Hello Again

I am so Sorry that I haven't posted in so long. Thing had been rather stressful here on our end for some time that we were to stressed to post but now that things are improving and everyone is returning from much needed vacation in while Jenn has us band from the hospital in order to take, I am finding much relief in being back with my sister.
For those who didn't know, my sisters heart had stopped functioning on its own leaving Jenn relying completely on machines again on July 9Th. We had no warning, we just went from joking around to her napping and then to O2 alarms sounding. It was actually very terrifying on our end for all of our family and close friends involved. We were very lucky that the pump they hooked her heart up to kicked in and kept her going. The scary thing is that other than being extremely exhausted, Jenn didn't even know what was happening. She was awake while being on the machines and even though we were glad to be able to talk to her, it was kind of disturbing. we all fought to the very last second about leaving on vacation but she threatened to have us kicked out of the room and floor for the next week if we didn't. (The vacation is a complete other story for a later date, but ugh was it a doosy.) We aren't really sure how things came about but we know that Jenn did receive a heart on July 20Th around 11:30 pm. The heart was from a 24 year old male and although everyone here is on high alert for rejection since Jenn already has the GVHD, so far everything has been going great.
I'm also happy to announce that she is able to eat small amounts of applesauce now and has 2 of 3 casts off. They are still worried about the left leg because there is still a lot of damage and no feeling in it but only time will tell. Jenn loved getting her leg back tonight though and when i walked in, Rob was painting Jenn's toe nails a very epic shade of green with purple polka dots. I'm not sure how Rob got away with the colors but it was cute non the less. I really cant think of what else to update on. I myself am a little behind so for now I will go and if I think of something I forgot I will add it later. Thank you all for your prayers. Jenn really is a miracle for our family and we appreciate everyone helping up pray. So until next time...Good night.

Crazy few days.

I am guessing it is safe to say that things might be picking up real fast here on our end. Just since the last post things have been crazy. Jenn's tests came back clean from the staph infection and they also came back clean to the point that it was now marrow time. Yesterday they reconstructed what was left of the left leg, which is going to lead to a very brutal rehab later once we get further along. At least she gets to keep it though. She currently has a soft cast on the left leg and they put the hard cast back on the right leg and for those wondering, it was another Tye dyed one. We are keeping her bright. lol. Today she was given more of Mike's marrow which took us back to Day 0 of our wonderful waiting game here in Boston. They were also trying to test her lungs to see if the steroids helped and she was able to comfortably breathe at least 10% on her own. It was almost 15% but she was really pushing herself and after awhile her O2 stats started dropping so they had to boost it back up. Each day they are going to aim for a bit more but they don't was to strain the body anymore than needed. They did take her off of the medications they were using to keep her heart on rhythm and so far the only changed were that her heart rate dropped after surgery yesterday and hasn't changed much since which is good. They said it is normal considering everything they had her on and the recent traumas to her body. She is awake here and there and already getting angry with me for eating Arby's without her. If looks could kill, I would be dead after this afternoon for sure.
I think otherwise the only other things to mention is that Mike is doing good and very proud of his marrow right now. He is a little sore but I think his Big Head will keep him going for awhile to distract him. Rob is also on his way up here tomorrow from DC so Mike is entering the protective little brother stage. Rob is one of the medics who has been kind enough to help us transport Jenn when we needed to get her between hospitals. He is also a college friend from the past and now current boy friend. We will see where this goes but otherwise we just have to take everything day by day.

The Update I have been Promising.

I am so sorry that it has taken me so long to finally sit and update. I have really been having a hard time staying focused on top of keeping my family itself updated.
I will just cut to the chase and tell you all that things are not good. In the last 2 weeks Jenn has been fighting a very severe Staph infection that left her relaying on machines to keep her alive. They put her into an induced coma to keep her stabilized until the infection was treated and gone however now every time they try and remove the drugs inducing the coma, her heart goes haywire and for a few days did nothing but try and crash every few hours. Her heart did manage to get through the last 24 hours off of the coma inducing drugs and they tested her lungs today. She was in respiratory arrest as of the 20th which is why she is back on the vent and they weren't too worried up until this week. She has had spouts in the past with "falling asleep" on her own and not waking up or breathing well for weeks and she would come around but today they tested her lungs and at this point her left lung is too damaged and her right lung is too weak to support life so they had to boost the vent back to 100%. They did tell us that she was trying to take baby breaths when they were testing but they were too short to actually gain anything. They added a steroid to her antibiotics to help with her lungs to see if anything improves over the next week and are otherwise still keeping a close eye on her heart. She has yet to respond in any way since they stopped inducing the coma but we were told that she is still epically critical so it might not happen any time soon. At first they were wanting to give Jenn the marrow needed to help support the healing of her bones this week but with the current conditions everything is pushed back until further notice. There needs to be a major improvement before they can move forward however they will remove this set of casts on her arm and legs as planned to make sure everything underneath is still where they would like it. They are keeping a close eye on her legs still as well. So far so good from what we here in that area though. Otherwise there still isn't a whole lot I am can think to tell anyone else. I very well may have forgotten a few things so I apologize now. I will try and keep up more but it has been a difficult time.
Thank you all for your prayers and support.

Really Quick

I know I have been promising and update but things have been so crazy that I havent had much time to do anything. Tonight I am going to catch up on my sleep and first thing in the morning I will give you the huge update. Thanks to those who have been sending the texts. For those we asked to hold, its only until things start picking up. Our family is under a great deal of stress right now but thanks for understanding. So until tomorrow...

Not So Good Day

This morning I was woken up to the sound of 2 phones going off at the same time and just about fell out of bed. I don't know if I could just tell that something was wrong or what but I already started feeling sick before I saw it was the hospital. Sue and I both received phone calls around 6 saying that Jenn's heart was crashing and they needed to get it back on track fast, so praying and panicking at the same time, Sue and I managed to get dressed and get phone calls made while driving. (No people, I was not driving while texting and calling you all so be epically proud of me.) I sat around most of the morning today waiting to hear anything at around 10 we found out that she had suffered a heart attack, hopefully in her sleep, but they cant be sure because she was in bad shape when the alarms started sounding at the nurses station. Her heart was off rhythm and because her heart has a tendency to try and pump backwards and build up pressure, the pacemaker wasn't able to correct it. I cant say that we are shock since this has happened before but not even two hours after finally getting it calmed down, her heart suffered another attack and so they had to go in and relieve the pressure. We haven't been allowed in her room all day and they are still unsure about tomorrows events but the staff here is really skeptical about what is going to happen in the next few months. Things may have to slow down a bit which means a long stay and I am not sure how that is going to go over considering we are already looking at being here until March. My sister and her kids did make the long drive back here today to help sit everything out with me but what it comes down to is needed a new heart. It was stressed again today, to the epic extents that her heart cant handle any of this; however we don't have many options in our case. We really need a lot of prayers here guys. The next two weeks are expected to be some of the worst and they cant say much better for the few after either. We are praying our hearts out here tonight and hoping for better news tomorrow. We will keep everyone update.

Finally A Great Day.

Considering everything that Jenn has been through in the last few months, no one really expected the last few weeks or even days to end like the did today. Today was just an Epically Awesome day all around. Nevermind that I slept through almost all of it because Jenn woke me up at 3am and kept me up ALL NIGHT! She was however a happy bundle/bed full of smiles and joy today. I am happy and surprised to report that her head hurts less today than before the surgery and other than just the general pain, her leg is really the only thing that is causing severe pain. She is off the vent and talking to us. She was cranky at first because she wanted water and they wouldnt give it to her but they have finally okayed ice chips and she is doing ok with those. When we left at 9 she had just fallen asleep which should be for a good few hours considering all the people she talked and laughed with today. She was tired when we started watching Finding Nemo but was very content. So I should also extend a very large and greatful Thank You to all who made her laugh and smile today. It is a Blessing and makes things easier on her.
I wish I had more to report tonight but I really did sleep most of the day. I was very poor company to my sister. lol. She understood though which is good since she is the one that caused it. lol. Well I will let you know more about whats happening tomorrow. Thank you for your prayers and support!

We Really Need Prayers

I think today had to have been another one of the longest days of my life. I actually think that it might even top yesterdays epically long day. The day started out really well. No one really knows what time Jenn started waking up but about 9:30-10ish she managed to ring for the nurse to come in which started a morning full of examinations and follow ups. They gave her a dry erase board to try and write to us on which works out really good but she is really tired still so doesn't get much on very fast. By 10:15 she had already insulted the surgeon doing his follow up by telling him to smile and that it would increase his face value. I am not sure where it came from but I had to laugh even though He didn't think it was so funny. Sue just about died watching her struggle to write it. They were very pleased with her progress this morning and the fact that they were able to lower the vent down to 45% with minimal problems. For the most part Jenn has been listening to the boys talk while they were visiting and was excited to see her dad this afternoon. She didn't want him to leave the room but we are only allowed in 30 minutes every 2 hours so she had to let go. Otherwise she is sleeping. She is pretty sore and tired and even though she never tells us, I think we wore her out today.
The reason I am asking for prayers is because today we were given some answers to some of the majors questions that have been lurking around about Jenn's status for the last few days, regarding receiving new marrow, how long we would be here and if she would get to keep her legs and what not. Regarding her legs, at the currently moment they did see some slight signs of improvement in the skin however they are still unsure of her left leg. They keep holding off but they have already reconstructed her leg in the past and really cant repair it much more and still have a functioning leg. The left leg has been broken and fractured an epic amount more that the right and therefore leaves less to work with. They are going to continue monitoring them daily and we will see in another week were we stand. Now for the kicker. They pulled Jenn's Dad, My Brother and I into a meeting today to discuss the possibility of giving Jenn more of my brothers marrow to try and not only kick this cancers butt but to help reconstruct her bones since the first BMT was unsuccessful as to where cancer cells took over again. My brother has agreed to do whatever he needs to help Jenn but this is at a stand still until they can determine if 1. the tumors inside her liver are active or dormant and they can get a new liver to prevent them from spreading again (they cannot remove them); and 2. Jenn will have to go through 3 complete rounds of the radiation and Chemotherapy that they were currently working on to kill off remaining cells that were not removed from surgery. They main concerns for everything not including the liver are whether her heart can with stand the abuse and if they can continue to keep the GVHD that developed with the first BMT under control to avoid to same complications she has had so far in the past. They have just recently gained control of it, we don't want it to cause any more problems. We have discussed it all with Jenn and she just got a very sad or worried look in her eyes and all she said was she will do what she has to but she is very tired. So I think what I am asking is just prayers for strength. I know many of you have been praying for it all along but tonight I think she needs it more than most days. This has to be so frustrating for her because it means that we are basically starting from scratch and we were told that we wouldn't be home until the beginning of March maybe April which is more heartbreaking considering everything she will miss back at home. So if you could please just send up an extra prayer for strength and comfort, I would really appreciate it. I know I have been praying most of the afternoon and evening as I watched her wear out.
I will try and post again tomorrow but things should be pretty quiet this weekend with family here and it being the weekend. They are basically just pushing her to rest. I hope everyone else gets out to do something fun. Feel free to let us know if anything else happens around us that is exciting. You can leave the messages here on email us. Sorry this is so late and Thanks again for all your prayers and support.