Monday, August 07, 2006

Update continued...

Okay last post we had just arrived from Springfield and enjoyed a nice weekend. Tuesday, July 25, Sophie started the IVIG (imunoglobulin) therapy at the Lombardi Clinic at GUH. This is the randomized part of the clinical trial - there was a 50/50 chance that we would get the additional therapy, and we did - woo hoo! The initial treatment is two days of IV infusions that last for 2-3 hours each, then one treatment every 28 days. It's a good thing we link the clinic and the fantastic folks that work there cause we spend a good deal of our week there! These pictures are taken int eh clinic lobby where patients, siblings and parents can enjoy arts and crafts, music, movies, toys, and even video games. It's a lovely, nurturing environment with people to match. Even though we know that there are many other patients and families, we always feel like we are the most important. That is the gift that Lombardi gives us each visit.

We had planned to become inpatient again on Thursday, but Sophie had other plans - she had a mild reaction to the IVIG. With a headache, fever, and nausea, we headed to the pediatric ward (we'll refer to it as C53) late Wednesday night. This was our longest stay yet. After a blood work, an ultrasound and a CT scan, the chemo finally started at 3:30am on Friday along with her first injection of the IV steroid Prednisone. She received two chemo drugs the first day, Carboplatin and Etoposide (VP-16). She received two additional treatments of VP-16 over the following two nights. The Prednisone is two injections daily for at least two months. We're now set up to do these at home too.
In addition to the drugs, IV fluids and an anti-nausea drug were also administered to help ease some immediate side effects. All-in-all Sophie did very well throughout the treatment and continues to be mostly side-affect free and generally happy. Of course, this make us all VERY happy too. We were discharged from the hospital Monday morning, July 31. Sophie's immune system was slightly depressed - she was what is called neutropenic, which generally means that her white blood counts were low and that she is more susceptible to infection. Her body naturally rebounded, but we needed to take some precautions such as keeping her away from sick people, and removing fresh fruits and vegetables from her diet as well as diligent handwashing and food preparation/handling. It sounds worse than it is - she was able to have her beloved bananas, so things worked out well. The picture is from several weeks ago (note the IV in her arm), but her affinity for bananas hasn't changed a bit!

We visited the Clinic last Thursday, August 3rd, and her counts were up so we're able to resume semi-regular operations here at home. We still need to stay away from sick folks and indoor places with lost of people, common sense stuff really - that's not too hard to do though. After the clinic I had the privilege to be interviewed on a local radio station in support of the clinic and the Children's Cancer Foundation that provided the incredible environment at the clinic and in-patient units at GUH. I'll post all of the information when I have it so you can listen on air day.

Yesterday was Zach's 'un-birthday' - he is now officially 5 and a half. We celebrated by going miniature golfing with his cousin Samia who is visiting from Morocco. We all had a BLAST, especially Zach! Sophie was a very enthusiastic spectator, cheering "yeah" or "bravo" each time we got a ball into the hole. Of course the winner was the one with the highest points - on a par 40 course, Zach got a 98, Samia 76, Mike 64 and Allison 50. I'll edit this post with pictures when I get them from Samia's camera.

Well that brings us up-to-date on all happenings. In reflection over the past few weeks all I can see is how lucky we are. We have an amazing bunch of friends and family that through various means have show us incredible support. We are truly touched by your friendship and of course your overwhelming generosity. Each time we think of the precious gifts that you have given us, we are overcome by emotion. Our spirits remain high, our thoughts positive, our hopes high and most of all our love strong. Peace to you all!


N said...

It's great to see you online and all is going well. Sophie's strength is very inspiring. Take care, Jennifer

alycat said...

Thanks so much for the update. We're happy to hear things are going well and that you did get the extra meds in the trial. Your family is in our thoughts.


jackie said...

Keep eating those bananas, Sophie! Zach, we'll see you soon! Glad things are going well. Hope the next course goes as smoothly.

Krisa, Felipe, Lucas, and Elena said...

Hi Allison, just want you to know that you all are in our thoughts and prayers. We hope all the treatments are continuing to go well, with minimal side effects.
The Arzayus'