Change....Again

So right after I posted our great news, yesterday we woke up to a painful lump on the back of Amani's head. I felt so numb. We had been told this was what we should expect, but somewhere in the back of my mind I had believed we were done with it.

So I had to call UCSF and they wanted us to come right in so they could x-ray the spot. I scrambled to get the kids taken care of on a day where we had concert choir, track, swimming and rehearsal to get to. Amani and I headed down to San Francisco.

They sent us to x-ray when we got there. UCSF is a huge teaching hosiptal, yet the x-ray technicians recognize us. We have been in there a lot - and Amani makes an impression everywhere he goes! Amani is the most cooperative patient in all aspects of his treatemnt - x-rays seem to be the exception. He despises being held down and made to keep still. Who can blame him? Needless to say, the x-ray process was long, loud, teary, and exhausting for both of us. We finally got the pictures and went back down to the oncology clinic.

His doctor looked at the x-rays and said there is a lesion, but the tech thinks it was there before and hasn't gotten much bigger. They are not sure why the soft tissue is having such a big reaction. Protocol is to start up another 6 week intensive treatement and a milder treatment for another 3-6 months. She said because we had an appointment next week to get his port flushed, and because the bone didn't seem to be too thin, we could wait another week and see what happens. We will go back in next Tuesday and find out what we are in for, or not in for!

In the end it was better news than I had hoped but I feel so drained and sad. His face is just starting to clear up. His little body has been so slammed for so long. Maybe the week will bring a miracle. we will take all the prayers we can get.

Done! (At least for now)

Our latest and greatest news, (as we approach our one year anniversary of becoming a family of seven), is that we are done with chemo! It may not be forever, but we are hopeful. Our little trooper has been bombarded with chemicals, oral meds, scans, x-rays, needles, biopsies, surgeries and more since last June. Poor little guy had only been home for 6 weeks when this whole thing started. We are thrilled. He has been chemo free for about six weeks now and he is doing great. The molluscum is doing odd things on his face, like bleeding and scabbing, but we are hoping that is because it is leaving. I am so excited that his body is getting a break. We will be going to UCSF once a month for his port to be flushed and for them to look at him and make sure he doesn't have an lumps or pain - and everytime it looks good - we are free for another month!

Jordan's Nap

The kids have had some very late nights this week and they are all very tired. I usually try to have about an hour of "quiet time" for them while the baby is napping. Today Jordan was so grumpy and weepy that he lost it when I said it was time for "quiet time". I felt bad for him. He was devastated. I walked him to his room and showed him that he could play with Legos or his new magic set. I offered about ten suggestions and then started to leave. As I was closing the door I said, "You could also lay down and take a little rest." Oh, sure! But a mom has to try. I knew that was what he needed but I didn't feel inspired to force the issue. I waited an hour and just went down to let them know that they could get back to playing together, and this is what I found. He was fast asleep, snoring- burried beneath a blanket and a nerf toy that looks rather like a large, round face. My little guy!

Some of This and That....

The kiddos staged an impromptu black-tie dance party in the familyroom this morning. This photo shows Avonlea trying to console her suited up brother after Amani refused to square dance with him. :(





Iknow that a lot of bloggers are working on the one photo for everyday project. I would love to participate -but I don't have much faith in my follow through right now. I will try to post more this year than last, and occasionally post just a photo when time is short.

HEALTH UPDATE:

Amani is doing very well. He is happy and his blood counts are always good. After they found the last lump on his ckull, we went back to an intensive chemo every week for six weeks. Now instead of dropping to every three weeks like we did last time, we are going every two weeks. He had the two weeks around the holidays off which was very nice. He did spend the first week getting the medicine out of his system but it was great not to have to drive to UCSF. He will go back tomorrow for his next dose of chemo and we will start a five day dose of prednisone. He seems to have a rash around his mouth that is "wart-like". They are all around his chin and near his eyes. The doctors say that they will go away when his body is better able to fight them. He's still about as cute as they come!

Not So Good News

On Tuesday I noticed a bump on Amani's head. It was above his right ear. The little guy is ALWAYS bumping his head. We joke that he should wear a helmet! But something about the location and something in my gut was telling me it needed to be checked. I called UCSF and they wanted to see him right away. I quickly switched gears from what I had planned for the day, got Bret on board to watch the kids and set of for the city. When we got there they sent us right up to x-ray. I have spent enough time there that I feel like I can read the technicians pretty well. I have been right most of the time, knowing whether it is good or bad based on their manners, facial expressions, etc. I was feeling like it wasn't good news. I didn't want to get worked up though. It was very likely an injury. Right? We went back downstairs and had to sit in the waiting room before seeing the doctor. I felt like I was going to throw-up. When we were called in to see the oncologist, again I could tell. It wasn't good. She said she had bad news. It was hard to catch a breath. It is another lesion on his skull. It was able to grow during treatment. We are back to square one. We have to attack it again. They raised the dose a bit and we are back to the clinic for chemo every week and steroids three times a day. It is disheartening. We went back today to get started. He also had to have full body x-rays, again. His tiny body is really being out through the ringer. What will all this radiation exposure mean for him down the line? I had to hold him down. He cried and screamed. He is a great sport about everything, but doesn't like the scans or x-rays. He may also be getting tired of the whole scene. The nurses adore him and shower him with love and compliments. They think he is gorgeous. In a few days he'll be puffy and uncomfortable again. His treatments will keep going with no clear end in sight. I need to get back into a good spot about this. I feel so tired and discouraged. I'm sure it will all look a bit better tomorrow.

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. :)