Wednesday, May 5, 2010

my guy

hit his 18-month milestone yesterday.

We made cookies to celebrate. I didn't intend for Reuben to help, but he was doing some serious tiptoe peeking, so I brought him a chair and let him help with measuring and stirring. He was crazy-erratic, but focused. I rewarded him with his first lick-the-beaters experience and it was intense. Cookie dough in the eyelashes, my friends. He was blown away by the awesomeness (new amber teething necklace just found in a package from Sara Z. The girls are in love with him in it).In other Reuben-related news, our school is staging a mini Relay for Life next week, and asked to be "Reuben's team" this year. I just ordered a big batch of these buttonsto give to each child on the day of the walk. I was looking for something, like Marian's superstar and shine buttons, that would be special to Reuben, but apply to each wearer as well. Audrey and I were experimenting with lines from our favorite Justin Roberts songs, but when I saw this on one of his new summer outfits, I knew it was the one. I especially like it for this event: a beautifully ragtag group of elementary kids working together to do (yet another) something bigger than themselves.Kudos again to Sarah of felt and paper, my button girl. She worked up the above (no extra charge) much-cleaned-up version from my literally cut-and-paste, photographed at night mock-up, even downloading the font I used to add the border text. Her prices are reasonable, and she is procrastinator-friendly fast.We had a bad scare last week that, along with an over-scheduled weekend, wiped me out. I'll preface it by saying that it was a false alarm, but a very dark 24 hours for us. While scrubbing him up in his bath last Wednesday night, I found a new lump in his right armpit. Frozen, I helped get the girls in bed, told Nathan, then wrote this e-mail:

I felt a new mass under Reuben's right arm in the tub tonight. The right shoulder was the area previously affected, but this time it is more on the arm side. It's about the size of a large shooter marble, maybe an inch around--hard and round and firmly in place. It kind of recedes into his armpit when his arm is down; it can only be felt when his arm is raised. I'm not sure how long it has been there; my mommy-checks had been more in the area around his scapula and torso side of his armpit, though I do lift him and touch him all the time because I'm his mama and I think I might have noticed it earlier. My guess, then, is that it is fast-growing like last time (I could chart daily progress beyond my Sharpie lines), and quick action is important.

I'm calling Hershey oncology to try to get him in to see someone tomorrow morning, but I'd like to have him seen and MRI'd at CHOP and re-evaluated for surgery again as soon as possible, so if you could advise me of the best approach, that would be much appreciated.

Because this is not a happy evening & action always feels just a little on the sane side of desperation. Weirdly, it's almost exactly a year later (I first took him to the ER on 26th, 2010). Stupidly, we've made all sorts of summer plans.

I called my mom to rally the troops for me (I was very far from being able to do any phone calling myself), and she sent out this:

Dear Family,
I tried to get hold of everyone last night, but in case you didn't get my message, Valerie noticed a little lump under Reuben's arm (the same side as before) when she was bathing him last night. She contacted her doctors and was going to head to Hershey this morning to have it checked out. As things turned out, the surgeon from Philadelphia who is headed out of town for several days, worked them in today. They are on the road to Philly and Reuben will get a biopsy today and an MRI in the morning tomorrow. Valerie feels it is a blessing to be able to get things rolling so early, as this (if it is a tumor) seems to be a very fast growing deal. I'm hoping all of us can exercise our faith and prayers in their behalf. As a visitor to your homes, I know that Reuben is frequently in your prayers already and I am thankful for that. I think it would be great to include him and his family as the object of our fasts this weekend too. Valerie will let me know the details as she learns them and I will pass them on to you. She is a busy girl today and probably will not be able to talk much to us, so I will try to keep everyone informed. This mailing goes to Valerie and Nathan too--so please let me know if I got anything wrong. Know that we all love you and are praying for you and want to help any way we can. I wish you all well today. Thanks for being such a good, strong, supporting family. Love, Mom

I heard back from my Hershey oncologist that night, willing to come to clinic just to see him the next morning, and then from my Philadelphia oncologist and orthopedic surgeon's nurse. I just drove straight to Philadelphia while they worked a bit of coercion to fit Reuben in that day for evaluation and MRI in preparation for a biopsy Friday morning, which the surgeon was coming in especially to do before he left for a couple of weeks of conferences that afternoon. I was so very heartened by the warm support and personal response I got from our ever-fantastic doctor team. I know I am very very lucky to have them.
Turns out that what I was feeling was bone. There is so little flesh left in his armpit that his humeral head, unsupported, kind of dips down when his arm is extended. His surgical scar has flattened a lot in the last couple of months, so his armpit must have changed enough that I could feel it easily. It's still a little disturbing that he has bone hanging out of his armpit, but we were all doing a lot of grinning. Our good orthopedic folk are crazy-impressed with Reuben's fine reaching skills, as he shouldn't be able to have the range of motion he does with the muscles he does (or doesn't). I am 1/2 good and proud of him and 1/2 worried for that arm. But, so far:


More updates to wrap up the day from my good mama, further evidence of her stellar mothering work. I have a fine fine family. A nice thing to reflect on, it being Mother's Day week and all. I want to write "Stronger than you Think!" here, too, but I already knew these Frandsens were/are powerhouses.

Hi family,
I just talked with Valerie. She is in Philadelphia and has just seen the doctors. After their examinations, they think there is a possibility that what they are feeling could be bone. They decided to do the MRI this evening and then if it is indicated, they will do the biopsy tomorrow. We are glad for this ray of hope. I guess with the surgery he had in that area, it makes things feel a little different. The MRI should be very helpful. I will write you all again when I hear the MRI results from Valerie. Keep praying. Love, Mom

and (subject line: "Hallelujah!!!!!!")

Hi Family,
Valerie just called with the MRI results--the lump is bone! The orthopedic guy talked to her and they are confident that what they are feeling is bone that seems a little weird just because of the surgery in that area. She said all his doctors are thrilled and amazed by Reuben's range of motion in that arm. He is healing much better than anticipated. So---blessings all around today. Valerie said to thank all of you for your prayers. She has been able to feel calm and do all that was needed and knows it's because of all our prayers. I am so happy. Feels like a huge weight has been lifted out of my stomach pit. Love, Mom


nweames said...

When I saw the picture of Reuben all I could think is he looks so much like your girls (in a boyish way)! And those eyes!!! TOO CUTE!

I'm glad things turned out well. What a scare!

Elise said...

So glad Reuben's doing good and it was just bone!! :)

What a cutie!

Kathi D said...

I wish for you and your family nothing but glowing good health from now on! You have more than paid your dues on that score.

liz r. said...

I am so glad the news was good. What a scary week it must have been.

Love the cookie-batter photo!

Trisha said...

I am so glad that everthing turned out okay. Look at how cute Reuben is. Can you believe that our babies are eighteen months? Time goes by so fast. Take care of your sweet little family. We think of you often.

-The Preece's