We were just told our 4 year old son has a rare tumor inside his knee joint that may be cancerous. We were informed the he also has VM in his knee. That is all the info we really know right now.
We would appreciate any ideas, opinions, and/or regrets/concerns on doctors, treatments or anything that goes along with a difficult situation like this. All prayers are welcome! Thank you for your time and any replies you may send our way!
Welcome to the site,
I understand the horror of finding out your son has these issues. Our son had Epilepsy, which involved a lot of medication and eventually two brain surgeries. There is nothing fun about watching your kids go through something like this.
Initially, your best source of info might be the local DR. Take excellent notes: each of you should take a journal with you to every appointment. Write all of your questions down prior to the Appointment as you think of them. Make sure each of you have a copy of all of the questions. As you ask them, jot notes down of the answers. If the DR steps out, immediately start comparing notes to insure you each heard the same thing. If not, ask for clarification. Right after each appt, find a quiet spot and compare notes again.
Keep a copy of any test results you are given in your "book". If you don't get a copy of the report, ASK for one. As you are referred to specialists, you'd be amazed how often your medical records are at hand easily for future DRs to review. We've had Drs take what we had in OUR book, run a copy, to put in their records rather than trying to chase down the official one that is lost somewhere in medical never never land.
In a journal, log the date, Dr name, address, and phone of each appt. Keep a log of medications prescribed and any complications you notice. Same with things like MRIs, CT scans, etc. Right now, you can remember that you had an appt last week. In six months, you won't, but your journal will contain the right info. Almost all scans are digital now, so getting a copy of the disk is cheap, if not free. (With wife's AVM, occasionally, we sometimes paid about $100 to get a copy of the X Ray-like scans to carry with us.)
Since your son might have both a malformation AND cancer, right off the bat you will be dealing with two specialists. Up front, make sure they will work with each other. We phrased it like "we want you on OUR team, but it will involve close coordination with Dr X." Usually it worked fine. When you get to specialists, they sometime have egos that rival their salary!
We've had more than one doctor see our books, us taking notes, having copies of reports right at hand, comment to us how refreshing it was to see patients this organized! Things like with all our questions written down, we could ask them quickly. Not like we'd sit and ponder, wasting the DR's time.
Both with my wife's AVM, which was treated on the west coast, and my son's epilepsy, which was treated in St Paul, when seeking a local neuro, we explained in appointment #1 that the specialist in west coast and St Paul were the lead dog and would be calling the shots. We wanted our local guy in the loop, he would get a copy of any correspondence or medical report. And we welcomed his input to our specialists. Any testing that needed to be done, and could be done locally, our specialists worked it through our local neuro. Worked pretty well, mostly.
While most if not all the medical folks you run into will care greatly about your son, YOU TWO have the most interest in seeing this work out well, so don't be afraid to be a part of his treatment team.
Best wishes to you,
Ron, KS
Jessie and Jason,
If there's an option, you might consider a high-end medical facility that would have both specialists. We spent some time at Mayo Clinic in Rochester. Having doctors automatically coordinate with each other, both appointments and treatments, took that pressure off of us. It meant many long long drives, including one in a blizzard. But the doctors could look at a computer and see that we're already seeing Doctor A that day, so Doctor B schedules his appointment for a couple hours later that same day. According to US News & World Report, the top cancer hospitals are in Boston, Philadelphia, Tennessee and Texas. The magazine lists Boston, Philadelphia, Maryland, Texas and Missouri. I know that one of our specialists suggested a neurosurgeon at Stanford as being the best pediatric neurosurgeon for AVMs. Not sure how the hospital ranks for cancer.
Definitely get yourself an expandable folder or something to keep all your papers. We routinely ask for copies of medical records so we can have them to share with any doctor we choose without having to wait for records to be sent back and forth. We keep insurance papers, doctor reports and even disks of medical imaging on disks in our folder.
For now, try not to panic. You will be amazed how strong your son is. Enjoy the little moments you have right now. Enjoy the normalcy in your life right now. Once treatments begin, your entire lives will revolve around medicine. Obviously that has to happen, but it changes your lives in ways you can't imagine. Also, make sure you have supports for both of you -- people to step in to help with the house or everyday things (or any other kids you may have).
You can always come to this site for support as well. These folks are great and helping with moral support and answers. We have all dealt with AVMs. Maybe not cancer, too, but we can all relate. Many of us have children who have been through all this, so please feel free to vent here as well.
Best wishes to all of you,
Tina
I just went through this myself. I can not say enough about the stress that you are feeling. My son has an AVM with a Masson Lesion in it. The Masson Lesion mimics many severe cancers. He had a biopsy done and it took a month to get a final pathology report. I would agree about trying to find a "group" of doctors to work with you. We are fortunate to live close to a children's hospital that has a special department for vascular issues. My understanding is that Boston's Childrens and Philladelphia Children's are considered the top hospitals for these types of things.
There is nothing comforting about going through this. Do try to keep all of your medical records and try to be as patient as you can as you start through this process.
I will definitely keep you in my prayers.