Moving Right Along

FROM CASSIE: Hello again! It's been a while and it seems like a good time for an update. Kurt and I are getting settled back into homelife again after the whirlwind of the last 6 months. My aunt Susan left last week after staying with us for the last month and half to help out when I needed 24/7 supervision so that Kurt could work. We appreciate all the good help and care she provided. While she was here we were able to cross something off her "bucket list" by taking her to the Rose Bowl Parade on New Year's Day. It was a fun, new experience for all of us.

So now it's healing time.... time to heal from the last 6 months of craziness. My doctors look at things in 3 month phases. So, in mid-February I should be able to come off a few of the 12 medicines that I take every day and be out of the woods for some (but not all) of the complications that come up after a transplant. I'll still be on some of the anti-rejection/anti-infection medicines and need to go for regular clinic visits for a year or longer. In another 3 months I should have enough of an immune system built up and the stamina to return to work, which I'm looking forward to. RAPP, the company that I work for, has been amazingly understanding and supportive during all of this. I count my boss and all the employees there as just a few of my many angels making my recovery possible.
Right now I'm continuing my weekly trips to the UCLA Oncology clinic in LA for blood tests and doctor visits. Depending on the blood test results I might get some sort of treatment through IV that day. This week my tests were good except my hemoglobin was low so I needed a blood transfusion. My liver and kidney function has stabilized from the problems I had a few weeks ago. Needing blood transfusions in the first 100 days after a bone marrow/stem cell transplant is normal because I'm still not fully producing red blood cells from my sister's stem cells. And any new red blood cells are being broken down a bit while they destroy any of my own residual red blood cells left in my body. Kurt said it's because my sister and I are both stubborn that our cells are duking it out. But I'm going to let her win this one. ;-)
I also still get weekly visits from a home nurse who gives me another IV of antibodies to pump up my immune system. Right now I have the immune system of a 2 1/2 month old. Pretty amazing. But also pretty young. So I still need to stay healthy and avoid crowds, kids, sick people and people who recently got immunizations. Needless to say, I go through a lot of anti-bacterial hand cleaner.
I received some more good news from my doctor. Barring any unforeseen circumstances, she thinks I'll be ok to travel by the end of March so I'll be flying home to Ohio to be a bridesmaid in my best friend, Nikki's wedding. We hadn't been sure whether I would be able to do it so it's very exciting to make plans to be a part of my friend's special day. It's now Operation "Grow Hair" for the wedding since I'm hoping to have a pixie cut by then so that I don't have to fool around with a wig. My hair's growing back pretty fast. Right now I have a bit of a GI Jane length going on, so keep your fingers crossed!
Also, Kurt's nephew Matthew is doing a project for school on Lymphoma. We were touched when he told us because it's just another example of how our friends and family have really rallied around us with support and interest throughout this whole diagnosis and treatment. We look forward to seeing how his project turns out.

I'm keeping busy with taking care of the house and catching up on things that I've missed or missed out on the last 6 months. In between rests, of course. I've been able to see some friends and catch up a bit, which has been nice. I'm even taking a floral design class once a week through the city parks department which has been a good, therapeutic way to do something creative and get out of the house. Some of you know that my mom was a florist so I thought I must have some natural talent in my genes somewhere! We'll see though. The picture here is my take-home from my last class. I'm also toying with learning to make jewelry, crochet and even a little wedding planning! Might as well take advantage of this time that I've been given.

That's it for now. I hope the new year is treating you all well! And I hope to see a lot more of you all this year.

Best Christmas Gift Ever

FROM CASSIE: My doctors gave me a great Christmas gift last week when they told me we didn't need to stay close to the hospital any more and could move back into our house in Long Beach. After the shock wore off, we made plans to head south ASAP. I realized that I hadn't slept in our house for over 2 months. By the Wednesday before Christmas we were back home and hanging up stockings by the chimney with care. Kurt was quite the Christmas elf dragging a last minute Christmas tree off the lot and home to decorate. We had a nice, relaxing Christmas Eve and day.

I have doctor's appointments every Monday and this week's went well. I had been feeling pretty worn out and still have side effects from all the medication I'm on, but my counts are looking good and my liver function has improved. Kidneys still have a little way to come so I get IV fluids every day at home but I'm feeling better and hoping to get another improved report on Monday. I now have the immune system of a 2 month old and will be getting weekly antibody IVs through February. Feeling stronger every day!

And Happy New Year to all! More to come on that soon. For now I'll just say I'm not sad to see 2009 go. It's been a rough one that I couldn't have made it through without the enormous support of amazing friends (old and new) and family. I'm so grateful. But, 2009, don't let the door hit 'ya on the way out..... actually let it. Here's to a happy, healthy 2010 for everyone full of new beginnings!

Back in action

FROM CASSIE: Had another stay in the hospital this past week and just got out last night. It's great to be back home (or in our "home away from home" apartment in LA) especially in time for Christmas. My doctors decided to put me back in the hospital because I have some liver function issues due to graft vs. host disease, which is common after a transplant, and lowered kidney function due to the heavy duty anti-rejection medicine I get via IV twice a day. The doctors have always said that "a little" graft vs. host disease is a good thing because it also helps keep the cancer away. So I can't complain. It's basically remnants of my stem cells reacting against all my sister's healthy stem cells inside me. I was in the hospital for about 9 days while the doctors got things under control, did a liver biopsy and ultrasounds and readjusted my medications. While there I had lots of nice visits from Kurt and Aunt Susan and we had time for some Christmas crafts, one of them pictured here. We made bead angel ornaments for Aunt Susan's granddaughters. They looked very sweet lined up in the hospital room window. Here's hoping this is the last hospital stay and that the recovery continues on at this point. I'm feeling better every day and excited for Christmas! Happy Holidays to everyone!

Kurt's Birthday

FROM CASSIE: We had a great time celebrating Kurt's birthday last week (before the return hospital trip). Here's a picture of the Reed/Brushwyler family complete with silly birthday glasses for all. We all agree that Piper wore them best. It was great to have Aunt Susan out here to help celebrate. She had silly glasses too but, unfortunately, isn't shown since she took the picture.

One step back but moving forward

FROM CASSIE: Time for an update. I'm back in the hospital for a few days while the doctors figure out why my liver is under some distress. This is common after a stem cell transplant because of all the anti-rejection medicines I've been taking. I had a regular doctor's check-up this past Monday and they decided to admit me after some blood tests for liver and kidney function came back high. I've had quite a few tests and medication changes since I've been back in the hospital so everything should get straightened out in the next couple of days. Peace of mind comes from knowing that the doctors here have pretty much seen it all so it's just a process of elimination and pinpointing exactly how my medication needs to be adjusted. Being back in the hospital isn't exactly where I'd like to be right now I still feel grateful that I was out of the hospital for Thanksgiving and for Kurt's birthday. And I'll be out of here soon... fingers crossed. Thanks for all the well wishes!

A Thanksgiving to Remember

FROM CASSIE: Kurt and I have so much to give thanks for this year. We're a little behind on updating this blog because, all of the sudden, things got pretty hectic. When I went in to the hospital for the stem cell transplant on 10/26 I was told to expect to be there for at least a month or more depending on how long it took the cells to graft and whether any complications arose. Well, after the transplant on 11/5, my doctors were surprised that my counts started rising after only a few days indicating that the cells were grafting. And ten days after the transplant they were starting to say I could be discharged! So 12 days after the transplant, on 11/17, I was discharged from the hospital and sent home with lots of medication and lots of instructions. This was both exciting and a little bit scary since it happened so fast. Our house in Long Beach is a little too far from UCLA for the doctor's comfort level so we're lucky to be staying at our friend Kristin's apartment in LA, close to the hospital. She's doing us an enormous favor with this "swap" by staying in our house in Long Beach. We don't know how long we'll be here but are prepared to stay at least a couple months. The idea is that we'll be close by the hospital in case any complications arise with me, like fevers, infections or other rejection indicators.

And things are going well. We have quite a little routine going. I get IVs of antibiotics and anti-rejection medicine every morning and every night. Kurt has learned how to do it and is on his way to becoming an honorary nurse, I'd say. He's very good. Kurt's sister, Lisa, came out from Chicago to help us the first week I was out of the hospital and she was a huge help. Her nurturing spirit and good nature made the transition out of the hospital much better for me and Kurt.

A home nurse comes out to give me another IV medicine weekly. I'm beginning to venture out on car rides a little more which feels good. I'm feeling stronger every day and trying to be patient with my progress. Some very smart people keep reminding me that my body has been through a lot. Sometimes I forget that and get anxious to be feeling back to normal right now. My doctors have been happy with my progress at check-ups. And the only slight speed bump has been an infection I picked up which is the reason for the extra antibiotics. Apparently it's common. So right now I have the immune system of a 24 day old baby. But that's a day more than yesterday! It's counted from 11/5, my new bone marrow birthday.

We thought I'd be spending Thanksgiving in the hospital so Kurt and I feel extra blessed to have spent it here together with Piper in Kristin's comfy apartment eating turkey dinner from Kristin and our friends, Stan and Naomi. Life is good.

In other big/huge/enormous news, the Poker Tournament and auction benefit that my company, RAPP, threw last Friday 11/20 for us was a huge success. I wasn't able to attend since I can't be around crowds just yet, but Kurt went and had a great time. I'm so grateful to work at a company that would go to the effort to put on such an amazing event to help an employee in need. Being that employee in need is very humbling (and a little uncomfortable) but it helps to know that everyone who attended had a great time together playing poker and winning great silent auction items. Kurt and I are so thankful and overwhelmed by the support and outcome. Here are some pictures from the event taken by our friend Jasen: http://gallery.me.com/jasenreyes#100162

I hope you all had a wonderful Thanksgiving enjoying friends and family! Until next time.....

Cassie and Piper

cassie and piper on the way to the dog beach - 2005