The adventure of the CBC

It’s not really that exciting of a story, but I’ll do my best to make it sound exciting and last way longer than it needs to.

Today we left our hibernation and went to see Dr “Oldman” (Goldman) to have Emma’s routine blood work done.

In preparation for the 45 minute drive, I covered TS with towels since he almost always pukes after a very long drive. I encouraged him to look out the window if he felt sick in case it helped. I was excited when we got to the hospital and pulled him out that we was puke free!! YES!

But Violet wasn’t. She puked on her shirt. That’s the first time she’s ever done that. I think that proves that there is a puke quota that will be filled no matter who fills it. I was able to get her shirt off of her without getting very much of it in her hair, and we went into the hospital with a shirtless baby (which got lots of looks!).

When we got to the elevator, TS kind of spazed out. For some reason elevators scare him. He has a hard time actually stepping into it. Maybe he looked down that crack and saw all the empty space or something.

I had already gotten on with the baby. Emma was almost on when TS started going the other direction. A nice lady held the elevator open for us while I chased & grabbed TS and tried to get him on and make the elevator seem exciting. The lady helped too. TS seems almost convinced that it’s fun. It’s always fun to see how people around try to help little kids feel better!

Anyway, we got up to the hem/onc floor and Tyler was waiting for us. He took work off to come, which he hardly can ever do.

Emma weighs 26.5 lbs now. Amazing! Our little 7 yr old is going to break a scale soon. And she is 39 inches tall.

When the phlebotomist came in, she said it was just a finger poke this time. She let Emma pick the finger. Guess which one she chose? Yep, the middle finger, which she held up nice and tall as though she was flipping the lady off. It was funny. Emma has no idea what that means, of course.

She didn’t cry at all through the poke! Yippee! She still talks about how Wesley (her FA buddy) doesn’t cry when he gets pokes, so it’s fun that she thinks about that…and maybe that’s helping her get over her fear some.

Then we talked to the dr about some swallowing issues Emma is having. She always puts her hand to her throat when she swallows (has been going on for weeks) and holds her head a little odd as though it’s hard to swallow or uncomfortable or something. She does it without thinking. We might go see a specialist about that in case she’s having some issues (any of the FAmily reading this, if you have had similar experience please share).

We also talked about starting Emma on androgens (steroids) to hopefully help boost her blood production. Transplant is a very scary thought to us, especially since FA kids with lots of abnormalities statistically have a poor outcome from a transplant…so we’d like to try other treatments for as long as we can.

Her blood work normally takes 10 minutes to come back, but it took maybe 30 minutes. Turns out once platelets go under 40, it’s considered to hit a critically low number and the lab had to call the dr for some reason.

So, for all you other FA families who haven’t reached a critically low platelet count, it appears to do that once it goes under 40. Her platelets are at 39 now. We’ll be going back in six weeks to test again, and if they are lower, we’ll be starting her on the androgens right then. At 20 they generally will transplant. We’re wanting enough time to give the androgens time to work. Or if this specific one doesn’t work, then we want time to try other ones.

We’ll be trying Danazol which appears to have much fewer masculinizing effects than other androgens. That’s something we’re concerned about since Emma is a girl. We’d like her feel comfortable with herself. If we can, we’d like to avoid any of that for her. So, lots of prayers that when we start the Danazol that it will work so we don’t have to try another kind!

Here’s the rest of her counts (normal range is in parenthesis):

WBC 3.7 (4.5-11)

RBC 2.78 (4.00-5.20)

HGB 10.20 (12-16)

HCT 29.20 (39.2-46.00)

MCV 105.40 (78-102)

PLTS 39 (130-400)

ANC 1960

Then we got yummy Chinese food and went home. Emma said she actually had a good time at the doctors! The dr sat in there with us for a while and just hung out. He quoted “Where the Wild Things Are” to TS and just had fun with the kids. He doesn’t act like a normal dr. He’s so caring and kind. I’m so glad Emma has a dr like him. Their whole office is great. They seem to really care about the child and not about getting you in and out as fast as possible. Makes all the difference sometimes;-)

Weekly Update

I realize I’ve been neglecting our blog lately.  I get so caught up doing other things (like being a spy and such) that I don’t always stop and take the time to record my children and all the embarrassing things they do so that I can blackmail them in the future.

I write notes on paper as I observe them doing funny things.  That way I don’t forget them.  The key is to remember where I put the paper…

At the moment, I can’t remember where I put the paper.  But I do remember one little funny: 

The kids were playing in the bathtub.  Violet likes to pull up the plug and let water out.  One time she did it slowly, and it made a really loud, deep, slow creaking noise.

TS said, “Was that a cow?” 

Yes, it was a cow.  We keep it in the drain and sometimes it starts mooing.  I thought it was such a cute little thing for him to say.

The past 2-3 weeks we’ve been sick.  It’s been slowly traveling through each of us and kind of lingering.  It almost seems like we’re getting sick again.  We need more vitamin D!  (just now learning how good that is for your immune system.)

My mom came and visited for a couple weeks about a month ago.  That was really fun.  I still have photos that I need to, but will probably never, post.  It was really fun having my mom around and we’re excited to see her again in a couple months. 

KIDS UPDATE:

Violet:  She is a very expressive and intelligent little girl.  We tell her to do something, she knows exactly what we mean.  She’s figured out how to run and loves to run away from me.  It’s really cute.  If I start laughing, she’ll laugh too.  She loves to say “bye” and now she says “hi”.  She can say mom and dad and yes and no and other little words that I can’t think of.  She seems to understand most everything we say.

TS:  He is a little handful.  He’s a sweet little boy who likes to get into everything.  He can wear me out some days!  He’s working on his obeying abilities.  He occasionally tries to put me in time out too…so I guess I need to work on my obeying abilities?  But he does most things with a sweet temperament.  He’s very “boy” in that he likes to turn everything into a light saber and kill the bad guys.  By everything, I mean, legos, spaghetti noodles, his finger, rolled up paper…pretty much anything.  He speaks REALLY well and says some of the funniest things.  Where is that paper of mine?

Emma:  She is really interested in the tooth fairy coming to take her tooth.  She hasn’t lost any teeth yet, but every day (since she’s turned seven), she tells me that her teeth are almost going to fall out.  But none of them are loose yet.  Hopefully some day soon one will get loose!  It’s so cute. 

Oh, I just remembered another funny:

One day, Emma & TS came into the front room.  Emma was wearing a dress and TS was wearing overalls with no shirt on underneath.  Emma informed me that they had just gotten married.  Did you know when you get married, you are supposed to run?  Well, you are.

Later on that day, Emma was mad at TS for something and told him she didn’t want to be married to him anymore.  She said it like it was the worst thing she could say.  He didn’t like that (he has no idea what it means to be married).  But she just wasn’t interested in his attitude. 

I wonder what she’ll do when she learns she can’t actually marry TS.  Actually, she’s frequently told us she is never getting married.  According to her, she won’t be getting bigger but TS & Violet will, and they will both get married and have babies.  She told me she doesn’t want to get bigger.  She always wants to be little.  Guess that’s a good thing…since at 7 years old she still only weighs 26 lbs!

Please keep Charisse in your thoughts & prayers.  She is having serious liver issues that need to be resolved.

Well, I should go and get the baby to bed.

Hope you’re all doing well!

Yes, I would consider this begging.

My sweet Victims…

Let me start again.

My loyal blog readers,

I have a request.  It’s a very important request with a time limit.  The time limit ends today at 3pm eastern time (only sort of – it actually lasts all month).  If I have your email address, I’ll also be emailing each of you in hopes you read this in time!

So, here’s the deal:  As you know, Emma has Fanconi anemia.  It causes bone marrow failure & cancer.  It’s very rare and very deadly.  There are some treatments out there that can extend life, but we NEED MORE.  We need IMPROVED treatments.  Too many children are dying.  These past couple months at least 5-6 children have died from transplant.  When you consider that such a small amount of children (maybe 10-15? I don’t know for certain), go through transplant at a given time, 5-6 of them dying is a HIGH percentage.  It’s given all of us quite a shock…

Many more children have died in addition to this, and many more will die (my baby included), and it’s not okay.  We need to DO something.  The only thing we can DO is to fund research.

Now here’s where I start begging you…

We have a very unique opportunity at a chance to win money for research. There is a month long challenge going on where people can donate to a cause (such as the Fanconi Anemia Research Fund), and the cause that gets the most donations on a day gets $1000.  Then the cause that gets the most donations over a month’s time gets $50,000.

Last year we won $50,000, but it was QUITE the fight.  Today we are trying to win the $1000 reward…and hopefully at the end of the month we can win even more. 

We need you to help! 

All we need is a $10 donation per person/credit card number.

Important things to know:

- If you would like to donate more than $10, please consider donating on separate days to help us get more donations.  For example, a $20 donation on one day is considered one donation.  A $20 donation given over two days (so $10 one day and $10 the next) is considered two donations.  If you donate $100 over ten days, that counts as 10 donations.  And in order to win for the whole month, we need the most donations – not the largest dollar amount.

- A day is from 3pm-3pm EST time.  So, if you donate at 4pm on one day, don’t donate again until 3pm the following day in order to have it count as two donations.

-  If you and your spouse have your own credit cards with different numbers on them, you can both donate.  If you only have one card (so only one number), it will only count once even if you both use it and try it with separate names.  If you have more than one bank account, you can donate again (on the same day) and have it be counted more than once.  Basically you can donate as many times as you have different credit card numbers, per day. 

Even if you’re too late for donating today (before 3pm), please consider donating still!  Every donation we get helps us get closer to winning the final prize.

If you would like to donate, go here:

https://www.causes.com/fb/donations/new?ts=1256401418&cause_id=371794

If you feel comfortable, please pass this along to all your family & friends.  Please let me know if you have questions.  Just leave a comment, and I’ll get back to you asap.

And thank you all SO much who help!  None of this research would be possible without family & friends like you.

Thanks!