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Wednesday, October 5, 2011

MIBG Results

First, I must say I am sorry if we have been unresponsive, by not responding to emails or text messages, however the past few weeks Doug and I have been through a lot emotionally, physically exhausted.  As parents with a daughter who has the big "C" word, our life has been turned upside down.  I remember in the beginning someone told us it would get easier, and honestly Doug and I have not found it to get easier, we have found it to get harder.  Its not easy, and it surely isn't easy hearing about how many kids that are not making it from this horrible big "C". Its devastating, it really is.     
So previously I left off where we were waiting to hear from Mass General and MD Anderson...I must thank all of the amazing people who have thought of us during this time and sent us gift cards to help with traveling! 

Getting an MIBG or just scans in general is scary, very nerve-racking to say the least and while waiting for that phone call or meeting to hear the results is as much as worry some as everything else!  I'm always afraid that I will miss that phone call and then just when you think ok so we are not going to hear on this not, the phone rings. While it was not time for Emily to really have a scan due to the actual study that Emily is on, the doctor wanted to get another MIBG just to see if Emily’s lesions , the 2 iliac wings and femurs that she had, had made any change.  

As you know Friday afternoon Emily had that MIBG.  The results were not what we expected and hoped for. At 6pm, we received a call from Dr. Gowda letting us know that the 4 spots in question, were still positive and the iliac and the femur on one side was much brighter than they were on the last scan back in June.  June’s scan showed one side to be brighter than the previous scan and within this scan, there was no change from June.  The results for us were actually very upsetting and turned our worlds upside down.  Doug and I felt that having Emily undergo 2 stem cell transplants (tandem) that this would clear up these spots and we would move on with no problems and she would be NED (No evidence of Disease).  However this is not the case, the case is she is showing more uptake.

I told the Dr. please prepare 3 sets of scans and paperwork for us to pick up Monday! Immediately Doug and I started to worry and worry about Emily’s total well being with much of the constant back and forth from Emily’s doctor and what they believe and what they don’t believe of her spots.  From the beginning it was of concern that maybe it wasn’t neuroblastoma because the spots was symmetric on both legs in the same spots and tried several other varieties of scans to see if they could figure this one out, and everything they did didn’t turn out with the answer they were looking for.  For us, it was an immediate second opinion back in early January and VCU Medical Center waited to hear what Sloan Kettering had to say and how they would stage it.   VCU Medical Center staged Emily Stage IV based off of Sloan, because once Sloan looked at it there was no question to them that these spots in her iliac wings and femurs were metastatic disease, so VCU Medical Center followed what Sloan went with.  Each scans that have come up, the spots continue to show positive in her iliac wings and femurs. After Round 2 of chemo, again we had scans and all the sudden the doctor indicated the spot on Emily's knee was gone and the spot on the back of her skull was still showing.  Both Doug and I were shocked, because we didn't know about those spots and immediately went for a 3rd opinion in March at CHOP - Childrens Hospital of Philadelphia. The MIBG done in June showed the left side to have some uptake and be a little bit brighter, but they felt it was just the way that Emily was laying and it was of no concern.  However come time to when Doug spoke to the doctor on Friday before the actual scan, he concluded that there was uptake on the last scan and we will see how things are after this scan.  

Once we heard Friday's results, the worry started, the fear came on, and anxiety was more than we could handle. We started looking at other trials and immediately was getting ourselves together for what we had to do to overcome this.   Friday evening our emotions were all over the place, tears, and just what the hell do we need to do to get rid of these persistent spots??? Saturday morning we received an email from Emily’s doctor that he wanted us to come in Monday afternoon and he would have the paperwork and discs ready and to check on Emily’s counts, which we also knew he would go over the scans.   So, yes when I wrote the post on Sunday, we knew some of what was going on, but we didn’t have anything as a final conclusion. As well as we were just not ready to talk about it. The fear of progression is just too much to handle!!

Monday afternoon, we met with Emily’s doctor and he concluded that he met with the radiation oncologist and that yes there was some uptake on one side that was worse than the previous scan, however he couldn't say how much uptake and the doctor said the radiation oncologist concluded that while it was brighter he couldn’t say if it was from the clothes she was wearing or from the iodine itself.  Of course this brought on even more anxiety, because it was again conflicting stories and then the thought of really her clothes? WOW really, and actually the radiology oncologist wrote up an Addendum and added this to the actually final results of the MIBG scan.  We asked her doctor several questions, but he knew where we were going with this.  He knew our minds were ready to move on, get someone who could help Emily.  He wrote a letter that indicated “To Whom It May Concern” and then wrote about Emily’s journey at VCU Medical Center and indicated if you have any questions to please contact him.


The results were beyond devastating to us both. 8 rounds of chemo (meaning 6 rounds of chemo and 2 stem cell transplants involving extremely high doses of chemo) and it appears that the disease in her iliac wings and femurs are very persistent and appears that she is not responding to the chemo. What makes this road even scarier is that we know if she has a relapse or progressive disease, there is no cure and we are not ready for that road.  When we hear that she has more uptake in the spots, that to us is progressive and we understand that you have to have a certain percentage for it to be considered that, but WHAT ELSE DO WE NEED TO DO that we are not already doing for her. If we have to travel that road for relapse/progressive disease, we will do whatever we have to do, but we are just not ready.  Our hearts our broken, our minds and physical well being is totally exhausted, and our minds are running a mile a minute and we can't keep up with our thoughts.  We are terrified, this disease is a nasty, horrible beast and all we want is for this to be gone and that we can say No Evidence of Disease and have a NED Party!  This road is very hard, we have no one to talk to about this and from anyone to get suggestions on what we would do.  Sure, I can text message some of my other NB mom’s and get what they would do, but it’s nothing like having a close person that you can call and say hey help me.  We are her parents and as her parents we have to make the right rational decision.  Doug and I have talked and talked about what is the best decision and where should we go from here.  What do we need to do?  But the anxiety that we are feeling is overwhelming.

Dr. Gowda says he just wants to move on to radiation, because it is the next part of her treatment and after radiation do her complete scan workup and see where she is then. And while that might be the right thing to do, we just don’t have 100% trust in Dr. Gowda nor the doctors at VCU Medical Center. Is there something else that we need to do for Emily prior to radiation or do we just move forward with radiation? What if they are missing something that we don’t know about, what if radiation is done and it doesn’t clear it up? What if? What if? VCU Medical Center only treats 3-5 patients a year with neuroblastoma. Last year Emily was the 3rd case and this year so far they have not had any new NB patients.  So within the last 10 years they may have treated about 30 NB patients and that is really boosting their numbers dramatically! We also learned that Emily would be the 5th patient at VCU Medical Center undergoing the CH 14.18 and IL.2 Antibodies at VCU Medical Center.  That scared us more than you can ever imagine because as a parent knowing that antibodies is very painful, causes high temps, blood pressures and other things, if the doctors and nurses don’t know how to handle a new hurdle, we could be endangering Emily's life.   Please know that we are not putting down their work, but there are a lot of things that we are not happy with and that could be done better.  Are there other hospitals out there whom have more NB kids that they treat a year and know how to treat them?

At first we thought we will send all of her scans and paperwork over to both CHOP and Sloan Kettering and see what both hospitals say we should do.  We started doing a lot of research and seeing that CHOP follows COG within all of their protocols, we would know that they are national protocols.  While Sloan is an amazing hospital, and if we had to use them, we would, but only for last resort purposes.

Doug and I have opted for a new road for Emily as long as CHOP agrees!   We sent an email to CHOP (DR Bagatell and Dr Mosse to see what our next steps would be and where to go from here. Being that Emily was scheduled for a simulation for radiation (please see update about radiation below) this morning and what steps we should take.  CHOP recommended that we move forward with the simulation.

After speaking to CHOP, the MIBG scan that was done after stem cell transplants is not part of the protocol and VCU just did this scan to see where Emily stands, so either way CHOP would be moving on to radiation without having seen the scans.  Dr. Bagatell feels at this time, go ahead and do the radiation and after they receive the package and they look at it, they can then make a sound decision should there be anything different than that.  If the radiation oncologist reviews the scans and feels that radiation needs to be done at CHOP, we will go there. If they feel we should just move forward with radiation here at home hospital we will do that. 
Now that we speak of Proton Radiation, it was denied by Mass General and MD Anderson, both hospitals felt that proton radiation would not be beneficial for Emily anymore than photon.  This caused a lot of distress on both Doug and I because there was a lot of information being withheld from us from our own doctors and then the other doctors in the clinic releasing information that we were advised was not true.   Our doctor recommended Proton for Emily, Hampton University thought it would have been good, however two of the top hospitals MD Anderson and Mass General felt it would not be beneficial.  We also spoke on the phone to CHOP during this and they also felt it would not be beneficial.  It’s one of those things that even as we are moving into radiation, we are stressed at knowing the parts of the body that the conventional radiation will hit and what kind of problems that she can have in the future.
Currently right now we will not be traveling for radiation unless after CHOP looks at the scans, they feel something differently, we will go from that.

Our path is still heading for a new road…traveling will be in our future!  CHOP does feel it would be beneficial that Emily have her scans and do antibodies at Philadelphia, just because of the inexperience at VCU and to see where she stands with her scans. So again as of currently today Emily will do radiation at her home hospital, but after radiation, we will be heading to CHOP for scans  to see what radiation has done for her.  While our hearts still wishes that we could do Proton for Emily, we have to move forward and do what is right for her, we can't hold off and have that fear that this will grow more.  If radiation is supposed to help rid those persistent spots, then radiation it is.  So again thank you for the gift cards that you sent, and the heart felt love and care sent our way. These cards will still come in handy for us to head to Philadelphia during the 6 months of Antibodies at CHOP.  Thank you, thank you!
I can tell you all that Doug and I are both terrified of all the What ifs? All the worries… and just in general Emily’s well being.

SIMULATION for Radiation

Today Emily had her sim for radiation.  This is where she would run through the CT scan and they would mark her body with these tattoos. The tattoos are small x's on her body that they use a needle to place it there, and she will have these tiny x's for the rest of her life. As I held Emily and they gave her the horrid propofol that puts her to sleep faster than you could ever imagine, her head falls over on my shoulder and she goes limp and the binky falls out. Doug and I hate the propofol and to have to put our daughter to sleep.  Its scary because of all the major side effects, with one of them being death.  While we have had to use this too many times to count and each day of radiation she will have to use it, you listen to her heartbeat on the machine and watch her vital signs.  Sitting outside while waiting for the doctors to complete the sim, all I could think about it, is I'm scared, Doug is scared. Will this work? When she was just about done, the resident came out and said Emily was marked with 8 "x's" on her body of where they will radiate.  I felt my face get red and the fear once again took over and the anxiety went into full bloom.  Doug asked lots of questions and Emily was crying, "I want to go home, I want to go home" so I had to walk away.  As of right now, radiation is scheduled to start October 17th.  I can't tell you how nervous we are about the spots the radiation will hit and what side effects she will have now and later. 

I also can't tell you all how nervous we are...wanting to know if radiation will clear our daughter of cancer? We don't want to hear those words again that your daughter has more uptake in her iliac wings and femurs, we want to hear the words, your daughter is in remission.
Now that September has come to a close and Childhood Cancer Awareness is no longer a big deal, and it is now on to Breast Cancer Awareness Month and pink everywhere.  I ask you not to forget about Childhood Cancer, our Emily, and all the other children out there just fighting for their lives and trying to live day to day. I ask you not to forget about gold and know that Childhood Cancer is important to share.  No parents wants their worst nightmare to become part of their daily life, we can attest to that. Its scary, we worry, the fear, the tears and all the what ifs.  We don't just worry about Emily, but we worry about Jessie and Brianna and think twice when they say this hurts and our minds run to the Big "C". 

If you are still with me, I thank you for still reading.  This was a long post, but it was much needed.  Its hard to share this over and over again verballyand instead of doing so, Doug and I have been rather quiet and keeping to ourselves.  So, this post is much needed so you all know where we are.  We are scared, scared!!  We are terrified. 
Remember to love and hug your children, kiss them goodnight.


  1. You live so close to Vanderbilt Children's Hospital in Nashville, Tennessee. I live about a half hour from there if you needed some place to stay. I could even help watch your girls, as I am a stay at home mom. I would try calling them and seeing what they could do and if you could have someone there look over Emily's scans, etc. Is there any way to do this? I am just wondering. But Vanderbilt children's hospital is one of the best in the United States for children with Cancer and other issues. Just an FYI.

  2. This disease is such a roller coaster. I just wish I could give you a hug. Praying and praying that radiation will clear up those spots.

    Sam just finished up the ch14.18 antibody therapy. He was actually only the second kid to have it at our hospital. We got opinions from Cincinnati Children's and MSKCC and with their help made the decision to stay home for it. If you want to talk about it feel free to email (cassiesartin@gmail.com) or facebook me.

  3. I'm praying for Emily. For discernment for you and wisdom and knowledge for the drs.


  5. Thinking of you and so sorry to hear that things did not show what you hoped. Sending you lots of love and hugs!

  6. I'm so sorry you have to ride this roller coaster at all. Add to that the extra ups and downs of dealing with doctors that don't see many nb cases and it turns into such a nightmare. I'm glad in any case that you've got the ball rolling to finish up at CHOP.
    Everything I've read indicates that nb is extremely sensitive to radiation. Also, my son's tumor continued to shrink for weeks after chemo (following round 5 in the weeks before surgery). Perhaps this is why COG protocol waits until after radiation to restage? Maybe the combination of high dose chemo followed fairly quickly by radiation is more than those nb cells can handle? Perhaps it is because there are usually some "hot spots" left after transplant that they follow with radiation? I know my musings will not take away that sinking feeling in your gut. I just hope that there is a reason why the protocol waits until after radiation to do scans again.
    One last thing - I was probably one of the parents that said "things will get easier". I realize now that was not entirely true. It is true in the sense that constant trips back and forth to outpatient clinic and inpatient stays will become routine and somewhat predictable. You're absolutely right that the emotional burden does not get lighter. I cry buckets of tears every time I hear about another kid that loses their battle, just as if they were my own. Probably because I know better than most that it could very easily have been my kid. I'm sorry I'm rambling a bit. I just want you to know you're not alone in the worry and anxiety and pain.
    Please don't give up hope yet.
    Kristal Melland

  7. Thank you for sharing again Shannon. I live very close to Boston Ma, and have known a few children that were treated at Tufts, and Children's Hospital Boston, some with wonderful outcomes, and some with not so great outcomes and I believe it's always important to get another opinion if able. I continue to pray for Emily daily, and will continue to do so. <3

  8. I am just at a loss for words. I can't even begin to imagine having to live what your family is living. Praying and keeping you in our thoughts always.

  9. I'm so sorry to hear that the results did not cone back how you wanted and that the spot are being so stubborn. This is a rough road and I just wanted you guys to know that we are praying for you and especially Emily!

  10. Have you looked into St. Judes? I am praying for your family every day. Emily is always on my mind. I pray that the radiation clears everything up and that you'll be having that NED party very soon.

  11. My heart goes out to you. I almost feel guilty with Brandon's diagnosis of NED. I wish I could help somehow.
    I know you struggle with the choices as a parent you must make. It is so hard. Just keep praying and I will continue too.
    Give Emily a kiss from the Link house.
    If you really don't feel confident with your doctors look into ST JUDE in Tennessee. They are world renowned in childhood cancers. I almost traveled there with Brandon. You can never have too many opinions :)

  12. Oh Shannon, I am so, so, sorry! I just want this cancer to be gone forever. I wish there was something I could do for your family and Emily. I am just heartbroken for you. No one should ever have to go through this.

  13. Friend of Lynn Whittaker .. KathyOctober 06, 2011 10:11 PM

    Emily's mom, there was one comment that someone wrote and , and it was the word HOPE . I know you must feel hopeless right about now . I can only imagine what you and your husband are going through . I've cryed and prayed . You had asked " what else can we do ? What are we missing?" the one thing I haven't through all of this in your writings forgive if I've missed it ... Is GOD..... You need Him on this and through this ordeal. He wants you to come to Him . The one who gave you your daughter.
    And lean on Him for this burden is not meant yFor you to carry . Find out who this Jesus is. And what is does . Someone else wrote they praying for you and Doug to have wisdom and discernment well I pray you as k God to confirm things for you. And also wisdom for the doctors. Let God give you rest . And peace. For your minds and your souls to make good dicisions . In the midsts of turmoil. Pray withyour husband out loud for your daughter!!! Together. Satan wants to destroy your family don't let him!!!
    Get right with god and get a talkin relationship with Hm. And Doug too. What could it hurt?! Nothing .
    You need Him and so does Emily . I pray without
    ceasing like it says in Gods word the Bible . Get a
    easy reading bible and start reading the miracles
    Jesus did and what He is still doing today . I pray
    You would not be afraid anymore that you would look to The one who loves you and ask how do I get close to you God??? Because I need you desperately and so does my daughter.!!! You can take this as an invitation to excepting Jesus in your
    Heart,, by saying a prayer to have Him come into your life like He has never come in before or just Or just keep going like you been. It's your choice. I excepted Him in my life as my Savior in 1981. And my life has never been the same FOR BEST ever.
    He'll never leave you EVER. Take a step in faith and
    And receive the free gift of salvationand everything wonderful that comes with it . Your daughter will notice a new brave mommy .Love and many Blessings to you .

  14. Shannon,

    I wish there was some way to comfort you right now. As I read your post, my heart broke along with yours. I continue to pray for all of you and send love to Emily. I hope that you can find the answers you are seeking and that you take the right path for Emily's journey. You have every right to make sure that the Dr's are doing their jobs well and I want to praise you for being so in charge and for seeking out all the options that you have for Emily. I know we are far away, but St Louis Childrens Hospital is GREAT! Not sure on their statistics with childhood cancer but I do know people travel from all over the world to come here. There are always stories on the news about a child who came here from one place or another to get treatment they couldn't get at home. Some internationally sought this hospital. Maybe an option, maybe not but at least worth looking into. I know your time is limited and you need to spend it with family so I pray that you can get a break and enjoy those babies. I am always thinking of you guys, hang in there. Even when it feels as if you are alone, you are not.

  15. I was so sorry to read about the MIBG results—I was so hoping that you'd get that beautiful NED result. You and Doug are doing a great job for Emily, and she's been stronger than any child should ever have to be. CHOP is a great hospital. One of my daughters had emergency surgery there when she was a newborn, and everyone we dealt with was just amazing. We're just outside of Philly, about 20 minutes from CHOP, so please let me know if there's anything we can do to help for the times you're in town.