Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Sunday, November 27, 2011

MIBG Therapy Round 1 Complete

It probably was the longest 4 days in the hospital that we have ever had in the hospital since the beginning of time. I know it sounds crazy, but it really felt like that.

Wednesday Morning started early heading to the OR to get propaphol to get the foley cathether placed in. When she was done and started to wake in the OR area, she started to flip out and I told them that they needed to get her to her room before she flips out and pulls out the foley and then they will need to place another one. So, they quickly moved her back to her room and gave her Versad and was still very whiney. The doctor thinks she received too much at one time and this caused the crying the way she was. However in order to start the MIBG Iodine 131, Emily had to be calm. We decided on Ativan, since we had used this in the past for stem cell and it seemed to work well for Emily and she didn't have major side effects to it. During the time of getting the medication adjusted and getting Emily used to have to staying in her bed due to the foley (which she was crying that it hurt and she felt like she had to go to the bathroom and wanting it out) we had to meet with the Nuclear Medicine Safety Specialist who spoke to us about the precautions of all the do's and don'ts. Wearing booties on our feet in the room, to wearing gloves and a gown when we needed to touch her, to things in the room, to wearing a meter at all times in the room. If anything in the room had to much radioactivity it would have to be thrown away. Anything that Emily touched or worn would go in the trash. Thank you Amanda for getting Emily several things to do in the hospital along with night clothes that we didn't have to worry about bringing from home and throwing out. The whole thing of things being used in the room scared me so much, that I would never get on the computer in fear that I would have to throw away my computer. Once the ativan settled in, they were able to get the MIBG IV iodine started and once this started, the precautions started.

The cart that was rolled in with the MIBG iodine was rolled in all covered up and the IV fluids in a lead box. The foley where the fluid was collected was also placed into a lead box right besides Emily's bed. They felt it was best that Emily poop in a pan on her bed, however Emily wouldn't have that, so she would just get up and go and then need to get right back into bed. Around her bed they placed lead walls and we were to stay behind those lead walls. Emily was calm during her injection and once the injection was completed, Emily started to cry for my arm. Emily likes to have her binky and rub my arm. At one point the nurses thought it might even be better if I stay out of the room all together if Emily was going to be like that.

The injection of the iodine was painless, and Emily didn't even know it was happening except for the the wrapped cart, that was taken out when done. They checked her level indicators and Emily was at 21. We were happy with this number, because this hopefully meant it would be quick and time out of the hospital would be fast.

The time wasn't fast at all, it was the slowest that I have ever had with Emily in the hospital. The first night after the injection on Wednesday was possibly the longest night because she was up all night crying that she wanted me to lay with her, for her to rub my arm, several times I would have to walk out of the room just to collect myself and then come back because it was hard on me not being able to give her what she needed when she felt lonely in her bed. Also she had a fever over night which threw in extra medicines of cephapim every 8 hours and gentamicin aside from the zofran, ativan, SSKI drops and the bladder spasms medicines.

Thanksgiving Day her levels went down to 9.5, they were shocked at how quickly they went down. I was often trying to get Emily to drink something to help get the iodine out of her body. The iodine in her body was to leave her body quickly and only attach to the parts in her body that are NB. We were told before this started that when she is done and has her MIBG to see if it attached to the NB in her body that we may even see where she has NB in other places in her body that we were not aware of. Emily's MIBG was schedule for Friday at 3 PM because it had to be at least 48 hours from the injection.

Thanksgiving normally is the start of the holiday season, but it honestly didn't feel like the holidays are approaching being in the hospital and set with a new type of therapy to try and rid NB from Emily's body. Actually the holidays are hard this year, and the mood isn't even there at the moment. We were all about the holidays last year and then we received the devasting news. As the day went on, my friends from VA ordered a Thanksgiving dinner for Doug and I from City Tavern, so Doug went and picked that up. It was great food and we really appreciate you guys doing that. But it was hard to sit in the Ronald McDonald Room down the hallway and eat a Thanksgiving meal and our kids not be apart of that meal with us. While we know that we will have a Thanksgiving meal at home with the kids, it is still hard and then to read people's updates on facebook, how their lives are normal and they are moving on and putting up their Christmas tree and enjoying the holidays with their kids. It sucked actually!

Thankfully Friday morning Emily's levels were at 3.2, and she would be released to go home. However they had to do a CBC before she was released and the MIBG at 3PM. The CBC showed her hemoglobin dropped from 9.7 on Tuesday to 7.9, so they went ahead and gave her blood. During the transfusion she spiked a fever which caused for another set of blood cultures and stopping the transfusion. This all happened right before the MIBG, so they felt she has received enough blood and would be fine.

The MIBG was the quickest one we ever had which was nice, because Emily didn't want to do the scan at all. We are not sure if there are other spots or not, because we really couldn't tell, however we could definitly see the spots in her femurs and iliac bones. So, we just wait to hear back the results of the scan. After the scan, they had to scan the levels of anything that we were taking out and make sure that it didn't have any radioactive levels in it and if they did, they couldn't go. I thought it was interesting that they had to follow the rules of the NRC (Nuclear Regulatory Commission). Thankfully everything that needed to come home with us didn't have any problems and we were able to leave. Instead of heading home, we decided it would be best to stay in New Jersey at the campground so we were close in case anything happened and Emily had another temperature and we would need to take her in.

Emily was absolutely miserable leaving the hospital, she was very whiney, upset and if anything didn't go the way she wanted it, she would cry. This is pretty much how the stay in the hospital was, but even moreso on the way from leaving.

I am thankful that we had the campground to come to, because Emily has been very weak, miserable and very tired. Last night she was asleep by 530 from extreme exhaustion and then woke up about 10 and was up for a little while. She hasn't had a temperature since being out of the hospital, but she isn't herself. She does have a cough and some cold sores on her lips which got really chapped while being in the hospital.

Today we are on the way home and it has been a long day on the way home with traffic because of the holiday weekend and everyone else driving. We are ready to be home and sleep in our own bed and i have to be honest here, I am ready to head back to work tomorrow. I am ready to have all the kids together, Brianna home and Jessie home and at least try to be somewhat normal for the next 6 weeks that we are home before we have to head back for another MIBG to see if this therapy worked. Emily will have to go to the clinic twice a week to check her counts at VCU and we will be awaiting a call from CHOP on the MIBG results.

Hope every had a great Thanksgiving. We are thankful to all the wonderful people out there who have been so kind and helped us during this time. Continue to send your love, thoughts and prayers that this therapy does what it needs to and we can move forward to Round 2 and then back to antibodies where we were supposed to be.

Have a good night and I hope to update as the week goes and how Emily does with her counts. We are worried about her hemoglobin and platelets and hoping that these don't become an issue, but only time will tell how that will go.

Wednesday, November 23, 2011

MIBG Therapy

Its crazy the ride that the Hubbel family has taken and now the roadpath that we once knew is no longer in the forefront and we are taking a different road. Our lives in the past 3 weeks have been wild from taking Emily to CHOP to get her treatment for antibodies to going for scans and then going to she doesn't qualify for antibodies at the current time and her disease is considered progressing and she now is under a different regiment of treatment.  Hopefully this treatment won't take us far off and we will be back to the antibodies and this will be over.  But for now, we just take one day at a time and deal with what is in front of us. 

Yesterday Emily had to be at the clinic to be triaged, lab work, and for us to talk with Dr. Mosse and the Nurse Practioner about the process of what is to  happen the next few days.  Some things that we should expect and what will happen. We were able to take some time and get Emily a late lunch before being admitted and have some time together as a family! I have to tell you all, we miss our kids and them being away from us.  Emily is such a great eater, so we enjoy having family time eating with her.  It is always amazing to hear that many kids don't eat well, we have never had those problems unless she was in for chemo.  But Emily is a great eater, and we are so thankful for that. 

At 9 AM today, she will be undergoing general anesthesia and will have a foley catheter placed.  It is a quick procedure, but she is not going to like it one bit.  The catheter is placed because the radiation that she will be getting later today by IV will be so toxic, that you don't want it to sit in the body, it needs to come out, so it will come out through the catheter.  They will have the foley catheter go into a lead box that is liked that will be emptied a few times during the day.  This afternoon when Emily receives the IV of the MIBG therapy, she will be in the bed and will not be able to get out unless to go poop, but they would rather her do that in a bed pan. She will be behind a lead wall which will be around all sides of her bed, there is plastic all over the floor, door handles, the phone, toilet, anything that can be touched by Emily.  Even the led wall ares in plastic. Once she is given the IV, only one of us will be allowed in the room at a time and we will be wearing a meter that will monitor our radiation levels that we have and anything that she touches, will then have to be thrown away.  When we need to touch Emily, we will have to wear gloves and cover up.  We will learn more today about what we need to be aware of and things that need to be done.  I do know that the nurses will not come in as often, and we will have to change the bedding, give Emily her food and do all the most things that the nurses usually do.  They will still do her vitals and take care of her pump, but everything else will be up to us. I think the next 3 days are going to be more of a boredom for not only Emily, but us as well and ready to get this part of the process done and over with. We are nervous about her not being able to touch us because Emily loves to cuddle and touch, so we are really worried about that, but they will be giving her verset (don't know how to spelling) which should hopefully calm her and she is able to handle it. That is the biggest thing that we are nervous about.

Once Emily's levels reach 7 she will be discharged.  We have been told 7 days from today is when we need to worry about her contact with mainly her younger sister and that she she sleep in her own bed.  When she is discharged she cannot go to the Ronald McDonald House, so we will head to our camper for a few days and then head home.  After this Emily will have 6 weeks of hometime, and work will be back in order and Emily will only have 2 days a week of clinic to check on her counts and see if any transfusions are needed.  CHOP will be in constant contact with VCU to advise of what needs to be done and CHOP will call the shots, which is exactly how I want it.

The process should be starting soon and I want to post this so many of you know what we are about to go through. The past few days have been exhausting in so many levels that I haven't been able to post.

With Thanksgiving being tomorrow, there are so many things that I am thankful for in no particular order and felt that I should share. I'm thankful for friends and family who have been there to assist us in things that we need, take care of our kids if need be and things that need to be done while we are gone from our home.  I am thankful for our landlord who has been amazing during this journey!  I'm thankful for CHOP and the amazing doctors and nurses who know what they are doing and are confident in their work.  I am thankful for people, friends and family who have made donations, gifts, fundraisers for our family!  I am thankful for my job who have been beyond amazing through this journey and even allow me someone to talk to when I need it. I am thankful for a husband whom I love so much is such a great man and a wonderful father.  I am just overall thankful to have 3 wonderful kids who mean the world to me and would do anything for them.  I am also thankful for other NB moms who have been through this process (not just the current, but the past and the future) who has been there to answer questions for us anytime of the day or night and many of the moms who even text or call.  It is nice to have others who understand to talk to or even ask questions to.

Send lots of love and thoughts Emily and our way that the process is easy and goes quickly and Emily can handle this easily! Please love and hug your kids.

Happy Thanksgiving

Thursday, November 17, 2011

MRI Results

I've sat here for a while now trying to figure out how to write this post and I feel blank and nothing comes to me to write.  First, I never wanted to write this damn post and that the day we had today what not what we wanted. But what we have learned is this disease is never something that we have wanted to write about and not what we wanted and everytime what we hear, SUCKS!!! What I do know that it is important that everyone we know spread the awareness of childhood cancer and tell everyone about Emily's page at EmilyHubbel.com and her facebook page. Tell everyone you know, and have them share about her. 

When we arrived this morning at CHOP,  our anxiety and fear was building and our minds thought the worse but neither of us could actually say it outloud. We even asked each other last night while I was working what we thought and neither of us could say and all we thought was, "I don't know!" We arrived in the triage and Emily's was getting her vitals down and I saw Dr. Bagatell and Dr. Abby Green, both were saying HI and talking with Emily!  When finished we went into the playroom so the girls could play and then Emily had to go to the bathroom, and when I came back, Dr. Green was telling Doug that they were going over some other images to show us.  At that point, we knew, we knew what that meant.  It was important to us that Child Life be available for the girls and they not be in the room while we were talking about what was going on. So we were thankful they were there and took care of the girls. Dr. Bagatell started to go over the images and mentioned the spot in the back of her skull.  She said at this time we are just going to lay it to bed and not call it NB, but we are going to keep it in the back of our head and continue to keep a watch on it. She showed us the previous MIBG from VCU and the current MIBG and what the difference was as in the spot that they saw on the lumbar spine. She showed it to us and it was apparent when she pointed it out and then showed us the previous MIBG and we couldn't see it.  We asked if the machines could be different and that is why we are seeing this spot and VCU wasn't.  She said it was a possibility, but she couldn't call it that.  So, she pulled up the MRI that was done in December when looking at the spots in her legs. She showed us where she could see the spots in her femurs and iliacs.  She then pointed out where the picture of the MRI caught the back of the lumbar and there was a tiny faint spot.  No one talked of this at VCU, because it didn't show on the MIBG.  The MRI came back positive with the spots being well apparent on her L4 on her spine and she is now calling it impressive. The spot from previous MRI in December til now, the bony lesion is much bigger.

So we asked, what does this mean? She said well we tried to find a way to make Emily still be apart of the antibodies treatment, but no matter what they tried to figure out to get Emily in there, it didn't work out, it didn't seem right and she said you all came to CHOP to get the best treatment, and we feel in our hearts that antibodies is just not for Emily. No matter how they looked at it, they said Emily is progressing!  What are our options?? She walked through our options, low dose chemo, MIBG Therapy and the HU14.18 Antibodies linked with IL2, but she said that it was closed.  She told us she called VCU to see what Emily had left for Stem cells if she were to need a rescue, she has one bag left.  She called the COG to see if there was a possibility that Emily could be squeezed in for the HU14.18, and she could not, it was closed for a safety reason where they have to gather their data and it could possibly be open in a few months.

What does this mean in reality?  It means that Emily has progressed, she said there was no other way to call it.  At this point, the mission is not to find a cure, but to have her remain stable, meaning we don't want this to spread, we need to start to do something as soon as possible to see what will work. She said we can't feel the "Would have, should have, could have" because she said we did everything that we could and we did it right.  She said some children just don't respond and Emily was one of those. Our hearts and minds say the histology means absolutely fucking nothing and whether hers showed non amplified and favorable, it really doesn't matter.  She said Emily is a different case for them, because they don't have very many that don't make it to antibodies because of progression, it is normally after antibodies that they are progressing.  She said they had one about a month ago, but they don't have many that fit this.  She sat and spoke with Dr. Grupp, Dr. Mosse and herself about the situtation and what they felt best.

Dr. Bagatell was rather shocked of what Doug and I knew and how much reading we had done.  Most things she didn't have to even bring up, because we brought them up for her, Doug I love all the reading you have done and kept me abreast of it.  Doug even asked about the ALK inhibitor gene and did Emily have it?  Emily does not have it, which means that it was not carried from me and she would not carry it on. She was shocked that Doug knew about this.

So, we walked through the low dose chemo.  Low dose chemo works for some children, but they found that many children that it does not work for. She said the low dose chemo could be something to use when needed to bridge to something else as in another trial to keep NB growth at bay. Dr. Bagatell runs this trial at CHOP and she knew the ins and outs and numbers on this one. Dr. Mosse came in and talked to us about MIBG Therapy since she runs that trial at CHOP. We understand that some children after MIBG Therapy have a hard time recovering their counts and especially their platelets and if their platelets are too low and are transfusion dependent that they don't qualify for other trials should Emily need another trial.  This is why they would have never offered the MIBG Therapy had Emily not had a bag of stem cells.  If the child does well on a round of MIBG Therapy and the next set of scans show improvement, they will do another round.

What does CHOP think is the best for Emily? They feel that MIBG Therapy is the best at this point.  She said MIBG Therapy is very effective when it works for children.  At first it was thought that MIBG Therapy would not be available if we chose this trial until mid January and if that was the case, we would need to use the low dose chemo to bridge till that came along. However when Dr. Mosse came in, she said because next week is the holidays, it is open next Tuesday and then the next opening would be the week of Christmas.  We don't want Emily in again for Christmas.

How are we feeling? Devasted to say the least and heartbroken.  What makes this even harder is that Emily will not ever qualify for CH14.18 antibodies and this is supposed to give an additional 20% of life.  Dr. Bagatell says to "never say never" but that she doesn't see that it being a possibilty, but the possibility of the HU14.18 yes. Doug and I are having a hard time talking about this to others and our hearts our broken.  We both broke down in the room and Mosse and Bagatell said they are going to do everything that they can.  But to hear that they are going to do everything that they can?  That is scary as fuck and I can't tell you, how scary it is to know what we are up against with this nasty beast, Neuroblastoma.!!!! But really WTF, is this really where we are in this life? Does our daughter really have cancer that is considered progressive? Why the fuck children get cancer is beyond me, but I tell you all, you will be hearing from us and  we will be spreading childhood cancer and neuroblastoma and how important.it is.

Doug and I have done our reading and we also trust CHOP's judgement and this is why we are there, because we trust them.  We felt that MIBG Therapy is what Emily should do! So, Emily will be admitted early Tuesday morning for MIBG Therapy. MIBG Therapy it is!  WTF, really!

The primary questions:
--Will Emily ever be NED? or can she be?
----Sure there is a possibility, but they don't know and at this point all they want to see is "Stable". In basic terms, the other trials are for a quality of life and to have the scans remain stable.
--Can Emily relapse?
--Are bony lesions such as in Emily's case hard to treat?
----Yes they are, they are the hardest to treat. 

What do we need from you?  Help spread the word about Emily.  Not only do we need your support, love, care and everything else more than ever, but so does Emily.  Emily doesn't know what is happening and honestly we feel that it is best that way.  She knows that she is being admitted next week.  But we also need your help spreading the word about Emily and neuroblastoma.  I can promise you that we will be making a difference in this world with this disease and other families going through this, Cancer Fucking sucks and families going through this needs all the support that they can get, no matter what the support is. Gift Cards for traveling will still be of major help with the transportation back and forth, and/or donations.

What is MIBG Therapy?
Here is a general description:
General Description of the Medication Being Used on the Study:
Metaiodobenzylguanidine (MIBG) is a substance that is taken up by neuroblastoma or pheochromocytoma tumor cells. MIBG is combined with radioactive iodine (131I) in the laboratory to form the radioactive compound 131I-MIBG. The 131I-MIBG compound delivers radiation specifically to the neuroblastoma cancer cells and causes them to die. 131I-MIBG is experimental, but has been used in more than 100 children in the United States by itself to treat relapsed neuroblastoma and metastatic pheochromocytoma. A recent study using increasing doses of 131I-MIBG in both children and adults with relapsed neuroblastoma or metastatic pheochromocytoma showed anti-cancer effects in some of these patients. The main side effect of this treatment was a decrease in the number of normal blood-forming cells (called stem cells) in the bone marrow, but a dose of 12 mCi/kg did not cause permanent damage to the bone marrow in a small number of patients.
There are certain tests or procedures that will need to be done to confirm that the subject is eligible for this therapy. These include lab work, physical exam, MIBG and or CT scan, an MRI, a bone scan, Bone marrow aspirate and biopsy, urine tests. Your doctor will determine which tests are required.
Before your child can begin treatment on this study, s/he will need to have an intravenous catheter (tube) placed in a vein. We can use an existing central venous catheter to administer the medicine.
Because your child's urine will be radioactive, a urinary catheter may be inserted through your child's urethra into the bladder to ensure drainage of the urine, which will be radioactive. The catheter will be removed 3-5 days following the treatment. General anesthesia or sedation is typically given for the procedure of inserting the catheter.
  1. Your child will be treated in a specially prepared room in the CHOP Pediatric Oncology Unit. Upon admission, the nursing staff will instruct you on the care you will give your child following the MIBG infusion. Because of the frequent exposure of the nursing staff to radiation and the high level of radiation surrounding your child during therapy, the nurses' contact will be limited to complex medical care, so that they are available for your child in the event of an emergency. Adult family members will be expected to be present at all times during the hospitalization to:
    • Assist with hygiene
    • Give oral medications
    • Offer and empty bedpans
    • Assist with meals
    • Change diapers (if used)
    • Change clothing and bed linens if soiled
    • Entertain or distract individuals who become upset or restless due to the isolation or procedures.
    • Record Dosimeter readings.
  2. Isolation: For 2-5 days your child will be placed in a single room with a bed surrounded by lead shielding to prevent exposure of visitors and hospital personnel to radioactivity. Family members may visit in the room, but must wear a radiation badge to measure exposure. A single family member can sleep in the room, but no one is allowed to go behind the shields or sleep in the bed with the child.
  3. Your child will receive fluids through the central venous catheter. The fluids will begin at least four hours before and continue at least 72 hours after the 131I-MIBG treatment begins.
  4. Your child will take a medicine by mouth, potassium iodide, to prevent thyroid damage from the radioactive iodine contained in the 131I-MIBG. This medication will be taken on the day of the treatment and will continue for a total of 6 weeks.
  5. The 131I-MIBG will be given through an intravenous catheter over 1.0 - 2-hours.
  6. During the administration of the drug, your child's blood pressure and heart rate will be checked frequently.
  7. Before and at regular intervals after treatment, your child will have routine blood tests to check his/her blood counts, hormone, liver and kidney functions. Blood will be checked at least weekly or more (if indicated) for approximately 6 weeks after the treatment. Approximately 1 teaspoon of blood will be drawn weekly for 6 weeks to perform the tests listed above.
  8. A MIBG scan will be performed to see where the drug is concentrating in the body following treatment. No injection of a radioactive marker will be required and this is usually done on the day for discharge. It is identical to the pretherapy MIBG scan except for not needing MIBG injection and it is usually shorter (15-30 minutes).
  9. Six to eight weeks after treatment, x-rays and other scans will be done to evaluate the response of the tumor to the treatment.
  10. If your child's tumor is responding or stable 6-7 weeks after each treatment, s/he may be eligible for a second and third course of treatment, as long as his/her white blood counts have fully recovered from the treatment, without requiring the use of stem cells. If another MIBG treatment is given, it will be at the same dose as the first treatment, unless it is thought to be necessary for safety reasons (based on toxicity information from the first infusion) to decrease the dose.
  11. If your child's blood counts decrease following the therapy, we will start Filgrastim (G-CSF). G-CSF is a medicine that helps increase the white blood cells. This is given by a subcutaneous (under the skin) injection (like an insulin shot) and needs to be taken daily. This medicine will start if the ANC (absolute neutrophil count, a measure of the infection fighting cells) goes below 750 and will continue until it rises above 5000. Your child may be given Neulasta every 14 days instead of GCSF. Neulasta works like GCSF to help increase the white blood counts but lasts longer in your child's body. Neulasta will be given if your child's physician feels it is the right medicine for your child.
Because of the toxicity, we will need to find a place for Brianna to stay and could be up to a week after, as well as Jessie because you don't want other children in contact with the radioactive.  Should probably be Brianna with my mom and Jessie will be with her dad. Everything that goes into the room will be thrown away, so whatever goes in the room, we must be ok with it going into the trash when she is done. A woman must not be pregnant or breastfeeding, which I am neither since I will be in the room.  Its a possibility that I may have to test for this for them. Because Doug and I will be wearing a meter, the hospital feels that we need to be close to the hospital, so they are going to see what they can do to get us a place to stay at the Ronald McDonald House, however the day that Emily is released from the hospital, we will not be allowed to stay at the hospital, so we are hopeful in finding a campground again that is close (like we had this time), so that we have a place to come back to if it is late. 

So, if you have stuck with my post this long, thank you!  Doug and I are devastated and our fears of what the days that are to come, we are scared.   It is important to understand that Doug and I are going to fight for Emily no matter what, and we will do whatever is necessary for her to win this whether she is stable or NED.  Our hope is NED, but if we have to settle for stable, than it is what it is. This disease fucking sucks and we will fight.  We will still be here in NJ to travel back to the hospital Thursday and Friday for some additional testing that is needed for MIBG Therapy, but we will do whatever we have to do.  Emily will be admitted early Tuesday and will hopefully be released on Friday of next week if the radioactive number is 7 or lower to be released. 

Right now we are asking for all of your love, thoughts and support for Emily and us as we endure this next part of our loves.  Our roadpath that was once edged out for us, is no longer what we know and we are living on a the edge of not really knowing what is happening from one minute to the next.  There is nothing that we know of what will happen after and all we can do is live day to day and and have to deal with what is happening day to day.  The treatment plan is no longer a plan like we had before, our treatment plan will be for Emily what works and what she can do.  THIS SUCKS.  Please send out your love, thoughts and support, we do need it.  We need the support right now.

THANK YOU again for bearing with me, and this long post.  This stuff is really hard to talk about with people, so it much easier to write about, so I hope all questions have been answered. 

Thank you for all the love, prayers and support being posted while in transit and the continuance of it.

Good night, remember to love your kids and hold them tight.

Tuesday, November 15, 2011

Another Long Day

Today I was able to meet the amazing guy who has given us a place for the camper to stay! It was great to put a face to person I talked to on the phone was great and I don't know if he knows how thankful we are!

Last night we also got to meet another NB family. They are staying at the Donald McDonald house so we were invited there last night! Karen and Hayley, it was great to meet you both and we enjoyed the conversation with another family (who is from va also) who understood what we were going through! Emily enjoyed herself and could be herself! We are sending lots of love to you guys!!

As for the scan, it went! I was so proud of Emily, I really was! We decided to try the MRI with no sedation but have the sedation team available and I would stay in the room with her! Don't know if you guys know much about an MRI but it is a big machine that is round and Emily goes in the middle of it on a table that she is buckled onto! The machine when it is started it knocks and then it makes really loud sounds! They said no binky and we had to put hospital clothes on! Her hat had sparkles in it so she also had to take that off also! We got into the room which is chained off and sealed shut and I sat Emily on the table! She shocked me and handed me her binky and hat, I was so proud of her! We had to use protection in our ears and we explained to Emily not to shake her head when we talked to her but to answer! I was so proud of her! She went in and they asked if she was ready and she said yes, the machine started knocking and then a loud noise which scared her so she jumped! But she was still! Tears started to fall from eyes bc I was so proud of her! She was going to do this! We got further into the scan and the loud noise changed and it was longer she did well the first time and then the next time, after about 6 minutes she started crying! They stopped the machine and pulled her out! She was crying for me! It broke my heart, she wanted to do this with nothing to put her to sleep and she just couldn't do it! I told her how so proud I was of her! So they brought her back to her room and started the sedation process! We have never used sedation before so it was new to us! At this point they took her back once she was asleep and we just waited an hour for her! When she was done we had to wait for her to wake on her own! It was about 515 pm when she woke and started pulling the oxygen off her, and the blood pressure cuff!

Now we wait! We wait until tomorrow to get the results and what happens from here and what Emily will need to do moving forward!

Send lots of love , thoughts and prayers her way this spot is nothing and we can move forward!

(picture of Emily before we went to hospital today when I met Mike from the campground! He recognized Emily from the website and came to talk to me!)

Monday, November 14, 2011

Quick Update

Emily did not have her MRI today, CHOP tried to get her in today for her scan and it just did not work out. So they have it scheduled tomorrow at 2 pm! Emily has to be there at 1230pm to prep for sedation and we won't get the results until Wednesday when we meet with Dr. Bagatell and Dr. Green! Please send lots of love, hope and thoughts that this spot that was seen is nothing!

Friday, November 11, 2011

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.

Wednesday, November 9, 2011

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

Monday, November 7, 2011

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!!!

Made It

Previously posted on Caringbridge

We have made it to the campground and have everything ready for tomorrow! We have to leave here by no later than 630 to make sure we are where we need to be!!

Please keep Emily in your thoughts, love and prayers!!

Good night

On The Way to Philly

Previously posted on Caringbridge!

We are on the way to Philly, well actually New Jersey! I have tried to update the past two nights but have fallen asleep each night while updating! Thursday night Doug and I were trying to be ahead of the game and email a few campgrounds in case the RMH did not have anything! We emailed 3 places and Friday morning while waiting for Emilys counts to come back, we received a call from a wonderful man by the name of Mike! Mike was calling from Yogi Bear campground to offer us a camp site at his campground for no charge! Amazing man, and we could not think him enough! He even is allowing us to leave the camper for a few days so that we don't have to bring it home and then bring it back for having to be there next week! Mike and the rest of you at the campground The Hubbel Family wants to thank you for taking that added stress and uncertainties off our back and we know we have a place to say! Emily is beyond excited because she loves Yogi and she loves the camper! Thank you guys again!

Now we just need to get to our destination, but we have hit some major traffic congestion! Thankfully Brianna is napping!! Poor thing, we had to take her on an unscheduled doctor visit last night to KidMed because it didn't seem like her ear was getting better and her poor butt was so red that she was screaming and crying! So, of course she has a double ear infection and yeast infection!! She had to get a shot Injection of antibiotics and tonight she will start on oral antibiotics and some bum stuff to help clear her up!

Tomorrow Emily will have her bone marrow aspirate done in the morning! And get her MIBG injection and CT prep and then scans Tuesday!! Dad and I are both a bit nervous and really hoping for clear scans! Ok so s bit nervous isn't the words that we really feel, but we will take it one day at a time and do what we need to do to move forward!

Dad and I had a few hours of Doug and Shannon time on Friday night! Thank you mom for coming over for a little bit so that Doug and I could be kidless! The few hours wasn't long enough, but it was definitely needed! We are looking forward to thanksgiving when dad and I will have some Doug and Shannon time as well! This just isn't normally something that do, but it is so needed!

I will try to keep you all updated as to how things are going! Oh thanks to all the moms who have reached out to me to let us know they are at CHOP and leaving their phone numbers and how to reach them! Thanks, means so much during a time like this and others reaching out to send their thoughts and love! We all stick together and I love that everyone does this! And I know everyone feels the same way we do FU Cancer!

Have a good night!! Hopefully we reach our destination soon, still looks like a few hours or so! Love to you all! Keep sending your love, thoughts and prayers for CLEAR SCANS!!

Thursday, November 3, 2011

Radiation is Done

I have found that writing these posts, get harder and harder.  I sit down to start to write, and my mind wanders and I go to my email and reply to emails, then come back, I go to facebook and read up on the many of the families that we follow, and then come back.  I do this with a lot of things, but I have found this to be moreso now than ever before.  So, I apologize if my posts ever go random, but its the mind of a cancer mommy and just random things come and go.

The weather has turned and it is cold outside. Our family in Massachussetts even has quite a bit of snow on the ground. Since the weather at night has been pretty cold, we have started using the pellet stove again, and every time Doug says pellets, I am always drawn back to the night when this all started and Emily was laying on the floor in the basement complaining her stomach hurt and we were trying to hurry and bring in a ton of pellets from outside off the trailer so that we could take her to the ER.  Why pellets remind me of this...they just do because that night is forever in mind.  Whats even harder to believe is that we are coming real close to a year of when Emily was diagnosed, 12/23.  

So, as of yesterday Radiation is done.  We are all HAPPY to be done with this part of treatment, because it was a lot on us with the constant back and forth, driving back and forth, and her having to be sedated everyday.  Sedated under the "white stuff" propofol for 12 days is a little much.  Many say this is the easiest part of treatment, and while in some aspects I can see why that is said, however on Doug and I it was still very hard. I think a lot of this had to do with Emily coming off of the propofol and the side effects this had on her.  She had the worse temper tantrums coming down off of this medication and was very moody.  

Emily is now done with the "consolidation" part of treatment and will be moving forward to the "Maintenance" part of treatment.  At this point the scanxiety is in high gear and what will come of the scans.  Since a complete workup has to be done before she can start the Maintenance part of treatment which is antibodies. We really want to hear that the Emily is Cancer Free, so please send out all your love, thoughts and prayers that she is clear.

We leave Sunday to head to Philly and right now it is up in the air of where we will stay.  The feeling of the unknown of where we will be staying is really hard, because the Ronald McDonald House can't guarantee anything until the day off.  You have to call them between 10AM and 12PM to see if they have anything available and if they don't have anything available, you can get a hotel, which in the Philly area are EXPENSIVE.  So, right now we are preparing that we will be taking the camper since, staying at a campground is much cheaper a night should the RMD now have anything available on Sunday and looking and calling campgrounds in the local area. We feel lost not knowing what we are doing and where we are staying.  

Monday and Tuesday are very busy days with appointments and scans, and after talking to Dr. Gowda yesterday he indicated that Emily's complete workup (meaning HMA &VMA, creatinine check for kidneys, hearing and ECHO) should also be done there at CHOP so that Emily will not be all over the place and she have a complete workup in one place. So, just waiting to hear from CHOP to see if those can be next week as well while we are there.  We also have a meeting with Dr. Bagatell to talk in depth about antibodies.  She sent me a 17 page document that talks about side effects, and says that she would like for us to write down all the questions that we have so that we can talk about them during that meeting.  She said this meeting will be a long meeting to talk about how antibodies will work and what to expect and what Emily will be getting. So, it is going to be a busy time while we are there.

At this point that is about all I have as far as an update.  Radiation is done and we are very happy with that.  Emily does have clinic on Friday to make sure that she is set with traveling such a far distance on Sunday, but that is where we are. Oh and something Doug and I are looking forward to, we are going to have some Doug and Shannon time together alone, we haven't had this in a very long time, very long time and we are honestly looking forward to this!

Hug your babies and give them lots of love.