Yesterday began the day 1 of prep. He had 17 vials of blood drawn, they did a Chest X-ray and a full panoramic dental x-ray and a vein analysis.  He also had a meeting with what he could be expecting the next 10 days and that was all after he went to work for a few hours.

 

This morning I woke up and came down to a huge 1" binder full of information for him and started to skim through it.  I read all the side effects and it put me in a tailspin. I feel like I have always been pretty emotionally stable but the past little bit, those tears come pretty easily.  I am feeling a little stressed and scared. Todd isn't...but I feel like I am enough for both of us.  I do think I handle it well on the outside but boy am I going crazy on the inside.

Todd will have to wear a mask at all times.  Especially outside because any spores from the dirt can be really bad for him.  He has to be out of the room if it's getting cleaned and then has to remain out of that room for 30 minutes after being cleaned. Only an oral thermometer and electric razor. We also need to look into a good air filtration system for our home after we bring him home.

Quoting what they said, week 1 he will do pretty good.  Just super nauseous and will be on 3 different anti-nausea medicines.  Week 2 he will be in extreme bone pain and it will be brutal that week for many reasons as you feel more of the side effects from the chemo.  That is also when he will start losing his hair and have extreme exhaustion.

They said they pretty much kill him and then build him up with all the things his body needs to keep him strong etc.  It takes a few weeks before his stem cells kick in and so in the meantime they just keep him "alive" and going in for different IV's vitamins/fluids, blood products etc until he can manage more and more on his own. 

The next few days he needs to eat a lot of food rich in potassium, magnesium and calcium. They will also be giving him IV's of those as well before transplant.

They did say they have never had anyone look so good or strong coming in for a transplant before. They were amazed at how well Todd is doing and how strong he looks.  Most have to receive a Non-tunneled Catheter in their neck but they checked his veins and he has enough good ones that they won't be doing it in his neck and just in the vein in his arm.

We have a number/triage card that we have with his patient # on it if he gets anything above 100.4 for longer than an hour and anything over 101 at any time.  There are different things we look for.  I guess they actually set a room aside with his name on it so it's always ready for him.  The doctor told us at one time it's not a matter of IF he gets admitted, it's a matter of WHEN.  So that is why that is already in place.

The next few days he will get daily injections of proteins called growth factors.  Growth factors raise the number of stem cells in the blood so they can be collected.  It will take around 4 days and if they are not getting enough in the blood, they will do evening injections as well.

He could have side effects from the growth factors which includes bone pain-usually headaches or pain in his back or hips, nausea and flu like symptoms.  

Then after that the stem cells are collected from blood through a process called apheresis.  This is what separates stem cells from the rest of the blood. The blood goes through a machine that removes the stem cells and then the remaining blood is returned to the body through the vein (I am copying from the book ;))  One apheresis session takes about 5 hours and usually 3 sessions.  The sessions are usually done once a day for several days in a row.

I have no clue why this is considered and available as an outpatient procedure.  This seems SO big and complicated and has so many risks. I know Todd wanted to be an outpatient.  Even though we say "outpatient" he goes in every single day for at least a month (until his numbers are at a certain range) for a few hours for bloodwork, IV;s blood, platelets etc, whatever his body needs. I wish I felt a little more prepared on how to take care of him and keep him safe.  I feel a little like a fish out of water with such a big procedure after reading everything. I just have this fear that I am going to screw something up or miss something that I shouldn't have missed. I am sure those fears will calm down the more we get into it all and right now it is just an overload of information.

The side effects alone are huge!  I shouldn't have read them and Todd said he isn't going to read them all.  He is just moving forward with positive thoughts. 

I know there is sacredness in suffering.  I know there are lessons learned and healing that is taking place.  I know there is love, joy and miracles that constantly surround us.  Mayo Angelou once said, "Every storm runs out of rain."  I know the clouds are coming and the storm is arriving but I also know that the rain can only last so long.  Eventually, the sun comes out.  Today feels heavy. And that is okay.... I know everything works out...and the mental and emotional exhaustion is real. I ask once again for your prayers that Todd does well with everything that is involved in this transplant and that there is constant peace for our entire family.  

Thank you! <3