Bean's Journiversary...

I have been remembering last year's 22 days of sheer panic. The anniversary of this journey, to take a conjunction from a dear friend, our journiversary.

Each day that passes without a fever... I am thankful,
each day that passes without complaints of pain... I am thankful,
each day that passes with less complaints of stiffness... I am thankful.

I am thankful that we started this journey a year ago and not this year...
we have gotten two blizzards in the past week, the first 30 inches, and the second 2o inches...with 50 inches of snow on the ground this week I can't imagine what we would have done last year...spending those days in the hospital and not able to switch off with J, having one of us snowed in with the other 3 children.

Did I mention H1N1...last year no one knew of such a thing...this year our three other children would not have been allowed to visit Bean in the hospital...I don't know how any of us would have handled that one either.

See for your self below...

Children's hospital didn't have any Internet access and cell reception wasn't great either. So our time there was spent updating friends and relatives through facebook postings from my blackberry and a photo journal of pictures taken on that same blackberry. Some were posted to facebook...but most weren't "post worthy." I am now rethinking that and want to make sure I remember.

Bean's first night in the hospital...she did smile and she did have a rash.

View from of our room

"Dr. Will" - Bean's resident - playing Zingo with Bean - God bless Dr. Will wherever he is now, he truely made a difference during our stay

Bean's Room and set up - signs from friends at school, art supplies from the volunteers at the hospital, and a "ducky attention diverter" from B and family!

Grammy came and took some much needed naps together (especially so J and I could go home to the 3 other kids one night together).

One of two pairs of PJ's I will always associate with her stay...a picture of her knees that didn't "work"...a picture of my 5 year old who couldn't walk....in a stroller

Bean willed herself to sleep during her bone scan so she wouldn't need another "needle!"

The fantastic social worker that helped Bean and her fellow patient deal with all the procedures they were undergoing...and all the blood draws!

Playroom right next door to Bean's room where we spent lots of time.

Even when Bean had a fever and was too week to participate Belle, Bob and Puppy got to be close by - but loved the day the dogs came!

The playroom that Bean, when she was up to it, was able to have a regular playdate with her brothers and sister!

Bean's eye on her stay :
(including the other PJ's that I will never forget)

Bean and the family right after she had her bone marrow test to make sure she did not have leukemia...waiting for results....and then 2 hours later...

The sun set outside Bean's room as we packed up to leave....together, as a family.

Ironic - the sign as we were leaving....

I'm thankful that this journey started last year and not this. I hope the next anniversary is one that brings us closer to a cure.

Dear Dr H - what is it about Sundays....

Happy Sunday Dr. H, I hope this note finds you well.

I'm not sure what it is about Sundays...but Bean had a fever again this evening - and was complaining about hip pain and had trouble walking. Though she walked a mile each way to and from synagogue yesterday - and played outside with a friend today.

This is the third Sunday in a row that she had a fever and pain. I'm not sure what it is about.

As long as it is like the other Sundays and nothing more comes of it - we will see you as planned on Thursday at 10:40 am. I just wanted you to know what was happening here.

All my best,
L

And the fever returns...and the pain.

Did I speak to soon? At 3am Bean walked into our room...with 103.2 fever, back pain and knee pain. Is it related - is it something different?

Here is my e-mail to Dr. H.

Dear Dr. H,

Thank you for the e-mail and the follow up. The week went well. She started the naproxen on Monday - 2x per day. And here week went well.

Friday she had her 3rd dose of methotrexate and we dropped her dose of prednisone down to 20mg 1x day - from 25mg 1x day (as it had been 2 weeks).

10mg of methotrexate x1 per week
20mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day
250mg naproxen - x2 per day

Early this morning (Sunday morning) - 3am - Adina came into our room - saying her back hurt, and knees hurt. I picked her up as she couldn't climb into the bed and I realized she was quite hot. She had 103.2 fever. We realized that for the first time, she hadn't had her medicine before she fell asleep - we gave her the medicine and she went back to sleep.

I'm not sure if it was a coincidence that she got the fever and hadn't had her medicine - one dose.
If this is an unrelated illness...
What this back pain is about - lower back pain.

You had asked about the rash in your last e-mail. I'm not really sure if it has come back. It is SO hard to tell as her cheeks are often red from the steroids. And the phantom rash comes and goes so quickly. There have been a few times I think I have seen it, but I can't be 100% sure.

What are your thoughts?

Thanks so much,
L