Hospital Admission

Hello everyone, once again from MUSC, 7B. Jon began running a fever Saturday afternoon and we were instructed to bring him to the ER to be checked out. When we received the test results back, we found that his numbers had dropped significantly since Wednesday so they admitted him for further treatment. We will be here til at least Tuesday morning. We cannot begin the next phase of chemo until his numbers are back up somewhat so we will keep you posted on his progress. Thank you for your prayers.

Prayers do cause miracles!!!!

Awesome news......one month to the date from diagnosis, we received the news that Jon is in remission both in his spinal fluid and bone marrow!!! We were both astounded and very happy that this was accomplished so fast. Thank you so very much for all the prayers ,for without them this never could have happened.
We still have about 6 months of intense chemotherapy with some radiation ahead of us. Please keep us in your prayers through this next phase. We will keep you all posted as time goes on.

Court of Honor

Last Saturday was the troops Court of Honor, it was held at the Old Fort Dorchester State Park. Jon was not able to be there in person so someone had the idea to bring him there by video conference. Mike Hicks brought his lap top and web cam and set up the feed. We put a web cam on the home computer and hooked up with Mike at the park. Jon was able to see and hear the ceremony. Jon was also awarded his merit badges he earned at summer camp. Climbing, Canoeing, Motor boating, and Archery. This put him up to 17 total (three of them are Eagle required). Jon is continuing to work on merit badges at home as he can. So keep him in your prayers and hopefully we will be back at scouts before you know it.

Dad

Note from Jon

Hey
It’s jon
I am feeling really good at home. 2 weeks of a hospital has taken its toll, but I am slowly recuperating and getting used to going to the clinic.
This week is going to be my toughest week.
On Tuesday, I have to go see the pediatric surgeon about a port, a lumbar puncture, and a bone marrow aspiration, then will be admitted to the hospital for all this to happen on Wednesday sometime.
More than likely, starting the following week, I will be at the clinic Monday through Friday all day doing chemo for the next 3 weeks. Those are probably going to be the toughest 3 weeks yet, but with my faith in the Lord and all he does for me and my family and friends, I am not too worried and I know that with the right state of mind, I can do anything I put my mind to.
This whole experience has made me look at life from a whole new perspective – the perspective of those not as fortunate as I. I am so thankful for all the support from all my family and friends and all of my family’s families and friends and so on. I know that if something goes wrong, GOD will be there to fix it and I will learn from it.
Until next time…

Sunday, August 23rd

Hi everyone,

Sorry for the delay, it has been a busy week. We have been doing pretty well, just taking things one day at a time. On Tuesday, his numbers were down a little from the previous week but not completely in the danger zone. Jon was able to spend Wednesday with his maternal grandparents, Steve and Mary Massenburg and really enjoyed getting out of the house and then on Thursday, his paternal grandparents, Merlin and Joyce Bellamy, along with his Aunt Patsy and cousin Matt, came down from Myrtle Beach and spent the better part of the day with us.



On Friday we were informed that when we return to the clinic on Tuesday for the visit with the pediatric surgeon, Jon will be admitted for surgery on Wednesday. They plan to remove his pick line, place a port in his chest, do the bone marrow aspiration and the spinal all at the same time. We don't know how long we will be in the hospital but will keep you posted. Once the results from these tests are known, we will know what the next course of treatment will be.



I hope this finds all our family and friends doing well and thank you for keeping us in your prayers!!!!

First Week At Home Sweet Home

Well, Jon is settling into somewhat of a routine this week. It has been challenging some days due to the medication making him hungry all the time and trying to keep his food down but we think we have finally figured out a way around it. Since his numbers were up at his clinic visit he enjoyed throwing the frisbee outdoors with his friends again. We also have his diabetes under control now with only one shot per day instead of three or four.

He was able to visit his buddy Zach, in the middle of completing his Eagle project and speak with all his boy scout friends from his troop. That really lifted his spirits to know that they missed him and were looking forward to his returning to his place as quartermaster for the troop. He will be able to work on some of his merit badges while at home to earn his Life rank, then the next step will be to complete the requirements to earn his Eagle.

We were able to obtain information to get him registered for online school and will be starting that very shortly. He feels he has a distinct advantage over his friends, in that he can wear whatever he wants to, (including pajamas) to go to school online.

His buddy, Andrew called him from Germany to talk about things and he thought that was really cool. He was also able to ride in his sister's first car to get a pizza at the drive through.

We will be returning to the clinic this coming Tuesday, so pray for good numbers again this week.

First Clinic Visit

We had our first outpatient visit for chemo treatment at the clinic on Tuesday and it went very well. His numbers were promising and he was given the ok to be able to be out in the front and back yards without a mask. We were told to enjoy it while we can because it would probably change. Jon still can't be around crowds and that won't change for some time but at least he can have visitors (who are well) a few at a time. We met the staff at the clinic and Jon found it was less stressful than he thought it would be and we were only there for 4 hours. We will be returning next Tuesday for a repeat performance, then the following Tuesday will entail more indepth procedures that will take most of a day to complete. We know in our hearts that he is doing so well thus far totally due to the many, many prayers that are being said for him all over the country and now in Germany and Scotland.

Please know that we are so very appreciative of all the thoughts and prayers for Jon and the whole family and are truly blessed to have so many friends and family who care. Thank you to each and every one of you!!!!!

There are several events being planned on Jon's behalf and if you are interested in learning more about it you can access the information at this site. http://jonathansangels.blogspot.com/

At home with the gang

Home at last

Sunday Aug 9th
WE ARE HOME AT LAST
After 13 days at MUSC we are home and trying to get things back to some sort of normal. Jon is doing fine and glad to be home and we are so happy to have him back home. The first night we all could not wait to sleep in our own beds and eat real food again. The neighborhood kids came out in force to see Jon and gathered at his window to talk and tell him how glad they were to see him home. At this point we start the next stage of our adventure, trips to the MUSC clinic every week for treatments and have been told to plan for the whole day when we go. At times we will be spending the night or two. So as of now we are just glad to be home and having the family all back together. We will update as things change and try to keep all informed as much as possible. Thanks for all your prayers and love.
John.

Post on Saturday the 8th

First of all I would like to say thank you to all of you that have called and e-mailed us with your prayers and thoughts of love and caring. It has helped us get through a very rough time in all our lives. It has been a rollercoaster of a time with clotting factors out of whack and blood sugar that thinks it’s a yoyo. It is setting up to be a very long road. Jon is doing well for what he been through and has had some dark times and is fighting to keep his spirit up. Mom and Dad are doing their best to keep things moving in a positive way. We are learning how to take care of Jon when he gets home and teaching him how to take care of himself.

I would like to take the chance to let everyone know that there are angels on earth; the staff on 7B of the MUSC Children’s hospital is where you will find them. They have been absolutely the best I have ever had the pleasure to be around. Mary Margret, Abby, Jessica, Nicole, Seth and all of the others have given Jon a level of care not found any place else around. If any one can get to heaven by merit alone these folks have got a place at God’s throne. Thank you so much for the love and caring you have shown our family.

When I get the chance to sit down again I will post more. But for know just pray that we can get Jon home and some normality of life.
John.

The Atrium :)

We are still up at the hospital today. Right next to our room there is what is called the Atrium. My brother and I can go and play pool and on a Wii and on an X-Box. Jonathan is in high spirits. We have started lots of chemotherapy.

Because of the cancer in his brain and his spine we will have to start radiation after the chemo therapy is done.

GREAT NEWS!!!! we will hopefully be able to go home on tuesday or wednesday or thursday!!! It depends completely on his counts. One of the factors of leukemia is a high white cell count. The chemotherapy kills the good and white cells. When John was admitted his white cell count was 80 thousand the norm is 5 to 15 thousand. Right now it is at 1 thousand. His cell count will bottom out and his immune system will not work properly. If his white cell count is still down we can go home!!!. Also his platelet count was down when he was admitted. This means that his blood is not clotting correctly and if he had hit himself somewhere there could have been internal bleeding. The doctors have given him 5 bags of platelets and his count is up :)