There is still not much news to report other than we are all together again. Yeah! It’s been so great to all be together and not across the country from one another. Bradley seemed so much bigger to me just from being apart this past month. He is a crack up – Andrew and I love the way he says “Boston,” it’s cute. And Gabrielle is just so fun – it’s good for Jared to have them around. Jared is doing well . . . . everyone is very hopeful about what has happened since Jared has been on Rapamycin. Jared still has some bad days but all in all we feel confident that this drug has really helped. Jared was declining so quick when we first arrived, we know if this medicine was not helping, then things would be very different right now. Jared’s post Rapamycin imaging will be done Thursday. He will have a CT scan and then depending on what the findings are an MRI the following day. The big question is: Is this drug, Rapamycin, shrinking the tumor or just stabilizing the tumor? Do we proceed with radiation right now, or do we wait for a couple of months in case the tumor really could shrink more? Andrew and I have so many questions and I think to be honest so do the doctors. Jared is the first to be on this drug for a chordoma tumor. So . . . when we get some imaging done then we can discuss more about what the plan of attack will be at that point.
Until then we are just trying not to come down with hotelitis (I think I've got a small case of it already). I’m ready to have more of a “home” setting. If all goes as planned then Tuesday will be moving day into our apartment, across the street from the hospital, and we are looking forward to it!
We will post at the end of the week with the latest plan. We just hope and pray for the doctors who are making these decisions to be able to make the best decision for Jared and his tumor since it is so rare and Jared is the first, to be on this new medication. Apparently, with Jared’s success they are treating a little boy from Argentina with the same medicine. We feel so grateful to be here in Boston receiving the care we have. The future looks so hopeful - it's exciting and we feel so blessed.
Great shirts and neat hats you Boston hotel residents. Great picture and so much hope and continued prayers are coming your way. It is always so fun to see and feel all the positive sentiments that we feel each and every time we see your precious pictures and words of comfort.Thanks for this update. We are so encouraged and hopeful. We love you, Grandma and Grandpa Beck.
ReplyDeleteI love seeing all your kids together, Great Boston outfits!
ReplyDeleteThanks for the update, We are all praying and hoping it will be good news this week. And for the decisions that need to be made, may the spirit guide everyone involved. Love you tons.
Love the picture & I couldn't agree with you more regarding Bradley. He has just really come into his own & had my kids laughing non-stop. You have a beautiful family!
ReplyDeleteWe are praying for a good report at the end of the week. We love you all & sure do miss you!
I hope that all goes well. I am so glad that you can be together. We are praying for you and your family and we put your names in the temple. Good luck!
ReplyDeleteWe love you guys and hope and pray for the best. Sincerely - Mark and Rosy Lee family
ReplyDeleteI am glad you are all together again! I love the Boston shirts and hats too! So cute! Our thoughts and prayers continue for your family. Thanks for keeping us updated!
ReplyDeleteI'm sure your other kiddos were thrilled to see each other....and what a crazy position to be in. Bless Jared's sweet heart!! What a trooper! All our love and prayers.
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