May 28, 2010

I am submitting this article to local papers today.

Fundraiser supports testing, disease treatable
By Camara Cassin

Baby Anaya Cassin-Potts, first written about in March, has now been given a diagnosis of Infantile Krabbe Leukodystrophy. This rare disease causes demylination in the brain due to lack of a specific enzyme required to metabolize fats. It can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who, at the age of three or four months, will begin showing symptoms of Krabbe Leukodystrophy.
The outlook for kids with Krabbe is bleak. In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing. Seizures may or may not occur and life expectancy is less than 2 years.
The saddest part about this disease is that once symptoms are present it is untreatable. Krabbe can be tested for at birth and treated with an umbilical cord blood transfusion that contains the healthy stem cells of another baby. These stem cells make their way to the brain and produce the enzyme that is required. Children who receive this treatment continue to develop and have a much higher quality of life and a longer life expectancy.
British Columbia does not test babies for Krabbe Leukodystrophy at birth. In some states in the USA testing for Krabbe is routine. Anaya’s parents are working to put together a fund for Nelson parents at the Kootenay Lake Hospital who would like to have their newborn screened for this disease with a simple heel poke. Each test must be sent to a special lab and paid for independently. To accomplish this they are holding a Gala Dinner and Dance Fundraiser at the Prestige Inn on June 11, 2010. Proceeds will also go to the Hunters Hope Foundation which conducts research, and to the family to help with expenses. Tickets are available at the Prestige or by calling 250-505-0275.

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Baby Baby Mine

Baby, baby mine
who's only here for a time
I've been waiting
for someone like you

needed a teacher
to show me the truth
and I've found her
in the mirror that is you.

Baby, baby mine
you're like the stars that shine
so beautiful,
and so far away

the sun is shining
shining down on you
and baby, baby mine
this love's what's true

And when the night gets cold,
and the darkness is too thick
I will surround you with my love
and bring you light

and when you're on your own
know you are here inside my heart
I will bear you up with love
into the light

baby, baby mine
only here for a time

I can't go on, I'll go on

I had an anxiety attack yesterday.

It started at a cafe where I was waiting with Anaya for Brent to finish an appointment. It happened that I sat next to a girl I know who has lost her children to the ministry because of her lifestyle choices. I try to practice compassion and non-judgement but I couldn't help getting angry. Angry with God, angry with her, angry with the world. I wanted to scream out loud how unfair it is that MY baby, who was so wanted and so well taken care of, is fading away. How lucky this woman is, to have healthy babies, and it seems she doesn't care enough to be there for them.

While these thoughts were going through my head Anaya started crying, then she started choking. Everyone in the cafe was looking in our direction. I helped Anaya through her spell and got up, paid the bill and left.

I felt an incredible sadness descend upon me. It settled about my shoulders and my heart like a cold fog. I shivered and tears spilled from my eyes and ran down my cheeks, falling on her golden head like raindrops. Wrapping my arms about my little love, we continued on down the street. I wished we had known when she was born that she was sick. She looked so perfect. There was no reason to suspect. Our moments turned into minutes, days, months, and now we are 8 months past the time when a stem cell transplant would have saved my daughters life. Would she have crawled by now? Would her little giggle resound through the house? Would her first word be Mama?

We could have found out with a simple blood test. We are want to provide the means for future parents to get this test if they want it at the nelson hospital. It's the same heel prick that they do for the usual newborn tests. We could have helped her but now it's too late for that treatment.

The tears kept falling, the anger building into frustration, my sobs bubbled out of my chest like unwilling prisoners. I felt nauseated and trapped, wanting to run, to scream and kick, wanting to fly out of my body. I wanted a healthy baby.

I met up with Brent and we went to the pharmacy to get Anaya's meds. I sat down on a chair and buried my face in her golden hair. She slept peacefully, my heart hammered against my chest and I wondered if I was going to have a heart attack. The anxiety of all my fears and grief and anger gripped me and I wondered if it would kill me. That made me laugh at my own thoughts. How ridiculous! I realized I was having an anxiety attack and forced myself to slouch into the chair and focus on cuddling the baby. I felt her breathing, her warm, trusting little beingness. I felt my own breath and slowed it down to match hers, I felt my body in the chair. I felt the air moving through my nostrils.

I began to feel my love for her radiating towards me, mirrored in the eyes of the people watching me cuddle the baby. A warmness embraced me and my heart slowed, the nausea faded and the anger disappeared. I realized that I will go on giving her more. All of me cares, all of me finds joy in her. I would not trade this journey for another. She's a keeper, if only I could keep her.

The impermanence of all life is what makes it beautiful and wondrous. Even when I can't go on, I'll go on.

Wednesday May 19, 2010

Brent and I just finished changing Anaya's feeding tube. It was not a pleasant experience. It must be incredibly uncomfortable. But now it's done. It is placed properly through her nose into the stomach and is taped neatly on her cheek. I hope she can forgive me these pains and discomforts that I cause in my efforts to care for her.

Solara helped to feed Anaya yesterday. She is an awesome big sister in this situation.

I'm exhausted this evening and I think I'm going to finish up feeding the baby and head to bed early.

Monday May 17, 2010

Anaya spent the day with her Nurse, Joanne, today. It is the first time I have gone to town without her. I needed to pick up a prescription, some diapers and breast milk. On the way I stopped and had lunch with Anaya's dad, Brent. It was like a first date. We are hardly ever alone together. It felt new and weird to be without our "little bird".

I had time today to think about what I may do with myself in the future. I think we may foster children that have special needs, or that are sick with degenerative diseases. I have been learning so much about caring for a special child, both physically and emotionally. I feel as though it is incredibly important that these children get the love and care they need. I think I'd be good at that. Anaya is training me well.


Upon returning home I was informed that Anaya had an excellent day. She was not too upset to stay with Joanne, which is a new thing. We have a new medicine called scopalomine, which helps to dry up her mucous. It really seems to work, although it sedates her slightly. It's so nice to not have to suction her so often. She really dislikes it. It makes her choke and gag and turn bluish. It's awful.

I've been talking to Autumn and Tom today, who are coordinating the next fundraiser on June 11. There has been interest in knowing more about Anaya's disease and the Hunters Hope Krabbe Leukodystrophy Foundation that we are contributing to. Please check out their website at www.huntershope.org

Here is an excerpt from their site.

"KRABBE DISEASE

Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems.

Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire.

When the enzyme GALC is deficient, it produces toxic substances in the brain, causing myelin loss, change to brain cells, and neurological damage.

Krabbe Disease has four phenotypes: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid and death occurs in early childhood in the infantile types.

One in 100,000 live births in North America are afflicted with Krabbe Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. Yet, awareness about this disease is very limited. Until recently the only treatment options were limited to symptom management and palliative care.

Now, a new and revolutionary treatment, Cord Blood Transplant is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders."

The babies must be tested for the disease at birth and treated right away. It is too late for Anaya to have this treatment. We hope to set up a fund for Nelson parents who wish to have their baby tested for this disease as it is not currently done here.

Saturday May 15, 2010

We are at the airport waiting to board. I just walked through the airport carting two bags, Anaya and the car seat. Although it was incredibly difficult I feel very proud of myself. I made it to the gate. :)

I am happy to be going home. I miss my family and friends. I miss having Nurse Joanne around to help with Anayas needs. Being away from home sure reminds you what is important to you. I love Brent and Solara and our dogs and our garden and going to the bakery on Saturdays. The list of ands goes on.

I feel so very blessed for the love and support in my life, in my family's life. Without those of you who love us and support us we would be floundering in a hopeless sea of grief and despair. You all help me keep my wits when the world has turned upside down. Thank you again.

I also feel blessed for having had the life journeys that I have experienced. Having Solara as a daughter taught me how deeply I could love having Anaya showed me how much more emotion my heart can hold and the variance of it. Very intense.

Boarding now!

Thursday May 13, 2010

Anaya and I get to go home on Saturday! I'm excited to return to the green flowering spring. It is so dismal here, brown and leafless. Back home where I don't have to talk about death anymore. Where we can live in the present and enjoy Anayas life and the sunshine. I still pray for a miracle. I still believe she can heal if that is what is meant to be. It is her destiny to simply be herself and live however long she does.

Thursday May 13, 2010

Well it looks as though there will be no G tube surgery. We are at the Alberta Children's hospital. The Docs say that they believe Anaya is too weak to undergo the procedure. They say it's likely that if they breathe for her during the surgery they will have to use the machine to breathe for her for the rest of her life. They say her body will forget how to breathe. Then she would be in the ICU until she died.

So we are not going to do it. I think dying in the ICU would suck. Home would be much better. Hopefully that is still a ways away.

The docs are convinced the next stage of the disease will be seizures. They've been teaching me how to recognize a seizure and what to do. I find the thought of watching Anaya struggle with seizures extremely upsetting. I pray with all my heart that she will be spared that.

We talked about end of life care and medicines to make her comfortable. Apparently morphine is good for that. They say you can suffocate to death comfortably while high on morphine. Who knew. It decreases the awareness of respiratory distress.

Quite a dark day. I can't wait to go home.

Tuesday May 11, 2010

Mothers day turned out to be a surprise. Brent got the day off at the last minute. I was glad to have him here. My family gave me an old potting wheel. I'm excited to learn how to use it. It was lovely to spend the morning with my family. In the afternoon Penny took me to the driving range for my first golf experience. I had fun.

Today we fly out. I'm a bit intimidated by all my baggage but I'll live through it.

Anaya is doing well today. Not too phlemmy, very restful and cuddly.

Friday May 7, 2010

My daughters seem to both be sick today. Anaya is her usual phlemmy self and Solara says she has a headache and feels "about to throw up".

Anaya fell asleep early and I lay her in the bed for Brent to watch her. I then took my homeopathic first aid kit and some melatonin and went into Solara's room. Having already gotten three big glasses of water into her and dinner, I knew that perhaps rest would be the next best thing for her.

Exhausted and nauseated, my little girl cried fat little tears as I tucked her into her bed. I gave her a dropperful of the liquid melatonin and consulted the "Homeopathic Remedies" book for what I should do for her nausea. After some reading I gave her a pellet of Nux and a pellet of tabaccum. She asked me what it was. I said "Very small medicine sweets, hold them under your tongue." She did as I asked and lay back against the pillow.

I rummaged through her bookshelf, realizing with sudden clarity that I hadn't gotten Solara any new books for quite some time. I am not reading to her often enough. I thought to myself. Oh no! There's nothing on this shelf I haven't read to her a thousand times! But just then I saw the spine of a little brown book peeking out from between the rest.

"The Velveteen Rabbit" By Margery Williams. Ah ha! I thought and pulled it out. I haven't read this one since I was a little kid. I turned back towards the bed.

I pulled the covers up over my bigger baby girl and sat down on the edge of the bed. I began turning the pages, keeping my voice soft and sweet, lulling her to sleep within the first few words. But I couldn't stop reading. About halfway through the book I realized that with Solara sound asleep I could read in mind, and I closed my mouth and finished the book.

Believe it or not there are beautiful pearls of wisdom in "The Velveteen Rabbit". I'd like to share my favorite pearl with you. It is a conversation between the Rabbit and the Skin horse one day in the nursery.

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

I finished the book, closed it's pages and crept from the room.

Thursday May 6, 2010

Have you ever seen the movie "The Matrix?" Do you remember this line? "Do you ever have that feeling where your not quite sure if you're awake or if you're dreaming?"

There are times lately where I wonder if I'm stuck in a dream. Is this horrible disease really stealing away my baby? Wasn't she perfect just a short time ago? How did this happen so quickly? Where did that perfect future go? The truth is I grieve things that haven't happened yet that will never happen. I already miss the sound of her little baby feet running across the floor. Or the giggle that would have come from tickling her little sides, watching her pick her first flower, seeing her delight in the fuzziness of our dog, eating her first birthday cake with her hands and sucking the remnants from her fingers. I wanted to hear "Mommy, I love You" and though I know she does, I still miss it's loss! How crazy is that? Missing something from an uncertain future.

I've been a bit off today. I'm overwhelmed and sad. Anaya has regressed so far. Her actions are less mobile than those of a newborn. In addition Anaya has been extra phlemmy. Suctioning her throat out scares her and it hurts my heart to have to do it. The main cause of death in kids with her condition is pnemonia. We're told it's really only a matter of time before pnemonia will come and take our baby away. Oh God, perish the thought. My little love, I pray you will heal or go peacefully and without suffering.

Anaya's Do Not Resusitate order came in the mail today. It means she's allowed to die peacefully and without intervention should the time come. We don't want to subject her to the trauma of life support machines. When it's her time, we will hold her gently and kiss her and try to be brave. Her bright soul deserves a better body. I believe she'll have one someday.

These sadder thoughts sneak in to our lives - we are only human. People think I'm strong and doing such an amazing job with my daughters - but I feel so weak. Nothing I've done has slowed the progression of the disease. I don't even know if she can see me anymore. Her cooing is gone, her smile is gone, sometimes I wonder if she's in there. Through it all I hold her close, snuggled up to my chest where it is warm she seems most content. She still knows me. She must be in there.

I'm not always strong, I'm not always sane. Today I shouted at my partner for no good reason, insisting that mowing the lawn was terribly important. I feel so helpless in my environment. I wish I could go out and mow the darn grass! This helplessness discourages me. I feel the need to accomplish things, to see positive change.

I can't have a going away BBQ on Sunday. My house and yard are not fit for any kind of event at the moment and there is nothing I can do about it. Oh the silliness of my embarrasment over this, I know - but it's there. I can't pull it off so I have cancelled it. I apologize - I was so looking forward to it. Mothers day has never had so much meaning to me, or so much emotion as it does now. I am a motherless daughter mothering my dying daughter. I think it's brutal that Brent couldn't get the day off work to be with us on what could be Anaya's only mothers day.

On top of all of this I'm terrified about going to Calgary Children's and hearing big dark pronouncements about my daughter said in monotone in the bad news room.

I know my fears are only thoughts, but my emotions are valid and I am going to let them sit here with me for a time. Then I will let them settle away overnight, hoping that tomorrows dawn will bring a sunny day and a bright new attitude in my head and love shining in my heart.

May 4, 2010

Brent's mother Marlene is here to visit for the next week. She arrived today just before dinner. It's nice because she's going to fly back to Calgary with Anaya and I when we go to the hospital on the 11th. It will be less intimidating to go together then it would be for me to go with Anaya by myself.

Today Anaya was phlemmy. We had to suction her a few times. Then I remembered to give her the homeopathic remedy that I bought for this purpose. The homeopathic drops of Silicea and Stramonium really seemed to help. Joanne and I also gave her some melatonin before her morning nap, as an experiment to see if it would help her sleep deeply enough for Joanne to hold her, or for me to set her down. The combination worked like a charm. We were able to set her in the stroller and go for a walk without too much of a mucous issue, and she slept for quite a while before awakening. The other day Anaya had a homeopathic consultation with a local lady named Margo, who is going to do some research to find a more specific remedy to help Anaya with her condition.

On our walk we picked ditch growing daffodils to put on the table at dinner. The sunny yellow beauty of daffodils brightens my day. I love their "Honky" looking faces :)

It looks like Brent has to work at Hellman on Sunday the 9th, which means it'll be us girls for our mothers day/ Anaya's going away BBQ. He said he can't get out of it. I feel sad about it but I suppose I'll just have to deal with it. It will be so nice to have friends and family over for Anaya's BBQ. Neighbors and friends are welcome to attend. Drop me a line at my email. maraglow @ gmail.com and I'll give you the address. It will be an afternoon event. I hope it will be sunny and we will hang out in the yard, watch the kids play, eat some food and chat while listening to summery music that will float from the outside speakers. I hope to see you there.

May 2, 2010

The last post was not intended to raise such negative emotion. I should have relayed a more positive story. I have many more positive experiences than negative ones :)

This weekend has been wonderful and tiring. Anaya's grandparents visited, Solara had a sleepover, we got some onions and sunflowers planted, we attended Meeri's BBQ in Nelson and Anaya did well through all of it.

I feel a bit anxious about taking Anaya to Calgary for the G- tube surgery. I pray that she'll come through it all with flying colors and come home with me. My fears are the opposite.

My fears try to carry me away from the present into the past and the future. My friend Penny helps keep me grounded in the here and now. She tells me my negative thoughts are just thoughts, and that I am much more than the sum of my thoughts. It helps to vent it out and let it go. Nurse Joanne is also an incredibly grounded presence.

We are focusing on the here and now. Each breath, each cheek to cheek - every special minute - that is where I've been. I apologize for not blogging as often but I promise to share any pearls of wisdom I may find along the way :)