Overdue meltdown

It's been a long day, truth be told its been a long few months. I had to take a leave of absence from the blogging world to get myself straightened out a bit. After losing my mom all I could feel was an overwhelming sadness, so when we got the news last month that Brinley's spinal fluid was clear of cancer cells, I literally felt nothing. I wasn't sad, or happy for that matter, I was absolutely exhausted, mentally and emotionally spent. After a 3 week visit from my dad I was able to heal a little, just enough to collect myself and move forward. I still miss mom though, there is not a single day that doesn't go by where I don't wish I could hear her voice, or speak to her, and in the mean time, I'm trying to fill that void with my own voice of reason; which brings forth the saying, "what would momma say?" I imagine this will go on for quite sometimes, so I'm adjusting...a woman in progress.

Last week Brinley broke her arm by falling off of the high part of the baseball bleachers, approximately 7-8ft, straight to the compact dirt below. After being examined, and x-ray'd the results were in and she had broken both bones in her arm...and she's lucky that is all that happened. So early this morning we were out the door embarking on our appointment journey for the day, orthopedic surgeon (no surgery needed), neurology, and oncology. Wait! why is Brinley seeing a neurologist? I'll get there...

During her last lumbar puncture, the doctors checked the pressure in her spine, normal pressure range for her is 10-15, and Brinley was 35. Because of the frequent sharp pains in her head, her oncologist thought that maybe it would be good to have her checked over with a neurologist.

We check into neurology, and had to wait a little bit because I'm always running early. Brinley hates to wait, and she's been up since 6am, and knows that she's about to go into two more appointments where she will be poked, prodded, and asked to do a series of tests. After being called back into the examination room, we go over the questions on the forms I filled out, the nurse does the typical vitals, weight, temperature check on Brinley, and then she hits the wall. She's DONE. This is the second time Brinley has lost her cool about being at the doctors. The first time was when she was first diagnosed, and we had just left the hospital after being stuck for 2 weeks, we had one day at home, and then had to head back the following day for chemo. She wasn't having any of it that day, and she wasn't going to deal with it today either. She sobbed, begged and pleaded for me to take her home, "no more doctors, I'm just so tired of this". I've always bragged about what a trooper she's been through treatment, the countless appointments, needles, tests, she's been amazing through the whole 2 and a half years. Her meltdown point is LONG over due. Eventually she curls up in my lap and sobs while I brush the tear soaked hair away from her face. My baby is exhausted too. After calming the storm, we proceed with the appointment and her neurologist wants a high volume lumbar puncture done on Brinley, ASAP. She's not convinced that one negative test rules out CNS relapse, the more fluid they test the better chance they have at finding something, or confirming that nothing is there. If the test come back negative, Brinley will begin medication for pseudotumor cerebri. The medication will not prevent her headaches, but it will stop her from going blind. Because the brain thinks there is a tumor (hence pseudo-tumor) she runs the risk of her optic nerve failing. So the new medication will help adjust the pressure, therefore giving the optic nerve a break. This medication will have to be taken daily, for the rest of her life (more than likely). The condition is a side effect to leukemia, and/or the use to steroids (which she's had).

So in short, she will either relapse, or run the risk of being blind.

Thank goodness for modern medicine.

We were all ready and set for tomorrow morning, but because they are doing a high volume test they aren't really prepared yet. So next week Brinley will go in for another lumbar puncture. And so we wait...

what else is new?

picking up my pieces.

I haven't blogged in a little bit, life simply got in the way. And by life, I mean someone took my life, shook the shit out of it, flipped it upside down, spun it around and shook it again.

February 14th my beloved, most amazing mother took her last breath, with my dad holding her hand.

It still feels very strange to say that my mom has died.

Allow me to fast forward a little bit...

On January 30, to the 4th of February, Blake and I took the kids on a top secret trip to Disneyland  The spontaneity that spurred the trip was Brinley's pending relapse. We wanted to get away and escape before being tossed into another 2 year boxing match with the ugly cancer beast. So we high tailed it out of Arizona. The proper arrangements were made, we had a good friend watch the house and dogs, and secretly packed their bags while the kids were in school.  Brinley originally thought we were going to the hospital in the city, and because she understands that her cancer is coming back, this is not an "out of the ordinary" request.  Once we had them settled in the car and about 45 minutes out of the city, both kids glance up from their iPads and say, "uhhh where are we?" To which we pull over and announce "SURPRISE! We're not going to the hospital! We're taking a family vacation to Disneyland" which is followed by ...silence. Carter is processing, and Brinley doesn't believe us. Do we really trick our kids that often?  As the reality sinks in, Carter began to bounce up and down laughing....while Brinley is left standing there saying, "noooo....noooo...we're not going...are we? for real? Nooo you're trickin' me again".

About 15 min down the road she squeals with delight, "THANK YOU MOMMY AND DADDY". There it's all sunk in, we're all happy, and now we have to try our best and cope with, "when are we going to be there?" every 5 minutes for 6 hours.

We spent 3 amazing fun packed days in Disney. We were able to cut lines due to Brinley's cancer, it allowed her to have a "guest assistance" pass....just a fancy VIP ticket. No 3 hour wait for the "cars" ride, 15 minutes and we're in!

Disney was good...it was needed.

Sunday before we got on the road I figured I would call my dad to check in, Saturday he had mentioned that they had done a CT scan on mom, and I was anxious to find out the results.  The results weren't good, something had happened and there was significant shadows showing up on her brain. Later that night after I had gotten home, I had found out that mom had 3 major strokes. Not good.

Monday as part of our routine for the last 2 months I call dad for our morning skype and coffee session. He's been at the hospital since 3am, mom had a heart attack.

A few hours later mom's doctor had called to tell me that with the blood clots in her head, and heart, mom's lungs are flowing filling with fluid, she will not survive this. It could be hours, at most a day or two, but the amount of damage done to her body is un-repairable.  I took the news as matter of fact, and as the conversation with her doctor began to come to an end my voice started to crack, my mom would indeed die and leave me, and at the risk of sounding cliche...I wasn't ready, I wanted more time, I still needed her.

She died early Thursday morning.

It goes without saying that my mom meant the world to me. She was my crutch, and my "just because" phone call. To have it all pulled away from me feels like a cruel joke, simply saying I miss her, doesn't seem to cover the layers of grief I have right now. At times I'm angry because I just want my mom, I need to hear to her voice and I can't. I'm angry because I feel that she was cheated out of a long(er) life, and she deserved to have a beautiful long life. There are times where I cry so hard that I'm sure I will never stop. I just want to stop feeling so sad, and it's frustrating because I don't think that will happen for a while.  I also have become an expert at protecting my dad and his feelings. I know he's heartbroken, but I'm so afraid to show him that I am too. I feel this need to be brave for him, to set my own grief aside and help him figure out life without her. Because when I cry, he cries, and then I feel bad for making him cry so I swallow the lump in my throat and force a smile.

The worst is the anxiety. Whenever I think about my mom, her last months/days/hours a nervous feeling overwhelms me. I can only describe it as a hallow echo, as if my torso is made of tin, and every time my heart gives off a beat it ping pongs around my chest, bouncing off the sides causing this rippling effect that rattles my entire body.

I'm fortunate that I have no regrets with my mom, I knew she loved, me, and she knew I loved her back. I have so many beautiful memories of her that I'll never forget, but most of all I will never forget the way her voice sounded when she said, "I love you".

RIP  Mom, I'll love and miss you always.

As a side note, Brinley's lumbar puncture was on the 12th, she did not have enough cancer cells or white blood cells for a diagnosis. She had 3 leukemic cells, and 3 white blood cells, you need over 5 to begin treatment. She will have another lumbar puncture March 12th. The doctor as told us, "she will relapse, it's just a matter of when, it could be months, it could be weeks, but the foundation for relapse is there, we just need more cells."

Time to create some memories.

It's been a busy few weeks, which has been to my benefit because I've been able to focus on stuff, and not just, "has my kid relapsed?".  Last week my best friend came, she always manages to swoop in and give me encouragement  and she doesn't judge. I can talk about the ugly details, my worries and concerns, and I don't have to clarify, or worry that she thinks I'm crazy, she get it.

She was so pale

Brinley has been experiencing some sharp pains in her head, which ended her back in the clinic because she was very pale. Her blood counts were good, and I was able to chat with the oncologist who discovered the leukemic cells in her spinal fluid. He did let me know that more than one pathologist had confirmed they were cancer, and that cytogenetics more than likely won't have answer for us, but that was to be expected, I didn't have high hopes resting on cyto being able to confirm the cancer. In one week we'll bring Brinley in for a CBC and then on Tuesday (the 12th) she will have her LP and BMA (lumbar puncture, bone marrow aspiration). Her oncologist figures we will see more leukemic cells in which case we can skip over cytogenetics. He thinks it's just an isolated relapse, which is good, it'll be hard on her body, but the out come is very good. It's just a very long 12 months of chemo.  I still can't believe I'm even blogging about this...ugh.

The next little while we are in limbo, we're not sure whether we truly celebrate off treatment, or if we prepare for the next chapter in this cancer battle...in any case, Blake and I figured this calls for a trip to Disneyland. It could very long time before the 4 of us get quality time together. Wednesday, we'll get the kids from school at noon, and make the 5 hour drive to California  They have no idea, we've told them that Brinley has an appointment in the city, and we have to take Carter because we wouldn't be home in time to get him from school. So from Wednesday to Sunday we'll be in the happiest place on earth, trying to take in every happy moment.

Here are some pictures from Brinley's recent photo session with The Gold Hope Project.

Let this be the end.

I can't believe we've made it to this point, looking back over the last 2 + years I felt such a pit of helplessness when the oncologist told us the duration of treatment. How will we ever survive this? She will be 6 years old before she ever gets to experience a normal life again. She will be 11 years old before she will ever hear the word cured.

I often daydream about that day, the day I will feel the need to truly celebrate, the milestone every parent, wishes, hopes, prays (whatever your comfortable with) for. Your child is cured. Such heavy words, words that we hang on to, a word we whisper to ourselves at night before we close our eyes and try to sleep. A life that seems unreachable, and yet we long for it, day after day, appointment after appointment.

I have had nightmares about a day we take Brinley in for her regular check up, and her counts are low and bottoming out, and maybe we need to look at the bone marrow. I can tell you now that in my dreams, I've handled things much differently than how I've handled it during the last few days.

 The word relapse to a parent is indescribable  It's flashbacks of everything your child has been through, the fights about medication, the tummy aches, hair loss, bone pain, mouth sores, lack of appetite, and too much appetite  It's the fatigue, and the vomiting  the late night calls to your closest friends and family because you need to scream. It's the tears on the way into the hospital, the early morning coffee with the nurses, the over night bags, and pacing the sterile halls of the oncology floors waiting for an answer. It's the accusing stares because your child has gained weight due to the steroids, and the scowls because clearly you're an awful parent the moment your child has a roid rage. It's the surrendering sobs of a mother because after braving the storm once, she now has to button down the hatches, gather herself and get back on board the cancer ship.

And as I give my daughter her last chemo pill, a moment that should be ceremonious, I feel a small tinge of defeat. She may be off treatment for good...or maybe only for a few weeks. I'm also left thinking that today someone is getting the news that their child has cancer. They are taking that long walk back to the car in a state of shock, asking themselves, "is this really happening?" They will wake up and hope it's all a dream until they realize that their child's chemo appointment is in a few hours.  Someone else will be getting the news that there is nothing more that can be done, and the doctors have exhausted their resources, and that sometimes, cancer wins. Someone will be kissing and holding their child for the last time. Whispering into their ear that they love them, and that it's ok to let go.

So as I sit here and hope that I cancer will not continue to play an active role in our life, the word cancer becomes a lump in another parents throat.

Our little family has been through a lot over the course of 2 years. We've struggled emotionally, mentally, and physically. I've had to learn to let people in, and let them help me because without them, there is no way I can juggle everything, a few balls will fall, and I've had to learn to dust them off and ask for help. I've also had to let people go. Superficial, inauthentic people do not belong in my life, this for me as been a gradual realization. I simply will no longer make time and mentally invest myself on someone I do not value, or does not value me. I've taken steps to keep certain people at an arms length for sanity reasons, and some people I have severed ties completely. When put into precarious situations I think you have to cut some people lose, you weigh in on those who surround you, do they bring positivity to the table? If not, it's time for them to kick rocks.

Brinley has taught me more than I could have ever imagined. The day I had her and looked into those beautiful brown eyes, I had no idea the life lessons she would teach me.  She has taught me that there is a certain grace and ease that comes to coping with cancer. Every treatment, she has faced her fears, refusing to back down or give in. No cancer you don't get to have this diva. She has laughed at moments when I thought I might burst into a thousand pieces. She is resilient, brave, and she is strong. For the last 2 years this has been her life, she is more than comfortable in a hospital, she knows her role as a patient far too well. My daughter has fought such an amazing battle, and for a brief moment, we need to celebrate. And that's exactly what was done tonight. We had cake, ice cream, and sparkling apple cider...cheers to the past...now lets prepare for the future.

My son has learned the gift of empathy and compassion. He is beyond his years when it comes to having a kind and gentle heart. Carter has developed this sense of protection over his family. He has grown to notice the importance of all of us being under one roof, all in sync, all supportive of one another. He is wild, crazy, incredibly funny and insightful. He has missed out on not having his mom and sister 100% of the time. There are times that he would come home with the biggest grin on his face, and a perfect test score, but if this happened to be on a day that Brinley's counts were bad, or she was sick he would end up playing 2nd fiddler, and that wasn't fair. I'm very lucky to have such an understanding forgiving son, all I can hope is that this experience hasn't scarred him in any way.

Blake has been my life line through out this. When Brinley was first diagnosed, I had sat down with my mom and asked her, "how will my marriage survive this?"  It seems like such an off the wall, silly thing to ask now that I look back. How will it survive? You'll cling to each other that's how, because providing a stable and loving environment is the best thing for Brinley. It's because you love each other and can understand exactly what the other one is going through. I can be emotional, and struggling alone inside my head and Blake just knows. He knows not to ask, not to talk about it, but just to hold me, kiss my forehead and tell me it'll be ok...which usually results in me sobbing, wondering how I got so lucky. So did my marriage survive cancer? The short answer is no. The long answer is that my marriage before cancer is not what I came out with. My marriage today is much different after living through the last 2 years, we are stronger than before. We hold the ability to balance each other out, when I feel like I'm going to break, he's very good and bringing back to earth and having me refocus on what is in front of me. He's positive, and is always able to point out the silver lining is any given situation. At times the last thing I want is to hear is the up side, sometimes I want to sit there and be miserable, but it's an attribute of his that I can truly admire. He makes me insanely proud, he is an amazing husband and daddy, and I am so grateful to be wildly in love with this man.

Again, we are so very lucky to have so many amazing people in our lives, and even though we may start this struggle again, our strength and determination comes from our supporters.  And because of the encouragement of others, we're able to pass that off to our daughter. So a thank you to those people who have followed Brinley's journey. It's not over yet, we're just turning the page.

Clarity

Nothing like a little trauma to get the thoughts flowing.

This morning I woke up, well... my eyes opened, and I begrudgingly swung my legs over the side of our bed. I'm pretty sure I didn't sleep for more than a few hours last night, with every turn my mind springs into action and a dozen thoughts go racing through my head all at once. I quiz myself about each phone call, what was said, what I'm unclear about, and instead of grabbing my coffee and plopping myself in front of the world wide web, I pick up the phone.

I called Kate this morning to ask more questions, a lot of repeats, but I had a pen and paper and I was ready to write this down. I'm going to make notes, and stick it on my fridge, and when I'm turning in for the night, I'm taking it with me, and sticking it beside me. You know, for those hours of tossing and turning, its good to have a quick reference. So after leaving a polite, apologetic "sorry, I have to ask you this stuff again" message. I'm able to get the kids (yes Brinley too) off to school, before she calls. The coast is clear, no interruptions.

I have a series of questions, like "could these cells have anything to do with the strep she had over Christmas" "How many cells were there?' "where are they now?" "how was it tested?' "why were her counts so good if we're looking at a relapse?" and of course "what is the protocol?"

So here it goes, at first glace when the oncologist looked at the cells under the microscope they looked abnormal, any abnormal cell is a red flag, it could have been looked at as residue from her body trying to recover from the strep, but pathology did confirm that not only where they abnormal, but they were leukemic cells.  There was a total of 13 cells in her spinal fluid, but only 2 were leukemic, however they pulled 3 vials of spinal fluid, and what they looked at was one single drop of fluid from one vial.  After pathology has confirmed, the cells then go to cytogenetics, and they look at the cell make up, the protein strands, nucleus etc. Given that they have enough to work with, we might have an answer by the end of next week. If not we wait until Feb 11th, she'll have a CBC (typical blood work) and the following day, she'll have another LP and BMA (bone marrow aspiration).

Treatment for this relapse is 14 months. She will have much of the same chemo that she did during her previous treatment, just 10 times stronger. She will start high doses of ara-c and methotrexate, and with those we'll be admitted into the hospital. When she is home she will have to have a hydration back pack. She will also have to have the PEG shots in her legs, 3 within the first 30 days. Everything she's done before, lower doses, but we've done this. What we haven't done is radiation. Brinley will need radiation if this is an isolated central nervous system (CNS) relapse. If it's not, and if her bone marrow comes back positive, she will have to under go a bone marrow transplant, and then Carter will have to be tested since he would be her best match, her true sibling. I asked him about being tested, and it was a simple, matter of fact conversation.
"will it save her life?"
"it could, she would have a better chance"
"no problem, I'll do it."

Maybe that is a premature conversation to have with him, but I've always been 100% honest with my kids. I hate springing things on them, they deserve to have the knowledge and power about what is going on.

So there it is, it's all laid out, and now I have to compartmentalize the information and my feelings. I've had my questions answered, I understand what I might be up against and I have to sort it out. So if that means repeat blogs, so be it...I'm searching around in the dark trying to come to a place of peace.

Just let this be a fluke.

This can't be real

I was never the bitter, angry person, its never been in my nature to lash out, or rage against...anything. I have always pictured myself, calm and collect, level headed, and rational.

I feel like I'm going to flip my fucking lid.

Today I was blind sided (yet again, because once, twice, three times doesn't seem to be enough). Brinley's oncologist called our house. She's never called before, usually it's Brinley's nurse Kate, so it took me a few minutes of hearing her voice over the phone to realize who I was speaking with.  It's really too bad I paused for so long to figure this out, because by the time I had caught up with the conversation, I had missed a few things that we're said, and right around the time my brain clicked I heard, "Morgan, Brinley has blast cells in her spinal fluid"...wait...what?

"What does that mean?" (I know what it means, but I'm lost in translation) It means that Brinley is showing significant signs of relapse. (I can't breathe, I can't feel my legs).

As it turns out, during Tuesday's lumbar puncture, as per usual they take a sample of spinal fluid and test it for cancer cells, because as we all know, cancer likes to hide in the spinal fluid. Unfortunately Brinley tested positive. Her labs where then sent off to pathology, who confirmed what could be the beginning of our new nightmare. They are indeed blast cells. This is when her doctor picks the phone up and tells me it's time to brace myself. During the conversation half of  my brain is screaming "wait, wait wait, I'm not ready, I'm not processing this" and the other half is encouraging my lungs to breathe in air.  Pathology has now sent the sample to genetic "something" (I missed that because all I could hear was my heart), and depending on if they can get an answer off of the cells provided, we should know whats going on soon. But if not, I'm on high alert, looking for signs, the same signs we seen when she originally was sick, vomiting  fever, headaches etc. It's hard to separate all of this, she did just have chemo, so the side effects of that are still raging through her body. Because she had chemo, she will have to wait a month, and then at that time they will perform another lumbar puncture, and a bone marrow aspiration.   I asked Kate, what the odds were that this was just nothing, some fluke cells, an error if you will. She said that she's never seen a case where that has happened (not so that that it HASN'T), but just that she's never seen it for herself. She said that most cases of relapse start off this way, a few cells in the spinal fluid, then it progresses.

Progresses...great.

I told Brinley that instead of celebrating her off treatment with her clinic party, she will have to undergo another surgery...you know what she said? "YES! WOO!" ...I could learn a few things from this child. I told her that they think her cancer might have come back, which means new port, hair loss, sickness etc, she told me that she was strong once before, and now she knows how to be strong again. So in any case she feels ready to tackle this again. 

I don't feel ready, but I know for a fact I can do this again, I know I can be strong for my baby. I don't waiver when it comes to my strength, but it's not fair. It's not fair she has to endure this again. All I want, is for her to be a happy HEALTHY 6 year old...but this is what Brinley knows best, nothing changes as far as she's concerned. 

Until then, I'm going to keep my fingers crossed for an error, but prepare my heart for another long battle. 

Carter giving his sister a snuggle after telling him about the given situation

I can see the finish line.

786 days later and we're finally on our last week of chemo. Tomorrow morning I will bring Brinley in for her blood check, and if she passes, she will go on to have her last lumbar puncture, last dose of methotrexate, and last dose of vincristine, EVER. I can't believe how surreal this feels, that we're finally on the home stretch, and within 6 days, Brinley will not be on chemo, her battle against cancer turns a page and we begin a new chapter. Life outside of cancer land.

 Because Brinley was diagnosed so young, she has no idea what life is like without her body in a constant battle, this is all she remembers, this is what she knows. She knows how to count to three before she has her needle poke, she knows that the chemo makes her sore and sick, and she can request her pain and anti nausea medication by name. She can tell you where the lab is in her clinic, and what her blood looks like under a microscope.  She can describe the tingling sensation she felt in her scalp days before she lost her hair. She can tell you how she feels when she's going under anesthetic, how she can hear "voices" when she's asleep, and how dizzy she is when she wakes up. She can also give you advise on what to order off the hospital menu.

 But my daughter cannot sing her ABC's without forgetting a new letters, and she has a hard time remembering a few numbers between 1 and 20.

We're almost done this race, the finish line is in sight, and now we have to navigate our new life, our "normal" life.

As I'm trying to psych myself up for this week, my heart is heavy. As my daughter's life is about to improve, my mom's health is at risk. I want more than anything, to call her the day after treatment, like I always have, and share my excitement, my concerns, and my anxiety with her.  She's been there, holding my hand, every step of the way, encouraging me, and keeping me focused on the end goal. I can't describe how foreign it feels not to have her  for THIS, the big push, the finale.

I still need her

...is only thing that comes to my brain when I'm faced with the fact that I may loose my mom.  She's been sick since November, and stuck in the hospital with no end in sight. She's been fighting for so long, and I'm terrified that she may be up against a losing battle, and her strength is depleting  My mom has Meningitis, to be specific, cryptococcal meningitis, which is fungal. She's been having problems for over a month now, this on going nausea, vertigo, forgetfulness. Here she's had this fungus progressing each day, infecting her central nervous system, and brain, which is now resulting in seizures, and memory loss. 

Last night it hit me like a ton of bricks, my biggest cheerleader, my off duty therapist may die. She may die before ever really hearing how much I love her, and it's not just something I can tell her over the phone, but something she can hear, absorb, feel, and understand. That her love and affection has molded me into who I am today. She's given me the tools to be a good mom, she's loved me when I wasn't lovable, she's held my hand through the toughest times in my life, and I'm terrified of losing that. I want her to understand how grateful I am to have her as my mom, how lucky and fortunate to have her in my life, even if it may only be for 30 years.  

And while I continue to hold my breath, and wait for the news, good or bad...all I can think is, "You can't go, I still need you."

Mom is all you need.

This last week and a half has been a tough one. Brinley has been doing really well and trucking along as usual, but my mom isn't well. She's been dealing with some off the wall issues like severe vertigo, migraines, vomiting, she's lethargic and nobody seems to know why, or how to fix it. For the last several years my mom has been sick on and off, and for the most part she's dealt with a lot, diabetes, kidney failure, sight loss, cancer, and the kitchen sink. There has been times where I have been far away from her, but I was never in a position where I couldn't hop a flight and be by her side if push came to shove...well up until now. Of course dealing with her being in the hospital brings up the inevitable feeling of death. Here I am a mess when I can't speak to her everyday, but what would I do if I couldn't talk to her at all? There is no back up plan, no "in case of emergency mom". She is all I have, the only person I can get valued parental advise from. She's taught me how to be a mom, how to cope and deal with the bumpy road that raising children can be. So I sit and I worry, I pace and I take my ativan and I worry a little less (because the medication kicks in).

With Brinley still in treatment, I'm not comfortable leaving Blake holding all the cards, if something was to go wrong with Brinley, there is no guarantee I would be able to make it back in time to help juggle our crazy life. I also experience major anxiety when it comes to being away from Brinley. Could I take her? Sure, but having her 6+ hours away from a Children's Hospital is not ideal. So here I stay, stone walled. Granted nothing major has happened, but I've been having a hard time coping with the fact that I'm stuck here. When my mom had her first kidney transplant, my husband put me on the next plane to be with her. He took Carter, who was only 5 months old at the time and sent me to be by her side. But this time I have to sit on the sidelines and watch. I don't get front row seats, I have to hope that the next time I talk to her, she will feel better...even if its just the smallest of improvements.

To top it off, Christmas is up in the air. My dad will come (thank goodness, because the kids would be 100% crushed if neither of them could make it) but my mom is a question mark. Maybe if she improves she can make it, but I think she's preparing us all for the fact that she can't.  Don't get me wrong, I love my dad, he's an amazing Papa, and he's super helpful around the house, but I need my mom. As Brinley's treatment is coming to a close, I feel like I need her here to keep me sane. She played such a huge roll during the days of Brinley's diagnosis, so it only feels appropriate that she's here for the end, right?

So I'm going to sit, pace, and hope that on December 15th she will get off of the air plane with my dad. Because if not it won't be the same without her, and this dark little cloud over my head will loom a little longer.

Moving forward, 5 mins at a time.

Leading up to Christmas always seems like just a double edged sword. As November rounds the corner, I struggle with finding my footing between the pending holidays, and Brinley's cancerverary. As the days tick down to November 19th, I try to take them 5 minutes at a time. I wish the date in itself didn't have such a huge impact on me, I wish I didn't give a 24 hour period so much power. I can only hope that in years from now, I can look back and realize that November 19th has passed by without my knowledge.

     I can sit here and type the same thing I have written over and over again, but I can't stress enough how one hour has such an impact on my life. Two years ago, when I sat next to my husband on a tan leather couch, I was taking our hour conversation with the Children's Hospital Oncology team, 5 minutes at a time. Allowing the basic facts sink in, my child has leukemia, my baby has cancer, my baby girl might die. I can look back, two years later and recall most of that conversation, I know how I felt, I can recall the sad sympathetic faces of well practiced doctors and counselors. I often wonder how many times they have had to sit down unsuspecting parents and give them this devastating news, did they all respond the way I had?  Did they blink back the tears and nod quietly, stone faced, trying to tame the screaming parental voice in their head? 

November is tough.

Day of diagnosis, 6 months into chemo, 1 year after diagnosis, and 2 years after diagnosis.

Getting her IV

Her resilience leaves me speechless

Having a rough time with chemo and steroids.

Sleeping the day away.

Amazing Little Girl

Last week I expressed my worries and concerns about Brinley having her port removed. I'm happy to report that the removal went really well. We first met with her oncologist on Monday to do some pre-op lab work, and have her dose of chemo, it was also the last time she would have her port accessed. Her blood counts were good, she did take a hit in the ANC dept, but it was a good one, she went from 3900 to 1600...which is right where we want her. Tuesday morning came quickly, this time it was a family affair, all 4 of us climbed into the car and took the hour drive into phoenix. We filled out some paperwork, changed Brinley into hospital scrubs and let her play a little bit with her brother.

Good bye friend.

Big brother always supportive

Once they had given us the 10 min warning, we sat in the pre-op room waiting. Brinley was anxious, she wanted to have the port out and be done with it...based on her excitement  I also wonder if she's getting addicted to the propofol. (kind of kidding...) Finally the nurse came in and administered a syringe of versed. She has never had the drug, and after they gave it to her, they informed me that it was to reduce anxiety, and give her retrograde amnesia.  I asked why they would want her that dopey, and they told me it was to forget the surgery. I wished they would have spoken to me before giving this to her, Brinley has never had an issue going under, actually she looks forward to it. Little did I know what a picnic this drug would turn our evening into. After wheeling her into the surgical room, me in my lovely white "bunny suit" (white sterile suit) they put the gas mask on her and away she went. She was giggling and thrashing about as she fell asleep, mumbling about Tinkerbell  At least she was giggling and not screaming. After about an hour, Brinley's surgeon came into the waiting room to tell us everything went well, she had her port removed, her lumbar puncture with chemo, and a flu shot. Only one of us is allowed to go back, and Blake can read my anxiety like a book, so he volunteers to stay behind with Carter. Once I see her I feel 100 times better, she's still asleep, trying desperately to wake up, but she's ok. I take my designated spot beside her, holding her hand, trying to coax her to open her eyes. I make small talk with the nurse, and once again I find myself apologizing for taking photos. I just want to document everything she's been through, so when she's older she can look back and witness her triumphs.

5, 10, 15 minutes go by, and finally Brinley opens her big brown eyes. This is where it gets "fun". The look on her face is pure confusion, and anger. She's angry because we didn't have her port removed, and she's confused, and doesn't know where she is. She keeps asking when she will have her sleep, and I remind her that she did have her port removed. Eventually I just put the sterilized port in her hand, so every time she accuses me of not taking her to her surgery, I just point to her hand. This is what they call retrograde amnesia. I feel bad for her, the look on her face is pathetic and sad, she's seriously angry with me every 10 mins. After she eats her pineapple/strawberries (the one thing she requested wanted to eat when she woke up) we are cleared to leave. Once we're all loaded into the car, Brinley wants her pineapple and strawberry snack....here we go again. The hour ride back home is spent reminding her that she's eaten it all, and her crying thinking we cheated her (why I didn't keep the empty container is beyond me.)      

Once we get her home and comfortable  it doesn't take her long before she wants to climb into bed. We oblige her, give her a dose of pain killers and tuck her in. A little while later I notice her bandage is soaked with blood and it's all over her pajama shirt. After a quick chat with her surgeon, I apply pressure to stop the bleeding, change her bandage, and with a little luck we wont have to go into the hospital. The next morning she complains a bit from the pain, but another dose of lortab seems to work ok for a couple of hours. Around 10am she starts wiggling around saying her hips hurt. She can't have anymore lortab, so I call our nurse, Kate. She tells me to give Brinley a dose of oxycodon, and see if that helps. It works for about an hour, and once again her pain is elevated. Kate tells me to give her the other half of her oxycodon pill and if that doesn't work call her, and we'll talk about giving her morphine. I finally get her settled in and relaxing on the couch, we share a pillow and snuggle up together, waiting for these painkillers to kick in. After an hour goes by Brinley starts crying, telling me her back and hips hurt, watching her walk is sad, she's limping and hunched over. Once again I call Kate, and she tells me I need to bring her into the clinic, they can manage her pain better with an IV drip. I assemble what I believe is everything I need for a quick trip. As I'm rushing out the door, Brinley can't walk, and she wants me to carry her. Hello flashbacks! It feels like the same drama we went through in November of 2010, my rushing out the door with my baby girl in my arms. I keep telling myself, "her counts are ok, her counts are great".

On the way in Brinley switches on and off between screaming and crying, this is the worse for a mom, not being able to fix it. I finally get her to the clinic and we're rushed to a room, Kate has everything prepped for Brinley's first IV since 2010. We both agree, this is NOT how we wanted the first one to go, but it must be done, she quickly assures Brinley she will be ultra gentle, and j-tip's her arm, shortly after the IV is in. Brinley was a champ...could have been because she was drugged, but nevertheless, she never ceases to amaze me. Once her pump is in place, they give her a dose of morphine, and put her in the back, cozy with warm blankets and a personal dvd player. She's a happy camper...for 30 mins.

Shortly after the pain returns, and it's a 10. She's wiggling and crying out, doing every and anything just to get comfortable and make it stop. She now has to use the washroom, I offer to carry her, but she refuses, watching her get up to walk is heartbreaking. She's on her tippy toes, bent at 90 degrees at the hip, she's wobbly, like a baby horse walking for the first time. Again, Kate administers another dose of morphine and it holds her off for 15 minutes. At this point she's screaming and sobbing. I can say, without a doubt, I have never seen Brinley in this much pain. 

At last her doctor comes in and tells me that she needs to be admitted for an MRI, the clinic can no longer manage her pain. The sucker punch comes when they tell me that she HAS to go via ambulance, her pain is too bad for them to let me drive her, and consider it safe. I can't leave my car at the clinic, so I can't even go with her, instead I am left following. This is insanely hard, I go to my car by myself, call Blake and continue to ugly cry over the phone to him. It kills me that she's in so much pain, and I can't hold her, I can't be there with her rub her head while she's strapped to the gurney and rushed to the hospital. I feel absolutely helpless. I rush into the hospital admitting department, have them burn through the paperwork, and run to her room on the 7th floor. She's sitting there, high as a kite, telling me what fun she had in the ambulance, and now nice the man was, again, this child is amazing, not even a little upset mommy couldn't come. We're told her MRI is tomorrow, and we get settled in for a long night. Brinley does ok, her pain is masked by a few IV injections, and she falls asleep until 2am, in which she awakens and tells me she wants to play. Poor kiddo, mommy wants to sleep. I allow her to watch tv quietly, and at 4 I hear her turn it off and go back to sleep. 6am comes fast, and Brinley is desperate to hit up the playroom. The bad news is that it doesn't open until 9:30, the worse news is that she can't eat or drink anything...but the good news is that we're not hospitalized based on low blood counts, so she can venture around the 3rd floor with me, and help me do laundry (her pajamas), and we can get coffee at the parents lounge on the 7th floor. Finally after begging and pleading, 9:30 arrives and we quickly we're off to the playroom. After an hour or so, we get a visit from Auntie Bear, and baby Kennedy, Brinley is trilled, she loves her Auntie. She also gets a very special pony, which is fantastic, since we don't have anything from home, this can occupy her. Eventually  after not eating since 10am the previous morning, she is hungry....SUPER hungry...and she can't eat. This goes on until 2pm, when they finally tell us that MRI has called and they're sending for her. Just as we're getting ready to go, a fantastic donation from Go 4 The Goal comes in and presents Brinley with her very own iPad. It's amazing to see your baby smile after hours and hours of crying.

Off to MRI we go, they are ready for her, and there is no wait. Brinley again is VERY excited about her sleep, I'm insisting it's because she knows she can eat after it's over. She's allowed to administer her own anesthetic, which she loved doing...as you can see. Have I already said how amazing she is?

MRI is over after 45 mins, and we're back in her room ordering her dinner...3 tacos with fresh tomatoes  and a bowl of pineapple. We didn't have to wait long before our nurse tells us that we'll be going home, and the doctor was doing up the discharge papers. Great news! But what was on the MRI?  About an hour later, the doctor comes in and tells us that her MRI showed that during her lumbar puncture, they had actually "nicked her bone" and that she was leaking spinal fluid. Nothing can be done about it, but giving her ibuprofen will help tremendously with the swelling her in back. We're free to go home and let her rest, and that she will be sore on and off for 2-3 weeks.   So now we're home, keeping a low profile, and having Brinley rest up. She is determined to go back to school on Monday  so I'll send her in with some pain medicine and keep my fingers crossed that she will be ok.  It's been a very long emotional week, but I'm glad to be home, and glad that this was the last lumbar puncture of 2012.

Anxiety and Momentos

Well, port removal day is nearly upon us. I was gung-ho about making the appointment, and scheduling her surgery with the encouragement of Brinley's oncologist and nurses...and now I'm panicking. The surgery itself only counts for a small portion of the anxiety. There is always a risk when a person goes under anesthetic, and as I have mentioned before, it's always a painful relief to watch her wake up. The pain has to do with the fact that they bring her out strapped to machines and oxygen, eyes rolls into her head, coughing, gagging  raggedly breathing. I'd like to say I've grown accustom to it...but who am I kidding, you never get use to it, no matter how many times you've been witness. The relief part comes after she open her eyes, mumble a few incoherent words, that are usually focused around food, or shopping, sometimes both. It's a comfort being there with her, holding her hand and coaxing her out of a groggy drug induced sleep. That counts for maybe 30% of the sleepless nights.

The rest of my anxiety relys heavy on the fact that we are one step closer to the end. One step that should feel like a celebration, but instead feels like an inevitable force that is pushing me towards a cliff. I have no idea what is at the bottom, but I have to take a leap of faith, and free fall into what I can only hope is a cancer free life for my child. This little nagging feeling keeps me awake at night, it steals my thoughts and sends me reeling into that familiar world of "what-if". Tuesday morning, we will assemble as a family, and make the hour long drive into Phoenix. Brinley will be put under anesthetic, where they will make a small incision on her chest and pop her implanted vascular access device (IVAD, port) out. They will also administer her second to last dose of intrathecal chemo into her spine.

Lately I've come to face with these little reminders, of what is almost 2 years ago. Sometimes it's her little slippers, the colorful little knitted ones that I ripped the house apart to find. She was stuck in the hospital, she hadn't been diagnosed yet, I had gone home to pack some more clothes and a few toys for her, and for the life of me I couldn't find the damn slippers (my mom found them after DX, mom saves the day again). These slippers have seen it all, every hospital stay, every lumbar puncture, clinic visit, they have been there. And now they are too small, and I can't bring myself to do anything with them, other than hide them in the top of my closet.
Then there is the small Tupperware container that still holds the 2 children's Advil I had taken with me to the Christmas tree lighting in Edmonton (in November). I couldn't get her fever to go away, and she was so determined to see the tree, that I gave her a dose before we ran out the door, and brought an extra, stashed in my coat just in case she needed it. I found the tiny purple container the other day, purple little chewables still inside, and again I haven't brought myself to use them. Instead I when I've run out, and Carter isn't well...I buy another bottle.
There is the journal I wrote in, to have documented notes for the doctor when I brought her into the ER for the 2nd time, I didn't want to forget anything. Flipping through the pages and I realize how frantic my writing got at the end, it ends with, "fever persist, still won't eat".

I've never been one to hang on to things, I never had a favorite teddy bear, or blanket. I didn't have attachment issues growing up...and now I'm an adult of 30, and I can't bring myself to rid myself of these little reminders.

Go gold!

September is childhood cancer awareness month, did you know? Did you know that the gold ribbon is for childhood cancer? I see a lot of breast cancer awareness, pink ribbons everywhere, especially with October around the corner...but I have yet to see a single gold ribbon. It's disheartening as a parent to a child with cancer how little awareness there is for such a life challenging disease.

Now that it is September, it really makes my mind drift to nearly 2 years ago. I've met families that are new to this world, they are scared, uncomfortable and overwhelmed. I remember feeling like that, I understand the struggle and the heartache they feel, and every once in a while, on a day Brinley is feeling particularly rotten those memories, doubts, and fears some rushing back. It's easy to become complacent in your day to day routine, where cancer is the norm, check ups, clinic visits, spouting off prescriptions  allergies, doses, and blood counts. To be honest I don't really remember what life was like before cancer. Most kids get bruises, aches, pains, sore limbs, but if Brinley ends up with any of these typical ailments, my mind races, "does she need a CBC?" "maybe her platelets are low" what if, what if. I have no idea what it's like to brush it off to, "oh she's just being a kid" and I'm not sure for the next 5 years if that feeling will return.

With Brinley entering kindergarten, my anxieties and fears become magnified, am I too protective? Maybe I'm giving her a complex, and she will become the kid that worries all the time, It's a struggle, I'm trying to find a comfortable middle ground, but there is a voice in the back of my mind saying, "you can never protect her enough".

Speaking of Brinley and kindergarten, she's loving it, she's made great friends, and has become the social butterfly. I couldn't be happier with her school and teacher, they have really gone above and beyond to ensure Brinley is in a safe place. The first week in she caught a bad cough, and we had a croup scare, but she turned out to be ok, and managed to kick the virus all on her own!

Since we've been out of the hospital in May, Brin still isn't on her full chemo dose, they say her body can't tolerate it, every time the doctors increase her dosage, her counts plummet, and the main focus is to keep her cancer free and out of the hospital. We're managing the cancer free bit, but making sure her ANC stabilizes, and she remains fever free has been a challenge.

In other news we have 2 more lumbar punctures to go, oh boy how far we've come.

first day of school!

helping the Dr. administer anesthetic

Hopefully I can stop neglecting this poor sad blog, but truth be told, with school, sports, extra activities, at the end of the day I'm lucky if I can get out a coherent thought.

waking up

beads to date

first d-backs game!

The Land of "not so great"

Its been pretty quiet since I last blogged, mainly because we spent the last 2 weeks locked inside the house. I unfortunately missed out on Carter's last baseball games, and party, but was proud of him and his team for going undefeated all year.

During the last 3 1/2 weeks, things with Brinley took a turn, I can't say a turn for the worst, because the worst is being dramatic...but it took a turn for the "not that great".  After our two week house arrest, Blake and I took Brinley into clinic for another blood draw, to see if she could come out of hiding. After all she was acting great during the weeks of being in the house, lots of energy, great mood etc. To our surprise Brinley's ANC went from 204, to 18, I assumed we'd go back to house arrest, but the oncologist at the time, said it was unneeded and to go about life as you normally would.  So we went to Best Buy and ran home. The whole time I question my last 2 weeks of being her under lock and key, since her ANC was better then, did I really miss out on my sons last games because I'm paranoid?  Saturday comes and we make plans to hit up the Tempe Marketplace (lovely outdoor mall area, because "outside is fine") I notice that Brinley is off today. She woke up with a tummy ache, and slept until 9am, she woke up watched TV for a while, and then requested a nap.  Nap requests are kind of a red flag for us when she's not:  a.) on steroids, or b.) coming off of a lumbar puncture or a dose of vincristine. I'm about to put her down for a little rest when I feel her head and she's hot, DAMN! I take her temperature, and she's 100.0, not exactly a fever, but an elevation, something to watch.  While she rests, I call the oncologist on call and let them know that Brin may be developing a fever, she tells me to let her sleep for an hour, and retake it, if her temp is 100.4 and over bring her into the main campus ER.  An hour goes by, and while the clock is running out, I'm running around the house packing, I will not get caught with 2 outfits like the last time, and worst case scenario I have to unpack...big deal.  I retake Brinley's temperature and she's 101.7, double damn and shit! Off to the ER we go.

Upon arriving the oncologist has called the ER to inform them that Brinley is on her way, and they have gone ahead to prep a room on the 7th floor of the Phoenix Children's Hospital. After all the formalities of the ER, height, weight, port access, blood draw for cultures, they start her on a round of antibiotics and we wait for the admitting paperwork.  In the meantime Brinley knows full well that we're sleeping here, and is rather excited to see her "room". Over the next 4 hours she's restless, and continues to look DIRECTLY at the nurse station, and in her loudest voice says, "MOM WHEN IS MY ROOM GOING TO BE READY!?" This girl knows how to get her way.

Hives!

Once we're admitted, we get settled in our room, I begrudgingly unpack, and make up my bed. Say goodnight to Brinley and notice a little bump on her chin. I ask her, "what did you do to yourself?" and she says she fell on her chin getting food, not exactly a far fetched idea, but why have I just noticed this? Chalk it up to a long week being locked up and exhaustion. The next morning we rise and shine to a face full of hives! The nurses and residents hum over it and give her a dose of benadryl, clearly it's something that she had a reaction to prior to being admitted.  That afternoon, after her 3rd dose of antibiotics, gentamicin, and cefepime, she breaks out again, this time much worse.  The doctors again scratch their heads, and take away the gentamicin, because cefepime isn't something kids are really allergic to. The next day after her afternoon dose of cefepime she breaks out in hives, again, worse than the times before. More head scratching, they figure, the gentamicin is probably in her system still, so she's having little aftershock reactions, calm it down with benadryl and she'll be fine tomorrow. WRONG the morning comes and in hives and they are painful and itchy this time! The oncologist takes her off of the cefepime and replaces both gentamicin, and cefepime with an antibiotic called zosyn.  Well she's allergic to zosyn too.  From what I understand, those are 3 "big gun" antibiotics she's having reactions to, there are more antibiotics to use, but these seem to be their favorite. The next runner up is meropenem, if she's allergic to this we need to bring in a specialist.  Meropenem seem to be the winner for Brinley.

...Meanwhile, all this is going on and Brinley's ANC is a steady 0.  This leads them to their next worry.  Because her ANC has been 0 for 3 days in a row, they are worried that her bone marrow isn't making neutrophils. The oncologist warns us that he will give her 2 more days to put a number on the board or else they need to go in and draw bone marrow to rule out relapse. There's that word again, I hate that word, I especially hate it  when used in the same conversation about my daughters well being.  Instantly my legs feel wobbly and numb, I'm numb, I feel like I've been sucker punched.  I take a deep breath and call Blake to let him know whats going on.

This is one of many times I can truly appreciate my lovely husband, he has this amazing calming effect on me. He assures me that whatever it is, whatever they find, we'll tackle it and do our best to keep Brinley as healthy and happy as possible. Seriously. this man is amazing.

So after a very restless night, the nurse taps me on the shoulder early early in the morning and whispers, "hey mom, her ANC is 96". I want to cry, I'm so relieved. Of course I call Blake, and then my mom. Her bone marrow is recovering!!!

Sunday her numbers are amazing, ANC 375, lots of monocytes, lots of evidence that her ANC will continue to rise, and we are SENT HOME after a very long 8 days.

Brinley will go into clinic this week to have more blood work, to see if she's ready to continue chemo (she's been on hold since May 8th).  This Saturday Papa and Grandma will come for a 3 week stay and Brinley couldn't be more excited, to be OUT of the hospital, and then to see her favorite people?! What more could a girl ask for? Maybe some good blood counts!!

House Arrest

There is nothing I hate more than the feeling of having the rug swept up from under me. I've never been keen on surprises, and I've never been overly patient.  So this week has really been testing my own ability to cope, HA! and it's only Tuesday. It's going to be a long 2 weeks...

Yesterday Brinley had her scheduled blood work pre-surgical yaddd yadda.  Last month her counts were great, the talk of increasing chemo was breached, and put off until this month. So of course we stroll in thinking her counts will be great and we can continue on this lovely little path she's been on.  WRONG.  Her counts have tanked, not bottomed out, but they suck and she's neutropenic (thanks to a cough and ear infection).  So we've been instructed to withhold her oral chemo and we have to come in for another CBC in 2 weeks. That also means 2 weeks house arrest, nobody in, and certainly no Brinleys out.  I can deal with the fact it kind of screws up another anniversary for Blake and I (last year I was stuck in isolation with Brinley for 2 weeks) we can always take a rain check. Mother's Day holds the same feelings, rain check we can play catch up later, it's just not that important.  However I'll have to miss my son's last 2 baseball games of the season. I have yet to miss a practise or a game this year, and the last two big games I have to sit at home and silently cheer.  The guilt is overwhelming, I understand that Brinley has missed out on a lot, she's the sick kid and I feel for her, but Carter isn't the sick one, and I feel he still gets the short end of the stick.  Whatever Brin misses out on, she's made to feel cherished through the hospital staff, friends and family. Carter gets to have his mom explain why AGAIN she can't be there for him. I'm entirely grateful that he handles it so well, but it destroys me that he even HAS TO.

...Not to mention week one of lock down is steroid week? What kind of cruel and unusual punishment is this?

Today Brinley had her lumbar puncture, she was the only one slotted for today so instead of pacing the waiting room, the nurses were kind enough to let me pace the recovery room. They even offered up a few sympathetic looks and small talk. Guess I wear my anxiety all over my face.  After the LP is done and over with they wheel Brin out on her bed with the oxygen mask strapped to her face. This is a first for me, I've always been there once she's either been fully awake, or stirring a little, so to see her out cold and involuntarily jerking scared the shit out of me.  Yes jerking, I can tell by the look of horror that must have been on my face the anesthesiologist says, "she's still out and she's trying to cough that's why she's moving like that". I swear I aged 10 years right then. It took me back to the time where my father in law was on life support, and the machine was forcing air into his lungs, and his body to jerk slightly at the force. Oh cancer you never fail to send me reeling down the rabbit hole.

Cancer never sleeps.

What a weekend!!

A few months ago, Blake caught wind of a cancer relay here in Arizona, in Phoenix to be exact.  So he signed up and the ball started rolling.  He was lucky enough to have some of our friends and family sign up on his team, since the race is 12 hours, and one person from the team has to be on the track at all times...he would have been walking a full 12 hours solo if it wasn't for them.  The lovely big shock to me, was that in the past few months, Blake and my girlfriends from Edmonton have been working on a surprise.  Little did I know that they had planned a trip down here to take part in this relay with Blake, So when I got a phone call from Jill, Kelly and Colleen asking me to join them for a beer...in the CITY...I was totally shocked and caught off guard!   Needless to say I quickly threw some over night gear into a bag and ran out the door to join them.  The night kicked off with drinks and dinner, drinks and a dueling piano bar, drinks and a club where we stuck out like a few sore thumbs, and of course lots and lots of laughs.  Needless to say, Saturday morning came hard and fast, taking aim for my brain, I felt like mother of the year, sitting among the Mormon folk of Queen Creek, ice cold water bottle firmly pressed to my forehead nursing a hangover.  After the game ended we ran home so Blake could sleep a bit, since the walk was from 6pm-6am (because cancer never sleeps), he needed a few hours as a buffer.  I won't lie, I fell asleep for a bit too...much needed! 

The relay was amazing, Brinley was the youngest survivor taking part that they had ever had.  Needless to say she became a celebrity among the crowd. She had picture requests with other teams, high school students, and comity members alike.  She was brought on stage during the opening ceremonies to personally meet Sparky, the ASU mascot (he was a little scary for her). She also took lead during the survivor walk which was particularly emotional for me. You see, Brinley had to kick the survivor lap off, but she wanted to do it by herself, she didn't want mom and dad's help...however she was a little taken back by the crowd lining the track, clapping for her.  So Carter, being the amazing little man that he is, ran around the inside of the track, just in view of Brinley, shadowing her the whole time, and yelling out encouragement.  It was phenomenal.  Here is my 6 year old little man, taking it upon himself to comfort and encourage his baby sister to run around the track, making it look as if she was doing it alone...but he was right there with her, every step of the way. I still get choked up just typing the words.

Next came to luminaria  ceremony, which was absolutely beautiful.  We all followed a bag piper around the track, and the track was only lit with the hundreds of luminaria's.  Once the lap was complete, the names of the cancer victims, and survivors were read out loud while we all silently walked in the dark.  Then we each stood behind a luminaria, one per person and we were all handed blue glow sticks.  As the announcer then asked the everyone if we had lost a mother, father, sister brother...etc to cancer and if we had, we were to break the glow stick and walk around the track.  It was amazing to see these tiny lights break away from the pack, and walk the track. Needless to say it was an emotional moment where I kind of had to break away and walk alone for a bit to collect myself.

After that I took the kids to our friend's Nate and Natalie's house for the night for a sleep over. Much better solution than driving an hour and 20 mins to get home...much more fun too! Blake and Nate came home limping, raw, and so so sore.  I guess walking for 12 hours will do that to you.  Blake had huge sore blisters from his shoes, and stiff muscles.  But I'm so proud that he really didn't stop.  He said if he was to stop, his muscles would get cold and seize up, so to avoid added discomfort and pain, he just continued to walk.

To say this weekend was amazing wouldn't be enough. I can't put into words how much this all meant to me.  The visit from my friends, the treatment Brinely received, our friends and family's dedication to supporting the cause, and my husbands amazing effort to not only walk for cancer, but to surprise me.  It really means everything to me. Love you all!

The Luminaria we made for Brinley

carter and brin holding the "brin's cancer kickers' sign