We hope that posting some of Avery's symptoms and treatment history will help others who are going through the same.....
(this is a non-medical account, if you would like to know about specific treatments/drugs or her doctors, please email us by clicking on contact us)
December 2003 (9 Months Old) – Avery’s first illness. She was diagnosed RSV and treated with a steroid.
January 2004 – During the middle of the month we thought that Avery had contracted RSV again, she had a rattle in her chest and just sounded junky. Her pediatrician put her on another steroid that was given with a breathing treatment. It was about this time that we (knowing now) noticed her first signs that something else was wrong. She had her first vomiting spell, she threw up while we were on vacation. Much to our surprise, it was a vast amount. We figured that she had caught a bug since she didn’t seem to acting out of the ordinary. The other sign was that she tilted her head to the side for the first time. She had fallen asleep in the car during the 3 hour drive to the beach. Her head was over on that side, so naturally we thought she had a creek in her neck.
January 23rd 2004 – Avery began to become a little fussy which was unusual for her. No outward signs of any other problems.
January 24th 2004 – On Saturday she became increasingly fussy and wanted to sleep more than usual. She attended a Toast Masters meeting with her Mommy, she was cranky and cried the entire time. She began to hold her head to the side again. This caused us to be alarmed, but she seemed better after she got home.
January 25th 2004 – On Sunday Avery began to show signs of not feeling well at all. She mainly wanted to sleep and not be held, both of which were unusual for her. She did play a little but mostly slept. Towards the end of the night we noticed that she didn’t want to rollover and play, rather she wanted to play on her back. At that point she became very irritable and didn’t want anything to do with anyone. Still we had no idea what was really happening inside. We put her down to sleep and she slept most of the night as usual.
January 26th 2004 (10 months old to the day) - We decided on Sunday night (1-25) to let her go to bed as long as she seemed to be ok. We knew that she was cranky, but didn’t have any signs of anything else that was wrong. We had a regular appointment with her pediatrician at 8:00 am on the 26th. When we got up we knew something wasn’t right. For the first time she seemed to be in pain of some sort. We took her to the pediatrician’s office first thing. She was alarmed, as were we, that Avery hadn’t been her responsive self. She immediately thought that Avery had spinal meningitis. What shocking words to hear… all I remember hearing the doctor say was that she needed to be sent to the Hospital for a CT scan and a spinal tap. The words spinal tap frightened me. When we arrived at the hospital the doctors came in and immediately examined Avery. The thought of the spinal tap still made me very nervous. The doctor said he would like to do the CT scan first and while we waited on the results, we would do the spinal tap. The CT scan was done first and the doctor immediately returned to the room with the news that they had found “something” in her CT scan. We had to pick ourselves up out of the floor, this just couldn’t be. Only a few days ago our little angel was as happy and content playing at home. They made arrangements to have us moved to Children’s Hospital in Birmingham Alabama, about 1.5 hours from home. I went out of the room to call my Mother-in-law who was on her way down to stay a few days. Upon entering the ER area, I was met by the Chaplin of the hospital. My knees went weak and I could barely stand.. I kept asking him.. Is it that bad? He reassured me that he wasn’t a doctor and that he was here for both us and the staff. I knew then that this wasn’t going to be good.
We proceeded via ambulance to Children’s where we were met by Avery’s soon to be neurosurgeon. He confirmed our greatest fear, she had a brain tumor. At that point he wasn’t very interested in the suspected type, rather his first goal was to relieve the pressure in Avery’s brain that was paralyzing her. I looked at my watch, just 12 hours earlier we were at our pediatrician’s office now she’s on her way to surgery. That night they put a temporary shunt in to relieve the pressure. Upon rolling out of surgery, our little angel started waving to Mommy and Daddy, just like her old self. But we knew there was a long road ahead for us.
January 28th 2004 - The temporary shunt did exactly what it was supposed to, give a few days for the swelling to go down before they tried to remove the tumor. Her first surgery went as planned, but not as expected. About 7 hours into the surgery our neurosurgeon had to stop the surgery. Avery’s heartbeat had become unstable in the process and he was afraid that he was going to lose her. He was successful in removing part of the tumor but found that we had another complication. As he suspected, the tumor had attached itself to the brainstem and could not be totally resected. Upon entering the waiting room, he didn’t have the most optimistic look on his face. He told our crowd of about 25 people that he had to stop the surgery, but he did get enough to send out for pathology to be done. At that point we asked him based on his experience, do you think it was malignant? He very softly said yes, I think it is. What type doc, was next out of mouth of someone. It was like a fog, I couldn’t think straight and then the words that we’ll never forget. I’m not sure at this point, but I think it could be a couple different types… it’s either going to be very bad or very very bad. We all sat in quiet disbelief at what we just heard, our baby has cancer.
January 30th / February 1st 2004– We were obviously going to be there for a while, so we settled into the routine of only getting to see Avery during visiting hours. Now we were bombarded with doctors of different specialties. We took notes and began doing research as fast as we could. The plan for Avery’s treatment took shape pretty fast. We met with a second neurosurgeon that explained a new laser guided process that he had been trained on. He was one of only three neurosurgeons in the country that had completed this type of training. The technology was cutting edge to say the least. The laser guided procedure was helped via the computer that loaded a CT scan of Avery’s head. The computer wouldn’t allow the laser to cut out of the predetermined area based on the CT scan. He assured us that he could get approximately 80-85% of the tumor without putting Avery in danger. We had to make a choice, either try this or watch our baby die without a chance. We opted to give her a fighting chance.
February 4th 2004 - Avery’s second brain surgery in eight days went off without a hitch. As promised, the 8 hour surgery was a success. In fact in the post MRI he estimated that he got about 97% of the tumor. The part that was attached to the brainstem was too risky to try to remove. The second surgery did leave Avery paralyzed on her right side, but we knew that she could be temporarily paralyzed going in. The only thing we didn’t know was just how long that could last, it could have been 3 days, 3 months, or 3 years. We did know that her feeling would come back. Now that we had the surgery behind us, we could start the next phase of her treatment, chemo.
February and March 2004 – Since some of the tumor was still there, we had to act fast. The pathology called it a grade 3 anaplastic ependymoma. A very aggressive type of cancer that wasn’t responsive to chemo, but did react to radiation. The problem was that Avery was too young at 11 months old to have radiation. At the very minimum we had to wait until she turned one. The chemo therapy treatments were very aggressive to try to maintain the cancer and not let it grow. To complicate things Avery’s breathing drive had been damaged either by the surgery or by the tumor itself. It proved to be very difficult to get her off the oxygen and breathing on her own. That included with the normal difficulties of administering seven different chemo drugs while trying to maintain her counts, seemed nearly overwhelming to her doctors. It was a balancing act that was described by one of her doctors as trying to land a plane by the stick without any instrumentation. Luckily between her doctors and Mommy and Daddy (who noticed something), the breathing problems were figured out. The drive that comes from the brainstem was damaged, but we noticed that when we took the oxygen off her numbers actually went up. She was becoming very oxygen dependent and wasn’t breathing deep enough to clear her lungs, and was actually becoming toxic. They tried weaning her off quite quickly to see if her other breathing mechanism would take over and it did. Now with that problem addressed, we were on to trying to strengthen her right side and get her through the first round of chemo. Unfortunately her counts dropped and we weren’t able to get the last drug. Her paralyzation was causing her to have trouble swallowing, so we were having to suction out both her nose and mouth.
After the first round of chemo, we were able to leave the hospital and take her to the apartment that we rented just a few blocks from the hospital. We stayed there while we tried to complete two more rounds of chemo, but her counts dropped too low both times and we weren’t able to get the last drug again. In all, a round of chemo was supposed to last 3 to 4 days, but it was typical to stay a week or longer as her counts would dip. We followed the chemo phase with a follow-up MRI that showed that the tumor hadn’t grown. It did exactly what we wanted it to, hold off the cancer until she turned one.
April 2004 - The start of our radiation phase. First we had to look back and thank God that we had been blessed that she hadn’t had a stroke during her surgeries, that the chemo didn’t cause any hearing loss or kidney damage. Now we looked forward to radiation. First we were told that since she couldn’t swallow, we had to have surgery to put a g-tube in to replace the feeding tube in her nose. Also we were told that since she was going to be put to sleep 31 times for radiation, we would have to have a trach to make sure that she had a good airway. That was a huge setback for us emotionally, but we pressed forward. As we decided that first night, it was truly in His hands and that the best thing that we could do would be treat her like nothing was wrong. Give her more love than ever and not let her see us upset. So we went to surgery and everything went smoothly. After an unexpected week in the hospital, we were off to our first treatment.
May / July 2004 – We continued with 6 weeks of radiation, going Monday through Friday. This part seemed to fly by, now we waited for the MRI that followed after a month off from all treatment. Needless to say this was nerve racking at best, but we got almost the perfect news. The scans came back with no signs of tumors or cancer in her spine, which was a big relief since it was possible for it to spread through her CSF fluid to the spine. The scan of her head was good news, but not what we were hoping for. The scan showed some cells around the brainstem that were abnormal. The doctors were not sure what it was, but they did know that it wasn’t normal. It could be part of the dead tumor, scar tissue from surgery, or cancer. The good news was that it was only a few cells and if they hadn’t known exactly where to look, they would have missed it. Now we had to continue with our weekly checkups and wait for our next MRI in three months.
October 2004 - Our three months had passed and it was time for the next MRI. This one was especially tense. It had been three months since the last MRI and we hadn’t had any treatments. Avery did just fine being sedated and the MRI went off without a hitch. Now we had to wait… Did those cells grow? Did they spread? Did they do nothing? When that door opened and our pediatric oncologist entered, we could tell that she had good news. We really wanted to hear those words, no signs of cancer, but we didn’t. Instead she said no change in the cells by the brainstem. Not exactly what we wanted, but we’ll take it. No other signs of cancer. Given all the possible outcomes, we again thanked God for His blessings. Three more months before our next MRI.
In October, Avery also started feeding clinic to re-teach her how to eat now that some of the feeling was coming back.
November 2004 - Avery continued with her therapy in between her scans. She also started baby sign language to help her communicate.
December 2004 - Avery, with the help of a toy walker, took her first real steps on her own. Now 19 months old, we realized that she would have some balance issues from the tumor and surgery. At this point we were not sure of the extent of the problem.
January 2005 - Again we were due to have another MRI done. And again we still didn’t have any idea what was going on with those abnormal cells. The outward signs showed us that she was making progress, but we didn’t know what was going on inside. Again, we got those same words, no change in her scan. Relieved again, we thanked God as we do every night.
March 2005 - Happy Second Birthday We had a minor setback. Avery caught a respiratory bug that really made it hard for her to breathe. We immediately thought back to how all this started and became very nervous. With her next MRI only a few weeks away, the doctors decided to wait until the scheduled date since she didn’t have any other symptoms. After a week in the hospital, we went home with oxygen and an O2 machine.
April 2005– MRI Month - Again, NO Change… we’re beginning to love those words. Also, after several months of walking with a walker, Avery let it go and started walking on her own. All it took was watching her older cousins doing it on vacation. Also by now she is starting to eat some soft things like yogurt.
July 2005 MRI Month - After a full year without any treatments, we got the same response, no change. Now we decided to change the duration between each MRI from three months to four months. Avery’s eating everything in sight and she’s got a lot of the feeling back in her mouth and face. Her walking has come along very quickly. She still lacks the confidence to go up or down steep slopes or steps without holing on.
October 2005 - We tried, unsuccessfully to get her trach removed. Her breathing was fine during the day, but when she went to sleep, her numbers dipped too low. They had to unplug it and we went home with it still in. We’ll try again around the end of the year. She continues to improve daily. She knows about 50 words in baby sign language and has started saying words even with the trach in. She can say about 10 words that are understandable. We’ve essentially stopped feeding therapy since she is eating and drinking anything that she wants. Her walking is starting to turn into a run, but she still lacks the confidence to just run.
November 2005 - No change, we're still watching those same cells. No activity is still a blessing!! Next MRI is March 28th.
March 2006 - Still no change!! This time our MRI looked different because the Children's Hospital had upgraded their MRI software. We got the best look at these cells yet. For comparison purposes we were looking at apples and oranges, but our doctor was not worried about anything she saw. Our next MRI is July 11th. We have a trach consultation on June 6th and hopefully we'll schedule another removal time shortly after that.
June 2006 - We saw Avery's ENT and have scheduled a trach removal test after her MRI on July 25th.
July 25 - 28 2006- We didn't get good news about Avery's MRI, it appears that her tumor has returned. We're in the process of running tests to determine if it's tumor or possible necrosis from radiation two years ago. More to come.
July - November 2006- Avery's tumor has come back. She completed 26 rounds of radiation and 30 days of chemotherapy.
December 6, 2006- Avery's post treatment MRI showed that the large tumor had a solid hole in it and the rest of it look necrotic (dead). The other small tumor had shrunk even though her doctor didn't radiate it. All in all it's a great report. Avery will complete a maintenance phase of chemo over the next year. Her next MRI should be at the beginning of March.