Tuesday, June 23, 2015

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!]

Wednesday, June 10, 2015

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.


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!


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.  

Monday, June 1, 2015

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.

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