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| Drinking the contrast |
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| Running around before clinic |
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
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