JOSEPH’S JOURNEY
A mother’s very honest and raw account of living
with infant cancer
Written and photographed by
Celine Bowen
Copyright © Celine Bowen 2013
All Rights Reserved
No part of this book may be reproduced in any form,
by photocopying or by any electronic or mechanical means,
Including information storage or retrieval systems,
without permission in writing from both the copyright
owner and the publisher of this book.
ISBN
First Published August 2013
Publishers Berforts Group Ltd
eBook conversion by M-Y Books
JOSEPH’S JOURNEY
A mother’s very honest and raw account of living with infant cancer
Dedicated to all the wonderful people who supported us throughout our journey and to the brave children and families we encountered along the way.
“Every day may not be good, but there’s something good in every day.”
– Author unknown
In April 2011 Joseph was diagnosed with Infant Acute Lymphoblastic Leukaemia. He was a few days short of six months old. Throughout his two year treatment, led by Consultant Haematologist Mary Morgan, Joseph was cared for by the incredible staff on Piam Brown paediatric oncology ward at Southampton general hospital, the paediatric oncology and medical teams at the Queen Alexandra hospital in Portsmouth and the children’s community nursing team, also based in Portsmouth. Their dedication, perseverance, compassion and professionalism can only be regarded as second to none. They saved our precious boy’s life, and for that we will be forever grateful.
Soon after Joseph was diagnosed, my Mother in New Zealand went in search of a book, written from the perspective of a parent, to help her (and us) gain an understanding of infant Leukaemia and what to expect during the course of Joseph’s treatment. A Google search proved fruitless and, on enquiry with The New Zealand Children’s Cancer Society, they indicated they were not aware that such a book existed. This somewhat surprising finding provided me with that extra incentive to continue documenting our journey, right to the end, no matter what the outcome in the hope that others living with childhood cancer would find my very honest and often explicit account a useful reference. Our experience has taught us, however, that no two journeys are the same – even for those enduring an identical treatment protocol for exactly the same disease.
Joseph’s journey, for us, reinforced the power of acceptance and positive thinking. It’s very easy to allow oneself to wallow in self-pity and question why such an awful hand had been dealt. Don’t get me wrong; there were times when Steven and I felt quite overwhelmed by the sheer enormity of what we were tackling. This was particularly so when Joseph was first admitted, the anaphylactic reaction he had to one of his chemotherapy drugs and the sepsis he suffered as a result of yet another central line infection. More times than we care to remember, Joseph’s life hung in the balance, but we soldiered on, with a smile. Even if it did have to be forced at times.
Joseph concluded his treatment on the 20th of April 2013. He has since continued to go from strength to strength, leaving us in no doubt that his incredibly tough roller coaster of a start to life is well and truly behind us. Joseph’s beautiful smile and endearing nature have won the hearts of thousands through social media and the work we have done with various children’s cancer charities, particularly CLIC Sargent. The knock on affect of this has been enormous; prompting many to take it upon themselves to increase awareness and, to date, raise almost £100,000 for CLIC Sargent. This has also led to some valuable work being done with Anthony Nolan to recruit bone marrow and stem cell donors.
Fifty pence from the sale of each book will go to CLIC Sargent, The Anthony Nolan Trust, Hannah’s Appeal, The Joe Glover Trust, Lucy’s Days Out and The Rainbow Trust. Had it not been for the kindness and support of these charities our journey would have been very different indeed.
Infant Acute Lymphoblastic Leukaemia (ALL) is a form of Leukaemia, or cancer of the white blood cells characterised by excess lymphoblasts. Malignant, immature white blood cells continuously multiply and are overproduced in the bone marrow. ALL causes damage and death by crowding out normal cells in the bone marrow, and by spreading (infiltrating) to other organs.
Acute refers to the relatively short time course of the disease (being fatal in as little as a few weeks if left untreated) to differentiate it from the very different disease of chronic which has a potential time course of many years. It is interchangeably referred to as Lymphocytic or Lymphoblastic. This refers to the cells that are involved, which if they were normal would be referred to as lymphocytes but are seen in this disease in a relatively immature (also termed ‘blast’) state.
Initial symptoms are not specific to ALL, but worsen to the point that medical help is sought. They result from the lack of normal and healthy blood cells because they are crowded out by malignant and immature leukocytes (white blood cells). Therefore, people with ALL experience symptoms from malfunctioning of their erythrocytes (red blood cells), leukocytes, and platelets.
The signs and symptoms of the disease are variable –
Generalised weakness and fatigue
Anaemia
Frequent or unexplained fever and infection
Weight loss and/or loss of appetite
Excessive and unexplained bruising
Bone pain, joint pain (caused by the spread of “blast” cells to the surface of the bone or into the joint from the marrow cavity)
Breathlessness
Enlarged lymph nodes, liver and/or spleen
Pitting edema (swelling) in the lower limbs and/or abdomen
Petechiae, which are tiny red spots or lines in the skin due to low platelet levels
On average, 25 infants (up to the age of 12 months old) are diagnosed with Infant ALL each year in the UK. Depending on the genetic make up of the Lymphoblast cells, infants with the disease fall into one of two categories – high risk or medium risk. High risk carries with it a 12-15% prognosis. Medium risk, the prognosis is 48%.
Joseph was diagnosed with Leukaemia at the beginning of this week (18th). It’s believed he has a combination of the disease called Biphenotypic Leukaemia. In a nutshell, this means he has infant Acute Lymphoblastic Leukaemic (ALL) cells and Acute Myeloid Leukaemic (AML) cells. Apparently this does not affect his treatment or prognosis however we have been advised such a disease is very rare in a child under a year old. He will be 6 months at the end of this month.
Joseph’s prognosis is, at best, 48%. We are still waiting for one more test result to come back (likely to be Tuesday) which will confirm exactly what type of disease he has. This will determine the genetic make up of the Leukaemic cells. Some cells are more easy to treat than others. If he possesses the more hard to treat cells, Joseph’s chances of survival will drop to a meagre 12-15%. I hope and pray we will not be faced with such a poor prognosis.
It all basically started with a chesty cough, which initially didn’t cause a great deal of concern. It was left for a few days in the hope it would clear up by itself. By Thursday last week Joseph hadn’t improved and we felt it was time for medical intervention. Our GP diagnosed a chest infection and prescribed antibiotics. We were confident this would do the trick. The four of us then went up to London to stay with family over the weekend, planned for some time. By Saturday Joseph was still not very well (we were told it would take 48 hours for the antibiotics to kick in) so, following a telephone consultation with NHS direct, he was conveyed to a walk-in centre in London where he saw another GP. I pointed out his laboured breathing, jaundiced skin and distended belly. Although I told her I was concerned there might be something more sinister causing his symptoms, she assured me it was a chest infection and to persevere with the antibiotics. She also prescribed a ventolin inhaler to help his breathing. I certainly got the impression she felt I was being a completely neurotic Mum. Had she taken the time to palpate his belly, she would have realised there was something seriously wrong as his liver and spleen were enormous.
That night Joseph vomited twice whilst taking his milk, showing no signs of improvement whatsoever. In fact, he was continuing to deteriorate.
We traveled home on Sunday and Joseph’s condition worsened. He vomited again overnight and appeared to be in a lot of discomfort (didn’t want to be held). By Monday morning I was becoming very concerned indeed as he lay on the sofa, unwilling to do anything but sleep. An attempt was made to see the GP again, however the earliest they could squeeze us in was 4.30pm. As the appointment was several hours away, Steven and I made the decision not to wait and took Joseph straight to A and E in Portsmouth. There we were seen almost immediately and, in the blink of an eye, Joseph was surrounded by several worried doctors who informed us our baby was very ill indeed. The fear we felt at that point was indescribable. “What’s wrong with him? Is he going to die?” Blood was taken and he was given an X-ray. Initially the Paediatrician believed he had a blocked bowel as he presented with all the symptoms. At the news, I fell to pieces, as this diagnosis would mean emergency surgery. However, when the blood results came back, we were promptly sat down and given the most horrendous news. It still hasn’t sunk in. I would trade Leukaemia for a blocked bowel any day.
Joseph spent the night in the hospital where he received a blood and platelet transfusion. A nurse remained with us constantly, even staying way beyond the end of her shift to help transfer us by blue light ambulance to Piam Brown in Southampton, our local Paediatric Oncology ward. We will remain here on the ward for a minimum of five weeks where Joseph will receive high dose steroids for one week to reduce his white blood cell count before chemotherapy begins. It will be intensive and we have been warned he will lose his hair (the little he has!), experience a great deal of nausea, lack of appetite and little energy. He will also have no immune system. His treatment will last for at least two years depending on how well he responds. A bone marrow transplant is the last resort.
A pretty horrible time but Steven and I know Joseph will pull through. He’s such a special boy. We waited a long time for him.
Joseph has been pretty stable throughout the day and his blood count remains at a level the doctors seem satisfied with. His platelet transfusion yesterday has brought his count right up to about 150... The normal range being between 200-400 (very good, considering he had a count of only 14 when first admitted to hospital). I don’t think he’ll need another transfusion for a good few of days.
Joseph continues to expel the excess white blood cells out through his urine. This is done by treating him with high dose oral steroids and then flushing his body through with an IV drip. The main side effect to this, I have noticed, is excess sweating. The hot weather we’re currently experiencing certainly isn’t helping his cause! His liver and spleen (where the excess white cells accumulated) have already begun to diminish in size so his belly is looking far less bloated.
Joseph remains comfortable considering the circumstances. Breathing is still an issue therefore oxygen remains on tap for the time being. Until the white blood cells (which also clustered) in his chest dissipate, he will continue to struggle. Codeine is providing excellent pain relief – however we have been warned it causes horrendous constipation.
Chemo starts this coming week. Joseph won’t experience any real evident side effects (hair loss etc) until about a fortnight into his treatment.
Alison, another Mum on the ward, asked if I’d take some pics of her newly diagnosed (tumour wrapped around her aorta) daughter, Megan, particularly before she loses her hair. I was happy to and they turned out beautifully. It’s a welcome distraction for me and it’s so nice to be in a position to do something for someone else. Photographs, particularly at a time like this, are priceless.
Joseph’s heart rate dropped a few times last night which caused concern. He was placed on an ECG machine for a short period and it was deemed, at that point, he was not in any kind of danger. He had the staff baffled though, even the Cardiologist. His heart rate began to drop again this afternoon. Ideally it should sit above 100 beats per minute (bpm) but it went down as low as 51 at one point. The Paediatric registrar felt it might be caused by the codeine. As it is opiate based, a side effect can be a drop in heart rate.
Joseph was again popped onto an ECG machine, which revealed a very irregular heartbeat. A cardiologist was then called to carry out an ultrasound of his heart and central line. A very small amount of fluid was found around his heart however this apparently is not the cause of the irregularity. Doctors appear confident the issue will resolve itself within the next few days. In the meantime Joseph will continue to be closely monitored.
Throughout today Joseph has appeared a little more comfortable. He was undoubtedly very pleased to have his catheter finally removed. It became blocked for the third time (due to the white cell sediment) so the decision was made that it was better out than in. They often tend to be the cause of infection and that’s the last thing the wee man needs at the moment – particularly as he’s also teething!
A number of people have asked how I find the strength to write about our situation. It’s funny, but I’m finding recording our experience is an effective way to get my head around what is going on. Although extremely painful and surreal, I don’t want to lose track of where we are and the progress we will soon be making. The days soon tend to merge into each other.
Joseph has had his best day yet since his admission. We have been treated to lots of smiles and even a couple of giggles. Music to our ears and a sound we thought we might never get the opportunity to hear again. He is evidently feeling much better. So much so, the nurses have disconnected him from his oxygen and IV saline, which means a few less tubes to contend with. It’s making it a little easier to give some much-needed cuddles, of which we are very thankful. It is likely he may still require some oxygen overnight but this is not unusual during a deep sleep.
There was a period today when Joseph was completely inconsolable. After much perseverance Sister Leigh suggested trying him with a dummy. I wasn’t holding up much hope, as Joseph had never taken to one....... until now! I’ve hardly been able to extract it from his mouth!
Until now, I’ve never really been in the position to fully comprehend the meaning of ‘one doesn’t appreciate life until something bad happens.’ The situation we have found ourselves in is bound to put everything firmly into perspective for us. The trivial things in life are just that.... trivial. I’m often guilty of allowing everyday life to stress me out beyond belief but now I ask why? We have so much to be thankful for. A home, good jobs, wonderful friends and family and two beautiful boys who mean the world to us. It’s so important you value every second as life can deal some pretty cruel hands. I never would’ve thought, in a million years, Steven and I would be faced with one of the worst predicaments imaginable for a parent. We couldn’t possibly be a healthier family. But then, there is nothing that can be done to prevent the onset of Leukaemia. Apparently it’s just a freak of nature. Our consultant, Haemotologist Mary Morgan, tells us Joseph could’ve had the disease whilst in the womb.
We have some amazing staff looking after us. Sabrina, a Sister assigned to Joseph last night, has a great deal of experience in Paediatric Oncology; working at Great Ormand Street Hospital for five years before coming to Southampton 10 years ago. I asked her how many babies she had been involved in treating with the type of Leukaemia Joseph has – a combination of Infant ALL (Acute Lymphoblastic Leukaemia) and Infant AML (Acute Myeloid Leukaemia). She has experienced only one other case. It then hit home how very rare his particular condition is. Sabrina spent much of her five years at Great Ormond Street hospital dealing with the bone marrow transplant side. She didn’t wish us to discuss that too much as it’s not even a consideration for at the moment. It may well be that we’ll never have to cross that bridge. If it does become an option, Isaac would be the first port of call as one in four siblings are a match.
Our wee man looks like he’s due another blood transfusion in the next couple of days. The fifth one since he was diagnosed. If you ever want to do something amazing, like saving a life, consider giving blood. After this nightmare is over, I will be a blood donor for as long as I’m allowed to. Without those five kind donors (three blood and two platelet), Joseph wouldn’t be here.
Before I go any further... We’ve been told the results are in but they haven’t been delivered to us. So, crunch time is tomorrow morning if all goes to plan.
The wee man woke up this morning completely RAVENOUS! His appetite has come back... and some! I’ve been told the high doses of steroids he has to take, in order to reduce his white blood cell count, tend to cause insatiable hunger and horrendous mood swings. Obviously, with this, there is the probability of becoming rather porky. As many of you know, the wee man doesn’t need a great deal of help in that department! He has been on top of the world today, smiling and giggling. Loves the game peek-a-boo. When he’s in such good spirits it’s hard to comprehend how very sick he is. We must savour this time as chemo is going to knock him sideways.
I haven’t left the hospital yet since Joseph was admitted a week ago. Only one of us is allowed to stay so Steven has been coming in every morning and going home every night. We start ‘tag teaming’ the hospital stays this coming weekend, as Isaac will be returning from Shropshire after having a few days with Nana and Grandad. Although it will be a wrench leaving the little man, I have to appreciate it’s not ideal remaining at the hospital constantly. There is the danger of becoming too institutionalised and I must continue being a good Mum to Isaac. He is at such an impressionable age and it won’t be long before the realisation will hit him just how serious this situation is. I don’t want him to feel for a second that he doesn’t have my full support. Although gobby (like his Mum), he is exceptionally sensitive.
We were visited by Naomi, the MacMillan outreach nurse this afternoon. She will be visiting us at home when we are finally allowed to escape and also liaising with Isaac’s school to coordinate a care plan for him on an emotional level.
We have finally received a definitive diagnosis (Infant ALL with some Infant AML traits) along with Joseph’s prognosis.
Mary delivered the best news we could’ve hoped for – a 50% chance of pulling through.
In the beginning we were warned that there was a very strong possibility he might only have a 12-15% chance so you can well imagine the urge we feel now to sing from the rooftops! We’re in a good position to beat this.... and we will. We learned that only 25 children in the UK every year are diagnosed with the specific Leukaemia Joseph has.
Joseph started his Chemotherapy today. He is being treated with four drugs on top of an oral steroid. These do have fairly harsh (possible) side effects – hair loss, nausea, grumpiness, low resistance to infection, tiredness, diarrhoea, constipation, anaemia, bruising and, very seldomly, a weakening of the heart muscles. We are savouring every moment, as it won’t be long before he seriously begins to feel sorry for himself.
This first stint of chemo is for five weeks and very intensive. When completed, he should be in remission. The abnormal cells will soon begin to multiply again therefore the idea is to keep blasting him with chemo every few weeks until his body expels all the abnormal cells and his bone marrow has been re-trained in how to produce normal blood cells.
Now that Joseph has been disconnected from all of his monitoring equipment during the day (following the heart scare), we have been given permission to take him off the ward to go for walks around the hospital and grounds. Not particularly picturesque, but it’s a start. The monotony of hospital stays can certainly take their toll. It seems to be more so for me than Joseph. It’s a blessing he is so young. Thankfully all the children have access to loads of toys, books and DVDs. Each bed has its own X box (Steve’s happy!), a TV and laptop. I get the impression Piam Brown ward is very well funded.
I mentioned to one of the nurses that it’s Isaac’s birthday coming up very soon and we hope to take him to Paultons theme park whilst one of our friends kindly sits with Joseph. Five minutes later she returned and handed us three tickets! Now, it’s not often I’m left speechless.
Joseph had his second lot of chemo today. We now have to wear gloves to change his nappies and clear up any bodily fluids due to the potency of the drugs. One of them is notorious for causing urine and tears to turn pink!
Today Joseph started to experience side effects of the Chemotherapy-a little bit of sickness and constipation. Every day for the next four weeks he’ll be given three different types of Chemo drugs. He’ll also have to take meds to combat sickness, thrush and another to protect his kidneys – as they’re having to work extra hard. Mary, our Consultant came and had a look at him this afternoon. She confirmed his liver and spleen have reduced in size substantially, which is very promising. The high dose steroids he’s been taking for the past week, plus the IV fluids have evidently done the trick in eradicating a majority of the white blood cells, which had bombarded Joseph’s body. One of the symptoms of his particular condition is the accumulation of white blood cells in the liver and spleen, which, in turn, causes a distended belly. The cells had also gathered in his chest area, which contributed, to his laboured breathing and nasty cough – initially mis-diagnosed as a chest infection. Joseph is booked in for a further lumbar puncture on Tuesday to confirm how he is responding to treatment.
Joseph had his first bath today since he was admitted. We had been wiping him down with wet wipes but they just don’t suffice after a while. We have to be so careful, however, not to moisten his central line and its dressing as this could lead to infection and complications. Not an easy feat, as it covers a large area of his chest and belly. Tonight he’s gone to bed with a bag attached to his penis in order to obtain a sterile sample of urine for testing.
Three more children (two tiny babies younger than Joseph) have been admitted onto the ward in the past 24 hours. I found one of the mums lingering in the corridor late last night and did my best to provide her with some comfort. She looked like a rabbit caught in headlights. That was Steven and I a mere ten days ago. It doesn’t take long before one begins to regard the hospital as a second home. It already feels like we’re part of the furniture.
The ward was really buzzing today due to the Royal wedding. We all woke up to find the main corridor within the ward lined with Union Jacks. The night nurses had been busy whilst we slept. And, to top it all off, a sole New Zealand flag hung just outside our room, thanks to nurse Anna. Very sweet touch. Most of the nurses donned tiaras throughout the day and many of the children ran around the ward all dressed up, waving flags. The ward was buzzing.
Joseph has been a bit grumpy today and slept a little more than usual. He also struggled to keep his food down towards the end of the day. He hasn’t had any movement in the number two department for the past 48 hours. A dose of Lactulose before he went to bed and a further one this afternoon has done nothing to help the situation.
We were warned Joseph would become increasingly hungry due to the steroids he’s required to take daily. It’s just incredible how much his appetite has increased in the short time we’ve been here. Before he fell ill, he had a little over 600 ml of milk a day, on top of the soft food at mealtimes. This has now increased to a litre. Our Consultant assures us this is normal. Good thing I stopped breast-feeding when I did. There’s no way I would have been able to keep up.
Yesterday afternoon I spent some time in the playroom with a few parents of children being treated on the ward. I got speaking to Jo, a lovely lady whose son was diagnosed back in January. She provided me with a frank and very honest insight into how our life is likely to be over the next two to three years, whilst Joseph endures his treatment. I sat and watched her son, smiling to myself. If he had hair, one wouldn’t have even known he had cancer at all. He was bouncing around the place, causing mischief.... winding his Mum up a treat! She then turned to me and said – “He’ll be completely different tomorrow. So sick and virtually bedridden. Usually happens on about day three of his treatment.” The ward was somewhat quieter today.
After almost a fortnight, the realisation has finally hit..... Our son is extremely ill, and we have virtually no control over the eventual outcome. We are two individuals who have control over almost every aspect of their lives, both personally and professionally so we’re in foreign territory. Not only has our current situation changed, but all our dreams and hopes for the future are now so very uncertain. All we can do is live for now and focus on the things that matter the most and directly affect us as a family unit.
As predicted, the Lactulose had the desired effect. Steven, who rather prefers to leave the number two nappies to yours truly, had three to contend with overnight. Good gag reflex practice.
Steven only managed three hours sleep so looked rather dark under the eyes when I arrived at the hospital. The regular visits by the nurses throughout the night to check Joseph’s temperature, blood pressure, saturation (oxygen) levels etc does cause a great deal of disruption.... as much as they try to go about their work quietly. The wee man is also waking at 2am for a feed due to his steroid induced insatiable appetite.
Due to another child requiring isolation, Joseph was moved out of his room and placed on the day ward this morning. Far more foot traffic and noise. To be honest, we were very spoilt to be in a room of our own for that long so we really can’t grumble. It’s also a clear indication that the Doctors are happy with Joseph’s progress and feel he can now mix with others (for the time being).
Joseph’s mood has changed somewhat. He was extremely grumpy today and very intolerant. So unlike him. We have been advised this is a classic side effect of the steroids. The fact he is teething like crazy adds to his frustration and discomfort.
Our coping mechanisms still require a little bit of fine-tuning. The whole situation is only just starting to take its toll – two weeks on. To be honest, up until today, I have been in a state of denial. It was only a matter of time before the enormity of this whole horrible situation hit us. And boy, has it ever. Like a goods train!
It’s Isaac’s birthday tomorrow. We are hoping to make it a celebration he will remember fondly.
It was ‘Daddy day care’ at the hospital whilst I spent most of the day at home helping to coordinate Isaac’s birthday. I arrived to relieve Steven just before 6pm, allowing him to go home and peel the wee man off the walls following a sweets overdose. All in all, it was a really superb day, made extra special by a number of very close friends and family. A massive thanks to Amanda and Tony for organising all the games, Grandad for doing all the shopping and making the food, Nana for making up all the party bags and helping with the decorations and George and Kate for providing more yummy food. Without this help, I honestly think the day would’ve been a disaster.
All the staff on the Piam Brown ward signed a card for Isaac and gave him a remote controlled car, which was incredibly sweet. I cannot fault the people here. Just amazing!
I have noticed that it is very rare for any of them to finish on time. I’m sitting here this evening watching a couple of the nurses, Chris and Claire, working their backsides off caring for a very sick teenager on the ward. They were meant to finish two hours ago! That’s dedication if ever I saw it!
On change over with Steven, he warned Joseph had been very grumpy throughout the day. As mentioned before, it’s likely to be the steroids. His mood isn’t helped by the fact we have been advised to water down his milk. According to the Consultant, apparently he is at risk of ‘exploding’! It’s really difficult to find the ‘happy medium’. I don’t want the child to be miserable through hunger, nor do I want to get to the point where it will require two of us to lift him. What to do.....
Steven has now advised me he is a pro at changing ‘number two’ nappies as Joseph has given him eight chances to practice since yesterday. That’s my boy! We’ve gone from one extreme to the other.
We had been considering allowing Isaac to go back up north for another week with Nana, Grandad and Aunty Sarah. But we decided it best to keep him at home to go back to school tomorrow. As easy as it would be to ship him off again, it’s only postponing what we NEED to do... and that’s face up to the fact that life must go on. Isaac, more than anybody else, needs normality. It would do more harm than good to keep him off school for any longer.
At the moment we’re stuck in the ‘day ward’ area due to a lack of space. Quite a bit noisier than the room we were in before so I don’t anticipate I’ll be getting much sleep tonight. Once Steve arrives tomorrow I might be able to squeeze in a nap.
Two visitors to look forward to tomorrow. Although Joseph gets lots of attention from all the staff here, it’s always nice for him (and us) to see a familiar friendly face.
Today was a tough one for us, particularly Joseph. He again, had a general anaesthetic for a lumbar puncture, a sample of bone marrow to be taken (to establish how well he is responding to treatment) and to receive a dose of Intrathecal Chemotherapy (injected into the spinal fluid to kill off any Leukaemic cells present and to prevent any from growing). Steven and I remained with him until just after he was anaesthetised. One second he was whining (no doubt about the fact we had had to starve him for 6 WHOLE HOURS before the op), the next he was limp and falling back into the arms of one of the nurses. Somewhat unsettling to watch but I was comforted to know we were the last faces he saw before going to sleep. Following the procedure he was required to lie flat on his back for an hour. Not an easy feat as he was absolutely ravenous! We had to give him his bottle whilst he was in this position and had no way of winding him. Let’s just say, I’ve seen him in better moods! He now has a whopping great bruise where they worked on the base of his back. Very sore indeed. As his platelets remain low due to the Leukaemia, it will take some time for the bruising to disappear. A blood count today also revealed his Haemoglobin is low therefore he is likely to require a transfusion in the next day or two. He’s looking a little on the pale side.
The four bed bay has its pros and cons. It’s a great way to get to know other parents and patients (some of them very well seasoned) however there is limited privacy and it can get pretty noisy. The only ‘me time’ I get is when I have a shower after Joseph goes to bed. There was a danger I was going to have to sleep in an armchair next to Joseph this evening. Fortunately the wee boy in the next door bed was transferred to another hospital so I have been allowed to take his bed. As you can imagine, I wasn’t relishing the thought of a night in a recliner. Some parents choose to cuddle up to their children. All well and good but I don’t somehow think Joseph would appreciate his Mother squishing herself into his cot. I’ve been told it has been done though!
The more time I spend on this ward, the more humbled I become. Before Joseph fell ill I had never really been exposed to anyone (particularly children) with cancer. It’s so extraordinary to witness the courage and positivity of the youngsters. Although very fragile and often in severe pain, they appear so much more resilient than the average adult. There’s very rarely any complaint. They just seem to accept the hand they have been dealt. I would never, in a million years, wish this journey upon anybody. However, God forbid, if any one of you have the misfortune to find yourself in this position, I can assure you your life will be enriched a million times over.
Let’s just say I knew the wee man was a little constipated but I never thought I would wake up to be greeted by something resembling a..... pine cone! The poor lad must’ve worked on pushing it out for half the night! Sorry to those who feel this is too much information... but I was astounded! Upon sharing the news this morning with nurse Carol (one of Joseph’s favourites), she assured me ‘poo’ is a ‘normal’ topic of conversation amongst parents throughout their child’s treatment.... along with HB, white blood cell and platelet counts and neutrophil levels. Believe me, the world we live in now couldn’t be more different!
I’ve heard that the nurses tend to fight amongst themselves at the beginning of every shift regarding who is going to be responsible for Joseph’s care. Of course that doesn’t surprise me really... Not only is he gorgeous (very biased Mummy!) and in good spirits (most of the time), but he is one of only a handful of children who takes his oral meds whilst asleep! I have no doubt some of them must taste foul, but he just laps them up without complaint. Probably thinks they’re food! He’s turning out to be quite a low maintenance patient... so far.
I completely forgot to mention in last night’s entry that I was due back to work yesterday. Now (for those who know me pretty well), for me to not be thinking about work, is somewhat unusual. Quite frankly, I’ve hardly given it a second thought following Joseph’s diagnosis. Although I wasn’t relishing the idea of returning to work (as I have enjoyed becoming a Mum again so much), I would go back in a heartbeat if it meant all this would go away.
Joseph’s red blood count has fallen quite substantially since yesterday (from 80 to 67). As a result, he’s in need of a blood transfusion. It was meant to be this afternoon however it has been postponed until 6am. From about tea time he was extremely pale, listless and disinterested in everything going on around him. He also refused to smile. For Joseph to lose his smile there MUST be something wrong! By brekkie tomorrow, he’ll be back on track.
Joseph now has no immunity whatsoever which leaves him wide open to infection. We were allowed off the ward very briefly this afternoon to go and sit in a small courtyard garden, away from the general public. It was so nice to get some sunshine and fresh air.
We have had a steady flow of visitors today which has really lifted my spirits. Thank you to those who take the time to come and see us. It means so much. I do understand some of you worry about what to say to us. I must insist that you don’t. We are doing our very utmost to take all this in our stride. Of course, don’t get me wrong, there have been occasions when I’ve despaired and questioned why we are in this awful position. This only takes up a great deal of negative energy however. What good is that to anyone?
Joseph had another blood transfusion first thing this morning which has boosted his energy levels no end. The procedure is so amazing to watch. Within minutes of it starting, you can literally see the colour beginning to return to his cheeks.
We received very promising news from our Consultant Haematologist Mary Morgan today. The bone marrow sample taken from Joseph has revealed there’s been a reduction in his Leukaemic cells, which indicates he is responding very well to Chemotherapy. Another sample will be taken on day 28. This will be ‘crunch time’ really and will prove whether the treatment Joseph is receiving is appropriate for his illness. If not, it will be intensified accordingly.
We had some lovely visitors today. I think our fridge is stocked for the next week at least! Thank you to the wonderful ladies who are ensuring we’re remaining well fed. To be honest, I haven’t really been favouring, amongst other things, the ‘melt in the mouth’ hospital vegetables. It was only a matter of time before my gut decided to go on strike!
Steven and I now have a ‘strength’ angel each which we keep in our pockets and Joseph has one dangling from his cot. A lovely thought Aunty Sylvia. We shall treasure them.
Steven and I would also like to acknowledge Andy Houghton, who we’ve known for the majority of our careers. He’s providing a tremendous amount of support both personally and professionally. We can’t thank you enough.
It’s Daddy’s turn to stay with the wee man for the next three nights. I do hope Joseph behaves himself as last night was a bit of a trial! The steroids are playing havoc with his poor wee body. I think if he had his way, he’d be attached to a bottle of milk permanently! We have been referred to a dietician, purely to discuss how best to deal with Joseph’s increasing appetite without placing him in danger of exploding.
As I sit here catching up with the blog, I can’t help but be deeply touched by all of your kind words, prayers and support.
Whether you choose to share your thoughts with us or quietly follow the journey, I want you to know that you are bringing a wonderfully kind, healing and loving energy to us all. Joseph, who is sleeping soundly by my side, sends his love to all xxx
Steve x
After school Isaac asked if he could see Joseph so we made the trip to the hospital and stayed for about three hours. Isaac still isn’t fully aware of how poorly Joseph is and doesn’t seem to really want to know at the moment. The hospital provided us with a couple of picture books to read to him – ‘Joe has Leukaemia’ (aptly named) and ‘My brother has cancer’. As yet, he has not asked to read them. We’re not going to push the issue though. He’ll indicate when the time is right for him. He seems to be adapting to the new world he lives in extremely well which, as you can imagine, has alleviated a lot of worry and stress for us.
Only yesterday I was watching Isaac play with two very sick little girls on the ward. Both are in the latter stages of their Chemotherapy therefore have no hair, fed through a naso-gastric tube and hooked up to a drip. Isaac didn’t stare nor did he ask questions. He’s such an accepting little boy. He also seems to appreciate Mummy and Daddy are not in a position to devote as much time to him, and he seems to be ok with this. It’s our trip to Paultons Park tomorrow (he has been advising us how many sleeps to go for about a month now!). It will be an extra special day... Just the three of us. My very good friend, Amanda, has offered to sit with Joseph in our absence.
Joseph didn’t have the most restful night last night, only allowing Daddy about three hours sleep. His hunger continues to be a bit of a problem so he finds it increasingly difficult to settle. The dietician visited today. She’ll draw up a feeding plan to ensure Joseph is getting the right calories in the most effective way.
Joseph is now showing signs of feeling unwell. He was very grizzly today and became quite upset when put down for any length of time. I arrived at the hospital to find him curled up on Steven’s lap looking a little sorry for himself. He had a longer stint of chemo today (two drugs which took just over an hour in total to infuse). One of drugs caused a very slight rash which was counteracted by giving him antihistamine. We have been told this is quite normal. He is also, once again, suffering from constipation. Another dose of Lactulose is on the cards I think, so a few more messy nappies for Daddy to contend with!
We almost had to postpone our trip to Paultons due to the wonderful English weather, however it managed to resolve itself by late morning. The three of us had a wonderful time and, thanks to the lovely nurse on site, it wasn’t necessary for us to queue for some rides.
Amanda did a fine job of looking after the wee man whilst we were away, keeping us informed of his progress via text. I joked with her on the way home that maybe she should be writing the blog tonight as she had spent more time with Joseph than us today. I got the impression she would rather leave it to me!
Steven had to sleep in another part of the ward last night due to a shortage of beds. I bet he was chuffed to bits upon getting a gentle nudge from one of the nurses at 2.45am telling him Joseph was awake and ready for yet another feed! The broken sleep does eventually start to take its toll. My lovely husband is no doubt going to savour our pocket sprung, memory foam mattress tomorrow night! Oh how we appreciate the comforts of home that much more now.
Although Joseph is lapping up his milk, he is now struggling to eat solids. He managed a small yoghurt Amanda offered him for lunch (probably because it was nice and cold) however completely rejected his veg puree. We were warned this might happen as the drugs he is required to take cause the mouth to become very sore and, eventually, ulcerated. I’m assuming the naso-gastric tubes some children are required to have are as a result of this. He is also now susceptible to thrush so he takes medication to counteract this.
We enquired today re the earliest possible date we could take Joseph home. We were advised this first course of Chemo will finish on May 20. He will then have to remain in the hospital for at least another week after that. A bone marrow test will reveal if he has gone into remission (body free of all Leukaemic cells) and whether new ‘healthy’ blood cells have started developing. If both of these results have occurred and Joseph isn’t running a temperature, a trip home for a short time may well be on the cards. That will be a very happy day.
The Chemo is starting to take hold and cause Joseph some real discomfort. When I arrived this morning to take over from Steven, Joseph was irritable and very unhappy about being placed in the sitting position, preferring to remain up straight. His tummy is very bloated which may explain the unwillingness to sit. The Registrar thoroughly examined him and advised she wasn’t too concerned, however she made the decision to pop him back on codeine to help with the pain. If this proves inadequate, Morphine is the alternative. His faeces are also looking a little abnormal so a sample has been sent off to ensure he is not harbouring any bugs.
Joseph’s appetite has picked up a little. He ate pretty much everything offered to him today. As I mentioned yesterday, there was a concern his mouth might be starting to get a little sore. One of the Chemo drugs, Cytarabine, is responsible for this. It also often causes gut irritation which leads to bouts of diarrhoea. I don’t think he is in for an easy ride but the nurses are monitoring him very closely and ensuring he is as comfortable as he can be. It’s difficult when he can’t say where it hurts.
As Joseph’s platelet count is very low, little patches of red dots have started appearing across his skin, similar to that of a rash caused by Meningitis. These crop up when his blood pressure is slightly raised and eventually disappear after a time.
It took quite sometime to settle Joseph tonight which is highly unusual. It’s now very apparent he is suffering intense pain (nurses believe in his tummy due to the Cytarabine). As he is only allowed Codeine every six hours, by the time he is due his next dose, he is beginning to get pretty distressed. We’re finding it very upsetting as there’s nothing we can do but offer him a cuddle. The nurse looking after him throughout the night has suggested Morphine, but this will be a last resort. At the moment, the Codeine is still having the desired effect – usually kicking in about 20 minutes to half an hour after being administered. As Joseph is so good at taking oral meds in his sleep, we will try to time it right and slip it in before he wakes and causes mass hysteria on the ward.
Joseph continues to wake at least twice during the night for a feed. The nurses are very sympathetic and, if they’re not too busy, change his nappy and give him a bottle. They can probably see the sleep deprivation starting to take its toll. We can’t fault the team of people looking after us. Not only do they do their utmost to ensure the journey for all children is as bearable as possible, they offer just as much support for the parents.
Throughout much of today, Joseph was experiencing constipation again. Two doses of Lactulose did the trick leaving me with a couple of explosions to contend with. To be honest, I’m rather pleased he finally went as I wasn’t too crash hot on the idea of the suppository they were suggesting.
‘Roid rage’ (so the nurses call it), amongst other side effects (the list is extensive), is indicative of prolonged steroid use. Joseph tends to get very angry and frustrated, particularly when he is hungry. I’m guessing the steroid (Dexamethasone) is responsible. Fortunately these ‘moods’ pass as quickly as they flare up. As we spend more time on the ward, it is very evident this behaviour is normal amongst Oncology patients. The tantrums Joseph has are not easy to contend with, particularly as he has always been a very angelic child.
Joseph’s blood pressure has been a little on the high side since yesterday afternoon so they’ve been monitoring this closely. His platelet count is also beginning to fall, currently standing at 34. Once it reaches ten, he will receive another platelet transfusion. The average count for a healthy person lies between 150 and 400. Other than those two little blips, Joseph is remaining stable and the Doctors are satisfied with how his body is coping with the treatment at this stage.
Joseph was in brighter spirits this morning following the harrowing task of trying to settle him last night. He still woke up three times for milk, altogether consuming a total of 1600ml (that’s 8 7oz bottles)! He’s not looking like he’s putting on a huge amount of weight yet but he’s certainly doing his bit to keep Pampers in business! He has acquired his first mouth ulcer and his bottom is beginning to get a little red. We have been warned that it will start to ‘break down’ (that’s the term they used)... thanks again to the Cytarabine. Nasty stuff but necessary. As a preventative measure we’re making sure we smother him in loads of barrier cream.