So Sad

One year ago on this date, Nick had to return to the hospital. We had spent a pretty much ratty December of 2008, running back & forth to John's Hopkins. After two and a half months of IPOP, Nick had been moved to the "clinic." In my notes I question whether this is a good thing or a bad thing, mainly due to Nick's rough IPOP course and my feeling that Nick really wasn't doing that well. Going to the clinic is supposed to mean you are doing better and you need less monitoring, that things are moving in the right direction and you are starting to get "better." Well in my opinion, Nick was NOT starting to get better. December was a rough month for him and for all of us. He wasn't feeling well for many of the days of this month. We all kept putting a good face on it, trying to wish and hope are way to a better physical body for Nick and all the while thinking that Nick's leukemia at least was gone. Now all we had to do was deal with all the side effects of the graft vs. host, the medications, and try to find ways to get Nick back on track to recovery. Nick's last day in IPOP was December 1st. His first clinic visit was December 3rd. On December 3rd, I wrote the following in my notes. "Nick with cough & cold symptoms AGAIN!" His counts were low and he was not feeling well. So even on the first clinic appointment, I felt that things were not right. After that day, there are numerous times I wrote about how poorly Nick was feeling and how bad he looked. This continued to get worse as the month wore on. Now in hindsight, I KNOW that Nick's lungs had already begun changing starting in late November. He coughed for EIGHT WEEKS!!! This was his lungs trying to tell us that something was going on.

Christmas came and Nick did not feel well. He had started with headaches that continued to worsen as each day in December passed. He was losing his appetite and his weight started to drop. By Christmas day Nick gave it his best effort, but, we all knew he did not feel well. As we opened presents on Christmas morning, Nick was just not himself. He looked terrible and I remember thinking to myself, "Oh dear God, this could be Nick's last Christmas! This might be our last Christmas together!" I never said this to anyone. I was so scared that this would make it come true. I didn't understand why I would have this horrible feeling. As a nurse I knew all the bad stuff that could happen and yet, I didn't want that to be the case for my son!! I wanted to be positive. I wanted to be WRONG to chalk it up to over-reaction and over-protection! I prayed to God to save my boy. I prayed that whatever was going on with him was just temporary and he would pull through it. I didn't know what was wrong with him, but, I knew SOMETHING WAS TERRIBLY WRONG!"

The day after Christmas was so bad. Nick just didn't feel right. He continued to have headaches, nausea, vomiting, he was unable to drink enough fluids and his appetite was gone. I called the doctor that day and they told us to "watch" him and call back if anything changed. Well things changed for the worse over the next twenty four hours and we called again on December 27th. Thank God one of the doctors I really liked was on call. She told us to come in right way. We HAD NO IDEA WHAT WAS WRONG WITH NICK.

The first days of that admission were a blur. Poor Nick was in SO MUCH PAIN. THE HEADACHES WERE LIKE MIGRAINES AND HE WAS NAUSEOUS AND THROWING UP pretty much around the clock! No one could figure out what was wrong...days went by until finally a different attending came on and he had a suspicion (which no one told us) and he ordered a lumbar puncture. The LP was done on New Year's Eve! So Nick suffered for five days before this test was done and still no one knew what was going on. It was on January 2nd that we got the UGLY NEWS THAT NICK'S LEUKEMIA WAS BACK IN HIS SPINAL FLUID and this was what was causing all the symptoms. This was just one of many devastating blows to come. Little did we know that this admission was the beginning of the END for Nick!! It was during THIS ADMISSION that Nick's CT scan showed changes called "ground glass opacities." It was during this admission that the pulmonary doctors consulted on Nick, saw this CT scan, told us it would need to be followed up, but, "they were not worried right now." This is when Nick should have had pulmonary function tests done or at least scheduled for some time after his discharge. Everyone was so focused on his CNS relapse that this little piece of data (along with all his other symptoms of cough, SOB, pale, dizzy, etc) got lost in the shuffle and Nick's lungs fell through the cracks!

My God it just breaks my heart into a million pieces to think of this stuff. But, this is what I will be reliving from now until next August and most likely FOREVER!!!! I feel that I have to retell and retell and talk about all that went down, because now it is as if I am watching a movie that I was in and I cannot believe all that Nick went through. I cannot believe what we all went through. I cannot believe that this is how all this is going to END! I cannot stop questioning if only we had caught his lung problem sooner. If only the doctors had listened to me, if only things could have been different, maybe my beautiful son would still be alive or maybe he wouldn't have had to die in a hospital hooked up to a ventilator and maybe I wouldn't be feeling such horrible pain right now. It seems like it will never stop. How much pain is too much? How many hours, day, months, years are enough? This has been going on since May of 2008, the day Nick was diagnosed with this horrible disease. It started then and I don't know when it will ever stop. All I know now is that on this date one year ago, after a sad and bittersweet LAST Christmas, my son had to celebrate his LAST New Year's Eve and New Year's Day in the hospital. Nick didn't even remember any of it due to the pain killers he had to take. He started the New Year with a ten day hospital admission and a diagnosis of leukemia relapse only four months to the day of his BMT! And compared to what was to come, this now seems like child's play!

How is a mother's heart supposed to accept this? How will I ever learn to live with theses thoughts and memories of what happened to my child?

“It is a time when one's spirit is subdued and sad, one knows not why; when the past seems a storm-swept desolation, life a vanity and a burden, and the future but a way to death.”
~Mark Twain

“I ask not for a lighter burden, but for broader shoulders.” Jewish Proverb

Nick would always tell us and the doctors that his back was strong and his shoulders were broad. His attitude was "bring it on," I can handle it. He did not know his enemy would be so formidable and yet he still fought so hard to win because life and those he loved meant so much to him. I think everyone at the hospital was always amazed at his ability to carry this "burden" as I describe it. Nick would not think of what he went through as a burden. He would see all he was going through as a way to hang onto life, to be able to stay with his family, his friends, and the people he loved so much. I pray to God to give me the broad shoulders I will need carry on in this life. I pray for my son to show me how to be a better person even without his wonderful presence in my life. I love you Nickolas. I need you so much right now. I love you more than a wagon full of puppies. Mom