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, December 24, 2014

4 Year Anniversary

Today marks 4 years since our journey with Emily's diagnosis of Stage IV Neuroblastoma. December 23, 2010, 4 years ago, our little girl started a fight with cancer. Its hard to believe that she has been fighting this disease non stop for four years, but she has. While we would like to have a anniversary date for an end of treatment, for NED (no evidence of disease) for so many years, it is just not part of our anniversaries dates as of yet for Emily, but we will continue to hold hope that we will one day have them.   While we certainly wouldn't want to hear anyone say Happy Anniversary, what we want to say is we are so happy that Emily one amazing girl and making such huge difference in this world. She always amazes us. after everything she has been thru, and continues to deal with, she still walks through those hospital doors or into any situation for that matter, with that infectious smile. Her passion in life is was most of us take for granted. This was never a group that we wanted to be a part of, but we are, and along the four years of holding Emily's hand while she continues to fight with a smile, we have learned so much along the way.  We have met some really good people who continue to stand by our side while Emily fights and through her journey we have learned so much about family and friends.

Doug and I still remember like it was yesterday the day we took Emily to the hospital and when we were told that they found a tumor in our daughter's body. The ambulance ride to Children's Hospital of Richmond with Doug following behind Emily and I, and the extended stay inpatient during Christmas while trying to determine what Emily was diagnosed with.  All we wanted to do was to take our daughter home and be able to celebrate Christmas with our girls at our home.  Doug and I still remember being told by someone in the hospital that this gets easier with time,  and we have found that this doesn't get easier with time, the only thing we have found is a "new normal" that continues to change constantly as you go through the different treatments with your child, you just learn to deal with and make the best of it.

Like I said, over the past four years we have learned so much, not just about cancer, but about family and the importance of family,friends and community. Having honest and loyal family, friends and community a part of our journey, makes the journey with Emily so much easier.  The past 4 years has been hard on Doug and I, and most of these years have done them alone taking care of our girls while Emily fights for her life, but we have done it together. We continue to do it and make things work, even though we wish it would have been and continue to be different..  So many friends and family have walked in and out of our lives, because either our situation is just too much for them to handle, or just not something that they want to be a part of, just please remember while we do have so much going on in our lives taking care of Emily,  that doesn't mean that you can't talk to us and tell us things because you think it might be too much for us to handle, because it is not.  Remember we are normal people too who just like the rest of you want to be part of a "normal life".  Today we just want to enjoy the love of family and being with family and watching our girls smile, laugh and play. and feel that love that surrounds them from family that loves them. 

While this 4 year anniversary, we wish we could say that Emily is NED, we want this 4 year anniversary to be one that we are happy that Emily is thriving in life and doing so well going to school and running around and enjoying spending time with her sisters and her dad and I. We look at our little girl every day and we are so happy that every day we can celebrate another day with her and watch her sleep, that we can hear her talk and make jokes and talk about her friends.   Emily is a mommy and daddy's girl and to watch the love that she has for her parents, and her family would make one's heart melt.  We love hearing our daughter talk about all the good things that she wants to do, she has a heart of gold and a smile that you would never forget. 

Although right now, Emily's treatment plan, there isn't much to update in that part of her life. She is doing very well, loves going to Crenshaw Elementary School & loves being part of every event & function. So even though you don't hear from us to much lately, these updates are still hard because that means every time we sit down to write that means that Emily's Journey for the past four years is true and a journey that we never imagined we would be a part of. We are so happy that Emily is doing well, we always try to maintain a positive approach to every situation we walk into but we are not naive to the fact that this could change in any moment.  We know that the "new normal" that we live today could be ripped out from under our feet, everything could change and Emily could be spending a lot of time back in the hospital again. We don't and never have taken any of this for granted, every Birthday, every hug, every "I love You", every single moment!! 

Thank you to all of our friends, family and community who continue to stand behind our journey with Emily and hold our hands and be here with us as we continue to watch Emily inpsire.  Without all of you, we couldn't be where we are today so we thank you so much for all of the love, compassion and thoughtfulness each of you continue to share with us, it means so much. Thank you for the past 4 years and we thank you for continuing to be with us.

Thursday, December 4, 2014

Stable Scans

Once again scans are stable!  Two of Emily's spots have an increase of uptake and one of the spots is gone. Dr Sholler again offered if we wanted to do the other DFMO trial with chemo we could, however we decided to keep Emily on the Conpassionate Use of DFMO trial she is currently on. There are no new spots and none of her spots are bigger, so we will take stable!

While we continue to long for NED and to hear those three words No Evidence of Disease that so many other families hear , we are happy that Emily continues to thrive! She has been complaining of back pain when she bends over, but we are not seeing anything to accompany that pain. Emily can go to school and have friends and enjoy things, so we are happy with that. She wants to be done with treatment and we too long for her to be done with treatment! 12/23 marks 4 continuous years of treatment with no stops and she deserves to have this one day! We had hoped we were going to hear those three words though because we wanted to have a huge party to celebrate all that she has been through!! One day we will hear those words, but for now we will continue to hold her hand and fight with her!

She heard her friend Molly, that we had lunch with, was done with treatment and that she was NED for 34 months. She said she wished she was done with treatment like her but that she was so happy for her and that she deserves
 it. Emily always amazes us with how strong she is and how she is happy for her other friends!

So for now Emily will continue on the DFMO trial and we will come back to Michigan for scans in late February or early March! Dr Sholler is happy with how she is doing so we wll continue on. 

Please continue to keep Emily in your thoughts. Also remember that we are still collecting bandaids until December 15th, so send them on!! I don't think we are going to make the 5000 boxes this year but we are happy with how many people have helped and continue to do so!

Remember to hug and kiss your kids and tell them how much you love them!!

Wednesday, December 3, 2014

Long Day

Today was a long day at hospital...Emily had clinic for accessing her port and checking counts. Her counts came back and they are starting to come back up so it tells us she was fighting something about a week ago.   We should get results tomorrow of urine markers!

In between clinic and injection we met up with another neuroblastoma fighter , Molly and her mom Trisha and Dawn whose son lost his fight with neuroblastoma, superbub! It was great seeing you guys today!! Then we had injection and had lunch with Molly!  Emily also had her hearing test! Hearing test shows no significant change which we are very happy to hear! She is only a few decibels down from where she was last time so if we want to go the route of using an FM system we could do that if she needs more help at school. 

Tomorrow Emily goes back to clinic at 12pm to get accessed again and then she has her MIBG/CT scan at 1pm! We thought we would have to wait till Friday to get results but Dr Sholler will be able to get them so we meet in the clinic around 3pm!! It will probably take longer to get them but we will see!

ScAnxiety is definitely here so please wear your Emily Gear in support of Emily and send your love and thoughts!

Tuesday, December 2, 2014

Michigan Bound

We all had a wonderful Thanksgiving.  This holiday we were able to spend time with Doug's family in Massachusetts, which we haven't been able to do in quite some time.  Emily loves spending time in Massachusetts. 

Its the little things in life that we are realize are big things.  Spending time with family who loves to spend time with us.  We got to spend the weekend with Doug's sister Tricia and she made Thanksgiving and had Doug's dad over.  It was wonderful to see the rest of the family and enjoy spending some time together.  Best of all, it was spending time with family that meant the most, again its the little things, but you realize family is such a big thing in life. We thank all of our family in Massachusetts and love and miss you guys already.

Emily continues to do well.  We did get an email from Dr Gowda before Thanksgiving last week to let us know that Emily's vitamin D levels are low and to start her on a supplement during the winter.  So we did start her on that over the weekend.  Hope we will see her numbers starting to come up when they are checked in Michigan tomorrow. 

Yesterday we had our first leg of our trip to Michigan and stayed with our good friends in Pittsburgh, PA. Again thankful for the little things that we have such wonderful friends to give us a warm place to stay, warm dinner to eat when we arrive and a place to sleep for the night to rest up for the rest of 2nd leg of our trip.  Thank you guys so much for being such wonderful friends.  Last night the girls also celebrated Christmas with them since we won't see them around Christmas time and the girls enjoyed opening gifts. 

Today we are on our way to Michigan, and we have about 157 miles left of our trip.  We were going to bring the camper like we normally do, however Doug's truck was acting funny and with the weather we felt it was safer to just bring the van.  Because we were late in getting some place to stay, we ended up having to get a hotel close by. So we should be arriving around dinner time to the hotel for the night as long as traffic isn't bad.  We are thankful to those who helped with sending gas gift cards, it really means a lot. You can also donate through Emily's blog if you wanted to help while we are here.  Again thank you to all of the support, it really means a lot to us.

Tomorrow Emily has clinic to get accessed and check counts and then she has MIBG Injection and then she gets her hearing checked.  We haven't had her hearing checked in quite sometime and we know her hearing has suffered a bit more. We are hoping that her counts are coming back up from where they were down from about a week ago. Tomorrow night there is a "Frozen" party for all the kids from Helen DeVos clinic.  Its a play put on by all the nurses from the clinic, so it should be a good time for the kids. 

Emily's scan is on Thursday at 1 pm, so our scanxiety is building up for scans. If you have your Emily gear, please wear it to support Emily and our family as we go through scans.  Scans are about a hour and a half.  Because they are later in the afternoon we are not sure if it will put us meeting with Dr. Sholler on Friday morning or not.  We are waiting to see with that.  PET scans and bone marrows will be scheduled if there is any progression.  We are hopeful for stable and more specifically better than stable.   We know Emily looks great, but we also know Neuroblastoma is a monster and can happen at anytime and we want this monster gone from her body.  She deserves.  We remain hopeful to hear that one day she is NED and if we ever hear those words, we can promise you there will be a BIG NED party for her. 

We will update more tomorrow after the day, but please keep Emily in your thoughts and remember to hug and kiss your kids and tell them how much you love them.