Stable Scans & Sibling Star Day = One Happy Family!!



Morgan's artwork was framed and hung up in the sedation area of St. Jude!  In case you couldn't make it out, Morgan's masterpiece is a picture of her and I, along with our hand prints! :)

 

Sibling Star Day!!

Western theme



It has certainly been tough for Hunter to deal with everything that has been going on but she is doing a great job and we are so very proud of her!!!  She had so much fun at Siblings Star Day and she deserved every bit of it!!



 

 

 

STABLE!!!!  Morgan's health at this point in her diagnosis is nothing short of a miracle!!  I think all of your prayers and thoughts are being heard because Morgan is among less than 10% of kids with DIPG to be doing this well at this stage and we are just so very thankful!  We have, for some reason, been given this gift of time, however long that may be, and we are enjoying every minute we have with her!  At this point, no one knows how much extra time she has, it may only mean months but it could also be years, there is no way to know.  They tell us that we should try to live life more "normal" but, we kinda forgot, what is "normal"?  We really can't seem to remember life before Morgan's diagnosis.  The words cancer and brain tumor are used so often in our house that Hunter and Morgan pretend their baby dolls have brain tumors and they take them to St. Jude to get treatment.  That is just so not "normal" but, then again, it's "normal" for us; one of those parenting moments where you don't know whether to laugh or cry.  Morgan has 3 more rounds of her clinical drug and she will officially be at the 2 year mark where, technically, the study ends and she is supposed to stop taking the drug.  There is something called "compassionate use" where they will possibly let her continue to take the drug but the question remains...is it doing anything??  Every other child that we have met at St. Jude with DIPG that was on the same drug has since passed?  Is the drug somehow working on Morgan or is it that Morgan has just been so atypical from the beginning?  We have a lot to think about before our next visit in September! 

 

 

As you can see, Hunter participated in St. Jude's annual Siblings Star Day and had a blast!  Siblings Day is a day to honor all the siblings of St. Jude patients by letting them know just how truly special they are.  The child life specialists did a great job!!