I am so sorry @Sam87 , I am not sure what happened here or why your replies were flagged.
Our wonderful @Ceri_BloodCancerUK who keeps the forum running brilliantly is away for a few days so I will check with her when she is back and make sure this doesn’t happen again.
Please do keep posting, we are all here to support you.
Thinking of you
Fiona (support services nurse)
Hello,
Rosevin wrote a list on the 7th of May that is very helpful.
The things that were deff very important:
own pillow, the hospital ones are horrible. He can use their pillow covers.
soft toothbrush and mild toothpaste( I went for Oralive ,search if there’s something similar in your area). The methotrexate infusion is likely to cause mouth ulcers or mucositis and anything too mentholy will cause discomfort. (once the neutrophils go back to normal, the mouth will heal). Also, his platelets will drop which will cause the risk of bleeding more than usual, so better soft toothbrush to avoid this. Also no flossing while going through these periods of low neutrophils, platelets ( all normal side effects to chemo).
PICC line cover - look up on amazon - something waterproof, sadly I cannot post links here . The ones they give you at the hosp are not great. That line needs proper protection.
Avoid razor to shave, get an electric travel shaver, cordless.
After the first cycle he will lose his hair, so be prepared to shave his head or ask the nurses if they can arrange haircut. Again must be something safe to avoid any cuts. If it’s hot don’t bother with beanies, but deff make sure he has baseball cap for walking outside. The hair will grow back, remind him that it’s just temporary.
Otherwise, other bits…you will figure it out. I will write more if I remember other things.
Being 2h away is bad and good. I am 1h away by train from my husband, and I visit him twice a week bc I have a little toddler at home and I have to sort out life/work/child around the visits. It gave me respite to be honest, and it also allowed him to rest when I was not there. I know it’s different when it’s your child and it will probably be harder for you, but there is so much that he will have done throughout the day, so many checks and meds, that he won’t get bored or feel abandoned. Also, some meds will deff make him feel very sleepy, so he will spend a lot of time sleeping and resting.
Placing the PICC line and the intratechal infusions were some of the most annoying and scary parts, bc they are a bit intense, just knowing that needles go into your vein and your spine, but they are not painful. It’s just a weird feeling and hard to wrap your head around these things being done. The chemo meds he will receive iv and they are not scary, it’s just the side effects from the chemo that are annoying. But they are fully prepared with a cocktail of meds to counteract nausea, sickness, headaches etc My husband also needed 5 blood transfusions so far because his hemoglobin kept dropping, again expected side effect, and they are fully prepared to deal with this.
Hang in there, I will get back to you with more thoughts if I think of any, a lot to consider, but ask away, anything you need to know, just ask here.
Hang in there! xx
Hello,
Regarding this - being careful what you read - I 100% support this. This forum is great and I would listen to your dr/nurses team of course.
I found it paralysing at first, I cannot thank the Universe enough for Rosevin to be honest. I just found someone who has been through what I am going and she had a positive/happy story so I chose to stick with the dr and her for information re Burkitt’s. Because it’s so rare, I didn’t find many sources, and bc it’s so aggressive I anticipated I might find sad cases if I go on forums/fb pages specifically for Burkitt’s, so I actively stayed away and took it one day a the time.
At first I felt like I was hit by a truck, but every day things got better and I found relief in doing normal things, even reading to escape reality a bit.
I have a great therapist that suggested something on our first session when I was crying so much I could barely speak, when I was incredibly afraid of what might happen. And he told me to write on a piece of paper, at the top, my greatest fear. Then split the page in two. One one side write down Evidence for and on the other side evidence against this might happen. And then I realised that I didn’t have a lot of evidence the worst will happen, I didnt know what to write down other than that’a my fear. On the othe side I wrote things like : he is young, he is strong, he is healthy, he is positive, he was diagnosed fast, he is under medical care, he is under the best medical team, in the beat hospital, there is treatment for this, there is hope for cure. And every day I would add bits like : he responded well to the Rituximab, he had a blood transfusion, he is doing well x days on etc. And I would go over that page every day and kept repeating it out loud and things just got easier to process, to deal with and I could finally be strong for him. Which is something I hated when people ask of me at the beginning " you have to be strong for him" when I just wanted to curl up in bed and cry all day bc my whole world was falling apart… and it happened so fast…
So please, sit down, and write this down, I promise it will help you so much.
Lots of hugs x
Oh wow, you have helped me so much already. I agree with the " be strong for him comments" I am finding them very hard. When we first found out, I kept fainting, and then the stress gave me hives. I had absolutely no control over these body actions.
We have been told that there will be no outside time, maybe we misunderstood.
I am so sorry you are going through this too, and with a toddler. It would be very challenging in so many ways.
Have you got a chemo shortage in the UK?
Thank you so much. Finding people going through the same thing will be so helpful.
Hello,
Thank you! I did promise myself I will pay it forward so I am more than happy to help in any way possible.
I could not eat or sleep for a good few days, shaking randomly, hyperventilation… I never experienced this type of stress for sure … Write those things down, I felt like a switch was turned off and my stress levels started going down after s, slowly but surely.
Re visiting - I don’t know the rules, but I would double check with them, bc mental health is very important and it would be quite hard for someone to go through chemo and not have family visiting to encourage and support them. I think it depends on the hospital, facilities, risk of contamination, exposure to immuno compromised patients… UCLH have been very accomodating, I really hope you will be able to visit.
There is no shortage here, or at least we were not told about it. I really hope things will improve for your hospital 
but with Burkitt’s, I think he would be considered a priority… but you need to discuss with his team about his.
HUGS xx
Oh yes he is definitely priority, the delay for him was only 1 week. We can visit him in his room, his youngest sister and anyone under 12 are not allowed though.
Paying it forward is exactly what I keep telling myself, it helps me knowing that one day ill be able to help others through this, and just having more of an understanding of what other people are going through.
Hello,
Yes, it is sad the little ones cannot visit 
My little girl could not either, she was deemed “a bug vector” 
especially bc she is going to nursery. But the video chats help and maybe they can play a game online together.
I asked my husband what were the most useful things for him in hosp to keep him going and he said : his own pillow, netflix and his steam deck (games console).
It’s going to be an adjustment for sure, the days are long, but the months will fly.
When was your son diagnosed? And what were his symptoms?
My husband started with a tummy ache caused by a gastric ulcer that was actually lymphoma and diarrhoea. The Dr thought is was IBS to start with. His signs started 2months before he was diagnosed with Burkitt’s, and the night sweats started only 2 weeks before his diagnosis. He never had enlarged lymphnodes on the outside that could be palpated, only the abdominal ones were enlarged…
hugs xx
My son had some tummy cramps for about two weeks, followed by blood in his stool, which became quite severe.
The first time he went to hospital, they arranged for him to have a colonoscopy the following week. The second time he went in, he was told it was likely haemorrhoids, but to continue with the colonoscopy appointment that was already booked.
Things continued to worsen, and the third time I sent him back to hospital they finally sent him for a CT scan. Within about 20 minutes of that scan, he was taken in for emergency surgery.
The CT showed he had something called intussusception, which is where the bowel telescopes into itself. During surgery they were still unsure what had caused it, but they removed part of the bowel and sent the tissue away for testing. About a week later, we received the news that it had come back as Burkitt lymphoma.
Looking back, there were a few other things I noticed. He had a cough that had been hanging around for a while, he had lost some weight, and he was quite tired but we weren’t really sure why. At first I didn’t think too much of the weight loss because he trains MMA, so weight changes and cutting weight can be quite normal for him. But he hadn’t really been training at the time, so I did notice it was a little unusual.
Op was the 16th of June, diagnosis the 24th.
Thank goodness for facetime and gaming. I think i read that you are almost half way through now? I might not be the one with this but gosh this has changed the way i feel about life. Also I never knew about all the struggles fanilies face when receiving a diagnosis like this. I’ll never walk past a donation box again without stopping.
Oh Sam looks like it’s been a rollercoaster of emotions, no wonder your stress levels have been through the roof!
I know exactly what intussusception means, I’m a vet and I do this surgery… And I also know how worrying the post op days are, when you just pray the intestines will heal and there won’t be risks of wound breakdown and peritonitis… I lose sleep over cats and dogs, I cannot imagine a mum’s worry…
My story was quite short in the previous post, but we also went through him having tummy bug symptoms, he became pale/anemic, was booked for colonoscopy+endoscopy, got worse, went to Emergency and had a CT scan that showed enlarged abdominal lymphnodes and thickening of the stomach, then a few days later an endoscopy that showed a 6cm stomach ulcers and a few smaller ones. They assumed it was a very severe/incurable type of cancer, they said we might be looking at 7-12months, which completely broke us … that’s probably an understatement … And then the gastric biopsies came back which showed it was lymphoma and we actually celebrated/happy tears bc at least there is treatment and hope for cure… It took them another 10days to diagnose Burkitt’s bc they had to send the samples to a specialist in hematology to review them and this entire time there was a big worry about stomach/ulcer perforation… His first day of chemo was the 7th of May, his birthday was the following week and we spent it together, just the two of us, looking at birthday cards and opening some presents.
It was a real struggle diet wise, bc of the stomach ulcers he could not tolerate many foods… he had nothing except water, baked/mashed potato, chicken soup, bananas for 1 month and a half. He lost about 20kg since Feb…
He started being able to eat anything and everything about 3 -4 weeks ago, which made a huge difference to his mental health! But it also meant the chemo is working and he is getting better.
He finished his 3d cycle (3/4) on Wednesday and he is home with us for a few days, until he will be admitted again next Tuesday, for his 4th and final cycle
I know what you mean about seeing the world differently… in a weird and messed up way I am grateful we are going through this bc it made me realise what it’s important in life, and not to take things for granted and that I should stop worrying about certain things, and be more brave/try new things/travel more… And it does make you stop and listen when you hear other people going through this, instead of “not my pb, not my reality” approach.
Fingers crossed he will start chemo soon hang in there! xx
Oh Thank you for sharing that Lina. What a time! How absolutely terrifying. So glad he gets to come home, this gives me hope. They have told us 6 months straight with no home visits or even outside. This is the hardest part for us. I am really worried about his mental health. He leaves today.
Your husband and my son share birthday months. He has just celebrated his 19th when he began showing symptoms.
I used AI to put our story together on the previous post 
AI and I have become quite friendly.
I have heard it has been quite warm over there, hope you have some nice comfortable weather whilst he is home.
Hey,
That sounds incredibly tough, 6months straight in hosp and no going outside… they surely have a good reason for this. But at least you can visit him and as I said, there will be days where he will just wants to sleep and won’t be keen on visits.
Be there for him in any way you can. Try and get some get well soon cards, photos from his family and friends, make it funny as well. For my husband’s birthday I got him a photoblanket - nice cosy sherpa blanket with about 16photos of me and my little girl and he absolutely loved it, great discussion topic for all the dr and nurses. For him it was more like a comfort blanket and kept him motivated to get back to us. Another thing was a little bracelet with my little girl’s name on and a little cross, he was not much of a believer, but this disease and the chemo will make you question your faith/ spirituality. He has been wearing it every day and it gives him much comfort.
And tell him to embrace the chemo, it will make him feel rough, but it’s what will eventually make him better. And to be fair… there’s no other alternative.
Fingers crossed all goes well xx
Hello Sam,
I hope you are well. How are things with your son? Is he all settled into his new room? Were you able to stay a bit with him?Everything must seem quite surreal… but it will soon become the norm weirdly enough.
Hang in there xx
Thanks for checking in Lina 
He is going great, he is super positive, no side effects yet, vitals all good. Gets his third lot tonight.
We are very confused though, After telling us he won’t be going home/outside ect, the new dr has said that is ridiculous and he will get out at times.
His father is staying with him, my son didn’t want me there yet because I am too emotional.
The steroids gave him so much energy with some bursts of anger, he was funny about it though and had us all laughing on facetime.
How is your family time going? When does your husband head back in?
Hello,
Good to hear that he is feeling better and yes, the steroids are amazing! So happy to hear that he will be allowed home from time to time 
it will definitely make a huge difference to him.
It’s good that he feels positive, he needs that mindset.
What chemo protocol is he on? Wondering if it’s any different from what they do here in the UK.
I remember asking Rosevin if the chemo is actually working at day 10-12ish bc my husband was feeling great, no side effects but the cumulative effect of all the drugs he received up that point, and especially the Methotrexate, finally hit him at day 14 
My husband is going back today for his 4th cycle, it was really nice having him home for a bit and he really needed this break.
Fingers crossed for smooth sailing xx
It will make a huge difference, the 6 months lock down was the hardest news to swallow. I am not impressed that they told us that, they were very firm about it too. Strange.
This is the list I have for part A of his treatment
Rituximab (Rituxan)
Dexamethasone
Cyclophosphamide
Mesna
Doxorubicin (Adriamycin)
Vincristine
G-CSF (Granulocyte Colony Stimulating Factor)
All the best for round 4. So glad you all had some time together.
Hello Sam,
How are you and how are things going?
Funny how the protocols differ a bit and he is getting Mesna with the first cycle. My husband got Methotrexate.
Re Mesna - he always gets a sweet taste from it and he can barely tolerate food. Sour treats or drinks help him get through. He’s got 2 more days of iv chemo, then a spinal infusion on Monday, then the final bag of rituximab on Friday and he is done… and it seems surreal we got to this stage already. Now fingers crossed he won’t have any complications, infections during/after this cycle. At the moment he is completely wiped out and sleeping most of the day, and the sweet taste from Mesna . But the consultants are very happy with his response and progress, so we are also happy 
Sending good vibes your way! xx
Hi Lina, your husband is almost at the finish line? This is fantastic.
Day 6 for my boy today. I finally made it to see him. All he wants to eat is fruit and dry biscuits. He is very sensitive to smells, he said all he keeps smelling is mint.
We got some really good news about his plan. We are still unsure about why his dr said he couldn’t leave his ward for 6 months. The leukaemia foundation has organised his own 3 bedroom apartment where he may be able to receive his chemo at. This means we can come and stay with him, he will have a gym, sunlight all the good things. We are very confused though.
It was so good to seem him today, unfortunately I became his punching bag which was a little hard to handle. I know he doesn’t mean it though.
I will have your family in my thoughts.
Hey,
So happy you managed to see him and yeah, it’s a bit hard to cope with being the punching bag… but he really doesn’t mean it. Being given this diagnosis and going through chemo is not something anyone would be able to cope with very well, let alone a 19yo… He is probably going through so many emotions - stress, shock, rage, frustration, worry etc… this diagnosis hit him out of nowhere and all of a sudden affected his entire life and future… so hang in there.
And this brings me back to what I said before, not being able to visit every day is a positive thing for you/me … on one hand you want to be there to help and support, on the other hand it’s draining to see them this way and being the punching bag, so it’s good to have a break to recover for your own mental health. It is incredibly hard going through chemo, but it’s also very hard for your family going through this at the same time…
Our doctors were also talking about my husband doing some of the chemo in ambulatory care ( a type of hotel accomodation) where nurses would visit him and family would be able to stay and spend the night, but we never got around to it - he was either unwell and needed close monitoring or managed to come home for a few days.
I really hope he will be able to get out of hosp for a while, it will help break this cycle a bit…
You are doing great! Lots of hugs xx
Oh @Sam87 I really do feel for you, thank you so much for being so honest about you feeling that your son was treating you like a punching bag.
Yes, I have found a mum is the nearest and dearest and ends up as the punching bag, perhaps your son also has the effects of his treatment, his thoughts, fears, feelings and his own hormones entering adult hood in the mix.
That is exactly why we are here on our forum, you are now part of our forum family, plus the Blood Cancer UK nurses and support services, so you have a safe space to share and process your feelings.
Perhaps hospitals feel like really scary places for everyone, I know I feel very trapped as a patient and my thoughts and feelings have been on high alert. I am only thinking about Me.
We are here for you, as are the Blood Cancer Support Services on 0808 2080 888, please use us.
Look after and be ever so kind to yourself.