Things Fall Apart

I've started attending church again. I haven't regularly attended church since Katie was admitted to the hospital in October of 2006...not because I was mad at God, but because I couldn't stand the crowds of people, nor contain my emotions during worship. I've been known to cry uncontrollably in church, which is distracting and distressing to me (and perhaps to others). But I've found a church that doesn't evoke floods of tears, and am enjoying it.

It's possible that I "should" go back to my old church, and simply surrender to my grief; let the tears come as I re-enter that place where we were once so happy, so much a part of things, held in great love. However, I haven't felt drawn to do so, and I'm going to honor that.

The homily in today's service touched on Jesus' prophecy that things were going to get very hot, very bad for his disciples. He spoke of catastrophe, betrayals, destruction, trials and the coming need to verbally give account, or defend the faith. He told his disciples that some of them would be killed, but then said "not a hair of your head will be harmed." What? How can both of those truths coexist? Apparently, he was speaking poetically about those precious hairs.

Every time I hear such words nowadays, I hear them through the filter of what happened to Katie and to our family. It's not an intellectual exercise; it just happens - I can't not go there. All stories that involve things falling apart, ground breaking up underfoot, loss, disaster - anything that brings to mind the end of the world as we know it - reminds me of the year of Katie's illness and death. I always ask myself if these things are true, in light of my own experience. It makes church very interesting.

The privilege of sharing the Eucharist on a quiet Sunday morning is important to me. I love that ritual, and its deep symbolic and literal meaning. It is a tiny feast, a weekly "Thanksgiving" meal, where all are welcome; it is purifying, nourishing and comforting.

In his homily, the pastor also asked us where we go - to whom do we turn - when things fall apart. He gave us his own answer, which was a bit surprising - and it made me think.

To whom do I turn? 

The "right" answer would be "to God," but I'm not sure that's completely true - at least, it's not that simple or direct. I turn inward, at first, when the ground is pulled out from under my feet. I take stock - do a quick assessment - of what has happened, what I have and what I have lost.

I turn to God, yes, but I also turn to those closest to me - my family. That's where we turned when Katie got sick - to the solidarity of one another's love and care - as well as to our home community, the larger community of Seattle Children's Hospital, our church and Ronald McDonald House. God was (is) present in all of those people and entities. He showed His love and presence through their love and caring.

After sitting in church with two of my friends (both of them bereaved parents), I drove home and felt grateful and privileged to be able to worship, as well as to have been able to go on a date on Saturday with my husband. We hiked for a few miles on a trail that is new to us, looked at beautiful wooden boats in a marina, boats on the ways (in all states of repair/disrepair), and then we moseyed through the Victorian town, admiring the architecture. Finally, we stopped at a pub for a light meal and a beer, and then finished our date at the local ice cream/candy shop. It was lovely.

We have lost a great deal, but we have not lost everything (as some of the victims of the typhoon in the Philippines have). But our loss touches everything; everything was (and is) affected by it. Nothing - not one thing - is as it was before Katie got sick and died, leaving our family to go on with three of us here, and one there.

There is a part of me that will always see my life through the lens of "things falling apart." In the six years since Katie's passing, I have adjusted to seeing life through the eyes of a woman who lives with three people in one room at Ronald McDonald House.

I am still that woman: the one who takes a walk each day to let off steam; who runs to the 5th floor of the hospital in her pajamas to shower before her daughter wakes up; who steals a couple of hours a week to spend alone with her husband, trying to preserve her marriage under intense stress; one who shares one bathroom with a minimum of three other people; one who has become a nurse, juggling medical supplies, helping her sick child to walk where she doesn't want to go, pushing a wheelchair, knowing her healthy child is not getting the attention he deserves, but unable to be in two places at once.

Though the conditions of my life have changed, I still see the world through that woman's eyes.

I continue to be amazed that we can go anywhere we'd like on a date, taking as much time as we wish, ordering whatever sounds good. It is such a privilege. While I might have previously thought (in my ignorance) that I "deserved" such abundance, now I know that it is all gift, and that it can come - and go - at any time. Jesus predicted it in his day, and it is still obviously true - friends will betray, disasters will happen, what we thought we could control slips through our hands. Though I have been given much, much has been required of me. Any time at all, anything can happen...and it's interesting that, rather than frightening me, this knowledge makes me grateful for everything I have, and for everything I have had to let go.

What an appropriate message for the week of Thanksgiving, and of David's 21st birthday.

Ronald McDonald House

Have you ever visited a Ronald McDonald House? Have you ever stayed in one? If you haven't had any contact with this charity, I highly recommend you look it up. It is one of the greatest inventions for families who have sick children.

Our family lived in Seattle's Ronald McDonald House for many months in 2006-2007. It provided a haven, a safe, clean, cozy, friendly, supportive environment for us when Katie was receiving her treatment for cancer. It was affordable (we were still paying our mortgage, property taxes and other bills on our home while living in Seattle), and very close to the hospital - both necessities for our family. We spent Thanksgiving and Christmas there.

Thanksgiving 2006, Ronald McDonald House

Christmas 2006, Ronald McDonald House

Gregg and Katie in our room at the House

In the autumn of 2007, we attended a benefit for the House. Our sister-in-law, Caroline, works for Alaska Airlines, a company which is a big supporter of Ronald McDonald House. They dedicated a page in the auction catalog to Katie, and invited our family to sit at the company's table. It was only two months after Katie's passing, and I remember feeling kind of numb, unaccustomed to being out in a crowd, in public - and I remember being very, very thankful to Alaska Airlines for their kindness, compassion and generosity.

Ronald McDonald House Gala, 2007

Last weekend, we attended the House benefit again, the first time since 2007. David was at home for the weekend, so it was lovely to share the evening with him. Again, Alaska Airlines hosted a table and donated many large-ticket items to the live auction. This time, I was able to donate two items to the silent auction, which I'm happy to say someone bought at 150% of the stated value. Hooray for generous bidders! One of the items was a beach wreath like this one

and the other was a copy of my book (a suggestion from the Ronald McDonald House staff).

It was fun to dress up and take the ferry to the city with my guys,

 spend the evening with my brother & sister-in-law and her colleagues,

to feel the love and support Seattle gives to the House, and to give back to a place which gave so much to us in a time of great need.

It was also emotional for some of us, and it brought back hard memories. You just never know what is going to take you down for the count...but it was worth it.

Lest you think my life is just one gala after another, here are the piles of ironing that awaited me afterward...

As Jack Kornfield says, "After the Ecstasy, the Laundry."

Cat Care

When they were young, Katie and David wanted a cat, and with two children, you know it is better to get two kittens than one. We bought our cats, Latte and Liger, from the Humane Society through a local pet shop when they were tiny - and the same size.

Things have changed.

When you have a pet from babyhood, you don't really know what its character will be. Both of our kittens were shy at first. David and Katie chose them from a group of kittens, and were beyond thrilled to bring them home. I remember the day. We called my parents, who used to have cats, and they came over to meet the new "grandkittens."

We decided that Liger's name didn't fit him (I can't remember what it was), so we thought of new possibilities. "Tiger" was one, since he has stripes, but that was passed over in favor of "Liger," due to our enjoyment of the movie "Napoleon Dynamite." Latte's name seemed to fit him (Italian for "milk") since he is milky-colored, so there was no need to make a change there. The kids took wonderful care of the kittens from the time we brought them home in May of 2006 until Katie's cancer diagnosis in October of that same year. Then came the big separation.

We were blessed by our neighbors, who took care of the cats when we had to move to Seattle and live in Ronald McDonald House and Children's Hospital. At first, Gregg and David commuted back and forth, but that was exhausting, and we did not like being separated from each other so much. Our neighbors stepped in, fed our cats, let them in and out of the house, changed the litter box, mowed our lawn and brought in our mail. They took perfect care of our home when we were unable to do so ourselves, and that included our cats. They gave the cats love and attention so that their characters developed well; the cats are now comfortable with all kinds of people.

We missed Latte & Liger, and were dreadfully homesick, but there was nothing we could do about that except to be patient. Katie missed them so much that she got a toy cat in the hospital's gift shop; it had batteries, and made a purring sound. It even fooled many of the hospital staff, but it wasn't the same as the real thing.

The day came when we were able to bring Katie home for a weekend visit. The cats gave all of us the "cold shoulder" except for her! Isn't that interesting? It was as if they understood. She loved being with them again, and they loved her. Eventually, they forgave the rest of us.

After all five rounds of chemo were completed, we were allowed to move back home for three weeks of rest before Katie's big surgery. That was another happy reunion between cats and family. Then we had to move back into Ronald McDonald House for Katie's surgery. It lasted 18 hours, and she nearly died in the process, but she didn't die - she lived. It was a miracle. After her surgery and six weeks of recovery, we got to come home for good. The cats have been a source of a great deal of joy, love and laughter for our family. They entertained and comforted Katie right up until the day she died.

Katie was paralysed from the waist down two weeks before she passed away. Latte would come to her room and sit with her.

They are no longer shy, but their temperaments have developed quite differently. Liger is like Gandhi, and Latte is like Attila the Hun. Liger is very feline, and Latte is dog-like.

Latte has some kind of injury on his ear right now. I am trying to avoid a trip to the vet, because A.) the cats HATE-hate-HATE the car, B.) I don't like leaving them with the vet overnight and C.) in my experience with cats, nature can often resolve the problem. So I am waiting. While I wait, Latte has a tendency to make a mess on any and all furniture - he heads right for the light-colored upholstery when he has any blood or such. So last night, I decided to give his ear a cat bath (or a "whore's bath", for Smileygirl's benefit) with a warm, wet cloth. He fought me at first, but then he started to purr and come back for more, so I wrung the cloth out and repeated the process several times. I imagine that it may have felt to him like his original cat-mother was licking his head. It was a win-win situation for us:  his ear looked better, he was happy, and now, I think I know how a mother cat feels - minus the fur-balls catching in my throat.

Craft for a Cause Contest : Joann.com

Here is a great idea that was sent to me by Karla at A Little Something to Share:
Craft for a Cause Contest : Joann.com

We met Karla and her family when we were living in Ronald McDonald House. Her older daughter, Mandi, went to the Hutch School with David, and her younger daughter, Sam, was the patient. I'm happy to report that Sam is doing fabulously well and is in remission, and she and Mandi are now a big sisters to baby James.

Thanks for sharing this, Karla!

Christmas 2006 & Happy News in 2009

In 2006, Katie spent Christmas Eve and part of Christmas Day in the hospital (and so did we). She was finishing up a round of chemotherapy, and she knew that she would feel better on intravenous anti-nausea medications than she would if we had to give them to her through her NG (nasogastric) tube at Ronald McDonald House. She elected to stay in the hospital as long as she could, to have more effective drugs, thus keeping her stomach happy longer, and being more comfortable, overall.

My sister, David and I went to Michael's Craft Store in the days preceding Christmas, to buy supplies for making a wreath, and two small trees for the kids to decorate. We brought Katie's tree to the hospital with us, after we decorated it at Ronald McDonald House. It's barely visible in the photo above; it brightened up the room, but it was still Christmas in a hospital room.

On Christmas Eve, Santa came with LOTS of gifts for all of the children. One of Katie's favorite nurses (Shauna, seen here with Santa) was taking care of her, so that helped to make Christmas Eve better. It wasn't a good way to spend Christmas Eve, but it was bearable.

Gregg's side of the family gathered in Poulsbo, and David went to be with them. We felt that he would have more fun there than he would with us in the hospital. He did.

David with cousin Joey and Mike.

David with cousin Joseph; cousin Kate is in the background.

David with Mike.

We moved Katie back to Ronald McDonald House on Christmas Day. My side of the family gathered with us in Seattle.

My brother, Jim, with me at RMcDH, 12.25.06. Note the ever-present pink bucket atop the armoire - one of many.

Gregg, me and my mom in our room at Ronald McDonald House, Christmas Day, 2006.

Back to Katie's nurse, Shauna: she has a wonderful temperament: calm, funny, intelligent, quick-witted, easy-going, unflappable, and kind. Shauna took wonderful care of Katie, and related very well to David, too.

Now, here is the happy news:  Shauna has become a MOTHER! We are thrilled for her. She has a blog about her journey to adopt her daughter from Ethiopia (on my sidebar: "My Greatest Adventure"). We wish them a delightful first Christmas together!

Coping in Caregiving

Our entry into the world of special needs parenting was sudden. We had experienced the occasional ear infection, chicken pox, broken bone, bronchitis, etc., but serious illness had never been a part of either my husband’s life nor mine. In fact, I was brought up in a “non-medical” household (in which we prayed, rather than taking medicine or going to the doctor). Our kids had each vomited once or twice in their lifetime. We were blissfully ignorant of what it was like to care for a critically ill child.

When Katie became ill in the autumn of her 6th grade school year, we were not prepared to move into the hospital full-time, but that is what we did. We were even less prepared to be discharged to Ronald McDonald House with all of Katie’s post-chemotherapy needs, knowing that she had a large tumor in her abdomen (encasing her kidney, adrenal gland, in a lobe of her liver, filling her inferior vena cava and entering her heart). We had been told that she could die at any time from this tumor. To be discharged to Ronald McDonald House meant more togetherness, a more comfortable environment for the four of us, but it also meant a frightening degree of responsibility for Katie’s physical well-being, when she was very fragile indeed. We knew NOTHING about how to prepare and give injections, maintain a PICC line, maintain the nasal-gastric tube feeds and pump, treat severe nausea…but we learned, quickly.

My way of coping was a little bit OCD and artistic, as I am. I began with a small spiral-bound notebook in which I wrote down every medication as it was given, her temperature 2x a day, how many cans of formula she took in - how much she lost if she was sick - and the time when each thing occurred. I made a “map” of the medications and tools needed for morning and evening. I created a color-coded system for this, as well, and later, I used Microsoft Outlook to track and record the more complex matters that arose. Temperature, line flushing syringes, injections (2 or 3 per day, depending upon the chemotherapy cycle), antibiotics, anti-nausea meds, liquid nutrition – we were taught by the best professionals to use and administer these, and we did it all.

At first, I strongly resisted this role of home health care nurse. I felt that Katie was sick enough to deserve a professional caregiver. We even called an agency and interviewed one. But the important thing – which surprised us greatly - was that Katie preferred our non-professional, sometimes bumbling, care-giving to that given by anyone else. Even when she was an inpatient in the hospital, she preferred to have her dad give her injections, rather than a nurse! Her dad, who used to become faint at seeing his own blood drawn, became the man who gave Katie her shots. I was the one who drew them up, prepared the ice bag (to numb the spot), sterilized her skin, held her hands for comfort while the shot was given, and put on the band-aid afterward. We shared all of the care-giving responsibilities, becoming a sort of relay-medical-team, and it worked for us, as a family.

When Katie relapsed and needed hospice care, we learned more. We were able to take care of her, here at home; she never had to go back to the hospital, but was able to stay in her own familiar house, sleep in her own bed, with all of her favorite things around her. She had us, her family and friends, and our cats with her. She passed away peacefully in her room, with me, her dad and her brother by her side.

Katie was sick for 10 months before she passed away. Our time as parents of a child with special needs was relatively short; our "special need" now is grief. Some of you have been taking care of a child with special needs for many years, and you know more about this calling than I ever will. I can only try to imagine how tiring, how discouraging, and how frustrating it may be on some days, with insurance issues, medical issues, fatigue, sadness, the hopes and dreams that are not coming to fruition, the need for respite care. You are doing a great work, every single day that you get up, advocate and care for your child, go to bed, and then get up and do it again.

I want to salute you for the job that you do every day. You are giving your child love, tenderness and comfort EVERY time you give a medication, a feeding, a shot, or hold her hand while it happens - every time you make a phone call to find the right treatment, doctor, therapy or the best school placement for him. Every single act of caring translates into love. The memory of giving that loving care to Katie during her illness is precious to me now. And love is the best medicine we have to offer each other.

Blessings to you and your children!

You can also read this post at Hopeful Parents.

Patient Endurance

ka'tie'less, a.  1. Without Katie

ka'tie'less-ness, n.  1. The state of being without Katie.

I've read that cancer patients and their families typically suffer from symptoms of Post Traumatic Stress Disorder, the disorder that plagues rape victims and combat veterans. On many days, I feel as if I suffer from it. I have horrendous flashbacks, bad mental pictures - from the days in the hospital, and on hospice care - that flit onto the screen of my mind, and stick there, randomly. I have to make a conscious effort to come back to, and remain in, the present. If I stay in the flashbacks, I suffer the horrors again; if I leave them, I leave memories of my daughter.

I've been feeling anger in my grieving, lately. Perhaps it's just a phase; I don't know. But I am not someone who is really at ease being angry; I prefer to live with gratitude and love. I think anger, left to grow, becomes toxicity, and I don't want my life and my work to be laced with toxic anger.

"There is nothing that pleases the Lord so much as praise. There is
no test of faith so true as the grace of thanksgiving. Are you

praising God enough? Are you thanking Him for your actual blessings

that are more than can be numbered, and are you daring to praise
Him even for those trials which are but blessings in disguise? Have
you learned to praise Him in advance for the things that have not
yet come?"   - Anonymous

After reading this quote first thing this morning, I confess, I felt angry. Because if this quote suggests that the trial of Katie's illness and death was/is a BLESSING,  NO, thank you!

What would that mean about God?

What would that mean about Katie? Her life is a blessing, but her suffering and death? I don't see it that way. Being Katie-less isn't a blessing, in disguise or otherwise.

As I read further (in a daily devotional), here is what I found:

"These then were Christ's inward virtues: humility, charity, and

patient endurance. These three virtues Christ our Bridegroom

practised during all His life, and He died with them, and paid our

debt according to justice. And of His generosity He has opened His

side. Thence flow forth the rivers of well-being and the sacraments

of bliss. And He has ascended in power, and sits at the right hand

of the Father, and reigns in eternity." - THE ADORNMENT OF THE SPIRITUAL MARRIAGE, by St. John of Rusybroeck (1293-1381)

For sure, I learned more humility on the cancer ward; I had never lived with life-threatening illness, never lived in a hospital, never been a nurse. I was new, I made mistakes, and learned to laugh at myself. Charity was natural, as we love our children deeply. But patient endurance is not something I was taught at home, nor have I observed it being held up as a desirable virtue in our culture. Fixing, changing, improving, earning: yes. Patient endurance? That sounds like failure, like lying down and giving up. But it's not.

I think patient endurance may be the only non-violent way to deal with something like suffering and death from an incurable disease.

Patient endurance is what I saw Katie (and many other kids in the hospital and on caringbridge) exemplify. I also see it in their families.

Patient endurance means entering hell on earth with those you love, so no one has to suffer alone.

Patient endurance means staying when everyone (including you) wants to run away.

Patient endurance means witnessing horrors you wish you'd never seen, and offering comfort and love in the midst of those horrors.

Patient endurance means listening to words that cut your heart.

Patient endurance means feeling fear and facing into it.

Patient endurance means knowing that there is no reasonable hope for the outcome you want, but hoping for the best anyway.
Patient endurance means getting up every morning, no matter how tired you are, to face whatever comes next.

Patient endurance means dealing with what is thrown at you, moment by moment.

Patient endurance means gratitude for the smallest joys.

Patient endurance means looking for the good and the humor in the moment.

Patient endurance means learning to live without what you want.
Patient endurance means learning to live with what you don't want.

Patient endurance would not be possible, for me, without God.

"But He said to me, My grace (My favor and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore, I will all the more gladly glory in my weaknesses and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me!" - 2 Corinthians 12:9 (Amplified Bible)

Put in other words:  "...so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations...[and] push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

'My grace is enough; it's all you need.

My strength comes into its own in your weakness.'

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift.

 It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." - 2 Corinthians 12:7-10 (The Message)

I'm not there yet. I am still "focusing on the handicap;" I want my daughter!

I will never believe that it was God's will for Katie to suffer and die. I believe that His will, for all of us, is good, but that - for some mysterious reason - this is a broken and flawed world that we inhabit.
 

Perhaps, now, patient endurance for me means learning to live with this "thorn," this "weakness," this horrendous, stupendous, enormous loss, this Katieless-ness, with patience, and enduring it with as much grace as possible.

I am thankful that God knows that we need a pattern, and that He has given us Jesus, Mary, Saul (who became the Apostle Paul, and who wrote the letter quoted above), and Abraham, Moses, David and others whose lives can teach us patient endurance (if we are willing to learn). And I pray that this anger will be transformed into loving energy.

A Day with Light

Thursday was a busy one. I drove David to school, and caught the ferry to the city for a day of meetings at Seattle Children's Hospital. You know by now that my heart is full of gratitude for the people who work there, who helped to bring light into the darkness of our child's cancer journey. Well, Thursday was full of light.

First, I stopped at the volunteer office, to register a batch of quilts and a huge bag of Auntie Nadine's knitted hats, scarves and sweaters into the donation system. I filled out the forms, talked about Katie with the kind-hearted volunteers (showed her photo, too) and then took the donations up to the SCCA (Seattle Cancer Care Alliance) floor. I met Julie and Ashley (ChildLife Specialists) at their office and gave them the quilts. I took hats to the SCCA ward (and hugged one of the nurses who took care of Katie) and hats to SCCA clinic (and hugged another of the nurses who took care of Katie). Then it was time to go back to the ChildLife office and get ready for a photo shoot.

Seattle Children's Hospital puts out a magazine called "Connections," several times a year. It's a great magazine that gives updates on what's new at the hospital. David and I were interviewed for an article about ChildLife (it will come out in the Winter issue), and it required a photo of us with Julie. Unfortunately, David couldn't make it, so they got me...and a batch of the quilts! It turned out to be a wonderful  opportunity to talk about Katie's Comforters Guild, while highlighting the essential role that ChildLife played in helping us.

As we were posing and trying to look natural (with me wishing I had had braces when I was young), laughing and chatting, I said to the editor of the magazine, point-blank: May I ask you a favor? Will you please mention Katie's Comforters Guild somewhere in the article? She said, Yes, and asked me to tell her about it. She said she would use the info in the photo caption...so I am now filled with hope about that. Part of the fun was seeing her (and the photographer's) response to the quilts. They wanted to see each one, hear about them, touch them, and look at the combinations of fabrics. They chose their personal favorites; they engaged with the idea and the physical reality of the quilts. That made me very happy.

After the photo shoot, Julie and I returned to her office, where we reviewed her comments on a book that I am working on for adolescents and teens who have cancer. She was full of insightful, concrete ideas. We weren't able to finish, because I had another meeting in another part of the hospital (for the Guild)...so I ran off to that meeting. Down to the coffee shop on the 1st floor, to meet with the President of the Guild Association and a board member about progress on Katie's Comforters Guild, and our next steps. It was very energizing and exciting to talk about it with them. Their experience is vitally important to my learning process and to making this new, "virtual guild" (read:  no meetings!) into a thriving entity.

In the midst of this meeting, in the doorway of the coffee shop, I saw Dr. C., the genius heart surgeon who performed part of Katie's surgery. My attention veered instantly away from the meeting, to him. I love Katie's surgeons. How can I describe the love I have for the two men (and their supporting staff) who took the enormous tumor out of Katie's abdomen, and gave her a second chance at life? It's deep, passionate and real. Dr. C. came over to our table to chat.

I jumped up to hug him, and we all started to talk. I asked him if he remembered Katie's surgery (he performs A LOT of surgeries). He told me, Yes, that he had just been talking about it a few days ago. He said he was being interviewed for a book, and that the author asked him if he goes home each night and thinks about how amazing his day was, doing these surgeries. Dr. C. said, No, he doesn't, because that's his job; it's what he does. Apparently, Dr. W. (Katie's chief surgeon, who was in charge of, and performed most of, the 18-hour surgery) was standing nearby during this interview, and Dr. C. told the author that there are some surgeries that he and Dr. W.  have done together that they will never forget; Katie's was one of them. I showed him the photographs of her after she recovered, just being a kid and enjoying life.

Dr. C. asked me how I am doing. I told him that doing things like the quilt project/guild helps me; that it feels good to try to bring some light to the darkness. He told me that he often uses the glassybaby candle that we gave him (we gave them to many staff members as a "thank you" when we left the hospital), and he said that the glassybaby is still bringing light. That was a lovely thing to say, and it made me happy.

After that meeting was over, I went back upstairs to finish discussing the book with ChildLife. More great input and insight from Julie and Ashley. Lots of ideas, notes and ways to go forward. Then I got into my car and drove to Ronald McDonald House to donate another huge bag of knitted hats, scarves and sweaters; then back to the ferry to come home.

That was a big day, for me. Lots of progress, lots of openings, lots of light. I did realize that I spend so much time alone that I have now become something of an interrupter. UGH. Otherwise, it was a great day, thanks to everyone who is supporting these efforts. They help to make my life more worthwile.

In a Nutshell: The Story of Katie's Cancer Journey

For those of you who are new here, or who haven't gone back to read the first postings of this blog, I am posting here the "nutshell" version of Katie's cancer journey. If you want the day by day information of that journey, there is more detail in the Journal section at www.caringbridge.org/visit/katiegerstenberger.

On Oct. 10, 2006, at the age of 11 and a half years, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue).


Prior to this, she was the picture of health, and had had a busy, healthy, happy summer, hiking, participating in drama camp, taking a trip to Vancouver, B.C. to see "Phantom of the Opera" on stage, and riding a wild roller coaster at a theme park, among other activities. Katie had just started middle school (6th grade) at a private academy for artistically-inclined young people.

She was diagnosed with a neuroblastoma tumor in her abdomen and heart. Later, the diagnosis was revised to undifferentiated carcinoma (and finally, to adrenocortical carcinoma).

Pathology (using electron microscopy) led to the new diagnosis; experts at St. Jude's Hospital were consulted. Her chemo regimen was changed to address a carcinoma.

We moved from our home to Ronald McDonald House in Seattle, and there we spent the next 3 months in and out of the hospital for her chemotherapy. Each night, Katie had one parent with her in the hospital, while the other spent the night with David at RMcDH. We were together as much as possible, supporting her, with David moving (for 9th grade) to the Hutch School in Seattle, and Gregg shortening his work days.

In January, after 5 rounds of chemo, we went home for a much-needed rest, before returning to the hospital (and moving back to Ronald McDonald House) for Katie's surgery, which took place Feb. 21-22, 2007. Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hours to remove the tumor; pathology tests showed that it was indeed adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery! That gift inspired 3 blood drives in our community to (more than) replace the blood that Katie used.

Katie spent 3 weeks in Cardiac Intensive Care Unit, recuperating (the incision couldn't be closed for 2 weeks). She then moved to the surgery ward, & spent 3 more weeks recovering there, with physical therapy and rest helping her to grow stronger. On 4/1/07, we were allowed to go home for good!

In early May, Katie had a PET scan which showed microscopic bits of cancer in her upper back (nothing emergent). Since the doctors had also found microscopic signs of cancer in her liver, scans were scheduled every 3 months (it was considered by doctors to be a slow-growing cancer). The theory was that whatever might grow would be found in plenty of time (and surgically removed, if it became a problem). Katie started a regimen of oral chemotherapy called Mitotane to help prevent the cancer from growing. It gave her flu-like symptoms, but she was still able to go outdoors and have fun.

In June, the kids went to Camp Goodtimes, and had a blast. They were starting other summer activities when Katie began to have pain in her lower back & legs. She had pain relief medicine, massage & physical therapy, but the pain increased in strength and frequency.

A CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, the Mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.

Katie wrote her will, had in-depth conversations about her situation, and watched a lot of TV and movies. Close friends and family visited her. She had about two weeks of increasing weakness, when it became difficult for her to walk or stand. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.

Please accept our thanks for your love, prayers & support. We appreciate every one of you.

Marriage in the Pressure Cooker

I have been thinking about marriage. Since our marriage is now in its 18th year, it is different from a new marriage. Living in the aftermath of Katie’s cancer and her passing, the marriage has changed and weathered a great deal.

It seems to me that in marriage, there is me, and there is you, and then there is “us.” Me plus you equals “us,” and me plus you plus our children equals another “us;” in our case, “the four of us,” and now, after Katie's passing, “the three of us.”

From what I’ve observed, some couples never move from "me" and "you" to become “us.” While lots of people can rub along just fine this way, when enormous stress or life-shattering events occur, it’s very helpful to have “us” as a place of refuge.

When we moved into Ronald McDonald House (RMcDH) to be near Children’s Hospital, we moved from a 3-bedroom, 2.5 bath home into a one-room, one-bath space. We shared a communal kitchen & pantry, living room, computer room, etc. with other families. David, Katie, Gregg & I all slept in the same room, the room where we also lounged, watched TV, used our computer, prepared and administered medication and got dressed. We could hear each other’s breathing in the night; we could hear when someone got up to use the bathroom. We could also hear other families walking down the hallway.

For the most part, the families we met were surprisingly happy, considering the circumstances we were all facing. All of the families were at RMcDH because one of their children had a life-threatening illness, and usually it was cancer. Most of us had given up the comforts of home; siblings had either left their regular school& moved to a new one near the hospital, or stayed where they were, which involved splitting up the family. Some parents had given up their jobs in order to be available as full-time caregiver to the patient; for those families, this meant a big disruption in income, and sometimes, financial & insurance worries. All of us were unsure of how (and when) this situation was going to end. We were together in a land of uncertainty, all in the same wagon, doing the best that we could for our families.

I remember a night when, in the wee hours, Katie woke up and found that her feeding tube had leaked formula into her bed. She awakened Gregg & me, and we changed her sheets (David slept through it, lights and all). As we were putting the fresh sheets on her bed, I heard screaming and swearing in the hallway outside of our door. I also heard banging and crashing sounds. I went to the door and peeked through the peephole, but couldn’t see anything. A few seconds later, a flash of bare fanny crossed my field of vision: the back of a person who was running down the hall, clutching what looked like a bedspread. My immediate thought was, “Oh, that poor lady. The stress has got to her, and she has cracked; totally understandable.” In other words, I assumed she was one of the residents of the House, the parent of a critically sick child, like us.

The next day, we learned that she was, in fact, a lady who had a mental illness & lived nearby, who was mistakenly let into RMcDH by a newly-hired security guard. She tore several of the handmade art quilts off of the walls and broke some of the furniture in the common area before she was stopped. I felt compassion for her, but the part that struck me funny later was that I thought her behavior was perfectly reasonable, under the circumstances. I thought she was one of us!

During that time of unprecedented stress, we grew in compassion toward ourselves and others. You couldn’t help it; your heart just opened as you witnessed the suffering of your fellow beings. We didn’t turn into saints, but we did grow. It’s not just about me getting what I want; that’s finished, in one sense, forever. I didn’t get what I wanted, and in this case, I never will; I will never get to see or hold Katie again, until I die. Learning to accept that is an ongoing process, & it is maturing my heart.

There are statistics that people often quote about the breaking up of families after the death of a child (and other life-altering events). I can understand why families fall apart, just as I can easily see why people engage in over-eating, gambling, drinking, affairs, over-work…anything that can numb the senses is understandable, when the pain is so debilitating and consuming that you want to do anything to make it stop. But of course, those behaviors do not stop the pain; it is still waiting for us, when we have finished distracting ourselves, and perhaps such behavior has even added damage to the situation.

However, it can play out another way: stress can forge greater strength in a family. It can bring out better qualities than we knew we had. We suffered, we disagreed, we were fatigued, we misunderstood, we fell short…but we did our best under the circumstances, for Katie and for one another. We laugh at ourselves, and at life, more freely now. We have more empathy for others; we talk more. We give more leeway, more “benefit of the doubt” to one another. Gregg, David, Katie and I are now “us,” more profoundly than ever, as are Gregg, David and I, as are Gregg & I. Our bonds were forged & became stronger in the furnace of adversity. That is one blessing for which to be thankful, in the midst of this pain and unspeakable loss.

You can also find this posting over at Hopeful Parents.