My name is Ivan, also known as IRON IVAN. I am 3 1/2 years old and battling Cancer for a 2nd time since April of 2013. I was born with, and then misdiagnosed at 13 months old with a condition called Hemihypertrophy. There are huge variations in the severity of the physical conditions of Hemihypertrophy, however one side is always larger than the other. In this case my right side is has always been larger than the left. As well as the physical conditions associated with Hemihypertrophy there is the chance that the organs on the side that is larger will grow faster than the other side, and or faster then the body. Also associated with this could be multiple learning dissabilities. For me, its speech and language as well as my fine motor skills. However, with the help of some fantastic programs available to me and the starting of Early Childhood Development, have made huge leaps and bounds. The Childhood Kidney Cancer known as the Wims Tumors are also associated with this condion.
January 2013, my baby sister ( 10 1/2 mths younge than I am) had an appointment in the Genetics department at St. Louis Children's Hospital. She has been seen by multiple doctors up there due to high cholesterol, liver enzymes and thyroid levels. During the meeting with the Genetics department, the Doctor noticed that my sister was asymmetrical. She was diagnosed with Hemihypertrophy. During the questioning of "whether or not" my mother "had ever noticed one side being slightly larger than the other or not" my mothers reply was "NO but you ARE talking about my son?" I was then quickly stripped and evaluated and what was originally diagnosed as an "anomaly" was now diagnosed as Hemihypertrophy as well. At this time I was sent for labs to check my AFP-which is a blood test that checks for a rare Liver Cancer. Then and actual appointment to be seen as a patient was set for May 8th, 2013.
The end of February I was standing across from my mother, and she noticed a slight bulge on the right side of me. When she came over and lightly touched it...I told her (In sign language) that it "hurt". She immediately hopped on the phone, contacting the hospital to inform them of this new problem, she asked that during that appointment due to the 2 hour trip up there that they perform all necessary tests to find out what this "buldge" was. She was told at that time that it "just wasnt going to be possible"
March 30th, 2013, I was not feeling well and ended up in the Emergency Room due to blood in my diaper. During that visit, my mother made sure to point out that buldge. The E.R Doctor sent me for a chest X-Ray. Which came back showing nothing. However he called my doctor to discuss the buldge. My doctor wanted me to come to his office April 5th, which was the next time he would be in the office. At that time he measured it, felt and moved it around and said that "It didn't appear to be attached to any other organs, but was going to have to come out" He then referred me to the Surgery department and the surgeon on April 11th 2013 also up in Children's Hospital. What was to be a consultation ended up being a sedation and full run of tests. Including, an Echo, Abdominal Ultrasound, Chest X-rays, and a Cat scan. I was then sent home and we were to wait to hear what the results were. The Surgeon did confirm prior to leaving that what ever it was was going to have to come out, sooner than later.
April 12th, my mother got the heartbreking call. I was suppose to be at the hospital on Monday the 15th by 11 o'clock in the morning, and my surgery was scheduled for the 16th. When we got there and actualy spoke with the Surgeon, he informed us that the buldge was in fact a tumor and the the kidney was going to have to be removed as well. Surgery went well, but not only was it one tumor, there were actually 4 large ones INSIDE of my kidney! What my parents used to tease me about having a milk belly because I was a "Milk-A-haulic" was actually all tumor! After surgery, I had no buldging stomach left. I had a Port placed on my left side near my color bone during surgery as well, for chemotherapy treatments. I spent 6 days in the hospital and went home in time to celebrate my 3rd Birthday, before immediately starting Chemotherapy.
I spent 10 staight Monday's going to St. Louis for weekly treatments. I had one week off and then started back every 3 weeks. I completed treatment and was considered in remission on the 3rd of September. I was scheduled for end of treatment scans the 29th of September, but my immune system has been so horrible that I was unable to make that appointent due to having Bronchitis for over 2 week. So the next scan was set for October 14th. I was sedate and the scans were done. My baby sister had her 3 month ultrasound and labs done during this time as well. The scans came back clear except there was concern with something that they saw in the lung area. Knowing that I had Bronchitis, and still had fluid in my lungs they wanted to re-test in a few weeks. Giving a bit more time to recoup from the Bronchitis. The next scan was set for November 11th. My mother called to reset that appointment as well because again....I was sick. They called her back and said it was absolutely necessary that we get the scan done a.s.a.p even though I was sick and running a fever. The Doctors thought it was so important for the rescan because I was so sick. The scan was then set up for the following day November 12th.
I was prepped for sedation and the radiologist on my team of doctors said that it a very imortant that we get a picture while awake, so that I could hold my breath. My mom said "he will flip out the minute you take him from me, and he has no idea how to hold his breath" That's when for the first time we were informed that mom could go with me. She stood at the back of the machine, holding me hand, talking to me, kissing my forhead and keeping me calm. I took a deep breath like she did, and they took the picture. Then it was decided that instead of sedating me, that mom would just stay with me and continue to comfort me. I was a "Super Hero" and did the whole Cat Scan while holding her hands.
November 14th, my Hemoc (Chemotherapy Oncology doctor) called and once again our family was given a huge blow! There were 3 new tumor that had developed where that kidney was, my surgery was set for the 22nd of November. My parents threw me a big party that weekend, knowing that once again I was going to be put through surgery...recovery...chemo and this time was told radiation. However, Wednesday before my older sister left for school I had told her that my belly hurt. My mom kept her eye on me, and since I was running around, playing and carrying on as usual, was sent to school. Thursday I woke up crying and didnt move from the couch all day. Mom called the Hospital and finally got a call back at around 3:30pm. saying that I needed to be taken to the Emergency Room up at Children'a hopital. When dad got home, mom had everyones bags already packed and waiting and we headed to drop dad and baby sister off to family for the night. Mom, my sister and I headed to the hospital. By then I was running a fever and it was mentioned around midnight that it may be possible that the surgery would have to be delayed due to fever. which would have been lousy as my dad had out of town family come in to be here for the surgery.
I was admitted to the hospitally finally at about 1:30a.m. By 5:30 a.m. it had been determined by my surgeon that although I was running a fever that it was more dangerous to put the surgery off than it would be to go ahead and do it with me running a fever, due to the rapid growth of the tumors in a months time frame. So as scheduled, I was being wheeled down to the Operating Room prep rooms by 7:30a.m. I saw my dad before I was sedated, as well as my grandma, aunt, cousin brother and sisters, and of course my mom. Surgery took 5 hours, once completed my family was informed that 1 of the tumors went from the front of me to the back of me. A 2nd one was growing into the appendix and had actually ruptured and was bleeding into the appendix ( which was the cause of the pain I had been having) so it too was removed. The 3rd one was much smaller and was located on my intestines, and it was successfully removed as well. My parents were told that they were able to get 90% of it out this time.
Tueday the 26th the Pathology report finally came back. We found out that this was in fact another wilms rather than a new type of cancer. It was then that my Hemoc Doctor informed my mom that the other 10% was sitting on the back of my liver, and that the surgeon felt it was too risky to try to remove it. They are hoping that the Chemo and Radiation treatments are going to take care of that portion that was not removed.
So....here we go again! This time, I have 18 days of Radiation. They are treating my whole abdomin to protect the other kidney, as well a the fact that one tumor had ruptured and may have seeped. Monday's they will access the port and it will stay accessed til the end of treatment on Friday's. I get weekends off and of course Christmas! The last day of Radiaiton is the 31st of December. It is undecided YET, if we start Chemo before the end or radiation or the 9th of December as orginally mentioned. This time Chemo will be inpatient. The first time will be a 3 days stay in the hospital. Then I will get 3 weeks off. Then I will go in for 5 days, and get 3 weeks off. It will alternate that pattern until I have had 4-3 day stays and 4-5 day stays. The reason for the stays is because of the medications I will be given. Many are stair stepped, some cant be given with other medicines. Some take an hour to run through its cycle, others up to 24 hours.
I got to come home just in time for Thanksgiving with my Dad, My sisters and my mother. But next Wedneday (December 4th) starts the new journey ahead of me. Im doing great. Trying to run and play with my little sister, although I am not supposed to be. But after all they dont call me IRON IVAN or nothing.
We live 2 hours from the hospital, we have only one vehical for both my parents to share. We have to worry about daily trips for radiation and the gas exenses for that, as well as wear and tear on an older mini van, that has been having issues to begin with. Or we have to look into my mom, baby sister and I being housed up there, and then worrying bout getting to and from the hospital, the cost of lodging, and food for all of us through the course of the next month. And that is just the stress and worry of the radiation portion of treatment. That is not even including the fact that we already have massive outstandng medical bills from deductables for me and my sister. It has nothing to do with every day living expenses and bills.
Nor anything to do with chemotherapy getting to and from and the extended stay and expenses.
My family hopes that during this time we can as a family spread some awareness regarding not only childhood cancer, but Hemihyertrophy as well. After all my parents had never heard of it, and both my sister and I have it. So far she is good. No tumores, no health problems and than goodness for that. We already live paycheck to paycheck and are struggling financially as it is.
Thank you for taking the time to read this. I do have a facebook page as well. Its called LOVE IVAN. you can like my page and share it, and follow my journey as I beat this thing ONCE AND FOR ALL!!!!
God Bless you.
- cindy long
- Lynda Peake
- Jen Van Horn
- Paula Baca
- Arica Butler
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