Sunday, March 29, 2009

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

Friday, March 27, 2009

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

Thursday, March 26, 2009

Hurray!

Michelle has rounded another bend! After 2 terrible days of being bedridden and unable to eat, Michelle is once again on the move! She first ventured out yesterday to Walmart with her step dad. They were out of the cool scooters, so she was stuck with a wheel chair; but hey it's Walmart, always great : ). And today she had the energy to take Tater tot out for a walk. When she's having an "unwell" stint, it's hard for her to imagine that she will ever have a day again where she can be active and able to eat. I've seen the cycle enough that I always try to reassure her. I can only hope that this continues to stay true.

And thank you to those who had to re-make your credit card payments for the silent auction, we really appreciate it : ). Our next event in the works is a poker night. Details to come soon.

Tracey

Tuesday, March 24, 2009

Struggling

I am struggling. What words are there that can sooth the deepest hurt of all? We never really know someone else's pain. We can imagine, we can try to understand, we can seek to empathize. But unless you're the author, the story is not yours, and we'll never "get it" 100%. I pray for the wisdom to do and say the right things. My heart is breaking for Michelle as she waits for her surgery. I know there will be a miracle here, and in this I find peace. I was on my knees today, praying with my little girl for auntie Michelle. I know not everyone shares the same beliefs, but I think we can all find the beauty in a 2yr old girl on her knees, just learning to talk, asking for "chelle" to receive a new liver and find healing. With tears now, I ask that everyone continue to keep Michelle in your thoughts.
Thank you sweet friends, old and new.
Tracey

Sunday, March 22, 2009

Success!

Our event last night turned out fantastic results, over $4000 was raised! Thank you to everyone who purchased tickets and t-shirts, made bids, entertained the raffle and 50/50 draw, and just plain showed up to offer your support! We even had a few kind strangers make donations : ). One young gentleman,unknown to any of us, came up and said to me "I feel like there is a good cause going on here and I'd like to make a donation". How sweet is that?!

It was great that Michelle made it out, I know it was a triumph for her. She did really well, with only one escape to my car where we reclined in the front seats and chatted quietly while we waited for her nausea to settle. She is so humbled by everyone's generosity, and struggles within herself to just accept that everyone loves her and WANTS to help. We all know she would do the same for us if the tables were turned.

Upon Michelle's last hospital visit there were some new and unsettling findings unturned in the testing she endured. There is now a blood clot near her spleen, and they have since discovered an aneurysm in the spleen as well. It seems no one is quite sure what approach to take with these new issues. The risks are not great; a loose clot could cause a stroke, a burst aneurysm could mean a bleed out. Michelle could really use some extra prayers on this one guys.

Step dad B is coming out this week, which is a really good thing! Michelle finds he is really helpful, and feels his presence is so calming. What a blessing!

Thank you all again : )

Tracey

Wednesday, March 18, 2009

What's Up

Update coming soon. Michelle has been busy with company, and I've been busy with the fundraiser. We catch up daily (who am I kidding, multiple times a day!), but I like to clarify what is okay to post; and we've both been too exhausted to get down to "business" over the past few days. She had a nice visit with her big brother this week, and has some exciting visitors heading her way in the near future! She's so excited to see J and her step dad : )
Michelle is a medical miracle of sorts. Her liver may be failing, and her white blood cells are low, but what she's got left of both is working overtime in an amazing way! Such a blessing!
Tracey

Friday, March 13, 2009

Upcoming Silent Auction

No new updates from Michelle. Every day is a new day, with old and new challenges. We're cheering for you chickadee!

We have some super exciting donations streaming in for our silent auction on March 21st! Designer purses, a private snowboarding lesson, Canuck's box seat tickets, a stay at a luxurious spa, a blue ray DVD player, a Club Penguin membership...the list goes on! We are so excited for this event : ). Hope to see many of you there!
Tracey

Wednesday, March 11, 2009

From Michelle!

Well I guess I’m still a brat and I’ve still got my sass. Hopefully I always will. I discharged myself from VGH last night and caught a cab home at 4 in the morning. I gave my mom quite a fright as rang the doorbell and banged on the front door. She knew I’d been trying to leave for the past 8 hours. She chuckled at my tenacity.

Well, in all fairness, I didn’t mean to end up in the hospital again. What had started out as a quick call to the transplant coordinator about fever and pain was turning into another admission to hospital. I was going to be admitted for 7 to 10 days and maybe until my transplant. At first I tried to be mature but I just couldn’t be away from my family again so soon. We had just recovered from the last round. After 4 meetings with the docs they let me sign a waiver and leave.

I knew I stood to be scolded but I couldn’t help smiling as I whizzed home in the black top cab. There was not a car in sight and I opened the window to let the freezing cold air of freedom hit me in the face.

I navigate these waters carefully knowing that VGH is the means to my ultimate salvation from this treachery. After a chest x-ray, ultrasound and another CT scan the news just keeps getting worse. The 2 major veins between the liver and the spleen are blocked, the blood is flowing abnormally throughout my body which is affecting my heart. I have almost no white blood cells left and there is blood pooling in my intestines causing severe pain and fever (the reason I went to the hospital in the first place). Oh yea, and I have diverticulitis from all the medications.

But… my liver just keeps going! It’s shrinking in size because of all the dead tissue but the liver function tests are NORMAL. The aftermath of it’s refusal to fail is overwhelming the rest of my organs and the rest of my internals. My liver knows it can’t stop now. We’re too close to the finish line. I elect my little champion liver to the hall of fame for bravery, sportsmanship and perseverance. What a trooper!!!! I will miss it’s courage but will happily surrender it to the text books and the labs that can’t wait to see what it’s made of.

What an interesting thing it is to be waiting for a liver transplant. My husband and I marvel at the amount of times we are asked, “When is your surgery?” Waiting for a transplant is unlike anything else I can think of. You depend on someone else's demise as your salvation. In my case, it must be someone young and healthy. So, in other words, I am waiting for a tragedy. And, thankfully tragedy is not scheduled. To pray for such a thing seems grotesquely inappropriate. But, death is inevitable. 140,000 people die of traumatic causes every day. I don’t know whether that’s in BC or Canada wide but either way that’s a lot of people. I can only hope that one of those people is a donor and one of those donors is a match for me. I pray that their passing is painless and that they are somehow ready to go. I will treasure the gift of their life forever. I will make the most of every day in honour of their life. I will tell my son about their sacrifice and what it meant for us. I will tell him about everything our friends and family have done to get us through this. I will work passionately at my job, I will exercise like I’ve never exercised before, I will enjoy sleeping again when everyone else is and I will savour every mouthful of food without pain. I will sing, go to school, dance and give back gratefully. I pray I am given the chance to make good on these promises. I pray I am given a chance to live.

If for some reason I can’t hold out for a cadaver liver, my dear friend (who was also my maid of honor in my wedding) has offered to be my live liver donor. This is a serious surgery for her and for me. The transplant surgeons don’t favour it because of my age. I would receive the top lobe of her liver which she would grow back. I would grow a liver to full size but would have only ½ of the blood vessels. This would mean a much longer recovery time and the liver would not last as long. I would require another transplant in approximately 10 years. My friend has not completed the assessment stage but so far she is a match. She has offered to drop everything and save my life. She will endure a lot of pain and have to take 3 months off work. And of course, there is always the risk of complication. The good news is, no one has ever died or become seriously ill as a result of being a live donor. When she heard about this option she immediately volunteered herself without hesitation. I can honestly say I would have done the same for her. We have envisioned sharing junk mags and wearing matching PJ’s while we discuss the meaning of life on pain meds in side by side beds. I can honestly say there would never be a way to truly repay such a gesture. I am truly blessed to have such true friends. Thank you Miss M. I love you.

My love and gratitude to all of you who pray, love, contribute, send cards or just think about us. Be safe and love life.

Michelle

Tuesday, March 10, 2009

The Waiting Game

Things are a bit tenuous as to what is going on, what can be done, etc. Michelle had a lot of testing last night, then begged her way into being discharged at 4am this morning, crazy girl! She is under strict orders to return to hospital if she spikes a fever. Her white blood cells are very low, therefore she is at high risk for developing infection. The transplant team and her liver specialist will all review her test results from this recent hospital visit and move forward from there. Oh how does she cope with all this waiting???
Michelle had a great idea to do a post regarding the transplant wait, live donor versus non-live donor, etc. I hope she feels well enough to do this soon, as she will explain it way better than I ever could!
Ticket sales for our event are taking off! We got our final 21 tickets from the venue today and I think they will go quickly! I'm really hoping this will be a super fun event to celebrate Michelle, and for the community to pull together to help one of our own. Everyone is so supportive of our group's efforts, and we are all so appreciative of that : )
Thank You All!
Tracey

Monday, March 9, 2009

Round Two

Seems Michelle didn't let on to me that her fever has actually been for 5 days! She was directed to go to hospital this morning, to try and figure out this pain and fever. She is still there this evening with no answers yet. She is trying to get herself home, but the staff have so far decided otherwise. She is doing okay, with her mama at her side.
Tracey

Sunday, March 8, 2009

Always In My Thoughts

The pain seems to have gotten more intense again, and Michelle developed a fever last night that has persisted through today. My stomach is in knots for her. Is this infection? Is it the natural course of liver disease?

Please know we are all sending positive, healing energy your way dear friend.
Love,
Tracey

Saturday, March 7, 2009

Quest For Sushi

A few good days, a few...less good days. Michelle had a couple of days of energy, only to be followed by days of increased pain and nausea. We had big plans today, well as much as two moms with no car can muster. Unfortunately she ended up having nausea, and pain that made her have to stop and focus her way through it. We went for a short walk with our kiddies. I offered to pull her home in the wagon, but she politely turned me down. There was no way we were going to make it for the sushi we were both craving. My dear husband came to our rescue and made an emergency avocado roll delivery(one of the few things Michelle's tummy can tolerate). My husband is a man who is not one to comment on the status of others often, but he said to me after we left today how tired he thought Michelle looked. I am sad to see her looking so thin and sallow(but still beautiful of course!). I truly am amazed by this woman, her strength and courage are such a blessing.
Tracey

Tuesday, March 3, 2009

A Note From Michelle!

It is so good to be home. It was quite a life changing experience. I left the hospital because they said they couldn’t fix me. I was just getting worse in there. I’m a zebra, a complicated puzzle, a case of unsolvable math. Just a few of the analogies I heard while lying near the bathroom with half a curtain in the palliative ward. The nurses lifted a patient who had been lying motionless for 3 days to his final resting place as the family wailed. I couldn’t hear their words as it was spoken in a foreign tongue but I was pierced by its honesty. This man would be forever missed. His loss would tear a hole through his family’s soul. They surrounded him. Demanded a high tech x-ray so they could confirm nothing was moving before they let him be. My heart ached for them. I never want my friends and family to feel that way. Ever.

I knew I had to leave too. Get out of dodge as they say. But I wasn’t going in a body lift the way the old man did. As my husband lifted me to standing and lowered me into the wheelchair he finagled for me- my specialist called, "Go immediately to the transplant clinic. They need to see you." You don’t say no to Dr. E.

This meant going and waiting in a giant waiting room full of liver hopefuls for 4 hours to see one of the doctors. My friend, and live liver donor walked through the door with a handful of tulips and mother in tow. They brought freshness, love and a French braid to the equation. They found laughter amongst the bloated bellies, snoring patients, hurried doctors and yes, even me- gray, skinny and lying limply over anything that would support my weight. They caressed me back to human and I was finally assessed. My fears were confirmed. I was bad, needed to get strong to even survive the surgery. It was time to fight again. This time it has come too close. I could smell the end. By my side through the hospital visit and every moment of the transplant ordeal was my dear friend H. She seems to absorb the pain and feel the fight right along with me. Some friends bring strength, some bring a shoulder to cry on and some make you feel stronger as they live it WITH you. She will take me when I shine and she’ll take me when I’m shredded to bits. There is never a demand to be anything but the way I am. Her courage, her love and her constant diligence is a gift to which I am forever grateful.

My friend walked me down to the street and my husband gathered me into the car. Another friend followed close behind with an avocado and the cell phone I had left behind.

On the way home, the magnitude of the struggle and going home to face the sweet innocence of my baby boy overwhelmed me and I was suddenly engulfed in a tidal wave of sobs. I couldn’t stop my lungs from heaving and the groans of agony from escaping my lips. I wretched as my husband drove with one steady hand on the wheel and the other one firmly holding my leg. Even then I marveled at his strength. It takes a very special kind of person to endure this and continue to BE THERE in such a physical and entire way. With his silence I calmed and the crying stopped.

All of a sudden the lights in my eyes went dim and I was rising above my body. I looked down at my hands and moved them so I would know they were really mine. I was able to tell Jarvie a few words. I had him stop the car. I dove out to the ground and crawled to the edge of the land before it landed in the river. I dug my hands into the dirt so that I would remain attached to the earth. I didn’t want to let go. He brought me home and fed me spoonfuls of peanut butter in the driveway, carried me upstairs and washed the hospital off my body.

My son came in and nervously opened drawers and got me into my pajamas. I was barely holding it together. My husband left to get some prescriptions filled. It happened again. We were alone. I couldn’t hang on and my vision was going while my body started to convulse. I called for the nanny who was standing right behind me. She called my dear friend and author of this blog who came over within minutes.

With the help of my husband making faces, my friend who took my pulse and then asked me meaningless questions and held my eye in her contact, and a call to the doctor I came out of it. I spent the next 2 days with moments of rising so I would fixate on an object that was moving to keep me down. With food, water and the warmth of my family around me I started to come around. Then... the stomach flu. Say no more. Now... 18lbs lighter I am bright, alive and ready to thrive. I have learned a valuable lesson. I will never again take for granted the beating of my heart, the thoughts in my head, the eyeballs that see, the nose that breaths in and out for me. The hands that move to make me know they are mine. The birthday parties, the dinners, the walks, the ducks, the things I laugh at, the friends that phone and those that don’t. Thanks for every word I can think or type. Thank you for every breath. Thank you for every day, for each moment. I am ready to stay positive, go forward and fight. FULL OF BEANS!

Thank you for all your support and love. I am made stronger by its force.

Me and my guy celebrated his real birthday with an outing that included the purchase of a brand new potty complete with toilet paper holder and a night of giggles, playing and silliness. Tonight seems to have mended our broken spirits. Thanks gramma and nanny for making it possible.

Love,
Michelle

Monday, March 2, 2009

A Beanful Day!

Michelle reports a day full of beans today(translation: feeling good, lots of energy!). She even made it out of the house to run some errands with Nanny and Tater Tot in tow. And I think she had her first small meal without the agonizing pain she has been experiencing of late! Big improvement! Jarvie has really taken on the roll of "pharmacist" and is doing a great job helping Michelle with her prescriptions.
There was a party at the Way house yesterday for Little Man's 2nd birthday! The Nanny co-hosted and did a fabulous job with helping out, cleaning up, and entertaining children. It was great for Michelle to be able to relax, visit with guests, and give Tater her full attention. I don't think they could have pulled the party off yesterday without the Nanny. Michelle looked good, and did a great job with the party planning.
Here's to more beanful days my dear!
And thank you to all who continue to offer support : )
Tracey