My 14 year old son has just been diagnosed after biopsy.
Originally he had a small raised single under arm lymph node on and off for a few months, but just before Xmas it seemed to increase a lot and become tender, so took him to GP who offered "wait and watch" or refer to hospital, I opted for the latter. We were seen the following day but physical examination confirmed the single node and blood tests revealed nothing.
But a follow-up scan of the underarm node 5 weeks later on 27 January also revealed concerns with another swollen node in his neck nearby on his collar bone. Both about 3-5 cms. Small nodes less than 1cm also in groin, and a small one in chest according to CT scan. NO abdominal adenothapy (?) found on CT scan, though spleen enlarged with echoic (?) lesions. Biopsy confirmed it was Hodgkin's Lymphoma when we saw specialist in the week, but I am worried sick to the point I cannot function easily.
I guess its clearly at least Grade 3 as nodes now swollen on both sides of diaphragm, though the specialist did not tell me which stage it is, only that she feels we have a "very good chance of curing it". But my son was present so perhaps she was bound to keep us positive.
Awaiting PET scan now which could reveal it is at an even worse stage (Stage 4) if it picks up more cancer, which PET scans often do.
He has been referred to Birmingham Children's Hospital - we have an appointment next week - where he will get excellent treatment I am sure, but I feel everything is so slow, and over the last month it seems to have changed from perhaps a Grade 1 (single node underarm) to potential Grade 4.
It is terrible to watch as he seemed so well, loving his football etc, but now has a nasty cough and cold which may or may not be related. He still seems well apart from the cough and cold.
I know HL in some ways is a good cancer to get (if you can ever say that), but Stage 3 or 4 prognosis is often reported as relatively poor. Some people say that nearly all teenage HL can be cured or put in remission, only that the Stage will dictate length of chemo these days, not so much prognosis. Other reports suggest 95% of teenage HL have a 5-year survival rate, overall. Anyone else have experience of Stage 3 or 4 HL in children?
I just wish I could swap places with him, I feel so low - if someone literally offered me the choice of being decapitated right now to free him of it, I would do it with absolutely no hesitation. (PS I am not suicidal, just feel so low). I can't show weakness or have a cry as he is with me all the time, yet the future for him just feels so grim right now.
Good morning Nick, some progress is being made and with a plan in place this will move forward.
Yes, we can all totally relate to the night time mind tornados. Everyone will have used various ways of turning this noise down, for me it was a note book next to the bed for me. In the early days, when I would wake up at silly-o'clock with thoughts and questions I gave up concentrating on them as my brain could not deal with them so put them on paper and parked them as best as I could. Then the following day I would think through the thoughts or talk to someone about the questions.
You can not escape the nightmare but you can manage it as best as you can. Your sons team will look after him, but you need to look after each other. The brain requires 20% of our daily energy requirements to function, add stress that requirement goes up to 40%, then add cancer the percentage can go way up and fatigue will start to take over. So it is very important for the family to look after each other and to look for family and friends to step up to the mark and help out as best as they can.
Percentage figures are never great when they are given..... but from my personal experience 85% is a very good foundation to move this all forward with.
Yes Nick, this will be the hard one.
From working with this age group most my working life I found them very switched on, well informed and can see through a lot of the screens that are put up by us grown ups and the people who could see through me the best were my daughters. I was still teaching during the first 14 years of my condition and the students totally understood what was going on and were very supportive.
Once treatment starts your little man is going to be in an environment with others in the same boat so they will talk and share their thoughts and nothing will be hidden - teens will be teens. So a good open, but at times 'need to know' communication will be required to help you all to navigate this.
Most cancer patients are still actually the person they were before the diagnosis and it tends to be the older patients that will have the harder time as they overthink the whole thing. Teens will take it as it comes and some of the most inspirational blood cancer patients I have meet are the kids and teens.
Hence the reason I highlighted the need to ensure that the family are supported as best as can be. I am sure that the hospital can give you information about support groups as they are dealing with this all the time. Again from my experience, sitting with others (parents) on the same journey can help take the mystery and unknown out of this rollercoaster.
You are doing great.
