Hey all, I’m Holly. On Christmas Day we were told that our 3 year old son Fox has Leukemia. We were taken to Bristol, 2 hours from home for full diagnosis. He has APL, being rare he’s having all his treatment in Bristol away from his twin sister Winter. Iv only managed to find one other family who’ve dealt with APL, it’s rare in such a young child. He’s having ATRA and Arsenic Trioxide chemotherapy. Has anyone else experienced this? X
Hello Holly and welcome to the forum. I do not have any knowledge about APL, but I do realise that you must be going through a tough time dealing with the diagnosis, the treatment your child is undergoing, and the fact that your family is having to be separated. I hope you are all getting plenty of support, both practical and emotional. The support line is there if you need to talk to someone not directly involved with the family. There are also posts about caring for a child with blood cancer (click on the 3 lines on the right and sub themes are shown.) Take care of yourself too. I hope the prognosis is positive and that you will keep us updated. Best wishes, Louise
Hi Holly, a great big welcome to this community forum. I do not have any knowledge of APL and I cannot imagine what you and your family have been going through over the last 5 weeks. However, what I have noticed is that we often seem to share similar fears, thoughts and emotions. When I was first diagnosed I just went into shock and I felt as if I was in a bubble. My world was shattered. I felt I was the only person in the world in my position and I just felt on a treadmill going through the motions of appointments etc. I didn’t ask any questions as I didn’t know what to ask. All my fears and thoughts just whirred around in my head. You have also got all the emotions and feelings of being a mother and trying to keep all the plates spinning. How have you been?
Hi @HollyParkin I echo in @Erica and @Pisces56 in warmly welcoming you to the Online Community! I’m Su, and am one of the Support Services Officers here at Bloodwise. I’m so sorry to hear about your lovely son, Fox, and I can only imagine what a difficult time this must be for you and your family. How have you all been doing, and how have you found supporting Fox through his treatment? It sounds like it has also been really tricky for you to find and reach out to other families going through a similar and relatable situation to you.
Thank you so much again for being so open in sharing your experiencing, Holly, please feel free to talk through anything on your mind- we’re always here.
Hi. Sorry to read this news. My son Andrew was diagnosed with ALL in 2012 aged 3… so I know mum to mum what it is like even though the protocol’s will be different. Being away from the sibling is so hard - Andrew’s sister was 5 when he was diagnosed and they have no idea what is going on! Melody
Great to hear from you, Melody, yes, you cannot beat the Mum to Mum response, the emotions and practicalities are different, but we are all here to support each other. Are there any other parents that can share their practicalities, experiences, thoughts and feelings here?
Hi Holly, I’m so sorry to hear your son has been diagnosed with APL. Being torn apart from family and siblings I found to be one the hardest things during treatment. My son was diagnosed in 2016 with ALL at the age of 10. Whilst I don’t know anything about APL I just wanted to reach out. It can be so lonely and isolating when your child is diagnosed. We live in Bournemouth and received shared care in Southampton and Poole. If I can be any help in anyway, please do not hesitate to get in touch. Sending you love and strength Kerry
Hi Holly, another mum here. My son was diagnosed in 2015 with ALL at the age of 2. He’s now 17 months off treatment. I’m so sorry to hear about Fox, I hope he is doing as well as can be expected. It’s so difficult being separated, but hopefully there will be times during his treatment when you can all be together. I don’t have any experience of APL, but I imagine many of the emotions you are feeling are familiar to any parent when their child is diagnosed, I get it and you are not alone. Please keep sharing and let me know if there is anything I can do to help xx
Hi Kerry, a very warm welcome to our community form, it sounds as if you have felt very isolated as I think many of us have felt. This forum is as much for you as it is for your son. I am sure you have gone through similar fears, thoughts and feelings as your son and family, plus you have had the maternal feelings and trying to keep the whole family ticking over and supported. I thought your post response to Holly was so lovely, thoughtful and supportive. How did each of you, your son and family members cope emotionally and practically because I have found often each family member copes differently and that there is no right or wrong?
Good morning everyone, hope all is well with everyone?
It has been really lovely and positive to read through such supportive comments on this thread, thank you so much everyone for contributing
@HollyParkin, just thought I would check in with you, and find out how you are? I hope Fox and Winter are doing ok as well?
We are always here if you want to talk,
Hi Holly ,I know I’m a bit late with this post . Just wondering how your son is . I was 57 when I was diagnosed with APL in 2017 , I found it a bit of a long road but I am feeling fine now .
Hi @Gord1 a great big welcome and so glad that you have joined our forum family.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003 at 53 yrs old and I manage the symptoms I was diagnosed with on a daily basis, the main one is fatigue.
I look forward to hearing more about you.
Look after yourself