Port Out. Band Aids - They Seem Simple....

I had to take off Abby's surgical dressing tonight.

We sat in the tub with the clean water running, heat and fluid surrounding. It wasn't an ordinary bath and did not carry with it the joy that usually ensues when I fill the tub. We were both terrified. What was coming next? I will admit, my intrepidation almost that of when I had my first child. I just had no idea what would be hiding under that thin sheet all we could see was dried blood. When the port went in I was in such a state of shock I am sure that I must have changed the dressing numerous times, but as with many labors the memory is gone. We both knew it had to happen. This wouldn't be a party, but once again we'd do it together and in my heart I would hurt her again. It was painful, but we pushed cancer one more step behind us. For 15 minutes we worked in the tub; she was exhausted already and I was such a coward.

My inner voice said, "She's too scared..take a break...get out." We'd have to get out. In my heart, "Please God let this get easier, I am not sure I can do this.". Inner voice again,"Yes you can." To the bed, our family bed, we went and locked the door.

Alone in the room.

Miraculously, I found one adhesive removal pad . This is like a tiny alcohol pad that contains some magical orange smelling oil that makes taking off tegaderm so much easier. "Thank you,Thank you God!" we finally caught a break. The rest of the process went smoothly. Normally it takes at least a couple of these pads to do the trick, but the universe was gracious and extended the oil in that little pad for us on, and on, and on.

Finally the bandage came off and so did the lock on my heart: happiness, joy, amazement, nausea that our ordeal is over. IT IS OVER. I won't have to pull another damn (feel free to insert any profanity you see fits) dressing off or poison my daughter with the life saving toxic chemotherapy again . There will be more pokes, more mountains, more tests, long-term late effects...but the experience and device that solidified my daughters cancer was real is gone.

Abby's port now lives in a jar above our stove and not in her body. I felt so angry at the stupid little piece of plastic the entire time it was in her body...

She's such a champion.

My advice.

Feel Good. Be Happy and Carry Your Children with all the love that you have inside of you no matter what battle comes.

Blessings

K.

I'm in, too.

For several years now I've wanted to do something like this. Ever since I rushed to Seattle to help a friend who suddenly found herself there with a very sick baby. I remember taking leftovers, canned peaches, children's books, a blanket, and a few baby carriers.

And before I left I had watched her snuggle her little boy in a mei tai for the first time. He seem suddenly so comfortable and she was in awe of how wonderful such a simple piece of fabric could be. Despite all the tubes trailing about and the nurses poking and prodding and the alarms going off, that baby boy was where he needed to be and his mama had him where she needed him. For that moment they both seemed oblivious to their surroundings.

That was where the seed was planted with me. And now Susan has watered it by starting a lending library to help families "wear cancer out." Childhood cancer seems so unfair, so mean, so uncontrollable. But even if we can't make it all better in an instant, sometimes just making life more comfortable and easier for the family can make a huge difference.

Many of us have experienced the joy and benefits of babywearing in our happy, healthy family. Imagine what it can do for a family who has been jolted by the reality of fighting a childhood cancer.

Come help. Check out the website and become a fan on Facebook. Donate to the cause. It's a great one. Spread the word and help us wear cancer out.

Building a Bridge

Tingly Toes is ready. We are going to build a beautiful bridge. A bridge that will bring the world of babywearing to the world of childhood cancer. Two worlds that are different and yet the same. Worlds of comfort and support. Worlds where moments are savored. Where children and babies are cherished.

Is there anything more precious than holding your baby? Comforting your child when they are in pain? Knowing that your touch, your love is helping them heal?

I am so excited to build this bridge, and help bring the awareness of babywearing to families that are fighting childhood cancer. This bridge will be incredible.

Getting Here

Here - is a simple way to describe my topsy turvey somewhat normal somewhat insane life. I have two daughters; Sarah is seven and Abby is just four.

When Sarah was born, I was 29 - just beginning to dig my feet into corporate America having never really heard of Attachment Parenting or AP. All this started really with my husband racing home from chiropractic college and telling me that he had met this "great" midwife and me thinking, "Are you nuts?". Of course by the end of my pregnancy we had agreed on a friend and one of his patients who was an obstetrician, I was doing a water birth, and hosting home birth/doula classes out of my home for a local CPM. My friends became tattooed women some of which had a handful of children and one who at last count was at a bakers dozen. I felt half way in over my head and the other half exhilarated. What I didn't know was that all of those books I was reading about instinctual birth and parenting, co-sleeping, and baby wearing would eventually play a part in saving my second daughter Abby's life.

In 2005, after a long time trying I screamed Abby into this world. My labor was short (10 hours), my birth was powerful, and there she was. My friends and family were around me, I was filled with deep sadness, anger, and regret (not feelings I expected). I spent many nights looking at Abby, studying her every curve, bump, birth mark, soft spot. I studied her not in the way I had Sarah, but in a way that worried me often. Always there was a feeling of something being wrong. Something not right. I could never put my finger on it and certainly she did not exhibit any outward sign of illness whatsoever. Over the next two years I struggled to create the bond I had with Sarah in Abby. I co slept, I carried, everything naturally and without consideration.

Fast Forward....

Summer of 2007 came. Abby had been weaning herself and had given up the sling in early spring, try as I might to keep her in I had resigned it to the back of my van. I'll never forget Messy Fest. A festival here dedicated to kids getting messy...It was there on that day, when I felt the first twinge of true fear. That first cough, she was tired all of a sudden. She wanted that sling so desperately. "Hmmmm, must be going through a growing phase"...or so I thought. Each day her walking got less and less, and that cough it kept coming and going. Never quite bad enough to see a Dr., but never gone. It made my skin crawl every time I heard it...We had been so committed to naturopathy, it had always worked for us, ALWAYS, six years never a hiccup.

Things got better for a while and Abby started in a preschool a couple of days a week. Her feet were back on the ground, and then another infection. This time impetigo...immediately I thought, her immune system must be off..."That's weird.". Its a virus, Its self-limiting, it will go away, and it did. The cough returned.

November.

Abby was back in the sling full-time again and asking to nurse all the time. "Weren't we done with that in May? ", "Must be developmental, she's gaining independence, wanting comfort, that cough though?". I just felt lost, unreasonably fearful. Then the night came that I laid down next to her and felt that heart beat, an unnatural, uneven beat, it was like sludge under my hand, rapid like a bird and then missing something a lub dub lub dub lub.....lub dub lub dub................lub; and then fear was so overwhelming, so panicked I had to do something, say something to someone...and so I did. I went to my husband first, a fruitless journey he was logical and unconvinced, not because he was heartless, but because good science would say there was nothing. A week passed, and I finally rallied the courage to ask my sister (a CV-OR Nurse) to listen to Abby's heart - this was complete Tabu as it was unsaid, I rarely followed an alopahtic and she NEVER listen to my children. FEAR. Her listen was too long, too careful, and at the end her response was too professional. "I should take her in....make an appointment, just drop by urgent care tonight. ". We stood together, and she must have sensed my fear. Then she said it, as non-gallantly as possible, you know "What if it was Leukemia?". We both laughed at the absurdness of our even thinking something so dramatic and the day went on.

Abby's cough returned this time in full force, Abby was sick and visibly so, we were en route to my parents, even my husband thought we should call our friend a physician and try an antibiotic, we tried one, then another. My dad commented that we could take her down to Children's St.Louis. I just wanted to get home. To wrap her up and run as fast as I could somewhere away from this impending doom. The antibiotic did help, the cough subsided, but.. "was it my imagination or were her lips turning blue?" That was it...

The next two days were a blur, I consulted my husband who was getting ready to leave to go out of town. He continued to resist the idea of taking her in, and in the end said "Do what you want." , Breakfast at the local restaurant, the waitress "she's not looking so good." , The general store, "isn't she feeling well?". Those were all my angels. They were the ones that pushed me beyond my common sense and sledge hammered me into my intuition. They were also all women. I took Abby for labs and announced to the physician who I was sure would think I was nuts, "Something is wrong with my daughter and you need to find it today because I will be divorced by the end of this visit." , they listened, thank god! They drew labs, three tubes. Did an Oxygen Saturation test (which by the way is worthless), and looked. Then they sent us home. Ughhhhhhh.......

The next 24 hours were hell, Abby fell asleep and I ( the half - Hindu, half - catholic convert) prayed unending. Abby was so still, and my prayer was intuitive, it was specific, " Please God, I am sorry it took me so long to listen, I am sorry I didn't pay attention to all the messages before now, please God, please don't let my daughter die." And I knew in my heart, I knew she was critically ill, everything I had been shoving out of my mind for the last three months all of it was right in front of me and I couldn't deny it anymore. I waited, waited for permission to rush her somewhere, struggling with what was reasonable. The labs took forever, I called and called finally I said "I am not getting off the phone until someone gets these labs back!". I would have stayed on hold forever at that point - I didn't have to wait any longer. The doctor picked up and my heart sank...he relayed they had been spinning Abby's blood. "He was sure this was a lab error, but just in case, perhaps I should take her to the local children's hospital today, He would call ahead, Which one was closer for me??". I asked what the spin had been; Hemoglobin 3.5 (lethal). I again put on the happy, calm, collected face made arrangements for Sarah to stay with a friend "just in case" and picked up my sister en route.

By 11 or so that evening on November 30th it was confirmed. Acute Lymphoblastic Leukemia. Abby's hemoglobin was 2.9 after the first transfusion. Her levels were at CLOT on all levels on the first spin. She was 100% blast cells with NO visible healthy cells. (That picture at the very top right, that's Abby two weeks before she was diagnosed getting hot chocolate at our favorite spot.)

"Did I wait too long?", "Why didn't I listen sooner? " - all questions I have asked. The truth is I feel that God placed me in that ER on that night for a specific reason. I believe that the universe sent me each message and that I heard it in just the "right" time. I think that every mother has that voice waiting inside her heart and that we learn from our day to day parenting how to listen.

We are now two years into her journey and the light and hope ahead is all encompassing. She is on her road to freedom and soon will taste life without cancer. With that said I will also say that Cancer is an elusive monster waiting in the dark, hiding in places that you would never think to look, it wears a cloak of invisibility and its stealing our children; I would like to say "its" not going to get mine, but I am far too educated as to the ways of the beast to say that. What I will say is that no matter how long it takes, no matter how great the struggle I will standby my daughter as she puts on her armor

everyday. I will fight side by side with her until there is absolutely nothing left of me. I will support the science and the research so that other children live, I will not play by the rules if that means losing.

God put me here for a reason and I will not shut my eyes no matter how scared I am. These kids are little miracles, I would go so far as to say they are the little Buddhas and Christs walking on the planet right here in front of us. They are showing us how not to suffer, even when they are suffering in ways we can only imagine. They are lights unto the world and their journey, however traumatic and horrible has a message of hope. They are the hope, we are the hope. Our love for each other, for our children, for our neighbor is what will end this fight (and many others). Each one that goes before has left behind a footprint and a path for my daughter, or your son, daughter, mother, sister, brother to find and continue upon.

Our carrier isn't an everyday occurrence anymore when counts are good we rarely pull it out, but when steroids hit and the "tingly toes" start she's up, safe, and snuggled. Sometimes smiling, and as is this weekend - not.

Sumo Guy

Cancer is big. It's not easy to knock down. But we will not give up. We will keep pushing.

~Abby, You keep on pushing. Your Sumo guy is falling. :)

It's only the beginning.

We're just getting started. We're motivated. We're dedicated. Let's DO it!