LP update.

Watts did great for his lumbar puncture and has started on his steroids...three doses down, seven to go! Thanks for the prayers.

Lumbar Puncture today.

Quick update this morning... Watts' counts looked good yesterday (ANC 750, PLT 300, HGB 10) so we are heading to Brenner in a few minutes to start Continuation II (aka Maintenance), our last and final phase of treatment, which will last over a year. If all goes all scheduled, Watts should be sedated around 8am for his intrathecal chemotherapy. He will also get an IV push of Vinicristine or Methotrexate, I think. I can't check right now because I am hiding from hungry Watts who can't eat anything before his procedure. Whenever he sees me, poor boy, he starts signing to nurse and can't understand why I'm saying no. It has to be weird to him, because 99% of the time I'm trying to coax him to eat. Ha!

When we get home later this morning, hopefully, we will start the dreaded steroids. Ugh.

Thank you for prayers (in advance)!

Me and my boy on Sunday.

A prayer on Mother's Day.

I'm up early with my boy and Elmo is on in the background, which is a joke really because I'm much better entertainment as a jungle gym. I sip my coffee and Watts periodically climbs onto my lap and smushes his face up against mine. Snuggles help greatly with the grogginess of the early morning hours.

It's Mother's Day today. My little family celebrated me on Friday so today is just any other day which I'm completely fine with because this holiday seems silly to me anyway (so rote!). 

Silliness aside, however, this morning my heart feels heavy for many. Mother's Day for a lot of women, I think, serves as only salt on the wounds of loss, of fear, of desires unmet. This morning I want to remember the women who are hurting and missed on this "holiday"....

For the empty arms of mamas whose babies have left this earth too soon... There are simply no words to say. Lord, hold them close this morning.

For fellow mamas of sick babies whose hearts fight daily with anxiety, exhaustion, and fear...Lord, give them, us, peace this morning.

For the aching wombs of women longing for children, whose infertility journeys are long and arduous and stretch before them without clear hope or promise...Lord, be near to them this morning.

For the single women who long for their own families, their own babies...Lord, be close to them.

For all the women blessed and challenged to be on this rocky road called motherhood... Lord, gently lead those that have young.

A week later.

It has been a week since we were discharged from our last fever scare and we are still very, very thankful to be home. Unexpected hospital stays are a bit rough on our little family, so this week we have been trying to re-group, take some long walks, work in the yard, and catch up on sleep. I think that I am breathing a bit more normally now and am not quite the nervous wreck that I was last week at discharge. Maybe :)

Watts is doing great. His counts shot up on the neupogen this week so we discontinued the drug and are hoping that his counts are still hovering in a good range. We will officially check them on Monday and, if all looks well, will go to Brenner for a lumbar puncture and chemo on Tuesday. This will mark the officially beginning of Continuation II (aka maintenance).

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I wish I could figure out the right words to accurately describe this little guy. When he was first born, we thought for sure that he was our laid-back little one (especially compared to our firecracker, Piper) and he was as a newborn/young infant. It turns out we were wrong, though! As Watts has gotten older and has moved past the more intense part of his chemo treatment, his wild, hilarious personality is coming out more and more. This boy is a hoot! For example, as I ran a quick errand with the kids today, I happened to catch Watts' eye when I glanced at the rear-view mirror...without missing a beat, he tilted his head, stuck out his tongue, and made a goofy face back to me. And then continued to make crazy faces for the next ten minutes straight... of course egged on by Piper's and my laughter.

We have just loved getting to see Watts actually feeling a little better and getting to know his goofy, precious little self. 

Other newsy updates on Watts:

• These days, he is saying new words almost everyday. Today, he said "squirrel".
• He is eating better. Current favorites are bagels with cream cheese and scrambled eggs. We are dreading the start of his appetite-zapping chemo drug, 6-mp, but are enjoying his appetite while he has it!
• His hair is falling back out...for what will hopefully be the last time ever. 
• He is learning how to take his daily medications orally and is doing great with the transition. The very first time we gave him his meds by mouth, he threw them up; this morning, he took them without protest! 
•  He is very much a mama's/papa's boy and wants to be with one of us at all times. This seems to have gotten a bit worse after the last hospital stay, which is understandable, and makes for some trickier days at home. This could definitely simply be developmental, but also seems linked to hospital stays. Hopefully he'll work through this as we get further into maintenance.
• Watts' favorite toy right now is a plush monkey from the nurses and his favorite book is Dr Seuss' How The Grinch Stole Christmas. We don't really know why, but he will sit through the whole entire book and ask for "moe [more], moe, moe!" as soon as we try to put it away. Funny boy.

Home!

We are home. Hallelujah! Watts' ANC scooted up a little bit over night and around 1pm the doctor surprised us and generously decided to send us home. 

The next couple days we will be keeping an even closer eye on Watts and giving neupogen shots to help his WBC to recover more quickly [under 500 is severely neutropenic-- he is currently at 80]. And just in case, we've already repacked our hospital bags. 

Thank you for the prayers over the last couple days. We are so, so thankful that our boy is back to feeling like himself. 

Another Brenner day.

This will be short because Watts is asleep on my chest, but I just wanted to update and say that Watts is doing great. His energy level is picking back up and he has been afebrile for 24 hrs. His neutrophil count is still at zero but his monocytes jumped up over night (they tend to be the first to recover) so there is a chance we could go home tomorrow if his neutrophils decide to follow suit. Most likely it will be Sunday or Monday, though. His platelets and hemoglobin have dropped but have not required transfusions 

We will go home and keep Watts isolated and on neupogen until his counts make a full recovery. I can't wait! I love this hospital and the staff dearly but I am ready to take my family and break out of here.

Dr McLean told me today when he rounded that our family seemed like we were "not only surviving but thriving" in the midst of this cancer marathon. Sweet, encouraging words to be sure, but the image I had in my head, I told him, was of our kids thriving and running ahead of us, and Michael and I hobbling and limping behind. Ha! Lord help us, it is going to take Michael and I years to recover from the emotional and physical and mental strain of the last year. 

Yet I wouldn't trade it for the world.

 PS. My superhero mother is back here in Winston and has saved the day by helping us with Piper, bringing up food, and giving me a hand with Watts while Michael works. Thank you, Mama! 

Morning update.

It's 6:30am, Piper is asleep on the mattress on the floor and Michael and I are sipping coffee from our contraband coffee maker and taking turns holding our little early bird. 

Watts is doing well and seems to feel like more like himself this morning. The night had multiple wake-ups but was overall a MUCH better night than the night before. His fever spiked to 101.4 (not on Tylenol) so cultures were done on him again but a dose of Tylenol helped cool him down enough to go back to sleep. 

Yesterday his first round of blood cultures came back as negative at 24 hrs which is very, very good. The virus panel they ran on him came back as positive for the Corona virus (a very, very common cold) which may or may not be the cause of the fevers. This is the same virus that he had 12 weeks ago when we were hospitalized during Watts' neutropenic days but is most likely a new strand that he picked up in the last couple days. The doctors guessed he probably picked it up in the hospital. Watts will stay on the Ceftazidime (antibiotic) for a few more days just in case "they are missing something."

I am very, very thankful... Michael and I both had some flashbacks to the early, pre-diagnosis days from a year ago during the worst of these fevers and are very thankful that this virus/infection/neutropenic fever seems to be under control. We know that this could have gone in a different direction.

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As we near our one year cancer anniversary and are getting close to the start of maintenance, I have been thinking through the future of this blog. I will obviously keep it and post with any medical changes, treatment status, etc but I also am cognizant of not wanting to clog up people's email accounts with a plethora of pictures of my adorable children;) Thoughts? I actually do not really have a clue of who reads these posts other than my family and close friends...