Finally an update! (10/10/14)

I have been meaning to post an update on Audrey's health for months now. Since the last update she has had two sets of rescans. With each scan the tumor has appeared smaller and is the tiniest little nothing at this point. Her hair has come back nice and thick and is finally about long enough to put in the teensiest pigtails! We just celebrated her 2nd birthday on the 5th (actual bday Oct 3rd) and boy did we have fun! She is completely on track for growth and development and has certainly continued to develop a unique personality. Her favorite things lately have been going to story time with Grandma and Little Gym with mom or dad. 

I believe since we posted she has also had two follow ups with her cardiology team. Audrey is still taking the heart medication she has been on since she was a month old. At our last visit, however, the doc suggested we can start tapering her off at her next appointment in 6 months. This is AMAZING news as they had prepared us for years of this medication. To think that we could be at the point that Audrey is on NO medication is beyond exciting! At times when Galen and I really sit and think about how much we have been through with our little Bug it is a little overwhelming. Audrey has overcome so much in such a short period of time and never has her demeanor changed. We still get comments on her easy going attitude and though she can be plenty sassy and opinionated we are so blessed that she is such a positive and laid back kiddo.

At the end of April we took a quick trip to Disneyland to celebrate the end of treatment and Audrey's recovered immune system. It was a fun and exhausting trip and we will be sure to return when Audrey can appreciate the experience a little more. We also had an amazing beach vacation this summer at the Oregon coast and Audrey couldn't have enjoyed it more. What kid doesn't love a sandy beach!? We just recently took her to her first baseball game to see the Mariners play for the last game of the season. She loved it! The cheering, dancing around and charming all of those around her was right up her alley. Meeting the Moose was not on her list of things to do apparently so we quickly stepped away when mommy got us too close! 

Her next set of scans should be end of November and then again Feb before they are spaced out to 6 months apart.  We are very much looking forward to celebrating this Holiday season as the last two have been a little tough. 

We will try to post again soon but likely after her next scans. 

Thanks for following our story! 

-Shannon, Galen and Audrey

It has been a big week at the Bennett house! Tuesday Audrey had her scans completed. She got both a PET and CT scan and had to be put under anesthesia as they performed them. We went into the day pretty confident as she had done such a great job 3 months ago drinking her contrast. Well let me tell you, she is 3 months older and more opinionated! She was NOT having the contrast. We could only give it to her with water so after 2 sips she was over it. We even had the child-life specialist come by with some distractions to help get her to drink some but she was not fooled! Finally our last resort was to mix with (cringe) sugar free crystal light. This got her to take a little more but not much. We were able to be there as she drifted to la-la land. It is a little difficult to watch as she goes under but we would much rather be there than have her with unfamiliar people as she dozes off. She woke up in a pretty good mood and we went about our day.

Wednesday we got to meet with Dr. Park, the neuroblastoma specialist. She told us how fabulous Audrey's scans looked. Once again, nothing shows on the PET scan as the cancer is not active or growing. The CT scan didn't show a ton of change from the last scan but what is left is quite small, about 1 cm X 4 cm. Dr. Park explained to us that this is essentially leftover calcification and like a scar- will probably always be there. She was so great at answering our questions before we even got a chance to ask them! She is very knowledgable and passionate which really puts us at ease. There are a handful of more serious side effects that can be seen from the treatment Audrey received, as I believe we have mentioned before. Hearing loss, heart damage and another form of cancer, leukemia, are all possible but mostly unlikely. After we met with Dr. Park, Audrey had her bone marrow aspirate. Even though there was nothing in her marrow before, they like to double check at the end of treatment. She had to again go under anesthesia as they removed samples from her right and left side of her lower back. This time coming out of anesthesia she was a bit crabby and it took us a little longer until we were good to go. She didn't seem to be in any pain from the procedure and was much better once she got another nap in.

Thursday daddy and gramma took Audrey to her cardiology and audiology appointments. She was able to see Dr. Albers who is her main cardiologist. The doctor decided to do a quick echo as Audrey's last one had slight variations. She felt good about the results and sent us out with instructions to follow up in 3 months. Fortunately the heart medication that Audrey takes has some protective benefits which will help guard against effects of the chemo. Since Audrey's heart function has maintained, we are essentially back to our original treatment plan for her cardiomyopathy. Audrey was a total rockstar at her audiology appointment. They were able to complete tests at high frequencies that they normally can't get with children her age. Her results looked great and we won't check again for a couple of years.

Today Audrey was scheduled for her line removal. We had to get up really early to be at the hospital by 7am. Fortunately there wasn't much waiting around and we met with the anesthesia team as well as Dr. Hawkins, who completed the procedure. I was there again as Audrey went under and they were so impressed with how well she tolerated it. Clearly they don't understand how much of the hospital this kid has seen! The doctor told us not to go far as the whole thing is very quick. He had explained to us beforehand the risks and also that the line would leave behind a little "cuff" that would stay in Audrey's upper chest. Well a few short minutes after we walked to the waiting room we were paged that they were done. Dr. Hawkins said it was flawless and the little cuff even came out with the line. One less thing to worry about! We were brought back to wait for her and as they walked me back to the recovery room I could hear Audrey screaming. She was not a happy camper. They had her on a blood pressure cuff, pulse ox on her toe and an IV in her foot. She wanted it all off and I can't say seeing mommy comforted her much right away. Luckily there weren't many other kiddos in the recovery room because Audrey would have brought them right out of their little sleepies. We got her settled down and slowly everything came off. Her IV came out right before we left and the line is gone! We feel so free not that it is out. No more flushes with heparin and saline every night. No weekly dressing changes. We have to keep the site covered for about a week as it heals but then it is big bubble bath time!

Galen returns to work next week and gramma will take over watching Audrey. We are so excited to get out and about and really do all the things people normally do with a toddler! We are definitely ready for the weather to warm a bit so we can spend some time outside as well. Truly, the last 6 months have went quickly. Audrey has shown us how determined she is and has given us such perspective on our life. We cannot imagine how it would have went if both of us had to work throughout her treatment so once again we want to thank all of those who supported us and made it possible for one of us to be with  her the whole time. Thank you for the thoughts, the prayers, the messages, the dinners! We are so blessed by all of you. We are confident that Audrey has some pretty important things to accomplish in her life as God has given us a tenacious little fighter!

Thanks again,
Shannon & Galen Bennett

Last bath with the Hickman line!

Being super silly with my new tickle book!

I love my puppy dog jammies

Well, we are officially done with chemotherapy! Though we are beyond excited, we are saving our celebrations for after rescans and line removal. Audrey had her last cycle on Thursday which was a one-day infusion. She was very patient all day until she got over-tired and nauseated at the very end. We made sure to tell her docs/nurses when she needed her second dose of her anti-nausea medicine (as in we told them a couple of times the day prior as well as a couple of times the day of). Somehow we were still late with her second dose so we barely avoided her getting sick. I guess when we said 6 hours they heard 7 1/2. We have been keeping the med going round the clock and she has really been tolerating the cycle better than she has before. Mainly we just cut back on how much food she eats in one sitting and this has helped her keep everything down. Speaking of food, her growth over the past 5 1/2 months has been steady and we are so thankful that we avoided any obstacles there.

Over the next few weeks we have follow-up appointments to check labs, post-chemo echo, CT and PET scans, and line removal. We are trying to push her team to get her scans in sooner as they are later than they need to be and we have to wait for the scans to get the go-ahead for line removal. We are hoping to be able to meet with Dr. Park again (the neuroblastoma specialist), as we have only seen her in clinic once through treatment. It would be great if we could see her after scans to get her perspective and have her layout what the next year should look like for Audrey. It is crazy to think that soon we won't be making our weekly trips to Children's. We have met some amazing people and Audrey has truly stolen the hearts of all those who have spent time with her. The infusion nurses always look forward to seeing her and I'm pretty sure they might fight over who gets to have her for the day. She has been a perfect patient for her dressing changes with the home care team. I know they also look forward to seeing her, especially as they send out a red faced toddler they have just struggled with.

Audrey should be feeling better in about a week. Hopefully her counts don't drop low enough to require transfusions. She has been narrowly avoiding getting red blood cells again and hopefully we can keep avoiding it and her body will be able to bounce back on its own. We will try to update again closer to rescans.

Last Cycle Today, Woohoo!

Our Little 12!

Quick visit for labs. Gotta show our 12th man pride!

Photo Update!

Here are some photos of Audrey from the last few weeks. 

She continues to have a strong & easy-going spirit despite everything.
Just a week away from what will hopefully be her last cycle of chemotherapy!

Ready for an early morning appointment!

Selfie?

HIYAH!

Since we have been seriously behind on the updates, I will try to cover what we may have missed the last several weeks. Our last post was just after Audrey's 5th cycle. This one didn't make her too sick and fortunately she felt better after about 5 days. We were really holding our breath that her levels would be strong enough to actually do a couple of things for Christmas, and thank the Lord, they were up and all the family was healthy! Audrey had a great Christmas Eve and Christmas. We were so excited that the timing of her chemo actually allowed us all to enjoy a more "normal" Christmas with family. With her 6th cycle starting the day after Christmas and mommy going back to work the day after that, we were hoping the days would go by nice and slow.

Getting excited for Christmas

Christmas Morning

Audrey's 6th cycle was a one-day but included the nasty med that makes her the sickest. They gave her an additional nausea med this time, but I can't say I really noticed any difference. It took her about 11 days until she didn't need her nausea meds to keep food down. We hate when she gets this med and we will have to deal with it once more on cycle 8. Audrey has continued to avoid any complications with treatment. We are returning today to check her platelet count to make sure she doesn't need any given. Her energy really hasn't been affected and even when she doesn't feel good she is a pretty happy girl. We are trying so hard not to get sick so that we don't pass anything on to her. This has been pretty scary as I have returned to work and it seems that many people around me are sick. I consider everyday that goes by without Audrey catching something a success!

The 7th cycle is scheduled for next week. Audrey will also get an echocardiogram to continue monitoring her heart. (Another potential side effect of using that icky med!) Her 7th cycle will be 3 days again but the first day is much shorter than normal. It is definitely getting harder to entertain her for 8 hours sitting in the hospital so a 4-5 hour day should be a little more smooth. Galen has been taking Audrey to her appointments as he is now on leave to take care of her while I am at work. They are both loving their daddy-daughter time for sure. This past Wednesday he inquired about what the end of treatment would look like. Audrey should get her 7th cycle this next week with three weeks to recover before the 8th. The 8th cycle is another one-day but again with the icky med and then they will give her another three weeks before re-scans. If the scans look good and she has bounced back, they will remove her line. Then we will begin follow-ups with rescans every 3 months. Lord willing by the end of February we will be done visiting the hospital so frequently. We are so excited for Audrey to be healthy again. Since we had to cancel our beach trip in August as it was the day after her diagnosis, we are especially looking forward to getting Audrey to the coast again. We can't wait until she can have playdates again and actually spend some time with someone her own size! We could probably go on and on about all we are looking forward to after treatment.

We will try to post again much sooner next time. Your continued thoughts and prayers for Audrey's smooth recovery are greatly appreciated! Hopefully we can return home today without needing a transfusion. Audrey is reeeeally looking forward to seeing the Hawks win today!

Shannon & Galen