Sunday, January 19, 2014

Happy boy.


Watts just toddled into the kitchen chuckling to himself and holding an uncapped marker. Amused, I followed him back into the hallway and found an original “art piece” on my newly painted walls. I turned and asked him about it and he started to laugh-- a good, deep belly laugh that bent him over in the middle and made him have to stop to catch his breath after a few seconds. Any words of reprimand slipped away and we sat on the floor and laughed about markers on the wall and giggled as we scrubbed them clean.

Watts is doing so well. After almost eight months of having high dose chemo coursing through his body, Watts seems to be coming out of a fog and feeling more and more like himself. It as if we can now see, truly see him. His little personality, humor, and stubbornness have always been evident but have been masked by the strong drugs in his body. Time at home has helped too, I’m sure.

His body is getting stronger. He walks and runs and talks and sometimes eats really well. He squabbles with his sister like an old pro; stealing her toys, smacking her in the face, and getting into the middle of anything and everything she is playing with. [It is important to note that she does the same to him.] He is also tenderhearted and frequently goes to hold Piper’s hand or give her hugs if she is upset about something.

I am obsessed with this boy, to put it mildly. He is a delight to this family and I am so humbled and grateful to be his mother.

 **I feel compelled at the end of this encouraging post to ask for the prayers not to stop! Although we have finished the most intense part of treatment, this journey is far from over. Relapse most frequently occurs in the second year of treatment which Watts will be starting in about 10 weeks. We are so thankful for how well he is doing and so, so hopeful for his future, but at the same time we ask for continued prayers for our warrior boy.

Thursday, January 16, 2014

Back on track.



This silly boy's counts recovered this week so we made a trip back to Brenner for IV MTX and his monthly synagis shots (to help prevent RSV during flu season). His appointment went well and he is gaining weight like a champ. We are starting back on 6mp (at-home chemo drug) today and will continue through this week. If he "makes counts," we will admit next Thursday for a 5-day stay.

 My goodness, I love this little guy!

Saturday, January 11, 2014

Sweet truth.


But you, O Lord, are a shield about me, 
my glory, and the lifter of my head.

 I cried aloud to the Lord,
 and he answered me from his holy hill. 

I lay down and slept; 
I woke again, for the Lord sustained me. . .

Salvation belongs to the Lord; your blessing be on your people!

Psalm 3:3-6, 8

Thursday, January 9, 2014

Low counts.

After having his ANC (absolute neutrophil count) hover around 3400 the last 4-5 weeks, yesterday we were surprised when it came back as 422. A drastic drop in a matter of a week, but nothing unusual for infants on 6mp (chemo drug). In fact, although I hate that he is now considered severely neutropenic and susceptible to a lot of possible infections (during flu season no less!), it is good to see that his WBC (white blood count) is being impacted by the chemo drug. If his WBC is getting hit hard, then hopefully so is any possible leukemia cells. We will just hunker down a bit more, mask up more frequently, and wash our hands more obsessively.

So, because his ANC is so low, we will be taking a week off of all treatment to give his bone marrow a chance to recover. No clinic, no IV MTX, no at-home chemo. It'll be the first week not going to Brenner in almost 8 months! We will recheck counts next Wednesday and restart back on treatment on Thursday if his ANC is higher than 500. 

In other news, Watts' hair is growing back. I surprisingly miss his bald head but also love the soft fuzz that is coming in all over. This hair will most likely fall out again during the next inpatient stay but who knows! The doctors and nurses joke that Watts must have great hair follicles, as evidenced by him holding onto his hair for so many months of intense treatment, so he might just hang on to it.

Hard to believe that this was his head about 7 months ago... just when we noticed him losing a little bit.



And now...




Okay, so maybe it is hard to see, but it is coming in... mostly blond with a few really dark patches.

If you think of Watts, please pray that he stays infection and virus-free, 
as well as the rest of us. Thank you!

Tuesday, January 7, 2014

Upside down.

Cancer has left its mark on me. Some days I'm not sure which way is up and which is down. Simple things feel complicated and I can't seem to remember to brush my teeth. Or check my email. Or switch the laundry. I cry sometimes for no apparent reason but the truth is, there are a million reasons.

7 months in. 12ish weeks from maintenance. The online Infant ALL support group that I am a part of is inundated lately with stories of relapses, mostly during the maintenance phase of treatment. The statistics support this. It is sobering to say the least. Watts looks good, IS good, but the reality that this journey is far from over is always present in my mind.

Where's the balance of recognizing and acknowledging the reality of the situation and not living in fear of what the next year might bring? I don't know. I am trying to learn how to do life again when all of life feels different, when the future is unknown. The future has never been known to me, but now I am living daily in the awareness of how fragile life really is... And how quickly all of life can be turned upside down.

Don't get me wrong, some days I am truly overwhelmed with gratitude for the smallest of things and outpatient life feels almost blissful, but other days, a lot of days lately, I trudge the muck and mire and make it to the end of the day by the skin of my teeth.

PTSD issues from the past 7 months? Possibly. Exhaustion? 100% yes. Trying to figure out how to return to "normal life" when nothing is normal? Confusing as all get out. 

Saturday, January 4, 2014

The first bath.


The first bath, almost three days post surgery. He was excited and did some initial splashing, then he panicked and clung to me.


From a standing position, he grew more confidant.


Drinking from a little cup was a highlight.
We have never really let him practice with drinking from a cup due to fear of his hickman getting wet.


Big sister getting in helped him a lot too.




Now bath times are a favorite and we have to pull him out kicking and screaming.

What a crazy thing to have bath times feel like a luxury and a blessing. We've come a long way on this journey.


PS. The bruises are from him being a crazy toddler and running into everything plus they were showing up more due to him being extra pale (because his hemoglobin was low). 

PPS. Bandages are now off!

Thursday, January 2, 2014

Oops. And transfusion.

Well, the last blog post from the 31st (not the thank you one) was accidentally posted so I'm sorry for the somewhat raw, unfinished post... I write a lot more than I actually post on here and most of it just sits as drafts forever, a place to dump thoughts and unfiltered feelings. I'm taking it down but If I ever finish it I'll repost it.

------------------------------------

We just started the IVIG transfusion and are getting labs rechecked because his hemoglobin level was extremely low. If they come back low again, we'll stay several more hours to get a blood transfusion. Convenient that we are already here though! 

UPDATED: hemoglobin came back the same (6.6, a 2 point drop from last week) so watts and I will stay for blood after the IVIG finishes. Long day.




 
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