An excellent Christmas

We hope you all had a great Christmas! We did... Remington had an excellent time home at Christmas. We had to take him back to the hospital on the 26th to start his next round of chemo. He had no bad reactions to this course. Unfortunately, I have picked up a cold somewhere so I have not been able to be at the hospital. I was shocked when I was told by Shilo today that Remington was coming home! Remi will now be going into the outpatient office to receive treatment for a few hours and then he can come home each afternoon. (I guess this is the way it is supposed to happen.) We just haven't had very good luck with Remington's reactions to the drugs and Chemo treatments. He came home about 4 o'clock this afternoon. We ordered in Chinese food and Remi had more to eat this evening than I have seen him eat in the past month! He just needs to be careful and not over extend himself running around. It is great to see him up and about again! We will update the blog again in a few days (or when something else happens).

Big improvements

Over the past two days we have seen an amazing improvement in Remington's condition. He is back up on the 4th floor and doing well. They are planning on removing the chest tube today and have switched almost all of his medications over from IV to oral. They are actually considering letting us take him home for Christmas eve and Christmas day! That is what Samara asked Santa to give her this year. She only wants her brother to come home. Looks like she is going to get her wish! Remi has not had any more seizures or complications. The only thing he is struggling with right now is his stomach, it does not like the feeding tube and liquid diet they are giving him. We will gladly take a sick tummy over any other issue he has had though. Thank you for all of your prayers and thoughts during this time. May you all have a Merry Christmas! Bless you all!!!

The Bad Weekend

As the title suggests, we have not had a very good weekend. Remington started the next round of Chemo therapy about 6 P.M. on Friday night. By 8 P.M. he had a reaction to one of the medications. This medication caused neuro-toxicity in his brain, which then caused Remington to have seizures. It took about 2 1/2 hours for the doctors to stop the seizure. He is back in ICU now. They have stopped the Chemo therapy, but we have to wait for his body to flush the chemicals out of his system. The doctors are going to meet this morning and come up with a new treatment plan for Remington. They are going to have to try a different family of drug for this second treatment phase as this set of drugs obviously is not going to cut it. We will let you know when Remington is moved back up to the 4th floor. Thank you

A mellow day

Yesterday was a pretty good day for Remi. We had no emergencies and no complications. He slept pretty well and only got slightly sick to his stomach once. This is was about his best day yet in the hospital. He is no longer wearing oxygen and his energy is starting to come back up. We are just waiting for the pharmacy and doctor to get the medications up to his room to start his next round of treatment. I am thinking it will be sometime late morning or early afternoon. This will be the 5 day treatment. We have heard that this round tends to have less side effects (or at least not so extreme). Cross your fingers and hope. That is what we are doing. Thank you again for your thoughts and prayers. They are all deeply appreciated..

P.S.
Remington says hi to all of his friends at the Reid school and to friends and family that are reading this blog

A surprise for Remi

Hello everyone. I have just returned to Salt Lake City from Idaho. While I was working in Boise at a company called Motive Power I found out that Mike Rowe from the Discovery Channel show Dirty Jobs was filming there. I was able to talk to him and he autographed a hat for Remington. Dirty jobs is one of our favorite shows. It was the first time I have seen him smile since coming to the hospital. It was great to see! The latest schedule we have is that Remi will start the next chemo treatment sometime this weekend. Unfortunately that means he will be in the hospital over Christmas. We will just have to adjust our plans a little bit and celebrate here as well as at home. We will post the next update when things start happening again. (Hopefully it will be scheduled events and not another crisis.)

A Step in the Right Direction

We have moved out of ICU. We are now up on ICS (immuno-compromised floor). Remington is sleepy today. He smiled when his friends visited him. We are trying to build up his strength for the next chemotherapy session. It will be a five day course and we have not heard when it will start. It looks as if we will be here for Christmas.Thanks for all your support.

Free from the machine

Good news today! Remington has had the breathing tube and Foley catheter removed! He is breathing on his own and starting to get over the sedation he has been on for the past week. He is still a little groggy and his throat hurts, but he is doing very well. His mouth is healing very nicely and his hair is gone. They are planning on moving him back up to the 4th floor tomorrow morning. That means he can have visitors again! He is very excited about seeing his friends after everything he has been through. The doctors are looking at starting the next round of chemo therapy on Wednesday sometime. The good news is that they are treating him for the mouth sores and mucusitis before it starts. That should keep the pain and discomfort at a minimum. We shall see. Thank you everyone.

Latest news on Remington

Today the radiologist measured the tumor on the CT scan and determined that it has shrunk 10mm so far. Even he was surprised at the amount of change. Now we have a new wrinkle to deal with. The tumor is dying so fast that Remington's body can't absorb the fluids from the breakdown. This morning they put a small chest tube called a "pig tail" in between his ribs to drain that fluid out. They have drained over 300 cc's out so far. All of that fluid was sitting in his chest keeping his lung from inflating. The doctor is already hearing air moving in his left lung. It is not much so far but, it is still more than he had yesterday. They are planning to remove the breathing tube tomorrow. We were hoping for today, but his tongue is still too swollen from his chemo. They would rather wait another day to give his body a little more time to heal before removing the tube. His ANC count is now above 1000 so his risk of infection is going down every day. The schedule is looking like the next round of chemo therapy wil start the middle of next week. This course will be a 5 day treatment. (His first was a 2 day treatment.) We are hoping he will be done with this round of chemo and be able to come home for Christmas. We will have to wait and see how he tolerates this next week. Keep your fingers crossed.

Finally some good news

Remington has finally started to improve! The swelling and sores in his mouth are starting to get better. They are considering taking out the breathing tube within the next 24 hours. After they take the tube out he will have to stay in ICU for 24 more hours so they can make sure he will be ok before they send him back up to the 4th floor. We also got the best news of all! Remington's tumor is already starting to shrink!!! The doctor was more surprised than we were when he looked at the CT scans of Remi's chest. They were not expecting to see any real response to the chemo therapy for at least two more cycles. ( 4 more weeks). Shilo and I have an appointment with Dr. Barnette this evening to have the CT scan explained in more detail and to discuss the next steps for Remi's treatment. Thank you to every one who has supported us during this time. Words are never enough to express just how thankful we are to you all. Bless you

A setback

Remington has been moved back to the ICU and has the breathing tube in place again. He is suffering from a common side effect called mucusitis. This is where the chemo therapy causes the mucus membrane in the sinus, throat, and stomach to peel off. This caused a lot of bleeding. He inhaled some of this blood and had to be moved back down to ICU so the machine can breathe for him while his body deals with the inhaled blood. He also has very painful sores all over his mouth and lips. This is also a common side effect. We are hoping the next round of treatment will not be so bad for him. He is one tough guy. He is already asking when he can be moved back up to the 4th floor so his friends can come see him. (Well, he's not asking but he is writing the questions on a pad of paper since he can't talk.) He is now losing his hair as well. Grandma will be coming up this evening to cut his hair off. He is not going to be happy about that little adventure.

Chemo aftermath

Remington has experienced the wrath of the chemo and antibiotics (nausea, vomiting, diarrhea, thrush, rash) He sure is a great storm trooper. He loves massages, showers, games, the word puzzles and movies. His white blood count (WBC) is too low for a second round of chemo. His mouth is too sore to eat. He has been receiving his nutrition through his IV.
Remington states he misses his friends and school. He states he is still feels like he is in medical school. Today, he wrote his Christmas list. He appreciates all the nice things people have given him.

Background on this battle

This blog was created to keep friends and family up to date on our son's battle with Ewing's Sarcoma. First a little history....
Remington is 9 years old. He has a 5 year old sister and two loving parents, not to mention lots of extended family and friends! On November 21st he was complaining of a burning pain in his armpit and chest area. After seeing a large bulge under his arm pit he was taken to his pediatrician. Dr. Witt sent us up to Primary Children's Hospital for a chest X-ray and CT scan. There was a large mass discovered inside his chest cavity that was the size of a grapefruit. This mass had collapsed his left lung. He was admitted to the hospital that weekend.
Since being admitted he has had several battles. His first was surgery to biopsy the mass under his armpit and get bone marrow samples from his pelvis. They also placed an IV line in a major vein that runs down to his heart so they can give him medicine and treatments. The following day the mass was confirmed to be malignant. He was also given a full body bone scan to make sure the cancer had not spread to any other parts of his body. It has not!!! He started his Chemo treatments on Saturday the 29th. That evening he started suffering from Pulmonary Edema (fluid around his heart and lungs). He was transfered down to the Intensive Care Unit and had a breathing tube placed down his throat and into his lungs. The machines were breathing for him for 4 days. He is now back up on the 4th floor in the ICS wing ( immuno-compromised section). The Chemo causes the white blood cells to drop and he can get sick very easily. All of the children on this floor are in the same situation. We are hoping to get him home soon. We are thankful for the love and support of our friends and family who are helping us in so many ways. This blog will be updated on an "as things change" basis. Thank you and God Bless.