Monday, December 23, 2013

Watts update (and surgery date).

Watts continues to defy the odds and seems to be thriving with these long weeks at home. Every day it seems as if we see more of his little personality emerging. He is extremely head-strong, goofy, and very affectionate with his mama and papa and sister. We love this kid.

Surgery: Watts will have surgery to get his hickman catheter replaced with a chest port on Dec. 26th at 7am. He was already scheduled to be sedated for a lumbar puncture that morning, so we are going to combine the two so he will only need to be sedated once. This is a routine surgery and recovery time should be brief. We are very excited for this surgery and cannot wait to give Watts a bath once his incisions heal! We are not, however, looking forward to the steroid week that starts that same day.

At-home chemo: We have noticed no side-effects to the daily chemo that we give him here at home. His counts continue to be good, which may actually lead to a dose increase once we get to the maintenance phase of treatment. We do not want Watts to be neutropenic and susceptible to infections, but we also want to see evidence that the chemo is impacting his white blood cells. Relapse can actually present itself in a sudden jump in ANC, so we want Watts' to hover right around 1000. At his last check, his ANC was 3400, which made us incredibly nervous until the doctors were able to review his results and assure us that nothing appeared to be abnormal.

Food-wise: He will have a good day of eating solids followed by several days of only nursing. There doesn't seem to be a rhyme or reason to when or why he will choose to eat, so we are simply trying to follow his lead and offer him a variety of foods in a variety of different settings. We've found that he may not eat cheerios in his high chair but will gooble them up if we put them in various places around the dining room.

Walking: This boy is on the move, all the time, everywhere! After only a couple days of taking a step or two, Watts started walking across the room. Now we are just hoping that he starts to develop some sort of sense of fear soon so we can avoid any extra ER visits.

Appointments: We are still going to Brenner once a week for chemo (IV MTX) and to the pediatrician once a week to check Watts' counts. He also continues to have periodic lumbar puctures.He also does daily chemo at home and a weekend antibiotic.

 Sleep: Watts' nights seem to be hit or miss... we consider it a good night if he only wakes up to eat and sleeps later than 5:30am. On bad nights, he is wide-awake in the middle of the night for a couple hours. We are living in a constant state of sleep-deprivation.

 We are so thankful for this boy and amazed by him as well. What a journey these last 7 months have been!


  1. These are delightful pictures of your toddling boy and precious ones of father and son! I'm so happy that you have had this time at home and have enjoyed his antics of "toddlerhood". Praying that you have a blessed Christmas celebration with your adorable little ones and that all goes smoothly with Watts' surgery on Thursday.

  2. Thanks Candy! Hope you have a merry Christmas!


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