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.

Short Update

This will be the short update because I am exhausted from all the pacing that I did today. Jenn got off to a rocky start to surgery but otherwise things were managed to work out fine. Her blood was still a bit thinner than they had hoped but they didn't know until they had already opened her up. She was in surgery for almost 7 hours and then recovery for 2 but they were successful in removing all that was visible to them. They are very confident but still say that they would recommend at least 3 radiation session after which doesn't matter because she is already set up for them for her back and hips. The medications they had her on to keep her sedated have been lifted because they want her to wake up on her own. As of 10 minutes ago when I left her room, she hadn't opened her eyes but they said it could be anywhere from 12-32 hours before she would because of all the meds having the wear out of her system and how worn out her body is. She is back in the ICU until they get permanent room set up for her.
Tomorrow is going to be a semi busy day here since Grandpa, Meg, Jenn's dad and Mike are coming. Dr. H is going to be talking to Mike about the marrow again and we will also get our finally decision on Jenn keeping her leg. We are keeping out fingers crossed but when if comes down to it, we were warned in the very beginning she might loose it and it would only be a matter of time before it HAD to go. We will know more tomorrow about the game plan from here and I will update you when I get the chance.
Thank you for all your continuous prayers and support.

Big Day Tomorrow

Today was a pretty quiet day. There weren't really any changed in Jenn's condition which is a very good thing in our eyes. They are very pleased with her stats and she continues to do very well on her antibiotics. I met with Jenn's Med Team this afternoon and her surgery to remove the tumors in her head was moved up to tomorrow based on the fact not so much that the surgeon had time but rather on the fact that he wants to be here for the first 24 hours after and wont be in town this weekend. I couldn't help but laugh again today when the staff referred to my sister as Smiles and was talking about having her up and horsing around again soon. Her surgery will take place around 8am and is expected to be anywhere between 4-5 hours. I'm surprised and happy to say that other than two small holes, the third (main incision) will only be 3 inches wide. I was kind of nervous about how extensive it would be. I am still a little nervous about Jenn's surgery but I trust that she is in good hands and started worrying more about Her dad who is flying 13 hours over oceans tonight. I had completely forgot that His R&R started and that he was coming. I am praying for his safe flight. Especially after that other plan just vanished. All in All, He should arrive in Erie around 6am and will be here Friday morning with Jack, Grandpa and Megan. My parents cant make it because Katie has strep throat so if you could say an extra prayer for her, we would appreciate it. She is pretty depressed about not getting to come. Otherwise I think that is all to report. I will try and update tomorrow if I get the chance otherwise I will update as soon as I can Friday. Now its sleep time! Good Night.

A Very Good Day On a Bit of a Personal Note

First I would like to say that we have finally managed to get good news. Not only did I manage to finally get a night's sleep but when I went in to see my sister for the hour that I was able to this morning, I walked in to see a room full of monitors and machines like always only something was very different. For the first time in months, my baby sister's stats were at a close enough to normal range to be back on the charts. They even managed to get her heart to beat on a steady rhythm all day! Her counts were all still at 0 and they did have to give her some blood today but we were told her body is responding well to the antibiotics so everything should be set for Friday's Surgery.
The only other health thing to report is kind of funny although it wasn't suppose to happen. They have been giving Jenn meds to relax her muscles so she doesn't breath on her own, to allow her lungs to rest and either the round of meds were wearing off or the dosage was too low but all the sudden Jenn had an alarm going off because she was trying to breath on her own but against the vent. I know it sounds serious however it is just her showing how stubborn she is and I laughed (I really cried) because it was the first time in a LONG time, an alarm was showing something good in my eyes and not bad. They did fix the problem but they are going to examine her in the morning and possible turn the vent down a bit and allow her to start assisting with the breathing. They are wanting to really watch with the condition of her lungs right now but even they don't want to fight it, if she is starting to pick up on her own.
As for the personal note, today was very uplifting for me because finally having to time to sit down with a bible and study and pray (with the many of you that are praying with and for us), I know that I owe today to God. I cried when she started fighting to breath because I knew for a fact that God grace gave her the will and strength to fight when she is barely the girl we new in September when this all started. Something that hit epically hard today was a text that I received from "The Puppet Man" a few days ago which basically said that when Jenn is sleeping, It is her time with God and last night I laid up thinking because I realized it is true. Back when this all started, one of the first times my sister woke up and couldn't talk, she started writing to my on a glove. At first I didn't know what it meant but as she got stronger and started singing again I realized they were the lyrics to a song that she always sings. The lyrics on the Glove were "...my heart aches, my body longs, I cry to you, restore my song again. How can I find you Lord, Your all that I adore..." Now first I should mention that I was really confused because it isn't like the chorus part of the song but half a verse and part of the chorus, which had us stumped until we realized she was singing in her head. Not so much to use, but using her prayers and songs to calm herself down and fight.
The reason I am bring this up is because today i received a package and a letter from my grandpa that said, "You will need these" and inside was a handful of butterflies and all her Casting Crowns Cd's that she used to drive me nuts with in the past and that's when the picture of Namesake(Jen) and Jenn popped into my mind from 2 years ago sitting in Jenn's room listening to Casting Crowns or as Katie calls it; Jenn's theme song, which is the I'll Praise You in the Storm. It's strange but I see now that I have a sister who is so wise in her years and pray that she will be able to recover and answer so many questions that I have. I also get now that she uses her music to express herself so in the future I am going to have to pay closer attention to what she is listening to and not mind it so much. I still may not understand why God is allowing her to have such a hard time of things but I am sure there is a reason and I am finally admitting that I am leaving her to him and letting go. It really isn't my fight nor is there anything I can do but pray and support her.
So I guess I am finished rambling now and should go do the dishes for Sue. I am very thankful to have a place to stay and I enjoy spending time with Sue and her 16 year old daughter Ashley. Ashley seems pretty close to my sister and I found out last night, helped aid in some of the past crazy adventures before my arrival here in Boston. It is nice to see what my sister did in her spare time. I always wondered. lol. Ok now back to those dishes.

Another surgery with 4 more lined up?

So we aren't sure what to think right now so we are just holding out breath here. Jenn is quietly tucked away in the ICU after another surgery again today with another lined up on Friday. They finally managed to get her fever down to 101 before her lung collapsed and when they were forced to open her up to remove some tumors compressing the majors organs before her heart and lungs ran out of space to move completely (that is what was happening, they were being compressed). 24 lbs lighter/ almost 12 hours and 4 different surgeons later, they had most of her chest cavity and abdomen cleaned out and part of her legs as well. They are still waiting to decide on the legs but they think at this point the right leg might have some hope and they aren't holding to much hope for the left because of the number of fractures it has suffered in the last few months. There really isn't a whole lot to hold it together anymore. They even managed to clean out almost everything around her heart which took a miracle in itself because so far they haven't been able to keep her stable long enough. The only thing they are very cautious about now is infection because she already has 2 going on and now they are dealing with surgical sites. Because of the lungs and extent of the surgery they have given her meds to prevent her from breathing at all on her own until next week. They don't want to start sooner because they will be removing the tumors from her brain on Friday if everything goes ok until then and want her lungs and heart to have a chance to rest and not strain further.
I think the only other thing that I forgot to mention was that other than the surgery on Friday she will need one to work on her back and then 2-3 more for the legs. We were told she definitely wont be walking for a long time but we all expected that. Then ones the surgery on the back, chest and head heal a bit we will work on getting back on the radiation course and working more with Mike's marrow.
We know that whatever happens is in God's hands and although I may have a problem with wanting to let her go completely to Him, I know He is taking good care of her.
We are just taking it one day at a time, giving up one struggle at a time.
Now I am finally off to bed after a very long 2 days. Good Night and thank You for all your prayers and Support.