Sadness.

The "king" of Brenner went home to be with the Lord yesterday after a 20 month battle with Infant ALL. While we rejoice that little King is no longer in pain, that he is cancer-free and done forever with needles and treatment and tears, our hearts break for his family and we acknowledge and cry out that this is not as it should be.

This is not as it should be. Come quickly, Lord Jesus.

Thankful.

Thankful...

For Watts not getting a fever over the weekend. Thank you, Jesus.

For the extra 10 ounces of weight that Watts gained two weeks ago...

he has now lost those ounces due to being sick, but it is wonderful that he had that extra cushion. 

[He's appetite is slowly returning so we'll start playing catch-up again soon.]

For the Arts for Life volunteers who did projects with Piper on Monday 

when we were at Brenner for IVIG and chemo. What an amazing program!

For sibling love that seems to be growing by the day. 

For late night root beer floats for tired parents. Glasses of wine are nice too.

For a beautiful weekend and time outside in the sun and finally raking the leaves from the fall.

And photos from the past week...

These two were little troopers at Brenner (for 6 hours!) on Monday for IVIG and chemo. I expected the doctors to reschedule the appt and was NOT planning on doing this solo with both kids, but with 5 minutes notice before we had to leave, I didn't really have a choice. They did great, thankfully. 

Not going to lie, I cried tears of fear on the way there, though. And tears of relief on the way home.

He's becoming quite the explorer...

But still likes to nap on me (sometimes at home, all the time at the hospital).

The kids "decorated" the guest room for me and were very excited to show me the different "rooms" and "dance floor". This is one of the first times they have played together on their own initiative for longer than 2 seconds, so I had to document the moment.

 Some of the meds from the last seven days... Ugh.

And a sweet shot of my sweet little man.

Long night.

Watts caught the stomach bug and threw up off and on all night long, BUT he had no fever (hallelujah!) so we didn't have to make a trip to the Brenner ER. Hopefully last night was the worst of it and Watts will be on the mend when he wakes up this morning. Poor buddy. Steroid week followed by a stomach bug is just no fun at all.

Michael was amazing and spent more than his share of the night in the rocking chair with Watts sleeping (and throwing up on him) so that I could try to rest and fight off my own nausea and headache. He should win some kind of parenting award, I think :)

Thank you for praying. We are so, so thankful that Watts has stayed fever-free.

Steroids done (for now) & Stomach bug.

After a long week of grumpiness, tears, and broken sleep, we gave Watts his last dose of steroids (for this round) last night. Whew! It generally takes a day or two for the drug to get out of his system so hopefully by Sunday night Watts will be back to normal. This round was a little different than the times before because Watts didn't seem to have much of an appetite. He nursed normally but wasn't the eating maniac that steroids usually brings to us. I've read that this can happen and that each steroid round can bring us new side effects, but this one was a little more stressful since we want him to be maintaining (and gaining!) weight. We added in some bolus feeds of organic whole milk + yogurt that he seemed to tolerate fine.

We are scheduled to go on Monday for outpatient chemo and an IVIG transfusion. We will have three weeks of outpatient chemo with weekly appointments and chemo pushes at Brenner and daily oral chemo given at home. In three weeks, we will start back on the awful steroids.

*The hard week was made a lot more tolerable by help from friends (thanks Marianne and Francie), surprise tulips on the porch, a quick date with Michael, warm weather so we could get outside, and some well-timed time out of the house for me (thanks to Michael's persistence).

Unfortunately, just as we were starting to breathe some deep sighs of relief after giving Watty his last steroid dose, Piper started throwing up and now has a fever. While Watts is not severely neutropenic at the moment, if he catches this virus it could mean another admission for us. Please pray that he miraculously doesn't get it. Please pray for continued wisdom for both Michael and me. We agonize over when to allow Piper to go to church events, play dates, etc. and are trying to find a balance of living life and protecting Watts. We have aired on the side of protecting Watts the last few weeks but allowed Piper to attend an event mid-week with Michael . . . sadly that's where she most likely caught this virus. Although this makes me want to lock my family in a bubble until treatment is over, I know that that would not be healthy for our sanity or developmentally appropriate for Watts and Piper. Prayers appreciated. All of this feels tricky to navigate through...

UPDATE: Piper's fever is down and she seems to have more of an appetite so hopefully this was only a 12 hour bug. I feel a little queasy but thankfully have a strong stomach and immune system and should be fine. The boys are great so far!

Lumbar puncture.

The lumbar puncture went well this morning. While he was sedated, he also got a new NG tube and his monthly Synagis shots. I'm very glad we didn't have to do those while he was awake. We are now home, have given his first steroid dose (ugh!), and are deeming today a "Watts day." Sedation drugs + chemo + zofran + steroids + Synagis shots = a cranky and loopy little guy. At the moment he is dancing in a circle to music from Aladdin while growling and moaning intermittently. Poor buddy.

We also received good news while in clinic: Watts has put on several ounces in the last couple of weeks and has put himself up into the 50% range! This is such a relief. If he continues gaining weight, we are planning to stop his nightly feeds (8 ounces of Pediasure) after his next hospitalization in eight weeks. If he does well without the nightly feeds for a few weeks, we will most likely be taking the NG tube out. We have been so thankful for the NG tube over the last almost nine months, but it will be wonderful to see his little face with the tube and tape on it.

Thanks for your prayers and thoughts this morning! Please continue praying for minimal side effects for Watts while on these five days of steroids...they are just so, so hard on his little body.

Delays and hair.

With the snow and ice over the past couple of days, Watts' lumbar puncture got rescheduled for Monday. We could have easily gone yesterday after the sun came out, but Watts has to be at Brenner at 8am to get the first appointment of the day since he has to be "NPO" (Nil Per Os meaning to withhold all oral food) for his sedation...Trying to explain to an 18 month old why he can't eat or drink for long periods of time is never, ever a good idea. We've never had weather-related delays before but we've been assured by our primary doctor that Watts' treatment has not been compromised...otherwise we would have risked leg and limb to get there!

In the meantime, we are enjoying a few more days with our happy boy before we start steroids...

And we've said goodbye to Watts' hair again. Three weeks after our last chemo inpatient stay and his hair is falling out quickly, and in the shape of an awesome mohawk currently. If all goes as scheduled, his hair will fall out one more time in about two months and then it'll grow back in for good, hopefully!

And here's a couple obligatory snow pictures. Our kids were daredevils and even went sledding down the big hill behind Lindley Elementary. Watts kept signing "more", "more".

And now we wait and ache for Spring. No more snow for awhile, okay?

Update and Piper quotes.

Watts is wild and happy and as stubborn as can be. His counts recovered on Monday so we discontinued his neupogen shots and are scheduled to go to Brenner for a lumbar puncture tomorrow morning. We aren't sure how the weather will impact his appointment, but if we go as scheduled, he'll be sedated around 9am. He will also start five days of the awful steroids. This will be the start of the second round of the 8 week cycle we just finished.

Lately, some of the doctors have been expressing some concerns about Watts' weight. Although he has gained a little bit each week, they want to see him closer to the percentage that he started in when he first got sick. He started in the 75% and is now hovering around the 40%. Their concern is that if Watts gets another serious infection, he will most likely lose more weight and this could hinder how well he can fight off the infection.

This is stressful, to say the least, but we are trying to make mealtimes with Watts still enjoyable and pressure-free. Our secret weapons so far has been letting Piper "feed" Watts (even though he normally feeds himself, he finds Piper helping him to be hilarious) and also letting him use toothpicks to pick up his food. We also have a wide variety of yogurts, crackers, dips, and high fat-content ice cream to try and coax in a few more calories. I am going to talk to the doctors more about this tomorrow and also share some new information: after looking back on Piper's old medical records, I realized that Watts weighs the exact same as she did at the same age. . . so most likely it is not realistic to think that Watts is ever going to be in the 75th percentile again. We'll see what they say. The big picture is that Watts' looks really good, is mobile, active, and exploring with new foods. This is something to celebrate! Even as we try to get some more meat on his bones:)

Side note: I am pretty resistant to increasing his night feeds through his NG tube because I feel strongly that this will only decrease how much he eats by mouth. It is, however, always an option. 


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Some Piper quotes (all from today) for my brother, Caleb:

"I am a fairy princess that makes people well... Let me look in your throat. Yep, you look good."

"Look at my best friend, Watts, do an amazing jump off the pillow!"

"Actually, that line on the throat is a gate to keep it's bones from going into it's head." 

[Pointing to her drawing of a duck.]

"I want to have Claire and Norah and Canaan over and we can race upstairs and have the Olympics and then we can race downstairs and see who can say "¡Hola!" the fastest. It'll be so exciting!"

Full Hearts

Last Saturday night our church, Hope Chapel, organized a benefit concert for Watts with Andrew Peterson. Hannah and I have been listening to his music and seeing him play for almost 14 years now. Seeing the room filled to the brim with our community (from near and far) was so encouraging. Being reminded of the hope of the Gospel through story and song was a balm for weary hearts. I can't imagine a more meaningful evening.

A personal highlight for me was having Andrew sing "The Silence of God", one of my favorite songs in the world. I had actually written a little about it here a few months ago (http://cloudsofmercy.blogspot.com/2013/07/theology-of-suffering.html). I wish we had video of the introduction and performance of the song, it was beautiful. You can download the song from itunes though (and you should!).

THANK YOU to the team who organized the concert: Hannah and I didn't do anything, and that in itself was a gift!

THANK YOU to all of you who came to the concert or made contributions to make it possible: it was really a tangible reminder that we are not alone.

THANK YOU to Andrew Peterson for your music and heart and for bringing so much honesty and vulnerability to the stories and songs. We were so encouraged.




Our friend Jason made a video telling our story, to be shown at the concert. You can view it by clicking on this image:

Sweet home.

 

We are very thankful to be home sweet home. Okay, maybe we aren't thankful for the mounds of laundry and unpacked suitcases, but we are so happy to have left 913 behind and to be back in our own  space. 

Watts' white blood count was 1.0 yesterday morning so we packed up early, Michael headed back to Greensboro for work, and the kids and I were discharged around 12:30pm. We will continue monitoring him at home for any signs of fever and continue giving him neupogen shots until his ANC makes a full recovery...hopefully soon!

Thank you for your prayers! We are thankful, very tired, and so glad to be home.

A little letter.

Dear Wednesday, looks like you'll be the day we break out of here. Just waiting on doctors to confirm. Dear babe, you are a rockstar dad. Thanks for your joy and strength and the way you selflessly lead. Some days I just watch you from across the room and mentally take pointers on how you love and care for our babies. And my heart gets all fluttery too. Dear Pipes, you are amazing. What a delight it is to be your mommy! Dear Watty boy, you are strong and resilient and the funniest little guy around. But, no more fevers, okay? Dear Brenner nurses, you all are the best of the best and care for us so well. We love you all. Dear home, absense makes the heart grow fonder. Cannot wait to be back inside your walls.

*Letter format modeled after this. Awesome blog.

Still here.

Well, we are still here... Watts is fever free and cultures are negative, but his WBC made no movement from yesterday to today. He squeaked up a little bit on Monday morning and we were hoping that it would be enough to break us out of here. There is some concern on the attending doctor's part, however, that as his ANC recovers, an infection (that might have caused the fever) will emerge. We definitely want to do what is best for Watts but it is also maddenning to be here for unscheduled time. This attending doctor is also a little notorious for being very conservative and cautious, so we wonder if another one of our doctors would have already sent us home.

While we wait, we have been doing a lot of playing, coloring, getting creative with hide-n-seek games, climbing up on the couch and jumping off onto a mattress (Watts is a little dare-devil), reading, doing art, and trying to convince Watts that watching the Disney channel is fun. Michael's been working out of the cafeteria and Piper has been an absolute trooper hanging out with me and Watts. 

Pleae continue praying for Watts to remain fever-free, for no infection to emerge, and for counts to recover asap. Specifically, we need a 1.0 WBC to get us out of here. Prayers for our sanity and extra doses of patience are also apreciated.  

ER Update

Watts had a low-grade temperature most of the day yesterday. This is not abnormal for him when he has low counts but I was still keeping a pretty close eye on him thoughout the day and checking in with the on-call doctor periodically. At around 3:30am this morning, we found that his temperature was close to 102. Although that this could still be caused simply by his counts being so low, there is no way to know that and meant a trek to Brenner.

Side note: A fever with neutropenia is an automatic admit. here at Brenner. With neutropenia, the doctors want to catch a virus or infection at the very, very beginning stages before it becomes something potentially dangerous. While Watts' immune system is trying to recover from the last round of chemo, he is particularly vulnerable...even a brief fever could indicate that a full-blown staph infection or virus is brewing. Until his ANC recovers, he has no real way to fight back and his doctors want to take every precaution...as do we.

By the time Watts and I got to the ER, his temperature was back down to around 100.5. They accessed his port, sent off blood for a plethora of tests, and did a weird xray of his lungs [Unlike all the ones he's had before where he sits in a funny seat, this time they put him into weird open tube with his arms strapped over his head and rolled him around to different positions while they took the xrays. He yelled like a banchee and I sang songs to him from behind the protective screen. Fun times.] They confirmed that his ANC was still at zero, he needed no transfusions, and they started an antibiotic (Ceftazidime). By the time that they came and got us for the dreaded wheelchair ride upstairs, Watts had perked back up and spent the masked ride waving at the random doctors and nurses and making grunting sounds to try and get the nurse to push us faster. 

Since our ride upstairs, Watts has remained in good spirits. Although we are "on contact" (meaning Watts can't leave the room and everyone has to mask and gown up to come in), Watts only has to be hooked up for 30 minutes every 8 hours to get his antiobiotics. The rest of the time he can run around the room, climb on the couch and wndow sills, and be his normal active self. 

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Update:

We've just gotten the results back that he does not have pnemonia or the flu (wohoo!) but only has a Corona virus (a type of common cold). This virus could be weeks and weeks old and still test positive (which I think it is due to a lingering cough and nasal discharge), so there is no way to know if that is what caused the fever or not. Tomorrow morning (Monday) we will get the first round of results from the blood cultures to test for blood stream infections.

So, what happens now is that we will stay inpatient until four things happen: 1) He has to stay fever-free; 2) he has to have negative cultures (the Corona virus doesn't matter or delay things at all); 3) he has to appear well; and 4) his counts have to recover. His counts could recover tomorrow morning or possibly days from now... until then we will stay here just to be safe. 

Although we would much rather be home right now with our kiddos, we are thankful that Watts "looks so good," as everyone seems to say, and that his fevers have already subsided. Our cup overfloweth.

Fever and ER

Watts and I made a trip to the Brenner ER at around 3:30am for a fever... I'll give more details when my arm isn't trapped under my sleeping son but Watts is doing great at that moment. We are admitted and now awaiting the results of a number of tests.