Thanksgiving.......as we prepare for what we are thankful for (and we do have so much to be thankful for) all I can think about is the tears that will be shed today for the Camarillo family. I'm a mess, I knew it, I know it, I'll pretend everything is ok. Pushing forward and getting by is what I do best.....it's an art form at this point.
Many of you may not know that my husband lost his father last week. Yes, 2 great losses within months of one another. How do you move on and move forward....there's no other choice.
Our first Thanksgiving without them.....how do we sit down, eat and try to enjoy all that we do have. I'll have the answer of a question that I shouldn't have had to ask myself in 6 hours that I'm sure will go by faster than I want. I used to think that time was passing so slowly after Caley passed and now I know its passing by at such a rapid pace that I cant seem to ever catch my breath. We are coming up on 6 months since Caley became an angel......6 months without her voice, 6 months without her touch, 6 months without her love, 6 months without her, the longest and at the same time the fastest 6 months of my life.
Tonight, we will honor Caley and my father in law...speaking of old memories as well as create new ones. We will allow all the tears that need to fall and wipe them away knowing we are so VERY thankful for having had them in our lives and know the 2 of them along with my mother, cousin Jennifer, cousin Patsy and niece Reyneice are looking down on us, sharing their own memories and looking over us as we share new ones.
It's been 3 months. I cant't figure out if it's the fastest 3 months of my life or the slowest. Sometimes time drags and sometimes it goes by so fast that I'm not sure if I've accomplished anything. I speak to you in my head everyday at 11:11.....do you actually hear me? Can you hear my thoughts? When I speak to you out loud it breaks me into a million pieces and takes all day to recover, but I guess thats the least of my worries. I often find myself hugging your sister tightly, closing my eyes and imagining that she is you.....it's not right, it's not healthy but I do it anyways.
Dad and I are trying to figure out our place in this world, trying to reconnect with old friends and find where we fit in with new ones. We are figuring out how to be individuals without one another, figuring out how to function without being attached at the hip....You know better than anyone how we pushed people away, how we shut people out (including family) and how I didn't want to share you, share your time with anyone outside of our home.....I was selfish and you allowed me to be and I am grateful for it. We are learning as we figure this out that is was you that held us together, it was you that gave us strength, it was you that gave me purpose. Of course I live for and love your brother, sister and dad......it's just different, only you and I understand this.
I don't find myself entering your room often, I can't handle it. There's not much I can handle so I keep myself busy so that I don't have a moment to think, to reflect. I don't have to tell you what happens to me when I do. So many what ifs, so many unfulfilled promises to you......I can only hope that I have plenty of time to take care of these. I've now gotten to the point where I function better out in public than I do at home, I guess its the distraction of others that makes it easier.
There is so much I want to say but I just can't find the right words nor the strength to put it all out there so I leave you with this......
My promise and pledge to you now will be to make sure your name isn't forgotten, for your name to become more than the fan who received a video message from Miley Cyrus, you will live on in granting wishes to chronically ill children and every time a wish is granted your name will be spoken BREATHE FOR CALEY "one wish is not enough."
I miss you more than mostest most and I love you more that than that. (only we get this)
***side note to supporters, once this account hits its goal to be able to carry out Caley's last wishes, anything over will go toward granting wishes.....keeping Caley's name, memories and legacy alive! Any amount helps. Thank you!
2 months to the minute.....I should be preparing for my 3 children to return to school, not 2. I'm not looking forward to the sympathy looks or those long hugs that will leave me pained, my heartbreaking (as if it isn't breaking enough). I'm not ready for it, I'm not ready for my kids to go back to school, to leave me. I don't go out in public like I used to, I'm more reserved mostly because I'm afraid to run into people I know but more so to run into someone I know but hasn't heard about the loss of my special child.
I've ran from social media, only checking in here and there. I hardly post or share my life....my incomplete life, my broken life, my life without Caley. I try to convince myself that her life is better; breathing free, running around like she deserves to but it doesn't help, not even a little bit.
I've become quite good at masking my true feelings to the outside world. I've learned to plop that smile on my face while I'm painfully crying on the inside, I'm kind of an expert at this point. I've had no choice as Caley's disease progressed (I somewhat refuse to give it a name anymore, it took my daughter and for whatever reason ignoring its name makes me feel better). I've thrown myself into the cheer season with Carly, I'm really glad to have a bunch of new parents who do not know what I've been through, my returning parents and everyone else who I call my friends have respectfully let me lead any conversations having to do with Caley and not pry or push me to a breaking point. I breakdown everyday... I have to, I need to or I'll fall apart. I am angry, VERY angry but I try not to let it get in the way of my day to day so I can continue to be a good mom to Martin Jr. and Carly (this is why my daily breakdowns help). I miss her, how could I not. I talk to her everyday longing for an answer that I know I'll never get. I think about that first trip....the first trip to spread her ashes (actually hair, I can't imagine separating her ashes, not keeping her whole for us) and it makes my stomach turn that she won't physically be with us. We talk about doing it over the Christmas holiday.....I'm not at all prepared for what the holidays will bring this year and I know I'll have to put on that smile and make it through, It's what Caley would want and one of the many reasons what made Caley so special. Caley didn't particularly like 4th of July due to her not being a fan of fireworks so I felt comfort knowing that she would never have to spend another 4th inside the house while everyone else was outside. I only mention this because that was the first holiday without her but I also feel it didn't count.....as we approach Halloween, her favorite holiday which I don't want to face, I don't want to deal. Once Halloween approaches the rest of the holidays seems to come fast and I'll have to take them like punches to the face. It's not fair but some how, some way I have to adapt to this new life, a life that I'm still not ready for but am already living. I wish I had it in me to post more, to share more but this short update took me an hour, its hard to type as you cry uncontrollably. Updates strip me to the core and so many thoughts/feelings run through my body and none of them good, none of them therapeutic, just pain and hurt..............
1 month....it's been 1 month since I've heard her voice, felt her warm touch, took care of her. I should be counting down the days for our next adventure but instead I count the days since she's left us, became our guardian angel. My days are getting longer and my nights are getting shorter as I long for her to come to me in my dreams....maybe I'm not ready yet, maybe sh's not ready yet. I close my eyes and see memories, not all good since the last day replays over and over. I miss you, oh GOD do I miss you!!!! I've always said CF and all that she was my easy kid....now she's become the hardest, the most painful. I went to the grocery store late last night to not run into anyone and as I walk down the aisle where I pick up all of the ingredients to her favorite dish (mommy's spaghetti) I broke down, never will I enjoy it the same way again nor could I buy the items....I left the aisle. Checking out, with obvious sadness in my eyes, in my face..... the checker says, "I hope things get better for you," in my head I answer .....not likely as I made my exit. I want to scream, I want to curse but I just cry....sit silently and cry. Eventually I'll be able to push forward but for now all I can do is take it one day at a time. I was never able to clear out the bottom room to rent it out....it's too soon, too fresh. I walk in and remember the bed we shared and the talks we had, how can I disturb that?! .....I CAN'T!!!!!
Here I go....my attempt to clear out the bottom downstairs bedroom, the room Caley and I shared before she was hospitalized and never came home. We will be renting it out. The thought of Martin going back to work makes me physically ill. When that day comes I can only imagine what it will do to me emotionally....mentally. Renting out the room will help keep him home for a little longer and hopefully together we can get some groundwork done on the foundation we will start in Caley's name. Breathe for Caley "one wish is not enough".....not every parent of a chronically ill child is social media savvy and many of you know the wonderful things I was able to make happen for Caley via twitter. Caley and I often talked about starting a foundation grating second wishes for others....I will carry this out. Second wishes to kids who are chronically ill, 5 years must have passed from first wish. We all know 5 years makes a big difference...at 5 it's Disneyland.....at 10+ it's meeting a celebrity or a shopping spree. I watched Caley struggle and suffer for 12.5 years and she deserved a million wishes, children like her deserve at least 2 and that's what I aim to do. Grant wishes and keep her name alive....Breathe for Caley!!!! But for now keeping Martin home is my goal.....I'm prepared for the many breakdowns that I'm about to have.
We had an unplanned out of town trip this past weekend. Martin's father fell ill but is currently stable with close monitoring. 4th of July didn't come without it's meltdowns but was able to breathe through most of them and enjoy watching my kids light fireworks, swim and most of all smile with their cousins. I try not to feel guilty about creating memories with Martin jr. And Carly but it's a feeling I can't shake....not yet. She was with us, I know it, I felt it. These updates are getting harder and harder for me as I know everyone is living their lives and I need to live mine....just differently, just heart broken, just incomplete. We have plenty of time to fulfill her wishes, as I sat in front of my computer several times to try and book a trip for the 4 of us to bond (I've been so absent for them over the last several years....for that I feel guilty for them) it always ends with a breakdown and shutting to computer down. It just doesn't see right. My heart aches beyond imaginable, I can get through the day and be "normal" around others for the most part and then there's the overwhelming guilt that arises. I know in time I'll get better but for now the pain....the pain, the emptiness just 'effin sucks!
We said our goodbyes last week as we celebrated her life that was so unfair and cut way too short. I go about the day wondering why....of course I'll never know. My heart is shattered, I try to breathe through the meltdowns and sometimes it works and others times....well I don't have to tell you. I wanted to take this moment to THANK everyone who has had a special part in our lives over the last several months, from providing meals, hosting/planning events, providing venues, donating drinks/desserts, donations, cards, flowers, volunteers, articles, attendance.... the list goes on and on and to those who still plan on helping our family with future events. Words are not enough to fully express our gratitude. In our time of need the support of our community means so much to us and as heart broken and pained we are that our lives are forever changed we are comforted by all of you. Thank you.....
It's been one long week since Caley earned her wings. I wait for the long hours of the day to end so I can go to sleep only to wake up and not hear her voice, hear her cough, feel her touch and start the process all over again. I have moments when I feel that I can pull it together.....those don't last long. I break down throughout the day. I know it's to be expected because I miss her so much and my heart has never felt pain like this. She was my life, my everyday life. I don't know any different. I was only storng because of her and without her, I don't know how to be strong anymore. Caley believed the time 11:11 was a lucky time in the day and for as long as I can remember I've set my alarm to ring and I would yell out 11:11....Caley would make her daily wish and I would drop to my knees and pray to cure CF and cure Caley....I'm sure my prayer and her wish were the same. Now I take that time everyday to tell her how much I love her and how much I miss her. God do I miss her.......
My Caley was an Amazing child with many Dreams and wishes! Even in her last weeks of Life she told us what to do and how to make her wishes come true! (Its like she felt what was going to happen)
This account will now accept donations in order to fulfill her requests and help my Family afford to spread her ashes and respect her last wishes to all the Places we never made it to because of her Disease!
Please donate with your heart & help us fill Caley's Last wishes!
It was our promise to her to never give up!
Caley it's Me Daddy!
Its Father's day today and I Miss you so very much! I am sending this message to everyone i can to help me reach the goal & blow it out water! I gave you my word & i wont give up just like you Never gave up!!! We love you so much & miss your pretty Eyes!
Settings in her non-invasive bipap assisted breathing machine are almost met. Once these numbers are met and there's no improvement we have no other choice but to intubated (place a breathing tube) Caley. She being monitored very closely for any change. After this happend we have one option....and only one option. Transplant is the only option that will buy her time. I use those words because it is not a cure...it would only allow her time that otherwise she wouldn't have. Please pray that the board changes their mind......
Sometimes updating brings in an emotional roller coaster for me as I receive so many touching FB messages, texts, PM's, etc. I've been holding it together and haven't been willing to open the flood gates but I also know that so many want/need to hear an update. So many have been following Caley's story for years and some new to her/our situation, no matter how long you have been a supporter we appreciate every single prayer, positive thought and all of the good vibes being sent her way. She is still in the PICU and just as I posted an update about an upswing everything went south. Controlling her fevers and sugars have been the biggest obstacle. Fevers in upwards of 104+ and sugars ranging from 60-285 on an insulin drip has made Caley's little fingers into pin coushins....sticks every 30-60 min over the last 4/5 days around the clock...yes that's over 100 finger pricks. She woke up with yet another fever this morning so at this point we are just waiting. Waiting for fevers to stay down, waiting for a consistent good sugar check, waiting to continue ween her oxygen....at one point she was almost at 20 liters and now down to 10. She continues to need a higher than "her normal" assisted breathing with her bi-pap and treatments around the clock. There is a lot going on and I will update just as soon as I can. Thank you again for walking along side us through our journey.
I don't have any new news today other than her health is not improving. We are faced with blaring monitors all day/night. It's just about that time she heads to the P-ICU. She is now in the fight of her life and I'm fighting for her....it's been a long last few days and am keeping the faith, putting everything in The Lord's hands that I am doing everything humanly possible to save her. We are out of options except 1......
No improvement so far. Caley continues to spike a fever up to 104.4 without any explanation. At 3am they had to draw blood from the back of her hand bc her veins have been so abused by the number of PICC line placements before getting the mediport throughout the years. I wish I had better news. All we can do is pray and faith in our Lord.
Rounds this morning....one of free doctors opens with:
"Caley is our 12 year old end stage CF patient......"
My reaction....I heard nothing else as I felt like my heart was just ripped from my rib cage. My body stayed present but the rest of me hid behind my eyes swelling in tears as I fought with everything I have to not let them fall. I have to, I need to stay storng and that's what I will do. Caley will feed off of my fears and that's not how I want her to live out her life, that's not how I want to live out mine with hers.....Day 2
There is so much I want to say, so much I have to say, so much I don't say. I look into her eyes and see the pain, the sadness that I can't take away. I fight back the tears, swallow the words and sit beside her day after day, lay beside her night after night pained to my core watching her cough up mucus, cough so hard that she convulses. 12 years of this, although much worse now she's done this for 12 long years. 12 long years of missing out, 12 long years of meds, breathing treatments, needles, admissions, surgeries, procedures, you name it......when is enough, enough?! #BreatheForCaley
Off to testing today....will find out if Caley is a candidate for a portable oxygen concentrator (POC) so that she can fly. Nervous for the outcome as this test.....it very well could decide our path for us.
Caley and I hide behind our smiles so well...it's our amour, it's our safe place. Sometimes it's not enough. We need to find our way back from this emotional rock bottom. How?! I will share more as soon as I can....thank you for your support and understanding.
Caley's crew has challenged our supporters to a 5 $ Friday!!!! Donate just $5 today toward the much needed FAA approved oxygen concentrator so that we may begin our journey to a second opinion at Texas Children's hospital. All donation made today will be set aside for this purchase. Thank you for your continued support!
We received some lab results back in the mail yesterday from her sputum culture....4 different types of Staph are brewing, pseudomonas (CF pneumonia) and aspergillosis (mold). You'd think I would have had a phone call from her CF team for a course of treatment.....they will be hearing from me tomorrow. Caley has def had a decrease in energy and an increase in cough and coughing up mucus. We've had to increase her oxygen to 3 liters to stay above 95% oxygen saturation. Today, the last 10 hours has consisted of treatments, meds, naps , feeds by gtube and not getting off of the sofa. Then.....she had a boost of energy so what so we do?!? We put her to work!!!! Slicing olives for dinner followed by a baking session of snickersoodles. So grateful for this moment. Freezing time with photos!!!
Good morning. I wanted to share an event with those who have signed up to receive updates on Caley. Picture is attached with all info. I have tickets on hand as well if you'd to purchase any. Thank you and have a wonderful day!
Since Caley's bump....that she was able to recover and heal on her own, we took her out to the store on Saturday and a movie. Just her with mom and dad. It was great. Carly and Martin jr spent a great day with their Tia, Tio and cousins at Great America. We were out of the house for about 3 and half hours and we hardly remembered about the hymoptisis until the next day, Easter Day. Where she spent the whole day on the sofa feeling tired, weak and icky. The bump took more recovery time than I had anticipated. This brings me to that same decision about the Ellen show. We should have tickets to this Thursdays taping and we will plan to go with that voice in the back of my head telling me I can always cancel at the last minute if needed. Caley has a very important appointment on May 9th....which will give us and the docs some much needed info on Caleys current status. It's a good starting point to take to Texas (as soon as I can get my hands on a travel oxygen concentrator) or possibly information for grounds to revisit their decision of denying Caley a lung transplant. Caley just needs rest so rest is what she'll get! Thank you all for your continued support, I can't out into words how much my heart has been touched by every single one of you.
Darn it (although I have some choice words in my head I'll use that verbiage for now. It's back....hemoptysis. Yep, bleeding in her lungs. I've been by her bedside a number of times when this has happend and I've seen it go both ways, near death and on its own healing. We are monitoring her closely throughout the night to not jump the gun and head straight for panic mode. Although this isn't good in any way, we have decided to attempt to let her self heal....taking all of the percautions that the hospital would take. Thank goodness we have hospital monitors here now and can watch for any change. Please keep Caley in your thoughts and prayers tonight as we hope this is a bump and not anything serious.
I am on complete autopilot. I just do what needs to be done w/o hesitation. I'm cleaning out the used needle drawer to transfer everything into a sharps container and I realize how this is such a small portion of what she goes trough but yet it seems like so much. I don't think anymore, I just do. And just when I think I've come to terms with everything I look at this and it brings me to my knead to ask why?!?!.....why?!?!
Caley only gets a 6 hour break from her feeding machine so we are attempting to stay out of the house the entire time. Taking multiple tanks, breathing treatment devices and meds to see how much we/Caley can handle.... Good thing my mother in law let us use her SUV, everything takes up so much room
Yesterday's appointment.....let's start with what was really good, her weight was up!!!! 24 hours a day of xontinous feeds through her gtube will do that. We can now scale back a few hours a day giving her a break...yay! If she drops even an ounce then It's back to 24/7. She is holding at 2 liters of oxygen and at 35% lung function. So there's no change in that area....I'll take that as a good sign. We now need to wait for results of a sputum culture test. Closer monitoring of her blood sugars begin today....boo, more finger pricks. Pending results of test next visit is scheduled in 10 days. If she continues to stable we can begin our journey to Texas Children's Hospital in Houston for a secon opinion. Thank you for all of the prayers and support we can't express to everyone enough how grateful we are that you are all here in our journey.........
Caley has not been out since she was discharged. There has been good days and bad days. Today we take her back to Stanford for testing. We are praying for even the slightest bit of improvement, however I would settle on no change. Stable is better than nothing. We just want to move forward and begin appointments in Texas for a second opionion. #BreatheForCaley
Researching today has brought me to an emotional in-pass. Where to go from here....are we making the right choice? Are we giving her the best quality of life (pre & possibly post)? My husband and I possibly living donors, putting the 3 of us at risk and 3 children without their parents, one of us not with Caley every single step? (Clarify: not sure if this is an option, just researching) I will be calling a few referrals at Texas Children's Hospital to begin the process of a second opinion. But this needs to wait until tomorrow. Today, just today I want to stay next to Caley on the sofa all day (inbetween meds, feeds and treatments that is).
.....and she is home!!!! Please, No visitors for at least 48 hours. We need time to be together and adjust to the changes and new machines in Caley's care. Also, please be warned if you come to visit we will ask you to wear a mask (we will provide) the entire time you are here. Of course Protecting Caley is our number 1 priority.
Caley's team and us feel that since she is out of immediate danger from the bleeding in her lungs and maximized care in the hospital has been reached. There isn't anything they are doing for her that we can't do from home. Moving in that direction.....getting things in order and set up for this to happen soon. Changes but we will adapt.
1 month.....today another med was added back to Caley's treatment. Just 1 more to go before she is back to full CF care. Repeat lung function testing on Thursday or Friday and we go from there. She is still dependent on 24 hour a day feeds through her gtube and on 2.5 liters if oxygen...this likely won't change, this is our new "norm."
Day 27 (I think) it's been more than 24 hours since Caley has shown any signs of any further hymoptosis. This time she was able to naturally heal w/o an embolism. Still holding my breath and crossing my fingers. We are sure this will happen again at some point due to the severity of the damage to her lungs caused by cystic fibrosis. They have slowly added in some treatment for her cf and is responding well. She is on around the clock feeds via her gtube to try and catch up on the nutrition loss during the bleeding. She is able to eat but feels full most of the time and take small bites of food. Her pulmonologist will be here tomorrow with a plan of action. I'm pretty sure a discharge is out of the question for the meantime but I am so thankful that this issue passed, rough recovery but she recovered and on her own. Thank you for sticking with us. We hope to be home soon (as short lived as it may be) to be with our whole family.
I've wanted to update for a while but I believe in jinxing a situation....I mentioned to a few people yesterday how things seemed to be heading in the right direction. Until 6am this morning that is....food has been held again. Waiting for the plan of action. We are walking a fine line and a teeter either way will cause one of the two issue to go straight to hell, docs are trying to decide which way to lean.
It's just been one of those waiting days. She's barely awake but in no pain or discomfort, so that's good. She's just tired, really really tired. Her last episode was at 4:30. This is going to go one of two ways....the hymoptosis will heal itself and nothing further will need to be done (until next time) or she will need another embolism procedure. Either way as we sit and wait her CF symptoms become worse as they are untreatable at the moment. They have taken away several survival aerosoled meds, vest therapy treatments and her bipap ventilator...all vital in maintaining her cf and lung function at bay. This is where it get scary....it's a teetering scale and all we can do is sit by her bedside and wait.
Quick update until we know more. Back in September Caley had hymoptosis....bleeding in her lungs. Soon after what should have been a simple procedure (embolism-spl?) quickly landed her in the ICU fighting for her life. So last night felt like déjà vu. One moment she was a happy, smiley kid, the next coughing up blood. She had 3 episodes and stables at about 5:30am. Now we wait....
Day 20.....testing scheduled for tomorrow for the mold in her lungs. Hoping we know something, anything after that. They keep talking "Quality of Life" for Caley but 3 weeks in the hospital when we can do this all from home isn't it!!!!
After our very important Care conference yesterday they are sticking to their decision of no transplant. We have some very important decisions to make over the next several weeks. We will keep you posted on either uprooting our family to another state or giving Caley the best Quality of Life until...
Our Beautiful Caley lost her battle on 06/13/2014. She Inspired Thousands with her Journey & mission of Spreading awarness of Cystic Fibrosis. Caley was 12, a hard working honoroll student. She loved Creating Art, Writing stories and playing with her 2 puppies. Caley had many dreams of traveling and seeing the world! A true Artist at heart to see and create art for everyone to enjoy! Caley spent thousands of hours on breathing treatments and years in the hospital. Caley was always indoors and when she could be outside she wanted to see everything and go everywhere! A few weeks before her passing we were talking about life. That's when my Caley turned and looked at us in a serious but nervous voice she asked us, "Mom, Dad if something goes wrong can you please take me with you where ever you go. Please spread my ashes in the 7 seas so I can swim with the Dolphins and enjoy the amazing places I couldn't go." I felt a cold chill go down my spine and had to fight back the tears. I knew in my gut my daughters disease was getting worse. I had no idea Caley knew in her heart her time was coming. Fighting back the tears with all my heart and with my eyes tearing up I said, "Caley, my Love i will make your wishes come true! I love you Pretty eyes!" Love, Daddy
a few weeks later my Baby girl is gone......
Caley was my brave child with a tough Life! Please help us make my daughters wish come true! Portions will also go toward Funeral services.
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