Long Time No Posts....

Sorry I haven't posted in such a long time, things have slowed down for X medically speaking, which is great! We have been super busy getting back to "normal". Xavier is doing well in school and enjoying 6th grade to the fullest! He has also been busy with baseball. We have practice 2 times a week and games every Sunday. People that don't know us have no clue that X has cancer. He is a great baseball player and has been having a wonderful time out on the field. Speaking of baseball...Xavier had the chance to go to game 1 of the Angels playoffs vs. the Red Sox with a friend from school and had a blast!
We are going to clinic for spinal chemo every 28 days, and he is still taking oral meds every night. The Dr's are pleased with how well he is doing, and so are we. =)
Xavier's next appointment is on the 20th for a spinal tap and IV chemo.

Thank you all for your prayers and continued support.

Love, Cherie

Back to School

Hi,
X is doing really well. Adjusting to the long days of 6th grade with ease. :) I dont think he is too fond of the homework, but what kid is? I love all of normal stuff we are doing now! He is also back in baseball as I said in the last post. He has a scrimage on Monday and will be pitching! Speaking of baseball, we got a call from one of the Child Life specialists at the clinic on Friday...she said she wanted to invite X and the entire family to an event at Dodger Stadium on Wednesday. The wives and girlfriends of the players set up these events for different charities, and this time the charity is Pediatric Cancer. We get to go to the stadium, run the bases, check out the dugout, and meet some players! They are also feeding us dinner and then we get to watch the game. We are looking forward to it! Will try and post pics of it afterward. We also got to take part in a Make-A-Wish event at Wild Rivers last week. Our entire family got to enjoy the waterpark and a BBQ lunch at no cost. It was especially nice becaue we got to spend time with our friend Benjamin and his family. He and X were in the hospital together when they were diagnosed, X with leukemia, Benjamin with osteosarcoma. They are both doing so well and it was nice to see them out acting like kids again! X has an appointment for spinal chemo at the end of the month. Hope everyone is enjoying their summer.

Cherie

Busy Month...

Hi Everyone!

As they say, "No news is good news". X has been feeling great! We have been super busy this month, I think he is trying to make up for a year of being stuck in the house. He has been swimming at friends houses, going to the movies, went to Disneyland, and went to visit Grandma Connie in Vegas... He also had his first baseball practice last week. He did really well, he just needs to build up his endurance again. It was wonderful to see him out there!

X had his bloodwork done last Tuesday, but now CHOC doesnt give me the counts unless there is a problem. I wish they didnt change their system, I liked knowing where he was at...
He has spinal chemo next week on the 28th. Will let you know how it goes.

Cherie

Wish has been granted...

Hello everyone! X has been doing great! We went to clinic on Tuesday, he had IV chemo. This was the first time we have had chemo without the broviac catheder. They had to run an IV in his hand because the medication is so strong and can cause a burn so they cant do it in the elbow joint. He didnt love getting the IV but it is much better than having the broviac all the time. They ran his labs at our appointment, his ANC is 1859 which is very good. The Dr is very pleased with his progress and said that he looks great! He has really been enjoying his freedom...he has been swimming like a fish! I think he is trying to make up for lost time!

Also, we heard from the Make-A-Wish foundation this week...they have granted his #1 wish. We are going to WRESTLEMANIA!! He is super excited! They have lots of fun stuff planned, and will fill us in more when the trip gets closer. (late March 2010)

Have a safe and happy 4th of July!!

Doing Great!

Hello everyone,

Xavier's surgery went really well! He was nervous of course, but the procedure itself only took about 20 mins. The longest part of the whole thing was the waiting around until the surgeon and anesthesiologist came up to go over everything. But after they wheeled him away they time flew by! When we went to see him in recovery it took him a few minutes to realize that everything was done, but within about 5 minutes he was eating a popsicle and said he felt great and was ready to go home! The surgeon said X could shower on Sunday (which he did, for the first time without having to be covered with plastic and tape) and he will be able to swim in a week. What an eventful birthday! When we got home he never even took a nap, he wanted birthday presents! =) We had a low key birthday celebration, Grandma Connie and Grandpa Ken came by for Woodranch for dinner and a Baskin Robbins ice cream cake. We also let X have his friend Dakota come over...I am such a pushover!
Tomorrow X has to have labs drawn to check his blood levels, they will have to do a regular draw since we dont have the catheder anymore but we are fine with that! His next clinic appointment is on June 30th for IV chemo, no spinal, yay! Will let you know how it all goes.

Love, Cherie

Doing Well

X had his appt for spinal chemo on the 2nd. Everything went well, his counts are at 2064 so his Dr increased the dosing on one of his meds. We got the results on his blood test that was checking to see how his body is metabloizing the chemo. His body is handling the mercaptopurine fine, but he is deficient in the ability to metabolize the methotrexate. In light of these results he will probably be on lowered doses of methotrexate for the duration of his treatment. The Dr assured me that this will not effect his recovery.
We got lots of good news at this appt, since Xavier's counts are stabilizing he will be able to sign up for baseball again!! I cant wait to see him out on the field!! He will also be able to join in on a few school functions at the end of this school year, like the state fair, field day, end of the year party, etc...
We are all getting anxious for Friday the 12th as well. X has his surgery to remove his chest catheder/broviac. What a crazy birthday gift for him! We have to be there @ 7:30am, surgery is scheduled for 9:30am, and we should be home in the afternoon sometime. Please keep X in prayer that everything goes smoothly and he is relaxed. Will update after the procedure and let you know how he is doing.

Love, Cherie

Surgery Scheduled!!

It has been an interesting few weeks around here. We had the consultation with the surgeon on the 13th which was not worth the $40 co-pay...all she did was ask what we needed to have done and then said she would call us in 1-2 weeks when she can put him on the schedule. So finally yesterday we heard from the scheduling dept who told us that we have a date set for ...June 12th... Xavier's 11th birthday. Another B-Day spent in the hospital is not what X was planning on but we want to get it done ASAP and if we didnt take this date we would have to wait longer. Luckily it is an outpatient procedure to have his catheder out, so he goes in @ 9:30am, and we should be home by late afternoon. The procedure itself only takes about 20 mins, the long part is the anesthesia. Once it is removed he will be able to shower within a day or 2, and can go swimming a few days after that! I cant wait to see him swimming again, he has really missed it!
We also had his bloodwork done on Tuesday. His counts are 1590, which is still really good. They are down a bit from the last time but that is to be expected since he had a spinal chemo 2 weeks ago. Our next appt is on June 2nd for a spinal and IV chemo. Will update again after that appointment.

Cherie

Making Progress

X had his appt on Tuesday for spinal chemo and IV chemo. Everything went really well, he did it without sedation again. What a tough cookie! He did feel pretty bad the rest of the day though, sore back, nausea, etc... The Dr decided to do a blood test to see how Xavier's body is metabolizing the chemo so far, because as of right now he is still on lowered doses. We will have results in a week or two. The Dr said that some kids just dont handle high doses, so that might be why his counts took a long time to recover. His labwork from Tuesday have his counts at 1795 which is GREAT! We also finally got the authorization from our insurance to have his catheder removed! He has a consultation appointment with the surgeon on the 13th to go over the procedure and explain everything. After that we should have the procedure scheduled in a week or 2. He cant wait! Will update again after the appt on the 13th.

Cherie

Make A Wish

This week we recieved paperwork from the Make A Wish Foundation. Xavier is SO excited! We will be having a meeting with 2 of their Wish Coordinators within the next few weeks to help Xavier decide what it is that he really, really wants. His wheels are turning like crazy! I think he has narrowed it down to a few ideas: a trip to New York, the Bahamas, MLB All Star game, or Wrestlemania...but we will see what he comes up with once he meets with Make A Wish. I will keep you all updated on this exciting new development.
X has an appointment on the 5th for spinal chemo and IV chemo. We should have more info on when his catheder can come out too. Will let you know when I have more info.

Cherie

Good News!

I guess the lower chemo dosing is finally working, X had his labs done yesterday and his counts are at 1457! He has been feeling good lately, but over the weekend he was on the verge of a fever, luckily it didnt get too high so we narrowly escaped a trip to the hospital. His energy is coming back and he has been keeping busy with his home-schooling, he is really enjoying his science lessons right now. Yesterday I also spoke with the authorizations dept at CHOC to get an idea on when X can get his chest catheder removed, and we should have approval in about a week. Once we get that, we can schedule the surgery. We cant wait! It will be so nice for X to be able to shower normally and swim again! We go back to clinic in 2 weeks for spinal chemo, will update you again soon. Thanks for all of the prayers and support.

Cherie

Getting There

X went to clinic on Tuesday for IV chemo and bloodwork. His counts are at 949. They are coming up, just slowly...his Dr put him back on his oral chemo but just lowered all of the doses. He will do bloodwork again in 2 weeks, and will go back to clinic in 4 weeks for spinal chemo. He is feeling good, and had his cousin Trevor who lives in Las Vegas come down and stay for 4 days. They had a good time hanging out together and played LOTS of video games. :)
Thanks for all of the prayers, I will update you again soon.

Cherie

Locks of Love

On Sunday, Xavier's sister Ivy decided to donate 10 inches of her hair to "Locks Of Love", an organization that makes wigs for kids who have lost their hair due to illness. We are so proud of her for being a kind and generous kid! She loves her new haircut and could not wait to go to school on Monday and show off her new look. =)

X is hanging in there, we go to clinic tomorrow so I will update you on that soon.

Love, Cherie

Creeping Up

Well, X had his clinic appointment on the 1st and his counts are at 510. Not bad, but not great. His Dr is still keeping him off all chemo to give his body a break. We go back on the 7th for IV chemo no matter what his counts are, and his Dr will decide then if we get back to all of his oral chemo meds yet. I feel like we are always waiting for something...

X has been taking it easy but it is difficult for him because he feels good and wants to play. He is looking forward to this Sunday though, we are ordering "Wrestlemania" on pay-per-view for him so he has his calendar marked!

Keep X in your prayers for high counts next week. I will let you know how it goes.

Love, Cherie

Low Counts...

Well, it was fun while it lasted...unfortunately when X had his labwork done on Tuesday his counts were only 72. Which means no more outings for a while until his numbers come up again. His Dr took him off of all chemo for the week until his body recovers a bit. They thought about giving him a transfusion Wednesday but his hemoglobin count was up a bit so he ended up not needing it. He is pretty bummed to have to be stuck at home again, but we are hoping it is not for long. He goes to the clinic again on the 1st to see how he is doing, hopefully we will have better news. Hope you are all doing well and enjoying your weekend. Will post after his next appointment.

Love, Cherie

Post From X / Movie Review

Hey everybody. I have been getting out alot lately and I am getting my energy back. So far this week I went to a friends house, my Grandma Patti's house, the park, and I went to the movies! We saw the movie "Hotel For Dogs", it was sad, funny, and good all at the same time.I wanted to see it because I love dogs and all animals. My favorite part of the movie was when the kids invented all of the machines to take care of the dogs. The best one was the toilets with the pooper scooper bags! Thank you all for praying for me to get better. And a big thank you to my Colorado Fans for always posting comments. I like to read what you have to say and it makes me feel better. Hopefully I get my broviac catheder out soon, its a real pain and it feels like something sucking on your chest all day and night. My mom says it should be out in a few weeks. Gotta go now because I am watching wrestling on TV and I need to see if The Undertaker wins his match!

Love, Xavier

PS Thank you Uncle Del for my magazine subscription to National Geographic Kids

Out On The Town

Well, X had his clinic appointment yesterday and everything went well. He did his spinal chemo again without being sedated. He is one tough cookie! Even the Dr who did his procedure was surprised at how well he handled it. We had lots of questions now that X has been doing better and having more energy. His Dr said that he can go out in public a little bit now, as long as we are cautious and he doesn't overdo it. I think he is most excited to go to a movie. (a matinee, he will wear a mask, and we will sanitize his seat first...) Its hard to believe it has been about a year since he has been to the theater. As far as going back to school goes, I think we will play it by ear and see how he is doing. The Dr said he may as well just wait and go back in 6th grade, I thought he might want to go back at the end of this school year to be there for all the fun stuff...guess we will see who wins this battle. =) Like last month, we will do bloodwork in 2 weeks to see where his counts are (as of yesterday they were 780, not great because he has had a cold) and we go back to clinic in 4 weeks for chemo. I will let you know how he is doing soon. Maybe I can get him to post a movie review after we go to the theatre!

Love, Cherie

No News Is Good News

Things have been pretty quiet around here lately. Xavier is doing well in maintenance and on Tuesday we did labs for the first time in 2 weeks and his ANC counts were 1653, so it seems as though he is coming back strong now that his body is getting a break from all of the intense chemo. We go back to clinic on March 10 for spinal and IV chemo, and will hopefully find out how they think he is doing and when we can get back to doing more "normal" things. He should be able to go back to school in about a month or 2, so we will see what the Dr says. We can definetly tell X is feeling better because he is getting more "cabin fever" than usual, and is spending much more time outside in the backyard and has more energy to play. It is nice to see him acting like a kid again! I will let you know how things go after the next clinic appointment. Hope we have more good news to report. :)

Cherie

Maintenance!!!

We finally made it to the maintenance phase. Xavier's counts were at 960 on Monday so he was able to go to clinic Tuesday for a spinal as well as IV chemo. This phase will last 3 years, he will have a spinal and IV chemo once a month, and will be on oral chemotherapy meds that he takes every day. We only have to go to clinic once a month, and can do labs from home every 2 weeks. Also, some other big news...Xavier obviously hates to have his spinals (who wouldnt?) but the reason he feels that way is because he doesnt like the feeling when he comes out of the sedation because he is dizzy and nauseous for a while after. His Dr said that she does have some older patients who do spinals without sedation, and said he could try it if he felt he could handle it. He agreed to try it and did GREAT! All they use is a cold topical spray. He is so brave, the Dr and all the nurses were so proud of him! And...in 4 to 6 weeks they will remove his broviac catheder, and they dont need to replace it with an under the skin port-a-cath. His Dr said that for all further IV meds that X needs, they can run a regular IV in his arm. This is such a relief! It feels really good to finally have all of this good news to report. Hopefully there will be much more to come now that things are settling down.
Thanks again for all the prayers and support!

Cherie

Not Yet...

Xavier had his labs drawn yesterday, and we needed his counts at 750 to begin maintenance. Unfortunately his body is recovering slower than we thought and his counts came back at only 437. Much better than the previous count of 66 at least. I think his body just needs this break from chemo and we will be back on track again soon. He is scheduled for labs again on Monday, and if we are at 750 he will have a spinal chemo and a push of chemo in his catheder on Tuesday. We are all anxious to get going on the next phase but we are trying to be patient...
Will update you on Monday with his counts.

Cherie

The Waiting Game

As of yesterday Xavier had his last dose ever of Erwinia, which means no more shots in his legs!! It feels so good to reach a milestone! We are now waiting to start the maintenance phase of chemo which will last for 3 years. We were supposed to start maintenance tomorrow with a spinal chemo (Ara-C instead of Methotrexate since the reaction) but Xavier's bloodwork was not high enough. The docs need his numbers to be at 750, and unfortunately X's are 66. So we now have a week off to build him back up. We will do bloodwork again next Wednesday, and if he is at 750 we will have a spinal on Thursday Feb 5th. So please just pray that he gets stronger and we can get started on this phase!

Also, thank you so much for the outpouring of support and wanting to donate blood. Wendi has been recruiting at her work and is getting so many responses! CHOC is always in need, even if you are not a match for Xavier please consider donating for the many other children that need blood. Xavier's blood type is A+, and the number to contact the bloodbank is 714-532-8339.

I will update you on Xavier's counts next week, keep your fingers crossed for a 750.
Have a happy and safe Super Bowl weekend...Xavier says "Go Cardinals"!!!!

Home Sweet Home

I am glad to say that things have settled down and X is back at home where he belongs. He didn't get much of a break from chemo, he was released from the hospital on Saturday, and we were back at clinic for Erwinia on Monday. After everything that happened the docs will be removing the Methotrexate from his spinal chemo and replacing it with Ara-C.
The chemo right now is really knocking him down, X recieved a blood transfusion when we were in for fever on the 8th of January, and a platelet transfusion when we were in for the Methotrexate reaction. And now his counts have dropped again and he will be recieving another blood transfusion and platelet transfusion tomorrow. He is feeling pretty tired and is looking really pale so hopefully after tomorrow he will be looking and feeling much better. I also encourage anyone who is able to donate blood to please do so, his bank no longer has any blood from our designated donor plan and he is now recieving it from the general donations that CHOC gets, so if you can, please donate!!

Thanks,
Cherie

Rough Start

There has been so much going on, this is going to be a long post... First of all, I am unfortunately blogging from the hospital. On Jan 7th Xavier had been complaining of headache, before giving him any meds I need to take his temperature to make sure there is no fever. His temp was right on the border of being a fever, so after calling the Dr, I was able to give him some tylenol, but they wanted to follow up when we went to clinic the next day. When we got to clinic the next morning, his temp was 101, which automatically sends us to the hospital for at least 72 hours. We ended up being there for 6 days. The docs said it was most likely a reaction to one of his chemos called Ara-C. He also suffered from severe headaches during this time and needed IV pain meds to control them. The Dr also thought that these were a reaction to his spinal chemo called Methotrexate. On Tuesday the 13th we were finally released after X recieved his chemo (Erwinia & Vincristine)and we were so happy to finally be going home. Unfortunately it didnt last long. Wednesday afternoon Xavier had complained to me that his left arm kept feeling like it was asleep. I looked into some of the paperwork I have on his medications and the Vincristine he recieved the day before has the effect of numbness and tingling in the nerves. We never could have expected how things would end up. Later that evening we were standing in the kitchen getting ready to eat dinner and all of a sudden X looked at me and his voice got really high and he said that he couldnt feel his arm. He then started to lose some of his facial control and had difficulty breathing. I called CHOC to talk to an oncologist, but didnt get a return call fast enough, Xavier was continuing to lose control, couldnt breathe, was shaking, his speech was slurring, and he couldnt feel his left arm and leg...I had to call 911 immediately, as I was speaking to the operator, X was trying to fall asleep I was trying to keep him awake and alert until the paramedics could get there and help us. It felt like they were never going to get there. The Corona Fire Dept arrived first and got him stabilized and breathing normally again. The paramedics got there soon after, and we were transported to Corona Regional Med Ctr, in the ER they wanted to do a chest Xray, I guess because of the breathing difficulty, and they ran his bloodwork. The Xray came back fine, but his bloodwork showed very low platelets. Corona decided that X was stablized enough to be released, even though he was still on oxygen to help his breathing and he had numbness in his face and no control of his left hand. I wanted to strangle that Dr!! Xavier obviously didnt feel well enough to go home and I wanted him seen by CHOC. Xavier didnt feel well enough to be driven by Jared or I to CHOC so we needed the ambulance transport to the ER . Once we got there, the docs knew what they were doing. The Dr did a few neurological tests to see where X was at. His mouth was drooping on the left side, and his hand would not come out of a fist. The ER doc sent X to have a CT scan to look for bleeding on the brain. That test came back negative thank god, but we still had no explanation. Xavier recieved a platelet transfusion to stablize his blood, and we were then told that they wanted to admit us to CHOC and do a MRI as soon as possible to see if he had suffered a small stroke or seisure. We got to his room finally @ 3am and got a few hours of sleep. At 7 am they took X down to get his MRI. He had regained control of his face and arm by then but we still needed to know why it happened. Later that day we spoke to neurology, they determined that this episode was caused by a reaction to his spinal chemo called Methotrexate that he had recieved 8 days prior. His docs are now trying to decide how they want to continue with chemo. We will be released today as long as X remains stable. Unfortunately, he is a little afraid to come home because he is afraid of having another attack. We have talked with a psychologist here @ CHOC and he was very helpful in giving X some tools to help his anxiety. We are all afraid though, that is the horrible thing about chemo, you never know when or how their little body will react. Xavier has been on this Methotrexate from day 1 of chemo and this never happened before...Please, please keep him in your prayers. He is having a very difficult time right now. I will update you all again soon on his progress.

Cherie

Ready for 2009

Hello everyone, and Happy New Year. We are definitely hoping for a happier and healthier year. Sorry I haven't posted for a bit, the holidays were busy as usual, luckily Xavier had Christmas off, and didn't go back to clinic until the 30th of December. But we are back on, and at a rapid pace. On the 30th X had a spinal chemo as well as an 8 hour IV of cytoxan, a short IV chemo called Ara-C, and he is now on an oral chemo that is in pill form that he takes at night called Thioguinine for the next 2 weeks. This is all taking a toll on his body. Last week was pretty rough, and his hair has started to become very thin, and has changed in texture, so he buzzed it pretty short and is making good use of his hats and beanies. Jared cut his short too at Xavier's request. :)
We were at clinic every day last week except New Year's Day for the Ara-C chemo, and are starting back up this week for another round. Today X had another spinal tap so it was a long day for him. He is in bed now, watching the Star Wars movies and resting up for clinic tomorrow. We will be at clinic every day for the rest of this week for his Ara-C, and next week will be back to another round of Erwinia, which is the intramuscular shot he gets in his thighs. This is his last big phase of chemo though and as soon as we get through these next few weeks he will be on maintenance chemotherapy and things will slow down for him. Please keep him in your prayers, this is a long battle and he is fighting hard every day!