Monday, June 17, 2013

Chimera study biopsy results

Lots of things to report on Xander's Journey - he is Day +48 today!

In the peony garden prior to discharge
Xander was discharged on Thursday; this time I felt much better about the state of his health and was more confident that he would not have to return... but on Friday morning he was looking pretty bad. He had gotten swollen again and was overall feeling lethargic and tired. It was an early rise day for bloodwork and clinic and he hadn't gotten much sleep the night before. Come to find out, his counts had dropped and he needed platelets. In addition, he had ECP on Friday afternoon.  Aaron and Xan spent all day at the hospital on Friday, but didn't have to sleep there, he got to come home on more meds, Lasix and Potassium. We were to give him the lasix on Saturday morning. Well.. much to our surprise, Xander looked FANTASTIC on Saturday morning. It was obvious he did not need lasix today and he had enough output to quantify that clinically. He got to sleep in, eat a good breakfast and took a nap most of Saturday afternoon. He has been very exhausted, as you might imagine from everything he has been through and then of course, making new cells constantly that are still causing a heavy GVHD reaction.

Chimera Study
Dr. Connelly recently shared with us the results of of the chimera (multiple DNA) study done with the marrow, taken on Day +32. We are blessed with these results! We have all prayed and prayed that this graft would work, it looks like it has!

100% Donor Marrow - Xander is FULLY ENGRAFTED!
T-Cells are Donor too - this means that his immune system has started to grow with the new cells! 
Currently, Xander is in remission and does not have Myelodysplastic Syndrome

Super X, T-shirt gift from the Hay family

Being fully engrafted and generating T-Cells means that Xander's body is trying extra hard to "get along" right now. The GVHD has flared up over the past 2 days, so they increased his Prednisone back up to 40mg per day. That is a lot for a 32kg kid. It will start to come back down slowly again, but he does feel better in his stomach and his rash is browning with just the first dose. We will keep him getting the supportive therapies he needs to keep his bones strong during this fight.

Being fully engrafted means that he is not at risk for graft failure! Graft failure is what he had during his first transplant. So when the drugs suppress his counts, we are able to "rest easy" knowing that they will get better when he gets of the drugs and that it is only temporary.

As an outpatient, Xander is at the hospital at least 3 days per week. There are 2 clinic appointments per week right now and he is also there for ECP 2 days per week. We usually overlap one of the ECP days with clinic too. This is the way that Dr. Connelly monitors his progress and keeps abreast of his GVHD and recovery from transplant. Day +100 is the next goal, most notably, another bone marrow biopsy. This will confirm the state of his marrow and will test for MDS again. Post Day +100 we wait until April 30, 2014 for another biopsy with clinic and ECP along the way.

Xander has been enjoying food very much since he has been out. He still relies on us for almost 100% of his needs in regards to food, but day by day he is becoming more independent again. One of his friends recognized that we waited on him in the hospital and he ate in bed, peed in bed, played in bed, etc... Xander is so happy to be able to take care of himself, OUT OF BED, it is amazing how determined he is.

Z's sandwich - thanks to Alisse, Mark and Jessica

When Xander saw me waxing the kayaks this weekend, he got super excited. We had been looking out the hospital window over the last week fantasizing about getting out on the river. Well yesterday we did just that! Happy Father's Day to well, the BEST DAD EVER! This man has gone above and beyond what any person could fathom to get him through this transplant, he has put every ounce of brain and soul into getting our son healthy, you are an excellent man and I love you with all my heart.

Hobbes got to go too :)

Recently, my Dad's family got together to raise money for Xander. They put together a fundraiser and yard sale that brought in over $550! WOW - thank you for all of the hard work, love and positive energy that went into making the sales a huge success. It was great to see you all too :-)

We gathered to celebrate Father's Day with my Mother's side of the family. We all made "duct tape" hats of all different shapes and sizes to honor those men who are handy with tape (like my grandpa). Well apparently, there are some other handy duct tapers out there in the fam too! Here is Xander with Aaron's snake skin hat and his duct tape accessory sun hat.

I had to throw this extra one in of grandpa with my sister's completely HAND MADE DUCT TAPE TOP HAT. Folks, this took amazing skill!

May we be blessed with healthy days ahead.

Peace and Love to all of Xander's followers,



  1. We don't need to tell you how thrilled we are to see/hear the news. It was great seeing you a couple of days ago, too.


    Grandma Rhondi and Grandpa Howie

  2. Oh, what GREAT news!!! How wonderful for you all! *tearing up here*

    Hang in there, Xander! You're getting better all the time!!!!

    *doing a happy dance*

    -----Freda Fields Alley (friend of Bud & Mary Jackson)

  3. Day by day, right? We'll take win and run with it :)
    Love you guys, Lucy

  4. Yay! That's such great news!!!! Gabriel-Paulicks

  5. Wow! We're so happy about all of this!


    The Lowensteins

  6. My name is Jill Stodola and I'm recent LinkedIn friends with Diane Grimm. I want to tell you that I'm very moved by your story. My husband had 2 liver transplants in Oct, 2007. The second one brought GVHD. He fought the fight and dealt with this horrific disease. He is now gone. I have connected with a facebook group called: Graft Versus Host Disease. They are an international group of friends that are enduring GVHD. I strongly suggest you look them up for more support.
    Peace, love and comfort to you! Thank you for sharing your story, your light and the duct tape hats! Jill Stodola

    P.S. set up a fundraising mission with