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