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I have two hands again (Watts is napping in his crib!) so I thought I’d write a bit more. I’ve found that writing is therapeutic for me, a way to document this journey as well as semi-process some of this chaos.

On Sunday, Watts began bleeding out of his mouth. He had bled before from his mucositis but this blood was significantly more and did not seem to stop. After a call to the heme/onc. doctor on call, we headed to Brenner Emergency Room. We hoped that he would get platelets and they would send us home in time for Piper’s birthday the next day.

Instead, once we got there, they picked up a slight fever (100.1) so they decided to start antibiotics. He also needed platelets so they admitted us. ANC was around 600, I think. Watts was acting no worse than normal so I was hopeful we’d still get to leave the next morning.

After hours downstairs, they moved us upstairs and Watts and I settled in for a long night. Monday morning we found out that they wanted us to stay another night so that they could monitor his “fever”. I was frustrated because 100.1 is not considered a fever BUT because E.R. started antibiotics we had to wait to see what the temperature was going to do on its on.

Long story short, they were right. His fever started climbing, his ANC plummeted, and his blood cultures came back with growth in them.  He has some sort of blood infection going on and we won't know what it is till the cultures grow some more. In the mean time, he is on two antibiotics and a heap of pain medications for the horrendous mucositis that has now swept all the way down his GI tract to his poor diaper area.

So here I am, camped out again at Brenner, but unfortunately with Watts not doing chemo, but fighting another infection. This is very much par for the course, I’ve been told, but it still triggers some awful memories of the first blood infection that was at the beginning of all of this.

This practice of thankfulness is challenging but a sweet reminder of the good that still surrounds us… 

Today I am thankful for:

 

My husband, who is a rock star.  

The sweetest “birthday party” in the hospital room last night.

My resilient, hilarious, precious 3 year old.

Presents for Piper from the nurses and the RMH staff.

Watts’ strength.

My mom-in-law who dropped everything to come help.

My sister who hung out yesterday, wiped up vomit, and brought me Thai. 

Gas cards from sweet friends and family..

The cool walk this morning with Piper from the RM House.

His mercies are new every morning, great is His faithfulness. Once again, He sustains us.

A very humble thank you.

This isn't recent, but I love this old picture from June.

 We have been blessed. From the beginning of all of this madness, we have been surrounded and cared for by so, so many. I don't even know how to begin to thank the many, many people who have blessed us in the last two months. Sometimes when I'm rocking Watts to sleep, my mind will wander and begin to think all of the crowds of people who have prayed and worried and wept for our son. And us. We have been sustained by those prayers, those words of encouragement, those cards, emails, and those special friends who sent texts at the same time every night during our 38 days in the hospital. Thank you.

For the gifts and meals and puzzles and crayons (and on and on and on), thank you. Each one, in some small way, eases things a little. A gas card to help with another car trip to Brenner, a restaurant gift card to fuel our weary bodies, money to put towards some of our medical bills, coffee money, etc. Thank you. As a frugal family, your generosity has allowed us to breathe a little during a financially stressful time. We are so grateful.

For those that have mowed our lawn, watered our plants, cleaned our house for our open house and showings, fixed our lawn mower, and who knows what else, thank you.

To the family who have wept and worried with your grandson and nephew, holding vigil out in the lobby during the terrifying early days, thank you. Particularly to the grandmothers who have spent days and weeks caring for Piper during our long stay at Brenner, thank you. 

We are very blessed and very, very grateful. 

Home again!

Watts didn't clear the methotrexate last night (was only .02 off!) but did this morning. Watts and I left Brenner within minutes of getting the results and are now home and resting. It is so, so sweet to come home.

Watts' mouth sores seem to be getting worse but his rash and mucositis seem to have plateaued. His nauseau also seems to be getting better.

Thankful today for...

My crazy hilarious almost 3-year old.

A new chemo bag.

A resilient boy. 

A hot shower in my own home.

The comfort of a favorite meal.

Mid-morning coffee.

Family and friends who drop everything to come help when needed.

Thankful for...

Hugs from old friends.

A resilient daughter who's tender and tough.

A son who grabbed my cell phone this morning.

My mom who hasn't gone home since this has all started.

A visit from one of our (awesome) PICU nurses, Holli.

Hearing about the masses of people praying for Watts.

Dr Russell, who speaks truth and encourages weary parents.

Thai food. 

Nurses that tiptoe when Watts' sleeping (they love our boy, I can tell:).

Java by Jeff Coffee. Best in the hospital.

(I just need to start a petition for them to be open on the weekends)

Danskos.

This boy...

Visiting

We've been overwhelmed (in a good way!) by the love and support that we've been shown over the past couple of weeks. Many of you have asked about visiting us at the hospital and we wanted to let you know that we appreciate that. Things have been, and continue to be, really unpredictable in terms of daily schedule. There are teams of medical staff from at least 5 departments who are checking in on Watts throughout the day, plus the frequent nurse visits for his 10+ meds, antibiotics, etc. and normal hospital stuff. Additionally, Hannah is pumping every couple of hours to keep her breastmilk supply up, and we are trying to spend time with Piper whenever we are able. All of this adds up to hectic and exhausting days. That said, we love and miss you guys. If you want to come by the waiting area and say hello (and bring us coffee?!) please text first and know that we may not be able to visit for more than 5 minutes, or might get suddenly pulled away. We're not having visitors in Watts' room right now because of his compromised immune system. And if you are or have been sick, please wait to come see us. Thanks for being gracious with us in all that.

Praises

Nurses who advocate for our boy.

Staff who whisper that they too are praying for the little warrior.

Gifted granola bars that will last us years...or at least a few weeks at the rate I'm eating them.

Hymns. 

Milk that defies the odds. 

Borrowed Chacos that ease my aching feet.

Perspective from being in the ICU for so long.

Doctors who convey hope for our son.

support

Today we received a care package from our church family. WOW. I hesitate to even call it a care package because it was so extravagant and thoughtful. Gifts, food, gas cards, gift cards, and lots of beautiful letters and notes. What a blessing to be so held up in this season, and reminded that we are not alone. Thank you, Hope Chapel, we love you.