Month: April 2014

Unconditional Love

Wednesday, 30 April 2014

Each morning we thank God for gift of another day and invite him to send the Holy Spirit into our lives; to strengthen our faith and to guide our steps. Please join us in this daily routine. We thank you for your prayers for Ella.

Ella loves Ki’ele and Ki’ele loves Ella. Our neighbors kindly sent a big poster of Ki’ele, their Yellow Lab, to brighten Ella’s hospital room.

Today was a bit of a tough day; the chemo drugs – like a heavy backpack – tax Ella’s spirit.

Ella’s Reunion today with Ki’ele was a high-point that reminds us of brighter days to come.

Monday Means Chemo (Day 15)

Monday, 28 April 2014

Today was Ella’s second visit to the Pediatric Ambulatory Unit (PAU) at Kapiolani Medical Center (KMC). Ella’s familiarity with the PAU helped things go a bit more smoothly. The PAU is where outpatients, like Ella, go to receive their chemotherapy protocols

Ella’s two newest friends – Nurse Cindy and Nurse Kristen – painlessly reestablished IV access via the Porta Cath. A short time later, Ella recieved another dose of Vincristine.

We were pleased to report that the past week had been gloriously uneventful. No fevers, no bruising, no bleeding. Thankfully, boring is great news

We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

Team Ella Succeeds

Sunday, 27 April 2014

St. Baldrick’s Images

Ella is doing well – strong appetite and attitude.

Thank you to everyone who supported Team Ella. We raised a bunch of money for a very good cause. Proper “thank you” notes will be on their way shortly. Click the link above to see photos from today’s St. Baldrick’s fundraiser.

We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

Monday Means Chemo (Day 08)

Monday, 21 April 2014

Ella, sporting her new pixie hairdoo, began her second week of Chemotherapy on Monday, 21 April.

The “Day 8” treatment calls for two procedures. The first involves a lumbar puncture to draw a sample of Ella’s spinal fluid and to inject Chemotherapy drugs into her Central Nervous System (CNS). Because of Ella’s airway issues, her sedation was performed by the same anesthesiologist who took care of her in the OR during last Monday’s surgery. The extra effort resulted in a procedure that was blissfully uneventful.

The second procedure involved accessing Ella’s Porta Cath site to draw blood and infuse the Chemotherapy drug, Vinchristine.

We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

Headed Home on Good Friday

Friday, 18 April 2014

By Good Friday, Ella’s vital signs were almost back to their normal baseline. Her O2 sats on room air were in the high 90’s. Her lungs were clear and there was not even a trace of blood in her trach secretions.

With her “week one” chemo treatments complete and her vital signs were stable, the doctors agreed Ella should be at home for Easter weekend.

However, before letting Ella depart Kapiolani Medical Center (KMC), the doctors gave Ella one more unit of platelets – just to “top off the tank” better safe than sorry.

Ella was delighted to be home again.

We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

48 Short Hours

Wednesday, 16 April 2014

The doctors explained the chemotherapy drugs kill the Leukemia cells by literal destroying the walls of each cell. The down side is that this wholesale release of intra-cellular material can dramatically (and dangerously in many cases) alter the normal blood chemistry.

IV fluids are increased as part of the process to dampen the rate of change. In Ella’s case, the combination of additional fluids, (which built up in her lungs) and the reduced number of red blood cells impeded her ability to process oxygen. With Ella, low oxygen saturation numbers are almost as exciting as blood shooting out of her trach tube. Eventually, additional drugs (lasix) were then given to accelerate urine output.

*** Advisory note to Donna – probably not the best time to hold Ella on your lap ***

And so, 48 short hours after the coughing blood began – Ella was stable enough on Holy Thursday that she only needed 3 or 4 LPM of oxygen to keep her O2 saturation numbers in the 90’s.

We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

The Fighter Returns

Tuesday, 15 April 2014

When we think of the world’s greatest fighters names like “Ali” and “Sugar Ray” come to mind. To that list, the name “Ella” should be carved in stone.
From 02:30 to 05:00 on the 15th, Ella coughed blood through her trach tube.

Throughout the 150 minute ordeal (equal to 50 three minute rounds without a break), Ella maintained her composure as she struggled to catch her breath. Wave after wave of coughing spasms wracked her torso like repeated body blows. Each time more and more blood shot forth from her trach. And each time her oxygen levels dipped lower on the rhythmically beeping monitors. And the only time she show the slightest sign of faltering was when one of her biggest coughs covered the lower half of her bed with bright red blood spatters.
Mercifully, the coughs diminished and Ella was able to fall asleep.
This respite was all too brief, as Ella’s next opponent, “Chemo Side Effects”, would begin to challenge her in just a few hours.
We start each morning with prayers of thanks to God for another day and for all the people who are praying for Ella.

Thank you for your prayers.

Patient Safety Warning:

We later determined that Ella had been over hydrated to the point where her lungs were beginning to fail.  This situation was incredibly dangerous and should have been avoided.  Physicians want patients to be very well hydrated prior to the initial dose of chemotherapy, but this is what happens when intravenous hydration goes way too far.  Doctors and nurses are not Gods – parents need to monitor their children’s condition closely and sound the alarm at the FIRST SIGNS OF DANGER.  Parents, listen to your gut instincts…it is usually right.

Patient Safety Warning added 24 Aug 2016

Ella Two Hours Post-Op (Day 01)

Monday, 14 April 2014

Ella had her first surgery today. Surgeons successfully placed a central line “port” for long term access to Ella’s circulatory system. YEAH!!! No more painful & traumatic “sticks” to get IV access.

The really good news was that Ella’s spinal fluid tested free of leukemia cells.

And just two hours after surgery, Ella was out exploring the hospital. Later still, she had her first chemo treatments – all were well tolerated. We start each morning with prayers of thanks to God for another day and all the people who are praying for Ella.

Thank you for your prayers.

Ella’s Morning Prayers

Saturday, 12 April 2014

Good Morning, Jesus Thank You, Lord, for the precious gift You have given me, my life, to live fully and joyfully one more day.

Give me the grace to see beyond the world’s appearance so I may encounter Your holy presence in each person I meet.

Ella was safely delivered via ambulance yesterday afternoon to Kapiolani Medical Center for Women and Children.

She is under the care of a fine pediatric oncology team. The team is led by Dr. Glaser – his daughters also attend Sacred Hearts Academy. I met him yesterday and am so pleased he will be leading our team.

We start each morning with the morning prayer above:

Thank you for your prayers.