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Friday, December 26, 2008 12:13 AM CST

Merry Christmas everyone!

We have had a wonderful Christmas AT HOME. We have been so blessed that in all the years of cancer battling that we have not had to spend Christmas in the hospital. Jake is upstairs with Luke and a buddy playing video games as we speak. We spent all day yesterday playing video games of some sort. The kids got a Wii fit and I must say that it is a very cool game. Of course, I am completely unfit. Kala is home from school and her first semester went very well - she passed all her classes. Luke and Jake have completed the first semester of high school and they both did very well with their grades as well. Most important Jake still loves it. He even went to his class Christmas party at his teachers house. Thank you for the year of prayers and constant support for our family. It would not even be possible to function day to day without them.

Please continue to pray for our family in the coming year.

Merry Christmas and Happy New Year,
Kim

Monday, December 8, 2008 3:22 PM CST

Merry Christmas, Merry Christmas, Merry Christmas! We met with Dr. Kushner this afternoon and he is sending us home! The NB is stable, and Jake's counts are incredible. He has 326 thousand platelets. So, we are picking up 2 rounds of Temador and heading to Georgia tomorrow. He will start oral temador tomorrow and complete a 5 day cycle. He will do another 5 day cycle the first week of January and then we will return the 3rd week of January to re-evaluate. There is a lot of optimism in the clinic today for what 2009 will have to offer in the treatment of NB. I will be glad to get home tomorrow and then excited to return in January for the possibility of future treatments.

Lee

Sunday, December 7, 2008 8:49 AM CST

Jake is feeling good. We flew in to NYC on Thursday and had mibg and marrow pulls. The preliminary results are "stable". We are meeting with Dr. Kushner tomorrow morning to get the "plan of attack". Jake is hoping to get the light dose and get home by the end of the week, but I will be shocked if Dr. Kushner agrees. I am very thankful for the stable report. I will update again after the meeting in the morning.

Lee

We are pressed on every side by troubles,but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 2 Corinthians 4: 8-9

Thursday, December 4, 2008 6:04 PM CST

Lee and Jake are in NYC. Jake's big scan will be tomorrow morning followed by bone marrow pulls. Jake is only having two test this time, but they are both very important. Please be in prayer tonight and tomorrow for Jake and the rest of us while we wait for some answers.

Love,
Kim

Sunday, November 30, 2008 5:11 PM CST

I hope everyone had a wonderful Thanksgiving. I know we did. It was wonderful being at home. Last year we were in inpatient at MSKCC and ate turkey dinner in Jake's hospital room. We were all together, but this year was great. We did not get to have all of our family here, but the five of us and my parents had a great day. We even went out to the boys wiffle ball field and played a game (I am still regretting that decision just a little), but it was a beautiful day - sunny and 75. Kala was home from school and we so enjoyed having her here. She had to head back to school a little while ago and we already miss her. We had several Wii tournaments while she was home and they had a lot of laughs at Lee and I trying to play. We both got better and even took them down a notch or two before it was over.
As much fun as we had this week it is almost time to get back to business. Lee and Jake will leave for NYC Thursday morning. Jake will have MIBG injection on Thursday and the scan and bone marrow pulls on Friday. The plan right now is to stay over the weekend and start some type of treatment on Monday. We have absolutely no idea as to what is next. We are both starting to get on edge as the time draws nearer. Please pray for good scans and for the doctors to have a good plan for what is next.

Love,
Kim

Friday, November 21, 2008 7:41 AM CST

After a lot of work, Jake finally recieved his temador. We are very glad to have MSKCC. They are a wonderful and understanding hospital. Dr. Kushner decided to allow Jake to recieve a round of oral Temador as a "booster" between high dose rounds. This sounded great and would allow Jake to stay in school and be in Valdosta for the Thanksgiving holiday. The problem was Jake's insurance here in the State of Georgia REFUSED to pay or allow him to recive it, because Temador is not an "approved drug for Neuroblastoma". We appealed to our hospital group in Atlanta,CHOA, but the doctor there refused to help. That is another story that I will follow up on at a later time. After a few days of emails and phone calls we were finally able to get the chemo from MSKCC and he started on Wednesday of this week. He will finish on Sunday and should have little to no side effects. The plan now is to have a great Thanksgiving and then return to NYC on December 4th and do the scans followed by another round of chemo.

Lee

Wednesday, November 12, 2008 9:01 AM CST

Change of plans! Jake is going to get to stay home for a couple of more weeks. Yeah! He will be doing temadore and staying in Valdosta. Jake and I will then head back up to NYC for scans and bone marrow pulls on December 4th. After that, he will do another round of chemo in NYC and then we will head home for recovery and Christmas. He is feeling good and is back at school. I will update as things change.

Lee

Monday, November 10, 2008 7:18 AM CST

I just dropped Jake off at school. His ANC rocketed to over 2000 on Friday and he did not need platelets or whole blood. His platelets were still low at 44,000, but they had not dropped from the infusion he had on Wednesday. Hopefully they are starting to bounce as well. I will take him to do bloodwork after school today for hopefully one final check before he heads back to NYC. Which can you believe will be next week for two days. They want to repeat his MIBG scan and bone marrow. Jake and Lee will fly up Tuesday morning and return Wednesday afternoon; so, hopefully he will only miss two days of school. Then we will have to sit back and wait as to what they want to do next. They are still throwing out the new NK cell program, but we will see as usual most of the decision will be based on these scan results.

Pray, pray, pray,
Kim

Wednesday, November 5, 2008 12:26 AM CST

Jake is inching ever closer his anc is now 962, but his platelets are dropping even more. They are extremely low, critically low actually. We are headed to our local hospital to get platelets. His red blood is not great, but hanging in. He will more than likely need whole blood on Friday as well as more platelets. It looks like school will be pushed back until Monday. That will have him missing three total weeks of school and this was just a medium dose of chemo. Well, please keep praying.

Kim

Monday, November 3, 2008 7:43 PM CST

Jake had to have a platelet transfusion on Friday. He was feeling so well over the weekend that we decided to come home on Sunday; so, we have made it to Valdosta. We checked his counts today and his ANC is only 476 it needs to be above a 1000 so he can go back to school. His platelets are still severely low. We are shooting for being back at school on Thursday, but we will have to wait and see. He is very ready to go back. We are all thankful to be one step closer by being at home.

Thank you for checking on us.
Kim

Wednesday, October 29, 2008 2:54 PM CDT

We are in Atlanta. Jake's counts are still "crashing". All in all he is in good spirits. He is still eating and drinking good. We are staying at the Ronald Mcdonald house in Atlanta for a couple of days. It is a lot different than NYC Ronald house, but I am grateful to have it. The plan is to hang out for a few more days and continue to monitor his blood counts. He is at 18,000 platelets and his anc is below 200. We are staying away from public places and just sitting in the room for now. We will go back on Friday to check and see if his counts are recovering and if so, we will head home. I will update as things change.

Lee

Monday, October 27, 2008 11:40 AM CDT

I just wanted to begin by thanking everyone for their prayers for us last week while we were in NYC. The week could not have gone any better for Jake. He experienced absolutely no nausea which was miracle. Jake has always been very sick with the chemos that he was given - I do realize the dosage was less, but we are still so grateful. We were able to fly back to Atlanta on Saturday morning. I came back to Valdosta on Sunday to try and get some work done at the bookstore. Lee is staying in Atlanta with Jake and doing his bloodcount checks. He went this morning and his platelets had dropped from 141,000 on Friday to 41,000 today. They do not like to transfuse until around or under 25,000. Jake has always had severe nosebleeds when his platelets get low, so much so, that our doctor in NY will sometimes transfuse when he drops below 50,000. At this time we are going to just watch him closely. He may or may not need any on Wednesday the drops now will not be quite so significant. His red blood cells were still very good. He ANC has dropped into the danger zone for infection. He is not at zero yet, but it is just a matter of time. We know it will go to zero the prayer is that is will not stay there long enough for him to catch somekind of virus or other infection. We are almost to bottom so please begin to pray for a quick bounce.

Thanks for checking in on us,
Kim

Friday, October 24, 2008 12:00 AM CDT

We are about half way done with day 5 and Jake is still feeling good. The medicine is not really making him that sleepy anymore. We have had to take a diladin or two for the jaw and leg pain he is experiencing. He has done so well with the nausea that we are flying out tomorrow morning. We will hang out in Atlanta next week doing labs and watching his counts. We now begin to pray that his counts will recover quickly and that maybe we will remain fever free.
Please keep my dad in your prayers he had to have a balloon placed in his heart today for a blockage. The doctors said he had a 70% blockage and they were able to get it to 30% with the balloon. They believe the heart valve they put in several years ago is still operating properly which is good news. He has to stay overnight in the hospital in Valdosta, but has been given permission to return to work on Monday.

Once again our family thanks you for checking in on us,
Kim

Wednesday, October 22, 2008 7:22 PM CDT

Day three of treatment is now behind us. Jake is still doing okay. The sleeping has actually been alot less today. He is still eating pretty well. He has started having jaw pain which is common with vincristine. He is also having his traditional leg cramps. We were able to lose backpack buddy tonight which is for hydration. His electrolytes are doing well so far. Jake and I are still so thankful for how well he has been doing this week. Please say a special prayer for our friend Sydney - she is also here this week doing 3f8 treatment. She has had a very rough week so far; so, please pray that her last two days get better.

Thanks for checking in,
Kim

Tuesday, October 21, 2008 6:16 PM CDT

We have made it through Day 2 remarkably well. Jake is sleeping alot, but so far no sickness. He has not slept as much today and has still be able to eat. Jake and I are both so thankful for every minute that he goes without being sick. We both know what a blessing it is. Please continue praying for the remaining three days and thank you for checking on us. It means so much to know that people are checking on us and praying right now.

Kim

Monday, October 20, 2008 8:21 PM CDT

Day 1 is over. It was a very long day. We arrived in clinic at 9:00 and returned to the Ronald House at 6:15. We are doing what they are considering an intermediate dose of chemo -somewhere in the middle of high and low dose chemo. I did get to have a meeting with Dr. Kushner today and I feel better about changing our routine. I may change my mind as the week goes on, but so far so good. Jake has not had any issues yet and was able to eat dinner tonight. He has slept through most of the day. We started him on a brand new nausea drug (well new for him) today, but he has made him very sleepy. It is a drug they have been using for adults and it has worked really well for them. Keep your fingers crossed that Jake will have the same luck.

Kim

Sunday, October 19, 2008 3:10 PM CDT

Jake and I have arrived in NYC to a little bit cooler temps than we were having in Valdosta. Jake is already out and about in the Ronald House hanging out with buddies. I am using this time to try to get some work done for the bookstore. Tomorrow is going to be a very hectic day. I am going to have a meeting with the doctors before we get started with any treatment. Lee and I want some more answers and we want to be sure this is the right course for Jake. Please pray for us to get the answers we need and for the assurance in our treatment plan.

Thanks for checking in,
Kim

Monday, October 13, 2008 12:30 AM CDT

Good Morning - I hope everyone enjoyed their weekend. Jake and I had a good laugh on Saturday we went and watched Luke in our churches 4th annual "mudbowl". Yes, you read that right MUDbowl. They played a flag football tournament in the mud. They had a great time and we had even more fun watching.

This is Jake and Luke's birthday week. They will be 15 on Wednesday the 15th. I cannot believe it - they both will possibly be behind the wheel of car soon. Jake is going to wait a little while longer before he takes his learners test, but Luke will be going soon.

Please continue your prayers for Jake to be able to recover quickly and for this chemo to work wonders on the cancer he has. Pray for Jake once again to amaze the doctors; so, the only explanation they have is that our Lord is working a miracle in Jake's life.

Thanks for checking in, but most of all thank you for your prayers,
Kim

Friday, October 10, 2008 10:09 AM CDT

I had a conversation last night with nurse Linda. It looks like there is a considerable amount of change to Jake's cancer. We are going forward with the high dose chemo. The main concern we all have at this point is Jake's ability to rebound. Please pray earnestly that he will walk through this process with relatively no odd problems. The secrect to success will be in his ablility to overcome the adverse effects of the treatment itself. He has been fighting this for a long time and has endured many of these treatments in the past, but the doctors know that at some point his body will stop or slow down on rebounding. Kim and I are going to have a difficult decision in the coming weeks on where would be best for Jake to recover. We know Valdosta is out, becsause they have no pediatric oncologist, I have started the process if we want to return to Atlanta, and we can always stay in NYC for recovery. We are trying to get our businesses set up for our absences, we are getting Luke set up, and hopefully the next few weeks will go smooth and Jake can overcome this horrible disease. Please pray for his endurance and fight to continue.

Lee

Thursday, October 2, 2008 3:21 PM CDT

Okay, we have somewhat of a plan. In fighting cancer the fear of the unknown is always the scariest part to me. I like to know exactly where the problems are, and exactly what the Doctors want to do about it. I drive our poor doctors crazy sometimes. The plan is: Jake and Kim are going to NYC on October 19th and he will start high dose chemo cyclophos-topatecan-vincristine on Monday. He will get a full week and then they will stay over the next week and watch his counts drop. We have had problems in the past with counts dropping when we are at home and since we do not have an oncologist in Valdosta, and our onclolgist in Atlanta is no longer availible, we have had a lot of confussion as to what to do. It has been very frustrating for all of us and all of them. So, we will hang out and if a problem occurs, Dr. Kushner will be able to handle it on site.

After he recovers, we will go back to NYC in November and do another round of high dose. Then in December, maybe a NK Cell 3f8 program. But, as many of you know, you can not plan that far out in advance. For now, round 1 of high dose chemo is all we know for sure. It will change several times over the coming weeks. Please pray that Jake will have the stamina and the grit to endure the next few weeks without any major problems.

Lee

Wednesday, October 1, 2008 2:37 PM CDT

After 6 days of wondering, worrying, and PANICING, will still know very little. I recieved an email today that is vague to say the least. It is as follows:
BM biopsies show no neuroblastoma. BM aspirates - final results tomorrow morning.

MIBG shows very subtle new finding in R arm - can only say it looks suspicious. PET scan does not help.

Not straightforward, for knowing how to proceed.

Let's at least wait until tomorrow's results about the BM aspirates.
The good news is biopsies are clean. Jake has not had clean biopsies since October of 2007. We have been in this fight for 7 years and I am as preplexed as I have ever been. I often tell other family's that "no news is good news" when you are dealing with this, but now I am having to tell myself.Please continue to pray for us.

Lee

Friday, September 26, 2008 2:56 PM CDT

Let me start by stateing I HATE this time of year. Jake was officially diagnosed on Oct 31, 2001. All of his major relapes through the years have occured in September or October. I just got off the phone with Dr. Modak, and Jake's cancer is spreading. We have done 3 days of chemo and 3 days of test. Preliminary, it looks like the cancer is in his hip, lower back and right arm. It appears to be in his bones and bone marrow. We have known about the hip and lower back all summer, but the arm is new. The team is going to meet on Tuesday and review the situation and then email or call on Wednesday. I would guess they will want to do radiation and probably start in 2 weeks, but we will see. I will update again as soon as I know more. Also, our flight was canceled today and we will not get to go home until tomorrow. We are stranded at the JFK airport courtyard until 8 am tomorrow.


Lee

Thursday, September 4, 2008 6:16 PM CDT

Jake is feeling good, hanging out, and going to school. I love the times when I can write in this journal that everything is quiet and normal. In the world that we live in we know what a blessing and miracle a day like this is. I just wanted to take this time to show how grateful our family is for this time that we have been given. It is almost scan time again. We already know that Jake has two small spots and a tiny bit of bone marrow involvement. Our prayers are that the "maintaining" pattern that Jake has been on is doing its job. For me one of the hardest things about this cancer is not doubting the decisions you make in the care of your child. The treatment that Jake is on right now is relatively easy on him. It is allowing him to be a normal kid which he has not had in several years and I personally am so terrified because I do not want this new way of life to change for him. Jake has always had an incredible attitude through all of this, but he is in a very happy place right now. He is even talking about going to the homecoming dance next week. Jake has fought so hard in his life to get to a place like this; so, friends please begin praying for his upcoming scans. The scans will begin on September 24th.

With love,
Kim

Monday, August 25, 2008 3:27 PM CDT

What an amazing Warrior Jake Miller is! We flew back from NYC Friday into tropical storm Faye, he completed 5 days of irrono in only 3 days, he took his last 2 days of temadore at home and returned to school at 8 am today. He has had another GREAT day at Lowndes high. We breathe a sigh of relief every time we pick him up and he has a smile on his face. It is absolutely amazing to me every day he completes his school work. We are set up to return next month on September 23 and do another round and all of his scans. Until then we will go to school and work and be NORMAL. How awesome is that! I will update as things change, which they will.

Lee

Wednesday, August 20, 2008 3:01 PM CDT

Jake has just completed day 1 of 3 of chemo. It was long and boring according to him. We flew in last night and will be headed back home on Friday. Jake did not want to miss school. It is strange to say that since school has been non existant in Jake's past. I am very glad he feels that way though. The irrono/temadore should not cause to many problems for him, so he should get back to school on Monday. His blood was a little off today. He usually has great counts when he starts and they usually do not drop too much. But, his counts were a little low and we will have to watch them carefully. I will update again soon.

Lee

Wednesday, August 13, 2008 8:41 AM CDT

Well, we did not make it to NYC this week. Jake and I spent 7 hours in the Jacksonville airport on Monday. After 3 delays the flight was finally canceled. We have rescheduled his chemo for next week. Jake is back in school and doing great. He was glad to be back in school, which is amazing to me. He has never enjoyed or liked school in any way. However, so far he has looked forward to each and every day. Kala is now moved into her dorm at West Georgia. All of that went well last weekend. The first day of class for VSU is next Monday and things are crazy here at the bookstore. Please pray for Jake's continued success with school and that our book rush is very successful over the next few days. I will update again as things change.

Lee

Wednesday, August 6, 2008 5:38 PM CDT

NEW UPDATE FRIDAY AUGUST 8TH

Jake is a Rally Kid for the Rally Foundation an organization that donates a great deal of funding for childhood cancer research. We just received an email that a man has chosen Jake to run the Disney Half Marathon in honor of. Here is the link check it out it is a very nice honor. Just copy and paste to see
http://www.active.com/donate/rallyathletes/jamesdolan

Today is the day Kala leaves for college.

HAPPY BIRTHDAY TO LEE'S MOM!!!



Jake has had an amazing two days of school. He loves it!!!!!! I pray that this new happiness with school does not end for him. He did not get in the ag science class it was already full; so, he just stays with his special ed teacher for 4th block. He has had great stories of new friends each of the two days that I have picked him up. I have to fight back the tears as I am writing this, those of you who have followed Jake's site over the years know how dramatic school has been for him. To see him come to the car everyday with a smile on his face has been a dream come true. Luke is enjoying high school as well. Kala and I are finishing packing up her room tonight. College is so bittersweet. I am so thankful and proud that she has made it and is going, but the house will seem strange without her.

Keep us in your prayers,
Kim

Monday, August 4, 2008 10:53 PM CDT

We are so fortunate! Today, Jake was welcomed with open arms to Lowndes High School. We met with the special ed faculty and staff and they were AWSOME! Jake is very excited to be a high school student. This is a dream come true for Kim and I. I never imagined in October of 2001 that Jake would ever have this wonderful situation. The school is huge, scary, and exciting at all times. Jake will have Mrs. Elliott for home room and 1st block math, Coach Garner for 2nd block PE, back to Mrs Elliott for Special ed english, lunch and then 4th block Ag. Science. Doesn't that sound GREAT! He has not been in school since the 6th grade. We would ask for prayer and that God would allow Jake to be comfortable and do well. He met with the assistant principal over special ed today and she asked what she could do to make Jake feel at ease? He responded with the "hat" issue. Jake has a fear or concern about his slick bald head, she said no problem, she issued him a note from her allowing him to wear his ball cap anywhere and everywhere at all times. Luke started today at the same school and had a great day, Kala is moving to college this weekend. Like always we have a lot going on, but it seems to all be very positive. We are headed back to NYC next week for chemo, I will update after the first day of HIGH SCHOOL for Jake.

Lee

Friday, July 25, 2008 4:56 PM CDT

We are home! It was a fast and furious week with little or no problems. Jake feels great and I am glad for it. I still do not have the final results from Jake's test/ But, I have enough info that I do not need the rest. Jake has bone marrow disease and 2 spots that are "uptaking" mibg dye. The doctors are calling this "stable" and telling me not to worry. Jake will go back to NYC on August 11 and do another round of chemo. Then he will go back in September for the next round of chemo and more test to see what the cancer is doing. The type of chemo he is doing is not going to eliminate his cancer, but should keep it "stable" not growing or getting worse. I am not real crazy about it, I like to be on the offensive and attacking side of cancer fighting, but I have 100% confidence in our doctor that his plan is working. I will update as things change.

Lee

Tuesday, July 22, 2008 12:18 AM CDT

Jake and I are in NYC. He is doing another round of irrono/temadore. It looks like his cancer is in his left hip area and in his lower back. The mibg that he did 2 weeks ago showed these 2 areas as possible activity. we are going to finish this week and come back in August to redo all of thw test and the next round of chemo. I will update as things change, which they will.

Lee

Tuesday, July 22, 2008 12:18 AM CDT

Jake and I are in NYC. He is doing another round of irrono/temadore. It looks like his cancer is in his left hip area and in his lower back. The mibg that he did 2 weeks ago showed these 2 areas as possible activity. we are going to finish this week and come back in August to redo all of thw test and the next round of chemo. I will update as things change, which they will.

Lee

Monday, July 21, 2008 7:55 PM CDT

Jake and Lee have made it to NYC and finished day one of chemo. Jake was not real excited about going, but now that he is there he is doing okay. We really do not have anything new to report. Jake's test results are stable - Lee is hoping to meet with Dr. Kushner and get a better explanation of stable tomorrow.

Thanks for checking in and please keep praying.

Kim

Thursday, July 10, 2008 8:58 PM CDT

This was just one of those special days that I wanted to share with everyone. All Jake has talked about for the last few months was going parasailing. Well, we were able to send him up today and he had an amazing time. Lee and I both were so thrilled that he was able to do this. I hope everyone enjoys the pictures.

Thanks for checking in,
Kim

P.S. We still do not have any bone marrow results.

Monday, July 7, 2008 9:06 AM CDT

Dr. Kushner emailed us and the mibg is officially unchanged and last time we did not have anything that showed up. We still have not heard anything about bone marrows which did show a small amount of disease last time. We are having a great time at Luke's ball tournament, but it is very very hot.






Jake is feeling great. I have not heard any additional info from Dr. Kushner about last weeks test. I have come to realize that no news is good news, usually. We are headed to Luke' s baseball tournament today. He is playing in Ft Myers, Florida this entire week and Jake will be hanging out at the beach. I will update if I hear anything else from Kushner. Lee

Wednesday, July 2, 2008 4:00 PM CDT

Ct scan came back "good" according to Dr. Kushner. The mibg scan has not been read as of 4:00, but Dr. Kushner viewed it and said it looks "stable". Like always, I try not to read to much into Dr. Kushner's emails. Last scan in April there was no NB that showed. Does stable mean there is now? Or does stable mean it looks just like the last one? We will not have the bm results for a week or so. Jake is returning back up here on July 21 for the next round of chemo. Between now and then we are headed to Luke's ball tournamnet in Fort Myers, Fl. Jake is going to play on the beach and have some fun and Kim and I are going to try to do the same. I am sure in 2 weeks when we come back I will get an informed report of the test. If there is a problem Dr. Kushner will let me know before then. I will update next week with how Jake is feeling.

Lee

Wednesday, July 2, 2008 10:45 AM CDT

Jake is through with his scan and we do know anything. In all the scans past we have been able to view it and most times compare it to previous scans. Not the case this time. Lee said he got about a 10 second view. They have now posted signs that if you ask to see the scans you will be asked to leave the room. Lee and Jake then went upstairs for bone marrow pulls where Dr. Modack told him the computers were down and they could not pull up the scans. He said we should get an email in a couple of days. This is hard, we are so use to being able to look at the scans and know right away. Please keep us in your prayers over the next few days. Please pray for Lee and Jake to have safe travel home tonight. We will update as soon as we know something.

Kim

Sunday, June 29, 2008 12:10 AM CDT

June 30th UPDATE:
Lee and Jake arrived safely in NYC and after a very long cab ride they made it to the hospital for labwork and quick visit with Dr. Kushner. Lee voiced our concerns regarding the leg pain and of course all they could say is we will know something soon. Jake is still complaining - but he did say it only hurts when he walks. Lee and I are praying hard for it to be just from all of the playing he has been doing lately. Life is funny we are usually praying for time to slow down, but during scan week time seems to stop. Wednesday morning cannot come soon enough; so, we can see if we are dealing with anything. Please pray for these scans and for Jake. Thanks, Kim








SCAN WEEK! Jake and I are heading to NYC tomorrow for scans. This is always a scary time. You never know how your life can change based on the results from these test. Jake had a accident on the wiffle ball field yesterday and has a large cut on his leg. Nurse Linda is not going to be happy. I am so thankful that his has the opportunity to get injured on the field with buddies. His is complaining about pain in his legs which is never a good sign. But, that is why we do scans so that we will know for sure. We always hope the leg pain is nothing, but usually it is. I am trying to stay positive and hope for the best. There is an old saying: "prepare for the worst,and hope for the best". That is always how I have to prepare for scan week. We are flying up on Monday and returning on Wednesday. It will be a fast trip and hopefully an uneventful one. His mibg scan is Wednesday morning and I will let everyone know then. Thanks for cheking in on us.

Lee

Sunday, June 22, 2008 1:28 PM CDT

Jake's blood did not drop much at all and by Friday his platelets had already begin to rise. We are so grateful that he continued to feel well all week and did not have to have a g-shot to boost his white cells. After a month of shots daily sometimes two a day he and his arms have needed a break. It is a rainy day here in Valdosta and right now I am watching the boys have a WII tournament. They are playing Mario Olympics and it is a sight. I absolutely love normal days.

Thanks for checking in,
Kim

Tuesday, June 17, 2008 8:55 PM CDT

Kala and I have just returned home from her orientation at Univ. of West GA. We are both very tired it was nonstop for two days. It seems to be a real good fit for her, she was able to view her dorm today and she loved it.
We returned to find Jake feeling a little run down; so, we will have blood work done tomorrow to see where he is at. Hopefully, it is good and all he will need is a g-shot, but we will see.

Well, I see why college is mainly for the young - I am exhausted and headed for bed.

Thank you for your continued prayers for our family.

We love you,
Kim

Thursday, June 12, 2008 6:51 PM CDT

PLEASE PRAY FOR THE MONROE FAMILY - MARISSA WENT TO HEAVEN EARLY THIS MORNING. There are no words to say, but please pray for this sweet, sweet family. Our hearts are absolutely broken.





Jake and Lee have made it home. Jake has felt pretty miserable all day, but being home has already seemed to help. He has had a smile on his face since he has gotten home. Home is sometimes the best medicine of all. Jake is home until June 30th and then we will return to NYC for scans. He will then be off until the third week of July where he will come back for more chemo.

We are just doing the summer thing around here. Luke is playing baseball this week and on Monday and Tuesday of next week we will be going to Kala's freshman orientation.

Thank you for checking and please continue your prayers for a cure for this horrible disease.

Kim

Monday, June 9, 2008 12:41 AM CDT

What a roller coaster ride we are on. First of all Jake is feeling great. That is the main thing. I have had 3 different in depth conversations with Dr. Kushner today. The "magic bean Vaccine" is becoming a reality. I believe it will be out for some children in July. However, I do not think Jake will be one of them. Dr. Kushner wants to keep Jake on a 4 day a month schedule of low dose chemo. It has been working fine for the last few months, so "if it ain't broke, don't fix it". Often in cancer fighting the "SWAG" method is used. I think this is one of those times. The doctor is very pleased with the way Jake has responded and is very comfortable holding off progression of disease with this low dose chemo. We are not burning any bridges for future treatment, if anything we are gaining more ammo. I am sure things will change, they always do. I will update as soon as they do.

Lee

Saturday, June 7, 2008 1:06 PM CDT

We had a wonderful relaxing time on vacation. I hopefully will be able to post some pictures soon. Lee and Jake flew from Ft. Lauderdale to NYC and they arrived very late last night. Jake was not excited at all, but once he gets there he gets better. I just spoke with Lee and Jake and Rich have gone walking around a big street fair. Lee said it was extremely hot there right now.

Please be in prayer for Marissa and her entire family. We have grown very close to this little girl and her entire family. She needs your prayers right now.

Kim

Thursday, May 29, 2008 7:48 PM CDT

Well, things are going well. Jake is feeling great. We are all just getting ready for graduation day. Kala will graduate from high school this Saturday. Just like every other mom and dad in the world, we have no idea how it happened so fast. I can remember taking her to her first day of preschool just like it was yesterday. We are not going to be sad. We are going to be thankful for this day. She actually wanted to take a family vacation; so, we are all leaving Sunday and going to St. Thomas for the week. We are all so very excited (except I do not like the flying part) and grateful that we are getting to go. We will be getting back on Saturday and Lee and Jake will be leaving for NYC on the following Monday morning for more chemo. They will also be meeting with a hematologist to see how the blood clot responded to the shots.

Please pray for safe travels and thank you so much for checking in.

Kim

Friday, May 16, 2008 1:17 PM CDT

Jake feels great. He is enjoying his time off so much. The shots for the bloodclot are going fine. He has gotten use to having a shot a day. If anyone out there needs a shot I am available and I have given myself pro-status. Jake is not due back in NYC until June 9th and as of now he will doing another round of chemo.

Kala has now made a final college decision we though it was going to be Ole Miss, but she decided that was just too far from Valdosta. She has now decided to go to the University of West Georgia which is about four hours from here. She is getting very excited. Luke is doing great and will just be doing the baseball thing off and on this summer. His summer schedule is not going to be quite as busy as it has been in the past. Lee and I are hoping to get out on the ocean some and do a little flats fishing.

We are so thankful for everyday that we are given and we are so thankful for all of the prayers that have be given as well.

Thank you for continuing to remember Jake as well as the rest of our family. I will update again as things change which they always seem to do when you are in the world of cancer fighting.

Kim

Saturday, May 10, 2008 3:31 PM CDT

Jake is starting to recover. He has had a whole blood transfusion and that has perked him up. He is taking the frag shot for his blood clot everyday, but he is tolerating it well. He is hanging out with his brother and playing xbox 360 and ps3. There are not a lot of times the two of them get to hang out, so when it happens it seems to be very special. We will continue to check his blood over the next couple of weeks, but we do not have to go to NYC for treatment until June 8th. The bone marrow results finally came back and it is still there. It is not in a large amount, but it is still hanging around.

Lee

Monday, May 5, 2008 6:45 AM CDT

Jake is doing great. No issues, yet. He is playing his xbox 360 and ps3 and just hanging out. Yesterday he went swimming and has been eating well. We are starting his bloodwork check-ups today. I am not sure how this is going to go, but I am sure it will fine. I still have no bone marrow results. I hope to hear something today.

Lee

Saturday, May 3, 2008 9:04 PM CDT

Jake is home and feeling pretty good so far. We started the shots for the bloodclot on Thursdy and it is going well. Jake is not thrilled with having a shot everyday, but he doesn't complain. We have also worked out the issue with monotoring his bloodwork while he is on the medicine to breakup the clot. Our doctors in NY have finally decided that we do not have to have a hematologist. They have agreed to work with Jake's pediatrician here in Valdosta. We now do not have to worry about driving to Atlanta during the week because everything can be done here in Valdosta. Please continue to pray for the bone marrow results to be good. Because if they are the same or better Jake will be given a five week break. He is counting on that so much; so, please pray he needs the break.

Thanks for checking on us,
Kim

Wednesday, April 30, 2008 1:01 PM CDT

This was another uneventful day. That is the best kind, though. Jake is feeling fine and managing the chemo well.He is a little stressed out by the fact his hair will not grow back, but other than that he seems to be fine. Tomorrow will be the last day in NYC. We still have not started treatment on his blood clot. Apparently, he has had this problem for 5 months. The doctors want us to address it, but it can wait until we get back home. Valdosta does not have a hematologist that will see Jake, but we are trying Tifton or Moultrie. All we need is a doctor that can monitor the blood work and make adjustments to the treatment. The Pearlman Cancer Center in Valdosta refuses to see Jake or be a part of the care in any way. We will continue to work around them and make sure Jake gets whatever he needs. As a last resort, we will have to go back to Atlanta next week. Please pray that a door will open in South Georgia to make the process easier on Jake. Shands Hospital in Gainesville, Florida would be great, but they do not accept Georgia Medicaid and Jake does not have any other form of insurance. If anybody has any idea's please email or call me. We will be traveling tomorrow, but I will be trying to set up whatever we are doing on Friday.

Lee

Tuesday, April 29, 2008 2:13 PM CDT

Day two is behind us. We were able to get in and out without any problems. I do not see how the PDH at Sloan runs as smoothly as it does. They have a tremendous staff. Jake is feeling good, he has only one side effect from this chemo right now. Once the chemo begins he gets a horrible taste in his mouth. we have tried gum and candy, but he only thing that seems to work is Chinese food. We found a new Chinese restaurant today that was good. We can not wait to fly out of here on Thursday. Jake and I are counting down the days. I will update again tomorrow, thanks for checking in on us.

Lee

Monday, April 28, 2008 6:07 PM CDT

Well, today went as smoothly as a Monday (when they weren't expecting you) could go. Jake was able to start his chemo today, but we were not able to get in with a hematologist. We will hopefully get an appointment tomorrow or Wednesday. It will more than likely be Wednesday before we get bone marrow results. The medicine that they prescribed for Jake will have to be ordered so we are not going to be able to start it until they get back to Valdosta on Thursday.

Thank you so much for checking in and please keep praying.

Kim

Saturday, April 26, 2008 10:59 AM CDT

Jake has a small blood clot in a vein in his neck. This is a blood clot that is normally found in elderly adults. They are saying that this is a random thing that we will handle with a series of shots given daily to dissolve the clot. The problem we are having is he has to get in with a hematologist on Monday morning. We found all of this out on Friday afternoon about 4:30 which was making it impossible to get anything set up for Monday. Lee and Jake have decided to stay in NYC and see a hematologist there and do Jake's next round of chemo. Jake's MIBG scan was clean. We will hopefully get the results from the bone marrow early next week. The bone marrow was the place that still showed disease on his last scans. At this time our doctors in New York think we have come back to Valdosta; so, they are not going to be expecting us on Monday. Lee is going to email our nurse this weekend, but we do not know if she will see it before Monday morning. We had to make a decision last night after it became evident that we would not be able to get in with a hematologist here in Valdosta because of Jake's age. Since Atlanta is out of the loop with all of this it would be really difficult to get anything established by Monday there either and they would more than likely want to redo all of the test. That would push everything back and we would more than likely not get started until the middle of the week. At this point in time we are told that this is not life-threatening, but we were told that we do not need to delay in taking action. Therefore, we decided our best bet would be to stay in NYC since they are already completely familiar with the situation. Please pray for everything to go smoothly on Monday; so, we can get this started and over with. Please also pray for clean bone marrow results.

Thanks,
Kim

Thursday, April 24, 2008 6:46 PM CDT

NEW UPDATE Friday April 25th:
Lee and I are totally confused now. The Doctor that told us yesterday the mediport was breaking down is now saying the port is fine. He is saying that Jake has a bloodclot in the vein in his neck that is noncancer related. Jake is in bm pulls right now and then he will have an ultrasound on the clot to see the best way to eliminate it. Lee and I are extremely frustrated right now. It is totally terrifying to be told so many different stories. It makes you feel like no one knows what is going on. Lee is trying to get a meeting with our normal doctor and get as much accurate information as we can. One of us will hopefully be updating soon with some answers.
Kim




Jake had his ct scan today. It came back with some concern. Apparently, his mediport is breaking apart. He has a piece of the mediport tubing that has broken off, passed through his heart, and lodged into his jugular vein. He is doing mibg tomorrow @ 11, then bone marrow pulls, then he will have a ultrasound to look for more pieces. Today he had a echo cardiagram and there appears to be no pieces in his heart. We will meet with Dr. Kushner tomorrow and discuss removing the mediport and the piece in his jugular. I will update again after that meeting.

Lee

Wednesday, April 23, 2008 6:13 PM CDT

Jake and I are in NYC. We had a rough start this morning, Jake is having a lot of trouble dealing with the treatments right now. He has been doing this for 7 years and is starting to wear out. This is test week. Please pray for great results this week and maybe some down time to recharge his batteries. I will update as things happen, ct tomorrow, mibg and bone marrows Friday.
Lee

Thursday, April 17, 2008 6:45 PM CDT

Hello Everyone,

Jake has felt pretty good this week. His anc was pretty low on Tuesday, but we are going to check it again tomorrow. Hopefully, he will be bouncing back. He has actually had alot less stomach trouble this time than he last time. Jake is still on schedule for testing next week beginning Thursday. Lee and Jake will be taking the journey together again. Well, that is really all of the news I have for now.

Thanks for checking in,
Kim

Saturday, April 12, 2008 8:01 AM CDT

We are home. Jake had a great week in NYC. He was able to eat and stay in good spirits all the way through it. The next step is us going back in 2 weeks for scans and work ups. Dr. Kushner has moved the scans up by 30 days. He feels like we need to make sure what we are doing is working and I am fine with that. Jake will be hanging out in Valdosta the next few days and playing xbox360. I will update as things change, which they will.
Lee

Wednesday, April 9, 2008 6:16 PM CDT

We are in NYC now. Jake is doing chemo. It has been a uneventful week. He tolerates it well and is doing great. We are going to have to come back in 2 weeks for scans and work ups. Dr. Kushner has moved our 90 day testing up to 60 days. I am not sure why, but he feels it will allow him more time to set up the "next step" of treatment. I will update after we get home safely.
Lee

Sunday, March 30, 2008 7:53 PM CDT

Jake is feeling much better. Last week was a good week for him. He is eating well again and his blood work is great. We have had a very busy weekend. We left last Thursday after Luke's baseball game for a college road trip. Kala has accepted to Ole Miss University and we went to an open house weekend there. We also celebrated Lee's 40th Birthday on Friday. Kala loves Ole Miss and so did we, but it is forever away from Valdosta. We have just arrived home after being in the car for ten hours. Everyone is extremely tired, luckily the kids are on spring break this upcoming week. Thanks for continuing to check in on us. Jake is scheduled for chemo in two Monday's. We are just trying to decide on where to have it. Everything went fine in Atlanta last time, but Lee is really wanting to meet with the Doctors in New York regarding what is next. We have not had a conversation with the Doctors in New York since we found out it was still in his marrow. We have had a couple of emails, but not an actual conversation about the future.

Thanks again for checking in,
Kim

Friday, March 21, 2008 10:33 AM CDT

Jake has felt cruddy all week. He has had stomach issues all week as well. About the only thing he can manage to keep down is gatorade. He has not felt like doing anything. He has laid around all week and he is starting to get aggrevated about feeling so bad. He is trying to keep his spirits up and we have all tried really hard to bother him about eating. As a mom that is what we do - we are constantly trying to make sure our kids are eating. He is just as frustrated as I am though, because he wants to eat. Prayerfully things will start turning for him this weekend.

Happy Easter and thanks for checking in on us,
Kim

Saturday, March 15, 2008 10:36 AM CDT

Jake and Kim have made it home. Jake had an uneventful week of chemo in Atlanta this week. That is exactly what we wanted. He has had no problems and is currently playing xbox live in his room. The plan now is to do blood work ups in Valdosta this Tuesday and Friday, then go back to Atlanta the first week of April for another round. Luke and Kala are very busy with high school baseball and soccer. That will take most of our time up the next few weeks. I will update as things change, which they will. Thanks for checking in on us.

Lee

Monday, March 10, 2008 8:03 PM CDT

Jake and Lee have started chemo today in Atlanta. Lee had a nice conversation with Dr. George today about some options that the NANT Group is doing in the world of neuroblastoma. Everything went well today and Jake had a chinese feast for dinner. It is nice being in Atlanta this week because Lee and Jake are driving home tomorrow as soon as chemo is over to see Luke's first varsity baseball game. Luke is getting the great honor of starting as an 8th grader, needless to say we are all very excited (especially Lee). Jake and I will head back up on Wed. morning to finish the week.

Thanks for checking in,
Kim

Wednesday, March 5, 2008 7:41 AM CST

Dr. Kushner emailed me last night with the first part of Jake's bone marrow test. It was not good. It shows neuroblastoma activity still in his marrow. The gameplan is still the same. We are headed to Atlanta on Monday to start a low dose round of chemo. I am not sure when things will change, but I am sure they will. I am very disapointed. But, the positive side of this is the treatments that Jake has endured over the last 4 months have been effective. The bone marrow has not been treated, we have been attacking the spots in his bones and it has worked. The problem we have is the same now as it has always been. Jake has always responded well to treatments but has never been able to stay clean. Whatever is causing this cancer is still happening. I am hopefull that we can find something in the near future that will not only eliminate the problems, but will stop whatever the cause is. Lee

Saturday, March 1, 2008 0:08 AM CST

We have made it home. Jake's test turned out GREAT! I was not happy with the original look, but the end result was good. Jake continues to amaze me, he has responded better and quicker than I ever dreamed. All of the original spots and involvement are completely CLEAN. We will get the bone marrow results sometime next week, but the ct and mibg are clean. There was a odd spot on the mibg around his right kidney, but Dr. Kushner was not concerned. The new game plan is to do a low dose round of chemo starting on March 10th, then a second round the first week of April and then rescan in May. We are wanting to do the next 2 rounds in Atlanta and then return to NYC for scans. Jake however, does not want to return to Atlanta. We will have to figure out a way to ease his mind that Atlanta can do this chemo without any problems. I will update early next week after bone marrows are in. Thanks for checking on us.
Lee

Tuesday, February 26, 2008 7:52 AM CST

We leave for NYC tomorrow morning at 7:00a.m. Lee, Jake, and I are going this time. Please pray for safe travels. Please pray for good scans. All the test are big, but the MIBG scan which is an immediate result for us will be Friday morning around 8:00. This is such a stressful week and we are all very nervous as to what these tests are going to show. We need your prayers and we want to thank you because we know we are going to get them.

Love,
Kim

Friday, February 15, 2008 9:58 PM CST

Jake's counts have been amazing this week. He has had a great week just chilling out. This has been a very fast week. Kala and Luke are very busy with school, soccer, and baseball. Jake has hung around the bookstore and played video games. Kim and I never seem to slow down. We are going back to NYC on the 27th of this month. Until then we will just be chilling. I will update as things change.

Lee

Saturday, February 9, 2008 3:27 PM CST

We are home! Jake is feeling well, and he should recover very quickly. The week in NYC went very quickly and with no problems. The next step is scans. Jake and I are going back on Wednesday February 27th. We will spend the next 2 and a half weeks building him back up. I will update as things change.

Lee

Tuesday, February 5, 2008 10:51 AM CST

After a stressful day of travel, Lee and Jake arrived safely in NYC. Besides the normal craziness of Monday's in the clinic everything went fine with chemo yesterday. Jake is on an afternoon schedule; so the guys were able to get some much needed rest this morning. Jake is feeling good and prayerfully things will stay that way. He not having any radiation; so, hopefully things will remain uneventful this week.

Please be in prayer for two families back where we are from in Chickamauga. One family has a daughter just recently diagnosed with juvenile diabetes at the age of 10. This is a disease with no cure and if one is not found will be something she has to deal with for the rest of her life. The other family also has a daughter with juvenile diabetes. She is the same age as Kala and was actually diagnosed several years ago. She recently experienced a serious head injury from a fall on a class fieldtrip. She is experiencing great pain in her legs and is having to use a walker to get around. They have an appointment with a specialist, but were not able to get in until April. Please pray for relief from the pain and that the Doctors will be able to help her for the future; so, this is not something that could effect her for the rest of her life. She is already dealing with one lifetime illness. Please continue to pray for cures.

Love,
Kim

Sunday, February 3, 2008 8:11 AM CST

Everything is set for a week of chemo. Jake and I are heading back to NYC tomorrow morning at 6 a.m. from Valdosta. If everything goes well we will come home on Friday. Jake is feeling much better and the flubug seems to be gone. You don't realize how wonderful it is to be at home sometimes, but it has been really nice to have this week off. I tell Jake all the time going to NYC is like going to a job, you may not like it, but you have to do it. Jake is in good spirits and I think this week will zoom by. I will update again from NYC tomorrow.

Lee

Tuesday, January 29, 2008 7:35 AM CST

Change of plans... Jake has caught the flu bug. He has a sore throat, cough, sneezing, runny nose, and body aches. Kim and Jake are going to South Ga. Medical to draw labs, and then to his pediatrician for a check up. Dr. Kushner advised us not to come to NYC until this has run it's course. I changed our plane tickects last night to fly up on Monday February 4th. The next step will be more chemo next week and then we will wait 2 weeks and run all of his test. I will keep the site up to date as things change, which the will.

Lee

Sunday, January 27, 2008 6:45 PM CST

We had a wonderful time in Disney with all of our neuroblastoma friends. We having been doing this for the last four years, but I believe this was the largest group that we have ever had. The group consisted of 60 people. It was amazing how we were able to go from ride to ride and not lose anyone. We did go off on our own a little more this year than in the past, but it was still wonderful spending time with people who are going through the same things we are. Unfortunately today we noticed Jake was not riding and began lying around on benches when we would stop. I felt of him and he was running a temperature; so, we left the park and headed straight back to Valdosta. The fever has not been very high, but he feels cruddy. Lee and Jake are scheduled to fly to New York on Tuesday morning first thing, but we may try to get them on up there tomorrow depending on how the night goes.

Thanks for continuing to check on us,
Kim

Tuesday, January 22, 2008 12:32 AM CST

Jake is feeling good. His appetite has finally returned. We are getting ready to go to Disney on Thursday this week. That will be a welcomed change from the grind of treatment. He should feel great and have a great time. After Disney Jake and I will return to NYC next Tuesday and do a check up. After the check up he will do a round of chemo. We are trying to get that set up now. I will update from Disney later in the week. Thanks for checking in. Lee

Wednesday, January 16, 2008 8:31 AM CST

We are home. Thank you Corporate Angels and Home Depot for a great flight home last night. Jake is feeling good, he will need to do blood workups on Friday and probably gshots. We will have a couple of days of down time and we are going to Disney next week with the floks from the Ronald House. This will be our third time to go and we always have a blast. Jake and I will be returning to NYC on January 29th for complete work ups and then he will do chemo the following week. Dr. Kushner was in good spirits this week and even talked about vaccine. I am still not sure when it is coming, but I believe it is real though. Thanks for checking in on us. Lee and Jake

Tuesday, January 15, 2008 8:49 AM CST

New day, new deal. Jake received 3 units of fluid yesterday and it has helped. We are in the clinic now waiting on blood work ups. He had a good night and I think we will be on schedule for going home. He is eating and drinking for the first time since last Thursday. I will update if anything changes, but if not I will update when we get home. Lee

Monday, January 14, 2008 11:34 AM CST

What a long hard weekend. Jake has been sick all weekend. If he moves, he pukes. This morning we were 5 minuets late for radiation and missed our time slot. We had to wait 1 hour to be worked back in. then we came up to the clinic and sat in the iv room for 1 hour waiting to be accessed. The girl in the iv room finally sent us to the bed area and told us they would access us over there. Our nurse in the bed area told us we needed to back over to the iv room. In the middle of all of this Jake decided to PASS OUT! Everything went into slow motion like a car wreck. He was only out for a few seconds, but it was enough to get everyones attention. He is now accessed, has oxygen going, and is receiving the fluids he needs due to his hydration. Please pray he will be strong enough to return home tomorrow. Lee

Friday, January 11, 2008 9:36 AM CST

Day 5 is finally here. Jake is not feeling well, but that is to be expected. He is sleeping now here at the clinic. Sleeping is good, because if he is sleeping, he is not pukeing. His electrolytes are low, which is no unusuall, so we are getting extra fluids today. I will update as things change. Lee

Thursday, January 10, 2008 9:10 AM CST

The sickness has started. Jake is handleing it well though. Last night he ate, thru up, and then ate again. I am not sure how he does it, but like everthing else he just does it. He is not sleeping at night, but I am not sure that is just typical teenager. I dropped off all of the financial papers to the hospital on tuesday, now it will go under review. I hope to hear something by the end of the month. We are excited about going home next Tuesday. It is kind of weird only being here 9 days. We are coming back January 29th for all of his scans. Thanks for checking in.

Lee

Tuesday, January 8, 2008 12:23 AM CST

Day two is behind us and things are moving along great. Jake is feeling fine and continueing to eat and play. The chemo is low dose and the radiation is easy for him to do. The weather is warm in NYC today, but that is suppose to change tomorrow. We have our travel plans set up for the trip home next Tuesday. We are going to try Corporate Angels again. The trip up here was cancelled at the last minuete, but maybe the trip home will work out. As many of you know the best treatment here is one that is uneventful, and hopefully this one will be that way. Thanks for checking in on us.

Lee

Monday, January 7, 2008 7:33 AM CST

It is Monday morning and we are here. It is unusually warm in NYC. All of the buildings are like saunas. Jake is feeling well, we are in the radiation waiting area with about 30 other people. Mondays are always the hardest. We will get in the groove as the week goes on. I think we are starting chemo and radiation today. If all goes well we will be back home next week. The radiation tech just came and got Jake. There has been some confussion about how many treatments Jake is getting, apparently now we are back to 1 time a day for 7 days. After we get done here we will head up to the 9th floor for chemo. I will update as things change, which they will.

Lee

Wednesday, January 2, 2008 11:33 AM CST

Happy New Year. It is time for Jake and I to head back to NYC. We have had a great 3 weeks at home. Jake is feeling great. He has put back on most of the weight he lost. The plan as of now is to head back on Saturday. Coperate Angels are flying us back up. We will leave Valdosta Friday afternoon and head to Atlanta. Jake will start chemo and radiation Monday morning at 7:00. He will spend 7 days doing radiation and 5 days doing chemo. If all goes well we will return home for a week and then return for scans at the end of the month. I have a meeting with the hospital next week to discuss finances, please pray we can come to an agreement that will work for both of us.

Lee

Tuesday, December 25, 2007 6:38 PM CST

MERRY CHRISTMAS!!

We have had a wonderful day. As always everyone was sad to see the day wind down. All of our family who came down to share this time with us have gone home. The house is empty feeling now. Jake is feeling wonderful. He is eating again and has put back on some of the 22 pounds he lost this fall. He looks great as I hope you can tell from the new picture. I thought I would put on with his sister for a change. Jake will just be hanging out and enjoying his time at home.

Merry Christmas once again,
Kim

Thursday, December 20, 2007 12:11 AM CST

Christmas time is almost here! Jake is starting to recover. His blood work came back GREAT! He has started to eat again, but only in small amounts. Overall he is feeling stronger and much better though. Luke and Kala are through with finals and Jake and Luke are playing together now. I think this is going to be the best Christmas ever. We will close the bookstore tomorrow and then the party will begin. Jake has blood workups tomorrow and if they check out okay he will not have to think about cancer fighting for 2 whole weeks. Merry Christmas and thanks to all for the prayer and support.

Lee

Sunday, December 16, 2007 7:42 PM CST

We are HOME!! Jake is still feeling the effects of 5 days of chemo. I am hopeing tomorrow he will begin feeling better. The Corporate Angel flight was awsome. That was the first time Jake and I have ever had that oppurtunity and I hope it is not the last. We have a busy week at the bookstore this week. VSU won the National Championship on Saturday in DII football and we will be gearing up with merchandise for Christmas. Jake will get his neulasta shot tomorrow and hopefully his counts will be recovered before Christmas. Thanks for checking in on us and I will update as things change this week. Lee

Thursday, December 13, 2007 4:05 PM CST

Day four is over. Jake is receiving red blood today to tank him up for our trip home. He has had a fairly easy week. One more day and we will be home tomorrow night. We are flying with corporate angels for the first time. They are a wonderful service that uses private jets to transport cancer kids around the country.We will be flying out of white Plains, Ny. They are taking us all the way to Valdosta Regional Airport. I think this is going to be a great trip home. Jake is having some anxiety about going home. He has been here for so long he is concerned about being far away if he needs any treatment. I am sure once he gets home all of that will disappear. It is funny how he has to prepare himself for all of the stuff he does. I call him a "Firewalker" because that is what he does everyday. I new friend of ours here in NYC that has a son fighting NB also calls Jake the "Incredible" for all he does. Whatever you call him I could not be prouder of him for never quitting or giving up.

Lee

Tuesday, December 11, 2007 7:53 PM CST

Day 2 of chemo is over. Jake continues to amaze me. He experienced the normal affects of chemo today. He gets a bad taste in his mouth from this round and wants to eat Chinese food every day to get rid of it. Today as he was eating he fell asleep with his spoon in his mouth. It was very funny. When he woke up, he was fine and has been playing downstairs ever since. Tomorrow he will see the radiologist and get set up for our return in January. We have 3 more days of treatment and then it is back home for Christmas. These last 3 days can't go fast enough.

Lee

Sunday, December 9, 2007 11:59 AM CST

Jake is feeling great. We are going to a New York Ranger hockey game later today. He will start low dose chemo tomorrow and he will do radiation simulation this week. If every thing goes smooth we will get to go home next Saturday for Christmas. We are counting down the days. Jake has been here since the middle of October. It will be nice to sleep in our own beds for a while. I will update as the week goes on.

Lee

Thursday, December 6, 2007 12:30 AM CST

A lot has happened over the last couple of days. First of all, I am now in NYC. I flew up to meet with the Doctors about the test results and discuss the "plan". Jake has once again amazed Dr. Kushner. After one treatment of high dose chemo and radiation the test show the cancer has not grown anymore. As a matter of fact the chemo and radiation has KILLED a lot of it. We are now dealing with 3 "hot spots" and only 1 of the 4 bone marrow sites showed cancer. In October he had 7 spots and all 4 marrow pulls showed cancer. His platlets are climbing to 100,000 own their own. He feels great and is very happy. I am so thankful! The "plan" is to send Kim home tomorrow and Jake will start low dose chemo next Monday. Jake and I will get to go home next Saturday December 15th for 3 weeks. He will get to spend Christmas and New Years in Valdosta. He and I will return up here on January 7th and start more radiation and chemo. We are all excited to be going home.

Lee

Tuesday, December 4, 2007 10:28 AM CST

The bone marrow pulls went fine yesterday. Jake even felt like going to the big Sony Wonder Party, that is put on by a fondation here in NYC. The foundation was started by a family who had a child with sarcoma. They rent the Sony Wonder building and throw a big party. Jake is feeling very good. We are just hanging out and are waiting for our appointment tomorrow with Dr. Kushner. We will have a new plan tomorrow morning. Lee is coming today and we are swapping places. Please keep praying.

Love,
Kim

Sunday, December 2, 2007 9:40 AM CST

Sorry that I did not update again yesterday. Dr. Kushner came in yesterday around 11:00 and said we could go. Jake and I were thrilled. However, it took them until 4:15 to get us out of there.

We are going to lay really low today and watch the snow. We have about 1/2 an inch, but it is still snowing. It had stopped for awhile, but it has started back up. I watched the weather and they are saying it will turn to sleet and rain later today. This whole week is suppose to be really cold and there is a chance of snow Tues, Wed, and Thurs. of this week.

Thank you all for your kind words and prayers. We have the one test left tomorrow and then we should get our next step. Please pray as the doctors begin making their decision on what is next.

Love,
Kim

Saturday, December 1, 2007 9:01 AM CST

Well, yesterday we had an anc of 100. Today we had an anc of 300. However, the magic number is 500 so I quess we are stuck here another night. Both of us are trying very hard to not be depressed, but it is pretty hard after two weeks of being inpatient. Prayfully this is the last night. I have been telling Jake that now for two days so he is having a hard time believing me. Jake's ct scans came back all clear. We have bonemarrow pulls left on Monday and that is the last test.

I will update if anything changes,
Kim

Thursday, November 29, 2007 5:12 PM CST

The spot on top of Jake's head is gone. Dr. Kushner was thrilled with that and overall the rest of the scan was much improved. We are looking at radiating a small spot around Jake's right eye which was there last time as well. He said we will probably do this with low dose chemo as well. Now we are going to wait on the bone marrow results because that can change the gameplan in a heartbeat. Dr. Kushner was extremely pleased with the results of the scan today. I am breathing again because the thought of putting him through all of this for no change or a worse result was unbearable. Dr. Kushner also said he saw things in Jake's blood today that is indicating some patential white cells. Jake is eating and has felt well today. He is complaining of boredom. Praise Jesus!!! As all of you moms and dads out there know that is a wonderful sign. We do not have a timeframe yet for the next treatment his body still has recovery to do. I am so wishing for the Monday after Christmas, but I do not know if they will let us wait that long. We definetly do not want to do anything to mess with the progress we have made. Thank you for praying and please keep them coming we still have along way to go.

Love and thanks,
Kim

Wednesday, November 28, 2007 3:54 PM CST

THE SCAN IS TOMORROW MORNING AT 8:00 A.M.




Jake has had a good day so far. He ate breakfast and was able to keep it down. His white cells came up a tiny, tiny bit, but anc is still at zero. Jake did a breathing treatment today to help prevent pneumonia. The big scan that was scheduled for Friday has been moved we wil be having it tomorrow. I do not have the time yet, but please pray that all that Jake has been through over the last several weeks has been worth it. Thank you all for your prayers.

Kim

Tuesday, November 27, 2007 7:14 PM CST

Well, still no white cells. We did however have an interesting afternoon. Jake had a nosebleed that began at 2:00 and lasted until 4:20. He crushed his old nosebleed record of 55 minutes. (not a record you want to break) His nose bled straight through the first bag of platelets and finally stopped just before the second. They did have to put us on a third antibiotic today. They have also started Jake on a bloodclotting medication. I can honestly say this is the most medicines Jake has had in the entire six years we have been doing this. We also got evicted from our private room and are sharing. The little boy is quite a bit younger than Jake, but he is pleasant and content watching television. Jake does seem to be feeling better tonight than he has the last couple of days. The tech just came in and he is not running a fever at this time. YEAH!!!!!! Please pray for no more fever and white cells.

Love and prayers,
Kim

Monday, November 26, 2007 5:52 PM CST

Radiation is over. We are praying that things will turn around now that radiation is over. Jake has had a little bit of fever the last night. If he has anymore fever he will have to be put on a third antibiotic. Today the added a pill to add folic acid to his system and a pill to increase his appetite. He has to take ten of the pills to increase his appetite. He can take them all at once or spread it out over a couple of hours. His platelets were low today, but knock on lots of wood he has not had a nosebleed. His hemaglobin was still pretty good, but that may change tomorrow since he had radiation today. I am praying that after a couple of days with no radiation his counts will have a chance to come back. Please keep praying. I usually do not share things that Jake says that are heart-breaking, but I thought I should share this. Yesterday, Jake and I were watching a Christmas movie and they were making Christmas wishes. Jake looked at me and said I know what my Christmas wish would be, "To get out of this place and never deal with this again."

Check out bandorparents.org and check out the fundraisers that are going. These fundraisers are going to the development that could make Jake's wish come true.

Love and keep praying,
Kim

Sunday, November 25, 2007 1:57 PM CST

Labs are back and we still do not have white cells. Jake felt very good yesterday until he tried to eat and then it was down hill from there. The nurse came in to do labs around 3:00 a.m. and could not get Jake's line to flush. They tried everything, but finally we had to take the needle out and put another one in. Jake was very brave. That is very painful to have the needle stuck in your chest with no numbing creme. He did great and that worked like a charm because his line worked beautifully after that. During that same time frame Jake developed a thirty minute nosebleed; so, we had to have a platelet transfusion. His platelets were actually not all that low, but Dr. Kushner said because of his nosebleeds we would transfuse anything under 50,000. Thanks for checking in and I will update as things change and they always do.

Love,
Kim

Saturday, November 24, 2007 11:04 AM CST

Still no white cells. Jake is feeling good so far today, we have gone for a walk and to the playroom. We are going to get ten laps in today. Lee, Kala, and Luke have made it to Atlanta and are going to spend the night in Peachtree City with his brother. Lee's mom has also come down and they are going to watch the Tennessee football game together.
Jake and I are just hanging out waiting on white cells. Jake has one more day of radiation on Monday. Hopefully after radiation is complete the white cells will have a better chance of returning. However, that keeps us in the hospital even longer. (yuck) It would not hurt our feelings at all if they decide to return before that though.

Keep praying,
Kim

Thursday, November 22, 2007 9:53 PM CST

Jake is still in the hospital. MSKCC has a policy of not releaseing you until your blood counts come back up. Jake was admitted on Monday night for fever, the fever was gone within 2 hours, but his white blood cells are not rebounding. I am gratefull that we are here though. Today Jake has had 2 major nose bleeds and received platelet transfussions after each one. He is starting to feel better, he even ask me for something to eat tonight. Unfortunatly before Kim could bring him food the 2nd nose bleed started and he had to have premeds which put him back to sleep. He will probably will wake up around 2 a.m. and I will see if he still wants to eat. Dr. Kushner talked with us this morning and he wants to test Jake next Friday, Saturday, and Monday. After the last test the team will meet on Tuesday December the 5th and come up with the next step in our gameplan. I think he is leaning toward doing 1 more round of high dose chemo. If that is the case that will mean we will spend Christmas in the hospital in NYC. Kim is not happy. Please continue to pray that Jake's white cells will recover quickly and the Team will come up with a gameplan that will be effective and also Jake, Kim , and I will find the strength to get through it.

Lee

Tuesday, November 20, 2007 4:49 PM CST

This is my third try to update. I am having connectivity issues here in the hospital. Jake still feels yucky. He has zero appetite. This is going on about day ten without eating enough to feed a bird. He is pretty much sleeping all the time. He looks so thin. He has lost ten pounds since we got here.

Jake received two units of whole blood today. Dr. Kushner told Lee that we would not be released until he is not neutrapenic anymore. Please pray, pray, pray for white cells to start pumping again. It is terrible being inpatient here in NYC. We are having to share a room with another patient who is much younger than Jake. He is also starting chemo tonight; so, he is going to be up all night going to the bathroom. It stinks for both families having to share. Each family tries very hard not to disturb the other family, but it is pretty much impossible.

Please pray for white cells,
Kim

Tuesday, November 20, 2007 1:04 AM CST

Well, it has happened. Jake has developed FEVER. The good news first. Today Jake came to the clinic and Nurse Linda deceided to change his meds and put him on fluids. This helped tremendously. His new nasseua med has stopped his throwing up completly (so far). The irrontecan side efffects have finally stopped also. The bad news- Jake is now in-patient at MSKCC for the first time. Around 9:00 p.m. on Monday night he had a fever of 101. Kim and I brought him to urgent care and it has been a experiance to say the least. The first thing they did was give him a massive amount of fluids to get his kidneys working overtime. Then they put 2 different types of antibiotics in him to fight the fever. At 2:00 a.m. he was moved to a room on the 9th floor. The staff is kind, but very young and inexperianced. We deal with the brightest and most experianced minds in Neuroblastoma everyday in the clinic, so it is very concerning when you deal with something else. In a few hours the staff from the clinic will be in and they will get involved quickly. He is resting well and I will feel much better when Dr. Kushner arrives. I will update again soon.
Lee

Sunday, November 18, 2007 9:00 AM CST

Kala and Luke arrived with no problems. I am very proud of them they did everything on their own. It makes a mom feel good that they can handle themselves.

Jake is still feeling really bad. He is still having stomach issues and he has not eaten enough to feed a bird in eight days. To all of our prayer warriors please pray for his counts to bounce back immediately so he can start feeling better. He has felt bad long enough.

Pray, pray, pray,
Kim

Friday, November 16, 2007 6:23 PM CST

The Doctor decided to go ahead and give Jake platelets even though he was not quite at transfusable level. They did this to get Jake through the weekend; so, he hopefully would not have to go to urgent care. We were half way through the bag of platelets when Jake looked at me and said he was itching. I looked at his neck and saw welps everywhere. I got the attention of a nurse she immediately disconnected the platelets and called the neuroblastoma teamed. They gave Jake a push of benadryl and the itching stopped pretty quickly. They got us to a room so they could examine Jake and he was head to toe hives. They were very calm about all of this because it is something that does happen. However, in our six years it has never happened to us. Lee and I were both amazed at all they do when a reaction occurs. They take blood and urine cultures from Jake. They also send the remainder platelets back to the blood bank along with Jake's cultures so they can try to figure out what might have caused the reaction. They also told us that just because he has had one reaction does not mean it will happen again. It also does not mean that it won't. We stayed an extra hour at the clinic before they sent us home. We got a wheelchair because Jake was pretty out of it from the benedryl. I had to give Jake another pill that battle allergic reactions when we got back to the Ronald; so, he is sleeping it all off now. The itching has completely stopped, but the hives have not completely gone away yet. They said it could take awhile. Please pray hard over the next several days for no fever his anc is at zero. Jake has no way to fight off any infections at this time. He will be completely confined to the room all weekend. Luke and Kala are due here tomorrow around 4:00 and this room is going to get very small. It will be wonderful to have everyone together though.

Thanks for checking in,
Kim

Thursday, November 15, 2007 9:12 PM CST

Day 4 of radiation is over. Jake has no white blood cells now. This is common, now we sit and wait on his counts to "bounce".He is doing gcf shots daily until his counts recover. He has 6 more days of radiation and then we are going to scan him again. After the scans and his blood recovers, he will get to return to Valdosta. This should be in 2 more weeks. The future past that is very unclear. The scans will determine the next step. Luke and Kala are flying up here on Saturday. Hopefully that will lift Jake's spirits.

Lee

Wednesday, November 14, 2007 3:49 PM CST

Day 3 of radiation is done. Jake is feeling rundown, that is common after chemo. His blood counts are dropping quickly. He started gshots yesterday and will stay on them until he rebounds. The hospital is working with us on all of Jake's needs. Unfortunatly, Georgia Medicaid is not. Jake will lay low over the next few days and continue radiation. I will update tomorrow.


lee

Tuesday, November 13, 2007 4:53 PM CST

Jake's anc has dropped below 1000 already so he is in danger of infection. We started the G shots today which help boost his white count, but they believe it will be sometime next week before they bounce back. The rest of his counts were still okay; so, he did not need any blood products today. Please begin praying for no infections so we do not end up inpatient. Please also pray for our friend Sydney she is doing a 3F8 treatment that has never been done before. Basically she gets a whole two weeks treatment in one day and she is actually doing this for ten days. The pain is absolutely horrific. Please also pray for her mom and dad because this is terrible on them as well. Her site is www.caringbridge/fl/sydneysims if you would like to let them know you are praying for them as well. Thanks you for all you do for us and please pray for no fevers.

Talk to everyone soon,
Kim

It is so nice being up here with help, Lee and I have not been able to be together up here very often. It makes things so much easier when there are two of you. A big thank you to my mom and dad because we could not do this without their help. Please also keep them in your prayers as they keep everything going in Valdosta

Monday, November 12, 2007 8:50 PM CST

We spent the entire day at the clinic. Jake's counts were actually pretty good, but he got sick when we got to the clinic. The doctor decided to be safe we needed to bring backpack buddy home with us; so, Jake is on fluids again tonight. We will go back to the clinic tomorrow to check his kidney levels again. Jake has felt a little better tonight since he has been on fluids. The first day of radiation was long, but it went fine. He has nine days to go.
A real good friend of ours that works here at the Ronald took Lee to a BB King concert tonight. We have made some wonderful friends here that go above and beyond to make our stay here just as wonderful as possible.

So thank you to all who volunteer their time to make someone else's life just a little bit better.

Kim

Sunday, November 11, 2007 12:46 AM CST

I am here in NYC with Lee and Jake. I arrived yesterday late afternoon. We decided that with all of the weird things going on with Jake's kidney's I should come. Jake levels did balance out yesterday morning. Thank you all for all of your prayers. Now we will be waiting and watching his counts which will also be affected by the radiation for the next two weeks. We are now praying for no fevers so he does not have to be admitted into the hospital. Luke and Kala will be flying up on Saturday by themselves. Please also pray for their safe travel and that Kala doesn't lose her brother (on purpose).

Thanks for checking in,
Kim

Friday, November 9, 2007 12:31 AM CST

I do not have many details, but Lee just called and Jake is having problems with his kidney function. One of the Doctors just informed Lee that they are sending Jake to the Ronald with the backpack of fluids for overnight. Jake is suppose to go to urgent care on Saturday morning to have his levels checked and if they are still going up, Jake will be admitted into the hospital.
Please pray for Jake's levels to come down. Lee has just called me back and Jake's dehydration is what is causing the problem with his kidneys. Jake did not throw up at all last night, but has thrown up alot today. He is borderline being admitted right now. There is alot of discussion going on right now as to what to do. Please pray for all of the levels to become stable.

Kim

Wednesday, November 7, 2007 7:40 PM CST

Day 3 is behind us. Today was long. It is so strange here in NYC. It starts getting dark around 4:30, by 7:00 you feel like you should be in bed. Jake had some problems today with chemo sickness, so he got lots of medication. The problem with lots of medication is it knocks him out. He looks spaced out, but it slows the vomiting down. We are back at the Ronald house and he is sleeping comfortably. We met with the radiation Doctor today and she is going to start on Monday. He will get 10 treatments. They are going to radiate his skull and femur. The other 3 spots we hope the chemo will take care of. Jake still has the fluid backpack tonight. It has been no problem the last 2 and this should be the last night. I will update tomorrow.

Lee

Tuesday, November 6, 2007 4:09 PM CST

Day 2 is behind us. Jake has done very, very well. Carboplatnium is one of the nastiest chemo drugs, but also causes the most damage on the cancer. He has had 2 days of it and got up and walked out of the hospital with no problems. He is wearing a hydrahtion back pack so that he does not dehydrate during the night, but other than that you can not tell anything is wrong. We have a meeting in the morning at 9:30 with the radiation Doctor to discuss elimination of the "spots". They may do all 5 at once, or they may do them in a group of 3 and 2. I bet they will spilt up the spots, but we will see. The rest of the week will be timadore and irronatican only. Jake is done with the carbo chemo. Dr. Kushner was very upbeat today. He usually is not, but today he was in good spirits. He keeps reassuring us that he has a plan that will work. I will update tomorrow after we meet with the Doctors.

Lee

Monday, November 5, 2007 2:38 PM CST

Jake has finished day one of chemo and he is sick. They put him on a new nausea drug that is suppose to last 72 hours and they said they have had amazing results. I am not sure how effective it is going to be for Jake. This is the first time that we have done chemo is this way. This is considered high dose, but in New York he does not stay in the hospital. Jake and Lee will leave the clinic at 4:00 today and go back to the Ronald House with a backpack of fluids. He has not been sick all day it just began at about 3:00 today; so, hopefully it will not last long. We will have to wait and see, Lee and I are both a little nervous because if it continues they will be on their own at the Ronald.

Also, please keep this in mind the Band of Parents which is a group that Lee and I belong to who are raising money for the development of a new treatment at Sloan are beginning their new fundraiser very soon. We will be taking orders for Christmas Cookies. Please check out the our website www.bandofparents.org for more info. Also, we are developing a website for the cookies and I will post it as soon as it is available.

Thanks for checking in,
Kim

Friday, November 2, 2007 12:01 AM CDT

We have a plan. Jake will start a regimen of three chemo drugs on Monday, one of which is a pill. We will also meet with the radiologist about the four spots and she will decide how many to radiate. After Jake's body recovers from the chemo and radiation he will then have one more round of two different chemo drugs. We will then come home for Christmas. We will go back after the holidays where Jake will more than likely go on antibodies again. Jake's blood counts are excellent right now which is good news when you are about to begin chemo. Jake's platelets are at 360,000 which is amazing.
Lee seemed in very good spirits after the meeting with Dr. Kushner. Dr. Kushner said Jake was the poster child for chronic neuroblastoma (not quite the accomplishment we were going for). It always makes us feel good after meeting with Kushner when he can be positive because unfortunately they cannot always be positive.
Lee and I are getting the calenders out to start figuring all of this out. Dr. Kushner said to be prepared to stay for five weeks which will carry us through Thanksgiving. I am starting the plane ticket search; so, we can all be there for Thanksgiving and Lee is getting a bigger room at the Ronald House.

Thank you so much for your prayers and keep them coming,
Kim

Thursday, November 1, 2007 7:57 AM CDT

Lee just called me with what he was able to see on the MIBG. He was able to pick up four spots. He saw one spot in the skull, right shoulder, right femur, and right shin.
If this does not convince GA Medicaid that we need to be in NYC nothing will. This same test was done three weeks ago in Atlanta and they said it was clean. Lee even pointed out a shadow he saw in the right arm and they said it was nothing. We still will not have any plans until tomorrow, I may go insane before then. Lee and I both can be so impatient, but we just so desperately want to get him fixed.
Please continue to pray this is the most disease Jake has had in a longtime. He does usually have three to four spots when it comes back, but this is the first time they have been able to find it in his marrow. Lee and I do feel like Jake will be having some radiation because that has been standard in the past when he has had spots. I do not know if Lee told everyone last night the ct scan was clean. That is good news because brain tumors are always a concern of Kushner. The ct scan was of the brain, chest, and abdomen which were all clear of tumor involvement. That is praise!
I have not posted Jake's address yet at the Ronald because we wanted to wait and see how long we were going to be there first. They are also in a small room and he was told if it looked like the stay was going to be extended they could be moved to a larger room. This will help if we are all able to be there together at any point. There are several major holidays fast approaching and as a mom I cannot help but think about that. Sometimes I throw the one day at a time right out of the window because my mind is already trying to figure out how in the world to do Christmas there. So, please pray that I will stay focused on our one day at a time theme and try not to get so upset over things that are out of my control.

Please pray for the Doctors as they formulate Jake's gameplan and please give us the strenghth to execute it.

Love,
Kim

Wednesday, October 31, 2007 2:57 PM CDT

Day two of testing is over, 1 more day to go. Jake is feeling good, and is enjoying the Ronald House stuff. Today is Halloween and there are a lot of parties going on in NYC. We have also been invited to a private party tonight at a resturant close by, called Cafe Luka. It should be a lot of fun. Tomorrow morning Jake has mibg scan at 8:00 and then bone marrow pulls. We will be very nervous about the results of those two test. But, what ever they are I am sure the "gameplan" will be great.

Lee

Tuesday, October 30, 2007 2:49 PM CDT

Jake is feeling better. I am feeling much better. All we have done is blood work, but it feels good to be back here. We have our schedule now. Tomorrow is ct scan, and mibg injection. Thursday is mibg scan, bone marrow pulls. Friday we will meet with Dr Kushner and discuss the test results, and set up a"gameplan". It is hard to say what the gameplan will be until all the test are performed. I will update as things change.

Lee

Monday, October 29, 2007 8:45 PM CDT

Jake and Lee have arrived in NYC. Jake developed a severe pain in his arm when they hit about 30,000 feet. I have no idea why the high altitude would effect his arm or if it had anything to do with it at all. The pain was so bad Lee had to give him an ativan. Lee called me from the taxi and said that he started with four bags and now he has five. Jake is totally out of it. Jake has not had an ativan in over a year and it totally wiped him out.

Our Nurse from New York called and Lee is meeting with the Dr. Kushner tomorrow at 12:00. Jake will be having a ct scan, mibg scan, and bone marrow pulls this week. Lee will then have another meeting with Kushner on Friday for a plan of attack.

Please pray for Jake's mental state as well as his physical state. He loves New York, but he was not very excited about being there (understandably so). Jake has been so upset this week about having to go we have not had the heart to tell him how long he could possibly be there. Once again we are just trying to take things one day at a time.

Please pray,
Kim

Monday, October 29, 2007 9:14 AM CDT

Lee and Jake are headed for NY today at 4:00 and will be there for as long as needed.

Thank you for your prayers and please know they are helping. Sloan Kettering is going to work with us while we get the insurance sitution handled. Lee and I cannot tell you what a relief it was when Lee had the conversation with the financial guy from Sloan. He was very comforting.

I will post the address to the Ronald House and what room Jake is in tomorrow. We are turning all care over to them; so, we have no idea how long Jake is going to be there. Right now we are just taking one day at a time and handling what we need to for that day. Right now it is all about prayer and thank you for those prayers. We love you and we will update as much as possible. Please also pray for the three of us who are left in Valdosta to try to carry on as normal a life as possible. I (mom) am going to go crazy wanting to be in NY with Jake during this time, but for now it is best that I stay and keep our business going. That still does not make the choice we had to make any easier, just like it is very hard on Lee in leaving Luke and Kala. Hopefully, we will figure out some way to be able to spend time together. There I go getting ahead of myself, one day at a time.

Keep praying,
Kim

Thursday, October 25, 2007 1:28 PM CDT

Friday Afternoon Update:
GA Medicaid has denied us based on the fact that it is experimental. They will not pay for Jake to go to NYC.





Friday Update:
Well, what we are battling now is GA Medicaid has a policy not to pay for any experimental treatments in state or out of state. Our State Representative, Amy Carter, from Valdosta has also gotten involved now and she is physically in Atlanta today and has been calling Lee. We are suppose to have a decision today. She had told Lee earlier in the week that if we did not have an answer she would be in Atlanta on Friday and would do everything she could. She is working very hard today for us. Everyone please pray!!!!




Kim and Jake met with Dr. Rapkin this morning. He was not sure why we were meeting with him or what he could do. He ran some blood work and sent them back to Valdosta. I am in Panama City and was not able to be with them. After I found out everything was still undecided I contacted Kim and ask her to return to the hospital. I have been emailing and phone calling everyone I know in the State Of Georgia to help speed up this process of "pre approval" to get Jake back to NYC and Dr. Kushner asap. A State Senator named Jeff Mullis has been a valubale assest to help this process. Georgia Medicaid has indecated to me they are willing to speed this process up, if CHOA is deeming it necessary. After Kim and Jake returned, Dr. Rapkin understands better how necessary it is to get back to NYC. It is my understanding that the "necessary fax" from CHOA, has been sent to Ga Medicaid and they are reviewing now. Hopefully we will get the final word today and we will be flying up to NYC on Monday.

Lee

Monday, October 22, 2007 12:02 AM CDT

New Update Oct. 2
Jake and I are driving to Atlanta tomorrow evening for an appointment with Dr. Rapkin a neuroblastoma doctor in Atlanta on Thursday morning. He just wants to do some blood work and have a question answer session with us to discuss what New York recommends and what other options we have. Please pray for our immediate wisdom in this decision.





My hands are shaking so bad that I can hardly type this note. Jake's Doctor called from Atlanta the cancer is back in Jake's bone marrow. That explains the pain he has been having in his arm over the last month. This news has absolutely blind-sided us after we got a clean MIBG we breathed a sigh of relief. Jake has not had bone marrow involvement in about three years. Our Doctor in Atlanta has also told us he is turning us over to another Doctor in the group. We have emails out to our Doctor in New York, but to be able to go there we have to get permission from the insurance company so please pray for that we desperatly want to get Jake to NY. Atlanta is great, but they do not have as much research going on as NY. Our family needs your prayers, right now just to help us breathe.

Please pray,
Kim

Thursday, October 4, 2007 9:53 AM CDT

OCTOBER 15TH
HAPPY 14TH BIRTHDAY JAKE AND LUKE!!!!!!




Update Friday Oct 5th:
Out Doctor in Atlanta wants to wait to make a decision until he comes back from a conference on childhood cancer he is attending in Denver week after next. He thinks one of our Doctors from NYC will be there and they will be able to talk face to face at that time. This is of course pending good results from the bone marrow pull.
Tonight is Homecoming at Kala's school and she in on the homecoming court and up for homecoming queen. I will try to post some pictures from the nights events. Thanks again for checking in.






THE MIBG IS CLEAN!!!!!!!!!!!!!!!
Jake had bone marrow pulls this morning so we will not have any word on that for a couple of days. All indications are good though for that as well.

Please pray for the Doctors and us as we prepare to make the decision for what is next. We are getting different opinions from NY and Atlanta; so, this makes for a hard decision.

Thank you for your prayers and please keep them coming,

Kim

Tuesday, October 2, 2007 8:49 AM CDT

Jake and Lee are on there way to Atlanta. Jake was very upset this morning because he wanted me to take him, but if it had been me he would have wanted Lee. The real truth is he just does not want to go period. He is tired of this battle, but somehow he digs down deep and finds the strength and goes. Today is MIBG injection and that is all he has today. The all important scan will be tomorrow at 3:00. Please lift Jake up in your prayers at that time. He will also have bone marrow pulls Thursday morning around 9:00 and that will be all for this round of scans. Nerves are high around the Miller house right now. It is very difficult as a parent or anyone for that matter when you have this feeling of no control. You would think after five years of battling cancer we would realize that we are not in control.

I want to say another thank you to the dads and families of those dads for all they did during the loneliest road ride. The ride concluded Saturday in Washington D.C. with one of our Doctors from Sloane riding the last ten miles with the dads. This such an amazing story of hope and perserverance. The campaign is not over funds are still needed. You need to go to loneliestroad.org and check out the blogs from the ride and check out there amazing story. The blog is located on the right just above the loneliest road bracelet.

Thank you so much to our friends and family and pray, pray, pray for clean scans.

Love,
Kim

Friday, September 21, 2007 1:11 PM CDT

Scan dates have been scheduled for October 2nd. I cannot begin to explain all of the emotions you have during this time. The anxiety level definetly goes up. Jake has been complaining of his arm aching; so, any aches like that are very scary. We are hoping he strained his muscle throwing football with Luke because it began hurting after an evening of football. The pain however has gotten worse at the week as gone on, today thankfully it is better.

We have found a wonderful teacher for Jake. He is a lymphoma cancer survivor and is a Professor at Valdosta State University; so, Jake is going to him for tudoring sections. Jake is going to stay in the homeschool situation for now and Dr. O as we call him will also design a curriculum for us to follow with Jake. Dr. O was diagnosed at the age of 15 and he is now 24. He has an amazing story to tell. His parents were told at the age of 17 that their son was mentally retarded and would never be able to learn. Doctors are amazing, but they are still human and do not know everything.

I want to thank everyone for praying for Jake's school situation. We are so thankful for the direction Christ has taken Jake this week with his education. Even after one section Dr. O has already been a blessing in Jake's life.

Thank you and please start your prayers for scan week.

Love,
Kim

Tuesday, September 11, 2007 11:09 AM CDT

Somedays I have to keep telling myself over and over that Jake is actually a lucky child. He has been dealt an unbelievable hand in life and somedays I wonder how he keeps smiling. I do not think I would be as gracious as he is. The school we were trying to get him in (Kala's) has informed us that they cannot accomodate Jake. For those of you who do not Jake is extremely delayed in academics this has little to do with cancer. Jake was born perfectly normal and at 20 months he caught a virus that attacked his brain. He lost every motor function he had developed, walking, talking, sitting up, and basically any eye to hand coordination he had. This is actually a fairly common response to a virus, but Jake had an acute case which lasted for four years and unfortunately the part of his brain that learns academically did not recover. The school that Kala goes to is only college prep they do not have any special education so therefor they felt like they could not help Jake at all. We are all including Jake very disappointed that is the first school in over a year that he was actually excited about going to. So, Lee and I are back to square one trying to find an alternative for Jake. Lee met with a Sylvan Learning Center today and they do offer a classroom setting and will accomodate whatever level your child is on, but it is extemely expensive. We are going to meet with the public school system again and see what options they have available. Please keep this matter in your prayers Jake is actually to a point where he wants to go to school and we do not want to miss this opportunity with him. We do not have a date for scans yet, which is a hugh prayer request the month of September has not been kind to Jake in the past.

Now, for Luke we should know something this afternoon whether he will be attending the school Kala is at. He has agreed to give it a try for the remainder of his 8th grade year and after that time if he does not like he will switch back to the public high school at the beginning of his 9th grade year.

Thank you for checking in and please keep us in your prayers,
Kim

Wednesday, September 5, 2007 9:26 AM CDT

Well, Luke cannot make up his mind I believe now he has chosen to stay at the school he is at. Whatever, he decides will be fine they are both good schools and he will do fine at either place. Jake exacts words about school yesterday was, "it was okay". That is actually a pretty high form of praise in Jake's opinion of school.

I will keep everyone informed in the drama that is our life.

Seriously though thank you for caring enough about our family to continue to check in. We cannot begin to thank you enough that is what keeps us going is knowing that we have so many people all over praying for us.

Kim

Tuesday, September 4, 2007 3:53 PM CDT

Jake had a good time at school. He sais that he liked all of his teachers except one. He has six teachers so I guess that is pretty good odds. Luke has decided that he wants to go there as well; so, he also shadowed there today. Hopefully, we will have everything worked out so they can begin by Thursday of this week. They have already fitted Luke for his football helmet and pads today.

Jake is feeling great. We will be scheduling his September scans in the next week or so.

Thanks for checking in and please sign the guestbook we love hearing from you,
Kim

Thursday, August 30, 2007 1:11 PM CDT

Well, we finally got word from Kala's school and Jake is going to go for a day of shadowing on Tuesday. Please be thinking of him on that day because I know he is going to be very nervous.
Back to the cancer - Jake is feeling good this week and his blood counts are holding up so far. He went for labs this morning, but we have not gotten any results yet. He and Lee are headed home now to work around the house.
We have several family members coming down for the weekend and we cannot wait.
I wanted to wish my mom a Happy Birthday!!!!
Kala's senior year of Friday Night Football cheerleading begins tomorrow.

Everyone have a wonderful Holiday Weekend and once again please be thinking of Jake Tuesday morning.

Kim

Friday, August 24, 2007 7:26 PM CDT

Jake did fine this week with chemo. We are back in Valdosta getting ready for a low-key weekend. Things are slowing down at the bookstore, but it will take me two weeks to catch up all of the paperwork I have to lay aside during rush. I do not have any news on Jake's school situation. We will be doing the usual blood checks this week with GCSF shots when needed to boost those white cells.

Thank you for checking in,
Kim

Monday, August 20, 2007 11:54 AM CDT

Jake and Lee are in Atlanta and they are getting everything hooked up for Jake to get started. We have a praise Jake grew an entire inch in 30 days we are always very excited when he hits a growth spurt just like any normal everyday kid. We just love normality around our house. We are thankful for a normal growth spurt because with all of the chemo and radiation Jake has had you just never know.
We still do not have an answer about Jake's school situation; so, please continue to keep that in your prayers.
Jake will be having scans again in September so please begin to pray now.

Please let us hear from you we love checking the guestbook.

Love,
Kim

Thursday, August 16, 2007 7:55 PM CDT

Jake had his school interview, but we have not heard anything yet. It just really depends on whether they can accomodate his special learning needs. This is a private school not public so they do not have an actual special education program. I am not sure they will have the resources or staff to accomodate us; so, please continue to keep this matter in your prayers. Please pray for guidance as we look for the school answer for Jake. Jake and Lee will begin the next week in Atlanta doing another round of chemo. I am going up on Wednesday to tag with Lee. Lee and I are both pretty much exhausted classes began on Monday for VSU so the last couple of weeks have been crazy, good crazy, but still crazy none the less.

Please also spread the word about the loneliestroad.org and remember those dads who are taking on such a challenge to not only benefit their children, but all neuroblastoma kids. The money that is being raised will go to the neuroblastoma research program at Memorial Sloan Kettering.

Thank you all so much,
Kim

Monday, August 6, 2007 7:51 PM CDT

We spent the weekend in Chickamauga with family and friends celebrating with Lee's mom we had a surprise birthday party for her. We had alot of fun it was very nice visiting with friends.

Luke begins his 8th grade year tomorrow and I have to be on a schedule again. Kala begins on the 15th and we are meeting with Kala's school this week about Jake attending school there. Please be in prayer for this, Jake has a very hard time with school and we are hoping that this is a solution that will work for him.

Also, please check out the website www.loneliestroad.org this is a fundraiser for neuroblastoma research at MSKCC.

Thank you for checking in and please let us here from you,
Kim

Tuesday, July 31, 2007 6:03 AM CDT

Jake is doing great. His blood counts held up great. We are all getting everything ready to start school again. The hardest thing we have to do is get back on schedule (which we were never good at in the first place). Luke's ball has finished up, but Kala's high school football season is gearing up. Kala is a senior this year; so, there is alot to do.

Well, I will update again soon we are trying to nail down a start date for Jake's next round of chemo.

Kim

Thursday, July 19, 2007 8:46 AM CDT

We are having a good week here in Atlanta. Kala and my sister-in-law Jane have been going to the clinic with us and they have really helped pass the time. It has actually been fun. Jake has not had any side-effects from the chemo he is eating fine and we have been playing tennis at night. Thanks for checking in and I will update again as we start doing our blood counts.

Kim

Saturday, July 14, 2007 9:57 PM CDT

We had a great time at the beach. It was just too short. Kala took some great pictures that hopefully I will get posted soon. Kala, Jake, and I will leave for Atlanta either tomorrow or Monday for chemo which starts on Monday. Lee and Luke have made it to Michigan and the opening ceremonies are tomorrow and they will start playing their games on Monday.
There is a lot going on with the neuroblastoma families right now. Many of the parents are organizing many fundraisers to help in the all important research that will prayfully find a cure for this disease very soon. Please pray for the families as they undertake such an important goal for all of the children who battle this disease. Also, continue to pray for the Doctors as they continue their research. The goal right now is to get the funding to develop humanized antibodies which is a huge discovery and one step so much closer to a cure.

Thanks,
Kim

Monday, July 2, 2007 12:16 AM CDT

We have decided to do Jake's week of chemo the same week that Lee and Luke are in Michigan for the world series.(the week of July 16th) We decided to do this to give us all two weeks to hang out together. We are going to the beach a couple of days, we are going to take the boat to the ocean and fish. This seemed a little more logical than doing it the week before which would have made Lee be gone away from the house for two weeks. Jake and Luke would have also been apart for two weeks as well. They actually get along pretty well most days and they are each others swimming buddy. Since Jake and I are not going to the World Series this scenario just makes more sense. Lee is video taping the games and some of the other events that go along with the world series for me. (Andi if you are reading this keep him on track with the videotaping please!!)

Thank you all for checking in,
Kim

Tuesday, June 26, 2007 1:45 PM CDT

All is well at the Miller's. The boys have went to our local amusement and waterpark a couple of times this past week. We are spending as much time in water as possible it is extremely hot right now in Valdosta, just like it is suppose to be. Jake feels good and is having a great summer. He will be headed to Atlanta the week of July 9th for chemo. Lee will take him and Luke and I will come up on that Friday because Lee and Luke will be flying to Michigan for Luke's World Series in baseball. (I am still a little bitter that I can't go, but sometimes you have to take one for the team.) Thank you for checking in and do not forget to sign the guestbook we love hearing from everyone.

Kim

Tuesday, June 19, 2007 10:57 AM CDT

New Update:
Wednesday - Lee spoke with Dr. Kushner and once again the saying if it is not broke do not fix it - applies once again. He wants Jake to continue on the path he is on; so, that means more chemo. We are going to be allowed to spread it out a little further between treatments. We are a little disappointed we so want to be through with treatments, but unfortunately Jake's history does not really allow us to do nothing. We knew that, but I guess we were really hoping for something besides chemo. However, this chemo is not painful (like antibodies would be), does not make him sick, and usually does not make his counts drop to a dangerous level; so, we will try to not complain. Dr. Kushner once again said that Jake is a perfect candidate for the vaccine program, but he was tired of even trying to guess when that might happen. He also told us that the minute it gets approved we would have a phone call to get to NY. In the meantime the best case scenerio is to continue the chemo. Thanks for checking in.




Lee is flying to New York so he can meet with Dr. Kushner face to face on Wednesday after they meet about him tonight. They will hopefully decide on the next course of action. Lee will also be going to the Ronald House for an information meeting with the leading researcher of Neuroblastoma, Dr. Cheung. He is going to be speaking at the Ronald House Wed. evening to any parents who want to attend. He is going to be discussing a new discovery that he has made (which at this time does not effect Jake) as well as any other treatments on the horizon. (vaccine)

Please pray for safe travel for Lee. Also, pray for our Doctors as they are trying to make the best decision for Jake as to what is next.

Jake is having a great week. We have five extra boys at the house this week. The boys play ball with and against Luke, they are attending a baseball camp in the mornings. Jake is having a great time hanging out with them after the camp. I must say that we are all having a good time I even got to play wiffle ball with them last night. They are such good kids and a lot of fun to hang out with. I think we will all be a little sad when the house calms back down again. Kala has gone to the beach with a friend and will be back Friday.

Thanks for checking in and I will update with some news hopefully by Thursday.

Kim

Thursday, June 14, 2007 11:13 AM CDT

Jake's MIBG looked great. There was no evidence of disease. We did however have something unusual happen yesterday. For whatever reason I could not bring myself to stay in the scan area during the MIBG so, Luke entertained me while Lee and Kala went to the scan. Luke went back to check and Lee told him everything looked great. I went back while they were having the radiologist look over things so Lee and Kala could have a break. The tech comes in and tells me the radiologist wants us to come back tomorrow and repeat the scans after a bowel prep. I was totally taken back in the six years of doing these scans we have never heard of such a thing. Neuroblastoma is not usually something you even hear of associated with bowels. We go to the clinic and meet with our oncologist and he informs us that the radiologist is being cautious because there is uptake in the bowels and the only way to be sure is a by doing a bowel prep (just use your imagination). After a little conversation Dr. B was certain that in Jake's case it was the large amount of pasta he had eaten the night before at Olive Garden and told us to go on home that the MIBG looked great. He was suppose to talk to radiology, but apparently he forgot because we got a severe tongue lashing from the radiology department this morning. Hopefully all has worked out becasue we have not heard back from them this morning. Thank you so much for your prayers,
Kim

We do not know what the future holds yet, but hopefully they will not keep us hanging too long.

Wednesday, June 13, 2007 7:40 AM CDT

Jake's big scan has been moved to 9:30 this morning. I will update as soon as we know anything.

Love,
Kim

Tuesday, June 5, 2007 7:56 AM CDT

Update: Jake will have a ct scan on Monday at 12:00 - MIBG injection on Tuesday and the scan on Wednesday. We think the MIBG scan is scheduled for 3:00 Wednesday afternoon.




Jake will be having scans on June 11th and 12th in Atlanta. These are very big scans for Jake because this will determine what type of summer he is going to have. Jake is so tired of chemo; so, our prayer is that those last rounds were the last forever. Jake has been doing this for a very long time and he is tired. We are praying for God to work some more miracles in Jake's life. Please help us in praying that God will be BIG, LARGE, and in CONTROL. Please also pray for the same for our friend Sydney she will be undergoing a major surgery this Friday. This is a very scary time for their family. We love you Sim's family and we are praying constantly.

Love,
Kim

Thursday, May 31, 2007 2:39 PM CDT

Jake is at South Georgia Medical getting a red blood cell transfusion. I was afraid that this was going to happen this time we got close last time. I was afraid that his blood was tired and I was right; so, hopefully this little pick me up will do the trick. His platelets were still wonderful. His ANC is at 500 which is pretty crappy and I will have to give him a shot tonight to help boost those after he gets done with the transfusion. He is feeling okay a little tired which goes hand in hand with the low blood.

Thanks for checking in and I will update tomorrow on how Jake is feeling,
Kim

Sunday, May 27, 2007 8:37 PM CDT

We are having a nice Memorial Day Weekend. Jake is feeling good. The bookstore is closed tomorrow so the boys may go see the new Pirate's of the Carribean movie. We are waiting to hear from Jake's nurse to find out when his MIBG is scheduled and I will update as soon as I know.

Kim

Wednesday, May 23, 2007 9:25 PM CDT

The week has gone fine, slow but fine. Jake has not had any problems with the chemo so far and has continued to eat well.
We have absolutely no idea what is happening next with Jake's treatment. We cannot even speculate of course it all depends on the dreaded MIBG scan and what it shows. But, even clean or not we still have no idea what is next.
Please continue in your prayers for our friends that are battling this cancer and keep Jake in your hearts as well. Thank you for the continued love and support I know this has been a long battle, but we do depend on your prayers and kind thoughts so much. We love you all.

Kim

Friday, May 18, 2007 8:30 AM CDT

Jake is not very excited, but we head back to Atlanta on Monday. This is the last round before we scan again, which always terrifies me. In this case though want you do not know can hurt you. I will be taking Jake this week to Atlanta and Lee will be hanging out here in Valdosta with Kala and Luke.

Jake and Lee are going fishing on the gulf this weekend they are both very excited. We love to go fishing in the ocean, but we just cannot seem to find the time.

Luke and I will be headed to Dothan Alabama for a ball tournament this weekend.

Kala has not decided what she is doing yet the luxury of being a teenager.

Thank you for checking in,
Kim

Monday, May 14, 2007 5:31 PM CDT

Jake did fine through the weekend he did have to have a shot on Friday and Sunday to boost his white count. His red cells and platelets are lower than they have been in a very long time, but are still okay in the fact that he does not need any transfusions. We will do labs again on Thursday, but everything should be coming up.

Please pray for our friend Sydney www.caringbridge.org/fl/sydneysims, they have just found out that she has a new spot that is going to require surgery to remove in addition to chemo and radiation. This is a scary time for their family full of so many different emotions. Please pray for strength and guidance for their family.

Thank you,
Kim

Thursday, May 10, 2007 12:01 AM CDT

Jake is doing fine counts have began to drop, which is normal. We will test them again on Friday and he will more than likely need a little shot to boost his white cells back up. He has one more round of chemo before we do his scans again. That round of chemo is scheduled for May 21st. I am thinking they will wait a couple of weeks and then we will scan which will more than likely be the middle of June.

Thank you for checking in and for all of your prayers,
Kim

Monday, May 7, 2007 4:11 PM CDT

Well, I did not do any better updating this time either.
Jake is doing well - chemo went fine last week.
Please remember a friend of ours that has relapsed. The family is still absorbing everything, but will begin treatment again pretty much right away. Nick Franca is a kid we met in New York, but we got to spend alot of time with them while we were in Disney. He is a teenager dealing with neuroblastoma which is actually very rare - he was even diagnosed to begin with as a teenager. Nick has agreed to do a treatment that has just been discovered by the head of neuroblastoma at Sloan - it has been used in a few other cancers, but never neuroblastoma. Nick and his family are doing an extraordinary thing - in experimenting this new treatment. Thank you Nick for your bravery and our family will be praying for you. I am asking the rest of you to pray as well.

Kim

Monday, April 30, 2007 7:45 AM CDT

Jake and Lee are on their way to Atlanta. Jake will do his second of three rounds of chemo this week. Jake will begin chemo today. His counts are pretty good not as good as when he began the last cycle. The chemo should not make him sick and he should continue to feel well all this week.
Thanks for checking in and I will try to do a better job of updating,
Kim

Tuesday, April 17, 2007 12:45 AM CDT

Jake had labs done today, but we have not received the results as of yet. We still expect them to be pretty good today. I do not think we will be in the low count range until Thursday or Friday of this week. He will more than likely have to start taking shots at that time to boost his white cells. He is feeling really good right now which we are very thankful for.

I will update as the week progresses,
Kim

Friday, April 13, 2007 10:55 AM CDT

Jake is finished and they are on their way home. He has had a good week - he has felt fine and it has not slowed down his eating at all. He has also grown two complete inches since he was there the first of March. Luke better watch how Jake may catch him after all (he is only 6 inches behind). There is a large difference between them you would not know they were twins at all. Jake's blood work was also very good today. His white cells, red cells, and platelets were all high which is great. It is always very good to go into chemo with high counts. I think the boys are going to go to our local theme park tonight (Wild Adventures) and ride go-carts with a bunch of their friends. They have a great season pass offer that includes all the park admission, all the rides, and the waterpark. You can purchase the gold pass which allows them all the free go-carts and putt-putt they can stand. We have already gotten our money back with the boys. Kala has also gotten a job their for the summer being a life-guard. Which we are very proud that she is going to be life-guard certified (what a great job for a 17 year old. She will be able to take advantage of this and could work at some really cool places over the next couple of years. Well, thank you for all of your prayers this week and keep them up for next week as counts begin to drop.

Have a wonderful weekend,
Kim

Wednesday, April 11, 2007 7:14 AM CDT

Things are going well so far for Jake. Jake was a little upset when we told him Sunday night, but once he got there at got in the swing of things he has been fin. They even drove up to North Georgia where we are from to visit with Lee's mom last night and watch a little baseball at the kids (and Lee's) old school. They spent the night and are driving back to Atlanta this morning. Thank you so much for your prayers and for checking in and don't forget to sign the guestbook.

Thanks,
Kim

Sunday, April 8, 2007 4:14 PM CDT

Well, tomorrow is the big day. Jake will begin his chemo tomorrow in Atlanta. The chemo is the same that he has been having so it should not be hard on him. Like I have stated in earlier journals we are more worried about his mental state right now than his physical state. In the five years that we have been doing Jake has never complained and just did what needed to be done. He has reached a point of being sick of all of this not that he is not justified in his disgust - it is scarey for Lee and I to see him lose his edge in fighting this disease. We are hoping that the time off has given him some much needed rest so he is willing to once again do what needs to be done.

Lee or I will update as the week goes on,
Kim

Monday, April 2, 2007 2:49 PM CDT

We are still on schedule to start chemo in Atlanta on the 9th. That will be round one of three and then we will rescan. Jake is doing well. This is our springbreak week and we all are thankful for the time off from school. We all need time to recharge our batteries and get ready for the final push before school is out for the summer. We are going to head to the beach toward the end of this week for a couple of days.
Please be in prayer for all of the children with cancer and for a cure.

Kim

Wednesday, March 21, 2007 2:44 PM CDT

We received our email from Dr. Kushner late last night. He is recommending three more rounds of the chemo that we have been doing and then retesting. They have told us it will be alright to wait and start Jake's next round after springbreak; so, we can still enjoy our beach plans. Jake's next round will begin on April 9th. This is giving Jake five weeks off from treatment which is always scary, but mentally Jake needed a break. Sometimes he gets to the point of being mentally exhausted and frustrated and this is one of those times. Jake feels great and is physically ready for more chemo which is good. Now we will give him a little time to get ready to do some more fighting.

Thank you for checking in and I hope everyone is starting to see some wonderful spring weather. Besides the pollen the weather has been great here in Valdosta.

Kim

Saturday, March 17, 2007 8:24 PM CDT

We got Jake's MIBG scan report late Friday and this is the first time I have been near a computer. Jake is CLEAN!!!!! He has no evidence of disease. Dr. Kushner in NYC is going to meet with the other doctors more than likely on Tuesday evening and they will let us know what is next.

Thanks for keeping Jake in your prayers,
Kim

Monday, March 12, 2007 9:48 PM CDT

Jake is feeling better, but he is still having problems with his eyes. Jake and Lee are leaving in the morning to head to Atlanta for MIBG injection and then scan on Wednesday. As usual this is such a nerve-wrecking time and I tend to get very irritable; so, pray for Lee and the kids. This is the only test that Atlanta wanted to do at this time. We are also very nervous about being in Atlanta. Lee and I both already feel like we are getting out of radar range for New York. We emailed our Doctor in NYC about our concern for Jake last week with the eyes and other symptoms he was having and he basically told us he could not help.

Please keep Jake in your prayers this week and especially on Wednesday. Please pray for a clean scan.

Love and thanks,
Kim

Tuesday, March 6, 2007 3:52 PM CST

Jake has not felt well at all this week. He has not had much energy and has really not eaten all that great either. We had labs done today and they are actually very good. He has not ran any fever; so, the doctors feel it is just viral and will run its course. He actually does feel a little better today and has eaten pretty good. His blood count is due to drop at the end of this week; so, pray that his body has rid itself of the virus before his counts drop.

Thanks,
Kim

Saturday, March 3, 2007 8:32 PM CST

Jake and Lee arrived home yesterday and we have already had to make a trip to youth care today. Jake has been unusually sluggish after this chemo - the last two times it has not effected him at all. We also noticed that his eye was very red and was starting to look like pink eye; so, we new we needed to start treating that before his counts begin to go down. Hopefully, he will feel much better tomorrow. Jake will be going back to Atlanta the week after next for an MIBG scan that will let us know where we are at.

I will update again soon thanks for checking in and thank you for always remembering us in your prayers,

Kim

Tuesday, February 27, 2007 1:52 PM CST

Jake and Lee are in Atlanta and things are going well. Jake has finished day two of chemo and seems to be feeling fine. He really misses being at home he was only able to be home for one week before he had to go back. Atlanta is a little better than New York in regards that they are staying with Lee's Brother and Sister-in-law which is really fun for Jake. Paul will play video games with Jake (which we all know how much he loves his video games).

I just wanted to say a big hello to all of our Oakwood friends it has been so wonderful to here from you all. When I read Jake's guestbook it puts a smile on my face and joy in my heart to know that Oakwood is praying for him. We love and miss you all and thanks again for signing and letting us know you are there.

Kim

Friday, February 23, 2007 7:25 AM CST

Hello Everyone,

Jake will be starting round 3 of chemo on Monday. We have had some bad news thrown our way yesterday. We were in the process of getting plane tickets and everything set up when our Nurse from New York called Lee and read him an email from our Doctor in Atlanta. It stated that Jake's insurance was no longer going to be accepted in NYC for procedures that can be done in Atlanta. We will be starting the chemo now in Atlanta. We are still try to take all of this in and are not quite sure what our best course of action is at this time. We have actually done more chemos in Atlanta than NY; so, that is really not a big deal. The part we are most upset about is the fact that Jake's scans will no longer be able to be done in NYC. He has not had scans done in Atlanta for over 2 years they have all been done at Sloan. It is not that Atlanta is not capable it is just that by doing his three month scans in NY this keeps us in their vision so to speak. We are afraid that now we will be out-of-sight, out-of-mind with our Doctors in NYC. We are persuing some different options and Lee will talk with our Doctor next week in Atlanta and see if he has in suggestions.

Please keep this situation in your prayers this is not something that we were planning on dealing with. Just another curve ball in the battle of cancer, I guess.

Kim

Tuesday, February 20, 2007 3:52 PM CST

I am so sorry, I just realized that I had not updated the website. We are home!!!!!!!!!!!!! Jake did have to have a G-Shot on Friday and again on Sunday. We will have labs drawn tomorrow to see if he needs another or not.
Our plane was delayed for an 1 1/2 hours out of NYC on Friday, but we did not miss our connector to Atlanta which both of us were so thankful for. We stayed in Atlanta over the weekend for Kala's cheer competition with over 70,000 cheerleaders running around ranging from preschoolers all the way to college age. We got to see Georgia and Florida's competitive squads perform. Kala and I had a real good time, I am not so sure about Jake and Lee, but they survived.
We had yesterday off because the bookstore and schools were closed for the holiday. We are back in the swing of things today and are so thankful to be home.

Have a great week and thank you for all the prayers and kind words while we were in NYC,
Kim

Thursday, February 15, 2007 1:45 PM CST

Jake's counts are still dropping and his ANC is just below 1000 the magic number of being more vulnerable to infection. We will go back in the morning for bloodcounts and will more than likely get a G-shot to boost our white cells to bring them charging back before we leave for the airport. The airports have been an absolute mess for the last couple of days; so, I am hoping that they will be back on track by tomorrow afternoon.

Thanks for checking in,
Kim

Wednesday, February 14, 2007 8:20 PM CST

Jake is feeling well and his counts were still good yesterday we will do them again tomorrow. As you can see from the pictures above we did make it to the dog show and it was alot of fun. Jake and I both actually enjoyed the snow today. Tomorrow we are suppose to be completely frozen here; so, it will be very interesting getting around. Jake and I have already started packing and getting ready to come home Friday.
We had a Valentine's Party here at the house tonight and that was fun. We made our own pizzas. Jake had a blast pounding the dough and trying to throw it up in the air.

Thanks for checking in and Happy Valentine's Day,
Kim

Monday, February 12, 2007 1:44 PM CST

We have finished day three of radiation. Jake's counts will be dropping this week due to the chemo he had last week; so, we will be doing bloodwork tomorrow. We are more than likely going to be doing some more rounds of low dose chemo over the next few weeks and then repeat scans to see what we will do next. I will know more Wednesday after the neuroblastoma team meets on Tuesday evenings. Jake is feeling good right now and has no complaints. It is even bearable outside temperature wise. We may be getting some snow here Tuesday evening.

Well, our plans right now are to fly out on Friday so please pray that all goes smoothy we are both so ready to go home.

Kim

Friday, February 9, 2007 10:33 AM CST

Jake is through with chemo and day 2 of radiation. We are already back at the Ronald House. I wanted to go out and do a little shopping, but I do not think I can take the wind. It is almost 30 today, but the wind is gusting up to 30 miles per hour. (burrrr) Jake had to chase his hat a couple of times it blew off before he could catch it. Well, I do not think there is alot going on this weekend here at the house, but Michelle and Sydney if you are reading this the Westminster Dog Show is on the schedule for Tuesday. I know how much Sydney loves dogs.

Well, I hope everyone has a great weekend.
Kim

Wednesday, February 7, 2007 5:17 PM CST

Jake was Mister GQ tonight. He was a part of a photoshoot at the Waldorf for the big gala fundraiser they are holding there for the Ronald House. Him and four other kids from the Ronald House got all dressed up to be the cover for the announcements that are going out. He did well he did not smile, but he was scowling either. He did not really understand what an honor it was to be chosen, but he did good and I was proud.
Chemo is going fine and we are starting radiation tomorrow. We are on schedule to fly out next Friday. We will be flying into Atlanta where Lee, Kala, and Luke will pick us up because Kala has a big cheer competition in Atlanta for the weekend.

Thanks for checking in,
Kim

Monday, February 5, 2007 8:39 PM CST

We are here and cold does not even begin to describe it. For us South Georgia Folks 17 and a windchill of 4 degrees is just plain cold. They do not even sell clothes in South Georgia for weather like this. Our plane was delayed about an hour today, but we still made it in time for day one of chemo. Everything went smooth and now we are trying to get the radiation worked out; so, it is over with by Friday week or sooner if possible. Jake has been hanging out with a few of his buddies here at the Ronald House and having a good time.

Thanks for checking in and I will update again soon,
Kim

Wednesday, January 31, 2007 9:06 PM CST

Jake and I will be headed to the frozen tundra on Monday. We are hoping to get there in time to start day one of chemo. If we do not make it they told us someone would meet us in clinic on Saturday to finish the last day since it only takes an hour to administer. I am not sure if we are starting radiation on Tuesday or Wednesday. I do know that Jake will have seven days of radiation.

Please pray for safe travels and for Jake's body to continue to respond to the treatments that are being done.

Kim

Wednesday, January 24, 2007 12:42 AM CST

We are not doing the MIBG Therapy right now. We are still waiting for the cardiologist to clear Jake for MIBG Therapy. We are not sure how long that is going to take and it may even require some further tests. It also takes a couple of weeks to set everything up with the insurance. We will however be returning to NYC on Feb 5th to begin radiation and chemo. The radiation that was performed around Christmas almost eliminated one spot and greatly diminished the other; so, the spots are responding to the radiation. They have decided to go ahead and radiate the third spot along with low dose chemo and try to clean Jake up. We will then re-evaluate for MIBG Therapy in two to three months. We are going ahead with this because as most of you know when you sit around too long and do nothing things tend to get worse and no one is sure how long it would take to get all of the kinks worked out for MIBG therapy or if we could because of Jake's possible heart condition. Which is something else all together, the Doctor's in Atlanta found a condition called WPW, (which envolves the electrical currents around your heart),
right after we found out Jake had cancer. However, the Doctors in NYC have never be able to detect it, but since he was previously diagnosed they have to treat it like he has it until they get enough evidence to proof it does not exist. This has been very tricky because the type of condition Jake may or maynot have can disappear for lack of a better word. It is kind of like the rattle you have in your car that you hear all the time, but as soon as you take it to get it fixed the noise stops. That is the case with Jake it was detected once, but every other time they have ran an EKG it has not been detected. So, you always have that doubt as to which way to lean.

Well, it looks like things are set for now and Jake and I will be heading up to begin on the 5th. Jake is pretty excited because for some reason that is the day he chose that would be exceptable (in his mind) to return to NYC.

Thanks for checking in and I will update as things change,
Kim

Tuesday, January 23, 2007 7:41 AM CST

I wanted to give everyone a quick update: Jake's ct scan was normal and there is no evidence of disease in Jake's bone marrow. Bloodwork and his urine test are normal as well. We are waiting on the MIBG scan results which we should get today or tomorrow. The neuroblastoma team will be meeting tonight regarding Jake and what we are going to do next. Please pray for wisdom and guidance. We should receive an email tomorrow letting us know what they are recommending for Jake.

Thank you for always continuing to lift us up in your prayers,
Kim

Friday, January 19, 2007 9:43 PM CST

Jake was able to get his injection for MIBG today. His scan his in the morning. Jake's ct scan came back normal. The guys are doing well in NYC just trying to stay warm. Lee had a meeting today with the Doctor who administers the MIBG therapy which is the next trial they are leaning toward for Jake. Jake has three obstacles to overcome to be eligible for this trial. Lee and I still have a lot of questions and are praying for guidance in this choice as to what is best to do next for Jake. Please pray that God will show the Doctors and us without doubt the next step.

Thank you,
Kim

Wednesday, January 17, 2007 4:26 PM CST

Day one was long and uneventful. Jake had bone marrow pulls, ct, and a echo test today. The main test that we do is a mibg, unfortunatly the injection for that test has been delayed. We will have tomorrow to hang out in NYC with nothing to do. The mibg injection is Friday at 1:00 and the scan will be done Saturday morning. We will get the official results next Monday or Tuesday. Jake and I will head back to Valdosta Saturday evening.

Lee

Tuesday, January 16, 2007 9:45 PM CST

Jake and I are back in NYC. We have been home for 2 weeks and it has ben GREAT! But, now it is bak to work. We are up here for scans. Our immediate future is unknown.Ihope to have some direction by the end of the week. I will keep updateing as things change.

Lee

Sunday, January 7, 2007 12:59 AM CST

We have made it back to Valdosta. Jake has a head cold, other than that he is feeling okay. We have been in Disney with 40 people from the Ronald Mcdonald House of NYC over the last couple of days and had a blast. It is a lot of fun too hang out with all of those people. The first day of class for VSU starts tomorrow, so we should be very busy over the next few days. Jake will be bagging up a lot of books for us. Jake and I will return to NYC on January 16th for a check up. After that "the next step" will be decided.

Lee

Friday, December 29, 2006 9:52 PM CST

Lee and Jake are back in Valdosta they flew into Atlanta today. They rode to Valdosta with his brother, sister-in-law, and mom they are on their way to Tampa for the Tennessee bowl game. They are staying with us tonight and will be heading to Tampa tomorrow. We are all glad to see them and spend just a little time with them.
Jake is feeling fine and is very glad to be home he has had his feel of NYC for a couple of days at least. They will have two full weeks at home before they have to head back for scans and a decision as to what is next. Please pray for wisdom and guidance and that what we have been doing is holding Jake's cancer at bay. We are fairly certain we are heading into MIBG Therapy next, but as all of you know that have been following Jake's progress nothing is for certain.
Our family would like to wish you all a Happy New Year.
Our family would like to take the time now to thank you all for showing us so much love this past year. You have all helped to carry us through this journey and we will forever be grateful for your love and prayers.

Kim

Wednesday, December 27, 2006 11:06 AM CST

Wow, we had an amazing Christmas. We went to Disney World for Christmas with my parents. The weather held out and did not rain until Christmas day; so, we did a movie with 10,000 or so of our closest friends. (ha!ha!) Jake came out of his riding shell and rode most of the big rides at Disney he was so proud of himself and he could not stop grinning.

Lee and Jake have returned to NYC to finish radiation which will be done and Friday and they are flying out Friday and will arrive back in Atlanta by 1:30. They are riding back to Valdosta with Lee's brother, sister-in-law, and his mom.

Jake's blood counts are not great; so, he is getting a g-shot to boost his white cells back up. They are saying a shot today and tomorrow and things should get back to normal.

I hope everyone had a wonderful Christmas feeled with so much joy,
Kim

Wednesday, December 20, 2006 5:34 PM CST

Hello Everyone,

Jake did receive dose 1 today it took all of two minutes. It is kind of a bummer that we have to be here this far from home for two minutes, but that is cancer fighting.
Jake will have his blood checked again tomorrow please pray that it is coming up and not dropping more.

Jake is having a good time hanging out in the computer room with the new buddies he has made.

I did find out to day that Jake's dosage does not allow him to double up, but it can be reduced to seven days instead of ten which would allow everyone to be home before New Years and to have a couple of weeks off before we have to be up here again.

I would also like to wish my mom and dad a Happy Anniversary they are celebrating there 40th tomorrow.

Happy Anniversay Love you both and thank you for being such role models,

Kim

Tuesday, December 19, 2006 3:43 PM CST

Hello,

We had our setup today for radiation. We did not get to do dose one it will be tomorrow at 1:00. I am trying to get everything worked out so we can finish radiation on the 29th, but I have not been given an answer yet. We will have to double up three days to get that done and I don't know if Jake's dosage will allow that. Jake's blood has dropped quite abit, but they are still good.

Well, I will update again soon,
Kim

Saturday, December 16, 2006 5:15 PM CST

Jake and I have had a great day in NYC we went to the American Natural History Museum this morning and we walked a little through the west side of Central Park which we had not seen before. We were also given two tickets to Mary Poppins third row center to be exact from a good friend at the Ronald. I was not sure how we would like it I have actually never been very crazy about the movie, but the show was amazing. Jake and I have actually decided we liked it better than Lion King or Beauty and The Beast. The performers were given such a wonderful gift in this life. Jake is now hanging out in the Computer room with a new friend he has made named Sam.

I hope everyone has a wonderful weekend and thanks for checking in,
Kim

Thursday, December 14, 2006 7:55 PM CST

Jake and I ventured to Macy's today and met the Macy's Santa. The crowd was not too bad at all. Jake is feeling really good and is eating just fine. We have one day left of chemo tomorrow and chemo is over for awhile. We are waiting to see if they are going to start radiation next week or if we are going to wait and start after the New Year. We should have an answer about that tomorrow.

Thank you for checking in,
Kim

Tuesday, December 12, 2006 5:37 PM CST

Hello To Everyone,

Jake and I met with Dr.Wolden today and we are doing ten days of radiation and we are going to radiate all three spots. Thank you for your prayers the schedule is going to work out we will be home for Christmas and Jake should feel fine. We are going to do five days before Christmas and we will fly back up here after Christmas for the next five days.

If it is not raining to hard tomorrow we are going to head downtown and try to see SantaLand and the Santa at Macy's, but I am not sure either of us will be able to tolerate the crowd (but we'll see). Well, believe it or not the place we wanted for dinner does not deliver; so, I have to head back out to pick it up.

Thank you so much for checking in,
Kim

Monday, December 11, 2006 7:12 PM CST

We had a wonderful evening after we left the hospital this afternoon. We went down and saw the big tree and watched the people ice skating and then we walked up 5th Avenue about 10 or so blocks to Central Park looking at all the store windows along the way and then we watched the kids ice skate in Central Park. The Weather was just perfect to walk around this evening just cool enough to feel Christmasy, but not too cold too enjoy yourself.

We have an appointment tomorrow at 10:00 with Dr. Wolden the radiologist; so, we will see. We will do his hour of chemo after the appointment in the morning.

Kim

Monday, December 11, 2006 10:34 AM CST

Hello Everyone,
We made it to NYC late last night our trip was uneventful just the way we like it.
We are here at the hospital now and we have had our blood checked (the Doctor said his counts are not just good they are great) and we have signed our consents to start chemo. Jake will have cyclotoxin and topotecan they will be infused for thirty minutes each for five days; so after today our visits to the hospital will be much shorter. We do not have an appointment set yet with the radiologist and Dr. Kushner has called back himself to get the process going hopefully a little faster. Dr. Kushner also told us that Dr.Wolden will look at the spots and we may actually being radiated all three spots instead of just the one. Hopefully, we will have a better fix on things tomorrow and have somekind of a schedule for the radiation.

Thank you so much for checking in and signing the guestbook I look forward everyday to reading the wonderful notes everyone leaves,
Kim

Saturday, December 9, 2006 10:08 PM CST

Jake and I are leaving for NYC tomorrow at 5:00 he will start chemo Monday. Our Nurse was working real hard on Friday to get us in with the Radiologist asap. Jake will do chemo Monday - Friday of this week and then we can come home as soon as the radiation is over, but we have no idea what that is going to consist of until we meet with the radiologist. Please pray that we get in soon and get the scheduling worked out; so, we can get home for our special Christmas trip. Jake is not very excited about the trip, but as usual he will adapt and do what has to be done. Please pray for safe trip and all of the scheduling to work out.

Kim

Thursday, December 7, 2006 9:11 AM CST

Well, we have an official unofficial report from Dr. Kushner, Jake has three total spots the two we did have and one on his femur bone. They want to start radiation on the spot on his femur. Jake and I are flying back out to NY next week to start that process if all goes according to plan we should be back on the Friday before Christmas. We have a special trip planned for Christmas which the Doctors are aware of; so, prayfully everything will work out so we can keep our Christmas plans. Jake is in fairly good spirits and they are on a plane now flying home.

Thank you all for your continued love and support,
Kim

Wednesday, December 6, 2006 12:48 AM CST

The CT scan is normal, but it looks like we are now dealing with more spots than the two in Jake's hip area. In Lee's unprofessional opinion it looks like there are anywhere from four to six spots. Jake is in bone marrow pulls right now. Lee is going to hang out at the hospital this afternoon to try and meet with Dr. Kushner and see what he is possibly thinking. We are certain no final decisions will be made today Kushner will want to meet with the team and lay out several different options and they will decide on what they think is Jake's best chance.
Please once again pray for wisdom and direction in our path ahead.

Love,
Kim

Wednesday, December 6, 2006 11:47 AM CST

We do not have anything official yet, but Lee said the spots looked exactly the same as they did in September and we may be looking at one new spot as well. Lee will have a meeting with Dr. Kushner today, but I am sure he will want to speak with the team before any decisions are made. The only thing we know is there is more to do.

Kim

Monday, December 4, 2006 8:19 PM CST

Tuesday Evening Update:
Lee and Jake arrived in NYC and besides the fact that they are cold everything went fine today. Our big test is at 9:00a.m. in the morning.


Hello Everyone,

Jake and Lee are on their way to Jacksonville to catch a plane around 6:00 a.m. in the morning to NYC. Jake is now having a full work-up instead of just the one test. We decided since he was only three weeks away from needing his full work-up anyway we might as well do it now.

Lee and I are asking that you join us in prayer that the scans are much improved. We both know that God is still at work and performing miracles every second. Please pray for our friends that are also fighting, God has plenty of miracles to go around. Our friend Sydney has started antibodies again this week in NYC pray that everything goes the way it is suppose to go and that she will not develop HAMA (resistance to the drug).

Thank you so much and I am sure Lee will update from NYC as things develop.
Kim

P.S. We want to say a Praise for our sweet friend Canon scans are clear so far.
Way to go Canon!!!!!!!!!

Tuesday, November 28, 2006 7:05 PM CST

I just wanted to give a quick update, Jake and Lee did not get to go to NYC this week We are now on the schedule for next week. Jake is scheduled for injection on Tuesday and scan on Wednesday. This is been very stressful waiting to find out what is going on and what is happening next. Jake has complained a little with leg pain and even a little is too much. His body has needed the time to recover, but I so much hate giving the cancer anytime to have a mind of its own.

Thank you so much for checking in on us and all of the prayers that I know are being said for Jake and our entire family.

Kim

Monday, November 27, 2006 10:59 AM CST

Well, cancer fighting is never dull. I just received a call from Sloan and the nuclear medicine they inject Jake with cannot get delivered today for injection tomorrow because of a snowstorm in Vancouver. They are going to let us know if it looks like it will be delivered on Wednesday or not. If it is hopefully we will be able to keep our plane tickets and still fly up in the morning with injection on Wednesday and scan on Thursday. Hopefully, things will work out.

Kim








Sorry for the lack of updateing. No news is good news when it comes to cancer fighting. Jake had a great Thanksgiving week. We went back to North Georgia for the week and visited with some old friends. Jake is eating well and feeling great. Jake and I are leaving tomorrow morning at 6:00 a.m. on a flight to NYC. He will have a mibg injection at 2:30 and then a scan Wednesday morning. After the scan the "next step" will be decided. I will update after we arrive and keep everyone posted on the scan results.

Lee

Thursday, November 16, 2006 7:43 AM CST

Jake is starting to eat. He has found a few things that he will try. Pasta has been the main thing. He tried pancakes this morning also. If he has a craving we try to put it in front of him. We have never had this much trouble finding food he will eat. The stomach pain continues to get better. He is only takeing 1 pain med a day now. On Monday he was taking 6 a day. I think with more time he will continue to improve. We are going to North Georgia for Thanksgiving. It will be good to see family and old friends back home for him. I have not heard back from NYC on exact times and dates for his work up, but I know it will be the week after Thanksgiving. Thanks to all for the prayer.

Lee

Tuesday, November 14, 2006 8:17 AM CST

Jake is slowly starting to recover. His appetite is still not good. The stomach pain is much better though. We are now going to NYC on Tuesday November 28th for scans and work ups. Dr. Kushner wants to see Jake and then decide the "next step". We will take the next couple of weeks and rest and recharge Jake's body. I will update as things continue to change.

Lee

Sunday, November 12, 2006 7:21 PM CST

I am so sorry for the late update, but we got home last night around 7:00. Jake is still having some pain, but it is not too bad. He has started getting his appetite back slowly but surely. He has wanted tunafish sandwiches of all things.

It is looking like we will be in NYC the week after Thanksgiving for scans and a decision as to what we are going to do next.

Thank you all so much for all that you have done for our family,

Kim

Friday, November 10, 2006 1:32 PM CST

Well, sorry for the late update, but not much has changed. Jake is feeling much better still no appetite, but that is not very unusual. They are stopping the tpn today so hopefully that will increase his appetite. All of the doctors agree that being home will also help to increase his appetite. We are on schedule to hopefully go home tomorrow.


Lee and I cannot begin to express our gratitude for the outpouring of concern for our family. Your prayers have been instrumental in Jake's recovery.

We feel so blessed to have you all for family and friends,

Kim & Lee

Thursday, November 9, 2006 10:28 AM CST

Jake is still morphine free. His wbc are in the normal range and his anc is also very high. They will be stopping two more of his antibiodics today. They are also going to stop his nutritional supplements for a couple of hours today to try and help stimulate his appetite. He was able to eat a few bites of toast (mom making him) this morning. We are looking over the lunch menu now. We are going to take it slow today and hopefully he will be a little hungrier tomorrow. They told us we are shooting for the weekend to get out of here.

Thank you to everyone,
Kim

Wednesday, November 8, 2006 10:50 AM CST

I wanted to let everyone know Jake has had a good day. He has not had any morphine as of yet. I have stepped out to the business center and he is with a volunteer playing goldfish. He has actually smiled and laughed today.






Jake is more alert today. He has been watching tv and is on the computer playing games. His anc is at 1610 today and the white cells are up as well. We are cutting the morphine to as needed and the doctor wants to start him on a soft diet. He is also going to start cutting back on Jake's many antibiotics that he is on. We are heading in the right direction.

Please keep praying,
Kim

Tuesday, November 7, 2006 8:48 AM CST

We have not seen any doctors yet today, but I wanted to give everyone a heads up Jake's white cells are up from 0.32 to 0.97. This has brought his anc from 120 to 500 when his anc reaches 1000 he is not neutropenic anymore.
Another bit of good news his platelets stayed the same this is the first time they have not dropped from the day before (unless there had a been a transfusion from the day before). So, we are headed in the right direction. He is still having some significant pain on his right side where the colon is the most swollen. The Doctors have told me this may get worse before it gets better because now that the white cells are waking up they are all going to the colon and fighting the infection. I told Jake his is having a battle in his tummy and we were definitely cheering for the white knight.

Kim

Monday, November 6, 2006 6:43 PM CST

Jake had some very serious pain during the night and early this morning, but since about 7:00 a.m. this morning he has been pretty good. He was able to sleep pretty good during the night, the pain was horrible when he had to move. Jake had an ultrasound at 5:30 tonight, but we will not get any results from that unless there is somekind of emergency with it. It has been two hours since the scan; so, I am hoping that means no emergency.
Jake's whitecells went from 0.24 to 0.32. His anc is up from 50 to 120; so, we are making progress.

Thanks to all for checking in on us,
Kim

Sunday, November 5, 2006 10:39 AM CST

Jake had a really good evening last night with not very much pain. He took a walk in the hallway a short one, but a walk none the less. He was up playing on the computer and actually having conversations with Lee and I. I just new his white count was starting to bounce back. I was pretty disappointed that it only went from 0.23 yesterday to 0.24 today. The low end of normal is 4.5 so you can see we have a ways to go. However, we have had a rise in white cells for the last three days, small, but up is up. Platelets have continued to drop, but I do not think they are transfusing today. Lee is going to head home late today to be with Kala and Luke for a few days; so, I will be holding down the fort here.

Thank you all for the prayers, I know that God will hear and answer.

Kim

Saturday, November 4, 2006 12:08 AM CST

Jake had a good night. He received morphine at 1:00a.m., but did not need another dose until 9:00a.m. this morning.
We met with another Doctor this morning and basically what we are dealing with is a catch-22. Jake's colitis was caused from the irrono he received two weeks ago and it is not going to get better until his white cells rebound. Right now his white cells cannot rebound until the colitis is better. So, basically it is a waiting game. We will continue on antibiodics and GCSF shots to boost his white cells and wait for his body to mend itself. We are waiting today to meet with a gastro doctor to see what we are going to do about Jake's nutrition. Jake has lost 15 pounds since he began the chemo on October 16th.

Please continue to pray for white cells,
Kim

Saturday, November 4, 2006 12:08 AM CST

Jake had a good night. He received morphine at 1:00a.m., but did not need another dose until 9:00a.m. this morning.
We met with another Doctor this morning and basically what we are dealing with is a catch-22. Jake's colitis was caused from the irrono he received two weeks ago and it is not going to get better until his white cells rebound. Right now his white cells cannot rebound until the colitis is better. So, basically it is a waiting game. We will continue on antibiodics and GCSF shots to boost his white cells and wait for his body to mend itself. We are waiting today to meet with a gastro doctor to see what we are going to do about Jake's nutrition. Jake has lost 15 pounds since he began the chemo on October 16th.

Please continue to pray for white cells,
Kim

Friday, November 3, 2006 10:23 AM CST

Please pray for only the peace our Lord can provide for the Websters. Lana Beth went to be our Lord early this morning.


Jake had an okay night. We have had to give him a couple of doses of morphine. The pain is not any worse, but he is just so tired of being in pain. We are waiting on the Doctor now to see what or if anything else is going to be done. The Doctor told us last night this is a very common thing for cancer patients and premie babies. She said in ten days Jake will completely be back to his old self. We have Jake's labwork back and his whitecells are still not coming up at all. The platelets held after the transfusion he had yesterday morning. His whole blood has dropped, but still not below the transfusion mark. Lee and I are hoping they will transfuse anyway because it is close.
Lee and I are still very concerned that the whitecells are not rebounding this has never happened to Jake before in all of this time of fighting this beast. Jake has also never had an infection like this before either.

Thank you for your continued prayers and all the kind words they are much needed.

Kim

Thursday, November 2, 2006 5:56 PM CST

Well, it has been a very long day, but we have finally made it to Atlanta. Jake did fairly well on the ride, but started experiencing quite a bit of pain about 20 minutes out from the hospital. We are just waiting on the doctor to read over all of the information we brought with us and hopefully they will begin some type of treatment soon.

Thank you all again for the kind words and many prayers,
Kim

Thursday, November 2, 2006 5:52 AM CST

I just wanted to give everyone a quick update. We are going to transport Jake to Atlanta today. We are presently waiting to see if he is going to need any transfusions before we leave. Jake is resting more comfortably now, the pain has eased up some. Our Doctor, Lee, and myself all decided last night that the oncology department at Scotish Rite would be better suited to get Jake well. SGM is fully capable of handling all the things that Jake needs it is just Scotish Rite can do everything much faster in regards to scans, medicines, transfusions, and surgery if Jake requires it. Jake could still possibly need surgery. Right now he just needs rest and please pray pray pray for his white cells to rebound quickly; so, his body can help fight off this infection.

Thank you all for the checking in and signing the guestbook it is such a comfort to know people are praying.

Kim

Wednesday, November 1, 2006 11:54 AM CST

New Update
We are not going to be able to give Jake the anti-inflamatory medicine that would help with the swelling. That type of medicine will effect his blood counts; so, at this time we do not have anything that will help his pain. We could give him morphine, but that is such a horrible drug; so, please pray for the three i.v. antibiodics that he is on to kick in asap.




Jake does not have appendicitis, he has colitis which is an enlarged colon on the right side. That is what is causing the pain. Thankfully, this can be treated with antibiotics. They will also give him an anti-inflamatory medicine which will help with the swelling around his colon. He is still feeling horrible and is in a great deal of pain.
But we are praising God that we do not have to have surgery because with such low counts that would not have been good. We are not out of the woods yet, but we are breathing a little bit easier.

Please keep praying,
Kim

Wednesday, November 1, 2006 7:17 AM CST

NEWS:
They are fixing to do a catscan on Jake they are afraid that it is his appendix. Surgery is a very scary option right now because of the whitecells and platelets being so low. Please pray that it is only dehydration or a stomach virus.



We have had to rush Jake to South Georgia Medical he is having severe stomach pains and throwing up. Lee and Luke are there with him now getting things started and I am at the bookstore getting things started here. We are not sure what is up this is the first time in all the years that something like this has happened. We will let everyone know what is going on as soon as we know.

Thank you for the prayers that I know will be going up for Jake.

Kim

Tuesday, October 31, 2006 1:29 PM CST

Jake had labs drawn this morning and I finally got the results back. We are heading to South Georgia Medical for a platelet transfusion. His whole blood is still pretty good. Jake is still not feeling to well and is not eating much at all. He is suppose to start chemo again on Tuesday; so, he has one week to bounce back. I would like to stay on schedule, but if we have to postpone a few days to a week that will be okay too.

Thanks for checking in,
Kim

Monday, October 30, 2006 10:39 AM CST

Jake is home. He came home yesterday afternoon. All of his hair has come out, but it will grow back. We have emailed the doctor in NY about when to start round 2. We are set up to start next Monday, but I am not sure Jake will be ready. We go for blood work up tomorrow and that will give us a better picture. I will update after the results come in tomorrow.

Lee

Saturday, October 28, 2006 6:13 PM CDT

New Update for Sunday Oct. 29th:

Jake is getting one more round of antibiodics and then he is coming home.




Well, we are still here at the SGM. Jake did receive platelets this morning, but he did not need whole blood. His white cells have come up just a little and his anc has climbed a small amount. He is still experiencing fever spikes not near as high as before nor as often. They are going to check his counts again in the morning and if his cultures have not shown anything we will be heading home tomorrow.

Please pray for our friend Lana Beth and the family. Hospice has been called in. We are still praying without ceasing. I know God is in control, but I do not understand why this has to happen. Lana is a neuroblastoma patient and was diagnosed just a couple of months after Jake four years ago. They are also from the Chattanooga area; so, we had the same Doctor. We were also in Atlanta and NYC together. We have gone to Disney with them the last two years when we go with the Ronald House from NYC. We have such a bond with this family and our hearts are absolutely breaking.

Kim

Friday, October 27, 2006 8:27 AM CDT

Well, the fever came and we are at South Georgia Medical. We actually checked in yesterday and will more than likely be here until Sunday.
He felt pretty bad yesterday, but he has already had three rounds of antibiodics through his line and his fever spikes are not quite as bad.
His red cells are still pretty good, but his platelets are low. His platelets dropped from 67,000 yesterday to 30,000 today. We will transfuse at 20,000 and at the rate they are dropping we will more than likely have a transfusion tomorrow.

Thank you all for checking in,
Kim

Friday, October 27, 2006 8:21 AM CDT

Jkae's blood counts are very low. This is a normal reaction to chemo. He ran a 103 fever yesterday and is in South Georgia Medical Center. They are giving him strong antibiotics and motrin to help his body recover. If all goes well he will be released on Sunday and get to come home. Kim and I are takeing turns staying with him, while the other handles Luke and Kala. Cancer fighting is never dull!

Lee

Wednesday, October 25, 2006 8:19 PM CDT

Jake is starting to not feel so well. It looks like his counts are starting to drop which is expected. We will be going for labs and getting the shot to boost his white cells tomorrow.

Our family is asking all of our prayer warriors to please pray for our friend Lana Beth. Lana fell out of her father's truck and has broken her leg. This is a very serious situation for this family. When Lee spoke with the family earlier Lana was sedated while they tried to decide what to do. They cannot put a cast on Lana because she needs surgery on her leg, but they could not do surgery because her platelets were too low. We do not know what has been decided, but we do know how extremely serious this is. Please pray, pray, and pray.

Thank you,
Kim

Sunday, October 22, 2006 1:24 AM CDT

CORRECTION:
Jake's first set up labs will be Thursday not Tuesday. He will also be getting his neulasta shot to help build up his white cells. We are very lucky most kids have a shot that they have to take daily for usually around five to seven days, but Jake is big enough now that he can have neulasta which is only a one time shot.


Well, I cannot seem to sleep tonight; so, I thought I would let everyone know we are home. Jake had an uneventful day five of chemo. I knew he was starting to feel better because he was planning his Sunday menu. He is still a little week from being so sick, lying around all week, and not eating. He should have a couple of good days before his blood counts start to drop. We will have to start watching for fever toward the middle and end of this upcoming week. He will have his first set of labs done on Tuesday.

Thank you all for the kind words and all of the prayers. Jake loved all the notes from his friends. The notes are so encouraging for Lee and I as well. I will keep everyone updated as Jake's week progresses.

Love,
Kim

Friday, October 20, 2006 8:02 AM CDT

Thursday was a little better for Jake. He was actually able to eat a little fried rice and some chick-fil-a chicken nuggets. He did not have any chemo or anything else during the night, but he was still not able to sleep very much. He also did not sleep during the day. He is already up this morning just hanging out. He is still feeling very nauseous which I am hoping will get better as the day goes on. We have two days left of chemo and then we are headed south.

Kim

Thursday, October 19, 2006 10:46 AM CDT

Day 3! The week is moving along quickley now. Last night was better, but still hard. He is very tired today. His body has been beat up pretty bad by the drugs. He is resting now though. He has completed 2 of the 3 chemo drugs and will finish the last one over the next 3 days. Kim and I are tagging. She will finish the round with him. I have to get back to Valdosta. Jake will be resting and hopefully will get to come home Saturday. I will keep you updated.

Lee

Wednesday, October 18, 2006 3:18 PM CDT

Day 2 has been terrible! The citoxon chemo is kicking Jake's butt. He started getting sick this mornining at 3:00a.m. and has had little or no relief. We have tried zofran, kytrel, benadril, maronal, in large amounts but nothing is slowing it up. If he moves, he throws up. He has to urinate every 30 miniutes to keep the chemo flushing through his system. The citoxon will be over around 2:00 a.m. tomorrow, but he effects will last a couple of more days. We have had little or no sleep, but that is the way cancer fighting goes. Pray he will get some relief soon.

Lee

Tuesday, October 17, 2006 7:35 PM CDT

NEW UPDATE WEDNESDAY MORNING:
Lee told me late last night that the chemo drug that Jake takes for 3 days started last night instead of this morning. That is the drug that we thought would cause him to be sick. Well, it did not disappoint Lee said it began at 3:00 this morning and he was sick every 15 minutes until finally at 5:30 Lee was able to get orders for a medicine that knocked him out. I talked with Lee at 7:00 and Jake had still been sick a few times since 5:30. I spoke with him again at 8:00 and it was not much better. Please pray today that they will be able to get his anti-nausea medicines worked out.



Well, I am updating for Lee he does not have internet access today. He is hoping for it tomorrow. Dr. Bergsagel corrected us today, Jake has not actually had vincristin before today. He told Lee that it is a very old chemo drug, but is rarely ever used for neuroblastoma. Dr. B said it was a very powerful drug with very little side-effects and Jake is receiving a small dosage. The drug is actually pushed in and they were able to push it in in about five minutes. He also had irrono today and it ran in for one hour. His chemo is done for today.

Lee had to run out for lasagna before chemo because that is what Jake was craving earlier today because he watched the new Garfield movie twice today while he was at clinic. Lee said, "After watching Garfield devour plate after plate of lasagna, Jake could not help it he had to have some as well."

Well, so far so good and thanks for all the prayers,

Kim

Tuesday, October 17, 2006 7:39 PM CDT

The chemo has started. We arrived in ATL today around 12:30 and went to Dr. B's office. He was glad to see us but wished it was under different circumstances. We are very fortunate to have not 1 but 2 GREAT doctors. He was very encourageing, like always. We were admitted to the hospital around 3:30 rm 311, at Scotish Rite. We started chemo around 7:00 tonight and if everything goes well, he should finish around 2:00 on Saturday. Jake feels good today and will probably not feel the effects until tomorrow. Chemo is not quick but can linger for weeks. I will update daily as things change. Thanks for all the prayers and support.

Lee

Monday, October 16, 2006 7:32 PM CDT

Lee and Jake are leaving in the morning at 8:00 to head to Atlanta. Jake will have bloodwork and see the Doctor at 1:00. After the Doctor visit Jake will be admitted into the hospital to begin late tomorrow afternoon with chemo. I will be going up on Thursday to swap places with Lee and I will stay the remainder of the week. Lee will update tomorrow and let everyone know how day one went.

Thank you all for the continued prayers we could not get through without them,
Kim

Sunday, October 15, 2006 3:23 PM CDT

HAPPY BIRTHDAY JAKE and LUKE!!!!!!!!!!!!!!!!

The boys had a great time at their birthday party on the beach it was incredibly windy, but that did not slow them down. I will add some new pictures from the day soon.

Kim

Tuesday, October 10, 2006 3:39 PM CDT

We have talked with Nurse Sara from Atlanta and they already have a full schedule on Monday the 16th; so, we will begin Tuesday the 17th and go through Saturday. Jake will have one of the drugs for one hour a day all five days. One of the drugs will go for three consecutive days with 24 hour fluids and the other will only be on Tuesday. We are not sure how Jake will react to these drugs. We have had all three, but not in this combination.

This actually works out great because Jake will feel good this weekend for the last fall baseball tournament for the Thunder. We are also going to get to have a birthday party for the boys with the team which Jake (and Luke) are so excited about. A Birthday party on the beach it does not get much better than that. We are not sure when we will get home for the tournament; so not having to be in Atlanta until 1:00 on Tuesday will give us Monday to recooperate and pack for the week. Those of you who know Jake know that he has to take a television and some kind of game console to entertain himself when he is not sleeping off medication in the hospital. Which Lee or I neither one mind because we usually get free access to the television.

Kim

Monday, October 9, 2006 2:08 PM CDT

Well, Lee has checked his email about a hundred times today. We are waiting for an email from Jake's Atlanta Doctor to finalize all of Jake's chemo plans. Lee called him last Thursday, but he was out of the office and would be back Friday. So, Lee emailed him and we sure were hoping to hear back from him today. One of the worst things about cancer (besides the obvious) is the hurry up and wait that you go through. Hopefully, Dr. Bergsagel will email soon and we can get everything lined up.

Thanks for checking in,
Kim

Thursday, October 5, 2006 1:21 PM CDT

Update:
Lee spoke with Dr. Kushner on the phone late this afternoon. Jake's bone marrow has still tested clear which is very good. The final MIBG results are in and Jake does only have the two spots in his hips. The spots are each in very small clusters. The spots will be able to be radiated if needed.



Well, we have a little bit of news. We are doing one round of chemo for sure. If Jake's body recovers well we will do two. After the second round we will go to NYC for scans. The chemos that have been chosen are cyclophosphamide, irinotecan, and vincristine. Jake has had all of these drugs before, but we are checking to see if we have had them together or not. We are also checking on the start time. We are hoping to start on the 16th because Jake will be the BIG 13 on the 15th of this month.

Keep the prayers coming please,
Kim

Wednesday, October 4, 2006 6:53 PM CDT

I just wanted to give a quick update that we actually have no update at this time.
We did receive an email from Dr. Kushner letting us know that they would make a final decision and he would contact us either later in the day (which he did not) or tomorrow morning.

Thank you all for the kind words and all the phone calls. It is so wonderful to know Jake has so many people praying for him.


Kim

Friday, September 29, 2006 4:52 PM CDT

Well, we have two spots just like we thought. They are both in Jake's hip one on each side. The only type of treatment we have ruled out is radiation and it is only ruled out for the time being. Basically we were told that they wanted to talk about things a little more and wait on the rest of Jake's bm results and a few other tests and then they will make a decision. We are almost 100% certain the first step will be more chemo. It will not be the easy kind either it will be the kind that knocks him down. We have told Jake and he once again takes it all in stride. I think he just sees it as what his life is all about for whatever reason. He really doesn't ask alot of questions he just does what has to be done. He is trully amazing. I am a little worried about how he is going to react about the loss of his hair, but as always we will cross that bridge when it comes.

Thank you for all checking in on us and as soon as we know the gameplan for sure we will post. Please continue to lift Jake up in your prayers. Lee or I have no idea why, but for whatever reason Jake's fight is not over. Please continue to pray for God's absolute healing of this cancer for Jake and all of the trully amazing babies who fight everyday.

We love you all,
Kim and Lee

Thursday, September 28, 2006 1:36 PM CDT

The MIBG results do NOT look good. It appears Jake is once again battleing neuroblastoma. The final results are not in yet, but the preliminary results appear to have cancer in his hip area. I am waiting on a email from Dr. Kushner for a time to meet with him tomorrow. I feel like he will have a gameplan and I will update and let everyone know.


Lee

Thursday, September 21, 2006 9:29 AM CDT

We have Jake's schedule for NYC now. We are flying up on Wednesday, September 27, in the morning. He will get his mibg injection on Wednesday afternoon. His mibg scan will be at 11:00 Thursday morning. He is haveing bm pulls and a ct scan on Thursday also, but the BIG test is this mibg scan. Generally, the scan takes about an hour and I see the monitor the entire time and know where we stand. They do have a doctor that officially reads it and we get a call from Kushner a few days after for the "official" results. But, most of the time we know as soon as the monitor comes on. Kim and I both are going this time. This will be Jake's 9 month check up and I think it is a big one. Kala and Luke are staying in Valdosta. Please pray that Jake's test go well and Kala and Luke stay out of trouble.

Lee

Monday, September 11, 2006 8:28 AM CDT

Well, as you can see from the pictures above I have a house full of monkeys. That is why I chose the Monkey background. I wanted everyone to see Jake's new hair. Sorry the picture is so small no matter how I sized it it keeps putting it on the web at that size. I will have to get some pointers from our friend Sydney's mom in how to get it on the web a little larger. (So, Michelle, when you read this shoot me an email)
I also wanted everyone to see what Kala has been up to, I feel like sometimes people do not realize we even have an older child, but we do and she is great. She is cheering and playing fastpitch softball for the new school she is going to this year she is a Junior this year.

We had a nice weekend almost uneventful except for the water pipe that burst in Jake's room. Luckily we had pulled the carpet our Labor Day weekend and they have not come to tile it yet; so, it was just on concrete. The Lord always seems to take care of us.

Well, have a wonderful week.

Kim

P.S. I have discovered that if you doubleclick the small pictures you can get a somewhat larger view of them.

Wednesday, September 6, 2006 12:53 AM CDT

I just wanted to let everyone know we are going to NYC for scans on Sept. 27th - 29th. This is always a stressful time it seems like I have not even recovered from the last set of scans before it is time to do them all over again. Jake has complained a little of leg pain which also scares us to death, but it could be his way of trying to get out of school. He has come to terms with the fact he has to go, but now he starts in on us everyday when we pick him up about picking him up early the next day. He will badger us from the moment we pick him up until he goes to sleep. You have to admire his presentance (not).
Thank you so much for continuing to check in on Jake and for the prayers that go up on his behalf daily. Please also remember our sweet friend Lana Beth in your prayers.

Love you all,
Kim

Wednesday, August 30, 2006 3:46 PM CDT

Hello Everyone,
Jake is doing great a head full of wavy hair which he loves. We are on the last week of accutane and things are going great. Thank you all for continuing to check in on us and please sign the guestbook.

Love to all,
Kim

Monday, August 21, 2006 9:08 AM CDT

Jake is starting week three of school and the last round of accutane. Lee and I are both have mixed emotions about this. We are glad he will be off accutane because of the emotional side-effects it causes, but this also means we will be making some decisions as to what is next. We will be going to NYC for scans the end of September and the scans will of course help to determine what is next. I wanted to let you know that our friend Lana Beth is feeling better the radiation has helped to ease her pain, but please continue to pray for her body to keep responding to the treatments she is going to be given. Please pray for a cure.


Love you,
Kim

Saturday, August 12, 2006 10:41 PM CDT

Jake survived week one without too much anxiety. Prayfully week two will more of the same. The more weeks he can get under his belt the better it will be for developing a routine and a tolerance for school. He has really never had a chance to adjust to school.
We have not heard anything regarding the vaccine and we have one more two week round of accutane and that his all he can take according to protocol. We have heard rumor that it (the vaccine) is suppose to be available the end of August which would be perfect timing. Please keep up the prayers. Please pray extra hard for our sweet friend Lana Beth she is in a great deal of pain right now. She has started radiation please pray for the radiation to do its job. I have also come in contact with a new family that is at St. Jude and their 10 year old son has just been diagnosed only a week ago. The family is still in such shock, and has already had to start chemo. They are at St. Jude.

Thank you for checking in and please keep praying for that cure.

Kim

Tuesday, August 8, 2006 10:56 AM CDT

Just a quick note Jake is in school. He actually had a nice first day and wasn't too upset about having to go back today. He is really just hanging out there right now; so, will have to see what happens when he has to start doing work. Hopefully, he will be adjusted to the idea of school when that happens. With the type of classes he has he is there for about a week before the real work begins. Well, keep praying.

Thanks,
Kim

Monday, July 31, 2006 10:23 PM CDT

I just wanted to touch base and let everyone know that Jake is doing well. He feels great and is having such a wonderful summer. Which brings me to our family's latest prayer request, SCHOOL. Jake is still saying he is not going to school. I know what you are all thinking you are the adult just tell him he is going. I wish it were that simple. He has unbelievable panic attacks regarding school. I am sure some of it is him knowing how to work his parents, but a lot of it is true fear. We go for open house on Wednesday, please pray for something wonderful to happen so he will want to go. Lee and I would love any suggestions any of you might have.

Love to you all,
Kim

Monday, July 24, 2006 4:06 PM CDT

Hello,
I hope everyone is having a great week. We had a great time at Luke's tournament and we finished 2nd out of 48 teams which is not too bad. The team that won was the team that Luke played for last year and are from Valdosta. So, the South Georgia teams were the buzz of the tournament.
Jake has begun Accutane today which hopefully will go fine. We are just hanging out and waiting for school to begin. Jake says he is not going. (oh boy)

Have a wonderful week and thanks for checking in,
Kim

Wednesday, July 12, 2006 10:09 PM CDT

Hello Everyone,
We are at Luke's World Series this week we have been gone from Valdosta since last Friday. We went to the Braves game Friday Night (they lost) we had a great time. Thank you to a friend of Lee's who gave us the tickets. The seats were 8 rows from the field on the first base line right at the corner of the Braves dugout they were great seats. He also gave us tickets to the 757 club which is a great place to go seat in the air conditioning and have dinner and watch the game inside or out. We went to Chickamauga on Saturday and was able to visit with some old friends it was nice. That evening Luke's ballteam from Valdosta arrived and we had our sports banquet in our old hometown of Chickamauga kind of ironic don't you think? We had such a great time showing all of our new friends where we came from. We all left together on Sunday and made a long train of 16 cars and followed each other to Knoxville, Tennessee where we still are playing a little baseball. We went to the Tennessee Smokies game tonight as a team and one of the boys caught a foul ball (the second one of the night) and he gave that one to Jake and Jake was thrilled to death.
Thank you for continuing to check in and for signing the guest book.
Love to you all,
Kim

Saturday, July 1, 2006 8:53 PM CDT

HOW JAKE SPENT HIS 4TH

New Update July 3, 2006
Dr. Kushner called today and we are officially clean. Thank you Jesus!!!
Thank you for hearing our prayers Lord.





We have received the results from the MIBG and it is CLEAN!!! We have the results to all the other tests except the Bone Marrow and so far everything has come back clean as well. Our God is so good. We are continuing to pray for clean BM results.
Thank you for checking in and for all the prayers for Jake and our family.

Love to you all,
Kim

Thursday, June 29, 2006 9:42 PM CDT

Jake and Lee are back in Valdosta and have made it home safely. Thank you for your prayers for safe travel. The only results we have so far is that the ct scan is clean. We usually have a preliminary of the MIBG, but they were updating the system that allows one area of the hospital to view items from another area; so Kushner will not be able to view the scans until tomorrow. We are hoping for an email tomorrow, but it will more than likely be next week. I will update as soon as I know anything.

Love to you all,
Kim

Wednesday, June 28, 2006 11:19 AM CDT

I just wanted to give a quick update that the boys did arrive safely in NYC. Also, our first praise of the trip the line worked like a charm.

Thank you and keep praying. Bone marrow pulls are today as well at the ct scan. Our schedule is backwards this time which means Jake has to lay on the metal table for mibg scan tomorrow which takes about an hour and a half and it will be painful after bm pulls he will be very sore.

Love you all,
Kim

Monday, June 26, 2006 10:49 AM CDT

I just wanted to let everyone know that Lee and Jake leave tomorrow morning at 6:30a.m. out of Valdosta. Jake does not begin any of his testing until Wednesday and will conclude on Thursday. They did go ahead and have us begin Jake's accutane today they wanted us to continue on schedule. If you will also pray that Jake's port will work when he is hooked up. It has not been used for three months. He is suppose to be hooked up at least once a month and the line flushed out. I have not figured out what went wrong with that plan and how that did not happen, but now I am just praying that the line will work and it will not have to be removed and a new one added. Since Lee and Jake will get there so early tomorrow he is going to go on into clinic and get Jake's line hooked up and see what happens.

Thank you all for your prayers of support.
Love,
Kim

Friday, June 23, 2006 10:52 AM CDT

Wow, two weekends in a row the Miller crew gets to stay home and do nothing. I wish we could always remember how the little things in life make us happy. I do not know why we think we always have to be somewhere all the time.
Jake and Lee will leave Tuesday for NYC I will update again as soon as I know anything. I know I do not even have to say this, but please say lots of extra prayers this weekend and next week. This will be our first set of scans after not doing any chemo for the last three months needless to say we are all nervous. Jake is not showing any signs at all and feels great for some reason that always seems to make me more nervous.

Thank you all for checking in on us and do not forget to sign the guestbook we love hearing from everyone,
Kim

Tuesday, June 20, 2006 3:06 PM CDT

Hello Everyone,
The Miller's had a relaxing weekend at home. We did not have anything going on at all. Jake is feeling great and getting nice and tanned for the summer. He has a pretty good amount of hair and could actually use a little bit of a trim to shape it up, but he will not here of it. I am still recovering from last week. Luke and Jake had friends over from Luke's ballteam and Luke's last years ballteam. I had six boys in my house last week!!! They were great (what wonderful manners), but boy could they eat!!!!!!
This week has been fairly quite not a lot going on. Lee is flying to Nebraska for some meetings. He is so excited because he is getting to go to the College World Series on Thursday, but he just found out that the two teams in the winners bracket will have to lose tomorrow night or there will not be any games at all on Thursday. He is so disappointed; so, now I have to root for my favorite team the North Carolina Tarheels to lose. The things us wives do for our husbands.
Well, I do not want to want to sound to excited but I just may be the next Tiger Woods. Lee and Luke took me golfing on Father's Day and all I can say is Tiger look out. (not!!!!!) I did have a good time though and I only lost two balls; so, all in all I guess I did not do too bad.

Love you all,
Kim

Monday, June 12, 2006 2:58 PM CDT

Well, we had a very exciting, long, and extremely hot weekend on the ballfield with Luke's team. They were in the State Tournament this past weekend and it was 102 on the field. I have raccoon eyes from my sunglasses and I was sitting under the pop-up tent all weekend. Luke's team finished third after two heart-breaking 1 run losses on Sunday the only two losses all weekend. Luke hit three homeruns over the fence and had a very good tournament and Jake was the best batboy out there. Kala was able to also be there cheering on her brother even though on Saturday she and one of the other older sisters stayed at the Hotel by the pool for one of the games. (can't say I blame her very, very hot) Jake had a great time he loves hanging out with all the guys and he got a trophy in the end; so, Jake was happy. Lee and I laugh all the time that he is only in for the trophies and the uniform.
Jake will be heading with Lee to NYC the last week of June, please begin to pray now for clean scans and that the accutane we chose is doing its job.

Thanks for looking in on us and have a great rest of the week,
Kim

Monday, June 5, 2006 9:33 PM CDT

Hi Everyone,
I hope everyone had a wonderful weekend. I do not have much to report, but we are all thankful for that. Jake is doing pretty well on the accutane. His skin is peeling somewhat and his lips look awful, but his mood is not too bad. Thank you so much for continuing to check in on our family.

In Christ,
Kim

Monday, May 29, 2006 4:21 PM CDT

Hello Friends,
Jake began another round of accutane today. The kids are all out of school and I am very glad I love our summers. We love being outside, swimming, and just hanging out. As a matter of fact that is what Jake is doing right now. He is spending the night with a school friend and they are swimming. He is having a great time and that is what summertime is all about. Jake will be going to NYC for scans in about three weeks, Lee will be taking him this time.

Thank you all for your continued prayers,
Kim

Wednesday, May 17, 2006 10:32 AM CDT

Dear Prayer Warriors,
It seems like the Miller request line is never-ending. Jake is doing well, but Lee did speak with our Nurse in NYC and the vaccine we have been waiting on has been delayed again. All of the information regarding the vaccine is at the FDA and they are the ones that are holding things up. Please pray for resolution with the vaccine and that NYC can begin administering it asap. Neuroblastoma is so vicious and if we keep giving it time it will rear it's ugly head again.
In the mean time while we wait Jake will continue with accutane. He can have four more rounds of it and if the vaccine is not ready by then we will have to switch to something else. Four rounds of accutane will carry us until the middle/end of August. Which actually does not sound so bad it would be a very low maintenance summer. However, I just know when we are passive/non-aggressive with neuroblastoma it always seems to come back. Thank you all so much for your constant prayers for our family. I receive peace just knowing Jake is in your prayers and that we are all going to our Lord on his behalf.
I would like to give a bit of really good news Jake is at school. He also went yesterday. Hopefully, he will be able to go these last two weeks, there was some bribing in the Miller household to get him to go.
Thank you all and we love you so much,
Kim

Monday, May 15, 2006 8:18 AM CDT

Jake has completed round 2 of accutane and everything went smoothly with it. We went on a short beach trip to South Florida over the weekend. The weather was great and we had a nice time swimming, sunning, and relaxing. It was a very long drive, but it is always so nice to lay by the ocean for a few days. The beach always seems to rejuvenate Lee and I, which it did. I have a couple pictures that I will hopefully get posted soon.
Maggie, the puppy, is doing much better. Thank you all for your prayers. I know she is just a dog, but dog or not she is still part of the family.

Love,
Kim

Wednesday, May 10, 2006 3:27 PM CDT

Jake continues to do well on the accutane and is just enjoying himself right now. The hair is still coming in strong and he can't be more excited. I told him yesterday he didn't need his hat anymore, but he told not quite yet he needed a little more on the radiation side.
Maggie "the puppy" is holding her on she is eating a little and has been able to keep medication down for two days now.
Congratulations to our friend Canon and his sweet family for another set of clean scans.
Please lift our friend Sydney up in your prayers - she is feeling well, but her anc level is very low and has been for quite awhile. Please pray for her immune system to recover from all the harsh treatment she has had.

PLEASE PRAY FOR OUR FRIEND LANA BETH. LANA IS NOT FEELING WELL AT ALL RIGHT NOW AND SHE NEEDS OUR PRAYERS. SHE IS HAVING ALOT OF PAIN RIGHT NOW AND IS HAVING A HARD TIME EATING AND SLEEPING. PLEASE COVER THE ENTIRE FAMILY IN YOUR PRAYERS.

Thank you and we love you all,
Kim

Friday, May 5, 2006 10:12 PM CDT

Hello to our Prayer Warriors:
I need your help with prayer, our little dog Maggie has taken a turn for the worse. Her liver is not mending and some of her symptons have returned. She is not eating. I know she is just a dog, but she means a lot to our family. If you could just please say a little prayer for her our family would appreciate it very much. If things to not turn around this week Lee and I will have to make that dreadful decision and I do not know if I can handle that I am in tears now.




Hello Friends,
I hope everyone has had a great week. We have had a very eventful week, not with Jake, but with our new puppy Maggie. To make a long story short she ate a Mushroom a week ago Thursday and has been at the vet ever since because it has about killed her liver. She is eating well now and is starting to get her playfulness back, but as of the lab work today her liver enzymes have not recovered at all they are still unbelievablly high. She has gotten to come home the last three nights to stay with us, but has to go back to the vet during the day for iv fluids and special medicine to try and help her liver recover. Unbelievable right? She is going back to the vet to stay Sat. and Sunday because Luke has a baseball tournament in Atlanta, she would normally have gone with us, but it is not worth the risk because she has fought so hard this week to live. It is amazing how quickly our pets become such a part of our lives and how much joy they bring us.
Jake has done very well this week with the accutane. He has started to peel somewhat, but the mood swings have not been bad. He has actually had a very good attitude this week. Thank you all for your prayers this week for Jake as he has been on accutane we have one more week to go.
Please keep our little friend, Canon, and his family in your prayers, he is in NYC having scans this week. He is doing really well and has been clean now for awhile, but they need our prayers because scan time is stressfull. Neuroblastoma is a vicious cancer and can come back at anytime; so please pray for clean scans and a since of peace while they wait on scan results.

Thank you all so much for your prayers, knowing we are covered in prayer from all over is a blessing that our family is so grateful for.

Kim

Friday, April 28, 2006 9:57 PM CDT

Happy Weekend,
It is painting time here at the Miller's. I get the urge every spring to paint something and this weekend it is mine and Lee's bedroom. It is a Kim only project no one else seems to feel the same way I do about painting.
Just to give a little Kala update, she had a good time at the Lowndes Prom. She found out this week that she made the Lowndes High Competitive Cheerleading Squad and she is also already on another competitive squad that is with a gym in Tifton, Georgia. She has her first performance at the Relay for Life in Tifton tonight at 11:00.
Luke is doing well and still playing lots of baseball.
Now for Jake, it is already time to start accutane again come Monday. They are going to increase his dosage just a little from the lower dosage we took at the end last time. They (NYC) are telling us the vaccine is going to be ready anyday now. So please continue to pray that it will happen soon and for its success.

Have a wonderful weekend,
Kim

Friday, April 21, 2006 5:00 PM CDT

Well, Jake is through with round 1 of accutane. It start off fairly rocky, but ended fairly well. We did have to pay a visit to our local Doctor on Tuesday here in Valdosta, Jake had pink eye. We have done daily eye drops since Tuesday morning and all is well now. He, Luke, and Lee have headed to another ball tournament in Statesboro, GA. Kala and I are hanging out here this weekend because she is attending the Lowndes High Prom tomorrow night. Well, I hope everyone has a beautiful weekend.

Talk with you soon,
Kim

Thursday, April 13, 2006 1:29 PM CDT

Well, we did not even get to see the Doctor in Atlanta on Monday and when the Nurse came out to talk with us she asked why we did not handle this over the phone. I told Lee and I had been wandering the same thing all weekend, but we were just trying to do what our Doctors in NYC wanted. We were in a ball tournament with Luke in Atlanta anyway, but we had to drive two cars so Lee, Luke, and Kala could come home on Sunday. We have learned with cancer fighting you just have to go with the flow and try not to get upset when things get somewhat messed up. They have lowered Jake's dose by 100mg a day so far he is tolerating it well. Please pray that this dosage is strong enough to continue to keep his cancer away.

Thanks for checking in and have a wonderful Easter weekend,
Kim

Saturday, April 8, 2006 10:26 PM CDT

What a difference a day makes. Jake started having some serious mood issues with the accutane. He started getting bad on Thursday night, but by Friday afternoon it was terrible. He actually became extremely violent with Luke even if he was not upset with Luke and it was something else that made him mad he would seek out Luke to punch on. Jake is quick-tempered, but this was ten-fold. We called NYC and they informed us that the bloodwork we had done earlier that day had come back borderline elevated. Jake was also having headaches, his face was beet red and he had already starting drying out real bad. With all of those things going on they had us stop the medication and we are having to go see our Doctor in Atlanta on Monday. They feel like he was just having an accutane toximedy, but they want him looked at to make sure that is all it was. Please pray that we will be able to get this worked out; so, he can continue on it and not have to start the chemo back up. He really does want a break from chemo.

Well, thanks for listening love to you all,
Kim

Thursday, April 6, 2006 12:58 AM CDT

Hard to believe they are twins, but I was there. Jake is doing well so far on the accutane. We have started lotioning him up to try to combat the dry skin. He has already started itching from his skin drying out and the hair coming back. He feels great right now and we are praying prayers of thankfulness everyday. The weather has been beautiful this week in Valdosta and we are just taking it easy. The kids are on springbreak, but we have done absolutely nothing (yeah!!!!!!!!). Kala and Luke are a little bummed about not going anywhere, they do get to be gone from home as much as the rest of us (they will get over it). Thank you all for checking in and for the many prayers and kind words it means so much to our whole family.

Love,
Kim

Thursday, March 30, 2006 12:16 AM CST

Decision: Well, the decision has been made. We are stopping chemo for the time being. We are going to begin accutane until the vaccine is ready. Of course pray that this is a wise decision, but there is no looking back. We have prayed about it and feel at peace with this decision. Jake is so excited because this will give his hair a chance to come back. For some reason he has missed it more this time than any other time before. I guess it is the age.




All of the results are in and Jake is still clean of Neuroblastoma. Dr. Kushner has actually given us a choice of treatment while we wait on the vaccine. Lee and I are praying about it and consulting with the Doctors in NYC. We will let you know as soon as we decide. Thank you so much for your prayers for Jake and the rest of our family. I actually have a silent prayer request; so, when you say your prayers for our family please mention the silent one because our Lord knows what it is.

Love,
Kim

Sunday, March 26th 8:24 AM EST

Thank you all for your prayers we had a wonderful flight up and back. Thanks to freqent flyer miles we were also able to take Kala with us. She did not have school Thursday or Friday; so, it worked out wonderfully. It was so nice to have another person there to help out.
We have already received an email from Dr. Kushner and Jake's MIBG scan and CT scan are clear of neuroblastoma. He emailed us last night. Praise to our Heavenly Father. We are still waiting on the BM results; so, please continue to pray. We love you all very much and thank you all for all you do,

Kim

Wednesday, March 8, 2006 10:59 AM CST

Jake is doing GREAT! This past weekend he was bat boy for his brothers travel baseball team. He finished chemo last Friday in Atlanta. The next step is scans in NYC. I set up Jake and Kim for a trip up there on March 23 and 24. They will fly up in the morning and fly back late Friday afternoon. Between now and then Jake will be hanging out in South Georgia being a normal kid. After the scans we will get our "next step". We are still waiting for news on the vaccine program. Thanks to everyone for keeping up with us and praying for Jake's good health.

Lee

Thursday, March 2, 2006 7:35 AM CST

Hello Everyone,
Jake is feeling good this week still eating just fine. As a matter of fact he had his Chinese last night and then pizza two hours later. We have a good time staying with Lee's Brother, Paul, and his wife Jane this week. It is so much nicer staying here than a hotel. Jake loves playing with Neyland there Pug which you can kind of see in the picture above. Jake and I will go to a hotel tonight because we have to be at the clinic so early tomorrow; so, we can get through and get home to Valdosta.
Luke has his first tournament with his travel baseball team this weekend and Jake is the official batboy for the team.
Have a wonderful weekend and enjoy your families.

Love to all,
Kim

Monday, February 27, 2006 9:18 PM CST

Jake has finished day one of chemo. Jake and I are back in Atlanta already doing the chemo thing again. Jake is feeling good. I wish I could say the rest of the Miller gang was feeling well. It was a very long drive up to Atlanta today, but we made it. I am praying for a very uneventful week and then we will head back to Valdosta. Thank you all so much for continuing to check in with us.

Love to you all,
Kim

Saturday, February 18, 2006 7:50 PM CST

Finally a picture of the newest member of our family, Stone. I have placed another picture of Stone in our photo album. Jake is doing well the cold is better. The kids are out of school Monday and Tuesday so we are going to take it easy and get everything ready to go back to Atlanta week after next. Please keep our friend Sydney and her family in your prayers she goes for scans next week in NYC that is always a stressful time on the family.


Have a great week,
Kim


Jake wanted to let his buddies know he has a new email address and it is jakemiller1993@yahoo.com

Saturday, February 18, 2006 7:50 PM CST

Finally a picture of the newest member of our family, Stone. I have placed another picture of Stone in our photo album. Jake is doing well the cold is better. The kids are out of school Monday and Tuesday so we are going to take it easy and get everything ready to go back to Atlanta week after next. Please keep our friend Sydney and her family in your prayers she goes for scans next week in NYC that is always a stressful time on the family.


Have a great week,
Kim

Tuesday, February 14, 2006 7:10 PM CST

Happy Valentine's Day!!!
Jake is still fighting off the cold he came down with last week. Please pray for no fever to develop as his counts drop this week from the chemo we had last week. We still do not have any idea when the vaccine is going to be ready; so, we are continuing on the two weeks off and then a week of chemo. Jake and I are getting very frustrated with the plan. We are trying real hard not to complain because we are both fully aware that it could be alot worse.
Sorry I have not posted baby pictures yet just being a little slow I guess.

Happy Valentine's Day,
Kim

Thursday, February 9, 2006 12:56 AM CST

Jake is doing well this week and it looks like we will be continuing this type of treatment for awhile. They do not seem to have an idea as to when the vaccine is going to be approved.
We have a beautiful new baby boy 8lbs 3oz mom and baby Stone are doing well. His full name is Aiden Stone. I will post some pictures as soon as we get home.

Thanks for continuing to check in.
Kim

Tuesday, February 7, 2006 3:33 PM CST

We are done with day two of chemo. Jake is doing well so far. We are still anxiously awaiting the arrival of our new baby cousin. She has been in labor since 1:00 a.m. Thursday and they are expecting the birth to be around 8:00 or 9:00 tonight.
Well, thanks for checking in and Lauren so sorry we missed you.

Kim

Thursday, February 2, 2006 7:43 AM CST

Jake is doing well at school actually better than we anticipated. His anxiety has slowed down a great deal. He is still only going half-days and has no desire to go all day, but at least it is a start.
Jake and I leave next week for another round of chemo. We are going to have a busy week because on Tuesday my cousin goes in the hospital to have her first baby a little boy. We are all so excited we can hardly wait. Jake and I are going to drive to Chattanooga on Wednesday after treatment to take all kinds of pictures of the new baby which of course I will post.
Luke and Kala are doing well both of which will be starting up their competitive sports in the next month or so. We are going to be very busy in the Miller household, but what is new. I wouldn't have any other way I don't know what I would do with myself anyway.
Thank you for continuing to check-in on us. We love you and appreciate you all so very much.

Have a wonderful day,
Kim

Monday, January 30, 2006 11:05 AM CST

Things are moving right along at the Miller house. Jake has started back to school going half-days. He is not real thrilled, but it is a start. Of course it will be short lived because we are suppose to start chemo again next week. I will be emailing the Doctors in NYC to make sure that is still the plan before we head back up there. Well, thank you for continuing to check-in and for always remembering our family in your prayers.

I will update soon,
Kim

Tuesday, January 24, 2006 7:43 PM CST

Jake is home.YEAH! He has had some post chemo "issues", but they have been manageable. He is spending his time off at the bookstore. He has a teacher that comes out 2 times a week and works with him. This has been a wonderful blessing. He has zero desire to return to school, so this is his only school work. Hopefully when he completes this low dose chemo this spring he will return to a regular format. Jake continues to eat well and his hair is starting to grow back. I will be glad to get back to a normal routine some day. Thanks to everyone for the continued prayer and love.

Lee

Wednesday, January 18, 2006 11:57 AM CST

Jake and I are in Atlanta about to begin day 2 of his chemo treatment. He did wake up this morning feeling somewhat quizzy. It has not been unbearable, but he has had enough sickness that I am going to ask for a little something to take home with us for tomorrow morning.
He is watching a movie right now on his own personal television that is on an adjustable arm; so, he can position it anyway he likes as he sits in his on recliner. We told them we had come back to get a little pampering here in Atlanta. New York is wonderful and we are thankful to be there, but it is very crowded there when you go for treatment.

Well, that is a brief update about where Jake is at and what is going on. (not much, but that is a good thing)

Love to everyone,
Kim

Tuesday, January 10, 2006 8:01 PM CST

Jake is doing great! All of his test are back and there is NO CANCER in his body!!! This is the third time in 4 years we have "cleaned" him up. Hopefully the third time is the charm. The plan for now is to go to Atlanta for 5 days of low dose chemo. This normally does not wreck his body and he can handle it fairly well. Kim and Jake will head up there on Tuesday and be done on Saturday. He will be home for 2 weeks and return and do it again. The doctors are putting him in a "holding pattern" waiting on the vaccine in NYC to recieve FDA approval for use. Unfortunatly there will only be a few kids in this new treatment. Right now we are eligible for it and hopefully when it is approved we will be still ready.

Lee

Thursday, January 5, 2006 3:48 PM CST

We have been given a miracle!!!! Jake's MIBG scan is clean. They never expected Jake's scan to be clean this soon. Dr. Kushner was absolutely thrilled to say the least. Lee and I are shouting PRAISES to our LORD.
We also want to thank you all for your faithfulness in prayer for Jake. Isn't it a wonderful blessing when prayers are answered.
We are still waiting for the results of his bone marrow pulls which we will not have until next week sometime. We also know we still have a long road ahead to try to keep this beast out of Jake's body, but we do want to rejoice and be thankful for this gift of current healing that we have been given.

Lee and Jake will be boarding a plane shortly to head back to Valdosta; so, pray for safe travel. Lee and the boys will be leaving Friday afternoon for a short trip to DisneyWorld with the Ronald House of NYC. I am not going to be able to go because we are open this weekend VSU classes start on Monday; so, we are busy, busy, and busy some more.

Now our next challenge is to figure out how to get Jake back in school.

We will be doing two more rounds of mild chemo while we wait for final approval on the new vaccine that Sloan-Kettering has developed. We are talking with our Doctor's in Atlanta because we going to try to do these two rounds there instead of in NYC. We will go back in two months for more scans and hopefully we will then begin the vaccine.

Love,
Kim

Wednesday, January 4, 2006 8:53 AM CST

THEY MADE IT!!!!!!!!!!!!!
Thank you all so much for your prayers.
Of course, this morning has been totally hectic and they have added a test to Jake's schedule. They have added an MRI which we have never done up there; so, I am a little un-nerved as to why. I will update as info comes in.

Thank you all,
Kim

Tuesday, January 3, 2006 6:38 PM CST

PRAYER ALERT!!!!!!!

If you are reading this please stop and pray Lee and Jake are in Atlanta, but the flight that was suppose to leave at 7:00 has been postponed until 8:30 and now 9:05. They desperately need to leave tonight because scans begin at 8:20 tomorrow morning. Right now things are not looking good; so, please pray for them to get on a flight and get to NYC safely tonight.

Kim

Sunday, January 1, 2006 5:35 PM CST

Happy New Year!!
Lee and Jake will leave for NYC on Tuesday evening and will return Thursday night. Please pray for safe travels there and back. Please pray for good scans and for wisdom in the choices we will have to make for future treatments options. Also, please pray that we will have options.

Thank you all for all of the support during 2005. Our family could not get through this without any of you and we love and thank you so very much.

God bless you all,
Kim

Tuesday, December 27, 2005 9:25 PM CST

I hope everyone had a wonderful Christmas. I have been enjoying my time off. The bookstore is closed this whole week. I have been able to get somethings accomplished in the house that I have neglected for quite awhile.
I am starting to get extremely nervous about Jake's upcoming scans. I know God is in control and I also know there are many people praying for Jake, but the human in me is scared. I am praying daily for faith and assurance that my God is in control. Please join me in prayer for Jake and the rest of the children and their families.

In Christ,
Kim

Sunday, December 25, 2005 11:35 PM CST

What a wonderful Christmas Day. The kids had a wonderful morning opening gifts. We then enjoyed a wonderful Christmas Service at Church. The kids spent all afternoon just enjoying the day. Lee's mom, brother, and sister-in-law came down this evening and are spending the night with us. We have had a wonderful time laughing and enjoying each other's company since we hardly every see each other anymore. I pray that everyone has had a wonderful day with family and friends. Merry Christmas to all and to all a good night.

Kim

Wednesday, December 21, 2005 11:01 AM CST

Merry Christmas! Jake is feeling great and ready for Christmas day. Jake, Luke and myself were invited to a plantation in South Carolina to hunt with some friends this past weekend. We had a great time. Jake is relaxing and enjoying being at home for a while. We head back to NYC the first week of January. I will post some Christmas pictures next week.

Lee

Thursday, December 15, 2005 8:00 AM CST

I hope everyone is enjoying the season. I am sure everyone is busy, just like here. Jake is feeling great no complaints at all. Luke is playing basketball for the Middle School and their last game before the Christmas Break is today. He is going to a Baseball camp for three days next week. The child is ate up. Kala is going to chearleading and tumbling classes twice a week, but she drives herself now. (what a blessing) She will be thankful for the Christmas break because her teachers have really loaded them up this week in addition to finals being today and tomorrow. She is exhausted and is looking forward to some rest. Lee and I are good, both very busy with work and the Holidays.
A wonderful man is taking Lee, Luke, and Jake on a special hunting trip this weekend. The boys are so excited they can hardly wait. They are already packed and ready to go. They will be leaving late Friday and returning on Sunday late afternoon. Please pray for a safe journey.

God Bless and Merry Christmas,
Kim

Thursday, December 8, 2005 10:49 AM CST

Wow, I am so sorry I just realized that I had not updated the site. WE ARE HOME SWEET HOME!!!!!

Jake is feeling fine just getting ready for Christmas. We have been putting up more trees around the house, Jake has a live tree in his room. All he wanted on it was colored lights; so, that what he has.

The new picture is our 2005 Christmas photo. Merry Christmas to all, we love you, and thank you so much for all of your prayers.

Love,
Kim, Lee, Kala, Luke, & Jake

Thursday, December 1, 2005 8:15 PM CST

We had a great time at The Lion King show we had great seats. We were only 10 to 15 rows from the stage; so, Jake was able to see very well.
He is still dealing with just a little bit of sickness everyday, but we are able to control it with medicine. Please remember our friend Lana Beth from Chattanooga, TN, she is having to go through the treatment called I.C.E. that Jake went through back a few months ago that made him so very, very sick. Well, Lana is having the same reaction is a very sick little girl right now. She needs our prayers very much along with her family. Pray for her to have a spendy recovery and for the chemo to do its job.

Love you all,
Kim

Wednesday, November 30, 2005 11:05 AM CST

Jake and I are very excited we finally made it on the list to see the Lion King. We will be going with a group from the Ronald House today at 1:00. Jake has had a little bit of sickness, but not too bad. We have two days left of treatment. His white cells are dropping a little so he is more than likely going to need a shot to help boost them. We will know for sure on Friday. The rest of his counts are pretty good. I am getting my flu shot tomorrow at the hospital to help try and protect him during this season and with all the travel we are having to do makes us even more at risk. Jake cannot have a flu shot because it would not do any good because of his suppressed immune system. Hopefully, Lee, Kala, and Luke will get theirs in Valdosta. We may have to drug Luke in advance he has a slight (huge) fear of needles. Just another sign that God is in control because if Luke had gotten cancer lets just say "oh man"!
Please keep praying for a cure.
Love,
Kim

Monday, November 28, 2005 2:10 PM CST

Well, we finally made it two hours late, but we're here. The flight out of Valdosta was the worst flight I have ever been on. I was so thankful that it was only 40 minutes. The fog was so bad you could not even see the wing of the plane. Needless to say it was a very choppy flight. When the flight attendant gets you to give the pilot a round of applause when you land you know it is rough. Jake, of course, slept through the whole thing.
We are trying to get started here, but we have to wait on his chemo to be made. On Monday's they cannot make the chemo until he has blood work to make sure his counts are good enough to have chemo. Hopefully it will not take too long we are getting hungry.

Thank you for your prayers for a safe flight because that is what helped us to make it,
Kim

Sunday, November 27, 2005 5:34 PM CST

Well, our holiday is over and it's back to work. Jake and I leave at 6:00a.m. tomorrow morning out of Valdosta. Thankfully, we only have to be there for four nights we are returning on Friday. Jake has had a great time at home and is not exactly thrilled about going back to NYC.
Thank you for your prayers and all of your support we love you all very much.

Love to all,
Kim

Monday, November 21, 2005 8:59 AM CST

We are home. It is so good to be home. Jake and arrived Friday evening around 8:30 p.m. we have had a wonderful weekend. I am back at work today trying to get many things accomplished before Jake and I fly back out on Monday week. Jake is feeling good and very thrilled to be back in his own room. Thank you all for the huge amount of support while we were in NYC for that long haul.

Have a wonderful Thanksgiving and remember to be thankful.

Love to all,
Kim

Tuesday, November 15, 2005 11:18 AM CST

Day two of week three is over. We have three days remaining, tomorrow Jake is having double radiation so we will stay on schedule and get to leave on Friday. Our flight leaves at 1:00 on Friday and we will be back in Valdosta around 7:30. If we stay on schedule we are meeting the rest of the Miller's at the Lowndes Football Playoff game.
We found out yesterday that we will be returning the week after Thanksgiving for one more round of chemo (low dose). We will come up on Monday morning and leave Friday afternoon. Jake will then have the rest of December off. We will return for two days after New Years for scans and hopefully will begin the Vaccine program after that.

Jake and I are very ready to come home and a little sad that we will be returning so soon, but we are ready to end this war so one more battle will be fine.

Love to all and thank you again for all of your love and support,
Kim

Sunday, November 13, 2005 9:25 PM CST

Yeah, week three is about to begin. Jake and I are counting the minutes until Friday. Jake's week of chemo and radiation went well he did not have any big problems. This week we have only radiation and blood work. Please pray for counts to remain high; so, he is not in even more jeapardy of getting a fever which would put us in the hospital. His counts did really well last time we had this type of chemo, but this time he had radiation with the chemo which could cause his counts to drop more that last time.
Thank you all for checking in on us and for the cards and notes we have received.

Love to all,
Kim

Thursday, November 10, 2005 12:11 AM CST

Jake is feeling good. He is actually having pancakes for lunch as I am typing this. There is not alot going on at the house this week; so, I am in trying to find something to entertain Jake with. They are trying to get him tickets to the premiere of the New Harry Potter movie, but I have not told him because it is not looking good. Maybe we will get lucky because I think that is something he would really enjoy.

Well, that is all for now. Thank you for your prayers.

Love to all,
Kim

Tuesday, November 8, 2005 11:13 AM CST

We are on day 2 of chemo and day 6 of radiation so far so good. Jake is feeling good and having a great time hanging out with friends when he gets back to the Ronald House in the afternoons. I had to go look for him last night because he was having such a good time he had not come back to the room and it was getting late. We have had a wonderful time hanging out with our friends from Florida they go home this afternoon Jake and I both will be sad this evening. We do want to give God our thanks today Sydney which is the little girl that has neuroblastoma that belongs to our friends in Florida had wonderful scan results and is doing great.
Please continue your prayers for Jake and the rest of the children who are fighting along with Jake.

Love you all and thanks for the wonderful words of encouragement,
Kim

Sunday, November 6, 2005 1:19 PM CST

We have had a wonderful time at the Marathon who knew watching people run could be so much fun. We are a little sad because our friend Rich told us he would be by around 3:00; so, we left for lunch and of course we missed him. We did see Kevin and Jake's Doctor.
Jake will begin week two of radiation and his second round of low dose chemo tomorrow.
Thank you so much for your continued concern and prayers love to you all,
Kim

Thursday, November 3, 2005 2:12 PM CST

Hello to everyone,
There is not alot happening here right now. The NYC Marathon is Sunday and we know three people who are running it. Jake has promised to hand out Gatorade to our very good friend Rich whom we know here from the Ronald House. Jake's Doctor is also running and one of the dad's we met here from the house.
Jake is feeling good we went and saw Zorro last night. He loved it. Lots of action for him to watch without the blood and guts for mom to watch. (Antonio was not so bad either).
Well, Jake is awaiting our friends from Florida who are due in sometime today. They coming up for scans and the dad is the one I was telling you about who is running in the marathon. Unfortunately they will not be here very long, but Jake will have fun hanging out with Drew for a few days.

Love to all,
Kim

Tuesday, November 1, 2005 11:21 AM CST

Jake and I are here in NYC on day 2. We had our first day of radiation just a little while ago. We did not have radiation yesterday it was more of simulation. We are here in the clinic waiting on bloodwork and to see a nurse for a routine checkup.
Thank you so much to Mrs. Wilson and the rest of Jake's class we received the care packages last night. He loved getting the mail.

Thanks for all of the kind words and prayers we love you all,
Kim

Thursday, October 27, 2005 3:35 PM CDT

We do not have anything new to report. Jake and I are enjoying being home. I have been very busy at the bookstore trying to get very organized and ahead of the game with some things. Jake and I are flying out of Valdosta Monday morning at 6:00a.m. Please say an extra prayer that we do not get a call at 3:00a.m. saying our flight as been cancelled or we've been bumped. The last two times we have had a flight out of Valdosta that has happened. We have not flown out of Valdosta in a few months; so, I am hoping things are better. Please continue to keep Jake in your prayers as well as all of the children fighting cancer. We love you all and are so grateful to have dear friends.

Love to all,
Kim

Tuesday, October 25, 2005 12:46 AM CDT

Jake and I made it home late last night for a brief but much needed stay at home. I need to get some warmer clothes. We had blood work done this morning, but I have not heard any results as of yet. Jake feels pretty good. We are both off our schedules we are have been staying up very late at the Ronald House and sleeping in in the mornings. We are both a little tired today, but we will bounce back quickly. Thank you all for signing the guest book we appreciate the notes so very much. Also, thanks for passing jakehats.com to your friends.

Love to all,
Kim

Monday, October 24, 2005 3:55 PM CDT

Jake and Kim are on their way home! They met with the radiologist today and he will need 3 weeks of treatments. The treatments will begin next Monday October 31st. That will be tough, but at least they will be home for a few days. I am going to try and fly them back on the weekends during his 3 week stay. Or I may fly up to them some. We are going to sit down and work it all out over the next couple of days. Please pass along www.jakehats.com to everyone you know.

Thanks-Lee

Saturday, October 22, 2005 5:25 PM CDT

Well, I have been wanting some cooler temperatures. Be careful what you wish for. It is 49 and raining here in NYC today. I talked with Lee and they are playing baseball and burning up today. Jake and I went to the circus with the Ronald House today. Jake loved the dog act (they were really good). There is a great kid who is 14 or 15 that just started volunteering his Saturday mornings here at the Ronald House. Jake is having such a good time with him along with some of the other guys the boy has decided to stay all day and attend the World Series Party tonight. This is the first day that Jake has pretty much spent the day out of the room. I have not seen him all afternoon, but this is allowing me to get the television. I am able to watch the Tennessee-Alabama football game.
Jake and I will be meeting with the Radiologist Monday at 9:00 and she will let us know how long we will be here. What she tells us will determine if we are going to be here for 1 or 3 more weeks.
Thank you all for the notes on the webpage. Jake and I both appreciate them very much. Thank you for the prayers and we just ask that you keep them coming.

Love to all,
Kim

Wednesday, October 19, 2005 6:33 PM CDT

Jake and I have returned from the dining room to our room to wait up here for dinner to arrive. An Italian restaurant that is a house favorite is feeding everyone tonight and they are running behind. It is weird being here we donot know anyone. All of the wonderful families we became friends with are not here. The house is very lonely without them. There are some very nice families here now, but none of them seem to have children Jake's age they are either much younger or much older children. Unfortunately, I am not near as outgoing as Lee is at going up to total strangers and striking up a conversation. I did meet a family from Ohio today who heard me tell our Nurse where we are from and they shouted out we know someone from Valdosta. We had a nice conversation with them for about thirty minutes there son is a senior in High School. They know the man who is the new Valdosta State Basketball Coach (small world huh?).

We are done with three days of chemo and Jake feels fine. He is eating very well. I think we may go to the circus with the Ronald House on Saturday. We have not totally made our minds up, but we are pretty sure. Thank you to everyone for signing the guest book it gives us both something to look forward too.

Love to all,
Kim

Monday, October 17, 2005 9:03 PM CDT

New Update: Day 2 is over. He was a little nausea today, but not bad. As you can see from the picture above he felt well enough to go to Central Park Zoo today.
Day 1 is over. When you are fighting cancer you have to be strong, patient, determined, and flexible. There are many other things that you need to be succesful at cancer fighting, but these come to mind after today. Jake has done many types of treatment, and has endured them all. Today was a brand new day in his fight against cancer. I will call today "Hallway Chemo". When we first started chemo Kim and I wore rubber gloves, and I would watch the clock and count down the pumps. Today in NYC Jake took 6 pills, was hooked to a pump-pole for only 1 hour and then jumped in a cab and went to ToysRus. How wild! No private room, no clinic recliner, it was so crazy and crowded they hooked him up in the hallway and that was it. It is amazing that this toxic chemo is administered this way. It goes to show you how far cancer fighting has come. I can not imagine giving a pediatric cancer patient some pills and setting up in a hallway 5 years ago. What will it be like in 5 more? Maybe it will get to the point where they can mail the chemo to us and we can do it from the comfort of our home. Jake has had his share of "behind closed door treatments", maybe it is time for an easier go at it. I don't care if they give it to him in Chocolate milk, as long as it WORKS! Today was a good day. We will be grateful for it and hope for some more of the same the rest of the week. Thanks to everyone for all the prayer and love.

Lee

Thursday, October 13, 2005 1:43 PM CDT

Guess what? Plans have changed. Jake and I are still leaving for NYC on Sunday, but instead of being there for one week it will two - three weeks. Please pray for my state of mind I have been there for two weeks before, but never longer than that. I am very much a homebody; so, this is not going to be easy. Jake will be fine as long as he has his games to play. The week days are not too bad because you have all that is going on at the hospital to help pass the time. The weekends are very slow and very lonely. Jake's treatment this time is not going to be hard on him (so they say); so, I will have a hard time entertaining him without going to the poor house. Hopefully, the Ronald House will have some things going on to entertain us both (like massages ha! ha!).
Thank you for all of the kind words and please sign the guest book over the next couple of weeks it is so encouraging to here from everyone.

Love,
Kim

Monday, October 10, 2005 10:29 PM CDT

I had a conversation with Dr. Kushner today. It looks like we are going to be buying some time. Jake feels great and is going to school and playing baseball. His test show some improvement. Jake and Luke are turning 12 on Saturday. We are going to have a quick trip to Disney and celebrate their birthdays. Jake and Kim are flying to NYC on Sunday to start a low dose chemo round on Monday. They will return on Friday. They will return to NYC in two weeks and do a 2nd round of low dose chemo and 2 weeks of radiation therapy. Then, if all goes well they will return in December and retest everything. The long term plan is to get Jake into a vaccine program the first of next year.It seems like the plan is constantly changeing, but that is part of it. I will keep everyone updated as things change. Please pass along the Jakehats.com web sight to help offset the cost of plane tickects.

Thanks,

Lee

Thursday, October 6, 2005 11:25 AM CDT

We just received Jake's 24 hour heart monitor test. I really have no idea what it is telling me. If it was an MIBG scan I could read it, but all of this heart stuff is new to me. All of the Doctors in NYC meet on Thursday nights to discuss different situations and Jake is on the agenda for tonight; so, we may be heading to NYC on Sunday after all. All we can do is wait and see.

Tonight is party night. Kala is Sweet 16 today. She will be going for her driving test tomorrow. I have mixed emotions about that, glad she will be able to run herself everywhere she has to be. But, terrified of her being behind the wheel.

Thank you and we will update as soon as we know something,
Kim

Monday, October 3, 2005 11:41 AM CDT

From first reports Jake's scans are looking better. All of the spots are still there, but better. We are waiting on a call from the Doctor in NYC to go over the test results and get a plan for what is coming next. They did detect a rapid heartbeat in Jake that they think is stemed from his WPW Syndrome (which we knew about), but he had not been showing any signs of a problem. He is going to wear a heart monitor for 24 hours to see what his heart is doing during an extended period of time. We are going to be able to do that here in Valdosta one day this week. Thank you for your support and prayers,
Kim

Wednesday, September 28, 2005 9:28 PM CDT

I just spoke with Kim and they are back in Jacksonville. All of Jake's test went well. The doctors were pleased with the way Jake looks. If it was not for this liitle cancer problem he would be in great shape. Now the waiting game begins. It will be Friday or Monday before we hear from NYC. It looks like Kim and Jake will be returning on Monday October the 9th. They could be there for 2 or 4 weeks. The scans he just did will have to be read first and then we will know. We will prepare for 4 and hope for 2. But, all of that could change as many of you know. Cancer fighting is difficult to plan for, sometimes it changes quickly. I will keep everyone updated as things happen.

Lee

Monday, September 26, 2005 9:05 AM CDT

Please pray for travel mercies and beautiful scans. We leave today for NYC. We will be leaving out of Jacksonville, Fl today around 5:00p.m. We will arrive in NYC around 7:30 and will be returning Wednesday afternoon around 3:30.
We will update as soon as we know what our next steps are. Pray, pray, pray, for clean test results. Through Christ all things are possible.

Love to all,
Kim

Friday, September 23, 2005 7:57 AM CDT

Jake had his first baseball game last night, what joy Lee and I had watching him. He was very excited he had such a good time. A bunch of boys from the team went out to dinner afterwards to celebrate. Jake is so excited he had to wear his jersey to school today. He did not complain about going to school at all today; so, maybe I shouuld get him a new jersey everyday! Ha! Ha!
Jake and I will leave for NYC on Monday afternoon for scans that we will have on Tuesday and Wednesday it will be a worldwind of a trip.
Please keep Lana Beth and Sydney in your prayers.

Kim

Wednesday, September 21, 2005 9:12 AM CDT

Jake went to school yesterday and had a pretty good day. Lee's job is going well and he is looking forward to the new challenge. Jake is looking pretty pale so we had blood work done this morning, but we do not have the results as of yet.

Please pray, pray, pray for two different young girls fighting neuroblastoma one is having some severe pain and the other is experiencing low counts for no apparent reason. Their names are Lana Beth and Sydney. They are two very special little girls whom we love as well as their families. Please pray for miraculous healing and strenght for the families.

Thank you because I know prayers are going out all over for these two young ladies.

Kim

Monday, September 19, 2005 12:21 AM CDT

Well, Jake is going to school for another week and he is not happy about it. I was thinking about why he does not like school besides the academic part, you would think he would want to go and visit with his friends. School is so structured now that he does not have anytime to visit. In his elementary school career he has only been able to go to school his kindergarten and 2nd grade year. All of the other years have been interupted with treatment of some kind or another. I guess you could say he is very much out of the habit of going to school. Please be in prayer for Lee and I as we try to decide what to do for him he is starting to have anxiety attacks toward school.
Lee was able to start his new job today. I have not talked with him since he left, but I am sure all is going well. He was having orientation today.

Thank you for your prayers and support. If anyone has any suggestions how to help Jake with school, please SHOUT them out to us.

Kim

Tuesday, September 13, 2005 7:29 AM CDT

Wow, it has been awhile since we updated last. Lee's surgery went well. He is at home, but so far he has been a good patient. Jake is back at school, but he is not happy about it to say the least. He is out of the habit and he struggles so much with academics that he finds it like torture to go. Please pray for Lee and I to find the right answer for Jake and school because our nerves cannot seem to take what he is putting us through everynight.
Jake and I will leave for NYC on the 26th for scans and if all goes well we will go back to NYC on October 9th for two weeks of antibodies.
Hello, to Robin and Cody, boy how Jake misses you.

Love to all,
Kim

Sunday, September 4, 2005 7:03 PM CDT

Jake is still feeling well. We have had platelet transfusions on Thursday and today. He has not had to have a whole blood transfusion as of yet and it has actually rose a little since yesterday. As long as he does not develop fever he is off from hospitals until Tuesday when he will go back for labs again.
We have been fall cleaning around the Miller household all weekend which makes mama happy. Kala and I did her room tonight and the boys will be tomorrow. (they have been so excited)
We are all going to enjoy our day off tomorrow and are very thankful we are all here together. We will know on Tuesday when we are headed back to NYC. It is looking like it could possibly be around September 20th and we will be there for a couple of weeks. It will be Jake and I going because Lee will be starting his new job. Oh yeah, I forgot to mention be in prayer for Lee he will be having surgery on September 12th.

Thank you for your love and support,
Kim

Wednesday, August 31, 2005 9:08 AM CDT

Jake is still feeling good. We had labs drawn yesterday and his white cells pretty much do not exist. He will more than likely need platelets tomorrow, but his hemaglobin is holding on for now. It too will drop that is just the nature of the beast. Hopefully, we will be able to get everything is going to need on the same day instead of having to go to the hospital everyday this week. We have not developed fever as of yet, we have not escaped it after either of the other two rounds so he is due. We are definetly keeping a low profile.
Lee has been offered a job which will start on September 12th; so, please keep that in your prayers as well.

Thank you for all of your support and prayers. We love you all and could not do this without you.

Kim

Saturday, August 27, 2005 9:38 AM CDT

Jake is at home. He and Lee arrived home around 5:00 on Friday. He is still having episodes of vomiting, but he seems in good spirits. He is very glad to be home (so is Lee). Jake and I are just hanging out at the house today taking it easy. Lee has gone with Luke he is in another ball tournament this weekend in Bainbridge GA. Kala also had a High School fastpitch game in Houston County around Macon GA. Mom and Dad went with her.
Jake and I are watching the weather channel to see what Miss Katrina is going to do. It appears that she is going to miss Valdosta, but be in prayer for the area she is going to hit. We are quite a bit inland, but the wind can really blow here when one comes our way; so, I cannot even imagine how powerful the winds are on the coast. Have a great weekend and thank you all for your prayers and words of encouragement you send our way.

Love to all,
Kim

Thursday, August 25, 2005 1:52 PM CDT

Round 3 of I.C.E. chemo is OVER! Jake is resting. He had a long night last night. He will get 24hrs of hydration and vomiting meds and we will get to go home tomorrow. I am sending his last mibg scan to a radiologist here in Atlanta for review. We will probably have to come back up in the next couple of weeks and do some radiation. We will head back to NYC in the end of September or the first of October and redo all the test. Depending on the results, our next treatment plan will be decided.

Lee and Jake

Tuesday, August 23, 2005 9:27 AM CDT

2 days down 3 to go! This has been a wierd cycle. Jake became sick on day 1, and usually it is day 3 before he gets sick. His appetite is still good, he has been in good spirits also. We are waiting on a consult from a radiologist. I am hopeing to get that scheduled for middle of September. Jake is ready to go home. I hope to run out of here on Friday. I will keep everyone up to date. Thank you for checking on us.

Lee and Jake

Monday, August 22, 2005 7:31 AM CDT

Jake began chemo yesterday and so did the sickness. There first night was a long one. This is going to be a long week because the last two times the sickness did not begin until day three of chemo. This time it has began on day one. Please pray for Jake and Lee for the strength to get through the week. (and for sleep)

Love to all,
Kim

Friday, August 19, 2005 7:51 AM CDT

Sorry for the delay in updates. Classes began Monday the 15th at VSU and the bookstore has been a madhouse. Jake, Luke, and myself are all battling a cold/allergies. The boys came down with it first and have given it to me (aren't they precious).
Jake and Lee are leaving for Atlanta on Sunday and are going to start chemo Sunday evening. Jake is ready to get it over with.

We will keep you updated as the week progresses.

Love to all,
Kim

Wednesday, August 10, 2005 8:10 AM CDT

Jake is at school and is going to have two full weeks of being a normal fifth grader. He seems to be enjoying his new year at school very well. There are a few things that are stressing him out, but on the whole it is not too bad.
We received an email that Jake is no longer HAMA positive which means he is now eligible to receive antibodies treatment again. We will still do the next round of chemo, radiation, and rescan. Then we will make a decision about what will be done next. Thank you so much for the prayers and support.

Love to all,
Kim

Friday, August 5, 2005 2:53 PM CDT

Thank you for your prayers for Jake and our whole family. Jake's MIBG scan has improved even more, the cancer is being defeated. Jake's Doctor in NYC was absolutely amazed by Jake there is no MEDICAL reason why his counts are as good as they are. His liver and kidney function is perfect. Lee said, "Dr. Kushner was beyond amazed and thrilled." What this means for Jake's future is another round of high dose chemo; so, please start praying now for another remarkable count bounce back. We were told that there would be no way to do another round of the ICE chemo, but because he has come through so astounding we are doing it again. We do not want to let up on the cancer. Our prayer is that this high dose chemo continues to work without jeopardizing Jake's body in anyway because everytime we do this there is a high risk involved. They are also going to do radiation on the three spots in Jake's leg and one spot under his collarbone. We will be doing all of this in Atlanta starting the week after our big book rush at the store. This will have Jake starting on August 22nd; so, he will be able to go to school for two full weeks.

Please continue to pray and thank you so much for all of the prayers that have gone up on behalf of Jake. We love you all and cannot thank you enough for your support.

Love to all,
Kim

Thursday, August 4, 2005 10:58 AM CDT

Lee and Jake have arrived in NYC not after much trouble. We received a phone call again last night (not in the wee hours of the morning like last time) that their flight had been cancelled and they were on a later flight. Well, we did not allow for a lot of extra time to get their for scans because Jake is having all of his work up done in two days today and tomorrow. Lee had to change his flight to go out of Jacksonville instead of Valdosta. Jacksonville is 1 1/2 hours from here and the flight was at 6:00a.m. The Delta people decided that Jake was a security threat and ramdomly chose him in advance to go to a special room for a security check. Therefore, when he got to Jacksonville only 30 minutes before their flight was to leave the ticket agent told him he would have to reschedule because the security check that Jake was chosen for was a minimum one hour wait. Lee tried to explain to them how much trouble they had caused because the cancellation had nothing to do with weather, it was all them. He showed them Jake and how he was not a security threat, but they did not seem to care. So now they were on stand by for an 8:30 departure with no guarantees to get a sit. When they go to the security check the man looks at Lee and asked how old Jake was, when Lee told him 11 he just said he was sorry they had to go through that and sent them on their way. It took a total of five minutes in the security check. Please do not get me wrong I am thankful they are so cautious, but I guess a little common sense would help. Well, never say never, but I think we are through flying Delta.

Pray for Lee to calm down and Jake's scans to go beautifully.

Love to all,
Kim

Sunday, July 31, 2005 7:43 PM CDT

We have all had a nice last weekend before school starts back. I actually had a Sunday afternoon nap (I cannot remember the last time that happened). We have just gotten home from a church youth swim party where Jake joined in as well. With his bald head he looks like a Professional Swimmer. He is getting ready for school they will be having an open house on Tuesday to meet their teachers and then school begins on Wednesday. Jake will be able to attend the first day and then he will be in NYC for scans Thursday and Friday. We will update as soon as we know something. Please pray that the chemo has done its job again and that the cancer has diminished even more.

Love to all,
Kim

Thursday, July 28, 2005 4:09 PM CDT

Jake is doing great. He is at a buddies house swimming and playing ball. His blood counts continue to rise. The plan is to go to NYC next Thursday and run all the NB test. After the results come back we will make a decsion on the next step. Kala made the Lowndes High fastpitch team! So things are going great in the Miller house right now. I will update as things progress.

Lee

Sunday, July 24, 2005 10:03 PM CDT

Jake is feeling great. On Wednesday we had to go in and get platelets, but everything else was good. On Thursday Jake and I headed for Luke's ball tournament in Johnson City Tennessee 8 1/2 hours later we arrived. Kala was not able to go because softball practice for High School ball has begun. Luke was playing in the USSSA World Series. His team started out poorly going 0-3 in pool play. They went into the double game elimination part of the tournament seeded 15th out of 16 teams. Then they made their comeback, they won their side of the brackett in double elimination without losing a game. This allowed them to play on Sunday in a final four tournament. They won the first game which put them in the gold medal game, but they came up short and won the silver. What a come back!!! Luke had an excellent tournament he knocked in the winning runs in two different games. (mom and dad are just a little proud ha!ha!
Jake will be going for blood work tomorrow and he is scheduled for a complete set of scans the first week of August. We are all going to enjoy our week off before school starts back on August 3rd. (yuck!)
Please pray for Kala because even though she was on the High School team last year and had a good year she has to go through try-outs again. She is very nervous as the incoming freshman are very good this year. She begins tryouts tomorrow and will know on Wednesday if she made the team. We are praying she makes it because being a part of a team sport is so important at keeping helping to keep her out of trouble.
Well, I guess I have rambled on enough for now.
Love to all and thank you for the prayers,
Kim

Tuesday, July 19, 2005 10:08 AM CDT

Jake was able to come home from the hospital on Sunday morning. He also had a friend spend the night last night; so, he is feeling pretty good. He had two bags of whole blood and two bags of platelets on Saturday. We will be going for labs tomorrow morning to see if he needs anything.

Thank you for checking in on us.
Love to all,
Kim

Saturday, July 16, 2005 11:31 AM CDT

Jake is feeling better today. His fever has come down alot. He is still running a low-grade that will go away completely with tylenol. He is eating a little bit at each meal which is good enough for me. You do not develop much of an appetite when you are just lying around. He is getting platelets and whole blood today; so, our fingers are crossed for a release tomorrow which will be 48 hours. His 24 hour blood cultures are negative which means they have not grown any bacteria. I will update tomorrow.

Love to all,
Kim

Friday, July 15, 2005 1:49 PM CDT

Jake has been feeling great all week. He has been swimming with Luke, playing outside, and eating great. We did labs yesterday and his counts have bottomed just like they are suppose to do. Things were going great until this morning. Jake woke up to a horrible sore throat and a fever at the magic number that sends us automatically to the hospital. I am fixing to head over to South Georgia Medical to releave Lee and spend the night. Jake will be there for at least 48 hours maybe longer. He is feeling pretty rough today because his fever does not want to come down; so, they have increased his tylenol dose. Hopefully that will work and give him some relief from the pain in his throat. I will update as the weekend rolls on.

Kim

Monday, July 11, 2005 2:13 PM CDT

Jake is home! He survied another round of high dose chemo. He did alot better this time, than he did last time. He will get lab work done on Monday's and Thursday's until the end of the month. He will probably get admitted next week for fever, but it will be here in Valdosta. Once he recovers we will head back up to NYC the first week of August. They will do all of Jake's test and scans and then decide which direction to go in. I am just glad for the time at home. I will keep posting as things change, which they will.

Lee

Friday, July 8, 2005 10:21 AM CDT

The sickness has begun. Jake throws-up everytime he moves which is about every 45 minutes because he has to get up for the bathroom. Lee says all in all he is in good spirits. They are both ready to be home and we are ready for them to be home.

Thank you all for the wonderful encouraging notes it means a great deal to us to hear from you.

Love to all,
Kim

Thursday, July 7, 2005 8:25 AM CDT

I updated last night, but apparently I did not do something right. So, here I go again. Two days are down and Jake has three to go. He is doing pretty well, but Lee is trying to be proactive with stopping the nausea. We are giving him more medication than we have in the past and he is sleeping alot, but that is okay if it doesn't have to battle all the sickness that comes with chemo. Day three was the beginning of the major sickness last time, but prayfully we will be able to stay on top of things and not let it get too bad. Lee will hopefully be back in the computer business today and will be able to give a better update.

Love to all,
Kim

Monday, July 4, 2005 6:10 PM CDT

WOW!! What a wonderful weekend. Jake is feeling great. He got to go to the beach and swim in the Gulf of Mexico, thankfully no sharks. He is all tanned and has a great apetite. Kim has lots of pictures she will be posting soon. I have some unfortunate news to report also. I was let go from my job last week. It was a shock to say the least.
I had been traveling the entire country and selling computer software. It was going great, or so I thought. There is no logical reason for the call I recieved last week. I was in Miami, Florida in the parking lot of a customer when I got the call. I had to take their company truck to the airport and rent a car for me to return home. It was really strange. Kim and I are putting together my new resume and sending it out. Back to Jake, he and I are going to ATL tomorrow and start another high dose round of chemo. We will be there until next Monday. I will try to keep everyone informed.

Lee

Monday, June 27, 2005 8:13 AM CDT

Jake had an incredible time at camp. The first thing he said to us when we picked him up was can I come back next year. He took some pictures so as soon as we get them developed I will add them to the site.
Please be in prayer for Luke on Wednesday he has an important event happening from 8:30-11:00 and he is very nervous.

Love to all,
Kim

Wednesday, June 22, 2005 9:54 AM CDT

I just wanted to give a little update, Jake is doing great at camp. A Camp Counselor called on Monday to let us know Jake was having a blast and adjusting well to camp life. We are definetly going to do another round of chemo beginning Tuesday July 5th. So we are off to the beach and to do a little flats fishing next week.

Kim

Monday, June 20, 2005 12:58 AM CDT

Thank you prayer warriors. Jake's scan was very positive. The cancer has not grown anymore and the spots we have are smaller or less visible than they were before. We still have a long way to go in this battle, but at least we know what we are doing is having a positive impact. The Doctor wants to process the information from Jake's scan and mull it over for a couple of days and get our plan together for what is next. Lee will be in Manhattan on Wednesday of this week for work and will stop in to see Dr. Kushner to go over our plan for Jake. We are not going to start anything until the Tuesday after the 4th of July; so, we are going to the beach for the weekend. YEAH!!!!!!!!!!!!!!!!!!!!
I wanted to share a funny story that happened last night in the wee hours of the morning. As you all know Jake went to sleep away camp yesterday and I have been just a little sad about this. I finally drifted off to sleep about midnight last night after waiting up to see if I got a phone call from Jake wanting to come home and the phone rang at 3:30 this morning. My heart stopped (as well as Lee's) because as you know no middle of the night phone call is ever good news. It wasn't Jake thank goodness because I actually want him to make it because he is over 4 hours away and it would take awhile to get to him if he needed us. It was Delta Airlines calling to tell us that Lee's 6:00a.m. flight out of Valdosta had been cancelled and he would probably not get on a flight until tomorrow. They were able to get him on an 8:00 flight out of Jacksonville; so, I had to get up at 5:00 and drive him to Jacksonville. Needless to say I am tired, but Lee is in Providence, Rhode Island save and sound and as far as I know Jake is having a great time.
We love you all and keep those prayers going,
Kim

Friday, June 17, 2005 11:29 PM CDT

Lee, Kala, Luke, and I dropped Jake off at camp today. I am excited for him, but I just wish I was able to talk with him to see how he is doing. The camp is amazing there is so much to do. I'm sure he is having a great time and not missing us at all. I am already counting the minutes until we pick him up on Saturday.
We will update as soon as we know something about his test that was Saturday.

Love to all,
Kim

Wednesday, June 15, 2005 10:27 AM CDT

Jake and I leave for NYC tomorrow morning at 6:00a.m. out of Valdosta. It is going to be a whirlwind trip since he only has one test we will be returning Friday at 1:00.
PRAY PRAY PRAY PRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Our prayer is that this new chemo is doing its job.

Love to all,
Kim

Monday, June 13, 2005 9:12 AM CDT

Jake had a very nice weekend. He was able to go with us and watch it rain all weekend at Luke's baseball tournament. Luke's team was only able to play one game, but they kept hoping they would be able to play so we stayed there all weekend waiting. Jake didn't mind he had a good time hanging out with the team. He is feeling like his old self again. He is once again eating and eating very well. I will keep everyone updated as we find out stuff.

Love to all,
Kim

Thursday, June 9, 2005 10:26 AM CDT

We had to have Jake's counts checked on Tuesday and they were low, but not low enough for a transfusion. But, that made us have to get counts again on Wednesday. We went early that yesterday and had them checked, but because of where we are and where Jake's Doctors are we did not get the results until 2:30 yesterday and he needed a transfusion. Valdosta does not have a clinic so we have to be admitted for observation to the pediatric floor to receive a transfusion. He needed two bags of whole blood and a bag of platelets. By the time we had him cross checked and the blood ordered he did not begin until around 6:30 so Jake and I did not get home last night until about 1:30 a.m. We did not mind because we were just so happy we got to come home. South Georgia Medical does a good job and we are thankful to be able to do this from home. It would have taken just as long if we had been in clinic in Atlanta or New York getting blood is just a slow process. The goods news is as long as he does not develop any systems we do not have to go to any Doctors or do any labwork until Monday. Luke's ballteam is playing in the State Tournament in Leesburg Georgia starting Friday night through Sunday. We are excited and hope his team does well. He will also be playing in the World Series in Kissimee Florida in July. I will get you informed of Jake and thank you for all of your prayers.

Kim

Monday, June 6, 2005 3:46 PM CDT

Jake was able to come home from the hospital on Sunday. He received one bag of whole blood and three bags of platelets. He had several nosebleeds during this time with one that lasted for about 4 hours. (Lee's night at the hospital) He is glad to be home, but he is still not eating very much. Hopefully, the rest of the time until we go back to NYC will be uneventful. He goes for blood work tomorrow.

Love and hugs,
Kim

Friday, June 3, 2005 12:17 AM CDT

I just wanted to update and let everyone know that Jake is at South Georgia Medical. We arrived home Wednesday night from Atlanta and on Thursday around lunch Jake developed a fever; so, do not pass go, do not collect $200, go straight to the hospital. So, I spent the night there last night with Jake and Lee is staying tonight. He feels a little better today, but is developing mouth sores in his mouth and throat. He has not been able to eat since the Tuesday of his chemo which was over a week ago. He has lost about eight pounds and is pretty weak right now. Things should start bouncing back soon and we are ready. This round has been tough. It has been a long time since Jake has felt this bad for this long. Well, thank you for the kind words, calls, and all of the prayers.

Love,
Kim

Monday, May 30, 2005 10:02 PM CDT

We have had an eventful weekend. Luke had a baseball tournament in Atlanta. His team won both games and then got rained out. Jake was released from the hospital on Saturday morning. Dr. B. ask us to stay in Atlanta in case any situation came up. A very good friend on mine gave us the keys to his condo at the Atlanta motor speedway, it is very nice. Kim brought Jake to the condo Saturday morning and Kala stayed with him so we could watch Luke's games. There was a "miscommunication" about Jake's release. On Saturday night Jake was still throwing up and began to dehydradte. I took him back to the hospital and he got iv fluid and zophran by iv. The sickness stop and by Sunday morning he felt much better. The doctor told us if we had not brought him back when we did permenant damage would have been done to his kidneys.She indicated to us he should have never been released. Everything is fine now, but it was rough over the weekend. Jake, Luke, and Kim are still at the condo. Kala has returned back to Valdosta and I am in Kentucky at a meeting. Jake is going to the clinic the rest of the week for daily check ups. I will keep everyone up to date. Thanks for your continued prayer.

Lee

Friday, May 27, 2005 12:31 AM CDT

The last day of chemo is over!YEAH! Jake has endured this round of high dose chemo. He can not move without getting sick, but hopefully that will get better soon. He will have to stay in the hospital 1 more night. I think once he gets out tomorrow he will feel much better. Luke is in a baseball tournament this weekend in Atlanta. Jake's doctor wants us to stay close for the next few days, so we are. We will hang out here in Atlanta for the next 5 or 6 days. The game plan is to recoup from this round and head back to NYC June 16th. He will redo all the scans and then we will make the next move. Most likely that will be comeing back to ATL for another round of high dose chemo. But, we will have to wait and see. I will continue to update as things change.

Lee

Thursday, May 26, 2005 8:08 AM CDT

Wow what a night! Jake is an amazing person. The high dose chemo is starting to kick Jake's butt. But, that is what it is suppose to do. Let's hope it is also kicking the cancer out of him. Jake can not move without throwing up. He is resting now. As many of you know,part of this treatment is "flushing" the chemo through your system. This means he has to empty his bladder every 60 to 90 min. The problem we are having is everytime is stands up to empty his bladder he becomes sick. This is just part of chemo. Jake is in good spirits though. We have been backing up the time we start everyday,so that we can get out of here early tomorrow. I hope to be discharged around noon, but we will see. Thanks to everyone for the love and prayer.

Lee

Wednesday, May 25, 2005 9:20 AM CDT

Two days down, Three to go. Jake is holding up pretty well.He has had a couple of "sick" times, but over all has done well. His chest is sore from the port surgery yesterday. He is laying around watching cartoons and playing his xbox for the most part. I talked with NYC yesterday, the bone marrow pulls came back clean. This is a positive sign. The pulls are only samplings, but no cancer is a good sign. I also spoke with a doctor in Houston, Tx. yesterday. She is doing a new type of treatment for NB, but her study is full. I will continue to search for the right situation for Jake.

Lee

Tuesday, May 24, 2005 8:52 AM est

Jake had a good night. The day was long. It took us from 7:30 until 3:00 to get into a hospital room. Once we got in, it took 5 more hours before we could get started. So, at 8:00 last night we began chemo. Jake is getting 3 types of chemo drugs. Each one runs for 1 hour. He also is getting mesna and zophran around the clock. He had 1 nausea situation last night, but it was short. We stayed up until 2:00 a.m. watching movies and emptying his bladder. We slept until 5:00a.m. and a "wonderful" lab tech came into the room, fliped all the lights on, and made sure we got up to take Jakes blood. After that the surgery team begin comeing in and preping him for his port replacement. He is in surgery now. We are going to start chemo today at 4:00 and we should be able to sleep tonight. I will keep everyone updated.

Lee

Monday, May 23, 2005 11:29 AM CDT

UPDATE UPDATE UPDATE
Jake and I are in Atlanta. It was hard to leave Valdosta yesterday. We did not leave until late last night and arrived in ATL at 1:30 this morning. We got up at 7:00 and came to the hospital at 8:00. Jake's port is going to have to be replaced. It is because he has hit a growth spurt and he needs a larger line. He has a regular IV in his arm now. The surgeon will replace his port tomorrow. We are in the clinic waiting on a bed to open up. I hope I will have internet service in our room and I will continue to update. Dr. B. and I had our conversation this morning. He is always optimistic and feels like Jake will respond well to the chemo. Thanks to everyone for the prayer and I will keep you updated.

Lee

Saturday, May 21, 2005 6:21 PM CDT

I just wanted to give a specific prayer request for Jake for the start of chemo on Monday. His port under his skin has shifted and is now in a smaller vein. There is concern that this vein cannot handle the chemo; so, they are going to perform a procedure on Monday that will have a 50/50 shot of moving the port back to the vein that it was originally in. We are praying very hard that this will work because if it does not he will have to have surgery Tuesday to remove and put a new one in. We just do not want him to have to undergo another surgery on top of the high dose chemo that he will be undergoing.

Thank you for listening and all of the prayers that I know are going up as your read this message.

We love you all and the notes are inspiring because we know the power of prayer and it is comforting when you let us know you are out there.


Kim

Wednesday, May 18, 2005 1:29 PM CDT

We are in NYC today. Jake just finished his final test. Normally we would not get the results until Friday. However, this is not a normal situation. Kim and I have seen enough mibg test to understand when there is a problem. The 3 spots we had in March have grown and there are at least 3 more. The low dose chemo we have been doing has been a failure. Jake still looks great and feels great, but his body is once again covered in Cancer. Kim and I are in shock. We left the mibg scan and went upstairs to the clinic and had a meeting with Dr. Kushner. He called down to the mibg people and confirmed what we had seen. He is adviseing we do a high dose, sledge hammer round of chemo. We called Dr. B. in Atlanta and got that set up for next Monday to start. Jake and I will head up there on Sunday and start on Monday. It will go for 5 days. He will need blood transfussions, feel sick, and will run the risk of fever. This sucks! But, we have to get focused and keep fighting. We will come back up here (NYC) on June 17th and retest and see if this is working. I will keep everyone informed.

Lee

Monday, May 16, 2005 1:21 PM CDT

Jake, Lee, and I will be boarding the plane for NYC in about an hour. We are asking for you to pray for us this week this is a big week. Lee and I are praying for healing for Jake, wisdom in the decision making for us and the Doctors. I want to thank all of you in advance because I know you will be praying for all of us this week. I will give test results as soon as we know them.
We believe that God performs miracles everyday in our lives and we know that he is performing them daily in Jake's life.

Love and Hugs,
Kim, Lee, Jake, Kala, and Luke

Monday, May 9, 2005 9:22 AM CDT

As you can see from the picture above Jake had a great weekend. I personally had a wonderful Mother's Day. Jake loves to catch for Luke and he says it is just not the same unless you get the full effect. (catchers gear)
We had bloodwork done this morning so we will wait on the results to see if anything further is needed. He seems fine and has shown no symptons of needing any blood. We have our plane tickets and all of the tests are scheduled for NYC on May 16th and 17th. Thanks for checking in and have a wonderful week.

Love to all,
Kim

Thursday, May 5, 2005 8:20 PM CDT

Things are moving along. Jake is in Atlanta at the Braves game with his school. This has been a wierd couple of days for Kim and I. He was so excited about this field trip.I am glad he got to go. They went to the Atlanta zoo, sceince museum, and a Braves game. He called Kim last night and was having a great time. He will be back tomorrow. We will do blood work in Valdosta the next couple of weeks and then head to NYC on May 16th. It will take a couple of days to do the test and get the results. After that we will determine the best possible treatment for him. There is no need in speculating at this point, the test will help determine the path we take. Thanks to everyone for all your thoughts and prayers.

Lee

Saturday, April 30, 2005 10:06 PM CDT

We are home again. Round 2 of chemo is complete. The next step is a plane ride to NYC on May 16th. Once we get to NYC they will do all the test, bm pulls, ct scan and mibg scan. The best possible result will be NO cancer can be found. If this is the case we will return to Atlanta and do 2 more rounds of chemo just for good measure. If the test results are not good, we will have to get more aggresive. This could be a variety of treatments. Jake is an amazing person. He goes through 5 days of chemo in Atlanta and returns to Valdosta and hits baseballs at Luke's practice today. His energy is amazing to me. He is eating well, and feels great. He still has a small amount of hair on his head. It is spiked up and colored BLUE. It probably will not last much longer, but it is kinda nice while it is still there. He is going on a school field trip next Wednesday,Thursday, and Friday. Kim and I are not going. He is also getting to go to summer camp in June. He is very excited about camp and I hope he gets to go. I will try to get a picture of the "new hair" and get it posted. He is a little camera shy.

Lee

Wednesday, April 27, 2005 5:01 PM CDT

Well, Jake decided to cut his hair. We had it burred off last night. He was pretty sad at first, but he is adjusting and getting use to it. As you can see on the picture above he had let his hair grow out pretty long. He had become very attached to his hair this time in the past it hasn't been a big deal when he started to lose it. I guess it has a lot to do with the age he is now. On an up note he feels wonderful absolutely no problems with the chemo at all. He eats three meals a day (and then some).

Thanks so much for listening and all of your prayers,
Kim

Tuesday, April 26, 2005 11:40 AM CDT

It is another wet, cool day in Atlanta. Everytime we come up here the weather turns cool and wet, but it is suppose to warm up by the end of the week.
We are just about to finish up our second day of chemo. Jake is feeling fine just a little bored. We are going for Spaghetti tonight at Olive Garden and he is excited about that. We may even go to a movie to pass the time. He is debating about whether to go and shave his hair or not. It is falling out quite a bit now and starting to bug him, but I am not sure he is ready to let it go yet. Last night I told him I was a little bummed by the fact that his hair was falling out and he said, "me too."
He doesn't complain about it and he will be a trooper about that just like everything else.

Thanks for checking in and I will keep you updated,
Kim

Wednesday, April 20, 2005 10:12 AM CDT

Jake is feeling great. His blood work up from Monday looked great. He is hangging out at the bookstore, playing Xbox, talking with all the college girls that come in, and doing a little school work. The school has been wonderful throughout this ordeal. Jake get's 1 to 1 attenion from his teachers at the booktore. It has been good to keep him going with his school work. Jake will have some more blood work on Friday, then he and Kim are headed back to Atlanta on Monday to start the second round of chemo. Thanks to everyone for keeping up with us.

Lee

Saturday, April 16, 2005 9:21 PM CDT

Just a quick update Jake is feeling good so far no complications with low blood. We had a pretty good test that let us know his platelets were pretty good. Luke and Jake were outside playing yesterday and Luke accidentally hit Jake on the forehead with a rock. Jake's head was bleeding pretty good, but after about ten minutes we were able to get the bleeding to stop. He had a horrible knot on his forehead last night, but that even looks better today. Luke felt absolutely horrible, but they were outside just being boys which I love. I will take that normal boy stuff over cancer anyday.

Jake does blood work twice next week to make sure he is ready for his next round of chemo which begins the week of April 25th.

Love,
Kim

Wednesday, April 13, 2005 9:27 PM CDT

I was wanting all of our wonderful family and friends who have been so wonderful in praying for Jake to take the time and pray for someone else for us. A dear friend that I have made at our Church here in Lake Park and I was also in a Thursday morning bible study with her lost her husband suddenly tonight. They have three children, 7th grade, 4th grade, and 4 years old. I was just with her tonight at church laughing and having a good time. Her son is in my class on Wednesday nights. She found him when she came home from church. Just pray for comfort and strength for this family.

Thank you,
Kim

Sunday, April 10, 2005 2:33 PM CDT

Jake is feeling great! He went to a birthday party of one of his buddies last night. He has been in the pool swimming all day today. We will go and check his blood tomorrow and see what is happening on the inside, but outside he looks great. This situation continues to aggrevate me, I hope we can get Jake clean and spend a lot of time swimming and playing all summer long. Kala and Luke are both going to be playing travel ball all summer. This means most weekends we will be at a ballfield somewhere. Kala will not start until after school gets out in May, but Luke starts next weekend. Kim and I both love going and Jake likes the concession stand most of the time. He does not know the names of the ballparks, but he remembers which has the best concession.Thanks to everyone who continues to read Jake's site and pray for him. Please pray the 2 rounds of chemo will kill ALL of the cancer that flows through his body.


Lee

Thursday, April 7, 2005 11:53 AM CDT

Jake is feeling well and eating me out of house and home. We had an interesting day yesterday. Jake was just sitting and playing his x-box when his nose started bleeding. Just a little at first, but then alot. He was not due for blood work until Monday because he counts were not expected to drop until then. Well, I contacted the our local Doctor to tell him we were going to go do labs early because it looked like our platelets were low. After 20 minutes Jake's nose was still pouring so we had to go to the emergency room instead to get the labs done more quickly. Also, to be where we needed to be so he could get his platelets. As I was filling out the paperwork in ER his nose stopped. Jake and I both breathed a sigh of relief because last time we had a nose bleed like that he had to have his nose sautered to stope the bleeding. Thankfully, his platelets and the rest of his blood came back great. It was just an allergy/sinus related nose bleed. His brother Luke gets them all the time and they usually last 10 to 20 minutes, but because of that "cancer" word it causes you to be on high alert for everything. I hate it causes panic, but what are you going to do.

Kim

Tuesday, April 5, 2005 8:19 AM CDT

It was a beautiful weekend in Valdosta. The boys played outside all weekend. Lee put the tent up for the boys to campout in, but it is still a little chilly in the evenings. They decided to tough it out inside instead. Jake did not have any major side effects from the chemo last week. We will do labwork on Monday of next week to see if he is having any problems with low counts. If he is we will be able to get the blood he needs here in Valdosta and not have to drive back to Atlanta. Thank you for the continued prayer and concern and I will keep you updated as much as I can.
I have added new photos.
Kim

Friday, April 1, 2005 7:47 AM CST

It is FRIDAY!!!!!!! Jake has done very well and we have had fun this week with everyone. Brothers and Sister have gotten along pretty well considering the long days we have had. Everyone is a little tired today and a little tired of each other. Hopefully, they will watch movies and sleep on the way home (not fight). We have had to be at clinic early everyday this week so we are looking forward to sleeping in tomorrow (in our own bed).
Jake is due for his second round beginning April 25th. We will be at home for 3 weeks and hopefully he will have no issues with low blood counts and especially no issues with fever.

Thank you for your love and prayers,
Kim

Tuesday, March 29, 2005 7:18 PM CST

2 days down 3 to go! Jake is handleing it well so far. We start at 8:00 and finished at 2:00 today. It is like going to work. He is having some stomach pain, but he continues to eat. Jake is one of the toughest kids you will ever encounter. His spirits are good and he is getting it done. We have all of our children here this week for spring break. There are some challenges trying to keep everyone happy, but we are manageing. Tomorrow if Jake still feels good we are going to Stone Mountain. Everyone is looking forward to playing putt-putt. Sometimes you have to make the most of the time you have. Tomorrow I have a meeting with Jake's doctor to discuss our future. I am anixous to talk with him, but I do not expect many answers. I will post again soon.

Lee

Monday, March 28, 2005 11:41 AM CST

Hello,
We have arrived in Clinic in Atlanta and it is cold outside. When we left Valdosta this morning it was 60 and now it is raining and 48 here in Atlanta. Everyone here in the clinic has been so nice and we have began our premeds and chemo will start in about an hour or so. Jake is eating dry cereal and drinking a coke oh, and watching the Incredibles. Please pray for little to know side effects for Jake.

Thank you to everyone who is checking in on us.

Kim

Friday, March 25, 2005 7:40 AM CST

The decision has been made. "If it ain't broke, don't fix it" is what we are going with. Last year at this time Jake had chemo in Atlanta to prepare his body for NYC. The treatment we used was effective and other than hair loss, no side effects. After much thought, our Doctor in Atlanta has decided to try this once again. Jake is on spring break next week and we are starting on Monday. Kim, Kala, Luke, and I are going with Jake to Atlanta. We will be there Monday until Friday. He will get 21 days off and go back and do it again. The best case is the chemo wipes out the cancer completely after 2 rounds. The worst case is the cancer does not respond and even grows. We will take option #1 please. I wish it was that easy! We still have no direction for after the chemo, but that's okay. We have to get focused on the task at hand and get Jake clean once again.

Lee

Tuesday, March 22, 2005 11:30 AM CST

Lee spoke with Dr. B from Atlanta last night and they are still not sure which chemo drugs to use. They are leaning toward a phase 1 study which includes two chemo drugs. The dosage is very mild and it is given orally. Which means Jake can do this from Valdosta. However, this is something Jake has never had before and we do not know how his body will respond. We are all praying and trying to make the decision, do we go with something new and take the risk that it doesn't work and we have wasted six weeks or do we go with what has worked in the past and take the chance of Jake's body building and immunity to it. That is the 20 million dollar question and we have until Monday to make that choice. So, pray for guidance for us and Jake's Doctors. Pray for Dr. B as he researches this matter further, pray that the answers he is looking for will be easy to see.

Love to everyone,
Kim

Friday, March 18, 2005 9:26 AM CST

Thank you to everyone who is praying. It has been very nice hearing from all of our old and dear friends from Oakwood. It was a wonderful feeling to know Jake is being covered in prayer.
He is feeling wonderful and he not having any pain with these hotspots that were found. Which we are very thankful for.
The plan is still the same to begin chemo on March 28th. We still are not sure exactly which two chemo drugs we are going to use. One choice is really not better than any other choice it is just a matter of choosing. Our Doctors in Atlanta and NYC have talked with one another, but they have not informed us which way they are going. Which is not surprising because it has no bearing on when we are going to start, that is still the same. Jake will not have any major side effects from the drugs; so, I have been taking requests of things they would like to do that week while we are in Atlanta. He and Luke have had absolutley not problem coming up with things if they have their way I not sure there will be time for sleeping.

Once again thank you for all the concern and kind words in the guest book entries. What a blessing to have such wonderful friends.

Kim

Monday, March 14, 2005 8:16 PM CST

Jake will begin low dose chemo on Monday, March 28th in Atlanta. That is the start of the kids spring-break; so, Luke will be able to come along. There are little to no side effects; so, Jake will love having Luke along to help with the boredom. The plan as of now is to do two rounds of low dose chemo in Atlanta and then we will go back to NYC for testing. If the cancer is gone, we will start doing a preventive treatment.(mibg therapy,3f8,or an arsenic chemo) If the cancer is still there, we will do more chemo. We are not sure which drugs he will get, Dr. Kushner (NYC) and Dr. B (Atl) are going to discuss that over the next couple of weeks and it will depend on the preventive treatment that is decided. It sounds a little complicated, and it is. Please pray for guidance and knowledge for our Doctors and peace for us.


Lee and Kim

Monday, March 14, 2005 7:46 PM CST

Jake will begin low dose chemo on March 28th. That is the beginning of our springbreak; so, Luke will be able to go to Atlanta with us. We have decided to do the two rounds there and then go back to NYC for testing and to see what we will do next. The doctors are very optimistic that this chemo may take care of the trouble spots all together. If it doesn't we will be looking at doing a study called MIBG Therapy at Sloan Kettering. This is a very harsh treatment a lot like bone marrow transplant. Please keep us in your prayers, not only for Jake's healing. but for God's wisdom as we have to make choices in what is the best next step. I wish so much there was a perfect road map we could look at; so, we know which step to take next for Jake.


Kim

Friday, March 11, 2005 2:35 PM CST

The cancer is back. Jake tested positive on his mibg in 3 spots. His ct scan looked fine, his blood work looked fine, we are still waiting on his bone marrow results. Kim and I are trying to put together a game plan with Dr. Kushner. We are going to travel to Atlanta on Monday and meet with the group there. Dr. Kushner feels like we should do 2 rounds of chemo, then retest and see if Jake is responding. We will do the chemo in Atlanta and head back to NYC to retest up there. It looks like he will start chemo on March 21st. Jake does not know yet, I am going to tell him this weekend. I hate cancer! I'm sure things will change 10 times or so, but I will try to keep the site up to date.

Lee

Wednesday, March 9, 2005 12:18 AM CST

Well, Jake and Lee are on their way back to LaGuardia to fly back home. All went well getting Jake's scans done. We are waiting on results and it will take up to five days to get all of the results back. Hopefully in the next day or so I will have some NYC pictures of Jake and all the snow to share. Jake is feeling much better from his bout with pneumonia. It is going to hang around awhile, bit at least he feels better. After this trip he has decided that he doesn't want to live full time in NYC anymore, he says it is just too cold!!!!!!!! We have gotten one test result back and that is a blood test called LDH. The normal range is from 160 - 220 and if it is elevated that is a sign of active cancer. Jake's results were 168. That is no guarantee of no cancer, but it is a nice first step. We do not have to go back to NYC until June for his next round of scans. We will test once a month to see if he has unHAMAed and can start the antibodies again. If that happens before time for his next scans off we will go for two weeks. With the type of HAMA that Jake has they do not expect that to happen, but with cancer you never know.
We are going to hang out in South Georgia where hopefully it will warm up soon and stay that way. Jake is going to finish out the school year, go on a couple of field trips, hang out with buddies, take one day at a time, and just have some fun.

Thank you for checking in on us and I will keep the site up to date and hopefully add some great new pictures now and then. Jake has a head full of hair that he is extremely proud of.
Please keep Jake and the rest of us in your prayers.
Love,
Kim

Saturday, March 5, 2005 8:37 PM CST

Wow, what a week. Kim and I were in New Orleans at a bookstore conferance, Jake was staying with Kim's mother. Jake had to be hospitalized with pneumonia on Tuesday. Kim had to rent a car and drive home, it was quite an adventure. The good news is Jake came home on Thursday. Jake and I are heading to NYC on Monday to do a complete check up.(bm pulls, mibg scan, ct scan, and chest xray for a follow up to pneumonia) We will be heading back home on Wednesday. Jake is feeling much better, he played outside today. We are cleaning up our yard and Jake and Luke got to paint a fence today. I think they got more paint on them than the fence. It was a lot of fun though. We are ready for summer. I hope this summer we spend a lot of time fishing in the gulf of Mexico, and stay out of NYC and 3f8. Thanks to all who read our page and keep Jake in your prayers.

Lee

Tuesday, March 1, 2005 7:33 AM CST

Well, viruses have been running through our house like crazy. Luke and Kala started it and then Jake came down with it. We thought he was getting better, but now he has a very bad cough and seems to be hurting all over. I am in New Orleans at a Bookstore Convention, Lee is here as well. So, we are very torn about what to do. Lee cannot leave so our only options are to pay a fortune for me a plane ticket or I can rent a car and drive myself back. It is so hard to know what to do whether it is just normal kid stuff or if it is cancer related. We do have some comfort I guess in the fact that he has the same symptons that Luke & Kala had. He is due for test the first of next week so we will get answers quickly I hope. Lee, mom, and I have decided to watch him today and make a judgement about whether I will head home late tonight or early in the morning. Decisions never seem to be black or white; so, please pray for healing for Jake and guidance for Lee and I. Thanks for listening,

Kim

Thursday, February 17, 2005 8:05 PM CST

We are headed back to NYC on Monday March 7th. Jake will do bone marrow pulls on Tuesday morning, and a mibg injection that afternoon. Wednesday morning he will have a ct scan, and mibj scan. After all of that we get to go home. This is a normal check up and everything should go smooth. Jake is feeling great, and looks even better. I can't wait until the Doctor sees him. He is adjusting well to school and has buddies coming over constantly. Thank you to everyone for all the prayers and thoughts. I will keep you posted as things develop.

Lee

Wednesday, February 9, 2005 8:51 AM CST

Jake is still HAMA positive which means we are going to NYC for three days not two weeks. We will head up in March for 3 days of scans (which is always a stressful time waiting on the results). Please start praying now that Jake's body is still fighting off the cancer and that it is not rearing its ugly head again. Lee and I believe God can, has, and will continue to do miracles in Jake's life; so, please continue to keep us in your prayers. All is well with his cancer right now, but neuroblastoma is a very nasty disease and can come back at anytime. Also, please sign the guestbook we all love hearing from everyone.
Thank you so much for all of your love and support.
Kim and Lee

Monday, January 31, 2005 9:29 PM CST

Jake is doing well. He feels good and continues to have a normal 11 year old boy's life. He is complaining about math homework, having friends spend the night, and playing with his brother. I am so grateful for these times. He is doing blood work in Valdosta on Thursday and we will overnight it to NYC. Depending on these results (which we will not know until next Tuesday) we will go to NYC for either 3 days of test or 2 weeks of treatment. I will continue to keep the site updated.

Lee

Monday, January 31, 2005 11:48 AM CST

Well, we do not really have any news to report right now. Jake is doing wonderful. He is at school everyday and hanging out with friends during the weekend. We do have blood work coming up on this Thursday which we will send to New York. We will get the results next week and that will determine if we are going to NYC for three days or two weeks. If Jake still has a resistance to the drug we will only go for scans which will be three days if the HAMA is gone we will go for a 3F8 treatment and that is two weeks. We will let everyone know when we find out. Thanks for checking in and thanks for the prayers,

Kim

Tuesday, January 18, 2005 8:46 PM CST

Jake is getting in the swing of things. School is going great. He has 5 more days of Accutane. I will be so glad to be done with this drug. He has 2 weeks off and then 2 weeks more of the drug. That will be his last round forever. He has been invited by Make-a-Wish to help in their fund raising in April for Lowndes County. That will be a lot of fun. He may get to play soccer this spring, we have not decided yet. I will keep everyone posted.

Lee

Thursday, January 13, 2005 5:18 PM CST

Things are going great. We had a wonderful time in Disney with all the Ronald House families.Jake feels great and looks great. He has started Accutane. He also went back to school today. His teachers feel if we can get him back on a regular basis he can make great strides in catching up. Kim had to bribe him with the possiblity of a hamster if he could make it until the end of school.

Lee

Wednesday, January 5, 2005 12:03 AM CST

YEAH!! We are home! Jake has hammaed. We will have to draw blood in Valdosta on Febuary 4th and send it to NYC for testing. Depending on the results, we will be going back to NYC in March for testing or treatment. The bottom line is we are home until March.

Lee

Monday, January 3, 2005 2:43 PM CST

Jake had a good day, No pain. They took blood for a hamma test today. We will not get the results until late tomorrow. If he has hammaed, we get to go home Wednesday. If not we will be here until Saturday. Jake feels good and is sleeping off the pain meds now. He is ready to go home and so am I. Jake does not know, but if we get to go home Wednesday, we are going to Disney on Thursday. The Ronald House takes a trip annually to Disney and we are invited to go with them. I am not going to tell him until we are on the plane. If we don't make it home on Wednesday he will not be disapointed. I will keep everyone informed as things change.

Lee

Thursday, December 30, 2004 1:48 PM CST

Jake experianced his first 3f8 pain today. I had just worked it out for us to go home today if he had no pain. But, it was not meant to be. We are still going to test him on Monday for hamma, but I doubt it will happen now. We will be here the full 2 weeks. The clinic is closed until Monday, I am going to try to get Jake out of the house. It has been too cold and nasty to get out but it is suppose to warm up this weekend. I have cabin fever but he is content sitting in the room. I will update next week when we get our hamma test back.

Lee

Tuesday, December 28, 2004 2:44 PM CST

What a weird day. Jake had no pain again today. This means his body is not accepting any more antibodies. This is a normal situation and nothing to be alarmed about. It is called HAMA. We will continue treatments until next Monday. Then a hama test will be given, if it is hama then we are DONE! It will be Tuesday before we know the results of the test. Jake feels good and is eating like horse. He was laying in the hospital bed this morning before we started singing "I feel good". I am sure things will change 10 times over the next couple of days and I will try to keep everyone informed.

Lee

Monday, December 27, 2004 10:36 AM CST

Hello everyone,

We are back in NYC. Jake started treatment this morning. We had a great Christmas in Valdosta, it just did not last long enough. Jake's Doctor came in this morning and was very upbeat. Jake looks great, feels great, and is right on track with his treatment. We have 2 weeks of treatment and then we get an eight week break. YEAH!! We are all ready for this break. I will keep you posted as things happen this week.

Thanks,

Lee

Tuesday, December 21, 2004 5:45 PM CST

Wow, it has been a long time since we updated, sorry. We are having a great time being at home. We have been so busy and Jake was able to go back to school for the week of all the Christmas parties and Christmas fun. He is doing great. He is looking a little shabby because he refuses to let us cut his hair. I can't say that I blame him.

We are in Chickamauga right now I am actually typing this from my father-in-law's house. We are here having Christmas with our family and trying hard to visit some very good old friends we never get to see anymore. What a great Christmas we are having.

Lee and Jake will leave the day after Christmas headed back for NYC for his next two weeks of treatment. After this round we get an eight week break. Lee is praying for unusually warm temperatures in NYC he doesn't do well in the cold.

Well, Merry Christmas to all and thank you for your prayers and support. We love you all,

Lee, Kim, Jake, Kala, and Luke

Wednesday, December 8, 2004 9:15 PM CST

WOW!! I just recieved an email from the Doctor and all of Jake's test came back CLEAN!! No cancer! YEAH!! This is the second time in the last 3 months. Every time we do the test Kim and I hold our breath, walk on egg shells and are generally irratable. When we get this type of result it is time for celebrateing. We are going to have a great Christmas. The store is crazy right now and we are going full blast getting ready for rush in January. Thank you to everyone for all the prayer. We are heading back to NYC on the 26th of December. I will keep everyone informed and try to post some Christms pics.

Thanks,

Lee

Friday, December 3, 2004 9:32 AM CST

We have received the results from the MIBG scan and is still clean. Which is wonderful news. Jake had bone marrow pulls about and hour ago. His back is very sore and it will be for a day or so. We have just started our last day of 3-F8 and believe me we are both ready to go home.

Lee is going to pick us up at the airport tomorrow in Atlanta and we are going to watch Kala's highschool football team play for the Georgia AAAAA State Championship game. My mom is going to come up also and hang out with Jake at the hotel so he can swim in the indoor pool instead of going to the game.

Jake is very excited about going home and decorating for Christmas and getting ready for Santa. Jake will be due to come back for his next treatment the Monday after New Year's.

We were able to meet several Nascar Drivers last night at the Ronald House. They came for a visit to play race car games, give out goody bags, and to sign autographs. Jake met Kurt Busch, Tony Stewart, Mark Martin and a few others. I sorry but I cannot remember their names. I took pictures which hopefully I will get on the webpage in a few days. Jeff Gordon was all scheduled, but he had the flu so he could not come to the house.

Thanks to everyone for visiting the sight and I will update again soon,

Kim

Wednesday, December 1, 2004 9:55 AM CST

We got started this morning with an MIBG scan. That scan is an hour and a half long where he has to lay perfectly still. He did great he just slept through it. Now we are in the flush of our 3-F8 and he is awake which tends to stress him out. He prefers to be asleep until the pain starts it seems to make him think it is less intense for some reason. He is a creature of habit when it comes to this treatment. Routine is soothing to Jake and right now he is trying real hard not to stress out because he can't sleep. His heart rate has gone up, but he doesn't seem to be in any pain yet. He has closed his eyes so maybe he will drift back to sleep.

Our favorite Nurse Practiciner Linda just handed me the first of our test results which is a clean cat-scan. We have no sign of disease in those tests, but we have three more test we are still waiting for results on.

We have 9 minutes left of our flush and day 8 will be over. Well it is over this was a very mild day. His heart rate did go up fairly high for Jake, but the pain was not bad at all. I just met Dr. Chiang which is head of the program we did not get to talk much at all. Right when he came in Jake rolled over and said he was hurting; so, Chiang left to get a Nurse and he did not come back.

Well, I am going to let him sleep for a little while and then we will go back to the Ronald House and hibernate it is a very rainy and windy day here in NYC.

Talk with you soon,
Kim

Monday, November 29, 2004 1:31 PM CST

We had a very nice time watching the Macy's Day Parade from an office building on 38th street. We were located four blocks from Macy's; so, it was very nice. Lee and Luke went back to Valdosta yesterday. We had a very good time together and Jake already misses having Luke here with him. We missed having Kala with us, but she chose to stay home and go to her high school's semifinal football game in the state playoffs. They won their game so now they get to play in the State Championship game this upcoming Saturday night. GO LOWNDES!!!!!!!!!!

We are on our last week of 3-F8 for this cycle and we are counting down the days until we get home. We are ready to decorate the house for Christmas and enjoy the rest of the holidays with family and friends. Jake was able to sleep through treatment today and did not have any pain until it was over. He had about five minutes of really intense pain. His oxygen level dropped very low because he was holding his breath. I had to get the oxygen out to help him breath. Finally, I told him to just scream it out and that seemed to help. He was scaring his mom, this was only for about 30 seconds that this went on but it seemed like an eternity. Things are good now and we are here at the Ronald House and he is sleeping off the medicine now.

Thank you for your continued prayers and support for our family,
Kim

Monday, November 22, 2004 5:56 PM CST

Jake did not experience much pain during 3-F8 only about 5 minutes which is considered a great day. However, after treatment is heart rate was high (not scary high), but high for Jake. With his heart history we had to stay there until 3:30 today which made for a very long day. It was okay for him he slept all the way through it. We are having the first of many Thanksgiving Dinners tonight which Jake and I will throughly enjoy. I have also signed us up to go see the Macy's Day balloons being blown up in Central Park on Wednesday night before the parade.

Thanks for all your prayers,
Kim

P.S. I do have cruise pictures and I am working on getting them displayed we are having a few technical difficulties.

Monday, November 22, 2004 5:56 PM CST

Jake did not experience much pain during 3-F8 only about 5 minutes which is considered a great day. However, after treatment is heart rate was high (not scary high), but high for Jake. With his heart history we had to stay there until 3:30 today which made for a very long day. It was okay for him he slept all the way through it. We are having the first of many Thanksgiving Dinners tonight which Jake and I will throughly enjoy. I have also signed us up to go see the Macy's Day balloons being blown up in Central Park on Wednesday night before the parade.

Thanks for all your prayers,
Kim

P.S. I do have cruise pictures and I am working on getting them displayed we are having a few technical difficulties.

Friday, November 19, 2004 10:06 AM CST

WOW!! We had a awesome time on our Disney Crusie. Jake feels great and looks even better. He is heading back to NYC on Sunday to start round 5 of 3f8. He will also have all of the test redone to see how things are working. I will keep everyone updated.

Lee

Wednesday, November 10, 2004 4:23 PM CST

Jake feels GREAT! He is packing his stuff and getting ready for his make-a-wish trip. We are leaving Sunday for a Disney Cruise. I will post pictures when we return. Jake and Kim will be leaving Sunday 11-21 to return to NYC for round 5 of 3f8, but we are going to enjoy our time before then.

Lee

Thursday, November 4, 2004 11:20 AM CST

There is not a lot going on right now. We are at home and very happy to be here. We just received word that Jake is receiving his Make-A-Wish and we are going on a Disney Cruise in the next couple of weeks. Everyone in the family is looking forward to that. We will be going back to New York for Thanksgiving, until then we are just hanging out and taking it easy.

Saturday, October 30, 2004 9:41 PM CDT

We are home! Jake had a hard time leaving NYC, but I managed to drag him back to Georgia. We had a problem in Atlanta today. We landed in T concourse and our plane to Valdosta left out of D concourse. We jumped on the train, but it broke down for 10 min. at B concourse. I jumped off and the door closed behind me with Jake still on. I ran to C concourse but the train beat me. I ran to D and there stood Jake. I was in panic mode, but he was calm and knew exactly what to do. He has been trick or treating tonight and has a buddy over spending the night. Thanks to everyone for checking in.

Lee

Thursday, October 28, 2004 1:00 PM CDT

Wow!! What a day. When you do 3f8, you have good days(few and far between) and you have bad days, today was awful! The best thing about today is it is over. We have 1 more day to go,and it can't come soon enough. Jake and I will leave on Saturday morning @8:00a.m. We will be home in time for college football and just hanging out.We are looking forward to rideing our golf cart trick-or-treating Saturday night. They have a big party planed tomorrow here in the clinic. The RM house also has alot going on. I will update again when we get home.

Lee

Tuesday, October 26, 2004 11:02 AM CDT

Jake is sleeping. He is doing well, the treatments are different each day, and he is sleeping all day and awake all night. We have 3 more days after today and I am ready to get home. Thanks for the prayer,

Lee

Friday, October 22, 2004 4:48 PM CDT

We have made it through our first week and Jake had a very good day today. The pain was not bad and it was very short. I would take a day like today everyday.
We did get some disappointing news this week, they gave us the wrong schedule. According to the schedule they gave us we were not scheduled to come back for eight weeks after this round; however, the new schedule has us coming back in three weeks for another two week cycle. We will begin that cycle the week of Thanksgiving. Then we still do not get to go to eight weeks we will have one more three week break which will put us up here the week of New Years. We will get to go to an eight week break after that. The silver lining in all of this is we are done in May with our antibodies treatment and we will not have to come back until September for testing. We will have our whole summer off. Look out BEACH here we come.

I am leaving on Sunday and Lee will be in charge. Pray for the nurses (ha!ha!)

Thank you for your prayer and please keep them coming,
Kim

Monday, October 18, 2004 5:45 PM CDT

We are back in NYC. Jake has started his 4th round of 3F8. This round is a little different in how he gets his medicine. It just makes for a very long day. We were there at the hospital for eight hours today. The rest of the week will be long, but hopefully not that long. It was a Monday and they were short staffed as well. Jake did have pain today and it was intense, but it only lasted for five minutes. Everyday is different, but we are very thankful for the day we had. We will deal with tomorrow when it comes we just try to take one day at a time. He is in our room playing with his gamecube and still a little groggy, but seems to be feeling okay.

Talk with you soon,
Kim

Sunday, October 10, 2004 3:43 PM CDT

We are having a great time being at home. Jake has been going to school and playing with his friends alot. Jake is free of cancer again and we are continuing 3-F8 to hopefully never have to deal with it again. Jake and I will be leaving for NYC on Sunday the 17th. I am going to take a week and Lee is going to take a week. Jake and Luke have a birthday coming up on the 15th and they are very excited of course. They will be 11 years old. Well, thankfully there is not a lot going on right now, but trust me that is a great thing.

Talk to everyone soon,
Kim

Tuesday, September 28, 2004 10:06 PM CDT

What a whirlwind! Jake has been home since Saturday, and we have not slowed down. He feels GREAT, and looks even better. His body is cancer free (yeah)! He went to his boy scout meeting tonight and got his first badge. He went back to school today, they were out for hurricane Jeanne yesterday. I will have Kim post some new pics tomorrow, thanks for all the prayers!

Lee,Kim,Kala,Luke and Jake

Tuesday, September 21, 2004 4:09 PM CDT

7 down 3 to go and believe me we are counting down the days.

Monday was a pretty rough day during 3F-8 and today was a little better. Hopefully, tomorrow will be better as well. We are both ready to be home. Jake is playing in the playroom with the friends he has here; so, that helps him not be so lonely while he is here. We still have not been given all the results from the testing that he had done this time, but all indications are good.

Talk with you soon,
Kim

Saturday, September 18, 2004 3:24 PM CDT

We have made it through the first week of treatment and are just resting getting ready for next week. Hurricane Ivan has made it here to NYC and it is a rainy gloomy day. Although, I don't think it has been as rainy as they have projected, but it is definetly gloomy, windy and cool.
It is suppose to be sunny and 65 degrees tomorrow; so, Jake and I will more than likely go to the Central Park Zoo which is always a fun place to go. He is having a good day just hanging out here at the Ronald House and playing with his buddies.
We have gotten one of Jake's test results back and that was his MIBG which last time showed cancerous activity in his head and left hip and it is all clear this time. No sign of cancerous activity. We did get a prelimenary report on his bone marrow and the first report is that it is clean, but we are still waiting on the final conclusive report. Jake also had a ct scan which we just had on Friday so we have not received any results from it. Thank you all so much for your continued prayers we definetly have a praise that Jake has a clean MIBG, now our prayer is that these treatments will keep the cancer away indefinetly.

Thank you and God Bless,
Kim

Wednesday, September 15, 2004 5:18 PM CDT

7 down and 10 to go!
Jake has been in very good spirits this time and is having pain but seems to be handling it the best he can. Which is amazing if you ask me I know without a doubt that I could not do what he is doing.
He had a great time at the police precinct he was arrested with handcuffs and thrown in the slammer. I do have pictures which I will be sharing as soon as I can.

Thanks again for the continued prayers.

Kim

Saturday, September 11, 2004 5:02 PM CDT

Well, Jake is in the playroom as usual and I am in the room watching the Georgia/South Carolina football game. I have to take advantage of the television when I can because Jake is always watching cartoons if he is in the room.
We arrived safely here in New York at 2:00a.m. Friday morning. Jake had his bone marrow pulls on Friday afternoon and on Friday evening we went to Coney Island to the aquarium with the Ronald House. We also had a famous Nathan's hotdog the home of the famous hotdog eat off ever year. Jake had an MIBG scan first thing this morning and has been playing all afternoon. The house is having a BBQ tonight and playing "The Price is Right". Well, the activities are beginning soon; so, I will talk to everyone tomorrow or the next. Jake and I are touring an NYPD police headquarters tomorrow and going on a ride-a-long. (Pretty cool huh?)

Talk to soon,
KIM

Tuesday, September 7, 2004 2:38 PM CDT

Well, it is almost time. Jake and I are starting to pack all the STUFF we take with us. I am worse than Jake about taking too much stuff with me. I just cannot ever decide what I might need; so, I take it all. I seem to be very nervouse about flying this time; so, please keep us in your prayers we are leaving Thursday around 7:00 p.m.

Jake is becoming old hat at this. He doesn't seem too upset about having to go back and start all over again with treatment, which is good. He is through with acutane which really dried out his lips and sometimes he had a hard time eating, but hopefully will get better soon. He will be off of it for about four weeks and will have to start again. He did have a few mood swings, but nothing too dramatic. Well, thank you all for your prayers and I will be back in touch. Oh yea, Jake will be having all of his base line tests to see where or how much cancer if any is left after two rounds of 3F8 while we are up in New York City.

Saturday, August 28, 2004 9:32 PM CDT

Jake is doing great! He has been on Accutane for 6 days and had minimal issues. Today his lips begin to chap and dry out, but that has been the only side effect so far. He had a good week at school, he has been playing with buddies and he and Luke played in the water all afternoon. He and Kim are returning to NYC on September 9th. He will start round 3 of antibodies and get scans done to see if it is working.

Lee

Sunday, August 22, 2004 9:37 PM CDT

It is great to be home. Jake is returning to school tomorrow, and he is nervous. He will start a drug called Accutane tomorrow. It has worked well in fighting NB cancer in many children. It, like most cancer fighting drugs, has side effects, dry skin and chapped libs are the most common, it can also cause mood swings. He will be home until September 9th, then Kim and he will go back for round 3 and some scans. The scans will determine how well the treatments have worked.

Lee

Friday, August 20, 2004 11:56 AM CDT

We have finished round 2! Yeah!! Jake is sitting beside me in the computer room at the Ronald playing games! Our flight leaves @ 5:00 this afternoon and we can not wait.Jake will be swimming this weekend and returning to school on Monday. Thanks to everyone for all your prayers.

Lee

Wednesday, August 18, 2004 9:52 AM CDT

Another day behind us! He is sleeping off the effects now. We have 2 more days to go and it can't happen fast enough. Jake is ready to go to school, see his buddies, and swim. We will have to come back on September 9th for round 3 and we will redo all of our scans. Jake is clean of cancer everywhere except 1 bone. Hopefully the 2 rounds of antibodys have cleaned up the bone.

Lee

Monday, August 16, 2004 8:19 AM CDT

We had a great weekend. My mom came up and we went all over NYC. I would like to thank all of the people that work with mom for helping her to get up here this weekend. It is back to "work" today as we do our last five days of 3F-8 for this round. Please continue to pray for things to continue smoothly.

Thanks for all of your support.

Kim and I would also like to thank all of the people who worked so unselfishly to make the golf benefit for Jake and Rett such a success. We are so grateful for all of our friends who have helped to ease the burdon of cancer fighting. Thanks again!

Thursday, August 12, 2004 3:08 PM CDT

4 days down,6 to go. Jake is feeling better. The treatment is different each day. He has to start a drug called Accutane when we get home. The main side effect is dry skin. This should be no big deal, we will coate him in lotion and go forward. I can not say enough good things about Sloan Kettering, the doctors, nurses, and the staff are the most knowledgeable people in the world about NB. Even though the treatment is tough, I still feel 100% we are in the right place. We will get the weekend off and it can not come soon enough. Thanks to everyone for viewing Jake's Page and I will keep it updated.

Lee

Tuesday, August 10, 2004 3:53 PM CDT

We started antibody treatment yesterday. Day 1 was great! Everything went smooth, Jake only needed 1 pain med to get through the day. However, day 2 has been intense. Every day is different and I am glad to get this one behind us. We are hanging out at the Ronald House resting for day 3. Thanks for all of the support, I will keep updating as things change.

Lee

Friday, August 6, 2004 11:40 AM CDT

I just wanted to give an update on Jake. He is in New York now. He had to go back on Wednesday of this week even though his treatment is not starting until Monday. Jake had an issue last time with his heart rate not staying elevated enough during the precedure. In other words he is tolerating the pain too well and they want to know why. On Thursday of this week he had an echocardiagram and a nuclear test called "MUGA". We got the results of those tests today and they did not find anything wrong. Now he has to meet with the cardiologist on Monday and he has to wear a portable heart monitor for 24 hours to check what his heart does during and after treatment; so, I guess we will have more answers come Tuesday of next week.

Jake is feeling fine, but he is not very happy about being in New York City without Luke to entertain him. He will get in the swing of things though.

Sunday, August 1, 2004 4:18 PM CDT

We have just arrived back home we went scalloping at Keaton Beach this weekend and Jake had a wonderful time swimming in the ocean.

We have one more week before he and Lee have to return to New York. I'm not ready and I cannot believe it is almost time. They will only have to be there for two weeks which is alot better than four, but Luke will not be able to go because school is starting back on the same day Jake begins his second round of treatment.

Lee and I want to say a special thankyou to all of the people who helped with the golf tournament for Rett and Jake. You all went above and beyond and put so much heart and time into it; so, thankyou so much and we love you all.

Kim

Sunday, July 25, 2004 4:57 PM CDT

We have just arrived home from a weekend in Thomson, Georgia where we were all in a wedding. Lee's brother was married this weekend and we were all able to be there and had a wonderful time. The wedding was amazing and Mr. Jake looked so cute in his Tux I will be adding pictures and soon as we get them. Jake is feeling wonderful and enjoying his time off.

My dad is feeling okay still has a long way to go for recovery, but is doing well.

Thanks again for all the support.
Kim

Sunday, July 18, 2004 8:36 PM CDT

Wow! We have such a great weekend. We have actually had two meals around our table together with all five of us. Jake is feeling great and swimming every second that it has not been raining. It is so good to be home, but strangely enough we miss New York and all of the wonderful friends we have made. Jake is home for three full weeks before he returns to New York for two more weeks of antibodies. The day he is to start the next round is the first day of his fourth grade year at school, but as soon as he gets back he can go straight back to school. This treatment does not wreck his immune system so he can continue with his normal activities.

My dad did well through surgery and actually got to go in a regular room out of ICU tonight; so, he and mom are together tonight. They are hoping that he will be coming home either Tuesday or Wednesday of this upcoming week.

Thanks again for all the prayers and the kind words on the guest book. We all love reading the notes from all our friends and family.

Monday, July 12, 2004 6:54 PM CDT

Today is the beginning of the 2nd week. Jake's antibody treatment went real smooth today. Jake is starting to understand how to cope with the pain and the pain is starting to become less intense. This is a common thing that goes on with antibodies that your body starts to build a resistance to the pain. The Doctor's tell us that he will get to a point where the pain will only last for only 10 to 15 minutes a day.

We are very greatful for all the prayer and all the thoughts. We continue to pray that Jake will continue to do well until we get through this stage of his battle of cancer.

Jake, Luke, and Lee are coming home Friday and we are going to make the most of our three weeks home together.

Sunday, July 11, 2004 3:28 PM CDT

Jake has had a very nice weekend. He was able to go and see a New York Yankee's game with Lee and Luke. Lee said it has been very warm there this weekend the warmest couple of days since they have been there. Jake has not really had any pain this weekend, but we are dealing with the the issue of the pain medication. The pain medication he has been on is addictive and we are having to still give him the pain medication even when he is not in pain to deal with the withdrawal systems that he experiences. Treating cancer is such a catch 22.
Jake will begin another week of antibodies treatment in the morning and then he will have three weeks off. Our family cannot wait to all be together in our own home.

Friday, July 9, 2004 2:22 PM CDT

Jake is having a much better day managing the pain. He got to have his antibody treatment first thing this morning so he is up and feeling better already today. He has not had to have near as much pain medication therefore his mood is much better also. Lee is hoping he will feel like going to Central Park tonight with the Ronald House for a picnic and game playing. The Doctor gave Jake a special pain medication yesterday that helps with the severe pain in his feet and it has worked wonderfully. My prayer is that Jake will have a pain free two days before he begins again on Monday. Have a great weekend and thank you all for your sincere prayers.
Kim

Wednesday, July 7, 2004 7:47 PM EST

Day 2 - Today the intense pain went from 25 minutes to 15 minutes so that was a little better. The pain was still severe, but not quite as bad as yesterday. He is still experiencing severe foot pain and is finding it very difficult to walk. Lee met the head Doctor in charge today and was told that unfortunately this is very common and will more than likely last for another five to six days. Today was better so please pray that tomorrow gets even better.

My dad is scheduled for surgery Thursday the 15th at Emory Hospital in Atlanta. Thank you for all the prayers and concern and please continue to keep him in your prayers also.

Wednesday, July 7, 2004 12:25 PM EST

I cannot begin to express how horrible today's treatment was. All of the families at the Ronald House did their best to prepare us, but there was no way to prepare for what Jake had to go through. The pain lasted for 25 minutes and it seemed like an eternity. There is no way for Lee and I to begin to explain what Jake went through today. I am so thankful that Kala and I decided to stay one more day so I could be there with Jake and Lee. Today was definetly the hardest day that Lee and I have ever experienced, but they promise us that no other day of treatment will be as bad as this first day. I had the hardest time getting on that plane tonight to come home, but Kala and I have just arrived back in Lake Park and I wanted to give everyone and update. Jake has had a very rough afternoon and early evening as well. The pain started getting a little better around 10:30 tonight. When the antibodies are injected into his body the first thing that happens is his body does not recognize it so it automatically starts rejected it which is the first cause of pain. Next the antibodies travel through his body and attach to all of his nerve endings therefore causing unbareable pain all over his body. They gave him four injections of a drug similiar to Moraphin during that 25 minutes and it was like giving him candy. The pain Jake experienced tonight was in his feet where the antibodies has attached to the nerve endings. He has not been able to walk on his feet yet, but he should be able to walk again by the morning and each day will get better and his body starts to recognize it. Please be in prayer for Jake and Lee as he undergoes is 2nd dose which will begin around 12:00 on Wednesday.

Monday, July 5, 2004 1:15 PM CDT

Last night was great!!!!!!! We got to watch the fireworks with the NYPD at a command center that they establish for security purposes for the event. Jake spent the night meeting the officers, having his picture made with them, and collecting their business cards. He also received invitations to come to their precints to take tours which he cannot wait to do. By the time we left last night he was on a first name basis with the officers. The fireworks were amazing also.

Kala and I are flying home this evening and neither one of us want to leave. We have different reasons of course, her for the social part of it and me for wanting to be with Jake when he starts treatment tomorrow. We have made some amazing new friends that we just love and do not want to leave them either. These people become your family while you are here and you want to be with them through their rollercoaster ride also. I know you all have no idea who all is here or their stories, but please say a special prayer for all the children and their families that are staying here at the Ronald House.

Thursday, July 1, 2004 12:11 AM CDT

Everything is going according to schedule with Jake and so far we have had no surpises (that is a good thing). I have had to give Jake the shots he has to have to boost his white cells and so far that has gone smoothly. Luckily, the medicine that we are shooting in him does not burn; so, he doesn't mind the ant bite that he says I have to give him. Lee and Kala will be coming up tomorrow so we can all celebrate the 4th of July together and we are all excited about actually being in the same place at the same time.

Tuesday night a local business put on their annual mini carnival and BBQ here at the Ronald House for all the families and it was a lot of fun. I am going to have to ship back all of the things the boys won. They really go out of their way to make sure the kids are having a great time.

Once again thank you for the continued prayers and support that has been offered to our family. My dad will be having his surgery at Emory on July 15th. Lee and the boys will still be in New York, but are due to come home on the 16th.

Monday, June 28, 2004 3:43 PM CDT

We are having a good time here in New York City. We went to the Central Park Zoo today and had a great time. Jake feels wonderful and we are just hanging out waiting on things to begin. Jake will start his round of shots that he has to take to boost his white cells before antibodies treatment on Wednesday. This is not anything painful and he only has a shot once a day.

Thank you all for the concern for my father. He will be having a meeting with the surgeon on Wednesday of this week and the surgery is going to be performed at Emory in Atlanta. The surgery will more than likely be performed in the next couple of weeks.

Thank you again for your continued prayers for Jake, our family, and my dad.

Thursday, June 24, 2004 11:06AM EST

We are in the program and Jake will begin antibodies treatment on Monday July 5th. They were not able to get the test results in so we could begin this week. This will put us in New York for 4 total weeks. I just spoke with Lee and they are all doing great. They are going to take a trip to Central Park and maybe go to the zoo.

Please continue to keep Jake in your prayers, but if you all could also add my dad to your prayer list. He is having some very serious heart problems at this time. The doctors are trying to get him well enough for open heart surgery. This is a very stressful time for our family trying to be in two places at one time; so, please continue to keep us in your prayers.

Tuesday , June 22, 2004 4:55 eastern

Jake's testing is going well. He has two more tests tomorrow. He will have a CT Scan and a MIBG scan tomorrow morning. Things are looking good that he will be accepted into the program, but it is looking like we will be pushed back a week. This will cause us to be in New York for a total of four weeks. If they are able to get all of the test results in by early afternoon Wednesday we will be allowed to begin on that day, but if everything is not in we will have to wait to begin the next Wednesday. We do like New York and we are meeting so many wonderful people, but we would love to begin this week. Please be in prayer for quick test results. Thank you all.

Wednesday, June 16, 2004 12:24 AM CDT

Jake is feeling great and is having an incredible time at Vacation Bible School this week at our church. He is so excited about seeing his friends and being a normal kid for a change.

Jake, Luke, and Lee will be leaving for New York City this Sunday the 20th for a week of testing to see if we are now eligible for the program. I will be leaving for New York City on the 25th and we will all be there (Kala included)to celebrate the 4th of July in New York City.

Please be in prayer for a little 4 year old boy whose parents are in our Sunday School class who has just been diagnosed with neuroblastoma cancer. This is the same cancer that Jake has.

Friday, June 4, 2004 10:47 AM CDT

Jake has finished his first week of radiation. He will have three more days of treatment next week and then he is done with radiation. The radiation treatment is very minor and only takes about five minutes to do. WE HAVE BEEN GIVEN GREAT NEWS JAKE'S BONE MARROW IS CLEAN!!!!!!!!

We will be leaving for New York on June 20th for a week of tests again and if everything comes back the way we're praying Jake will then begin the antibodies treatment. This will have us in New York for three weeks.

Jake is feeling great and swimming every chance he gets. He will get to go to Vacation Bible School at our church the week of June 13th and he is looking forward to seeing all of his friends.

Friday, May 21, 2004 3:07 PM CDT

We are having a great time and we have seen a lot of great things. We do have an update on Jake. We will be doing one more round of chemo in Atlanta along with 10 cycles of radiation. The chemo is starting this Sunday; so, unfortunately Jake will miss his last two days of school. We will head back to New York in four weeks to do the same week of testing that we just completed and we should be able to start the antibody treatment after those tests if all goes well. Thank you for your continued prayers and kind words.

Wednesday, May 19, 2004 10:55 AM CDT

Hey everyone,
Thank you all so much for all the notes. Jake loved getting them. We are having a nice time here in New York. Everything is going well at the hospital and we may even have an answer by Friday. We are going to TimeSquare and the Empire State Building tonight and we are all very excited. It is raining today, but of course that doesn't slow New York down. So far, Jake's favorite part of New York has been all of the dogs in the city. All shapes, sizes, and colors. Once again thankyou so much for the notes. See you all soon.

Monday, May 17, 2004 8:25 AM CDT

We are headed to New York City. Jake is going up for an evauleation. He feels great! This will be a few test that they(NYC doctors)will do to see what the cancer is doing. Then, we will wait for 2 weeks and see if he quailifys for the immununeotherapy program. This week we are all going to go, so that should be exciting. We are going to stay in the Ronald Mcdonald house. I will update the page when we return

Wednesday, April 14, 2004 9:08 AM CDT

We go back to Atlanta on Monday,4-19. This will be our 2nd round of high dose chemo. Jake is feeling good over all. We had a fought with high fever and nose bleeds last week, but other than that it has been pretty smooth. We hope to be in the hospital for only 2 nights next week and in the clinic the rest of the week. It seems to be easier when we are not locked down in a hospital room. I will let everyone know when we are headed to NYC.

Thanks for your prayer,

Lee,Kim,Kala,Luke and JAKE

Monday, March 15, 2004 9:23 AM CST

We have had a call from our Doctor in Atlanta this weekend. He has reassured me that his is the best possible solution to our problem. We are going to start high dose chemo on Monday March 22. If we stay on schedule we will be going to NYC on Sunday May 9th. I will keep everyone informed as it changes.

Lee

Thursday, March 11, 2004 9:32 AM CST

Finally, we have heard from the Doctor in New York. I am not sure I like what he had to say. The treatment in NYC requires Jake's body to be totally wrecked. That means we would have to spend April and MAy in Atlanta undergoing high dose in-patiant chemical chemo. He would lose his hair,throw up constantly and miss the last part of his school year. Once his body is wrecked, we would do 4 cycles in NYC of antibody treatment. This would be 1 week in Nyc and 8 weeks in Valdosta over a 36 week period. I have emailed Dr. B in Atlanta to ask for his advice. Please pray that God will give us the peace and guidence to make the best decsion for Jake in this situation.

Lee,Kim, Kala, Luke, Jake

Wednesday, March 10, 2004 1:10 PM CST

Jake is still doing great. He had his hair cut last friday for the first time since last October. We still have not heard from the hospital in New York. I emailed our Doctor in Atlanta yesterday, but no response back yet. Thanks for all of your prayers and thoughts.

Lee, Kim, Kala, Luke, and Jake

Friday, January 30, 2004 10:34 AM CST

Jake is doing great! He just finished round 4 of chemo at Atlanta and his cancer is on the run. He was tested last week and his scans looked great. His cancer is broke up and scattered, which is good. We are ready to take a new step in the fight. It looks like we are going to Sloan
Kettering hospital in New York City. The doctors are reviewing his history and should get back with us in the middle of Febuary. Once a final decsion has been made I will let everyone know. Thank you for your continued prayer.

Thursday, November 27, 2003 10:21 AM CST

Thanksgiving morning has been great! Jake feels good and went on his first dove hunt of the year. Sunday Kim and Jake are going back to Atlanta for round 2 of chemo. We hope this round goes as smooth as round 1.

Thursday, November 20, 2003 8:32 AM CST

We had Jake's first blood work yesterday. It looks good. The process went much smoother than I thought. We are working with our local peditrician here in Valdosta and using South Georgia Medical Center to do the lab work. They fax the results to our Doctors in Atlanta and I get a copy faxed back to me. It sounds complicated, but it worked. Thank you for your continued love and prayer.

Sunday, November 16, 2003 12:53est

Today Jake feels great! He is at home and playing games. His first round of chemo ended yesterday and he has had very little problems. He will be home for 2 weeks and then we go back to Atlanta for round 2.Thanks for all the prayer!

Friday, November 14, 2003 7:45 AM CST

Jake is doing well. He is in good spirits. He has 2 more days of chemo in Atlanta and then he is coming home. We will spend 2 weeks in Valdosta and then head back.

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