Friday, June 20, 2014

Fever update.

Our Warrior-Boy is doing well. He is fever-free and seems almost back to his normal self. The doctors have no idea what happened to cause the high fever, but it seems the antibiotic worked and whatever it was is now gone.

After I catch my breath a bit, I will try to write a bit more.

Thank you all for you prayers and well-wishes.

Wednesday, June 18, 2014

Fever and ER Visit

After a hard round of steroids, we were hoping that we would have a few easy weeks before steroids start over again. Not so. Cancer and the intensity of treatment continues to keep us on our toes. Watts woke up from his nap yesterday with a 104 temperature and lethargic behavior. We immediately took him to the Brenner Emergency Dept. where he had in a fever of 105.

We are learning that Maintenance is a different ballgame than the past year of treatment. Every single time we've been to the ED before, Watts has been neutropenic and even a 100.5 is an automatic admission and days of antibiotics (neutropenia suppresses fevers so 100.5 could be equal to a much, much higher temperature). Watts' ANC was 2200 yesterday so we were not an automatic admit...even with how high his temperature was. They drew a CBC, got blood cultures, took a (traumatic) chest xray, and gave him fluids and a round of antibiotics that will last for 48 hrs. [If he was neutropenic, he would have had to have a different antibiotic that would have been given every 6 hours...hence part of the reason for auto. admit.] They also gave him Tylenol and watched him for a couple hours. It dropped his fever down and, after a couple hours and some fluid, his fast heart rate slowed down. We left the ED around 9:30pm last night and are now home to monitor Watts and, basically, wait.

His fever has stayed relatively low through the night and day...possibly because of the round of antibiotics, possibly because it's a virus running its course. We wait now to find out if his blood cultures will grow anything and we also wait to see what happens when the antibiotics are out of his system. We will go on Friday morning to clinic and check his Immunoglobulin (aka antibodies) level. If it is low, he will get an IVIG transfusion and it also might be part of the why he has gotten sick.

Please pray for our little Warrior-Boy and for our spirits. And for sleep too!

Sunday, June 15, 2014

On Papa's day.

To the man who has given his all to this little family this past year... Thank you, babe. To say that we all adore you would be an understatement. As we've traveled through the valley of Baca over the last twelve months, you have selflessly loved and served us, led us when the way seemed uncertain, and held up our weary arms when we couldn't stand any longer. Even through the chaos and darkness of the wilderness, our children have rested each and every day in your love for them and are at peace when you are near. Oh the sweetness when they gaze at you!

Although I would rather not relive this past year, I have encountered Christ on a daily basis in the way that you have loved your children. If an earthly father can love his babies with such utter abandon, how much more does our heavenly Father love us?

Oh, how He loves us.

Friday, June 13, 2014

Day 4 of the dreaded 'roids.

Watts and I are awake early watching some Thomas the Train and "feeding" Little People some cheerios [Watts thinks it is so fun feeding toys... Putting it in his own mouth is another story.]

This is a tough steroid week. Starting yesterday morning (on Day 3), Watts has just been a mess of tears, rage, and up and down emotions. Despite our best intentions, we can not seem to offer very much comfort. He's hungry, but is enraged if we offer him anything. He wants to play, but we can't seem to play to his liking. He'll get so angry and frustrated at a situation that his whole body will start shaking... and over something little like offering him an M&M that he requested in the first place.

Poor boy. And us too...but we are thankfully able to know that this is for his own good and is only temporary. Every day we count down the doses left for this round and even Piper knows about the "yucky Leukemia medicine that makes Watts feel angry." Six doses down, four to go!

Painting-- One thing that has seemed to have a calming effect on Watts this round.

Wednesday, June 11, 2014

Maintenance-- One month in.

Watts' make-up lumbar puncture went well yesterday morning. We were first on the schedule, as the babies always are, so Watts and I arrived at the clinic at 7:40am and were down to the sedation suite by 8:20am. It's a crazy thing to hold your child as they are put to sleep... and to do it more than times than you can remember. It becomes routine in a sense and yet is still disturbing each and every time. Watts is usually fine up until the last 20-30 seconds before he loses consciousness, then he panics and cries. In a room of three doctors and a nurse, I usually sing to my boy as he drifts off. The team will be quiet until I lay him on the table and then they resume their comfortable chitchat as they work. With another kiss or two and a glance back at my tiny little man on such a big bed, I leave the room and sit outside the closed door. There is a waiting room down the hall but when I'm by myself I like my seat on the floor; if I'm quiet enough, I can hear the murmur of voices and the beep of the machines. It is comforting to this mama's heart.

Our doctor is soon out and says that everything went fine and that he should be waking up soon. A few minutes later the nurse opens the door for me and we stand by the bed and wait for Watts to wake up. The anesthesiologist yesterday made small talk with me and remembered that he did a bone marrow biopsy sedation for Watts about a year ago. I remark that we have come a long way since then...thank God. Watts moves his legs a bit and starts to wake. The sedation team gives the okay and I scoop him up and tuck his floppy body in the Ergo before making my way back up to clinic. Another sedation done.

I wonder how many times he's been sedated in the last year? 
Someday I'll have to look back and figure it out. 

Loopy Watts post-sedation...and rock'n his new tube!

The rest of the appointment went well yesterday. His counts are transfusions needed but his ANC is a bit high (at 2000) for where they want it during mainetance. In two weeks when we check his counts again he might have to have his chemo dose increased. They want his ANC to hover between 500 and 1500 and will be tweaking his dose if it doesn't stay in that range. Cough-wise, the doctor also decided to start Watts on some allergy medication to see if we can clear up his chronic cough. Weight-wise, his dropped a bit (which we learned prior to the sedation) so we made the decision to put the NG tube back in while he was asleep. Hopefully this will eliminate some stress around mealtimes and help us boost his nutrition a bit. For some framework, Watts' weight is somewhere around the 45%...which is great, but we want to make sure that he doesn't drop out of that range so that if he does get an infection at some point we have some 'wiggle-room' to play with. His height is around the 1-2%. He is wearing size 9-12 month clothes...the same size that he wore when he got sick over a year ago. Sweet little guy. We finally went and bought him some new shorts yesterday that don't swallow him up!

Overall, Watts looks great and the doctors are please with how well he is doing in treatment. It is crazy to only go to Brenner every 2-4 weeks (and we sorely miss the staff) but is also so good for Watts to start having more of a normal childhood.

Thank you for the continued prayers for our "Atts," as he calls himself.

Saturday, June 7, 2014

A little update (finally).

Whew, it's been awhile since I've really updated! Life is busy these days with all kinds of gloriously normal things like play dough and painting and morning walks and refereeing the “loving” between an almost 2 yr old and almost 4 yr old. We also were just able to take a trip to the beach-- our first non-hospital trip for our little family of four! It was wonderful and exhausting, of course. No book reading or laying out when you have little ones:) Pictures to come.

Maintenance has been good to us so far. Watts’ counts are where they should be (mild neutropenia) and other than getting an IVIG transfusion last week, he hasn't had any other necessary transfusions or extra time at Brenner. On Tuesday, Watts is scheduled to go to Brenner for another lumbar puncture and IV chemo and he will start back on steroids.

Other updates:

-Watts is finally sleeping better at night. Hallelujah! One or two wake ups at night is much more doable (particularly after a year of him sleeping like newborn) and very good for my sanity.

-Developmentally, Watts is doing great. He is saying new words each day and physically is a wild man and constantly climbing (on everything everywhere!) and running. Each milestone amazes me. Some new words and phrases that he has been saying lately: "I did it!" "Go, dog, go!" "I don't know." "Did-e-on Atts (Gideon Watts)." And, of course, "Papa, Papa, Papa, Papa, Papa, Paaaaaapaaaaa!"

-Food-wise, Watts is having a hard time wanting to eat now that he is back on 6-mp (the chemo drug he takes daily). Almost every bite has to be coerced into his mouth, poor boy. We are going to wait till Tuesday and then reevaluate with our team whether we should put the NG tube back in or possibly start him on an appetite stimulate. Obviously we would love to stay tube-free, but it is also incredibly stressful trying to get calories in a headstrong toddler with absolutely no appetite.

-Watts' chronic cough lingers on. Despite having the NG tube out for several weeks now, Watts can not seem to shake his rattly cough and nasal discharge. Some weeks it'll seem to get better and then it will come back with a vengeance. I have read that some Infant ALL babies have these coughs till they are off-treatment but I would love for that not to be the case for Watts.

-Some of Watts' favorite things to do right now are to climb up on top of furniture, play with a bucket of water outside, play in the sandbox and put sand on his head, run around naked after a bath, run away from me at a store (or a park, on a sidewalk, or anywhere really), "race" with sister around the house, and play on any electronic device. Sounds like a normal almost two year! Praise the Lord. And I need some help learning how to discipline a wild baby man going through cancer treatment... Anyone?

As for Piper, she is her usual extroverted, creative, winsome, delightful self and fills our days with laughter, dramatic role assignments, and a whole lot of Lightening McQueen. Gone are the princess days and hello to a little red race car. We don't quite understand the obsession since she's only seen the movie twice, but we are trying to just go with it. If you hear Piper ask for Doc at church one Sunday, that would be me. Michael is Mater and Watts is Luigi 99% of the time.

As for myself, in these so-close-to normal days filled with such normal activities and seemingly normal healthy kids, my heart is a discombobulated slew of thankfulness, weariness, joy, and reoccurring cold fear that pops up during quiet moments. Darn cancer. It is still a dark cloud overhead, if I’m being honest. I am grateful to have made it this far in treatment and am savoring all these outpatient days, but Michael and I are truly just now catching our breath after a whirlwind year and are always cognizant of the fact that this journey isn’t over yet. This season is nerve-wrecking to a mama's heart, but there's good in it too, I think. I am having to learn once again how to grapple with my fears and to not have them control my days; to leave my tomorrows and their worries in the future, and to stay present in today. I am thankful for a God who is big enough to handle all my fears and who had promised to walk beside me. I know this to be true: He has been faithful to me and my family every step of the way.

Thursday, June 5, 2014


Sweet blessings. 

[I wrote a long blog post and then it disappeared. Grrr. In short, all is well. 
Thank you for praying for our Warrior-Boy even when the blog is quiet. Will try to post again soon.]
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