Sunday, August 24, 2008

Pajamas (Dad, skip this)

Yesterday, I went into Katie's room to look at some of her shirts. She was nearly as tall as I am, so some of her favorite shirts fit me. I opened the drawers of her dresser, took out a few shirts, held them up to me, and fell into a deep pit, emotionally.

The shirts show her taste, since she chose them. They show her form, because they fit her. They remind me of her precious, beautiful body, because she wore them. They brought back mental pictures of her, vividly, in various places and states of being.

I saw her at home, enjoying the beginnings of resuming her life,

excited to have her new iHome;

I saw her going places, such as out to eat in a restaurant,
hanging out at home,

visiting with her cousins,

goofing around at her grandparents' home. And then my eyes found her pajamas, in the bottom drawer of her dresser.

Before Katie got sick, I bought a great, new sewing machine. My old one didn't work anymore (it was 20+ years old, and not worth the money it would have cost to repair it). I had fantasies that Katie and I would learn to sew beautiful clothes together, and that when she needed a dress for a prom, or a special outfit, we would go to the fabric store, select the material, choose a pattern and sew just what she wanted, together. It would be made for her, so it would fit like a dream, and she could have anything she fancied, because we could do it ourselves. No limits to the imagination!

We started by making a pair of pajamas for her. She chose a red flannel fabric, with "Blondie" comic strip characters on it, for the bottoms, and a plain red t-shirt fabric for the top. We worked together to pin, cut and sew the bottoms.
She was thrilled when they were finished, and wore them often, but she had had enough of sewing by the time we finished the pants, and she lost interest; we never made the top. I found those "Blondie" pants yesterday, with her other pajamas. It cut me to the core as I pictured her in bed and on the bed, month after month, growing weaker and more bloated from the treatment, and the mass of the tumor in her abdomen.

Once Katie was admitted to the hospital, she needed a lot of comfortable clothes for being in, and on, her bed. She spent most of the months of active treatment, and recovery from surgery (October through March), in bed. She had some p.j.s at home, but nowhere near enough to take her through days of illness and medicines, with the accompanying spills and need for changes of clothing. I put out a call to my sister-in-law, Cheri, who had asked how she could help. She went to a popular store and bought several pairs of very cute, hip, flannel p.j. pants and matching t-shirt tops. We were thrilled and thankful.

As time went on, I was able to get out and shop for her at nearby U Village and online, as were other family members, and then she had more variety of cute and comfortable lounge clothes. I used to ask her which "outfit" she wanted to wear next, before her bath. I would gather up her choice of clean t-shirt and p.j.s, towels and bath sheets, shampoo and bubble bath, before we would head to the tub. It gave me a good feeling to help her put on her clean, good-smelling, colorful fresh pajamas after she had a comforting, warm soak in the tub. (Oh, and Juicy Couture underwear. If you know a female teenage or "tween-age" patient, and want to cheer her, think about buying her a pack of Juicy Couture panties. My sister-in-law, Caroline, did this for Katie, and it was such a HUGE hit that we ordered another 3-pack for Katie later.)

Katie had a picc line (you can Google this; it's a kind of IV line that entered through a vein in her arm and led directly to her heart). That means that long-sleeved shirts would be a problem for accessing her line, but it was autumn, and chemo makes people cold. So we made it work with a collection of cute t-shirts, and Katie always had her own blanket on her bed for added well as some of the many beautiful blankets which kind people made for her.

Later, I had flashbacks to our days in Ronald McDonald House, between chemo treatments. We would move to the House after a 5-day round of chemo, to stay for about 3 weeks of recovery. She had to go to the Hematology-Oncology clinic at Children's regularly after her chemo, to have blood drawn and her progress checked. Nearly every one of those appointments involved her gagging or being sick to her stomach, either in anticipation before we left the House, on the way to the hospital, at the clinic or on the way back to RMcDH. What a life for an 11-year-old child.

Katie was on a blood-thinner called Lovenox, every day from October to February (before her surgery), because she had either clots and/or tiny tumors in her lungs, and the doctors feared that these clots would migrate into her heart and kill her. The purpose of the thinner was to dissolve these, and it was administered through shots, twice a day (rough math: 4 months times 30 days = 120 x twice a day = 240 shots). Gregg and I were taught by the nurses to give her these shots, against our wishes. I thought Katie was sick enough to need a professional nurse, at all times. The hospital staff told us, in polite terms, We have taught slower people than you, and we WILL teach you. Well, they were right; they did teach us.

Gregg, who usually feels faint if he has a blood draw, was the one who did the best job giving Katie her shots. I tried, but when she flinched, I flinched, so I became the hand-holder and comforter (Gregg got so good at it that Katie preferred to have him give her her shots, even when she was an inpatient, during rounds of chemo.) I prepared the meds.; I drew the correct amount of medicine into the syringe from its bottle, and prepared everything for the shots: the ice bag (to numb the site and thus reduce her discomfort), the alcohol wipes (for sterilizing the medicine bottle and the injection site), the band-aid (for afterward). I tracked the times and days of the medications in a chart, the log of her temperature (taken morning and evening), maintained her IV line, etc. The medications varied by day of the week and her symptoms. There were a LOT of them. For me, a former Christian Scientist, this was really a new life. For Katie, the formerly near-perfectly healthy child, it was, too.

Last night, I was moved nearly to tears by the memory of her in those sweet pajamas, crying because of another injection that she had to take for 11 days following each round of chemo (five rounds of chemo times 11 days = 55 additional shots), in addition to the two shots of Lovenox daily. This medication is called GCSF, and its purpose was to help her system recover after the ravages of chemotherapy. The medicine was kept cold, in a refrigerator, in a locked room. I believe that its cost is about $1,000.00 per injection. It was administered once a day, until her blood counts would rise again to a safe level, at which time she could go out in public (the risk of infection was too great to go anywhere until her counts rose).

The GCSF shots HURT. Katie had a very high pain threshold, and was a brave soul. She did not whine or moan about things that often hurt other people. But the GCSF could reduce her to tears, and last night, they almost did the same to me, as I mentally pictured Gregg giving her the shot, with me holding her, comforting her, trying to take that pain away. We had to give her that injection. It was for her own protection from complications, and it did benefit her health, but it's an awful thing for a parent to have to do, to inflict pain in your child's already-sick body. That's the memory I got from opening Katie's dresser drawers and seeing her pajamas. Phew.


Suzanne said...

Karen, I can't even begin to imagine all the painful memories you hold in your heart. Katie went through hell fighting.
I can only hope that one day, you will see her things and the first memories you will have will be the good ones, when she was not sick.
take care,

Sheri said...

These are hard days. The times right after Joseph's first year anniversary brought about so many vivid memories for me, aftershocks and flashbacks to the horror we all went through. It is as if the mind finally, after the first year, starts to honestly assimilate the fact that they are gone. The year of magical thinking has to end eventually I guess.

There will be hard days ahead. There will be good ones too. I weep along side you, my friend. The memory of making the pants together is poignant and precious. I am glad you got to do that together.

Amy said...

Thinking of you on this day! What a memory...the smiles you must have had while making those pants, the laughter while you both made these pants, the precious!

Thanks for sharing the hard details, the tough times with us.

painted maypole said...

wow. this is a beautiful post.

it reminds me of a scene I did in a college acting class my first year, where I was packing a suitcase. The teacher was asking me about the clothes I was putting in the suitcase, so I described them as things like "my favorite red shirt, my jeans" and she kept insisting that they were more than that. That there were memories in each item. I finally started to get it.

but this.... this is it

amanda said...

Several years after my God daughter died, her mother came to me with her Katy's sleepers and asked if I could make a quilt using swatches from the sleepers. (Her Katy was just under a year when she died).

I did and we all find comfort in looking at the different fabrics and picturing Katy in the sleeper. It was a way of keeping her with us and finding good memories in the painful ones.

I am hoping that you have those good memories, too.

catperry said...

I ache for you and those hard visions. I too go through those thoughts and visions of hard, bad days.
What our children had to endure. I pray really hard for peace at those times, for God to help me get through it. To continue the healing we must do, as parents. Iam sending you a hug and praying for peace in your heart this day.

Smileygirl said...

Amazing how seeing those pajamas can allow your heart to overflow with emotion. In all of these pictures of Katie, she is smiling, no matter the situation. What a beautifully brave soul. We could all learn from seeing her smile.

karengberger said...

Thank you all for your kindness.

Amanda, what a great idea. I am not sure if I could do that (emotionally or sewing-wise), but I love the idea.

Katie said...

This post reduced me to tears...the detail only a mother can remember. It made me remember my own flashes with Jakie.

But mostly, it made your Katie that much more real, that much more of an obvious hole in your heart.

Many, many hugs to you today.

HappyWifeHappyLife said...

Painful memories for you.
But remember... you daughter is free of all that pain now.

Mourning is a long, twisty and unpredictable river. My prayers are with you as you navigate it, my friend.