Francis is Super Mom!!

Click on this link to see Francis the Super Mom!! Such a great story, thank you to WJHG for doing this about Frannie!! She is so deserving of this!! So great to see her, Robert and the boys, I wanted to kiss my computer screen. They are just so cute. :) Congrats to Bray and his wonderful essay. Very proud of you buddy!!

Lois

Thirty-Year Old 'Super Mom' Battles Brain Tumor

**Updated: So the link right above is to the written story, for the video you have to go www.wjhg.com and it's on the right hand side under the "Birthday Club" banner**

A Whole Lot of Thanks from the Brain Tumor Chick!

For the last six months (can you believe it's been six months) I have been navigating through my very own individual minefield. Map? Oh no that would make it WAY too easy...there is no map, no directions, no guide, just me, my family and this brain tumor world. But ultimately it's my battle, not something that even my family can fight for me. The terrain...it's unruly and brutal. This is easily the hardest journey of my life. And that may be the understatement of the decade ;) This very well may be 'the' journey of my life as I am constantly reminded that I will battle regrowth and the very likely potential for more tumors for the rest of my life. At this very moment my doctors and I are keeping a close eye on several spots that could be new tumors or tumor cells. Like I said this is by and far the hardest thing I've ever had to do.

I have recently been reminded that while this is a one-woman brain tumor battle I have an army of supporters routing me on. I cannot begin to explain or express the vast amount of sheer appreciation for the 'love' that has been shown on mine and my families behalf. I call it love because that is all that it could be. Anything less and all that has been accomplished wouldn't have been even a possibility.

The craft-fair...WOW! It is the only word that comes to mind. I can't tell you, all of you that participated (whether you bought or made crafts) how much you have helped me and my cause. The expense of a brain tumor is massive. Not only do we have the actual medical bills but the traveling, gas, food, lodging expenses of seeing my doctors as well. It is an ever-growing debt. I return to Jacksonville to the Mayo Clinic every three months to watch (and it seems like wait) for the tumor to return. I have an MRI and blood work done and anything else that needs to be addressed. Not only are there the medical bills but all of the travelling expenses to go along with that. To top all of that off I have more than a 60% chance a growing another brain tumor, which would involve another brain surgery. All of that does not even include the first surgery. It is immense to say the least and it really hasn't even begun. I'm not telling you all these yucky facts to paint a sob story. I tell you all this only because you all have been overwhelmingly generous with both your time and your wallets and I think it's only fair to know where all of that is going. What it is supporting. Thank you seems so meaningless so flighty but it is what I'm saying. Thank you, thank you, and thank you. You may never know how much you have effected me and my family but please know that you have.

They say there is always a silver lining. I'm not so sure that I buy into that idea. I have yet to find the silver lining of a brain tumor, but (I know there's always a but) I have found some things that I am very thankful for. I'm thankful for the reconnection's I have made with old friends that I had lost contact with. Life gets busy and things get lost along the way. You know who you are and I love you all! Looking back I don't know how I ever survived life without you. You have become an essential part of my life and it feels as if we never lost touch. We picked up almost right where we left off and I couldn't be more thankful.

I am so incredibly thankful for my family. My husband who has taken his fair share and continues to pick up the pieces of this ordeal. He never loses faith in me or our little family and I couldn't have custom ordered a better husband and father. My family, specifically my sisters and my Mom and Dad. You've held me up. You have surrounded me, each of you in your own specific ways. You've done all the things that I either could not or simply couldn't bring myself to do. You've slapped me into awareness and consoled more than your fair share. My in laws, uncles, aunts and Nanny. You've stepped in countless times. You've helped with the kids...you've kept me sane...you've done so much more than your part, so much more than I could have ever asked. My friends who have stood by and not wavered. It's true what they say, wait till the hard times and you will see who your true friends are. I have unfortunately have had some friends that have chosen not to ride this part of the road with me. In all honesty, who can blame them. I might would run from all this brain tumor crap if given the chance. It's an ugly thing, it is so not pretty. It's horrific and terrifying. It's not fun or exciting or even interesting. I now know the definition of a fair weather friend and that's ok too. The cool thing is, is that I now also know who's in it for the long haul with me and let me be the first to say, that is commitment people ;)

Lastly but certainly not least my kids. My rockin' awesome, unbelievable, coolest kids ever. I have spared them the ugliness of all this as much as possible. But let's face it, they have seen so much more than someone their age should. They are troopers. They have been juggled from home to home, scared, had understanding way beyond their years and have been both kind and selfless. All things that you rarely see in a 9yr old and 3yr old. This brain tumor thing is very unfair to me but even more so for them. Their life should only be consumed with kid things but that is not their lot and they have handled it like a champ. My son Bray recently submitted an essay to WJHG TV for Mother's Day and why he felt like his mom is a 'Super Mom'. I had no idea and that's why this morning when I got a call from a friend to tell me I had won I was in complete shock. Me 'Super Mom'?! I feel so far from that. I have had to spend so much time focusing on things other than my kids that this award seems so unlikely. But here it is...the WJHG winning essay for 'Super Mom of the Year'.

My mom is unbelievable. She's a stay-at-home mom and works SO hard. I go to Cherry Street Elementary and my mom is always there. She volunteers for anything they need help with. Whether it's copying office stuff or helping in the classrooms or planning parties she will help with anything! What really makes my mom special this year is that she is recovering from major brain surgery! She'd been having horrible headaches for about 2yrs but mostly hid them so we wouldn't know how bad she felt. When she went to the doctor we found out she had a little bigger than a golf ball size brain tumor. We were all very upset. My mom though, she stayed so positive. The very next day she was sewing Halloween costumes and making the best of things. Soon after we found out about the brain tumor she began having small seizures, she always made sure that we didn't have to see any of the bad stuff. She made a blog for my brother and I to read when we're a little older. It's of her diary entries so that just in case she didn't make it we would one day know how hard she fought to stay with us. I've only read some of it (I'm not old enough yet) and she is so strong. It makes me love her even more. She had surgery November 30th 2009 and has had a hard time recovering but she once again has not let that stop her. She has stayed positive and made sure my brother, myself and my dad haven't gone without. My mom has shown that she is my hero. She constantly shows all of us how much she loves us even through all that she's been through. This year I almost lost my mom but she stuck around for us and showed us how to fight hard with dignity and that's why she is the best mom ever. I love her so much! Her blog with her diary entries is www.mybrainegore.blogspot.com. Read it and you will see how wonderful she is!

Thank you

Bray Spann

This kid of mine is the unbelievable one. How awesome is that?! Now since we don't allow Bray to get on the computer alone I know he had a little help (Thanks Robert). I could not have had a better day than to learn this is what my son feels. I will treasure this forever. WJHG gave us a beautiful framed Paul Brent picture, a gift certificate to a local seafood restaurant and a gift certificate to a florist. Again...WOW!

It is safe to say Mother's Day came early for this Brain Tumor Chick!

The God's Honest Truth!

The honest to God truth!? When I began this journey with my pen and journal in hand and massive brain tumor in my head I committed to telling the honest to God truth. I committed to take you all along on my journey where ever it may take me. I committed to harsh realities, to posts that were so hard to write let alone read, to make this my record...my words...my experience. At the time this all began, I must admit I never imagined my words becoming a blog. Harsh as it may seem I imagined dying on the operating table. I imagined my brain tumor winning. It was inevitable to me. The tumor was huge. I couldn't comprehend how my brain could possibly survive that. Prepare for the worst and hope for the best. I guess I sort of adopted that. I thought these words would be read long after I had become only a dusty memory by family. When I was swimming with the fishies, so to speak. When faced with such harsh realities and not knowing the prognosis there were so many things I wanted to say, so many things that I wanted my children to know. I wanted there to be a record of my experience so that if all that I imagined came to pass, one day when they were older they would understand how very hard their mother fought to stay with them. And I wanted to show them I fought with grace and dignity and with everything in my being.

After my journal entries became a blog this record changed in my mind. It became a peek into my brain tumor world. A peek into what I was going through and what I would go through. It was a way for me to ‘talk’ about it without having to ‘talk’ about it.

I have a hard time admitting when things are wrong. For the two and half years I suffered with the EXTREME pain of Egore, I will have to say, no-one was the wiser. Every once in a while, when I got caught in gripping pain I just pushed it off as merely 'sinuses'. Even when it became everyday, no-one knew. I hid it all. Not by some nobility or strength...just simply not wanting to be a whiner. I didn't want to become that. I didn't want to get left behind because I didn't feel well. And I definitely didn't want to be coddled. I was simply way too busy experiencing raising my beautiful children and exploring our beautiful world together to acknowledge a stupid migraine. Why would I want to get in the way of life. In all honesty it didn't even register that something was wrong for a very long time...I guess the lying to myself worked well too.

My sisters could tell. The doctors described me as being 'dumbed down'. Yes that's right they said it right in front of me...I was taken aback. I wanted to scream..."You do realize that I can hear you, and that's really not very nice". As much as I hated the term, it made sense. I found myself unable to find words. I would lose concentration VERY easily. My sisters say that we would be gabbing on the phone and then all of the sudden mid-conversation that would be it for me. Mid-sentence I would have no idea what was going on. It was all very surreal and very very strange.

I was worried about that going into surgery (amongst oh so many other things). I worked very hard for my 'smarts', I definitely didn't want to remain 'dumbed down'. Like everything else it could really only go two ways...really good or really bad :) I was very lucky and blessed that in that respect it went really good and I'm happy to report that I have all my 'smarts' back. I no longer trail off during conversations and no longer feel like I can't hold concentration.

So here's the God's honest truth...here's what I've been avoiding telling anyone. I am physically changed. This was the thing (other than death of course) that I feared the most. I have ALWAYS been a really active girl. I danced all of my life and have never been without a gym membership. The few years of my life that I wasn’t quite as active were, looking back, the most miserable. It is a part of me, of who I am. It's never really been a vanity issue for me (although I have enjoyed those benefits of staying fit) it's just simply been a way of life. I biked, I kayaked, I hiked...you name it if it was active I was in. Even now it's so hard to write those things in a past tense. Although I thought I prepared myself for possible changes I never imagined I would be unable to do the things I loved. The bottom line is, for the past several months, that has been my reality.

I've had so many questions about how I am post-surgery and while I haven't intentionally lied it's been SO much easier to just give the basic answer. "I'm doing well, getting a little better everyday". How I wished that were true. I figured that's what people wanted to hear. Did they really want to know the reality of how difficult it has been, about how difficult it continues to be...hell, I don't even want to know the reality of difficult it has been and still is.

So it's only natural when people found out I was in physical therapy there was a lot of confusion. "What I thought you were OK?" Nope, nope I'm not.

I have lost the ability to use my left arm. There it is. The truth sometimes just sucks.

I can move my left arm (it doesn't lay limp), I can grab things and anything lighter than say my cell phone and I'm good. Anything heavier than that and I'm in A LOT of pain. If you were to see me in a typical situation you would never know it. That's how I got away with hiding things, once again. I wanted to be well. I wanted to be well with everything inside me. I wanted more than anything to get back to normal. Heard of 'fake it till you make it'? I think that maybe that's become my mantra.

The pain is in my shoulder, neck and mostly in the side of my face. That would be why I have to have physical therapy on the side of my face. Evidently the nerves and muscles that had to be cut to remove the tumor are all somehow or another connected to my arm...or better yet my arm and shoulder affect those muscles. As well as working on the side of my face I work strenuously to strengthen my arm. It took a while to figure all this out. In the beginning, right after surgery, my entire head and face hurt so bad it all blended together. It wasn't until the rest of my head began to heal and be less painful that the realization that the excruciating pain I was still feeling was taking place only when I used my arm. That was a sickening realization.

It is a part of my journey that I have hated the most. I rarely allowed myself to become angered about Egore. There were those moments, but I kept them few and far between. But this, this arm has angered me, it’s saddened me, and to be completely honest I’ve caught myself wondering why. Why in the world would I be challenged in this way…was Egore not enough. The pain that I already endured from him not enough. Evidently not. Evidently there was more I needed to learn.

Physical therapy is one of the hardest things I’ve ever done. I know that sounds silly but let me explain. The exercises, I can handle, I welcome the burn of knowing that I am strengthening muscles. What I didn’t welcome was being in so much pain that most days I couldn’t even take care of my children (big thanks to Nana, Tanis, and Nanny for stepping in) and to top it off the pain lasted on average for about 24hrs. and then it would be time to go back to PT for more. I was seriously like “what the hell”! It was hard knowing what was going to happen was going to be SO horrible every single time and having to gut it up anyway. My limits for gutting up were pushed. It really was devastating.

The pain continued in that way for the first 4 weeks of PT. That’s right people I said FOUR WEEKS! My spirit was heavy to say the least. I was worn. Egore was wearing on me in a big way! The pain was just more than I can even describe and no amount of pain meds seemed to take that away. I was sinking and fast. You have an evaluation with your therapist every 3 weeks where she/he looks at your progress and you decided whether to continue with therapy. I so wanted to scream…”I’m out of here lady” but I knew that wasn’t the answer. So very grudgingly I said “Yes we’ll continue”. She was great. She tried her best to keep me looking forward to recovery rather than focusing on the present because the present was very bleak.

I FINALLY turned the corner around week 5. HALLE-FREAKING-LUJAH! I don’t know how much more I could have taken. It slowly became less painful. It was like a switch had been pulled and my therapist and I really started to make progress. I think it was a hallelujah moment for her too. I think she was a little tired of inflicting the pain. I wish I’d know where that stinking switch was all that time, because trust me I would have done most ANYTHING to be done with the pain. It just could not be my reality, I would not accept it.

In the last few days I have finished PT. She called it my graduation…which I loved. It gave the sense of importance to the event that I thought it deserved. I still struggle. My left arm is something I continue to have to work on, to strengthen and to be pain free with. I use bands to strengthen and improve my range of motion. This, just like Egore, will unfortunately be a very long journey.

I’m learning. I’m enduring. I’m surviving what no one should ever be asked to survive. Best of all I feel like I’m living a little now too. I’ve said it before and I will say it again…I WILL BEAT THIS! Egore will not win.

The God’s Honest Truth was hard to say out loud (or type) but I felt like I wasn’t being true the journey. To share it all. That’s my promise from here on out…Always the God’s honest truth.

Ok guys, it's finally time for the craft fair!!!!!!

Starting this Thursday, April 15th we will have 140 items for sale on this website:

http://www.etsy.com/shop/haleyuns

Items range from $3 and up! Here are just a few items we have: A photo session from the lovely Tori Piercy, Jewelry, tons of amazing crocheted items, scrabble tile necklaces, I-spy childrens bags, hair clips for little girls, appliqued onesies, blankets, travel holders for your curling iron/flat iron, scarfs and a whole lot more!

Please forward this info to your family and friends through your blog, email, facebook, carrier pidgeon, whatever! :) Spread the word!

Thanks,

Lois

**On a side note, a sincere, heartfelt thank you to everyone who has prayed for my sister and our entire family. We really have felt your prayers and are so grateful for them**

CRAFT FAIR FOR FRANCIS

The Craft Fair is coming up quick! It's going to be April 15th and run for a week on my (Lois') Etsy site. Please leave a comment if you are donating to the sale, I need to send you some information. Thanks!!

*exact website is coming soon*

Life in Construction Land with a Brain Tumor Chick

So I'm thinking that we have completely established that brain tumors change your life in more ways than one :) Pre-brain tumor there were big plans to add onto and remodel our itty bitty little house. This was the 2nd attempt at such. We had our plans drawn up, we had made all the big decisions and BAM brain tumor land hit. So after all that we've been through we have made the mature, reasonable, tragic and heart wrenching decision to put such plans on hold till we find out what old Egore is going to do next. So after I got off the floor from kicking and screaming (just kidding but I wanted to) I decided that there were a few things I could do in the meantime to make the house a little more 'livable' that would not break the 'Egore' bank! I swear even after his extraction he rules our life :)


My first idea that I put into action was to swap rooms with my kids. My room is larger and lets face it...I have no cars to play with and no GI Joe men to spread out everywhere so since they are now sharing a room I would give them the larger room and we would take the smaller. I say that this is a bright idea only because Robert just painted the boys room a very 'boyish' grey at my request about 6 months ago. If you've ever been to my house you understand that painting a room is not just painting a room. We have solid pine paneled walls that you will see in the pics that follow. There is detail work between each panel. It's about a 75 yr old house that I really do love but the original owners got the bright idea that staining all the wood in the house cherry red (including the hardwood floors) was a WONDERFUL idea! So literally after Robert and I got married and I moved in, EVERYTHING from the walls to the floor was CHERRY RED! One word...YUCKO. He thought it looked very 'beach shack'...hilarious! It was more like 'dungeon shack'...really. One of these days I will get brave and post pics of our old room that I am about to paint for the boys so that you can fully understand what I'm talking about. Anyway, I had him paint the boys room 6 mos ago. That entails sanding the solid pine walls, priming them, caulking any rough spots in the pine (knots and such) priming again and then finally the paint which you first must apply with a brush to 'properly' get into all the grooves of the panelling. It needless to say, is no simple task! So the thought of redoing it was a little crazy! :) Did I mention I just had brain surgery :) But I could not live in a very boyish painted light grey room...that was certainly not suitable to my healing needs :) he he!


So I got the GREAT idea that although I am still recovering I'm going to re-paint the boys old room before moving into it, a more pleasant, little bit girly, color...soft aqua! Yes I said soft aqua. It's my quirky fun loving, truly beach shack (not dungeon shack) style! So...without any further ado....I finished it! Yes it took me like 2 weeks OK maybe 3 weeks of off and on working(I still can't use my arms a whole lot without bothering that muscle on the side of my head, so it makes perfect sense for me to painting a room :) but I did it. And it's beautiful! It is the perfect shade and very relaxing for my 'healing needs'.

And yes I painted the hardwood floors too. Most of you can pick your jaws up off the ground now :) I really did it. Most would not like that, me on the other hand, love it. The floors were damaged from a few stints of carpet over it and considering that we intend to add on in a few years, depending on old Egore, and replace all the flooring with new hardwood that will flow throughout the house it was simply too much work to completely restore these. So I decided to do something fun with them that I would probably never have the opportunity to do again. I really do love it. I like the scratches and scuffs that come with it over time.

I'm almost all moved in to my new room and taking extra care to make it extra organized. You just never know how organized you need to be until you spend a lot of time away or have major surgery, it really helps when others are able to find the things needed! :) Somehow they didn't love the hide and seek game :) I can't take too long because...I'm not going to lie...my living room is filled with the boy's stuff until we get my old room cleaned out. Hoping to have that remedied by the weekend. Scratch that...NEED to have that remedied by the weekend in order to preserve all sanity in the house :)

Now I have to start on the boys 'new' room...my 'old' room. That is going to take a little longer! It has not been recently painted so all the prep work will have to be done. I think I will enlist help on this one! I don't know...I start Physical Therapy for that muscle on Thursday so who knows, maybe painting can be incorporated into my therapy :)

Physical Therapy, aside from the ability to do more painting, is exciting to get started on. Just one more adventure in the recovery process. Anxious to get it going and get done and feel 100%! The muscle that's giving me grief runs along the edge of my face. It's kind of comical to think of getting PT on my face. On Thursday I get an evaluation...of my face...here's hoping I pass that one :)

FRANNIE'S CRAFT FAIR!!

Hi Everyone! It's Lois, the little sis.

Well, it's been a long time coming but I have finally set a date for our "CRAFT FAIR" we are having on APRIL 15th! We have a little over 2 months to prepare! If you would like to submit something, please email me at haleyuns@gmail.com or leave a comment. Any craft big or small will be appreciated and help!

Here are some photos from her 1 month checkup at the Mayo Clinic......


Francis and Her Surgeon

Francis telling Robert that the results came back BENIGN!