r/leukemia • u/A_King_17 • Mar 01 '26
5 year old daughter starting induction phase - B-ALL
My daughter was diagnosed 2/26/26 with B-Cell ALL, confirmed bone marrow on 2/27 and given chemo via LP on this day as well. Our world has shattered and she is feeling so many emotions right now but we are trying to make things as comfortable and light hearted as possible for her. We are blow away by the staff at the hospital and how wonderful they have been, they have done so many things to help us get her out of bed and kind of forget she’s sick since we’ve been here, but I’m coming on here today to see what other things we can do to help make this a little less heavy for her.
We plan to be in the hospital at lease for the next 10 days, should we start decorating her room? Any recommendations for this that have helped your little one feel comforted in this space?
Are there special port shirts you have found that your kid likes? Snaps vs zippers? Tools on Amazon to make your own?
Obviously school is off the table for now, should I even think about trying to do some homeschooling once we get moved to outpatient care or should we just get through this induction phase before I even try to think about her education?
Any recommendations you have that could help us get through this nightmare are much appreciated. We have a supper amazing community and support system rallying behind us here. We also have a 3 year old daughter who really misses her sister, finally got them together last night but thinking after she gets her port placed Monday and begins chemo we’ll keep visits minimal until we learn how her body reacts to the meds and how she feels.
Another note, we live 3 hours away from the hospital and outpatient center, so anyone else who travels for treatments and has any recommendations on that is appreciated at well.
So many things I feel like I could go on forever…
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u/Syvestral Mar 01 '26
I am so sorry you and your little girl are going through this. I am 21, and was diagnosed with Ph- B-cell ALL in the beginning of February. I'm currently still in the hospital receiving induction chemo, and will find out if I'm in remission on march 9th. Because of my age I'm on a pediatric chemotherapy regimen. I'm also in the beginning of this journey so I wanted to comment to let you know you and your family are not alone. ❤️
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u/evrgrntea Mar 01 '26
I’m so sorry you are going through this. Your daughters will have to be strong and your 5 year old now has a very tough journey. The leukemia lymphoma society has some great educations/ organizational resources. Reach out (or better yet have a friend/family member do it). Your social worker can get you in contact with local resources, get to know them now.
Get to know her care team. Be there for rounds daily and if you can’t, request that the care team speaks to you in person when you get there. You and she are the most important members of the team. Write down any questions you have, big or small. You’ll need to learn about care for her central line and it’s very important that you follow guidance.
Go over the top with toiletries. Hospital towels and wash cloths suck. See if there is a Ronald McDonald house or something similar so you can wash clothes on site. Keep her favorite popsicles stocked. Ask someone to pick up her favorite snacks. Even if she’s not feeling well, keep her eating, celebrate little bites. My daughter’s favorite was a mix of peanut butter, yogurt and banana.
Absolutely decorate now but know you will have to remove everything between each hospital stay. Bring in her favorite things, make her stay as comfortable as possible. We decorated with themes (Disney Princess, fall, holiday, birds, forest animals)
Luke’s fast breaks are great shirts for central lines.
Bring in books, toys/games that she loves:legos, coloring books, puzzles, etc to keep her mind occupied. If you can’t bring them in, ask the staff to bring some to her room. On the flip side, when she’s not feeling well, get her out of bed and moving. Walk to the nurses station, around the halls but allow her to accept her emotions, please talk about it. Request that PT/OT, child life, art/music therapy staff come by and make some friends. Let her watch some tv, but don’t let her just sit there behind the screen.
Tell her teachers/school and ask that letters are sent to cheer her up. You can also ask what they’re learning in school and request light educational material. Keep reading to her!
Lean on baby sis for art and crafts. Let them FaceTime and when counts are high enough, let them bond.
My whole heart goes out to you and your family. This will be tough but you can get through. My 10month old is now an almost 4 year old AML survivor and the 5 rounds of treatment were the hardest of our lives. Your daughter’s treatment will be different but stay strong. Take lots of pictures, read to her, make positive memories in this dark time (for both of you).
Sorry for the novel. I’m here for you. I’ll be thinking of your little one’s journey often and wishing you strength.
You are stronger than the storm you are facing right now. It might not feel that way right now and that’s okay! It’s time to learn to dance in the rain.
Hugs.
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u/JeffreyNotDalhmer Mar 01 '26
Hello friend👋! I wish your daughter a speedy recovery and your family strength while you’re going through this. I am 24 years old and i myself got diagnosed with Ph-ve B-ALL on 2/14/26 and i’m currently undergoing chemotherapy . It’s better to make it feel like a home to her. Please do everything you can to not let her stress. Since she is young, she’s probably confused on what’s going on with her. All the colors and things which she likes and makes her happy. But also make sure everything’s disinfected properly. The LP sure did hurt for me(the headaches were bad) but it was negative for bone marrow. Assuming that the port is gonna be on the chest, long v neck pajama’s will help. I don’t know if there are any specific port shirts available. I’ll find out and let you know. Living 3 hours apart from the OP is gonna be something to look out for. There are some services which some hospitals provide where they can provide you a home away from home while your daughter’s in the hospital. Feel free to DM me if you have any questions :)
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u/Future_Story1101 Mar 01 '26
My son (now 6) was diagnosed with T all in the fall of 2024 at age 5. He was inpatient for 1 month. I wouldn’t worry about school at the moment. Once he was feeling well enough (I think about 60 days into treatment) his teacher would come over once a week to tutor and we set up a stream to his class so he could join virtually for reading lessons most days. He started going back at the end of K- and maybe had a total of 8 weeks of class all year. He is still only going to school about 1/2 of the time.
The hospital social worker will help you figure this out. I was very open with his school and class- some parents don’t share anything at all. There are programs that will give the school what they need to set up a live stream and a computer or tablet for your child so she can join from home- the school is responsible for teaching your child still- so some tutoring will likely be involved as well. But -unless your child already has special needs- 5 is so young that they can catch up- there is so much pre to worry about at the moment.
My two learning things I would suggest if you want to do things at home:
1) Zearn for math. My two did this for 30 minutes a day over the summer. My one with an intense IEP went from scoring several months behind grade at the end of 1st level to several months ahead at the beginning of 2nd. My leukemia child was on grade level ending K (even though he barely went) and started 1st so far ahead his teacher asked us to stop doing the extra work.
2) Teach your child to read in 100 easy lessons. It is literally 10-15 minutes a day and your kid will be able to read at an end of first grade level by the end. We did this right before my son got sick and stopped at lesson 65 or so and he was already reading short books before entering kindergarten.
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u/ShortTadpole5192 Mar 01 '26
My son was 6 when he was diagnosed with the same and we just finished treatment in January. In terms of things that are helpful….I think you are right on with the port shirt. There are not for profits that sell them and your child life person might even have a stash of them that they could give you. You will have to cover the port with numbing cream before each appointment…I know people say you can use the glad press n seal, but I would buy a box of the tegaderm patches off of Amazon. They aren’t too expensive when you buy a big box.
In terms of school, both our medical team and our family was on the same page about keeping life as normal as possible for our kiddo. I sent my kid to school during the majority of induction. He also wanted to go to school, so it was not hard. The school was great and worked with us to tell us if there were sick kids in his class and we then made a judgment call about whether to keep him at home or not. We did ok and did not end up back in the hospital. I know others on this thread might not agree with me on sending to school during induction. So you will need to do what’s right for your kiddo and your family. While there are definitely some times when he needed to stay home, we pushed school and sports as much as possible during the entire treatment.
Melatonin helped us out during days when he couldn’t get to sleep for whatever reason.
Induction was hard because of the steroids and constant hunger. We didn’t try to regulate too much and whatever weight was gained just came off later.
Delayed intensification sucks hard core. When you get to that stage, come back for more words of advice.
You belong to the club no one wants to be a part of, but you will be amazed at the community that is out there. Take one day at a time. It is no doubt a hard journey, but try to focus on the face that this type of cancer usually has a good outcome. Best of luck!
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u/Beginning_Lunch_9113 Mar 11 '26
My daughter was diagnosed a few months before her 5th birthday.
First I hope at this point you are almost done with the hospital portion of induction.
Five is still young enough that I would mostly just focus on reading things she is interested in and done basic math.
If you live 3 hours from the hospital make a good plan of where to take your daughter when she gets fevers. You will likely be going there a dozen times to get iv antibiotics. To this point check for fevers and if it gets to the number your doctor told you go to the hospital. You really want to get antibiotics started within a few hours.
The steroid tastes awful, it would take hours to get her to eat it with regular applesauce. I tried so many foods, eventually settled on cinnamon applesauce it was so so helpful.
Train your daughter drink a lot of water ASAP, it will be very helpful later in treatment.
Make sure you have Zofran and you know how much has already been given. A few times after LP’s she had really harsh chemo and by later at night she was over the zofran limit and vomiting about every 20 minutes for 10 plus hours.
Make sure your girls get a chance to play together as much as possible as your family will be isolating a lot during active treatment.
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u/Obvious-Medicine-394 Apr 18 '26
My 6 year old daughter was diagnosed yesterday with ALL. Trying to get her lab numbers up with blood transfusions to start treatment Monday. Very scary.
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u/NeuroSam Mar 01 '26
Hi friend ♥️ my 8 year old diagnosed on 01/16/26 just finished induction and started consolidation last week. The time you’re in right now is the most confusing, scariest, get-through-any-way-you-can, kind of time. Our children’s hospital / pediatric oncology team is similarly amazing, they gave us a TV with a bunch of movies for our room and a video game console. My little was very sick during induction and had the whole gamut of side effects / unexpected rollercoaster rides and we ended up being admitted for almost all of induction. Every kid is different - I know my son would NOT have wanted me to decorate the hospital space because to him that would have felt more permanent. If it was my daughter on the other hand, she probably would have wanted to make artwork together to hang it everywhere 😅. My son was sleeping a lot and just wanted me near him, so we didn’t really “do” much for a long period of time during induction.
My boy’s port is more on his side than his chest, so the zip shirts don’t really work for him, he prefers to pull it up so they can access him. He actually really enjoys going to medical daycare and getting his chemo now because he knows he’s going home afterwards, and everyone is super nice to him and gives him stuff (lol).
My goal was to get through induction. I didn’t even start thinking about anything past induction until we had those day 29 MRD biopsy results (he was MRD negative 🎉). I recognize that is a luxury many do not have; my husband and I both have flexible jobs and he was able to care for our 6 y/o daughter while I stayed in hospital with my son. I was support person, liaison, advocate, and learner during those few weeks. I am only now starting to incorporate learning back into our days, as I’m off for the next few months until we (hopefully) hit maintenance chemo.
My heart is with you, you’re in the thick of it. ♥️ it gets better, kids are insanely resilient and watching my son go through this has made me aware of a strength he has that I didn’t even know existed.
Please don’t hesitate to DM me, I haven’t connected with any other families yet (because again, taking things one step at a time has preserved my sanity). Also check to see if you have a Candlelighters association near you - they have been incredible support.