Long Time Coming

“I just can’t take it anymore….”

There was a true pleading in that. Nyah said it over and over to me that day in November.  The genuine, connected, mother in me, heard her, and agreed. It simply HAD to stop. I told her I was going to start working on what we could do differently.

Once the door to the idea to stop Chemo was opened again, I was awash with all the emotion and reasoning I had attached to it so many months before, when the Dr. told us “0.0 visible cancer cells.”

I thought then, “Great, we can work on prevention without chemo right? It’s done it’s job, the cancer is gone, we need not use such excess just to keep it from coming back.” At that time I again looked for medical alternatives for ‘treatment’ and continued to find none, at least none that people where willing to work on a child with. I was dissuaded. I stuffed my inner knowing and began to disconnect from the reality of continuing Chemo… I had to. I simply couldn’t ‘feel’ my child and allow it’s continuance. We went through all the motions of ‘family’ life while she and I’s connection withered, while she began to treat me with disdain, or at least, dislike. She wouldn’t do a THING I asked of her… we struggled over daily interaction. The months dragged on….

My body turned back to revulsion at the mere thought of another needle or ‘substance’ invading my precious, priceless, innocent, daughter that I was trusted with, to lead, teach and protect. The voice in my head started screaming, “Not even one more time!” And that other voice, the ‘fear’ voice said, “Right, this can’t be done. Remember all those kids across the country that have been forcibly taken from their families because their parents tried to take them off Chemo? How dare you risk that?!” Again came Nyah’s little voice on the air, “I just CAN’T take it anymore….” My course was set… I couldn’t ignore her, I wouldn’t let her suffer another moment, no matter how daunting and frightening the prospect appeared. I couldn’t face myself as a mother, or a human being, if I didn’t do something.

First, there was her very loving, and very frightened father. Could he hear us? Would he support us? I’m very pleased to say, yes. After a time with his own process, support and research, he did. He became our greatest support. We were in it as a family, dedicated to CREATING a path better suited to her care. For truly, our own creation was the key. Intuiting her personal story led us to the answers we sought….

Nyah started life in a very ‘pure’ way. When she was in utero, I declined all the tests offered. I declined any ultrasounds, I took no pharmaceuticals. She was left to grow, perfectly at peace in her unaltered environment. She was birthed naturally, without drugs or intervention. She was subject to only the non-invasive reflex testing, etc. She was given NOTHING but breast milk for her first many months of life. Even while under care for Jaundice at a hospital for 24hrs, we refused an IV. There was no NEED for it. As she grew, we fed her Organic foods with little to no refined sugar. If there was need of assisting her body through illness, she was given homeopathics. She thrived. She would eat everything other parents often expressed they would do anything to get their own children to eat. (Which we’ve found to be essential in home treatment.)

Then comes the Leukemia diagnosis and well, we all know what manner of things began polluting her system. As previously said in former blogs, we invested wholly in as much natural alleviation of damage and upsetting symptoms as we could. A lot of research went into finding alternatives to mediations, as well as the intent and side effects of the drugs she had to have for the protocol. The majority of which disrupt production of, and destroy, rapidly dividing cells. Ie, blood cells, hair, stomach lining, gastrointestinal cells and skin. (Also I’d like to note that ALL the cells in a child are rapidly dividing… it’s how they grow so fast!) That is their intended function, but these chemicals also shred virtually everything they come in contact with. I suffered a minor chemical burn on my hand from caressing Nyah’s forehead while she sweat, just a week after she began treatment…. I can’t truly express what it was like to experience my child withering from the inside out, but I’m sure many of you can imagine the protective force that arises in you when your offspring are in peril. My determination to facilitate LIFE flowing back into her, became my every waking, and sometime resting, endeavor.

We believe we have a very clear understanding of what pollutants she has been exposed to, including what we belive triggered the Leukemia to begin with, and this greatly encourages us that she is inherently healthy enough to overcome the damage from chemo and that odds are in her favor with this type of treatment for cancer prevention.

After extensive research, our first step was to convince the hospital that we were ready, willing and able to treat Nyah ourselves. After consulting with her Dr. and the Director for the Medical Ethics Board we are thrilled to say that they agreed that what we presented, is an acceptable form of treatment. That we could schedule her port being removed and that they would love for us to keep them appraised of her progress. We were over the moon. No fight, no threats, she had had her last chemo treatment! It is a miracle I had barely dared to dream of…. I am grateful and humbled beyond words.

The following is what we discovered and presented as basis for her treatment….

All cancers are 98% to 99% environmentally toxin caused. With the addition of some 80,000 industrial toxins, polluted water, air and foods, it’s no wonder we have seen cancer skyrocketing.

We began immediately to reduce Nyah’s exposure to any and all toxins we conceivably can.  Fortunately we live on a mountain top and already had access to breathe the cleanest air and have the freshest water we can. We have exchanged plastic food containers for glass, stainless steel and earthenware. We have replaced organic foods that came from a can, box or bottle to organic whole foods that we ‘process’ at home. (Previously processed foods are exposed to all manner of things and altered in so many ways.) I have spent the last many months learning how to make EVERYTHING from scratch. The mayo has yet to turn out, but I have had wonderful success with many other basic staples. The whole family have embraced the new way of eating. If we feel like snacking, we grab raw nuts, dried fruits and seeds or make popcorn on the stove top with Bragg’s Amino Acids sprayed on. Yum! I am personally very impressed with everyone’s adjustments. We make fresh green juice several times a week packed with all manner of fruits and vegetables. I even slice off the skin where a produce sticker as been, any one less toxin going in.

We have undertaken a large garden started from non-GMO, organic seeds and we are raising chickens fed on only organic feed and scraps. Nyah works with us everyday to create and care for our food sources and understands the importance of this type of knowledge for her, and everyone else’s, health. We feel very strongly that the only real way to KNOW what is going into our bodies is to KNOW what is in our foods, what has touched them along the way, etc. and our best bet to control that, is to do it ourselves and buy locally from places we have visited. I have organized having a local artisan cheese company wrap our previously arranged orders in wax paper instead of the shrink wrapped plastic they traditionally use. Again, any one less thing… and the girls love to go see, and thank, ‘their’ cow for her sharing her milk with us! Oh, and we also get to watch the process of the cheeses being made.

Nyah loves nail polish but she doesn’t get to wear it anymore until she stops sucking her thumb, which replaced the plastic pacifier she used to suck. Many manner of plastic and chemically treated toys are rotating their way out to be replaced with natural component toys. We hope to soon replace her mattress and pillows to organic, untreated materials for bedding. We also have been playfully designing a home built with un-chemically treated, natural materials that in our dream of dreams, we will build someday. And of course I furnish this home in my mind with un-chemically treated, natural furnishings. It is truly just as likely that something your new couch was sprayed with or the off gassing of your new carpets could cause cancer…. And there are many other small things I come up with in a given day that I alter to fit our new lifestyle. I’d also like to note here how supportive and considerate our friends and family have been in adhering to these changes for us. Asking if this or that is OK for her to have or participate in etc. Thank you!!! We are blessed beyond words with you wonderful people!

We consistently research more products that not only are toxin free but that have also been produced in an eco-friendly, sustainable manner. It is a close second for us to reduce our family’s own contribution to the raging toxicity that is polluting our planet and all those life forms that inhabit it. Hopefully a fully electric car is in our future that we can charge with solar power!

We recognize that we will never be able to control all exposure to toxins. Unfortunately  the ‘well’ has been polluted beyond what we may hope to see reversed in our life times. And so we turn our focus to filling each cell with the nutrients it needs to thrive, thus hopefully leaving no room in it to uptake the toxins that will inevitably pass through.

In search of cell health we find Glutathione, said to be the Mother of all antioxidants, “the most important molecule you need to stay healthy and prevent disease…” writes Mark Hyman, MD in a fantastic, comprehensive blog on the subject that I consider a MUST read for everyone!

http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

Leukemia is an auto immune disease and Glutathione is critical to the immune system being able to function and do it’s job of fighting infections and PREVENTING cancer. When a person undergoes Chemo, most of these amazing molecules get destroyed along with everything else, which can in turn, create more cancers, so one of my first big hurdles was how to boost her glutathione production in a big way. The most effective way for rapid replenishing, as I was counseled, is to nebulize it. There is very little to be found in food sources but the highest levels of it are found in Milk Thistle and RAW whey. Other than that your body has to generate them on it’s own, but can do so better with the aid of exercise, folate, and vitamins B6 and B12. We believe that the very best way to get these vitamins is from their original food source. Hence we attempt to eat a 80% -90% whole food plant based, wide variety diet, though we are heavy on the foods that contain the most phytonutrients.

We have also supported her system with a few supplements like Lugol’s solution of Iodine, (Iodine ensures the apoptosis or the programmed cell death which is essential in the removal of malignant cells like cancer cells or diseased cells. Iodine can flush out chemical toxins like fluoride, lead, mercury etc., apart from biological toxins and can strengthen immune system.)

Here is a link for an article on Iodine. Though it has very strong opinions expressed by the author that you may or may not appreciate, it does have a list of facts farther down that are just that, facts. I have been unable to find my original source for the Iodine information which is the one I would prefer to use here… but something is better than nothing for now.

http://drsircus.com/medicine/iodine/iodine-rescue

Milk Thistle oil, (for Glutithione production) Colloidal Silver (for immune support) and oil of Frankincense (which separates the ‘brain’ of the cancerous cell – the nucleus – from the ‘body’ – the cytoplasm, and closes down the nucleus to stop it reproducing corrupted DNA codes. I am still looking for the best sites to refer you to for more info on Frankincense as well.) All are used on an intuit bases. There are no specific dosages previously created for this, and anyone who would like to employ these options need do the same, but please do educate yourselves on the specifics of the nature of interaction they have with your cells, where and how the products you choose are being produced and the history of the cells to be treated.

To sum up, to the best of our current ability, Nyah is living a life designed to promote nature’s already perfect symbiosis between humans and our environment. She is thriving. She smiles, learns, laughs, cries, plays, creates, interacts, injures herself, heals herself, loves and has gratitude for every bit of it. She is WHOLE, and she knows it. Gratitude and blessings abound…. life is good. :)

Thank you for your continued prayers, love and support for a healthy little girl leading a healthy, happy life!!!

IMG_0405 IMG_4053 IMG_0064

With Peace, Love and so very many Blessings for you all,

Sydney

For those of you who have interest, Nyah’s trust account will remain and any and all donations will be used in promotion of her living a life of health, which may come in the form of an array of everyday products that are natural, toxin free and as close to being sustainable and eco- conscious as possible! Thank you!

Answered Prayers and Prayers to be Answered

The dawn has broken through on our very starry night. Each star having been the ever present glow of prayers said for our darling Nyah.

‘0.0’ was the result of her bone marrow biopsy, after 3 weeks with no chemotherapy. Cancer free. The blessing of this bright morning is unparalleled in the Johnson Universe. Words utterly fail me in expressing. With out them, the ensuing silence of each moment more filling than the totality of bound volumes in existence.

Gratitude. Gratitude. Gratitude.

But words do not elude me entirely. Our life affirming news came the morning after I met Shelby Morris.

I was in the parent laundry at Primary Children’s Medical Center in the ICS unit, looking for an empty dryer, and finding none. Nyah bobbing around with me, poking in the fridge for the snacks we stored there and generally chirping all the ears off in the room .

Both dryers finished, I noted on the list that they had the same room number, so decided to combine them and start Nyah’s load.

At just this time, Shelby came in to claim her items. She apologized for monopolizing all the units but  her daughter had been vomiting profusely for three days and  she wanted to make sure that she always had clean blankets and such from home. Small comforts you know, they are sometimes all you have to offer these littles babes at a given time.

I was moved to offer the homeopathic remedy that had worked flawlessly for Nyah, though I had been scorned by other parents in the offering before. She was very receptive. I could tell she wanted to ease her baby in ANY way possible. And baby she is, at just 11 months old.

After gathering the snacks, Grandma and an energetic Nyah, we set the laundry  to dry and headed to our room, where Nyah promptly told the nurse she had peed and set about with her, to collect  the sample and send it down to the lab.

Nyah thus occupied with her journey to the conveyor, I slipped down the hall with the bottle of Hyland’s Homeopathic Flu, Nausea, and Vomiting, clutched in preparation to give…

I found the room darkened, soft music on the air, a sleeping baby and Mom settled amidst piles of papers and pamphlets. A smile and a care worn expression greeting me.

She accepted the bottle graciously as I inquired after her baby’s condition.

Brooklyn Morris was diagnosed just 3 weeks prior with Atypical Teratoid Rhabdoid Tumor or ATRT. ATRT is classified as a brain tumor though it attacks the whole of the central nervous system at a very rapid pace. It is considered rare with only about 3 children in 1,000,000 being afflicted by it. She has already endured having 2 tumors removed from her brain since then and within just the previous 72 hours as I stood  gazing upon her, sleeping, peaceful and seemingly perfect. What a beauty. I’ve since read that even with radiation, surgery and Chemotherapy, children under the age of three only have a 10% survival rate. My heart was breaking…..

Her twin sister Zoe had undergone Cleft Palette corrective surgery just two weeks before they were made aware of Brooklyn’s condition. Both babes ailing, and my heart breaking….

The girls have a two year old brother named Aiden. Aiden is Autistic and also an amputee. He lost one of his feet due to malformation in utero. With Mom at the hospital with Brooklyn, Dad and Grandpa are left to keep up his very specific scheduling, and again my heart breaking!!!!!!!!

I had to apologize for my blubbering, exclaiming that she must be so tired of people crying for her situation, as she sat quite collected and obviously resigned to the trials at hand. And then she told me that ATRT is a genetic disease and it may very well be present in ALL of her children. That she was waiting to meet another mother whose three children suffered it and were treated together, two in remission, the other one having lost life to it. I then saw the strength of this young mother start to give….. they are awaiting results for Aiden and Zoe.

We have had the great honor of receiving healing prayers for Nyah from the multitudes out there, and now I ask you that share in that, to spare a few extra words for the Morris family, for they are in the darkest part of their night. I want to help these people in any way I can, and I have seen the love and well wishes of many do AMAZING things!! Nyah is cancer free! Let’s not let them shiver and brave the freezing depths alone. We can make a tremendous difference, our light will cut through. I know, because I have lived to see it so in my own life. So SHINE LOVE LIGHT, SHINE!!!

Sydney

What’s behind door number 3?

It had been a quiet sort of day, the kind where everything seems to slow down, take a long breath and exhibit the feeling of release after pent up energy is given course.

There was a release, though not a very healthy one. I am ashamed to have momentarily lost my connection  to ‘The Sage’ inside. She who retains humility, yields against the force of the ego, embraces calm and unveils inner truth.

I gave in, to frustration, fear and my desire to just have it my way! Or rather, have it over. A battle of wills, waged with a four year old over taking the other half of a pill, the former having gone down like it was only the almond milk that chased it. It could be just as easy as her DECIDING to do it. All the more fuel for the fiery tantrum I was to throw…. you’d think I was the four year old….  poor dear… she didn’t deserve it.

No, it’s not a matter of deserving, obviously an adult shouting at a child is always unwarranted, it’s a matter of not taking out personal shortcomings, no matter how momentary, upon others. Most assuredly, not our beloved babes…. though it never ceases to amaze me the malleable yielding that gifts the very young. They express and deal with the moment and hold no further investment in it once it’s over. It’s inspiring and note worthy. There is no judgement, resentment or lack of wanting to share love when it’s over. Amazing.

Again my mantra, “There must be a better way.”

I ask myself how it is possible that our choices involve forcing her against her will, or letting the illness take her from this world. It doesn’t make sense. Why do we think her will is available to force? Because she is a child? Does that make her any less of a human? Does that lessen her desire for happiness and avoidance of pain? Is she not a love light being as we all are?

How many times in my own life did another attempt to impose their will upon my own? Asserting that it was for ‘my own good’? What defines my good? ME!

The same is true for her. Yes, she needs ALOT of guidance. But guiding another is a far cry from controlling them. I respect my children’s inner knowing. When they say they are not tired at ‘bed time,’ I don’t make them go to bed, telling them they ‘need’ sleep, when they are clearly not tired, even if it is after 10pm! Just because I think they should be, does NOT make it so.

I know I hate lying in bed when sleep is elusive, so why then would I choose to force it? For MY convenience. Because perhaps, I’d just like to be done for the day? That behavior does not resonate well with me. I CANNOT KNOW another’s mind. Nor can I KNOW their body better then they themselves do. I can only intuit needs as THEY allow. Just because her vocabulary limits her identifying what’s up, doesn’t mean she doesn’t know. I like to give my children the opportunity to dazzle me with the brilliance they embody. If I pay close enough attention, they never let me down.

What then does it teach Nyah when we force her into painful procedures? That she can not trust us to keep her from pain. What does she learn when we force her to take ‘medication’ she ‘needs’? That she can trust us to ignore her desires and HER OWN INTUITION.

I feel we are facilitating our own demise as parents…. ‘in the name of what’s best?’

Will we ever be able to HEAL this?

Will she choose to forgive….?

Will she choose us in the end….?

“There must be a better way….”

Sydney

Keeping it REAL?

I like to think that just because I believe I know something, that I am able to flawlessly embody it and apply it immediately. I’m easily frustrated with myself when this proves not the case. In short, I still vacillate about my perception of Nyah’s care.

While I feel exceedingly blessed that she has not experienced nearly any of the many possible reactions to all the medications, the fact that they are what they are; Nausea, vomiting, loss of appetite, blood in the urine, diarrhea, liver damage, metal taste in mouth, hormonal changes, heart damage, mouth sores, fever, aches, fatigue, migraines, stomach pain, numbness in fingers and toes, blurred or double vision, seizures…  to name just a few,  continues to impress upon me that there must be a better way. We have researched so many alternatives, lighthearted at any new options previously unknown, only to be let down each time that they aren’t an option for Leukemia……

In circling back to the Chemo course, I try again to see the benefits outweighing the compromise of her quality of life. Though, as I said , her quality is surprisingly good, it still weighs on me that it can all change at any moment. Time may take its toll, as well as drugs yet to come….  I confess that I have never understood compromising what is happening NOW for a possible projected outcome in the near, let alone far, future. 3 years is exceedingly far when ANYTHING can change in ANY given second.

“What good is ‘treating’ her with this stuff that is giving her fevers, nausea, horrible headaches and muscle pain, if this truck takes us out right now?” I had to ask myself on the car ride home, after her ER visit a few weeks ago.   It had just come flying over a blind hill at nearly 40 mph, the driver had no response time, (even as my time slowed palpably)  he hit a snow embankment head on in his attempt to avoid us. His truck nearly rolled over, a moment after impact, to land atop us, though miraculously didn’t. I just drove on by, like it was happening outside our sphere some how, still going 5 mph because the uneven dirt and snow packed road’s jostling effects were hurting Nyah’s weakened little body. Were she not in that state, due to the Chemo, I would have been driving faster… it surely would have been a deadly crash. But would we have been there at all if I hadn’t taken her to the ER because they worry that a fever could indicate a bacterial infection that could kill her?

I mused simultaneously over the potential loss of mine and my girls lives, as I watched the grins spreading over the 4 teenaged boys faces, at the incredulousness of the near death, raucous adventure they were having. I nearly laughed as I began to cry, feeling amiable toward their unrestrained youth, reminiscent of my own, and a trifle jealous of the obvious careless abandon to which they are privy. Such a strange awakening…. a very tangible sort of reminder that though we feel invested and attached to every little thing, that each decision is weighted sum how on a grand scale, it ultimately may mean nothing at all.  Life is so fragile. Funny I would feel  “tangible” about something that confirms for me how illusory this idea of existence is, though it doesn’t feel any less real.

So for this bleep in the time space continuum, I have given myself a little time off of scrutinizing so harshly each decision I have had to make.

So, thanks guys, I’m glad I’m still here to thank you…. :)

Sydney

The Power of Perspective

I have long since followed a path to ‘purism’ in the physical body. I didn’t see it as extreme, just practical. I view this incredible vessel we call a body, as an intricate machine. Every part with its own function and yet each function working in conjunction with the WHOLE. Like any machine, it runs best when cared for properly. If you feed it the fuel it needs and knows how to use, it will run efficiently, barring some manner of accident, for its lifetime. But when you use improper fuel, it begins to gum and clog, stiffen and stifle, each degrade effecting the toll on  the whole. Therefore, I have found it a simple matter to fuel it with the things that nature provided and to reject the things that man has created in labs and such, because I believe that Creator doesn’t make mistakes nor that what has been provided needs improvement. For this very reason Drew and I decided not to vaccinate our children.  I felt that should a disease occur, that it is perfect in its naturalness and it’s treatment is as well, we would address it as we would any other occurrence in life.  To INDUCE possible dis-ease by attempting to thwart that which IS, by giving them an essentially unknown substance called vaccine, felt very reckless and truthfully, ludicrous from my perspective. And in a manner of response to my trust in the perfectness of Creation, along comes Nyah’s Leukemia to challenge everything I think I know.

The body is truly an amazing thing. We pollute it in so many ways and yet it has the capacity with which to combat the terrors we unleash upon it. The idea of purity is desirable, but the human experience is BALANCE. These bodies are designed to withstand LIFE. It seems almost a shame not to allow them the brilliance of their shining potential. For me, that perspective makes palatable the many tragedies we are asked to endure, and more than palatable, makes them blessings with which we grow in our knowledge of ourselves and thus our connection to what we are experiencing.

With each step we take, be it a semi permanent IV termed a Port, implanted under the same anesthesia that aided in a Lumbar Puncture and a bone marrow aspirate, (within the first 48 hours of hospitalization) or the Chemo itself, I have had to adjust my perspective, or parish under it. I was given some advise early on from a very good friend who said, “Stand behind the choice you’ve made, this is no the time to second guess yourself.” As time has passed I have come to realize fully the wisdom in that. It is imperative for Nyah’s state of well-being that I am not viewing her treatment as poison. Nyah’s Auntie sent her a book called “Chemo to the Rescue” and upon first seeing it, I scoffed. I was annoyed and disgusted truth be told. I really struggled to think that Chemo was  a super hero, not death of purity. I flipped through it, unsure I would show it to her at all, and brought it along to her clinic appointment intending to read it more thoroughly while she was ‘under’ for yet another spinal tap. On our way home she was feeling pretty awful, as was I, and I sought for a distraction the same moment the book slid into her view and she asked me to read it. As I did so, I felt compelled to animate my oratory as implied by the words. She bit… she got involved, asked questions and got excited. It was the first time she cared to interact with us regarding her health and treatments. I had tried to solicit interest from her many times before. Asked her out right if she’d like to know what was going on, or that when she did want to, she need only ask…..  Chemo is depicted in the book as a lightning bolt coming out of the medicines, zapping the leukemia cells from the blood. After reading it she happily took her oral meds, that we had fought with her for weeks to take, exclaiming, “Mom, I can feel that little lightning guy zapping those lazy white blood cells and maybe it just hurts a little bit.” ” Hey Mom, I can also feel those cute little red guys carrying air around my body and they kinda tickle!” Giggle, giggle….. That was enough to wake me up to the energetic truth, that she was feeling reticent and afraid before, because I was. And though I had faked my enthusiasm while reading, it became real, as her response to it was REAL. We’d finally connected and began working positively toward healing, together.

Sydney

Cannonball

Have you ever seen a cannon fire? Take a moment, if you would, to imagine the sheer  force, the magnificent speed to an unknown trajectory, the decent….. you’d think that perhaps the impact point would be being given the news of her condition, while sitting in a darkened ER room, family having left, just the two of us and a semi sleepy darling at the age of 4. She reached out to me when I began to weep. She took my hand  and said, “Mommy don’t cry.” Sounds cliché , I know, but it’s the truth. Yes, it was powerful to be sure, but it was the apex to the final destination. The moment of impact came after Dr. Sato had finished explaining the protocol and various specifics of Chemotherapy, to then slide across the table the sheaf of documents to sign. I was very surprised to find my self literally hurled backward, nearly upsetting my chair and myself with it. Though I had listened intently and nodded at all the appropriate times, I hadn’t realized I was floating around the situation with a surreal type of detachment, until that moment, when I was forcibly slammed back into my body and the tangible reality of the present moment. I began to shake and to cry. I just COULDN’T do it, I couldn’t put my hand to such an unimaginable horror, as I saw it to be. Drew on the other hand, must have seen it as a shining ray of hope, or something of the like, for he slid the papers before himself and diligently signed each indicated field. It was strange to have such a commingled feeling of revulsion and relief that he had done it. I think I would have fled, had I been facing it alone. It brings tears to my eyes even now. Chemo is such a burden to bear, and to be the responsible party, to make the decision for another, such an innocent light being, draws from the core a person. The weight is not easily shouldered, nor is it easily shifted. And so here we are, a month later, staying the course.  Doing everything in our power to ease the toll taken on her little body and to allow her to remind us how to be light, smile, and to take joy in the little things. Bearing what she must, inspires me to bare something as well….. myself, to all of you. For what purpose I don’t claim to know, nor do I feel the need to know. It simply IS, just like her cancer and all the consequences thereof.

Sydney

The Beginning…

Hello out there….  The following is my first real post about our journey into Nyah’s leukemia. Whew… did this all just happen?!

We were on our way to her cousin Gage’s 12th Birthday party….     I had known something was going on with her for some time, and like the frog being slowly boiled, who is unaware he’s being boiled, I addressed every little thing that came up, but not yet the under lying thing that was evident in so many ways. I truly try to not judge myself to harshly for not visiting a doctor sooner, it’s just not my way to run to ‘medical’ professionals for every little thing. I thought I could feel it out and have a better handle on it before taking what I consider to be a ‘rash’ action. With reluctance, I scheduled a visit to an integrative medicine doctor, but it was not until the following Wed. My concern escalated during that day and we decided it best to stop at an Insta-Care Clinic to get some sort of ball rolling for a diagnosis. For us, that was a scary step. My husband Drew turned to me after we parked and asked, “Are we really doing this?!” We had both shared concerns that taking her to a ‘regular’ western medicine professional meant that they would likely try to direct us down a path we wouldn’t choose….

A little history on me here, I rarely went to a doctor as a child and never as an adult. If you went to the hospital in my house, you were dead or nearly dead. Perhaps if you had a protruding bone. Otherwise, it was Mama’s treatments. I am allergic to most antibiotics so they weren’t an option even if I was severely ill. There are so many ways to heal a body from any ailment…. except blood born cancer it would seem. We always found another way.

When I found out I was pregnant with our little Nyah, I declared that I was having the baby at home. To which Drew responded, “No you’re not!” We did compromise fairly quickly with a Birthing Center option, but only after I ‘proved my case’ that birth in a hospital is NOT natural even if you try to make it. Nor is it any safer. And actually that being in a hospital, for any reason, was my worst nightmare. ‘Intervention’, of the western sort, is about as frightening as anything I could imagine. I would have shaking revulsion fits at the possibility of C-Section. There is NO GREATER sacrifice a mother can make for her child than that in my opinion. I am blessed to have never experienced it.

So long story short, I have looked at every alternative, to anything, first. The choice to go to the Intsa-Care was costly to our ‘peace of mind’. Most assuredly when they instantly wanted her on oxygen and  to give her a nebulizer with steroids to open her airways and that they wanted her to have Tylenol with cough syrup for the cold and fever she had in addition to whatever was ‘wrong’. This child had never before had ANYTHING that was not homeopathic, except for and incident 2 weeks earlier when she ate some children’s Tylenol chewables because she thought they were candy. Child proof lid my ass!! Anyway, we were terrified they were going way overboard and that our fears were realized. It took some serious convincing on their part to get us to yield to any one of those things. And then comes the “you MUST take her to Primary Children’s Medical Center and she MUST go in an ambulance because she MUST be on oxygen” WTF?! Again the doctor had to impress upon us the NEED for this. Direct us on a path we wouldn’t choose? How about launch us from a cannon!!

More to come as I find time…. Thank you for reading.

Sydney

Hats for Nyah Are Satisfied!

Warm greetings to ALL. Drew and I are so very blessed to have many of you generously donating all manner of things to our family during this challenging time. The response and outpouring from the call, so lovingly put out by my cousin Jessika, for hats was enormous. We have received so many fun kinds of head covers and are pleased to say that no more are needed. If you have already been working on something for her, please continue and send it along. :)

If you feel that you’d still like to share something with this darling little girl, get creative and feel free to share whatever you come up with!

Finally the permanent address!!

PLEASE ADDRESS ALL PACKAGE’S & LETTERS, no matter how they are shipped to:

Drew, Sydney, or Nyah Johnson

6300 Sagewood Dr. Ste H #336

Park City, Ut

84098

Thank you all….

Diagnosis

On Friday, February 17th, 2012 Nyah was diagnosed with Pre-B Acute Lymphoblastic Leukemia.  This blog will be updated as time allows, with her journey back to health, fundraising and inspiration. Please stay tuned.  And pray for Nyah.