Hello(First of all, sorry for the length and my rambling),
My name is Rebecca. I have four kids. Two girls who are 5, and two boys who are 3. We recently found out that our daughter, Anna, might have Leukemia. We came back home from the Disney Cruise on Sunday. We all had an amazing time and Anna showed no signs of being sick and was feeling fine. On Monday, when she woke up to get ready for school and went to brush her teeth, she told me she was bleeding in her mouth. When I looked it was her gums, but I didn't think it was anything bad, just that she was brushing to hard. She rinsed and went to school. She looked normal to me. On Tuesday, everything was normal, only when I went to kiss her when I picked her up from school, she was a little warm. On Wednesday, when she woke up, I noticed she was pale and she had a fever. I wanted to keep her home, but it was one of her friends birthday and she had a gift for her and they were going to have a little party for her at school, so she insisted on going to school. I picked her up from school and were following our usual routine when all of a sudden she says “Mom, I don't want to go to dance. I'm too tired.” My two daughters have been in dance since they were 3 years old and a friend gave us a paper offering a week of free classes. We took the opportunity and they instantly fell in love with dance. They wanted to go back so we signed them up. Two years have passed and this year, since they're 5 years old, they wanted to try out for the competition team, both made it and joined, and both had their first solo in January. Anyways, they've never wanted to miss dance. EVER. Last week, since we were going on the cruise, we took the week of and they were both crying because they wanted to dance! I found it strange, and that was the biggest indication that something was wrong with her. I dropped her sister off in dance and took her home, left her there with her dad and little brothers and went back to wait until her sister finished. When I got back home, she was fast asleep. My kids do not sleep unless it's bedtime! And we have a crazy daily routine and still they have all this energy left at the end of the day. That was the second thing that worried me. Yesterday, I didn't send her to school. My husband had the day off so he stayed home with her while I took the rest of the kids to school, which takes me about two hours because the girls go to one school and the boys go to another – and the girls school is about 30 minutes away from our house. When I got back home, it was 9:00am and she was still sleeping. I let her sleep, thinking she would be up in about an hour, but no, she kept sleeping. At 11:30am I went to pick up the boys who finish school at 12pm and again, left her with my husband. I got back – still sleeping. I took her temp, she had a fever. Now I was starting to think that she might have caught something on the cruise, so I woke her up and got her dressed to go to the doctor. When I took her PJ's off, I noticed she had a bruise on her stomach. I asked her how she got it (maybe in dance?) but she said she didn't know. I touched it, no pain. Weird. We went off to the pediatrician. He said it was beginning signs of the flu, but the spontaneous bruise concerned him so he wanted to run a blood test. They did, he told us he would call us when he had the results, and we went home with antibiotics. At about 6pm, I get a call from the pediatrician, expecting him to say that the blood test is fine and the antibiotics should make her better in about a week. Instead, he asks me if I'm driving or if I’m home. I knew it was bad from there. I sat down and told him I was home and he began to go over her blood counts (which by the way he lost me within the first 10 seconds of the explanation. I had no idea what he was talking about or what all the terms meant). Then he says “I'm sorry, but I have bad news. Anna had Leukemia.” I felt this numb feeling all of a sudden and I truly thought I was going to faint, I totally forgot the pediatrician was on the phone. My husband was walking in the room at that moment after giving the boys a bath and I guess the look on my face (and my crying) must have been something because he ran over and asked what was wrong and took the phone from my hands. The doctor then explained it all to him and told him to head over to the hospital first thing in the morning. When he hung up we both sat there and just cried our eyes out. Oh and by this time, Anna's arm, where they drew blood, had a big purple bruise, under her eyes was also a purpleish shade and she was really pale. We knew everything was going to change from that point on. I couldn’t even think about cooking so we ordered pizza for the kids and let them stay up a little later than usual and lay down in our room together to watch a movie. All I could do was look at Anna and think about everything she was about to go through. I had to get up and go to the bathroom to cry a few times. We had our nightly devotional and before putting the kids to bed, I explained things to them in a very broad way. I didn't touch on the serious things, just told them that Anna had to go to the hospital in the morning because she was sick. They didn't ask many questions. We said our prayers, tucked them in, and went to “sleep”. This morning, my husbands parents came and stayed with the rest of the kids(they didn't go to school) and we headed out to our local children's hospital which is about 45 minutes away. We arrived, waited in Oncology, met the doctors, got checked into a room, and then she had a blood transfusion. The Bone Marrow biopsy is scheduled for tomorrow at 11am. She will be put to sleep for it(Thank God).
Anna (all of our kids, actually) is a miracle child. When I married my husband, we soon found out that I was unable to have children. We were told it would never happen, so we began the adoption process and after 18 months the agency contacted us and told us that there was a two month old pregnant mom who wanted to give her baby up for adoption when he/she was born. We meet with her and he family and we were with her throughout her whole pregnancy. When she was 4 months old pregnant and we had recently found out it was a girl, we found out we were pregnant(with Anna)! Emma was born and a little over 4 months later Anna was born(2006). Almost two years later, we find out were pregnant and we had twin boys(2008). All our kids are our miracles and I feel like it's all crumbling apart now because of this. How can my child have CANCER? It never crossed my mind. I don't know what to do, what to think, how to act. We're so scared If you have any advice for us, please share. We really need it. I'm so thankful we were told about this forum this morning.
Welcome and I am so sorry that you have to be part of this board. This board is an amazing wealth of knowledge from experienced cancer parents. I was not lucky enough to have found it early in treatment, but since you have, you will find tons of support and information here.
I know you are freaking out, I remember hearing those words and how scared I was for my child. My best advice is to have a team of family and friends there to help ( moral support, take care of the other kids, clean the house and prepare meals). Everything will start to happen very quickly. After my son was diagnosed, a friend had my house cleaned and sanitized before we returned from the hospital, best present I could have ever asked for. Take up stock in hand sanitizer, antibacterial soap (love the bath & body works kind), clorox wipes, lysol and surgical masks. I know I'm jumping ahead a little, but just thinking of the things I would do when my son started treatment. I also purchased an air cleaner for his room (doctor thought I was going overboard, but he only got one infection during treatment). I have other kids as well, so to keep everything germ free I would make them shower and change clothes after school so as to not bring the germs home with them. Keep visitors down to a minimum. Your Oncologist will most likely have tidbits of their own as well. I know that this is not everything, just trying to think of the most helpful things I did. Best wishes to little Anna for a fast and event free treatment. Feel free to contact me should you have any further questions.
*By the way my son was diagnosed with Lymphoma which is almost the same as leukemia just no bone morrow involvement.
For general information, try http://www.cancer.gov/cancertopics/types/leukemia
I'm so sorry you have to join us here. My son has just finished treatment for leukemia.
It's going to be hard to take in all the information you will get from doctors this week, so write notes and start a binder.
The treatment for leukemia has been developed over decades and there are not very many decisions you need to make. That is about the only easy part of it. The information sheets on the drugs that are part of the treatment are very scary. Maybe read them later. Many kids tolerate the chemo fairly well. Since your daughter is under age nine, she may be in a low-risk category as well. In the next few days the doctors will be able to tell you the type of leukemia and her risk factors. There will be a second bone marrow biopsy taken at day 8 of treatment and the results of that are important.
I am so glad to hear your kids have grandparents who can help out.
Rebecca -- you are starting what will be a long journey. You will get through it. I think I can very safely say that the people on this board may end up being the only people who will truly "get it." We've all been there. There are going to be tough days ahead, but there are going to be surprisingly good days ahead too. Treatment will be tough early on, but you will learn how to deal with it because it is saving your child's life.
Once you know what type of leukemia your daughter has, check back in here and let us know. Start carrying a small notebook to write down what your doctors say, and also to jot down questions that you want to ask them next time you speak to them.
You and your daughter will get through this. My son Sam was diagnosed in 2004 with ALL leukemia. He is now almost 5 years off treatment, and just graduated from college a few months ago.
I'm so sorry to hear about Anna's diagnosis, but you have found a wonderful place for information and support here. My daughter Emma finished two and a half years of treatment for pre t cell ALL in December 2011. Emma is adopted as well, and I've always thought of her as my miracle child. She still is, even more so after what we've gone through. Emma was 6 when she was diagnosed with leukemia, and I and every parent here recalls vividly the shock and abject terror of that diagnosis. The advice others have posted is wonderful. Have friends bring food and take care of household matters. Have friends at the hospital with you to take notes and help you ask questions as you deal with such overwhelming emotions. Ask questions, and if you don't understand the answers (because it's a sharp, steep learning curve), ask again. And use this discussion board to get more information. I know all my good, thoughtful questions occur to me at about 2 in the morning when there's no doctor to ask. But the parents here have been through it all, and someone will have good information and advice to give you.
When you have more information about Anna's leukemia, please let us know.
Thank you for all your help Suzan. My daughter Anna is our first biological child, our other daughter, Emma(Wow our daughters have the same name How funny is that?), is the one who is adopted. I found out I was pregnant(when I was told I would never have kids) with Anna when Emma's birth mom was 4 months pregnant and we had met and agreed about adopting Emma when she was born just two months before. They were both our miracles because we would now have two children after being told we would have none. Emma and Anna are best friends and they are so used to doing everything together, one of the things that hurt me so much right now is seeing them apart and asking for each other every second of the day This is all so scary, but we have faith and we're just trying to take it all in as it comes. Thank you again for everything
Once you have more details on the diagnosis, consider discussing the following with your doctor/treatment team:
1. Length: girls tend to be 2-2.5 years. Boys tend to be treated for 3-3.5years.
2. Cranial radiation versus no radiation. St. Jude's Total XV and Total XVI protocols do not use radiation at all. Other protocols reserve radiation for higher risk patients.
3. Steroids used in the various phases of treatment.
4. Steroid/Vincristine pulses in the maintenance phase (last and longest phase of treatment). Duration and how often for how long?
5. TMPT to determine 6MP (chemo) sensitivity
So sorry you are having to join us here, but I'm really glad you found these boards so early. My 5 year old daughter was diagnosed with ALL in September and this board has been a great source of information as well as comfort for me. You'll get a lot of useful advice, which I can see has already started above. Everyone here has been great with answering questions and for directing you to pertinent threads. Good luck to you, your daugher, and your family.
I am so sorry that Anna has joined our children's cancer club, but glad that you have been directed to the board for support. My daughter who is 4 1/2 was diagnosed in Novemeber and those first few days were so scary, such a blurry mess. Expect a few things
1. you will have questions and then forget to ask when the doctors, so grab a note pad and write things down.
2. we have what is called a Hope Binder and it has a place to put lab results, procedure approvals/explinations, percription papers, treatment plans, etc. If the hospital does not giev you one, get a binder and make one- it is a life saver for me.
3. once bone marrow results come back you will have information about type of ALL, risk level, and then if you are at a hospital that is part of the Childrens Oncology Group, the doctors will start talking to you about clinical trials. Don't be afraid to take an hour or so to discuss everything before saying yes or no, it is a lot to take in.
4. Cleaning is crazy! I have always been OCD about cleaning, but this is a whole new level. Invest in germ-x, lysol hands free soap dispensers, kleenex paper towels, and lysol wipes. I went to Costco and Walmart and stocked up, but soon found I was almost out of several things so get twice what you think you will need. I also dedicated one bathroom for just our daighter- potty, baths, washing... only her in there (we have 3 1/2, so I could... you have 4 chhildren so this may not be possible, but with little boys around it is so much easier to keep her area clean)
5. When people ask what they can do tell them dinners, clean your house (depending on how close/comfortable you are with them), pj's, slippers, arts and crafts to fill the time, and purchase the cleaning stuff. We came home to a house that looked like christmas x2 and rather than stuffed animals I would have loved canisters of lysol wipes, but I did not know all this yet.
6. Breathe! This is a long road with many bumps and curves, but Anna and your family will find strength in eachother and faith.
I am praying for you and your family.
oh, and ask for EMLA creme to numb her arms for the pokes before they put the port in... helps so much!
Emersyn, dx 11/13/11 pre B ALL standard risk (ALL0932 trail)
I had to thank you all individually because I'm just so thankful for all the information and help you have all provided.
Anna had her Bone Marrow Biopsy this morning and is recovering well.
Her grandparents came over with her brothers and sister for just a little visit, but she's much happier now that she got to see them even though it was only for a few minutes.
One of the big things on my mind right now is whether we should stick around at our local hospital or try and get refered to St.Jude once we have more information. I've never met anyone who has had to go to St.Jude, but I have heard that they're amazing and that, since they're a research hospital and have their own clinical trials, can do things their own way. Did you guys stay at your local hospital or did you go to other hospitals that are well-know for their cancer treatment? I've been looking around the internet and different children's hospitals here in the U.S to see what I can find because we're willing to go anywhere as long as we have peace of mind knowing she's being treated somewhere that's really good.
I know I'm jumping ahead and I don't even know what type of Leukemia she has yet, but I can't help everything going through my mind
Thank you all so much for all you have provided to us. It's all been a BIG help.
I wish you all many blessings,
It is all so much so never be sorry for having questions! You are doing what you should: taking care of your daughter and getting her the best treatment possible. We are on the west coast (Northern Nevada) and the closest hospital to us does not treat pediatric cancer, in fact when we were diagnosed the ER contacted Oakland Children's Hospital immediatly and we were there within 4 hours. I would say three of the things you should ask of the hospital/staff is if they are part of the Childrens Oncology Group, do they particiapte in clinical traials, and how much experience they have with these cases each year. Also important is how comfortable are you with the doctors and nurses?
Only you can know what is right, but we knew that Oakland was right for us. It is 4+hours from our home, but worth every minute driving and staying with friends/relatives to get Emersyn the very best treatment.
I do know that you have to be referred to St. Jude's and I am not sure what would constitute the need for a referral.
Praying for your family and the best of news that you can get form these types of situations.
I think you will want to be where they have programs in place that specifically treats pediatric cancer -- esp. for the diagnosis that you may get (still hoping you will only got a scare of a lifetime and not the raw deal). Key is that you are comfortable with your treatment team. Being close to home and your support network is important too.
When you interview your team, it would probably be worthwhile to ask them about other "pediatric capabilities / specialties" (heart, bone, brain, internal, surgery, icu, etc) too -- just in case there are bumps on the road. The more expert pediatric specialties in-house or nearby, the better.
Children Oncology Group (COG) hospitals have their own trials.
Dana-Farber has its own trials.
St. Jude has its own trials.
A clinical trial is essentially a step-by-step program that calls out what drugs to use when, how much and what to do given patient responses.
If a particular trial is successful, it becomes, generally speaking, the "standard of care". On-going trials are meant to test variations to the "standard of care" to find a more optimal standard of care. Sometimes, a trial produces a superior result and at other times, a trial may produce an inferior result.
Actually, most of the trials are quite similar in their contents -- the drugs are essentially the same. Current "routine" (you want routine ;-) ) trials seem to test a bit more of drug X here, a bit less of drug Y there, perhaps, a tad of something new (like Nelarabine for T-CELL), less cranial radiation, etc.
It is nice to be at a children's hospital. We were fortunate enough to have one less than an hour away. It is a lot of appointments. My son was only in-patient for one night, after the first ten days of treatment.
Be aware that St. Judes will only take patients if they have not started treatment anywhere else. Since ALL treatment usually starts immediately, you have to decide quickly and talk to them right away. There are some threads about other people at St. Judes in this forum. People have said they cover travel and all costs, but it may mean more time away from home.
The doctors can tell you more after the biopsy, but they may not know fully how your child's ALL responds to the chemo until the end of the first 30 days. They also check the genetics of the leukemia cells in case they can guess from similar cases that it might need more or less chemo.
i usually never comment in the children area as our plight deals with my 47 year old wife with ALL. The account of your getting the news just brought me back to that dark time. I passed as my wife was on the phone and she asked me to pick up. We were told to meet the Dr at the 3rd floor of the local hospital to discuss the blood work taken the day before. No explanation but we were greeted on the 3rd floor with a sign that read "oncology". I remember thinking couldn't they have picked a better place to meet us other than a cancer floor...Duh.
Well the first few weeks were the toughest...all I wanted to do was sleep, but all I hated to do was sleep because I HATED so much waking up to every day realize this was not a bad dream and the day would be filled for my Linda with horrific stuff.
Well, like many before me, and with the unselfish help of the people on these boards, here we are almost 3 years later. Thankfully a routine set in after a while and things changed.
I hope the change happens for your family smoothly,
I'll be hoping for the best...things will be more than just OK..In time, they will be better than normal.
So sorry you had to find us. Keep us posted. Here are some of my tips:
*Everyone washes hands as soon as they get in the house from being gone.
*Save every receipt for medical expenses and insurance statements. We are finding this out the hard way as we do our taxes. The IRS wants everything broken down by specific expense.
*Give your child her own toothpaste, lotion, and bath towels. No more sharing of hand towels. For awhile there when it was very bad, we used disposable hand towels and we still use paper cups in the bathroom.
*Find a close pharmacy that is well stocked.
*If your child is not responding to the pain/nausea meds, get your "mama bear" face on and ask for more or a different kind. There were a few moments where 8mg. of Zofran and Tylenol w/codeine were our standard 2 hour meds!
My son Jack, age 10, was diagnosed on 10/27/10 with ALL T-cell. He has responded gloriously, and is back playing ice hockey 3-5x/week and being a normal 4th grader (who still happens to get chemo every week). He even ran his first 5k this fall in 33 minutes after 11 months of chemo!
Good luck, we'll keep you in our prayers.
Thank you all!
Jennifer, thanks for all the help. Where we are right now is part of the COG. Everyone is being very nice, but the only thing that I don't like too much is that the Children's Hospital itself doesn't treat cancer, we have to go across the street to a medical center that is not just for kids, they treat adults too and I know how different treatment for adults and children can be(although I know they know what they are doing). The hospital is 45 minutes away from home. It's not that I'm not happy here, because again, everyone is great; but I don't know, I just have this feeling that's telling me we should find a Children's hospital where THEY actually treat pediatric cancer. I don't know if I'm being dumb or if I sound crazy, but I don't know, I just feel that way. Am I being ridiculous?
tcell_all, thank you for pointing out some things I hadn't thought about.
Fontenrose, thanks. I know St.Jude accepts children who haven't started treatment, that's why we're trying to figure out where it would be best to go even now that we don't even know what she has yet, just in case we have to make a quick decision.
Jim, thank you for your advice. I hope your wife is doing well.
Kim, thanks for all your tips.
I'm so thankful for this forum! We're getting so much help and advice from you all. THANK YOU
We still haven't gotten the results back (which is kinda worrying me because I've been reading around and I've heard of people getting their results back on the same afternoon and it's been a day and a half and still nothing)! Hopefully we'll know more soon. I'm going crazy waiting!!!
I'll keep you all updated.
God bless you all,
so sorry you are going through this. My daughter, Elke, was diagnosed at 2 1/2 with ALL, and finished treatment one year ago.
There is much I'd like to say (I have a different perspective on obsessive cleaning than some here -- our oncologists told me there was no need to go crazy with sanitizing things in our house,etc), but I'll save some of it to address your primary issue now -- whether to go to a different hospital. First, I am a little confused, as it seems so are you, as to why it is taking them so long to get back to you with the results of the BMB (bone marrow biopsy). That would be a primary question I would ask of the oncologists there -- is this indicative of how long it will take in the future to get lab results? In our case, Elke was brought into the ER on a Wednesday afternoon, and we had a confirmed leukemia diagnosis based on just the results of her blood tests several hours later. Now, that was because her leukemia was fairly advanced, and I can understand why sometimes drs do not know until the BMB that it is leukemia. Did you say that Anna, too, was given a confirmed diagnosis of leukemia based on her blood tests alone? If so, the marrow must be reasonably packed with leukemic cells, and you wouldn't expect the results of a BMB to take all that long. Elke's BMB was not scheduled until 36 hours later, but that was only because the next day was Thanksgiving. She had a BMB done on Friday morning (after receiving several transfusions on Thursday), and our oncologist sat down with us on Friday afternoon with the results. Now I don't know if the pathologist had issued his full report by then, but our oncologists certainly knew the results of the BMB within hours. Our oncologists usually look at the slides themselves, in addition to the pathologist. So I would definitely ask why it took so long to get results back to you.
Elke was treated at a regional hospital 20+ minutes away from our home. It was recommended by our pediatricians, and has a good reputation. Although it does "have" a Children's hospital, the Children's Hospital is not in a different facility than the rest of the (adult) hospital. There was no separate pediatric oncology inpatient wing -- the oncology kids share the pediatric ward with all the other children who are inpatient. Some people seem to freak out over this idea, but it worked out great for us. Since it is shared facilities, the oncology kids ALWAYS get a private room, along one hallway, with the nicest rooms, They are also first priority with the nursing staff. We loved this (I shudder whenever I hear of oncology kids sharing rooms with other oncology kids who are feverish, etc.), and the level of care was highly personalized.
I know when you are facing such a nightmarish diagnosis that your mind starts racing towards doing the absolute best thing to ensure your child's survival. It's terrifying. And if you start out at a smaller, more local hospital, you wonder if you should switch to a more nationally-regarded center for pediatric oncology. Since we are in NJ, it never crossed my mind to go to St. Jude (too far away), but I considered both Memorial Sloan Kettering (MSK) and CHOP (Children's Hospital of Philadelphia). I asked lots of questions and did research, and so did my family. My mother spoke to a family friend who was a dr at MSK, who recommended staying at our local hospital. His reasoning was that Elke had been diagnosed with a relatively common type of ALL, that her treatment would be fairly standardized no matter where she went, that her prognosis would be the same, and that we would be spending years going back and forth between our home and whatever hospital we chose. He thought it would be far better for my daughter and our family as a whole if, especially in emergencies, we could rush her to someplace as close as our regional hospital. And in retrospect I definitely think we made the right decision for our family by staying local. My daughter received optimal, very personalized care, she didn't have to deal with long commutes, and my other children did not have to deal with Elke and I going far away for treatment.
It's a highly personal decision, and you should decide how much confidence you have in the medical staff currently treating your child. And, of course, so much depends on the ultimate diagnosis. I can tell you that if Elke had been diagnosed with a rarer type of leukemia, I most likely would have taken her to CHOP.
Hope you get the BMB results soon!
I just wanted to you know that we were sent to the local children's hospital on a Friday morning. It was a long and tough day with no real answers. The lead onc said it could be a virus, aplastic anemia, or leukemia. I just knew I did not want it to be leukemia but she explained aplastic anemia is really tough one. So I tried to pick virus cause she said if that was the case then we could get some vitamins and go home. I could tell that she doubted that. They did the bone marrow that day (Friday) and it was tough for them to do as he was 98% packed but they would not tell us for sure what the cells were but at that point it seemed to be leukemia. They did not confirm it was leukemia until Sunday. I had heard nurses in the room talking about blasts etc. so I knew it already but to my wife it was not real until they told us on that Sunday. So just wanted to you know that it took two full days for us to hear results. We did not start treatment until next day and we were at a children's COG hospital. If there is one close to you or even a bit further than where you are it might be worth it. Josef really enjoyed the environment and was happy to get all the little toys and special ways they handle kids. Being in a room full of kids on chemo is surprisingly uplifting as most of the kids keep on playing no matter what.
If they have not given chemo then you have not started treatment so if you are close by you should be able to go to St. Jude. I am pretty sure there policy is actually starting treatment and just having a bone marrow draw would not be treatment. Not sure if you mentioned your hometown but if you wanted to you could put out a message here asking for opinions on hospitals in your area I have seen others do that on here and it seems they were given great responses.
Yep, it's impt that it's a COG hospital (ours was). But since you know it is, that's one thing you don't have to worry about. All the COG hospitals follow the same protocols and recommendations, which is nice. So then it really becomes an issue of whether you feel comfortable there. Which is such a difficult decision to make because, quite frankly, of course you don't feel comfortable in the least right now. But try to size up your drs and medical staff, and get a sense of whether you would be able to work with them for several years to come.
When our oncologist delivered the results of the BMB to us and discussed the COG protocol that was recommended for our daughter, he also went out of his way to say that it was totally understood that we might seek a second recommendation, and that we should feel perfectly comfortable discussing this with them. So your current medical staff, if they are professionals who are worth working with, should feel similarly comfortable with you asking about whether you should go to a more child-centered hospital. I'm sure they have fielded questions like this before, and would help you sort all this out. If not, then I would definitely look elsewhere.
Like Jim, I don't generally chime in on the My Child forum. However, I do have some input on your treatment center.
At the medical center accross the street, you will meet oncologists who specialize in pediatric leukemia. It might not be an all kid's hospital, but the people you meet will all be specialists. If ever you don't feel comfortable with the doctors or the hospital, find other options. But, don't count them out just yet; meet the docs and see how you feel.
Also, a lot of adults on pediatric protocols (such as my husband), which means they get the same intense chemo regimine as the kids.
I'm so sorry you had to find all of us here on the LLS, but we are all here for you now. When Nate (my husband, dx 12/22/10 at age 24) was diagnosed, I was 12 weeks preggo with our first. We were both in a very dark place. He did Hyper CVAD induction (very common in kids) and no consolidation, and we opted to do a transplant because his brother was a match, and that was 3/2/11. Almost a year later, and he is alive, well, and cancer free. If he can do it, so can your little girl.
We're rooting for you.
Hi Rebecca, I'm so sorry that this is happening. None of us ever thought we'd be here, but this is a great resource and I hope you find lots of support here on your journey. You've already been given some great advice from some very wise parents here.
I'll add my thoughts about choosing a hospital. We chose our local hospital/treatment center. It's a great facility, 20 minutes from home. A small center, but a COG hospital and the only Nat'l Cancer Institute facility in our state. Like, Ann, we're in between MSKCC and CHOP in philadelphia - both excellent hospitals. I took my daughter to CHOP for a consult, and was told that they'd follow the same protocol, so I felt comfortable with our choice, and I was happy that it was close to home. You need to live your life during treatment, and help your child do all that they can to feel connected.
My daughter had an aggressive rare form of lymphoma, and her treatment protocol was rough, but shorter than for ALL - one year of treatment and no "maintenance" phase. She's now almost one year off treatment. Looking back, I'm happy with some of her treatment, but in hindsight, I may have made a different choice and taken her to one of the larger hospitals, specifically to MSKCC. Why? Because I think that they would have done a better job at addressing not just the protocol, but all the things that can happen along the way. They would have done a better job of ensuring that she received cardio-protectants before and during treatment with anthracyclines (which she did not receive at our local hospital.) They would have done a better job at offering more supplemental therapies for some of the other side effects. And they would have done a better job at providing supports for teens. I've come to realize that the protocol may be the same, but sometimes a smaller hospital is just not as experienced with all the "rare" side effects and they don't have the experienced complementary medical staff. (I'll add that Ann's experience with Elke shows that smaller facilities can do a very good job with this - Elke received wonderful care at her hospital and had several rare side effects and bumps along the way.)
On the other hand, I trusted her team, her oncology nurse was fantastic, and she was able to maintain a large degree of normalcy throughout treatment.
There are definitely pros and cons to each - no matter which choice you make, you will get good care, and it will be the right choice for your family and your needs.
Sending lots of hugs.
Thanks guys. Thanks for all the help you've been giving me.
We FINALLY got the results. They weren't as expected but I'm glad we finally know what we're dealing with. I went outside the room to ask why it was taking so long to get the results and I bumped into the doctor (who was coming to give us the results) before I got to ask anything. Anyways, we were told, that most kids are diagnosed with ALL, and since it's the most common type of Leukemia in kids, I guess we kinda expected it to be ALL. Well, not exactly the news we got. Turns out Anna has APL (Acute Promyelocytic Leukemia) which is a subtype of AML (It's AML M3), which I'm told and understand is rare in children. The doctor told us that only about 500 kids are diagnosed with a type of AML each year, and of those 500, ONLY 50 are diagnosed with APL!!! He says 75-80% become long term survivors. He then went on to explaining a whole bunch of things and treatment and all that stuff. He says that he's only treated 2 APL patients in the past (diagnosed a third but they went to another hospital). We're the forth he's seen in this hospital. He says that since Anna's White Blood Cell count was above 10,000 she's considered High Risk. Well, now we need to decide where to go or stay. We talked to him about our thoughts and he said he completely understands and our feelings are normal; "she's your child and you have to do what you think is best before anything else" and said he would have if it was his kid. Before we even said anything about hospitals we were considering, he said he would be more than happy to refer her to St.Jude. He did. We talked about hospitals and we've pretty much narrowed our choices down to St.Jude and CHOP. I hear GREAT things about both. I really think that if she would have been diagnosed with ALL or even a more common type of AML, I would have chosen to stay without a doubt(I was already leaning towards staying until this bomb dropped), but now that it's more complex, I'm more worried and scared. This is probably also going to mean hospitalization during most of treatment so we're still going to be in the hospital and away from home. I know I probably don't make any sense. Sorry about that St.Jude is 10 hours away and CHOP is 9 hours away from home. We live in NC. I'm sorry I didn't update you all earlier, but I had to call my husbands and my parents and all to let them know the news and then other family members started calling and I just finished updating everyone else. Thank you all so much for all the help and support you've been providing us so kindly. We really appreciate everything! Any input on SJ or CHOP?
I think AML has a shorter treatment length, so, perhaps, one positive. And, the EFS 75-80% is approximately the same as it is for ALL in general.
Here is the latest on US News Best Pediatric Cancer Hospitals. You may want to check whether CHOP or St. Jude has more experience specifically with APL.
I wish you all the best. We are coming up to our one year since diagnosis and just want you to know your child will get better!
I don't post often, hardly ever these days but I check...your post did kind of strike a cord - mainly because you received the news under the exact same circumstances, over the phone ... and your Anna had same symptoms [ my son didn't have bruising though]. I want to send you a positive message about how you and your family can do this and Anna can do this. You will get through. My son was 13, his siblings were 5 and 3 respectively at the time of his diagnosis and we lived over an hour and a half from the children's hospital here. That was nearly 9 years ago. He had AML sub group M0... not a favourable one either. Treatment was tough and made him look sick. It was a long journey. He had a BMT then relapse about 5.5 years out of treatment. Another 2 transplants and he is now 21. He is still on lots of meds...has some "collateral damage" as I call it...but WOW he is alive and for the most part enjoying life.
At 13 I wanted him to live till he was sweet 16 and experience his first kiss....
At 16 I wanted him to live till he was 18 and could get his licence....
At 18 I wanted to celebrate his 21st with him and see him as a man....
you will have these wishes to I am sure... and when you look at your little girl and see the struggle...hold on to that hope and believe you can do it. One step at a time.
I wish you all the best in the world for all your miracles and pray your daughter will continue to be your biggest one!
so sorry to hear about the results. But, as you said, now you can move forward toward beating it! On a positive note, a teenager in our town was diagnosed with APL about 6 months ago, and he is doing very well. Seriously. Incredible strides have been made in the treatment of APL. Incredible. He was actually home a fair share for treatment (although definitely had his fair share of inpatient stays), and was treated at a local hospital here in NJ. That being said, if you are deciding between CHOP and SJ (both fabulous hospitals), and both are that far away, I, personally, might lean toward St. Jude. All expenses covered, and I hear they often have affiliates within driving distance of you where you can take your child for some appointments later on, when things are more stable. If Elke had been diagnosed with APL we probably would have ended up at CHOP, but we're about two hours away, so that's still a day trip for us.
I'm sure you will make a good decision either way.
My son was diagnosed with APL November 2010 at 19 months of age. We received all of our care at CHOP and I was very happy with the care from day one. He threw them a few curve balls throughout his course of treatment and our physician had no problem reaching out to other COG facilities for suggestions because it's not very common in children. Treatment was rough at times, but Kieran did well. Amazingly a large part of his consolidation treatment was Arsenic. Sounds crazy, but he had absolutely had no side effects from it. We've been in maintance since July 2011. Please let me know if Ican be of any assistance to you. I would often visit the AML board because I couldn't find anyone here. I remember vividly being told Kieran's diagnosis and that first month in the hospital. It's very difficult, but fortunately with APL they know how to treat it and it is so rare to relapse. Again, please feel free to ask any questions about treatment, etc. So sorry you and your family have to deal with this!
Rebecca -- can't comment on St. Jude's, which I understand is wonderful. Our experience (for ALL) is at CHOP, and it is terrific. Incredibly caring, great doctors and nurses, superb new facilities. convenient Ronald McDonald House (which started right here at CHOP). Nothing but good things to say.
My daughter was diagnosed with AML M4 November 2010. Truth be known, APL has a better prognosis than most of the other AML's despite only 50 kids a year developing it. There has been a lot of advances in APL that have not been made in non-APL AML. The treatment is completely different than the other AML treatments because they have found drugs that respond better to it. That aside, I am so sorry your baby has to go through any treatment. No child should. You will find lots of support on this website because despite what type of Leukemia you have, only we know what you are going through. We know the stressors because we live them everyday. We live the side effects and we live the losses. Good luck to you and your beautiful family.
Sorry that the news was not better. But it does sound like the oncologist is willing to help you find another hospital. I do not know anything about AML protocols but I do keep up with ALL protocols by COG and St. Jude and if it was my child I would to know the differences in each protocol and very importantly how old is the protocol. I would be leaning to St. Jude due to the amazing support network they have but if they wanted my child on a protocol that was a few years old I might have more questions. Keep reaching out you will learn quickly. In my experience with our child and reading others in here the best doctors will openly welcome tough questions. If you feel that you do not even know the questions this board can help but I am sure the doctors will help with this as well. Jon
Thanks again everyone!
We still havent decided (Sooo hard). We did hear back from St.Jude and they've accepted us. Going to talk to both hospital about protocols soon.
The good thing about both is that we have close family in both cities. Mom lives in Philly, sister lives in Memphis.
Thank you all so much again. I'll get back to you soon.
I am sorry to read of your little girl. My son was 18 when diagnosed with aml m5, high risk with wbc 183,000 wbc and cns involvement. He was treated at a cog affiliated hospital in florida. The treatment is very aggressive and required ALOT of hospitalization. Unfortunately he relapsed 14 mos after treatment finished and went through more treatment then a double umbilical cord stem cell transplant at Dukes childrens transplant center 5 years ago.
I just wanted to pop in and to wish you the best on a difficult journey for your little girl and for you all.
Hey Rebecca - we live in NC too. I think if things with our daughter had not happened so fast we would have chosen to go to St Judes, IF that had ever been given as an option for us. Our daughter's treatment started 3 days after her biopsy - we were still processing what was happening and in shock. We are at Vidant Health ~ formerly Pitt County Memorial Hospital in Greenville, though I think they have another name for the children's hospital. They follow a COG plan and she has standard risk ALL so I feel like she is still getting the treatment she needs, but I would probably be more comfortable and feel more assured with the staff at St Judes. Plus St Judes has the benefit of the financial assistance.
I hope and pray everything goes well for you, whatever decision you make. I'm so glad you received some answers.
I'm going to throw another idea out there, seeing as you all are in NC. Have you thought about considering Duke Children's? Duke is a fabulous hospital and considered one of the top peds hospitals in the nation, and having you there would allow you to be closer to home and friends/family. I have a niece treated at Duke Children's (not for cancer but for Cystic Fibrosis) and her mom raves about the care Alexia receives there. Just an idea.
Mom to 26 month old Elle, dx with pre-b ALL, HR on 01/17/2012
I'm so glad to hear some mentions on Duke Children's because that's where we ended up going to We talked to all three hospitals - St.Jude, CHOP, and Duke Children's. All three have experience with APL. All three told us they would use the same clinical trial protocol (Surprisingly, even St.Jude uses it). This is most of the things we thought about we thought about: St.Jude is 10 hours away from home! Sure my sister lives over there and she could come visit and she would be big support for us, but 1-(For Anna's sake) her youngest is 11. Not exactly in Anna's age range to play and talk when they visit. 2-(Also considering Anna) She see's them maybe 2-3 times a year(Thanksgiving, Christmas, New Years), she doesn't have the same relationship she has with her cousins back home. 3-St.Jude would have been AMAZING for so many reasons, like no cost for transportation and such, but we would still have to pay for the long distance trip for the kids, my husband, and other family members to come to the hospital; and of course getting the help for me and Anna would of been helpful regardless, but it's also for the same treatment, so why go so far?
CHOP is 9 hours away from home. It's great too, but again, same protocol and far from home. My mom living over there is GREAT, but had told us that if we didn't go to CHOP, she would come to us(and she'll be doing that this weekend).
Duke Children's is 2 hours away from home. A two hours car drive is very different from a 9 or 10 hour one - specially for my other kids coming to visit. Being here we can have not just her siblings(which are so important to her)visit, but her close cousins(who's ages range from 1-9), grandparents, my husband can come easily after work and stay with us the days he doesn't work, we'll be close to home when she doesn't have to be inpatient or after treatment when we have to go in for follow-ups(Long time from now but I still thought about it).
When we talked to Duke Children's they assured us that if they would always be able to willingly contact CHOP and even St.Jude since they both have experience with the protocol.
We were transferred over here yesterday afternoon. From the moment we got there I knew we had made the right choice. Everyone is so kind and caring. The hospital is so bright and colorful. Everyone was making Anna laugh and smile. When we got checked in and she got into her bed, the first thing she said was "I really love this place." That made me so happy. Every time I would step out the door of her room, a nurse would get up and walk towards us and ask if we needed anything. Sometimes I didn't even need anything, I just wanted to pop my head out and look around and they would get up and I was starting to feel bad so I stopped going outside. Lol! Her doctor is great, the nurses are great, child life is great!!!!!! I'm very happy with our decision and I don't regret anything about it. We talked about everything yesterday (protocol, her treatment, how everything works, what goes on, Broviac, Hickman, Port-a-cath, etc, etc). We decided on getting her a port. It sounded like the best option. She's having her surgery as I type this. Everyone is awesome here, taking awesome care of Anna and reassuring us through everything we talk about.
Thank you all so much for everything. I read all your replies even though I didn't have time to answer and I'm thankful for each one of them. Thanks guys
I know we're in great hands and I'm so happy we chose to come here. I know this is going to be a tough journey and we're still trying to grasp the concept that out little girl has CANCER, but it's good to know we're close to home and family and we know we made the right choice, specially since they were all going to use the same protocol regardless of where we went.
Thanks again everyone,
Hi Becky. I'm glad to hear you ended up at Duke and closer to home. It's an amazing research hospital with excellent resources. When Emma was first diagnosed, a friend put me in touch with the head of pediatric oncology at the Duke Medical Center, and I was so grateful to and impressed by him. He took the time to have several long phone conversations with me to answer questions that I hadn't thought of asking Emma's doctors or had been too afraid to ask. He was honest, accurate, and compassionate. I was surprised that someone with such a busy schedule would be so willing to take the time with a parent of a child who wasn't even a patient. I can't think of his name right this minute, but I'll look it up for you later today.
I'm glad Anna's port surgery went well. I'm thinking of her and of your Emma and how special that relationship must be. I'm glad Anna's at a hospital close enough for the girls to see each other regularly.
So glad your daughter's port surgery went well. I am also glad you all seem to have found a great place for Anna's care. We are still new to this Leukemia thing as well, Elle was diagnosed January 17th.
Elle is treated at All Children's Hospital in St. Petersburg, FL. She had a hard time adjusting but is gradually warming up to the docs/nurses (she's 26 months).
My daughter just finished her ALL treatment at Duke in August.The Doctors and nurses are very nice. Duke children is very nice hospital.I don't live too far from the hospital so if there is anything I can help you with then let me know. Atleast once a day I check lls board.
Hi Rebecca, just wanted to say hello and glad you have a treatment plan in place! I too was shocked when they said my 3-year-old had leukemia (they could tell with one glance at his blood results in the ER), and we expected it to be ALL (which I had in my head had an 85% cure rate). It was pretty devastating when they said he had AML (which has a 50-60% cure rate)... but hey that's better than an incurable brain tumor. As a previous poster said APL is probably the best kind of AML to get because you can treat it with Vitamin A/arsenic..that doesn't make the journey any easier. There are some good things and bad things about AML treatment vs. ALL:
Shorter (5-7 months inpatient), no maintenance
No vincristine neuropathy
You are inpatient for 5-7 months with very few breaks
Chemo is harsher, longer neutropenia, more heart effects
More chance of bone marrow transplant
My son has M5 and we are just recovering from a stem cell transplant (which with APL you will only have to do in the event of a relapse).
Thanks for the reassuring words alexno I hope your son is doing good. We started oral and IV chemo today. Taking pills for the first time ever was REALLY hard for her (she had to do it in the morning and in the evening), but she eventually got it down and then a little later they came in and did some arts and crafts with her that got her mind off of it and she was fine. The second time was a little easier than the first.
So great that you ventured in here, it's a warm & caring place with much information to be shared from people travelling the same long emotional road, this is where people truely do "Get it", I'm happy to hear you made your difficult decision and are closer to home, sending healing hugz & wish you and your family well throughout your journey. You will find it's not all bad along the way there will be many high's to be had, enjoy them, and take one day at a time.
Jenn (aka greeney, my user name is greeney here but sometimes it switches to Jenn dkw)
Kieran isn't able to swallow his ATRA whole yet. In the beginning the nurses would dissolve the capsule in warm water and give it a syringe. Took forever to dissolve and he didn't like the taste at all. A few weeks into it a nurse suggested poking a hole in the capsule. They used a sterile needle to poke a hole in it and then squeeze it into his mouth. We still use this technique at home for the weeks he's on it. He does so much better taking it this way!