Hope for Nicholas | Nick the Kid

Nicholas heads to treatment this Friday at the hospital. This will be one of our last infusions for this chemo drug. We will continue with his oral chemo until the summer. Its hard to believe we are at a point were we’re looking at stopping treatments. Again the potential damage of the chemos will start outweighing the benefits (atleast that’s what we’re told).  We can only hope that Nicholas continues to do so well. We are constantly hoping that more trials open so we’ll have some more options. As of right now, we are not eligible for any trials, and even if he had a regrowth of the cancer, there wouldn’t be one. Its so frustrating to not have options, but believe me, we are not complaining …we are very blessed.
Please keep the Garrett family in your prayers. They are another family who’s son, Trenton “Dozer” Beaver, was plagued by a Glioblastoma. He passed away over a week ago. He was diagnosed only 5months before Nicholas and was such a srong, brave fighter.

We continue down the path of hope and looking down the road for a healthy New Year.

Karen

We are very blessed indeed this Christmas. Nicholas’ MRI on the 15th showed no tumor. Although we are so happy about this news, the doctor did comment that there was a minimal growth in the scar tissue from last year’s scan. This is something they want to keep a close eye on, but they believe it to be only scar tissue. Therefore, that’s what I’ll believe and pray for. Thank you for all the prayers of support and Merry Christmas. Hug your little ones a bit tighter and please know how blessed you are to have healthy children.
Karen

We hope everyone had a wonderful Thanksgiving. We had a great time at my parent’s house all day and wrapped up the evening with a visit to Chris’ parent’s house. Everyone fed us and gave us food for home so that was extra appreciated. All and all it was a good day and long weekend. Having Chris home for the 4 days was wonderful. The kids really enjoyed him. We also went to Chris’ new office/ job on Wed and the kids loved meeting all of his employees and seeing all of the big machines in the warehouse.
This week is an infusion week so on Friday we’ll head down to the hospital for Nick’s treatments and a meeting with his oncologist. This meeting will hopefully help lay our plans for further treatments in the new year. We are still hoping to get into a cancer vaccine trial. The one we introduced to our oncologist should be starting sometime in the new year and it is still our hopes that we can petition to be a part of it. At present, there are no trials in the entire country for Nicholas in the state he is in (not like I’m complaining) given that so few are in this state and since it’s a risk to do a trial on a “healthy” child. Naturally this makes little sense to us, since we and the doctors know the aggressiveness of this cancer. So we fight on to be included.
MRI is scheduled for the 15th.
Thank you everyone for all the supporting words and thoughts.
Karen

Today is 18 months post-surgery!! What a miracle Nicholas is!!!
Halloween: They had a blast going around to each house and getting their little treats. One neighbor even gave popcorn… thanks! Per our new tradition, the kids picked a couple of their favorites to eat and then spent the rest of the night giving out their candy… I should say fighting eachother over who gets to answer the door and give out the candy. They had such fun!
Nicholas has been doing great, no more knee pains for a while now. He’s been running and laughing and up to all his old tricks. It’s so good to see. Times like those, him being immobile, help to remind us how truly blessed we are that he has been so well, so normal. And although it goes without saying that we do feel very blessed, we can’t help but feel all the tension and anxiety that comes the his unknown future. We have known many over the past few weeks that have lost their battle with cancer, some children and some mothers. No matter what, a loss is a loss and every time I hear of one, my heart breaks all over again… for the families that have lost, for the life that is lost, and then ultimately it always reminds me again of what could be for us. It is my constant prayer and hope that we always continue down this healed path and that those in pain over a loss feel comfort and security once again.

Crazy week: Starting Sunday, Nicholas began to experience knee pain again. It got so bad in fact that he didn’t even walk on Monday. Scary stuff for us, but as the week progressed so did he. The doctor now feels that since this is the third time it’s happened in 3 months that it’s probably due to his chemo. Seems my baby’s body is finally, 17+ months later, starting to show some signs of side effects. As of right now though, it’s not bad enough to warrant stopping the chemo. We did however miss our Cognitive testing on Monday and will be making it up on Tues.
This weekend we headed down to our College Homecoming to see some old friends. We had such fun seeing everyone and the kids loved playing with all their friends too. Everyone commented on how great Nicholas looked and how amazing he is. This is always nice to hear. We too think and know he’s amazing and pray each minute of the day that God has healed and will continue to heal our sweet baby. Its weeks/weekends like these where we feel especially lucky to have him as well as our other super-star children. We continue to keep on our smiling faces and pretend we always feeling fine, but have to say that we are always aching inside. We truly feel fortunate though for where we are today considering where we came from almost 18 months ago.
Keep praying everyone!
Karen

Had a great time Pumpkin Picking this weekend and wanted to share some of those pictures with you.
We have a busy week this week. Nicholas has cognitive testing all day on Monday (this is standard practice for Brain Cancer children), we’ve have Nicholas’ oral chemo all week, have open houses for the kids Tues and Thursday, and Nicholas’ chemo infusion on Friday. Boy, it sounds tiring just writing it all. Nicholas remains the healthy and happy little boy he’s always been. We are truly blessed.

As many of you have heard, our MRI results came back as an All Clear. We were on top of the world with these results as we headed to Disney for our Make-a-wish trip. We had such a wonderful week of fun and rejoicing for the miracles in our lives. We stayed at Give Kids the World which is mostly run be volunteers and donations. The complex was like its own park with something to do everyday for the kids, not to mention all the tickets for the Disney Parks. We felt very blessed to have been there. Here are a few pictures.