Please pray for Kristine

Nov 17, 2012

Since Kristine was released from UCLA Medical Center on October 27th, we have seen a significant decline in her health. Her breathing has become more difficult, her heart rate has increased, her weight has dropped, her cough is more persistent, and she doesn't eat or sleep well.

My parents, my sisters and our families, and Dave's family are all gathering together for Thanksgiving this year and hope this will help boost Kristine's spirits. As you can imagine, Kristine is frightened of what may come and is so exhausted from everything she has endured. She's told me she's so tired of being "like this" and she's scared. We are all terrified and praying for a miracle.

We are hopeful that miracle comes in the form of a positive response to the IL2 injections.
Dr. Paquette's appeal to the insurance company was approved for the outpatient injections of Interleukin-2, a clinical trial being tested for GVHD of the lungs. We're just waiting for the injections to arrive so that Kristine can start this new treatment. Please pray this treatment will be successful!
I want all of you to know, though Kristine is terribly ill, she's still here with us and it would do her a world of good if friends and family came to visit her. Throughout her journey, we have seen a decline in the number of visitors as people find it difficult to see Kristine in her weakened state. Please know that Kristine is still the same person on the inside. Her mind and memories are still in tact. I would hate to know that any of you may find yourselves regretting that you didn't take the time to go see her when you had the chance.

To those of you who have remained a constant in her life, I cannot thank you enough for your support. You have been a tremendous help to Kristine, Dave, and our families. Thank you, thank you, thank you!

Today, I want to send out a big hug and thanks to Stacie Baker for taking the reins on the party planning and execution of today's events surrounding Kahlen's 5th birthday celebration. Without you, this event would have been next to impossible to put together.

Again, lots of prayers and positive thoughts for Kristine!! Please don't give up on her, she still has fight left in her! Never give up!

Donations @ Bank of America

Nov 17, 2012 6:33 AM

There's been some confusion as to where donations should be made and I'd like to clear that up. If you would like to help Dave and Kristine by making a donation to the DuFrene Nanny Services, donations can be made at any Bank of America location. The name on the account is David J. DuFrene DBA "DuFrene Nanny Services" and the account number is 164107595532. 

If you make a donation or tribute through the Caring Bridge website or iPhone app, you are making a donation to Caring Bridge, not to the DuFrene's. Funds donated to Caring Bridge allow them to maintain their website free to users, such as myself, to keep friends and family informed on their loved ones condition. 

Donations made to the DuFrene Nanny Services at Bank of America help Dave and Kristine with the extra costs they're incurring due to the need for nanny services when Dave is at work as Kristine cannot care for kids all by herself. In fact, Kristine can no longer care for herself and requires someone to be with her at all times. I will provide an update on Kristine in my next journal entry.

October 27, 2012

She's being released

 

Oct 27, 2012 2:49 PM

 

Dr Paquette is going to discharge Kristine now while we wait to receive a decision from the insurance company.  Since they won't make a decision over the weekend, Dr Paquette decided to go ahead and let Kristine go home.

 

She received her first dose of IL2 last night and was fine.  Assuming the insurance company approves the outpatient injections, Kristine wil discontinue photopheresis.  If they deny the appeal, Kristine will remain on photopheresis.

 

Please include a prayer for the approval of the IL2 and continue prayers for Kristine to pull through.

 

Kristine would like to thank Mark for coming out and visiting her at UCLA.  She really enjoyed your visit!

Help save a life, register as a donor

Kristine would like to raise awareness for the need of bone marrow/stem cell donors.  Wouldn't it be amazing to help save a life?  Well, you may be the one person who is a match to someone who is currently waiting for a bone marrow transplant.  Donating bone marrow/stem cells is not a painful experience as one might think.  In most cases, it's as simple as giving blood.  Registering to become a donor is even easier.  It's a simple swab of the inside of your cheek.  Please become a registered donor today by going to www.marrow.org.

Biopsy out, IL2 in... maybe. 10/26/2012

       

The ID doctor who initially saw Kristine felt it was necessary for her to get a bronchoscopy done to obtain a biopsy of the fungus in her lungs. A bronchoscopy would require Kristine to be intubated, which means being extubated after the procedure. This concerned Dr Paquette. His fear is that Kristine would have to go on a ventilator after the procedure and wasn't sure how long it would take her to get off of it, if ever.

After consulting with the ID doctor who specializes in transplant patients, Dr Paquette decided the risk outweighed the benefit. So no biopsy for Kristine. Instead, they have decided to increase the voriconazole dosage to treat her fungal infection. They feel the cause of Kristine's decline in lung function is mainly due to the GVHD so they're going to try a new drug treatment called Interleukin2 (IL2). This would be an 8 week treatment with subcutaneous injections daily.

Well, the insurance company denied the IL2 for outpatient treatment so they have submitted an appeal. In the meantime, while Kristine is in the hospital, they can administer IL2 as an inpatient treatment. So they are supposed to start her first injection tonight. Dr Paquette is expecting Kristine to experience fever, chills, nausea and flushing. Assuming she doesn't have any acute reactions to the drug, she may be discharged tomorrow.

We're hopeful Dr Paquette will be able to convince the insurance company to approve the outpatient IL2 injections. With that said, please include Kristine in your prayers tonight and every time you pray.

Tonight, Kat and I sleeping over in the hospital room with Kristine. A pajama party in room 6121!! We're going to watch movies on the laptop and stay up all night since there's no getting any sleep in here with the nurses coming in and out all night poking and prodding Kristine. LOL!!!

Prayers, prayers and more prayers please. Thank you!!

Infectious Disease appointment update 10/24/2012

          

The following is what occurred on Wed, Oct 24th:

The infectious disease (ID) doctor is admitting Kristine into the hospital for immediate treatment. She said she is flabbergasted that she was not referred here (Infectious Disease/Internal Medicine) sooner by the pulmonologist. She's angry (as we are) at how Kristine's case has been handled. This is very serious. They have to try try to get this infection under control ASAP.

Not good news, but not giving up! 10/15/2012

Written Oct 15, 2012 2:53am
          

Since I last provided an update, Kristine's condition has been progressively declining. She is now wheelchair bound when she leaves the house and is on oxygen 24/7. She still has GVHD in her eyes and lungs. She has been undergoing photopheresis for about a month now with no improvements as of yet, but the doctor said that it could take at least 6 months before they might see anything.

Kristine was seen by Dr. Wang, the pulmonary physician, this past Wednesday. They did a CT scan and another PFT (pulmonary function test). She received distressing feedback.

Many of you might not be aware that Kristine developed a fungal infection in her lungs about 3 or 4 months ago. This infection has been getting progressively worse. Her CT scan revealed nodules growing in her lungs, which Dr. Wang pointed out to Dave & Kristine on the x-ray. In not so many words, she basically told them that Kristine's fungal infection is continuing to worsen given all the experimental drug trials she's been on and that they have no other drug treatments they can provide in addition to what has already been tried. She then said there's not much else they can do to stop or slow down the growth. If they can't keep the infection from worsening, she will eventually have to go on a ventilator and that it may be time for them to get her affairs in order and decide what they will do when that time comes. She didn't provide a time frame but given the progression thus far, well, you can draw your own conclusions.

Despite this terrible news, we are not so quick to accept it! Don't get me wrong, Dave and Kristine were completely distraught with such unexpected news, but my sisters and I are rallying up the troops to get second and third opinions, as well as looking into other types of natural treatments thru diet to hopefully slow down the progression of the fungal infection.

Whether you pray or not, please say a prayer for Kristine to find the strength to keep fighting her fight. Say a prayer for Dave too, to help him continue to be the rock that is holding this family together. Say a prayer for their numerous friends--Dee, Stacey, Dave, Scott, Daryl, Christina, Carissa, Dan, plus my mom and sisters and Sean--who have been helping care for the kids and household when needed.

Let's get ALL our prayer circles going FULL THROTTLE to help Kristine win this battle! She is terrified of what is the inevitable for all of us at some point. She is not ready to say goodbye to Dave and to her beautiful babies, Kahlen and Logan, or to any of you reading this. Kristine is a fighter, but she needs all our help to keep her spirits up and her thoughts positive.

I'll be going to HB to help care for Kristine next week. We are going to see an infectious disease specialist on the 24th and we're praying he will have some ideas on how to slow down or cure her fungal infection. In the meantime, Dr. Wang is to discuss lowering Kristine's immuno-suppressant drugs with Dr. Paquette (Kristine's oncologist). We're hoping that by lowering her immuno-suppressant drugs, Kristine's body will be able to keep the fungal infection at bay. However, this poses a big risk to Kristine if she comes down with any other type of illness, such as pneumonia. Kristine must otherwise remain healthy if she is going to have a fighting chance.

It is only natural that Kristine's thoughts go to that bad place now and then. She has so many things she wants or needs to do. If you happen to be running errands or to the store, call Kristine and find out what she might need. I know she needs ink for her printer, she might need a bite to eat (because sometimes she is too weak to cook), she needs help scanning documents into her printer so she can complete some medical paperwork (she's been needing this done for over a month now). There's so many ways people can help, but I know Kristine might not remember if you ask her, which is why I'm providing specific details. Oh, and there always seems to be a prescription or two that needs to be dropped off or picked up, so that's another thing someone could do.

I know Kristine wants to begin making videos for the kids, to teach them things or share her thoughts on things that will happen in the future--like when Kahlen wants to start wearing make-up or Logan starts driving or just a little something they can watch to see their mommy so she can tell them how much she loves them and they'll be able to see and hear HER saying it to them. So Kristine may need a memory card or DVDs, or she may need someone to help set up the camcorder, burn the DVDs, etc.

Please don't be afraid to offer help. They NEED it. On Dave's days off from work, offer to watch the kids for him so he can run errands without having to take the kids along with... those of you that are parents know that it takes twice as long to run errands when you have the kids because someone always has to use the bathroom as soon as you walk into the store or someone is tired and has a meltdown.

Those that are out of town can help by making donations to the account set up by Sean at Bank of America to help Dave pay for the mounting services needed due to Kristine's condition. Not only do they have nanny services, Kristine is supposed to have physical therapy three times a week ($40 copay with every visit), and a nurse is supposed to come out two to three times a week to flush her pick line (copay $40/visit). Though the PT is needed due to Kristine becoming weaker from muscle loss and lack of mobility from her compromised breathing, Kristine hasn't been getting the PT she needs because it's just not affordable. When home, I believe Dave is the one flushing her pick line to avoid that added expense.

 

Here are the bank account details for donations:
Bank: Bank of America
Name of the account: David J. DuFrene, doing business as (DBA) "DuFrene Nanny Services"
Account Number: 164107595532   

If anyone has any info or referrals they can provide to help us get a second opinion on Kristine's condition or on how to fight off or cure her fungal infection in her lungs, please DO NOT HESITATE to contact me via facebook, phone or email.  My email address is bbcsmom@gmail.com and my phone number is 707-688-7706.  PLEASE HELP US SAVE KRISTINE'S LIFE!!!

We need more prayers please! 08/03/2012

August 3, 2012  10:04PM

Kristine had her first go at the blood filtering (called Therakos photopheresis) last Thursday. It went well with Kristine feeling a bit fatigued afterwards. When she went back in for her second treatment the following day, the nurse was unable to get the needle into Kristine's vein. She tried and tried, then Dave asked her to try again but the nurse was unable to succeed. So now Kristine must have her port put back in her chest so that she can resume the photopheresis treatments. She's scheduled to have the port put in on Monday. She will then restart her treatment going twice a week on two consecutive days for 4 weeks, rest for 1 week, then resume treatments again every other week, twice a week on consecutive days. She'll have the port in for approximately three months while she undergoes this process.

Kristine was also recently placed on oxygen. At her last pulmonary function test, her oxygen level dropped to 85 just 3 minutes into the 6 minute test. Therefore, she must utilize the oxygen when she walks around and while she sleeps.

Currently Kristine's resting heart rate is hovering around 120 and her oxygen is at 90 when she's doesn't have her oxygen tubes in. If she puts them in, it hovers around 95.

Logan and Kahlen recently came down with colds and Kristine unfortunately caught it. She notified Dr. Paquette and they must keep a close eye on her as this is the one thing he warned her about that he didn't want to happen.

So we need more prayers and positive energy coming her way!! Please keep Kristine in your thoughts and give her a call or shoot her a message via the guestbook here on Caring Bridge or on her Facebook.

Thank you to all those who have been helping the family and sending well wishes. We truly appreciate you!

Update on Kristine & how you can help

I'm on my way back down to Kristine's to help lift her spirits. She met with Dr. Paquette Monday and came home once again feeling defeated. I fear she is losing hope and possibly her will to keep fighting. 

Her breathing is progressively becoming more and more laborious and her heart is trying to compensate for the lack of oxygen her body is getting, so Dr. Paquette has decided Kristine must undergo a 6 week blood filtering process. It's a 3 hour procedure that must be done twice a week on two consecutive days at UCLA Medical Center which is at minimum an hour away with no traffic.  

The ongoing decline in her health is taking a toll on Kristine's spirits. She's stressed, tired and has not been feeling well the past couple weeks. She has taken a few spills (fallen) both in and out of the house as her body is becoming more and more weak and she isn't as steady on her feet as she used to be.

She's down to 108 pounds but looks as if she barely weighs 90 pounds. Some of her meds have a side effect which causes her skin to thin and this only adds to her look of frailty. 

I know with all the help of friends and family, we can lift her spirits and bring back the fight in her. 

Many of you have inquired on how you can help. Well, thanks to Dave's brother Sean, he put the wheels in motion for Dave & Kristine to hire a nanny as Kristine is no longer able to care for the kids when Dave is at work.  With the medical bills piling up, there is little money left to afford nanny services.  

The nanny is actually a very close friend of Dave & Kristine's.  She's known them for years and has helped with babysitting the kids since they were born.  She is able to work very flexible long hours and even overnight shifts when Dave must work a double.  

Sean has helped Dave and Kristine set up a bank account at Bank of America so that anyone who wants to help subsidize these costs may do so, as this bank is easily accessible in almost all areas throughout the country. 

If you would like to contribute in this manner, no matter the amount, it would be so very helpful!  You may do so at your local B of A branch.  Please email me for the account number at bbcsmom@gmail.com as you will need this info to make a deposit. 

Kristine is meeting with the pulmonologist at UCLA this afternoon and I will provide an update afterwards. 

Remember to sign the guest book and leave Kristine an encouraging message.  Help bring back that fighting spirit we all know her to have. 

Thank you all for stopping by this website to check on Kristine's status. I hope this message finds you and yours happy and healthy. 

~Karen

P.S. Remember to utilize www.caringbridge.org for more updates. See previously dated message below for more info.

Caring Bridge

Moving forward, I will be utilizing Caring Bridge to post updates to Kristine's condition.  I feel I will be able to provide more timely updates via my iPhone.  Caring Bridge has an app you can download right onto your smartphone, so for those of you who have one, please download this app to stay abreast on updates. 

If you don't have a smartphone, you can access Caring Bridge on the internet.  Kristine's page can be accessed at www.caringbridge.org/visit/kristinedufrene.  It's still work in progress, so stay tuned.

Thank you and keep praying!

March 24, 2012

I apologize that I've not taken the time to provide more frequent updates on Kristine.  Since October, Kristine has been fighting GVHD (grant vs host disease).  It has been quite the battle and it's nowhere near over yet.  It has now spread to her lungs and she is experiencing shortness of breath and has had a nagging cough for months now.  Dr. Paquette said it's going to be a long, hard battle.  He upped her Prednisone as well as added more medications to Kristine's large stock pile of pills she must take daily.  Kristine was not happy about the Prednisone, which is a steroid, but will do whatever it takes to beat this disease.

Good news, she is still cancer-free, thank goodness!!  Kat's donor cells are just kickin' her @$$ for the time being.  She gave Kat a hard time about that the last time she saw her.  Keep in mind, it is not Kat's fault that Kristine has GVHD.  GVHD is a normal and expected side effect of a stem cell transplant. 

On March 6th, Dave and Kristine suffered the loss of Dave's father, Jack.  Jack was laid to rest on March 17th and the family was touched by all who came to bid their goodbyes. 

I'd like to share a story about Jack with you...

Last summer, while helping care for Kristine and the kids, Chloe and I went to visit Jack at his house.  The kids were running around the yard.  Jack had a couple of child-sized adirondack chairs that he had purchased for Kahlen and Logan.  Kahlen's was pink with the Disney Princesses and Logan's was blue with Disney Cars characters.  Needless to say, with three kids and only two kiddie chairs, you can imagine the struggle between Chloe and Kahlen for that pink princess chair!

Jack excused himself and disappeared for about 20 minutes.  When he reappeared, he had a pretty pink princess chair in hand for my little Chloe.  He had driven over to the store and bought Chloe her own chair!  I was so touched by this sweet and generous act by Jack.  I had always found him to be quite intimidating, but realized at that moment, he was a teddy bear on the inside. 

Thank you Jack, for always being so kind to me and my family when we crashed your house during our visits.  You will be terribly missed. 

As Jack watches over his loved ones, please continue to pray for Dave and Kristine.  They have had a difficult time dealing with Jack's death.  It's always more difficult a few weeks after everything has settled, so keep checking in on them from time to time.  Also, please continue to pray for Kristine to beat this GVHD and to live a normal, healthy life once again.