April 23, 2010

Well, we received the results from the test on Monday and it turns out the masses are actually blood clots that have grown 20% in 3.5 weeks. They have to run another test in order to determine where the blockage is but they believe it is in the vein from his spleen. If that is the case they are talking about cutting his belly open and placing a stint in the vein to relieve the blockage. If they do that they intend to also remove all the fluid that has replaced his pancreas. We would have to be in the hospital for at least a week and then we are uncertain about the healing time at home. We are so thankful it is something that they can fix and we are hopeful the surgery will do this. We are scheduled for the test on Tuesday, April 27th, and should have the results the following day.

Good news, we are officially on maintenance as of Wednesday. So it looks like Jon will be able to finish treatment at least one month before he graduates from high school. We are so thankful to finally be on maintenance as this means most of the chemo will be by mouth and our visits should be fewer and farther between to the clinic.

We had to return to the ER Wednesday night due to severe chest pains, but after running all sorts of tests, they could not find anything life threatening and we were released just after 3:30 am. His cardiologist was notified of this incident so we expect to have to have follow up visits with him at a later date. Hopefully this was just an isolated incident and we will not have to return to the ER anytime soon.

We especially appreciate all the prayers that are being said for Jon and believe me, they are making a difference! Please don’t stop and we will keep you up to date on his progress.
Thank you.

Hi There

One thing I forgot to mention was that Jon turned 15 on the 9th of this month. Due to his numbers being so low we were not able to have his friends over, but we are planning a party later in the summer for him to enjoy spending time with his friends at a pool party. We did have a little party for him with the family at home.

We were invited by Rollings Middle School of the Arts to join their location at Relay for Life this past Friday night at Summerville High School and we had a wonderful time!!! I did not realize it has been almost 11 months since he has been able to see his classmates and he was able to visit with quite a few of them last night. He really enjoyed himself and the program was terrific.

April 15, 2010

Well, I guess you won't get the photos today as I cannot figure out how to attach them or get them on the blog. When Arielle is available I will have her do so and we will share them with you. Sorry about that.

April 15, 2010

April 15, 2010
First the biopsies from March….all were good except for reflux and gastritis but those can be controlled with medication. However, they found two small masses in his stomach and we are scheduled for another endoscopy with ultrasound on Monday, April 19th. They could not biopsy the masses as they did not want to cause any other damage from possible internal bleeding so we have to wait for this test to determine further information.

Jon is over his cold, finally, since he was limited as to what he could take, we pretty much had to let it run it’s course. We all were sick in our household for a couple of weeks but now everyone is well again.

Jon’s numbers began dropping almost 4 weeks ago and this past Monday were at their lowest this year so we still have not been able to start maintenance. Additionally, we were afraid we could not have the test done this coming Monday as his numbers had to reach a certain number in order for them to be able to operate. Well, we received a miracle this morning as his numbers have climbed enough for us to be able to go through with the tests on Monday. Thank you all for your prayers in helping to make this happen. Now we need prayers for a good outcome for the test. They plan to try to look at his pancreas during the procedure as well.

It has been a busy month as Arielle had her senior prom and then she went to D.C. for 5 days with her class. She thoroughly enjoyed the trip and even though it was rushed she took lots of pictures and learned a lot on the trip. She did get to visit a great number of places and Jon was wishing he could have gone as it has always been a dream of his to visit the Smithsonian. Now we are working on getting her graduated from Summerville and enrolled in CSU for the fall.

I have attached a couple of pics of Arielle and Jon from the night of her prom and as you can see he is just a tad taller than she is now. He is still growing taller, even though he is not gaining weight but neither is he losing right now. We are very thankful for that and hopefully when we reach maintenance, his appetite will improve and he will put on a little more weight.

He is coming along with his schoolwork, even though it is very difficult not being in a classroom setting and only receiving 5 hours per week from homebound when his numbers are up. He missed homebound for over 3 weeks so is struggling to catch up. I have no doubt he will do so and we are praying his numbers will be way up and we will be on maintenance by the end of May when Arielle graduates so he can attend.

As far as Camp Happy Days, we are still hopeful that will happen and Arielle is planning to go with him as a junior counselor. I don’t know what I will do with myself for a whole week without either one of them!!
Thank you for your continued prayers and I will update next week when we receive news. Take care.