Update of Week

Its been a long week, of which last weekend I broke my ankle, so it has made the week even seem longer.  Emily is doing well, her WBC and ANC have been great this week, however, her platelets and hemoglobin have been a little on the low side.  Not low enough to cause for transfusions, but also not enough to start chemo (her 3rd round) yet.   She will go back Monday morning to have counts checked and see where things are.  She was last checked on Thursday and her hemoglobin had dropped a bit so it could be a possibility she may need a transfusion Monday.  Who knows at this point though.

Emily turns 5 on May 30, and she is so excited. If you interested in sending Emily birthday cards (because she loves mail), you can send them to 

PO Box 5383

Midlothian, VA 23112

We are celebrating her birthday party tomorrow and thank you so much to Fairy Godmother Project, the Richmond Chapter, for helping making it all possible for Emily to have to have the best birthday party! Emily will have a surprise, this is been something that she hasn't been able to do since she was in school at CCDC back with all her friends, so she is going to be really excited when The FunBus pulls down our road. Thank you to Karen for going the extra mile in making sure that the FunBus is extra clean for Emily so she won't get sick.  Fairy Godmother Project wasn't done there, she also helped get a Moon Bounce House for Emily that will be here tomorrow and Laura from FGP is also going to make Emily a Princess Cake.  Thank you again Fairy Godmother Project for making this a wonderful day for Emily. 

TO ALL OF EMILY'S FRIENDS from CCDC, I couldn't reach all of you, if you read this and would like to stop by, please email me at ShannonHubbel@hotmail.com.  The party is tomorrow (Sunday, May 20th) at 1pm!!!!

Thank you also goes out to Emily's and our good friends Sue and Jojo. They made a long trip yesterday from Pittsburgh, PA to come and be with us this weekend.  Today in a little bit we will be leaving to head to Jessie's HipHop Recital and see her dance.  Pretty excited to see her dance, and family and friends will be there to watch. While we are at the dance recital at the high school, there will be some games going on in the fields in which I learned earlier in the week, that there is a wonderful mommy whom we have never met and her amazing kids are doing an Alex's Lemonade Stand Foundation for Childhood Cancer in honor of Emily! Emily counts will be good, so she will be able to go and see her sister dance and also see the kids who are doing this in Emily's name. Thank you Heather.

If you are interested in donating to an amazing foundation, please do so here in honor of Emily, http://www.alexslemonade.org/mypage/82521

Lastly, many people are writing to the governments in their area to make a difference about childhood cancer.  I honestly hadn't thought about sending one out with all that is going on, until I saw many people were writing to the Governor of Richmond and mentioning Emily's name.  So here is my letter:

May 18, 2012

Shannon Hubbel

Mother of Emily Hubbel

Governor Robert F. McDonnell,
office of the Governor
Patrick Henry Building 3rd floor
1111 east Broad street
Richmond, Virginia 23219

Dr. Mr. McDonnell,

I am writing you today to tell you about my daughter Emily Hubbel, and many other kids in the Virginia area who are fighting a childhood cancer.  Emily was diagnosed 12/23/2010 with a rare childhood cancer that forms in your nerve tissues, neuroblastoma.  There are many other children in the Virginia area, such at Wes, and Emma, Connor, Drew, Meesha and many other names that have a childhood cancer.  Childhood cancer robs these kids of their childhood, and Emily would be the first to tell you this.  She was diagnosed when she was 3 years old and now at almost 5, she lost a whole year of her being a toddler enjoying life and playing, rather in the hospital.  She is still battling this horrible disease that many other children pass away from. To name a few that have passed away would be Hayley, Trevor, RJ, Ila Jean, Krysten and many many more.  Do you know why these kids are passing away?  These children have passed because there is a lack of funding from the government for these rare childhood cancers, lack of treatments that are available because of no funds.

I did read your bio and see that you have 5 kids all whom are healthy and over the age of 20 and how important schooling is to you.  A healthy child is definitely what I would like for my daughter and all these other kids fighting childhood cancer.  Many people are writing to the governors in each state trying to reach the government and make it known how important childhood cancer is just like Breast cancer is and we need some awareness to raise funds so that our children are not passing away.  I hope that we will see that you are the first governor to say, “I support Emily Hubbel in her fight against childhood cancer and all those other children and I will be the first to make this change!”  The government needs to protect our children .

The past 17 months my husband, Doug, and I, along with many other parents have had to make decisions to give our child poison that goes into their blood, chemotherapy, with hopes that it will clear this disease along with other treatments that may or may not work. Many families, like us, have to travel outside of our home areas to find doctors and hospitals that will treat our children, and these were decisions that many parents never thought they would have to make as a parent. As parents we thought we would be making the decision what kind of dress would she be wearing for dance, or watching them playing ball, or taking them to a father/daughter dance, instead many children are in hospitals laying in bed getting chemotherapy, or not feeling well or have fevers.  It is so hard to tell my other children who are 10 and 2 what is happening with my 4 year old and why these children are suffering the way they do and if we had the government to protect our children, there would be hopes.

As a mom who watches her daughter receive chemotherapy, I hope that this letter pulls a heartstring and I ask that you try to put you and your wife in the shoes that my husband Doug and I are in. You can never put our shoes on and know what our children go through, but I ask that you try to understand what so many kids deal with on a day to day basis living with childhood cancer.  I beg that you be the first to stand up for what you believe in, and support childhood cancer, so that we can have more awareness, more funding and more treatments.

Thank you for taking the time out to read my letter, if you would like to speak personally with me, you can reach me at  XXX-XXX-XXXX or by email at ShannonHubbel@hotmail.com.

Best regards,

Shannon Hubbel

Enclosures

We will continue to keep you all updated on how things are going and provide lots of pictures from Emily's birthday party.

Have a great Saturday.

Happy Mothers Day

Just wanted to say "Happy Mothers Day" to all our friends, family and supporters that are moms!

We are enjoying the day together! Enjoy!

Scans Update

Today has been a very long day with lots of anxiety!! Emily and/or Brianna crying and just full of anxiety all around!

Results: Scans have appreciably decreased in uptake! The report indicates all of the areas demonstrate decreased uptake as compared to previous examination with no new areas of abnormal MIBG uptake!

This is good news according to Sholler, however I think the report of her catechlomines (HMA/VMA) being normal we thought for sure we were going to see clear in some spots, so in some ways we almost felt let down! However, let me just say we are comfortable with where she is at, no progression but so wished we saw more clearer scans!

The official report is "stable with clinical response"! Which means all of the spots are still visible and there but with less uptake!

Dr Sholler would like for Emily to continue on the trial and do 2 more rounds of chemo and have scans and see where things are then! However this time during chemo have Emily take 3 pills of nifurtimox and then when chemo is done go back to 2 a day!

I have to be honest here, we are now almost into 17 months of treatment , and treatment along with scans, being accessed/Deaccessed has not gotten any easier! Actually it has become harder and harder on us and Emily as well! Emily asks a lot more questions that we have to answer and now she has anxiety and fears over upcoming things that is different for us to handle! But this has gotten harder, we are exhausted from everything and our patience, minds and body can only handle but so much! In Emily's words today, "I'm tired of this!" we are so there with her! Scans really take a lot out of parents and bring out the worst in you, so this day by far has been really hard on Doug and I! The biggest part here is that some of the kids that started treatment around the same time as Emily and after are done with treatment and Emily is still at it or there are others who are not doing well and didn't make it and here our Emily is still fighting! This disease is a beast which is so obvious as hard as Emily has had to fight!

Today Emily also had labs done and her platelets had dropped pretty low from Tuesday's check, so she needed platelets! Her hemoglobin dropped a bit too, not requiring blood but it did drop a bit!

Emily will start round 3 May 21st as long as her counts indicate she is ready to start and count checks next week at home clinic! May 20th we will be celebrating her 5th birthday with a birthday party at home! She actually turns 5 on May 30th! Emily loves mail so if you would like to send her a card, you can send it to her at PO Box 5383, Midlothian, VA 23832!

Sorry if this update was a bit on the down side, but for me I went in today with very high hopes, and I know that Doug did also! High hopes of seeing some clear spots or even gone and all the spots are still there just with less uptake!

Emily we love you with all of our heart and can't wait to celebrate the NED party! We are all tired of this but we still think we can get you there to clear/NED! You are doing such a great job and mommy and daddy are so proud of you!

We head back home tomorrow with Wings of Mercy, an amazing organization with wonderful volunteers who have such big hearts! Thank you! The plane was a bit small to our liking and a bit more bumpier, loud and tight so we were quite happy to land! We had thought about getting a rental to just drive home, but it is just to expensive and I think we all just need to get home!

Well time to end this, we have an early morning tomorrow! Make sure you hold your kids tightly and tell them how much you love them!

Scanxiety Day -- Day 18

It's scanxiety day! To say that we are not nervous, don't have lots of anxiety would be lying because we do! This scan will tell us where we are going moving forward! Our hope is that there is less intensity in the spots or clear and most of all nothing new!

We gotta run the kids around so Emily will sleep during the scan and not move!

We will keep you updated!

Quick Update -- Day 16

Day 16 of Round 2: Emily had clinic today and to our surprise Emily's counts are on the rise and she didn't need blood or platelet transfusions. And as a matter of fact her WBC is already starting to come up, where last time we sat neutrapenic for almost 2 weeks. Round 2 is nothing like Round 1 was at all, which does bring us a little bit of concern.

This will be a quick update, because we have to be up early in the morning and be at the airport by 7AM for our early departure and hopefully the girls won't be fussy in the morning for having to get up so early. 3 hour plane ride and fussiness. HMMM. Off to Helen DeVos Children's Hospital in Grand Rapids, MI to stay at the Renucci House.

I ask that you all say lots of love and thoughts to Connor and his family who is on hospice, but can't leave the hospital because they need to be able to control his pain. And also say lots of love and thoughts forMichael who is also on hospice. Neuroblastoma is such a horrible disease and so many children have lost their fight to NB in the recent, a cure really needs to be found.

I will keep you all up to date on how things are. I normally do small updates on facebook -- https://www.facebook.com/emilysjourney -- but I will update here as well! Please keep Emily in your thoughts as she has scans for re-evaluation to see if we should continue this clinical trial that we are on.

Make sure you love and kiss your kids and tell them how much you love them.

Inpatient Less than 32 Hours – Day 9 - 14, Round 2

This past Monday evening was a long evening, another night of fever watching all night. Thankfully she had her line already accessed so this fear of going to the hospital would not be because of the line needed to be accessed. We ended up making it through the night with at one point it was surely high enough to go in, but it ended up going back down. Tuesday morning, it was 100.5, so we brought her in not wanting to mess with this in case the cold was causing this or even worse something else or even becoming septic.

No fever in the clinic, however she had low blood pressure with a high heartrate anywhere from 130s to 160s, Emily’s normal heart rates is 100 – 110. So, they went ahead and gave her mirapenum (spelling) for antibiotic and a bolus of fluids. The bolus was in hopes of getting her blood pressure normal and heartrate normal, however it did not. So Emily was sent for an xray to look at her chest because of the coughing and then off to be admitted.

Being brought to the 7^th Floor as inpatient flooded us with memories of when Emily was first diagnosed and then all the times after that she was admitted. It was almost as if things didn’t change, except for a few new nurses, a few new doctors and patients of course and then some of the patients were ones we had seen before. It was so hard to see her there, and like she did before she cried wanting to go home, because she didn’t want to be there. I really wanted to cry with her and thought this was no place for her. The childlife left a few gifts on the bed for Emily of the Little People Camper with a car and some hair stuff and socks. How awesome is that, and she just guessed on the camper stuff. Emily loves camping, so she loved the toys. Thank you ChildLife!! After getting into the room, Emily was ready for me to pull her in the wagon around the halls with her mask on. We strolled the 7^thFloor halls for 3 hours and after those 3 hours, my legs were on fire. Not many places to walk, so we continued to see the same people over and over again and some of the nurses even tried to get Emily to talk, but she wouldn’t.

Dr Massey came in and said that her xray was clear, which was an awesome thing, don’t want to bring an added worry! All night she continued to have no fever, she continued with her megace and nifurtimox and she was trying to eat a little bit. The nifurtimox did bring a bit of a problem in a hospital that does not allow FDA approved things. The nurse said that the pharmacy was coming up to take the nifurtimox to put their label on it. I was not thinking in the "FDA approved" thought, I was thinking about Emily's low counts and having this go out of my sight and who knows whose hands it would be in and Emily get sick after that taking them. So I wouldn't allow it to leave my sight. (Come to find out later, it was a good thing we didn't give it over because our nurse in the clinic said we may not had gotten it back since VCU doesn't allow non FDA drugs.) Daddy brought Brianna and Jessie up for dinner and I took the girls downstairs to eat while Daddy spent some time with Emily! When she was ready for bed, we laid down and the coughing got worse and worse. I finally went and talked to the nurse, telling her how dry it was in the room, was there anything we could do. She made a makeshift humidifier to put some wetness in the air, and within the hour Emily was able to fall asleep and stopped coughing as much.

Labs were drawn early and the doctor walked in early, telling me that Emily’s hemoglobin was 6.4 and that she would need blood. This was the lowest it had ever been before, since we have started treatment, so of course we were on board to get some blood. This probably was also the cause of the low blood pressure and high heart rate. Thankfully the blood didn't cause any problems and also she didn't have any fevers throughout the day. The doctor came i at 2pm and asked if we would want to go come if the cultures that would be released around 4ish came back negative. UM HECK YEAH, we would love to go home.

415 PM came around and she was ready to go home, so we packed up and were out of there around 445PM. Emily was happy to be leaving, she wasn't up to her 100% self, but she was getting out of there. She had to be back Friday for clinic to check her counts and see where here platelets were since they were pretty low before leaving.

Next day Emily was back to herself just still full of coughing, but happy and talkative. Friday's clinic brought still neutrapenic and platelets needed. Emily will go back Tuesday for counts, her nurse feels she will probably need blood, hopefully not because this means a long day in the clinic, but at least she will be prepared for flight. She will be accessed and not have to do that when we get there, and be ready for injection of the MIBG isotope.

Wings of Mercy, such a wonderful organization will be picking us up Wednesday morning about 730AM as we are off to Michigan with a rental car waiting and we will be staying in the Renucci House and then bringing us back Friday morning being back around 1ish. We were able to work it out that Brianna could come with us on the flight, which before she was not able to. Jessie will be at her dad's so she doesn't miss school and dance for 3 days. I will try to keep you guys up to date on whats going on and how things are.

Next week brings about scans and lots of anxiety, therefore scanxiety. While her HMA/VMA levels are low, it still brings the fears that we don't want or even that this isn't working. These scans are bringing more anxiety than we have had in the past, just because we want to know where we are going moving forward, whats next. Our hope is that Dr. Sholler says she is seeing an amazing decrease in the spots and would like for Emily to continue on the trial. (this trial is for at least 6 rounds). While we don't want to continue with more chemo, if this is working, we are happy to get the cancer out of her and continue on along with the nifurtimox.

This past week we lost a special fighter, Krysten. Krysten is a beautiful 18 year old bright blue eyes fighting neuroblastoma, she is no longer fighting and is now cancer free. Please leave her family love and thoughts on her obit, Krysten you will always be in our thoughts, we will miss seeing you in the clinic.

Continue to keep your love and thoughts for Emily as we continue to fight neuroblastoma with Emily and bringing her cancer free! Make sure you hug and love your kids and tell them everyday how much you love them!