Celebration of Champions

Yesterday was the annual Celebration of Champions that a fundraising group for the oncology department of Children's Hospital puts on for cancer kids and their families. We went last year, and it was, and continues to be an amazing event. What always astounds me is that they get sponsors to donate $1500, or more, per child that participates in the relay. There are a whole lot of children that participate, and the event grows every year. Each child gets his/her own personal sponsor family and local celebrity. The sponsors and celebrity run a relay race with the child and their family. It really is moving to see and hear everyone on the sidelines clapping and cheering. Madeleine saw some cheerleaders this year and almost stopped running (well, she was really walking) to check them out.

This year, we somehow lucked out and got TWO celebrities! The Padres' Chase Headley and Will Venable were our celebrities this year. I really don't know anything about baseball but it was fun to meet them. Here are some pictures from our day.





Our sponsors were the Deutsch family - a group of the friendliest, nicest people ever.

More sponsor family

Padres player Chase Headley and his wife.

Padres player Will Venable and his girlfriend.

The real celebrities (for Madeleine anyway)

Madeleine has a strange fascination with owls. This owl was a big hit.

Madeleine and her buddy, Cade. This year Cade (also a neuroblastoma survivor) got to be in the "suvivorship" group at the Celebration - a great place to be!

Face painting - she's a kitty cat.

After the Celebration we went home to rest for a couple of hours and then headed back downtown for the sold-out Padres vs. Dodgers baseball game. It was fun to see our celebrities playing and Madeleine and Cade had a wonderful time running around in the grass. It was a true day of celebration.

Best Friends

Madeleine and Sophia

Something to Share

Baby #2 is due mid-August!

Scan results

A couple weeks ago Madeleine had an MIBG scan that shows how much of the tumor is still active. She also had her usual urine test. The doctor finally called today to discuss those results. The scan shows that she still has active tumor. Her VMA/HVA numbers are both up a bit from where they have been. VMA is at 32, and was in the 25-31 range for the last four months. HVA is at 41, the highest it's been since April. All of that means that there is still immature tumor, and that it's probably growing a little (as was seen in December's MRI). The doctor is consulting with the specialist in L.A. that we saw over a year ago, and the neurosurgeon. Thankfully no one thinks that chemo is a good idea at this time as maturing tumor does not respond well to chemo. As long as Madeleine isn't having any symptoms (tumor interfering with her ability to walk and move her leg - which so far isn't a problem), surgery to remove it doesn't really make sense right now either.

Except that the tumor may be interfering with her ability to know when to use the bathroom. I know that she is still young, or right about average, for potty training, but I just feel like something isn't right. She really wants to use the potty, but so far hasn't been able to. After explaining my concerns to her doctor we now have an appointment in a couple weeks to see a neuro-oncologist. He will be able to tell if she has sensation in that area or not. If not, surgery might be a good option, because its not like the tumor is ever going to go away, even after it matures. If it's in the way, it will remain in the way until it is removed.

So, I feel disappointed, and frustrated, and a little angry, that we seem to be in the exact same place that we were last year. The tumor is still in the process of maturing (hopefully), and may or may not be causing problems. I know that things could be so much worse. The tumor has not migrated anywhere else, and we are not currently facing chemo, radiation, or surgery. We'll see what the neuro-oncologist and neurosurgeon think, and go from there.

Christmas

We had a wonderful Christmas at Grandma and Grandpa's house. We also got to visit with some friends that we don't have a chance to see very often, and that was great too. Madeleine got more toys than any child needs ever, but she's happy about it.

Cookie decorating is really fun.

Santa showed up on Christmas Eve for a visit! He looks awfully relaxed here for a guy with such a busy night-before-Christmas schedule, doesn't he?

Christmas morning. The dollhouse was her big Santa gift.

Madeleine's paparazzi

Medically, there is news I haven't really wanted to share, because I'm choosing to believe that it isn't true, until we have more conclusive data. Mad's MRI in early December showed that the tumor may be growing. It's been stable for a number of months, but this measurement showed that it was bigger on all measurements. The measurement could be wrong. Her markers remain about the same, so thankfully they also are not showing growth. Instead of retesting in four months, as was the plan had this scan been stable, she will be rescanned in two months, and she will also have an MIBG (radioactive nuclear medicine scan that shows how much of the tumor is still active) in a couple of months as well. Neither of these scans has been scheduled yet, but I'm holding my breath until then...

Santa

Shabby Chic

I finally got around to taking pictures of Madeleine's room:



















































































I love that the headboard and the frames completely match, that was unplanned. I repainted the dresser to match the headboard. It took a whole lot of sanding and many coats of paint because it was originally stained to match her crib, which was a dark cherrywood color. I'd like to get a small night table too, and I'm occasionally scouring thrift stores for that, but haven't found the right one yet. I didn't show you the blank, white wall that faces the bed. I don't know what to do with it. I'd like to put up some children's artwork, but don't want to spend any money on that project.