The (often) inconsequential things that occupy Rick's mind...
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02/18/06 00:38:11 - Anniversaries
Last year, we spent the entire month of December in the hospital with Lily. The outpouring of love and support from people we didn’t even know was overwhelming. Two of our friends bought Aren his dream present: a Nintendo Game Cube. Other friends had left presents on our apartment doorstep, while others sent presents anonymously through the mail.
I remember waking up in the hospital room and seeing MaryBeth and Aren walk in. We were excited for Aren to get his presents, but MaryBeth had some surprises for us as well. The kind people at the Ronald McDonald House had left a box about the size of a clothes dryer outside the room, and it was completely filled with presents for all four of us. Lily was pretty sick, so she didn’t unwrap very many things. She did, however, get a very soft stuffed kitten. We still have the videos of us showing her the new toy and hearing her say, “Nook! A kitty!”
Aren spent most of the morning playing his new Game Cube and just having a ball. We were all in good spirits because the doctors had told us that Lily was making good progress and should be able to come home on Monday (the 27th), if everything kept going well. Two more days in the hospital and we would all be able to go home and continue the wait for a bone marrow donor, so that she could have the procedure that would give her a working immune system. So that she could have an immune system that would attack germs instead of her own red blood cells.
This year’s Christmas was different. We were all in Maryland. Well, the three of us were. Aren had received his own new bone marrow about 60 days earlier and was doing well. Once again, other people showed their generosity. This time it was my co-workers who pitched in to buy Aren a Nintendo GameBoy DS. Aren had the same level of excitement, and so did we. Once again, doctors had told us that a child could come home on the 27th, so once again, spirits where high. This year, though, the optimism was much more guarded.
Sure enough, on the 27th, we were saying goodbye to all of the doctors and nurses Aren had been working with over the past four months. In the interest of accuracy, though, I should point out that he hadn’t spent the night in the hospital since sometime in November. The next day we got in the car and started driving back to Arizona.
On December 28, 2004, I was also with Aren. I had just picked him up from a friend who had been watching him while I was at work. Shortly after I got home, MaryBeth called me from the hospital. On the 26th, Lily’s doctors discovered that she was no longer getting better, but was actually getting worse. When I answered, MaryBeth was in tears.
“Rick, they have to put a shunt in her head”.
“What?” I couldn’t believe it. Lily had been through more surgeries than birthdays, even if you counted six-month birthdays. This seemed much more serious.
“Her brain is collecting a lot of fluid. They’ve decided that it’s so urgent that they’re not even going to wait for an operating room to open up. They just kicked me out of her room so they can drill a hole in her head.”
I felt my world crashing down around me. I told MaryBeth that I’d be there as soon as I could, as soon as I could find someone to take Aren. I then went to my bedroom and cried. Wailed. Wept. I cursed God, asking why he was doing this to us after having saved her so many other times. I was sure she would die.
By the next night, however, things were back to normal. MaryBeth and I were into our “Lily’s in the hospital, so what else is new?” swing of things. December 29th, is our wedding anniversary. The doctors said that there were still several antibiotics they were going to treat Lily’s newly-diagnosed pseudomonas meningitis with. Hospital stays being nothing new, we decided to celebrate our six years of marriage with some Mexican take-out. We sat and ate and laughed, never once thinking that we would be in the hospital more than a couple of weeks longer. Lily was doing well enough, after all, that they had been able to remove her ventilation tube. Dr. Shehab said that there was one more medicine, that, though extremely rare had miraculously been found in a hospital across town. Surely we would only be a couple more weeks.
On December 30, 2005, we got out of our car and walked into our new apartment. While MaryBeth and Aren were in D.C., I stayed with a friend in order to save some money. I had learned that the doctors were OK with his coming home – all the way home, not just to Nana’s house outside the district – and moved into this apartment just two weeks earlier. It felt so good to be home, and so wonderful to be with my family again. It felt good to be a family again. December 30, 2005 may be the best day of my life.
December 30, 2004 was definitely the worst. MaryBeth and I were in Lily’s room trying to keep her happy and comfortable. We were still grazing on Christmas treats and reading the books we both got for the holiday when Dr. Shehab walked in.
Dr. Shehab loved Lily. Every time he entered the room, before looking at either of us, he would go right up to Lily and say, “Hi, Lily-poo.” Lily would invariably respond by closing her eyes, turning away from him and saying, “No.”
Dr. Shehab didn’t approach Lily, however. He didn’t look at Lily. It seemed like it was physically painful for him to make eye contact with us.
“The new antibiotic isn’t working. This strain of pseudomonas is resistant to it.”
MaryBeth and I just sat there, still in the pajamas in which we had spent the night on the terribly uncomfortable hospital futons. “But there’s a new drug,” we expected him to say, or maybe, “but she seems to have turned a corner. She’s fighting it on her own”. But he didn’t.
“There are no more antibiotics to try. We are still looking to see if there are any trial medications out there, but there don’t seem to be any. I’m sorry. There’s nothing else we can do.”
MaryBeth and I just looked at him. MaryBeth said something like, “Well, thanks for all your help, and please let us know if anything comes up”. I’m not really sure. I do know, however, that we didn’t make a scene. We didn’t burst into tears or yell or demand a second opinion. We just said “thank you”.
I spent the next four hours or so in bed next to Lily. She was very sick and in a lot of pain, so she was on a lot of medication to help with that. Every now and then, she would wake up long enough to complain that her head hurt and get another boost of medicine. Usually this whole process didn’t last more than three minutes. She would wake up, complain of a headache, and get some more medicine. She would then be happy for about 30 seconds before becoming sad again and going back to sleep.
That night, we signed Lily’s Do Not Resuscitate orders. Though the decision was terribly painful, it was not difficult. There was nothing anyone could do to help her pull through, so the least we could do was to keep her comfortable and try not to prolong the agony. We decided to stop all medications except those for pain, and asked that the shunt be removed from her head.
Later that night, our friends brought Aren up to say good-bye to Lily. He had turned five only ten days earlier, and didn’t understand at first what we were saying. Then it sank in, and he started to cry.
“Dad, I don’t want Lily to die,” he sobbed. And all I could do was tell him “I know, Aren. I don’t want her to die, either.” Our friends offered to take Aren home with him again, and were finally able to convince him to go with them. On his way out the door, he stopped, turned around and said the most devastating words I have ever heard.
“Hey, Lily, guess how much I love you,” he said, paraphrasing one of his favorite books. “I love you all the way to the moon… and back.”
As soon as the first eight words came out of his mouth, I knew what he was going to say. To hear him quote those words was just too much for me. I lost whatever composure I had managed to maintain and sobbed.
Prior to the last six months of her nearly three years on this earth, Lily hadn’t ever “looked” sick. The doctors knew that she had an immune deficiency, but relied more on how she “looked” than her actual lab results – which painted a much more serious picture. Once we convinced someone to run those labs, the decision to transplant her was made rather quickly. Her tissue had already been typed, and a donor had been found. We were just waiting for her to get better before we sent her to DC for the actual procedure.
Sometime between the day we found out that Lily wouldn’t make it and the time that she finally was released from her suffering about four days later, we confronted their hematologist and asked what we were going to do about Aren. He agreed that it was vital to start working Aren up for a bone marrow transplant immediately, even though he didn’t “look” very sick. They would not make the same mistake with him.
One year later, I was tucking Aren into his own bed again. He had been through a lot that year, but he was now home again. In many respects, it was a great day. He had had his immune system completely destroyed and replaced by someone else’s, and was recovering quite well. As I laid down next to him, sang him to sleep and kissed him goodnight, I couldn’t help but think that this was an anniversary. How I had done the same to his sister exactly one year earlier, except I wasn’t telling Lily goodnight. I was saying goodbye.
I don’t think the holiday season will ever be the same again for me. Beginning on Thanksgiving, when we started to see Lily get sick for what would turn out to be her last time up until the New Year’s Holiday (observed January 3rd that year) when she finally passed away. But now, even as we mourn the events that surrounded Lily’s passing, we will always remember how her death spurred the doctors to action and may have saved Aren’s life. For me, December always be a month for irony and anniversaries.
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