Monday, August 27, 2012

After only one week at home following a difficult round of chemotherapy, compounded by a life threatening stay in the Intensive Care Unit, Lexe reported to the hospital to begin her 4th and final round of chemo.  The day started with a visit to the Cardiology Department for an echocardiogram and an EKG.  Lexe then had clinic with her Oncologist who drew labs and examined her.  Clinic was followed by a spinal tap and bone marrow aspirate in the outpatient surgical suite.  Following the surgical procedures, Lexe walked herself up to the Cancer Unit to begin chemotherapy.  She did not want to be pushed in a wheelchair.

This round of chemo will last six days.  Chemo will be administered twice per day.  Lexe will be given both Ara-C and Mitoxantrone.  Mitroxantrone will be given for the first time and is a pretty nasty drug.  The drug is actually blue in color and hard on the heart.  The fourth and final round is called Intensification II.

During clinic Lexe was told that her heart has been slightly effected by a combination of chemotherapy and the shock of her Intensive Care experience.  The echocardiogram she received today was compared to her first echocardiogram given prior to any treatment.  Lexe's heart is not squeezing as hard today as it was prior to treatment.  Her physician is hopeful that this condition will correct itself once treatment is concluded and Lexe is fully recovered.  As added protection for her heart, prior to Lexe receiving her dose of Mitroxane, she will be given the drug Dexrazoxane which helps protect the heart against cardiotoxic agents.

Lexe has lost weight and is still a bit fragile but her physicians feel that pushing ahead with the final round gives her the best chance to beat leukemia.  We are all a bit nervous about things but we have put our trust in Lexe's providers and are hoping for a smooth course of treatment.  Lexe is calm and confident and is constantly telling us that everything will work out just fine.  So with Lexe's confidence we forge ahead!!

Tuesday, August 21, 2012

After 17 long challenging days, Lexe was released from the Intensive Care Unit last Sunday.  We are grateful for the wonderfully skilled providers who attended to Lexe during her stay.  Lexe has little recollection of her stay in the ICU which is a good thing.   Lexe was transferred back to the regular cancer unit where she spent Sunday night.  After meeting with her Oncologists on Monday, Lexe was sent home.  It is amazing that she does not need oxygen given the shape her lungs are in.  Lexe is doing her part to fight through this setback.  She is weak and somewhat frail but we are so glad she is home.  Everything Lexe does takes a lot of effort including walking, stairs, eating etc.

Lexe's third round welcome home sign

It has been decided that Lexe will start her 4th and final round of chemo next Monday.  She will have another bone marrow aspirate and spinal tap followed by the start of a six day chemo cycle.  We are all very nervous given the events of the last several weeks.  We are trying really hard to get Lexe to eat and have till Monday to get some of her weight back.  Lexe will be followed by the Pulmonary team over the remainder of her treatment.  They want to baseline her pulmonary abilities once she is strong enough to take the Pulmonary Function Test.  Lexe will need to perform regular lung exercises for the foreseeable future.  In order to minimize complications during round four, we have decided, in conjunction with Lexe's physicians, to limit Lexe's exposure to visitors.  This was a difficult yet necessary decision.  We encourage all of Lexe's support group to continue to stay in touch with Lexe via texting, Facebook, Skype, phone calls, emails, or blog messaging.  This ordeal will soon be over and at some point normalcy will return!  Please keep your relationship with Lexe active!

Lisa Oyen, U of A soccer coach, forwarded to us a great picture last week.  The team is wearing a special warm up top this year in honor of Lexe.  Every warm up jersey will be number 13, Lexe's number.  The girls have all reached out to Lexe via texts, Facebook or letters.  Even though we have never had the privilege of meeting many of these young ladies, they hold a special place in our hearts.  Thank you girls!!  The attached link tells the story:

Lexe's future U of A teammates honoring her by wearing number 13 on their warmups.

Lexe's friend Ellee Duke the performer who wrote "I Came To Win --Lexe's Song", has now hosted the song on iTunes.  Ellee will soon release her first album which I believe includes "I Came To Win".  All proceeds from purchasing the single off of iTunes will go to Lexe.  We feel, as does Ellee and her family, that the song was heavenly inspired.  Ellee wrote the song April 22nd just days after Lexe's diagnosis.  Little did we know then just how true the lyrics of her song would come to be.  Thank you again Ellee for such a beautiful inspired song. Please support both Ellee and Lexe and download this great song.  The song will compliment any playlist. The attached youtube link is Ellee introducing her song:

Wish Lexe luck as she begins her fight with the FINAL ROUND!!

Friday, August 17, 2012

We are starting to see light at the end of the tunnel.  Lexe is still in the Intensive Care Unit.  Her lungs are still sick but today she was taken off of the vent and put on high flow oxygen.  Her chest x-ray looked pretty good today, there is still room for improvement.  Lexe was so happy to have the vent tube taken out.  She can now smile and finally drink.  Her throat is very sore and her voice is weak but that should resolve over the next couple of days.  The plan is to keep Lexe in the ICU for the next several days.  She has been cleared to start eating soft foods but she has no appetite.  They placed an NJ Tube in her about 10 days ago so she has received some calories.  Lexe will soon be moved back to the cancer unit to continue her recovery.  She lost weight and muscle mass over the past two weeks so she needs to take on as many calories as possible.  Lexe's physicians have told us that recovery from ARDS can take months.

One of the physician in the ICU told us today that immunocompromised patients that develop septicemia from Streptococcus Midas have a mortality rate of 60%.  Add to that Acute Respiratory Distress Syndrome, which  has a 40% mortality rate, and it is easy to conclude that Lexe beat some tough odds.  The reality of how sick Lexe got is very sobering.

The past 15 days have been a very trying experience for our family and certainly for Lexe.  We have felt the prayers and support from everyone.  Lexe has had well over 110,000 hits on her blog from all over the world.   Concentrated hits have come from the United States, Canada, UK, Finland, Russia, Sweden, Australia, Austria, Netherlands, Brazil, Ukraine, Belgium and the list goes on.  We are touched that so many people have taken an interest in Lexe.

Monday, August 13, 2012

We feel we may have reached a point of stability.  We think we are safe in saying that but are never really sure so this post is written with crossed fingers.  Lexe's lungs are still very sick but today we were able to see more of her ribs, her diaphragm and a better view of her heart on the chest x-ray.  The bottom half of both lungs are still cloudy.  All of her IVs have been removed and medications are being administered through her central line.  The plan is to start stepping down her pain medication to avoid withdrawal symptoms.

Now that Lexe has developed some of her own immunities she has been moved into a new room in the Intensive Care Unit.  She has windows which allow her to start adjusting to day and night cycles.  The room is also in a low traffic area of the ICU helping her  develop a normal sleep cycle.  She continues to be on the vent.  The plan is to work towards having the vent taken off near the end of the week if her lungs cooperate.  Lexe is very weak and it is a struggle to even raise her arms.  They sat her up today for the first time and she was able to tolerate it for about 15 minutes.  Lexe's body has really been taxed during the last 11 days and recovery is going to take time.  We are so grateful for the wonderful staff of caregivers in the PICU, they saved her life.

Lexe still needs to complete the last round of her chemotherapy to treat her leukemia.  It's hard for us to even image the thought.  I guess we can worry about that after we get her out of the ICU and stronger.

Thank you again for all the prayers and well wishes that our family has received during this very trying ordeal.

Sunday, August 12, 2012

This morning at 4:00 am Lexe started have troubles keeping her oxygen saturations levels in a normal range.  Her ventilator pressures needed to be increased again in order for her to get enough oxygen.  This is a setback!!  Her chest x-ray this morning showed increased secretions in her lungs.  Her heart is again rolling left against her lung.  We will find out this morning what the game plan is for the day.

Lexe body is fevering hard and she is trying to cough.  Now that she is off the paralytic medicine you can see her facial expressions and it breaks our hearts to see her pain.  Every time they suction her lungs through her vent tube Lexe will squeeze your hand with great force.  It seems to be a very unpleasant experience.  She is disoriented yet aware of her situation.  On occasion we see her tears.  We write most of these posts through our own tears as well.

Saturday, August 11, 2012

The last nine days have been an emotional roller coaster for our family.  We have come to understand that things in the Intensive Care Unit change very rapidly.  Don't ever get comfortable because you never know what is coming next.  With that in mind, Lexe has had a good last couple of days.  We are afraid to even say that!!

Today Lexe's ANC count, a measure of her own bodies immunity, jumped from 300 to 1400.  It is rare to see such a jump over a 24 hour period.  It now means that Lexe can help herself in clearing out her own lungs.  Several day ago Lexe was placed on an oscillating vent to help break up the material in her lungs.  This type of vent sends small rapid infusions of oxygen into the lungs, shaking them, to help diffuse all the secretions.  Today Lexe was transitioned back to a regular vent.  She tolerated the transition and seems to be much more comfortable with the vent.  Lexe was also taken off the paralytic medication but remains heavily sedated.  Lexe continues to fever.  She remains on the cooling blanket, however, now she is off the paralytic medication her shivering reflex is active making the blanket less effective because shivering heats the body.

It was tough for us to leave her tonight because she was in pain and very disoriented.  She was trying to communicate with us but with the vent tube in her mouth it was impossible.  The next step will be to try and take her off the ventilator.  We don't know when that will be but we will keep everyone posted.  We are all praying for this ICU experience to be over.  We are so proud of Lexe.  She is fighting so hard her spirit and determination are amazing.

Thursday, August 9, 2012

Yesterday started out with such promise.  We were all expecting a great day but unfortunately Lexe suffered a setback around 1:00 pm.  Lexe's left lung collapsed causing her oxygen saturation rates to drop to life threatening levels.  It was a very tense situation as the team of providers in the ICU worked hard to stabilize Lexe.  It was very hard to watch.

The decision was made to perform a bronchoscopy.  The pulmonary team inserted a camera and cannula into her lungs to deep suction her lung fields.  She has very thick secretions in both lungs making suctioning difficult.  The physician removed as much of the secretions as possible.  Lexe tolerated the procedure well.  Later in the day her left lung re-inflated. Both lungs still contain secretions affecting Lexe's respiratory output.  She remains ventilated and sedated.  However we hope her oxygen saturation level will improve.

Today the pulmonary team performed another bronchoscopy and removed more of the secretions.  At present Lexe remains critically ill.  We are very hopeful that Lexe can have a quiet evening.  Her heart continues to beat strong and hard, and her fluid output is improving.  At some point, most likely today, Lexe's paralytic medication will be reduced.  She needs to start moving to prevent secondary problems associated with her paralytic state.

Tuesday, August 7, 2012

Today has been a day of Lexe holding her own.  She is putting up a big fight!!  The medical team in the Intensive Care Unit have been able to stabilize Lexe's blood pressure for now.  She continues to be reliant on Norepinephrine to help her keep a viable blood pressure.   Today's chest x-ray showed her lungs to be worse than yesterday.  Lexe continues to bleed from her lungs.  To minimize coughing and the chance of further lung irritation, Lexe has been put on a full time IV paralyzing her.  Lexe continues to fever at a high rate and is on a cooling blanket most of the time.  Being paralyzed helps Lexe not shiver as she cools.  Lexe has stopped responding to the drug they were giving her to reduce her fever.  When cooled down Lexe's heart rate drops which is a really good thing.  Lexe's heart continues to beat at a very high rate.

One big issue facing Lexe right now is fluid overload.  Her volume of fluid intake is outpacing her output.  This is causing fluid issues with the lungs and heart.  At present they are working on keeping her blood pressure up and giving her medication to help her process fluids.  It is a tough balancing act involving many different drug combinations.  At present Lexe has 10 different IV pumps working to deliver a wide spectrum of drug and blood products.

We are very hopeful that Lexe's kidneys will continue to be efficient.  They have been stressed over the  last several days.

We are praying for an uneventful night!!

Thank you for all the help you have given our family during this very stressful time.  We are especially grateful for the kind words and prayers that have been sent our way.  We are blessed to have so many people concerned for our family.

Monday, August 6, 2012

We are very sad to report that Lexe situation has continued to deteriorate.  This morning she was unable to breath on her own and was sedated and put on a breathing tube.  All of her breathing is now being done by a machine.  Lexe has been chemically paralyzed and put on a cooling pad to reduce her core temperature.  It appears that the bacteria is now having a negative effect on her lungs.  Lexe's heart functions are also not so great right now with a resting heart beat of around 115-125 beats per minute.  Her heart is working really hard right now and is enlarged with some fluid in her heart sack.  We have been told that Lexe is in critical/stable condition.  The nursing and physician staff in the ICU are great and are giving Lexe the best care in the world.

We as a family are very worried and are praying for her to catch a break!  It seems that the Intensive Care Unit will be our home for some time.  Please pray for Lexe we all need her in our lives for many years to come.

Sunday, August 5, 2012

Since the conclusion of Lexe's third round of chemo she had been doing very well up until Thursday night. Her blood pressure dropped to dangerously low levels and was accompanied by extremely high fevers, ranging from 103-107 degrees. Because of the low blood pressure, she was taken down to the Pediatric Intensive Care Unit. A blood culture confirmed that she had a bacterial infection in her blood and she was immediately put on antibiotics. The antibiotics are working and she is no longer septic, but has developed further complications including Acute Respiratory Distress Syndrome (ARDS). ARDS compromises the ability to breathe and it became very difficult for her to breathe last night. The decision was made this morning to put her on a BIPAP machine. The BIPAP forced air into lungs so that she can properly oxygenate. Lexe is expected to be in the PICU for several more days, during which they will try to get her breathing on her own. At this time we have to limit Lexe's visitors to immediate family only.  We are grateful for the fasting and prayers on our behalf. We love you all.