A little update on Warrior-Boy, Watts. And me.

We just got back from labs at Brenner. All is well, and Watts remains cancer-free (!!).

Watts cried for the first time today when they pricked his finger for labs. It caught me off-guard because Watts is usually the one assuring me that "it just tickles, Mama" and helping them squeeze his finger and talking about "Mr Red". The tears represent our progress, I think, and speak to the fact that labs are infrequent and Watts' memory of his hospital days are already faint ones. This is a very good thing. The nurse and I still both got choked up with him as he cried.

Overall, Watts' labs are where they should be. His lymphocytes are slowly recovering and should be on the low-end of normal within a month. At that point, we will restart the process of getting Watts re-immunized with his local pediatrician. The chemo wiped his whole immune system clean when it was fighting off the leukemia cells.

Other appointment details:

• Watts' weight is a little below 50% and his height is inching its way past 10%. His height and his weight have been suppressed over the last couple of years due to the chemo but he seems to be slowly catch back up. 
• He has been having some minor intestinal issues. We are going to be monitoring this at home this month and if the problem persists, he will have some GI testing done next month.  
• He started on allergy medication due to having a runny nose and cough for the past 5 months. His problem with allergies, his doctor said, is most likely a side-effect of the two years of having a compromised immune system. 
• Developmentally, Watts seems to be right on track with where he should be. He speaks in full sentences, knows his colors, some of his letters, and last week, he started writing his name from memory. Two years ago, Watts was meeting with a physical therapist, occupational therapist, speech therapist, and being followed by a child life specialist. Today, we are shocked and unbelievably thankful to say that he seems to be a fairly "typical" three year old.  
• [Side-effects from the chemo (ranging from minor learning disabilities to eye problems to heart problems to secondary cancers) are all things that we will be monitoring for most of his life.] 

Our life looks fairly typical these days. And what a gift that is! As Watts' immune system has been recovering over the last few months, we have slowly started being able to do more normal things. We switched him from the small Infant nursery (we had him in there for about a year because of there was less risk of germ-exposure with non-mobile babies) to the 2-4 year old Sunday School class at church. We have gone to the Chick-fil-a play place, to an indoor jumping park, to the movie theater, to the children's museum, and a list of other places that have been off-limits since Watts started treatment. Since we kept Piper out of school this year, it has been super sweet to see their brother-sister relationship blossom and for them to have extended, non-medicated times of playing together. Both Watts and Piper seem to be thriving and Michael and I are deeply grateful.

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The journey for myself has been a bit murkier over the last several months. It is difficult to write that (hence the lack of posts over the last six months) because it can feel horribly ungrateful and insensitive to other cancer families. But it is also my truth and I want to be honest as I write our story. The post-cancer treatment stage has been a confusing one for me. While Watts was in active treatment, we had a battle plan and I knew exactly what I had to do to try and get my son well. It was a hard and dark season, but it was also a very intentional time and I knew what I had to do each day. While the end-of-treatment was much anticipated and brought great joy and relief, it also felt a bit like I was shoved off a cancer-fighting battleship and told to swim the rest of the way to shore with my kids on my back. But I couldn't quite remember how to swim. Or where the shore was. [This is a terrible analogy but the first one that came to my mind.]

It is an awful lonesome thing to finish cancer treatment for your son and to simply have to wait to see if the treatment will work. 

It is an awful lonesome thing for your son's team to tell you that they've done everything they can do and that now you just have to go home and wait. 

It is an awful lonesome thing to walk (what feels like) between two worlds... To be not fully in the cancer world any longer, thank goodness, but to also struggle to know how to re-engage with the non-cancer world. [And to live in the knowledge that we might have to step back into the cancer world at any moment.] 

It is an awful lonesome thing to struggle to remember that God is with me in the daylight and "normal days" too. I have so desperately needed Him over the last couple of years and have relied on Him so immensely during our dark cancer season, but somewhere along the way, I forgot how to recognize Him when the sun is shining and life is busy and the darkness seem to be primarily going on in my heart. [I'm sure I have given Him quite the laugh as I've looked for Him and waited for Him. I am His beloved daughter and He is with me always and always. It is just that the darkness strips all other distractions away till I am face-to-face with the truth. I am loved and I am His.]

I've never been very good at waiting. I've never been very good at knowing what to do with fear. Stripped of Watts' battle plan and launched back into the sea, I have had to come face-to-face again with my fears of losing my son and my cancer-mama PTSD (it is a real thing, y'all) and had to wrestle through what it looks like to not wait (and have my life on hold till Watts is considered cured in 4 1/2 years) but to instead learn how to LIVE. I have made much progress but still have a ways to go.

So, I just wanted to say that I'm still here, despite the blog writing hiatus, but I'm relearning how to swim. Thank you for your prayers for our family. We have been sustained by them.

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!]