Maoli-Chan's Progress Reports

[Dr. T]

October 25, 2002

Maoli?fs condition has not shown any improvement. She has edema of her trunk and extremities that has slowly increased in spite of adequate urine output. She remains respirator dependent and if we are to see a miracle, I would think it would first be with her showing signs of spontaneous respirations. The edematous condition is ascribed to lack of control due to the intracranial tumors and associated effects.
Let us hope that tomorrow brings a positive change in her water balance and neurological status.


Dr. T

[Dr. T]

October 26

Aloha everyone,

Maoli continues to have a low platelet count, some abdominal ascites (fluid) but the interesting news is that the AFP level has dropped from the high value of 154,000 to a value of 9,000. One would hope this implies retardation and destruction of the intracranial tumors and that may be the case. Also, it may be possible that the tumors are showing no further growth. The key to her improving will be signs of spontaneous respiration.

I have only a few more first-hand reports to give as I will return to Hawaii on 10/29.

I hope your continued efforts are responsible for this decline in the tumor marker AFP.

Thank you!



Dr. T

[Dr. T]

October 28

My last report from Tokyo as I am leaving tomorrow. Koji will keep us posted. Today I saw a tremendous reduction in the edema about Maoli's face and neck. Her blood oxygen level had dropped and they were preparing to take a chest x-ray in order to track it down.
I must say that the nursing staff and the physicians have been first rate in taking care of little Maoli. Compared to my experience in American hospitals, I have reached the conclusion the care appears better in Japan. There is also much more respect and attention to the spiritual aspect of things. I think it would be good experience for more foreign doctors to see how things are done here. It took me some time to understand but with observation and time, I have reached the conclusion that things run smoothly here in the medical arena.

Maoli: Sure, even with the tremendous odds against her, she still has a chance. All of you know that quite well. Let's pray that things work out in the best possible manner for the higher selves of all involved with Maoli Kasai.

Aloha,



Dr. T

[Dr. T]

October 29, 2002

Yesterday's decrease in blood oxygen and chest x-ray results were signs of her lungs loosing remaing function.

I am sorry to say that Maoli chan peacefully left her physical body at 3 am EST today. The family is deeply appreciative of your concern and your devotion to her cause. She made a valiant effort to fight the rare disease of hepatoblastoma but succumbed to widespread intracranial metastasis.

In her memory, I would request that each of you take a moment to visit the new topic, "Maoli's Message." Your comments left here will be of great value to the family.
I will begin the topic with what I feel was delivered to me.

Again, many thanks to each of you.

Your involvement during the past six weeks has been a great comfort and in return, may your lives be peaceful and happy.

Please remember to post your comments in the new topic "Maoli's Message"

With head deeply bowed in respect for your time and energy,


Dr. T

[Robert Bruce]

G'day Folks!

I have chosen to use a new topic, locked, to make it easier for everyone to follow Maoli-chan's progress at a glance.

Take care, Robert.

-------------------------------------------

Following is the up to date report.  Please excuse the Jack/professional med speak:


September 15

Update on Maoli Kasai

Many of you have asked to be informed of this case and I hope what follows
will be of interest:

Thanks to all of Koji Kasai's concerned friends. Koji (Maoli-chan's father) is most appreciative of your efforts. This is the latest on little Maoli.

At age 6 months in Hawaii, Koji came to me saying "Jack san, can you take a look at Maoli? Her color is not good."

She had vomited one time that morning and when I looked at her, the only
difference that I saw is that she did not spontaneously smile as usual. As
far as her color, she looked normal to me but I felt that Koji knew best so
I called pediatrician Dr. Ruth Matsuura and she advised us to bring Maoli
directly to her office. There, she agreed that Maoli had a "shocky" look,
but blood pressure was just slightly below normal, but still, there appeared
to possibly be something wrong. She advised us to take to the Hilo Hospital
emergency room for evaluation and admission and lumbar puncture. All of this was done, x-rays, the spinal tap and blood cultures and blood studies. All were normal.

She was treated empirically for two days and on the third day, suddenly
returned to her normal cheerful self.

Koji and his wife Eriko, returned to Tokyo with Maoli. They took her as
planned for evaluation and at age 10 months for a 'well baby' check up. No
problems, no abdominal mass.

On her 1 yr birthday, October 21 last year, things began. Koji and Eriko
noticed a lump or swelling in her abdomen. By the next day, scans had been
done and a liver tumor was diagnosed and by the appearance on the scan, a
hepatoblastoma.

This is rare, incidence of 0.5 to 1 per million. Lung scan revealed
metastatic lesions thus making her a stage IV case. Even so, if her tumor
would respond to chemotherapy (decrease in size) then resection of the
hepatic and pulmonary lesions could give up to a 75% chance of a cure.

She had several chemotherapy sessions, the mother staying with her all of
the time and Koji only leaving for urgent matters. She became ill with
bleeding and loss of appetite but recovered as did her white count.

She then had surgery for resection of the liver lesions and the lung lesions
were no longer seen on CT scan. Her alphafetoprotein (blood marker for
tumor) decreased remarkably. As she recovered, the time came when the AFP increased and scans showed recurrence of the lung lesions in her left lung.  Further chemotherapy, bone marrow transplant and then, in late July, a
resection of 2/3 of her left lung.

She had it rough then, persistent bleeding from the chest tubes and being
supported by the heart-lung machine and heparin. She initially could make it
off the machine for 10 minutes but by August 13, the maximum was down to
five minutes.

At this point, most of you know the story. Many people were praying for
Maoli, many were doing at-a-distance healing, and I decided that this was an
important moment for materialization at a distance. But that is another
story, I will skip for now, but let me tell you what happened. A Qi Gong
sensei treated her, she was given Jorei two times and Koji called to say
that the doctors suddenly decided to insert another chest tube which
improved her numbers and they also recommended a repeat lung surgery to stop the bleeding. I felt it wise and Koji agreed. He kept in touch with me
hourly to report and surgery went well. The next day she was tried off the
heart-lung pump and managed 1/2 hour, then 1 hour, then 2 then the entire
day and from that point on, the pump (heart/lung) was no longer needed.

She was being slowly weaned from the respirator and doing well when on or about September10, a blood AFP level showed an increase to 1000ng/ml. Then a repeat two days later showed an increase to 1400 ng/ml. Just like before when the rise signaled a return of the pulmonary lesions, again Koji and Eriko were shocked in the face of seeming improvement. On September 12, Koji noticed that Maoli tended to use her right arm less (spontaneously) than her right. On September 13 she became densely right hemiparetic (paralysis of arm and leg) and that night, a neurosurgeon happened to be in the ICU seeing another patient. Koji ran the matter by him and he recommend an immediate CT. The liver, lung and brain were scanned.

Koji called me and sadly informed that the doctors had found the reason for
the increase in the AFP. He said that now Maoli had five (5) metastatic
lesions in her brain, one very large and it had bleed. He had been advised
to proceed with the trach as planned but then to move Maoli to a private
room where he and Eriko could spend quality time with her, as her days were now said to be severely numbered.

Koji is my friend, and like a son to me. I have never met a more pleasant
guy. He always said that he obtains pleasure from making others happy. Now, Koji appeared devastated by the news. He was asked to make the decision to move her from the ICU, be with her and perhaps, if she could not breathe on her own, discontinue respiratory support.

At this point I arranged to be at Koji's side, not by materialization, but
by 'immediate' travel to Japan. It was still hard to believe this could happen
to Koji, Maoli and Eriko after over 10 months of ups and downs and what
appeared to be a disease conquered. I discussed this with many people who
knew of the situation and I spoke with no one who had given up hope.
Something still appeared strange.

I arrived with My wife the evening of September 14 and that Sunday afternoon we went directly by trains to the hospital. Koji met us at the final station and kindly drove us the remaining few miles to the hospital. He reviewed the case saying that on Monday (today) the hospital would not be in full operation due to a Japanese holiday (elder's day, for me?) but the doctors wanted to meet with him to have his decision, the ok to move Maoli to a room where they could stay with her for the week or two (perhaps longer) that she had to live.

We arrived in the ICU and after dressing in caps, gowns, masks and shoe
covers, we went to the bedside. There I saw little Maoli for the first time
in over a year and I was quite surprised to find her alert, following and
focusing with her eyes, crying a bit (I am sure she did not remember me but
thought of us as new doctors about to puncture her skin or suction her
endotracheal tube. She had a dense right hemiparesis but no facial weakness. She had good left-sided movements. Without the tube, she appeared ready to talk if she could.

Two residents kindly met us to show me the scans. This is where it became
interesting. As you read what follows, the oncologist and neurosurgeon are
not to be criticized, in the long run they could be correct, but what I saw
was a brain CT done without contrast. Koji had thought it was a contrast
scan because prior to the scan they were asked to sign a consent for iodine
administration. (radioacive Iodine is normally injected to provide CT contrast).

The scan showed one large (for the child's brain) 3 to 4 cm left frontal
lesion, bright in signal intensity with a rim of surrounding edema. There
were three other smaller lesions, not contiguous but adjacent and one small
right frontal lesion. All were hyperintense meaning they were bright white
with the surrounding edema dark as expected. It had been explained to Koji
that the bright area of the large tumor was bleeding and the surrounding
dark area was the tumor.

Viewing the scan, my opinion differed. I saw no marking of "C+" which is, as
far as I know, the universal description of a contrast-enhanced CT scan.
Furthermore, there was no clear definition of the middle cerebral vessels or
the basilar and and posterior cerebral arteries that is normally seen with a
high-quality enhanced CT. Finally, no areas of choroid plexus could be seen
enhancing as would be expected on a contrast study. Therefore, I reasoned,
this scan must have been done without contrast and the hyperintense (white
areas) thought to be tumor were areas of hemorrhage. A 10/2001 head CT
without contrast was available for comparison and it was distinctly normal.

This was a key point. If it had indeed been a contrast CT, then it would be
unclear what portions were hemorrhage and what portions may represent
enhancing tumor. To scan for a potential brain problem would normally start
with a non-contrast scan. Koji, however, was under the distinct impression
that the scan was with contrast and therefore, there were 5 areas of
metastatic tumor. We were scheduled to meet with the oncologist and
neurosurgeon the next day (today, Monday at 2 pm)


Monday Meeting

The oncologist and neurosurgeon were very kind and  professional and came to the hospital on this holiday to discuss Maoli's situation. They patiently
listened to my explanation. This condition of hepatoblastoma was a first for
me, and for the oncologist, although his associate had trained in England in
several cases. His research revealed one prior case with mets to the brain in Japan and only one other case outside of Japan with brain metastatic
lesions. On top of the rarity of the hepatoblastoma, brain mets were much
more rare in such cases. This seemed to substantiate my point.

Of the cellular types of hepatoblastoma, is it of interest that the one Maoli had
was previously described in the literature by Kasai (no relation). Of all
the types, none are described as angioplastic or highly vascular. The liver
lesion is not bright on non-contrast CT thus confirming the suspicion that a
non-contrast CT would not be expected to show bright lesions without
contrast. After a long discussion, they agreed that it was highly probable
that the areas seen on CT were hemorrhagic in nature. It is agreed that
perhaps the largest could be a result of hemorrhage into a tumor but to have
five distinct lesions all bleeding at the same time, must be of astronomical
odds. It was agreed that the best bet is to repeat the non-contrast scan of
the brain at a period of a few days to two weeks. My suspicion is that the
small lesions will have nearly resolved and the largest will show partial
resolution. Maoli remains on steroids and prophylactic anticonvulsants and
will have the tracheotomy tomorrow morning.

Summary:

Little Maoli is not out of the woods with this, but certainly the prognosis
is not as dismal as I had expected. The combined efforts of all of you, and
various doctors such as Dr. Aoki, a neurosurgical friend in Japan, Maoli's
current physicians in an outstanding institution, the family support and the
efforts of the Qi Gong and Jorei practitioners, make make this a singular
case. Indeed, today she showed large gross movements of her right arm and leg, not just the minimal occasional finger movement that I noted yesterday.

Koji will be sending my friend, Robert Bruce, a current photo of her in the ICU that he will share with all of you.

Your efforts and concern and prayers and healing are deeply appreciated!

I will keep you posted. Let's continue to hope that Maoli takes a direct
path to recovery.

My best,

Jack



Addendum: For further info on this rare tumor, please see:

http://www.cancerprev.org/Journal/Issues/17/1/35/1272 on alphafetoprotein

and on hepatoblastoma

http://www.pedihepa.org/Liver%20tumours.htm

http://wwwpath.usuf2.usuhs.mil/Surg_Path/s96-02/96-2.html

and for cases that have shown miracles:


http://www.google.co.jp/search?hl=ja&inlang=ja&ie=Shift_JIS&q=hepatoblastoma+and+miracles&lr=


Peace,

JT