Update from mom: So, DJ has been having some issues with his ostomy at the moment. I am changing 5 bags per day. We are heading back to Boston on the 15th of this month to see his GI doctor up there. In June, we meet with the Boston surgeon also. The old ostomy has started giving some trouble, so they are going to put him to sleep and see how it is inside. I know he will be having another surgery, but I will know after they go inside. I will keep you posted on that.
Just recently had a transplant and is 20 days out and doing well. A rare condition in which the body stops producing enough new blood cells. Aplastic anemia develops as a result of bone marrow damage.
We want to take this opportunity to thank of you for the support and prayers. There are no words to express how much we appreciate all you have done for all of us. Sara's health and her daily care continues to require much attention. It requires to give her various medicines throughout the day and night, as well as caring for her feeding tubes, TPN nutrition, and ileostomy. Sara's syndrome of MMIH, which limits the ability to eat, drink, and void without medical intervention, continues to create new medical and emotional challenges as she gets older. For example, she is starting to question if she will ever be like her friends, who don't have medical issues and dont have daily vomiting episodes. Now that she is in first grade, she is comparing herself with her classmates and sees herself different. Yet, she is happy at school and loves to learn new things. She is very smart and creative.
Fantastic news she is in remission with her Brain Tumor and Cancer Free. May God continue to bless her. She will continue to take pills at home and continue to go in for treatments. She still has skin cancer they are treating that. Her liver was affected due to treatment.
Update from mom: Hello Mrs. Grace, Jada is doing well. Have not heard anything on her CT Scan so I'm assuming it was okay. I just wanted to share this exciting to news with you.
Update from Mom: Nathan actually is been sick a lot this year. He now has strep and a strep rash. Please we will take all the prayers because Nathan will need a lot of dental work reconstruction. He also is loosing his right hearing and just found out his mental delay is due to radiation. The positive news is that Nathan will be going to Disney in a couple of weeks. I'm sure he will be extra happy his bday is May 19th and we will be in Disney. Thank you for taking time on checking on Nathan.
Urgent prayers for a 15 year old young man with AML leukemia who has relapsed. Please let's pray for his complete healing and for strength for the family at this difficult time. Let's pray they are able to be home for the holidays.
Ryan's mom is asking for prayers for Ryan. He had transplant surgery last year. Here is her email to me: “I tell you Ryan had not recovered from Transplant surgery. His body is very weak and delicate. He was hospitalized last week with a pneumonia, but is out now and recovering slowly.”
Ryan has an appointment tomorrow with Oncology, and mom is asking for Prayers for some good results. Please pray for wisdom for the doctors on how to best treat Ryan, and pray for healing and peace for the family.
Praise God, Nathan's brain and spinal cord tumors are stable (the cancer is there but not actively growing). He has been 10 months off his last chemo and so we are moving scans to every 6 months. Thank you all for continued prayers!!! Psalm 118:1 “Give thanks to the Lord, for He is good; His love endures forever.”
She was hospitalized a few weeks back with RSV but doing much better and at home. Pray that Sara can continue to attend school and continues to be able to stay as healthy as she can.
Urgent prayers for an 18 year old with multiple relapsed cancers, as well as his mom battling cancer herself.
A young lady with Hodgkin's Lymphoma, please let's pray that she goes into remission and has complete healing. Let's pray that she can be home with her family's for the holidays.
A young lady, age 7, diagnosed with leukemia. Family in need of prayers.
Mason - Leukemia
Doing so much better since his long stay last month in the hospital. Mason counts have recovered nicely. Mason has had bone marrow and spinal tap and is in remission. Continue to pray for Mason that he continue to stay healthy and at home for the holidays.
Shania has been sick for 2 months now. Her body is not in great shape, because of the chemo and the cancer. Pray for healing for Shania, and blessings on her and her family.
Please continue to pray for Naja's family who are mourning the loss of their beautiful daughter. Our thoughts and prayers are with them, especially through this holiday season.
He has Austism and is developmentally delayed. He has major GI issues, Chronic Constipation, can't pass air on his own, living with 2 illeostomies, a G tube and a picc line for nourishment.
Please continue to pray that the Doctors can help DJ with his health concerns, pray that his mom can get a a Nurse to help to care for him.
No new updates. Please pray for her and her family.
Please pray for Isaiah - who's a new patient with A plastic Anemia. Mom and Isaiah recently had Covid. They are doing much better.
Special prayer request for Trista Dre's mom who has lots of health issues and was recently in the hospital due to blood clots and other health concerns. As well as her dad who was recently hospitalized after a bad accident, he had to undergo emergency surgery. He is doing well and currently in a Rehab facility to get stronger before he is sent home. Let's pray for a speedy recovery.
In memory of our son Dylan, who would have been 22 on December 9th, as well as Dre on December 12th, as well as all our CWOP angels. We continue help others in Jesus name, amen.
Please help us bless Local Families this holiday season, who are struggling with sick children and financial hardships.
Logan's Lemonade Stand Donation
On Monday afternoon, Chris and I were on our way to see an amazing 8 year old young man & his family from Logan's Lemonade to receive a generous donation for Charlotte's Web. On our way, we were discussing Dylan as we often do & what do we see is this bright beautiful double rainbow - you always send us signs and always at the right moment.
Please say a prayer for the Deer Family. On Friday evening, Naja went home to be with the Lord after a long battle with Sickle Cell Anemia. Chris, Mallory and Charlotte were able to spend a couple of different days with Naja & her family to spend time with her and do some crafts. When we asked the mom what we could get for Naja, she said “Naja would love to spend sometime with children her own age, she had been in and out of the hospital for the last 7 years, and was unable to spend time at school or home with kids her age.”
The family is doing a Celebration for Naja, instead of a wake, they will have a Fashion Show theme. It is what she wanted and it is going to be “Fabulous” (Naja's favorite word, and she loved Fashion). Please contact Chris if you would like to help donate for the funeral cost ad the Celebration.
This was an update over the summer. Overall Sara is about the same, poor digestion and having to be on TPN nutrition which is not a great option due to side effects but its the only one at the moment which helps. On a good note she loves school and doing as well she can.
DJ - 14 years old
Please Pray for DJ as he needs so much care, pray for his mom Audrey for much needed strength and rest while trying to managing College & everything. DJ's Dad passed away a year ago so things have been so tough on this family. Please pray that the Doctors can get some answers on how they can help DJ.more. The good news
is we were able to provide cleaning to help Mom get DJ's rooms cleaned, she was so grateful for the help. Thank you Portia.
Praise the Lord, Nathan's MRI results came back and the tumors in the brain and spine are the same size they were in January. Everything is still stable and so he can continue to stay off of his chemotherapy. Duke will scan again in 3-4 months. Thank you all for your continued prayers.
I wanted to share the back to School photo of Keyonna who is doing wonderful.
She has a Brain tumor & Langerhans Cell Histiocytosis. Currently still getting treatment, has lots of swelling in her feet and legs, headaches, nausea. Please pray that the side effects lessen, the Doctors are able to shrink the tumor/get rid of it once and for all with her treatment & Shania will stay in remission.
September is: #ChilhoodCancerAwareness
These Milford cuties are going GOLD today to raise awareness, as well honoring the memory of our son #Dylan, #Kaylena, #Finley. Thank you to all the Milford Schools spreading awareness for childhood cancer. We have lost to many children to cancer in Milford. Spread awareness let make a difference, we need more then 4%.
His story is inspiring. His smile and strength will never be forgotten. Charlie you have touched so many lives along your journey. You have been surrounded by amazing support with family and friends and we will be sure to keep your legacy going strong. Rest In Peace. #CapalboStrong #fuckcancer
No words can adequately describe the heartache that I feel this morning for this Beautiful family. This young man was an inspiration to so many & had smile who lit up a room. He gave such a valiant fight and with such dignity, made a huge impact on so many lives . No one should have to endure this once let alone many times. Today Let us pray, don't take life for granted. Make a difference, love your loved ones, reach out to those who are dealing with this gut wrenching pain everyday. Let your loved one know you care even when it's hard or you don't know what to do or say. It means more the you ever know coming from a family that understands. Today light a candle or put out your hockey sticks in his memory. For a hero that will never be forgotten who put up such a valiant fight. We all will continue to make a difference to change pediatric cancer, no one should have to go through this, we need to find a cure! Sending a huge embrace, love, light to this family. Rest In internal peace Charlie
This loss hit me hard as he & Dylan has such a similar journey & fought so so hard. Please pray for this family.
Sara loves school but due to her energy levels she is not very active in school, She gets up several times at night and does not get enough rest, Sara is not responding as we would like to the medical treatment because her digestion is very slow and the doctor believes that COVID affected her condition too. Please continue to pray for her, so that she no longer has TPN and can eat through a feeding tube. We live day by day but for God everything is possible and prayer has a lot of power. Thank you.
Nathan - brain cancer
May is Brain Tumor Awareness month. Nathan has been battling brain cancer since 2009 and it spread to his spinal cord in 2011. His tumors have progressed 7 times since the initial diagnosis. He has been on 9 different chemotherapy or targeted treatments with thousands of shots and pills that he has taken. While cancer may scar you physically, mentally and emotionally, there is beauty in each scar. His story is being written with each scan, progression, stability, and treatment. There is hope in spite of each heartache, laughter in every good report and prayer with each impending scan. A cancer diagnosis changes you. You can push through each day waiting for the day to pass or you can find joy in the moments and be thankful for each day you have been given. The month of May is a time to reflect on the journey, mourn with the families whose battles have ended, pray for those still battling, and rejoice with those who are in remission. #prayingforacure #gogreyinmay #braintumorawareness
Izzy - relapse Leukemia
Great News Izzy is in Remission: Izzy's counts are all looking good. She has a surgery consult scheduled for Tuesday to get her port removal on the books! As long as we can get surgery scheduled in the next 6 weeks, today was her last port access. Izzy is smart girl, and made sure to negotiate that today's needle to the chest earned her some Boba tea...and a couple of macaroons from her favorite Chewy Boba Company USF. #izzystrong
From DJ's Mom: I do hope all is well with you. Dj is coming along each day. I thank everyone who prayed for him. We don't have a go home date yet. I was told yesterday he won't be able to eat for a long time or drink. The distance between his intestine and his stomach is short so he his having dumping syndrome. He will be fed through is veins but does have a long term effects. They are trying to figure out his feeding will go since he keeps dumping fast as soon as anything goes in. Anyway please keep us in your prayers because I feel so tired physically and emotionally and once again thank you and grace for your love and support and for the works you guys do daily. Sincerely Audrey and David.
Nazear is doing well, will be going on his wish trip in August to St. Thomas.
As you know Finley lost her battle last May. Our thoughts and prayers are with this special family! Recently mom gave birth to Boy Callum Finn — Congratulations & thank you for all your support to CWOP in memory of Finley.
New Diagnosis: 5 year old Boy — AML Leukemia, currently at Yale. Please pray for him and his family.
As you know May is a tough month for many of us who have lost our children. To all those children and all that are still fighting, I ask if you all can help in any way it would be greatly appreciated!! Please share... 8 years ago on May 21st after a 7 year battle with Leukemia we lost our beautiful hero who showed us all no matter what you are going through love like it was your last day! He smiled everyday and touched so many lives, made a difference in such a short life. I just wish he didn't have to suffer so much and I could have traded places with him. Dylan said, “mommy, don't be mad I have cancer I lived a good Life.” Words of a Hero and I was blessed to be his mommy. I stand today to make a difference in the lives of children with cancer . I need your help to make this happen. Thank you all in advance...If you can make a donation, sponsor a sign or donate a raffle prize it would be greatly appreciated. Spread the word, share our page. May 21st was the day he passed, it would be greatly appreciated. This will run for until our Dylan's Fortunato Golf outing which is on June 10th, 2022.
So Nathan broke his arm this weekend at a youth retreat. Since he didn't get back until later yesterday evening, we went to the orthopedic doctor this morning. His elbow is broken in two places and it's crisscrossing. They think he is probably going to need to have surgery, but they have contacted Duke to see if a specialist there can look at it and what they recommend. He is one tough kid.
Nathan just went back for surgery. Dr. Kiernan gave us a few different scenarios of what he may do depending on what they see when they try and put the bones back together. He said there also is the possibility of another surgery being needed after this one. Surgery should be about 1 1/2 hours or so and then we will know more. Thank you all for your continued prayers. Nathan has a great attitude and we have phenomenal doctors. God's got this! "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 ESV
From Sara's mom: Thank you very much for all your prayers. Sara is a very happy girl and loves school but due to her energy levels she is not very active in school, She gets up several times at night and does not get enough rest, Sara is not responding as we would like to the medical treatment because her digestion is very slow and the doctor believes that Covid affected her condition too. Please continue to pray for her, so that she no longer has TPN and can eat through a feeding tube. We live day by day but for God everything is possible and prayer has a lot of power. Thank you.
He didn't make counts 570 instead of 750. He was supposed to have his 4th round of methotrexate this week and be done with round 4 of chemo but we're on hold until his counts come up. A month before he starts Blina which is a new drug.
Izzy - relapse Leukemia
Great News for Izzy. She is now officially done with treatment!! Please continue to pray for Izzy that she stays in remission.
Please pray for Mallory DePaolo, that surgery goes well and she has a quick recovery.
Please let us pray for Trista's Dad/ Dre's Grandfather who took a bad fall and had to have 9 stitches on his head, and that the bleeding he has resolves it self.
Pray for our country, especially for Ukraine.
Please pray for Caylee who is currently at Yale and has Covid and was intubated. Today, mom says that she is doing a little better and they are lowering the settings on the machine. Please continue to pray she fully heals from Covid and can be removed from the machine.
Please pray for Marvell...
I began to notice a growth in my neck near the final quarter of the year. At first I didn't take it seriously because I believed it would go away, but after two months, the growth got worse and I started experiencing extreme amounts of pain. I was no longer able to sleep on my back or on my stomach at night or else I'd wake up to extreme pain in those areas in the morning and this finally prompted me to go to my primary doctor. My doctor ran X-rays and blood test but, couldn't find a conclusive answer so he referred me to doctors up at Yale New Haven Hospital. Here they gave me CT Scans, Ultrasounds, and a Biopsy to confirm their suspicions after their evaluations. A week after the biopsy they called us back a gave us the bad news that I'd been diagnosed with Stage 2 Leukemia (Large Diffused B Cell Lymphoma). I was very emotional and the same day I was hospitalized for chemotherapy and I'm currently receiving treatment.
The family all had Covid and all are doing much better. Sara is back at school and doing as well as can be expected.
Thank you from Rowe's family
Good morning Grace,
Nathan Norman - long battle with Brain tumor
Praise God, Nathan's tumors look very stable. They have not increased in size or enhancement. He has been on the chemo now for 6 months. He has had a few side effects from the treatment, therefore, since things have been stable the last two scans, we have all decided for him to take a break from the chemotherapy to allow his body to heal. He will continue to have scans every 3 months and if there are any concerns, symptoms, growth or enhancement, then he will start back on this treatment. Thank you all for your continued prayers for Nathan and our family.
last chemo is scheduled for February 28th. Let's pray that once and for all she will be cured of the leukemia. This was her second battle with it.
Please continue to pray for Grady, he has been in Boston for the last 3 months and now has to go back to get chemo in Boston as well. His mom is unable to be with him because she has been very sick with pneumonia it has been a really tough time for all of them. Things haven't been going well. Let's pray that the chemo and radiation Grady receives helps get him in remission.
Lixy is having lots of sever side effects from her transplant. Please let's pray that her side effects get resolved & she starts to feel better.
One year ago, sweet Kaylena gained her Angel wings. We have missed seeing her adorable face and precious smiles. In our hearts always.
This sweet girl asked me to stop and get donuts for everyone at clinic today. (And then told me I couldn't sit by her because the donuts need their own seat.) Today she gets a CBC and CMP. She'll come home with her port accessed tonight, and then come back tomorrow morning for her second to last spinal tap with intrathecal chemo. Let’s pray that Izzys spinal tap is clear and she has little no side effects. #izzystrong
Please pray for Ashlyn — We are back at Yale. She was here last week with a virus and was discharged and is back now with another fever and Covid :( we just had her sisters tested and they have it to and so do I... please pray tha Ashlyn will recover from Covid and they are able to keep her stable and she will be able to be home for the holidays.
Mason was off chemo for a few weeks so his body and counts recover. He was able to receive chemo this week and is stable. Please pray that he continues to do well and has little to no side effects.
Please continue to pray the McGuire family as they continue to grieve their daughter Finley.
Please continue to Pray for Ethan. He was able to come home from the hospital, and his infection has cleared up. Ethan will be having surgery soon to remove a kidney, that is not working properly.
He was also informed that he will not be allowed to play any contact sports(Ethan played lacrosse, and comes from a big lacrosse family).
Please pray that the surgery is a huge success. Pray that Ethan will recover better than expected, and that his remaining kidney can provide everything his body needs to stay healthy. Also pray he finds new interests and /or non-contact sports to play, that he will love. Please also keep the family in your prayers.
All leukemia- please pray for this little girl that she has complete healing and stays in remission.
Overall is doing so much better &He will be having a pet scan on June 15th! Let's pray they he continues to stay Healthy & in remission.
3rd battle with Cancer. Has already had a bone marrow transplant by his brother that was a match. Please continue to pray that the treatment works & they are able to cure Charlie once & for all. Pray for the family's strength during this difficult time. Charlie is currently at Boston Children's Hospital getting treatment.
Please continue to pray for Mason! He is doing as ok & Happy to be finally at home. He has been going to lots of appointments. The latest orthopedic appoint showed that Mason femurs are out of socket & causing him pain. Please pray that the doctors can help help keep pain under control & resolve this issue when he is a little stronger. He also had a heart appointment as well It went Okay..they sent home on 48 hour Holter monitor so that an electrophysiologist can see how his etopic issue is. His right atrium is still enlarged and aortic aneurysm has only gotten slightly bigger but not concerning right now. Let's pray that Masons heart stays stable. Please pray for the family's strength to continue care & that Mason is stable while at home with his family.
who passed away this weekend from a long battle with brain cancer.
Getting treatment at Yale overall doing ok. We pray that he continues to do well with no side effects from treatment & stays in remission. Pray for his family for continued strength through this journey.
Please pray for Irene who is dealing with Covid on top all the other setbacks from long term cancer treatment.
She is dealing with lots of serious setback from her blood disorder and had an allergic reaction last week that was very scary. Daniella & her parents provide beautiful cakes to terminally ill children. Please pray that they can provide care to her mom.
Please pray for my Jordan who may need surgery on his elbow wiring in MRI results &for my husband Anthony that his heart appoint coming up will be good news and his aneurism is stable.
I had mentioned that Naz was having some issues with his heart & would have to have surgery...Well I have fantastic news with further testing and all prayers Mom has said that the doctors have said that he is stable & they will keep an win his heart but as of now he doesn’t need surgery.
Ryan is home from Yale & doing much better after dealing with an infection. Please pray that Ryan will continue to stay as healthy as he can & continue with little to no side effects. Pray that he continues to be cancer free!
Currently in treatment - please pray for Brandon & his family while going through his intense treatment.
Please continue to pray for Logan Emmanuel's family as they had to lay there baby to rest last month — he was only 3 months old.
Also please continue to keep Kaylena's mom & grandparents in your prayers as they are dealing with so much heartache from the loss of Kalena... pray for strength, healing, for this family’s heartbreaking loss.
Ryan was diagnosed in July, Mom says he is doing ok with treatment. She curtly stopped working to stay home with Ryan to help with his treatment. Please let us pray that he will be cured from this cancer and he will have little to no side effects. If you would like to "Adopt" Ryan for the holidays please contact myself or Chris.
Please also pray for Logan. He is 3 months old and has spent his entire life in Yale's NICU. Born Aug. 2 early. Had problems at birth. Got sepsis, and had to remove 75% of small intestine. Praying that his colon is still attached. Please let us pray for baby Logan that he won't need a colonoscopy bag and sepsis goes away and that he will be able to go home with his family soon.
Please continue to pray for Charlotte & the DePaolo family. Please pray that the doctors can figure out the best way to treat her anxiety, and stop the panic attacks.
Happy 4th Birthday to Sara. Mom says Sara is doing ok. Sara was recently hospitalized due to her stomach condition. Let's pray that she continues to do as well as she can & stay healthy. Pray that the doctors can continue keep her stable.
We met this Izzy with Dylan at Camp Sunshine. After being in remission after 6 years Izzy has relapsed & now has to start chemo all over again. She has been going through so much & feeling really sick. So far has been in the hospital for several weeks enduring lots of setbacks but the good news is her ANC is 500. Hopefully next week she will be able to go home. Let's pray she continues to have an elevated ANC & when they do the bone marrow aspirate that she is in remission. Pray she is able to stay healthy with minimal to no side effects.
From mom: We know for sure now that Izzy is once again fighting leukemia. We will have an exact diagnosis later today as to which type, but her oncologist suspects it's the same as last time. (A.L.L.) Her counts are too low for surgery so she won't get a port right away. They are going to do a PIC line temporarily and plan to place her port in a few weeks. Tomorrow she will have her marrow aspirate, and a spinal tap and she receives her first dose of chemo. I'm sad, angry, and so many other emotions, but Izzy isn't. She's just brave. She knows she'll beat this again. All children's is doing an amazing job keeping her comfortable and happy, and reassured us that she has really good odds of beating this cancer again.
Passed away after a long hard battle.
Julia Caoilainn Adams
December 2, 2016 - March 15, 2020
Please let's pray for the family for peace, understanding, much needed strength....especially her little brother. So saddened by this. May she rest In peace.
Both are doing well, overall no issues. Recovered well from the flu. Pray they continue to stay healthy.
Please continue to pray that she does well.
Forgot to update y'all on the lil nodule/mass/lump in my pelvis... They're having me do 6 weeks of PT to see if it helps alleviate discomfort, then we can discuss biopsy and resection. A biopsy and surgery in that area would be a big deal, and not easy to recover from. I don't think I can handle that right now, with everything my body has been through. So I'm willing to try PT. Send good vibes that it's benign please.
Due to isolation, the family is unable to visit Mason. His surgery was cancelled due to CoronaVirus. Please pray that he continue to stay healthy & soon they will be able to visit Mason.
Message from mom-
It was so painful to leave this smiling face not knowing if it will be days or weeks before I see it again. My eyes hurt from the tears. When you see someone crying over a parade not happening or a concert cancelled or sporting event, remind them to be grateful that this isn't their reality.
She Is doing well/ Due to COVID 19 they had to reschedule her Make a wish until next year. Pray she continues to stay Healthy.
I met her a few weeks ago to help with some food gift cards. She wasn't feeling well at all and mom was very worried about her relapse. Please pray that they can get her in remission with minimal side effects.
In treatment since April 2018
Only girl of 3 siblings was in the hospital for quite sometime, had lumbar puncture & it was negative, Thank god. Currently she is also home in isolation until she has to have chemo. We also have helped them with gift cards; due to isolation, parents are unable to work and finances have been extremely difficult. Let's pray they continue to stay healthy & she is able to continue to get treatment. Also so very grateful for the help we were able to provide.
Doing pretty well; met with mom last week to help with food cards, some toys, & pjs for her & her brother who had a birthday. Mom was so beyond grateful for everything. She said things are tough but hard for her to ask for help, but so grateful that we reached out to help. Please continue to pray that Shania stays healthy.
With sickle cell disease, an inherited group of disorders, red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells (sickle cell anemia), and can block blood flow causing pain (sickle cell crisis).
Chris met with family to help with food gift cards because the family is severely in a financial crisis due to her recently having a Bone Marrow Transplant. She is a single mom & has to stay home to take care of her as well as they have to stay in isolation due to CoronaVirus. Carness will also have to have a stem cell Boost.