Road to a BMT... oops just got there (Day+20)

[NMMP]

What a whirlwind - things have been all over the place since my last update 10 days ago, where do I start.

Mark has been up and down, with fever infections, nausea, weakness - all over body pain and no appetite.

We did have great news last week on Day 14 is was confirmed that engraftment had taken. We were over the moon - engraftment should happen between day 14 - 17 and we were right on target on Day 14. The indicator is Mark’s neutrophils jumped from .6 to 1.20 over night, any jump above .5 is considered successful.

Previous to that news Mark was so rundown and when the Dr. showed us his latest blood work he could not contain his smile through the mask and isolation get up. We were truly overwhelmed and we started to discuss possible discharge for Monday/Tuesday of this week.

What an impact the news had on Mark and myself - naturally Mark started to feel anxiety about going out into the “real world” and dealing with all the possible threats out there. But we discussed it at length and set up a plan together on how we would approach this HUGE step in this very long and demanding 2 year process.

On Friday he even had a cheese pizza that he had been craving.

Saturday evening brought on high fevers, exhaustion and extreme nausea and another CT of the chest and we got a confirmation of pneumonia - CRAP! 2 steps forward 1 step back as they say.

Mark had been dealing with an infection and antibiotics were helping but the fever kept coming back - he went through an invasive test called a bronchoscopy to get a sample from his lungs so we could culture and know EXACTLY what this infection is.

The positive is that his platelets continued to go up and his WCB and neutrophils were slowly dropping due to the infection. They had stopped all IV meds and Mark had been moved to oral meds, another big positive step and no more shots of Neupogen.

As of yesterday WBC have gone up as well as neutrophils (all on their own) Mark has really struggled with fatigue and weakness but we are back on track. It took a few days, increase in antibiotics, inhaler treatment (3x a day for 2hrs) for RSV of the lungs and a blood transfusion due to low hemoglobin (under 70). But again watching courts go up on their own is really a magical thing and I think I saw a smile on Mark’s face before I left last night.

We were very sad and disappointed with this set back but engraftment is still occurring and he is in the right place and it would have been far worse had we been home and had to go through emergency.

Apologies for the lengthy post but I’ve not been able to wrap my heard around the last 10 days.

Again thank you for the support and kindness and allowing me to share this experience with you.

Take care,

NMMP

[Newdawn Administrator]

I can only imagine what you’re both going through NMMP and this pneumonia set back is the last thing he needed as the engraftment was starting to show signs of working. However, there are some really positive signs now with his blood results and hopefully you’ve seen an end to the setbacks.

Emotionally this must be beyond tough on you both. Being in isolation and fearing contamination from the outside world must be so hard for Mark but it sounds like you are weathering this together and looking towards the future.

Thanks for keeping us updated and sending huge best wishes that all progresses successfully now.

Newdawn

[NMMP in reply to Newdawn]

Thank you Newdawn - 1 day at a time and sometimes it is 1hr at a time with this process.

[Justasheet1]

God bless you both. I’m rooting for you guys. I’m glad to hear that there was some good news too.

Jeff

[fell]

You are both superheroes! I am in awe of your strength and courage.

Please continue to let us know how Mark is doing.

Wishing you both all the best.

Fell

[UK-Sparky]

Mixed news but overall positive progress, stay strong

Hugs and prayers

Milton Keynes Marc

[Hoffy]

I am glad he is overall doing well!

[sumok]

you can bet i am wishing you and Mark well constantly! 󾬑

thanks for the update. the day he walks out of the hospital is coming, and it will be amazing. i say this a lot - but do remember to take care of yourself. ask for help from friends and family - and strangers. i could have asked for more than i did.

[NMMP in reply to sumok]

Thank you sumok - your encouragement has been very helpful.

I’ve not had a chance to decorate our home for the holidays and have asked my wonderful sister and a couple of girlfriends to come over this weekend to help me out.

This will help me a great deal especially when the kids get home from university later this month.

NMMP

[sumok in reply to sumok]

i can just imagine!