4 months.

Today marks our four month "diagnosis anniversary". Four months. And four months five days since he first got sick. He first spiked a fever on May 25th, we got the diagnosis of leukemia on the 29th, and the official diagnosis of Infant ALL on the 30th. Since then we have spent 75+ nights in the hospital (by November it will be over 100), countless hours in the clinic, and have put numerous miles on our car driving back and forth to Brenner. We have also sold a house, bought a house, and made the Ronald McDonald House our second home. Watts has had 60+ days of chemo, 8 lumbar punctures, 2 surgeries, 3 ng tubes, 2 central lines, 2 central line repairs, 5 bone marrow biopsies, 2 EKGs, 10 nights (intubated and sedated) in the PICU, 1 ambulance ride, 6 ultrasounds, 4 ER visits, 1 blood stream infection, 2 contaminated blood cultures (resulting in 15 extra hospital days), and numerous dressing changes. Gideon Watts, the warrior, indeed.

We grieve that this day exists but celebrate the life and bravery of this little guy. It is an honor to be his mama.

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Update:

We are now home! Watts nursed, crawled around, laughed with his sister, and is now sleeping. After looking back at posts about the very first round of MTX, I was reminded that he is currently doing SO much better than he did before. Thank you for the thoughts and prayers. Keep'm coming...we're not out of the woods yet.

Day 4

Day 4. Foley is finally out. Watts' levels look good (mtx has cleared his system) so we'll go home at 72 hrs (5:30pm tonight). We've had a rough two nights and are more than ready to get home to our own beds and hopefully get more rest.

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Watts stopped eating/nursing this morning. The doctors and I are hoping that he is just nauseated from the chemo and isn't showing early signs of mucositis. We'll know in time. Side effects will peak in a few days.

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On a somber note, an old childhood friend lost his three year old daughter two nights ago...she unexpectedly died in her sleep. There are no words to say. 

Come quickly, Lord Jesus.

Day 2 (Rambles)

I bounce a lot. During the most uncomfortable times for Watts in the hospital,  the Ergo seems to calm him down, especially if I rock back and forth and up and down. For hours sometimes. His body smooshed up against mine must remind him of being in the womb, he quiets and drifts off to sleep almost immediately.

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Michael is here, which is the blessed part of having hospital stays fall over the weekend (Michael's weekend is Friday and Saturday). It makes a huge difference for me to have my partner/teammate close by. So much of our days, it feels, is "divide and conquer". Michael faithfully works every day at the church and handles so much of the house and money stuff. My role is mostly medical and children-oriented. I schedule and go to appointments with Watts, navigate through Watts' protocol, line-up care for Piper, and do the bulk of all hospital stays. During the inpatient week days, Michael comes to relieve me after work and tries (when we have overnight help for Piper) to always spend the night in the hospital room with us. I think both Watts and I sleep better with Michael/Papa close by.

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Watts is hanging in. We have three more hours of HD Methotrexate and then they'll start the recovery drug. Yesterday Watts was grumpy and irritable after the lumbar puncture (who wouldn't be?!) but today he seems happier except for having a foley in...he spends half the day clawing at it. [He has the catheter in to keep the chemo pee off of his little bottom.] His urine will be checked at 42, 48, and 72 hours to see how his little body is clearing the drug. We will get to go home when the level is below 0.1...typically 72-96 hours after chemo first started. Side effects will start showing up 4-7 days post chemo. 

Please pray for sweet Watts. And us. But mostly Watts. This is a powerful drug that wrecked havoc on his little body last time. We want the drug to do its dirty work of killing leukemia cells and then for it to get the heck out of his body. Untouched, Lord-willing.

Consolidation, Day 1

We are admitted, pre-chemo fluid is running, lumbar puncture is done (chemo in his spinal fluid while sedated) and he's about to receive a IVIG transfusion. This boy was all smiles this morning, despite having not eaten for a few hours (NPO for sedation).

Watts is amazing.

Here we go!

Watts' counts are up! His ANC is 967 (only needed to be 750 to get back on treatment). I did a happy dance in the doctor's office, let out a sigh of relief, and then immediately resumed my normal stance of hating treatment and setting my sights on the next long break (at least, what was my normal stance prior to this long break). After all, you can't stay excited about starting back on HD Methatrexate for very long.

So, I'm waiting for the final word from Brenner, but Watts should be getting a lumbar puncture with chemo first thing tomorrow morning followed by 3-4 days of HD Methotrexate and Leucovorin (the rescue drug).

We are thankful that Watts' counts have recovered but also appreciate prayers as this has been the worst drug so far on our sweet Watts.

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On a different note, we got to see with my big brother today. We visited, the kids' vied for Caleb's attention, and we celebrated Watts' high(er) counts by eating lunch at Sticks and Stones.

Tuesday and nerves.

We are still home.

Watts is happy and seems to be absolutely thriving with extra time away from Brenner, as we all are.

It seems to be a battlefield of the mind for me today, however, not give in to my waves of anxiety of him being off of treatment for so long. I rocked him to sleep for his nap after a playful, "normal" morning, and somewhere in between Jesus Loves Me and Edelweiss, I literally began to picture leukemia cells spreading through his little body, creeping out of dark corners and running amok, with no chemo army present to fight back. I stopped the rocker and begged out a silent prayer for peace. For freedom from fears. For the ability to love on my kiddos during this "break" in treatment and not squander the time with premature fears.

I hate treatment, hate the hospital stays, hate the side effects on our sweet boy, but being off of treatment is hard on my nerves too. What an upside down world I am living in that "normal" days bring about waves of anxiety! Hard days filled with side effects, sadly, feel more familiar.

I had an encouraging talk with another leukemia mama (thanks, Mandy!) a little while ago and feel like I can breathe again. We go tomorrow at 2:30pm to check his counts and, if his ANC is 750 or higher, he will be admitted on Thursday morning. If they aren't high enough, we will keep waiting.

I lift up my eyes to the hills.

From where does my help come?

2 My help comes from the Lord,

who made heaven and earth.

3 He will not let your foot be moved;

he who keeps you will not slumber.

4 Behold, he who keeps Israel

will neither slumber nor sleep.

5 The Lord is your keeper;

the Lord is your shade on your right hand.

6 The sun shall not strike you by day,

nor the moon by night.

7 The Lord will keep you from all evil;

he will keep your life.

8 The Lord will keep

your going out and your coming in

from this time forth and forevermore.

(Psalm 121, ESV)

[Disclaimer: the doctors are not worried about Watts and relapse at this point... this is only going through my own head...probably because I am reading too many other Infant ALL stories.]

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We have been thoroughly enjoying:

Watching a butterfly emerge from a chrysalis.

Painting.

Playing rock, paper, scissors...Pumpkin! [Piper's version of the game.]

Visiting with Dee before she leaves us for the Canadians;)

Decorating for autumn...even without having painted walls.

Monday and counts.

Watts' counts are still too low to start the next round of chemo. The doctors do not seem worried at this point-- his little body and immune system just need more time to recover from the powerful chemo drugs. I am trying to follow their lead and not worry too. Although time at home with Watts feeling well is precious, any delay in treatment can start me thinking about the what-ifs and the unknowns... But those questions are best left unexplored. I would rather soak up this jolly boy.

Saturday pictures.

 

 

 

 

 

Thursday.

I feel thankful this Thursday. It might be because our boy is still acting jolly and active, or the gorgeous fall weather, or that front porch sitting is probably my favorite thing to do (and we do a lot of it these days)... whatever it is, I am filled with gratitude.

Watts and I met with our new pediatrician here in Greensboro and were able to do a CBC without traveling all the way to Winston Salem. Of course, I nearly had a panic attack taking Watts into a germ-filled doctor's office, but I calmed down after they whisked us straight back to a room (per my request). Hopefully, once I get the thumbs-up from our insurance company, we can start going to the pediatrician when Watts only needs labs done. It probably saved me 2-3 hours in travel and wait time. And thank you, Cathy, for hanging out with Piper!

Watts' labs show that, while his body does seem to be recovering, he is not ready to start the Consolidation round tomorrow. His white blood count and platelets have doubled but his ANC has dropped to 150. A little perspective: I've read that a normal child's ANC is somewhere around 3,000-5,000. An ANC below 1,000 means a child is neutropenic. When the ANC is lower than 500, they are considered severely neutropenic and at risk of developing a serious infection.
We'll hang low this weekend, check his CBC again in a couple days, and hopefully he'll be ready sometime next week.

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Commonly asked questions:

Why does he have a tube in his nose?
Watts has an NG tube in his nose as a preventative measure. He first got it when he was in the PICU intubated and sedated and we've opted (and have been strongly encouraged by our doctors) to keep it in ever since. He has maintained his weight since all of this started four months ago but also hasn't gained any either. We have been told by his doctors that the kids with great nutrition tend to do the best during treatment, so we have kept the tube in and used it whenever his appetite drops or when he has mucositis in his mouth, etc. We also can give him all his oral medications down the tube which has been a huge plus!

Does he eat anything by mouth?
Watts still nurses when he feels well. When he doesn't, I pump and put it down the NG tube along with Pediasure. He also drinks water out of a sippy cup but will not drink milk or juice. He loves Baby Goldfish and Lance Peanut Butter Crackers. He will try most crackers but will not eat anything that is sweet or cold or pureed. He also wont eat anything off of a spoon. Or any fruit. He likes boxed macaroni and cheese and homemade spaghetti. I've tried mixing in pureed veggies in with the noodles but have not been successful with sneaking them by him. We have been told that this is normal for babies on chemo and are trying to not stress about his food aversions.

Can he walk yet?
Not yet. We have been told to expect delays but overall have been really impressed with Watts' determination and drive. He is crawling, pulling up on things, cruising, and even attempting to say some words. 

New mercies.

The wind chimes dance out on the front porch, its song carries into the living room where I sit as the babies nap. It has been a blessed, sweet morning.

After an extremely hard night with Watts (hourly diarrhea due to antibiotics + bad diaper rash) and a three year old who has now decided she wants to co-sleep, we awoke to happy kids and a cool, Fall-ish day. After putting a call in to the doctor(s) and given the okay to monitor Watts at home, the morning became wide-open for the kids and me.

We played. Opened windows to air out the house and swept the floors so as not to feed the mice (me). Put on dresses to twirl in (Piper) and ate a couple handfuls of Baby Goldfish (Watts). Crawled around naked for some doctor ordered air-time (Watts) and got peed on (me).  Danced to Fresh Beat Band (Piper) and ate another snack (all of us). Tried to turn the car around in the backyard and ran over a potted plant (me).

Mid-morning we ventured out to run some errands, armed with masks, wipes, and antibacterial soap. We walked the aisles at Target to gather our needed items and bought a winter hat for Watts that looks like a puppy dog, diapers, and random food items for Watts to try (his chemo-taste buds seem to be in full-swing).

I made grilled cheese sandwiches and we ate them out on the porch. Watts laughed and smashed peas and Piper and I celebrated as he drank a few sips of (expensive) boxed milk. Packaging is everything, apparently, even for a 14 month old.

It all felt strangely normal. And normal is such a gift. We've had some hard days lately... honestly, some hard months... but oh! the sweetness of the moments filled with joy? They almost take my breath away. I almost had to pinch myself today to make sure this is real life.

 

 His mercies are truly new every morning.

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Remember my affliction and my wanderings,

the wormwood and the gall!

My soul continually remembers it

and is bowed down within me.

But this I call to mind,

and therefore I have hope:

The steadfast love of the Lord never ceases;

 His mercies never come to an end;

they are new every morning;

great is your faithfulness.

“The Lord is my portion,” says my soul,

“therefore I will hope in him.”

The Lord is good to those who wait for him,

to the soul who seeks him.

It is good that one should wait quietly

for the salvation of the Lord.

Lamentation 3:19-26

Welcome back, sweet boy.

The steroid cloud has lifted and we have our Watty back. Thank you, Lord! I am sure there are some lingering effects of steroids in his system, but, when I set him on the ground to play earlier today, he crawled towards some toys instead of becoming hysterical. He also didn't scream and smack Piper when she touched him at lunch or have separation anxiety when I walked out of the room to get my phone. So very thankful.

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I took Watts to clinic this morning and found out that all of his counts have dropped. He doesn't need any transfusions at this point, but we definitely will not be starting chemo today as originally scheduled. We will check his counts again on Thursday to see whether they have recovered at all. Although no one likes to delay treatment, time at home NOT on steroids will be a blessing this week.

For those that are curious, we just finished up the Re-Induction phase of treatment and are about to start the Consolidation phase. It is 49 days long and involves a lot of inpatient time. We will be doing 2 stays inpatient for HD Methotrexate (4 days long each), 1 stay for Etopside (5 days), and 1 stay for HD Cytarabine (21 days). Watts will also be getting triple intrathecal therapy with MTX, Hydrocortisone, and ARAC to start off the Consolidation round. After the Consolidation phase is over, most of Watts' chemo will be outpatient!

Through all of this, please be praying for his little immune system and organs. We want the leukemia cells to die, but we also want the powerful chemo drugs to leave the rest of his organs and his immune system unharmed.

sweet Piper.

I just spent an hour writing a post that just disappeared somewhere in blog land. I'm taking it as a sign that it wasn't meant to be posted, but it's still frustrating. I was writing about my girl. Her heart. The impact all of this has had on her. And my prayer for her young life... That all of this chaos, this exposure to pain (both physically and emotionally) might shape her into a truly beautiful and compassionate young woman. Soft and strong. That she might move towards people that are sad and hurting with ease because she is not afraid of emotion or scared of physical ailments. That she might see the beauty of the Gospel woven throughout our family's story...when we are weak, He is strong.

The other day I overheard Piper sweeping in the other room. She became frustrated navigating around the dining room table and threw the broom down, discouraged. I was about to move in with my talk about patience and perseverance, when I heard her small voice praying, "God, I can't do this. Can you help me?" Her words mirrored the prayer that I pray outloud on a daily basis during trying moments. She is listening, she is watching, and, I pray, that she sees and encounters a very big God through all of this.

Saturday smiles.

Today was a better day for our sweet boy! Maybe it was because Gigi was in town and worked her grandma magic on him, or possibly because he knows after tomorrow he'll get a break from steroids, or maybe because it feels like Fall outside... whatever it is, we'll take it!

At clinic yesterday we learned that his ANC dropped from 1700 (boosted up from neupogen shots) to 600 after discontinuing the shots. The doctors aren't sure if his counts are on their way up or down so we've been told to lay low this weekend. We are scheduled to start the next phase of his protocol on monday morning if his counts are above 750 and his platelets are above 75 (platelets are currently 40). It is looking there will probably be some kind if delay unless we see some major jumps in counts over the weekend...which may not be such a bad thing to have some more time at home before starting this next intense round of treatment, although I always hate delays.

Tired

Today was another challenging one with Watts. In a couple of days he should bounce back to his normal jolly self, with little to no memory of the yucky steroids, but I'm usually not as quick to recover.

The last few weeks have been hard ones on us. We are very worn out, in every sense of the word.  Michael and I have had several moments lately, typically once we collapse into bed after coercing our babies to sleep, where we have looked at each other and asked, "Is this real life?" or "How are we suppose to keep doing this?" We haven't quite figured out those questions yet but we are trying to take it all one day at a time. 

I've found myself singing this hymn in the harder moments:

Great is Thy faithfulness,” O God my Father,

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not

As Thou hast been Thou forever wilt be.

“Great is Thy faithfulness!” “Great is Thy faithfulness!“

Morning by morning new mercies I see;

All I have needed Thy hand hath provided—

 “Great is Thy faithfulness,” Lord, unto me!

 

Home and 'roid rage.

Watts just went down so this will be short (before he's back up), but we are home. We are very, very thankful that the positive culture was deemed contaminated and that we were able to go home without completing all of the 10 day antibiotic course.

We came home to our new house with an angry baby, unfortunately. Watts is back on steroids for the next week as part of his protocol and he is exhibiting all of the awful emotional side effects... affectionately called "'roid rage". Sigh. These are some long, long days of screaming and crying and not knowing why he's agitated or what he wants. We have moments of happiness that we try to cling to but overall it is very challenging...we miss our jolly little guy.

Monday update (day 5 of ER hospital stay)

Babies are both napping in the room, by some small miracle and a few conversations with the three year old. We are all well. Stir-crazy, but well. The team decided to take Watts off of antibiotics and observe him for 24 hours. If he remains fever-free, we might be going home tomorrow.

Below is our cute spaghetti-face boy...

Sunday.

Watts is doing great. No fevers, no more positive cultures, and his ANC is a little higher today( (100).  Dr Castellino, one of the attendings, seems to think that the positive culture was not really a blood stream infection but was a contaminated culture from when the ER drew the blood. This would definitely be best case scenerio. Tomorrow they are going to try taking him off all antibiotics to see if his fever comes back. If it doesn't and cultures continue to come back negative, we might be going home in a couple days! I was thinking that we would be doing a 10 day regimen of antibiotics so anything less than that would be great. 

Tomorrow morning Watts will be getting some chemo (vincristine), a lumbar puncture with more chemo drugs (methotrexate, hydrocortisone, and another that I can't remember), and he'll start back on those crazy steroids. All of these were suppose to be done outpatient, but we are happy that we can stay on track with treatment and do them while we are here. We are also still doing daily neupogen shots to boost his white blood count.

Off to snuggle my now-sleeping wild man.

Silly boy.

Morning update

Watts is doing great. He slept well last night, only has a low grade, and overall is his normal goofball self. It is so, so, good for us to see and puts a lot of worries at bay. The doctors still haven't rounded today and we haven't found out specifically what kind of infection is going on but we were told yesterday that his behavior is one of the biggest indicators of how his little body is handling and fighting the infection. 

If that's the case, then I think Watts is kicking the infection's butt! Please keep praying for protection for his little body, for his ANC to rise, and for strength and patience for Piper, Watts, and me.

Edited to add: 

Doctors just rounded and the infection is coagulase negative staph in his line (the same infection that he had before), ANC is still at zero, and he needs another platelet transfusion. This is one of the "good" bloodstream infections to have so we are thankful! It does bring up some questions about possible line contamination... This is a new Hickman since the last infection so it has not been residing there all along, which leads us to question how he has acquired it twice in the last month. The team is going to be doing some investigation but seemed pleased with how well Watts is doing.

Thankful.

Thankful for many things tonight...

For this little guy, who stood for the first time today.

For Piper Bloom, who is hilarious and resilient and always, always has us laughing.

For my man, who is a rock for this family.

For encouraging words from kind doctors.

For coffee brought from a friend this morning.

For milkshakes brought from friends tonight (I'm going to miss you, Anna Black).

For our ninja-night nurse, Kimberly

For warm hugs from RMH staff.

For texts, emails, and calls of encouragement today from friends and family...we feel loved and prayed for. 

Not what we were hoping for....

Blood cultures just came back with some positive growth in his red lumen. Gram Positive Cocci, we are told. They'll know more once they test for more sensitivities. I'm in shock, to be honest, and discouraged, although we are told this can happen with treatment. Three blood stream infections in three months. As Piper would say, "what in the world??" The good news is other than not really eating and a low-grade fever, Watts seems to be doing well.

Morning smiles.

Cultures are negative, meaning that in 24 hours they haven't grown anything. Good news for our little guy! Also, fever has stayed down off of Tylenol this morning. His ANC is still zero and he needs a blood transfusion and most likely another platelet transfusion, but overall we are encouraged and very thankful!

Fever and smiles.

Watts' fever has been manageable with Tylenol today and we've even gotten some smiles this evening! Hoping tonight is a good night of rest and that he wakes up fever free in the morning.

Still waiting.

Fever is up to 103. Still waiting on blood cultures to come back. Getting antibiotics today as well as some platelets.

ER trip.

Watts' spiked a fever late last night so we made an immediate trip to the ER here at Brenner. We are admitted and waiting for blood cultures to come back. He could have fever from his low ANC (it is currently zero), from a common virus, or from a bloodstream infection. Regardless, we are here until his fever drops and his ANC starts climbing. Please pray that it isn't a bloodstream infection. Some bloodstream infections can be "minor" but some can also be life threatening in a baby with such a compromised immune system.

Ramblings from Papa

Yesterday, I (Michael) think I hit a new waterline of exhaustion. The combination of the past 3 months of hospital stays, selling and buying houses,  moving out-of and into those houses, and a little guy feeling terrible from so many drugs had me feeling not only tired, but aggravated by nearly everything. It's that jittery feeling like you just need to escape, but to what? And to where? I have such a mixture of emotions about life right now. For example, we're in this beautiful house-- our dream house!--  and we had about 50+ people help us get moved and settled, but we've had so many bad nights of sleep in a row that it's hard to feel relaxed in it. So often I find myself in this strange mixture of feeling overwhelmingly grateful and sulking, like I'm 3 years old again.

Speaking of 3-year-olds... Piper is completely adorable right now. Her imagination is blossoming and she's loving the new house. She's noticing all the little quirks (little cracks and bumps in the walls, etc) and continually asking when I'm going to fix them. Yesterday when I got home from work, she was hungry for my attention and calling out "Papa! Papa!" about every 15 seconds or so. And, like I said, I was feeling depleted and discouraged. I tried my best, but felt that I had so little to give. And so little patience! At best, I wasn't engaging Piper; at worst, I was impatient and dismissive.

Some prescriptions needed to be picked up at Walgreens, so Hannah suggested I run out and get them while she got pjs on the kids (thanks babe). When I got back we settled into our "regular" routine of Hannah nursing Watts and putting him to bed and me reading and singing to Piper.

She's in bed with me sitting on the floor beside her, and after a few books I say to her: "Papa was impatient a lot tonight, huh?".

And Piper says, "About what?".

"About a lot of things. I'm really sorry for being impatient with you and not listening to you. Will you forgive me?"

"Of course!" she says, and gives me a hug.

Then she rolls onto her side, ready for songs, and I notice that she's wearing a shirt from the Ronald McDonald house, where she has spent weeks living over the course of this summer while we've been caring for Watts in the hospital. This is a picture of grace, I'm thinking. This little one is resilient and wonderfully forgetful. She holds no record of wrongs. She's always trusting, hoping, and persevering, and she brought her Papa to tears with the strength of her little heart. My, what a gift– very thankful.

Today.

Messy kitchen. Steroid crazy baby. Three hour clinic wait. Front porch sitting. Sleepless night (every night).

I wrote a longer post but it disappeared so that's a speedy recap. We are heading into a few days where he'll be off of steroids and we are excited and hopeful that we'll see old Watts, our jolly little guy, reappear.