Saturday, December 24, 2011

Our Own Christmas Miracle

Exactly ten years ago, we were preparing for the worst as we brought Tommy (who was then 3.5 years old) home from Children's Hospital Oakland. He had been having localized seizures in his left arm, and we had gotten approval from our insurance provider to take him to a neurologist, to do an EEG. As a precaution, they did a CT scan to make sure there wasn't anything on his brain that shouldn't be. While we waited for the results, we were told that as long as the seizures were under control by the time we got the results (they had him hooked up to an IV with meds) that he could go home, but if he was still having episodes, they wanted to keep him over-night.

The doctor came into the room we were waiting in and said "Weeell, something showed up", and he was admitted to CHO then and there. At this point, it was after dinner, and Catie (who was 5) had been at my parents' house all day. Thank God that both Mike and I had been there, because we were not about to leave either of our kids without us that night. We decided that Mike would stay with Tommy in Oakland, since I was nearly six months pregnant with Monica and would need a little more preparation for an overnight stay away from home.

So I drove the 45-50 minutes home, by myself, after having had a sob-fest in the parking garage. This was right around the time we had gotten our first mobile phones, so I was able to call my mom and tell her I was on my way to get Catie, and I was coming alone. I can't tell you anything about that drive; I remember none of it. I do remember arriving at my parents' house (which was thankfully only 1/4 mile or so from ours at that point) and grabbing Catie into my arms and just holding her, trying to hold myself together. I did pretty well until we actually got home and were heading in the door when one of my neighbors, who I really wasn't very close to and am no longer in contact with, was at her door and asked me how we were. I told her, and she patiently listened to me while I cried.

It was difficult for Catie and I to sleep that night. We were still in our little 2 bedroom condo then, and both of our roommates were gone. I took her with me to Oakland the next morning, so she could see her brother, who she already missed. Because of Tommy's age and need to to be hooked up to an IV, he was in one the crib "cages" they have, rather than a regular bed. These bed have clear sides that go up and down like those of a crib, but they, and the ends, are probably three feet high. Catie wanted to be in there with Tommy, and the nurses said that it was fine. Soon, the two of them were bouncing up and down like they were on a trampoline. I remember looking at the nurse thinking "Are you *sure* this is ok?" and she reassured me that it was. They were laughing and jumping, and having a grand time as they ignored the tubes in Tommy's arm. I turned my attention to the wall behind me, where the doctor and the radiologist were hanging up MRI pictures they had taken earlier that morning. Mike and I stood close to each other as they pointed out the mass on Tommy's brain, which they had said was either a tumor or possibly a cluster of blood vessels. It was then that the radiologist turned to us and said, "I have to be honest. I am 99.99% certain that it is a tumor." They talked about the possibility and likelihood of chemo and radiation therapy. they talked a lot, but right now I could not tell you any more of what was said.

I remember my breath catching, and being introduced to one of the hospital social workers, who was very attentive to me, making sure I was ok. I remember walking down the hallway with her in order to get a little air and then I was breaking down in her arms. I stayed the night at the hospital that night and Mike went home with Catie. The hospital was pretty full, so Tommy had been placed on the floor with long-term care patients, and most of them were a little older than he was, and/or suffering from physical ailments that kept them from being as exuberant as my lively, didn't-realize-there-was-anything-wrong-with-him little sweetheart. All these things combined, plus his adorable puppy dog eyes and ready smile, made him a favorite with the nurses. Between him and the baby in my belly, they were constantly asking if we needed anything, and chatting and playing with Tommy. Since his vitals needed to be monitored around the clock, there were times when they would linger in our room when the rest of the floor was quiet, and it was very comforting.

If there ever is a "good" time of year to be in a hospital, the Christmas season is it. Tommy was visited by Marines, firemen, police, carolers, church groups, Santa and more. Everyone came bearing gifts, and Tommy just thought it was the best thing ever. (We came home with so much stuff!!!) He was there for a handful of days when they said he was stable enough to be home for Christmas. The head neurosurgeon at the hospital was on vacation at that time, but was due to be back right after the new year. They said Tommy's situation was urgent enough to need attention sooner that later, but that we could afford to wait until the new year in order to be attended by the best they had. We brought him home and finished preparing for Christmas, wondering if it was going to be his last.

Those were some of the darkest days I can remember, and even now, the memory of them is very painful. It is extremely difficult to concentrate on your life when one of your children is seriously ill. My life at that time is such a blur; so much of my focus was spent on making sure Tommy got his anti-seizure meds, making sure he wasn't having any break through seizures, making sure everything was ready for his next session of staying in the hospital, etc etc etc. Through all this, he was cheerful and was still my sweet little buddy. His biggest concern was that his "arm wasn't working right" (it was basically paralyzed from the 30-50 seizures it was having every day) and he had to use his right hand to pick up the left in order to get his thumb in his mouth.

I have very little recollection of how Catie did during all this time, but her sweetness struck me even back then. We had decided to shave Tommy's head since all they would have done for the surgery is shave a rectangle out of his hair. The night we took care of it, Catie said she wanted to cut her hair off, too, so that Tommy wouldn't be the only one. We did *not* shave her head, but I did giver her a bob, cutting off a good six inches of the length of her hair. We have a picture of the two of them with their new haircuts and the biggest grins on their faces. It is simultaneously one of the most heart-warming and heart-wrenching photos I have ever seen.

His surgery was scheduled for January 3rd, and we had one more MRI the day before, so that they could glue little markers to his head so that they could get an exact measurement of where the mass was in relation to the markers. Those little discs managed to not fall off during the night and were still intact, exactly where they had been placed, when we checked in the next day. He was not allowed to eat or drink before the surgery, and this would have been ok if not for the other kid in the pre-op waiting room who was eating candy. This child was there with his father and he himself was not the patient; it had become obvious that they were there for someone else. I swear I wanted to scream at the man and make him read the sign out loud: NO FOOD OR DRINK ALLOWED IN THIS ROOM. My inner Mama Bear was raging because his kid was eating candy and when mine said he was so hungry and asked if he could have some, I had to say no. I am still a little pissed about this.

It finally got to the time where we could take him into the pre-op room, where they gave him a Kool-Aid like drink that had some medicine to nearly knock him out before they started sticking things into him. My parents were there by then, to stay with us during the surgery. I am eternally grateful for their presence; their support during all that time was absolutely life-saving. Without family and our close friends being there for us, I just can't imagine how we would have gotten through. While we waited for the "Kool-Aid" to kick in (which was only a minute or two) the surgeon came out to talk to us about the MRI that had been taken the previous morning.

"While it still needs to come out, I am back to thinking it is just a cluster of blood vessels."

The words didn't sink in, at first. The shock had me numbed from head to foot. It wasn't until they put Tommy on the gurney and wheeled him away and we headed for the door that I nearly collapsed as the news sunk in. Maybe not cancer. Maybe not cancer. Maybe NOT CANCER! I cried so hard, I remember the four of us just clustered there at the doorway and I am sure I wasn't the only one sobbing.

Then came the waiting. We headed to the cafeteria area, toting the pager they gave us so we wouldn't have to wait right outside the OR. We played a lot of cards; I really don't remember what else. They would page us every now and then in order to give us updates on how things were going. At one point, they had taken a piece of the mass (which was the size of a ping-pong ball) and did what they called a "freeze test", to get an idea of what it was while they were still working on him. This test was negative. More hope! We would still not know for certain until they could biopsy the whole mass, but there was now a HUGE amount of hope, where once there was only a small amount that was attached to faithful acceptance.

When they were done and we were allowed to see him, he was hardly recognizable because his head was so swollen, yet I had never seen anything so beautiful. He spent that first night in the ER so they could make sure he remained stable, and Mike stayed with him. It was even harder for me to leave him that night than it had been on the nights he was there before. Mike saw enough in that ER that night that made us even more grateful for our new prognosis, yet heart sick for all the other occupants and their families. I was there the next day, and Tommy was awake yet very frustrated. they wouldn't let him eat or drink because of the anesthesia, and he was greatly irritated by the catheter. He had already been potty-trained, and it was very confusing for him when he was told to "just go".

We were moved to a regular room that next day. Since the cluster of blood vessels (as it was now officially known as) had been right on the motor sensory strip of his right lobe, his entire left side was partially paralyzed from the surgery. We knew there were going to be problems with his arm since it had already been so severely affected, but no one could have said how responsive his trunk and leg would be until he could try to walk. Which he did, only a couple of days later. He improved so rapidly that what had been estimated as a possible 10-14 day stay turned into a four or five day stay. Everyone was amazed at how quickly he was recovering, and soon it was time for us to go home. ALL of us.


There are so many other things that went on during that time that gave us the strength we needed to go on. Mike had ended up taking nearly a month off of work, yet his co-workers made sure that we weren't forgotten. They had taken up a collection to help us with the expenses of driving to Oakland from Napa every day, eating out of vending machines and the hospital cafeteria, and got Tommy a GINORMOUS stuffed dog that was as tall as he was. There was even a McDonald's gift certificate, because they had heard how he loved Happy Meals. After he came home, we took a picture of Tommy giving the bear a hug and attached it to a letter that Mike hung up at work, thanking everyone for all they had done.

We also received letter and emails and phone calls from loved ones far and near, and also from complete strangers who had heard about us "from a friend of a friend of a friend". It truly amazed us how much people who had never even met us cared about us.

The Sunday that was between Christmas and New Year's that year, we were asked to bring the gifts to the altar at Mass. Even then, before the surgery, I felt like it was God's way of reminding me that there was no way we were going to be forgotten. I remember praying in front of the manger scene after Mass and placing all of my troubles in front of the Holy Family. As bad as things were, I thought, Mary had it worse, what with having to watch her Son be tortured and crucified for no legitimate reason. Ever since then, I have felt a very special bond with the Blessed Mother.

The next couple of years were spent largely at the physical therapist's office, and the staff there became like another family, too. We started going there before Monica was born (we missed an appointment that day...) and I remember her learning to walk on one of their big therapy tables as we waited for Tommy. Just like with the nurses at the hospital, he had charmed everyone at the PT office. This was especially true of the seniors group who was always there for water aerobics; they just loved it on the days when Tommy got to work on his gross-motor skills in the water.

Ten years later, my boy is a healthy young man of thirteen. He is an active Boy Scout who dreams of reaching the rank of "Eagle Scout", an altar boy who always volunteers when they are short-handed at Mass, and my resident go-to-guy for muscles when Mike is unavailable. Someone who didn't know his history and what to look for would never even know that he had to go through so much at such a young age.

I hope that my sharing this will bring you a little Christmas warmth, and that it will act as a reminder that there most certainly ARE still miracles happening in our world.

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