It's now only one week to go until we head to Bristol for Henry's bone marrow transplant. Things are getting quite frantic with all the planning and prepping, but we are trying to make sure we enjoy this time together at home before we go.
Uh oh... infection??
The last few days have been pretty busy going back and forth to the Royal. Henry's had a CT scan last Monday as part of the preparation work before transplant. However, the results showed a few lesions in his lungs. These could most likely be part of the JMML condition he has, or a possible fungal infection. The medical teams do not want to take any risks, it wouldn't be smart to continue with the transplant with a possible infection. So they decided to treat Henry. Thankfully the medication could be given to him through his lines, but this was to happen over three mornings. He also had to get two coronavirus swab tests as he is due in theatre on Wednesday so they can put a camera down and get a closer look at his lungs.
Yes, initially I freaked out, but then was so glad they discovered this at this stage. Dread to think what would have happened if we proceeded with the transplant and Henry had an infection. So thankful they run all these pre-transplant tests!
They also carried out an ultrasound. This was to check if, he has an infection, that it has not spread to any other organs. Thankfully, praise God, it hadn't!!
Henry done so so well going through all this and getting the medication, however today he took a bad nose bleed after the coronavirus swab and the doctor has now given us some medicine to give to him at home for five days, just as a precaution as he is going to theatre this week.
The medical team are amazing. They are so responsive, explain everything so clearly and they absolutely love Henry. I'm so grateful for all the time, attention and care they give to him. As much as he hates the masks they have to wear at the moment, he does give plenty of smiles. His strength and bravery so far has me in awe. He truly is a wee fighter which gives me the confidence he will get through what's ahead.
Last week at home...
Yup, the countdown is officially on now. The treatment date has kind of crept up on us which is weird considering it's been 5 months since Henry was diagnosed. I'm still so grateful for this time of waiting, as tough as it was at times, it meant the medical teams could find out absolutely everything they needed to about Henry and his condition, and also to select the best donor out of Henry's large amount of matches (still so thankful!)...
Thankfully we have been able to get deliveries from local supermarkets as we are on the vulnerable people list, so I think we have everything we need for going to Bristol. If not, we have always believed God will provide all that we need to get through it all. We have been in contact with the house manager at Sam's House Clic Sargent and even though they are still closed due to the virus, there will be other arrangements made and we were told not to worry about all of that. There is a large group of people sorting all of these details out for us so we don't have to. I'm so amazed at that. They are doing everything to ensure our trip is as stress-free, and now as risk-free, as possible. I will be forever thankful for every single one of them. Please keep these people in your prayers, the people sorting the transportation, accommodation, the treatment itself... all these guys and more are on the front line saving lives. Their hearts blow my mind. So much kindness has been shown already and we haven't even arrived yet. All of this gives me time to enjoy time with my son and husband which is so precious right now.
So yeah, all that's left to do apart from the trip to theatre this week is to frantically pack all that we need and hope we don't forget anything! My plan is to update this journal as frequently as I can as I not only want to update you all on specific things to pray for, but I also want to share what God is doing as He has been working throughout all of this and I know He will continue to do so. He will never leave us and I trust Him completely with what's ahead.
The results of Henry's theatre visit are good and that there is no infection.
The planning and preparation goes smoothly this week.
We continue to feel God's peace and strength, and remember to take moments to be still.
That the conditioning period and transplant go smoothly.
There are minimal, or no (let's be bold!) side effects or symptoms.
Full healing for Henry (YES!)
Me and David keep as connected as possible throughout as we will not be together in the ward or at the house.
Thank you everyone! Love you all and praying you all keep safe and well.