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. :)

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!!!!