Wednesday, April 30, 2014

Fever's down.

We had a super long night last with fevers reaching 103 on Tylenol, but Watts seems to be feeling better now and his fever has dropped down to a normal range (with Tylenol). Cultures should be back around 5pm and they are also now running a virus panel to make sure they aren't missing anything. 

Thanks for the continued prayers.

Ps. This shirt was unintentional but seems appropriate for the last 24, the last 11 months.

Tuesday, April 29, 2014

Admitted for fever.

Well, we are back in 911... We've been joking with the nurses that we just missed them too much and had to come back. 

Watts' temperature continued to hover right under 100 this afternoon but his behavior seemed to grow more lethargic and pitiful. At 3pm, Michael came home due to my increasing concern and we called Brenner to set up a last minute appointment. We just wanted some other eyes on him before the clinic closed at 5pm. We are NOT fans of coming through the ER after hours. By the time we got to Brenner at 4:30 (due to horrible, horrible traffic), his temperature was 101.8 which is an automatic admittance. Cultures were drawn, antibiotic and fluids started, and Watts finally got some Tylenol and seemed to start feeling better.

So now we're here again... Lord willing, his cultures will be negative tomorrow. At this point, they are not running a virus panel on him because his only symptoms are a fever and lethargy. If his cultures come back negative, then most likely the fevers are simply his body's response to the neutropenia. 

Regardless of the cause of the fevers, we need four things to get us out of here: 1) he needs to be afebrile (no fever), 2) he needs negative cultures, 3) his counts have to recover (or at least be trending up), and 4) he has to look well. Most likely we will be here through the weekend but we should know more once the cultures come back. 

At this moment, Watts is sleeping, Piper is giddy to be spending the night in the hospital, and Michael and I are tired but hanging in. Thank you for the prayers coming our way. 

Updated to add: Watts' temperature went back up to 102 with Tylenol. We are keeping a close eye on him and hoping for some good rest for his fever-weary body tonight.

Not feeling so good.

How quickly things can change... After great day yesterday, Watts had a rough night and has been cranky and weepy all morning. His temperature is currently hovering right below 100. We are doing a lot of cuddling today and have our bags packed just in case. Please pray for protection over Watts...for no (higher) fevers and for no infections. Thank you!

Monday, April 28, 2014

No-fever dance.

The kids and I went to check Watts' counts this morning and, as expected, Watts' ANC is zero. This means that he is severely neutropenic and incredibly susceptible to infections, fevers, etc. The neutropenia is due to his last round of treatment (the chemo can't differentiate between healthy and mutated white blood cells and wipes out all of them).

Please pray that Watts remains healthy during this time and that his counts recover quickly. We are giving him daily injections of the drug neupogen to help his WBC (white blood count) recover and obviously keeping him isolated at home.

Other than the neutropenia, Watts is doing great. He seems happy to be home and is his normal active, goofy self. We are adjusting to not having the convenience of the ng tube and are learning how to give his medications orally. Watts' appetite is okay right now but he will only eat if he is out of his high chair and if we pop the food in his mouth as he plays...he is just too busy to slow down, I guess! Current foods that he'll tolerate are: Larabars, Veggie sticks, and sometimes Chick-fil-a chicken nuggets or aged cheddar. He also still nurses 3-4 times a day. I may or not have googled, "Can a toddler survive on Larabars and breast milk only?" Haha!

PS. Watts challenged the front sidewalk to a fight and I'm not sure who won:) Thankfully this was before his counts dropped otherwise we probably would have been a lot more panicked about the scratches (open wounds are not, not good while neutropenic).
We definitely have a rough-in-tumble boy on our hands!

Friday, April 25, 2014


Day 5. I can hardly believe it!

Watts is napping. His head, newly covered with blond fuzz rests up under my chin and his legs are tucked up against my belly as he sleeps. The shades are drawn here in 911 and the sound machine drowns out the voices from the people next door and the hustle and bustle from the hallway.

Michael is taking load after load of our stuff down to the car so that when the last drop of Mesna drips into his port in less than an hour, we can walk out of here. Say our goodbyes, take a few pictures, and go HOME.

What a day! Tears have easily for me as I reflect back on how far we've come. Today we choose to live in joy and without fear and we celebrate that THIS IS OUR LAST SCHEDULED INPATIENT STAY! Forever and ever, amen.

The hero of the, the last 11 months.

Notice something missing? The NG tube was pulled out today in hopes of clearing up a lingering cough and ongoing nasal discharge He has been eating great while off of his at-home chemo, 6-mp, so the doctors decided to pull the NG tube out for the two weeks we'll be home and off chemo during count recovery. If he miraculously keeps his appetite up when he starts back on the 6-mp, then he'll get to keep it out. If not, then they'll put it back in and hopefully the cough/irritation in his throat will have had a chance to heal by then. Regardless, we are loving seeing his whole face for really the first time (for longing than a quick tube change) in almost a year!

Thursday, April 24, 2014

Day 4.

Just pictures for today. All went well... 4 days down, 1 to go!

Hanging out with papa.

A little guitar playing to pass the time.

Comparing ports with cancer-rockstar-friend, Alisa.

Helicopter watching.

Being silly.

Naptime snuggles.

Wednesday, April 23, 2014

Day 3.

Day 3 is off to a grumpy start for our little Watty. He is getting an IVIG transfusion before chemo starts today and with this transfusion he has to be pre-medicated with Benadryl and Tylenol (and he'll continue these meds every 4 hrs for the next 24 hrs). We are thinking that the Benadryl is making him feel loopy and he has a really, really short leash with this transfusion and has to get frequent vitals. No fun at all.

He's going to get an hour break between the transfusion and the start of chemo so we plan to let him run the halls a bit (with IV pole in tow, of course) and hopefully get some energy out.

2 days down, 3 to go! Watts is a trooper.

Tuesday, April 22, 2014

Day 2. This is a long one.

Last night Watts gifted us a fantastic night of rest by sleeping from 9:30pm to 6:30am with only one wake-up to nurse. This would be considered an amazing night of sleep at home, at the hospital it seems like a small miracle. Of course the good sleep was made possible by our ninja night nurses and many prayers, I'm sure!

Today we will start chemo again around 11am. [Updated to add: chemo now done!] Until then we will continue chasing Watts around the halls (with IV pole in tow) and pulling out all the tricks out of our proverbial hat to entertain this crazy toddler. He is an absolute hoot these days and I think is enjoying having an even larger audience up here with the nurses and doctors. Last night he put on quite the show before bed by "singing," shaking his hips, and doing some hilarious head shakes that had the whole room in stitches. Kids are so resilient.

It has been interesting coming back to the hospital after nine (or so) weeks at home. In so many ways, the hospital is our second home. We return and fall back into our hospital routines easily and we love being surrounded by our nurses and doctors and so many people who have been with us since the very beginning. They "get" cancer and have been with us through some very hard days and long nights. It is also comforting to have Watts  monitored closely and to have so much medical support at our finger tips. In other ways, however, coming back to an inpatient stay is agony after so many weeks at home. I get flashbacks to harder hospital stays and it is a reminder that this leukemia journey is very real and very serious. It is crazy to think that this, Lord-willing, is it...

This is our last scheduled hospital stay. It feels weird to even type that. I am a mix of emotions when I think about it... there is excitement, nervousness, fear, and probably a lot more complex emotions that have yet to surface. We have a year more of outpatient treatment but this is the last big assault against the leukemia. After this, we wait and keep trucking along with at-home chemo and Brenner appts and pray.

Cancer is ripe field for gleaning character-building lessons and encountering one's sinful nature, let me tell you. I can wallow in the fears of tomorrow (and I do a lot)... I can read the statistics, stalk other Infant ALL stories, and literally work myself into a frenzy of worry and fear about the days ahead. But to what purpose? Somewhere I read that worry is the thief of joys and I'm finding that to be true. Seems like a no-brainer, but when it comes to my child and the future, worry seems to be second-nature to me. Add cancer into the mix and my grip becomes a white-knuckle one. As the old song says:

All to Jesus I surrender
All to Him I freely give
 I will ever love and trust Him
 In His presence daily live
 All to Jesus I surrender
 Humbly at His feet I bow
Worldly pleasures all forsaken
 Take me, Jesus, take me now
 I surrender all

 I sing that but I don't really mean it... my lyrics would say, "I surrender all except the health of my kids, Lord." Because really, how is one suppose to muster up the strength or maybe have enough faith and trust to offer up one's kids? I could never be Abraham and freely offer up Isaac. And yet, somehow, I am called to do that. Not literally to put my child on an altar and (be willing to) drive a knife in his heart, but to simply let go of pretending I'm in control of my children's lives and stories and to trust that He is... even if/when their stories go in directions that I wouldn't choose.

This stuff is hard and I fail at it 5 million times a day.

What I do know and what I keep reminding myself is of those early horrific PICU days... when Watty was so close to not making it and our life felt like a living nightmare: He was there. His grace was truly sufficient for those days and His peace surpassed understanding. Remembering His faithfulness in the past encourages me to trust Him with the future. With my babies. With this cancer. And lastly and most importantly, I have to keep looking to the cross. As I remember His death and resurrection, I am reminded of his undying love for me and His desire for my good. And remember that, in due time, all shall be made new.

I believe, Lord, help my unbelief.

Monday, April 21, 2014

Day 1.

One day of chemo is down! Michael, Watts, and I got to Brenner this morning at 9am and had an appointment on clinic-side with Dr Russell. He gave the green light to admit for this week of chemo so Watts had his port accessed and we headed over to Rm 911 (ominous number, no?). 

Watts had a two hours of fluid followed by two hours of Etopside, thirty minutes of Cytoxan, and a couple hours of Mesna. So far, so good. We have four more days of the exact same drugs and we're hopeful that Watts will tolerate this drug cocktail just as well as he has in the past (with minimal side effects and no medical drama). We'll discharge late Friday afternoon and return home for count recovery.

We are so thankful to be starting our last scheduled hospital stay and so glad to see our beloved nurses as well as the awesome Ronald McDonald staff! 

Superman's ready to go!

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

Saturday, April 19, 2014

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.

Sunday, April 13, 2014

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 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.


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."

Friday, April 11, 2014

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.

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!

Saturday, April 5, 2014

A little progress.

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

Thursday, April 3, 2014

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!

Tuesday, April 1, 2014

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.


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):

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