Caden Shrauger

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Antibodies Cycle 4, Day 2

18 hours ago

You get a mom’s perspective tonight.  Often different, more abstract, and more self-centered than dad’s.  Although outward appearances may often show otherwise, I prefer to be more withdrawn and handle challenges internally.  Just who I am.  I think a lot.  Yet, when I do make the time to write, more emotion and feelings come out.  So, for what it’s worth, Dad gets a break tonight.  And much deserved one, I might add.

Sometimes it feels like drowning.  Like you are beneath the surface, struggling, using all of your might to get to the top, thrashing about.  And other times, you feel like if you just let go, try not to swim, have some faith, you just might float to the surface.  And when you get there, you'll just be thankful for air.  You won't be thinking about anything else, just air.  Something we all take for granted, until we need it.  That's what this journey often feels like to me.  Like I just can't wait to get to the surface so I can be thankful for air, to be in that place where the every day drag of our child's intense cancer treatment is behind us.  Once at the surface, there will always be the fear of being pulled back under, deeper.  But, you have to get there first.  And do you swim or float?

Yesterday Dr. Park stopped in, presumably due to all of the anxious questions we have been asking her team about the scans two weeks ago that they have not been able to answer.  Jason forgot to put it in yesterday because we really didn't get any answers (but do we ever?).  To start, Dr. Park is not one to sugar coat anything.  She tells it like it is.  She is the ultimate reality check.  My heart stops when I see her.  She is a knowledgeable, competent, established neuroblastoma doctor.   I trust her.  She holds so much of Caden’s life in her hands.  It’s scary, just plain scary to hear her perspective.  I imagine how many times a parent has looked at her, with their eyes pleading, to just give us hope.  And she can provide options, but no guarantees.  She is a realist.  And in the world of high risk neuroblastoma, reality is not an easy thing to hear.  She does not give false hope, but she does provide hope.  Her whole career is centered around saving these kids.  For far too many, she cannot.

The first question was about the spot that lit up on his MIBG scan in his abdomen that the radiologist made reference to as a possible sign of early relapse.  And the reason we get a little anxious about this is that relapsed neuroblastoma, as I read in a recent journal article, is almost always “uniformly fatal”.  There are trials for it, but none that have shown great, amazing potential.  Most doctors say they buy some time.  Anyways, Dr. Park does not feel this is early relapse.  The area that lit up does not correlate to any masses on the CT scan, but there is certainly a spot on the MIBG scan (she showed me).  She believes it is some MIBG that was retained in the bowels or the kidney.  She explained that for something to light up on the MIBG scan, it needs to measure in centimeters.  On the CT scan, they can see in millimeters.  There is nothing abnormal there in the CT scan.  She did say that it is not impossible for something to be hidden on the CT scan, but that it is likely some MIBG sitting in a normal, non-cancerous spot.  She would be much more concerned if it were in a bone location.  We hope and pray she is right.

Our next topic was his sphenoid bone.  She is a bit more concerned that this continues to persist, but this is also often the last place for it to leave.  We are nearing the end of standard treatment for high risk neuroblastoma.  So, what if it is still there at the “end of treatment” scans (probably late August or early September)?  And even if it appears to be clear on scans, do we actually believe that?  The real discussion on this topic will obviously occur at that time, but she did indicate that she would likely recommend a wait and see what happens approach, but maybe scan every two months, rather than three.  You see, the dead cancer cells that have not been absorbed by the body or differentiated neuroblastoma cells (called ganglioneuromas), can still show up on the MIBG scans.   She mentioned that we could try to have it biopsied, but it would be a very difficult and dangerous biopsy given the location, and it wouldn’t give us the full picture anyways, just one little point.

So, my follow on question was, if it is still neuroblastoma and starts to grow back, are we at a disadvantage for giving it a chance to do so?  She could not answer that.  She said a few things that were hard to hear.  She noted that Caden’s cancer has been resistant to treatment already.  And one of the reasons relapse is so hard to treat (I asked) is because the cancer cells that are left behind and start to grow again are the ones that were resistant to treatment in the first place, and often they mutate, too.  I also asked why is it that older children (meaning older than 18 months) are harder to successfully treat.  They don’t really know, but recent research is suggesting that the biology, down to the genetics, of the cancer is different and harder to treat.  Anyways, she seemed to be of the perspective that the prevention of relapse is hard to do.  That if those tough little tumor cells are there, they are going to find their way back, no matter what we do.  But, we are not there yet, right?  We are still trying to get to the surface here.

So, where are we at?  Good question.  And probably why this was not in Jason’s post last night.  We don’t know when the end of treatment will be.  We could be entering a wait and see period in September if things still light up or are clear. Or, we may be looking at treatment or trials in other locations (Grand Rapids, New York, Houston, Philadelphia – are the first on my list, but don’t start getting too excited over this, like telling me people we could stay with, please.  We are still a very long way from that point, if it even gets there, but I just wanted to put it out there because lots of people have been asking, and that’s kind of the point of this blog is to relieve a bit of the question answering on a individual basis).  I do know that more antibodies in Seattle are not an option.  So, at a minimum, I think we may be getting a few feelers out for second opinions.  To swim or float?  Thankfully, we are not at a decision point right now.

Wow, so that was just yesterday…  Today was a bit challenging, too.  It all started with Caden’s morning labs, drawn at about 2am.  The numbers in it were just plain funky.  But his creatinine, an indicator of his kidney function, had jumped, meaning his kidneys were not functioning very well.  So, the decision was made not to do the IL-2 infusion today.  This does not delay things, he just won’t get it.  Of course, we don’t like this.  We want him to get the full treatment, but it would endanger his kidneys too much to force it, so we float.  A second lab was ordered.  This one was not nearly as funky.  His creatinine was still up, indicating his kidneys are functioning at about 50% of normal, so it’s hard to say if they still would have held the IL-2 infusion with good labs since 50% is the threshold, but they will re-evaluate based on labs tomorrow morning.  What will likely happen is they will do the IL-2 at a half rate to start and go from there.  Dr. Park tells me this happens to about one-fifth of patients.  Pray for pee!

He did get the antibodies, though.  And he still had some issues with hive-type rashes and was feeling pretty yucky most of the day.  He slept quite a bit and wanted to cuddle and be “tucked in” a bunch with all of his vital and rash checks, but he did eat and drink some and spent some time watching TV.  He didn’t want to get out of bed at all, even to sing Happy Transplant Day to our dear little friend, Allistaire.

So, back to the eating.  They really want him back on the NG tube.  Hypermetabolic they say, and they are concerned about his future growth as a result.  We just want whatever is best for him, whatever “that” may be.  We just don’t know what “that” is because we didn’t see a whole lot of benefit from the tube.  But, in this case, I think we need to float and go with the experts.  Except when it comes to placement, and then I swim.  Our nutritionist and child life specialist are very in tune with and sensitive to our difficulties here.  So, to make a long story (afternoon) short, several discussions were had and options evaluated.  We have been told that we are lucky to have a good attending team and they are working to get conscious sedation for Caden through interventional radiology on Friday for the tube placement.  He will be awake, but calmed and would not remember it.  This is not the norm.  They are reluctant to do it.  But, we did our best to insist without being one of “those people” (which we have heard you almost have to be in order for them to consider this).  Anyways, we are very thankful that our team is taking Caden’s best interest into consideration.

I want to see the light, to see the surface within our reach.  It’s hard because everyone asks when we’ll be done with treatment.  The honest answer is, we won’t know until we’re there.  So, we swim, float, always striving for the surface.  One day, one treatment at a time.  We hope for the best, plan for the worst.  I have faith we will get to the surface, but being underwater for so long is exhausting.

FC