Our One Year Anniversary!

On Sunday we threw a huge "Adoption Day/ Belated 2nd Birthday" party for Amani. We must have had between 50 and 60 people come to our home to celebrate our amazing little guy with us. We had our local Ethiopian restaurant cater for us so that friends and family could taste the wonderful food. We took up a collection for Numan Orphanage and raised almost $300. Bret, the kiddos and I all wore our traditional Ethiopian outfits and got some great family photos. I had hoped that the party would also be an "End of Chemotherapy" celebration - but we are praying for that to happen soon.

I was remembering the day we landed in San Francisco, and how I had never been so happy to be standing on the ground in America. We had an amazing trip, but it was almost three weeks long and I was so homesick. I was so done flying. I was so done with blow-out diapers. I was so done with not having my husband or children with me. I ached for the familiar. I wanted to kiss the ground when we landed. As I stood in the customs line with my precious little guy in the Ergo, I was finally safe enough to let my wall down and it hit me like a ton of bricks. Not only did the emotions start flowing, but I got sicker than I have been in my whole life. I had to get down on my knees as I waited for our turn. I was going to pass out. The room was spinning. I was sweating. That loud hum was filling my ears. I knew I had to make it through that long line to make it to my family on the other side. I barely made it, but I did make it. I collapsed into my husband's arms. Cried into the hair of my four beautiful children who had lived for three weeks with out me. I made it home. Passed off a thankfully happy, instantly at home baby, and went into a dark bedroom for three days. I took Cipro, vomited, cramped, and used the toilet often (sorry!). I worried about Amani and how I was probably messing him up for the rest of his life - but it was a fog of illness that I couldn't break through. After three days I reentered the land of the living and everyone was fine. They weren't scarred for life, and we moved on, becoming a family of seven.

The memory is so fresh and so filled with pain and elation. It has taken me until this marker of one year to really let myself go back and remember exactly how our homecoming went down. :)

Back to UCSF

I realized this morning that I had updated our status on Facebook, but not here on the blog. The last thing I said was that the oncologists were giving the lump on his head a week to see what would happen. Well, what happened was that the lump got bigger and more painful. By Saturday it was so bad that we called the doctor on call and they told us to start him on a round of prednisone. At that point we were pretty sure that our Tuesday appointment was going to be an iv chemotherapy visit - and it was. On Tuesday we started all over again, for the third time. He is back to three oral medications daily and iv meds once a week in clinic at UCSF. We are very disappointed but not shocked. His molluscum is getting worse already even though its only been a few days. It was really clearing up on his face, but now he is starting to get a bunch more around his eyes. His sleep is hard right now and his appetite is diminishing - but the kiddo is happy most of the time.

The doctor says we will be at this round for 4-6 months and then we will see. I have taken him to every appointment for the last 10 months with the exception of one. I have asked Bret to take him this week. I just need a little break from the children's oncology clinic. It can be such a sad place. I am going to take Av, Olivia & Jordan rollerskating.

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.