Saturday, January 28, 2012


I mentioned in a previous post that I went to a hospital-sponsored support group the other night.  I had high hopes for it to be a healing place where I could open up and connect with other parents going through similar trials right now, but it didn't turn out exactly how I expected.   

I was a little nervous when I walked in the door and found exactly six people there.  Me, the social worker, the chaplain, a Spanish interpreter, a Vietnamese interpreter, and a woman who spoke only Vietnamese.   I was honestly tempted to walk out right then and there, but then the social worker mentioned that she thought more people would be coming soon, so I decided to wait it out. 

However, upon the commencement of the meeting and hearing the low constant mumble of the Vietnamese interpreter translating every word that was spoken, I started concocting ways I could finagle my way out of the meeting. 

Bless the social worker's heart, she tried her darnedest to engage both of us in opening up and sharing our thoughts and feelings, but if you think listening to someone talk with an interpreter sitting 3 feet away madly translating every word was hard, talking with an interpreter sitting 3 feet away proved to be even worse for me.  I found myself obsessing over whether Mr. Vietnamese Guy could translate what I was saying correctly, or if I needed to slow down or pause for him.  In the end I spouted a whole bunch of disconnected mumbo jumbo--probably all translated very accurately. 

I never did leave and instead of the whole night being a wash, I was fascinated when Hung (the Vietnamese lady) shared how her daughter (also a 16-year-old AML patient) came to her diagnosis.  They too had to go through a process to get there and in the end, she was diagnosed by a doctor other than their normal doctor. 

Her words, via the interpreter, really got me to thinking about my feelings about how everything happened in Spencer's case, especially recently realizing that Spencer's original trip to the doctor was on December 9th--an entire month previous to when he received his diagnosis.  

I remember leaving that original appointment rather frustrated  that the doctor had really focused her energies on only one of the symptoms (the headaches) and didn't even attempt to link the headaches and the vomiting all together.    I mentioned the vomiting several times during the visit and made it clear that the vomiting was much more interruptive of Spencer's life than the headaches were, yet even when she weighed Spencer and discovered that he had lost 15-lbs. since June,  she still wasn't concerned.    I left the appointment mad at myself for even mentioning the headaches when he was much more bothered by not being able to exercise. 

In all the reflecting that the support group meeting triggered in me, I realized that although I've certainly wondered how things would be different if his diagnosis and treatment had started a month earlier, that I harbor absolutely no regrets about how we approached Spencer's care and I feel no ill will whatsoever toward the pediatrician who missed the diagnosis a month earlier. 

I know that Spencer's presentation of symptoms was really unusual.  In fact none of the oncologists at the hospital had even heard of vomiting only when exercising as a symptom.  He had no bruises, no rashes, no fevers, and none of the other tell-tale leukemia symptoms that would have alarmed his physician (and mother) more.   Everything was vague and explainable by other things. 

And in retrospect,  I am deeply grateful that this big upheaval in our family occurred right after the holidays, rather than right before them.  We had a wonderfully laid-back Christmas and New Year this year--probably more laid-back than we'd ever had before.  We didn't travel anywhere.  We didn't go to any parties.  We didn't have any out-of-town guests.  We just spent a lot of quiet time together as a family and now I will always treasure those holiday memories as a gift of peace and calm right before the storm.   

I guess the support group was more healing than I thought. 


his throat is hurting again, although thankfully not quite as bad as last time.  The options for intravenous nutrition did not sound pleasant, so he needs to keep eating! 

Saturdays in the hospital are quiet. 

He's got a low fever again (100.0).  :( 


“Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us...
—Dallin H. Oaks


Jen said...

Have you talked to Candice about how they found out about Josh? it took her a few months and a lot of being persistent (on her end) and pushing the doctors. In the end it was internet research that she did and made the doctor check it. I'm glad that the group helped you a little. Hang in there. (Do you need some chocolate from France sent to you?! Just let me know!)

Cynthia L said...

Thank you so much for taking time to keep us updated. I find myself looking several times a day to see any updates. I feel so uplifted by your posts and am always glad to hear when it has been a good day, well as good of a day as you can expect. What a trooper Spencer is as well as all of his family. Your family is in our prayers.

Steve-Rosanna said...

Being here this past couple of days in the midst what I had imagined to be so much potential turmoil has left me amazed at the absolute serenity and peace that actually exists among the family.

Everyone is so loving,cooperative, and working together to get things done. So many families literally seem to fall apart under the continual worry and stress. Thank heavens for the blessings of the gospel in our lives. Our knowledge of the plan of salvation and the atonement of Jesus Christ gives rise to such calming and healing influences in our lives.

We love you guys and appreciate the example you are to each of us.

K said...

I put your names on another Temple prayer roll tonight. Love you!

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