Tuesday, May 12, 2009

Today's CT scan showed lovely clear lungs for Reuben. Cancer free! Metastasis to his lungs was the most likely spread, and we have been spared that at least. I have forgotten, with this medical drama, to share the good news that Marian's lung CT scan (on the same day as Reuben's sad MRI) looked marvelous--more clear than last year. I'm a happy mama. The radiology report on his bone scan had not yet been completed when I left the hospital this evening, but the oncologist didn't see any new tumors.

Although the results from the samples sent to Columbus for chromosomal testing probably will not be ready until next week, we (oncologist, orthopedic surgeon, self) have decided to go ahead with prompt chemotherapy, assuming a confirmation of the preliminary infantile fibrosarcoma diagnosis. Tomorrow morning at 10:00 am, Reuben is scheduled to have surgery to place a port in his little chest, and we will start chemotherapy either tomorrow afternoon or Thursday morning.

When Reuben was a few weeks old and I was already desperately in love and feeling a quiet joy that he was so lovely and healthy, I traced a finger on his chest, marking each place he did not have one of the scars that were so familiar to me on his sister. No lung biopsy. No drainage tube between his lungs and chest wall (so painful). No Nissan fundoplication. No broviac catheter. No small incision to slide it into his heart. No port-a-cath, or its associated guiding incision.

3 of those we will have after tomorrow.

Reliving part of today's conversation with our oncologist while I dabbled in the bathroom this evening, I caught a repeat of the expression on my face when he was talking about amputations (not something we anticipate). Um....this mama was not so stoic as she thought.

Here's a link to the abstract for the most comprehensive study of infantile fibrosarcoma, if you're so inclined: http://www.ncbi.nlm.nih.gov/pubmed/12468912
I like it because it refers to "this rare and curable disease" and "negative margins" (cases wherein the tumor disappeared with chemo and without surgery) and "alive with no evidence of disease 8 and 18 years from diagnosis." All of which I so very desperately want.

Reuben will be "inpatient" (staying in the hospital) for a few days starting tomorrow, and I'll update if I have access. I so hope I can also find a way to upload a few photos, but that may be greedy :).

I know I'm still in my careful place (haven't cried yet), but all I can think of is how crushed I am that we're missing Audrey's birthday party on Saturday. Though, unfortunately, not as crushed as she is. If you're local, please call Nathan and ask how you can help!

Now I'm going up to my room to watch American Idol, then give my baby a bath in the lovely calendula/chamomile baby wash Meg sent me that makes him smell just right. And not like a sterilized hospital. Oh, my baby!


Snippety Gibbet said...

You really got to me when you were talking about where Reuben DIDN'T have scars. Such a sad thing to even enter your mind. I'm sending you all my good thoughts.

On a lighter note, I thought of your family and a "pregnant" family of cyclists we know. Check out this bike: http://bikehacks.com/taga/ Tell your hubby he can get a new bike if it is this one.

sgraham said...

Oh Val, I admire you so much. I wish I had a "careful place" like you. I have cried with all three of your latest posts. I wish there was something I could do to ease your family's pain. All of my best thoughts and prayers are sent your way. With heartfelt love.

goat said...

Reading (bawling) through that, two passages from Romeo & Juliet came to mind.

First, Romeo, upon learning of Juliet's apparent death:

"Is it even so? then I defy you, stars!"

The second, earlier, when Romeo learns from Friar Laurence that he's been banished:

"A pack of blessings lights up upon thy back;
Happiness courts thee in her best array;
But, like a misbehaved and sullen wench,
Thou pout'st upon thy fortune and thy love:
Take heed, take heed, for such die miserable."

*explicative deleted*

ChristyLou said...

I doubt you'll remember me (we moved to Nashville in May right before y'all left), but I've been a ghost reader on your blog for several months now. I just wanted to let you know that I've been crying for you guys and saying prayers for you all since I read about Reuben. I'm so sorry that you are having to go through this. I thank you for your faith though, it strengthens mine as well. Love, prayers, and good thoughts are coming to you from Nashville! With love, Christy Grigg.

amd said...

Your family is always in our prayers. After reading your recent blog entry, it made me think of how silly I am being a whimp when it comes to going to the doctor. I have to schedule a surgery to remove my gall bladder stone that has been causing pain for me. With love and prayers from the South.

nweames said...

You and your family are constantly in our thoughts. I can only imagine how hard this is and I, as always, am struck by your bravery and strength. Thanks for keeping us up to date. We so wish we could be there to help, or at least attend what I am sure will be an amazing birthday party.

Tarrah M. said...

Wow Valerie, so sorry to hear that. Reading that post made me cry...such a good reminder of how trival some things are that bother me. Like Hannah crying in her carseat, life is so short and we need to enjoy every moment with our sweet children.

Thank you for being such a wonderful example, you and your family will be in our prayers.

Chris and Lisa said...

Oh Valerie, I don't want to sound like all your other commenters (is that a word??), but I probably will: we are (kids included)keeping you guys in each of our prayers. We fervently hope everything turns out okay. We love you guys!