Gratitude.

Piper is on the mend and has been fever-free for five days. She still has a pesky cough and runny nose, but we are so thankful that the flu was brief.

Watts, mercifully, seems to be in the clear from getting the flu. He has been having some diarrhea as well as diaper rash due to the combination of Tamiflu and his weekend antibiotic, but has otherwise been happy and wild and thrilled to be home. I went to check his counts locally yesterday and his ANC is currently zero which makes him severely neutropenic and incredibly susceptible to infections. His low counts are expected after his hospital stay and he will be getting neupogen shots at home until his counts recover. Until then, we are holed up at home and praying for no infections or viruses.

Lately I have been feeling a little like the wandering Israelites, gripping in the wilderness over the monotony of manna. Being cooped up with two little ones for days on end makes me feel like a crazy person sometimes and there have been moments where my heart has been less than grateful for our current situation. The Lord is patient with my fickle heart and when I step back with a little perspective, I am overwhelmed with thankfulness.

We just made it through a bout with the flu WITHOUT WATTS GETTING IT!

We are home. Period.

I have the privilege to stay home with my children while Michael works...

which is SO necessary during this season. I know not everyone has this ability.

Watts is still in remission and doing great.

My marriage is surviving this cancer hurricane... 

although I wish I could have a month away with my man, 

even in the midst of it, I love him SO much more than I did 8 months ago.

The Lord's faithfulness and goodness to us daily... He has never left or forsaken us.

And to end, I read this hymn verse this morning and am loving it:

Crown Him the Son of God, before the worlds began,

And ye who tread where He hath trod, crown Him the Son of Man;

Who every grief hath known that wrings the human breast,

And takes and bears them for His own, that all in Him may rest.

(Crown Him with Many Crowns, Matthew Bridges)

Home.

Watts literally led the way out of our room this afternoon! We are glad to be home.

Last day.

4 days down, 1 to go. Watts is still symptom-free and we think he might be in the clear from getting the flu. Piper is already on the mend and has been fever-free through the night, thanks to the flu shot, Tamiflu, and the prayers of many.

Watts has done remarkably well this stay and has been in good spirits most of the time, despite being shackled to the IV pole 24/7. He is probably going to go crazy once we get home and he can roam free. We can't wait!

 Thank you for the prayers, texts, visits, and encouragement! We are grateful.

Dang flu.

We found out today that Piper has the flu. It is a mild form of it (thanks to the flu shot she had months ago) but she started on Tamiflu today because of Watts. Our hope is that by the time we go home on Monday evening, she will be on the mend...Watts counts will bottom out soon after we get home. As a preventative measure, our doctors here at Brenner have also started Watts on Tamiflu. So far, he seems fine.

Please pray for protection over Watts and speedy healing for sweet Piper. She is home with my mom and Michael and I hate that we can't be in two places at once!

Etopside stay so far.

As of this morning, Watts has two days of chemo and an IVIG transfusion under his belt. It has been interesting adjusting back to being in the hospital, this time with a very active, walking toddler. Goodness! Entertaining him, walking the halls, and even sleeping at night has gotten so much more complicated. Watts, thankfully, seems to be adjusting well and last night slept about 10x better than he did two nights ago...Benadryl that he gets for 24 hrs post-IVIG might have helped with that too.

Due to there being lots of babies up on 9th right now, we are in a non-pressurized room (a pressurized room has double doors and air only circulates out, clean air comes in to decrease infection risk) and can actually open our door to the hall and wave to nurses and other patient friends as they walk past. I think this is only the second time we've been in a room like this and it definitely helps for sanity.

Please pray for Watts as he has three chemo days remaining, patience for us, and protection from icky hospital germs. Piper was also awake last night not feeling well so pray that she is on the mend soon... in the meantime, she won't be able to come up to the hospital. EDITED TO ADD: Piper now has a fever so my mom is checking out of RMH and Michael is taking her to our pediatrician, which ironically is probably where she caught the bug in the first place (we went to check Watts counts last Wednesday... even though she was stroller-bound the whole time?!).

Pictures from our stay so far...

Half birthday.

The four of us had a little birthday party the other night to celebrate Watts turning a year and a half. He was mesmerized by the candles and loved us singing to him but wouldn't eat a bite of his cupcake. Funny boy. He preferred eating his normal bowl of orzo pasta with butter and parmesan cheese...we've moved on from peanut butter crackers and macaroni and cheese now.

Cancer has a way of making small things like half birthdays feel monumental and celebratory. The last 8 months since receiving Watts' diagnosis have been painful and unbelievably challenging, but there has also been intense beauty and sweetness in the midst of it all. . . almost more so because of what we were going through as a family. Just as it has turned most of life upside down, it seems to have also shifted the lens through which we look at life. Small things are worth celebrating. Today is worth living in fully. His grace truly is sufficient for today, His mercies new every morning. Too often I've lived with my eyes fixed on the next "big thing" coming up... and have missed the wonder of today.

Six months ago on Watts' first birthday, we had just been discharged from a methotrexate round of chemo and Watts was not feeling himself at all. He has come a long, long way since then. Praise Jesus.

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Watts made counts yesterday (1200 ANC with awesome platelets and hemoglobin) so we are heading to Brenner in a few hours for five days of inpatient treatment. He will be receiving the chemo drug etopside and cytoxan. Historically, this has been an easier drug on Watty's body but he does tend to stop eating. Please pray for protection over his little body from short-term (and long-term) side-effects, for the chemo to do its job, for an appetite, and for sleep.

Happy boy.

Watts just toddled into the kitchen chuckling to himself and holding an uncapped marker. Amused, I followed him back into the hallway and found an original “art piece” on my newly painted walls. I turned and asked him about it and he started to laugh-- a good, deep belly laugh that bent him over in the middle and made him have to stop to catch his breath after a few seconds. Any words of reprimand slipped away and we sat on the floor and laughed about markers on the wall and giggled as we scrubbed them clean.

Watts is doing so well. After almost eight months of having high dose chemo coursing through his body, Watts seems to be coming out of a fog and feeling more and more like himself. It as if we can now see, truly see him. His little personality, humor, and stubbornness have always been evident but have been masked by the strong drugs in his body. Time at home has helped too, I’m sure.

His body is getting stronger. He walks and runs and talks and sometimes eats really well. He squabbles with his sister like an old pro; stealing her toys, smacking her in the face, and getting into the middle of anything and everything she is playing with. [It is important to note that she does the same to him.] He is also tenderhearted and frequently goes to hold Piper’s hand or give her hugs if she is upset about something.

I am obsessed with this boy, to put it mildly. He is a delight to this family and I am so humbled and grateful to be his mother.

 **I feel compelled at the end of this encouraging post to ask for the prayers not to stop! Although we have finished the most intense part of treatment, this journey is far from over. Relapse most frequently occurs in the second year of treatment which Watts will be starting in about 10 weeks. We are so thankful for how well he is doing and so, so hopeful for his future, but at the same time we ask for continued prayers for our warrior boy.

Back on track.

This silly boy's counts recovered this week so we made a trip back to Brenner for IV MTX and his monthly synagis shots (to help prevent RSV during flu season). His appointment went well and he is gaining weight like a champ. We are starting back on 6mp (at-home chemo drug) today and will continue through this week. If he "makes counts," we will admit next Thursday for a 5-day stay.

 My goodness, I love this little guy!

Sweet truth.

But you, O Lord, are a shield about me, 

my glory, and the lifter of my head.

 I cried aloud to the Lord,

 and he answered me from his holy hill. 

I lay down and slept; 

I woke again, for the Lord sustained me. . .

Salvation belongs to the Lord; your blessing be on your people!

Psalm 3:3-6, 8

Low counts.

After having his ANC (absolute neutrophil count) hover around 3400 the last 4-5 weeks, yesterday we were surprised when it came back as 422. A drastic drop in a matter of a week, but nothing unusual for infants on 6mp (chemo drug). In fact, although I hate that he is now considered severely neutropenic and susceptible to a lot of possible infections (during flu season no less!), it is good to see that his WBC (white blood count) is being impacted by the chemo drug. If his WBC is getting hit hard, then hopefully so is any possible leukemia cells. We will just hunker down a bit more, mask up more frequently, and wash our hands more obsessively.

So, because his ANC is so low, we will be taking a week off of all treatment to give his bone marrow a chance to recover. No clinic, no IV MTX, no at-home chemo. It'll be the first week not going to Brenner in almost 8 months! We will recheck counts next Wednesday and restart back on treatment on Thursday if his ANC is higher than 500. 

In other news, Watts' hair is growing back. I surprisingly miss his bald head but also love the soft fuzz that is coming in all over. This hair will most likely fall out again during the next inpatient stay but who knows! The doctors and nurses joke that Watts must have great hair follicles, as evidenced by him holding onto his hair for so many months of intense treatment, so he might just hang on to it.

Hard to believe that this was his head about 7 months ago... just when we noticed him losing a little bit.

And now...

 

Okay, so maybe it is hard to see, but it is coming in... mostly blond with a few really dark patches.

If you think of Watts, please pray that he stays infection and virus-free, 

as well as the rest of us. Thank you!

Upside down.

Cancer has left its mark on me. Some days I'm not sure which way is up and which is down. Simple things feel complicated and I can't seem to remember to brush my teeth. Or check my email. Or switch the laundry. I cry sometimes for no apparent reason but the truth is, there are a million reasons.

7 months in. 12ish weeks from maintenance. The online Infant ALL support group that I am a part of is inundated lately with stories of relapses, mostly during the maintenance phase of treatment. The statistics support this. It is sobering to say the least. Watts looks good, IS good, but the reality that this journey is far from over is always present in my mind.

Where's the balance of recognizing and acknowledging the reality of the situation and not living in fear of what the next year might bring? I don't know. I am trying to learn how to do life again when all of life feels different, when the future is unknown. The future has never been known to me, but now I am living daily in the awareness of how fragile life really is... And how quickly all of life can be turned upside down.

Don't get me wrong, some days I am truly overwhelmed with gratitude for the smallest of things and outpatient life feels almost blissful, but other days, a lot of days lately, I trudge the muck and mire and make it to the end of the day by the skin of my teeth.

PTSD issues from the past 7 months? Possibly. Exhaustion? 100% yes. Trying to figure out how to return to "normal life" when nothing is normal? Confusing as all get out. 

The first bath.

The first bath, almost three days post surgery. He was excited and did some initial splashing, then he panicked and clung to me.

From a standing position, he grew more confidant.

Drinking from a little cup was a highlight.

We have never really let him practice with drinking from a cup due to fear of his hickman getting wet.

Big sister getting in helped him a lot too.

Now bath times are a favorite and we have to pull him out kicking and screaming.

What a crazy thing to have bath times feel like a luxury and a blessing. We've come a long way on this journey.

PS. The bruises are from him being a crazy toddler and running into everything plus they were showing up more due to him being extra pale (because his hemoglobin was low). 

PPS. Bandages are now off!

Oops. And transfusion.

Well, the last blog post from the 31st (not the thank you one) was accidentally posted so I'm sorry for the somewhat raw, unfinished post... I write a lot more than I actually post on here and most of it just sits as drafts forever, a place to dump thoughts and unfiltered feelings. I'm taking it down but If I ever finish it I'll repost it.

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We just started the IVIG transfusion and are getting labs rechecked because his hemoglobin level was extremely low. If they come back low again, we'll stay several more hours to get a blood transfusion. Convenient that we are already here though! 

UPDATED: hemoglobin came back the same (6.6, a 2 point drop from last week) so watts and I will stay for blood after the IVIG finishes. Long day.