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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Wednesday, June 29, 2011

Wednesday, June 29, 2011

Life has been busy with working, taking Emily to scans, and just the day to day life.  So, every night I think I will update Caringbridge tonight, and I fall asleep laying the girls down to bed.  I guess that means I am exhausted.

The past 2 weeks have been filled with getting Emily's scan post "induction" period.  Scanxiety has definitly played a role during this time and one where we are just ready to have all the results and move forward. Here is where we currently stand.  The MIBG didn't show anything where Emily's tumor bed was, which is great, however the part that I had a hard time with is learning that the 6 rounds of chemo hasn't touched the 4 sites on her iliac bones and her femur.  For me, I was hoping for NED and just hearing this, put a damper.  I did ask,so can it still spread?  The answer was "Yes!"  again not what I was expecting to hear.  The CT scan showed the the tumor was completed removed and it showed a collection of fluids around the kidney from where the tumor was removed.  The oncologist indicated this was normal and nothing to be concerned about. This week Emily has had her Bone Marrow Biopsy as well as the Bone Scan.  We have not heard anything back on the Bone Marrow which is the other one that concerns me.  I remember Dr. Bagatell from CHOP telling us don't be surprised if one shows Bone Marrow shows you clear  and the next one does not.   The Bone Scan from today from a pre-liminary stand point, looked clear, however we haven't gotten a definite fron the oncologist.  

So at this point, Emily is free from the hospital, clinic, in that vicinity after today for 2 weeks.   She had a clinic visit today as well to check her counts and everything is on the way up up.  So she is safe to head to Disney World. 

Tomorrow we have family coming in from Massachussetts, they come down every July 4th and we spend time with them.  We are looking forward to a calm relaxing weekend and spending some time with the family.  We are in search of a campground for the weekend though, I think we waited to long and now we are having a hard time trying to find a place for the weekend.   Hopefully we will find something to take the girls for the weekend and just enjoy some time away.  Wednesday morning the Love Limo will come to pick us up at home to take us to the airport and then we will head to the airport to be taken to Disney.  The kids are very excited and we are all looking forward to taking time away from "C" and just enjoying time together as a family!

Here are a few people that Doug and I have heavily on our minds and we hope that you will stop by and leave them lots of love and we sent you there! 
Meesha is such a sweet and kind girl, and so is her mom and dad.  We know them because they are local and Meesha also goes to VCU Health Systems where Emily goes. However last week they were away and were called to come back for some extra scans...please leave them some love and peace as they go through this time ... http://www.caringbridge.org/visit/meeshajoshua
Brooke, oh how she reminds me so much of Emily, in just how her mom writes about her and how she is.  Emily would really like to meet Brooke one day and Brooke would also like to meet Emily one day. Hopefully one day something can be worked out so that they girls can meet.  Jessica, her mom, is also a very sweet women, we talk through emails or what have you ... however right now they are going through a hard time ... they are very far from home, from dad while Brooke has to endure extra chemo at Sloan Ketterling in New York.  Please also stop by Brooke's page and leave her some thoughts and love during this time away from home.  http://www.caringbridge.org/visit/brookehester

We think about all the families that are having to endure this nasty mess and wish it could be taken away and never be seen again, but its a reality of one that we all have to face and hope that it will go away and never come back.  Its been a hard reality for us to face.  We sat in the clinic with Emily the other day when she was having to do a bone marrow and all we could think about was "Why are we here?" "is this real?"  At times it feels like this should be a nightmare, because really it should be, but then you wake up or a doctor walks in or reality faces that this is all real.  

Please send lots of thoughts Emily's way that the Bone Marrow is clear and that we will be moving forward to Stem cell Transplant come July 18th now. 

Thank you again for everyones love, prayers, and thoughts, they mean so much.  Our family in Massachussetts held a benefit for Emily on Sunday and it was great success, we were able to watch what was going on at the restaurant and somewhat be with them, although we couldn't actually be there with them (there isn't a hospital real close to them in case we should need one) At the end, they called and we were able to watch them as they said a prayer for Emily and us.  It brought tears to both Doug and my faces.  It was really a very special moment and we can't think you all enough for just thinking of sweet Emily during the time and doing something so amazing for our family.  It means so much!!!

Thank you again to everyone.  Love and kiss your kids and hold them tight!

Also please be sure that you guys are following Emily's Facebook Page, I tend to update tid bits of information there when I can do it quickly to let people know how things are going or whats going on when I can't update caringbridge so quickly!!

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