Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Showing posts with label Christmas. Show all posts
Showing posts with label Christmas. Show all posts

Tuesday, December 25, 2012

Merry Christmas

Merry Christmas to everyone from Emily and the rest of the family!

Thank you to everyone who made this Christmas such a huge success! Thank you to Steve Bryant from Wholesale Guitars and Iron Eagle Riders along with Amy Kern Gordy and Sherri Jimenez, Packages of Hope, The Blanket Fairy, Sue and Jojo, Ed and Vickie and all of the other amazing people out their who made these girls Christmas such a huge success and a very Merry Christmas!

Thank you


Saturday, December 31, 2011

Happy New Year

2011 has proved to be a year that we don't ever want to repeat, however we have grown so much in this past year. We learned more in one year than we have ever learned all together. We learned who our true friends and family were and are and those that left our side. But most of all we watched our daughter go through complete torture and smile through it all. Emily is our hero and she is so strong. Emily we love you so much! But most of all, for the year of 2011, we learned... "You never know how strong you are until being strong is the only choice you have."

This past week a family that we met while in Philadelphia that also lives in Virginia whose daughter has Neuroblastoma, The Kudro's, Hayley lost her fight to neuroblastoma. Karen and Eric, Doug and I just want you to know you are amazing parents and Hayley is a beautiful little girl. All we remember is the night we drove to the RMH and you two were waiting outside for us and she was waving her hands all over and just so excited. We are sending lots of love and prayers to you!

This year was also one of the hardest year that we have ever had. December 18th marked one year since this journey began and December 23rd marked one year since we learned that our daughter, Emily, has (that dreaded word) cancer, neuroblastoma to be exact. A cancer that is hard to beat. The loss of Hayley was a lot harder on us than we ever imagined, because it just feels so close to home. But we also know that Hayley is no longer in pain and for that we are grateful.! This past year has been a journey that Doug and I have learned to do many things on our own because there hasn't been much help, learned to cope with something that I never thought we would have to deal with and continue to move forward with the rest of our family while working.

While I don't want to bring a sad post tonight, I just want to say we are thankful that we were all home together as a family for Christmas Eve and Christmas Day and here we are, its New Years Eve and we are all home together again. For that we are very thankful!

Right now we head back to CHOP on January 9th for an MIBG on the 10th and results on the 11th. The results we are hopeful that they are showing improvement and if they are, then we move forward and will be placed inpatient to start Round 2 of MIBG Therapy. If the scans do no show improvement, they have some other thoughts for us. Scanxiety is surely in our minds, but we are remaining positive that there is improvement.. Emily has had 7 platelets transfusions since we have been home and 2 blood transfusions. For the first time, Thursday, Emily did not need to have a platelet transfusion and we are hopeful that they are coming up and staying up on their own. Emily has clinic Monday morning, so we will see how things are.

As the year comes to a close, and we start 2012, we are looking for a much brighter, happier and healthy with CLEAN scans!

Happy New Years to all!

(I also wanted to post Coles Pages, with Emily's page... http://www.colespages.org/EmilysJourney/pages/visit and you can actually purchase stuff with Emily on it. Check it out!)

Saturday, December 17, 2011

Week 2 & 3 (Post MIBG Therapy) Update


Sorry I haven't updated in a while, but when things are "almost normal" you really almost forget.  So I have been updating  Facebook just to keep everyone one to date. See below for the last two updates

Dec 10th: Week 2 post MIBG therapy! Emily is feeling better and eating better! She needed platelets again on friday and her ANC is dropping! We are hopeful that it will come back up and she won't need the neulasta shot, but we will have to see! Last night we took girls to Christmas program where Emily was going to school! She enjoyed seeing her friends!

Dec 17th: Week 3 Post MIBG therapy, Emily has had a pretty good week, she is eating well also gained a pound (YAY) and seems to have energy. Her counts are steadily dropping, there is a trend of them steadily dropping. Platelets were low (21) Tuesday, but they wanted to hold off to see if they would come back up, Friday platelets were 7, so she received a transfusion. Emily's hemoglobin also dropped Friday, so she will get a transfusion on Monday. Being that we are only a week from Christmas, we are being careful not to get Emily around a lot of germs and land ourselves in the hospital. So far so good though!! Send Emily lots of love and she is loving all the Christmas cards, so thank you so much!! Have a great weekend.

Please also send out a lot of love, thoughts and prayers for some other families fighting NB right now that could use some love right now: Ethan Hallmark , Hayley Kudro andJoshua Johnson!!

Tomorrow night marks a start to our journey (its been a year) and December 23rd marks the day we learned that Emily had Neuroblastoma.