Tuesday, May 6, 2008

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.


Susan said...

I have to say - it made me feel better to read about your experiences at the RMD House in Seattle. We had many stays at the RMD House in another big city. Some were 2 weeks stays - the longest 3 months. It was not a nice place to be. By the time of our last stay they had a nice living room. The staff would come yell at us if we had the kids in there even if they were just being calm. They told us kids weren't allowed even though the CEO himself told us they were. The front desk people acted like you asked for a million dollars if you dared ask for toilet paper or an extra pillow. Then, it would take hours for it to get to your room - if it ever did. I could go on and on.... it was really such a shame for this to be the case but it was. I guess I am still angry about it!

Anyway - I am glad it was an exception to the rule and that your stay was something that was a big support to you.

karengberger said...

This makes me sad. It doesn't sound like the purpose/aim of RMcDH is being carried out there. Did you ever tell the board of directors about this? I think they would want to know. It sounds as if the management needs training (or changing) at the house you are describing.
Seattle has one of the largest RMcD Houses in the country. The original one is older than the one we were in, and they have a 3rd house, with apartments, for the BMT families. There are so many volunteer groups who come in to cook for the families, and I can't praise the Thanksgiving and Christmas dinners highly enough. Imagine volunteering to spend those holidays cooking for strangers! We were so moved by the love that went into it.
I hope the House in your area gets better into the spirit of their mission. Maybe your voice can help.

Sheri said...

Did you know I researched thoroughly taking the whole family to The Hutch for Joseph's treatment? I just realized today reading your blog that we would have been there at some of the same times if I had. I talked to them (The Hutch) through email and on the phone and in the end decided not to uproot the family and take them so far away. Looks like we were destined to be friends no matter which way I went on that decision.

I am so sad today and am reading a lot of sadness in your post, though I cannot tell if it is me I am reading or you. Probably some of both of us.

You are a dear friend and I am grateful for you.

The Engine of the Family said...

The Ronald McDonald House is such a great organization. I help run the Enrique Iglesias fan club site and every year we collect donations for a charity. We have done Ronald McDonald a few times and they always send us a thank you letter in return.
We have a wonderful Children's Hospital in St. Paul, Minnesota. My niece was born with complications, that us as a family believe were caused by an incompetent doctor at her birth. Children's Hospital is a Godsend for my sister and my niece. They are a very caring facility.
I hope you have happy days ahead of you, although I can only imagine the pain you must feel everyday. Take care! :)

The Engine of the Family said...

Thank you! Is Evan the most handsome guy ever?! Breaks my heart to read all the stories, especially the kids. Yes, the University of Minnesota and Children's Hospital are wonderful...along with the Mayo Clinic in Rochester. We are so blessed to have so many wonderful places to get great care. My aunt is currently undergoing cancer treatment at the Mayo clinic.
I don't work on Enrique's official site, but his main U.S. fan club. I've been a fan of his for quite awhile and am friends with the main girl that runs the club, so I help out with things as much as I can. It's a fun hobby!

Karla W. said...

When Sam was first diagnosed we looked at RMH as a temporary place to stay(1week tops) and started looking for an appartment of some sort to stay at instead. We just didn't like the idea of communal living...boy were we wrong.

The cost of living in Seattle is just too expensive and both Mandi and Mike developed close friendships with others at RMH.

It was a wonderful way to get support and give support and just a sharing of information and love. It was also wonderful that volunteers came in and prepared meals (evn though we all got sick of pizza, tacos and spagetti) and activities.

In the end we were so thankful to have RMH there to bring all of us families together.

Katie said...

I remember all to well the perculiar feeling of spending the holidays in a house that isn't your own...thanks for checking in today, without judgement or question-God Bless.

Smileygirl said...

One little tidbit I picked up from reading this entry (as well as others) is that even during unpleasant days when Katie was feeling ill, you managed to find something positive out of these moments and build lasting memories. The little party with Julie and Tanya in Katie's bedroom was a special gift for all of you.