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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