Maoli-Chan's Progress Reports

[Dr. T]

September 17 Update on Maoli

Today Maoli had a successful tracheotomy and returned from surgery this morning, alert and much more relaxed than when the tube was in her nose.
Now perhaps the reason I am involved at all, is to see if indeed a miracle exists for Maoli. After her CT of 9/13, the physicians were divided into two camps as explained below:

1.) Those who felt that the non-enhanced CT represented 5 areas of tumor, based upon the fact that the rise in the tumor marker, AFP, had to be explained and the five lesions, even though bright on non-enhanced scan, fit the most likely diagnosis of metastatatic disease. This seems to be confirmed by one neuroradiologic physician and recent acquaintance of mine who concludes that to base the appearance of a metastatic brain lesion, based on the radiographic appearance of the primary (i.e. the hepatic lesion enhanced with contrast), is fraught with error, as there are physiologic changes that can cause such lesions to scan brightly without contrast.
2.) There is a second group of consulting physicians that feel that the non-contrast scan could be misleading, as areas of hemorrhage could be confusing the picture. Maoli was treated with heparin while on the heart-lung machine, and that carries a risk of bleeding elsewhere in the body (including the brain). It was felt that a repeat scan would help to determine if some of the areas represented bleeding while the large left frontal lesion may indeed be tumor with or without hemorrhage.
3.) My feeling was that there were areas of bleeding and that tumor could not be ruled out in the small deeper lesion and the large left frontal lesion. I based my reasoning on past experience but not with this particular tumor. It is new to almost all involved and the oncologist could find only one previously reported case of brain mets in the Japanese literature, and one case reported outside of Japan.
4.) A discuss was held on what to do if the areas turned out to be tumor rather than hemorrhage. It is possible to remove the accessible left frontal lesion by working carefully within the tumor but being in the dominant (left) hemisphere, there is a risk to critical areas of speech and motor power to the right arm and leg. The right extremities are affected and speech cannot be determined at the present time. The small right frontal lesion is near the surface and amenable to surgery. The tumor beds (remaining after surgery) and the small deeper lesions may be candidates for focused-beam radiotherapy (the Gamma Knife).
5.) New lesions could be found on repeat CT scanning and if so, further treatment may be contraindicated.

The consensus at this time is to repeat the CT and note the appearance of the areas in question. A new lesion will certainly implicate tumor but a decrease will certainly suggest hemorrhage. That scan will be done in the next few days. The chairman of the department of pediatric neurosurgery will consult. He is a neurosurgeon of known repute and if he feels that these lesions represent tumor, he will give his opinion on the possibility of surgery and/or radiotherapy.

If there is to be a miracle in this case, the next few days are vital to Maoli to make this happen. Will the combined efforts of many affect the situation? We certainly hope so.
The odds were against her when she became one of one million births per year to be affected with hepatoblastoma and the rising AFP, currently ascribed to the appearance of the five suspicious areas in the brain are again odds against her survival. If some of the areas could possibly be hemorrhagic and not tumor, that will be great fortune for Maoli. If not, could surgical or radiotherapy play a role? These are the unanswered questions at this point.

We thank all of you for you concern and assistance in this matter. I will keep you posted as developments occur. The father reports that she is very comfortable, alert and watching television with interest. Pictures will be posted soon.

With best regards,
Dr. T

[Dr. T]

September 18 Update  -  Exit point?

Hello friends,

The CT was done today with and without the iodine (contrast). It confirms why the AFP in her blood is going up and shows that some of the 5 areas were bleeding only, some were bleeding into a tumor. The large area that we suspected was a tumor, shows that with iodine, parts increase in brightness as would be expected from a tumor but the important man, Dr. Ooi, consulted on her and agreed that the blood may be covering up what is a very small tumor. Time will tell. If she can hang in, perhaps the repeat scan in several days will show a clearer picture.

It is tough as everyone agrees, even Koji, that chemotherapy has not been effective against the brain problems as the agent cannot easily enter the brain due to natural mechanisms that we all have (blood-brain barrier it is called).

In the next 2 to 3 weeks, the situation will be very clear. Either Maoli will show signs of healing due to her will to live and the combined efforts of all who are in her corner and sending prayers/healing energy to her. If not, perhaps it is her decision to move on as her plan cannot be completed due to this rare event, the hepatoblastoma with metastases to the lung and brain.

The professor and chairman of pediatric neurosurgery also researched the literature and like me, he could find only two reported cases of spread to the brain and in each case, it was one lesion. Maoli may be a distinct first, to have two and perhaps three brain lesions. The right frontal lesion appears to be, as suspected, an area of hemorrhage only. Even so, tumor may be hidden and microscopic in nature.

Koji, although difficult to accept, has always thought that it is Maoli who will make the decision to stay or to leave. The next two weeks are most critical. Either she will survive or begin to deteriorate. She is very alert, able to wave "Hi" and even motion that I should take one of her candy suckers. She remains hemiparetic on the right but shows occasional spontaneous arm and leg movements. There is no facial weakness and even though the tube makes any vocalization difficult at best, she is able to voice "ma ma" meaning that at this point, her speech centers may be intact.

If she will elect to take what is known as an "exit point" remains to be seen. It is my feeling that this is an addition to the five known exit points that we each choose before birth on this planet. It may be a necessary addition for such rare events. How did this happen? An aberrant cosmic ray upsetting her genetic structure? I have no idea. As mentioned above, she may be the only known case of a hepatoblastoma patient having more than one metastatic lesion to the brain. In that case, and if Eastern and Western medicine cannot offer her a reasonable chance of survival without severe deficit, then it stands to reason that an exit point may be offered to her.

The next two to three weeks are important as the plan will show clearly which direction Maoli is headed.

My best to all,

Dr. T

[Dr. T]

September 19 report on Maoli chan:

It is important to for you to know several interesting things that I observed about Maoli today. First, either by the Jorei I gave and/or the intravenous medication to relax her a bit (so that she won't pick at her tracheal tube, she was very calm and happy. She began to smile today. Several nurses visited her that knew her from another floor, and when the mother (Eriko) asked "who is so-and-so (name) she would quickly point to the correct nurse. Maoli could now suck on the type of candy sucker that she offered to me yesterday. She is still able to play "jan-kan-po" with her left hand, a game we know as "scissors-paper-stone" and would watch her TV VCR cartoons and often point to direct my attention to something on the screen. When she locks eyes with me, it reminds me of the time my daughter at age 1 year had swallowed a nickel. I was able to meet her in the OR prior to the endoscopic extraction and that look in her eyes was the same, as if to say, "I'm going to make it!"

The good news is, that during my visit, Koji received a call from the pediatricians saying that the radiation specialist had called to say that technically speaking, they could offer focused-beam radiation to the brain lesion(s) if indicated.

Tomorrow, Koji and I meet with a group of Jorei practitioners from the Tokyo MOA center to review the CT and focus in on the key points as per Mokichi Okada. Koji may receive his 0-hikari which will enable him to administer Jorei to Maoli as much as possible. The Qi Gong sensei will return tomorrow also.

With the energy directed to Maoli from all of you and from the family, the doctors may witness something very special. If Maoli survives or passes on, this will have left an important mark upon them. Maoli is simply the messenger for all concerned.

Koji will post the new pictures from today very soon, and you will see.

Aloha for now,

Dr. T


Jack

[Dr. T]

September 20

Aloha everyone!

Maoli had an interesting day, beginning with a mucus plug in her lungs that shot her pulse up to 180 beats/minute, pCO2 up to 60 and pO2 down. These numbers indicate that she was not properly oxygenating her blood. Her team was quick to jump on the problem and by bronchoscopy (using a flexible scope) the mucus plug was promptly removed and things returned to normal.

Her doctors are now considering a few chemotherapy options to treat the brain lesion(s) and they are very cooperative in working with physicians at the Cleveland Clinic Foundation. They  have done an extensive literature search to gather as much information as possible regarding this rare problem. Everything is being handled in a most professional manner.

A decision on the proper agent will be made in the next few hours. Maoli is getting the best of a blend of Eastern and Western medicine and Koji will obtain his o-hikari and begin to give Jorei to his daughter to supplement that which is provided by the Jorei Experts of the Tokyo MOA, the Qi Gong by the sensei, the Chinese herbal medicine, the chemotherapy, steroids, anticonvulsants, nasogastric alimentation and the tremendous healing power coming from all of you concerned friends. This is the best of all possible worlds for Maoli.

I will keep you posted!

So far, Maoli is hanging tough!

My best,

Dr. T



Jack

[Dr. T]

September 21

Hello all!

Maoli is doing well, very alert, able to operate some of the vcr controls. She will begin her chemotherapy on Tuesday with a low dose of what is called Etoposide. The doctor on the mainland concurred with their suggestion of using this daily for three weeks and repeating every 4 weeks as necessary. It has a low incidence of side effects and should be well tolerated. It is effictive against hepatoblastoma and she has had it before at a different dose and by iv. Her doctor found a fairly recent paper on using the low-dose therapy orally for cases of central nervous system tumors. Her platelet count was somewhat low for the second time, and she will receive another platelet transfusion today.
She was pleased to again have many visitors today which included the daily visits of both mother-in-laws whose presense makes her very happy. Her parents remain the concerned and caring parents that she choose.

She is hanging in. To me, she looked very good today!

JT


Jack

[Dr. T]

September 22

Update on Maoli Kasai

Hello everyone!

Today Maoli looked very good, so sweet in repose when napping and when awake, alert and happy. She had good reasons:

This morning she enjoyed ice cream. She did not want to stop.

Her respirator settings were adjusted to let her breathe on her own, without the respirator working against her.

At the mother Eriko's suggestion, she has started on intravenous Etoposide (the chemotherapy agent that worked before on her hepatoblastoma) while the hospital committee obtains approval to try oral Etoposide (which will reach a good blood level with minimal side effects) to begin on Tuesday.

Koji notice some movement in her right arm when he used Qi Gong as taught by his sensei. This may be a sign of function beginning to return.

Her progress has been good this week, no signs of deterioration in her condition.

The next significant milestone is for her to regain movement in her right arm and leg.

You have our continued thanks for your kind efforts to direct healing to Maoli. Koji has new pics to post very soon for you!

Again, with heartfelt thanks,

JT and the Kasai family

[Dr. T]

Update on Maoli Kasai
September 24

Maoli was afebrile today. Her doctor returned from a pediatric oncology conference today. He was the most knowledgeable about hepatoblastoma in Japan. He had a previous case of multiple metastasis to the brain which was treated effectively. He agreed with the present plan of using low-dose Etoposide which began today. If Maoli can be weaned off the respirator, then he feels that she may be a candidate for a strong dose of massive chemotherapy. For now, we will be hopeful that the oral chemotherapy agent (Etoposide) will be effective in reducing the size of the intracranial lesion(s).

Maoli remains alert, playing with toys and watching videos, even though she cannot verbalize due to the trach. Koji as added a mixture of organic mushrooms (Chinese medical treatment) to the other Chinese herbs and also, is giving the baby Jorei. He will soon be sending picture not only of Maoli, but of himself and his wife as I have informed him that many are directing healing energy to the parents as well as little Maoli.

The doctors seem to have renewed vigor in looking and searching for whatever is possible for Maoli. This, and the fact that the hospital is top notch, really gives Maoli the best of all possible chances. And  it is important to remember, that she indeed made a wise choice for parents. A more devoted couple could not be found. It is their love that keeps the baby together.

Thank you,

Dr.T

[Dr. T]

September 26

Friends of Maoli, Koji and Eriko:

I just spoke with Koji, the fever Maoli experienced yesterday is much better as is her diarrhea. A blood level of C-reactive protein (an indicator of infection) is minimal. She is stable and neurologically unchanged. She will have a visit from her Hilo Grandmother, Evonne, tomorrow. This will brighten things considerably for the Kasai family.

We may not know much more about her medical condition until a repat CT scan and a repeat AFP blood level are performed.

More pics of Maoli and family to come soon!

It is remarkable how this little girl fights daily to overcome the odds. Thanks for your continued support.


Dr. T

[Dr. T]

Note on location:

Again, for those who may wish to send a note or for aid in directing your healing, Maoli is located exactly here:

Jikei-Idai General Hospital
3-25-8
Nishi-Shimbashi, Minato-ku
Tokyo, Japan

Building E, 2nd floor, Room #5203.

It is interesting that "Idai" stands for University Hospital and the word Jikei means "to cure with love."

Thank you,

Dr. T

[Dr. T]

September 27

Maoli was less alert over the past two days and the AFP level has continued to double. It may indicate a breakdown of the tumor(s) but may also be indicative of tumor growth. A repeat scan is scheduled for the time when the level stabilizes or hopefully decreases.

On the bright side, her Hilo "Grandmother" arrived to give her support.

For now, the next hope is for the AFP level to decrease. Her parents are handling the situation as best as they can but the situation is tenuous right now. I will keep you informed and thanks for your continued support of Maoli's battle against cancer.

I will write again soon!


Dr. T

[Dr. T]

September 29

Maoli has had a decreased level of consciousness in so far as she is sleeping more than before. She has had temperature elevations that are being treated and transfusions for low Hb and platelet counts. There will be another draw for AFP level later this week. The decision on scan timing will be based upon the AFP results. She is now in a private room rather than the intensive care step-down unit but the nurses are as attentive and professional as before. The ancillary personnel are impressive.


Dr. T

[Dr. T]

September 29
1400 hrs

Amazing change in Maoli's condition. Parents report that she is very alert now; eating chocolate yogurt bars with great pleasure, showing normal movements of her right arm/leg as before and basically back to her prior status. The decreasing level of consciousness seems to have reversed. It is quite true that her Hilo Grandmother Evonne came to Japan with the spirit given to her by members of her Pentecostal church. Also, those of you who have been reading these posts and have directed positive energy to Maoli can share in this turn of events.
I will keep you posted.



Dr. T

[Dr. T]

October 1

Maoli has been back to normal (same status as she presented to us over two weeks ago. She is waving, pointing and alert. Strange, her level of consciousness decreased for two days, last Wednesday and Thursday and perhaps in someway related to her low hemoglobin count and platelet count which required transfusions.

AFP blood level has been sent the lab and should be back in the next couple of days and will be helpful, perhaps, for prognosis.

Thank you again for your continued concern and help with Maoli. Her father Koji will soon post a picture of her with a beautiful kimono presented to her for her birthday (which will be October 21). I continue to feel that we may be able to follow her case and see a true miracle in progress.



Dr. T

[Dr. T]

October 3

Hanging in tightly!

The AFB count has increased to 113,000 units but her neurologic condition is unchanged from September 15th. Thus, the increasing AFB is thought to be possibly due to tumor breakdown, rather than tumor increase.

Your continued efforts are  playing a major role in her possible chance to defeat cancer.

Thank you!!!

I will continue to post updates on Maoli.







Dr. T

[Dr. T]

October 5

Maoli is on two antibiotics now for pneumonia but she should recover as it affects her partially-resected right lung and appears as a moderate spot on the chest x-ray. It explains her temperature swings that were observed over the past few days. The oral chemotherapy has been temporarily stopped to allow her to recover. Irwin was quite correct in saying that she is in need of sleep.

We will continue to see her and update you as indicated. I expect the next big hurdle is in two weeks when thoughts will be directed to removing the tracheotomy tube.

Again, we thank you for your assistance and concern.



Dr. T

[Dr. T]

Hello everyone,

October 7 Progress Report on Maoli chan:

Maoli appears exhausted, she sleeps most of the day. Her temperature is down as is her WBC (white blood count) to a value of 9,000. The small area of her right lung is unchanged and most probably represents the region of pneumonia, unchanged on x-ray but not great in extent.

The marker for infection, CRP (C-reactive protein) peaked at 27 and now is declining. Her combination antibiotic therapy appears to be working.

When she does awake, she appears responsive as before. She must conquer the pneumonia now, then try to tolerate elimination of the tracheostomy tube prior to any thoughts of intravenous chemotherapy. The next few days will be crucial.

Thank you for your continued efforts, I will keep you posted!





Dr. T

[Dr. T]

October 8

I am pleased to report that Maoli's WBC count has increased to 1300 and the CRP has decreased to 6. Her temperature is near normal.

By this time tomorrow, her AFP (the blood marker for tumor) result from Monday's draw should be back. If it is unchanged or lower than before, a brain CT will be done. If it is increased from the previous level, it may be assumed that the tumor growth is increasing and the scan will be postponed.
She slept through the day today, but when awake, she appeared alert.

The important AFP result and furthers plans will be known tomorrow.

Thank you,



Dr. T

[Dr. T]

October 9, 2002

First, let me again thank all of you for following Maoli's case and for your healing efforts.

A glimmer of hope today – the AFP level was 150,000 units, up only 39,000 units in the past week. Prior to this it had been doubling or tripling with each blood sample. This may indicate that the oral chemotherapy held the tumor(s) at bay. It is expected that a CT scan of the brain will be done to determine the status of the lesions and if any neurosurgical treatment can be offered.

In spite of blood and platelet transfusions, her counts remain below normal, her temperature continues to fluxuate.

We are in hopes that this tenuous situation will continue to show signs of a reversal and of healing.

Many thanks,



Dr. T

[Dr. T]

October 10, 2002
                                       Penultimate post

In spite of a moderate increase in AFB, the reason for her drowsiness and semi coma has been revealed on this morning?fs CT scan. The left sided-lesion, which was the largest of the 5 has increased in size and caused a considerable amount of left-to-right shift of the midline brain structures. Additional lesions can now be seen within the brain and what was hoped to be a right-frontal hemorrhage now appears to be tumor.

Koji and Eriko realize that it is important now to keep Maoli comfortable and indeed, she does not appear to be physically suffering. To this end, the Decadron (steroid) has been increased to relieve the intracranial pressure a bit. Yesterday afternoon, a bradycardia (decrease in heart rate) was a sign of brainstem compression, which is confirmed by today?fs CT scan.

The parents understand that the doctors, friends, family and new friends via this forum, have done all that could have been done to aid Maoli in her battle against the rare but formidable hepatoblastoma. I am certain that Maoli thanks you too; I have seen that transmitted when gazing into her eyes.

In looking back over the entire situation, the thoughts of Maoli being a messenger and, as some have suggested in this forum, that she must be quite an advanced soul to have affected so many visitors to the Healing Place and inspire such tremendous compassion, an appropriate thought appeared this morning. Perhaps you will see the connection of Shozan?fs Phrase with Maoli?fs recent illness and perhaps the message she came to deliver:

                                           Shozan's Phrase

A monk once asked Shozan, "Is there any phrase that is neither right nor wrong?"

Shozan answered, "A piece of white cloud does not show any ugliness."




Many thanks to all for the aloha you have shown for Maoli!

I think it is always important to keep hope alive.






Dr. T

[Dr. T]

October 11

Maoli: The child is in a comfortable coma today.

Parents: Appear to have a good grasp of the situation and are doing well, in spite of the heaviness of the situation. They see the spiritual aspect of their daughter's illness and in her eventual departure from this plane of existance.





Dr. T

[Dr. T]

October 14

Maoli remains in what appears to be a painless coma.
The parents have elected to continue the respirator, anticonvulsant medication and, to combat the increased intracranial pressure, the steroids.
This leaves a chance for the Chinese herbal therapy, Jorei, Qi Gong and the at-a-distance healing that all of you constantly direct to Maoli, to take effect.

Other than cardiac rate and temperature swings, the past two days have been stable.

Thank you for your continued watchfulness and hope!


Dr. T

[Dr. T]

October 18

Update on Maoli:

What I had thought would be the end of posts turned out not to be the case. Maoli has remained in what I have termed a "peaceful coma." It is the first time I have used that term "peaceful" to describe a patient in a comatose condition. The pictues do not do justice to the actual situation. She is beautiful and utterly calm in repose. There have been a few signs of increased intracranial pressure such as the BP and pulse variations, but no drastic and sudden turns. The doctors, nurses and parents are professional and attentive as usual.Perhaps we have more time to work on a miracle than I had previously thought.

Can it be that Sapien's comments (see Ongoing pics. . .) will ring true?

"When doctors have done all they can, distance healing - by whatever means - has a clear field.

Also, coma can be nature's way of getting a strong unit of conscousness (jiva) temporarily out of the way so it, nature, can have an unobstructed crack at a cure."

This is why we all are involved, to see such an event take place, and your continued support to this end is greatly appreciated.

I will keep you posted.





Dr. T

[Dr. T]

October 19, 2002
Maoli?fs condition has changed very little. She spent most of the day seated in a chair, still peacefully comatose. A drop in her hemoglobin level required additional blood transfusion today. She is afebrile but the CRP (C-reactive protein) level is increased. At this point, it can only be ascribed to something going on intracranially. I remain amazed as her BP, although on the low side, has not shown the increase (along with pulse decrease) that would be expected with high intracranial pressure and brain herniation.
Could it be that all of the positive healing energy is allowing her to hold fast and allowing alternative medicine to work on the tumor problem? I hope so. Her birthday is on Monday; please direct as much healing energy as you can to her between now and then. I remain hopeful!




Dr. T

[Dr. T]

October 21, 2002
Special Report

Today is Maoli?fs birthday marking one year exactly the date the tumor was discovered. The AFP level drawn this week returned. It shows a decrease when compared to previous constantly increasing levels. She has not been on the chemotherapy but has continued to receive your healing, Qi Gong and Chinese herbal medicine. Although she remains in a coma, let us hope this decline in AFP is indicative of some positive change in the intracranial lesions.

Please focus your best today, Maoli-chan?fs birthday!

Thank you,



Dr. T

[Dr. T]

October 23, 2002  
8:30 PM Tokyo

Sorry for the lack of updates but I have been away from Tokyo for three days. I have been in phone contact with Koji and Eriko and there is no change other than for the past two days her platelet count has been down and after repeated transfusions is starting to climb. She shows no signs of bleeding intracranially or elsewhere. Her physicians think it is related to some type of intracranial mechanism that is preventing bleeding. I have no clue. Maoli remains in coma but for all outward appearances she appears to be in a deep sleep with respirator assistance. Your healing efforts are greatly appreciated. We are all hoping for a positive outcome for Maoli. I will definitely keep you updated during the next week. I return to Hawaii on 10/29 and after that, I will post the info that Koji relays to me by email.

Usually, when platelets drop, the cause is bleeding and the consumption is in efforts to bring it to a halt. There appears to be no gastrointestinal, urinary, intrapulmonary or intra-abdominal bleeding and if there is significant intracranial bleeding, I would have expected her physical coma to deteriorate quickly. At this time, I cannot explain the platelet drop. A result of chemotherapy? Chinese medical therapy? Healing? We hope for the best.

Aloha,



Dr. T