Monday, April 15, 2013

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?

Sunday, February 24, 2013

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 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."

Monday, February 4, 2013

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 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.

Saturday, January 19, 2013

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 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.

Friday, January 18, 2013


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.

Thursday, January 17, 2013

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.


I told Brinley that instead of celebrating her off treatment with her clinic party, she will have to undergo another 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

Sunday, January 13, 2013

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.

Thursday, January 3, 2013

I still need her 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."