Doctor appointment Tuesdays

I am going to try and make this a weekly feature  (HAHA- like I can do anything with any consistency right now) and update everyone once we have our doctor's appointments on Tuesdays.

Today we met with the radiation oncologist and medical oncologist to do Rion's blood work and discuss how treatment is going so far. The doctor's appointments went well it was just frustrating that EVERYTHING was running behind today- both doctors and his radiation treatment were at least 20 minutes late and we were early to everything. The good news is that all of his blood work came back good- white blood cells, platelets, hemoglobin- everything was exactly where it should be.  I am so glad that his body seems to be tolerating the chemo & radiation so well. Except for the nausea last Thursday and the reaction to the anti-nausea medication Saturday, we haven't had any  major complications from treatment. We were prescribed a new as needed anti-nausea medication and given the go ahead to quit taking the full time anti-nausea medication around the clock so hopefully things will remain under control. I am just glad that we have a regiment that is working and so far the side effects are minimal. Today was Rion's worst day by far for fatigue- he described it as feeling foggy and hazy like he had just woken up, except it lasted for half the day. After a good lunch he was able to regain some of his energy and work around the house a bit. Hopefully the fatigue will just be an occasional battle and not something we have to work around every day, but in the grand scheme of things, I know that it could be so much worse.

That's really all from today so I'm going to keep it short and sweet tonight.

Blessings,

Emily

1 week in

Rion just completed his 5th radiation treatment and has been on the oral chemo for 7 days now. We are both relieved that he is doing so good considering what his body has been through in the last week.

Thursday was a rough day, he was hit with overwhelming nausea that we could not get under control. Friday morning the doctor's office switched his full time anti-nausea medication and had us start giving him the as needed anti-nausea meds every 4 hours. The idea was to keep this up for the weekend and then meet with the doctor on Tuesday at our regular weekly appointment to make sure everything was under control. Unfortunately something in the as needed anti-nausea meds did not agree with him and he had a pretty scary reaction on Saturday- his jaw locked to the point that he couldn't close his mouth or speak! One frantic call to the on call oncologist and they knew exactly which med was causing it when I described what happened and luckily it could be stopped with Benedryl. Rion woke up fine Sunday morning except his jaw was extremely sore for being clenched for a few hours the previous day. He has not had any nausea and is just taking the full time anti-nausea medication every 8 hours. His energy & appetite are still doing amazingly well which we pray will continue!

Tomorrow we have our weekly appointments with both the radiation oncologist and the medical oncologist. I am hoping that when they do his blood work (medical oncologist) all of his levels will come back ok. It's some times hard for us to remember that he needs to be careful not to cut himself & to take extra precaution to avoid infections because he is more susceptible to bleeding & illness while on the chemo. But at the same time he looks and acts normal and we are trying to keep our lives as normal as we can during all of this.

I don't really have much new to report except that I feel like I am waiting for the other shoe to fall- I'm so afraid we'll be hit with another side effect or drug reaction that will be more serious than what we've dealt with thus far. In both situations, the nausea and the lock jaw, I felt so incredible helpless having to just stand by while he was miserable, it's hard to watch him suffer and not be able to help. I know it drives Rion CRAZY with me constantly asking him how he feels, if he needs anything, did he take his meds, etc. I'm trying to find that balance between being a diligent caretaker and remaining a loving wife- never in a million years did I think this would be the kind of balance I'd be struggling to find. It still feels wierd to think of Rion as having cancer just as it took months to accept he has had a brain tumor (Amen to that! He HAD a brain tumor!!) But it is what it is and I think we've been able to find acceptance and make peace with the diagnosis. There are still times where I briefly feel overwhelmed and fearful of what is to come but those times are happening fewer and further between. I still feel blessed to have Rion in my life and have this opportunity to take care of him and show him how much I love him.

If you had told me 3 months ago, right after the diagnosis, that something good would come out of all of this I would have laughed at you. But as cliche as it sounds, I have find myself happier over all with life than I was before. I was always complaining about something- not having enough money, not being happy where I was in my life, not having enough time to do all the things I wanted to do- and I forgot to just be happy with the fact that we had our health and our love. But now I am happy to just wake up and see Rion next to me. I am happy that I work with people who understand that all the time I am having to take off work is not because I want to but because I have to. I am happy that we now know who our true friends are and that family has been brought closer together. I am happy to just sit back and relax and enjoy each moment as it happens. Rion and I have stopped watching TV as much as we did before because just being together and playing with the dogs or talking is enough to keep us entertained. We have simplied our life and in the process found so much joy in the little things that were often overlooked before.

Please pray that Rion continues on the path that he is on as far as feeling good and maintaining his positive attitude. Also please pray for my strength as some days I feel like I just can't deal with anything more and then inevitable I am given a new problem to fix or something else to keep track of. And pray that everyone in our life knows how much they mean to us and how much we appreciate everything they do for us even if we don't alwasy have time to thank them personally or tell them I love you.

Blessings,

Emily

4 weeks post op

Here is a picture of Rion's incision as of today, 4 weeks after surgery. It is healing very, very well and the doctors are pleased with the progress. He still has frequent "headaches" and it's hard for him to differentiate between internal pain and pain of the actual incision. But for the most part he is feeling good physically- AMEN!

Treatment started

Just a quick check-in to let everyone know that Rion did start chemo & radiation yesterday and everything went great! He didn't feel sick at all after taking the chemo and of course nothing happened at radiation. We do expect Rion to have some hair loss and skin sensitivity due to the radiation but that will not likely develop until he is a few weeks into treatment. We pray hard that these are the only side effects he experiences as we fear for worse happening. Praise God for a good 1st day as it lifts our spirits so much!! We have treatment at 3:30 today and then meet with the radiation oncologist briefly afterwards.

I also wanted to share the good news that the fertility preservation was success and nothing was damaged/harmed during transport Monday. The accompanying blood work has been received and there is nothing left for us to do in regards to this. We were so fearful that the specimen wouldn't be usable and we'd have to wait and see 18 months from now if the chemo or radiation caused infertility. While we still pray this doesn't happen, we at least know that we have a back up plan just in case.

Rion's treatments will be at 11:00 starting next week and except for Tuesday he'll be having friends/family taking him. I think we have next week covered but if you're close by in Monroe and able to help us out, please e-mail me so I can get a list together of people we can rely on. Also, if you have a specific day of the week you can help us, let me know that as well.

Last, some of you may heard or seen on Facebook that I was in a minor car wreck yesterday. I am fine and the other party involved was too. Thank goodness it wasn't my fault but now I have yet another thing on my to-do list. I'm sure God doesn't give us more than we can handle but sometimes I wonder if he has me confused with someone else LOL

Blessings,

Emily

Hard cont.

I apologize for ending the last post so abruptly but it was a very emotional post to write and I was having a hard time getting through it. I want to thank everyone who has reached out to us over the weekend and offered advise, prayers and assistance- thank you all so much! Here is where we are today in regards to everything.

1.) Chemo medication- Rion just texted me that his pills were FINALLY delivered this morning. After speaking with our prescription drug company Friday numerous times, they are allowing us to be billed for the prescription which gives us more time to get our application for financial assistance approved. There was a mix-up in the delivery schedule and they were supposed to arrive on Saturday, after waiting around ALL.DAY.LONG to sign for them, we finally called and were told that the shipments were behind and they would *try* to get the medication to us Monday. I explained that they needed to do better than try, as Rion has to start taking them at 7:30AM Tuesday; they couldn't make any guarantees but now that they are delivered it's over and done with. We will hopefully get the financial assistance to pay for the prescription by the time we receive the bill, I am going to look around this week and see if there are any more grants/aid sources that I have missed. I've applied to about 4 and waiting on paperwork back from the Duke oncologist to finish up 3 more applications.

2.) Fertility preservation- With God's help, I was able to get the LiveStrong financial assistance application put together, submitted and APPROVED on Friday! We filled out all the paper work this weekend and sent the kit back this morning. My only worry now is that we should have waited until later in the day to drop the kit off at FedEx because it won't even be picked up until 4:00 this afternoon. But there is nothing we can do about it now. Once the kit is received tomorrow, the specimen will be tested to see how much if it survived transport, we can call Wednesday to get the numbers and see if it's worth it to preserve it for future use. Please, please, please pray we get good news! We need some good news these days and this is something that means so much to us I can't even put it into words.

So at least things are coming together before Rion starts all of his treatment tomorrow. We are a bundle of nerves not knowing what to expect but also ready to get this started and deal with whatever comes up.

We'll let y'all know if anything new comes up or any specials prayers are needed!

Love,
Emily & Rion

Hard

So much is hard about this journey that I never expected. I knew there would be the hassle of juggling multiple doctor's appointments, coordination of treatments, co-pays and prescriptions. But it is seriously a part time job keeping up with everything and making sure we stay on track and we are where we're supposed to be when we're supposed to be there and we have enough money to pay for what ever they're charging there : ) But this week we were totally thrown for a loop (multiple loops- loop-de-loops) when we went in for our "chemo teaching and financial counseling" at the medical oncologist office. I mean, we had already sat down with the awesome people at Duke and learned all about Temodar and Rion has really good insurance now, so what else could they throw at us?!?

Before I get into this I want to step back for a minute and bring up a few things. This post has been rolling around in my head for a few days and part of the reason I've hesitated to write it is because I wasn't sure how much detail to get into and how much personal information to share. The purpose of this blog has been and will remain two-fold: to keep all of our friends & family up to speed with that is going on and as a public record of what we went through so that hopefully somewhere down the line someone will find it useful when they are going through a similar situation. So even with the risk of TMI and over-sharing, I'm going to try and be as open and honest with what is going on, just like I have been.

Thursday's appointment shook us up pretty badly, I would say more than anything else we have been through thus far (diagnosis, the insurance fiasco, surgery, recovery, pathology, everything) because it made both of us realize that this isn't just something we have to deal with short term, this is something that will be a part of our lives forever. And not only that, but it will affect parts of our lives that we never expected. The PA we met with for the teaching that told us very matter-of-factually the purpose of the chemo/radiation regiment was to prevent recurrence but more than likely there will always remain cancerous cells in Rion's brain that either don't manifest themselves into a tumor or eventually do. That was hard to hear when Dr. Henry Friedman (head of  Duke Oncology) straight up said that they (our medical team) is working to CURE Rion. You can see where these 2 bits of information contradict each other, and left us confused as to the actual goal of treatment. When we go back to Duke in April, after the initial chemo & radiation treatments, we will be seeking clarity on why exactly we are going through all of this. I have no doubt that it's in Rion's best interest to pursue a rigorous treatment schedule, to fight hard to get rid of as much cancer in his brain as we can. But can he be cured? Can it be eliminated completely? After Thursday we don't know the answers to these questions that we were fairly certain about prior to the appointment.

So, after that wonderful shock, we meet with the financial counselor to discuss the Temodar. To bring everyone up to speed, Rion is to start BOTH chemo and radiation treatments next Tuesday, but we had yet to obtain the physical chemotherapy pills he will be taking. Me being naive, thought the prescription would just be called into the pharmacy like anything else and we'd go pick it up. I had actually called the medical oncologist's office earlier Thursday to inquire about this because I checked and it had not been called in yet. They basically told me to just wait until our appointment but in the mean time they called Rion and told him he had to call the company that handles the prescription drug benefits and found out how much the Temodar would be, and that it would be shipped to us AFTER we made payment for it. Well Rion called and let's just say it was much more than I anticipated it would be, much, much more! Around $500 for the 1st 28 days worth of pills. But the financial counselor said that will our income, which is only mine now, we should qualify for financial assistance through an organization that helps people pay for their chemotherapy medications. The only downside is that it would take more than 24 hours for the application for assistance to be approved and we needed the medication to be shipped by Saturday afternoon to ensure we received it Monday for him to start taking early Tuesday am. So, we decided to give it 24 hours, see if the financial counselor could get our application expedited and if not, we'd have to put it on our credit card so they'd send it to us.

At this point we're thinking, ok, not only is curing Rion not going to happen, but we're going to have to probably put this huge unexpected expense on our credit card, which I've already had to use more than normal in the past few months for other unexpected expenses that have come up and we did not have the means to pay for them out of pocket. Great!

Simultaneously when we're discussing this with the financial coordinator, the oncologist social worker comes in to discuss some other important details about how this whole process is going to affect us, specifically as young adults. She offered us some information on young adult support groups and then asked if we had any children. When we told her no, she seemed surprised (isn't everyone HAHA.) We knew we couldn't try for conception from the time Rion began treatment up until 6 months after completion, but the chances of infertility were so minimal we might look into fertility preservation, but it wasn't an absolute necessity.  Up at Duke, we even got a personal narrative about a gentleman similar to Rion who was diagnosed at a young age with a brain tumor, chose to do sperm banking but then after treatment was able to conceive naturally without any problems. Ok, great, we're going to be like that! (Nevermind that God knew we were planning on starting a family very soon and delt us the blow that we would most definitely NOT be doing that which was some of the HARDEST news we received about the side effects of treatment.) But back to Thursday, the social worker here in GA was totally contracting what the social worker at Duke told us, and once again, it was about something extremely important! She sent us home with a kit for sperm banking by mail but clearly our window for getting it done (and getting the financing to pay for it) was very, very short.  When we got home and started reading the information about financing, provided through the Lance Armstrong LiveStrong foundation and the steps required to complete the kit, we thought there was no way we'd be able to do it and seriously considered saying forget it and not even trying. For the financing application, we would  have to get the oncologist to fill out a statement verifying Rion's diagnosis & the treatment regiment he would be following (to prove there was a need for fertility preservation,) send in the application, and have it approved all before Monday which is the last possible day to send off the kit. And for the kit to even be accepted, Rion would have to get blood work done to treat for infectious diseases (HIV & Hepatitis) and the results would have to be sent in along with the kit. So we had Friday to get everything done (blood work, financial aid) in order for this to work. I felt like crying.

I'm not trying to be dramatic, but I am going to cut this off now that I've sufficiently described our Thursday experience. We didn't do anything else for the rest of the day (it was 5:00 PM when we got home from the appointment) except for cry and talk. I will foreshadow a bit and say that Friday was a much, much better day and most of our issues have been resolved to our liking. But the details of exactly how that happened will have to wait for another day as it has taken me over an hour to type all of this and I've got things to do today.

Love and Prayers,
Emily & Rion

Much better day!!

Amen for better days!

This morning started off back at the radiation oncologist's office where Rion was fitted for his mask and neck rest that he will use during radiation treatments. The mask snaps down onto the neck rest and keeps him from moving his head during the treatments. Also, the mask can be marked on so they don't have to draw all over Rion's head/face & then expect him not to wash it off for 6 weeks.

Here is a picture he is letting me share of him & his "Hannibal Lector" mask:

The technician we worked with today, Dave, was fantastic and had the best attitude of anyone we have met throughout this journey. He is a twin also so him and Rion enjoyed talking about twin things and just joking around. For once we left an appointment laughing and smiling and it felt so good!

Rion's radiation & chemotherapy treatments will begin next Tuesday at 8:35 am. We still have not physically obtained the chemo medication he will be taking but I was warned last Friday by the doctor's office that it can take a little while to get the insurance company approval and have the prescription filled. Thursday (day after tomorrow) we have an appointment with the medical oncologist again to review the lab work from last Friday and go through their chemotherapy education session (sounds similar to what we did at Duke but they require it as well so whatever, I guess you can't learn too much about this stuff!) Hopefully then we will have our prescription or an idea of what the hold up is. Anyone that knows me knows that I worry excessively and the last thing I want is to have to postpone radiation because we didn't get the chemo meds by next Tuesday. I'm sure God is going to work this out, I really need to work more on my faith and quit trying to control all of this myself. Goodness knows I'm not really in control anyways LOL

Back to radiation treatments, normally they will be at the same time of the day for all 30 sessions but the treatment center is having to work us in for the 1st few appointments since they did not know that we (us & Duke) wanted to get started so quickly. The time will fluctuate for the 1st few days and then we will hopefully get our assigned time...please pray they give us 10 or 11 AM since that would work the best with my work schedule and the fact that Rion has to fast for an hour before and hour after; middle of the day would be very difficult for us to work around. But we'll do whatever it takes to get through this next 6 weeks, that's for sure. While Rion and I are still nervous about receiving radiation and the possible side effects, we are re-grouping and re-gaining our strength to get through this. I never really knew what an emotional roller cost was until we started on this journey back in November- I can go from crying to laughing to being sick with fear in a matter of minutes and often for no apparent reason. But that is when I draw on the strength of God and our friends/family and calm myself down enough to cope.

The last little bit of info I wanted to share is a personal praise that I went back to work today. I've been very anxious over this for a myriad of reasons- I've never been away from work this long without being unemployed and I had no idea what to expect once I got back. I had planned to return last week before we found out that Rion's tumor was malignant and would require the additional treatments so I didn't plan ahead to be out this long. But I work with absolutely amazing people who have gone above and beyond to help me out and keep me from coming back to any messes. Today really lifted my spirits to see how much they have done for me and how easy (I think) the transition will be back to working. I also had some anxiety over being that far away from Rion for that long but I think he enjoyed some time without me constantly asking him how he felt or if he needed anything : )

Wow! This is already too long. Nothing else really to report so I'll say good night & Happy Valentines Day. Oh, and he's an awesome "after" MRI picture showing NO MORTON in Rion's head:

Emily

Radiation Oncologist appointment

Today was our 1st appointment with the radiation oncologist in Athens that we will be using for Rion's 6 weeks of radiation treatments. It was a lengthy appointment in which we met the actual radiation doctor, his nurse and the social worker at his office. Everyone was very nice and professional and we feel we have made a good decision in picking this facility for Rion's treatments.  We weren't sure what to expect going into this appointment but we walked away more emotional that we thought we'd be.

Similar to our 1st appointment with the neurosurgeon at Duke, our appointment with the doctor was mostly about the "gloom and doom" aspects of radiation treatments, all of the horrible things that could possibly go wrong- side effects far more serious than we had expected. It's hard to walk into an appointment with your head held high, in a good mood with a positive attitude and walk out emotionally beat down and feeling as defeated as ever. We know from a practical point of view that more than likely Rion will benefit greatly from these treatments and have minimal if any side effects, but the possibility of things like permanent hair loss and total blindness are hard to overlook.

I ended up not going back to work today after this appointment because by the time it was over (11:00AM) I just didn't have it in me- I wouldn't have been able to focus so I stayed home another day to spend time with Rion and try to work through some of the sadness and fear we are both experiencing.

We have another appointment back at the radiation oncologist office tomorrow at 10:00 to have a CT scan done as well as have Rion fitted for the mask that he will wear during treatments. Hopefully at this appointment we will be able to set the time that Rion will receive radiation for each of his 30 appointments, I do know that they usually schedule them for the same time each day and we are praying we can get them mid morning. The doctor's office is going to work their hardest to get everything in place for Rion to begin treatment next Monday since that is what Duke has strongly encouraged and we agree that there is no need to wait any longer.

Please continue to keep us both in your prayers, to help us trust in God and have faith that He is in control and our worrying and stressing will do us nothing but harm. I will update once we get the actual radiation schedule and when radiation/chemotherapy will begin so prayers can be more specific (ie minimal side effects, peace, etc.)

Thank you again and God Bless each and every person who has said at least one prayer or send one positive thought our way. You are what gives us the strength to keep fighting this fight.

Emily & Rion

Knowing your limitations

Most of the posts I write here are for the most part factual and to the point, with a small amount of emotion thrown in at the end (so you'll know I'm really not a robot.) But it has been on my heart this week to write a more personal post and address one of the human aspects of this whole thing.

Rion probably will not ever be the same as he was before the seizure/surgery/radiation/chemotherapy. The social worker we met with this past week at Duke did a really good job of helping us see that it is unrealistic to expect the Old Rion back and instead we need to focus on finding the "new normal" for both of us.

I think it's human nature to try and get back to your normal routine as soon as you start feeling the slightest better after an injury or surgery. I know personally I've over done it when recovering from the flu and ended up delaying my recovery- I might have felt fine at the time but later I felt a million times worse and had to accept that I wasn't back to par yet. Rion has a bad habit of trying to jump back into things too quickly and ending up either in pain or over-exhausted.

If you can, try to imagine what Rion has been through physically and mentally over the past 2 months- even before surgery he suffered a pretty intense seizure & then started on and increased dosages of multiple strong medications. Since he has been recovering so well, sometimes it's hard for us to remember just how invasion the surgery was that he had: he had not only an incision in his skin, but also part of his skull removed (we saw the fracture on the MRI that was done this week.) That was just to get into the brain which was then touched, manipulated and cut; most people go their whole lives without having someone/something INSIDE of their skull, Rion spent 3 hours having his brain being operated on. The social worker explained that his brain is now bruised and swollen from the trauma it went through during surgery. My point being is that even though Rion may look and even feel ok, there is a lot of healing that has to take place before we know what he will be like now- the skull has to fuse back together, the swelling in his brain has to go down and the bruising from the surgery has to heal...and those are just the physical aspects of recovery.

We've also learned that Rion must also heal from the neurological damage that was caused by the seizure & surgery, these can also be exacerbated by the radiation therapy and chemotherapy that he is about to start on. Rion now suffers from attention deficit problems, expressive aphasia and some receptive aphasia (google it if you want to know more- but it refers to the speech problems he has,) and short term memory loss. What feels to Rion like a lack of concentration or confusion is actually a culmination of these 3 problems. He has to work extra hard to pay attention and communicate effectively, especially when there are multiple things going on at once ie carrying on a conversation while the TV is on and the dogs are barking. In order to talk on the phone he has to close him self off in a room where there are no other noises or distractions. As with the physical healing, there is no telling if or when this will get better.

I am sharing all of this with the hopes that everyone will understand a little better what exactly we are dealing with and going through. It's a struggle for Rion (as it would be with anyone) to try and return to some level of normalcy and familiarity but being held back by these physical and mental limitations. It leaves him feeling tired and frustrated that things aren't as easy as they were before and that he can't do as much. But this is just another aspect of having a brain tumor/cancer that must be accepted and worked through: accepting that Rion has limitations and learning to live within the new normal.

Please keep praying that God will continue to give us the patience to not rush back into our busy lives but take the time that is needed to heal Rion inside and out. As always you can e-mail me if you have any specific questions about what is going on and what we can expect to happen as far as recovery is concerned. We will also continue praying that God will help us accept the New Rion and be grateful that he is doing so well because we do realize it could be so much worse.

Emily

Medical Oncologist appointment

Everything went well today at our 1st appointment with Rion's medical oncologist (after waiting for an hour and a half which come to find out was due to an emergency and we were assured is NOT typical... all I can say is I sure hope not!)

This doctor will be prescribing Rion's chemotherapy both during radiation and afterwards. He will also perform routine blood draws (every 2 weeks while on radiation) to monitor the white blood cells & platelets to ensure the levels do not drop too much. The treatment plan remains the same: 42 consecutive days of a low dose of Temodar starting on the 1st day of Rion's radiation treatment, a 2-3 week rest period, and then a year of a higher dosage of Temodar. The higher dosage will be given for 5 consecutive days each month for 12 months.

As an aside, we will be using Temodar for a few reasons: 1) it is very powerful and able to pass through into the brain where as other chemotherapy medications are not as powerful and therefore not effective at treating brain tumors. 2) As an oral chemo, the side effects will be less than those of IV chemo drugs- no wide spread hair loss or debilitating fatigue are expected.

Along with monitoring the lab work, the oncologist will help us manage the side effects of the chemotherapy including nausea. They seem fairly certain Rion will have to deal with some nausea and to be pro-active he will start with anti-nausea medication at the same time he begins chemo. There will be additional medication he can take on an as-needed basis if the nausea is still a problem. Understandable this has me and Rion worried, no one wants to feel sick all of the time! But hopefully we can keep it under control and maintain an acceptable level of comfort.

Rion and I will be going to a teaching session next Thursday to further educate ourselves on what to expect while Rion is on chemotherapy and how to manage any side effects he may encounter. Our next doctors appointment is with the radiation oncologist next Monday at 9:30. This should be a fairly lengthy planning appointment but the aim of the whole treatment team is to being radiation treatments a week from Monday on February 20th.

We will let everyone know once the date to begin radiation is firmed up as we will be needing help getting Rion to and from the appointments. They will be scheduled for the same time each day, hopefully mid morning since Rion has to fast before and after each treatment. I will be taking him to the 1st few but then after that I am hoping to set up a schedule of rides for him each week- if there is a day of the week that works best for anyone and you want to help, please go ahead and shoot me an e-mail (gahendersons at yahoo dot com- spelled out to avid spam) so I can get a general idea of who will be able to help us with this.

Thanks again to all of our amazing family and friends who are going along this unfamiliar journey with us- although we may not be in frequent contact, we are still eternally grateful for everything that has been and is still being done for us.

Blessings,
Emily & Rion

Just checking in

Rion and I wanted to let everyone know that we are doing ok, just taking it easy today. I know a lot of people have tried to call, text or e-mail us today but we really need some down time to recover from our whirlwind trip to NC, absorb all the new info we've been given and catch up on some much needed sleep.

Rion was able to sleep last night after his panic attack but it pretty much wiped out any energy he had left after the long day we had. Today all he has done is sleep, shower & eat but he is in better spirits and just needs a little time to recharge his batteries (we both do.) We will be returning the calls/texts/e-mails as we're able but please know that any information regarding treatment, how we're doing, etc is being posted to the blog in a timely fashion- we're not hiding anything from y'all, promise!

Thanks again to everyone for your understanding and patience. I will update tomorrow once we meet with the medical oncologist in the morning as to how that appointment went.

Emily & Rion

Home from Duke (oncology plan)

Hello all and thank you again for giving us time to get home to update. Today was a long day to say the least, we started at Duke at 9:30 this morning and stayed until after 1:00, after that came the 6 hour car ride home.We had been home for about an hour and then the reality of the situation set in and Rion had a panic attack. When we are up at Duke and around other people like him, he is able to look passed the physical side effects. but when we come home he realizes that he will have some physical differences that might always cause people to stare or ask questions. The thought of having to explain himself for the rest of his life is daunting and unfamiliar.   He is doing much better now, tired from the mediation he took, but stable.

It is hard to explain the emotional roller costar we are on these days but I am trying to press on to get this information out before we turn in for the night.

We are full of hope and optimism after our visit this time. The slogan at The Preston Robert Tisch Brain Tumor Center is "at Duke there is hope" and that couldn't be more true. We've met with the deputy director of neuro-oncology, his nurse, the neuro-oncologist we will follow up with, his nurse, and a FANTASTIC social worker. We left feeling renewed and full of optimism that we're going to beat this thing. Dr. Henry Friedman (deputy director) said "the mission is no less than to cure you."

AMEN!! and AMEN!!

The actual treatment plan will include a mixture of chemotherapy and radiation. Rion will start with 6 weeks of radiation, 5 days a week (Monday-Friday) for 30 minutes a day. At the same time, he will be taking a low dosage of chemo (Temodar) for 42 consecutive days. After that we will travel back to Duke (April 8th) for a follow up MRI and meet with the neuro-oncologist to discuss the progression. Our goal is to see NO new growth!!

After a 2-3 week break Rion will start on a higher dosage of Temodar that will last for a year. He will take the medication for 5 days on each 28 day cycle until he has had 12 treatments. (We are not sure what the follow up scan schedule will be for this time- ie. 3 months, 6 months, etc, but I am sure we will learn at the April appointment at Duke.)

The most encouraging part is knowing that the side effects from the radiation and Temodar are small and unlikely. Rion will probably lose his hair on the side of his head where the treatments are being done- this loss could be permanent or temporary. But the chemo is not likely to cause wide spread hair loss or uncontrollable nausea. He will start on anti-nausea meds and then stop if it seems nausea is not causing him any problems. We will work together to keep his (our) activity level(s) up as this is the best method to combat fatigue. We have already begun focusing on eating more healthy, REAL foods and this will help with any gastrointestinal side effects that may occur. As scary as it sounded initially, we both feel comfortable following the treatment plan that Duke has laid out for us.

The next steps have already been lined up as we were traveling back today. We will meet with the medical oncologist (who will prescribe the oral chemo) this Friday. Our 1st appointment with the radiation Oncologist will be next Monday morning. The initial appointments with each with be the typical paper work and medical history formalities, we will also need to go through a few planning appointments with the radiation oncologist before treatments can begin. With the urgency that Rion's diagnosis presents, we hope to start radiation the week after next. By this time his incision should be healed enough and we would not want to delay treatment any longer.

I re-read everything here and it still amazes me that yes, this is really happening. I want to wake up back on 11/21/2011 and have a do-over. Rion doesn't send me the text that Larry Munson has died and I don't respond that I already knew (which he never received.) And then I don't get that horrible phone call from his boss on my way to work that I need to head to Athens because something is wrong with Rion and they don't know what it is, but it's bad and I need to be careful but try to hurry. My life has changed so much in the past 2 months, I really can't describe it. Unless you've also been faced with your own mortality, or the person you are closest to in this world facing theirs, then you really can't understand what it's like. But I also know that I will NEVER stop fighting for Rion and praying that God has it in his plans to give us as much time together on this earth as possible. I know that none of us live forever, but the thought of losing my husband right now is just too painful, I refuse to acknowledge it's a possibility. No, Rion is a fighter and he is going to beat this thing and be CURED as Dr. Friedman said.

I have a lot more I want to share about our meeting with the social worker but that will have to wait until tomorrow as it's late and I still haven't had dinner. Rion

Love and blessings,

Emily and Rion

Just checking in & new pic

We have made it to Duke and we're waiting for our appointment at the Preston Robert Tisch brain tumor center, neuro-oncology clinic. We'll update later today or tomorrow once we have information to pass along. Thank you for your patience and giving us time to process everything. Our phones will be off today and tomorrow so please don't try to call. We love and appreciate each and every one of you.

Click through if you want to see a new photo of Rion's incision with no stitches!! It looks great (stitches were removed yesterday morning, photos taken just now 2/7 9:20 PM)

God Bless,

Emily & Rion

Update & Pathology results

** EDIT after reading the pathology report we have an exact diagnosis: anaplastic oligoastrocytoma (grade 3.)

First off, I apologize for taking so long to update. The last few days have been a whirlwind of coming home (yay,) getting the pathology reports and having to call close family and friends to explain what our next step is.

Good news first, Rion is doing GREAT! After he was discharged last Saturday we moved into a hotel suite with his mother as our temporary home until he was recovered enough to make the 6 hour car ride home. Saturday & Sunday were mainly about pain management, tapering off the steroids and sleeping. For the most part, things went smoothly until Sunday night when Rion had some breakthrough pain during the middle of the night. One frantic 2AM call to the hospital and permission to give him more pain medication than prescribed and we were able to get the pain under control and did not have any more episodes like that. Monday afternoon Rion really started to come back around- he wasn't sleepy and was content to watch TV and take our daily strolls around the hotel to rebuild his strength. By Tuesday morning he was ready to go! He got up and showered, put on regular clothes, ate a hardy breakfast in the hotel lobby & even ran to the store with me to pick up a few items. After all of that and no pain/fatigue, I called our surgeons office to see when we could leave to come home. We must have answered her 20 questions correctly because she said we were free to go whenever. After hanging up I turned to Rion to give him the good news & ask him when he wanted to leave and his immediate response was "NOW!" So that's what we did. I hesitated to put anything on FaceBook/Blog just in case we started the trip home and had to turn back around or stop but everything went great; Rion slept a little in the beginning and we stopped at least once an hour so he could get out and stretch his legs. He made the whole trip home with no pain meds and no complaints (except that we weren't already there!)

His incision is healing great- no drainage or signs of infection. We've been diligent about cleaning it with water/peroxide as directed and keeping antibiotic ointment on it. The swelling has gone down tremendously and it's not near as sensitive as it was at first. We have an appointment next Monday morning to get the stitches out at our neurologists office here in Athens and I don't foresee any problems coming up that would prevent that from happening. I am going to post a picture at the end of the post but like before I will make it to where you have to click through to see the photo in case that isn't your thing!

Now for the not so good news, about an hour from home I received the call from Duke that the pathology report had come back. All along we've believed the diagnosis would be a low grade glioma- meaning that the tumor (Morton) was the only abnormality and by removing it, we would be in the clear and not have to go through any additional treatments. Follow up scans would be scheduled every 6 months or so but for the most part it would be over and done with. Well, that's not the news we got. Rion has what's called a high grade glioma. Like other cancers in the body, brain tumors are graded on a 1 to 4 scale- 1 & 2 are low grade/benign (1 normally only occurs in infants) and 3 & 4 are high grade/malignant meaning that besides the primary tumor there are additional abnormal cells that must be treated in order to prevent recurrence and multiplication. Rion's tumor was a 3.

Our next step is to travel back to Duke next week for a 2 day "boot camp" that will describe in more detail exactly what our treatment will entail: quantity, duration, etc. We do know that it will involve a combination of chemotherapy and radiation. Between now and then we must find an oncologist here in Georgia because while Duke will create the treatment plan and monitor it, we will actually receive treatment locally until it's time for our next follow-up with Duke.

I hope you can understand now why we're been so long updating everyone. This was not the diagnosis we expected at all and we are still reeling from the shock. There have been a lot of tears cried these last few days as we were forced to admit that Rion doesn't just have a brain tumor, he has cancer. Never in my life did I expect at 27 for my just-turned-30 year old husband to have cancer! I am still not sure that I have fully accepted what this means, all I know is that we must keep pushing on and fighting. I may be scared and angry, but I am also stubborn and dedicated to seeing this through to the end. The pathology report did put a new spin on things, but I'm praying that God will continue to keep his hand over us and help us cope with whatever comes next.

Thank you again for all of the prayers & kind words. I want to especially thank the anonymous donor who paid our hotel room from last Wednesday through this Tuesday in full- whoever you are you have no clue what it does to my soul to know that there are still such good people in this world when all we seem to hear about are the negative. You have renewed my faith in people and I will be looking for an opportunity to pass on a blessing to someone else.

We will make sure to keep everyone posted as to what Rion will be going through over the next few weeks/months. Please keep praying for us and for our treatment team.

Emily Henderson