August 2006 Archives

VNTRS are in and all of Simons b cells are wiped out They will still do the last two doses of rituximab to make sure they stay gone. This means his immune system is down again. The vntrs came back 100% t cells and out of them 39% were still Marrianas. That means 61% are Simons. I'm having a hard time thinking that her minority of cells are going to prevail over Simons majority. Its hoping on a miracle. Simons physical therapist brought me a bracelet today that said "EXPECT MIRACLES" and that is exactly what we are expecting to happen here. We could really use all the support, prayers and if you are owed anything for God and the saints we could use you to cash in in honor of Simon. Hes such a sweet, thriving boy. He has had a rough couple of days with his skin breaking down and was up all night last night so we are both bushed and we were up a little later tonight still celebrating his actualy birthday today so I'm hoping he sleeps well tonight. Please pray, really pray for our son and our MIRACLE. God Bless you all. Tracy and David

Yesterday we celebrated Simons first Birthday with family and friends. It was an amazing day. Simon had so much fun and we were so blessed with everyone coming and enjoying the time with Simon. He loved every aspect of it and he was feeling really good. He soaked up every move all the kids were making, he watched as the grown ups talked and laughed and he loved opening his presents. He was a little reluctant to dig into the cake but quickly got over that as you can see in the photo. Our hearts were filled with happiness and smiles just being able to enjoy the day and seeing Simon enjoy himself soooooo much. My heart is still smiling today.

We had a very unexpected surprise when Daves sister presented us with rosary bracelets and a rosary chain that she and some of her friends had made in asking people to continue to pray for Simon and his health and a good working immune system. Daves sister, Rose, some of her friends, Donna S., Kathi, Donna K. and Daves mom helped to make the bracelets and together with my sister Denise and best friend Patti they all took donations for Simon and for us and presented this to us at Simons party yesterday. We were overwhelmed and cannot thank everyone who took the time to do this and everyone who donated for this cause enough. It really filled our hearts with strength to know so many people who don't even know us are praying and caring about Simon. God Bless you all and thank you so much. I will leave you with this....

Imperfections are what life tests us with.

A toast to life, is living it well
and loving often,
and celebrating triumphs.
laughing, believing, healing, sharing

Show your love, share your tears
For a single minute can sweep away a thousand years.
Don't let go
even in the pain
take off your shoes, and dance in the rain.
At dawn the sun will rise
Its then that you will realize
That all that is good
all that matters to date
Is all that you embrace and celebrate.......

Keep the Faith, Keep praying. God Bless Tracy and David

Dave, Simon and I spent the day at clinic today getting Simons first dose of Rituximab. It started off a bit scary that after Simon was premedicated with benadryl and tylenol and the infusion started he got crazy irritable, crying and kicking and vomitting. He had us all a bit concerned. We all think between his normal meds and the premeds it was too much on him and benadryl seems to always make him a little irritable. After vomitting he was flirting through the glass windows of his private room at all the drs. and nurses. It was pretty cute. So we are home and things are ok. We are going with good feelings as we start this round of treatment and along with Dr. Jacobsohn, feeling good that it will help and send Simon's bad cells packing and Marrianas cells prevailing. Bless you all and keep Simons goal in your prayers. This weekend we celebrate his birth so look for photos of messy cake face. Blessings, Tracy and David

Today was a visit to stem cell. I was nervous and continue to be due to the cell count which was drawn again today. I was also disappointed due to the fact that Simon has lost weight. I thought I was doing so good with getting him to eat and thinking food should put on weight right? Well not this little guy. His stools have even firmed up and lessened. It doesn't make sense. His white count is higher again, which when he was first diagnosed was one of his problems, so that has me a little worried as well. So we wait and will find out where we stand this week. So please read below and ask for miracles for Simon.....

"It seems like a long road ahead, the road to the right,
and you tired at the start.
Did you say your prayers last night?

Did you kneel down and pray and keep your hands folded tight?
Did you look up to heaven for aid?
Did you say your prayers last night?

Our prayers are always answered, we'll be shown the light.
So let us bow our heads and kneel,
and say our prayers again tonight"
(thanks for these words Rose)

Please pray for Simon to have more of Marrianas cells. I go to bed every night and prayer, a prayer to God, a prayer to St. Anthony (St. of Miracles), and Hail Marys and when I wake to add feeds to Simon I lay in bed and fall asleep praying twice a night so please help me to ask for help and say your prayers tonight. God Bless, Tracy and David