Sunday, January 29, 2012
Meet the Family
I thought it might be nice to include a family picture so all of you praying that haven't met us personally would at least have faces to put with names.
On the hospital bed is Rion (of course) I am in the purple. From left to right behind me is Rion's older brother Jay, his mom Dana, his twin brother Dave, dad Al, and best friend Phillip.
Out of the hospital
Oops! I forgot to give an update yesterday and let everyone know that Rion was released from the hospital around noon. We had no trouble of getting him here to the hotel suite we will be staying in for the next few days. Once he was all settled in, he was able to FINALLY get some good rest. His appetite is still fantastic and he was even up for visiting with some family who lives in NC and came to see him yesterday! After running around like a crazy person I was able to fill all of his prescriptions (he's on 9 medication I think) and I've started a chart to keep up with everything. By God's grace (and modern medicine) he's not going to get as much as a cold until the incision is fully healed. I checked on him at 6:00am (med time) and he said he was in no pain and had slept really good...he hasn't had any pain meds since yesterday evening! I'm so proud of how position Rion is being, he doesn't argue or complain when we tell him to eat, walk around, bath, take meds, etc, he just says "ok" and does it.
I imagine life for the next few days will be kinda boring but each day that I get to spend with Rion is a blessing to me : ) We're working on tapering him off his steroids, keeping his pain under control, watching his incision to make sure the drainage stops and gradually increasing his exercise and movements which will facilitate quicker healing. Over all I couldn't ask to be in a better place right now!
I'll (try) to let everyone know if anything else comes up. I am anxious to get the full pathology report back early this week, maybe even as early as tomorrow. However I already have a peace inside that leads me to believe there aren't going to be any negative surprises there. Once we have pathology and OK from the doc to head home that's exactly what we'll be doing. The hotel we're staying at is super nice but I'm ready for my bed and my doggies!
With God's Love,
Emily
I imagine life for the next few days will be kinda boring but each day that I get to spend with Rion is a blessing to me : ) We're working on tapering him off his steroids, keeping his pain under control, watching his incision to make sure the drainage stops and gradually increasing his exercise and movements which will facilitate quicker healing. Over all I couldn't ask to be in a better place right now!
I'll (try) to let everyone know if anything else comes up. I am anxious to get the full pathology report back early this week, maybe even as early as tomorrow. However I already have a peace inside that leads me to believe there aren't going to be any negative surprises there. Once we have pathology and OK from the doc to head home that's exactly what we'll be doing. The hotel we're staying at is super nice but I'm ready for my bed and my doggies!
With God's Love,
Emily
Saturday, January 28, 2012
Warning: Very Graphic Image
They have removed most of the dressing from Rion's incision and he wanted me to share a picture of it with everyone. Rion also says to "bring it" if you think you have a better scar than he does!! (Glad to see his sense of humor was not effected LOL)
The image is pretty graphic so I am putting in a jump break just like I did with his MRI photos.
Love,
Emily & Rion
The image is pretty graphic so I am putting in a jump break just like I did with his MRI photos.
Love,
Emily & Rion
Friday, January 27, 2012
Last night in the hospital (?)
Sorry but I just realized I didn't update earlier when Rion was moved out of ICU...that was right around the time I had to call AAA because my car wouldn't start in the parking lot! 1 car battery later and we're back on track.
Rion is doing really, really good. Better than I could have imagined in 1000 years. He ate all his dinner last night and would have eaten breakfast this morning if they had brought him anything that he likes (an egg and cheese omelet with onions doesn't cut it when you don't like cheesy eggs or onions!) But I brought him a pizza for lunch of which he ate half and for dinner tonight he had baked chicken, lentil soup, broccoli and salad, Oh my! He doesn't eat that good when it hasn't been only 24 hours since brain surgery! I am just amazed at how he has kept his appetite through all of this. Rion is usually the type to quit eating when he feels bad so I can't help but feel good when I see him eating like normal.
The word going around is that because he is eating so well and moving around (just did 1/18 of a mile walking around the neuroscience ward) they are possibly going to discharge him tomorrow. That would be so great if we could get him back to the hotel suite we have booked and let him start relaxing in a real bed without being woken up every 2 hours. The nurses here have been fantastic but they are doing their due-diligents by checking on him constantly. As one of the doctors told us earlier, the I in ICU doesn't stand for intermittent. We are praying for pain control during the night and a release tomorrow. We'll still have to stay in Durham for a few days but at least he won't be here where it's impossible to get any good sleep.
Thanks again to all my prayer warriors and our loving friends and family- God Bless!
Emily & Rion
Rion is doing really, really good. Better than I could have imagined in 1000 years. He ate all his dinner last night and would have eaten breakfast this morning if they had brought him anything that he likes (an egg and cheese omelet with onions doesn't cut it when you don't like cheesy eggs or onions!) But I brought him a pizza for lunch of which he ate half and for dinner tonight he had baked chicken, lentil soup, broccoli and salad, Oh my! He doesn't eat that good when it hasn't been only 24 hours since brain surgery! I am just amazed at how he has kept his appetite through all of this. Rion is usually the type to quit eating when he feels bad so I can't help but feel good when I see him eating like normal.
The word going around is that because he is eating so well and moving around (just did 1/18 of a mile walking around the neuroscience ward) they are possibly going to discharge him tomorrow. That would be so great if we could get him back to the hotel suite we have booked and let him start relaxing in a real bed without being woken up every 2 hours. The nurses here have been fantastic but they are doing their due-diligents by checking on him constantly. As one of the doctors told us earlier, the I in ICU doesn't stand for intermittent. We are praying for pain control during the night and a release tomorrow. We'll still have to stay in Durham for a few days but at least he won't be here where it's impossible to get any good sleep.
Thanks again to all my prayer warriors and our loving friends and family- God Bless!
Emily & Rion
doing good!
Saw Rion this morning and he is doing so good! He is having a little pain but the nurses are doing a great job of managing it. They just gave him enough meds to put him to sleep (which he really, really needed.) He has already eaten breakfast today and was in good spirits when I saw him earlier. The nurses all say he is doing wonderful and will be moved out of ICU once a bed becomes available.
recovery
Thanks everyone for the faithful prayers yesterday- our God is so awesome and I'm glad that yesterday wasn't Rion's day to be called home by the lord.
I just spoke with Rion's nurse over night and he said Rion is "rock solid." He didn't get a lot of sleep because he was in some pain but of course that was to be expected and that other wise he was great! I was supposed to sleep in to 7:30 (made it to 6:30) but visitation doesn't start until 8:30, I am going to have a nice long hot shower and be there to see him then. It was hard to leave and sleep in a hotel last night but I feel a million times better and I know i'll be better able to take care of Rion if I also take care of myself (seems logical but I have a hard time with that one!!)
I'll update and let everyone know when Rion is moved out of ICU today and anything else pertinent that comes up.
Thank you again and hallelujah! Our God is good!!
Emily
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Thursday, January 26, 2012
surgery has started
Just got paged, surgery started approximately 1:15, the best estimate we have for the time frame is 3 hours but it could take much longer. I'll update as I get more info
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Rion is out of surgery and the surgeon says he did great! The preliminary biopsy indicates he has a low grade glioma (best case scenerio) but we'll have the final word from pathology in a few days. We are waiting for him to be moved to ICU where we can see him but as of now nothing but good news. Praise God!!
surgery update
They just took Rion back to start.. I will update once we know more.
4:00- Dr paged us to say they are done with surgery and closing Rion back up. So far so good still. Praise God!!
Pre-op
Rion was just taken back into the pre-operation area. We should be able to go back 2 at a time in about 10 mins up until they are ready to take him in the ER
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Wednesday, January 25, 2012
Surgery info for tomorrow ***updated
We've made it safely to Duke and through all the pre-op testing and are relaxing in our hospital room. Rion will start receiving fluids and steroids this evening and then surgery will be at 7:30 tomorrow morning. He will go from surgery to the ICU where he will stay tomorrow night. Friday he will be moved to a regular room and he will be discharged Saturday or Sunday if everything goes according to plan.
We have a lot of family on their way here so I am going to keep it short and sweet today.
God Bless,
Emily CHANGE IN PLANS- SURGERY WILL BE SOME TIME TOMORROW AFTERNOON. THEY WANT RION'S SURGERY TO BE THE 2ND OF THE DAY SO THEY AREN'T RUSHED. WE WILL NOT HAVE AN EXACT TIME BUT I WILL UPDATE ONCE HE GOES INTO PRE OP TOMORROW
We have a lot of family on their way here so I am going to keep it short and sweet today.
God Bless,
Emily CHANGE IN PLANS- SURGERY WILL BE SOME TIME TOMORROW AFTERNOON. THEY WANT RION'S SURGERY TO BE THE 2ND OF THE DAY SO THEY AREN'T RUSHED. WE WILL NOT HAVE AN EXACT TIME BUT I WILL UPDATE ONCE HE GOES INTO PRE OP TOMORROW
Monday, January 23, 2012
Friday, January 20, 2012
Reflections
I like to countdown and up to events.
Every year Rion gets monthly, weekly, daily updates regarding the amount of time until our next anniversary, birthdays, holidays, vacations, etc. I'm sure he finds it annoying but it's just how my brain is wired- I am constantly aware of how much physical time is left until the next important event(s.) (I also do not possess the filter which allows me to determine which thoughts of mine are actually entertaining/relevant; Rion has the task of not only listening to me ramble, but also decide if what I'm saying is at all important enough to comment on!)
For instance, tomorrow is 2 months since Rion's seizure/ discovery of Morton and yesterday was exactly 1 week prior to surgery. To say we are emotional would be an understatement, we are on a roller coaster ride of ever changing feelings- from fear and anger to acceptance and sometimes even contentment, this is our lot in life and we are having to lean on a daily basis what the "new life" is like. One thing that blows my mind is how much deeper my emotions and opinions are these days, this is directly in alignment with the realization of what my true priorities in life are. Rion thinks it's funny that I no longer have to make the bed each day before I leave or clean the dishes up before going to bed, but I sure as heck don't miss an opportunity to tell him how much I love him or snuggle up on the couch! What used to seem so important no longer matters a bit to me and things I used to slack on, like not going to bed mad or always saying I love you before leaving, now mean more to me than being on time or getting a full nights sleep.
In a way I've appreciated these past 2 months and the opportunity to show Rion how much I truly love him and care about him before he undergoes this super scary surgery (and we finally get the biopsy results and must decide what to do next.) The waiting as been excruciating for both of us but the time we have spent together is invaluable. It has also showed us who are true friends are and made us grateful for the genuinely good people in our lives. It would be a lie to say everyone has responded to the diagnosis as we would have liked- people we thought were good friends have disappeared or become visibly uncomfortable when we told them about Morton, a few unreturned phone calls later and it's clear that they can't, or don't want to, be a part of our lives during this crucial time. While it was hard to understand at first, I have come to the realization that we are blessed with the best friends and family anyone could ask for. Relatives we hardly spoke to have become frequent contacts and friends we hadn't spent time with in years are coming forward left and right to do things for us we would have never even thought to ask for. I wish there was a way to make everyone understand how much this means to us because thank you just doesn't seem like enough. Both Rion and I hope that we are able to return the favor one day so you can all feel as blessed by us as we have been by you!
Last, I am so glad that both Rion and I have both chosen to cling to God during this time of need instead of turning away from Him. I honestly couldn't imagine it going any other way but just thinking about the turmoil and frustration it would cause if we weren't on the same page spiritually is overwhelmingly painful. We are both trying to use this as an opportunity to deepen our personal relationship with God & our trust that He is holding us in his hand even when it feels we are all alone. While I firmly believe God doesn't give us more than we can handle, I know that the upcoming days, weeks & months might seem unbearable. I have enjoyed praying more together and hope to start doing a daily devotional for cancer patients once Rion has recovered enough from surgery.
Thank you again to everyone for all of your thoughts, prayers, cards, calls, texts and everything else you have done to help us feel the love that you have for us. We are looking forward to the last few days of spending with family and friends until we leave Tuesday for North Carolina. I probably won't update the blog again until we are in NC and let everyone know how Rion's pre-op stuff goes on Wednesday. Please continue to pray for peace and calm nerves as well as safe travel for us and all of the family coming with us.
Love in Christ,
Emily & Rion
Every year Rion gets monthly, weekly, daily updates regarding the amount of time until our next anniversary, birthdays, holidays, vacations, etc. I'm sure he finds it annoying but it's just how my brain is wired- I am constantly aware of how much physical time is left until the next important event(s.) (I also do not possess the filter which allows me to determine which thoughts of mine are actually entertaining/relevant; Rion has the task of not only listening to me ramble, but also decide if what I'm saying is at all important enough to comment on!)
For instance, tomorrow is 2 months since Rion's seizure/ discovery of Morton and yesterday was exactly 1 week prior to surgery. To say we are emotional would be an understatement, we are on a roller coaster ride of ever changing feelings- from fear and anger to acceptance and sometimes even contentment, this is our lot in life and we are having to lean on a daily basis what the "new life" is like. One thing that blows my mind is how much deeper my emotions and opinions are these days, this is directly in alignment with the realization of what my true priorities in life are. Rion thinks it's funny that I no longer have to make the bed each day before I leave or clean the dishes up before going to bed, but I sure as heck don't miss an opportunity to tell him how much I love him or snuggle up on the couch! What used to seem so important no longer matters a bit to me and things I used to slack on, like not going to bed mad or always saying I love you before leaving, now mean more to me than being on time or getting a full nights sleep.
In a way I've appreciated these past 2 months and the opportunity to show Rion how much I truly love him and care about him before he undergoes this super scary surgery (and we finally get the biopsy results and must decide what to do next.) The waiting as been excruciating for both of us but the time we have spent together is invaluable. It has also showed us who are true friends are and made us grateful for the genuinely good people in our lives. It would be a lie to say everyone has responded to the diagnosis as we would have liked- people we thought were good friends have disappeared or become visibly uncomfortable when we told them about Morton, a few unreturned phone calls later and it's clear that they can't, or don't want to, be a part of our lives during this crucial time. While it was hard to understand at first, I have come to the realization that we are blessed with the best friends and family anyone could ask for. Relatives we hardly spoke to have become frequent contacts and friends we hadn't spent time with in years are coming forward left and right to do things for us we would have never even thought to ask for. I wish there was a way to make everyone understand how much this means to us because thank you just doesn't seem like enough. Both Rion and I hope that we are able to return the favor one day so you can all feel as blessed by us as we have been by you!
Last, I am so glad that both Rion and I have both chosen to cling to God during this time of need instead of turning away from Him. I honestly couldn't imagine it going any other way but just thinking about the turmoil and frustration it would cause if we weren't on the same page spiritually is overwhelmingly painful. We are both trying to use this as an opportunity to deepen our personal relationship with God & our trust that He is holding us in his hand even when it feels we are all alone. While I firmly believe God doesn't give us more than we can handle, I know that the upcoming days, weeks & months might seem unbearable. I have enjoyed praying more together and hope to start doing a daily devotional for cancer patients once Rion has recovered enough from surgery.
Thank you again to everyone for all of your thoughts, prayers, cards, calls, texts and everything else you have done to help us feel the love that you have for us. We are looking forward to the last few days of spending with family and friends until we leave Tuesday for North Carolina. I probably won't update the blog again until we are in NC and let everyone know how Rion's pre-op stuff goes on Wednesday. Please continue to pray for peace and calm nerves as well as safe travel for us and all of the family coming with us.
Love in Christ,
Emily & Rion
Sunday, January 1, 2012
Happy New Years and final surgery schedule
We hope everyone had a safe and fun New Years Eve celebration and is ready to dive head first into 2012. Looking back, 2011 was by far the best year personally for both me and Rion, at least up until November. But as our faith in God grows more and more, I can't help but wonder what exactly God has planned for us. He is a wonderful and awesome God and I am just blessed for each and every day that Rion get to spend together learning more about this crazy journey we call life.
But I digress, my real intentions for this post was to bring everyone up to speed as to what is going on with insurance, surgery, Duke, etc. I know that when I last posted we were on vacation- surgery had been scheduled and then canceled because our insurance couldn't be verified until it was processed and I was told processing could take weeks. I was discouraged and angry and honestly ready to just blow everything off and try to forget about it while we were on vacation. But one (of many) of God's angels intervened and when our plane touched down Friday, December 23rd, Rion and I both had voicemails from the insurance company that his application had been approved and all they were waiting on was our 1st payment to finalize everything and give us our policy #. WOW!! If you aren't following along, what should have taken weeks and possibly monthly, took a little under 48 hours. But I didn't want to jump the gun yet and get back in touch with Duke, blog, book hotels, etc, because I wanted to make sure this time everything was a done dear.
I am getting ahead of myself slightly, I realize we never shared that after Duke canceled the surgery for January 4th, they called back later that day and told us the neurosurgeon wanted to go ahead and schedule a date for later in January which would give us time to (hopefully) get our insurance in place as well as not prolong the surgery too long to the point it might get dangerous for Rion. The new date they gave us was January 26th with all of Rion's pre-op on the 25th. But we would still have to get them our insurance policy # with plenty of time for them to call the insurance company and pre-certify that the surgery would be covered by insurance. At the time we were still operating under the assumption that we would have to go through the normal channels to get our policy issued and that 4-6 weeks was our best guess as to when we would have the information to give to Duke. So we hesitated to tell everyone the new date.
December 24th we over nighted the payment to the insurance company knowing that they wouldn't receive and process it until after Christmas. Over Christmas weekend Rion started having some serious doubts as to whether or not he wanted to move forward with the surgery. He spent most of last week on the internet doing research and corresponding with people who have been through various treatments for brain tumors. Meanwhile the insurance company inevitable come up with some loose ends pertaining to our paperwork that had to be tied up before they could get Rion's policy issued. However, on Thursday, 1 week after the nice congressman got involved, we were given our policy # and the phone # for Duke to call & verify coverage. Additionally Rion made a final decision that moving forward with the surgery is his best option so we are all set to head back to Durham January 25th for surgery on the 26th!
We hope that everyone can understand why we've waiting so long to update the blog and/or FaceBook. The emotional let down of having surgery scheduled and then canceled was indescribable. As much as we are apprehensive and scared about removing Morton, we know in our hearts and minds that is Rion's best chance for survival and to live a happy, healthy life. Will he be cured? No, you can't be "cured" of a brain tumor. But can he live a somewhat normal life? Yes, he can, many people that have brain tumors go on to live long, healthy lives with the occasional disruption of a follow up MRI or round of chemo. But we'll get through this, and as long as Rion is happy and feeling good then everything we are going through now, and about to go through with surgery and follow-up treatments, will be well worth it. We simply have to place out trust in God that He is in control and that His will for Rion be done- whatever that may be- and that we have the grace and faith to accept what ever comes our way.
Unless something comes up pertaining to the surgery I may not post again until we get closer to traveling back to Durham. If anyone feels led to send Rion a card or letter in the mail, please send me an e-mail and I'll give you our mailing address. We are keeping all of the cards/letters we receive so we were are feeling particularly alone or scared we can re-read them to remind ourselves how many people are praying for us and how many people love us.
God Bless you all in this new year!
Emily, Rion (and Morton)
But I digress, my real intentions for this post was to bring everyone up to speed as to what is going on with insurance, surgery, Duke, etc. I know that when I last posted we were on vacation- surgery had been scheduled and then canceled because our insurance couldn't be verified until it was processed and I was told processing could take weeks. I was discouraged and angry and honestly ready to just blow everything off and try to forget about it while we were on vacation. But one (of many) of God's angels intervened and when our plane touched down Friday, December 23rd, Rion and I both had voicemails from the insurance company that his application had been approved and all they were waiting on was our 1st payment to finalize everything and give us our policy #. WOW!! If you aren't following along, what should have taken weeks and possibly monthly, took a little under 48 hours. But I didn't want to jump the gun yet and get back in touch with Duke, blog, book hotels, etc, because I wanted to make sure this time everything was a done dear.
I am getting ahead of myself slightly, I realize we never shared that after Duke canceled the surgery for January 4th, they called back later that day and told us the neurosurgeon wanted to go ahead and schedule a date for later in January which would give us time to (hopefully) get our insurance in place as well as not prolong the surgery too long to the point it might get dangerous for Rion. The new date they gave us was January 26th with all of Rion's pre-op on the 25th. But we would still have to get them our insurance policy # with plenty of time for them to call the insurance company and pre-certify that the surgery would be covered by insurance. At the time we were still operating under the assumption that we would have to go through the normal channels to get our policy issued and that 4-6 weeks was our best guess as to when we would have the information to give to Duke. So we hesitated to tell everyone the new date.
December 24th we over nighted the payment to the insurance company knowing that they wouldn't receive and process it until after Christmas. Over Christmas weekend Rion started having some serious doubts as to whether or not he wanted to move forward with the surgery. He spent most of last week on the internet doing research and corresponding with people who have been through various treatments for brain tumors. Meanwhile the insurance company inevitable come up with some loose ends pertaining to our paperwork that had to be tied up before they could get Rion's policy issued. However, on Thursday, 1 week after the nice congressman got involved, we were given our policy # and the phone # for Duke to call & verify coverage. Additionally Rion made a final decision that moving forward with the surgery is his best option so we are all set to head back to Durham January 25th for surgery on the 26th!
We hope that everyone can understand why we've waiting so long to update the blog and/or FaceBook. The emotional let down of having surgery scheduled and then canceled was indescribable. As much as we are apprehensive and scared about removing Morton, we know in our hearts and minds that is Rion's best chance for survival and to live a happy, healthy life. Will he be cured? No, you can't be "cured" of a brain tumor. But can he live a somewhat normal life? Yes, he can, many people that have brain tumors go on to live long, healthy lives with the occasional disruption of a follow up MRI or round of chemo. But we'll get through this, and as long as Rion is happy and feeling good then everything we are going through now, and about to go through with surgery and follow-up treatments, will be well worth it. We simply have to place out trust in God that He is in control and that His will for Rion be done- whatever that may be- and that we have the grace and faith to accept what ever comes our way.
Unless something comes up pertaining to the surgery I may not post again until we get closer to traveling back to Durham. If anyone feels led to send Rion a card or letter in the mail, please send me an e-mail and I'll give you our mailing address. We are keeping all of the cards/letters we receive so we were are feeling particularly alone or scared we can re-read them to remind ourselves how many people are praying for us and how many people love us.
God Bless you all in this new year!
Emily, Rion (and Morton)
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