Long time

I can't believe that it has been about six months since my last post! The fact is, I'm not really sure what to do with this blog. Now that Madeleine's tumor is stable there isn't much to share in terms of medical updates. We recently saw the neuroblastoma specialists in LA, and she was happy with Mad's recent scans and doesn't see any need for further biopsy at this time. She still has to be monitored, as the tumor is still active.

We also have to watch out for secondary effects from the chemo that she received, such as secondary cancer, problems with infertility, etc. My biggest fear is that Madeleine won't be able to have children. I worry about this all the time. It was very reassuring to hear that with the amount of chemo that she had, her doctors don't think that infertility will be an issue. There is still a likelihood that she could have some sort of secondary problem, but from what we've been told she may just beat this thing without any issues...except for a couple decent scars, and a weakened right leg...but I'll take that.


In OTHER life news however, there is a fair amount going on. In August Madeleine became a big sister:She loves her little sister, Laurel, and is surprisingly a big help to me.


Madeleine has been enjoying her dance class:


And logging in some beach and friend time:


Shortly after Christmas we are moving to New Mexico! Ryan got a good job at the National Lab in Los Alamos, and we are looking forward to getting out of fast-paced Southern California. We will definitely miss our San Diego friends, but I think this will be a good move.

Preschool

I just dropped off Madeleine for her first day of preschool. She is so excited. She wasn't worried at all, and was ready for me to leave the second we got there :)

In the picture above you can sort of see her new AFO brace on her right leg. She's had it for a couple of weeks and is still wearing it, so I guess that's a good sign. The brace is to help straighten out her foot so that she doesn't roll onto the inside of her foot so much. We've noticed a lot of improvement in her walking, jumping, and running even before we got the brace, so she's continuing to make accommodations for that weaker right leg.

And now I have three glorious hours to myself!

Medical update

Madeleine's recent MRI shows that the tumor is stable and there hasn't been any growth for the last six months! This is great news. Her VMA/HVA levels continue to be high, which means the tumor is still active (but not growing). We have been told that these levels can remain high for years, so while we'd like to see them dropping, we aren't very concerned about this.

The stable tumor means that we now get to do MRIs every four months (instead of every three) and urine tests every two months (instead of every month).

Madeleine's cancer diagnosis also means that we were able to secure free cord blood banking for baby #2 - a huge savings for us, not to mention the potential life-saving ability of cord blood. I am 31 weeks and feeling great!

Recent pictures

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.