Wednesday, March 28, 2012

23 days.

That's how many days we've spent in the hospital this month, a day off here and there. All I wanted was for this day to get here so we could go home and Mal's numbers tanked already. So hello blood transfusion #8. Hello 4 o'clock discharge.

Should be greatful that we're going home today but I'm doing it grudgingly and mumbling swear words under my breath at stupid cancer once again for foiling my plans for the day.

I lost my cell phone once again (I've never mentioned how much I rock at doing that.)

My moms at my house cleaning, soon momma soon we will be through this and I can go back to doing laundry, dishes and possibly even a little landscaping. I can't guarantee I wont mutter some swear words through those chores though but ill be happy to do them because it means my life will be a little less crazy if I have time to even think about a dish to clean.

Anyhow well ok I am done with my whining for the morning, April's just going to be a better month for us.

*sticks out tongue at Neuroblastoma, effff yewwww*


  1. There's not enough rageface to convey your feelings, I'm sure. But progress is progress, and Mal seems to be progressing well!

    Father to Alyssa, dx 12/15/11. Neuroblastoma, Stage 4S.

  2. Regular boring chore fill mommy days are coming. More prayers for you and yours, and those whom you call friend at the hospital....

  3. Adam - she is doing GREAT! She needed her baby vamp blood for sure so it was worth staying. I was packed and ready to go at 8am, I should have learned by now the minute you pack your bags you WON'T be going home!

    Hows Alyssa doing? Do you guys have facebook, I look at your blog hoping for more updates all the time.

    1. Alyssa is doing better than we could have hoped. We've had 2 rounds of chemotherapy, and just had the Broviac removed a little over a week ago. We're at "end of treatment", as they don't feel any further chemotherapy will be of benefit. The latest MiBG scan shows no Neuroblastoma cells anywhere outside of the liver -- and the primary/focal lesion on the liver is no longer viewable on an ultrasound, there appears to only be the smaller lesions. The hope is that they'll continue to regress on their own. So, basically, we're at the mercy of the next ultrasound/CT/MRI/etc..

      As odd as it sounds, despite the "good news", I can't help but still remain apprehensive -- I don't want to get caught off guard if the other shoe should drop.

      Maybe one of these days we'll get to focus on just being parents, right?

      My wife and I are very, very happy to hear of Mal's good news. We don't "know" you guys, but we can't help but hang on to each update as if it was our own. Here's to more positive outcomes and hopefully some time to adjust to our "new normal"! :)

      Oh, and no, we're not currently on Facebook. Although I'm beginning to rethink that decision more and more, heh.

      * On a side note, my wife had sent you a PAN on BabyCenter (with pics, etc). We had been making custom "Broviac vests" for Alyssa, and we'd like to send you a couple for Mal. They really do make things easier to prevent any pulling or bending of the Broviac. It also keeps it out of mouths and diapers. :)

      Father to Alyssa, dx 12/15/11. Neuroblastoma, Stage 4S.

  4. YAY For Alyssa!!!!! I will continue to pray for her that you get good clear scans. It FREAKS me out knowing that Mal has a large tumor inside of her when she will go into remission and they cannot do anything to take it out since she would be missing both adrenal glands. Therefor making it a very difficult life of many medications everyday to keep her hormone levels stable.

    I cannot WAIT for the day we can focus on being "normal" parents instead of oncology ones!

    I bet you were SOOOOO excited to get that stupid broviac out, I will sing praises and dunk Mally in a big pool of water once it does. It's been 5 months since her last big tub bath and I CANNOT WAIT for this summer.

    I haven't checked my baby center in awhile, but I will go look. I would totally take you up on that offer if we weren't almost at the end of treatment, Mally has hopefully only 5-6 weeks left of the broviac.

    You need to post more pictures of that cutie on your blog, seriously she melts my heart. :-)

    Much LOVE from us!