If you are a reader of this blog, you may be wondering why there have been no posts for the past week. Life seemed to stop for the last several days, as my 13 year old daughter has been diagnosed with a brain tumor.
UPDATE AS OF MAY 17: Her biopsy is cancerous, they think a grade 3, which is aggressive. They will find out the specifics in a few more days when the specifics of the biopsy comes in. Today we saw the neurosurgeon, the oncologist, radiation doctor and she had another MRI. We will start chemo & radiation treatments probably next week or the week after.
My daughter had been experiencing occasional headaches and a few episodes of nausea for the last few months. I have a heart condition called Mitral Valve Prolapse, that I have lived with since I was in my 20’s. She said she was having some of the symptoms I experience, so I took her to my MVP/Dysautonomia doctor to be tested. She was diagnosed with Dysautonomia, which is a fluctuation of blood pressure and heart rate. Her doctor wanted to try regulating her condition with a special diet. One of the symptoms of Dysautonomia is headaches due to the fluctuation of blood pressure, so her continued headaches was what I thought was normal.
About 3 weeks ago, she woke up with a bad headache and nausea that would not subside with over the counter medicine. I called her Dysautonomia doctor and she suggested I take her to the local ER. They treated her for the migraine and sent us home. Her Dysautonomia doctor prescribed her a medication and said she would refer her to a neurologist to check her out just in case. I had an intuition that she needed to have a scan of her head just in case. Her recent bad headaches had been at the back of her head at the base of her skull. The doctor asked us in the hospital if she was experiencing trembling or difficulty of learning at school and we said yes to both questions. She is normally an A & B student and most of this year she was making C’s and a couple of D’s. She was feeling overwhelmed with her schoolwork. For this past few months her hands would shake anytime she would pick up something. Also, she became uninterested in doing some things like going to movies and going out with friends. Her sleeping habits changed too. She was having trouble falling asleep and then would sleep until mid morning.
The time had come for us to leave on our vacation, but I was reluctant to go, since it is about 12 hour drive. She was so excited about going. My husband said if anything should happen while we are there, we could take her to a hospital there.
Our first day at Disney, we went to the Magic Kingdom. We rode the first ride of the day, Big Thunder Mountain Railroad roller coaster. When we finished the ride, my daughter complained that she was lightheaded, her head hurt in the back, like it had been before and she got sick. A few Magic Kingdom staff members helped us and one drove us back to the resort. They were wonderful and very accommodating! She took some headache medicine, we stayed in the resort room and she felt a bit better that evening. The next morning she woke up again with a headache and continued to be sick. Her nausea started to subside after I gave her her prescribed nausea medicine. We decided to pack our things, leave and go home. When we started on the road, she got worse. Her head was hurting so bad that we went to Dr P Phillips Hospital close by and checked her into the ER. The ER doctor ordered her an IV and a CT scan.
They found a mass in my daughter’s brain. When the doctor told me, I instantly felt the blood rush from my head. I had to sit down. I will never forget that feeling of total shock. I would never have imagined that’s what was wrong with her. The doctor came in and explained that it may be a tumor but he said an MRI would determine that. He suggested sending her to Arnold Palmer Children’s Hospital about 15 minutes away. She was transported there within the hour.
The neurologist did an MRI of her head and one of her spine. Her spine was clear, which was good! He said it was a brain tumor, but that they would need to a biopsy to find out what type. Once again, fear and anxiety took over on the inside, but on the outside I remained calm for my daughter. The doctor explained that her tumor was in the left ventricle in the center of her brain. He said most likely it has not spread and is contained in the ventricle, which was good, but it has blocked the spinal fluid from circulating in the ventricle, which is called Hydrocephalus. He said she needed to have a biopsy performed to determine the type of tumor and a procedure to drain the blocked spinal fluid. He said the first choice of the Hydrocephalus procedure would be to cut a slit in the curtain dividing the ventricles to allow the blocked spinal fluid to circulate. If there was difficulty in performing the first choice procedure, then he would insert a shunt with a tube coming out to drain the fluid. Thank goodness the first choice procedure worked, so there is no tube! She did well throughout the procedure and there was no bleeding. She went back to her room after recovery and stayed overnight. The next day after surgery she was moved to a regular room! They took her off the IV and the monitors. She was still a bit groggy and tired, but she had no headache nor nausea.
Yesterday, the doctor released her since she was doing well, 2 days after brain surgery! He gave a steroid medication to take every 6 hours, even during the night, and a medication to control the reflux from the steroids. I’m glad to say she’s at home resting and watching super hero movies! She has to be careful about turning her head, since it is sore and she’s slowly gaining her strength back from being sick and in the hospital. The good Lord has watched after her and Praise the Lord she is doing ok!
She still has the tumor and she is taking rounds of steroids so that it restricts it from growing. Our follow up appointment with the neurologist is Thursday, May 17. We will find out the results of the biopsy, if it is benign or malignant. I’m praying it is benign. They will set up her chemotherapy and/or radiation treatments to shrink the tumor. Then, after a few months, she will have surgery to remove the tumor.
I never would have imagined this would happen to her. She is my only child. I don’t have brothers or sisters and only have a few family members who are all older than me. My Mom passed 3 years ago and to have this happen has been a bit difficult to digest. I have learned through a few difficult times in my life is to always think POSITIVE. We are not giving up, as I have heard of children who have been cured from brain tumors!
Thinking positive will help you get through even the most difficult situations. For the past week, I have had doubtful thoughts like, “she may have a hard time going through the treatments”, “she may want to give up”, and even, “she may die”. You name it, I have thought it. And with each of those thoughts comes fear, anxiety and times of crying. But, I am trusting in the Lord, that He will make her pull through this. I have told my daughter twice the last couple of days, that she needs to focus on the POSITIVE and don’t think negative thoughts. There is much hope and that hope will get us through this!
When we allow negativity to overwhelm us, it can consume us. If we focus on the Positive, we feel better, can cope much better and each day will be better.
In times like these, you open your eyes and are reminded that Life Is Precious. Often, we go about day to day, going to work, getting caught up in…Life itself. But, when things like this happen, it makes you slow down and enjoy the little things in life and the ones you love.
If you are wondering if I’ll continue to publish blog posts on capsule wardrobes on publish my Capsule Wardrobe eBooks, yes absolutely I will!
In troubled times, it is so important to continue working, enjoying hobbies and just…keep busy. It keeps us going, helps us cope with difficult times and gives a sense of “normalcy”.
Each season I have published 6 capsule wardrobe eBooks. Because some of my time will be taken in caring for my daughter and taking her to appointments, I will only publish 4 eBooks this Summer: The Essential, French Minimalist, Workwear and the Stay At Home Mom. The Athleisure and Menswear eBooks will hopefully resume in the Fall 2018 season. Thank you for your understanding.