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.
- 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.
- 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.
- 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.
- 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.
- The 131I-MIBG will be given through an intravenous catheter over 1.0 - 2-hours.
- During the administration of the drug, your child's blood pressure and heart rate will be checked frequently.
- 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.
- 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).
- Six to eight weeks after treatment, x-rays and other scans will be done to evaluate the response of the tumor to the treatment.
- 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.
- 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.