Another fairly uneventful week thank goodness. We had a visit Wednesday with an echocardiogram, line dressing change, labs and clinic visit with her doctors. After our most recent cycle Audrey seemed to be nauseated for several days afterwards. We kept her on her anti nausea and fortunately by day 5 she seemed to have regained her appetite quite dramatically. We haven't seen any other visible side effects other than the nausea and possibly a stronger preference in what she eats.
She is still hanging on to a little bit of her hair and we are just going to let it go and look forward to it coming back once she's done. We have tried to get a few more hats as it is getting colder and she is nearly bald but I don't think she lets a hat stay on for longer than 20 seconds. We will just keep trying!

Her echo was probably the toughest we have had so far. We weren't big fans of the tech who performed it. She didn't have a very calm demeanor and I think Audrey picked up on that. Also, Audrey's line is placed right over her heart so it makes getting the images slightly challenging and covers her dressing in the gel. Not fun. We heard back on the same day it was performed and all of the measurements were the same as her previous echo- so it looks like the meds have not affected her heart thus far. Thank The Lord.

She gained weight again! Woo hoo! Not much of a gain but a wins a win! We are continuing to keep focused on what she is eating and trying our best to accommodate what she wants while also getting her to eat what's going to give her the most calories/fat. I am thankful that Audrey is still drinking breast milk. So many stop breast feeing earlier but I am confident that it is incredibly beneficial that she is getting it considering her health.

Our visit with her docs was quick. We just touched base on her levels and what we had been dealing with since cycle 2 was given.

Saturday we went back just for a lab draw to check on all of her levels since we won't see them again until Wednesday. Everything looks good- meaning she doesn't need any transfusions- but she is neutropenic. This means her ability to fight off infection is extremely compromised and at the same time she is more likely to run a fever. So we are keeping a close eye on her temp while her body bounces back up.

I do have to say that we had a less than ideal interaction with our nurse Saturday. She started off asking us why we were in for labs- what we were looking for. Apparently she was helping the person who was supposed to be our nurse (whom we never actually saw). So the whole time she seemed a little inconvenienced and annoyed. At one point my mom asked about why Audrey got a double-line instead of a single. I explained that double lines help if two meds need to be administered simultaneously and also two allows one to be used for draws and the other to give meds. The nurse then says "well we give these lines to babies who are going to be really sick and who will be inpatient a lot." Gee, how sweet. We also mentioned her birthday coming next week to which she asked if we had "big plans." Hmmm, her immune system is incredibly compromised- what do you think? She then told us "well hopefully you aren't inpatient for it." Uh, yeah. Thanks. Our nurses are typically amazing but I have to say, I think she could use a lesson in bedside manner.

So next week we go in again for labs and clinic. Hopefully Audrey's system is recovering as we speak and she can enjoy her birthday week with just the one visit to Children's. I am back to work for a few days before I can start my new leave (very complicated but I have I wait until Audrey's bday so that we have hit when I started leave last year). So she has had some much-needed daddy time instead.

We will continue to update after next week. We know we haven't hit the worst of this process but are taking it day by day and we are so grateful it has been so smooth thus far. Thanks for following our journey.

Well we didn't end up needing a platelet transfusion last week. We also didn't have to visit the ER due to any fevers so it has been a fairly calm week. We did start to notice that Audrey was shedding more hair than usual and that has only gotten worse the last several days. She thinks she is funny when she reaches up and pulls out a little chunk (usually while eating so it's a nice avocado covered handful of hair). It is really the first physical sign of the chemo meds and makes it all the more apparent what they are doing to her body. Fortunately at this age plenty of babies have no hair and she is sure cute enough to pull off bald! We are just hoping her trademark lashes don't go too!

Wednesday we had labs and a visit with the doctors. Her counts were back up which means she was ready for Cycle 2. She also gained weight (.2 oz but we will take it!) Her appetite hasn't changed much so far and we have a nausea medication that we can use for her as needed. We were able to get a few questions answered with the docs as we have had a little more time to settle in and think about everything. We have yet to meet the Doctor who is really the expert on neuroblastoma- but are confident she is contributing to Audrey's care plan and we hope to meet her soon!

Thursday we went in bright and early for our Chemo Cycle 2. This included 1 repeat med and 2 new ones. Like I mentioned before these new ones are a little scarier and there were additional meds she got throughout the day based on side effects of these. We had to be in the infusion center until 5:15 or so which made for a long day. Fortunately she was still able to get a couple of naps in and we brought plenty of toys for distraction. We hope all of our cycles go this smooth and pray we can continue to be outpatient for the remainder of her treatment.

Next week we go in to visit her docs again (check labs and growth as well) and we will be doing another echo on her heart. One of the new meds has been known to damage the heart muscle and due to Audrey's prior heart condition, this could be more likely for her. Pray her heart is safe and protected against this.

Cycle 3 is already scheduled for the 10th as long as her system has rebounded by then. This will be a three day cycle again like Cycle 1.

Fortunately our happy girl's attitude hasn't changed. She has been playful as ever and has started taking her first couple of steps unassisted. Her first birthday is less than 2 weeks away and though we wish the circumstances were different, we are so excited to celebrate our strong girl.

As always, thank you so much for your prayers and kind words. Thank you for your continued support as we keep moving along this unfamiliar road.

We can't believe it has already been two and a half weeks since Audrey's initial diagnosis. This week we visited the doctors as well as met with a nutritionist again. Audrey gained weight (woo hoo!) so they were pleased and we continued to talk about good foods for her. We have been really researching the best foods to help Audrey fight this and keep her immune system up. Now we just have to convince her to eat it!

The doctors reviewed the PET scan results with us and fortunately there weren't any new areas of concern. Thank you Lord. They again stated that the current plan will be eight cycles of chemotherapy. Four before surgery and four after. This will likely put us into mid-January. Audrey has been such a joy the last couple weeks. The fact that I have been able to be with her around the clock is something I will always be thankful for. I can't imagine having to schedule her care and appointments around a work schedule as so many people are forced to do. We are incredibly hopeful and optimistic about Audrey's treatment, but are also nervous to get through the next couple of months. This week due to Audrey's levels, we have to be on "fever watch" to make sure that she doesn't have any kind of infection. This means not a lot of visitors and no busy public places. We have been hanging out at home a lot anyways so we don't mind!

Today we went in to get labs again as Audrey's platelets are low. We aren't quite so low that we need a platelet transfusion but we go back Sunday to check again.

Next week Audrey will get her second cycle of chemotherapy medications. From what we understand these are more potent and have scarier side effects than those of the first cycle. Please pray that these medications attack the cancer cells and don't cause these awful side effects in Audrey.

Thank you for continuing to think of our family and for your support.

Well we have been home since Monday afternoon but Tuesday is the only day we actually had at home all day. Wednesday we took Audrey in for a hearing test as well as a clinic visit and labs. The hearing test was first for the day and Audrey did so well. There are a few different tests they do and they were actually able to get even more information then they expected- which is great for future comparisons. It sounds like we will repeat these tests fairly often so that if there are any changes to Audrey's hearing, they can adjust her medications accordingly. Her results were very good and we pray that none of the treatment affects that.

Next we went to clinic for labs and to meet with the oncologist. They keep a very close eye on her blood counts so that we know when she is in need of transfusion and also when we have to be even more careful of coming in contact with viruses/bacteria. They expect that her counts will be lowest about a week after chemo medications- so this weekend will be very telling for us of what we may expect in coming months. From what they drew she looks very anemic so we will be going back today (Friday) to check again and likely get a transfusion.

We met with a nutritionist again at our visit to review Audrey's diet and basically were told our threshold number for Audrey's weight. If she dips below this number we will likely have to have an NG tube (feeding tube) to keep her nourished with enough calories to support her though treatment. We are trying our best to avoid this but it is challenging when she cannot tell us if she feels nauseated and can't tell us what she feels like eating. Her diet has already been a big priority for us so it is great to have support and more guidance from her team. She has gotten sick a couple of times already but it is hard at this age to say whether it's from the meds or just ate too much/didn't agree with her.

From our time with the oncologist we found out that her cancer does have one unfavorable characteristic that means we may in fact be in for more than the 4 courses of chemotherapy. It is hard for them to say now as they don't know how she will respond to the treatment but they want to prepare us for this as a possibility. Our plan for now is for me to take leave as long as I can and once mine runs out, Galen will take his.

Yesterday we went back in to have her PET scan done. As I mentioned before, this scan is to serve as a starting point for future comparisons. Also, it should show if there is evidence of any other areas of concern that haven't previously been seen. We may not hear back on this scan until Tuesday when we see her doctors again. Unfortunately so many of their tests require Audrey to go under anesthesia because they require little to no movement. We absolutely hate that this is the case, but there aren't really any other options. So yesterday she was under for about half an hour while they ran the scan and then they brought her back to us while she was waking up. We have to keep her from eating hours before the tests and this is certainly not making it easier to keep her weight up.

Thank you again for supporting us and for following Audrey's progress. Please pray that Audrey stays strong over the weekend and that she keeps her appetite so we can keep feeding her as before. We will update again next week.

Our baby girl is 11 months today!

Yesterday after our third night of chemotherapy medications we were able to bring our punkin home! Now we basically wait at home while Audrey's immune system responds to the meds and recovers before we start the next round. So far we haven't seen much of a change in her attitude which is all we can hope for. She is so happy to be home- crawling and cruising around the house- and so happy to be in her own bed. Unfortunately Audrey's favorite activity-- bath time-- is a bit more challenging with her central line but we are making the most of it. We have to be incredibly careful going forward that Audrey isn't introduced to any new viruses as she won't have the ability to fight them off. We also have to keep her and her line extremely clean so that she doesn't develop any sort of infection. This is perhaps the scariest part of her treatment. Fortunately we don't live far from Children's for our many return visits. She will see her doctors again tomorrow to take labs and check in on how she is responding and will also have a hearing test to determine a baseline as some of the medications can affect her hearing. Thursday we will go in for hopefully our last scan for a little while. This scan will give them a good picture of her affected areas and will also be a comparison for future scans so they can monitor how the cancer is changing.

Once again we are encouraged by the fact that she is receiving treatment at such an amazing hospital. The doctors and nurses, as well as additional support staff, are absolutely incredible. They were all in love with Audrey and I know her doctors were excited, but sad to see her go. She definitely made an impact on all of those she met. One of her cardiologists came by while we were staying there just to say "hi." She was there the night Audrey was admitted to the Cardiac ICU back in October of last year and we have seen her for many of our follow up visits the past several months. She was definitely crushed to see Audrey going through this as I know she has been so encouraged to see her fight against her heart condition.

As if we didn't already appreciate Seattle Children's from our prior experience-- they have so much in place to support families and to just make the nightmare a little more liveable. We have been blown away before and this time certainly hasn't been any different.

We will continue to update after our visits this week and just ask that you pray or think of Audrey as we continue on this unfamiliar road to getting her free of cancer.