Cici's Status - From family (2/15 - 2/24)

2/24 (Fri) – Blood test qualified

Dr. Watkins called and notified us that the blood result of Cici was satisfactory to U of Pittsburg. Therefore she is qualified to attend the clinical trial known as “Immunotherapy for Childhood Gliomas”. Here is the detail of the trial:

• “A vaccine made from small proteins specific to gliomas will be given in combination with an experimental drug called Poly-ICLC, which boosts the immune system. Both will be given by subcutaneous injections at 3-week intervals for the first 24 weeks. Responding patients may continue receiving vaccines every 6 weeks for up to 2 years. Physical examinations, blood testing, and MRI scans will be performed periodically.”

But I don’t think Cici would be overly excited about this. She strongly believe God will save her without too much effort from human (doctors, parents and the like). She accused us for lack of faith in God by seeking help from doctors. Therefore she refuses to take any food (or medicine) that makes her uncomfortable.  
 2/22 (Wed) – Blood test for clinical trail

Our doctors referred us to attend a clinical trial organized by University of Pittsburg. Today is for Cici to leave blood sample for U of Pittsburg to check if she is qualified. They are looking for patients that contain the HLA-A2 tissue type. Cici was reluctant to cooperate when the nurse came to draw her blood. This is partly because she is scared of the needle, but mostly because she has fed up with the endless day-to-day doctors’ appointment and analysis. She has been a nice and sweet girl who was patiently waiting for her savior for 5 weeks. Now her impatience and frustration started to appear. She refused to eat dinner tonight as a punishment for our forcing her to take blood test today. She has not been eating fruit or drinking water very well lately because of her frustration.


2/15 (Wed) – Back to school

Start from last Friday, Cici is going back to school for 4 hours a day. It had definitely helped to boost her spirit. She like to be treated as a normal girl and live a normal live. We have a conversation with the corresponding school teachers and counselors this morning to go over Cici’s situation, so that the school officials know how to take care of her. The school will also assign a home bound teacher to help Cici to catch up. She also needs to make up enough school hours in order to advance into G5 next year. Cici works very hard to keep up with the class assignments. We sometimes have to force her to take a break and sleep. But most of the time we let her finish what she is doing because apparently catching up with homework is what she enjoyed.

Caring Messages

Message 1: "...[DIPG] at a crossroad...Whatever you decide to do will be perfect, as all your decisions for your child are made with love ..."

Message 2:  "...I am not sure it wil help you guys researches or not, but still decide to attach this long reading here just in case..."

Message 3: Eat to Defeat Cancer: http://www.eattodefeat.org/food

Homeopathic Remedies

A blog by a DIPG parent mentioned -- Homeopathic Remedies: We give Annabelle Ruta Graveolens 6c and Calcarea Phosphorica 3x. .. Dr. Warren (the NIH in Bethesda, Maryland) is telling other patients about this. She says, "It can't hurt!".
http://www.caringbridge.org/visit/annabelle/mystory

From initial research, we found Ruta Graveolens 6c is available and not expensive. It is made from using the fully concentrated and undiluted version of Ruta graveolens and diluted it 10,000,000 times (100 is represented by the Roman Numeral C, so 100x dilution gets 1C, and additional 10x dilution adds 1C to get 2C, so on and so forth).

Another DIPG parent mentioned "...Ruta 30c and we also used Calcium Forsade..." Ruta 30c is a much lighter version (i.e concentration diluted 10 ^ 31 = 10E31 times)
http://www.cancercompass.com/message-board/message/all,19312,1.htm?mid=433012

Ruta-6 group: http://groups.yahoo.com/group/ruta6
Another supplements group: http://groups.yahoo.com/group/btsupplements

Also found a webpage in Turkish regarding Ruta Graveolens. The following text is obtained by using Google Translator, while some  can be understood, the others don’t much sense because of the poor translation. On the bottom of the page (before comments), there’re a few links for references. 

"..Ruta 6c (Ruta graveolens 6c) and Calc phos (Calcarea Phosphorica 3x) 's homeopathic medicines developed by Indian doctors, Prasant and Pratip Banerji brain tumor drugs. Indian doctors in their study of 257 patients treated with this drug can be factored 2sinin also say that every third patient. Otto was put forward by the German physician Hahnemann Homeopathy active ingredient diluted drugs. According to the theory of some chemicals in the body even in very diluted, but show the same therapeutic effect when given in high doses impair the functioning of the body. Thus, any active ingredient homeopathic drugs, according to a normal level by using trace is diluted several times. Many scientists skeptical about this. Whether they really impact the way homeopathic medicines are a serious debate. Homeopathic remedies, none of this, said to be effective in treating severe major role in being supported by experimental data. Dr. Banerji'nin the situation is slightly different for the drugs developed. Dr. Banerji, such as a drug undergoing clinical trials for these drugs hold any of these results, other scientists presented review. Ruta graveolens, Turkish, Latin name is the name given to plants with rue. Since ancient times, plant a garden and a folk remedy used against many diseases. Facilitating effects of digestion, perspiration, be considered to reduce the worm, observed feature of antiseptic. Used during pregnancy can cause the child to fall. In addition, taking high doses of intestinal inflammation, renal failure and lead poisoning. Unwanted pregnancies, especially in Uruguay, this plant has been used in the literature. The reports of all young women who drink this plant has been dead to the hospital the next day sevkedildiklerinin. Rue, a plant which is popular among homeopaths. Dr. Ruta graveolens 6c Banerji'nin developed in a dilute solution of this plant"

中西结合治疗脑胶质瘤数据集 （7）

发表于江苏中医药，2002年，第23卷 第8期
http://www.jdzhongyi.com/zyyy/News_View.asp?NewsID=642

Abstract 提要 对近10余年来中医及中西医结合治疗胶质瘤的研究进展，从中医病因病机认识、中医辨证分型论治、中医专方治疗、中西医结合治疗等4方面进行了综述，并就今后的研究工作提出了问题，提出了建议。

Section -- 中医专方治疗
"...杨炳奎等［5］以祛瘀、消肿、散结立意自制平瘤合剂治疗胶质瘤术后复发的病例，主要药物有蛇六谷、天龙、水蛭、川芎、三棱、莪术、昆布、夏枯草等，共观察了46例，结果CR3例，PR30例，NC9例，PD4例，总有效率达72％。五年的生存率达32.2％，对比其治疗前后的NK细胞活性、TNF、PR、ERFR、LTR，结果发现治疗后有明显提高(P<0.01)。李文海等［9］用脑瘤消方治疗颅内肿瘤36例(其中胶质瘤18例），结果治愈9例，显效15例，稳定11例，无效1例，药物组成是金银花、连翘、蒲公英、莪术、夏枯草、三棱、白花蛇舌草、猪苓、牡蛎、半枝莲、瓜蒌、水蛭、蜈蚣等。唐由君［1］从补脾益气、滋肾利水入手治疗42例胶质瘤，总有效率达85.1%。宋慕玲等［12］用中药复方抗瘤粉（主要成分是半边莲、白花蛇舌草等）治疗脑胶质瘤47例，治愈5例，显效11例，好转16例，无效及死亡15例，总有效率68%。祝瑞德［13］根据辨证施治的原则用通腑泄浊、行瘀破积法治疗一昏迷的基底节颞顶部胶质瘤患者，方宗桃核承气合涤痰汤加减，病人在泻下大量恶臭便后神志渐转清醒，二个月后肢体功能恢复正常，随访1年半病情稳定。张锡君［14］将脑胶质瘤（术后）的病人分为肝风与痰浊两型，用熄风涤痰、活血化瘀、益气养血的颅复丸、散结丸及温胆汤加减治疗20例病人，显效8例、有效5例、无效7例，经脑核素扫描、CT检查比较及随访后，作者认为肿瘤部位在额叶及病理分级在1-2级者其生存率较高..."

Total of 12 articles with the topic "中西结合治疗脑胶质瘤数据集" can be found at:  http://www.jdzhongyi.com/zyyy/news_more.asp?lm2=89 

Cici's Prayer

Cici learned writing her prayer letter in Sunday school this past Sunday.

Caring messages:

Message 1: I was Cici's (and Ern's) teacher and have recently heard about what she is going through.  Please let B/N and the whole family know they are in my prayers.  I wish them strength and comfort as Cici receives her treatment and tries to heal from this.  With love, Denise H (Nesbit Ferry Montessori)

Message 2: Info forwarded from Sherry (Director of Patient & Family Services, Brain Tumor Foundation for Children, Inc) -- Family will receive a care package from BTF; Please talk to social worker Susan (at Scottish Rite) about financial assistance if needed, and contact Sherry if interested in connecting to other patient families.

Cici's Status - From family (1/19 - 2/1)

2/1 (Wed) – Good appetite

We went back to the Pediatric Oncology for routine checkup. Dr. Mazewski  and Dr. Watkins were excited about Cici’s improvement. However, Dr. Mazewski also pointed out that Cici’s symptom were not as severe as other kids with tumor of the same size. Cici’s improvement is exceeding expectation but not exceptionally outstanding.

One of the side effects of taking Decordron (the steroid) is the big appetite. Cici is constantly in the good mood to eat. She wakes up at 7am everyday to look for food and eats 5-6 full meals a day. But right now that seems to be a good problem to have. As long as she has regular bowl movement, we will let her eat as much as she wants. We try to avoid excessive meat and tend to feed her with veggie and fruit (mixed fresh berries, grape, and pear) and PowerAde. She love Chinese dumpling (JiaoZi and BaoZi). Thanks for God’s love, brothers and sisters at our church have been delivering food (dinner and fresh fruit) to our front door 2-3 times a week. 

1/27 (Fri) – Feeling better

Cici only vomited once in the morning as oppose to 5-6 times yesterday. She is clearly doing a lot better in the afternoon. Radiation has been proven to be effective to treat DIPG. But the positive effect normally will not start to appear until 2-3 weeks of radiation. For Cici, her tumor reacts to the radiation faster than doctors had expected and therefore her symptoms were mitigated dramatically.

1/25 (Wed) – Constipation

Cici hasn’t have bowl movement since last Monday. Her tummy was so rigid that she cannot eat anything without vomiting. The doctors at the Radiation Center prescribed Laxative for her to use. After application, Cici felt much better. Her strength and appetite has recovered a lot during dinner time.

1/23 (Mon) – First Radiation

Today is the first day of the scheduled radiation treatment. Cici was very nerves. She vomited in the car as we drove around the parking deck of Winship Cancer Center.  When the nurse put on the mask for her, she tightly held on her mother’s hand until the nurse find a stuffed teddy bear for her to grab.

 

1/22 (Sun) – After all is set to go

On Friday we start to feed Cici with the steroid (Decordron) and drug that control nausea. She is feeling better but still weak. Church pastor and elders come to visit us Friday night and we pray together for God’s mercy. Just like our friend’s 7 year old son puts it “When I shot basketball, do you know what happen after the ball left my hand? It is in God’s hand!”. Lord, we’ve done all that we can, now we rest as we should and wait for your mighty hand to compose the miracle.

1/19 (Thur) – Meet with the Radiation Oncologist

This morning, we went to Emory Hospital’s Winship Cancer Center to meet with our Radiation Oncologist, Dr. Natia Esiashvili. They have Cici's radiation mask done today. The mask is made of plastic that shaped according to patient’s facial structure. It is to lock the patient’s head on the radiation board so that the laser gun can precisely focus on the target spot each time as it goes.

Cici's Status - From family (1/13-1/18)

Prayer

A group of local and online Christian friends started an organized prayer effort every night at 10pm ET, to pray for Cici and her family. Please join this prayer effort in any way you can.   

MD. & Medical Facility Recommendation

The two people we would recommend are --
Michelle Monje at Stanford And Roger Packard at DC Children's

Michelle is also a  personal friend of the email sender. The sender would be happy to pass the patient family’s info to Michelle so she would know who is calling her and why. Please contact us for the sender’s info if needed.

Another Inspiring Story - Annabelle Crowson

Essentially, Annabelle is a happy, normal girl who turned 8 in February 2011. She was diagnosed with DIPG in September 2005. She is an absolute walking miracle. And this is her Journal and her story.

Her blog was created on Sept 19, 2005. This is the first few paragraphs – “Tuesday, September 13, 2005, Annabelle was diagnosed with a brain stem glioblastoma. Because of the location of the tumor they will not operate on it….Tomorrow morning we have an appointment with the Radiation Oncologist, and they will take Annabelle through a "simulation". They will mark her head so that the radiation hits in the same location each time….We are confident that God is in control and we are overwhelmed with the love and support that have already been poured over us.”

This is the most recent blog posted on Dec 23, 2011 “... Here we are at Christmas time, six years and three months after Annabelle's diagnosis. WOW!! We had quite a scare back in June with some enhancement on the MRI, Drs. now think it is perhaps a resorption of scar tissue. Whatever it is - God is in the miracle business and we are daily humbled by his grace and power. What HE has shown us through our precious Annabelle's life is proof positive that HE is in control of our everything. Merry Christmas to All!”

Iressa (ZD1839)

“While the nature of cancer is complex, scientists believe cancer begins and spreads through growth factors which prompt improper cell duplication.   The epidermal growth factor (EGF) is one of the stimuli to this cell duplication.  The process begins when EGF connects to a receptor (EGFR).   By preventing this connection,  Iressa aims to show the cancer process and has shown   promising results in some clinical trials for non-small cell lung cancer .”

“Many believed that combining Iressa with chemotherapy would become the standard treatment.  Since Iressa's side effects are generally limited, it was hoped the drug could be added to standard chemotherapy to create a powerful drug combination to fight lung cancer  for non-small cell lung cancer, and perhaps other diseases.”

Complete report “IRESSA (ZD1839) REVIEW and EPIDERMAL GROWTH FACTOR INHIBITORS” at http://www.lungcancerclaims.com/iressaold.htm

Other information on Iressa:

http://www.aboutcancer.com/iressa.htm

http://cancerres.aacrjournals.org/content/62/20/5749.long

Iressa Trial Status (as of 10-20-07)

aliotta.com “DIPG Family Help” section listed “two children who are doing well on Iressa (aka gefitinib, ZD1839).” 

Dasia Atkinson - Diagnosed 03/23/2005. Dasia showed significant tumor shrinkage and continues to do well.

Aidan Zaugg - Diagnosed 04/14/2006. In summer 2008, Aidan's tumor returned and Aidan continued the battle, though his tumor was held off for nearly two years from diagnosis, w/ totally symptom free.

Dasia’s Inspiring Story - Almost 7 Years Now

Dasia was diagnosed with DIGP on Mar. 23, 2005, @ the age of 7. She had an immediate surgery to release fluids trapped in the brain by the tumor.  “...During that hospital stay our doctors told us all the details of the tumor, that there is very little they can do and that there was only a 6-12 month life span on Dasia's life”. After Dasia had completed her six weeks of radiation and was still on her chemotherapy called ZD1839(Iressa), her first MRI after the radioation (June 7, 2005 ) showed her tumor shrunk to the point that it was very hard to find, or as the doctors labeled it as "a significant decrease".

The journal was started on March 16, 2007, two years after the diagnosis. “...Dasia is going into her 3rd year of treatment on the same chemo (Iressa) and she has had no sideffects and is doing great.”... Jan. 30, 2008 “I just spoke with the doctors and there advice is to take Dasia off all medications. Dasia was off chemo!"... Last update on Jan.30, 2012  “Dasia's scans came back clear, with no new changes!!!! Praise God”. Dasia is currently doing great with her normal school life.

Read Dasia’s Journal at http://www.caringbridge.org/visit/dasiaatkinson/journal.