An short update....

So - if you've found this because you have someone with an Infantile Digital Fibromatosis diagnosis - I'd just like t update you on where we are - the history is below.

Will is now 4 years old. He has two tumors due to the incision and cut during his excision. We are under the care of an upper extremity specialist - and under his advice, we're just watching it for the time being.

It currently does not restrict movement and is not affecting bone development. He tells me that all of his research points to it taking up to 10 years for these to spontaneously resolve. Will's tumors are not growing any further at this time (at about 2.5 cm) but are also not decreasing in size.

We have considered Moh's excision, however for something of this nature, it's a lengthy procedure and not one that he's likely to sit through well - also not something you want to anesthetize for that length of time.

So - we wait. That's basically all there is. I can tell you that the tumor is more sensitive than the rest of his hand. If he say - slams it in a door - or gets it caught somehow (which does happen) it hurts more than if it were another finger. There is a lot of crying. But at this time, we don't see any additional tumors or growth.

I will try to get a picture of it tonight to post, in case anyone wants to see it.

I will also gladly answer any questions that I can if you're a mom or dad who is dealing with this diagnosis!

Sara

The beginning.

So - here's the story that starts the journey.

In September 2009 I gave birth to a perfectly healthy baby boy we named Will. Will has always been happy and fun - quick to laugh (and sometimes cry) and completely and totally fearless.

Just minutes after my little man was born!

One day in June of 2010 he and his sister were playing, and he started to cry. She'd pushed or pulled, he'd fallen and was holding his right hand. When I examined it, I was startled. There was a sizable lump on the side that I'd never seen before, and I was afraid that he'd dislocated the middle finger. 

In a mild panic, I called our family GP, and thankfully he was able to see us right away. A thorough examination and x-ray later he was able to ease my mind that it wasn't an injury. The bones were perfect and the skin unbroken. However, we were left with more questions than answers. He thought it might be a cyst, but figured a consult with an orthopedic surgeon was in order. 

It took about a week to get that appointment. When we did, the surgeon also felt it was likely a cyst with a 'wait and see' approach being best. 

4 weeks later, mid July, we headed back and it had grown - exponentially. At this point (and I don't believe I have an photographic documentation - sorry!) it was taking up about the middle third - on the side - of that middle finger. 

The ortho called in a colleague for a second opinion and they decided that excision was the best course, just as a precaution. Even at this point everyone assured me that it was no big deal - it had to be benign. 

As we had no insurance and do have a local Shriner's Hospital, we were referred there. The application process lasted a couple of weeks, and we got an appointment - a month and a half out. 

It was at this point that the mama bear kicked in. :)  I called and (very nicely... no really...) explained that this was an extremely rapidly growing tumor and was there any way they could get us in sooner. They did - I love these people.

On vacation a few weeks before surgery.

I have to say that going to a Shriner's Hospital is such an experience - the waterfalls and HUGE stuffed animals are so fun! There are fun murals everywhere and the staff  seems to be there because they want to be - it's not just another job to them. (Why can't regular hospitals be this way? I think all patients would do better if they got a Build-A-Bear!)

Our initial appointment was long, and Dr. Davids finally broke it all down for us. He had NO idea what this tumor was, but it WAS a tumor. It needed to be excised for safety and the sooner the better. He made us no promises, but thoroughly explained the scenarios in both malignant and benign diagnosis and set up surgery for August...

So it came that a few short weeks before Will's first birthday we were in for his first surgery. 

Being a mom who has never been under the knife - this was a really daunting thing to me. Even though we're here in town, Dr. Davids wanted us to follow the usual Shriners protocol. We showed up the day before surgery and spent the bulk of the day meeting with doctors, the anestheseologist (who I just happened to know - whew!) and getting settled in to the room. 

We were sharing a room with a young boy who'd broken his elbow on a growth plate and was having to do a re-break so that it would begin to grow again - he was a serious trooper!

Post surgery with a full arm cast.

I think one of the biggest helps for me through all of this is that I was still nursing Will. It was hugely helpful to be able to nurse him straightaway after surgery. It was a soothing thing for him - he stayed well fed/hydrated and went right back to sleep for several hours. I think it was also psychologically helpful for me - I felt as though I was able to 'do' something to help him. 

The only reason I mention is for any moms/families out there in this circumstance that are also nursing to possibly encourage you to continue it through surgery if that's necessary for you. It was a jarring time for us, but that was one constant that was nice to hang on to. 

With the excision successful, we had to wait a day for pathology - the longest. day. of. my. life.  Until this came back, we had no idea that it was benign. Dr. Davids still wouldn't conjecture after surgery what it was. "It's yellow." That's about all he could say. :)

Once we knew what it was, we knew that there is the potential for it to resolve on its own, and that wait-and-see is definitely now the best approach. 

1st birthday party - finger post-excision.

So that's what we've been doing for over a year now. Waiting and seeing. We've been back to Shriner's 3 times since then. Dr. Davids has moved on to another hospital, so finding someone else who was familiar with our case was slightly difficult since IDF is rare. It requires some research on their part. But I think we're in excellent hands now. 

Our next appointment isn't until March 2012, but I must say that I think it's getting to be rather large. We occasionally have incidents where it gets in the way, or he tries to put his right hand somewhere that his left would fit and gets it stuck. That is typically quite painful. I think (and can't be sure as he's only now 2 years old) that it's more painful to pinch or hurt the tumor than another finger. 

Just yesterday his sister got his hand pinched in our screen door and we were left with about 10 minutes of screaming in pain. :(

Will & his sister, Samantha, Spring 2011

So anyway - that's the story to date. If you have any questions - let 'em fly - or want to share your experience, I'd love to hear it. That's the whole reason this blog is here!

Much love - 

Sara