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...