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.