Monday, August 21, 2006

Round two... ding...

Okay, so time to post continues to be scarce. Here's the latest, with pictures of course...

On August 9th, Sophie participated in a fundraiser for the long-term cancer survivor program at the Lombardi Center at GUH. A local Hundai dealer, Don Byers, donated a car to the Pediatric Cancer Foundation to raise awareness and funds for cancer research dedicated to the after affects of cancer treatments and the life that continues once treatment has ended. The car will be traveling along the east coast with an image of Sophie's handprint, along with her name and age. See the picture with the door the kid stamped with washable ink on-site that day, and a picture of the entire group. Hundai and the Foundation presented a check to the Center for $45k to cover expenses related to the first ever national conference on life after treatment. It was a joy to be a part of this important event!
Later that afternoon, Sophie got her first haircut - ever!!! Her beautiful long flaxen locks became an adorable little flippy cut that seemed to age her a full year. My heart melted a bit, but we got through it... with an envelope full of hair of course.

It seems the haircut was just in time! On Thursday, Sophie made counts again (her white blood cells were high enough to not be classified as neutropenic and the risk of infection was reduced). This enabled us to go to the Montgomery County Agricultural Fair on Sunday. It was a hot day, and just as we began to visit the animals, we noticed that Sophie's hair began to fall out. I was interested to read the reason for the hair loss for chemo patients. Apparently, the drugs target rapidly producing cells. This includes duplicating cancer cells as well as hair follicles. As the cells are unable to reproduce, the follicle temporarily shuts down and the hair just slips away. Her hair is quite a bit thinner with some visible bald spots at the crown, but she's still adorable!

Zach had a great time at the fair, completely oblivious to our emotions on the hair loss. Check out his antics. Soph didn't get to go on any rides, but she did win a prize at the duckie game!

In addition to the hair loss, her face has also begun to see the effect of the medication, primarily the steroids. Her cheeks are chubby as can be - again, adorable! I may be biased so see for yourself, I think you'll agree. The less adorable part of the steroids are changes in her sleeping and eating habits. She's a hyperactive junk-food junkie right now. She's sworn off decent sleep, that is no reasonable nap, and she wakes up in the middle of the night, sometimes for a few hours. It's almost like having new born again, except when I bring Sophie to bed now, she flails around much more (and there's much more of her to do so) and beats be about the neck and shoulders with her feet. Daddy gets all the cuddly love and I get bruises! (That's okay, Zach cuddles with me while trying for a TKO with Dad, so we're kinda even on that front). Those girls love their Daddies don't they?

So last Thursday, August 17, Sophie had her second cycle of chemo. Cyclophosphamide, Doxorubicin, and Carboplatin ( It's kinda freaky that I was able to jot those down here without looking, including the spelling - yikes!). This was supposed to be a tough round as the drugs were administered in succession over about 4 hours. As is becoming usual though, Sophie woke up the next morning dancing and singing to Blues Clues. She did so well we're able to go home early in the afternoon. We only needed to make one stop... to pick up an anti-nausea medication at the pharmacy. The hospital called it in, so it should have take 10 minutes or so and we'd be on our merry way, right? Wrong! First the pharmacy had it in a holding pattern, so when we arrived they actually had to look for it on the computer, then we found that it needed prior approval from our insurance. Well I was worried that the medication Soph was given by IV in the hospital would wear off and we'd have one sick kiddie on our hands, so I said I would pay for it and work out the details later. Well, it seems that 30 of these little pills were going to cost us $930 - HOLY COW! So NOT doing that. We ended up with 3 pills at $105 to get us through the weekend. Everything doctor, insurance company and the pharmacy finally aligned and all is well now. We're literally set for the year in anti-nausea meds!

Sophie begins her new day care last week. These folks are great. It will be difficult not going the Bright Horizons anymore (Zach's last day was last Wednesday), but we have faith that once this is over Sophie will be able to return to BH and her favorite teachers. Sophie can and will stay at the new center until her central line is removed. At least six months, but up to twelve. She's part time now, but hopefully we can begin transitioning to full time soon and I can get back to work at some point.

Next on the blogging agenda is Zach approaching Kindergarten. We had orientation this past Friday with his new teacher Mrs. Nguyen - tomorrow's the big day!!! Stay tuned!

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!

Sunday, August 06, 2006

We haven't fallen off the end of the earth...

...but we have been really busy for the past few weeks! I hadn't realized that is was so long ago that we posted though. So much has happened. Here goes...

The same weekend after the last post, we gave Sophie a little time to be an almost two year old - a giggly romp in the sprinkler helped with the heat, eased some tension, and provided some awesome 'Kodak' moments. This is our calm before the storm.

On Monday, Sophie had a surgical procedure to insert a port into a vein in her neck that extended under the skin to just above her sternum. The device is called a broviac and has two lines, or lumens, that run externally and allow for IV medicines to be administered without having to use needles each time. She receives her chemo therapy through this line as well as a twice daily dose of prednisone, a steroid, and imunoglobluin (IVIG) therapy monthly, both to help stop the neurological problems. More on this in a bit. The next day, Tuesday, Sophie had a spinal tap (they call it a lumbar puncture or LP) to collect a sample of spinal fluid for the clinical trial, and a bone scan to ensure that the cancer had not spread. We remained in-patient until about 10:30pm that night, then rushed home and packed for our trip the following morning.

On July 19, Sophie and Mom traveled to Springfield, IL - via Atlanta, GA and Peoria, IL - to visit the Opsoclonus Myoclonus Ataxia Syndrome specialist, Dr. Pranzatelli (see last post for more on this). The travel was adventurous to say the least, but the trip went well. We landed in Peoria just as a wild storm hit the area. You may have heard about 37 people being killed from the same storm as it hit St. Louis later that night. We survived the crazy turbulence on the plane just before landing, waited the storm out in the Peoria airport (couldn't get to the rental car through the rain and strain line winds) and then drove through the tail - toward the middle - of the storm for an hour and a half from Peoria to Springfield. I have never seen a storm of this magnitude - lightening was hitting the ground on the fields along side the highway. The traffic kept going though, so, so did we - lest we get crushed by one of the many 18-wheelers going 70 mph down the highway. It is notable that Sophie fell asleep about 15 minutes before the plane landed (just before the turbulence) and stayed that way until we pulled into the Ronald McDonald House parking lot about two and a half hours later. That was one pooped little princess!

The rest of the trip was uneventful by comparison. We met Dr. Pranzatelli the next morning and he performed a spinal tap, collecting spinal fluid for special analysis. We made some friends in the recovery room and then took a looksee around scenic (kidding) Springfield - although I couldn't find a place to stop and buy souvenirs, I did manage to get a shot of Lincoln hanging out on a park bench (that was a drive-by picture I might add - okay we were at a traffic light, but I was in the car shooting through the window - no puns intended on the photography lingo, heh)

Upon our safe return, we were able to enjoy a 'normal weekend before starting treatments. Check the next post - hopefully tomorrow for info on the treatments - to keep you from suspense, to keep this short, and to get me to bed before dawn, suffice it to day they are going well. Sophie so far has only the adverse affects of yucky tasting medicine and mouthwash to contend with for now.