Week 5 Update

We are currently in the ER at BCCH about to head home.  We’ve had a long, tiring 10 days!  We had hoped Nico would bounce back from his IRIN chemo last week but he seemed to have some delayed side effects.  On Monday, Nico had a planning CT scan at the BC Cancer Agency in Vancouver.  It went well.  They fitted him for the things he would need when his time for radiation comes.  They are currently leaning toward electron radiation which would treat more on the skin surface but they haven’t completely ruled out proton radiation just yet.  This scan would help them make that final decision and we should know more next week.  He was sedated for this scan and they determined he would need to be sedated for his entire stint of radiation.  That means he will go under general anesthesia everyday, Monday through Friday, for the five and a half weeks of radiation treatment.  This won’t start until around week 12 so we still have some time.

After his scan we headed over to BCCH for Nico’s vincristine chemo treatment.  This treatment is administered pretty quickly- only taking about 3 minutes.  Nico seemed to be feeling better and asked to go have spring rolls at a Vietnamese restaurant in Vancouver that we really enjoy.  So we headed over there and enjoyed a yummy dinner.  However, Nico started needing to go to the bathroom rather frequently right before we left the clinic and by the next day he was going to the toilet every few hours.  That night he had also vomited and continued to be unable to take his liquid meds that might help with the nausea and diarrhea.  So on Wednesday we decided to go back to the hospital to at least have him get some fluids.

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Still upset about getting a tube shoved down your nose and throat.  Who wouldn’t be?

While we were there and consulted with the dietician and our nurse clinician it became painfully clear that he would benefit from an NG tube. He had dropped 9% in his weight and the dietician said they recommend the tube when kids have dropped 10% so he was getting close to that threshold.  An tube going from your nose to your stomach is not an easy thing for anyone, and it was especially difficult for our little guy.  He was very upset about it and remained upset for awhile after the nurse had put it in.  These are the moments of emotional turmoil as a parent that increase the physical exhaustion and fatigue.  Thankfully, he seemed to calm down on the ride home and by the time I used the tube that evening to administer some meds he seemed to acknowledge the fact that it made things easier.

 

 

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Mom, Micah and V.  V stayed home with my family tonight which made things so much easier on us!

My mom, sister and nephew flew in late Wednesday night and it really brightened my day on Thursday to have them here!  We had a little family baby shower as I got to look through and sort all the pink and girlie clothes they brought for baby girl.  It was also a very lovely day with clear skies and sunshine!  A nice little break.  This morning we awoke to falling snow.  It can be such a beautiful and serene picture but it’s almost March and I’m ready for spring to make an appearance!!

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Putting on a brave smile at the ER tonight while we sit and wait.

After Nico woke up from his nap today he had an increase in a fever that had started Wednesday before we left the clinic and so off to the hospital we went. The roads were rather slushy from the snow and traffic was a bit slower on the highway than usual but we got there just fine.  We were seen at the ER.  Did the whole febrile oncology protocol bit and they did an x-ray of his chest as well since he started having more of a cough the last day or so.  His levels were fine, x-ray looked fine as well and they told us we could go home which is always a relief.  We will be following up with the on-call oncologist tomorrow to make sure his blood cultures come back clear from infections.

So that was our week.  Who knows what this weekend will bring and how week 6 will go.  Like I’ve said before, and I’ll type it again as to remind my weary brain, there are volumes of things we don’t know in this journey.  We don’t know how much longer it will take for Nico to bounce back.  We don’t know when this baby will decide to make an entrance.  (I’m due in one week!)  We don’t know about some of the regular life stuff that is still going on in the midst of this roller coaster ride.  But after 10 long and draining days we must, again, focus on the things we do know.  The beauty of having my family here with us.  The faithfulness of our loving Savior.  The encouragement and steady friendship of those who have become very special to us.  And as I wrap this up I’m reminded of Matthew 6: 25-34.

Not to mention, today was our niece’s birthday!  Happy birthday Gabbi, we love you!

8 thoughts on “Week 5 Update

  1. I haven’t been on FB much. Reading your update, leaves me short on words as I contemplate what you have shared. I keep erasing words cause they seem so feeble. So just know your thought of often, prayed for that Gods continuing strength and courage will fortify you each one as you go through each moment of the day and night. So thankful for our Saviour and His great arms of love that hold us close. Hugs to you each one ❤️
    Is. 41:10

    Liked by 1 person

  2. Every day you are in our prayers, and Kyle and Paige have had Nico’s bracelet on since we received them as a reminder. We believe Prayer to be powerful, I once heard it described as,-Giving God permission in the sight of the Universe to work on someone’s behalf.
    If God be for us…..So we pray each day for peace, healing, and comfort for Nico, and his tribe. Words seem lame when we read what you must endure, but we are praying, and we care.

    Liked by 1 person

  3. We are praying hard for Nico, his medical team, and his treatment. Also praying for you and Nick. May the Lord give you strength and comfort.

    Like

    1. Thank you so much Jacqui! We are so thankful for your generous support of us and for the prayers and encouragement! Congrats on your newest addition, your boys are so precious. ❤

      Like

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