Merry Christmas! Jared's 42nd day Post Transplant!

Merry Christmas!!! Today is Jared's 42nd day Post Transplant!! I have not blogged much over the last couple weeks for two reasons......One is that Jared is doing great and feeling great! Second, that I have been incredibly busy with Christmas and wedding preparations!!

Jared has been improving so much every single day! He is getting more energy and is feeling more like himself. Last Thursday Jared was able to have surgery to get his port and hickman out of his chest and he could not be happier! Getting these two things out was a huge milestone to feeling healed, healthy, and done with cancer! Now Jared can finally shower normally and he is so happy!!

Jared excited and ready to go into surgery! 

Last look at Jared's Hickman! 

Last look at Jared's Port! 

Last Look at Jared's Line & Port before they are gone FOREVER!!!

All Done!! 

Jared in recovery! Pretty sleepy stil! 

Ready to go home!!!

On Friday of last week, Jared and I went to his discharge conference with his transplant team! We sat in a small conference room and went over all the rules and information on how to live and keep Jared healthy for the next several months! We said thank you and goodbye to Jared's transplant doctors and nurses. It felt unreal! As we sat and listened we could not believe that we were finally at the spot where we were leaving the transplant floor for good!

Since we spent almost a month from mid-November to the start of December in the hospital and busy with so many appointments, we realized about two weeks ago that we had a ton to do! We had no Christmas presents, lots of unfinished wedding projects, and not very much time! The last week and a half has been a whirlwind of fun and planning! Jared was able to get all his Christmas gifts together and I worked frantically on all the last minute wedding stuff!

We are so beyond thrilled to say that today is Christmas and Jared is feeling GREAT! He is happy and healthy and ready to move on from all the struggles we have been facing for the last two years! We are also so excited to be able to say we are getting married in just three short days! It seems unreal that the day will finally be here! After having to change the date of our wedding 3 times, and now changing the wedding all together, we are excited that we can even have a wedding. This Friday we will celebrate with just family and close friends in a wonderful celebration of our love for one another as well as celebrating Jared's health!! After our short honeymoon we will be moving back to Idaho to finish school! Jared will be able to finish his last few classes doing independent study classes and I will be a traditinal student! We are so excited to be finally starting our life together! We are excited for all of our family to be coming into town over the next couple days and be apart of our special day! We wish that we could have the huge wedding we had originally planned including everyone near and dear to our hearts but because Jared is still recovering and his immune system is so new, we had to keep the wedding small.

We are so thankful for everyone's love and support and prayers through this rough time. Looking back over the last two months it feels like a really bad dream, but so worth it to be at this happy point that we are finally at! We will post wedding photos and more updates over the next couple months as Jared continues to recover from his transplant! Continue to pray for strength and full recovery for Jared over the next year!

Update Day 31 Post Transplant!

Jared got out of the hospital on Wednesday at around 10 pm!! The doctors came in and talked with us before we left and they were so happy that Jared was feeling so much better and that his levels were still decreasing! As we left the hospital Jared and I were so excited! When we found out he had to go back in we were so scared, and so unsure of how long we would be their so the fact that it was only 5 days was amazing!  Yesterday, as we went to our first appointment back at the SCCA, as the nurse and doctor on Jared's transplant team walked in they were amazed with how much better Jared looked!  After they did all their talks and evaluated him, they concluded that as long as we have no more complications Jared will be discharged from the transplant team/floor next Friday the 21st! This also means that Jared will finally be getting his Hickman catheter and port out of his chest! He will be able to shower and move around normal! Jared is so very excited about this news! Since getting out of the hospital Jared has had much more energy then he has had in a couple months! He has started to get his appetite back and fast! He is eating much more and even has real cravings. Overall, Jared just seems and feels SO much better! Continue to pray that Jared does not have to face anymore complications and that it can be smooth sailing from here! I cannot believe that Jared is finally at this point of the transplant process. I am so thankful for his strength and courage through this entire process.

Day 28 Post Transplant

Today is Jared's 28th day post transplant. We are still at the hospital, but Jared is doing much much better. So, pretty much we came to the hospital on Saturday morning and the doctors were extremely concerned by how high Jared's liver function was. Over the last couple days Jared has been given lots of different medications to try to lower his liver levels as well as just being very closely monitored. They have now concluded today that Jared has something called SOS Disease. This means that Jared's liver was very hurt and damaged from the amount of Chemotherapy that he was given before his transplant. This happens to about 10% of all people that have a Stem Cell Transplant, so it was not a huge surprise to doctors but they were still very concerned. The main drug that Jared has been getting is what they use when someone comes into the hospital and has overdosed on Tylenol. On Saturday when he was first given the drug he had a crazy reaction to it! He was having trouble breathing, his head was pounding, he got extremely hot and started vomiting. It was super super scary the first time that I had to rip the emergency cord out of the wall and 10 nurses ran into our room and hooked Jared up to oxygen and gave him a huge dose of benadryl. Now before and during every does Jared is given benadryl so this will not happen again. 

The doctors came in this morning and they are very happy that Jared's levels are trending down and pretty quickly so they are hoping to give him one more dose of his medicine and then hopefully late tomorrow night Jared will be discharged!! We are very excited that he is getting out even faster then we were hoping for!! The last few days have been full of uncertainties and fear, but we are happy with the outcome! Jared is feeling pretty good otherwise, he is working still on eating more and walking as much as possible. Keep praying that Jared's liver continues to heal, his swollen fluid filled tummy will go down (right now they think he has about 7 to 8 extra pounds of fluid in his body)! We are very grateful that Jared is young and that his body was able to handle this unexpected complication. The Doctors seem amazed at how well he is healing compared to many other cases they have seen! Hopefully each day Jared will just continue to feel better and better! 

Day 25 Post Transplant Update!

The last several days have been a little bit bumpy and not as we had hoped and planned for :(! On Tuesday night of this last week Jared's stomach started hurting a lot and he was not able to eat at all!! When he woke up Wednesday morning it was not better, and he was having trouble moving and walking around due to his extreme stomach pain. Jared had a blood draw appointment that morning and he was still really really struggling so I drug him upstairs and they took him back to the transplant floors triage area. His pain did not seem to surprise the Doctors because the chemotherapy Jared had before his transplant is terrible and can affect your tummy for a long time. They did some X-Rays, and gave him heavy pain medications and sent us on our way. On Thursday he was still in pain, but not nearly as much. Yesterday he was feeling even better, still some pain and his stomach became very very bloated. Last night Jared’s team nurse called us and said that his blood work came back with his liver function very high and inflamed and just not doing well. We rushed to UW to have an ultrasound and it confirmed that his Liver is very inflamed and angry, so much that it is at a dangerous level to do serious damage to his liver. 

Jared's Ultrasound 

SOOO they told us that he needed to be re admitted into UW hospital in the morning. So this morning we arrived to UW at 9 am and Jared was readmitted and we are now living again in the hospital just right down the hall from our old room. The Doctors came in and explained that what is happening to Jared is a side effect that can happen after you have a transplant with such terrible Chemo before. This is not a common side effect but they have seen it! They are starting lots of different medications that will hopefully start to help the liver go back to normal fast! 

When Jared found out that his liver was sick and that he had to come back into the hospital, he was extremely disappointed and very sad. Jared was feeling great when he got out of the hospital and to not feel better ever single day is very discouraging. The doctors are not 100% sure what medicines are going to be successful, so pray that the one's they try are going to work fast and great! 

Jared's Tummy is SO Swollen! 

This was a very unexpected turn of events, but hopefully it will be short and go smoothly! Jared is so strong and now his little liver just needs to bed on the healthy bandwagon!!! Keep praying for Jared as he trying to recover and mentally recover from this small delay! 

Day 21 Post Transplant!

Today is Jared's 21st day post transplant! Jared has had some great days, as well as some really rough days! The hardest things that Jared is facing these days are just overall energy level, and the issue of eating! Jared has been trying really hard to eat as much as possible, but it is a huge challenge still! His favorites are still Jell-O and Pudding; one weird thing he loves is hot coco with protein powder in it! I have been sneaking protein powder in seriously everything he eats sometimes he can tell and sometimes he can’t! Jared's overall energy level is getting better and better, but if one day he walks a lot the next day will be pretty rough! 

Yesterday, we met with Jared's transplant team doctors yesterday and they told us he is right on track for his recovery! He is doing so well they dropped his IV fluids at home from 1500 mg to 1000 mg, and he has started to just naturally drink more and actually feel thirsty! The doctors have scheduled an "Exit Summary" appointment for the 14th of December; this means that if everything continues to go well we will meet with his team on the 14th to pretty much discharge his from the transplant team and back to his normal oncologist! This is wonderful news and we are thrilled that everything is moving so fast and well! Before the leaves the team, if all is well, they also will do a small surgery to take Jared's Hickman Line out of his chest as well as his port on the other side of his chest! This means that Jared will be able to shower normal and move better and just feel more normal again!! Jared is so thrilled to have this all moving so quickly and for it all to be behind him so he just feels like a healthy normal 23 year old! Continue to pray for no complications and continued strength and desire to eat! 

Jared ready to go to his appointment with his hot coco! 

Day 17 & 18 Post Transplant : Home From the Hospital!!

Yesterday was Jared's 17th day post-transplant and our 14th day of being in the hospital. Jared woke up and was not in any pain and was feeling pretty good. I was angry like every morning after sleeping in my "chair/bed" (at the start of our hospital visit I thought it was a cool invention, but by around day 7 I was not a fan!) The day before the doctors had mentioned that Jared could maybe go home sometime during the weekend and we were very excited! So, yesterday when the PA came in a told us that if Jared felt ready we could go home today we were SO SO excited! It took most of the day for them to discharge us, but around 5pm we were leaving the hospital! This was exciting, but no easy task.... Over the course of two weeks I somehow acquired lots and lots of stuff that we then had to lug all the way down to the car! The drive home felt unreal, it was so exciting to be out of the hospital! 

Jared is doing great still today! We had an appointment early this morning and his counts were still good! Today, Jared started IV fluids at home again to stay hydrated, this time its an even bigger bag and runs for 6 hours so he is not completely thrilled about it, but it helps him feel good and not have to drink as much! Jared is trying to eat still and drink protein juices and smoothies, but it is still a battle! Jared gets a break with no appointments tomorrow and one on Monday where we will meet with his normal transplant team and hear the plan from here on out! Jared is thrilled to be home and feeling better! 

Jared's last walk around the hall! 

The hall got Christmas decorations right as we left! 

Jared's Victory shot after he found out we got to leave!!

I was so excited to not have to sit or sleep on my chair/bed another night!!

Jared was so excited as we packed up! 

In the car ready to leave!!