Over the past week, I have been stuck in a bit of a rut. We have now been in the hospital for 5+ weeks. Five weeks of summer no less! We are definitely antsy. We've been told we would get to leave multiple times, then something always comes up to stop our plan.
Our plan....
Maybe that's the problem with my thinking over the past week. I have forgotten that we do not get to make the plans. Instead of focusing on what WE think should happen, we need to trust that God knows. He decides what will happen because he can see the whole picture. Maybe I have been questioning things too much this past week. I have certainly been asking: Why? When? How? I lived this week in doubt and disappointment. I started to lack confidence. God would certainly dislike seeing those behaviors - almost a slap in the face.
This is the time to REALLY have faith, REALLY trust Him, and REALLY reach out for His hand. I came upon the above scripture last night, when I turned to God for help. It cleared things right up for me. Josh and I need to wait for God, continue to have hope, and know that God has the power to do anything! At this time next year, this whole process will be SO worth it.
My goal for this coming week is to pump Josh full of HOPE and continue to hope myself! I will focus on how far we have come thanks to the Lord. And remember to wait patiently.
Since Thursday, Josh's "Fighter white blood cells" have gone from the magic number 0.5 (kills bacteria) to 0.9!! We have had multiple days of repeat improvement! This is much different than the prior week where we went up a teeny bit, then down to zero, and so on for seven days straight. The higher number, the stronger the immune system! Woo Hoo!
In other fantastic news, Josh's liver has improved for the past two days in a row. Hopefully tomorrow will make the 3rd day of improvement!
Our only hold up now seems to be his stubborn rash! On Friday, he got his first treatment. They basically sucked all of his white blood cells out, found the GVHD cells that are attacking his skin, medicated them, put them in a mini tanning bed to activate, then returned them to Josh's body. The entire process is way to much for me to grasp, but the bottom line is... the treatments should eventually turn the crazy cells to relaxed cells so they stop attacking his skin. And therefore are stopped from attacking other organs.
Josh's fancy procedure.
The "tanning bed" waiting for white blood cells to finish separating.
Docs came in this morning and saw no signs of rash improvement for the third day. Therefore, they decided to administer a new medication to see if it will assist. The medication adds some risk for infection (viral or fungus), but the GVHD already increases his risk, so it's basically a wash. The most important thing for you to know is that the drug is some sort of an antibody derived from a rabbit! I have been waiting all day to see if Josh starts to crave carrots or has an extra hop in his step! So far, just a fever of 101 and a very tired boy.
GVHD rash on arms/stomach
His toes are almost purple looking - I put cream on him 2x daily
Thursday night, we had some U of M athletes stop by to visit with Josh. Friday, Josh picked up his video game controller for the first time in four weeks! (This was a bittersweet moment for me, as I am not a fan of video games.) Saturday, I snuck him out of the hospital for a quick little car ride around U of M. I felt like a criminal, but it was totally necessary for his sanity AND we did not get caught! Do not tell our doctors!!!
U of M athletes
Our signed hats!
Reuniting with the XBOX
Today, Josh's dad, my mom, and my youngest two sisters came to visit. My mom arrived with a huge gift basket from some of her dearest friends full of all kinds of wonderful goodies to get us through this next week! What a perfect surprise!
I would like to thank YOU again for everything. We would never be able to get through this experience without your continuous love and encouragement!
Have a wonderful week! God Bless!
Another note - Josh has lost over 25 lbs since we have arrived despite his ever increasing diet. His legs and arms are noticeably smaller. The steroids tend to "eat" muscle, so it will be extra important to exercise. Josh has pushed himself VERY HARD over the past few days and walked across the entire hospital and back! Today, he was too weak to walk due to the long and tiring procedure. But hopefully tomorrow he will be right back at it!
ReplyDeleteJosh & Heidi, there are people that you may never meet who are praying for you both everyday. I think you can see this by the improvements in Josh's health. Sharon and I pass your messages on to the prayer warriors in our church and they are blessed by what they hear/read. Keep up the good fight in Jesus' name! Uncle Ron & Aunt Sharon and Shawn too.
ReplyDeleteHeidi Rae and Joshua Thomas...naughty, naughty, naughty - sneaking out of the hospital, rebels I tell ya. ;)
ReplyDeleteFor real though, thats AWESOME! I'm glad Josh was able to get some fresh air and the weekend was beautiful so I'm sure you both loved it!
Thinking about you both all the time. I LOVE hearing about all the improvements, so exciting! Love you lots!!! xoxo
Hi Heidi,
ReplyDeleteYou are doing an amazing job as supportive wife! I really enjoyed hearing that you snuck your hubby out of the hospital...reminded me a lot of a big black lab (Bella) that came to visit Lindsey.
I can tell by your humor and faith you'll be ok. Really antibodies derived from a rabit? You'll have to keep us posted. I read your entries and I can tell that you are a super caregiver! Biggest obstacle is not having control of plans. Putting your faith in God will help you remain strong and give you two hope.
My mom has a friend that went through a similar battle that Josh is going through. Her friend is now on the golf course once again enjoying life.
Love you guys...Faith~Dar