Thursday, July 9, 2009

Feeling Confused

Matt and I are still trying to sort through what this next phase of Brady's care is going to look like. In all honesty, we feel WAY out in left field, all by ourselves, calling all the shots. By going to Sloan we in turn seemed to have almost cut ties with Strong. I know I have used this expression before, but Brady isn't on any one's "To Do" list. It is up to us to ask for blood work, urine analysis, scan dates, and I have to say I'm started to crack a little under this pressure. So we thought we had made a clear decision to just go to Sloan for the scans. However, in just dealing with the scheduling process, I feel all the old familiar frustrations of being a little fish in a big pond. For example, we still don't have a doctor there who we deal with. We have very briefly met with 3 of their oncologists during our 3 trips there, all of whom learned about Brady upon walking into the office to meet with us. We don't have "a doctor" to call when we have a concern. For example, I had to call the surgeon's office to ask how to get scans scheduled. They gave me the number of the oncologist's office that I said I had liked the best. A different oncologist's office called me two days later with scan dates. If we do go there we will just have the scans done, then come home. We will have to initiate a meeting with "a doctor" if we want one, and if you remember there are no real appointments, you just kind of go and wait. So how does this play out if we are having to go down there every 3-6 months for the next 5 years? Who is our go-to person? When/where is Brady having his blood/urine tested? We are toiling over these questions and are frustrated that we have been sort of left in the dark to make these decisions. Please be praying that we will have a clear cut plan of action soon...My opinion is that we have enough to worry about just living with a child with cancer, we need a doctor to coordinate his care. We don't want that job anymore!

I forgot to give an update on Cara's appointment yesterday! I really liked the new eye doctor. He is noticing some irregular movement with her right eye, however, she did not do the head tilt that we see at home. It is hard to recreate the situations where we see it when she is in a small exam room. She only tilts her head when looking at things in the distance, further than about 10 feet. He feels that what I am describing and what he saw sound like a 4th nerve palsy in that eye, basically a weakening of her eye muscle. There is a quick surgical procedure to correct this, but he needs to see her again at least once to really pin down the problem. Although we have been dealing with this for 1 1/2 years now, I'm glad I found a doctor that is listening and willing to do something about it. We go back in September.

Allie had her appointment with the dermatologist today regarding the spot on her leg. The doctor said it is a Juvenile Xanthogranuloma (technical, I know, but I like to have it written down somewhere!) Basically it is just a small, bumpy, orangey-brown spot on the back of her thigh. It may grow, it may go away, but it isn't likely dangerous. He gave us the option of leaving it or removing it. Hey---if this mom is given the option of easily removing something from her kids body--that is a no-brainer! We are going to have it taken off, it will be an office procedure with a numbing needle-stick and then a few stitches. Poor Allie, but in the scheme of life in the past year, seems easy!

RSVP's for the Brady Bash are rolling in! Hooray! Can't wait to celebrate!


  1. Just wondering w/ your insurance for Brady do they offer a case nurse to help w/ these situations? When Russ was on comp. he had a case nurse that showed at appointments, asked questions, took care of perscriptions, scheduling, and any problems w/the whole thing. Eventually we realized as time went on that she became more of a help to the comp. carrier instead of us, so we didn't use one anymore. BUT i'm just thinking w/Brady maybe it would be a good thing, and maybe the insurance carrier can suggest some program and or nurse/coordinator who will be in touch weekly via phone and even be w/you at appointments etc...Just a thought and maybe you already checked into it.

    What are some of the other parents of cancer patients saying about it all, surely they've experienced similiar situations, or found a way to nail it down.

    Maybe you just need to get angry like i did w/social security when i was fighting for an income just in order for my family to eat and have electricity and i discovered they had loss my paperwork for the THIRD TIME!!!!

    I screamed them a NEW FACE and told them i was going to take my story to channel 2, 4, and 7 and the newspaper and see how they liked everyone knowing that might kids were starving b/c they expected me to file over for a FOURTH TIME in order to get the help i needed. I even enclosed the three different copies of my paperwork as proof! I got attention immediately w/an apology. My case was expedited. That went on for a year, and i bordered a nervous breakdown, I didn't have a spouse like you to help me, i felt like David fighting Goliath!

    Remember in every office, in every building, be it Rochester or NYC, all kinds of people, receptionists, nurses, docs...take vacations, and other people are filling in and don't know the cases, mishandle paperwork, and simply just DROP THE BALL!!!

    When God closes a door, look for a window!! No one person not even the best surgeon can stop God's plan, God's timing, God's miracle. God knows all things, and sees all things, He will make a way when there seems to be no way. Rest and know that this too will be answered. Don't let the enemy rob you of your joy and faith. Stay the course and be strong! Your answer will you always...don't be afraid:)

  2. Hi Meg,

    This isn't really a novel idea, so you've probably already considered it or someone's mentioned it before, but is it possible (and would it make sense) for your primary care pediatrician to coordinate things for Brady? The situation does sound REALLY frustrating and confusing. I'm sorry I don't have any great new ideas to share. I will pray you find the direction you need and a doctor to work with regularly that you feel good about.

    Thanks for the updates on Cara and Allie. Glad things are going more smoothly in those cases.


  3. Poor you. Ithought that the British National Health Service wasn't a lot of good but you seem to be even worse off than we are here in the UK. Loving hugs and prayers coming your way. Try to stay positive even though it is a hard thing to do. Pam xx

  4. Things are moving along; good for you. Cara and Allie are in good hands, and soon you will have Brady's car coordinated. The prayers are working, just not as fast as we all want. It's hard to be patient! But the prayers continue; you know that.
    Love to you all!

  5. Meg,

    Keep praying for your doctor. God will provide you with a doctor to be your advisor. God knows what you need.
    Love, Deb R.

    Some exciting news! I have new granddaughter, Abigail Summer born early this AM in CA. Can't wait to see her.

  6. Not having one doctor to coordinate Brady's care would be extrememly frustrating to me! Keep pushing forward, the Lord will lead you , He will be your constant will all else seems so uncertain!

    Praying that you get some answers and a plan soon!

  7. My thought is to have Brady's care closest to home. My husband had 2 bone marrow transplants at Stanford in 2000, but eventually was turned back to care near home. We go annually to Stanford and more frequently at home. You need someone following his care who cares!
    For what it is worth!

  8. I like the idea about getting mad and making all this craziness public. Write a letter to the powers at be, whom ever that is. Perhaps your destiny is to help change this bizarre way of handling care for cancer patients. If anyone can make a difference it is you my dear friend. I love ya! Be strong!!!! Hugs


We love to read your comments!