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Monday, April 18, 2011

NEWS! ...and 10 not so easy steps!

The doctor at the cancer center called regarding Sophie's scans from last week. She had a CT of the Mandibular Facial as well as a CT of the head, a PET Scan and several different blood counts. I had already emailed him twice and called their office on Friday. It had been a week since we had last heard. And, to my surprise and delight, at about 10am, the doctor called. I thanked him first for calling and he said that he wanted to let me know that they had gathered Sophie's results and that there has been no increase in the amount of disease in Sophie’s system from the last set of scans. He said that from the scans, it appears the spot on her head is still there, but it has not increased in size. GREAT NEWS!!! He still wants us to come to our follow up in May, but that we had good news for today. YAY!!!

So, here we go and another month is well underway. On May 16, we will venture back to the cancer center and this Friday (Good Friday), overnight, we will go for a sleep study for Sophie. Hopefully this will yield some answers to her level of fatigue. She's been so tired lately...

So, in speaking about coping with a loved one having a serious illness, I have also tried to think of ways to help others cope in spite of a serious diagnosis that no one understands.  Here's what I've realized... in 10 easy steps...

Here's what you can control when things seem out of control:
1) Live more.... What have you been putting off that you can do NOW? Don't wait until tomorrow to make plans to go ahead with your wants/hopes/dreams.

2) Laugh more... Take more pictures/video and laugh more with your family and friends. Have fun and enjoy life today to it's fullest... (see title of this blog)

3) Education.... The truth is, no one really understands the disease. But, it's okay to educate them in a kind and genuine way. Give them links to online resources that can help them understand, but try not to bombard people with information unless they seem genuinely interested in knowing more. You'll just annoy them if they aren't. But, don't read too much. Everything on the search engines will have the most tragic endings. Just ask the doctors and nurses with experience with the disease to make recommendations. In our case ( then click on Histiocytosis AND )

4) It's okay to blog... Letting people know what you're going through is OK. Don't worry about being too real, people actually prefer having a little window into who you are and what your family is going through if you will let them. Obviously protect your identity if it suits you, but sometimes a care page or a blog is just what the doctor ordered! Warning - don't try to seem too Pollyanna (I've done this), it doesn't do anyone any good to mask reality, but rather rejoice in the good times, and look for the blessings in the bad times. They are there, trust me!

5) Gather the ones you love around you.... Now is the time to call your loved ones and lean on them. If you're like myself, you worry about leaning too much on your family and friends, but they want to pray for you and care about you when you need it, because they know you'd do it (and probably have done it) for them.

6) Seek guidance.... When you don't know what to do, join a support group or seek spiritual guidance to help you cope. You may find that you needed the support more than you thought you did. And, look for ways you can give back. Listening to others makes things better, trust me.

7) Get your house in order... Clean, get your financial house in order, do the laundry, etc... These are things you can control that may help you persevere through the struggles ahead. And, if the laundry's done... Hey, that's one less thing to worry about!

8) Take care... Take care of yourself. Make sure you're getting enough sleep and taking good care of yourself. Now is the time to stop smoking and take on new healthier habits wherever possible. You will need your strength. I have given up chocolate for Lent and have lost 10+ pounds because I am trying to be as healthy as possible for my kiddos as well as myself.

9) Keep track and plan... Get an online calendar manager or a device that helps you keep track of appointments. The iPhone 4 has been the best investment I've made to that end in a VERY long time. It really helps with calendar management as well as contact management.

10) PRAY... I've left this last one for the end of the list, but it's by FAR the most important thing to do. Pray Pray Pray... I do believe that God will follow you through whatever challenges you will face, including serious illness. Prayer can work miracles, and it already has for us!

Have a great day friends,

Please do not reproduce without this copyright (c) 2011, Jodi Morgan

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