On Monday the 17th, we checked into the hospital and started antibiotics to prepare him for surgery. The surgery took place on Tuesday; however, it went longer than planned. They worked on his back first and it was not very successful in that they were only able to extract about 15% of fluid as the rest of the cyst had hardened. We were told they would address this issue at a later date.
The other surgery went well and the dr. is hopeful it has solved the problem without causing others in the future. We have to run another test in two weeks to get our answer but we are praying for success! He had some internal and external bleeding so bruising is expected but will eventually go away. His numbers dropped tremendously right after surgery but we were told that was normal and they should start to rise as he recovers. We were able to go home on Thursday afternoon and now had to finish getting ready for Arielle’s graduation party.
It was a success and she is very excited about the summer out of school before she heads to CSU and the grueling schedule to begin her nursing degree.
Monday we returned to the clinic to begin his five days of chemo again and he contracted a sore throat and head cold over the weekend. It worsened through the week and although they started him on another antibiotic, he ran a temperature yesterday so after being at the clinic for half the day we returned to the ER at 9pm but he was released at 1am. His numbers again had dropped in half from Thursday morning to Thursday evening and it was touch and go as to whether they were going to admit him.
We returned to the hospital this morning for the ultrasound on his gallbladder and it appears there are no stones so we are thankful for that! He received his last dose of chemo this morning and we do not have to return til next Wednesday for blood work and testing to see if the surgery was successful.
He is pretty excited that school is out so he can talk with his friends throughout the days and evenings and he should be able to start on his end of course exams by the end of next week.
We thank all of you for thinking of him and keeping him in your prayers and will keep you updated as we go along. Take care and enjoy the Memorial Day weekend!
Friday, May 28, 2010
Sunday, May 16, 2010
May 16, 2010
We did return for another test, an ultrasound, but it was inconclusive so week before last we returned for an MRA. This test shows all the arterial flow and we were contacted by MUSC this week and met with the head of interventional radiology. This dr. will be performing the surgery on Jon. They plan to place a plug in his artery leading to his spleen by going through his femoral artery, then turn him over and go into his back to try to draw out the fluid at his pancreas. This surgery is scheduled for Tuesday, the 18th at 1:30pm. It will take about three hours altogether and we are hopeful they can do it all. This is the least invasive as they will go into his femoral artery with a sheath and into his back with a needle and a tube.
We are so thankful they are not planning to cut his belly open so this not only reduces the risk of infection but the hospital stay should be a couple days shorter and his recovery time a little shorter as well. There are risks, of course, but we have weathered them so far and with God’s help and all the prayers being sent for Jon, we are optimistic that all will go well.
As we were wrapping up our visit Thursday morning, Jon began to have severe chest pains again and was doubled over. We went directly to the ER and they ran tests but could find nothing out of the ordinary. We were able to come home around 3pm.
Since this surgery is taking place next week, we are having to forgo the maintenance schedule until he is back on his feet. I am not sure if this will delay the end date but we won’t know that for awhile
Jon is almost finished with all of his courses except for Algebra and Spanish. The Spanish course online will run through mid August and we plan to have homebound instruction for Algebra resume in June and hopefully be completed by the end of June.
Arielle was able to get her schedule from CSU yesterday and she is taking 18 hours the first semester. She will really have to cut back on some hours from all four of her part time jobs in order to keep up with her studies. She is very excited about going in the fall and is still planning to get her degree in nursing. She graduates on the 30th and we are hopeful that Jon will be able to attend.
Thank you for caring about all of us and I will keep you posted on his surgery by the end of next week.
We are so thankful they are not planning to cut his belly open so this not only reduces the risk of infection but the hospital stay should be a couple days shorter and his recovery time a little shorter as well. There are risks, of course, but we have weathered them so far and with God’s help and all the prayers being sent for Jon, we are optimistic that all will go well.
As we were wrapping up our visit Thursday morning, Jon began to have severe chest pains again and was doubled over. We went directly to the ER and they ran tests but could find nothing out of the ordinary. We were able to come home around 3pm.
Since this surgery is taking place next week, we are having to forgo the maintenance schedule until he is back on his feet. I am not sure if this will delay the end date but we won’t know that for awhile
Jon is almost finished with all of his courses except for Algebra and Spanish. The Spanish course online will run through mid August and we plan to have homebound instruction for Algebra resume in June and hopefully be completed by the end of June.
Arielle was able to get her schedule from CSU yesterday and she is taking 18 hours the first semester. She will really have to cut back on some hours from all four of her part time jobs in order to keep up with her studies. She is very excited about going in the fall and is still planning to get her degree in nursing. She graduates on the 30th and we are hopeful that Jon will be able to attend.
Thank you for caring about all of us and I will keep you posted on his surgery by the end of next week.
Friday, April 23, 2010
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.
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.
Saturday, April 17, 2010
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.
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.
Thursday, April 15, 2010
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.
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.
Thank you for your continued prayers and I will update next week when we receive news. Take care.
Monday, March 15, 2010
March 15, 2010
Hi everyone...we received news that the intense treatment is only for one month, March, so we will not have to go to the clinic or hospital as often as we first anticipated.
Jon did get his MRI done on his pancreas and it is still the same. They still don't want to operate until his immune system has improved tremendously so they will continue to monitor it. We did have to have an endoscopy done last week and they took quite a number of biopsies to ensure what they saw on the camera was the same that they see through a microscope. We expect news of the results today. We were admitted to the hospital last week and fortunately we only had to stay one night. We did not leave til 8:30pm the second night but at least we were able to come home.
Jon is suffering right now from a head cold and because of his condition, it will take awhile for him to recover. The treatments went well last week and we are returning this Wed for 4 more daily treatments. Then we should get a two week reprieve, except for blood work, then hit maintenance early April.
We were told this week that it is highly possible for him to return to Summerville High School in August of this year and he is beyond excited. He will still miss some days due to chemo but we will work it out. He just wants to get back to school to see all his friends. There is also a possibility that he can go to camp through Camp Happy Days in July since they will have a full medical staff attending the whole week. We are still working on this but it would be wonderful for him to be able to do so.
Thank you, everyone, that continue to pray for Jon's recovery. We are heading in the right direction and see the light at the end of the tunnel as far as completing all of this. We really appreciate all of you keeping him in your prayers. Take care and God bless you.
Jon did get his MRI done on his pancreas and it is still the same. They still don't want to operate until his immune system has improved tremendously so they will continue to monitor it. We did have to have an endoscopy done last week and they took quite a number of biopsies to ensure what they saw on the camera was the same that they see through a microscope. We expect news of the results today. We were admitted to the hospital last week and fortunately we only had to stay one night. We did not leave til 8:30pm the second night but at least we were able to come home.
Jon is suffering right now from a head cold and because of his condition, it will take awhile for him to recover. The treatments went well last week and we are returning this Wed for 4 more daily treatments. Then we should get a two week reprieve, except for blood work, then hit maintenance early April.
We were told this week that it is highly possible for him to return to Summerville High School in August of this year and he is beyond excited. He will still miss some days due to chemo but we will work it out. He just wants to get back to school to see all his friends. There is also a possibility that he can go to camp through Camp Happy Days in July since they will have a full medical staff attending the whole week. We are still working on this but it would be wonderful for him to be able to do so.
Thank you, everyone, that continue to pray for Jon's recovery. We are heading in the right direction and see the light at the end of the tunnel as far as completing all of this. We really appreciate all of you keeping him in your prayers. Take care and God bless you.
Saturday, February 27, 2010
February 27, 2010
Hi There.....hope everyone is doing well. We made it through February and all the treatments with minimal side effects. He is seeing a cardiologist now due to some problems with his heart muscle wall but they are monitoring it very closely, especially since the chemo treatment he just underwent this month can cause additional problems as a side effect. We are very happy with the cardiologist and he is very pro-active so we are confident they will stay on top of this.
Unfortunately, due to the intensive chemo this month, Jon has lost all of his hair again. He is okay with this as his response has been "oh well, it'll grow back eventually". I am truly amazed he has such a good attitude despite the issues he has to address.
His biggest concern is lack of socializing. He really misses all of his friends and teachers and is very much looking forward to the time when he will be able to get back out in the crowds again.
School is doing okay and he is plugging along at a real good pace. Hopefully he will be able to complete this year by the end of May, but if not, at least we have til the end of June due to the setback at the beginning of school.
We return to the clinic on Monday, 3-1 for another MRI on his pancreas but won't have results til the end of next week. Additionally we begin another three months of intensive chemo where we will be at the clinic or in the hospital at least 15 days out of 30 each month. We do have a few scheduled in hospital stays but hopefully they will be for two days or less each time. If all goes well, we will officially enter into the maintenance stage on 3-2-10 which means he only has 3 more years of chemo left. I know that is a long time, but the treatments will vary in increments of 30, 60 or 90 days regimes, and some are more intense than others, but at least we are finally at the final stage of treatment. According to this, he should finish just prior to graduating high school. He was able to meet some other kids that have similar issues, through Courageous Kidz, and is even more interested in going into the medical field after college.
Arielle was accepted to CSU and will be starting there in the fall in their nursing program and we are so very proud of her. She is still going to school full time (til May when she graduates) and is working two jobs. Her only day off is Sunday so at least we see her then.
Please know that we are ever so grateful for the continued prayers for all of us, especially Jon, and thank you each and every one of you for taking the time to pray for him! Take care.
Unfortunately, due to the intensive chemo this month, Jon has lost all of his hair again. He is okay with this as his response has been "oh well, it'll grow back eventually". I am truly amazed he has such a good attitude despite the issues he has to address.
His biggest concern is lack of socializing. He really misses all of his friends and teachers and is very much looking forward to the time when he will be able to get back out in the crowds again.
School is doing okay and he is plugging along at a real good pace. Hopefully he will be able to complete this year by the end of May, but if not, at least we have til the end of June due to the setback at the beginning of school.
We return to the clinic on Monday, 3-1 for another MRI on his pancreas but won't have results til the end of next week. Additionally we begin another three months of intensive chemo where we will be at the clinic or in the hospital at least 15 days out of 30 each month. We do have a few scheduled in hospital stays but hopefully they will be for two days or less each time. If all goes well, we will officially enter into the maintenance stage on 3-2-10 which means he only has 3 more years of chemo left. I know that is a long time, but the treatments will vary in increments of 30, 60 or 90 days regimes, and some are more intense than others, but at least we are finally at the final stage of treatment. According to this, he should finish just prior to graduating high school. He was able to meet some other kids that have similar issues, through Courageous Kidz, and is even more interested in going into the medical field after college.
Arielle was accepted to CSU and will be starting there in the fall in their nursing program and we are so very proud of her. She is still going to school full time (til May when she graduates) and is working two jobs. Her only day off is Sunday so at least we see her then.
Please know that we are ever so grateful for the continued prayers for all of us, especially Jon, and thank you each and every one of you for taking the time to pray for him! Take care.
Sunday, January 24, 2010
sorry!!!!
Hey everyone sorry about not posting for a while, we were having some technical difficulties.....Jon is doing pretty well. We had an awesome Christmas, first because we were home and able to visit with all our family and secondly because of the generosity of those christmas elves from all over that helped us make it through this time of year. If not for the blessings that we recieved, the chances of us making it through were slim. These blessings overwhelmed us and we are so thankful for everyones support and prayers.
Jon is still on a no fat no sugar diet, but is maintaining his weight and is making real good progress on his school work. We have been back to the clinic for more chemo and tests but due to him remaining relatively pain free, we have no plans of immediate surgery.
We will start his next phase on February third after having more tests run next week. This is a new chemo for him so we need prayers to help his body to handle it without the dreaded side effects.
Jon's hair is growing back rapidly and he does not plan to cut it for a very very long time. We cant wait to see if it glows in the dark from all the radiation. :)
Again we appologize that it has taken so long to update this blog but we have fixed it now and want to thank everyone for their prayers and continued support!!! God has truly blessed us.
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