Saturday, July 14, 2007

More Tests Next Week

I figured that everyone who is not directly related to Parker are probably wondering what has been going on the past few days. Emotions have continued to be all over the place the past few days as results from tests come in.

I had mentioned that Parker's metabolites had decreased significantly recently. On Friday, we found out that Parker's red blood cells that had increased in the amount of ADA activity they had produced had once again decreased. This supported the idea that the therapy may not be working. Since the doctors are very curious to know what is going on with Parker they have requested that Parker have another metabolite test this coming Monday and then have a bone marrow aspirate on Wednesday to see what is happening in his marrow.

Something is happening we just do not know what. We have come to grips that there is a very good chance that the therapy has not worked. Something has kept it from working. You can only imagine the stress that we have been under as we tried to figure out how to go on from here.

Later, on Friday afternoon, my wife spoke with the lead doctor and asked if there was any possibility that if it is confirmed that the therapy did not work if they would be able to repeat it. He replied that they would do there best to find out why the therapy did not work, and then if possible they would do something to counter the reason during a second attempt so it would be successful.

The team of doctors here at TIGET are in my opinion the best in the world when it comes to ADA deficient SCID. We believe that in the end they will be successful in finding a way for Parker to live a normal life. Yes, if they have to repeat it we will be in Italy for quite some time but that is something we have no problem doing if Parker can do everything else a little boy can do.

Please continue to keep Parker in your thoughts and prayers. We hope that Monday's and Wednesday's test results bring some encouraging news.


Auntie Christini said...

Dear Parky,
This has been such a difficult time for you and mommy and daddy, but as always, you remain focused and tough! How do you do it? We are so proud of you and your parents. Although this has been and continues to be hard times, we know that you will eventually be 100% healthy and come home...we're hoping sooner than later of course. We miss you all more than you could know.
Love you all lots and lots.
Auntie Christini, Uncle Mikey and Jacob! xoxoxo

nonna said...

Hey Parker,

Three more getups and Nonno & Nonna will be there. Are you ready for lots of long walks and lots of playtime. We are so excited to see Mommy and Daddy but boy, are we excited to see you.
Nonno found out from Gaga that the pizza there doesn't have pepperoni but he said it was OK because he was going to be eating it with you.

Stay strong big guy.

love you tons
miss you even more

Nonno & Nonna