Scans Update

Scans are completed and Emily is stable. We are happy there is no progression but would love to have heard something different but it's stable. Some spots are decreased from Sholler's view but all of her spots are still there.

It was a long day at the hospital and we got back in around 6. The best of this all is Emily looks wonderful. She is 33 pounds and she has lots of hair. We move forward.

We start the long drive home tomorrow taking a break tomorrow night and will be home Saturday sometime.

We come home to start Round 5 of the Avastin trial. Doing two more rounds and then back to Michigan for scans. Depending on how things look after round 6, we may put Emily back on the DFMO trial. At least that is what Dr Sholler suggests. We are always looking.

Just a quick update. Hug and kiss your kids and tell them how much you love them.

Michigan Week

It's that time again...but first I must apologize for the lack of updates on Emily. I also want to apologize upfront for typos, traveling and iPad, easy for that to happen. This will be a short update, but a quick update of where we are.

Emily finished round 4 of the Avastin Trial last week. This round came with quite a few unexplained off and on fevers, unexplained bouts of throwing up, low glucose with high WBC and ANC, then dropping low and needing platelets to almost needing blood. She finished off the round though, and now we are here...

It's been a long two days of traveling and later tonight we will have made our destination. It will be another late night!!!! Tomorrow Emily has clinic with port accessing and count checks and then her MIBG injection. Thursday she has her MIBG/CT scan and then afterwards we meet with Dr. Sholler for results. Needless to say, dad and I are feeling "scanxiety". Obviously we are hoping to come out from scans with less disease or even stable.

I am going to end this, but I want to say thank you to everyone who continues to follow us in this journey, pray for our family and most of all Emily. Thank you for your love, donations and support. Your emails, messages, words are each read and much appreciated. If you have your "Team Emily" gear, we ask that you wear them either tomorrow of Thursday and share your pictures by tagging us on Facebook.

Round 4 of Avastin Trial

Tomorrow Emily is scheduled to start Round 4 of the Avastin Trial that she has been on.  She has clinic to check counts to make sure she is good to start, and if she is good to start, she will get pre-meds and then the Avastin that runs over hour and half. She continues to mostly eat pretty well, play and run around and just have a good time. 

We really have been enjoying home together as a family and enjoying one another.  Dad and I even have date night Saturday evening and enjoyed having time with one another while my mom stayed with the girls.

Last weekend, we had a weird day where Emily was throwing up, but there was no explanation as to what was causing it or why it was happening.  This past weekend, Emily wasn't eating much Saturday and Saturday night she was running low grade fevers and then over night she had some pretty high fevers.  Sunday low grade fevers and if she had any more high fevers, we were going to take her to the ER.  Thankfully she didn't, but again all of this happening with no explanation as to why. She also complained of her toes hurting, knees hurting and her head. All of which throws her dad and I to worry.  Its just a reality for us...to worry, to think and then worry some more, we worry about the little things. Even when things are good and she is happy and running around, we still worry.  We can't help it. Its the reality we live in... Why is she getting sick?  Why is she having fevers?  Is something happening in her body that we can't see?  However we take the days when she is feeling up and enjoy and play and have fun, we will never allow the worry to take us down.

I don't update often, because we often have these thoughts in our minds and they are hard to just not think about.  I try to update when big milestones are coming up or are happening so people who don't follow facebook, know what is going on.

Today we emailed the doctors and nurses in Michigan to let them know Emily is starting Round 4 tomorrow and to go ahead and schedule scans after day 15, which will be April 30th. We also explained about what had been happening and that while we hope it is all just normal things, we still worry.  The nurse replied and said Emily was slated to come for scans May 20th, which will delay Round 5 starting should everything be ok to move forward.  I explained that and she emailed back that Dr. Sholler moved some things around so that we could come for scans during the week of May 6th.  So now we just wait for emails with the times and actual dates during that week.  We are thankful that Dr Sholler understands that us families worry when unexplained things happen as they have and that we worry it could mean the worse.

Emily overall besides the unexplained things happening, has been doing great.  Honestly she has been doing awesome, always has the great smile. She is enjoying camping with Dad and I and family, has been doing really well with the Homebound teacher and just enjoying time with family and close friends.  Dad and I have noticed Emily has gotten very clingy to us, but it really is just Emily's nature! She is gaining weight and doing awesome.  We are proud of the fight that she continues to fight on a daily basis and the smile that she always carries and the love that she has for her family.  

We do ask that you think about the families who lost loved ones or were hurt in Boston.  Its a shame that we live in a world that we have to worry about these things happening, but something I have learned when bad things happen like this, there are some people in this world that you are so happy to have met and have such great people in your life.

Hug your little ones and tell them how much you love them

Round 3 Started

Updating...copying from Facebook to update those who don't have facebook....

March 18th...Emily's platelets needed to be at least 30 to start. Got a bit nervous because she had a little nosebleed. They were 29, Dr Gowda approved her to start, but that Emily will have to start coming twice a week to check counts. Premeds are done and Avastin just started about 10 minutes ago and this takes hour and half then fluids behind, so almost 2 hours...another long day!

March 21st...Emily had clinic today and today started Day 1 of chemo of irenotecan and temodar. 

March 22nd...Clinic went well yesterday! Daddy and Emily were not there that long since she didn't need a platelet transfusion. However her platelets are still low, so we are constantly telling her to be careful bc of her platelets! Yesterday started the 1st day of chemo on day 4 for this round. Emily is a just a bit more clingy and emotional we noticed quite a bit last night! Chemo will go through Monday! Just a quick update!

March 24th...Today was day 4 of chemo and it started off pretty rough... Emily just wasn't feeling herself and not feeling well. She said her tummy was upset. After she laid down mid day for a little while she felt better. Tomorrow is last day of chemo and she will go back Wednesday to check her counts!

TEAM EMILY gear on sale!! Tees and hoodies. Adult and kid sizes.
Tees 15$ + 6 if you need it shipped
Hoodies 22$ + 6 if you need it shipped
(Xxl +2$)
PayPal fulltothetop4@verizon.net
Put order info in memo box- include address!
Local orders will be delivered to Wholesale Guitars aka Steve Bryant as well as delivered by Amy Gordy
ALL proceeds go to help Emily with medical needs and travel needs!!!!
Order window closes 3/30

Chemo Delayed Again

Emily was so thankful to have her BFF, Lilly, camping with her this past weekend. The two together are so good together and they had a lot of fun. However, Emily had nose bleeds (that we were able to control) all weekend, and bruising on her legs, so we knew come Monday that she wouldn't make counts.

Come Monday, took Emily to the clinic and she started to get petechia on her chest, so I knew her platelets were low...after waiting a while counts came back and her platelets were 14... 14 meaning can't start round 3 with Day 1 of Avastin and on day 4 chemo. 14 meaning she needed a transfusion. After a long day in the clinic, Emily received platelets after the premeds and we headed home. We were scheduled to come Thursday for counts and to meet with Dr Gowda for plans.

Clinic was quick today, which was great... Emily had her counts checked and while we waited, we met with Dr Gowda. Platelets are becoming an issue because it will become linger and longer between each round that we may wait longer to have her platelets recover on their own. We knew that the Avastin could do this, however with the last round, we are finally seeing some improvement and with that we want to move forward. But platelets may not allow us to move forward, because they need to be at least 35 to start. Dr Gowda went over a trial for resistant neuroblastoma for patients whose platelets aren't recovering and are needing their stem cells. We are not sure that we are interested in this at this time just to receive her stem cells, but we will look it over and also send it to Dr Sholler and get her take on it. This trial consists of 5 different Chemos and "It was designed to maximize cytoreduction via high dosing of synergistically interacting agents, while minimizing morbidity in patients with resistant neuroblastoma (NB) and ineligible for clinical trials due to myelosuppression from previous therapy." While at this point we don't want to give Emily 5 different Chemos, but we also at weighing options to make sure that Emily can continue with this trial.

Today's platelets were 42, which we know most of those platelets are from the transfusion, so we don't know how much they are recovering on their own. Dr Gowda gave us the opportunity to start the next round if we wanted too, but that he recommended we waited until Monday. As long as Monday they are 30 and above, he will allow her to start the next round, knowing that this next round is going to drop them even more. So, Monday I will take Emily back into clinic and hope that her platelets have maintained to recovery on their own. If they are 30 and above, she will get day 1 of Avastin running over the hour and half along with premeds before hand, and the. Day 4 starting the two oral Chemos at home. We did make the decision today that after the chemo that we would not like Emily to get the GCSF (Neupagen shot) that she received the last two rounds because there has been a study down that the growth hormones in the shot may cause progression.

The fear is allowing to much time in between each round and allowing neuroblastoma to take over. Neuroblastoma is once again making dad and I make decisions that are hard to make, and we know that we need to figure out something to help her platelets. We are still figuring out when we will be back in Michigan for scans to see how things are looking, but at this point we still need to get this next round started.

Please send your love and thoughts that the 3rd round will start Monday. Make sure you hug and kiss your kids and tell them how much you love them.

Didn't make Counts, Chemo on Hold...

Snowy drive in (yes I was stopped)

Wednesday Emily had clinic to check her counts and the expectation was to start Round 3 of the IV Avastin and home oral chemo of irenotecan and temador.

630AM, my phone rang to the County Schools saying school was closed because the snowy weather was moving in faster than what expected (when the night before we were not supposed to get anything). I looked outside and it was pouring down raining. Left around 9 once Daddy got home from work and it looked like it had been snowing for a while. It was a long trek into the clinic, but we made it safely.

It was busy in the clinic, so Emily was accessed and we waited back in the waiting room until a room became available. Emily's nurse came out after a while and said Emily doesn't make countys, her platelets are 21 and need to be 35 to start the next round. I certainly wasn't expecting to hear that.

The waiting game, for platelets to recover, makes me nervous. Nervous to wait, nervous that we are letting NB come back in, when this seems to be working.

After talking with the nurse practioner, Dr. Gowda feels confident with this regimen that Emily is on, and that he doesn't want her to move forward without the Avastin. That is great to hear from him... The avastin goes in and attacks the tumor cells that are in Emily's body and then the chemo that comes after attacks the remaining ones. Emily still has such a long way to go, and many tumors in her bones that we want the Avastin and chemo to take care of.

Plan is to wait until Monday, and bring Emily back in and have her counts checked. We are having her eat plenty of greens, and trying anything we can to get her counts back up to where they are supposed to be so that we can start the next round.

While we are nervous about the wait, at the same token it is nice that Emily has a little bit of a break and this weekend we are taking the girls camping and going to meet with Navid who started Projekt 3000. We look forward to meeting with him. Emily is even more excited because her best friend, Lilly from school is coming with her sister who is also friends with Jessie. So, they are all excited and we are excited about seeing them happy. Emily really deserves this and we are thankful to their parents, good friends, who are letting them come along with us.

Please send your love, hugs and thoughts to Danny Nardi's family whom Danny lost his fight to neuroblastoma and AML. Danny and family, we are thinking of your during this unimaginable time. While we never met, I know we have seen Danny's name on the door in Michigan while we have been there! Thinking of you! http://www.caringbridge.org/visit/dannynardi

Please make sure you hug and kiss your kids and tell them how much you love them. The most wonderful thing is hearing your kids telling you that they love you out of no where. Have a good weekend!

Scans Complete with Update

Emily waiting in the clinic today

We have had a busy two weeks, so sorry for the lack of updates.  I try to keep facebook updated as much as possible.  Last weekend, a fundraiser was put on for our family for travel, medical expenses and Emily's chemo by Steve from Wholesale Guitars and it was an amazing night. Emily originally didn't want to go and the only way we could get her out the door is to let her wear her night clothes. (she lives in them).  Once we got there, she didn't want to leave, her best friend, Lilly, from school was there and they have such a bond and a true friendship that is so great to see at such a young age.  Everyone had so much fun, Jessie and Brianna did and it was such a great night. Steve thank you for all of your hard work for the fundraiser, it was an amazing night.  Thank you to Amy for getting the shirts made and tank you to all of the bands and especially to Hali Hicks and her husband Trey Cordle.  Emily didn't want to leave until she saw them play! Thank you for everyone's hard work and a wonderful night and thank you to the friends and family and people that we didn't know who come to support Emily and our family!  THANK YOU!!!!

We are on the road traveling en route back to Virginia, so if I have spelling anything incorrectly, I apologize in advance.  Probably won't be home until tomorrow sometime, but we are en route.  Its a long drive, but even longer for the kids with long periods in the van.

We left Sunday afternoon heading toward Michigan and arrived late Monday night. Emily had clinic Tuesday morning with counts and injection.  All of her counts remain ok, with platelets at 29.  They wanted her to have her counts checked again on Wednesday before scans just to see if she was maintaining her own platelets.  Anxiety for this scan has been pretty intense, mainly just because we changed up the treatment from the DFMO to the chemo on our own from research. Emily's counts still remained ok, but her platelets dropped to 19, so she needed platelets.  She ended up having a weird reaction to the platelets of coughing like crazy, but once they stopped them and the coughing subsided, they started them back up again, just slower. This definitely helped just took so much longer, so we had a long day in the clinic. Long days have been a normally lately, but the positive from that is that we aren't spending as much time in the hospital.and mainly only one day a week.

Today we met with Dr. Sholler about the results.  We waited and watched many nurses and doctors walk by our room, and each time we heard footsteps, anxiety was building. We feared the wait meant the worse, we feared the room we were in, meant the worse, we feared it all. Finally after waiting about an hour, Dr. Sholler came in and said "Things look better!" Sign of relief and thankfully she didn't make us wait to go over things..  She showed us the scans and things definitely look better. She has two spots that have mild uptake, we originally thought it was one, but after review, it was two, and two spots on her spine are resolved and all of her other spots are mildly decreasing. This is great news, 

Thank you to everyone who for the past two days and days before have shown their support by sporting the Emily gear and leaving their love and support on Emily's page.  It means so much, and it helped. The last two rounds of chemo and Avastin have helped along with the homeopathic things that we are doing at home and only organic. 

Dr Sholler recommended with the positive results of the scans, to do two more rounds of the same chemo and Avastin, except that instead of doing 21 day cycle for the round, make it 28 days.  Both Dr. Gowda and Dr. Sholler are both agreeing with this because of her platelets and hopefully this will give them more time to recover. We too are ok with this and will start looking into some other homeopathic stuff to add into the mix here. After the 2 rounds we will go back for scans and see how things look.  The 28 day cycle should also give some more free time in the mix as well, so we are definitely ok with proceeding.  The hope is still for CR (Complete Remission) and putting her back on the DFMO to either keep her in Complete Remission or at least stable (partial remission).  

Thank you for continued love and support and sending all of your thoughts, because they means so much and we are so hopeful to still get Emily into remission and this nasty disease gone and out of her. She is ready for treatment to be done, but she is handling this so well and we are so proud of her.

Alright the kids are calling in the backseat, so that is my que. Remember to hug and kiss your kids and tell them you love them everyday!