Today we met with Dr. Orchard and got a little more information about this engraftment issue. Again, he told us that since this "split study" has only been going on since last July they really don't have a lot of data yet. The hope is still that with the lowered CSA dose that the donor cells will increase. However, GVH is still a huge concern, as is her own cells rejecting the donor cells. The biggest thing that they are watching is her Enzyme level. She doesn't have to be 100% engrafted. They've seen cases that are only 10-20% that are producing adequate amounts of enzyme. Of course, the worst case scenario in all this is having to repeat transplant, if she doesn't produce Enzyme. So, we wait and take one day at a time. Grow cells, Grow.
We had an appointment with Dr. Braunlin today, Torie's cardiologist, to see if at least one of her blood pressure meds can be weaned off. After her exam, Dr. Braunlin was very pleased, and found nothing concerning. She wanted to get an Echocardiogram first, since Torie's last Echo was January 4. Dr. Braunlin was shocked to find that Torie has a pericardial effusion - fluid around heart. This can range from mild to severe, and Dr. Braunlin is calling Torie's "moderate". She hasn't been symptomatic at all with this, so hopefully it is resolving. However, they don't want her to undergo sedation with this, so her G-Tube surgery Wednesday has been cancelled. We have a repeat Echo scheduled for Friday. If the effusion is increasing, they may have to do surgery to remove the fluid. Two more steps backward.
Josiah is doing great! He is 100% engrafted, his counts are good, and he's eating! That's Our Strong Sweet Si! Our friend Joseph, and his parents are leaving in the morning to go home to New York. We are so happy for them. We will miss the here at the House, but we wish them the safest of travels. Danny is Day +11 and hanging tough, and Baby Sydney is still continuing to fight her way through. Mom and I are tired. Physically, emotionally, and mentally. It's so hard to watch Torie looking so good, running, eating, laughing - and find out these setbacks. But if these kids can do it, so can we! Your support and care and prayers help more than we can ever tell you, and we grateful. Please keep it up! Grow cells, grow! Vic-Torie!
Dearest Torie,
ReplyDeleteDon't let those Doctors get you down.. you are doing great!! You look wonderful and seem to have much energy and appetite. You have the great Physican on your side (Jesus Christ) and He will not let you down dear one. He has been our strenth and He can be your strength too. Tests can be wrong, Dr's can be wrong and things can improve and surprise the Dr.'s.. we have seen it before haven't we. It may seem like two steps backwards but who knows what the Lord has in store for you. My family and I are just next door and we are praying fervantly for you and your family...(as are many family and friends). We love you and are so very thankful that you are here with us for this journey. We are going to have to get your grandma's and my mom and dad to make sure our 6month check up are at the same time,then we can visit.. and play together... and eat together... and laugh at all the worry for nothing we did!! We can't see what is on the inside but God can and we pray for those Donor cells to grow,grow,grow and no GVHD!! Give your Grandma's a big smile for me so they know all is well dear friend.
Lots of hugs,
Josiah and family
Dear Grand Kid Torie, you have lots and lots of people on this Earth and beyond our Earth pulling for you. You are a sweet spirit and a sweet Angel. You have changed many lives, all for the better! You are in my thoughts constantly and you as well as your cousins are in my heart, always. Work on those good cells Grand Kid, the ones that were given to you. You and Josiah are little partners who have gone through and will continue to deal with 'life challenges'(as well as those who love you both). You know Torie, your Papa Tom doesn't know what's next in life, but Papa Tom really feels like you and little Josiah are going to be good friends for a long, long time!
ReplyDeleteI love you Grand Kid! Keep giving your Grands a giggle every now and then. You are one funny little ducky!
Papa Tom
it is spring time.....a time for growth so keep growing cells for our princess torie
ReplyDeleteLOVE the wake-up with torie
lots of love
kati
It's got to be frustrating when there are set-backs...hang in there!!! I am amazed and inspired listening to Torie's (and her grandma's!) story!
ReplyDeleteHang in there! Love you guys.
ReplyDeleteI love to read the blog cause I love to be updated but gosh it makes me tear up... :( I can't imagine what you guys are going through... We love you so much and think about you often.
ReplyDeleteHey there, just thinking about you and hoping that you are getting gorgeous spring weather. Torie, we hope your echo went well today. So many concerns, but we take those to Jesus who cares so much for you.
ReplyDeleteRylie wishes you could "come house, play?" Some day soon, we hope!