DuFrene Family

DuFrene Family
Such a beautiful family!

Tuesday, June 21, 2011

Day 114 - June 21, 2011

Kristine just left the clinic for her first follow-up appointment and the doctor has decided to let her go home!  Wow!  He said she is doing incredibly well.  Her blood counts are at the low range of normal so he feels confident she will continue to thrive at home instead of at the Tiverton House. 

The same guidelines for her care will apply.  She will need to take the same precautions and have 24 hour, around the clock care.  My sisters, my mom and I will all be helping in caring for Kristine.  Kim and I will take on the first month as we can only help out while our children are on summer break.  My mom will take the month of August and we don't know what we're going to do for September and October.  Between all of us, maybe we can rotate weekly at that point until Kristine surpasses the 100 day mark. 

The first 100 days are the most crucial.  Hopefully after that point, Kristine will be strong enough to get through a normal day taking care of herself and the children.  If not, we'll figure it out along the way.  We've been doing it this whole time, I'm sure we can make anything work. 

I must get back to work now.  Just wanted to spread the good news.

Day 113 - June 20, 2011

Kristine is being discharged from the medical center today and checking into the Tiverton House.  She's very excited to be leaving the hospital today.  She was going stir crazy! 

There was a teaching session this morning on how to care for Kristine and what precautions we need to take, when to know to bring her back into the hospital, what she can and can't eat, where she can and can't go, etc.  Basically, we have to care for her as if she is a newborn baby.  This is why they called her transplant day her second birthday.  Kristine is technically only 17 days old today. 

Basically, if we wouldn't do, give, feed, or expose something to a 17 day old baby, then we shouldn't let Kristine do, have, eat or expose her to it.  This includes alcohol, OTC meds, direct sunlight with no sunscreen for extended periods of time, crowded (germ infested) areas, playing in the dirt, trips to Disneyland, fast food, soda fountain drinks, swimming, and driving.  She is also not allowed to floss her teeth, use a tooth pick, visit the dentist for any cleanings or dental work, and must stay clear of babies and adults who have been vaccinated within the past 4 weeks for with live viruses which include the chicken pox, varicella, rotovirus and the flu mist. 

Kristine will have a suppressed immune system for about a year.  She must take all her prescribed meds on schedule and not miss any doses.  The goal is to get her off all transplant meds from 6 months to a year.  She will have regular clinic appointments where she will have her blood drawn and, for now, monthly bone marrow biopsies.  We must check her temperature at least twice a day and be cognizant of any symptoms that will require her to be taken back to the hospital.  (i.e. fevers, shaking chills, uncontrollable bleeding, vomiting or diarrhea)

We must also be aware of the signs of the dreadful graft vs host disease (GVHD).  Sun exposure may cause GVHD which is why she must wear sunscreen on exposed areas of her skin and wide-brimmed hats when outdoors.  If Kristine were to develop GVHD or some other type of infection, it is possible she would have to be re-admitted to the hospital, then re-released to the Tiverton House.  So our mission is the follow the guidelines which have been presented to ensure Kristine stays healthy. 

As Kristine embarks on this next chapter in her life, please keep her in your thoughts and prayers.  Personally, I would like to keep visitors at a minimum until Kristine's immune system is stronger.  Even though her blood levels are beginning to reach normal levels, she is on transplant meds which keep her immune system suppressed so as to allow the stem cells to graft.  Please feel free to contact her via email, facebook, cell phone, text message or via this blog.  Keep in mind Kristine sleeps quite a bit more than most of us, a lot like a newborn baby.  She tires easily and therefore may not return calls or messages in a timely manner. 

As always...  plenty of positive thoughts and prayers are appreciated! 

Oh, I almost forgot to mention...  Kristine was totally bummed to learn her beautiful, long eyelashes recently fell out.  She never looks at herself in the mirror, so she had no idea.  Dave kept looking at her wondering what was different about her, then realized her eyelashes were gone.  She has also started losing her eyebrows.  Nevertheless, be it as it may, as long as she beats this disease she doesn't care.  She wants to get home to be with her babies, she wants to get back to her family and friends, she wants to LIVE, hair or no hair, as long as she's healthy.     

I personally would like to extend a huge cyberhug to Dick and Teri Shoup, their three girls, Chelsea, Katrina and Nikki, Nikki's boyfriend, Rob, Jon Fondersmith and Julie Gibson for their kind words and donations this past weekend at the annual Fondersmith Family Reunion.  Kristine was touched by your warmth and generosity, as was I.  I love you all!!

God bless all our prayer warriors out there doing a fantastic job helping Kristine to such a speedy recovery!  Our family cannot thank you enough.

Friday, June 17, 2011

Day 110 - June 17, 2011

Hello Everyone!

My apologies for not being able to finish the information I was providing about Kristine's stem cell transplant a few days ago.  However, I have good news today!  I received a call from Dave telling me Kristine is going to be released from the hospital on Monday!!  The doctor said she is doing so well and her blood counts are coming up so that they feel she is doing well enough to be transferred to Tiverton House.

Tiverton House is similar to a hotel where UCLA sends their transplant patients to complete their recovery.  It's located within minutes of the hospital so if Kristine spikes a temperature or shows any signs of an infection, she can be brought right in for immediate medical treatment. 

Kristine is so happy at the thought of getting out of the hospital.  She has expressed, on numerous occasions lately, that she is so tired of being hospitalized.  She longs to feel the sun on her face and the wind blow her bald head.  I was able to about to say to feel the wind blow through her hair, but the little hair that had grown out, is now falling out, so she's back to bald.  That's okay though, as long as she is healthy again, that is AOK. 

Kristine had visitors on the 15th.  Dave brought Kahlen and their neighbor, Deb, who has been such a big help with caring for the kids.  I've attached some pictures from her visit on the left side. 

Well, I'm going to wrap it up for now.  Please continue to pray for Kristine to stay infection free and on the fast track to a full recovery.

Tuesday, June 14, 2011

Day 106 - June 13, 2011

My sincerest apologies for not writing a blog entry sooner. 

The past week has been dreadful.  Kristine has been struggling with those awful mouth and throat sores.  Eating and drinking is like trying to swallow a mouthful of razor blades.  Yet she continues to push through at least one meal a day to keep something in her stomach with all the medications being administered to her.  They were giving her dilaudid but that was causing her to vomit after each dose.  The doctor decided to switch her to morphine.  He eventually had the nurse give Kristine a "PCA" which stands for patient controlled anesthesia.  Now she can give herself a little dose of morphine without having to wait for her nurse to bring her an injection. 

In my last blog entry, I stated I would provide detailed info about stem cell transplantation.  Here we go...

Bone marrow is the spongy tissue inside the bones which manufactures the cells of the blood and the immune system:  white blood cells, red blood cells and platelets.  Each of these different types of cells has a vital role to perform in keeping the body healthy and free of disease.  In leukemia, the white blood cells become malignant and multiply constantly.  Their overgrowth hinders production of normal blood cells by the bone marrow and leukemia cells invade other tissues.  If unchecked these cancer cells can lead to death.  Chemotherapy drugs can destroy malignant cells but also destroy the normal bone marrow cells as well.  In standard treatments for leukemia, the dosages of chemotherapy drugs must be kept low enough so they are not too poisonous to the normal bone marrow, which must continue to produce blood cells once the malignant cells have been destroyed. 

With transplants, very large and more effective doses of chemotherapy and/or radiation are administered to eradicate the malignancy.  In allogeneic bone marrow transplant, this treatment also suppresses the patient's immune system to prevent the donor marrow from being rejected by the recipient.  The transplanted marrow seeks out its place within the bone and begins to produce blood cells from the donor.  When the marrow "engrafts" successfully, the leukemia does not recur and the patient has a chance of long-term survival. 

Kristine received an allogeneic transplant with donated peripheral blood stem cells from our sister, Kat.  I explained that procedure in a previous entry. 

The body's immune system consists of white blood cells, which travel throughout the body in constant surveillance against foreign substances, which might be disease agents.  These cells react and try to destroy anthing they perceive as foreign.  As a result, tissues of one individual will be rejected when transplanted into another person, unless the receipient's immunity is suppressed by drugs or radiation.  This is why Kristine was admisistered the high dose chemo treatments immediately before transplantation.  In allogeneic transplants, the donor's marrow (Kat's) contains cells of her immune system; they may recognize the transplant recipient (Kristine) as "foreign" and cause an immune reaction against the recipient's tissues producing graft versus host disease (GVHD).  To reduce the risk of GVHD after transplantation, Kristine is receiving immunosuppressive drugs. 

Kristine will remain in the hospital for 2-4 weeks after transplant day (June 3rd), waiting for the marrow to engraft and to recover blood counts.   She will be discharged when she has met certain criteria, which includes when the blood counts have recovered, she is able to eat adequately and is free of infections.  Upon discharge, she'll still be at risk for infections and complications, and will need to be monitored frequently by the doctors.  This is why she will then transfer to the Tiverton House which is within walking distance of the UCLA Medical Center.  She will need frequent blood tests, some intravenous medications and may also need more blood transfusions.  She is expected to be at the Tiverton House for at least 4 weeks.

Kristine is expected to need a full year to recover physically and psychologically after transplant.  It is not unusual to require another hospitalization during this time.  It may be necessary to take medications indefinately. 

I'm exhausted, so I'm going to wrap it up for now and continue in the morning. 

Sending lots of love and hugs to all our prayer warriors out there.  Please continue to pray for Kristine and send your positive thoughts her way. 

Wednesday, June 8, 2011

Day 101 - June 8, 2011

Sorry for the delay in getting the pictures posted from transplant day.  I was having PC issues. 

We're 5 days post transplant now.  Kristine was feeling pretty good yesterday and the day before other than a little nausea, annoying headache, some body aches and stiff neck.  However, she was able to get out and walk almost a mile each day (not all at once, she walks 2-3 times a day).  The doctors like her to walk as much as possible to reduce muscle atrophy and body aches from lying in bed all day. 

Yesterday, Kristine and I were having a discussion about those ever dreadful mouth sores.  We were wondering if maybe she bypassed getting them.  We were sad to learn that most patients develop them about two weeks post chemo or once their WBC (white blood count) reaches zero or near zero.  We also learned that those sores develop inside the throat as well AND that's when the real nausea and tummy issues kick in. 
While I was visiting her this past weekend, the doctor said it is quite common for transplant patients to stop eating completely for about two weeks due to the nausea and mouth sores.

This morning Kristine was in terrific spirits.  All smiles.  However, that didn't last long.  Around 9:30AM, Kristine informed me that she thinks the mouth/throat sores are coming.  It is beginning to hurt when she swallows fluids or eats.  She said the inside of her mouth feels raw and bumpy (from the skin cells shedding).  She has also been feeling more nauseaed than before. 

She's been sleeping most of the afternoon.  Many of you may find this amusing or even silly, but Kristine and I stay on Skype most of the day.  From about 8am until one of us falls asleep at night.  LOL!!  She HATES being alone in the hospital.  She has begun feeling a bit depressed over it.  I've been trying to keep her spirits up, but maybe some of you can send Kristine some well wishes via this blog, email, text message, facebook,  or even drop a card in the mail to her.  She really misses Kahlen and Logan and wants nothing more for this journey to be over.  The next couple of weeks are going to be very rough, both physically and emotionally, so well wishes and prayers would be appreciated.

Thank you Deb, for the nice card you sent.  I put it up in her room. 

Tomorrow I will share some info (about stem cell transplantation) with you that I received from Dave and Kristine while I was there.  There's just not enough time for me to add that info today. 

As always, please continue to pray and send positive thoughts Kristine's way.  She really needs all her Prayer Warriors out there routing for her.  Much love, thanks and blessings to you all!

Friday, June 3, 2011

Happy Birthday!!! Day 96 - June 3, 2011

Happy Birthday to Kristine!!!

Kristine received her stem cell transplant today @ 11:10am. It was a quick procedure. First, they had to thaw the stem cells from their frozen state to about 34 degrees. Then immediately transfuse them into Kristine within 10 minutes time as the preservatives added to the stem cells prior to freezing them begin to damage the cells after about 15 minutes. However, once they're in the body, they are fine.

She had two bags of stem cells transfused into her... Over 3 million cells! She began coughing within a couple minutes then stated she was having trouble breathing. She was already suffering from nausea & vomiting right before the procedure, the transplant only made her feel worse.

It's been about 8.5 hours since the transplant took place and Kristine is feeling "weird" as she put it. She's still suffering from a little nausea but is at least starting to eat. The doctors want her to walk 15 laps a day around the transplantation ward... She was able to get in 4 laps this evening. I'm just glad she was even up to going for a walk. She made me nervous tripping over her own feet every so often. I was afraid she was going to fall. I kept telling her, "High knees, high knees!" so she would pick her feet up with each step. LOL!!!

So the next 90 days is when most BMT (bone marrow transplant) patients are at high risk of infection. It can take as long as a year, possibly longer, for a BMT patient's infection-fighting immune system to function normally. Kristine will be closely monitored for fevers and any signs of bacterial, viral and fungal infections. As well as something called GVHD (graft-versus-host disease) which is where the donor's immune cells (the graft) attack the patient's healthy tissue (the host). GVHD is a serious and sometimes fatal complication of allogenic stem cell transplantation. However, being that Kat was such a close match, it reduces the possibility and severity of GVHD in the event that it develops.

Kristine's immune system will be much like that of a newborn baby. It is going to be very important for her to exercise caution when choosing to go out in public. Friends and family members are going to need to use the same caution. No one should come around her If they have been ill, are currently ill or have a family member in their household that is ill or has recently been ill. No one can take any chances and risk giving Kristine any type of infection or illness. So please keep this in mind once she is released and goes home.

Please keep your prayer circles going strong. Kristine is not out of the woods yet! Pray that her body "accepts" the donor cells and that she is free from infection and does not encounter any complications.

Thank you!!!

Thursday, June 2, 2011

Fundraising

First of all, a big shout out to Hayato Yuuki for all his efforts to help raise funds for Dave and Kristine.

The funds raised are truly a blessing and will help pay for the mounting medical bills. Thank you to all those who have contributed to this cause. Your generosity is most appreciated.

With that said, I'd like to tell you all about a new fundraiser that I will help facilitate. A good friend of mine, Angie Ramich -- who is a wonderful seamstress, is almost finished making a beautiful quilt which she is donating to me to raffle off. I will post pictures of the quilt upon completion. I will be selling raffle tickets for $10 each and would love it if all of you would spread the word and help sell tickets. Please call or email me if you're interested. I can be reached at 707-688-7706 or bbcsmom@gmail.com.

Thank you for continuing to support Kristine by keeping up to date on her condition by reading this blog and for all your wonderful prayers.

Day 95 - June 2, 2011

The past few days have been so emotional for me as I've tried to keep Kristine company by being there for her via Skype as she suffers through the side effects of the chemo she received the past 6 days. The chemicals contained in the last two days of chemo caused a burning sensation in her mouth, nose and all over her head. It was very painful. Kristine said it felt like eating a hot chili pepper and the intense burning sensation lasting hours. Nothing helped alleviate that pain and she had to tough it out. Many times she said she thought she was going to die. I couldn't help but cry along with her during those moments.

Both chemo treatments have been wreaking havoc on her digestive system. She hasn't eaten in 3 days because she can't keep anything down. The nausea has been non-stop as well. We're hoping the nausea subsides by tomorrow before her transplant.

Today I arrived at UCLA to surprise Kristine and help care for her and keep her company. Our sister, Kimberlie, who just arrived from Lakenheath Royal Air Force Base in England, joined me in the surprise. Kristine was in a great deal of pain when we arrived and when she saw us, she broke down in tears. Tears of elation, knowing she had us here to help her through this.

We want to be here for the big day tomorrow -- Transplant Day! AKA Kristine's 2nd birthday! The transplant is scheduled to take place around 11am. It will take a few hours to transfuse the stem cells into Kristine. Please continue to pray for Kristine, we still need all your prayers and positive thoughts.

Thank you all so much!!!