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

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

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

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

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

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

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

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

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

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

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

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

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

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

27th October - tuesday

I'm so sorry guys - it's been a hectic few days since we got the word that Jen could be discharged.
Yesterday, they let her out of the hospital.
She got home late in the afternoon after meeting with the "team" and the transition nurse and the pharmacist.
Meg and I wanted to prepare the house for her arrival making it as germ-free as possible.

so, without much notice, the entire process was set in place and there was a lot for everyone to do. Now, she will have the chance to recoup at home.
she will have to go to the clinic frequently at first and then her visits will taper off as she progresses.
she's mostly tired but her counts are progressing wonderfully and her bilirubin is going down slowly.
thanks for your patience.
we'll talk to you soon. Hopefully, Jen will drop you a line.

Day +16
The results are in - her endoscope and colonoscopy shows she has GVHD in both the upper and slower GI system. Since the 'team' already started the protocol for GVHD, she's ahead of the game and will stay on her steroids at the current strength for the next couple of days. Then, if signs are good, they will start weaning steroids very slowly.

It is my pleasure, honor and privilege to let you know that Jen has TURNED THE CORNER!!! Her bilirubin fell 11 points, the transplant cells are right on track, multiplying as we speak!
With this disease and procedure, 24 hrs makes all the difference in the world. I'm sure you are wondering how things can turn around and be so positive in just a short time. Many times patients take a turn for the worse and it looks doubtful they will make it. The next week, they are discharged. This week, we watched Jen go to the bottom and now they are talking about her getting out of the hospital. It's a mystery to me but who cares how and why it happens like this, only that it happens. Jen will have to prove herself worthy of discharge - tonight they shut off her pain pump. She must begin eating food (she's been IV fed for several days). She must be able to get around on her own, including using the bathroom. Jen has her goals back - getting out of here on Monday. Yes, that's right, by Monday.

We know that most patients get re-admitted at some time because of fever, infection, etc. after discharge (actually I think all patients do) but Jen doesn't care if she's only home for a couple of days to regroup, she'll settle for that. Of course, her goal is to never set foot in UW again. All the IVs she's still on will become pills she'll take at home. Now it's our turn to take care of her. Scary thought but they'll teach us what we need to know.

We are so thankful to God and all his angels at the hospital and on this blog for getting us through this experience. We know we have a way to go but if you let us lean on you a little longer, we'll do fine. We'll keep blogging with daily updates - hopefully Jen will take over as blogger. It would be great for you to hear her point of view on all this.

Thank you friends, family, doctors, nurses for being there for us. Thank you Jen for fighting the good fight!

jo/mom/granny

day +15

i posted during the night for day +14 but can't seem to find it. Of course, I don't remember what I said. Well, it's now Wednesday AM and Jen is sleeping, receiving a bag of platelets. Today, they are going to do an endoscopy to look at what's going on. It should be able to confirm whether her problems are from GVHD or not. They will take a biopsy if need be. We'll have the results tomorrow, we're told.

It's not an easy time for Jen. All her counts are really going in the right direction. Even this AM, her bilirubin was down 8 points - great news! But, Jen is finding it harder to fight since she never gets a break from the pain, restlessness and anxiety she's going through. How many times can you tell her tomorrow will be better when it never seems to be: one more time, every day! All the side effects she's having are really hard to cope with. She's hardly out of bed, can't get comfortable and is receiving a multitude of drugs, antibiotics, supplements, glucose, anti this and that and pain meds - she can't sleep for more than 1 hr at a time. But she goes on, even though sometimes she doesn't want to.

Will let you know when we know.

Keep the prayers coming.

jo/mom/granny

Day +13
Things are still questionable whether it's GVHD but her bilirubin count stayed the same, not going up or down, a good sign. It's 24 hrs since steroids began. Her blood sugar has risen and she had to receive insulin (common with steroid use), lungs and kidneys are still clear and she's being watched very carefully. Jen, except for bathroom breaks, hasn't been out of bed. She complains of trouble walking and pain throughout her body. She was retaining fluids quite a bit but that seems to be under control now. Her jaundice looks a little better but really is still in full swing. Her rash is gone. She's getting a lot of pain meds which help but do not relieve all the pain. Still a waiting game. But, her wbc's and neutrophils are still forming so that is terrific news. Sorry there's not more to report but at this point, we are all taking one day at a time and hoping tomorrow will be better for her and her test results.

jo/mom/granny

Day +12 - ok - when Jen's bilirubin began to go up (now at 29) the doctors thought it was too early for her to get graft vs host disease. So, when the liver problems increased, they diagnosed the VOD. Now, since new symptoms are occurring which are not associated with VOD but are associated with GVHD (graft vs host disease), they are considering the latter as her diagnosis. So, GVHD is expected to occur, VOD sometimes occurs; GVHD is treatable with steroids (which they have started); VOD apparently is not treatable. So, we are told we should be rooting for GVHD instead of VOD - are you following all this - we know this is not easy for them, there are so many complications and each patient is different; we know it's a balancing act and caution must be taken not to disturb the engraftment. All we know is we want the right treatment for the right diagnosis and we want Jen to feel much better than she does right now. So, we're turning our attention to the treatment and results of this new protocol they've issued and we'll try to keep you up-to-date. This is a wonderful institution with wonderful doctors and staff. I am glad we are here for her treatment. We just want this to turn out RIGHT.

I'll be nicer tomorrow.

jo/mom/granny

day + 11

day 11

Well, we got more good news - neutrophils have shown up! But, of course, it seems lately, we get nothing for nothing as another complication has arisen. Jen has veno-occlusive disease of her liver - a fancy name for her capillaries and blood vessels not working well and not doing their job in her liver. The result is a very severe case of jaundice. Now, we are told that the liver is very resilient and can withstand this type of problem but the problem arises if it spills over to other organs which are not as resilient - like the kidneys or lungs. So far, so good but the next couple of days will be crucial. They don't want to be too aggressive with her treatment as they want the stem cells to continue doing their job so they are doubling one of her medications, giving her something to get rid of the fluid her body is retaining and wait and see. Right now, her lungs are clear and her kidneys are functioning normally. They will monitor these carefully. This has been the hardest time for Jen so far; expected by all reports but nonetheless no easier for her or us. So, we are not out of the woods yet but almost there so keep the prayers and good wishes coming and we hope to have really good news for you the next time we post.

jo/mom/granny

Day +10

Dave came up the stairs this morning and said....She has white blood cells!
Post more later! That's our girl!

Day +9

Not much to report in regard to the medical aspect of Jens progress. Thank goodness because my mom is better at relaying that information. Jen is still running a fever and now has developed a rash all over her body. It's uncomfortable and causes her to feel a burning sensation. This is said to be expected but still sucks so bad for Jen to have to deal with. She pretty much just hurts all over. She did reach a milestone in that today was the last day she would receive Methotrexate--which is a chemotherapy drug to fight off gvhd (graft vs host disease). We have anxiously been waiting for day ten. Days ten to fourteen are those magical days that will answer our prayers. These are the earliest days where we could see engraftment. We're told it will more likely take around day fourteen. The biggest event of the day was going to the hospital to shave jens hair. Up until yesterday she has maintained a full head of hair. She noticed last night it was really starting to fall out when she would run her hands through it. Today unlike the last time I cut her hair was not very emotional. It almost seem to be a task we had to check off the list of things we had to do in order to get through this and move forward. Chemo..check...transplant...check...shave head...check. The bravery I see in my sisters eyes is like nothing else I have ever seen. A little more than a month ago we cried like babies at the thought of her losing her hair and today it was just another part of the process. Another step towards recovering. She kept asking... does it look patchy? No, Jen it doesn't look patchy. Do I look like Britney Spears? No, Jen you don't look like Britney Spears? Do I look like a baby? No, Jen you don't look like a baby. What you do look like is the damn cutest thing I have ever seen. She has the most perfect little round head and big brown eyes. Then I asked can I take your picture? No, she said. Maybe tomorrow she will let me! I speak for all of us when I say how much we love reading your comments. Everyone of you are a source of strength, so thank you! Ron A. please know how much hope and support we feel from your posts, it means so much to our entire family!
xo Meg

Day +7 - A little better than yesterday but still with fever. Received 2 transfusions of rbc's and 1 of platelets, plus a variety of other medications - the fullest her mobile unit has been thus far. Jen was able to walk the hallways a few times but spent the rest of the day in bed, dozing off and on. Hardly eating at all and may soon receive IV supplementation if her appetite doesn't improve. Just trying to get through this week. Chloe Jennifer visited her today and she held her namesake for a short while - the best medicine she got all day! No results from yesterday's tests; hopefully good news tomorrow.

jo/mom/granny

Day +6: Today was a hard one for Jen. She's in the middle of this limbo with her counts being nothing and she's on many meds with many side effects. It's hard for her to keep anything down. Today, she ran her first fever. She's been lucky that her vital signs have remained normal for this long. But, today, one changed. She told me this AM that she felt like she was getting a fever and she was right. They respond very quickly when you have a fever - blood cultures, chest x-ray, urinalysis, etc. They have to find out the cause and find it quickly. Though she's been on an antibiotic since the transplant, a stronger one was started. Her IV fluids were increased, her morphine pump was sped up, she was put back on a host vs graft IV medication which had been stopped shortly after the transplant. We won't know much until the results come in. They say everyone runs fevers during this crucial time and 90% of the time, all test results come back negative - it's just par for the course. We're hoping she's in that percentage. We'll let you know how she is tomorrow.

jo/mom/granny

Day +4 - counts still going down and lots of challenges. There is a low dose chemotherapy that they give patients post transplant which help with graft vs host disease. Fortunately, the drug does help but has a miserable side effect called "mucositis". Well, Jen started taking the drug approx 2 days ago and the muco started right on schedule. Though they told us it would affect mainly her throat, she seems to have more trouble in her upper stomach/esophagus region. So, last night, when all else failed, they gave her a morphine pump. Not only does this help the pain immediately, but if you know Jen, she feels back in control since she's pushing the button to release the morphine. She's feeling much better now and trying to eat on her own. It will take about 6 more days before counts start back up so this will be a hard week for her. But, she's plugging along and coping as well as can be expected. Tomorrow is another day and next report may have totally different news for you.

PS - She still looks great, holding on to her hair, good color - she fools them all the time!

jo/mom/granny

I know you've been waiting. We're waiting too. Jen's counts, as expected, are hovering at 0. It's a waiting game. A crucial time in this whole process. The stem cells are getting in place. They want to do their job. She was given some red cells and platelets to get things started; part of the protocol. Food is not her friend so she'll get IV nourishment, part of the protocol. She's anxious and weak and waiting. We've received lots of info on what is going on in her body, what to expect and how long to wait - 10 to 14 days before engraftment. They told us to watch her counts. They go down to rock bottom and slowly start to build back up. They might fluctuate for awhile. Don't worry. When we see a trend of 3 days or more of slight increases with no decreases. engraftment is happening.

Ron A thank you so much for writing. Jen needed to hear from you. Actually, we've all been waiting to hear from you. Only you truly know what she is going through. You are her role model and she's trying to be brave like you.

I or someone else will write when we can. Sorry, things are a little busy here. Jen and her family appreciate your encouraging words. We worry about giving inaccurate information to you guys so please forgive the generalizing and being vague.

Thanks for your support.

jo/mom/granny

jo/mom/granny

DAY 0

Most of Tuesday 10/6, a day that will go down in infamy, was spent waiting to hear the whereabouts of those precious stem cells from that precious donor. Finally, about 2:00 PM, we got word that they arrived in the area and we were given 5:00 to 6:00 PM as "transplant time". Around 5:15 PM, the nurse brought in the precious bag containing the precious cells - long explanations followed and at 6:00 PM exactly, Jen was hooked up by that precious nurse to those precious cells. We were told that the transplant would take about 3-3 1/2 hrs with a slow drip but, if after the first 15 min there were no problems, they could increase the drip time. Well, Jen experienced no symptoms, all vital signs normal, no side effects, etc. so the drip was increased and the entire transplant was done by 8:30. I don't think she could have had a better experience. She's proving all the statistics wrong, so far: no mouth sores, limited vomiting, no hair loss. They tell us the next few days will be crucial and the above problems might show up but because she has "dodged the bullet" so well, they might be less severe.

All those prayers and good wishes from you all has so far paid off. We are feeling very confident that this transplant is going to be a success! We will definitely keep you informed when time allows as we try to spend as much time with Jen as possible. Just in case, please keep up the good work and we promise you Jen will also.

jo/mom/granny

Day -2

I believe there is a term chemo brain. I have it and if the is no such term than I have just created it! It is not comfortable in that brain and there are many distiburbances between the brain and these fingers batting away. Painful and stiff! Horribly Frustrating! Everything moves in slow motion and absolutely positivley must involve tears. I cry when my boys fight, when my sisters flight was delayed, when I felt I was going to throw up, when I pee into the little hats that they are collecting ALL my of bodily excrerement! YES ALL OF IT!! i CRY AND CRY YOU HAVE NO IDEA. I cannot stop and have given up trying which is quite a relief....
I also a considering becoming a pharmacyst because I now know various forms of anti-nauseous medications and actually have gone through oxy-codone withdrawl myself since checking in! Enough for now. I can barely keep my eyes open
I love you

Day -3

Everyday I feel a little sicker. Only pieces of my hair falling out here and there -no big clumps or anything. I am terribly neauseous all the time. It is horrible. Smells, tastes, smells & tastes-it's torturture. Everything is alot of work. I am very teary and just looking out the window makes me cry. How I long to be out with all of you. It is so hard. I am just patiently waiting for my sister & her babies to arrive. I hope that will help everyone. It's so hard not to cry. My poor husband-who doesn't know whether to come or go = I feel so bad for him....
I love you all so much-keep praying for me

Day Minus 4

It's 5:00 am and I have just begun another Bulsufan treatment. They gave me an extra shot of Adavan to help with the neausea. Which I really need. I just got off the phone with Meg who I CANNOT WAIT TO SEE!!!!!! Do any of you have any idea how desperate I am to see her? I can't wait!! I feel like it is Christmas! She will be here by Sunday afternoon. Praise God!

minus five and counting

Today is day 3 of chemotherapy for Jen. Day 1 she was admitted, had multiple hospital personnel visitors, etc. and then her first dose of chemotherapy began right around 12:30 PM our time and lasted exactly 1 hour. They have included anti-nauseous medication in the protocol and, though Jen did feel nauseous, the medication kept everything under control and actually she faired beautifully. Her biggest problem seems to be lack of sleep since nurses come to bother her all hours of the day and night.

Day 2 was much like Day 1 though Jen spent the day catching up on all that sleep she missed the night before. She actually fell asleep while talking to the chaplain(who did not take it personally). I must add that both day 1 and day 2 she managed to ride a stationay bike for2 miles so Jen is still being Jen and taking as good care of herself as she's able.

Day 3 (today) the protocol changed to the 2nd chemotherapy treatment which, for some reason, was started at 5:00 AM and lasted much longer than the first 2 days. She is tired but her side effects have really been minimal and I think she is doing great - still looks the same, eating some and playing by the rules.

I'm sure you guys all have a lot of questions which I may or may not be able to answer, but wanted you to know that SO FAR, SO GOOD. We'll keep in touch.

love to you all
jo/mom/granny

Let the Praying Begin

Well we had the final meeting with the Team yesterday and Dr. Applebaum (who I have to say is brilliant) gave the final recommendation to proceed with the transplant. It was very emotional for me. I sat at the table, crying through the entire meeting. Dr. Applebaum went through every detail, procedure, medication, side-effect, and protocol you can imagine, he never took his eyes from mine and delivered the news I knew he would. We are ready for transplant. I never not cry when I hear it. It is like the first time all over again. Every time...
He said to me "I have to tell you everything once and then we will only focus on getting you better". I cannot tell you how much it took me not to run from the room. He went on and on for a little over 30 minutes and then I signed the Consent for Transplant.
There were a few surprises during the meeting. I was not aware how advanced my myelofibrosis was/is-apparently it is in the "later" stages, advanced. I have a 1 in 10 chance of the mylelofibrosis recurring after transplant and the one that is always a surprise-68% of survival after transplant. How I want that to be 100%. I'll take what I can get. I need to get positive. I need to stop licking my wounds and get strong. I need to stop feeling sorry for myself. I need to surrender....
I have given myself until Sunday night.
Monday @ 7:00 am I will go to the University of WA Medical Center to have my central line put in and then Tuesday @ 8:00 am-I will check in for my 4 week stay at the beautiful, 5 star, University of Washington Medical Center where Fred Hutch owns 3 or 4 hepa-filtered floors.
I am scared to death...

We haven't forgotten about you guys - it's just that Jen is getting a major break from tests this week - a few blood draws here and there and today a meeting with the "team" to see if the protocol has changed at all now that they have all her results from the multitude of tests taken over the last few weeks. We're trying to take advantage of the free time by seeing the sights of the City. One small setback was that Dominic came down with a cold and was generous enough to pass it on to Granny. My boys love to "share". But, we're both feeling bettter; but right now, I'm barred from the Clinic because just one little "sniffle" and you're not allowed in.

We'll have more info soon. Love to all.
jo/mom/granny

All Positive!

Well it's seems we have now wrapped up the torturous testing. It was 10 days of test after test. I am telling you that by Wednesday of this week I was begging for the transplant just to end this poking and prodding. I told the transplant dr. (Dr. Applebaum) that compared to the last 10 days the transplant was going to be a piece of cake!
I got the schedule for next week and I do not have to go to the Clinic until WEDNESDAY-DO YOU HEAR ME - WEDNESDAY!! I feel like I'm on vacation! Wednesday will be more blood work, another test-which I can't remember and the final meeting with the transplant team called a Data Review Conference which is basically the review of all the test results, and the final recommendation for transplant. I will have my central line put in on Monday(9/28)-I hope-and be admitted on Tuesday(9/29) of the following week-just as planned. Chemo will begin on the 29th.
The biggest news of course is Meg is dialated to 2 and if she doesn't have this baby by Wednesday they will induce her and we will finally have our baby girl!
The weather has been amazing. I am hoping we go to the Zoo tomorrow & Pike Place Market and we need to find a cheaper grocery store because the prices around here just suck! It is so expensive you cannot believe it.
Dominic decided to get sick & has been running a fever for the past 24 hours and is a little sniffly. Let's keep our fingers crossed that I don't get it. He is such a cuddler especially when he doesn't feel good & I can't keep my hands off him! David is doing great and they are both so happy-it's very ironic. They love having Granny 24/7. Well that's it for now.... Love you guys

Mom's post

Hi - I was afraid we were getting too behind so I'm gonna sum up the week to date. Everything seemed a little easier after Friday's trauma (easy for me to say) and actually, Jen is still bruised and a little sore in her lower spine. There has been some hairy testing (isotopes put in her blood to follow how her heart functions and how it will react to the transplant), very thorough dental exams, and the craziest pulmonary function test ever performed by this wonderful technician who could take her "act" on the road. I must admit Jen BLEW away the competition during that test (get it?) The week consisted of a lot of listening, a lot of explaining, a lot of questions and more information than we could swallow. It's a good thing there are usually 6 ears listening to these people. We had a meeting where the pharmacist literally had a 3 ring binder filled with pills and their use, side effects and dosage amts and it seemed that most of them will be taken by Jen at some point over the next 3 months. We were told what she can eat, can't eat, can't be around, how to clean, what to clean, how long to clean, the lists go on and on. One thing they repeatedly emphasized was the fact that she cannot be near live flowers or potted plants. Apparently, soil or anything that grows in it is not a transplant recipient's friend. Guess you get the idea by now. We are receiving an education that we'll not forget!

There were some wonderful moments this week too. The Cancer Clinic has a drawing every week for patients and their families for things donated by companies or the general public - concert tickets, sports events, etc. Well, we were passing the receptionist's desk and there were Mariner's tickets so we asked about them. He told Dave to fill out some info and it would be put in the "hat" for the drawing - he should do this once/week. Later that afternoon, Dave got a call that we had won tickets for the Mariner's game that night (Wednesday) for box seats, and a parking pass, meaning no charge for anything but the food we bought. Unfortunately, Jen had had a really long day yesterday and just wanted to rest for the evening but Dave, David, Dominic and I went to the game. It wasn't the Phillies but we had a great time (and the Mariners won). There are wonderful people in this world who do little things like this to bring a smile to these kids faces. What a nice break for them (and us).

Well, I promise Jen will be back writing from her point of view soon but thought I'd let you into our week. There are many stories to tell but we'll save some of them for later. We're grateful for you being out there and we'll be back in touch real soon. Thanks for your prayers and support.

Spinal Tap

Isn't that the name of a band. Ironically, they play music in these procedure rooms as they are torturing you. They even let you pick it! I didn't pick Spinal Tap
Bone marrow biopsy and spinal tap yesterday. I am extremely sore today and polka dotted! My Mom was present during the entire procedure (for both) and said it was a little rough. Apparently, my bones are extremely strong which makes it difficult for them to get in for marrow and fluid. I asked for complete sedation which I thought meant they put you out and you wake up when it's over. I woke up whenever I felt pain-which totally sucked!!!
I started the day with an EKG which took a total of 10 seconds-now that's the way I like it. Went onto a blood draw-in which they were suppose to put in an IV & someone didn't so I ended up getting poked again to have the IV inserted for the procedure. I guess I should be happy I am getting a port and that will eliminate all of these pokes and bruises. I look like a junky. I was starving by the end of the day-stopped at Red Robin for a California Chicken Burger and headed home and to the bed! The weather is absolutely amazing here and was 85 today. The view from the back of the house is beyond belief and we wake up to the most amazing sunrises. A true gift.
There are positives all around me and I have to learn to focus on them. Woke up and took it easy this morning. I feel like I am trapped in a 90 year old body-everything is so stiff. Finally around 3 we ventured out and "did the Puyallup" which is the Western Washington State Fair that they have every September. It is much different than the last Puyallup I did. I think the boys enjoyed it. I am ready for a bath & bed.
I love you-every single one of you

Just The Beginning

Well yesterday officially began the transplant process. I checked in then went for a blood draw that took 2 sticks to complete (yeah fun). I then met with the nurse practioner that did a complete physical and TALKED ALOT! We then met with the transplant nurse, Jackie, who gave us a ton of information, explained to us how everything works. This place is a machine, a well run business. Everything is color coded (we are on the Red team), we have our own mailbox that MUST be checked daily. Every Friday we are given a schedule for the following week that is quite detailed in that it gives the time, place, who you are meeting with, how long the meeting will take, and what you can expect. It is absolutely amazing.
We found out that my donor is a 46 year old female that lives in the US. My blood type with go from A positive to B positive. Funny huh....
The boys are doing great. Dominic has informed us that he wants to live here and never leave. The Hutch School reminds me alot of Penn Charter, very small, very nurturing. David only has 1 other child in his class as of now-we are hoping for another soon-he told us she is very smart and is from Chicago. I think he likes her. They take alot of field trips and there is alot of reading. Dominic has his loose tooth that is not making any progress but finally convinced him that the tooth fairy (or ferry as Dominic likes to call her) will find us here in Seattle.
Sunday we had a wonderful luncheon at Julie & Rudy's house. The food was great, of course, and so was the company. I can't remember the last time I saw Joyce, Charlie or Stephen or Eric for that matter. See, this disease works in mysterious ways in bringing family together. For that I am so grateful. I may not be so grateful tomorrow after the bone marrow biopsy & possible spinal tap!!!
Miss Heather came by(my sister's best friend who lives here locally) on Tuesday with a slew of children in tow. She brought enough desserts that I will not have to worry about losing any weight!!! She is an amazing baker-don't tell my Mom... She will be over for Sunday dinner & I am welcoming her with open arms for any visit we can get. She is a ray of sunshine & I think I love her!
I am off for another 4 hours or so of testing and consultations. Will post more....
I love all of you. Thank you for all of your support and well wishes. It means the world to me...

Short Hair

Made a visit to the Salon tonight-in preparation of my bald days in the near future-my hair is now VERY SHORT. I would say in the neighborhood on crew cutish...
Joey is moved into Megs, the house is emptier without my big boy here. He is like (3) people acutally. I always said Joey was like a puppy. Ya know how puppies paws are really big and haven't really caught up with the rest of their bodies, they are kind of clumsy, happy, funny-Joey is my puppy...I will miss him terribly.
The boys have made it to Wyoming. Where is Wyoming anyway? I am now down to only hours left in my home. I hope I'm ready for this..

On The Road Again

Well Dave & Poppy left EARLY this morning to begin the drive to Seattle. Meg so generously donated her car for the road portion of the trip and it was filled to the brim. You could not have fit a piece of paper in the back of the Pilot. They have made it to Iowa. Not bad for 14 hours of driving! Slackers.
The house is looking emptier and emptier. I keep finding more and more things "I should bring" Lot's of goodbye's ~Makes me cry...

10/10 Match

I am thrilled!!!!!!!!!!!!!! I just received an email that my back up donor is a 10/10 Match!!!!!!!
Keep praying it is working. Miracles have begun!!!!!!!!!!!!!!!!!!!!!!!!

Here We Go

Your support is amazing. I have gathered a small box of letters, cards, angels and saints and I think I am armed to the teeth for the battle I am about to begin. I will bring it with me on my journey and go to my box of magic for strength and courage because let me tell ya I am scared to death - no pun intended...
I honestly could not do it without you. Thank you....
I will post daily. Feel no obligation to read daily. This is mearly to save my Mom and Sister from making 20 phone calls and from sitting endlessly on the phone. This is also very theraputic for me... I will miss you guys. I love you .. Keep me in your prayers...