[This was posted on February 29, 2008. Dozens of you donated thousands of dollars to help save Max's life. Despite all the doctors' efforts, Max died on June 10, 2008. Since then, the money that was donated to Max has been put into a fund to help other children with cancer. You can scroll down to the bottom of your screen to see the latest updates on Max's family and how the money is now being used to help other children and their families. Thanks to all of you who have offered your help and support.]
I know that I have limited time, but there is one thing that I'd like to do that has nothing to do with my cancer, that I think you can help me with. So many of you have offered your help to me and my family. Now I'd like to ask your help for someone else.
I've come to learn of a four-year-old boy named Max who is here in Singapore from Ukraine for cancer treatment. I haven't met him myself, because I've been a bit preoccupied lately with my own situation. But I have several friends who know him and his family and are trying to help raise money for a stem cell transplant that could save his life. I believe they still need S$77,500 for his treatment.
He is undergoing chemotherapy now but will need the stem cell transplant around mid or end-April, depending on how he recovers from the chemo. The family needs to pay the cost of the transplant up front or the doctors will not operate and Max will be sent home.
I know this is just one boy and there are many others to save. I know that there may be more efficient ways to spend your charitable dollars -- perhaps the cost of this transplant could pay for vaccines for an entire village of children somewhere.
This past week, I've had dozens of e-mails from complete strangers all over the world offering me help that might extend my life. They don't know me; all they know is that I have two young children who need a mother. Not a special case, by any means.
But there is an entire network of people out there devoting their time and energy, and in some cases, I believe, risking their own heartache to help me and my family. I'm appealing to whatever it is that's driving you all to sacrifice your own comfort and security to open your hearts to us.
Be a cynic. Call this emotional blackmail, an egregious abuse of the "cancer card", an idealistic and emotion-driven waste of time and energy. I've thought through all that as well. But I'm going to risk alienating some of you and forget about my own pride to ask for help for this boy. Why? Because we can. Simple as that.
This fund-raising effort is being managed by Sean and Helena Wren, who are Australian expats here in Singapore. They know Max and his mother. They lost their own daughter to brain cancer when she was three years old, so they have their own reasons for wanting to help this boy.
You can contact Sean on +65 9789-9839 or e-mail him at sewren@cisco.com if you'd like to help or if you have any questions.
For more about Max, go to www.helpmax.h.com.ua. This site can be translated into English by clicking on the language box on the right hand side and then clicking the grey box below which means "set language".
For more about Sean and Helena Wren and their daughter's fight with cancer, go to www.jazzywren.com.
And here is a short video clip of Max.
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54 comments:
Shin, a couple of us have been talking about this request from you on how we can help Max raise money for his operation. Ideas are bounced around, but I was just wondering if anyone who reads Shin's blog would know of any artists in Singapore who may be in a situation of being able to donate a few pieces of their artworks for a word of mouth, email style auction/ in our circle of network, like within your condo? We could get at least $3k - $15K per work? Maybe more if we hit the normally higher nett worth individuals... ie bankers.
A charity auction of sort...
Just a thought really. Also, if a group of people have anything they want to auction off that is worth something, i.e I have a mobile phone worth $1K Escada limited Edition that I won at an event, and I will add $1K more to it, so someone needs to add $1K more to get the phone, and then all of a sudden we have $2K for Max, and the bidder gets the phone for his/her $1K? Or something like that? But on a mass scale. Anyway, any thoughts on the art auction, and let me know if anyone needs a mobile phone, I can send you a photo. Brand new. We can raise $2K just like that for Max.
Dear Shin, I am a friend of Maksim and his mother Halyna. Thank you so much for spreading the word. It's amazing what people can accomplish if we work together. I know we can find a way to give this boy a chance. Your blog has inspired me in many ways. Thank you! Natalia
Hi,
I know of one artist and will forward this blog to his wife. Hopefully thay can help.
Cheers
Mandy
I will donate a painting if you have an auction, I don't know who would pay $1K tough, I'm not famous yet.
I was also thinking maybe we should approach the doctors/surgeons who will be treating Max. Tug on the heart strings and get them to half their fees or do it for free!
I've heard of stories like this before. If we can get some media attention on this it would help.
Can't be any more help from where I am sorry.
Deb XXX
Wow. I know some very clever and kind people. Thanks so much, Mylinh. For once in my life, I'll let someone else take control and leave you to find the best way to raise money for Max. I'll concentrate on the things I can't outsource, and that's writing letters to my kids. I have decades of future parenting to squeeze into weeks. Talk about crunch time!
If you do have an auction, I have a number of things I've been meaning to sell or donate that I can add to your stash, including a brand-new GPS runner's watch and iPod+Nike distance measuring thingamagig. Plus some baby things, and other miscellaneous items. If anybody wants to come over and take inventory or take these things away, please do!
Hi Shin, Many thanks for taking the time to ask for help for Max, I know you are fighting a hard battle of your own. We have a long way to go in raising the funds but we will leave no stone unturned in trying to raise the money. Good luck with your fight, I am not a religious person either, but you were obviously put on this earth to leave a mark on people and you have certainly done that for me. Much love and respect Sean
Dear Shin, your request is truly gracious and most admirable! I will spread the word round to my friends and colleagues and hopefully we can raise some funds through them.
Mylinh, we have 2 large oil paintings from Europe (from Italy I think) which we think can be used to raise funds for Max. How do I get in touch with you?
Shin, Teresa here. Don't worry, we'll take care of Max. You take care of yourself, Josie, Toby and Tony.
I'll pop by on Monday with stuff for you and will take away and inventory the items for auction. Mylinh and I have been discussing how to do this via email. Most likely art auction would be a good idea. I have a painting to add to it too. I've posted a donation list for Max in my Pilates studio and will have a donor list up. I think we'll get there if we all chip in. I've also been in touch with Sean Wren. We'll make it happen, so rest assured. Max will get his treatment somehow. If a life can be saved with a little money, we'll make it happen. I'll also try to get in touch with the Straits Times to highlight Max's story.
Things do and can happen. You've defied odds so far - you've inspired the rest of us to do something that will make a difference!
Teresa
xx
Teresa, Mylinh, Evelyn, Mandy, Deb, and others who have written to me by e-mail rather than on this Blog...
I've read your comments on my Blog and am a bit stunned and weepy. I'm amazed at this kindness and generosity of heart.
I've been a cynic all my life, but these past few years, and especially lately, I've come to see a side of human nature that I never believed possible.
This is all the God that I need. Thank you so much.
Just wanted to share with you a video from Max's web site describing the poor medical care he received there. It was shot in Ukrainian by local television, which is helping raise money there. Even if you don't understand the language, you can get a feel for what this little boy and his family are all about.
Natalia
http://www.tochka.tv/topics/2008/01/03/chergova_likarska_pomilka
www.tochka.tv
/topics/2008/01/03/chergova_likarska_pomilka
Hi everyone,
Thank you so much for coming back with ideas and offers of donations and artworks, and even approaching the doctors to cut down their fees... Deb, if you and a few others could think of a way to do that with the surgeons, I will pull a few peopple together to discuss a venue and a date and time for when we can do this auction for Max. HJ had an idea about venue which I will come back to everyone on. The idea is that it should not cost, so people can use the money to bid for goods and artworks. We have a target of $77,000 by early April. What date exactly do the money need to come in? Thank you everyone, I think we might be onto something that could work. Teresa, your network at Sky would be great to tap into. I'll map out a plan and put together some tasks and fan them out so we get this up quickly. Looking at possible Masonic Club perhaps. A Thurs or Fri night the last week of March might be good, to enable more time for raising awareness. We need a holding place for all the goods donated, and someone to help with light refreshment, and pricing of goods, etc... and people to spread the words around.
Shin, we are doing this for the beautiful and brave little Max who is fighting for his life, and also for you, because of what you have come to mean and represent for so many of us.
Would welcome any other fundraising ideas as well, or things to add on to this idea of a charity auction.
You can reach me at mylinhc@gmail.com or mylinh.cheung@mercer.com.
Shin, rest up and don't worry about this OK. Spend time with the family and let us take care of Max.
Shin, this is really God's presence in your life. There is indeed love and kindness out there all around us. Just want to let you know that my friends have acknowledged and will write to Sean directly to help Max and get him the best treatment possible. We love you!
Hi, Michelle here. Shin's friend from Sydney. I have not yet entered a comment on Shin's blog. Not sure why! I guess I believe that Shin knows what I think and how I would react. But her point to me the other day was that others benefit from everyones blog contributions. Well I am not sure I have anything you will learn, but I do have something to post that I know we all agree on.
Shin has been my best friend for the past nine years. She has added an uncalculatable value to mine and my family's life. I couldn't possibly that into words.
She and my husband, Bren, brought up my two girls and Josie. The three kids had Bren and Shin as their first two parents. Tony and I were parents number three and four.
My girls talk about Shin every night. They have since the day we left SIngapore over two years ago, more so since the day she was diagnosed.
They have been sending her love across the sky-highways to Singapore, so diligently for two years. And again tonight. They told me that when you die and you have been good in your life, you get a star. They told me Auntie Shin will DEFINITELY get a star. She is in Singapore now but sometime she will be on a star reserved just for her because of how "good" she's been.
My kids adore Shin, Tony, Josie and Toby. Bren adores Shin, Tony, Josie and Toby. I adore them beyond human possibility.
I thank you all from the bottom of my heart for the love and commitment you have shown to Shin. I love how much you all love her and her family.
I have been lucky enough to spend most of this year in Singapore. I have seen first hand how all our love and help has impacted Shin. And raising money for Max is just a tiny portion of that.
What a wonderful world.
Dear all,
HJ, Steffi and I have just spent a couple of hours with Shin talking by the poolside.
I wanted to run the idea of this Auction event to raise money for Max by Shin before we go full steam ahead, and we realised after some discussions that the heart of Shin's concern is that Max is given the right treatment, although raising approx $80,000 is still a top priority. And because Max needs the money very soon, end of March, this month, that the most efficient way we can help Max is to donate money, directly to Sean Wren, details are posted on Shin's post.
To all Shin's friends and love ones who have been so quick to offer help and donations to the auction, thank you so much, but we won't need to continue the auction at this stage of timing. Please feel free to contribute however much you can, if you can by calling or emailing Sean.
To those who have thought about speaking with the doctors about cutting fees, I believe from Shin that this is not needed at the moment, as there are conversations happening not with the doctors, but with the hospitals that the doctors work with.
For those of you who have not seen Shin for a while, I can tell you that she is thinner than I had last seen her at Lunar New Year last month, but she said she has been eating, and ate really well all yesterday and today. She spoke with so much love about her hopes for Josie and Toby and Tony, and is so grateful and appreciative to everyone for the support. We will hear from Shin soon, when she gets the chance to post again on how she's doing.
Thanks everyone, and at Shin's request, direct funds, contribution to Sean Wren for Max.
Thank you!!!!
Crying is not my forte, it cannot be. But tonight I am weeping for a night not long ago, when I feasted on ginger and shark in some nameless restaurant in Singapore, as the guest of my sister Jennifer among her friends, Shin and Michelle.....I am sitting here in France, grateful, a little empty and wondering will Josie marry Sam? Seriously, they are such an obvious match???!!! He who was diagnosed with a terminal illness at birth and has made it through the rain and now is 5 years tall, 2ft wide and built like a steroid induced battleship! Surely Shin, it is only a matter of time before they meet and smile...............Susan, Jennifers older sister, she has made me say that!!!!!!!!!!! Much love and laughter, joy and madness from Le Pays Basque in France....Susan, Inigo, Max, Noah & Sam xxxxxxxx In Basque they say : Maite Zaitut.............xxxxxx
An Update on Max
I have just this minute come back from a meeting with Maksyms Oncologist. The situation is that Max has now had four courses of chemo over the last almost 12 months. The latest bone marrow biopsy still shows some degree of disease. The Dr now feels that the course of chemo Max is on is not working fully although there has been regression in the masses that were on Max’s scull. They do not want to do the Stem Cell Transplant until the Bone Marrow is clear of disease as there is a risk that the neuroblastoma cells will be taken up when the stem cell rescue is done.
The Dr has decided to change the chemo therapy drugs to a treatment that is used when normal treatment is failing. The Dr is saying that Max may now have to have between another two to five rounds of chemo before they will do the Stem Cell transplant. This will potentially add another $40,000 Singapore dollars to the amount we will need to raise, that now being around $120,000. Having said that there is a foundation here in Singapore that may be prepared give us the whole amount, the social worker with that organization called me today asking to speak to the family and for me to clear the way for her to speak the Max’s Oncologist, I did that tonight so she will call him tomorrow and she will also meet Max and his mother later in the week. I am not getting my hopes up but this sounds very positive.
I had a long chat with Max’s mother and explained to her how important it was that we get another opinion on the course of treatment and that there were potentially some major costs benefits as well, I now also have full access to all the hematology reports for the last few months, Halena has them all with her so I can get copies very easily. She has also agreed to go to the National University Hospital here in Singapore for a second opinion, as the hospital have indicated that we may be able to get certain forms of cost relief if Max gets treated there. I will try and arrange a visit there this week as Max is due to start another round of Chemo next week.
One of the things that is really concerning me is the conditions in which Max and Halena are living. They are paying $1200 a month for a tiny room with a bathroom, cooking facilities are communal outside in the court yards. They are at the mercy of the management of this place and the conditions are nothing short of disgusting. I wish there was some other way we could house them in better conditions and at a lower cost.
The following update on Max was e-mailed to everyone who has helped with fund-raising efforts so far. Sean and Helena Wren are the Australian couple organizing the fund-raising. Halena is Max's mother. Yes, the two women have the same name.
I have not attached the bank statement mentioned in the e-mail. Those of you who have donated should have already received this notice, along with the bank statement, from the Wrens. If you haven't, let me know and I'll forward them to you.
Thanks.
Hello Everyone
First of all let me say that Helena and I am absolutely blow away by the response from you all so far. As you can see by the Bank Statement we have generated $86,000 dollars to go towards Max’s treatment and there is more on the way, so I am hopeful that our goal of $120,000 will be met.
Max has had a tough couple of weeks after his last round of Chemo, with a couple of infections and blood transfusions, but his spirits are high. Max started the first of four to six rounds of a new chemo regime as the old chemo wasn’t working up to expectation. Then Max goes in for the Stem Cell Transplant.
So we have had a good start and we are keen to reach our goal. Halena, Max’s mother asked me to tell you all from her heart how grateful she is, that so many people that she doesn’t even know, have opened there hearts is such an amazing way. She was in tears on Friday night when I told her how much we have raised.
Now I guess its up to Max and the Dr’s to fight the hard battle to try and stop this insidious disease in its tracks.
If you need more information please feel free to contact myself or Helena. My number is +65 97899839 and Helena’s number is +65 90043590.
Very Best Regards
Sean and Helena
The following update was e-mailed by Sean Wren to donors on March 16. Sorry, could not include photos mentioned in the e-mail:
Hello Everyone.
Well Helena and I have just come back from a visit with Max and his mother Halena. The news is all good so far. Max underwent his first of up to six rounds of the new Chemotherapy treatments last Monday, heading towards the Stem Cell Transplant. He tolerated the chemo very well and his blood counts as of Friday were excellent. Max was in fine spirits tonight having driven my car around the car park 12 times.
Max will undergo a full MRI body scan next week to see if there is cancer anywhere else in his body. Then another round of chemo will start on the 22nd of March.
So far we have raised $115,000 dollars which is just extraordinary. To read the Bank Statement you will need this free software installed on your PC http://www.adobe.com/products/acrobat/readstep2.html?ogn=EN_US-gntray_dl_get_reader . The battle is not won yet and we have a long way to go, but at least, with all the help from people like you, Max has a decent chance at life.
I am attaching some pictures. The first pic from left to right is Helena (my wife), Halena (Max’s Mum), Max and me . The 2nd pic is of Max and me my car, third pic is in the waiting room of East Shore Hospital.
If you have any questions please don’t hesitate to ask.
Very Best Regards
Sean & Helena
The following update was e-mailed to donors on March 24:
Hello Everyone.
Max had a very good week. He is still recovering from the last round of chemo but he is in good spirits. Max and his mother are coming to our house every couple of days now and he loves watching Power Rangers and playing with my son Kale’s X-Box 360. Helena has been cooking him anything he wants and he has a good appetite at the moment.
We took Max to the hospital this morning as he has to undergo four days of a scan called an MIBG scan http://www.ucsfhealth.org/childrens/adam/data/003830.html We hope to have the results of that by the end of the week. The Dr’s will then determine where we go from there. He has some problems with his feet at the moment as it appears that he is losing some sensitivity there, this could be a side effect of the chemo or something else more sinister but we will have to wait and see what unfolds.
So far we have raised $132,000 dollars which is just fantastic. I have paid out around $6000 in medical expenses so far and I have a bill to pay to day for around $19,000. To read the Bank Statement you will need this free software installed on your PC http://www.adobe.com/products/acrobat/readstep2.html?ogn=EN_US-gntray_dl_get_reader
If you have any questions please don’t hesitate to ask.
Very Best Regards
Sean & Helena
The following update was e-mailed to donors on April 1, 2008:
Hello Everyone.
Well the rollercoaster ride of cancer continues. Last week Max underwent a bone scan to determine the extent of the cancer in his body. Basically Max has Neuroblastoma cells in his skull, shoulder, stomach and leg. The Dr is concerned because there needs to be a big reduction in cells before he can do the transplant and there hasn’t been a significant reduction from the time that Max started receiving Chemo. Max started a new form of Chemo two weeks ago, he started the second round yesterday. It is too early to tell if the new chemo is effective but the Dr doesn’t want to wait to see if it is so he has decided to hit Max with Radiation therapy now as well as the chemo. He feels that this will give Max the best chance to get to the stem Cell Transplant.
Of course now we have added costs associated with the radiation therapy. The Dr will let me know what those costs are in the next few days. At the moment we have around $117K in the bank, after paying out $19K in hospital and Chemotherapy bills.
I will launch a web site next week which will give us another avenue of fund raising which we may well need given the turn of events.
Max is still well in himself although he is having some trouble walking now with the cancer in his leg causing him some pain, but all in all he is doing as well as can be expected given what he has been though. He absolutely idolizes my wife Helena and she has been spending a lot of time with him in the last few days while I have been away in Australia again. Helena took Max and Halyna (Max’s Mum) to the beach yesterday. Halyna was very upset after receiving the negative news about the treatment so far. I talked to the Dr this morning and he is certainly still keen to fight the cancer aggressively.
Max had a ball riding a bike and just relaxing by the sea. I will send out some pictures tomorrow.
To read the Bank Statement you will need this free software installed on your PC http://www.adobe.com/products/acrobat/readstep2.html?ogn=EN_US-gntray_dl_get_reader
I am having a number if email addresses coming back as invalid when I send these updates. If you know of anyone that has donated and isn’t getting an update please get them to email me there correct address.
If you have any questions please don’t hesitate to ask.
Very Best Regards
Sean & Helena
The following update was e-mailed to donors on April 6, 2008:
Hi Everyone
Here are some pictures of Max, the first two are of him and my wife Helena. They were all taken at East Coast last week. Max loves that bike !!!
As I said last week, Max now has to undergo radiation therapy along with the chemo. Helena and I went with Max and Halyna to see the radiation Oncologist at Mount Elizabeth Hospital on Friday afternoon. The oncologist went over the bone scans and showed us the hotspots on Max’s body. He has cells in two places in his skull, one of which is now pressing on his brain, his shoulder, stomach and thigh bone. The Dr went out of his way to say that this bone scan was better than the one Max had 12 months ago when all of this started, he also said that Max would definitely make it to the Stem Cell transplant which he thinks will take place in about two and a half months. The idea of the radiation is to reduce the bulk of the cancer to give the Stem Cell Transplant the best chance of working
Max now has to undergo nine treatments of radiation therapy which is a cost we were not expecting. I will find out on Monday how much that will be, so we may have to raise more funds to cover those costs as well. The skull radiation will be the most traumatic as they have to make a special mask which will be used to lock Max’s head to the table while the radiation takes place.
The usually put kids to sleep for this but Max hates the Anascetic so he will try and do it awake, which I am sure he can do because my daughter underwent thirty rounds of radiation for her brain tumor when she was three years old and she was only put to sleep for the first one, she was able to handle the rest fully awake.
I will keep you all updated on his progress next week
To read the Bank Statement you will need this free software installed on your PC http://www.adobe.com/products/acrobat/readstep2.html?ogn=EN_US-gntray_dl_get_reader
Best Regards
Sean and Helena
The following update was e-mailed to donors on April 14, 2008:
Hello Everyone
Well another big week for Max. He started radiation therapy last Wednesday. The attached pic is the mask he has to wear that locks his head onto the table so that they can radiate his skull. The little tacker is handling it all pretty well although he is extremely tired all the time. Max will have radiation for the rest of this week then they will do another scan to determine its success.
Helena and I took Max and Halyna to the Singapore Zoo yesterday and they had a great time. Max even had a ride on an Elephant with Helena, he didn’t want to ride with me because he said I smelled too bad !!!!! (It was very hot) . I have a couple of pics which I will send out later in the week.
The radiation has added another $10,000 to the bill. As you can see from the bank statement, that will bring us down to around $100,000 which is what we will need for the Stem Cell Transplant, but there will be further chemo and hospital costs to follow as well. I am not sure exactly what that will amount to at this stage but I think we will need between another ten and twenty thousand dollars to cover all of his expenses. I will keep an eye on all of that and keep you updated on what we will need in the future.
We will have a web page up and running later in the week with a donate button that will allow people to donate money from world wide. The web site is called www.givingchildrenhope.com It will have a blog where I can post updates like this without having to send emails to a million people.
The page has been setup, hosted and donated free of charge by Mamta Shahani at www.8rewardsroad.com I would like to take this opportunity to thank Mamta for her support.
As you will see, Helena and I want to take this further to help other kids from overseas here in Singapore that are in the same boat as Max, but more on that later.
Best Regards
Sean
The following update was e-mailed to donors on April 21, 2008:
Hi Everyone
Well Max has had a pretty good week. He has been continuing the radiation treatment which end on Tuesday. It has been pretty uneventful now that he has gotten used to the process. Helena has been going in with Max most days and she mentioned that he actually fell asleep on the table one day and they actually had to wake him up. Max has also still receiving chemo therapy albeit an oral version called VP16, this is just to keep him covered while he undergoes the radiation.
We will have a discussion with the Dr later in the week to work out where we go from here.
The web site is now up and there is a Blog attached where I will be putting these updates. There is a donation button that will allow people to donate using credit cards. We got our first donation through that on Saturday.
I will be adding more to the site as it gets going. It’s called www.givingchildrenhope.com
Best Regards
Sean
The following update was e-mailed to donors on April 22, 2008:
Hi Everyone
Here is an update from my wife Helena.
Sean
For the past few weeks I have spent many hours with Max, usually just he and I but occasionally, with Halyna his mother as well. He is an amazing little boy (as all children are who are going through such unnatural traumatic times). We have a lot to learn from these children. I learnt this from my daughter Jazmin, but because of my emotional attachment I didn't really appreciate it until now.
Observing Max and the other children at the hostel coming home after their treatment and tears, they just get on with life. Not dwelling on how much the treatment hurt or how sick it makes them feel nor worrying about having to go through it all again tomorrow. No, they come home to kick a ball, run in the long grass, laugh! They truly know how to live in 'this moment'.
When we first met Max he didn't speak any english so we got by with love, facial expressions and hand gestures to understand each other. But now he can speak many words in english, much to Halynas delight and thankfully for me, as Ukraine is way too hard to learn. Once I repeated a word which translated into Ukrainian meant breast. Max thought that this was most amusing!
Our time together is mostly spent hanging out on the couch, watching Power Rangers, mimicking their sounds and movements (I am officially the pink one), playing with cars, painting and his favorite, playing with Kale, my son’s, PSP player. And when he is not so tired he likes to ride a bike at the east coast beach. Then in-between all this, trying to encourage him to eat.
His tastes buds change from one day to another. At the moment it is potato chips, pizza from Gastronomia at the Paragon and very sweet tea! Not the most nutritious. But that is what he wants. He is very sensitive to smells so the food must smell appealing to him. Thank you to all that have offered to make special drinks and foods but it just wouldn't work for him right now especially as he is feeling quite tired and nauseous from the radiation treatment. He also likes sweets such as tic tacs etc. If he had only one sweet left he would always offer it to you first.
Today he had his last radiation treatment 'yippee'. After yesterdays session he had to have another blood transfusion as he was extremely tired and very nauseous. But today he was back to his usual bright self. His appetite had even improved.
I would like to be able to share more photos of Max but he doesn't like having his photo taken without any hair or eye brows. It upsets him. Right now, some eyelashes have grown back and he has beautiful soft downy hair on his head, which he is very proud of. But sadly after next weeks Chemo it will probably all disappear again.
Last week Natalia came for a visit to our house while Halyna and Max were here. Although Halyna and I get by with her little english it was so good for her to be able to talk to Natalia in her mother tongue. Being able to express all her fears.
We have all been so focused on Max that I had forgotten how I felt when I was going through this. As a Mother/Father you put your sick child first. All your energy, every thought every cell in your body every breath is so deeply focused on your child. Mentally willing and fighting the cancer away. But for Halyna it is so much harder for her as she is on her own here fighting for her childs life. She is the bravest woman I know.
In desperation and with little hope left, she bravely left her Husband and two other children and traveled to an unknown country not knowing what to expect. Then to stand up and come forward (when the others were too afraid) and ask us for help after having been told that she would get deported if she spoke to anyone is truly an amazing Mother. That is the strength of a Mothers love for her child.
She is so mentally exhausted at the moment. With the set back of Max having to have radiation therapy and the side effects that came with it + monetary worries. It is taking its toll on her. As a Mother my heart aches for her as I feel so helpless. I know now how my friends must have felt, and once again I thank you all for being there for me.
So for now all I can do is spend time with Max so she can rest and sleep because I know at night she watches over him, so she gets very little sleep then.
I give thanks to the Divine Power that has bought us all together, united as one with the same goal of saving a precious childs life. This has been such an amazing and powerful experience, comfirming to me that there are alot of good souls out there. Without your love and generousity Max would be back in the Ukraine !!!
I hope that we can do the same in the future for other children.
With much Love
Helena
www.givingchildrenhope.com
www.jazzywren.com
The following update was e-mailed to donors on April 28, 2008:
Hi Everyone
Max had a good week last week and finally completed the last round of radiation therapy last Tuesday. He has been pretty tired as a result but he is bearing up well. I spoke to his Oncologist last Friday and they have decided to give him two more rounds of Chemotherapy the first of which started today, then they will do a CT Scan to determine how successful the radiation was, then, depending on the results, they will start taking Max’s Stem Cell’s in readiness for the transplant.
Max is quite happy in himself at the moment, I guess the thing that concerns me most is that he is just skin and bones as you can see from the attached pictures. He eats like a bird and as a result of the chemo, he has a very sensitive sense of smell and he is extremely fussy about what he eats so he isn’t getting a lot of good nutrition at the moment.
Halyna and Max came here for dinner last night as it was Orthodox Ukrainian Easter Sunday yesterday and a very big day for them. I was able to get Skype setup on one of our PC’s with a web cam and Halyna and Max spent two hours talking to their family back in the Ukraine face to face. It was great and Halyna was very happy when she went home, it means a lot to her to be able to communicate face to face with the family that she hasn’t seen in almost six months.
Now that bad news is we are going to need some more money. As you can see from the bank statement we have $102,000 in the bank. These two extra chemo treatments plus the scans plus follow up treatment are going to cost around another $20,000 dollars on top of the $100,000 for the transplant.
So please send out the word to people in your networks who may be willing to help us finish this battle we have begun. Money can now be donated through the web site www.givingchildrenhope.com or directly to me at
14 Lorong Marzuki
Singapore 417060
Sean Wren
www.givingchildrenhope.com
www.jazzywren.com
The following update was e-mailed to donors on May 6, 2008:
Hello everyone.
I thought for this week’s update I would show you a letter than Helena has written to Max’s father is response to a letter he wrote to her. Here is his letter which has been translated from Ukrainian into English. It will give you all some idea what is going to happen to Max over the next couple of months.
We still need to raise around $18,000 dollars and I am starting to get worried we won’t make it. I am attaching the Bank Statement again. There is also an additional $1500.00 sitting in my Paypal account. I have not transferred it yet as it costs money to transfer so I will wait until there is a lot more in there before transferring it.
Best Regards
Sean
Helena,
I spent last night thinking about Maxymko. Unfortunately, the thoughts in my head were not the happy ones. I am very worried about his current state. I compare him with what he was 2 month ago, and see that he looks much worse. I have lots of questions in my head that I have no answers for and I cannot get the answers from my wife as well. I am wondering if he is getting worse temporarily as a result of his exhaustive treatment or it's the cancer progress and he is not recovering. My wife does not understand everything the doctors say, that's why I would like to ask you. Because I want to know the truth whatever it is. If possible, please tell me what the doctors say, how they evaluate Maxymko's current state and what they prognose for him.
Thank you so much,
Ansdriy Romanyk
Here is Helena’s response …..
Dearest Ansdriy
I cannot imagine how hard and how helpless you must feel being so far away. I hope that this will help you understand more fully about what is happening.
We do realize that a lot does get lost in translation when the Doctors tell Halyna about Max's treatment. It is also a lot of information for her to take in, especially with the next phase of Max's treatment.
Sean and I were with her when Halyna spoke to the doctors last week, tomorrow I will take her and Max to visit Natalia so she can then translate for me what will be going to happen.
The Doctors are now preparing Max for the Stem Cell transplant, which is scheduled to take place in June. In preparation there will be many tests i.e.; 3rd cycle of chemotherapy (already completed), 3 days of antibiotics, blood tests, and oral chemotherapy, from now until 20th may.
Then a 24hr urine test, cardiac assessment using ultra sound which is none invasive, bone marrow biopsy, c.t scan, and a new catheter put in. The new catheter and bone marrow will be done under anesthetic and will be done at the same time. Then on the 26th May the stem cell harvest will begin. This phase is called 'conditioning'. He will go into hospital probably the day before. The harvest will take 2 to 3 days, then depending on his platelets etc he can go home for a few days before the transplant takes place. Harvesting is when they take the stem cells out from his blood and bone marrow. It then goes through a cleansing process before putting them back.
If he is unwell he will remain in hospital until the completion of the transplant. He could be in Hospital for up to 40 days/ 6 weeks from the time of stem cell harvest to the completion of transplant and cell regeneration.
During the transplant he will be in isolation, with only Halyna and the Doctors and special nursing staff allowed to enter his room. This is because all his cells + all the cancer will be eradicated, which will leave him very vulnerable to infection. His room will be completely sterile. Staff will be wearing gowns and masks so as not to pass on any germs. In the first 14 days there is a high risk of infection. Then after 3 weeks he should start to regain strength and hopefully feel a lot better as the cells will start to regenerate.
This is going to be very hard for Halyna to see Max go through this. He will not be in pain, but he will feel extremely sick and weak. He will have high fevers and will not be eating. The only pain he may feel will be from mouth ulcers which will occur as a result of the high dose chemo. There will be a lot of activity with the medical staff administering various medications. What he is going to endure during this time, both physically and mentally, will be incredibly difficult for both of them.
I will not be allowed to visit them but I will go in everyday to check on both Max and Halyna. Haylna will only be able to come out for very short periods of time in which I will take her whatever she needs. After the treatment is finished and he is feeling well and platelets etc are good he will be able to return to his true home. To his Daddy and brother and Sister.
This is the last mountain to climb, possibly the hardest. But there is light on the other side. He will soon be home. Max is a tough little boy and despite all he has gone through he still laughs and loves all. You will see a big change in him when he returns home, as he has really matured.
During the radiation treatment Max felt very tired. Also at the same time he was on oral chemotherapy the same that he is on again now. This also suppresses the appetite. When he is having the transplant he will be getting high doses of nutrition intravenously to maintain his weight and eventually put some weight on. I know that this is a big concern for both you and Halyna as he has lost a lot of weight.
The Doctors have given Max a 30% chance of survival which is very hopeful. There will be some long term effects, but I will clarify this with the doctors.
I hope that this answers all your questions. I also hope that Halyna does not mind me telling you all of this, as she may not want you to worry. I hope that I have done the right thing by telling you, but I followed my intuition. She does worry about you and your children at home. She deeply misses you all. But for now please try to have good thoughts about Max. I am going to Australia on Friday and will return on the 18th may before all the major tests start. While I am away I will miss both Halyna and Max as they have become a part of me.
When I think of when it will be time for me to say goodbye to them both, I feel very sad but happy that they will be returning to you. When Halyna does come home she will need a lot of love and nurturing as she has been a tower of strength for Max, and I think that she will not be so strong when this is over. Her and Max have been through a lot together.
She is so brave as only a Mother can be.
Ansdriy, can I have permission to send this reply to all of the generous people that have helped make this possible and are praying for Max. I know that this is very personal and I will respect your wishes if you say no.
So for now keep healthy and strong, as they will need your strength for when they return to you.
With much Love
Helena xx
The following update was e-mailed to donors on May 15, 2008:
Hi Everyone
Well the generosity of you people never ceases to amaze me. As you can see by the Bank Statement we now have $134,000 dollars in the Bank and there are still some cheques at home (I am in Bangkok this week) that need to be deposited. So I am certain now that we have enough money to cover all of Max’s medical needs until he goes back to the Ukraine. I can’t thank you guys enough.
Max has had a tough week with low Platelet levels, he has had to have a couple of transfusions to bring him back to normal. Helena is in Australia this week and he is missing her a lot as he comes over to our house several times a week. Halyna and Max came over on Sunday night to talk to their family in the Ukraine via Skype, after which Max conned me and his mother into taking him to East Coast beach so that he could ride the bike there. We then went to a small theme park where he wanted to ride one of those big pirate ship things that swing backwards and forwards. He was having a wow of time laughing his head off while I was trying to keep my dinner down !!
This week is just a week of oral chemo and basically monitoring in readiness for the Stem Cell Transplant at the end of the month.
Don’t forget the Shear Inspirations event on Saturday night that I sent the email about last week, I will be there and I will be shaving the head of the lovely Sabrina Kua. I will also be talking about my experience when I lost my daughter Jazmin to cancer ten years ago.
http://www.kidsforlife.com.sg/shearinspiration.asp
Shear Inspiration Party
7.30pm till late May 17
Rogues, 146 Market Street
Tickets $75
Tickets are ON SALE NOW
and can be purchased from
MyGym, Level 3, 09/10 Great World City
or email shearinspiration@kidsforlife.com.sg for more information.
Very Best Regards
Sean
The following update was e-mailed to donors on May 22, 2008:
Hi Everyone
The Max’s oncologist called me yesterday and the news is that the tumors have gotten bigger in Max’s stomach and they have now spread to his liver. Helena has written a letter to Max’s father in the Ukraine explaining everything. I am posting it here as I am to devastated to write the details myself.
I will fill you in more on what we decide to do later in the week.
Best Regards
Sean
Dearest Ansdriy
It is with much sadness that I am writing to you now. Halyna has asked me to explain to you in detail what has happened, as she is so devastated that she is unable to talk.
As you know Max had a scan of his abdomen on Wednesday in preparation for the stem cell transplant. Unfortunately it showed that Max has new tumors on his liver and that the cancer has become resilient to the chemotherapy. This means that he cannot have the stem cell transplant. Dr Lee has given Halyna two options for further treatment but neither is a cure.
The first option is to remove the new cancers which involves another operation, not as big as the first but it is still an operation with risks. Then one round of chemotherapy then the stem cell transplant. He will not have time to fully recover from the operation before doing the stem cell transplant so that in itself holds risks. By going ahead with this option it will only give Max a 5% chance of survival or possibly 1 or at best 2 more years of life. The other option is for palliative care. Where he will be given oral chemotherapy. This may give him 6 to 18 months.
Dr Lee said that after 2 months on this chemotherapy he will then do another scan. Sometimes this treatment will shrink the tumors for a short time. Pain medication will also be given when needed.
I feel so cruel having to say this to you, but either way the outcome is not what we have all prayed for, and certainly a great shock for you.
Halyna wants to go ahead with the palliative care treatment as she doesn't want Max to endure another operation etc to only be given a little longer with Max. You and Halyna must do what is best for Max. Whatever you both decide is the right decision and we will all support you both.
Do not doubt yourselves.
I think that Halyna wants to stay here until the next scan because she doesn't have faith in the Doctors in the Ukraine. And perhaps she may feel that by going home now, it is like giving up or that it 'really' does mean the end and by staying here she still has hope. I asked Halyna if she wanted you and your other children to come here but she said no as there was no where to stay. I don't want to interfere with your decisions but I know that we can work something out if you chose to come. I think that you both need as much support as possible now. The Doctors have done all that is medically possible, now we are here to do whatever we can for you.
As I have been typing this my heart is getting heavier with sorrow. I have stopped and started many times over, choosing and thinking about how to tell you all of this. You must have many, many questions, so please ask and we will endeavor to get the answers. Sean and I will talk to Dr Lee again as we have some questions too. Max is in excellent spirits. We went on the Singapore Flyer today http://www.singaporeflyer.com.sg/ When we arrived it was raining very heavily, but by the time we purchased the tickets and had a cup of tea the rain stopped and the sun shone brightly for Max. So we had a beautiful clear view of Singapore.
Maksim truly is a special little boy. You are very blessed to have him as your son.
With much Love
Helena
The following update was e-mailed to donors on May 24, 2008:
Hi Everyone
After a sleepless night Halyna had decided that she wanted to speak to the surgeon that operated on Max.
Initially it was out of anger (a very natural response) that she wanted to speak to him, but then it soon became
clear to me that it was more for validation for her decision.
The Doctor was very compassionate and told told her that what ever decision she makes he will support that decision
and that it 'is' the 'right' choice.
As you can imagine it was the toughest decision that any parent could ever make.
When you are faced with this situation the bond or the relationship with your child changes. I have experienced this
myself but now I have witnessed it with clearer eyes as I watch Halyna with her beautiful son. The love is so strong
and tangible that you can feel it and see it, it is radiant!
Yesterday Halyna seemed a bit better within herself. She is now focused on getting Max home so his family can see him
while he is still active and has rosy cheeks.
She hasn't completely ruled out the operation and stem cell transplant, she will come back here perhaps in a month
depending on how things pan out. But for now the family needs to be together.
The Doctors and nursing staff that have been treating Max must be commended for their support and understanding.
They have told her that she can ring them any time of day or night and will continue to support Max.
Yesterday Max had a sore tooth so it was off to the dentist after seeing the surgeon. He needs to take antibiotics for
the infection so it will be all healed by the time he flies home.
So now we must find a way home for them. They have a return ticket with Turkish Airlines but unfortunately it has
an 8 hour stop in Turkey. Halyna does not want to do this with Max. It is far too long for him and she is desperate
to get home asap, even as soon as Monday.
If anyone has any connections with an Airline that has a more direct route or knows of an Airline that has a more direct route,
and maybe can get us a couple of cheap Business Class tickets it would be greatly appreciated.
This weekend we will try to do as much as possible with them; night safari, DHL balloon, Duck tour and anything else
he would like to do before they leave.
Thank you all again from the bottom of my heart. It has been an amazing journey and one that I feel truly Blessed
to have experienced.
With much Love
Helena & Sean
The following update was e-mailed to donors on May 27, 2008:
Hi Everyone
Well there is much to tell since I last emailed. As you all know Max is now terminal. After much discussion with the Dr’s, his mother Halyna has decided to take him home, although she is prepared to fight this until the very end. Halyna and her husband, first asked to go to America to continue treatment, then they wanted to go Germany because they heard that a child in the Ukraine with a similar diagnosis was treated successfully there. Of course there are many such stories, but to say the diagnosis is the same is not possible to determine. Max is at Stage Four, and according to the Dr’s here, no matter what anyone does anywhere, there is little hope for Max.
There comes a point when you have to weigh off the continued treatment against the quality of life the child will have. Helena and I had to make the same painful decision with our daughter Jazmin and there is no more difficult a decision that anyone could possibly make.
So Helena and I spent the weekend giving Max and Halyna as much fun as we could. Saturday night we spent at the Night Zoo and on Sunday we went up in the DHL balloon ( I am terrified of heights and this is not an experience I want to have again) and then we went to Suntek City where Max spent ages in one of the Games Arcades, and then onto the Duck Tour along the Singapore River. All in all everyone had a great time
Yesterday (Monday) was spent with Max in hospital with an infection and getting a blood transfusion, he also had to go to the Dentist to have a tooth pulled out as it was thought that this was the source of the infection, all in all the poor little guy had a pretty rough day. Today (Tuesday) he went to the Chinese Medical Centre in Singapore General Hospital as Halyna wants to try anything at the moment.
This is not meant to be a cure but will help boost Max’s immune system. We will get the products from the Clinic and send them to Max in the Ukraine every two weeks. This will cost about $400 a time which we will fund from the donations. Max also has a couple of months worth of oral Chemo and various kinds of pain killers that can be used right up to the end, as well as antibiotics for any infections he may get. Medical treatment where they live is almost nonexistent so they will be having to deal with this on their own. They will still be able to contact the Dr’s here who will make themselves available day and night over the phone if needs be.
I have booked flights home for them both. They leave at 11.30PM this Thursday the 29th of May for Frankfurt, and then on to their home city Lvov, in the Ukraine. I have also paid for this from the donations, the cost was $10,550. I booked a return ticket, as its cheaper than a one way flight and they may need to come back for some unforeseen reason. Thanks to everyone who mind the kind offers of support to pay for the flights but you have all done more than enough.
This has been a long and painful journey for us all and I can’t thank you all enough for what you have done for Max and his family.
I also want to state publicly how proud I am of my wife Helena. Her compassion for Max and Halyna has been unbelievable, she has spent every available minute with them both, caring for them, taking them where they need to go and basically being there rock. The benefit to Max and his mother is evident in their eyes, Max idolizes Helena and see’s her as his second mother.
I also want to thank Natalia here in Singapore who has been doing all the translating for us, without her help this whole process would have been almost impossible. Natalia has three little kids to look after, and she has always made herself available to help translate, as well as being a great friend and shoulder for Halyna to talk to in her own language.
So now we send them home. Thursday night is going to be a very sad time for all of us but at least Max is going back to his home and his family, and if he is going to pass away then this is the best place for him to be.
Best Regards
Sean
The following update was e-mailed to donors on May 30, 2008:
Hi Everyone
Well Max and his mother Halyna are now on their way home to the Ukraine. Yesterday was a very busy day for all of us. Max was in hospital in the morning for blood tests and we had to arrange all the medications and documentation for them to take back. We had to help Halyna pack and empty out the excuse for a room they were living in. Then we took them out to dinner last night at an Italian Restaurant and then it was off to the Airport. Natalia managed to get them in through business class check in, they took one look at Max and all the doors were opened. They weren’t charged for having overweight bags, and I swear Halyna managed to get 80 KG into two suitcases !!!
We then managed to get them assisted to the gate and also assistance when they arrive in Frankfurt.
Then we had to say goodbye, something I have been dreading for a long time. But once again the Gods were looking down on us because Max fell asleep five minutes before they went into immigration. He was telling Natalia earlier what he was going to do to make sure my wife Helena wouldn’t leave him, but I am sure when he woke up on the other side that all hell broke loose.
The parting was extremely emotional as you can imagine.
So now we wait and hope that it will all go well for them. I have been very sad today, mainly because I know what Halyna and her husband are about to go through, but more because they are going to have to do it on their own. We will be here for them and the Dr’s are on standby for any questions but the end will be extremely tough for them to deal with without any support.
I will keep you all updated as the weeks pass on Max’s progress. I am going to post all the pictures we have to a web site over the weekend so I will let you all know where that will be next week.
I will get Helena to send an update to you all from her perspective.
I have lots of emails from many of you which I will respond to over the weekend, thank you all so much for your support, this truly is a worthy cause.
Best Regards
Sean
hi shin
i came across ur blog today only as i am fighting a same situation. i have ayounger sister 27 years old having a 3 months old daughter. my sister is also suffering from stage IV breast cancer spread in brain. docs saay she has much less time than any of has thought of. but we are still fighting . all of u out ther please pray that some new breakthrough occurs in the field of cancer treatment so that all these people can be saved.
swati
The following update was e-mailed to donors on June 2, 2008:
Dear Friends
For the past few days since Max and Halyna left, I have been searching for the right words to use to describe how I feel. But I have no words. The whole experience has been quite surreal actually. I have been trying to understand why it feels this way. The only reason I can think of why it feels so surreal is because it was such a natural and effortless thing to do. Something that doesn't happen often.
If someone had of told me that we were going to do this, I would have said 'no', there is no way that I would have the capabilities to do this.. But we did it because we could, because at this time in our life we had the mental strength to do it. And because there are good people like yourselves willing and able to reach out. It also confirmed to me that there are NO coincidences in life. Max and Halyna came into our lives and yours when were all most able to help.
They became like family to us so easily, it was like we had known each other for a long time. It was amazing how with the language barrier between Halyna and I we could still communicate. We would laugh when Halyna would say something to me and I would translate it to Sean.
Some people had suggested that by doing this it kept the memory of 'Jazmin' alive. I don't need to do anything to keep my memory of 'Jazzy' strong and alive. She is deeply imbedded in my heart forever. What has touched us both, is that even now, after ten years she can still make a difference in a person’s life, as will Max when you think of him and reflect upon the happenings of the past few months. Without your help he would not have even made it this far.
Much Love
Helena
The following update was e-mailed to donors on June 3, 2008:
Hello Everyone
Well Max and Halyna are finally home. They had a twenty Four hour journey back to their village in the Ukraine. Max had a fever on the plane and was very cold apparently but he made it home OK. We have had little communication with them so far but we are arranging a Skype video session this Sunday so we should be able to get up to date on how he is by then.
We have done as much as we can so all we can do is wait and hope. I am attaching the latest bank statement. I paid a hospital bill today for $20,730, we have also paid for their airfare, as well as a couple of other minor medical expenses, there may still be some more bill’s from the hospital as well to finalize everything. As you can see we still have a lot of money in the bank. I will sit on this until we know Max’s situation one way or the other, they have a return ticket to Singapore so they may come back for further treatment although I suspect that will be a long shot.
I am missing them both a lot at the moment and I am terribly worried about how the family will cope during the final days if they are to come, there is virtually no medical support where they live so they will be dealing with the situation on their own. And I know from bitter experience how tough that will be for them all.
So now Max is very much in the lap of the God’s, so all we can do is hope and pray that it will all work itself out. Whatever happens, at least he is at home, in his own bed and with the people who will love him and care for him the most, his family.
Very Best Regards
Sean
www.jazzywren.com
www.givingchildrenhope.com
The following update was e-mailed to donors on June 8, 2008:
Hi Everyone
Well the news is not good. We got an SMS from Max’s mum Helyna at midnight last night letting us know that they were taking Max to the local Hospital, something they desperately did not want to do because of the terrible care he got there when he was first diagnosed twelve months ago. They have also been in touch with Max’s Dr here in Singapore.
Max turned five years old last week but I haven’t got any update on what they did for his Birthday.
Max isn’t eating and is basically sleeping a lot of the time as well. He is also very yellow which one can only assume is his liver shutting down due to the tumors. Max is also running a constant fever so all in all he is a very sick little boy and we are very worried that the end is near for him. I will let you all know what is happening as the days progress but lots of prayers are pretty much all we have left now.
Best Regards
Sean & Helena
www.jazzywren.com
www.givingchildrenhope.com
I'm very sad to say, the following update was e-mailed to donors on June 11, 2008. I'm sorry I don't have further details. I can only hope that Max suffered no pain and I'm thankful that he was with his family in the end.
Hello Everyone.
Max passed away in the early hours of this morning Singapore time. Please pray for his family.
Best regards
Sean & Helena
The following update was e-mailed to donors on June 12, 2008:
Hi Everyone
Well it’s been two days since little Max passed away. We have had many emails from a lot of you asking for an address to send cards and flowers too. I am attaching it here. Please send as many as you can so that they can see how many people are thinking of them.
Romanyk, Halyna
LviVska oblast
Drohobiysky Rayon
celo Rykhtychi
vul. Molodizhna 239
82151 Ukraine.
Helena called Halyna yesterday to see how she was and she was a mess as you would expect. I called the Dr here in Singapore who had been helping them with pain management, and he will give me an update on what happened next week.
Max’s life ended much quicker than we all expected but at least he passed away with his family by his side, so for that I will be eternally grateful. I have been very sad this week because Max’s passing really brought back all the memories from when my daughter died, but I am more sad for Max’s parents, they will be at the depths of despair right now, we just wish we could be there to support them.
I sent them this poem that I read at my daughter Jazzy’s funeral ten years ago which, hopefully, will give them some comfort.
Don't think of him as gone away
His journey's just begun
Life holds so many facets
This earth is only one
Just think of him as resting
From the sorrows and the tears
In a place of warmth and comfort
Where there are no days and years
Think how he must be wishing
That we could know today
How nothing but our sadness
Can really pass away
And think of him as living
In the hearts of those he touched
For nothing loved is ever lost
And he was loved so much
Best Regards
Sean & Helena
The following update was e-mailed to donors on June 17, 2008:
Hello Everyone
I have some posted some pictures of Max. He was such a beautiful kid, I just can’t believe he is gone.
http://www2.snapfish.com/thumbnailshare/AlbumID=234874351/a=120201765_120201765/t_=120201765
You need to create a userid and password but its free.
Best Regards
Sean
The following update was e-mailed to donors on June 23, 2008:
Hi Everyone
Well as you can imagine Max’s family are totally devastated. We cannot communicate very well at the moment because Natalia, who has been doing all the translating for us, is in the USA for the next seven weeks. I will try a get a decent update for you all when she returns.
In the mean time what to do with Max’s money ?. I have had input from a number of people, and pretty much everyone wants it to be used for individual cases rather than donating the lot to a single charity. Both Helena and I are happy to do it that way with each case being judged on its merits, we would also like to keep updating all of you on the good use your money will be put towards.
Helena and I attended a fund raiser for the Make-A-Wish foundation on Sentosa Island a couple of weeks ago. They were showing videos on various kids who have had wishes granted. One particular case struck us both as being particularly sad. There is a Singaporean boy here in Singapore named Darren who is on Dialysis here in Singapore awaiting a kidney transplant. Darren is eighteen. This boy is living with his sister and his aunt in a small HDB. His wish was to get a bed for his sister so that she would no longer have to sleep on the floor !!! They share the same room. In the video he was also thankful for the food vouchers from NTUC to the value of $600 and that this would last them SIX MONTHS !!!
Helena and I wanted to personally donate money for food for them for the rest of the year, but the people at Make-A-Wish asked if we could also donate a bit more so that he can get Physiotherapy to help him walk again. The amount we need to donate is $2145.00. This will get him three months worth of Physiotherapy and his Social Worker says this will make a big impact to his self esteem and well being.
If I don’t hear any major objections I will go ahead and pass them the money. I will then give you all an update on his progress as he goes through the Physio. We will also talk to the Dr’s at East Coast and Mt E Hospitals to be on the lookout for any other cancer kids who may need our help.
Best Regards
Sean & Helena
The following update was e-mailed to donors on June 24, 2008:
Hi Everyone
I will be sending a cheque for Darren’s Physio treatments today. Here is a letter from the hospital outlining his situation.
Best Regards,
Sean & Helena
-----Letter below-----------
Mr. Sean Wren
c/o Ms. Tho Pei Leng, Director of Programme Services
Make-A-Wish Foundation (Singapore) Ltd
190 Clemenceau Avenue
#07-02 Singapore 239927
Dear Mr. Wren
DONATION TO PATIENT, DARREN LEE VEE LIY – NRIC: S8873454H
Thank you for your interest in rendering assistance to Darren.
Darren is a 19-year-old Chinese male who is seeking treatment in National University
Hospital for end stage kidney failure. He has been on peritoneal dialysis since 2000 when he
was 13 years old. A serious infection at the end of 2006 resulted in him having to convert to
haemodialysis (blood exchange). He comes to Children’s Kidney Centre at NUH for
haemodialysis thrice weekly.
Depression and isolation caused Darren to gradually lose his ability to walk in recent years.
In spite of several attempts to rehabilitate him, he found it very challenging to persist in
rehabilitation. Through counseling, Darren was able to recognize that he had given himself
too many excuses to avoid rehabilitation sessions because they were hard work, and that
the situation had snowballed into unnecessary dependence on his wheelchair and his family
members to carry out basic activities for him when he could actually do them himself.
Together with Darren, we have drafted his goals for a 3-month physiotherapy programme for
his rehabilitation. I am appealing for a total sum of $2262 that will go towards the cost of
physiotherapy and his transportation to and fro NUH thrice weekly. Below is the breakdown
of the funds required for this programme:
Physiotherapy $28 per session
Taxi vouchers $30 per return trip (vouchers are in denomination of $5)
Total $58
Total x 1 month $754 (est. at 13 physiotherapy sessions/month)
Total x 3 months $2262
I will review Darren’s progress after the end of each month.
If you are in support of the appeal, please make the cheque out to “National University
Hospital (S) Pte Ltd”, with Darren’s name and NRIC on the back of the cheque and send it to
the following:
Attn: Ms. Tey Li Li, Medical Social Worker
Shaw-NKF Children’s Kidney Centre
The Children’s Medical Institute
National University Hospital
5 Lower Kent Ridge Rd
Singapore 119074
Thank you in advance for your kindness and generosity.
Sincerely,
Tey Li Li
Medical Social Worker / Programme Manager
Shaw-NKF Children’s Kidney Centre,
The Children’s Medical Institute
Tel : (65) 6772 2447
Fax : (65) 6779 6401
Email : Li_Li_TEY@nuh.com.sg
The following update was e-mailed to donors on June 28, 2008:
Hello Everyone.
Thanks to Catherine LaJeunesse, who is one of the donors that helped Max, she has pointed me at an organization here in Singapore which I think can benefit from the funds we have raised, and will continue to raise in the future. It is called the KK Outreach To Kids Fund. Here are some details
l Established in April 2002
l Humanitarian fund to help children from the Asian region with complex surgical conditions
l Medical expertise not available in their home countries
l Good medical prognosis & turnaround after surgery to lead normal lives
l Supported entirely by charitable donations
• KKROK entirely funded by charitable donations
• Doctors donate time, and do not charge
• Hospital gives a special discount on all charges
• Application process
• Auditing process
• Outcomes measures
• No admin charges, other charges/subtraction from donations.
• For Mission trips hospital allows unrecorded leave
This is all part of the KK Women’s and Children’s Hospital. I have spoken to Dr Anette Jacobsen who is the Chief of Surgery at KK. She actually has a case of a young two year old girl in Cambodia who is in need of surgery to correct some kind of facial abnormality. This will cost around $15,000 and they will be discussing where the funding will come from next week. I am proposing we fund this little girls surgery.
I will post updates as I did with Max and we will try and get photo’s as well. They have cases like this coming in all the time so I think this will be a good avenue for some of our funds. I have attached a photo of a young child that shows the type of work these fantastic Dr’s are doing here.
Best Regards
Sean
The following update was e-mailed to donors on July 15, 2008:
Dear Friends
We have received some sad news about Halyna. She is not coping very well at all after the loss of Max. She has had to be admitted to hospital. Apparently she can not accept his loss.
Unfortunately some of us know too well how she is feeling right now. That place that is so empty and dark, the abyss of despair and grief. The place that you go when you are handed that life sentence of a life without your child. That old cliché that 'Time is a healer' is really true. But to be told that when you are in that 'place' makes no sense at all. I am truly fortunate now to have the wisdom of time on my side.
I pray that she will seek a way out and find her inner strength again. I know that it is there, I have seen hers and we all have it. I hope that she remembers the time that she said to me that Sean and I gave her inspiration to go on and that she looked at us, at how we had survived. She said that if we can do it so can she. We found our way to live again.
It worries me immensely that she will not receive the proper care and support that she so desperately needs right now
So all we can do is send positive thoughts and prayers to her and her family.
With much love
Helena
The following update was e-mailed to donors on August 17, 2008:
Dear Friends,
It’s been a couple of months since Max passed away and Sean and I have been concerned about what to do with Max's money. As you know we have used a small amount for Darren's physiotherapy and are planning to pay for the facial operation of a little girl from Cambodia. We have attached a picture so that you can see the little girl. All up the operation will cost around $18,000 but she will go home to Cambodia completely cured. The operations and hosting is being handled by KK Women’s and Children’s Hospital here in Singapore.
We had heard of a 16yr old boy Anton from the Ukraine that is currently being treated here. I have made contact with Nellie (nurse practitioner) who was involved with Max's treatment. I asked her about Anton and if we could help him. But due to protocol and privacy she can not introduce us to him nor can we pay for his treatment without the mothers consent. Of course we can not
get her consent because we do not know her. She suggested that we give the money directly to the hospital as a general donation. Or send the money to the charity group in the Ukraine so then they can pass it on to Anton's family.
We do not feel that it is the right thing to hand over all the money to the hospital, nor do we feel comfortable sending it all to the Ukraine as we know of the corruption that takes place in the Ukraine.
We have since found out that he does not need the money as a 'firm' is paying for it ?? So for now we will just sit on the money until something else comes along, but rest assured your money is in safe hands.
We have only just found out that Anton does not need the money when we spoke to Halyna last night. Yes we have finally spoken directly to her through Natalia kindly and patiently interpreting for us.
She is not in a good place mentally right now. The family has drifted apart since Max's passing and Halyna feels that she has nothing to live for now. Unfortunately she does not have anyone that she can talk too for comfort. So when she spoke to us last night she poured out all of her feelings which I am sure gave her some comfort and relief. Halyna holds in her heart hope that some how I can help her through this. As you know we did share a special bond that only the Universe understands. Before we spoke I had been toying with the idea of traveling to see her in the Ukraine. I was hesitant as I didn't know how this would help as I wouldn't have anyone to interpret for us.
But when speaking to her last night I realized that it would be of great benefit for her to come here for a couple of weeks as we would have Natalia (who is also close to her) to help us and it would help Halyna conceive some closure. Then she can return home feeling stronger and more able to cope with what awaits her back home.
As you can see there is no end to this story nor for anybody else that has lost a child. You must learn to accept first, then move forward carrying your child in your heart for spiritual strength.
Sean and I would like to use a small amount of the money to bring her here. Sean has asked for a refund from the original return ticket after Max passed away and we will apparently get around $2000 back in the next five months. In the mean time we will take the air fare which will be around $3000 from Max’s fund, then put the $2000 back in there when we eventually get it back from the Airline. If anyone has any objections please let us know. If we do not hear from anyone by Wednesday we will go ahead and make the necessary arrangements. We will forward on the details such as receipt etc.
We thank you all again for your support and genuine concern for Halyna.
With much Gratitude
Helena and Sean
The following update was e-mailed to donors on September 3, 2008:
Accommodation desperately needed.
A few months have passed now since we said farwell to our little Max. We think of him often and I personally have asked silently and quietly to him, and to the Universe to send us someone else whom we can help. Because as you know there is a substantial amount of money left from Max's trust money. Yesterday as I battled through Singapore's endless road works, traffic jams and mind numbing crowds I was thinking of how I couldn't wait to go home for a few weeks to be by the sea side, no crowds no road works just the sound of the sea and the birds. I was feeling very agitated. Then, Elena called me with news of another family (just one of many now in Singapore) from the Ukraine with a sick child.
A reality check for me!! I have no control of the road issues nor the crowds (why would I even think that I could!) and I am very fortunate to have two homes, one here and one in Australia. I have choices. We all tend to get lost in our own pointless battles. Elena and Zufar have kindly taken the family into their home until they can find alternative accommodation. A place to call 'home' for the next few months of uncertainty. Six year old Dmytro Ishchenko has a Wilms Tumor http://en.wikipedia.org/wiki/Wilms%27_tumor and has only a small chance of survival but despite his condition he is a spritely young lad. There is something so very special about him (like all extremely sick children). When he talks to you he looks at 'you' with his big deep blue eyes. He connects with you. He makes and holds eye contact and talks from his heart. Something most of us do not do.
The family has come here through a generous donation from a sponsor in the Ukraine. Our understanding is that Fifty Thousand US dollars was paid directly to Parkway Health for his treatment. But unfortunately they did not realize or were not told that they would have to pay for their accommodation and food. So they are in a desperate situation. All the accommodation that Yana (marketing executive for Parkway Health) has arranged for them is most unsuitable. I understand that they were asked to pay over $2000 per month for 'a' room, no cooking facilities and with just a bed.
There seems to be a lot of discrepancies happening with these families that we don't fully understand, for example; why were they not told about the accommodation situation?? There is also a lot of other underlying happenings with the hospitals here in Singapore that are not appropriate to mention in this email.
They are just one family that we have contact with, there are more! Both parents are here but the father is leaving tomorrow as he needs to work.
What we would like is to find someone that could offer them a room preferably near Mt Elizabeth or an MRT station at a reasonable rate. We will help them with food and rent from Max’s money. My dream is to one day find a large house so that we could support a few families, like 'Ronald McDonald House' in Australia. This would help to relieve the stress of having to pay ridiculously unreasonable amounts for rent. It is such a stressful time for them or any family that is going through this. Having to find money for rent and food only adds pressure on them.
This would all have to be done independently as I doubt that the hospital will support us in this venture.
I know through this network that we can collectively come up with a solution.
Sincerest regards
Helena & Sean
The following update was e-mailed to donors on September 12, 2008:
Dear Friends,
After much deliberation the family have decided that they would be more comfortable if they were on their own. They also wanted to stay
near Elena and Zufar (east coast). So we have decided to use Max's money to pay for their rent.
We want the thank everybody who offered their homes. We are touched by your generosity.
The accommodation at Eastshore Lodge (where Max stayed) will cost per month $1200 + an additional $20per month for power because they will use our fridge!!!
Or $30 per month to use their useless smaller than average bar fridge that is the size of a small safe. There was no negotiation on their part this time.
Unfortunately the doctors will not allow Dmytro to be treated at Eastshore Hospital????? At this stage we do not know why.
So this means that they will have to travel to Mount Elizabeth for his treatment. We will take care of this as well as their food.
Dmytro has already had a few rounds of Chemotherapy. He will undergo more tests to see if the cancer has spread then decide if more surgery is required and 'Stem Cell Transplant'.
We will keep you posted. Please let us know if you wish to be taken off the mail list.
Warmest regards
Helena and Sean
The following update was e-mailed to donors on Sept. 24, 2008:
Dear Friends
After settling Dmytro and his Mother Natasha into their less than modest accommodation, Natasha had to make the difficult decision
as to what was the next step for Dmytro's care.
Sean and I took her along to see Dr Chui last Monday. I went in with her while Sean kept Dmytro amused (very easy to do).
After 3 hours of many questions from Natasha which were answered patiently and clearly from Dr Chui she decided to go ahead with
the operation. This is his only chance!! Without the operation he has no hope, but with the operation there is hope.
Dmytro underwent 12 hours of surgery which comprised of 3 separate operations last wednesday to remove the many tumors in his little 6 year old body.
The first procedure Dr Chui removed his spleen along with the tumor which was attached to it then another tumor that was growing within the space
that his right Kidney used to be.
Then followed two more procedures on his lungs to remove the 12+ tumors within the two lungs.
Elena, Sean and I visited him on Friday night. It broke my heart to see him this way it took all my strength to hold myself together.
It wasn't the many many tubes that were attached to his body nor the monitors nor the thought of what he had just endured.
It was his Braveness that broke my heart!!! He would close his eyes softly, his face would flush a telling pink until the pain eased. Then he would
open those big blue eyes and just stare, looking at nothing in particular.
I know that he was having Morphine for the pain and that he was drowsy from that, but it was something else. He wasn't complaining nor crying
he was so quiet. The look in his eyes was that of pain, shock, and wanting to be left alone.
But not a sound, even when Natasha had to take him for a few steps he said 'ow' very quietly with each step, that was all.
On Sunday when Sean and I droped by, he was sitting in a chair, I went to give him! his toy plane but he just gently raised his hand with a look
on his face that said 'no'. Not now. He just wants to be alone, left to heal.
I visited them today and Dmytro looked more comfortable within himself. He had just had a bowel movement after one week!!
Natasha told me that he is still very quiet and that he had told her that he would play and talk again once all the IV's are out.
This little boy is an amazing soul. Natasha told me that after the Doctor checks him and removes any tubes etc, he ever so quietly says 'thank you'. he never complains!
There is good news too. Dr Chui was concerned that some of the tumors' could have mutated into NueroBlastoma which is a common occurance
in stage V Whilms Disease. The Biopsys came back all clear of NueroBlastoma all the tumor's were Whelms.
So now we wait for him to get strong enough for Chemotherapy and Radiation Therapy.
Dmytro has been fighting this since he was 10 months old! Can you imagine this? What he and his parents have been going through?
This is his last hope so let us all Pray together. Even if you are not comfortable to Pray nor believe in God, or a higher consciousness just have him in
your thoughts and close to your heart.
Dmytro dreams of being an astronaut and exploring the galaxy, he loves watching documentaries about animals, scientist and rockets and planes.
When he gets out of hospital Elena will take good care of him, providing home cooked meals and company for Natasha.
And when he feels up to it, we will take him on some outings to the Zoo and Science park.
Much Love
Helena and Sean
The following update was e-mailed to donors on Sept. 25, 2008:
Dear Friends
Dmytro is out of hospital and doing well. He is still in a lot of discomfort but much happier.
One of my Yoga students/friend ( thank you Vickie) has kindly lent me her sons Stroller for a few
weeks so Dmytro can go outside. He isn't up to walking around just yet but it will be good for him
to get outside in the fresh air.
There is another little boy from the Ukraine that has just had an operation on one of his kidney's
to repair a malformation. He is staying at our friends Elena and Zufar until they return home in 10 days.
He is only three and still has a tube connected to his bladder. This makes it tiresome for him to walk
around for long periods.
Does anyone have a stroller that they could use for the next 10 to 14 days?
Much Love Helena and Sean.
Quick update:
Dmytro was rushed into emergency surgery just an hour ago at 10.30PM with an obstructed intestines. Helena took them into the hospital and she will update you tomorrow when we know more.
Sean
The following update was e-mailed to donors on Sept. 26, 2008:
Dear Friends,
Dmytro's is now recovering in ICU after undergoing a 3 hour operation last night to repair his intestine. Dr Chui removed 5cm from his large intestine. He is a wonderful Surgeon and human being.
I watched him last night as he examined Dmytro and administered his IV, he was gentle and genuinely caring.
Last night I really thought that Dmtryo's time was coming to an end as he lay helpless on the bed. His lips were
bleeding because he was severely dehydrated, his breathing was shallow with little grunting sounds, he lay motionless
only moving occasionally when the pain became too unbearable, his eyes were full of pain.
Those big blues eyes that look into your soul showed pain and fear. But not a sound.....
At administration last night they wanted a $4000 deposit. I explained the situation regarding the money: money was paid
directly to the hospital from the Ukraine.
The woman at the desk looked into their account which showed that the money $57,000+ has been used up already.
She will look into this further and get back to me. Sean will be returning tonight from KL then tomorrow he will get a bank
cheque drawn for the $4000 deposit.
This whole money situation with the Ukraine is so confusing. Natasha is not sure about the money. Yana will not
divulge any information. I don't know what is happening. I do know that Yana and her team are not happy with our involvement. I also know that if Elena had not gone to check on them, Dmytro would have died.
Where was Yana and her team??
Dmytro's recovery and health is a priority, the money issues will be settled.
Much love
Helena and Sean
The following update was e-mailed to donors on October 6, 2008:
Dear Friends
It has been a long tough week for Dmytro, with little improvement.
Since I took him to Hospital a little over a week ago he has undergone 3 more operations!! That is 7 in total within
this remarkable little boys life.
Dr Chui repaired his intestine but unfortunately due to Dmytro's condition his body was unable to heal itself.
So another procedure was done last friday. This was key hole surgery, less invasive, but the intestine continued
to breakdown and a absess formed.
On saturday Sean and I went in early to see him. Dr Chui had given Natasha 2 options of how best to treat this problem.
It was very over whelming for her, especially as she is here alone without her husband.
She was waiting to talk to her husband. With the 7 hour time difference and very little money this was proving to be
quite a challenge.
Andry finally rang (5am Ukraine time). They spoke at great lengths and many tears were shed. Time was at the essence
He then asked to speak to Sean. He asked Sean to take care of his wife and make the decision of how to save his son!
At that point of time we were filled with very mixed conflicting emotions.
One of how proud and privileged we were are to have someone have complete trust and faith in us.
The other of 'Oh Shit' this is a lot of responsibility.
Dr Chui was on hand immediately to talk to us. Then the decision was made. Dr Chui would perform another operation to remove
the abscess and repair his intestine and also place a 'Stoma' into his bowel. This will require another operation in 4 weeks
to remove it.
Once the decision was made there was no time to spare, forms were immediately signed then Natasha had to tell Dmytro.........
I can not begin to explain the sadness of that moment! Tears rolled down his little pale cheeks as he softly sobbed 'no'.
There was no screaming or raising of his voice, just stillness and control.
He held onto Sean and my hand ever so tightly .
The nurses prepared him then Natasha gentle recited a prayer to him. There was peace, you could feel it.
But then Sean gently carried him to the awaiting trolley and the tears began again.
We went with them to the operating area. I then rang Elena so she could speak to him before he went in. He broke down.
The look in his eyes as he spoke to her was heart breaking.
The operation went well. We saw him yesterday, he was okay, not great, just okay. He told his mother that he likes it when
men, Sean and Zufar and even Dr Chui come to see him because he gets 'strong'.
Where does that come from?? How does a 6yr old feel that and be able to articulate that??
Dmytro has a very long difficult road ahead. The tumors that were removed from his lungs just 3 weeks ago have already
started to grow back. The doctors want to radiate the lungs asap. Then the abdomen when that has healed.
He has a 10% chance of survival. We can look at this one of two ways.
One of the logical or lateral thinker that 10% is no chance at all. Or look at it from a parents mind. If you were to line up 10 children,
that one child that survives could be yours??!!
So for now there is still hope. Dr Chui has told us that he would NOT continue if there was no hope.
But unfortunately there is no money. The organization that helped them come here will not fund them anymore because of
his prognosis.
The foundation here that was looking into his case have also declined to help because of his prognosis. So for now
we will do what we can and get him through this step.
Today Natasha showed me many pictures of home and when they first arrived here. They looked so happy.
Dmytro was so vibrant and full of life and Natasha looked happy and healthy. Now he lays there weak and in pain but every so often
his vibrancy shines through again. Natasha is pale and thin.
She told me of how much she loves her husband and misses him so much. This is a lot for her to go through on her own.
Elena has suggested that we bring him back so that they can be together as a family, not alone.
Sean will look into this ASAP
So now Pray, send Love.
Helena and Sean
The following update was e-mailed to donors on October 8, 2008:
Thank you Sonia and Ken for your generous offer to help fund Andree ticket.
We have put bringing Dymtro’s father on hold at the moment. He came under extreme criticism from the Ukraine
for wanting to come back here.
People there thought that we should not waste money on his ticket, they also said that other mothers come here
on their own.
This is what we are constantly up against. The money (from Max's Legacy or our own) has nothing to do with any of them.
And as for the mothers that do come here on their own they have been too frightened to speak to anyone as they have been
told by certain people here that the government will send them home if they do.
I am sure if they were not so frightened and we were to offer to bring their husbands here they would accept our help.
It is a culture and people that I do not understand. They are full of mistrust???
So for now we will wait until Andree makes a decision. We are also not sure if Dymtro will start the radiation treatment.
He is still very sick and frail. I saw him today and he looked better but was still in pain. It is up to the doctors now
as to what to do next, the cancer is very aggressive.
We also may not have enough funds left after we pay this current bill, therefore the hospital probably will not continue
with his treatment. This delicate matter is not clear at the moment.
If no further treatment is viable or available then they will go home, but if he does go on with radiation therapy then I do
hope that Andry will come here.
It is so important to have family around at a time like this.
I am going to send this reply out on our mailing list. I hope this is ok with you, let me know if it isn't.
Take care
Helena Wren
The following update was e-mailed to donors on October 18, 2008:
Hi Everyone
Helena is down in Australia for a wedding at the moment so I thought I would send a brief update on Dyma. The little guy has had a very tough time so far. But I guess the good news is we brought him home last Monday for a few weeks of recovery. He has lost a lot of weight and he was really suffering from malnutrition as a result of all the surgery he has been through. He now has a bag attached externally to his stomach which will give his intestines a chance to heal.
The Dr hopes that if he gains some weight that the bag can be removed and his intestines rejoined in another couple of weeks. Since he has been home he has been eating well and he is moving around and enjoying trips to the park etc.
The Dr has found new tumors growing in his lungs even after only two weeks of having the original tumors removed so he wants to do radiation therapy to buy him some more time. His mother is still deciding whether or not to continue with treatment at all as his prognosis is very poor.
I will be taking them to the hospital on Monday for a checkup so I will know more then.
On a happier note, the little Cambodian girl who’s facial surgery we paid for has returned home and she has fully recovered thanks to all of you. I am attaching a photo.
Also many thanks to Barbara. I received the book for Dyma and I will give it to him when I see him on Monday
Best Regards
Sean
The following update was e-mailed to donors on December 3, 2008:
Dear Friends
A sad update on Dmytro. After many weeks of hospital stays and procedures and fighting a brave stoic battle, Dmytro has now returned to the Ukraine.
His cancer had become too agressive, there is nothing else that can be done for him.
Last Thursday night Elena and Zufar hosted a lovely dinner to farewell Dmytro and his mother. Surrounded by all of us that had been involved in his care, he was in bright spirits. He said how happy he was having so many friends with him.
They left on friday for the long journey home. He is now on 3 morphine patches for the pain.
Before he left Elena told him that she would miss him, he smiled and said ' dont miss me, I will fly and visit you often'. Dyma was an incredibly intelligent and brave young soul.
So now all we can do is pray for a peaceful passing.
Take care
Love Sean & Helena
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