I'm ADDICTED!

Ok, so I happened across a website today called http://www.scrapblog.com/ - it's awesome! And incredibly addicting! It's an on-line, electronic scrapbook site that lets you upload your photos from your computer, facebook, snapfish, and tons of other sites. Then, you can create these beautiful pages and save/publish them. Then, (and this is good) it lets you save them as a jpeg file on your computer so you can order them as photos! So, I made these cute pages (keep in mind that it's my very first time using this site so they're not too detailed.) then saved them a jpg files and ordered them from Walgreens online. I will pick them up tomorrow down the street from my house!! I'm giddy (can you tell???)!! I'm having so much fun with this. You can make invitations, birth announcements, thank you's, holiday cards, calendars, and so much more!! Wooooo hooooooo! Ok, enough for now, check it out and get addicted yourself. Have a great weekend. xo, Pam

Avery Bravery

Send your own ElfYourself eCards

What's with this music??

In case you're wondering...

I posted a music playlist on here that comes on automatically (You can pause it, though) - these are songs that Avery LOVES! She chose them because they are all songs she really likes (please excuse any seemingly inappropriate lyrics, she doesn't know what they are saying, she mostly just loves to dance to them.)

So, I hope you enjoy the songs, because Avery surely does.

As for that cold - she still has it. It's still hanging in there, but (thankfully) not getting worse. Still no fever or anything that would send her to the hospital. She goes back to the clinic at CHOC on Tuesday for labwork and her 2nd flu shot, so the Dr. will be see her then and evaluate her ick. She's sniffly a little more today, but coughing less so hopefully this will pass soon. Her poor little nose can't take much more of this.

Both her spirits and energy have been high lately. Avery has been going on bike rides around the whole block almost every day lately - Dad is great for making sure she gets outside a lot lately. And she's getting so strong that I can barely keep up with her when she's on her bike!! Her hair is really coming in now - and it's dark!!! We can't tell yet if it will be curly again, but it looks like it will be a darker brown, rather than her sandy brownish/blonde she had before. Her eyebrows are back now, too (she didn't realize they were gone - can you imagine??)




This was taken almost 2 weeks ago, on her last visit to CHOC 11/25/08









And don't forget to stop by our official website for the latest information on Avery and any fundraisers. www.averybravery.com

And, as always, thank you for your support and love - we couldn't get through this without all of you - especially Avery's prayer warriors (and my chocolate delivery fairy). Much love to ya!

Avery's First Cold Since Being Diagnosed

Well, it's December 2 and it has been almost 8 months since Avery was diagnosed with leukemia - and she has her first cold. On the one hand we're fortunate that it seems to be a viral thing - no runny nose, no colorful nose items and no fever (thank God for that). It's just a sniffle and a weird cough. And as thankful as I am that it's not worse, I can't help but be really bummed out that she's sick.

I sort of feel like I've failed her by letting her get sick, but in reality I know that it was inevitable. We can get our flu shots, we can skip family functions, we can miss out on movies and dinners and get togethers, we can skip pre-school and playing at the park - but when it comes down to it, we can't control how many people go out in public sick. As careful as I am about washing hands, sanitizing (constantly), covering grocery carts, and everything else - it's impossible to protect her 100% - and that's the part I hate!

So, we spent the day in warm, snuggy clothes, got in a little extra couch time, drank some orange juice, bought a new humidifier, had a warm bath, a couple of books and some snuggles and we're saying lots of prayers that Avery feels better really soon.

I uploaded a new video on You Tube today from the CHOC Disneyland fundraiser walk we did on October 18th. You can check it out by scrolling down to the bottom of this blog page - it's on the You Tube video bar at the bottom. I hope you enjoy watching it - it was an incredible day for us. We are already planning ahead for next year's walk - if you would like to join Team Avery Bravery you can visit www.averybravery.com for more information. Big Hugs!

Has it really been 7 months???

Here we are in November 2008 and it's hard to believe that it has already been 7 months since our precious youngest daughter was diagnosed with leukemia and our world came crashing down. On the one hand the time has gone by so fast. But on the other hand, some of the days have been a lifetime.

Avery is doing incredibly well at this point and we are so incredibly thankful for her progress. She is in the Maintenance phase of her treatment. This phase is the last phase of her treatment, but she has 22 months to go on this one. Even though she doesn't have to go to the cancer clinic weekly any more, she does still receive multiple chemos on a regular basis. She gets an i.v. chemo once a month, chemo through spinal tap once every three months, oral chemo daily, another oral chemo once a week, and an anti-biotic three days a week. So, while it's a lot easier than Delayed Intensification, it's certainly isn't a walk in the park.

She takes it all so well - better than I could ever expect to handle something like this. She smiles a lot and is so brave and strong. I don't quite know what to make of her sometimes, she is amazing. Avery grew an inch in less than 2 months, and now she's grown another centimeter in the last 2 weeks! I guess it's all that organic milk she sucks down!?

A lot has been going on lately. We participated in the CHOC Disneyland fundraiser walk on October 18th to help raise money for Children's Hospital of Orange County, where Avery is being treated. It was an awesome experience (a little rushed, but awesome). We had about 51 team members, and our own little stroller brigade out that day. We raised about $4,100 for CHOC and can't wait to do it again next year. A couple of weeks after that we participated in the Buddy Walk for the Orange County Down Syndrome Association in support of our friends, John & Kristin Clark. That was a fun and well organized event. It was a completely different vibe than the CHOC walk and it was really cool getting to sit in the Angels dugout!

The kids have all been busy, with school, surfing, Girl Scouts, church, friends, and just being kids. And what great kids they are, seriously. They are so sweet and thoughtful (yes, they have their moments and their rooms are often quite messy, but they are genuinely good kids). I'm so proud of them and can't believe that I will not have any kids in elementary school next year. Wow!

We had a raffle fundraiser in October, that ended with us awarding a beautiful .5 carat diamond heart necklace to Dennis Nelson of Huntington Beach. Huge thanks to Trans & Lisa Baca of Princess Bride Diamonds at Bella Terra in Huntington Beach. We also had a big fundraiser yard sale - and a big thanks to everyone who donated stuff to sell, came by and shopped, brought us food, and helped pack stuff up - we couldn't have done it without you! We don't currently have any other fundraisers in the works - not that we couldn't use them. I'm just too busy to do it right now. Maybe after the first of the year we will start on the next big thing? We have been so incredibly blessed by the many gifts and donations people have made during this difficult time. Even though we haven't always had the time to send out a note, please know that every single gift and donation has been truly and greatly appreciated. You guys rock!

I hope you all have a happy, safe and healthy Thanksgiving, surrounded by lots and lots of people you love and plenty of good food. We miss you. Much love from Pam.

Avery Bravery T-shirts are now available! We are taking orders for the ridiculously cute "Avery Bravery" T-shirts. The shirts are plain white 100% cotton t's, available in Youth sizes Small, Medium and Large and Adult sizes Small, Medium, Large, X-Large and 2XLarge. The shirts are $10 each - all sizes. They are printed with the Avery Bravery logo on the front and plain on the back. For an additional $4.00 (each shirt) you can have your name or a 1 line message printed on the back (such as: Avery's Mom).

To place an order or for more information you can send an e-mail to us at averybravery@socal.rr.com. Thank you all so much for your continued support. Much love!

6 Weeks Later...

Well, it has been six weeks since Avery's diagnosis of Acute Lymphoblastic Leukemia. While we were relieved to hear this diagnosis, we had no idea at the time of what was in store for our sweet Avery.

So, now that we are 8 days into the 2nd phase of treatment, called Consolidation, we've been doing some more research. This is a link to a page that outlines Avery's treatment plan, all of the drugs, treatments, and timing - feel free to check it out. http://www.cancer.gov/clinicaltrials/COG-AALL0331

Scroll down to the Outline section, then she is in Group I, (SR-low - ALL) and within that she is in Arm II (which includes all of Arm I treatments, plus a couple of additional items). That should make for a nice afternoon light read.

Basically, what it says is that even though this type of leukemia has about a 95% cure rate, Avery faces 2 solid years of chemo. The first 5 - 6 months will be the most intense, with weekly visits to the clinic for various treatments, procedures and medications, with what looks like a couple of short stays in the hospital. At the end of that, she is in for about 18 - 20 months of "maintenance". Even during this phase she will be in daily oral chemo meds and will still have regular procedures and treatments.

Anyway, I understand now why they don't tell you all of this right away, it's a lot to take in. It's really hard to swallow, the thought of our sweet girl going through so much for so long.

She has had a pretty good week overall, though. After today's intrathecal methotrexate (chemo delivered to her spinal fluid through a spinal tap) she came home and slept for almost 6 hours! That was a first for the reaction, but not the first time she's had this chemo.

As I have mentioned several times before on our caring bridge site, Avery still has some hair, for which we are grateful. This topic has generated an undesired amount of hubbub lately and honestly, I've run out of energy for that discussion. Let's just move ahead with the fact that six weeks into chemo she still has a fair amount of hair. For most people, she probably still looks pretty normal, but to those who know her, the loss is obvious. You can see her scalp, and it's very thin at her hair line. So we don't know if she will lose it all, we assume that she will, it just may take a bit longer. The reasons this is so difficult for us to deal with are (1) she's old enough to notice a difference, we've had to actually sit her down and talk to her about losing her hair, and watch her cry at the mention of it. (2) her hair is so much a part of who she is. While we get it that it will grow back, there's no guarantee that it will be the same and her hair was a unique and special part of who Avery is - those piles of bouncing ringlets of gold that prompted strangers to stop and comment and tell her how she looks like Shirley Temple - who knows if those will come back? and finally (3) her hair loss means the difference between looking normal and looking "sick" - she is already self conscious about people seeing her as it is, I know she will be even more uncomfortable once her hair is gone. Sure, she will adjust, as all of these brave little cancer warriors do, but it just stinks. That's it. No need to respond.

Either way, we adore her and she is such an amazing girl, as are her older sister and brother. They're all great kids and I really hate that they have to go through this, but then again, I wouldn't wish it on anyone else.

Thanks to all of our supporters, you guys rock! Much Love!

Avery Bravery

On April 1, 2008 I headed off to Sacramento with our local PTA to meet with legislators and policy makers about our state's dismal budget and what it means to public education. That afternoon I talked to Don, my husband, who said that our youngest daughter, Avery, was coming down with a cold. I came home the next night and she seemed to have a run-of-the-mill cold. She had a slight fever, which was gone by the next night, nothing unusual. By the following Monday, though, she was still not eating and had lost almost 2 pounds so I took her to the Dr. He looked her over and agreed that it looked like a regular cold, her ears were clear and her lungs were clear and even though she had lost a little weight, she was still in the 90% for her age.

The following afternoon - (April 8) we noticed that Avery's legs were COVERED in bruises. She usually has her share of bruises, she likes to wrestle with the kids, jump on the trampoline, and climb in and out of the car by herself. But this was not normal - she also had a few bruises around her elbows, a coulple of small ones on her lower back, and even a bruise on her face from bumping into Kolby, her big brother. I did some research online and thought she may have developed anemia as a result of the viral infection (not uncommon) so we bought some liquid vitamins with iron, offered her more meat to eat, laid off the milk and gave her more orange juice, which helps in absorbing iron. She perked up a little, but after a few more days we were still worried about her. So I started looking things up online and trying to find out the source of her excessive bruising, that's when things got scary.

After looking things up online we had narrowed it down to two scary things: 1. I.T.P. (Idiopathic Thrombocytopenic Purpura) which basically is when you have a viral infection and something goes haywire and makes your platelets stop working right. It causes excessive bruising, because your platelets are low and can't clot. OR 2. Leukemia. The more I read the more scared we got, she had so many of the symptoms for leukemia that we were really scared. She had the excessive bruising, fatigue, she was pale, she had purpura (small purple dots on her skin) on her neck and thighs, her belly was swollen (from an enlarged spleen & liver), and she had lymph nodes like marbles.

Tuesday, April 15th - We took Avery back to see our Dr. We told him what we had looked up and why we were so concerned. He said that he was leaning more towards ITP and ordered some labwork. We waited for what seemed like an eternity at the lab for them to draw her blood, and there was so much of it for all of the different tests he had ordered. Even though our Dr. had said that, on a scale of 1 - 10, his worry level was about 2 or 3, his body language told me something different. I got the call back from our Dr. as I was pulling in the parking lot of Bailey's school to pick her up. I was on the phone with Bailey and had to hang up on her to answer the phone call from the Dr. As soon as he spoke, I knew. He said that the results of the blood tests were "worrisome" and to take her to CHOC (Children's Hospital of Orange County) as soon as possible. He said that her platelets were only about 9000 (normal is at least 150,000), her white blood cells were high, and she had immature white blood cells (blasts). I didn't know it at the time, but that right there confirmed that she had leukemia.

We took her to CHOC right away to the E.R. where they drew more blood, confirmed that it looked like leukemia, and admitted our baby into the hospital. I was numb. I remember crying as I called Don to tell him what our Dr. said, and I remember him crumbling, but everything in between there and the first night in the hospital is a big blur. I vaguely recall her having a platelet transfusion and a blood transfusion during the first night. The next day, they did a bone marrow aspiration and biopsy and a spinal tap with a preventative dose of chemo to her spinal fluid. She was pitiful afterwards. It broke my heart. The next day, Thursday, April 17th was relatively uneventful, no procedures so she got to rest a little.

Friday, April 18th - surgery day. Avery had surgery to place an implanted catheter into her chest to replace her I.V. She had another platelet transfusion that morning, and another blood transfusion right before the surgery. She did not tolerate the blood transfusion well, and developed a mild fever as a result. When they started her anesthesia, she puked so she couldn't have the breathing mask, and had to have a breathing tube for the surgery. The surgery itself went well, but got off to a late start which was really difficult since she had not been allowed to eat or drink since midnight the night before. Since she had puked before the surgery and reacted to the blood transfusion, she had to be started on 2 separate anti-biotics in order to prevent pneumonia, which was fine while they were done through her I.V. Later that day, once they made sure that her "portocath" worked fine, they started her I.V. through that and took the one out of her arm! Woo Hoo!

The Conference - That same afternoon we had our conference with our oncologist and a team of people who would be helping to take care of our sweet Avery. I couldn't take notes and I didn't really ask a lot of questions, mostly I just sat and listened. They confirmed that Avery had what's called Acute Lymphoblastic Leukemia (ALL), and believe it or not, that was GOOD news. ALL is the most treatable and/or curable of the 4 types of leukemia. For children under 5 with ALL, CHOC has a 90 - 95% CURE rate! That's right, cure. Not remission - CURE. They were still doing some cytogenetics testing which would help them determine her long term treatment plan, and the results of that are probably a week or so away. Apparently, children under 5 respond best to treatment, and the fact that her spinal fluid was clear of leukemia cells was excellent news.