End of Round 6 Nifurtimox Trial

It is hard to believe that today Emily finished the 6 round trial of Nifurtimox, it was a long 6 rounds. Overall she had a good week, she had a day where she didn't eat much and fell asleep early and a night where she felt like she was going to get sick. But overall, she handled the week really well and in Emily style, with a smile.

Thinking just one year back, Emily had just come home from her 1st transplant on August 8 and would be admitted September 7th for her 2nd transplant, hard to believe one year has passed and Emily is not completed with treatment yet. Thinking back during that time, was really hard for us, with Emily being at the hospital for 3 weeks both times and not getting much family time together. It was just Doug and I doing all the work to keep our family together as much as we could. Just so hard to believe that we are one year passed this.

Her counts have already started to decline, but that is to be expected and we expect to see them hit rock bottom come Monday. So, we are being extra careful, because we don't want to see her like she was Round 5. For 2 and a half weeks after Round 5, she was down and spent a lot of time on the couch.

Today we both went to clinic, because we were supposed to meet with the Education Liaison through the hospital, for some reason she didn't make it in. After speaking with a few people though, many think it would be better if Emily didn't go on the first day of school and especially if the Education Liaison hasn't talked with the class. Doug and I talked about it and we agree, because the first day is a bit hectic and we would really like for the class to be talked with to understand about Emily. Doug and I are both nervous about Emily starting school, but she wants to go to school and we want her to go and things be as normal as possible.

We are still waiting on confirmation of dates that we will head to Michigan, and also waiting to hear if Emily will need a complete re-evaluation with bone marrow biopsy and the whole 9 yards. Emily will also have a hearing test next month as well, since it has been about a year since she has had one.

Just wanted to give a quick update of Emily and how she is doing, she is already asleep tonight beside me and Brianna is trying to fall asleep. It has been a long week and we are looking forward to hopefully sleeping in and just enjoying time together as a family at home. Tonight she will get her last bag of fluids, and then tomorrow I will deaccess her. Its hard to believe that Doug and I have had to learn to be nurses at home and take care of Emily, but we do it with ease. It was never something we thought we would do. Emily will return to clinic on Monday for counts check and neulasta shot, where it may be a possibility that she will need platelets.

We will continue to keep you updated, please hug and kiss your kids and tell them how much you love them.

Chemo Round 6 of Nifurtimox Tomorrow

Thank you to our besties Sue and Jojo for treating us to Yogi Bear in Luray and even better that you all joined us in the celebration! We enjoyed a weekend away with all the kids and our besties! The weekend was too short and we wish that we had longer to stay with our besties and the campground! Thank you guys again for supporting us along the way and continue to do so and traveling 5 hours to visit! You guys are pretty amazing and we really Appreciate all you do for the Hubbel Family!

Tomorrow starts round 6 -- the final of this trial and then we head back to Michigan for scans! We are ready in some ways to get this show on the road and then in other ways we are not! But school starts after Labor Day so we hope she can start with the rest of them! Hopefully the scans can be done before that but we will see! Although as for now we are not as worried about the scans but we are pretty sure we will see some residual disease but surely not as much! So thankful this seems to be working!

Just a quick update and we will continue to let you know how the week goes with her chemo!

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

Question Answered

Emily's clinic visit went well yesterday, all of her counts are looking good. She didn't need platelets since they are at 34 but they are still pretty low, hemoglobin is still on the low side of 7.9 where it has stayed all week, but Emily is in a great mood. Her spirits are wonderful and she is happy! Her sores are healing and she is able to put a bit more pressure on them. We learned that her sores were staff infection, we don't know the sensitivity of them yet, but the antibiotics that she is on will help take care of them. We haven't received the results back on the biopsy yet, but hopefully those should be back soon.

Everyone has asked the question..."does this mean she is done with treatment?" to answer that, "no" . Emily has one more round of the nifurtimox trial with chemo! She started her pills back up on Thursday and Monday she will start her 5 days of chemo! After this we will travel to Michigan for scans with Dr Sholler!

Our goal this whole treatment was to get Emily to antibodies and that is still out goal and we will fight for her to get it! Antibodies is supposed to get all the residual disease that may be dormant or hidden or any little spots left! So after scans and we meet with Sholler that is where she tells us what to do next and she knows we want antibodies so that is the hope!

While the news that Emily's scans were completely negative with not being able to see any tumor sites was a total opposite of what we expected and i'm sure everyone else, we still have to charge on. Let us be very very honest we were shocked and honestly didn't believe it, but that is because for so long we always had spots show on the scans! We absolutely love and are so happy with the results of the scans, and we are in complete shock and awe with our jaws just being picked up toff the floor that VCU can't see anything. So with the awesome news that VCU provided we are celebrating!!! While they say that their scans are not optimal as compared to the ones at CHOP or MI, they are clear and Doug and I will take these results and run with them. We have ran with them to a campground with our best friends Sue and Jojo!! However knowing we could go to HDCH (MI) and show a little bit of spots (possibility bc we have to be real) but we are still so happy our little girl has fought as hard as she has and look where she is today!

Many of you have said Emily is a hero, Emily is a fighter and she fights so hard and will continue to do so for the rest of her life! But we need lots of heroes out there, do a good deed, donate blood! Emily is a princess fighter and she is one amazing fighter!

We are in complete awe at all of the wonderful people, all the beautiful words and happiness that have been left, that we just can't thank all of you enough.

So as of now we have met our besties sue and Jojo to camp for the weekend! Sue and Jojo thank you do much for traveling to celebrate this amazing wonderful news that we have received! We are so happy to have you guys in our lives!

She Amazes Us

Well the biopsy was completed yesterday in the morning! The biopsy was done on her foot! We were explained that they found a hard nodule but it will be tested! Results could possibly take up to 5 days! sample was overnighted to be sent to Dr Sholler! They also tested another spot for infection! We may possibly have results on infection today (but they take 24-48-72 hours to grow and they hold them for 5 days!) however blood cultures continue to be negative! Yeah!! Afterwards she was in a lot of pain and the wearing off of the meds in the PICU that were given she was extremely upset!

She did take a nap afterwards which she needed! She has been on two antibiotics since being here, one for broad spectrum and the other for skin infections! While they still don't know what the spots are they are treating it until we know!

She has had to have 4 units of platelets and blood! Thankfully no more bleeding gums!

Today the plan is to have her Mibg scan this afternoon and then get discharged sometime after! As of right now they are probably going to send her home on antibiotics! We should get the results from the Mibg tomorrow and then wait for the biopsy results and then have a plan of how to move forward!

Emily does have to start on the nifurtimox pills again by tomorrow or she will be kicked off the trial! So once we have Mibg results we can start those back up and if all clear she should be able to have her last round start on Monday! But all of this is just a plan since we really don't know anything yet! Lots of speculations but we know nothing!

Her spirits are much better and she is happy! The pain is much better today and she even walked a few steps for the first time in about 5 days! She amazes us with her strength! We are so proud of her! She shows us everyday just how strong she is and just how well she can handle all of this! She is also asking daddy a lot more questions about what is going on and what is happening! And daddy always knows how to answer her questions just right!

We will update as we know more! Just send positive thoughts for no other uptake and the biopsy to be nothing!

Hug and kiss your kids and tell them how much you love them!

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. 

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.

3 Days Left

Round 5 has started... Yesterday was a very long day in clinic and one that I know we are all glad that is over! We had a couple of issues yesterday one of which was getting Emily the Zometa that Dr Sholler recommended! VCUs pharmacy has never given Zometa to children and we didn't have it written in a protocol! Zometa is actual in a few clinical trials for neuroblastoma (Bisphosphonates) that is to help with metastasis in the bones like Emily has! They were doing research trying to locate where Dr Sholler got the amount that she asked Emily get! Finally the pharmacy approved her getting the Zometa but they were going to give her less than the amount than Sholler recommended, and we wanted her to get what was required! Then Dr Gowda was able to pull up some references for the 4mg/m^2 dose and they approved the 2.4mg! However prior to getting that she also had to have antacids to help the stomach since Zometa can upset the stomach, the other issue was Emily's specific gravity on the first day has to be =1.010 to start the chemo since she is getting cyclophosphamide (one of the chemo she is getting). It took her giving her urine 3 times to meet the amount and she finally met the specific gravity about 1pm so then she had to wait for the zofran! The pharmacy was one of our biggests issues yesterday!

Yesterday was also a bit of a hard day seeing one of Emily's friends completing treatment for neuroblastoma and having the broviac Hickman line removed! We are so proud of her and their family for being done and getting through such a hard journey, but they made it! But Emily should be done with treatment also now and just knowing she is not there and how much longer she may have makes it really hard! Emily fights this journey with all of her might and we too fight with her! She too asked often lately when will I be done with treatment? A question dad and I have a hard time knowing what the answer is...we just continue to have hope that what we are doing is the right thing! Emily daddy and I will continue to hold your hand and walk along with you during your fight of this journey!

Emily will be starting kindergarten in september and she is so excited about going and being with other kids and just having a somewhat of a normalcy to her! Daddy talked with her about school and her having hair and gave her a choice about hair and if she wanted to have hair! She told daddy she wanted to have hair so we told her we would figure out what we needed to do to get her hair for school! I was reading Emily griffins update and her mom was talking about getting a wig through VCU which I had no idea, so I inquired! The child life specialist Katie brought a form that needed to be filled out, "Application for Hair Replacement". Claire brought a box over yesterday that had a wig that they make and show the real hair that you can brush and color samples for hair, we were able to pick out a color that was the closest to her normal hair color and it is being ordered! The hair is real hair that can be washed, cut and styled so it will be nice for Emily to have and feel comfortable about going to school with! Thank you so much to this amazing organization "children with hairloss" a non profit organization.

Day 2 of round 5 went off with no problems today! Thankfully it was a short visit!! 3 days left of this round and we continue to hope she has no issues! Counts were checked Monday and they will be checked again on Friday to make sure she is good for the weekend!

We are looking forward to the weekend, Emily's bestest friends Sue and Jojo will be coming in Friday and staying at Hotel Hubbel to visit! We can't wait to see you guys!

We will continue to keep you updated on how Emily is doing! Emily has been asleep tonight since about 730pm tonight, not sure if she is having side effects from the chemo or the Zometa, but hopefully tomorrow she won't be as tired!

Chemo Starts Tomorrow

Tomorrow starts Day 1 of Round 5 of the nifurtimox trial for Emily! Today we started 3 tabs of nifurtimox along with the melatonin tonight! Tomorrow she will get accessed and stayed accessed until saturday when I take it out for her and get the zometa along with her regular chemo! Tomorrow will probably be the longest day all week since her specific gravity has to be at a certain amount on the first day and the rest of the week she will do fluids at night!

Send your love and thoughts for an easy week and no problems!

Much Needed Update

We apologize for not updating in so long, but honestly there really isn't any excuse as to why we haven't update, so we want even try to make up one. I have been updating facebook often and as often as I canr, so please make sure you are following on facebook, because you will get your most up to date updates there. http://www.facebook.com/emilysjourney
Since the last update Emily has had her 3rd and 4th round of the nifurtimox trial that she is currently on. She has handled it pretty well, however the last round (round 3) when her counts dropped, she stopped eating and we got down to 25 lbs. Daddy had taken Emily to clinic and I had gotten a call at work from Daddy that they wanted to admit her, which neither of us would allow because we knew we could get her to eat. Hearing that they wanted to admit Emily really upset Doug, knowing how much it upsets Emily, he hates to see Emily so update and it just breaks his heart.,So, since that time we have been working with her a lot about eating and making sure she is eating foods with a lot of calories. Thankfully Emily was not admitted after a few days of us working with her and she was able to gain a pound, so they didn't admit her. We also stopped the nifurtimox during that time and that really seemed to help as well. During this time, we also transferred all clinical trial holder from Levine's to Dr. Sholler. Dr. Sholler requested this mainly because when we emailed we would never hear back from anyone at Levine's and would hear from Dr. Sholler. This really doesn't make any change for us, so it works for us.

After that Emily really has been doing well overall. She took Round 4 of chemo and nifurtimox really well and we haven't had any major issues. However Dad and I have been working a lot more with her about eating this round and it really has helped, the weight has really maintained. Dad and I are really proud of Emily because she has been doing whatever we tell her and really trying to do what we need her to.

This past week there have been so many children who have passed from this horrible disease and with each one, it just gets harder and harder to realize how horrible this disease really is.We are thankful that Emily continues to be happy and handle treatment. We have noticed though as she has gotten older the questions are coming more and more. I have to give it to Daddy though because he handles the questions very well, and can answer them quickly with answers for her to understand. Sometimes for me it takes more a little more time to think about it. Emily is really excited about starting kindergarden this year. We really debated about doing homeschool, but Emily doesn't want homeschool, she wants to go to school when her counts are good and we want her to be happy. So we talked to the education teacher at the hospital and she is all ready and once they found out whose Emily's teacher is, they will be able to work with the school and she will actually be able to go and talk to the kids in her classroom and tell them about Emily and have them understand what she is going through and then why she won't be in clatss all the time. Emily wants to go to school with Jessie! Now Daddy and I will be worried about her and I know Daddy's biggest concern as well as mine is that the kids that are not in her class or just around the school will pick on Emily for either not having any hair or being underweight. The first time Emily comes home crying that she doesn't want to go back to school because the kids are picking on her, we will pull her out. She is going through enough not to have to worry the kids picking on her.

Scans are coming up, no date has been confirmed and the week that they are scheduled keeps getting changed, so hopefully we will have a confirmation tomorrow from Dr. Sholler. While we are not stressed out yet, as the time gets closer Dad and I always have scanxiety.This is just something that will probably never change. The positive is that Emily's HMA & VMA continue to stay low, so our hope is that this means that the spots are continuing to go away.

I want to continue to say thanks to all of the wonderful supporters of Emily's who continue to think of her, pray for her, love her and send her encouragement, cards, gifts and love, it means so much. We always try to thank people directly as soon as Emily receives things in the mail, but I also like to tell you all how much it really means to Emily and the rest of us. Your kindness reaches a long way and we can't tell you how much it really means to us.

I will try to do better about updating you all, and keep you better informed about what is going on with Emily. Like I said I constantly update Facebook, but I will try to do better and reach the rest of you here that don't facebook.

Thank you again!

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!

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!

Not Feeling Well -- Day 8, Round 2

So here we are Day 8 after the chemo started 8 days ago. We had a pretty calm weekend after the ASK 5K Walk. I did deaccess Emily Saturday afternoon. That was somewhat eventful, because it was the first time I had ever done that and our nurse we had last week, didn't give specific enough instructions. So, once the dressing tape was off, I tried to take it out and it wasn't budging and I freaked out so I had to call Critical Care who helped me and it was successful. Sunday Emily was feeling stuffy/runny nose, but still was feeling ok. She woke up several times unable to breath or from coughing too much and was up at 4AM on playing on the iPod coughing. She said her throat was sore and she was drinking lots of water.

Emily wasn't scheduled for count checks until tomorrow, however this morning when she wasn't feeling well, couldn't breath and coughing, I put a call into the clinic to see if there was an antibiotic that we can put her on to get this nipped in the bud. Instead they wanted to see her in the afternoon to do a throat swab for strep throat, check her counts and then give her the neulasta shot. This meant that Emily would need to be accessed again, and her anxiety was high and she was extremely upset knowing that she would need to be accessed. Thankfully it was done quickly.

Well Emily's counts have dropped to 0.1 which means her ANC can't be registered with no WBC. OMG they dropped quickly, Friday's WBC counts were 3.5 and today they were 0.1 WOW. At this point, its a waiting game for her to get a fever. Our hopes is that she does not, like we did last time, and we really hope she doesn't. But with this cold, we are not quite sure what she has because the strep will take 24 hours to come back and really there is nothing that we can do to prevent this. If is a cold, or strep it sucks with the fever and low counts.

Tonight since we have been home from the clinic, Emily has been sleeping on the couch not wanting to be messed with. At one point she woke up in sweats, so we put a sheet on her, but thankfully no fever so far, I think we were at 99.8. I have been sitting by her, still doing so while updating and she is rubbing my arm. Such a sweet girl, I hate to see her have to go inpatient with a fever however the thankful part she is already accessed and we won't have that added in this time.

Send your thoughts and love that we stay home like we did last round!!

We have received a few emails of people who want to send a gas gift card quickly to us for next weeks travels to Michigan. We really don't want to leave Brianna home this time because she is having a harder and harder time without us and Emily and we just don't want to do that to her again! It is so not fair to her. So, it looks like we will need to leave Monday night to be there by Wednesday morning. The address to send gas gift cards is:

The Hubbel Family

PO Box 5383

Midlothian, VA 23112

Hopefully we will not be inpatient with low counts and not be able to make the drive for her scans because I know previously she had low counts quite a long time before they started to go up. Please send your thoughts and love that she stays home and we are able to make the trip next week.

Thank you so much for you love and thoughts as we continue to fight the fight. Emily is such an amazing kid!

Day 1 New Trial

We got into the campground late last night and ended up getting to bed late so everyone was exhausted and didn't want to get up this morning!! Plus I heard the alarm go off and turned it off and fell asleep until a little late! Oops!

A new area and a new hospital to adjust to! Its nice here and so far everyone has been very nice and we really liked Dr Kaplan! But its been a long day here at Levines today!

We met with Dr Kaplan while the girls played and went over preliminary about Emily and then talked about the trial and any questions we had! Emily had to be accessed again today and she screamed and cried and then once it was in she was fine! She seems to be having a harder time with this access with it staying in saying it hurts to raise her arm and is holding it, but eveything looks ok! This has to stay in until Friday so I am hoping that she handles it well! And there are no problems!

Overall her counts look great and everything looks good, so we just wait while fluids are going now which need to go for an hour! She did take her nifurtimox well with no problem by crushing it and putting in apple juice and then taking by syringe (go dad, great idea!!)! She will have to take these 3 times a day (today only twice)! Once the fluids are done the chemo will start!

Doug and I have been dragging feet about the chemo starting again, it's still hard to swallow that we have to do this and that she still has spots that don't want to go away! Please put all your thoughts into this chemo and pill doing it's job, because I know we are!

So by 605pm Emily will have blood drawn for the trial and hopefully we will be out of here by 630! A long day and a long week ahead!

I will continue to keep you all updated on how Emily is doing!