It has been a while since I have written a blog. There seems to have been so much going on & at long last I am able to sit back on the couch & not immediately pass out from absolute exhaustion. I thought it was time to write a little catch up on everything that has happened…
We reached the target needed for the stem cell transplant! This still feels like an absolute dream & I have been blown away by everyone’s generosity. This is my last shot at “normality” & I didn’t know if I would ever get the opportunity. It seemed like such a far away dream & something that would remain that – simply a dream. My family, friends, & strangers that shared my pleas; organised fundraisers; sent messages of encouragement & helped financially – you have all contributed towards saving my life & for this I will always be grateful. How do I even begin to thank you for putting my Christmas Wish at the top of your list? My heart is so full & I can only pray that your kindness will be returned to you ten-fold.
We had a great fundraising event at Jynx Nightclub in Lonehill called The Snow Ball, & it was a great night filled with laughter until my cheeks hurt; dancing until we fell over our own feet; & many, many snowflakes. We were celebrating a life; we were celebrating a second chance; & we were celebrating the support that has been shown by a community of wonderful people.
Now, a bit more about my transplant. This is why I have been quiet & simply trying to process what is going to be happening. This transplant is my chance at “normality” once again, but it also comes with its risks. We went to see my doctor & she drilled this into us. We need to be aware of the complications & high chance of infection. Out of the 20 people that have had this worldwide, 9 have survived. This is 45%. The other 11 didn’t make it due to infection & their body simply not coping with what has happened. This absolutely terrifies me & is a reality that I may be facing.
I will be admitted early in January 2019 for plasmapheresis – we are thinking we will do about 5 rounds to try get me in fighting shape for what is to come. We are very lucky as I am having this in the hospital that is literally around the corner from me so I can see my family & friends during this hospital stay.
Once this is done, I will start on injections to help release my stem cells into my blood. These will then be taken out & put away safely for when they will be transplanted back in. This is not a painful process – much like giving blood – so I am not concerned about this!
Then begins the tough part. We need to do a hard reset of my body – press CTRL ALT & DELETE to restore the antibodies to factory settings & hopefully get my body to function as it should. This involves chemotherapy (yes, like what they use with cancer patients) & admission into isolation. This will destroy my immune system & means that there is a high chance of me picking up any goggas floating around. I need to be careful for 3 months following this & wear my mask if I leave the house – which I have been advised not to do for at least a month following my final chemo treatment.
Once the chemo is over, then the actual transplant happens. We use my own stem cells (that have been “cleaned”) & these are put back into my body just like they would when you are receiving blood. It sounds pretty simple doesn’t it?
Because this is the first time it is being done in SA for Myasthenia Gravis, there is a lot of research & back & forth to ensure that I will be getting the best possible care & medication. My team of doctors are one in a million & I know that this would not be possible without them.
So, this is what is happening. I have come to spend Christmas with my family so I can see them all & pour love out over all of them. I have accepted that this could be my last one, although am hoping against all hope that it isn’t. I have dreams, hopes & aspirations. I have so much to be grateful for & know that I could never ever ask for a better family – & extended family that I have simply forced my way into their lives. I live a life of happiness, acceptance & growth; & have truly realised that life is a gift that you need to appreciate every day.
Thank you for reading this, crying with me, & laughing with me. Thank you for encouraging me, supporting me & just being there for me & my family. Thank you for being part of the #SaveMegs movement & helping my Christmas Wish become a reality. 2019 is going to be a year of miracles & happiness!
If you would like to read more, my fundraiser is here. I won’t be able to work for up to 6 months following the treatment due to recovery, & thus financial stress is a definite reality.
Have a very Merry Christmas, appreciate the time with your loved ones & travel safely wherever you are. Sending so much love x