Surgery update and Fear.

Watts' surgery went well, friends. Watts was calm and peaceful the entire pre-op time and never asked for anything to drink or eat. We were unable to get blood-return from his port, but even through that, Watts smiled and charmed us all. Our last glimpse of him, he was being walked down the hall by the anesthesiologist with his surgeon following behind, running his fingers through Watts' hair.

The port gave the surgeon "a run for his money" and required an extra incision to remove it, but the port was removed and Watts did beautifully.

Watts is now back to his normal speed and apart from some discomfort from his port-site, is completely back to normal. We are so very, very grateful.

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 I began writing the post above about a week ago but haven't been able to post it because I've kept writing and erasing, writing and erasing. 

This pediatric cancer world is a hard one. There is beauty in the faces of the little warriors and such joy in milestones reached, but there is also such darkness and brokenness and pain. On the same day as Watts' milestone surgery, another little girl at Brenner relapsed. Her diagnosis is the exact same as Watts' and she is only four months ahead of him in post-treatment. We are aching for their family. And hoping! And praying! But, first and foremost, aching...because this is not at as it should be.

Fear has been at my heels this week and I've been wrestling again through what it means to trust Him, what it means to live without fear in a painful, broken world, and how to let go of the grip I want to pretend that I have on my kids.

It all seems a bit beyond me and I feel like a small child, terrified of the dark, watching the sun set out the window.

I've written a page-full (that I'm now erasing) about the Lord and the Gospel and the darkness but I would simply be preaching it to myself and, if I posted it, I'm afraid it would seem as if I have this all figured out, which is not true. There is so much wrestling still. Daily, hourly.

The hymn below is one that we sing over Watts each night. It's lyrics are powerful and a beautiful reminder to our fearful hearts... And a reminder that perhaps it is when we feel the most like little children, desperate for our Papa as the night falls, that He has the most room to work and be glorified in our lives. Abide with me, Lord.

Abide with me; fast falls the eventide;
The darkness deepens; Lord, with me abide;
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me.

I need Thy presence every passing hour;
What but Thy grace can foil the tempter’s pow’r?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness;
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies;
Heav’n’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

Port-removal Surgery

Tomorrow morning Watts' is scheduled to have his surgery to remove his port (some cancer moms call this the "de-port-ation"). This surgery should be uncomplicated and brief, and we'll be home in time for Watts' nap, Lord-willing.

This surgery is monumental for Watts and is being done in hopes that all transfusions and treatment is behind him for good. At least that is how Michael and I are viewing it! His surgeon said something to the effect that Watts isn't using his port enough to warrant the risk that having it in brings to his little body (bacteria being introduced each time it is accessed, blood stream infections, etc.). So there's that side of it too.

After the surgery, a few things will change in Watts' post-treatment care. Watts will have his finger pricked at Brenner for his labs instead of accessing his port each time. His surgery will also change how we will respond to fevers at home. In the past, whenever Watts had a fever of 100.5 F or higher, we had to take him to Brenner to start antibiotics and have his labs checked and blood cultures drawn. These ER trips would typically turn into long stays because his counts were so diminished (and his team would want to keep him until his counts started to recover) or because a few times he had growth in his lab cultures that meant there was some sort of blood stream infection going on. Now that Watts will be without a Hickman line or a port, his risk of these infections drops dramatically, and we can start monitoring fevers at home.
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Overall, we are thankful to be at this point and plan to celebrate this milestone once Watts feels up for it after his surgery! Please do still keep us in your prayers tomorrow. For Watts and his little heart to not be frightened as he heads into surgery, for Dr Pranikoff's hands to be steady and for there to be no complications whatsoever, and for Michael and I to rest our nervous, weary souls in Him. He is faithful and He is good.

Good appt!

 I posted this to instagram (you can follow me there for more frequent pics) but wanted to post it here too. Watts had two appointments yesterday and both went great! His labs showed NO sign of relapse, his lymphocytes are recovering, his team agreed that he could stop his prophylactic antibiotic (after 2+ years of continual use and endless intestinal issues), and his port removal surgery has been scheduled for next week. What a day! We are so thankful and so relieved. Every appointment feels a bit like walking to the edge of a cliff and wondering if we are going to be jumping off again. What sweet relief when the doctors tell us that all is well!

Today we rejoice in Watts' good news, all while aching for those who didn't or won't be receiving good news about their boys and their girls. Lord, be with them.

Kitchen Reno

At the end of May, Watts finished his two year chemo treatment protocol. In the beginning of June, before we even had time to catch our breath from the last two years, we gutted our kitchen, thanks to a bad leak under our dishwasher that had caused significant water damage. Apparently the leak had been there for some time but it had been missed during the inspection at the time we purchased our home. We only noticed it when the kitchen floor started to get soft and squishy in a certain area.

And so for the last three months, we have been camping in our home and working during any free time to replace everything in the kitchen: new drywall, new floor plan, new lighting, new-to-us cabinets, new electrical, new plumbing, etc. Some of it we were planning on doing, other things were discoveries that we found as we ripped out 75 year old walls (i.e. a drainage pipe in the ceiling with a fist-size hole in it). Michael has done about 80% of it himself with the help and support of friends and family...and youtube video tutorials. 

This past weekend, we were able to get back into the kitchen and set up our table and move the fridge back in. We are still without a sink, counters, range, or dishwasher, but we're hoping that will be done in the next two weeks. We are so very thrilled and thankful to have the bulk of the reno behind us.

The timing of the renovation was less than ideal, as it came on the heels of a very exhausting season of life, but it has been yet another opportunity for us to see the Lord provide for us and sustain us. [And He provided for us so abundantly.] It also has felt redemptive in a way, to be tearing something down and then to rebuild it and make it beautiful again.

So that brings us to today.

Yesterday, the kids and I started preschool/pre-k at home. There are many reasons why we decided to not start Piper in kindergarten this year. Michael and I are hoping and praying that this year is a year of restoring some normalcy and healthy rhythm to our home and one full of play. We've had two years of much disruptions and chaos at times, even during the months of maintenance (thanks to those awful steroids). There will be time enough for school schedules and busyness, but not this year. This year is going to be a redemptive year for us, Lord-willing. And in a new kitchen no less!

Watts' update.

Watts is a wild, cancer-free, three old one. Praise the Lord. He keeps us on our toes every second, and loves nothing more than to wrestle with Michael and charge at him at full-speed. We are currently working on Watts coming when called, not being too rough with Piper, and potty training (he's had a total regression over the summer). So, basically he's like an adorable, unruly, highly-verbal puppy dog. And we all are crazy about him.

His monthly appts. have gone well. He has shown no sign of relapse (other than the one test that was in error) and he appears healthy and "normal". His labs have not recovered as quickly as I would have hoped but they have held steady enough that his team wants him to have surgery to remove his port on October 2nd. This will be yet another milestone on this cancer journey. His height and weight have not changed, but we expect that soon he will start to grow and catch up to normal rate of growth.

About a month ago, Watts started to get his appetite back. After TWO YEARS of not wanting to eat and of us feeding him almost every single bite of food (literally), he has started actually saying that he is hungry and has begun to self-feed again. Not coincidentally, around the same time his appetite returned, his face broke out in a rash. This is actual a good thing and a visible sign that the 6-MP, one of his maintenance chemos, is getting flushed out of his body. Hence the return of his appetite. Praise hands emoji!

Thank you for your continued reading of the blog and for your prayers...even when updates are few and far between!

A little scare.

On Thursday of this past week, Piper and I took Watts to his first post-treatment follow-up appointment. These appointments are monthly and include labs, vitals, a visit with his doctor, and a port-flush (until he has port-removal surgery which will happen in a couple months).

It was a long wait for the appointment, thanks to the busyness of the clinic, but the time with the doctor went smoothly. Side note: Our cute little guy is only 7% in height and 23% for weight. These numbers will probably start changing a lot in the months to come off-treatment.

I left before we got the lab results back because I wasn't worried. He had only been off treatment a couple of weeks and he looked great, I remembering thinking to myself.

The doctor called about an hour after we got home and had concern in his voice. Watts' platelets had dropped to a 44. He told me that there were two possibilities in his mind: Watts had relapsed or the test was in error. Having the platelets drop is frequently a first sign of relapse, he said. He wanted us in at 7:45am the next morning to recheck Watts' labs but he had scheduled a bone marrow biopsy for him in the event that the labs came back the same. The bone marrow biopsy would check for relapse. We were to bring him in NPO (no food or drink) and we were to stay until we got the new lab results.

In all honesty, time seemed to stand still for the next few hours. We wanted to be so hopeful, so confidant that it was just a faulty test result, but I couldn't help but remember how confidant everyone was in the early days that Watts didn't even have cancer. And he did. And a doctor having concern in his voice is unnerving to cancer parents' hearts.

I laid on the floor of Watts' room that night and prayed the 23rd Psalm over Watts as I do many nights: The Lord is Watts' shepherd; he shall not want. He makes him lie down in green pastures. He leads him beside still waters. He restores Watts' soul... Even though he may walk through the valley of the shadow of death, Watts will fear no evil, for you are with him...  Surely goodness and mercy shall follow Watts all the days of his life, and he shall dwell in the house of the Lord forever.

We arrived early to our appointment and were hugged by teary-eyed nurses. One of our sweet nurses whispered that she had been up all night praying for Watts. The doctor himself came early to be in the room when Watts' labs were redrawn and sent to the lab.

And then we waited. We walked around for a bit, but then ended up back in our little room, nervously making small talk and just waiting. Everything felt like it hinged on the door opening and those first few words from the doctor.

Dr McLean opened the door after a few more moments and had a glorious smile on his face. Platelets were normal. The tube of blood must have had a teeny tiny clot in it– one that our nurse and the lab technician couldn't see– which had absorbed all of Watts' platelets and gave us a false read. Watts had not relapsed.

There were hugs all around in the clinic and some more teary eyes.

Watts has not relapsed. We were shaken, but we were not destroyed. Even if he had relapsed, we would not be destroyed, I believe, His faithfulness and goodness would carry us as it always has, but what a joy it is to write that all is well. Thank you for your continued prayers for our boy and for our hearts as we walk this road and fight to choose hope every day.

[Unrelated to the faulty lab results, we stayed for a few hours for an IVIG transfusion to boost Watts' antibodies. We thought he might have been ready to not need these transfusions anymore, but it looks like it might be a couple months before his immune system starts showing signs of recovering. All of this is very normal and to be expected. We stayed for a few hours, the boys napped, and then we went home! No more labs for a month. Wohoo!]

Where we go from here...

 I'm currently sitting in Watts' darkened room trying to convince him with my presence that a nap would be a good idea.

"No nap, Mama. Watch a show?" No buddy, I reply, I'm the mommy and I'm saying it is time to sleep. "No, I'm the mommy! I say watch a shooooowww!"

And so it goes. And I can't help smiling even while I type this because even this is cause for celebration. These nap protests? Such typical two year old behavior. Typical! I am so thankful to type that word in reference to my son.

. . . . . . .

I just took a break from writing and rocked him to sleep. He thinks that he's playing me by requesting to rock again about five minutes after getting into bed but the joke is on him because I don't mind in the least.

When we rock, he tucks his curly haired head up underneath my chin and life seems to slow down to a rhythmic back and forth, back and forth. I've found that I can reset my day by that rocking. I can slow my racing mind and heart to the steady back and forth, and pray in the darkness for the stillness and mindfulness to just be with my son in this very moment.

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Watts is a week and a half off of treatment and every day it seems as if he is coming more alive. Perhaps it is only our imagination, but each day off of treatment he seems to gain more energy, eat a little bit more, and become quite the little rascal (poor Piper, is usually the recipient of his aggression teasing). He does still complain about his back (we believe that the pain is from his numerous lumbar punctures and scar tissue built up around the access point) and his appetite is still sub-par, but we are thankful for where he is.

We've had a lot of questions about what comes next now that the chemo treatment is done, so here goes:

We are now heading into Watts' follow-up/monitoring care. Because of his high-risk diagnosis of Infantile ALL, this will entail monthly labs and clinic appointments for the first year post-treatment,  every two month checks for the second year, every three months for year three, every four months for year four, and every five months for year five. The first two years post-treatment are when he will be at a greater risk of relapse. This gradually decreases the further he gets from EOT, and after five years post-treatment (when he is almost eight years old) he'll be considered 'cured'. What a day that will be! As well as monitoring for leukemia relapse, his team will be monitoring him for organ damage and secondary cancers that could be side-effects from the chemo he has had in his little body over the last two years. His first post-treatment echocardiogram should be in July or August.
 
His immune system will take some time to recover. For over the last year, the chemo has kept his ANC (ability to fight off infections) hovering around 500-1500 (a normal ANC for a child is 3,000-5,000, I believe). His ANC should start recovering soon and we are hopeful that his IGG level will start improving in the next couple months. When that happens, Watts will most likely not need any more IVIG transfusions and we can schedule his port-removal surgery. We will still be cautious about germ-exposure with him to some extent (no clue what this looks like yet) until he is re-vaccinated in a year. As of right now, his immune system has been "wiped clean" and he is not able to receive vaccinations until he has some time off of treatment.

Our wonderful, crazy-optimistic doctor has told us time and time again, that Watts has received the best treatment and medication available today to treat his disease. While we could view the next few years as a waiting game (which we are choosing NOT to do), we should find great comfort in knowing that Watts has received the best care available to him. And we do find comfort in that!

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All of the above may feel a bit heavy to read. When I share it with people, I have found that their faces tend to fall and they usually comment on how they can't believe it isn't all over yet. 

Sometimes I feel the same way. The weight of the what-ifs can feel suffocating if I linger there for too long, the questions without answers can be maddening. 

Despite it all, we are not without hope! I have my moments -and days- of anxiety, but when I am able to acknowledge the dark waves in my heart and the heaviness of my fears and exhaustion and cry them out to my Father, I find that the waves begin to still and the clouds begin to lift. He meets me there in the honest cry of my troubled heart. I then find that I am able to move from the fear of tomorrow to being able to stay in this gift that is right before me: the beauty of today.

As I stay in this gift of today and remember His faithfulness to me in the past, hope floods back in. It is a complex hope now. It is not merely a hope that Watts will not relapse, it is broader hope that this broken world will ultimately be made new; that all this pain and cancer and death and tears will once and for all be wiped away by the One who not only loves us, but who endured death to win us back to Himself. And it is a hope and a "full-leaning-my-weight-upon" faith in my Abba Father who has not for one second stepped away from me... even on the darkest nights of my soul.

I'll close this ridiculously long post with these lyrics by Sandra McCracken from her new CD based on the Psalms (it is amazing, go buy it):

We will feast in the house of Zion
We will sing with our hearts restored
He has done great things, we will say together
We will feast and weep no more

We will not be burned by the fire
He is the LORD our God
We are not consumed, by the flood
Upheld, protected, gathered up

In the dark of night, before the dawn
My soul, be not afraid
For the promised morning, oh how long?
Oh God of Jacob, be my strength

Every vow we’ve broken and betrayed
You are the Faithful one
And from the garden to the grave
Bind us together, bring shalom.  

No more chemo!

After two years of treatment, our little warrior boy is all done with chemo! Last Friday night, a crowd of family and friends gathered around us to watch and cheer as he took his last chemo syringe. It was a blessed, blessed evening. Thank you to everyone who celebrated with us! I've been at a loss for words the last few days, but will post more about the special evening soon.

Live Music

Michael is going to be doing a live performance of all the songs on "Songs in the Night", along with some other music, on Saturday June 6th. If you are in the Greensboro area, we would love to see you. The concert is at 7pm at Hope Chapel (1825 Spring Garden St) and it's free. There will be a great band, including string quartet. Hope to see you there!

Saturday, June 6 at 7:00pm
Hope Chapel
1825 Spring Garden St
Greensboro, NC 27403

Video of Watts Ringing the Bell

We passed another treatment milestone yesterday as Watts got his final chemo infusion at Brenner.  It was a happy, happy morning and Watts got to ring the bell surrounded by his beloved nurses and doctors. We are so proud of our little superman. He now has only ten days left of chemo at home (steroids, MTX, and 6-mp).

Our dear friend Alisa came with us (I got to be with her when she rang her own chemo bell!) and took pictures and surprised us with this video:

The long awaited bell-ringing.

Tomorrow we go to Brenner for Watts' last dose of Vincristine. After his appointment, Watts will get to ring the bell in the clinic to commemorate his last chemo infusion at Brenner!

We are playing it up big for Watts and are all going to wear his favorite Superman shirts. After tomorrow, he will head into his last week of steroids and then a week of another oral drug that he takes at home. On May 29th, he will be done with treatment! Twelve more days to go.

Last Month of Treatment (in pictures)

These may not necessarily be in order, but I wanted to post some pictures for those of you who don't follow me on Instagram. Watts has been a trooper the last month and is currently only 17 days away from ending treatment (!!!). He has no clue what that means, but we are starting to talk about it more and are counting down the days for him.

Waiting to see Watty's doctors a couple weeks ago.

He's "spraying all the monsters" with the tube accessing his port. 

Waiting for Watts to wake up from his last lumbar puncture. 

Having a rough time waking up from sedation.

Steroid days call for staying in pjs...

And pasta for breakfast...

And lots of snuggles.

Papa-loving (and done with second to last round of steroids).

He always sleeps with a car...Lightening McQueen preferably.

His hair is so long that we have to put it in a man-bun to keep it out of his eyes. 

 IVIG transfusion. [He's napping, not sedated.]

Counting down and celebrating each milestone and chemo dose.

A rare family picture!