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
Thursday, November 8, 2012
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
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