Sunday, July 20, 2008

July 20th -- A Very Bad Memory

This is not a happy memory, but I am going to write it anyway, because it is so significant in our lives that it bears remembering, and it is not possible to forget it.

Last year on July 19th, David and I accompanied Katie to the pediatrician's office on Bainbridge. I wanted her to have an x-ray, as she was having odd episodes of pain in her back and legs that didn't seem to relate to anything in particular. Katie had a very high pain tolerance, so this increase in the frequency and intensity of pain puzzled us. She had an attack while at the doctor's office. The doctor called Children's Hospital and ordered a scan for the next day, and ordered an x-ray for us right away. The x-ray showed nothing. This pediatrician is married to an oncologist, and the sadness in her face told me things that I did not want to know.

On the following day, July 20th, Gregg and I took Katie to Children's Hospital for an early-morning CT scan. Gregg and I had had a disagreement over this the night before; I had a bad feeling about this scan, and told him I needed his presence. He felt that I could do it myself, and while I had been on my own with Katie for countless scans, this one seemed different. I prevailed, and he agreed to come with us; David stayed at home. We got there for the first or 2nd appointment of the day, hoping to be able to get home early enough to still have some of the day to enjoy.

Administering the large cup of contrast dye through Katie's NG tube took time. We had given her some medication to help her relax for the scan, and she slept for a while as we waited in a windowless room for the dye to make its way through her system. After a while, we heard voices in the hall outside of our room, and heard familiar names (from the cardiology department) paged on the PA system: cardiac intensivists, an eminent cardiac surgeon, and others. We then heard some familiar voices nearby, all quiet, but in earnest. A staffer entered our room and said that he was very sorry, but there had been a "code" in the CT scan (a child had died while in there); they were preparing to perform (the first ever) surgery on him, right in the scan room. We would have to wait. I began to pray, feeling deep compassion for the family of this child.

We were given an update: they were finished, it had gone well, and they were going to clean the CT room in preparation for us. Three hours had gone by; we had taken turns going to the cafeteria for lunch, and to the restroom. Katie had been sleeping most of the time, and having some dreams/hallucinations.

When it was finally our turn for the scan, I did what I usually did: helped Katie up onto the table, helped her get comfortable and warm, donned a lead apron and held her hand while they scanned her. Then I gave back the apron, and helped Katie off the table, and out of the room. The doctor who read the scan had been called in especially to help us that day, and he was very solicitous, offering a soda pop and a wheelchair for Katie, and meal vouchers for us. We were a bit baffled by this, but perhaps not really. We were told to go up to the Hematology-Oncology clinic to meet with Katie's doctor, after she had a chance to review the scan.

We got situated in an exam room in the clinic, and waited. Dr. P. and Nurse S. came in, looking very grave. Dr. P. said, "I'm afraid I don't have good news for you, Katie. You remember I told you that I would never lie to you - your tumor is back." Katie, Gregg and I were shocked. Katie replied, "Then I'll have surgery." Dr. P. told us that it was not in a place where surgery could remove it. Katie cried and asked how this could have happened, and Dr. P. said that that is the bad thing about cancer; it breaks all the rules.

Our friends from Social Work and Childlife came and stayed with Katie for a few minutes, while Gregg and I met with Dr. P. and Nurse S. privately, and found out what was likely to happen, what they could offer in the way of help, and that they could not predict how long it would be. They called Hospice for us, and set up our case with them. We called my parents and asked them to go to our house and be with David. Then Gregg took Katie to the car, and I went to the pharmacy to await the new drugs -- ones that were supposed to help keep Katie pain-free, as the cancer took over her body, and eventually, took her life.

Some of these drugs are "controlled substances," such as methadone, and it took a long time to fill the prescriptions. I think I called my brother, sister and Stan to tell them the news while I waited. It was the only time that I have been tempted to scream at the pharmacy: "Can't you hurry? She has just been told that she's dying! I want to take her HOME!" But I didn't scream; I just lurked and waited impatiently, until they finally gave me the things we would need, and explained how to use them; then I hurried out to the car. I am so thankful that Gregg was with us that day; I don't know how I would have made it home without him. Katie had a (well-deserved & understandable) "meltdown" in the car, screaming, "I'm going to die! I'm going to die!" I broke down in tears at that point, and Gregg answered quietly, "Well, yes, you are." I sat with Katie and held her as she grieved.

A horrible, horrible memory. A year ago, today.

16 comments:

Michelle said...

I can never in my life say I understand what you went through with your daughter. I can just say my heart and prayers go out to you.

Kay said...

I've seen this played out around us while our son was sick. I was so thankful he was young and 'clueless' to the gravity of the situation he was in. I can't even imagine what going through that must be like. I am at the point of tears just thinking about it. You're in my prayers.

Smileygirl said...

Just taking all of this in...I'm sitting here, quietly, thinking of you as this is not an easy "anniversary" to recall. Like Michelle said, my heart and prayers are with you right now.

Laurie Keller said...

When you put it all out there like this it's such a gift. All I did was quiet myself and lie here reading your thoughts. Thank God we can be here for each other. Thank God that you have this place where you CAN put it out there, and then receive a piece of all of us who love you and can help get you through. How painful life can be ... that's just the cold hard truth. I can't even imagine being in your shoes that day ... to hear the news, witness Katie's response to the Doctor, and then have to get in the car with she and David and make the drive home. The beauty here for me is that it's all real. None of you pretended that it was anything other than what it was. That's what makes you so special ... the fact that you are very very real. Lots of love to you on this difficult day. Thank you for bearing your soul.

suz said...

My heart breaks for you. These are not good memories. But they are important. I don't know what I would do in your position. you seem to have such a strength about you.....thank you for sharing.
you are in my thoughts.

amanda said...

Praying for you all, including Katie, each and every day... I can not begin to imagine what each day this year must be like when you look back and miss your beautiful girl. I am honored that you share your experience and your memories with us and allow us a birds eye view into your life. Thank you.

HappyWifeHappyLife said...

Karen,
I'm sure this was very tough to write, and re-play this episode, in your mind.

I am so thankful your husband was with you on that day. I can't imagine how a single parent would have been able to cope with a situation like this (or someone without faith? how do they cope with this?)

I wish I had "better" words to say... but I don't. Know you, David and Gregg continue to be in my prayers, esp as we go through these days between now and the middle of next month.

karengberger said...

Thank you for your kindness, all of you. It just feels better to get it out than to keep it in.

Karla W. said...
This comment has been removed by the author.
Karla W. said...

Oh wow Karen, I had no idea that was how it happened. Thank you for sharing this part of Kattie's story.

While reading I couldn't help but be reminded of how wonderful Children's is. I've heard stories that have gone much differently, where the doctors refuse to talk to the children involved, even when they are older than Katie was. I was glad to hear that they treated Katie and you with such caring and respect.

Sending hugs, Karla

Trueda said...

Karen,

What powerful memories! Thank you for being so honest and sharing them with us.

Isn't amazing how memories can yank us right back in time? Over 30 years ago, on a July 16th when I was 15, my mom died in a horrible accident. Every year around this time I find myself feeling an unexpected sadness-until I remember why.

Karen, I'm so glad you were able to convince Gregg of the need for him to be there. Mother's intuition at it's best, I guess! It is so hard to go through these things as parents together, even harder alone.

Blessing and hugs,
Trueda
www.caringbridge.org/visit/joshgooding

Maggie said...

I went to bed crying after reading your post, I dont know what to say. How heartbreaking and terrifying that day must have been... I am praying for you my dear.

Sheri said...

I am sorry I did not see this yesterday.

My heart is so heavy for you. These memories, so real, so vital, so haunting, so painful. We'd not want to forget them and yet the remembering is so gut wrenching. Our paths in losing our children to cancer were so different, and yet so similar. I ache for you and long to sit beside you.

The Engine of the Family said...

No family should have to go through such tragic times. We don't know why these things happen, only that they do, to anyone and everyone. We can only hope and pray that someday we will see a cure for all the horrible diseases. My heart hurts for you and the painful memories that are swirling through your life right now. Take care and think of Katie in her heaven.

Dreamer girl said...

You show the truth in your life. When you read that message from your new book (from your sister) about facing our fears, it seems to me that you are facing it with truth and honesty just like the message. You are telling your story with all the realities of what you feel now and have experienced. At the same time, I see a wonderful lady who is honest, caring, helping others, and is helping others who haven't experienced this to appreciate what we have and at the same time helping people who have or are experiencing cancer. Thanks for sharing your story. Your Katie sounds like she is a lot like her mother. Honest and true about her feelings. You are in my prayers.

heather b said...

been gone with the girls for a few days out of town. interesting. i was up all night this particular evening. thought of you and your daughter from 12-3a.m. prayed for your peace and asked God to be with you and help you feel His presence. You are so brave. Keep telling your story.