My daughter, Beth, was a"normal" 10 year old. I say that with a proud smile on my face, because she was more than an average kid: all A's, a gymnast, english horseback jumper, yearbook committee, choir, tons of friends, beautiful - we just knew she was going to set the world on fire.
She had always battled headaches-since about age 5. All the doctors I took her to, said she was "prepuberty" "had migranes" "watch her diet (too much fast food)" "flu season" By age 10, she was getting weekly headaches and they were getting increasingly bad. She was popping motrin like candy. After several trips to the emergency room, one doctor finally ordered an MRI (I didnt know what to ask for- a CT scan I demanded in the earlier didnt show the tumor). So, who knows how long she had the tumor- but I certainly think it was longer than a couple months.
So, the day our world changed was Dec 17, 2002. I knew something was wrong-my mother instinct had told me it for months- but it was still devastating news for our whole family. Beth was rushed to Children's Hospital, Detroit, MI- where the neurosurgeon performed complete resection of the tumor. She endured a later surgery: third ventriculostomy instead of a shunt and went through radiation and chemotherapy (vincristine, ccnu, cisplantin). Some of the chemo's were cut back due to her severe nausea and constipation. It was a rough time. She missed almost all of 4th & 5th grade.
She was angry. We were sad. It was a very dark time through the treatments. At one point, the hospital "misread" or "overread" an MRI and told us the cancer was back in her spine. We were tired and devestated. Only by listening to advice of other medullo parents we met online, did we send out MRI's to other hospitals who confirmed it was not recurrence, simply changes from radiation. So we lost some faith in our hospital and doctors and learned to question everything and research more. We get second opinions on all MRI's now.
Happy news now! Beth has been off treatment 17 months today. She is a thriving 12 year old. She has gained all her weight back, is back to horseback riding, bike riding...life is "normal" again. She made it through 6th grade with all A's & B's-she is shy now and has to work hard at getting good grades. One of her eye lids is slightly weaker (nerve damage from the surgery) but otherwise you would never know she had cancer. Now she is on daily growth hormone shots because the radiation effected her pituitary gland. So she will be short, but at least she is here.
Life has changed for us, but especially her. Our dreams of her someday having children herself are probably not. Our dreams of her attending an Ivy League College are probably not realistic anymore, but we try to focus on staying positive that she is still with us. Beth is such a blessing in our life. We chronicled all the events on her website bethsplace.net if you care to check it out.
Prayers to all of you fighting this horrible tumor.