I've been meaning to edit this post as a Day 100 post and move it over here for quite some time...But in the middle of being a college student, that hasn't happened. So, I moved this post, unedited, from my blog.

A side note...Thanksgiving was great. It was the first time since Christmas last year that all our family was able to be back together. It was GREAT! We are so thankful that Mary continues to be cancer free and that long term effects of GVHD have been kept at bay. There are still things she can't do...But fortunately that list continues to grow shorter and the list of things she can do and places she can now go continues to grow. Yes, our family has a lot to be thankful for this year.

It's been just a few days over a year since we found out that the Plasmacytoma tumor Mary had removed in December of 2005 had progressed into Multiple Myeloma. Anyone who was at PUMP/PSP remember those few days and weeks that ensued? I don't remember much...Throwing my phone across a room...Crying in a stranger's arms in front of my kids at PSP...Calling Buddy and telling her she HAD to come and get me that afternoon...Deciding to take time off of school and move home. I don't remember this, but I do know that much time was spent at the Grauls, Tuckers, Whites, and Crumrines during the three weeks between when I first found out that Mary had cancer again and when I hopped in the car and waved farewell to the city and church that had I had called home for two years (Just as much time has been spent at those four homes this year has I have 'rested' from my 'job' on the occasional weekend off).

And it's hard to believe that was a year ago. Because in some ways it feels like forever; when I can't remember what I ever did before I ended up at this part of my life...Or when I can't remember what Mary's head looked like when it did have hair. And some times it feels like yesterday; when I can't remember how the heck I got here...Or when I can only remember my sister from before cancer...way before cancer. In some ways it's just been another page in my life; something ordinary and common place. In others though, it's turned my entire world upside down. You could ask me to tell you what it's like, and my honest answer would have to be that I can't. Sure, I can tell you what our days are like. But I don't have words to explain to you what the last year has been. Heck, I don't even have words to tell you about the people and the community that have been such a huge part of my life in the last year. And sometimes that feels like such a small (but important) part of this.

It's hard to even believe that Mary had the second of the planned tandem stem cell transplants 50 days ago already. That 50 days ago, I watch life blood flow back into her body. A body that had been beaten down by a previous transplant, chemotherapy, and radiation. I watched LIFE flow back into that body. Cells that give life. I don't know what God was doing that night as I sat there on the floor of the SCCA with these blind-as-blind-get-eyes of mine staring up at my precious sister, but like any other person who has flawless vision, I was able to see the perfect snowflake clusters of life-giving cells run into Mary's body. Don't worry, I haven't been able to see anything since then...It was just a one time deal. I saw those cells. Millions and millions of them. And I've gotten to see them grow in my sister. And build up in her a new strength. A new strength and an unrelenting determination: to never give up. I've also watched her struggle against them, against GVHD and against infection. Seeing those cells 50 days ago was like seeing a miracle. Because I saw them in the beginning. The very beginning. And I have seen them struggle. And I have watched them win; over and over and over again; day by day by day. And I will see them finish, victoriously.

50 days ago, my plea was for life.






















Today my plea is for life more abundantly.

Day 72

My bags are all packed. Everything made it into the car. The alarm is set to go off in about an hour and a half. And I'm busy doing all of the things that I've been doing for so long. Cuddling up to my sister, rubbing her fuzzy head, holding her hand, and for a few minutes sleeping. I won't be doing those things every day anymore. And I think the separation anxiety is getting to me. Yes...I'm going back to school.

I never thought I would have had an apartment with my big sister. We've lived over here with each other for six months now. And I've loved being able to spend this time with her. I wouldn't trade it for the world.

My first day of school is Monday, which I THOUGHT was a holiday...I guess when you pay for school they can do that. And I have class at 8am. I'm thrilled about that. At least when I'm here I get to ride a cool bus and take somebody with me.

Anyways, I wanted to say thanks to all of you for your love and encouragement and support while we've been over here. And thanks for continuing to give that to Mary.

And thanks Mary...thanks for having me. Thanks for putting up with my disaster zone of a world some days and just letting me curl up with you for hours. And thanks for everything else, I couldn't even begin to tell you. I'm going to miss you so much. I love you lots and lots and lots big sister. I'm so glad you get to go with us to take me back to school.

Day 50.

Today (Wednesday) is a big day for us. Day 50. That's half way to 100, in case you need some help with your math. Half way until home. Did you hear me there...HALF WAY HOME!!!!! We've gotten to the half way mark after the second transplant! YAHOO! Not without more than enough excitement. Ups and downs. And lots of being worn out and tired and ready to go home...right this second. But with each day, Mary is getting stronger. And 100 is getting nearer. Events of the past couple of weeks...

...Four days at UofWMedCenter.
...Pulled Hickman Line because of infection.
...Days of sitting at the SCCA getting antibiotics and hydration through IVs because of a lack of a Hickman.
...A PICCline is put in to replace the Hickman.
...A HUGE cheer for antibiotics and hydration from home!
...A sad goodbye to the end of case rate starting today... :(
...Me going into anaphylactic shock. That one was a big concern to Mary's doctors...I've been a wired-chimp ever since from the meds. Icky stuff.
...Lots more hair on Mary's head...To match her boys.
...Even more pictures of said hair.
...And even more being homesick...This one has been the worst, I think, for both of us.
...Several games of Phase 10.
...Many movies and probably more naps.

Thanks for your thoughts, prayers, and encouraging words that have gotten us this far! We know they will continue to carry us through the next 50 days.

Day 35? 36? Not sure...

Hi Friends and Family...Well, I have PLENTY of time to post LOTS of updates now...seeing how Mary and I are now in lockdown on 8NE of the UofW Medical Center. Insert Mary yelling, "AGGGHHHHHHH!!!!!"

Yesterday morning was great. It started a lot another good morning you've heard about recently. :) We went to the doctor and he was impressed with the progress that Mary was making, which was good to hear. And she was feeling really good at that point. We got home from the clinic and Mary did her Physical Therapy exercises and was feeling a little worn out and thought she would take a quick nap, which really isn't anything unusual...So, I got her settled and the hydration set up and a movie put in and left her to her nap.

At 2ish something she yells at me that she needs me right away. Which is a very rare occurrence in our house. And so I come flying up and running into her room to see what is wrong. And she tells me she feels so warm. So I take her temperature, because she does feel so warm. It's 100.4. And I tell her I'm calling the clinic. She begs no. I tell her I'll take it again in 15 minutes and then call. But before 15 minutes comes and goes, she yells for me again. This time to say that her chest is hurting. And this time she is so cold that she is shaking the whole bed. And my entire body when I touch her. Talk about some cold chills...And her fever is up to 100.9. I call the clinic and tell them I need to talk to someone now. And so they transfer me to Dinah, the triage nurse, bless her heart I think the poor lady knows me far to well by now. And so while I'm on the phone with her, I'm busy getting clothes and shoes on Mary, shoes on myself, contemplating calling 911 while Mary keeps saying over and over, "Oh, it hurts, it hurts." While holding her chest. And throwing things we'll need for an overnight stay in the hospital into my backpack. I managed to do all of that and get us down and on the shuttle in about 10 minutes. Not sure how I did it, or how I managed not to completely unravel, but I did. So, Dinah called to make sure we were on our way, and then again as soon as she had us a room so that we could come straight back to the room instead of having to check in. We skipped go (wish we could have gotten $200!) and went back to room 45. Just in time for Mary to start vomiting. And I was SO greatful to have Dinah there to help me with that one. If you've never met this lady, and most of you haven't, she's the lady you want when things aren't well. Because she can make you feel better! Anyways, they got Mary's doctor down right away, started fluids and anti-nausea meds. Lots of different antibiotics (her fever was up to 103 by that point), and ran TONS of tests. And took even more blood. And didn't have a clue what was wrong at that point. So, then her doctors decided they wanted to admit her to the hospital...Transport by ambulance. I will say, I've never gotten to ride in one of those before. It was probably a lot cooler for me than for Mary. Although I did hold her hand and rub her monkey fuzz. :) We got to the hospital and things were a blur. Lots more doctors and nurses. Repeats of tests and blood draws and new different tests and blood draws. And while we still don't have answers to specific questions, like why Mary's heart started hurting yesterday (it doesn't anymore). We do know that her blood cultures started growing bacteria very rapidly. Within a few hours. We don't have a specific bacteria yet, or a specific protocol for treatment yet, so we're still on the broad spectrum of running bags of anything and everything all day long to keep all the bases covered. But we'll let you know as soon as we know! Thanks for all of your thoughts and prayers. And thanks especially for your encouraging words. This is the last place either one of us want to be spending the weekend! (Although Mary is glad I have no intention of leaving her). We miss you!

Day 7

We're already to a week. In a few ways, the last couple of days have gone quickly. Sheer exhaustion has come, for both of us, and I have settle into a rote routine again. A routine of "zombieness." Just doing what I need to do, when I need to do it, because that's what needs to be done. Even at 3 in the morning. Monday morning, Mary fell while getting up out of bed. That combined with a few other things (a continually dropping blood pressure for one) has lead to a couple of things. Increased hydration. We're up to 2.5 Liters a day. Um, that's 2 and a half of the huge Nalgene bottles, to put that into perspective for you. It takes about 12 hours to run. Also, we have a walker for Mary to use now as it provides more support than a cane but lets her get more exercise than a wheelchair, and this Friday Mary will be starting Physical Therapy. We have continued to struggle with finding a stable FK-506 level for Mary to take. Which leads to almost daily blood draws and multiple phone calls back and forth each evening to decipher and check results and decide a course of action. Hopefully we've got it figured out for now. We'll find out after our Friday morning blood draw though.

I am going to say, very loudly now, "WE HAVE A WONDERFUL DOCTOR!" I'll probably find myself saying it a lot more in the coming weeks, but it was most noticeable to me yesterday. I had found an odd spot on Mary's arm that I didn't like the looks of and wanted someone to check on, besides the fact that she was hurting much worse from falling than she was the day before. And after we were sent down to Triage, Triage called Diana and she called and talked to me downstairs and said she would rather make time to see us upstairs than have us seen downstairs. I couldn't have agreed more. Not only does she explain things wonderfully, but she has the kindest and gentlest spirit. She is one of the first doctors I have encountered over here who truly believes this, "You are going through a hard enough time already, I'm not going to do anything to make it any harder." And so she doesn't. Mary is having a hard time drinking and so instead of telling Mary to drink more, she gave her more hydration. Mary's been horribly nauseated (and I was waking up every two hours), so she gave us long acting pills that can be taken once every 12 hours that have really cut back on the amount that Mary has had to take everything else (only six or seven times a day now, YAY!). And Diana is full of encouragement. Even on the days when Mary and I feel like we've done nothing right, she is sure that we've done everything perfectly. And so even though I'm sure she'll never read this, I just wanted all of you to know, that there is someone in the background here at the SCCA who is really helping Mary and I out a lot. Thanks Diana. We appreciate all that you do for us!

And thank you friends and family for all of your thoughts and prayers. One week down...do you want to know how many to go?? (I don't want to talk about it, even if you do).

Day Two.

Things are going well. We heard that from the Doctor himself today. Everything looks good. They started Mary on some hydration since she's seeming to get a bit dehydrated with the nausea (it hasn't gone away yet, pray it does, please) and added Magnesium and Potassium to it since those levels are bottoming out thanks to the FK-506 (a wonderful anti-rejection drug that also causes tingling in your hands and legs). Mary's also been really tired, probably thanks to the radiation, like the nausea. Hopefully those effects will wear off in the next few days as we get further and further away from Day Zero. Jody successful had the Mahurkar line pulled yesterday. It's looking pretty hurty today and really red too. But she got to take the band-aid off and take a shower so she was really excited about that. I don't think there's anything exciting for now...Sleep anyone??

The real Day Zero post.

So, I didn't write about the actual Day Zero on Day Zero, sorry about that. It was a long and exhausting day for all three of us. The day started earliest for Jody. She had to be up at the SCCA at 7 something in the morning for a blood draw and for shots. Yuck. Then I took Mary for radiation at 9:30am. We were there until about 12:30. Jody came back up to the clinic around 11:30 and they started harvesting her stem cells a second time. After Mary got done with radiation, I took her home, put her to bed, and went back up to grab all of her prescriptions and get Jody. We got back to the apartment around 2:30ish and then Jody and I left and went to the store and got some groceries. We were out of bottled water and juice and other things like that, which will become a necessity in the next few weeks. We came back here and then I fell asleep for about an hour. Jody made sloppy joes for dinner and then we packed up and headed back up to the SCCA since we needed to be there at 5pm. Jody and Mary didn't plan on being there for long. I planned on being there for five hours. They were wrong, I was right (I also remember this from last time). Once we got there it took a little over two hours to run all of the fresh stem cells in. They were beautiful; I spent the better part of an hour looking at them. If you looked in the tubing, especially right close to where it was connected to the Hickman, you could actually see little clusters of stem cells. They looked like little snowflakes floating through this red stuff. And it was an image that isn't meant to be captured on film, so I didn't even try. Sorry for those of you who might go through the pictures on Flickr looking for it. And really, I could have tried, but that would have required flash and Mary's head really hurt. And I was too mesmerized at that point to pick up the camera again. Ask Jody. So, once we got all of the stem cells in, 6.6 million of them, Mary really started to feel the effects of the radiation. Nausea, vomiting, headache... It wasn't pleasant for her at all. Then they had to follow that up with some Magnesium since Mary's Mag levels have been trending down. Apparently that is one of the main side effects of one of the anti-rejection drugs that she is taking. Anyways, we finally got to leave around 10pm. YAY. And came home ready to sleep. The little bit nausea has prompted us to do the two hour med thing again; after all, I can say with confidence that I would rather wake up every two hours than deal with the alternative. That's about all there is to my life right now. Sleeping and waking up every two hours. Mary is pretty groggy from all of the meds but is doing really well besides that. Thanks for all of your prayers!