Prairie from Nebraska - Dx 2015
Re: 9year old, new diagnosis, pelvic primary w lung mets
Happy to hear she's doing well.
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MartinBube
- Member
- Posts: 185
- Joined: Fri Jan 30, 2015 11:42 am
- Location: Skopje, Macedonia
Re: 9year old, new diagnosis, pelvic primary w lung mets
Very happy to read this!! The battle continues. we are all with Prairie
Re: 9year old, new diagnosis, pelvic primary w lung mets
Mj and families
Great news
Hugs and prayers to all : )
Love
Debbie and family
Great news
Hugs and prayers to all : )
Love
Debbie and family
Debbie
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hi there friends -
Prairie is still on the Cediranib 15mg once a day - but her side effects seem to be increasing. She has been on it for 3.5 "cycles" (3.5 x 28 days) - about 14 weeks. She experiences painful diarrehea episodes for a few hours each and fatigue - started out with 7 episodes the first month, then 13 then next two months and now we are at 11 in the first 15 days.
The NIH study doctors are considering reducing her dose to 15mg every other day, in order to keep her able to enjoy life and continue with things she likes to do. It sounds like the reduced dose remains effective for at least a couple kids on the trial, and I think we will end up reducing it in the long run - but it seems like there is some evidence in this forum that the longer she can stay on the higher dose, possibly the better outcome?
I have also made some changes just this week to mitigate the side effects:
The pill dose was changed to 10-11pm at the begining of the last cycle, I am changing it back to the original 3-5pm we started with
Started acupuncture to balance her energy channels
One hour actual nap during each day
Esseneial oils to the abdomen everyday
New probiotic everyday - I'm finding one with more strains
Thanks for any feedback -
MJ
Prairie is still on the Cediranib 15mg once a day - but her side effects seem to be increasing. She has been on it for 3.5 "cycles" (3.5 x 28 days) - about 14 weeks. She experiences painful diarrehea episodes for a few hours each and fatigue - started out with 7 episodes the first month, then 13 then next two months and now we are at 11 in the first 15 days.
The NIH study doctors are considering reducing her dose to 15mg every other day, in order to keep her able to enjoy life and continue with things she likes to do. It sounds like the reduced dose remains effective for at least a couple kids on the trial, and I think we will end up reducing it in the long run - but it seems like there is some evidence in this forum that the longer she can stay on the higher dose, possibly the better outcome?
I have also made some changes just this week to mitigate the side effects:
The pill dose was changed to 10-11pm at the begining of the last cycle, I am changing it back to the original 3-5pm we started with
Started acupuncture to balance her energy channels
One hour actual nap during each day
Esseneial oils to the abdomen everyday
New probiotic everyday - I'm finding one with more strains
Thanks for any feedback -
MJ
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hi MJ and Prairie and family
I'm sure sorry to hear of the bouts with ,can't candy coat, diarrhea .
The probotics can help ,as my limited understanding allows ,at this moment but have the doctors talked about possible dehydration?
How's Prairies appetite?
If it is going well there could be foods to avoid and or add too.
I have IBS so as and adult I've learened to manage that aspect , ie diarrehea. by avoiding certain drinks and foods
Bonni sure could be a great helper with suggestions of IV therapy if need be because the loss of body fluids whether it be thru vomiting or loose stools , both ,can cause an electrolyte imbalance, worth looking at by medical professionals.
I Hope you get answers soon.
Hugs
Love
Debbie
I'm sure sorry to hear of the bouts with ,can't candy coat, diarrhea .
The probotics can help ,as my limited understanding allows ,at this moment but have the doctors talked about possible dehydration?
How's Prairies appetite?
If it is going well there could be foods to avoid and or add too.
I have IBS so as and adult I've learened to manage that aspect , ie diarrehea. by avoiding certain drinks and foods
Bonni sure could be a great helper with suggestions of IV therapy if need be because the loss of body fluids whether it be thru vomiting or loose stools , both ,can cause an electrolyte imbalance, worth looking at by medical professionals.
I Hope you get answers soon.
Hugs
Love
Debbie
Debbie
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear MJ,
Thank you for your thoughtful update and apologies for being so slow to respond but we have been on a 10 day cruise on our boat on Puget Sound, and were "off the grid" without phone and computer access for most of the trip. I am so sorry that dear Prairie is experiencing increasing negative side effects from her Cediranib treatment, but unfortunately and sadly the side effects seem to be a common and chronic side effect of the drug
based on Brittany's now seven year Cediranib experience and that of other patients who I have followed on Cediranib. The diarrhea is one of the most common and debilitating side effects and one which Brittany heartbreakingly continues to struggle with as there doesn't seem to be a good remedy or preventative treatment for it . It is critically important to maintain hydration to prevent the severe headaches and vomiting that can result from diarrhea associated dehydration, and we have found that bi-monthly saline IV rehydration coupled with IV anti-nausea Zofran has thankfully prevented Brittany's prior severe vomiting episodes that previously resulted in emergency room trips and 2-3 day hospitalizations every couple of months for the first several years of Brittany's Cediranib treatment until we recognized that the cause of the episodes was severe dehydration and requested that her oncologist schedule regular IV rehydration for her. I don't personally know if reducing the Cediranib dosage will help reduce the side effects and the diarrhea because we have been reluctant to reduce Brittany's 30 mg. daily Cediranib dosage for fear of possibly jeopardizing her thankfully thus far very successful and sustained long term Cediranib response. However, we did reduce her initial 45 mg. daily dosage within the first two months because the side effects were too severe, and the side effects on the 30 mg. were, and have remained, more tolerable. I Hope that this information is helpful to you, and that you will be able to pursue regularly scheduled IV rehydration for dear Prairie to prevent possible diarrhea dehydration related severe headaches and vomiting. I Hope too that she is having a very successful response to the drug and that her next monitoring scans will show stable disease and significant shrinkage/disappearance of her brain and lung mets. I will be anxiously awaiting your next update, and continuing to hold precious Prairie, you, and your family very close in my heart and my most caring thoughts.
With special hugs, deepest caring, healing wishes, happy summertime thoughts, much love, and continued Hope,
Bonni
s
Thank you for your thoughtful update and apologies for being so slow to respond but we have been on a 10 day cruise on our boat on Puget Sound, and were "off the grid" without phone and computer access for most of the trip. I am so sorry that dear Prairie is experiencing increasing negative side effects from her Cediranib treatment, but unfortunately and sadly the side effects seem to be a common and chronic side effect of the drug
based on Brittany's now seven year Cediranib experience and that of other patients who I have followed on Cediranib. The diarrhea is one of the most common and debilitating side effects and one which Brittany heartbreakingly continues to struggle with as there doesn't seem to be a good remedy or preventative treatment for it . It is critically important to maintain hydration to prevent the severe headaches and vomiting that can result from diarrhea associated dehydration, and we have found that bi-monthly saline IV rehydration coupled with IV anti-nausea Zofran has thankfully prevented Brittany's prior severe vomiting episodes that previously resulted in emergency room trips and 2-3 day hospitalizations every couple of months for the first several years of Brittany's Cediranib treatment until we recognized that the cause of the episodes was severe dehydration and requested that her oncologist schedule regular IV rehydration for her. I don't personally know if reducing the Cediranib dosage will help reduce the side effects and the diarrhea because we have been reluctant to reduce Brittany's 30 mg. daily Cediranib dosage for fear of possibly jeopardizing her thankfully thus far very successful and sustained long term Cediranib response. However, we did reduce her initial 45 mg. daily dosage within the first two months because the side effects were too severe, and the side effects on the 30 mg. were, and have remained, more tolerable. I Hope that this information is helpful to you, and that you will be able to pursue regularly scheduled IV rehydration for dear Prairie to prevent possible diarrhea dehydration related severe headaches and vomiting. I Hope too that she is having a very successful response to the drug and that her next monitoring scans will show stable disease and significant shrinkage/disappearance of her brain and lung mets. I will be anxiously awaiting your next update, and continuing to hold precious Prairie, you, and your family very close in my heart and my most caring thoughts.With special hugs, deepest caring, healing wishes, happy summertime thoughts, much love, and continued Hope,
Bonni
s
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hi all.
Prairie is doing okay, and has maintained the 15mg per day to date. The changes we have implemented do seem to be helping.
In my opinion, there is to be better results with the afternoon dosing vs. the nighttime. She also seems to do better when she gets the naps, no question.
We may never know if the acupuncture or daily better probiotic is helping, but will stick with it. She has had a lot fewer diarrhea episodes and they are way less painful. We also give the anti diarrhea drug every other night even if she has no symptoms which seems good, as she experiences regular Bowles otherwise. Scans are next Thursday 25jun. They aren't doing the brain this time which leaves us with 4 months in between brain scans, so we will determine our comfort ability with that when we have results on the rest of her body next Thursday (2 months post her last brain MRI) I will keep u posted.
She has reported pain in the original pelvic tumor area in the last week which concerns me grately.
Take care all,
Mj
Prairie is doing okay, and has maintained the 15mg per day to date. The changes we have implemented do seem to be helping.
In my opinion, there is to be better results with the afternoon dosing vs. the nighttime. She also seems to do better when she gets the naps, no question.
We may never know if the acupuncture or daily better probiotic is helping, but will stick with it. She has had a lot fewer diarrhea episodes and they are way less painful. We also give the anti diarrhea drug every other night even if she has no symptoms which seems good, as she experiences regular Bowles otherwise. Scans are next Thursday 25jun. They aren't doing the brain this time which leaves us with 4 months in between brain scans, so we will determine our comfort ability with that when we have results on the rest of her body next Thursday (2 months post her last brain MRI) I will keep u posted.
She has reported pain in the original pelvic tumor area in the last week which concerns me grately.
Take care all,
Mj
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear MJ, Thank you for the thoughtful update. I am grateful that thus far dear Prairie has been able to continue with her 15 mg. daily Cediranib dosage, and that the dose scheduling, probiotics, acupuncture, and nap interventions that you have implemented seem to be helping to better control her negative Cediranib side effects. I am so sorry about her recent concerning primary tumor site pelvic pain, and am holding very tight to.Hope that it will resolve very soon and prove to be of a benign origin. My very best wishes and greatest Hope will be with you on June 25th for very good scan results that show stable disease and shrinkage/disappearance of her lung and brain mets. Brittany has her four month Clinical Trial chest/abdominal/pelvic scans and results appointments in Edmonton this Thursday and Friday June 23rd and 24th so, as always, our scanxiety is growing. Hopefully both you and I will have good news to share with the Board about our precious courageous daughters. In the meantme please take care and feel the embrace of my shared special hugs, deepest caring, healing wishes, love, and continued Hope, Bonni
Last edited by Bonni Hess on Mon Jun 20, 2016 9:28 pm, edited 1 time in total.
Re: 9year old, new diagnosis, pelvic primary w lung mets
Mary Jo and Prairie and familyVega343 wrote:Hi all.
Prairie is doing okay, and has maintained the 15mg per day to date. The changes we have implemented do seem to be helping.
In my opinion, there is to be better results with the afternoon dosing vs. the nighttime. She also seems to do better when she gets the naps, no question.
We may never know if the acupuncture or daily better probiotic is helping, but will stick with it. She has had a lot fewer diarrhea episodes and they are way less painful. We also give the anti diarrhea drug every other night even if she has no symptoms which seems good, as she experiences regular Bowles otherwise. Scans are next Thursday 25jun. They aren't doing the brain this time which leaves us with 4 months in between brain scans, so we will determine our comfort ability with that when we have results on the rest of her body next Thursday (2 months post her last brain MRI) I will keep u posted.
She has reported pain in the original pelvic tumor area in the last week which concerns me grately.
Take care all,
Mj
So glad you've found a nitch and regiment for Prairie to feel a little better in the doseage and digeastive issues
Please keep us upto date with questions and concerns as you are all in our thoughts and prayers today and always
Let us know of scan results when able
Love
Debbie and family (ies)
Debbie
Re: 9year old, new diagnosis, pelvic primary w lung mets
HI friends.
Happy to report that Prairie's scans this week resulted in stability for lung and pelvis. They didn't do brain scans as the Drs think this is too soon to note any difference and the rest of her body appears to be responding. The pelvis scan was open to interpretation, where the radiologist thought it showed swelling of existing tissue - it isn't confirmed to be regrowth, there has just been something there since surgery and study start. The dr disagreed, so they agreed to rescan pelvis next month for more information and because of her report of pain in the region.
There could be post op issues causing pain, but I know something has changed, but hopefully any cancer there is getting smothered. Apparently the pelvic region is difficult as there are so many things going on there.
They did decide to reduce her dose, and after 3-7 days off med, they will start 15mg 5 days a week instead of 7. This is due to her missing things she wants to do because of the diarrhea and fatigue. For example, she wouldn't be able to do a full school week the way things are going and same with a week long summer camp she is approaching in July. They think the dose she was on was well above required effective dose for her 63lbs anyway. Of course, nobody is sure. I have to trust them on this, they said everybody except one of the study was dose reduced at some point in time, some earlier than P.
So, inward and upward. She celebrated scans being done with obstacle course activity and trampoline park, so I guess I should count my blessings! When you are there, you see so many kids that wouldn't in any way be able to do that, it is very humbling of our situation.
Hope everyone is enjoying their summer to the most, thanks for caring and listening!
Mj
Happy to report that Prairie's scans this week resulted in stability for lung and pelvis. They didn't do brain scans as the Drs think this is too soon to note any difference and the rest of her body appears to be responding. The pelvis scan was open to interpretation, where the radiologist thought it showed swelling of existing tissue - it isn't confirmed to be regrowth, there has just been something there since surgery and study start. The dr disagreed, so they agreed to rescan pelvis next month for more information and because of her report of pain in the region.
There could be post op issues causing pain, but I know something has changed, but hopefully any cancer there is getting smothered. Apparently the pelvic region is difficult as there are so many things going on there.
They did decide to reduce her dose, and after 3-7 days off med, they will start 15mg 5 days a week instead of 7. This is due to her missing things she wants to do because of the diarrhea and fatigue. For example, she wouldn't be able to do a full school week the way things are going and same with a week long summer camp she is approaching in July. They think the dose she was on was well above required effective dose for her 63lbs anyway. Of course, nobody is sure. I have to trust them on this, they said everybody except one of the study was dose reduced at some point in time, some earlier than P.
So, inward and upward. She celebrated scans being done with obstacle course activity and trampoline park, so I guess I should count my blessings! When you are there, you see so many kids that wouldn't in any way be able to do that, it is very humbling of our situation.
Hope everyone is enjoying their summer to the most, thanks for caring and listening!
Mj
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear MJ,
Mother to mother I am sharing the great joy and relief of precious Prairie's Thursday's good and encouraging stable chest/pelvic/abdominal scan results along with Brittany's which we received yesterday in Edmonton, and which I will update in Brittany's Cediranib topic on the Board. Perhaps Olga can also move Prairie's updates to the Cediranib topic so that it can be more easily followed there by those who are interested in Cediranib treatment.
Did Prairie's chest scans show any shrinkage/disappearance of any of her lung mets when compared to her previous scans? I am sorry that there is some concerning pelvic tissue swelling and Hope that it will be determined that it is a benign easily treated/resolved post-op related swelling instead of tumor reoccurrence. I am grateful that the doctor is being vigilant in re-scanning in a month to more definitively determine the nature of the tissue swelling and the cause of dear Prairie's recent pelvic area pain because it is always best to be overly cautious rather than be too nonchalant and remiss in addressing any concerns with this insidious unpredictable disease.
Although I am not a doctor, I personally disagree with and am concerned about the doctors' decision to not also follow Prairie's multiple brain mets with more frequent brain scans every three months given the documented nature of ASPS brain mets to develop and grow much more rapidly than mets elsewhere in the body, but I am holding very tight to Hope that the Cediranib is working to prevent development of new brain mets and to shrink and destroy the existing ones. Since some of the side effects of Cediranib include headaches and muscle weakness it is difficult to determine if those symptoms are Cediranib related or symptomatic of brain mets which makes vigilant brain MRI scanning additionally important.
I Hope that the reduced Cediranib dosage continues to provide disease stability for dear Prairie while allowing her to more actively participate in and enjoy her normal childhood activities with fewer debilitating side effects from the Cediranib.
Take care dear MJ, please give dear Prairie and yourself celebratory hugs and High 5's, enjoy a beautiful and happy start to the summer with strengthened Hope in your heart, and keep the Board updated as you are able.
Sharing precious Prairie's good scan results and disease stability with great joy, special caring thoughts, healing wishes, love, and continued Hope,
Bonni
Mother to mother I am sharing the great joy and relief of precious Prairie's Thursday's good and encouraging stable chest/pelvic/abdominal scan results along with Brittany's which we received yesterday in Edmonton, and which I will update in Brittany's Cediranib topic on the Board. Perhaps Olga can also move Prairie's updates to the Cediranib topic so that it can be more easily followed there by those who are interested in Cediranib treatment.
Did Prairie's chest scans show any shrinkage/disappearance of any of her lung mets when compared to her previous scans? I am sorry that there is some concerning pelvic tissue swelling and Hope that it will be determined that it is a benign easily treated/resolved post-op related swelling instead of tumor reoccurrence. I am grateful that the doctor is being vigilant in re-scanning in a month to more definitively determine the nature of the tissue swelling and the cause of dear Prairie's recent pelvic area pain because it is always best to be overly cautious rather than be too nonchalant and remiss in addressing any concerns with this insidious unpredictable disease.
Although I am not a doctor, I personally disagree with and am concerned about the doctors' decision to not also follow Prairie's multiple brain mets with more frequent brain scans every three months given the documented nature of ASPS brain mets to develop and grow much more rapidly than mets elsewhere in the body, but I am holding very tight to Hope that the Cediranib is working to prevent development of new brain mets and to shrink and destroy the existing ones. Since some of the side effects of Cediranib include headaches and muscle weakness it is difficult to determine if those symptoms are Cediranib related or symptomatic of brain mets which makes vigilant brain MRI scanning additionally important.
I Hope that the reduced Cediranib dosage continues to provide disease stability for dear Prairie while allowing her to more actively participate in and enjoy her normal childhood activities with fewer debilitating side effects from the Cediranib.
Take care dear MJ, please give dear Prairie and yourself celebratory hugs and High 5's, enjoy a beautiful and happy start to the summer with strengthened Hope in your heart, and keep the Board updated as you are able.
Sharing precious Prairie's good scan results and disease stability with great joy, special caring thoughts, healing wishes, love, and continued Hope,
Bonni
Re: 9year old, new diagnosis, pelvic primary w lung mets
.Vega343 wrote:HI friends.
Happy to report that Prairie's scans this week resulted in stability for lung and pelvis. They didn't do brain scans as the Drs think this is too soon to note any difference and the rest of her body appears to be responding. The pelvis scan was open to interpretation, where the radiologist thought it showed swelling of existing tissue - it isn't confirmed to be regrowth, there has just been something there since surgery and study start. The dr disagreed, so they agreed to rescan pelvis next month for more information and because of her report of pain in the region.
There could be post op issues causing pain, but I know something has changed, but hopefully any cancer there is getting smothered. Apparently the pelvic region is difficult as there are so many things going on there.
They did decide to reduce her dose, and after 3-7 days off med, they will start 15mg 5 days a week instead of 7. This is due to her missing things she wants to do because of the diarrhea and fatigue. For example, she wouldn't be able to do a full school week the way things are going and same with a week long summer camp she is approaching in July. They think the dose she was on was well above required effective dose for her 63lbs anyway. Of course, nobody is sure. I have to trust them on this, they said everybody except one of the study was dose reduced at some point in time, some earlier than P.
So, inward and upward. She celebrated scans being done with obstacle course activity and trampoline park, so I guess I should count my blessings! When you are there, you see so many kids that wouldn't in any way be able to do that, it is very humbling of our situation.
Hope everyone is enjoying their summer to the most, thanks for caring and listening!
Mj
MJ and Family
Great news! I love your zeal for life as is apparent in the trampoline celebration..
In scheduling the scans a little ways out could it be to your benefit so as to not perliminarily have a scan report an activity as in the TKI attacking the tumor(s) and showing a false positive to progression type effect and thus disqualifying Prairie from the trial? I suspect that in lowering the doseage that results of cedirinib good effects may ,consequently ,
be delayed as well.
Prairie is about 90 days out from first dose?
I so hope along with Bonni that the swelling is a result of something benign .
So happy that Prairie is feeling better
Love
Debbie
Debbie
Re: 9year old, new diagnosis, pelvic primary w lung mets
July update,
No scans this month, they decided to postpone the planned pelvic scan to August when the full scan schedule will happen based on her report of less pain at the site.
Labs and blood pressure were good and she is tolerating the reduced dose of 15mg 5 days a week vs. the 7 day schedule much better. Minimal diarrhea and really noticeable increased energy. She is keeping up with her friends now including sleepovers and all. Being with her girlfriends makes her the happiest!
Prairie also turned 10 this July! The birthday was a little somber as its our first experience with birthday since dX last year, as it makes you (and her) think about what's to come. Just the same, a moment to celebrate and love life. I'm sure many on this site can appreciate the range of emotions.
We will keep you posted about August, scans currently scheduled for 18aug.
Take care,
Mj
No scans this month, they decided to postpone the planned pelvic scan to August when the full scan schedule will happen based on her report of less pain at the site.
Labs and blood pressure were good and she is tolerating the reduced dose of 15mg 5 days a week vs. the 7 day schedule much better. Minimal diarrhea and really noticeable increased energy. She is keeping up with her friends now including sleepovers and all. Being with her girlfriends makes her the happiest!
Prairie also turned 10 this July! The birthday was a little somber as its our first experience with birthday since dX last year, as it makes you (and her) think about what's to come. Just the same, a moment to celebrate and love life. I'm sure many on this site can appreciate the range of emotions.
We will keep you posted about August, scans currently scheduled for 18aug.
Take care,
Mj
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear MJ,
It was so good to hear from you and I am very grateful for your thoughtful update as dear Prairie, you, and your family have been so much on my mind. Happy belated Double Digits 10th Birthday
to dear Prairie and VERY best wishes for her and your wishes to come true for a coming year filled with a VERY successful Cediranib response, complete healing, and renewed good health. I am so happy that the reduced Cediranib dosage has significantly reduced her side effects, and that she has been able to resume her normal childhood activities and sharing happy and fun times together with her young girlfriends . I am so grateful that she is now having reduced concerning pain at her primary resection site, and Hope that she continues to feel good with increased energy. My most special thoughts and very best wishes will be with you on August 18th for VERY GOOD scan results which show disease stability, no new tumors, and shrinking and disappearing mets, and I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, have a beautiful summer shared together with dear Prairie and all of your family, and keep loving and celebrating Life with Hope leading you through each precious day. Heart to heart with special caring thoughts, healing wishes, lots of love, and continued Hope, Bonni
It was so good to hear from you and I am very grateful for your thoughtful update as dear Prairie, you, and your family have been so much on my mind. Happy belated Double Digits 10th Birthday
to dear Prairie and VERY best wishes for her and your wishes to come true for a coming year filled with a VERY successful Cediranib response, complete healing, and renewed good health. I am so happy that the reduced Cediranib dosage has significantly reduced her side effects, and that she has been able to resume her normal childhood activities and sharing happy and fun times together with her young girlfriends . I am so grateful that she is now having reduced concerning pain at her primary resection site, and Hope that she continues to feel good with increased energy. My most special thoughts and very best wishes will be with you on August 18th for VERY GOOD scan results which show disease stability, no new tumors, and shrinking and disappearing mets, and I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, have a beautiful summer shared together with dear Prairie and all of your family, and keep loving and celebrating Life with Hope leading you through each precious day. Heart to heart with special caring thoughts, healing wishes, lots of love, and continued Hope, BonniRe: 9year old, new diagnosis, pelvic primary w lung mets
Thanks for all the nice comments friends!
Our visit was (regretfully) rescheduled to August 25th. I messed things up asking for a reschedule so she could try out for volleyball, not realizing she would be off the ceridinib in the 5 day meantime. They can't put us back so it is what it is. I won't try to reschedule in the future as that simply isn't worth it to me, although the docs don't think it's an issue.
Will keep you posted in a few weeks!
Mj
Our visit was (regretfully) rescheduled to August 25th. I messed things up asking for a reschedule so she could try out for volleyball, not realizing she would be off the ceridinib in the 5 day meantime. They can't put us back so it is what it is. I won't try to reschedule in the future as that simply isn't worth it to me, although the docs don't think it's an issue.
Will keep you posted in a few weeks!
Mj