Today is Scans

We made it to Michigan Monday evening by dinner time. Our drive on Sunday was an icy mess most of the way and it was kind of crazy to see snow from our front door at home until we arrived in Michigan!

My dad made it to Michigan by 1130 Monday evening due to some cancelled flights because of weather! 

Yesterday Emily had clinic to be accessed for labs, urine markers, physical and then injection. Hearing test was cancelled since we just had one 3 months ago and we only need them every 6 months on this trial. Labs look great as they have been and physical went fine! Nurse Practioner is happy with how well she looks and we are too!  Injection went fine and Emily wanted to be deaccessed since we are at a hotel with a pool and she wanted to get in the pool. After the injection was done the nurse wasn't paying attention and didn't put heparin in her line to close it and deaccessed her and realized what she did. This meant Emily had to be accessed again only to get the heparin and be deaccessed. Needless to say Emily was pretty upset as was mom and dad. Doug had to leave the room to not say anything nasty but the nurse really needs to pay more attention Emily should not have been accessed twice like that.

After leaving clinic we had lunch and hung out with my dad for the rest of the afternoon! The girls played in the pool for a little while, ran some errands and dad took us out for dinner. Dad, thank you for coming and bring a part of this journey we are on. We thank you!

Today is scans, so don't forget to wear your Emily gear or pink and purple!!  We meet with Dr Sholler after the scans. We are ready for this to be over and head on continuing on DFMO. Please keep Emily in your thoughts for stable scans!

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

Long Overdue

I realized when I posted about Teddy Greer's Parents Wish that  I haven't posted in quite some time and I honestly don't know what happened there.  And while tonight won't be the night that I go into a huge post because we have a lot of scanxiety going on right now when upcoming scans.  

Emily just finished the 3rd round of antibodies on Friday.  So, tomorrow we leave for Michigan and have MIBG Injection tomorrow, scans Wednesday morning and we meet with Dr. Sholler Thursday morning.  These are big scans for us...being that Emily hasn't been on chemo for about 3 months now, so our anxiety is extremely high and what also makes the anxiety even higher is that December 18th into the 19h marks 2 years since Emily's diagnosis.  2 years ago tomorrow we went into the hospital and it is when it all started.  2 years.

I will update more tomorrow.

Please send your love and thoughts.

3 Days Left

Day 1...mommy went to work yesterday and Daddy took Emily to clinic for chemo. Mommy has a hard time when she is not there with Emily, but I know she does just fine, although she didn't want me to go to work yesterday, as I was deaccessing her in the am before I left since she had been accessed for 7 days. They wanted to give her a little break (3 hour break or so) to access her again which will be for another 6 days. She did great with daddy and Daddy did well with the accessing for Emily!

Emily is still on her antibiotics and as of right now they are scheduled to be completed tomorrow evening unless we find out differently. Since she started chemo yesterday, she will also be on fluids for the week ending Friday evening. Emily is 27 pounds which is awesome, she has gained some weight, we are hopeful we can keep that up.

Day 2...mommy took Emily to clinic and today was a really long day! Chemo finished in good time but because her hemoglobin had dropped they wanted to give her blood! She will probably need platelets tomorrow! She has 3 days left!

Emily is handling things well though and we did tell her the good news we received from VCU and that she only has this last round of chemo and then some more treatment that wasnt chemo! Did learn today that Emily will go for follow up Mibg scans with dr Sholler during the week of September 3rd! It's a shame it has to be the first week of school but we are hoping that Emily will at least be able to go to school on Tuesday the 4th with Jessie and then we leave the 5th! However we just don't know yet! Then again depending on her counts she may not be able to go on her first day of school!

School right now is the other part we are working on! I did talk to the school and they understand the situation and also understand that Emily will not be able to have updated immunizations so we have to get the medical exempt form signed along with homebound! Dr Gowda did tell us that right now Emily probably won't be able to make it a full 8 hours of school either! Brianna too will be starting daycare in 2 weeks at Emily's old daycare! They are such a great daycare and have been so good to us!

We did get Emily's wig in last week and it looks great on her, but the hair is pretty long so we need to go somewhere and get it cut and also figure out how to get Emily to like it and wear it with no problems!

So far the first 2 days are going well and Emily is doing ok! We will continue to keep you updated!

Please keep Jack Bartosz and his family in your thoughts! http://www.caringbridge.org/visit/jackbartosz
Jacks parents were told that they have no other options for Jack! This disease is terrible and breaks my heart! We have never met this family but they are constantly thought of, please leave them some love!

We Are Home

Well we are home! Emily is already asleep on the couch! Her spots are still sore but dad and I will be keeping an eye on them! She will be home on IV antibiotics for a few days and needs to be back Friday to check her platelet counts bc they dont want to ever let them get as low as they did before! Emily did great on her Mibg scan today...we don't have any results yet, but fingers crossed! Just happy to be home together!

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. 

Is it Friday Yet?

Emily wearing her cap from
Beautiful and Bald Barbie! Let's see if we can get it made

We have scanxiety...and there is no way around getting out of that feeling that comes along with scans to see if the clinical trial that Emily is on is working.

Is it Friday yet? We are ready for Friday because this would mean that we have already flown into Michigan, had the MIBG Injection and had the MIBG/CT fused scan and already talked to Dr. Sholler to know where Emily's scans stand and we would be on our way home back to Virginia.

Emily had a great weekend, although the weather was extremely hot, the girls spent the weekend in the pool at home. We also got to see some fireworks again, which Emily really enjoyed and just being out of the house.

Monday Emily had clinic and her counts were looking good, she didn't need any platelets or blood and her WBC/ANC is up, so based off that information she is ready to start Round 5 of Nirfurtimox Clinical Trial (cumulative chemo round 13 -- WOW) She also handled getting her port accessed again like a princess with hardly no crying and definitely no tears. We are so proud of her.

Round 4 has been one of the weirdest rounds we have had yet. Emily overall did great, she has had energy (besides when her hemoglobin was low) and been playing and having fun. She never reached a point of completely stopping eating like she has the last 3 rounds, and she not once even reached having a temperature, or even fever watching. Thankful, it was nice and Emily right now is at 27.5 lbs, when last round we were at 25 lbs.

Tomorrow we leave for Michigan, again through a wonderful organization, Wings of Mercy, who have been so helpful to us the past few times we have made the trip to Michigan. Early morning, so we can get there and get the car rental, which Northern Air was so grateful to offer a discounted price, and get to the hospital to Emily can have her MIBG Injection. After than we will need to check into the Renucci House and get settled in.Thursday will be another early day of waking the girls up nice and early and get them moving early morning so that when it is time for Emily's scans, they both fall asleep. This has worked the past two times, so we are hopeful this works again.

Scanxiety is high. Our biggest worry (as any cancer parent) is progression. Emily has never been clear (NED - No evidence of disease) and this is one of our biggest hopes is to get the news of NED. HOPE!

We ask that you leave Emily lots of love and HOPE for scans to be better than last time or better yet NED. We also ask that you continue to spread the awareness of Emily and all the other children fighting childhood cancer. We will update more as we have more.

We Are Here

 

Emily slept for 3 hours on the way and was so happy last night!

 So, we made it to New Jersey on Sunday evening. We ended up leaving later than we had planned to leave on Sunday and then half an hour into our ride, we realized we left our gift cards at home, and had to turn around and get them. We ended up making it to New Jersey to the campground by 7PM. We get to the campground and I run inside to get the site and pay and was shocked when she said your friend took care of it in full. I was like, what who? So a huge Thank you goes out to Sue for taking care of our week here at the campground. It means so much!


We miss the girls already, Jessie is with her dad and Brianna is with my parents. So we are missing them already! Also it snowed in VA (and we never get snow) and no snow here in Jersey/Philly area. Both of the girls got to have some snow time.

Here we are, it is Monday night at 250AM, and I have worked for the night...Emily and Doug are both asleep and here I am awake, wide awake (which is weird for me when not being in the hospital with Emily)...Emily had a visit today at CHOP for a consulation on the broviac removal / port insertion and with Anesthesia Resource Center and then the MIBG Injection. Emily doesn't really know that she will have the broviac removed and the port placed, but I somewhat think she does. We haven't talked much about it, mainly because she will get anxiety about the surgery! We are both nervous about this, obviously because of surgery but also just because of how Emily will be when it has to be accessed. While the best part of it will be, she will not have to have dressing changes and will be able to go swimming and go to school and not worry about her line being pulled. 14 months of not being able to go all the way under water, it will definitly be different. Dr Mattei did indicate that it will be sore for a few days, but then after that she would be fine. Our hope is to sometime take the girls to Great Wolf Lodge in Williamsburg, VA and let them all have a blast. After we left the hospital we came back and let Emily feed the ducks, she was a bit nervous about it, afraid they would follow her, but mainly watched us feed the ducks.

She has been very irritable lately and gets upset easily! Its heartbreaking to see her cry so easily over something that we would not have imagined her to cry about or that she wouldn't have cried about just 2 short weeks ago. Today while waiting for the MIBG Injection she wanted to play with a little girl, well the little girl left and went back to her mom and Emily cried, and it came out of nowhere and Doug picked her up and tried to get her mind off of it. The little girl realized it and then asked Emily to come and play and then Emily was fine. It was heartbreaking to watch your own child cry about her feelings being hurt! She still comments about pain in her hip when you touch it, but is walking/running around with no problem.

Tomomorrow is MIBG day, Emily will have her scan at 10AM, and I am beyond nervous and scared about this day and I know Doug is too! Emily will rock it, like she always does and be such a big girl and sit still so she does not have to have the "white stuff". I have some major scanxiety going on right now but still trying to keep up the hope, Im thinking that is why I am still awake, because my mind won't shut off! The hardest part is also not knowing what is coming next, what the treatment looks like or anything and where tomorrow will bring us. Please send us lots of love, thoughts and "HOPE" as we go through these next few days.

A big huge thank you to Burkeville Baptist Church for putting on a fundraiser for our family and to all of our family and friends who were part of such an amazing event. We have no idea what this next year will bring us with treatment, but as long as all of our family is together is all that matters.

Jessie and Brianna, I miss and love you girls both so much! Hope you both have a good week!

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

1 Week before Philly

Thank you so much Amazing Hats and Sue for the beautiful hat

Its Monday evening, and I just wanted to update...first Facebook updates:

February 12: Tomorrow Emily has clinic. We are thinking that her hemoglobin is low because she has had a lot more downs than ups the past two days. Just very low energy and tired and clingy to mommy!

We also have 1 week from today before we head to Philly and we prepare for a week of scans, with surgery to remove hickman line and replace it with the port and also a bone marrow biopsy.

February 13 @ 1230PM: Emily is still here at the clinic saying she is tired! It will be a long day here because Emily needs a blood transfusion! Platelets went to 59, small increase but better than decrease! ANC is still a little low but ok! Have a good day!

February 13 @ 8PM: Emily received her "super blood" (blood transfusion) and has much more energy! It was a long day at the clinic. Emily has been complaining of pain here and there, but we are hoping it is nothing!


Over the weekend, Emily had a lot of ups and downs and she was pale a lot over the weekend. We could really tell Saturday night, that she just wasn't normal, so we figured her hemoglobin must have been low. We thought we might be taking her to the ER to get a transfusion if it has gotten any worse.

Sunday afternoon Emily complained that her knee/leg hurt were she has tumor and of course Doug and I both worried. Tonight she has complained that her right hip hurts. Again both Doug and I worry, but scans are a week away from tomorrow. Our hopes of course is that it is nothing. But as a cancer parent each body pain is scary.

Yesterday I received an email from another family whose daughter has NB where they had received an email about a family whose son was diagnosed with Neuroblastoma here not far from us and if people wanted to send post cards (I am keeping this information confidential because I don't want to spread information about a family unless they would like their information out there). Doug and I were able to locate them and contacted them just to let them know that we too are a NB Family and we are here should they need anything at all, their son was at our home hospital. While I didn't hear back from them, both Doug and I thought a lot about them.

Emily had clinic this morning to have her counts checked and her thyroid levels. As we suspected, Emily did need hemoglobin, because it was low. Her platelets went up by 4 to 59, while it was a small increase it was still so much better than a decrease and ANC went up a little bit, but still low.

We knew the family was at the hospital, however we didn't know if they had left yet, Doug thought I should stop by and introduce myself and just let them know again that we are there should they need anything. I will be honest I tried to find any reason that I could to talk myself out of it, mostly because I was nervous...I was nervous knowing how overwhelmed that they would be with their son just being diagnosed of this fearful disease, being shy about meeting someone new, and then walking back on the 7th floor of the hospital where we have not been since June of 2011. Thanks to my husband, it was a nice gesture to introduce myself and afterwards I felt better letting a family know we are there to help when being introduced into a world of the unknown. The world of cancer is scary and there are so many unknowns. I walked onto the floor and the fear I was worried about, my nerves and everything that we had gone through on this floor overcame me, but I didn't turn around. My husband was right...while we didn't have anyone immediately to talk to about NB, eventually we did and even had texting friends that were there anytime of the day and they were amazing and very helpful, and I knew it would be helpful for them. I also knew if they didn't want to talk, that they would have asked us to leave the small gift and we would have been ok with that. The security people had not changed and they remembered me and said go ahead mom, and I had to let them know I don't have a child on the floor, I am here to visit another child, she was confused and of course I explained. Dad came out and I introduced myself nervous and the pain and fear was in dad's eyes, I could see it and the reality of what I was nervous about hit, everything that they were going through just hit me and were flashing in my head when Emily was diagnosed. Dad took me back to meet his wife, and happily I could see that they were getting ready to leave (for home after 11 days of being in a hospital hearing all the things that they never wanted to hear), but I did talk with mom for a little bit. Mom too, I could see the fear, the pain in her eyes for their son, all of everything that I remember Doug and I going through 14 months ago, which all of the sudden seemed like yesterday. Doug and I sat on that same floor for 12 days and heard those same words that they heard, it all flashed before me. For parents who never cried before, they cried before with fear and worry about their child and all of this flashed before me as I was walking back through that hallway. I was strong, because they were receptive to my coming, and I held myself together knowing that they needed me too. I saw the nurses, again most of them were the same, that were there before, nothing had changed except for other families (newly diagnosed or those I have never seen before) going through the same things that we had gone through and the fear and worry about their children. I was happy that Doug pushed me to do this, because at the end of the day, it was the right thing to do. Mom was receptive to my coming as I explained to her that I was really nervous and thought this might be too much for them, but she was glad that I was there and that she knew she would have lots of questions and asked a few while I was there. I saw their sweet little son and I just wanted to hold him as he was crying wanting his mommy (just because I remember our sweet Emily being this way), he was beautiful in all ways and all I wanted to do was say that I'm sorry and sorry doesn't even touch what they were/are and will be going through, or what we are going through or what any other cancer parent is going through. Mom and Dad I just want you to know that Doug and I there for you to help you in any way that we can, to answer any questions that you have, we are here 24/7, please don't ever hesitate.

After leaving the 7th floor and getting into my van, I broke down. I broke down because I was glad that I had stopped by to introduce myself and just to let them know we were there, but also because everything that flashed in front of me. Again in the long run it felt good to be available to a family going through the unknown and going home today after 11 days thinking when they went in they wouldn't be there long and everything was ok.

Please be aware that families go through this everyday and oncologists are telling parents their worst nightmares several times a day, are you aware??. Today was a day that I needed, needed to get out there (and be more open then hiding behind a computer when we want to "give back" and honestly I feel that Doug and I were able to "give back" today!

Emily received her blood transfusion, and was a totally different kid, she got super blood and she had so much energy. During clinic she also had her thyroid levels checked since the MIBG treatment can cause a lot of thyroid problems. I called to see if the results were in after Emily was already gone and Elaine called back to update she said one of the levels were a little bit higher than it should be and the other was normal. She was going to check with Dr. Gowda to see if there was anything that needed to be done or just to keep a watch on it. So this will be one more thing to add to the list of worries, but we won't worry too much. We will send an email to CHOP just to have them be aware and if they think we need to do anything different.

The pains that Emily has complained about here and there have us concerned, but we have to hold up hope that it is nothing and just those things that every child deals with or just something else so simple. We do leave Sunday to head to Philly! Scanxiety has surely started if not already been there with the pending scans coming up. CHOP doesn't have any plans for trials for Emily yet, we were told... "We will need to take things one step at a time in order to decide what is the next best step for Emily. Emily's next disease evaluation is a couple of weeks away and we will need to use all of the information we have at that time to make recommendations." (this was from a few weeks ago). So all we know is all the trials that we have read and what Sholler said that she could do for us, so we are waiting to see what CHOP can do for us and our sweet Emily. Platelets are no longer an issue, so we don't want to hit anymore roadblocks, we just want something that will help Emily! So the pending scans have us both a bit a nervous about what they will show and how we will move forward. February 24th, while we are in Philly, we will also be celebrating 5 years of marriage. Anything that we have to do for Emily we will do, ANYTHING, ANYWHERE!

Update: I am still working on getting together care packages (bags for newly diagnosed families containing things like deodorant, shampoo and conditioner, razors, lotion, toothbrushes and toothpaste, hand sanitizer among other things to help those newly diagnosed families in the hospital) and they are coming along nicely! The stash is growing and we are excited to be "giving back"! The coupons that people are sending from all over the place, are so helpful and continue to be of huge help, so please keep them coming! Like I said the stash is coming along and I think when we come back from Philly we will be able to start working on those bags to take up to VCU for the social workers to give to newly diagnosed families.

Update #2: We have people asking where to make donations since some fundraisers are getting in the motion and I just wanted to update everyone and let them know how they could make donations and where:
Emily has accounts in her names at:
--Dominion Credit Union
--Wells Fargo Bank
--First Citizen Bank
****Donations may be made at any of those locations by giving Emily Hubbel's name and they will make sure the rest is taken care of.
--Through the website at www.emilyhubbel.com
--Mailing to PO Box 5383, Midlothian, VA 23112 where gas cards can be sent as well (which is definitely very helpful with the traveling)

Make sure you hug and kiss your kids each night and tell them how much you love them! Good Night!

6 Weeks Post MIBG Therapy

Emily making cupcakes with her cute apron from Sue

Tomorrow we have one week before Emily has scans to see if the MIBG Therapy was successful at CHOP. She is scheduled for MIBG Scan on Tuesday after the MIBG Injection on Monday with results from Dr. Mosse on Wednesday. Scanxiety is a severe understatement right now.

Emily had clinic today, and it was a long day at the clinic. However it was nice to be in the clinic and talk with the Joshua's while they were waiting for Meesha to have her bone marrow biopsy (http://www.caringbridge.org/visit/meeshajoshua) We had a feeling that she would probably need a blood transfusion come today since her hemoglobin had dropped so much prior, but we were hopeful that her platelets were coming back up on their own. However Saturday night, I looked over at Emily while she was sleeping and saw blood on her face. I freaked out and called Doug over. We saw some blood in her mouth, but wasn't sure where it was coming from, so we cleaned it out with a q-tip. Yesterday Doug saw a blood blister in her mouth on her tongue, but we thought maybe it was from her binky, we weren't really sure. During clinic we found that her hemoglobin had dropped considerably, so this will be her 3rd blood transfusion and we were shocked to find out that her platelets dropped from 31 to 6, so she was going to need platelets as well, 8th platelet transfusion since MIBG Therapy. Emily's ANC and WBC dropped a bit again, so we are still being very careful and making sure that Emily doesn't get sick or any germs.

Of course this brings a lot of concern for Doug and I worrying about her platelets recovering... I did bring this up with the doctor at CHOP by sending an email a couple of weeks ago. They emailed back with,
"The majority of patients treated with I-131-MIBG need frequent platelet transfusions following the therapy. Emily is now almost 4 weeks from her MIBG therapy and requiring platelet transfusions 1-2 times per week is not outside of the normal pattern. That being said, I hear and understand your concerns. Much will depend on Emily’s upcoming disease re-evaluations (as per the schedule below). We are always preparing for the “what ifs” so if indeed Emily’s MIBG scan in a few weeks shows that this therapy did not help we will have a plan for next recommended steps. If Emily’s scan is stable or better, it is likely that Dr. Mosse will recommend a second I-131-MIBG therapy and we would admit Emily to the hospital on 1/11/12 to receive that therapy on 1/12/12. We have many patients who go into a second MIBG therapy with low counts. We then re-infuse their stem cells about 10 days after completion of the therapy. If Emily is infused with her stem cells, yes that does limit some of her treatment options but is does not mean that she cannot receive any type of therapy for 6 weeks. Does all of this make sense? Please let me know if you have any additional questions or concerns."

So, at this point, we just wait to see how things go when she has clinic on Thursday and then how things are next week for scans. Right now we are working to locate a campground that is close by CHOP so that we are prepared should Emily be ready to do MIBG Therapy Round 2 and we have a place to go when she is done. This also helps with Brianna too, so we are hopeful to find a campground close by. If any of you know of campgrounds that are close by CHOP, open and relatively cheap, please email me. We also would prefer to be in our own area if we can because it leaves a lot less stress on all of us and also because of Emily's counts just to be on the safe side. Like I said if you know anything please let me know.

Otherwise Emily is doing great. She is eating well, playing and just enjoying no hospital overnight stays. We just continue to have clinic twice a week. We have noticed that Emily walks on her tiptoes and her walking has been affected by the radiation. Her hearing still seems to be fine and we really haven't noticed any other issues. She eats really well though, but not gaining any weight. She was 30 pounds when all of this started and today she is 27.8. For a 4 year old, Emily is very tiny and little, so we are always careful not to hurt her just when picking her up and things of that sort.

Send lots of love and prayers as we head into Philly next week for scans. Thank you so much for following our journey and keeping up with us as we charge on. Please give your kids hugs and kisses and tell them how much you love them.

Week 1 (Post MIBG Therapy) Update

We have been home for a week tonight from Philly and it is nice to be home. The last time I updated, I indicated that Emily had a MIBG Scan before she left Philly, many just call this a "super scan" because it only takes 15 minutes and because she has so much iodine in her body that it won't take as long. The iodine in her body would quickly attach to the NB Cells in her body and would show on the scan and this is what they were looking for to make sure it was working. Monday we had received an email that indicated that they had received the results back and the "super scan" showed 2 others spots which had uptake in them. These two spots were in her left tibia and her upper abdomen. While they didn't make a big concern of this, because they expect to find uptake in other spots when they do the "super scan" what they want is when she returns in 6 weeks that the Therapy is working and the spots are either smaller or gone. While I hate to hear that she has others spots and they worry me, I am trying to realize that the MIBG Therapy is one of the most effective type of therapys that there is and we just have to know that this will work for Emily. The time home has consisted of Emily being extremely tired and really not eating much.

Tuesday she had clinic and we thought for sure that she would need blood, because she just seemed so tired and no energy. Even the nurse thought she would need blood but then she looked at her palms and said they were not white. When the CBC came back, it was great actually, her hemoglobin had gone up from 7.9 to 11.2, however her WBC and platelets were dropping. So, they sent us on our way wearing a mask just since her ANC and WBC was dropping.

Friday she had clinic again, and the past few nights before clinic Emily was asleep early and still very tired. Just extremely exhausted and would get winded very quickly. She also lost 2 pounds within a weeks timeframe, and Emily can't afford to lose any weight whens he is already underweight. CBC came back with hemoglobin still 11.4, platelets dropped to 20 and WBC same as Tuesday, ANC is going down just a bit. Emily had to receive her first round of platelets since the MIBG Therapy. They say this is normal, because many kids need platelets normally within 2 to 3 weeks, however with Emily she received MIBG Therapy very soon out of Stem Cell Transplant, so all of her counts were still on the rather low end when many other kids are much higher. Dr. Gowda said that the low energy levels and not eating much could be side effects from the actual radiation she received at VCU. We were kind of surprised it is just now hitting her in the past week or so, but the extreme exhaustion and not eating is what has us concerned. She does still seem to have the cough that she had when were in Philly when she received MIBG therapy, but doing ok.

Once Emily's ANC hits 750, they will either give Emily the Neulasta shot. By doing this, this is in hopes it will help get her counts back up. Should her counts not go back up, we may have to give her a bag of Stem Cells.

Friday night Emily was asleep by 630PM. Saturday we decided to celebrate our Thanksgiving and get up and make Turkey and all the fixings. Thank you to Whole Foods and the Goss' who gave us a gift card and we had a great Thanksgiving together as a family and even enjoyed having family over while Emily's counts are still ok. Emily enjoyed helping making the turkey and everything else. She loves to cook and keeps saying she wants a Kitchen Aid Mixer. It is amazing that she loves to watch the cooking channel. Thanks Dennis and Kim for spending the day with us. Today we had a pretty laid back day and Emily had a playdate come and hang out with her today, thanks Jessica and Aydan, we enjoyed having adult interaction and all the kids enjoyed having someone over to play. We are thankful that her counts were still not immunesupressed and she could have a friend over, even though she was tired. Doug and I were both pretty surprised that in the middle of playing, she stopped and came and fell asleep. When she got back up, she played for a little while, but not long after they left, did she fall asleep and is out for the night. Emily did continue to say she was hungry several times today and we made several different meals hoping that it would spark her to eat, but she didn't eat much. She did eat a bowl of mac and cheese that I made yesterday for Thanksgiving, so that was good that she did eat that. I'm hoping that her energy levels come back soon, because this is something that Doug and I are just not used to, because with all the treatment she has been through, we have never really had this issue before. So, it is really hard to see her so tired and even look so tired and not eating. We look at her and she is extremely thin.

We will continue our twice a week clinic checks to check Emily's counts and see if any transfusions are need or anything else. Friday we did ask Dr. Gowda why they didn't use SSKI at VCU and he explained that the iodine that they use, they didn't have to. After talking about how Emily was feeling and if we needed to do anything additional, he said he wanted to check Emily's thyroid levels again just to make sure they were ok. If we have to, we will start Emily on fluids and we have started her on Periactin which is supposed to help get her to eat. We also told Dr. Gowda about the two other spots that the "super scan" found and he was really surprised about the upper abdomen spot that was found.

Overall,. it is great to be home and enjoy family time. Doug has started decorating outside for Christmas, however we still haven't gotten the Christmas tree out.

Continue to send your thoughts and love and hope that Emily continues to do well and does not get neutrapenic and she land back in the hospital with fevers. So, we just continue to make sure that she doesn't get sick or anyone around her is sick. We continue to send out our thanks and love to so many who continue to pray for us, send their love and thoughts, gas cards and donations. Our hearts are just amazed at the generosity of those that many we do not know and those we do know. So, thank you so much! We are hopeful that her counts stay up this week and she continues to do well!

Give your kids lots of hug and kisses!

Fuck Neuroblastoma, Fuck Cancer

First let me say if this offends any of you, you will just have to ignore it, because this is what we feel and honestly using a cuss word is the best way to describe it and get out exactly what we feel. Oh by the way, and if you want to delete me as a friend from facebook or not read this, honestly you know what, FUCK IT. I’m done worrying about who I have offended, done worrying about what others feel, this is about us. This website is about our daughter and her journey through fucking cancer and what she deals with and we deal with on a daily basis. This website is about how we feel about what she is going through, so either take it and read along, or don’t.

Maya, Ronan's mom, from http://www.rockstarronan.com/ says it the best!

I’ve tried to take some time to swallow this and actually take it all in. As parents, I always thought we would be getting Emily ready for a dance recital and what she will wear or even playing soccer or something else, but I never thought as parents that Doug and I would be talking to each other about this word we learned about in December called fucking Neuroblastoma. So, yes in December we had heard of cancer, but never Neuroblastoma. Our whole lives changed when that word entered our lives, for good and for bad. In laymen terms, Neuroblastoma sucks. Its heartbreaking that my 10 year old, I can’t always be there for her when she is going through things such as the dentist or normal things of that nature, but her dad takes care of it, but as a mother its hard on me, that I can’t be in a million places at one time. Its heartbreaking that instead of potty training Brianna, Doug and I are daily just trying to keep up with life, the house, and Emily! Brianna knows no different than the hospital and this to her is just normal, that sucks that a 2 year old thinks the hospital is normal! WTH. And it is even more heartbreaking that Emily has had to endure 2 painful surgeries, 8 rounds of rough chemo, the side effects, a line that goes directly into the vein of her super vena cava near the atrium of her heart., weekly dressing changes, radiation, several times of being sedated, scans, bone marrow biopsies, transfusions and many other.
Today as parents, Doug and I are sitting on the edge of our seats, wondering what the followings days will bring. Yesterday we got the dreaded call from CHOP on the MIBG Scan, the one we didn’t want to hear about. The 4 spots in her legs are still there and there have not been any changes in those spots, and the spot in Emily’s skull that VCU pointed out is still there, but it is still as CHOP said, “Is it NB or is it not”? However, yes, however came up. The MIBG scan found something else, in her lumbar spine. The spot in her lumbar spine has never showed in any of the scans before and they are seeing it now. She said it is really small, but it is not impressive. Dr Bagatell did not even see it when just looking at the scans, however 2 of the top radiologist see it. What does this mean right? Well, at this point, antibodies that Emily was to be admitted on Monday for, has been put on hold. Tomorrow we were supposed to start giving Emily her GM-CSF shot at home (for the next 14 days), that too has been put on hold. They are scheduling a MRI for Monday to further investigate what the spot is. If the spot is NB, then Emily is considered “progressing” and she will not qualify for antibodies treatment and we will be discussing what to do next, what treatment should be next? If the spot is nothing (which is what we hope for), we move forward.

As parents, this has broken our hearts, fearing what tomorrow brings. Last night, Jessie had a parent/teacher conference, I was there physically and spoke up, but I don’t feel I was really there. I came home and made dinner for the girls, but I barely remember doing it. Last night Doug and I really didn’t talk, just took care of the kids (whom both fell asleep at 10 minutes to 8, very shocking!), talked to Jessie when she got home from dance for a little while and then all the kids were asleep. Doug and I feel out there, mindless with our thoughts all over the place, there was a lot of silence (I mean really what the fuck do you talk about when you hear this?), the silence was time for us to take things in and I guess you could say regroup, not that I feel we have regrouped, because I still haven’t regrouped from when she was diagnosed. I can’t tell you how hard this is as parents who want nothing but the best for their kids, and when the call came in at work yesterday, I broke down in tears when I hung up the phone, and then getting into the van last night with another breakdown. To watch my husband break down in the laundry room, and just be there to rub his back and we be there for each other. When I came in the house, I just held on to Emily for a little while with tears running down my face, she is such a cuddle bug. I later watched Doug do the same thing. But I don’t understand why any of this is happening and what we did to deserve this, but it fucking sucks.

We will leave Saturday afternoon to head back to the campground for Emily’s MRI on Monday, from there we have no idea what to expect. Right now we need lots of love, thoughts and support to get through this next part of this journey.

Home for a Few Days

We are home tonight after being in Philly for a few days! We are exhausted because the last four days have been nothing but running from early morning til night! Emily was even exhausted and fell asleep last night at 8pm and I don't know when the last time she ever did that!

We will be leaving again Saturday afternoon to head back to start antibodies! I still plan to give you all an overview of antibodies because so many have asked, but I'm exhausted tonight!

The information that we know as of right now is that the CT scan is clear, bone marrow is clear, HMA & VMA numbers are 14 and 29, just a little bit up for Emilys age, and I will need to look up to see what they were before and labs are good, EKG and echo were good! We did have her thyroid checked because Emily was never given sski drops to take before an MIBG and we were worried about that! Her numbers are a bit high not too high that she is concerned but concerned enough that she wants to watch them! We dont have a full report on the Mibg because she wants to go over them with the radiologist tomorrow so we should get a full report on them tomorrow! They need to review outside Mibg scans to inside MIBG scans!

That's all we know for now! I wanted to keep you all updates, and I'm exhausted! I also have received a few emails wanting to know what people could do to help with our traveling back and forth for the next 6 months and honestly the best thing would be donations, gas gift cards, grocery gift cards and restaurant gift cards! We get a few of these emails a day and I don't always have time to let everyone know and this would be the best thing that would help us!

With many asking how & where to donate, here is the information:

1. All donors may mail funds to the account at: Dominion Credit Union PO Box 26646 Richmond, VA 23261 Write "Emily Hubbel" in the check memo. Dominion Employees may go through the bank.

2. Clicking the donate now on http://www.emilyhubbel.com

3. Checks can be mailed to our PO Box with Emily's Name on the check to PO Box 5383, Midlothian, VA 23112

Long Day #1

Its hard to update via the phone because we dont have internet here at the campground! It's still great to have somewhere to stay that is taken care of! We are exhausted from traveling to and from, running around and appointments, so early nights for us!!

Today started fresh and early of 5 AM and a long day at the hospital!

First was labs, HMA & VMA and bone marrow aspirate and biopsies and while she was under they changed her dressing! It was nice to meet another mom of a little girl that we follow! The bone marrow aspirate went ok but Emily had a hard time coming off the propofol again today and was very irritable and crying! The nurse was great and gave Emily a small dose of morphine and that helped take the edge off and calm her! Dr bagatelle was great as well coming by and checking in and everything! We were in recovery a lot longer than expected, then she needed her MIBG injection, get her CT prep and then about an hour talk with the doctor about antibodies! I will talk about that in another post to tell you about it! We finally left the hospital by 4pm exhausted to head back to campground! getting back here by 630 pm, so long 12 hour day is definitely exhausting!

Tomorrow is another long day with her scans and several tests! She said all the results she should have Wednesday so we can meet and talk about those and then head home! The only result that won't be back is the HMA & VMA because that can take 4-7 Days!

Night all send your love, thoughts and prayers for Emily! Clear scans!!!

Finally...

Its been a long few days while we waited for CHOP to review Emily's scana and results that were sent. While waiting for the information to be reviewed, I had seen on a 9-20 CT scan that was done while Emily was inpatient in the BMT unit, that said "Possible new bony lesion in inferior pubic ramus on the right!" and if you all remember they did this CT because they thought Emily had pneumonia. No one had ever talked to us about these results, it just so happened that I was looking through everything and read that note.  I emailed Dr. Gowda to see what his response was and also emailed Dr. Bagatelle just to let her know that we were concerned.  Dr. Gowda called me a few hours later and said he had to call the radiologist concologist and was advised that this spot has been there since the beginning and it was never noted in any of the CT scans before, however they were going to add an addendum to indicate that information, and that he also indicated this was a non specific site and that he was sorry it was not indicated prior. 

The wait from Dr. Bagatelle was difficult, because all we could do was continue to think the worse of what we had been advised.  Having your child's doctor, the one who told you almost 1 year ago that your daughter had cancer, that she is progressing even after 8 rounds of chemo, but that they could not indicate how much, but there was progression, was devastating. 

Tuesday night we finally received the call from Dr. Bagatell. Both Doug and I was pretty nervous about the phone call, our nerves and anxiety was pretty high.  She gave us bad news but good news.  Bad news first... She said, "yes Emily still has the spots and typically we would like to have her clear of spots by time she starts radiation, but not all children are typical." Good news next..."From previous scans to most current scans, our senior radiologist oncologist does not see progression.  We also no longer look at the brightness or dimness of the scans, we look at the number of spots and any obvious growth." So, really the bad news, was what we already knew that Emily still had the spots and they were unchanged from beginning, however they do not see any progression or changes.  She also reviewed the CT scans with a senior and said the oncologist said: "She did not think it is something to worry about.  She noted that that area was not always completely imaged on all the other CTs, so the lucency that was commented on could have been there before.  She also reads MIBG scans, fortunately, so had the expertise to look for that particular spot on MIBG.  It did not light up, so her recommendation was to follow it over time."

With all of that said, Doug and I finally feel a bit at ease.  We feel at ease that we just follow this spot that was seen and that she was confdent with her responses. Dr. Bagatell recommends us to move forward with radiation.  After radiation if the spots are still there, we will still move forward with antibodies. Antidbodies should clear them up and like said she if they do not, there are other things that they can do, as part of other clinical trials that CHOP offers.  She is going to have the radiation oncologist contact Dr. Song at VCU to go over the sim and Emily's radiation that is scheduled next week, and if they feel it would be better to have radiation there, we will go there, but if they are comfortable here Emily will start radiation on Monday. 

Last, after all of the discomfort and not 100% information from VCU, we feel that it will be better for Emily to have her antibodies done at CHOP.   Antibodies can be deadly if given too much and not effective if not given enough and there are a lot of side effects from the antibodies and it is very important that anyone that is going to be in Emily's care knows what to do should a situation arise.  We as parents don't feel comfortable enough to feel that VCU could handle if something were to happen.  Dr. Bagatell is working on a schedule for Emily to start antibodies after radiation.  She said that they like to have the scans done by them and after scans start the first round of antibodies.   Doug and I also feel at ease with moving forward with CHOP should there be that chance that Emily is not clear after antibodies because they will be familiar with her and her spots. 

Radiation should be finished on or around November 1st and then after that we will be heading to Philly! Sue, be ready for us, because we can't wait to meet you!  You are such an amazing woman!! Dr. Bagatell is working on a schedule,. so we will have a better schedule coming soon and know what we are doing moving forward.  

We have 100% confidence in CHOP and their care of Emily.  What Doug and I just went through with these scans because of VCU is not something that we ever want to go through again.  We have confidence in CHOP in knowing what they are reading and what they are providing to their patients (parents) and that it is accurate information. 

Thank you everyone for all of your thoughts, prayers, love and care, gas cards, and help while we went through this devastating period of time. If I could sit and tell you all that Doug and I felt and went through during this waiting period, I would, but I can't.  I don't want to ever have to go through that again and I know damn well Doug doesn't want to either. Neuroblastoma is a nasty disease and we have to kick it now, and I know that with Doug and I together, Emily can kick this and live a happy and healthy life.  Please continue to leave your thoughts, prayers and love and care, gift cards and gas cards as Emily charges on into the next part of her treatment.   Thank you, thank you and THANK YOU!

I am really happy to be posting a better post than the previous post, our hearts, anxiety and thoughts are resting and finally at ease.