More delays

Watts' numbers dropped pretty significantly overnight and he's running a low-grade fever so it looks like we probably will not go home tomorrow. He also had to get another blood transfusion and docs think he may be fighting off some sort of virus. They are not concerned about it, but also not ready to release us since Watts would be very vulnerable to further infection. We are disappointed, but thankful that Watts still seems happy and comfortable. So much waiting!

Can a mother forget?

Food for my soul this morning... very worth the listen:

Can a Mother Forget?

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No word on labs yet this morning, so more waiting. 

It's quiet here on the 9th today, though, and Watts is passed out in my arms... All is well.

Staying put.

ANC dropped so we'll be staying put today and most likely tomorrow. The doctors are saying that they want the ANC to be around 200, I think. Watts' count was 94 yesterday, today it dropped to 64. The doctors aren't at all worried; platelets and hemoglobin are climbing, so it is just a waiting game till the ANC starts to come up.

Day 34 hospital stay, 32 of Induction...at least I think so.

Piper

We don't have as many pictures of Piper since our hospital days started (mostly because she typically hates the camera) so here are a few from early May. They make me smile.

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Piper has said some of the funniest things lately...

Piper was making some funny "bull-frog" sounds after she woke up from her nap one day. When Michael asked where she learned how to do it, Piper responded "God learned me to do it!"

When we let Piper visit Watts in the ICU (from behind the glass door due to risk of germs) way back when, we explained to her that Watts was sleeping and had tubes in him to help him get better. She responded cheerfully, "Oh, that's not so bad!"

This morning she was jumping in place and announced that "when I jump, I grow!"

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Love this girl.

Waiting on numbers...

We're still doing well in Room 913. 

We're done with chemo for this phase (!) and simply waiting for the ANC to go up so we can go home. It could be tomorrow, it could be Monday, but it'll hopefully be soon.

We are so, so ready.

We'll be home for about a week before we'll come back to start the next phase.

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We bought a king size mattress on Craigslist (thanks for picking it up, Dad!) in preparation of co-sleeping with Watts. He has been needing us to sleep in his crib with him here in the hospital so having a king-size mattress will seem so luxurious. We just have to figure out how to fit it in our little house.

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We have a house showing tomorrow at 1pm. Hopefully she falls in love with our place and buys it immediately!

Smiles

Steroids done (for this phase) = Happy guy.

Grief and Battle

I can’t say that I never pictured myself going through this, this whole hellish cancer thing, because I think that it is every mother’s haunting fear. We’ve all had nightmares about our babies getting sick, about them fighting for their lives. Despite picturing myself going through it (my nightmares were much milder than the reality has been, btw), I still find myself waking up in shock that I am currently living it. My squishy, jolly, adorable little guy is hooked up to wires and tubes, as he sleeps off the trauma of getting his chemo shot (L-asparaginase). And the crazy part is,  none of that phases me anymore. We have spent the last 31 days in the hospital.

Oh my word.

I think a lot of people are concerned about how I am handling all of this... how I am doing, really doing.

I am tired, but, honestly, I am good. Not good in the sense that "everything's coming up roses," but good in the sense that daily I feel the Lord sustaining me, daily I feel the Lord knitting my little family together, and daily I see how He is growing me, changing me, breaking me into, honestly, a better, humbler, and more gentle woman.

People have asked about why I am not grieving more right now and I think it's because of a number of reasons.

1) We are over a month into this and are already adjusting to our new norm (talk about being immersed!). I still cry at times during quiet moments, but even those are fewer and far between. 

2) We are literally surrounded by sick, really sick kids all the time. Watts is a lot sicker than some but there are MANY who are sicker than him at any given time. Some even have the exact same diagnosis as Watts. It puts his leukemia journey (even scary Infant Leukemia) in perspective. 

3) Watts has leukemia and we are in battle against it right now. There is grief over the loss of the way we envisioned our life being like, grief over Watts' babyhood being spent in a hospital, and there is grief that there are a TON of questions in regards to the future... But it is a grieving what might have been, a grieving of having to let go of our plans and dreams for the next two years, and a grieving letting go of the facade that we can protect and control our kids. We ache that there is cancer in the world. It sucks. As does all broken things (sex trafficking, starving orphans, poverty). 

Long and short of it, I am grieving, processing, and feeling all of this, but I am sustained AND I am way more in battle-mode than grief-mode, because the battle is at hand! 

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I just learned on Facebook that an old childhood friend lost her 15 month old son unexpectedly yesterday. I feel deep racking sorrow for her and have images of our own ICU time flash through my head. What if we too had lost Watts? How close were we?

I know very little of true grief as I hold and nurse my son, chemo drugs coursing through his veins and, Lord willing, saving his little life. And I pray for my old childhood friend whose sorrow must be unbearable.

I just don't have words.

Day 30, I think

So, we're starting day 30 of our hospital stay. Day 27 of chemo. That's crazy. We are now the "easy room" on the floor, with medications decreasing (just chemo now, no more methadone, atavan, or morphine), and no infections. While we are so thankful for things to be stable and quiet, it also makes our days a lot longer, without the constant bustle of of doctors and nurses and various other people. The walls are starting to close in on us and we are so, so ready to go home.

So, not much going on here. We are simply waiting for counts to start climbing, hopefully in the next few days. When the #s get to a certain point, the doctors will send us home. We'll be on lock down there as the #s continue to (hopefully) rise and when they reach a satisfactory level, we'll be readmitted and start the next phase of chemo called Induction Intensification. Also, when they reach a certain #, they will do another bone marrow biopsy (aspirate?), which will show whether Watts is in remission or not.
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Sleep is hard to come by these days thanks to the steroids. Whoever has the hospital shift gets VERY little sleep. As in, last night I slept about 3 hours.

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Watts is eating up a storm (thanks to the steroids) and, in the last 48 hours started taking a bottle and STARTING BREASTFEEDING again! Wohoo!

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No news...just this brave boy

Laughs!

First laughs we've heard in about a month!

Excursion

Armed with anti-bacterial wipes and "hani-tizer," all four of us left the hospital room! On Friday night (once we knew the hospital had quieted down for the weekend), we took Watts to the rooftop playground to breathe some fresh air. He seemed very perplexed and clung to his papa but it was good for this mama's heart to have her family all together OUTSIDE of the hospital room.

Saturday update

 Wrote this this morning but am just now posting it...
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No news, which is good news. Watts was wide awake with Michael in the wee hours of the morning (steroid-induced insomnia) but is napping now and has an uneventful day planned.

Piper is at the Science Center with Aunt Liz, Michael is on a coffee run, and I am grumpy.

Nothing triggered it, I think that I am just weary of all of this. We've been in the hospital for close to a month and that is just a really long time. I'm tired of having my family sleep in different places, I'm tired of the wires and tubes on my baby, I'm tired of the hospital food, I'm tired of it all.

Sigh.

The clouds are dark and heavy outside the window, as I am. The clouds will lift, they always do, but at this moment I am gripped by the thought that this is not as it should be. This hospital filled with sick and dying babies, it is not as it should be. The orphaned newborn babies (in Syria?) stacked on trays from the news clip Michael showed me...Good Lord, this should not be so! Even in the midst of Watts' fight for his life, we daily see the pain (at times much, much greater than ours) of those around us, both in the hospital and on the news and in the lives of those around us. We live in a broken, pain-filled world that is truly not our home.

Today my heart is heavy and I grieve where this world is and cry out come quickly, Lord Jesus.

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Have read Psalm 42 every day for the last several days...

42 As a deer pants for flowing streams,

so pants my soul for you, O God.

2 My soul thirsts for God,

for the living God.

When shall I come and appear before God?

3 My tears have been my food

day and night,

while they say to me all the day long,

“Where is your God?”

4 These things I remember,

as I pour out my soul:

how I would go with the throng

and lead them in procession to the house of God

with glad shouts and songs of praise,

a multitude keeping festival.

5 Why are you cast down, O my soul,

and why are you in turmoil within me?

Hope in God; for I shall again praise him,

my salvation 6 and my God.

My soul is cast down within me;

therefore I remember you

from the land of Jordan and of Hermon,

from Mount Mizar.

7 Deep calls to deep

at the roar of your waterfalls;

all your breakers and your waves

have gone over me.

8 By day the Lord commands his steadfast love,

and at night his song is with me,

a prayer to the God of my life.

9 I say to God, my rock:

“Why have you forgotten me?

Why do I go mourning

because of the oppression of the enemy?”

10 As with a deadly wound in my bones,

my adversaries taunt me,

while they say to me all the day long,

“Where is your God?”

11 Why are you cast down, O my soul,

and why are you in turmoil within me?

Hope in God; for I shall again praise him,

my salvation and my God.

Friday

 

Just hanging tight in 913. No big news (which is how we like it), but we had a good night's sleep and a few smiles today.

Abide with Me

Watts got sick on a Saturday. The next morning I led music at Hope Chapel, then rushed home when Hannah sent me a text saying that Watts still wasn't better. We went to the emergency room that afternoon, and so the story began. That Sunday morning at Hope, we sang a hymn called Abide with Me, one that has become a personal favorite and, I think, a new favorite of our church community. Like other songs that we've talked about on the blog, these words give voice to some of what we've been feeling through the hard weeks in the hospital. We sang them with the saints onthat Sunday before we knew about the cancer, and we've sung them another 50 times in our hospital room; laying in the crib with Watts or pacing the room helping him to fall asleep. Precious words like these...

"When other helpers fail and comforts flee
...help of the helpless, abide with me".

"Who, like Thyself, my guide and stay can be? 
Through cloud and sunshine, abide with me". 

Yes, Lord.

A few days ago, Hannah and I listened to a talk from Tim Keller about suffering, and in it he proposes the idea that one of the best ways of dealing with suffering is remembering Jesus, son of God, on the cross. This, he says, cannot explain the suffering (by causing it to "make sense"), but it does give us this assurance: our suffering is not because God does not love us. By giving up his son, God removed that option. I think the writer of this song agreed:

"Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies." Amen.

You can download the recording of the version we love for free here.

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, abide with me.

Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, though I oft left Thee,
On to the close, O Lord, abide with me.

I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
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, tears lose their bitterness.
Where is thy sting, death? Where, grave, thy victory?
I triumph still, abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

Thursday morning

Oh chemo, you are a fickle one. I love and hate you with everything in me. One day you are so mild, and the next day you are a raging storm overtaking what seems like every fiber of my son.

The past day or so has been more difficult up here in Room 913. Watts had a hard time sleeping two nights ago and yesterday seemed like it was filled with diarrhea, screaming, (mild) reactions to meds, and a very weary grumpy mama. He slept last night, though, and is currently napping so it seems like he is feeling a lot better overall.

It has been a couple days since Watts has seemed "like himself" and we are definitely missing him. Smiles are very hard to come by, even for Piper's antics, and he doesn't seem to have much energy to pull-up on things, play, etc. It is to be expected (with all the chemo drugs and his counts being what they are), but we are still eager for him to perk back up and play again. He ended up having a platelet transfusion yesterday but that too was to be expected.

So, today we are praying for a quieter day and a calm, comfortable baby.

Happy 11 month birthday, Gideon Watts! We love you more than you'll ever know.

Here are 11 pictures to remember your 11 months...though not necessarily in order.

 

Rambles...

I've been thinking about happiness a lot these days. It's a funny thing, happiness is, because you imagine that your circumstances need to be just so, or your babies need to not be sick, or you need to not be living in a hospital room in order to experience said happiness. I can now attest that that is not true. Happiness has been showing up in the little moments, even back in the bleakest days in the ICU. A hug from a husband, a joke from a toddler, a good cup of coffee, a stable day medically, a sunset out of the hospital window, a grin from a sick baby... Those moments come and they are so sweet. Perhaps even sweeter because I am going through a valley. Happiness might not be the right word, though...its probably better described as joy.

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I miss my husband a lot. Like a lot, a lot. I miss having conversations that don't revolve around decision-making, I miss going out to dinner just with him, I miss sleeping in the same bed. We are two people fighting for our kiddos; advocating, comforting, pursuing, and loving the crap out of them, and there just isn't extra hours in the day for each other. THIS WILL NOT ALWAYS BE SO, of that, I am sure. But, goodness, it is really hard.

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Hospital staples: coffee, granola bars, chapstick (duh!), antibacterial wipes, non-hospital food, Danskos, and a pillow from home. And more coffee.

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Tuesday morning

 

Watts' has had a cranky 18 hours or so. Because his numbers have also dropped some, they are giving him a blood transfusion today. This isn't surprising or even disappointing since we've been told to expect them periodically. We are hoping that he perks back up afterwards and is back to playing and laughing at us.

Here's a short description of why he needs blood transfusions:

Blood transfusion using cells donated by healthy volunteers can help replace red cells, platelets and other blood components. Some people with leukemia, lymphoma, myeloma and other blood diseases or disorders such as hereditary anemias and aplastic anemia need periodic blood transfusions for several reasons:

• The disease process itself can sometimes interfere with the normal production of red cells, white cells and platelets in the bone marrow. For example, almost all patients with leukemia (which primarily affects the marrow and blood) require some transfusions during their care.
• Many drugs used for chemotherapy can temporarily impair blood cell production in the marrow and depress immune system functions.
• Stem cell transplantation patients receive high doses of chemotherapy, which depletes stores of normal blood cells. 
• *Info from the Leukemia & Lymphoma Society website 

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He did get to work with the OT on the floor this morning. It was his first time really getting to try and crawl and pull up on things outside of his crib. He was weak (and irritable) but also very determined to crawl and grab the toys that the OT would set just out of reach. Way to go, Watts!

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A moment in time:  I'm sipping on coffee that was just delivered to us (THANK YOU!), Michael is in the crib with Watts, Piper is on a play date with Gramma, and Watts is napping while receiving a blood transfusion. Crazy how life changes... and now this is our new norm!

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And I'll end with this picture... of our hilarious, resilient, precious first born.

Sibling love

This is a mesh bag, btw.

Our boy

On bittersweet encounters

We've seen this play out all to often over the past few weeks. An elevator ride, a wait to be "buzzed in" to our wing, a few moments of silence with a stranger who, as we both know, has some major life circumstance in common. We both have (or know) very sick children who we love a great deal, and mostly we don't say it out loud. Sometimes, though, silence is broken and the heavy air of sadness and weariness is pushed into. A connection is made and it always feels bittersweet. There is an understanding that can't be replicated, even by the most sincere, empathetic hearts of friends and family. They are walking, or have walked, the same paths as us. They know the feelings of parenting a sick child, and it feels good to be understood, even if for a 30 second exchange. But then there is the reality that we both have sick children. Really sick children. Some of our children won't be victors over their illnesses, and we all know it.

Tonight I met a sweet family in the lobby of our floor whose son had been treated at Brenner a number of years ago. They shared with me that he is in heaven now. They listened to my story and asked if they could join us in praying for Watts, and encouraged me to have hope because even in this darkness, we can remember that death has lost its sting because of Jesus. Amen. It's comforting to hear from them. And it's hard, because it makes the reality of cancer feel more real.

It's just one example of these small connections (if there is such a thing as a small connection) that seem to be happening all over the place these days (from the hallway to the internet). It's the blessing and burden of connection, and just one more aspect of this new life that we're trying to figure out.

Monday update

Watts is "getting better" every day. The infection is making its way from his little body and the drug withdrawal symptoms are diminishing. More and more he seems like our son, our little guy who disappeared with the high fever and low blood counts and days and days of sedation.

We are loving having him back!

He's laughing, smiling, eating some table food, and clawing our faces just like the good ole days. He has even started pulling up on the side of his crib. His legs are weak, but he is determined and has some mad upper body strength.

I feel like we are finally reaching the point where we are dealing with the cancer primarily (and the chemo side effects, etc.) instead of having almost all of our attention focused on the infection and the drug withdrawal stuff. And, so far, chemo hasn't been that bad side-effects-wise...or maybe it just doesn't seem that bad given what we've come through. He's had some throwing up, diarrhea, irritability, and some sleepless nights (like last night, ugh), but overall he seems to take those in stride.

Here's evidence...

More chemo today, as usual, but numbers are still holding strong so no blood transfusion.

A typical (or atypical) day

So, this was our day from Friday, June 14th, as best as I can remember it... today will be totally different, but the same.

Throughout the night (Thursday), Watts is woken up by our nurses administering meds and taking vitals, and so are we, of course. I'm sleeping on the couch and Michael is on a twin blow-up mattress on the floor. We take turns crawling into Watts' crib to comfort him and twice we change his diaper (trying to avoid the dreaded "chemo diaper rash"). We wake up around 6am after a very broken night of sleep, Watts snoozes till 6:30am. I pump.

Nurses are in and out, taking vitals, drawing blood for labs, and administering meds. Our awesome med student, Chris, and resident, Anna, pop in and check on our night.

Lauren brings us amazing coffee. I thank Jesus for coffee.

The PT/OT comes by and evaluates Watts.

I pump.

Gigi (my mom) brings Piper up for a visit. Piper hangs out for awhile in the room before Michael takes her to an art class down the hall with Lauren. They make a hilarious jumping frog craft.

The nutritionist comes and meets with me in regards to Watts' caloric needs. We make a plan to last us through the weekend.

Watts throws up on Michael and in the course of an hour has multiple diarrhea diapers. They run tests on the stool [which later, thankfully, comes back as negative for some infection kids get when they're on a lot of antibiotics].

Gigi takes Piper on an outing.

I pump.

Dr Russell rounds with resident and students. We talk for awhile about Watts' progress. Dr Russell seems encouraged and so are we.

Nurse is in and out administering meds, starting feeds, etc.

I go back to the Ronald McDonald House at lunchtime and meet up with Piper and Gigi. I spend some time with them, then head back to hospital while Piper naps.

Watts is laughing and playing when I get back and has taken a few sips out of a sippy cup!

I pump.

Michael gets Watts to nap, he then does some work and I try to come up with a plan/routine for Piper for the next week after Gigi leaves.

We say goodbye to Chris, our medical student, who is heading off to Nicaragua. He's been with us since the beginning (was even in the room when we first learned Watts' diagnosis) so its very sad to see him go.

I pump.

More diarrhea diapers.

Gigi texts that Piper is up from nap and is spending time with Gramma and Granddad (Michael's parents).

Nurse is in and out administering meds, checking vitals, starting feed, etc.

Dr Russell pops in to talk to us and check in on Watts.

I pump.

Speech pathologist comes by to talk about Watts' swallowing.

Gramma and Granddad, Abigail and JC, and Piper all bring dinner to the lobby. Michael and I tag-team going out to eat and spend time with them. 

Nurse is in and out administering meds, checking vitals, starting feed, etc.

The extended family leaves and the four of us (Watts, Piper, Michael, and me) spend time in the room till 8pm.

I pump.

Brandon Dent's sister (who works on the 8th floor) stops by to check on us. So thoughtful!

Michael takes Piper back to the RM house for bath and bedtime and he spends the night too (only the second time that he has not slept in the hospital since all of this began).

Nurse is in and out administering meds, checking vitals, starting feed, etc.

Watts and I hang out until 10pm when I start to see signs that he is tired. I lay with him in his crib until he falls asleep.

I pump.

I fall into "bed" and go to sleep... before the midnight meds have to be administered and everything starts over again.

*Up until last night, Michael and I have both been sleeping in the hospital. Now that Watts is through the worst of his fentanyl withdrawal, we are going to tag-team nights. Oh, and Michael was a rock star and slept all but 1 night in the ICU while Watts was sedated...with the lights on and people rushing in and out the whole night. 

Phase One of Treatment: Induction

We had a good morning today. Watts seems to be returning to his usual self as the methadone is weaned from his system. He is smiling more, playing a bit, and has started to put things in his mouth (toys, food, water). It's encouraging.

The following is info about our treatment plans for Watts, if anyone is interested in what the next couple of years are going to look like for him (and us).

There is a standard treatment plan for Watts' type of leukemia (infant acute lymphoblastic leukemia or ALL), which pretty much maps out the next 104 weeks of therapy. There is the possibility that he will have extended treatment, because boys tend to respond less favorably to chemo than girls, but we don't know that for sure right now.

Treatment for Watts' ALL is separated into six "phases" or "blocks".

Phase 1: Induction Therapy (weeks 1-5)

Phase 2:Induction intensification (weeks 6-9)

Phase 3: Re-Induction (weeks 10-12)

Phase 4: Consolidation (weeks 13-19)

Phase 5: Continuation I (weeks 20-41)

Phase 6: Continuation II (weeks 42-104)
 
Phase 1 is scheduled to last 5 weeks, or until the leukemia is in remission. Watts began the Induction Phase on May 30th, so he's already on day 16. The goal is to kill all the leukemia cells in the blood and bone marrow. This puts the leukemia into remission.

Our specific prayer item right now (in terms of treatment) is to see a 0-count when Watts' blood is tested for leukemia cells on or around July 3. So, remission on July 3rd (also our 9th wedding anniversary!).


This is the crazy chart that specifies exactly what drugs and how much he gets during Induction:

Similar to treatment of many other cancers, Watts is receiving chemotherapy treatment. Again, from the National Cancer Institute website:

Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream, and can reach cancer cells throughout the body (systemic chemotherapy).

This is how Watts is currently receiving treatment.
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Last week we learned more about Watts' specific subgroup of ALL and his assignment to a "risk group". Some info from Wake Forest University Health Sciences:

Infants with ALL can be classified into 1 of 3 risk groups. The term "risk" refers to the chance of the cancer coming back during or after treatment. The assignment of risk is basde on the infant's age at diagnosis and the genetics of the leukemia cells. The genetics of infant ALL can be classified as either "MLL-G" or "MLL-R"... about 75% of infants are found to be MLL-R and have a higher risk of the cancer coming back than those infants that are MLL-G.

High Risk classification is for infants younger than 90 days, so Watts would fall into either Standard Risk or Intermediate Risk. This depends on the genetic testing and whether the results come back as "MLL-G" or "MLL-R". Those tests were taken immediately after diagnosis and Watts' tests came back as "MLL-G", putting him in the Standard Risk group. Obviously we were very relieved and thankful.

As we move into the different phases of treatment, we'll do a post detailing the plan. As always, thank you for the support, prayers, notes, gifts, emails, texts, phone calls...