Week 2 Post MIBG Therapy of Round 2

Emily opening her package from Sue with a Justin Bieber Notebook! 

Two weeks have passed since Round 2 of MIBG Therapy.  We have 3 weeks left before we head back to Philly and see how this Therapy did for Emily. And yes, I am counting down, counting down because of the fear of what it will bring or that we learn.  Last time we had 6 weeks, but this time they scheduled her re-evaluation scans at 5 weeks. 

As you recall Emily had her stem cells given back to her last Monday, which this leaves her with 3 bags of stem cells left, Thursday she had clinic and needed both platelets and red blood because they were both low.  Her ANC and WBC dropped again, so still being very careful of her not getting sick.  Doug was sick for a few days, so he actually slept on the couch not to get Emily sick. However since being home from Philly this time, Emily just hasn't been herself.  She seems very tired often so much easier, she isn't eating much (where we have started the periactin again since she isn't eating much and her weight is down), and honestly just not herself.  Some days she has been very quiet, not saying much but been very whiney and she has had a few days where she has been saying her stomach hurts (which has gone away after giving her some zofran). Monday, Jan 30th will mark 7 days from when she received her stem cells back, so we should start to see them working within 10 to 14 days.

The past 2 weeks since we have been home have been really hard. Hard because we have a lot of questions, so we have been asking a lot of questions to our onc here at VCU, reading a lot anything and everything, and hearing a lot of children passing and honestly we are scared.  Scared about all of this and what it all means. Last night Doug couldn't sleep, and he was up all night reading and reading, he couldn't stop. He is again reading tonight while I am updating.

Thursday we did speak with Dr. Sholler from Michigan via phone conference, she is one amazing women and knows her stuff. Dr. Sholler told us yes we have some options, but only if Emily's platelets are at 50 or above, meaning they have to recover.  If they are not, we won't have any options anywhere, so we are very hopeful that we start to see her platelets recovering soon..  She says since Emily has never had a bone marrow issue, then her platelets and hemoglobin should recover on their own.  However, when we go back to Philly on the 20th, Emily will have her bone marrow checked again, since her last one was in November. Dr. Sholler has told us what she has available right now, but before we get too ahead of ourselves, she wants to see Emily's scans, so we will send those out to her over-nighted tomorrow.  We may be taking a trip to talk with her, but we will wait to see what comes out of her looking at Emily's scans. We are trying to stay ahead of the game and just know what we have available.  

Overall, we are all home together and enjoying our time together. However this time home compared to the last time, it so much different because our minds are not where they were before.  Right now we are just trying to keep our head above water.  Its scary, we are seeing CANCER everywhere out in the community, what is coming to this world.  We really need some awareness for Childhood Cancer and the awareness.of Neuroblastoma. To keep this post from going array, I will leave it here...but make sure you hug and kiss your kids and tell them how much you love them.

Update on somethings going on right now...

--Love For Emily Fundraiser, continued until Feb 24th. Check out www.emilyhubbel.com to learn about Emily. Click this link to help out if you wish/can.

--will have more information for some fundraisers that are being worked out right now.

--We are working a project ourselves going on right now...we are collecting (not expired) coupons for items such as; shampoo, conditioner, chapstick, deodorant (men and women), toilet paper, tissue, hand sanitizer, razors, shaving cream (men and women), womens needs and many other things.  Since we don't have the money either, but we really want to be able to give back and pay it forward, so we are using these coupons to work out the deals at several different stores to get these items for free to make bags for newly diagnosed families at the Children's Hospital of Richmond.  My sister in law, Tricia, is getting some Team Emily bags made and once we have enough to make at least 30 bags, I will be teaming up with Connor's Hero's who makes bags with different items in them for families as well. If you are interested in helping out with this cause, you can send your stuff to PO Box 5383, Midlothian, VA 23112.  

Reality Stinks

The past few days and honestly the past week have been extremely hard on Doug and I with what the reality of what we are dealing with right now! Hard to think of anything else other than this!! The reality of death being thrown in our faces means we know what we are dealing with. What has been said and what has happened over the past 13 months have been a lot to deal with, but the meeting with Dr Mosse has been the hardest! Dr Mosse is very upfront and honest and tells you like it is, we like that but it sucks all at the same time. We also know that Dr Mosse is one of the best doctors when it comes to NB and we believe she knows what she is saying when it comes to this and what we are dealing with. One of the biggest things that shocked us the most is Dr Mosse seemed completely shocked that Emily is not in any pain. For this we are happy she is not, we are honestly very thankful! Our heart hurts, and I can tell you I never really knew what that meant to have your heart hurt until this. The tears sting and burn as they fall down my face and the stress is the highest it has ever been. ( stress is awfully brutal to your body )!! Reality stinks that Emily's sisters have no idea what is happening here and the biggest reality is Emily has no idea either and just does what we tell her to do.

I wanted to update and explain to you all, the reality does stink, it not only stinks, but it really sucks. We honestly thought we were gong to come home and have a huge NED ( no evidence of disease ) party to say "take that cancer" and "fuck you cancer", but we are not. We are coming home with heavy hurts, fear, anxiety and everything else. I can promise you that we won't go down without a fight! I also want you all to know we have a lot of hope and will NEGU ( never ever give up)!! All of your prayers, love and support being sent our way means so much to us so please don't stop because we need it now more than we ever have! But we need you to support our decisions and not leave anything negative about what we decide to do. Doug has already started doing his research with reading, reading and reading! We already have the scans and scan reports that Emily has done here at CHOP completed and given to us, so we are ready to send them off to Sloan, Sholler and St Jude! I have been contacting a few people who know the ins and outs of NB and have been given a lot of information that we can use to read up on and then start figuring out where to go with what we have. Doug takes what information i have been provided and reads up on each of them. What I ask of all you, please don't leave messages that you are not happy with the choices that we are making or that we shouldnt do what we are doing and do something else! I want all of you to know that Doug and I carefully think out each trial, each treatment, and each step and even hospital that Emily does and we try to think of all the questions to ask to make sure that we are doing what is best for our daughter! She is the priority here and whatever we have to do, we will. We love Emily more than anything and without her here with us.... Well it would fucking be devastating to say the least. What we have positive on our side is that Emilys disease is not progressing at this point and her n mycn is non amplified which means it is not aggressive ( not spreading rapidly at this point ) and currently not in her bone marrow ( however we do know that she could have dormant cells in her bone marrow and that NB tends to hide and comes out when it wants and when it comes out it can go fast )! What we also know is that the pathology that we received at the beginning of diagnosis of n mync non amplified and favorable histology ( means she should respond to treatment) means nothing, it really just a help to know what to expect at the start of this for the doctors, and we are not all textbook here. We know this because Emily is not responding to chemo, radiation and MIBG IV radiation and like I said before could become aggressive without warning. Emily stopped responding to chemo after round 2 where the spot on her knee went away and the tumor in her abdomen was getting smaller, but after round 2 we have seen no change!

Now that Emily is completing her round 2 of MIBG therapy and then 10 days later she will have her stem cells given back to her we know that we can't do any other trials or treatment right now for 6 weeks. The stem cells will be given back to her at our home hospital and will require an overnight stay to do them. We are advised it should take about 10-14 days to see them start working. Once we use a bag, this will leave us with 3 bags of stem cells left. Her scans have already been scheduled for the week of either february 20th or the next week, and during that time we will have her broviac line removed and place a port and also have her bone marrow checked ( I sometimes wish they did a 4 point bone marrow check like Sloan) Our first night inpatient this time, Dr Mattei came by to say hello and ask how we are doing, he is the doctor who removed Emilys tumor completely back in May, we love him. So we want him to do her broviac removal and port placement. Depending on what is happening at that time with her disease re-evaluation and her counts ( platelets especially ) we will really be able to make a decision of what to do and where we should go!! If round 1 has kept her disease "stable" which is the continued hope or better for round 2! And we still have hope that round 2 could do better than round 1, it's just the wait that sucks even moreso at this point. We don't want to wait, fear sits, anxiety is the highest it has ever been, but the love we have for our daughter is the strongest. We are scared, more than we have ever been before. Scared of what tomorrow, the next day, and the next 6 weeks bring. Scared of platelets not recovering because that means that our treatment for Emily is narrowing.

Once we are home, which should be Monday sometime, we are back to clinic twice a week! We have an organization who is starting meals for us, thank you Fairy Godmother Project because this will help so much. We may even have the 4th and 5th opinions with other hospitals while we are in the waiting zone of 6 weeks with the others we have previously talked about. We are being proactive, and still trying to stay one step ahead of the hell we are dealing with. I know some others have asked what they can help us with, here are some things ( http://mirandareneeharrison.webs.com/neversaynever ) , but honestly sometimes just knowing what to ask for help with you have no idea. Our biggest help to us is just the love and support. And I know we posted in our previous post of things that can help us as well.

Thank you again for all of the emails, Facebook messages, text messages and comments you all have left. I am sorry if I have not responded but know I thank you so much and we appreciate each of them. Since all of this I have not been much of a phone talker and prefer to write it out in someway, shape or form.

Know that when we are physically ready, we want to give back to our community, our supporters, our local area and fight for more cures for childhood cancer, specifically neuroblastoma. "pay it forward" is what we want to do.

Please continue to send love, support and thoughts our way! Make sure you hug and love your kids with all your heart. Give them a hug and tell them each how much you love them!

Reality

We arrived in New Jersey on Sunday, to stay at Timberlane Campground. Thank you to the campground so much for your kindness and generousity and offering a discount for us while we stay with you for Emily's treatment. It means so much to us and our sincerest thanks to you! This week while here in Philly/New Jersey we have really tried to keep ourselves busy and not think about the obvious of why we were here, scans to see if the MIBG Therapy was affective. Emily finally got to meet her friend, Sue, who drove 6 hours to see us and stayed in the clinic with us and went to the MIBG injection and lunch. Emily didn't require a blood transfusion or platelets on Monday, they actually appeared to look as if they were going up, so we were excited to get these results. Sue is such a kind, amazing woman...she is beyond amazing for many families and she deserves this for us to say Thank you and we love you. A family that we met the last time we were here, The Rinaldi's, invited us for dinner on Tuesday night. Tuesday Emily had her MIBG scan and this was perfect to keep our minds from the obvious and just enjoy the company of other adults and the kids to play with their kids. We thank you Rinaldi's for inviting us and having us over for the night. I think we ate till we were full and just enjoyed the company.


Today was result day, the day of facing reality. We were meeting with Dr. Mosse to go over the results of the scans that Emily had previously. It appears that we are no longer dealing with Dr. Bagatell and we are with Mosse, which either way is fine being that she is very well known in the neuroblastoma world. Well the news was not what we had hoped for, we had both tried to walk in there feeling very positive, but it wasn't positive. Emily's disease is considered stable, which in terms is a good thing, because it means no progression. However, there is no regression. Emily went through 6 rounds of chemo, 2 extremely high doses of stem cell transplant, 12 days of radiation, and 1 MIBG Therapy and there has been no change, No change, NO CHANGE. The spot on her skull that we had been previously told we can lay this one to bed because it is not MIBG avid, Dr. Mosse says it is and it is there and the MIBG picked it up. While this completely bothered me, it doesn't change where we are today. It doesn't change what we are doing or the reality of where we are. The spots on both of her femurs and both iliacs are still there, completely unchanged. The spot on her spine (l4) is still there, again no change. The spots that were seen on the "super scan" don't show on this scan, but they don't compare those and didn't expect to see them. But she explained they were seen in the left tibia and what appeared to be in her upper abdomen, but it wasn't know exact where it was.

The talk we had with Dr. Mosse was a serious talk today, one of which I never thought we would have. (F U Cancer) I still remember when Emily was first diagnosed and the day after the surgery the doctor, Dr. Goddair, that walked in and said you know she is not going to make it. I was pissed and said Thank you and she knew it was my cue to get the hell out of our room. The talk we had today, was not what Doug and expected and all I was reminded of is what Dr. Goddair said. So, what does this mean? Emily is not progressing or regressing, it is great that she is not progressing, but Dr Marris feels that the previous MIBG Therapy put a stop to anything progressing. Their recommendation was to go through with Round 2 of MIBG therapy and then 10 days later Emily receive a bag of her stems cell at our home hospital to keep things at bay...what is the goal we asked? She said the goal is to give Emily a "good quality of life" (we heard this a lot) and to not have her progress in the mean time. Is there anything else that we can do instead of going into Round 2 of Therapy? Not at this time Emily is not eligible because her platelets because they at least need to be at 50 to be eligible for any other trial and they are currently at 15 fighting to come back. So we worry if getting Round 2, what happens if her platelets don't recover? She said most children's platelets recover after receiving stem cells, unless there our other situations. So, we really have no where to go. We felt lost and the reality of two parents trying to make the best decision for our daughter while breaking down and also trying to remain composure for the kids, was a task that was much harder than I ever thought we would have to do. We both emphasized that we don't want to be put in a situation that after Round 2, and stem cells given back, and platelets still don't recover and we find ourselves with no other place to go. We don't want to be there. She didn't feel time was of an essence and that Emily needs to do MIBG now, but at the same time she didn't want to wait any longer than a week to start Round 2.

Questions that were asked, what does this mean to us? Does this mean that Emily will never be NED? Dr. Mosse says that with induction period of 6 rounds of chemo, 2 extremely high doses of stem cell transplants, 12 days of radiation and then 1 MIBG Therapy and there hasn't been any change, she doesn't feel that she will ever be NED and that we will be dealing with this for...well as long is Emily is alive. Doug said, "I need to know the answer to this question and there is no other way but to just ask it, will Emily die of NB?" Dr Mosse said, "Yes, but there is no way to say if it will be tomorrow, 6 weeks from now, 6 months or a year. So we need to give her a good quality of life and keep things stable." What the fuck? The pathology we received at the beginning we kept being told was good and that we will have our daughter for a long time and now it is "children with more than 3 spots when diagnosed do poorly and dont normally make it." Was this real, where we really sitting here in Philly and hearing Dr. Mosse say these words. They were real because I was wiping tears from my face, and those tears hurt, they really hurt. Who thought this is where the hell we would be, who thought that we would be dealing with neuroblastoma and trying to make sure that we make the right decision for our daughter. Who would have thought.

The struggle was then should we move foward with MIBG Therapy in hopes that we can get her platelets back up and then move forward with another therapy. Today's platelets dropped AGAIN, and she needed both platelets and blood today and this told us we have no other options right now anywhere, move forward with MIBG Therrapy. There is still this struggle in my head, is this the right thing, are we doing the right thing. We just have to totally believe with all the information that was laid out in front of us today, that we are making the right decision.

You look at Emily and she looks amazing, she is happy and just looks so healthy. You would never know that underneath she has cancer, cancer in a 4 year old. Cancer that isn't fair that our daughter has and that it will take her life. Neither of us are at a comfort level to just stop and think this is it for us. We won't stop, MIBG Therapy is where we are tonight. Round 2 admission. Then stem cells 10 days later and then other opinions with Sloan -- Kushner, Giselle Sholler in Michigan, and then St. Judes. We won't stop, and we can't stop, Emily is happy and just a joy to be around and in no pain. We can't accept the fact that it is said yes she will die, because we won't give up. So, Neuroblastoma, you can take that, and find somewhere else to go. We must find a cure for Neuroblastoma, children should never have to deal with this and parents, like ourselves, should never be in this situation wondering if we are doing the right thing treatment path and did we ask all the questions that we should have asked to do the right thing. Are we going to be playing the "Would of, should of, could of" game? The regrets and the I wishes. This is not fair and these are words I don't like my kids to say, but you know what this isn't fair.

But sad reality is, we are scared. We are scared beyond our minds. Scared to lose our daughter, scared because of all the "what ifs"! Its scary, because the reality is the word "death" was thrown at us today. I couldn't catch it, because it was thrown and smacked me in the face and nothing I could do to stop the tears, because they came. Scared because I again watched my husband, who doesn't cry about much, break down again today. Why does this happen and why did it happen here, because this should not have happen!!!!

We've asked if Emily could get a port placed so that she can enjoy life and not be limited to things (no pool, no good ol soaking baths and no dressing changes unless she is accessed). Dr. Mosse said that is something else to give Emily a "good quality of life" and we could plan to do that when we get her 6 weeks scans and bone marrow biopsy.

Please send us lots of love, support and thoughts that we are doing the right thing and going in the right direction and that we continue to make the right decision so that happy lives a long happy life with us. I know that neither Doug or I can handle life without her!

I did receive an email from an 8News reporter who wanted to meet with Emily and I tomorrow (Thursday) and do an interview to try and push about the Mattel Cancer Barbie doll. I sent her an email back and thanked her and said I would love to do this because I not only want to get more attention on childhood cancer, but we want more people to know about our amazing Emily and of course put about this Barbie, but that we are not home. Could she please wait until next week and we would be happy to do this and do a video inpatient here at CHOP. I haven't heard back from her, but I really hope to get to do this. While I know I would be really nervous about being front of a camera in front of people, my thoughts about childhood cancer, my daughter are strong and I feel it would be important. So I am hoping to hear back that it can be placed on hold until next week.

Its 3AM and OR will be here early in the morning to place the foley, I have been told they could possibly be here at 6am. So it will be a long day with no sleep if I don't get a few hours of shut eye. So I should get some sleep. I have been receiving quite a bit of emails the past few days of people asking what do we need, what can they help with? Thank you all so much for all of your kindness, thoughful messages, emails and words, they all mean so much. But really honestly we need lots of love, support and thoughts. Gift Cards for traveling since we are looking into options still and if we can get her treatment somewhere else, we will go there, donations are certainly very helpful right now. Gift cards can be sent to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

Or donations can be sent to: 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. or you can use the Donate button on Emilyhubbel.com. Again I just am posting this because so many have been sending emails and asking. So I want to say thank you again!

And like I said really just your love, thoughts and support mean so much. I am sorry if you have emailed and I haven't responded, I am sorry if you have left messages on facebook and I haven't responded, but honestly the past few days have been very overwhelming. I do apologize. Thank you again for your support, it means much more than you will ever know.

Make sure you hug and kiss your kids and love them with all you have. Good Night. Please hope that this MIBG Therapy will go smoothly and Emily handles this round much better than she did last time.