Changes ahead

Dear Madeline,

Well, that was quite the long day, wasn’t it? I think we managed to arrive at the Johns Hopkins at about 7:30 this morning for your morning radiation treatment and didn’t manage to get home after your pediatric oncology hospital clinic appointment until about 4 this afternoon. In between, though, we did skip out of the hospital and I gave you and Mom the grand tour of Baltimore to pass the time. (I think we managed to pass through the majority of notable places, hot ZIP codes and wastelands alike.)

You haven’t been taking too kindly to these morning radiation appointments and the accompanying restriction on not eating after midnight the night before. The radiation oncology team needs you under anesthesia so you don’t wiggle around or change positions while receiving the radiation. Trust me, it is better this way. That doesn’t mitigate the perverse irony, though, in that the intentional damage to the area where your giant tumor was is triggering your body’s healing response, which in turn requires a great deal of energy (and thus, a great deal of eating to fuel the healing). Your treatment is, in short, making you very hungry and we need to deny you some of your feedings in order to ensure your treatments are as effective as billed.

House of thirty-something flavors? Let's hope not.

Dear Madeline,

Apparently, Mom and I are awful, awful parents. Doctor Obvious swept in to rescue us from our terrible and misguided ways yesterday by informing us that you really should be eating. I want you to live life unjaded by morons like this guy, so I'll spare you what I really thought about that guy and instead say that I was a little frustrated by the remark.

That remark, though, does mirror our concern for you. The doctors won't let you go home until you eat and poop normally. Sweet pea, we want nothing more than to unhook you from all of these tubes and machines and to take you home where you belong. 

The long road

Dear Madeline,

It's been a few days since I've been able to writing to you. Maybe that's been a blessing; it has been a challenge for us to accept some of the developments that the last few days have brought. It is very easy to develop a sort of tunnel vision right now, but I know that these are but bumps in the long road we're travelling.

On Monday, Mom and I found out that your cancer had been re-staged and that you would need some radiation treatment on top of the chemotherapy. At least we also learned that the lead for your had been officially given over to the oncology team from the surgical team. 

On Tuesday, we met with the radiation oncology staff to discuss what treatment would entail and learning that you would need any number of treatments greater than 1 left us feeling a little deflated. Later on that day, we also sat down with oncology to talk about the treatment plan (28 weeks of chemotherapy), the chemotherapy drugs, research and more. We also talked about potential side effects. I don't think I want to dwell on those. Mom and I can talk with you about them one day when you're older. These days, it's enough for us to know that all of this treatment is designed to save your life. Tuesday was a heady day, almost surreal, and I don't ever wish to experience a repeat if that day.

Storm Clouds and the Silver Lining

Dear Madeline,

I know not where to begin. Your suffering today was immense and I was unable to do a thing to help you beyond holding you in my arms. I can't say I've ever felt so impotent and so emotionally shredded in my life. We can only guess what could be causing you such agony today. Is it your port site? You've had some bleeding from the incision area around it, but the port itself is fully functioning. Your primary incision seems to be healing nicely and not causing you much grief. Could you be starving? You've refused any form of bottle for about a week, though the use of pieces of medical equipment looking like a bottle has resulted in tears, so maybe you've justly developed a fear of the bottle?

I took a few walks today to try to collect myself, said many prayers and shed more than a few tears for you. I've been struggling to figure out what this all means, wishing I could see what God has intended as a result of your suffering today. I trust that His plan will unfold and be revealed in time. I can say though that I saw a small sign that God has heard my prayers, even if the action plan for answering them is still developing.

This really suctions

Dear Madeline,

It's been a full week since you were admitted to Hopkins Hospital   You've had some ups and downs, but I guess that's the way it goes for cancer survivors and I need to learn to expect and accept them both.  Your ups and downs lately seem to center around this darned NG tube.  You did well with it last night and all day today.  Your only major gripe today is that you wanted to be held... a lot.  No one here would refuse to meet that demand. 

You've had another rough couple of hours, though.  As the day wore on and the afternoon began to surrender to the evening, you became vocally agitated.  After giving you a few boosts of your pain meds, we ruled out pain as the reason.  It wasn't too loud or too bright, and you were otherwise cozy in my arms.  Then you kicked that cry in, the one that says "I'm so hungry!! What's a gal got to do to get a meal around here?"