Happy 5th Birthday Grant!

Yes, that's right, #5. Can you believe it's been 2 years since we started all of this? We had a great time celebrating Grant today. Birthdays have kinda become a big deal, especially for Grant, so it's not limited to one day. :) He was so excited to turn 5. He asked me about 3 times this morning if he looked taller.

I don't know if you caught the baseball theme?!? We made baseball cookies that Grant took to his class at school today. They were a hit...pun intended. Then, he had a baseball game, which they won, and gave out baseball cookies to his team. And then we topped it all off with a pizza party after the game. And this is just the beginning. We have more celebrating to do. :)

Of course I do a lot of reflecting in April and I will write more about that at another time. But, it's always so great to see Grant enjoying "normal" things in life. We have a very special little boy and God has been so good! Thank you all for your continued prayers! Happy Birthday Buddy!

Easter

Just wanted to post some pictures of Easter. We had a really fun time with family. The picture of our family was taken at our new church, Movement Church. God has led us to help with a church plant and Easter Sunday was our first Sunday morning worship service. We are having a lot of fun. God is Good!

Butterflies & Baseball

We got to have a really special day today. Grant participated in a fundraiser for the organization that sent us to Disney, a Wish With Wings. The theme was Butterflies & Baseball and Nolan Ryan was the chair for the event. Grant got to wear his personalized jersey and walk the runway. But, most importantly, he got to meet Nolan Ryan and get lots of autographs. There were 10 kids that participated and they are so wonderful to each one. Grant really had a great time. But I'm not sure who enjoyed it more....Grant or Dad? ;) http://www.awishwithwings.org/

More Meds

Grant had his regular clinic visit on Monday. On the way to school that morning he told me that he wanted me to tell dad that he did really good at clinic b/c he was going to laugh when he got his poke. I responded that I would fall over if he laughed when he got his poke. No need to worry....I did not have to fall over. He screamed and squirmed and made it miserable. But, when we took the "noodle" out, he did laugh. All this tells me is that he has full control and is choosing how he wants to behave. Anyway, we accomplished what we needed to accomplish. God is good! Grant's counts were still elevated above the optimum levels, so he got another increase in his chemo. He is taking A LOT of medication! Dr. Heym also increased his steroids. Grant has seemed to handle the increase pretty well. The only real struggle was at his baseball game. He got thrown out at first twice and that was just too much. The heartbreak coupled with steroids was not a good combination. He just cried...twice. So, of course, I cried. As normal as Rudy and I would like it to be that he is playing baseball, it's not normal. Did I say he is taking A LOT of meds? And then I reverted back to feelings I had at the beginning of wanting to explain him, not so much to the parents, but especially his teammates. I didn't want them to think Grant was a crybaby. They were so wonderful to him though, patting him on the back and telling him to get it next time. And God has given us some wonderful new friends whose son battled cancer. He is on Grant's team. It's so great to have someone living life with you that understands your feelings. God is good! Grant has had a few things happening that may or may not be side effects. We would just like you to pray for him. He has been getting some spots on his face that come and go. They come up in the same spots each time. Dr. Heym has looked at him and pictures of him when they are worse and does not seem concerned. I would just prefer he not have spots on his face! He is also having some leg pain, much like he did at the beginning of treatment. It usually happens in the car and is a pain behind his knees. Lastly, he has been waking up in the night frantic. He is screaming and sometimes running in our room. He goes to the bathroom and we have a fairly lengthy conversation (for 1 a.m.). He has described nightmares to me. The weirdest part is that he does not remember ANY of it in the morning. Nothing. I feel like I am constantly battling living in a state of fear. I know God is in control and holding each one of us in the palm of his hand. God is good!

DISNEY

We just returned from an amazing trip to Disney World in Florida. A wonderful organization, a Wish With Wings, sent Grant and our family on a wish trip. I could write a really long time telling you about all the fun we had, but I will try to hit some highlights and post lots of pictures. We flew out last Monday and returned Sunday evening. We were picked up at our house and taken to the airport in a limo. The boys were amazed! In Florida, we stayed at Give Kids the World Village, and the name says it all. They provided a 2 bedroom 2 bath villa and all of our meals. They had all kinds of things on the grounds for the kids (playground that was a life-sized Candy Land game, Carousel, Putt-putt, Arcade, heated pools, train). They also had an ice cream parlor that was open all day (all you can eat). That was just Give Kids the World. We also got tickets to all of the parks. We spent 3 days at the Disney parks and 2 days at the Universal parks. Grant & Trent loved roller coasters! It was a really great trip and we all came back exhausted. When we got home, it was chilly and I said I wish I was back in Florida. Grant said, "Me too. I want to stay there until Jesus comes back to get me!" :) Thanks to a Wish With Wings and Give Kids the World!
We did hit the ground running when we got home. Grant had his clinic appointment Monday morning (see previous post). Then there was a fire in our backyard Monday afternoon. No one was hurt, but it burned our back fence and our shed with all of our lawn equipment. That was exciting! Tuesday morning Grant was complaining of sporadic headaches. This can be a side effect from the spinal tap. But, please pray that it is not the beginning of another stroke-like episode. He has not had any headaches today. Thanks for keeping up with us!

It's Christmas every Thursday at GKTW Village. They had a parade, it "snowed" and the kids got gifts from Santa.

This tree snored!

This was our villa.

"They gave me something"

That's what Grant said today at the clinic when he couldn't walk straight. And yes we did! It was the same medicine he had been taking orally to make him loopy, but this time it was a little stronger by IV. It worked much better. He just said 'ow' when Dr. Heym did his back poke (spinal tap) and that was it. He even laughed when the nurse took the bandage off his port. That has never happened. Yay drugs!
His counts were still too high today. So, his chemo is going up again. This is the 3rd month in a row that we have increased chemos. He has had some tummy issues this evening and has been very weepy. He didn't start his steroids until tonight, so we may have a very teary week ahead.

Handsome Boys

Just wanted to share our handsome boys.....

They just got much-needed haircuts. It's really shown how thin Grant's is getting. Hopefully, it won't all fall out. He randomly told me today that he likes it with no hair. I don't know if he's just mentally preparing himself for that or what.

Please pray that Grant will stay healthy. He's had a couple of nose bleeds in the last 2 days. Anything abnormal causes me to worry. We are going to Disney soon for his Wish trip and we would much rather be there than the hospital. :)