History

Friday, July 14, 2006 12:09 AM CDT

Here we are with our quarterly update!!! Erin had scans at the end of June and they all are clear again for which we are immeasurably thankful. A full 15 months in remission and it still feels very new and tenuous.

We have been rushing through summer with 2-week trips to NY for antibody therapy tacked on to the beginning and end of our school break. Not to mention that extra 3-day adventure to NY for scans. Nonetheless we are very thankful for the neuroblastoma team at Memorial Sloan Kettering--despite all the travel!

We will continue to do the 3f8 antibodies until March of 2007 unless Erin develops a HAMA (which is the antibody to the 3f8 antibodies she gets as treatment.) Most kids develop the HAMA before they've done the 13 rounds Erin has already completed. However, she shows little sign of developing the HAMA Whether or not it matters is theoretical, so we just keep going to NY every 8 weeks.

Vacation is next--a couple of weeks camping and visiting with family in New Mexico and Colorado.

Then school again.

Sunday, April 16, 2006 10:08 PM CDT

Happy Easter! I guess quarterly updates is about all we can manage these days. We've been blissfully busy being normal--and forgetting to update things. Nonetheless, the latest news for miss Erin is great. We received all clear scans again at the beginning of April.

Erin continues to get 3f8 antibodies at Memorial Sloan Kettering in New York every 8 weeks. It is a great thing, while beginning to get old... Erin keeps on being a tough kid and tries to keep a positive attitude until she can get home to her friends.

We are now beginning the second year of remission/NED (no evidence of disease) and we celebrate that every day.

Friday, December 30, 2005 6:05 PM CST

Merry Christmas and Happy New Year. I seem to manage to get a journal posted once a month. So, here's the latest.

Erin has clean scans! What more could we ask for at Christmastime than that. We have had a wonderfully normal crazy, kid-centered Christmas this year with no travelling.

Erin and I weathered the transit strike in NYC on the Tuesday and Wednesday prior to the holiday--and had no problems walking our 1-1/2 miles straight down 1st avenue to the hospital. Amazingly, all the staff at Memorial Sloan Kettering managed to be at work, so none of our scans or procedures were delayed. In fact, for the first time ever, we actually started a scan early! We buzzed out of there on Wednesday morning and had easy flights home--also early!

Family, friends and lots of good food. Pretty much heaven as far as I am concerned.

Erin and her daddy travel to NY on January 15th for another round of antibody fun. Unfortunately, it means Erin begins treatment on her birthday (the 16th). We'll try to make it up to her beforehand :)

Next scans will be in March (I think), which will bring us a full year in remission. Keep those fingers crossed and those good thoughts and prayers in the air. We are blessed with so many wonderful people in our lives we can begin to thank you all for all you do.

Wednesday, November 23, 2005 2:22 PM CST

Thanksgiving is here! Already!

I couldn't believe it had been two months since I posted here. Evidence of life getting back to normal I guess. Erin's scans in September were good--still clear, still NED.

We are gathering with family for our traditional holiday get-together and most definitely have sooo many things to be thankful for, not the least of which is Erin's good health.

She has finished 10 rounds of 3f8 antibody therapy at Memorial Sloan Kettering in New York. She will return for quarterly scans in December, right before Christmas (ugh). The next round of 3f8s is scheduled for mid-January.

The madness of the holidays await. We plan to enjoy every blessed moment. We hope you do the same.

Sunday, September 11, 2005 9:14 PM CDT

What a long strange journey it has been.

September 11 will always have it's own meaning and will always resound with so many emotions. Yet as we recognize that anniversary, I'm still thinking about how it was just over 2 years ago that Erin began her battle with this stinkin' disease. It was August 25, 2003.

With prayers and her individual tenacity, she has made it to her 2nd anniversary of being diagnosed and is just over 6 months free of disease. While she is still undergoing antibody therapy, she is living a much more normal life than most expected.

Erin is currently with her daddy in NYC having her 9th antibody treatment and undergoing quarterly scans. Despite, or perhaps because of, her being in such great shape, I still worry about the scans coming back with something. But, until I hear otherwise, I will go to work and plan for the future.

Tuesday, August 16, 2005 12:35 AM CDT

For me, today is a major milestone anniversary. It was one year ago today that we spent what was probably the longest day of my life waiting and hoping and praying that our daughter would make it through what turned out to be 9-1/2 hours of surgery to remove that awful neuroblastoma tumor from her precious little body. I will never forget the joy I felt when the doctor called us from the operating room to tell us he had removed "everything he could find." Then we had chinese food.

It was after this surgery that she was finally able to rid herself of the remaining disease in her bones and bone marrow. We hope to celebrate one year of her remission in February!

To all those who have held us up in thoughts and prayers, thank you. I will be smiling today, despite it being my first day back at work after summer break!

Kathy

Tuesday, July 5, 2005 9:25 AM CDT

We're back at MSKCC today after a fun weekend at the beach! Our friends, the Proppers, took us with them to their beach-house in Westerly, RI, where we enjoyed eating seafood, playing on the beach, and going to the waterslide park!

Erin will finish her 8th round of 3f8 treatments this week and we will go home for a much needed 8-week break from treatement.

In general, no news is good news, and we are looking forward to just having some normal, summer vacation weeks with our family.

Wednesday, June 15, 2005 10:58 AM CDT

We returned Saturday from our fabulous Make A Wish trip to Disney World. We had a blast and managed to avoid most of the rain. Both kids enjoyed the rides and the shows and meeting the characters. Erin loved Test Track, which was probably our family favorite, with Dinosaur being a close second. Drew loved all the "mountain" rides--the faster the better. He even got Brian to ride the Tower of Terror ride.

We are trying to rest up and get ready for the rest of summer. Erin came home from our trip with a bit of a cold/sinus infection and has been getting some much needed down-time. She is bouncing back quickly with the help of an antibiotic! She continues to feel great and will attend a week of sleep-away camp at Camp Hope, our area's cancer kid camp.

On June 26 we fly again to New York, and Erin will have another two weeks of antibody treatments. THEN she will get a well-deserved eight weeks off of treatment for the first time since this all began. If she doesn't "HAMA" after this round, she will return for her 9th round of antibodies at the end of August, nearly two years to the day of her original diagnosis.

It is all hard to believe and we are thankful everyday for her life, our lives, and for all of the amazing people who have surrounded us with love.

Kathy

Friday, May 27, 2005 12:36 AM CDT

This page has just been created. Please check back for more updates. No Photos yet, but I'll do that over the weekend!

The news today is good! Erin's CT scans on Wednesday were clear and she is continuing her 3f8 treatments at MSKCC. She has had a long week of treatments and discomfort, but is looking forward to a little down time over the long weekend. Getting a break from treatment on Monday won't be too bad either.

We are looking forward to our Make-a-Wish trip to, of course, DisneyWorld on June 6!

We'll keep this site updated over the summer, but for now, this is a beginning.

Click here to go back to the main page.

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