LilyLou.nl

Lily Lou celebrated her 8th birthday on August 2nd together with her sisters, parents, opa Kees & Oma Bos, and good friends on our favorite vacation destination: Ameland, an island in the North of The Netherlands. There was cake, lots of presents, and a BBQ party in the backyard of the summer house. We had a great time spending our summer break at the sea side, and wished it would last forever.
After our summer trip, Lily Lou visited the ENT doctor for the first time for a screening of her hearing and her mouth, nose and throat. She did great: her hearing was good, and her mouth and nose looked just fine. From now on she will visit the ENT doctor 4 times a year to screen for suspicious lesions that may be precancerous, since FA patients have an increased risk of cancer of the oral cavity and throat. After the visit to the doctor we drove to relatives to pick up a sweet little kitten that we named Loesje, she is absolutely adorable!
Then last weekend our friends the Silversteins from Lenox, MA, visited us and Lily Lou had a great time with her friends Evan and Ryan. Unfortunately, we’re now back to real life: school has started again. Lily Lou is staying one more year in the same grade, because due to all the hospitalizations in the past 2 years she was unable to keep up with her class. Luckily she already knew some of the children in her new class from preschool, and one of her friends who lives around the corner is also in her new class, so she is adjusting well. And school is super easy right now!

Hi there!
It has been a while, no news = good news. The past month was very busy for the De Groot family, but as of today all school events (4 day walking event, musical, BBQ, teachers day, annual school party, Michelle’s farewell parties (she is entering high school after summer), etc etc) and family events (De Groot family weekend, Bdays, BBQs etc etc etc) are over and we can start summer break & relax.
Lily Lou passed her second swimming degree (diploma B) and this time not only her sisters and Fleur but also her daddy joined her in the pool (fully dressed) to celebrate another landmark in Lily Lou’s recovery. Also, Lily Lou’s hair has grown so well that she is now able to wear it in a ponytail and is very proud of it! In the beginning of June we were a bit worried because Lily Lou seemed very tired, had trouble riding her bike to school, developed an infection, and seemed to bruise more easily. We were relieved to find out at our early visit to the hematologist that her lab is completely normal. Perhaps it was just the busy month of June….
We wish everybody a great summer break!
PS For all Dutch-speaking FA-patients and FA-families: check out www.fanconianemie.nl for more info on FA and the plans of the Dutch FA working group

All is well here: we celebrated Rosie’s 1st birthday on Ibiza and had a great time. Lily Lou is doing well, no medical news. Spring break was good and long (2 weeks) and it was hard to go back to school. Five more weeks until summer break!

Just a brief update on how Lily Lou is doing: simply great! Last month she learned how to ride a bike (a birthday present to her father who diligently has been running after her, holding on to her bike, trying to teach her the basics of biking) and last week she started biking to and from school, very impressive!!! We are looking forward to a great spring break, starting with Queensday -a national holiday in The netherlands celebrating the queen’s birthday- and followed by 2 weeks of vacation!

We reached another magical milestone: 1 year has passed since Lily Lou received her new pink bone marrow! We are delighted that Lily Lou continues to do great and is enjoying every single day with lots of energy. Lily Lou’s generous bone marrow donor has given her excellent stem cells that are doing a great job!!!
To celebrate the occasion we went disco bowling with Lily Lou’s class mates and teachers. They all had a great time ( Lily Lou’s bowling party ) and managed to raise 600 (!) Euros for KiKa (a Dutch charity that fights cancer in kids).

Yesterday evening Lily Lou was on Dutch national TV in a program about the University Hospital in Utrecht. Click here to watch the show (sorry, it is in Dutch!):
Lily Lou in episode of Afslag UMC Utrecht

The new year has started well: first of all Lily Lou is still doing great. This morning the hematologist was very pleased at Lily Lou’s check-up and he announced: transplant succesful, CU in 6 months! Lily Lou’s lab was all in normal range and she is growing very well, also within normal range. That is a relief, since most Fanconi kids remain petite. But not Lily Lou who has grown another 2 inches in the past 6 months!
Lily Lou is also picking up her schoolwork very well, her reading is improving every day. She even starts to enjoy it !
On February 9 19:25 Lily Lou will be in a Dutch television program (Afslag UMC Utrecht; Nederland 1) about the Utrecht University Hospital, we’ll post the link to that program as soon as it is available online. Finally, February 20 through 27 we plan to visit Lenox to meet with friends and ski at Butternut!! We cannot wait to leave!!!

Xmas break is almost here and we are ready! Check out our Xmas season greetings clip:
HAPPY HOLIDAYS from the De Groot family!!!

Eight months and 1 week post-transplant and still going strong! Lily Lou continues to amaze us by the fast uncomplicated recovery from her stem cell transplantation. The last check-up in Utrecht was good: her lab is great. They filmed us for a Dutch television program while we were visiting the hematologist, the eye doctor, and the researcher who took cell samples from Lily Lou’s mouth for future research purposes (Fanconi anemia patients are at increased risk of cancer of the mouth and throat). The TV program will be broadcasted in February 2010 and we’ll post the link to the program in due time. Besides an ear infection Lily Lou has had a good month: her grades were surprisingly good, and she decided to no longer wear her buff (headwear) to school since her hair is growing back fast (she looks like Tinkerbell, very cute).
Thanksgiving weekend is coming up and we sure have a lot to be thankful for: the generous anonymous donor who gave Lily Lou a second chance to live life like a normal child (she sure is bouncing around these days!), the great care at the Wilhelmina Children’s Hospital during the transplant, the continued support from our family, friends, colleagues, school, and let’s not forget our latest addition to the family: little Rosie who always has a smile on her little face. We want to wish all our American friends a Happy Thanksgiving!