Tuesday, October 15, 2013
Prior to Duke trip 10/21/13 (sorry for the formatting, blogger is having issues)
Hello….anyone still there??!? I know I haven’t been writing much at all but in the brain tumor world that is a VERY good thing, it means things are boring and boring is always good! Since our last trip to Duke in June nothing has really changed. Rion had his local MRI in August which of course showed no new enhancement and is stable compared to the last one. He still has his mini/partial seizures sporatically but we are both comfortable with the frequency/intensity and do not want to monkey with his medication dosage to try & control them. So truly nothing new has developed.
We do have a few things that we wanted to share…
1) Neurological testing: At our last appointment at Duke we pressed the PA to set up the neurological testing that was supposed to have been done some time last year. This would be to get a ‘baseline’ idea of how Rion’s brain is working to compare future tests to if we suspect there is change. It is a very lengthy & tedious process- the test is done one on one with a neuro-psyciatrist and usually takes 4-6 hours. Logistically it was almost impossible to work out- the test was going to be too draining to do in addition to our normal trip so it would involve a separate trip back to Duke sometime between June & October. In August after careful consideration we decided not to pursue the testing at this time. Logistics aside, we weren’t in a place financially to pay for another trip that we both didn’t feel was necessary. We know from the basic neurological exam that Rion has each time we see the neuro-oncologist what his strengths & weaknesses are- he has some coordination issues, his short term memory is a thing of the past & whatever you do, don’t ask him to subtract double digits in his head (we laugh about the last one because they ALWAYS give him the same math problem so he just memorized the answers which totally impressed them in June.) But physically he is great- his reflexes are good, no muscle weakness and on the outside he is still the model of good health. We may decide in the future to have the neurological testing done, specifically if an issue comes up that we are unsure how to treat, but for now we are confident in our decision to hold off.
2) Speaking of outside vs inside heath. Rion has developed a new (yay!) health problem that we assume must be a result of all of this somehow…high blood pressure. All throughout surgery, radiation, chemo his blood pressure remained great usually right under 120/80 but right after Grant was born in April it has slowly start to creep up. At first it was assumed it was due to the stress & lack of sleep from having a new born, but even as Grant started to sleep better & we feel into (kinda) a routine, Rion’s blood pressure continued to increase. At one point in August he tested it at a pharmacy one Saturday and it was 145/90- YIKES! Luckily he had an appointment at his local oncologist (who he was still seeing every month for blood work & refills on his medication) already scheduled for the following week so he brought it up then. They agreed it was probably best to prescribe him a blood pressure medication (Lisinopril 10mg) since it did not appear to be getting better on its own. In addition to the medication, we are also striving to eat a low sodium diet and limit alcohol & sugar. Striving is a good word to describe what we’re doing because with a baby & me going back to work, eating healthy is hit or miss these days. But the good news is that Rion has been checking his blood pressure periodically and so far it’s trending down. Some days are better than others but at least it’s not going up any longer.
3) I can’t remember if I brought it up on the blog before or not (and I’m too busy to look right now…) but back in December of last year we doubled Rion’s anti-depressant. He has been on Celexa since diagnosis 11/2011- always taking 20mg once a day. When his grandmother passed away unexpectedly December 2012 plus me being pregnant he really started struggling so we changed his dosage to 40mg once a day. It definitely helped but unfortunately it came with some undesirable side effects. He backed off back to 20mg about 2 months ago and while the side effects are gone, and he is not necessarily depressed, he has had a noticeable change in his temperament. He is much quicker to anger and has a pretty wicked temper. With all of the changes going on & the accompanying stress (I went back to work in August at a new job which is across town after being off work for 4 months, Rion is working full time again, and Grant is teething) it’s hard to tell what is depression/anxiety & what is normal stress. But we will talk to Duke about this and I think try to switch his medication to see if we have luck with another one.
I think that is pretty much about it. Because this blog was started to document our journey treating Morton I hesitate to share much about our lives now that Morton isn’t the focal point. But I do think it’s important to point out that we ARE living a normal life for the most part. Rion is a wonderful daddy to Grant, just listen to the way he talks about him and you can’t help but notice the love and pride in his voice. From a medical point of view, the only effect Morton has on his parenting is sometimes his memory & attention span isn’t functioning at 100% (but that is probably true for most new parents.) Rion works really hard to overcome this- from making lists to making sure we keep everything in a specific place, we do a good job in making these things a non-issue. There have only been 1 or 2 instances where he did something that could have been dangerous (and nothing bad happened so it’s hardly worth bringing up.) I guess my point is that the best advice we’ve received along this whole journey was how important it was to keep living our lives like we normally would- plan for the future, don’t put off major decisions, just keep on keepin’ on!
Monday, August 5, 2013
No news is good news
Hi! I wonder if there are even any readers left since it has been so long since I last updated. But there is really nothing new going on with Rion and we have been super busy with the birth of our little man in April.
Rion had an MRI at Duke in February, then here local in April & back up at Duke in June. We actually got to compare the June & February scans side by side and it's clear he is still showing improvements. He has another scan scheduled for later this month; we will continue on with the every 2 month schedule, alternating between our local oncologist & going to Duke.
Our son Grant was born April 20, 2013. His full name is Grant Ezra Henderson. No reason for the names (everyone asks!) it was just the only thing we could agree on. If we ever have another boy he will probably have to be named Rion Jr or something LOL I was blessed with being able to take 4 months off work & I will be starting a new job August 19th. God works in mysterious ways and I have been blessed with a fantastic new job opportunity, it is truly a dream job and I hope I will be able to stay with this company indefinitely.
Rion has adjusted amazingly to becoming a Daddy and he loves it more than words can describe. I enjoy so much watching him with Grant, he really is a natural. He is so loving & protective, sometimes I regret waiting as long as we did to have a child (our 7 year anniversary is next week) but then I remember how stressful last year was and I'm grateful I didn't have anything more on my plate. Since things are some what stable and normal again I can devote all of my time & attention to Grant which makes us all happy.
Rion still continues to have his partial seizures- he hardly ever has the "clicking seizure" but it still pops up from time to time. More often than not he has the seizures that he describes as feeling like a panic attack on steroids. He has had one while caring for Grant and he is able to work through it without losing consciousness or awareness. It just becomes difficult for him to focus on anything else at the moment but it passes relatively quickly (usually under a minute.) I have complete confidence that the seizures do not pose a danger to Grant and if they ever became that severe Rion would let me know.
That is really all that has been going on with us. Until something changes I do not foresee myself updating the blog. I think there is some way you can elect to follow the blog through e-mail so you will be notified when I post something new.
Thank you for continuing to pray for us.
Emily & Rion
Rion had an MRI at Duke in February, then here local in April & back up at Duke in June. We actually got to compare the June & February scans side by side and it's clear he is still showing improvements. He has another scan scheduled for later this month; we will continue on with the every 2 month schedule, alternating between our local oncologist & going to Duke.
Our son Grant was born April 20, 2013. His full name is Grant Ezra Henderson. No reason for the names (everyone asks!) it was just the only thing we could agree on. If we ever have another boy he will probably have to be named Rion Jr or something LOL I was blessed with being able to take 4 months off work & I will be starting a new job August 19th. God works in mysterious ways and I have been blessed with a fantastic new job opportunity, it is truly a dream job and I hope I will be able to stay with this company indefinitely.
Rion has adjusted amazingly to becoming a Daddy and he loves it more than words can describe. I enjoy so much watching him with Grant, he really is a natural. He is so loving & protective, sometimes I regret waiting as long as we did to have a child (our 7 year anniversary is next week) but then I remember how stressful last year was and I'm grateful I didn't have anything more on my plate. Since things are some what stable and normal again I can devote all of my time & attention to Grant which makes us all happy.
Rion still continues to have his partial seizures- he hardly ever has the "clicking seizure" but it still pops up from time to time. More often than not he has the seizures that he describes as feeling like a panic attack on steroids. He has had one while caring for Grant and he is able to work through it without losing consciousness or awareness. It just becomes difficult for him to focus on anything else at the moment but it passes relatively quickly (usually under a minute.) I have complete confidence that the seizures do not pose a danger to Grant and if they ever became that severe Rion would let me know.
That is really all that has been going on with us. Until something changes I do not foresee myself updating the blog. I think there is some way you can elect to follow the blog through e-mail so you will be notified when I post something new.
Thank you for continuing to pray for us.
Emily & Rion
Friday, February 22, 2013
We're still here!
I can't believe it has been over a month since I posted last but then again I can because life has been so busy lately!
Rion got his MRI results FINALLY last week from the MRI he had January 4th. Apparently there was some confusion at the local oncologists office and they forgot to send it to Duke. I went with Rion to his local appointment January 15th and all they could say was "yup, looks like he had a brain tumor removed, can't tell if any of the areas lighting up are of any concern." Hmmmm. So we asked them to send the scan to Duke so they could compare it with his last one and after 2.5 weeks of phone calls and e-mails to follow up I finally just had Rion get a copy from the hospital and I mailed it myself. Going forward that is the route we will be taking when he has the MRIs done locally. Entirely too much work for something that should have been handled automatically! But the good news is the MRI is still categorized as stable so while it appears there are no more improvements to be seen from the chemo/radiation, there are also no new areas of concern.
So even though we just got the results last week we are still going to Duke next week for Rion's next MRI & oncologist appointment. We have a good deal we'd like to discuss with them while we are there besides the obvious (how does the new MRI look?!?) First off, there is a screw head that we can feel through Rion's skin and it's quite painful to the touch. We believe it might be driven through a nerve or causing some sort of nerve disruption. If we accidentally touch that spot it will literally bring tears to his eyes. We're hoping they will have a solution, even if it means removing the screw or moving it.
We would also like to bring up the possibility of have Rion tested for adult ADHD- you can read more about adult ADHD here. It's impossible to tell what side effects are tumor related and what were caused by the chemo/radiation but the bottom line is that we do not see things improving past where they are now. I don't know if they would even consider a diagnosis of ADHD given what he has been through but we figure it doesn't hurt to ask. Especially if it could be treated. It is very frustrating for Rion to be so forgetful and absentminded when that is not how he was before all of this started. He expressed last week that working on projects takes him double the time that it used to, he has a hard time staying focused on what he's doing and going about the project in the most efficient manner. I have never seem him so discouraged. We knew realistically it would be unlikely that Rion would be the same person today that he was prior to brain surgery, radiation & chemo but it's still very hard to deal with.
To be honest it's very hard for me to deal with as well. If you know me, you know that I am a VERY type- A person. I thrive on organization & efficiency (if I didn't I have no clue how we would have survived all the juggling we had to do this past year) and it drives me nuts when things are unorganized or chaotic. There have been more times than I want to admit that I have lost my cool & yelled at Rion for not doing something quick enough or other wise to my liking. I can't begin to express how much I regret this. I feel like the worst person in the world when this happens. I should be thankful every day I have with him, not griping about how cluttered the basement is or how long it is taking him to refinish a piece of furniture for our nursery. I want to see if there is any way we can help Rion with these problems as much for myself as I do for him- which is horrible! But if we're being honest here it's the truth. I love Rion will all of my heart and I will stand by him the rest of my life but some times things are much more difficult than I ever imagined they would be.
Ok enough about that!
I can't really think of anything else we are going to bring up at Duke except to confirm we are still on the schedule of having MRIs done in Georgia every 2 months and at Duke every 2 months. It will be nice if we only have to make 4 trips up there this year (compared to the SEVEN we made last year.) Especially since our little one will be here before too long!
I promise to try & be better about posting our MRI results in a more timely manner as well as addressing any issues/concerns that come up. We are just trying to live our lives as normally as possible these days which is some times easier said than done. Rion still has partial seizures and they seem to get worse when he is tired and/or stressed. The past few weeks we have seen an increase in frequency again which we can only attribute to the anxiety he feels about the upcoming trip. We continue to be grateful for all of our family & friends that have been there for us over the past year and hope that one day we can pay it forward and help someone else in need as we have been helped.
God Bless,
Emily
Rion got his MRI results FINALLY last week from the MRI he had January 4th. Apparently there was some confusion at the local oncologists office and they forgot to send it to Duke. I went with Rion to his local appointment January 15th and all they could say was "yup, looks like he had a brain tumor removed, can't tell if any of the areas lighting up are of any concern." Hmmmm. So we asked them to send the scan to Duke so they could compare it with his last one and after 2.5 weeks of phone calls and e-mails to follow up I finally just had Rion get a copy from the hospital and I mailed it myself. Going forward that is the route we will be taking when he has the MRIs done locally. Entirely too much work for something that should have been handled automatically! But the good news is the MRI is still categorized as stable so while it appears there are no more improvements to be seen from the chemo/radiation, there are also no new areas of concern.
So even though we just got the results last week we are still going to Duke next week for Rion's next MRI & oncologist appointment. We have a good deal we'd like to discuss with them while we are there besides the obvious (how does the new MRI look?!?) First off, there is a screw head that we can feel through Rion's skin and it's quite painful to the touch. We believe it might be driven through a nerve or causing some sort of nerve disruption. If we accidentally touch that spot it will literally bring tears to his eyes. We're hoping they will have a solution, even if it means removing the screw or moving it.
We would also like to bring up the possibility of have Rion tested for adult ADHD- you can read more about adult ADHD here. It's impossible to tell what side effects are tumor related and what were caused by the chemo/radiation but the bottom line is that we do not see things improving past where they are now. I don't know if they would even consider a diagnosis of ADHD given what he has been through but we figure it doesn't hurt to ask. Especially if it could be treated. It is very frustrating for Rion to be so forgetful and absentminded when that is not how he was before all of this started. He expressed last week that working on projects takes him double the time that it used to, he has a hard time staying focused on what he's doing and going about the project in the most efficient manner. I have never seem him so discouraged. We knew realistically it would be unlikely that Rion would be the same person today that he was prior to brain surgery, radiation & chemo but it's still very hard to deal with.
To be honest it's very hard for me to deal with as well. If you know me, you know that I am a VERY type- A person. I thrive on organization & efficiency (if I didn't I have no clue how we would have survived all the juggling we had to do this past year) and it drives me nuts when things are unorganized or chaotic. There have been more times than I want to admit that I have lost my cool & yelled at Rion for not doing something quick enough or other wise to my liking. I can't begin to express how much I regret this. I feel like the worst person in the world when this happens. I should be thankful every day I have with him, not griping about how cluttered the basement is or how long it is taking him to refinish a piece of furniture for our nursery. I want to see if there is any way we can help Rion with these problems as much for myself as I do for him- which is horrible! But if we're being honest here it's the truth. I love Rion will all of my heart and I will stand by him the rest of my life but some times things are much more difficult than I ever imagined they would be.
Ok enough about that!
I can't really think of anything else we are going to bring up at Duke except to confirm we are still on the schedule of having MRIs done in Georgia every 2 months and at Duke every 2 months. It will be nice if we only have to make 4 trips up there this year (compared to the SEVEN we made last year.) Especially since our little one will be here before too long!
I promise to try & be better about posting our MRI results in a more timely manner as well as addressing any issues/concerns that come up. We are just trying to live our lives as normally as possible these days which is some times easier said than done. Rion still has partial seizures and they seem to get worse when he is tired and/or stressed. The past few weeks we have seen an increase in frequency again which we can only attribute to the anxiety he feels about the upcoming trip. We continue to be grateful for all of our family & friends that have been there for us over the past year and hope that one day we can pay it forward and help someone else in need as we have been helped.
God Bless,
Emily
Friday, January 4, 2013
Happy New Years (update of sorts)
Happy New Years to everyone who still keeps up with our blog! Words can not describe how relieved Rion and I both are to have 2012 behind us. 2013 is surely going to be a much, much better year for us.
Rion for the most part has been doing really well. We have found that he still has the partial sensory seizures occasionally- specifically when he is tired, dehydrated or stressed. His grandmother passed away very unexpectedly in December and for a few days he was having multiple seizures every day. As things have gone "back to normal" and he has begun the grieving process, the seizures have all but stopped. We have decided (along with the doctors) to increase his anti-depressant medication to see if that will help how his body responds to stressful & emotional situations. I don't think I will ever get used to him having seizures or get over my fear that he is going to have another major seizure like the one that started this all. But for the most part he is happy & healthy and really trying to not let his condition dictate how he lives his life.
Speaking for back to normal, Rion is very glad to be back working. He is helping out at his cousin's antique mall right down the road from our house. It is a great situation because his schedule is flexible and it allows him be out & around people (and if you know Rion, you know he's a people person.) He is still seeing his local oncologist once a month for lab work & I'm assuming we will continue to visit the folks at Duke quarterly (and having local MRI's quarterly) so having a flexible schedule is important. (So is having someone that understands that Rion may have good & bad days and not get upset at him for it.) It is so nice for both of us to have him out of the house most of the day instead of him feeling isolated; I've hesitated to make plans for after work & on the weekends with my friends these past few months because I feel so bad that he was at home by himself most of time. Having something to do all day really takes a lot of stress off of both of us.
I am doing great as well. I am almost 24 weeks (6 months) pregnant and we found out in November that we are expecting a baby boy in April. To say that Rion is excited would be an under statement- he was literally speechless when the ultrasound technician revealed the sex to us. Now that the holidays are over we are focusing most of our spare time/energy on preparing for the baby. That currently involves finishing a room in our basement so that we can totally empty out & re-do the room that will be the nursery (it is currently used for storage & as an office type room.) I am blessed to have such a wonderful husband who has done 99% of the work finishing the room in the basement and all we lack is carpet to have the room completed (something he does NOT want to do.) I find myself feeling overwhelmed a lot with all of the preparations to be made but we are slowly making progress which makes me feel so much better.
In closing, Rion had his first post treatment MRI today at 8:30 AM. It's hard not be nervous since he has not been on any sort of treatment for 2 months, there is that lingering thought in the back of our minds that Morton has already started to come back. But we try to just stay busy and ignore those pessimistic thoughts so they don't weigh us down. There is absolutely nothing we can do to control what is on the MRI so we will continue to pray for God to give us peace & comfort, whatever the outcome may be. I am not sure when we will get the results of this MRI, it will be sent to the local oncologists office & up to Duke and I'm assuming Duke will contact us if anything of significance shows up. In the mean time we will just keep on living and getting more and more excited about our son!
God bless everyone in this new year,
Emily & Rion
Rion for the most part has been doing really well. We have found that he still has the partial sensory seizures occasionally- specifically when he is tired, dehydrated or stressed. His grandmother passed away very unexpectedly in December and for a few days he was having multiple seizures every day. As things have gone "back to normal" and he has begun the grieving process, the seizures have all but stopped. We have decided (along with the doctors) to increase his anti-depressant medication to see if that will help how his body responds to stressful & emotional situations. I don't think I will ever get used to him having seizures or get over my fear that he is going to have another major seizure like the one that started this all. But for the most part he is happy & healthy and really trying to not let his condition dictate how he lives his life.
Speaking for back to normal, Rion is very glad to be back working. He is helping out at his cousin's antique mall right down the road from our house. It is a great situation because his schedule is flexible and it allows him be out & around people (and if you know Rion, you know he's a people person.) He is still seeing his local oncologist once a month for lab work & I'm assuming we will continue to visit the folks at Duke quarterly (and having local MRI's quarterly) so having a flexible schedule is important. (So is having someone that understands that Rion may have good & bad days and not get upset at him for it.) It is so nice for both of us to have him out of the house most of the day instead of him feeling isolated; I've hesitated to make plans for after work & on the weekends with my friends these past few months because I feel so bad that he was at home by himself most of time. Having something to do all day really takes a lot of stress off of both of us.
I am doing great as well. I am almost 24 weeks (6 months) pregnant and we found out in November that we are expecting a baby boy in April. To say that Rion is excited would be an under statement- he was literally speechless when the ultrasound technician revealed the sex to us. Now that the holidays are over we are focusing most of our spare time/energy on preparing for the baby. That currently involves finishing a room in our basement so that we can totally empty out & re-do the room that will be the nursery (it is currently used for storage & as an office type room.) I am blessed to have such a wonderful husband who has done 99% of the work finishing the room in the basement and all we lack is carpet to have the room completed (something he does NOT want to do.) I find myself feeling overwhelmed a lot with all of the preparations to be made but we are slowly making progress which makes me feel so much better.
In closing, Rion had his first post treatment MRI today at 8:30 AM. It's hard not be nervous since he has not been on any sort of treatment for 2 months, there is that lingering thought in the back of our minds that Morton has already started to come back. But we try to just stay busy and ignore those pessimistic thoughts so they don't weigh us down. There is absolutely nothing we can do to control what is on the MRI so we will continue to pray for God to give us peace & comfort, whatever the outcome may be. I am not sure when we will get the results of this MRI, it will be sent to the local oncologists office & up to Duke and I'm assuming Duke will contact us if anything of significance shows up. In the mean time we will just keep on living and getting more and more excited about our son!
God bless everyone in this new year,
Emily & Rion
Thursday, November 8, 2012
All.Done.With.Chemo!!!!!
Yay!!!! Rion's last dose of chemo was Tuesday night and Tuesday was by far the worst day. He vomited 2 times (including at the oncologists office which he had to rush to an hour late after we totally forgot about his appointment.) I was very proud of him though because even though he felt horrible he still went out & voted. I posted that little fact on FaceBook to try and "shame" others into voting that might have thought they had a good excuse not to.
Each day is better than the last; he ate a normal lunch & dinner yesterday and even felt like venturing out today. Tomorrow we have plans to go out for dinner for my birthday coming up next week and I was afraid we would have to cancel them. But it looks like we are all systems go!
Rion will continue to have blood work done on Tuesdays for the next 3 weeks at which time his counts should be rebounding and he will be able to stop going. I don't know what we're going to do with all this extra time?!? Not to mention the $25 co-pays we'll save. We thank God for our insurance and our other many blessings but this last year has been a real eye opener for how quickly medical expenses can add up (still haven't paid a dime to the folks at Athens Regional since they won't work with us...maybe they'll just write it off LOL)
Thank you all for continuing to follow along and support us throughout this journey. I am not sure what my posting schedule will look like now that treatment is on hold but I'm sure I'll be back from time to time to give updates. Especially around the next MRI at the end of December and if anything happens before then. I might write a "touchy feely" post around 11/21- the 1 year anniversary of Rion's first seizure- that is sure to be an emotional day for me/us.
Blessings,
Emily
Each day is better than the last; he ate a normal lunch & dinner yesterday and even felt like venturing out today. Tomorrow we have plans to go out for dinner for my birthday coming up next week and I was afraid we would have to cancel them. But it looks like we are all systems go!
Rion will continue to have blood work done on Tuesdays for the next 3 weeks at which time his counts should be rebounding and he will be able to stop going. I don't know what we're going to do with all this extra time?!? Not to mention the $25 co-pays we'll save. We thank God for our insurance and our other many blessings but this last year has been a real eye opener for how quickly medical expenses can add up (still haven't paid a dime to the folks at Athens Regional since they won't work with us...maybe they'll just write it off LOL)
Thank you all for continuing to follow along and support us throughout this journey. I am not sure what my posting schedule will look like now that treatment is on hold but I'm sure I'll be back from time to time to give updates. Especially around the next MRI at the end of December and if anything happens before then. I might write a "touchy feely" post around 11/21- the 1 year anniversary of Rion's first seizure- that is sure to be an emotional day for me/us.
Blessings,
Emily
Wednesday, October 31, 2012
Lots of good news
We are home & settled in from our trip to Duke and we have a lot of good news to share. So here it is:
Baby Henderson is due April 28,2013!!!
- Rion will be able to "take a break" (the neuro-oncologists exact words) from chemo after this last round which he will begin Friday. He will take the chemo for 5 days and get lab work done once a week for 4 weeks and then after that he can stop.
- He will continue to have MRI's every 2 months BUT they will be done locally & the disks sent up to Duke for review. We will not have to go back to Duke for 4 months!!
- His MRI was GREAT- "stable to improving" (same doctors exactly words) with no new areas of enhancement and decreased size of the re-sectioning cavity and fluid around the incision.
- We can expect to see improvements in Rion's memory & attention the longer he is off the chemo. Much of what I had read stated that the neurological side effects of chemo are permanent however the doctor said that with Rion's age she does not expect this to be the case. This is such a relief to us as we both find it frustrating how forgetful Rion is and how easily he is distracted when trying to complete a task. We will discuss these issues again in 4 months and if we are still concerned there is a neuro- psychiatrist Rion can meet with for an assessment and to develop a treatment plan
- And our last bit of good news isn't so much about our Duke trip but rather about life AFTER treatment...
Friday, October 26, 2012
Ready for Duke next week!
Next Tuesday (10/30/12) we will travel to Duke for Rion's *hopefully last for a while* MRI & neuro-oncologist appointments on the 31st. We are extremely optimistic about this trip- no seizures, his white blood cells & platelets are still doing fabulous & the last few MRI's have been progressively better. This trip feels like the conclusion to the past years worth of doubt, confusion, fear, education, hope & perseverance. We are more than ready to have Rion declared "DONE" with active treatment!
The game plan is for Rion to start his LAST round of chemo next Friday 11/2/12- 5 days on & then ??? off. The idea of not having to go to the doctor each week for blood work & not having to anticipate him being sick for a week out of the month is fabulous. It takes 4 phone alarms just to remember all the medication he has to take on "chemo days;" no more of that!
So please keep us in your prayers next Tuesday & Wednesday as we travel and meet with the doctors. While we want to be done with treatment, we want Rion to be declared healthy & stable more than anything!
Blessings,
Emily
The game plan is for Rion to start his LAST round of chemo next Friday 11/2/12- 5 days on & then ??? off. The idea of not having to go to the doctor each week for blood work & not having to anticipate him being sick for a week out of the month is fabulous. It takes 4 phone alarms just to remember all the medication he has to take on "chemo days;" no more of that!
So please keep us in your prayers next Tuesday & Wednesday as we travel and meet with the doctors. While we want to be done with treatment, we want Rion to be declared healthy & stable more than anything!
Blessings,
Emily
Thursday, October 11, 2012
Done with chemo 5/6
Rion is done with chemo as of Tuesday & seems to be doing better. This time the side effects hit harder & stronger- he started getting sick Monday morning & was sick Monday, Tuesday & Wednesday. When he woke up very early this morning feeling ill I convinced him to take a Phenergan which either worked or just knocked him out for a few more hours so he was too zombie-fied to get sick. Either way, I'll take it! His blood work as of Tuesday was still good (to be expected since he had just started 5 days earlier) and he will continue to go each Tuesday for blood work. In an ideal world his levels will start dropping in 2 weeks but be back up by the end of the month so he can take his last cycle starting November 2nd. In reality I am expecting levels to have trouble coming back up as they have with the last few rounds. Seeing as though the side effects did not decrease in response to the lowered dosage I am thinking the white blood cells & platelets (the 2 levels he has had so much trouble with) will probably suffer as well. Someone pointed out to me that the level of toxins from the chemo in his body have probably built up so much over time that any additional toxins will produce worse side effects than they would have in the beginning when we were starting with a "fresh" body. We are still happy that things haven't been any worse, he has been able to get out of bed every day and spend time with me & the puppy dogs; he has eaten at least some little something each day.
Tuesday, October 9, 2012
Sick Rion : (
After taking much longer than it should have to get the correct dosage of chemo, Rion finally received it in the mail and started it Friday. Unfortunately the nausea/vomiting & fatigue have hit harder & sooner than before- tonight is the last night of chemo but he has been sick for 2 days now. He went for blood work this morning and everything still looks good (as expected) but we anticipate white blood cells and platelets will start declining within the next week or so. I'm so ready for this to all be over. I'm pretty sure Rion's body is just worn out from fighting this poison and every time it gets harder and harder- this would explain why his levels go down further & stay down longer each time. I know chemo is a good thing- and his body is doing what it needs to do to fight off the cancer cells- but it doesn't make it any easier when he's woken up from a dead sleep to vomit : ( I just wish there was more I could do!
Wednesday, September 26, 2012
Full speed ahead
Rion's blood counts are finally up enough for us to start his next round of chemo -AND- they are letting us lower his dosage since he has been having such a hard time rebounding after each cycle. YAY ALL AROUND!
While we would ideally like to have him get 2 more rounds of the mega strength dose, we have to consider that it is taking him almost double the amount of time it should between treatments which is not good. So by lowering the dosage we can *hopefully* get both rounds in before we return to Duke at the end of next month (my fear is that if he still has more chemo to do they will make us come back again before we're cleared to officially stop the chemo & have most of his scans done down here until further notice.) I never in a million years thought I would be this excited to have Rion taking chemo but we're to the point that we are so over all of the doctors appointments; he goes once a week for blood work at the local oncologist and to Duke every 2 months- not to mention the countless e-mails & phone calls that are exchanged each week to keep everyone in the loop- and we are always planning our life around chemo weeks...which has been especially difficult since we don't know until the day his blood work is good which weeks will be chemo weeks.
We received some really, really good news yesterday. Every time we have an MRI at Duke they prepare a summary report of the MRI findings, specifically in comparison to his previous MRI. They note why he's having the MRI "30-year-old male status post resection of a left temporal oligo astrocytoma" and then they look at the re sectioning cavity (where the tumor used to be) and the surrounding areas (where new tumor is most likely to develop.) The one from August had 2 pieces of good news: 1) "Decreased conspicuity of nodular enhancement posterior to the resection cavity and decrease in extra axial fluid collection" and 2.) "No new area of enhancement." To my simple mind I take that to mean that the "iffy" spot we saw before is shrinking, there are no new "iffy" spots and he is continuing to heal from surgery. Could we ask for anything better?!? This kind of information just puts my mind at ease that we are on the right path and making the right decisions, although it might not always seem like it. I wish I was more faithful and didn't need this tangible evidence to reassure me but it would be a lie to say I don't. While thanking God for this amazing news I am also asking for Him to increase my faith and take away my doubts & fears that seem to creep up over time.
As always, thank you for all of your continued thoughts and prayers. We've had a good # of people ask us lately if we are going to still be planning some sort of organized benefit or fundraiser and we've officially decided to not move forward with that. There are so many reasons for our decision but the main one being that we feel like we (kinda. sorta. sometimes.) have a handle on things. Our finances are a mess but slowly they are becoming an organized mess (I have still yet to pay a dime to the hospital in Athens from Rion's initial trip there last year when this all started but they are completely unwilling to work with us so they will stay at the back of the line!) Most doctors/hospitals are understanding and willing to set up reasonable payment plans. Additionally we have applied for charity/co-pay assistance/pay-in-full discounts with everyone and been fairly successful at having the bills reduced or in some cases eliminated. I would estimate we still have around $17,000 in unpaid debts but that will still be there when Rion is able to work full time again and we can chip away at them a little more quickly. Something else I've had to accept over the past year is that I simply can not control this situation and I have to learn to react in the most positive, effective way when somethng is thrown at me. I have also taken my organizational skills to a previously unattained level having to keep up with everything! Not to say I don't occasionally let something slip through the cracks : )
Last I want to point out that while Rion looks and feels amazing, there are some parts of him that have been changed indefinitly. We had an appointment last weekend to set up wills & advance directives and we video recorded the session. While Rion was totally fine with that and knew ahead of time, the pressure of being on camera made it really hard for him to think and formulate answers. What we take for granted every time we open our mouths to verbalize a thought doesn't come automatically to Rion any longer and the more stressful the situation, the worse it is. For example, we noticied almost immediately after surgery that Rion had difficulty saying the blessing before dinner (especially with his eyes closed) and ordering at a restaurant. When he's in the spot light and has something very specific he wants to say is when he has the most trouble. It hurts me to watch him struggle but I'm so proud of him for not getting (too) frustrated and not giving up on himself. He is such an amazingly strong person and I continue to thank God for each and every day we have together because being married to him truly makes me a better person.
Here is a cute picture I snapped of Rion the other day when we were playing around. He decided to put Scooby's halloween costume on his head and tell me the frog was eating his brain. I'm not too sure about all that but I think it's adorable and shows how playful & funny Rion is all the time!
While we would ideally like to have him get 2 more rounds of the mega strength dose, we have to consider that it is taking him almost double the amount of time it should between treatments which is not good. So by lowering the dosage we can *hopefully* get both rounds in before we return to Duke at the end of next month (my fear is that if he still has more chemo to do they will make us come back again before we're cleared to officially stop the chemo & have most of his scans done down here until further notice.) I never in a million years thought I would be this excited to have Rion taking chemo but we're to the point that we are so over all of the doctors appointments; he goes once a week for blood work at the local oncologist and to Duke every 2 months- not to mention the countless e-mails & phone calls that are exchanged each week to keep everyone in the loop- and we are always planning our life around chemo weeks...which has been especially difficult since we don't know until the day his blood work is good which weeks will be chemo weeks.
We received some really, really good news yesterday. Every time we have an MRI at Duke they prepare a summary report of the MRI findings, specifically in comparison to his previous MRI. They note why he's having the MRI "30-year-old male status post resection of a left temporal oligo astrocytoma" and then they look at the re sectioning cavity (where the tumor used to be) and the surrounding areas (where new tumor is most likely to develop.) The one from August had 2 pieces of good news: 1) "Decreased conspicuity of nodular enhancement posterior to the resection cavity and decrease in extra axial fluid collection" and 2.) "No new area of enhancement." To my simple mind I take that to mean that the "iffy" spot we saw before is shrinking, there are no new "iffy" spots and he is continuing to heal from surgery. Could we ask for anything better?!? This kind of information just puts my mind at ease that we are on the right path and making the right decisions, although it might not always seem like it. I wish I was more faithful and didn't need this tangible evidence to reassure me but it would be a lie to say I don't. While thanking God for this amazing news I am also asking for Him to increase my faith and take away my doubts & fears that seem to creep up over time.
As always, thank you for all of your continued thoughts and prayers. We've had a good # of people ask us lately if we are going to still be planning some sort of organized benefit or fundraiser and we've officially decided to not move forward with that. There are so many reasons for our decision but the main one being that we feel like we (kinda. sorta. sometimes.) have a handle on things. Our finances are a mess but slowly they are becoming an organized mess (I have still yet to pay a dime to the hospital in Athens from Rion's initial trip there last year when this all started but they are completely unwilling to work with us so they will stay at the back of the line!) Most doctors/hospitals are understanding and willing to set up reasonable payment plans. Additionally we have applied for charity/co-pay assistance/pay-in-full discounts with everyone and been fairly successful at having the bills reduced or in some cases eliminated. I would estimate we still have around $17,000 in unpaid debts but that will still be there when Rion is able to work full time again and we can chip away at them a little more quickly. Something else I've had to accept over the past year is that I simply can not control this situation and I have to learn to react in the most positive, effective way when somethng is thrown at me. I have also taken my organizational skills to a previously unattained level having to keep up with everything! Not to say I don't occasionally let something slip through the cracks : )
Last I want to point out that while Rion looks and feels amazing, there are some parts of him that have been changed indefinitly. We had an appointment last weekend to set up wills & advance directives and we video recorded the session. While Rion was totally fine with that and knew ahead of time, the pressure of being on camera made it really hard for him to think and formulate answers. What we take for granted every time we open our mouths to verbalize a thought doesn't come automatically to Rion any longer and the more stressful the situation, the worse it is. For example, we noticied almost immediately after surgery that Rion had difficulty saying the blessing before dinner (especially with his eyes closed) and ordering at a restaurant. When he's in the spot light and has something very specific he wants to say is when he has the most trouble. It hurts me to watch him struggle but I'm so proud of him for not getting (too) frustrated and not giving up on himself. He is such an amazingly strong person and I continue to thank God for each and every day we have together because being married to him truly makes me a better person.
Here is a cute picture I snapped of Rion the other day when we were playing around. He decided to put Scooby's halloween costume on his head and tell me the frog was eating his brain. I'm not too sure about all that but I think it's adorable and shows how playful & funny Rion is all the time!
Tuesday, September 18, 2012
still no chemo
Today is 6 weeks since Rion started his last chemo dosage and after lab work today it's a no-go again for at least another week. His white blood cells are still very low- in fact his neutrophils are lower than they have ever been before. We have a call into Duke to see if Rion needs to get the booster injection they have discussed with us before. We would also like to lower the chemo dosage so Rion can finish the last 2 dosages in a reasonable amount of time- he has only had 2 dosages in the last 12 weeks with all of the waiting for his levels to come back up. I also can't help but think that it isn't good to keep lowering his white blood cells & platelets to the point that they are not rebounding as they should. But what do I know, I'm just the paranoid wife right?!?
So...nothing really new to report but I'll post another update when we hear back from Duke or after lab work next week.
Emily
So...nothing really new to report but I'll post another update when we hear back from Duke or after lab work next week.
Emily
Wednesday, August 29, 2012
Duke appointment 8/29/12
First of all THANK YOU to everyone for the prayers and well wishes today. We have truly felt your presence and it has given us strength to get through these past 2 days.
The appointment today was very good, better than we could have imagined. Yes, Rion is definitely having the partial sensory seizures again but it's not due to any of the causes we had speculated about. No swelling, no scar tissue, no tumor- the MRI was "stable" with no sign of change!! So...what is causing the seizures?? STRESS! Crazy, huh? But yeah, once you have a seizure you are per-disposed to having them again- they can be brought on by things as simple as lack of sleep, dehydration (which we are thinking played a part in Rion's most recent bout) as well as stress. Things have been pretty up & down these past few weeks and while Rion is a very laid back guy, his brain apparently didn't get the memo. But we thank God it wasn't any of the physical conditions that we has suspected. We are going to start searching for a psychologist that Rion can meet with to teach him some stress management skills as well as give him a non-biased sounding board to work through any stresses he wants help with. Along with therapy, it will be up to us (all of us) to make sure that we don't put too many expectations on him since feeling like he isn't "good enough" or "doing enough" seems to be a recurring theme. Rion is not the same person he was 9 months ago- he is not lazier or doesn't care as much, but doing even simple things takes so much out of him now because of the extra concentration and focus it takes. He just isn't able to take on as much as he could before and its hard to pick and choose when he wants to still go at the same (warped) speed as he always had.
The 2nd part of today's appointment was focused on how we are going to manage the new seizures. The increase in his Keppra to 3000 mg/day is working but the side effects are unacceptable. The fatigue & mental fog are not lifting as well as a general "off" feeling and an even harder time organizing and discussing his thoughts. So starting tomorrow we will begin gradually increasing his Vimpat, the adjunct seizure medication that was added in June and had successfully stopped all seizure activity until these break through seizures last week. Once that medication has been increased to 400 mg/day (is currently 200mg) then we will start weaning him back down on the Keppra to the 2000 mg/day he was on up until this past Saturday. The neuro-oncologist on call did not make a mistake by increasing his Keppra, Keppra is an amazing drug that has relatively few side effects and virtually no known drug interactions. The Vimpat on the other hand is a newer drug that isn't as well tolerated. But in our situation we feel that increasing the Vimpat is in Rion's best interest along with lowering the Keppra. It will take about 2 months total to make these changes to his medication which puts us right at our next appointment in October 31st where we will discuss with the doctor again how Rion is doing and make any additional changes as needed.
The last bit of (good) news- Rion should be all DONE with chemo in 2 months!! The oncologist said again today that he is doing as good as we could expect and there is no reason to continue on with treatment after he gets this 6 months under his belt. There is a chance that we might have to lower the dosage of the final two rounds because his platelets were down today lower than ever (52,000 & the previous record low was 60,000.) If they go below 20,000 Rion will possibly need a platelet infusion and will not be allowed to continue on the current chemo dosage. Additionally we need to watch his white blood cells and if they get below 1,000 (current low is 1700) then he will have to get a shot to boost his white blood cell production. Because of the compromised immune system (did not get the exact white blood cell # today but it's down from 2000 where it was last week) he is at a risk of a flair up of his shingles again so for now he will stay on the Acyclovir- the antiviral medication that he has been taking since the shingles started. We will also decide at our next appointment when he can stop taking that but it isn't harming anything and the complications from another shingles outbreak could be really bad.
So that's where we are now. To say we are relieved would be an understatement, Rion smiled today for the first time in a week and I am reminded again how wonderful and kind our God is if we remain faithful to him.
Emily
The appointment today was very good, better than we could have imagined. Yes, Rion is definitely having the partial sensory seizures again but it's not due to any of the causes we had speculated about. No swelling, no scar tissue, no tumor- the MRI was "stable" with no sign of change!! So...what is causing the seizures?? STRESS! Crazy, huh? But yeah, once you have a seizure you are per-disposed to having them again- they can be brought on by things as simple as lack of sleep, dehydration (which we are thinking played a part in Rion's most recent bout) as well as stress. Things have been pretty up & down these past few weeks and while Rion is a very laid back guy, his brain apparently didn't get the memo. But we thank God it wasn't any of the physical conditions that we has suspected. We are going to start searching for a psychologist that Rion can meet with to teach him some stress management skills as well as give him a non-biased sounding board to work through any stresses he wants help with. Along with therapy, it will be up to us (all of us) to make sure that we don't put too many expectations on him since feeling like he isn't "good enough" or "doing enough" seems to be a recurring theme. Rion is not the same person he was 9 months ago- he is not lazier or doesn't care as much, but doing even simple things takes so much out of him now because of the extra concentration and focus it takes. He just isn't able to take on as much as he could before and its hard to pick and choose when he wants to still go at the same (warped) speed as he always had.
The 2nd part of today's appointment was focused on how we are going to manage the new seizures. The increase in his Keppra to 3000 mg/day is working but the side effects are unacceptable. The fatigue & mental fog are not lifting as well as a general "off" feeling and an even harder time organizing and discussing his thoughts. So starting tomorrow we will begin gradually increasing his Vimpat, the adjunct seizure medication that was added in June and had successfully stopped all seizure activity until these break through seizures last week. Once that medication has been increased to 400 mg/day (is currently 200mg) then we will start weaning him back down on the Keppra to the 2000 mg/day he was on up until this past Saturday. The neuro-oncologist on call did not make a mistake by increasing his Keppra, Keppra is an amazing drug that has relatively few side effects and virtually no known drug interactions. The Vimpat on the other hand is a newer drug that isn't as well tolerated. But in our situation we feel that increasing the Vimpat is in Rion's best interest along with lowering the Keppra. It will take about 2 months total to make these changes to his medication which puts us right at our next appointment in October 31st where we will discuss with the doctor again how Rion is doing and make any additional changes as needed.
The last bit of (good) news- Rion should be all DONE with chemo in 2 months!! The oncologist said again today that he is doing as good as we could expect and there is no reason to continue on with treatment after he gets this 6 months under his belt. There is a chance that we might have to lower the dosage of the final two rounds because his platelets were down today lower than ever (52,000 & the previous record low was 60,000.) If they go below 20,000 Rion will possibly need a platelet infusion and will not be allowed to continue on the current chemo dosage. Additionally we need to watch his white blood cells and if they get below 1,000 (current low is 1700) then he will have to get a shot to boost his white blood cell production. Because of the compromised immune system (did not get the exact white blood cell # today but it's down from 2000 where it was last week) he is at a risk of a flair up of his shingles again so for now he will stay on the Acyclovir- the antiviral medication that he has been taking since the shingles started. We will also decide at our next appointment when he can stop taking that but it isn't harming anything and the complications from another shingles outbreak could be really bad.
So that's where we are now. To say we are relieved would be an understatement, Rion smiled today for the first time in a week and I am reminded again how wonderful and kind our God is if we remain faithful to him.
Emily
Tuesday, August 28, 2012
At Duke & return of partial seizures
What a crazy few days we've had. Rion had his blood work done last Tuesday and it was OK, down a little but that is to be expected. I didn't blog about it because it was pretty uneventful and I knew I'd be blogging this week about our trip to Duke.
Rion was doing really good until last Thursday when he started having partial seizures after 6 weeks of not having any. He didn't say anything to me about it until Friday when I got home from work because he was hoping they would stop. By then they were happening pretty frequently, every couple of hours. He took a good amount of his as needed seizure medication and was able to sleep soundly until 5 am Saturday morning. He was woken up by a seizure and within 45 minutes he had 3 of them. I couldn't just watch it happen any more so I called our local oncologist (following the instructions from Duke, we call the local doctors first with any problems and then call Duke if they are unable to help us.) The on call doctor was nice but he admitted he isn't a brain specialist and recommended we call our neurologist. Well we don't see them very much so I just skipped that step and called the neuro-oncologist on call at Duke. The good news is we got the seizures to stop, the bad new is that meant increasing his Keppra from 2000 mg/day to 3000 mg/day which is the maximum dosage. He started the higher dosage Saturday morning and only had a few seizures all day, by Sunday they had stopped completely. Unfortunately the side effects from increasing the Keppra are pretty severe. Rion is extremely fatigued, he is taking at least 1 nap a day and then sleeping at least 10 hours a night. The fatigue should subside over time but the mental side effects are what scares me. Rion has always been very positive & optimistic throughout this entire journey but I see his faith wavering now. Whether it be from the increase in Keppra or the seizures themselves, Rion describes the way he feels as "going crazy" or being "unable to collect his thoughts." It is slowly wearing him down and it worries me. While understandably apprehensive about tomorrow I am also so relived we don't have to wait any longer to get some answers about what is going on. Honestly if we hadn't had this trip planned already I would have brought him up here any ways. Something is definitely going on and the sooner we can get some answers the better.
So...the big question is: what happened to start causing these seizures? From my research I have come up with 3 plausible answers. First, and most UNlikely is that the tumor is already coming back. The neuro-oncologist I spoke with Saturday all but ruled that out since the MRI 2 months ago was clear. It is almost impossible for the tumor to come back that quickly & while actively taking chemo. My second theory is scar tissue from surgery has formed around the resectioning cavity. I am not sure what course of treatment would be taken to correct this problem but I couldn't imagine much could be done. My last theory is that Rion's brain has started to swell from the radiation treatment and the swelling is causing inter cranial pressure leading to seizures. As sick as it sounds this is what I hope will be the diagnosis. I am pretty sure they can prescribe steroids to reduce the inflammation and then back his Keppra back down. Of course those are just my thoughts and it could be something totally different. Either way, I just pray its something we can treat rather than just treating the symptoms.
So that brings us up to the present. We are sitting in a hotel room in Durham trying to relax enough to sleep tonight (something I have really been struggling with.) We will be at the hospital at 7:30 to start blood work & then on to MRI at 8:30 and the oncologist appointment at 10:30. Please pray for our nerves and the grace to accept whatever the diagnosis may be. I will try to update the blog as soon as I can. If you are on Facebook, feel free to send me a friend request as I often mention things on there before I have time to blog.
God bless!!!
Emily
Thursday, August 16, 2012
Sorry to be so neglectful!
Is neglectful even a word?
Anyway, we have just been really crazy busy and I haven't updated the blog in a loooooooong time.
Rion took his 4th round of chemo last week- Tuesday thru Saturday. He did ok while on the chemo but Sunday night it hit him really hard. He got confused and didn't take his anti-nausea medication after Sunday morning and once it was out of his system he was defenseless to the nausea/vomiting. It continued on into Monday and wasn't really until Tuesday that he started feeling better again and able to keep food/liquids down. I was really concerned about him Monday because he couldn't even keep water down and he got really fatigued being so ill. But after sleeping well Monday night he was in much better spirits (and hungry) Tuesday morning. Things have continued to improve steadily every day.
We are happy to report his shingles are all but cleared up! It looks like he might have some scarring that will hopefully fade over time. He is still taking the antiviral medication 2 times a day until we go up to Duke and they re-evaluate him.
Speaking of Duke, we are still on for our appointments on the 29th so we will travel up on the 28th as we normally do the day before. Please pray that Rion is able to get our Expedition fixed before then so we won't have to make the long drive cramped in my little car. Yes the gas mileage is much better in my car but both of us are more comfortable in the Expedition (and Rion has enjoyed napping just about ever trip up there!) We are anxious to get the MRI done and confirm that the chemo is working and the iffy spot continues to remain unimportant, or better yet, is shrinking. We are also hopeful that Duke will clear us to stop chemo after 6 months...that would only mean 2 to go!!
Next Tuesday is Rion's first blood work post chemo and we don't expect to see many if any changes. It seems like it takes closer to 3 or 4 weeks for his levels to start dropping. Maybe this time they won't though and he'll be able to take his next dosage on time in 4 weeks. He is ready to hurry up and get it over with, even if it means being sick as a dog for a few days. He had mentioned having Duke lower the dosage down after becoming so ill this time but I really think that if we stay on top of the anti-nausea medication he won't have to go through anything near as traumatic again.
God bless you all and thank you for the continued prayers!!
Emily & Rion
Anyway, we have just been really crazy busy and I haven't updated the blog in a loooooooong time.
Rion took his 4th round of chemo last week- Tuesday thru Saturday. He did ok while on the chemo but Sunday night it hit him really hard. He got confused and didn't take his anti-nausea medication after Sunday morning and once it was out of his system he was defenseless to the nausea/vomiting. It continued on into Monday and wasn't really until Tuesday that he started feeling better again and able to keep food/liquids down. I was really concerned about him Monday because he couldn't even keep water down and he got really fatigued being so ill. But after sleeping well Monday night he was in much better spirits (and hungry) Tuesday morning. Things have continued to improve steadily every day.
We are happy to report his shingles are all but cleared up! It looks like he might have some scarring that will hopefully fade over time. He is still taking the antiviral medication 2 times a day until we go up to Duke and they re-evaluate him.
Speaking of Duke, we are still on for our appointments on the 29th so we will travel up on the 28th as we normally do the day before. Please pray that Rion is able to get our Expedition fixed before then so we won't have to make the long drive cramped in my little car. Yes the gas mileage is much better in my car but both of us are more comfortable in the Expedition (and Rion has enjoyed napping just about ever trip up there!) We are anxious to get the MRI done and confirm that the chemo is working and the iffy spot continues to remain unimportant, or better yet, is shrinking. We are also hopeful that Duke will clear us to stop chemo after 6 months...that would only mean 2 to go!!
Next Tuesday is Rion's first blood work post chemo and we don't expect to see many if any changes. It seems like it takes closer to 3 or 4 weeks for his levels to start dropping. Maybe this time they won't though and he'll be able to take his next dosage on time in 4 weeks. He is ready to hurry up and get it over with, even if it means being sick as a dog for a few days. He had mentioned having Duke lower the dosage down after becoming so ill this time but I really think that if we stay on top of the anti-nausea medication he won't have to go through anything near as traumatic again.
God bless you all and thank you for the continued prayers!!
Emily & Rion
Tuesday, July 31, 2012
Going backwards?
No chemo again this week. Rion's white blood cells have gone down even further than they were last week and the risk of infection is too great to try and take another cycle right now. The local oncologist wants him to bring his medication with him next week so they can discuss lowering his dosage so he'll be able to take at least something instead of staying off chemo completely. Rion is going to call Duke today and relay all of this information and get their opinion.
The shingles continue to be painful but as long as Rion stays on top of it he can keep it from being unbearable. Right now that means taking the maximum amount of pain medication but if it's working, whatever. Of course we are rightfully concerned about him getting hooked on the stuff but they'll be plenty of time later to worry about that we he isn't in constant pain. The oncologist today gave him a few extra days worth of Acyclovir to take after the initial 10 days are up. We also found last night that calamine lotion helps as well as soaking in a bath of domeboro or using it to make compresses. The blisters continue to get bigger but some areas did seem to show signs of improvement this morning.
Hopefully this will clear up soon, the white blood cells will rebound and we'll be back on track to at least take some, any, dosage of chemo. I'm "grounding" Rion and doing all the grocery shopping, errand running to lessen his chances of coming in contact with any sickies. It's a miracle (thank you God) that we survived the trip to the ER on Sunday.
Blessings,
Emily
The shingles continue to be painful but as long as Rion stays on top of it he can keep it from being unbearable. Right now that means taking the maximum amount of pain medication but if it's working, whatever. Of course we are rightfully concerned about him getting hooked on the stuff but they'll be plenty of time later to worry about that we he isn't in constant pain. The oncologist today gave him a few extra days worth of Acyclovir to take after the initial 10 days are up. We also found last night that calamine lotion helps as well as soaking in a bath of domeboro or using it to make compresses. The blisters continue to get bigger but some areas did seem to show signs of improvement this morning.
Hopefully this will clear up soon, the white blood cells will rebound and we'll be back on track to at least take some, any, dosage of chemo. I'm "grounding" Rion and doing all the grocery shopping, errand running to lessen his chances of coming in contact with any sickies. It's a miracle (thank you God) that we survived the trip to the ER on Sunday.
Blessings,
Emily
Monday, July 30, 2012
Shingles
Guess where we got to spend our Sunday?!?!
Poor Rion has shingles : ( It's around the lower left side of his back, top of his left leg and wrapping around to the middle of his torso on the left side. I am going to put some pictures at the bottom but I'm putting them after a break where you'll have to click through to see them just in case anyone doesn't want to.
Hopefully because we caught it early it will not get much, if any, worse and he'll continue being able to deal with the pain. This all started last week when he was complaining about his left hip & leg being sore and we couldn't figure out what had caused it. Then on Friday morning he woke up with 3 big bumps that I thought were bug bites (I didn't see them until after he messed with them but he said they were filled with lots of fluid- which he proceeded to expel, naturally LOL) By Saturday morning he had a flat rash that went in spots from the middle of his back to the middle of his stomach on his left side. Saturday afternoon while swimming we realized the rash was raised and seemed to be spreading. We discussed going to the hospital Saturday night but it had been a really, really long day and we both wanted to sleep. Yesterday (Sunday) morning we woke up and there was no doubt in our minds we needed to do something about this- it was starting to hurt and the rash consisted of clusters of boils. Following the guidelines set up by Duke we called the local oncologists office and spoke with the oncologist on call who told us it sounded like shingles but she wanted us to immediately go and get it checked out (we were hoping to wait until tomorrow (Tuesday) when Rion already has an appointment scheduled with his oncologist for blood work.) This and Rion's best friend Phillip who said it sounded like shingles prompted us to go ahead and head to the ER.
It really wasn't a bad experience as far as weekend trips to the ER are concerned. We stopped and bought Rion a mask to wear so he would be less likely to pick up anything from all the sickies and once the nurses heard that he had cancer and was on chemo (about 15 minutes after getting there) we were whisked away to our own room. I can not say enough good things about Athens Regional Medical Center. That's where Rion was taken last year when he had the seizure and they were the ones to diagnose him with a brain tumor- in the exact same ER we sat together yesterday. It was a little upsetting for me to be back there where it all began but having Rion coherent and able to talk and keep my mind off of that made it not too bad. They gave him an infusion of acyclovir over the course of an hour and sent us home with an additional 10 days worth of anti-viral medication as well as some pain medication. Unfortunately Rion is having to take a lot of the pain medication because the rash is painful to the touch as well as leaving his leg/hip really sore. But we are just happy we caught it when we did and optimistic that by hitting it hard & fast he'll get over this quickly with relatively little pain.
I have no clue what this means for his chemo that we were hoping to start this week. Logic tells me they are going to put it off again, even if his counts are back up. We'll be confirming with Duke whatever the local oncologist recommends and hopefully coming to an agreement that everyone is happy with.
Thank you all for your continued prayers. We really, really had a great time with the Harris family at the reunion this past Saturday- love you guys and thank you from the bottom of my heart for being so loving & supportive!
Emily
Thursday, July 26, 2012
Chemo on hold again
We're playing the wait and see game again in regards to Rion's next round of chemo that was supposed to start last night. When he went to the doctor Friday for his last blood work his platelets were only at 60,000 (the lowest they had dropped previously was 70,000 and that was at the very end of his concurrent chemo & radiation treatment.) In addition his neutrophil (type of white blood cells- read more about them here) are lower than they have been before and even though his white blood cells as a whole are ok, we don't want the neutrophil to go any lower. Rion e-mailed his blood work to Duke last Friday and they called him Monday & told him to go back Tuesday to get it checked again because they really want his platelets to be at at least 100,000 before taking any more chemo. Well as of Tuesday they are only up 1,000 to 61,000. So...no chemo for right now. Rion will go back next Tuesday to have blood work done again and fingers crossed everything will be back up. We are both ready to get this over and done with and with only 3 rounds to go it feels soooooooo close! Plus we had really wanted to get 2 rounds in before Duke next month (appointment on the 28th) so there would only be 1 more cycle to finish before the 6 months would be up. There is also that persistent nagging suspicion that every time we delay chemo we are letting the tumor grow back. Highly unlikely but it's hard not to feel that way.
We should have known his platelets were low because he has a lot of unexplained bruising on his legs. He has also been more tired than normal but we thought that was because he has been so much busier and dealing with the horrible heat/humidity (might break another record high again today for my non-local readers and the heat index will be over 100F.) Rion was able to get a handicapped parking tag to minimize the amount of walking out in the sun he has to do when he runs errands. The days he is taking chemo it is especially hard on him to be out and about but he doesn't want to feel like he is stuck at home. The front row parking is kinda nice but I feel guilty "enjoying" this perk, like it's some how wrong. I don't know, Rion says I'm crazy (which we already knew.)
Rion is feeling really good & upbeat, going about life as normal. I am pretty much doing the same. I do notice that we're starting to settle back into our old ways of acting like a "normal" married couple instead of one that just received devastating news. We've been arguing about stupid stuff from time to time but now I feel overwhelming guilt when it happens- like I am just asking for something to go wrong and make me really regret being anything but a stellar wife. I have noticed this happening more and more lately as we move out of the initial shock phase and into the new normal lives where treatment isn't the main focus. The bills can no longer be ignored and it's time to quit neglecting everything else in life that must be dealt with. Everyone continues to tell me what am amazing and wonderful wife I am and how lucky Rion is to have me but all I see are my flaws and how I still criticize and refuse to give in on the things we don't see eye to eye about. My stubborn side seems to be winning against my protective/nurturing side! I guess it's all about balance and now more than ever remembering to bite my tongue and not lash out when things upset me. Not to make Rion seem like a perfect angel but he hardly ever gets upset with me and that just makes me feel more rotten for having a temper like I do.
So...if anyone else stumbles upon this and happens to be going through something similar just know that you're not alone...and I'd love to hear from you since I haven't come across anyone in a similar situation. Getting through the devastating part when we clung together and to our faith was almost easier than trying to figure out where to go from here.
One last piece of (good) news- 2-3 months after finishing the paper work with Merck, as of this week they have finally paid 100% of Rion's chemo cost (was costing us $100 a cycle in addition to the initial $480) AND we are getting reimbursed for everything we have paid out of pocket for chemo up until this point. That is HUGE because it will allow us to pay off the credit card within the next month or 2 and be credit card debt free for the first time in a year!!! (I LOATHE credit card debt.)
Speaking of which, does anyone have experience working with a debt consolidation company??? I am having trouble keeping track of the 12 or so outstanding medical balances that we owe and I've missed a few payments here & there. It would be so much easier if we could just make 1 payment every month and have someone else divide it up for us for...but i don't want to pay interest. Is that even possible?? I feel like I am going to be an expert in so many different areas that I didn't have a clue about 8 months ago- lucky me right?!
This has gone on long enough. I'll check back soon to let everyone know when we start chemo again so we can all pray for minimal side effects...it worked last time which is why we're so gung-ho to get at it again and get it over with.
Emily
We should have known his platelets were low because he has a lot of unexplained bruising on his legs. He has also been more tired than normal but we thought that was because he has been so much busier and dealing with the horrible heat/humidity (might break another record high again today for my non-local readers and the heat index will be over 100F.) Rion was able to get a handicapped parking tag to minimize the amount of walking out in the sun he has to do when he runs errands. The days he is taking chemo it is especially hard on him to be out and about but he doesn't want to feel like he is stuck at home. The front row parking is kinda nice but I feel guilty "enjoying" this perk, like it's some how wrong. I don't know, Rion says I'm crazy (which we already knew.)
Rion is feeling really good & upbeat, going about life as normal. I am pretty much doing the same. I do notice that we're starting to settle back into our old ways of acting like a "normal" married couple instead of one that just received devastating news. We've been arguing about stupid stuff from time to time but now I feel overwhelming guilt when it happens- like I am just asking for something to go wrong and make me really regret being anything but a stellar wife. I have noticed this happening more and more lately as we move out of the initial shock phase and into the new normal lives where treatment isn't the main focus. The bills can no longer be ignored and it's time to quit neglecting everything else in life that must be dealt with. Everyone continues to tell me what am amazing and wonderful wife I am and how lucky Rion is to have me but all I see are my flaws and how I still criticize and refuse to give in on the things we don't see eye to eye about. My stubborn side seems to be winning against my protective/nurturing side! I guess it's all about balance and now more than ever remembering to bite my tongue and not lash out when things upset me. Not to make Rion seem like a perfect angel but he hardly ever gets upset with me and that just makes me feel more rotten for having a temper like I do.
So...if anyone else stumbles upon this and happens to be going through something similar just know that you're not alone...and I'd love to hear from you since I haven't come across anyone in a similar situation. Getting through the devastating part when we clung together and to our faith was almost easier than trying to figure out where to go from here.
One last piece of (good) news- 2-3 months after finishing the paper work with Merck, as of this week they have finally paid 100% of Rion's chemo cost (was costing us $100 a cycle in addition to the initial $480) AND we are getting reimbursed for everything we have paid out of pocket for chemo up until this point. That is HUGE because it will allow us to pay off the credit card within the next month or 2 and be credit card debt free for the first time in a year!!! (I LOATHE credit card debt.)
Speaking of which, does anyone have experience working with a debt consolidation company??? I am having trouble keeping track of the 12 or so outstanding medical balances that we owe and I've missed a few payments here & there. It would be so much easier if we could just make 1 payment every month and have someone else divide it up for us for...but i don't want to pay interest. Is that even possible?? I feel like I am going to be an expert in so many different areas that I didn't have a clue about 8 months ago- lucky me right?!
This has gone on long enough. I'll check back soon to let everyone know when we start chemo again so we can all pray for minimal side effects...it worked last time which is why we're so gung-ho to get at it again and get it over with.
Emily
Thursday, July 19, 2012
Blood work & life as normal
Man, I feel like I am really letting this blog go! There just isn't really anything new to discuss on a day to day basis or even a week to week basis. I did forget to post after Rion went to the doctor last Friday for his blood work- everything was great- better than great actually. His white blood cells are UP from where they were when we were at Duke the day he started his last round of chemo. His platelets are totally fine, above the normal range for a chemo patient. His energy levels are soaring (most of the time) and his appetite is doing well. He still struggles with not being hungry very much but when we make him eats he usually ends up eating a lot. We have notice that Rion eats a lot slower than he used to- no idea what is causing this. He doesn't seem to be eating more just taking more time. Not that there is any problem with it, just an observation.
He starts round 4 next Wednesday and we pray, pray, pray that it goes just as well as this round has. We'll have time to squeeze in 1 more round before we go to Duke next month for the big important appointment to decide if we stop chemo at 6 rounds or continue on with 12. I simply can not even think about that appointment without getting super nervous. I have an obvious love/hate relationship with Duke University Hospital and more specifically the MRI machine(s.)
Things are otherwise going along swimmingly over here. We are definitely settling back into a groove- work, social life, household chores, etc. We bicker and argue occasionally like any other couple and we also cuddle and hug way more than we used to. I still have guilt with taking time to go do something by myself because I want to spend every possible second together, it's like we're newly weds all over again (except for the bickering/arguing LOL) I would say we have done a good job of accepting the diagnosis and moving on. Except for the bald head and handicapped parking tag (that's new as of last week too) you wouldn't know there is anything wrong with Rion. Sure he has his good days and bad, feeling especially tired and very occasionally getting sick, but don't we all? We know it could be so much worse and we are thankful for all of our days together, even the bad ones.
That's all folks!
Emily
P.S For the Harris family members that read, we are planning on coming to the reunion next Saturday along with Andrew!! We are really looking forward to seeing everyone and being able to thank y'all in person for all of the love and support you've shown us.
He starts round 4 next Wednesday and we pray, pray, pray that it goes just as well as this round has. We'll have time to squeeze in 1 more round before we go to Duke next month for the big important appointment to decide if we stop chemo at 6 rounds or continue on with 12. I simply can not even think about that appointment without getting super nervous. I have an obvious love/hate relationship with Duke University Hospital and more specifically the MRI machine(s.)
Things are otherwise going along swimmingly over here. We are definitely settling back into a groove- work, social life, household chores, etc. We bicker and argue occasionally like any other couple and we also cuddle and hug way more than we used to. I still have guilt with taking time to go do something by myself because I want to spend every possible second together, it's like we're newly weds all over again (except for the bickering/arguing LOL) I would say we have done a good job of accepting the diagnosis and moving on. Except for the bald head and handicapped parking tag (that's new as of last week too) you wouldn't know there is anything wrong with Rion. Sure he has his good days and bad, feeling especially tired and very occasionally getting sick, but don't we all? We know it could be so much worse and we are thankful for all of our days together, even the bad ones.
That's all folks!
Emily
P.S For the Harris family members that read, we are planning on coming to the reunion next Saturday along with Andrew!! We are really looking forward to seeing everyone and being able to thank y'all in person for all of the love and support you've shown us.
Thursday, July 5, 2012
1st chemo, higher dosage & update on new medication
Rion's last dose of chemo was Sunday 7/1 & we think he did really well considering the increase in dosage. His 1st blood work is next Friday, July 13th, so we won't know for sure how his blood counts are until then but he is feeling fine the majority of the time. He was only sick 3 times- 2 times Saturday evening/night & Sunday afternoon. I think Saturday was a combination of chemo & being out at the pool all day in the hot, hot sun...it was a looooooong day that would have worn anyone out regardless of whether or not they are taking chemo! Sunday's vomiting was scary because it happened immediately after he had one of his partial seizures. He said he didn't feel any differently and he thinks there isn't a correlation between the two, but as always it made me nervous especially to see the symptoms combined. Sometimes I look at Rion and it just kills me that I can never know exactly how he feels, it must be so scary to never know when you are going to start feeling off and knowing that there is a possibility that it could turn into a full blown seizure. I hope & pray it doesn't because that was such a traumatic experience for both of us before.
Speaking of seizures Rion is doing well tolerating the Vimpat (the adjunct seizure medication that he started last week.) So far no major side effects- just a little dizziness that goes away with a few hours of taking it. He is moving up to 200 mg from 100 mg today so we will watch & make sure nothing changes. Last Sunday was the last time he has had any sort of possible seizure activity and i'm hopeful that it will be the last for good. I'm so glad that God has given us the knowledge to credit these medications which allow us to leave relatively normal lives. Rion is driving & working & over all feeling good even though he has seizures and is undergoing chemotherapy; it wasn't that long ago that both situations would have left a persons body feeling absolutely ravaged and unable to function. I also thank God for allowing Rion to respond so well to, and tolerate, treatment like he does.
That's about all we have going on as of now. I thought I'd share a cute picture of Rion holding my mom's new kitten (appropriately nick named Itty Bitty Kitty;) Rion LOVES animals and it's so darn cute to see him with anything cute & cuddly : )
Speaking of seizures Rion is doing well tolerating the Vimpat (the adjunct seizure medication that he started last week.) So far no major side effects- just a little dizziness that goes away with a few hours of taking it. He is moving up to 200 mg from 100 mg today so we will watch & make sure nothing changes. Last Sunday was the last time he has had any sort of possible seizure activity and i'm hopeful that it will be the last for good. I'm so glad that God has given us the knowledge to credit these medications which allow us to leave relatively normal lives. Rion is driving & working & over all feeling good even though he has seizures and is undergoing chemotherapy; it wasn't that long ago that both situations would have left a persons body feeling absolutely ravaged and unable to function. I also thank God for allowing Rion to respond so well to, and tolerate, treatment like he does.
That's about all we have going on as of now. I thought I'd share a cute picture of Rion holding my mom's new kitten (appropriately nick named Itty Bitty Kitty;) Rion LOVES animals and it's so darn cute to see him with anything cute & cuddly : )
Friday, June 29, 2012
Recap from Duke
I know that I should have posted earlier but there was A LOT of information thrown at us this week and every time I tried to start this post I would get overwhelmed with everything I wanted to share and how much I wanted to share. So...here's what I've got for now and I might add onto this post as we think about things more and make any subsequent decisions.
1.) The overall tone of the meeting was positive and encouraging. The MRI was categorized again as "stable to improving." There is nothing new since April & the area around the resectioning cavity that was highlighed before continues to shrink. Unfortunately there is something on the MRI that shouldn't be there- they don't know what it is and it's too small to remove or biopsy. This is actually the MRI from April but the one from June was so similar I couldn't tell which was which (also I forgot to get a copy of the one from June so this will have to do.) I know this looks tiny and it is small but there is another angle that shows it better and it looks like a miniture version of Morton. It could be swelling from radiation/surgery still, it could be scar tissue, it could be tumor, we don't know we just have to watch it and hope it doesn't get any bigger.
1.) The overall tone of the meeting was positive and encouraging. The MRI was categorized again as "stable to improving." There is nothing new since April & the area around the resectioning cavity that was highlighed before continues to shrink. Unfortunately there is something on the MRI that shouldn't be there- they don't know what it is and it's too small to remove or biopsy. This is actually the MRI from April but the one from June was so similar I couldn't tell which was which (also I forgot to get a copy of the one from June so this will have to do.) I know this looks tiny and it is small but there is another angle that shows it better and it looks like a miniture version of Morton. It could be swelling from radiation/surgery still, it could be scar tissue, it could be tumor, we don't know we just have to watch it and hope it doesn't get any bigger.
2.) The doctors confirmed that Rion is still having seizures- the "clicking" he hears in his head and the episodes that we have been calling panic attacks (Rion describes it as his thoughts racing, his heart speeding up & smelling a distinct smell of something that isn't really there) are both partial seizures. They have put him on Vimpat in addition to his Keppra to try & stop these seizures. Similar to the Keppra it is a fairly strong medication and has to be gradually increased and can not be stopped abruptly. The side effects are similar- fatigue, dizziness, nausea & suicidal behavior but since Rion has tolerated the Keppra so well we assume this will work just fine. In case you are wondering (as I was) why not just increase his Keppra, we were told that the next higher dosage (3000 mg/day) is likely to cause debilitation fatigue and clearly we don't want that. So we will try the new medication and hopefully get the seizures to totally stop. Rion wasn't told to quit driving but I still worry about him driving, especially if he has a "clicking seizure" because he has a really hard time concentrating on anything else when that happens. Luckily this hasn't happened yet and maybe it never will!
3.) His blood work was good enough to go ahead and start the round of chemo he missed a few weeks ago. He started Wednesday & so far so good. They added a 3rd medication for nausea/vomiting to try & prevent any of the spontaneous vomiting episodes Rion has experienced with the last 2 treatments. He is taking the higher dosage of chemo (375 mg vs 280 mg.)
I know I have mentioned here before that Rion would be on this chemo regiment (5 days on/23 days off) for a total of 12 cycles (12 months) but we are going to possibly change that to only 6 months- 4 more cycles including this one. I have mixed feelings about this- it would be wonderful to have Rion done sooner especially since he had been feeling so good with the extra 10 day off chemo. I can honestly say he has been acting more like himself the past few weeks than he has since his initial seizure last November. He is happy & active & just so full of life- I know it will be great when he is DONE with chemo and able to really resume life without trying to plan it around certain times of the month when he is more likely to be sick. But on the other hand I hate to feel like we aren't doing anything to prevent recurrence. The doctors assured me that there is no hard evidence to support that 1 year of chemo is any better than 6 months with the type of tumor that Rion has. In brain tumor talk there is a lot of emphasis on chromosomes 1P & 19Q- there is an inverse relationship between having these chromosomes & response to chemotherapy treatment ie if you don't have these chromosomes the chemo is more likely to be effective than if you do have them. This week we learned that in Rion's case he has a partial loss. Also, his tumor is composed of 2 different types of cells- one of which tends to respond more favorably to treatment than the other. Wikipedia has some good basic information- read here.
Our game plan for now is to get a fewmonths under out belt of the higher dosage chemo & go back to Duke at the end of August for another MRI & decide if we are going to finish chemo at 6 months or 12. I am already nervous about that trip because so much is riding on it! In the mean time we are going to have lab work done weekly instead of towards the end of each chemo cycle to stay on top of Rion's white blood cell count & platelets since we have seen them adversly affected at lower doses of chemo. If white blood cells get too low there is an injection they can give him to boost production of white blood cells & get them back up to a safe level. If his platelets get too low then he will have to get a blood transfusion to bring them back up. Even with the lowest his white blood cells & platelets have gone, they have never been to these dangerous levels before so we are praying they don't drop too much. But at least if they do we have a solution that we are both comfortable with.
That's all I got for y'all today. We walked away from the appointment feeling pretty good- I tend to focus on the negative but I'm really trying to just follow the doctors advice and live life "as normally as possible and not let this impact and decisions about our lives or our future."
Blessings,
Emily
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