We started a Facebook page as a place to provide updates on Fritz : Fritz and the Uninvited Guest
GoFundMe- We are past having any pride regarding our abilities to pay our own bills. We just went from a 2 income family to 1 income while increasing our bills.
Venmo- Money can't buy happiness, but it can buy a lot of other things and some people are uncomfortable with the fees GoFundMe applies: Erika's Venmo
GrubHub Gift cards for digital ones, please use jurban@ymail.com
Gift cards for things like GrubHub, KwikTrip, St Peter Co-op, or local restaurants in Rochester that we can get carry-out. Practical gift cards for Target, Sam's Club, and Costco are always helpful as well.
Our address, if people want to mail cards or gift cards or whatever:
Fritz Urban
C/O Joe or Erika Urban
407 Stones Way
St Peter, MN 56082
We aren't particularly concerned about our privacy when it comes to our address as pretty much anyone in St Peter can ID the house Fritz lives in as he is usually outside waving around a lightsaber. Fritz loves getting mail, like most 9 year olds :)
On March 25th, 2021 Fritz Urban went under the knife for a biopsy of a large tumor growing in his jaw/mouth and it was found to be cancerous. Fritz has been diagnosed with Ewing Sarcoma, which often develops in the long bones of the body, but developed in his mandible. Fritz's tumor went through a lot of testing and it came back as an Adamantimona-like Ewing Sarcoma, which is a more rare subset of an already rare cancer.
It is bizarre how quickly our lives have changed. A few days before the biopsy and cancer diagnosis, we called our family dentist, assuming (hoping) that maybe Fritz had an abscessed tooth due to the swelling and the bump we were seeing. She did an exam, a few x-rays, compared with his x-rays from November, started him on antibiotics, but then also consulted with an oral surgeon. We will forever be glad for care providers who looked at it all and suggested more images and consulted. There was no abscessed tooth and within 2 days of our dental appointment, we were in the ER having CT scans and speaking with that oral surgeon who sent us to Mayo Clinic in Rochester.
Ewing Sarcoma is rare and aggressive. There are less than 250 new cases of Ewing Sarcoma a year and it is a bone cancer that impacts kids who are typically 10-20 years of age. The occurrence of the primary site of ES being in the head/neck is about 1-4% of new cases, with about 10-20% of those being in the mandible. So, Fritz's cancer and location of his primary tumor happens less than once a year in the entire United States. Add to that the special characteristics of his tumor as an Adamantinoma-like Ewing Sarcoma and there is pretty much no data available on it.
Generally, when a child develops a new bump or a new pain, no one assumes it is a rare and aggressive cancer, so approximately 25% of the time, Ewing Sarcoma has already metastasized by the time it is diagnosed. Fritz had some very suspicious looking lymph nodes in his neck and a node on his lung. The lymph nodes of his neck and his lung were removed and biopsied along with his bone marrow and those all came back negative. We had prepared ourselves for a diagnosis of metastatic disease, so getting negative results were a blissful surprise. It does not mean that we aren't in for a challenge, it just means we are more likely to end this all with a living kid.So far, as of July 22nd, this kid has completed 7 rounds of chemo and had the surgery to remove his tumor. This surgery was called a bilateral mandibulectomy with a fibular free flap reconstruction. It was long and hard and he spent 2 weeks in the hospital recovering from it. If you have never heard of the surgery before, basically his mandible along with 7 teeth and the surrounding tissue were all removed from his mouth, then reconstructed using his right fibula and the tissue and skin of his fibular to fill in.
We will be going through a lot of medical procedures coming up. Fritz will complete 14 rounds of chemotherapy and at least 1 more surgery. Each round of chemo is administered in-patient in Rochester and lasts between 2 and 5 nights. We have not lucked out yet on getting in at the Ronald McDonald house when we go to town, so we stay in his room and often get a hotel room the night before or the night after if it is too late to drive. After chemo is done is when he will get his next surgery and then we will begin the process of trying to get him temporary dental work that will allow him to live a more normal lifestyle. He currently only has 3 bottom teeth, which makes chewing a bit of a challenge.
So far, the news has been favorable. His cancer has not spread and 90% of the tumor that was removed was necrotic.... that means 10% of the tumor had lively and jumping cancer cells. So, all the chemo we are doing now is to kill the 10% cancer cells that are hiding somewhere in his body, just lurking and waiting to come back.
Not going to lie. It has been hell.
There will be all kinds of unexpected expenses. We have health insurance and are forever thankful for that. We know we will not only meet our deductible, but we will end up meeting our maximum out-of-pocket of $7200. One thing we didn't take into account is that our medical insurance does not include our prescription coverage. We did have an absolute moment of panic in the hospital when we were told we had no coverage, but that part has been worked out.... thank GOD because Fritz requires a $7500 injection after each round of chemo to stimulate his bone marrow production. Our out-of-pocket expenses on prescriptions (which run through a separate prescription insurance) do NOT apply to our out-of-pocket maximums for our health insurance. There have been changes we have had to make to our house to make the house more accessible to a child who is now in a wheelchair or using a walker while he recovered from surgery. We had hodgepodged his room together, but now we know we need to make it a more permanent location. The room is a home office, so there is no closet, so we are purchasing furniture for him that has plenty of storage in the furniture and a bed that is taller and will slide less as he gets in and out of the bed with a walker.
Erika will need to spend the next year living with Fritz, primarily in Rochester. This means she will need to hire out her job... she is self-employed and will be without her income, but there just aren't any other options as Fritz needs the support of a parent to stay with him in the hospital for all his treatments and Joe carries the health insurance (which is VERY much needed).
If you happen to be a fully qualified birth assistant or midwife who would be willing to assist at births, this could be helpful in providing a rotation of breaks for my current staff. Please email me at : erika@rivervalleybirthcenter.com