Tuesday, March 9, 2010


I sat down to write this post on January 14th, but I was afraid to put into words what I was feeling. On that Thursday, Bean and I took what had become our monthly trip to Children's, we are SO lucky that it is less than an hour away. See, we started off going in once every two weeks, then for 4 months it was every four weeks.

Bean has started really liking our trips to Children's. For one - we have taken away the need for the blood-draws there - as we have been doing them at Dr. C's and 2nd - the ART ROOM! A magnificent place for children who are staying in the hospital or in for outpatient clinics to spend time and not focus on the scary - but to focus on what the beauty of creating a masterpiece.

Each time we are at Children's and wait for our turn to see Dr. H - Bean gets to create - to be a part of something so beautiful. It is during these visits that we get the opportunity to meet other patients and their parents.

Bean and I talk about medicine side effects, hair loss, vomiting, loss of limb, looking different...acknowledge people's differences and similarities - but it is also a real opportunity for us to be reminded what we have to be thankful for.

This particular day another girl, about 15 was there with her mom and brother - they had come in from a ways away. We spent about an hour on and off with them in the art room. They're a lot of parts to our routine there.

1. Sign in at main desk, write down list of all medications child is on - and why
2. Go to art room and wait....this could be 10 minutes...could be an hour
3. Called back by tech to take vitals - weight, height, temperature & blood pressure
4. Go to the art room and wait ...this could be 10 minutes...could be an hour
5. Called back to room to wait for Dr. H...could be 10 minutes, could be 45 minutes
6. Physical exam - conversation and plan
7. Go to the art room and wait - for either blood draw, or prescriptions...could be 5 minutes, could be 30
8. Set up appointment to come back

Bean and I were on step 4 when this young ladies mom walked in, mouth hung open...though I could see the joy (not fear) behind the shock..."we don't have to come back for a year!" She didn't know what to do or how to respond...with the information. We spoke about it for a minute, the fear of what would happen in that time. Would she able to spot any signs and symptoms that would require her to come back sooner? A year...I thought to myself, and even wondered out-loud what - what would it be like to be told to come back in a year?

The fantastic mom...who has been through hell and back looked at me and said - you'll get told "come back in a year" too - she was comforting me.

It was at that moment that that a flood of emotions came through me...I worry about my little girl - I even panic about her...but her prognosis is no where near as dire as these other children we meet in the hemotology oncology department.

At that moment in time, I had the ridiculous guilt of my child not being as sick as these other children...

There, I said it out loud. How ridiculous is that of me? Guilt that my child is not as sick as these other children...that this mom took the time to support me.

We moved on to steps 5 - 7....and then it was time for step 8.

Dr. H met us in the art room - handing us our prescriptions and the check out form...written clear as day - return in 6 weeks. While it wasn't the 1 year mark, it was 1.5 times as long as we had been coming up till then. That fantastic mom...who was still on step 8 even an hour later...looked at me and said, you'll get to your one year...one step at a time.

I shook Dr. H's reassuring hand....The fantastic mom gave me a hug...and Bean and I were on our way back to school.

I was afraid to get excited. I was afraid to be thrilled with the news...we have been down the "good news" path before...and burned. I decided to keep the good news to myself, still waiting for the other shoe to drop.

Bean and I went back 6 weeks later - Thursday, February 25th - we went through the motions. We followed our steps 1-8. Stopping to talk about hair loss and what would happen if she lost her hair, the picc line inserted a girls arm, or the pump connected to another girls upper chest.

Between steps 7 and 8 Dr. H came in - giving us the news that there was no visible sign of swelling or active SIJA...her blood work looked good - the methotrexate seems to be working. We were to continue on the same treatment path...and come back in 8 weeks!

This time I allowed myself to post the good news on my facebook status - it read:
Great visit with Dr. H...no symptoms visible...we don't have to go back for 8 weeks! That is AFTER Passover!
I still have the pit in the bottom of my stomach - the one that is waiting for the other shoe to drop....at the same time feeling guilty that we get 8 weeks to not have to come back, while others we get to know at Children's will not have even been released during that time.

For now I worry. But I am grateful and thankful that we haven't found the other shoe.

1 comment:

  1. Oh Lis, don't feel guilty!! But I do know how exactly how you feel. I often feel guilty for having a "good" cancer when I have a good friend who does not and will likely not see her almost 1 yr daughter grow up. She probably has at most another year...or less, so I totally feel guilty all the time when I see her updates. It is normal, we do have empathy for their situation but do need to see the joy in our own situations. I am so happy to see that her progress is going in the right direction!!