Tuesday, June 30, 2009

Useless Agony

Our next appointment is Thursday. We check in at two thirty for an overnight stay for a cytoxin infusion. I feel the weight of the world on my shoulders right now. A decision that should not be one for whatever reason is. If your child had a disease that seemed to be getting worse or not responding the way you expected, at what end would you stop, or where would you begin? There is an expert, Dr. Lauren Pachman, located in Chicago, IL. She has pretty much devoted her career to children with dermatomyositis. A no brainer right? Get him there no matter what? I had no had the chance being in the hospital to contact her office or email her. Yesterday I finally had a breath to take so I did. I started with an email. I explained what has been going on, when he was diagnosed, ect,. The moment I hit send I knew it was not enough. I know those of you who know me, know I do not like to talk on the phone much. I just don't. Never have, unless it's my sister. But I will talk. I am capable. I suddenly lost control of my body, my heart, my brain, picked up the phone and dialed. I found myself on the phone with Dr. Pachman's office. A woman with a midwest southernish accent answered and was fun to talk to. She was the intake nurse and started taking my information. After a small delay of computer glitches she began the questions. When we got to "Now what is going on with Gary?", I told her. Not swallowing, trouble walking, ect,. She gasped, "Oh good Lord child, donch chew make me cry now, Oh Good Lord. You need to talk ta someone, oh Good Lord." And she went off the line. I found it amusing because here in the northwest we don't encounter such passionate accents much. She came back on the line and said, "Are you ready for this? Are you ready? Dr. Pachman wants to speak with you. Are you sure you are ready?". I said "yes, I am ready." That nurse was delightful to talk too. The good doctor came on and right off the bat said to me, "I could just cry for him". She knew who we were, thank you Kalee Carpenter. She proceeded to tell me that she could not treat Gary over the phone. We went into discussions about billing and insurance. She explained that she would not be there for the next ten days because she would be busy writing a grant. She said that would give me enough time to get approval for a second opinion or referral for the insurance. She wants us there on a Monday to check into Chicago Memorial and receive treatment there. I thanked her for her time and told her I would get to work and try and make it happen. Talk about being overwhelmed.

My next call was to Children's in Seattle. I in no way want to compromise, alter, deviate, or risk Gary's treatment. I do not want anyone at Children's Seattle think that I need another opinion. I need them to know I think they are doing everything they can. With that being said, then why am I considering Chicago. The nurse from the rheumatology clinic was great. Her name is Ruth and I like her a lot. I asked to have a discussion in confidence. She said that no one by any means would be mad at me or put a mark on me because I am seeking treatment elsewhere. Really you might be thinking, what do you care what they think? Because they are responsible for care and his treatment. Ruth told me plenty of patients at Children's seek second opinions. I am not the first. Nor will I be the first to take my child to Dr. Pachman. She did have a warning though. Her warning was the "too many cooks in kitchen". Once we go to Chicago and receive treatment from there, that is where our treatment will be given. I said, "so are you saying once I go to Chicago, I have to go there from then on." She said that we will be able to receive treatment at Seattle, but it will put me very much in the middle of keeping communication open with Dr. Pachman. She said that I would have to be a very active advocate for Gary and his treatment. Her exact terms was "bird dogging". Here is where I scratch my head and anxiety sets in a bit. What if we are there and we can't get a hold of Dr. Pachman? I know Seattle Childrens doctors won't be like well sorry, tough luck, but still. I would like to say I have to also consider financially this isn't practical, but this is my sons life. Nothing is worth, or should I say everything is worth giving up for him.

Gary had a great day today. He is in great spirits. Yesterday was a bit rough but today was good. He loves it when his Nannies are here and with him. His feedings have been going well. Swallowing is very much a life threatening activity still. He got a hold a small bit of potato at dinner the other night and its that purple blue color that his face turns that makes me sick. I tried a small scrambled egg. No go. No way. We tried giving him juice because he was soooo thirsty, shot straight out his nose. He is very grumpy when he wakes up because the saliva goes into his sinuses. The nurse heard him coughing still pretty consistently while I was talking to her about Dr. P. She said I need to take him to the pediatrician. So last night we ran him up for another check-in. His pediatrician said his lungs are still very much clear and continuing on antibiotics would not be the best decision. We talked about the thrush like rash in his mouth. He also said treating and weighing the possible side effects of yet another drug point towards favoring not treating it. I spoke with my pediatrician about going to Chicago. He asked me to give him a day and he would do his own research and let me know his opinion. He also had another opinion he thought it was important we knew. He warned us that this is just his opinion and this disease could take whatever turn it wanted to, however, he feels it will get much worse before it gets better. We thanked him for his honesty. Both Robert and I value what he has to say. He called me back today and he thinks we should go to Chicago. He said we are receiving EXCELLENT care in Seattle but having an expert on board would be good. He advised me in how I should approach and present it. I need to ask if Dr. Pachman would consider becoming a consulting physician, and work with the doctors here in Seattle. I am nervous to ask but I will.

Head on table, breathe out, breathe in, don't spin. What to do. I know that it is an obvious to some of you. We are still working on insurance details, where we would stay, ect,. My family thinks we should go. I did read they have the Ronald McDonald House two blocks from the hospital.

I have created this poll. Yes, I would love to here what you would do. Know that your opinion is valued, but this of course is ultimately my decision. I plan on talking with the doctors on Thursday to feel them out and see what they think. Thanks for your time participating in my silly poll! Here is the link: www.misterpoll.com/polls/440438.


  1. I am so excited for you. You will not regret the day that you go to Chicago! Dr. P is our consulting physician. You still have to have your "local" in state team, but she will get every report on everything they do. If she sees anything out of line or if they have any questions she is there and knows your case. She will even talk to you at your appointment about who will make what calls in his treatment plan! She is very good at working with the other doctors. Like I said she isn't taking any new patients so she is great at working with others especially out of state! You can do it! I know that it is a big step and a leap of faith, but it is life changing. Hang in there mama tiger! We are praying for you!

  2. Good evening Erika, This is my first attempt at commenting on a blog, so I hope it works. I am Lynn Williams, one of Roberts customers from Oregon. Once I heard about Gary's condition, I immediately began an interest. I have taught 4 & 5 year old in Sunday school at church for over 20 years, and have met several special kids and enjoy watching them grow. I am also a parent of 3, with kids ranging from 14 to 21. I also have a neice with severe CP, so I have several perspectives on what you might be going through. As a parent, I would follow my heart, spouse, family and most of all rely on Gods word to help me through a time such as this. I also would be first in line to go to Chicago after all arrangements have been made. Life is precious, and so is Gary. It sounds like you have a great supportive family and if I were in the area, I would offer any assistance you need. For now, that will involve prayer and support. Take care, and I will be looking forward to hearing about tomorrows adventure in your mission. Lynn

  3. I know that you will do what you think is best for Gary but if you have the option to take him to be seen by one of the top doctors in this field, DO IT!!! He is worth what ever it takes. Know that I am always praying for you and love you and your family soooo much!

  4. Hey there Erika,
    You bet I would want the expert collaborating with my local docs! Praying for God's provision to get the wheels in motion.
    Big Hugs ~ Mary

  5. Not sure if this is going to post. My first attempt said my post would appear after approval but when I pressed the "preview" button, nothing was there.
    Heavenly Father, we are believing that You have revealed to Erika the expertise of Dr. P, and we are trusting in your provision to connect her with Gary and his local doctors. Grant Erika and Robert the clarity of mind to process all that needs to be managed within their family and with Gary's medical concerns. Lord, only You can give them the peace that passes all understanding and we ask that you would fill them with Your peace. Give family and friends eyes to see how they can best support the Bradfords. We love you, Lord. In Jesus name we ask that you would bring Heaven to earth and return Gary's body to wholeness, amen.
    Psalm 94:19 When doubts filled my mind, your comfort gave me renewed hope and cheer.