My 8 year old son was diagnosed in March with pre-B cell ALL, high risk. We are currently in our third week of Consolidation, and after 2 weeks in the hospital after the initial diagnosis, we have had one other "emergency" 3 day hospital stay because of a fever. I understand every child is different - depending on how they react to the treatments, etc., but I want to use my family medical leave time (3 months) wisely, and can't help but feel that it is just going to get tougher. For example, looking ahead to IM, I see four scheduled hospital stays for high dose MTX, and was told to expect to stay in the hospital for 4 days each time (16 days in those 2 months scheduled, and that doesn't include other things coming up).
For those that are further along and looking back, where would you recommend taking extended time off from work versus trying to juggle things (using vacation days, etc.) Or is this impossible to plan?
First of all, sorry you had to find your way here. My daughter was diagnosed with high risk pre-B ALL 7/30/10 and like your son she spent the first two weeks inpatient. She had the Capizzi (spelling?) methotrexate so didn't have to be hospitalized for the 24 hour infusion, or however the other one is delivered.
For us the first 6 weeks of treatment were absolutely the worst. We had short inpatient stays (3 or 4 days) due to fever at the end of September, and two more before we hit long term maintenance. We even had a short stay about 4 months into LTM. I think it would be really hard to plan how to take your leave, unfortunately. It sounds like there are definite times you'll need to be gone for the high dose MTX, but other than that it is probably luck of the draw.
What will you do for child care when you are at work? Lauren hardly went to school at all during frontline treatment either because her counts were so low her immune system was zip to nil; or she just felt like crap. As an outsider looking in I would think what your plans are for care when you are working are.
I used to say I learned not to make any plans. Sigh. I hope treatment goes as smoothly as possible for you! Good luck.
I should have added that for the most part I can work from home (usually some travel, but right now I have others covering the travel part) - that is the great part of my job. The not so great part is that taking a few days here and there just doesn't work as it is very deadline intense - so really my work would prefer I take a few months of leave at a time if needed. I am noticing my son has days where he sleeps until the afternoon, and then really struggles to get out of bed at all because he feels so lousy, yet other days he is almost bouncing around the house (those days are become less frequent). We were told no school for at least 9 months - is that not normal?
Believe it or not, I didn't take any leave at all until well into his second year of treatment when I was totally burnt out. I worked from the hospital for his 2-week inpatient stay at onset of treatment. I also was able to work from home throughout his treatment. He was home, and home schooled for most of first grade until the beginning of maintenance. I wish he could have gone back to school earlier. It was isolating for him being out of school. I worked from the hospital when he had appointments or was inpatient, and found I was able to juggle work and the appointments really well. Most of my work is laptop and phone so I would literally be on my computer or phone in his hospital room while he was recovering from his spinals or in the clinic getting chemo or a blood transfusion or in the ER waiting for platelets. I'm a single mom too so there were times when I wish I had an extra pair of hands, but I managed. I kept thinking I would take family leave, then kept putting it off. I did eventually quit for a year. But then they asked me back. I think if you are able to find pockets of time to rest, then you can hold on to your leave. I was able to have family and friends give me free time, or help with laundry or food shopping or cooking. Helped me breathe and last a lot longer than I could have without help. The thing with family leave is that it's unpaid, right? I really wanted to keep earning if I could. I think you take the leave when YOU can't go another step without a rest. And you'll know when you get to that point. There is really no time that's better than the other to take it because it's such a long haul, and you never know what's around the corner. But I ran out of steam during the second year of LTM. I wished I had taken my break during the first year of LTM. I think I wouldn't have ended up taking a whole year off!
I think every doc has a different recommendation about school, but 9 months sounds reasonable. Lauren was diagnosed two weeks before the start of school and the onc in Indianapolis said we could pretty much count on her missing the school year.
The oncs in Kansas City are all about kids doing as much as they possibly can, but until she hit LTM in April it was just a day here and there. Her ANC was too low much of the time, she was having gi issues, or just was tired and didn't feel well. When she did go to school it was only half a day because she was too tired. She worked her way up to full days just in time for school year to end. And part of that would depend on your comfort level with the school. We still have school nurses, and Lauren is in special ed so she has more than the average number of adults watching out for her.
The no school and being told she would lose all her hair were really hard for me to wrap my mind around after diagnosis when we sat down with the onc, but once we were really into it I was OK with it and enjoyed my time with her as much as possible. We definitely got even closer than we were before.
And it seemed like just when I thought I could predict a pattern with her as far as how the various drugs affected her it would change. It seemed like she almost got used to some drugs as she went along and then became more sensitive to others. Could always count on vincristine to mess with her gi tract, though!
I'd plan 5 days for each of the HD MTX course. If son clears the MTX early, then good, but if not, then you could use the extra days.
Other than that, you cannot really plan whether your son will have fever or have other needs. We had 2 fever scares and had to go in patient 3 days each time. Watch your protocol for Cytarabine/Ara-c as they tend to produce fever scares / elevated temperatures.
Do you need to take the medical leave in one big chunk or can you take the leave 1 or 2 days at a time?
Thanks for the reply. I think you are right about the ARA-C - they think that may have been what caused the last fever scare, as there was no infection, but again who knows. My guess is besides the scheduled hospital stays, I should probably give up trying to predict or plan anything else (especially since I have been pouring through a lot of the older posts in this forum, and everyone seems to have a different experience!) How does anyone work through this?
My son didn't go to school for all of frontline treatment, and even now, easily misses 20%. They've had a hard time stabilizing his counts in LTM (he's 13 and I'm under the impression that the older kids can be harder to stabilize, but I'm not sure). Also, the steroids are murder on him, so I let him stay home for some or all of his pulse, getting his homework done from home and me working from home, which I can do with part of my job. I've heard stories about kids who attend school DURING frontline, but that wasn't my kid. Also, my son has a slightly different diagnosis (precursor T-cell lymphoblastic lymphoma) but is on a leukemia protocol ALL0434 standard risk arm A with Capizzi escalating, not HD-MTX. We seriously hated on the ARA-C fevers and struggled mightily with debilitating nausea and dehydration even on meds. I'm not sure I could predict it, but the IM was hard on us (which was a surprise, since I thought it would be easy) and the DI was easier (except for the last three weeks which we spent in the big house). It sure is tough to plan, and that's hard to take for a planner like me. I hope you have an easy frontline treatment.
Hi - sorry that you're here...my daughter was Dx in June of 2011, so we just finished frontline treatment and started maintenance. If you're able to work from home and the hospital, then you may not need to take any leave. I worked the entire treatment time, but I work from home exclusively, so working during hospital stays was not a big deal. Even during HD Methotrexate stays - for us, it was 24hours chemo, then 5-6 days of doing nothing, but she had delayed clearance so we had to stay. I always felt like when we were in-patient it was pretty easy to work - long days with nothing to do - even if your child isn't feeling their best, you have the nursing support, meds, and the fun child life staff who help occupy the kids. My daughter has been on homebound school the entire year, our county provided us a teacher who comes to our home twice a week - it has been wonderful. The days where I really didn't work at all were the weekly clinic appointments - but I'm not sure if you can use FMLA for "one" day a week .....we've had 2-3 unexpected hospital stays due to fever, and each of those were around 10-12 days in duration. But again, working was not a problem ...just long days with nothing to do ....my daughter was 12 at Dx (now 13) -- also HR Pre-B cell ALL..... hope this helps a little!
For Aj, who WAS on treatment for tcell ALL, consolidation was by far the worst for us. DI was a close second only because he looked like he was going through treatment. Bald, sunken eyes, ashy skin and skinny....5''7" and 125 pounds and had no appetitite. He wasn't in school during consolidation. He tried, but he was just too sick and the chemo was hard on him. DI hit during the summer. By the beginning of the school year, he had a buzz cut and was starting to put the weight back on! Good luck to you and your child! It's a long road, but I can't believe Aj is off treatment now for 2 months and loving it!! Starting college in the fall and playing soccer!
I would say that it is different for each parent. My daughter was diagnosed in December 2009 with High Risk T Cell Leukemia. I worked from diagnosis until 6 months later when she went into BMT. For us we had community assistance so we could still afford to live. Up until BMT she was in the hospital off and on a lot. Her body did not want to accept the chemo so she always had a fever. I did a lot of work out of the hospital. I was always driving to and from the hospital.
If your work is willing to work with you I recomend doing that. You really never know when or if you will need that time. Everyone is different. My husband and I have already made a decision that if our daughters leukemia comes back I will not be working.... but we also know that if it comes back we don't have many options because of the way she has responded before.
Thanks for all of the input on this! I think I will plan on 6-8 weeks off during IM to cover the hospital stays we know of. We're not even half way through front line and I'm feeling completely burned out, and can't imagine trying to work through IM. I can't take a longer leave, so hope this will be enough!