Mark's stem cell journey

Mark’s Stem Cell Journey 

In January 2023, a routine cholesterol test unexpectedly uncovered a low neutrophil count.   Following further tests, Mark was referred to the Royal Devon and Exeter Hospital for a bone marrow biopsy. In July 2023 he was diagnosed with Myelodysplastic Syndrome (MDS) a type of blood cancer. Treatment began in August 2023 with five weeks of intensive chemotherapy on Yarty Ward.  A second, shorter round of chemotherapy was then followed by blood transfusions and regular check-ups as the search for a stem cell match began.  A match was finally found in late 2023 and Mark was admitted to Derriford Hospital in January 2024 for the stem cell transplant process.

Mark very kindly shared his diary with us, so that we could have a window into his experience.  Each day Mark would record updates on the progress of his treatment, whilst also trying to find positive outcomes each day, whether that was a call or visit from family, clean PJs or a win for his favourite football team Manchester United. 

Note: Mark is very keen to stress that every person’s journey is different - his experience of the transplant ordeal will be different from another’s.

Throughout his treatment, Mark had the steadfast support of his wife of 40 years Sarah, as well as his three children, brothers, sisters and close friends.

• Day 1 at Derriford 
  Today will be a settling in day.

  Mark is lucky that an isolation room is available for him. 
  
  Sarah has prepared an envelope of daily thoughts to read to keep me going. I will certainly need them. Such a lovely thought!!

  The notes suggest things to look forward to, including a family wedding, going to a café, enjoying the sunshine, giving something back to ELF, eating home cooked food again and taking joy in summer days.
  
   

• Day 2
  Conditioning chemo begins, to prepare Mark’s body for the transplant.  He is told to expect a Fairly light start for the first four days, then two days of intensive chemo likely to result in difficult side-effects. 

  Have several visits in the pipeline from siblings. Very grateful to all of them for making time to contact me!!  A real bonus.
  
   

• Day 6 (5^th day of chemo)
  Two x chemo with likely reaction to one of them causing shivers and shakes.  Remember this is to be expected, and it is only temporary!  Stay with it and persevere.  YOU CAN DO THIS! 

  Following chemo, Mark’s BP drops, causing him to become unsteady on his feet, then to fall and hit his head. An ECG, X-rays, CT scans and two hourly observations follow, to ensure that he is well enough for the transplant to go ahead the next day. 
  
   

• Transplant Day = Day Zero ‘A new birthday’
  Excited but anxious.  A new beginning and a brighter future is hopefully on the horizon. The transplant itself is an anti-climax, only 15 mins long. 

  That evening could not concentrate much, so calls, texts suspended.
  
   

• Day Zero +3
  Mark is now neutropenic, with a raised infection risk, so PPE is necessary for visitors. 

  Still feeling incredibly tired with little energy to do much…A few bursts of conversation before reverting back to sleep.
  
  The treatment process over the first two weeks is draining, with early starts and late finishes, lots of medication and infusions of blood, platelets, sodium, potassium and cyclosporin, which sometimes take three to four hours to administer.
  
   

• Day Zero + 4 

  A family visit ‘gave me comfort, support, encouragement and wiped away my tears!  Grateful. Had a day of long, wearing infusions, pills, sachets etc.  Worn out again.  Did spend a lot of the day asleep.
  
   

• Day Zero + 6
  A late night of transfusions led to a rather disturbed night...slept on whilst obs, bloods and first transfusion [of the day] done.

  Mark is referred to a dietician due to weight loss: they advise him to eat anything he can manage, and they provide a range of different snacks.
  
   

• Day Zero + 10/11
  written by Sarah: Spending most of days in bed…not feeling up to writing journal or talking for too long on phone.
  
   
• Day Zero + 12
  Consultant told me I was on the cusp of recovery as my neutrophils had improved which was great to hear.  Hopefully this means that engraftment has begun and my donor’s cells are now doing the work…So pleased about that but not going to let myself get too carried away.  Need a period of sustained improvement. Drs believe it will come.
  
   
• Day Zero + 13 
  Chemo has hit my hair and it is beginning to fall out.  Action to be taken ASAP.
  
   

• Day Zero + 19
  Planned discharge from the ward to the Hearts Together Hotel next to Derriford. 

  Discharge is the beginning of the 3^rd stage of the New Normal life…Anxious but excited to be getting out of my room.

  Doctors advise ‘don’t get too disheartened if you end up back in hospital in the next few months.
   

• Day Zero + 20 
  Went out for a walk with Sarah – first one for four weeks!  Bit doddery but managed it.
   
• Day Zero + 21/22
  A pre-transplant letter arrives in the post, reminding me how serious a condition I have and just how significant and potentially life-threatening the process was…Still a long road to go and many things could still go wrong.  So need to stay as healthy and as focussed as possible and believe 100% in this process. Congratulate myself on coming through it and give thanks to family and friends for their massive contribution!!
   
• Day Zero + 26 
  Generally feeling tired and achy.  Need to remind myself I am still only one week out of hospital and my body is adjusting to doing more.  It will take time for all this to settle down, so stay patient!!
  
   

• Day Zero + 35
  A string of appointments in Plymouth for bloods, review and Hickman Line removal.  Left hospital exhausted and went home to bed. 

  A clinician advises Mark to view these review visits as a day of work.

  When travelling to Plymouth for follow-up clinics, Mark and Sarah often drive out into Dartmoor between the first appointment for blood tests and the review with the consultant later in the day, sitting in the car to eat lunch, or to walk if possible.  
  The frequency of reviews drops down to weekly, and then fortnightly, and Mark reduces the number of entries in his diary, as life slowly begins to include more normal elements.
   

• Day Zero + 182
  Chimerism is the co-existence of cells with different genetic backgrounds (donor and  recipient) in the same person ^1.   

  Once off his immunosuppressant medication, Mark’s blood test results mean that he needs to have a Donor Lymphocyte Infusion using material which was gathered from the donor at the same time as the stem cell harvest; the aim is to improve his chimerism levels, increasing the percentage of donor cells in Mark’s body to a level higher than the 80% recently measured.

  Obviously this has caused a little anxiety for me but it is something that will help the process so I must embrace it!
   

• Day Zero + 193
  Mark starts the process of re-vaccination, working his way through the childhood vaccination programme over the course of a year, to boost his protection from vaccine-preventable diseases.
   

Mark offers advice for others embarking on the same journey:

• LISTEN to the nurses and clinicians.
• Isolation is difficult to manage at times – regular familial contact was very important.
• Remember, all this is temporary!
• Ask questions and let staff know of any issues.  Look out for constipation & nausea.
• Try to eat anything to combat loss of appetite and loss of weight.  At hospital, try the Halal menu!
• Tiredness and sleep are things that you will succumb to.  Snatch sleep when you can.
• Get out of bed as often as you can, even if this is just to sit in the reclining chair. Get dressed, if possible, get washed whenever you feel strong enough.
• Manage your central line carefully – it is your friend!  Take practical measures like having clothes and PJs with buttons for easy central line access.
• Try to move feet, ankles and legs to prevent swelling.

One of Mark’s thoughts for the day “Giving something back to ELF” came to pass:
he is now one of ELF’s most regular volunteer drivers!

¹  Is my DNA different now? How a stem cell transplant changes your biology | Anthony Nolan