14 year old with ALL type C

[sioba]

Hi All,
My 14 year old on has just been diagnosed with Acute Lymphoblastic Leukemia Type B (not C!). He had an op yesterday to put in a port-a-cath, take bone marrow and do a lumbar puncture. He will start treatment today. He is still in a lot of pain from the op, struggling to get out of bed, finding any movement hard, needing more pain relief than the nurses expected. All the medical professionals are encouraging him to move so he is trying to. Any experience with this is this typical in this situation? He normally has a relatively high pain threshold.

I'm really sorry to hear that, @sioba . You must all be in shock as well as the difficulty of dealing with hospitals and the start of treatment. My DS doesn't have the same type of cancer, but has been through the ringer in terms of surgeries, radiation and chemo. What I would say from our personal experience is that you and your child are the experts now, on his pain and what relieves it, on his mobility and the side effects of surgeries, hospital stays and treatment. And you will have to be his advocate from this point on.

Everyone reacts differently to everything, but my DS's experience was that the lumbar puncture was an incredibly painful procedure that caused constant screaming agony for hours afterwards (even with morphine) and, although he stopped screaming, constant unbearable pain for at least 3 days and extreme pain for a couple of weeks afterwards. It gradually got better after that. Our experience is that Drs will NEVER admit a procedure is painful, or that recovery is long and horrific. Who knows why - maybe it makes them feel better to pretend, or maybe lack of personal experience means they haven't a clue and just parrot what they've heard other Drs days.

I think your poor DS's reaction is normal. It may be one thing or it may be the combination that is causing pain - his cancer, surgery, plus a very painful lumbar puncture.

DS had a shunt, hickmann line and PEG inserted. The shunt still causes him pain over a year later and he was in pain from the hickmann line and PEG surgery for a few months.

I hope your son's pain improves soon and someone with more relevant experience comes along soon to give their advice. X

Hi @sioba ,
Sorry to hear of your son’s diagnosis. My DS is nearing the end of treatment for ALL B Cell so am happy to answer any questions/be a listening ear on this journey.
DS struggled with pain at his Hickman line site for a few days after his OP to have it fitted so this doesn’t sound unusual in that regard. Has he had any Vincristine yet in his treatment? That can cause neuropathy and mobility problems so could be an additional factor in him not wanting to be up and about.

Hi All,

Thank you so much for your replies, he is lot improved since yesterday. He has now started his treatment - steroids and chemo (including vincristine). TeamLoganHuntzberger how is your DS doing? Where were you treated? We’ll be in hospital until the middle of next week. I’m told the first month is the worst? We’re on the ALLTogether protocol. Was there anything that helped your son through?

I’m glad to hear he has improved since yesterday.
we are under Addenbrooks in Cambridge with shared care at our local hospital, also on AllTogether. My DS was just 6 in Nov 22 at Diagnosis and we now only have 5 months left in maintenance.
The first month was intense in terms of back and forth to hospital multiple times a week (2.5 hours each way to Addenbrooks for us) and watching them visually change so much but we have been very lucky throughout that he hasn’t had lots of side effects really.
if you want to send me a DM I’m very happy to chat all stages of AllTogether or anything else - it’s a long tough road and talking has really helped me.