We just returned from Italy on Sunday night after a two week follow up visit for Parker. We had a wonderful time in Italy and it was so nice and comforting to see so many familiar faces again. Our travel to and from Italy was a little more eventful this year with delays and stolen luggage. However, we are now home safe and with a lot of encouraging news!
Parker is doing well clinically and is definitely responding positively to the gene therapy treatment. We are still waiting for a lot of his bone marrow results to come back, but his doctor in Italy remains very optimistic about Parker and the progress he has made to date. Although, Parker's numbers remain nowhere near normal, the function of his cells is excellent which is extremely important. This past year has been very difficult for us on many different levels and it was such a great feeling to hear some optimistic and encouraging news about Parker. Dr. Aiuti has reduced some of the restrictions we have been practicing with Parker which is wonderful news. For the first time, Parker has actually been given the green light to play with his cousins and friends as long as they are not sick with something that could potentially harm him. Therefore, we must still continue to protect Parker, but unlike before he is actually allowed to see other children as long as they are well. This is fantastic as Parker is at an age now where he needs to interact and socialize with children developmentally. With time, more conclusive results and further improvement, Parker will eventually be able to lead a very normal life which is all that we care about. We have time and as long as Parker will be o.k then we are prepared to do whatever it takes to ease his transition into living a normal and healthy life. May 18th marked Parker's one year anniversary of having gene therapy. It is crazy to think that one year has gone by. We are so thankful and blessed for all of Parker's doctors who dedicate their time and life to children who are severely immune compromised. They are such incredible people and we will be forever grateful for everything they have done for our son and us as parents of a sick child. Dr Aiuti is such a brilliant man and we could never thank him enough for essentially giving Parker a fighting chance at life. Sick kids is the most amazing hospital and we have so much respect and gratitude for Parker's doctors and nurses. We are so fortunate to have such an amazing facility close by lead by such an incredible medical team.
I would like to also thank everyone who has supported us to date through this journey. We are extremely lucky to have such an incredible support network and to be surrounded by so much love and positive energy. So many people have made such a difference in our life and we thank everyone who has helped us financially or emotionally for your support.
There are still some tickets left for the golf fundraiser being held on June 1. If you are still interested, but have not purchased tickets yet, please e-mail golfingforparker@gmail.com before it is too late. This is going to be an incredible day!
I am leaving you with some images from our trip. Please continue to keep Parker in your thoughts and prayers. While we were in Italy we met our friends from the United States and their son who will be having his treatment in the next couple of weeks. We had such a wonderful time with them and wish them all the best as they begin this next chapter of their journey. Please keep them in your thoughts and prayers as well.
Happy Anniversary Parker. You are loved by so many people on so many different levels. You will never know just how much you have touched the lives of so many. God bless!
Ciao!
6 comments:
Happy Anniversay Parker!
We are so happy to have you and your Mommy and Daddy back from Italy. We also are so excited about you being able to play with your cousins and other little friends. You can finally start having some kind of normality in your life.
Stay strong Big Guy and continue to grow those cells.
Love you tons
Nonno and Nonna
Parker Pants!
Wow...You are looking like such a BIG boy in your pictures! I love all of them...and do you know what?!?! I love YOU ooodles and ooodles too!!!!
I am so very happy that you will be able to spend time playing with your cousins...what a special time that will be for you!
I am happy that you and your Mommy and Daddy are back home with us safe and sound!
Lots of love Parker Pants!
Auntie Natalie & Uncle David
xoxoxoxo
What a year it's been for everyone.
We are so happy to have you back home with such good news from your Doctors in Italy.You are our special little angel and we love you more each day.
How wonderful it is to look forward to playing with all your little cousins. Life is good!
Love you loads
Nana and Gaga
Happy anniversary, Parker! We are so happy to hear about your trip to Italy and all the great things happening - and also, that you are allowed to play with cousins and friends! Calder is so excited to play with you, I am sure - he even said 'Park' and pointed at your house the other day when we walked by! :) I also can't wait to spend some time catching up with your Mommy at the same time! :)
xoxo
Elizabeth & Calder
Congratulations Parker!!
So - when do you wanna come over to my house to play "soccer monster" and go swimming?!?!?! We are gonna have sooooo much fun.
I will try my hardest to stay really healthy for you!
I can't wait to see you soon!
Love,
Mackenzie - and Auntie Kari :)
Parker Pants,
Just checking in little one! Looking forward to golfing (or should I say watching others golf!) in your honour on Sunday!
Sleep well little one and KNOW that you are LOVED!
Auntie Natalie xoxoxox
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