Back in the hospital

Well, here we are again. First, Ben came down with a fever Friday night, and since his immune system is at zero, we were automatically admitted to the hospital. We spent the weekend here, but his fever was gone for at 36 hours, so they let us go home Sunday afternoon.

Ben has continued to be very nauseated. The nurse told us that having zero white blood cells can do that to you. Then yesterday, right before his sister's 10th birthday party, he got a fever again. He still was neutropenic (zero immune system), so they told us we had to bring him back in right away. Don't wait for the part to be over, don't pass go. Grandma very kindly brought him up last night so we could help our 10 year old feel loved, and then I came up and spent the night.

Ben's fever continued through the night, as well as his nausea. I was talking to the doctor this morning, and they want him to go 24 hours without a fever while on antibiotics (they have him on three), then they will take him off, and they want him to go another 24 hours without fever after that before we can even talk about going home. So, it looks like we'll be here until at least Thursday afternoon, if not longer. Please continue to keep our little guy in your prayers!

Our Sick Little Ben

Well, this last chemo is going out with a bang. For some reason it has made Ben really sick. He has been throwing up quite a bit, and has zero energy - probably partly because I can't run his food over about 15 mLs an hour (which equals about 15 calories). Not a lot of food for a whole day. On top of that, his blood counts came in as low as they have ever been. His red count is almost low enough for a transfusion, and his platelets, which are usually around 120 after he has had chemo, came in at 35. If they drop much lower he will have to receive a platelet transfusion. On top of that, he is neutropenic, which means his immune system is at zero. That alone can make him feel awful. All of that together makes for one sick little boy. He hardly moved all day yesterday, and today isn't much better. Poor little Ben!

But, a couple of weeks from now his counts will be back up, and he will have more energy and be able to have more food pumped in. I just hope those couple of weeks don't feel too long to him! Please remember to keep in your prayers, and thank you for them!

Ben's Last Chemo Treatment

Well, Ben is home after having received his last chemo treatment. I have very mixed feelings going on inside of me right now. On the one hand, I am so incredibly happy that he is DONE. No more chemotherapy! We really felt like this day would never come, yet here it is.

On the other hand, I feel emotionally battered. As you can see in the picture, Ben had a very hard time with this treatment. I took this picture as we were getting ready to go home to show how he looked at the end of his last chemo treatment. Ben really had a rough few days, he wasn't even close to the happy smiling boy he usually is, and he will continue to feel awful for a few weeks. No one should ever have cancer, especially not an innocent four/five year old boy. My mommy heart just feels very sad for my sweet boy right now.

We still have a lot of work ahead of us, and Ben truly works hard, but the worst of it is over. Now our little guy can concentrate on feeling better and rehabilitating his body and brain. We'll continue to keep you posted from time to time as there is news to share.

Again, thank you for your love, support, and prayers. We are forever grateful to you all.

Horse Riding Therapy

Even though he doesn't look like it in this picture, Ben had a great time riding his horse. It was a lot of really hard work for him, both mentally and physically. When we asked him if he had fun, he nodded his head "yes," and then made the sign for "home." In other words, "Yes, I had a great time, now take me home and put me in bed!"

8th Chemo Treatment

Ben is coming home today after having his 8th chemo treatment, which means we only have one left!!! He gets six weeks to recover from this treatment, and then he'll get his last treatment in early March. A year ago we never thought we'd be this close to finishing he treatments, but here we are. And it is a very happy day!

Ben also had an MRI on Monday to make sure the tumor isn't starting to come back. Gratefully, he had a clean scan, which means there was no visible sign of tumor regrowth. We are always on pins and needles waiting to find out what the MRI says, so this was very good news. He will continue to get MRIs every three months or so for quite a while after he stops his chemo treatments, then every six months, then every year, etc. If he goes five years after treatment with no relapse, then he is considered "cured."

We are starting a new therapy for Ben this Saturday. It is horse riding therapy, and it is supposed to be very effective in helping to rewire the brain. We found a lady in Spanish Fork who has been doing this for 15 years, and after talking with her, we feel really good about her. We just hope, and especially pray, that reality lives up to all of the hype!

One Year Ago....

How do we describe the past year? Words aren't adequate. There have been tears and laughter, concern and rejoicing, setbacks and triumphs. Most of all there have blessings and love. The Lord preserved the life of our son, of that we have no doubt. He placed the right people in the right place at the right time, and we are forever grateful for that. And the blessings didn't stop there. He has been with us every step of the way. Many of those steps have been very hard, but with His help we have made it through.

Our little Ben has been a fighter. He hasn't given up, and works hard every day to get back to where he wants to be. The determination in his personality that was hard to deal with before all of this turned out to be a huge blessing now. His therapists are always commenting on what an unusually hard worker he is. Because of that we know he hasn't reach the end of his progress. This is one kid who isn't going to give up!

There is no way to adequately thank everyone for all the support, love, prayers, and faith of the past year. One of our biggest blessings this past year has been all of you! Ben has been told in blessings that the prayers of many were being answered in his behalf. Thank you from the very bottom of our hearts.

And now that we've looked back, we turn now to the coming year and all of the good things that lie ahead.

Much love from our family to you.

Ben's Eye Surgery

Hi Everyone! Ben had his eye surgery last Wednesday, and it went really well. The doctor took a good look at Ben's eyes and said that everything looks great. Ben doesn't need glasses, and his eye has been fixed. He has a "bruise" in the white of his eye that is blood red and will turn every color of the rainbow before it goes away. It is totally benign, but he looks like a vampire out of a monster movie. It's pretty funky.

Interestingly enough, Ben's nausea has been almost nil since he had his eye surgery. Apparently, he has been seeing double for the last year, and I really wonder if that has been the cause of a lot of his non-chemo related nausea. It will be interesting to see what happens.