The Blood Cancer Journey of Rob Allen and his family.


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Email: roballenamljourney@gmail.com

This is Rob’s story:

(If you have the time, and the inclination please read it.)

Rob is a terminally ill cancer patient with a pregnant wife who is due to give birth to their baby boy in July, doctors don’t know how long Rob has to live. It could only be months, we don’t know. Rob is continuing with his treatment (even during lockdown) and we hope that with this treatment he could have a couple of years left, but the doctors really don’t know…we do know that the treatment is slowing his deterioration, but cannot stop it. We do know that the cancer will become resistant to treatment.

Early 2013, Rob appeared to be a healthy young man, but went to his GP to request a health check. They found that his neutrophils (a type of immune system cell) were low and the GP sent Rob to a Haematologist at James Cook Hospital. The haematologist was dubious and wasn’t sure that it was a problem that needed to be addressed, however he continued to monitor for the best part of a year. Every test Rob had indicated that his neutrophils were dropping, so they decided to do a bone marrow biopsy to take a sample of bone marrow and investigate why this was happening.

The results came back and Rob was called in to discuss with the Haematologist. He was told that he had a cancer called Myelodysplastic Syndrome (MDS). This is a blood cancer that usually only older people, over 60, get and is normally managed, but with him being only 33 at the time, they decided it would be best to try and find a bone marrow donor. A successful bone marrow transplant could cure Rob’s cancer, but it was also very dangerous.

Eventually, still in 2013, a suitable German donor was found. Rob had to go through intensive chemotherapy as an in-patient at James Cook Hospital for over a month. This was just conditioning chemotherapy to get the cancerous cells down before the actual chemotherapy and radiotherapy for the transplant. The chemotherapy was very heavy and almost completely wiped out his immune system, as intended, but there are dangers of infection when this happens and most patients are likely to get some kind of infection during their hospital stay. Rob was no different. He developed an infection in his leg, which worsened, and they were unable to operate immediately due to the treatment and his lack of platelets and immune system. He was given antibiotics. He came close to death during that stay. Eventually he was in a position to have an operation to remove the infected area. The operation was successful, but left him in a lot of pain.

In December of 2013, Rob was called back in to begin chemotherapy and radiotherapy to prepare him for transplant, this was also another inpatient stay for over a month, in which Rob had to be isolated from visitors and all doctors and nurses would have to wear masks and gowns to minimise infection. It was a very lonely fight.

The idea was to completely wipe out his immune system and bone marrow until he had none left, then replace the bone marrow with the donor stem cells (essentially a seed to grow new bone marrow) which will then go on to produce all the new and hopefully healthy cells he needs. This was also a very difficult stay. Every inpatient stay Rob had would cause him to feel nauseous and sick and he would lose a lot of weight, which was also another worry for doctors and his chances of survival.

The hope was that the new immune system initially would recognise Rob and his body as the enemy and it would attack him to begin with (which is actually a good thing as the chemotherapy and radiotherapy would never have wiped out 100% of his old marrow, blood and possibly the cancer) and the aggressiveness of the new immune system would help to attack and wipe out the remaining cancer. Rob had to be given immunosuppressants, to suppress the new immune system enough so that he didn’t have heavy Graft vs Host Disease (GVHD), which can attack organs, tissues and bone. It is a fine balance to ensure that the immune system could wipe out his cancer, without killing him.

To cut a long story short, the transplant seemed to be a success. It was a long road to recovery as the new stem cells had to create bone marrow which would bed into the bones and in turn that bone marrow produces all of the cells that Rob needs to live, such as immune cells, platelets for clotting and red cells for carrying oxygen to the brain and muscles. The platelets and red cells are obviously very important at all times otherwise we would die without them, so these were also given as transfusions on a regular basis until Rob could make his own with his new donor bone marrow.

Rob was very eager to get back to work and a normal life and, as soon as he had the fitness for this, he went straight back to work.

3 years had passed of a healthy lifestyle, Rob looked healthy and felt healthy. Rob’s life by his own words had changed drastically, he had a fantastic new career which he had started before his initial diagnosis, he met his soul mate Kimberley, he had managed to buy the car that he always wanted and things were looking fantastic for his future.

Devastating News

Shortly after the 3 years had passed, the hospital that dealt with his cancer had asked for a blood sample to keep an eye on things. This was just a routine test.

The blood sample showed that his neutrophils were not quite at a healthy level so they asked for further tests. The additional tests showed that Rob’s Cancer had returned. This was obviously devastating to everyone. It was very scary for Kimberley who had never seen what Rob had to deal with the first time round and although she hoped for the best, she was afraid to lose him after only having been together a few months and being very much in love.

The doctors decided that the best course of action was for Rob to have some more heavy chemotherapy as an in-patient to try and bring down the cancerous cells and then give Rob a stem cell top up from his previous donor. The intention was that the fresh new immune cells would attack any remaining cancer cells. Unfortunately, it turned out that the cancerous cells had become immune to the chemotherapy and the stem cell top up and it had multiplied so rapidly that it was worse than the initial prognosis. Once the cancerous cells increased to a certain percentage in his bloodstream it had become Acute Myeloid Leukemia (AML). AML is much more difficult to treat than MDS, so things were not looking good for Rob.

Love

After hearing the devastating news that the treatment hadn’t worked, Rob and Kimberley decided to get married, and did so approximately 6 weeks later in July 2017. Rob wasn’t sure if it was a good idea because he didn’t want to leave Kimberley to be a widow and he wanted what would be best for her when he was gone. But marriage to Rob was what Kimberley really wanted and, fear aside, so did Rob. They went ahead and had a lovely wedding, it was a perfect and emotional day.

Following the wedding Kimberley left her home and job in Yorkshire to be with Rob in the North East where he could be closer to the Freeman Hospital to access his treatment. She started a new job in Newcastle and she and Rob found a temporary new home. This was all within weeks of finding out his new diagnosis and getting married and was a very difficult and stressful time for them both, with Kimberley also now being away from her support network of family and friends.

The last chance that Rob was given for a possible cure was a drug called Azacytidine, it was a simple injection in the belly. The objective was to bring down the level of the cancer cells to try to get his body ready for a second bone marrow transplant. Unfortunately, the chances of this working was only 10%. That's a 90% chance that he would die. In the meantime the doctors searched for a different donor as they said the immune system of the first donor would be unlikely to get rid of any remaining cells.

During this time Rob made a good friend in the hospital from another patient, their circumstances were very similar with relapse at similar times and the same treatment.

Rob spent the best part of a year on this treatment - as did his friend. His friend died later that year. He was within that 90% of patients that wouldn’t survive.

Whilst on the Azacytidine treatment, although he would need transfusions to replace platelets and red blood cells, Rob felt relatively fit and healthy and managed to make lots of lovely memories with his wife Kimberley, including their first holiday together to a caravan in the Lake District and a night away as a belated honeymoon. Rob continued treatment and became very lucky as the treatment took his cancerous cells down to a level that he could be considered for a second transplant. A donor was found in Germany (again) and Rob underwent his second transplant in May 2018. Bone marrow transplants and the treatment given to prepare for a transplant are all very dangerous, so this was yet another difficult and scary time for Rob and his family.

The second transplant seemed to also be successful, but the donor's immune system turned out to be very unforgiving to Rob's body. He had both Acute and Chronic GVHD. He was prescribed high doses of steroids as well as immunosuppression to try and push back the effects of GVHD. This was fine to begin with (but the impact later has been significant). At this stage Rob was recovering. Eventually with steroids, the side effects begin to appear; heavy water retention, extreme lethargy and fatigue, to the point that he couldn’t lift himself out of a chair. Rob did not look like himself, he had what they call moon face, camel humps on his shoulders, a swollen abdomen and water collecting on his legs. He looked a shadow of his former self and the little trips and get-togethers that they had planned with family were often cut short or cancelled due to his health.

Between then and now Rob has been given a special treatment called Extracorporeal Photopheresis (ECP) that would ease the aggressiveness of his new immune system and allow him to be weaned off the steroids that were treating various side effects of the transplant, including painful and debilitating arthritis-like symptoms in his joints.

It took over a year, alongside prescribed medication, but eventually the ECP treatment worked and only just within recent months, Rob was taken off the steroids.

During Rob's recent recovery, with everything seeming to be going to plan and no traces of the cancer in his blood or marrow, Rob and Kimberley decided it would be a good idea to start a family and build a future. Rob had decided with help from his wife to start a new career and enrolled in University to study 3D Computer Art at degree level. Something that he had always dreamed of, but an opportunity that had not been available to him without Kimberley’s support and encouragement.

They also decided to explore IVF and started this process in September 2019. Unfortunately, Rob became ill with pneumonia at the end of September and spent 2 months in Freeman Hospital, meaning that he missed out on a lot of the IVF appointments with Kimberley. At this time Kimberley was still going to work and was spending every night at the hospital with Rob, sleeping on a fold out bed. Eventually Rob recovered and returned home where he needed to learn to walk again and required a lot of care. In what felt like a miracle, shortly after Rob’s return home, he and Kimberley found out that their first round of IVF had been successful and they were expecting their first child together. What very deserving parents they have already proved themselves to be.

At the beginning of 2020, they both felt that this was going to be their perfect year; they were having a baby together, they were looking for their first family home together to include space for their baby and Rob seemed to finally be making a recovery.

Terminal

It was only weeks later at the beginning of 2020, when Rob started to feel a slight tingling and uncomfortable numbness in the bottom of his left foot, that things took a turn for the worse. Rob had regular visits to Freeman Hospital, he advised his Doctors of the numbness and they asked him to monitor it to begin with to see if it would go away: it did not. The Doctors arranged an MRI scan of his spine.

The results returned showing swelling on the protective barrier around his lower spine, which showed to be crushing his spinal cord. More devastating news for Rob and Kimberley as he was told that it appeared that the cancerous cells had made their way into his spinal fluid. They would need to take a sample of his spinal fluid via a lumbar puncture to be certain.

The lumbar puncture was carried out on the same day and the results showed that there were cells there that shouldn’t be and the doctors, although they couldn’t identify the cells, said that since they shouldn’t be there they were 99.9% sure it was the cancer. Every lumbar puncture they would do to take a sample, they would also inject 2 chemotherapies and a steroid to try to reduce swelling.

Rob was told that this cancer was no longer curable as heavy chemotherapy cannot be injected into the spinal fluid as it would damage the spinal cord, so only lighter chemotherapy can be used. This is not for the long term as eventually it would damage the spinal cord and brain. This meant that Rob's cancer had now become terminal. The doctors did not know how Rob would respond to chemotherapy and if the cancer had perhaps spread too far into his nerves. Kimberley was only 14 weeks pregnant at this point and they had just announced their good news.

Because the cancer is so rare and so aggressive, the doctors have been unable to say how long Rob has left to live. However, it is clear that whatever time is left will not be long enough and Doctors were unable to confirm that Rob would still be alive to meet his baby boy.

A family home

Still he battles on. In early in 2020, Rob and Kimberley decided to continue their search for their family home, knowing that Rob needed somewhere more appropriate as his condition deteriorated and that Kimberley needed stability for their future. Rob confided in me and told me that it was a horrible experience to go visit potential homes and look around, knowing that this would be the place he would die. He felt like it wasn’t his home they were looking for, but his wife and child’s home. He desperately wanted the best for his wife and child, but it was just a very difficult thing for him to have to think about on a regular basis as they made appointments to visit lots of properties. They had to find a home suitable for Rob’s deteriorating condition, where Rob could sleep downstairs when the time came and have access to a suitable bathroom, but also somewhere which would be nice for them all to live in the long run, somewhere where Kimberley could continue to have a nice life with their child. Eventually, they found their perfect home, with a spare bedroom downstairs with an en-suite bathroom. A lot of what Rob would need would be down stairs.

They moved the day of lockdown, it was very tough, Rob could not stand up easily and his wife Kimberley at this point was pregnant and struggling, so they were in a house surrounded by unpacked boxes, with nobody to help them unpack, they couldn’t do anything but live with the basics.

As time has gone by Rob’s legs became weaker and he lost sensation in them. Eventually, over the course of a 4 month period, even though receiving regular chemotherapy in his spine, he also began to lose control of his bowels, his bladder and everything below his waist. Rob managed to walk on crutches, but could foresee that soon enough he would need a wheelchair.

Rob is not someone who enjoys sitting around and doing nothing. When he was able to he would like to work on his and his wife's cars if they needed any repairs, he would do DIY around the house and in the garden, he would do lots of housework, he was always one to keep himself busy but as he deteriorated, even the smallest of jobs, he just couldn’t do anymore. Emotionally this physical deterioration is crushing Rob’s spirit.

Rob is beginning to see all of the things that he will struggle with when he has lost feeling in his legs. He is a problem solver, and a worrier….

How will he use the tiny en-suite shower?

How will he lift himself on and off the toilet?

How, when he is in a wheelchair, will he get over the lip of the door and down the step?

How will he get into the family car with his wheelchair?

How will his wife and young child cope when Rob will need so much care and assistance?

How will they manage when he is gone?

There are many more things that Rob knows will become a struggle, or an impossibility. This affected him as much on a mental level as it has on a physical level.

Current health situation

Rob's weight and water retention carried on increasing, which has baffled the doctors.

After the 4 month of treatment, Doctors became curious as to why the treatment didn’t seem to be restoring any strength or feeling in his legs, so they decided to carry out another MRI of his spine and take some additional samples from his spinal fluid to see if they could figure out why there was no recovery at all.

Rob has always been someone who won’t give up and so one day after the 4 month had passed and shortly before his MRI scan, he decided to try and sit down on a chair in one of the rooms and unpack some things, to try and make a start to prepare for their baby. Rob really struggled, he was in a lot of pain and even standing up briefly to cut open a cardboard box would cause him to be extremely tired. Rob carried on with rests in between and over the course of a week felt that he was beginning to gain some strength in his legs.

He carried on working at it. He returned to the hospital for his MRI and lumbar puncture results and they advised him that the swelling in his spine had reduced and thankfully there were no signs of swelling around his brain. They didn’t find anything unusual in his spinal fluid either (this didn’t mean the cancer wasn’t there, it just meant that the treatment was fending it off for the time being). Rob informed his doctors that he seemed to be getting some strength and mobility back.

Rob's recovery has appeared to carry on. He has started to get feeling back in his legs and feet and his ability to control his bowels and bladder improved. This is a great sign, as it means that Rob will most likely meet his baby in July and that he may even be able to spend some Christmases and birthdays with him and Kimberley and help to bring up his son, if only for a short while. We know that all of this will eventually come to an end. His mobility will decrease again, he will lose the feeling in his legs and other limbs as well as his ability to control his eyes and mouth; he will lose his ability to see and speak and finally will not be able to control anything or feel anything other than pain. His brain will still be working and he will understand what is happening to him, then eventually he will pass away. He will need lots of help. So will his family.

Rob still struggles every day, and it seems that if there is something more that life can throw at him- it will! Rob has fought cancer for 7 years and won a lot of his battles, but I’m afraid now he cannot win this one.

Last week

On top of all of the above, Rob very recently had additional diagnosis. He developed extreme swelling to his right leg, which developed into extreme pain. He was rushed into A&E to discover he has DVT, a large blood clot in his groin and lots of others all the way down the one leg, others were also found in his abdomen, but the doctors were unable to scan any further.

Just days before, Rob had a stay in Freeman Hospital to investigate why he had trouble breathing. Doctors were unable to find anything on a chest Xray and they said that his infection markers were low, they sent him home the next day with antibiotics, Rob didn’t seem to be improving, so whilst at A&E the doctors booked him in the next day for an ultrasound scan of his leg, an Xray of his chest and an ECG to check his heart as his heart rate was abnormally high. This is when they found the clots and they advised that it’s more than likely he has a pulmonary embolism, where clots have reached his lungs. This can be fatal. Rob was lucky he did not die from this, he is also lucky his wife is quite intuitive with his illness and persuaded him to call the hospital to be seen about the leg pain and swelling as she knew that he may not survive the night if he was suffering from DVT, as she suspected at the time.

Rob is now on powerful blood thinners to try to prevent future clots whilst the others hopefully naturally dissolve and more than likely will be on them for the rest of his life. Currently Rob has only just begun this treatment for the DVT and PE, and so is in a lot of pain and discomfort and is likely to be for months. As well as this, there is a risk of the clots freeing up and causing further complications, or death, before the treatment is able to properly take effect. It is an extremely scary time.

I wanted you to hear Rob’s journey. He deserves people to read and understand his struggle. I realise this is a very sad story, but I also want you to know that Rob is a very positive individual and he deals with everything so well. He has a lot of strength and positivity. He continues to be the rock that Kimberley needs and she carries on for him. They carry on preparing their home for their baby, but they just have so many worries for the future.

I know Rob and Kimberley are extremely proud, independent and hardworking - but we all need some help sometimes. We can’t cure Rob, but we can give him some financial security for his family.

Contact Email:

roballenamljourney@gmail.com