Emerald Hope

Final Plans

noreply@blogger.com (Jen) — Mon, 05 Apr 2010 20:08:00 +0000

Funeral will be Thursday April 8, 2010
Location: Mary Mother of the Redeemer Catholic Church
1325 Upper State Road
North Wales, Pa 19454
215.362.7400

9-10:45 Receiving
11:00 Funeral Mass

Obituary will be in tomorrows (tuesdays) Inquirer

In Lieu of flowers
Contributions in Jens name should be made to the Fred Hutchinson Cancer Research Center
206-667-4902

May 22 1971 - April 3 2010

noreply@blogger.com (Jen) — Sun, 04 Apr 2010 03:09:00 +0000

Our beloved Jen left us today. There's a big hole in our hearts and it hurts like hell. She faced this illness with courage and grace. She is our hero. Everywhere we look, in every song we hear, in every thought we have, Jen is there. She affected all of us so deeply, her impact was so profound, her influence was so immense, that there is no escaping Jen at every turn, which is raw pain right now, but we have hope that someday Jen's inescapable presence in our lives will be seen by us as what it really is: Jen's spirit, Jen's legacy, Jen's love for us. We love you Jen.

Funeral info will be posted soon.

March 30 2010......Hope Floats

noreply@blogger.com (Jen) — Tue, 30 Mar 2010 18:01:00 +0000

It's been really hard to find the time, energy and courage to post. Thank you to all of you who are still asking, hoping and praying for Jen.

She is having a hell of a time...to say the least. I can't begin to catch you up on all that has been going on. Jen was on the ventilator and showed signs of healing. They extubated her a week or so after she was put on...that only lasted a day. She was struggling and they intubated her the next day. The drs were confident that Jen needed a few more days to heal. We also needed to find a happy medium between Jens sedation and her level of consciousness. She was having high anxiety and that hindered the success of her doing the work of breathing on her own. Turns out now her lungs were not as healed as much as we thought they were and that other major problems were coming our way. At the two week mark they had to do a tracheotomy because prolonged ventilation (tubes down her throat) leads to infection. The trach was not so bad. They seemed to have her in a comfortable place and Jen was beginning to show signs of consciousness. She could shake her head and even at times smile. Squeeze your hand etc. Those events were short lived and within a couple of days our worlds took an even more dramatic turn. Bad news on top of bad news on top of bad news. Days of one problem after the other was all we had. All I can do is sum up what has been happening. Jen has three major problems...none of these problems are treated the same way and in fact treatment for each problem only aggravates the other...so much so that the drs have expressed how concerned they are and that they are doing everything they can. Basically, they are exhausting every option trying to find a balance in the treatment.

Jen has severe cmv(a virus) gvhd (graft vs host disease) and her lung issues. She is heavily sedated and is on the ventilator at an elevated setting. It's all a waiting game and unfortunately it takes days to hear results.

We are asking you to keep the prayers coming. It helps us to stay hopeful. We do still have hope. Jen is our miracle girl...all we ask each day is to receive good news to keep us going. We will take anything. And FINALLY today we did (really good news)......so we continue to hope, pray and be grateful.

Love you all.

noreply@blogger.com (Jen) — Wed, 10 Mar 2010 23:53:00 +0000

Wednesday 3/10
I can get used to this. Sitting in a chair besides Jen and Doctor after Doctor entering her room and telling us that Jen's lungs are improving as she's doing more breathing on her own. Today they moved her from 60% to 50% and she was down to 40% when I left. The beginning of the weaning off the ventilator has begun. At this writing, there is a chance that she might be off the ventilator by the end of the week if she continues to make the progress she has in the last couple of days. We are very encouraged and will definitely keep you up-to-date.

Talk to you soon. Think good thoughts.
jo/mom/gran

noreply@blogger.com (Jen) — Tue, 09 Mar 2010 13:02:00 +0000

Sunday 3/7
I won't even try to be as eloquent as Meggie in expressing how this experience has changed our lives. But only I can express how proud I am of my daughters and what wonderful women they have become and how much I love all three of them and, in Jen's and Meg's case, their wonderful families.

Today was an unbelievable day. It was pretty obvious to us that the doctors/nurses were at odds on how to care for Jen's sedation problems. It just didn't seem like they could keep her in a comfortable place. No matter how much they played with the dosage she was receiving, she remained agitated and hard to comfort. They moved the vent back up to 100% to take the load off her and try to ease her restlessness. She was still very agitated.

So, in their infinite wisdom, they assumed we were playing a part in her condition and decided to ban us and all visitors from her room indefinitely. Of course, you know we will do anything to help Jen get better so, like little lambs, we heard them out, and hovered in the "family room" waiting for our next orders. In the meantime, the doctors still had to figure out what to do about her sedation. So, they finally called in an anesthesiology consult who recommended a new drug for her that they use in surgery. Once it was administered, she settled down into a peaceful rest, and at the end of the day, we were allowed to re-enter her room.

The remainder of the day went very well. Jen remained calm and immediately her stats improved so by night, she was back down to 60% on the vent (where she had started that morning). These ups and downs take their toll on all of us, most especially Dave who has been staying at the hospital 24/7 and wanted to try to get home to see his kids, etc. but was afraid to leave her side. If you remember back in Seattle we started switching off nights staying with Jen and we will begin that plan now. Dave went home and I stayed and we will alternate as before for as long as needed.

Monday 3/9:
Jen had a good night - in comparison to yeterday, JEN HAD A GREAT NIGHT! And, what a good day for me to be there as every consult who walked into the room seemed to have good news - her lungs are improving. They moved the vent down to 50%. Her blood work and blood gases look good. We believe the next step is weaning her off the ventilator all together. They have also started to cut down on some of the sedatives she's getting (not the new one so far) but the others. She started moving around more but they say now this is a good sign as they want her to get used to moving about and breathing more on her own. She wasn't combative in her motions, just mostly leg movement and now they believe some physical therapy can be started to get her joints active again after lying so long in the bed. Every day brings news - some good - some bad- but today was filled with only good and we'll take it and cherish it and look ahead to more of the same tomorrow.

We thank you every day and you are all in our prayers as we are in yours.

jo/mom/granny

March 6th

noreply@blogger.com (Jen) — Sun, 07 Mar 2010 02:21:00 +0000

When I left the hospital last night at 7pm jens ventilator was set at 80%. When I woke this morning she was at 60%. WONDERFUL news!! We are just waiting and trying our best to sit tight and be patient. It's crucial for Jen to be heavily sedated and that girl needs A LOT of sedation! It's the best way for her to heal. It's hard to watch her when she's not getting enough of the sedation. Hard is an understatement. It's frustrating and painful. She gets very stressed and her heart races..it's a very helpless feeling. But, when she bounces back and settles down - we settle down with her. I don't have very much to say tonight. I hope and pray tomorrow her vent will be set to 50%. I hope I hope I hope.

I know this blog is suppose to be about Jen and her progress...but I just have to express the huge life lessons we are learning. The pain and heartache we feel is horrible but we are learning more than ever how precious life is. How not to wait to express what is in our hearts. How special family and friends are. We are learning so much about gratitude and about what matters..And once again Jen is at the heart of it. She continues to bring us all together.

March 5th

noreply@blogger.com (Jen) — Sat, 06 Mar 2010 01:46:00 +0000

Every morning before heading to the hospital we check in with Dave to see what kind of night Jen had. Unfortunately, he did not have good news to report. Jen struggled throughout the night and things only got worse when the nurses came in to give her her bath. She gets very agitated when she is "messed" with. Her oxygen levels dropped, her blood pressure and heart rate soared. The progress Jen has made the last couple of days has been really encouraging. This really set her back. It took a very long time to calm her down. Poor Dave. Watching Jen struggle for 5 min is horrible - to see it go on for any longer than that had to be absolute torture. She was on 100% oxygen for most of the day. It took a lot out of her...not a good day. She did start to improve as the day went on. They are seeing now just how much sedation Jen needs to get adequate rest. They do not believe her lungs are any worse than they were. The lung biopsy did not happen and who knows if it ever will.

Jen will get good rest tonight and tomorrow will be better.

March 4th

noreply@blogger.com (Jen) — Fri, 05 Mar 2010 03:38:00 +0000

Jen is moving at a slow and steady pace. Each day she is showing signs of improvement. Her ventilator is set at 60%. 10% lower than yesterday. We are shooting for 50% tomorrow. We now believe that her lungs are extremely inflamed. The steroids are working. It doesn't look like they will be doing the lung biopsy tomorrow. There is a small window of opportunity and as the pulmonary guy put it you are either too sick or not sick enough. Jen has been on steroids for a couple days now and because she is improving there is a chance that they may be biopsying a healthy piece of her lung and therefore won't be able to come to a definitive conclusion. The lung biopsy is a very invasive procedure. There are risks of infections and it will be very hard on Jen given all that she has been through. The decision will be made at the last minute. As we have all seen this week.. minds are always changing and the changes happen quickly.

Her sedation level will change too in the days to come. It is high now because it's important that she rest and is comfortable. BUT...she has had moments where she will blink, move her arms, and things like that. She gets pissed off as you can imagine. It usually happens when the nurses are tending to her or moving her. Or as Dave says when he's bugging her...but today...Dave asked Jen to squeeze his hand and she did! So we know she knows we are there. Cheering her on, calming her down and loving her more than we ever have!

Thank you for all the love and support...We sit at the hospital and talk about how amazing it is to be surrounded and supported by such good people.
Keep the prayers coming!
Goodnight.

March 3rd

noreply@blogger.com (Jen) — Thu, 04 Mar 2010 04:22:00 +0000

Jen definitely had a better day today than yesterday. She is still heavily sedated. The test done yesterday showed no signs of infection. Which in some ways was disappointing because they would be able to narrow in on and infection and treat her accordingly...and less of a guessing game. We are so anxiously waiting to find out what is causing all these problems. She was not stable enough to do the lung biopsy today. However, she is showing signs of improvement. The dr's have started high doses of steroids. She had a restful night last night and day today for the most part. We believe the steroids are helping...and as the dr put it...jen took baby steps in the right direction. Her dependency on the ventilator has decreased slightly. Huge and happy news for us. There is still a whole lot to figure out. Wish I could tell you more...and I have left out a lot of important things I am sure..that is all for now.

We are so grateful to ALL of you for the prayers and phone calls emails and messages! Thank you so much!

I also want to say a extra special thank you to Pam and Courtney...love you guys xo

Jen

noreply@blogger.com (Jen) — Tue, 02 Mar 2010 12:58:00 +0000

The latest on Jen is that she was admitted to the hospital last tuesday for pneumonia. Unfortunately, she has only been getting worse. Once again please forgive me for not knowing all the medical terms. As things stand now they believe that she may have a bacterial infection that has started in her heart and has moved to her bloodstream. It has caused her lungs to fill with fluid. A severe eye infection in both eyes...along with other problems I am sure but these are the biggest. She will undergo a test today for her heart and a lung biopsy tomorrow. The goal is to find where the infection is and then aggressively treat it. Nothing is confirmed but based on the symptoms she is having they think the infection started in the upper chamber of her heart. We will HOPEFULLY know more today or tomorrow.

In the meantime Jen was put on a ventilator last night because she was struggling too much to breathe. This was an agonizing decision for her...for everybody. Everything happened so fast. It became apparant that we had no other choice. She would have been put on the ventilator today to undergo these tests -- so this gave her body a break and a chance to rest. She is heavily sedated. Dave has not left her side. My mom is caring for the kids and making trips back and forth. The kids do not know the latest changes so please use discretion if you are talking around your children. We are hoping that we get to the source of the problem and beging treating it...with the goal of getting Jen off the ventilator as soon as possible. The dr's are saying 2-3 days.

We need your prayers and positive energy. We are scared. Jen is scared.
Thank you all so much for your support. We know your prayers work! I will blog again when I know more.

xo Meg

HOME SWEET HOME

noreply@blogger.com (Jen) — Thu, 07 Jan 2010 03:36:00 +0000

Hello all my Loves

Well we are officially coming home on Saturday 1/9/10. The tickets have been purchased, the bags are being packed as we speak & we are ready to be home.
We had a final conference with Dr. Paul Martin with ALOT of information-way too much to put down here. I don't know about you but I thought that I was going to come to Seattle for 3 or 4 months, have a bone marrow transplant & come home-ummm not the case. I didn't realize how compromised my immune system would be. Apparently, the next year of my life is going to be very high maintenance! 2 more days of appointments, instructions, etc. and we will be on our way. Soooo in that light we need to lay a few ground rules.

Play Dates & Socializing

We are so looking forward to seeing all of you and reconnecting in person after being away for so
long. It may take us some time so please be patient with us. This goes for returning emails, cards, telephone calls, voice mails, etc. Please, please be patient with us. For example, I know that during my first week home I will be at Jefferson for most of the day on Monday and may be going down there 2 to 3 times a week on top getting the boys back and forth to 2 different schools with different activities and just plain old being at home and with my husband and my kids. So if it takes us a awhile to respond it is not because we do not want to but it is a matter of time and energy! Also, it is imperative that if you do come over you do not have a cold, runny nose, cough, fever or even a thought that you may be getting sick. One illness lands me in the hospital indefinetly.

It is important that we don't host playdates at our house for now.
We would love to play with you it just can't be at our house for the time being.

In terms of talking about the last few months we are more than happy to talk about what we have "been through". Please choose your words wisely around David & Dominic-they are very deep thinkers and sometimes it takes me weeks before I find out what has been bothering them. Boys don't seem to want to "share" like us girls! They seem to bottle it up in there and we have to pull it out piece by piece! Seattle for these guys has been a great experience & The Hutch School was a great place for them to spend their days while I was having all of my "work" done. Their classmates were all going through similar experiences.

You have all been apart of this amazing journey with us-of which I could never have made it without you all. We are so looking for to the happier times of 2010!!! Happy New Year to all of you My Dear Friends and Family
I love you
PS And as usual - please leave your shoes at the door :)

noreply@blogger.com (Jen) — Wed, 23 Dec 2009 14:37:00 +0000

12/22/09: Hi guys - just want to wish you all the happiest of holidays. Sounds so inadequate. You have no idea how much you have helped us all here with Jen. Jen, because of her condition didn't get to read the blog on a regular basis but we did. And, your comments and support got us through some very trying times. We were so grateful to benefit from the wishes you were sending to her and now she can see what faithful and good friends she has in all of you. And, we can see why you are so important in her life.

Thank you for being there. Thank you for all your prayers. We hope for you in 2010: good health, few worries and more love than your heart can hold.

Thanks again,
jo/mom/granny - signing off

Thank You

noreply@blogger.com (Jen) — Tue, 15 Dec 2009 04:07:00 +0000

Well, needless to say we have begun "packing up". I feel like a 5 year old waiting for Christmas-ironically I am a 38 year old waiting for Christmas to be over so I can go home.... crazy.
In packing things up I came across my little black and white box of positive energy. While I've been here I have kept every card, gift, note, email etc.. and whenever I feel down I go to my box and read all of your notes. I can't help but feel better. It is amazing. You are all so amazing!
THANK YOU! THANK YOU! THANK YOU!
I don't know how I will ever Thank all of you enough. It means the world to me...
At the Hutch School (where David & Dominic attend here in Seattle) there is a central theme "What Cancer Cannot Do" and the kids keep in mind all that cancer cannot take away. I could not help but think what cancer can do-It has brought so much to my life that I never would have known. It has brought family together, friends in touch, new friends & relationships. I know it has brought more good than bad. My Mom, Husband & Sister-they are so faithful and constant-it brings tears to my eyes...
I love you guys.
I will be paying it forward!!!

Counting Down

noreply@blogger.com (Jen) — Sun, 13 Dec 2009 00:07:00 +0000

Well, the countdown begins. Pending ABSOLUTELY NO GLICHES IN MY PROGRAM & I MEAN NOT ONE!! I will officially be "discharged" to go home on January 6th! I cannot tell you what this means to me. The next few weeks are going to be torture so anyone who can speed this up feel free to go ahead and get on it! The kids & my Mom get to go home on the 29th and Dave and I will be right behind them! Dave is currently fighting a cold so he has been sleeping in the kids bed. I am sooooo paranoid but it's yet another small miracle that I haven't gotten a cold yet.
I have begun tapering down off my prednisone which is responsible for a whole host of side effects-one being this diabetes which we all know MAKES ME CRAZY! Diabetes is torture in it's worst form. I only see my team once a week now and my blood counts are "normal"-whatever that is..... I have decided that normal will no longer exist in my world. Everyone keep the prayers coming-this is the true test. I need to get off the prednisone which is keeping my graft vs. host disease in check. A slow weining off prednisone in the hopes that this body here won't notice and just keep on healing!!!
I don't know what I would do without you guys. You keep me going. Thank you!

Miracle

noreply@blogger.com (Jen) — Tue, 08 Dec 2009 03:54:00 +0000

I meet with the my transplant team 2x a week - Monday & Thursday & I am on the red team. There is usually my nurse Jackie (who is a constant-she doesn't rotate), a fellow-almost a Dr. and the attending physician (who is basically the head Dr.-who comes in after all the details have been worked out, makes an appearance, gives his input and leaves). I think that is the hierarchy-anyway it's close. Well, the fellows and the attendings rotate what seems like weekly but should only be monthly-I think. And it is the end of the year-and one of them is going on sabatical blah, blah, blah. My point is that I have seen quite a few Dr.'s in the last 3 months. All of who have read my chart (I hope), all who know what what down with my liver. Which was during the transplant-actually after the actual transplant I started having trouble with my liver. They (The Team) could not figure out what the problem was but what they did know was that my bilirubin was on the rise! And rise is did to over 30-keep in mind .2 to 1.3 is a normal bilirubin level. I became a yellow/orange, was in the most extreme pain I have ever been in my life, bloodshot eyes, I was hallucinating and basically don't remember alot about that week.
ANYWAY, I got a new attending on the team today - a Dr. Paul Martin. I like him-I like all of them. So, the usually greetings, blah, blah, blah, I begin complaining about my diabetes-which is driving my crazy-for those of you who don't know I am now a type 1 diabetic and it sucks!
Well, Dr. Martin says "Well, I just came to meet the miracle". I'm like "oh really-who's that?"
He's like "You realize that the number of people who survive a bilirubin of 30 is less than 2%? Don't look a gift horse in the mouth"
My hands flew to my face, I started crying and have hardly stopped all day. I looked around the room at the others there and over to my husband who was as clueless as I was. No one ever told us. The team never warned Dave, my Mom, Meg-no one knew that I was likely to die in that hospital only a few blocks from where I sit right now.
NOW DOESN'T THAT PUT THINGS IN PERSPECTIVE~

Still Out Here in Seattle

noreply@blogger.com (Jen) — Tue, 01 Dec 2009 02:02:00 +0000

Well all of our visitors are gone and it seems WE ARE STILL HERE! YEP-WE'RE STILL HERE!
I feel like we will never leave and last night as Joey was packing to go me and the two little boys curled up in my Mom's bed, licking our wounds, wondering why we couldn't go too.. It really is hard. HOME, HOME, HOME. There is nothing like home for our family. Every vacation we have been on, every stint down the shore=home was always good to go home to. My heart feels broken. My sister says home will cure me and I know it to be true. I truly ventured out Saturday-Michaels, and Outback to eat-you can't imagine. I was so friggin paranoid the whole time that I actually considered eating in the car to avoid any and all possibility of attracting the swine flu! Or any flu for that matter. I miss life so terribly and one more thing. I am really sorry if I am suppose to be all happy and ho hum but that is IMPOSSIBLE FOR ME! It is what it is so I will not be offended if you don't want to read-believe me-this is therapy in it's truest form!
My mom went to the Dr. about her eye which is "hangin in" no pun intended. For those of you who don't know she struggling with a retina issue that might actually "break" Please keep her in your prayers. It would be really nice if she got to keep her eyesight in her left eye! I'll try to keep up-sorry - I really do love you

Good News or Bad News

noreply@blogger.com (Jen) — Fri, 20 Nov 2009 16:11:00 +0000

Ok-I get all dressed up and believe me I was dressed up-which means I was not wearing sweats or those killer moccasins that Heidi gave me. There was the kids art show @ the Hutch school which was awesome! My kids are awesome. I could go on and on about them alone. So I put on my size 4 riding pants-which I was so proud to get into when I bought them now they are 7 sizes too big and look pathetic, my hot pink sweater, and my riding boots. I did not feel like a million bucks. Fine. I got out of bed and went to clinic. I am losing weight-104-they are not happy. I am a type 1 diabetic which now explains alot-I guess. I also got the announcement from the attending physician that I am CANCER FREE! Is that real-I guess. I guess I am not making cancer cells. This whole diabetic thing is a pain in the ass. I don't understand it but Dave does-he is amazing. He wraps his mind around whatever they say, takes it in stride and we move on. I don't know what I would do without him. I love you Dave....

I want to taste food

noreply@blogger.com (Jen) — Thu, 19 Nov 2009 03:07:00 +0000

The worst, the absolute worst, is not tasting food. I am missing a taste bud, many, some, a couple, a few. Does it matter? Nothing taste right. It is so hard to eat!!! I have eaten I cannot tell you how many pints of Ben & Jerry's ice cream because it is so rich that I can taste it. I am sure I am now a diabetic. I cannot go in public. That stinks too. I go from the house, to the car, to the clinic, to the car, to the house! Great huh. Every morning I look out the window, across the bay and thank God that I am not in that hospital. Isn't it ironic that I can see my hospital room from our bed. I do have alot to be greatful for. And of course what would I do with out the support of all of you. And I am not being cliche-really I'm not. Thank you :)

It's Only Me

noreply@blogger.com (Jen) — Wed, 18 Nov 2009 00:35:00 +0000

I cannot tell you how hard it is to to post on this blog. It is like eating something you vomited so violently that the thought is so repulsive you tremble. I have been in and out of bed and am so dreadfully homesick that I can only cry most of the time. I hate to undo all of the positive that my Mom & Sister that have undone. I apologize. I don't know where to begin and to be honest it will probably be years before I can truly remember everything. There is over a week of my life that I have forgotten and many stories to be told. My eyesight is very bad and I find myself typing and retyping because the words are not what they seem. I am beginning to eat and am a very 106 lbs. I am totally bald and somehow I like it - it a way. I am in a resourse center waiting for a transfusion of microfungion, this is after an hour long MRI (very noisy), a poova treatment which is like a tanning bed only much shorter and to try to kill somekind of graft vs host disease that is going on that makes me itch CONTINUOUSLY!!!!
Have to stop now-need to go find my transfusion-I love you all you have no idea-I think of coming home every day-EVERY DAY! BABY STEPS FOR ME.....I WILL NEVER BE THE SAME

noreply@blogger.com (Jen) — Tue, 17 Nov 2009 01:41:00 +0000

day +40 - We got wonderful news today. First of all, Jen's bone marrow shows that the cells are making a nice little home for themselves in her bones. She will have a MRI tomorrow to see how they look in other areas of her body. Secondly, the "team" has decided to start tapering the steroids and that's one of the first steps towards getting out of Seattle and back home. We were warned early on that the tapering is very gradual cause they don't want to undo any of the good the steroids have done. But, her liver enzymes are still going down on a daily basis and all her tests are looking good so the tapering will begin tomorrow. You must remember that they tried to taper the Prednisone before and Jen started to have trouble again so she will be watched carefully so they can intercede if any signs of decline appear. But, they are very hopeful that she's ready for tapering and we are very hopeful too that this time will be the beginning of getting her off these double edged drugs. Jen is slowly getting her appetite back too though her weight has not increased - mine probably has though as she seems to be on an ice cream kick and who can resist ice cream! Brings out the kid in all of us.

So, I'll go for now and try to find where Jen hid the Ben and Jerry's. Until next time, keep good thoughts coming our way.

jo/mom/granny

Day +35

noreply@blogger.com (Jen) — Fri, 13 Nov 2009 06:17:00 +0000

Jen got good news today in that she will only have to go to the clinic 3 days a week. She has been going everyday including weekends and it was really starting to take a toll on her. This is very encouraging news!!

I hope Jen feels the progress she is making. She is doing so great and Dave and my mom have taken such good care of her.

We try to keep the blogs on the positive side...I say we but this is only my second time blogging. But anyway..my mom tries to report the facts and leave out what we think Jen is feeling. Hopefully soon Jen will tell her story. But, tonight I feel so compelled to express what a living hell this is. No one should ever have to be put through the agony that Jen has gone through. No mother or husband or child or sister should ever have to see someone they love suffer. When this started we were so focused on the beginning and the end. Jen was diagnosed and that was heartbreaking and scary. But, then we moved on to...What do we do? How do we fix it? There is no mention of the middle. The recovering part...the patience part...the waiting part...

I know this is the hardest part for my sister..

I see the frustration in her eyes. I know she wishes she was progressing faster. She is exhausted. She is weak. She is discouraged at times. She feels negative. She feels anger. She is scared. She wants to go home. But, she keeps going and she is amazing!

Alot of pictures have been taken. But, the pictures are on several different cameras and once I can compile them all we will be able to post them in some type of order. Until then I want to share the most recent one taken on Halloween. She's beautiful...isn't she?

xo Meg

noreply@blogger.com (Jen) — Wed, 11 Nov 2009 18:47:00 +0000

Day +34 - Jen had her bone marrow biopsy today. Actually, it was the most stress-free, pain-free biopsy she's had since this whole disease started. The nurse anesthetist and the nurse marrow collector were so great; they took care of making sure Jen suffered no pain and worked quickly and were the sweetest women - everything you could ask for when undergoing this procedure. We are waiting for results. We also got to meet Jamie Moyer who runs a foundation for children with cancer in Seattle. Apparently, he was with the Mariners organization a long time before going to the Phillies and started his foundation then. He asked Jen how everything was going with her illness and took off his world series championship ring and let her hold it and look at it. It was gigantic! He was really nice and gave autographs for David and Dominic. That was our thrill for the day. Not much else to report. A lot of runny noses in the house from the children but we're trying our best to keep Jen germ-free (no small task). The sun is shining today but that's the first time in many days - lots of rain and dark skies. We'll send along updates as they come in.

jo/mom/granny

noreply@blogger.com (Jen) — Sun, 08 Nov 2009 04:49:00 +0000

Day + 30: The preliminary results of the liver biopsy showed some inflammation and GVH but nothing conclusive to explain the variables in her liver enzymes. Jen says the procedure wasn't that bad. They gave her a local to the site and that seemed to take care of her pain. I imagine a complete pathology report will be available next week. So right now, none of her meds have been changed and no other tests on her liver planned. Tuesday she's scheduled for the bone marrow bx which was cancelled this week. She has another rash over her body which is extremely bothersome; another GVHD side effect. She's eating a little better but not much change in her weight gain as of yet. She's hanging in there and hoping (as we all are) that her levels will start to decrease and her liver will do its job so we can cross off this complication ASAP. Funny, how the grafting isn't even mentioned anymore by the 'team'. The only numbers they care about right now all pertain to her liver. How we used to hang onto every blood cell that was formed and now we worry about bilirubins, SGOT's, SGPT's - whatever THEY are!!!

We'll keep in touch.
jo/mom/granny

noreply@blogger.com (Jen) — Wed, 04 Nov 2009 17:44:00 +0000

Day +28
The liver problems persist as Jen's enzyme levels keep fluctuating and they are concerned about this. They have played with her medications and their dosages but have decided that a liver biopsy is in order. It is scheduled for Friday. Friday was supposed to be the day for her bone marrow biopsy but they have moved that to next week so it shows us they are anxious to deal with this liver problem which, by the way, seems to be their only concern. Again, we'll have to wait for findings. She had a liver ultrasound (her 2nd) yesterday. Don't know whether or not they had results from that when they decided on the biopsy. Jen is tired and frustrated and disappointed in this persistent problem as we all are. We'll let you know results when we do.

jo/mom/granny

noreply@blogger.com (Jen) — Mon, 02 Nov 2009 23:37:00 +0000

Day +26 I actually posted last Wednesday but apparently it didn't go where I wanted it to so I thought you guys had an idea what was going on here. Sorry. For Christmas we're asking for time cause although you'd think we have a lot of it, it goes so quickly one cannot get everything done one wants to.

It's been one week since Jen's release. She has had to go to Outpatient Clinic every day since getting out of the hospital so technically she's home but time-wise she spends a lot of time there getting blood drawn (daily) plus other appointments as they see fit to care for her. She's still having liver problems and they keep adjusting, adding, removing various medications to see what works. She's getting infused at home by Dr. Dave who does a bang-up job seeing to her medications and fluids and even has various "shakes" filled with protein and calories to help her get some meat back on her bones. Jen's energy level varies so sometimes she's resting in bed but also hangs out with us downstairs when her pep level increases. Unfortunately, she'll have to have a bone marrow bx this week (Thursday) which no one (especially Jen) is looking forward to but it's part of their protocol and must be done. I'll let you know how that goes.

This past weekend Tom (Meg's husband) and Anthony (Meg's son) came for a long weekend and we were all so happy to see them, especially little Tommy who missed his playmate (Tom)!!! It was a wonderful weekend.

I hope this gives you an idea of our lives here. We'll keep in touch.

jo/mom/granny