A Visit to Children's and Ronald McDonald House

Today, I took more quilts to Children's Hospital in Seattle. I went by myself this time, which I haven't done so far, and it was okay. These trips always seem to cause a little catch in my throat, or a flashback that takes the wind out of me for a few seconds, but they are worth it.

Today's flashback occurred when I approached Mary Gates Drive, which winds between the U of W playing fields and the Laurelhurst neighborhood near the hospital. I recall taking Katie to one of many Hem-Onc Clinic appointments last spring, when she got sick in the car, and I pulled over to the side of the road on Mary Gates Drive. After Katie finished being sick, I threw the contents of the bucket into the grass in an empty lot, rinsed it out with water, and tried to help her feel better. Just going to clinic can make kids have "anticipatory nausea," and they feel so miserable. Our lives were filled with such moments during treatment, and after surgery. We learned to always, always have a "pink bucket" handy. I still have a few of them in the garage, and for some reason, I am sentimental about them; I haven't been able to throw them away. Crazy.

Julie (Childlife) and Tanya (Social Work) met me at the "Whale" entrance, and together we pulled the wagon filled with 17 quilts and numerous hats to Julie's office. There we had a good chance to visit after we had unloaded the quilts. Julie and Tanya are part of Katie's (and our) team, two people who she trusted from the beginning of the nightmare, and all the way through it. They provided some of the greatest support that we received, well beyond what we could have imagined was available to us. They helped me to stay reasonably sane throughout the most stressful and difficult time of my life.

After Katie received her final diagnosis, we invited Julie and Tanya to visit us in our home. They hadn't had a chance to help Katie adjust to the bad news on the day that it came, and they wanted to offer more support. We wanted to share a meal with them on "our turf," and to offer them the gift of hospitality, letting them see us in our home (real) environment. It was a blessed visit. Both David and Katie had time alone with each of them. We had fellowship. Katie showed them all through the house; David and I took them to the beach. Katie decided that she wanted to be on her bed, so she asked that we bring dinner up to her room. We did, and had a little "party" up there. It was a day that I will always remember as a gift to our family.

After visiting with Julie and Tanya, I stopped by the ICU and the Hem-Onc Clinic, and then needed to move along to my next stop, which was Ronald McDonald House.

I wish I had photographed the cherry trees. They are in riotous bloom all along the street. It is a magical sight, with clouds of blossoms on the branches and a scattering of pink all over the sidewalks. I remember looking at those trees every day last spring, out of the window of Katie's room on the surgical recovery floor.

I delivered hats and sweaters to RMcD House today. They were made by Gregg's Aunt Nadine, who is a knitter. I mean, she is a non-stop knitter. She invited us to come to her house and choose among some hats and sweaters that she wanted to donate. Last night, we went out to see her and had a great visit, and we took a huge bag of her handmade items home. We didn't even make a dent in her supply; Auntie has several large, moving-size boxes of sweaters and hats. She invited us to come back and do it again, and we will. Here is a photo of Lauren, the house manager, holding up some of Nadine's sweaters in front of the fireplace in the RMcD House lobby.

When we first entered the hospital, we thought we were there just for tests; we had no idea that we would be checking in. Once we were told the seriousness of Katie's illness, and that there was no known cure for it, the doctors also told us that they would not allow her to leave the hospital, since her tumor was "friable" (flaky), and a piece of it could break off, go into her heart or lungs, and kill her --at any time (we lived with this stress from early October, 2006 until her surgery, in late February, 2007).

After consulting with other experts, Katie's doctors decided to try to treat this rare tumor with chemotherapy, using a protocol which was developed by doctors at St. Jude's Hospital. The immediate point was to attempt to stabilize the tumor, and it was hoped that the chemo would shrink it, so that the tumor could be surgically removed. The other important hope with chemo was to try to kill the cancer; five rounds did stabilize the tumor enough for Katie to have her surgery, but it did not shrink it, or kill it. (It took Dr. Waldhausen, Dr. Cohen and their team 18 hours to take it out.)

In order to be together as a family as much as possible, we decided that David and Gregg would move into RMcD House. They were able to be with Katie and me for dinner and more of the evening, since the House was only a couple of blocks from Children's Hospital. David was even able to join me for breakfast at the hospital on his way to school, on some days. This was much better than for them to have to commute 1.5 hours each way to and from Children's each day. Meals were provided several nights a week at RMcD House; we had a very comfortable room with a private bath, a table and 2 chairs, 2 queen sized beds and a window-seat bed, phone, TV, VCR and DVD player. There were 2 communal kitchens, so we had our own cupboard and mini-refrigerator, and were welcome to share the food in the pantry.

Our home is too far from the hospital for us to be able get Katie to the ER in the event of an emergency, so taking her home was out of the question. However, after about 6 weeks of treatment and observation in the hospital, the team at Children's decided that Katie was stable enough to stay at RMcD House, so we were all able to live together in that one room, in between chemo treatment weeks. Eventually, the doctors even let us make very brief visits home with Katie, but we really lived at RMcD House. We had Thanksgiving dinner at RMcD House, as well as Christmas dinner. Here are photos from Thanksgiving 2006, with my side of the family.

The lobby of the house is very cozy and comfortable. We liked to sit by the fireplace there. They have magazines, toys, an aquarium, and soft chairs and seating areas so it feels more like a living room than a lobby.

Ronald McDonald House is truly a haven for families with critically ill children. It made our life in Seattle so much better, for all four of us. We are thankful to the donors and the volunteers who created such a wonderful place, and helped us feel welcome and sheltered there.