Harlan Sullins's Journal
Written 9 hours ago by Ginny HastingsSteroids are such a double edge sword. They work fabulous for what they are intended...but they are the devil for the emotions and hunger.
Poor Harlan has been eating non stop. I've been taking every measure possible to supply low calorie healthy snacks as he seriously eats around the clock. It's pitiful. Today he was much more distant and unsociable. I know it's the drugs, but it's difficult to see. This morning I got him outside for awhile and as a result he took a 3 hour nap. This evening he was a little more wobbly then normal...but I'm beginning to think some of it has to do with Harlan's self confidence. I know that sounds silly, but I truly think some of it is him being unsure of himself. This Friday Harlan has an oncology appointment and I intend to discus physical therapy and occupational therapy with his doctor. I really feel like Harlan could benefit greatly from them both.
Switching gears, I want to ask that you please continue to pray for sweet Hailee Cunningham. I've spoke of her frequently on Harlan's page and the last update I gave you guys was she was being sent home with hospice. This weekend Hailee developed a lot of swelling in her stomach, so yesterday she was taken to Children's hospital. The swelling is a result of the tumor blocking off her bowels. She is currently in surgery right now to help alleviate some of the issue. Her tumor is inoperable and this procedure is to hopefully take the mass majority of the pain away so that she can return home and make as many memories as possible.
This has been heavily on my mind along with the loss of a fellow ependy fighter, Nicky (what Harlan has). Sweet Nicky Bear earned his wings yesterday after a nearly 4 year battle with Ependymomas. Please also keep his family in your thoughts in prayers.
I know God has a plan...I don't question that for a second. I have to admit, it gets harder and harder to keep fighting with a smile on my face; and it's not even my battle. These children deserve so much more than what they are being dealt. With all the advancements in the world a cure should have already been found, period. I'm sorry for my bitterness...but my heart hurts and my mind is tired and weak. - Jacki
Written Mar 5, 2014 9:08am by Ginny Hastings
Written Mar 3, 2014 6:17pm by Ginny HastingsWe are packed...literally! Tomorrow is the day! To say I'm excited is a complete understatement. Harlan is absolutely through the roof ready to go. He totally gets it; "tomorrow we go back to white house!" (Our house is not white, it's a light gray, but in his eyes it's white and I'm ok with that.) I really think the count down calendar has been a huge success for him, especially understanding when we can leave.
Tomorrow morning Harlan's appointment is at 8am. I have all intentions in hitting the road no later then 10. (The clinic has a party planned for Harlan; they do it for all the kids on their final day.)
Real quick before I close out for the evening, I want to mention 2 very important people who have impacted Harlan's life (and mine) while in Bloomington. These people were once complete strangers, but now we know them as friends. The 1st being David who was a sales associate we met at the local Christian book store shortly after Harlan lost his hair and the 2nd is Jenny, who we met as a waitress at a local restaurant. (You guys know who you are.) God has a way of putting special people in your path when you least expect them and most need them. These individuals both showed Harlan the love and compassion as if they were family and had known him his entire life. It wasn't just the cute bald head that pulled them in...it was the tender blue eyes that had a tremendous story to tell. I say it time and time again because I quite honestly don't have any other words; thank you. It seems so inferior to what you have done. And that goes for so many of you out there that have written, sent packages or simply smiled in our direction.
God bless you all! You ALL will forever hold a special place in my heart. - Jacki