Day by Day...

I know its been awhile since the last update, I guess you can say, it took us a bit of time to bounce back from some hard times (mentally).

First off I would like to say, thank you for the encouraging comments. We all really need to hear words like that, so thank you very much, I read each and everyone of them. It's obvious to us now that the physical battle has seemed to be won, but now it appears mentally...things can be challenging for us. That's when we really need those prayers, so please keep them coming.

The weekend of Shawn's birthday, a fever that we thought may keep us home never rose high enough to put us in the hospital. Thankfully, God had other plans for us! We were able to go ahead with our plans for the weekend and head to San Diego. It was more than needed! There is a wonderful lady that gets her hair done at my sister's shop, named Patricia who has cancer herself and has really taken to Jordan's story, so she actually blessed us and because of her we were able to get away for a much deserved weekend get-a-way! We took the boys to Supercross (you see...they have two passions...baseball and motorcycle riding)! We actually went into the pits and they got to get pictures and autographs of some of their favorite riders. Supercross was a success and the rain didn't even ruin it! Jordan also got to go swimming for the first time in a heated pool (because he has a port now). He was like a fish out of water! Again...another milestone moment for us! The time away was so needed, we were actually able to enjoy life outside of hospitals, doctors offices, and always being at home, but mostly just to simply...BREATHE. It lifted our spirits more than you know for all of us!

The last time we had Jordan's counts checked, about a week an a half ago, they were on the rise. We are due back this Monday for the once a month light chemo through his port and I'm sure his counts will be checked again. I'm hoping they will be even higher at this time. What does concern me, is where they will be about two weeks after this chemo that is due on Monday because there is a chance they could come down again and we don't want that. The beginning of the maintenance phase is somewhat of a roller coaster and it will take some time to regulate his medicine in order to get the counts were we want them to be. I can happily say that Jordan appears to be getting stronger everyday. All he needed was some time to see that yes...there is life after this nightmare he has been living. In fact, we all needed to see it! Also, what we're seeing is hair, it's coming back and this pleases him tremendously!! He always took such pride in his hair, I don't think it can grow back fast enough for him.

We also have the start of Little League season upon us, which as you all know gives us much joy. Shawn will actually be managing Tristen's team in the Major division this year, which will give us something new to focus on. To much of our amazement it appears Jordan will be playing as well (pending a doctor's approval of course). We figured it would of been more towards the middle of the season but no...we figured wrong. He is more than ready!! He plays all the time with Tristen. His heart and mind are totally focused on baseball right now. He may not start off the strongest but I'm convinced, its just a matter of time that he'll be playing up to par and we'll be seeing that attitude out on the ball field that drove us so crazy! You see, he plays with heart and sometimes that shows out on the field (whether we like it or not), but you know...it's that feisty attitude that won his life back! And now it's that feisty attitude and determination that will allow him to play ball again, just bringing him one step closer to regaining his life back!!

I often find myself feeling like how a new mother would feel watching her newborn baby. I look at him and appreciate his life so much more now. Him being able to eat, laugh, and play with his brother does not go unnoticed anymore. Just to lay entangled with him on the couch and to feel the softness of his skin, to rub his ear lobes, to see the fullness of his lips, to run my check against his new hair growing in...that's what fills me up. I know now how precious life is and I'm constantly thanking God for allowing us stay a family of four.

It's still a day by day thing with us, but I do feel it's getting easier and on those days that aren't so good...I'll be looking forward to the next day when we wake up and Gods Mercy and Grace will be new again!! That's what keeps us going...

Maintenance Begins...

On Monday, January 25 Jordan officially started day one of the maintenance phase. On that day the port-a-cath was finally inserted into his chest. He was sore the entire week from that but finally started to move around the next week. His blood counts are currently low, this Monday we go in to check them, I am hopeful they will start rising.

I had stated earlier what chemo was expected for him to take on the maintenance phase, but was unaware of another chemo pill he would have to take once a week. Unfortunately, every Monday he will be taking an additional eight and a half pills. These pills do make him feel nauseous the next morning.

Jordan has been fighting a low grade fever for the past couple of days which throws us into a frenzy because any temp over 100, and we are hospital bound. That alone makes us sick, we are so done with the hospital to put it mildly! Not to mention, anything he may get caused by a fever could not mean good news in his weaken state. So...we are constantly on edge and living in fear it seems. I hate to admit it but, we are human and living a normal life without worry seems so far away at this point.

To be honest, things have not seemed as easy as I had anticipated. The past two weeks, Jordan has been very scared the leukemia could come back. He's been sad and crying a lot saying, he does not want to fight anymore and is done going to the hospital. Three years out seems way to long for him to handle at this point. He gets it...more than we think and it breaks my heart to see the worry on his face.

Shawn, myself, and Tristen have also been struggling in our own ways as well. It is as if we are under attack and our happiness is being stripped away from us. Fear and worry has consumed us lately. You put stress into the mix, and your days seem unbearable. I try my hardest to keep these feelings from Jordan and hide when I can, just to shed a tear. Shawn has a hard time at work because he is constantly worrying about us. Tristen seems to never want to leave Jordan's side and feels overwhelmed at times. Sometimes, staying positive is harder than you would think. Lately the battle has been in our minds...some days we feel so pressed down on every side and we wonder when this load going to be lifted. This is when we lean on family to be encouraged, and this is when I get into the word, and when I pray and give all to God.

I had a friend tell me when Jordan was in ICU at Loma Linda that we need to place Jordan at the feet of Jesus and say take him...he's yours, its out of our hands, we can't do it all, only you can Lord. That's what I've been doing this week, surrendering it all to God. At the end of this journey, when Jordan is through with this next phase, we will look back and say, Thank you Lord...you did not fail us. Thank you for carrying us through in our darkest hours. We will be stronger than ever before, we will know that trials and tribulations may come, but that we can be victorious in the end.

I like would to say a very special HAPPY BIRTHDAY to my wonderful husband. He is the back bone of this family. He keeps us going and lifts our chins up when everything seems to overwhelming. He never lets Jordan or Tristen get too down and always says, let dad worry about it, I'm here, I'll take care of you. Without him we would be lost. He brings the ease we need in our home and always makes everything better. We love you!!

I've let it all out, you know where we're struggling...we're obviously battling still. What else can we do but pray and put are faith and trust in God...

Wonderful News!!

After getting reports of a recent CT scan, the mass in Jordan's chest is shrinking! The doctors strongly feel that the current mass in Jordan's chest is nothing less of scar tissue consisting of dead cells and will dissipate in time. The doctors tell me not to worry...that if their was something to worry about the mass would be getting bigger, its doing the opposite!!

The maintenance phase is scheduled to begin this Monday, starting off with getting admitted into the hospital with a spinal where more chemo will be administered. The most important procedure that day will be the port-a-cath finally being inserted into his chest. This means no more pic line! This will be start of the three year maintenance phase we have all been anticipating. It does involve chemo pills everyday that will last the entire time. This absolutely concerns me...I have no idea how he will respond to this as Jordan seems to be so sensitive to every type of treatment. The doctors assure me most kids can go back to school and play sports so I am expecting easier days ahead. The maintenance phase will also include chemo once a month through his port, spinals taps every three months, and steroids once a month.

Jordan's birthday was a success! There was a sea of red everywhere in honor of his favorite baseball team...the Angels, with a few exceptions of Dodger Blue roaming around! It was the most I've ever seen Jordan play since he's been diagnosed. It was a birthday well deserved by Jordan and he enjoyed every moment of it!

We've hit some huge milestones...the mass shrinking, the maintenance phase about to begin, and Jordan turning 10. I have to say again, I never thought I'd see these days...when you're going through the storm, brighter days seem so far away. My prayers will be that Jordan's counts will raise during this three year phase, allowing him to be a little boy again, going to school, playing with friends, and of course...playing baseball. I have to keep telling myself...God's got him in the palm of His hands and He will allow Jordan the desires of his heart.

Thank you for your continued support and prayers. They will still be needed as we embark on this new phase of Jordan's Journey...

Jordan's 10th Birthday!!

Today is Jordan's 10th Birthday! We will celebrate by having a family birthday party all decked out in his favorite baseball team...the Angels, asking that everyone wear their red Angel gear in honor of the party. When I think back to when he was a baby, I never imagined what a huge impact he would have on not only us as parents but to others as well. He's a feisty little kid but a fighter as well. I thank God everyday for allowing us to be blessed with him as our son and could not be more proud to plan such a special party especially considering what he's been through.

A recent CT scan was done on Monday of this week showing that the mass in his chest is still there and only a bit a smaller. The doctors are talking with surgeons to determine if it is OK to put a port in his chest at this time. I should know more after his doctor's appointment on Monday.

His second pic line became clogged earlier this week. The nurses tried to unclog it but were unsuccessful so they had to pull the line out. Jordan received his chemo on Monday through a regular IV. He is now doing well. I thought we were going to start the maintenance phase at the end of this month, but the doctors are now talking to the head of the T-cell Leukemia Board to determine if more chemo may be needed due to Jordan not receiving all of the chemo stated on the road map. There were times we had to call off therapy because Jordan was too sick and could not handle the chemo. We will know soon. They may want to give him a more aggressive chemo therapy. As soon as I know more details as to the doctor's plans, I will post an update.

Right now, we will enjoy his birthday!

Ups and Downs...

The last two weeks for the Macias family have been full of many ups and downs. Jordan has had two full weeks of chemo and was in and out of the hospital and doctors offices more than we would of liked.

As last reported, he started off with a short hospital stay after receiving many different chemos that continued all through the week of Christmas. It was a miracle that we were not in the hospital during Christmas Eve and on Christmas day. He had a really rough week of being super sick but Christmas Eve...something happened and the light returned back in his eyes, he took a few bites of food and the corky (probably excited for Christmas) attitude was back. Now I know what they mean when they say..."Christmas Miracle." We were all together and not separated! Jordan was then able to enjoy Christmas day with family and enjoy new gifts.

This last Monday it all started again with a spinal tap back in the hospital along with other chemos that were to continue through Thursday. We expected it to be an easier week on Jordan but as the week went on, he only got worse. After trying to get Jordan to feel better and stop throwing up at the doctors office on Thursday, it was then decided it was best to admit him into the hospital. The doctors then made another decision, because of Jordan's weakend condition, to not proceed with the chemo that was due on Thursday and to stop the chemo pills that should have continued up until this Sunday. I'm not too sure how I feel about this...they told us that they knew I would be anxious about this decision but assured us that Jordan would be OK without finishing these particular treatments. The doctors feel that what Jordan has received these past two weeks have been at high levels and have done their job.

With some hesitation...the doctors discharged Jordan on New Years Day, they know how much we hate being in there and always try their hardest to make us happy. In fact, one of his doctors, came back to the hospital specifically to see Jordan, at 10:30 New Years Eve night. She said she just had to see him again and didn't like the way she had left him earlier that day. We are truly blessed to have the doctors we have, you see them so much, they turn into family.

We are scheduled to proceed with some light dosages of chemo this Monday, but that will be determined by blood work and how Jordan is feeling. His weight is back down to under 60 lbs. They don't seem too worried and they feel that his appetite will come back once the hard chemo is done with.

I have to say a special Thank You to my sister Sherrie, for coming with us on those spinal tap days and bringing some laughter into our hospital room. Also, Thank You to Big Brother, Tristen for going with us these past two weeks, always having to be the one to fetch the wheelchair, be his driver and help him throw up while I'm driving. I know this wasn't the best way to spend his Christmas break but Jordan could not have a more sensitive, compassionate brother.

I've never been more ready to say, "Bye Bye 2009" and "Welcome 2010." The year 2009 was filled with way too many tears for my family. While I'm forever grateful for triumphs in this past year, I'm ready for a New Year filled with New Hope and New Promises.

Thank you to all of you for standing by our sides during what was the most difficult time we've ever had to endure. Thank You for your dedication and faithful prayers that go out to Jordan each and everyday. And Thank You Lord, for NEVER abandoning us...

A Short Hospital Stay...

Surprisingly and nothing short of prayers answered, Jordan was able to come home Tuesday morning after a heavy day of many different chemos given on Monday. He's definitely not feeling the greatest and feeling very sad because he is not able to do fun Christmas activities. We find it very hard consoling him at this time, he very much prefers to be out and about. This week started out with Jordan's spirits being wonderful considering what he was up against. Now, he's not so happy...you put not feeling well on top of that, and there's nothing but tears...it breaks your heart. We are due back Wednesday and Thursday for more chemo. He will also be taking chemo pills for the next two weeks.

I keep reminding him that the hard part of chemo will be over very soon and that easier days are just around the corner! I'm going to say it again, we never thought we'd see the day!!! Now, the challenging part will be getting through the holidays.

I want to add that this Christmas, we are not only blessed with the precious birth of Baby Jesus, but we are also blessed with the precious life of our dear Jordan. We are still are family of four strong and for that we will be forever grateful.

Thank you all for the continuous prayers in a battle that at times seems never ending. May you all be truly blessed this Christmas season!!

Chemo Will Begin...

On Thursday Jordan had a doctors appointment that verified the pneumonia is better and his counts are well enough to start the round of chemo that was delayed last week. This coming up Monday we will once again be admitted to the hospital for another spinal tap with chemo that will consist of four medicines. One of which will be given during the time of the spinal, two through his pic line and one in pill form. We will stay the entire day on Monday and that night for sure. It will then be determined the next morning, after another push of chemo, if we will be able to go home. That will only be if Jordan is not to sick and throwing up. Regardless, whether we go home on Tuesday or not, he is do back on Wednesday and Thursday as well, to receive more chemo. The same will be repeated the following week minus one of the heavier drugs, which should make it a bit easier for Jordan.In honor of Jordan going bald from chemo, Shawn decided to surprise us all and came home with a shaved head. What a great dad he is! He didn't want Jordan to feel alone. There's nothing he wouldn't do for his boys. We are so lucky to have him! Shawn lifts our spirits everyday helping us to remain positive.

This weekend Tristen has a baseball tournament that will keep us busy and keep our minds off of what next week may bring. Prayers will be needed for us...we hope the hospital stay will be short and that Jordan will not get too sick so that all four of us will be able to be together for what is one of the most important holidays...Jesus' Birthday!!

Jordan Is Home!!

Jordan came home Saturday and it couldn't have come soon enough! I don't know how we could have tolerated another day in there. The fevers finally stopped after he was put on a third antibiotic and the pneumonia that started in the left lung has since moved to the right lung but thankfully it is a mild case, so they gave us the pass out!

I can't even dig deep enough to find the words to describe the despair that our family endured staying in the hospital this pass week, it's something that the four of us just can't handle anymore. I'm sure it's due to what we experienced in the beginning with Jordan. Any time the four of us have to be separated now just seems unbearable. It is as if we've stopped living and time is standing still.

BUT, thankfully we serve a God that can turn a dark situation into a good one. Where there seems to be no hope, he can turn it around. Where fear may consume you, we can as hard as it may seem, no matter what our circumstance, turn our fear into FAITH by not looking at the situation but at the outcome. This week our joy was stripped away...and I say that truly for Shawn, Tristen, Jordan, and myself...so it will be my mission to find that joy again for our family. I am going to start in the book of Philippians in the bible, it's all about Joy, and start speaking life and happiness back into our family again.

I don't know when chemo will resume, we are do back for an evaluation and more blood work on Thursday, so I'm sure we will discuss the plans for chemo then. I'm thinking the following week but who knows, at least we get a break from anything heavy this week.
I'm so glad we took the opportunity and went to Knotts Berry Farm on the Sunday before Jordan was admitted. The hospital gave us tickets and we were able to go with my sister and brother in law, Gary and Sherrie, and with Jordan's cousins, Joshua and Natalee. Jordan had a blast, he was feeling great and went on every roller coaster and spin ride there was. He went on the Ghost-rider...three times!! Jordan is defiantly a thrill seeker and didn't even get sick once. Me...the second ride did me in and I was done for. I got so nauseous and sick, I had to take one of Jordan's pills he takes after chemo. My sister and I then decided to hang out at Camp Snoopy with my four year old niece and I couldn't even look at the rides, let alone ride one, but thanks to his pill, I was better towards the end of the day. I know crazy...right, I was the joke of the day and gave everyone a good laugh!

So...soon we will find that happiness again, just like the happiness we had at Knotts Berry Farm. It may take some time for us to bounce back, but we wont give up, even when the going gets tough. This is when I say...Thank you Lord for catching every tear and knowing when we can handle no more.

Chemo Postponed

No chemo for Jordan this week, it has been pushed back. Monday evening Jordan was admitted to the hospital for a fever that kept on raising. After listening to his lungs and doing a chest x ray, it has been determined that he has a mild case of pneumonia in the lower left lung. He was immediately started on two powerful antibiotics that cover a wide spectrum of bacteria infections and treats pneumonia. As of last night, the fevers have not let up and only break with Tylenol. He is not feeling sick nor showing any signs that would have been a red flag to us, only the fevers. We are also waiting on blood cultures that take up to 48 hours to determine if there are any bacteria infections in his body, for example a blood infection due to his pic line. Once nothing shows growth on the cultures for three days, we may be able to go home after another chest x ray is done proving the pneumonia is clearing, and if the fever stops. There are a number of reasons for the fever, it may even be viral that antibiotics can not help.

We are looking at the earliest possibility of coming home being Friday, and we are counting on that!! Shawn, Tristen, Jordan and myself are not ready for any hospital stays to say the least. We will keep you posted.

A Wonderful Thanksgiving!

This Thanksgiving our family genuinely had something to be grateful for, as you can imagine it was an emotional one, but with happy hearts. Jordan didn't even throw up once from his chemo the day before. I believe seeing family really brought his mind to a happy place, not to mention we were able to go on our annual trip to the desert with many other family members to ride. Jordan actually rode his quad and loved riding his cousins dirt bike. He did really well for a kid being hit with chemo, we were impressed. It brought back some normalcy in his eyes...there is life after leukemia!

The next round of chemo will be a day earlier than expected. Jordan is do back this Tuesday, he will be admitted to the hospital for a spinal tap and he will also receive 4 other chemo medicines. We will stay in the hospital, hopefully for a short while, depending on how Jordan responds. This is a heavy round that not only consists of medicine given through his pick line, but of taking chemo pills as well. After Tuesday, Jordan will pretty much receive chemo consistently up until approximately December 30Th. If everything goes according to schedule and there are no delays, the aggressive part of therapy could officially end at the end of December and once his counts raise back up, he can start the maintenance phase!

So many people have been commenting on how much of Jordan's hair has been growing back and how good it looks. Today however, we noticed it all over his shirt...they warned us it would start to fall out again. Thankfully, he seems not to care one bit. His weight is at the highest it has been since he was first diagnosed, he weights 63lbs! They continue to do blood work weekly and all seems to be coming back looking as well as can be expected. His spirits have been wonderful and we are seeing his goofy personality come back everyday. We do have some heavy rounds coming up in the next two weeks, so please remember us in your prayers, not only for Jordan but for his big brother Tristen, this takes a toll on him as well, especially with Christmas being so close and us having to be in the hospital and at the doctors so much.

On a much happier note, Jordan is almost done with the aggressive part and that's what we keep our eyes focused on...we never thought we'd see this day!