Wednesday, September 30, 2009

CHILDHOOD CANCER AWARENESS MONTH

Today marks the last day of Childhood cancer awarness month - but it cant end here - this has just got to be the beginning of the awarness we can create, the support we can give, the prayers we can say, the funds and projects we can contribute towards to find the cure to end childhood cancer.

I have been so touched, sharing some stories with you of an amazing group of heros and legends. They have touched our lives more then they will know , and i am grateful for them letting me share their stories.

There are hundreds and thousands more precious children who are survivors, warriors and angels and i would love to honor them all - i have only mentioned a handful of these amazing children as i said i would each day in September, but i would like to honor todays post to you all - to those that we have come to love and know and treasure, those we only know be name, those we are still yet to met - to you all, may Our Lord and healing Savior bless you, reign His love upon you and your families, heal you, guide you, light your paths, strengthen you, comfort you and bring you His Hope, forever and always. I promise to do all in my power to continue fighting for this cause forever more.

here are more children i would like to mention and ask prayers for, there are so many more around the world, God Bless you all

Angels
Katie
Emily
James
Austin
Erin
Tyler
Isaac
Cody
Madison
Lillie
Koketso
Sarmone
Yolanda
JP
Chiarra
Charlize
Kata
Jayden
Henco
Sofia
Anna Meg
Brody
Joe
Marinus
AJ


Warriors
Sam
Nicholas
Melina
Charlotte
Anna
Imogen
Elijah
Quincy
Elizabeth
Sam
Joshua Cade
Carter Cummings
Max
Jordyn
Zach
Zachary
Billy
Wyatt
Sydney
Landon
Christian
Pierce
Connor
Dylan
Grace
Jackson
Kerith
Laura
Sam
Sydney Marie

Survivors
Toby
Sarah
Morgan
Mackenzie
Kristen
Kaitlyn
Megan
Destiny
Chad
Carter
Emma
Cherise
Sammy
Marett
Dunn Twins
Sean Hanson
Jak
Ryan
Mackenzie

NATIONAL BANDANA DAY 14 OCT 09

Please support those suffering from leukaemia and buy a Sunflower bandana for only R20 from your nearest Pick ‘n Pay store to wear on National Bandana Day on 14 October 2009.
Every South African is encouraged to wear a bandana to work, university or school to show their solidarity with those fighting leukaemia.
During the preparation for a bone marrow stem cell transplant, patients lose their hair and often wear a bandana to cover their head. National Bandana Day will boost the morale of cancer patients, as well as raising funds urgently needed for tissue typing more donors.
Thousands of South Africans, especially children, are diagnosed annually with life threatening blood disorders. For many, a bone marrow stem cell transplant from a healthy donor is the only possible life-saving treatment option. This is a daunting and traumatic task, with the chance of finding a matching donor about 1 in 100 000. Since the inception of The Sunflower Fund the registry has grown from 1 200 donors to just over 64 000 donors today.
The Sunflower Fund is a national non-governmental, non-profit organization based in Cape Town, South Africa, which runs a toll-free call centre, to recruit donor’s representative of all ethnic groups for the South African Bone Marrow Registry.
The Association of Round Tables of Southern Africa, including Namibia is committed to this campaign and will be promoting the sale of bandanas at centres around South Africa.
Lots of fun events and activities will take place around the country, watch the press for more details.
Don’t forget to let us know if you have anything exciting planned for National Bandana Day at your school or company. We would also appreciate any photos of your day to add to our website and our scrapbooks.
Come on South Africa, “Share a Little, to Save a Life”
Call our toll-free line on 0800 12 10 82 or contact us here more information

Tuesday, September 29, 2009

LIFES GOOD!!!

Hello Everyone

How are you all doing? It has been a loonnngg while since i sat down and wrote a post on how our precious Deqlan is doing - the answer is GREAT!

Deqlan is a lot more verbal at the moment, he is really attempting to say a lot of what we say and a lot of new words emerge each day. He is interacting more, he is understanding a lot more things, we know he knows a lot more then what he shows the world....

Some of his newest words include;
JESUS!!! from a DVD with the words, JESUS HAS RISEN AND FULFILLED THE PROPHECY!
bbc - like the british tv channel - he points as he says each letter B , B , C
LG -LIFES GOOD - oh this is to cute for words - LG like the electronic brand, Deqlan has always loved, but no he is saying the slogan to LIFES GOOD - yes it is my boy, its great
SAMSUNG - could be a bit of competition between the two hey?
NO - and very clearly to! when Deqlan wants to smack me, because he is excited, not because he is being naughty, or when he wants to throw something, he is so used to me saying no, he now does the action and the word, no at the same time!
SCISSORS
OGAN - FOR LOGAN
MEGGIE - he touches Megs car, then says Meggie, then touches my car and says Mamma!
3,2,1 - yip, Deqlan can count backwards
11 & 12 - in addition to numbers 1 through ten, he can now say eleven and twelve
CHA - for change - while wathching his cedarmont kids songs, if he isnt fond of the song, he will say CHA and we got to change to the next one - his favorite song at the moment is SKINA MARINK I DINK - forgive the spelling, i dont know if there is even a correct way to spell it!
TEDDIES - will explain below

Deqlan is loving music at the moment - he is humming along to the songs on his dvds and has even starting putting in words to the songs i hum and at the end of the song, he sings PUM PUM - do end the song off!

He continues to love Kowee chanel, the afrikaans chanel on dstv - i sing the la la la la part of the them song for Teddies and then Deqlan so beautifully and so sweetly fills the words in, " teddies, teddies, teddies pum pum' TO BEAUTIFUL FOR WORDS

Deqlan continues to love ALL THE SINGLE LADIES, but it has to be sung and acted out by Nanna to get the biggest smile and enjoyment !

Our little guy loves tucking Nanna and i into Nanna and grandpas bed to watch his dvds with him, and we have to lie in our assigned sides of the bed and our heads have to be down, while Deqlan ensure he has two pillows on his tummy - again, to do with the need for feeling deep pressure, he also wants us to lie on him to get this feeling when he needs it.

Deqlans tummy has been a bit upset the last few days - typical candida nappies, but he hasnt eaten anything, that we know of , to cause this and his behaviour doesnt match a candida flare up - so we will just keep an eye on it.

We gave him some cold beef slices the other day, which we thought might be a welcome change to the only handful of things he does eat, he gladly ate it, but his tummy sure wasnt glad about it and it came all back again. We also tried sweet potatoe, even hiding it in mince balls, but Deqlan could even pick the taste up this way and wouldnt touch them. Deqlans tummy is so sensitive, you can only imagine what wheat and dairy and sugar and soya and yeast could do to him and how yucky it could make him feel.

Deqlan is excelling at the table work Nanna so lovingly does with him everyday - we were treated to some of his skills, when Nanna casually brought some items out for Deqlan to play with - Liezl, our home intervention therapist asked Nanna to aim at Deqlan building 3 block towers - well my friends, the sky is the limit - Deqlan will build and build until each block has been put on the tower! He can also do quite a tricky fishy puzzle - you need to fish the pieces out with a fishing rod - he does this with such ease - Nannas face lights up at all the things Deqlan can now do, which he couldnt before she started the table work with him - she is SO proud, and mom I am so proud of you and i cant thank you enough for what you are doing with and for Deqlan, its priceless and Deqlan is going to reach his full potential because of you!

i still have to post the photos of Deqlans birthday party - but there are over 300, so its taking me a while to get through them all,but i promise sooner then later!

Have a lovely day everyone, God Bless and love
Mark Samm Deqlan Logan
REJOICE IN THE LORD ALWAYS AND AGAIN I SAY REJOICE!

SURVIVOR-MADELYN BELL, USA

Summer Babe
Madelyn during treatment with her big sister

Another cutie pie, another story of hope and faith and trust...meet Madelyn.

Here is the beginning of Madelyns story:

Madelyn Grace Bell was born 7lbs 9oz and was 19 3/4 inches long. She has the feet of a 3 year old, but we figured that would work itself out. Everyone who saw her said what we knew, "She's perfect!". We took her home on September 22 at an average speed of about 25 mph.After she was home, everything was great. Her initial visits for post partum checkups all went well. On October 17, 2006, we noticed that her left eye was a little red and swollen. Having served in the Army as a medic and working for a few years in different intensive care units, I figured just what the doctor would order - rule out conjunctivitis though topical antibiotics.We followed this treatment for the defined period and saw no improvement. We asked to see an eye doctor and were referred. We visited the eye doctor and we continued the same treatment but changed topical antibiotics. We returned after a week when we were told by the doctor that it appeared to be getting better and to give it some time.With my background, I was OK with staying the course. My wife Sheila, however, was not as patient as I was. We called our pediatrician and got an opthalmic eye drop (as opposed to an ointment) to see if we could get better results and the physician obliged. Another week and and no improvement led my wife to request a visit with a second opthalmologist.On December 12, 2006 we visited Dr. Ed Cheeseman with the opthalmology group at Palmetto Richland and USC School of Medicine. I did not attend this appointment as I had to work. My wife was excited about the possibility of getting a new perspective on what ws going on with our daughter's eye and returning those beautiful eyes to normal. She called me at work at about 9:30 AM. She said that Dr. Cheeseman wanted to rule out Horner's syndrome. I had never heard of this, so I performed a quick web search. I scanned through and quickly determined that the root causes for this were all pretty significant. The most common cause in children Madelyn's age is injry to teh brachial plexus, a nerve in the sympthetic chain that affects innervation to the face and eye. The sympathetic nervous system is that which we don't control. Mdelyn's eye was "drooping", not swollen. Her pupils were not evenly dilated. Her left eye was not the same color as the right. We don't control these things willfully. Hopefully that explains it.I rushed down to the doctor's office to hear it for myself. When I got there, Dr. Cheeseman had given her 1 drop of Iopidine (aproclonidine) in each eye to test his diagnosis. When I arrived, Madelyn's eye was normal. Her pupil was dilated. The lids were equal. Unfortunately, this meant she did have Horner's syndrome.The doctor advised us that this is primarily the result of injury during delivery. She would have normal vision, and could possibly have plastic surgery to releive the drooping. That upset us because the psyche of a young child, especially a girl, is deeply affected by their appearance and self esteem. He also said that we needed to rule out any other causes. The primary one he felt was worthy of mentioning was a condition called neuroblastoma. We scheduled MRI scans of her head, nack, chest, and abdomen for Friday, 12/15/2006.That night, Madelyn was not herself. She was lethargic and cried terribly when she was not sleeping. Possesing a healthy appetite, we was concerned when she really didn't wake for feedings. We did not know at the tme what the drops were that she had been given, so we called the hospital and were connected with Dr. Cheeseman who advised us to take her to the children's ER at Palmetto Richland. She was admitted and watched until Thursday as she began to return to normal Wednasday night.We returned to the hospital on 12/15/2006 for the MRI scans. We sat impatiently awaiting Madelyn's return. She came back to us and was crying, so her recovery from the conscious sedation (chloral hydrate) was going well. Shela fed her and all was well. We were told that the scans with contrast could not be completed because Madelyn woke as they were to inject the contrast. I asked if we would need to come back Monday, and the nurse said, "They may have enough information". An incomplete test that finds nothing must be completed, so we were immediately concerned that something was wrong.Dr. Cheeseman cam in to speak to us and gave it to us straight out. Madelyn has neuroblastoma. We were devastated. He went on to explain that she had a tumor in her left chest that measured almost 4cm across in her middle back area. They suspected some local lymph node involvement. What almost stopped my heart was when we were told her liver was involved. We had read briefly about NB, but this meant something: it had spread to the other side of her body. I almost dropped her in grief as I exploded when I asked for clarification. "Do you mean tumors in her liver?", I said. When told yes, I was crushed.We were set up with a appointment with the pediatric oncologists on Monday, 12/18/2006 and managed to drive ourelves home after about an hour of just soaking this in and holding Madelyn tighter than ever before.This is the day our life changed forever. Subsequent posts will be made as often as we can to bring everyone up to date as contacting everyone is impossible. Feel free to make posts here in support of our baby girl.Thank you and God bless,The Bell Family

Initially Madelyn was diagnosed with Stage 4s, but later testing revealed she was in fact stage 4, and therefore required chemotherapy as part of her treament plan. She recieved 4 rounds of chemotherapy and the MIBG scan continued to light up slightly in her chest area, so it was decided to do another 4 rounds of chemo. Madelyn was declared NED in August 2007! Praise Our Lord!


Madelyn still continues to go for regular scan check ups, her latest being in August, and as you will see from her latest post, she remains NED and more scans are needed for the foreseeable future!
www.madelynbell.blogspot.com


We continue to pray for you Bell family and that your gorgeous Maddy will continue to remain NED forever and always! Sending you hugs and love and support always!

Monday, September 28, 2009

SURVIVOR, KEIRA GRACE BOWMAN, TEXAS, USA

The Bowman family
Gorgeous Keira!

Keira on her first day of chemo with over a hundred ducks from students and family and friends


This is the very first introduction we had into the world of neuroblastoma, other then ourselves. We sent our a prayer request for Deqlan, when he was just diagnosed, to a very strong Christian friend of ours, who happened to forward it on to some prayer friends in the USA. The very next day we got an email from her, saying that a little girl in the church, was recently diagnosed with the same cancer, and gave us a website address for her 'blog' - this was the first time i have ever gone into a blog, let alone understand what it was.







We opened the pages to be greeted to the beautiful little face of Keira. She was diagnosed with stage 4 neuroblastoma at the age of 10 months , on march 9 2007. The main tumor was in her chest and tests revealed had also spread to her bone marrow. She was classed as intermediate risk as the n myc gene was non amplified.







As we collected and Deqlan loved, and still loves Frogs, Keira and her family and friends started her family of Ducks!








Keira had chemotherapy and surgery and responsed very well. I wanted to share the post her parents did on the day they recieved wonderful news:





Today is a good day . . . today the doctors gave us amazing news that I believe I am still digesting. It is news I can hardly believe: Keira is beating the cancer.I will post the details in a minute, but for those who have been with us the whole time and for those who joined along the way, I feel compelled to take a short journey back to what our lives have been like since March 9, 2007. Following you will find some short quotes from previous posts. If you have the time, take a minute and see what God has faithfully brought us through. I have listed the date the entry was posted and then just a brief section that describes something we were going through.. . . march 9, 2007 "Friday night March 9, 2007 our little girl was diagnosed with cancer. It was the most difficult news either one of us had ever heard. That evening we could barely hold it together and honestly thought it was nightmare we would eventually wake from.". . . march 15, 2007 "Our familes are doing all they can, but live in different states. However, we do not feel alone. We not only feel our families' love, but we feel the love of church of God . . . it is a testimony to what it means to be a believer in Jesus Christ.". . . march 26, 2007 "We also know that while our family needs the results to be good, God does not. If God is going to heal our little girl, we must believe that He will heal her no matter the prognosis. Percentages mean nothing to God. I know this in my mind and my heart is trying to hold onto to this truth, but it is hard at this moment in time when it is my daughter's life that is the percentage we are talking about. All morning I have been singing this song:Great is Thy faithfulness, O God my Father; There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not; As Thou hast been, Thou forever will be. Great is Thy faithfulness! Great is Thy faithfulness! Morning by morning new mercies I see. All I have needed Thy hand hath provided; Great is Thy faithfulness, Lord, unto me! My singing is not yet because I feel this truth completely in my heart and emotions, but because I know it is true, because I need it to be true, because God is truly all we have at this moment. ". . . march 29, 2007 "Today at 1:00 pm, Keira Grace goes goes in for her first round of chemo. We feel like this is a turning point. The tests are over; the war begins. We have seen in our little girl a strength that defies her age, that defies her little body, that is going, with God's help, to defy this cancer . . . she is not giving in and neither are we.". . . april 21, 2007 "So far this round has been worse. She has thrown up multiple times, including twice this evening. She is also starting to lose her hair. Please pray for her. It is hard to put into words how it feels to hold this little girl while she cries and vomits in the middle of the night.". . . april 23, 2007 "She is not yet herself, but this afternoon, the pre-chemo Keira showed her face. After 3 days of fussiness and other more unpleasant experiences, it was a relief and a joy to see little Keira Grace waving her rattles around and trying for long periods of time with such a serious demeanor to open a pink plastic egg. That is the little girl who regularly owned our home prior to her chemo treatments, the girl who almost got lost under the weight of toxic chemicals they had to pump into her little body.". . . may 10, 2007 "For everyone who has supported us, we love you and we thank you and we need you and we want you to know that our daughter means more to us than anything in this world and when you do something for her, you do something for us that we will never be able to fully thank you for, never be able to really express how much it means to us. Thank you for helping us take care of our baby. ". . . may 20, 2007 "It is not about answers for us. We do not know God's plan, but we know God. And when we fall, He is there. In these days while we wait for her last round, while we wait for those scans that come in June, while we wait to hear whether or not she has been cured, all we can do is believe in an almighty, good God and trust that He is going through this with us. Jesus called it faith like a child. I have seen that faith. I want that faith. It is what will sustain us. ". . . June 1, 2007 "Keira did very well today. We should be used to it by now, but we are still in awe of our 13 month old who takes in stride what would make either of us fall apart.. . . june 22, 2007 "Today, things have changed. This war is not over, but the field of battle looks very different now. Today we experienced a victory that we prayed for and believed for and rejoiced knowing that others prayed along with us. The results of the MIBG scan came back today. I can hardly type those results out because part of me still does not believe it. There is good improvement in the size of the main tumor in her chest, and there is no sign of the cancer in her bones.". . . july 9, 2007 "Finally the test results came today . . . We proceed with surgery tomorrow, as planned. We are nervous about this. Even though we have discussed this with both the surgeon and the oncologist to the point that I'm sure both of them feel exhausted, we still don't know what to expect. We pray that God will guide the surgeon's hands to get all of the tumor, without injuring any nerves . . . We have been asked to trust God in ways that we never thought possible over the past few months. Tomorrow we will be asked to do this again.". . . july 20, 2007 "About 12:00 pm last night, Keira got very restless. Normally, she will put herself back to sleep, but not last night. We had to get up with her and hold her and rock her and it still took a long time to settle her down. She then woke up again around 3:00. This time, she had a fever of 101.5. For cancer patients that means a trip to the ER. So, about 4:00 am, we took Keira to Children's. We have been so blessed that this hasn't happened before. ". . . august 3, 2007 "Keira's doctors called us today and told us that the urine tests were essentially unchanged and still normal. Combined with the fact that her scans showed that the tumor in her chest hasn't changed, they feel comfortable continuing to watch her. We will go back in a month to repeat both the CT and the urine tests and make sure that they continue to be stable. We are grateful for this news, and we hope and pray that her tests in a month will show similar results. "Today 8/31/2007 -- It is amazing to look back on the past 6 (yes 6) months. After all this time, I can palpably feel the fear and pain we felt when we learned of Keira's diagnosis. Tonight we found out that Keira's tumor continues to shrink - while she is off treatment. This is incredibly encouraging to us and means that Keira gets to continue to be off chemo. Neuroblastoma is a very unpredictable disease and children have had recurrances after years of being disease free, however this is not the usual pattern. The fact that Keira's tumor is shrinking makes it very likely that it will continue to shrink and that our wonderful precious daughter will get to live a normal life. We are so grateful for these results. We know that Keira will never be truly out of the woods, but we feel that we have just entered a clearing in the trees. We'll take it!Right now our little girl is sleeping peacefully, and tonight we will sleep in a kind of peace we have not known for a long time.Thank you for your prayers. Thank you for remembering us. Keira's doctors have been wonderful. God has been exceedingly faithful and good to us.





Keira continues to have check up scans and from last i heard, she continues to do so well and thrive and remain to have no evidence of disease

I wanted to thank you Erin, Jason and Keira for always being there for us, all your support and prayers for Deqlan. For answering the thousands of questions i had, for teaching me how amazing and how strong our Faith is and for shining hope on the journey we went through. We hope you are well, and please let us know how you are doing? Please give loads of hugs to Keira, prayers , hugs and love always, from all of us



You can visit Keira's blog to read about her incredible journey - the blog is no longer updated, but you can read through the amazing faith and strength this family has and their trust in Our Lord which is such an amazing example to us all

http://www.keirabo.blogspot.com/



Reminder busy boxes

Morning Everyone!!

Just a little reminder about a great incentive currently being run by the crew at ALL HANDS ON DEC FRIENDS, BUSY BOXES.

Please see if you can assist with any of the following items that you have no use for anymore, or would like to sponsor, and please get to us by 9 October latest, as packing day is 10 October. What is really needed at the moment is scissors and glue sticks, but all and any items we can fill the boxes with will be loved and put to wonderful use

Heres a reminder of all the details:


Hello all. Hope you are well.
Our newest project for All Hands On Dec Friends is BUSY BOXES!! And we need help collecting odds
and ends to make the BUSY BOXES to hand out to the little people in the oncology wards at the local
government hospitals. We are going to put together a wonderful collection of stuff to keep the hands
busy to pass the time while in those beds waiting for treatment and for healing. Please shout when you
have something for us, and we will arrange collection or delivery at a convenient place. Please pass to
all your work colleagues, cos many hands do make light work, and we will be amazed at what we can dig
up at home. Once again, this is inspired by our bestest and most precious angel Declan, who has and
continues to ripple it far and wide :-)
We need the following please –
Ice-cream containers, (that everything will go into) - we all have these in our homes and wish we could
put all of them to good use... ;-)
Website cutouts (www.familyfun.com)
Craft foam
Beads and buttons
Scissors
String
Colouring in pages or books
Stickers
Notebooks
Magazine pages for kids to cut-out
Elastic bands
Glitter
Scrapbooking bits and pieces
Play dough
Scraps of fabric
Pieces of pretty paper and cardboard
Pieces of ribbon
Pretty little jewellery boxes that could be decorated
Small paint sets
Something that can be painted - eg - small wooden picture frames / plaster of paris type
Pritt-type glue sticks, or any glue in fact that will be good for craft type work
Balloons
Small toys
Crayons / pencil / wax / khoki
Anything else that you can think of that is nice to while away time with something special that you can
find for the littler people cos they cannot use scissors etc, and we would love to give them something
special.

Sunday, September 27, 2009

SURVIVOR - ISABELLA UGARTE, USA

Isabella on her first day as a first grader



Hello Deqlans prayer army - today , let me introduce you to this gorgeous little lady, Isabella





Isabella was diagnosed with neuroblastoma 8 Novemeber 2004, her story unfolds:





Hi, my name is Isabella and I am 2 years old. I found out on November 8th that I have stage 3, intermediate risk Neuroblastoma. Here is some information on "NB" : Neuroblastoma is the most common tumor in infants younger than 1 year of age and a common solid tumor of childhood. Most children are diagnosed by age 2 and more than 70 percent have widespread disease at the time of diagnosis. Neuroblastoma tumors originate from neural crest cells (called neuroblasts) in the sympathetic nervous system (nerve tissues), which runs from the base of the neck to the tailbone. Tumors can appear anywhere along this chain, but are most commonly found in the chest or near the adrenal glands, which are located on top of the kidneys.





Isabella was diagnosed with neuroblastoma on November 8, 2004. When she was 18 months old. On November 9, 2004 she underwent surgery to biopsy the tumor, aspirate bone marrow from both of her hips and to place a central line in her chest. Within one week of her diagnosis she began chemotherapy treatments.





Isabella received four rounds of chemotherapy every 21 days.





On February 11, 2005, she had a MRI that showed the tumor had only shrunk about .04 cm and surgery was not an option at the time. We have been continuing on with our chemotherapy and we just had our 7th round March 28th, 29th, and 30th. She was hit with an infection on April 2nd and was in the hospital till April 15th. they thought the infection was in the actual line in her broviac, so they removed it, but bacteria still showed up in their blood tests. When they sent us home, Isabella was put on antibiotics that must be given through her IV port in her arm every 6 hours. We ended up giving her the antibiotics for a while and her infection came back yet again.





So instead of prolonging her last chemo treatment the doctors decided to see if her tumor had shrunk enough to be removed. She had a MRI that showed it had shrunk a lot but the surgeon felt he could remove it. On May 2nd 2005 Isabella had surgery to remove her tumor. She was in the surgery for 6 hours (when the surgeon tols us 3) but she came out of it okay and we spent 3 days in ICU and another day in the regular oncology wing before we were sent home. Isabella has been cancer free since! For a full background, feel free to read the journal history.





http://www.caringbridge.org/az/isabellaroseugarte/





and on the family blogspot



http://isabellaroseugarte.blogspot.com/


Isabella celebrated her 6th birthday on 29th of April and has been NED for over 4 years now, Praise Our Lord! Isabella has the most wonderful, supportive and caring mom and dad, and gorgeous little brother! Michelle, her mommy continues to do so much to create awareness and get everyone she possibly can involved in supporting the cure for childhood cancer! Isabella, we continue to follow you and your lovely families journey to health and we continue to celebrate and pray that you will remain NED always and forever! God Bless and hugs and love from us all here in South Africa!

Saturday, September 26, 2009

ANGEL - KEAGAN ALBERTS, SOUTH AFRICA




Only a few short days of Keagan turned 4, he was called home by Our Heavenly Father




We first met Keagan at Dr De Jagers offices during Deqlans treatment, and i will always remember him as the spunky boy who enjoyed flings during chemotherapy. i Was also amazed at his amazing vocabulary when he was so so tiny. His mom and dad where always at his side during treatment and always tried to entertain and be so positive around Keagan




From Keagans Face book webpage: He was diagnosed with Leukemia at 21 months. Since then he has been undergoing chemotherapy regularly. At some stages it had reached a point where he had been in remission, still going for tests though to make sure that this was maintained. His parents and family are and will be forever greatful for all prayers however it has come to this point where these prayers are now more needed than before for this little being! No child deserves to suffer so much pain! I know that deep down God is with him and has been and will always be. He will be turing 4 in the month of June. PLEASE PRAY THAT HE GETS HEALED!!!




07/05/09"After more bloodtests, his white bloodcell count has almost doubled, which means that the cancer has spread. His doctor expects that this will normalise after one or two more treatments, but that's all it is: an expectation and not a guarantee. I am hanging on by hope and faith, by God and His promises in the bible. I choose to believe in God's report and not in the doctor's report, or the report of the blood test. Please, pray for little Keagan."




25/05/09"The past 3 weeks have been absolute turmoil and very distressing, yet at the same time we have received strength from our Almighty God to face the challenges, and we received MIRACLES TOO!!!I'll briefly summarise what has happened in the past few weeks: I mentioned earlier that we had decided to try alternate treatment before going ahead with the stemcell transplant, which is our "last chance". The alternate methods were not successful and on Thursday, 7 May (about 3 weeks ago) we almost lost Keagan. We were informed by another doctor that IPT (insulin potentiation therapy) would be the answer and although Keagan could not be cured, the symptoms could be treated in this way. At the same time we were told that if his white blood cells continued to multiply at the rate that they did at that specific stage, Keagan had a week left to live. After hearing this devastating news, the "new" treatment (IPT) was administered. That was on said Thursday morning. Afterward we went home. Keagan was limp and slept on the way home. Once we arrived home he started to cry incessantly about stomach pain and headaches. At times he would drift off to sleep, but when he awoke the crying - and eventually screaming - would start all over again.I phoned friends and family, asking for them to come to our home to pray for our little boy. Keagan had a pungent smell on him from the treatment. Later that evening, and after everybody had come to pray for him, we rushed him to the hospital. He was in a critical state and his paediatrician feared kidney failure. On Friday morning his doctor told me that it was a miracle that Keagan had "made it" through the night and that his kidneys had suffered no damage. At the time I didn't fully understand what the doctor was saying. 2 days later, we had a discussion with the oncologist (we had obviously decided that IPT and "alternate" treatment was NOT the answer) so Keagan was back with his original doctor who had been treating him since he was diagnosed. He told us that Keagan was "busy dying" on that Thursday evening. Kidney failure seemed inevitable then, and the doctors had feared the worst. Only then did the reality really sink into my mind. Also, the cancer had spread to his liver, kidneys, spleen and a lumbar punch would be done to assess whether it had spread to the brain.The miracle is this: KEAGAN LIVED THROUGH THURSDAY NIGHT, 7 MAY. I know now that if God had wanted to take our son, He would have done so on that evening. Another miracle is that he suffered NO kidney damage whatsoever. The swelling in his abdomen as a result of enlarged organs (kidney, liver and spleen), has also subsided and doctors say that is a good sign. (These organs become enlarged and painful when the cancer has spread to them). Furthermore, Keagan had 99% blasts (cancer cells) throughout his body. Now, after chemotherapy, the blasts are too few to show up on blood tests. The lumbar punch has also yielded negative results, which means there is no cancer in the spinal fluid / brain. At this moment Keagan is in hospital again. His white blood cell count is very low, as well as his immune system. This is due to the chemo, but is a normal occurrence. An infection is being treated, although I await blood test results to prove what kind of infection it might be. He became feverish this afternoon (Sunday) with a temperature of above 38. He is being treated with antibiotics and is stable. A blood platelet transfusion will be given tomorrow (Monday) during the day.It is expected that Keagan will be in complete remission within the next month or two. After that we will be going to the Groote Schuur Hospital in Cape Town where he will undergo the stemcell transplant. Doctors say he has approximately a 30% success rate. I know and believe that he has 100% chance at success, because he is totally in God's loving hands. He, who loves this little boy more that I ever could.I cannot begin to explain how great our God is. He really listens to our pleas, prayers and He sees our sorrow, pain and tears. It is not His will for these things to happen, but He most definately carries us through the challenging events that happen in our daily lives. So often we pray and plead to God to help us, yet at the same time our thoughts and minds are sometimes distracted by the negativity around us. I have found that the more I pray and try to stay focused on God, the more distractions present themselves. They come in small ways and big ways, but that just makes me pray more fervently, more often, more intensely. Satan will always try to find some way to blind you or to make you loose faith, hope and belief. But he can only do that if you allow him to. I choose to keep my mind, heart and focus on God our creator. He is in control, always has been and always will be. Again I want to thank you all for your continued prayers and thoughts for our son, and also for us as a family. Words cannot express my gratitude. I am so thankful that there are so many kind, loving and caring people who come together in prayer before God, as brothers and sisters in Christ. Thank you for your e-mails, sms's, phone calls, and so forth. You have no idea how much it means to me, and it makes me realise all the more that we are not alone in this situation. Thank you for sharing our burden, and for being there to comfort us in all the ways that each of you do. A million times: THANK YOU!!May God bless each and every single person out there, may He guide you, protect you and keep you safe in the palm of His hand."With all my loveShireen




02/06/09Dear family and friends,"I hope that you are all still doing well? Just some good news I wanted to share with you:I explained sometime earlier that Keagan has to undergo the stemcell transplant - stemcells collected from my baby (Reuben) at birth, should they ever be needed. They were sent to Belgium where they are stored.About 2 weeks ago, Reuben had to undergo blood tests to see whether he would in fact be a suitable donor for Keagan. If not, we would have had to start the search for someone else - BUT - we received the results from our oncologist yesterday afternoon: THE STEMCELLS ARE A 100% MATCH!!!!!! I cry tears of joy and my heart feels as though it wants to jump from my chest with happiness and gratitude. I sighed a huge sigh of relief because even though I had a very strong feeling that they would be compatible, I did not think they would be a 100%!!! But with God ALL THINGS ARE 100%. God does not give half-heartedly, nor does He only give 80 or 90%. He is God our Father, we are His children. As parents we also give our children 100% of ourselves, so how could we ever think that God - who is Almighty - would not do the same for us? Praise our Lord, and all glory be to God.We should be on our way to Cape Town shortly for the stemcell transplant to take place, if by God's mercy Keagan should be in complete remission within the next 2-3 weeks. If Keagan is not in remission, then further chemotherapy will have to be given to try to get him into a state of complete remission (remission means that the cancer cannot be detected any longer). Once that has been achieved, we will go to Cape Town for 9 months as this is the period of time for a stemcell transplant, from the very beginning to the very end. Once we are back home in Pretoria, Keagan will have to go for tests for the rest of his life to ensure that the disease has not returned. So on that note, I have to further put my trust and faith in God so that neither Keagan OR Reuben will ever be attacked by any serious or life-threatening disease. They are in God's healing, loving hands where He loves them more than I ever could.May God bless you all - wonderful people! How blessed my family and I are to have so many people pray for little Keagan, and also for the rest of us. Even though there are so many of you whom I have never met, and who I don't even know, I feel a deep warmth and a Christian love in my heart for you. I hope that maybe one day, I will be able to meet some of you (at least), so that I may give you a big 'thank you' hug."All my love and gratitude:Shireen




Unfortunately Keagan was still not in remission beginning June, so the stem cell transplant could not take place.




He unfortunately got a severe infection and never recovered from it - on the 28th of june, Keagan went to be with Jesus.




I wanted to end this post with the last post Shereen did on her beautiful courageous boy:




31/08/09Dearest friends and familyGood day to you all! I trust that you are all doing well on this bright Monday morning...I have something that I desperately want to share with you all, although there are some family members with whom I have already shared this with verbally. Nevertheless, here it is:The last conversation I had with my little boy, Keagan, before he went into a coma, was on Thursday night 25 June, at 10:00 pm. Both his eyes were swollen shut due to the infection he had, and in truth he had been 'blind' since the previous morning. His eyes could not open, and little did I know that I would never look into his big, beautiful brown eyes again. Keagan and I were lying in his hospital bed. At 10:00 pm he asked me for his 'chippies', and when I asked him what flavour he said "not the ghost-pops". "Salt and vinegar then?", I asked (his other favourite). He said yes, so I reached into the bedside table's drawer and got his chips. As I was opening the packet he groped in the darkness to reach the packet of chips, and I took his little hand and helped him to touch the packet that I was holding in my hand. He said "Show me my chippies", and at first I didn't know what to say to him, how to explain that he could not see. So all I said was "you can't see your chippies because your eyes are swollen shut, my boy. Mommy will help you". I took out one chip and placed it in his hand. He was very shaky and struggled a bit to put it into his mouth, so I took his hand again and helped him to reach his mouth. He had 3 more small bites which I fed him, asked for some colddrink which I gave him, and then he said 'Mmm, that's nice, mmm". That was the last time I ever heard his little voice...The lesson I learned from Keagan - in those few moments - is too precious not to share with you all. It is a lesson I will always remember, and I thank our Almighty God that He inspired the insight I had gained from that incident.As I said above, Keagan's eyes were swollen shut from the infection he had. He never opened his eyes again once they had become shut. He never once asked me "WHY" his eyes were shut, "WHY" he couldn't see, and he never cried because he had gone 'blind' in those last few days. Maybe he was just happy knowing that I was there beside him, as always. In his darkest moments (literally and figuratively) he trusted in me, his mother. Even when he couldn't see his chips, - and the only explanation I offered was "your eyes are swollen shut" -, he trusted me to take his hand and to lead him, to help him, without questioning me, without demanding an explanation. He knew that I would give him what he asked for even though he couldn't see me with his eyes. If I had to explain to Keagan in detail the reason why his eyes were shut, he wouldn't have understood a word of it. He was only 4 years old, and how much medical terminology does a 4-year old understand? Not much I'd say, if anything at all! So I offered the only explanation that his 4-year old mind could understand, and he was content with what I said. I also remembering thinking how mature he was - in many ways - for such a small child.God is our Heavenly Father. We can't see Him with our eyes, but we do know that He is there beside us. Our eyes are often 'swollen shut', and we don't see what lies beyond. We question, we doubt, we become angry or bitter at the things we don't understand. We are often scared, too. Sometimes people are angry at God, other times people start to rebel against what they don't understand. I often say that if God could sit down next to me in person, and explain in detail why all of this had happened, then I doubt if I would really be able to understand any of it (as we humans have limited thinking capacity because we are not almighty). So let's just trust in God while our eyes cannot see, and our minds cannot fully comprehend the things in and of life. Let us allow God to take us by the hand and to lead us. And when we get 'shaky' and we struggle a bit, God will show us the right way, if we allow Him to. We must always remember that God is the 'parent' and we are the 'children' - His children. Most of us are parents and we have children, and you know how much you love your child, right? How much more, then, does He not love us, since He is Almighty.I really hope that today you may gain something from this. Eleanor Roosevelt once said "The future belongs to those who believe in the beauty of their dreams", and that is a lovely saying. But I want to say "The future belongs to those who believe in the beauty of God".God bless you all.Christian love,Shireen




How brave and how honest, how heartsore, how inspiring. Keagan will always remain in our thoughts and prayers and for you, the rest of his amazing family, God bless and love and support

Happy Birthday Linz

Dear Linz
A very very Happy Birthday to you and many many more!
Although you are so far from us, you always will have such a special place in our hearts! We hope you have a stunning day full of love and laughter and great memories!
Stay the lovely person you are, and may you continue enjoying being such a wonderful mommy to Paige! You are truly blessed!
May the year ahead open many doors and oppurtunities for you!
God Bless, lots of love
Mark Samm Deqlan Logan
Dee & Bev
Conrad , Megs and Keaton

Friday, September 25, 2009

Happy 2nd Birthday Hannah!!!


To a very sweet little girl, Hannah!


Happy Happy Birthday for you today and many many more!


We hope you have a wonderful day full of cake and balloons and laughs and hugs


Hope you are having a lovely time in Portugal and hope we get to see you soon in South Africa!


Lots of love to you and your brother Jayden and your Mommy and Daddy, stay as cute as you are


God Bless, lots of love

Mark Samm Deqlan Logan

SURVIVOR - ADRIAN AU, CANADA

Gorgeous Adrian today
Adrian with his wonderful Papa and Mama

Adrian celebrating his 3rd birthday, another Thomas fan, hooray!

Adrian during treatment
Another cutie pie, and another family so very very close to our hearts.

Adrian and his mommy and daddy lived in Canada. When he was just a few months old, they travelled to Hong Kong to go and visit some family. It was during this trip, that Adrian was diagnosed with stage 4 neuroblastoma, n myc amplified.

He was submitted to the Queen Mary Hospital in Hong Kong on Feb 12, 2007 (2 days after we arrived Hong Kong for vacation!) and has since had 6 rounds of chemo, 2 big surgeries to remove his tumor, radiation, 7 rounds of 3F8 Monoclonal Antibody Therapy and an Autologous Cord Blood Transplant in Dec 07.

In Adrians case, he had his own stem cells transfused back to him to rebuild his blood and marrow that was damaged from the intensive chemotherapy treatments.
All the follow up scans and urine and blood results continue to show that Adrian remains NED Praise Our Lord.
Adrian also experienced some delays in certain areas of development , and had some speech , occupational and other therapies to assess where he was at and what excercises could be done to help him reach his full potential. He definitely made great improvements and even attended a nursery school in Hong Kong which he came to love and enjoy!
On 28 July 2009 Adrian and his parents left Hong Kong and flew back home to Toronto in Canada, which they are now settling into !
Adrians follow ups are now being down at Sick Kids hospital in Canada. Adrian has just had a follow up ct scan on the 22nd of September, and they recieved results yesterday, and we trust and look forward to the latest update that Adrian remains NED and shall always and forever!
Thank you for all the love and support and prayers you send for Deqlan and our family, and know that ours is there for you all, especially little Adrian. Lots of love and hugs from South Africa

Thursday, September 24, 2009

ANGEL - KATIE PILKINGTON, USA


This wasnt the post i was planning for today, but was so heartsore to wake up and learn of another angel who went home to Our Father in heaven last night. I dedicate todays post in her loving memory


Our prayers and thoughts are with Katie Pilkington and her family and we pray for Our Lord to guide you, hold you up, comfort you , show you His plans




In Dec 2005, at 15 months of age, Katie was diagnosed with stage 3, n myc amplified neuroblastoma. Her treatment was completed in April 2007, but sadly she relapsed in July 2008.

Rest in peace sweet girl

Wednesday, September 23, 2009

A VERY busy weekend!

Mr and Mrs Young dancing their first dance. We were honored to go to the wedding of such special people that found such happiness and love in each other! Congrats Coreen and Grant , and many many more happy healthy years together! It was a stunning wedding, Coreen, you looked like a real life princess, and Grant very dashing indeed!
A lovely photo of Wes and Elriza
Some of the stunning flowers, was so so pretty!
I love this photo, Mark making Meggie and me laugh
Me with the beautiful bride, Coreen, she really looked breathtaking. I asked Coreen, how she managed to be so happy and jovial and full of life ALL THE TIME and she told me its because she is so blessed! I have learnt so much from that and i hope my happiness and gratefulness can also be for the world to see!
Mark, Grant and Conrad - Grant made the most beautiful speech that had lots of people crying ( not only the afrikaans ones Grant!)

Dale with little Cole in his tux! He looked so beautiful and was as good as gold!
The table - but the photos dont do it justice the pink and green was so beautiful!

The table we sat at - FAITH! how beautiful, we were so excited by this!
The bridal party with Coreens sisters and Grants brothers
Cutting the cake
For the first time,Mr and Mrs Young
Exchanging rings ( Hi Loren!)




It was also Nats Birthday on saturday so i went past to say a quick hello! Deqlan fell asleep on the way there so Dada took him home.We had a tough morning with Deqlan, he was so frustrated and threw tantrum after tantrum, i felt so bad, bad had to say no to certain things that Deqlan wanted and he was just so upset by my no's, definitely more then usual. I read that these tantrums are not just behaviours, they are communication. We working on prevention instead of intervention!
Nix holding her gorgeous neice Abigail
Aunty Monica, such a proud granny!
Nix and Josh ! Look how he has grown, he is so peaceful and content and beautiful!
Carol and Abi - Carol just arrived from London and was meeting all the small kids for the first time!

A day celebrating Mom

We took Nanna to a lovely little restaurant called The Cornish Kettle in Irene for her Birthday breakfast - we had a lovely time, especially Deqlan and Keaton! He was overjoyed, and so was I, that there was a fountain, that he could throw stones into!
Deqlan is a real ladies man ( you will see from his birthday party photos i am sure to post soon!) This is Portia - he ran up to her about ten times , giving her a hug and running away laughing! Again and again - it was to beautiful to see! Who says kids on the spectrum dont pay attention to other kids ? He also picked up a little doll and took it to Portia to play with! Nanna and I are so very very proud of this fantastic social interaction, imitation and iniatiation of play!!

Nanna. Megs and Keaton - Keaton was asleep when we got there, but soon got into the swing of things and loved feeding the birds!

Peek a boo!
Nanna and Deqlan enjoying walking over the tyres

Nanna, me and Deqlan!
A precious moment...Deqlan loves the new vodacom ad, with the song 'all the single ladies' by Beyonce. Nanna has recorded the ad on her phone, and whenever she plays it to Deqlan we get the biggest smile and laugh and he loves wathcing Nanna sing the words!
Nanna opening her presents - she loved this one, we made her NANNA'S BOX OF PRAYERS and we put photos of the kids inside, with different bible verses that had the number 22 in them
Nanna, Deqlan and Keaton blowing her candles out. Megs arranged for some beautiful cupcakes to be made, with the words MOM, NANNA, FAITH, HOPE, LOVE, JOY
The morning started off with Nanna and her boys playing with the water balloons - this is their favorite activity at the moment!
To the most amazing Mom and Nanna, Happy Birthday, we love you so very much, we are so blessed to have you as our guardian angel on earth, we hope you had a lovely day! You are our treasure!!



WARRIOR - ILA JEAN, NEW YORK, USA

Ila with her sister Monica and brother Howie
Cute as a button Ila

What a cutie Pie! Meet Ila Jean from New York , Usa!




Background Story
On August 28, 2006, Ila Jean was admitted to Albany Med Childrens Hospital with a mass in her abdomen found by CT scan that morning at St. Clare's. Scans that week showed disease in her femurs, right hip bone, L4 vertebrae, sphenoid bone, left ocupit(back of skull), a large tumor in her abdomen filling her entire right side and crossing over to the left side and a tumor in her sphenoid sinus cavity. Her tumor was biopsied on 8/30/06 and was found to be stage IV Neuroblastoma with n-myc amplification and poor shimada. Her bone marrows were shown to be heavily involved and her central line was placed.


She started her first round of chemo the next day. After round 3 she had her stem cells harvested. After round 5 her abdomenal tumor was removed and a g-tube was placed. After round 6 her sinus tumor was removed then she had round 7 of chemo. Scans were then done to prepare for bone marrow transplant. Apprehensive about the procedure, we looked into a trial at Sloan Kettering. At that point we decided not to do transplant and to go straight to 3f8 antibody treatment at Sloan.


Scans after round 7 still showed disease present in her hip, skull and spine as well as bone marrow, so Sloan added the 8th round of chemo. Scans again showed disease present on our first trip to Sloan in her skull, hip, bone marrow and a new spot in her upper right arm.


The doctors were discouraged and round 9 and 10 were added as outpatient along with 14 days of radiation to her right hip. Scans again showed disease, however much improved. Skull slightly showing and her hip and bone marrow. The arm was now clear.


The doctors were now very encouraged and added the 11th round of high dose inpatient chemo. Scans again showed improvement so the doctors added round 12 of chemo.


We started 3f8 treatment at Sloan on 8/20/07. After getting her first round, she was HAMA positive. A week later she was negative and started her second round of 3f8. The 2nd round was stopped when she became HAMA positive again. Ila had radaition to her hip, abdomen and skull from October 16th to the 25th.


She was put back on chemo as maintenance to prevent her from relapsing until her HAMA level came back down. After 4 more rounds of chemo (16 in all), our prayers were answered!




On February 7, 2008 Ila was declared NED!! She was also HAMA negative.




She finished 3 more rounds of low dose chemo bringing the grand total to 19 rounds then went back for scans which were clear in April 2008.




She was still HAMA negative at that point and remained that way getting 2 more rounds of 3f8 with GMCSF. She also completed 2 rounds of Accutane.




On July 1, 2008, Ila is once again HAMA positive. On August 4, 2008, she was put back on chemo to try to lower her HAMA. After 2 rounds she was then put on a new trial using Rituxan with Cytoxin to lower HAMA. She then came home for round 22 of chemo. Two weeks later she was HAMA negative and received her 3rd round of 3f8 in which she experienced her worst pain to date including 2 trips to the Urgent care for fevers with one admit to the hospital.




To our surprise she was HAMA positive 2 weeks later and she finished her 23rd round of chemo. Scans in January 2009 were clear. She was also HAMA negative and finished her 4th round of 3f8 on January 23rd.




Ila was HAMA positive again and went back on Accutane. For the first time, Ila went 3 months between scans without Chemo and the week of April 13, 2009 scans were clear. Still HAMA positive, she did Rituxan again in May 2009. She had round 5 of 3f8 June 28, 2009.


Scans the next week are still clear.
Ila has had:
2 ultrasounds
19 CT scans
3 bone scans
16 MIBG scans
7 MRI's
4 central lines
2 PICC line
1 port a cath
15 Bone marrow biopsies/aspirates
14 xrays
7 ECHO cardiograms
28 doses of radiation to her right hip
14 doses of radiation to her skull and abdomen
23 rounds of chemotherapy
2 rounds 3f8 antibody w/glucan
5 rounds 3f8 antibody w/GMCSF
6 rounds Accutane2 rounds Rituxan/Cytoxin
10/31/06 - stem cell harvest
12/18/06 - abdomenal tumor resection & g-tube placed
1/18/07 - sinus tumor resection


7/9/09 - repair of gastric fistula( from g-tube removal)



Along with numerous blood transfusions and infections and countless trips to the clinic. Ila spent close to 100 days in the hopsital by 12/31/06 and has been in roughly 180 days inpatient to date. So far she has damage to her right optic nerve from the sinus tumor but 7/09 visit shows some signs of improvement. So far, her heart is showing no signs of any damage from the chemo. Her hearing exam in March 2008, showed high frequency hearing loss and she now wears hearing aids. She has a severe speech delay and is in speech therapy as well as preschool.




Ila remains NED and is continuing with her 3f8 treatments . Next set of scans is due middle of october and we ask you all to lift Ila up in prayer that she continues to remain NED and that she can recieve more rounds of 3f8 to chew up any cells that shouldnt be in her little body.




Ila has such a great and supportive family, and a very very busy Mommy who is studing at the moment while looking after her 3 gorgeous kids! Jenny, we thank you to for all the awarness you are creating, all the fundraisers you speak of, all the initiatives you make as aware of - thank yoyu! We wish you all the very best with your studying Jenny, hope you continue to enjoy it and hope you continue to get such fantastic results. Ila, stay as gorgeous as you are - i love reading your mommies stories about you and all the tricks and adventures you get up to - your pictures make us smile and your beautiful smile warms our hearts! Prayers, support, hugs and love always, praying for fantastic scan results for you in October and for you to remain NED always and forever!!!

Go and vist Ila and her family at http://www.caringbridge.org/visit/ILAJEAN


For those of you who dont know, i thought i would include a little information on what 3f8 antibody treatment is all about

What is 3F8?
3F8 is the name of a substance called a monoclonal antibody. It attaches to GD2, which is a marker on the surface of neuroblastoma cells. 3F8 was produced by white blood cells of mice, and it must be carefully prepared for human use. 3F8 is part of our standard treatment for high-risk neuroblastoma and is only available at Memorial Sloan-Kettering.
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3. How does 3F8 work?
When 3F8 is injected into the bloodstream, it travels through the body until it attaches to the marker GD2 that is present on all neuroblastoma cells. The attachment of 3F8 to a neuroblastoma cell signals the patient's own immune system (e.g. the white blood cells) to treat neuroblastoma cells as foreign. In other words, the 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them. The treatment is effective even when a patient's immune system has been weakened by chemotherapy treatments because chemotherapy does not affect the part of the immune system that responds to 3F8 antibodies. Over time, as the body's immune system becomes stronger, 3F8 treatments may help the body learn to fight tumors on its own.
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4. How do we know 3F8 has reached neuroblastoma cells in patients?
When 3F8 is injected into the body, we attach a radioactive isotope called 131-iodine (131I) or 124-iodine (124I). A gamma camera or a PET scanner is then used to scan the patient's body, allowing us to see radioactivity (from the radioactive iodine) in areas with neuroblastoma, but not in parts of the body in which neuroblastoma cells are not present.
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5. How long have 3F8 treatments been available?
Since 1987, over 30,000 infusions of 3F8 have been safely used in more than 500 patients. During this time, we have continued to make improvements to the effectiveness of 3F8 in killing neuroblastoma.
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How is 3F8 administered?
3F8 is given intravenously through a Broviac, Hickman, MediPort, or peripheral line (all means of injecting substances into the bloodstream) on an outpatient basis. When being treated with 3F8, patients usually need to be in the clinic for about three hours. This includes time for giving medicines to prevent possible side effects, the 30-minute 3F8 treatment, and one to two hours to monitor the patient for side effects. 3F8 treatment is provided in one- or two-week cycles.
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9. How long will a patient need to be treated with 3F8?
3F8 treatment is provided in what are referred to as rounds or cycles of one- or two-week periods of daily infusions (except weekends), approximately three weeks off in between rounds. The number of rounds of 3F8 treatment will vary depending upon the protocol, but typically patients will receive at least two to four rounds. The primary consideration in determining the length of 3F8 treatment is that we want patients to receive at least 400 mg/m2 of 3F8 before developing human anti-mouse antibodies (HAMA) to the 3F8. See below for more information about HAMA.
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10. What are the common side effects of 3F8?
Pain is the main side effect. All patients have pain. The second most common side effect is rash (hives with itching), which is an allergic reaction. Pain can lead to a fast pulse (rapid heart rate) and sometimes causes high blood pressure for a short period. Less-common side effects include fever, vomiting, and diarrhea. These problems can usually be taken care of in the outpatient clinic, but sometimes a patient needs to be admitted to the hospital for an overnight stay. In the neuroblastoma outpatient clinic at Memorial Sloan-Kettering, we routinely treat 10 to 12 patients a day with 3F8, and manage side effects of the treatment without much difficulty.
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11. Why does 3F8 cause pain?
3F8 attaches to GD2, which is present on some nerve cells as well as on neuroblastoma cells. When 3F8 attaches to a nerve cell, a message is sent to the brain, and the patient feels pain. The pain usually starts toward the middle or end of the daily 3F8 treatment and lasts a short time (usually from a few minutes up to an hour). Sometimes discomfort or minimal pain continues during the hours after the treatment. Medicines are used to prevent or control the pain (usually morphine or Dilaudid) and the allergic reactions (usually Benadryl or Vistaril). Ativan and Zofran are other medicines that can help. Patients who were treated with 3F8 beginning in 1986 have been followed, and to date, no permanent side effects on their nerves have appeared.
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12. What is HAMA?
HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from the white blood cells of a mouse. This means that 3F8 looks different from a human antibody, and thus patients will eventually form antibodies (HAMA) against 3F8. Once a patient has developed HAMA, 3F8 treatments no longer effective because the HAMA blocks the 3F8 from getting to neuroblastoma cells. If the patient has received the desired amount of 3F8 (see next question for further information) by the time HAMA has developed, then treatment with 3F8 will be discontinued. However, if the patient has not yet received the desired amount, it is possible that HAMA may recede, and in that case we can resume 3F8 treatments. We conduct a blood test for HAMA usually one to two weeks after each round of 3F8 infusions. Patients with HAMA usually do not have pain or other side effects from 3F8 treatment.
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13. Is HAMA good or bad?
HAMA is a positive sign in that it may mean the patient is developing an immune response against the neuroblastoma. However, when HAMA develops before the patient has received the usual 400 mg/m2 of 3F8 (two to four cycles), it may interrupt treatment. (As noted above, once HAMA is present, the 3F8 treatment is no longer effective.) Once HAMA has receded, treatment can resume. Most patients who have received chemotherapy only a short time before 3F8 treatment do not produce HAMA because part of their immune system is too suppressed. In these cases, 3F8 treatment will usually continue for up to two years. The aim of our protocols is to give repeated treatments with 3F8 until HAMA is made, because we believe that approach yields the best chances for cure. We continue to study HAMA to get a better understanding of how it may hurt or benefit patients in the long term.
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Tuesday, September 22, 2009

SURVIVOR - RUTH MERSBURGH, HAWAII, USA

Ruth in her race to heal gear www.racetoheal.com
Ruth and her crew at a canoe regatta

Praise Our Lord for another story of hope and courage and of a sweet little girl that continues to change the world by creating awareness and funds to lead us to the cure for all who fight neuroblastoma.


Ruth lives in beautiful Hawaii with her amazing family who all do so much to fight neuroblastoma.


Here is how Ruths journey started


On March 4, 2006 Ruth enter the hospital for testing. By March 11, 2006 Ruth was found to have Neuroblastoma, stage IV.
Ruth learned a new word at the young age of 4, cancer. She calls her cancer "lump".
June 30, 2006 Ruth had her primary tumor completly removed. Five hours later Ruth came out of the operation with no complaints. She stayed on her regular floor for four days and got discharged. Her doctors had told me that the operation she had is one of the most painful to recover from. Ruth did not fuss. She trusted in her Lord and Savior Jesus to help her along. Ruth has told us many times that Jesus places His healing hands on sick children. She got a break to recover, July 5, 2006 we flew home to Kona. Ruth had not been home since April. She only got to stay 4 days a home in April. July 17, 2006 we returned to Oahu to finish her last round of chemo. Starting August 7-17, 2006 Ruth will be doing all the testing we did back in March, CT scan, Bone scan, MIBG, heart and kidney scan, hearing test and Bone Marrow. After the results are in her doctors will decide if she will have another resection on the right neck nodes. Ruth did have a recection after Labor Day on the last bit of tumor on the left neck. Post surgery scans found another mass in the front of her neck. Ruth did two rounds of out patient chemo for five days each round. After the first round she was without the mass. We did a second round just to make sure. Bone Marrow Transplant Workup test found Ruth disease free. The autologus stem cell transplant will be on Nov. 3. Check in for the transplant is Oct. 26 for four days of super chemo, three days of rest taking us to Day 0 Nov. 3 the actual stem cell infusion day. Ruth will be in isolation until her blood counts recover. She will need to be on the island of Oahu for 100 days post transplant. After the transplant Ruth will have two weeks of radiation and then a biological theraphy. We beleive through many that have entered Ruth's life that God is healing Ruth. God has a purpose for everything. Continue to check her site and continue to pray for Ruth. The transplant went very well. Twelve days of radiation followed the transplant on her neck and chest tumors. After the 100 days on Oahu Ruth was realeased to go back home. Ruth now is on another study currently taking six rounds of Accutane, yes the acne medicine. July 2, 2007 she completed the Accutane, and had her week of testing. July 30, 2007 we are giving God all the glory for Ruth's new status of NED, no evidence of disease. Thank you for praying for Ruth to stay cancer free.


Ruth and her family continue to remain a part of so many projects, namely Locks of Love, Race to heal and many many canoe regattas! I believe that Ruth and her entire family love to canoe!


Latest update on Ruth is that the next round of check up scans is in October and she will be 3 years NED! Please pray for her continued NED status and for her family to continue making such a big difference! lots of hugs and love and of course prayers!!!

September is Childhood cancer awareness month

Hi All

Just wanted to share this little piece from 5 minutes for special needs - please continue to support and spread the word every way you possibly can!

God Bless and thank you love
Samm


5 Minutes for Special Needs
Childhood Cancer Awareness Month
Posted: 19 Sep 2009 04:00 AM PDT
Did you know that this month is Childhood Cancer Awareness month? Kids all over the world are suffering from cancer. Hospital floors are filled with children with bald heads, going through chemotherapy, bone marrow transplants, and surgeries as they literally fight for their lives. Before 2007, I had no idea. I knew it existed of course, but I didn't really GET it. SO many children… I didn't get it until April 16, 2007 when childhood cancer became a very real part of our lives. Our then 2 year old daughter, Kennedy, was diagnosed with Acute Myelogenous Leukemia.
I will never forget the day they handed us this HUGE book to read about "understanding your child's cancer", or the first time I saw the poisonous chemotherapy drip through the IV lines into a tube in her chest. I'll never forget crying as I changed her sheets on her hospital bed because they were covered in her beautiful blonde hair…
or giving birth to my youngest son only to carry him back to the myelosuppression unit where he would spend the first 6 months of his life…
While Kennedy went through chemo, we found ways to keep life interesting…
And then, after 6 long months…
Kennedy's treatment was over.
But we were one of the "lucky" ones… we watched so many families leave without their children… brokenhearted. We've been to more funerals for children than we can even comprehend, and our hearts have been torn apart for our new found friends, over and over and over. There is something so unnatural and wrong about saying goodbye to a child, about seeing a mother mourn for their son or daughter. It's so unfair. As I say over and over on my blog, cancer SUCKS.
Did you know?*Each school day, 46 children are diagnosed with cancer.
*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.
*One in 330 children will develop cancer by age 20.
*Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
*Cancer remains the #1 disease killer of America's children – more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
*In the U.S. almost 3,000 children do not survive cancer each year.
*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.
*Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.
*As a nation, we spend over $14 BILLION per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.
*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.
*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.
So what can you do?Wear GOLD for our kids!! When people ask who you're wearing gold for, TELL them!! It's for the thousands of children who have and are fighting childhood cancer EVERY day!
Go eat at Chili's on September 28th! They will be donating 100% of their profits to St. Jude's, a leader in Childhood Cancer Research.
Register at marrow.org and become a bone marrow donor! It's quick and painless and you could save someone's life!!
Donate blood as often as possible! Kids on chemo receive countless transfusions and blood is always in high demand!
Take a meal to your local Ronald McDonald House or children's hospital to give to a family there, it will be SO appreciated! Stick in a card just to make them smile! The days and nights are long, and anything to break them up is a welcome relief!
Most of all, just don't forget… Childhood Cancer Awareness should be EVERY day! Who do YOU wear gold for?
Renee