Thanksgiving Blessings

I can’t believe a month has already flown by since I last made a post. Things have defiantly been on the mend since the last time I made an update. Jordan has been doing pretty good, as always his counts are up and down which makes the dosage of his chemo pills constantly change. Sometimes this change is needed to allow his counts to recover and give his body a break.

We did have another scare with a fever that came on a couple of weeks ago that unfortunately landed us in the hospital for a short time but thankfully the fever went away and was just symptoms of the common cold. He is back in school now full time with tons of germs brewing all around him so this can be expected…of course we do all measures possible to avoid any bug.

Jordan is almost back up to 70 lbs, we are constantly trying to shove food and protein drinks down him any chance we get. His wonderful doctor, Dr. Horvath made arrangements for us to meet in Palm Springs with a nutritionist that specializes in patients undergoing chemo therapy…she had lots of helpful ideas for Jordan to gain weight along with putting him on some special supplements while going through the chemo, as we still have nearly 3 years left to go.

His hair started to grow back a few weeks ago and we are amazed how rapidly it’s coming in now. I absolutely love seeing hair on his head as it takes away from the “chemo look”. He finally was able to return back to practice with his baseball team, the Ruffryderz and was looking forward to playing only his second tournament with them this weekend but weather didn’t permit and it was rained out. Hopefully we will get a tournament in before Christmas so he can try to get back in the swing of things.

Tristen is a typical 12 year old and is constantly busy with either homework or baseball; he is currently playing with the 66ers and is preparing to get braces on this Tuesday…lucky him!

Shawn and I are doing well and just celebrated our 15 year anniversary! What many ups and downs we’ve had in these years but in the end love conquers all…even when life doesn’t seem fair at all. We are forever counting our blessings and at times don’t even need to say anything to one anther…only needing to glance at the other knowing what we’re thinking. There are many silent moments between us, enjoying the sight of Jordan...thriving, laughing, living life and under our breath, you can bet we’re thanking God for allowing him to be right here with us!

This Thanksgiving, I am grateful for the simple things in life…the four of us being under one roof, being able to sit at the dinner table together and doing things a normal family does such as watching a movie by the fire, it doesn’t take much to please us anymore.

I love these fall crisp cold days and love them even more as I share them with my sons and wonderful husband. I’m sure you are all embracing your families and making the most of every moment especially as the holidays approach. Continue to live life, smile, laugh and love…but most importantly don’t forget how Awesome and Wonderful our Heavenly Father is!!

Praising God!

What an answer to prayers! Jordan’s bone marrow test came back negative, no Leukemia cells were found. Thank you all for your continued prayers during this time for us!

Jordan was having similar signs of what could have been a relapse but it appears to of been side effects from his brain radiation. The doctors say this is about the time for him to start having some delayed reactions and the fevers were just leaked to a virus. Thankfully, the fevers stopped this past Tuesday. We have gradually started him back in school but he doesn’t last to long because he is just so weak and sleepy, we have him doing half days. Unfortunately he has lost 5 lbs, bringing him back down to 65 lbs. We encourage food every minute but his stomach has shrunk so much and his appetite is very little. We just have to be patient for that weight to come back on. His is still bald from loosing his hair back in August but you can see his hair starting grow now.

I was happy to hear that they felt it was best to postpone his spinal tap along with his chemo for about another month. They want him to recover from all the side effects of the radiation before they zap him with some more chemo. They might consider doing his monthly chemo next week; they will decide this at his next appointment. In the meantime, his counts are pretty good. His ANC level is around 1000...no where near the average child but acceptable for Jordan at this time.

Again, we are so relieved that his bone marrow is clear…the Leukemia still remains in remission! We rejoiced with tears of joy that day. We are in awe of God’s faithful promises and like my sister reminds me, the Lord will complete the work he has started in Jordan and never doubt the power of prayer!

Thank you Heavenly Father for your Mercy that endures forever!!

“For I know the plans I have for you”, says the Lord. “They are plans for good and not for disaster, to give you a future and a hope”. Jeremiah 29:11

Trying to Remain Positive

Hello Everyone. Just when you think all is well, something pops up to make you worry…

Last Saturday, Jordan started having fevers that we hoped would go away but they didn’t and we ended up in the hospital for 5 days. He had no other symptoms but fevers with chills, being very tired and no appetite at all…it all came on very quickly. They ran all routine blood tests for bacteria and fungal infections and even tried to determine what type of virus it may be. After being on heavy antibiotics, they felt it was safe enough to stop all antibiotics and just let whatever virus he had run its course. Thankfully, they agreed it was safe to come home on Thursday and have allowed us to give Tylenol for the fevers and just push as much food and liquids as possible.

To much of my surprise, they are still going to proceed with his spinal tap and chemo medicines (that he gets every 3 months) this Monday. The doctor says his counts look good and that it would be ok to do so. They are also going to do another bone marrow test the same day just to make sure the bone marrow is still clear. The last time he had his bone marrow checked was about a year ago. His bone marrow has never had any Leukemia cells in it, so our hope and prayers are that it has remained clean and clear of any unwanted Leukemia cells. Unfortunately, when I made a call to the Leukemia/Lymphoma Foundation and actually spoke with a specialist I found out that Jordan has some symptoms of a possible recurrence. This has thrown us in a panic and our hearts and minds are filled with worry and fear that at times are unbearable. We’re trying very hard to remain in tact for Tristen as we don’t want to weigh him down with too much worry for his brother.

Since Jordan has been home, he has been sleeping pretty much non stop, hardly eating and still running low grade fevers. He just looks sick, with droopy eyes and has a pale complexion, with really no life inside of him. Every once in awhile he will wake up to watch some playoff games of baseball and play a round of rummy with one of us.

We are trying to remain positive and put our complete trust in God that this is just a virus and eventually he will be over it, but it’s much easier to say than do. There’s no doubt in my mind that it has been all the prayers that have gotten Jordan this far, especially in the beginning when things seemed so hopeless. Now, we will continue those prayers and keep our hope and faith so that it will carry us through no matter what we find out from Monday’s tests results.

I pray for Gods Mighty Healing Power to work supernaturally in Jordan’s body right now and in this next week to come. I especially pray for peace of mind upon all of us as we wait for test results of the bone marrow. Please stand firm and stay in agreement with us as we continue to fight this battle for our precious son.

Hebrews 4:16 So let us come boldly to the throne of our Gracious God. There we will receive his mercy, and we will find grace to help us when we need it.

It’s Monday morning, 4:30 am and I have hardly slept. My mind has every emotion you can think of…

The first two weeks of school for Jordan went very well. He was welcomed with open arms. By the second week, Jordan developed a runny nose and cough but it never got bad enough for medicine, I just hoped and prayed it wouldn’t turn into anything more. But approaching our third week of school, a fever put us in the hospital for one day and one night. We returned to the clinic the next day for doses of antibiotics incase a bacteria infection was brewing. Thankfully, no bacteria showed up in his blood cultures and the fever was just related to a common cold.

His counts were very low for the second time in a month so he was put on independent study for the week. Again, all chemo pills were stopped to give his body time to rest and recover. As much as he wanted to be back in school, it was too risky to send him. We are due back tomorrow to check his blood work.

Unfortunately, his hair has come completely out due to the radiation. His teacher has compassionately agreed to let Jordan wear his baseball hat in class…loosing his hair again has not been easy for him.

He is doing fine now and will return to school Tuesday. His travel ball team has already started their season without him, competing in their first tournament this weekend. His coach tells us to get him healthy again so he can join the team… the radiation has taken more of a toll on him then ever imagined and going back to school has been a huge adjustment for him…so playing baseball may not even be in the cards right now.

Ever since radiation, the past few weeks have set me back a bit. I feel myself spiraling down with a ton of emotions getting the best of me. I guess you can say seeing Jordan with a bald head again is a constant reminder that yes, I have a child that’s fighting cancer (even though it’s already been beat and we’re just going through the process now).

Do you all remember when Jordan spoke at a fundraising dinner for the Cancer Society? He was asked by friends we met, whose daughter had Leukemia as a teenager and ended up having the same doctors as Jordan. Well, it is with great regret to have just found out the cancer is back and she is now in need of a bone marrow transplant along with even more aggressive chemo therapy than before. Her name is Raeleen, she just tuned 20 and had just started her first week of school at Cal Baptism at the time of her relapse. She is an absolute beautiful young girl who now has to once again put her life and hopes on hold.

This news has set me back and I am completely devastated. I feel the pain of that family and her mother’s….I know exactly the despair and heartache they must be feeling as they walk those halls of Loma Linda. Thankfully, they are a family full of faith and completely trusting that God will see them through once again. I can only imagine what Raeleen may be feeling. I pray she has the fight left in her and that God will give her the strength she needs to endure a very difficult road. She and her family need prayers around the clock right now.

I know I usually leave off with something encouraging but I don’t have it in me. I am sick physically and mentally right now. I am trying very hard to cast all negative thoughts down and surrender all to God so I can be the mother and a wife I was called to be…it’s a lot easier to say then do when you’re in a world of hurt.  This news with Raeleen has been the last thing I needed to hear. She gave our family hope. I guess for now I’ll take the advice of her mom, written from their blog, to take one day at a time…

My Little Hero!

Hello all…I’m more than thrilled to announce that Jordan is done with radiation! We actually started it a week later then anticipated because of his counts being too low. But, oh how happy we are that his last treatment was this past Wednesday!

Last Sunday afternoon, when we got home from camping up in the mountains (to get a quick getaway in before school started and to give Jordan a change of scenery other than the radiation rooms at Kaiser), I read a wonderful comment made by Keri on the blog. She shared her story of her daughter that was diagnosed with T-Cell Leukemia almost 20 years ago and now how she’s being released from the care of her oncologist!

First off, I couldn’t even get through the first few sentences without crying. This comment meant so much to me in many ways. This is the first person who I have EVER came into contact with who’s child had T-Cell and to know she’s been a survivor for so long and is now being released from doctor’s care, was just what I needed to hear! So CONGRATULATIONS Keri on hearing those words that I’m sure you’ve longed to hear for so long. Your comment was a great encouragement to me and the rest of my family…including Jordan! Reading comments like this, reminds me that yes…I need to continue doing this blog!

Unfortunatly…the radiation did not go as smoothly as we thought it would. It was much more on Jordan then we ever anticipated…physically and mentally. He started feeling nauseous almost right from the beginning which brought back a whole flood of emotions for me. It brought back the times of undergoing the aggressive chemo and I caught myself questioning our judgment of even doing this radiation. I felt like I was torturing him all over again and not helping him. But when I read the comment from Keri and she said that not getting the radiation was not an option, I realized (with the help of Shawn and others) that it was indeed needed.

Thankfully, we only had to do it for eight days but I could definitely see the fear in Jordan’s face every time we went. It broke my heart seeing them lock the mask on his face each time and on several occasions when we would go back into his room to get him, he had tears that filled his mask. For a 10 year old this was traumatic (gosh, for an adult it would be traumatic). But by Gods strength he gave him each day to go in and do this, he overcame yet another phase in this journey with flying colors and now Jordan in my eyes will always be my “Little Hero”! There’s no other word to describe it other than this!

Unfortunately today, his hair has started to fall out. They warned us of this, but doctors are hopeful it will just thin and not completely fall out due to the amount of radiation he received. I pray that this is true.

On a much happier note, we’ve hit another milestone in Jordan’s Journey. He officially started back to school and is now a big 5th grader! We were a little concerned if he could even finish the first week due do the radiation making him sick but thanks to the nauseous medicine and his determination to be a normal child again, he made it! We are completely blessed to have him at Calimesa Elementary School! Everyone there is wonderful, caring, and nurturing towards Jordan. They are all so happy he’s back!! He has a wonderful teacher (Mrs. Peterson) who is a Christian and texts me bible verses every morning, I love it! (This is great because I need all the encouragement I can get). They really made a week I thought was going to be very difficult quite easy. Tristen also got off to a great start at middle school! This week has been quite a transition for all of us, but in a good way!

A lot of people are asking me if Jordan is still getting chemo. The answer is yes, we have 3 years of maintenance chemo left. This consists of chemo pills daily, chemo in his port once a month which follows with 5 days of steroid pills, and every 3 months we are due in the hospital for spinal taps (along with chemo in his spine on those days).

So… as you see, the road is far from over but it has already begun as well…Jordan’s health is being restored and now Jordan will continue to be strengthen by God’s healing power which brings us the peace we need to fight and to overcome this. When he’s down, I always tell him one of my favorite verses…Phil. 4:13, For I can do ALL things through Christ Jesus who strengthens me.

And so can you…

SWEET VICTORY!

Hello All! My how time flies when you’re having fun! Summer has sure kept us busy! The days are just flying by. I can’t believe before we know it, the boys will be back in school and yes Jordan is returning and starting the 5th grade and Tristen will be starting middle school.

We actually just got back from vacation at the river, filled with family, fun and lots of laughter. Jordan made up for missing this trip last year and had tons of fun on the boat, tubing and bonding with cousins!

We finally ended the All Star season towards the end of July and ended it with a BANG for Jordan’s team! They did wonderful and had an awesome time! Shawn coached and had an amazing group of kids that won their district title! They were the only team in our division to do so. The team went on after that to represent our district in Sectionals but was eliminated after loosing two games. I thought the boys would be upset but really it seemed they were all relieved and ready to start their summer vacation. None the less…they have so much to be proud of after such a huge accomplishment winning their district! I caught myself tearing up the last game they played as I sat there watching Jordan play...thinking what a SWEET VICTORY it was that he was playing at All Star level! Last season, Jordan had to deal with the fact that only his brother could play wishing he had the strength to play himself. Again…another milestone! Who would have thought Jordan would be where he’s at today! God is so good and has answered all our prayers!

I now have to have the confidence that God will carry us through this next journey in Jordan’s life. I last mentioned we had a consultation in Hollywood to discuss the Cranium Radiation that Jordan is due to get. We actually start this radiation in Ontario on August 4th for 8 days. This is a preventative treatment as T-Cell Leukemia can tend to come back in the brain. The odds of this coming back if we don’t do this treatment is extremely high, so of course we want to do what’s in the best interest to prevent this from coming back. One good thing they tell us is the dose of radiation has significantly lowered in the past few years. So that means fewer risks in side effects.

We had to go in for them to make a mask that molds to his face for treatment in order to help his head from moving during the radiation. The mask will lock down to a bed Jordan is laying on to prevent any movement in his head so the radiation can go only to his brain. They say each treatment should be done within 5 minutes.

To be honest, I really can’t think much about this because fear instantly sets in. As a mother I’m constantly worrying, this whole thing makes me a big ball of nerves. My faith’s for sure going to be tested during this time. I know we’re not the only family battling such illnesses as this, so when I feel this worry come on, I start to pray for all who are battling for their loved ones. My heart aches when I think of what people all around are going through, I do know now first hand we’re not the only ones. With that being said, please join me and my family in prayer as yet another phase in Jordan’s Journey is about to begin. Jordan will need peace of mind as radiation begins in his brain. Also pray for strength in his body and for protection so NO side effects will affect him now and in the years to come.

For I know God has a plan in his life and this is just a small bump in the road to complete recovery and restoration in the innocent life of our child.

Thank you and God's Blessing to all of you and your families!

Living Life

I know it’s been quite some time since I’ve written, but life lately has been extremely busy consisting of baseball, weddings, graduations and then…more baseball! I have found myself saying a lot lately, “That’s ok because we’re living life and a year ago, we weren’t living life”!

Since I last wrote Jordan has spoke at a fundraising dinner for the American Cancer Society and spoke like a pro! His doctor even attended and spoke, she expressed how pleased she was with Jordan’s recovery and talked about how depleted he was when she first saw him. He amazed everyone at the dinner (including us) with his poise as he shared his story and how money raised is so important for research. How important you learn these things are, when it happens to you.

We’ve been to Bakersfield for his cousin graduation, had my niece’s wedding, ended our home school journey with Jordan’s wonderful teacher, attended Tristen’s graduation ceremony for completing the 6th grade and moving on up to middle school, and have attended many baseball games between both boys.

Baseball season with Little League is officially over but I must say…Tristen and Shawn’s team definitely ended on a high note! They had an amazing team who finished 1st place in the regular season with an outstanding 17 wins and only 1 lost. They ended the season with a tournament where they placed 1st and received trophies for both! How very proud I am of them both! What an accomplishment!

Jordan’s team did well, finishing the season in 4th place of 9 teams and ended up in 3rd for the tournament. It was an accomplishment in its self that he even played and did so well! (It was purely his determination because I know his body still has a lot of strength and weight to gain). Which by the way…he finally weights 70 lbs.

Both boys made it for All Stars! Shawn has chosen to coach Jordan’s team. Jordan will be on the 10 year old team and their tournament will take place in Yucaipa and Tristen will be on the 11 year old team, playing his tournament in Yucca Valley. So practices with their new teammates are full steam ahead.

Jordan is due to get “Cranium Radiation” as a preventative treatment for T-cell Leukemia. We have a consultation coming up this Tuesday in Hollywood to discuss and make plans for treatment. I haven’t made mention of this yet because I just wasn’t ready to deal with it and wanted to focus on and enjoy the baseball season. Like the chemo did, the whole radiation thing makes me ill! But we know it’s needed to help keep this sick disease away. I don’t know how he will respond, I don’t know side effects or when this will even take place. All I know is the focus of prayer will need to be to get us through! Jordan especially!

On Jordan’s one year anniversary (May 26th) since his diagnosis, to celebrate we let orange (the leukemia color) balloons go with all his teammates in honor of everyone who has had to fight and endure this type of cancer. After, Jordan wanted Sushi…so we went, which he claims will now be our tradition.

With it being one year, everything takes me back where we were exactly a year ago and emotions take me all over the place. I have found myself doing a lot of reminiscing about long hospital stays, the images of Jordan being on life support, the day he coded and they prepared us for brain damage, Tristen not being able to finish his school year, Jordan learning how to walk, talk and eat again…the list goes on. I think about how a lot of people’s life stopped that day because ours did and really I don’t know how we made it through.

I appreciate the small things in life now, for instance just falling asleep in my own bed, and knowing we are all under the same roof. I appreciate the love and support from family and friends who never left our sides when the only thing that surrounded us seemed to be more and more bad news of despair. Really…we felt our life was over but thanks to our Heavenly Father he had different plans!

I now can share our story of success and how MIRACLES can happen! As a mother, I hope I can be an example to others. Our hearts are always going to be heavy and worry for our children but it’s our job to never let up on our constant battle for them, especially in prayer.

I’ve seen Shawn be the true example of a father whose strength stood strong for his family when we needed him most. I’m in awe of what a large burden he had to carry when all odds seemed against him, when I was so weak and couldn’t even make a decision, he was right there being the backbone of our family, lifting us up, NEVER giving up.

I’ve seen Tristen be a devoted brother that was in his bible daily, praying and crying himself to sleep every night for his brother that he wanted to see come home so badly. And because of our trust and faith in God it happened!

Thank you again for your continued support through prayer and encouragement as we are not done yet, we still are in battle everyday especially with this radiation coming up.

I’ll keep you posted as Jordan’s Journey continues…

Hello All…Jordan is doing really good, baseball is keeping him busy and bringing normalcy back in his life again, which we all welcome! All chemo treatments in and out of the hospital have been going well and his ANC level is currently at 1400.

He is still being home schooled by his wonderful teacher, Patti Smith. When he’s not in school or at baseball, Jordan loves watching every baseball game on the sports channel (yes, even the repeats) and Full House.

Mother’s Day was wonderful because I got to spend it with both of my boys and not just one. I got very emotional that morning…Shawn made me a beautiful breakfast and I got to enjoy it with my WHOLE ENTIRE FAMILY! It’s the small things in life that please me now.

We’ve all been super busy with baseball of course (and yes, Jordan’s passion is still full steam ahead)…which takes up most of our time. There is also a wedding for my niece, Jamie coming up on June 5th and we have a graduation for my other niece, Jessica who lives in Bakersfield (Jordan is super close to her). With all these family events, we wouldn’t have it any other way! This is what life is all about and it sure beats worrying about hospital stays and if Jordan will be super sick from the hard chemo and us not being able to enjoy such events as this!

I’m so happy for Tristen’s baseball team and Shawn as well (who is the manager)…they are having a GREAT season! I thought there for a while that they would go undefeated but they finally had their 1st lost on game 13. They all handled it very well and didn’t even hang their heads much which pleased me because really…they’ve had an awesome season. The regular season will be over at the end of May and end off with a tournament.

Jordan’s team is doing well. They’ve had some loses but still are ranked middle of the pack. He’s pretty much come to terms that he’s on a Dodger team and not the Angles.

Tonight Jordan is speaking at a fundraising dinner where all proceeds will go to the American Cancer Society. This will be a first for us but now is so near and dear to our hearts.

With the year anniversary of Jordan’s diagnosis coming up at the end of this month, we’ve been going back to where we were a year ago. Little did we know what was around the corner…how thankful we are to say the least! I will share more thoughts about this at it draws near. My thoughts have been all over the place…

All I know is…I’m so happy we serve a God that is bigger than any obstacle, circumstance, or sickness that may come our way!

Well…it’s been quite a while since the last update, guess you can say we’ve been super busy. Yes with baseball, which is always a treat but more so, we’ve been busy with the boys being sick! I actually can’t believe it!

Last Monday night through Tuesday we were in the hospital for Jordan because he had a crazy cough with a fever. A chest x-ray revealed it was bronchitis, thankfully a mild case. With his counts being pretty good and considering he’s on a lighter chemo now, they didn’t make us stay too long. The doctors know we despise being there! We came home on some antibiotics and Jordan is doing much better!

Tristen, on the other hand, well…he’s a different story. He finally recovered after two long weeks from that horrid bacteria infection but it did take some time for him to bounce back and to put some weight on and for him to not look so green in the gills. He finally was able to start the baseball season with his team and is having a wonderful start to the season. BUT, last week he woke up with a fever, sore throat, and a stuffy nose! I can’t believe it…the kid was just sick!! So, we have him at Grandma Judy’s to keep any germs away from Jordan (who is recovering from the bronchitis) and hope whatever Tristen has is over much sooner than the last sickness he had just a few weeks ago!

Needless to say, we are very frustrated and just don’t get it! We take every precaution necessary for the boys and us to not get any germs. I find myself saying lately, “When are we going to catch a break!?” But then instantly, I tell myself, we did catch that break…my son is here and the Leukemia is gone! Then I go right into counting my blessings. Not a lot of parents are able to say that when their kids have been so seriously sick. So I thank God for what we do have rather than focusing on the inconvenience we are experiencing for that moment. I must say though…I would so love a break from sickness right now! We’ve had enough!!

Jordan was due to have his spinal tap Monday, (the spinal will be every three months on the maintenance phase) but they are postponing it for a week and stopping all chemo pills until he fully recovers from the bronchitis. Which is fine by me, it puts off another hospital stay! On a much happier note, Jordan’s friend, Jared and his family blessed us with Angel tickets a couple of Fridays ago. The four of us were able to go together and really enjoyed ourselves. The seats were really good…field level and right up the first base line. Tristen and Jordan even made an Angles sign hoping it would bring them good luck but…they didn’t win.

Their Friday night firework show was pretty cool. During the fireworks they played many songs and one of them was their theme song for the Angels which is, “Calling All Angels” by Train and ironically we have that same song on the blog as one of Jordan’s theme songs…when it played, I got a huge lump in my throat and got totally choked up as I sat their next to Jordan watching the fireworks. Thankfully, the lights were out and no one saw me tearing up! It was a wonderful night none the less, so thank you Wagner Family for a fun evening!! We really appreciate it! Jordan also got to use a gift card in the store and bought some fun stuff to finish decorating his room in Angel’s Baseball.

All in all, Jordan is pretty good. He’s playing baseball (with the same passion, sometimes too much passion), gaining weight (slowly but surely) and his hair is coming in beautifully (maybe even a tad lighter). I really couldn’t ask for more. Today, he was talking and joking with me in the car and it brought me back to the old Jordan that I remember. I love it!

I want to end with…I’m so completely taken by how Awesome our Heavenly Father is and how he knows exactly what we need! Even though we go through trials and tribulations, His Grace is more than enough and he will get us through each day!

Hello All…Jordan is doing so well! His first game was last Saturday and it was also Opening Ceremonies. A pretty special Opening Day Ceremonies!!

Shawn and Jordan got to get up and speak to the crowd, thanking them for supporting us during this difficult journey. Shawn gave a brief rundown of what we’ve endured during these last 10 months. There were many excited cheers for Jordan being on the field as he stood there next to his dad. It was quit emotional. Jordan, himself couldn’t even hold back the tears when his dad announced that Jordan would actually be playing a game that day. Jordan got to thank everyone for their prayers, stating that it was because of all the prayers that he was standing there at that moment. So many people came up to us expressing their joy for Jordan and our family that day. But someone really stuck out in Shawn’s mind and that was an ICU nurse from Loma Linda that actually took care of Jordan at his worse when he was on life support. She was so full of emotion she could hardly talk. Shawn said tears were just rolling down her face and she kept saying, “It’s a Miracle, he looks so good”! She couldn’t wait to go back and tell everyone she works with about Jordan doing so great. I didn’t get to meet her on Saturday and hope Shawn can point her out to me so I can personally thank her for taking such good care of my son. I’m so appreciative to each and every nurse that spent their 12 hour back breaking shift taking care of Jordan!
Jordan did awesome at his game! He played short stop, 1st base and pitcher. When he pitched, it was the last inning…he came in and closed the game. I got so nervous for him, I gave myself heartburn! But there was no need for me to worry. He came in and struck 3 batters out with no runs scored! He did wonderfully!! Shawn got to help coach and it was a great game! It was such a gratifying moment for Shawn and me! Not to mention, many fans came out to support Jordan that day!

Unfortunately, Tristen was still super sick the day of all this. He was unable to attend Opening Ceremonies, Jordan’s first game, and even his own game. He was very upset and sad that he had to miss this…he knew what a big deal it was for Jordan.

Tristen is still sick and having a real tough time with a stomach flu that has turned into a bacterial infection. As of right now, we are on day 11 of him being sick; he has lost weight and has not returned to school. We were at the doctors on Wednesday, Friday, and Sunday of last week. They wanted to admit him into the hospital for observation on Friday but thankfully no beds were available. So an IV was started for dehydration at the doctor’s office. They have done many tests on him including lots of blood work and have determined by his white blood count that there is definitely an infection brewing. He tested negative for parasites and E coli, along with many other sicknesses. It has been very frustrating for all of us and I have to agree with my friend that made the comment, we need a “Free pass card from sickness for a year”! But…I just count my blessing and hope and pray that tomorrow will be a new day and soon this sickness with Tristen will be behind us. Prayers sent for Tristen are needed at this time; he’s getting weary and doesn’t understand why he has been sick for so long. I don’t blame the poor kid, he’s already seen so much with Jordan and now he’s deathly afraid of anything having to do with doctors.

When things like this happen I just put my trust in God and surrender all to him. I place my children at the feet of Jesus, knowing he can handle more than us. I always say…when we are weak, he is Strong!

Gods Blessing to you all on this very special holiday…Easter!

Baseball Begins…

Hello All and Thank You for continuing to follow Jordan Journey’s. I want to make mention that we love reading all your comments and are so appreciative for all the encouraging words, so please keep them coming, it helps in more ways than you know!

Yesterday, Jordan had his monthly chemo at the doctor’s office and I’m proud to announce he weights 65 lbs. His counts are at a pretty good level, for those of you who know what an ANC level is, it is at 1685. They tell me anything over 1000 means he still has some fighting cells left in him to fight off infections. I’m pretty sure his counts should stay around this number throughout the maintenance phase, but anything’s possible and they could change at any moment. His counts are still nowhere near where the normal child should be at so we will keep a watchful eye on him, of course.

He still is on a hospital home-school program and I must say, he’s very anxious to be back in school but his teacher, myself, and his dad have other thoughts as far as that is concerned. We’re all thinking for sure next school year, but if Jordan had it his way…it would be now.

Jordan is still very excited to be playing ball and has not missed a practice yet. His first game is this Saturday, he’s so eager, he can taste it!! It brings tears to my eyes just thinking about it! He’s come such a long way since that dreaded day back in May. To think…he’s a kid that had to learn to walk, hold his head up, talk, and learn to swallow again and now…he’s playing baseball (which he’s pretty good at)! It’s a dream come true!! I’m constantly thanking my lucky stars!

Sadly his big bro, Tristen has been so sick with the stomach flu since last Friday which means he’s had to miss out on a couple scrimmage games this week. Tristen’s first game is this Saturday as well, we really hope his strength is up by than so he can start the season. Plus, it’s just not the same for Shawn when he’s coaching and his son’s not there. Thankfully, none of us have come down with it. Jordan’s been a little bummed because his Christmas break was ruined because of all the aggressive chemo he was on at the time and he was really looking forward to an eventful spring break but with Tristen being sick, it’s put a bit of a damper on things.

In any event, we are delighted with where things stand with Jordan and are so excited to be hitting another milestone with him being able to play baseball again.

God is good and He hears our prayers! Thank you Lord for shinning your light on us…

Happier Days...

Greetings to all! Jordan is doing great on the maintenance phase! This has been the break we have all been waiting for! I know now what they meant when they said, “hang in there, things are so much easier on the maintenance phase.” Jordan appears to be getting stronger and stronger each day. Although his weight is not coming on as fast as we would like, due to him being more active I think it’s slowing the process down.

We recently had the pleasure of taking family photos up in Crestline. The pictures say so many words, with much meaning behind our smiles. They represent enduring and suffering while on a rather difficult road that at times seemed unimaginable, but at the same time our smiles represent where great will and determination can lead you. I don’t think I’ve ever been more proud to take a family picture as I was on this day.

I am so excited to tell you all that Jordan got the green light from his doctors to play ball! He actually went to his first practice on Tuesday and he could not have been more thrilled! He anticipated it all day and hoped so bad that it would not get rained out. When it was finally time to leave, Tristen and I were first in the car waiting on Jordan and when he finally jumped in, he had the hugest smile on his face and proudly announced, “I’M GOING TO PRACTICE!” and when he went, you wouldn’t even of noticed that he had been so sick (with the exception of his running, he needs a bit more muscle to get where he was). But nevertheless, he seems to be the baseball player that we all remember.

I found it fitting on that day as we drove to the field to pray with the boys, just thanking God to allow this moment for Jordan and for allowing Jordan to be thriving and living life again...what an answer to our prayers! That day brought such satisfaction to us and Jordan finally seemed like a normal 10 year old again.

Our Pastor always says our life's are like seasons…just like we have fall, winter, spring, and summer…we’re going to have those different seasons in our own personal lives and those seasons will eventually end, giving us something new to focus on. Unfortunately, some seasons seem longer than others but let me tell you my friends…our family is well on its way of starting another season, one that is so needed with nothing but great expectations to come.

Thanks to all of you that follow Jordan’s Journey, may it be an example of determination, strength, and will to keep fighting the good fight…

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...