7 p.m.

We received official word from UCSF today that the Primary Amyloidosis remains in remission…!!!  YAY…!!! 

The official values are as follows:

Kappa Light Chain: 43.9
Landa: 58

The ratios are even better than the last report.  This is GREAT news…we’re celebrating…!!!       

THANKS for caring,
Dave

Dr. Lloyd Damon, Irene’s amazing oncologist at UCSF, is all grins because Irene continues to defy the odds; the Primary Amyloidosis remains in remission.  It’s now approaching 4 years (the stem cell transplant was in June of 2007)!!!  He’s so pleased with her progress that her next appointment is scheduled in October ...!!!

“X” the chronic nausea (which is manageable but brutal at times) and 3 days a week of dialysis treatment, one would never suspect that Irene is plagued with a debilitating disease.

Thanks for caring,
Dave

We sang this song (written by Keith Getty) at church tonight. I thought the lyrics were appropriate to suffering. None of us want to suffer, and some of us have been called to suffer more than others, but God’s ultimate goal in suffering is that we be conformed into the image of Christ, spending eternity united with Him. Not something easy to hear, but when we open to Him, His love helps us through somehow.

Jesus, draw me ever nearer
As I labour through the storm.
You have called me to this passage,
and I’ll follow, though I’m worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart’s testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart’s testing,
With Your likeness let me wake.

Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart’s testing,
With Your likeness let me wake.

7 p.m.

Thanks for checking in…and thanks for caring so much about Irene’s Journey of Faith…!!!

Irene experienced a really good weekend.  The nausea remained at bay and her energy was good throughout each day.  Yesterday evening we attended church @ Venture in Los Gatos and enjoyed the teaching of our friend, Chip Ingram, http://www.lote.org.  It was also great to see his bride, Theresa…!!!

Today we enjoyed a local nursery and spent the afternoon planting some flowers and ground cover.  I went on a bike ride and, from all appearances, one would never even know that Irene had health concerns at all.  It was a great reprieve.

This Thursday Irene has her quarterly trip to UCSF for blood panels and to see Dr. Lloyd Damon, her Oncologist.

Irene continues to walk in victory…certainly living above her circumstances…for which we’re grateful.

Thanks for caring,
Dave

Yesterday Irene and I had a great day in the San Simeon area and stayed overnight at one of my client’s hotels, The Morgan. We produced a short commercial advertising The Morgan so were able to mix business and pleasure.  The Morgan is very close to Hearst Castle and a variety of other fun areas to explore .... Harmony, Cayucos and Morro Bay to name a few.  The Morgan is named after Julia Morgan, the architect of Hearst Castle.

Looking at Irene’s photo one would never know she has Primary Amyloidosis, struggles with 24/7 nausea and has kidney dialysis 3 days a week!!!  She’s certainly living above her circumstances ....!!!

We also enjoyed a brief visit with long time friend, John Heading, who owns Cambria Drug and Gift Store.

Thanks for caring,

Dave

8.30 p.m.

Thanks for checking in.

Irene’s sister Jane was notified by UCSF that her kidney won’t match Irene’s need.  We DEEPLY appreciate Jane’s willingness and know that this development is disappointing for all parties.  We hope for a positive development soon.

Thanks for caring,
Dave

Thanks for checking in.

Jane Smalley, Irene’s sister, is scheduled for another round of tests at UCSF on March 24th to continue on the path of kidney donor eligibility.

Irene’s nausea remains “at bay” today…it’s tolerable state is a welcome relief.  Her blood tests have been good. 

We’re enjoying a relaxing day on the bay. 

Thanks for caring,
Dave

Irene and I are celebrating March 1st with her sister, Jane, who is pictured below.

When the photo was taken in 2007 Jane was among the throng of blood donors supporting Irene through the stem cell transplant process of Primary Amyloidosis and the 45 transfusions which followed.  I’m sure that Jane had no idea that she would be at UCSF on our 31st wedding anniversary going through the qualification process of donating her kidney to Irene.  As long as the amyloid remains in remission, Irene remains eligible.

We don’t know where this journey is going but we are on our way ....

Thanks, Jane .... and to all of you that care so deeply,

Dave

6.30 p.m.

Thanks for checking in…Irene’s experiencing much of the same and hoping for a better tomorrow.  Her perseverence continues to amaze me and we hope for a BOUNCE tomorrow…

She continues to “live above her circumstances”. 

Thanks for caring,
Dave

7.30 p.m.

Thanks for checking in.

Irene had dialysis today…because her dialysis treatment was cut short again…yesterday.  She was experiencing a significant amount of fistula/arm pain and needle complications. 

So, 4 days of dialysis this week.
She’s back at dialysis again tomorrow….and definitely challenged by the ill effects…today.

Thanks for caring,
Dave

6 p.m.

Thanks for checking in…!!!

Irene BOUNCED back today; the nausea remained at bay and her energy was good.  The body’s resiliance is amazing…

Thanks for caring…............. 

Dave

8.30 p.m.

Irene and I have boycotted Valentine’s Day for 31 years.  It’s not that we don’t celebrate.  The question is why would we limit celebrating the love to one day a year?!  So, our philosophy has been to celebrate the love 24/7/365.

This evening she’s really struggling after dialysis was cut short because of significant pain radiating from her fistula arm toward her broken wrist region.  She will have to make up the 45 minutes at dialysis on Wednesday in order to remove the toxins that could not be removed today. 

The nausea continues to rage, and candidly, she’s self conscious for all of the updates related to her plight…especially on dialysis days…

So, she’s taking no prisoners and is endeavoring to live above her circumstances…which she usually does! 

Hoping for a better tomorrow…

Thanks for caring,
Dave

10.4

That’s Irene’s red blood cell count which is UP.  This is good news;  hopefully an increase in her energy level will be a mirror image of the uptick!!!  She’s still awatiing that…!!!

In spite of the good news above, Irene commented this evening that TODAY was the worst day she has experienced at dialysis in a very, very long time.  The pain was horrid; she fought off nausea and cramps during the all afternoon session which was cut short because of her misery.

Hope she BOUNCES tomorrow…which is the usual pattern.

Thanks for caring,
Dave

7 p.m.

Thanks for checking in.

Irene spent about an hour in the garden today, having somewhat recovered from last evening’s agonizing episode.

Thanks for caring,
Dave

9.30 p.m.

Thanks for checking in. 

Hopefully tomorrow is a better day but this evening is absolutely RUTHLESS.  Following dialysis treatment, Irene’s struggling with a massive headache and nausea at 9+ on a 1-10 scale.

We are convinced that disrupted electrolytes, http://en.wikipedia.org/wiki/Electrolites, are the root cause of that which Irene struggles with following dialysis.  http://en.wikipedia.org/wiki/Oral_rehydration_therapy

Thanks for caring…and hoping for a full recovery tomorrow.

Dave