Grace and her sisters all dressed up and ready to go to our church "Trunk or Treat"
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Gracie - 1 day after being diagnosed with bilateral retinoblastoma
Please feel free to ask questions and/or comment on items that you are not sure about or would like to know more. While I make every attempt to be accurate and up-to-date, this blog is from a father's perspective and may contain errors. Please do not misinterpret this information as being how experiences with retinoblastoma will occur or should occur. This blog is simply about one beautiful little girl and her daily battles with a terrible disease.
Gracie - 1 day after being diagnosed with bilateral retinoblastoma
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Proverbs 3:5-6
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Some Charities Who've Made A Difference In Our Lives
Retinoblastoma Links
Major event timeline
- November 13, 2012 (Tuesday) - 21st and FINAL EUA!!!! All is well. All exams will now be carried out in the clinic.
- January 6, 2012 (Friday) - 20th EUA. All is well. Gracie's baby brother has his EUA and genetic tests done today as well. Everything is good with him too.
- May 20, 2011 (Friday) - 19th EUA. No new tumors. All is well.
- November 12, 2010 (Friday) - 18th EUA. No new tumors. Conjunctivitis diagnosed in right eye socket....again : (
- June 18, 2010 (Friday) - 17th EUA. All is well.
- March 19, 2010 (Friday) - 16th EUA. No new tumors. Giant papillary conjunctivitis in right eye socket.
- December 11, 2009 (Friday) - 15th EUA. No new tumors. Last laser treatment.
- October 2, 2009 (Friday) - 14th EUA. No new tumors
- August 28, 2009 (Friday) - 13th EUA. No new tumors
- July 31, 2009 (Friday)- 12th EUA. No new tumors. Port a Cath removed
- July 21, 2009 (Tuesday) Gracie receives her first prosthetic eye
- June 26, 2009 (Friday)- 11th EUA. No new tumors
- May 29, 2009 (Friday)- Gracie had her right eye enucleated (removed)
- May 22, 2009 (Friday)- 10th EUA. Tumors in right eye continues to grow. Gracie will have right eye enucleated
- April 20, 2009 (Monday)- EUA today. Two new tumors in right eye found
- March 5, 2009 (Thursday)- EUA today. Small new tumor found in right eye
- February 16, 2009 (Monday)- HgB is 7.1. Gracie gets her second blood transfusion. Platelets are 12. Gracie gets her 7th platelets transfusion.
- February 7, 2009 (Saturday) - Last scheduled round of chemotherapy ends at 1:15AM!
- February 5, 2009 (Thursday) - Round six chemotherapy begins
- January 25, 2009 (Sunday) - Platelets are at 10. Gracie gets her 6th platelets transfusion and 2nd of chemo round 5
- January 19, 2009 (Monday) - Platelets are 18. Gracie gets her 5th platelets transfusion
- January 8, 2009 (Thursday) - Round five chemotherapy begins
- December 19, 2008 (Friday) - Platelets are once again 22 and Gracie gets 4th platelets transfusion (second in one week). HgB is 7.8 and Gracie gets blood transfusion (first)
- December 16, 2008 (Tues) - Platelets are 22 and Gracie gets 3rd platelets transfusion
- December 11, 2008 (Thurs) - Gracie underwent some dental work under anesthesia. She received two crowns on her molars
- December 4, 2008 (Thurs) - Round four chemotherapy begins. Gracie has her third and final subtenon injection of carboplatin
- November 20, 2008 (Thurs) - Platelets are 6 and Gracie receives one unit of platelets (her second transfusion)
- November 6, 2008 (Thurs) - Round three chemotherapy begins.
- October 24, 2008 (Fri) - Platelets are 3 and Gracie receives her first blood product transfusion
- October 9, 2008 (Thurs) - Round two chemotherapy begins. Laser treatments start on left eye and carboplatin injections in right eye
- September 19, 2008 (Fri) - Gracie has fever of 102F and requires her first "emergency" trip to the cancer clinic between chemotherapy treatments
- September 9, 2008 (Tues) - Kidney tests completed in morning. First round of chemotherapy started late in the evening (actually 12:30AM in the morning)
- September 3, 2008 (Wed) - Gracie had port-a-cath inserted and hearing tests performed
- August 28, 2008 (Thurs) - Second opinion in Houston resulted in same diagnosis but treatment plan included chemotherapy for both eyes. Estimated 50% chance of saving right eye
- August 25, 2008 (Mon) - EUA and MRI performed. Bilateral retinoblastoma diagnosed. Plans made to remove right eye and start chemotherapy for left eye tumors
- August 19, 2008 (Tues) - CT scan confirmed existence of calcium in the eye (a key for diagnosis of retinoblastoma)
- Aug 18, 2008 (Mon) - Met with ophthalmologist to have eye looked at
- Aug 9, 2008 (Sat) - Gracie's mom noticed opaque mass in Gracie's eye
Blog Archive
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2008
(107)
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October
(23)
- Giving Platelets
- Today's Counts
- A Cute Little Pumpkin
- Eye Hemorrhage
- Pics from the cancer clinic
- Cancer and all the little things
- Today's Counts
- Low Platelets
- The Inflammation Continues
- More inflammation!
- Lab results from yesterday
- Follow-up appointment today
- Tuesday update
- Happy Canadian Thanksgiving!
- First day home
- Sunday Reflections
- Our wonderful welcome home
- We are home!
- Day 2- Round 2
- Some Thoughts
- Round 2- Day 1
- Gracie's new hat
- Retinoblasts
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October
(23)
About Me
- James
- I am dad to six wonderful children and husband to the most amazing woman in the world! Our third child, Gracie, was diagnosed with Retinoblastoma in August 2008.
3 comments:
You're doing such a fabulous job of doing all that you do for Gracie, and still keeping things balanced for the rest of your family. Trunk or treat was a special Austin memory for my kids, and surely will be for your kids too.
I saw her at the church on Friday and thought she looked SO cute and very happy!
James, Stephanie and family,
Sorry that we haven't been visiting the blog in awhile. Thank goodness for children that are able to bounce back. What cute costumes. Glad to see that things are going fairly o.k.
Just wanted the family to know that Cameron's mom passed away today around 3:30 p.m. (Monday) We have been fairly busy coming and going to Barnwell. What a blessing to have the gospel in our lives.
Give Gracie our love and our prayers are with you all.
Aunt Mary Ann
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