When Odd Becomes Normal

I was thinking yesterday how quickly we adjust our lives when new things happen. For us, going to chemo, dealing with a grumpy steroid baby, administering medicine daily, etc. has all become our new normal. I can't even remember an adjustment phase. We just moved right into our new existence, and now it is our normal.

We have just been moving right along with what we have been told to do. Because LCH is so rare, I feel like I am blindly following the doctors at UCSF. There just isn't much information or choices in treatment. I've been feeling like we are in a bubble all alone with out a lot of outside input. Maybe that makes it easier.

The other night I was contacted out of the blue on FaceBook by a dad of an LCH child. I was connected with a network for families in our position. It was exciting and all of a sudden my world felt bigger. I spent a few hours exploring late into the night on blogs and websites, but that is a double edged sword. It allows you to connect with others in your position, hear hopeful stories, get encouragement and ask questions. It also clues you into the sad stories of toddlers passing away, hopelessness and despair.

I am torn between my bubble of ignorance and the bigger world.

What to do?

What should you do when you have five kids? What should you do when you have a teenager with her first boyfriend, learning to drive? What should you do when you homeschool four kids and have a five-year-old with separation anxiety? What should you do when you have a 19-month-old son home from Ethiopia for five months who is four months into chemotherapy? What can ease the load, smooth the nerves and help you to relax?

You guessed it! Isn't it obvious what the logical thing to do is?





That's right! You should get a puppy! So that's what we did. :)

The Port

The latest medical drama is that Amani's port doesn't seem to be working. We spent over four hours at UCSF on Monday trying to get his chemo. In the end, they had to put an iv in his hand! We had the port put in so that he wouldn't have to go through that. It was very sad - but as always, he was an excellent sport. The nurses joke about how hard it is to get him upset. We are actually on another iv chemo break until September 8th. He is weaning off the prednisone right now, and is down to only 2mg a day. He will stop completely until the 8th, and then will be on 20mg per day for 5 days, every three weeks. I have labeled the calendar in multiple colors so I won't forget which medication comes on what day and in what dose. He will remain on an antibiotic every Friday, Saturday and Sunday for many more months. He will get a CT scan in December to make sure that his treatment has worked. At that point we can start addressing the fact that the little guy isn't growing. The chemo has made him gain weight, but he really hasn't grown more than a half or quarter inch in the four months he has been home. But, that will be looked into at a later date!

Here is a photo that needs no more explanation than to say, "the boy has three sisters!" And boy did those sisters have fun with this Amani photoshoot.

Brothers

I wanted to take a moment and talk about how wonderful it has been to watch the bond forming between my boys. Jordan was the little brother but never had a brother until Amani came along. It was all girls, all the time! I expected that the boys would be good playmates when Amani got a little older - but it is already starting to happen. They really love to horse around together, ride the plasma car, run, chase, etc. This was the relationship that started out a little rocky. After Amani having me to himself for two weeks, he was not at all pleased when we got home and Jordan jumped into my lap. In fact, Amani bit Jordan our first night home. Bret and I were so sad! We were devastated that Jordan would be greeted with an angry bite after he had expressed a lot of concern about my time and attention when I was in Ethiopia. There is still a little jealousy on Amani's part, but we are making it clear that there is plenty of "mommy love" for everyone.

On the health front, we are on break from iv chemo until the 17th and we are starting to decrease the amount of prednisone he takes everyday. In about two months they will do a full body scan to determine if the LCH has responded to the treatment.

I will leave you with pictures of the brothers. They are so sweet!!!!

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.

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.

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.