Hectic Schedule

We are finally back online!! I had to get a new modem for our computer, so sorry we haven't updated lately. I will be the first to admit that I am not the most technologically savvy. Anyways, we are back to a crazy schedule with X's chemo. We started the new phase on the 4th, he had a spinal, IV chemo, and is back on steroids. Things have been pretty tough on him, the steroid is a new one he hasn't had before. He goes 7 days on and 7 days off of it for the next few weeks. His Dr said they have to do it this way because it is a stronger steroid, and if his body doesn't get a break every few days, it causes nerve damage and pain in his joints. There have also been more side effects with it, Xavier has had lots of trouble sleeping, as well as severe headaches, mood swings, and stomach cramps. Yesterday was his last day on it for the week, so we are looking forward to having him back to normal for a few days...
He is also back on Erwinia, so he is getting shots in his thighs every other day for the next 12 days. Next week we will be at clinic every day but Tuesday so things will be busy right up to the holidays. This year it is so hard to get into the holiday spirit. I look back to last year at this time, and how things were so different. Xavier is being brave as usual though, and we are so proud of him. I'll post again soon.

Cherie

Im Thankful For...

Sorry it has been a while since the last post...there are 2 big reasons for that, first: our computer modem died and we have yet to replace it, and second: Xavier was in the hospital again last week for 4 days. He was running a fever again which was a pretty big one this time, he hit 102.5 so the doctors wanted to do the usual blood tests , antibiotics and IV fluids, as well as a secondary antibiotic to knock out whatever virus he was dealing with. It was a long 4 days, but we are happy that we got everything handled before Thanksgiving. Xavier's appetite is coming back so he is anxious for tomorrows feast! We are so thankful that he is handling treatment well and responding as he should be. As well as being thankful for the support we have from all of you, our friends and family.

November 17th marked X's last chemo for this phase of treatment. As long as his ANC is at 750 or more he will start the last big portion of chemo which is called Delayed Intensification 1 on December 4th. This phase will be 57 days, which include 3 spinal taps, IV meds, as well as a new oral medication called Dexamethazone, and oral steroids (guess I dont need to worry about his appetite anymore). He is not looking forward to the steroids, they make him super hungry and give him the "moon-face" where his face gets that swollen appearance. After the end of this phase he will go into a maintenance program for the reminder of his chemo, which will eventually only be once a month treatments. I cant wait! I will let you know how the new treatments go.

Have a happy and safe Thanksgiving!

Cherie

Much Needed Break

We are finally at the end of this phase of chemo called Interim Maintenance. Xavier was at clinic every day last week but Tuesday for his Erwinia shots as well as a spinal chemo on Thursday. We are so glad to finally slow down! We have to get labs done on Friday the 14th and then he has IV chemo next Monday the 17th, but that is all we have for the next 2 weeks. According to the Dr the next phase of treatment is similar to what we have been doing with Interim Maintenence, but there are different meds involved that we have not had yet. I will let you all know once we get to that point. We are still having issues getting him to eat, he lost about 4 pounds this month. (So thanks for the recipe ideas Annette, he liked the chicken stir fry). I think we are going to try protein powder or meal replacement drinks to supplement his diet.

Thanks for the prayers and support.

Cherie

Racking Up The Miles...

Hi Everyone,
Well, our schedule is somewhat back to normal, and I am proud to say that we have finally kicked the flu bug and stayed away from the hospital for 2 whole weeks!! Last week X went back on Erwinia, so our schedule is pretty crazy. We will be at clinic every day this week except for Tuesday, thank god the gas prices are going down. Xavier has been feeling pretty well lately, and handling the chemo well. He got out of the house on Halloween and did get to trick-or-treat for just a little while. He is so responsible, after 2 streets he decided that it would be better for him to stay home and hand out candy. Hopefully we will have a little break after this week. I will let you all know how things go.

Cherie

P.S. Don't forget to vote tomorrow! Go McCain/Palin!!!! Xavier has been campaigning to the nurses at clinic. :)

I Hate Flu Season!

Well, last weekend we were back in the hospital. Xavier was running a fever again when we went to clinic on Thursday and they admitted him and ran a bunch of tests to see what's going on. So after lots of bloodwork, a sinus Xray, and a chest Xray, all we know is that he caught whatever bug is going around. Unfortunately because his immune system is so low he can catch something and not be able to recover like he used to. He had 3 days worth of IV antibiotics as well as an IVIG which is an 8 hour IV drip of immune boosting serum. We were released on Sunday and he is doing much better. Fever free! As long as his counts are good he will start next Tuesday with Erwinia again. We are moving along as best as possible. He is trying really hard, and we are so proud of him. His appetite is nonexistent so I am trying everything to get him to eat better (he lost 2 pounds last week). If anyone has any yummy recipes to pass along I am willing to try anything!


Cherie

Busy Weekend...

Never a dull moment around here. The good news for this post is that Xavier is doing really well with the new medication, Erwinia. It's no fun for him to get shots in his legs every other day, but he is handling it like a superhero! (and so far no allergic reactions either). The bad news from this past weekend is that we spent it in the hospital. Xavier had an appointment for chemo on Friday, and when we went in he was running a low fever. They checked him again 2 hours later and it wasnt going down so his Dr. advised that we admit him to keep things under control. They took great care of him and had him on IV fluids, as well as IV antibiotics for 72 hours, which is standard procedure for cancer patients. Unfortunately, this is the rule everytime he has a fever. They cant be too careful in our situation. So it was a long weekend, and we are so glad to be home.

X has appointments for the next 3 days and then he gets a 9 day break which we are SO looking forward to. Hopefully I will get him to post here soon.

Love, Cherie

Re-adjusting

Well Xavier had spinal chemo Tuesday, and it was pretty rough for him. I think that since he has been on a break for a bit, getting all those meds really hit him hard. He also started his new med, Erwinia, which is the shot in his thighs. He will be getting a shot in each thigh every other day equaling 6 total doses. Yesterday was his first dose. and he did pretty well. He started to get a scratchy feeling in his throat last night so I called the oncologist and she told me to give him benadryl every few hours for the next 24 hours. It seemed to help and we made it through the night without having to go to the ER. We will be pretty busy for the next 2 weeks since we have to go to clinic every other day. I will post again with his progress soon.

Cherie

Finally!

After 3 weeks of waiting, Xavier's counts are at 1320. We start chemo again tomorrow, I will let you all know how he is doing and how he responds to the new med.

Thanks for the prayers!

Cherie

Not There Yet

Xavier's lab results were not where the needed to be last week. They need to be at 750 and he was at 648. Close but they still want to have his body build back up on it's own before we hit the chemo again. We had labs drawn today and are waiting for results. If they are 750 or above, we have an appointment tomorrow morning for spinal chemo, and then for the next several days he will need the intramuscular shots in his thighs daily for 6 days. Wish us luck.

Also, thanks so much to Grandma Connie, she was behind the mystery of the Yankees bat. =)

Will update you again when we have results.

Cherie

Xavier's Newspaper Article

Here is the link to the article in The Press Enterprise about him using the webcam for school. It's a great story and we were all excited to see it in the paper!

(I hope this works....still new to the blogging thing)


http://www.pe.com/localnews/corona/stories/PE_News_Local_W_wwebcam26.2389558.html

On Hold Again

Hi Everyone,

Well Xavier was supposed to start his next phase of chemo this Wednesday, his ANC counts needed to be 750 to proceed. Unfortunately his levels were only 109. Which means his docs want him to take another week to try and build up his immunity. We are scheduled to start next Wed as long as his labs come back at 750 so keep your fingers crossed.

I also wanted to ask everyone if they had anything to do with a really cool thing that happened to X this week. A few days ago Xavier recieved a package from another Xavier, Xavier Nady of the New York Yankees. It was an official Yankees autographed baseball bat! He was so thrilled! (Jared was too!) So thank you to whoever is responsible for that fun and exciting surprise. There was no note enclosed and the return address was the New York Yankees Clubhouse, Bronx, NY.

I will keep you all posted. Pray that his numbers come up so we can get back to chemo!

Love, Cherie

Another Busy Few Weeks...

Hi Everyone,
As usual we have had alot going on. Since the last post (sorry it was so long ago) we have had another allergic reaction to chemo. X recieved another PEG, which is the one he had a reaction to last time. They premedicated him to try and hold off any reaction, but within a few hours of being home he started to not feel well, and was getting a lump in his throat. I called the oncologist and was told to go to emergency, since they do not want to mess with a reaction that involves obstructing his airway. He was immediately given a steroid shot to bring down the reaction, and was then admitted to CHOC for 24 hours of observation. He is doing fine now and the PEG chemo has been removed from his protocol now and replaced with a drug that has a lesser possibility of reaction. This new med is called Erwinia. So as of this past Tuesday, Xavier has completed the Consolidation phase of chemo and is moving on to the next phase called Interim Maintenance 1. This phase lasts 57 days and unfortunately includes 2 rounds of spinal chemo, as well as the new drug which is now given in his thigh muscle for a 6 day span. I dont know yet if it is every day for 6 days or every other day for 6 days. Either way it will be tough on him so please keep him in your prayers. I will update the blog when possible and let you all know how his progress is going.
On a lighter note, Xavier has some exciting things going on to cheer him up. Tomorrow X will have his first classroom experience via webcam with his classmates in his 5th grade class @ Susan B Anthony Elementary. His teacher Mrs Jones got the webcam for us at home as well as one for his class at school donated by our local Best Buy store. He is really looking forward to being a part of his class! Another exciting part about this is that The Press Enterprise will be there to document it because they are doing an article in the paper about him. So look for that soon!

Cherie

Back On Track

Hi Everyone,

We have had a busy few weeks around here. We had a tough time starting about 2 weeks ago. As Xavier said in his post, the previous rounds of chemo really knocked down his immune system. To continue on his treatment plan his ANC counts needed to be at 750. Unfortunately his were at 144 and so the Dr's wanted him to take time off to get his immune system built back up. He also has developed an allergic reaction to the antiseptic solution called Chloroprep which we use to clean his chest catheter. It started out small and within a few days had spread all over his chest. It was bothering him pretty badly last weekend and on Sunday I called one of the oncologists to see what I could do, and he sent us to the emergency room at St Joseph's Hospital. The docs say he has contact dermititis and so they put him on a stronger antihistamine as well as a steroid to combat the reaction. I was also told to switch his cleaning process on his chest to alcohol and iodine, and a gauze and paper tape dressing instead of the tegaderm patch. Anyways, I am glad to say that it is starting to clear up and, as of Monday Xavier's ANC count was at 2189. So we are back on track for chemo which started up this past Tuesday again w/ an 8 hour clinic visit, and we will continue to have to go back thru Friday. He then gets a few days of break, and goes again from Tues-Fri. I feel like I go on autopilot to CHOC now. :)
Thanks again for all the prayers and support. Hope everyone has a happy and safe Labor Day weekend.

Love, Cherie

Post From X #2

Hi everybody thank you so much for all the messages. I am glad to hear that all of you are praying for me. This has probably been the toughest time of my life so far and my dad says its just another thing I have to power through. My blood levels are very low they are supposed to be at 750 but right now they are at 144. So I was not allowed to do chemo this week. I had an allergic reaction that produced red itchy spots on my chest near my catheder. Its very hard not to scratch my chest. Sometimes I get bored but not all the time because I just got a new game called Mario and Sonic at the Olympic Games its very challenging but very fun. There is nothing else to say but keep praying because I will always need it.

Love, Xavier

Don't Get Too Comfortable...

Sorry I haven't posted sooner but we have had a hectic schedule. Xavier's treatments have been going well, but we have had a bit of a scare recently. Last Thursday the 7th X had his usual clinic visit, spinal chemo, IV push chemo, and also an intramuscular chemotherapy drug that is given in each of his thighs called a PEG. He had this PEG the day he was discharged from the hospital. This drug is known to cause allergic reactions, so the 1st time he had it we had to wait 4 hours to see how he would do. He did well with it the 1st time, so we assumed he would do fine w/ this one as well. We stayed at clinic for 1 hour after he had all of his meds so they could keep an eye on everything, and we were discharged w/ no problem. He was sore but no other major issues. We went home and had been there for about 3 hours when X came out of his room and said his lip felt funny. I looked at him and his eyes and mouth were swelling up! I immediately called the Dr and was told to give him benadryl now and come back to the clinic at once so he could be taken care of, and was also warned that if he had trouble breathing I would need to go to the nearest emergency room. Needless to say I made it to CHOC in about 20 minutes! Thank God for Fastrak! We arrived and Xavier received a shot of hydrocortisone for the reaction. He also needed a blood transfusion because his lab results showed that his hemoglobin levels were too low. His blood was from the designated donor program set up for him at CHOC. The nurse was not allowed to give me the name of the donor but if your donor # is FE20709 we want to thank you and let you know X received your blood! We appreciate the donations so much and you can see that they are truly needed. Anyways I am happy to say X is doing well now and over the allergic reaction. This was a definite reminder that we can't get too comfortable in our situation, you never know what can happen. Thanks again for the love and support.

Cherie

The Littlest Soldiers

The medals on our chests
Are port-a-caths for meds
Helmets won't stay on
'Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For we are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our life is our reward.


*this poem was posted at the clinic today and I had to share it with you. It is so hard to put into words how hard this situation is, and this poem said it all beautifully.

Love, Cherie

Post From X

Hi everybody I feel fine.Thank you for all the messages you all have sent me.I feel like i'm in house prison, and i'm bored out of my mind!I went to the clinic today and had a procedure.They call it a LP but that just means lumbar puncture. They put medicine into my spine to kill the leukemia.I dont like doing those because it makes me nauseous when they put me to sleep.
I start homeschool next week for 5th grade with my 4th grade teacher Mrs. Jones. She is really nice.I never thought I would want to go back to regular school so bad!I dont have much else to say so I will write again later.

Xavier

Treatments have begun for the consolidation phase. Yesterday we spent about 8 1/2 hours at the clinic, Xavier had a spinal tap of meds, as well as IV chemo. He has been complaining of alot of soreness in his back. It is to be expected considering all of the procedures he has had! We are also dealing with more nausea w/ the new medication he recieved this morning. We are needing to use the nausea meds that were prescribed more now than in the 1st phase of treatment. He is being so brave and strong, I can't even begin to explain how proud Jared and I are of how he is dealing with everything! When X is feeling a little better he will post his own thoughts/opinions. So look for that soon!

Cherie

July 22, 2008

Xavier was diagnosed with Acute Lymphoblastic Leukemia (ALL) on June 16, 2008. He began the first phase of chemotherapy which is called induction and lasts 29 days on June 19. His doctors ordered many different medications and treatments which included, IV meds weekly, daily oral prednisone ( a steroid ) and weekly spinal tap meds. He has tolerated everything relatively well, with only nausea and fatigue. July 17 was his 29th day and the end of phase one of chemo. His doctors performed a bone marrow test, spinal fluid test, and an MRD test to determine how well his body has responded to treatment. We are so pleased to say that after the doctors reviewed the results X is in REMISSION!! We now will be moving on to the next phase of treatment called consolidation, which will start this Thursday the 24th. This phase will last for about 2 months. Unfortunately this will be more extensive and we will be going to clinic 4 times a week for 2 weeks, then 2 weeks off, then 4 times a week for 2 weeks again, and 2 weeks off. These will be new medications, and we dont know how Xavier will respond to these meds and what the side effects will be. We still have a long road ahead, even though X is considered to be in remission, his treatments will continue for 3-5 years. We appreciate your continued prayers and support, and will do our best to keep you updated on his progress through this blog. Feel free to post messages as well, we would love to hear from you! Xavier will be posting his own thoughts as well, so we hope to hear from you all soon! Thank you so much for your love and support. And a special thanks to Wendi for setting this up for us!! :)

Love, Cherie