Judson L.’s Story

Site created on December 9, 2017

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  Here are Judson's words - I've been thinking about how much people care, and how kind they are.  It's amazing.  LIke everyone, my friends, nurses in the hospital, classmates, neighbors.  It's astonishing how kind people are.  I'm somewhat anxious about needing a bone marrow transplant.  It's really big, hard to think about.  It doesn't seem impossible though.  Many people before me have done it.  So, I'm ready to get it done.

Newest Update

Journal entry by Anna Loney

This week marks one year since transplant on March 8, 2018.  It is an ongoing story.  

The once a month blood labs Jud has rec'd since September have shown steady growth of his new marrow, increases of red cells,platelets, and white cells, all the products of our marrow, have been steady.  And along the way he's remained healthy, not shown any evidence of rejection or malcontent between his body and the donor's marrow.  But the docs follow up at one year post-treatment with a whole variety of tests, so that was part of this week's adventures for us.

We drove to Mpls. last Mon. and stayed over at Linda's condo til Wed.(this is where we crashed for the months of our outpatients post-treatment phase).  Timing was everything as we finished up and departed Mpls. just before  the arrival of Linda to attend the arrival of her first grandchild on Thursday.  Congrats to them.  The baby was born at the same hospital, U of M Children's Masonic, where Jud receives care.    

Judson met with his doctor's team, for a physical.  Sadly his head doctor was down with flu and didn't join the party.  It's seems really unfair when doctors become ill, knowing the lengths they go to, untold precautions, face masks, fervent handwashing. But as we all know, they too are human.  Other appointments included echocardiogram, abdominal imaging,  rheumatology consult, and pulmonology testing.  The pulmonology tech announced that by her calculations since Don last took Jud to her lab in June, Jud's acquired an addt'l 3 inches in height.  He's now 5'9".  Courtesy of Physics class this year, Jud was able to explain to the tech the way Boyle's law comes into play for measuring a volume of gas, the volume in question is his lungs, when he's sitting in a clear plastic chamber designed to measure this.  She noted that he's the first of her pediatric patients to cite Boyle's law, and its application.  Most of what I remembered about our first visit to this lab, a year ago last February, was that Jud needed a wheelchair to get there at that time.  I'm always reminded of how great it is to go places under our own steam, as it were, and thanks, Mr. Boyle.

The big event of this visit was a bone marrow biopsy. A drug regime of fentanyl, for pain suppression,  propyfol for sedation and zofran to prevent nausea is always the deal for a biopsy, and works like a charm.  I have to admit thinking of fentanyl in positive terms, under our circumstances.  He always awakens, ready to get out of procedure-land and go eat a giant burrito. They put a little compression band-aid on the spot high on the back of the pelvis where they've drilled out a hole and taken a marrow sample.  Easy.  Now why it is that grown-ups have to stay awake for this routine, I don't know.  Rumor is they wind up a lot more shaken and sore for having done it with only local anesthesia.

Another kindness of his anesthetized state was that he received vaccinations simultaneously.  Believe me, it's not really an option to go anti-vaxx after medical science has poured a million dollars into your kid's survival.  Maybe it is possible, but they really don't want to save you only to see whooping cough take you out. . .and it could. Jud got 5 vaccinations in his arms, all killed varieties, as his system can now tolerate and accept these.  The vaccines he rec'd were the same as for a newborn.  All his childhood vaccinations and subsequent immunities were wiped out by chemo and radiation.  An added incentive for vaccination post-BMT is that they've tracked better outcomes, fewer instances of things even including cancer with vaccinated patients - it's the right course to take. 

Jud's doctor just corresponded with us today to provide information and reassurance about the findings of the extensive bloodwork and biopsy results.   The biopsy showed "good cellularity, complete chimerism, and no abnormal cells".  HURRAH!  That's what we've needed to hear.  It's been a bigger stressor than I imagined, wanting to get this one-year mark and obligatory testing out of the way.  It's good to be here, and in this way.(Chimerism is a really interesting word and concept, it explains the fact that his blood(donor's) and body chemistry have different DNA profiles, but the Jud's blood now reflects only the donor's inciting presence- engraftment is complete.)

Now for Judson, next steps  after his testing this week were vertical ones. He needed to go have a few hours on a climbing wall before we departed the Cities for home.  He's pretty interested in climbing.  And despite having been sedated and drilled and poked and prodded on the day before, it just didn't seem to matter.  Wow, he's back to being much more like a 15 year old.  But here's his next mild medical intrigue.  He's got ferritin, that's iron levels, about 11 times more than normal.  This is a consequence of all those blood transfusions he rec'd.  So, having put all that blood into him.  Now the procedure is to start taking it out.  Good old fashioned blood letting will cause his body to utilize the stored iron to make more blood.  We don't know how much blood letting or for how long, and neither can we just bop down to the dentist to fill up a bowl or two, 18th c. style. We'll probably be visiting the Mayo for this.  Time will tell  how this plays out, and that will be another chapter, along with the ongoing saga of Judson's education.  Will he ever be a happily engaged student again?  Stay tuned.  We'll write more on the topic.

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