Hi All
I have the below message from Alfies Mum :) Please take a moment to read - Shelley Wells x
So I can’t remember when I last gave you update on Alfie.
t’s been a busy few months with Alfie being diagnosed with a relapse. Alfie has been signed up to a trial called the minivan trial.
The trial is made up of 3 different treatments. 1st is MIBG therapy. 2nd is an antibody called Nivolumab and 3rd is another Antibody called Anti ga2.
The MIGB therapy is done at UCLH. During this treatment he will spend a week in isolation at UCLH in a lead lined room the stuff there they inject him with is highly radioactive. Once he’s is discharged he will go at stay at his nans house until it’s safe for him to return home. His levels will be monitored regularly so we can know when it is safe for him to return home and be near his little brothers He will have a 2nd round of Mibg therapy exactly 1 week after ha had the first. The same procedure will apply as on the first another week in isolation. Once discharged he will again have his levels monitored so we know when it’s safe for him to come home and be near his brothers. This treatment could affect his blood counts so they will be taking regular bloods to keep an eye on any levels dropping. Transfusions could be needed over the next few weeks. �
For the 2nd and 3rd we will transfer to Southampton.
Nivolumab is given as an outpatient it’s an hour infusion. This is given every two weeks.
Anti GD2 will be given an infusion over 10 days this will require an inpatient stay for the nurse to monitor him very closely as this cause cause some not very nice side effects. This treatment is every 5 weeks.�
Alfie has just completed week 1 of the Mibg therapy, he’s been discharged earlier today, he is at his nanas being well looked after and I’m home after a very tiring week that has been split between myself and Alfies dad. We take It it turns to make it easier on Alfie two little brothers. Before it all began I was dreading how we was going to cope, emotionally and mentally. But I’m glad to say we survived the first week of being back on this journey, back fighting a battle. Over o Facebook we have had heaps and heaps of support. But I thought it was time that I gave you all an update.��
I also forgot to mention that whilst Alfie was in the isolation room he sat his English GCSE on Monday and Wednesday. He makes me so proud my heart busts with Pride❤️