Ok, so my son is a year OT and he has his first "major" health issue. I say "major" because it is the first one to send me into a tailspin. He has had a cold for about a week--runny nose, little cough but nothing serious. Fast forward to Friday evening--I noticed a sore on his lip and inside his mouth. Ok that could just be a cold sore. Then saw he has a huge angry bruise on his upper arm (size of soft ball) it also has a hard lump under skin. He can't explain where it came from. Then later another bruise on his chest, then one on his hand, then foot and knee. All appeared between Friday and Saturday night. No reason for them. Then noticed petechea (sp?) on his feet, legs,stomach and behind ears. This morning he now has 2 sores on his tongue and 4 in his mouth and petechea all over and about 6 unexplained bruises/lumps.
My husband took him to clinic this morning, its been about 3hrs and they are waiting for blood results and Onc. I know a virus can cause these symptoms and if he only had one I could talk myself into that but all at the same time--YIKES! I am freaking out.
This being the first real issue after treatment--I am a mess. I just wonder if there will be a day that cancer doesn't rule my world?????
Well I just got a call it is confirmed relapse I don't know any details Holy Crap!!!!
Nana, I'm so very sorry to hear this news. Angry, sad.... too many emotions to even express. You've been such a wonderful support for so many people on this board, please know we're here to return the favor. Thinking of you and Jakob during this difficult time but also KNOWING he will beat this dreadful beast for good this time around. Mile high hugs to you....
Thanks to everyone. I am truly in complete shock--1year and wham!!! Even our medical team is shocked. Jakob had wonderful counts at last check(about a month ago) and now I am sitting in a hospital room waiting for platelets..... So low that he is urinating blood???? How does this happen.
Ok what I know so far is that we are going to transplant. No ifs ands or buts. This decision is unanimous (sp?) with all Drs here and all that have been contacted. What we are waiting on is the BMB tomorrow and then we will decide what plan to follow to get us there.
I don't know when I will update. I have now to learn all about transplant.
Thank you all so much for the support.
I am sitting here in our hospital room in tears. I am absolutely completely shocked and heart broken for you. Beyond angry and so devestated! I cannot believe Jakob made it to a year before this happen. Cancer sucks. I know Jakob will beat this, once and for all. If he ends up on COG 0433 to get him back into remission, feel free to send me a PM or email. We can exchange notes. I know right now you feel angry, upset, confused, hurt...feel all of that. You have a right to feel that, but also know I am confidant Jakob will beat this.
Karen and Leann (CNS relapse, MRD+ 11/15/11)
I cannot begin to imagine how heartbroken, shocked and scared you are right now. Please know that you, your son and your entire family are in my prayers for strength and healing. Hope you know how many people are holding you close and sending your their love and comforting thoughts...
I am so truly sorry to read about Jackob. This is just so unfair and it, well it sucks!
My son is getting ready for transplant, he relapsed several weeks ago, and if you need any info on the transplant road I'll be happy to try and help. You and your family are in my thoughts.
I'm sitting here stunned as well, and so sad and angry. You've been a tremendous source of strength and support for me, and for so many here - and it's that strength and support that I hope is there for you now. Sending every hug, every prayer, every bit of love and support that I can.
One thing (of the many) that I have always valued you for is your practical, no-nonsense advice to so many of us, that was always helpful and supportive at the same time. Sounds like you've kicked into gear already, learning about transplant. I'm glad you have a plan. Transplant is daunting, but this is Jakob's chance to kill those [so many expletives want to come out I wouldn't know where to start] evil leuk cells into oblivion. We are all here for you, just so sad and angry that Jakob must go through this, but eager to support you in any way possible.
I hadn't checked in a for a couple of week and this was the first post I saw. I hate this so much. You have always had wise words and offered much support on this board during the three years I have been coming here. Please know your son and family are in my thoughts and prayers.
I have no words to tell you how hard we are taking this here too. I feel like I could vomit this very moment. As you know Marin also has the MLL rearrangement and you were so supportive and wise during our first few days after diagnosis. You talked me off many ledges. I would be lying if I wasn't admittedly SCARED to death for our children. Your Jakob's success was something I too was clinging to in hopes that Marin would be once and for all rid of this ugly disease. Now' I'm extra worried for the both of them. I am cussing, kicking and screaming for your family tonight. I wish you nothing but success in your new journey fighting the beast. F*#@K!!!!!!! I HATE cancer and it's everlasting hold on us all. All of these relapses are making me wonder if there ever are any real happy success stories out there anymore.
I always thought that you are among people from safe zone.......I always presumed that 4-5 months OT shall be enough to reach the safety net,,,,Hope the remission comes fast and stays that way ever after...Our prayers...No other relapse news was so hard on me as this one....I learnt of 4-5 from these boards...coz Jacob was among the already won figure for me.....Now my worries are increased.....
Like everyone else, I feel horrible for you. Starting over sucks and is so frightening. Always remember- relapse CAN be beaten!! There are kids who relapse, do chemo and go on with long lives. And the fact that he relapsed so far out from treatment holds even more hope in my opinion. Sending you all the positive energy and light that I can.
I am devastated to read this. The relapse protocol is tough, but having been off treatment for a year does give Jakob a bit of an edge, his body has had time to heal. Transplant was a terrifying word for us, but Maddie is now 4.5 months post transplant and doing quite well. In fact, we saw her primary BMT dr. tonite at a hospital function and she is giving a lecture tomorrow that features Maddie. We too followed the same relapse protocol as Leanne and had a matched unrelated donor transplant on 7/20/2011. There is a wealth of information on the ACOR relapsed ALL site, although, in the beginning of the relapse protocol, I read nothing, was too scared. Then, when Maddie was being admitted to the BMT unit, right before we walked through the double doors to the isolation rooms, a patient had a sign on her door that said " Transplant day +101" it was the best thing I'd seen...it gave us confirmation that lots of kids do well with transplants. We saw that patient tonite, she has started her college classes and is working part time. I know you are terrified, angry, disbelieving, and shocked, but Jakob CAN do this. If you want to talk, email me.
Forgive me if this doesn't make alot of sense--
We have a plan for starting treatment tomorrow. It is still waiting for some final test results to finalize. We are not going on study. We are doing 5days of Clofarabine,Etopisode,Cyclophosphamide. Jakob has had VP16 and cyclo before but clofarabine is new. Any of your experience to share? Depending on LP results from today---we will put more or less LP's throughout the month
I would really like to say Thanks for all the messages of support.
I have absolutely nothing to say, except that I am sorry and so bl***dy angry to hear this. I am shocked. I understand that typically the first year of OT has the highest chances of relapse; however one does not expect this specially once you've gone through the treatment. I am glad to hear that you've been able to keep some amount of sanity while making some tough decisions and proceed ahead. Do remain strong and, always remember, you and your family will overcome and beat this dastardly disease and we are all here with you as you go through this rather tough journey.
God Bless and my prayers are with you...
My son just did the same 5 day treatment, and I will not lie, the Chlofarbine kicked his little booty. We found the relapse (10% Leuk cells 5 days before checking in for transplant). The 1st night was the worst, Daniel had a fever all night and it went up to 106.8 and heart rate went up to 191 at one point, they were able to get it under control but I was a wreck watching. Over the next few days Daniel had bad nausea and retching, he developed a full body chemo 'sunburn' (they called it a rash). The sunburn itched like crazy, he was on benadryl and atavan while I slathered him with aquaphor and that brought him some relief. He lost all of his appetite and is still on TPN and Lipids. We are 3 weeks out from the chemos and still waiting for his counts to rise. Onc came in yesterday and said maybe next week we would do the BMA to see if the Leuk cells were knocked down and then we go straight to transplant. Also, these last few days he has had severely swollen gums and few mouth sores so get them to stay on top of that. D is also still getting a fever each day, he will be fever free all day and around 8 each night his fever goes up to around 38.8 then slowly goes down, we have had every test and scan run and they can't find a cause for the fevers. D is still cranky and doesn't have much energy but does play in his bed. This will be a hard round for Jackob, and you, but it is doable. Please feel free to message me with any questions. I don't have good wi-fi here at hospital so it may take a while to respond. I've been thinking about you and Jackob these past few days and I'm sending you a big hug.
No advice on Jakob's specfic plan, as Leann's relapse protocol is three reinduction blocks before transplant. Block one is 28 days long with vcr, pred, doxo, IT triples, and since her plan is modified, she also gets Velcade. Block two is inpatient high dose Ara-C and block three is five days of VP-16 and Cytoxan. Hugs.