Monday, 09 June 2014
Ella tolerated today’s procedures well and is resting once again.
Thank you for your prayers. Amen
Author: MG
The Febrile Games Continue
Friday, 06 June 2014
04:30 HST Update: Ella continues to fight a fever – her energy and appearance improving over the last 12 hours. While alternating doses of Tylenol and Motrin lessen the severity of the fever, the underlying cause of the fever remains a mystery.
Yesterday afternoon, Ella felt well enough to have a bit of outside time with her sisters before dinner. Click on the photo above to see a album of yesterday’s photos.
We thank God for the generous and loving people who support Ella and our family each day. We are blessed by their generosity, kindness, and fellowship.
Thank you for your prayers and your willingness to make this journey with us. Amen
The Challenge of Treating Ella
Thursday, 05 June 2014
The past few days have been a bit perplexing. Ella has been a bit warmer than usual – hovering around 100 F; with spikes as high as 104.5F. Luckily, Tylenol and Motrin are working well to keep her fever in check. Thus far, Ella refuses to reveal a definitive cause for her heat wave.
What makes this truly perplexing are the numbers associated with her immune system — her ANC # is 4380. Her symptoms would make more sense if her ANC # was 438.
So, we wait, we watch, we pray.
Bottom line: this is a pretty good example of how treating Ella can be a real challenge.
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.
KMC Music Video Luminaries! Ella and Tucker
Monday, 02 June 2014
Just cause you’re having chemotherapy doesn’t mean you can’t have fun with a fellow video co-star. Tucker tried to explain that he had nothing to do with the amount of screen time he had in the video. We don’t think Ella was convinced.
We thank you Father for the gift of another day and invite you to send the Holy Spirit into our lives; We pray for all the people who are praying for Ella.
Thank you for your prayers.
KMC Music Video “Brave”
Thursday, 29 May 2014
Shortly after her arrival at Kapiolani Medical Center (KMC) for Women and Children in mid-April, Ella was asked to appear in a KMC music video. After consulting with her agent (Mum), an agreement was reached. Shortly thereafter, the KMC film crew began shooting in Ella’s hospital room.
Dear Lord, we praise you and thank you for the loving and supportive people you bring into our lives. We invite you into our hearts today and every day.
Amen!
Ella and Lou: Good Friends From Mass Reunited
Wednesday, 28 May 2014
Yesterday was a milestone day for Ella.
We are so very grateful for all the prayers and support we have received.
May God bless you each day. Amen
Ella’s Bone Marrow is Up and Running Strong
Tuesday, 27 May 2014
Breaking News 15:00 HST – Ella’s lumbar puncture was completed without any events. She is recovering in the PACU.
Breaking News 12:30 HST – Ella’s blood test results are great news. This means she is cleared to go to Phase II. She will get a new dose of chemo in her CNS via a lumbar puncture in a few minutes.
God is Good! Amen.
Ella Graduates to Good Health
Saturday, 24 May 2014
Ella’s shirt and “graduation present” are from her prayer family in Corning, New York.
Thank you Baba, Papap, and the children of All Saints Parish in Corning, New York.
If you are from Corning, please leave a comment with your name so Ella can get to know you better.
Ella slept really well overnight – her color is rosy. She is truly rested and almost seems like her old self!
Some of Ella’s small scratches are beginning to heal – a strong indicator her immune system is recovering.
Praise God!
Ella helping Lucy
Thursday, 22 May 2014
Getting up and being active is the best medicine of all. This will happen naturally, as Ella’s sisters are out of school for Summer break.
We thank God for this day; for the opportunity to love our children another day.
We invite God into our lives; to share our joys and sorrows.
We ask God to guide our steps today and every day.
Amen
Many times each day, we pray for you – the people who are praying for Ella.
Thank you for your prayers.
The Slumber Games at Home
Wednesday, 21 May 2014
After a bit of a rough start Ella settled in and managed to bank a few solid hours of sleep. It remains to be determined if the same will hold true for “Team Ella”.
Dear God, Thank you for this day.
Thank you for letting us bring wee Ella home from the hospital.
Thank you for the many joys of parenting;
Thank you for our trials – may they bring greater glory to God
We invite you into our lives, and ask you to send the Holy Spirit to guide our steps each day – so that we may be the people you want us to be.
In the name of the Father, and the Son, and the Holy Spirit, Amen
We pray for all the people who are praying for Ella.
Thank you for your prayers.
Pit Stop to See Molly Mop
Wednesday, 21 May 2014
On the way home from the hospital Ella had to see her friend Molly.
We thank God for the gift of another day and invite him to send the Holy Spirit into our lives; We pray for all the people who are praying for Ella.
Thank you for your prayers.
The Slumber Games
Tuesday, 20 May 2014
Today is Ella’s fifth day in the hospital. Slowly but surely we are beginning to understand how the chemotherapy is effecting Ella’s fragile respiratory system.
Ella has an airway condition called tracheomalacia. This means her airway lacks the rigidity to remain open all the time (visualize a vacuum cleaner hose without the spiral wire on the outside).
When Ella is awake, her normal muscle tone keeps her airway open. However, when she sleeps, her body relaxes to the point that her airway collapses on to itself.
Visualize something like severe sleep apnea. Ella asleep, trying to breathe but nothing happens – other than her chest retracting and her gasping for air… what we call “The Slumber Games”. It SUCKS and the odds are never in your favor.
Ella’s solution is to sleep in a sitting prone (face down) position with her face turned to the left and chin up. (Photos above)
Unfortunately, there is not a magic bullet solution. This condition will likely diminish as Ella regains her strength. Prior to chemotherapy, Ella’s sleep was care free.
On the Leukemia front; Ella is responding well. Results from last Monday’s bone marrow sample showed that Ella successfully completed the first phase of her treatment and that her profile is “standard risk”. This means her long term prospects are very good!
We thank God for the gift of another day and invite him to send the Holy Spirit into our lives; We pray for all the people who are praying for Ella.
Thank you for your prayers.
Today’s Living Rosary in Corning, New York
Fourth Visit to Hospital this Week
Saturday, 17 May 2014
Ella waiting for chest X-Ray at 03:00 this morning.
This continues to be a tough week – Ella’s delicate respiratory system is under increased load. Visits to the KMC Emergency Room (ER) on Thursday and Friday night were made to ensure Ella’s safety and comfort. Early on Saturday morning, she was readmitted to the Wilcox Oncology Ward at KMC. Ella appears to be responding reasonably well to treatment thus far. Please pray for her.
We are so very thankful for Nurse Donna Yiu for her tireless support of Ella and the family. Her efforts have enabled “Team Ella” to “fight the good fight” every day. Donna, you are truly a loyal friend and talented Nurse – God Bless You!
Please pray for Donna and all of Ella’s caregivers.
We thank God for the gift of another day and invite him to send the Holy Spirit into our lives; We pray for all the people who are praying for Ella.
Thank you for your prayers.
Unexpected Return to Hospital…a bit SCARY
Wednesday, 14 May 2014
Ella was readmitted to Kapiolani Medical Center late Tuesday afternoon. Earlier in the day, Mum detected a combination of subtle signs that pointed to probable instability. After an hour of close monitoring, the doctors agreed Ella should spend the night in hospital. Blood tests later revealed Ella’s hemoglobin count dipped a bit too low. Ella really perked up after receiving a blood transfusion on Wednesday afternoon.
We are so grateful to the donors who give to the Blood Bank of Hawaii – Mahalo Nui Loa! We urge friends of Ella to Donate Blood Today.
We thank God for the gift of another day and invite him to send the Holy Spirit into our lives; We pray for blood donors who support children like Ella.
We pray for all the people who are praying for Ella.
Thank you for your prayers.