Sunday, July 12, 2009

And back up we go!

Bret put a call in to the head doctor on Friday after our appointment. She had gone over the latest x-rays and his previous x-rays and feels that the spot on the arm was there before. They missed it. This is good news for the moment. Hopefully it means that it hasn't gotten bigger during treatment and that we can forge ahead with plan A for the moment. I am still guarded and don't feel that we are out of the woods by any stretch of the imagination. Though it is good news based on what we were thinking may be going on - it is bad news that there is indeed another spot. And if they missed this one initially, what does that mean? There may be other small spots that they missed?

We head back down tomorrow morning for his chemo treatment that was bypassed on Thursday and a heart sonogram to rule out other issues there. I am taking a deep breath and trying to relax and enjoy every moment.

He is just the best little guy! He is such a trooper and so happy! He is getting fatter by the day thanks to the prednisone - but he's still a cutie! Here are some photos from our trip out to Bodega Bay.

Thursday, July 9, 2009

Always Something....

We really try to stay positive over here about Amani's health issues. We are always remembering how thankful we are that he is here with us so that we can deal with his illness, and what a miracle it is that we got him when we did. In Ethiopia, this disease would be a death sentence. I am always very careful not to say this is "too much" or "what next?" even though I sometimes feel that way in the back of my mind. I know that we aren't given more than we can handle - and we CAN and ARE handling it.

However, I was prepared for lots of challenges. Or I had given them a lot of thought anyway. The adjustment to a new family member. The added stress of making sure everyone is getting what they need while the baby is attaching to us. Working with a new little personality with demands and opinions. Sleeping, eating, time, time, time! All these I had considered. But now we have the disease on top of it.

We were going along fine as I have said. The kids have been great. We have such amazing family and friends that have made it easy for us to pick up and head to UCSF for days at a time. Amani has been tolerating his treatment. He has gotten very puffy in the tummy and belly. He does get really amped up and is having a harder time sleeping. He does get aggressive and angry at times. His is very clingy and needs mom 24-7. But, we are kicking the cancer! Or are we?

I took Amani's clothes off to put him in the bath this morning and saw that the area on and around his port was bruised and swollen. I panicked and called UCSF and they told us to come right in. Well, they are two hours away so I got him right in the car and took off. I couldn't imagine what had caused the problem except maybe his carseat buckle being too tight?

We got there and they sent us straight to x-ray. This little guy has probably had about 30 x-rays so far and 2 CT scans!
he was a trooper for the x-rays and then we went back down to the clinic. They said that because his port area was so swollen they couldn't give him his chemo today and that we would have to come back Monday when it had gone down. Okay. AND....the x-ray technician thinks he sees another lesion. One they missed? Maybe, or maybe one that is new and is growing during the treatment. UHHGGGG.

So we go back Monday after they have had time to compare this new x-ray with previous pictures and see if the LCH is indeed growing through the current treatment. Chances are good that next week, when we thought we would start to taper off the medicine, we will be adding in another more powerful drug. :(

I don't know what that swelling was about. I was beating myself up early in the day thinking I may have inadvertantly caused it with the carseat buckle. If we hadn't been sent to x-ray today - we would have kept on with something that wasn't working.

I know I can handle it - but right now I just want to cry.

Friday, July 3, 2009

Family Photo

We just had our first post placement visit from our social worker. It went very well and we asked her if she would take the last photo we needed to send in with our report, which is the family photo. This is the best one we got. Amani had actually fallen asleep during the visit!

We had his third chemo treatment yesterday at UCSF and they have now discovered he has a heart murmur. They usually wouldn't be concerned, but it wasn't noticed before. They think it's new which is a concern. After he got through his chemo treatment I had to take him down the street for an EKG. We don't have the results back yet. He isn't loosing his hair and his appetite is good. One of his main chemo drugs is a steroid so we have been experiencing grumpy, aggressive, "amped up" behavior which is not typical for him. Poor guy has a hard time falling asleep and staying asleep nowadays. His naps have all but ended unless we are in the car.

We are headed out to the beach house this weekend with friends and it should be a good time.