PLEASE SHARE THIS!!! UPDATES: Day 22-Darien got his third blood transfusion today. Hes been very tired and sleepy for about 2 days now, hell perk up soon I hope. Doctor says his counts are extremely low and that we must be extra cautious with him. He had a 7 day device inserted in his arm today that his nightly injections will feed in to so that he isnt getting punctured with a needle every night, he already has a bruise from every single one because of having such low blood count. It will be removed next Thursday and a new one put in for another 7 days. Thank you Jesus he did not have to be admitted back in today! Day 21-The visit from Dariens home infusion nurse was pleasant. She did his blood draw and took it to the lab. We got a call from the hospital a few hours after she left telling us that his counts were too low and he needs to be at the hospital first thing tomorrow for a third blood transfusion and the nightly shots must continue as well. :-( Day 20-trying to psyche myself up to give Darien his shot for the night. Ugh! He dont like it and mama dont either! Hope it goes well tonight. Hes doing ok. Doesnt like taking all these meds all day long and I dont blame him. Nobody would like it! Praying his lab results come back good, they dictate whether he gets a few days without the nightly shots or not. He needs and deserves a break. Day 19-We had a good day! Thank you Jesus. Day 18- Darien has his appetite back, hes eating well. He has lost ten pounds over the past 2 weeks so Im very happy to see him eating normally. His limp has disappeared, he is walking straight and hasnt complained of any pain today!!! Thank you Jesus. He doesnt have all of his strength and energy back but I can see him becoming restored.I learned from a dear friend today how to visualize my prayers and conversations with Jesus in my imagination. It is amazing! Watch yourself in your mind sitting and talking with Jesus, it takes you to a whole new level! Prayers for peace and love to you all. Goodnight. Day 17- Today was an awesome day, Started off by going to church with mom while my husband stayed at the hospital with Darien. Church was great, the message and prayer were both powerful! Leaving church I called to check in on Darien and was told that the Doctor was ready to release him because his fever had not returned for 48 hours. HES AN AMAZING GOD! When we got to the hospital I was given discharge instructions a novel! And several prescriptions to pick up at the pharmacy. We were also assigned a home health care team that will come to our home twice a week to draw blood for lab work then we must return to the hospital on Friday. Darien was so excited to know that we could come home for a few days. Hes doing quite well so far. He doesnt like his daily injection at all, and its really tough seeing him so scared every time. I am feeling so overwhelmed with everything, but I know God can help that too. There are so many things that I just dont have answers to right now, and thats not easy to deal with. Im continually praying. My heart is so troubled about everything were gonna endure and that he has to go through. I pray that our stay at home goes well and that he can be at peace and enjoy the few days before we start all over again. Bless him Jesus with peace and strength and endurance. And please let this chemo and medicines do only what they are meant to do and keep him from the side effects of every round as You did in the first round! In Jesus Name, AMEN! Day 16- Darien is 24 hours past the last infusion of round one chemo, and is finally unhooked from his IV fluids!! He has fallen asleep so he doesnt even know yet lol. Hell be so excited not to be locked to that pole! We had a HUGE scare today, his IV line was caught on his foot when he was gonna push himself up in the bed and it snatched his chest catheter and pulled the stitches so tight he was shaking from the pain immediately before we even knew what had happen. The nurses rushed in and helped! OMG that was so scary! Today I was taught how to care for his chest catheter and how to give his nightly injections. Not happy about giving my child a shot every night when I know hes terrified of needles but I know he needs the medicine. I pray its easy on him to adjust, and I pray I can do it without him feeling much pain. Hes been such a good sport through this round, bless his heart! Please continue to pray for us. Thank you. Day 15- Darien had his fifth and last chemo treatment for the First Round today. He now has to suffer through a shot every night at bed time for ten days to try and keep his blood count stabilized and strong enough for Round Two of chemo which is proposed to start 10/6/2014. This sucks for him to have to endure yet more needles! Im not happy about it at all! Hes had so many needle pokes since this started hes terrified of even seeing a syringe! Today he had a wonderful experience with a life size ninja turtle he giggled till he was exhausted and fell asleep. Precious moments! He hasnt had a fever in quite a few hours which is looking promising. The anticipated trip home has now been set for possibly Monday, if there are no more fevers. Your prayers helped him through round one of chemo, please keep praying, we have a long journey ahead! Thank you! Please search for and like his new page Prayers for Lil Darien made by Ashley Locklear . Day 14- Dariens blood count dropped unexpectedly and he needed a blood transfusion today. His fourth day of chemo went well. His fever hasnt ceased so we were told that the trip home isnt happening...YET! IM STILL BELIEVING! Sheryl Brady Ministries, Praiseandworship Red Springs ,The River Church, and all of you around the world have blessed us tremendously. Thank you for prayers and encouragement and lifting us up as a family! Day 13- Chemo went very well today. The nurse said if he keeps doing so well with the chemo there is a chance we can go HOME soon! until next cycle! He has two more days of chemo to go on this cycle. IF we get to go home, he isnt allowed to go to school or any public places but he can have visitors at home as long as they arent sick or contagious! Praying hard! Day 12- on 9/16/2014 we have received the results of Dariens second biopsy. The report showed that Dariens Neuroblastoma diagnosis was confirmed by the biopsys and we have to continue with treatment. I felt so disappointed, my heart ached BUT GOD!! Even though we got this bad news, Im still waiting on a praise report! It may not come when we want it, but God is always on time! Day 2 of round 1 of chemo just started. We are on a 5 day cycle of chemo which is the maximum for a child. My heart is so heavy, and I pray for something, anything to show up as a mistake and all this disappears! Darien has done well on chemo both days with only small side effects so the devil still isnt getting any credit at all!!! Day 11- We still dont have the results back from second biopsys, We did finally get MRI results and what they found was that the size of the largest abdominal tumor is 4.2x3.8x5.4cm. And that there is a lesion on his pancreas that they dont know the significance of right now. First round of chemo started around 5:30pm (EST) there are two parts and each will last 30 minutes. Darien did well with the chemo today. I pray that he can continue to be strong throughout this. Day 10- Today was a great day!! Darien asked to eat!!!! he wanted his and Ninja Turtles favorite, PIZZA!!!! I 911d papa johns!!! I was so glad he wanted to eat!!!! We also had a wealth of visitors today, his brothers, cousins, Praise and Worship, the Chapel Hill Fire and Rescue, and friends from work!! He was so glad to see everyone and enjoyed his time with everyone that has stopped by for a visit or called him. Thank you all for your prayers, prayer is changing things everyone please keep the prayers going up!!! Day 9- Darien was stronger today, he had a huge amount of support with a large part of our family and friends coming by to visit, Thank you all for making him smile!! And for following him to play room, ((His Entourage!!))) Day 8-Overnight Dariens blood count dropped extremely low so at 8:00 AM this morning they had to give him two units of blood. Also his fevers have been hovering around 103.8/103.9 and occurring more frequently than before. At 10:00 AM (EST) this morning Darien went into surgery to have a BROVIAC IV Catheter implanted into a central vein his chest and neck. The catheter will have two protruding tubes to allow administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. While in surgery the doctors will also biopsy the tumors and take another bone marrow biopsy as well. SURGERY WENT WELL, DARIEN IS IN RECOVERY. we havent been able to see him yet. Waiting...... Day 7-Some test results and imaging has been completed, others are still in progress. What weve been told so far today. Darien has stage 4 Neuroblastoma and is severely high-risk and it is wide spread throughout most of his body and in his spine, bones, and all 4 limbs. He also has two tumors; one in the back of his belly and one above his kidney. The doctor says that there is another issue that is going on but it isnt clear to her yet so she will get back to us when she finds out more. Please continue your prayers and sharing Dariens story! Day 6- were finally getting the test done that weve been waiting on since Friday! The neuroblastoma is in the bone marrow and there is a tumor in Dariens belly the size of an orange. Weve been admitted to the UNC Chapel Hill Childrens Hospital. There are still more tests to run and results that are needed. Please continue your prayers! I was not going to do this but from what Ive learned Im afraid that this could happen to other children and I wouldnt wish this on anyone! Our son Darien Sinclair (5 years old) started to complain of severe leg pain about 3 weeks ago and I took him to the ER, they did blood work and saw that some of his levels were low but sent us home anyway saying that it would pass in a few days. It didnt, it got worse, so next I took him to his pediatric center, the doctor there barely looked him over and told me that it was just a virus that causes muscle pain and it should pass in a few weeks. Well it didnt pass, the pain got even worse in just a few days and he started limping and couldnt walk or climb stairs. So i took him right back the third time and I refused to leave without answers!! On this third visit the doctor ordered blood work immediately and then xrays the next morning. The blood work again showed levels lower than normal and she compared them to the ER bloodwork and said that the drop was so drastic in those few days that she suspected Leukemia and sent us to the cancer center for testing on Friday 9/5/14. This is day 5 of what seems like a never-ending nightmare. Day 1- 9/5/14 First visit to the UNC Chapel Hill Cancer Center. This day consisted of Blood work, a urine sample and a bone marrow biopsy along with a few other tests. After hours of waiting we were told that Darien had cancer but that it was not leukemia and that more tests were needed to determine the type. A special dye was needed for these next tests. He was prescribed a high strength of pain medicine to take every 4 hours for the severe pain he has and we would have to wait until Day 5 for more testing because they needed the special dye. Day 2 and 3- we were waiting on the shipment of dye from Canada and controlling the pain as best we could with the medicine. It doesnt make it go away but it helps enough to calm him down for periods of time. Day 4- we were rushed to the ER by ambulance with a fever of 102.5 that is constant. We were released and told that the Cancer Center doctor would follow up with us the next day when we returned. So we are controlling that with a fever reducer to keep it as low as possible at all times. Day 5- we were told that the type of cancer is Neuroblastoma and the severe pain and fever were a result of that but until the test are done with the dye the location and several other factors are still unknown. He was given morphine for pain and the dye was injected and is supposed to circulate throughout his body tonight and be ready for the scan and some other testing first thing tomorrow morning. So here we are, waiting.... I know that there are a multitude of people sending prayers and organizing functions to assist us and we cant thank you enough, we ask that you continue to pray with us without ceasing. This is a very tough time and Im trying to give everyone answers that asks for information as much as I can. If it takes me a while to get back to you please forgive me, we have a lot going on. I will make sure that I get back to every single one of you as soon as I can. Once again, thank you all for the prayers and concern and everything that you all are doing to help us! If you all would share this post on your time line so that it reaches other prayer warriors all over the world that would be awesome. I know that prayer changes things! You can also read Dariens updates on Prayers for Lil Darien You can help support Darien at gofundme/support-darien
Posted on: Sat, 27 Sep 2014 01:23:42 +0000
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