GRANDPARENTS OF KIDS WITH CANCER - WORLDWIDE
It's Our Journey Too
Life on the Frontline
These are real stories from real grandparents.
* Some names have been changed to respect their privacy.
Four years ago, Sam went for a regular hospital appointment thinking it was great to get out of school and everything, but unfortunately we got the worst news you could imagine . We were told that the MRI and CT scan had found a lump in Sam's liver . He had Stage 4 Liver cancer. The next morning he got rushed to Leeds not knowing what was going on or how serious it actually was . Now we realise how lucky he was. The tumour was life threatening, but Sam was very brave. He said 'You have to face your fears and act like everything is fine, when it really isn't'. The staff at the hospital were fantastic. Thank you to everyone who has helped us through the past year.
He now is doing well and into his 3rd year of recovery.
When Sophie* was first diagnosed at 6 months old, she was hospitalised from the Wednesday to the Saturday, where she received chemo and hydration fluid . I stayed with Sophie on the first night while her mum went home to be with the older 3 children, then she came back to the hospital on the Thursday, and I went home to look after them until Friday, when Mum came home, and dad stayed at the hospital from Friday to Saturday. This was the routine for the entire 14 months of treatment, plus extra days when Sophie got infections in her wigglies (central lines). When that happened she would be in hospital a further 6 days. When Sophie relapsed, she had chemo in the clinic one day a week. She then had to go to America to receive Proton Beam Therapy from July to September 2017. I stayed behind and looked after the older 3 children for 7 weeks.
My grandchild ‘Alex’* was unwell for months before . We took him lots of times to the hospital , doctors , “just constipation” they said. Then he kept falling over. They agreed to scan him. They sat us down and said he has a tumour in his tummy. It was neuroblastoma, Alex was 19 months . The world that we knew stopped at that moment .
This is our world now.
After a week of tests they informed us Alex also had a really rare neurological condition caused by the cancer as well. Opsoclonus myoclonus syndrome / dancing eye syndrome (OMS/DES)This would effect him for the rest of his life.
The treatment started , chemotherapy to shrink the tumour so it could be removed.
I was there for Alex and his mum , my older daughter.
My younger daughter, who was only 9 at the time, had her world changed also, as I spent more time with my older daughter and Alex while he had treatment as they needed me more. We became that family with the child who had cancer. It was a hard few months balancing work, family , just life , while Alex went through treatment. We learned about , ports , chemo, platelets , blood transfusions , sickness , mucositis the list goes on. We learned how to sit patiently , amuse a small child attached to pumps all day. We laughed we cried.
Then he had his massive surgery . He was so unwell after the surgery . They discovered he has an immunity to opiates. Basically after 11 hour surgery no pain relief worked, but as he was so young this was not recognised for a further 12 hours . I cannot imagine what pain he was in . We don’t talk about it, we can’t.
That was his 2nd birthday.
But that’s it 95% of the tumour removed . He was in remission. End of story ! Life back to normal! Alex’s hair came back. His portacath was removed from his chest. My daughter went back to work.
No chance of that 4 weeks later
Alex’s neurological condition (oms) returned , worse than before and he started receiving treatment for that. Every few weeks . If he doesn’t have it he becomes really unwell. It effects his mobility his behaviour his speech , in fact everything.
Recently because of the operation to remove the tumour Alex needed more major surgery. Because of his regular treatment it was decided to put his portacath back in. He has had the surgery. Needed further surgery because of infection. This is his 3rd birthday.
Today ,, the treatment he is receiving for his oms isn’t really working . He still has problems. So in the next few weeks he is having a more chemotherapy over four weeks that will destroy and hopefully reset his immune system. He will become so vulnerable to any infection and may not able to fight it away as he will not have immunity to fight it. This lasts for up to a year.
We have our Macmillan nurse back. We are back under oncology care.
People ask how he is. They say he looks really well, he has got loads of hair. I want to say “actually he is really not great “ I just say “ yes he is ok” they want me to say “yes he is really well he is cured”
Is he? I do not know, We don’t think of the future. We have learned to accept what’s going on that day. Cancer has changed everything.
I read other people stories on this group. I cry when a child dies. I have not met the child but I understand now. I feel the pain.
This is probably the only time I do cry now you sort of go numb. It’s a survival technique because if u cried for yourself or what your family is experiencing you would never stop.
I see my daughter being strong , angry, happy and sad because her baby had cancer. and I just want to protect her and make my grandchild well again.
I try to be there for all my family but see my young daughter miss her mummy as I have to decide who needs me most. Sometimes I get it wrong.
But cancer has also given us some positives. The whole extended family pulls together now . We care. We do not stress about the irrelevant things in life that we used to. We all love and appreciate each other more. We laugh more and appreciate what we have more.
We never thought cancer would happen to us.
My older grandson, Logan, developed a limp and right sided weakness around the time his little brother was born in October 2016. Their mum, my daughter, is a single parent. An MRI in late November showed that Logan had a brain tumour and a few weeks later this was confirmed to be DIPG (Diffuse Intrinsic Pontime Glioma) - a terminal brain cancer. The hospital could offer only 6 weeks of palliative radiotherapy which he completed in February 2017. He had no further treatment, although was cared for and his symptoms managed until he died in October 2017. On the day he was admitted for the MRI, I was handed his 7 week old brother and have cared for him since, while my daughter first cared for Logan and now struggles to decide whether she can carry on without him. We have stayed with my daughter and Logan in hospitals, hotels and make wonderful memories with him and his Mum on a Make-a-Wish trip to Croatia and for a weekend and later a week at Calum's Cabin on Rothesay. I saw Logan almost every day towards the end (he was smiling up until the day before he died), I stroked his hair and held his hand as he took his last breathes, I bathed him after he died and held him until he was placed in a cold bed before the funeral. I love both the boys and their mum and will always take care of them in any way I can.
One day I got a phone call from my daughter to say Christopher had managed to have an accident, he was wearing roller skates and trying to play football, which didn’t surprise me in the least.
He was 9 years old and a ball of energy, rugby, cycling, skating, Motorcross, you name it, sport wise, he did it!
He was supposed to be coming on holiday with us to France that summer, for the school break, it was only a few weeks away. My daughter said he’d been wearing all his protective gear but as he’d gone down pretty hard she’d taken him to get an x ray, just to be on the safe side. It showed nothing, so she had been told to give him normal childhood painkillers if he complained of hurting.All seemed fine apart from when he was lying down, he was complaining of pain then, she ran it by the doctors at A and E.She works in the pharmacy at the hospital, and they said if the x ray was clear he may have just pulled a muscle.So he came on holiday with us. We were not completely happy with him waking up crying in the night saying his neck was hurting, so I told my daughter. As it happened, the next day she was seeing her GP for herself, and she mentioned it to him, he said if you’re still uncomfortable with how he is, when he comes home we’ll send him for an MRI, it will rule out lots of not nice stuff and then we can narrow it down, he may need physio or something.
Great, that was done and in a few weeks he had his appointment through, off they went, both in uniform as my daughter was going to drop Chris at school and go on to work. He had the scan and my daughter said they seemed to be a long time, knowing how hospitals can be she wasn’t too perturbed.
Then she was called in to see the doctor and shown Chris’ MRI, it showed a tumour that was on the base of his brain, down past his brainstem and down 4 of his vertebrae. Angharad said she was moving through treacle with the shock, she was aware of what was being said but it was almost as if it was being said from a great distance.
She’s a strong woman, having had health issues of her own since the age of 3, so she took a deep breath and said OK what do we do about it? Chris’s Dad works all over the world, and he was in Tunisia working. For the first time in 15 years she rang him up and said get home now and told him why. His works were wonderful and he was off on the next flight almost.
Angharad rang her work ( NHS hospital ) and told them, they said oh ok, when can we expect you in then ! ( she was not impressed).
They were sent home in an ambulance and told to pack for going to Alder Hey Hospital ( they live in Staffordshire ) so she did, and off they went. A week later Chris had a 13 hour op, Angharad was warned he may not recover, he may recover but not be able to move, see or speak, depending on how the op goes.
Well it went very well, the team were wonderful and Chris woke up asking for food ( a good sign), however they had needed to remove four vertebrae and could only put 3 back, the one they left out was the one his head normally pivots on.
That meant he was in a dangerous situation, no school,no sudden moves, no sports, no trampolining, no cycling. He was singulary unimpressed. My daughters work even less impressed, she was given a hard time for needing to be off work.
The following months were difficult for him, he’d gone from a whirlwind to hardly moving, incase his head came off. After 3 months he had an MRI, that showed three tiny bits of re growth.
The surgeon Miss Pettorini arranged for them to go to Oklahoma for the new (as it was back then) Proton Beam Therapy, he was over there for 12 weeks and had to have half an hour treatment at a time daily. We are now 4 years on and Chris is a strapping lad, slightly weak in the left hand side of his body when he’s tired, but grown like a weed. He was very thin before his op. We were told the tumour was taking the nutrition,
When he returned home he still wasn’t allowed to go to school, and the school refused to send any work home for him to do despite my daughter asking on numerous occasions. In the end they got him a tutor, a lovely lady who was all business like and knew exactly how he should be handled. That cost an awful lot of money.
Its not only the physical side of things, they had to live in USA for three months and keep their home going too, luckily lots of people raised money for just such an eventuality and she was very grateful for the practical help too.
Its left him with PTSD, survivor guilt and a fear of needles, and a great dislike of hospitals to the point he didn’t want to go and meet his baby brother, because of having to go into hospital again. He’s seeing a psychologist and is working through these issues. His good friend died aged just 16 of Ewings sarcoma, and he asks why did Em die and I didn’t, what do you say to a child? Her doctor wasn’t as good as yours? She was told it was gowing pains.
Chris’Tumour was a Pilocytic Astrocytoma. My daughter went grey within a few weeks. We still worry that “the Alien” as Chris calls it will return, however he must live life to the full ( still no contact sports, but he does have his bike back.
My Grandson Khaleel was diagnosed with ALL in July 2014, a few days after my Daughter Kelly opened a nail and beauty boutique, we were away for our Son's wedding when we first saw Khaleel had little red spots around his ankles and neck, to me it looked alot like a meningococcal rash but he was very well in himself another thought was that as we were in caravans it may have been a reaction to the bedding so we continued to observe Khaleel for any deterioration, when we got home from our few days away Khaleel started to complain of lethargy, the spots were still there but hadn't increased in severity, his lymph nodes to his neck had become swollen and was taken to three doctors within the week who kept saying it was a virus, one if the doctors questioned the spots n did say if they remained he'd like Khaleel to be assessed at hospital by the paediatricians, as the week progressed Khaleels joints began aching and he was unable to walk up/ down stairs. My Daughter by this point was increasingly concerned and as Khaleel was under Birmingham Childrens Hospital as he had Hydrocephalus and a shunt in situ, Kelly explained her concerns and A&E agreed to see Khaleel. Once seen by several doctors and blood tests the doctors suspicions were confirmed that Khaleel had Acute Lymphoblastic Leukaemia (ALL) and he was admitted immediately and chemotherapy commenced. As Khaleel had three siblings all younger than him, me, grandad, great grandparents, Mum and Dad took it in turns looking after the other children which was the case throughout his treatment, Khaleel had illnesses, port infections, after effects of his treatment which meant he had several admissions into hospital ( Birmingham and Telford PRH) and we all took turns either looking after siblings, sitting with Khaleel or sleepovers so Mum n Dad had the chance to have some family times with the other children, throughout this my managers/ colleagues were extremely supportive (I'm a nurse working in A&E so as you can imagine comes with its own stresses), I'm also a carer for my Mum. Work/ life balance for all of us was a massive juggling act and needed to be altered according to Khaleels hospital admissions, we also took it in turns taking Khaleel to his appointments. It was very tough on Khaleel, siblings, us as a family cos everything was very unpredictable. We were told if a child was to have any cancer ALL was the best one to have, Khaleel was low risk and to be told this at first was very reassuring but when Khaleel relapsed in Nov 2017 whilst on maintenance and restarted treatment it was then it dawned on me that no cancer is a better one to have, cancer/ leukaemia destroys lives and when children come through the treatment and ring the bell ( which is lovely to see as not only are they doing it for themselves and their families but also for children that didn't make it) but these children are left with physical, emotional scars from the treatment, to me it's like post traumatic stress, the children and families are left with as families in their minds are living in fear of relapse and are anxious when it comes to clinic appointments, dreading the words that the cancer has returned. Khaleel needed a bone marrow transplant and as he was Pakistani / British his chance of getting a donor was very slim, luckily though January 2017 three potential donors were found and one from Germany became Khaleels donor, which we were grateful for, post transplant Khaleel ended up with fungal infection to his lungs and two- three other infections common post transplant which made him very unwell, we kept hoping and praying that his counts would rise but didn't, at this point neutrapenic 50+ days and Khaleel ended up with sepsis and transferred to intensive care, he started with severe pains to back and chest and was put into an induced coma, the best chance of survival now was a rescue transplant of bone marrow from his Dad which Khaleel received and started to work which we were all ecstatic about, unfortunately by this time Khaleels body was giving up, he ended up with multi organ failure and died in the arms of his parents, one of the worst things to happen to our family was for Khaleel to die as we all thought he'd amaze us and pull through. so yes cancer / leukaemia can destroy children and their families but there can also be brilliant outcomes, juggling was very difficult for all of us and trying to keep family together also, it was very physically, emotionally, financially challenging and still is as it's been five months now since Khaleel died. Khaleel was a true fighter, he amazed us by pulling through situations which doctors thought impossible, he was courageous and showed family and friends what a hero he was......another massive hole has been left in our family unit but Khaleel isn't suffering anymore, he is pain free and running around doing what a 12 year old should be doing and I'm reassured that he's with his Uncle Jamie who tragically died six years ago, causing mayhem in Heaven xxxxxll be more stories added from our amazing families very soon.
My grandson Dominick was diagnosed with High Risk Pre-B cell Acute Lymphoblastic Leukemia November 12, 2014. He was 2 1/2. Unfortunately, 8 months before his diagnosis my son in law passed away unexpectedly leaving my daughter with a 4 1/2 year old girl & a 2 year old boy. My daughter was only 33 years old. My husband & I are her main support system. We live 5 minutes away from each other & it's not unusual to get a phone call to hurry over, especially when Dominick was in the height of treatment. He has finished chemo but still goes for monthly blood work & quarterly bone marrow testing. We care for my granddaughter then he goes to the hospital. It's not how we planned to spend retirement but as they say "when you make plans God laughs". It hasn't been an easy road but we're in it for the long haul. Family First!
Benjamin was diagnosed with ALL in November 2013, he had no warning signs or symptoms. It was a check up that raised a “red flag” with his blood counts that had us go to the hospital for further tests which confirmed leukemia. Here we were shocked, scared and getting ready for Benjamin’s little brother who was due in the next couple of months. We found out this was going to be a long journey as the treatment plan for boys is over 3 1/2 years. Together is how we were able to get through it all. As a grandparent your worry is twofold, your grandchild is fighting the beast, and your child, your baby, is faced with taking care of their baby and balancing taking care of siblings (if any). For my daughter and son in law three older boys and a newborn who came earlier then expected and had to spend time in the NIC. The one constant in this journey was we all had each other’s back. Whatever was needed we were and will always be there for each other. I would be amiss if I did not mention the support I received, and continue to receive from other grandparents, who I can honestly say are now friends for life.
On 18th June 2014 I received a phone call from Sam ( who had been to see the doctor that morning). He had been suffering from back pain , he said could we come down as there was a doctor there & Mum was at work , I panicked a bit but we rushed down. Doctor said his platelets were low & he was to be at the hospital by 8.45 am the next day , I had to tell his Mum when she got home after finishing a long shift . Next day 19 th June by 9am our world shattered when we were told our kind gentle 19 year old Sam had ALL Acute Lymphoblastic Leukaemia & he needed to go to our major hospital to be treated ( luckily for us & him to a teenage Cancer unit). They were marvellous, so positive. He was asked if he knew what Leukaemia was he only knew it was to do with platelets so she told him very gently he had Cancer , he was so brave . He was an inpatient for 18 weeks before getting home after a stay in intensive care. Unfortunately he was so sensitive to chemo it was a struggle for his treatment but all seemed to be going ok & at Christmas 2014 he was in remission.With boys it is a 3 year treatment plan so more treatment. They tried reducing the strength of chemo but he spent week after week in hospital never getting out for more than a couple of weeks here & there but he got through always cheerful. My daughter stayed with him all the time.Stopped work when he was diagnosed, never left his side & I spent nearly everyday there as support for them. This is what Sam wanted too. Through that summer it was hard but he was managing but unfortunately on September 10th 2015 only 10 days before his 21st Birthday he relapsed and needed a bone marrow donor. This proved difficult so after pneumonia, sepsis , and many other awful things he survived & learned to walk again. Found a bone marrow donor, we thought he would now have a chance. I’m afraid this proved not to be. His amazing Dr managed to get a trial drug (not chemo) from America & in early April he was given this drug. By the end of April he got the news it had killed the Leukaemia. Oh the joy ,but he had trouble taking it in & just kept sleeping 7 th May they rushed him to intensive care & said it wasn’t good he had multiple organ failure. He rallied a little but lost the battle on the 12 th May 2016. This group helps a lot. I wish I had known about it when he was diagnosed. I didn’t know any other Grandparents who were feeling like I do. It’s an amazing group to be in.
Simon was born on 31 July 2009 – He was beginning to walk and chatter, at about 11 months old, his mammy and granny took him to a caravan, and we had great fun walking around the caravan, where he held his mammy and granny’s hand. In February 2011 he went on an aeroplane for the first time, he had lost the ability to walk at this point but was still crawling, but his head kept falling as it was very heavy, but soon after that everything stopped working and he could no longer, walk, crawl or sit without support and the family were very worried about him. but this took ages and ages, and he began to get really poorly. He was beginning to choke on his food. After a lot of badgering, he had an emergency MRI scan in May 2011. His Mammy and Daddy were told that he had hydrocephalus and a Low Grade Glioma on his brainstem. The doctors said he needed an operation to remove the fluid and take a biopsy of the tumour and because of where it is they said the tumour could never be removed. He had to have chemotherapy which started in June 2011, and it made him very poorly indeed. His red hair fell out and he lost a lot of weight because he felt very sick. He ended his treatment in January 2013 and doctors told his mammy and daddy that the tumour has almost gone!!
In the middle of this, his little sister was born in September 2011, she was meant to be born when he was between treatments, but he became extremely ill when mammy was booked into have his little sister, but they found it was nothing to do with the cancer. He was diagnosed with type 1 diabetes.
To follow on from that, he is unable to walk and talk, and currently has a walking frame (which is like a big baby walker) in the hope that he will walk.
He also has a physiotherapist at the moment, who is teaching him to walk independently. This is a very slow process
His parents and us grandparents went to signing classes, but he prefers to use his communication iPad.
Simon is a definite character, he loves his ipad and is quite a whizz on it and he loves to watch Mr Tumble and upsy daisy, but prefers it in Arabic, he laughs and laughs,
A normal day
Simon normally wakes around 5.30/6a.m. you can hear him making noises in his room, he is then carried into the living area, where he will play for a while, we then need to test his blood sugar levels, pricking his finger and testing it on his device (pod).
We then give him breakfast, after breakfast, we need to calculate how many carbohydrates he has eaten and input the information into his pod.
We watch Simon throughout the day to see if he begins to get sleepy or grumpy/crying as this means his blood sugar levels could be low/high – if he is high he would need insulin through his pod (if he is far too high as his pod has failed or been remove he may need an injection of insulin to get it into his blood stream quicker) if he is low then he needs sugar either sugary juice or glucogel sachets are the easiest for Simon to take. !!!!!!
Any snacks or food Simon has throughout the day must be entered into his pod.
Simon is sometimes a little naughty and removes his pod making his arm bleed, we then have to put another set into his arm, which normally lasts approximately 3 days
Simon can hand feed himself with things such as chips, chicken nuggets, cooked carrot sticks however if he decides that he does not want to eat that meal then the whole thing will be thrown on the floor – plate and all!!
As Simon cannot verbally communicate we rely on gestures and the communication iPad. Sometimes in the morning for example we can hold up 2 types of cereal for Simon to choose between given him more independence.
Simon has no danger awareness at all. He will often crawl into the kitchen – a sure sign that he is hungry - and try to touch the oven or grab for the grill as you cannot explain to Simon that they will hurt due to his limited understanding.
Simon was also diagnosed with epilepsy after having a number of seizures throughout his chemotherapy however as Simon has not had a seizure since October 2012 the doctors decided to reduce the epilepsy medication and although he does not take daily medication we do need to carry around his rescue medication in case Simon does have a seizure. He has rectal paraldehyde as he is unable to take the buccal midazolam as he had a severe reaction to this in October 2012 where he stopped breathing on his own. Thankfully we have never had to use the new medication.
Simon is still in nappies, which are rather large and cumbersome to carry around.
Wherever we go we need to carry a radar key, to be able to access disabled toilets, as his wheelchair does not fit into a normal toilet, but once we get in there, there is NO hoist, so we have to lift Simon and put on the floor, to change him. He is getting a little heavy to be lifted from his wheelchair and then to the floor, especially if there is only Mammy there to lift him, if there are 2 of us it is slightly easier as we can do a dual lift to get him onto the floor, but it takes experience and patience.