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
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