Hello all...
Aidan is having his MRI tomorrow (Friday) morning. He are hopeful and optimistic that the results will be fantastic.
Please keep us in your thoughts and prayers.
I will be in touch.
Thursday, January 28, 2010
Friday, January 22, 2010
Friday, January 22, 2010 11:15am
Hello friends,
I first want to thank you for all of your cards, e-mails and well wishes.
Aidan remains in the icu...
We have been battling high fevers and some infections due to his immune suppression from the chemo. We expect to see some rebounding of his white cells throughout this next week.
Some very positive things have happened over the past 10 days.
Aidan was able to come off of the ventilator 2 days ago without incident. He has been weaned off of his sedation, steroids, and high dose sodium/mannitol IVs for the brain swelling. His neurosurgeon has removed 2 of the 3 drains in his head. They were able to remove his arterial line and his catheter. Our little man is being, what we call, "de-tubed" left and right...it's very exciting (clearly, we have been here too long).
Aidan is tolerating his increasing NG tube feedings well. However, he continues to be on IV support so that his nutritional needs are met.
We have spoke to his neuro-oncologist regarding his next round of chemo. Aidan will have another MRI prior to see disease status. As I have already shared with you, Aidan has the most aggressive subtype of medulloblastoma. If the tumor spread remains relatively unchanged (or better yet, shows tumor regression), he will begin his next round within the next couple of weeks. If, however, we see a significant increase in tumor spread, it is unlikely that we will move forward with further treatment. We are hopeful that the scan is reflective of the positive response we saw immediately after his first round of chemo.
We ask for your continued prayers to restore Aidan to good health.
Hopefully, the next time I update, we will be back to the neuro/oncology floor as now there is little reason to keep him in ICU.
Again, thank you for all of your kindnesses and I will update soon.
I first want to thank you for all of your cards, e-mails and well wishes.
Aidan remains in the icu...
We have been battling high fevers and some infections due to his immune suppression from the chemo. We expect to see some rebounding of his white cells throughout this next week.
Some very positive things have happened over the past 10 days.
Aidan was able to come off of the ventilator 2 days ago without incident. He has been weaned off of his sedation, steroids, and high dose sodium/mannitol IVs for the brain swelling. His neurosurgeon has removed 2 of the 3 drains in his head. They were able to remove his arterial line and his catheter. Our little man is being, what we call, "de-tubed" left and right...it's very exciting (clearly, we have been here too long).
Aidan is tolerating his increasing NG tube feedings well. However, he continues to be on IV support so that his nutritional needs are met.
We have spoke to his neuro-oncologist regarding his next round of chemo. Aidan will have another MRI prior to see disease status. As I have already shared with you, Aidan has the most aggressive subtype of medulloblastoma. If the tumor spread remains relatively unchanged (or better yet, shows tumor regression), he will begin his next round within the next couple of weeks. If, however, we see a significant increase in tumor spread, it is unlikely that we will move forward with further treatment. We are hopeful that the scan is reflective of the positive response we saw immediately after his first round of chemo.
We ask for your continued prayers to restore Aidan to good health.
Hopefully, the next time I update, we will be back to the neuro/oncology floor as now there is little reason to keep him in ICU.
Again, thank you for all of your kindnesses and I will update soon.
Tuesday, January 12, 2010
Tuesday, January 12, 2010 9:52pm
Hello dear friends,
I write again with positive news...
Aidan has completed his first round of chemo and tolerated it quite well. He now has 21 days off until round 2.
He started breathing over the ventilator (taking some breaths on his own) yesterday evening. That itself is excellent news...brainstem function is a good thing. We were very worried due to the amount of compression from the cerebellum as to the integrity of the respiratory center. Tears of joy...
Aidan had another MRI this afternoon which demonstrated considerable improvement in all areas. At first it was hard to believe that it was Aidan's study as the difference was so drastic.
We remain in ICU and, if all continues to go smoothly, will probably be here for the next handful of days before transfer back to the neuro unit.
We thank you for all of your well wishes and prayers. Aidan has a long road ahead of him and we ask for your continued prayers for him and the success of his chemo. We also ask for your prayers to bless Dr. Tord Alden and his neurosurgical team as he has truly saved our son's life twice in the past few weeks.
I will be in touch with updates as I am able.
I write again with positive news...
Aidan has completed his first round of chemo and tolerated it quite well. He now has 21 days off until round 2.
He started breathing over the ventilator (taking some breaths on his own) yesterday evening. That itself is excellent news...brainstem function is a good thing. We were very worried due to the amount of compression from the cerebellum as to the integrity of the respiratory center. Tears of joy...
Aidan had another MRI this afternoon which demonstrated considerable improvement in all areas. At first it was hard to believe that it was Aidan's study as the difference was so drastic.
We remain in ICU and, if all continues to go smoothly, will probably be here for the next handful of days before transfer back to the neuro unit.
We thank you for all of your well wishes and prayers. Aidan has a long road ahead of him and we ask for your continued prayers for him and the success of his chemo. We also ask for your prayers to bless Dr. Tord Alden and his neurosurgical team as he has truly saved our son's life twice in the past few weeks.
I will be in touch with updates as I am able.
Saturday, January 9, 2010
Saturday, January 9, 2010 9:46pm
Hello friends...
Thankfully, I am finally writing with a little bit of positive news.
We are thankful that Aidan has stayed out of surgery for the past few days (thank you uncle Matt- Matt for having a talk with him "no more shenanigans").
He had another MRI today which showed some improvement in that his cerebellum has relaxed a little bit more into the space that the surgeons had made for it in the last couple of surgeries.
The drains are performing well and are keeping the CSF from increasing in the ventricles.
As I write this he is undergoing his 2nd doses of chemo. Day 1 went very well. So far so good. Aidan remains in the ICU on a ventilator and we anticipate being here for a few more days. Hopefully, he will move back to the neuro unit in the coming week.
I ask that you pray for his chemo to be a great success.
We so appreciate all of your acts of kindness, prayers and well wishes.
I will continue to be in touch.
Thankfully, I am finally writing with a little bit of positive news.
We are thankful that Aidan has stayed out of surgery for the past few days (thank you uncle Matt- Matt for having a talk with him "no more shenanigans").
He had another MRI today which showed some improvement in that his cerebellum has relaxed a little bit more into the space that the surgeons had made for it in the last couple of surgeries.
The drains are performing well and are keeping the CSF from increasing in the ventricles.
As I write this he is undergoing his 2nd doses of chemo. Day 1 went very well. So far so good. Aidan remains in the ICU on a ventilator and we anticipate being here for a few more days. Hopefully, he will move back to the neuro unit in the coming week.
I ask that you pray for his chemo to be a great success.
We so appreciate all of your acts of kindness, prayers and well wishes.
I will continue to be in touch.
Thursday, January 7, 2010
Thursday, January 7, 2010 9:45pm
Hello dearest friends,
I am hoping that one day soon, I will update with good news...
I believe that I last updated you on the 5th when they took Aidan to surgery to perform the craniotomy and remove part of his cerebellum.
After that surgery, he was moved to the ICU.
Things were looking very good all day on the 6th...Aidan was responding to our voices and opening his eyes to look at us. All was well until about 5pm. His symptoms began again. Another MRI was performed which showed a pocket of fluid filling up behind the cerebellum not allowing it to descend into the space the surgeons made for it the day prior. Aidan was, once again, immediately taken back to surgery. They took out more the the bone in the back of his head and removed even more of the cerebellum (1/3 in total of the left hemishere). They added 2 more drains so that fluid does not accumulate again in the posterior fossa.
Aidan remains in the ICU. The neurosurg and neuro-oncology team are unclear as to why Aidan's cerebellum has swollen up in the manner it has. It was decided today that he will begin his chemo tomorrow. We have run out of surgical options to create more room for the swelling and time is of the essence. The conditions for chemo are far from ideal. Aidan has 2 extraventricular drains and 1 subarachnoid drain in place and is also on a ventilator. His risk of infection is extremely high. However, at this point, it is everyone's hope that it will allow for a decrease in the cerebellar swelling and begin his long road to recovery.
Please continue to keep us in your prayers. I will update you as I am able.
Thank you all for caring, for praying, for hoping....
I am hoping that one day soon, I will update with good news...
I believe that I last updated you on the 5th when they took Aidan to surgery to perform the craniotomy and remove part of his cerebellum.
After that surgery, he was moved to the ICU.
Things were looking very good all day on the 6th...Aidan was responding to our voices and opening his eyes to look at us. All was well until about 5pm. His symptoms began again. Another MRI was performed which showed a pocket of fluid filling up behind the cerebellum not allowing it to descend into the space the surgeons made for it the day prior. Aidan was, once again, immediately taken back to surgery. They took out more the the bone in the back of his head and removed even more of the cerebellum (1/3 in total of the left hemishere). They added 2 more drains so that fluid does not accumulate again in the posterior fossa.
Aidan remains in the ICU. The neurosurg and neuro-oncology team are unclear as to why Aidan's cerebellum has swollen up in the manner it has. It was decided today that he will begin his chemo tomorrow. We have run out of surgical options to create more room for the swelling and time is of the essence. The conditions for chemo are far from ideal. Aidan has 2 extraventricular drains and 1 subarachnoid drain in place and is also on a ventilator. His risk of infection is extremely high. However, at this point, it is everyone's hope that it will allow for a decrease in the cerebellar swelling and begin his long road to recovery.
Please continue to keep us in your prayers. I will update you as I am able.
Thank you all for caring, for praying, for hoping....
Tuesday, January 5, 2010
Tuesday, January 5, 2010 11:51am
Hello friends
I am in complete disbelief that I am updating you again so soon.
As I write this Aidan is in surgery again. Over the past 24 hours, there have been some significant changes.
Aidan's cerebellum has swollen to the point where it is impacting his brainstem which basically controls everything (breathing, swallowing, vision, etc.) His surgeons are performing a decompression surgery which entails removing part of his skull and potentially part of the cerebellum itself.
Please continue to keep us in your prayers and I will be in touch.
I am in complete disbelief that I am updating you again so soon.
As I write this Aidan is in surgery again. Over the past 24 hours, there have been some significant changes.
Aidan's cerebellum has swollen to the point where it is impacting his brainstem which basically controls everything (breathing, swallowing, vision, etc.) His surgeons are performing a decompression surgery which entails removing part of his skull and potentially part of the cerebellum itself.
Please continue to keep us in your prayers and I will be in touch.
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