel any better because it was my fault my child just got an IV in the hand with a huge needle. We were at the ER for 4 hours. This made for a very long, very exhausting Sunday. Today we monitored Raylee's temperature closely and so far so good. I am not sure I will get use to the numbness you get at hospitals....its like a dreamlike tunnel vision state. This feeling came back yesterday as I lost track of the day and time again. Good thing is....we didn't have to stay the night and Raylee is having a good day today.

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!

New Vocabulary and a Better Day

It is difficult trying to get a routine back in our day. Each day has been different and unpredictable. Jorja is on summer vacation and there is no school schedule to base things around. One thing is for sure, we have a constant new lingo or vocabulary we use in our home. Here are some of our new words: Neuroblastoma, neuroblast, Heparin, 10 units, hematocrit, CBC, hemoglobin, neulasta, absolute neutrophil count (ANC), platelets, oncology, carboplatin, etoposide, cyclophosphamide, doxorubicin, cancer kid, and mid-line.

So far, putting the meds in Raylee's juice is working. You have to coax her to drink it all, but I would rather have this struggle then the fight she puts up to take meds. Now when Raylee is asked if she needs medicine or is hurting, (she always says no because she knows if she says yes she has medicine) she has the idea she gets to choose. Not sure if this is the best approach.

We definately had a better day today compared to Monday....thanks for all the positive thoughts and energy, prayers and love from ya' all--we sure love you!

Headstrong Little Princess

I haven't been able to post anything for a few days; I got really sick this last weekend and yesterday was a day I hope I forget. One thing about Raylee being so young and having cancer is she probably won't remember most of this and probably too young to get super depressed about it. We came home from the hospital last Friday. The feeling to leave the hospital is one of relief, however, with Raylee's situation we knew caring for her at home would be harder than if we were at the hospital. There she receives fluids constantly with most her medications going through the IV line. At home, we need to convince her to eat and drink, and to take all her medications orally--try getting a head strong child who is almost 3-years-old to take lots of meds twice to 4 times a day--she refuses and has to be held down to take them. This makes her upset and it doesn't feel right to hold her down....but she needs them to help make her feel better and to help fight off infections. Anyway the ride home was difficult and we learned a huge lesson...always take the puke bucket with us in the car, put towels under her carseat to protect the seat, travel with extra towels and baby wipes. I don't think I have to describe what happened. Driving home was the beginning of a very long and unpredictable weekend.

Once home we tried our best to organize and manage many different anti-nausea meds, several different antibiotics, and several other meds with a time schedule. In reading the side effects to the meds all of them can cause nausea, vomiting, and loss of appetite. This doesn't make sense because even the anti-nausea meds have this side effect, yet we take them to help manage nausea, vomiting, and loss of appetite--I just don't get it ;) . All I can say is Raylee has become an expert puker! She now associates throwing up with taking medicine. She started saying "it will make me throw up" when we give her meds. Then sure enough....she gaged them down until she threw up. I have a weak stomach...so being part of this makes my stomach turn. A weakness I've always had but need to get over fast! .............but I didn't get over it fast enough. Friday evening to Sunday morning I was really sick. I made sure Raylee and I were never in the same room. It could have been my weak stomach, or, just built up fatigue and stress and my body was just warn out. Jerry took care of he girls this entire time, he is a really great father and always watches out for them.

Yesterday was a rough day of hell. Raylee was eating and drinking just fine but every time I gave her medicine she threw up. She has mastered the gag reflex to do exactly what she wants. She doesn't want any medicine, so when it's forced she ends up getting her way anyway. Explaining to her the medicine will help her feel better goes in one ear and out the other. She covers her mouth, hides her face, and puts up a big fight about taking these. She is not going to give in. She is stubborn...a fighter! These are good traits to have in fighting cancer, but when it comes to antibiotics that prevent a pneumonia that is common in cancer patients after chemo.....it makes being so stubborn-really scary. Calling the doctor didn't seem to help they said to give her saline crackers 30 minutes before the medicine. So when all else fails.....call the pharmisist! I found out a trick nurses use at the hospital--they flavor oral meds with snowcone syrup and the hospital pharmacy sales the favoring.....it is just simple snowcone favoring 5X concentrated. So I went back to the hospital yesterday evening to buy the flavoring. I drove there with the hardest song from Def Tones blasting from my car--I was super mad and frustrated, desperate for a way to make this easier for my baby! This isn't fair....it shouldn't be so hard for Raylee, all she wants to do is play and be a little kid. She says, "I don't want medicine I am better." This is an age full of fun discovery and adventure....Raylee is going to have a rough summer--all she wants to do is play but she gets super tired.

By the way....the snowcone flavoring did not work....not yet anyway. Raylee is too smart to be fooled. Since today is a new day, we are going to outsmart this smartie pants. Today Raylee is going to be tricked in taking these meds or she's getting them in an IV. The pharmisist also said to add her meds in juice....tried this last night before she went to bed and she drank it without knowing and held everything down. So today we will attempt to manipulate the headstrong little princess! :)

Good News and Bad News

Today we have some good news and bad news. Good news first! The tumor is made up of more benign cells than malignant cells. Malignant cells are the cancerous cells. Also, we donated tissue from the biopsy, blood, and bone marrow, to a Neuroblastoma Biology Study that researches and examines cancerous cells to determine whether or not the cancer is amplified. They call it n-myc; and Raylee's came back negative, or non-aggressive. This study will also look at the make-up of her genetic material or DNA in the tumor cells. Once the tumor is removed it will be donated to the same study. We hope it helps scientists learn more about this type of cancer. If the n-myc test came back positive then Raylee's treatment would have changed to an even more aggressive treatment plan.

Now for the bad news! :( As far as the oncology drs were concerned, Raylee had a good day yesterday. Since she had a 'good day' with treatment they wanted to advance her, which means move the next days chemo up 2 hours. This was the plan until Raylee snapped her central line. She thew-up on her favorite blanket & Jerry stepped out of the room for just a minute to throw the blanket in the washer; at this time I was home with Jorja. Well, Jerry was cornered in the parent laundry room by a mother whose daughter is a patient with cancer and she wouldn't stop talking to him. He was gone about 15 minutes. When he came back to the room Raylee crawled out of bed and her central line was snapped. This is super scary because the line is a tube that goes into her chest through a large vein into her heart. No air or bacteria can enter the line, if it does her life could be at risk. An IV team had to come in and repair the tube. The glue used to repair the tube takes about 4 hours to dry before any fluid or meds can enter it....this means chemo was delayed....which also means we will be here another night :( Jerry feels super bad he left the room. It's hard as parents not to blame ourselves for every thing that goes wrong. We learned a lesson though....never leave her in the room alone when she is awake. She doesn't understand the IV tubes and IV pole must follow her.

Blame and guilt are common feelings you feel. First you blame yourself for not knowing your child had cancer, then you feel guilty you didn't know, then anger. The social worker told us these are common and normal feelings. Did I ever mention the social worker checks on us everyday. Her role is to help us cope with all the stress, anger, guilt....everything you feel basically and to connect us to any resources we may need.

The Beginning of Chemo

We admitted Raylee in the hospital today (6.7.11) and it's after 1:00 am and the last Chemo drug for today is going into Raylee. She is sleeping peacefully. She's had a very long day with lots of testing & waiting. The thing that seems the hardest for her is when the nurses need to change her bandages, especially on her central line. This bandage was changed today & it took 45 minutes with 4 people holding her down. It didn't seem like 4 people was enough......she was screaming as loud as she could the entire time. This was really hard especially because we helped hold her down. She is definitely a fighter and very strong! She was trying to kick the nurse ;)

I had no idea the prep for Chemo took so long & involved so many other things such as urology, audiology, cardiology, and so many labs on her blood & urine first. We had to wait until everything was perfect before the treatment started. They started around 11:30 pm.

We are in a restricted unit at the hospital with strict rules. No more than 4 visitors at a time including parents, no live plants or flowers, no one who is sick with something contagious is allowed, and all the doors remain shut due to the venting system keeping the air clean of germs & bacteria. We are not allowed to take Raylee out of this unit. Sometimes they have us wear masks depending on what is going on. When changing her diapers after Chemo we wear special gloves & dispose of it in a special bag & garbage outside of her room. When handling the IV bag with the Chemo meds the nurse wears special gloves and robes. I'm learning so much about this....stuff I wish I didn't have to know. It's late & I am exhausted. Praying that Raylee has a good day tomorrow.

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At 2:30 am Raylee had a bad reaction to some of the anti-nausea meds. She was screaming, throwing her arms and body around, kicking and trying to leave. She wasn't all the way awake as she seemed to be in a dreamlike state acting out in a terrible nightmare. It took the nurse and I an hour to calm her down. I would compare her to a child waking from anesthesia but will more energy behind the disoriented state. This was rough...one of the most difficult things since the diagnosis. Nothing would comfort her and it was an empty helpless feelings. I am sure Raylee is confused and scared this is all new to her as well. She is too young to comprehend why she keeps going to the hospital and having so many different people examining her and such. This was a tough day but we got through it, she rested, she ate a little, she held down most of her food, her blood counts looked good. She was an onry little thing and was very hard to please but to her doctors she couldn't have had a better day....they were very happy with her day.

We are hanging in there. Jorja misses her sister and has slept in Raylee's bed. She worries about her but we try to keep her busy with the help of grandparents. Today she went swimming with her grandma and cousins.....that made her day! She is definately going to be her sister's keeper.

...continued from Raylee's Story

Late this morning oncology called us and explained they were pushing Raylee's Chemo back a day in order to ensure the testing she needs prior to Chemo treatment are completed. This means......we did not begin Chemo today. This was a little frustrating because we had our bags packed and were ready to go, however, it was also a blessing because the feeling of starting this is not pleasant....plus it is my mom's birthday today; not exactly something I want to remember on my mom's birthday. Delaying another day may seem like the beginning is dragging on and on, but it didn't. We decided to use this time to have a little fun before we have to keep Raylee away from germ infested public places. We went to lunch and then to a local aquarium where we were astounded by sea horses and jelly fish. All I can say is Heavenly Father is a great master of creativity in all living things! After a while we were not able to observe all the creatures at the aquarium because Raylee was in pain and we went home. At home we watched Toy Story 2 about 5 times---it is worth watching over-and-over to hear her sing along with the song 'You Have A Friend In Me.'

Raylee's treatment will be part of a clinical study. She will have 2 rounds of treatment and then a CT Scan to evaluate if the tumor has shrunk 50%. If so, they will remove the tumor. If not, she will have 2 more rounds of treatment then another CT Scan. In regular chemotherapy for Stage 3 neuroblastoma, children have 4 rounds of chemo prior to the CT Scan to determine if the tumor has shrunk. The clinical study is trying to prove children do not need extensive chemotherapy. The drugs used in regular treatment and the clinical study are the same. The treatment will take 3 days with 4 different drugs. All the drugs are given on the 1st day. On the second day one of the drugs is given again, and on the 3rd day another one of the drugs is given again. Remember when I said Chemotherapy has side effects???? Well they are countless....there is no way I can list them all. Some of the major ones are nausea and vomiting (they can give her additional medicines to help alleviate this), fewer red and white blood cells, hair loss (we took our girls to get their pictures last Saturday before Raylee loses her hair :(  ), poor immune system, hearling loss, and damage to the heart....for these reasons she will have a lot of labs done on her blood, hearing tests, and echocardiographs. Once she is home we will give her medicines in shots to boost her white blood count to strengthen her immune system. Right now, Raylee has a central line in her chest and we flush it with saline and Heparin twice a day. Heparin is a medicine which prevents the incision where the line goes through the chest from clotting.

Raylee knows she is sick...she keeps asking to go to the doctor. Today she found all the Bandaids and put about 15 of them on her arms and legs; she said she was all better. If only a Bandaid was all it truly took to cure her and all the children who are undergoing an illness.

....continued from Raylee's Story

How do you prepare a 2-year-old for Chemo? How do you prepare yourself to put your child through Chemo especially when they do not understand what is going on? It seens impossible to prepare for....I don't know where to begin or how to approach this. Tomorrow we go to the hospital and Raylee will receive her 1st Chemo treatment. She will stay in the hospital for at least 3 days as the medical staff will monitor her closely. She will have some hearing tests and an echocardiograph prior to Chemo. This is because the medicines in the Chemo treatment have side effects that can cause hearing loss and heart problems. There is no question that Chemo has horrible side effects....I ask myself the question 'what is this going to do to my baby in the long-run?' However, when you weigh out the side effects to your daughter's life it seems like there is no other way. The oncologist said our plan is to attack and focus on the cancer first then on the side effects of treatment.

I am glad our family was able to have this weekend together prior to treatment. It was great to have Raylee home.....she had a good weekend. She acted like herself....she sometimes thinks she is a puppy and will crawl around on her hands and knees and try to lick your legs. She plays this for hours and will not respond to her name so you have to call her 'Puppy!'

We do not know what to expect tomorrow....the unknown makes this really scary. We are grateful for our family, friends, members in our ward, and neighborhood who have prayed and fasted for Raylee and our family and who are thinking of us. Thank you for being our crutch at this time. We feel your love and support and couldn't do this without you. I don't understand why this can happen to a young child, especially my child, but I know our Father in Heaven has a purpose in all things. I wish I knew what the purpose of this was, but in this life I may never know. The difficulty of this is.....I want Raylee to be better....but then, I don't want tomorrow to ever come. Tomorrow this becomes real.

Raylee's Story

On Monday, May 23rd Raylee went to the emergency room with a severe tummy ache. After an x-ray revealed some unanswered questions a CT Scan was ordered. After the CT Scan, we were informed Raylee had an unknown mass in her pelvic area. This was the day our ordinary routine lives became confused and surreal as we were told it was a tumor. We lost track of time--it seems as if time stopped at that very moment.

Proir to this Raylee was a healthy child. Just two days before her 'tummy ache' we were riding dirt bikes and 4-wheelers on the desert. That Monday morning Raylee woke up happy and a free spirit---ready to start the day playing with Parker the dog and Grandma Patty. We had no idea a 'tummy ache' could be a tumor--but we are extremely grateful the doctor in the ER found it.

Raylee had surgery the following day but the surgeon was not able to remove the tumor. Instead a biopsy was completed which revealed she has ganglioneuroblastoma; meaning she has a childhood cancer with both malignant and benign parts. According to the American Cancer Society, ganglioneuroblastoma contains neuroblasts (immature nerve cells) that can grow and spread abnormally. It is a common cancer in infants and the 4th most common type of cancer in children. Some research has found neuroblastomas develop when normal fetal neuroblasts fail to become mature nerve cells or adrenal cells....but instead contunue to grow and divide which may result in a tumor as it grows and grows.

Following the biopsy, we had a week full of additional CT scans, bone scan, bone marrow biopsy, and an MIBG scan. Her tumor is very large around the the size of a softball--it is hard to comprehend this fits in her little body, especially because she is such a small child. It sits in the middle of her pelvic area against her spine, while pushing on her bladder. The results of these tests show the cancer has not spread......we are extremely thankful for this blessing, however, the surgeon said it would be complicated to remove the entire tumor.

After spending a week in the hospital we are exhausted in every way...physically, mentally, spiritually, and emotionally. We have an unpreditable road ahead of us...but we are willing to do whatever it takes to help our baby girl heal and get better.

Friday, June 3rd, we were told the neuroblastoma is a Stage 3. Stage 3 means the cancer cannot be completely removed with surgery and it has crossed the midline (on both sides of the body). She will begin Chemotherapy next week in attempt to shrink the tumor prior to removing it all together. We are blessed to have amazing oncology doctors and an amazing surgeon working with our daughter. We are blessed to have so many friends and family showing love and support for Raylee and us!