1st Infusion under our belt . . .. .

Well, we made it! Grace and I left our house about 6:30 this morning, and got to Seattle about 7:30. We even had time for a short detour to Starbucks in U-Village!! We arrived at the hospital about 8:00 and we were both quite nervous. The nurses are fabulous, however, and we soon felt more at ease. We received the good news today that our infusions will actually take more like 2 hours (rather than the 4-6 hours we were previously told.) However, the whole process takes longer than I thought, so a two hour infusion can actually take about 4 hours by the time they get the meds from the pharmacy, apply the numbing cream, find a good vein, put in the line, hang the meds, etc. I'm sure the process will get faster once we're a little more familiar with the routine.

We're home now, and Grace is doing well. She's very irritable, and very hungry. Both of which are side effects of her meds. The appetite is something we will have to control--or at least control what foods she eats, but for today I'm being a little more lenient. The grouchiness, however, is already taking it's toll on me . . . .. ;)

I must say however, that all of this was really put into perspective for me today. As hard as it is, and as overwhelming as all this seems, it is literally NOTHING compared to what so many families are facing. We saw alot of very sick kids today, whose meds are many times stronger and have many more insidious side effects than Grace's, and whose families spend hours and hours every week at Children's Hospital. It was very humbling.

Following are a couple of pictures. One of them is of Grace's lesion to give you an idea of what it looks like, and the other is of her writing in her new journal during the infusion.



Our best to all of you,

Sabrina

Our Bags Are Packed and We're Ready to Go!

Tomorrow is the day. Grace and I spent some time tonight gathering a bag of things for her to do tomorrow. Her Brownie troop has organized a gift basket for her, which will be delivered every Wednesday night in anticipation of her Thursday treatments. Tonight's basket contained High School Musical stickers, markers, a blank journal and other goodies. Grace is thrilled, and Rob and I are truly touched at the support our community is showing us. We are so grateful for each of you!

Grace is handling everything just fine--at least on the outside. I know she is nervous, but she seems to be doing OK. Tonight was her musical performance at school, which I'm sure helped to take her mind off of things. We'll all be glad to get through tomorrow. It will be easier when we have an idea of the routine of the place and how she will tolerate her medication and the IV in general.

I've packed my bag for the hospital, too. Though I'm thinking it's rather optimistic of me to think I'll get through 4 back issues of Gourmet and Bon Appetit! In a way, I'm looking forward to the time to spend alone with Grace.

I will update tomorrow night with how it went. Please keep up in your thoughts.

By the way, the above picture was taken in February at Grace's birthday party at Libby Lu's. Isn't her smile fantastic?

Just a couple of pictures

Thought you guys might enjoy seeing a couple of pictures. These were taken last week at Children's Hospital when Grace was having her MRI. The one where I'm holding her is before they put her to sleep. We were both a little nervous! The one with the popsicle is taken after she woke up. I really love both of them.

And So It Begins . . . .

I have created this blog to help keep our friends and family apprised of the situation we are facing with Grace. First, a little history . . . . .

About a year ago, Rob and I noticed a "bruise" on Grace's forehead. When we questioned her, she told us that she had hit herself on the forehead with her brush. Though the story seemed odd, we let it go. As time went by, we noticed that the "bruise" wasn't fading, but we really didn't think too much of it.

Last month, when we were in church, I happened to pull Grace's hair back from her forehead, and realized that the "bruise" had spread up into her hairline, and that her hair had fallen out in this area. About this time, we noticed that the surface of the skin was also starting to change, becoming stretched and shiny looking.

I took her to our pediatrician, who told us that he had no idea what it was. He referred us to a dermatologist. When the dermatologist saw her, she told us that it was a type of scleroderma called "en coup de sabre", a French phrase meaing "cut of the sword", so called because this is what the lesion resembles. The condition is very rare, possibly affecting as few as 3 out of every 500,000 children. This began a whirl of blood tests, and specialist visits while we struggled to get to bottom of what this disorder was, and how it would affect our daughter.

Scleroderma literally means "hardening of the skin", and this is what is happening to Grace. The skin and underlying tissues have atrophied, and the disorder has also caused a depression in the skull underneath the lesion. We underwent an MRI earlier this week, and found (Thank God!) that it has not affected the brain tissue underneath, as some of these lesions can. Her bloodwork so far has also been fine, indicating that there is no other organ involvement.

The next part of our journey is treatment. This will involve weekly trips to Children's Hospital for IV infusion therapy. The infusions will contain massive amounts of methylprednisone as well as smaller amounts of methotrexate, which is a chemotherapy drug. Because this is an automimmune disorder, it is treated like many other rheumatological conditions--the main idea being to suppress the body's immune system to stop it from attacking itself.

There is no cure. But we are optimistic that we caught it before any further damage can be done. When Grace is a little older, and depending on how things go, we will consider some kind of reconstructive surgery to fix the indentation, as well as the discoloration if she so chooses. For now, our goal is simply to get throught treatments.

Each infusion will take 4-6 hours, depending on how her body tolerates the medication. The main side effects will be nausea, fatigue (methotrexate) and weight gain (due to the steroids). Some patients also have trouble sleeping, become more irritable, and undergo some mild personality changes.

This journey for us truly begins on Thursday, March 27, with an 8:00 am appointment at the Ambulatory Infusion Center at Children's Hospital and Medical Center in Seattle-about 30 miles from us.

I would like to take a moment to publicly thank all our friends and family for their support as we struggle to learn as much as we can about this. Please feel free to pass the URL of this blog along to anyone you think might be interested and who I may have missed. It is a huge source of stress for Grace to hear me talking about this on the phone, and though I cherish my conversations with each one of you, I am going to try to limit my conversations to the school hours when she is away. In the meantime, I will keep this blog updated--I will have lots of time in the infusion center to do so.

On this Easter weekend, we ask you all to keep us in your prayers. Please pray for strength for our family as we get used to this new routine. Most importantly, please pray that the side effects are minimal, and that Grace tolerates the treatment well so we can get our healthy little girl back.

Rob and I send our love to each of you. You are always in our thoughts.

Praying for our daughter,
Sabrina