Sunday, February 10, 2013

Stem Cell's and a bad week

OH MY - We have been busy busy busy.  First of all we have been hit with another round of "fevers" :( A week ago Abigail had a fever for 4 days. Then Isaiah got it for 4 days, now Michael has it, and today Isaiah's came back)!!!! I am going crazy. I can't get anything done, I can't go any where, I can't run my errands, I can't go grocery shopping!!! It has not been a good week!! Ok - now that I got that out:

John has been OK. Barely OK. His neuropathy is still pretty bad. It can kind of be controlled with pain meds, but it really really hurts him.


  • Last week Friday morning we had to start his shots to prep for stem cell collection. Home health brought them by Thursday night. Friday morning we went to Rachelle's (my sister in law who is a nurse), so she could show me how to give them. He had to have 2 every morning. I was a little nervous, but was surprised that it wasn't bad at all. I had no problem giving them and never even bruised him. 
  • Last week Saturday John was having back spasms - they actually started Friday morning but were getting worse. I ended up having to take him to the hospital. It was like he was having contractions and would have to stop everything and have to breathe through them. We spent 4 hours at the hospital and met with a PA.  They did several tests and could not figure out what it was. In the end he was sent home with stronger pain meds and to see what happened. Gratefully after 2 days they stopped.
  • On Monday he had to be at the hospital at 7:15 am. Gratefully John's brother Jeff works downtown and was willing to go in early and take John to the hospital. I have no idea how I could have done it and gotten kids to school on time. John was getting his PICC line switched for a central line in his chest. They needed the bigger line for his transplant. His surgery was postponed 3 hours because they were busy saving a life :)  No biggie. After I got the kids to school I drove to the hospital and we played Phase 10! He finally went in and it went just fine. They do it under conscious sedation. He was supposed to recover for an hour and then go home for the day. But they had run his lab work that morning and his labs were great. During his surgery the BMT (Bone Marrow Transplant) Unit called down and said they wanted him upstairs when he was done. They were supposed to start collecting stem cells from him Tuesday but wanted to start because his body was ready. That ended up to be a very long day for John. He was set to be at the hospital for 3 hours and was there for 14 hours!! He went up to the BMT Unit and they hooked him up to the machine to collect stem cells. They collected over 5 million that day which was amazing. Especially since he had not even had all the necessary shots. There hope is to collect 10 - 15 million over 5 days. 
  • On Tuesday Jeff took John to the hospital again. He got hooked up to the machine and had a great day - as far as collection. He was on the machine for about 5 hours and they got 16 million stem cells. The good news was he was done. The bad news was that he was not feeling well at all. He was super nauseas and literally puked while hooked up to the machine.  We got home that afternoon and he was really weak and tired and not feeling well. Nothing sounded good to him and he could not eat anything.
  • Wednesday he was so glad to not be going into the hospital. He was not feeling well. (And by this point we now had 2 kids at home with fevers). John laid around all day and rested and really fought eating. He was doing ok drinking but food was not his friend. 
  • Thursday was a continuation of the same thing. Other than he also spent 4 hours at the dentist. All dental work has to be done prior to the transplant. He was able to eat a little that night and was feeling a little better.
  • Friday he was not feeling well but did get up and ready. He was able to go to the temple for a little while. But it took a lot out of him. But he ate a little. Over these past few days he might have consumed 2000 calories in 3 days.
  • Yesterday and today he has been starting to feel more like eating. But still not normal amounts. But at least he is getting food in him. We are pretty sure it is a side effect of the neupegen shots and mozibil shots which he had for his stem cell collection.
So that is what this past week has been. We have been blessed with great friends, meals, cards, treats, car rides. I am so so grateful for our friends and neighbors around us. They are amazing.

I had a very hard week emotionally. I constantly was on the verge of tears. I am SO tired of all the complaints for everyone. So tired of making food and throwing it away because John and the sick kids don't want it. So tired of solving everyones problems and not getting enough sleep. So tired of taking care of everyone all day and night. SO tired of some people who are pretty insensitive to all we are going through. Frustrated that we had a ward adult Valentines activity that John and I could not go it. So tired of feverish kids . . . I had had it. This is HARD! And I think one of the hardest things for me is knowing it will only get harder. I am doing better today. And I do count my blessings. But some days, weeks, are just so hard. 

3 comments:

  1. What can I say but I love you! I'm so sorry that life has become so difficult on a daily basis. I hope when your sisters come to help while John is in the hospital you will get some well deserved rest and "me time".
    I'll do everything I can to help you when I'm there in march.
    Hugs, Christy

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  2. We love you! We think about you all and pray for you all the time. I'm so sorry you are having to go through this.

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  3. I wish that I lived closely to help you out when you needed it. I cannot imagine what it is like to be going through such a hardship. You have every right to feel frustrated - and blessed! I love you guys and continue to pray for you daily.

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