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!! 

Day 16 Post Transplant!

Today was another good day! Jared continues to slowly be making progress everyday. This morning when Jared's doctors came and spoke with us, they explained that Jared had only pressed his pain pump twice in the last day!! This means that Jared is now completely off the pain medication that he can give him self through IV every six minutes. The doctors also decided that since he is doing so good and his mucisitious his healing so well they introduced him back onto many of his medications in pill form rather then IV. The doctors also decided that because Jared is trying so hard to eat little bits that tonight they stopped his IV Nutrition!!! These are three HUGE things that all happened today and it means Jared is just one step closer to getting out of the hospital! 

Tonight the nurse came in and unhooked Jared from his IV nutrition and then realized he had nothing else he needed to be attached to while he sleeps because everything else is in pill form so tonight he gets to sleep for the first time in 2 weeks with no big tubes hooked up to him! He is very excited! In the morning he will be hooked back up for fluids, but no more real medicine! 

Jared looking over the menu trying to decide what to eat ! Not his favorite part of the day. 

 Today Jared was able to eat a little bit more then yesterday, but it is still a huge challenge! Food tastes icky and feels weird in his mouth and tummy so it is not an enjoyable experience. He did try to eat several new things today, but his favorites are Jell-O and hot coco a weird mix but that’s what tastes the best to him right now. Now that he is off the IV nutrition we need to be careful about making sure he gets lots of protein in the next several weeks. Jared is being a good sport when I make him take "one more bite" of everything he says tastes icky. 

Jared tried some pancakes this morning! 

Jared is continuing to heal from his mucisitious and is in far less pain, but is still waiting on a few areas to heal up. Jared counts are almost pretty much normal and out of the scary danger zone. Jared is really really hoping to get out of the hospital in the next few days just for a change and to rest at home. The doctors just check in day by day so hopefully he will be released soon! Continue to pray for energy, strength to eat, and that he will just continue to feel better and better each day! 

Airborne is now my drink of choice because I am so scared of getting sick! 

Day 15 Post Transplant

 No real new news today on Jared's progress. Jared is continuing to try eating many different things. This morning he was able to eat an entire cup of Jell-O, and later he tried some milkshake and some pasta. The doctors told us today that the next 24 hours will hopefully be his last bag of IV nutrition; so hopefully in the next couple days his appetite will come back a little bit. It is a little scary to think of him going off the IV nutrition, because he might continue loose more weight due to not being hungry and nothing tasting good. Pray that he is able to eat healthy amounts starting pretty soon! 

Jared has barley had to use his pain medication button in the last day, so they might be changing that to pill form in the next couple days. Jared has started swallowing a couple pills already, so he is moving in the right direction. 

Today Jared's personality and attitude seemed really positive and back to normal, but his body has been extremely exhausted. I kept trying to try to take him on walks around the hall and he just was not feeling up to it. He did 2 laps, but pray that a little more energy can be restored. Jared is doing really well and is hoping to get out of the hospital in the next few days. He is very ready to go home and just relax! 

Update post Transplant day 14

Today was another good day. Jared's mouth has continued to be getting better, so now we are just waiting on the rest of his GI tract to catch up. Jared continues to not have a fever and they have stopped two of his very strong anti-biotics because he is doing so much better! Jared still has his pain pump, but has been using it far less then before. 

Even though Jared has absolutely no appetite, and nothing tastes good, he is encouraged to eat about 5 small meals a day of anything that sounds good at all. Jared is not quite to the 5 small meals, but today he was able to have a couple bites of tomato soup and grilled cheese, as well as a couple bites of clam chowder. These small steps are so exciting! This feeling of not wanting to eat anything and everything tasting weird is very common and could last for several months so Jared has to try to get used to eat not for hunger or taste but like its medicine he needs. This is very hard for Jared and really anyone to have to change your view on food so much. Jared is doing very well at trying his best! 

 Jared eating a few bites of dinner!!!

Another very exciting thing that happened today was Jared was able to take two pills by mouth. Jared has been unable to swallow any pills for the last couple days and today was his first attempt! He was able to swallow them both with some pain. It was very exciting! Jared has to be able to take all of his tons of medication by mouth before he can go home so this is an exciting step in the right direction. 

 Jared ready to take his pills! Then YAY he did it!  

Overall, Jared is doing well, he is able to walk without loosing his breath as well as trying to eat and take his pills. Jared's counts have been going up and up each day!! Pray that everything just continues to get better and easier! 

Update Post Transplant Day 13!

Yesterday was Jared's 13th day post transplant and it went really well! Jared's counts have continued to go up tons! They are starting to get close to the low end of normal, hopefully in the next couple days they will continue to get better! 

Jared made huge progress yesterday and was able to have 5 bites of chocolate pudding as well as drink some 7up! This was so exciting and a huge step to be able to get better enough to leave the hospital. It is common for people to not think food sounds or tastes good for a long time after transplant, so it is challenging for Jared to even want to try to eat, but he is doing good and trying. Jared also was able to do 7 laps of walking which is the most walking he has done in weeks! 

The doctors are very pleased with Jared's progress and hope to slowly take him off the IV nutrition and pain medicine over the next few days. Jared's throat is still very painful, but is still continuing to get better every day! Not a lot has changed, but Jared's personality is continuing to come back along with his sense of humor so that is fun and exciting! Continue to pray that he can keep eating and continue to feel better! 

Update Day 12 Post Transplant

Today is another happy day! Jared's Counts have doubled again and his mouth is feeling a little bit better! He can still not drink or eat, but they hope that hey will be able to start drinking in the next 2 days and the eat a couple days following! Jared's GI track is still needing some healing, but slowly it is feeling a little bit better! Pray that Jared's mouth and throat continue to get better and in the process don’t make him to nauseous, with all the scabs and skin being swallowed. Jared is now starting to get really excited to be able to eat and drink and has already been picking out the meals he would like me to make him once we leave the hospital! 


Jared has been extremely exhausted all day, and requires lots of sleep to rest up his body, but his overall energy to talk is coming back. Jared was able to go on a short walk today and take a shower, these activities wiped him out but it was good progress. Today they did some more tests, and we do not get the results back till sometime tomorrow so in the time being we get to dress up in my favorite outfit of a gown and gloves. 

 My Mom and dressed up to spend time with Jared. 

Not a lot of new information today, he is doing very very similar to yesterday. Pray that his counts continue to rise and healing continues to happen throughout his entire body! 

Day 11 Post Transplant Update!

Today is a short but sweet update on Jared's progress! Jared woke up this morning feeling a little bit better then yesterday! I knew this because as I was waking up his nurse was in the room and Jared cracked a joke about how bad my hair looked.... I knew then that he was feeling better. While he has been sick his sassy remarks and funny jokes have not existed.

In the middle of the night last night Jared's fever finally broke!!! He has had a normal temperature all day and if felling a little more comfortable. The Doctors also told us that today Jared's Stem Cells Transplant has engrafted! Engrafting is when the stem cells that you got back in transplant are finally doing the right thing and his counts are coming up! His Body has finally accepted his cells as part of his system. This obviously is very important to have a successful transplant, and very exciting!!! Jared was very thrilled with this news, it is always good to hear that all the horrible things you are doing are paying off and you can see that you will be healthy soon! He is still pretty far from the normal levels, but they go up tons each day! 

Jared's mucisitious is still really painful, but it is getting better! A few days ago when I got to look in Jared's mouth with the light, I seriously felt like crying it looked so painful and claustrophobic! Today I looked again and it is looking so much better! You can see his tongue and the soars are not as big. Because his mouth all the way through his GI track is pretty much destroyed from mucisitious, now that its is trying to heal all the scabs and gunk are falling off making Jared very uncomfortable. He has had some moments of panic because he feels like he is choking on all the icky stuff. The doctors say that it will get better every single day! 

Through this whole process Jared has had several allergic reactions and things, but today a weird little rash broke out all over his body. It is not painful or itchy, but they don’t know what it is from so pray that it can just clear its self up! Most things that Jared is experiencing are painful and annoying but so much better then a few days ago! We are thrilled at his progress and that the transplant is working! We feel so blessed to have so much support during this process! Thank you everyone for reading my blog and praying for Jared every single day! Thank you to the people who have sent emails, called me, and brought me treats! We are so grateful for the support and prayers! This is the scariest thing that I hope I ever have to do, but everyone’s love and support has really helped me to be strong and be able to help Jared through this Journey! Continue to pray for a fast and full recovery for Jared! He is Amazing and I am so grateful for him! 

 The Floor we are on put up some christmas decorations today! Very Exciting! 

Update Post Transplant Day 10!

Thank you for all your prayers yesterday, Jared was able to sleep most of the night last night! I was very worried when bedtime rolled around because I was so desperate for a good night sleep after a few no sleep nights. When the nurse came in and did his 11pm vital signs they were the best they had been in a few days, his blood pressure was not scary low, his temperature was not as scary high, and his oxygen level was perfect! The nurse and I were so excited that we literally did a happy dance for 10 seconds. Jared was really exhausted and was able to sleep through the night besides every other hour bathroom breaks (They pump fluid through him all night to try to keep his temp down, but makes it hard to sleep peacefully!) I was very happy to sleep! 

The last several days have been so hard, like so hard you just want to sit and cry, because you feel like it will never be over. Last night I lay in bed praying and praying that somehow I would gain strength or that Jared would just get a little better, so I could see the light at the end of this tunnel. So at 9 am I woke up and hear people talking, very confused I rolled over to find Jared and the nurse chatting, this was exciting because the last several days he has barley spoke due to the mucisitious and pain in his mouth.  The nurse informed us that all of Jared's counts had doubled again! All day Jared has been in a lot of pain still from the mucisitious, and also pretty nauseous, but he has just felt a tiny bit better today and was able to talk to me a little more and  was not as sedated as he has been the last several days. Jared was able to go on a small walk up and down the hall way as well as take a shower! These small things brought me so much Joy, and I know that everyday slowly he is going to feel a little bit better.

Over the last two days Jared has had some really good friends be able to visit, yesterday his friend Jared and his family stopped by, and today Cody and Jessica were able to come by for awhile. Seeing friends from NNU really makes us extremely excited to go back to Nampa in January! We cannot wait to go back to school and finish up and just feel normal again! 

 Jared is still in pretty extreme pain, but just the small extra amount of energy Jared had was very exciting! I asked Jared if he wanted me to say anything specific tonight and he said: "Ask people to keep praying that I can make it through this last part fast, and that my counts will continue to go up and my mucisitious will disappear FOREVER!" 

Jared still had some facial hair today, but it was falling out and bugging Jared. He can shave right now because of infection and stuff, so I pulled it out! It was completely painless for Jared, it just came right out. 

Post Transplant Update Day 9!! Happy Thanksgiving!

Last night was another awful night for poor Jared. He was up most the night between barfing and his hallucinations. He does say some pretty funny things, but it is also very scary to watch someone be so out of it for so long, and so uncomfy from such a high fever. 

 Jared with his little Barf Bucket. 

This morning Jared's doctor came and talked to us and his counts have started to come up!!! They are still super duper low, but no longer at zero!! Jared is very happy and excited about this because it means he should not get any worse only better! Today they have been able to keep his fever a little lower then it was the day before, but it is still much higher then they would like. This morning Jared was given a couple more blood transfusions, these will hopefully help the recovery process, but because in the past he has had so many allergic reactions they give him pre medications of a lot of benadryl so he has slept most the day. He continues to get super nauseous whenever he has to get up to go to the bathroom, and has continued to be throwing up quite a bit. Overall it was a pretty simple day, with no good or bad exciting points. 

Today Jared's throat has been hurting a bit more, but in a sort of different way. They suspect that the mucisitious is starting to slowly try to heal and so it causes some more discomfort. I feel like my blog is always me just saying all the super sad things that are happening to Jared, hopefully I will soon be able to write more happy and exciting news as he starts toward his journey to feeling better. The doctors still say he could be in the hospital for another week or longer, it is just unknown. Pray that tonight Jared can have a goodnight sleep, with less pain, nausea, and no fever! 

Today and everyday I have so thankful for Jared. He is so brave and strong, I am so lucky to have him!

Post Transplant day 8!

I am still a day behind in my blogging so I am trying to catch up today! So here is an Update on Jared from yesterday Wednesday November 21st, he is eighth day post transplant! 

Every single day I tell Jared "Don’t worry today has got to be the worst day" well I wish that I was right, but yesterday much like the day before was pretty awful. Tuesday night was as far as I covered last blog post, that night was pretty hard for Jared, we were up pretty much all night long. Jared had a few major things happening extreme nausea and vomiting, He was also  was hallucinating really badly, as well as  his temperature was almost 104 degrees. Jared becomes extremely nauseated almost every time he gets out of bed to go to the bathroom,  he gets dizzy and then needs to vomit. This continued all through yesterday. His Temperature has been very high still for the last several days and nights, it makes it almost impossible for Jared to sleep because he is so uncomfortable. Tuesday night was also when his hallucinations began, it all started with him hearing loud Jamaican music that was keeping him awake from another hospital room. Because he is on so many medications he is so sedated that he cant really separate the real world from his dreams, so all through the night he says weird things really loud and asks me weird questions like last night he turned to me and said "I am not sure If our deal about breeding our race horses is a good idea?" Yesterday He also told me he put three little pigs in my chair so I need to be carful when I sit down so I don’t squish them!  In the middle of the night a very serious doctor came to check on him and Jared seemed very upset, the doctor asked what was wrong he continued to tell that Doctor that I needed wine! That I have asked everyone and no one will bring me any! I was so embarrassed!!! I told the doctor I don’t drink wine and he just looked at me funny, like I was the one being crazy! It is very scary to watch Jared be so not himself, but the doctors say it’s almost better for him to just sleep through this really rough part.

The Nurses and Doctors have been wonderful and answer all my weird impossible questions on a daily basis. I tend to love to ask questions like when is Jared going to be better? that is an impossible question because every person is different, and they cant say something that could not be true. Whenever something weird happens, or Jared's Temp goes up, or he says something funny I am constantly asking "is this normal???" I don’t think they have a "normal", but they always comfort me and say we have seen think lots before or something like that. So my point is all the symptoms that I described Jared having above are pretty "Normal" for people on so many medications and that are so sick. They say that these last two days really should be the worst days and Jared should be going up from here! 

Keep praying for Jared's strength and patients as he hopefully will start to feel better over the next several days! 

 Jared fighting off his fever! 

 Jared hooked up to all of his medicine. 

Post Transplant Day 7!

I wrote this post last night on Tuesday November 21^st…but forgot to post it!

Today has been one of the hardest days so far for Jared. He started off the day pretty good, he woke up and was very alert and happy and feeling "ok". Around 9 am Jared woke me up freaking out and talking really fast and not really making sense. He kept saying "I'm so sorry I am panicking!" he started breathing fast and this continued for about 10 minutes. The doctors came and checked him out and said he had a pretty bad panic attack that could be triggered from the pain medication he is on, because he is having so much or just the pure stress of everything going on. 


Jared's Temperature continued to get worse and higher all day today. Around 11am the doctors started him on a new anti-biotoc and again Jared had a pretty bad reaction. This one was pretty scary! The reaction he got is called “Red Man Syndrome" His head, face and neck turned bright flaming red and was painful and extremely itchy. They gave him some medicine fast and it slowly went away, but was very uncomfortable for poor Jared.  Right now Jared is trying to sleep but cant because of his 103.5 temperatures. This is pretty high for anyone but especially for someone with no immune system and is facing all these other issues as well.

Since Jared's reaction to the blood transfusion yesterday morning Jared has been very very itchy. Because his counts are at zero when he itches his skin it breaks the blood vessels and makes huge marks all over his body. He got a lotion last night that helps the itching so we apply that every other hour about. Another common thing for post transplant patients is for their skin to brake down in some places, so his armpits, behind his knees, and groin are just raw. 

Jared's throat and mucisitious issues are also still really really bad (I made the mistake of looking in his mouth with a flashlight.... out of all the really icky things I have done this last month that I never thought I would be able to do this was by far the worst. I seriously cannot imagine how much pain he much be in and how claustrophobic and just horrible his mouth pain must be. Everything all the way to his tummy and through his intestines has big soars and is extremely swollen and shedding skin...Sorry if that is to graphic but its the truth.) I feel terrible sitting by Jared's side, as he is so miserable and in so much pain even after morphine. He is so brave and so strong because if I was in his shoes I don’t know if I could handle it. 

Tonight has been the worst for Jared and also for me. You feel completely helpless as a caregiver when he is in so much pain and so uncomfortable. Over this entire Journey of two years ago finding out Jared had cancer all the way to today people have been extremely kind and encouraging. One thing that haunts Jared and I is that people always tell us how cool of a story we will have and how we are going to impact others through it. This is something several people have told us in different ways and words and it haunts us not because we are angry that this is happening and that this is our story but because we hope that when this is all behind us that we live up to these peoples words. Everyday I wonder why us? How was Jared a healthy 21 year old diagnosed with CANCER! Cancer is such a scary word, and now we are living it. I don’t ask these questions or say these things because I am mad at God or I feel its unfair, it just really is to me at least, a crazy story. I don’t know why this is our story? But Jared and I pray that we will be able to use this horrible experience for good in some way. We talk about the lessons we could be learning like.... Because this happened to us when we are so young we know that we are going to not take our life together for granted, and live it to the fullest starting now. We just pray on horrible nights like tonight that some how this story will help someone or help us in someway. We know God has a plan and we are not in control so we are just holding on tight for now! 

My Grandma Dianne has always put this verse in my birthday cards, graduation cards, and on other things. I have always liked the verse, mainly because it is encouraging and I have had it memorized since I was little. I think that this is a verse that has been popping up my whole life because in this time that is the scariest and the hardest that I pray I will have to experience for a long time, this verse brings me comfort and is one that I say to Jared when he feels his weakest. 

Jeremiah 29:11-13
   For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.
   Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with your
 whole heart. I will be found by you, and will bring you back from captivity.

Thank you for your prayers! Please continue to pray for Jared hopefully these are the worst days and he will be improving soon! 

 Putting Jared's Anti Itch lotion on. 

Post Transplant Day 6!

Today, Jared woke up feeling a little better then he has in a few days, after two full days of the IV nutrition his body is not as weak as it was before.  His mouth is in more pain every single day, and as it continues to get worse they up his pain medication so he can manage it on his own. This morning Jared decided it was time to just get rid of as much of his hair as possible, because he lays in bed all day and its all over his sheets and pillow. Jared's nurse cut his hair as short as she could without shaving it (They cant shave his head because the risk of cutting his head and getting an infection). He looks good and is now more comfy. After his hair cut he even had enough energy to take a quick shower, which surprised the nurses! After his shower, he had to get a red blood cell transfusion, which is very common among transplant patients. Jared has never been given red blood cells before, but he has gotten platelet’s twice before and each time has had a strong reaction and he breaks out in hives. The doctor explained almost no one has a reaction with red blood cells, but they would give him some pre meds just incase. About half way through the transfusion he broke out in pretty bad hives all over his body (much worse then when he had a reaction to platelets). Apparently Jared is pretty sensitive to the chemicals in the preserved platelets, and when he is given blood, if the donor was exposed to anything Jared is allergic to, then it is possible for Jared to have a reaction!

 Jared before his haircut! 

                                                        Jared's Blood Transfusion

All the fun stuff being pumped into Jared..... 

All of the tests that Jared has had so far have come back negative of infection! Jared's temperature is still very high, but they are watching him carefully. They take new blood samples every time his temperature spikes so pray that the results continue to be free of infection! Jared still is pretty itchy tonight but he just got a prescription for some cream that seems to be helping! 

Jared was able to do one short walk this evening down the hall and back! 

It is day 6-post transplant and Jared is still high in spirits! He hopes to be out of the hospital a week from today! That is his goal! Even though it might very well take longer. Thank you for your prayers and support!