Updates

One of the photos Madi took for a photography class she is taking with other cancer patients.

I know it has been quite a while since I posted any updates on here.  I can always tell when I need to update because I get a steady stream of emails and texts asking me how we are doing. :) Oh how grateful I am to have so many so aware of our situation and poised at the ready to help if needed.  What an incredible and indescribable blessing!  Thank you to all of you who regularly think and pray on our behalf. We feel the power that comes from that more than you can possibly know or understand.

A lot has transpired in the last two months, but then not a lot has changed either.  I'm not totally sure how to report everything except to say we still hang in the web of uncertainty on all fronts.

Madi has had three rounds of immunotherapy.  She goes in once every three weeks for an infusion.  Though the actual treatment does not last too long, we still end up at the hospital for a good 5-6 hours each time.  It's become a wonderful bonding time for us.  While her needle phobia is REAL, after the needle is in to her port, she relaxes and we just enjoy hanging out. We eat snacks and watch movies or Studio C.  I sometimes read aloud to her or we play games.  I love that I have been able to accompany her and spend so much quality time alone with her.  I will treasure these times with her in my mind forever- they emotionally feed us both, even though being at the hospital is a drag.

As far as how she is handling the treatments, we cannot complain.  The side effects have been minimal.  She gets bouts of mild nausea that usually disappear once she eats something.  She still tires easily, but she's not as exhausted as she has been since radiation.  And while she still gets the occasional passing headache, she usually does not need to take any kind of medicine to treat it.  By and large, she feels really good and acts quite normal.  She is going to school, but only for half the day since the full days she atttempted in the beginning of the year just wore her out emotionally, physically, mentally, and socially.

This may have been obvious to everyone else, but I did not realize until about a month ago how much brain tissue was lost during the tumor resection. Glioblastoma does not grow with nice, well defined boundaries. It infiltrates the brain through tenacle-like growth and mixes in with healthy brain tissue.  I knew this, but I guess I assumed the bulk of the mass was just tumor and that only the periphery branched out into blood vessels; but this was completely wrong.  The tumor was so intertwined with the brain tissue that they had no choice but to take out brain and tumor about the size of a mandarin orange.  Since the brain does not grow back or regenerate, it is a little unsettling to see a gaping hole in her MRIs.  The tissue they removed controlled cognitive function (emotional expression, problem solving, memory, etc.) and also partially infiltrated the area controlling movement.

I admit that my heart sank even more when I found this out, but almost immediately the realization of what a miraculous recovery she has had crept into my thoughts. No wonder the doctors worried that the second surgery would land her in a rehab hospital for 6+ weeks relearning how to walk and talk!  That was a lot of brain to lose!  I still feel like her recovery directly resulted from the outpouring of fasting and prayers offered on our behalf.  She has had no motor delays and while it takes her a little longer to string sentences together now, the fact that she still communicates so effortlessly and with such an extensive vocabulary is truly awe-inspiring!  Her brain is rewiring really quickly. One of the doctors mentioned how amazing children's brains are at recovering from trauma like this and rerouting and I have really seen this.

We will have the next MRI in about a week.  That will tell us more about what the tumor is doing. WELL, more accurately, the MRI will give us more information... more data points.  Unfortunately, immunotherapy can cause swelling in the brain and it is often difficult to distinguish cancer-induced inflammation from therapy-induced inflammation in a brain scan.  In the early stages of testing for this drug, they thought the swelling was tumor re-growth, but when they went in to surgically remove it, found out it was just a response to the immune system kicking into high gear to boot the cancer. They have some sophisticated ways of trying to differentiate, so now we are praying not only that this therapy will work, but that we will know if it is working.

Another realization I had in my two month blog hiatus is that the immunotherapy- while really effective in some organs of the body- hasn't been very successful in brain cancer.  Some surmise that this may be due to a lack of sufficient immune system T "soldier" cells in the brain to attack the cancer.  I knew that the success rate was low, but I did not realize it was only a 5% rate of response.  Ugh.  My heart sank even lower when I discovered that.  The one thing Madi has going for her is the rarity of her genetic mutation and her age. In other people with her specific genetic makeup, the medicine she is taking results in a 40% response rate in other cancers in the body (colon, lung, skin) though they are usually adults.  We have not read about any children who have her same mutation. If we are going to use statistics to give a chance of success, I guess it would rest somewhere in the 5-40% region: a minority chance all around.  However, since we seem to specialize in being part of the rare subset of the population these days, we are hoping this is the one time it will work in our favor.

Kurt and I have also begun our plan B (and plan C and D) arrangements if this therapy does not seem to be having much effect.  We want to make sure we are losing the least amount of time we can between treatments if a newer technology might be the thing that can help her the most. Kurt is so good at staying on top of the research, and we have gotten connected to so many good resources and people who have helped us look into new possibilities for her should we need to take a different course of action.  These other options are considerably riskier and we have very little evidence (especially in children) that they will work, so any of these alternate paths will bring a whole new set of worries.  We are just really hoping that the current therapy works.

Meanwhile,  the baby is still kicking, and I'm almost  37 weeks along (that's nearly full-term). His due date is November 16th.  My OB seemed slightly surprised that the baby has made it this far.  The last ultrasound showed very little amniotic fluid because there seems to be a partial blockage somewhere that is preventing the fluid from leaving his body after he swallows.  BUT, I feel him hiccup a lot, which means he is swallowing and practicing breathing.  So there must be some fluid circulating.  The last ultrasound also showed a normal doppler (which measures oxygen to the fetus), which is great.  What we do not know is how extensive the blockage is (or if it can be easily fixed), nor do we know how developed his lungs are, since amniotic fluid circulating through the baby's lungs and stomach is what allows his lungs and digestive system to develop.  We will discover all these things once he is born.  For the time being, he is safe, relatively healthy as far as Trisomy 18 goes, and continues to grow.  I frequently remember that if I count this time he has been growing in my belly, I have had him with me for nearly a year already and that is just glorious.  I hope everyone else gets to meet him, too.

As for the rest of the family, because things feel so normal right now, it is sometimes hard to remember that we are in the eye of the storm. That hard things are yet to come.  I convince myself that I am back in my old life dealing with little problems that don't matter much in the long-run.  This only works in short bursts, since we are constantly reminded that things AREN'T normal and probably won't ever be the same.  And so life continues to ebb and flow with happiness and grief.

One of the things I have struggled with most is the feeling of helplessness I feel on a continual basis.  The realization that I'm really not in control of anything has been at once frustrating and liberating.  Mostly frustrating, I admit.  How I can be frustrated by not having any control, but I also simultaneously feel exhausted by decisions, I do not understand.   One minute, I find myself feeling agitated that the doctors scheduled out all these appointments for us without consulting us AGAIN and then the next minute I find myself agitated when Kurt asks me which shirt he should wear. A couple weeks ago, the bagger at the store asked me if I wanted one or two bags for my groceries, I helplessly responded in an exasperated voice, "Will you please decide for me?"  I am trying to learn the art of delegating out the inconsequential decisions that seem to deplete my energy, but still hang onto the bigger decisions.  I have so much respect for my husband who does this regularly with grace and aplomb.

Of course, the underlying issue in all of this is the naked realization that we actually have very little control over our lives at all.  I feel like the little kid on the amusement park ride who has suddenly discovered the pedals I'm pushing really DON'T have any affect at all on the movements of my vehicle.  Regardless of all these decisions we're making, it feels that fate will march its course steadily and we will have to accept that course even if we pedal as fast and as hard as we can.

I am slowly experiencing the peace and solace that comes when I just let go. I have stopped trying to tell myself not to worry.  I have stopped trying to avoid the thoughts that come when I think of what could happen without the miracles I so desperately hope will happen.  Sometimes I have to go there... to that scary place where I have four children instead of six.  Sometimes I have to cry hard and admit that we have no control in the end.  Oddly,  just visiting that place is extremely empowering.  I come back to our current reality where I have all six babies with me, and I can see now that our homeostasis is peace and happiness.  We may temporarily depart from it for a while, but we will come back because it is home.  We will be ok, whatever happens. Once someone has tasted the fruit of joy and love and belonging, I think she never could be settled with anything less than that heaven.  I feel more certain now than I ever have that we will make it through all of this mess and be stronger and better afterwards.  And when we are all together again, it will be beyond happy. It will be a word that I don't even know yet :).  And it will look a lot like the picture above that Madi took for her photography class a few weeks ago.

Life is sweet right now.  We are reveling in the time we have and the time we will have.  For now,  that is enough.

Love to all of you!