Hi everyone,
Man, this dreary weather does not help anyone's mood, does it?
Today Owen had to go in to the hospital to get a "Super Heparin" liquid put in his central line because they have had some trouble getting blood out of it the last few times, which can sometimes mean that there is a small clot blocking the line. It is amazing how well it works! He has to have it sit in his line for awhile (about an hour) then they pull that liquid out and voilia!! It worked, and they were able to get the blood they needed for his CBC's!!
He has still been feeling pretty well. We went today to the Alden Schools and dropped off a thank you framed picture-it has two pictures on it of Owen meeting the Power Rangers and says "Thank you for Helping to Make my Wish Come True!" and his name. Actually, Frank made them-as much as I would love to be crafty, I do not have the ability.
Owen will be honored as Child Champion on Thursday at Salvatore's! He is such a cutie pie! He has been so very happy lately, except for a few moments here and there...I have literally always said though, I would rather have him here and crabby then not here at all. God, how do people get through this?
OK, focusing on the happy...Kisses and hugs for my strong little man! Nothing better than getting them back!
Jen

Owen's Make a Wish trip was great~I am so thankful that we were able to go while he was still feeling well. He got to meet the Power Rangers, which was his wish. It was pretty incredible to see him with them. He was very excited, and was happy that the Pink ranger spent the most time with him!
He was also able to meet Spiderman, which he was also extremely excited about. While the others were waiting to ride some roller coaster at Island of Adventure at Universal Studios, I took Owen to look for characters, which were the highlight of the trip for him. We walked down around the part where the Marvel character rides were, and didn't see any characters. As I was walking back with him to the spot we were going to meet everyone, we saw a sign that said "Meet Spiderman this Way" with an arrow pointing toward the back of a store. I thought for sure that he would not be there because there was no line of people at all, but we walked back anyway. Sure enough, in his crouching Spiderman position, there he was! The best part is Spiderman actually talked to him (the majority of characters did not speak at all, even the Power Rangers). As we were approaching I said, "Oh my gosh, Owen! Look! It's Spiderman!" and Spiderman said, "Hey Owen! I heard you were here~I've been waiting for you!" He went on to spend about 10 minutes with him. He made Owen a superhero and told him that he was so brave and that he saw Venom run the other way when he heard that Owen was there. We had our picture taken with him-. Spiderman even carried Owen to his stroller!
Will write more about the trip soon. Take care!

Disney tomorrow!

Tomorrow we leave on Owen's Make a Wish trip to Walt Disney World in Orlando, FL! We are all so excited, but I imagine some of the trip will of course be overshadowed by the reason we are there. The doctors had us move the date up from our originally scheduled date at the end of June/beginning of July~not a promising sign, but we need to go while Owen is still happy and feeling well. He is hoping to meet the Power Rangers-the whole reason he wanted to go to Disney in the first place! It is such a magical place, I hope the memories we will get from our trip will be incredibly happy for all of us.
I will try to write as much as possible to keep everyone updated on everything.
Jen

Fireworks...

Hi,
We saw the actual pictures from the MRI today. What I thought might be a few spots on/in his brain turns out to be multiple spots-well more than 20. Picture the sky on the 4th of July exploding with fireworks--that is what his brain looks like. He also has two spots in his spine. It was quite shocking when I saw it, to say the very least. However, we now know exactly what we are facing. We know that there is no possiblity of cure at this point. The tumors he has will continue to grow, and new ones will develop. Options at this point are palliative. He has been put on anti-seizure medication to hopefully slow the development of seizures which are inevitable, a much stronger steroid to reduce swelling in the brain (so he will puff back up again, just as he was getting back to a much less steroidal appearance) and also a chemo drug which will hopefully slow the growth of the tumors he has and the development of new ones, allowing us a little more time with him.
His Make a Wish trip to Disney has been moved up from July to this coming week. I am so, so thankful that we will all be able to go and enjoy this precious time with him while he is still feeling well. He is still my sweet little giggly Owen, and as active as ever! I hope that he is able to stay this way until the end. My sweet baby. My God, what am I going to do without him??

Relapse....

Hello all,
Just wanted to let everyone know that todays MRI showed some spots on Owen's brain. Not sure if these are new medulloblastoma spots, or new, secondary cancers. Either way, it's that damned word again--cancer. I will know more by the end of the week. I will update when I know more.
Jen

MRI Today...

I am holding my breath and keeping my fingers (and toes) crossed....