Alexis Grace Douglas’ PrayerSite

 This is a picture taken on Alexis’s day of diagnosis when she was 11 weeks old. 

I’m sorry I didn’t post yesterday.  The echo went great, no results yet; but she was a gem!

After that test, we went to clinic to get her NG tube replaced.  Our doctor came to clarify with me the results of the day before.  She knew we were obviously upset, and wanted to make sure we understood.  We also spoke with our other doctor, the Neuroblastoma specialist today, and was told the same thing…

 They are calling Alexis’s disease “STABLE”- Wow! Not what I expected.  They explained that the 2 new tumors, might not be new at all, just newly detectable.  Because Alexis’s cancer is staying within the liver, and not spreading elsewhere, they deem it stable.  Stability works for me!

The doctor today answered a lot of our questions about the treatment options, and details.  None of which are chemotherapy.  She said, just like we think that this disease did not respond to chemo, so why do more.  We wouldn’t want to do anymore chemotherapy!  So, we will give her our decision of which drug/medication we might be willing to try.  This is very good news.

She agreed the best news would be a miracle and there to be no more cancer! But, this is news she said “she is pleased with”.  We’ll take that, it’s so strange that one day we are discouraged because of 2 more tumors & today we are told “Stable”.

By the way, neuroblastoma being in her liver is not like adults; it is just one of the many places it goes to (so we’re told).

Also, the dietitian weighed & measured her yesterday, and she is 18 lbs. Yeah!  We’re headed the right direction & her height is also up.  She isn’t vomiting anymore, thank you Jesus!  She gave Alexis & us the weekend off from the tube.  Of course Alexis is nursing like crazy, not being fed 24/7- I don’t expect she will gain this weekend, but she should at least maintain; then we can start up again on Monday & really try & increase her weight back to 20, where it was.

She is so happy not being connected to anything!  It is so nice, I don’t have to be scolding her for touching her “tubie”, and there is nothing holding her back!  She is having fun.  I think the only way not to get our NG tube back, is to have her gain a lot this weekend.  Not impossible, but not likely, she doesn’t take to eating food too well.  She is off and on, so a few days of freedom for all of us. 

Anyway, I love to share more positive news.  Thank you for praying for our Angel, we love her so much.  God is in total control.  I’m not even worried or distressed like normal, in picking treatment plans.  She has a non-responsive disease to treatment or at least all treatments so far.  We are not going to give Alexis any treatments or medications that make her miserable.  Time is too short, and if there is no promise of working, why do that to her….?!

Have a wonderful weekend!  Enjoy each other!  Enjoy the sun & even the rain! I’m trying to at all times, though sometimes it is just hard & tiring.  But I would much rather have “hard” times with Alexis than one second without Alexis.  She is so sparkley!  Thank you God for making her so bright and for Austin’s loving spirit this week; she has been so helpful & Awesome!

Thanks for pryaing, God we give you the glory for all the smiles & laughter! THANK YOU!

-Jill