2022
Papa turned 54 years old this year.
We decided to make him a Happy Birthday Video
I am so greatly blessed…
Amazing Grace, how sweet the sound,
That saved a wretch like me.
I once was lost but now am found,
Was blind, but now I see.
Amen! Alleluia!
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!
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
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’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!
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.
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.
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.
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.
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.
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.
It is amazing what a good night’s sleep can do. Ella slept well for about 10 hours last night. When she woke, it was like Pre-Chemo Ella (PC Ella) had returned. After an hour, her energy level dipped and she went back to sleep again. All of her vital signs are normal – she is just a sleepy mouse.
Today’s prayers of thanks to God for the gift of another day seemed very special.
Yesterday was a hard day – with many opportunities for problems.
We pray for God to be with the doctors and nurses who care for children like Ella.
We pray for all the people who are praying for Ella.
Thank you for your prayers.
All of today’s procedures (listed below) were completed without incident:
Access Porta Cath
Blood Sample for Complete Blood Count (CBC)
General Anesthesia (Propofol)
Access Central Nervous System (CNS) via a Lumbar Puncture (LP)
Sample Cerebrospinal fluid (CSF)
Infuse chemotherapy drug Methotrexate into CNS
Bone Marrow Biopsy from Pelvis
Today’s procedures were successfully completed by:
13:00 HST / 7:00 PM Corning, NY / 8:00 PM Halifax, NS / 23:00 GMT
15:00 HST Update: Back home safely. Ella was incredibly brave. Today is day 29 of the 35 day the “Induction” phase of Ella’s 30 month treatment protocol. For those of you who are keeping score: this will be the 3rd lumbar puncture and 2nd bone marrow biopsy since 08 April, 2014.
DNA analysis of the leukemia cells present in today’s bone marrow sample will determine Ella’s long-term risk profile: High, Standard, or Low; and her specific treatment protocol.
We hope to recieve the results later this week.
The DNA analysis is performed on the mainland.
Pictured above are Nurse Irvin and Ella at North Beach,
Kaneohe Marine Corps Base Hawaii. “Semper Fi”
We say prayers of thanks to God each morning for the gift of another day.
We pray for all the people who are praying for Ella.
Thank you for your prayers.
Monday, 12 May 2014
Ella awake and eating vanilla ice cream following her procedures.
Great Job Ella!
