REMI IS DONE !!!!!!!!!!

November 23rd 2009 will be a permanently remembered date in our family now. Yesterday afternoon Remington completed his last treatment of radiation therapy! His cancer treatment is now complete. He will have annual scans and check ups for the next few years, but for all intents and purposes he has completed this adventure. It has been a long and difficult journey for Remington and the family this year. It actually feels a little strange not having to schedule and plan on getting Remi up to the hospital for treatment. The family is going to have to learn a new schedule again. I am OK with that!!
We had a special event last night for Remington, the Make A Wish Foundation had Remi's star raising ceremony at the Murray office. We invited friends and family down to participate and celebrate with us. It was extra special for us because he not only had his wish granted but completed treatment the same day!!
Thank you for everyone that has been there with help, hope and prayers. It made all the difference in the world for Remington as well as the family. You are all a part of our lives now.
May you all be as blessed as we have been. Happy Thanksgiving.

God Bless You All!!
With love,
Elijah, Shilo, Samara and Remington Jackson

Chemo is done!!!

The heading says it all! Remington completed his last chemo treatment on Friday afternoon! The nurses and doctors got together and celebrated with Remi. It was pretty cool. He had a banner hanging on the wall that said "Happy last chemo Remington". The charge nurse also brought in a big goody basket filled with toys and books. We have now completed one more step in this little adventure.
Now if Remi stays on schedule and does not get sick or delay his radiation treatments, he will complete his total cancer treatment on the 19th of November. That would be the ultimate Thanksgiving miracle for our family. It will be almost exactly one year since he was diagnosed with his sarcoma. Thank you for all of your prayers and thoughts during this time. It really has made a difference. Bless you all.

New activities

Hello to all-
For the past month we have been a bit of a holding pattern with Remington. He has had a round of chemo and has started radiation therapy up at the Huntsman Cancer institute. Remi will complete the first phase of radiation therapy this Thursday if he stays on schedule. This is the broad beam therapy that is covering the whole left side of his chest. The next step will be narrow beam radiation focused on the surgery and tumor sites. (This will last for 20 treatments.) During this time Remi will have to complete one last round of chemo therapy. If he stays of schedule, he will be completely done on the 2oth of November. It will be almost exactly one year from the time he was diagnosed with ewings sarcoma to the time his treatment is completed!
So far Remi has not had any major side effects from the radiation treatments. The most common side effects are fatigue and the skin at the treatment site turning red like a sunburn. So far we have seen little of either side effect. Thank you for all of your support during this time in our lives.

Good results so far

Hello everyone!
Remi just finished his 5 day course of chemo this week. He is doing very well. He has had very few side effects. The only issue he has had is some nausea. It was pretty mild, but did keep him from sleeping the other night. Remington is not losing his hair as of right now. It actually looks a little strange seeing him with hair after all of this time.
We are scheduled to meet with the radiologist on the 25th of this month. We will have a much better idea of how much longer Remington's treatment is going to be. Our hope is to have him back on a regular schedule and in school by the new year. We will have to see what happens....
Only 2 more rounds of chemo to go!!! It is nice to finally see a light at the end of this very long dark tunnel.

Latest news

Remington is doing excellent! He is scheduled to start chemotherapy again on Monday the 17th. The good news is he will not have to spend any nights in the hospital as long as he has no reactions or problems.. the rest of his treatments will be outpatient treatments from the infusion lab. We have a meeting scheduled with the Huntsman Cancer Institute to meet with Dr. Million. She will let us know what the proposed radiation treatment is going to be.
Remi is healing so well that most people do not even know he had surgery less than a month ago. It is to the point that Remi forgets and tries to climb or pick something up and his body reminds him that he is still healing from surgery.
Last weekend we participated in an event called Survivors at the Summit. It was a fundraiser for the Cancer Wellness House here in Salt Lake City. Kim and Jon Paulding as well as Shilo and I hiked from the tram at Snowbird up to the summit. It was a climb of 3000 vertical feet over a 3 mile hike. We started at 8000 feet and completed the hike at 11000 feet. Remi and his friends rode the tram up and met us at the summit. They had prayer flags set up all over the top, musical groups performing and had several cancer survivors speak. It was beautiful and cold! Remington did need to wear oxygen while he was at the summit, but that was the only issue he had. We then rode the tram back down to the plaza. It was quite fun. It was nice to meet other families and friends of cancer survivors.

A new development

Remington came home last night!! This little event surprised everyone. The Oncology surgeon walked into the room yesterday afternoon and started talking about sending Remi home. They are very pleased and surprised by Remington's recovery. (They say he makes it look easy.) We are a good solid week ahead of what the doctors were anticipating for Remington's recovery period before coming home.
Remi still has a feeding tube and an oxygen hose connected, everything else has been removed. The doctors will remove his feeding tube as soon as he starts eating regularly and he mainly needs the oxygen at night when he is sleeping. Remi is still pretty sore and is having to use a walker to get around a majority of the time but, he is doing all of this moving by himself. Now his only requirements are to eat, breathe,walk and heal. The doctors will be meeting to determine the next steps in Remington's treatment. He will have 4 to 6 weeks to heal, then he will be completing Chemotherapy (about 4 more rounds we think). After that it is possibly Radiation therapy up at the Huntsman Cancer Center. Dr. Barnette wil be meeting with the Radiologist soon to obtain his opinion. Hopefully it will be very quiet and calm for the next little while around here. We will post any news we get. Thank you everyone. Take care and God bless you all.

Finally out of ICU

Good news! Remington has been moved out of ICU and is back up on the 4th floor. The central line and his IV lines have been removed along with the tube running up his nose and into his stomach. His mood is much improved and he is actually laughing at a funny movie. The doctors want to take another x-ray in the morning but, they are very pleased with Remi's progress today. Remington is adjusting his position in the bed by himself as well as drinking water. the doctors are going to try Remi on a clear liquid diet starting tomorrow. If he can eat and keep it down they will remove the feeding tube from his nose. The next goal will be to get Remington up on his feet and moving around. Thank you for all of your support through this time in Remington's life.

On Our Way to Recovery

Remington 's breathing tube was successfully removed today. He also had the two large chest tubes removed. He has been able to cough and clear his lungs and throat by himself. His chest X ray is showing that his lungs are clear. The doctors are impressed because he made everything look so easy. We suspect he will be moved to the fourth floor by tomorrow. Remington even smiled today. He is truly our hero and has made us very proud. We want to thank everyone for their positive thoughts and prayers.

Still in ICU

Right now Remington is doing very well. Not a lot has changed since our last post. Remi is no longer getting a continuous drip of pain medication. He has to push the button for his PCA pump to get his pain medication. The are trying to keep him as awake as possible so he can trigger the breathing instead of letting the machine do all of the work. It is a real balancing act. Keep the pain under control without putting him so deep that he forgets to breathe. The plan is changing on a daily basis, but right now they are planning on taking the tube out sometime tomorrow. This depends on how well he does this evening and the results of his chest swab. They took a sample of fluid from his lungs to check for infection this morning. Remi is resting as comfortably as he could be all things considered. We will post again when we have more news. Thank you.

The tumor is out

Remington is done with surgery. It took 8 hours , but he is finally done. They took 4 ribs as well as a part of his left lung where the tumor had grown into the lung lining. Remi now has a spot that is 8cm by 12cm that is missing the ribs and muscle. The mass they removed was roughly the size of a deck of cards. Right now he is still sedated and has tubes running out of him all over the place. (He has 2 IV lines, 2 drain tubes running from his chest cavity, 2 drain tubes running from his incision site, a breathing tube, as well as 2 tubes running up his nose and down into his stomach.) He actually looks a little like a Borg from Star Trek.
The doctors are going to keep him asleep tonight and slowly turn down the machine that is breathing for him. That way his body will take over breathing and they can remove the tube tomorrow sometime. He will then spend another day in ICU. After that it is back to the 4th floor as long as there are no complications and Remington cooperates with the therapists. We will post any news in the next day or so. Thank you.

surgery update

The circulating nurse just spoke to us about Remi's status. He has been under for a little over 2 hours now, the surgeons have removed the mass and his 4th rib. Now they will start cleaning up the edges and checking to other suspicious areas from the CT and bone scans. Remi has received 1 unit of blood so far and his vitals are strong. We will update again in a few hours when we hear Remington's status.

Here we go!!

Sorry for the delay in posting any news. We have been going non-stop for the past few weeks. It has been one activity after another, trying to squeeze a summer of activities into 3 weeks. We have been out boating on Pine View, Remington rode in the pace car out at Rocky Mountain Raceway, we have been doing marathon movie nights as well as just getting back from 3 days in Disneyland. Remington and Samara are having a blast.
Now comes the hard part..... We are sitting in the surgery waiting room now. Remington just went back and they have just put him to sleep. It will be at least 6 hours from now before Remi will be coming out. After this surgery the schedule is 4 days in ICU, followed by 14 days up on the ICS floor. The surgeon is planning on removing at least 3 ribs and possibly up to 5 depending on what they find. He will then have a long road of therapy and recovery. Once he has recovered it will be back to 4 more rounds of chemotherapy as well as 2 weeks of radiation therapy. This will be a hard climb, but at least the finish line is finally in sight.
I will post pictures of our adventures later this week after things have calmed down a little bit. Thank you once again for your thoughts and prayers. Please keep them coming. Remington is going to need them.
Elijah

A surgery date, finally......

We have finally heard from the surgeons about what they are planning for Remington's surgery. He is scheduled for his tumor removal on the 16th of July. He is going to be the only one scheduled for that day. Remi's surgery is turning out to be much more involved than we were anticipating. Right now the doctors are planning on removing the 4th rib (the rib that has the tumor), as well as the rib above and below that rib. So... 3rd,4th and 5th ribs will be removed. They really want to be sure of getting all of the cancer. The pediatric surgeon has also notice some other spots on Remington's 8th and 9th ribs as well as down on his diaphram that he considers suspicious. He is not planning on removing these other ribs, but he won't be sure until he can get in there and see the spots. If they find anything on his ribs he will mark those areas and Remi will get a stronger dose of radiation at those spots. The diaphram will be checked out as well, if they see anything there thay will remove the suspect area and graft replacement skin in place. The surgery is scheduled to be 8 hours long. The doctors are figuring 3-4 days in ICU after surgery and then 10-14 days back up on the 4th floor in ICS. After he is released from the hospital he will have a 4-6 week recovery period before they will start the fun and games all over again. The plan is 4 more chemo treatments as well as 2 weeks of radiation therapy. (treatment everyday for 45 min). Keep in mind this is just a rough plan and not set in stone. We are counting on changes in the plan on a regular basis. Once again, thank you for all of your prayers and thoughts during this time in Remington's life. We appreciate it more than you can ever know. Take care and God bless.

Another Adventure

Remi is doing pretty well, all things considered. Right now his platelet counts are a little low, so we will not be starting chemo therapy today like we wanted to. We will have to see what his labs look like later this week. This round will be the 48 hour treatment. This is the heavy duty constant drip for 2 solid days.
Remington has had a new experience recently. He has now had his first ( and only hopefully) dog bite. He was bitten on his right leg right about calf height. He bled a little bit, but the bruise makes the bite look worse than it is. It is already healing and he has had no adverse reactions at all. He and we were pretty lucky this time. It is just one more bruise on his legs to go along with all of the other bruises from playing and running around. His energy level is not low at all. We will let everyone know when he will be going back in for treatment.

News from the doctors

After weeks of waiting, we have finally heard from the tumor board about what the next step is in Remington's treatment...... it's wait. The doctor's want us to have Remi go thru two more treatments and then they will take another picture of his tumor to check the size. They have determined that the tumor has shrunk by 80% so far. Remi is a victim of his own success. Because it has been reduced so much they want to see how much more they can shrink the tumor before he goes into surgery. If he stays on schedule, that means the first part of July will be his surgery date. At this time they are going to remove his third rib for sure, the ribs next to it will have to wait and see what they find when they get inside.
Remington's counts are up, that means today is the start of the next round of chemo therapy. This will be the 5 day course of treatment. If there is no side effects, Remi will go home tomorrow afternoon some time. He will then come in to the clinic for daily treatments for the rest of the week. We will try to be more proactive in keeping the blog up to date. Take care.

CT and Bone Scan

Remington's blood counts came up quickly and hence he was in the hospital during his 10th birthday. He has now completed his sixth chemotherapy treatment. He is definitely a Jackson and becomes a bit ornery when he does not eat and his blood sugars are low.

On April 8, 2009, Remington had a CT scan and a Bone Scan to measure the progression of the tumor. The CT scan demonstrated that Remington's tumor now measures 4 inches by 2 inches. The Bone Scan revealed there was decrease in the intensity in the 4th, 8th, and 9th lateral left ribs. ( less likely they are going to have to take his ribs). Now, we wait for the physicians to discuss when Remington will undergo surgery. The physicians will discuss Remington's case in the next couple of weeks.

Remington's spirits are high and he has a great attitude. Thanks for all the support.

Tumor Reduction & The Plan

Remington had a X ray of his chest performed with this round of chemotherapy. The tumor has shrunk another 50%. The tumor now covers 5 ribs instead of 8 ribs. Hey! The doctors have told us after the next round of chemotherapy he will have a CT scan. The doctors will be able to use the CT scan to measure the size of the tumor. Remington case then will be discussed will the members of the Tumor Board and a surgery date should be given. The doctors have lowered the medication dosage with his last chemotherapy round in hopes that we can start his next chemotherapy on March 30th the day before his 10th birthday.
We want to thank all of Reid School for the celebrating Remington birthday and Olive Garden for donating the food. Reid school raised $705.00 to pay for his treatments. Remington loved seeing all of the students wearing their clothing on backwards to help celebrate his birthday. We can't thank you all enough for the support it gives us. We have the courage, the confidence and a can do attitude to see this all the way.
We love you lots,
The Jackson Family

Waiting for the next round

Labs were drawn earlier this week and Remington's platelets are still down around 31. To start the next round of chemo therapy he needs to be at 75. His home health nurse will be coming by tomorrow morning to draw another set of labs. If his numbers are up high enough, Remi will start on Monday morning. That is the hope right now. If he is delayed too much longer, Remington will not be able to go to his own birthday party. We are planning on having it at Bouncing off the walls. Unfortunately, he will be at the bottom of his cycle on his birthday if he goes past next Wednesday before he starts. He could go, but he would have to wear a mask and could not play on the slides with his friends. That would really suck! well, let's keep our fingers crossed.........

Remi's first trip

We have made some progress with getting Remington and the family back on something closer to a "normal" life. We took a road trip down to Sedona Arizona to see Remington and Samara's Great-Grandmother for her 93rd birthday. Remi had labs drawn Thursday morning and we hit the road soon after that. We received a call from Primary Children's that afternoon when we were in sothern Utah right around Panguich. his platelets were very low and they wanted us to come in and get a transfusion. Obviously we could not go to Primary, so they scheduled the transfusion with the hospital in St. George. The family then diverted across the bottom of Utah over to St. George and found the hospital. They were waiting for us and completed his transfusion in about an hour and a half! Thank you James! We then continued our trip to Sedona, spending the night in Paige Arizona. The kids had a wonderful time in Sedona seeing their Great-Grandmother. She loved seeing us as well. The trip back to Salt Lake City was pretty uneventful and long. On the way we say the Grand Canyon as well as some old indian dwellings. Remington and Sam really liked that. Now it is back to the treatment routine and lab work. Remi is not too thrilled about that, but what can you do?

Good treatment this week

Remington has completed his 5 day course of chemo therapy. He had no reactions or problems! This has been one of the best treatments so far... His only complaint is that he is getting tired pretty quickly. This will take some time for him to get used to, he has always been a high energy kid. The home health nurse will be by this week to start taking blood samples for the lab. We will then know how he is doing with his counts. My personal opinion based on the way he is acting is that he will be going into the infusion lab for whole blood to replace his red blood cells soon. That is why he gets tired so quickly. We will have to see. Our hope is that he will be feeling good enough for a trip down to Sedona Arizona to visit his great Grandmother. Her birthday is this weekend and she will be 94 years old. Remington also wants to go see the Grand Canyon if we can. Since we will be driving past it on our way to Sedona, we will probably make a quick detour and go see the South rim. Remington is pretty excited about that. I will update the blog again as soon as something changes. ( hopefully for the better)

Treatment status so far

Remington was able to come home Tuesday afternoon from the hospital. He had no major problems while under observation up in ICS on the 4th floor. He was very happy and so were we!
Yesterday he went to the infusion lab for his treatment. It took almost 3 hours but, once again there were no problems. he will be going back to the lab today and Friday for his last two treatments for this course. The doctor says he wants to give Remi 1 or 2 more treatments before he starts taking chest x-rays to measure the tumor. Either way, progress is being made! So far the only symptom Remington is experiencing is his energy level is very low and he gets tired very quickly. I can live with that! There will be another posting when something happens or next week some time. Thank you for everything.

Round #5

Today is the 16th and Remington has been admitted to the hospital for observation. They have changed the dose of Cytoxin that he is getting. (He is now getting a full strength dose.) The doctors want to keep him under observation for the next 24 hours to make sure Remington does not have any bad reactions to the new medication levels. So far he has had a great day. (At least as much as he can considering the fact that he is stuck in the hospital until tomorrow afternoon at least.) We are hoping that it stays that way. I will update the blog tomorrow afternoon to let everyone know how things pan out. Thank you for the support you have all shown us during this little adventure.

p.s.
remington wanted to give you a quick run down on the side effects that he has been experiencing.
1. he is dizzy
2. his eyes are dialated ( bright light hurts him)
3. his stomach is a little queasy
4. and he has a pretty good headache.
(not too bad considering they are pumping toxic chemicals into his body)

Remington's status

Hello everyone, Remington is recovering very well from his last round of chemo. His white blood counts are above 3000 and his ANC is above the minimums as well. The only thing holding him back from starting is his platelet count. Remington has to be above 75 before they will start. (he is at 28 right now) Remi will have labs drawn on Sunday morning to find out how far he has improved. This next round will be the 5 day course. He would normally get this in the outpatient labs and not have to be admitted but, they are going to increase the strength of the chemotherapy dose this time and are going to want to watch him closely for the first couple of days. After this round the doctors will be taking an x-ray of his chest to see just how much the tumor has shrunk and if it is time to remove it. I am sure they are going to want to shrink it as much as possible before surgery. Remington is getting used to his Port-a-cath now and doesn't get nearly so upset when we have to access or de-access it now. It is so much easier than flushing his central line twice a day and having to keep it clean and dry all the time. Two days ago Remington lost two of his molars on the left side in the same day. He has brand new teeth showing thru his gums already. He is growing up fast, even with the toxins being used to kill the tumor. We will post pictures soon.

Latest news

Remington has had a pretty good week all things considered. He went in to the hospital on Tuesday for a blood transfusion because his levels were so low. While we were there, Remi started to get a low grade fever. He had to spend the night in the hospital getting IV antibiotics and fluids. The hospital let him come home on Wednesday. He was able to go to the Reid School and see his little sister perform in the school talent show. Samara was very excited that her big brother could come watch her dance. She was so cute at the show! Remi's counts are still low but, he is doing very well right now. He has a few sores in his mouth and is pretty tired during the day. He is keeping his chin up though. His feeding tube has been removed so it is very important that he eats every day. That is his battle right now, eat even if it doesn't feel good or taste good. The doctor will put the feeding tube back in if he doesn't keep his weight up. He knows it is sink or swim now. We'll update every one when the next event occurs. God bless you all.

Remi's next treatment

Remington now has his port-a-cath and is getting his medicine through that. He no longer has the central line in his right bicep. The home health nurse came by this morning and took a blood sample for his labs. He is now at his lowest point. His white blood cell count is now zero. He will be going into the hospital in the morning for a blood transfusion to help get his counts back up quicker. He was pretty nervous about getting his port-a-cath accessed this morning but, they put some numbing cream on the access site and he didn't feel a thing when the needle went in. He was still pretty upset when he saw the access needle though. He has not had any mouth sores or major nausea yet. We are hoping it will stay that way! Remington will now have about 2 weeks to recover before he is scheduled to start the next round of chemo. Remington says to tell all of you thank you for your thoughts and prayers over the past few months. He also says thanks to all his friends at Reid school for the cool artwork and notes. He is hoping to be able to come to the talent show on Thursday and see everyone perform.

The next round

Remington has made it into the hospital today. He now has a porta-cath on his chest under the skin. He was not very happy when he woke up from surgery. The doctor is waiting on Remington's blood chemistry to make sure everything is ok before they start the next round of chemo therapy. If everything is safe he will start this afternoon with his first dose. This round will last for 48 hours. Remington says to tell everyone hello and thank you.

Not quite ready

We have just received the results from Remington's last labs. His platelets are still too low to start the next round of chemo. That means on Monday he will have some more blood drawn and sent to the lab for testing. If his numbers are good he will start on Tuesday morning. If not, we still wait. I finally have a copy of Remi's chest x-rays from the last of November as well as the 4th of January. The difference between then and now is quite amazing! Check it out for yourself. We just hope it keeps up this rate of shrinking.

A very good week

Hello everyone, we hope you had an excellent weekend. As the title states, Remington has had an excellent week. Last Friday he was able to visit his school at lunch and see all of his friends and teachers. He had a blast while there. The only down side was that he was pretty tired after his visit. Remington was scheduled to start his next round of chemo-therapy today but........ his blood work came back and he is not ready for the next round. His white blood counts are fine, it is his platelet counts that are low.(these are the cells that cause the blood to clot and stop you from bleeding when you get a cut) They are going to take some more blood on Wednesday and we'll see where his levels are then. If they are high enough, he will start later this week. We will keep you posted on any changes. Thank you for every positive thought and prayer for Remington.It has made all of the difference in the world. We also appreciate everyone's assistance with Remington's medical fund at Mtn. America Credit Union. It is very generous and kind of you to help out during this time.

Sincerely,
The Jackson's

Back in the Hospital

Last night Remington decided he had been home long enough. He spiked a fever of 101.9, threw up and has been having stomach cramps. We made the trip back up to Primary Children's Hospital about 1:30 this morning. He is now back up on the 4th floor in room 4419. His ANC is 0 and his white blood cell count is 100. When they are this low, the hospital assumes the worst and gave him two different broad spectrum antibiotics as well as a liter of saline. Because his counts are so low, he will have no other reaction to infection other than fever. It is the only defense his body has right now. Remi is doing well this morning, his fever broke last night but he is still having the abdominal cramps. The blood cultures will take at least 24 hours to be completed, so Remi and I will be spending the night here at the hospital. Hopefully the tests will come back negative and he can come home sometime Monday. We will update when we know what is happening.