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

Only 2 weeks to do

2 weeks from right now and we'll be done with radiation (hopefully forever) and done with the 42 consecutive days of chemo. We pray these last 14 days fly by and Rion experiences no new symptoms!!

T-shirt order

Ok folks- I am finally ready to order t-shirts that Rion and I will be selling as a fundrasier and to raise awareness for brain cancer. The shirts will be dark gray with light gray designs on the front & back. We will be selling them for $15 a piece.

The shirts will have our blog URL on the back so they will help us get the word out about what we're personally going through as a young couple dealing with cancer (something that there is suprisingly little support for.) Additionally they will hopefully be a good conversation started to educate folks about brain tumors/cancer in general...I  knew way too little going into this and would love any and every chance to educate someone so if they are faced with a similar situation they won't feel so lost & confused.

So, here is what I need from you- if you think you might want to order one of our shirts please, please, please let me know what size you will want. You can e-mail me (gahendersons at yahoo dot com- remove the at & dot and replace with the appropriate punctuation,) send me a Facebook message/comment, text me, call me, etc. The only thing I ask is that you not give the information to Rion- he kinda has enough going on right now and doesn't need anything else on his plate.

That's it plain & simple- I am hopeing to get a general idea by Monday so the sooner the better. We will also be selling the gray brain cancer awareness bracelets that will say "Beat Brain Cancer." They are one size fits all & will be $3 a piece.

Thanks everyone!

Emily

Doctors appointment Tuesdays...

On Wednesday...oops!

This week just hasn't been the best one for me- nothing specific just feeling very, very stressed. Yesterday I literally rushed from every single event during the day to the next one without feeling like I was really doing a good job at anything; when I'm stretched this thin it's hard for me to be a good wife/friend/caregiver/employee because I am overwhelmed with all of my obligations. But I digress, this post isn't about me throwing a pity part but instead I want to update everyone with Rion's progress.

First of all the good news: WE ARE HALFWAY DONE WITH RADIATION AND THE INITIAL CHEMO REGIMENT!!! Rion had his 16th radiation treatment yesterday and only 14 to go. April 2nd is his last day of chemo/radiation so we are on the homeward stretch now. The side effects are still very, very minimal- he has lost some more hair and continues to have fatigue some days but over all he is doing so much better than we expected. Here's a picture of his head to show how much hair he has lost:

Many people have suggested that we shave his head completely so we asked the doctor about it yesterday and he recommended that we wait- the reason being is that Rion has to wear a very tight, form fitting mask while he receives radiation and the mask may not fight right if he shaves his head. It may seen like a very minuscule size difference- 1/2 shaved vs shaved head- but the radiation machine calibration is VERY sensitive and the last thing we want is for Rion to receive radiation to the wrong part of his head. So we've decided we'll have an official head shaving ceremony on April 2nd to symbolize the completion of this phase of treatment. At first Rion was pretty insecure about the hair loss but I think we've both just put on blinders and quit noticing the stares that we get when we're out. He tries to wear a hat but it causes a lot of irritation and itching so normally it's better if he just goes bare headed : )

There really isn't too much else to report from our appointments yesterday. The medical oncologist did routine blood work and all of Rion's levels are right where they need to be. We don't go back for blood work again until 3/27/2012. We have received our 2nd shipment of chemo and have all of the medications that we need to finish out the schedule. Oh, I just remembered something! If you're around us for any period of time you'll notice that our cell phone alarms seem to go off constantly; that's because we've found the best way to remember for Rion to take his medications is to set an alarm. His cell phone alarm goes off at 8:30 AM (regular AM meds,) 10:00 AM (chemo,) and 12:30 PM (anti-nausea meds) and then my alarm goes off at 8:30 PM (regular PM meds) when I'm usually with Rion. It makes it so much easier and I'm not constantly asking/reminding Rion about his medicine. It would have been nice if someone had suggested this to us from the get go instead of it taking us a month to figure it out. But either way...if you have a lot of medicine to take, set alarms so you don't forget!

We didn't cover anything else with the radiation oncologist except for asking about the hair cut. Both Rion and I found it funny that the doctor seemed to expect us to argue with him when he suggested we don't shave Rion's whole head yet. I guess he must get a lot of patients that ask for advice/permission and then argue when they don't get the answer they want. Well not us! Rion is always complimented for being such a good patient but to us it's just common sense- these people are doctors for a reason and as long as what they are telling us makes sense we don't question it and just do as we're told. Just a funny little thought I thought I'd share with everyone.

So that's it for now. Still plugging along and taking each day as it comes. It helps that we have established a pretty normal routine so life is fairly smooth & predictable these days (save for days like yesterday.) As much as I hate Rion having cancer, I love how happy we are with each other and our lives in general and how we have been able to finally find peace and acceptance with the diagnosis. We look forward to the next MRI in April and hopefully not seeing any new growth around the resection cavity where Morton was evicted!

God Bless,

Emily

hair loss

Well yesterday Rion started experiencing one of the more noticeable side effects of radiation- his hair started falling out. We have known this would more than likely happen from the beginning, that's why he went last Friday and had his hair cut really, really short. But still, to pull out finger fulls of hair is really hard to deal with, harder than we expected. Rion was really bummed out last night and had a hard time sleeping because he was so upset. We used some tape this morning to even it out a little bit so it wasn't so patchy and instead he has 1 prominent spot and then it's just really thin in the other areas. Here's a picture as of this morning

We know it's probably going to get worse. The hair inside of his incision and directly behind it in the back is barely hanging on and comes out with the slightest amount of pressure. I'm glad that today is Friday and Rion gets 2 days off of radiation over the weekend.

Please just keep us in your prayers- Rion to find peace and acceptance and me to know what to do/say to make him feel better. We know he could be suffering from far more extreme side effects that could zap his energy and leave him sick all the time. But the hair loss is a constant reminder that this is real no matter how hard we try to ignore it.

Blessings,

Emily

Doctors appointment Tuesdays and good news!

Today was our weekly meeting with the radiation oncologist and we also happened to have an appointment with the neurologist. We haven't seen the neurologist since right after we got the pathology report but had yet to go back to Duke to figure out our treatment plans.

Everything went really well today. The neurologist let us pass on doing blood work and instead gave us an order to give to the medical oncologist we will see next Tuesday. They are going to draw blood anyways to check red/white blood cells, platelets and hemoglobin, so we'll just let them draw to test his keppra levels, liver & kidney enzymes and then send the results back to the neurologist. Rion was so disappointed to not get stuck today after I had told him he probably would LOL He actually mentioned today that he's getting so desensitized to getting needle sticks/blood drawn that maybe he'll even give blood when this is all said and done. That he would even say that is a testament to how much work God is doing in our lives these days. I can't remember the people we were before 11/21/11 but some times I don't want to!

Same good news for the appointment with the radiation oncologist. Rion has gained a very slight amount of weight which is perfectly ok and very rare for people going through chemo & radiation. We firmly believe it's because he stays so active (if at all possible) and eats really, really healthy 90% of the time. So far he has no side effects from the radiation; his incision itches sometimes but that could very well be from the normal healing of the incision and not irritation from radiation. Today was his 11th treatment- we are 1/3 of the way done and next Monday will mark half way WOOHOO!! I still have my pessimistic feelings that something bad is still to come but maybe God is going to use this opportunity to prove me wrong and show me why I should have more faith...hey, I don't mind being wrong & humbled if it means Rion gets through this whole 42 day regiment feeling good!

The other good news I wanted to share is in regards to one of the financial aid programs we applied for. We were contacted by the non-profit organization last week who actually got us in touch with Merck, the drug manufacturing company. Merck has agreed to pay for 100% of Rion's chemo cost for this 42 day regiment (including the $480 balance we have for his initial prescription fill!!!) They are sending us the paperwork to complete to get the next 12 months of chemo covered also and seem optimistic that it will work out. That totally made my day today to come home and find Rion beaming with the news that he handled getting all of this orchestrated for us. God is good!

That is all I have for right now- life is moving along as normal as it can right now. I am still working full time except for on Tuesdays when I take Rion to treatment/doctors appointments. The other week days he has been able to find enough family & friends to volunteer that we haven't had to get in touch with any church groups or volunteer organizations to ask for transportation assistance. We both continue to marvel at how truly blessed we are and how lucky we are!

God bless!

Emily & Rion