Wife headed for SCT

Hi again Travt77 and welcome across to our little corner of the Big Mac Community.

I am sure that some of the others will be along to say Hi at some point.

I have bumped a few ongoing posts that are worth a look at and as always you can browse through all the other discussion by going into the ‘discussions’ tab. You can also use the search tool at the top of the group page for subject searches.

This is the most up to date Macmillan Allo SCT info PDF here.

Great that you have done your profile, this helps a lot.

Always around to answer questions.

Hi Travt77,

Another welcome from me. It is definitely a daunting time but I’m hoping you’ll find a lot of support here, so please feel free to ask away, share updates, vent or get out any anxieties, this is what this space is for and hopefully you’ll find between us we’ve got a pretty good experience of some of the things you might come across on the SCT road.

Wishing you and your wife all the very best,

Greg

Hi Travt77 ,

and another welcome, though from the Mum of a lass who went through it all and is still around to tell the tale! 

hopefully things will work out for your wife, having a donor lined up ready is a big plus!

I'm sure her team will work hard to ensure all goes to plan

hugs xxx

Thank you for your kind welcomes.  I am glad to have a place to communicate with others who can relate to what we are going through. I will surely need to be able vent or just ask for reassurances along the way. 

It seems that the roller coaster is currently on a flat section of the track. I have been so stressed and worried during the last two months, but now she is home and feeling a bit better and I am able to focus on catching up around the house. I know this lull with only be temporary, and the worries will be back soon enough when the SCT begins. 

I will definitely be using this forum for support and thank you all be being so willing to support a stranger. 

So tomorrow my wife goes to have a lumbar puncture and another bone marrow biopsy. 

The biopsy is just standard for the transplant team in preparation for the procedure. 

The LP is unfortunately due to headaches my wife has had for the past week and a half. They are concerned the leukemia has spread to her spine and/or brain. 

This just gets more dreadful each time we go in for a hospital visit. Has anyone experienced spinal/brain leukemia before? 

Jamie, just realized I hadn’t shared her name, is taking all this like a true warrior. There are days, however, that she simply can’t hold the emotions in and those are the worst days I’ve ever had.  We cry together, then we’re good for a few days. 

I can’t even describe the exhaustion that comes from trying to stay positive. I can’t imagine how tired and scared SHE must be every minute of every day. It breaks my heart to think about. 

Hi Travt,

I am really sorry to read about what Jamie is going through at the time - I’m really hoping all went well today. I don’t have any experience of spinal/ brain leukemia but just wanted to let you know I was thinking about you. The SCT is a massive rollercoaster, and not a fun one. You can’t be positive all the time. I think sometimes all you can do sometimes is keep holding on and hope you don’t fall off.

Wishing you and Jamie all the best

Greg

Thinking of you both and hoping the tests today were all ok.

sending hugs xxx

Hi Trevt77,

Sorry for not responding to your post sooner but I have been off site for a few weeks as my wife needed a holiday and we took time to catch up with our grandchildren.

Sorry to hear the bumps on the road keep coming up. I have actually read in the AML group about cells spreading to the spine and/or brain but this was dealt with positively. So let’s see what all the tests say and what the plan is to move this all forward.

This is a rough journey, a two steps forward and sometimes two back but during this time you can only put your hope and trust in the experts.

I will always say that the person sitting beside the bed looking on has as hard a journey than the one in the bed. Jamie has no control over what is going on and will be in a little mind bubble, most likely not sharing all her thoughts and she will not be expecting you to be super man 24/7 so it good to let’s some of the emotions out.... we cried bucket loads..... but also found the special times that made us into who we are today. Keep your eye on the goal in all this and hang in there.

Thanks for the support. Jamie had the bone marrow biopsy performed, but the doctor postponed the lumbar puncture and instead had a CT scan of her brain ordered. She has had a nonstop headache for a little over a week and he is concerned she may have bleeding in her brain due to low platelets. We are waiting for the results today. If negative, then the LP will be Friday. They didn’t go into much detail of how they would address an actual subdural hematoma if found. So the hits just keep on coming! 

On a good note, her counts are all holding steady, the leukemia cutis “rash” has completely faded, and they took her off all antibiotics/anti fungal meds because her neutrophils are up. 

So, been a while since I checked in here. Been a roller coaster, but yesterday my wife received her SCT! She is doing well. Only some stomach discomfort for now, but we know that the radiation and chemo will really set in around day +5. 

Hoping she avoids the GVHD. But overall thankful she has made it this far without too many issues.