Friday, October 28, 2016

Update and Scan Results

Hazel finished her third round of treatment, and it went very well! She felt felt pretty good the whole time, and even spent quite a bit of time up and out of bed. After coming home, she felt pretty tired and nauseous for a few days, but bounced back very quickly. She has been going to school, the pumpkin patch, sleep overs and play dates, celebrated both of her brothers' birthdays, lost another tooth, and has just spent time enjoying being a kid! Im so thankful for such gloriously normal time, especially leading up to her scans.

Now the scan results:

The scans have shown that the treatment is not working and the tumors have grown....Good news is that they have only grown a very little bit and the doctor believes the tumors are not very aggressive. The treatment probably worked in the beginning, but the cancer has already figured out a way to overcome it. It is probably helping to slow the growth, but this is just not enough. We want the cancer to be disappearing, not inching forward!!

So we are switching gears. Hazel will begin a new therapy that involves a targeted inhibitor for her ALK mutation, paired with two types of chemotherapy. The nice thing is that the ALK inhibitor is a pill to be taken twice a day, at home; and the chemo is every three weeks, for four days, and administered outpatient! The tough thing is that this chemo has a higher toxicity level. So she will indeed lose her hair, feel more unwell, and will become immune suppressed (causing more unplanned hospital stays and being less likely to go to school). They want to give her the next week off, feeling she is stable and strong, and then begin treatment the following week. We also will still continue with all of the complimentary and natural therapies we implement at home. We are literally trying everything we can!

The doctor is still remaining hopeful, because even though the treatment we all thought would work best, has not worked, we are not yet out of options. Not only are we not out of options, but the options we have left are still promising.  Hazel's genetic testing of her tumor came back, and it actually has a couple of different mutations that have targeted therapy. The ALK mutation, has the targeted therapy that is currently in use; and another drug, that is even more promising, that should be approved in the beginning of the year. If the one we try next doe not work, our hope is that she can remain stable enough to try the next one in the new year. The doctor said we have a bag full of keys, and one lock. We just need to find the right key. My worry is that because relapsed Neuroblastoma is so unbelievably tricky and clever, we may not have the right key at all. So please be praying that we find the right key!!!! Thankfully, because her tumors are not aggressive right now, we still have time to try and figure it all out.

To be honest, we were very disappointed to hear this news, but the more we spoke to the doctor and with each other, the more hope we are beginning to feel. We are still scared, unsure and overwhelmed, but we still have hope! And the bible says in HEBREWS 6:19 (the bible verse on our Hope for Hazel shirts) "We have this hope as an anchor of the soul. Firm and secure". So please be praying for our family that we can continue to cling to this hope and begin to feel the peace only God can give.

Monday, October 10, 2016

Scan Results

     Today was a very long day for Hazel and I.  We checked in early this morning for scans, which is a very long process.   She did not finish waking up from sedation until about 2:30pm.  Then we met with the doctor around 3:30pm to go over results, and then we were sent to get her first dose of her next round of treatment in the infusion center.  We finished this process at around 8:00pm so they decided to just admit us onto the oncology floor instead of having us check back in tomorrow morning.  We finally just got settled, so I can now fill you all in on the results.

     First of all, Hazel's bone marrow biopsies came back clear!  So this means that the cancer has still not spread to her bone marrow!  Her scans, however were not as obvious.

     The results of her scans are actually a bit complicated and convoluted. But after much discussion and deliberation with her doctor it boils down to this:  Her scans have changed since the last set of scans, but it is too difficult to tell if these changes are positive or negative.  The spot in her neck grew larger, but looks like it is not lighting up as much, and even appears that it may be dying from the inside out (but this may not be the case).  The other spot(s) in her abdomen are slightly smaller, but are lighting up brighter.  

     Unfortunately, the way that PET scans determine uptake, does not actually reflect Neuroblastoma very accurately.  So, these brighter spots could just be brighter because of inflammation, or indicating the immunotherapy is doing it's job.  But it could also indicate that her cancer is becoming more active.  It is not usual for a Neuroblastoma patient to receive regular PET scans for this reason.  Usually, children receive MIBG scans. These scans are Neuroblastoma specific, and only light up if there are Neuroblastoma cells, and not for any other reason (with the exception being scar tissue related to previous Neuroblastoma spots).  Hazel did not receive the MIBG scan this time because the one she received in August did not light up, when the PET scan did.  The doctor does not really like doing PET scans because it does not give her the information she is really looking for, however, we needed to do these as a comparison.  Unfortunately, the results were so mixed that it did not give us an accurate comparison.

     So we had to spend much time discussing whether or not to proceed with the current treatment Hazel is on, or to try something different.  Most kids who respond to this treatment, do so fairly quickly, so the doctor is concerned that she did not show a very overwhelmingly positive response. So her first thought was that this may not be working, so we should move on. But again, with the PET scan not giving us the most accurate data, we may not really know if she has responded or not.  So we have decided to do one more round of this chemo/immunotherapy combo this week, and in two weeks have her do an MIBG scan.  The hope is that the original MIBG scan did not light up because we were so early in Hazel's relapse, and that it has been long enough for it to show up.  So maybe we can get a better idea of what is going on in there.

     This does, however present us with a couple of dilemmas.  The first is that we are continuing a treatment that may not be effective for her, which, in turn would only be allowing this cancer to grow these next two weeks.  I pray that this is not the case, but if it is, we will move onto something new immediately.  More than likely, it will be the directed therapy for her ALK mutation.  The second, is that this is working, but her new tumors are no longer MIBG avid and will not light up on the MIBG scan either way.  If this is the case, we will do another PET scan to see if we can see any changes from these last two scans.  Both the PET and the MIBG scans are also done with CT scans, which is the scan that gives us our measurements, but does not measure cancer activity.  So we will still get measurement comparisons with both scans, which is good.  

     As you can see, we got a lot of complicated information today, and I didn't even share all of it.  My brain is on overload now, and I am in a bit of a fog, so I hope that this is clear enough for you.  But really, all I need to make clear is that our little Hazelnut still desperately needs your support and your prayers as we continue treatment, trying to make the best decisions, and follow this disease closely.  

Tuesday, October 4, 2016


     I have been meaning to post this update on how our little Hazelnut coped with her second round of treatment, but to be honest, I have just not had the strength.  Not because Hazel struggled through treatment.  In fact, she did remarkably well!  Her pain and itchiness was so well managed, that she did not complain one bit.  Besides being run down, she felt fairly well!  She even got out of bed every day!  
     I have just not had the strength because our week being home has been exceedingly overwhelming.  Our first few days are generally difficult, because Hazel doesn't quite feel herself yet, and I have to transition to being a mom of one, focused on just one thing, the care of my daughter; to full time homemaker, mother of five, wife, chauffeur, housekeeper, meal arranger and preparer, etc, etc... I have found that, so far, these transitions have not been easy ones for me.  However, I also find myself being immensely thankful for just being home.  It can sometimes be a battle in my mind over which emotions win.  Then, Hazel developed a cold (not really a big deal), but also mentioned to me that a molar was loose.  Not just any molar, but one of the molars that was crowned due to deterioration from prior treatment. So after meeting with the dentist, we discovered that her tooth was infected, and we needed to have X-Rays done to see how to proceed.  The X-Rays confirmed that her tooth is beyond repair and will need to be extracted.  Just one more thing to schedule and to worry about, and for my little Hazelnut to cope with.  On this very same day, Hazel spiked a fever of over 101.3 degrees fahrenheit, which in the cancer world, earns you a coveted spot in the Emergency Room and CHLA.  We spent the whole night there.  Thankfully, her labs came back and all her numbers were within normal and safe range.  They gave her a dose of antibiotics and sent us home at 4:00 in the morning. So, needless to say, our week at home was not uneventful!  Despite the fevers, infection, long appointments and fatigue, Hazel still bounced back very quickly and showed us all that she's got this!  She even got to go to school on Friday!

     In addition to all the happenings going on with Hazel, our Neuroblastoma community lost two children this past week, both of whom I either knew personally, or followed very closely and became friendly online.  On Friday, I attended the funeral for one of these children, Eli Gradon.  Eli was a remarkable young man, with an equally remarkable family and community.  His father Mark, always by his side, never failed to be there for every other Neuroblastoma family he knew and saw at the hospital.  Just such a gracious and kind human being.  While difficult, there was something that happened at the funeral that just struck me.  During his speech, Mark spent almost the entire time giving his heartfelt thanks and gratitude to those who helped his family.  Then, at the end, he mentioned several cancer fighters by name who are still in the fight, including our Hazel. He said that they will continue to fight in honor of their son, and in honor of our children, so that that can be healed once and for all.  This right here. This is our community.  A father, bereaved by the loss of his son just the morning before, standing in solidarity with other families so we don't lose hope.  Mark, if you are reading this; thank you.  Thank you for being you, and for sharing your son and your family with all of us.  Thank you for speaking healing for my daughter.  Thank you for not giving up the fight.  We love you.
     I also have been struggling with anxiety because Hazel's doctors have scheduled her first scans to see if the treatment is working, and they are scheduled for TOMORROW. I would have liked to have included you all in on this detail sooner, but as I said before, I just could not sit down to write.  My brain was not connected to my hands this week.  Hazel will also meet with the dentist at CHLA and receive a bone marrow biopsy(on Wednesday).  Hopefully we will have results to share on late Tuesday or Wednesday.  If not, we meet with her doctor on Monday afternoon, right before beginning her next cycle of treatment that evening.
     So please be thinking about and praying for Hazel and our family throughout the rest of this week.  Pray for good results from these scans.  We want to see this cancer already melting away!