Dear Lexi,
Yesterday we arrived at Denver Children’s Hospital and went straight up to the 7th floor. Your appointment with Onclolgy was scheduled for 10:30, we arrived a little early since I had to make a detour to Loveland to pick up Libby’s purse that she forgot at your doctors the day before. I had no clue how long it was going to take since we were heading up I25.
We were sitting in the waiting room past your appointment time (which never happens there) when a nurse finally came up to get you, or so I thought. She informed us that the night before several of the doctors on your team had emailed back and forth and decided that before you saw oncology that you should see orthopedics since the problem was in your bone. They figured that way they would have a more clear picture what was going on. They had rescheduled your appointment with an ortho doctor that we are not fond of for the afternoon, although all the doctors were on board, they had forgot to inform us of the new plan.
The nurse was sweet and offered to call over and see if they could squeeze you in earlier since we were already there. I let her know that we would be grateful if she could make it happen, but it needed to be with another provider because I have zero confidence with the doctor they had you with. The orthopedic doctor we really like, Dr. Donaldson, was unavailable. We were told we could see the “evil” doctor or the P.A. We chose to see the P.A. because we knew if he had any questions or doubts that he would not hesitate to collaborate with Dr. Donaldson to get us taken care of.
When the P.A. came in, his immediate thought was that although there was a tumor present, that the mass we were feeling was not bone related. He told us he wanted to get some better images of the arm to be sure, but also to reference later in case of tumor growth in the future. He assured us that all the tumors that you can see on X-ray are exhibiting all the features of purely benign tumors, based on the images from the day before. A nurse came in, took us next door for X-rays where you were a perfect patient, and then straight back to your room where we were told to wait for the P.A.
When the P.A. returned he promptly came over and asked to see your arm again. He was looking much more attentively this time and moving your arm back and forth slowly then quickly, then both arms. I couldn’t handle the tension and silence so I meekly asked, “Is it bad?” He responded, “Well, uh, uh, no, um, it’s not baaaaaad, uh…” Stacy, our cousin who met us at the hospital for your appointment, quickly retorted with “That doesn’t sound the least bit convincing.”
He laid out the X-rays and explained to us that the bones in the arm (ulna and radius) are growing at different rates. It is causing one of them, don’t ask me which right now, to dislocate. They can’t just pop it back in since the bones are only going to continue to grow and that poses a problem. He let us know that normally they will just do surgery to correct this, but because of you having maffucci syndrome in the mix it causes more problems and risks to consider. Since he isn’t a surgeon he didn’t feel comfortable giving us an idea of what to expect and he couldn’t answer the majority of my questions. I totally respect the fact that he knew the limitations of his knowledge and didn’t try and B.S. us. He did let us know that he would be collaborating with Dr. Donaldson and the pediatric hand and wrist specialist/surgeon to see what they thought the best plan of action for the situation would be.
We were able to leave the hospital after that. We got to have a little lunch with Stacy and head back to pick our kids up from school.
While we were at the school we made a pit stop to talk to one of our friends and let her know what was going on. Just about the time I finished explaining what I knew, my phone rang, a small miracle in itself seeing as how my phone has NEVER worked inside of the school before this. The P.A. Let me know that he was able to conference with the two surgeons and that they do think an operation is in your best interest. Apparently there are multiple ways to do it, all posing different risks. He said that scheduling would be calling to set up an appointment so that we could weigh our options and come up with the best plan possible for you. I expect to hear from them on Monday.
While I am so thankful, thankful to the point there is no explaining the amount of relief I feel that it’s not another cancer issue, this brought up a whole slough of new worries. How, as your mom, can I advocate best for you when you have a disease that they know so little about? How did they tell us a thousand different things that we needed to look out for with maffucci and this wasn’t even on the radar? What else do we need to be looking for? How do we know what is the right decision for your surgery? I guess at this point all I can do is pray for guidance, pray for wisdom, pray that you continue to thrive as the sweet perfect girl who continues to bring so much light to our lives despite the hand you’ve been dealt. Hang in there Lexi. I will always be here fighting for you, praying for you, wiping your tears when you’re sad, and screaming in your corner rooting your successes. I am so proud to be your mom. You’re a huge blessing in my life.
I love you so much baby girl. To the moon and back, infinity times infinity,
Mom
xoxo
P.S. I did ask and you CAN keep cheering! Woohoo!
Dear Lexi 
Praying.