We are back from Cleveland. Joe was discharged from the hospital last night; a few days later than anticipated. Joe was still spiking fevers several times a day, and each day the spikes seemed to be a bit higher. However, there was no way that Joe was going to miss this trip to Cleveland. So last night, Joe made it back to home sweet home!This morning, Joe's parents arrived on our doorstep at 6:45am. We were joking around that it felt like Joe just finished five and a half weeks of summer camp, and then we were heading off for a family vacation! Or maybe a field trip.
Traveling to Cleveland went smoothly. We arrived a bit early, and Joe was kept busy filling out pages and pages of forms. When we were called into the office, Joe had a little label slapped on his shoulder. It really made it seem like Joe was a kid on a field trip...except these days, name tags are usually slapped on the back of a kid, i think.
The meeting definitely did not go as planned. But we don't believe that this is a bad thing. After much discussion, it was decided that Cleveland may not be the best place for Joe to receive treatment after all. I'd rather not go into detail here, but by the end of the meeting everyone agreed that it would be in Joe's best interest to go to...Minnesota (anyone have any connections up there?). The University of Minnesota Cancer Center is internationally recognized for its work with umbilical cord transplants. The doctor we met with today and Joe's doctor in Pittsburgh will be working together to ensure Joe is able to get a transplant in Minnesota. It is true, going to Minnesota will take Joe and I way far out of our comfort zone. But hey, we've always wanted to see what Minnesota is like. Now's our big chance. Besides...I hear they have a pretty big mall up there. :) So that is the big news.
Now for some good news. First of all, Joe had lots of blood drawn and bone marrow biopsy #9 today to get the ball rolling on what's to come. Joe would like to appoint the doctor we met today his designated bone marrow biopsy person. Apparently this guy did an AMAZING job. Pretty impressive in light of Joe's recent Q and A! The other even better news is that Joe already has several good options for the cord blood transplant. So we don't need to worry about finding a match.
The not so good news is that Joe's bone marrow biopsy showed that his disease has progressed from MDS to AML M6. We're okay with this though. It isn't shocking news, and actually, it doesn't change Joe's treatment plan. If anything, the treatment plan is confirmed by this news.
As of now, Joe will be going into short stay for blood draws and possible transfusions through the weekend. Sometime very soon, as soon as this coming week, Joe will be started on chemotherapy - in Pittsburgh. Those lovely nurses T-7 will bee seeing us sooner than expected. The chemo will be an intense regimen that will hopefully bring Joe into some form of remission. I believe the regimen will be ten days. Recovery will be about a month. During this time, preparations will be made for Joe to get a transplant in Minnesota. The doctors are thinking that transplant will take place in 2-3 months.
Amazingly enough, after all he's been through, Joe seemed to have the most energy of all of us today. Not only that, but Joe made it through the day fever free! It seems he just needed to get out of the hospital for a bit. Being home has definitely been wonderful for Joe. You can bet he is taking full advantage of all the perks of home while he can.
We had a lot to absorb today, but a lot to be thankful for too. The doctor we met with in Cleveland was so kind and so helpful. We made it home before 5pm, and not long after that the doctor called and already had results for Joe. Yeah, Joe isn't being treated in Cleveland anymore, but we really felt that the doctor had Joe's best interest in mind. We are so grateful for that.
This evening, Joe and I were discussing this past year. Interestingly enough, the deeper we get into this craziness, the more apparent it is to us that God's hand is in all of this. It may not seem like it from the outside. But from where we are, it couldn't be more clear. That is pretty awesome.
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Thank you Auntie & Uncle Hwang for the card. It was so cute!
Thank you Baird family for the gift. Joe is really excited about it.
Thank you Eric W. for bringing us goodies, and for all of the photos! It was nice spending some time with you too.
9 comments:
Thank you for your updates...we are always thinking of you and your families. In our thoughts and prayers. (I hear Minnesota also has lots of nice lakes plus the nice big mall!)
Evonne, Thomas, and Leah
So, you two are Minnesota bound. I only live four hours south of the cities; once you have solidified plans to get out here, I will email you my contact info...just in case you might need something.
I am glad to hear that Joe will be getting the best treatment possible.
Always praying.
Neysa
Thank you for your detailed reports and how your faith encourages us all. One favorite song is "Above All" by Michael W Smith - good words and message.
My sister Nancy S. just passed the one year post transplant mark. We do understand the mix of emotions. My wife and I continue to pray for you and yours.
Kurt and Cathy
As far as I am concerned, this is the best looking Joe in pictures for a while- extremely handsome, sexy, intelligent, calm, confident,strong..........
Q
one of my best friends is about to move away from minneapolis, but i'm sure she'd be happy to share her favorite things about it--i'll email you her contact info. will be thinking about you both, as always. and thanks for the birthday wishes--was kind of a crazy work week and i didn't have a chance to respond, but i was grateful! :)
xoxox
lisa
i've got a very good friend from college in minneapolis. let me know what you'll need. praying for you.
-rtu
Having been to Minnesota half a dozen times, I can say that it is beautiful. Just take your winter jacket!! I'm amazed at your stregnth and outlook in this "adventure" and continue to hold you close in my heart and in prayer!!
XOXOXOXO
Oh my, what a lots of tests etc. and all in one day. I got tired just reading about your day. A "good" bone marrow biopsy....now that's an oxymoron! Shows what a little technique can do. There is good and then there is best. God is building your faith, and subsequently, ours through this experience. I believe that you two are a blessing to God. We can "see" Him near you..... "Draw near to Me and I will draw near to you". Still praying, gla
I'm really glad you met another good doctor for your team! I'm sad that the transplant wont happen in Cleveland. You were going to be my good excuse to go home, visit you, and catch a Browns game. But, on the other hand, I only want the best doctors and best hospital for my ex-best roommate! Love ya! Shelley
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