History

Sunday, April 8, 2012 5:08 PM CDT

Happy Easter to everyone. We are taking comfort in knowing that Jake is celebrating with Jesus today.

We miss Jake more everyday as life brings changes we can't help but be selfish and wish Jake were here to share in the everyday of life. Kala will be graduating from college this summer and Luke from high school this May. Every new celebration is bittersweet.

Thank you for your continued support.

Kim

Tuesday, July 12, 2011 8:47 PM CDT

We are taking things one day at a time. We are missing Jake terribly. Most days I come home and still think he is going to be sitting on the couch watching some tv show he just couldn't live without. The constant reassurance that he is no longer in pain is what keeps Lee and I both going. We are both still trying to figure out what to do with ourselves, but like I said one day at a time.

Thank you to all of those who are still checking in on us and praying for our family.

Kim

Tuesday, May 17, 2011 2:42 AM CDT

We are home. Jake's passing has been a difficult time for us all. We have all fought so hard for so long it is hard to believe it is over. Jake' s memorial service will be this Thursday May 19th at 4 o'clock at Perimeter Road baptist in Valdosta, Ga.

Tuesday, May 17, 2011 2:42 AM CDT

Friday, May 13, 2011 7:54 PM CDT

Jake Miller. 10/15/1993-05/13/2011. You fought the good fight. We love you and will forever miss you.

Friday, May 13, 2011 7:06 AM CDT

Jake has fought with such strength and courage through the years and it breaks my heart to write this, but there is nothing else we can do. This morning at about 2:00 he started bleeding internally. He is pretty much bleeding everywhere and there is not anything we can do to stop it. They are continuing to replace blood products and it try to balance out the substance in your blood that will help it to clot. At this time the goal is to keep him sedated and completely pain free. Thank you so much to everyone for the countless prayers throughout this journey.

Jake is my borrowed angel.

I love you Jake!

Thank you again for all of the love and support.

Thursday, May 12, 2011 7:14 AM CDT

Jake had his best night yet. He had his most stable conditions as of yet. He has put out a little over 7 liters on the dialysis machine which is wonderful. That is about 7 kilo's that have been taken off of him in a little over 24 hours. We are continuing on the course and getting a little better everyday. He is still a very sick little boy, but we are inching a little better everyday. At this point that is all we can ask for and in the words of one of his picu doctors "I'll take it".

Go team Jake!!

Kim

Wednesday, May 11, 2011 9:49 AM CDT

Sorry for the lack of updates.. Lee has been updating so much on facebook that I forget sometimes to get this site updated as well. Jake has had a busy last couple of days trying to get lines in to be able to perform some treatments that will help in his recovery. We are making head way with the fungal infection. White cells are better, but not great. Jake had six white cell transfusions, but those have stopped for the moment. Jake now has a line in his neck that they are performing bedside dialysis with to try very hard to get the extra fluid that has accumulated in his body. Jake has an extra 40 to 50 pounds of fluid at this time. They have also installed two lines into his kidneys to help drain anything off that cannot cycle through his bladder. Jake is still on a ventilator on very low settings. They want him to stay on until they can remove this excess fluid; they want to make sure that they do not do anything to soon that might add to his healing. If I had a nickel for every time we have heard or said "slow and steady" I would be wealthy woman.
The support from the nurses and doctors has been overwhelming. We have had so many visits from our nurses from Sloan. It has done our hearts good to feel all of the love from the people who have treated Jake through the years up here. The staff here at New York Presbyterian has been amazing. I had a nurse tell me this morning how amazed she is at all of the support that we are getting. She told me that it is amazing how many nurses come from other rooms just to see what they can do to help. She said that doesn't happen in the magnitude that Jake is getting. This does our heart good. Everyone comes in to tell us that they are on "Team Jake". It is truly amazing how many people want to be a part of it. We are very blessed.

Kim

Sunday, May 8, 2011 8:20 AM CDT

Happy Mother's Day!

Jake has had a good night. We had to raise his blood pressure medicine slightly after a procedure was attempted yesterday. The pressers are back down to where they were before the procedure which was our goal for the night.
Jake has been loaded with tons and tons of fluids since we have been here and he is not getting rid of as much as we would like. He is retaining fluid in his legs, arms, and chest. Please help us in praying that his kidneys will find a way to keep up and start getting rid of some of this excess fluid. They did put in a drain in his side on the right to rid his chest to help with some of the removal. That was the procedure that they attempted to do on the left side yesterday that failed. Jake has made remarkable progress, but he still has a long way to go. We are taking things one day at a time and sometimes one minute at a time.
Thank you all for the support it has meant the world to our family. We are a long way from home, but your support has encouraged us that we are not alone in this fight.

Love to you all,
Kim

Friday, May 6, 2011 8:31 AM CDT

Baby steps in the right direction continue. Jake is still in critical condition, but he is in typical "Jake form" amazing the doctors here at NYP. He has been stepped down on his blood pressure meds to a "whiff" of medication as her docotr stated this morning. His liver enzymes have fallen to 117 over the last 24 hours and his blood pressure has remained in the 110/60 range for the last 20 hours. He is getting white blood cell transfusion and this morning his WBC is 1.6. The goal of the day is to continue lowering his life support needs and allow his own body to operate independantly on its' own. Thank you for all the prayer and I look forward to updating again later today with continued good news.
lee

Thursday, May 5, 2011 10:14 PM CDT

Jake is making slow and steady progress. He is getting his 2nd round of white blood cells tonight. The ones he got last night gave him a boost to 1.5 in the first 4 hours, but fell back to .5 after 24 hours. The plan is to give him a total of 5 of these transfusions or stablize his white cells to 2.0, whichever comes first. The lactic acid levels are holding in the 3's and his blood pressure is now in the 120/70 range. He has been able to take things back over with his own body and the life support has been decreased to about 40% of what it was 24 hours ago. We need to continue to improve over the next 2 days and we should be able to wake him up. Right now he is sedated to allow all of the care to be done without any interferance by him. The goal is to stablize his normal body functions 1st and then let him resume on his own. I can not express my graditude for all of the Prayer from everyone and the constant care from NY Presbyterian hospital. I will update again tomorrow.

Lee

Thursday, May 5, 2011 1:05 AM CDT

What an amazing medical experiance. Jake is still in Critical condition, but he is making steps in the right direction. Last week Dr. Basu at MSKCC suggested a transfusion of white cells to help him fight off this terrible fungus and boost his own white cells to stabilize his immune system. In almost 10 years of fighting this terrible NB cancer, Jake has always been able to bounce back after chemo and get his white cells back. But this time it just was not happening. I did not know that White cells could be transfused, but I was very interested. There are dangers to doing this. The main concern last Friday was that the fungus was in his lungs and the "rush" of new white cells would attack the fungus in his lungs and cause them to collapse. It takes 48 hours to "mobilixze" the white cells so we started. Jake went into Septic Shock on Sunday morning and we were transfered to the ICU at NY Presbyterian. In this transfer and the shock the white cell transfusion was put on the back burner due to many other immediate problems the shock had brought on. On Monday I had a conferance with the Attending Doctor here at NYP, Dr. J, and Dr. Kushner from MSKCC. In this conferance I inquired about the white cell transfusion and the lung problem was brought up. We had to put Jake in a coma on Monday to try and slow down the shock of his body which included a ventalator for his breathing. The ventalator took the lung problem out of the equation and made the white cell transfusion even more attractive. But, we lost the window of oppurtunity because we were past the 48 hour mobilization window. So, we started again and he recieved the white cells last night at 6:30. This morning at 12:30 they ran a CBC and he now has 1.5 White cells in his blood!!! This is a great step in fighting fungus. It will be able to assist the anti-fungul meds and boost their ability to kill the fungus. He had no problems with his lungs and his lactic acid is continueing to fall. I am very hopeful that he will be able to come out of his coma in a few short days and continue to recover and fight the fungus off. Thank you for all of the prayer because without God this miracle would not have been possible. I will update later today with how the fight is going.

Lee

Wednesday, May 4, 2011 6:35 AM CDT

Jake continues to fight. The life support he has needed over the last couple of days is becoming less, this means his body is getting stronger and able to take back over. The fungus infection fighting is on the horizon. The fungus is very involved in his body, he has not had white cells so there has been nothing to fight with. In the coming days, he will have white cells and the fight in his body will be tough. He is still very critical please pray for continued healing.

Lee

Tuesday, May 3, 2011 12:47 AM CDT

Jake update: His blood pressure is slowly coming up. He is still very critical but has made small baby steps in the right direction. We have a long way to go but i am thankful for all of the prayer and support. Keep praying for Stability.

Lee

Monday, May 2, 2011 6:15 PM CDT

Jake update 2: Let me review Jake's situation, He is in the ICU at NYC Presbyterian, He is in Septic Shock, he has a Fungal infection in his body and he is on life support. First of all I need to say thank you for all of the prayer, in times like this God is the great physician. We need a God to touch and heal Jake. The ICU here has been great to work with, they have worked tirelessly to comfort Jake and to help him. Septic shock is a dangerous place to be, your body starts losing it's ability to function without the help from the ICU. The fungal infection is in Jake's blood stream, liver, lungs and skin. They have figured out what type it is and have changed his meds to kill this type. This is a long process and it will take life support to allow the meds to work. He is getting blood pressure meds to keep his heart pumping right now. The fungus is negatively affecting his blood flow and he needs support to continue. The Doctor here suggested we put Jake on a ventalator today. He was breathing fine on his own, but Dr J wanted to treat Jake like a trauma car victim. By assisting his breathing his body could "calm down" and focus more energy on fighting the fungus. It was a hard decision but I think it was best. Please pray for God's intervention and allow this med to work immediately and help Jake through this process.

Lee

Monday, May 2, 2011 1:22 PM CDT

Very hard to say what has happened today. Jake is starting to build up lactic acid. It could be because of the meds he is on, it could be his body dieing. The doctor has asked me to allow her to put him in a coma. This will allow his body to better fight with the energy he has focused on fighting the fungus. It was a hard thing to do because we will not be able to comunucate with him now. I am very angry that we are in the situatiion we are. I wish I could fix him without the coma but I can not. Pray this works and his coma is only for a few days and he finds the strenght to come back to me.

Monday, May 2, 2011 6:20 AM CDT

In the last 24 hours we have been moved from MSKCC to New York Presbyterian ICU. Jake's fungal infection has put him in critical condition. In 10 years of fighting NB cancer this is the first time he has been in ICU. He is getting the best care in the world here. His white cells are starting to move in the right direction. He is on blood pressure meds to increase his pressure. He is on anti-fungal meds to fight over the fungus that is all over his organs. He has 3 different procedures yesterday that were very intense. Today is a new day, he is much more alert and responsive. We are hopeful for more white cell production and stabilizing his blood pressure.

Lee

Saturday, April 30, 2011 9:36 AM CDT

All of the years of fight cancer one of my biggest concerns has been secondary problems from the treatments themselves. I am very concerned and heart broken. Jake has a fungal infection in his liver, lungs, and Kidneys. He has no white blood cells and no way of defending his self. It is aggrevating to be in this situation. I am waiting on a Internal Disease doctor to come in today and offer suggestions. I can not believe we are in this situation. It is time to fight for his life. The next few hours are critical. If his own body produces white cells that would be the best medicine, Pray for things to turn around,

Lee

Wednesday, April 27, 2011 3:24 PM CDT

Still waiting on white cells. His creatine is also very high. He has not had food in 3 weeks either. They are starting TPN tomorrow, we are meeting with a new doctor today about the creatine, and he is getting double g-csf to boost the white cells. It is very hard to sit here and watch him right now. He is resting well, but I don't like it when he is lifeless. He sleeps in 4 hour blocks and gets up to go to the restroom, throws up, hit the pca pain pump and sleeps for 4 hours more. I will update as things turn around, Lee

Monday, April 25, 2011 7:19 PM CDT

We are slowly recovering! Through the years of doing this the best marker for measuring Jake's cancer has been LDH, Yesterday, Easter Sunday, his LDH was NORMAL for the first time in a long time. This is great news. His liver is perfect also. He is no longer having cancer pain! He still has no white cells and has a lot of mouth sores that go all the way down to his stomach that are still causing pain and his legs are sore from laying in the bed for 3 weeks. Hopefully his white cells will return soon and when they do he will be able to get rid of the sores. We will stay in patient here in NYC until he recovers. My hope is to be going to St Jude this weekend, but if it takes more time so be it. I will update again as things get better.

Lee

Saturday, April 23, 2011 7:10 PM CDT

Jake is still sleeping most of the time. The pain is slowly going away but it will not completely stop. His white cells are not back at all yet. He is being watched closely and we are glad to be in NYC. I do miss being in Valdosta for Easter and baseball, but I know that it is best we are here. I hope his counts return in the next couple of days and we are packing up to head to Memphis. It has been a long journey, but I know God has a specific plan for Jake. Continue to pray for healing and recovery. Happy Easter!

Lee

Thursday, April 21, 2011 12:57 AM CDT

We are now in NYC. Jake had 5 days of chemo last week in Orlando. He was in pain from the cancer. The cancer was spreading quickly and causing lots of pain. The chemo took care of most of his pain but not all of it. He is here in NYC to help him recover. We are in the hospital here and they are monitoring him around the clock. He is sleeping mostly and resting. My hope is that once his white cells come back in a few days the pain will go away. The plan is to recover here over the next week and then head back to St Jude. Please continue to pray for his recovery.

Lee

Tuesday, April 12, 2011 5:50 PM CDT

Day 2 of Chemo is behind us and he is starting to feel better. The intense pain from the cancer spreading is slowing down. He still has pain, but it is much less and slowly he is recovering. We have 3 more days of Chemo here in Orlando and then we head home. We are hoping to get out of the hospital tomorrow and work through the clinic the rest of the week. Thank you Lord for helping him through this time. The plan as of now is to recover at home over the next three weeks with transfusions, fluid, and G-csf. In three weeks we will check his ANC and liver enzymes and if things look good head back to St. Jude. I will let everyone know how he does over the next few days.

Lee

Monday, April 11, 2011 12:19 AM CDT

WE are in Orlando now. We left SGMC this morning at 6 A.M. and drove down. It was a rough ride due to the amount of pain Jake is in. His cancer has become very active in his spine and neck. He is very uncomfortable. We started chemo this morning and pain meds and hope to get him some relief ASAP. He is sleeping now and we will go inpatient this afternoon to monitor his pain. I will update again as things get under control.

Lee

Wednesday, April 6, 2011 11:16 AM CDT

Starting to put a plan together. We are going to Orlando on Monday and do another round of Irrono/temadore. Jake has had this chemo many times in the past. It usually works for a cycle or two to keep things in check. At this point the hope is to keep him stable until his liver enzymes can come down and continue to search for the best treatment. Pray for wisdom over the next few days and that God will lay out the path clearly for us.

Lee

Monday, April 4, 2011 12:59 AM CDT

Liver enzymes were 128, too high for the human antibody treatment. Not sure what is next, Jake and I are headed home to regroup.

Lee

Thursday, March 31, 2011 4:05 PM CDT

Dr. Santana has informed us that Jake's Liver enzymes are too high for the treatment here at St Jude. His liver level was 155 on Sunday when we got here, and is at 138 today. It has to be below 100 to start the treatment. We are going to do some more fluids and recheck him on Monday. If the level gets below 100, he will start the treatment then, if it stays above 100 we have to go home. St Jude will not treat him with high liver enzymes. I am a little frustrated and Jake is a little angry. We want him to feel better and beat this cancer. We both have emotionally placed a lot of faith in this human antibody treatment, but we both have to trust that God has his hand on this. If his levels come down it was meant to be, if not God will show us another way.

Lee

Monday, March 28, 2011 4:29 PM CDT

We are here! It has been a long and exhausting day. Jake will have a "checklist" of markers to hit before he can qualify for the human antibody trial. I thought he was good on all of them, but I was wrong. His liver enzymes are too high as of today. He is close, but not where he needs to be. We are going to get a bag of fluids and try to bring them down. He will have a series of test over the next 3 days and we have until thursday to bring the liver enzymes down. Pray for God to allow this to work or show us his plan. I will update again as things change.

Lee

Thursday, March 24, 2011 4:21 PM CDT

We are getting closer! I have spoken with St Jude every day this week. We are going there on Monday March 28th for a series of test. Jake will have 3 days of various test and IF he qualifies, he will start the SJGD2 antibody next Thursday! We are very close and very excited. Jake and I are driving up this weekend. He is ready to go. He started packing his bag this morning! I will update as things start happening next week. We are meeting with a Dr. Santana at 10 a.m. on Monday. He has been fighting NB cancer for over 32 years. He has published over 100 articles on NB canacer and I can't wait to meet him. Pray for the right results from the test and we get started on Thursday.

Lee

Monday, March 21, 2011 1:36 PM CDT

7 more days until the opening at St Jude. I have emailed Dr. Navid this morning and asked for a final check list to qualify. I will be faxing some reports tomorrow and Dr. Eslin is also sending some info from Orlando. We will hopefully know something in the next couple of days. I will update as soon as the final word comes to me. Please pray for God's will in this decision.

Lee

Thursday, March 17, 2011 4:09 PM CDT

Jake is in-patient at SGMC. Last Thursday, 7 days ago, his hematurea (bleeding bladder) started again. His blood is dropping quick, partly because of the chemo he finished 10 days ago, partly due to the bleeding in his bladder. The combo of the 2 problems has greatly increased his problem. He has had a procedure 2 times in the last 6 months to fix the bladder temporarily. We tried the procedure here in Valdosta yesterday for a third time, but it did not work. Now we are pouring the fluids, blood, and platelets to him hoping his body will "catch up" and fix this problem on it's on. We are still trying to get to St Jude. He did some baseline test today to fax to them. I am going to get the results of the test and fax them to St Jude tomorrow. We will know something in the next few days. My hope and prayer is the bleeding can stop on it's on soon and the test are good enough for St Jude to give us the go ahead for Monday March 28th. I will post when I know more.

Lee

Tuesday, March 15, 2011 12:56 AM CDT

Another day of fighting. Jake is currently at SGMC getting more blood and platelets. The chemo he had 2 weeks ago is starting to not have much affect on the cancer. His legs are begining to hurt again and he is not feeling well. His white count is still low and he is starting to develop a low grade fever. The bladder bleeding has become worse than ever before. It is time for a 3rd scope procedure. We are trying to see if there is anyone here in Valdosta that can do it, if not we will head back to NYC to get him done. Still no word from St Jude, I did get an email from the doctor last week from there with a date of March 28th for their next opening, but I have not heard yet if Jake will qualify. Please pray for God to put everything in the right place and have the timeing of this work out for Jake.

Lee

Thursday, March 10, 2011 12:24 AM CST

Jake is in Recovery mode. We are home, which is great, and spending most of the day at SGMC. He is in need of daily transfusions, which is to be expected this week, he is getting fluids and just hanging out. Things will change next week. We will be doing some test to see if he can qualify for St Jude. Please pray for good results and a smooth transition to them. This weekend we are traveling to Atlanta to watch Luke play baseball. Jake should be fine, we are going to "tank" him up tomorrow morning and we will be returning on Saturday. I will update again once we get a testing schedule for next week.

Lee

Monday, March 7, 2011 12:23 AM CST

Jake's pain is much better. We are getting "tanked up" today and heading home tonight. We will recover at home over the next few days. He is feeling much, much better. The irrono/temadore has worked in giving him some relief. I got an email yesterday from ST Jude. It said they will have an opening for the human antibody treatment on March 28th. We are working very hard to get in that treatment. Please pray that Jake gets into that treatment. We have worked very hard to get there, and now is the most critical time. He will have to do some testing over the next couple of weeks. Pray all the testing goes well.

Lee

Wednesday, March 2, 2011 12:24 AM CST

The "plan is now in place. We arrived in NYC yesterday. We met with Dr. Kushner and he asked "what do you want us to do"? I asked for some relief for Jake first, he has leg pain from the NB and is not able to walk. I asked for help in getting us to St Jude to take part in their human antibody trial. He said okay and today we are starting Irrono/temadore. The plan is to finish irrono on Friday and Temadore on Sunday. We will get a MIBG scan next week here, then possibly some spot radiation. Dr. Kushner is going to contact St. Jude and offically start the process to refer Jake. The next opening will be in April and we will see if we can get in. I will update as things change, which they will.

Lee

Sunday, February 27, 2011 11:33 PM CST

We are at SGMC tonight. Jake, Kim and I went to visit Kala this weekend for Family weekend at West Georgia University. It was a lot of fun. Jake was glad to spend some time with his sister. On the way home today, he started feeling bad. His foot pain was terrible and we had NO pain medication. It was a long trip home. We got to the hospital at 6 and ran a CBC. Jake's hematuria has returned and he is loosing a tremendous about of blood. His hemo had dropped to 4.4. He has a broken blood vessel in his bladder. It has been repaired 2 times over the last 6 months with surgery. It looks like it is time for number 3 . I have emailed Dr. Kushner in NYC to ask for permission to travel this week to see him. Ideally, we would go up on Tuesday and do the surgery on Wednesday. I have found a new treatment possibility also tonight. It is being done at CHOP in Philly. My hope is we can fix the bleeding first and then bus to CHOP and enroll in this new treatment quickly. Please continue to pray for God to open doors. Jake is starting to resist new therapies.He is becoming tired of getting his hopes up and nothing good happening. Pray for a renewed spirit to believe God is going to allow him to be healed. I will update as things fall into place.

Tuesday, February 22, 2011 12:29 AM CST

Waiting, waiting, waiting. We do not have a plan, we do not know what is next, and we do not know where next will be. One of the hardest things about fighting this terrible beast, is when you don't know what to do. A friend of mine sent me a note about the Isrealites, the note talked about God allowing his "chosen people" to be enslaved for 400 years, beaten, tormented and then one day Moses led his people out of Egypt with the Egyptian army on their heels. When they got to the Red Sea, it looked as though God had forsaken them. The Red Sea in front of them, the Egyptian army behind them. That is exactly how I feel. We have been in this fight for 10 years, and we are at the Red Sea now. Like the Isrealites, I feel overwhelmed when I look at the "Red Sea" in front of me. But, I trust in the Lord to part that sea and deliver us from our bondage. I will update again once the Sea begins to part.

Lee

Thursday, February 17, 2011 9:14 AM CST

Scan results are back, Jake has new areas of cancer. He has progressed on the TPI treatment, that means we are done with that. I am not sure what is next, I am in contact with a couple of different hospitals and checking all of our options. The good news is JAke's LDH continues to drop and he has minimal pain. I will update as things come together.

Tuesday, February 15, 2011 3:03 PM CST

Another round of TPI is behind us. The foot pain continues to be a problem. His LDH has dropped to 276, better but not where it needs to be yet. We are in Orlando and waiting to do a mibg scan tomorrow at 8 am. Depending on the results, he will either continue TPI or we will look for something else. I will update again once I have scan results.

Lee

Thursday, February 10, 2011 11:49 AM CST

Jake's LDH level continues to drop! It is down to 305, 150 to 200 is normal. His foot pain is getting better. It is still there, but it is much better. The newest pain med is slowly working. He is at SGMC today in Valdosta. His platelets and whole blood continue to drop, but it is more of a drop from the chemo. He will get a transfusion of each today and should be in good shape for a couple of days. We will go back to Orlando on Monday and get another round of TPI and then scans are set for Wednesday. Please pray for good scans and continued healing.

Lee

Tuesday, February 8, 2011 12:11 AM CST

Jake continues to have severe pain in his feet. We have switched to another type of pain med, but it will be a couple of days before we know if it is working. His ldh level has dropped to 362, it is still not in the normal range, but a drop is much better than a rise. We are going to do a mibg scan next Wednesday here in Orlando. The scan will allow us to determine the extent of the cancer. We are going home today and managing his pain from home. We will return next week for treatment and scans. Jake does not qualify for the human antibodies at St Jude. We will continue to watch this treatment and if he meets the criteria in the future we will try again. It is very frustrating trying to make these types of decisions, but it has been a part of the process since day 1.

Lee

Monday, February 7, 2011 1:01 PM CST

POLITICAL CORRECTNESS! In the world we live in today you have to be careful with every thing you do. First of all, I am very grateful to be in Orlando at AP doing TPI287 for my son Jake. At a time when Sloan Kettering had nothing else to offer, Atlanta refused to help, St Jude had no openings, Arnold Palmer welcomed us with open arms. However, we knew that this was a very experimental trial, we knew that we had no insurance to pay for it, we knew that this hospital did not have a specialist in the field of neuorblastoma, and we knew that this would only be temporary. However, let me say very clearly,(PC) I am very grateful for the time we have spent in Orlando. (seriously).
Time for a change- JAke has shown signs of progression of cancer in the last week. He has had pain, which is a indicator for him. I am trying to find a "better" alternative. I am trying not to burn any bridges, cause any problems, but the bottom line is we need a miracle. On paper, I think I have found the magic bullet, the magic pill, the thing that will once and for all kill the NB and provide Jake with a healthy and enjoyable life.
What can you do? Pray, Pray, Pray. This magic treatment is only availible at ST. Jude in Memphis, it is called HU14.18k322A. The drug is being used in a phase 1 trial. They are taking 3 kids at a time, waiting 28 days and taking 3 more. There are many children that need this and many parents and doctors that are begging for it. They have 1 opening today, if Jake gets it, we would go immediately, if not we will have to wait 28 days with no treatment and ask again. I have emailed the doctor in memphis asking for this last slot, his name is Furman, Dr. Eslin here in Orlando has exchanged emails with the clinical nurse, so we are waiting.

lee

Saturday, February 5, 2011 3:02 PM CST

HOME! We are not there yet, but we are close. Jake is sleeping off the meds and getting red blood. He should finish around 6 tonight and we are running to the house. He has been in patient since Monday and is ready for some home time. The Chemo started yesterday, he will continue to take chemo pills over the next 3 days. Jake does not have traditional insurance, so we have to work with what we got. He will need oral temadore to go home tonight to take tomorrow. The hospital does not dispense chemo to take home, so we have to get it locally from our pharmacy in Valdosta. Jake needs 130 mg of temadore. Temadore is packaged in pills of 5 mg, 20 mg and 100 mg. He has been taking 1 100, 1 20, and 2 5 here at Arnold Palmer Hospital. To get the same 4 pills from our pharmacy the cost is $1000 for 1 days dose,( we are coming back on Monday to the hospital and can get Monday and Tuesday here) Or we can get 26 of the 5 mg of temadore for $300. I know it is crazy, but it is another example of what we do. Jake will take 26 pills tomorrow to get the dose he needs. Oh well, at least he gets to come home for a day. I think being home will be good medicine for him. We will find out if this is working next week and I will let everyone know.

Lee

Friday, February 4, 2011 10:56 AM CST

Jake's pain is being controled by a pain patch. It seems to be working well so far. He has started chemo today in Orlando. He is getting TPI and Temadore. He may get to come home today or tomorrow. His blood counts are low, and it depends on how soon he gets blood today. The paln is to go back on Monday and check his LDH level and see if TPI is working. Please pray for a good and immediate response. If it is not working, we will adjust the chemo to something else. I will update on Monday with the results.

Lee

Wednesday, February 2, 2011 9:42 AM CST

The FEAR of the unknown. Jake had a large blood clot in his bladder removed yesterday. The procedure went well. However, the pain he has had in his back since last week is still there. Possibly the pain is a direct result of the clot and clot removal, possibly the pain is NB cancer raging in his spine. I am not sure, and neither is the Doctor. I do not like not knowing. He has not had a mibg scan since last December, and the doctor does not want to do one at this time. If it is NB cancer I am not sure what can be done. The TPI -287 chemo he is getting now has not been given in 2 weeks. Could it be change to something more aggresive? This is the first time in 7 years we are having to adjust to the fight without the team from Sloan advising us and I am concerned. I hope Dr. Eslin here in Orlando is up to the task. I spoke with him this morning about my concerns. This has been a long ten years of fighting, I feel like we have managed to continue the fight by being flexible and making the adjustments quickly, I do not want to panic, but I do want immediate action. Jake is getting pain meds every 4 hours to cope with the pain, but I am looking for a treatment to eliminate the pain. Please pray for my patience and the doctors ability to make the correct choice swiftly.

Lee

Monday, January 31, 2011 7:13 PM CST

Jake has developed a very large blood clot in his bladder and it is backing up in his left kidney causing severe pain. He and Lee are in Orlando and they have admitted him there. Lee is waiting to here from the urologist in how exactly the blood clot is going to be removed. Jake's whole blood was very low and he is receiving two units tonight. I will be heading down to Orlando in the morning. Please keep us in your prayers- Jake is in a great deal of pain right now. If any of you have ever had kidney stones I imagine this is very similar pain.

Kim

Tuesday, January 25, 2011 11:29 AM CST

Encourageing news, Jake's disease is stable. He had Bone Marrow pulls yesterday and the preliminary results are very positive. He shows no increase in cancer. This is GREAT news, it means to this point TPI is working. He will continue to get the TPI in Orlando and we will continue to fight. Thanks for all the prayer.

Lee

Thursday, January 20, 2011 11:05 AM CST

We are still in Orlando fighting this virus. Jake's symptoms started with a high fever, 103.6 which broke on Monday morning, sore throat, cough, and runny nose. His blood counts have crashed all week and he has needed multiple transfusions. We are headed home today and will return on Monday to do bone marrow pulls to see if tpi-287 is working. Please pray for good results.

Lee

Monday, January 17, 2011 7:25 PM CST

Jake and Lee headed to Orlando a day early this week. Jake has picked up a virus that has caused a sore throat and a few fever spikes. It has played havoc on his blood counts the last couple of days. He received fluids and an antibiotic to cover him today. He is eating and doesn't feel great but is hanging in. Thankfully his treatment is not going to be delayed tomorrow.

Kim

Thursday, January 13, 2011 8:17 AM CST

Jake continues to feel better. The foot pain is better also. He is still bleeding from his bladder. He is getting 2 to 3 bags of platelets every week and 1 unit of whole blood. We are managing it as good as we can. We will test him in Orlando on the 25th of January and see how well TPI is working.

Lee

Wednesday, January 5, 2011 11:23 AM CST

Everything is going good for Jake right now. He started back to school today. The treatments continue every Monday in Orlando and he is having only minor side effects.The TPI is causeing tingling in his feet. It is not painful, but more aggrevating. We are starting a new drug today to try and get it under control before it gets worse. I will update next week as thngs change.
Lee

Thursday, December 30, 2010 1:25 PM CST

Happy New Year! Jake had a good Christmas and is at home now recovering. We went to Disney for a couple of days and had a great time. He had the past week off of treatment and he will begin again next Monday. His appetite continues to get better, but is not where it needs to be. I will update agin after Monday's treatment.

Lee

Thursday, December 23, 2010 9:18 AM CST

Merry Christmas! Jake continues to feel better. He is trying to eat again. Some things go well, some do not. He is trying many different types of food. He is taking zofran to help cope with the side effects. I am encouraged at his ability to continue trying. I want to thank everyone for all of the prayers, I truly believe without the prayer we would not be in the shape we are in.

Lee

Monday, December 20, 2010 7:12 PM CST

Merry Christmas! We are done with our first cycle of TPI287 in Orlando. Jake is doing okay, not great, but okay. THe cancer seems to be "calm" right now. THe side effects are not good though. The TPI has caused a loss of appetite. Jake has not eaten in 6 days and has lost 6 lbs. He gets very irritated when we talk about it, but if he does not eat soon we will have to take action. I will update as soon as he eats.

Lee

Sunday, December 5, 2010 8:51 PM CST

Well, the first week in Orlando went GREAT! Jake had a week of testing and it all went smooth. He is starting a new treatment tomorrow using a drug called TP!=287. It is suppose to do well with marrow disease which is what he has. Please pray this week will go as smoothly as last.

Lee

Sunday, November 28, 2010 9:06 PM CST

We are in Orlando, Florida. Jake and I are meeting a new doctor tomorrow morning to discuss a new treatment plan. We have a couple of hurdles to overcome. First of all Jake is scheduled for 4 days of testing this week to see if he qualifies for a protocol that is done here. It is a old chemo drug that has been used for many years on other types of cancer, it is called TPI 287. This drug has only been used recently to fight NB, but has shown a lot of promise. Jake is still needs platelet transfusions 2 times a week and is still peeing blood. That will not stop him from receiving this treatment. His ANC is over 2000 today which is good, If his ANC falls below 500 he is not going to qualify. He must have measurable disease, which he has. The second hurdle is INSURANCE, he is on Georgia Medicaid and they REFUSE to pay for anything outside of the State of Georgia. I will have to meet with the accounting people this week to see if a payment plan can be put in place.

Jake has had a good past couple of weeks with little pain. When we left NYC 2 weeks ago the pain was a major concern. I am very grateful it has been manageable while we have been searching for another hospital and treatment.

I have spoken with Dr. Eslin 3 times last week and I felt very comfortable with what he has had to say. Please pray the test go well this week and a financial solution can be made. I will update again as we go through the week.

Lee

Friday, November 19, 2010 10:23 AM CST

A possible plan! The clinical nurse from CHOA called this morning and informed me they were looking at a nant trial for Jake. It is a Phase I study using 3 different types of drugs, cyclophospahmide, bevaciaumab, and zolmeda. The nurse indicated that she was "presenting" this idea to the Internal Review Board at CHOA in the coming days, and if they agree, Jake would need to be in Atlanta the week after Thanksgiving to start the testing. If he quailifies, he would start the same week.We will wait and see how things work out.

Lee

Thursday, November 18, 2010 10:21 AM CST

Still no plan. However, good things are happening all around Jake. He is feeling better than he has felt in several months. He is eating well. I am talking with a couple of different Doctors about a possible treatment for him, but nothing is set up yet. I fell like we are headed somewhere the week after Thanksgiving though. I will update as soon as things come together.

Lee

Monday, November 15, 2010 11:28 AM CST

First of all. thank you to all that have been praying for Jake. He has had a good weekend. He has slept in his own bed, played with his puppy, played COD black ops on his ps3, had minamal pain, and had an appetite for the first time in a month. We are waiting to hear from Atlanta aout possibly doing a NANT treatment there. They are seeing if they have any openings. Please pray they do have openings and will see us this week to get started.

Lee

Friday, November 12, 2010 8:39 AM CST

UPDATE FROM ST. JUDE - THEY HAVE EMAILED AND TOLD US NOT TO COME THAT AT THIS TIME THEY HAVE NOTHING TO OFFER.

The Good, The Bad, and the UGLY! First off, the good, we are Home! Last night at 2 a.m. we arrived back in Lake Park Georgia. Jake is playing the new Call of Duty Game on his ps3 with his brother right now. It is such a wonderful sound hearing them talking in the background as I type. The Bad, I met with Dr. Kushner yesterday morning and was informed MSKCC has NO other treatment options for Jake. They are done, no more treatments for him. Yes, I know it is terrifying! We have had 7 years of treatment there, they have been great to work with. I am very sad and extremely hurt that it is over. But, we can not stop, we can not lose focus on the task at hand. The Ugly, CANCER CANCER AND MORE CANCER in his bone marrow. The cancer is spreading, it is running crazy in his marrow. He just finished a high dose round of chemo 3 weeks ago and it stopped it, for now,but did not kill it. His cancer has now turned to "non-responsive" to chemotherapy. CRAP!

What's next? I have contacted St. Jude in Memphis, Tn. Jake has been referred to a Dr. Furman at St Jude by Dr. Kushner. We are waiting to hear from him TODAY for a consult visit next week. Please pray that call comes sooner rather than later.

Lee

Friday, November 5, 2010 5:15 PM CDT

Well, it is Friday (day 11) afte r stem cell rescue and we still do not have a climb in white cells. Jake is starting to get very homesick. Please pray for his mental healing as well as the physical healing.

Thanks for checking in on us and all of the encouraging notes they are such a blessing in a long day.

Kim

Monday, November 1, 2010 9:41 AM CDT

Jake's White cells are still not working. He is getting G-csf daily, but no white cells yet. The throat sores continue to multiply, his fevers have slowed down. He is getting TPN for nutrition, and lots of fluid. He is sleeping a lot and is getting pain meds around the clock. He will continue to be in patient over the next week or so until his white cells show back up and his body starts to recover. I will update later in the week as things change.

Lee

Thursday, October 28, 2010 12:16 AM CDT

Jake's fever has come. He was admitted last night. Now he will get around the clock anti-biotics and pain meds for his throat. The chemo has caused blisters or sores to form on his throat. He will need White blood cells to help cure this throat problem. It may be 7 to 10 days before he gets any though. I will update as things change.

Lee

Tuesday, October 26, 2010 3:12 PM CDT

Jake has finished 5 days of Kitchen sink chemo. He has had his third stem cell rescue. He has no white blood cells and has a sore throat. But, no leg pain!no fever!(yet). He is feeling better everyday, now he must recover from the chemo. The "next step" is what we are looking at now. Hopefully the doctors can come up with a clear plan.

Lee

Thursday, October 21, 2010 2:11 PM CDT

Day 4 of chemo.Jake has started getting some relief from the leg pain. He has slept most of the day and has rested well. We are searching for the next step, but have not found any direction yet. Please pray the chemo is knocking the crap out of the cancer and we will find the next step of treatment soon.

Lee

Tuesday, October 19, 2010 7:28 PM CDT

We have finished two days of chemo and Jake is tolerating it so far. We have not made alot of progress on the pain as of yet. Thankfully the pain medicine is controlling it until the chemo can do its job. Jake is in desperate need for a miracle. We will be using his last stem cell rescue so we have to find some type of non-toxic treatment to control and eliminate this disease. Jake needs this chemo to not only stop the progression but to completely eliminate this disease. Please help us in praying for this miracle in Jake's life. Jake has been battling for a very long time, but he is still fighting.

Pray,
Kim

Thursday, October 14, 2010 3:46 PM CDT

Sorry for the lapse in updates. We are all still trying to wrap our heads around the news that Jake's disease is in aggressive mode again. He started experiencing legpain again last weekend and the disease is spreading. The pain is already pretty severe. Jake and Lee did come home on Tuesday and we have been going daily for platelets at our local hospital. Lee, Jake, and I will be headed back to NYC on Sunday where he will start a very high dose of chemo on Monday. This will take his last stemcell rescue for recovery. Please pray hard for this to stop the disease and allow us enough time for the new antibodies treatment to become available. This is a devastating time for our family. Please pray for us.

Kim

Friday, October 8, 2010 8:51 PM CDT

Surgery went well, Jake's bleeding has stopped. He is resting comfortably at the RMH tonight. He will get platelets tomorrow and will continue hydration all weekend. We hope to go home early next week. I will update once I know.

Lee

Thursday, October 7, 2010 4:26 PM CDT

Jake continues to lose blood. He has had daily transfusions, but it has not slowed it down . I met with a surgeon today and he is going to scope his bladder tomorrow. Best case, he can clean out the clots and repair the bladder with the scope procedure and worst case, the damage to his bladder is to severe to fix with a scope and he will need additional surgery and be in the hospital over the next few days. Please pray the scope will work and Jake will not have to endure the harder surgery. We go in at 6 am in the morning and they are working us in. I will update tomorrow once we know the deal.

Lee

Monday, October 4, 2010 2:34 PM CDT

Time to pack our bags. We are headed to NYC in the morning. I have been emailing Dr. Kushner as things have continued to change. He has had enough emails, he wants to see Jake asap. We will go to the clinic tomorrow and get a cbc and start to get things figured out. I will update as we get some direction.

Lee

Saturday, October 2, 2010 8:31 AM CDT

Different day, same crap. Jake is getting platelets almost everyday. His bone marrow is "tired" and can not produce platelets. SGMC is doing a great job and we spend a lot of time there. The blood in his urnine continues, it gets a little better and then goes back to bad again. Patience, Patience, Patience... We continue to pray for recovery and healing and of course KILL the CANCER. Also, Arms wide open has won a $250,000 grant from Pepsi that they are donating to MSKCC for the advancement of treatments for Neuroblastoma. This will have a direct impact for Jake. We are very grateful for all of your help in winning this for all of the NB kids that need it.

Lee

Tuesday, September 28, 2010 8:36 PM CDT

Jake continues to recover. He is in SGMC tonight to receive more platelets. He is in good spirits and is glad to be doing this recovery in Valdosta instead of NYC. Hopefully, he will get better as the week goes on.

Lee

Monday, September 27, 2010 9:45 AM CDT

Jake continues to recover. He is getting 2 units of platelets today at SGMC here in Valdosta. His white cells are rebounding and his red cells are holding. Hopefully he will be able to return to school later this week and have some normalality in his life for a few days. He will head back to NYC sometime in the next 2 weeks for another round of chemo. I will update as he recovers.

Lee

Wednesday, September 22, 2010 7:30 PM CDT

Jake is back in SGMC for fever and no white counts. He is battling a severe hemroid problem and blood in his urine also. He is getting great care here and we are thankful for the doctors and nurses that we have in Valdosta, but... we really NEED a pediatric Oncologist in Valdosta, Right now Jake is on 2 antibiotics and fluid to keep him hydrated, his temp went to 102 last night but broke quickly. I think his white cells will start coming back tonight or tomorrow and he will recover quickly when that happens, I will update once we get out.

Lee

Friday, September 17, 2010 10:18 PM CDT

Day 3 at SGMC and Jake is getting bored. His counts seem to be still going down, his fever is stable and low grade. His cultures came back today negative. His white count is .1 today and I do not expect it to start back up for a couple more days. The folks in NYC will not let you leave the hospital until your white cells come back up, but here we can go if he has no fever spikes during the night. We will see what his blood looks like tomorrow and how he does during the night. Please pray for a safe recovery for him and the chemo has done a good job in Killing this NB,

Lee

Wednesday, September 15, 2010 1:32 PM CDT

Jake is in South Georgia Medical today. We got home on Friday night and he has been fine. This morning he developed a fever and need some blood products, so we are here now. He will have a couple of days of down time and should be feeling better by the end of the week.

Lee

Wednesday, September 8, 2010 12:04 AM CDT

Wednesday, September 8, 2010 11:57 AM CDT

"PEPSI has initiated a challenge - 1 Sep - 30 Sep 2010, which gives charities the opportunity to get a $250,000 donation for the top two vote getters for the month. Thank you all for sharing the info to all your facebook friends and networks! Here is the direct link that will get you right to the voting page. You have to make a password and then scroll to the bottom of the page to vote. Please vote daily. Texting is still easiest if you text but, you can do both once a day:"

TEXT PEPSI (73774) and then Text 102653.
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

Jake is on day 2 of chemo. He is doing fine and continues to amaze me. Dr. Chueng came by today to check on him. He is normally not in the clinic and spends most of his time in the lab. He has a "new" human antibody that is coming out in the next few weeks that Jake will get. This new treatment is very exciting and has a lot of promise. Pepsi has a contest and is giving away money for research. Please follow the directions above and vote daily for this contest. Jake and I are coming home this Friday and he will recover in Valdosta next week. I will update again as we get closer to coming home.

Lee

Thursday, September 2, 2010 11:15 AM CDT

Another Relapse, CRAP! Jake had a MIBG scan on Wednesday and it showed "new" areas of NB in his left shoulder, spine, and pelvis. He is not in any pain, and it is hard for him to believe that it is back, denial, but it is. Actually, I don't think it ever left his body. The little bit of good news is his LDH is at 170, this is the marker in his blood that shows NB aggression. It is normal which means things are not spreading fast. The "plan" is to start chemo next week and see if we can control it. Jake is a WARRIOR and is ready to battle some more. We will have a couple of weeks of treatment and recovery and if things go well we will repaeat the same process and scan again. Please pray for a smooth treatment with no complications and the chemo will KILL the cancer quickly.

Lee

Thursday, August 26, 2010 11:11 AM CDT

Finally, some direction. Sorry for the lapse in updates, it has been very busy around the Miller house over the last few weeks. Jake is doing well, he continues to attend school and is taking care of the new puppies everyday. He had a small positive in his blood chemistry this past week. For the first time since May of this year his platelets increased without a transfusion(69). Dr. Kushner emailed this week and has asked us to return to NYC next week for a work up. Jake and I will fly up on Monday and he will go through the normal test and scans to see how things look on the inside. It will take a couple of weeks to decide the "next step" , but we are getting closer to a treatment plan. I will update next week on the test and we will see how things go.

Lee

Friday, August 6, 2010 11:16 AM CDT

Sorry for the lapse in updates, it has been crazy since we got home. Jake made it through JFK security with no issues, the TSA people handled it well. He started his Junior year of high school today. It was very exciting around the Miller house this morning. He continues to need blood and platelets 2 times a week. It is irratateing, but part of the process. Who knows when the transfussions will no longer be needed, but at least we are home. Luke got home last night and Jake was gratefull for it. They have missed each other this summer. I am not sure what the next step is at this time. The NB Team in NYC had a meeting about Jake this past Tuesday, but nothing was decided. Dr Kushner has emailed one of the doctors in Atlanta about a drug they use there. Unfortunatly we do not have a good track record with this doctor and I doubt he will be interested in treating Jake. He has an ego problem and can not get over the fact that he is not Jake's primary doctor. It is a shame that ego's often get in the way of treatment for children. We will see how things develop over the next few days. Book rush starts next week, please pray for a very busy time for us and lots of customers.

Lee

Monday, July 26, 2010 10:27 PM CDT

Jake got out of the hospital on Sunday evening around 7. It was great to walk outside after 13 days of being stuck. They have a great way of keeping him in good shape when he is out by using a portable pump and bag of fluids that they put in a back pack. We call it "back pack buddy". It allows Jake to still get the stuff he needs to feel well without the stress of being in the hospital. For the first time ever, for him, we are taking back pack buddy home with us. I am a little concerned about JFK airport security tomorrow, but I am ready to take my chances. Jake will have bone marrow pulls tomorrow at 2 and then we will head to the airport. We have a 9 p.m. flight tomorrow night and will get into Jacksonville around midnight. Kim is coming to pick us up and we are headed home. We will go to South Georgia Medical on Wednesday and get more fluid for backpack buddy and repeat that everyday until next week. Jake is a little concerned also about the back pack, but it is a small problem. We have 5 new lab puppies at home waiting on him and he is ready to do whatever it takes to get home. I am not sure about our return yet, but I will worry about that later. We are very thankful for all of the prayer and support through this process and are also grateful to be still fighting! I will update once we get home and let all of you know how the airport drama turns out.

Lee

Friday, July 23, 2010 9:51 AM CDT

We have some white cells, just not enough. His ANC is at 200, it needs to be 500 to get out of the hospital. He is getting more platelets today. He is resting comfortably, playing on his laptop, and watching tv. He is eating and drinking well. The days are long, but it just takes time for recovery. Maybe tomorrow will be the day. My lab had puppies this morning, Kim is freaking out but handling it . Jake is in good spirits but is ready to go home.

Lee

Thursday, July 22, 2010 9:22 AM CDT

Still no white cells. We are now day 11 in the hospital with no idea when we get to go home. Jake feels fine, but until his white cells return, we are stuck. He is receiving double amounts of G-CSF trying to boost his white cells, but no luck yet. The more time we spend here, the more we miss home. The situation seems never-ending. Please pray for a solution to this and we can get out sooner rather than later.

Lee

Tuesday, July 20, 2010 12:45 AM CDT

Jake is still waiting on white cells. He feels fine, he is eating well, but is bored to death. He is still needing platelet transfusions daily. They have increased his g-csf shots today and that should help. We have lost our private room, that is a little stressful, but we will survive. Hopefully we will get out tomorrow.

Lee

Thursday, July 15, 2010 10:14 PM CDT

Things are much better today. Jake is starting to eat a little, he is drinking very well and is feeling much better. His blood in his urine is gone! He has no fever, no pain, and looks really good. He is getting gcsf shots daily and we are waiting on his white cells to rebound. Hopefully the bounce will happen soon.

Lee

Tuesday, July 13, 2010 10:33 PM CDT

Today was Stem Cell Rescue Day. This was the third time in 10 years of fighting cancer that Jake has had this done. The first two times he had no problems, this one was much different. He had a reaction to the rescue and it was difficult for a couple of hours. He had fever, chills, and his blood "rushed" to his major organs according to Dr. Modak. He had a team of nurses and Doctors pumping in different drugs, putting oxygen on him, and working on him. This went on for about two hours. It was terrifying! But, he settled down and things started working again and he is much better tonight. After it was over he ate mashed potatoes and drank two 20 oz mountain dews. He has not eaten or drank since last Saturday. He still is passing large amounts of blood through his urine, but they are giving platelets and whole blood. He is inpatient and has no white blood cells. Dr. Kushner came by tonight and he indicated that Jake will probably not recover for 10 to 14 days. Once he does recover they want to do a complete work up with scans and bone marrow pulls before letting us go home. We will do whatever is needed, but pray for a fast recovery and good test results.

Lee

Tuesday, July 13, 2010 7:42 AM CDT

Jake is now inpatient. He developed a fever late yesterday in the clinic. His ANC is at Zero, which is normal, so we are now in the hospital until his white cells recover. Today he is getting his Stem Cell rescue. If everything goes well, he will be here for 10 more days. Dr. Kushner wants to check his bone marrow in 2 weeks and then we should get back home. Jake is resting well and is getting everything he needs. The fever broke within a hour or so, but it is MSKCC policy not to let him out until his white cells recover, I will update as things change.

Lee

Monday, July 12, 2010 10:14 PM CDT

Jake made it until 4 o'clock today without a fever. At 4:01 his fever went to 38.1. We started antibiotics and went to the inpatient side of the hospital. His fever went to 39.1 in less than a hour, but broke and is back to normal. He is getting stem cells tomorrow, but he will not get out of the hospital until his white cells recover. It is hard to say how long, but most likely 10 days from tomorrow. I will update as things change.

Lee

Saturday, July 10, 2010 12:12 AM CDT

Chemo is finally over. Jake is knocked out for today, which is good. He started having stomach pain, throwing up, and a sore throat today. He finished day 5 of 5 of chemo this morning. He got a back pack of fluid and we came back to the Ronald House. Once we got here I gave him a zyprexa pill for his stomach and it knocked him out. He should sleep and rest well today. I have another back pack to hook up tomorrow morning and we will return to the clinic on Monday. It is suppose to rain today in NYC, so we will lay around and stay inside. His ANC is at 800, so it is better for him to lay around and avoid exposure to anything anyway. He will get a stem cell rescue on Tuesday and start GCSF shots on Monday.

Lee

Thursday, July 8, 2010 6:57 PM CDT

Cancer SUCKS! Jake is having odd issues with this round of chemo. He has had this type of chemo several times, but he has never started this chemo in such bad shape. His blood counts continue to fall rapidly everyday. He has received 2 platelet transfusions and 1 whole blood unit in the last 3 days. He has 2 more days of chemo left. Tonight he has a sore throat, no fever yet, but it is coming. We will probably be in patient soon, which sucks even worse. Please pray for a quick recovery and that this round works.

Lee

Wednesday, July 7, 2010 11:23 PM CDT

Day 2 went very smooth. Jake is starting to feel the effects of chemo, but he is handling well. He has complained all day about being here, but that is common. Each day will bring new issues, but we will get through them one at a time. Please pray for no major problems and our safe and quick return.

Lee

Tuesday, July 6, 2010 6:13 PM CDT

Day 1 of chemo is over! It was a wild and long day. The clinic was closed yesterday, so this was a monday and Tuesday stuffed in to 1 day. Jake is doing temadore,irronotecan, and vincristine chemo this week. His counts are terrible, but he is getting a stem cell rescue next Tuesday. He had chemo, then 1 unit of blood and 1 unit of platelets. In 10 years of doing this, this was the first time he has had blood products and chemo together. Kind of strange, but whatever. He is feeling tired and homesick, other than that he is fine. I will update again in a couple of days.

Lee

Thursday, July 1, 2010 11:47 AM CDT

We are in NYC. Jake is getting platelets today and we are meeting with Dr. Modak. I feel like he is going to tell us more chemo next week, but I will wait to hear what he has to say. I will update after I speak with him.

Lee

Monday, June 21, 2010 1:27 PM CDT

Jake's bone marrow came back on Friday positive for cancer. Dr. Kushner is gone this week and the email came late on Friday, so I do not have a lot of detail. All he said was the marrow still shows NB cancer. I was hoping for better news, but that is the news we got. Jake is at SGMC today getting platelets. He still needs transfusions 1 or 2 times a week. We are returning to NYC next Wednesday for some type of treatment. It is very unclear at this time but I am sure it will include some type of chemo. We took Luke to South Florida this past weekend for the next 7 weeks to a baseball school. I hope Jake and I can get back in time to see him play some. I will update once we get more info on the next treatment.

Lee

Friday, June 11, 2010 6:12 PM CDT

What a GREAT day. I met with Dr. Modak today and he informed me that Jake is NED from any cancer in his bones! The MIBG scan was completely clean!!! We will get the marrow back middle of next week and see where that is. We are at JFK now headed home. I will update after the marrow results are in.

Lee

Thursday, June 10, 2010 2:22 PM CDT

We are very happy this afternoon. Jake's mibg scan looks AWSOME! We will meet with the team tomorrow at 3 to get the next step, but things look good today. JAke is getting platelets this afternoon and we will hang out at the Ronald House tonight. I will update again tomorrow after the meeting.

Lee

Monday, June 7, 2010 7:36 PM CDT

We are in NYC. Jake was having some issues with blood in his urine last week, and Dr. Kushner wanted us to come on up last Friday. Jake has received platelets and his bleeding has stopped. He will have all of his work ups this week and depending on how the test look, the next step will be figured out. He will have his MIBG on Thursday and that will be the main factor. Thanks for checking in and I will update as things change.

Lee

Saturday, May 15, 2010 12:52 AM CDT

JAKE IS COMING HOME TONIGHT!! Jake finished MIBG therapy on Friday and was released from MSKCC. Kim, Kala, and Jake are packing up the Ronald room and heading to the airport for the last fight out of JFK tonight. It will be great to get them home. It has been 8 weeks that Jake has been in NYC. He will have to go to Atlanta this week for a check up, and then he will have to return to NYC in 4 weeks for scans. I will continue to update as things change.

Lee

Wednesday, May 12, 2010 7:17 PM CDT

MIBG injection went well yesterday. Jake has not really had any major complications his neck swelled a little during the night last night, but that has almost gone away. We got some good news that he does not have to have the three days of consecutive scans this time; so, that means we will get home earlier. We should get home either Sat or Sunday. Yippee!!!!!!!!!!!!!!!

Please continue your prayers that this treatment has worked.

Kim

Monday, May 10, 2010 8:31 PM CDT

Tomorrow is the day. Jake will get his injection for MIBG therapy tomorrow and hopefully he will be cooled down by Friday so he can be released. As soon as he is released we have to have three days of scans and then we are free to head home. Please pray for no complications and for him to cool down as soon as possible.

Kim

Friday, May 7, 2010 6:33 PM CDT

We finally got the call that they had received the approval for Jake's treatment. Jake will begin treatment on Tuesday and prayerfully we will be flying home the following Tuesday or Wednesday.

Jake is feeling much better. He received a platelet transfusion on Monday and that is the only thing he has needed all week. His red cells had gone up today from the last labs he had on Wednesday. His platelets are not up, but the bottom did not completely fall out either. Jake told me that those are going to be up on Monday. I hope he is right, I would feel a lot better going into MIBG therapy on Tuesday if I knew his platelets were on the rise. The MIBG therapy will wipe them out again, but it is not an immediate drop like chemo it usually takes 3-5 weeks for the counts to start going down.

Kala is arriving tonight. Jake and I are both very excited for the company. It will be nice to have someone else to hang out with. I think Jake may be getting a little tired of me. We have had a lot of down time this week and I have not entertained well enough. The calvary is coming though. Kala loves to entertain.

Thanks for checking in,
Kim

Tuesday, May 4, 2010 10:16 AM CDT

Jake continues to get better. He and Kim are hangging out in the Ronald Mcdonald House. We are waiting on the final approval to get started on MIBG Therapy. Once the MIBG is over Jake will get to come home. I will post again once we get started.

Lee

Wednesday, April 28, 2010 6:42 PM CDT

Okay a decision has been made. Jake will be doing MIBG therapy again. This is the same treatment he did in December. We are hoping to begin on Tuesday or Wednesday of next week, but it may have to be pushed to the following week. We should know by this Friday when the treatment will begin. If it is pushed back a week then we will have to decide whether we are going to fly home for a week or stay here. We obviously want to come home, but I am really afraid if Jake gets home we will not be able to get him back up here. He knows he has to do a treatment, but he really does not want to do this one. The treatment itself is not bad on him. It is not toxic on his body. The part that freaks him out is the catheter and I cannot say that I blame him. He is working hard to get over it and I know he will. Home however could be to tempting especially since it would only be for a week. As a mom I worry about so many things: his bladder is still holding blood, he is still getting platelet transfusions ever other day, he feels much better, but not great. This treatment will more than likely cause us to lose our second stem cell rescue and we only have one left. We did not use one last time, but his marrow is so weak from the chemo, but we cannot let the cancer have any time to recover itself.

Sometimes this feels like we just throw a dice in the air and how it lands determines what we do. I hate so much that all of the decisions regarding treatments now feel so much like a guess. I know that God is in control and so many people are praying for Jake, us, and his doctors, but I am human. I was not feeling good about this over the weekend, but I do have more of a peace about the choice we are making.

Please continue to pray,
Kim

Monday, April 26, 2010 6:36 PM CDT

Jake is still having a little problem from the cytox that is effecting his bladder; so, we had to bring a backpack of fluids home again tonight. He received a platelet transfusion today. All in all he is feeling pretty good. We did have the day off from the clinic tomorrow, but now we have to go back over and disconnect from the backpack.

We had a nice discussion with Dr. Kushner today where I received a final copy of the mibg scan that showed that Jake's disease had decreased significally from the previous scan. They will be having a big discussion regarding Jake's next step tomorrow night.

I will update again on Wednesday when I know what the next step is.

Thank you all so much for all the wonderful items that have been sent our way. It means so much to know so many people are praying for Jake.

Kim

Saturday, April 24, 2010 3:06 PM CDT

Lee has headed back to Valdosta today. Jake and I will handle things are our own for awhile. Jake is having a good day so far. We went to a movie and he walked the eleven blocks there and back. He also drank and entire drink and ate quite a bit of popcorn (big accomplishment). This upcoming week should be pretty lowkey. We will head to clinic to check labs and get whatever blood products Jake needs daily. Hopefully each and everyday Jake will show more signs of improvement.

We are thankful for the day we are having and now I am fixing to beat my best guy in a little rummy.

Kim

Friday, April 23, 2010 3:23 PM CDT

Well this scan is back, the good news is Jake's cancer is NOT any worse. The progression of his cancer has been stopped. He still has lots of cancer in his marrow though. Dr. Modak wants us to do another round of MIBG therapy. It will will take a few days to get his body ready. I will update once the final decision is made.

Lee

Tuesday, April 20, 2010 3:09 PM CDT

Tuesday, a much better day. We arrived this morning at the clinic around 8. Jake had a odd low grade fever most of the night, about 3 a.m. he passed a large blood clot and the fever stopped. We have been on dilaudid every 3 hours and the shakes have stopped. Jake got a platelet and whole blood transfusion today. He is peeling all over today, but other than that no other issues. Kim is flying up tomorrow and I am headed back home in the next couple of days. Jake will have a MIBG scan on Saturday to see how well the chemo worked. I may wait to see the scan, I am not sure yet. Each day things get a little easier for Jake, he is eating solid food today and starting to drink more and more. He will probably get a back pack tonight to keep him in good shape, we are waiting on Nurse Linda to make her mind up now. Thanks for checking on us.

Lee

Monday, April 19, 2010 6:41 PM CDT

What a long, long Monday. We arrived in the clinic at 9 a.m. this morning. Jake was not feeling well, he is jittery, feeling anxious, VERY emotional, and his skin is peeling from his head to his toes. We saw Kushner in the hall and he suggested we get to the back and get platelets. Terry,our nurse, noticed Jake needed more than platelets, she called Nurse Linda and Jake get a Dilaudid rescue. That help tremendously. After 4 hours we got in front of Nurse Linda finally. She took one look at Jake and flipped out! Jake is suffering from a narcotics dependancy. He is like a junkie, he gets shakes, his skin itches, and he is very emotional. Jake has been on dilaudid for the last 24 days and his body has developed a dependancy. We have stepped up his dosage trying to get him off of it. We will concentrate this week on getting it in check, but it is going to take at least 2 weeks to get this under control. We will not be able to start his work ups until next week. Depending on the work ups, it will probably be time to start something else by the time we get him back on his feet. I HATE CANCER!

Lee

Saturday, April 17, 2010 7:24 PM CDT

Free at last, thank the lord we are free at last! Jake walked out of MSKCC at 4 p.m. this afternoon. We are back at the Ronald house and resting. He is not attached to any pumps for the first time in 3 weeks! We will hang out and relax tonight and tomorrow and return to the clinic on Monday. Next week he will do a complete work up, and then we will fly home. He was a little freaked out today when we got to the front doors of the hospital, he was concerned about leaving. But after we got to the house he was fine with it. Thanks for all of the prayers and I will update on Monday.

Lee

Friday, April 16, 2010 12:35 AM CDT

Jake now has a .3 white cell count! He is close to walking out of here! The pain med pump is shut off, he has not used it in the last 24 hours. If his white counts makes it to .5 tomorrow, we will go back to the Ronald House. He is feeling much better today. The mouth sores are much improved also. The "plan" as of now is to get out of the hospital Saturday, come back to the clinic on Monday and start his work up. He will do blood work, mri, ct, bone marrow pulls, and MIBG scan next week. After all of the test are done, we get to go HOME. There are a couple of different options for treatment next, it will depend on how much of the cancer is still in his body. I will update again tomorrow.

Lee

Thursday, April 15, 2010 9:01 PM CDT

Jake's white blood cells are now at .1. They need to be at .5 before any changes will start to take place. He continues to improve everyday. He has started removing the throat sores slowly by coughing them out. It has been a difficult process. He continues to get nutrition thru his line with TPN. It has helped a lot. He and I played cards tonight for about 10 minuets. This is the most alert he has been in several days. He has not had as much pain meds today. Dr. Kushner stopped by and was very positive about Jake's condition. We are hoping his white cells come up over the next couple of days and we get out of the hospital this weekend. Once we are out, he will have a few days of follow up and testing and we can return to Valdosta. Thanks to everyone for the calls and prayers of encouragement.

Lee

Tuesday, April 13, 2010 3:44 PM CDT

A new day. Things are moving right along, still no white blood cells. He had to be disconnected from his lines today and reconnected. While he was not attached to anything, he was able to take a shower. That was a blessing. He has been laying in a hospital bed for 7 days and to wash off the crud was great. He is awake more today. He also has a skin peeling thing going on. We are using lotion to control the dry skin and he is watching TV. He still can not eat, drink or talk due to the mouth sores. They are getting better, but are still a problem. He is getting platelets again today and is still getting 2 antibiotics for the bacteria infection in his colon. I will continue to update daily with any changes.

Lee

Monday, April 12, 2010 3:17 PM CDT

Still NO White cells! Jake is feeling better each day, but until he gets white cells back in his blood he will continue with the problems he is having. He is getting a red blood unit today and he has platelets on stand by if he develops any nose bleeds. He has been more alert this afternoon, he has watched some TV and played on his DS. He is still not eating or drinking, but he is getting TPN for his nutrition. He will continue to slowly improve. Please pray for continued recovery and WHITE BLOOD CELLS!

Lee

Saturday, April 10, 2010 10:34 AM CDT

One more day closer to recovery! Jake continues to amaze me at his desire to win! He continues to make the best of his situation. We are so blessed to have the support and prayers from all of you. Thank you for the phone calls and emails of love and support. He still has the mouth sores, bacteria infection, fever and low counts. But each day I see small signs of improvement. This is a marathon of recovery not a sprint. I would like it to be much faster than it is, but I will take the steady slow improvement we are getting. It is hard on us to sit here day after day, but I am so thankful for MSKCC and the awesome work they do in the fight against NB cancer. It will most likely be Wednesday or Thursday of next week before his blood counts start to rise, once that happens the other issues should resolve soon after.

Thanks,

Lee

Friday, April 9, 2010 9:44 AM CDT

We are one day closer to getting back on our feet. Jake continues to have low blood counts, mouth sores, fever, bacteria in his intestines, and weight loss. He is getting daily g-csf shots to boost his white cells, daily platelet transfusions, and he is getting his second red blood cell transfusion now. The mouth sores are improving, but slowly. The nurse has set up a suction wand that is like what is used at a dentist office to help clean out the build up in his mouth. The fever is normal with 0 white blood cells, it is staying under control so far with tylenol. The bacteria issue is being medicated and will take 5 to 7 more days to fix, but is showing signs of improvement each day. Jake is getting TPN to help with the weight loss and it is slowly working. Each day things improve a little and I am grateful for that. He and I are both home sick and wishing we were in South Georgia watching baseball and fighting pollen. But, there will be other times for that. Thank you all for the prayers and love that you have shown.

Lee

Thursday, April 8, 2010 12:23 AM CDT

Jake is feeling better today. The mouth and throat sores are a little better, He is a getting TPN to help gain some weight. He has lost 9.5 pounds over the last 2 weeks and he needs it back. He has a bacteria infection in his intestines, they are giving him meds for that. We are getting moved to a private room this afternoon, which is good. He has been awake more today, so I am hoping he will sleep more tonight. Thanks to everyone for the prayers and keep them coming.

Lee

Tuesday, April 6, 2010 10:49 PM CDT

Stem cell replacement day! All in all it went very smooth. Dr. Modak pushed the new stem cells, 2.3 million, into Jake's line and he just sat still. The smell was very strong, it smells like cooking tomatoes, I don't know why. The team made arrangements for Jake to go in patient after the procedure if he developed fever, but he did not. We went back to the Ronald house and Jake took a bath. Kim is going back home on the 8 a.m. flight tomorrow. She and I went out to dinner and talked about her return to "the real world". We came back to the Ronald and checked Jake's Temp and he was a cool 99.7. We watched a little American Idol and Checked it at 9:30...102.5 CRAP! We went to Urgent care at 9;45 and did not get back to a room until 11;15. We are being admitted to the 9th floor and will be hear until his counts rise. The stay will be 7 to 10 days. Kim is stressing even more about leaving, but she needs to. Jake and I will be fine and she can come back in a couple of weeks and we can tag. I will update again soon.

Lee

Sunday, April 4, 2010 6:02 PM CDT

Happy Easter, he is risen! Today has been a slow day, which is good. Jake continues to amaze me. He has finished 5 days of chemo and now the recovery begins. He is having complications from the large amount of fluid he is getting. Yesterday he started swelling around his face and head. The fluid is collecting around his eyes and his right eye is swollen shut. He has no pain on his head, but it looks horrible. He got a platelet transfusion on Saturday and we returned to the Ronald House. His kidneys can not process the fluid fast enough and it builds up or collects around his head. He has a sore throat today, but no fever. Tomorrow we will go to the clinic and see how things look. Please pray that the chemo has done the job and his recovery is quick.

Lee

Friday, March 26, 2010 9:05 PM CDT

Jake is in NYC. The ABT plan has been changed. Last Friday he started having leg pain. This has always been a indicator of NB growing. I emailed Dr. Kushner on Sunday and he set up a mibg scan for this week. Kim and I both came with Jake this week, we knew the scan was going to be ugly, and it was, He has bone marrow involvement all over his body. His last scan was on February 18th and he was clean, but in 5 weeks the cancer has grown rapidly. The good news is we have stem cells, and his counts are good, not great but good. The plan is to start High dose chemo on Monday using 5 different types of drugs. He will get the strongest possible dose to stop the NB from spreading even more through his body. He is in pain, mainly in his legs and head. The cancer is moving quickly and so are we. He will get stems cells on the monday after the chemo is done. This will give his body the "jump start" he needs to start the recovery process. There are some crappy side effects from this procedure, but with a little luck and a lot of prayer hopefully they will be minimal. He is getting his game face on this weekend and getting ready for battle over the coming weeks. I am flying back home tomorrow and Kim is taking week one. I will return and tag with Kim over the coming weeks as the battle rages on. This is difficult to do, but Jake has 9 years of experience and a lot of pray warriors to draw from. I will update again soon.

Lee

Friday, March 5, 2010 11:51 AM CST

We met with a new doctor in Atlanta yesterday. He went over some new therapies that he is in charge of that might work well for Jake. We have decided to go on a drug called ABT-751. Jake will be able to take this orally and stay in Valdosta most of the time. We will have to go to Atlanta every three weeks for a check up and the next round. All in all this sounds very easy and very promising for Jake. We are very excited about the future and hope that this pill will do wonders for Jake. Thanks for checking on us and I will update as things change.

Lee

Tuesday, February 23, 2010 8:41 PM CST

We are headed home. Jake is NOT doing mibg therapy round 2. His chemistry levels are not high enough and he needs more time to build back up. We may do the round 2 mibg in the future, but not right now. We are waiting on a contact from our old friends at CHOA in Atlanta. They have a treatment that would help Jake called ABT. Hopefully we will hear from them tomorrow or the next day and get started in the next couple of weeks.

Lee

Thursday, February 18, 2010 11:05 PM CST

Day 1 of scans is over. Jake had a cbc today that I did not like. His platelets are at 114. This is high enough to start the mibg next week, but I am not comfortable with it. He had 258 on his platelets in December. He breezed through the first round, but I think he will have a much harder time this time. I have not told him that a second round is why we are here, but he found out today when nurse Linda told him. He was not very happy about it. He will have scan 2 tomorrow and we are meeting with Dr. Kushner around 2. I am not sure what other options there are, but I think we need to explore everything before we move forward with mibg. I will update after our meeting tomorrow.

Lee

Wednesday, February 3, 2010 12:45 AM CST

I received a call from Dr. Modak today. He wants to do another MIBG treatment in NYC. We will start on Febuary 18th and finish in the first week of March. Jake had a great response to the first one, and had very few side effects. So, it is like everything else that we do in fighting this crap, "if it ain't broke, then don't fix it", in other words "it worked good the first time, so let's TRY again". I hate doing this, but there are few other options at this time. It is hard to drag Jake back into this treatment a second time, but all in all it is the best solution at this time. I wish there was a "magic pill" but I know there is not. I will spend the next couple of weeks getting myself mentally ready and getting Jake physically ready. Please pray for a uneventful treatment again with good results.

Lee

Thursday, January 28, 2010 7:29 PM CST

All test results are in. MIBG clean, ct scan clean, bone marrow biopsy clean, bone marrow aspirates still showed neuroblastoma activity. We were so close to being cancer free. The one last test that came back had disease. I hate cancer. We are going to spend the rest of tonight and possibly tomorrow being sad and grateful at the same time. We had all gotten our hopes up so much that Jake was going to be clean. We are still so very grateful for the response that Jake did have to MIBG Therapy. We do now have a clean MIBG and that has not been clean for about three years now; so, that is news for PRAISE! Dr. Kushner emailed and told us about the aspirates and said that they would talk and get back with us regarding the next step for Jake. Please keep Jake and the rest of us in your prayers.

Kim

Thursday, January 21, 2010 12:34 AM CST

Lee just called he and Dr. Modak looked over the MIBG and could not see anything. They compared it to the last scans and the spots that had been there are no longer showing up. We still need to wait on the official reading, but it looks wonderful so far. Jake's ct scan has come back clean and it did have an area of concern last time. Jake has had an amazing response so far to MIBG Therapy - thank you all for your prayers and please keep them coming. We are still waiting on the results from bone marrow before we will know what Jake's next step is.

Love you all,
Kim

Monday, January 18, 2010 6:19 PM CST

It is scan week for Jake. Lee and Jake arrived in NYC yesterday. They went into clinic today for a CBC and Jake's platelets have risen from last Friday. It looks like he may not have to have any transfusions after MIBG Therapy. We are always so thankful when his body is able to recover itself without any transfusion help.
Jake's scans will begin on Wednesday and the big MIBG scan will be Thursday morning. We will update as soon as we know anything.

Thanks for checking on us,
Kim

Saturday, January 2, 2010 6:15 PM CST

Happy New Year! Jake is doing well, he is resting and playing on his computer. We are checking his blood and so far so good. The plan is to get through two more weeks at home and return to NYC for scans. Depending on the scan results , he will do a second round of MIBG or he will be on a low toxic treatment. I will update as things start to firm up.

Lee

Friday, December 18, 2009 8:09 AM CST

We are home! Jake is feeling fine, he went to school today. The treatment will take 3 to 6 weeks before we will know if it has worked. During this time Jake will need bloodwork and checkups. We have set up a once a week trip to Atlanta during this time and we are trying to get blood work done 1 time a week locally. We do NOT have a pediatric oncologist in Valdosta and that presents major problems. We desperately need a local oncologist for our town. Thanks to all for the prayer and support over the last few weeks, Jake has done remarkably well. Merry Christmas, Lee

Monday, December 14, 2009 9:58 AM CST

MIBG THerapy is done. Jake feels fine and is ready to go home and celebrate Christmas. We have a full body scan today and tomorrow and fly home Wednesday. We will not know the affects of this treatment for about 6 weeks. Jake and I will return in January and then we will know. On the first day of the treatment, Jake wanted Chinese food. His fortune cookie said, "the job is well done" let's hope the cookie was right.

Lee

Tuesday, December 8, 2009 8:12 PM CST

Tomorrow is the big day. We have finished all of the prelim stuff and now is the time. Dr. Kushner will be in patient this week, which is good. We will be in room 901 for 3 to 5 days. He will have 3 days of scans once he cools down. Dr. Modak is concerened about the follow up care, he knows we do not have an oncologist in Valdosta. Jake will need blood checks 2 times a week and will need transfusions. I will update along the way.

Lee

Wednesday, December 2, 2009 8:50 AM CST

We are preparing for MIBG Therapy. Jake is taking SSKI and Cefmol to get his body in condition. We are flying up to NYC on Sunday. He will have a CT on Monday morning and we will start the MIBG on Tuesday. This is a big step in the overall process of Jake's treatment. Kim and I both have always been cautious with the thought of this therapy, but we think now is the time. This seems to work best with minimal disease, and that is what we have. Jake is ready for the treatment, he is aware of the details and is getting his "gameface" on. This should be a uneventful treatment. The hardest part is the down time he will have. We are hoping he can use his laptop to help pass the time. I will update as things change.

Lee

Friday, November 27, 2009 9:19 AM CST

We have had some interesting conversations with the Team from Sloan Kettering. JAke and I are going to fly back up on to NYC Sunday December 6th. He is going to repeat the CT scan on Monday morning, and he will start MIBG Therapy on Tuesday. We have been scared to death for years about MIBG therapy, but now is the time. He has a small amount of disease in his hip, and the therapy works better with minimial disease. We are nervous, but ready. Jake has had his baseline labs drawn this morning, and we are waiting on a email from NYC to start the pre meds. I will keep you informed along the way.

Lee

Thursday, November 19, 2009 3:11 PM CST

Jake and Kim are back home! Jake has had scan week the past few days and is doing well. We do not have any results as of now, but I am sure they will call or email soon. As soon as I hear something I will update the site.

Lee

Wednesday, November 11, 2009 3:44 PM CST

Everything is going well. Jake continues to recover from the etopiside chemo. He is a little run down and tired, but he is battleing away. He is going to North Georgia this weekend to watch our friend Rhonda run in a marathon. Jake and Kim leave on Monday to head to NYC. SCAN WEEK! It will be Kim's first trip up since May. I will update as things change.

Lee

Tuesday, October 27, 2009 11:02 AM CDT

All in all things are pretty quiet. Jake is back at school. He is feeling better and on day 15 of 21 of Etoposide chemo. We received an email from NYC and the cancer is showing back up in his bone marrow. The spot of NB in his hip is "stable", and there are no other spots showing on his mibg scan. He will go back on November 16th and repeat all of the test. At some point the Etoposide will not work and we will move on to something else, but until then we will continue on this path. I will update as things change.

Lee

Tuesday, October 20, 2009 9:16 AM CDT

Jake is moving right along. He is on day 8 of 21 with his etopiside chemo, he is working at lee's too today, fall break at school, and he is doing well. He will get some blood work done later this week, but other than that, evrything will be normal. I am going to contact Dr. K today and set up Jake's next workup. I am thinking around November 16th, but I will let Dr. K make that call. Thanks for checking in, I will update as things change.

Lee

Thursday, October 15, 2009 2:59 PM CDT

BREAKING NEWS!!! Jake Miller is now 16 years old! Happy Birthday to Jake. It is hard to believe Jake is 16, it seems like just yesterday he and Luke were born. Time fly's when your haveing fun. The boys have a large birthday bash planned for Saturday. We have rented a large blow up jousting ring. They will bounce and fight each other with large padded sticks. I am sure Kim will take lots of pics and update the site. He started etoposide on Monday and is doing well. Thanks for checking on us and keep praying for stable or no disease.

Lee

Friday, October 9, 2009 9:14 AM CDT

We are home! It has been a fast week in NYC. Jake and I flew up on Monday. Jake was very calm, he did great on the ride to Jacksonville and had no problem with going. We arrived on Monday night and went to the Ronald House. I am very grateful for the Ronald Mcdonald House of New York, but it has changed dramatically. There has been some personel changes, and some structure and rule changes over the summer. It is a lot different than in the past. Tuesday Jake did some blood work, his platelets are at 235 thousand, which is great. Wednesday he did the MIBG, it came back stable, no change from July. This is GREAT news. Thursday we met with Kushner and he said "if it is not broke, don't fix it!" We came home last night. The "plan" for now is another round of etopiside, then return to NYC in November for another workup. I will keep you updated as things change.

Lee

Thursday, October 1, 2009 10:02 AM CDT

It is time to get back to work. Jake has had a great summer and early fall. He has felt good overall and has enjoyed his time at school. He does not know it yet, but we are headed back to NYC next Monday. He will do the full work up and we will see what happens next. I am not sure of the future, the scans will tell the story. I have no indecation of how things will go. In the spring, the plan was to start Jake on a new treatment this fall, but it will depend on what the NB is doing. He is non symptomatic right now, which is good. However, after battleing this for 8 years I have learned not to be to excited until we see the scans. Please pray for Jake to be clean and not to be too angry when he figures out we are headed back.

Lee

Tuesday, September 22, 2009 12:13 AM CDT

New Day! After 4 different dentist, in 4 different locations, Jake finally got some relief. Unfortunatly, his teeth could not be fixed yesterday. He has too much infection in his front tooth. He has started an antibiotic, and will go back in a couple of weeks. His face is still swollen,and his mouth is very sore. He has been able to eat some soft foods today. He went to school this morning, but asked to be checked out at lunch. I am hopeing to get him back to 100% before we go to NYC on October 5th. Please pray for quick healing of his mouth.

Lee

Monday, September 21, 2009 10:09 AM CDT

Murphey's Law! We live in a football crazy town. Jake's high school football team is #10 in the NATION! This time of year everyone is football crazy. Our Church has a outreach ministy for the youth of Lowndes County every year called "Mud Bowl" on October 10th . Basically, we have a old pond at our church that we plow up and fill up with water and mud and the youth of the church play an all day flag football tournamnet. It really is fun to watch. This year Luke is a team captain. We will have over 150 kids playing on 12 teams. Jake wanted to play this year. Yesterday was the first Mud bowl practice. Unfortunatly, Jake was accidentally hit in the mouth, causing his top front tooth to BREAK! It just seems like Jake can not catch a break in life. He is at the dentist this morning getting an emergency root canal. After the pain and swelling goes down they will put a crown on in a few days, until then he will be a snaggle tooth. He is in pain, embaressed, and just agravated. Please pray for quick healing and limited pain. I think I am going to get him to help "coach" and stay out of harms way. On another note, we are headed back to NYC on October 5th for scans.

Lee

Friday, September 4, 2009 11:03 AM CDT

Jake is feeling great! He has had a couple good days at school, his daily chemo is uneventful, and he is getting ready for his first high school dance! Tomorrow night, he is attending the Lowndes High School Homecoming dance. Kim and I are so grateful that Jake is getting this opportunity. We take for granted so many of life's pleasures. When Jake gets to do something he has never done before it is always exciting. I am sure Kim will have lots of new pictures to post on Sunday. Please continue to pray that Jake will have many more life experiances to come.

Lee

Wednesday, September 2, 2009 3:01 PM CDT

Jake is feeling much better. He went back to school today. We are very concerned, there is still a lot of flu bug floating around. But, he can't live in a bubble. It was interesting to me that he wanted to go back. It was not too long ago we would have to force him to go. He started Etoposide chemo last Monday and is tollerating it well. Luke has a baseball showcase next weekend in Atlanta and we are going up a day early for a check up at the Atlanta clinic. One of Kim's friends, Rhonda Hicks, is running the Chickamauga Battlefield Marathon on November 14th to raise awarness of NB cancer. Luke has decided he wants to join her. I have registered Luke for the half marathon that same day. It should be a great weekend. We heard from NYC today and are setting up Jake's next scans for October 5th week. He will attend school and be "normal" for a few more weeks.
Lee

Thursday, August 27, 2009 1:44 PM CDT

Okay, we are starting to get some direction from the folks in NYC. I had a couple of emails yesterday from Dr. Kushner. First of all, Jake can not go to NYC in the current shape he is in. It would be too dangerous for all of the other patients and he would have difficulty traveling. So, it has been deceided that he will stay in Valdosta for the month of September and completely recover from the h1n1 flu. He is at home resting and getting better everyday. He still has some flu symptoms, cough and head ache. He is takeing antibiotics and tylenol and has started a cough medicine. He will start a third round of Etoposide chemo at home next week to buy some more time. This will be a 21 day cycle and then a week to recover and if he is healthy we will fly to NYC for scans the first week of October. Overall, I am pleased with this plan. Jake is extremely happy he gets another month of downtime. He has no signs of NB cancer at this time. His last scans in July were very good and Dr. Kushner is okay with the addtional month. I will update as things change.

Lee

Wednesday, August 26, 2009 11:17 AM CDT

Jake is recovering at home. His appetite has returned and boredom has set in. He still has a cough, but the sore throat is much better. I am not sure what needs to happen before we go back to NYC. I am emailing back and forth with Dr. Kushner but as of now we have no plans. I will update again once we get some direction.

Lee

Tuesday, August 25, 2009 9:05 AM CDT

Jake is home. We have had 3 days of antibiotics to coat his system. He has not had fever since Sunday night. He still has a sore throat and aches. We missed our plane to NYC yesterday. I have sent multiple emails to NYC, but have received NO RESPONSE. I know they are very busy, but...I am assumeing they do not want us up there until he completly recovers, which will be 1 to 3 more weeks. I will update as he starts his recovery process.

Lee

Sunday, August 23, 2009 11:26 AM CDT

Jake has been admitted to South Georgia Medical with swine flu. He is feeling terrible. They are giving him antibiotics around the clock to cover him from getting any secondary infections. There is nothing you can do for the flu besides treat the symptoms which is what we are doing. We are keeping him hydrated and of course we have emails in to NYC to see what else we need to be doing. Jake and Lee were scheduled to fly up on Monday, but I do not see that happening. We are very thankful that he did not go in to this neutrapenic his counts are pretty good. His anc is not off the charts or anything but he is above the 1000 level. Please pray for his immune system to fight off this flu as soon as possible. His throat is the worse pain he is having and he is also battling high fevers which makes the throat ten times worse.

Thanks for checking in and please keep Jake in your prayers,
Kim

Saturday, August 22, 2009 2:11 PM CDT

Jake came home from school yesterday with a fever. He has a sore throat and mild cough. Kim and I decided this morning to take him to South Georgia medical and they have admitted him. It is probably a normal bug, but it is better to be safe than sorry. His fever is broke and his counts are good. He will get 24hours of antibiotics and blood cultures. We are headed to NYC on Monday. Hopefully, this will not cause a delay in travel. I will update as things change.

Lee

Tuesday, August 18, 2009 1:14 PM CDT

We have our travel plans set. Jake and I are headed up to NYC next Monday August 24th. We will do an office visit on Tuesday, mibg injection and ct on Wednesday, mibg scan and mri on Thursday, and bone marrow pull on Friday. We will hang out over the weekend and go back in Monday August 31 for the "here's the plan" talk with Kushner. Jake does not know we are going, please pray he is calm when he finds out. We have found it is eaiser on him when he does not have time to think about it. I will update as things change.

Lee

Monday, August 10, 2009 10:38 AM CDT

Jake is doing great. He has started school and is enjoying it. The new bookstore is stocked and ready for customers. Now it is time to head back to NYC. I have emailed Dr. Kushner to get our scans scheduled and we will probably head up in 2 weeks. Once I get the confirmation for NYC, I will buy plane tickets and set up our travel. Summer is over and it is time to get back to work. I am not sure what Dr. Kushner will want to do this fall, after scans he will make the plan. I will let everyone know as things change.

Lee

Tuesday, August 4, 2009 9:43 AM CDT

Wow, the summer if flying by! Jake is feeling great. He has had an amazing summer. He is working everyday at the bookstore. He has been putting in 12 hour days with our new location opening. He has finished his 2 round of etopiside with no complications. He will start his SOPHMORE year of high school tomorrow. He is very excited. Kim and I are grateful to have had such a wonderful summer. We are unsure of the "next step". After a couple more weeks of normality, it is back to NYC for scans and discussions of treatments. He feels so good, it is hard to think about what to do next. I think we will get started on something soon, but we will enjoy our time as long as we can.

Lee

Tuesday, July 21, 2009 9:02 AM CDT

Jake's bone marrow is CLEAN!! It has been 3 years since his marrow was clean. We are very thankful for this. He still has spots on his bones, but no marrow! We are in Fort Myers at Luke's Perfect Game Baseball week. Life is GREAT right now. We will head back up in the end of August for another check up and go from there.

Lee

Friday, July 10, 2009 5:12 PM CDT

We are at the airport headed home. It has been a fast and furious couple of days. The MIBG scan looks "pretty good" according to Dr. Kushner. It is unchanged from the last one. This means we have no progression in Jake's cancer. The MRI of the liver is "improved" according to Dr. Kushner. Jake's platelets are over 220 thousand and his blood looks good. We will not have the results from the bone marrows until middle of next week. We have another 21 day cycle of Etoposide for the ride home. The "plan"as of now is to return back up to NYC in August for another check up and then go into a treatment based on those results. We are in a holding pattern trying to have some normality of life for the summer. Please pray for guidance and good choices as they are presented over the next few weeks.

Lee

Monday, July 6, 2009 10:28 AM CDT

It is time to return to the fight! SCAN WEEK!! Jake has had a wonderful 30 day break, but it has been way to quick. We are headed to NYC tomorrow for test and a check up. He does not know, it is too hard on him if he has time to think about it. We have tried several different ways to help him deal with the anxiety of going to NYC, but none have worked. So the best way is not to tell him until we are on the way to the airport. This trip will decide the "next step". It could be as simple as go home and do oral chemo for 30 more days and come back, or it could be a little more complicated. The cancer is the deciding factor. He is not experiencing any pain, which I am grateful for, but you never know what the cancer is doing until you do the test. Please pray for easy travels and great scans. I will update as things change.

Lee

Friday, June 19, 2009 9:08 AM CDT

Summer is going great! Jake is getting stronger, resting well, and enjoying everyday. We have a collection of buddies that are at the house everyday. He is swimming, playing XBOX 360, and going to baseball games. He has had no problems with the daily chemo and has had no symptoms of cancer. We heard from NYC yesterday and are scheduled for a checkup on July 8th. If everything is fine, he will get to come home and repeat the same chemo for 30 more days. Thanks for checking in on us and I will update as things change.

Lee

Monday, June 8, 2009 8:37 AM CDT

We are in summer mode! The plan as of now is to put Jake on an oral chemo for the next 30 days and then return to NYC in July for work ups and scans. If everything is okay, we will repeat the same thing for 30 more days and return in August. The long term plan is to take part in the new NK cell study in the fall. Jake will get a few months to build back up and have some fun. I will update along the way.

Lee

Tuesday, June 2, 2009 8:25 AM CDT

Dr. Kushner emailed last night with the preliminary scan results, NO Uptake in the liver! That means the "odd spots" on the liver are most likely fungal. The Neuroblastoma sites in Jake's bones are "unchanged". We were hoping the high dose round of chemo would have eliminated them, but at least there are no additional spots in his bones. Unfortunately, we could not do a bone marrow pull, so we have no indication of the amount of involvement in his marrow. The team will meet tonight and discuss the next step of treatment. Please pray for wisdom and guidance as we are deciding the next step for Jake. Often in fighting the disease difficult choices have to be made that will affect Jake for the rest of his life. I think the choice will be to maintain him in the current state with something light, until something better comes in the future, or hit him with something heavy to try to eliminate it and hope it does not come back. I will update as things change.

Lee

Monday, June 1, 2009 9:33 AM CDT

We are HOME!! It was a long 6 weeks of treatment,procedures, and boredom, but it was very successful. Jake produced 8.3 million stem cells last week and he now has 4 rescues available for future treatments! It was a painful and long process, but very successful. The only negative thing we have right now is there is some odd activity that showed in Jake's liver on a CT scan last week. He had a mibg scan on Saturday and we are waiting on the results to get a better idea what is going on. Jake has lost a great deal of weight. He will put it back on and rest up over the next few weeks. I will update again when we have the final results from the mibg.

Lee

Tuesday, May 26, 2009 1:58 PM CDT

NEW UPDATE TUESDAY EVENING:
Count is in they collected 2.1 million stem cells today. That is an incredible number for the first day. That is enough stem cells for one rescue after a treatment. We are thrilled and so are the doctors. We are going to go one more day and see how many more we can come up with.

Jake gritted his teeth dug in and got it done. The line is placed and we are collecting the stem cells. Please please pray that we get the amount Jake will need for any future treatments that he may undergo. We have been given a miracle that he is even able to try, but we know that God performs miracles every second and we are trusting in Him for a big one right now.

We will more than likely not get a count until tomorrow because they do not do any counting after 4:30. We feel certain that it is going to take at least two days and more than likely three or four. Jake has to stay in the hospital until we are done because the line had to be placed in his groin.

Thanks for checking in on us and I will update as the collection continues.

Kim

Monday, May 25, 2009 9:53 AM CDT

It is a beautiful day here in NYC. I arrived Saturday to find Jake in fairly good spirits. Unfortunately still saying he does not want to harvest stem cells and he is ready to go home. We have had a good weekend together. We are fixing to go for a walk through the streets of Manhattan and come back to the house for a Memorial Day BBQ.

We will head to the clinic bright and early tomorrow morning for one more test to get another cd34 count before we do line placement. They do not want to put Jake through it if he is not producing enough cd34's. Lee and I are both so torn it breaks our hearts to have to make him do something he is totally against, but we both are so aware of how critical it is to gather stemcells. Please join us in praying for guidance as we step into the next few days. Please pray for strength and tolerance for Jake.

Thanks for checking on us and please enjoy your day,
Kim

Friday, May 22, 2009 4:30 PM CDT

What a stressful day! It has been a roller coaster ride all day. first of all, I have been struggling with the whole stem cell harvest issue. Jake is absolutely against it. His concern is the PAIN involved in it. He point blank told Dr. Kushner last week that he was NOT going to do it. I did not think it would matter, because his blood has to produce a marker called cd-34 and it is unlikely that it will. Wednesday his cd-34 marker was at 0. In 2002 when we tried this procedure his cd-34 marker was 0 also. He has had over 75 rounds of chemo and a bone marrow transplant, so the cd-34 should stay at 0. He has been in NYC for over 4 weeks now and is terribbly home sick. This morning we came to the clinic and drew blood and waited. While we were waiting he convinced me to buy our airline tickets for tomorrow($700). We have packed all of our stuff and we are ready for home. This afternoon the cd-34 marker came back... it is on the rise, over 1000. This is a holiday weekend and the clinic is closed until Tuesday. We have to continue triple dose G-csf for the next 4 days and recheck him on Tuesday. If the cd-34 is still on the rise, he will have a line surgically implanted in a painful place and the we will start the 2 to 5 day procedure. It is horrifying and aggravating! But, if we get stem cells, it will open up many addtional treatment options for Jake, if we don't his chances for survival are very slim. So, the week or so of pain may or may not save his life. This sucks! I hate cancer! Kim is coming up tomorrow to help through this and the rest of the world is on hold.

Lee

Tuesday, May 19, 2009 11:37 PM CDT

We are free! Jake's anc hit 600 this afternoon and we walked out of the hospital at 7 pm. 13 long days and nights, but I am thankful they are so cautious. We will get tomorrow off, and return to the clinic on Thursday. Please pray for guidance and that Jake will get on board with the stem cell harvest. Last week he stressed out about the possible harvest and told Dr. Kushner he would NOT do it. Dr. Kushner agreed and went on to schedule it anyway and then went out of town this week. Thursday we are meeting with Dr. Modak to discuss the procedure with Jake. I have a bad feeling that Jake is not going to be receptive. Jake is old enough to have some input on his treatment, but I am having a hard time deciding how much input he should have. We will hang out tomorrow and deal with it on Thursday.

Lee

Sunday, May 17, 2009 12:36 AM CDT

Still no white blood cells. We did get moved off the 9Th floor to a private room this weekend. Jake is feeling fine he is playing xbox 360, toontown, and watching TV. It is a little unclear on the "next step". Jake wants to take 7 weeks off, I am not sure where he came up with that number? He is eating better, and starting to get cabin fever. Hopefully his counts will rise soon.

Lee

Friday, May 15, 2009 1:56 PM CDT

Jake's counts still are horrible! He has been in the hospital for 9 LONG days now. He has not been eating for the last 3 days. He is walking the hallways still, but he mostly just sits in the bed. He became stressed out yesterday about the stem cell harvest, so as of now it has been canceled. Dr. Kushner stopped by today, he did not have much to say though. I feel helpless at this point, it is all on Jake at this point. Hopefully his counts will rise soon.

Lee

Tuesday, May 12, 2009 5:49 PM CDT

Well, nothing new to report. We received a couple of units of whole blood today and we are currently receiving a bag of platelets. This is all par for the course. We still have no activity on the white cell count. Dr. Kushner came in and said it would more than likely be another week. I broke down yesterday and brought the xbox to the hospital to give him something else to do. I do not know how he does it, but he is actually still smiling. He makes it easy for the rest of us to keep our spirits up. Don't get me wrong he is more than ready to come home, but he is making the best out of a bad situation. It is a blessing to watch how he handles himself as he battles his way through all of this. He amazes me everyday.

Thank you for your constant prayers,
Kim

Saturday, May 9, 2009 6:48 PM CDT

Jake is feeling fine. He has not had a fever since one hour after we checked in to urgent care. However, once you enter you are stuck until counts recover and we have no idea how long that will take. I am so thankful he is not sick, but it sticks having to be here when you do not feel bad. He is extemely bored, but he is a real trooper. He never complains and has been entertaining himself the best he can. He is still smiling and even picking on Kala some. Kala arrived safely last night. She spent the night here at the hospital last night with Jake and I went back to the Ronald and was able to get a pretty good nights sleep.

The nurses are all doing the "count raising dance" for him and with all of your prayers maybe we will not be here much longer. He is really wanting to take Kala to the zoo before we leave on thursday. Lee is flying up on Wed. and swapping with me and Kala.

Thanks for checking in and thanks for all prayers.

Happy Mother's Day,
Kim

Thursday, May 7, 2009 11:52 AM CDT

Jake has a fever. The fever came last night at 8:00. Kim and Jake went to urgent care and got checked out. He was admitted this mourning around 4:30 and they have given high platelets and antibiotics. His fever is down, but he will be trapped inpatient until his counts begin to rise. Kala is headed up there tomorrow to help out. I will update as things change.

Lee

Monday, May 4, 2009 12:02 AM CDT

Jake and Kim are relaxing in the Ronald McDonald house. Jake will start crashing anytime. He will have daily blood draws and checkups at the clinic starting tomorrow. He is in good spirits so far. I am sending his XBOX 360 up by ups today to give him something else to do. He is still eating and drinking well and seems to be fine with the extended stay. I will update as things change.

Lee

Monday, May 4, 2009 11:44 AM CDT

Lee went back to Valdosta on Sunday; so, Jake and I have been laying low the last two days. He doesn't have to go back to the clinic until Tuesday. We will be checking labs Tuesday and see where Jake stands. Thank you so much for your prayers last week. We were definetly given a miracle last week. Jake did not get sick one time and did not even miss a meal. Being able to eat and drink is such a blessing. It has allowed Jake to keep up his strength and he is feeling good this week. He is in real good spirits. We need your prayers again. We are praying for no fever which will be another miracle.

Kala will be finished with her finals on Thursday and she is flying up on Friday to hang out with us and help out.

Thanks again for checking in,
Kim

Friday, May 1, 2009 1:34 PM CDT

Day 5--- at 3 am this morning Jake got his lines hung on the bottom of the bathroom door. I checked him out and thought everything was fine. Unfortunately, I was wrong. He pulled loose his lines from his mediport. At 5 am the alarm started going off in the backpack of fluid and mesna. Kim and I both check on it and the display read "high pressure". He was laying on his stomach and once he rolled over to his back, the alarm stopped. At 7:30 we got him up to change his clothes and noticed his shirt was wet. He took his shirt off and there was a LARGE bulge on his chest around his mediport. The line was out of the port but still under the skin. All of the fluid and mesna for 4.5 hours was trapped between his skin and tissue. We all 3 freaked out and ran the 5 blocks to the hospital. After checking everything out it was decided to access his arm for today's treatment and allow the fluid to slowly absorb into his chest. We are staying in the hospital tonight for observation to make sure the bulge of fluid goes away. Just another fun day in fighting this terrible disease. Please pray for an uneventful night and the fluid will absorb normally and we can get out tomorrow.

Lee

Thursday, April 30, 2009 3:34 PM CDT

4 days of treatment down, 1 to go! Jake continues to stay strong, he is eating and drinking normally. He does not feel very good, but he does what he needs to do. He is sleeping a lot, and is having leg cramps. Other than the leg cramps, he is not experiencing any other side affects to this point. Dr. Modak came in his room today and laid out "the plan" in front of him. Needless to say Jake was very disappointed. As a matter of fact you could even say angry. But it is what it is and Jake will do what needs to be done. "The plan" as of now(it will change) is for Jake to finish ICE tomorrow and lay low in NYC next week. His counts will crash and he will need multiple transfusions. Hopefully, the fevers will NOT come from low counts and he can breeze through next week. After that he will start to rebound and we are going to try to retrieve Stem Cells for future treatments. This is critical for the future of Jake's care and the odds are not good that we can get them. But we have to try. Jake had a bone marrow transplant in 2002 and most of the time stem cells harvest is not successful for post transplant kids. Jake is usually an exception to most rules, we are hoping the stem cell harvest post transplant is one of the exceptions! After a week of trying for stem Cells, we will have MIBG and Bone marrow pulls to see if the ICE has worked. So, Jake will be in NYC until June most likely.

Lee

Wednesday, April 29, 2009 12:28 AM CDT

Day 2 was uneventful, and day 3 is good so far. Jake is resting well, eating well, and doing well overall. He walked back to the Ronald house yesterday and ate a large meal. I am amazed at Jake's strength and I hope it continues. Thanks for all the prayer, please continue!

Lee

Monday, April 27, 2009 7:50 PM CDT

Day 1 is complete. JAke has done GREAT so far. He slept most of the day at the hospital. He wanted Chinese for dinner and had 2 full plates. The only side effect has been a terrible case of hiccups. He is tired, but is alert and playing on his computer. Dr. Kushner was very kind and calm this morning. He is smart and knows Kim and i feed off of his emotions and Jake feeds off of ours. The discussion with him was brief,as always, but very positive and to the point. We are going to take it one day at a time and adjust Jake's meds as needed. Many thanks to all who are praying and thanks for the encouraging phone calls and emails. I will update tomorrow.

Lee

Saturday, April 25, 2009 8:17 PM CDT

We have arrived. Jake, Kim and I arrived in NYC today and are gearing up for Monday. We are going to rest and prepare for a long day Monday. Jake will start I.C.E. chemo on Monday here at MSKCC in NYC. I am optimistic that this round will be uneventful and do the damage it needs to do to the NB cancer that is running through his bone marrow. I am trying to prepare for the worst and hope for the best. I am sure that Jake will endure and overcome the next few days. It is so Great to have Kim here with us. In the 5 years of treatment here in NYC I think that Kim and I have only been together 2 other times. Having her here will help both Jake and me. Please continue to pray for a good response to the chemo and a clear path for future treatments to kill this awful disease.

Lee

Wednesday, April 22, 2009 12:28 AM CDT

Dr. Kushner has called. He was his typical calming and positive self. He wants us to be in NYC by Monday to start treatment. I m going to take Kim along with us this trip. There will be many decisions that will have to be made once we start and it will be better for both of us to be there. Jake is still unaware of the treatment, we plan on telling him tomorrow. Please be in prayer that he will handle the news and have the strength to endure the chemo that he is taking.

Lee

Tuesday, April 21, 2009 1:57 PM CDT

UNBELIVEABLE!!! I just heard from Dr. George in Atlanta, his words are ringging in my head "after reviewing Jake's history, we will NOT be able to give him any chemotherapy at our facility in Atlanta, we do not feel that it is safe to continue treating Jake". He also mentioned that Jake had far exceeded their expectations of survival. Sometimes in life we have to get "kicked in the head" to make us start thinking. I am waiting on a phone call now from Dr. Kusner to discuss what day Jake will be able to start treatment in NYC. I am hopeing it will be next Monday. I will post again after I hear from him.

Lee

Friday, April 17, 2009 12:55 AM CDT

NEW UPDATE: MONDAY APRIL 2OTH
As always in the cancer world things change. They were not able to get everything together by this morning; so, our meeting will hopefully be later this week. We actually do not have a date yet, but prayerfully it will not be but a day or so delay. Lee let the new doctor know that this is not something we are willing to wait around on. Lee or I will update as soon as we know when we are headed.

We have a "new" plan of attack. Jake, Kim and I are going to go to Atlanta on Monday and meet with a Dr. Katzenstein at Emory University Egleston Campus. We are "probably" still going to do the round of high dose chemo, ICE. Dr. Kushner is faxing all of Jake's history from MSKCC to Dr. Katzenstein and he is going to review it this weekend and meet with us on Monday. We are going to hopefully establish a new line of communications with CHOA in Atlanta and maybe we can once again do some of the standard treatments here in Georgia. Also, there may be additional things we can qualify for that may be helpful to Jake in future treatments. Please pray for Jake to be open to meeting with the new doctor.

Lee

Wednesday, April 15, 2009 10:10 AM CDT

CHECK OUT THE NEW DISNEY PHOTOS IN THE PHOTO SECTION!!

Sorry for the delay in updates, the "new" caringbridge changes are difficult to deal with. Dr. Kushner has emailed and wants Jake to come to NYC for I.C.E. This is a high dose chemo that is very powerful. Jake had ice in 2005 and handled it fine, so there is no reason to expect anything different. Jake's cancer is "slowly progressing" in his marrow. It is time to get this stuff knocked out. I will update after we get more definite plans.

Lee

Friday, April 10, 2009 8:34 PM CDT

Jake is doing well. He and I left NYC on Wednesday after finishing MIBG, MRI and marrow pulls. We met Kim,Kala,and Luke in Disney for some "fun time". His scans appear to be "unchanged" according to Dr. Kushner. He is going to think about the next step over the next few days. We will return to NYC on April 20th.

Lee

Thursday, April 2, 2009 8:42 AM CDT

Jake is continuing to get stronger. His counts are climbing and he is gaining strength. He has been in school this week and is playing basketball everyday. We are returning to NYC next Tuesday for work ups and test. It is uncertain if we will be staying for treatment or returning home to take a round of oral temadore. The scans results will be the deciding factor. I will update as the situation changes.
Lee

Friday, March 27, 2009 5:06 PM CDT

Jake was able to return to school today, but unfortunately only got to go half a day. We went and had his blood checked before school and when I got the results he needed a platelet transfusion. I had to go pick him up around lunch so we could go get tanked up for the weekend. His hemaglobin had risen from Wednesday; so, hopefully today will be the last transfusion he needs after this round. His anc is very good right now.

He is feeling good. He has not had any back pain for over a week now. He has not been very active over the last week, but he did shoot basketball one day and did not have any problems. We are not sure what to think, but we are praying and hoping for the best.

Lee and Jake are heading back to NYC the week of April 6th to do an mri and mibg scan. We will know for sure what is going on after those scans. We are praying for an uneventful week next week. Hopefully he will be able to go to school all week and get some work got up.

Thanks for checking on us,
Kim

Wednesday, March 25, 2009 12:59 AM CDT

Jake's counts are starting to rise! He had platelet and whole blood transfusions on Monday and today his ANC is at 1617! His platelets are still not good, but his hemoglobin is staying strong. He will need more platelets, but that is a simple fix. We have ask Dr. Kushner for some extra time to recover and return to NYC the week of April 6Th. He has not responded yet, but I am sure he will.Hopefully, Jake will return to school over the next few days and continue to get stronger. I will update as things change. Thanks for all of the prayers!

Lee

Monday, March 23, 2009 2:39 PM CDT

Jake's counts were terrible. He is at our local hospital getting two units of platelets and 2 units of whole blood. His white cells have reason a little bit. His anc is now over 300. We need his anc to be over 1000. Once it starts rising it usually does so rather quickly; so, I am thinking it will be over 1000 by Wed. It may take the rest of this week for his platelets to bounce and stay there. This is the first whole blood transfusion he has had in over a year; so, hopefully this will be the only one he needs after this round. Lee and Jake went to the hopital around 2:00 and I am goin to tag with Lee at 5:00. Jake and I will more than likely be there until around 8:00 or 9:00 tonight. It takes a long time for whole blood to transfuse. It takes at least two hours to get the type and cross done to get the blood he needs to even start. Once we get his blood it takes about three hours to transfuse. Platelets only take about 30 to 45 mins per bag. It will be a long day, but he has his laptop and South Georgia has wireless. Jake will be content to lay there and play on the computer for hours. We love our local hospital we just wish we could do more with them. It makes it so much easier when he is 15 minutes from the house. Lee and I are able to help each other more and we also have my parents plus all our friends to help out as well. We get spoiled real fast hanging out here with so much help.

Please keep praying,
Kim

Monday, March 23, 2009 7:50 AM CDT

A new week and a new "deal". Jake and Kim returned from Atlanta this weekend. He has NOT had the back pain problem since Thursday. He had a platelet transfusion on Friday and then they sent him home. He will get his counts checked today at SGM here in Valdosta and we will see how things look. The plan is to get his counts up and return to NYC for radiation therapy ASAP. I am thinking a few more days of recovery in his own bed will help to strengthen him for the treatment he is about to endure. I will update as things change this week, which they will.

Lee

Wednesday, March 18, 2009 7:37 PM CDT

Jake and I are in Atlanta. Jake has been experiencing backpain. It seems to be when he is too active. Thankfully he has been able to manage the pain without medication, but it is still cause for alarm. Our plans have changed as soon as we get his counts where he can travel we are headed for NYC. They are considering radiation for the areas around his spine that are causing the pain. We are also concerned about the increase in bone marrow activity. We do not want to give this a chance to move to other areas; so, we are going to have to get more aggressive. I will update as soon as I know anything else. We need your prayers so much right now.

Please pray,
Kim

Saturday, March 14, 2009 8:10 PM CDT

The boys made it home late last night. Jake seems to be feeling pretty good. He has a little bit of stomach issues, but nothing major. Lee did find out right before they left NYC that Jake's bone marrow has shown more uptake than last time. We have not received an official report and we do not know if this is going to change his treatment or not. We are going to stay on top of this and will be contacting the doctors next week and see if we need to adjust the game plan.

Please say extra prayers we do not want this to be able to spread which is a possibility with increased marrow activity. At this point we do not know anything, but like I said we will be finding out more as the week begins.

Kim

Tuesday, March 10, 2009 11:58 AM CDT

The boys are doing pretty good in NY. Jake is on day two of chemo and so far so good. He had a little bit of cramping last night, but Lee gave him one of his many pill choices and he slept. I spoke with Lee this morning and Jake was doing fine. He is just kicked back on the computer and watching a little tv. (Lee is waiting on him to fall asleep so he can have a turn on the computer)

I will be picking them up from the airport late Friday night and we will just hang low for a week or so while counts recover.

Thanks for looking in on us,
Kim

Friday, March 6, 2009 9:17 AM CST

UPDATE:
Jake's scans are completely unchanged from 30 days ago. We would have loved improved scans, but this is the next best thing. The plan right now is to do the same chemo again starting Monday. Then he will bring two rounds of temedore home with him for the months of April and May. He will then rescan on the first week of June. As long as Jake does not develop any pain this will be the plan. Jake is very excited because this allows him to finish the school year and to continue being the manager for the baseball team. This is a major praise thank you all for your prayers. We would like to also add another praise. Dr. Kushner said that Jake's liver function was absolutely perfect which is a major blessing after all the years he has been doing this.

We have completed all of the scans. Dr. Kushner emailed Lee and they are meeting around 12:00 today. Lee did look at the scans yesterday, but really doesn't have a good read on them. He said he thought he saw a couple of new spots, but the spots that were in his back from last time looked a little better. We do feel like more chemo is in Jake's future. We just do not know what kind or how much. We should get some answers today and I will update asap. Please continue to pray that the scans are improved. Pray for a clear path. Pray for Jake's strength and endurance in this battle and please pray for the cure.

Kim

Wednesday, March 4, 2009 9:18 PM CST

Jake's Mibg scan is in the morning at 9:30. Hopefully we will get a tech that will let Lee view the scans. Please pray for improved scans. I will update as soon as we know anything.

Kim

Monday, March 2, 2009 9:24 PM CST

Well the nerves are officially in overdrive. Lee and Jake are headed to NYC for scans. They will meet with the doctors tomorrow and scans will be Wed and Thurs. We will then have to wait and see what the scans show to know what will happen next. This will be a tough week as we wait to see what we will do next. This is the hardest for Lee and I - the waiting for the gameplan. We hate this game we are in, but since we are here we are always impatiently waiting for the gameplan. I am not sure why, but we always seem to feel better once we have a gameplan. So, first of all please pray for God's healing and then help us pray for that perfect gameplan.

Love you all,
Kim

Tuesday, February 24, 2009 2:39 PM CST

We actually did Jake's bloodwork today instead of yesterday. I did not update - but we made a quick trip to the emergency room Friday night at 11:00 with Jake. We had sat out on the ballfield in the freezing cold for three hours Friday night at Luke's ballgame and a couple of hours after we got home Jake experienced one of his famous nosebleeds. Of course it stopped on the way to the emergency room after pouring for over thirty minutes, but we went on to be sure. Jake's platelets had only been 31,000 the day before and we transfuse under 20,000. His bloodwork showed his platelets at 28,000 so we did not have to do anything and we returned home at about 2:00a.m. Just another fun night!
Jake's labs today are much improved on the platelet and hemaglobin side of things. His platelets are up to 87,000 and his hema is 10.0. His ANC is still good as well. It is good to see those platelets rise we just need them to keep going; so, he will be in good shape for whatever the next step is. Please begin praying for our scans next week. All the scans will begin on Wed. of next week. We are praying for much improved results.

Thanks,
Kim

Friday, February 20, 2009 7:51 AM CST

Good Morning Everyone,

Jake is back at school and doing great. He did bloodwork yesterday afternoon. His ANC is up to 2765 which is great. His platelets have held at 31,000 since his transfusion on Monday. His platelets are still very low, but it is good that they are holding. His hemaglobin has dropped, but it is not at transfusion level.
On a much happier note - Jake has been asked by the Lowndes High Baseball Coaches to be the manager for the team. Jake is so excited. I would like to say a thank you to Jake's teacher Ms. Elliott for helping to make this happen. Thanks - Ms. Elliott.

Thanks for checking on us,
Kim

We will being doing Jake's bloodwork again on Monday.

Wednesday, February 18, 2009 7:15 AM CST

Jake is back at school. He will actually on go the rest of this week and next before he has to be back in NYC for scans. They are going to rescan the first week of March. He is always a little nervous about going back to school after being out so many days, but in the end he is more excited than nervous.

Kim

Monday, February 16, 2009 6:14 PM CST

Jake and I have just returned from South Georgia Medical where we had another platelet transfusion. Jake's platelets were at 13,000. His ANC was at 1810 so he will be able to return to school after winter break. He still feels good, a little bruised up from lack of platelets and being a boy.

Have a good night,
Kim

Friday, February 13, 2009 8:26 PM CST

Jake is home! He and Kim returned today after a brief visit to Atlanta for a check up. He received platelets and is doing well. He will have a quite weekend playing XBOX 360 and hanging out with buddies. He has an anc of less than 100, but hopefully will start "bouncing" this weekend. I will update on Monday after labs.

Lee

Tuesday, February 10, 2009 6:00 PM CST

Well, Jake and I got halfway to Atlanta when we received word that they had not scheduled an appointment until Thursday. (not quite sure how that happened) Atlanta is alot different that NYC they do not appreciate you just dropping in; so, we turned around and came back to Valdosta. Jake has had two nosebleeds today; so, we did labs here in Valdosta. His platelets are at 36,000 so he is not quite at transfusion level, but he more than likely will be by Thursday. He is anc is below 1000 so we are staying staying out of public places. Jake is feeling good and is working on catching up on some of his school work as I am typing this update. Please pray for no fevers. Also, say lots of prayers we have found an adult oncologist here in Valdosta that is going to talk with Dr. Kushner to see if he can help us with recovery here in Valdosta. We have many obstacles to overcome to make that happen, but he is at least willing to look into it for us.

Thanks,
Kim

Saturday, February 7, 2009 8:28 PM CST

Everyone is home safe and sound. It is warm again in Valdosta and we have had a wonderful day. Jake has felt great today. He has hit in the batting cage and played basketball. We are always so thankful for a day like today and we pray for lots more of them. Thank you for all of your prayers this past week and thanks for checking in.

Kim

Friday, February 6, 2009 1:35 PM CST

Jake is through with this round of chemo. The nausea medicine they have been giving him as continued to do its job. Lee and Jake are flying out of NYC late tonight and will arrive in Jacksonville around midnight. Pray for safe travel all around. I will be driving down to get them from the airport. It will be a late night, but well worth it to have them home. Jake and I will head to Atlanta on Tuesday for bloodwork. We will be hanging out it Atlanta for a week or so while we keep tabs over his blood. Of course we also have to watch for fever if that develops it is an automatic three day admittance. Please help us pray for no fever. Thanks again for always checking on us.

Love,
Kim

Wednesday, February 4, 2009 11:53 AM CST

I just wanted to give a quick update. Jake is tolerating the chemo well. I just spoke with Lee and they are eating Shrimp Lo Mein while he is getting the chemo at the clinic. With this chemo he is sent home with backpack buddy to keep him hydrated to help flush away the chemo. Since he is eating and drinking so well he gets to leave backpack buddy at the hospital today. Having to do chemo is awful, but thanks to all of the prayers the meds are working to control the sickness which is a definite prayer answered.

Thank you and keep them coming,
Kim

Tuesday, February 3, 2009 8:47 AM CST

Day 1 was uneventful! Jake handled the dose well and was able to continue eating and drinking. He slept soundly during the night and was able to eat breakfast this morning. Jake is focused and the task at hand and will continue to fight and battle this terrible disease. Thank you for all of your prayers and support. Jake and I really appreciate hearing from everyone.

Lee

Monday, February 2, 2009 9:06 AM CST

The final decision has been made - Jake will be doing the same medium dose of chemo he did in the fall. He is currently in the IV room waiting to be accessed and get started. We have not been given any word as to how many rounds he will have. All we know for now is what he is doing this week. Jake has once again become the warrior that he has been all along - he is ready to fight once again.
Keep praying for our miracle.
Love
Kim

Friday, January 30, 2009 11:09 AM CST

Jake's new spots are around his spine. They are scheduling an MRI to determine that it is not soft tissue. The options that we have been given for treatment are: the same medium dose of chemo he had in the fall or MIBG therapy. I do not think MIBG therapy will be an option because he does not have enough stem cells for a rescue. 3F8 is not a possiblility at this time because he has new disease. 3f8 may be an option after a couple of rounds of chemo. Jake's blood is in great shape; so, prayerfully he should be able to recover from the chemo. He is in a little better frame of mind, but we are still taking things one day at a time with him.

Please continue your prayers for our family.
Kim

Thursday, January 29, 2009 11:02 AM CST

UPDATE: We just received an email from Dr. Kushner and Jake's MIBG showed some new spots. Lee and Jake will go to the clinic to discuss the new spots and the new plan.

2nd Update: WE NEED YOUR PRAYERS! I have just spoken with Lee and Jake is in complete denial right now. He told Lee that the doctors were wrong he feels fine and that he is going home tomorrow. He is refusing to go to the clinic tomorrow or to do any treatment. Please pray that Jake will come to terms with things and get ready to fight once again.

I have just discovered that Lee has not updated, sorry about that. Lee and Jake are in NYC with the cold and snow doing scans this week. Jake had his big test (MIBG) this morning. He also had bone marrow pulls today. Lee and Jake are planning to return tomorrow with two more rounds of the pills Jake has been taking from home. Please pray that they do not find anything in the test results that will change those plans. Once again thank you so much for remembering us and checking in on us.

Kim

Monday, January 5, 2009 2:01 PM CST

Jake is doing great. He feels good and his hair is starting to finally grow back. He started another round of temador last night and will complete it by Friday. The plan is to return to NYC on Tuesday January 27th for work-ups and an evaluation. He will return to school this Wednesday and it should be fairly normal for the next couple of weeks. Book rush start in our bookstore this weekend and please pray for a lot of students to come in and buy their books. Thanks for checking on us and I will update as things change.

Lee

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