LOTS more pictures, but not all on here yet

Anthony (around 9 months or so) and Matt

As you can see on the date/time stamp, this was about a month before our leukemia diagnosis.

I have this picture in Anthony's picture book we carry in his diaper bag. Every time I see this picture, I stop and wonder if the leukemia was already raging in his little body.

Leukemia diagnosis story~

I'll backtrack to Anthony's early, early babyhood. Anthony has Down syndrome, and was born with Tetralogy of Fallot, a heart defect that required open-heart surgery at 3 months.

He did fantastically while healing, and we were pretty much told not to do anything special as far as health precautions once he reached about 9 months. We just needed to come in once a year for heart tests.

I was still paranoid about him getting sick, so we used sanitizer often, and I was careful about who I allowed to hold Anthony.

A few weeks before Thanksgiving 2009, it had been just about a year since the heart repair. Anthony started wheezing and coughing. I took him in to the doctor often (and even the ER twice) because something didn't feel or sound right. The doctor couldn't hear or see anything that would cause it, so we agreed it was likely a slight cold or croup.

It seemed Anthony was feeling ok on December 1, so Andy and I decided to go Christmas shopping at the mall. Anthony slept in the stroller. We made it to the other end of the mall from where we were parked when Anthony woke up. He was crying and couldn't quite catch his breath. Since cold, sharp air is healing with croup, I had Andy carry the baby around the mall outside, to the car. It was cold outside. By the time I met them at the car, Anthony still couldn't catch his breath all the way, so we decided to go to the doctor's office.

In the car, his lips changed color just slightly and he would just seem to nod off instantly. I had Andy drive faster, and we went straight into the ER instead.

The nurse took Anthony's oxygen rate, and it read at 60%. She looked at the machine in shock (they freak out at readings of 80%), and jumped when I asked if it was accurate. She very quickly took us straight back to a room and turned the oxygen on full-blast with 15 liters of oxy.

This time, they had a portable x-ray machine come in, and it found something that looked like pneumonia on his lungs. Further testing was needed (remember it was H1N1 scare time), so blood lab work was done.

We were scared, thinking it was evil, bad pneumonia. Anthony was admitted to our local hospital for the night, and we thought he'd be there for a week maybe. That night, his blood sugar reading was over 400. They thought he might have the onset of juvenile diabetes and were ready to life-flight us over to Seattle for that. That can be a life/death situation. That was found to be from the glucose (I think) drip. Once they flushed Anthony with other fluids, he was fine.

Yet, the doctor was worried about the lab work. We thought something had contaminated it. He ordered the lab work be done again.

With the confirmation of numbers in the 2nd batch of labs, we were given about 20 minutes to be ready for the ambulance ride to Seattle the next morning.

Our lives were turned completely upside down.

And, that was with the knowledge that we might have to be in Seattle for a few months. Later we learned it would be a minimum of 6 months, then 8 or 9 months, then 12 months, and now we have determined it will be a total of 14 months in Seattle for intensive chemotherapy treatments, then monthly visits back to Seattle for 3 years to make sure the cure rate applies to Anthony.

The picture below shows the IV our local hospital finally was able to place. They tried so many times with different veins, and they all kept not working. Anthony was black and blue when we arrived in Seattle. His IV team in Seattle had their jaws scraped off the floor after seeing his IV under that yellow sock. We have a pretty advanced medical community locally, but they were able to get another, better line in after we arrived. It worked until he got his port.

At our local hospital, Anthony kept trying to eat the oxygen tubing. His chest has that lump as where the sternum is healing. The heart surgeon said that it will flatten out in a few years, but it is completely normal to heal as a lump.

In Seattle, Anthony loved Josh's light saber.

Josh had recently bought another light saber and he and Anthony had fun together with them. When we thought we'd be in Seattle for a few weeks, I asked Josh if we could bring the light saber with us since it was already in the diaper bag. Josh knew Anthony loved the saber, and I could sense his hesitation, but he was more than willing to sacrifice and let the baby have his toy for a time.

Nana came to visit us the second day in Seattle!

Anthony's temporary IV was under the red sock. This picture is right before he got his port placed.

Fresh after a bath. :)

Light saber fun in the high chair.

The cutest little toes

We spent most of December in the hospital.

After Anthony had been stabilized, we were able to walk around the hospital with him in the hospital strollers and his IV pole in tow. I walked MILES around the Seattle Cancer Care Unit at Seattle Children's Hospital.

One of the strollers was a little rubbery and helped his hair come out sooner in back. The nurses said he looked like a little old man.

Christmas Eve we finally had permission to shave his head, for comfort.
After his shave, we put on this hat Andy found. It lasted about 20 seconds before he had it off.

Christmas Eve was another frustrating time. The day before, I was informed that his bone marrow test had tested borderline for being in remission. The goal with this kind of leukemia is to get it completely in remission the first month, then do the few years of treatment to prevent it from recurring. Anthony was on the good side of borderline, but the pathologist was nervous about it, so we all agreed that it would be better to act conservatively and treat him as if he were a "slow responder" to treatment. This means more intensive chemo, and for a longer time in Seattle.

The first big change in chemo was that Anthony needed a 6-hour chemotherapy administered on both Christmas Eve and Christmas Day.

Christmas Eve, our family was together for a total of about 2 hours at the Ronald McDonald House in our small room. We were grateful for that short time even. Looking back, I should be grateful that we weren't inpatient in the hospital again.

Do you see the ugly orange poison going into my baby while he sleeps on Christmas morning?

But, it's saving his life.

Visiting Grand-Nana a few weeks later.

All bundled up to go on a walk.

New Years Eve at the Ronald McDonald House.

We ended up going back to the hospital that night.

Anthony's cheeks were very large at this point because one of the chemotherapy drugs is a steroid. Steroids cause a LOT of hunger, and patients get very puffy for a time.

Anthony is almost never wanting for attention.

We got to meet Mickey Mouse at the Ronald McDonald House earlier this year!

Anthony loves to crawl under the beds at the RMH.

Very early in 2010, Anthony had a seizure where he wouldn't respond at all.

He was admitted and lots of tests were administered. Nothing could be found to be at fault, which is good.

The EEG was interesting. The pictures below are how they prepare a patient for the test. It takes a LOT of time to prepare, then the test itself doesn't take much time, from what I remember.
There was a little electrode kind of glued to his (bald) head for every one of those tiny wires.

Anthony wearing the awesome hat that Jen had her friend make for him. We get so many compliments on this cute hat!

Playing on the floor with Daddy.

Following the big kids in the playroom downstairs at the RMH.

After being in a hospital crib for almost the entire month of December, Anthony had to relearn how to crawl. He is now cruising around furniture again, and I'm confident he'll be walking soon.

He had fun in the bathroom one day.

In the downstairs playroom again.

Smooth, bald head in the spring. Everyone in Seattle would rub Anthony's head because it was so smooth and soft. It is a perfect bald head.

Eating cake on Daniel's birthday.

Andy found a package of 100 balls on clearance for $2.50, so Anthony had his own ball pit in the crib in Seattle. He had so much fun with them. :)

There are still many, many more pictures to come. This takes forever!

Adoption Day~November 12, 2010

Anthony's Adoption and Leukemia story--Abbreviated version

~INTRODUCING~

Anthony Mosiah

Everyone asks, so they must be curious. Here’s the quick version. ~~

Andy and I were never supposed to be able to have children. After 5 children within 6 years, the doctors said no more. It was so hard on my body, and we were fine with being done.

I started having dreams about missing a child. I would count our children all the time (they were small, making sure they were safe), and it seemed like 5 wasn’t the right amount to be counting to. One solution was to become licensed as foster-to-adopt parents. The plan was that, even if we didn’t find the right child to adopt, we’d be helping a child in need, and it might help my dreams go away.

After Anthony was placed with us, my dreams stopped, and we are all content.

Anthony is now 2 years old. We knew that Anthony has Trisomy 21 (Down syndrome), as well as a heart defect called Tetralogy of Fallot. Even with these challenges, we knew that our family, community, and all our friends and resources would be a benefit to Anthony. They were and still are.

Anthony did spectacular with his open-heart surgery at 3 months old! He continued to do so well: developmentally, physically, emotionally, and socially.

After having unusual symptoms for a few weeks, Anthony was finally diagnosed with Acute Lymphoblastic Leukemia on December 2, 2009. He and I were rushed by ambulance to Seattle, where we have been since. A longer version of Anthony's diagnosis story can be found here.

ALL is the best kind of cancer that he could possibly have, as it is the most common occurring in children. There has been a LOT of research done on ALL, and the cure rate is over 90%. To get to that cure though, Anthony has had to endure over a year of treatment in Seattle, and will receive monthly maintenance chemotherapy for 3 additional years, starting in February.

Our family has lived in separate households now, for the past year. Andy, Daniel, and Kelly have stayed at home, while the younger children have stayed with me at the Ronald McDonald House in Seattle. The olders visit us youngers about once a week.

During the year, Josh, Lilly, and Maggie have attended a special school for patients and siblings. The children enjoy their very small classes, the awesome staff, the urban experience (school is in downtown Seattle), and all the exciting field trips!

This year has been rough, yet so many people and organizations have made things the best that they can be in this kind of situation. Through their service, we have been able to realize that our family actually has a better situation than many. We have an illness with an almost definite cure, we have our family, Andy has a great job, the children have made new friends and so have we, and we have our health.

Most exciting news from this year~~Anthony is officially part of our family now!

Pictures to clean out the camera before tomorrow!

Ok, I'm putting up all the pictures that I can before tomorrow.
There are so many of the baby (at least 300!) that I think I'll post 50-100 each day for a few days, as soon as the adoption is final. Although, who knows, I might post them all in a day to just get it done.

The pictures got in a weird order. The above picture is the sundial mentioned near the bottom of this post.

The younger children and I are visiting home again, for the weekend, for the adoption.
Maggie's best friend lives next door and came to visit tonight for a little bit.
Lilly, Shy, and Maggie did the computer.

Maggie and Shy

Kelly gave me some interesting poses earlier.

She made the cranberry scarf.

Auntie Jenny came to visit us in Seattle a couple days ago.

She brought some goodies, and the girls enjoyed making spiral designs that evening.

When we visited home last week (all week!), I woke up to this glorious bright yellow outside my bedroom window each morning. It just glowed!

Now the tree has lost a lot of color since the weather took a turn for the colder.

Last time we visited home, Josh made a sundial in the front yard. It was 3PM.

Lilly was laying under this quilt, all bundled up.

It's almost here!

Adoption day is Friday!!

For other Ds families, has anyone suggested orthotics for your child with Ds? If you have knowledge/experience with orthotics, could you email me with ideas of what to ask and watch for?