Our story

This is our story.

Sophie (picture attached) is 9 now. She's the only daughter to me, a single mom, and we have a very close relationship. She IS my heart, and I never expected to have to deal with a diagnosis like this. No mom ever does, I don't think. She was born a little bit early, but other than that has had a pretty normal and healthy life. Until last fall.

She had a weird bump come up on her scalp that we saw a dermatologist for back before thanksgiving. It would NOT go away and was growing quickly. Amid our frustration, we were told it was everything from a swollen gland due to dandruff to a Lipoma and ultimately, we were sent to a head and neck surgeon after the dermatologist attempted to biopsy it and noticed some abnormality in its content. He also said that it couldn't completely be removed in his office because it was SO deep... Early the next week she was seen by a head and neck surgeon and the surgery was scheduled.

We woke up very early (this was January, 28 2011) and went to the surgery center. Sophie was in good spirits and was put under general anesthesia for the surgery. An hour went by… the doctor said it shouldn't take more than an hour… and then an hour and a half… and the surgeon came out with her arms folded and a teary-eyed look on her face. She said that there was a tumor deep below the surface and that there was a weird "film" underlying the tumor. She said that she did two biopsies and that she sent them both off for pathology. She said that Sophie did really well and was in recovery. She also said that she'd never seen anything like this in the 20+ years of her practice.

The following week, Sophie was ill. She felt really tired and run down and we spent the Saturday after surgery at Memorial Hermann ER because she was having an allergic reaction to one of the medicines they had given her in recovery. Then, they gave her steroids and IV antibiotic and she did terrific. Her energy level went back up, so we were sent home that evening. They sent her home and Sunday she was a little better, but took a VERY long nap that afternoon. She felt terrible… So, Monday morning, I called the head and neck surgeon and we went back in to see her. She explained that this was Histiocytosis – X and it was distinctly positive on biopsy. It had eaten through the skull. She referred us to Texas Children's Cancer Center, so we got scheduled. She said that she had already notified the pediatrician and they were on the same page. When we went home the next day, Sophie continued to have symptoms, so I took her over to TCH where they did a skeletal survey to look for more lesions and told us to keep our appointment for later that week. The doctors in the ER had at least heard of Histio, but they didn't know how to treat it without calling the experts. They were very compassionate and kept Sophie comfortable but we were there ALL day. I will never forget how hot and flushed she looked…

Sophie got in to see the fine doctors at Texas Children's who are leaders in this disease. They first recommended chemotherapy and steroids for a minimum of one year. They did many scans on her, and to our surprise, there was no increase in disease in her system and the tumor that remains in her skull (the surgeon had only partially biopsied it back in January) has not continued to grow. They surprised us at her second clinic appointment by saying, still no chemo was needed. I can't tell you the relief we felt! Sophie is a best case scenario for the time being. She is being followed monthly on a "watchful waiting" program by her oncologist. We will have to go to TCH once a month for the next year, and our visits will take 1-3 days depending on the CT's, MRI's, lab work and PETScans he wants to order. Poor thing feels like a pin cushion... I pray to God every day with Sophie that the Histiocytosis (hers is the LCH variety) would just go away somehow.

So the last several months have been pretty much surprising to us in a million different ways. It's a total roller coaster of uncertainty. I wake up every day saying, Okay… What's NEXT? What does today hold? And, although we have had to adjust to a "new normal", we do realize it could be MUCH worse. I hate having to miss work, I do like my job and my coworkers have been amazing. I am desperate to find a cure, but powerless to do so. I am financially strapped because the other item that I should mention, is that I have a little boy whose been sick his entire life, and is only now starting to feel better and see some "healthy" in his life. He was born at 30 weeks and has Epilepsy, Cerebral Palsy, Kidney, Blood Pressure issues as well as Hypergammaglobulenemia of Prematurity (Immune Disorder). I am thankful that, for the most part, he's healthy, but I have often asked myself  "Why HER?", and "Why THEM?", and "Why US". They're just such amazing little kiddos. Both tenderhearted, kind, innocent and sweet.

Please do what you can to help Histiocytosis research! With a cure, and better information distributed to doctors, the better off these kids and adults will be. Why support Histiocytosis over other diseases? Because right now there is NO government funding for this disease. And though most often, it's treated in Cancer/Hematology Clinics but it's not called "Cancer" because it's a hybrid disorder that is half immune disease/half cancer. And, medical students don't study Histiocytic disorders much at all because it only affects approximately 1/250,000 kids and 1/650,000 adults annually. It's called an "orphan disease" because there is so little known about it. And, families of patients can't get the help they need if they fall above the poverty line because they make "too much money" for government help, but their child doesn't have "Cancer" so they can't get private assistance either. It's a frustrating roller coaster ride and we really need people like you to step up and help.

Please do what you can to help!

 I wrote this article for a friend of mine that is showing it to a member of our government next week. Please pray that it goes well.

God bless!

J