Michelle’s Story – Thicker Than Water
This month, I’d like to introduce you to my guest writer, Michelle.
When Michelle got in touch, she was in the process of screening to see if she could be her Mum’s stem cell donor – she wrote this post DURING the actual procedure after she was found to be the best match after a world wide register search for a donor. As she explains, she is a half match.
(Michelle mentions she injected herself to stimulate stem cell production – if you are found to be a match – there are a few options for these vital injections – a nurse can even come to you at work to minimise any disruption to your day.)
Here is a lovely picture of Michelle’s Mum receiving her life saving stem cells. And below, is their story, in Michelle’s words.
I am writing this hooked up to the machine that is busily filtering my blood and removing my stem cells in preparation to be delivered to my mum tomorrow evening. It’s taken a long while to get to this point, so it feels like a bit of a milestone.
After a long period of illness with vague but debilitating symptoms mum was diagnosed with aggressive systemic mastocytosis in November 2016. There are arguments over whether this classified as cancer (it doesn’t have the ability to metastasis which is one measure of cancer) but either way this is an incurable, severely life limiting illness. Mum was put on some chemo to try and reduce the volume of mast cells in her body, with the ultimate aim being to give her a stem cell transplant (what most people would call a bone marrow transplant).
There are 3 options for stem cell donation, in order of preference: stem cells from a brother or sister, stem cells from a matched anonymous donor from the register, and finally stem cells from a child (known as a haploidentical donor and only a half match).
Mum has a complicated family history but her brothers were unfortunately ruled out, with one brother proving to be a match but unable to donate due to ill health. While this process was going on the registers were being searched for a donor. We had been reassured that mum should be a relatively ‘easy’ match, being a white European women with no unusual ethnic background (unfortunately a lot of ethnicities are under represented on the donor registers). Despite their confidence it appeared mum actually had an unusual tissue typing, so there wasn’t a 10/10 match (ideal) or even a 9/10 match (which they still use). So we needed to resort to option 3, to work out which of mums 3 children would be the best option.
We all had to provide blood samples, provide a brief medical history and a whole lot of behind the scenes testing got underway. The tests were investigating everything to determine who would be the best match, and it was eventually decided that I would be the one to donate.
After a thorough work up with my donor doctor checking my heart, lungs, medical history, taking 14 vials of blood I was given the all clear to become mums donor.
Mum was admitted to the haematology ward at the Churchill Hospital on Weds 2nd of Jan to start the chemo to destroy her immune system ready to give my stem cells a week later. Mum had a tough few days with the chemo (part of the nature of her disease means she can be very allergic to things and there is a possibility she was allergic to one of the chemo drugs, and so was more poorly than expected). But mum has coped amazingly well, taking it all in her stride.
I had to start injections of GCSF (granulocyte colony stimulating factor) for 4 days before I was donating. This involved injecting myself in the stomach with 2 injections each evening to increase the number of stem cells my body produces ready for the donation. The main side effect of this was bone pain due to the increased volume of stem cells within my bones. This was bearable with paracetamol.
Tuesday 8th Jan was the big day for me. After a tough weekend with my little girl waking up with chicken pox on the Saturday (and a slight panic about my donor status and whether I could visit mum) I made my way to Oxford on Monday evening ready to be at the donor centre 7.30 on Tuesday morning.
When I got to the donor centre I had a big comfy chair as my home. A needle was put into the crease of my left arm (so I wasn’t allowed to move it) and another one into the wrist of my right. They used a local anaesthetic so there was just a bit of a sharp scratch and the whole thing was relatively painless (I was a bit unlucky as I don’t have great veins, so this part of the procedure wasn’t as straightforward as it should have been. But don’t let that put you off – I was unusual!) Once the needles are in the machine takes the blood from one arm, spins it around and removes the stem cells and some plasma, then returns it into the other arm. Besides sitting still for a few hours it’s a really easy process. I was given a few infusions of calcium when I experienced some lip tingling (administered through the cannula in my right wrist so not painful) as the machine can reduce the levels of calcium in your system. The process can take 1 or 2 donations depending on the number of stem cells they collect and the number needed by the recipient. An hour after finishing my collection (which took about 4 hours in total) I received a phone call to let me know I had donated enough! They had collected 4.2 million stem cells and needed 4 million. So I only needed one collection!
The next part of the journey started on Weds 9th Jan, which was a big day for mum. As mum was receiving a haploidentical stem cell transplant she needed to have a dose of radiotherapy to her whole body, known as Total Body Irradiation or TBI. She had previously attended the radiotherapy department at the Churchill to receive a ‘test dose’ to enable the radiographers and physicists to plan how to accurately deliver the radiotherapy mum required. Mum had to lie on a treatment couch while she was set up in the same position as she had been in for the test dose. The radiographers positioned the linear accelerator as required and left the room to deliver the treatment. Mum couldn’t feel anything during the delivery of the radiotherapy, which took 15 minutes from each side. The whole process was painless and took an hour in total. Once this was done, mum was back to the ward to receive hydration and a variety of ‘pre meds’ ready for the stem cell transplant.
At 4.30pm the bag of stem cells mixed with plasma arrived, and with a lovely sunset out the window and Stevie Wonders ‘happy birthday to you’ playing in the background mum received a 30 minute infusion of the stem cells that will hopefully save her life.
Now we just have to wait and hope the stem cells are accepted. The incredible doctors and nurses will monitor mum and deal with any issues as they arise. And mum is doing an incredible job of remaining strong and taking all of this in her stride. Hopefully in another week I can update with some good news. In the meantime – if you’ve taken the time to read this – please, please sign up to donate your stem cells. It’s so easy. While I have been able to donate to my mum I am not the best choice, but there was no match on the register. You can be the person to save someone’s life. That is a pretty incredible thing to do!
Thankyou so much Michelle – Thankyou for writing this DURING the retrieval. You are a star & I am sure everyone reading this will be wishing your lovely Mum all the very best for her recovery xxx