| SethAaronMccartney | Last Updated: Mar 04, 2009 |
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SethAaronMccartney
07/14/2002 5:00pm 7pds1oz6wksearl |
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Stories Hi everyone! I just wanted to update on Seth. Seth had his scans and they were negative for recurrent disease! Yeah! He is entering 1st grade this year and is doing wonderfully. Keep him in your prayers though...he is having migraine like headaches behind his left eye. We will be seeing the doc about this on wednesday. Pray it is nothing but allergies or something. It's gut rentching everytime he gets any sickness or pains anywhere. I think I will forever live in "Panic Mode" and popping xanax!!! Just an update!!! Today is December 5th-2007! Seth had his MRI today and his doc called and said everything looked good! No sign of cancer!!! Thanks for all your continued support. Keep Praying! Cyn. Hey Everyone!! It is June 12th 2007! Seth had his scans last week and I am estatic to say he is still showing no signs of cancer! We had his hearing done today and he has lost some of his high frequency hearing, but hey we can handle that!!! He is doing well. He has his days where he is not himself but overall...HE"S NORMAL!!! Yeah!! He will redo scans again in december! Keep the prayers coming ya'll! Thanks so much! Hugs to all! Cyndi Hey everyone! Today is April 17th! I just wanted everyone to know that Seth is doing awesome! He is "a great boy" and "wants some more toys.ie transformers" his words! He is helping me do this update! Seth gets to start kindergarten this fall so fingers crossed! I will keep everyone posted on his upcoming testing due in june. Thanks and God bless! Cyndi and Seth!!! Hello everyone! Today is January 29th, 2007! I am proud and happy to say that Seth is still NED!!! How awesome is that! His last scans were clean and his bloodwork was normal! He is still having trouble with his back in part due to the radiation. He is a real trooper though. We do physical therapy 3 times a week to help him with it. I am waiting to go back to the ENT doc to redo his hearing test. He failed it a couple of months ago. Seth had surgery to remove his tubes in his ears and a blockage. So fingers crossed that he will now pass his hearing test. I am hoping the tubes had something to do with the failed hearing test!!! I will keep you posted. Right now Seth is a happy 4 year old doing what 4 year olds do! He loves Power Rangers, Thomas the Tank Engine and now Teenage Muntant Ninja Turtles! And if he sees a half dressed female on tv he is like..."hey leave that here. I need to see the naked girls." Ughhh...nothing wrong with his brain! lol. Never a dull day! cyn. Hi! Seth had his latest MRI and PET over the past two weeks and everything looks good! His urine markers were in the normal range as well! I am over the moon. We will test again in 3 months. The only problems that we have really had lately is his back. He has alot of pain there because of the damage the radiation did to his spine. UGHHH. But hey we can deal with that. He is happy and smart. He seems to have so far elluded the hearing loss and vision problems and all the other things that come from chemo and radiation. What a true miracle and blessing he is!!! Hello everyone! I am doing double flips and dancing on the ceiling over Seth's latest scans! They looked good! So far so good. So we will repeat them again in 3 months! The only problem is wondering if I should get too excited that this will stay gone or continue to worry incessantley? It's hard to not think about the fact that this is a non curable cancer that likes to come back with a vengance! I am scared, very scared! How do you live your life with the unknown certainty that your baby will survive? It's an increadible evil that crawls under my skin day after day! But today...he's ok. Well tackle tomorrow one day at a time!!!! cyn. Hello everyone! First off I would like to say thank you for the continued support for Seth and I! Seth is doing well right now! Yeah. He is still having back pain but he is a trooper about it! He trys so hard to run with the other kids and is the slowest but he never gives up and keeps trying to keep up! On may 31st Seth will have his MRI to see whats going on with the NB. And on June 6th he will have his PET scan to ck on the NB too! So check back for updates. Keep the prayers coming please! cyn. Ok, so here is the story on Seth! It seems as though the lymph nodes in his left axillary are only slightly bigger. So they are not worried at this time. The lymphs in his abdomen that appeared on the other side of where the ones were from last time seem to be insignifigant at this time as well. AWESOME!!! I would be more over the moon if NOTHING was there. Its like cancer being there and laying dorment. But I will take the news that I finally have and run with it! I am really relieved. But as anyone who has children with a cancer with no known cure knows...the fear stays lodged in your head 24/7! Its like you just sit and wait and hope and pray. No, that's exactly what you do. You can't really do anything else. I guess I better get working on Seth's Freinds more vigilantly. The race is on! Thanks for the prayers everyone. Keep them coming. Cyn. Hello everyone! I have not updated because I still have no definte answers. Its rather confusing. I was told that he had increased size in his lymph node in his left axillary, however not that much bigger.???? He has decreased activity in his abdomen where it was intitally showing on the scans, but new activity in another part of his abdomen. If anyone gets this let me know. As for now I am waiting for the doctor to read the PET scans disk with the surgeon. They are supposed to call me about it. Ok this has taken a month since we started testing. Its soooo grueling. The doctor got the disk on Monday so hopefully he has read it with the surgeon by now. I hope to know something by Friday! Fingers crossed that everything is well! Oh, his HVA and VMA came up normal. Although that doesn't make me feel secure because we all know you can relapse with normal urine markers. I will exhale when the docs call me with good news!!! Will keep you posted! Well, I don't really have any news today. Seth had his MRI yesterday on the 14th. I went and met with the surgeon today. The lymph nodes that have been of concern have grown some. Not huge, but enough to palpatate. So we go to Duke next week and he will have the PET scan and then the surgeon and I will meet again and go over the plans for biopsy. This waiting seems to drag on and on! Seth on the other hand has been doing pretty good. He has been asking if he can go play soccer again and go to school! He is still his happy little self! Always smiling and hugging! I have no new news today. Going for MRI on february 14th. Then PET at Duke in NC on February 20th. The surgeon will then let me know the next step. Its agony waiting! I thought Id share a song that just emulates my life to a certain degree. Its so uncanny how I relate that I had to laugh alot when I really listened to it. Is Anybody out there? Does anybody see that when the lights are off that somethings killing me. I know it seems like people care. Because there always around me. But when the day is done everybody runs. Who will be the one to save me from myself. Who will be the one whose there and not ashamed to see me crawl.. Who's gonna catch me when I fall? When the show is over and its empty everywhere. Its so hard to face going back alone. So I walk around the city. Anything to clear my head. I ve got nowhere to go. Nowhere but home. Who will be the one to save me from myself. Who will be the one whose there and not ashamed to see me crawl. Whos gonna catch me when I fall. It may seem I have everything. But everything means nothing when the ride that youve been on leaves you feeling lost. Is anybody out there. Does anybody see that the lonliness is apart of me!
Well here it is the brink of the New Year! In about a minute or two a new year to be thankful for! It was July 19th 2003, just 4 days after Seth turned 1, that he was diagnosed with Stage IV Neuroblastoma. Today is January 1, 2006 and Seth is 3 years old! Kicking cancers' butt!!! I have a lot to be thankful for! Each day is precious and life is more valuable than ever. I treasure each milestone that he reaches and each smile that he gives me. This year is the year that I hit it full force with my personal crusade for Pediatric Cancer Awareness! It's going to get out there and I am going to let the world know that Pediatric Cancer needs everyones attention. As a shirt I designed says..."This is it!!! It's 2006, Let it be Known that Pediatric Cancer Awareness has arrived. Are you ready for the truth?" My personal venture to raise awarness and funding for Pediatric cancer is going to be part of my day to day life with Seth reminding me why I started this all and why I must not stop. Please keep checking this site for the future site of "Seth's Friends." It will be up and running in a month or two. I am excited at the avenues I am taking and the resources that I have that have offered their support and time. It is a 16 hour job. But every hour worth it. I can't think of anything more gratifing than what I am embarking on. I want to help the doctors and researches find cures for our children! Please help support "Seth's Friends" in the future when the site opens. This is it eveyone. "With these two hands and with this voice, I shall awaken a nation to unite in battle for Pediatric Cancer Awarness and Pediatric Cancer Cures!" Cyndi McCartney Hello everyone! I just wanted to update a bit more on Seth. Seth still has not had his lymph biopsies yet. On the other hand I have to tell you how awesome the glyconutrients are that I have given him for the past month and a half! He has so much more energy. He is complaining less of back pain! I can just say it is helping him so I will keep him on it. If anyone wants info on it let me know and I can email you the website. Also I want to thank all of you that I do not know in my physical presence for writing in and giving me words of hope and encouragement! You have no idea what a blessing you all are. You are spiritual friends. Thank you so much! cyn. Hello everyone! I have not updated because...well I have no new news. I am still waiting to find out about his MRI reports. They were not Fed-exed to his doctors in North Carolina like they were have supposed to have been. Long stressful story there! Seth will have a lymph node biopsy in the coming weeks. They have to see the MRI to determine where they will biopsy. It is my understanding that he has several in his left axillary arm pit, and many in his left adominal cavity. I believe he has one in his left node in his neck. The waiting truely is painful. On another note. I started Seth on Glyconutrients over 3 weeks ago. I was told that it was not a good idea to use them because they are not FDA approved. HMMM...well after careful consideration and myself trying it out for several weeks prior I decided to give it to him. I thought to myself...the darn chemotherapy was not FDA approved and I allowed him to receive that, .and at experimental levels. Guess what...he has more energy now. He had lost it. And all I can say is it has made a difference for us! I will update more when I find out something new. For now like before, we all wait! Prayers please! cyn Seth had his extensive MRI and bone marrow biopsy today! Now we just wait and wait for the results! Really is hard. It's hard to wait on results like this. It even harder to live day to day with FEAR that never goes away that your child will relapse. As I was told it will most likely happen because there is no cure for his type of NB! And then I was told early this week that it didn't matter when we caught the relapse because the chance of cure was 0!. I guess I am optimistic in believing that the experimental treatment he underwent has cured him!!! I hold out hope everyday with fear that still surrounds my every thougtht! Today as I sat in the waiting area while Seth was undergoing his surgery and MRI, I watched ALL the families together talking, crying, laughing. And I realized that I am so freakin alone in this! I usually sit by myself. Since the beginning 2 years ago. Now I will say that in the immediate beginning there seemed to be a surplus of well wishers, however that quickly faded and all was forgotten. My Dad comes from out of town to be here for us when he can. He has a demanding job and is extremely busy so its hard for him. No one even really calls anymore to see how Seth is doing. It's ok and I have total understanding that people are busy. It's just hard to do and do it alone. I know as Seth gets older he may ask where his daddy is or why its just us. I hate the thought of that. Sometimes I wish I had someone to take hold of me and reassure me that its all going to be ok. Someone to share every moment of what Seth is going through and know that they will always be there for both of us. It has been an exhausting couple of months. I finally got his pediatrician to refer us to a orthopedic surgeon for his back. The findings were from an MRI that had been done in August by the oncos here. The orthopedic saw a differentiation in his lower vertabra on the MRI scan. 3 vertabra were lite up different colors. Indicating that where Seth was having pain was finally validated. Not dismissed as "wanting attention" as the I was often told. So Seth had a PET scan at Duke last week on the 1st of November. On the 3rd of november the docs from Duke called me and said that the PET findings were as follows...He had a left axillary enlarged lymph node under his left arm and several lymph noded in his left abdomal pevlic region. Ok big blow..not expecting that. We were looking at his back problem remember??? Now we have 2 sets of problems. So on the 4th we were set up for another MRI of his back to compare to the one from August. Had to halt that due to them needing extensive MRI readings since new findings from PET. So now we sit and wait as we get scheduled in for the MRI. More waiting!!!! Then bioposies to follow. Of couarse more waiting as we get that set up out of state at Duke and then wait on results. All in all its alot of waiting that has been long in the waiting from the onset of Seth's initial pain. He started complaining back in late July. How do you ignore any child who has had cancer with extensive "experimental" treatment not done before by them and ignore ANY sympton that is constantly complained about? Thats all I have for now. Just more waiting and the unknown. Is it recurrance? IS it radiation damage to his spine? If it is it is said to be degenerative. How nice. Such a great outlook. Cancer or spine that is degenerating? Or both? I have learned that you must speak up when you believe something is not right. Even if it goes against what your docs say. Communication is key. I will update as I can. Please continue to pray for Seth. He is so beautiful and innocent in all this. For several months Seth has complained of back pain. He had a MRI in August and the oncologist said that despite him having an obvious protrusion in his lower back, that he had no evidence of a tumor. They said that I should follow up with his peditrician if I wanted to for futher pain complaints. So I went to my pedi who said I had to go to my onco. Needless to say I was beyond frustration. Seth had continued to complain more and his energy has slowly slipped away. I insisted that he be able to see an orthopedic doctor. So we got the appointment with the ortho doc and went a couple of days ago. The doc there looked at the previous MRI from August done by his oncos and said it looked like there were changes in his lower vertabre.. They were different colors on the scans. So they fitted Seth for a body brace and then told me that futhur testing would be necessary to determine what it is. I was told it could be either relapse of his NB in his spine or possibly damage from radiation he received in that area. This is not good news. It's hard to say that Geez, I hope its radiation damage thats degenerative or relapse of cancer. Both SUCK!!! Prayers please if you can. Seth needs them. October 8, 2005
Hello everyone! I wanted to let everyone know that we are back from New York and that Seth's tests are encouraging. He has no active disease. No cancer in the brain, which is what we were afraid of! No Leukemia!!! However he does have growth in his abdomen and neck. The two places where the cancer first originated. They will be testing on these lymph nodes. They are like a time bomb from how it was described to me. They cannot remove lymph nodes, so we have to basically wait. Hard to grasp! He is having what they describe to me as late effects of chemo at the present time. He has low platelets at times and stays sick!!! He has been sick for 2 months straight so far. He has bone pain and muscle pain. He is playful, but tires easily. He will tell me when he wants to "go night, night." He often asks to see his "doc Castles." That is one of his doctors. That is when I know he is really feeling bad. So far there has been no survivors of Seth's type and metastisized cancer, however we want to be the first!!! I am so glad he is doing ok right now, but I must tell you that it is soooo hard knowing that at any time he will relapse and that the odds are not in his favor to make it untill his 5th birthday. So please everyone, continue the prayers...we love them. Thanks to everyone...Cyn. Hi everyone! Seth and I are in New York City in Manhattan where Seth has been undergoing testing at Memorial Sloan-Kettering. Seth has some more testing on MOnday to do an MRI of his head and the orbits of his eyes. We will find something out more on monday. I will keep everyone posted as I find out more. Seth is sick, but in his usual good spirits!!! I took him to Toys R Us in Madison Square and he was bewilldered at how big it was. 5 stories of TOYS!!! He just got out of the hospital 2 days ago so I am trying to get him out and about for some fresh air! We will hopefully be able to go to CEntral Park on Tuesday afternoon. We will see. I have to say I am very homesick from Zachary and Julianne. They miss mommy as much as mommy misses them! It is hard being here alone with no support. I see all these families and it is hard because it is just us. Know what I mean??? Any way more tommorw. Cyn.
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