sweet Piper.

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

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

Saturday smiles.

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

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

Tired

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

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

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

Great is Thy faithfulness,” O God my Father,

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not

As Thou hast been Thou forever wilt be.

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

Morning by morning new mercies I see;

All I have needed Thy hand hath provided—

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

 

Home and 'roid rage.

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

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

Monday update (day 5 of ER hospital stay)

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

Below is our cute spaghetti-face boy...

Sunday.

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

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

Off to snuggle my now-sleeping wild man.

Silly boy.

Morning update

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

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

Edited to add: 

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

Thankful.

Thankful for many things tonight...

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

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

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

For encouraging words from kind doctors.

For coffee brought from a friend this morning.

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

For our ninja-night nurse, Kimberly

For warm hugs from RMH staff.

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

Not what we were hoping for....

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

Morning smiles.

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

Fever and smiles.

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

Still waiting.

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

ER trip.

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

Ramblings from Papa

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

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

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

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

And Piper says, "About what?".

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

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

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

Today.

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

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

Home sweet home.

After a short blood transfusion delay at the hospital, we came home to our new house on Thursday! We've been up to our necks in boxes and projects the last two days, but can't stop admiring the smooth, popcorn-free ceilings (thank you, dear friends!), enjoying the extra space, and working our poor family members like dogs (thank you guys!). We love it and feel very, very blessed.

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Sweet Watts has been all out-of-sorts the last couple of days. The steroids are doing a number on him as are the lingering effects of the chemo and he is just an angry, irritable, weepy little guy most of the time. Prayers, of course, are appreciated. While it is to be expected, it is still hard to watch as parents and to know how to help.

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Happy birthday to my best friend and lover, Michael. There are truly no adequate words to say how much you mean to me. I love you and am so thankful to be partnered with you on this crazy journey. You are the best of the best.

Nap today

He'll sleep as long as I'll hold him this afternoon... And I'm happy to oblige. He is still irritable but no major fits like yesterday.  So thankful that he's resting right now.

Divide and conquer.

It is a busy week this week... It leaves my head spinning, honestly. What a crazy life this is! The kids and I are in Winston for Watts' treatment (with my mom and sister, Suzi) and Michael is in GSO, running point on all the moving and house stuff. Yesterday the closings both went well and we are now homeowners of the house we've been eyeing for over a year... and passed on our beloved whitewashed house to young newlyweds. We brought both our babies home to that whitewashed house and put in a lot of hours of sweat and tears into it, so it is bittersweet to move on. That being said, with the new house we'll have almost twice the square footage with a smaller monthly mortgage payment, so it's only a little bittersweet;)

Michael told me that there was a small army of people over at the new house yesterday to scrap the popcorn ceilings and another group of people signed-up to move all the boxes and furniture today. Thank you guys!! What a huge, huge gift to us. I can't wait to see everything.

Happy baby during chemo.

Sweet Watts has had a hard time this stay. In the course of a couple hours, he went from smiling and babbling and pointing at helicoptors, to screaming nonstop for 30 minutes immediately following his Cyclophosphamide dose. He finally calmed down after some Tylenol, Benadryl, and a visit from Piper (and silly Gigi), but his mood is definitely more subdued and irritable. We are not sure if his fit was in reaction to the CPM or irritability from the steroids or exhaustion. He has gotten a lot of drugs in the last 72 hours and it seems to be catching up with him. For those that are curious, on Monday and Tuesday he got Daunorubicin, Vincristine, and Dexamethasone. Yesterday and today he will be getting Cyclophosphamide, Dexamethasone, and (only today) PEG-ASP shots. Oh, and he also had Triple Intrathecal Therapy on Monday and received Methotrexate, Hydrocortisone, and Cytarabine. And a bone marrow aspirate.

Post-chemo and crying fit.

He is a trooper! We are hoping and praying that after his 12:30pm (and his last 12:30am) dose of Cyclophosphamide that he will not have any reaction and that he will nap well today despite the steroids coursing through his system. 

We are scheduled to go home (to our new house!) on Friday and should be outpatient for the next 17 days. Once again, his counts will bottom out in a few days so we will need to be extra careful and isolated to keep him from catching a virus or infection. After the 17 days, we will start the Consolidation phase of our protocol which is almost all inpatient... But, we'll cross that bridge when we get there.

Thank you for all the support during this crazy time in our family's life. Words can't express how much we appreciate it.

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