Superman's ready to go!

We are admitting this morning for Watts' last scheduled inpatient stay! Will write more later...

Easter Eve

I'm thankful for the contrasting themes of darkness and light, death and resurrection. Easter weekend beautifully sets these paradoxes up for us to consider and lean into. These are some thoughts which I shared before our Maundy Thursday gathering at Hope Chapel this week...

About a year ago, Hannah and I bought a woodcut print by an artist named Sister Mary Grace. She is a Dominican Nun who spent most of her life in a monastery in Cincinnati, Oh. She is old now, and I heard her speak last year and was so impressed with her experiences of hope, even in her life's work serving mostly the poor and disabled. After she spoke I went to the back of the room and looked at her artwork. One piece in particular struck my eye; the one that's hanging in our living room now. It is called "At the heart of darkness". At first glance it is a sort of web of dark strands, orbiting around the center of the piece. They are shadowy and mysterious, and give some feeling of "lost-ness". But as you come closer, you realize that the strands are circling around something in particular: printed in gold leaf, it's a candle. It's small, but it is burning, even in the swirling darkness. In the heart of darkness, she is reminding us, there is light.

I think it is the same idea Tolkien had in The Return of the King when Sam and Frodo are under the dark Mordor sky and Sam looks up to see a single star through the blackness:

“Like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing: there was light and high beauty for ever beyond its reach.” 

The bible's story of redemption is filled with moments that seem hopeless. This weekend we mark the occasions of Jesus' last supper with his friends, his betrayal and death. Those near Jesus would feel that all hope was lost. And of course we experience this in our lives as well. But the Bible reminds us that God's covenant, his promise to be faithful, it persists. It pursues and perseveres through dark hours. It leaves graves empty and debts forgiven and it will prove to to be the "high beauty" that puts our weary souls at rest.

Sweet smiles.

This little guy hasn't thrown up in two days AND has been eating more solids! 

Some other fun things Watts has been doing lately:

He has been parroting a lot of words and his new obsession is to repeat "I know". Say, for example, I'm talking on the phone in the car and say something like, "I know it's suppose to be sunny tomorrow..." Within seconds, I'll hear a high-pitch echo from the back saying, "I know! I know! I know!" Of course we think it's hilarious...as does he.

He has taken to kissing a lot. Every night when I try to coerce him to go to sleep he will kiss me around twenty times...on my cheeks, lips, and will even pull my head down so he can kiss my forehead. Delaying sleep, yes, but still so cute!

He is also becoming quite the (almost) two-year-old. "No" is his favorite word and you can count on him running in the opposite direction if you tell him to come to you.

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And a picture of our girl. She is sporting hypafix because she wanted to be like Watts. I don't think Michael or I could possibly say enough about our daughter and her bravery, creativity, and enthusiasm for life. She has made the past 10 months, no, the past 3 and 1/2 years immeasurably more delightful.

Some Piper quotes as of late:

"Mama, you weren't listening to me and that actually hurt my feelings!"

After rhyming a million words and trying to make jokes, Piper said, "Watts, you have toes in your nose... No, wait! You have a hose in your nose!" And then both kids pointed to the NG tube and laughed hysterically.

Piper randomly said this to me after seeing a bird out of the car window: "Mama, remember, it is usually the smallest sparrow that God chooses."

Week update.

The living room is cozy-dark as I sip my coffee and wait for the sun to decide that it is, indeed, morning. Watts is already on the move and I know that it will take me hours (and 2 cups of coffee) to catch up to his energy level.

It is the end of another (work) week and once again I am befuddled at how days can be so long and yet fly by so quickly. The weekend will be one spent entirely outside hopefully-- I am so thankful for spring and all of its hopeful beauty.

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Watts is trucking along in treatment. His counts were still in a good range on Wednesday so we trekked to Brenner again yesterday for his IV Methotrexate and weekly appointment. He has one more week of 6-mp and then we are scheduled to admit next Thursday. We've asked to push back the admission three days until Monday, though, since Easter week is crazy in the church world and Michael will be tied up completely. So, Monday, April 21st, will be our last scheduled hospital stay! This is both exciting and terrifying.

Watts' appetite seems to be possibly-maybe-sort of-slowly improving this week. He has eaten a few bites of pasta, some guacamole and some bagel. His nausea has still been a problem (oddly enough since his appetite during the day is improving), though, and he's thrown up four out of the last five nights after we have given him his nightly oral chemo. And that is even with the maximum dose of Zofran (anti-nausea med) and a dose of Benadryl (for break-through nausea). We are using the NG tube for about 75% of his nutritional needs at this point and have even had to put fluids down it on a couple days.

With the nausea, of course, comes a lot of nights of broken sleep. Watts has been waking up around four times a night and his morning wake-up time has been between 4:30am and 5:30am. Ugh. With his erratic sleep schedule combined with Piper's sleep terrors and desire to co-sleep, Michael and I are walking zombies.

All of this sleeplessness and nutrition-stress is put into perspective, though, after spending any amount of time with Gideon Watts. He is hilarious, affectionate, and a true trooper dealing with all of these crazy treatments. It is amazing (and sad) to realize that he has had cancer and been in treatment for more than half of his life. A world of needles and doctors and feeling yucky is the norm for him. [Side-note: He knows all of the steps at our clinic appointments and will lead the way through getting vitals, stepping on the scale and holding his head still to get his height. With the doctor, he grabs the stethoscope and puts it first on his heart and then moves it, unprompted, to his belly and turns his head to show his ears when the doctor grabs the otoscope and then opens his mouth and sticks out his tongue. The tears start when we mask up to access his port and he starts cheering as soon as the nurse de-accesses him.]

What an amazing little warrior!

A little progress.

Watts ate some breakfast this morning-- A few bites of blueberry bagel to be exact. Go Watts! 

Weekly Brenner trek.

We had Watts' clinic appointment for chemo (IV MTX) today. He was, once again, a trooper and Piper is officially the secret weapon for distracting Watts while the nurses access his port. His weight only dropped a little bit this week (yay for pumping and bolus feeds!) and his ANC is right around 1400. No transfusions needed.

As we were leaving we also got to see another little girl who is about a year ahead of Watts in treatment and who is doing fantastic. She has a head full of hair, chubby cheeks, and looks just as healthy and "normal" as can be. Her mom said she is finally beginning to see the light at the end of the tunnel. It was a breath of fresh air to see a family so close to the end of treatment!

GI issues.

Although looking at the big picture, Watts is doing great in treatment, he has been having some ongoing problems with his gut for the past several weeks. His appetite has been sporadic, he has had bouts of watery diarrhea, and has seemed nauseated off and on (gagging and throwing up occasionally). Although we initially thought that his PCP prophylaxis was causing the problems, through the process of elimination we've finally determined that his daily at-home chemo, Mercaptopurine (6-mp), is the culprit. Within 48 hours of starting back on the drug, Watts' appetite completely disappears. It takes several days for it to return but the nausea and diarrhea seems to still linger. This drug is one that Watts will be on 75% of the time for the next 14 months. It is not suppose to have any side effects but the doctors have said that they know very little about the side effects for infants on this drug. [Since I am a part of an online support group for Infant ALL parents, I know that many of the infants have GI issues.]

I was able to talk to Watts' primary oncologist just a little while ago and we came up with a plan to address the nausea/lack of appetite. Watts is going to be on scheduled zofran at the max. dose in hopes to eliminate the nausea and he will start on an appetite stimulate on Thursday if his appetite hasn't improved. Our oncologist is also going to look into finding a different manufacturer for Watts' chemo-- there is a slight chance that Watts is sensitive to the way that the manufacturer processes the drug, not the drug itself. Probiotics (for the diarrhea) are not an option right now due to Watts' weakened immune system, but our oncologist did say that we can reevaluate its use after Watts gets to maintenance.

I am thankful for a plan and am trying to not stress. I hate, HATE, that this drug will be in Watts' system for the next 14 months but I also know that it is for his good. It is so easy for me to forget that when I am trying to get Watts to eat a single pretzel stick.

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On a less medical and more happy note, here are some cute pictures of our 20 month old (who is currently obsessed sunglasses and hats):