Thursday, July 12, 2007

Disappointment, Encouragement and Uncertainty

Before I begin, I have to admit that I have never felt so much stress in the span of one week in my life. Everyone that reads the blog regularly knows that we have been waiting for some results the past few days in hopes that Parker has a chance of making the gene therapy work.

I had mentioned previously that Parker's metabolites had been increasing at a very high rate. The metabolites give his new cells an advantage over the old cells but for some reason we were not seeing the effects of the advantage. We were waiting for Parker's blood test results to arrive on Tuesday in hopes that his toxic metabolites either decreased or stayed relatively the same. What we got instead was our doctor telling us that he was not very optimistic anymore, that the toxic metabolites not only increased but they doubled and Parker had lost most of his engraftment when they looked in the peripheral blood. He was not ready at the point to say that Parker was the only patient who the gene therapy did not work for but he did say that he had the least number of engrafted cells and the highest number of toxic metabolites compared to any other patient so far.

Everyone was dumbfounded. No one could have predicted that Parker, the best patient to enter the study was going to be the only patient that would not display relative success with gene therapy. My wife cried. Me? I just could not understand what was happening.

The only good thing that came from our conversation was that for the first time the red blood cells had shown an increase in ADA activity. When Parker had his bone marrow aspiration he was given a red blood cell transfusion. Of course these are not his cells and display ADA activity. But as the days passed these cells died and the ADA activity from his red blood cells constantly decreased. What was surprising was the fact the Tuesday's results showed a 50% increase in ADA activity from these cells. The only way this could be would be for Parker's bone marrow to have produced them. The team was not convinced that this was the case and that it was not just an error in the test so they decided to repeat the test and put a rush on the results.

So, the past two days we have been miserable. We have been trying to figure out what we would do if the gene therapy did indeed fail for Parker. Yes, we were hoping for some miracle but being realistic we did not expect anything to get better when the results arrived later this week. No one here in Italy was very optimistic.

Last night, the phone rang close to nine in the evening. It was our doctor. He said that he did not want to wait to give us some good news. Parker's metabolites had decreased 30% in the span of one week. He also said that they now feel they can predict what is going to happen with his metabolites. They should slowly decrease over the next weeks. Does this mean that it is working? Does this mean that we are out of the woods? We don't know. We will probably meet with our doctor tomorrow and get a better understanding of what is going on. We do not really know what is happening in Parker's bone marrow. Did his cells proliferate and increase or were they all overstressed and die off. We don't know. We just hope that the metabolites do continue to decrease and his white blood cells begin to increase steadily.

We just want this to work so that Parker, his mother and father can live a normal life eventually.

Thank you to everyone who has been praying for Parker the past while we know that every prayer helps.

6 comments:

Auntie Natalie said...

Parker Pants,

My goodness little one you and your Mommy and Daddy have all been through so very much. I will keep praying that the lastest news is a sign that your treatment is working. You derserve it so so so much. You are an AMAZING little boy. Spending time with you made me fall EVEN MORE in love with you!!! You are a superstar...keep surprising everyone Parker and know that you are loved more than you can ever imagine!

Lots and lots and lots of love,
Auntie Natalie & Uncle David xoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Stacy & Brad said...

TRacy, kevin & Parker,

THINKING OF YOU GUYS EVERY DAY!!!

I know good things are to come and all your wishes anddreams are still to come true!!!!

Lots of prayers, hugs and LOVE,

Stacy xoxoxoxox

nonna said...

Hey Parker,

You are surrounded with so much love, prayers and positive minds. Your parent's love will give you all the strength you need and we will all keep praying for your continuous cell growth.
You are the strongest boy in the world and you will keep on amazing us with your determination and strength.
I can hardly wait for the day that you are playing and swimming with your cousins.

Stay strong DesLauriers

Love you tons
miss you even more

Nonno & Nonna

Auntie Christini said...

Dear Parky,
We were relieved to say the least when Nonna called us after speaking to your father that the toxins decreased by 30%. We knew you were a miracle boy and that something good was going to happen. We pray and think of you every single day. We know you'll continue to thrive and we'll hear some more good news tomorrow. Hang in there big boy. Tell your parents they are extremely strong and that we think about you all constantly.
Love you LOTS,
Auntie Christini, Uncle Mikey and Jacob xoxoxoxo

Franni said...

Dearest Parker,
We are so so happy to hear the good news! Tomorrow is such a big day for you and your mommy and daddy. We are all praying that the good news continues and that everything happens as we always hoped it would. Rest up and have sweet dreams tonight!
Love you tons!
Auntie Franni and the BOYS!

Kyle said...

Hey Parker.

You truly are amazing Parker. All you have been through on this whole journey makes you who you are - a super super superdooper little big man! Fight fight fight, keep the faith and continue to be strong. All our prayers and thoughts are with you, your mother and your father.

Love & miss you more and more everyday.

Kyle & Josephine