8 Year old ALL almost in Maintenance questions!

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guccimc's picture
guccimc
8 Year old ALL almost in Maintenance questions!

Good morning all, I am new to the site as we actually live, and my daughter is being treated, in Dubai, but are finding the support network here non existent and have many questions to someone who might of been through it?
My daughter was diagnosed in May with ALL and is almost to the point of the Maintenance phase.
My questions are;
Is it still possible to be frequently in the neutropenic state during this phase? Has anyone flown during this phase? We haven't traveled home (The Midlands) since diagnosed and obviously are missing family so much and would like to travel home for Christmas. Has anyone got a child of around the same age and has let them start school full time again? Finally, when can she start swimming again (has a port-a-cath) ? - it gets so hot here and can be unbearable if not able to!
Thanks so much, it has been a relief to finally find a group that are in similar situations.

Georgie's picture
Georgie

Hi my son is now in maintenance after being diagnosed in April 2015 with ALL, he also had a portacarh. Told it was fine to swim and he's been back to school since September, would have gone back in August if it hadn't been the holidays. He's doing well. But we still keep getting neutropenic but has been fine going to school as long as the rules are followed regarding food and keeping him out of school when there are outbreaks of chicken pox and measles. Hope you managed to come home for the holidays.Gx

guccimc's picture
guccimc

Thank you so much for contacting me. Its very reassuring to hear from someone who speaks the same language!
My daughter is also in maintenance now and is doing really well. Her hair has started to grow back and she has returned to school full time.
I'm still very nervous about her taking part in everything but we did make the trip home for Christmas and it was just magical! (mask on throughout the airport duration though!)
Is your son back to the cinema etc and all the things he enjoyed before?
I'm sure there will always be a worry but hopefully when we get to the end of this path, that might ease off a little!
I wish you and your son the best and please stay in touch with your progress! How old is he?
Regards,
Lisa x

Georgie's picture
Georgie

My son is 7 due to be 8 in May. The diagnose was a real shock for us as the doctor thought he had glandular fever to start with....after a collapse at school a second gp sent us to the children's hospitals a&e telling us to pack at the least an overnight bag. Since his diagnose we have managed Normal life with the help and support of family. We managed to juggle full-time work a 15 year-old and buying our first home it's not been easy but it amazing what you can achieve when you need to. I think managing leukaemia in a country where you don't speak the same language as the doctor must be frightening. How did/are you coping? So glad to hear you managed to see family for Christmas.xx

guccimc's picture
guccimc

Hi Georgie,
Thank you for your message and so glad to hear that you have great help and are managing the situation well. Is your son back to school now? Is he swimming and doing PE?
The hospital & healthcare here is really fantastic and i cannot complain at all but sometimes not having that number to call to speak to in 'mother tongue' for some reassurance or a simple question can be very hard. Its the silly things i worry about, the swimming, the flying home, taking a school bus etc etc
Amelia is doing so well and now has hair again! (which was a big hurdle for her when losing it). She is back at school and enjoying it, although she still feels quite nauseous alot and has muscle pain during her Dexa week.
Keep in touch!
Lisa x

guccimc's picture
guccimc

Georgie sorry!, For some reason i thought it was a different person messaging me so ignore the repeat questions! x

Georgie's picture
Georgie

Not to worry about repeated questions. My little one is on a trial so does not have dex, which means we font have the problems with tempers and feeling sick. But we have had to put treatment on hold as he's neutropenic again!

Rachael80's picture
Rachael80

Hi there my daughter Charlotte who is 3 will start maintenece for ALL from 7th Feb and I have similar questions.

I am living in Abu Dhabi and having treatment here presently

Georgie can you explain more about the dextra trial did this involve two weeks of dextran not 4 weeks during induction ?

Would love to talk more guccimc

Georgie's picture
Georgie

Hi Rachel. My lo treatment as part of UKALL 2011trial. 1st randomised Induction phase,Two weeks dex on regimen A. 2nd randomised phase maintenance without pulses. Information on the trial can be found at beatingbloodcancer.org.UK/UKALL2011links . The trial is to try and reduce side affects of treatment. To be honest I'm not one of those parents who read all the information, so I hope this helps.