"If he isn't a perfect Apgar, I don't know who is!" These were the words of my doctor within minutes after my very healthy son was born. Ethan latched on and nursed soon after birth and thrived for the first 5 months of his life. I eagerly compared his development with his older brother's by comparing journal entries. It was interesting to see how closely aligned they were in their early development, reaching the same milestones within a week of each other.

When Ethan was 5 months old he got a bad case of bronchitis. In spite of frequent coughing fits he was still a very happy baby. After a couple of weeks he started throwing up, usually after the nighttime feeding. He was still fine during the day so we were happy to accept our doctor's reassurances that there was nothing major wrong. He suggested we eliminate the night feeding, which we did. Then Ethan started vomiting during the day as well but only after nursing. He could drink breast milk from a bottle without any problem so I tried changing positions. I also expressed more milk and nursed less.

Before long Ethan was vomiting after almost every feeding. At the doctor's suggestion I started cutting down on the length of time I'd let Ethan nurse. That helped a bit but he was losing weight and we were getting worried. We were also getting frustrated because the doctor didn't seem to believe us when we said that Ethan was throwing up entire feedings. By this time Ethan was retching so hard that he was also bringing up bile. Still, the doctor would prescribe a medication for reflux, tell us that it should work within 3-4 days and then tell us to give it another week when we returned, reporting no improvement in Ethan's condition. The doctor's first diagnosis was "non-specific virus" and then "failure to thrive." We saw one of his partners for once who ordered a chest x-ray to make sure there was no blockage. Everything looked fine. Our doctor ordered a barium swallow study and again, saw no anatomical explanation for Ethan's continued vomiting.

I looked at the video of his older brother at 6 months of age and was shocked to see that he was easily turning over and sitting up in his crib. When Ethan went in for his 6-month doctor visit he was thin, weak and unable to do more than lean against me. I told the doctor about the vast difference in development between my two sons (and that they had been in tune for the first 4 months) and he said that Ben was really advanced for his age and that Ethan was sick and therefore not interested in doing the things that Ben could do. We continued to "give it more time" for another couple of weeks. The doctor was going out of town to a conference for 10 days or so and made an appointment for us to sit down and talk about our options if Ethan had shown no improvement in that time. We didn't wait for him to come back but instead took Ethan to see another of the doctor's partners. She took one look at him, ran him through a simple neurological exam and told us that she wanted to admit him to the hospital immediately to be rehydrated and then she'd decide which specialist to refer us to. It was very clear to her that Ethan's illness was not something that she would be able to treat.

I felt a great relief when we left for the hospital. I hadn't realized just how frustrated I had become with our doctor. To have someone jump in and take action took a huge load off of my shoulders. Finally I felt as though we were going to get some help.

The next day Ethan and I took the 100 mile trip to Rochester by ambulance. When we arrived at Strong Memorial Hospital we were greeted by many doctors and residents and everything happened very quickly. First, the head of the neurology department gave Ethan some simple tests to check the reflexes on the bottoms of his feet and watch his eyes as he tracked a shiny object moving from one side to the other. He lifted Ethan by his hands and pointed out how his head fell back.Ethan had lost the ability that he had once had to hold his head up. He was sent down for a CT scan of his brain.

I was very distraught that we were not allowed to stay with Ethan while he got the scan. He was in there for a long time and I felt as though I was suffocating the whole time. When we finally returned to his room we were soon joined by a lot of doctors and residents. They showed us the scans and pointed out that Ethan's ventricles were quite enlarged. That accounted for the lethargy. They also showed us a large, grey area and referred to it as "a mass." I think they knew that the word "tumor" would be too difficult to hear. Before we could grasp what was happening Ethan was scheduled for emergency surgery.

Ethan's tumor was an ependymoma and it took up most of the posterior fossa of his brain. It was embedded in the brainstem and so the surgeons were not able to remove the entire tumor. Doing so probably would have cost him his life as the brainstem controls breathing and heart rate. The tumor was located near the "vomit control center" of the brain. That explains the vomiting. Gross motor skills are also controlled from this region of the brain and that explains why he was no longer able to sit up or hold his head up.

We stayed in the hospital for a month that first time. Ethan needed additional surgery for a shunt to drain excess fluid from his brain and also to put in a central venous catheter for his chemotherapy.

The struggle to feed Ethan continued. The vomiting decreased somewhat once the pressure was relieved from his brain but he was still not able to nurse for very long and was starting to show an aversion to food. He continued to lose weight. Over the course of a few months he went from being a chubby 18 1/2 pound healthy baby to a bony, weak 13 1/2 pounder. I knew it was ridiculous to blame myself but I felt like a failure as a mother because I couldn't do the most natural thing in the world: feed my baby. I wanted to make sure that my pride didn't get in the way of getting nutrition into his body so we started demanding action to help him out. (We resolved never to be complacent again when it comes to our children's care. We learned how to speak up and demand answers.) We started with NG tube feeding. I even learned how to thread the tube through his nose and check to make sure that the end was in his stomach. That method of feeding was marginally successful but the vomiting continued. Meanwhile I continued to try to breastfeed but my milk was drying up and Ethan was resisting all attempts to feed him. After some weeks of this, we reluctantly, and yet gratefully, put Ethan on TPN. Now he would get the nutrition that he needed pumped directly into his veins. We decided to give him a complete break from oral feeding to give his gut a rest.

During this time he was also starting his chemotherapy. Since vomiting was a constant problem anyway it's tough to say that chemo was particularly hard on him. If anything he vomited a bit less while on the chemo anti-emetic drugs. We tried these drugs when he wasn't on chemo but they had no effect on tumor-induced vomiting. We had a bit of a respite from crises and only had what we referred to as "routine emergencies," checking into the hospital for fever and neutropenia. Ethan had some happy times for a little while and we amazed ourselves at our ability to learn countless new nursing skills.

After 3 months, it was clear that the chemo wasn't doing any good. Ethan's condition was worsening. He was admitted to the hospital when he was neutropenic and was treated for 4 separate types of bacterial infections. While at the hospital he contracted rotovirus and had severe diarrhea for many days. He started having these weird movements that no one could explain. It looked as though he was writhing in pain. We could no longer hold him and comfort him because the movements got stronger when we made the attempt and seemed to make him even more distraught. He was given morphine which seemed to help the first time but after that had no effect. His only relief came when he was sedated. He had an EEG that proved that these movements were not seizures. Our neurologist didn't believe that he was feeling pain since the morphine had had no effect. An MRI scan showed that there was a large cyst coming out of the top of his tumor, pressing against the thalamus. This was probably the cause of the movements. Our surgeon didn't feel comfortable operating on Ethan again. He'd had some problems during the first surgery and didn't think that Ethan would survive another surgery. Our pediatrician counseled us to keep Ethan sedated and let him go. This was by far the blackest period of this whole ordeal.

Our oncologist offered a small ray of hope. She had consulted with a pediatric neurosurgeon in Buffalo who had agreed to see Ethan. Ethan and I took another ambulance ride and met Tim who actually beat us there in his truck. I was surprised by how slowly the ambulance drove--no sirens and we went no faster than the speed limit.

Dr. Veetai Li (in Buffalo) felt as though he could perform the surgery to drain the cyst and relieve the pressure. While he was in there, he would also attempt to resect more of the tumor. He also said that doing nothing was a viable option since there was no guarantee that the cyst wouldn't come back. We could be right back where we were now in two weeks having put Ethan through major surgery for nothing. After many tears, prayers and consultation with our oncologist we decided that we had to at least try because Ethan would surely die if we did nothing.

The surgery was successful in that it did drain the cyst but Dr. Li was not able to get much more of the tumor. Ethan had had a reaction to a blood product and his blood pressure went way up. They had to stop the surgery to wait for it to return to normal. Then, they had trouble maintaining the oxygen saturation in his blood and so decided to stop the surgery.

We were relieved that Ethan had survived the surgery but still doubted that he would live long. Then we met Dr. Patricia Duffner. With the pressure off of Ethan's brain the movements had stopped but he was still dreadfully thin, pale and weak, with deep circles around his eyes. Dr. Duffner is a pediatric neuro-oncologist. She got Ethan's history and saw his scans. When she learned that the tumor had not progressed since the first surgery she was very upbeat. She said "This kid looks great!" She almost convinced us that since the tumor hadn't gotten bigger and hadn't metastasized that Ethan did indeed have a chance for recovery. She told us of kids that she had seen who had bounced back when there seemed to be no hope of recovery. She gave us that hope! She recommended revising our chemo regimen and stick exclusively to Cisplatinum and VP-16. Those seemed to have the best effect against ependymomas.

Ethan did indeed recover from that period. He started putting on weight and very slowly started to get stronger. We kept with the cisplatinum/VP-16 regimen until the Cisplat started causing too much hearing loss. He had been tested regularly for hearing and when the loss in one ear started getting down into the speech frequencies we were counseled to switch to carboplatinum. As expected that was much harder on Ethan's blood and it took progressively longer for his counts to recover. Finally, after 10 months on chemotherapy we decided to move on to radiation therapy because it was taking too long between cycles for the blood to recover sufficiently for the next chemo dose.

We didn't make this decision lightly. Ethan was still quite young but it was clear that chemo alone wouldn't keep the tumor at bay until he was deemed old enough (3 years) for radiation. Tim spent many hours reading up on radiation. He consulted with doctors around the country and asked countless intelligent questions on the subject. When the radiation oncologist presented his first plan, Tim was not satisfied. It consisted of one pair of oppositely directed beams shaped to the outline of the tumor. Due to the tumor's irregular shape, a lot of normal brain tissue would have gotten 100% of the dose, as would his ears. We said we would need a second opinion. This was another tense situation as this doctor didn't take lightly to being challenged by parents of his patients. Fortunately the medical physicist listened to us, and she came up with a design for 2 pairs of oppositely directed beams (crossing like railroad tracks) which dramatically reduced the dosage to ears and normal brain tissue. This plan pleased everyone. Long term effects are likely to be minimal or undetectable.

For seven weeks, we drove four hours a day/ five days a week for Ethan's treatments. He felt pretty good throughout most of this treatment phase. He was only 19 months old when he started his radiation treatments but soon learned the routine and went willingly to the therapist when it was time to leave us. He did not need to be sedated and learned that they would leave the room four times. He laid still in his restraining suit until they started back into the room after the fourth time. Then, he knew that the treatment was over and was trying to take off his face mask.

During the last couple of weeks of RT Ethan's vomiting increased. It hadn't fully stopped during the past 15 months but now he was vomiting up to a dozen times a day. Soon after RT was complete Ethan's condition took a nosedive. One morning he was sitting on the floor rolling a ball back and forth with his dad and by that evening he was unable to sit or even to hold his head steady.

The radiation had caused swelling in his brain and the cysts were enlarging. At first the problem seemed to be a non-tumor cyst at the base of his brain. We were actually somewhat relieved when we learned that because there was already a shunt to that location. We figured that the shunt had failed and that it would be a simple operation to replace or repair it. (We'd been through three shunt operations already and they were easier to get through than craniotomies.) The doctors wanted to wait to see how it would all play out. For one thing, tests showed that the shunt was still functioning normally. For another, they figured that the swelling activity hadn't settled down yet and shunting off one cyst would not solve the problem as others were bound to form. Our surgeon also was reluctant to operate so soon after radiation as recovery would be slower and the risk of infection would be greater.

This was an extremely frustrating period for us because Ethan almost instantly lost all of the motor skills that he'd been working so hard to gain. Once again, he had to either be lying down or else in constant physical contact with one of us. To play, he'd sit between our legs on the floor while we supported his hips with our legs, his body with our body and his head with our hand. We held his head steady by pressing down lightly on the top of his head. The other hand was free for offering him toys. Physical therapy had to begin all over again.

This continued for over 2 months. Finally, in early July of '97 the surgeon's hand was forced. The ventricles were getting larger and the VP shunt was failing. He decided to replace it with a different style of shunt. He also connected the VP shunt with the lower shunt in an attempt to have them both function more efficiently. Ethan recovered quickly from this surgery.

It has been nearly 11 months since that surgery and (knock on wood), we haven't had any crises since. Ethan was able to respond to the physical therapy more quickly the second time around and is now able to stand up holding onto furniture or people for support and is learning how to use a special walker. The expectation is that he will be able to walk someday on his own.

Eating continues to be a problem. We switched from TPN to a g-tube about a year ago and began the slow process of getting his gut used to having food going through it again. We are now able to pump in 8 ounces of formula in less than two hours without triggering vomiting episodes. We've been working on eating regular food too. Since he is getting his nutritional needs met with the formula (and is once again a chubby little guy) we aren't bound to trying to get him to eat nutritious foods. His dinner may consist of chocolate pudding, pretzels, milk and cookies. Anything, so long as he tries to put something in his mouth! He stopped getting fed orally at a critical time in his development and has essentially forgotten how to eat. He works with a feeding therapist (who also works on speech) who is trying to teach him how to move the food around in his mouth, chew it and then swallow it. We've had varying degrees of success throughout the past two years. We frequently cut back on the tube-feeding in an effort to increase his appetite but he doesn't often have much interest in eating.

Vomiting isn't as much of a problem any more but it hasn't stopped completely. He has problems when he has a cold and lots of mucus. He also vomits more when he's constipated. He has a hyperactive gag reflex and will sometimes vomit when we try to brush his teeth.

Talking is another area of delay in his development. He has become quite a mimic and will try to say what we've just said but he doesn't yet have the muscle strength or control to be able to form many of the sounds necessary for speech. Still, he loves to sing along with familiar songs and we, at least, can understand when he's singing "Twinkle, Twinkle, Little Star."

All in all, Ethan is a delightful child who has a real love for life. He loves to have stories read to him, to play hide-and-seek, and to explore his environment. He has a wonderful belly laugh when something amuses him and his face lights up when he sees me at the end of my workday. He makes it very easy to enjoy each day, to find laughter and comfort in everyday things. I pray nightly that these good days will continue for many, many more years!