Until we meet again…

This is Clare’s friend Jamima posting for her family. It is with a heavy heart that we say goodbye to Clare as she lost her battle with cancer on August 1st. We are all heartbroken but are relieved she is no longer in pain. The Wiley and Long family are so thankful to everyone who contributed to the Wiley fund as it truly helped Clare be as comfortable as she could be during her final months.

Many have asked how else they can help at this point, including giving flowers.

In lieu of flowers, the family asks that you continue to donate to the Wiley fund as future donations will go towards a college fund for Sidney. Or if you would prefer, you may donate to the group Fertile Hope which made the blessing of Sidney’s birth possible.

Clare with her brother Tony and her baby boy Sidney.

Lastly, I wanted to share this touching post from her brother Tony about her final moments…

Today at 8:20 am, at home, surrounded by her family, her baby, and cats, Clare passed into peace, calm, and relief. We were all with her at the end, surrounding her bed, holding her and comforting her. In her very last moment, she opened her eyes, looked into Sidney’s eyes, and he looked into hers.

For the last 11 years Clare has fought the ultimate battle, and she has been supported by a remarkable group of family, friends, and caretakers. Within all of us she inspired a fortitude, drive, and strength of character that we admire and struggle to comprehend.

Even to the very end, she was a task driven achiever. She made sure everyone who needed to be here was here with her, and told us goodbye, apologized to us, sometimes intelligibly, sometimes not. When Aunt Julie walked into the room late last night, in the midst of her final struggle, as clear as day she said, “Hi Aunt Julie.” And later in the night during prayer she said, “Hail Mary, get me the fu$k out of this pain.”

Clare will be missed, but she lives on in all of us, and materially so in her son Sidney. Marie and Steve truly deserve awards for parents of the year. I really can’t begin to explain the depth of care they provided, the love and compassion – it is unfathomable.

– Tony Long

Mom’s Super Hero

This is Clare’s friend Jamima posting for her . I just had to share these darling pictures of Sidney who is seriously the happiest (& cutest) baby on the block!

He brings so much light & happiness to that family. As I was visiting Clare last week, she just lit up as she spoke about Sidney. He has his first teeth coming in and he loves to stand on those strong, wobbly legs of his with a bit of help. I have a feeling he is going to be on the move soon! Oh and he’s 6 months old already!

He is truly mom’s super hero…

 

 

A little update

06/08/2014
Added by me, Clare! XOXO

06/02/2014
by Jamima Wolk
I thought I’d post this very touching email that Clare’s father wrote about what the family is going through right now:

The cancer that my beautiful daughter Clare has been fighting for the past eleven years is now winning the war.

Five different rounds of chemo drugs, months of radiation, and 6 major surgeries have taken their toll on her once beautifully healthy body. She can take no more, and the cancer knows it. In its insidious way, it has now cut off all motor control to her legs, so she is either in bed or a wheelchair, and is pretty much unable to move on her own. She is now on a 24/7 morphine pump, and Yolo County Hospice has been superb for medical and spiritual care. If the World consisted only of Hospice people, we could rename Earth ‘Heaven’. Well, almost.

It’s the inability to move herself that has necessitated our getting some in-home care. Marie, David, and I just could not handle it all on our own, in addition to taking care of Sid and keeping our own selves healthy, and enabling David to keep working.

Right now, Clare’s comfort and quality of life are priority number one. So without knowing how we’ll ever afford it, we went ahead and hired the wonderful Fijian In-Home Care people to come in from 10:00pm to 10:00am each night. The Fijians are another beautiful group of people that we now have the pleasure of knowing and working with.

I’m sorry, but it’s come to the point of requesting financial help for the in-home care so that we can make sure that Clare is as pain-free and comfortable as possible. That is our one-and-only priority in life at this point.

Anything that you contribute (help with) will go to the In-Home Care group so that we make sure that the rest of Clare’s life is as peaceful as possible here at home.

The words “thank you” seem inadequate, but I don’t know what other words to use. Thank you.

-Steve Long

– See more at: http://www.youcaring.com/medical-fundraiser/help-clare-her-young-family-fight-cancer-/155285#sthash.62XNuStk.dpuf

Today

Today Ivy kept me company through another new day. She kept me well fed & hydrated and got some smiles and laughter out of me. We watched Frozen and reminisced about Disney princesses of our childhood. Now my dear Ivy is sorting through Sid’s wardrobe, as we have a bubbly chunkster of a little man growing like a weed.

I had visits from a counselor and a most wonderful nurse today who will be working with me at home. The amount of work the RN was able to do while sitting on the couch with me for an hour equated to a week’s worth of phone calls, insurance dealings, driving or getting a driver, parking fees, hold music…you get it.

My future is still as unknown as yours and as hospice helps me to truly get my pain under control I am able to enjoy moments of peace and comfort, learning that this moment in time is yet a transition to a new part of life.

It helps me to write, to not be alone with these words. Thank you for sharing in my life as much as you do and in many different ways. I’m hanging in there with you & I know you are with me too.

The way things are

With as much professional help, spiritual counseling, pharmaceuticals, friends, family, support, prayers, lovely cards and gifts of love, I ache. I hurt inside, deep, deep inside. And I hurt like a person who’s been torn apart and put back together too many times.

And I hurt like a new mom who can’t be with her baby but for a few minutes each day.

I hate this. I don’t have the strength that I have had in the past. There are too many new and growing tumors in my body that it is simply a matter of time that they start to do too much damage. So I’m in a new very scary, lonely, horrid stage having elected to start hospice care (though it is possible to stop hospice at any time if I desire and can manage).

**The clinical trial I wrote about in the past with great hope is of unknown existence. There is no information about if/when it will happen and if it will even accept patients with my specific type of tumor. This is completely opposite of what I had learned about last year.**

David and I thank those of you who continue to help us financially as we would be struggling so much more. I don’t even know how else to express how grateful we are.

With love and tears,
Clare

Prayers, ya’ll

Please spare a prayer or send some positive vibes out like you have so often done to help me on this rugged journey.

I am at UCDMC hospital prepping for an emergency surgery tomorrow morning. Today’s routine CT scan showed another collapsed vertebra, likely caused by a sneaky tumor (and likely the cause of the pain I haven’t been able to control in the last two months).

As a mom I now understand 1000% that I’d prefer this pain and trouble to be mine and not Sid’s. But I’m only human, and I’m my mom & dad’s baby girl, so I’ll always need hugs and snuggles. And damnit I’d take a little break once in awhile too!

Sid is sleeping soundly with his papa. And I’ll get to see him soon.

XOXO

Rough Patch

Two months ago our lives changed in the most profound way. Holding Sidney for the first time and every time to follow redefined love.

Today Sid is such a happy, healthy, strong, big boy. He loves baths, being swaddled, going for walks or car rides, and he is a good sleeper. We are so fortunate. David is a phenomenal father and my Mom is the most helpful, generous, loving, energetic person on the planet.

In these past two months I have been hit with something I never expected. I am struggling through the worst period of anxiety and depression I have every had – my beautiful but ever-challenging life flashed before me when I experienced the love for my very own child – and my normally positive, hopeful side just crumbled. Very slowly but surely I am trying to pick up the pieces, to regain physical and mental strength.

I have a long way yet. I am ever grateful for the chance I have had to share my stories with you here and I hope to get back to it.

XOXO
Clare

Day 10

I’m at a bit of a loss for words perhaps because of: 1) tiredness; 2) being in love with Sidney; and/or 3) something to do with sleepiness.

David and I agree that “Sid tired” is different from “cancer tired”. It’s a way better kind of tired.

And so far we are all relatively well fed, cleaned and…well that feels like success for the first 10 days!!!

Sidney and Daddy

Are you thinking what I’m thinking?