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!!!!

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.

So Much to Report!

It has been quite awhile since I last posted and so much has happened since then. The biggest news is that Amani started chemotherapy yesterday. He also had surgery to put in a port to make the process easier for him as his veins are small and very hard to get an IV into. We will be going to UCSF once a week for IV meds and have a number of pills and liquid medications we have to give him three times a day at home. His official diagnosis is LCH or Langerhans Cell Histiocytosis. It acts like a cancer, is treated like a cancer, but isn't a cancer. I haven't quite figured that one out yet. It is very rare. He has it on his scapula and his skull. It eats holes in the bone. The prognosis is very good - there is just a chance that it can become very chronic for awhile and need ongoing treatment. We are hoping to kick it the first time.

I will write more soon, but I will leave you with a few photos.

Mother's Day, Prom, Rope Making and More

In an effort to keep up with this blog, I want to share some photos from Amani's first weeks home. In this photo montage you will see our beautiful daughter, Lauren, and her date, Max, before her senior prom. Our baby is graduating from high school in three weeks!



Here are a few shots of Amani having fun with his siblings. It is so much fun to realize, "Oh, wow, he's probably never played in a cardboard box before!"




We are home schoolers, and one of the things I like so much about it is the things you can be doing midday when everyone else is in the classroom. These are photos of the kids at a beautiful coastal property where they learned to make rope and shoot a bow and arrow. It was a fantastic day and Amani loved being outside and having his first picnic.






Mother's Day was lovely. We spent the first part of the day with my side of the family and the second with Bret's. My only mother's Day wish was that I would be given time to shower and put on make-up. My family made my wish come true! Here are some photos of Mother's Day fun, including Amani taking a nap on Sissy.





Lastly, some photos of our cute little 15-month old guy. He is just so precious and photogenic! He thinks I am so funny. I wish everyone in the house got such a big kick out of my antics.

Long Overdue 3am Mini Update

Things have been SO busy since we have arrived home. We have been swamped with doctors appointments and just catching up with life and the kids. I had forgotten how consuming it is to have a little one in the house again! We are having fun and Amani is adjusting very well. All his blood and stool tests came back great - except that he is a little iron deficient - so we are working on that. Our amazing new pediatrician wants us to do one more blood test and one more stool test. We have started his immunization catch-up - poor guy starts screaming when we walk through the door of the doctor's office. We will have to go one day and not have anything hurt him. He does have a somewhat enlarged spleen and liver so we are working to get to the bottom of that. His diarrhea is finally getting a little better, but boy has that been a challenge!

I need to post about our trip to Ethiopia. I think I am still processing. It is also so hard to blog since I usually have a baby in my arms or on my back in the Ergo during most waking hours. Right now it is 3am and Amani woke up and needed to be soothed back to sleep -so I came in here to have a minute at the computer afterward!

Here are some of the photos that we used to create our announcement.

A Few Photos

We Are Home

I just wanted to let everyone know that we made it home safely on Saturday. The baby is doing great - I however picked up a bug on my way out of Ethiopia and have been sick since the customs line at SFO! I think the Cipro is kicking in, but Lauren and Bret have been taking care of the little guy without me. I will try to post photos later today. Thank you for all your love and support. It was an amazing and trying trip and I want to tell you all about it as soon as my head stops spinning! :)

News!

Tomorrow, when we wake up, we are going to take a six-hour drive to meet Alazar's mother.
We are also coming home earlier than expected: the 18th instead of the 21st! And, we didn't even have to pay for the new ticket because the other flight had been cancelled. Just one more day before we go back home to the family!

Ethiopia

We've been here with our little boy. He is very sweet and won't let me out of his sight.
Unfortunately, we do not have running water or electricity. We hope it will come back soon!

Alazar

Just wanted everyone to know we're here safely. I've now had two days with our wonderful little boy!

On our Way to Ethiopia!

We are about to get on the plane for Addis. We will meet the baby in the morning. We will be arriving at about 10am California time.

Our Last Day in Paris

This is our last day in Paris. We take the train back to Germany tomorrow and then on to Ethiopia and our little guy!
The Army Museum

My mom at the army museum...

...and Me.



A fountain in front of St. Sulpice as featured in the divinci code?

Yum!

The Eiffel Tower. My mom and I climbed the stairs to the first level and saw the whole city lit up!

Saturday. We got out by 10 today which was earlier than we had been. We went to the pastry shop across the street. Mom got a roll and I got something called a divorce. We set off on what the woman at our hotel called a lovely 25 minute walk to jardin du luxembourg. We eventually arrived at the park a few hours later! We were looking to replace my camera charger before heading to africa. It hadn't been working. If was a wild goose chase bouncing from one set of french directions to the next. all the stores were so small and specialized. We finally made it to fnac (which was very "circuit city"-like) with the invaluable help of the shopkeeper in Vu D'ici where we bought some treats for Lauren. We ate a lovely lunch and got to St. Sulpice which was amazing. We continued to Luxembourg park which was charming! A toy boat pond. Carousel, tulips, bocce ball, chess, etc. I was able to finally understand and master the metro. We made it back to our hotel in about 15 minutes which included 2 transfers. The weather has been lovely. Today was a little cool and breezy but yesterday and Thursday were very warm. Everyone wears scarves even when we are feeling toasty. I think I have only seen one person in a t shirt and shorts (even though it was warm enough) and he was from Philadelphia! we hope to climb the Eiffel tower tonight and see the city lit up. Love. H
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Sightseeing

Today we ate strawberry crepes and took the metro to note dame. It was breathtaking. My favorite sight so far. We climbed the 400 steps to the top of the south bell tower. We then walked through the latin quarter and had a meal and then some gelato. We then took the metro again back to our hotel. We have met many nice people. The pace here is very different. In the cafes they will take your order. Awhile later they will bring your food and if you want to see them after that you'll have to go get them! Lots of smoking! Hard to come by free water. A soda can set you back 6 euros. Haven't seen an suv yet. All tiny cars and motorbikes. Parallel parkers will bump the cars in their way. Love. H & D


Here is the view outside our hotel.

At Notre Dame...

The view from the mid-level Notre-Dame tower.

gargoyles...

From the top of Notre Dame.

Thank-you for all of your blessings and well-wishes! I can still receive emails here if you'd like to send anything directly to me as Lauren is forwarding comments from home.