Dear Lexi,
It has been far too long since I wrote you a letter. Truth is I have been so disappointed lately. Not by you, you and your siblings keep me going most days. I am, however, beyond disappointed by the doctors that are suppose to be managing your care, keeping you safe from your medical conditions.
We switched to a new oncologist. I was tired of feeling like I was being bullied into a care plan that we were not comfortable with. We want you monitored, we want blood work and ultrasounds done. We are NOT ok with subjecting you to the atrocious amounts of anesthesia that it would take to do the MRI scans that are not a necessity at this point. Your new oncologist, Dr. Mercel, understood where I was coming from. Agreed that there was a care plan that we would both be ok with, and has not been overbearing or wishy washy.
We were referred to a team of doctors to evaluate your foot. After waiting 2 1/2 hours past your appointment time to be seen, they looked at an old MRI and decided that it was neither a vascular malformation or a fatty tumor and that there is nothing we could do except get shoes custom made for you. I have spent hours upon hours trying to find some place that will make custom shoes for toddlers. I am convinced no such place exists. It breaks my heart to see you upset when Libby gets new shoes and your foot doesn’t fit.
Today we saw a new genetics doctor. The last doctor was absolutely the opposite of informative. Seems like 3/4 of the appointments we go to are merely for taking our insurance money because we get no information from them. Today was a different story. We were given the Maffuci Syndrome diagnosis back in August with no explanation and almost no information. The geneticist today was full of information, she even had a power point show printed out for us, complete with graphs and pictures.
Apparently you have mutated genes randomly through your body. They called them mosaic genes, meaning not all the genes carry the mutation. That’s how you survived being born, but also why you are likely to have a lot of random problems that come up. It is also very likely that this is not the only cancer you will have in your life. We were shown a bunch of studies and stats and they say that 1/3 of humans will have cancer at some point of their lives. I keep telling myself that you got started young and will be a pro at kicking cancers butt should it happen again.
We have to have your regular follow ups for your ovary. With the new information that we were given we decided that since they are already at your abdomen/pelvic region doing ultrasounds, that they can just do quick measurements of all of your “risk organs” so that if by chance something does come up that we can catch it more quickly.
I started this letter a month ago! MOM FAIL. Something about keeping up with all you guys and your activities and appointments while trying to maintain some normalcy around here. Time got away from me.
GREAT NEWS!!! Our amazing, wonderful, beautiful friend Ria, gave us a recommendation of a clinic to try and get custom shoes made for you. It worked!!! Your doctor put in a prescription and we went and had molds and measurements done and your new shoes should be being made as I type this! I really was beginning to think the only way that you were getting shoes was if Daddy and I made them for you. We were even starting to come up with ideas on how to make them. I think within the next month they should be here!
In other news. You are starting to potty train! I think Libby is really helping you. She is already so good and has been trying to show you the ropes. It makes my heart melt to see you and your brothers and sisters together. You guys have such unique relationships and I thoroughly enjoy being your mom. You had a sleepover at Nathan and Candy’s house while Dad and I went to his ball last week. You woke up in the middle of the night and instead of throwing a fit you quietly woke Mark up and got him to cuddle you back to sleep in his arms where you spent the rest of the night. Best siblings ever.
I also found this company, Headbands of Hope. http://www.headbandsofhope.com They make the cutest little boutique style headbands. For each headband purchased they give one to a girl who has been fighting cancer and donate $1 to St. Baldricks Foundation. I bought one for you and one for me. I think that it is such a sweet concept and I love everything the company is doing.
I will try and do better with keeping this up to date. I know I am missing some of the things that are happening. Most importantly, you are doing good. You are so strong and so inspiring and I am so in love with you. You are my hero and you make me want to be a better person.
To the moon and back, infinity times infinity, thats how much I love you,
XOXO
Mom
