Pray for baby Reef Carneson

Hi there



Not sure who all knows the details about baby Reef Carneson but please pray for him as you'll see from the updates by family he is very sick today and the doctors are even very worried about him.

I have copied the below from the website www.savebabyreef.com

Reef Donald James Carneson was born on the 17th September 2008 to proud parents Lydia and Ryan. Reef was diagnosed with Acute lymphoblastic leukemia (ALL) at just 5 months old.

Reef is currently in the Donald Gordon’s Pediatric Oncology ward in South Africa where he is recieving most of his treatment.

Reef has had intensive chemotheropy amongst other treatments to try fight this leukemia with more chemo to come. Reef will need a bone marrow transplant to ensure the best hope of surviving this fight. Urgent fundraising is currently taking place in order to help pay for this expensive proceedure.

You can follow Reef's progress on Facebook by joining the group 1,000 candles for Baby Reef.

So far Reef has shown what a fighter he is and takes strength on a daily basis from his mom and dad who are doing a superb job at supporting him through this difficult time.

Through everything this little boy has been through he still manages to smile and be a bright shining ray of light to those closest to him.

Updates from Reef's Family
13/09/2009
Reef is really not doing well! fever, vomiting, dihorrea.....this is terrible to watch him suffer so.

09/09/2009
Reef is doing well. He is a bright red tomoto at the moment but happy and playing. Love to everyone. I could hug and kiss the world.

THIS IS A SHOUT OUT TO ALL SOUTH AFRICANS!!! DO YOUR DUTY AND REGISTER AS A BONE MARROW DONOR! REEF NEEDED IT AND YOU COULD SAVE A LIFE TOO. 14 SEPTEMBER IS SUNFLOWER FUND BANDANA DAY. BUY A BANDANA TO SHOW YOUR SUPPORT.

08/09/2009
Reef's transplant is almost complete. has bern a good day. So far so good. Reef is fast asleep now. Will keep you all posted on his progress. Thanks for all the love and support and prayers. GOD IS AN AWESOME GOD

07/09/2009

Reef is happy, fit and strong for tomorrow. Please say a prayer for the amazing donor who will under go surgery today to get the life saving marrow for Reef. He is an angel sent by God to save my boy. No amount of thanks will ever express how grateful I am to you. God bless you. Amen.

04/09/2009

Have had a rough night! Reef has a snotty nose and he coughed all night long. My sweet boy hope you feel better soon. He is getting chemo today that will kill off his Tcells. These are his army cells that fight infection. They do this so that when he... gets his new bone marrow then his body will not reject it.

02/09/2009
Reef has been goofy the whole day today, the drugs he is on have made him high as a kite and he has spent the day giggling and being all lovey!!!! weird but i kinda liked it except he has not slept at all.

01/09/2009
Reef started his chemo this morning at 8am to kill off his bone marrow....here we go......God give us strength and faith to get through this amen.

31/08/09

Hi, 1st day down 99 to go. It was a rough one. Reefs shoulder swelled up and he was in agony the whole day. His new lines were not working properly but it has all been sorted and he is drugged up to the eye balls and sleeping peacefully. I will try to update every evening so that you all can follow his progress. Keep up the candles and prayers....its how we will get through this. Love to all. Ryan, Lyds and Incredible hulk Reefie

28/08/09
REEF IS IN REMISSION WITH MINIMAL RESIDUAL DISEASE - 1% CANCER. PREP. FOR TRANSPLANT STARTS TUES. PROCEDURE 8TH SEPTEMBER.THANKS BE TO GOD, AND EVERYONE WHO HAS HIM AND THE FAMILIES IN THEIR THOUGHTS AND PRAYERS, LOVE CAROL AND JIM.

27/08/2009
Hi Everyone. So we are entering the final stages. Reef is below 5% cancer and we are ready to go. On Monday we go into complete isolation to start killing off his bone marrow so he will be ready on the 7th Sept to recieve his new clean bone marrow and we pray that all goes successfully and that we will never have to deal with this cancer again. Reef is so strong and has been so amazing. I thank you all for your prayers and love and support. We are getting there and the happily ever after is so close I can taste it. God we ask you to please be with us. Amen

14/08/2009
I am heartbroken Reef's cancer went from 2% to 20%!!! Checking into the hospital in Centurion tomorrow for another round of chemo to try to get him in remission before the transplant. this all just sucks

12/08/2009

Hi all, Reef had his bone marrow aspiration today to see if we nailed that 2%. Please God let it be gone and him in remission.....will let you all know as soon as i do. His two bottom teeth have popped thru. So cute but painful for him my poor baby boy. All will be over soon. Love you my sweet angel.

08/08/2009
Hi everyone, Reef, Ryan and I are at home at the moment enjoying a much needed break before the transplant on the 7th Sept. It is soooo nice to just be normal for a change. I sat outside on the grass with Reef and he played in a bowl of water. Was one of the best days ever, him just being a normal baby. He is teething at the moment which is making him super grumpy but one the other hand he is sooo cute and animated. I enjoy every moment with him and thank God every day for him. Ryan and I are nervous but excited about the transplant. The final test results are in and the match donor is so perfect that you can not get a more perfect match. The docs are confident and we are building Reef up so he is nice and strong for the procedure. He will have surgery before hand to insert the hickman lines into his neck. I ask everyone to continue praying for us for this last stretch of the race. We have almost won with God waiting at the finish line. Thank you all for your kindness and prayers.

31/07/2009

What a stressful week!!! I feel like I have aged a million times in the last few days. I look in the mirror and do not recognise the tired haggered person I have become. So Reefie got another terrible infection causing his blood pessure to drop. He stopped eating and had violent diahorrea. He was ssoooo sick. It broke mine and Ryan's hearts and we spent a lot of time in tears!!! His white cell count is still 0 but he has started eating and it looks like we have the diahorrea under control at last!! The date has been set for the transplant but I have not been told the date yet but as far as I know all is going full steam ahead in Germany with the donor so horray for that. I have strained all the muscles in my back from sleping in a chair in IU for three days so I am in agony. I am longing for a slice of normality in my life.....Lord if you can hear me please heal my baby boy and give us our life back.

24/07/2009

Reef has finished his chemo and this round has knocked him quite badly. His white cell count went down to 0.1. A normal baby is 14. He got an internal infection and was on 5 different antibiotics. He got sores in his mouth and stopped eating for 2 days. He was feeling very miserable and has had 2 blood transfusions and 1 platelets transfusion as he started to bruise and bleed. He is getting better really slowly. We are used to him bouncing back quite quickly but this time his body seems to be taking its time to recover. His white cell count is at 0.3 at the moment so he is still at risk of picking up another infection so we are watching him closely and being strict on who sees him and touches him. We are really hoping that once he does recover we will be able to go home for a few days for a much needed break. Once he has recovered they will perform a bone marrow aspiration to see if we have blasted the 2% cancer he still had. If we have, he will go onto a maintenance program until the bone marrow transplant due to take place in 8-10 weeks time. If he is not in remission, they will redo one of his chemo blocks (not nice at all) in the hope of getting him into remission. We have found a bone marrow donor match in Germany. He is a 10 out of 10 match so we are really blessed. There is a guy here who has been waiting 7 years for a match…..so God has given us a miracle! We have raised enough money to be able to pay for the donor to be harvested and for the bone marrow to be brought directly to Reef. Without your donations this would not have been possible. I would like to thank you all from the bottom of my heart for helping us. We will be eternally grateful. May God bless you all.

16/07/2009 - DONAR FOUND!!!
Brilliant news! We have found a match for Reef. The German donor is a 10/10 match. Reef is very ill at the moment due to a very low white cell count from the chemo. He has diahorrea and vomiting and sores in his mouth and he has a fever. He really is not well. He is on antibiotics and hopefully should start recovering next week. In the mean time they are doing the last blood test on the German donor and Reef to make 100% sure they are a match and we will have those results next week. Once that is complete the ball will begin to roll towards the transplant and this could take 7-10 weeks.....a long wait I know but one thing I have learned from this cancer game is everything is a "wait and see" basis so best to take it one day at a time. So thank you to each and every single one of you who is praying, sending love, supporting us and donating time, money and blood. Thank you thank you thank you. None of this could have been possible with out you all. We are truely blessed with support and may God bless you all. I can not say thank you enough. Your all our angels and we love you. All our love, Ryan, Lyds and Reef.

13/07/2009
The Beeld: http://jv.news24.com/Beeld/Suid-Afrika/0,,3-975_2538157,00.html

03/07/2009

Reef is on his 2nd week of methatrexate chemo. Its terrible stuff. His liver has been slightly damaged by it and the docs are keeping a close eye on t in case he goes into liver failure. He is handling the chemo very well otherwise. He is smiling and starting to chat away in baby language. He can now roll over and it looks like he will be crawling soon. We have had some news that may set him back a bit. His cancer is not in remission as previously thought and he has 2% left and they can not seem to kick that 2%. If he does not go into remission before the transplant his chance of survival goes from 60% to 20% so we really need him to make remission. Please pray that he makes remission. This cancer is a terrible disease and you constantly feel at war. Thank you so much to each and every single one of you who is praying for us. God is listening. Today is a sad day as one of the other children on the ward passed away and its such a harsh reality but one I refuse to think about with Reef. He is a survivor and a fighter and he will make it through this. I WILL NOT LOSE MY BABY BOY TO THIS HORRIBLE CANCER.

01/07/2009
Reef's family and friends would like to thank all those kind people who have made donations to help Reef get better. R230 000 of the R350 000 needed has been raised! Please keep the donations coming, we're nearing the target! Many Thanks!

30/06/2009
Hi there again,
Reef started his chemo today so please pray that it goes well and he does not have any side effects. Everyone has been so amazing. I am just so happy to know that SA is such an amazing place to live and people are so caring and giving. One thing I have learned is never complain about people and how terrible the world is because actually there is still a lot of love in this place and I love you all and God provides for us and he will never forsake us. We just need to love him. Amen

29/06/2009
So after an amazing weekend (first one in 4 months!!) Reef and Iare back at the Donald Gordon. Reef has not started his chemo yet as his liver has taken a knock from last weeks chemo so they are waiitng for him to recover before they continue as he can go into liver failure! He is still smiling tho and happy as can be and getting cheeky We are still frantically raising funds as we need R350 000 because the docs have decided that we can not waste time in finding a match for Reef so they are looking in SA and in Germany and the total cost for the international search is R350 000. So far we have R155 000 so its going very well. Thank you to everyone who has donated. Your all special to us and angels in our hearts. We are so glad that we do not have to travel this road alone and having you all praying for Reef is what carries us along. I send out a huge hug to you all and pray that God embraces you and blesses you with happiness.

26/06/2009
Thanks to Talk Radio 702 and the Dis-Chem Foundation

As you may have heard on 702 this morning, Richard contacted the radio station's "birthday wish list" and they have been in touch with the Dis-Chem Foundation, which has in turn pledged R75,000.00 in order to facilitate the search for and screening of a suitable bone marrow donor for Reef.

08/06/2009
We urgently need to start raising money for Reef's bone marrow transplant so please if anyone can help with ideas for fundraisers or has companies that are willing to donate money or even if you can donate R50 it all helps. We have a raffle on at the moment to win a Clinique hamper to the value of R2500. you can buy a ticket for R20. Reef's banking details are above, if you need any records of the account etc we have a law firm handling the account so the money will only be spent on Reef's medical expenses. I know there are so many scams out there asking for money but this is not one of them and we will provide any proof you need for verification. Thank you for everything and never underestimate a prayer. If you can not donate money, donate your blood or platelets and if you can not donate those then donate your time in prayer to the LORD GOD for he will make the final decision for Reef's life. Love you all

05/06/2009
Sorry I have not posted for a while, things get hectic around here sometimes. So Reef sailed through his 2nd block of chemo and the docs were so shocked at how well he is doing and it looks like he is in remission.....yiipppeeee yay. At the moment though he has suffered some horrible side effects from the chemo. He has has severe constipation for 4 days and they gave him every medication under the sun including Morphine for the pain which did nothing and eventually he had to have an oral enaema to clear him out. With passing of the hard stool he tore his anus and now can not sit with out screaming in pain. His little bum is raw and extremelly painful. He also has a very high temp that does not break easily and he is feeling rather miserable as you can imagine. We had a meeting yesterday with the head of Oncology and the way forward for our baby boy to survive is a bone marrow transplant. If we can not find a match, the chances of him relapsing are very high and once that happens its kinda game over!!! Harsh reality hey The best match would be a sibling but I have no other kids so we have to look on the SA Bone marrow registry. It costs an arm and a leg to match potential donars so we have to choose carefully who we will test. I feel like I am playing russian roulette with my childs life!! If we don't find a match here we will have to look overseas and most likely have to have the procedure done there which costs a gazillion trillion pennies. Once we have found a match and paid over our lives we then run the risk of his body rejecting the marrow or him getting an infection and and and the list of if, buts and maybe's goes on and on and on. This road is long and very very hard. The ultimate decision always lies in God's hands and so I hand it all over to him now cause I am getting a headache just thinking about all of this. If you are thinking of wanting to be tested as a potential donar for Reef, think again cause its too late. The registry will not test specifically for Reef. Don't ask me why cause I don't know. You can put yourself on the registry if you feel like you wanna make a difference to someone elses life. I would encourage you all to do so cause in the future somebody will be in my position and if you are already on the registry you can then be considered. It only costs about R500-R1000 to be put on the registry so I think its worth it. So for now we will wait to see if we can find a match for our sweet boy and pray that God continues to bless us. Love you all and thank you for verything your doing for us.....it works in Jesus name Amen!

25/05/2009

After an amazing week at the inlaws with Reef as strong as an ox, we are back at the hospital for the second block of chemo. This one is stronger than the first one and contains a chemo called "code blue" and is an electric blue colour!!! This one kills off his immune system very quickly and keeps it low for an extended period of time and it takes the body that much longer to recover so we are looking at being in the hospital for at least the next 2 months! He has been knocked by this chemo this time but he is still smiling all the way. The only side effect so far is complete exhaustion which s not too bad. Keep up the prayers as God is doing such miracles for this boy and he is listening to you all and granting our wishes every step of the way AMEN! Love you all

23/04/2009
Reef was placed in ICU at Garden City, over the Easter Weekend, as he started to suffer seizures. the fisrt of which lasted 3 hours. At GC he recieved wonderful care under Doctor Bartlett and was released after a week. However the source of the seizure was never determined, they assume it was a reaction to the intra-thecal drugs administered into Reefs CSF.

Before he was discharged back to the Donald Gordon, a Lumbar Puncture was done. and the results had pathologists baffled - they were unsure whether Reef was fighting an infection of if his Leukemia was fighting back.

Prior to the seizures, Reefs was in partial remission as he had a count of 2% however of that 2% 1% showed amyeloid markers. after he left ICU, this seemed to be on the rise. so the doctors decided to administer the next phase of chemo.

In this stage the treatment is harsh as the chemo is strong and administered over a period of 10 days without a break, so it is expected that Reef's body will take a knock.

But he is coping well with the treatment and we await further information.

Eileen used to work with Lydia so we know the story all too well and it is horrible.

I will keep continuing to pray for Reef and the family. Poor little angel.

Praying for them

praying for them

poor little baby!! praying for him!!

14/09/2009
Reef is hanging on by a thread.......docs gonna harvest Ryan's white cells tomorrow to try get him through.

Reef has been lying in my arms for 2 days. i have watch him get worse and worse. he is on morphine drip, 4 kinds of antibiorics, he is too weak to even open his eyes.......tubes and wires everywhere. my poor little angel. i love you so much reef and can not live with out you. rest now let mommy and daddy fight this fight for you. God will help us

Anyone maybe have an update of little Reef? They are constantly in my thoughts...

Hi girls,

For those of you who are following Reef's progress, got an update from the All-hands-on-Dec website: (The messages)

2009/09/18
hi all. I came home at about 9.45 last night and wanted a last word on Reef before i went to bed, so i called the hospital and they gave the phone straight over to Lydia, who was sitting right there in the lounge. She was so chirpy after the day. Basically, Wed night she said that Reef was desperately ill again and she and Ryan got on their knees and begged God to either take Reef and take away the pain, or to heal him and give him life... She said that then at 4am on Thursday (his birthday) he got up, pulled out pipes and leads and tried to crawl out of his cot... he had had a horrid rash all over his body from all the meds, and that disappeared. The doctors had harvested white blood cells from Lydia all of Weds, and those were given twice to little Reef yesterday and mom and son spent the whole day sleeping. they slept through his whole birthday, and last night when we chatted, he was very peacefully sleeping but once through the day, she had a glimpse of her little boy again, so guys and girls, we gotta just keep the prayers going out there like CRAZY to make God understand that he just has to heal Reef and let him go home with his parents. Please God. God bless Madri too in this dark time for her and her family. And Blake too. and Michael too. I have not heard anything from Lee re. Bryce this week, and I am going to have to try actually phoning her sometime today or this evening, cos we all want to know how her munchkin is doing. have a great day all. and keep the prayers loud and often.. xx
Kim

We are witnessing another Miracle girls, our God is GREAT!!!

Praise the Lord for the good news received today

21/09/2009
Reef had 3 spoons of purity yesterday and I am so happy i could poo in my pants God is taking such good care of my little angel. His temp has been stable today and his new bone marrow is starting to grow. I am the happiest mommy right now

19/09/2009
Hi everyone, I am sorry I have not posted in a while. This week has been the worst ever!! We almost lost Reef on Monday nght and then again on Wednesday night but some how he pulled through. My heart has broken over and over again watching him suffer!!! I pray that noone ever has to go through what Reef or us a s a family have had to go through. I am soooo exhusted that both Reef and I have literally slept for the past 3 days. We managed to sing happy birthday to Reef at 5pm on his birthday and he was not really awake to enjoy it. Thank you to everyone who sent wishes and prezzies, prayers and love. When I tell you we can not do this without you all I really mean it!! The prayers and srength from the outside world is holding us together. You are the reason God's ears are ringing. Reef looked so aweful this week, he gt the worst body rash I have ever seen and he blew up with fluid. On his birthday though he did a turn around and the rash started to dissappear. His cells are starting to grow slowly and everyday little by little he is getting better. The road is still very long and I am sure our hurdles are not over but for now there is peace and calm as Reef sleeps to try to recover. I too am sleeping as I feel I can nt face the world right now. I am too broken! Ryan is also trying to be strong but he is crumbling under the pressure. He has been sucked dry of white cells to help Reef to recover. I love you my sweet husband. your the best daddy ever. Reef is so blessed to have you. I thank you God for blessing me with such an amazing baby who is a fighter and for a husband who loves me and Reef to the ends of the earth. I thank you God for making Reef better. In Jesus name I praise you God in the highest for with out you nothing is possible. Amen