Wednesday, January 31, 2007

Mr. Tennis Ball

Mason's eyelashes are completely back, and his eyebrows are almost there. His head is covered by peach fuzz. We call him Mr. Tennis Ball. His temporary line in his arm will come out on Thursday, so he will not have any lines into his body for the first time since August.

On Saturday, he plays his first soccer game in the Annandale Boys and Girls Club league.

Pictures soon!

Monday, January 22, 2007

Out of the hospital

Mason is out of the hospital and busy playing in the fresh couple inches of snow in Arlington.

Friday, January 19, 2007

Stuck in hospital

He still has to wait for a two negative blood cultures and we are not there yet. We have just one. So it appears that we are here for the weekend. He had his PICC line placed today for antibiotics which he likes much better than the IV. He thought it was pretty cool that he could see his heart and lungs on the monitor in the procedure room where it was placed. The doctors said he was an excellent patient and talked to them the whole time despite being doped up on Versed and Fetanyl.

Wednesday, January 17, 2007

In the hospital

We are in the hospital for a few days. The blood draws from the other night turned out positive for bacteria. We came in today for his antibiotic dose and they decided to admit him. The good news is they will take out his Broviac line sooner. So he will have a minor surgery tomm to remove it. We will stay until he has two negative blood cultures, so he will probably get out by Saturday. We are at 202-884-4369

Tuesday, January 16, 2007


Mason has been taking the low-dose chemo for almost two weeks. He takes the three pills pretty easily with apple juice. At first his balance seemed to be affected by the chemo. He fell at least 2 to 3 times a day the first week. It was heart stopping. We almost put a helmet on him! The Accutane makes his skin dry and his nose peels and he has some dry skin around his mouth. He has some nausea but not much and the meds take care of that.

We had a trip to the emergency room last night for fever. They drew blood to check for bacteria(which was negative), got some antibiotics, and we were able to come home. Mason was happy he did not have to go to school today and got to hang out and play school with Francisca. Mommy slept as it was a late night, and she needed a serious nap by mid-day.

The next MRI is scheduled for March 7. It is tough for all of us not to worry too much and keep a normal life going. We manage as best we can, play lots of soccer and just try our best to enjoy every day we have together as a family.

Tuesday, January 02, 2007

The next steps

After much research (with limited data) and many meetings with doctors, we have decided to postpone radiation as long as possible and will do low-dose chemo for at least seven months. We will save radiation for a recurrence, if there is one. We imagine that folks are wondering about his prognosis. The data is sparse, but the survival rate for kids is his situation who follow the chemotherapy path is probably between 33% and 50%. The fact that he had a total tumor resection, and optimal response to the chemotherapy (i.e., no disease at mid-term and final MRI) is good, and may well push him closer to the 50% mark. In one study about 17% of kids did not even respond completely to the chemo. We embarked on this process with trying to maintain the maximum quality of life for him for a long as possible, hopefully a normal lifetime. And we will continue to work with the doctors to make sure that happens.

He will have an MRI every three months and visits to the clinic about every two weeks at first, then once a month. His hair is already starting to grow back and he should be able to resume most activity, as we are told that the side effects of the low-dose chemo are negligible. The doctors will take out his Broviac catheter in February if all goes well. Mason is not too sure about that part as that would require them to draw blood from his arm.

Then we just wait. The most critical time is the first 18 months post chemo for recurrence. We will just have to watch him closely and hope that nothing comes back.

A wonderful holiday

With Uncle Matt celebrating!

We had a wonderful holiday with family and cousins in NY. After an intense week prior to Christmas with the MRI, spinal tap and three meetings with doctors for opinions and second and third opinions we were ready for a break and some fn with Santa. Although NY had no snow, besides a few sprinkles, we ate too well and spent alot of time playing with cousins. AT times it was bittersweet to see them so happy, but one has to take a deep breath and enjoy the moment. They deserved alot of laughs and love after the last six months. Thanks for all the holiday wishes and cards. The boys had fun opening all the cards.

So we came back today to reality and the boys go back to school tomm.
With Francisca at Nana's house showing off
their Germany soccer outfits