Counselling for 9 year old, Dad recently diagnosed with AML

Hi Durpy Pug and welcome to this corner of the Macmillan Online Community but sorry that you had to find us and especially sorry to hear about your husbands AML diagnosis.

I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have AML but have lived and been treated with my rare type of incurable but treatable skin Non Hodgkin’s Lymphoma for over 22 years now.

The initial shock of a blood cancer in the family is all encompassing as it will effect everyone in different ways.

But once treatment starts and a plan for a way forward is put in place the whirlwind tends to calm down. The word cancer catches everyone in its headlights but some types of cancers are very treatable with good results and blood cancers are indeed in this wide group.

I have older family but our 4 granddaughters 9, 7, 6 and 4 and they know nothing different, grandad can be poorly from time to time but they just go into Doctor mode and fuss around me.

I have spent over a 120 days in hospital over their short years, although not in Covid times. I did send two long months in isolation having my two Stem Cell Transplants so they were not allowed in to see me..... but FaceTime, lots of pictures delivered were a lifeline.

There are a few members in the AML group with children so let’s see them pick up your post.

Some stuff to check out. Macmillan have this information on understanding childrens' reactions and also this on talking to children when an adult has cancer. You can also download, or order a paper copy, of this booklet.

It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available.

This service can give lots of cancer information so do ask them about professional counselling in your area, they will provide support and financial guidance as cancer is rather a challenge on the family income..... or just a listening ear.

We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.

From talking with others in the wider community groups family counselling is out there but in normal times there is a long waiting list but in Covid times that wait is much longer 

Can I recommend you check out for a local Maggie’s Centre as these folks are amazing and do provide support for all the family. A lot of their services moved onto online video support during Covid times. 

But our local Maggie’s (Inverness) are beginning to open up again. You may not have a centre on your doorstep but up in the Highlands it’s not unusual for families to do a 4 hour round trip just for shopping so doing the same for cancer support is often done regularly.

Where do you live?...... what hospital is his treatment based at? I ask these questions as members my look in from the same area or hospital and can have inside knowledge.

I will stop and allow you to work through what I have said but do come back at any time as I will do my very best to help you out.

We actually have 3 of our granddaughters staying for the first time in over 9 months as our restrictions did not allow them to visit our area 

((hugs))

Many thanks for this information it’s very helpful. We live near Leeds and I have just searched and there is a Maggie’s group at St James. My husband has just been referred there for an initial pre-assessment for Stem Cell Therapy. 
As you say, the isolation periods are very hard, and we have only done one so far with the first round of chemo.  It’s really encouraging to hear of many success stories of SCT. Amazing how far medical science has come over the last 20 years.

many thanks for taking the time to reply and I hope you have enjoyed some well deserved family time with your grandchildren 

Hi again and good that you found the info helpful. I have attended our local Maggie’s on and off for over 4 years and our monthly Heamatology Support Group (now on Zoom) is excellent and at the moment all people who have been through SCT.

As I said I have had 2 Allo (donor) SCTs and basically saved my life - hit my community name to see my story.

SCT is an unusual, challenging and fascinating treatment and it’s important to know as much as possible.

We do have a dedicated SCT group where people  from various blood cancer support each other on the SCT journey. Follow this link Stem cell transplant, join the group and have a look at the posts and when you are ready put up your own post.

Always around to help.

I have just read your story. What an inspirational story you have! I can only imagine how bleak it must of felt at times but clearly you never gave up and have retained your sense of humour.  I am so pleased I read it, it has given me hope for the future and given me a kick up the backside to get into gear and help my husband fight this thing.

have a great day

Hi again

Good that you found my story helpful as some find it not so which I totally understand

Over the 22 years we always held onto a small but challenging phrase our amazing Specialists Nurse Consultant said “Mike and Fiona - there is always hope until there is none” and she was spot on.

We are having a truly great day as this is the weekend we have all our granddaughters together for the first time in 9 months with 3 of them not seen in 9 months....... the other amazing thing is that 7 years ago today I started my conditioning for my first Allo SCT with the knowledge that if the plan did not work I may have only meet two of them

I am around here and on the SCT Group to walk this with you xx

Hi, hope you are well? sorry to bother you again. Just a quick question and wondered if you could offer any advice. My husband was diagnosed with AML in April. He has had two rounds of chemo at present. After the first round he achieved remission which was amazing. We were told because of his mutations he is st risk of it coming back and so needs a stem cell transplant. He has been home for 3 weeks after round 2 of chemo and today we have gone in as outpatients for him to have another bone marrow biopsy and his bloods taken. We have been told that his bloods are being sent off to london. We live in Leeds and so wondered if you know why this batch of bloods might be sent off to london? I have read something about looking for morphological remission? Could this be what it is for?  It’s just been unnerving.

many thanks if you can offer any insight

Hi again Durpy Pug, so good to hear that your husband achieved remission quickly and yes it is not that unusual to have to go on to have a Stem Cell Transplant (SCT) to provide long term remission.

You may remember from my profile that I also had to have an Allo (donor) SCT….. in the end I had two.

Getting ready for SCT requires a lot of Specialist tests and often these need to be sent to other test centres who are equipped to do these.

I am in Inverness, my SCT Unit is in Glasgow but some tests were done in London….. so don’t read into this.

Blood cancers are complicated, SCT is complicated so every little detail is looked at before this can move forward.

Has he been told what type of SCT they are like looking at……. an Auto (Autologous) SCT using his own cancer clean cells or an Allo (Allogeneic) SCT using cells from a matched donor? These two processes are much the same but the Allo SCT (this is what I had) being seen as the more demanding.

Do join our dedicated Stem cell transplant support group as you will connect with others who understand the SCT rollercoaster. So put up a post and introduce yourself and your husband and unfortunately you won’t escape me as I help out in that group 

Always happy to help as best as I can ((hugs))

Hi Durpy Pug

Normally with AML your biopsy is sent to Guys in London where they do very sensitive testing for mutations. Mine was the NPM 1 mutation which is easy to spot if it’s lurking deep down. Chances are if he was in remission he will still be in remission after the last chemo. I had my transplant 26 months ago ,it’s been a tough journey at times but I am feeling good now. Hope all continues smoothly for your husband x

Thanks so much for the replies. It’s so nice to hear when people are enjoying life again after this rollercoaster nightmare of dealing with blood cancer. 
That’s for putting my mind at rest, we just see different people everytime there is a different appointment and the information isn’t always clear or forthcoming. 

can I ask how you found the initial stem cell transplant consultation. We found it so doom and gloom and hard to bounce back from.

Hi Durpy Pug I have just seen your post and as a two time Allo SCT veteran thought I would give you my thoughts about the SCT ‘Talk’

As I said I had two Allo SCTs so two ‘Talks’ with my SCT teams.

The first one was indeed challenging and yes, very scary and a lot of the info went over our heads. We were like rabbits caught in head lights as our attention was often focused on the bad things that could happen and we totally missed the good parts.

My first Allo SCT did not work so going through our second ‘Talk’ was no where near as scary as I had the T-Shirt…… apart from “Mike if this does not work we don’t have much tools left in the box”

The ‘Talk’ is where your team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving your tram permission to take you to the point of being open to life threatening infections and side effects……. then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.

The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided.the main thing people talk about was the boredom