Great Past Week

Emily's 2nd day of Kindergarden!!

Emily had an amazing first week of school.  All of the students were really good with her and she wanted to go back everyday.  We are so happy that she enjoyed her first week of school.  We are so thankful that Emily is in such a great place with great kids and such a loving teacher. 

Brianna on the other hand, had a hard time at school this week.  It was new for her, and new to be around a lot of kids that she isn't used to being around and just adjusting to not having a binky.  We are thankful that she is in a good place and they are working with her. We know it will take her some time and she will get used to it.

Jessie is doing well in 5th grade.  She has more homework this year, but to be expected with 5th grade.  

Overall this past week, was a great week and the girls did really well. We explained to Emily tonight that this week she would be in clinic all week for another round of chemo.  "I thought I was done with chemo!" We explained to her we thought she was done too and how she has 3 spots left and we need to get rid of them. Emily took the news well and we told her how proud we are of her for being such a good girl.  

Earlier this week, we heard some awesome news from Dr. Sholler. Dr. Sholler received approval from National Cancer Institute that Emily is eligible to receive CH14.18 compassionate use with an Echo and Pulmonary Function Test. These two tests need to be completed and sent over and hopefully can start CH14.18 within a month.  So, Emily will do another round of the Nifurtimox trial, 4 days of chemo with the Zometa, Day 5 Neulasta shot and then 3 weeks after the chemo, we will head back to Helen DeVos for scans to get ready to start Antibodies.  We are so happy that Emily was approved for compassionate use of the antibodies, this has been our goal to get Emily to antibodies.  After antibodies, we will have Emily on the DFMO trial that Dr. Sholler has, but that is to talk about when we get there. 

We are hopeful that with this round of chemo that her counts do not drop below 500 because if they do, she will not be able to go to school. It is likely that they will drop, but we will still remain hopeful. We did explain that to her, but we will see how things go. It has been absolutely amazing not seeing Emily laying on the couch these past few weeks, Dad and I have seen Emily run and play, laughing and having a good time.  It has been amazing and watching the energy she has. Yesterday we spent almost a full day playing outside, and the girls running and having a good time, and it was great to be outside with them and let them have fun (besides worrying about the West Nile). We didn't think she would make full days at school this past week, but we did and we are just so amazed that she did so well. Emily had her PFT on Friday, which was quite interesting, but she did pretty well with it.  We learned that Emily is 30 pounds, that is right, she is 30 pounds.  She hasn't been 30 pounds since diagnosis back in December of 2010, so we are hopeful that we can keep this weight up. 

So, please send all your positive thoughts that this round of chemo knocks out the 3 spots left and that Emily handles this round well. We also want to continue to thank all of the amazing people out there who continue to think of Emily and our family and for sending your thoughts and love to us, they mean so much to us.  Thank you again for all that you do.

Good night.  We will keep you up to date on how Emily is doing this week on the 7th round of the Nifurtimox Trial.  Remember to hug and kiss your kids and tell them how much you love them.

September is Childhood Cancer Awareness Month, spread the awareness.

The Weekend

I know many of you are looking for an update to see how Emily is feeling, texts, questions, emails and we haven't responded... We really haven't been up for much talking lately, so if you have called and/or we didn't respond to texts or emails, we are sorry!

Well, I wish I could say that there has been change of some kind, but in all honesty there really hasn't been any change.  The major change would be that she is having pain along with two of the spots that she says hurt to walk. We can't figure the pain out, but if you touch them she screams in pain.  We have tried ice, heating pad, frankencense, emla cream, but really nothing seems to help.  The time she seems at most comfort is when she is asleep, as long as you don't touch the spots.

She still has the four spots, and while 2 of them seem to look better, the other 2 actually look worse, bigger and swollen. While we know they are not bug bites, because there are not actual spots to look like they are bug bites, we just don't know. The pain has been horrific at times and enough that we have had to start the Tylenol with Codeine again today from when she had her bone pain last week, but she mostly has been sofa bound or in the bath or shortly in the pool. She said they don't hurt as bad in the water. 

This weekend has been really hard on Doug and I, mostly because of the pain she seems to be in and we don't know how to help her to make it better and really just what is happening.  We have been home all weekend, while most of it has been seeing her in pain, and this is really hard on us.  The pain she seems to be in is really scaring us. At one point, we almost emailed Dr. Gowda, but she doesn't want to to go the ER. On top of the weekend, Thursday we had a pretty bad storm and we lost Comcast so we haven't had any internet, phone or cable.

I did speak with Dr. Sholler on Friday, and she too is concerned about the spots on the skin. She said the bone pain she really thinks most of that is from the Zometa.  She requested that Dr. Gowda get a LDH and HMA/VMA. Which they were done. (Thankfully Friday afternoon Dr Gowda emailed and said that the LDH has come back normal and that the HMA and VMA should be back Monday or Tuesday) She also said please don't cancel the MIBG scan as of yet that you all have there, but I am going to start working on getting one in Michigan.  The concern would be that if this is truly progression, Emily would need to have the MIBG scan there to qualify for another trial there and insurance may not approve two MIBG's so close together. She said that she wasn't real sure about getting Emily in this coming week because she has quite a few kids coming in, but she would see what she could do. She said she has hopes that the spots are only infection, but that she couldn't lie and say she wasn't worried that they are anything else. As of right now, she wants to play it out and see what happens at tomorrows clinic appointment and then go from there. So, its really a possibility that we could be making a trip to Michigan.

As for Doug and I, we have tried to read and read and find information, but we have been unable to find anything much really. What we really found is that with the skin neuroblastoma is only 12% that get it and mostly found in infants.  So we have to look at it that the possibility is 50/50 chance.  Yesterday I think I tried to read and find out about information, that I just had to get away from it, because it was really starting to drive me crazy and the anxiety was building.

I have received a few messages again and instead of replying to all of them, it is easier just to post so that you all know... but most have been asking what would be helpful during this time... gas gift cards in the possibility we have to travel, donations by clicking here...others are asking what is Emily into these days and honestly she has been into her finger nails, painting and her Nintendo DS 3d.

Chemo should have been starting as a possibility of tomorrow if her ANC was ready for the last round of this trial, but Dad and I will not allow her to start with these spots and not knowing what they are. Dr. Gowda also indicated that right now any thoughts of a biopsy is not good because of low platelets.  She is still off the Nifurtimox until we know what is going on and Dr. Sholler is agreeable with this.

Tomorrow is a new day, and the hope is that they are better, almost gone and Emily be moving forward. Please send your thoughts and love.  Also this week I will be trying to work on finding a place to get VA Blood Services out and have a day where people come and donate blood or platelets in honor of Emily (Thank you Mary Ann for getting a number for Emily).  We will update you all as we know more information as to what is going on. 

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

The Lows

Emily today on the couch watching a video on her ipad, tired.

The past two days, Emily has been in her lows. She doesn't have a lot of energy at all and really hasn't done a lot of moving from the couch except for going to the bathroom. Tonight I did get her off the couch and into the tub, hoping that it would make her feel a little bit better. She doesn't really want to be messed with by her sisters and just wants to be left alone, except to rub my arm or daddy.  Her eating has definitely decreased, enough to which has really concerned us. We are continuing to try and work with her and using the megace in hopes that we can just get her to eat.  She is eating a few things, but not a lot.  We obviously know the culprit and what is causing her not eat, however we are just continuing to hope that we can work around that.  We are on the last 2 rounds of this trial, and like Dr Sholler said it would be beneficial if she can handle the dosage that she needs. So we are trying.  What we don't want to happen is Emily has to go inpatient and be placed on TPN and lipids and we know she doesn't want to either. Plus the TPN will only set us back, so baby girl we really need you to eat.  I know she is trying really hard for us, and to us that means the world.

Tomorrow she has clinic, to have her counts checked and see where things are.  I am sure she will need platelets, not sure about blood, but it is a possibility that she may need that as well.  Its probably going to be a long day in the clinic.  We are going to imagine that she is probably at zero for WBC, which means can't calculate ANC.  So we continue to hope for no fevers.

This is going to be short tonight, I am tired and ready for bed, but really just wanted to update and let you know where things were for Emily.  Send your love and thoughts..

Dr. Sholler Rocks

Emily has one day left of this round (round 5), that being tomorrow. We will head to the clinic in the morning, have counts checked to see how her numbers are looking and then have chemo. Hopefully she won't need any blood or platelets because after clinic, we are volunteering our time at the Lemonade Stand. Emily will also get to take a picture tomorrow with the Therapy Dogs Group, "Dogs on Call" that comes in, with her favorite dog Stewie.

Emily during chemo at clinic 7-19-12

Emily has been doing ok this week, she has been falling asleep about 7-730PM this week and then getting up in the morning to go to clinic for chemo. During the day she seems to be doing fine, but during the evening she is a bit more tired. A couple of times this week she has complained of tummy pain, the first time we gave her zofran, but tonight we gave her some peppermint oil that we rubbed on her belly and that seemed to help a bit. As the week has gone on, she isn't eating as much, so we are giving her megace in the morning and evening with hopes that this will help with her eating. Thankfully she didn't have any side effects to the Zometa and overall seems to have done fine with that.


Emily will have her fluids tomorrow evening and then Saturday morning, I will be able to deaccess her. Sue and Jojo will be coming into town tomorrow afternoon to visit for the weekend and we are looking forward to relaxing with them. This round is already proving to be a bit harder on Emily than the last one. We would suspect that the increasing of the Nifurtimox the day before chemo up to 3 and keeping on probably has a lot do with that. We are hoping for no fevers, continued eating habits and no weight loss, so please hope and think about her during this time.

Have you guys heard of Dr. Sholler? She is one amazing pediatric oncology doctor that specializes in neuroblastoma and medulloblastoma at Van Andel Institute and Helen DeVos. When we last saw her last week, she said to us, " Please tell anyone that has been trying to contact me, I am getting back to everyone, it has just been taking some time and I am not ignoring them!" Dr. Sholler has really picked up a lot of patients and we are happy to see her taking these patients in and having "HOPE" and taking care of them. Dr. Sholler not only researches many drugs that can help these children, she also does a lot of research on the natural/homeopathic field of things, and honestly that is just amazing and she shares what she researches. Dr Sholler has a great way with interacting with these kids and most of these kids who don't normally react with other doctors interact with her.

About a week ago, Emily's bestest friend Sue and Jojo, made t-shirts with Emily's Hope Cure Childhood Cancer. They were making them and sending them to us and Sue asked for Dr. Sholler's address because she wanted to send her the Neuroblastoma pin and a t-shirt and a thank you note. Sue and Jojo, you guys rock and we love all that you do for us and other families.

Today we received a text message from Sue with the thank you note handwritten directly from Dr. Sholler. That is right, Sue got a "thank you" note from Dr. Sholler and my favorite part out of this note is "I do hope and believe that together we will make a difference". She said hope, what a woman to take a minute out to say "thank you" to someone who believes in her and what she is doing for our children. Dr. Sholler, we love you and thank you for all that you do for all of our families.
Just a quick update to tell you about how Emily is doing and Dr. Sholler. Please send out your love and thoughts for Emily for an easy Friday with no transfusions and no extreme drops of counts and a great weekend.

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.

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!

Round 2 New Trial Started

last week and has been completed...

Just wanted to put a quick update out there. I apologize there hasn't been an update in a good while. I have really pulled myself away from social networking as much as possible just from seeing and reading of other children passing or not doing well and from negativity that has been received.

Emily did have quite a bit of a hard time there for a bit prior to starting this next round, and it took her 2 weeks to get back where she needed to be in order to start the next round. She lost quite a bit of weight (about 5 lbs, which she didn't have to lose because she is already entirely way too small for her age), didn't want to walk from being very weak, and very fussy. Also her ANC and platelets and others were low which also contributed. They did take her off Nifurtimox for 7 days to help get her back on track. During this time she was taking megace (which is used to treat the loss of appetite) and each week we have been going up about 1ML. When the 7 days were over, we had the option to either stay off the nifurtimox or go back on, but if we wanted her to stay off of it, she would no longer be able to be on the trial. The positive that we are seeing is that Emily has had the lowest HMA & VMA levels that she has ever had since being diagnosed and are now within normal ranges, so we honestly feel like what we are doing is the right thing.

With the help of megace, Emily is eating well and has gained 2.7 pounds and is now at 27 almost 28 pounds, so the megace is doing its job. This past Monday Emily ANC and platelets were where they needed to be and she was able to start Round 2 of the Nifurtimox trial. So the chemo started. Emily's sister from Massachussetts was also able to be here and visit and helped with clinic during the chemo this week which was extremely helpful.

Chemo completed Friday after an extremely long week with long days at the clinic every day and each night Emily was exhausted and ready for sleep. She had moments twice this week where we thought she was going to sick, but she did not thankfully! So far her counts have not tanked and for that we are thankful, but we are being very careful to keep a close eye on her and making sure that she stays around healthy and feels as healthy as possible with no fever. As we all know fevers mean inpatient stays.

Scans have already been scheduled for the week of May 7th at Helen DeVos in Michigan, but we are just waiting on the final dates and times. Our hope would be just to drive our own van since last time we had to leave on the weekend and be there 3 days before the scans and couldn't take our youngest with us and stay in the Renucci House, however with gas prices that probably won't be possible. So if any of you are interested in sending gas cards, we would love that because they would be extremely helpful to make a trip from VA to MI.. If not we will be looking into seeing what either PALS or Wings of Mercy can do.

Top: Jessica (BF), Myself, Jessica (Cousin),
April (sister), Elyssa (daughter), Jessie (daughter)
mine Lana and Sheree (RM Friends)

Lastly yesterday a group of 8 of us did the 5K ASK Walk for the ASK Organization which helps the clinic where Emily and many other children are treated and also helps the school where Emily goes when her counts are well. "Team Emily" ended up making $695 and without the help of all our fans and friends, we would have never made that. I was very happy with the outcome and next year hope to make a bigger "Team Emily" and make more donations! Again thank you so much family, friends and fans for helping making this possible. It means so much.

I want to continue to say thank you to everyone for your continued support, because it totally makes things possible for us and I just want to say thank you! Thank you! Thank you!

Remember to hug and love your hugs and tell them how much you love them. Please also send your love and thoughts to Krysten Nicole Collins who is fighting Neuroblastoma as well and not doing well right now.