Holding steady.

Watts' hemoglobin level was up a teeny tiny bit so he didn't have to have a blood transfusion today. I cried in the parking lot I was so surprised and happy. His ANC was also up a little bit too (130).

I am thankful for no fevers, no blood transfusions today, and some time at home before our long stay.

*Although I would happily give him a lollipop, that is a q-tip he's chewing on in the pictures. Yes, a choking hazard, I know, but he's happy.

Short update.

We are still home. Watts just started eating again and sleeping better, thank goodness, so we are just waiting for his counts to come up. His ANC is currently still at zero (pictures of him playing in the dirt were taken when his counts were still high, fyi) and it looks like he'll need a blood transfusion tomorrow. His hemoglobin level was borderline today so we are going to check again tomorrow morning before heading into the weekend. It is a long ordeal (6 hours+) for him to get blood so we are hoping that his level will rise just a little bit overnight.

We are very thankful that he is fever and infection-free so far! Now we just need a few more good nights of sleep so we can stop feeling like zombies :)

Zero.

Watts' ANC is zero, as we expected, so we are holed up and waiting for his counts to start recover. He doesn't need any transfusions at this point but we will go to Brenner on Thursday to see what his hemoglobin and platelet levels are doing. If they are too low, we will stay and he will get some transfusions.

After discharging from the Etopside/cytoxen stay, Watts stopped nursing which has led the doctors to think that he has some sort of sores down his throat from the chemo. Sleep has also been very broken due to nausea and possible pain. Despite the side effects, Watts has been loving being home and is generally good-natured if he has mama or papa close by. And he hit another developmental milestone: he stood for about twenty seconds today! Our little trooper.

Please pray that he stays infection-free while his ANC is so low. 

Please pray that he starts eating again. Thank goodness for the ng tube or we would probably be back in the hospital.

Please pray that Piper and I don't lose our minds as we are isolated in the house. Ha! But seriously.

Home again.

We got home yesterday right on schedule which was really strange and wonderful. We are so use to delays and horrible side effects that it felt a little surreal to leave at a decent hour and to come home with Watts feeling semi-normal. He did have several bouts of nausea yesterday that resulted in several outfit changes for both of us, but overall he seemed (and seems) in good spirits.

Next up on our protocal/road map is several days at home while we for counts to bottom out and then recover. After they reach a certain level, we will head back for the 21 day High Dose Ara-C stay. We have been told that it might take longer than 8 days for his counts to recover so we aren't sure when our start date will be. Early November sometime.

Today we start on Neupogen shots to help his white blood count recover faster.  Neupogen is one of Watts' ubber expensive medications. Because of our prescription plan (that we've maxed out) with our insurance company, the social worker and I had been told that Watts' neupogen shots would be $300 a week. When she called with our prescription for these next two weeks at home, she was told that it would be $800 a week. Because she is amazing at what she does and an advocate in every sense of the word, the social worker contacted the pharmacist at the company and was given a completely different quote... of $120 a week! We have no idea what changed or whether we will get that quote again, but the social worker did a little happy dance in the hospital room. I am very thankful...both for a cheaper price and for people that will go to bat for us. What a gift. 

This picture was before the last hospital stay but was too cute not to share. Thanks Anna and David for Piper's bike. Watts loves it too. 

And a shot from today...

After five months of hanging on to his blonde locks, Watts' hair is almost gone. He had some long "bangs" in the front (see bike picture) but was completely bald in the back, prompting us last night to give him a hair cut and even things out. I am obsessed with his bald head. Watts can rock any hair style.

Evened out front.

Bald back of head.

Day 4.

 Watts is doing great. Side effects have been minimal and seem to mainly make him sleepy. After weeks of broken, sleepless nights, I am not complaining about; I'm more rested now than I have been in ages.

Every time we make it through a hospital stay with minimal side effects, it is such a relief. With less than 24 hours to go, we are thankful. Very thankful.

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We met with a child life specialist yesterday and she evaluated Watts to see how he is doing developmentally. She used the Denver test on him and found that Watts is mostly on track with where a 15 month old should be. He is a little behind with his gross motors skills but that is to be expected given the frequent hospital stays and harsh chemo. The physical therapist also came by (Watts hasn't worked with one in a couple months) and, after working with him, said that she was really happy with how Watts is doing. Infant ALL kiddos can have some developmental delays due to the aggressiveness of treatment, so to get confirmation that he is on track is encouraging. Honestly, I can hardly believe that Watts has continued to develop in the midst of all of this. Amazing, really.

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For my own sake, since I have neglected our family blog for so long, here is what he is doing at 15 months:

Babbles constantly and has said the following words: ball, bubble, mama, dog, and no. Although mama and no are the only words he is using consistently. Also seems to be saying "what is that?" [Child Life Specialist was very impressed with his communication skills.]

Crawls, pulls up on things, cruises, and will stand for about two seconds.

Is good at communicating what he wants through grunting and pointing.

Has the craziest, goofiest facial expressions.

Is obsessed with dropping small objects in containers.

Is very social and lights up when new people come into the room.

Has a love/ hate relationship with Piper. Playtime with her usually ends with Watts screaming "noooo!" until his whole body shakes.

Things he loves: anything to do with music, animals, the peek-a-boo game, being outside, loud machines (esp. helicopters), and electronics.

Loves to dance and has some hilarious moves where he shakes his elbow and bobs his head.

Loving on his puppy dog.

Watching music videos with Papa.

Watts, we couldn't be more proud of you. 

You are our little warrior boy and we love you more than you'll ever know.

Extra wide window sill?

Definitely a playground.

L

Day 2 (Etopside stay)

He slept last night. Oh ironies of ironies. To sleep better in a hospital than at home says a lot about how often we've been here and, of course, the energy-zapping chemo coursing through his veins. We are 20% done with this stay; here's hoping all goes as scheduled and we leave as planned on Friday. 

Watts and I are trying to pass the morning by throwing things across the crib and listening to a little Indelible Grace. Keeping him off the floor is like wrangling a small angry tiger. He wants to crawl, wants to mess with his lines, and wants to follow Piper out of the room when she leaves. Despite the restlessness, he is doing well so far with the chemo with no detectable side effects. We'll start back up in a little while. He is getting two hours of Etopside, thirty minutes of Cytoxan, and four hours of the rescue drug, Mesna. We'll do the exact same thing for all five days.  

He is asleep now in my arms. Chemo is going. Doctors have come and gone.

I long to not be here. I long for all to be well in Watts' body, for cancer to not exist, for our days to be filled with park trips and play dates, and to not have to gather hair from my son's bed. As I shuffle past so many aching families in the halls of this floor, I long to make it all go away. Some stories I know, most I don't, but the weariness and grief I can see all around me. It is all wrong, really. All terribly, terribly wrong. 

This aching broken world, what hope is there in it? Death is inevitable, it haunts the healthiest of us, and ultimately strips us of all earthly loves. We walk through our days not knowing what tomorrow will bring, not knowing the number of our days. How does one live in a place of such fragility? How does one not break under fear of the unknown, the pain that inevitably lies up ahead?

We were made for something more. A broken Eden has us all breathlessly waiting and crying out for His return, for our true home, where all shall be made right. Cancer and death will have no place. Aching hearts will be filled. He will be there.

In the meantime, as we all trudge through these weary days, each of us facing our own challenges of sorts, of this I know: God is for me (Psalm 56). He rides the storm, holds me up in the darkest hour, and gives meaning to the bleak days. Oh Lord, you have been good to me. Come quickly.