Friday, June 25, 2010

Going home after 2 months!

It's amazing that we have been gone from our home since April 17th, AND tomorrow marks the 2 month "anniversary" of Cayden's liver transplant. I was talking to Dan about the surgery on Wednesday as we did our 4 mile walk. It still blows me away that the surgery even happened. Everything seems like such a surreal, distant memory in my mind. The only reminders I still have from the surgery are this incredibly huge scar and sore muscles under my rib cage and in my side where the drain used to be.

We are so grateful to Dan's sister Kristi, and our brother-in-law Paul for having the 3 of us in their home for so long. Eight people under one roof is a lot, and another "little" guy will reside here pretty darn soon. We are very much hoping baby Nathan makes the scene before the end of the weekend, as we have our tickets booked and are getting packed to come home on Monday the 28th!
The doctors have been extremely pleased with Cayden's recovery. We were shocked Monday when the transplant cordinator and doctors said we were released to go home! We didn't expect that news for another week or so. Medications have been adjusted, and ironically, Cayden has no more pain from the surgery (yes, it's the pits being old). Also on Monday, we ran into Dr. Khan at the clinic, who happens to be one of the GI doctors we saw back in February on our emergency trip to Stanford. We hadn't seen him since our first trip even though we've been here so long. He had been keeping tabs on Cayden and was happy to hear about his recovery. When I mentioned that he was feeling good and I still had some pain, he said "Well, it will go away - after a long time. The kids bounce back quickly. Surgery is always much harder on the donor." Great! That's encouraging. :) I guess that's the price you pay for loving your kid and being willing to do anything to make sure that he is well and healthy!

So for now, Cayden continues to take a zillion pills each day. I've finally gotten really good at filling the pill box, recognizing each kind of medication and remembering what each one is for. Some of the pills he will take forever, and some he needs just for the next year to two years. The key for him will be to begin taking over responsibility for remembering to take his meds, as the time frame for the anti-rejection medication is so strict.

Last Sunday we celebrated Father's Day with not only a special breakfast and dinner ( back ribs - hickory smoked with homemade rub), but Kristi was the hero of the day when she whipped out a huge bag of water guns for everyone (including the adults) to have a waterfight in the back yard. Poor Grandpa Jim couldn't get away, so he was at the mercy of the grandkids! In addition, Cayden's birthday is coming up on the 29th - the day after we get home, so we'll have one last family celebration together here to celebrate his 17th birthday.

And so as this chapter of our lives comes to a close and we head back to Washington, we constantly remind ourselves of how blessed we are to have had so many friends, family, and people we don't even know praying for us throughout the transplant and recovery. The power of prayer is amazing, and we know that our God is a merciful and loving God. Our recovery and positive news is bittersweet, however. Just two days ago, I found out that my step-dad's daughter Kary, who is just 49 years old and lives in Arizona, is losing her year-long battle with an aggressive form of leukemia. Shortly after our surgeries, she received a long-awaited bone marrow transplant from her sister Kati, who was a perfect tissue match. Things were going well and her white cell count had increased through the month. But on Tuesday, she found out that the leukemia is back and there is nothing further that they can do. We are the fortunate ones who lived through a successful liver transplant. Kary has maintained a positive, strong attitude for an entire year, despite the fact that she has spent most of that year in hospitals. If you feel so inclined, please help our family pray for a miracle for Kary. The doctors have given her weeks to months at this point.
There is still so much that we have to do in our lives. We have a purpose that is yet unfullfilled. I am unsure of that purpose right now, but I continue to pray for clarity and for God to reveal his divine purpose, so that my life will glorify Him. To all of our friends in Washington - thank you. Thank you for your prayers, for your love, for your encouraging words, and for your support of our family. We couldn't have asked for a better support system. We will see you all very soon!

Tuesday, June 8, 2010

Dreaming of home...

There's no place like home...there's no place like home. I am VERY jealous. Cayden got a little taste of home over the weekend. While the circumstances of his visit were sad (attending the memorial for his grandmother), and the weather was not particularly fabulous, he got to sleep in his OWN bed.

As of yesterday, we are 6 weeks and one day post transplant. The further away we get from April 26th, the harder it seems to even think that we were both actually in the hospital. These days, I am bound and determined to feel better, although I am entirely ready to beg for mercy at my Thursday follow-up appointment to see if they'll budge on that 6 month waiting time for my "other" surgery. If it weren't for those issues, I would be feeling pretty fabulous about now.

Regardless of that thorn in my "middle", I have made great improvements since my last post. A couple of weeks ago, I could barely make it from the parking lot to a few stores in the mall without being totally exhausted. That was week 4. Last week (week 5), I was tired of not being able to do anything, so I forced myself to push harder even though I was still tired. I began the week walking a mile, then two, and by Wednesday, I was up to walking 5 miles without resting! On Friday, Dan and I walked the infamous "Dish" next to the Stanford University campus - a 3.5 mile oval route which takes you around two sattelite dishes, perched on top of the hill, overlooking the campus. It reminded me a little of the Chambers Creek golf course walking trail in University Place...on steriods. If you decide to go counter clockwise, it seems like you never stop going up. On the way back down, it seems like a steep, quick drop in elevation. You've practically have to put on the brakes to keep yourself from propelling forward, but what a view from the top. The good news is that I made it all the way around, without stopping to rest. :)

Cayden's eating a lot more now and had gained 2 pounds since his Thursday appointment. Last week the doctors put him back on a medication called Vancomycin, a strong antibiotic he was taking prior to surgery that kept his Ulcerative Colitis under control. It's crazy, but the cost for that medication if we didn't have insurance would be over $7,000 per month! Thank God for insurance. Yesterday, his blood draw revealed that his new liver is working fabulously and his level of anti-rejection medication is perfect. His magnesium level has also finally improved on its own, so the docs have decided to cut him back to just 1 blood draw and clinic visit per week. We even talked about the "H" word - HOME! They usually start by monitoring once per week, then once every two weeks. After that, they could let us go home, BUT the catch is that he and one of the 4 parents will have to fly back once a month for a few months for a blood draw and clinic visit with the liver team here in California. Eventually that will change to every 3 months, then 2 times a year. I am in the midst of checking with our insurance company to see if they will cover our travel costs to get to/from Stanford for these visits. Cross your fingers that we'll be home before the month's out!

It can be difficult to have so much idle time on our hands these days. One can only partake in so many walks, and I've given up on watching TV in trade for a more intellectually stimulating activity - reading books. Yes, after finishing all of the books I had purchased or brought with me, I have secured myself a Menlo Park Public Library library card! It's actually been fun. Since checking out 4 books on Friday, I have already read 2 and am half way through the third. If you've never read "In a Sunburned Country" by Bill Bryson or "Blink" by Malcolm Gladwell, they're definitely worth a read. The Bryson book is a hilarious account of his experiences researching and exploring all things Australia. Throughout the book, he perseverates on the fact that compared to the rest of the world, Australia is home to the largest number of critters that can kill a person. I'm not so sure I want to go there now! The book by Gladwell is a facsinating look at how it takes just seconds for our unconscious intuition to kick in - an easy read with lots of research that makes you say "Hmmmmm". The book I am currently reading is for people who are fanatical about punctuation and grammar (anal me again). In Eats, Shoots & Leaves, Lynne Truss - an English writer and journalist, explores the comical side of how lax societies (both English and American) have become regarding the use of punctuation - especially the apostrophe. It reminds me of the time I was driving through University Place on the way to Curtis High School and saw a city sign stating "Delivery's Only". I was mortified. The worst part of it was that the sign remained that way for several months. One day I noticed that someone had finally done something about it - it read "Delivery Only". How is it that a "public" sign like this can actually be posted in public with such a gross error? If you've ever found yourself "editing" just about anything you read, this book is for you!

As you can see, I like interesting non-fiction. I tend to gravitate towards books that help me "become a better me", but with the last few, I've been working on expanding my literary horizons. If you've got a great recommendation, let me know, and I'll put it on my summer reading list. I'll need it - we're canceling our cable when we get home!

Well, that's all from sunny Menlo Park, California. I'm trying really hard to push some sun up to Washington for everyone. I hope you appreciate my efforts!