Photo by Rebecca Gould Photography

Tuesday, June 17, 2014

Easier (than Expected): Susan's 60 mg Updose

We arrived at Tuesday morning, June 17, 2014 -- the day of Susan's updose from 45 mg to 60 mg of peanut protein -- in a less-than-ideal spot in life. 

I was exhausted.  I had attempted to make the 10-hour drive from Bemidji, Minnesota to our home Monday afternoon and evening after taking Susan's twin siblings to their two-week Spanish immersion camp there.  I knew the drive would feel long -- especially toward the end, but, it was important to me that I get home no later than very early Tuesday morning so that I could sleep for a few hours and take Susan to her updose appointment.

Terrible storms in Northern Wisconsin slowed my return trip dramatically and eventually -- with a tornado watch in effect -- forced me to stop for a few hours "overnight." 

I counted myself lucky to get the last available hotel room in the small town where I stopped.  Had I stayed for more than a few hours, I might have actually enjoyed the whirlpool tub included in the rather exorbitant price of my room...

Once I was safely in my hotel room, I studied the radar and the forecast and after assessing how far I still was from home, I knew I would have to get up exceptionally early in order to get Susan to her appointment at the Clinical Research Unit (CRU) on time.  I was tired just thinking about it.

Looking for some wiggle-room, I e-mailed the clinical trial coordinator to explain my situation and asked if we could move Susan's appointment back by an hour, hoping to build some cushion into our morning.  While I have found the clinical trial coordinator to be very flexible and accommodating, I knew my request was not just about her -- her ability to honor my request would be dependent on available space in the Clinical Research Unit (CRU)... 

I slept fitfully (for my three and one-half allotted hours) as the storm raged around me.  At one point, I awoke and was surprised by the on-going intensity of the storm.  In the morning, I awoke to howling winds and heavy rain.  I was on the road by 4:00 am, and even though I was making better time than I had been making the previous night, it was clear to me that I was losing time. 

My husband and I talked.  We decided that he would take Susan to her 6:50 am skating lesson and that I would drive directly to the rink (so much for clean clothes and a shower!).  We decided that Susan and I would go directly from the rink to the CRU.  My husband was tasked with gathering all the things we take with us to the CRU -- iPad, books, change of clothing, bullet blender with chocolate whey protein powder, etc. 

I crept along through the horrible weather, all the while wondering whether I was driving into the storm or away from the storm.  I hoped that I would eventually out-drive it...and eventually, just as I crossed into Illinois, I did.

And just as the storms let up, I received a call from the clinical trial coordinator.  She was very understanding and as flexible as could be.  She told me not to worry about when we arrived, assuring me that as long as we were there before 1:00 pm, there would be no problem.  I was relieved to let that worry go.

When I arrived at the rink to pick Susan up, she was waiting for me.  Her face was pinched, and she looked anxious.  When I asked her how she was, she replied that she was worried we would be late.  I quickly reassured her, explaining that I had spoken to the clinical trial coordinator, who had been very understanding.  I was not surprised when Susan's expression did not change, for I suspected she was worried about more than being late.  I was almost certain that she was worried about eating peanut.

In the parking lot, we bumped into one of Susan's friends (and her mother).  They knew where we were going, and wished Susan well.  Susan mumbled an unintelligible response.  I didn't need to hear what she said to feel like I had a pretty good idea about what she had said -- she was anxious about the updose...and I was pretty sure that she had said something to that effect.  Being anxious before an updose was new for Susan...and while I was pretty certain that that was what was going on, even with my social worker hat on, I was not sure what to do to support her.

Not wanting to be rude, I tried to explain to Susan's friend and her mother that we were concerned about the updose from 45 mg to 60 mg.  Susan's friend's mother took a very positive attitude and said something along the lines of "you never know -- maybe it will be better than you think."  I thanked her, saying I hoped so...but, I think it was pretty clear that I didn't actually *THINK* it would go that well. 

Like Susan, I had never felt this way about an updose.
And while I wanted to believe in the power of Oral Immunotherapy (OIT) even without Xolair (for if Susan has been receiving the placebo, that is essentially what we are doing), I was still concerned about the updose.

Because, deep down, I really did not believe the updose from 45 mg to 60 mg would go well.

I did not know what to expect, but I did not think Susan would be able to tolerate the updose.

I wanted to think positively, and to simply believe, but, I honestly did not.
And as much as I tried, I could not.

My apprehension about the updose was mostly based on the difficulty Susan had with the 45 mg dose the previous Thursday...and while I was hoping my concern and misgivings were wrong, I could not shake the feeling that the 60 mg dose would be too much for Susan.

And I know Susan was worried, too, because everything she said in the car on the way into the city -- and all that she did not say made it ever-so-clear that she was worried. 

Because I know the importance of positive self-talk, and of believing in one's ability to do something, I tried to balance hearing Susan's fears with helping her see all the reasons she SHOULD be able to tolerate the 60 mg dose of peanut protein.

But, deep down, I knew that if I was going to be totally honest, I harbored all of the same fears and concerns that Susan did...(I just couldn't see the value in sharing them with her...)

Walking in to the CRU, our reserves were down.
I was exhausted.
And Susan was anxious.

It was business as usual when we arrived at Lurie -- height, weight, vitals, breathing tests, etc. 

And then, before either of us was really ready (would either of us EVER have been ready for this dose?), it was time.  The clinical trial coordinator handed me the prescription vial of peanut protein.  I inspected it, noting that now that the concentration has increased, there was substantially less.

I poured it carefully into our bullet blender cup, prefilled with chocolate whey protein powder.  The clinical trial coordinator provided milk and I mixed it into Susan's current favorite way to take her peanut dose -- a rich, frothy chocolate milk drink.

At about 11:30 am, Susan drank the concoction without issue...and then we waited...and we watched, and we waited some more. 

Susan retreated into a series of short movies about mermaids.  While we are usually more interactive while at the CRU, I decided to let her withdraw into her movies if that was what she chose, thinking it could only be good if she lost herself in something enjoyable.

A few tiny hives developed...and Susan had some mild facial swelling. 

The hives resolved.

The facial swelling resolved.

The two-hour window of observation passed and Susan was cleared to leave...except she wasn't quite ready yet. 

We hung out for thirty more minutes, and then...when she was still feeling fine, she decided she was ready to leave...shrugging her shoulders, saying "who knows -- I feel fine now, but..."

(Yes, that's exactly how I felt.)

I honestly believe everyone in the room (the clinical trial coordinator, the doctor, me, Susan) all thought she might have more difficulty than she did with the 60 mg dose.

After all, she had not tolerated the 45 mg dose on Thursday, and she did not even take a dose on Friday (as per instructions from the clinical trial coordinator). 

And yet, she tolerated the 60 mg dose without issue.

I sent a cautiously optimistic text message to a group of family and friends who closely follow Susan's updoses.  With her history of delayed reactions, I did not want to celebrate too soon, but, it did seem that Susan HAD tolerated 24% of a peanut -- that's nearly 1/4 of a peanut.

And yet, I felt uncertain...
The delayed reactions overshadow everything.
The delayed reactions have power over me, holding onto me...making me uncertain and afraid...(to some degree), at all times...

Susan was silent in the car on the way home.
I tried to engage her in conversation, but it was hard.
I imagined she was carefully assessing her body for a sign, any symptom of reaction.
I imagined she was worrying about the smallest of things.

I found myself wondering how much of what I was experiencing in Susan stemmed from anxiety and other issues surrounding the clinical trial and how much of it had to do with her being 11-going-on-12.  Impossible to tease apart, I decided.

And then, I offered a Slurpee (actually, a Thorton's Freeze).
Ah.  The power of a Freeze.

With the Freeze came a smile.
At last.
And for a few minutes, at least, I was able to push my worry aside.

Maybe, just maybe...60 mg of peanut protein would be okay.

I optimistically scheduled a pedicure for late the following afternoon.
While there is a lot I cannot do to improve the appearance of her skater's feet, I was pretty sure she would enjoy the pampering associated with a pedicure.

1 comment:

  1. Thank you for sharing your experience. You are one brave parent and one brave kid, and better yet, a great team working together as Mom and daughter.