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.

November 22, 2011 - And the winner is...

The winner of the quilt raffle was Lisa Moore.  Lisa is a friend of a friend of mine.  She doesn't even know Kristine but heard of her illness through my friend, Katora.  Katora told Lisa of the quilt raffle and Lisa decided to purchase some tickets along with Katora and Katora's mother. 

When Lisa heard she won the raffle, she decided not to keep the quilt herself but to gift it to Kristine.  I think this is so generous of Lisa.  The quilt has so much significance to Kristine and her family as a reminder that there are so many wonderful people out in the world who care about her journey, family and well being.  It is so comforting to know that this quilt will bring her and her family comfort in the years to come. 

I want to send out a huge thank you to Angie Ramich for making this beautiful quilt with loads of loving care.  Angie, you are one of a kind, my friend!! 

I also want to thank all the donors who helped raise over $1200 during this event.  Your generosity has been a blessing and will help Dave and Kristine to continue to pay the mounting medical bills.

As for Kristine, she is still not doing much better.  She is still in a tremendous amount of pain and has much difficulty eating and drinking.  Her spirits are still good, though hard to tell at times, but I know Kristine is strong and believes she will win this battle.

Please continue to pray for Kristine to heal.  We need all your prayers!!

Thank you!!

November 19, 2011: Update on Kristine's condition and the quilt raffle

Hello Friends and Family,

I know it's been a long time and I apologize for the lack of updates on Kristine's status.  Kristine was doing so well through her first 100 days of recovery from the transplant, which we thought was great news... but as it turns out Dr. Paquette wanted Kristine to at least develop a mild case of grant vs host disease (GVHD).  The doctor explained that transplant patients who do not develop any cases of GVHD have a higher chance of the cancer relapsing. 

About 2 months ago, Kristine started show signs of developing GVHD.  It started with a tingling and numbing sensation in her mouth.  Soon after, hundreds of tiny sores developed in the mouth and throat.  These sores have been very painful.  It is difficult for Kristine to eat, drink or even swallow her own saliva.  Today, she is still suffering from these sores.  She is on two medications for this symptom.

On October 20, Kristine developed another form of GVHD, this time in her eyes.  Her eyes bloodshot and extremely dry.  They are so dry that they feel like sandpaper against her eyelids.  It is also very painful.  She has difficulty even opening her eyes some days.  She uses drops in her eyes on a regular basis and is being put on Restasis for this symptom.

In addition to the above, Kristine has been suffering from severe body aches, an inflamed liver, dehydration,  acid reflux, vomiting, a lack of sleep due to the constant pain she's in and has lost quite a bit of weight.  She is now below the weight she was before she became pregnant with Kahlen (under 120 lbs).  She is withering away before Dave's eyes and he is completely torn apart, feeling helpless, watching his wife suffer.  He naturally wants to help heal her, but the doctor says the GVHD must run its course. 

Dr. Paquette has Kristine on several other medications, I believe a total of 8 or 9, for the different issues she's suffering from.  Two weeks ago, Kristine lay crying in fetal position due to severe abdominal cramping and was admitted into the UCLA Emergency Room.  As it turned out, one of the pain meds Kristine was taking causes constipation.  This was unbeknownst to her and with the painful sores in her mouth, eating and drinking were at a bare minimum.  Many efforts have been taken to get Kristine's bowels moving, but it has been an extremely slow process and she has been in a tremendous amount of pain since this began on October 31st. 

Most recently, Kristine began having lower back pain.  In her words, excruciating lower back pain.  As it turns out, she also has a urinary tract infection and is being medicated for this issue.  She has been on the meds for the UTI since Tuesday with no relief as of yet. 

Kristine lives in a world of pain... and there is nothing any of us can do except give her emotional support.  She's a bit frustrated with the entire situation as you can imagine.  She's always prided herself in being a strong, athletic, active person with a high tolerance for pain; yet her doctor and nurse make her feel as if she's a hypochondriac... so you can imagine her frustration.

Caring for Kahlen and Logan on the days Dave must work and there is no daycare available (which happens occasionally) proves extremely difficult given Kristine's condition.  I'd like to thank Deb, Dee, Marly and Elena for lending a hand when needed to help care for the kids.  The four of you have been a true blessing and we cannot thank you enough.

Today is Kahlen's 4th birthday.  Unfortunately she doesn't get to celebrate it due to a case of the stomach flu.  Logan has it too.  Dave has his hands full caring for all three of them.  My sisters and I wish we could be there to help him.  My husband and I will be there to help next month as we spend the Christmas and New Year holiday with Kristine and her family.  Next month feels like it just isn't soon enough knowing how much Kristine is suffering and Dave is having to deal with. 

Please feel free to lend a helping hand to Dave and give Kristine the emotional support she needs to pull through this.  We need our prayer warriors once again to pray for a full recovery for Kristine from this GVHD and for Dave to have the strength to continue to care for his family in the amazing way he has since this nightmare began on February 28th. 

Kristine will be back at UCLA on Monday to meet with Dr. Paquette.  I'll be sure to post an update on her condition.

As for the quilt raffle, it has been going great!  I cannot believe the outpour of generous donations from friends, family and even perfect strangers.  It's heartwarming.  The raffle was supposed to take place this evening at 7pm, but we had to delay it to 4pm tomorrow.  So I will let you all know who the lucky winner is tomorrow.  Thank you to all!!!