More Steps Forward

On Monday Ben got his central line out, proof that chemo really is done and he is one the mend. He wasn't sure how he felt about having something that has been a part of him for over a year suddenly disappear, but Mom and Dad couldn't be happier.

Even though we explained several times that his tummy tube would still be there after the other tube was gone, Ben started crying when he saw Mom bring the feeding bag out and the reality hit that he still had to attached to his tether. That was pretty hard for the Mommy and Daddy hearts to take. But it wasn't all bad. Since Monday, he has been more motivated to eat than he has since this all happened. And that coincides perfectly with our visit to the Dysphagia clinic up at PCMC yesterday. They helped us set up a plan to get Ben off the feeding tube. We have a long road ahead with a lot of baby steps in between, but I am hopeful that a year from now our sweet Ben will be tether free.

Today we are off to the dentist to find out the damage report from all of that vomiting the past year. I'm pretty nervous for what we will find out.

So, we need to have a swallow study, a lot more therapy (especially OT and Feeding Therapy), and many more horse rides ahead of us. We'll be sure to keep you posted.

Lots of love from us to you.

It has been a very busy week of multiple hospital visits. Ben is now officially "Off Treatment." He had his follow-up visit at the clinic at PCMC on Monday. Let let us know the always welcome news that the MRI he had done on Friday shows that things are stable in his brain and spine. Our next MRI will be in three months, and we are praying for the same good result.

We found out at his hearing test on Monday that Ben's hearing is also unchanged. We are very grateful that the last chemo treatments didn't make it worse! He is very borderline as to whether he would need a hearing aid, so we have decided to not get one for now, and get another hearing test in three months to see how he is doing.

We went up to the hospital yesterday for our monthly eye appointment. Here the news is not so good. His left eye is starting to drift up again, and his right eye is turned in, all due to the brain tumor. Our doctor said that chemotherapy does affect kids eyes in strange ways. (Sometimes the cure is almost as bad as the disease.) Ben will definitely need additional eye surgeries, one on each eye, but our doctor wants to wait a couple of months for things to stabilize, and do it then. I'll keep you posted on that one.

For our final good news, Ben is off one more medication, and gets his central line out on Monday. One more tube will soon be gone! Then he will only have his feeding tube left. Our little guy started out in the PICU with tubes everywhere (he had four chest tubes draining his lungs at one point), and now we are going to be down to one! And we no longer have to give him constant medications all day long, he is only on three now. Our guy has come a long, long way.

As always, thank you for your love, support, and prayers. We pray for blessings back on your heads!

Good News

I am very happy to report that Ben is doing much better, and is getting some of energy and smiles back! This last treatment was hard, but he seems to be through the worst of it, and doing better by the day. We are starting his therapies back up, and are very excited to see how much and how quickly he will be able to progress from here. Yeah, Ben! :)

Thank you all so very much for all of your prayers in his behalf. I have no doubt at all that they are being answered!

Home

What a long week and a half it has been. In and out of the hospital (but mostly in), being away from home and family, stuck in the same room for days, not sleeping well at night because of important but annoying hospital beeps and interruptions, trying to find something new for a very bored five year to do. Did I mention missing home and family?

Ben is doing better, but his counts are still quite low (0.4 white cell count, 37 platelet count, .2 ANC - all of those are extremely low), and he continues to have very little energy (and his mom is pretty darn exhausted herself). He looks pale, partly because of feeling so sick, but also because he's once again lost his hair and most of his eye brows and eye lashes.

On a positive note, the nausea is a lot better. We still have Ben's food running lower than usual, but he is only throwing up once a day, which a big improvement.

So, this last chemo treatment is making it's influence felt. We are so grateful that we don't have to go through another one. I'm not sure that any of us could have made it!

Thank you all so very much for your supportive and loving comments, your help, and as always, your prayers. I truly don't believe we could have made it this far without all of you!

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.