Beyond Blessed

This March 28th, Cambria will officially be FIVE YEARS CANCER FREE!!!!!!!!!!!!

Once again, to celebrate, we're raising money for Alex's Lemonade Stand Foundation.

Our sweet girl is absolutely thriving.

We want to help other families reach the same goal. Please join us and donate HERE

The Best Celebration We Could Think Of

Big News.....

In honor of Cambria being ONE YEAR CANCER FREE (boy do I love typing that!) we're hosting an Alex's Lemonade Stand at our local Giant grocery store!

For those of you who aren't familiar with Alex's Lemonade Stand, they're one of the best charities for pediatric cancer research. One of the ways they raise money (and awareness) is that people all over the country volunteer to sell lemonade, and then we send in our proceeds. You can find out more about ALSF here!

On Saturday March 28th, 2015 (exactly one year from hearing that her scans were clear) we'll be at the Bowie Giant on Annapolis Rd from noon to 4pm. Please come by to show your support, (and tell your friends)

If you want to donate to the cause without having to come all the way to Bowie, or to find out more about your event, you can check out our event page at:

http://www.alexslemonade.org/mypage/1121726

9 Month Scans... AND SHE'S STILL CLEAR!!!!!

We had a great day at Children's last week! Cambria got to see a bunch of her old nurses, and they all met her little sister Aurora. Cambria is still growing and learning and showing no side effects from chemo! The residual mass hasn't changed much, but that's expected at this point. Those inactive cells will probably stay there for the rest of her life... they just won't be cancerous!

Here's a bonus pic of Cambria with her little sis:

6 Month Scans are CLEAR!!!!!!

The residual mass has shrunk even further!!!! Her oncologists are SO encouraged by her response to treatment!! Especially as she's still growing like mad and is showing no side effects to the chemo!

God has been SO gracious to our family!

Mommy: And what a year it's been...

I know we haven't been updating. Our girl has definitely been keeping us on our toes!!!!!!

She's now 1 year old. She's vivacious and silly and meeting all her milestones. We're so proud of her!
Here are her 1 year pictures:

 Also... our family has some other news that has been keeping us *very* busy....

CAMBRIA IS GETTING A BABY SISTER!!!!!

Apparently things can't be "normal" in our house for too long! She will be almost 17 months old when he arrives this December. We are SO excited, and Cambria is in for a whole new world!

The Delay

So I know Derek and I are *very* behind on our updates. We have the whole week of tests to cover, as well as Cambria's AWESOME results, and the plan forward. And while Derek and I have both started posts (many times actually) neither of us have gotten there. We talked about it, and I thought I'd share.

We have been SO excited to not have cancer be a part of every day moment that we've sent it away.

We've simply been revelling in not thinking about cancer.

Thing is, we've found the blog really helps us process, and we want to have a record of all of this - including all of the emotions and thoughts at the time, so we need to get there, and we will. But for now, we're going to snuggle our little girl, and take her to meet family for Easter. For one more weekend, she'll just be a kid, and us just be parents.

Thank  you all for reading, and encouraging, and praying for us. It's really made all the difference.

TODAY IS THE DAY!!!!!!!!

Details will come soon... but for now:

Mommy: Huh... well that was unexpected...

Today has gone a bit differently than we expected. First of all, despite not getting a very good night's sleep last night, Cambria didn't want to go down for her first nap (she's been in a schedule of 3 naps per day) So instead of  "Breakfast" and "Lunch" naps, she took a "Brunch" nap. Thankfully it was a good long 2 hour nap... because she didn't nap again until we were on our way to get her blood work done.

The other weird thing about this nap, was that when Derek went to get her, she had a bit of a shiner... now, random bruises and cuts are a fairly normal thing for Derek and I, and Cambria *does* like to play a bit rough (especially with the rungs of her crib) but with the chemo, "platelets" are instantly on your worry list. Otherwise she's been her normal, playful self... (other than a few extra rounds of diapers for poor Derek, and an extra large lunch of pureed chicken afterwards) Anywho, we were glad that she was already scheduled to get her blood work checked. 

So we left the house a couple of minutes before 2, and got to Children's about 2:30 (Yay for mid day traffic!) We got to see our nurse buddies, and luckily for Cambria, the waiting room was FULL of well kiddos playing and running around while their siblings were treated. Which, I also noticed a LOT of the temporary badges, and today was a Allergy clinic day (the allergy clinic shares the waiting room with the hemotology & oncology clinics) so it was a pretty cheerful room. Cambria had a BLAST watching the other kiddos... like highlight of the week!!! We're SO excited to take her to play groups, and swim classes, and story time at the library!!!!! 

But, first we had to get her blood work done. So we went back, and had our first surprise at the hospital. Cambria straight up screamed bloody murder at the poor lab tech. Thing is, she started crying before he even brought out the needle.... so at first we assumed that she's gotten old enough that she remembers what it means when someone starts poking at your arm... but then Derek pointed out that the lab tech was a man without facial hair!!!! Since sometime in October/November, the only men she's interacted with that didn't have facial hair, she cried at! Yes, the whole being tired of being poked with needles thing makes way more sense... but you never know... 0.o

So we headed back to the waiting room to wait again. See... we had thought this was a lab work appointment and a meeting with the doctor. It turns out, all we had on the books was a lab work appointment.... but when the nurse came out to tell us that we could go and they'd call us with the results, we pointed out the bruise, and then the nurse asked if we had seen any red little dots, and we showed the couple we saw on her face as well. So she agreed it would be good to wait, and she let the lab and her oncologist know we'd be waiting. 

Here's a pic of the little girl hanging out in the waiting room, complete with sad eyebrow bruise, and if you can squint real close you can see a few of the little red dots (the one on the nose is just her scratching herself):

So at about 3:45 or so, a nurse came out saying most of the counts were in, but the platelets said "pending" which means the automated counts came back low, so the technicians were doing it by hand. By this point, I had found a few more of these little red dots (which now I know are called petechiae) on her legs, so I showed these to the nurse as well.  She said that those, especially with the bruise, were pretty good signs that her platelets were low... we just don't know how low yet. So we (sort of) patiently waited until about 5:15 when Cambria's oncologist and nurse practitioner both came out to let us know the results:

1. her ANC is a wonderful 1540, so they gave permission for quarantine to be lifted!!
2. her hemoglobin was borderline... (7.0) they asked us if she had been extra sleepy or had a lowered appetite, or less active in her play, and since she was normal and/or exuberant on all of those subjects they decided against giving her a transplant, and just having us watch her for a drop in energy, appetite, playfulness and/or interest. If any of these occur, we'll take her back for another blood test.
3. her platelets were low. 20,000. (which is their line for whether or not they automatically give platelets... like 20,000 is both the line, and her count) As she had the bruise, and a growing number of red spots (seriously, more showed up while we were waiting - it was really freaky) her oncologist ordered the platelets. 

*sigh* She was so close. To be quite clear, it is NORMAL for children on this protocol to get multiple transfusions and/or platelets. The fact that Cambria hasn't needed any blood products OR overnight stays is a HUGE blessing!!!!! Also, the fact that today was already scheduled  for her bloodwork was a gift. (Traditionally, this would have been a Wednesday appointment) But, as her platelets and hemoglobin have been good this whole time, we just weren't prepared for it.

So, once again we had to get Cambria accessed (which, as she was woken up from a nap to do it, and we didn't have the seahorse to distract her, she was in full meltdown mode during the procedure) then we were off to wait in a pod for some more bloodwork to come back so they could match the platelets with her blood type. Oh, and we got her vitals done... she's now 70cm long and 19lbs 2 oz. (Still growing like a weed!) 

Here's our girl waiting in the pod (not sure if it shows up or not, but she definitely had more spots by this point)

Finally, the platelets arrived, and we got her hooked up. Surprisingly the infusion itself only took about 15 minutes.... but then as we got her deaccessed, she took a long time to clot :-/ This made me especially heartbroken for her, as well as incredibly grateful her doctor made the call to get the platelets. Normally clotting from deacessing the port takes 2 or 3 seconds. This time it took 2 or 3 minutes. 

*sigh*

 So all in all, a very LONG day. We're SO glad her ANC is up though! And that her team at Children's were attentive and made sure she got what she needed!

Now it's time for us all to get some sleep. Hopefully Cambria sleeps better tonight and tomorrow than she did last night or yesterday!

Mommy: A quick THANK YOU!

Thanks to all of you who have donated, I did something pretty great this afternoon... I just payed all of Cambria's medical bills that we have received so far! Mind you, they haven't billed us for 2014 at all yet, but seriously - we would be in a much different situation right now without all of your support!

Mommy: Ding dong, the chemo's done!

Wooo Hooo!!!

You know, not like we're excited or anything... Yesterday was a good day :-) Cambria was feeling better, she ate not quite as much as usual, but she was eating a lot more than she did Thursday. And she was just generally happier. It was so strange to see her be in a bad mood all day, because that's just not her temperament. She wasn't even smiling at the nurses, she was just deadpan. Yesterday she was still a bit off, but she also had a lot of fun. She's been learning how to make "click" noises with her tongue, and yesterday Julia (one of her favorite nurses) came by to say "hi" and Cambria picked right up on how to make "smack" noises with her lips! It was neat :-) 

 She wasn't wanting to play very much when we first got there, but she let me take this sweet picture of her:

 Then we went back for her last bit of chemo (prayerfully for forever)!! She was tired, but didnt' want to nap, so it was a bit of a challenge getting her happy (especially as they have to take her blood pressure every 15 minutes during the etoposide) but she finally fell asleep :-) We had them give her another hour of fluids as it helped her so much the day before, so when she woke up about 20 minutes after the chemo she still had more time there. It was then that Julia stopped by, and I actually *shared* Cambria, so she got to sit on her Maz's lap awhile. Maz was playing this super interesting game on her phone, which Cambria was studying with such EPIC concentration!

And here she is, all unhooked and done with chemo!

And again, playing away once we got home: 

Love this girl!

Now, for what's next.... We go back on Monday for her Neulasta shot. (That's the insanely expensive one that makes her ache from her bones, BUT it also made her counts totally recover 2 weeks after chemo.. so  totally worth it!) Then we'll go back during the week of the  10th for bloodwork and checkup, and then our (hopefully) last long week at the hospital will be the week of the 24th. We go in on the 26th for her MRI, the 17th for the injection for her MIBG scan, and the 18th for the MIBG scan itself. Assuming those tests show what her oncologists are expecting, we'll have her port removed either the following week or the week of April 7th. (Just in time for her Grandma's birthday!)

Also, we just found out that some old BAE employee stock I have from forever ago is worth about 1000 dollars! (which, considering I was hoping for 200-300, we were SO excited!) So we've decided to use that surprise money to fly down to Georgia for Easter so Cambria can meet all of the family that lives there.