It started out as a normal day on a late sunday in August. my family was over swimming. My sister n law noticed Max’s jaw area was a little swollen. So I did what any other mother does these days and ran to google to see what I could find out. Well it sounded like adenoids and since Max had ear issues that made sense. As I was looking at the area that night I noticed Max’s lymph node was swollen to the size of a olive. Thats when I started silently freaking out.
We went to his doctor the next day. He was concerned but thought we should come back in a month to see if it had changed. Well the next day I swore the area looked bigger so my doctor had us come over. I am so glad I went with my gut feeling instead of the voice that said I was being a paranoid mom. The doctor agreed something did seem different and ordered us to go to get blood tests and x-rays the next morning. We arrived at the hospital and did the x-rays first.
While we were getting Max’s blood work done (not realizing this would be the first of many) the x-ray tech called us back upstairs for more shots. My husband and I looked at each other knowing something they saw must not have been good. Even though they told us they needed more shots we knew something was off. After the x-rays we left to take Max to my in-laws for the day and my husband to work. Within 20 minutes my cell was ringing and I saw Max’s doctors #. I started screaming. Right then and there I knew every parents worst fear was about to come true for us. We were told that the office of CHOPs oncology was waiting for our arrival and head there right now. I was screaming and my husband was numb. The nightmare had begun. Later that day we were checked into the oncology unit for testing.I cried for 3 days straight. I keep saying to our many visiting doctors please tell me he will survive and I could do this. Of course they couldn’t with out a accurate diagnosis. There suspicions were bone cancer. They never came out and actually said it but being on the oncology unit we new it wasn’t hard to figure out. I felt like I was in twilight zone for those days. Watching other parents and children and thinking is this us now. I was so scared.
After 2 days we got the MRI done and the results concluded bone cancer near his brain stem in there mind. Neither my husband nor I could function at that point. How do you stay strong for your child at that point. We didn’t do a good job of it so I just don’t know. Later that day we got a biopsy. The biopsy was suppose to take 10 minutes. It took 2 hours almost. They couldn’t find bone cancer and kept scraping. We had three happy doctors tell us it isn’t bone cancer but a benign desmoid tumor.
My husband and I were relieved for a short while. We talked to my brother and sister n law and they were researching away and we could tell they were discouraged but didn’t go into detail. We went home and had a week before our meeting with oncology to come up with a treatment plan and digest everything. I was doing my best to research a disease that there is little research on. With the help of my sister inlaw, I called doctors and other moms with children who have jaw desmoids. Keep in mind their aren’t many so it is a small community.
We got to our appointment on Friday and we were there for 3 hours. Going over basically our new lives of chemo, blood tests, MRIs etc. The worst thing I herd the doctor say was that she wasn’t sure if this chemo path we are taking will work that unfortunately bone cancer is easier to treat then desmoids because at least their is a set treatment plan. We left there so scared and discouraged. We started Max’s oral chemo right away. That was so hard. I felt like i was directly administering poison into his tiny body and who knew the future side effects including sterility. I know though that right now was what was important.
We were at oncology all the time but regardless this monster kept growing. By November it was 2 and half inches bigger. His speech was slurry, he was drooling, snoring and his airway was starting to compromise. I will never forget when another little boy said something about his drooling my heart sank and I cried. He was covered in drool like when he was baby but I refused to embarrass him with a bid. Just carried lots of tissues. In November we had no choice but to consider tumor resection. We didn’t know what to do. Even our surgeon said the success rate of them reoccurring was very high and we did not want to put him through a “useless” surgery.
In the end we know we are at the top children’s hospital in the country and had to take their advice. Their is a 70 % chance these beasts will come right back but it seemed we had no choice but to do the surgery. Dr. Chou his oral surgeon got all but 5 % of the tumor out which means he does not have clear margins. We are terrified this will come back but as of today we have had 3 MRI’s so far and this thing is stable! Stable is good in the cancer world so will take it! We will never be fully out of the woods without a cure though so we pray one is coming soon.
We are coming up on a year since Max’s diagnosis and I would never had made it through with out the support of friends, family, DTRF and our Facebook group The Desmoidian. What a great bunch!