Dear Lexi,
First off, I want you to know that no matter what you are feeling today, no matter where this journey has taken you so far, you are and always have been such an incredible person and we love you more than words can say. Today, November 30, 2013, you are 14 (almost 15) months old and this has been the craziest week of your live thus far. But, don’t let me get ahead of myself.
When you and Libby were born, from the moment we laid eyes on you, Daddy, Mark, Sam, Miley and I were head over heals, to the moon and back a million times, in love with you guys. You and your sister were absolutely perfect! You completed our family and we will forever be grateful that God chose us to be your family here on Earth.
At the hospital Libby gave us a good scare. She had to go to the make shift NICU type area at the Army hospital where they ran test after test and gave her a few different medications, but she quickly recovered and all was ok with her. At mother baby we had the most wonderful nurse. Her name was Carol. Carol spent so much time with us helping me get adjusted to life with TWO babies. She held you, rocked you, fed you and even changed a few diapers too. Now, this is where your story started to change. On the second morning of our stay Carol came in for her shift. She came into our room first to give you and Libby your love. She picked you up and started rocking you and cuddling you and rubbing your feet. Your foot.
In all the many hours of holding your perfect little body how did we not notice? Your left foot seemed to be a bit swollen. Carol assured us not to worry, but said she thought the doctor might want an x-ray to be sure that your little bones were not broken in the birthing process causing the swelling. She took you back to radiology and they said your little bones were fine.
Fast forward. We got referred to person after person. From the nephrologist and the genetic specialists to pediatric orthopedics… Dad had to go on a trip to California from mid October to mid November 2013. Durning that time a few things happened. First, your pediatrician retired and second, you started growing breasts. Boobs, my 14 mo old has boobs. This can’t be normal. A few months before, you started to develop tiny little breast buds and we were told not to worry that it was normal. This can’t be normal though. I couldn’t just accept that it was ok, so I scheduled an appointment with a new pediatrician. A new pediatrician meant going over a years worth of history and hoping that she either saw things differently than every other person that had blown us off or not known what to do or that she was 100% sure I was over reacting. She did bone age scans and blood work and decided that we needed to be referred to endocrinology. The appointments for endo are scheduled for two months out. We saw the new pediatrician on Thursday (11/21) she called endo directly and endo got us scheduled for Monday (11/25). My dear God, what is wrong with my baby.
Friday (11/22/2013); Random call from genetics wondering why we never had a biopsy done of the fatty tumor on Lexi’s foot. The doctors had found out that the mass on her foot was a fatty tumor (diagnosed by MRI) and sent us to ortho for a biopsy and x-rays. The orthopedist looked at the x-ray and said he didn’t need to biopsy the tumor. That he was sure it was a non-cancerous fatty tumor and that she had a crazy rare disease, less than 200 known cases, called Maffucci Syndrome. The pediatrician told us that it was very unlikely that she actually had Maffucci Syndrome, that it was more likely that she had hemi-hypertrophy, so, it was dismissed. After I relayed this to the genetics assistant she promptly put me on hold to talk to the genetics doctor himself. The genetics assistant comes back after about 10 minutes. It is Maffucci. What is happening?!? My baby, my sweet little angel, has breasts and a rare disease that causes bone tumors, fatty tumors, rare tumors I have never heard of and diseased bones. The bones in her left arm and leg are shorter than the right and her first tumor of likely many has been on her foot since birth.
Monday (11/25/2013); Our lovely friends Candy and Nathan offered to watch Mark, Sam and Miley so that they didn’t have to spend a day of their Thanksgiving break at more doctors appointments. You, Libby, Dad and I all trekked up to Denver Children’s hospital again to see if the children’s endocrinology specialist could tell us why your little body was already developing. I was a very late bloomer so this is just crazy to me. The endo doctors were so, SO, nice. They see these things all the time and told us that they would see what was causing the pre puberty and stop it. The Dr. asked about the Maffucci Syndrome. We told her what very little we knew about it. She left the room to research and didn’t come back for about an hour. While we sat in the room waiting you and Libby decided to chase each other back and forth across the room about a thousand times. Your sweet giggles fill our hearts with so much joy even in the middle of such a stressful situations. When the doctor returned she had some information for us. In rare cases, your already rare disease can cause a rare tumor she had never even seen before on your ovary. They wanted to do an ultrasound on your ovary’s in case there was that one in a million chance that this rare tumor could be the culprit. We got sent off to go do a bunch of blood panels to look at hormone levels, thyroid levels and for different types of tumor markers and then to radiology for them give you an emergency ultrasound appointment. We went to the lab and had 4 vials of blood drawn then to radiology. You HATED the ultrasound. The gel was cold and I am pretty sure you were done with people prodding at you. I tried to comfort you the best I could and finally got you to sleep so that the tech could get some good pictures of what was going on inside. If you don’t know this about me already Lex, your mom is really nosey and observant. I noticed that the numbers of the measurements of your ovaries didn’t match up and that it appeared that that rare, probably not the likely cause of everything tumor, was looking like it could be a possibility. The tech couldn’t tell us anything so, we wait some more. We left the hospital a little after 5pm and a little after 7pm we got a call. The endo specialist confirmed, it was a tumor and we needed to see an oncologist.
Tuesday (11/26/2013); Oncology called. They could see you tomorrow, the day before Thanksgiving. They had all the tumor specialists that the children’s hospital get together to discuss your case and formulate a plan of action. Grandma, Auntie and Chase flew in that night to spend Thanksgiving with us.
Wednesday (11/27/2013); Grandma offered to watch all your siblings so Daddy and I could take you to the oncologist without any distractions. We got into your appointment and we were blessed with another really nice doctor. She asked your history and about a million other questions. She told us that we needed another MRI. This time of your pelvis and abdomen. That you would need surgery to remove the tumor and possibly your ovary. That the MRI would show them exactly what the best plan for surgery would be. Also, that you may or may not need chemo. That they wouldn’t know for sure until the tumor was removed and tested. The great news was that they would coordinate with another surgeon and get the tumor on your foot removed at the same time so that you could wear shoes! She said to get ready because things were going to start happening really quickly from here on out.
Thursday (11/28/2013); Thanksgiving happened to fall on Daddy and my anniversary this year. We made a huge feast and celebrated properly, surrounded by family and friends.
Friday (11/29/2013); Grandma and Auntie and Chase watched your brothers and sisters so we could head to Denver Children’s again for your MRI. It was a LONG day for us. No food after 8am. No milk after 10am. No juice after 2pm. Check in at 3pm. At 4 they took us back, put a mask over your face and let me hold your sweet hands until you were sleeping. We got kicked out of your room and given a pager and told that they would page us when you were done so we could be there when you woke up. Time passed so slowly. All of the sudden your daddy saw the nurse who said she was going to be there with you the whole time walking through the lobby. Our hearts sunk for a minute until we were told that our pager wasn’t working and that you were ready to see us! We went to recovery where you were waking up. I held you and rocked you and gave you juice as you were waking back up. You were so silly and extra talkative as you were waking up. We sat and rocked until the nurse told us it was ok to take you home. Daddy took us to The Outback for dinner since we were all so hungry. You and I both love the bread and green beans there.
Now, we wait. For results of the MRI, for your surgery to be scheduled, to see where this crazy road leads us. But, no matter what happens, there is one thing you can always be certain of. YOU ARE LOVED. Beyond any fathomable measure, We all love you.
XOXO,
MOM
Dear Lexi 