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:

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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...