When my son was just 5 years old i found a lump in his neck, i was told it was probably nothing and it would go away on its own. I was worried but trusted my sons GP. After 3 moths the lump was getting bigger so he was sent to the ENT department at the ipswich hospital. The consultant sent Joshua for a sonogram and blood tests and put him on strong antibiotics. The bloods all came back as 'normal' but the lump (cervical lymphadenopathy) I could see and feel was way bigger than it should be and needed to be taken out.  The operation booked in for 2months later. The removal of the largest lump was a total success and they left the 3 smaller lumps behind , Joshua was very brave i could not have been more proud. We waited 10 long days for the results of the biopsy. I thanked my lucky stars that the lump was not cancer but little did i know that this was not over.

6 weeks after the operation Joshua went back to the consultant for his review, the nurse took Joshua out of the room so the consultant could talk to me alone. I don't remember all that he said, i must of shut off, he did explain that even though the lump was not cancer it didn't answer why he had the lumps and he would need more tests to get to the bottom of it.

 For 2 years Joshua has scans and blood tests every 3 months. The remanding 3 lumps got no bigger (or smaller) and the bloods all came back normal other than testing positive for epstein-barr. So Joshua was discharged from the hospitals care pending no changes.

 A year later Joshua got really poorly out of the blue and was admitted to hospital with a temp of 42 that they couldn't bring down, 4days of IV antibiotics Joshua was well enough to come home. his blood tests showed that he just has tonsillitis and his body hadn't reacted well to it.

 In 2013 Joshua started to get night sweats, fatigue, non specific fevers and another large node on the left side of his neck. Back to the hospital, another year of blood tests and scans. Bloods kept coming back as normal and his neck scan showed 6 new lumps (9 in total). 

Finally in  november2014 we got referred to addenbrooks hospital. Terrified and relieved all at the same time Joshua had his emergency appointment only 2weeks later. The dr at addenbrooks requested 2 simple blood tests that ipswich hadn't done over 6 years of testing (wasn't seen as necessary). One of the tests was for HIV and the other was for ALPS. We were told that both were highly unlikely but it was best to rule them out. We left the hospital hopeful and reassured that Josh was just a lumpy child and it was nothing to worry about. 14 days later i got "THE CALL", Joshua was tested positive for ALPS. I had already ready everything possible about ALPS and NHL so had convinced myself that that meant Joshua was going to die. I kept strong for my other children but couldn't sleep or eat for weeks, scared to close my eyes or stop long enough to let myself think of the worst. Thankfully we only had to wait 10 days before going back to see the head of immunology at addenbrooks. The Dr was fantastic, she told me how it was straight down the line. Joshua was sent for a full set of tests over 6 months at both addenbrooks and ipswich hospital. All the tests came back as normal as could be expected, he still has persistent cervical lymphadenopathy and his DN T cells elevated another 3.4% but he tends to be well in himself. Joshua now has repeat ALPS screen and vitamin B12, serum IL10 lys, functional Aas, ESR, ANA, CXR tests along with scans and X-rays. At the moment as long as nothing more changes Joshua will not need any treatment for ALPS or NHL and we are all hopeful it won't come to it but know we have all the support if it does. Joshua is the best son a mother could ask for, he is my hero. Never once has Joshua complained , he is so brave and strong and if anyone can come through this its him.  (i will add more to Joshua's story when i can keep it together long enough)

lilly

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