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!"