LilyLou.nl

The turkey has been ordered: we are getting ready for the holiday season! Next week we will celebrate Thanksgiving with our family, one week later Sinterklaas will visit all Dutch kids with gifts, and the week after we will decorate our Xmas tree. Lily Lou is doing fine, and her recent check-ups were uneventful. She is very much looking forward to the holiday season and has urged me to make another jibjab Xmas video:

On March 18 it was 2 years ago that Lily Lou received her new bone marrow from a generous anonymous donor. Today she celebrated this happy occasion with her daddy and her friends in amusement park Efteling. They had a great time!!!

Best wishes for 2011! We visited London for 2 days between Xmas and New Year’s Eve, went to see the musical Mamma Mia! Xmas break was great, it was hard to get back into the school rhythm. Earlier this week we visited the hematologist who was more than happy to see how great Lily Lou is doing, her lab was excellent. Lily Lou is busy with school, field hockey and the last few swimming classes before she will receive her Diploma C (advanced swimmer’s diploma). Life is good!

Wow, time flies by so quickly!
Fall break was short but sweet: we spent two days in a vacation home next to the Efteling, a big fairytale amusement park in The Netherlands, and we had a lot of fun. Lily Lou has no more fear for rollercoasters and had a blast!
In early November we attended a Dutch FA family day and met a lot of other Dutch FA families: there were in total over 35 adults (mostly parents, 2 adult FA patients) and a lot of kids. The adults exchanged experiences and listened to various speakers, while the children were entertained elsewhere. A lot of information was given, especially on the necessity of oral screening for cancer. Two experts from Germany (Ralf Dietrich and Eunike Velleuer) also attended the meeting and took mouth swap samples after the meeting from several FA patients. Lily Lou and her sisters found the day a bit boring, although Lily lou really liked it to finally meet the FA girl who had her transplant on the same day and in the same transplant unit.
Later in November Lily Lou visited the ENT doctor who put a scope in her nose all the way down to her vocal cords, but Lily Lou did great! She remained calm and in control all the time, we are very very proud of her!!! No suspicious lesions were found so we’ll see the ENT doctor again in February.
Last weekend Saint Nicholas (a distant relative of Santa) celebrated his birthday and visited our home to leave gifts for everybody on our doorstep. Lily Lou in particular likes the little tricycle that her baby sister Rosie received from Saint Nic! And now we are ready for X-mas and intend to buy our tree on Saturday. lily lou made yet another X-mas movie for you all to enjoy:

Happy holidays!

Hi there! Just a quick update to let you know all is well. Lily Lou is adjusting well to her new class, but still does not like to go to school :-S Luckily, fall break starts in less than 2 weeks, and Lily Lou is counting down!
Lily Lou has also started playing field hockey a few weeks ago, who would have dreamed of that 1 year ago? We’ll take pictures when she will be playing her first official competition game this upcoming Saturday!

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!