Wednesday, February 27, 2013

California Tour







On Monday, Jacquie and Zia took me for a ride down the coast to Carmel.  They kindly waited while I did some pictures at Pescadero Point.   I have lots of others of course and will probably put more on the blog over the next few days.   In the meantime though, Jacquie and Zia went to the clinic at Stanford yesterday for the last time.  They removed her catheter so she has crossed another milestone in her path to the cure.

I just talked to her and Zia.   It seems they went to the Olive Garden today for lunch to celebrate her freedom.  Sorry I missed it!

Sunday, February 24, 2013

Blessings

How does one express gratitude to a person who has saved the life of someone you love?   It's a common enough theme in literature that one would think that I could reach into that vast wealth to extract the perfect means to express my thanks.  But my problem is not that easily solved.

So how do I thank these people who have dedicated their lives to helping others?  I just can't seem to find the right words.   Some might say theirs is just a job and that, in this age of specialization there is a detachment that goes with being a professional.   I have seen that at times over the last six weeks and I have to say that I really respect the dedication that it takes to cause someone pain in the short term to help them heal in the long term.   But what I was not prepared to see, though I hoped that it was there, is a professional compassion that glows in the eyes of these dedicated individuals.

There have been many gifts that have risen from my experiences of the last while but witnessing real  compassion has been one of the greatest.   People in the health care professions are for the most part, special.   I think that if I had the opportunity to live my life over I would want to do it in health care.   These people are gems and there are so many of them.

When I left the hospital for the last time, I wanted to embrace every one of the fine people who have worked so hard to help my sister through this terrible ordeal.   There are so many of them!

Unfortunately, that just wasn't possible.   I never saw Karen, or Sarah the nurses, or Sarah the Physician's Assistant.  Didn't see Aimee and so many others, I did see Marie but she was busy, I only saw Sandy the once.  I never even met Dr Negrin but I would like to extend my best wishes to him and to all the other wonderful folks at Stanford BMT.   God Bless You All!

I did get a couple of portraits of Aimee Jadav and Lenny Navarro and I would like to share them with you.   One doesn't often get to see pictures of angels very often!   I love them all and I am so very grateful to each of them for saving my dear sister's life.

Thank You!   You wonderful people!   Thank You!



Friday, February 22, 2013

Jacquie's Home!

This has been quite a week.   It's Friday today and I have been planning to update the blog for several days but we have been very busy.  Now you must understand that this is Zia's normal pace.  He seems to have two modes, work and sleep.  That's it.   This week has been especially demanding because we are closing up the safe house and have brought Jacquie home.  She's been away for four months, her transplant was on November 22 and her recovery, as you all know has been slow but steady.  She has a long way to go still but being home makes a very big difference.

Zia is back at the apartment right now, cleaning it up and bringing the remaining things that need to be moved out.   It is a big job and I confess I feel a bit guilty for leaving the rest to him but Jacquie still requires someone around 24x7 who can get her back to the hospital if anything happens.

Today is Day 92.   Yesterday we went to the hospital for the dreaded Bone Marrow Biopsy.   This procedure requires that the doctor drill into the hip, extract liquid bone marrow, and take a small sample of the bone.  It is a painful procedure that requires courage and endurance.   Jacquie came through it with grace.  As she endured she told us the story of her beloved husband, the trials he endured in his early life and his accomplishments.  She is proud to be his wife and partner and I am proud to be her brother.

I am heading home in the next few days and handing my responsibilities over to Zia, the man who loves her heart and soul.  It has been a wonderful experience to be a part of this and I leave with the confidence that Zia will continue to be the loving, hard working, caring and compassionate individual who I am priveleged to call my brother.  I know that there is nothing  Zia wouldn't do to ensure her complete recovery and I feel that I am heading home a better man for getting to know him.

It is rather strange to say but there have been many gifts that have come from this terrible experience.  I am proud of the way that every one of my brothers and sisters stepped up to contribute whatever they could to Jacquie's recovery.  I spoke earlier of the race to become the donor, of the sacrifices each person has made to support both Jacquie and Zia over the last year.  The Emlers are a loose group, we are spread all over the continent.  We hardly talk but when needed we will move heaven and earth for those we love.  It is our greatest characteristic and I am proud to be a member of this crazy, crazy family.

Saturday, February 16, 2013

Free Ride!

I think I mentioned that we had Jacquie's car interior detailed last Friday.  Three full days later, Tuesday, she was finally able to ride in the car without having to wear her face mask.  What freedom!  She was so happy!

We drove to Sunnyvale and then to Los Altos that afternoon and though she never got out of the car, Jacquie had a great time.

The thing that strikes me here is how close all these communities are.   You can easily drive through four cities in an hour around here without once venturing on to the freeway.

On Monday we also got the ok for her to eat fresh food.  Up until now, she has had a very restricted diet consisting mostly of packaged and processed foods.   This was necessary to maintain her health and limit her exposure to possible infections.  But now her white blood cell count is good and she is being slowly withdrawn from the cyclosporin (which is an immune system depressant) so she can handle well washed salads.  Well, that's a big thing as you can imagine.  So we did a big shop and made a salad with sliced chicken and balsamic vinegar dressing.

We go for short drives together pretty much every day now.  Yesterday we went to Cupertino to see the  library.  Frankly, there were too many people there and we left pretty quickly.  Even with her mask, we need to be careful around people as we don't want her to catch a flu or some other airborne nasty!

She also has to protect herself from the sun.  This means lots of sun screen and no exposure whatsoever to direct sunlight.  Her clothes have to be completely opaque and she is supposed to wear a hat with a minimum 4 inch brim during the day.

Next week we leave the safe house for good hopefully, and return Jacquie to her home in the mountains.   There still a lot to be concerned about but it is a very big step.   Zia is working like crazy to get everything ready for her homecoming.   I am really glad to have had the chance to get to know him better and frankly, I'm impressed.   He's smart, compassionate, very hard working, and he loves my sister deeply.   One could not ask for more.


Monday, February 11, 2013

Day 81

It's Monday and we are at the hospital for Jacquie's regular check up.  She's doing really well these days, so well that it is easy to over estimate her condition.  As you know, we started an exercise program for her but have had to suspend it for a while as her back pain is quite challenging.

On the weekend a couple of very charming neighbours came to the apartment for the first visit Jacquie has had since I have been here.  They are wonderful people and have been very supportive to Jacquie and Zia through this difficult time.  As you know, we still have to be very careful about exposing her to out side forces so we had them take off their shoes and wear masks and we chatted together for over an hour.  Jacquie seemed to be having a great time.  In the middle of the visit she got a video call from Kerrie and her beloved little Brady.   She was really excited as Brady was blowing kisses to her from thousands of miles away.   Zia arrived after that and we chatted and laughed for a while longer.

It was when they left that I realized what a mistake I had made.  Jacquie was barely able to stand up and was shaking so violently that we quickly got her into bed so she could rest.   Not a little scary I must say.

Of course she is much better now but I felt I should write about this so that everyone knows why we are so careful about visitors.  We've decided that she should not have any more visitors until we get her home from the safe house and then keep the visits to 1/2 hour a day for a while.   She's doing well but it has been an ordeal and it is going to take her quite a while to regain her strength.

So far as numbers are concerned, they are still adjusting her meds to accommodate her recovery.  The cyclosporin withdrawal regimen continues and she is down to 175mg twice a day now.  Her BP has been up and down a lot and we are tracking that pretty carefully.   They adjusted her BP meds last week and we expect they will be doing it again soon.

Her spirits are pretty high.  We had the car interior detailed last Friday so she will be able to ride in the car (with the vents closed) without her mask.  This is a big step as the mask makes her feel quite claustrophobic.

Currently, the plan is to take her home on the 19th.  That will be a great day...

Friday, February 8, 2013

Waiting, Waiting....

The thing about healing is that it takes its own time.   It's a precise process and cannot be rushed.  Our experience of healing is often about waiting.   It is aided by being calm and confident that the body is doing everything it can to repair itself.   We can only create the conditions to support that process.

So many of the really good times in my life are quiet times.   That is part of the reason we live on an island.  Not that it takes an island to foster that kind of time but it definitely helps.   My favourite times now are when Mischa and I relax together in front of the fire.    She often falls asleep in my lap as we sit and feel that heat coming from the flames.   I used to hate winter but I have found that winter is the time when that happens and now I look forward to those quiet and beautiful moments.

It's pretty easy to wait when you are with a dog.  They do it naturally and completely.  They don't try to preoccupy themselves with little diversions.  Dogs know how to relax into the moment.  I'm learning to do it and I'm getting good at it.  Who says you can't teach an old dog new tricks?