Author: treasuresgleaned

This is stepping back in time a few weeks, but it’s something else significant that we’ve lived, and  where we have witnessed God’s faithfulness to us.  After hearing such great news that my cancer had not metastasized, we were in for a very stressful day followed by more fantastic news.

It was Friday, Feb 2^nd.  My older sister Jill had come in town to surprise me the day before.  We had a full day of appointments scheduled.  One last dentist appointment before chemo starts.  Check!

Jill surprised me by organizing a lunch with three ladies who have all walked very difficult roads, and are precious testimonies of God’s faithfulness.  Marion and Anne have battled breast cancer, and know very intimately the road I’m beginning to walk.  Elizabeth has had an equally difficult road as not one, but both of her sons,  were born prematurely.   One was only 26 weeks gestational age. Very early.  She and her husband literally did not know whether he would live…and if so, what challenges he would face.  (Praise God: years later both of her sons have no health issues at all).  Lunch with these women was the biggest dose of encouragement, wisdom, and perspective I could have asked for.

We were at Gabe’s office, Raleigh Ophthalmology, getting my prescription updated and a new pair of glasses when I got a call from our pediatrician’s office.  I had arranged an appointment for my mom to have our 8 month old son looked at, since he had a rash I’d never seen before.  It was a petechial rash on his legs.  Suddenly, I’m in a conversation with the pediatrician that had my head spinning: low platelets, ITP, and blood smears.

Here’s what happened.  When the pediatrician saw the petechial rash, she knew it was a sign of low platelets counts, and ordered blood work in the office.  A normal range for platelets is anywhere from 150,000 – 450,000.  His was 19,000.  She then called Gabe and I to let us know that she was ordering more blood work and a blood smear from Rex Hospital.  We took Kai there for the blood work.

We were at the pediatricians office having a discussion with Kai’s doctor when the results came in: his platelet reading at Rex was the same as in the office.  Very low.  Unfortunately, with it being a Friday afternoon, they were have some trouble getting the results of the blood smear quickly.

“What will that show us?” I asked naively.  I’m sure both the pediatrician and Gabe did not want to tell me.

Leukemia.

Our pediatrician sent us to Duke’s pediatric ER 30 minutes away for more testing.  Depending on the findings, Kai may need to be admitted.  It was early evening, and more than anything I wanted to go.  But I was starting chemo Monday and was advised I should not be in the hospital during flu season.  My big sister Jill became one of my first crucial “gap fillers” for me in this season.  She accompanied Gabe and baby Kai to the hospital for me.

Drained, overwhelmed, concerned, and simply wanting to be with Kai and Gabe, I went to bed a few minutes after they left for the Duke’s ER.  And laying in the dark, God met me once again.  Nothing too supernatural.  He simply gave me peace where I should have had only tremendous  stress.  And I realized that I have a choice in every situation whether to trust Him or not: with my own health, with my children, with my husband.

I physically opened my hands before my good, good Father and prayed passionately for Kai’s healing.  I told God that I trusted him regardless of what road we would be asked to walk through with Kai.  Did the leukemia word scare me?  You better believe it.  I’m no superhero.  Much  more than “dreading” what the next year would bring for me, my heart broke and quaked when I thought of my baby doing similar treatments.  But I remembered God’s sweet instruction from Matthew 6:34:

“Do not be anxious about tomorrow…”

And I went to sleep.

I woke up at 2 am to Gabe, Kai, and Jill in our room!  Kai had not been admitted to the hospital.  The blood smear seemed normal, praise God!  There were a few things that were not “normal” about Kai: platelets being too “large”, his age (ITP normally presents in children 2-3 years of age or older, not infants).  We had an appointment to follow-up at Duke on Monday.

Since Monday was my first day of chemo, I had no opportunity to go to that appointment either.  My mom became another crucial “gap filler”, while Gabe pulled double-duty.  He took me to my chemo treatment, he and my mom took Kai for his follow-up blood work at Duke, and then came back and picked me up.  What a super star, right?  My younger sister Autumn and I had a good time together on my “first day of getting better.”

The bottom line on Kai is that the doctors are calling it ITP caused by a virus (a diagnosis of exclusions).  They see nothing that indicates leukemia, praise God.  At day 3, his platelets were up to 27,000.  At 9 days out, they were within normal range at 188,000.  We follow-up in a month to ensure all continues to look good, but we are more grateful than you can imagine.

 

As much as I dreaded it, we had to tell the kids something eventually!  We were supposed to take a family trip to Hong Kong on Feb 3^rd to visit Gabe’s dear Uncles and Aunties and to celebrate Chinese New Year with them (a holiday neither Gabe nor I have had the privilege to celebrate in Hong Kong yet).  Gabe’s mom and both of my parents were also coming.  We’d invited our precious 13 year old niece Ashley to travel with us, baby Kai was coming since he would still be nursing, and it was the first “big trip” we would take our oldest daughter Abby on.  Of course, we were excited.   But Abby was not only excited: she was counting down.  We’d made a calendar with every day in January, and each morning, she would faithfully check off the day.  She talked of little else, and felt so grown up that she got to go with Mommy and Daddy on a big trip since she was now 5.  I was heart-broken to tell her we could not go.

My friend Anne had amazing suggestions for talking to the kids.  Keep it simple, keep it positive.  One step at a time.  And with the young ages of our kids, only Abby and perhaps Will may grasp any of what is going to occur over the next year.

We planned a trip to Marbles (a kids museum) with friends of ours from church.  Over breakfast, I took a deep breath and told the kids we would not be going to Hong Kong because “the doctors found a sickness in Mommy’s body.  They have very good medicine to treat the sickness, but I have to have the medicine here in Raleigh, and not in Hong Kong, so we can’t go right now.”  And then we went to Marbles to play.

I put my phone in Gabe’s pocket as we walked in, simply so I wouldn’t lay it down.  And not intentionally, but by God’s grace, I was fully present with my kids for the few hours we were there.  Granted, normally I’ve got an infant and a toddler also in tow!  This time, Gabe and I were two-on-two with Abby and Will only.  But I realized as Abby or Will asked me to play, I had a choice to be fully present with them or not.  Many times, I’m on my phone returning a quick text, taking a picture of them, jotting a note in my calendar.

They simply wanted my attention, my focus, my praise.  On one occasion, Abby said, “Oh, Mommy, come watch me climb this ladder over here.  You’ve never seen me do that before.”  As I followed her, I was saddened.  Many times that we’ve gone to Marbles, she’s climbed that same ladder and jumped to the gymnastics pad below.  Most of the time, I’m a few feet away.  But have I ever really seen her?  Have I really watched her?  Or was I simply on my phone or managing the chaos?

You think it would be easy in the face of this news to be fully present with your little ones.  But it honestly has not been.  I’ve had a lot on my mind, a lot to process, many emotions to wrestle with.  What a precious gift God gave me that day at Marbles.  The gift of being fully present with two of my sweet little kids, and understanding how simple it is to make that choice to devote time to them.  To invest in them.  It may not come naturally, but it is so important.  And I’ve never, ever had more fun at Marbles…because this time, I was present.

In this brief 4 week journey, Mondays have been our momentous (and often emotional) days.

Monday, Jan 15^th

I went in for what I thought would be a very routine ultrasound / mammogram.  I expected to hear that I had a “milk-filled cyst” from nursing our 8 month old, and instead was told I likely had a golf-ball size cancerous tumor in my breast.  On top of that, the radiologist saw several  lymph nodes that were suspicious for cancer.  Friday, the biopsy results were confirmed: a fast-growing “her2neu” positive tumor in my breast, and cancer in at least one lymph node.  Rex Hospital set us up for two appointments: with the surgeon and the oncologist of our choice for a few days later.

 

Monday, Jan 22^nd

We had two doctors’ appointments back-to-back on Monday afternoon.  After a weekend of not knowing at all what we would hear, it was encouraging to have conversations centered around treatment.  Both physicians were truthful that this is a serious cancer, and that it needs to be treated aggressively, but gave us such hope that there are excellent treatments and strategies that we can employ against this Invader.

 

Monday, Jan 29^th

The most difficult part of this short journey that we’ve been on is the unknown.  Those few days between biopsy and receiving results stretched on and on.  Once we met with the physicians on Monday, the 22^nd, I was told I would have numerous scans to see if the cancer had spread (since it was positive in my lymph nodes, it could have traveled beyond and metastasized already to other places in my body).  And the most common places breast cancer metastasizes to all scared me: brain, lungs, bones, and liver.

I went in on Monday evening, the 29^th, for the brain MRI and the PET scan.  Gabe was there for both, precious husband.  It’s difficult to describe again the range of emotion we felt.  The tenderness we experienced as we watched each other, me in hospital gowns with IVs, and all that special gear (the helmet for the MRI, etc).  Him faithfully stationed right outside the MRI or PET scan tube where I lay motionless, head bowed praying the whole time.  Of course, we felt fear: what if the cancer was everywhere already? But in the next moment, we would put our focus back on our Father who loves us, whose character we can trust without hesitation, and felt indescribable peace.  We know He will carry us regardless of where this journey takes our family.

The rest of the week was a flurry of news, information, preparation, and a port procedure.  The scans showed no metastases in other places of my body: we were elated.  The only news that was disappointing was that it had spread fairly extensively to my lymph nodes.  The oncologist showed us the PET scan: when we got to the underarm area, it was like numerous little light bulbs all glowing on the scan.  I was staged as having “Stage 3B” breast cancer, and we set our sights on Monday as the start of chemo.

 

Monday, Feb 5^th

First chemo infusion.  It honestly felt surreal.

I feel 100% healthy, and have had no noticeable symptoms from the cancer.  My pill regimen to date has been a prenatal vitamin the last 5 years, with an occasional ibuprofen if I’m sore from exercising.  Suddenly, I have so many medications that I’ve organized them in box which I keep high up in our closet, so our kids have no opportunity to access them.  I spent Monday evening organizing the medications / dosing schedule, etc in an excellent app Gabe found for me called RoundHealth, because I could not keep them straight in my head.  Strange.

Gabe and I arrived for the infusion at 8:30am.  I received 4 different drugs through my port, and it was completely uneventful (praise God!).  One is called Taxotere, and folks can have pretty serious reactions to it.  I had none.  My friend Anne who had breast cancer a few years ago told me this is the “first day of getting better.”  That was  really helpful for me to frame the day.

I came home, and our highly talented friend and neighbor Tracey Spampinato, took a few pictures of Gabe and I.  She’s recorded lots of chapters of our lives: pregnancies, babies, playing in the snow.  It means so much to us.  The rest of the day was sweet, and normal, and joyful.  Playing games with the kids, eating dinner together, doing the bedtime routine.  Oh, and then organizing medications on my RoundHealth app.  This will be an strange season of many contrasts, I’m sure.

I have 3 weeks “off” until my next round of chemo is scheduled for Monday, Feb 26^th.  The first half of the cycle is supposed to be more heavy on the side effects, while the last week before chemo, I’ve been told I should feel pretty good.  We’ll wait and see.  One day at a time.

Discovery.  It sounds exciting, right?  Anyone who knows me knows that I love surprises.

Rex Hospital here in Raleigh has a catchy slogan regarding us cancer patients: “From Discovery to Recovery.”  The recovery part I’m certainly looking forward to.  Even the treatment (as that’s the most probable avenue God will use for recovery).  But the discovery phase?  It has given me a run for my money.

Today marks the end of the discovery phase.  And we received news we were longing to hear.  The PET scan showed fairly extensive “regional lymph node involvement” (not the news we wanted), but was otherwise clean.  The brain MRI was also clean.  The breast MRI had no surprises either.  Thank you, God. It is strange what qualifies as “great news” all of a sudden.

After 14 days of not knowing, I am delighted to have Stage 3 breast cancer.  Yes, it’s serious.  We know that.  But I’ll take it!

The  battle plan was also finalized yesterday.  Since I’ll begin with chemotherapy, my oncologist is leading the charge.  And let me tell you, Gabe and I feel like we have General Dwight D. Eisenhower on our side.   Dr. Graham is not only a brilliant strategist against the Invader, he is exceptionally kind and empathetic.  On several occasions, he has spent two or three hours with us, drawing diagrams, and explaining everything we need to know.  We have full confidence that fighting cancer is his passion and vocation.  We are thankful he is on our team.

Chemo begins Monday.  I’ll have 6 infusions of the TCHP protocol exactly 3 weeks apart.  I finish mid-May.

I continue on two of the four drugs for another 11 infusions, every three weeks, for a total of about 1 year.

In mid-June, I will have a double mastectomy.

In August and September, I will do radiation each day for 6 or 7 weeks.

We cannot adequately express how much your support has meant to us these past few weeks.  Our family, friends and even folks we only know through a friends and family have prayed (please continue), called, texted, emailed, brought meals, made lunches for our kids, initiated play dates, given us valuable advice for the journey ahead.  Thank you, thank you, thank you.

It’s difficult to describe all the human emotion felt in the past two weeks.  We have been on a roller coaster.

Ordinary moments with the kids have taken on a depth of joy and delight that is sweet.  A friend who walked this road two years ago said, “the world is in technicolor all of a sudden.” Such a good description.

There have been many moments of sadness.  Most have to do with crossing bridges we don’t need to cross.  And I push them away with God’s help, and remain in the present.

Matthew 6:33-34:

“But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself.   Each day has enough trouble of its own.”

But some are things that need to be mourned.  Nursing Kai, for example.  From the Monday afternoon of the abnormal ultrasound / mammogram until last Friday when I heard the results confirmed, every time I nursed Kai was bittersweet.  I’ve loved nursing our babies.  It’s a really special bond; a time to cuddle my beautiful baby close, study the sweet little baby features, and pray for his or her future.

As soon as I heard the biopsy results, I asked both the radiologist and oncologist about nursing.  They both agreed future scans (Breast MRI, PET scan, etc) would be much more clear if I was not breast-feeding.  Ready to do anything I can in this fight, I decided to stop immediately.  It was Friday at 4pm, so Gabe and I drove straight to my OB’s office to ask for advice on weaning.

We were wrapping up a discussion in her office about weaning, my diagnosis, etc, when a terrifying question came to mind.  Could I be pregnant?

It had come to mind many times in the few days between the mammogram and the results.  At the risk of being too personal, I have not gotten my cycle back since Kai was born almost 9 months ago.  With our other children, it returned when the babies were 6 months old and we introduced purees into their diet.  So though logic told me that I was not, it was a question that had haunted me that week.  Since it fell in the “don’t cross bridges you don’t need to cross” and “take one day at a time” category, I had not allowed myself to dwell on that question until hearing the biopsy results.

I voiced my concern to my OB, who said she could do a pregnancy test for me in the office.  I wrestled for a moment.  I honestly did not know if I could handle the news if I was.  We had been told my cancer is “rapid growth” (Her2/neu positive).  The mass is already large.  7 cm by 5 cm.  It is in at least one lymph node.

Though this may be incorrect, I felt like if I was pregnant, it could likely mean the choice between my life and our baby’s.  EVERYTHING in me longs to stay with Gabe, Abby, Will, Nate, and Kai. To be here for every milestone, every boo-boo, every little talk that lets me hear inside their precious little hearts. There is absolutely nothing I want more.  But what if I was expecting a 5^th little child?  Another precious little son or daughter of mine & Gabe’s.  A new little brother or sister for Abby, Will, Nate & Kai.  Though it felt overwhelmingly impossible,  I knew that I would choose to give him or her life.

As we waited for the results, I agonized.  I begged Gabe to pray for me.  It was the longest 15 minutes of my life.  The technician must have been prepped by the doctor.  As she rounded the corner, she was already saying the words I longed to hear, “Mrs. Chong, it’s negative.   You’re not pregnant.”    I wept.

God is so gracious to us.  He has given me the freedom to fight.  That is truly the biggest gift I could be given on this journey.  We are so thankful.

And look at this picture:  Abby’s first time feeding Kai a bottle.  If you’ve got to stop nursing your baby boy, that’s a pretty good consolation prize!

There are some moments you simply can’t prepare for.  Last Monday was one of those.

The back-story first. When feeding baby Kai around Christmas, I felt a large lump in one of my breasts.  As a nursing mom, I’ve felt lumps many times before. I assumed it was a plugged milk duct.  A week or two later, I noticed it had not resolved and showed my husband, who is a doctor.  He was extremely concerned…until he began googling.  We read about something that is rare, but can present in nursing moms: a “milk-filled cyst”.  We both breathed a sigh of relief.  That had to be what this was.

Ever the excellent, thorough physician, he encouraged me to see my OB. (Thank you, Gabe!).  I went the next day.  The first thing my OB mentioned as an explanation was the milk-filled cyst, but said she would refer me onto a radiologist for an ultrasound (thank you, Atrium OBGYN!).

I arrived at Rex’s Breast Care Center calm, and even looking forward to a quiet hour, as Gabe was home with our 4 little ones.  It’s funny what we mamas consider a “getaway”.

After the ultrasound, the technician said the radiologist would like a mammogram done.  I had one a few minutes later.

Then, the shocker.  The radiologist came in to drop the bombshell: “well, it looks really suspicious.”  Discussion of a biopsy the next morning, results on Friday, my head was spinning.

Here’s the awesome part:  I did not have far to fall.  In that cold, dark mammogram room, I leaned back only a little and felt God begin to carry me.  To carry Gabe and our family through this journey.  Of course, it is not the news we wanted to hear, but God is completely good.  He is carrying us as a Father carries the little children He loves.

Speaking of shock and awe, we recognize my life is in God’s hands (as all of ours are).  We are praying desperately, boldly, persistently and trustingly for complete healing.  Please join us.  And you’d better believe I’ll do anything at all my doctors recommend.  As one doctor put it when speaking of chemo and surgery, “let’s give this the one-two punch.”  Let’s do that.  And then follow it up with radiation too.  Bring it on. Gabe and I have 4 beautiful babies to raise.