Harlan Sullins's Journal
Written Dec 5, 2013 8:42pm by Ginny HastingsHarlan has been under the weather for a couple of days and today he had to make a trip to his oncology office to have his port flushed. Everything checked out good, probably just a seasonal cold, but he was not happy about getting his port flushed. I always feel about 2 inches tall while having to restrain him for his port to be accessed. I look forward to the day when he no longer has to be subjected to that.
After his appointment Harlan was greeted by all of the staff at his oncology office. They all know that Harlan's birthday is next Wednesday so generously sung Happy Birthday to him and got him some amazing gifts! To say I was shocked is an understatement. To the staff of Blume Oncology, you're lucky I didn't bust out into the ugly cry. (It was all I could do to hold it in.) We have been beyond blessed with the doctors and staff that we have had throughout this entire roller coaster. We love you and I can not thank you enough for ALWAYS putting Harlan 1st.
Please pray tonight that Harlan kicks this nasty cold and that he doesn't decide to "share" it with mommy and daddy. Pray that Harlan continues to have good days and builds up as much strength as possible before taking this beast down once and for all. I don't think this "cancer" knows who they are messing with! - Jacki
Written Dec 2, 2013 2:32pm by Ginny HastingsThe Wednesday before Thanksgiving we (Jonathan and I) were able to talk with Harlan's radiation oncologist in Indiana. He told us that what happened to Harlan (the new lesion/tumor being located in the EVD shunt space) is a 1:10,000 chance. Not exactly the lottery we were expecting to "win". He told us that we have 3 options; but he only sees it as 1 option.
1) do nothing since Harlan is not symptomatic and expect him to be "gone" within a year.
2) treat only the new tumor bed and "play russian roulette." He said even though the scans and spinal fluid are clear and show no spread, we would all be "naive to think there are no other cells imbedded elsewhere." If we treat just the new location we could get behind the 8 ball and not be able to beat this beast. Perhaps Harlan would make it a year.
3) do full spine and brain radiation. If we want a chance at a "cure" we need to hit this beast hard and heavy. It's still not a guarantee. The effects of treatment to Harlan could and can be detrimental. We've been prepared for anything and everything. This still could not stop the "beast". But we have to pull out all the artillery now if we want any chance at preserving our Harlan's life. This is and would be our last shot. Once administering full brain and spine radiation no other treatments can be done.
That all being said and through many tears we have decided to do full brain and spinal radiation. This means we are heading back to Indiana. We still don't know when. Our insurance has to approve the treatment plan and we are praying they do and soon.
None of this has been easy on us. It's around the holidays, we are coming up on Harlan's 3rd birthday, in January it will mark one year since Harlan started getting sick and then in February a year that the original tumor was discovered and removed. Harlan is supposed to be busy being a kid and we aren't suppose to be planning more treatment...it's just all for a lack of better words, overwhelming.
This time Jonathan will not be able to accompany Harlan and I to Indiana. He's the only one working and right now that is very very important. Even though our world is complete havoc, the mortgage still has to be paid and food still has to be provided. We still are not 100% on the duration of treatment, but we are preparing for 8-9 weeks like last time.
Please at this time just pray for our family. Harlan's 3rd birthday is on December 11th. Pray that our insurance approves this new treatment, that Harlan stays healthy and proves all these doctors wrong and beats the snot out of this "beast". We know what he's capable of and we know we've got the best doctors on our team. - Jacki
Written Nov 28, 2013 7:44pm by Ginny HastingsThis Thanksgiving it is obvious what we are thankful for; Harlan. But there is so much more.
Having a roof over our heads. Jonathan having a job. Insurance to help with medical expenses. It's our family and friends that have rallied around us and put Harlan first. It's you guys devoting so much to a child many of you have never met. It's our Savior for untrusting us with our sweet boy nearly 3 years ago. For our experience with losing close loved ones not long ago that helps us understand what "quality life" truly is. It's knowing that our baby has fought so hard and valiantly against this beast and knowing he can do it again. Seeing Harlan's resilience and innocence at the same time. It's so much more thank just the giggles, the pitter patter on hardwoods, the hugs, kisses and the "luv ju!" Modern day medicine to help provide a cure. Doctors and nurses that treat you like family. There is so, so much more.
Throughout this entire journey there is one thing that has always shown through. No matter how difficult the road may be. How many bumps and swerves there are on the path. There is ALWAYS something to be thankful for. Life is a blessing in itself. Be thankful for the littlest things that you have because to others that may be all they hope for.
Bless you all and Happy Thanksgiving! - Jacki & Jonathan