DuFrene Family
Such a beautiful family!
Saturday, October 27, 2012
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!!
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.
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.
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!!!
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!
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!
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