Made it to Duke

Rion was just taken back for his MRI and we meet with the doctor at 10:30 tomorrow morning to go over the results. Please say a quick prayer for us tonight- Rion's nerves are already shot and mine aren't much better. It has been a long day and we know tomorrow will be also...we pray we have good news after the appointment in the morning!

Emily

Published with Blogger-droid v2.0.4

T-shirts are finally here!!!

We picked up our custom made t-shirts Friday afternoon from the printer. We are selling them as well as the gray brain cancer awareness bracelets as a fund raiser to help off set the staggering medical debt that we have accumulated over the past 4 months. The t-shirts are 100% cotton pre-shrunk and we have them in small, medium, large & extra large- just as a reference I wear a small & Rion wears a large. Here is Rion modeling the front & back

The are actually nicer than I thought they would be; the material is very durable & I love how they used lighter stitching that matches the lettering. The bracelets are rubber and 1 size fits all- they are light gray and say "Beat Brain Cancer" in the same font but black that is used on the back of the shirts. Thank you to Donnie at Skyline Prints (http://www.skylineprints.com/) for taking such good care of us!

We are selling the bracelets for $3 & the t-shirts for $15. If you live out of state or too far away we can definitly ship them...the cost is $3.50 though to cover the additional expenses. We prefer cash or payment through PayPal. I am available Monday-Friday to meet folks in Conyers to pick up orders and Rion is home in Monroe during the day.

If you're interested please shoot me an e-mail to gahendersons at yahoo dot com (spelled out to prevent spam) and let me know how many, what sizes, when you want to meet, etc. Please remember that we are leaving early tomorrow for Duke and won't be back until late Wednesday so Thursday is the earliest we're going to be available unless you come to Conyers by 5:00 today.

Thank you to our wonder friends and family and everyone that has gone out of their way to help us out- we couldn't get through this without our amazing support groups that continues to blow us away with the amount of love we are shown.

God Bless,
Emily

1 week post treatment

Today was our follow up with the local medical oncologist to see how Rion is doing 1 week post treatment. We went into the appointment with a few concerns, we have a few new concerns, but over all he is still doing well. Because I'm lazy (and trying to get this all down before I forget anything) this post will be more bullet form than pretty paragraphs with fluff built in : )

1.) Rion's platelets are still down slightly, actually they are down more than they were before. They are at 70 now and 2 weeks ago were 80. However, this is nothing to be concerned about for 2 reasons- they aren't all that low (below 10 is considered too low even though anything under 100 is undesirable) and it normally takes about 2 weeks after stopping chemo/lowering dosage to see an improvement. He should be back up to snuff by the time we begin the next round of chemo. Which brings me to part 2...

2.) His tentative date to start the next round of chemo is May 1st. We're assuming that we'll continue on with the plan that was laid out by Duke back in February which calls for 12 cycles of chemo that will be taken for 5 consecutive days and then stopped for 25. Our prayer is that Rion is able to continue on with the same dosage that he just took for 42 days since we know he can tolerate it (and also because we are concerned with what a higher dosage might due to his blood counts since the lower one did have a negative effect on his platelets.)

3.) We are going to be scheduling an appointment with an optometrist to get Rion's eyes examined, specifically his peripheral vision. Rion has been running into things lately, mainly door jambs as he tries to pass through a door way. As humorous as it sounds, the doctor immediately perked up when we mentioned it and performed a sort of rough test to see if he could detect anything abnormal about his vision; it does seem that he has less peripheral vision is his left side than his right...the side where all the radiation was concentrated which makes sense. One of the scariest side effects of radiation was damage (permanent & temporary) to the optic nerve. While Rion's tumor wasn't located close enough to the optic nerve to cause damage, it appears that the radiation beams might have hit it just right to cause him some trouble. Prayer #2 is that this is only temporary and doesn't get any worse. I am concerned that it might affect his ability to drive if it doesn't rectify itself by the end of next month when he can legally drive again.

Wow, it seemed like so much more when we were in the appointment for 30 minutes...maybe it was the 50 minutes we had to wait once we got there this morning. Hmmmm.... but regardless of the wait, I would recommend this group of doctors hands down to anyone going through chemo and/or radiation. They are always running behind because they take the time to really listen and answer all of your millions of questions, even those that seem insignificant. If we had felt rushed for time this morning I doubt we would have mentioned the running into things which turned out to be kinda a big deal.

Regarding the local doctors, I am also super impressed with how concerned they are about Rion's comfort level- he sneezed this morning and the doctor actually asked if he had allergies that were bothering him and then proceeded to discuss the different allergy medication that was safe for him to take. Wow! All just because he happened to sneeze when the Dr was in the room. He could have just said 'bless you' and let it go but he took the few extra minutes to answer a question that we hadn't even thought to ask. We also mentioned that the pain medication he has been on since surgery and still needs occasionally doesn't seem to be agreeing with him any longer (an aside, he had actually stopped taking it all together a week or so ago because it made him feel so lethargic and icky when it wore off but the plain Tylenol just wasn't cutting it either so he has been in more pain than normal lately.) Without even batting an eye or giving us a shady look he asked if Rion has taken anything before for pain that worked and then prescribed him enough of the new (narcotic) medication to get us through the next month.

I guess I still have a hard time seeing myself and Rion as adults and actually being taken seriously by all of the doctors and nurses; it's a combination of age/lack of experience dealing with a major medical issue and just plain lack of education that leaves me amazed that these doctors are so concerned about our well being and comfort. It's easy to forget how serious our situation is when we're at home but then in the office when we have MDs bending over backwards to help us it reminds me that this isn't just a routine headache we're treating. It really does ease some stress to know that we can bring up anything we are concerned about, no matter how minor it may seem, and it will be addressed immediately and without criticism.

Ok, that's all from our appointment today. Rion is doing really, really well all things considered. He still has to nap some days, especially if he was really busy the day/night before. He has also found that he gets dehydrated super easily and has to drink a ton of water to keep from feeling poorly. His weight is still doing well, down just a little bit from where it was at the end of treatment but then again he had gained 5 pounds over those 6 weeks so still remaining constant. His appetite is good and we're still focusing on eating "real" foods 90% of the time and avoiding processed, refined, franken-foods.

I am not sure if I'll post again before next Tuesday when we head up to Duke but please, please, please pray for us. The MRI the evening of the 17th looms on the calendar and I can't help but feel a sense of impending doom which is probably just my nerves getting the best of me. As much as I complain about feeling overwhelmed, I am super glad to be as busy as I am so that I don't worry about next weeks appointments any more than I already do. As always Rion is super positive and optimistic and some days I feel like I am the patient and he is the caregiver.

One last note, some people have asked about the t-shirts & bracelets and I should have them any day now! They were supposed to be done last Friday but I'm sure it's just a matter of time before I get the call that they are ready for pick up and we'll finally be able to start selling them. Thanks for all of your patients and understanding- there is just 1 of me and I have about a gazillion balls in the air right now.

Here's my favorite cancer patient showing off what he calls his "good side..." I just can't express how beautiful his head looks to be bald- I just love to rub it & kiss it!!

Love and Blessings,

Emily

Out of left field

After riding high on the feeling of being done with the 1st round of treatment, yesterday evening I was brought crashing back to reality. This was brought to my attention via Facebook and Rion and I spent a good deal of time crying & praying for this sweet family and their precious baby girl that they lost to Leukemia yesterday. Please take a minute today and say a prayer for their family. I just can't imagine what they are going through right now. Here is their family blog, very similar to the one I write on here:

http://www.needhamcrew.blogspot.com/

From what I gather they are local from the greater Athens area...it could have been anyone's little girl that God called home yesterday, cancer or not, there is nothing that makes us immune to death when it's our time to go.

As the high from finishing treatment wears off I am left feeling somber and resigned to accept that our journey is far from over. It's the unknown that scares us the most- what will the next MRI show? How will Rion react to the next round of chemo? will it even work? I am filled with doubts and insecurities that make it hard to keep from crying today.

But mostly I am sad for the Needham family. I don't know them at all but reading this hits too close to home for me and I can't shake the depression I fell into yesterday. Please hug your family today and tell them how much you love them. Let the little arguments go and focus on what really matters, enjoying each and every moment that you have to spend with your loved ones. And please, please, please say a prayer for the Needham family that God will carry them through this experience and give them the strength they need to move forward.

Emily

DONE and DONE

Yesterday was Rion's last day of radiation and last day of the 1st round of chemo. I took the day off so I could take him to his last appointment (I knew we'd have to schedule the follow up appointment as well while we were there,) get some errands run that need to be done during the day, and spend some extra time together in celebration that we are done with this phase. I remember back at the end of February when we were getting started it felt like 6 weeks was sooooooo far away and that it was going to take forever to get to the end; we were so scared and nervous and not sure what to expect from the whole process- would Rion be sick? In pain? would his levels drop & they have to stop treatment or adjust his dosage? We he be so tired that there would be days he stayed in bed? Looking back though the time has really flown by and I am so, so grateful that it was a relatively painless 6 weeks with very few complications.

But nothing through this whole process has meant more to us than the love and support we've received from our friends and family. Y'all, I only took Rion to treatment one day a week and the first 4 days, 10 times total, and never once did we have to ask more than 1 person to take him because we got stuck without a ride. Never once did anyone tell us they were too busy or had something else to do. Never once did someone we ask have anything more important going on in their life. I can not describe to you how incredible awestruck we are at the magnitude of the love our friends and family have for us.

There have been days that I was stressed beyond belief- bills piling up, paperwork to be sorted through, a messy house staring me in the face- all things that when combined left me feeling overwhelmed and under appreciated! But then I'd get a letter in the mail, or a phone call, and someone would say just the right thing and I'd remember that I'm not just fighting this battle for me & Rion, but we are going to get through this so we can educate other young people about dealing with a cancer diagnosis and resulting treatment. This whole thing is so much bigger than us and dwelling on every.little.detail distracts from the big picture and what's really important; our family & friends have not only helped out tremendously with the financial aspect & the coordination of appointments, but they have kept me grounded and been there to constantly reaffirm that I'm doing a good job of whatever it is that I'm doing. I tried to think up something tangible I could give to everyone that has helped us out, a token of our appreciation, but I'm left dumb struck as to what to do. So instead I'm recommitting myself EVERY DAY to doing the best I can for me & Rion, and doing the best I can to turn this seemingly horrible experience in to something positive and useful. There isn't a single person that has helped us out that wouldn't be proud to be part of something bigger and if I can make that happen then I am!

We are working on starting a non-profit organization and doing a couple of fund raisers, but more and more I am focusing on the future and what comes next...i don't want this to just stop once Rion finished chemo & we have a set of clear scans. I want to keep the momentum going and do whatever I can to impact the lives of others in a positive way, to be their beacon of hope as our family & friends has been to us. Rion is blessed with an extended family that has put aside hard feelings from things that happened in the past to be there for us when it really mattered. I couldn't imagine how we would have gotten through this ordeal without them (and they are still continuing to support us in so many ways, it's not over yet.) What knowledge and experience can we gain from this that would help others who might not have the support system we have? I don't know the answer yet but with God's help I'm going to find it.

I didn't mean to come here and get all mushy and sentimental on you guys but this is real stuff. No matter how much we might wish it other wise, our lives will never be the same again...why try to change something you have no control over when you can turn it into something positive and useful to other? I know it's cliche, but we'd really like to leave the world a better place than it was before his happened to me & Rion.

Ok, enough of that! I wanted to leave you with some pictures I took yesterday while me & Rion were having our day of celebration.

First, here is Rion holding his certificate of completion that the radiation oncologists office gave him- it's personally signed by every single doctor, technician and office staff at the treatment center. I know everyone gets one, but still, it was a very nice personal touch!

Here is Rion modeling his radiation mask that he's worn every day for treatment. It's hard to tell from this angel but it has screws on the top & side that actually attach it to the table so he's held in position while receiving radiation (very important if you don't want to accidentally radiate the wrong part of your brain.) This was custom made for Rion using a mold-able plastic and I won't even get into how much it costs LOL

and last, here's Rion right after we shaved his head and gave him his new hair do. He has been looking forward to getting to do this so the spots where his hair fell out wouldn't be as noticeable...now all he needs to do is get a little sun on his head because it is quite white

Last Doctors Appointments Tuesday!!!!

YAAAAYYY!!!!

We had our last scheduled appointments with both oncologists today and everything went pretty well.

First was the medical oncologist, they drew blood to test platelets, white blood cells & hemoglobin- the only bad news was that Rion's platelets have dropped to 80 (115 is the minimum they would like for them to be.) However with the chemo ending in 6 days we agreed with the doctor that it would probably be in our best interest to soldier on and finish out these last few days. Rion has to be super extra careful not to cut himself or  do anything to cause bruising and we are to watch him carefully to make sure he doesn't start bruising. But we're just super glad that we made it to the end with no side effects that interrupted the treatment schedule.

I was very anxious to talk to the doctor today about stopping the chemo next week and all of the additional medications Rion is on. Just so you know what I'm talking about here is a list of what  Rion takes:

Every day:
Keppra (anti-seizure)
Celexa (anti-depressant)
Zantac (anti-acid)
Zofran (anti-nausea)
Temodar (chemo)
a generic over the counter stool softener

Monday, Wedneday & Friday:
Bactrim (antibiotic to prevent lung infection caused by Temodar)

As needed:
Oxycodone (narcotic pain reliever)
Klonopin (narcotic anti-anxiety/sleep aid)
Phenergan (anti-nausea)

So far he has not needed the Phenergan but he still takes the Oxycodone almost daily and the Klonopin 1-2 times per week. I knew he would be stopping the chemo after next Monday but wasn't sure about the rest. We discussed it today and since he is going back on the Temodar some time after we visit Duke 4/18, he is going to need to stay on everything except the Temodar and Zofran for now. He would only be off the antibiotic for 2-4 weeks and it just makes more sense to stay on it. We could stop the antidepressant at any time but our take on that has been that it may not be doing anything but it would be horrible to stop it right now & have him get depressed...there is no harm in taking it right now when things are still so uncertain.  Everything else he will continue taking indefinitely until we are done with the chemo and ready to start weaning him off the Keppra...that won't be for over a year though at the earliest.

(Funny random fact: we have one of those weekly pill boxes with 14 slots- AM & PM for each day- and Rion calls it his skittle box because of all the different color pills he takes and when you rattle the box it sounds like a Skittle box LOL)

Next up was the radiation oncologist which we've been anxious to see since late last week when Rion's skin burns got pretty bad. A friend of ours who is a firefighter recommended Rion get a prescription for Silvadene cream since the vitamin E cream & aloe vera gel he has been putting on it has stopped working. The doctor was happy to oblige and agreed that it should help to relieve some of the pain he is experiencing. They cautioned that the burn behind his ear (where it's the worst) is likely to crack open so the antibiotic in the Silvadene will also help to prevent infection. Rion went ahead and picked the prescription up today and so far so good. Here are 2 pictures of how his ear & head looked as of this morning (you can see that that the top & behind his ear is where the worst part of the burn is:)

The other good news from the radiation oncologist is that we don't have to go back & see him again for quite some time!!! Not that I don't like him, but that office is in Athens and quite frankly we are tired of seeing the stretch of Highway 78 between Monroe & Athens so often. We'll schedule our follow up appointment with him either on the day of the last treatment or after we visit Duke & see what they recommend.

So that's all for now...the doctor's and nurses continue to be amazed at how well Rion has tolerated the chemotherapy and radiation treatments- he has gained a little weight & continues to only have minor fatigue occasionally. We are blessed beyond words that these 42 days have gone so well and that Rion has maintained a fairly good quality of life. I personally like to think that this experience is a foreshadow for how the next 12 months on chemo will be. Once we get up to Duke and see a clear MRI I will be able to relax a little more and have more peace that things are going to be ok.

Blessings,

Emily

Doctors appointment Tuesdays

Nothing new really to report from yesterday's appointment with the radiation oncologist (the only appointment we had.) Rion is still doing amazingly well, he does have some minor skin burning/irritation on his left ear and behind his ear but he is keeping vitamin E cream on it which does a great job keeping it under control. We did get the ok yesterday to use hydrocortisone cream if it continues to bother him but so far it hasn't gotten that bad. He continues to have no nausea and a really, really good appetite. His energy levels vary from day to day and even hour to hour but over all he is able to stay really active. We believe 100% that Rion is responding to treatment so well for a variety of reasons, mainly because of his positive attitude & increased focus on a healthy diet...and of course all of the prayers going up for us on a daily basis!

Thanks for getting up with us and our journey. We're happy to be in the home stretch now and anxious to get up to Duke next month to have the MRI and see what our next step will be.

I will also be posting once we have the t-shirts in that we'll be selling in case anyone is interested.


Emily