Testimonials

Email to remember (Rod, Philippines)

Rod Padua, President Touched By Max (Philippines)

1ca07 CIMG0157s“My friend:

This is all too sudden, my eyesight cloudy from the tears constantly flowing, it pains me deeply just to write this e-mail...

My youngest son just turned 9 years old. Tragically, on the day of his birthday, my wife who was cradling him, noticed that his stomach was way too big and taut. After tests were conducted on him the next day, it was found out that his spleen was 18 times the normal size. His doctor says that if by accident his spleen gets punctured, he wouldn’t lasts 3 minutes.

But as it turned out, it was just one of more tragic news to come…

The next few days we spent with several pedia-haematologists/oncologists. Days I wish to the heavens it should have been me, not my son, he still has a lot to live for. Soon, he was diagnosed with CML…

It’s a rare type of leukemia that is usually not applicable to children. There is no known miracle drug yet but there have been some promising cures. We are in the hospital right now, he is to undergo bone marrow tests. The bottom line is he could die anytime in the future, notwithstanding. The amounts involve in the treatment are staggering. There is a foundation that gives aid for this, but our doctor says they have closed the window for additional applicants.

Please tell me anything you know about cures, foundations, aids, miraculous saints, that I could probably access. Please help me and my son, and I hope it’s not yet too late... Rod”

Eventually, this e-mail circled the world of the internet in 2006. Soon, assistances of blood certificates from persons I don’t even know, prayers from congregations I never even heard of and messages that inspired me to have hope & faith flooded my inbox.

But there was one e-mail that was perhaps the most priceless: An e-mail containing information about NOVARTIS, GIPAP, The Max Foundation, and Glivec.

And the rest is history… From a WBC count of 296,000 (healthy is 5,000-10,000) and FISH levels of 59% (healthy is 0%), my son, Maverick is on his way to complete remission after 5 years of Glivec. Instead of being frail, he is so energetic, instead of burnt skin (from chemo), he looks like he is taking those vanity pills which make you white and instead of losing hair, he can grease it anyway he wants. Having skipped a year of elementary schooling, he is back with much enthusiasm, even gaining school honors along the way.

Truly, God works in mysterious ways.

And in those sleepless nights wherein we were in the hospital a number of times, for chickenpox and other life-threatening ailments alike, my family has never ceased to “talk” to the Almighty, to seek His loving, healing hand. I don’t ever think I could thank God well enough for making Maverick lead a normal life but I sure could help devote my time in every which way I can to help others.

And soon enough, probably in a few years’ time, my son would be writing e-mails of thanks to persons he doesn’t even know, congregations he even hasn’t heard of… But sure enough, one email saved my son’s life…

Thinking of Max (Pat, USA)

Pat Garcia-Gonzalez, Executive Director, The Max Foundation (USA)

4efed Max05 300pxDear Friends,

Max was 14 when he was diagnosed with chronic myeloid leukemia (CML). A lingering cough and a doctor's check up revealed an enlarged spleen; from there, blood tests, more tests, shock. It was August of 1989.

Max went on to take hydrea and then a very promising drug at the time, Interferon, all the while we searched for a matching bone marrow donor. He did well on interferon and had little side effects. He was 15 by then and he would prepare his own interferon shots. Shots and blood draws soon became part of his routine.

Max lived with CML for almost 3 years, from 14 to 17. There were no patient support groups back then. In fact, there was no internet; no contact with other people with CML, no disease information other than the one provided by Dr Talpaz, his doctor. Max did not want to think about his disease if he didn't need to. He didn't hide it, but for the most part, while he was with his friends or in school, he enjoyed not thinking about it.

Many teenagers just want to live their lives, and not really dwell on the reality of the disease. Nowadays they seek information online when they want it, on their own terms, and they come to us when they need us. As adults, our job is to be there and alert to catch those moments in which a little window opens, and we must be prepared with our answers.

Today in my position as Executive Director of The Max Foundation, I am aware of more than 40,000 people diagnosed with CML in the past 10 years from 80 countries, a database where the average age at diagnosis is 38 years old including more than 2,000 children and at least 150 of them ages five or younger.
When thinking about a Junior CML site, I hope it will accomplish three goals: 1, bring awareness about the high number of cases of children with CML worldwide and spearhead research about the consequences of long term treatment; 2, provide resources and information to junior CMLers themselves, as well as to their parents; 3, provide a safe site where junior CMLers can ask questions, share experiences, be themselves.

As often is the case with children who face a difficult diagnosis at an early age, children with CML are wise beyond their years. It is my hope this Junior CML site will honor their courage and help us learn from them.

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A story of little Marina from Russia

Irina Devyatkova, Marina’s mother, Lena Gratcheva, Advita, Russia

 

Marina from RussiaLittle Marina’s family got the shocking CML diagnosis of their daughter when she was only 2 years old, in the year 2003. It all came out so unexpectedly, when her parents took the little girl to the doctor for the regular check-up. The WBS Count showed a threatening figure of 110,000.

The only treatment that existed at that time was hydrea. We heard about the existence if Imatinib though, however unfortunately it was not available in the country. The drug was too expensive for us to buy from abroad. Luckily we could get Imatinib later when it was approved by the government in the list of the drugs that oncology patients could get for free. Marina started to take 400 mg Glivec daily and her blood results started to improve. The family started to hope for the best.

Every 6 month we were taking all the necessary test and then here it is. A little more than a year passed the bone marrow biopsy showed the Philadelphia Chromosome was back in the bone marrow again. The doctors increased the dose of Imatinib to 600 mg a day. However, unfortunately the things were only worsening and the doctors could see little Marina’s survival chances in Bone Marrow Transplant. Unfortunately, this was another shock that we got. Marina didn’t have a related donor and a huge amount of money was needed for the donor search abroad, as the Bone Marrow registry doesn’t exist in Russia. We went on searching the internet and became a new member of Advita Family. Advita is a charity organisation in St. Petersburg that helps people with onco-hematological diseases since the year 2002.. Advita put our story on its website and we were lucky enough to have lots of people and organisations’ support. The money for Marina’s BMT and our stay in St Petersburg was collected.

Marina had her Bone Marrow Transplant in February 2009, from an unrelated donor. Since then she has passed though quite difficult stages in her life very bravely.She was on Imatinib for some time after she was transplanted, but then it was stopped because of the severe side effects.

9 year old Marina is continuously going through various therapies in the hospital. Today she is at home till the end of February and doing very well. We are so happy and grateful to everyone who has helped. It is indeed hard to believe that all of this happened to us. And it is scary to think what if there were no internet…

One Last Chance (Kristine, Philippines)

Kristine (Philippines)

f7e51 untitledLife for me is a battle. A 7-year old girl who is supposed to enjoy the gift of life, youth and innocence, procured a sickness nobody would ever dreamed of.

My illness was discovered during my elementary school years. At first, my health “seems” fine. But when I reached Grade 4, I was in trouble. It was just a sudden change in my health, loss of appetite, I easily got tired, I got pale and physically weak.

Since then, I started taking 8 different oral medications and it’s like I’ve been taking different colored candies all my life with awful tastes! Then I stopped schooling, avoided tiring activities and worse, I lost my hair. After endless sessions of chemotheraphy, from chronic to acute stage, it was a miracle to get back to chronic stage.

I was given another chance.

Unfortunately, due to the extremely high price of medicines, not to mention the lab tests, my parents can no longer afford to give me “one last chance”… Then, we were informed about Novartis, The Max Foundation and GIPAP.

These are God-sent entities which help persons like me be like other normal human beings. God is so good that I qualified as a recipient of the miracle drug, “Glivec”.

Now, I’m already 21 years old, a 4rd-year college major in management. And if people would see me now, nobody would say that I’m a CML survivor.

Through time of tribulations, I let everyone receive a loving smile from me. In facing hardships and trials that life hand me, I am a pillar of courage. I believe we all go through challenges for a reason. My story is one to share, so that others too may be inspired. Let us not forget to look back, so that we may see how much we have progressed…

Is cancer a hereditary disease? (Fidan, Azerbaijan)

Fidan, Azerbaijan (Leukemia Patients Support Group, Azerbaijan)

07262 ipod fidan12 year old Fidan is suffering from Chronic Myeloid Leukemia since she is 5. As she never had access to any TKIs she started to get chemotherapy since she was diagnosed.

As if this was not enough, 2 years later her mother got another shocking news when she started feeling strange. This was a breast cancer. Instead of spending more time with her only child and worrying about her, she had to start caring about herself too, for both of them. There were two of them now against two cancers.

Mother and daughter are travelling to Iran very often for the chemotherapy procedures. Mother had her breast been amputated recently, and continues chemotherapy courses.

However, very unfortunately Fidan’s CML has recently progressed too far – to a Lymphoid Blast Crisis stage, and as the family doesn’t have any opportunity and access to the Bone Marrow Transplant, she continues chemotherapy.

An interesting and a dreadful fact is - a mother and a daughter are both in remission almost at the same time, and then when the daughter’s health condition deteriorates, it is almost immediately reflected in her mother’s health.

The frightening story of Fidan and her mother makes you think how this can happen? Is this a coincidence? A stress? Or can it be inherited? No one has an answer to this today. Looks like it has one big root with many many faces. The doctors and scientists keep referring to the genetic disorders, however, one of the recent researches on genetic codes revealed that there aren’t any codes recorded on physical level – the DNA material itself.

Leukemia Patients Support Group in Azerbaijan is in regular contact with Fidan’s family, and regularly organising fundraising campaigns for them, to cover the basic expenses. Wishing both Fidan and her mother lots of strength and patience to overcome the severe battle in their life. God bless them.

What is pediatric CML?

What is Chronic Myeloid Leukemia (CML)?

Chronic myeloid leukemia (or myelogenous leukemia, CML), is a cancer of the white blood cells. It is a form of leukemia characterized by the increased and unregulated growth of myeloid cells in the bone marrow and the accumulation of these cells in the blood.

CML is a bone marrow stem cell disorder. It is associated with a characteristic chromosomal translocation called the Philadelphia chromosome. In this translocation, parts of two chromosomes (the 9th and 22nd) switch places. As a result, part of the BCR ("breakpoint cluster region") gene from chromosome 22 is fused with the ABL gene on chromosome 9, creating the "fusion" gene bcr-abl, called a tyrosine kinase.

The tyrosine kinase is continuously active and does not require activation by other cellular mechanisms which normally regulate the division of cells. This leads to an uncontrolled multiplication of blood cells. Moreover, the bcr-abl protein inhibits the cells' DNA repair mechanisms, making the cell more susceptible to developing further genetic abnormalities.

With improved understanding of bcr-abl, targeted therapies like imatinib, nilotinib and dasatinib have been developed. These specifically inhibit the activity of the bcr-abl protein. These tyrosine kinase inhibitors are able to induce complete remissions in CML in about 80-90% of all patients treated in the first phase of the disease, the chronic phase.

What is so special about childhood CML?

In general, acute leukemias are most prevalent in children and are therefore often referred to as "childhood leukemias". The chronic forms of these leukemias, including Chronic Myeloid Leukemia (CML), are seen almost solely in adults. With the average age of diagnosis of CML being around 60 in western countries, CML in children is considered an ultra-rare condition. Incidence is unknown but estimations range around 20 new cases per year in Germany (80 million inhabitants) and 100 new cases in the USA. It accounts for less than 3% of all childhood leukemias and less than 10% of all CML cases. Incidence is suspected to be higher in developing countries, with The Max Foundation saying to have more than 2.000 pediatric CML patients in their database.

Long-term survival of pediatric patients with CML receiving hematopoietic stem cell transplantation from fully-matched related and unrelated donors has been reported between 60-75%, but is associated with significant morbidity. Imatinib and reduced intensity conditioning stem cell transplantation are two promising tools that offer potential for decreasing therapy associated morbidity for patients with CML. Recent publications by study groups indicate that stem cell transplant has been shifted to a 2nd line strategy also in pediatrics.

However, as CML is rare in children and young adults, most data on imatinib therapy is derived from adult studies where average inclusion age is around 45. In addition, there are certain issues like a negative impact on bone growth, uncertainty about long-term effects of TKI therapy, challenges of adherence to therapy, fertility and family planning issues as well as psycho-oncology that are more specific to CML in children and adolescents.

Specific treatment recommendations for pediatric CML

In 2014, a group of renowned pediatric CML experts published treatment recommendations on behalf of the International BFM Group (iBFM) Study Group Chronic Myeloid Leukaemia Committee. The recommendations apply specifically to young CML patients and were published in the British Journal of Haematology with the title "Managing children with chronic myeloid leukaemia (CML) - recommendations for the management of CML in children and young people up to the age of 18 years". Please find the abstract below. Click here to access the full article.

Managing children with chronic myeloid leukaemia (CML): recommendations for the management of CML in children and young people up to the age of 18 years.

 

Abstract

Chronic myeloid leukaemia in children and young people is a relatively rare form of leukaemia that shows increased incidence with age and some evidence suggests that the molecular basis differs from that in adults. Significant advances in targeted therapy with the development and use in children of tyrosine kinase inhibitors and the ability to monitor and understand the prognostic significance of minimal residual disease by standardized molecular techniques has shifted the management of this condition from bone marrow transplantation as the main therapeutic modality to individualized treatment for each patient based on achieving specific milestones. The physiological changes occurring during childhood, particularly those affecting growth and development and the long-term use of treatment, pose specific challenges in this age group, which we are only beginning to understand.

 

Organisations supporting children with CML and their parents

Patient & parent organisations for pediatric CML patients

Additional Websites on pediatric CML and childhood cancer

Activities and initatives carried out by pediatric CML organizations

 

On this page you can find the latest activities and initatives carried out by patient & parent organizations for pediatric CML patients:

 

logo-ElternvereinGermany: 5th annual family meeting of the German Elternverein für Kinder mit CML e.V.

From 2-5 October 2014, the German group welcomed 20 families and 34 children (18 of them CML patients) to Gstadt at Lake Chiemsee for the 5th annual family meeting. For many junior CML patients and their parents, this annual get-together has become THE eagerly-awaited highlight of the year. One of the main objectives of the meeting is the exchange of information and knowlege. For this purpose, the organizers had invited pediatric CML expert Prof,. Suttorp from the University Hospital Desden who gave an interesting and informative lecture on the current state of research. But the fun did also not come too briefly. The leisure program included a waterskiing lesson (see youtube-video!), an evening barbecue dinner and a visit to the Octoberfest (one of the largest festivals in the world) taking place nearby Munich. Click here to see the full report in German language.

 

More activities will follow soon!

 

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