Last Monday my son had a spinal tap done as part of long term maintenance for his ALL treatment. He gets one every 3 months. He has had several of these and never had abnormal results. The doctor called me this past Thursday to tell me that his WBC was 6, they like it to be below 5 I guess. I was told that they found 1 abnormal cell that was "suspicious" in his spinal fluid. We cannot do another spinal tap until Feb 25th, then wait days for the results. Maxwell was VERY sick the entire week prior to the spinal (104 fever, put on Tamiflu for 5 days, received 3 rounds of antibiotics via his port). This was the first time he's been sick since he was diagnosed too. His ANC on the Thursday before his spinal was .4, and on Monday (the day of the spinal) it jumped up to 3.0. The doctor told me not to worry, that this is common, especially when a virus is involved but he wants to be "prudent" to make sure theres nothing going on, but HOW CAN I NOT WORRY??!?!?! I am BESIDE MYSELF wondering what is going to happen to my little boy. Also, the spinal tap procedure itself didn't go well either-the med's weren't working on him at all (Ketamine, Versed, Atropine) and they had to stick him twice...... Has ANYONE gone through this and if so, what was the outcome? I am just devastated that something else could be wrong. We have been trucking along through treatment so well, and them BAM, this....... He's on chemo everyday, how is it possible that the cancer come back in his central nervous system? He was diagnosed in August 2008 as pre b cell ALL low risk.
A VERY worried mama.......
We were just in an extremely similar situation. My 3-year-old daughter with pre-B ALL, who is in LTM, had "abnormal" CSF on 11/26/09 due to extra, abnormal WBCs. She had 8 in her sample. She was also sick before her LP (they had actually delayed it two days because of her illness], and, like your son, her ANC had jumped up past 3000. The sample was sent off for flow cytometry testing, which found no leukemic markers on these abnormal cells. All the same, we were told that a follow-up LP would be done, as the results were definitely abnormal.
Like your dr, ours said that the probability was that she had a virus (viral meningitis), but that they couldn't rule out a CNS relapse, so a follow-up LP had to be done after the IT Mtx had left her system (because it might "mask" abnormal cells in her CSF). So approx. 4 weeks later we had a follow-up LP, which found absolutely no cells in her CSF (was completely normal).
I can't lie and say that those days in-between the two LP dates were not extremely stressful. I tried not to think about it, and to realize that the probability was that she had not relapsed, but sometimes that was difficult. I would encourage you to search the older posts in this forum, where you will find my similar posting to yours, with some helpful replies. And I also have to tell you that I am stlll a bit "on edge" about it, as I sometimes fear that the IT mtx may have "masked" leukemic cells in that follow-up LP. We have our next, regularly-scheduled LP in one week, and I will breathe oh-so-much-easier when I find out that her CSF is still normal. That being said, my anxiety was greatly reduced by the clear follow-up LP.
We get so used to these LPs we stop thinking about them and their significance sometimes, and then something like this comes along and jolts us back into the reality of why they are doing them.
As for the sedation issues, can you ask your drs to try something else next time? I often hear not very good things about Ketamine. Our hospital uses Diprivan (propofol) and Fentanyl, which seems to work well.
I know your fear -- if you let it, it can become all-consuming. Try to keep it at bay as best you can, and remember that your drs told you not to worry, so must be reasonably confident that nothing horrendous is going on here (our onc was wiping away tears from her eyes when she told us they needed to do a follow-up LP, and that was truly what freaked me out more than anything!!!!!). Obviously there are no assurances here (part of what makes this whole treatment/disease so scary), but I wanted you to know, for what it's worth, that others have been in your shoes and come out on top.
WOW Ann, it sounds like we have both been in the exact same boat. I am SO HAPPY to hear that your daughter is still doing well and that nothing else was found in her spinal fluid. SCARY is an understatement as I know you know, but your post has given me GREAT HOPE that this could indeed be nothing. I still realize that there could be something, but after searching the net and finding absolutely NOTHING about it, I was terrified, so I came here. I will keep people updated with the news about Maxwell's next spinal, and will probably lose another 10 pounds from stressing out about it. It has all but consumed me, but its so hard to not let it. This is my son, I adore him more than life itself, and to think that after all he has been through that there could be MORE, it just is something I have a hard time wrapping my head around. But I will have hope, I will be positive and pray pray pray my ass off..........
THANK YOU ANN.....if anything, your post has given me a much better feeling about this, so until his next spinal, I will hold onto your story and pray that Maxwell stays in the same LTM boat as he was expected to. Hugs to you and yours Ann. THANK YOU.............
Praying for you and your son~ I have nothing to add to your situation but words of encouragement.
As for Ketamine~ I will never allow them to use it on Kaeden again. We were at the Air Force Base ER and they insisted on it instead of Verced. (for a head CT) They thought verced was too dangerous even though Kaeden had it all the time for his treatment. Ketamine is a terrifying drug! Kaeden was "awake" but paralyzed. His bed was soaked with tears. NEVER AGAIN!
I would love to be able to put your fears at rest 1000%, but perhaps 99% might help. The exact same thing happened to my son last summer where they found 6 questionable cells that they were not quite sure of what to make. Of course I was in stroke mode for the next few weeks waiting for the results of the follow up LP. I reasoned every possible scenario and temporarily pacified myself (superifcially of course) that it must have been a few lingering cells from an infection he had had the previous week (he was neutropenic for five days (first time after two years) with no other symptoms. Sometimes these cells from recent infections do cross into the spinal fluid. As well it sounds like there were some issues with your son's LP to begin with, so again, anything is possible.
As CK parents it is way to easy for us to always think the worst. Once the MTX cleared and they re did the LP , everything seemed to be in order, but I still was uneasy until the next scheduled ITMX, for as the previous post mentioned , one questions the results following ITMX. Having been through this once already, I know how difficult it is to stay positive with that dreaded monster lurking in the back, no matter how small you try to make him. Despite having one more LP to go, that experience has made the last six months more unsettling than the first two years LP's. Now I wait nervously a few days after the LP hoping I don't get "the phone call".
There are several parents who have gone through the same scenario following non specific infections. As five cells is there cut off, six cells, though perhaps not a cause for alarm, is definately better investigated just to be on the safe side.
Thank you everybody who has posted positive responses to my post. You all have given me hope that this is nothing....and the fact of the matter is, if there is something, theres nothing I can do about it. But until we get a yay or nay on it, I am feeling much more positive about the outcome of this, all because of your posts. I realize every child is different, but I think I have taken my hand off the panic button for the time being and am hopeful that this is nothing. I swear THIS waiting is worse than when i found out he had Leukemia. The waiting is KILLING ME. I actually told his doctor last week that it was unnecessary to call me so soon and give me such news when theres nothing that can be done about it. We have clinic on the 15th, TELL ME THEN so I'm only panicking for 2 weeks instead of an entire month!!!! Of course I want to know if something is wrong with my son, but if you can't tell me one way or the other for another MONTH, then please, don't tell me!!!!! AHHHH!!!!!!!
My love to you all, seriously, you have really lifted my spirits and I dont feel so alone in this situation anymore. Our children are SO SPECIAL to begin with and have been through SO MUCH.....there just can't be anymore bad news in the pipeline for any of us..........
Sorry you are going through this, but like you mentioned, this is something that has happened before and all was well - so there is much hope! I think the doc was telling you so soon because he may have wanted to know how your son was doing. The person that I personally knew that had this happen (I think there were 3 cells), they were told to look for major headaches in the next day or so and if so, then get her to hospital right away as it could mean a menigitis-type infection. They told her that if her child is well and continues to be well, then things are probably good and can wait - they didn't do a repeat in a month, they actually waited until the next scheduled one in 3 months and all was well. I think the docs just try to give you all the info, don't sugar coat it and want you to know so you can look out for possible side effects. Hope all turns out and I'm sure it will! Take care.
His spinal tap is on Monday at noon, so we should hear something HOPEFULLY late next week. He's still coughing though, so my fear is that he still has a lingering virus that might throw the spinal tap results off. Can we say PANIC MODE?!?! I will be sure to update, thank you for thinking about him. Please send lots of prayers and good thoughts his way on Monday.....
YEAH!!!!!!! Maxwell had his spinal tap yesterday and we got the results back yesterday too....and ALL IS GOOD!!!!!! Not a single white blood cell in his spinal fluid whatsoever!!!!!!! To say that I am elated is an understatement. I started crying the minute my husband told me over the phone. I feel like we won the lotto, and I guess in a since, we did, because we can continue on with life as we have been....... LIFE IS GOOD, LIFE IS GOOD!!!!!!!!!!!
Thank you to EVERYONE who posted and eased my mind a bit for the last month, and for everyones thoughts and prayers. I feel like the luckiest mom in the entire world right now....
Its me again. I posted a new discussion, but long story short, Maxwells last spinal two weeks ago showed 341 wbc's......he has no symptoms of anything going on. He was sick prior to the spinal and received IV antibiotics for it. This was about 2 weeks before the last abnormal spinal. He goes back tomorrow for another spinal to see whats what. They said they are concerned and are going to send out the specimen for more detailed testing. I am TERRIFIED you guys, absolutely beside myself terrified. 341 is a LOT of cells......someone, anyone, please pray for my son. And for me, I am about to lose it............
Yes...will be praying for you today and tomorrow. The stress of all this can just be so overwhelming. During any of our "wait and see" things....I try to be in the most peaceful place....doing peaceful things (for me that means walking my dog, folding laundry, and cleaning out closests and drawers.... of all things) Once I did laundry continuously for 3 days....washed and folded everything in the house just to keep my mind occupied. I have decided that the various waiting periods are the most stressful. At least once you know what you are dealing with.... you can get on with it........that limbo period is the absolute worst. I have also tried to drill it in my mind that even if things go wrong....there are many many things the doctors and nurses can do.
There are so very many success stories....even from those who have faced huge set backs....it is possible and I always hold on to that during the "wait and see" Will be waiting to hear how it all goes and praying in the mean time for your strength and peace of mind.
Im praying to report good news. My heart tells me differently, and Im having a hard time accepting that the worst case scenario could be our reality very shortly, especially while watching him run around like NOTHING IS WRONG. Perhaps Im jumping to conclusions but Im sort of jaded I suppose...........
Oh no! I am so very sorry you find yourself here again. There isn't too much I can tell you except that I will send loads of prayer and love. Remember that relapse IS NOT the end of the world. Many children are successfully treated. But- lets not go there! Prayin' that you don't have to learn any of that first hand.
Did not get good news. Leukemia cells found in spinal fluid. Begins new treatment that is supposed to be very intense. Started high doses of Decadron last Thursday and had a spinal with 3 different chemos. Spinal tap every week until June 10th, then begin 6 months of 3 day a month visits for intense chemo. 8 rounds of radiation in about a year..... Treatment plan is for 2 years. Anyone know what this protocol is? Of course I am devastated, I seriously cannot BELIEVE this......We were more than half way thru his ALL treatment, everything was going GREAT, and BAM. I just want to puke, and scream, and cry, and I am extremely angry at the world. All these emotions to deal with but life goes on as they say. Still have a house to run, a son to care for, a daughter to try and make her life as normal as possible just as Kindergarten is ending, a husband to support and a job to keep. Very very angry.........
I am absolutely devastated for you. So sorry to hear that leukemia blasts were found (tried to find a word more appropriate than "sorry," but was at a loss). You have every right to be angry, shocked, depressed, etc. I know that there are at least a couple of other parents on this board who have gone through what you are experiencing, and I hope they see this post and can offer some words of wisdom.
Please feel free to come here and vent whenever and however you feel like.
You son and entire family are in my thoughts and prayers.
I'm sorry to hear this and you have every right to feel those emotions. I do know of two kids at our clinic that relapsed, while on treatment, in their CNS. One of this kids got the standard CNS relapse treatment at that time (it was back in 2006) and the other, just a little later that year, got a very new CNS relapse treatment (first one to get it at our clinic - not sure of the name) and she has done extremely well. In fact, both kids are now 2 years OT and both doing fine and doing excellent in school, etc. and their everyday lives. This is so sad that it had to happen, but there is treatment and very much hope for a successful ending. There are a few kids on this board too that this has happened to so hopefully they will join in and give you some feedback on what to expect. I wish you the best.
Sounds like it is the same protocol my son is on. I'm sorry that you have to go through this. It is a very intense protocol and can be very hard but it does get easier and from what I have been told it has proven to be very effective. Also we were told the length of his initial remission and that it was CNS relapse and not BM meant that his odds are just as good as they were on initial diagnosis. And b/c you were more than 1/2 way through that would be the same for you. I totally understand your frustration, anger etc. If you need any info, someone to talk to to get an idea of what is ahead I'm here. I had someone that I found on here who helped me a lot, she doesn't get on much anymore but I know talking to her b/c her son was ahead of mine in treatment gave me an idea of what to expect so I could mentally prepare myself. Will say some prayers and let me know if you have any questions.
I'm so sorry to hear about your son relapsing in the CNS. The first time my son relapsed, it was a sock in the gut (also pre-B ALL, but no CNS involvement). Somehow you will find the strength to pick yourself back up and face the fight, not like we have any other choice anyway, right? My son relapsed at 16 months into treatment which then moved him up to high risk. Things were totally different from that point on, a constant battle. Now, three years since Dx and two transplants later, he is finally back in remission, but its been a long road. For whatever reason, some of these kids just get the short end of the stick and its so not fair, but our kids amaze us everyday with their strength, determination, and being wise way beyond their years. I will pray that this more intense treatment will do the trick to get your son't leukemia back into control.
damn, damn, damn. I am SO SORRY to read this. Please know that you have the prayers and care of an awfully lot of people. FYI, I have no idea where you live but I highly recommend the radiation dept. at the Univ. of Md in Baltimore, Md.
Be mad, fighting mad! this s#cks plain and simple.
You have all the right to be angry at the world.... be mad.... Damn it! We felt it that way when our kids were first diagnosed with Leukemia. What you and your family is going is just not fair. Please understand that we are all here for you. I really feel for you. This is a real lesson for all of us that we can never let our guards down. Chances of relapse decrease as years go by but can never say its gone away completely. Please understand that your beautiful child will be in my prayers.
Puneet (Stuti's Dad)
Oh- I am SO sorry! this damn disease is so evil. My heart is hurting for all of you. I hope that you have some support around you- you truly will need every type that there is. Pissy awful crappy disease. I can't stand it when it rears its ugly head. Sending love and positive energy.
Thank you everyone for your support. Im still in shock, I just cannot believe that he relapsed. Could this be a mistake perhaps??!?!? I don't know, I just have such a hard time believing this. Are there other families out there in the same situation who have had a successful outcome? I want to know what his long term survival rate is, etc......I know that it has decreased but I want to know what is what. All of this just makes me SICK TO MY STOMACH. I feel like we are going to do all this terrible treatment to him and then something else is going to happen. Is treating CNS cancer typically successful?????
I responded earlier in the post, must be you missed it w/ as active as this thread has been. Donavynn relapsed in his CNS as well on 9/8/08. We were told b/c his remission was longer than 18 months and there was no bone marrow involvement that his prognosis was just as good as it was initially. It was also helpful that he was still responding to treatment as he was in remission w/i a week - before they even started the new protocol. I can tell you that the treatment schedule is rigorous and it is very tough on the kid but it does get easier. If you have questions feel free to ask, he should finish treatment in November provided there are no problems and I can give you an idea of what to expect which can help you be more prepared and less scared, I had someone to talk to who was ahead of us on the protocol as well and knowing what to expect helped me cope so much easier. I can even give you tips on what meds worked best to prevent/treat nausea/vomiting for my little one. So I can't lie it is rough, but it is doable and it DOES get easier. The initial shock and all the emotions you are going through are totally normal and I remember them all to well, but I hope it helps to know that others have been there before and it will get easier and the prognosis isn't as bad as I know I initially thought. End of treatment is terrifying me at this point - no more chemo seems nice but it also means no more safety net and his body is on it's own and that terrifies the hell out of me. Anyway, if you wanna talk feel free to email me firstname.lastname@example.org.
Our story is very similiar to the one above...Niko was diagnosed at 18 months old, and relapsed, after 2 years, in the CNS during LTM. We are now 1 year into the new protocol. (AALL02p2).
Im sorry I do not have time to write alot, but after reading this I just had to let you know that Niko is now 4 and yes the protocol is brutal, but he has many many great days too! We still have a little over a year to go. You can email me at email@example.com