Steps leading to diagnosis
July 29, 1999
Jordan goes to pediatrician for a persistent cough. His doctor notices that his right lymph nodes behind his ear are slightly swollen. The doctor puts him on an antibiotic.
August 12, 1999
Jordan finishes his antibiotic and his cough is gone. However the nodes are still swollen. We call his doctor and he says that as long as they are not red, swollen, or hurting, then we do not need to be too concerned. just keep a check on them.
August 18, 1999
Jordan's lymph nodes are beginning to get a little larger and his cough is back. We call his doctor, and he wants to see him immediately. The doctor orders blood work and puts him back on the antibiotic. He wants to see Jordan in 2 weeks. (Blood work comes back completely normal.)
September 8, 1999
We are taking Jordan to the doctor for his follow-up appointment. The cough is gone, but lymph nodes are still swollen and getting larger. The doctor wants to try one more dose of antibiotic, but wants to see him in 5 days. (The doctor doesn't seem concerned because his blood work is normal.)
September 14, 1999
Hurricane Floyd cause St. Johns County to evacuate. Since this is where Jordan's doctor is we can't take him for his appointment.
September 16, 1999
St. Johns County is open, we take Jordan to see his doctor. By this time his lymph nodes are quite large. His doctor wants us to take him to Nemours Children's Clinic in Jacksonville to the Oncology/Hematology Department.
September 17, 1999
We take Jordan to Nemours and are directed to the 8th floor. We walk in and I see children with no hair. I keep telling myself that this is not where Jordan belongs, but deep down I know it is. We go in to see Dr. Pitel. He is quite concerned with the size of Jordan's lymph nodes. At this time they are so large you can see them protruding from his neck. Dr. Pitel wants to get a biopsy as soon as possible. He tells us that he will call us with a time. So we go home to wait out the weekend.
September 20, 1999
We finally get a call from Nemours. A biopsy is scheduled for Tuesday morning, September 21, 1999 at Wolfson's Children's Hospital. We are to be there at 8:30 a.m. Jordan is not feeling good at all today. He has no energy and his lymph nodes are swollen, red, and hurting. All I can do is pray and cry.
D - Day (Day of Diagnosis)
Tuesday - September 21, 1999
Today is my mother's birthday but I forgot to call her and wish her Happy Birthday. Anyway, she and my dad are going with us for the biopsy. We arrive at Wolfson's at 8:30. After we go through all the paper work the nurse calls us back. We go into a waiting area and the nurse gets all of Jordan's vitals done. The pathologist that is scheduled to do the biopsy comes in to talk with us. He explains what he will do and tells us that if he doesn't get a good sample on the first aspiration he will do a second one. The room is only big enough for one parent to go in. Jordan says he wants me to go in with him. Oh how I wish Randy could be in there too. We go in and the doctor does the biopsy (he had to get 2 samples.) The doctor tells us to wait back in the other room while he looks at the samples. Within 10 minutes the nurse comes in and gets us to go in a "conference room." I knew right then that it wasn't good. The doctor tells us that the cells are definitely cancerous but he can't pinpoint which type. He will send it for further testing and they will let us know by 2:00 pm that afternoon. So we have to go home and wait again. I will never forget those words. When I walked out and saw my mother I lost it. Randy and I got Jordan and Jacob to go home. That was the longest 65 miles of my life. As soon as we got home Randy left to go find his mom. Within 30 minutes of us being home, our pastor arrived to have prayer with us. I found out that my mom immediately called our church and started the prayer chain from the hospital. Many people kept coming by that day to pray and visit. The phone rang at 1:30. It was the doctor. He had good news and bad news. The bad news - yes the cells were cancer. But the good news is that it is most likely a type of leukemia that is not only treatable, but possibly curable. THANK YOU GOD!!! Dr. Pitel wants us to be back over there on Wednesday morning for a hospital admit. He says we will be there for about 5-7 days. Randy took Jacob outside and explained what was going on and he amazingly took it very well. A couple of the ladies from our church brought food for us that night and a cake. My family and Randy's family were all at our house for most of the day. After everyone left, Jordan walked over to the bar and saw the cake sitting there. He said "Mommy, we forget to sing Happy Birthday to Grandma." He thought we were having a party for her.
Sept 22, 1999
Hospital time. Jordan has new pajamas, bedroom shoes, and games. He is very apprehensive about what's going on but who isn't. We have told him that he has some bad stuff in his body called cancer that has made his neck sore and we have to go to the doctor to start getting better. I think he's doing great to only be 4!
Sept 23, 1999
Bone Marrow and spinal tap today! They are doing the bone marrow to pinpoint the type of leukemia and the spinal to see if it has spread to his central nervous system. The results are that he has Acute Lymphocytic Leukemia and no it is not in his central nervous system. THANK YOU GOD!!! We find out that Acute Lymphocytic Leukemia is very treatable and has an 80% cure rate. Again THANK YOU GOD!!! He will need to be on chemotherapy for about 2 and half years but should be in remission within one month!
Sept 24, 1999
Jordan will be having a "port - a - cath" implanted in his chest today. This is a direct access to an artery for getting his chemo and giving blood. It will keep him from being poked in the arm and hand all the time. They call it his "buddy" , because it takes all his sticks and hits. I know this is necessary but when they take him back for the surgery I loose it. That's my baby and he's crying for me. Oh God, please give me strength and He does! The surgeon comes out and everything went well, we are to go back to his room and wait for him there. They will start his chemo tonight.
Sept 25, 1999
My mother and I meet with Eileen, the nurse practioneer who works with our doctors. Eileen gives us a 2 hour crash course on what to expect over the next few months. We learn about his treatment plans (which consists of 3 phases: induction, consolidation, and maintenance), risks of infections, and different things to watch for. Thankfully she also gave us a 2-inch binder with all the information in it so that I can go back later and refresh my memory. The biggest concern we have right now is infection. The chemotherapy will destroy the cancer cells but at the same time good cells will die also, and Jordan's body will need time to replace the good ones.
Sept 28, 1999
Finally, we are going home today!!! Jordan is very excited. His lymph nodes have gone down and he seems to be feeling pretty good.
Sept 29, 1999
For the next 4 weeks, Jordan will be taking Prednisone and Zantac everyday. The Prednisone is a steroid that will cause him to have a extraordinary appetite. The doctors say he will probably gain 10 pounds during these 4 weeks. It also causes severe mood swings. But we don't care as long as he gets better.
Sept 30, 1999
Starting today, Jordan will be going to the clinic every Monday and Thursday for blood work and chemo injections.
Oct 14, 1999
We are 2 weeks into Induction. Today he is scheduled for a bone marrow aspiration to see how he is progressing. The doctors expect to see a tremendous decrease in the number of cancer cells and they do. Thank You God!
Oct 28, 1999
Well, we have made it through the first month. Jordan has gained 8 pounds, has chipmunk cheeks, and definitely has had some major mood swings. He is scheduled today for another bone marrow aspiration. The doctors are expecting him to be in remission. He is!!! (Remission means 99% reduction in leukemia cells, but not a cure. He will still remain on treatment for another 2 years and 5 months.) We are going to have a celebration party tonight for Jordan! This is a victory in our journey.
Consolidation Phase of Treatment:
October 29, 1999 - March 19, 2000
October 29, 1999 - March 19, 2000
During this phase of treatment, Jordan will go to the clinic once a week for blood work and chemo. Every 3 weeks he will be in the hospital for 3-4 days to receive intensive chemo. We are beginning to adjust to a new way of life. Everything centers around Jordan. Thankfully, big brother Jacob is doing great in handling all of this.
November 11, 1999
First hospital stay - Greg, one of Jordan's wonderful nurses at Wolfson's, explains to us the procedure for these hospital stays. Jordan will receive 6 hours of pre-hydration, then 24 hours of Methotrexate, then post-hydration until blood levels are drawn and okay. Greg explains that after the Methotrexate, the hydration is needed to flush the excess of Methotrexate out. (Put something in to help then you have to flush it out before it hurts. It seems as if everything is a game of time and it is my baby that is the victim.)
Midnight - Nov.13
Methotrexate levels are low - we get to go home!!!
Jordan is wiped out - he has no energy and a mouth full of sores. This lasts for about 5-7 days.
We are supposed to go in the hospital for stay #2; however, Jordan has pink eye. They send us home with medicine and schedule the hospital for next week.
Pink eye is gone - So to the hospital for Chemo #2. Same process as before - hydration, chemo, hydration, blood levels.
We're home! But Jordan is wiped out again with more mouth sores. It is hard for him to eat. He has lost the weight from the Prednisone. He is maintaining around 39-40 pounds.
Hospital time again. We will be in the hospital for the New Year. No biggie - the goal is to get Jordan better! Once we are settled in the room, Jordan gets some visitors - the Miami Hurricane football team. 5 of the players come in to visit with Jordan, Jacob, and Kerry (their cousin). Jordan gets a t-shirt, stuffed mascot, and they all get autographs and football cards. The volunteers around here are making New Year's special for the children with many treats and surprises. Also, the clowns from Ringling Bros are here and a clogging team.
From the Ronald McDonald waiting room at the hospital, we get a perfect view of the firework display without the noise or crowd. Jordan, Jacob, Kerry, Montana, and many of the other children are waiting to see the fireworks and they are spectacular. Happy New Year!!!
January 2, 2000
We are back home with no energy and mouth sores. However, we are half way through our chemo trips to the hospital.
Doctor appointment - Jordan is having a tremendous amount of leg pain. The doctor wants x-rays - nothing is found. They say it is most likely side effects from the chemo or possibly growing pains. The pain is very bad - Tylenol with Codeine is the only thing that will even begin to help.
Hospital Stay #4 - 2 more to go! Jordan still has lots of leg pain - The doctor has ordered more x-rays but still no sign of anything serious. - THANK YOU GOD!
Hospital stay #5!!! 1 more to go!!!
Jordan is still having a great deal of pain in his legs. Dr. Joyce wants to do a bone marrow aspiration just to make sure everything is still okay. The results are great - He is still in remission. Dr. Joyce tells us to get some Glutamic Acid pills and give Jordan 2 of them a day. This helps stop the crystallization forming in the joints from the chemo.
LAST CHEMO HOSPITAL STAY!!!! TIME TO CELEBRATE!!!
We have made it through the roughest part of this journey. God has truly given us many victories so far and we are so thankful to Him. We still have a long way to go but we know, that God will be with us every step of the way.
March 30, 2000 - April 2002
March 30, 2000
The 3rd and longest phase of treatment begins. This will last for the next 2 years. Most of Jordan's treatment will be oral medications until September 2000, then he will begin receiving weekly leg shots. We only have to go to clinic every 2 weeks now. On the off weeks we have blood work done in town, and the lab faxes the results to Nemours for us. Every 2 weeks Jordan takes 17.5 mg of Methotrexate every 6 hours for 4 doses. He is still taking 6-MP twice a day. Every Friday, Saturday, & Sunday he takes Bactrim to keep from getting infections.
May 19, 2000
American Cancer Society - Relay For Life - Putnam County: Jordan will be walking in the survivor's victory lap. This comes with many mixed emotions - we are very thankful he is a survivor and can walk this lap; however, it is very upsetting that he has cancer which gives him this lap to walk. But we still count our blessings!!!!
May 25, 2000
Jordan will be having a spinal injection of Methotrexate today. He has this done every 8 weeks to protect his central nervous system. He is doing great.
June 1, 2000
Jordan has to have an upper GI done today due to some stomach problems. He has been complaining of a lot of burning in his esophagus area. The GI shows a reflux problem. This is from the chemo, so the Dr puts him on 150 mg of Zantac a day.
June 12, 2000
Jordan weighs 42 1/2 pounds and is 37 inches tall. He is growing. The Glutamic Acid has helped the leg pains and his blood counts are wonderful. It seems that we can relax a little bit for now. However, all of you who have been praying, please keep on!!!
August 16, 2000
Jordan is doing great. He starts school today. This is very scary for me. I have been there for him every step of the way - now he will be in someone else's care for 6 hours each day. I know God will bless though.
August 25, 2000
Jordan is having a hard time adjusting to school. He says he is scared of getting sick and being away from his family. Please keep praying.
August 30, 2000
We are transferring Jordan to a different school. We have a very dear friend - Sandy Hurst - who teaches Kindergarten and she has agreed to have him in her class. He seems to be a bit more at ease but not totally.
September 14, 2000
We are still adjusting to school but things are getting better. All of your prayers are working.
September 21, 2000
Jordan has procedure today for spinal injection of Methotrexate. It has been exactly one year since diagnosis. I think back on this year and am totally amazed at how God has blessed and carried us every step of the way. Tonight we will be participating in "Light the Night" for the Leukemia Society. What a way to celebrate Jordan's life! Thank You God for such a celebration!!!
October 17, 2000
Jordan starts a new part of his treatment today. He begins his weekly leg shots of Methotrexate. He will have this until March of 2002. He doesn't really like the shots but it is not as much chemo as before. Praise God for His wondrous healing.
October 28, 2001
ONE YEAR TODAY SINCE REMISSION!!!! --- THANK YOU JESUS!!!
January 1, 2001
Well a new year is here and we are ready for a great one. Jordan is doing better in school. He started seeing a therapist in December to help him adjust to school. She has been great.
February 14, 2001
We are going to a special Valentine party today at MOSH in Jacksonville. Coach Coughlin and Tony Boselli from the Jacksonville Jaguars are going to be there to see the children from Nemours. Jordan is very excited about this. Check out the pictures on the photo page!
March 5, 2001
Jordan woke up on Saturday with his back hurting and a rash. He has been hurting all weekend. When I talk to Joanie at the clinic she says that it sounds like Shingles and I should bring him in immediately. After going up to Jacksonville, we find out it is shingles, but they want to try and treat it with oral medication.
March 6, 2001
The pain has gotten much worse so we are headed back to Jacksonville for a hospital stay. They will have to do IV medication for the shingles. We will be in isolation on the 6th floor at Wolfson's. Jordan is apprehensive - he says he is not suppose to have anymore hospital stays. Jordan is supposed to have procedure this week but all chemotherapy is put on hold until the shingles clear up.
March 7, 2001
We are in the hospital, and Jordan is doing well emotionally. It is tough being in isolation. After doing some chest x-rays, they have noticed a spot on his lungs. They are beginning breathing treatments and antibiotics. They doctors seem concerned.
March 8, 2001
Still nothing new about the lungs. Dr. Joyce is concerned about it being pneumonia. He is taking every precaution.
March 9, 2001
Jordan has been running fever. However, the chest x-rays do not show anything new. PTL! They are continuing the antibiotics, but are not as concerned as they were in the beginning.
March 10, 2001
Jordan's rash is looking better and his lungs are sounding better. We will probably get to go home tomorrow.
March 11, 2001
We are getting to go home. 6 days in isolation is enough. Jordan did great though. He is truly a strong little man!
March 15, 2001
Jordan is supposed to do procedure today; however, after waiting three hours in a secluded room (he still has a rash so we don't take any chances on exposing any other children to the shingles virus) we find out that his lungs are not clear enough for anesthesia. So we have to put procedure off for another week.
March 22, 2001
Thank God! --- Jordan's lungs are clear - he has procedure and we are back on track.
March 25, 2001
Jordan's legs are hurting and so is his back. The doctor said that he could have back pain for several months around the area of the shingles rash. He is very upset and for the first time he is wanting to know why he has cancer. He doesn't understand why he is sick and I don't know what to tell him. The only thing I can tell him is that we have to be thankful that he has a type of cancer that has medicine to treat it. Oh Lord, please be with us!
April 3, 2001
Things seem to be settling down again. We have 2 weeks until spring break and we are all ready for it.
May 27, 2001
Jordan is doing very well again - thank you Jesus. School is almost over (4 more days) and we have made it through kindergarten. Check out his school picture on the photo page. Thank you to Mrs. Sandy Hurst and all the staff at Mellon Elementary for making this year great for Jordan. He really needed you all and you were there for him!!!!
July 14-21, 2001
We are on vacation at the beach. Jordan amazes me at the beauty he sees in God's creation. He notices the smallest detail in seashells. I see this as one of the blessings that has come out of his cancer. He truly takes the time to enjoy the small things in life. If we could all learn that lesson we would be much better off.
August 1, 2001
Jordan is beginning to get nervous about school. We will be praying very hard for the next few weeks.
August 13, 2001
It is the first day of school. Physically Jordan is doing great; however, he has a fear of getting sick in school. Please keep praying.
August 20, 2001
It has been one week. Jordan is doing okay as long as Grandma Gwen is at the school volunteering. However, being in school for 6 hours really wipes him out. He has no energy at all when he comes home.
September 4, 2001
Jordan is feeling bad and running a low grade fever. He was so healthy during the summer. Of course he was not in a room of kids passing germs back and forth either. I am most likely going to pull him out of public school this year and have Grandma home school him. He will be off of treatment in April and he will have from then until August 2002 to get strong for 2nd grade. Please keep us in prayer as we begin a new road on this journey.
September 21, 2001
2 Years since diagnosis - -Many changes going on right now. Jordan is still at Mellon Elementary with Grandma Gwen volunteering there everyday. As long as she is there on the campus he seems to be ok. We think its just a security but right now -- whatever it takes. Health wise Jordan is doing great!!!
November 20, 2001
Jordan is now 7 years old!!! He is still doing great - his counts are staying stable and the doctors seem to think he is progressing very well. Happy Birthday Little Man!!!
January 1, 2002
It's a new year and we are looking forward to this year as Jordan will be done with all treatments in April. It is count down time!!!
March 10, 2002
Jordan's dad passed away today. He died in his sleep. Jordan & Jake were at his house this weekend, but thankfully they did not know what was going on until they were able to get home with me (Mom) and sit down and talk to them.
March 17, 2002
Overall, I thank the boys are dealing very well with all that is going on. Jordan keeps questioning why. The other day he said that it didn't matter about him having leukemia but he just doesn't understand why his dad had to die. Such deep thoughts for such a young boy. Please continue to keep them in prayer.
April 9, 2002
Jordan just received his last leg shot from the clinic. Next Thursday, 4/18/2002 Jordan will receive a Bone Marrow Aspiration and his final chemotherapy treatment. We are all so excited. It has been 2 1/2 years and we can see the light at the end of the tunnel. We are planning on a trip to Wild Adventures in Valdosta, GA to celebrate. Keep checking back and we will post celebration pictures!!!!
April 18, 2002
We are scheduled for Jordan's very last chemotherapy treatment today. He will receive a spinal injection of Methotrexate, a leg shot of Methotrexate and a bone marrow aspiration. The aspiration is to show whether or not there are any cancer cells in his body. We will find out the results tomorrow. Dr. Sandler lets us know that Jordan will need monthly blood work and check-ups for the next year but he expects Jordan to do very well. We discuss the process for having his port removed, which we will do after ROCK Camp in June. Everything goes well with the procedure so now I just have to get through until tomorrow when I get the test results!
April 19, 2002
JORDAN IS TOTALLY CANCER FREE!!!!!!!!!!!!!!!!!!!!!!!!!!! The results are great! He is so excited. We are off to Wild Adventures this weekend for a great time. There are 20 of us going -- Tonya, Jake, Jordan, Ron, Katie, Brittani, Grandma Gwen, Papa Dale, Russell, Michelle, Michael Allen, Amanda, Monica, Matt, Cindy, Greg, Brandon, Kerry, Michael, & Nicky!!!! It is CELEBRATION TIME!!!!
April 30, 2002
It is amazing at the difference we see in Jordan. He is so secure and confident. He is becoming more independent and not as clingy as he has been. Its like he can truly relax for the first time since September 21, 1999!!! We are looking forward to being on a new road in this Journey of his life!!!
April 21, 2003
Jordan had his 1 year check-up appointment today. Dr. Pitel said that we have reached a major milestone as the highest rate of occurrence is during the first year off treatment. We made it!!! Jordan is doing so great - he is playing baseball, making straight A's in school, very adjusted to life, and has a great personality. We now only have to go to the doctor every other month for blood work and a check up!!!
Just wanted to give everyone an update on Jordan.
August 24th, 2006 —- Jordan had a check-up with Connie today. That’s his long-term follow up nurse. He has been off all treatments for 4 and a half years so we only have to go to Nemours every 6 months. Jordan’s blood work is completely normal and he is now off of the headache medication (see the January entry below). I have to admit that I did talk to Connie today alone though. I was asking her if it was normal for me to ‘freak out’ every time Jordan got sick. He just got over a bad upper respiratory infection as well as an ear infection. Connie assured me that I was totally normal and unfortunately I will probably always freak to a certain degree. I thank God so much for His healing in Jordan’s life.