The Leukemia & Lymphoma Society Community : Popular Threads - My Child Has Cancer

H1N1 Vaccine

communityreply@lls.org — Thu, 19 Nov 2009 23:50:00 GMT

http://www.youtube.com/watch?v=Tb6j7qMFy2c&feature=related

I was going to have Chz get vaccinated this week. He told me about this girl who got dystonia 10 days after receiving the vaccine. He says he would rather wash his hands frequently and stay away from sick people. "It happens to 1 in a million and so does my leukemia after getting my MMR vaccine!". Aaahhhhgh! Our GP is against it. But our onc highly recommends it. The things we have to deal with.

What would you do?

Suggestions to teach a 2.5 year old to swallow pills?

communityreply@lls.org — Tue, 17 Nov 2009 06:06:58 GMT

Hello All. My 2.5 year old son was DX in April with ALL pre-B. Today we just started LTM, so we need to give him a pill or two every night. Right now we are mashing up the tablets and putting them in sorbet (non citrus and non dairy) or ice cream, but life would be much easier if he could just swallow the tablet with water. Does anyone have any recommendations for how to teach my son to swallow a nasty tasting pill whole? Thanks!

Protocol Errors

communityreply@lls.org — Fri, 13 Nov 2009 00:36:03 GMT

I just wanted to let you guys know, that even some of our road maps may have errors on them. We are on AALL0232, and today we were at clinic for an LP on day 29 of maintenance. I questioned our np as to why he was supposed to also receive his PO MTX on the same day that he receives IT MTX (as it says on our road map--but seemed a little much to me). Sure enough, she called and verified that that is in fact an error for RER kids, and that they should not receive PO MTX on the same day as an LP.

So frustrating and makes me feel insecure when these things pop up, like I constantly have to be on top of every little thing...

Nerve wracking and so frustrated!

communityreply@lls.org — Mon, 16 Nov 2009 22:55:51 GMT

Donavynn had a fever yesterday so we went to the local ER they drew cultures and labs, gave him a dose of antibiotics and we were sent home b/c his ANC was 1200. Today he had clinic for Erwinia. His temp has been fluctuating between normal and like 100.5, so I asked if they would draw labs again to see if he does spike what they want us to do. The doc said no, that we would have to go to the ER if he spikes and go from there which basically pissed me off b/c we live 2 hrs from the hospital and we were there this morning, they could have at least done that to help me relax. Consequently my stomach has been in knots all day as his temp continues to fluctuate but not reach high enough for them to take notice. I'm still concerned however b/c his temp is still rising it may not reach that 101.5 marker but it keeps going above normal. So I'm irritated and frustrated and want some answers. We just got home Friday from his radiation (he had 8 days of cranial radiation) prior to that stay he was in for a fever so he went directly from the hospital to the Ronald McDonald house and now we may be heading back up tonight. I just wish he could catch a break. He has had a cough for 2 months that just won't let up, which is pretty typical for him during the winter months. I'm just so irritated at this point I want to scream

Epidemiology of childhood cancer??

communityreply@lls.org — Tue, 14 Apr 2009 14:42:56 GMT

The forums usually have very concrete questions and answers, so I thought that I would throw out a more abstract discussion that I have not seen posted anywhere........

Since Matthew is at school today, I have a bit of time to post a question that has been absolutely driving me to insanity for the last two years. Since this is a large forum of parents with children who have cancer, I figured, it's a good place to get a lot of opinions. Every breathing moment, consciously and subconsciously, I ask myself, how did my child develop this horrible disease (in my sons's case - t-cell ALL) What happened to the perfect system of cells that all of a sudden decided to go and get so confused and screwed up???? I have researched theories, yet none seem to give me answers to my questions, as every child's case is different. Yet it is shown that , for example, ALL has its highest incidence in 3-5 year old BOYS - Why? Next time you go to your clinics, take a look around and notice the amount of small boys, it's incredible.

Since I have six other children who are perfectly healthy, I often analyse what was done differently about the last one. The only varying factors are that he may have been exposed to more EMF due to a damn portable phone I had close to his crib (which is now in the garbage); a new plastic crib mattress (which really smelled awful of plastic - we all know how bad plastics are); his toddler bed used to back onto a wall which contained a 240volt dryer plug (?- more EMF) and he was the only one of my kids who had a second ultrasound (which I know that more and more mothers are being told to get while pregnant). The last factor which I also wonder about is that a few weeks before he was conceived, my husband was spraying some fruit trees with regular insecticides - which we don't routinely use - and during this application, the pump he was using broke, leaving him with a pretty good mist of poisons blowing up in his face, which bothered his lungs for the next few months. Other than the above, I can think of nothing else as all the other known factors which may/may not influence the incidences of cancer had already been addressed, i.e. breastfeeding, excellent diet, no vaccinations, no other meds, no electrial tower, cell phone waves, microwaves, etc., no use of harsh household chemicals, no wireless applications in the home whatsoever, etc.,..............or is this all just a random event which occurred with all of our kids?????? And the funny thing to me is that no one at the hospital really seems to care how it comes about as we are never asked any questions about lifestyle, diet, environment, etc. after our kids get diagnosed....

Anyone else wonder ????Can we prevent it from coming back??????Or do we just wait out the rest of our lives simply day by day????The fear of the unknown is a terrible way to live.......especially when it comes to our children........

Any thoughts, or should I just stop wondering ???

]

maintenance and thinning hair...

communityreply@lls.org — Tue, 17 Nov 2009 13:14:28 GMT

my son seems to be losing his hair and we are 5 months into maintenance. It was growing back so thick and even had natural highlights in it. He wanted to get a trim and ever since then his hair seems to be thinning. Anyone else experience this? My son is in high school and is not happy about this. Our doctor never told us this could happen so we were caught off guard about this.

My son wants to know if he loses it again will it come back right away? Would love to hear your experiences about this. How long did hair loss last, if it thinned did it get thick again? Thanks for your input.

Michelle

RSV - Respiratory Syncytial Virus

communityreply@lls.org — Mon, 16 Nov 2009 05:53:49 GMT

Peter has been in hospital for 4 days with febrile neutropaenia. Zero neuts or white cells and other counts dropping daily, and constant high temps. He has a terrible cough which makes him throw up and keeps him from sleeping.

We just found out this evening that he has RSV. I have never even heard of it.

Has anyone experienced this in their kids with cancer? Any info much appreciated as I have no idea.

Bridget

http://www.caringbridge.org/visit/peterpirie

p.s. he in in LTM for ALL

Swallowing problems and abdominal pain

communityreply@lls.org — Tue, 17 Nov 2009 18:13:45 GMT

Have your kids had swallowing problems and abdominal pain? My daughter is having abdominal pain every day. She has delt with this pain over three months now. The level of the pain is varying from light to severe pain. She also vomits approximately every third day. Besides she has problems to swallow food and everything must be smooth, however that does not prevent her for vomiting. She has not had any constipation. I have discussed this issue several times with our Onc but he thinks that this is just a side effect of chemos and there is no reason to worry. I am just starting to get really worried as this problems is getting worse day by day.

H1N1 and platelet counts

communityreply@lls.org — Fri, 13 Nov 2009 13:03:39 GMT

Hello all, its been a while since I posted on here. I am hoping someone can help me out. Brandon was DX 9-11-06 PreB ALL HR. We are so close to the end of treatment so of course everything and anything that can go wrong is. Brandon was DX with H1N1 on October 29. We did the Tamiflu and to be honest it worked great! He never got really sick and seemed to breeze through. The day he was DX his counts were low. I figured well, he has the flu, so of course they are going to be low.( WBC 1.2 HGB 13.0 and PLT 96 ANC of 600 ). His Dr told me that his counts should start to come up within a week. Ok, so fastforward to yesterday. Counts are still down WBC 1.4 HGB 10.8 PLT 34 ANC 600. I may be overreacting,as i tend to do with this BUT his PLTS are really low! I was always told that the number they look at when dealing with a relapse is the PLT count. So obviously I am really getting scared. His oncologist have stopped all chemo and we are going back in a week to recheck counts. If there is no improvement we are going to do a BMA to chec for relapse. My question is..have any of your children either had H1N1 or a virus that has caused counts, esp PLTS, to drop like this? I am so scared and just looking for a little bit of help,whether it is negative info or positive. You are all the experts in my opinion!!

Thank you Christine

Our Experience with H1N1

communityreply@lls.org — Tue, 17 Nov 2009 00:11:39 GMT

I know all of us are terrified of the swine flu (I now refer to it as pork chop fever for a little humor relief) and my nightmare came true this weeked. Alexis was admitted on Friday with a fever of 103. I already knew what she had since I was sick myself. I wasn't allowed in the hospital until they knew for sure she had the same thing and that was the longest night of my life. She had a terrible time with fever. It didn't break until last night. Her oxygen levels were of concern so she had to have oxygen until last night also. She was able to come today since her fever and oxygen levels were finally under control. We do have to have her counts checked again in two days because they have steadily declined and her hemoglobin and WBC are of concern right now.

I think it is hitting every child so differently. Our hospital has actually seen more more kids without cancer that are being hospitalized than the cancer kids. Of course, that is probably because we spend a lot of our time chasing our children with thermometers and tend to catch things faster

Epratuzumab for CD22+ Bcell ALL

communityreply@lls.org — Sat, 14 Nov 2009 18:23:29 GMT

Any parents out there that have experience with using this drug as part of their childs treatment protocol? Or are there any specific side effects or symptoms that you attribute to using this drug. Epratuzumab has been in testing with several different clinical trials over the past year, and we are considering it as part of a trial at M.D. Anderson to bring our son into his 4th remission.

Thanks for any info.

Mel

Who's getting flu shot and or H1N1 vax?

communityreply@lls.org — Thu, 01 Oct 2009 11:09:50 GMT

Just curious what your treatment centres are recommending for vaccines this year. We are usually told to get the seasonal flu shot - but with all the contraversy this year, we may not get it til January. In Canada anyway, there is new evidence emerging that those who get the seasonal flu shot are at an increased risk of getting H1N1. They are recommending that those that people get H1N1 vax first then after that's all done near the end of the year, then they'll start rolling out the seasonal vaxes.

My question is - has any of your children got vaccinated this year and if so, for what? Also have any of your children had the actual H1N1 flu and is it all that bad?

Your thoughts would be appreciated! thanks...

rash mystery solved- maybe it will solve your rash too

communityreply@lls.org — Fri, 13 Nov 2009 00:09:35 GMT

FYI- For 2 years now we were told that the rash around Eli's mouth and nose was a methotrexate rash and there wasn't a whole lot we could do about it. "A little hydrocortizone wont hurt" we were told by the onoclogists. We went to a dermotologist today who told us it was due to steroid withdrawls every month! He prescribed a non-steroidal ointment. We are hoping this will help. I know Eli can't be the only one who has been tolerating this rash, so if your kiddo is too, there may be an answer.

Who we all are

djlawman@yahoo.com — Fri, 03 Apr 2009 20:34:09 GMT

Since we are on a new board now, I thought it might be an appropriate time to start this on a new thread to get to know each other.

I am the father of Sam, who was dx in Jan. of 2004 with pre-B ALL, just a month after his 15th birthday, during his freshman year , no CNS involvement. Early responder. We had 5 hospitalizations in 2004, but none after that.

After almost 3 1/2 years of treatment, Sam went OT on May 1, 2007. He has now been in remission for 5+ years, and OT for almost 2 years. Sam is a sophomore in college, played on the JV soccer team this past fall, and is on the cycling club team this spring. He's doing fantastically well. We are off to a long-delayed Make-A-Wish trip to the Galapagos Islands in May. (A redo of our trip last June, which got aborted due to the airline's incompetence, as some may recall.)

We got treated, and get followed at Children's Hospital of Philadelphia, the nation's oldest and best pediatric hospital, and best pediatric oncology hospital (according to many surveys).

I guess now I am one of the old hands here on the LLS board, having been around for about the last 5 years. I still hang around, hoping to be able to help some of you others having to go through this painful ordeal with your kids.

Hope all are doing well.

Dex vs. Pred

communityreply@lls.org — Fri, 13 Nov 2009 23:05:44 GMT

Hi everyone,

While I forgot to ask our onc about this issue yesterday, I did just happen upon this on pg. 90 of Justin's protocol (AALL0232--high risk Pre-B ALL):

Amended Design (05/23/08) for Steroid Randomization

Due to excessive incidence of osteonecrosis, patients 10+ years old will not be randomized to the dexamethasone arms. They will be randomized to either the PC or PH arms at the time of enrollment. Comparison of the steroid regimens will be restricted to the 1-9 year olds. Due to the higher incidence of adverse events seen with the use of dexamethasone, only a signficant EFS advantage will result in it being studied further in this population.

There's more technical jargon about percentages and EFS...but that's the gist.

I hate swine flu / DI

communityreply@lls.org — Tue, 10 Nov 2009 22:32:22 GMT

My daughter will start DI after two weeks. She has had four infections within three months so she is very sensitive for any germs. Now I am so worried because she will start DI and swine flu is spreading around our city. Our nurse ( not so supportive) told me that is very unlikely that she will not catch it. She got the vaccination last Friday, however her ANC was then 200 and because of the chemo it is likely that her body cannot create antibodies. I am scared of death now and I just do not understand how can I copy right now. I know that DI is very intense and hard period and having swine at the same time is very risky. How much there is hope left if this worst scenario happens? I am so sorry to be so negative but I am just so scared and miserable. I have only heard success stories of leukemia patients having swine flu during maintenance.

How are platelets after a Lumbar puncture?

communityreply@lls.org — Sun, 23 Aug 2009 23:40:51 GMT

Hello,

My son, Peter, is just on a bit of a chemo hold as his platelets are a little low. He is on cycle 8 of LTM for ALL.

I was just looking back over his blood counts since he started LTM, and discovered that his platelets always go low the week, or 2 weeks, after the LP. Other than those weeks, his platelets are always at a very healthy level. But with each progressive cycle, I can see that they dip lower and lower each time.

e.g. after cycle 6 LP they dropped to 79, after cycle 7 LP they dropped to 56, and after cycle 8 LP they dropped to 49.

They always recover by the next montly clinic visit, but I am just wondering how low they will be after the next few LP's . And I am especially wondering if anyone else has noticed this pattern.

Thanks for any info.

Bridget

8 Months into LTM, each month getting worse...

trisharchey@bellsouth.net — Mon, 26 Oct 2009 18:30:39 GMT

Looking to see if anyone else is experiencing what we are - Kelly is 4 and a half, 8 months into LTM on protocol AALL0331 and the last 2 rounds of chemo have really hit her hard - not sleeping all night, feeling terrible, legs ache, head hurts, tummy hurts and zofran not helping but no fever. She had chemo last Wed., and was still up all night last night. Oncs think maybe since they upped her dose slightly due to weight last month, or maybe toxins are building up - but she is acting like she did during induction, wants to sleep on top of me all day, and I have had to keep her home from school. ANyone have any thoughts?

Travel Medical Insurance

communityreply@lls.org — Thu, 12 Nov 2009 05:37:03 GMT

We are wanting to purchase travel medical insurance for the US but we're having a tough time finding a supplier for yearly personal travel insurance. We live on the border in Canada so we do cross border shopping quite regularly. The companies we've looked into thus far won't insure a person with a condition such as cancer, regardless of age. Has anyone found an insurance company that provides good medical coverage?

Information Only

communityreply@lls.org — Fri, 13 Nov 2009 12:59:48 GMT

I thought I would put this out there for information only, the percentage rates are quite comprehensive, the best I've read to date. The info relating to the swine flu here in Australia is correct.

http://articles.mercola.com/sites/articles/archive/2009/10/31/CDC-Says-Kids-That-Die-From-Swine-Flu-Have-Coexisting-Bacterial-Infections.aspx

http://articles.mercola.com/sites/articles/archive/2009/11/03/What-We-Have-Learned-About-the-Great-Swine-Flu-Pandemic.aspx

Jenn

help with a sibling

communityreply@lls.org — Tue, 10 Nov 2009 21:50:40 GMT

hi everyone -

a couple of months ago, my 4 year old daughter ashley got diagnosed with ALL. it's been hard on all of us. but the kid i'm really worried about right now is her brother dean.

about a month ago, he got the swine flu - which meant that we all walked around the house in masks, wore gloves, and lots of other stuff he wasn't used to seeing. so he's deathly afraid of getting sick again.two weeks ago, he came home from school because his teacher said he was inconsolably crying. turns out, some of the kids in his class were coughing/not covering their mouths - and he was afraid of getting sick and in turn getting his sister sick. we thought we got past this, but in the last week we've seen some more warning signs that all is not right with him.

some examples:

- he was constantly asking if we could go home on one of our "daddy days," i.e. i try to spend a full day with him every other week or so just him and me, and not only was it was hard getting him out the door this time and even harder to keep him having fun while we were out.

- he started crying and refused to go to school on monday

- he came home from school today (tuesday) because he was crying again at school

- he has been afraid to be by himself while at home - he won't even go downstairs by himself in the morning (although he didn't do this much before, but now it seems like it's a more intense need for him)

- he's complaining of stomach pain, which seems to only be induced when he needs to be separated from his mom and sister

re: the school thing - we asked him what was wrong. he usually plays it pretty close to the vest, and doesn't tell us much until we pry it out of him. but he said he was sad and worried that his sister wouldn't eat. we told him that this is a normal stage of the chemo cycle, and he shouldn't be worried. but he just seems to want to be home with mommy and ashley whenever he can be. so much so that it makes him upset when he's not and he's wanting to come home from school when he's there.

we're not sure what to do from here to get him back on track... we've thought about family counseling, him having meetings with the school social worker, or reserving special times just for him, me and mommy once a week, and/or giving him special mommy time once a day when i get home. i'm sure he's confused, sad, jealous of the attention, worried about his sister - the emotional works.

any advice?? thanks from our family for any help you can provide.

Maintenance is easier my a**.....

communityreply@lls.org — Tue, 10 Nov 2009 22:30:31 GMT

You go through this intense treatment with the idea that once you make it to maintenance everything will settle down. Well, not so much!!! Since Jakob started maintenance mid-Sept, he has had nothing but hiccups. First he was severly anemic and needed a transfusion, then this does he or doesn't he have AVN, counts bouncing around like crazy and today they think he either has H1N1 or pneumonia!!!! As an adult I can understand that this cancer thing isn't a black and white road but he is 12 and going nuts. People keep telling him how easy/better maintenance is and he has had it. I think today I'm done too.

Sorry I know you guys are the only ones that can truly understand. Thanks for listening.

Nana

How do you stay sympathetic to others?

communityreply@lls.org — Tue, 29 Sep 2009 23:59:16 GMT

Okay, I don't know if this is going to make me sound terrible but I just have to ask! Have you been able to stay sympathetic to others at all times? For the most part my heart does go out to others in their time of need. Say a friend who has a child with chronic ear infections or a cousin with an eating disorder. But at other times I think "Geez, count your blessings. It could be so much worse". And I actually feel that way against myself sometimes. I think "Austin is doing so well, we are so lucky compared to some others. I shouldn't complain". I really struggle with not saying something to those people at times. Especially when they vent to me. I want to be a good friend and listener at all times, it is just harder some days when I am feeling down. Yesturday I received an email from my cousin who has an eating disorder and she said her life is completely unbearable and it will never end. I honestly almost sent a message back telling her while unbearable is relative to each, I simply couldn't continue to receive her messages anymore. I know sympathy is probably the right response but it is hard sometimes. Or when I was venting to a friend she told me she knows how I feel, her son had ear infections when he was a baby and how scary it was. My heart goes out to any mom or dad who has an ill child but really, ear infections! Am I the only one? How do you stay sympathetic? Do you just forgive yourself for the times you can't be and move on?

Neuropsychologist and home school

spookyproud@aol.com — Fri, 23 Oct 2009 18:29:27 GMT

Has anyone had their child evaluated by a neuropsychologist?

How did you go about that? Through your oncologist, your pediatrician, or school?

ALSO: How many hours does your school district provide for a home school teacher? What age is your child (in case it is dependent upon age) Kaeden is five.

ALSO: Do they provide homeschooling EVEN though your child is currently attending school? If your child is ill does it take another IEP and finding a teacher to start home schooling OR has that already been set up to work concurrently?

Thank you!!! and yes, we are having problems....

Cheryl

Booster for seasonal flu shot ?

communityreply@lls.org — Tue, 03 Nov 2009 02:29:19 GMT

Hello everyone. Flu shots are a hot topic...and I have yet another question for you guys...

My daughter, HR ALL, DX 09/2006 (age 4), OT 12/28/08 (now age 7), had a clinic appt. on this past Friday. At this appointment she received her H1N1 shot and I was informed (although I already knew) that she would need to get a "booster" shot in 30 days (at her next appt.). What surprised me, was that her team also suggested that she get an additional seasonal flu shot, what they called a "booster". She received her original seasonal flu shot on Oct. 5 via her pediatrician. On Friday, it was only a suggestion, and it was told to me that ID (infectious disease) was reviewing the recommendation for all kids less than one year off treatment. Today, I got an email from her oncologist stating that ID has decided to push for the booster in all kids less than the 1 yr. mark.

Has anyone's elses hospital/oncologist recommended that your cancer child receive 2 seasonal flu shots? (in addition to the 2 H1N1 shots).

In the years she was on treatment this wasn't required. I plan to call tomorrow to find out why this is now the recommendation. My daughter has done fine with both the seasonal shot and the H1N1, but lets face it...she doesn't want to get anymore shots than she has to. I'm considering not doing the seasonal booster, unless they can give me a hell of a good reason to do it.

Thoughts?

~Amy

www.caringbridge.org/visit/marisarosa

So angry with myself....

communityreply@lls.org — Sat, 26 Sep 2009 13:03:10 GMT

Just needed to post a message today. I'm driving myself crazy. Micah and Seth were in for check-ups 3 weeks ago and counts were great, no worries. I had about a week of feeling good. And then the worry began. Micah got a bruise on his chest...about the size of a quarter. Panic on my part. Even though, I KNEW his counts were good, it was like I could not help myself. Totally ruined a Sunday and the next few days worrying. Micah had to go in for a CBC 2 weeks later because his ANC had only been 756 when we were at clinic. His counts were awesome. Then all the kids went to the lake with my parents and Seth was riding a trike and flipped over...bruise up a bit. Just one bruise on the back of his calf where the pedal smacked him, a scrape on his back and about three bruises on his shin. Once again, panic on my part. An entire weekend of stress and worry. Those bruises are fading, but he has a couple new ones today.I was having a good morning until I saw him getting dressed and saw the new bruises. They are not big--dime size. on his shins. I feel like my day already went in the crapper.

Calgon, take me away! Is anyone else this nuts? It's like my left brain and right brain are fighting...one part of me keeps saying, have faith, he's fine, he's got good energy, no swollen glands, no temp, feels good..... and the other half of my brain is sick with worry about the what-ifs. And of course, the negative side is always much louder than the other!

Chime in today if you have time...how many bruises are normal for a six year old boy?

Where are we all from?

communityreply@lls.org — Tue, 20 Oct 2009 02:55:17 GMT

Maybe this is a strange question. Maybe not. I am just wondering where everyone who regularly (or even not so regularly) posts to this forum, is from. Not necessarily your hometown, but where do you go for your kid's treatment? We are from MN and go to Sioux Falls to the Sanford Children's Hospital for treatment. I noticed some are from other countries...Canada perhaps? Anyway, just wondering...

Long delays and BMB Worries

communityreply@lls.org — Mon, 10 Aug 2009 01:00:37 GMT

We are in the midst of yet another long delay (5 weeks and counting) with our son, Dylan (7 year old, high-risk SER pre-B ALL, diagnosed on 12-1-08). If he doesn't make counts tomorrow, they want to do a BMB to check for relapse. We are currently waiting to start the second half of Delayed Intensification #1. When we were waiting to start DI, we also had a very long delay (6 weeks). Dylan has also had some pain and headaches the last few weeks so the Onc. seemed a lot more concerned about this delay than they were about the last one. I know that we are not the only ones here who have faced this, so I was just hoping to learn from your experiences (good or bad). Its been a long weekend of anxious waiting and as per my usual, here it is the night before and I'm just getting more and more nervous. Thanks in advance.

http://www.caringbridge.org/visit/dylankinsey

Anyone worry about your non-cancer kids?

communityreply@lls.org — Thu, 12 Nov 2009 02:30:18 GMT

Now that I type that it sounds like such a dumb question. Of course we all worry about our non-cancer kids. Maybe not in the same way, but I am sure we all do. I've had a rough week and just need to type it out I guess. Last week, our 3 year old got the flu. Two day later he felt fine. Then the youngest got it--he's almost 2. His fever went a full 2 days. Then he seemed better on Sunday. Then on Monday afternoon he started acting tired and out of sorts again. I took him in, but the doc said, if he had H1N1 (which they did not even test him for), he would probably still feel crummy for days. No sounds in his chest, no ear infection, throat looked good. Tuesday morning, the temp was back, only not as high. Just 100 or so. Last night he seemed on the upswing again. Slept good. But this morning he was cranky and whiney again. Low grade temp. So I brought him to the other clinic (the one our reg. doc is at) and she checked him and I out. I also came down with sore throat, cough, aches, but no fever. She looked in his ears and found one that was infected. Since I was not running a temp, she said I probably had a different viral bug and to treat with fluids, decongestants if necessary. A NORMAL person would have been happy with that diagnosis I think. But not I said the momcologist.

See, 2 years ago when Seth was diagnosed, he had a temp for 5 days (no other respitory symptoms though) and then the first doc said ear infection and sent us on our way. Three days later we found out he had leukemia. So that is where my brain was today. Since this is our regular doc, she knows my concerns and our history and she knows right where my brain was going. So she suggested quick CBC finger poke for our little guy. Just to help us all have a better rest of the day. Of course, he would not cooperate with that and fought the nurse and I tooth and nail and we could not get any blood in the vile. He bled for about 15 seconds, most of which ended up all over she and I and then his blod clotted and he wouldn't bleed anymore. Guess that's a good sign. So we opted not to do the CBC because I could not see trying to do an IV blood draw on a 2 year old to calm my fears. Seemed a little over the top.

Anyway, we come home with antibiotics for an ear infection and I was just in the lowest of moods. He and I took a nap snuggled together in our favorite chair and all I could think about was how I might have another kids with cancer. Like 2 isn't 2 too many already.

But after a nap and crackers and milk and a tsp of tylenol and antibiotic.....my little wee one is feeling good. Running all over the house and playing with his brothers. I just hope he feels this good in the morning.

Thanks for listening...

AVN question...

communityreply@lls.org — Thu, 29 Oct 2009 12:27:40 GMT

Has anyone had AVN present with denser bone rather than a loss of density? We had our clinic appt. yesterday and our Onc says his bone looks like it has a dense bone mass not a loss of density. Now we are waiting for other results from osteo exam,MRI and another bone scan thing( sorry big long name and I only heard it in french so I don't know). The drs cannot agree if it is AVN and whether to stop steroids. He didn't get them this cycle but is due in 2 wks so I need some answers pretty quick. Our main Onc is not decided about steroids because Jakob is Very High Risk and just started maintenance, the secondary Onc and Ortho want steroids to stop forever...... Any advice would be great!!

Thanks,

Nana

another AVN question - Are there things to help?

communityreply@lls.org — Thu, 05 Nov 2009 00:10:58 GMT

Ok, I know AVN has been discussed on here a bunch. Lily today was diagnosed with AVN definitely in the Left foot and spots of bone edema they felt were probable AVN or potentially would turn to AVN in "lots" of spots in both feet and ankles. (they are still reviewing it with radiologists and orthos). Anyway, our doctors are now doing the dance everyone has described of do we or do we not stop the DEX. Lily is at the beginning of LTM and we have missed a ton of chemo to low counts. Anyway, the oncs and I aren't overly enthused about stopping chemo however she is symptomatic - she has swelling and has had her ankles x-rayed who knows how many time thinking she had a fracture for hobbling around. She also has pain in her shoulders, back, hips, knees and wrists (we haven't had those MRI'd but they suspect AVN is there too. So due to the symptoms we aren't overly enthused about continuing it either.

So my question is does anyone know anything you can do that won't mess with the steroids that will help promote bone healing. The oncologists said presently they were leaning towards continuing steroids for 2 months and then reevaluating. I sort of lean towards that however I was curious if there was anythign I could do - vitamins, therapy, ??????? to promote bone healing. I thought it may help at least keep things from getting worse so we don't have to stop steroids. I thought of milk but that messes with the stupid chemo.

prognosis question...

communityreply@lls.org — Mon, 10 Aug 2009 12:14:18 GMT

Ok, so this might seem like an odd post but my doctor's don't give me a definate answer so I thought maybe I could get your opinions. When my son had his test, I forget the exact term, but they see if their are any "markers" saying one way or the other if there are any signs of a good or poor prognosis, the doctor's said there were none to say either way. Is that something any of you ran into? He is in the intermediate risk group for t-cell All. He is 14. His wbc at diagnosis was 3.8 and hmg was 13.9 and platelets were156,000. He achieved remission at the alloted time and did real well with all phases. Only 9 days in the hospital total during all phases. DI was better than anticipated and he started maintenance on schedule.

So does this seem like he has a good prognosis? I know no one can predict the future, but maybe someone on here has a similar experience and could shed some light. When I ask my doctor he really doesn't say anything other than he's doing real well. I guess that should be enough but how could there not be any markers to tell us either way if he has a favorable or unfavorable prognosis?

I need a help - PreK!

communityreply@lls.org — Sat, 07 Nov 2009 04:56:11 GMT

My son 3 yo and 10 months started a PreK this year just 3 day a week, 3 hours a day. Because he will go to public PreK next year (he was born January 2006) i would like to stop his education for now because he has a cold and cough since september. It's too much for me. My husband said to me that I will do really wrong think because he have to go to learn play with another kids, learn different thing. I think that my husband is wrong hahah. Philip is very smart boy, he knows all shapes, colors, letters, he can even spell some word, he can count. So, for me he can stay this year with me at home. But maybe I wrong and my husband is right? Please tell me what I have to do? Your answer will be very helpfull for me.

Thanks a lot

Marta

Frequent urination from Vincristine?

communityreply@lls.org — Sat, 10 Oct 2009 03:17:43 GMT

Has anyone had their child experience frequent urination from Vincristine? Tanner, (pre-b ALL, dx 6/09) who used to be a total camel, now can't go 15 minutes without going to the bathroom. She has been tested twice for UTI and was negative, and also tested negative for calcium deposits in her ureter. Her docs then assumed she was experiencing neurapathy to the bladder and prescribed Oxybutinin to stop bladder spasms, but that didn't work either. They're stumped and still trying to figure it out. I know it doesn't seem like a really big deal, but it is actually pretty debilitating to her. She wakes frequently at night to go to the bathroom and can't get through a school session with her homebound teacher without going every 10 minutes. I don't know what in the world she would do once she is able to go back to school.

Anyone else experienced this?

Tanner's Mom

Devistated!!!

communityreply@lls.org — Sat, 25 Apr 2009 16:14:56 GMT

Many of you know that Alex had sort of a 'crash landing' into his end of treatment. But, never the less, he finished. Yesterday he got his port-a-cath out. A day that should be wonderful right? No!

They accessed his port and drew labs, then pretty much immediately sedated him and took him down to interventional radiology to remove the port. That went smoothly.

Then we went back to oncology for him to recover from the sedation, and have his doctor visit. After whe was awake and feling good his onc came in to check him out. Things were going great! IV was out, he was dressed, last thing we needed to do was just take a quick look at the labs. We always just look at them in the room with the doc on the computer. They were looking good until we saw "two blasts". The doc was like oh, I'm so sorry I didn't see that when I reviewed the labs in my office. I wouldn't just let you see that pop up on the computer like that. He said he didn't think they had reported that at the time he had looked at the labs before. He said well, it's probably just a couple of reactive cells, and he would go down to the lab abd take a look at the slide. I told him him I wasn't worried. I'm a lab tech, and I know how some people can jump the gun. He said he will call us after he takes a look at it. Well we were probably about 2 miles down the road when he called. He said that there are definately blasts in the blood, no doubt about it. They are not just reactive cells. Him and one of the pathologists looked at the slide. It is confirmed. However there are only a couple of them. So it is hard to say if it a relapse yet. Especially since he also had rotavirus (a stomache virus) last week, and influenza B at the end of March. So, as most of you know your bone marrow can sometimes spit out a couple of premature cells when it's recovering from illness. His doctor said he really can't say it this point one way or another if it is from the viruses he had last month, or if it relapse. Because they are for sure blast cells. So, he thought the best thing to do was to wait two weeks and come back in for another CBC and doctor visit. Because if it is relapse we should know for sure with in two weeks. So, there will either be more blasts in his blood, or if it was from his bone marrow recovering then there should be none. He said how sorry he was, especially on a day that was supossed to be filled with such joy and happiness. He did say that his gut was telling him that it's not relapse. But three years ago when we were trying to figure out what Alex's anemia problem was this same doc also told me that his gut feeling was that it was not cancer. So, I don't trust his gut too much. He even said to me on the phone, that he feels like he is having the same conversation he did with me three years ago. So, basically based on our medical knowledge.....neither of us know for sure, and all we can do is wait and see what his body will do......and pray of course. His doctor said that his advice to us is to just enjoy the next two weeks off chemo. I understand what he means, but hearing the doctor say that didn't exactly make me feel better.

Alex has only been off chemo since March 22nd! One month. Thats it!!!! And he was susposed to be low risk!!! I guess all those statistics don't mean s***! Because if it's in the cards it's just gonna happen anyway. All I know is that his doctor didn't sound too optimistic on the phone yesterday. He sounded very sad, and appologetic.

I was very sad, and upset for a couple of hours yesterday, but then by the end of the day I was just numb. I think I was emotionally exausted. Not today, I feeling sort of pissed off! All I know is this is going to be a rough couple of weeks. His doctor did say that if we are concerned about anything over the next couple of weeks to definately call sooner than May 8th (our appt).

I'm sorry I was so long winded with this. I figured if I gave the whole story it would save some questions in the long run.

Please pray for Alex!!!!

Thank you,

Sarah

www.caringbridge.org/visit/alexdebenedetto

How was your child diagnosed?

communityreply@lls.org — Sat, 23 May 2009 04:31:07 GMT

Just curious....how was your child diagnosed? What symptoms did he/she present with? In hindsight do you see anything else that you now know to be a sign but didn't think was alarming at the time?

Emma was diagnosed extremely quickly. I just remember playing video games with her in the living room after work and noticing purple bruising in a very odd pattern on her arm. I stopped and asked her to come take a bath with me so I could take a closer look. I ended up calling her dad from the tub to tell him I thought she needed to go to the pediatrician the next day. Then I took pics and emailed them to my sister. By the morning, she'd googled and found the word 'petichiae' and we spent the morning (me at work, her at home) on the phone worrying ourselves silly and finally deciding it had to be blood poisoning from a cat scratch Emma'd received.

We took Emma to the doctor at lunchtime and the nurse did a CBC. When the doc finally came in, she just said she'd talk to us in a minute, didn't want to alarm us, but that she had St Jude on the phone and they needed our cell number. So we got to sit in there with Emma for about 10 more minutes trying not to cry. When she did come in, she showed us a bunch of numbers on the computer but all I remember was her platelets were only 14. I will forever be grateful that she did the CBC and recognized what we were dealing with.

We had a diagnosis within a couple of hours of being at St. Jude...It was about 6:30pm. She was admitted, got blood/platelets/chemo that night. Whew.

In hindsight, I saw signs a full month prior. Emma had been to the beach with her dad and came home with 'freckles' that moved around. They were never where I thought they were when I looked again! Then she got kinda pale, but I thought her tan was fading. She was cranky and more tired than normal, but I attributed it to the recent change in households when her dad and I split up three months before. She had a four-day fever with no cold symptoms 10 days earlier, but she'd had that one time and the doc said sometimes a virus just manifests as a fever. All of this now is crystal clear, but at the time there was nothing that would have clued me in before the bruising started. I can almost pinpoint the date that her body first showed signs of cancer, even when I look at pictures of her I can say 'she was sick on this day, but not on this day.'

I asked the doc who diagnosed her how long she'd had this and he said about three weeks, maybe longer. It just blows my mind that my kid had cancer and I had no clue whatsoever. So much for mother's intuition!

H1N1 vaccine and low ANC

communityreply@lls.org — Wed, 11 Nov 2009 18:10:08 GMT

So we all got our vaccine and that night we got Aj's bloodwork. He has an ANC 370 and a WBC of 0.9. my question is will the vaccine work? I read on another post that with an ANC that low can the kids build any antibodies? Was this vaccine null and void? Any insights?

Sometimes I feel like a nut!

spookyproud@aol.com — Fri, 06 Nov 2009 15:36:31 GMT

Sometimes I dont~ Just had to finish it.

Anyway during that first 9 months I thought I was getting everything (info),understanding it and writing it down. I am the only one that participates on any blog of Kaedens and 100% participation at his clinic visits/hospital stays. Of course I tried to write down everything on caringbridge.

During that "FOG" of induction I thought I was walking away with a "memory" of everything that happened. I dont know how many times I have written that Kaeden had over 5% blast on day 29 BMB.

To my horror this last weekend I found out what that meant. (I always noticed the silence on the boards too-lol) I also noticed that Kaeden didnt do the extra two weeks of induction. I was pretty hysterical and had to call Serena (teamDonavynns mom) and have her calm me down. Incredibly she was able to reason with me and tell me to wait until I spoke with the doctors on Thursday (yesterday)

To my amazement, relief, etc~ I WAS WRONG! Somehow, someway I had gotten it in my mind that his 5% blast were on day 29 when it actually happened on day 8. On day 29 the F.C show no blast in his BM. The doctor went over every lab result to prove it to me.

What have I learned? I am not supermom, superhuman and I dont have a memory like I used to (I have not admitted this to anyone other than the parents here and I will refrain from admitting it to my family). I also learned that I shouldnt panic before I meet with the oncologist and go over the past results. (like thats going to happen-not panic)

I also try so hard to keep positive thoughts (my cup is half full) but I cannot help myself waiting for the other "shoe to drop"

So I hope my sharing this story helps other parents in some way~

Cheryl

bryce is gone :(

communityreply@lls.org — Mon, 01 Jun 2009 05:01:15 GMT

Just wanted to let everyone know that Bryce passed away tonight at 9:54pm from leukemia

My 3 1/2 year old son goes crazy on Dexamethazone. Any ideas how to help him?

communityreply@lls.org — Sun, 09 Aug 2009 00:09:12 GMT

My 3 1/2 old son Ben has ALL, standard risk. We are 5 month into treatment (He is in remission after induction). Protocol DFCI, now in Consolidation II. He gets Dexamethazone 5 days every 3 weeks and Methatrexate, Vincristine or PEG Asperagenase according to protocol. From the 1st day on Dex untill about 9 days after it is a nightmare at home. Sometimes Ben cries for 3 hours without specific reason, or repeats something endlessly (I am hungry, bell hearts, I want mommy) for more than 40 minutes. He can scream: Mommy hug me or pick me up but when she gets closer he runs and pushes her away... Looks like his understanding of really is gone and you can not talk him or help him during the episode. At night he sometimes he wakes up and cries for 2 hours...I have tried giving him Oxicodone which helps for about 1 hour but this is a morphine like drug and I am afraid to abuse it. Not sure what to do about this. Once we stop with Dexamathazone, the episodes slowly fade away and he returns to being normal kid.

Few questions to the community here:

1. Have you seen this sort of reaction to Dexamathazone?

2. Any ideas on what can be done during the episodes to ease or shorten them etc...?

Thank you all.

Mic

3 yrs OT with the h1n1 virus....

communityreply@lls.org — Wed, 28 Oct 2009 14:29:38 GMT

My son was dx at 21 months, he is 7 now, 3 years ot. I was struggling with do I give my kids the h1n1 vac or not. Well my girls got it 2 weeks ago (the h1n1 flu, not the vac.) it lasted 7 days, they were pretty miserable but not too bad. My son however got it Friday the 23. Prior to Friday he was feeling fine, a slight cough that sounded like he was clearing his throat, no big deal. Friday at 2am he woke up with a horrendous cough fever 103.2, stuffy runny nose, body aches, headache. I took him in right away 8:30 Friday morning hoping they would give him Tamiflu, but because he is not pregnant, an infant or no longer immune compromised they would not give him the tamiflu.My son reacts horrible to respitory illness, gets "cold/illness induced asthma". When the Dr listened to his lungs she said there was crackling in his lower right lung dx him with h1n1 (guessing they won't test unless you meet certain qualification) and bronchitis, so she perscribed amoxicilin for 10 days. He fought with high fevers Friday and Sat, Sunday he went all day without a temp and his cough was much better. Midnight Sunday night he woke up with a much worse cough, high fever, runny nose...everything all over again. I took him back in fearing the bronchitis was now in both lungs, luckly the Dr sid his lungs sounded clear, I was surprised because he sounded awful. Again he said it the flu, that, that is what this flu does, makes you think you are better then hits again harder, so finish the amoxicilin and come back Friday is he is still having fever and or cough. He is still running high temps, just took it now 102.9, tylenol does nothing, motrin keeps it under control for the most part but the fever come back before his next does is due. He was coughing so much last night I had to get him up at 1am to give him a nebulizer treatment, which works ok for an hour or so.

I just wanted to let you guys know how bad this flu is, I was really leaning on not giving my kids the vac because of the possible side effects you keep hearing, now obviously we no longer need the vac, but if I had known this is how he would react and it was acually available I would without question give the vac..I'm not saying all of you should run out and give it to your kids, its really is a personal choice. I just really wanted you know how bad its hitting my son.

I was googling stuff on the internet, I know I really should just stay away from it sometimes, I found this atricle, which is something I've always worried about, here is the link:

http://www.foxnews.com/story/0,2933,187869,00.html#

At the hospital for chemo today

communityreply@lls.org — Mon, 02 Nov 2009 16:26:51 GMT

Well we just go checked in to Dat treament for Matthews second round of chemo. I hope things go good and he doesnt get too sick. They have a lot for him to do here and I brought my laptop so we should be set. Im not sure how long we are here for but most of the day I think. We will be back here for the next 5 days. Please keep him in your thoughts and prayers. I hate this part. Thank you.

Really High ANC during LTM should I be worried?

communityreply@lls.org — Wed, 22 Apr 2009 19:19:29 GMT

Wyatt went in for labs yesterday and his ANC came back at almost 4000!!! Normally this would thrill us, but he is already on 115% chemo and it seems to not effect him at all!! We go to clinic today and they already told us that they would be raising his meds and hope that will bring the ANC down to the level they want (between 750 - 1500) It just scares me that it was so high, all the other levels looked great too, if I didn't know better you would never know he had leukemia looking at his counts yesterday. I just worry about relapse if the counts stay this high, makes me feel like the meds are not working!!! Just for reference, his counts have been high for months, each month they keep raising his meds and each month the counts keep going up!! (last month 2800, month before 2200) also he has not been sick, not getting sick, not anything but looking like a healthy boy again!!

Has anyone else had this happen? (now that I have written this I am sure his counts will crash in the next two weeks and we will end up in the hospital!!!)

Thanks everyone!!

bryce is terminal

communityreply@lls.org — Thu, 21 May 2009 19:47:56 GMT

we got news today bryce's cancer has taken over his bone marrow and they are calling in hospice just wanted to thank everyone for their thoughts and prayers!

Dapsone and Methemoglobinemia

communityreply@lls.org — Thu, 05 Nov 2009 01:34:26 GMT

This is somewhat of a PSA for anyone else whose child gets put on Dapsone. This is something that I didn't even know about until today.

Dylan (7, dx 12-1-08) was started on Dapsone last week since the Septra suppresses his counts causing really long delays in starting chemo and the attempt to give him Pentamidine was a total disaster. He started last Monday and then by last Friday I would've sworn he needed a blood transfusion because he was pale, weak, headache and even had a dizzy spell at physical therapy. So we went upstairs to clinic to check counts. Everything looked pretty good. Counts were down some but well above transfusion levels. Went home thinking what a paranoid nut I have become for thinking he needed a transfusion when everything was actually fine. Then today, he woke up at 9 this morning to throw up and went right back to sleep, didn't wake back up until 1:30 this afternoon. He was complaining of headache, nausea, stomach and back pain. I'm rationalizing all these symptoms since he got another dose of the IV methotrexate and vincristine on Monday (Augmented Interim Maintenance II) and these drugs made him feel pretty bad the last time he had them. Also, I was seriously doubting my mommy radar since I was so wrong last Friday. So anyway, he is trying to do his stretches and he can only do about 30 seconds of activity and then has to stop for a rest. Now I know for sure there is something weird going on with him. We stop the physical therapy and head back upstairs to clinic again. I have to carry him because he doesn't have the energy to walk. By the time I explain what is going on, he is looking pretty sick. His vitals showed him to be running a low grade fever, tachycardic and his SpO2 was low. His lips and under his eyes were kind of a greenish-purple color and three of his docs come rushing in to check him out. Yep, as it turns out, my mommy radar was working just fine all along. Now I wish I would have been a little pushier about them checking him out more thoroughly last week.

Turns out that the Dapsone can cause methemoglobinemia. A "rare" disorder of the red blood cells where these methoglobins that can't bind or carry oxygen become elevated (normal is less than 1%). Signs and symptoms typically include shortness of breath, cyanosis, mental status changes (noticed this yesterday trying to do schoolwork with him but didn't think too much of it at the time), headache, fatigue, exercise intolerance, dizziness, loss of consciousness, dysrhythmias, seizures, coma and death (at levels over 70% in healthy people but people with underlying conditions can get the more severe symptoms at levels of just 7 to 8%!!!). Dylan's nurse said she's only seen it a few times before. Luckily we caught Dylan's before it became too critical and he was just treated with oxygen and flushed with a large bolus of fluids to help clear the dapsone from his system. Symptoms should start to improve sometime tommorrow hopefully. He is just under observation for now. Obviously, now he will no longer be able to take the Dapsone either. It looks like after all this effort to get him on something that won't suppress counts, he is going to have to go right back on the Septra again. Ughh... Oh how I hate thee, leukemia!

www.caringbridge.org/visit/dylankinsey

When do you give Methotrexate pills.....

communityreply@lls.org — Tue, 11 Aug 2009 13:15:23 GMT

we are in LTM. Aj is taking his first dose of oral methx. He also takes 6-mp. I thought I heard somewhere not to mix these two together. Do any of you give the pills in the am and 6mp in pm? On the pill bottle for methx. it says evening. Your thoughts?

Interesting research for T-ALL

communityreply@lls.org — Thu, 12 Nov 2009 10:50:15 GMT

They've found a new way to attack cancers involving the NOTCH signalling pathway, common with T-cell ALL.

http://news.bbc.co.uk/2/hi/health/8353229.stm

Negative Results on MRI

communityreply@lls.org — Fri, 06 Nov 2009 19:44:06 GMT

I wanted to let you all know that Josie's MRI showed no signs of necrosis. Thank goodness! Now they will wait and see what the pain in her legs does. They are considering cranking down her Vincristine. Thank you all for your answers!

Petechiae

communityreply@lls.org — Thu, 30 Jul 2009 21:06:28 GMT

My son Scott (3 and a half months off treatment) has a little spot (about 2inch) of petechiae on his thigh. It just appeared, through no apparent trauma this afternoon.

I am trying not to panic. I called clinic and they just advised that I "keep an eye on him", yeah right, like Im not ALWAYS watching him like a hawk.

Im clinging to the hope that this could have happened because he has been taking ibuprofen for the last couple of weeks (800mg daily) for his ankle pain caused by the vincristine. His last visit 2 weeks ago showed good counts and that is when the doc switched him from tylenol to ibuprofen.

He has no other classic signs. No headache, aches, sickness, fever. He says he feels fine.

Your thoughts would be much appreciated. Thank you.

Suspicious CNS?!!

communityreply@lls.org — Fri, 03 Jul 2009 18:00:08 GMT

I received a phone call from the hospital yesterday (you know, the kind we all dread) that Matthew's LP showed four WBC and some cells that they could not make out, therefore inconclusive/suspicious. Since he had ITMX that day, they will not be able to another LP until next Friday. My question is: has anyone had this sort of experience with the LP's and is it at all possible that it is nothing? or a CNS relapse? He was CNS negative at diagnosis two years ago,(t-cell AL) and has been on LTM since Nov 07, with 10 more months to go....no real glitches, side effects, issues or concerns otherwise. Everything was tolerated exceptionally.

Of course, I am absolutely going out of my mind waiting til next Friday, as you can imagine!

Any experiences you have had or heard of would be greatly appreciated.

preschool

communityreply@lls.org — Thu, 02 Jul 2009 16:28:01 GMT

I was thinking of sending my 3 year old with T-cell ALL to preschool in the fall 2 days a week. He is in LTM right now and doing well. His oncologist said that it would be fine for him to go. Up until now he has not ever gone to a daycare, nursery or school, so i will be nervous about germs. But I know that he would love being around other kids and learning. I have been his playmate most of the time and you can tell he is getting bored with me and wants to interact with other kids. So I am just wondering if you have sent your child to school do they get sick more?

Mary

Let's talk about...

communityreply@lls.org — Fri, 06 Nov 2009 22:24:41 GMT

....something ELSE! Like is anyone doing anything fun this weekend?

Jason and I are doing karaoke tonight (yes, I'm a dork like that) and then tomorrow night I'm taking Emma to see the Wizard of Oz ballet downtown. She's on steroids so I'm not going to even try to make it through intermission, but they were free tickets so what the heck, right?

At some point I have to clean the house and stuff, but that's not fun at all.

GROSS!

communityreply@lls.org — Mon, 20 Jul 2009 19:45:55 GMT

Emma's craving this week on Dex was crab. Which in itself is not disgusting. But she insisted on having the kind of imitation crab (it's actually pollack + red food coloring + preservatives + chemicals) that they put in the middle of sushi rolls. We finally found an asian store that sells them here in Memphis and she literally ate almost a pound of it a DAY for three days. Ick, ick, ick!

Just curious what your kid's grossest craving has been?

reaction to peg shots?

vrontak65@aol.com — Mon, 20 Apr 2009 22:09:10 GMT

my son has t cell all and just had a reaction to the peg shots and now has to get erwinia shots has anyone gone through this already? i am really scared that he may have another bad reaction. dakota is 14 yrs old and on protacal aall0434 and still needs the peg shot 5 more times. thanks for any info. you can give me. sandi

AML

communityreply@lls.org — Fri, 24 Apr 2009 19:55:27 GMT

Hello,

I am new to this site and was going thru posts on this board and noticed that I cannot find any posts by parents with children diagnosed with AML. My daughter is 2 1/2 year old and was diagnosed with AML in Nov '08. Therefore I was looking for people with similar experience.

Thanks,

Shona

Parents...what are you doing to help you get through this

communityreply@lls.org — Wed, 03 Jun 2009 23:02:26 GMT

Hi! Can you tell me what has been most helpful for you during your childs treatment? Are there specific things that you have found help you stay calm and optimistic? Are there things other people have done for you that you found helpful? I know one of the things I do is to focus on today. Thinking about what needs to be done only for today helps keep away all those future worries. I have found other people who have had serious health problems are quite comforting. They understand so much. They are the ones I really talk to about this. Others just dont understand.....and I dont expect them to be able to understand. Who can understand ANY child having cancer! We have been doing this for a year and half and I am heartbroken every time we go to clinic and see all the children getting chemo. I am VERY thankful for all those who have gone ahead of us....and give us such hope!! So as I get to know more and more parents who are behind us in treatment....I was just wondering what has been most helpful to all of you here. Take Care!

When to apply EMLA cream to port? UPDATE

communityreply@lls.org — Wed, 24 Jun 2009 16:18:24 GMT

We have to get Emma accessed for the first time tomorrow. Talked about FREAKED! The closer it gets, the more anxious I get.

Anyway, the literature they gave us said to apply the cream 30 - 60 minutes prior. So if we do it before we leave the house (we leave 30 minutes before her appointment) is that too late? I'm just worried because sometimes they run behind and we have to wait a while to get blood drawn. How long does the EMLA cream last? Any tips you have will be greatly appreciated. She's almost four, so she's old enough to know what's going on but too young to really prepare her for it because her mind wanders too much. LOL

We are definitely doing the Glad Press N Seal, by the way. We've used it for 'swimming' in her wading pool so she's totally cool with it.

UPDATE!

Thanks so much for talking me through this. I am so glad to have people to turn to in times like this.

I talked to Emma's dad and he said she did GREAT! He said she cried when they cleaned it and when they pulled off the Press N Seal, but that the actual access/deaccess went off without a hitch. I'm so thankful for EMLA right now.

On another note, he met with her main doc who is adjusting her chemo (remember she's sensitive to 6MP) to give her the best possible shot at making counts next week and taking off on a 10-day trip to Myrtle Beach with her dad and about 30 other relatives. I never in a million years thought this doc would allow it but she obviously thinks Emma deserves a chance.

Stress after treatment....

communityreply@lls.org — Thu, 30 Jul 2009 04:02:47 GMT

This is my first time posting, I feel a little uncomfortable because my question feels selfish. My son has completed his 3 year treatment for ALL. He is actually celebrating his 3rd year off treatment this coming Sept. As I read through the posts I can so relate to much of what the parents are going through; diagnosis, stages of treatment, watching your child in pain, side affects, set backs & delays in protocol, fear and more fear. Post treatment He has had a lot of obstacles to overcome academically, socially, emotionally and the going felt slow, confusing & painful for us all...until recently; this past year he seems to have improved in strides. He was retained 1 yr in school and with a lot of hard work and finally finding the right school he is about even with his peers (except in math). All of this I can understand, but it's my own in-ability to handle stress that I can't explain. I mean we made it through the hard times, he is doing so much better, but yet stress from anything (work, relationships, city living...) it just feels like it is too much! I know somehow it is related to what we went through because my physical symptoms are the same as they were at diagnosis and I feel like I am right back in that panic, (ie. easily startled, pressure & tightness in the chest, pain in the stomach, jumpy, emotional). Is this uncommon? I feel so guilty I can't talk about it with friends or family....it's like I'm not grateful for our outcome and that I should be happy all the time...but I guess I feel that at any moment the rug can be pulled out again, nothing is safe and everyday stress is exaggerated. I want to run away from life and take my family to a safe place somewhere where we could finally let our guard down and enjoy our gift of life.

Thanks for letting me get it out - Lisa

Are any of your kids hyper sensitive to touch???

communityreply@lls.org — Fri, 06 Nov 2009 12:31:46 GMT

I have noticed recently that Jakob is very sensitive to people touching him. Yesterday he had an echocardio exam done and he was crying and moaning. He is 12 so its not fear or trying to get sympathy. The exam is just an ultrasound of your heart, no pain involved. Wondering if anyone else has noticed this with their kids? I am going to mention this next week at our clinic appt.

Thanks,

Nana

In hospital for pneumonia and swine flu....

trisharchey@bellsouth.net — Thu, 05 Nov 2009 01:52:16 GMT

All in all had to post because it (swine flu) hasn't been too bad. I was hysterical when I found out, we have been anxiously awaiting our inoculations (which arrived ironically yesterday at clinic.) Kelly is 6 months into LTM for ALL, has had a couple of rough months due to upped doses of chemo. Our troubles began Sunday - fever, trip to ER, bag of antibiotics but good counts ANC 1700, released. No fever after that, back to school on Tuesday, home at 12, 3 hour nap, woke with fever and major diarrhea. Back to ER - positive for pneumonia after chest xray, positive flu (they believe the pig variety) ANC of 200 (WBC only .9) and admitted yesterday. We've been on Tamiflu, antiobiotics, etc., but all said has not been that bad. Kelly's only complaint is having her "tubies" in, she loves having mom or dad or childlife playing with her, and she really other than a bad cough doesn't seem as sick as she is. Thought I would post because we have been terrified of the swine flu, but from the exact words of our oncologist - "look at this way, at least you get it overworth, done, out of the way, no more worry."

FluMist

communityreply@lls.org — Fri, 04 Sep 2009 04:52:30 GMT

Of course my children don't get the Flumist vaccine since it is live and we have been told not to do that. But I am hearing chatter that Eli should not be exposed to anyone in his class whom has had it. Does that mean I need to send home a letter requesting that the kids in his class only get the flu shot? And if not, I have to pull Eli out of school for 7 days after anyone in the class received the mist? That seems extreme to me. What are your clinics saying?

What are the most valuable resources you've found?

communityreply@lls.org — Sat, 07 Nov 2009 16:36:50 GMT

I've noticed, sadly, a lot of new names on the boards lately, and thought it might be helpful if we all shared the resources we've found that have been most helpful to us. These can be things we discovered early on, or things we found later and wished we had found earlier!

Other than this board and our clinic, these have been my go-to resources:

Free books from the Candlelighters Association -- http://http://www.candlelighters.org/Information/Resources/Books/tabid/287/Default.aspx

From Livestrong, the ebook "Learning and Living with Cancer: Advocating for Your Child's educational needs" -- http://http://www.leukemia-lymphoma.org/attachments/National/br_1139926622.pdf

Scott Hamilton supported site all about chemo that explains types of chemo and side effects of different chemos in easy-to-understand language (not specific to childhood cancer, but still good) -

http://www.chemocare.com

Please share other good resources when you can -- thanks everyone!

Kristen

www.aboutthewin.wordpress.com

How did you spend your diagnosiversary?

communityreply@lls.org — Fri, 07 Aug 2009 22:41:34 GMT

Look for that word in your Webster's dictionary, folks! LOL

Seriously, though, today is the 1 year anniversary of Emma's diagnosis and I wanted to mark it by doing something special. We took a gift to her pediatrician and thanked her for sending us to St Jude so quickly, and then we took cookies to Emma's clinic staff.

Just wondering if anyone else marks the day or if it's more of an occasion to be depressed? I think maybe I'm trying to stay grateful so I won't GET depressed. But unless the bomb is about to drop and I don't see it coming, I have to say the day was easier than I expected it to be.

Another question on chemo teeth

communityreply@lls.org — Thu, 05 Nov 2009 02:57:33 GMT

Hi-

I know there was a discussion a couple of weeks ago about teeth...

Fuller will go in tomorrow morning for one tooth extraction that has abscessed, and there are three more molars in question. His oncologist suggested today that if the other three cavities have even a chance to get worse, pull those as well, for a total of four molars gone ( he is 6, all baby teeth).

His ANC is 712, which is a little concerning, but platelets are adequate for the surgery.

I was just wondering if any of you have similar experiences. He is in LTM.

Also, for those OT, what has happened long term to the teeth (especially permanent)?

Thanks! Melissa

Weight gain in two weeks!

communityreply@lls.org — Thu, 08 Oct 2009 19:20:38 GMT

Hi All,

My daughter has been in LTM since Dec'08. Two weeks ago, she had to go into ER because of a viral infection (she had a fever of 102.6degF). There we found out that she had gained 7 pounds in 2 weeks - two weeks before going into the ER, her weight was 84 pounds and then in the ER she weighed 91 pounds. This was consistent when she went to the clinic next day (so it is not a question of the ER nurse making a mistake). She is 8 1/2 yrs old; however that is almost a 8-9% increase in weight. When we talked to our case manager, we got a class on how weight becomes an issue with our kids, how we need to remain active and how we should be controlling their diet. While we get that, it is not that she has been eating junk food. She has genuinely been hungry and has been taking extra helpings during regular meals. And this while she is not on the Dex pulse. She has also being doing swimming once a week and do other physical activities. Has anybody else seen such drastic increase in weight such as bloatedned due to hypothyroid)? Any ideas of what is causing her to feel so hungry. As you can see, we are concerned.....

Thanks,

Puneet (Stuti's dad)

www.caringbridge.org/visit/stuti

h1n1 vaccine

communityreply@lls.org — Tue, 13 Oct 2009 20:38:10 GMT

I realize this has been posted before, and one by me, but it got a little too long and off topic and I didn't want to get this question lost in it...

I just want to know how many kids/parents have got the h1n1 vax or are on the list to get one?

At our appointment last week, our Ped told us that in our province, they are recommending that all children under the age of 5 get the h1n1 vax, not just immunocompromised kids, because it can really attack the airways and its safer they get vaccinated.

We are therefore on list and going to go ahead when it comes in within the next month or so. The doc assured me it is safe, it isn't a live virus in the vax, it is essentially the same as the seasonal flu vax.

I appreciate your responses.

Thanks!

Advice from those who've been there. . .

communityreply@lls.org — Sun, 25 Oct 2009 19:45:57 GMT

I know we are all at different stages on this board, and sometimes I go back and read past posts to see what's to come. Sometimes it is scary, like the AVN. I can't imagine my 3yr old being on morphine for pain. Especially because right now she is walking and talking and laughing. After induction, we really needed to see this side of her again. So I thought I'd pose a question to those who've been where we are now. We are in Consolidation Phase. Is there anything you would/wouldn't have done or something you did/didn't do in one of the earlier phases that you've since learned about? For instance, should I look into physical therapy exercises, did this help or no difference? Thank you for all your advice. I really feel like the best advice is from those who've been there. God Bless, Nancy

Disinfect Halloween Candy?

communityreply@lls.org — Thu, 29 Oct 2009 20:22:16 GMT

I just started thinking about this today, as we are going "Trunk-R-Treating" tonight. Here is a link I found:

http://www.mahalo.com/answers/swine-flu/is-it-safe-to-spray-wrapped-halloween-candy-with-lysol

What are you all going to do??

Tonya

2 yr old son diagnosed Sept. 1st w/ ALL ......

communityreply@lls.org — Tue, 15 Sep 2009 03:26:21 GMT

Kort has just been diagnosed with ALL and we are in our 2nd week of treatment. It's all so overwhelming, devastating and we are terrified. I feel confident in our medical team at Children's and they have been very helpful. We have so many questions and are trying to make some plans but it seems impossible.

Kort's eating everything he can get his hands on and eating all day long. They told us he would have cravings and eat more but is this normal? He seems to mainly want carbs, won't touch any veggies and barely eats any fruit. Ketchup seems to a new food group. He's already gained weight. I don't know how his little body can hold all that food.

He also is wetting the bed every night. He's not potty trained but this has never been a problem before. He's waking up every morning soaked. We've tried several things like doubling up on diapers, going up in size of diapers and changing him in the middle of the night. Has anyone else had this problem?

Also, my husband and I are educators and Kort has been in daycare since he was about 4 months old. How do parents keep their jobs? We've both been home on sick family leave and thankfully we have a director whose totally supportive. But, how do you go back to work? Should one of us stay home? Do we hire a nanny? We are lost and don't know how to make these kind of decisions. I keep telling myself that I'll feel different once we get through induction but who knows where we'll be in 3 weeks. At times it feels our world has been tossed in a paper bag, shaken and then poured out. We are left trying to piece it all back together.

Thanks in advance for any advice or words of encouragement.

Mucositis Advice?

communityreply@lls.org — Thu, 02 Jul 2009 02:44:26 GMT

Hi everyone,

Justin and I are at the hospital again (7th stay so far), admitted for fever on Sunday and we are dealing with his first bout of mucositis that is worsening. Tom's mom recommended fluconazole, but our docs won't prescribe because there is no evidence of any fungus. He is using biotene to cleanse (which hurts terribly), magic mouthwash, morphine for pain, and they just started IV flagyl for precaution I believe. He also is not eating/drinking. Any advice would be greatly appreciated! He is in Interim Maintenance and received methotrexate again on Thursday which I'm hearing is the likely culprit, along with his counts continuing to drop.

Thanks everyone!

Parents of teenagers

communityreply@lls.org — Wed, 13 May 2009 17:00:38 GMT

Hi! Just a question to all the parents of teenagers. My son is finishing his freshman year. He is in maintenance with 2 more years to go. My question is....what all did you do to help your teenagers with school work? Did you get them tutors? How did their school manage their work. He is in school.....but is still missing quite a bit....for various drug side effect reasons. He is always trying to catch up. I am thinking we need a tutor for sophomore year just to help him stay on track. He has been in and out of school so much this past year...that it has become a struggle just to stay on top of everything. I love all the suggestions I read on this site and just thought I would ask about this subject. Thanks!

Still trying to understand. . . Can somebody tell me what each phase is?

communityreply@lls.org — Sat, 07 Nov 2009 04:33:56 GMT

Bridget has finished consolidation phase, but I don't remember what the next phase is. She hasn't begun because her ANC was only 134. Sometimes I feel like her docs are too relaxed. I know they don't want me to worry all the time, but I feel like I still don't understand alot, and I am not even sure what to ask. When I look up online about low ANC levels, they caution about not being around too many people and not eating raw fruits/veggies. Her docs tell me if she gets an infection it will most likely come from within her not from anything on outside. I know she is not in a COG study, but, she is being treated according to the COG 0331 for Standard Risk ALL. The calendar they gave me for her next phase has vincristine and methotrexate on day 1,10,21,31 and Peg Asparaginase iv on day 15 of course this all depends if her levels are high enough, which already they weren't. Does this sound like anybody else's protocol? If so, what are all the phases?

How did you celebrate end of treatment?

spookyproud@aol.com — Mon, 10 Aug 2009 22:56:36 GMT

How did you all celebrate end of treatment or how are you going to celebrate end of treatment?

I am considering bringing in food for our clinic and a cake. Does that seem like too much? I dont think its nearly enough but want to do it. Its the least I can do to show our gratitude for what they do everyday. Can you give me some ideas. Did you give your oncology nurse a gift? the doctor? the clinic? I have no idea so would love some ideas.

Thanks so much....Cheryl

Evaluation of Osteonecrosis?

communityreply@lls.org — Wed, 23 Sep 2009 19:46:49 GMT

Hi Everyone,

We are just about finished with DI, and at the bottom of our road map of AALL0232 it says "See Section 8.0 for supportive care, and in particular Section 8.1 regarding evaluation of osteonecrosis (ON)." I mentioned this to our NP, and she seemed to think that this isn't really an issue anymore with the 'new' drugs they are using--but that we could do some sort of scan if we are concerned. I told her that yes, we might as well have the scan done just to make sure?

Does anyone here have any thoughts/experience regarding this? I'm thinking that if it's on the road map, it should be done--but I don't have a copy of the entire protocol (which I guess I should--but when I asked for a copy, they just made more copies of the papers I already had).

What are the symptoms for osteonecrosis with our kids and evaluation/treatment options?

Thanks so much!

Tonya

Mouth sores can you help me?

communityreply@lls.org — Thu, 09 Apr 2009 17:53:41 GMT

I am sure you have had discusions on this topic before but I am not here as much as I would like to be and missed them. I am Sherri Sallie's Mom. Sallie has Pre-B ALL we are on AALL0331 at the end of SIM. They have been increaseing her methatrexate every 10 days. Well the last appointment was last friday and it was day 31 she got methatrexate at 250% IV and methatrexate IT Lumbar puncture and Vincristine. We have never had mouth sores before but she has them now and they are really bad. After chemo last friday we spent the next 2 days vomiting. Finally got in undercontrol and the mouth sores started. She is still vomiting just not as often. The mouth sores are so bad they bleed and cause her a great deal of pain they go down her throat. She has been on NG tube for a couple months now but can even tolerate the nutren jr so we are 1/2 nutren 1/2 pedialite and just bumped it up to 25ml an hour. She has lost 3lbs in the last week. We went in yesterday and got IV fluides for a few hours and the doctor prescribed magic mouth wash and we put her on oxycodone for the pain. Now with the mouth wash since Sallie is 2 years 3 months old they gave me these long sticks with the green sponge on the end and told me to wash her mouth out 4 times a day. Well Sallie does fine most of the time but when I come at her with this sponge she gets extremly upset to the point of vomiting and when I am able to get it in her mouth the only thing it does is cause her mouth to bleed. So If there is any other way you all may have come up with to wash out a 2 year olds mouth I like to know about it. Sorry I haven't slept much this last week and this whole mouth sore thing just makes me cry. She is in so much pain. Oh and did I mention so what is the point of the mouth wash if the end result is vomiting rinseing all the mouth wash back out of mouth. Sorry I'm very frustrated right now. Thanks for reading this.

www.caringbridge.org/visit/salliegilmer

Take Santa Letters To Macy's For Make-A-Wish!

communityreply@lls.org — Sun, 08 Nov 2009 19:26:57 GMT

http://social.macys.com/believe2009/#/make-a-wish-foundation

What an awesome idea--just love it...

To swim or not to swim

communityreply@lls.org — Mon, 13 Jul 2009 23:15:52 GMT

My husband and I are not in agreement. My 8 year old daughter (dx HR ALL) is 11 months into LTM. A few weeks ago her ANC dropped to 40 as a result of an increase in her 6MP. Last week her ANC rose to 840 and her chemo resumed. She has been invited to swim in a kiddy pool with a friend tomorrow. The mom said that she will put "fresh water" in it, but sometimes the family dog gets in. I have not let Madelyn swim at all since dx in Oct '07. My husband thinks she will be fine and now her hopes are up, but I am really worried. Any advice would help us decide what to do.

Thank you,

Shari

Galapagos Make-A-Wish

djlawman@yahoo.com — Sun, 24 May 2009 02:48:25 GMT

Second time's a charm, as they say. (Long-timers will remember that we started this trip last year, but that a certain airline screwed things up so badly we missed our cruise in the Galapagos, and just headed home).

By way of background (in light of the other thread on what to choose for a MAW), Sam had pondered it for several years, during treatment. We kept asking MAW if he could wait longer. He did not want to plan something while still on treatment, and then find it was a week he was feeling like crap. So, after an aborted attempt last year, it was rescheduled for this year.

Sam saw, on the MAW site, wish.org, that at least one other kid had wished for the Galapagos, and since he missed an optional trip run by his HS AP Biology class teacher (we could not let him go so far from medical assistance in the middle of treatment), he wished for the Galapagos. And through the generosity of MAW, and one of their big partners, a big accounting firm named J.H. Cohn, his wish was granted.

We all went (Sam, the two of us, and our daughter). We had a great trip -- the trip of a lifetime. It's like being in a completely different world. Different environment, different species, all amazing. We cruised on a great boat for 5 days, with things to do in and around Quito Ecuador before and after the trip.

Here we are on one of the islands with one of the local residents. The birds and animals there have no fear of humans.

Sam was in good health, completely recovered from the double Pneumonia of a few weeks ago, and we had a terrific trip. MAW is fantastic, and I hope to dedicate a great deal of time in the future to fundraising for them.

Other than my wife getting a little altitude sickness in Quito Ecuador (altitude 9300 ft.) after we went up to about 13,500 ft. at a volcano national park, there were no problems. The women were a little queasy with the rocking of the boat on the ocean between islands and at night, but nothing major. (fortunately, we had a virtual pharmacy of anti-nausea drugs left over from Sam's treatment, including Zofran and Scopalomine patches.)

I'll post more details and more pictures, if people would like to see them.

Doug

Frustrated - need to vent!

communityreply@lls.org — Thu, 14 May 2009 00:26:00 GMT

Most days I can deal with it and it just rolls off my shoulders, but maybe it's because we're temporarily moving this weekend to the city where Domenic's hospital is and then starting DI next week, as well as preparing all the baby stuff for delivering out of town, but I've had enough of people looking at Domenic when we are out and about (ie grocery store) and recognize him as the boy with cancer and get the 'oh he looks healthy' with the look that goes along with it that almost mocks the fact. Because he looks and acts like a normal healthy 2.5 year old little do people know all the medications, pokes, chemo treatments, side effects and overall crappy times that go on behind the scenes. Do people expect us parents to take our children out when they are in no shape to do so, for everyday errands unless absolutely necessary? I wish more people were understanding of what living with this disease is truly like for our children as well as the impact on us parents before casting judgement. If they only knew!!

Delayed Intesification?

communityreply@lls.org — Fri, 10 Jul 2009 00:09:58 GMT

So we are about to go into interim maintenance, which means DI is right around the corner. I have heard that this is obviously an intense period of their chemo. I know every kid handles it differently, but I was wondering how your child handled it? What are the new meds that are introduced, what side effects have your kids had from these meds?

On another note, I am having problems with anxiety since Ezra's DX, I was wondering if anyone else had problems, and what helped you, I am thinking of seeking help for it, but I am kind of embarrassed...I don't know why.

Caringbridge Issues

communityreply@lls.org — Mon, 26 Oct 2009 03:43:31 GMT

Has anyone on here had issues with wierdos on caringbridge. We seem to have almost a stalker who keeps coming to our site and leaving distrubing comments. We delete them but what have others done.

Alex's Lemonade Stand Foundation Heroes

djlawman@yahoo.com — Thu, 16 Jul 2009 11:49:10 GMT

Many of you know about Alex's Lemonade Stand Foundation, formed initially by little Alexandra Scott while she was being treated for cancer, to raise money for "her hospital", Children's Hospital of Philadelphia, so that she could help other kids who had to go through cancer treatment. Volvo is a big national sponsor, it got a lot of press a couple years ago at the Kentucky Derby with Afleet Alex running, etc.

The foundation is now run by Alex's parents (Alex passed away in 2004 from neuroblastoma), Jay and Liz. We met Jay and Alex briefly when they were inpatient at the same time as Sam back in 2004, in the next room, at CHOP.

The Alex's Lemonade Stand Foundation website, http://www.alexslemonade.org/

now has a section devoted to "Heroes". Parents of kids with cancer can submit their child's story and picture, which will be displayed on the Alex's Lemonade website:

http://www.alexslemonade.org/newsroom/heroes

I thought it was a nice idea, and asked Sam if he wanted to be on it. He did, so I just submitted our story (which is not up yet). I thought others might want to do so as well.

Doug

off-treatment counts

communityreply@lls.org — Thu, 10 Sep 2009 16:35:07 GMT

Just wondering if a wbc of 3.5 is reasonable after being off treatment for 5 months. I was kind of upset to see this today and was hoping it would have been higher like last month which was 5,0. Other counts were ok, hgb 14 (a slight increase), plts 226 (down a little from last month) and mono's 12.1. His anc was 1600.

The doctor didnt seem concerned so I guess I shouldnt either, yet it does bother me.

So, what have others experienced in the months following the end of therapy? I would love to know your experiences.

As always, thank you

6MP RASH

communityreply@lls.org — Tue, 04 Aug 2009 21:42:19 GMT

Almost since the beginning of maintenance Alex has had a 6mp rash on his chest and back. Over the last month or so it has gravitated toward his face. All the docs were surprised because they never see the 6mp rash on the face until the end of treatment - more when the body is tiring of all of the meds. Everything else was ruled out so we know it is medicine related and looks typical of 6mp. My question is - has anyone else experienced the 6mp rash on the face mid way through treatment. Also if anyone has any success with creams/lotions to help. I have tried several different moisturizers and some have helped a little.

Anyone else with a child that has Hodgkins Lymphoma?

communityreply@lls.org — Fri, 30 Oct 2009 00:28:18 GMT

My 10 yr old son was diagnosed with Stage 4b Nodular Sclerosis Hodgkin's Lymphoma (NSHL) last month. I have three other kids that are 8,7 and 4. Life has been so crazy since he was dx'd. He has been in the hospital for a 4 day stay for a neck biopsy and testing then another 10 days for a lung and bone marrow biopsy and his first round of chemo. He will be having 3-5 rounds of chemo DVBE-PC and 3-5 rounds of LD-IFRT. He was in a lot of pain after his lung bio. because he had to have a chest tube for 5 days then they started his chemotherapy the same day he got that out so the next 5 days he was sick and in pain. It was really hard on both of us but he is has been so strong and positive.

I would like to talk to other parents who have gone though the HL dx or are going through it now but haven't really found many places online that are active. This is a great board and I have been reading here and it has helped so much. You are all such strong parents and for the parents of kids with leukemia, you are just amazing. Matthew will have to have treatment for 6-8 months and while that is awful I couldn't imagine having to go through this for years,you are all such an inspiration. I wish the best for all of you. I will probably be here a lot if you will have me.

Believe in Tomorrow

pnichols63@verizon.net — Thu, 02 Jul 2009 04:40:50 GMT

I want to give some information on Believe in Tomorrow:

http://www.believeintomorrow.org/

We had our Make A Wish trip last year, Tomas wanted Lego Land so we went to Lego Land. First class tickets, limo, spending money....the works.....we were alone, from some perspectives this was good, from other perspectives it pointed out differences between our normal and everyone else's.

Our hospital told us about the Believe in Tomorrow (BIT) organization. We signed up for it and currently we are having a vacation in Ocean City MD. There are some differences between MAW and BIT. The first major difference is that they do not pay for your transportation to Ocean City. The second major difference is that they have managed to get Ocean City completely open to us. We have a complete run of the town, no charges, they only ask that we show up when we agree to show up. They give an orientation on Monday where you get to pick and choose what you want to do for the week......Pirates, Beach, Amusement Parks, Museums, Coast Guard....pretty much all that is at Ocean City is yours for the asking.

There are multiple dinners, lunches, breakfasts to be had at the beach house. This is where multiple families end up meeting. The children are fighting various battles and are in various stages of the battle. Today we went out on a Coast Guard Ship with another ALL family. We picked our day for tha t Coast Guard, their day happened to be on ours....

If you can figure out a way to travel here, it is well worth the price.

Am I the only one?

communityreply@lls.org — Sat, 24 Oct 2009 04:14:46 GMT

I feel like I must be a horrible person, but everytime I see a pink ribbon for breast cancer awareness I'm upset! I'm upset because Sept. came and went with barely a whisper about it being childhood cancer awareness month. I mean the pink ribbions were coming out before it was even October. There are many, many other kinds of cancer besides breast cancer, yet that is the one that gets ALL the attention. Does it bother anybody else that there isn't 1/10th the "awareness" for anyother cancer? To make things worse twice in the last month when someone found out my son have leukemia they got this worried look and asked "is that contagious?" It's all I can do to explain that they don't need to worry about his "germs" he has to worry about thiers instead of screaming.

Breast Cancer affecting Children!!!

communityreply@lls.org — Tue, 27 Oct 2009 11:16:17 GMT

Ok I know how I feel when I see pink ribbons, it hurts me because as so many stated before September came and went with little notice to our kids. Well someone stated that it would be nice if the pink ribbon could embrace the gold. Well I don't see why that should be a problem especially now w/ kids getting breast cancer. Here is an article my mom sent me.

http://www.cnn.com/2009/HEALTH/10/26/tweens.breast.cancer/index.html

This is scary! We are having a rise in all cancers and no one knows why. Anyway, gotta get ready for school just thought I would share that article.

Extremely worried

communityreply@lls.org — Fri, 23 Oct 2009 19:10:21 GMT

I just got my daughter's blood test results and there was written that a small part of lymphocytes are reactive and singular myelocytes are seen. Sounds horrible! I am so scared that she has already relapsed. Do you have any idea what this means? Weekend is coming and I cannot reach the Onc now.

Math processing affected by chemo?

lzperkins@yahoo.com — Fri, 15 May 2009 00:54:51 GMT

Hi, Jasper has been in treatment for ALL since Jan 2007. He has had numerous IT methotrexate procedures and he is having trouble remembering basic math facts. He also gets tired at school and cannot complete as much work as his classmates. We are writing up a 504 plan now so he can have accomodations at school and the clinic has not been answering my phone calls and emails! I want to know what I need to put in the 504 for him. He missed a lot of school this winter and it was hard to keep up. Is the school required to provide him with a homebound tutor? What about neuropsychological testing to confirm if he has neurological damage? Thanks so much for posting a reply if you have negotiated this process before. I will be so grateful to hear back from you. It is really a boon to me to know that his community exists, because no one else really understands what we are going through. Thank-you and God Bless You.

Concerned Mom

communityreply@lls.org — Wed, 07 Oct 2009 17:41:28 GMT

I'm not sure if this is the right place to ask about this, but I am a concerned mother. My son is 3 1/2 yrs old and will be 4 in January. He has an enlarged lymph node on the right side of his neck approx 2 cm, moveable. I first noticed it on August the 2nd. He did have some mild symptoms at that time, nasal drainage but no fever or anything significant. His pediatrician said not to worry, that it is viral. I spoke with another pediatrician about 2 weeks later and she started him on amoxicillan for 10 days. It seemed to decrease the node a small amount only but it still remained at approx 2 cm. We were referred to an ENT who did an CXR and ultrasound which the CXR came back clear and the ultrasound noted a minimally enlarged lymph node measuring I believe around 2.2 cm by 1cm. There was also another lymph node on the left that was noted, but barely enlarged. The ENT decided to watch the node and we made a f/u for 2 more weeks. About a week later my son ended up in the ER for urinating blood, which ended up being Post Strep Glomerulonephritis. So according to the lab work and ASO titer my son had a strep infection sometime in the recent past. This was odd because he never had symptoms of strep and was treated with amoxicillan. He recovered fine and we were able to come home from the hospital the next day. When we followed up with the ENT, she didn't think strep could have caused the lymph node swelling due to its location. It is a cervical lymph node but posterior, so behind the ear mid neck. She also thought the lymph node was approximately .5 cm smaller (measuring with a ruler). Therefore she still wants to watch the node and we made another 2 week f/u. My delimma is that it has been 11 weeks since the node has been there (at least), it has not grown, but I feel it is questionable if it has decreased. My son does not have any other symptoms, and the 2 cbc's that have been done, 1st time in August and the 2nd last week were both normal. How long should I wait or watch this lymph node, or should I push for an immediate biopsy? I am very concerned about lymphoma. If anyone has any advice, I would greatly appreciate it. Thank you, Kelly

meds at school?

communityreply@lls.org — Tue, 25 Aug 2009 13:17:16 GMT

I am having my final meeting with Jakob's school this week and was wondering what others have done about giving medication at school. We live about 1hr away from school(with traffic), so he needs to bring them with him in the morning. Most of the time it will only be neurontin, but he takes it in liquid form and I was wondering if any of you have experience with those stoppers you put at the end of syringes? I know they aren't suppose to leak.... I've been trying to figure out what would be the best and easiest way to ensure a proper dose. Any ideas?

Thanks in advance,

Nana

Just a happy story of love and support....

communityreply@lls.org — Mon, 08 Jun 2009 13:17:14 GMT

This weekend in my area our local cancer foundation held its annual Shaved Head Challenge. Awhile back I had taken my oldest son (not cancer kid) to the barber and noticed they had a sign up to participate in this fundraiser, I thought "Wow that's really nice!" As I was speaking to the ladies that run the salon they told me they were both going to shave their heads and asked if my son Jakob would come as the guest of honor. When I got home Jakob said he would and when my nine year old daughter heard us talking she immediately said she wanted to shave her head too. So after some talking to make sure she really wanted to do it she started to fundraise and managed to collect over $1100. The amount she raised made us so proud of her, but not as much as watching her sit down in the chair with a huge smile and let all her hair go. After she was done she walked around with such pride it almost made my heart burst. It never stops amazing me just how fantastic our kids are, whether it is the cancer kid or their siblings, their strength just takes my breath away!!!

Sorry, if this sounds like bragging but I really am so very proud of her and I thought maybe this story might put a smile on someelses face too!!

Nana

First post to the board...

communityreply@lls.org — Fri, 10 Jul 2009 20:28:42 GMT

My daughter, Brookelyn, (age 3) was diagnosed with Pre B ALL (standard risk) last November. She is being treated at Vanderbilt Children's Hospital in Nashville, TN. I have been reading this board for a while, but today decided to post for the first time. She was classified as an early responder with less than 1% blasts after one week of chemo, and also had a more favorable cytogenetic study.

We had a tough go during induction, with several fevers and blood cultures, but none of them were positive. Steroids were really hard on her. She went from 35 to 50 pounds in one month, but has since returned back to a more normal weight. I believe a 3 year old tends to be moody anyway, but put one on steroids, and it can be crazy at times. We are very thankful for not having many issues during Consolidation and Interim Maintenence. The doxorubicin in the delayed intensification phase made her very sick (nausea), but we mangaged to escape the mouth sores. All in all, I feel like we made it through these phases as good as could be expected, and for that we are extremely thankful. It truly was amazing to watch this little girl bounce back from these awful treatments.

Brookelyn started LTM on 05/15/09. (Her older sister's 6th birthday, no less) We just had a two week delay from the last chemo of DI, until she was declared ready for the start of LTM. Her ANC was close to 2000. So we proceeded with ITX Methotrexate, Vincristine, and the 5 day steroid pulse. (dex) She would also be taking 6MP nightly with oral MTX on Thursdays. We went back two weeks later for counts on 5/28, and she was at about 1300, so we were told to come back on 6/11 to get counts and Vincristine. On 6/11, her ANC was 1300, so we recieved the VCR and was told to come back in a month. I believe the doctors felt like she could tolerate the current doses as her counts was right were we wanted them. We had a month of no clinic visits and lots of just being a normal family. Pools, parks, and cookouts were all something we took for granted before, but no longer.

We went to clinic yesterday for VCR and counts only. To our surprise, Brookelyn's WBC was 1.0!! Her ANC was pretty much 0. You could tell that the Onc was a bit surprised. We have discontinued all oral medicine except for steroids for a week, and then we go back to have counts checked. I have read enough on these boards to know that there are many children with delays in LTM, but I am shocked to see her bottom out two months into LTM. I guess I was wondering if I should be more panicked (relapse?), or does this sound like the typical case of adjusting 6MP and moving forward.

Thoughts?

Immature Granulocytes???

communityreply@lls.org — Thu, 21 May 2009 15:02:41 GMT

Hi everyone, I always get great answers from here so here is a new one to me.

My daughter is 8 and in DI for ALL. We are currently hospitalized for an Ecoli blood infection. She was initially hospitalized last Saturday and sent home Tues on IV antibiotics. Yesterday we had to come back due to feveer and severe back pain. She just finished high dose steroids which they say mask a fever and signs of infection.

Her ANC is around 300 for past couple of days. It appears to be dropping some. However her WBC has gone from .9 to 3.7 in past two days. Obviously mainly leucukocytes. Her platelets and RBC is starting to drop pretty quickly. From midnight last night to 5 this morning her RBC went from 9.8 to 8.7 and her platelets 160 to 98. We finished our third dose of Dox last week so that is to be expected somewhat.

Anyway we have gotten the past two days also counts for Immature Granulocytes. I have never seen that before and a whole lot doesn't show up under Google. There is something about infection with it and then leukemia, but I was curious if anyone else had ever seen this. The number has more than doubled from last night to this morning. The word IMMATURE freaks me out some I know you know what I mean.

Our oncologist doesn't make rounds till late this afternoon and the only room they had is in the infant critical care cardiac unit. Needless to say we sort of stand out as the only 8 year old bald person on the unit . And they have no clue.

Larisa

Questions about going off treatment and relapse

communityreply@lls.org — Wed, 16 Sep 2009 21:44:34 GMT

Peter has standard risk ALL. He has 11 months of treatment left, and for the first time, it seems like the end is in sight.

We were inially told that his prognosis was greater than 80%. I was never really sure what this meant. Does that mean that his chance of living was 80% and his chance of dying 20%. Or is that the chance of relapsing or not, or the chance of getting to 5 years of remission without relapse?

I have never thought too much about relapse. I mean, it is always at the back of my mind, but I don't spend too much time thinking about it. Not long ago, Peter had 3 weeks off chemo due to low counts and a virus. We love not having to give him chemo, but by the end of that 3 weeks, relapse was more and more on my mind, and we were pretty glad to restart chemo. It made me think about what it will be like to go off treatment and not have the safetly net of chemo there.

Does anyone know the actual figures? How many kids with ALL actually relapse, and when do they relapse in general? What is the prognosis if they do relapse?

I seem to recall that about 10 % of children relapse in the first 6 months off treatment. Is that 10% of all ALL children, or 10% of all children who will relapse?

For those parents whose children have finished treatment, how worried were you about relapse when treatment ended? Was it just an occasional worry or were you consumed with it, or did you not give it a passing thought?

Is going off treatment as wonderful as I am expecting, or is it a bit of a let down like going on Maintence was?

Anyway, I will appreciate any answers to all my questions. I am a worrying sort and like to know exactly what I am in for.

Thanks in advance,

Bridget

Small World

djlawman@yahoo.com — Thu, 11 Jun 2009 15:23:31 GMT

So, I am flying home to Philly from Milwaukee yesterday. A pregnant woman boards and takes her seat in the window seat next to me (one of those small commuter jets, with 2 seats on each side of the aisle).

She makes a comment about being pregnant and getting the seat belt around her, and we begin discussing kids. Find out she has two others, 5 and 4. I tell her about my kids (now 20 and 23).

I pull out pictures on my cell phone, and I show her a picture of the family with a sea lion in the Galapagos. We talk about that, and I tell her we were on a Make-A-Wish trip down there, and that our son had leukemia.

She stares at me. "Your son had leukemia?" Yes, I tell her. "Mine too," she replies.

Turns out she lives about 12 miles from us, her son (4 or 5, I forget) just completed treatment in November for standard risk pre-B ALL. Also treated at CHOP, and seen by the same doctors who treated Sam at CHOP's local oncology clinic in South Jersey.

So, we had a lot to talk about for the next 2 hours on the plane.

Talk about your small world.

My daughter is 6 and just diagnosed with ALL

communityreply@lls.org — Sun, 06 Sep 2009 22:32:44 GMT

Hello,

My daughter's name is Kailee and she was just diagnosed on August 17, 2009 with ALL. We are over half way through the induction phase. It is nice to find a place where people are going through the same thing and learn from one another. Kailee had Vincristine on Tuesday and has been extremely tired ever since. It is hard to watch her just lay around. She is usually full of energy. What can I expect as time goes on? I have read everything that the hospital has given me and then some. Thanks for any and all responses.

H1N1 in the house?

communityreply@lls.org — Wed, 04 Nov 2009 22:01:20 GMT

Has anyone had anyone in their household other than their cancer kid get H1N1 or a bad case of flu? I am not sure, but our non-cancer kid, almost 4 year old, got a temp last night and is miserable today. Fever, chills, achy, water eyes, etc. A little bit of runny nose, but not too bad yet. If he is not better by morning, after another good night's sleep, I plan to take him in to the pediatrician. IF it is H1N1, then my plan was to call the onc and ask what course of action to take. Am I being too laid back? Should I be calling our onc now? What are you guys' thoughts?

Question about LTM and prednisone.....

communityreply@lls.org — Sat, 08 Aug 2009 14:29:28 GMT

My son just started maintenace which means starting back on prednisone and mercaptopurine. I noticed that after taking prednisone in the morning his cheeks turn bright red and last all day. He said they feel hot and sometimes burn. Anybody else have this happen? Does it go away after they get used to having it in their system again? He is afraid it will always be like this when he has to take it and is worried about how it will look when he goes to high school this fall. Thanks for any input you can give.

please pray for bryce

communityreply@lls.org — Sat, 09 May 2009 15:51:09 GMT

Hey i just wanted to let everyone know that bryce is on a ventillator and they are doing all kinds of tests on him. We don't really know whats going on yet but I'm scared to death. He's in critical but stable condition

Stroller for older children?

communityreply@lls.org — Fri, 08 May 2009 16:03:06 GMT

My granddaughter, Lily, is 8 years old. Her mom, Larisa, and I like to walk together in the afternoons. However, we can't leave the kids unattended, and it's often late before Lily's dad gets home from work to watch them. So, we were wondering if any of you know of a stroller for older children. Lily is 8 years old - probably weighs around 50 lbs. It would be good for her to get out and get fresh air, but the chemo has made her legs too weak to walk very far. So we'd need a stroller strong enough to carry her weight plus large enough to fit her height. And we'd like one that isn't too difficult to push. I've Goggled them, but haven't yet found anything that looks like it might work. Any suggestions??? THANKS!

The port and airline security?

communityreply@lls.org — Sun, 18 Oct 2009 01:07:04 GMT

Just a curiosity question my daughter (Lily's mom) just called and asked me. I told her I'd post the question here and call her back. She's out running some last minute errands and can't post it herself right now.

They are leaving for their Make-A-Wish trip tomorrow, and she was wondering if Lily's port would set off the metal detectors at the airport security checkpoints. This will be their first long-distance travel since Lily was diagnosed last December. Can anyone share your experience with that?

Thanks,
Carol (Lily's grandma, http://lilysgarden.org)

bryce is doing great!!

communityreply@lls.org — Thu, 14 May 2009 18:02:22 GMT

Hello Everyone!!

First I would love to thank everyone for all of the support that you have given us without all of you I don't know what I would of done I'm so thankful for everyone's thoughts and prayers. Bryce was taken off the ventillator yesterday and off the heart med's today so today is just a day to get him rested from all the sedation med's they were going to move him up to another floor but they have no rooms. We met another family that lost their son yesterday. He had leukemia and had gotten a fungul infection which caused a stroke and the stroke caused him to have no brain activity so they had to make the hardest decision a parent could make and his wishes were to go home and not live as a vegatable for the rest of his life. The only thing we are waiting for at this time is for him to rest and see what the hemotology want to do if they are going to do a bone marrow/spinal tap and a MRI on him. We don't know yet what the plan is but I just know that he's doing really good and thats all that matters right now!!

bone marrow transplant question

communityreply@lls.org — Tue, 05 May 2009 21:39:05 GMT

Ok so we got some of the news today about Bryce's bone marrow transplant....they said none of us are a match right now but I don't know if that means further testing will be done to see if any of us are close or if they are going to go to the blood bank its very confusing right now and scary.

New SubType of T-Cell ALL called "ETP-ALL"

communityreply@lls.org — Wed, 26 Aug 2009 16:42:54 GMT

I was doing some research on the internet last night and came across some articles about a new Sub-Type of T-Cell ALL which has an extremely poor prognosis. I googled "ETP-ALL" and several articles popped up. The first article was dated Jan 2009...

One article from CancerConsultants.com (Jan 2009) says researchers from St Jude and Italy have reported that they have identified a subset of patients with T-Cell ALL, called ETP-ALL, which connotes an extremely poor prognosis. The details of the study appeared in the Feb issue of Lancet Oncology.

Another article:

http://www.medscape.com/viewarticle/587102

It may be worth talking to the oncologist about this.

Connie

need support...re: flu w/ no ANC

communityreply@lls.org — Mon, 11 May 2009 05:06:54 GMT

I know I have been throwing so much out there but I really need some support tonight. We brought Bryce to Indianapolis on Friday and he was really sick when we got here. They rushed him to ICU and inserted a ventillator into him and they keep saying he's very critical I'm so scared right now they seem to keep upping his vent one minute and then loweing it another they also keep boosting up his heart medication one minute and lowering it another. I'm just soo scared he's not going to pull through the ICU dr told me that its very hard to get kids well and that she hasn't seen a lot of kids pull through so that makes it 10x's harder for me to sleep,eat and think I just wanted to know if there are any successful stories to what we are going through? I don't know what to think I had my spirits really high all day because he was doing good they started 3 cc's of formula today also by inserting another tube into him so to me that means improvement but the only thing I hear is he's a very sick little boy which I know that but just wanting to know if he's even a little improved. He has/had croup but they said they will not test him again for it that they are giving him quite a few antibiotics. He also hasn't had a fever in 24 hours so to me that is another improvement. I just need some support right now I'm scared to death that my baby isn't going to make it

desperate!!

communityreply@lls.org — Wed, 20 May 2009 23:46:16 GMT

I never know how to start writing it all seems like its just jumbled in my head so its so hard for me to keep up with what im writing. Well we are back at our old hospitl we were transported back yesterday. I spoke with the dr today and she said that its time to check bryce's bone marrow to see if there are any leukemia cells in there and basically if there is an army of them so I'm guessing 50% or more then we are doomed but if its less than that we might have hope but my husband is telling me that she might just be saying that to be nice to you and not want to scare you he's saying he should have 0 they said that his blast is 1% but its what is in the bone marrow that they are looking at so I guess if tomorrow he has a small amount she's going to get his bone marrow transplant going so he can get it soon but if there are a few cells I don't know what is going to happen we can no longer give him intense chemo because it keeps messing up his brain so our only option now is the trial med he's on I just need someone to talk to I'm so frustrated with cancer and every time i look at bryce I cry because if the cancer comes back there is nothing else to do his body has become immune to the chemo The only thing left to do is pray that the trial drug will work and that GOD will be watching over him!!

Heather

Help - Son no longer makes IgG - need Advice?

communityreply@lls.org — Wed, 15 Jul 2009 22:03:14 GMT

Hi. Thanks for reading this. I hope maybe someone will have some info for me. First, background info: My son Thomas finished 3 years 5 months of chemo for T-cell ALL in October 2008. He started getting IgG transfusions about a year into his treatment. He had a sinus/cold/crap infection for about 6 months when they checked his IgG level and it was 100. He has been getting transfusions every 8 weeks since. (At first he was getting the transfusions every 4 weeks) We thought that once he was off chemo his body would start making it's own G, but it hasn't. The oncologist said the chemo could have caused him to stop producing this antibody. My question: Does anyone else have a child with chemo induced IgG problem? Is there a cure for this or is he going to have to get these transfusions for the rest of his life?

The oncologist said he will do a complete test of all his Immunoglobulin levels once he's off chemo for a year. He won't do the tests before a year. If they do the tests before it may not give correct results because the chemo can stay in their body for up to a year.

This is a real problem because at about 7 weeks his immune system is low because he starts getting the cold/sinus infection. Then the Dr orders the IgG test. This takes about 2 days to get the result. Then they have to schedule the transfusion which can take another couple of days. So for about a week he is sick. In May he got the swine flu during this time and was in the hospital for 3 days. Right now he has the cold/sinus plus pink eye. I want them to just do the transfusion before he gets symptoms. I don't want him to die from some bacterial/viral infection that could be prevented if only he would get the transfusion before he gets the symptoms. He's pretty skinny and only weights 120 pounds, 5'8". Most everyone thinks he looks great, but I can see how weak he is. He tries hard to be like all the other boys his age, (he's 15) but it takes alot out of him. I can see it. I just worry so much of course. Anyway, thanks any info you can give me. Connie Tom's web site is: www.caringbridge.org/visit/thomasfrasier

just updating!

communityreply@lls.org — Thu, 28 May 2009 20:42:00 GMT

Hey Everyone just wanted to tell everyone that Bryce celebrated his 2nd birthday yesterday!! He's doing ok but the dr's said its probably getting closer because his breathing is getting a little harder and they said that sounds like his organs are starting to shut down but I'm not giving up yet I still have hope and hoping for a miracle and we just pray a lot! I feel so horrible I just hold his hands and cry. I still can't get a hold of anyone about the lestarurtnib.

update on bryce...

communityreply@lls.org — Mon, 25 May 2009 03:22:14 GMT

Just thought I'd write and let everyone know that bryce is doing ok he's stable. We have been pretty busy over the last few days with a lot of family the nurse didn't think he was going to make it Friday but he's doing a lot better now that we have pepcid going into him I totally forgot about it and you could tell something wasn't right but that did make a difference. We are still giving him the lestaurtin and praying that this is our medicine that is going to work and get him into remission then he can have his bone marrrow transplant. This is my only hope at this time and I do know what to expect if it doesn't work. Our friends and family would like us to try to take him to St.Jude's but our dr pretty much told us they would tell us the same thing another friend said that his grandfather went to a hospital in Texas and they did great. He goes back to the hospital on tuesday for labs and I'm praying that something is going to come out good because we need a miracle right now my husband lost his niece to Tay-Sach's on Friday and we need a break. I really want Bryce to get better so keep all the prayers coming we need them!!

Heather

22 mos old has cancer and relapsed

communityreply@lls.org — Fri, 17 Apr 2009 23:10:24 GMT

Hello

I have been reading a lot of stories of others going through what my family and I are going through. My son was diagnosed with ALL leukemia T cell they are talking about doing a bmt when he goes into remission I was just wondering if we could get any feedback on anybody else that has been through this trying to find others that are in his age group to try to understand but would love to hear everyone's stories thanks.

Swine Flu and Low IgG Level

communityreply@lls.org — Wed, 26 Aug 2009 14:59:35 GMT

I just want to remind everyone about the Swine Flu. My son Thomas had this flu in May. He also had very low IgG level at the time. His symptoms: The first day he had diarrhea and the next day started vomiting and stomach pain. Within a total period of about 24 hours he was so dehydrated he couldn't hold any fluids down and was so weak he could hardly walk. At first I thought it was his normal runny stools, but the next day I realized he had to go to the hospital. He was inpatient for 3 days and they did the IgG transfusion while there. I just wanted to let you know this is in case you see these symptoms. From all the info I had heard about the Swine flu it was mostly respiratory, but not for Tom.

my son will not eat

communityreply@lls.org — Mon, 27 Apr 2009 04:46:44 GMT

Hello,

We just got out of the hospital after a 5 day stay he had donarubicin for 48 hours straight then vincristine and a peg shot. He hasn't ate all week maybe a 4 oz bottle here and there but other then that he's had no food he acts like his mouth is burning or its burning when going down I don't know what is wrong with him he usually loves food just wondering if anyone else has gone through with what we are going through and any suggestions of what I should feed him we have tried baby food and baby fruit and have even mixed the fruit with baby cereal he acts very hungry but just seem's like its hard to swallow or burning. They are talking about doing a g tube but we are afraid of infections he has lost about 2lbs from not eating.

Heather

chemo causing brain damage

communityreply@lls.org — Fri, 08 May 2009 21:44:37 GMT

Hello,

Well we went to the dr's today and bryce had his cbc done and his platelets came back low so the dr tried to do a lumbar puncture but he was bleeding a lot and so she didn't continue and said that there has never been any cancer cells in there so she wasn't reallly worried about it so he got the new experiment drug to keep him in remission because he will need to stay in remission and they are looking for a bone marrow donor right now.I talked to the dr about Bryce not being able to eat and she called the neurologist in the neurologist said that the test from the MRI show's that something is wrong with him swallowing and they are going to do a g tube. Our options right now are if he comes out of remission do we continue to give him chemo and let the chemo mess more of his brain up and then he will be a vegatable or do we just let the cancer take him? He just started a drug called cephalon. I'm so scared of him coming out of remission and now I'm scared of the bone marrow transplant I didn't realize that they give him the bmt after wiping out his system

worried about blast in blood

communityreply@lls.org — Thu, 14 May 2009 20:14:01 GMT

Hello again!! Well like I said earlier Bryce is doing good but I'm concerned because he recieved chemo about 2-3 wks ago.Donarubicin and it ran for 48 hours, vincristine,and peg and I think that was supposed to keep him in remission until we find a donor and supposed to get vincristine each week but now I'm not sure if he's coming out of remission and what's going to happen I'm so scared again as usual. they are looking right now for a donor and from what our dr's said it takes 2 days to find a donor but he has to be in remission before he gets his bone marrow transplant I don't know whats going on anyone else have these problems?

scared!

communityreply@lls.org — Sat, 16 May 2009 18:52:44 GMT

Well we are still in the hospital and they won't give bryce his trial med and it hasn't ever been given to a child before and it was given to us by our dr's up in Michigan so they say they can't legally give it to him here its called something like litheran or something along those lines. They say that the trial med is the one that is going to keep him in remission but I don't know his road map and I'm scared that if his cancer comes back if they will be able to do anything . They say that the chemo is making his messing up his body like thats why he has "stroke" like systems is from the chemo but I don't know its so scary. He still has the flu and I think we are going to be transported back up north because we really want to get his meds in him so his cancer don't come back. They have found a few matches for his bmt so I'm hoping we will make it there soon!!

Heather

confused ??

communityreply@lls.org — Fri, 29 May 2009 04:36:13 GMT

Hey everyone I was reading through a lot of other's that have posted and now I'm really concerned about my son and the Dr's up here. He was diagnosed at 11 mos with t cell ALL he was in remission until about a month ago and when the test came back for his cancer he has ALL/AML but when I was reading others I seen that they were getting BMT's even when not in remission? Or did i not read something right? I'm not sure we are even getting proper care. I know his body has become immune to the chemo but just wondering if there is anything else we can do or do we just sit around and wait for him to go it just seems like there should be something else that we can do I'm so confused of what the heck is going on

Common Variable Immunodeficiency (CVID) and Leukemia?

communityreply@lls.org — Mon, 21 Sep 2009 23:13:46 GMT

Hi Everyone. I am wondering if any of you have heard of CVID before? Tom finished chemo last October, but his IgG level has consistently been low and he's getting IgG infusions every 4 weeks now. The doctors seem to think Tom had this since birth, since it seems to be an X-linked Chromosome abnormality. At first they were thinking that the chemo had destroyed his immune system. If you google CVID there are several articles about this. I was just wondering if there are any other children out there with this. After reading several articles, the symptoms are among a host of other things, arthritis, gastro problems, skin problems, frequent infections, and a higher risk for Lymphoma (I'm assuming Leukemia fits in there somewhere). Thanks. Connie

lestaurtinib

communityreply@lls.org — Tue, 19 May 2009 23:34:05 GMT

Bryce is on this chemo and he is the 3rd infant to use it she said another child in north carolina was the first just wondering if anyone else has used it kind of concerned but this is only hope!!

Processed Meat Link to Cancer

communityreply@lls.org — Sat, 29 Aug 2009 17:06:51 GMT

http://www.silobreaker.com/processed-meat-cancer-link-5_2262534461671342126

I was feeling pretty good about this not being true when djlawman posted a link dispelling it, until I saw the story on the news last night. Now I'm starting to think there is some truth to it and we are going to have to change our eating habits, although there is no mention of a link directly to Leukemia.

Thoughts?

MTX & 6MP - how careful are you handling??

eric@robertsirwin.com — Thu, 16 Jul 2009 12:38:10 GMT

When we 1st started we were told to wear gloves & masks when mixing up the chemo drugs at home...we did for a while...then over time and after 150 doses or so...the process is now:

Shake a pill into the cap, drop in the mini mortar/pestal we use, crush, add cc of water to dissolve a bit, crush up in water to make smooth paste, add 3cc's cherry syrup, mix up, draw up in syringe, rinse off mortar pestal under hot water, put in dishwasher...

No gloves, no masks...am I being too carefree with my handling? The only time I really touch anything is when I'm rinsing off the mortar/pestal...I just figure that after it's been crushed and diluted with 4-5 cc's of liquid I'm only dealing with trace amounts of the meds ... any thoughts?

Thx,

AALL02p2 or Isolated CNS relapse

communityreply@lls.org — Fri, 01 May 2009 21:09:54 GMT

I would like to get in touch with someone who is on this protocol or another protocol for "Late relapse isolated to the CNS (csf).

Thanks, Ruth

Swine Flu at my older son's school :(

communityreply@lls.org — Thu, 15 Oct 2009 22:30:55 GMT

Hi all~

My son came home today with a note from the school saying there was a case of the swine flu at his school today. The student who was diagnosed with the swine flu is across the hall from my son. Needless to say I'm totally freaking out now about Evan. Evan has had his flu shot and so has my older son, Trevor, BUT it is still nerve racking to know he might have been exposed to the virus. Evan is in remission and has been in his maintenance phase for a year now, his counts are good and he gets his IVIG transfusion & IV antibiotic monthly. I called the NP to touch base with them to see what I should be doing. Anyone else had issues like this? Any advice would be great. Thanks~

Jennifer

LTM Advice?

communityreply@lls.org — Thu, 15 Oct 2009 15:47:12 GMT

Hi everyone!

Justin just began LTM yesterday (woo-hoo!) and we are super excited! However, I am feeling a little out of sorts after having so many restrictions for so long as to how to relax a little I guess?

Here are some of my questions for you all:

Do you allow all foods, even veges/sodas from fast food restaurants?

Do you allow your children to go to all public places?

What about sports like soccer -- do you allow with the port?

Thanks for any and all advice! I was just bragging about the expertise on this forum to our nurse at clinic yesterday!

Tonya

We are on hold with chemo again!

communityreply@lls.org — Thu, 27 Aug 2009 19:03:01 GMT

Yesterday we were for regular hiring test and I was sure that everything is ok but doc. said taht Phipil has a fluid in his left ear and his hiring is 30% down than right ear. He gave him antibiotic but I called to Philip's oncology doc. for ask if I can give it to him. The doc. said of course that I have to come to the clinic and they wiil see. So, we just came from clinic and doctors put the Philip on hold with chemo because his counts are low (WBC 0,80; ANC 200) They said that maybe is virus and if he got something probably he will have a fever. I worry a litlle bit about thais situation. Philip is 17 months on treatment and the end of April he was 2 weeks on hold. After 2 weeks his ANC was great but I knew that his ANC was low from chemo. I hope that now will be the same think.

Itches and pulling at panties...

communityreply@lls.org — Wed, 13 May 2009 17:25:42 GMT

I know that you guys have heard it all...so please don't be offended by the graphic nature of this question. My daughter 6 1/2 yrs old finished treatment for HR ALL in Dec. 2008. The one thing that seems to be constant, and driving us both nuts is the itching and general digging in the private area... This is something that was somewhat occuring during treatment, and I bring it up at clinic visits every month. It seems to be a 2 fold problem...1st of all, she seems to have some itching in her female parts. Sometimes they will be red and irritated, and other times looks perfectly healthy. While on treatment we really thought it could be a side effect of something, but now being off treatment for 4 months, I don't think that is the case. We have used over the counter topical treatments, which sometimes seems to help, but over all....she constantly has her hands either in her pants or pulling at her panties. *Interesting note* about 3 weeks ago we had to take her to the ER for a fever (she still has a port) and they gave her a IV antibiotic (just in case) well, for about a week afterwards, no itching, none. I made sure to bring this point up to her oncologist, who really didnt' know what to think of it, I question if it could be a fungus, he said the antibiotics wouldn't have cleared that up, so it's unlikely. As of about a week ago, the itching is back. Also, now lets add the booty 2nd issue). She is always "pulling her panties out of her butt" and I question her about it, she says she has a "wedgey"....even when she doesn't have panties on. I've bought a bigger size panty, no panties, I don't know what else to do. When I examine her, I ask her to point to exactly where it is bothering her, she points to her anus (the actual booty whole) and in the front, between her "girl lips" (sorry for the lack of terminology) Again, I see nothing. But it is becoming a BIG problem. She'll put on pants that fit her fine, are not ridding up in her butt, .....she's in tears because they don't "feel right".

Someone please have some kind of insight as to what could be going on. I don't think it's yeast, however maybe I should have that tested. Any ideas!????

Amy

www.caringbridge.org/visit/marisarosa

ALL and food queries....

communityreply@lls.org — Fri, 07 Aug 2009 01:24:20 GMT

Hi,

We are based in Singapore and my daughter is just recently diagnosed with ALL. The hospital has provided me with a list of food that she can and cannot eat eg, Yogurt, Raisins to be avoided etc..it is not too long a list but still. The dietician also says "no outside food"....but my question really is...I have been reading blogs and journals of parents whose kids have ALL and they seem to be able to eat just abt anything, McDonalds, Pizza Hut, fav restaurants etc etc..I dont feel there is any restriction on food. The hospitals approach here is that the hygienic conditions under which food has been cooked at an eat out or restaurant cant be controlled and what if there is any food contamination....that would be hard on our already immune-suppressed kids, is it worth it ? It would make life so much simpler if we could get the child his favourite meal every now and then in a hope to cheer them up and they'd surely eat something. Is it coz it is initial stages for my daughter? Any thoughts ? What do your hospitals, dieticians say abt diet in such kids ?

Thanx,

Lisa

How to live with leukemia?

communityreply@lls.org — Tue, 29 Sep 2009 13:40:10 GMT

My nearly 3 years old daughter was diagnosed with ALL B-cell leukemia almost two months ago. Now I would like to know what kind of advises you have got from the hospital concerning living with leukemia?

-We were told that we should not put our child to day care for next three years (treatment takes 2,5 years) because of the risk of infections. It is a long period to stay home but I will do it.

-It is not a laut take any baths or swim at all as long she is having the port (she will have the port two years)

-We can invite only one child each time to our home, two children at the same time is too risky (infections)

-Our child cannot use public transport or go to grocery for 2,5 years or any other public place

-All fruits must be peeled

-It is not recommended to let our daughter to play with sand

What kind of rules or recommendations have you received from your hospital? I am quite worrid how my child is going to copy mentally as she used to be very social little girl and now nearly everything is forbidden. We have lived isolated life, however our girl has already had three infections within two months. So scary!

2 Years OT!

djlawman@yahoo.com — Wed, 06 May 2009 15:58:47 GMT

Just wanted to let everyone know that Sam has been OT for two years now. He's doing great (except for the minor little unrelated pneumonia blip recently).

It's a long journey with our kids during treatment. But I wanted to send that news to give those of you on the journey hope that there can be an end to the seemingly endless years of treatment.

We made it through with a lot of help and support from many on this (actually, the old) board. So, I am paying it forward in every way we can.

Good luck to all of you on the journey. I hope your kids get cured, and your years are peaceful and full of life.

Doug

Heart murmur!

communityreply@lls.org — Wed, 23 Sep 2009 00:35:41 GMT

I was toady in my son's pediatritian office because Philip has a runny nose and cough, no fever. I would like to go with him just for listen him. I'm reallyworry because she told me that she heard some, very quiet murmu on his heart. On monday I will go with him for take a flu shot, so, I have to ask his doctors about echo again. He has done last one on november 2008. I was riding about murmur a lot, in most cases is not anything wrong. Any sugastions? Maybe somebody has the same problem?

Thanks

Marta

First infection ?'s

communityreply@lls.org — Fri, 05 Jun 2009 22:32:17 GMT

So after the great news of Ezra's blasts being so low, we awoke the next day to a fever. He is now in the PICU with a blood infection (can't remember the name). Anyway, it was all so scary and so fast. He got so ill, so quickly I thought I was losing him. Do your CK's always look like they are on deaths door when they get infections?

My mouth dropped when they told me we would be in the hospital 10-14 days, I had no idea.

This is so hard, I just want to see him smile or even sit up. I want my little boy back.

The good news is we will finish his induction in the hstp. which makes me feel safe, since his ANC is so low, at least he is being monitored. We have to wait to see if bacteria continues to grow on the cultures, if it does they have to remove his port and put in a new one. Has this happened to anyone else?

They said his vitals are going back up which is good, and they will probably be moving him out of the PICU soon. But 2 weeks in the hospital is awful, poor little man.

Any words of wisdom would greatly be appreciated. - Beth

Mouth sore!

communityreply@lls.org — Tue, 27 Oct 2009 04:09:00 GMT

If they always hurt? Philip has something on his lips. His onc.saw his mouth the last week and he said that is looks like sore but he doesn't complain. I use a lot of Nystatine but it's not works. One day he has a lot of them, another day his lips looks clear. Maybe somebody can say something?

Thanks

Marta

My child's school will be giving out FLUMIST to students

ginn@aol.com — Thu, 22 Oct 2009 00:37:05 GMT

We live in South Florida. They will be giving out the FLuMIST to the children whose parent's give authorization to do so. They are scheduled to give out the flu mist in my daughter's school this Friday. Olivia is in the 5th grade and in a year into LTM. She will have some classmates who will get the mist. When I asked our Oncologist about the mist. He recommended we keep Olivia home for 5 days. After reading the CDC website, I think 3 days would be enought. We do plan to keep her home from school Friday, and then she will be home sat & Sunday. Was just wondering if anyone else has a child in a school where their classmates got the flu mist vaccine in school setting and if so, how long did you keep your child home? IF any child exposed to someone who received the flumist became ill?

Thanks~Ginger

Have you ever seen poiklocytosis or anicytosis on blood work??

communityreply@lls.org — Thu, 14 May 2009 03:04:27 GMT

We are in the middle of DI. Lily received her 3rd dose of Dox today along with Vin and she started back on DEX. I got our blood results at clinic however we have online access to the results and I always like to look at night since they rerun stuff and often post updated results. Mind you they aren't ever different really, but I'm a little compulsive. So tonight they had posted on the smear that they found poiklocytosis +1 and anicytosis +1. Does anyone know what that means? I found that they are irregular red blood cells, but can't figure out if it is important or not or caused by chemo. I'm more curious then anything else. I assume if it was bad they would call. However it does make me more curious since I looked back and around diagnosis it notes that too. Just curious if anyone had seen this or knew more.

THanks Larisa

Need perspective: length of hospital stays for low ANC

communityreply@lls.org — Thu, 29 Oct 2009 00:48:34 GMT

Graham (pre-B ALL, dx 2/09, age16 now) was admitted a week ago Sunday for high temp, infection somewhere. He is at the tail end of DI and his ANC was 8 on admission. This is our only admission for this kind of thing. (I know we have been very fortunate!) Evidently, he was pretty bad at first but rebounded fairly quickly for the most part. He's been afebrile for about 8 days now; on day 11 of IV antibiotics. His platelets and HGB keep dropping, requiring various blood products about every other day. But the biggest problem is his ANC. They want it up near 500 before they will discharge him. He is feeling great, but for that elusive number! Even with daily Neupogen (never had that before, either), his ANC was at its highest of 239 on Sat, 178 on Sun, 174 on Mon then 49 on Tues! It rose modestly today to 85, so maybe we are on a good climb...Anyway, I just wondered what you've experienced as to how long it took to get these numbers up (length of hospital stay), what are your hospital's parameters, experience with Neupogen in similar circumstances, etc.. I would think he could recover at home where there are (theoretically, anyway) fewer, or at least less potent, germs than a hospital. We are going stir crazy at this point so just looking for a little input... Thank you again!

Promising new therapy

communityreply@lls.org — Thu, 30 Jul 2009 17:02:42 GMT

Hopefully this will work, unlike my last link failure! Sounds good, I just hope it works and becomes available very, very soon.

http://www.sciencedaily.com/releases/2009/07/090728123052.htm

Miralax

communityreply@lls.org — Wed, 23 Sep 2009 03:57:42 GMT

We are going from days of constipation to days of diarrhea. How do you titrate the Miralax to prevent this from happening? Are you giving Miralax on diarrhea days to prevent the coming constipation? I hate chemotherapy.

Thanks

Tube feeding

communityreply@lls.org — Sat, 20 Jun 2009 19:24:58 GMT

Hello,

Peter has just been given a naso-gastric tube. It's working out quite well. Our biggest problem so far is that it starts up and stops every minute and Pete is a very light sleeper. We were told to keep it above his head, by his bed. But it keeps waking him up when it starts up. Last night he must have woken up at least 8 times, and then we have to go and check on him as he could be tangled up in the tube.

Does any one have any suggestions that has used the pump?

Thanks,

Bridget

Twins and increased incidence of Leukemia

communityreply@lls.org — Thu, 21 May 2009 18:56:54 GMT

Possibly an odd question but one I've been curious about. Around town/the hospital we take our son Aidan too, I have heard several cases of one of two (or both) of a set of twins having been dx w/leukemia. Now I don't know if this is so coincidental or if I'm just more focused on it as Aidan is a twin (fraternal) but I just have found it weird. Of those I know/have heard about there have been a higher number that are a twin.

Of course I know my daugther (his twin sis) is at no higher risk of getting it (since it was not some genetic or chromosomal abnormality) it is still unsettling.

Has anyone seen anything that shows a higher incidence of leukemia in twins - or are there any other parents on this board that have a twin that has leukemia?

Thanks........

Remission!

communityreply@lls.org — Sun, 21 Jun 2009 23:08:44 GMT

Well even though we are still stuck in the hospital we did find out that Ezra's cancer is in deep remission! So we are thrilled and trying to look at the bigger picture than dwell on our lenghtly hospital stay. We hope to go home tomorrow, but are not getting our hopes up.

Also since going off the steroids my son is slowly returning to his former self...hooray!

need advice on feeding tube

vrontak65@aol.com — Thu, 21 May 2009 00:10:20 GMT

dakota has lost 12lbs in a month and may finaly get a feeding tube on friday.i know he needs this and it should help him but ive never been through this and im freaking out. hes been vomiting and not eating for about 2 weeks any advice? sandi

Neutropenic fevers?

communityreply@lls.org — Sun, 28 Jun 2009 18:57:34 GMT

So my husband just rushed Ezra off to the ER with a fever. Its hard to believe he can have any sort of infection since he is still on antibiotics at home for the pseudomonas. Ezra just started consolidation and 6mp on Thursday. I have read your other threads on 6mp and so I know some kids are sensitive to it, and that it can drop ANC's quickly. So I am hoping this is just a neutropenic fever, and was wondering what your experiences with those fevers are. Ezra seemed to be feeling fine, in great spirits, nothing like the last time he had a fever and had the pseudomonas. What is the standard hospital protocol for neutropenic fevers?

Ankle Pain

communityreply@lls.org — Wed, 06 May 2009 02:24:22 GMT

Elias is having that pesky joint pain r/t his Vincristine. It has been about 2 weeks since he had his last dose, and for some reason it seems to peak about now. He takes off his left shoe and sock from about two days after until 3 weeks after. He has some complaint of general pain in the area- very hard to nail him down on this. Today, he complained of pain to his left ankle- to the point that he really didn't want to walk on it.

Here is the question- during times of acute pain, how do you treat? He initially said that my warm hands felt good. I had an "aha" moment and got a hot pack for his foot. It wasn't long before he felt that was making it worse. During the height of receiving Vincristine, he would open the freezer door and put his feet on the bottom ledge (side by side, not a contortionist). Of course, there IS the Tylenol option. I just really want to use that sparingly. I am certain that giving him a dose will ensure that at that very moment his body would have spiked a fever and I have inadvertantly suppressed it.

OK- send your great ideas- love them!

Autonomic Neuropathy?

communityreply@lls.org — Wed, 24 Jun 2009 19:15:05 GMT

My son finished treatment for ALL almost 10 months ago. For the most part he's doing great. His counts are great and he has tons of energy. But . . . we have an ongoing problem with diarrhea. Looking back I can see that it all started about halfway through treatment when his usual pre-diagnosis constipation went away and slowly but surely his stools got looser and looser. Last spring I was almost out of my mind dealing with liquid diarrhea. Other than discovering that he was lactose intolerance, the GI specialist was stumped. In desperation we took him off of gluten and he's been on a gluten/dairy free diet for over a year. In the beginning it seemed to help a lot, but over time the diarrhea has continued to get bad again. After a major poop blow out and a 45 minute clean-up on Sunday morning (and that was just cleaning the floor and chair--my husband cleaned up my son), I had a good long cry. I feel like we're back at square one. We have an appointment with GI on July 1, but I really don't think they're going to be able to tell me anything.

So, on to the subject of my post. Yesterday my son had ear tubes placed. While speaking to the anesthesiologist before surgery, I mentioned the GI issues and warned him that my son could have a blow out during surgery. I also told him that he was already on a gluten/dairy free diet so I wasn't sure what to do next. He told me that twice in his career he's seen children who are cancer survivors with autonomic nerve damage to the intestines leading to chronic diarrhea. I guess there's some test that can be done on the nerves of the GI tract. My son has bad peripheral neuropathy in his feet and ankles (which was very obvious yesterday since I let him go to the hospital in his sandals without his orthotics and he fell several times because he can't pick his feet up properly). I've done a ton of reading in the last 24 hours but there isn't a lot out there dealing with this issue specifically. Vincristine does cause peripheral neuropathy and most of us have seen it in the severe leg, jaw and other pain, but it usually resolves. (The peripheral neuropathy my son has in his legs and feet is supposed to have resolved by now.) The constipation many of our kids experience after Vinc is a form of autonomic neuropathy because the nerves in the intestines temporarily shut down. Sometimes this can lead to diarrhea instead of constipation. And very rarely the nerve damage is permanent. This is sooooo not what I want for my son. This is a huge quality of life issue. I had another good cry yesterday, which could just be due to hormones since I'm almost 7 months pregnant! The anesthesiologist recommended going to the Mayo Clinic which I had already decided we should probably pursue. Time to get on the phone to see if I can get that set up.

Thanks for listening.

Low dose 6MP after low ANC

communityreply@lls.org — Tue, 15 Sep 2009 19:02:55 GMT

My 6 year old daughter has ALL and was flying through LTM without problems. They had even increased her Methotrexate and 6MP to 125% for high counts. Then in July she got Hand, Foot & Mouth disease, which knocked her ANC under 500 for 3 weeks. She was off the 6MP and Methotrexate for the entire 3 weeks. Now they are telling me we have to start at 50% of Methotrexate and 6MP, and increase one by 25% each month. Thus it is going to take 4 months to get back to 100% dosing. Is this similar to what you have seen after a low ANC? It seems like a very long time to go to get back to 100%.

NG feeding tube expereinces...

communityreply@lls.org — Wed, 21 Oct 2009 20:14:00 GMT

My 3yr old has lost some weight and the Dr is wanting to try an NG tube for him. I should say, that he was diagnosed the day after he turned 1yr and has struggled to gain weight... he is currently not on the growth chart although he has increased in height over the last 2yrs. The chemo makes him have no appetite or he's only willing to eat very little...
We're not "big/tall" people to begin with and I'm wondering if, yet another intervention, will be helpful or will it add to his misery...

Any thoughts or experiences would be helpful...
~Nicole

son was diagnosed at 11 mos

communityreply@lls.org — Thu, 16 Apr 2009 01:40:30 GMT

My son was diagnosed at 11 mos with ALL T cell with characteristics of AML he was recieving chemo and we had one more month before we were to go into the maintenance part. Yesterday we found out he has relapsed and they have done a bone marrow test to see what we are looking at and would like for the family to get tested to see if any of us are a match for stem cell we are really worried and would like to hear other stories of anything that will guide us through what we are experiencing we thought we had it beat then it comes back.

anyone see a pink ribbon on their yahoo homepage today?

communityreply@lls.org — Thu, 01 Oct 2009 12:55:39 GMT

The first day of October and I see one right beside the "yahoo" on my homepage. That's great for breast cancer awareness!!! But......where's our gold ribbon all of last month? I know we as parents need to do what we can to get out there for our kids disease awareness and I'm sure we all do our part but c'mon.....is it really THAT much of an unknown? Is it really THAT hard to put a gold ribbon up? There is a very small chance I could've missed seeing a gold ribbon but I doubt it. I'm on my yahoo mail every day. I know I'm preaching to the choir on this.....just frustrating.

When should your child get the flu shot?

communityreply@lls.org — Tue, 06 Oct 2009 19:23:54 GMT

They were giving them out at the clinic yesterday but my daugheter had a temp off 99.9 so they decided to hold off. Next time we go in, she will be starting steroids. I remember reading somewhere that you shouldn't get it while on steroids. Is that correct? This is her third year on chemotherapy. The first year she was in consolidation and didn't get one and last year she got one while on Maintenance. My son got the flu twice last year and also had the flu shot, not sure how effective it is! Regardless, the rest of the family will get one too.

Sudden drop in WBC during LTM

communityreply@lls.org — Mon, 13 Jul 2009 15:45:56 GMT

Hi,

It has been some time since I posted comments or questions on this site. Stuti has been in LTM since Dec'08. Her counts have kept up pretty good except for a brief period in April when she was fighting viral infection. However, she got her blood work done yesterday and her WBC was 1.6 (with ANC around 1300). About a month ago her WBC was 5.xxx (in our clinic the blood work is done every four weeks). She has not shown any signs of viral infection this time. Is this a cause for worry? Is this normal? Our oncologist in India (the family has been vacationing there trying to get some desperately needed break) has asked us to hold of MTX (to be given every Monday) for another couple days and asked for a blood work done then. This is obviously driving my wife nuts, so any support or information would be helpful. We would be calling our oncology clinic in US pretty soon.

Thanks,

Puneet

(a bravegirl's father)

Counts O/T?

communityreply@lls.org — Fri, 26 Jun 2009 20:24:53 GMT

Hello! Our son is now one month and a half O/T and just went for his monthly labs. All looks good, everything in normal range (ANC still in low end of normal). I was just wondering how your child's counts looked for the first few months O/T - specifically, did they "jump" right up? Did they take some time? If you can share the pattern, I'd really appreciate it! Thanks!

increasing methotrexate?

communityreply@lls.org — Mon, 02 Nov 2009 00:48:53 GMT

We were in on Wednesday for our regular clinic visit, including vincristine and started our 5 day steroid pulse. Both Micah and Seth have had higher ANC's than they normally do. Micah's was only 1700 or so, but Seth's was over 3,000 for the second month in a row. So they uped the boys' mtx by two extra tabs each Wednesday evening. Has anyone else had this happen in their treatments schedules? I didn't know an ANC of 1600 was really that high, but I guess it is higher than they like it to be. Earlier this summer in July, they both had a really high ANC at one point (like 6,000 or 9,000). At the beginning of 2009, they were both switched from bactrim 3 days a week, to once daily dapsone. They were switched because they had both struggled with low ANC all the time. We would be at 50% or 75% a good portion of the time. Now, 100% doesn't seem to be doing it's job, so that has me a bit concerned. Just wondering if any of you have had this going on.... We have been in LTM since Feb. 2008, and have about 1 year left of LTM.

diminishing appetite off treatment

communityreply@lls.org — Thu, 30 Apr 2009 13:14:46 GMT

Scott (age 12, t-cellALL) has been O/T for two weeks and his appetite is getting worse every day. Yesterday all he ate was a few crisps (chips) and a yoghurt! Just wondered if anyone else has experienced this with their child and how long did it take for them to start eating again. Thanks.

1 year of remission for my boy!

communityreply@lls.org — Fri, 18 Sep 2009 18:00:05 GMT

I just wanted to share the good news. When I first came to these boards, Reese was not yet diagnosed, but had an enlarged lymph node in his neck for months. It was quite a mystery at the time, he was otherwise without symptoms, looked fine, was playing soccer and the thought that it could be something as scary as cancer was just not real to me. He was 5 years old at the time. Cancer, if we thought about it at all, was something that I thought could only happen to me or his dad, never to my child. But, as all of us here know, it does happen to children, our children. Reese was diagnosed with a rare form of Hodgkin's Lymphoma at a very young age. He did chemo (it's strong, but much shorter than for leukemia), was spared radiation and was in remission within 4 months. He has now been in remission 1 full year, based on his scans this week.

Life is different after your child has had cancer. But, strangely it is better in many ways. I know I have more compassion and strength and love for life. Reese is so resilient, as most of these young cancer warriors are, it's just amazing and inspires me every day. There is a lot of hope for our kids, most of them will recover completely. One day in the not too distant future, you will be out there in the world with your child, they will be playing sports, or riding horses, or going to school, and you will think to yourself, "no one even knows what this child has been through to be here today doing "normal" stuff again, except us." God Bless you all on this journey, may you arrive at your end-of-treatment destinations as safely as possible.

Chemo affecting teeth

communityreply@lls.org — Thu, 08 Oct 2009 16:12:18 GMT

Madelyn is almost 6 and has been on chemo for a little over a year. She went to the dentist yesterday and has 3 cavities in her new molars coming in. The dentist said that the chemo weakens the enamel and aside from having her drink water with fluoride in it there isn't much we can do. Has anybody experienced this and is there anything else we can do? Thanks,

Mary

Niko & Ruth

communityreply@lls.org — Fri, 19 Jun 2009 03:12:17 GMT

Does anyone know how Niko is doing since his relapse? I know he reached remission already, which is great! I'm just curious how he is doing now and how Ruth is holding up. Ruth, if you reading this you and Niko are always in my prayers!

Jennifer

Dry Mouth

communityreply@lls.org — Tue, 28 Apr 2009 12:04:37 GMT

Elias has had several side effects this round of chemo, but we have not heard of dry mouth b/f. He has been complaining quite a bit about feeling dry. Anyone else?

Funny smell and unclear urine.

communityreply@lls.org — Tue, 11 Aug 2009 19:45:14 GMT

London went to the clinic yesterday because she was in a lot of pain. They gave her a bag of fluids and some morphine and sent her home with tylenol with coedine. London has a dark yellow urine and a weird smell. She seems to be having pain from her hip area and just be overall uncomfortable. I have called with all these symptoms and they have told me the smell is normal and to just keep her fluids up but, she has been having a lot of fluids. What is normal?

Calling all ALLR17 parents

communityreply@lls.org — Tue, 20 Oct 2009 15:46:28 GMT

My daughter has recently relapsed and is currently in the middle of Block B induction therapy. I am interested in learning of similar parents who are participating in the St. Jude ALLR17 protocol. Would love to compare progress, notes, information, concerns etc.

Fewer Vincristine side effects this time!!

communityreply@lls.org — Wed, 15 Apr 2009 23:31:46 GMT

I'm soooo afraid to jinx it but I think it's fair to say that Emma has had fewer Vinc side effects this time around. She had her second dose of IV chemo halfway through Reinduction II on Monday (that's our second phase of what you call DI). Here's what has been done differently:

1. Doubled Gabapentin dosage from 1.5 ml 3Xday to 3ml 3Xday.

2. Gave Gabapentin for seven days prior to Vinc, as opposed to the typical three days. We didn't mean to, but her Vinc was postponed for four days unexpectedly.

3. The chemo 'bomb' was different this time. She had high-dose Ara-C (Cytarabine) in addition to the typical PEG-asparaginase and Vinc she typically would receive. I have no idea why this would help anything, but thought it worth noting because it's definitely a departure from the norm.

Y'all, by Day 3 (which is today), she'd be incredibly cranky, complaining of her 'sides' (hips)/mouth (jaw)/throat (jaw?) hurting. She would refuse to walk for the most part, would be totally inconsolable at times, would certainly not be standing at the coffee table playing right now, etc. I'd be giving her codeine every 4 hours and morphine for breakthrough pain from morning til night. She has not had a pain pill all day.

I just thought this might be helpful for some of you who struggle with Vinc side effects. Please feel free to follow her site if you want to see how it goes for the rest of the week. Her side effects typically kicked in full force on/by Day 3 after chemo and didn't abate until at least Day 6. So I'll be blogging that to keep track of it for future references.

www.caringbridge.org/visit/emmagracebrown

normal blast counts

communityreply@lls.org — Sat, 08 Aug 2009 03:19:14 GMT

My daughter is 22 months old with Pre-B ALL her Blast percentage was 60% and then 52%, and now 10%. She was diagnosed July 22 and started treatment on the 24th.what is normal for this stage?

Low counts on Dex?

communityreply@lls.org — Mon, 20 Jul 2009 19:43:51 GMT

Emma's counts always soar when she's on Dex. It's the only time we see anything over 1,500, usually. So this one threw us for a loop. She's been off 6MP for about 2 weeks (since her counts the last time and they put her on the other antibiotic instead of Septra). Had Vinc/LPIT/started Dex exactly a week ago with an ANC of 1400. It dropped to 1300 on Thursday (Day 4 of Dex) and then to 1000 today.

I really was anticipating them being super high between being off Septra and on Dex. Am I missing something??

PS - she started 6MP again today, so cross your fingers her ANC doesn't do a nosedive again!

Reactions

communityreply@lls.org — Thu, 11 Jun 2009 13:20:14 GMT

OK, maybe I am venting but I am wondering if I am the only one out there?? Yesterday I was told by my neighbor that people are talking about my family. We had a pancake breakfast fundraiser this past weekend. It was an OK turnout, but not what we thoguht it would be. (I also know economic times are tough). My neighbor told me yesterday that people are saying we don't need any help, basically because they see us driving a nice car, bought a new dishwasher, went to Mexico (visit family not on a beach). People are looking at every little thing we do under a microscope. I feel like I can't say or do anything! Like wow, becaue my child has cancer I am suppossed to wear rags and be poor... The dishwasher broke , so we replaced it. We went to visit family in Mexico, no hotel, free food. Can we not coninue living because my son has cancer? Just wondering if anyone has had similiar situation? I feel so broken and hurt by our community doing this. Like it isn't bad enough...

Teresa

Emilio's mom, age 5, pre-B ALL

Plainfield, IL

What keeps me up at nights...

communityreply@lls.org — Sat, 18 Jul 2009 03:43:59 GMT

This is my first real post on this board though I read them pretty religiously and have responded to others posts before. My 7 year old son Dylan was diagnosed with high risk (due to high MRD and CNS involvement) pre-B ALL on December 1, 2008 and is currently in the first half of his first round of augmented Delayed Intensification. On his protocol, he will be repeating Interim Maintenance and Delayed Intensification again before moving on to LTM. He has had some major delays not only between courses of chemo but at the half-way points as well due to low counts. Usually he is anywhere from 3 to 6 weeks delayed. His ANC has only been "normal"/over 1000 a mere 4 times in the last 7 1/2 months. He has needed so many platelet and blood transfusions that I lost count a very long time ago. He has had a lot of side effects from the chemo, I won't even go into that because its just too much, but the most recent of these has been severe and acute pain in the knees and hips/lower back. They first blamed it on the Vincristine since he has had problems with the neuropathy all along. Well, its been two weeks since getting the Vincristine so they no longer suspect that. Then they suspected it was the steroids maybe were causing osteonecrosis, but his MRI looks ok so far (still awaiting final word on that as it was just done last night). Dylan is currently in the hospital for a neutropenic fever (ANC was zero) that is not coming down very much even with Tylenol and IV fluids. No obvious cause and the cultures are still coming back negative.

The last time Dylan had high fevers that didn't respond to Tylenol and severe joint pain was at diagnosis. I am, like many of you I am sure, constantly worried about relapse and particularly so since he is high risk, he's had so many long delays and has such a hard time with count recovery. So, instead of just asking the Dr. like I know I should, I lay awake at night worrying myself sick. I am probably worrying over nothing but it just doesn't seem to matter how many times I tell myself that. The logical part of my mind knows that with all the bloodwork being done on him while he's here in the hospital if there was the slightest concern that this indicated a relapse, they would be doing a BMB immediately, but its not just "right now" I am so scared of. What do all these delays and issues add up to over the long term? At the end of induction, he was given a 45% chance of EFS. Is that number still accurate given all the complications he's had? I was encouraged by another mom that posts here to start posting my issues and questions as well, so here I am. Thanks for reading and for any thoughts you might want to share.

~Chrissy

www.caringbridge.org/visit/dylankinsey

Not losing baby teeth?

communityreply@lls.org — Wed, 29 Apr 2009 12:41:30 GMT

Our Daniel was dx in Feb 2007 at age 3 1/2. He is now about to turn 6, and still has not lost any baby teeth.

I'm wondering if this is typical for kids undergoing chemo - I have read lots of posts about physical growth being delayed during treatment, then catching up in a big leap once kids are OT. Is the same true for dental growth?

Just curious about the experiences of others - that's what I often find most useful about this board, when you have a question that does not necessarily require a medical consultation/explanation, but knowing what others have experienced/do about it can often be very helpful.

Thanks!

Marlene

Having infections all the time

communityreply@lls.org — Sun, 11 Oct 2009 09:35:19 GMT

My daughter was diagnosed with low risk ALL in the beginning of August. The induction period went well but after that she has been hospitalized three times because of virus infection with fever. They have given her IV antibiotics to prevent that she has not got any bacterias. Her ANC has always dropped to zero after chemos. I am starting to be quite worried if this trend continues I do not understand how we will be able to go through consolidation and delayed intensification. Has anyone else experienced so many infections?

Our onc said that she is very sensitive for chemos as her ANC drops to zero every time. However he said that this is also a good sign because it means that the chemos are having excellent response. Now he has a plan to diminish the amounts of chemos so that her ANC will not always go to zero. He said that it does not matter how much chemos she is taking that the crucial thing is that they have certain target levels where they want to keep her WBC count. If these levels can be reached with less chemo the outcome is same. So what I am trying to say is that according to the onc our daughter needs less chemos than a standard case as her body reacts so well. Has anyone else experienced this or does this sound even logical? I am just worried that she is not going to have enough chemos in the future. I am sorry that English is not my mother tongue but hopefully you can understand my point.

HEADACHES

vrontak65@aol.com — Mon, 17 Aug 2009 22:12:03 GMT

DOES ANYONE HAVE ANY SECRETS FOR GETTING RID OF SPINAL HEADACHES??? MY SON HAS BEEN DOWN FOR OVER 2 WEEKS. ANY HELP PLEASE!!!!THANKS SANDI

Port placement??

communityreply@lls.org — Thu, 18 Jun 2009 22:56:11 GMT

Emma is scheduled to get her port tomorrow morning. YAY! But I'm confused about what the surgeons said about the placement. Her central line is right smack in the middle of her chest - right in between her nipples. They said they try to use the same incision and vein, so if all goes as planned, her port will be in the middle of her chest. Which sounds weird to me because I thought they always go to the side and up toward the shoulder? For some reason I thought it had to be in a fleshy area.

Where is your kid's port??

OT rashes, aches and pains of all kinds!

communityreply@lls.org — Fri, 17 Apr 2009 01:50:55 GMT

I am a newbie to the land of Off Treatment. It's been about a month and I'm really in the dark about what to expect. I know a little, but really getting through the chemotherapy treatment one phase at a time was what I did for so long. I barely read up on what to expect afterwards.

Would you share your OT experiences?

I feel silly asking for reassurement on a subject that has been written about many times over on the LLS boards. Onviously not silly enough to stop myself though! My daughter recently went through some leg/foot pain and then it dissaapeared. I'm assuming it was a common OT thing. Now she has these little bumps all over her torso, both front and back. They aren't red, they don't itch...but they sure are weird! I'm assuming it's normal for OT kids to process out the chemo this way, but it would make me feel better to get some solid stories of the been there, done that variety.

So, any and all OT stories would be greatly appreciated!