I battled cancer, ALL Leukemia, for two and a half years. It was the hardest thing I have ever been through!
The chemo and steroids did have minor side effects. For example, mouth sores, mood swings and being nauseous, etc. But, there are long term side effects that I have even after I finished chemo. From the steroids I now have a vascular necrosis in both knees and my left shoulder. My shoulder is collapsed. My only options are leave the shoulder as is or do the shoulder replacement and use the smallest one possible.
Lately, I have been in constant unbearable pain and nothing helps. I am on heaving medication and that isn’t helping. I can’t sleep and my pain is 10/10 all of the time.
A couple weeks ago I went to my clinic, Children’s Specialty Center (CSC), for an infusion. The infusion is to stop any further deterioration of my bones. It was a three day infusion over four hours. I am praying it works. If it does I will get it every four months.
I know God has plans for me and I will keep standing in my faith, trusting in his plan. God is my healer and I will cry out to him in my pain because I know he will heal me. Please pray for me. There is power in prayer.
This past week my family and I went on vacation. It was nice not having to worry about cancer and just enjoy ourselves. God has blessed us with a trip to Disneyland from my church, Valley Bible Fellowship. I am beyond grateful!
We spent a couple days in Vegas on the strip. We went to the new chocolate shop, HEXX, and got bags of chocolate and candy. We also went to Guy Fierri’s Restaurant which is amazing and has delicious food! We also went to the Bellagio to see the “Under the Sea” theme flowers. On our last day, we spent the day at the pool. We got a cabana. My aunt from Ohio called my dad and said she was passing through Vegas and we could see our cousins. My cousins came to our hotel and swam with us all day and then spent the night at our hotel. I was so excited to see them we haven’t seen them in 4-5 years.
We left early that morning and arrived in California that afternoon. We decided to start our day with lunch at Denny’s.
We then went to get our park tickets. We would be going to Disneyland that day and California Adventure the next. None of us had been to Disneyland before. We watched fireworks and the show at the castle. It was their 60th anniversary. We went on a few rides too.
The next day we headed to California Adventure. First went to get our fast pass for the Cars Ride. The ride that was on the top of our list! We then headed to the Hotel Tower of Terror. My sister and I rode that ride and it was scarier than I thought. I love roller coasters but the video and the unexpected up and down scared us. After that we walked through the Bugs Land and road all those rides. It was so much fun! Then came the driving lesson with Autopia! It was so funny my dad didn’t know my sister was in front of him and my brother. He kept thinking, “Who is that driving so badly”! We also went and seen a couple shows and took pictures with Elsa & Anna.
Finally, it was time for the Cars Land ride! My brothers dream came true, we got to ride in the Lightning McQueen car! The ride took us through the town and pulled up next to another car and said, “Let’s Go Racing”! My dad doesn’t like roller coasters so the hills and riding on the wall freaked him out. We won the race though!
We finished our night off with ice cream and the Rain Forest Cafe for my sisters 13th birthday. How time flies!
It was so nice seeing my family smiling and laughing. Having such an amazing time! I am so blessed with the people I love!
Last week, Wednesday, I went to see a specialist about my shoulder and replacing it.
While I was on chemo I was also taking steroids as a part of my treatment. Which caused bone necrosis in my left shoulder and both knees. My shoulder has now collapsed and is no longer there. It causes me extreme amounts of pain. Because my shoulder is so bad my options are very limited. Dr. Kam basically told my parents and I that I have two options: 1. Leave the shoulder as it is. Or 2. Do the shoulder replacement and use the smallest replacement. We definitely want to go with the replacement but. neither have that great of an outcome.
He said, “Kids think oh well my arm is better so I can go an play baseball or something. Because kids are more active their replacements wear out quickly.”
He then asked my hobbies which are writing, reading, art, crocheting, blogging, and much more. Dr. Cam told me those are good hobbies because my arm won’t be moving in crazy ways that will wear it out easy. He does want to give me some range of motion back which right now I have close to non.
I shared my concern of being worried about how long the replacement will last. He responded, “That is a good worry to have. It tells me that you will take care of your shoulder after surgery.”
My growth plate is still open and Dr. Kam said as soon as they close he can do the surgery. About 3 months maybe longer, it is almost closed though. He will have a mature bone so during surgery he can treat my shoulder like an adult bone.
He showed us the replacement. It will have a really short stem that will go down in the bone and a round head that sits where the dead bone was. The surgery will be about an hour and a half. I will be in the hospital for two days and he will stitch it up on the inside so I can take a shower when I get home. I will wear a sling to protect the Rotator Cuff because he has to cut through it to put the replacement in. Recovery will be about six to eight months.
It is hard to hearing all of this news. I am almost 15 and I shouldn’t be dealing with this. God didn’t bring me this far to leave me now. I continue you to have faith in him and it will not waiver.
This past week I went to Disneyland.
A friend of mine, Gabriele, asked me to stop by a flower bed where she spread her daughters ashes. She lost her daughter, Leah, to brain cancer. Leah loved going to Disneyland, the Little Mermaid, Ariel and her mom. Leah was her moms little mermaid, her sunshine. Her smile could light up a room. Although I didn’t know her personally she will always hold a special place in my heart and her beautiful mother will too. Gabriele is so strong. An so was her beautiful baby girl. While I was at Disneyland I could feel Leah’s beautiful spirit. I miss her dearly and so does her mother, very much.
Whenever you see a rainbow just remember it is a hello from the beautiful warrior princess Leah. Smiling down from heaven.
June 9, 2015 I went into the clinic for Pentamidine. I am now cancer free as of then.
As my nurse Jeramy finished accessing me and giving me my pre medication, Pastor Doug and Doc Jones walked in. I was extremely surprised! My mom had been out of the room talking with them . I didn’t suspect anything though because, it is usual for her to leave the room and go see other families at the clinic. When she walked in with them I had no ideal what was going on. They then presented my whole family and I with tickets to Disneyland and a one night stay at the Disney hotel! I was so speechless all I could do was smile.
With all my family and I have been through we deserve it. When we do activities we do them together, never separate. If one of my family members or I aren’t feeling well we don’t do anything at all. Because of the side affects from the chemo not going out was often.
I am so appreciative to my church – Valley Bible Fellowship and the Plus one project for doing this for my family and I. We need to just have a fun day to smile, have fun, and not think about cancer. Thank you to my wonderful church and the people who God put on their heart to help us.
Mickey Mouse and the Gang is calling. Hopefully off to Disneyland soon.
Here is the link: https://www.youtube.com/watch?v=10SjNKEzjzk&feature=youtu.be Video is on youtube under Vegas Church, Plus One Minisry – Alyssa Smith
I was diagnosed with Acute Lymphoblastic Leukemia on February 20, 2013. It was a huge shock. The Thursday before I was at the pediatrician and two doctors fought over whether my spleen was large or if I had a lot of muscle. I was in a lot of pain. They said it was just growing pain – I don’t blame them for not knowing.
We were out of school for President’s weekend. When my parents came home I told them I ate but barely took a bite of food. My mom said I had to eat and gave me a small late of food. After I ate, I went to sit on the couch and screamed in pain. My side was hurting and I couldn’t breathe. I was literally in tears. My dad took me to the ER at Sunrise but, it was packed so we drove all the way to Southern Hills Hospital. They drew blood, took my weight, height and symptoms. I was very fatigued, couldn’t breath correctly and lost 20 pounds in a month. They got me set up in a room. I dozed off and was woken up to a nurse trying to move me to another gurney to be transported to Sunrise by ambulance. My mom came in just they were putting in an ER room. The doctor said did he tell you the L word. My mom looked at my dad confused. My dad was convinced it wasn’t that but, it was. I was transferred to the pediatric oncology floor. That night was rough. I was on oxygen and every time I moved I was hurting and screaming in pain. One of my lungs was partially collapsed the other filled with fluid and my spleen enlarged.
The next morning my parents told me the diagnosis. I was overwhelmed with emotions. Being diagnosed with cancer was something I never thought could happen. When I found out it was cancer that was making me so sick I was extremely angry at God. I asked God “why me” several times. One day he came to me and told me that everything would be okay to place my faith in him. Another day He told my sister that I was the strongest one in my family to handle this.
Over the course of the next week, my port was placed (immediately) and chemo was started. I also had a bone marrow and lumbar puncture procedure.
I have gotten on my knees many times and just cried to Him for help. He has been by my side and carries me when I am weak. Through this journey he has taught me faith, trust and to lean on him in my time of need because he is my strength. When I am struck with worry and doubt, I give it all to him and try to remain in faith. The verse that I live by everyday is Philippians 4:13, “I can do all things through Christ who strengthens me.” Even though this is a storm I am going through I have been blessed to wake up every morning and praise Him. With God I am finding the joy in this storm.