Mixed Results on CT

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IMG_8467How many times have I been verbally harassed about “just giving an update,” rather than waiting longer to give the fuller picture – ultimately, a picture I believe to be far richer and more significant than the “data.”  I’ve resisted this pressure to just state the facts for a long time, because in the end, the facts will not be what endures.  But, yes, tonight, I’m going to mostly just give you the briefest of updates.

Dr. Pollard and I, along with the collaboration for the SCCA docs, planned that the CT today would not only be a follow-up to the CT from a month ago to look at pulmonary nodules (fungus in the lungs), but would also look for recurrent disease.  The first week of June is when we will have to come back and do a whole series of tests for Allistaire’s one year post-transplant follow-up.  This would include, amongst other things, a bone marrow aspirate to look for disease in the marrow and a CT with oral and IV contrast to look for any disease elsewhere in the body.  Some may remember, that at the worst point, just before transplant, Allistaire had disease in 8 places outside of her marrow including her back, quite a few of her lymph nodes, the growth plates in her knees and her chest wall.  Rather than doing two CTs so close together, we decided to roll the two into one.  This was partially spurred on by my recent discovery that one CT can be equivalent in radiation to 250 X-rays.

Thankfully, today’s CT did not show any evidence of leukemia – such a relief!  Thank you Lord!

However, the CT today did show pulmonary nodules “too numerous to count,” and that those of larger, more notable size, had increased in size.  To add to the complexity of the picture, Allistaire’s eosinophil count, one of the white blood cells, has skyrocketed. The normal range is 0-400.  A week ago it was 4,500 and today it was 8,160.  The good news is that her other blood lines look totally normal (platelets 220, hematocrit 39.6 and ANC 5440).  The question is whether these two issues are related or separate.  When the high eosinophil count first showed up, it was decided that Allistaire would have an endoscopy to look in her esophagus and stomach to see what’s going on.  Eosinophilic gastritis, which is from what I’m told, essentially an allergic reaction, could be a possibility.  I was of course concerned about GVHD, but I am told that it is not typical for eosinophils to rise this high and fast due to GVHD.  A few other infectious options were ruled out with a stool sample done last week that was negative for all infections tested.  However, the stool sample did show presence of white blood cells which are indicative of inflammation somewhere in the body.

At this point, a number of tests must be conducted and results returned before we can really know what’s going on.  So here’s the plan, tomorrow morning (Tuesday) at 11am, Allistaire will get an endoscopy and a BAL (Bronchoalveolar lavage).  The endoscopy allows the doctors to get a visual of what’s going on inside her upper gut and to take tissue samples.  With the BAL, they will put fluid in her lungs and then remove it in order to then see if fungus grows and if so, what kind.  It is possible that she has a fungus that neither the voriconazole nor the new drug, posaconazole, has been able to target.  Dr. Gardner said it is possible that the eosinophils are on the rise as a result of trying to fight what’s going on in her lungs.  Then Wednesday, the poor sweet girl will have to have yet another IV placed (she absolutely hates this part) and at 11am have a lung biopsy conducted.  This should only be a needle biopsy so it will not be overly invasive, but she will have to be admitted to the hospital following the procedure for about 24 hours of observation to make sure she recovers fine.  Dr. Gardner originally wanted to admit her today, not because she is in any perceived imminent danger, but because it can just be easier and faster to get all the various teams of doctors in to see her.  While she is inpatient, the Infectious Disease team and Pulmonary team will come by to see her.  As you might imagine, I resisted pretty heartily the idea of being admitted.  Allistaire has literally never walked back into the Oncology Unit since the day she was discharged last July.  I have only been in once.  I DO NOT want to get trapped there again.

So, it will not be the most fun few days, but hey, there does not appear to be any evidence of disease outside of her marrow at this point, and for that I am overjoyed!  The parts that are not fun are getting poked for IV’s, not being able to eat or drink a lot in anticipation of anesthesia and of course, the possibility of getting stuck in the hospital.  Originally, this was hopefully going to be a one day in Seattle trip, but when do things just go perfect and smooth for us…uh, pretty much never.  I pray the Lord will give the doctors wisdom as we get test results back later in the week so that we can all be confident in the diagnosis of what’s going on and the best way to treat it.  If it is a different form of fungus, it’s possible they will need to give Allistaire IV anti-fungals.  I don’t know much about this other than it could very possibly require some sort of line (hopefully just a pic line) and months of treatment.  I am told it could be outpatient but I don’t know at what frequency or if it could be done in Montana or what.  So much is up in the air.

As sweet Dr. Gardner, relayed her thoughts and the plan she was trying to put into place, I said, “You know, Allistaire’s Make-A-Wish trip is coming up on May 18th.  I know that’s not the most important thing but….”  “No,” she said, “It is important.  She is going on her Make-A-Wish trip.”  You see, we’ve told almost no one about the trip because of the fear of just such a thing as this happening.  We haven’t told Allistaire or Solveig, because it would break our hearts to have to then take it away.  In the scope of all that matters in life, it feels trite to say that a trip to Disney World counts for much, but I think in our case, it is so much more than just a fun trip.  It is that tip of the iceberg sort of surface evidence of a much deeper and more massive reality.  I so want my sweet girls to explode with excitement and joy and just have the chance to be indulged in extravagant, childish delight.  “I’ll do whatever you think is best Dr. Gardner.  I will.  And I’m just really hoping somehow we can have this worked out so we can go on this trip.”  She totally understood and is working hard to care for both Allistaire’s flesh and her little spirit.

As Allistaire and I waited in the dining room of the cafeteria, finally eating our lunch, and waiting for when her 3:30pm clinic appointment, and thus CT results, would finally arrive, I was reminded that my life is not held in suspension.  My life does not begin with good CT results.  I can’t keep holding my breath, hoping all is well and we’ve made it through.  I can’t keep subconsciously waiting for my life to “get back on track.”  My life is now.  It is this moment -whatever that moment looks like – it is full and available for feasting upon, for gobbling up the manna of the present.  In the two hours we waited, I was repeatedly compelled to soak in the wonder of my daughter.  I sought to watch her face intently.  To note the details of her expression and the sound of her voice.  I stroked the incredibly soft skin of her wee little neck and hugged her small rib cage.  There was so much to partake of, so much bounty.  In this moment there was the enjoyment of my little girl without knowledge of disease and I knew that in a short period of time that could all change.  And I would love that girl too, that girl who might have lumps of leukemia hiding out in her flesh.  But right then, I simply had my sweet girl who has battled cancer.  There is no such thing as, “time to kill.”  Life is now.  There is no check list, real or imagined, that must be complete before we can get onto “real life.”  This time in Seattle isn’t how I’d like to be spending my time.  I have these goals in my mind, things I’ve had to set aside for over two years.  I am constantly tempted to evaluate my life in light of where I am at in terms of accomplishing those goals.  That will just leave me frustrated and dissatisfied.  Rather, I am striving and asking God to enable me to more and more be content, at rest, with exactly where I am.  This isn’t static rest though, this is an active pursuit of now and the fullness of now, the bounty that is right in front of my eyes.  This is a delighted acceptance of the gifts given to me today.  In my peripheral vision, I think I am seeing that this sort of living will amazingly result in a future bounty far greater than if I fix my eyes on accomplishing my goals.  Maybe it’s because my goals are so wee in contrast to the “goals,” God has for me.  I am too wee and too finite to see the grandeur and scale of God’s goals.  So He tells me, just look at what I’ve given you today.  Rejoice and be glad in it.  This is the day, this is the day, this is the day that the Lord has made.IMG_8471 IMG_8466 IMG_8460 IMG_8454

6 responses »

  1. Hi Jai. I am thrilled to hear that no leukemia was found on the CT scan. Prayers that this fungal business gets figured out and that treatment doesn’t interfere with your life too much. Your update spoke to me, as usual. Particularly what you said about not putting life on hold while you wait for results….again and again. I still do this. I feel like we live life in increments, between oncology check ups, and as that time gets closer, I start to kind of implode. Something I need to pray on. Thank you. Hoping you all get to have the most magical trip to disney!

  2. Always good to get an update, though I well know how exhausting they can be. Will be thinking of little Allistaire as she gets her IV (Emmys worst part too) and subsequent treatments. Thinking of you guys always.

  3. Hi Jai, Your Mom has been my BSF TL for about 10 years. I check in on your blog regularly so my husband and I know how to pray for you all. A few days ago, I was readying the Beatitudes in “The Message”. Your blog today reminded me of Matthew 5:5 “You are blessed when you’re content with just who your are – no more, no less, That’s the moment you find yourselves proud owners of everything that can’t be bought.” Your blog has been and encouragement and a blessing and a teachable moment for everyone who reads it. God is at work in you and through you. We continue to keep your family in our prayers. Patti

  4. Thank you for letting us know where you are, where things stand (even if in limbo, it helps me know how to pray). I was thinking of you today and yesterday, wondering how to best pray for your family now, wondering about all these things you mention, even briefly. I love your heart, I love how God is shaping you into a beautiful, fragile, imperfect vessel of His grace and glory, and I love those blonde curls. Continuing to place you, Allistaire, Solveig, and Sten before the throne of grace. With confidence. Well, mostly confidence. 🙂

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