12/14/2013
Dear Lexi,
Wow. What a week! We got home from the hospital on Monday. We were so thrilled that everything was going so well. We couldn’t believe that you were ready to come home so quickly. On Tuesday morning I woke up and told Daddy that I was going to take a long relaxing bath. I needed it after the stressful week before. I ran my bath, turned on the jets, just got comfortable and Daddy came crashing into the bathroom. He didn’t say anything, just showed me a bloody wipe. “???!?!?!?!?!?!?!?!?!??????!!!!” All I remember saying is, “Is that period blood?!?” So much for some downtime. I grabbed my phone off the counter, sent Dad down for your discharge paperwork and started making phone calls.
First call, pediatric surgery. The paperwork said call there if anything was wrong. There phone system said to leave a detailed message and we would get a return call in 1-2 hours. I was not ok with waiting around for that long to find out if we would have to make the 1 1/2 hour drive back to Denver. Next call, endocrinology. Dr. Simmons is amazing and always promptly returns calls if she is able. I told her nurse what was going on. Dr. Simmons returned the call in about 2 minutes.
We were told that it was, in fact, “a real, normal period”. I didn’t start my, “real, normal period” until I was 16 YEARS old. I don’t understand how a period at 15 months could fall into any realm of, “normal”. I mean it medically makes sense. Your tumor was causing super elevated hormone levels to pump through your system. Once the hormones stop, your body flushes out your system. We think, hope, pray, that this will be the only period that you have until you are a happy, healthy teenager. If it happens again next month Dr. Simmons will re-evaluate.
Wednesday was a good day! We were supposed to get pathology results today but didn’t. You are so happy that you and Libby are reunited. It is so sweet how much you guys genuinely care about each other. You kiss and hug each other on your own. You really are best-friends. The pain seemed to be manageable. If we spaced the pain killers farther than 6 hours you started to get fussy, but that is expected. Your incision site looked really great and you had very minor swelling between the incision and your belly button.
Thursday we woke up and your swelling had become far worse. It looked like someone cut a mandarin orange in half and implanted it in your lower abdomen. Daddy and I weren’t sure if it was swelling or a hernia. We decided to call the surgery nurse on call and they scheduled you in your surgeons next clinic day appointment, next Wednesday. The nurse told us to keep an eye on it in case it got worse, looked infected or you got a fever.
On Friday morning the swelling was worse. We did not want to pull Mark, Sam and Miley out of school for another appointment so we decided that it was best to get an appointment with Dr. Tullberg, your pediatrician here at Ft. Carson. We trust her and know if she had the slightest concern that she would send us to Denver. At your appointment Dr. Tullberg confirmed that it was just swelling. She told us again to keep an eye out for swelling and she refilled your pain medication because it was obvious your would run out before your pain was manageable without it. When we got home we got a call from Denver. Your pathology results were in. Turns out that the tumor that they removed is a very rare tumor. Even more rare when your age is considered. It is called a juvenile granulosa tumor. It is considered a malignant tumor. Thankfully, the tumor was caught early enough that the cancer did not spread anywhere else. They got it all! You don’t need any chemo or radiation! The pathology showed chronic inflammation on the lymph nodes, but everything else they tested was completely normal! Praise the lord that you get to keep your crazy Kramer hair! I know that is insanely superficial. You would have been the most beautiful bald baby in the universe if you had needed chemo, but I am so elated that you don’t. In other news, Grandpa had surgery today to remove a tumor from his neck. Everything went really well for him too.
Today we woke up to a fever, swelling and a REALLY fussy little girl. It could have been partially the fact that you actually slept for longer than 4 hours for the first time in over a week. We gave you your medicine and the fever went right down. All day you have been super cranky and emotional, maybe because you are on your period, maybe because your in pain, maybe because you are just having a bad day. All I know is that I will love your cranky, now cancer free(!!!) self, every second of every day. I know we have many ups and downs ahead of us, but I am happy that I get to be there with you through it all. You are such a blessing Lexi. I love you to the moon and back a million times, to infinity and beyond, infinity times infinity.
XOXO,
Mom
P.S. You Loved the sausage and cream cheese wontons we made for dinner!
Dear Lexi 