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.