Another quiet day for Simon. He gave me a bit of a scare with at temperature above 100 this evening, but it has gone back down. I will be checking it again at bedtime. Tomorrow will be a long day at the clinic, while Simon receives his weekly antiviral, Cidofovir. To start the day, he will need to take 3 Probenicid tablets at 7 a.m., 3 hours before the Cidofovir. The Probenicid is to protect his kidneys from the toxic effects of the Cidofovir. He will also need to take Probenicid 2 and 8 hours following the infusion. At 8:30, we will check into the clinic. Then Simon will receive pre-Cidofovir fluids for an hour, followed by the Cidofovir. Finally, he will receive post-Cidofovir fluids. Like the Probenicid, all of the fluids are needed to protect his kidneys.

Beau is still sick, with a cough and scratchy throat. I am thankful that Bob will be able to come up to Denver to stay with him tomorrow while I take Simon to the clinic. Sick children who are not patients, are not allowed at the clinic. Not that I would want to make him go and sit in the infusion room for hours when he isn't feeling well anyways.

Lastly, I'd like to ask for prayers for one of the precious little ones her at Brent's Place. The following is a post from her dad this morning. Please keep this family in your prayers.

Shawn Hantke

POLINA IS IN INTENSIVE CARE, MONOCLONAL ANTIBODIES THERAPY IS GOING PRETTY ROUGH!!!!!!! SEVERAL TIMES LAST NIGHT SHE HAD BREATHING, HEART RATE, AND BLOOD PRESSURE ISSUES PLUS SEVERE HIVES, WE WERE NOT SURE SHE WOULD MAKE IT THROUGH THE NIGHT.!!!!!!!!! PLEASE HELP US FIGHT, WE NEED EVERY POSSIBLE POSITIVE THOUGHT, HOPE, AND PRAYER SENT OUR WAY A.S.A.P. AND KEEP THEM COMING, THANKS

Kids should not have cancer. Period. End of story.

Day plus 214. 214 days ago, Simon received a life saving bone marrow transplant. I praise God for the advances in medicine that have given us a hope for a cure. I also pray that at the end of this journey, Simon will be able to go on and live a long and happy life.

Simon's temperature has been creeping up today. He is currently at 99.9, which isn't yet a fever, but it is higher than he usually runs, so I'll need to be keeping an eye on it. The swelling in his feet is also getting a bit worse. Please continue to pray for Richard and Diane as they deal with the loss of their son. Also, for the parents of all the kids here at Brent's Place. While we all deal with the sadness over the loss of Derek, we all also deal with the knowledge and fear that it could have been our own child.

I really do not have much to share today. After a long and busy day yesterday, we enjoyed an unashamed day of total laziness today. Simon's cold seems a bit better. He is experiencing swelling again in his feet, so we need to keep an eye on that.

Simon was complaining of ear pain earlier, but it was only due to the volume of my enthusiasm during the final moments of the Broncos' game. We are not normally a football family, but after meeting some of the Broncos in the hospital and here at Brent's Place, we have become fans of the Broncos.

The pictures are of Brady Quinn visiting Simon in the hospital, and some of the Broncos visiting Brent's Place.

A quick trip home allowed us about 5 minutes to unload the car, pet all the pets, and turn around and come back to Denver. We made it back to Denver just as the snow began to fall. Simon is coming down with a cold, complete with cough and runny, stuffy nose. We will be watching that closely, hoping it doesn't land him back in the hospital.

When we arrived back at Brent's Place, we learned the sad news that Derrik, age 19, finally lost his battle. He was diagnosed at age 6, so it was a very long journey for him and his family. My heart breaks for this family.

As parents, we head into bone marrow transplant hoping this will be the cure for our child. We know it will not be an easy road, but when we get through it, our child will be healed. Reality can be brutal.

The reality that not all the kids make it out of the hospital. The reality of a mother having to bury her 8 year old daughter. The reality of a father, who has been fighting for his son's life for 13 years, and loses the battle in the end. The reality of the mother who is taking her 8 year old son home, a year after transplant, to live his finally few weeks at home, instead of in the hospital. The reality that any one of them could have been or still could be, my story.

While all of the bumps in this road called Simon's Journey have been mild, we still have a long ways to go. Although we pray that Simon's transplant is his cure, we also know that Simon may face many more battles in the years to come. The medicines that Simon takes to prevent his new marrow from attacking his body are hard on his kidneys. The antiviral that Simon is getting weekly to fight the adenovirus is toxic to kidneys, and can cause total kidney failure. Simon went into transplant with kidneys only working at 80%, due to his year and a half on immune suppressing drugs.

The chemotherapy that Simon received to prepare his body for transplant puts Simon at increased risk for future cancers. The steroids that Simon has had to take to combat graft versus host disease, have had brutal effects on his body, placing his bones and his joints at risk. All of the meds Simon has been on have given him a bleeding ulcer. Until Simon's t-cells come back, he is at high risk for infection, and a simple cold can land him back in the hospital.

I will continue to pray for the best outcome for my child. I will continue to hang onto hope for his future.

We are at day plus 211 post transplant, but who's counting? Simon had a pretty good day today. His back seems to be doing much better. We are really excited about having a car again next week. The weather has been gorgeous, and it will be nice to get out of the apartment for a bit. Of course, it is supposed to snow tomorrow night, so we may have to make indoor rather than outdoor plans.


Checking out Simon's heart as part of his pre-transplant workup.

Thankful for so many things and especially so many people. Mary Berry, who has a heart for families going through tough times, and knows how to make things happen. Gina and Eric Mantz, for taking the time out of their busy lives to help keep our car running. Falcon Transmissions, who heard our story and rebuilt the transmission in the van, so we will have a car to drive in Denver again, as soon as we can get the car up here. All the amazing friends who have held us up in prayer throughout this incredible journey, both old and new. God never fails.



Simon is still really swollen from the steroids, but his hair is growing back nicely.

I had good intentions with this blog, but just can't seem to keep it up. When I start to write, I tend to get a bit long winded, and I never seem to have the time to write everything I want to express.

I have been trying to keep friends and family updated via facebook. Facebook limits the number of words I can write, so it is easier to keep my updates a bit shorter. (Okay, to be honest, a LOT shorter.) I am going to try something new with this blog.

When I update Simon's status to facebook, I am going to copy it here. If I feel the need to write more and can find the time, I will write more. At least this way, I can keep people without facebook updated. (Can you believe there are actually people who do not have facebook? Not sure I can!)

Today's update: Simon was at clinic today for his weekly Cidofovir, which is an IV antiviral. His counts are all looking good. He has been having a lot of pain in his back, which the doctor is hoping is just muscle spasms rather than damage caused by the steroids. Next week, Simon will have 2 days of infusions. He is getting a bit stronger every day. Thanks for the prayers! God is good all the time!

The picture is Simon, Ezri, and Beau and some of the many visitors who came by during Simon's three week hospital stay in December. There are a lot of really good people in the world who take time from their busy lives to try to make The Children's Hospital a fun place to be, especially during the Christmas season. Note the Christmas lights on Darth Vader!