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.