An update... from Michelle (post 3 of 3)

A few weeks ago, my tot was having trouble falling asleep in his little bed. He insisted on sleeping with me in the spare room. I asked him if he was sick and he shook his head vigorously. I knew something was bothering him so I leaned him and kissed his rounded cheek. I reminded him that I’m his mommy and he can tell me anything. He whispered softly, “you are”. I repeated his words and asked him what he meant. He said it again. I repeated my question and snuggled him close to me. He whispered loudly, “You’re sick mama.” He had never said the words out loud before. I wasn’t ready to hear him say it now. Up till that moment I believed that he didn't really know what was going on. I burst into tears despite my urgent desire to be in control of my emotions. It was his turn now. I couldn’t stop the waterfall steaming down my face. He jumped into my arms and held me silently. I could hear his breathing quickening, almost panting. I quieted and he told me he is so scared. He hears me throwing up. He’s afraid the doctors aren’t going to save me. They are taking too long mama. He wants to fix me with his toy tools. He loves me so much and he’s afraid that I am going to die. I gasp. I didn’t even know he knew that word. I feel like I have just listened to the confessions of a 15 year old and look at his tiny face and hands to remind myself that he is only 2 years old. I remind him too. I told him that he must lean on me, tell me if he is hurting and how he feels. Suddenly he is in my lap in the cradle position (like when he nursed). He started to howl like a newborn and I rocked him with tears dripping off my chin and soaking his pajamas. I wept silently while he gasped and sobbed. I started to sing softly to him and he slowly calmed.

Soon only the chudders of a child's cry remained and I still rocked him while speaking softly. I tell him that mama was born with something broken inside of her tummy that needs to be fixed. Mama needs a new part. I tell him I won’t be sick forever. At least I can promise him that. I tell him that there is a special doctor who can fix me. A look of relief washes over his face and he smiles before pronouncing, "I will meet him mama. I want to meet the doctor who is going to fix you." I can`t imagine the high and mighty Dr. S would be able to look at his little face and deny his request. In fact, our sweet tot has been to the transplant clinic with me only once. It was after his visit that they activated me on the liver transplant list.
I do believe that my son will see me well again. I believe I will dance and work and lift and climb and ride and run like I used to one day. I tell him this and he is happy. I cannot believe this amazing child came out of my body and is my son. He is truly a living, breathing miracle. Thank you. I love you little boy.

And now for a quick health and wealth update....

After being rejected by Toronto and BC once again in back to back losses we were burnt out, done and depleted. We have been living this white knuckle ride as if each day could be my last. We cannot continue like this. Jarvie, my mom, Meghan, Tracey, Heather and literally everyone I know has done everything we can to get this surgery done. I literally got on my hands and knees and begged the BC transplant surgeon to do the surgery. I told him quite simply that I don't want to be dying anymore, I want to be recovering or dead. One or the other. I asked him please set all of us free from this truly insane process. He responded by telling me that it was really his decision at the end of the day. It is one of the most difficult of his career. Keeps him up at night. He needs to feel in his gut that the time is right. Leave it with him until Thursday. We shot ourselves in the foot by going to Toronto because they said no too. Ugh... Thursday- no call so I initiate contact. No dice. See you in January.

I am quite sick now. The disease is literally oozing and popping out of me and I am drowning in its force. I cannot believe that I will be rejected again when I return to the transplant clinic in January. My kidney’s are bloated with backflow of blood (shunting) from the spleen. The pressure between the organs has resulted in ginormous varices in my torso which are now protruding from my skin and look like bloated worms after a rainstorm. I simply cannot get the upper hand on my pain or my nausea or my fatigue or the feeling that I have been poisoned. I am losing the memory of wellness now. I watch myself moving in videos when my son was first born and I am relieved to hear my laugh and see how easily I moved and danced. It hurts to wrap christmas presents now.

Well.... I've had enough. At the beginning of November I took a long hard look at the finances and the pit of debt we were falling into as we tried in vain to make ends meet. This and we were getting so much help from our friends and family. Unbearable! In November I attend another fundraiser despite my deep regret for needing more help. I felt the now familiar sting of humiliation as I see the familiar faces that fill the room to take from their means and gift our needs. These are people who struggle as much as I do! I know I would do the same for them and have, but now it is different because there is no end in sight. I feel hopeless.

Resolve: I have to stand on my own 2 feet again. The fact that I cannot pay my own bills has demoralized me. I could stomach it when I thought it was going to be a short term problem but now I must make my life work better. This hell could go on for another year and that`s just waiting for the surgery. I keep reminding myself that the surgery is only the beginning. The real battle for my life is the post-op recovery. I will pray every day and I will assume the salvation. My goal: self-sufficiency, creating a happy, stable as possible environment for the tot.
To this end- we met with the real-estate agent- can we sell? We talk to the mortgage broker- can we do anything there? Despite what should have been impassable barriers we were approved for re-financing and lowered our monthly expenses considerably. We also traded our minivan (after some fancy footwork) for a cheaper ride. And the hardest decision of all.... we re-evaluated the nanny. Having full time care was a decision we made because we thought surgery was imminent and at the time I was at high risk for going into a coma. And, my son was still a baby. Now, he is almost 3. He is seeing, listening, feeling, watching and learning so much every day. He has to spend too much time worrying about his mama so we decided it is best for him to be cared for outside the home.

We still have the nanny 1 time per week when she comes to clean and visit, but the Tot is now in pre-school 2 mornings and daycare for 3 full days per week. It is a wonderful structured happy and safe environment where he is well cared for and plays well. He has already made good friends there and comes home full of stories and all tired out. We are at just about the same speed by the time I pick him up. We are all adjusting but it feels better already. As luck would have it my mom and her husband arrived just as the nanny vacated so the sting of her leaving wasn’t as bad. My mom tells me she will likely stay for good this time. Again, I am grateful.

I would like to send a big shout out to God. Thank you! I don’t know who’s been granting all my wishes and prayers but they’ve been busy! Jarvie was assigned 2 more accounts this week!!!! He is concerned about being away from home more now with his increased workload but we are going to try and make it work. Bring on the frozen dinners and bring home the bacon baby! I'm so proud of you. "See ya with all my heart!"

I’m not sure yet but it seems like our financial ducks are finally lining up in that row they’ve been running away from! We haven’t dotted our I`s eyes or crossed our `T’s yet so still and perpetually praying...

Thank you all so much for your friendship, love and support of any and all kinds. I am eternally grateful. If we attain self sufficiency my prayers will have been answered but I know better than to count on it. Things change all the time when you are waiting for a transplant and living with a toddler!! I wish you all a happy healthy holiday season. Thanks for listening. xox

Making up for lost time (Michelle post 2 of 3)

Waiting for a liver transplant has affected every area of my life. But one of my favourite impacts has been the time I have been able to spend with my grandparents on my dad's side. My Granny is 93 and Gramps is 83 or there abouts. For a number of reasons, I never got to know them as a child. I moved to Canada at the age of 20 and began the slow process of getting to know my father`s side of the family. I wanted to matter as much as the other grandchildren who had been bounced on the knee, combed their dollies hair and collected shells on the beach in front of their house. But, you cannot recreate these bond forming memories as an adult so I have felt like an outsider. Slowly over the last 13 years the relationships have grown but progress always hampered by life’s many commitments.

My grandparents have been married over 50 years and are still on their honeymoon. Their secret as far as I can tell is that they always admire and put each other up on a pedestal. They have a lot of reasons to love each other which makes it easier I guess!

Gramps admires Granny's strength. For example, a few months ago Granny fell and broke her hip and leg in 4 places. She went to the hospital, waited a few days for surgery, had surgery and got up and walked the within days. She was out of the hospital within a month and now doesn't even use a walker. Not long before this Granny lost her thumb on a cruise when a metal door slammed shut on it one stormy night at sea. She held the thumb back on and waited the several days it took to reach land and receive proper medical attention. By then it was too late to save the thumb. Granny often remembers her thumb fondly and thanks it for all it's contributions to her life but she didn’t miss a beat. She went to physiotherapy and got full function back at the age of 92. 1 year or so prior to that Granny fractured 3 vertebrae in her back reeling in a large fish. She waited to get back home and get x-rays and treatment. Once again she made a full recovery.

After the fishing accident my Grandfather decided it was time to move out their 3 story house in Sechelt. He thought it was best to get Granny off those slippery stairs. This is how they came to live in a condo near our home.
During Granny's most recent injury to her hip, she was hospitalized for several weeks. I really wanted to be there with her. I know how boring hospitals can be! During my first visit I overcame my self-consciousness quickly. Soon I was seated beside her bed with Gramps standing watch over us. At 93 she is still beautiful. We spoke quietly for awhile. People passed in and out of the room. I felt surrounded by kindred spirit. The pace was slow, the air quiet and yet there was a quiet and determined drive for recovery and intention of strength.

In the visits that followed I combed my grandmother’s hair and placed her Hawaiian flower clip just so. I encouraged her through sips of soup and we made fun of the food. She was enjoying the effects of the pain relievers and amused herself and us with a series of one-liners and her opinions on life. In the months that have followed I have made repeated visits out to my Grandparent's place. We sit there in the quiet and speak when we can, eat when we can and nurture each other through pain, illness and gratitude. We celebrate the successes big and small and enjoy the beans of energy we are afforded each day. Sometimes our plans are foiled when one of us is too sick to visit. Most recently I was honoured to decorate my grandmother’s tree. I hung snowflakes that were over 100 years old crocheted by my great grandmother. My Granny spends her life creating, painting and crafting; there were many handmade treasures stamped with her signature, a lady bug.

My Grandparents are the strongest people I have ever met. I know the strength that flows through them was passed to my dad and courses through my brother and me. It feeds my spirit every day. It is the breath of resolve and endurance that proves any circumstance is possible and all outcomes are affected by determination of spirit. I am so grateful to have found friendship with my grandparents and to have been given the opportunity to make up for lost time. Thanks for the visits, the cooking lessons, the this'n'that's, the questions, having most of the answers, listening, caring and being there. I love you both so very much. Here's to many more visits and successful sausage gravy feasts!

Midnight musings- by Michelle (post 1 of 3)

It is 12:09 midnight at the Way house and nothing is stirring except this mouse. My fingers are nibbling at the keys. My dad used to like to sit and listen to me type his hand written journals or transcribe his reading. He used to say my typing sounded like a gerbil. The clickety-clack was so fast and relentless.

My dad was a story teller and writer. He used metaphors and wit to re=tell the adventures of his life. The most important story he told or wrote was of his relationship to Rasheed, a young man he befriended in the inner cities of Camden New Jersey. My dad volunteered to move there and be part of Urban Promise, a mission group who assisted the impoverished in fixing their homes and enrolling in schools, learning the trades etc. During his life my dad kept a journal which he wrote in every day. He treated his self-imposed 3 page per day quota with a devotion rarely found. We converted the journal entries from that time into a book which he titled 'The Camden Diaries'.

In the weeks leading to my papa’s death he spoke repeatedly about his writing and his book. It was his dying wish that his book be published. My brother and I promised him we would do our best but he wasn’t satisfied. We tried to secure a publisher before he passed and my brother, thinking we had been successful told my dad he was going to be published. A look of relief passed over his face that I had not seen before. He smiled and wept with joy. He died believing this. His book is still not published.

December 10th was my father’s birthday and the 2 year anniversary of my being admitted to Richmond General Hospital for stomach pain. The pain turned out to be the first flag waver of end-stage liver disease. When my husband drove me to the hospital that night I believed my symptoms were due to pregnancy. You may imagine my disappointment to learn that quite the opposite was true. My liver was dying; I was not creating a new life inside me. This, after I pre-emptively bought a 7 seat minivan to house our growing family! I’ve always been an incurable optimist.
My dad believed that certain people were born into this world to bring positive change to people’s lives in big ways and in small. He called these people Advocates. Advocates are called to face negativity with fresh ideas, positive change and creativity. I asked my dad if he was using the word advocate to describe what others may call an Angel. No. Advocates are aggressively pursuing positive change. Angels are too nice! He told me he was an advocate and so was I. I didn't mind being called an advocate. I looked upon it as an honourable expectation.

My dad was given a year to live but never assigned power of attorney or wrote a will. The only provision he cared about was his journals which he left to me. All his affairs and everything he owned were left to my brother and me to sort out. Some people were offended and dumbfounded by my father’s refusal to assign power of attorney or write a will. He never faced the end during his last year. He fought only to live and assumed this outcome until there was no possibility of it being so. And, even then he wouldn’t commit it to paper. Ahh... papa. It was your birthday December 10th. I guess I’m missing you.

Changes

Hello everyone! I wanted to give a little update.

Michelle had her pain management appointment recently. I attended as a support. Unfortunately I can't say there was any ground breaking changes to her treatment plan. In her doctors defense, Michelle's case is complicated and pain meds need to be chosen carefully due to her liver failure. And with any pain management plan there is often trial and error. So at this point she is to take meds around the clock and try to get the pain under control; rather that what she had been doing, which was trying to tough out as much pain as possible then take something when it was unbearable. A few days into this plan and she's still trying to find some relief. I feel so badly for her, her pain is so intense.

A big change has occurred in the household. Michelle was finding it hard to get the rest she needed with little man seeking her out throughout the day despite the nanny, and also feeling that he was struggling with seeing her in bed and unwell so often. The nanny has been let go and replaced with care out of the home for little guy, and help to come in for cooking and cleaning. There are still some kinks to be worked out in terms of what to do in evenings when Jarvie is in meetings or there is an emergency. But it was important for Michelle to feel in control of her home and family, so they are going to try their best to make it work. All monies raised will continue to support the family with paying for care for Tater tot, assistance with cleaning and meal preparation, and any supplemental medical needs for Michelle. Michelle's mama is in town for the holidays, so this is great for the family!

Please pray for Michelle. That the medical team will empathize with her struggle and put new wisdom and energy into her care. That she will get the treatment she needs to end her suffering. And of course for the family's well being.

Thank you all for your continuing support. A special shout out to the Dellolis clan who purchased a laptop for Michelle! This is fantastic! She can stay in touch when she can't get out of bed, and it will be a great resource in the event of a hospitalization. Thank you!

Tracey

"Return-It" For Way To Live!

Starting Saturday, November 7th, you can drop your empty bottles at a participating Return-It bottle depot and donate your refund to WAY TO LIVE. When you receive your receipt for your bottles, just write WAY TO LIVE clearly on the back of the receipt and hand it over to the clerk behind the counter. They will keep track of donations for us to put into the Trust for Michelle.

Ironwood Bottle & Return-It Depot: 11020 Horseshoe Way
Blundell Return-It Centre: 130 - 8180 No. 2 Road
OK Bottle Depot: #2 - 8100 Capstan Way
Regional Recycling Richmond: 13300 Vulcan Way
Steveston Bottle Depot: 2 - 12320 Trites Road
Ladner Bottle Depot: 4930 Elliott Street
Tsawwassen Return -It Centre: 5636 12th Avenue

It’s because of your support that WAY TO LIVE continues to provide financial assistance to the Way family. Many thanks!

~Way To Live Committee

Progressing "Normally"

I’ve been told it’s my turn to write again. I’ve been hiding in the cookbook I’m trying to put together. I’ve amassed hand written recipes from my 93 year old grandmother and my Italian grandmother, my stepfather’s mother as well as other recipes past down to me from the cooks I have known in my now 35 years. I cannot sleep again and so spend the nights doing brain exercises, typing recipes, listening to the house and stirring a plan of sustainability, health and happiness for my family.

I am surrounded by the heavy breath of a windstorm and watch the leaves struggle to get to the ground while the wind rips them from their path. The leaves surrender their resistance and swirl together through the night headed in chaos for another place. Nate is calling for me, the wind surprises his quiet sleep.... I’ll be back.
I have moved him now to the other end of our house. I’ve folded out the bed in the spare room so we can snuggle together through the storm. It won’t be long before his little hands start to search for me in the bed. I must write fast.

The pain in my body is surpassing the fear, fatigue, nausea and misery as my biggest hurdle. I’ve been told to manage it around the clock now. I’ve learned my kidney’s have started their decline. Although still functioning normally they have swollen in response to the enormous stress between my organs and the toxins that flow through my blood, unstrained by my liver and spleen.

I’ve alerted the docs to what appears to be the continuous decline of my condition and was assured that nothing would be done about it again this week. In an almost cheery manner I was advised that the outcome of Thursday’s meeting in response to my recent ultrasound (that reported the enlarged kidneys, 4 possible cancer sites in my liver and shunting amongst other unpleasantries) that everything was progressing as normal. I was supposed to be relieved to find out that there are other patients on the liver transplant list with kidney’s the size of footballs. So, not to worry. I want to ask how the football sized kidney’s are supposed to fit in with the 9lb spleen but decide not to bother. We end by thanking each other and agreeing to speak again if there is no improvement in the pain after tripling my dosage or if I end up going to the hospital.

I get a letter from my insurance company. It’s time to apply for CPP. The Canadian Government Disability benefit for people who are severely disabled. This on the same week that I cross that line from 34 to 35. My birthday. I go through a box of letters I have saved in the closet of my son’s room. He sits in the closet with me as we open them. Some are colourful, some are cute and some even sing. These are cards that were given to us when he was born. The names of so many people who sent a card or attended a baby shower. Over ½ the names are people I worked with. My job was more than a job to me. It was my passion and the people I worked with were a family to me. I miss every day there. I know, people always want what they don’t have but I felt that way when I worked there too. I will fight to walk through those doors again with name badge around my neck and clicking my heels down the hall. Waa hoo! Can’t wait.

I’ve turned over all the leaves and begged on my hands and knees. I’ve laughed, cried, written and said. I’ve listened, I’ve waited, I’ve held my tongue. My family, my husband, my mother and my devoted friends have done and said all we can. I want to surrender now. Trust that my time for life will come and be offered. I pray for the strength to face each day. I pray to rise above the pain, to stay real to myself, to keep my feet planted in truth and life to find a way to fulfill the needs that each day brings. Thank you for your prayers and support both silent and spoken tangible and intangible. I love you.

Michelle

Thank You!

Thank you to all who came out for our pub night on saturday! It was a really nice evening, I hope you enjoyed yourselves also : ).

Michelle continues to need prayers. As she puts it, she used to have good days, and now it's good hours (and unpredictable). They are facing some big decisions right now for their family, please pray it will all come into place for the best.

Tracey

Over Another Hurdle

Michelle is making a come-back! After days of being unable to eat or get out of bed, Michelle is feeling well enough to get up and even out a bit. Pain has been a huge issue for many months and seems to only be getting worse. Upon visiting her specialist yesterday it was decided her family doctor should help devise a better pain management plan. Michelle can't get in to see her family doc about this until December!!! It's crazy times with this H1N1 flu stuff, but not until December! I'm so frustrated for her. A recent ultrasound also shows new evidence of pathology, but no changes have been made thus far to Michelle's treatment plan.

Our Pub Night is coming up in 3 days! We have a great prize to raffle off, a $75 Relaxation Massage at the Lovely Raintree Wellness Spa! There will also be a 50/50 for anyone who would like to participate. We will have t-shirts available for purchase, and as a special we will be selling our ladies black t's at the same price as the regular-cut white t's, $20! Thank you to those who have already reserved your tix, we'll see you saturday!

Tracey

In Rough Shape

Michelle could definitely use some extra thoughts and prayers right now. A few days ago she developed some symptoms that are concerning ie; fever, increased pain, some difficulty breathing, lethargy, etc. Her doctor is uncertain if this is related to her liver failure and spleen enlargement, or if maybe she has developed a pneumonia or flu. The decision was made to keep her at home while symptoms are managable to reduce the chances of a nosocomial infection(picking up an infection at the hospital).
Thank you for keeping Michelle and her family in your hearts.

Tracey

I'm Still Here!

Sorry all, I've been sick and Michelle's been away, so I've been slacking in the blogging department.

Michelle had a little get-away to California with the permission of her doctors to travel. She had a great time, although towards the end there was a shift in the intensity of her pain. She just got back home this week and is trying to get a handle on things. Her dear California friends fundraised to pay for her travel expenses, how sweet is that!

With Michelle back we were able to tell her about a surprise we were working on! One of our members is friends with an amazing professional photographer, Sherri koop, who has offered to do a photo session with the Ways as a gift! Sherri takes amazing photos! You can check out her website at www.sherrikoop.com. The family will have photos to treasure forever : ). Thank you Sherri!

A few months ago Michelle's friend Eva decided to take on the challenge of a run to push herself to new limits and raise funds for the Way family. Eva unfortunately sustained an injury during training, but she pressed on and recently walked her race in Michelle's honor! Thank you so much Eva for your perseverance, thoughtfulness, and generous donations!!!

Our November 7th pub night is fast approaching. There are still some tickets available for purchase. $15 and you get a burger(beef, veggie, or chicken), fries or salad, and a drink. Contact me at way-to-live@hotmail.com or on facebook for tickets : )

I will try to be more on top of things here on the blog, thanks for bearing with me!

Tracey

Making Peace

All viable options have been exhausted. Neither Toronto nor BC are prepared to take the risks involved in transplanting Michelle at this point. Hearts were broken all around, especially Michelle's. After some reflection she has decided that she needs to take a break from all the fighting and just let things be. Our trust is in the hands of the doctors now. Please continue to pray for the Way family; that they can enjoy their time as a family, that Michelle will find comfort, and that the doctors will know when it's the perfect time to perform Michelle's surgery.

Tracey

Pub Night November 7th!

*Michelle will not be going to Toronto. It's complicated. More info to come. Please be in prayer for her.*

We felt it was time to do another fundraiser for the Way family! Tickets should be on sale by the end of this week. Please email me at way-to-live@hotmail.com, or contact me on facebook, or contact any of the other Way To Live committee members you know to get your tickets.

*Details*
date: November 7th at 5:30pm to as late as you like ; )
place: Hudson's Landing Pub in Marpole(vancouver)
cost: $15.00 per ticket
dinner: available 6pm to 9pm. Includes veggie, beef, or chicken burger; fries or salad; and either a house wine, on-tap draft beer, or a hi-ball.
extras: we will be doing a 50/50 draw, and possibly a raffle.

We hope to have an excellent turn-out like or first event!

Tracey

Waiting For Friday

I have exciting news: Dr.Liver* is good looking just like I suspected!
But back to reality...

Michelle had her appointment with Toronto today, and her facebook status pretty much sums it up:
"Michelle is knowing nothing yet. Still in TO and find out the verdict on Friday. Then meet with BC transplant on Monday. Bing Bang Boom. We'll see!!!!!!!"

She met with Dr.Liver today, had major blood work done, and will head home tomorrow and wait for Toronto's decision on friday. This is all great timing, as she can go to her BC meeting armed with info from Toronto. She may have options, what a blessing!

Michelle and Jarvie described the Toronto team as very competent and confident, which is so awesome!

Here's to praying for great news on friday, whatever that may turn out to be.

tracey

*name changed for anonymity : )

In the T dot (did I just say that?)

Michelle landed in Toronto yesterday! Who knew that the Toronto Film Festival would make flight planning and hotel booking such a challenge? Yesterday was the closest flight booking they could get for her Tuesday appointment! I told her to make the best of it and have a mini vay-cay ; )

Tomorrow is the big appointment. Who knows what will come of it. If they offer to start at square one with an assessment, then Michelle's odds are likely better here in BC. It took almost a year to get on the BC list, who could do that all over again AND be so far from home.

Please pray that no matter what the doctors say, that something good comes out of this trip.

Thank you all : )
tracey

My Heart Is Racing...

Toronto has accepted Michelle's referral!!!

She has an appointment Sept 15 in Toronto to meet with the team. They will assess her in person and let her know what their opinion is. It is very possible that they will decide to transplant her sooner than BC could. This is absolutely amazing news! We are all so excited around here! Hope was never lost, but we've been given a much needed boost : )

If Michelle is taken under the wings of the Toronto team, there will be a lot to work out. Temporary living arrangements(up to many months!), who will stay in Toronto with Michelle for support, visits with her husband... Nanny has agreed to relocate east if the stay will be extended, so that Tater tot can be with his mama.

Much more info to come as it trickles in! Please keep Michelle in your prayers!!!

Tracey

A Few Sunflowers In The Mud

Well I just wanted you to know it’s not all bad in my world. There’s been a few wins, quite a few laughs and many many dairy queen banana milkshakes to see me through all of this mess. For starters, I can drive again. I managed to fenangle the doctors into giving me my license back. I noticed quite an improvement in my memory and ability to keep my mind focused to complete a task. For example, I can now start making toast and actually get to the putting jam on top without starting the laundry ½ way through the process! Before the improvement the time spent by the bread cooking in the toaster was enough for me to forget about it completely. I would find it the next morning, hard shriveled and definitely neglected. Even my son had taken to repeating his requests over and over again until I fulfilled them. I’m sure most 2 year olds do this sort of thing but I found it rather helpful!

Anyway, I’ve made many successful batches of toasts and even a few full course dinners without mishaps. The doctors did their assessments and hesitantly approved my driving again. This little win was important to me and has allowed me to use my beans to get us out and about when we feel up to it. Yaaa Hooo!! I got a bit big for my britches after that and felt I ought to go back to work. I consulted with my friends and family who laughed at me and then discussed it in a round about way with my docs who asked me what I would do about all the pain, the days spent in bed and the constant nausea, bloating, itchiness etc. Oh yea- there’s that. I could probably report to work for about 1hr per day 1 or 2 days per week. Sounds like a model employee to me!!

With all this waiting, I do get rather impatient and feel the need to grab control of something. Find a way to be of use. My husband tells me I already have a job, to live in now and to stay alive. It doesn’t pay well but it’s important!

Then there’s the time I called Tracey to invite her to a fun filled night of errands at Walmart. We completed our task and then decided what was needed for us mothers and the chronically ill was an evening at the local watering hole. We piled in, Walmart bras and all and enjoyed a round of Shirley Temples while we watched the crowd mingle and dance. We laughed till our guts hurt (in a good way) and reported for home before the little ones even knew we were gone. And just to add a cherry to the top of our sundaes.... we got hit on as we left!!! Just a reminder to never underestimate the power of the unexpected or the local bar. : )

Anyway, just wanted to let you know, I still laugh, still eat, still run errands and now...I even DRIVE!!!

Love to you and thanks always for listening and taking a minute, and for helping me carry my sorrow, my burden and my fear. Always celebrate, always love, always laugh. I’m going to throw the party of a lifetime when this is over. And... you’re invited!!

Michelle

Home Again

Michelle is home again. No new findings much to the surprise of everyone involved(including the ER docs who expected to admit her long term). Pain management discussed. Thank you for your on-going prayers.

Tracey

Prayers Needed

Michelle is in hospital this evening. She is in incredible pain that they were unable to manage at home. She called her medical team and they directed her to go to the ER. We waited about an hour in the waiting room before she was admitted. It was very busy, thus she was placed on a stretcher in the hallway. One by one the hallway filled with more stretchers. She convinced me to go home. I felt terrible, but I was in the way standing at the head of her stretcher. Her mom will be joining her soon, hopefully by then Michelle will be in a real bed. Please pray for some clarity on what is causing the pain, and for some much needed pain relief.

Thank You
Tracey

Amazing Story

I can't seem to make it a direct link this morning. Copy and paste the following into your browser if you'd like to read a stroy that will make you go "wow!".

http://www.nytimes.com/2009/08/18/health/18tran.html?pagewanted=1&_r=1

tracey

Who's Scan Is This Anyway???

So Bizarre. When Michelle had her most recent ultrasound, there were some peculiar findings about the spleen condition and that there were gallstones. We all wondered if they were reading the wrong scan! Who knows, but when Michelle actually got the written report it read that there were no gallstones, but rather kidney stones, and the spleen was very enlarged. We'll probably never know what went wrong, it just kind of highlights how uncertain this whole situation is.

But on another note...
Our hearts are racing and our stomachs are in knots. The Toronto referral has been signed for at the other end, someone has it in their hot little hands! We want to celebrate. Why you ask, when nothing has been decided yet? Well, there is so much possibility that can come from this! The worst case is that they will agree with BC, but at least Michelle will know she exhausted all her resources and has been given the clear to continue waiting by one of the best in the world. Please pray that the Toronto team will review Michelle's file diligently and make the best decision for her well being.

Tracey

Being Candid

Well it feels like time to write again. I have just read the blog after almost a month. This gesture of friendship from Tracey and all the phone calls, visits and patience has been a life saving gift. I am struggling to keep my spirits afloat these days. I want so much to be the brave, strong and fearless girl I thought I was. But instead I am very afraid, very overwhelmed, very guilty and very ashamed. I never meant to be sick for so long. I never meant to need my friends and my family so much. I never meant to be this useless for such a long time. I don’t know when this journey ends or what the outcome will be but I know it is out of my control.

I spent the last 3 days in bed again with fatigue, nausea and pain. My husband, the nanny and my mom filled in all the blanks and kept Tater tot and the household rolling along. I am so blessed to have so much support. Is it wrong to want to push it all away and stand strong on my own two feet again? I don’t want to cheapen my relationships with too much gratitude. A friendship holds itself together with mutual admiration, respect and common enjoyment. What if I am unable to be enjoyable?

I told my son that I was sorry to be so sick this week and that I missed him while I was sleeping in bed. He responded, “Sometimes it’s not easy being big. Sometimes it’s not easy being small.” These are words from one of our favourite bedtime stories. He wrapped his arms around me and gave me a big kiss. His love licked the wounds of my guilt.

I have rallied my head around getting to Toronto. My family and friends have urged me to go, my doctor’s here have supported and recommended that I go. I must be able to tell my son that I did everything I could to be here to love and raise him. Meghan and her family need an end as well. We all need to move on. Our lives have been on hold for too long. Tomorrow I round up all my paperwork to send to Toronto. Then I wait. It’s 3 weeks I’m told. Will they go forward? They are the best in the world. They do more living donor liver transplants in Toronto then anywhere else in the world. If we wait here, we may wait too long. It feels like we’ve already waited too long. I’ve sat nose to nose with my specialist. He gave me 45 minutes of his time. He tried to explain why the BC transplant team is waiting. I could tell it didn’t altogether make sense to him either. He said he thought I should go to Toronto and that he would never question their opinion.

While I wait I pray for days with a few beans so that I can be here, living life, loving my family, making good decisions, being strong, being loving, being grateful, remembering always to put one foot in front of the other. Work on the right now and hopefully I’ll get somewhere along the way.

Thank you my sweet little tot for your big boy, big hearted response to life. I know it must be hard to have a mama who’s not always there. Thank you for opening your heart to nanny Elizabeth and to all the people who are there for you when mama can’t be. The world is a big one and I know you will be stronger for loving and trusting more people at your tiny age. With all my heart and with every day I pray that my difficultly will not hurt you in anyway. I can see it has already affected who you are but you are bubbling to the surface with your sweet face in the wind. You are my little friend, my courageous boy. I love you.

To all my friends and family; I thank you for your prayers, your support, your kindness and all your love.

Michelle

And Just To Stir Things Up A Bit...

It appears Michelle has gallstones. She had her gallbladder removed many years ago, so this was kind of a surprise. It is not necessarily the cause of her new pain. They do suspect they have to be removed though, as they present an opportunity for infection and Michelle can't afford that. Her pain remains poorly controlled. This evening I had a phone conversation with her while she lay in the bath tub, trying to find some much needed relief. Will this new turn of events delay things further? Will it change her odds in getting accepted into the Toronto program? Because she didn't have enough stress...

Her banding went well, although there were changes noted in her esophagus due to the numerous varices and banding over the years (correct me if I got that wrong Michelle).

The wait for a new liver has been excruciatingly long, and Michelle's reserves are running thin. It is heartbreaking for anyone to have to go through this.

You're always in my thoughts and prayers,
Tracey

The Scrabble Genius

It's been a rough few days for Michelle in terms of pain. Last night a trip to the ER was in order, as I could hear the anxiety in her voice; this pain was new and unrelenting. I'm sad to report, great success was not achieved in controlling her pain, nor were the staff able to pin point the exact cause of the pain. I must say though, after 3 rounds of pain meds and some intervenous gravol, Michelle still kicked my butt in Scrabble!

Michelle was back at the hospital this am as per the night docs instruction for an ultrasound. At this point she is no farther ahead in finding relief. The pain is incredible, her abdomen feeling full and clenched in spasm, accompanied with fever, and today the addition of a migraine. She is scheduled for banding surgery tomorrow, as well as an appointment with her specialist to review her current symptoms.

Please pray for Michelle to find relief from her discomfort, and that her doctors will have the wisdom to diagnose the issue and keep her safe while she waits for a new liver. Mama bear is coming out tomorrow to be with Michelle while a little extra support and TLC is needed. Looking forward to seeing you J, safe travels : )

Tracey

Second Opinions

After a gut wrenching phone call with the BC Transplant Team, Michelle's live-donor surgery is on hold, and it seems she may have been bumped down the list for a cadaver liver. Of course if there are others worse off, then it is understandable that they are higher on the list. What makes it hard is Michelle has Miss M pleading by her side to get on with the live donor surgery...
Michelle's heart has been breaking and her anxiety levels are high.

So you may have noticed I've been away from the bloggy world. Well we've been working on a few things. Michelle's specialist and her family doctor have both given their full support and encouragement in her being referred to the Toronto Transplant Clinic! She has been working on a letter to attach with her doctor's referral. The letter has been bounced between her 2 editors (her mother and myself : )), and she has come up with a fantastic piece. Her doctor will attach this to her own, as well as labs, images and consults, and hopefully the referral will be sent off in the next couple of weeks! Toronto has an amazing Transplant program, and do far more live liver donor surgeries than BC. They have awesome statistics and are leading the way in organ transplantation!

This is an exciting possibility for Michelle! Please keep Michelle and family, and Miss M and family in your prayers.

Tracey

ADDRESS!

We have a new mailing address! Please send stuff for Michelle to:

Way To Live
PO Box 105-4500 Westwater Drive
Richmond, BC
V7E 6S1

We have our old PO box for a few more weeks, so anything that has been already sent should reach us in time to be collected. Sorry for any confusion!

Thanks!
Tracey

Generous Outpouring of Support!

Support for Michelle and her family is taking off like wildfire! Another Amazing Friend has stepped up to the starting line and is about to embark on a run in Michelle's honor! Please follow Eva's journey here http://eva-runningwild.blogspot.com as she pushes herself to new limits, just as Michelle does every day.
Thank you so much Eva! Once again, the Way's are so blessed to have such terrific friends holding them up as they wait in uncertainty.

Tracey

"People Helping People"

Jarvie's Uncle belongs to an organization called the Fraternal Order of Eagles Maple Ridge Aerie #2831. The Fraternal Order of Eagles is an international,non-profit organization that unites fraternally in the spirit of liberty, truth, justice, and equality; to make human life more desirable by lessening its ills and by promoting peace, prosperity, gladness, and hope. The motto of the Organization is "People Helping People". How great is that! This year they have chosen Michelle's family to be one of their charities!
The group is organizing a fund raising Golf Tournament and Dinner for August 9th, 2009, at Heather Hills Farm in Maple Ridge. Partial proceeds will go towards the Way family, the rest of the proceeds will go towards other charities that the group serves.

***Details***

Event Date: August 9th, 2009

Tickets: Golf is open to both Women and Men, so get your foursome and join the game! $45/person for golf and dinner, $10/person dinner only. Must be paid in full by August 4th, 2009. To order tickets please email Sharon at shardel@shaw.ca. The hall only holds 100, thus tickets are limited.

Payment: cheques should be made payable to FOE Maple Ridge Aerie #2831 (I imagine cash is acceptable too).

Location: Heather Hills Farm 25494 - 117th Avenue, Maple Ridge B.C.

Dinner: steak, baked potato, corn on the Cob, salad, and dessert

*There will also be a silent auction!

Please direct your questions to Sharon at shardel@shaw.ca
For more information on the Fraternal Order of Eagles go to www.foe.com


So much kindness, it's just awesome : )
tracey

Where Does One Begin...

I was with Michelle this past Thursday when she had a phone conversation with a transplant team member. I am not sure what is okay to write at this point, or what will even remain consistent, as they seem to change their minds a little too frequently than comfortable. I will say that the news was disheartening, and Michelle is very low right now. She will be seeing her specialist tomorrow. Hopefully there she will get some answers to her questions, some clarity, some guidance. Prayers are needed that she will be strong in this appointment, and that Dr.E will be compassionate and proactive.

After the above phone call, Michelle was in tears, then proceeded to cry that the day was supposed to be "about you, and now it's about me". My heart jumped into my throat. The about me part was getting over my fear of flying, the about her part was her life in her hands. No forgiveness needed. Not now, not ever. Michelle does not speak easily or freely about her suffering. I feel so sad when she feels like she is burdening others by talking about her illness or the terrible symptoms she endures. I love you for you, liver disease and all, I'll take the whole package.

I am so proud of Michelle for being so strong. I am proud of her for sharing her story; I believe it encourages us to embrace empathy, to realize how precious life is, and to strive harder at using ourselves for good.

I flew on an airplane (twice!) this weekend. The 3+ hours I spent 1 to 1 with a pilot the day before my flight probably helped a little. But mostly I realized that if Michelle had the courage to handle her situation everyday, then I could get on a silly little airplane. You help me all the time, more than you'll ever know.

Tracey

Back To The Drawing Board...

So if anyone noticed that I said "pencil it in", it's because I have witnessed the indecisiveness of this whole process. I was actually going to put that I was "announcing with cautious hope...", but didn't want to seem like a downer. Yesterday Michelle received a call from the transplant team, her surgery date has been given to someone else that has been deemed worse off. Biggest bummer ever. Or maybe it's a blessing in disguise(a whole liver in the near future?)...I guess they have to buckle up and keep going on this ride. There are dates being discussed for September now, hopefully to be decided this thursday.

Michelle is due for banding of her esophageal varices again. Already? Last time she didn't have any banding for the first time in forever! This time she is pretty sure there are some varices in there, as she has been having difficulty swallowing. And her overall pain is pretty constant. Despite all this, she keeps trekking along. I'm starting to think she has a bit of a bean bank. Seems she can pull a few beans out of no where, but then ends up exhausted and feeling poorly for days after.

I'm so disappointed for the Ways right now. Not even so much that the surgery won't likely happen on the 24th, but mostly that they were given hope and had it swept away only days later. What a roller coaster : (.

Tracey

Break Out Your Calendars!

With much excitement I am pleased to announce that Michelle and Miss M. have operating rooms and 3 surgeons penciled in for August 24th!!! There is still the possibility of a whole liver before then, but if nothing comes up by that date, then they will proceed with the live-donor surgery if all goes well. Please pray for both Michelle and Miss M. during this time as the surgery becomes more of a reality, I know there will be unique fears for both.

But for now...*happy dance*!!!

Tracey

Gratitude

Hi sweet friends!

I am grateful tonight. I found kindred spirit this week-end. The first was an in a Narcotics Anonymous meeting where I celebrated 2 years of clean living for a healthy, strong young man. I sat surrounded by family and friends and listened to confession after confession from these healing, broken spirits. Theirs was a horrendous tale of misery then, and now, a huge climb back and full of setbacks. The theme they chose to discuss was “never give up” and “gratitude”. They wept and described the many gifts of sobriety in an effort to stay strong one more day. I felt their desperation, their physical and emotional pain, there regret at the cost of their disease to the ones they love. I felt their joy, their pride in working the program, staying strong one day at a time. I was grateful to be amongst such bravery, honesty and emotion. Thank you!

Then a victory of quite the other kind. My husband softly nudged me, the smell of fresh coffee wafting upstairs. My stomach turned and my eyes refused to open. My tot is still asleep too. I snuggle back in to the warmth and relative comfort offered by the bed. The phone rings- Tracey’s up with her family. They’re on their way to Stanley park to cheer on our friend Kevin as he crosses the finish line after running 21 kilometres. He has fundraised to pay for our nanny and has raised well over his goal. If he can run I can get up. I manage to get my clothes on. One glance in the mirror reveals a shocking sight! Oh well- I better hope we’re not judging the book by it’s cover today! Tot wakes up confused but excited. I tell him we are going to watch Kevin run a race in Stanley park! “Oh... BIG park” he replies. I explain that Kevin is racing so that we can have nanny Elizabeth. His eyes widen and he says earnestly, “Thanks Kevin!”. We pick up Uncle Cookie who entertains the tot exceedingly well and we zoom down to the race. Somehow we miss seeing Kevin actually cross the finish line but managed to find him shortly afterwards still gasping for air and hungrily ramming bananas and water down the hatch. He separated for a moment and circled a tree. I think he was gathering himself. It seemed to have helped! I cannot imagine the stamina it must have taken to run 21 kilometres without stopping. His face was full of life and pride. The spirit of endurance dripped from the trees and echoed from the pounding of feet on the pavement. I can keep running too! Thank you making us all feel proud today Kevin. I plan to finish my race with the same spirit you finished yours. I hope you won’t mind if I need to circle a tree every now and then as we go along. You are a champion!

Michelle

The Marathon

Today Kevin ran his 1/2 marathon in honor of Michelle and her family. Now one might think I'm off my rocker, but I honestly felt so pumped and emotional as I squeezed myself into a position where I could see the runners crossing the finish line. There were people of all kinds; young, old, heavy, thin, some looking exhausted, others looking like they had just finished a leisurely jaunt. There was a woman pushing a wheelchair-bound youth, and an elderly man who exclaimed with raised, shaking fists of triumph "I DID IT!"(this man made excellent time!). You could see many get that extra burst of energy as they saw their goal in sight. I felt tears stinging my eyes as I shared these people's moments of triumph.

Kevin had a goal to make the run in 2hrs. As the clock ticked away, nearer and nearer to the 2hr mark, I felt that adrenalin rush increase. I couldn't turn away from the race as I didn't want to risk missing him. Silly me forgot my camera *boo*. Kev flew through that finish line in just under 2hrs, he made his goal! We could see at that very moment as he crossed the line he was spent. But he did it, and he did it perfectly! Kevin inspired Michelle and I to set a goal to train for a run once she recovers from her surgery : )

Kevin spoke of how he cramped up during his race and really started to struggle around the 17km mark, but he pressed on. I got to thinking this afternoon how Michelle is already running a marathon. Her marathon is of an undetermined distance. Lucky for us she too continues to press on, taking all those hills and keeping her chin up when she hits road blocks. With all of our love and support, and her fantastic team of doctors, she will reach that finish line. This will be a happy day!

Congratulations Kevin on your terrific run and your amazing gift!

Love
Tracey

Oops...

So my original plan with selling t-shirts on the blog flopped. I have adjusted the prices so that we don't lose money. Sorry!
We got some awesome black fitted shirts printed up for the ladies. They are hot off the press today and I just love them!
tracey


edited to add: we have also switched post offices. Please email for new address.

Quick Note

Michelle is back in town after a nice visit with her brother and his family. She came home to her mom's husband and her step-sister! How lovely to get to see so much family this past week : ).
Michelle continues to do what she does: seemingly managing so well despite everything. I'm looking forward to catching up with her when she's rested again. Hope to share more soon.
We're having some great new shirts printed for the ladies; black, fitted, with a white logo. Will post a pic and details when they're finished.
Tracey

Back To The T-Shirts

So I've been pondering this for months, whether to go forward with selling our awesome Way To Live t-shirts here on the blog. This is what I've come up with:

unisex white with black logo: $20 plus shipping
girls black with white logo: $30 plus shipping

Payment would be accepted by credit card or cheque.

If anyone is interested in shirts, please let me know either in the comment section or at my blog email way-to-live@hotmail.com.

And just for fun(?) here is a poorly taken photo of moi sporting my favorite shirt ever! You may notice a few spaghetti stains, or that the camera adds at least 10lbs, but try to focus on the great logo designed by one of our fantastic team members!



Thanks for reading : )
tracey

Oh and just a reminder! We didn't go to some budget printer. The logo is supposed to be to the right, to represent where your liver is! Pretty witty of us hey ; )

Resilience

A couple of days in bed and Michelle's on the move again! She is moving slower though, and I can see she is uncomfortable. She is hoping to make it out of town for her sweet Nephew's birthday this weekend. Praying for safe travels and some reduction in the pain.

Tracey

"How Would You Rate Your Pain On A Scale..."

"How would you rate your pain on a scale of 0-10; Ten being the worst pain you've ever felt, and zero being no pain". Have you ever been asked this when you're seeing a doctor/nurse? I hate being asked this question. What if I give the wrong number and my pain is assessed inaccurately? Luckily this question is only part of a pain assessment. Michelle has so much pain, yet objectively one might not see that right away. I haven't asked her what her "number" is, probably since the appendicitis scare two winters ago. I know her pain is bad, because she tells me, and because I have seen her wince and catch her breath. I saw Michelle this weekend after a few days apart. She was so thin despite an 8+lbs spleen, her voice soft, her head aching. Today she spent a lot of time in bed feeling very unwell, and I could feel her spirit was being tested.
Please miracle, come quickly.

Tracey

And So They Wait...

Michelle had her 3 month check-in with the transplant clinic this afternoon. The summary of the appointment is...continue to wait. As mentioned before, organ transplants are down this year. The live donor transplant remains an option for the future, but the doctors feel the best choice right now is to continue to hold out for that whole liver.

Michelle's liver function continues to decline. A major blood vessel at the liver is working less efficiently than previously, and her spleen continues to have reduced blood flow resulting in subsequent pain.

Prayers are needed for this family to have the physical and emotional strength to get through this long wait.

Thank you to all who continue to keep Michelle and her family in your thoughts. The Ways are so grateful to you all for keeping them in your hearts.

Tracey

So What Is A Bean Count Anyway???

You may have seen both Michelle and I refer to a "bean count". This is Michelle's way of describing how much energy she has. It is basically a scale of: none/few-------------full can of beans! I came across an article during my own blog perusing(have I mentioned I am a blog-reading addict?). I thought it was such a good analogy of Michelle's "beans". Please take a look if you're so inclined, it's a great read : )
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And Michelle's mama is coming out tomorrow! Michelle is sooo excited, she would have a marching band and confetti at the airport if she could! Safe travels J, see you soon!

Tracey

A Fine Balance Between Hospital and Home

3 days. The size of a twoonie. Mind bending pain. What is this?? Scared to call. Should find out. What if the aneurysm in my spleen has burst? What if it’s nothing? I’ll wait a bit longer. Take a walk with my son. It’s not going away. I’m at the bank. Got to pay the nanny today. Can’t see the buttons through the pain. Just keep talking to my friend. That will make it stop. Okay. It’s time to call. If I call while I’m walking to the shoe store the news can’t be that bad. I come to these absurd conclusions on a regular basis. Dr. E is there and will take my call immediately. A rarity in itself. I’m standing between the infant and toddler shoe aisles and he tells me the pain is almost certainly related to the fact that my spleen has gotten too big to receive adequate blood supply. It has likely started to suffocate and die. The pain’s location tells him that it is likely the first spot. He tells me the pain can only be controlled in the hospital through IV analgesics. He will get me a bed today but I will likely be there until the transplant surgery. Well, we all know how I feel about long stays in the hospital!! There will be no caging of this butterfly today. He says I can stay home as long as I don’t develop fever.

It’s been a week since then and so far so good. I have befriended that hot spot just beneath my rib cage. It represents the fire of my will. So far I have not lost my mind. It is truly amazing what the body can become acclimatized to. I am so grateful for all those books I read in childhood of those ancient crazy Tibetans and great spiritual leaders who subjected themselves to physical torture to learn that there is something prior to pain. There is always inherent brightness, light and love within. We just have to tap into it instead of the pain. On the days I can’t find the brightness I lay in bed, whimper to my mom on the phone or take a dreaded pain pill. Those little buggers make me so itchy and sleepless they are almost worse than the pain. And Dr. E was right- they don’t take the pain away anyway.

This same week I came home to an open letter on my desk. It was from BC Transplant and read a little something like this, “Your live donor has been approved. Your surgery will be scheduled for September 2009. Please complete and sign the enclosed consent form”. Gulp. My blood turned to ice and then fire. Wow. It’s official. I knew Miss M must have received a similar letter. How was she going to feel? There is something so powerful in seeing the words in black and white with letterhead. This is REAL. It took me 3 days to call her. I want her to know again that I am not entitled to this gift of life. It is her healthy body that she is choosing to lend to me. She doesn’t give me the chance. She says she wants me to know she’s gotten a letter (she doesn’t know I’ve received the same one). She says she wants to post it to the blog. She’s so excited. She says that now we will really be sisters. It’s time to shop for those matching jammies.

I don’t know why I’ve been given these peculiar set of life circumstances but they have shown me how truly wonderful and generous people’s hearts are. In these times of global and economic crises, people have opened their hearts and wallets and bodies to make my life possible. I am so humbled to have such beautiful family and friends.

To my dear Miss Tracey; you are a truly comforting shoulder, a valued confidante. Thank you for listening to me always and for your honesty. Thank you for this blog. Thank you for devoting so much of your valuable time to me and to my son and for all the fundraising efforts. I truly couldn’t go through this without you.

Thank you to all the members of the Way to Live committee. That you found my cause worthy of all those hours of your time and effort is truly heartfelt.

Thank you to my family for staying on this roller coaster ride with me for all these years. I know it hasn’t always been easy. I promise to get off the ride and play mini golf (a game that’s much more fun).

To my dear California brothers and sisters. Your long distance love and fundraising for me after all these years we’ve been apart is a gesture of love that will last a life time.

To my friends from work for sponsoring our family to make our Christmas and the mortgage payment possible. When there are so many needy families, thank you for shining your love and donations on us.

To my husband, who manages to stand by me through every unpleasant bodily function and tries to see me as his beautiful blushing bride anyway.

And, to my son, who is always happy to see me and showers me with love and smiles every day. You will never know how well you make me feel.

Thank you to my friends that have flown to see me once, twice and even 3 times. Your visits, massages, adjustments, walks and talks add years to my life and soul.

Thank you to my husband’s family who have wrapped their arms around us and supported us through these rapids.

And to Miss M. Words won’t do it justice. Nothing can. I’ve sent you something in the mail. It was all I could think of to let you know how you make me feel. I love you. We were sisters from day 1.

Thank you to all those I haven’t names who keep our family in their thoughts and prayers and to those who have seen fit to donate funds to support us through this struggle. I blow you kisses, send you hugs and shower you with flowers of your favourite color. Thank you for not letting me dance alone. Thank you for making this sometimes cruel life seem so much kinder. xox. Good night.

Michelle

PS
I will have an ultrasound on Wednesday of this week and we will get the lay of the land after that. In the meantime I picture my spleen receiving adequate supplies of whatever it needs and living strong. We can’t afford to lose any more organs in there! My next assessment at the transplant clinic is June 8th. My mama is flying in from California this Thursday so she will be there for the big day. I called and told her I was done being a big girl for awhile. Sometimes a girl just needs her mama. She was just waiting for me to say the words and booked a flight the same day. Now. That’s love.

Still Waiting

Michelle's pain is quite persistent, and (the rare times she has taken it) the pain medication seems to be causing some undesirable side effects. What is taking so long??? My sweet friend has days where she feels so awful and "toxic" that she describes feeling like she has turpentine coursing through her veins. I can't even imagine...

Thank you to all who supported the garage sale. We are hoping to have another pub night this summer, will post details when confirmed.

Praying for you always chickadee!

Tracey

A Shout Out

Our new feature song is in honor of T's kids. You are all sweet to be thinking about Tater Tot's Mama : )

Tracey

An Itch That Can't Be Scratched

Just popping in to give everyone an update. Michelle had one really great day this week, but things have gone downhill since. She is plagued with terrible pain that her specialist suspects is related to inadequate blood flow to the spleen. Not good. She is trying to manage the pain and nausea at home. Michelle took one of her pain pills today so that she could take little man to the local fair. A side effect of the pain med is itching, and oddly enough she often gets an itchy nose. She wiggled and rubbed her nose to try to find some relief, and always felt moments away from vomiting. I have stayed home for far less, she is such a trooper. She really did have a great time at the fair though. Little Man loved the rides!

Some members of our committee are throwing a garage sale fundraiser this weekend in Vancouver. There will be hot dogs for sale, and Michelle may make an appearance! Anyone who would like more info, please contact me at way-to-live@hotmail.com


Tracey

The Good And The...Not So Good

Michelle is very blessed to have her dear friend Lady R from California visiting for the next week. In less than 24 hours she received a professional adjustment and a massage! How great is that!
Unfortunately Michelle had a rough night last night. Her pain was so bad she ended up taking a pain pill, something she tries her hardest to avoid. The pill took the edge off the pain, but lead to increased itching : (. So the poor woman got very little sleep last night.
Wishing you an excellent visit with Lady R, and some peaceful sleep tonight.

Tracey

An Open Letter

Dearest Michelle,
I know you heart aches often with the loss of your father. Please believe that you gave so much to him in his final days and always. You may feel in hindsight that you could have offered him more in terms of helping him deal with his transition from health to peace, but in reality you were in the role of daughter, and all he really needed at that time was love and presence. Your love was as unconditional as ever for you father. Just as spring brings new growth, and fall brings new color and dancing leaves, you father will always be with you.
The word amazing can never be used too often in your honor. You bring light, laughter, and a feeling of acceptance to those around you. I know of no others who have brought complete strangers to tears and full disclosure, or with a simple letter have had thieves make a full return of stolen goods. I encourage you to continue dancing with others. You have brought an amazing little boy into this world who is going to do great things with his life. You have a strong circle of family and friends who cherish you. Please be assured that any wounds will be shallow and heal quickly.
Also know that if this makes no sense it’s because I’m supervising a 2yr old out of the corner of my eye : P
Love
Tracey

Written A Few Days Ago...

I lost my biological father to brain cancer on January 14th, 2007. January 14th just happens to be Miss M’s birthday. I have looked at his picture for a long time tonight. I just needed to see his face, remember his soft skin covered in a layer of fine fur. He was a snugly bear and I often nuzzled in to his big broad arms. I miss his comfort and his life.
My dad was a writer, an artist, a carpenter, a great thinker and wonderful confidante. I didn’t really know him until I was 21. Our strongest bond was friendship. Our minds, made of the same blood were of kindred spirit. But, he called me Kidlet. At the core of everything, I was his baby girl.
We often met downtown to enjoy the change in seasons or catch a movie together if it was raining. We always talked for hours. He wanted to make the world a more honest place. He championed the underdog and made them realize they could actually conquer themselves and the world. He could never do this for himself. He was an unpredictable rogue who often misbehaved I miss him every day.
He was sick for 1 year before passing away. During that time I became his manager of sorts and helped him keep his life together as he literally lost his mind. I was pregnant at the time. He wanted me to help him deal with the diagnosis of “terminal” because I had once been faced with the same life sentence. I couldn’t help him or “go there” while there was new life growing inside of me. I couldn’t really get down to the emotions and feel them with him. I was there for him on a practical level and spent many days and hours with him but I never really let him confess his fear, the pain and outrage, the injustice and frustration. I am so sorry. I know now how much I could have helped.
I have been dancing with illness for 13 years now. Sometimes I flit across the floor and sometimes my feet are swollen out of my shoes. Being and overcoming being sick has pushed me to make the rest of my life mean something to me. I have made choices along the way that strengthen my bond to people and this earth. Where I once danced alone I now have a husband and my baby boy. I have the most amazing friends, a career I truly love and am proud of and a piece of land with a vegetable garden! All my dreams have come true. I just hope that my choices will not cost the ones I love too much. When I let myself, I wonder, “Was it selfish to dance with others when it would have hurt less to dance alone?”
I am frustrated by the squeeze of illness on my abilities. I want to be free and strong. I am fearful tonight. There are so many blind corners ahead of me. I am a passenger in a speeding car without a driver. The blind faith that has led my life so far is the only thing I can cling to now. It is more of a refusal to participate in the undesirable than true courage.
I pray for brightness and life to surround my loved ones. I pray we take the corners with ease and that the road becomes less treacherous. I pray that I never stop dancing. I pray for healing of wounds my illness has caused. May my love continue to be felt.

Michelle

And The Results Are In....

Miss M. has been approved as a live-donor for Michelle!!! What does this mean? Well, if Michelle doesn't get a whole liver by a specific date, then they will go ahead with the live-donor surgery. This surgery is not booked yet, but they are aiming for the end of august/early september. This is great, because it is an opportunity for the Ways to see a light at the end of this tunnel.

Michelle is having a string of rough days again: nausea, pain, lethargy. Yet through it all she still manages to be the most amazing mother. I am in awe of all she does, and how she carries herself. She may not have a lot of energy, but she uses what she has so efficiently.

In planning our last pub night, I had a conversation with the project manager of the Organ Donation and Transplant Association of Canada. She informed me that a huge number of organ donations are lost because people do not tell their loved ones what their wishes are. Registering as a donor varies depending on where you live.
For more information in Canada, please check out: www.organdonations.ca
And in the United States, please check out:
http://organdonor.gov/about.htm (not sure if there is a better site for US, if you know, please post in comments).

Good night!
Tracey

Happy Anniversary!

Today is Jarvie and Michelle's fourth wedding anniversary!
I remember this day four years ago. We had all driven up to lovely Harrison. It was an outdoor wedding, and it was raining. But wouldn't you know, just before the beautiful bride was ready to walk down the aisle with her two sweet dads, the showers lifted and the sun came out. It was a lovely ceremony; Michelle beaming ear to ear, as bright as the sun was that afternoon. Happy anniversary you guys! May there always be sunshine in your life : )

Love
Tracey

An Answer To Prayers!

Oh Boy, I love good news! This actually caused me to tear up:

I phoned Michelle the evening of her surgery to see how things went. Michelle answered the phone, and sounded completely normal, better than normal. WHAT??? Usually she's all croaky and groggy after banding surgery. She proceeded to inform me, that against all odds and logic, the surgeon went in to perform, and found nothing worth banding!!! It was less than a month ago that Michelle had a CT scan that showed numerous and large concerning varices. She was told to be ready for this banding. The surgeon admitted fears that he was running out of room, that scar tissue might be too great, that she could soon need tubing placed in her throat to keep it open. Everyone is completely shocked that the varices have shrunk. Michelle has had banding every 3 months for the past 6 yrs or so, this would be the first time she has come out with nothing! Such a blessing : ). This woman is a walking miracle! Just in case anyone is wondering, the transplant is still on. Michelle continues to have portal hypertension due to her liver failure. And after a run of "good" days, she is back to having bad pain again.

Please continue to lift Michelle and her family in love and prayers.

Thanks
Tracey

Off To The OR

A quick note before I go away for the weekend. My big brother is getting married!

Michelle is off to surgery for the variceal banding today. Please lift her up in prayer, as it turns out a recent CT scanned showed there are many varices, some very large. I will try to get online tonight and give you all an update, as I will for sure be calling later today to check on how things went.

I had an image the other day that I shared with Michelle: her lounging in her backyard this summer, post-op with a new liver, sipping ginger ale with a tiny pink umbrella in it, and watching her son on the swings : )

Tracey

What I've Been Waiting To Share!

I can now fill you all in on a fundraiser a dear friend is doing on behalf of The Way family! Our amazing friend Kevin is taking on the challenge of a 1/2 marathon to raise funds to help offset the family's medical expenses! Please check out Kevin's blog to see how his journey unfolds, and maybe make a donation:

http://www.waytorun.blogspot.com

This is so terrific Kevin! I wish you well with your training and on the big day!

Tracey

A Much Needed Getaway (written yesterday)

The phone rings again. My son looks at me, “hello?” he reminds me. Oh yea, the phone is ringing. Answer it. I know there is someone I would love to talk to on the other end. I hope they will tell me their news first. I’m going to call Miss M when I get off the phone. I’m filled with the craving of a get away to my happy place, Vancouver Island. I need to see Miss M. It can’t wait a day longer.

I plan a trip. Now I’ve got to find a convincing argument for my husband who hates to let me venture out alone. I tell him I’m all better now. Got my wits about me. I’m a caged butterfly here. Could drive if he let me. Whoops left the water on in the bath and it almost overflowed. Now the phone’s outside in the rain. Oh, was I cooking again? Hmph. Well, no biggie, just a case of bad luck. I’m sure my journey will be uneventful. Silently I write my destination on my hand and tell myself I will pick a seat on the ferry and stay there. How much trouble can I get into that way? I feel like Curious George telling myself not to be so curious.

I made it! The unfamiliar feeling of autonomy settles in as I sit in my corner of the ship. No one knows me here. No one will ask me how I’m feeling. No one cares. Around me sits a couple of teenagers with gum and one of their dad’s who over imbibed at a family wedding. The 3 of them talk like buddies. They laugh and chide him for getting so carried away. He tells them to go for a walk but not to do anything stupid. They wander off. There is a genuine appreciation of each other. I imagine my life with my toddler as a teen. I can see us lounging and laughing too. How the dynamic changes as life goes on!

The ferry docks and Miss M is waiting there to pick me up. Her long blonde hair and her warm arms wrap themselves around me. We bustle to her car and begin the 72 hours of non-stop chatting. Every story is ½ finished because the next one can’t wait. We are hungry for the confidence of a close friend, eager to close the gap of time between us and sort through our next herculean effort... live liver transplant surgery! We got down to the nitty gritty, the dollars and cents, tits on the table (as my mom would say). We are approaching this with resolve, strength and a keen eye on the big picture. Life after transplant!!! There is much life left to be shared. It took me until today to cry and then I couldn’t stop.

After the two days of assessment at the transplant centre Miss M and I wrote back and forth to each other. There were some deeply personal, very real questions we had to answer before moving forward. I needed to feel okay with receiving her gift of life and she needed to feel okay with giving it, even if her efforts fail in one way or another. I have asked her to let me share a portion of one of her emails because it shows why she is doing this. I was understandably moved and humbled by her message.

So, firstly, don't feel terrible, as I certainly don't think it's too much. What I have gone through to date is so insignificant in comparison to what you have had to endure. It is not too much.



As for the pain, scar, etc...really, I would rather have a scar and a best friend than perfect skin and no friend. Yes, it is going to hurt; yes, it will leave a scar; yes, recovery is going to suck. Is all that more important than more time having you as my best friend? NO. Is that all more important than you having a chance to raise your beautiful son? NO.



So, please know that if I think the sacrifice is too great, if I can't bear the scar, the pain, the recovery, I will put a halt to the whole thing; but, while I am motivated by my love for you and your baby and my selfish need to keep my best ever friend alive, I doubt that will happen!



So, it is not costing me too much. It's a few weeks of my life, for years of yours. It's a scar on my body to save yours. Please don't worry about what I am doing, worry about staying as healthy as you can until you get your new liver (or piece of mine) and then focus on recovery. I love you and want you to be around for years to come, healthy and happy.



So, please, focus on what is important for now and we will hope that a cadaver liver comes through before any of this even comes to fruition, but if it does, we will have to pick out our matching jammies and enjoy a new lease on life!



Love you!



M

Miss M She tells me she is uncomfortable with the title she keeps hearing, “hero”. She’s not saving my life in an effort to be heroic. I’m sorry Miss M, you are a hero. But, I promise never to call you one again because your friendship means more to me then your sacrifice. I know we both want it that way.

On other fronts, my mama’s off to Fiji for a month and my step-dad returns their next week. There’s a tinge of fear as they sail off to seas unknown but I have an inkling that I’m going to be okay for awhile longer here. My mom has been there for me through all my health ups and downs over the last 13 years. She has put mine before her own needs time and time again. It is a darkness in my heart and a guilty spot in my soul. I need her to be free as I want to be. I know she’ll be back. May your journey be safe, your retreat restorative and the island air healing. I love you dear mama. I will miss your confidence, your closeness and your protection but I am relieved and happy your are finally making this journey. We will be fine here! Don’t worry about us- please!


Michelle

Postponed

So Michelle went to the hospital today only to find they were overbooked, so her banding has been rescheduled for next friday. Such a bummer. She feels like garbage if she doesn't eat, and here she had fasted until this afternoon for not! But apparently the Ways still felt they should get some hospital time in, so off they went to the clinic for Jarvie. Actually, Jarvie had hurt his foot quite badly the other night in his rush to watch the Canucks, and now with Michelle's surgery canceled the Ways had some extra time to get him looked at. The clinic doc thought it was broken, thus directed them to the local ER. X-rays were done, and then they were sent home until the radiologist could read them next week. You know the medical system is in crisis when...

Michelle was feeling strong enough today, so she has ventured off to the island for 2 days to see her dear friend Miss M. In the event that they end up going the live-donor route, these two have some important stuff to go over, as this surgery is a big deal. The fresh air out there is also a bonus! Safe travels chickadee : )

Tracey

Surgery

I have never before known someone personally who had such a large, diverse, and fantastic group of friends! This is the kind of stuff you see on Oprah! All of you are just so open-arms, generous, caring, and thoughtful in every thing you do. Each of you are blessings.

Why am I glowing tonight? Another dear friend is taking on a challenge to help support the Ways! I am so excited to share what this friend will be doing, but for now it's under wraps. I will make a post about it when I'm given the green light : ).

Michelle is going for banding surgery tomorrow. With liver disease comes scary side effects such as esophageal varices, which are little bulging veins in the esophagus(food pipe) with the potential to burst. Michelle goes for surgery every 3 months to get new varices tied off(or banded) to reduce the risk of a bleed out. Unfortunately in the past she has had numerous varices banded in the same spot which has lead to some scar tissue that can make swallowing difficult for her. I have had tears sting my eyes when I've witnessed her in pain and gagging because it can be hard to get food past this scar tissue. Please pray that surgery will go well, that any new varices will be few or none, and that there will not be any near the already scarred up part of her esophagus.

Thank You,
Tracey

Good News!

Michelle is holding her own and little bit more!. She saw her specialist yesterday for some test results, and it seems she has actually had some improvement in her blood work and has gained a little weight back! It is such a blessing to get some good news while she waits what probably feels like the longest wait ever.
I chauffeured her yesterday so she could pick up some necessities for her son. We were at the mall when she startled and asked me what a noise was. She thought it might be her pager, but it was just the buzzes and bustle of the mall. Then today at her house our kids were playing when I heard a noise and audibly caught my breath. It was a pager, but only a toy from a doctor kit we had bought Tater Tot for Christmas! Statistically it is getting close to the time when an organ could become available, are we subconsciously on edge? Michelle is handling this stage of her life with such patience and grace. I am so excited for the days to come when she feels well again. Soon chickadee!
Thank you all for your ongoing love and support : )
Tracey

Poker Night Canceled

Due to our biggest number of expected attendees having a conflicting event, we are regretfully canceling our poker night. Any tickets already purchased will be refunded in full. Stay tuned as we will try to reschedule.
Thanks!
Tracey

An Amazing Woman Deserves An Amazing Friend!

When's the surgery? Michelle must get asked this a lot, I know I do on her behalf! Michelle is waiting for a whole cadaver liver, but could also end up with a live donor, partial liver. The partial liver transplant will only occur if the wait for a cadaver is too long and they don't think Michelle can hold out for it. Michelle has an amazing friend who offered her a segment of her liver almost immediately upon learning Michelle's need. The assessment process is quite involved, and the surgery itself requires a huge commitment and careful consideration from both the donor and the recipient, as well as the families on both sides. Miss M just recently completed her final 2 days of testing and they are now waiting for the results to see whether she can indeed be a donor if needed. If they end up booking the surgery it will not be until the mid to late summer months. In the meantime, prayers are for a cadaver liver as this is the best, most ease-full process for all involved. Miss M, you have a huge heart and Michelle is blessed beyond words to have such a dear friend.
Tracey

Update from Michelle : )

Okay here's a good news story....

After being told that I was now in the 3 to 6 months to live category a few weeks ago, my step dad came to visit me. He had just spent 2 years living in Fiji on a remote island.... in a tent!!! He is about 6 foot 3 and weighed in at 159lbs. I had peeled myself out of bed to say good-bye to Miss J and welcome my dad in. I swooped in for a hug but landed on skin and bone. The female instinct clicked in and I was overcome by the desire to nourish and fatten him up.

I spent the first 3 days of his visit unable to get out of bed except to go to the doctor or throw up. I had not seen my dad in 2 years. I was absolutely desperate to feel better. I pleaded with the couch, the floor, god, my nanny and the cat. What can I do to get over this.

I started going out anyway. My dad wheeled me in a wheelchair. I clutched my stomach to quiet the pain and breathed heavily to overcome the fatigue. He asked me if I was actually feeling better or just faking it. I confessed that I was faking it. Now the blood was moving again and I could feel life force re-entering my body. I felt like a plant longing for water that was now soaking in the rain.

It was the little things; bagging my medication into daily doses, helping me with my bags, driving me to drop off my various 'samples'at the lab, watching my silly reality TV, sipping coffee, and eating banana milkshakes daily. He had many missions to buy things he needs for life on the island. I co-piloted, sometimes well and sometimes not very well at all. Meanwhile we talked about the past, present and future. He did what I cannot and googled 'liver transplant'. He shared what I needed to know and, thankfully, kept the rest to himself. He fixed a little teapot, glued together an old lamp, fixed that silly bar that hung from the stroller and all the other things that dad`s just seem to know how to do. He watched out for me and for Nate and I felt safe. What is it about a good dad that just makes everything feel like it`s going to be okay? I really needed that feeling. It had been too long.

I don`t know if it was my dad, the sunshine, a few new meds, the spring flowers, or just pure luck, but I have not felt this good in a year. If I didn`t know what was going on in the inside I would probably join the lacrosse team. I write with trepidation because I don`t want to jinx myself but I just want to sing from the mountain top. I can`t stop myself. I feel very alive, very happy and very `beanful`. There is still constant pain, bloating, itching, nausea and the host of other ailments but there is a spring in my step and a true smile on my face. And... for the record my dad and I fattened up quite nicely in the 2 weeks he was here. He left on Monday and I cried almost the entire day. I thought everything would crash after he left but I have managed to hang on to the feeling of happiness and wellness. Thank you for bringing me so much love, so much peace and for being such great company. I love you always.

Michelle

Logo

Okay, I'm not feeling pretty enough today to post a picture of myself wearing our t-shirt. I will get one up soon. To pique your interest until then, please see our committee's logo to the right. This is the picture on the shirt. Once I get an actual picture up, you will notice that the logo is not centered. NO, we didn't get them printed at budget-shirts-r-us! This was a strategic plan. If you have any anatomy experience, you will know that the liver is situated in the upper right quadrant of the abdomen. Since Michelle needs a new liver, we thought this shirt might stimulate some conversation, which in turn could create awareness. The shirts are being sold locally for $20. I am heading to the post office this week to figure out shipping costs, as we would like to make them available to everyone who would like to purchase one. Stay tuned : ).

Michelle's step dad is leaving tomorrow. She is so sad and will miss him dearly. He has brought so much calm to the home during his visit. I had the pleasure of his company also, he is a very dear man. Safe travels B *wave*.

And on a happy note, Michelle's mom may be headed back for a visit this month : ).
The magic of spring and all this sunshine have me feeling that something big is coming our way!
Tracey

There is a point to the bird story!

Today I fought a crow for a tire pump. The little buggar swooped into my stroller basket, and snatched it. Now anyone who has a child knows you can't leave yours at one end of the park while you ambush a thieving bird at the other end. So with my child under my arm I ran like a crazy woman to rescue what was mine. Why did I care so much? Because my husband had already lectured me on losing it, and would never believe me if I told him a crow stole it. Since when did crows ride little bikes anyways?

Michelle has hit a new milestone with her liver disease. Do we still call it a milestone if it's not positive??? We've all had the itchies. Whether it was chicken pox, eczema, a mosquito bite, etc. Well Michelle has a new symptom called pruritis. This can cause intense itchiness, and she has been told that some patients even feel like their internal organs are itching. Unfortunately because most meds are processed through the liver, it can be tricky to find something to manage this issue. At this point she is doing oatmeal baths to try and find some relief, and hopefully her specialist will have some more effective suggestions when she talks to him next. Her pain also remains uncontrolled due to the medications having adverse effects on her poor body. So although she has had more energy the last few days, Michelle continues to struggle with the wrath of a failing liver.

So while I tred through my day, feeling like life gives me too many hurdles(even the birds are after me), I pause and remember to be thankful. Michelle is a true inspiration.
Tracey

Poker and T-shirts

Ticket sales are on for our upcoming Poker Night! There are only 80 tickets for grabs, so act fast if you want a seat!

Date: April 25, 2009
Time: Come on out for 6pm, game to start at 6:30pm
Place: Fraser Arms Pub, Vancouver
Cost: $75 per ticket
What you get: your original buy-in and a seat at the table. There will be five prizes for the top five winners. Prize value dependent on ticket sales.
Contact: feel free to contact any of the committee members you may know for tickets, or email me at way-to-live@hotmail.com and we can get you set up.


*****Coming Soon On-Line*****
Our committee made some awesome shirts, with the final design created by Adele A. We sold a bunch at our Silent Auction Event, and plan to have them available for purchase at the Poker Night. I am pleased to announce that we should have them available for purchase on-line very soon! Unfortunately it will cost a bit more for shipping and handling, but they really are a great design, and for a fantastic cause : ). We have some stock now, but I need to figure out shipping costs, and I would like to get a picture up for all to see. Mine's actually in the wash AGAIN, cause I love to wear it! But I will get a picture up soon, promise ; )


Thank you everyone for your ongoing support and sweet words of encouragement. Your kindness is so appreciated by the Ways and our Way To Live committee.
Tracey

From Michelle!

Well, here I am at 11:15pm. I’m well enough again to have my day night reversal. I took a hot bath and spent 20 minutes next to my snoring husband before heading downstairs to attempt to write.


I have not read the blog in many days. I have wanted to write to you. But my fingers would not coordinate against the keys. I wanted to weep into your fingers and thank you for reading, for caring, for praying, for donating, for your words, your gise, your true intent, your sweetness to me, your care of my husband and your tenderness towards my son.


I don’t have any tales of triumph or heroism. In fact, I have needed to lean on my solids to be reminded that the pain will ease, my stomach will let me eat, I will walk with my son, be able to function again. Each fall is coming faster than the last and I lose hope that I can be a mother to my baby, a wife to my husband and a friend, employee, all the titles I hold so dear. I hate to be unable to get out of bed. I toss myself around in it and claw at the walls.


My son has bonded with the nanny now. They have their own beat, their own dance. I am happy but it hurts. He doesn’t cry for me anymore when I am home. He lets her bathe him, feed him and care for him in every way that I do. I told him mommy is sick again. He offered me a "bamp-aid". He got me an ace bandage and wrapped it around me. My heart aches. I have to let it go. I can’t hold onto the ideal in my head. When I relax I see that he is in a house that is constantly full of love. Whether it’s the nanny, my dear friend from California, my big brother in from Kelowna, my step-dad in from Fiji or my faithful, steady mama from California and of course, me in whatever shape and daddy who can do no wrong in his eyes. They got up early this morning and watched Elmo before hauling out the Rock Band gear and jamming. I grinned in my half sleep this morning. His story will not be typical. Mine isn’t either. I pray that my love is soaked into him. That he always feels it and knows it even when I cannot be there to walk, play, paint, sing and dance with him. I am proud of his strength. Every day I hear his joy.


I have had many talks with the transplant clinic and my specialist over the last few days. It seems I have “hit the next level” of liver failure. In other words, I can expect to basically always feel quite unwell and often unable to function. Of course, I will be pedal to the medal even at this level. I will not lie down and wait for this happen to me. They are talking about me at their weekly meeting. I am moving up the list on priority. There are 3 of us at the top each sicker then the next on any given day. When the next liver comes up it will go to whoever is sickest on that day. Transplants are way down this year for some reason.


My live liver donor has made many pleas that they fast track her assessment. She doesn’t want to run out of time. She completes her testing in early April. It looks like, if all goes well and there is no cadaver liver by then we may be side by side on the operating table sometime in May. This is by no means certain. She still has many tests to go through. She called me breathless with the news. She heard it first. I asked her to tell me if she’s questioning her decision in any way. She said she was excited. She wants to save my life. She will be cut in the shape of a Mercedes emblem covering almost her entire torso. She doesn’t care. She is absolutely accepting every aspect of the surgery and aftermath. All she needs is to make sure her animals are fed while she is unable to care for them. My grandfather has agreed to help with the costs of supporting my donor and friend while she recovers. Thank you grandpa. Thank you blessed friend. I pray that I will get the liver of a soul who has already lost their life so I don’t have to scar you.


I’ve asked my doctors and the clinic, what can I do to prolong my life, avoid further progression of the process? They said, “don’t start playing football or go bungee jumping. Nothing else I can do”. Check. Just in case you were going to invite me- I can’t make it. But, ask me again with my shiny new liver. I’ll be there with bells on and a bottle of wine! : )


Much love and good night friends,

Michelle