Jonathan's Leukemia

May 28, 2010

2010-05-28T12:01:00.001-07:00

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!

May 16, 2010

2010-05-16T17:42:00.001-07:00

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.

April 23, 2010

2010-04-23T16:13:00.000-07:00

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

2010-04-17T20:20:00.000-07:00

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

2010-04-15T07:27:00.001-07:00

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

2010-04-15T07:11:00.000-07:00

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.

March 15, 2010

2010-03-15T07:09:00.000-07:00

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.

February 27, 2010

2010-02-27T18:14:00.001-08:00

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.

sorry!!!!

2010-01-24T08:06:00.000-08:00

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.

December 18, 2009

2009-12-18T15:56:00.000-08:00

Christmas is almost here!!!! Hello everyone, sorry to be so long, we had a bug in our system and finally were able to correct it last night.
Jon is doing fantastic, he was able to attend the boy scout Christmas party last night and had a blast. He was also able to go by and visit with the teachers and staff at Rollings Middle School of the Arts yesterday and was so overwhelmed by how much everyone had been thinking of him and asking about him. He really enjoyed getting out and seeing people he knew again!
We have been fortunate to be able to be home for quite a number of days and enjoying Jon being home and feeling good for a change!
We did find out from the GI doctor that they intend to run another test on January 4th to determine if anything has changed regarding his pancreas and if not I believe they will continue to wait a while longer before they decide to do anything. He is finding more and more fat free and sugar free foods that he likes and we are finding new ways to cook some of his favorites so he can eat them as well. He will be on enzymes and insulin for the rest of his life but is adjusting slowly to that development as well.
He is so very excited about Christmas and we wanted to thank the elves who have made it possible for him to have such a wonderful one this year! We sure could not have done it without all of you!!!!
We returned to the clinic today and his numbers are way up so that means we will be able to enjoy our whole family and friends during the holidays and he will be able to get out a lot more and visit with his friends. He is so looking forward to that as well as feeling so good all day long, no pain and no sickness!!!! What a blessing that is for him! We thank all of you so much for your prayers and for The Lord making it possible for a VERY BLESSED CHRISTMAS!!!!
Merry Christmas to all of you and we will keep you posted on his progress.

Update

2009-12-07T10:39:00.000-08:00

Hi everyone,
Sorry to be so long but last Sunday Jon ran a temperature over 101 so we ended up back at the ER and than admitted Sunday night. He was already on antibiotics at home but they added a couple more to ensure he was protected from whatever his body may have been fighting.
While we were there we were able to get the MRI completed and they did not see any change from the week prior. No improvement but not any worse either. We were not able to meet with the GI docs before we were released on Wednesday but are scheduled for a meeting of sorts tomorrow at the clinic to determine what the next course of action is regarding his pancreas.
They really moved fast Wednesday night and we left downtown and got into our neighborhood just as the storm hit. We were very blessed we did not have to travel the entire way through all of that and were very glad to be home safe.
He is in good spirits and we are having fun learning new ways to cook foods fat free. Jon has been able to get back on his school work including his online course as he has midterms in medical terminology next week.
We hope to have some answers tomorrow and will keep you updated as we know. Thank you for keeping him in your prayers.

We need your prayers please

2009-11-27T14:05:00.000-08:00

Hi everyone,
Well, Jon was not able to receive chemo this week due to his numbers being so low and in fact had to have another ultrasound on Monday. We also had to return on Tuesday for a CT scan as they noticed something on the ultrasound and had to get more information. We were only supposed to get the scan Tuesday morning, visit with his radiologist for a followup visit then go by the clinic to get his tube out and go home.
Jon made a deal with his doctor on Monday, the 23rd that is she would take the tube out for one week, he promised her he would eat and gain 4 pounds. She agreed to that with the condition that if he did not then they would be looking at putting a tube in his stomach. They left the tube in til Tuesday as the CT scan was done with contrast and rather than him drinking it they put it in his tube so he would not have to taste it.
We left the hospital from the CT scan, saw his radiologist then when we got to the clinic they had already received the CT results and because of the issues, they admitted him to the hospital and put him on antibiotics. They were able to remove the tube and he did begin eating so that was a plus.
We received very concerning news regarding his pancreas and will be returning next week for an MRI then will meet with the doctors to determine how they are going to fix the problem. Because of this situation he has been placed on a completely fat free diet and has to take enzymes with every bit of food since his pancreas is not working at all right now.
We won't know exactly what will have to be done til next week but in the meantime please pray for him as we do know that surgery will be required in the immediate future. We were able to go home from the hospital Wednesday night so we were home for Thanksgiving but could not be with our whole family due to his numbers being so low. We made a new memory with just the four of us and even used the good china! I think that is the first time he has even seen it outside of our china cabinet. We plan to use it more often though, as it is a shame to just let it sit there.
We hope all of you had a wonderful Thanksgiving with your families and we are looking forward to being able to visit for Christmas if at all possible. Take care and thank you.

November 17, 2009 - he gained weight!!!

2009-11-17T14:22:00.001-08:00

Great news, Jon has actually gained some weight since last week! Miss Cindy, our special nurse at the clinic, wanted to check to ensure Jon did not have rocks in his pocket. So we are closer to our weight goal and hopefully by this coming Monday, he will reach it and then have another week to maintain it and then the tube can be removed.
We did end up at the clinic all day Monday, as Jon's numbers were critical again and he had to receive a unit of blood. Hopefully that will help bring his numbers and his stamina up so he can feel better.
We had made a makeshift ping pong table out of 6 foot tables on our back porch and Jon was really looking forward to playing, however, the balls would not bounce properly. His grandparents, Mr. and Mrs. Massenburg, had a ping pong table that had no legs so they gave us the table and we put it on top of the two 6 foot tables and now we can play. He wears out easily but at least he is spending some time outside and having fun at it!
We rearranged his nutritional feed and he seems to have a little more appetite by late afternoon or evening and is eating a bite or two here and there. It's something so we will take it!!!
We do return next Monday for another procedure and more chemo (3 different doses) and hope that his numbers will be up by then.
Thank you for caring about him and for all the prayers you send our way!

November 12, 2009 At Home

2009-11-12T06:49:00.000-08:00

We were able to go home on Friday afternoon but with the tube still in his nose and having to be nutritional feeds for 10 hours a day. We returned to the clinic on Monday and because he became sick again on Friday, Saturday and Sunday, he had only gained one pound. We were told he would most likely have to keep the tube for another 3-4 weeks until he reached his weight goal and maintained it. You can imagine how frustrating that was to hear!
We also found out that his pancreas was still swollen from his prior bout with pancreatitis so he was not able to receive one of the chemo medications on his protocol. They plan to wait til the next dose is due in 3 weeks and check his pancreas again to determine if they can administer it at that time.
So now we spend a lot of the day with him hooked up to the pump for the nutrition and he is not interested in eating otherwise. It's like a catch 22 situation, he won't get the tube out til he eats and he doesn't want to eat until the tube comes out. We have received a wealth of information regarding different things to try to get him to eat and hopefully something will appeal to him enough to overcome his apprehension.
He is still able to do schoolwork and has really become adept at playing halo. He received an X-box from his Aunt Patty Ann and since he has never played on one before thought he would not be very good. Well...he is loving it! I have to limit his time now so he can keep up with his schoolwork.
Our three weeks of daily chemo ended and we are on the schedule now for only weekly visits for a little while. It is so nice not to have to spend every day at the clinic!
We so appreciate everyone keeping up with Jon and know that we still need the prayers to help him overcome this . Thanks so much!

Back in the hospital - 11-5-09

2009-11-05T11:59:00.000-08:00

Jon was able to go the scout meeting and actually was able to join his buddy's at James Island County Park during their campout. He had to stay in a camper but he was able to spend some time on Saturday and Sunday with the troop. He really enjoyed that, just being able to get away from home and the hospital was such a treat in itself!!!
We started back on the daily chemo and it has taken a toll this time on him. He has been pretty sick and not able to keep anything down so has lost quite a bit of weight.
Because of that we are back in the hospital as of Monday, 11-2-09, as they had to put a feeding tube in him and are loading him up with the calories and protein and other stuff his body needs. He has put on several pounds since Monday and we anticipate being able to go home tomorrow. He will have to keep the feeding tube in over the weekend and when we return to the clinic on Monday, if all is okay and he is eating and drinking again, they will take it out during his procedure.
He is not a happy camper with the tube but understands it is necessary at this time to help him be able to handle the chemo.
He is doing pretty well with his schoolwork and is really enjoying the online medical course he is taking.
Please keep him in your prayers to give him strength as he is pretty beaten down by this complication. Thank you.

October 21, 2009

2009-10-21T12:07:00.000-07:00

Sorry to be so long again in between postings, but things have been a bit on the hectic side.
The good news is we came home from the hospital last Thursday night, his pancreatitis was on the mend, his pneumonia was getting better, he came off the blood pressure medicine and the antibiotics and we are hopeful the diabetes will go away soon.
While we were in the hospital, we received the VERY BEST of care from all of his nurses. I can't seem to find the words that describe the ultimate in patience and understanding exhibited by every one of the nurses who cared for Jon. We were fortunate to have Abby (Jon's favorite) back for a few shifts, Nicole (such a sweetheart) for the weekend nights, Stacy, who really had the patience of a saint with Jon throughout all the time he could not eat or drink, and all the others! They truly made us feel like a part of their family with all the loving care they each provided.
Friday and Saturday, it was a little touch and go as to whether we would have to return to the ER due to a few complications but fortunately, we worked through them and were able to stay home.
Monday, we returned to the clinic for daily chemo treatments and will be ongoing for 3 weeks now. So far he seems to be improving daily from his issues while in the hospital. We really appreciate all the prayers and know they work as he was setting records as to how fast he recovered from the pancreatitis, according to the doctors. I know Jon felt like it was taking forever, but at least we did not have to stay up to 4 weeks, like others have had to do with the same illness.
His numbers are really looking good at this time and we are hopeful that he will be able to attend his boy scout meeting on Thursday to see all of his buds.
We have about 5 more weeks to go and if all that goes well, we should be able to go on a maintenance program that will decrease the amount of time we have to go to the clinic to once every 5-8 days for awhile.
He is able to do schoolwork again this week and started his medical terminology class online today at the clinic. We are hopeful that he will have a lot of good days and be able to catch up on his schoolwork.
Take care and again thank you for the prayers.

October 9, 2009

2009-10-09T16:41:00.000-07:00

Well, we did finally get the last dose of radiation today so we are completely finished with that!!!!! YAY!!!!
However, Jon has developed pneumonia and had to receive a transfusion today that he is having a reaction to. He is still in pain and still cannot have anything
by mouth. We have several doctors monitoring almost hourly to help overcome these challenges so please please keep him in your prayers as they do make a difference!
Thank you so much!!!

October 7,2009

2009-10-07T11:46:00.000-07:00

Well, we are almost finished with radiation, and that is good news as we are back at the hospital due to complications from the chemotherapy. We had to go to the ER early Tuesday morning as Jon developed pancreatitis and is currently on a morphine pump for the pain. We have been told this is a side effect from some of the chemo medicine that he has had to take. Alongside this complication, since his pancreas is not working as it should, he is back on insulin since his blood sugar has also been affected.

He cannot take anything by mouth including his medicines so those, with his liquids and food product (in liquid form) are all being administered through the port in his chest. His numbers have dropped as well so he cannot have any visitors but hopefully will be able to reduce the amount of morphine soon so at least he can correspond over the internet. We do not yet know how long it will take to get him better but please keep him in your prayers and we will keep you posted on his progress.

Thanks so much for thinking of us.

9-28-09

2009-09-28T11:19:00.000-07:00

Hello everyone....
Just wanted to let ya'll know Jon is doing pretty well. Due to so much intense chemo these past 3 weeks, his numbers are very low and he cannot have visitors. He is staying in touch with a lot of people on the internet and has finally started school. He has been able to work on a lot of his school work while we are at the clinic and seems pretty excited about getting back to doing things his friends are doing. We are fortunate that his home bound teacher only lives two blocks away and we have known her for several years.

We had a little setback with the home health services which caused return trips to the hospital and the clinic last weekend but we are working on getting that corrected for the future.

We actually started radiation today and it took longer to drive there and back than it did for the actual treatment...but that's okay with us!! Jon was pretty anxious about going since it required him to be put in "the mask" but he made it through like a champion!! Now, only 7 more treatments and we will be finished with radiation. We will actually have an entire week off before we return to daily chemo treatments. We are sure looking forward to that!

Jon wanted to let everyone know that he is doing so well and tolerating all the drugs and procedures so well due to all of your prayers. He knows that he is not in this alone and that means a great deal to him as well as to the rest of his family. Thank you so much for keeping him in your prayers and we will keep you updated. Take care.

Update 9-15-09

2009-09-15T12:11:00.000-07:00

Hi everyone,
We are home and have been since Saturday evening!!! We have arrangements made with home health services so we don't have to return to the clinic for a couple of days. Jonathan is still tolerating the medication extremely well and he is feeling good. Thank you for all the prayers as we know that is why he is doing so well!!!
We return to the clinic on this Friday for a small procedure, but only for a day, then not til the following Friday for another procedure a little more indepth than the one previous. He is scheduled to start radiation on the 28th which means daily trips to MUSC for about 3 weeks in a row.
But, good news we finally made the arrangements for him to begin school, some home bound and some online so he will be able to get started with that hopefully by Monday of next week.
He has been enjoying talking with his friends on the internet and he has been able to get outside for short intervals these last couple of days. We are all so happy to be at home again and try to return to some sort of normal routine.
Thank you for your continued thoughts and prayers as we go through the process of getting him well.

Labor Day Update

2009-09-06T18:32:00.000-07:00

It is Sunday night and we are still in the hospital receiving chemo treatments daily, however, it looks like we will be released sometime tomorrow, return to the clinic for several hours on Tuesday, then be home til at least Friday morning. At that time, we will have to be admitted to the hospital again but hopefully only for one night and two days.

We are getting into the daily treatment protocol of the chemotherapy and so far Jon is tolerating it very well. At least no more fever since Tuesday late and his numbers have come up some.

Thank you all for keeping us in your prayers and we will keep you posted as we progress through his treatment.

Update

2009-09-01T17:13:00.000-07:00

Just when we thought we were heading for the home stretch yesterday, Jon spiked another fever so we are still at MUSC and looking for perhaps the end of the week as our discharge date.

We received a very special gift on Monday from Rollings Middle School of the Arts where Jon just completed three years with his core in vocals. Jon received a card designed by several students and signed by every teacher at Rollings, so you can imagine how large the card was!!! What an uplifting gift, he was truly touched by this and we have it hanging on his door. Thank you so much to everyone at Rollings for ALL of your support and prayers!

We also received a very special copy of "God Does Have A Sense of Humor" by Rob Ballister. An autographed copy in fact, from Mr. Ballister, himself !! It is a wonderful book and has brought a lot of laughter to all of us. Thank you to Micki Ballister, our nurse anesthesist who made this possible.

Even though we are spending more time in the hospital than we thought we would be we are still blessed with all the angels taking care of us. They treat us like family, spend time to see that we have all our needs met and we could not be in a better place through all of this. Thanks so much to Abby - our special angel, Karen, Andrea, Katelyn - who is such a charmer, Amanda, Seth, and all the rest of the staff. We really appreciate all that each of you do for us!

Hospital Admission

2009-08-30T13:27:00.001-07:00

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!!!!

2009-08-29T05:22:00.000-07:00

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

2009-08-29T05:03:00.000-07:00

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

2009-08-23T20:08:00.000-07:00

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

2009-08-23T19:58:00.000-07:00

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

2009-08-16T17:38:00.000-07:00

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

2009-08-12T17:31:00.000-07:00

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

2009-08-09T07:18:00.000-07:00

Home at last

2009-08-09T07:12:00.000-07:00

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.

2009-08-08T05:43:00.000-07:00

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 :)

2009-08-02T08:41:00.000-07:00

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 :)

Day 2 of Chemo Therapy

2009-07-29T11:53:00.000-07:00

On Monday the 27th 2009, Jonathan Case was
diagnosed with Acute Lymphoblastic Leukemia (ALL).

He is 14 years old and is supposed to be starting as a freshman at Summerville High School in the Fall. The doctors however, have put us on a three year road to recovery therefore he will not be starting school until the cancer goes into remission.

There are two tyes of Leukemia. There is acute and chronic, each of them are argueably the worse of the two. The acute kind comes on all at once and it worsens very quickly but 60% of children who have it go into remission and have no relapes.

Jonathan started feeling bad about last week. He then developed a rash on his neck that started to spread. His neck swelled due to 7 swollen lymph nodes. They put him on a high doseage of an antibiotic to try and knock it out. After a couple of days he broke out in a rash on his body that resembled chicken pox. It was petikei which is where capilaries in your body burst. We saw the doctor again the next morning and ran some tests. Monday afternoon the cancer was confirmed and we started chemotherapy and he had a bone marrow biopsy and a spinal tap.