Waiting to start our scans
Fun with little sis
Our trip to Disneyland
March 16, 2016
We have been meaning to post an update for some time now but life has been busy! We are just over two years out of Audrey's treatment (Feb 6) so we returned to Seattle Children's today to get another follow-up CT scan. It was another super early morning of fasting, contrast drinking, and cartoon watching. Since Audrey is still too young to be able to sit still for the scan she did have to undergo anesthesia again. It doesn't matter how many times we have been through this with her, it does not get any easier. It is scary when your kiddo (especially little kiddos) have to go under. We get to be there holding her while she falls asleep and right there waiting for her when they wheel her back in. Fortunately she woke up super smoothly this time and had some crackers and juice before we headed off. Our clinic appointment with oncology was very shortly after the scans were completed which is much better than having to wait an hour or two in between. It can make for a really long day! We met with a new doctor today. He works specifically with Neuroblastoma but just joined Seattle Children's 6 months ago. Apparently he was impressed with Dr. Park's work (aren't we all?) and moved out here to work alongside her. He reviewed the scans and was able to give us his conclusion that the scans looked the same as the ones prior which is GREAT news. This afternoon he called to give us the official report of the same finding. He said what is left behind is so small it really isn't measurable but can be identified when comparing left vs right. It is always a sobering experience to visit the oncology clinic. There are so many children, all different ages, in various stages of treatment. It already feels so long ago that Audrey was in the middle of chemo but we try not to forget all that our tough little bug has been through. There are many families who don't have the outcome that we have had and we know we are incredibly blessed. It is just another reminder to maintain perspective and to be kind to others as you don't always know what they might be going through.
As far as Audrey's heart is concerned, we will see her cardiologists in a little less than 2 months. The last appointment was good but she is still on a heart medication. Her main doctor has seen some kids who are weaned off too soon have decreased heart function. As much as we don't like her being on this medication, we would rather be on the cautious side when it comes to discontinuing it.
Since we last posted Audrey got a baby sister. Eleanor is almost a year old now and thinks Audrey is just the COOLEST! Ellie is actually the age that Audrey was when she was diagnosed and that totally blows our minds. Having two kids in the house is definitely a different ball game and my heart goes out to those parents who have a sick kiddo with other kids in the house too.
We get to go a year without visiting oncology again and when we do it will be Audrey's last scan! Wahoo! Thanks for reading and for caring about our sweet Audrey.
As far as Audrey's heart is concerned, we will see her cardiologists in a little less than 2 months. The last appointment was good but she is still on a heart medication. Her main doctor has seen some kids who are weaned off too soon have decreased heart function. As much as we don't like her being on this medication, we would rather be on the cautious side when it comes to discontinuing it.
Since we last posted Audrey got a baby sister. Eleanor is almost a year old now and thinks Audrey is just the COOLEST! Ellie is actually the age that Audrey was when she was diagnosed and that totally blows our minds. Having two kids in the house is definitely a different ball game and my heart goes out to those parents who have a sick kiddo with other kids in the house too.
We get to go a year without visiting oncology again and when we do it will be Audrey's last scan! Wahoo! Thanks for reading and for caring about our sweet Audrey.
October 10, 2014
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.
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
March 04, 2014
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
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
February 09, 2014
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.
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.
February 06, 2014
February 01, 2014
January 30, 2014
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!
Just a week away from what will hopefully be her last cycle of chemotherapy!
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| Ready for an early morning appointment! |
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| Selfie? |
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| HIYAH! |
January 11, 2014
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.
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
Getting excited for Christmas
Christmas Morning
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
December 09, 2013
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 $$ is huge. We have been able to focus the majority of our attention on Audrey and getting her healthy again. Truly, we can never tell you how much this has meant to us. So many families are faced with longer treatments and are forced to return to work while their child is still incredibly sick. We do not take for granted the gifts we have been given.
Hopefully we won't have much for news after this weeks appointment. Pray for a beautiful echo for Audrey.
Love,
Shannon & Galen
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Friday and Saturday were quick days as she only received one med and it is given over an hour. Sunday we returned to get the injection again which helps her bounce back quicker. It definitely worked last time as Audrey's levels were ready for us to start the cycle on time instead of having to delay again. This week we have clinic Wednesday and then Thursday we will be touching base with her cardiologist and repeating her echo. Her 6th cycle is scheduled for the day after Christmas. Though the timing isn't ideal, the sooner we get them done the sooner we can be done and get her darn line out! I will be going back to work after her 6th cycle and Galen will be starting his leave. The fact that we have been able to be with her through this and haven't had to worry about $$ 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
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November 27, 2013
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
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
November 20, 2013
November 15, 2013
November 14, 2013
I apologize for taking so long to write a good update on Audrey's progress. We just left the hospital today for what was a short second day to her 4th cycle of chemotherapy. Last week we had clinic and were planning to start the 4th cycle last Thursday, but Audrey's levels had once again barely missed the cutoff so we were pushed out until this week. Last week we did find out that Audrey will be receiving 8 total cycles instead of only 4. While I wanted to post this last week, we were meeting with Dr Park, the neuorblastoma specialist, Monday and I figured she would give us more useful information.
While we have been busy focusing on what her scans will show, we forgot that we were still waiting for a test to come back on the cancer's genetic makeup. This finally came back and showed that Audrey's cancer has "deletion of p1"- which in layman's terms means it has a slightly higher chance of recurrence. Dr Park assures us it is still only 10-15% chance of recurrence. Audrey still falls in the intermediate risk category and still has many things in her favor; Namely her young age, overall health and demeanor, and the fact that it did not spread to her bone marrow or blood. She said Audrey's prognosis is still "excellent." Surgery still depends upon the size of her tumor once we repeat the scans at the end of the month. We will have a long few days the 25-27th but will fortunately be home for Thanksgiving. (Having to push out cycle 4 turned out to be a blessing after all!)
Because Audrey doesn't bounce back as quickly as they would like, she now has to get an injection after each chemo cycle to help her bone marrow recover and get her counts back up sooner. It means another trip to the hospital but it is nice that she will spend less time in the high-risk-of-infection-zone.
This 4th cycle is OK so far. Yesterday was our longer day of about 4 1/2 hours. Poor thing got sick last night as I believe we should have given her nausea med sooner but she has been good otherwise. Today was quick and we had the same nurse as yesterday, who we really like. Tomorrow will be quick too as well as Saturday.
Last week we ran into the little girl we mentioned before is also undergoing treatment for Neuroblastoma and it sounds like they will be done at 4 cycles. We are very happy for their family and can't wait to be at the end of Audrey's treatment. We are still very much hopeful for a miracle when they repeat scans on Audrey in two weeks. We know we are lucky to have avoided any inpatient time during her treatment so far (apart from her initial inpatient stay) and we hope to keep it this way. Since the meds have a cumulative effect and we are well into cold/flu season, we will continue to be hermits over the next couple months to keep our girl as safe as possible.
Thanks for continuing to pray and think of us! We will update again soon!
Love
Shannon and Galen
October 30, 2013
October 26, 2013
Can't believe it is almost two months since Audrey's diagnosis. Time has
went by so quickly. This week we had several appointments and we were
able to get more information on what the next couple of months will look
like.
Monday we saw Audrey's pediatrician. She was very impressed with Audrey's growth over the past month or so-- our baby is almost 20 pounds! Must be all the butter and cheese we add to everything ;) We discussed Audrey's development and side effects thus far. It was a pretty quick appointment.
Tuesday I got a call from the surgical coordinator to schedule a visit with the surgeon who completed Audrey's first surgery and who is to complete any subsequent surgeries. I told the coordinator that I didn't think the dates were right as they had her surgery scheduled for 10 days after her 4th cycle. Since he couldn't really speak to it (just going off of what he is told) I just let him schedule our consults and thought maybe we really would be preparing for a Nov 15th surgery.
Wednesday were labs and clinic as well as the visit with the surgeon. Audrey's levels had already dipped pretty low whereas before it was taking more like two weeks post-chemo for her levels to drop. Nothing too alarming and no need for transfusions but she is on fever watch again. In her clinic visit I mentioned the surgery date and it seems the communication between oncology and the surgical center was a bit off. Weeks ago the November date was put up as a tentative surgery date and this hadn't been changed. The docs promised immediate follow up with surgery but we still went to meet with the surgeon anyway. Dr Ledbetter (the surgeon) is pretty great. He explained that Audrey's treatment is still somewhat up in the air until we get some sort of progress on what the chemo has done to her tumor. He said at this point we still can't say what Audrey's surgery will look like, if she will need more than one, or if she will need it at all. He walked us through her CT images from when she was first diagnosed (not sure why this wasn't done before) and showed us the affected areas. He also explained what surgery would look like if he had to operate on the tumor as it presented on her initial scans. (Absolutely terrifying!) Because Audrey's tumor is located in a very tricky spot, surgery would be extremely invasive and would leave her with an enormous scar. If this is what we must do, we at least know she would be in very good hands.
Thursday we had another echocardiogram and a visit with Audrey's cardiologist. Her heart still looks beautiful and there will be no changes to her heart meds as of right now. If it weren't for Audrey's cancer we would have been the point where we would only have to see the cardiologist every 6 months but not with everything going on now. We will continue to see them often for the next several months. The one chemo med that they are most worried could damage her heart will be given again for cycle 4, so we will be repeating the echo in a few weeks.
This morning we returned to check Audrey's labs to make sure she didn't need any transfusions. While there we were able to talk to one of her doctors about the next steps. She explained that after the surgery scheduling confusion they discussed with Dr Park (Neuroblastoma specialist) and it should go as follows: After cycle 4 they will repeat Audrey's scans. If her tumor has been reduced by 50% or more she should not need surgery or the additional 4 cycles. If it has not been reduced by 50% they will proceed with the additional cycles of chemo. Then they would repeat scans after cycle 8 and determine then if she needs surgery. This is much better than we had even hoped. It will be an absolute miracle if Audrey can get by with just the four cycles, but at the least we want to avoid surgery. We should know over the next couple of weeks when her scans will be- please pray that the tumor is gone when they scan again.
We will continue to update over the next couple of weeks. So far next week is looking like it will be a quiet one but we will be going in Wednesday for clinic. I also requested that we finally meet Dr Park so that should happen the week after cycle 4.
Thanks for continuing to follow Audrey's fight!
Monday we saw Audrey's pediatrician. She was very impressed with Audrey's growth over the past month or so-- our baby is almost 20 pounds! Must be all the butter and cheese we add to everything ;) We discussed Audrey's development and side effects thus far. It was a pretty quick appointment.
Tuesday I got a call from the surgical coordinator to schedule a visit with the surgeon who completed Audrey's first surgery and who is to complete any subsequent surgeries. I told the coordinator that I didn't think the dates were right as they had her surgery scheduled for 10 days after her 4th cycle. Since he couldn't really speak to it (just going off of what he is told) I just let him schedule our consults and thought maybe we really would be preparing for a Nov 15th surgery.
Wednesday were labs and clinic as well as the visit with the surgeon. Audrey's levels had already dipped pretty low whereas before it was taking more like two weeks post-chemo for her levels to drop. Nothing too alarming and no need for transfusions but she is on fever watch again. In her clinic visit I mentioned the surgery date and it seems the communication between oncology and the surgical center was a bit off. Weeks ago the November date was put up as a tentative surgery date and this hadn't been changed. The docs promised immediate follow up with surgery but we still went to meet with the surgeon anyway. Dr Ledbetter (the surgeon) is pretty great. He explained that Audrey's treatment is still somewhat up in the air until we get some sort of progress on what the chemo has done to her tumor. He said at this point we still can't say what Audrey's surgery will look like, if she will need more than one, or if she will need it at all. He walked us through her CT images from when she was first diagnosed (not sure why this wasn't done before) and showed us the affected areas. He also explained what surgery would look like if he had to operate on the tumor as it presented on her initial scans. (Absolutely terrifying!) Because Audrey's tumor is located in a very tricky spot, surgery would be extremely invasive and would leave her with an enormous scar. If this is what we must do, we at least know she would be in very good hands.
Thursday we had another echocardiogram and a visit with Audrey's cardiologist. Her heart still looks beautiful and there will be no changes to her heart meds as of right now. If it weren't for Audrey's cancer we would have been the point where we would only have to see the cardiologist every 6 months but not with everything going on now. We will continue to see them often for the next several months. The one chemo med that they are most worried could damage her heart will be given again for cycle 4, so we will be repeating the echo in a few weeks.
This morning we returned to check Audrey's labs to make sure she didn't need any transfusions. While there we were able to talk to one of her doctors about the next steps. She explained that after the surgery scheduling confusion they discussed with Dr Park (Neuroblastoma specialist) and it should go as follows: After cycle 4 they will repeat Audrey's scans. If her tumor has been reduced by 50% or more she should not need surgery or the additional 4 cycles. If it has not been reduced by 50% they will proceed with the additional cycles of chemo. Then they would repeat scans after cycle 8 and determine then if she needs surgery. This is much better than we had even hoped. It will be an absolute miracle if Audrey can get by with just the four cycles, but at the least we want to avoid surgery. We should know over the next couple of weeks when her scans will be- please pray that the tumor is gone when they scan again.
We will continue to update over the next couple of weeks. So far next week is looking like it will be a quiet one but we will be going in Wednesday for clinic. I also requested that we finally meet Dr Park so that should happen the week after cycle 4.
Thanks for continuing to follow Audrey's fight!
October 18, 2013
Well we are now three cycles down in Audrey's treatment. Though we don't
want to push out her treatment it was awfully nice to have a weekend
off where we pretty much knew her levels were back up and we could get
out of the house for a bit.
Friday we took her to the zoo- which if anyone remembers it was totally rainy but that was perfect for us! We bundled up and luckily not many people thought the zoo was a good idea. It was nice and quiet and many of the animals were up close to the glass since they didn't want to be in the rain. It stopped raining not long after we got there and Audrey had such a good time. Sunday we took Audrey to the pumpkin patch for the first time. It was perfect weather and a nice big farm area so we didn't have to worry about being in close contact with everyone. It was such a good "normal" weekend where we could forget about her condition for a little while and just enjoy what we have.
Monday was a short visit. They confirmed her levels were high enough to start the third cycle and we were scheduled to come in bright and early Tuesday morning.
Though our longest day, Tuesday was pretty smooth. We had the best nurse ever- she was sweet as can be and loved playing with Audrey. She also suggested we meet another family whose beautiful little girl is also undergoing Chemotherapy for Neuroblastoma. It was really nice to be able to relate to someone else for a minute but our heart aches for them. Their situation is slightly different but also very similar. Audrey and their baby girl were diagnosed within a day of each other and were inpatient at the same time. They were both in to start their third cycle Tuesday and we were able to chat for a little while before poor Audrey got irritable and then sick :( It was at the very end of the long day and she probably needed her nausea med sooner. She was pretty sleepy the rest of the day.
Wednesday and Thursday were short days. It only took about two hours from checking in to leaving. Crazy how fast two hours goes by when you have just been in for over 8 the day prior. So now we are back at the waiting for her levels to dip phase. She will go in next Wednesday to check in and Thursday she will see her cardiologists. We also see her pediatrician next week for the first time since she sent us to the ER in August. We hope and pray that we can have another smooth couple of weeks and we can take on cycle 4 without any complications.
Today Galen sent me a picture of an adorable gift basket for Audrey that was dropped off at his store, in addition to $$ from fundraising that was setup through work. We are basically speechless at this point. We seriously work with the GREATEST people. I don't know how we will ever truly show our gratitude for the generosity that we have seen throughout the last couple of months but we will certainly try!
We will update next week but hopefully it will be a boring one ;)
Friday we took her to the zoo- which if anyone remembers it was totally rainy but that was perfect for us! We bundled up and luckily not many people thought the zoo was a good idea. It was nice and quiet and many of the animals were up close to the glass since they didn't want to be in the rain. It stopped raining not long after we got there and Audrey had such a good time. Sunday we took Audrey to the pumpkin patch for the first time. It was perfect weather and a nice big farm area so we didn't have to worry about being in close contact with everyone. It was such a good "normal" weekend where we could forget about her condition for a little while and just enjoy what we have.
Monday was a short visit. They confirmed her levels were high enough to start the third cycle and we were scheduled to come in bright and early Tuesday morning.
Though our longest day, Tuesday was pretty smooth. We had the best nurse ever- she was sweet as can be and loved playing with Audrey. She also suggested we meet another family whose beautiful little girl is also undergoing Chemotherapy for Neuroblastoma. It was really nice to be able to relate to someone else for a minute but our heart aches for them. Their situation is slightly different but also very similar. Audrey and their baby girl were diagnosed within a day of each other and were inpatient at the same time. They were both in to start their third cycle Tuesday and we were able to chat for a little while before poor Audrey got irritable and then sick :( It was at the very end of the long day and she probably needed her nausea med sooner. She was pretty sleepy the rest of the day.
Wednesday and Thursday were short days. It only took about two hours from checking in to leaving. Crazy how fast two hours goes by when you have just been in for over 8 the day prior. So now we are back at the waiting for her levels to dip phase. She will go in next Wednesday to check in and Thursday she will see her cardiologists. We also see her pediatrician next week for the first time since she sent us to the ER in August. We hope and pray that we can have another smooth couple of weeks and we can take on cycle 4 without any complications.
Today Galen sent me a picture of an adorable gift basket for Audrey that was dropped off at his store, in addition to $$ from fundraising that was setup through work. We are basically speechless at this point. We seriously work with the GREATEST people. I don't know how we will ever truly show our gratitude for the generosity that we have seen throughout the last couple of months but we will certainly try!
We will update next week but hopefully it will be a boring one ;)
October 10, 2013
Well we were supposed to be starting Audrey's third cycle of chemotherapy today but her system hasn't fully rebounded from cycle two. We visited her doctors last Wednesday and her platelet count was getting low. This meant we had to return Friday and Sunday to check again and make sure she didn't need a platelet transfusion. Low platelets mean Audrey is at risk for bleeding and bruises really easily. Poor thing bruised her head just from bumping it with her empty bottle. We went back in yesterday to see her doctors again and everything had bounced back expect for her ANC- which means no chemo yet. Fortunately we have been able to avoid transfusions since our first one for her anemia and we haven't had to be admitted for any fevers thus far. The more time we can be at home throughout this process, the better. We will be going back Monday to double check her ANC and hopefully start cycle 3 on Tuesday.
Audrey has been cruising along without much for immediate side effects (nausea and hair loss thus far) but it's really the long term effects that scare us the most. She has continued to gain weight- finally up over 19 pounds! We continue to get praise over what a good and patient baby she is at each visit. I guess they expect her to be putting up more of a fight or screaming at being messed with- but she saves that for home ;)
We were able to celebrate Audrey's first birthday over the weekend. We only had a couple of family members over due to her neutropenia but she had a lot of fun. Audrey got many new toys, a couple of which she stands to play with and we have noticed her walking has improved just over the last several days. We continue to be amazed at Audrey's strength.
We are looking forward to getting through the next couple of cycles so that we can get new scans and hopefully a miraculous report. We will be visiting Audrey's cardiologists week after next as we were scheduled to check in with them before all the recent developments. We pray her heart continues to stay strong against the harsh medications of treatment. Once we get through early next week we will update again. Please think of Audrey as she goes through her third cycle.
We really can't express our gratitude for all of the support for our family. We are so looking forward to the day that Audrey is cancer free and we can help others in similar situations.
Audrey has been cruising along without much for immediate side effects (nausea and hair loss thus far) but it's really the long term effects that scare us the most. She has continued to gain weight- finally up over 19 pounds! We continue to get praise over what a good and patient baby she is at each visit. I guess they expect her to be putting up more of a fight or screaming at being messed with- but she saves that for home ;)
We were able to celebrate Audrey's first birthday over the weekend. We only had a couple of family members over due to her neutropenia but she had a lot of fun. Audrey got many new toys, a couple of which she stands to play with and we have noticed her walking has improved just over the last several days. We continue to be amazed at Audrey's strength.
We are looking forward to getting through the next couple of cycles so that we can get new scans and hopefully a miraculous report. We will be visiting Audrey's cardiologists week after next as we were scheduled to check in with them before all the recent developments. We pray her heart continues to stay strong against the harsh medications of treatment. Once we get through early next week we will update again. Please think of Audrey as she goes through her third cycle.
We really can't express our gratitude for all of the support for our family. We are so looking forward to the day that Audrey is cancer free and we can help others in similar situations.
September 29, 2013
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.
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.
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