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Hi Everyone! We finally made it back home. It's been a long, LONG day and I am so glad to be done with the biopsy.
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We arrived for our appointment right on time but weren't brought back to the exam room until shortly after 9:30. An actual doctor didn't see her until after 10am. Gabby was as charming as ever as she blew kisses to everyone that looked in her direction. Usually she is not in a great mood at the doctors office but she was a little ray of light this morning.
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The nurses prepped her arms for lots of pokes with numbing gel since they could tell they were going to have a hard time finding a vein on her. I am so glad they did because they ended up attempting the I.V. FOUR times. My poor little love has bruises all over her chubby arms but they were finally able to get the line in.
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We were taken to pediatric oncology to get the I.V. started. The room is actually quite lovely and fun with all of the bright windows and TOYS everywhere. Yet still, there is a lingering sadness that is undeniable once you walk in. As Gabby screamed her head off while the nurse attempted to get the line in, a little boy (about 5 or 6) walked over with his beautiful bald head, looked at Gabby and said, "It's okay baby. Don't cry." I immediately welled up with tears. It broke my heart. I found out later that his name is James.
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Around 11am they started administering the drugs that would help Gabby fall asleep. I was a little nervous because sometimes kids with Ds require more medication. This was not the case with Gabby. She fell right asleep! I could have stayed in the room for the entire procedure but I started getting anxious with all of the beeping coming from the monitor. It took me right back to our week stay at UCSF and I wasn't in the mood to revisit those emotions so I let them get the job done and I sat outside with James and his family.
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I was able to easily occupy my time while I waited thanks to my iPhone. I watched James play on the computer while he drank a diet coke (seriously). I am not sure what he was playing on the computer but I heard him say "oh shit" about ten times. No one corrected him and I giggled to myself. I figure he's probably allowed to say "oh shit" when he feels like it. He does have cancer after all.
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About a half hour later, the nurse came out and told me they were done with the procedure and I could come back in. I walked in and Gabby was still out cold with her tiny little hiney up in the air. They took the sample from her hip bone right above her right butt cheek.
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It took over another half hour for her to wake up and once she did, she was ready to ROCK. She literally lunged at me and stood up as if to say, "Let's get the hell out of here NOW." They watched her oxygen and blood pressure for a few minutes and then pulled all of the wires off of her. They gave her some juice and we were on our way.
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The hematologist told me she would contact me as soon as she had some results, hopefully by tomorrow or possibly this evening. Fingers and toes crossed!

I have been meaning to blog about this for quite some time but I wanted to get some good pictures of my sweet girl before I did...
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Last year I blogged about the crazy little signs I experienced when I was pregnant with Gabby. Well, last week I was spring cleaning and going through Gabby's clothes, preparing to store her winter duds and make way for summer attire. As I was folding and sorting I came upon the cutest little dress I purchased when I was pregnant, a week after I found out Gabby was a girl. I was SO excited to finally be able to buy girly stuff and I specifically remember sitting in front of the gymboree website one evening, scouring over all of the possibilities. Among several items in my cart was a precious blue dress with Tulips dancing along the bottom of the skirt. It was so different from what I would normally buy, in fact, even today Gabby has very little clothing that is not pink! But something about this dress appealed to me and I envisioned my little hapa-girl dancing around in it so I clicked "purchase" and it arrived 5-10 business days later. ;)
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Finally, at two years old, Gabby is able to wear this dress (size 6-12 months) but seriously, how sweet is she in it? I just love it.
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There is a point to this story, I promise, but just a little background info first...
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Most of my "mommy" friends know that I am a junkie when it comes to gabby-clothes. I'll be honest and call it a sickness. I can be out and about in public and recognize immediately if a child is wearing Janie and Jack, Boden, Gymboree, etc. What's worse is that a lot of the time, I can even recall the name of the specific line (I know, I know...I told you I was sick!) So anyhow, as I pulled out this precious dress last week, I immediately remembered the name of the line it came from.
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"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This poem is well-known amongst the Ds community. I doubt there is a mother out there with a child with Ds who doesn't know of it. It's so beautiful and so true...

And her numbers did not improve.

Gabby's doctor just called and said that typically, when neutropenia is caused by a virus, there should be some change by a weeks time. Gabby's neutrophils actually got a bit lower.

We have been referred to a hematologist and are waiting for a call to, hopefully, get her in this week so they can do a bone marrow biopsy. I'm terrified.

This morning Gabby had a routine blood draw. I had a bad feeling going in...not sure why. I am pretty sure it had a little something to do with mother's intuition.

As I was getting my nails done this evening, the results were automatically forwarded to my email which my iPhone immediately alerted me of. I sat there reading Gabby's lab results and I began to panic as Ken (the best manicurist around) buffed and polished my fingernails. I think he could tell something was up. I'm fairly certain I started to sweat. I didn't understand the numbers but I could definitely tell something was not right and all I could think about was Leukemia.

Children with Down syndrome have a 1 in 95 chance of developing this devastating disease. This, coupled with the fact that Gabby is ALWAYS sick with some kind of cold, had me on absolute edge.

I came home and immediately called my friend, Jenny, who is in the process of learning ALL about this stuff in med school. She made me feel much better and told me that usually with Leukemia, your white blood cells are very high, while Gabby's were actually quite low. This information didn't completely pacify me but at least I got the "L" word out of my brain for a few minutes. She did say, however, that it was evident that Gabby had Neutrophenia or a low count of neutrophil (cells used to fight off infection in the body)

The new question is/was "WHAT is causing this Neutrophenia?" While I googled my little heart away, I also posted a shout out on Facebook asking if anyone else out there in the Ds community had experienced this. No one had. Google was my only reliable source at the time considering Gabby's doctor had left for the day and no one was available to go over lab results with me. It should be ILLEGAL for abnormal results to be sent to a mother once the pediatrician is no longer available for consult. It was torture but there were many things I was finding including, Hyperspleanism, folic acid and B12 deficiency's, congenital issues with the disease, etc. All of these were MUCH better than the dreaded "L." I was feeling okay about the results until my brother-in-law finally called me back...

He explained that the white blood cells can, in fact, be low in the presence of leukemia. My high was suddenly fading. He didn't sugar coat anything, which I appreciated but basically he said we're concerned with two things: 1.) Sometimes, a viral infection (which are pretty common with the Gabster) can cause a Viral Suppression of white blood cells. This makes a little bit of sense being that Gabby has been battling a little cold for a good part of three or four weeks but it wasn't that bad of a cold, ya know? or 2.) Leukemia.

BAM! Just like that, he said it. I explained my confusion about thinking that the white blood cells had to be elevated with Leukemia but he assured me that wasn't so. However, he did say that typically with Leukemia, other things would be low as well such as her hematocrite and hemoglobin levels (which are not low but are on the lower level of normal.)

So at this point, I am just not sure what to think. I called her pediatrician and left a message with her to call me back as soon as possible and I also sent her an email. She is usually very good about getting back to me so I expect to hear from her tomorrow, for sure.

In the meantime, my brother-in-law informed me that because Gabby's neutrophils are so low, if she were to come down with a fever, we are to take her to emergency immediately. She has basically no defense against infection right now so things can get ugly quickly.

It's currently 1:15am and I am just waiting for her to wake up with a blazing fever. I am so paranoid. I have googled and googled and GOOGLED for the better part of seven hours. A lot of information is pointing to Leukemia and a lot of information is pointing in other directions. I wish her chances of getting this nasty disease weren't so high so I could relax but I guess it's my job as "mom" to freak out, right?

I thought it would be good to blog about this, and keep everyone in the loop. I hate to be all "doom and gloom" but this is what it is and I have to be real. I really REALLY truly hope that this is not Leukemia and we can solve it easily. We could use some positive t's and p's if you've got some.

I will update tomorrow once I hear from her doctor.