Dragon Tales, Riding bikes, drawing, Coloring, Hugging, being with her Older Sister and enjoys Water play. Hailey dislikes: Shots, Dressing changes for Broviac, Spiders or any bugs. Hailey is a happy child, even with all she has had to endure. The docs and nurses love her. She is stubborn and loveable, smart, and energetic. She has the most beautiful smile. I tell her she is my angel and she says no, she is just Hailey.
When It All Started
Hailey's symptoms occurred rather fast. This unknown nightmare started shortly before Christmas 1999. She would wake up and cry for no apparent reason. Nothing could calm her down. I use to get annoyed because I was worried about being late for work. Of course, she couldn't tell me that she was having headaches. I thought it was just the "Terrible Twos." We went to Colorado for New Year's Eve and to have a family reunion. I had never met Jason's Aunts and Uncles on his mom's side of the family. (It was a 20-hour drive.) While we were there, Hailey started stumbling when she walked. She previously had several ear infections and we naturally assumed her stumbling and crankiness was due to an ear infection or from being tired from the long trip.
On the return trip, she got really wild and we assumed it was because of those same two reasons. We took her to the doctors and they "confirmed" she had an ear infection. Two weeks later she seemed unimproved and meaner than ever. She started waking up every morning "mad" as she screamed and was uncontrollable. She began to wake up in the middle of the night and cry for several minutes even as we tried to console her. We made another appointment at the hospital and were given a different antibiotic for her ears. At that time, we requested to see an ear specialist and finally were given an appointment. About the third week in January 2000, Hailey began throwing up after her crying fits (yellow looking junk). We thought she was choking on her saliva (from crying so much). On 24 Jan 2000 (Mon), she choked on her lunch at the day care. The director of the day care called and told me she was okay but he wanted to discuss her development with us. Apparently, her providers felt she was behind the other children and had not been herself for the past month. He also mentioned she seemed to stumble when walking. We informed him of the doctor's appointment schedule for the next day and let him know we felt it was all related to her ear problems. He seemed to agree with us and it was decided that if problems continued after the doctors suggested care we would discuss it again. At Hailey's appointment the following day, it was decided she need tubes placed in her ears and the surgery was schedule for 2 Mar 00 (more than a month away). The doctor agreed that her balance could be affected because some of the liquid in her left ear had started to turn into a gel. That same afternoon Jason received a phone call to pick Hailey up from the day care because she had a high fever and had thrown up several times. After picking her up, she vomited twice on the way home. We decided that Jason would stay home with Hailey on Wednesday, 26 Jan 00 (I insert the date because we will NEVER forget it!) because I had too much work to do. I told him to call me and let me know if I should request the next day off. At 1000am, she was doing okay. She had not vomited but her head was tilting to her right. By 1130, he called me back to say she could not stand up without falling and she vomited twice in the last hour. He couldn't get a hold of the ENT doctor so he scheduled an appointment with family practice for 200pm that afternoon. She was stumbling with every step; kept on falling down and holding her head crooked. (Her head had been slightly tilted lately on numerous occasions and we thought she was just being cute, concentrating on something.) He was just going to try and get her surgery moved up as soon as possible. By 400pm, I had not heard from him and I began to worry as my mother's intuition kicked into high gear. I called the house with no answer and thought it was strange that they were still at the hospital after two hours. My co-workers told me to relax because the hospital was probably just very busy. I went to my scheduled staff meeting and within minutes a co-worker came to get me. Jason had called to say that the doctors didn't really know what was wrong with Hailey and I needed to get to the hospital. They were going to admit her to the Pediatric Ward. We had both thought maybe she had vertigo from her ear infection and may have been a little dehydrated. I picked Ashley up from the day care and headed over to the hospital. When I arrived, I immediately felt something was wrong. There were several doctors and nurses surrounding us and they were being friendlier than normal. As I walked in, a nurse took Ashley to the playroom so I could answer some questions for the doctors. I was quite shocked at how she was holding her head but had no idea what was wrong. One doctor informed me that they wanted to do a CAT scan and I was needed to try to keep her calm so she would remain still. I went in the room with Hailey as they performed the CAT scan. Jason watched the results print out and saw with his own eyes a clump of abnormal looking white material. We headed back to the Pediatric Ward. On the way, Jason told me Hailey had thrown up all afternoon especially with any movement. The group led Jason and I into the conference room and had us take a seat. I was still holding Hailey in my arms as the doctor stated that he didn't want to beat around the bush. Hailey had a brain tumor. I immediately started crying and was confused. I held her so tight and she didn't understand why her mommy was crying and who all these people were. I began to wonder what they where trying to tell me. Was my baby was going to die? I knew nothing about brain tumors and had no idea what to expect. After they briefly spoke with us (We don't remember much of what was said and had they warned us that shock would probably do that to us.), it was time to take care of Hailey. The first thing that was done was an IV inserted so she could receive a steroid (Decahedron) to reduce the swelling of her brain. They did explain that the tumor could block the path that allowed fluids to enter or leave the brain. This in turn causes swelling, which caused the painful headaches she had been having (the early morning tantrums). The doctors we spoke to were fairly confident that they could perform the surgery for removal of her tumor but by the next day, they decided it was best for Hailey to go to the University of California in San Francisco. Since they had planned to do an MRI, she wasn't allowed to eat Wednesday or Thursday. The MRI was postponed until Friday morning and was done under sedation. They had to stop prior to completing the procedure. Her heart rate had dropped down to the low 30s and they had to reverse the sedation. After receiving this information along with the results of the MRI, her doctor felt it in her best interest to perform the surgery that night (Friday, 28 Jan 00). The MRI showed the tumor to be larger than they originally anticipated. They felt since the tumor was either pressing against her brain stem or attached to it and could prevent the brain stem from performing properly, she had a high chance of dying before the weekend was over. They also thought the tumor was attached to a nerve that controlled the right side of her body. We were informed of all the possible side affects but Jason and I, we knew right away that our only choice (Hailey's only chance) was to go through with the surgery immediately. We called our family and friends to let them know the status and to ask for their prayers. (Ashley was staying with a friend and it was difficult for her. She had to be separated from us without really understanding what was happening to her little sister.) The surgery started at 7:30pm and was approximately seven hours long. They shaved half of her hair off. Even though we were prepared for this, you can't explain the shock of seeing your little girl half bald, with stitches covering her head from nearly top to bottom. But the relief that she had survived the dangerous surgery was overwhelming!! They removed the entire tumor without causing much damaged. (There are always cancerous cells remaining behind that need to be treated with Chemotherapy and radiation.) She had a slight drop on her mouth and eyelid on the right side of her face for a month or so. She was drooling a little bit and her balance is still slightly off. That week in the hospital was hell. She wasn't herself and screamed almost constantly Thursday through Sunday. Not even I, as her mother could calm her down. She didn't really know who she was or where she was. But by Monday, they released from intensive care and she was eating normally (except for one vomiting episode on Tuesday). On Wednesday, she was released from the hospital. Friday, the tumor board reviewed Hailey's case. The results of the biopsy confirmed that her tumor was Medulloblastoma (a malignant brain tumor that is very reoccurring). We met with her doctors and started discussing her treatment plan. The following week surgery was performed to insert her Broviac (This is an IV line connecting the main vein from her neck to her heart. It is used until treatment is done for providing her with any medications or fluids needed during her care as well as for taking blood for lab tests. The procedure is to prevent sticking a child with a needle every time medication or lab work is needed. Also Chemo patients tend to have very little veins available for IV sticks. The Broviac must be cleaned daily with Saline and Heparin to preventing clotting and possible infections. The dressing surrounding the Broviac must also be changed every three days or anytime it gets wet. In the beginning, Hailey had a bone scan, bone marrow, and MRI to check for possible spreading of the cancer cells. She also had a kidney test, and hearing test to establish base lines because those are some of the body organs that can be affected by the Chemo. She started her first course of Chemo on 28 Feb 00. She is supposed to have a total of five courses for 21 days each and then start radiation at the tender age of three. She was very sick during her first dosage and didn't want to eat for a few days afterwards. As of the last couple of days, she has been able to hold liquids down. Her Chemotherapy consist of Vincristine, Cisplatin, Cyclophosphamide, VP-16, Mesna, & G-CSF. She already has a yeast infection from the steroids she finished on 24 Feb 00, a bacterial infection on her butt and an infection at the entrance of her Broviac. The doctors said she did okay for the first course and we can expect worse. They had doubled looped her Broviac and stitched it to her skin in two extra spots besides the entrance of the tubing. She is a strong child and hates dressing changes (which we had to do everyday last week because of the infection). She pulled out two extra stitches already. It takes four of us to change her dressing even though she is given medication to calm her. Versed (a medication for calming) actually has the opposite affect on her and makes her mean and mad. She is so innocent and sweet! She doesn't even realize she is sick. Her sister is worried about her and has a hard time with Hailey "getting" all of the attention. We have no family in the area and our local friends treat us different. They kind of have drifted off already. I get so stressed and depressed...I'm taking Prozac and trying to keep strong/calm for my family. Its been a long time since this base has had someone so young with cancer so I don't feel like we have much support. The one good thing is that the military pays for all of her medical expenses off-base and most of the expenses on-base. We have to pay $10.85 for each day she stays in the hospital on base. It doesn't sound like much and it's definitely cheaper than the civilian community but it has already started to add up![Top of Page]