Jason is still doing great. His checkup last week was perfect and we were able to take away another medicine. We are still slowing weining him of one of the immuno drugs but are getting there. Then he will just be on a couple meds to finish out the year and be great! We took extra blood for another cymorism test so cross your fingers it is still good. We did learn that he is producing O+ blood which is great news. Because that was the donors blood type!!

Austin is finally done with the 3 weeks of conditioning for football and this week we only have practice 3 times instead of 5. Then next week we are down to 2 days.

He will miss the first game though because that is when we are having our 3rd Annual PALS Golf Tournament. Lets hope we are able to raise enough money to help Cecelia and her family!

Jason is still doing great. His day 100 tests came back 100% donor. We are slowing taking him off his meds and he is allowed to get out more and more. Last week he went to the Cardinals traning camp with Uncle Robert and had a great time.

Austin is back in school and football practice. I love watching him out there.

Shawn is busy with work and school and doing great!

Wow didnt realize how long it has been since i updated everyone. Jason is doing great. We are waiting on the day 100 results to come back to see how the donor cells are working. He has been able to drop down on his meds to allow for the new cells to take over. Cross your fingers it worked. He is looking great and feeling great. School starts next week for the boys so working on getting school supplies and clothes and all the fun stuff. Also signed Austin up for football again so it is going to be a crazy year. Shawn working full time, going to school full time, and Austin in football along with all the other stuff we do. But hey that is what makes life fun right!! I will keep everyone posted. And dont forget we are doing our 3rd Annual PALS Golf Tournament 8/28 at Arizona Grand!!!

Wow didnt realize how long it has been since i updated everyone. Jason is doing great. We are waiting on the day 100 results to come back to see how the donor cells are working. He has been able to drop down on his meds to allow for the new cells to take over. Cross your fingers it worked. He is looking great and feeling great. School starts next week for the boys so working on getting school supplies and clothes and all the fun stuff. Also signed Austin up for football again so it is going to be a crazy year. Shawn working full time, going to school full time, and Austin in football along with all the other stuff we do. But hey that is what makes life fun right!! I will keep everyone posted.

And dont forget we are doing our 3rd Annual PALS Golf Tournament 8/28 at Arizona Grand!!!

Not a whole lot to report. Jason still doing great. Austin is in Iowa visiting his dad for a couple weeks. All is well for us.

Everyone have a great 4th coming up and be safe!

Sorry it has been so long since i have written
It has just been nice to be home like a family again
Jason is doing great. His blood work came back 99% donor and Tcells 91% so we are well on our way. They will do another test at day 100

Austin is doing great as always too. Got all A's and B's at school and is growing up so fast. When he talks and is all excited you can hear his voice crack :)

He is going to Utah to go white water rafting with the American Cancer Society next week. He doesnt want to go but will thank me when he gets back. There are only 16 people going. 8 Boys and 8 Girls. Duh!!! How many teenage boys turn that down. I guess its better than him being too curious...

Ok well everyone have a great weekend and i will try and keep up on this more. Always and forever thanks for all your prayers for my family.

JASONS HOME!!!

Jason came home on Wednesday. 21 days after his transplant! He broke the record. They were telling us to get ready for 6 wks- 3 mths and he breezed through it. Not to say there hasnt been issues. But he is doing amazing. Went to clinic today and adjusting some med levels but otherwise doing great!!! Way to go Jason

Sorry i havent updated in a while
Jason has had his ups and downs but overall doing great.
He has had infections in his blood and stool but they are being treated with meds. He has had the runs so bad that he has a bedside toilet but other than that he is amazing. Few fevers here and there and not sleeping that good but still making me smile

He has also shown signs of cell growth and has an ANC of 91.

We are on the road to recovery!!!

Jason is doing amazing. Small reaction to the ATG but they slowed down infusion rate and is back on track. It should have finished up earlier this morning. Just laying low today and getting ready for his transfusion around 9:30 tonight.

Today is the best day ever!!!!

Jason is doing amazing. Small reaction to the ATG but they slowed down infusion rate and is back on track. It should have finished up earlier this morning. Just laying low today and getting ready for his transfusion around 9:30 tonight.

Today is the best day ever!!!!

OK we are well underway with Jasons treatment. He is done with 2 of his chemos' and is getting the last one today and tomorrow. This is the one that runs over 6 hours and he could get sick from. It is Rabbit ATG. So Robert my brother made Tshirts with Jasons face that say THUMPER! Always the jokster. All is going good so far and Jason hasnt gotten sick. But like i said he got the 2 strong ones today.
The infusion is scheduled for Wed nite so we are really excited for that. His dad finally made it in last night so i am getting a break and am at hope for a couple of weeks. Though i like being home i feel like a bad mom not being by his side. But I am having fun with Austin and Shawn. Austin is so funny he cracks me up to see how big he is getting.

Will keep everyone informed on how things are going. Pray that my baby does good and doesnt have too many side effects

We have been around the world and back having people look at Jasons liver biopsy to see if that will give us any idea what is going on and why his enzymes are high. They did find one small virus so he is getting medications for that but looks like the main irritation is the iron levels. So we go admitted yesterday and are moving forward with transplant. We will start chemo around noon today and continue on for about a week with transplant scheduled next week. I am thankful the donor is still willing to do all of this as many times as we have rescheduled. Jason doesnt express much concern about what is ahead. He just goes with the flow so that makes it easy. He loves being in this hospital i swear. He is more relaxed here than at home. Playing games and smiling all the time. This kid is amazing!

These last few weeks have been crazy. We were supposed to go to the hospital March 8th to start chemo then transplant. That has gotten postponed several time because Jasons liver enzymes have been elevated to a point where the doctors didnt think his liver was ready.We were admitted last Wed and we were supposed to start chemo Thursday but his liver was still too high and it also felt larger to the touch. They decided to do a liver biospy Thursday and we found out why he has been having these issues. We thought origionally it was due to the chemo or to all the meds he was one and that they would go down on their own. But the biopsy showed that it was actually high doses if IRON in his liver. You get that build up over time due to the number of blood tranfusions he has had over the last couple of years.So there are 2 ways to fix this. Bleed him out( take a bag out every month for 6 mths) Not an option we dont have that kind of time OR with meds. But those again take 3 months to get back to normal levels. So we are going back Wed and starting chemo with transplant next week and will have to keep a close eye on his liver and hope that it can take it.We have also changed to a stem cell transplant with low intesity chemo instead of bone marrow and high dose chemo.We have to watch the liver and once the new cells graft then we can start the meds. So long story short i have been stressed and we all just want this to start so it can end. thanks for keeping in touch with me and please feel free to pass this on.

Latest UPDATE

We arent going in now until 4/13 because the donor center wasnt open in observance of the Easter holiday. So now the transplant is rescheduled until 4/21.
We go in tomorrow to clinic for an appt and again on Friday..
so you never know things could change even tomorrow..

Today is the day

Well we have been home for over a month and it still doesnt seem long enough. We go in today and get settled and start on fluids as well as a slow continual heprin drip. Then tomorrow we start chemo for a week then April 8th or 9th is the day of transplant.
Jasons liver is still elevated so we are doing reduced intensity chemo and a stem cell transplant.
We are hoping that the Tcells in the transplant kill any remaining Leukemia that the chemo didnt get.

We did find out an interesting fact about Jasons donor. She is from Europe!!! Jason is so special we had to look world wide to find the right person :)

I will keep everyone posted on his progress. He is strong and i have no doubt in my mind he will be ok just getting through this is all so hard. You have no idea how i feel inside. My whole world is turned upside down. I just know when we land again we will be even better off than we are today!

Jasons levels are coming down as of Friday of last week so that is a good sign.
We go in again today to check his levels again to decide on what chemo regimen he will be getting. Cross your fingers his counts are good and he can get the high dose chemo as that has a better long term cure rate. Not that the lose dose doesnt ( that is the kind that adults get when they have transplant because they cant handle the high dose) but we all know Jason is strong and will be able to take it.

Tomorrow is a half day for Austin so when he gets out of school i am taking the kids mini golfing with some friends so we can have a little fun.

We go back in one week from today. Man how time flies when you are home.

Will update you all on what we here today

Nothing new to report here. Jasons levels are still high so we will continue to keep him off meds to see if that helps. We go back Wed for another appt to check the levels. He is still doing great.
We did family pictures in the backyard yesterday. That was like pulling teeth. Boys can be so stubborn.

The plan is so far to be admitted on March 30th to get ready for transplant. Everyone pray his Leukemia stays gone until then and this little cold he has is just that. A cold and nothing else~

Well yesterday we had to go to the clinic to check Jasons liver enzymes again. Still way to high to start transplant tomorrow. They are actually going up. So they asked that Jason stop all medications and we go back in on Friday for more lab work to check the levels again.

The plan for now is to not do a bone marrow transplant but to do a peripheral stem cell transplant.

Basically that is putting more mature cells in your body from the donors blood than getting baby cells from the marrow. Better chance of cure, more chance of GVHD (graft vs host disease)

So alot processing in my head right now.

Jason looks and feels great though so that really makes me feel good.

It is spring break this week so him and Austin can fight all day like brothers do. The fighting drives me nuts but i let it slide so boys can be boys

A lot at stake today

I know i havent updated in a while. There has been alot going on. We got home about two weeks ago. WOW were we ready. I am ready. I am starting to hate the hospital. We miss being home and the stress is starting to break me. All the sick kids around me and all the things going on are really breaking me down and i just sit there and cry. Jason runs to me (moves from his bed to my couch) and sits and my lap and tells me it will all be okay and dont worry. I keep asking him "why do you always have to comfort me when you are the one that is sick?" He is so strong i dont know how he does it.

He had to come home on IV meds which scared me since i am not familiar with how to do all that. So we get an IV pole and run his medication through every night. That has been a challenge in itself because i miss a step or do it wrong. I get so stressed out about it that if i just relaxed it would be ok. He knows how to run it all and will catch me but phew it makes me nervous.

So transplant is supposed to be around middle of next week. But his liver is elevated and at this point no where near able to handle transplant. I have to take him back today to test his levels and see what direction to go.

It just doesnt right. You look at him and he is fine. We actually had to take him to the barber the other day and trim his hair. He is so strong the chemo doesnt make it fall out.

But next week will be another story. I have to hold back tears when they tells us all that is going to happen. It is scary to think of my little one having so much put into his body and hoping it works.

We did find a donor. A 22 year old female. That is all we know about her. But she is a live saver. Whoever you are i owe you my own life.

OK gotta stop now or i will start crying and i have alot of work to do today.
Shawns bday is also tomorrow so gotta plan something.

Will keep everyone udpated!!! Thanks again!

Jason is doing great as always. He is getting blood today. Was looking pretty pale. His counts are playing around a little but growing so i hope we get to go home within the next week or so. We have been here since Jan 22nd and i am ready. So far the plan is to get us out then back around March 8th then transplant around March 15th. That is if everything goes ok with the donor..which we still dont have one nailed down. They have 2 that are good and another one came in yesterday so they are ordering the results to be expedited..then once they have those results will pick the best out of the 3..such a long process but so worth it for my beautiful son.

As for my other son..wow he is growing up so fast and i never see him it seems like. I feel like i am missing out on such an important part of his growing up. So thankful for Shawn for all he does

Jason is still doing great. No ANC yet but patiently waiting.
He got plateletes yesterday and getting blood today
I am going to get Austin today to bring him up so they boys can hang for a while. They havent spent time together for almost a week. And i miss seeing them interact.

Update on donor...
We had 4 come in
2 are too much of a mismatch so they arent canidates any longer.
1 is still in the running although they are a KIR match and we are looking for a mismatch if possible
The other is in the running we are just still waiting on KIR results
And one more person coming in on Feb15
So WOW we had 5 potientials. Feel pretty good about that

Will keep everyone posted.

Thanks to Shawn for all the love and support you give..I hate that my family isnt together and i am so glad i have you to lean on. I love you babe

My dad is going to stay here Sat night so we are going to hang out with Austin and take him putt putt golfing and goofing around. I cant wait!!!

OK the infection came back as Ecoli but he is doing good. Only fevers that one day so he is doing great. Smiling and laughing and doing homework. He is reading over my shoulder as i write this so i better be nice...Jason says hi to everyone.
Thanks Daphne for the cinnamon rolls..

Yesterday about 4am Jason started getting a fever. Then by 8am he was shaking, vomitting, sweating, in pain and feeling like crap. So of course they do the normal steps of starting you on 3 antibiotics and drawing blood to see if you have an infection. He seemed to get a little better through out the day and we just layed around and dozed in and out. Then again around 6pm he was back to having a 101.8 fever. The nurse came in and said he has a bacterial infection in his red line of his broviac which is why he is getting sick. He has nothing in his system to fight off the infection. So lets pray the medicine does the job.
This am the nurse came in and said that she is surprise he is doing as well as he is with this type of infection. The kids ususally get more sick. But you know Jason...hard as steel. His hair still hasnt fell out from this round. He is such a great kid

Yesterday was a fun day. Jason has alot of homework he needs to get done this week and of course they needed to give him 3 units of blood yesterday so he slept all day. The day before he slept all day cause his blood was low in his system. Poor guy cant win for anything. He had a reaction to the platelets and was getting leg cramps and hives all over his body and started coughing. He also hasnt been able to poop for about 4 days so they are loading him up on meds to make him go.
Finally last night around 12:30 am he was done getting his blood with no reactions and as we are trying to sleep there are code red alarms being announced over the loud speaker. The roommate is trying to go to the bathroom and is hitting everything in his path with his pole. I guess after so long the noise just becomes back ground noise.
I know these kids hate being here and i feel so sorry for them.
I just wish this would hurry up and get done!!!

Done!!!

Yesterday was the last day of chemo for this round. So now all he has left is to just sit and wait for counts to drop then rise again.
Then we get to go home for about a week before transplant.

Still no word on transplant donor yet but will let everyone know when we here!!!

I should stop being so nice. Because i am we keep getting baby roommates and we arent sleeping at all. Jason was feeling better yesterday and then he got sick around 10 then leg cramps. He wanted to sleep but our new roommate is a little boy who just got here yesterday so he and his parents are freaking out and the little guy was crying all night. I had the nurse give Jason Morphine so he could sleep. They said they would add Ambien to his list of meds so he can have that if need be.

Shawn has some for me but how bad would i feel if i was knocked out and something happened.

The hospital is doing a fashion show today with the Cancer network and they had the inpatient kids decorate the yellow isolation gowns. Jason put a king crown on the back and said "2nd floor king" then on the front we did $ signs and glued fake money and coins.

Oh the stupid things we do to entertain ourselves

Jason is doing good. His marrow is at zero so he is set and ready for transplant. But since we dont have a donor yet and the search is still on we are doing another round of chemo. We got here Friday and it already seems like forever. Last night was the first fever so i am super tired since we didnt sleep at all. But he looks better today little by little. His body has a red rash all over it from the chemo and he has a headache whenever he moves but at least he is up watching TV. I got alot of his photo albums caught up yesterday while he was napping so that was nice too. And every Tuesday in the cafeteria they have scrap booking for parents so that will be an easy way to get them all done.
Will be in touch!

Good morning everyone. Thanks to all that showed up this weekend for Jasons bone marrow drive. We had about 200 people show up and get tested. That is great. All it takes is one person to save someones life.

He is doing great right now. Last appt showed all good and bone marrow was down to 2%. So we are proceeding on with another round of chemo starting this weekend and then i am thinking sometime in March will transplant.
His enzyme levels were high in his liver so taking him off some meds to see if that can be corrected.

Other than that nothing much going on. Happy 75 bday to my father in law Jimmy this weekend. Hopefully i can sneak away to see him!

Jason is doing great. Nothing new to report. We are just hanging out at home waiting til our next dr appt on Friday. At that time he will get a bone marrow test and routine clinic visit to make sure all counts are good and no need for transfusions. This weekend we are having a bone marrow drive. Everyone please make all efforts to attend if possible

Location: Glendale Fire Staion # 151 Date: Jan 16 Time: 7am -11am
6851 N. 52nd Ave., Glendale, AZ

Location: Cheatham Primary School Date: Jan 16 Time: 7am -11am
4725 W. South MTN Rd., Laveen, AZ

Location: Gilbert Fire Station # 1 Date: Jan 16 Time: 7am -11am
2730 E. Williams Field Rd., Gilbert, AZ

Location: Hall of Flame Date: Jan 23 Time: 10am- 3pm
2730 E. Williams Field Rd., Gilbert, AZ *Lunch event- Hot Dogs will be served
Contact: Aubrie 602-277-1390 or Oscar 602-277-1002

Jasons ANC is 323...that means he might get to come home today. It has to be at 250 so we are checking with the doctors. We still need to get all his prescriptions filled , i have to go to the hospital and change his dressing , get signed off that i remember how to do that..i sure didnt miss giving that up. Then i want Jason to shave his head before he comes home so he isnt leaving a trail of hair everywhere. Just had the cleaning lady come over yesterday to get the house all clean and ready for Jason..all laundry done and room ready. So a busy day ahead along with trying to get all my work done with my job.

Boy i sure have missed having a house full. He left on Dec 8th..it goes fast but drags at the same time.

For several weeks he hasnt shown any blasts so that is a good sign. But i am sure in the next week or so another bone marrow test will need to be done to make sure.
I will keep everyone posted. Still no news on a donor but having a big drive on Jan 23rd so details to follow

Jason is doing great. Everytime i talk to him on the phone i feel so sad i am not there then i go see him and he makes me laugh. He can certainly brighten up anyones day.

The swelling has gone down in his mouth and nothing ever showed from the scan so must have been some kind of infection.

His hair is falling out like crazy. I told him we need to shave it off at the hospital because i dont want to follow him around with the a dog brush!