You have come to the right place. My son was diagnosed with pre-B ALL exactly three years ago. He is doing well in the last few months of treatment. In fact, we go to the clinic today for his monthly visit.
I was pretty much in shock for the first month. He was in hospital during this long weekend, waiting for the port to be put in his chest.
I'm so sorry, I know your fear. It is unlike anything I've ever experienced, but I know that you will find the strength for your son. There is so much hope these days. The road is long but you can do this. You can come here to vent. It makes me feel less lonely. We aren't doctors, we're just other parents, but the information is still very valuable. We ask each other questions like "did you ever see....?" "what did you do when....?" and nothing is silly or embarassing - I remember seeing a post where a worried mom vividly described her child's symptoms including the poop floating in the potty and then apologized for giving "too much information" but I thought, that's good to know! Who else cares about that sort of thing? We do.
Your family is in my prayers
Welcome to the group. I am very very sorry that you have to be here though. Do you know any specifics yet? How is he doing? This whole process is definitely very overwhelming and scary, but believe it or not, parts of it do get easier. We are almost seven months in, and I still remember the beginning like it was yesterday, we had no idea what to expect or what life would be like. We are hanging in there though. Best of luck to your son and your family. Please come here anytime !
Mom to Daniel 3 (dx pre B ALL 12/15/10) and Dylan 6
Being scared sounds about right. Shocked. It ishard to wrap my brain around it yet sometimes and we're 10 months into treatment. We're "that family" the one with the cancer kid.
You found a great place here, we all totally get it. I promise you'll wrap your brain around things...it is astounding what a person can get used to. Hang on!! and welcome.
June 30th 2009 was the first visit our daughter had with the hematology/oncology pediatricians. It took about a week before we knew what she had (t-cell leukemia). Yes, we were scared and shocked. It is now two years later. She is still getting treatment, but is doing fine as part of the maintainance phase. We hope we can help you and your son with info, support, and our stories of getting our kids through it.~ Cheryl
I'm so sorry that your family is going through this, but you have found a great place for information and support. It's scary, but there are lots of other parents and caregivers here who are on the same road with you, and many who are ahead of you on this journey to keep you going. There are a few good threads with information for parents new to this, if you go back a page or two.
Bridget was 3years and 4 months when diagnosed Pre B ALL. Now she is 5yrs old and we are 4 months from finishing treatment. She is doing well. The beginning is rough, but things will get better. Come to these boards often and ask questions. Here you will find much support. I learned more about the protocols and blood counts here on this board than at the clinic. We have great doc and nurses, but for some reason the many questions would come to me at night or after we left the clinic.
My prayers for your son and your family.
Find support in your family and friends. When Bridget was first diagnosed, a friend said to me " This is your time to Lean, so lean hard"
I am sad to say welcome, but you have found an amazing board. My son was DX at 4 yrs old with pre-b all as well. He is now 6 and half way through LTM. just try to remember to keep a pen and pad handy and ask ask ask. The dr's don't mind even if you ask the same question 5 times. This is all so hard to take in at the beginning, but it will get alittle easier to handle as time goes on. Just stay strong for your son. In the end of all of this your son will be clean and clear of his luekemia. he will grow to be an amazing man. this board has helped me through alot of hard times, just reading other parents posts knowing im not alone. im praying for your son . sue
I am so sorry you are going through this. Right now, your entire world had been turned upside down and you will be feeling emotions that most parents will never (thankfully) fully understand. You are not alone and I hope you come to this board regularly as it really helps...and you will find good, supportive friends. No words will truly calm you now, you will find a way to move into your new normal as time goes on. I hope and pray you find the support and help you need quickly.
Hugs to you adn your family,
(go to the first posts to read about my experience with where you are now on your journey - and link to the other blogs which have helped me understand things as I have gone along)
So sorry you had to find your way to this board. Receiving a leukemia diagnosis is scary, overwhelming and gut wrenching. At the beginning there is so much to digest and so many emotions. You will be amazed at how the blood counts and meds start to make sense and become second nature.
My daughter was diagnosed with high risk Pre B ALL on 7/30/10 and today other than her extremely short hair you wouldn't know she has any kind of medical condition going on. We had our really scary moments and minutes that felt like hours; hours that felt like days and times that I wondered if it was worth it to put her through so much. The first month was particularly rough for us as far as how bad she felt.
This board is a great resource, but it can also be frightening to read about the complications and side effects. Just remember that not all kids experience all the side effects and experiences vary greatly from child to child. Wishing you as easy of a journey as is possible through treatment.
Robbie and Lauren (almost 13 and in long term maintenance since 4/15/11)
Welcome...although it breaks my heart to see more parents have to join. My son Gavin was diagnosed with T-Cell ALL on March 15. I totally understand the way you are feeling as those initial feelings of fear and shock are still very raw. People would continually tell me it would get better, and I thought they were crazy (they even made me a little mad). But once we were able to get through the very trying induction phase and clear the haze of uncertainty, we are adjusting well. Gavin is doing well and outside of some adjustments to our lifestyle and scheduling, things are relatively normal. I pray that all our kids have as smooth of a journey as possible.
I am so sorry you had to join us, but there is so much support and caring here among those who "get it" that you likely won't find anywhere else. When our daughter was diagnosed (pre-B ALL) on 5/15/08 we thought the world was ending for the first few days or so, but we got through it and you will too. There are no silly questions here, so ask away.
My son was also diagnosed with b cell ALL at three. He was diagnosed on December 28, 2010. The first month was the most difficult for us. My son had a difficult time with the steroids and quit walking. He is now ready to begin long term maintence and is doing very well. Best wishes to you and your little man.
All I can recall from the first week after my daughter's diagnosis (at age 6 in August 2009) is the sheer terror of the word cancer. And taking a shower in the family shower room at the hospital so I could sob without scaring Emma. And being completely overwhelmed by the new and terrifying world (nothing brave about this one!) that was now ours. There's a sharp learning curve in those first few weeks--get someone to help you take in or take notes on all the new information. And ask about support in your son's hospital and in your local area--there's a world of wonderful support out there that I wish you didn't need, but I'm glad it's there for you.
Wow.. Thank you all for making this nightmare a little better. Enzo is in Day 10 at the hospital in Orlando, and day 6 of cimotherophy. Its so hard right now because its not that we can see anything wrong with our little boy ( other then him being week ) its not like a broken leg or arm ..I don't know what to do other then holf him and his mother and try not to cry . I read and read and read some more looking to make sure he has the best odds.I cant lose my son I have to make sure that he is going to be ok. Does anyone recomend a good book to read. Please keep praying for little Enzo and thank you all for your notes I have prayed for all your little girls and boys and we all will have healthy kids again.
I remember the first few weeks were the worst, just trying to get my head around the whole situation was overwhelming, I felt like I was walking on clouds and my head was in a spin. As the weeks months go by we learn to become accustomed to what we've been dealt, it's no easy task but remain determined to get your child & your family through this journey as best you can. To be armed with information is to be prepared for whatever is thrown your way, it can also avoid unwanted complications if you are aware of certain strategies, you will gain much information being a member of this community.
All the best
Hi, my son Daniel was diagnosed on June 8 and we just finished induction, with great results. I remember thinking the same thing "when will day 29 get here", and now here we are starting Consolidation, it felt like the longest month of our lives. Keep reading up on ALL it feels good to not have the Dr. know everything If you need to talk you can message me.
day 19 .. he seems so tired all the time . this kid was none stop from morning to night. It would take me or his mother 1 hour to get him to sleep and now he puts him self to bed and naps one or two times a day.. also he is cold some times, he would never even sleep with a cover now he ask for a blanket or cover all the time.. would love feed back . did call dr already and he said his levels were moving up on their own so he is happy with everything.My wife will be bringing him back on friday for clinic...
Just wanted to say again that I'm sorry that you'll have to be here on this list. Also wanted to let you know that my son was the exact same way in the beginning. He was 2 1/2 when diagnosed and would sleep on and off throughout the day. He would ask to go to bed a lot and pretty much just wanted to lay down. We figured out that this was due to the steroids. Our Dr. said that the steroids can make some kids almost depressed...they get very tired and lethargic. It does get a lot better tho! My son also stopped walking during Induction. During the middle part of front line treatment though he was back to running around and playing like he did before! He did a total 180 and slept way less and didn't want to nap at all.
Hopefully after your son gets through this month long steroid pulse his energy level will get much better and he will be running around and playing like before!
I've also heard that the lower hemoglobin our kids have can also make them chilly...not sure if that is true but just a thought!
Mom to Daniel 3 (dx 12/15/10 pre B ALL) and Dylan 6
Just more reassurance. My son would nap and didn't want to play or laugh and was sometimes cold. He was 3.5 at diagnosis. I think it's normal, also. It is SO HARD to see your child act so unlike themselves. Heartbreaking. But it seems typical. You will get through it. One. day. at. a. time.
Hang in there. After the first month, there is usually a short time for the docs to review the labs, bone marrow biopsies, etc. for the first chapter. It can be hard waiting to find out what might happen next. And it is just really hard to see how your child is affected by the drugs.
It can be useful to write down what you are noticing about what your child is doing. For some symptoms & side effects, they can help. But it's really easy to be so distracted that the info you try to pass along to the docs is a little scattered (or maybe that was just me.....)
Our 2 year old daughter was diagnosed 6/26/11 with pre-b ALL as well. We finished induction yesterday. The first two weeks were hell, but this entire last week we have our feet under us strong as ever and watched our little girl gain that beautiful smile back. Ready for start of consolidation. Grateful to find this board and share stories - you all are amzing people.
Just joined up ourselves. Shitty place to be, but glad that we have found a place to meet other parents.
We are on Day 12 of induction, counting down the minutes until Day 29. We are still waiting on our cytogenetics too. Fingers crossed.
How did Enzo do on Day 29?
Family and Friends, We want to thank you all once again for all your love and support over the past 5 weeks. Enzo is taking the chemo like a champ and all of you would be so proud of him. We will be going back friday to speak with the doctors about our next phase and he will be getting chemo and a spinal tap, so another big day. We used to look forward to fridays, but not so much anymore! We received the wonderful news that Enzo has passed the induction stage (first 28 days) and can move onto consolidation therapy, this phase will last approximately 8 months and is the most intense once out of all the phases. Unlike most cancers once you are in remission things slow down and a person is usually finishing up treatment however, leukemia works backwards once you are in remission you can start several phases over 3 years to ensure all the leukemia is gone. I found a paragraph online that helped me understand remission and leukemia and just how important all these next phases are for him: When a patient is diagnosed with ALL, he or she may have 100 billion leukemia cells in their body. Induction therapy should destroy at least 99% of these cells, the patient is then in remission. However, that could still leave 100 million leukemia cells in the body. If these cells are not destroyed, they can grow and multiply and cause a relapse of the disease, this is why the next phases are so important. We also wanted to thank everyone who has donated to the Leukemia/lymphoma society walk in October, our two teams have raised over $1500.00 dollars already and we still have over 2 months to raise money for this great cause. WAY TO GO! Please keep the prayers coming and positive thoughts for our little man! All Our Love, Elaine and Vinnie Larissa and Enzo too
There is a great site called "Caringbridge" it's ideally set up so those with serious illness can gain support and keep family & friends up to date with their journey, you may already know about it. We personally didn't have our own caringbridge pages as by the time I found out about it we were nearly done with treatment, but it is well worth doing, it's like a journal, family & friends can visit comment and sign the guestbook, you can also keep a picture journal of your journey....it's great, I highly recommend creating your site, all your family and friends need is your site name and all the information you add is right there at their finger tips easily keeping in touch with whats happening during this tough time.
So wish I knew about it
You can create your site here, it's easy
DAY 41/1825 ( 5 YEARS ) TILL I CAN BREATH AGAIN........
We just got done with Induction... So far so good.. Sat down with all the Dr's yesterday with my wife and went over the next 8 months.. Wow. I guess that is all I can say. This is just so much for a little boy but I guess we have no choice. Enzo would not go to sleep last night so we just watched TV and he laid on me like he did when he was a baby. When do you get over the feeling that you will lose you kid ? how do you stop having the thought in you head? I know he is going to be ok because he has no choice. I look at my wife and she is so strong. I know we both want to be strong for each other but I am the 6'1 250 pound guy why am i such a ..... I guess god has a plan.. I hope everyone else kids are doing well. God bless you all ttyl.
Congratulations on making it through induction!!! That's a huge step. Lauren was diagnosed 7/30/10 and is almost 4 months into LTM; and for us induction and the beginning of consolidation were probably the worst part. She seemed to start feeling better and having fewer side effects once she was a couple weeks into consolidation. But every child has their own unique way of going through treatment. She still had some hospitalizations and missed most of the school year, but she wasn't miserable like when chemo first started.
As far as getting over the fear of losing your child: I'm not sure that ever goes away. It took me about 6 weeks after diagnosis before I could really sleep soundly and wake up without my first thought being "Lauren has cancer and I don't know how long she will live." It's like having a nightmare that is reality when you wake up. BUT, as you go along and see Enzo fighting so hard and having good days you will most likely will start to feel more confident. The feeling still sneaks up on me, especially at night or when I'm in the shower. But it makes me appreciate both my daughters, my husband, my 3 step children and my grandson even more. I think there will always be fear in the back of our minds, but the trick is to not let it dominate every day and enjoy the good days! I cry at random happy times too and I probably hug Lauren too much. LOL, is that possible??
I remember so well seeing the protocol and looking at a calendar and flipping, flipping, flipping the pages to try to find the end of the frontline treatment. I was so overwhelmed! I thought "how can we do this? It's just too much!" But we do and we did. We just finished the frontline treatment and start LTM as soon as we make counts. It's one day at a time, one foot in front of the other, slowly, little steps and they add up over time. We still have a long ways to go - our LTM is scheduled to be done in April of 2013 - but I feel like we'll get there the same way we got here, one step at a time. Even though it is very big, you and your family really can do this. Your son joins many other children in my heartfelt prayers.
Lauren didn't want to eat much during induction, even though she was on steroids. That was really weird, because grocery shopping, helping me cook and most of all eating are her passions. She lost weight during induction, but went back to eating normally a week or so into consolidation. BUT, I know I've read plenty of posts on here about kids not wanting to eat, and while she was inpatient in the very beginning the dietitian talked to us about how to get calories into your child when they don't want to eat; gave us a booklet, etc. We were expecting her appetite to diminish all through chemo, but it didn't. That said, I think she was rather unusual in continuing to eat. Not to scare you, but I've known other kiddos at our clinic who need to go on feeding tubes, etc. Hopefully it's something that passes, but your oncology team and a dietitian should be able to help. A dietitian should have some creative ideas.
Lauren didn't have issues with sleep, either but again I know I've read about sleep issues on here and have known kiddos that go to our clinic that have sleep issues. I think it usually coincides with steroids. I've talked to adult friends who are cancer survivors and one told me when he was on steroids it was nearly impossible to sleep. Another friend told me that after she had vincrisitne she had no desire to eat for days. It affects everyone differently.
I hope you get some answers and will keep you in our prayers. This journey seems like it brings a new issue on a regular basis. Just when you get one resolved another one pops up; but you get better at it as you go along! Then, before you know it you're in maintenance!
Problems with appetite are very common. Do a search on 'ng tube' and browse through the results. I wish I had done that before we went through the weight loss period.
What you'll find is that a number of people had experiences similar to yours. Nutrition is important to feeling well and starving your way through the treatment is not the way to go. Don't wait until it gets critical before taking action. Many of us have been there before you, don't wait.
We've experienced problems with sleep due to steroids. Don't know what to do about it, just that it coincides with steroid pulses.
Best wishes, stay strong!
9/12/2011 Enzo has been doing a little better today he went in for his...Swimming we are looking into moving into a home with a pool so Enzo will be able to swim.What are everyones thoughts with pools that have chlorine? a salt water pool would be ideal, but we can not find one with that criteria. Does anyone allow their young children to swim while in the mist of recieving chemo treatments?
We went to a water park after checking that the water was indeed chlorinated. ANC was around 1000 and we were in between HDMTX rounds. That was a great day ;-)
Btw, we are looking to get him back to swimming a bit (chlorinated pool), but winter is coming and he may not like the chill when being out of the pool.
Our oncologists said swimming in a private pool (no public venues) was fine so long as no one else in the pool was young enough to be peeing in the pool or pooping into a swim diaper. Bacteria from fecal matter in a swim diaper can pose a threat in spite of chlorine.
We don't have a pool, but we have friends who do, and Emma swims every chance she gets. It's great exercise and seems to give her back a feeling of being in control of her own body.
Hah! Another frustrating example of wide differences among oncology practices. I was told that swimming in most large public pool complexes or pool clubs was fine, as there are regulations and standards they have to meet as to pool care, hygiene, chemicals, etc. I was told to be wary of private pools unless I knew the owners well and knew that they maintained their pools well, etc. And baby/wading pools were out, of course, as the assumption with them is that there is a high probability of "accidents."
That is so interesting, Ann, and frustrating as well. We would have loved to be able to swim in a large, public pool on occasion! But I admit, I was pretty selective about which family pools I let Emma use. Having a pool seemed like a lousy idea when I was house hunting with a 2 year old. I sure wish we had one now.
We have our own pool (moved into this house 5 years ago) and I LOVE it!!!! It's not the most practical around here (Kansas City) because of short swimming season. Our docs said chlorinated pools are fine once Lauren was in LTM and ANC above 500. It may have been OK prior to that, but we couldn't swim in the winter anyway. We installed an electric pool cover soon after we moved in and it does a couple things. The big one is safety! No one can accidentally fall in the pool; and the cover holds something crazy like 1500 pounds. It is a solid vinyl cover made by Cover Star; and I know there are other manufacturers. The other thing it does is keep chemical levels constant in the pool. We keep the pool covered unless we are swimming; and our pool never gets chemically imbalanced because it is protected from rain, debris getting in the pool during a big storm, and keeps wildlife out. That may not be a big deal for a lot of people, but we had dead groundhogs in it before we got the cover. We have deer, mice, raccoons, owls, foxes, coyotes, rabbits, you name it. I left the pool open for about 3 hours one day and a large turtle ended up swimming in it!
Some of our neighbors have switched from chlorine to a salt system and some love it; some hate it. Seems like there is no middle ground on the salt vs. chlorine for them. I will tell you that having a pool can sometimes be like having a giant hole in your back yard that sucks up money, but to us it is so worth it. The cover really cuts down on cost of chemicals since it stays balanced, so just need chlorine rather than all the other stuff for when ph gets out of whack. It's so nice to be able to swim in your own back yard and not worry whether or not there has been a fecal incident. If there is, it's caused by my own kid...Vincristine really messes with her gi tract!
We have just got a spa pool. It was actually Pete's Wish. Our onc said that Pete can go in it regardless, even under water, even when his counts are low (his ANC is practically zero at the mo), as long as we keep it exceptionally clean. And we do. And Pete absolutely loves it. It's a great family get-together occasion for us.
09/23/2011 We had our first rush to the hospital yesterday. Enzo had 103.1 they have gotten the temp down under 100 but they will keep him in the hospital for 2 days just to make sure he is ok his bilirubin is at 2.7. I guess my question today to anyone is have you seen high bilirubin counts and if so what have they done. thanks
I'm sorry to hear that Enzo is in the hospital, but I'm glad the fever is down. Emma just got out yesterday after a five day stay because of a neutropenic fever.
Last April, Emma's bilirubin got up to 2.1, and her liver enzymes were quite elevated. They ended up holding chemo, per protocol, until the numbers came back down. Emma's on a different protocol (0434), but I'm guessing that the treatment for Enzo won't be too different.
It was only a 24 hour stay so not to bad with the last poste..Question for everyone .. Enzo has not lost his hair yet ... i know stupid question but should i be worried that something is not working right .. I mean it has been 3 months when will he lose it.. its a little thin .
Hi everyone. My 6 year old son Aaron was diagnosed in October 2011 with pre-B ALL. He's considered high risk because he was a "slow early responder". We are finishing up the consolidation stage, and Aaron never really lost his hair. He had incredibly thick hair to start. I tell people that he started with enough hair for 5 people and now he's down to enough hair for 2 people. I've had the same irrational worries. He didn't lose his hair so something must be wrong. Or, he's feeling ok, something didn't work right. I can't let go of the worry, but apparently not every kid loses all their hair.
Hi Aarons Mom!
Sounds like his hair has been doing a lot of thinning eh? Gabbie's thinned to about half during the first part of consolidation, and by the second month it was all gone. It fell out again in DI. I think for her it was Dox that started it all off.
Hang in there!
Welcome!! My son was diagnosed with ALL 3 weeks ago. It is really hard, and scary. I am so glad I started coming here. I have already learned so much by reading other people's posts. It makes you feel, not so alone. And everyone here has been super nice and really helpful. It makes you feel stronger to have people around that have already survived this journey.
1/11/12 well 6 months into this fight Enzo I wish I could say it's easy but not so much he has been in the hospital twice for fevers and 3 blood transfushions over the last month but I guess that is the life of a kid with leukemia . We have the best Drs and are blessed with everyone at Arnald Palmer in Orlando please feel free to follow Enzo on his facebook page . Look me up email@example.com and the enzos page is on mine . I will try to post a photo of him as well god bless everyone let me know your little ones are doing good or bad
HI -- I'd have to look at my daughters beads to know for sure - but she's had many blood tranfusions, especially in the beginning - she was diagnosed this past summer, June 2011. She's only had platelets a few times, but blood, many times during Induction, and some in Consolidation. None during Interim Maintenance. We're about to start DI ...and from others, I've been told to expect more tranfusions during this phase...it sucks, all of it...b
My daughter has Tcell ALL. She recieved a blood transfusion monthly through frontline treatment (9 mo) and one platelet transfusion after the first month of treatment (I'm not remembering how many the first month for platelets, I want to say 3?) She has also recieved one blood transfusion early in LTM. Gabbie is in the 4th cycel of LTM and last week all of her counts zipped down (she was fighting a rough viral cold) including her Hbg which was about 9. I almost stood and cheered when today, a week later her Hbg was up to nearly 11. Way to grow RBC!!
In other words, its completely with in the bounds of normal to have many transfusions during treatment, especially during front line. No worries!! And unfortunately, there is no way of knowing how many more he might need. Hang in there!
Don't have any real advice on this one - just wanted to stand in solidarity and say we are also getting our fourth transfusion of red blood cells today (her Hgb is 7.0) - we are in DI and all of her counts are very low + she is fighting off some nasty virus. Hope all goes well for you and Enzo!
I have no advice on the transfusions as my son is on a different treatment regimen and hasn't needed any since induction, however...I just received in the mail from my grandmother who lives in Melbourne Beach an article about Enzo with a great picture! Small world, isn't it? I live in Maryland and she sent it to me since it reminded her of her great-grandson!
Hang in there!
So wanted to upstate everyone . So my wife was so happy to get a night with her friends she had this in the plans for weeks the night before the Superbowl so happy ... The girls come that morning to pick her up to go to Tampa for the night , she says vinnie you think I should take my car .. No I got it go enjoy... Well around 3pm Enzo and Larissa and I are watching TV he comes next to me and I pick him up ... Omg he seems warm .. Let me just check... Son of a bitch 102 .. I take off his shirt .. No no no please your mom needs a night out .. Ok let him relax in his room with a fan .. Cool 20 min later 100 looks good ... Ok I will check at 4 .. Son of a bich 101.5 ok what am i to do . Txt Elaine .. She says do the temp under his arm so I did 100.7 ok I tell her let me take a ride to the hospital just to check.....very long story made short ..Elaine gets car meets me at hospit at 11 pm Enzo gets red blood he was a 7.1 hemo and we smile because even thought she lost a badly needed night out with the girls their was no other place she wanted to be other then holding her son.. Amazing wife I have .. Enzo has done real well since sat niight he has been eating well and running around with his sister.. Today is their 4th birthday .. I hope I can write on this page on his 25th birthday ( I know I will ) .. Well hope everyone else is doing well .... One last thing how great was it watch the NY GIANTS take down the Pats again .. Love it .