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

Audrey is done with cycle 5! Each day is one step closer to being done with chemotherapy. Cycle 5 was 3 days long and with our visit Wednesday to check labs and visit the doc, we were at Children's almost everyday last week. Thursday was the long day where we sat in the infusion area while Audrey received the 2 chemo drugs. She really did such a good job considering it was so long. We checked in at 8:30 and didn't leave until 4:30. The infusion rooms leave a LOT to be desired. They aren't private, quiet, or spacious. The nurses do their best with what they have, and fortunately we were lucky enough to have Kristen again, who is a fantastic nurse. The two meds Audrey got don't make her nearly as sick as the med she got last cycle. She still gets her nausea med twice a day but she has been eating pretty well and has only been a little bit cranky. I have included a picture of Audrey riding on the "lily pad" as we were trying to entertain her the last two hours of our day Thursday. One of the nutritionists stopped by to check in towards the end of our day. Audrey's growth has been strong and steady, thank God. She provided us with a couple more tools to keep Audrey's weight gain up. It is definitely a challenge when you consider how few days she actually feels good. Then add the typical toddler behavior towards food and their tendency to get distracted. We have our work cut out for us for sure.

Friday and Saturday were quick days as she only received one med and it is given over an hour. Sunday we returned to get the injection again which helps her bounce back quicker. It definitely worked last time as Audrey's levels were ready for us to start the cycle on time instead of having to delay again. This week we have clinic Wednesday and then Thursday we will be touching base with her cardiologist and repeating her echo. Her 6th cycle is scheduled for the day after Christmas. Though the timing isn't ideal, the sooner we get them done the sooner we can be done and get her darn line out! I will be going back to work after her 6th cycle and Galen will be starting his leave. The fact that we have been able to be with her through this and haven't had to worry about $$ is huge. We have been able to focus the majority of our attention on Audrey and getting her healthy again. Truly, we can never tell you how much this has meant to us. So many families are faced with longer treatments and are forced to return to work while their child is still incredibly sick. We do not take for granted the gifts we have been given.

 Hopefully we won't have much for news after this weeks appointment. Pray for a beautiful echo for Audrey. 

Love,
Shannon & Galen

Drinking the contrast

Running around before clinic

Well, I didn't post last week as it was fairly uneventful. We saw her doctors at clinic Wednesday and all of her levels were fine. Poor thing was so sick after the 4th cycle. One of the 4 chemo meds she is getting makes her especially nauseated (though they all do somewhat). Typically she only needs her anti-nausea med for 5 or so days after chemo but this time we continued it through day 11 so that she could keep food down. Finally the last couple of days she has felt better so we have been able to skip the med and get a little more in her tummy.

This week we anticipated being pretty exhausted as we had visits Monday, Tuesday and today. Monday we went in to check her hearing as well as to have an EKG and echocardiogram to monitor her heart. Her hearing tests were fine. She is such a trooper for how young she is. From what I can gather it is somewhat common for children who receive Carboplatin (one of the chemo meds) to end up with some hearing loss. Just another side effect that we must pray doesn't occur in Audrey. We went straight from the audiology department to cardiology and fortunately they were able to squeeze our appointments in closer together. This made for a much smoother day than we expected! Half of the difficulty with appointments is trying to entertain Audrey while we wait and keeping her from putting her hands all over every germy surface! We ended up sneaking in a dressing change as well after her echo which was quick and easy as well. All in all we were feeling pretty good leaving Monday afternoon.

Tuesday I guess we had to pay for the good luck we had Monday. We were told to check in at 9am for a long day in radiology even though our appointment wasn't until 10:15. We of course arrived on time but didn't get called back until 10:15! We were a little frustrated, to say the least, since Audrey had to keep from eating for the tests/anesthesia. When we did finally get back to start our appointment we had to get Audrey to drink the oral contrast for the CT scan. They say it doesn't taste like anything but they could only mix it with water. My fear was that we wouldn't get Audrey to drink enough of it and they would have to use an NG tube to get the rest in her. Fortunately we were able to play enough games and switch cups a couple of times to keep things interesting! Galen and I were feeling pretty happy to accomplish this feat and were quickly frustrated again as a comment was made about how long it took to get the contrast in her. HELLO! We would have had it in her an hour earlier if we had been called back sooner! Anyway, we then had to wait around for 40 minutes before the injected contrast was given for the PET scan. Then once she had this injected we had to wait another 50 minutes before she started anesthesia for the tests. She did great but poor baby was much crankier coming out of anesthesia than she has been before. It took her a little while to get in a better mood and then we were out the door. Literally 2 minutes after leaving the hospital one of the oncology docs called us (well we made sure to page him before we left the hospital to remind him to call us as soon as he saw the results!) He briefly explained that the mass in her neck was no longer visible and the tumor in her abdomen shrunk from 21cm to 13cm! Hallelujah!

Today we went in for a regular clinic visit and to check labs. Everything looked good except her platelets are running a little low. We will be back Saturday to make sure she doesn't dip so low that she needs to be given a transfusion. We were eager to see her docs today so that we could get better details on what the scans showed. Lets just say our visit was a bit underwhelming. We were meeting with the nurse practitioner on our team and she couldn't explain to us the difference between what the PET scan shows and what the CT scan shows. She also pulled up the echo results and pointed out that Audrey's left ventricular function measured in the low normal. She suggested we try to speak to one of the docs (fellow) so that he could better explain. So the doc comes in and I can't say he did a great job explaining it either but basically, the PET scan did not show any concerning areas. Her initial scan at diagnosis lit up her abdominal tumor and the lymph node area under her collar bone. Now it is showing nothing! The CT scan shows the tumor has reduced in size and doesn't show anything concerning in her lymph nodes. The reason the tumor doesn't light up on the PET scan is because it isn't active. This is GREAT NEWS! This is such a relief to know that the awful meds they have been giving our baby girl are working and, Lord willing, they will get rid of her cancer for good! The doc then explained that Audrey's echo results are all still in normal range but showed a slight variation from her last echo. He assured us it isn't something that is concerning at this point. We made sure they still put in a call to her cardiologist to make sure we could hear it from her as well. She will be seeing them next month to repeat the echo and have a visit.

We can't believe we are already due for the 5th cycle next week. It will be three days long but shouldn't make her quite as sick as this previous cycle. It is just nice knowing that each cycle is one step closer to being done with chemo. Based on the timing of her chemo we should have a healthy and happy Christmas before she starts the 6th cycle.

Thank you for thoughts and prayers for our family and Happy Thanksgiving! Can you guess what we are thankful for this year?

Shannon & Galen