Fears and treatment and beauty.

Watts woke up early this morning in a decent mood but something changed by the time we sat down to a breakfast of oatmeal and a story from the Jesus Storybook Bible. He began to scream and wail and smack us and seemed inconsolable; Nothing seemed to calm him down and we weren't sure what had triggered him or if he was in pain. Within seconds the morning shifted and suddenly I'm analyzing his every move and thinking back to when his last labs were and what medication he just took.

By mid-morning he was fine and we are left to wonder whether he was experiencing side-effects from the drugs he takes on a daily basis or whether he is throwing a normal two-year-old tantrum or whether something else is brewing in his little body.

By late morning the kids and I headed to some trails and spent some time "hiking" and exploring nature on this gorgeous fall day. We picnicked under trees of yellow and red, and the kids were adorable and hilarious and got along beautifully. I laid on the blanket underneath the blue skies and fall colors as Piper and Watts played next to me, and I forgot all about the morning angst and found myself thinking that life probably doesn't get much than these moments. Right then and there. Children's laughter out in the woods, full bellies, no where to be... My heart seemed to struggle to soak it all in... it was one of those moments you just want to bottle up and store away forever.

Those two snapshots from our day today (and it's just now 1:30pm) seem to capture the kind of bizarre and painful and wonderful and overwhelming days that I'm living.

We are still deep in the throes of cancer treatment. This phase of treatment is significantly easier on our boy -most of the time- but there are still some months where we spend over half of it "in the trenches" with side effects from steroids. But more than that even, it seems that Michael and I have entered the emotional battlefield of cancer. While Watts is already 18 months (!!) into treatment, for a huge chunk of that time the treatment was so intense that we spent most of our time in go-mode. There was little time for worries beyond the day that was before us. Now we have a lot more space doing outpatient treatment [which has been so needed and wonderful for our family]... but with the space comes a lot of fears and questions and anxiety. It is difficult to not question every tantrum, every bite he refuses to eat, every sleepless night. We want to live fully present in each day and treat it as a gift, but we are also the eyes and the ears that are on Watts on a daily basis; when before, during our inpatient days, we had the comfort of having doctors and nurses nearby at all times. It's a tricky line to try and walk.

Thankfully, in the very midst of the wrestling with fears and anxiety and the constant watching, there is tremendous joy. There are hours and days, like today, where I simply can hardly believe how well Watts is doing and how happy and healthy he seems to be. I feel as if my blessings are abundant and overflowing.

So that's a bit of where we are right now... Watts is doing great but still needs continuous prayers as he undergoes daily treatment. Michael and I are doing great but still need prayers as we wrestle through an array of emotions and fears and as we try to recover a bit from living in an ongoing state of exhaustion. Piper is simply great. She is pure delight and joy and we are all a bit crazy about her.

Now I'm off to take advantage of a few minutes of overlapping nap/rest time...
Thank you for reading and praying and loving on our family. We are blessed by the support and encouragement.

Another month.

Watts and I will be heading to Brenner in the morning for another routine appointment, chemo, lab check, and maybe some art therapy. He will also be starting back on steroids for the week.

Thanks for the prayers for our little superhero!

A difference of a year.

 Last year at this time, we were celebrating Watts having the strength to push a chair across the room. He was in the throes of intense treatment and lots of hospital stays, but, amazingly, every time we got him home he seemed to be bound and determined not to get too far behind developmentally. We were (and are) so amazed by this boy.

These days, we have to hustle to keep up with this boy. What a difference a year makes!

Day by day, we are settling into a new rhythm, a new normal for our little family. Watts continues to do well in maintenance; we are now a couple months into this stage of treatment and have about 8-9 months left. Some praises: 1) His bi-weekly blood checks have all shown no sign of cancer. 2) His appetite is remaining fairly consistent (more importantly, the doctors are happy with his weight) and he is taking his daily oral chemo like a champ. 3) He seems to be on track developmentally and is talking up a storm. 4) We've also had a couple months with no ER visits!

Although life is not "back to normal" and we still have challenging days, I'm finding that there is more space these days to try and forget about cancer and treatment and just let Watts play and be a crazy little boy. And I find myself standing back and watching him in amazement.

Prayer requests would be: Sleep (still an issue thanks to steroid week each month), continued good blood checks, for Watts to stay virus and infection-free this flu and cold season, and for easier steroid rounds. This past steroid round was rough on our little man. Thank you for your continued prayers!

His love.

The Lord and His love has pursued me. Even in the darkest moments of the last year when there seemed to be no hope, I knew that I was not alone. As I ran after the stretcher carrying my son to the waiting ambulance on that dreadful day last May, the words "He makes all things new, He makes all things new," ran continuously through my mind. I didn't know how He was going to make things new; I didn't know if He was going to spare my son's life or instead eternally spare him from pain and sickness and brokenness by calling him home, but I knew He was good and He was present. It's hard for me to believe it now looking back, but even in the darkest moments in the Brenner PICU, I knew that He was there. He was there holding me up through the long nights of waiting; He was there in the hands of the skilled doctors and nurses; He was there in the prayers of hundreds, possibly thousands rallying for my son; He was there in the courage and the tears of my husband; He was there.

His love sustained me. The Gospel truths breathed life into my weary soul: He is good. He loves me. He loves me so much He gave His son for me. I can rest in His care...come what may. In the last fourteen months, He has whispered over me when my heart has felt discouraged and when all seemed too exhausting and bleak to continue. He has strengthened me when I felt I couldn't continue on my own. Even in these current days of grateful living --sandwiched between wrestling with fears and finding a new normal-- He has been patient and gentle with my struggling heart...

He loves me. Oh, how He loves me.

Tube-free!

Watts is tube free, hopefully for forever! He has been eating like a champ and taking his medications by mouth for a couple of weeks, so we pulled his NG tube out on Sunday night. We were hardly even noticing the NG tube anymore because he has had it for so long, but what a joy it is to see him without it!

In a couple days, Watts will have completed fifteen months of treatment and will have nine more months to go. Day by day, step by step, bite by bite, he is making progress! 

IVIG

Watts' lumbar puncture went well on Monday and all his labs (except for IGG level) looked good. Due to his low IGG level, Watts and I are back at Brenner for the day for an IVIG transfusion. We got here super early to get Watts' port accessed and to get in a room, and now we are killing time while we wait for the IVIG order to arrive. We've roamed the halls, watched for helicopters, ridden on the go-cart, and talked to our sweet nurses that we've missed so much. While it has been wonderful to be in maintenance and do all outpatient treatment, I've missed all the staff on the inpatient side and, in a weird way, I've missed the familiarity of the world that we lived in for the last year. But, don't get me wrong, it'll be good to leave in six hours ;)

I am so thankful for this boy and how well he's responded to treatment. And, my goodness, he's come a long, long way!

Routine sedation.

Watts and I are heading off to Brenner for a routine lumbar puncture and chemo. Although we've been through this a number of times, prayers are always appreciated!

Short update & Fears.

Watts is doing well. Well, at the moment he is on day four of steroids for the month and is about to crawl out of his skin, but that is to be expected. Overall, he seems to be thriving. We have been able to make some trips this summer, have some fun birthday celebrations, and done all kinds of normal family things. It has been such a gift and we are trying our best to savor these days. Praise God from whom all blessings flow.

I haven't been posting as much to this blog or to Facebook as I try to be fully present with Piper and Watts (no more long hospital days to sit and write anymore), but if you would like more frequent pictures, feel free to follow me on Instagram (hannahvanpatter). I've been a little bit more consistent on there since I can post with just a couple taps of some buttons.

There's no real transition for the next part of this post, but below is some of what my heart has struggling with lately:

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I've been wrestling with fears hard-core the last couple of months. The first year was such an intense time in treatment that there was very little time to worry about anything in the future. We were in the trenches. I lived one day at a time with very little energy left over to give to any thoughts about the future or even next week-- One foot in front of the other, one moment at a time, or so it seemed. Watts' health and comfort was paramount, loving on Piper came next, and then everything else got lumped together for whatever remnants of energy might be left. And there rarely was much.

It is different now. We have a lot more space and a lot of time of just being home. We play cars, splash in the kiddie pool, wash laundry, cook some chicken nuggets, and do all kinds of slow, mundane, and beautifully simple kinds of things. Some days are so, so good. Thankfulness seems to blanket those days and moments with my kids seem precious beyond words. It is truly a gift to be able to be home with them, to watch each and every smile, and to make up for lost time spent in the hospital.

But to be entirely honest and vulnerable, there are harder days too. There are days when I seem to sink into a funk that is difficult to come out of. I cry a lot. My heart feels heavy on those days and my mind is filled with so many thoughts, none of which feel coherent. I do know that there is a good deal of grief and heaviness (and some horrid flashbacks) from this past year, and there is also a good deal of anxiety and fear about the future. There are so many questions and unknowns about the days ahead... even buying Watts shoes for next year can send me spiraling into dark places (or have me crying tears of joy that I am still buying shoes for two children). I'm caught in the middle of my own crossfire with all of my grief from the past year and yucky fears about the years to come with a good measure of thankfulness and joy tossed in just to make things really confusing.

This was not the story I would have picked for family. It is more broken and painful than I would have ever liked. And what about the end? Is the cancer piece of our family's story over? There are no easy answers. There is no fast-forwarding through the next six years to see the outcome of our story (just as there is no fast-forwarding through the grief process of the last year). This cancer journey has taught us that life should be lived to the fullest today, so by golly, I will not live the next six years just waiting in dread to see what tomorrow will bring.

My heart right now is a bit of a mess and I'm trying to be okay with that [I'm also seeing a counselor to help remind me that its okay to be where I am and to help me process through things.] I am trying to navigate through the tricky waters of honoring my emotions and grieving the brokenness of the past year while also figuring out how to rise above the funk so I don't miss out on today. Whew! Confusing stuff. I think that if I could have about a month to slip away somewhere and recover and process the past fourteen months, I could emerge with so much more clarity, strength, and hope than I have normally on my funk days. Since that is not possible, I will steal moments here and there and trust that, just as the Lord has been faithful and sustaining on this cancer journey, He will be faithful and sustaining as I grapple through hard heart issues.

 I can't get enough of this song these days:

Reason To Sing, All Sons and Daughters

When the pieces seem to shatter
To gather off the floor
And all that seems to matter
Is that I don't feel you anymore
No I don't feel you anymore

I need a reason to sing
I need a reason to sing
I need to know that You're still holding
The whole world in Your hands
I need a reason to sing
When I'm overcome by fear
And I hate everything I know
If this waiting lasts forever
I'm afraid I might let go
I'm afraid I might let go

Will there be a victory?
Will You sing it over me now?

Your peace is the melody
You sing it over me now
Oh Lord
Will there be a victory?
Will You sing it over me now
Oh Lord

Your peace is the melody
You sing it over me now
I need a reason to sing
I need a reason to sing
I need to know that You're still holding
The whole world in Your hands
That is a reason to sing

Listen to it here.

PS. This probably goes without saying but another tricky part of processing the last 14 months is that there is a good deal of guilt for not staying in a constant place of thankfulness. My son is alive and well today...so many other cancer families cannot say the same. So I write all of the above with much trepidation and have, consequently, had this post sitting as a draft for quite a long time. I want to be honest about the ups and downs of this journey but I also do not want to rub salt in the wounds of grieving parents who would delight in being in my shoes.

Birthday girl.

Happy birthday Piper girl. We adore you and your whimsical, creative, beautiful self.

By God's grace and the resilience and joy He has given you, 

you have bloomed this past year... despite it all. 

You are tender-hearted, inquisitive, and filled with stories and questions.

You are kind and compassionate to others and I have seen you 

intentionally move towards those that appear different than yourself.

 

You are so silly and love to laugh. We begin and end most of 

our days with smiles and many, many, many times it is because of you.

 

When I think back to the last year and your little two year old self when this all began, 

my eyes fill with tears. 

You have been so brave, sweet girl. So very brave. 

I couldn't be more proud of you.

Today we celebrate and thank God for you...

Your life is a gift and a blessing to your mama and papa and brother 

and to all those that know you.

2nd birthday.

 Happy 2nd birthday Gideon Watts! You, my son, are a crazy-courageous spitfire of a fighter and stronger than I could have ever imagined--- a Warrior-Boy indeed. You are indiscriminate with your smiles and fist-bumping friendly and have brought great joy and sweet laughter to this little family, even on some very dark days in the past year. In a poor attempt to sum you up, you are strong-willed and fearlessly adventurous, hilarious and expressive, kind and compassionate and a lover of all people, a huge fan of your big sister, and a cuddle-bug with your papa and mama. You are a force to be reckoned with. The past two years have been such a gift and I would live them over and over again just to know you, Watts.

All kinds of normal things.

Muffins at Spring Garden Bakery after an early morning walk.

Front porch popcorn snack.

Best part of the day = when Papa comes home from work.

Tent playtime.

Early morning walks.

Clinic.

We had a clinic day yesterday for IV chemo but Watts did not have a lumbar puncture like I wrote a couple days ago (I was getting ahead of myself on his protocal). Watts did great at his appointment and seems to love going to the hospital, as does Piper. Yesterday they did art at the art table, music with Mr Collin, and of course got to see beloved nurses, doctors, and staff. They loved it all! 

We are now on Day 2 of steroids. He had some trouble sleeping last night and some crazy irritability and rage this afternoon, but so far he has kept his appetite and his sense of humor:) We are hoping and praying for an easy week for our boy because we have some fun plans this weekend.

Thanks for keeping up with us as we truck along in maintenance!

A song for our 10th Anniversary

 

Thanks to Charlie Swing for playing pedal steel and Edd Kerr for engineering and mixing.

These days.

Well, that was an unintentionally long blog break... I wrote that I would write more when I felt like I had caught my breath, but even when things had seemed to settle back down after Watts' fever, I seemed to have lost my desire to write. I need to write these things down for memory-sake, though, so plug along I will.

Twins!

Watts is doing great. He seems to be thriving in maintenance and we frequently get comments from folks who haven't seen him in awhile about just how good he looks. Praise God. To say that we are thankful for this boy and these good days, just doesn't seem sufficient. Today as I nursed and rocked Watts to sleep [Yes, I am still nursing... yes, I am still rocking an almost 2 yr old to sleep... yes, it takes almost an hour.], I couldn't help but look down at my boy of 23 months and think about what he has gone through in his short life. It is almost hard to wrap my head around.

After the fever scare and the round of strong antibiotics, Watts has bounced back to normal and it seems as if the antibiotics has also knocked out Watts' "chronic" cough and nasal discharge. Wohoo! For the first time in months and months, Watts is not hacking and coughing throughout the day. Coincidentally, he also seems to be getting his appetite back which leads us to wonder if the cough and nasal drainage might have been causing the nausea and not the 6-mp (chemo drug). Only time will tell, I guess.

Protocal-wise, we have started our third week of 6-mp for this round. Next Monday we will go back to Brenner for a lumbar puncture with intrathecal therapy, an IV push of Vincristine, and we will start another week of the dreaded steroids. We are hoping that this steroid round is an easier one on our boy than last one.

Thank you for your continued prayers for our Warrior-Boy. 

PS. Today is Michael's and my 10 year anniversary! Today we celebrate all the Lord has done in our lives the last ten years and also remember our 9th anniversary when we were surprised by getting to go home for the first time post-diagnosis. That still goes down in the books as the best anniversary gift ever!

Fever update.

Our Warrior-Boy is doing well. He is fever-free and seems almost back to his normal self. The doctors have no idea what happened to cause the high fever, but it seems the antibiotic worked and whatever it was is now gone.

After I catch my breath a bit, I will try to write a bit more.

Thank you all for you prayers and well-wishes.

Fever and ER Visit

After a hard round of steroids, we were hoping that we would have a few easy weeks before steroids start over again. Not so. Cancer and the intensity of treatment continues to keep us on our toes. Watts woke up from his nap yesterday with a 104 temperature and lethargic behavior. We immediately took him to the Brenner Emergency Dept. where he had in a fever of 105.

We are learning that Maintenance is a different ballgame than the past year of treatment. Every single time we've been to the ED before, Watts has been neutropenic and even a 100.5 is an automatic admission and days of antibiotics (neutropenia suppresses fevers so 100.5 could be equal to a much, much higher temperature). Watts' ANC was 2200 yesterday so we were not an automatic admit...even with how high his temperature was. They drew a CBC, got blood cultures, took a (traumatic) chest xray, and gave him fluids and a round of antibiotics that will last for 48 hrs. [If he was neutropenic, he would have had to have a different antibiotic that would have been given every 6 hours...hence part of the reason for auto. admit.] They also gave him Tylenol and watched him for a couple hours. It dropped his fever down and, after a couple hours and some fluid, his fast heart rate slowed down. We left the ED around 9:30pm last night and are now home to monitor Watts and, basically, wait.

His fever has stayed relatively low through the night and day...possibly because of the round of antibiotics, possibly because it's a virus running its course. We wait now to find out if his blood cultures will grow anything and we also wait to see what happens when the antibiotics are out of his system. We will go on Friday morning to clinic and check his Immunoglobulin (aka antibodies) level. If it is low, he will get an IVIG transfusion and it also might be part of the why he has gotten sick.

Please pray for our little Warrior-Boy and for our spirits. And for sleep too!

On Papa's day.

To the man who has given his all to this little family this past year... Thank you, babe. To say that we all adore you would be an understatement. As we've traveled through the valley of Baca over the last twelve months, you have selflessly loved and served us, led us when the way seemed uncertain, and held up our weary arms when we couldn't stand any longer. Even through the chaos and darkness of the wilderness, our children have rested each and every day in your love for them and are at peace when you are near. Oh the sweetness when they gaze at you!

Although I would rather not relive this past year, I have encountered Christ on a daily basis in the way that you have loved your children. If an earthly father can love his babies with such utter abandon, how much more does our heavenly Father love us?

Oh, how He loves us.

Day 4 of the dreaded 'roids.

Watts and I are awake early watching some Thomas the Train and "feeding" Little People some cheerios [Watts thinks it is so fun feeding toys... Putting it in his own mouth is another story.]

This is a tough steroid week. Starting yesterday morning (on Day 3), Watts has just been a mess of tears, rage, and up and down emotions. Despite our best intentions, we can not seem to offer very much comfort. He's hungry, but is enraged if we offer him anything. He wants to play, but we can't seem to play to his liking. He'll get so angry and frustrated at a situation that his whole body will start shaking... and over something little like offering him an M&M that he requested in the first place.

Poor boy. And us too...but we are thankfully able to know that this is for his own good and is only temporary. Every day we count down the doses left for this round and even Piper knows about the "yucky Leukemia medicine that makes Watts feel angry." Six doses down, four to go!

Painting-- One thing that has seemed to have a calming effect on Watts this round.

Maintenance-- One month in.

Watts' make-up lumbar puncture went well yesterday morning. We were first on the schedule, as the babies always are, so Watts and I arrived at the clinic at 7:40am and were down to the sedation suite by 8:20am. It's a crazy thing to hold your child as they are put to sleep... and to do it more than times than you can remember. It becomes routine in a sense and yet is still disturbing each and every time. Watts is usually fine up until the last 20-30 seconds before he loses consciousness, then he panics and cries. In a room of three doctors and a nurse, I usually sing to my boy as he drifts off. The team will be quiet until I lay him on the table and then they resume their comfortable chitchat as they work. With another kiss or two and a glance back at my tiny little man on such a big bed, I leave the room and sit outside the closed door. There is a waiting room down the hall but when I'm by myself I like my seat on the floor; if I'm quiet enough, I can hear the murmur of voices and the beep of the machines. It is comforting to this mama's heart.

Our doctor is soon out and says that everything went fine and that he should be waking up soon. A few minutes later the nurse opens the door for me and we stand by the bed and wait for Watts to wake up. The anesthesiologist yesterday made small talk with me and remembered that he did a bone marrow biopsy sedation for Watts about a year ago. I remark that we have come a long way since then...thank God. Watts moves his legs a bit and starts to wake. The sedation team gives the okay and I scoop him up and tuck his floppy body in the Ergo before making my way back up to clinic. Another sedation done.

I wonder how many times he's been sedated in the last year? 

Someday I'll have to look back and figure it out. 

Loopy Watts post-sedation...and rock'n his new tube!

The rest of the appointment went well yesterday. His counts are okay...no transfusions needed but his ANC is a bit high (at 2000) for where they want it during mainetance. In two weeks when we check his counts again he might have to have his chemo dose increased. They want his ANC to hover between 500 and 1500 and will be tweaking his dose if it doesn't stay in that range. Cough-wise, the doctor also decided to start Watts on some allergy medication to see if we can clear up his chronic cough. Weight-wise, his dropped a bit (which we learned prior to the sedation) so we made the decision to put the NG tube back in while he was asleep. Hopefully this will eliminate some stress around mealtimes and help us boost his nutrition a bit. For some framework, Watts' weight is somewhere around the 45%...which is great, but we want to make sure that he doesn't drop out of that range so that if he does get an infection at some point we have some 'wiggle-room' to play with. His height is around the 1-2%. He is wearing size 9-12 month clothes...the same size that he wore when he got sick over a year ago. Sweet little guy. We finally went and bought him some new shorts yesterday that don't swallow him up!

Overall, Watts looks great and the doctors are please with how well he is doing in treatment. It is crazy to only go to Brenner every 2-4 weeks (and we sorely miss the staff) but is also so good for Watts to start having more of a normal childhood.

Thank you for the continued prayers for our "Atts," as he calls himself.

A little update (finally).

Whew, it's been awhile since I've really updated! Life is busy these days with all kinds of gloriously normal things like play dough and painting and morning walks and refereeing the “loving” between an almost 2 yr old and almost 4 yr old. We also were just able to take a trip to the beach-- our first non-hospital trip for our little family of four! It was wonderful and exhausting, of course. No book reading or laying out when you have little ones:) Pictures to come.

Maintenance has been good to us so far. Watts’ counts are where they should be (mild neutropenia) and other than getting an IVIG transfusion last week, he hasn't had any other necessary transfusions or extra time at Brenner. On Tuesday, Watts is scheduled to go to Brenner for another lumbar puncture and IV chemo and he will start back on steroids.

Other updates:

-Watts is finally sleeping better at night. Hallelujah! One or two wake ups at night is much more doable (particularly after a year of him sleeping like newborn) and very good for my sanity.

-Developmentally, Watts is doing great. He is saying new words each day and physically is a wild man and constantly climbing (on everything everywhere!) and running. Each milestone amazes me. Some new words and phrases that he has been saying lately: "I did it!" "Go, dog, go!" "I don't know." "Did-e-on Atts (Gideon Watts)." And, of course, "Papa, Papa, Papa, Papa, Papa, Paaaaaapaaaaa!"

-Food-wise, Watts is having a hard time wanting to eat now that he is back on 6-mp (the chemo drug he takes daily). Almost every bite has to be coerced into his mouth, poor boy. We are going to wait till Tuesday and then reevaluate with our team whether we should put the NG tube back in or possibly start him on an appetite stimulate. Obviously we would love to stay tube-free, but it is also incredibly stressful trying to get calories in a headstrong toddler with absolutely no appetite.

-Watts' chronic cough lingers on. Despite having the NG tube out for several weeks now, Watts can not seem to shake his rattly cough and nasal discharge. Some weeks it'll seem to get better and then it will come back with a vengeance. I have read that some Infant ALL babies have these coughs till they are off-treatment but I would love for that not to be the case for Watts.

-Some of Watts' favorite things to do right now are to climb up on top of furniture, play with a bucket of water outside, play in the sandbox and put sand on his head, run around naked after a bath, run away from me at a store (or a park, on a sidewalk, or anywhere really), "race" with sister around the house, and play on any electronic device. Sounds like a normal almost two year! Praise the Lord. And I need some help learning how to discipline a wild baby man going through cancer treatment... Anyone?

As for Piper, she is her usual extroverted, creative, winsome, delightful self and fills our days with laughter, dramatic role assignments, and a whole lot of Lightening McQueen. Gone are the princess days and hello to a little red race car. We don't quite understand the obsession since she's only seen the movie twice, but we are trying to just go with it. If you hear Piper ask for Doc at church one Sunday, that would be me. Michael is Mater and Watts is Luigi 99% of the time.

As for myself, in these so-close-to normal days filled with such normal activities and seemingly normal healthy kids, my heart is a discombobulated slew of thankfulness, weariness, joy, and reoccurring cold fear that pops up during quiet moments. Darn cancer. It is still a dark cloud overhead, if I’m being honest. I am grateful to have made it this far in treatment and am savoring all these outpatient days, but Michael and I are truly just now catching our breath after a whirlwind year and are always cognizant of the fact that this journey isn’t over yet. This season is nerve-wrecking to a mama's heart, but there's good in it too, I think. I am having to learn once again how to grapple with my fears and to not have them control my days; to leave my tomorrows and their worries in the future, and to stay present in today. I am thankful for a God who is big enough to handle all my fears and who had promised to walk beside me. I know this to be true: He has been faithful to me and my family every step of the way.

Siblings.

Sweet blessings. 

[I wrote a long blog post and then it disappeared. Grrr. In short, all is well. 

Thank you for praying for our Warrior-Boy even when the blog is quiet. Will try to post again soon.]

Diagnosis Anniversary

(thanks, Griffin, for capturing this great moment!)

This could so easily have been a different kind of anniversary. We think about that reality every single day (made more acute by several friends having lost children in the past year). All I can say is that God spared Watts' life one year ago, and we are so very thankful. Thankful that God has put breath in our lungs and woken us up this morning. Thankful for incredible medical staff and medicines to heal sicknesses that in the recent past were incurable. Had we lived in another time or place, Watts would not have survived the infections that brought him to the PICU a year ago (as it is, he was within hours of not making it). One thing that our family has learned this year– maybe the most tangible thing– is to appreciate the day that we wake up to. I'm not saying that we do this all the time, and that grumpiness, ingratitude, and "How can I be so tired?" are not an everyday thing around our house, but the sense that the future is so uncertain with Watts has made us soak up time with him and each other. Life's fragility, in a strange way, has made our family much stronger. A year ago in the PICU, terrified and confused, I could have never imagined this to be true, but it is. And if this past year was the all the time we had gotten with Watts, I would be so grateful for all the special moments.

Hannah, you are amazing. Your strength in sustained hardship is beautiful and inspiring. You have loved so well this year. Piper, you astound me with your resilience and encourage me with your sweet and silly spirit. Watts, you are my little hero. I am so proud of you, buddy.

Family and friends, near and far, you have loved us so well this year. Thank you for all the meals, prayers, emails, gifts, text messages, phone calls and visits. We couldn't have survived this year without them.

El Shaddai, you have been true to your name as you've loved and carried us along. Thank you for your goodness to us, even in some dark, shadowy days.

Sunday (a year ago).

A year ago today, I wrote this post on our family blog:

-------------------------------

This morning finds Watts and myself holed up with a stomach bug. No church for us, and also no papa for the morning.  Poor little Watts is miserable with a high fever and diarrhea and has been laying lethargic in our arms for the past 24 hours. It is so sad but also has a twinge of sweetness because we haven't had this much cuddle time with him since he was little bitty.

Little Piper has, so far, escaped this bug and is as chipper and busy as ever. In desperation this morning, I set up stations throughout the house (a puzzle station, a book reading station, playdough station, playmobile station, etc.) in hopes that she would play for a few minutes by herself.

I lay on the couch as I watch her move with excitement from station to station. She chats to me as she moves, "Mama, you play with me?" "Here, Mama, you pick a sticker!" "Mama, I come play by you." She is so deeply relational and seems to want to engage with all of the world with someone else. If she makes a beautiful picture, she can't not share it. If she is playing with water, she wants me to taste her "soup". She wants to share her ice cream, her stories, her books, everything.

While this is a huge struggle most days because Piper never ever wants to spend any time doing anything by herself, I also love it about her and can identify with her too. My sweet relational little girl, how I love you!

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We know now, of course, that it was no stomach bug. Later that night we made our first ER trip (and were sent home). Little did we know how our world was about to come crashing down and how close we were to losing Watts that Memorial Day weekend of 2013.

Today, one year later, we are watching  cartoons in the early morning hours as Michael heads to church to get ready for the service. Yesterday we had a yard sale and chatted with neighbors and drank too much coffee.  Watts stayed in the periphery playing with yard toys as we sold random junk (finally unpacked from remaining moving boxes). In the afternoon we had a spur-of-the-moment visit from my family for dinner and a birthday celebration for my brother. It was all a full day and all very normal. We are unbelievably thankful for normal.

God moves in a mysterious way
His wonders to perform;
He plants His footsteps in the sea
And rides upon the storm.

Thankful.

Lately I've been thankful...

For my bald baby and his sweet little soul, even at 3:45am when he decides to start his day.

For medicine and chemotherapy that fights and kills leukemia cells 

(Reminding myself of this as Watts as one more day of steroids for this round...I hate the stuff).

For freshly picked strawberries.

For the rain and the cool breeze coming in through the open windows.

For a fixed AC after a (hot) week without it.

For new library books and kids that love to read.

For the joy of being home. We are soaking it up with picnics on the porch nearly every day, lots of water play, walks, homemade Popsicles, and all kinds of "normal" things that feel like such a privilege and a blessing.

Very thankful.

LP update.

Watts did great for his lumbar puncture and has started on his steroids...three doses down, seven to go! Thanks for the prayers.

Lumbar Puncture today.

Quick update this morning... Watts' counts looked good yesterday (ANC 750, PLT 300, HGB 10) so we are heading to Brenner in a few minutes to start Continuation II (aka Maintenance), our last and final phase of treatment, which will last over a year. If all goes all scheduled, Watts should be sedated around 8am for his intrathecal chemotherapy. He will also get an IV push of Vinicristine or Methotrexate, I think. I can't check right now because I am hiding from hungry Watts who can't eat anything before his procedure. Whenever he sees me, poor boy, he starts signing to nurse and can't understand why I'm saying no. It has to be weird to him, because 99% of the time I'm trying to coax him to eat. Ha!

When we get home later this morning, hopefully, we will start the dreaded steroids. Ugh.

Thank you for prayers (in advance)!

Me and my boy on Sunday.

A prayer on Mother's Day.

I'm up early with my boy and Elmo is on in the background, which is a joke really because I'm much better entertainment as a jungle gym. I sip my coffee and Watts periodically climbs onto my lap and smushes his face up against mine. Snuggles help greatly with the grogginess of the early morning hours.

It's Mother's Day today. My little family celebrated me on Friday so today is just any other day which I'm completely fine with because this holiday seems silly to me anyway (so rote!). 

Silliness aside, however, this morning my heart feels heavy for many. Mother's Day for a lot of women, I think, serves as only salt on the wounds of loss, of fear, of desires unmet. This morning I want to remember the women who are hurting and missed on this "holiday"....

For the empty arms of mamas whose babies have left this earth too soon... There are simply no words to say. Lord, hold them close this morning.

For fellow mamas of sick babies whose hearts fight daily with anxiety, exhaustion, and fear...Lord, give them, us, peace this morning.

For the aching wombs of women longing for children, whose infertility journeys are long and arduous and stretch before them without clear hope or promise...Lord, be near to them this morning.

For the single women who long for their own families, their own babies...Lord, be close to them.

For all the women blessed and challenged to be on this rocky road called motherhood... Lord, gently lead those that have young.

A week later.

It has been a week since we were discharged from our last fever scare and we are still very, very thankful to be home. Unexpected hospital stays are a bit rough on our little family, so this week we have been trying to re-group, take some long walks, work in the yard, and catch up on sleep. I think that I am breathing a bit more normally now and am not quite the nervous wreck that I was last week at discharge. Maybe :)

Watts is doing great. His counts shot up on the neupogen this week so we discontinued the drug and are hoping that his counts are still hovering in a good range. We will officially check them on Monday and, if all looks well, will go to Brenner for a lumbar puncture and chemo on Tuesday. This will mark the officially beginning of Continuation II (aka maintenance).

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I wish I could figure out the right words to accurately describe this little guy. When he was first born, we thought for sure that he was our laid-back little one (especially compared to our firecracker, Piper) and he was as a newborn/young infant. It turns out we were wrong, though! As Watts has gotten older and has moved past the more intense part of his chemo treatment, his wild, hilarious personality is coming out more and more. This boy is a hoot! For example, as I ran a quick errand with the kids today, I happened to catch Watts' eye when I glanced at the rear-view mirror...without missing a beat, he tilted his head, stuck out his tongue, and made a goofy face back to me. And then continued to make crazy faces for the next ten minutes straight... of course egged on by Piper's and my laughter.

We have just loved getting to see Watts actually feeling a little better and getting to know his goofy, precious little self. 

Other newsy updates on Watts:

• These days, he is saying new words almost everyday. Today, he said "squirrel".
• He is eating better. Current favorites are bagels with cream cheese and scrambled eggs. We are dreading the start of his appetite-zapping chemo drug, 6-mp, but are enjoying his appetite while he has it!
• His hair is falling back out...for what will hopefully be the last time ever. 
• He is learning how to take his daily medications orally and is doing great with the transition. The very first time we gave him his meds by mouth, he threw them up; this morning, he took them without protest! 
•  He is very much a mama's/papa's boy and wants to be with one of us at all times. This seems to have gotten a bit worse after the last hospital stay, which is understandable, and makes for some trickier days at home. This could definitely simply be developmental, but also seems linked to hospital stays. Hopefully he'll work through this as we get further into maintenance.
• Watts' favorite toy right now is a plush monkey from the nurses and his favorite book is Dr Seuss' How The Grinch Stole Christmas. We don't really know why, but he will sit through the whole entire book and ask for "moe [more], moe, moe!" as soon as we try to put it away. Funny boy.

Home!

We are home. Hallelujah! Watts' ANC scooted up a little bit over night and around 1pm the doctor surprised us and generously decided to send us home. 

The next couple days we will be keeping an even closer eye on Watts and giving neupogen shots to help his WBC to recover more quickly [under 500 is severely neutropenic-- he is currently at 80]. And just in case, we've already repacked our hospital bags. 

Thank you for the prayers over the last couple days. We are so, so thankful that our boy is back to feeling like himself. 

Another Brenner day.

This will be short because Watts is asleep on my chest, but I just wanted to update and say that Watts is doing great. His energy level is picking back up and he has been afebrile for 24 hrs. His neutrophil count is still at zero but his monocytes jumped up over night (they tend to be the first to recover) so there is a chance we could go home tomorrow if his neutrophils decide to follow suit. Most likely it will be Sunday or Monday, though. His platelets and hemoglobin have dropped but have not required transfusions 

We will go home and keep Watts isolated and on neupogen until his counts make a full recovery. I can't wait! I love this hospital and the staff dearly but I am ready to take my family and break out of here.

Dr McLean told me today when he rounded that our family seemed like we were "not only surviving but thriving" in the midst of this cancer marathon. Sweet, encouraging words to be sure, but the image I had in my head, I told him, was of our kids thriving and running ahead of us, and Michael and I hobbling and limping behind. Ha! Lord help us, it is going to take Michael and I years to recover from the emotional and physical and mental strain of the last year. 

Yet I wouldn't trade it for the world.

 PS. My superhero mother is back here in Winston and has saved the day by helping us with Piper, bringing up food, and giving me a hand with Watts while Michael works. Thank you, Mama! 

Morning update.

It's 6:30am, Piper is asleep on the mattress on the floor and Michael and I are sipping coffee from our contraband coffee maker and taking turns holding our little early bird. 

Watts is doing well and seems to feel like more like himself this morning. The night had multiple wake-ups but was overall a MUCH better night than the night before. His fever spiked to 101.4 (not on Tylenol) so cultures were done on him again but a dose of Tylenol helped cool him down enough to go back to sleep. 

Yesterday his first round of blood cultures came back as negative at 24 hrs which is very, very good. The virus panel they ran on him came back as positive for the Corona virus (a very, very common cold) which may or may not be the cause of the fevers. This is the same virus that he had 12 weeks ago when we were hospitalized during Watts' neutropenic days but is most likely a new strand that he picked up in the last couple days. The doctors guessed he probably picked it up in the hospital. Watts will stay on the Ceftazidime (antibiotic) for a few more days just in case "they are missing something."

I am very, very thankful... Michael and I both had some flashbacks to the early, pre-diagnosis days from a year ago during the worst of these fevers and are very thankful that this virus/infection/neutropenic fever seems to be under control. We know that this could have gone in a different direction.

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As we near our one year cancer anniversary and are getting close to the start of maintenance, I have been thinking through the future of this blog. I will obviously keep it and post with any medical changes, treatment status, etc but I also am cognizant of not wanting to clog up people's email accounts with a plethora of pictures of my adorable children;) Thoughts? I actually do not really have a clue of who reads these posts other than my family and close friends...