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!