Looking forward to good things!

On Saturday I had the pleasure of meeting a young man who is about to go to transplant after only 8 weeks of treatment. My heart is heavy for this family, however it is an inspiration to see a great fighter in Justin. He is determined to beat this and live life to the fullest. Good luck Justin we are praying for a full recovery!

On Sunday we were part of The Leukemia and Lymphoma Society's Light the Night Walk in The Woodlands. It was awesome to see so much support all over again. The same generous and genuine support that we received during the most difficult 3 years of our lives.

There were so many things we learned through Tynan's journey, and as difficult as it still is today, We learned that sometimes winning means accepting God's will, to be free of the pain here on earth. We feel that we were blessed with the miracle of TIME.

We have always felt the want, to pay it forward and now we will continue Tynan's Crusade with a foundation determined to help terminally ill kids, just like Tynan, smile through the pain and disappointment. We will dedicate our efforts on helping families make memories and enjoy the time God has given them.

It's a small world

We met Tori through Sykora; Tori knew Amy and Lenora; Lenora donated a "girls weekend" for auction that was won by Norma, Veronica, and Sue. The girls could not make it and kindly gave Chapa and I the weekend. So this weekend we went to Burton Tx and ventured to Round Top for the 45th annual Antique Show. There was not one shop we went in to that we didn't say, "if mijo was here, we'd be leaving with that." i could just imagine going home with the bed of the truck full of saddles and huge life size metal horses. We may have spoiled him a little in his last 3 years of life, BUT there is NOTHING we'd do different.

While we were there we met a gentleman who saw our Tynan's Crusade T-shirts and wanted to know if we were from Tynan. He ended up being from Falfurrias, Tx close to my hometown of Premont. Just a couple shops later we met Phyllis, who was attracted to the T-shirt as well. She was from Tynan, Tx. Wow!!! Then she questioned why we said "was our son." She too lost a child, a fighter, an angel of God and she reminded me how lucky and blessed we were to have been chosen as their mama's.
Her daughter Melissa had Hodgkin's Lymphoma, went through 2 bone marrow transplants and beat the cancer. She endured all her treatment while attending college and graduated top of her class. She later had complications as a result of the chemo and radiation she had been exposed to. RIP Melissa.
It is so heart warming to have these random encounters with strangers. I feel as if it is Tynan letting me know and reassuring me that Tynan's Crusade will succeed and that with him giving us the strength we need, we will help those families who will endure the hurt, and emptiness that we feel on a daily basis.
We ended our weekend visiting Tynan's favorite vacation spot and saying hello to some great friends.
Thank you to everyone who made this weekend special. God Bless

Tynan Tough

Wanted to thank everyone who joined us; not only at Black Elementary; but all around; in wishing Tynan a happy birthday!!!! We will be donating $100 to our Leukemia an Lymphoma Society's Light the Night Walk!!!! Go Team "Tynan's Crusade"

Also want to let everyone know that the Tynan Tough stickers are here!!! We will be in Premont this weekend and will take some with us. The small sticker is $2.00 and measures about 2 1/4 x 3 3/4. The large stickers are about 4 x 6 and are $4.00. We also have patches and those are $10.
This is the last of the patches. These will not be re-ordered.

Be sure to message me if you are interested in a sticker or a patch.

Thank you Crusaders for all your love, support, and prayers! God Bless!

Almost 6

On Tuesday, September 18th we will remember Tynan and celebrate his 6th birthday with Cale and a balloon release, from the Black Elementary playground. Everyone is welcome to come sing Happy Birthday! Balloons will be released at 7pm.

Thank you all for the continued support and prayers.

Sykora continues to amaze us.

Today we were back at Texas Childrens Hospital with Sykora. Not for medical reasons, but instead, so that she could be honored for entering an art piece in The Periwinkle Foundation's Making a Mark art project.  There were over 350 art pieces and she was 1 of about 20 that were chosen for the Purple Ribbon Award.  This is her 2nd year to receive the Purple Ribbon.  We are very proud of her.

In the last 2 weeks of school, she has only had one "break down" that we know of.  We are very fortunate to have teachers at Black Elementary who can empathize with what she must be feeling and are willing to help her vocalize her feelings at that moment or allow her to just hurt at that moment.  She has expressed some feelings around others, but still hesitates to "feel" when she is home with us. 

She has initiated a "healing step" for all three of us in which we are to write a note to Tynan, when we need to talk to him; to tell him we love him, miss him, or just to share a thought of that day; and then place the note in his urn, "so he can read it."  Call me crazy but, I think she deals with things almost better than we adults do. She continues to be our source of inspiration, and strength. God Bless her.

She is...............TYNAN TOUGH!!!!

Seems like Yesterday

Today marks one month since Tynan's passing and it still hurts the same. People always say that it will get better but they don't usually say it has to get worse before it gets better. Our hearts are still empty and our eyes still fill up with tears just to think what could have been. But each day we do our best to hide our sorrow and put on a smile in our faces.

Our fears are for our daughter. Does she completely understand; does she really grasp all of this, and will we be there when she falls. For now we deal with it as most would do; one day at a time. We try to keep her distracted and busy.

We were given tickets to the PBR show in San Antonio long before Tynan left us; and so many people worked in making it all about him. He was to be the star that night or at least feel like it. When we lost Tynan, we had thought that we would not go without him; however Sykora changed all of that, and we couldn't be happier with how San Antonio turned out. Only God could plan it that well. We did not know that Fabiano would be dedicating his weekend to our Cowboy Angel. Nor did we know that most of the cowboys that night would be wearing a sticker on their vests that read "Tynan Tough" We only knew that we were going to meet him in person. We didn't even have tickets for Friday night ti about 3pm that day. While we sat in the crowd my brother received a text message that said something like....they are talking about Tynan on TV. I couldn't stop shaking. My emotions were all over the place. And never did we expect to have been put on live TV the very next day. I know in my heart without a doubt that my little man rode with Fabiano that night. That was his dream and that night he made his Gold Buckle Ride.

Thanks to each and everyone that made San Antonio a night we will never forget. We Love You ALL!

For those of you following our blog, we will continue to post updates on Sykora, and for upcoming Tynan's Crusade events. Thank you for following us through Tynan's battle and beyond!!!!

Thank You

We wanted to take a minute to thank you all for the continued support and prayers through some of the toughest days. It is so heart warming to see the many family members and friends that came to the services; It shows us just how much he was loved and how he touched each and everyone of you in his own way.

Funeral Arrangements

Sorry we had not shared these last two from Tynan's Crusade FB page.

Funeral services are as follows:

Viewing and Rosary
August 2, 2012 (6pm-9pm)
Rosary 7:00pm
The Church Without Walls
5725 Queenston Blvd
Houston, TX 77084

Funeral Mass
August 3, 2012 (10:30am)
Christ The Redeemer Catholic Church
11507 Huffmeister Rd.
Houston, TX 77065

There will be no graveside service.

Note from Tynan

I am now an Angel! Lane wanted me to have my own day so came for me a little early & took me at 11:14 p.m., July 29th. Thank you for all the love & support you have given me and my family! Love Tynan

Waiting on Lane

At the beginning of this year when our hopes had been shattered we talked to Tynan about going to heaven. He asked, "will Jesus come get me?" and he expressed his wish for his hero, Lane Frost to come get him, or maybe for Lane, John Wayne and Chris Ledoux, to come get him. We have been in pins and needles for almost 2 weeks and have watched him go through some rough times in this short time. All of our immediate family has come to see him, as well as many relatives and dear friends. We've listened to him plead for Jesus to take the pain away when he is in discomfort and can not rest. He is hanging on longer than his numbers say he should and in the back of my mind I wondered, what are you waiting for? Today I am reminded that Tynan's hero, Lane Frost will be celebrating 23 years with Jesus tomorrow. Though they never met, Tynan wanted "to be just like Lane." Though we will never be ready to say good bye, I can't think of a better way of knowing that he may finally meet his hero, and knowing that while God may not answer my prayer for a miracle he just might answer Tynan's prayer, and that's good enough for me.

Waiting for Jesus

Though we are still getting moments of cherished memories Tuesday evening we were told that we would probably only have days with our little Cowboy.  There will be no more blood given and his potassium and calcium levels are both at levels that could cause his heart to stop.  His pain medicine started out at 5 mcg and is currently at 75 mcg and we can still give him added help (50 mcg) with the bolus of pain meds.  He is in a lot of pain and discomfort from his sac as the swelling has increased and a lot of itching on his bottom.  He gets very frustrated as he has frequent urges to urinate but is rarely able to produce.  Mom still gets in trouble frequently as she is the scapegoat for all that goes wrong but is the first person he wants to comfort him.

Our best hope is that they can get the pain and discomfort under control and he will go quietly in his sleep.

Thank you all for the continued show of support and prayers.

Update - Ups and downs

Well we are still in the hospital and our little cowboy is in a lot of stomach pain and very nauseated.  Last night he made the comment “I can’t get any rest”.  They tried to add Adavan to his medicines but that made him so dizzy he could barely stand on his own and up till now he insists on getting himself up and down when he feels the urge to go to the bathroom (some urges do not process anything).  He is urinating some but not normal amounts.  Sunday night he vomited old and new blood and they are not sure exactly why just that he has a blood leak somewhere internal. He has been pretty swollen and what they originally thought was fluid built up in his sac they now believe is the infection from the abscess on his colon spreading.  One of the antibiotics he was on for this bacterial infection stopped working after just a few days so they brought in Infectious Disease doctors and have started him on a new antibiotic.  Because of his delicate state they are limited to what they can administer and do for/to him.  Typically they would go in and try and drain the sores/fluid but in Tynan’s case they cannot so he has to just endure the pain/discomfort caused.

He has been more alert the last few days but is in a lot of pain and discomfort. He sips on drinks when he’s awake and we can get him to and he requested and was able to eat some fruit yesterday so he finally got some food after over a week.  Unfortunately, because of the fungus infection still present they cannot give him intravenous nutrition as they said that would feed the infection and make it spread faster.

His blood pressure is again fluctuating and they want to put a patch back on him for this to keep it down – we however have mixed feelings about this because of the low blood pressures he experienced last week.

He will get platelets today.  And we were just told that his potassium is so low that it could cause his heart to stop and the only way to correct that is to push fluids and they can not do that because he will retain fluids and the fluids can get in his lungs and be very painful. 

He is still on this ride and is not giving up.

Thank you all for the continued show of support and prayers.

Overdue Update

Update and happenings of the last few days sorry we haven’t been able to update this daily.  Tynan’s blood pressure has come back up and has been in the normal range for a couple of days.   Wednesday he was finally able to urinate after 3 days but even rejoicing of that small step it was a terrible night as his little bottom is really bad with sores and the abscess that are very painful.  It hurts so bad that he would try to get on the couch and it would take 5 minutes to just put his butt on the couch from the time he started crawling up on it and then he'd say “wait, wait, wait just a minute hold on just let me do this” and then we heard “oh my gosh Jesus please help me”.  He was so miserable and the numbing cream was not working and we pushed the pain medication button every 10 minutes and then some and it just wasn’t helping.  They believe the abscess he has is pushing on his colon making him feel like he has to go to the bathroom but there isn’t anything to come out.  The doctors say they have no hope that they will be able to get this infection under control and they expect it to only get worse, which means more pain and suffering.

The amount of pain medication was doubled on his continuous drip Wednesday, as was the bolus amount they allow when we push the button.  Thursday the docs thought his liver was starting to shut down but his blood work shows that it's not as bad as it looks but that there are signs of stress to the liver showing that the disease is progressing. He is retaining some fluids and today the docs said it sounds like there is some fluid in lungs.  His blast count is showing 91.0% and 0 ANC, his white blood count (WBC) is 21, creatinine is in the 3's, potassium is 3.8.  For now he will get platelets everyday and blood as needed.  He sleeps most of the day because of the disease and medicines but there are still those moments we get like the day they came to do an ultrasound and he asked for “sister” and said he wanted/needed her so she got close to the bed and he reached for her hand and just held it while the test was being done.  He asks for her regularly to be sure she is near and Sykora does not want to leave as she wants to be there for him.  And yet another last night we got something that has not happened all week – he actually sat up and watched the Astros and sipped on water.  Thank you God for these small moments.  Though some numbers look much better than they did Monday the doctors are afraid the damage has been done and advised that we bring in out of town family to visit.

Our Cowboy is not going down without a fight.

Thank you again for your love and support.

Update 16 July 2012

His blood pressure has dropped to 50's / 20's and still has not urinated. Giving him fluids to help his blood pressure can cause him to swell up and start retaining fluids in his lungs. Which would be painful and uncomfortable for Tynan. No fluids could put his kidneys in complete shut down. Giving him blood transfusions will elevate his potassium and could cause his heart to stop. No blood will leave him so tired that he will fall asleep and not wake up. He is at a high risk for his fugal infection to come back without his antibiotic; however it will make the kidneys worse. Tonight we got continuous pain meds via IV, and he seems to be getting a little rest.

Praying he sees another day that God has made.

Thank you again for your love and support.

Abcess 16 July 2012

We decided to come to clinic today since Tynan was feeling pretty bad yesterday; instead of waiting till tomorrow.  After examining him they are pretty sure that he has an abcess inside the large intestine.  We are being admitted today for a couple of days, in hopes that they can at least get some of his pain and discomfort under control.  They will also start him on some IV antibiotics and fluids.  The plan is to get him feeling better and send us home on more IV antibiotics and more meds. 

He will also be getting blood and platelets today.  Our new all time low on platelets, was 4 today.  And his red blood cells were at 6.8. 

Looking for that middle ground.

Last week Tynan's numbers were down and back up again.  Because of the chemo he is taking we were able to bring the blast count down considerably; however with that comes a low ANC; putting him at a very high risk for the fungal infection to come back.

He'd been running a fever every morning between 4am and 5am; then for two days he was doing great. Since Friday evening he's been running fevers consistanlty(up to 105.0), lots of nausea and vomiting, stomach pain, (he says the stomach pain is different than last time), and sleeping all the time.  He looks very tired and very uncomfortable again.

We will be repeating a FISH test again at next clinic visit; hopefully that will be tomorrow instead of Tuesday.

God Bless - From Tynan and the Family

Update from clinic 2 July 2012

On June 26th we had a blast count of 6% showing in his bloodstream and a short 3 days later on Friday the 29th his blast count had gone up to 46.8%.  Today our blast count has gone up again. It is now at 55.9%.  We re-started his oral chemo meds and will pobably increase the dose today.  The good thing is that he is not in pain at this time.  He is still able to get around and play when he feels like it.    We are getting blood and platelets today, as he is low on both.  Probably due to the oral chemo.  White blood cells are still high at 21,000; but his ANC is still looking good at 3,320; which is a great blessing.

Conflicting Numbers

Tynan has never followed the logical pattern of how things are suppose to be; and Tuesday was no different.  His red blood cells, platelets, and ANC are all great. He is retaining his red blood cells and his platelets; and his ANC is over 6,000.  We did NOT have a blood or platelet transfusion on Tuesday which is awesome; however his white blood cells have jumped up to 10 (which could indicate that the cancer is getting worse.) and the blast count is back at 6%.  Usually when the cancer is present all his numbers would be down.?.?.?.? Typically the marrow would need to be full of cancer before the blast count becomes visable in his bloodstream. Could this mean that his marrow has gone from only 55% cancer cells to 100% cancer cells in a matter of 4 days????  In addition his FISH results are now showing only 86% donor cells.  Not great, but still hopeful.  We will repeat the FISH on Friday, and see what those results are showing.  There is still a possibility that we will repeat a bone marrow aspirate to see what his marrow is showing in hopes that it will help us establish a pattern of the difference between the biopsy and the FISH results. 

On a good note, he seems to be doing pretty good.  He's not taking any naps, and he has enough energy to WANT to go places and get out of the house.  For that, we are greatful.

God Bless You ALL!!!!!

ANC is still getting better

Today has been a good day.  Tynan's blood pressure has been good all day.  His red blood cells (9.5) and platelets(82) are holding up, BUT we got both transfusions just for the extra boost and to make sure that he does not run low on platelets while attending the BIG EVENT this weekend.  His ANC had been trending down the last 2 times we were here but has jumped back up to 4760 today!!!!!  Yay!!! 

Looking forward to the weekend.  God Bless you all.

I think Marivel said it best

The biopsy results were not what we wanted, or should I say, not what we expected to see.  Tynan's marrow is showing 55% cancer cells.  So even if he's not totally cured (yet), God is definitely working on something.  He was working on something when he made the fungus go away.  And after going to the ER with stomach pain; and high blood pressure; I think we have gotten his bloop pressure under control. 
We've been given the option to go ahead and give Tynan a donor infusion; IF we want to.  If he gets the infusion; we have to be willing to accept the risks. With a new cell transfusion they would have to give Tynan immune supression meds; which could cause the fungus to come back(we do not want that); but if they don't give him enough immune supression meds then the gvhd could be bad too. There are lots of complications that could arise. 
We feel that God has brought us this far and will carry us through if it is his will.
God Bless you all. We Love You.

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and now it's the blood pressure issues

We have known for some time now that Tynan's kidneys are not functioning as they should be.  This would probably be a combination of several things.  Radiation, chemo and various medications would be the top three.  Of course, bad kidneys gives us high blood pressure.  Tynan was put on blood pressure medication while we were in Florida, for his Make-A-Wish trip to Disney.  For the most part, his blood pressure has been under control; however, when we started agressive anti-fungal medication(IV), it got worse.  His blood pressure has been on a roller coaster ever since.

We came to the ER last night because he was having severe tummy pain.  Thankfully it was just constipation.  While that has been taken care of, we were admitted because of his blood pressure.  It is still running high but is getting better. 

We will continue the blood pressure patch but will add another medication by mouth.  We have also learned today that because of the type of fungus he had he will have to continue the anti-fungal medication(IV) for about 3 months; 7 days a week; and slowly be taken off of it. During this time his kidney function will be monitored closley.  They are considering giving him another PICC line to help us keep him well hydrated during these months.  When we are done with that we will continue a less agressive anti-fungal by mouth for about a year. 

And all of this rests on the results of the bone marrow biopsy that we are shooting for tomorrow. We have been put on the schedule as a backup, so keep your fingers crossed and pray that get a slot.

IF the results come back with "miracle" written all over them; then the BMT/Oncology teams will have to decide how to proceed.  Initially, the thought was to take more T-Cells from Sykora and tranfuse Tynan the same day; however IF the donor cells, already in the marrow, were stimulated by the fungus, there is a chance that "fresh" T-Cells could suppress the currently active cells.  It is possible that we should just let God finish, in his own time, what he's started with Tynan's little miracle body. 

On a good note, the concerns we had regarding new cells causing some type of reaction, have been put to rest.  So that means that we are on schedule for making it to the benefit in Premont this coming weekend, and having Tynan make his appearance in appreciation of the continued support and prayers.

There are a few people out there that don't know if they should believe; in heaven, or God, or miracles.  Their faith has been tried, and they have let their anger get the best of them.  People that say, how can there be a God, if this is happening to so many good kids?  I can't say that I have never been angry, or have never asked why, but I have never given up on my God and my faith.  My pain came from having enough faith to know that it's not what I want, it's what God wants; so matter how hard I pray for what I want, I know God will give me what I need or what I can handle.  But I also have enough faith to ask for the ultimate miracle, and strength, and the ability to see Tynan's purpose clearly.  As my husband wrote, Tynan's purpose was to show us all LOVE. Love for each other, for our children, for our communities, and for strangers, with each and everyone taking something different from our journey.  And even though the doctors have "isnstructed" us to "keep your emotions under control, until the results are back." I know that Tynan made this journey to show those who wonder and question, THERE IS A GOD AND HE IS WONDERFUL AND POWERFUL AND HE CAN HEAL.  Seek him and keep him close and your faith strong, and he will show you the way in all you do.  See his many miracles, in Tynan.

We have a long road ahead of us still, but everything will be alright!!!!! 

Let's all P.U.S.H. together!!!

(Pray Until Something Happens)

God Bless our Crusaders!!!!

Back in the ER

Quick update - Tynan was having severe belly pain earlier today so we loaded up and came to the ER. They confirmed what we had hoped; constipation. So now we've got that under control but his blood pressure continues to shoot through the roof.

His blood pressure had been running up as high as 175/119 which is very much in the stroke range. We will stay overnight; maybe a couple of days until blood pressure can be controlled.

Good night Crusaders and God Bless!!

Keep Reaching for the Heavens!!!!!!!

KEEP THE PRAYERS COMING...............THEY ARE WORKING!!!!!!

On Tuesday, we drew extra labs to determine if by some miracle it was Sykora's cells that "woke up" and started fighting this fugus infection.  Well, it was!!! I guess we were reaching in the right direction. Tynan's FISH test would show that Sykora has taken over again!!!  Tynan is 99.4% donor cells.

So the plan today (even though we never thought we'd be back for any type of procedure), is to take Tynan back for another bone marrow aspirate/biopsy(Monday the 18th) to see what his marrow looks like.  The thinking would be that if Sykora's cells have spilled into his peripheral blood that she should have taken over the marrow also!!

It's hard to get soooo excited for fear that things will go back the other way; but at the same time there is no medical explanation for any of this; so the ONLY explanation is the Power of Prayer, and our faith to believe that Tynan can be THAT KID, the one that makes it, no matter what medicine says; because GOD IS IN CONTROL; and HE calls the shots down here!!!  And that's why we WILL be excited.

Thank you Crusaders for the continued prayers.

Not just for us, but for all of us, who compete in this rodeo circuit. 

Our Gracious and Heavenly Father,
We pause in the midst of this festive occasion, mindful and thoughtful of the guidance that you have given us. We would ask today, Lord, that you be with us in this rodeo arena as we pray you will be also with us in life's arena. As cowboys, Lord, we don't ask for any special favors in this arena today. We only ask that you will let us compete in this event, and in life, as You did for us. We don't ask that we never break a barrier, draw the steer that won't lay, draw around a chute fighting horse, or a bull that is impossible to ride. Help us to compete in life as honest as the horse we ride; in a manner as clean and pure as the wind that blows across this Texas country; so when we make that Last Ride, that we know is inevitable, to the Country Up There.. Where the grass is green and lush and stirrup-high and the water runs clean and clear; You will tell us, as our Last Judge, that our entry fee's are paid. We ask these things in Christ's Name.

....AND IT'S BEEN ANOTHER GREAT RODEO FOLKS, THANK YOU

FOR COMING TO SUPPORT THIS LIL' COWBOY.......WHOOOPA!!!

It's deffinantley fungus, BUT we have an ANC!!!!

ANC is the number that tells us what Tynan's immune system is doing, and how easy he can catch an infection. Tynan's normal over the last three months or so has been 0 - 150.

Last Friday his ANC was 520, and we were thrillled.  We had not expected it to ever be over 200 again.  He also blew a nasty looking "something" out of his nose, that we hoped would give us answers as to the type of fungus he had. 

As you all know, Tynan has had some really good, energy filled days.  They have been a blessing, considering that a few weeks ago he would only get up to go potty.

Today has been more than just a blessing, it's been miraculous.  Tynan's ANC is at an unexplainable 1580. Yes 1,580.  Not just ok, but above great!!!  The CT scan we requested came back with no indication of lung disease/fungus (as opposed to the xray that did show some disease present in the lungs), nor does it show any indications on the bone in the sinus cavity.

The doctor has ordered a FISH test. This will tell us if Sykora's cells are present, and at what %.  They are thinking that it could be possible that her cells woke up with the fungus and started fighting the infection.  It is a far reach, but as long as we keep reaching in the right direction; up to the heavens; I think ANYTHING IS POSSIBLE.       

My little cowboy has dreamed of being a rodeo cowboy since April 2010, and looking back I realize that he's been riding in his own rodeo circuit for 2 1/2 years. It's one of the toughest circuits on dirt. We'd like to thank each and everyone of you for following Tynan to each and every rodeo. 

"Sometimes you make 8; sometimes you hit dirt. Go on pin another number on the back of my shirt.."

These are lyrics from one of Tynan's favorite songs......I encourage you to listen to it.......Texas in 1880 by Radney Foster and Pat Green.  This song is truly about chasing your rodeo fever, but it reminds me of all the times Tynan has been bucked off only to get right back on again; and let me tell you, TODAY........HE MADE 8 BABY!!!!

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Ups and Downs

Almost two weeks ago, Tynan was so uncomfotable, and every day seemed to bring more pain and less smiles.  He accepted few visitors and didn't get off the couch unless he needed to go potty.  Tynan had gone from napping a couple times in the day to being awake a couple of hours in the day.  He went from going to the bathroom to using a urinal.  He'd almost quit eating all together.  Just when we thought we'd only see him get worse,.....we are blessed once again with some wonderful days.

They may not be as wonderful as they were two months ago, but they are far better than they were two weeks ago.  He kicked the girls out of the house earlier this week so the he and dad could have some boy time. He stays up most of his day. And yesterday he asked to go "out." We went to the mall and he shopped.  Yes, he shopped.  We are greatful for these better days.

Today was our regular clinic visit for blood counts and transfusions.  Tynan has had no immune system for over two months and today his ANC was 520.  That is great for someone who was not expected to recover his immune system and with an active fungus.  WOW!! Where did this come from. Along with having an ANC, his platelets were not yet at transfusion levels. All his numbers were trending in the right direction.  And he has actually put a little weight back on!!!!

The down side of today is that 1/2 way through his antibiotic infusion, his heart rate dropped from about 102 to 52.  We are praying tonight that this is due to the amount of fluids that were pushed through his port.  His blood pressure also continues to be high, which may also be a contributing factor. 

Thank you dear Lord for these few days of smiles, motivation, and appetite.


Everyday you hear of someone else; another innocent child, another loved one, another friend; and their families that are effected by this monster they call cancer.  To all of you, you are in our hearts and prayers daily.

The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalms 34:18

Thank You Jesus for a Better Night!!!

Mr Blake (Dornak) came by yesterday to see Tynan and of course with one of his favorite cowboys sitting right next to him, cheering him on, he had to take his medicines. Thanks Blake!!! He figured out how to "chase it down" so that the bad taste doesn't stick around. Funny how those instructions from mom and dad just never did the trick:) So.....last night was a better night. Thank God for codeine. Although his fever is constant and he is having a hard time breathing through his nose he slept without screaming. Still got up every 3-4 hours but no screaming no crying, just needing water, milk, or a potty. Up early this morning; and having coffee with mom while dad runs out for donuts and kolaches!!!!

Another Bump In The Road

We've been asked every clinic visit how Tynan's pain is and the answer is usually, "there is no pain." However in the last few days he has begun to complain of pain. In the last few weeks his energy has gone from being the bull to only watching the bulls.  His appetite continues to diminish, and his platelets and red blood cells continue to drop in spite of the continued transfusions, and his fevers are continuous for most of the day.  In addition, today we've been told that Tynan could POSSIBLY have a fungal infection.  With every bump in the road comes new decisions.  I pray that this is not a fungus, however the chances are stacked against us.  A fungal infection can be very painful and disfiguring and VERY QUICK.  If this turns out to be a fungal infection we will have decide how quickly we will stop Tynan's blood transfusions, in hopes that God will take him in his sleep before the numerous complications that a fungal infection can cause.  Please pray for our little cowboy!!!!! 

God Bless our Crusaders who continue to follow us, support us, and pray for us. We Love You All!!!

Fishing at CCR

Prayers keep coming and so have the blessings. From smiles and good days, to pick-me-up packages, and fishing trips. We were invited back to CCR this week and had another amazing couple of days.  They keep Tynan going through the fever and discomfort.  His love for being outside and shooting his gun keeps his spirit up and moving.  Sykora seems to be our little fisherman. She reeled in the biggest bass this week at 19 1/2 in, with Tynan coming in a close 2nd at 18 1/2 in.  Of course his specialty is still shooting his gun!!!!

Mike and Tynan getting ready to fish.

A little sunny out.

Sykora reeling one in.

First catch of the day.

This wasn't the big one - yet!!

Tynan and Mom

Ty and Sykora

Ty, Tynan, and Sykora

Sykora, Ty, Mike and Tynan

Priceless!!!

He just loves to hunt these snakes.

not to worry - the head is gone!!!

While Tynan doesn't mind the snakes;

Ty - the ranch manager - DOES!!!!

Sorry about that Mr.Ty.

Squirrel hunting.

20 rounds later!!!!!

And it is now in the freezer waiting to be mounted....

Tynan's counts continue to go back and forth. One week we have blasts and the next they are gone.  His fevers continue and are becoming more frequent as the days go by. Some days they completely take him out, but then there are days when he runs a fever and he continues his normal activity.  Thank you again to everyone who has helped us make everlasting memories.  To our families that we have met along the way on the 8th and 9th floors of Texas Childrens Hospital and around the world.  May God Bless you and heal you all.

Fever is gone but Blasts are back.

On April 27th, we returned to clinic for our normal blood work and transfusions.  As we waited for numbers we prayed that the blast count would not have increased by too much.  When the counts came finally came in, his blast count was a whopping ZERO%. Wow!!!  No real explanation for why his counts had gone from 12% to 0% but, we were more than accepting of the results.

On Tuesday we returned for our usual and once again his blast count came in at 0%!!!  Still no explanation for why his counts were at 0% blasts.

On Wednesday, May 2, 2012, Tynan was grumpy most of the day, and by 9:00pm he was cold and couldn't get warm. By 9:15pm he had a temp of 100.7.  We gave him some tylenol and wrapped him up trying to keep him from shaking. At 9:45pm we took his temp once again and he was at 104.0. We jumped out of bed, grabbed the hospital bags, put some numbing cream on his port, and were on our way to the ER.

Tynan 5 -  tywteufudcfyicf RYFRFUCDGAH fsuvfcufigjryivfdgia ghfjgjhfafafaf. eft4rfdweeddwe5dsdfxs dehfdfgdgyegyt ejdysfadefytwdtdet ywqyf frydef fqgyufyetrdeyq6eeyef5 veruhfyef.
"Thank You for the posts on my facebook page" that was from Tynan, who keeps interrupting me from typing this blog.

We've been very fortunate to be seen immediately when we arrive at the ER (due to diagnosis), so that is never the problem; however it's the service and expertise that is lacking at times.  We came in, went to get vitals done, rushed to the trauma room, had his port accessed, had to have a bolace, and then put in an ER room for antibiotics. By 5am we were on the 12th floor and resting for what was left of the morning. 

Thursday(3rd)was a rough day.  He ran fever and slept most of the day, and our labs came back showing blasts once again.  Blast count is at 5%. We prayed that it would go and stay gone, but knew that the probability of that happening was slim to none.  Still breaks my heart to see on paper again.

On the bright side, he is smiling once again this morning, ready to hunt, fish, or rodeo.  Look out world, fever is gone and Tynan is BACK!!!! God is Great!!!

Never Ready

You always think you're ready, but you never really are. Today's clinic visit brought the dreaded news. 12.3% blasts. When we went to the ER for platelets on Saturday, Tynan's platelet count was at 11. We have not seen him under 20 since prior to transplant. So the thought crosses our minds, but hope keeps it unspoken. He still looks and acts like nothing is wrong; and we thank God for that everyday. Looking at today's counts the blast count was present on Saturday at 3.4% and they just didn't tell us.

For now, we will increase his chemo and slowly take him off the steroid. We will continue our clinic visits twice a week until his platelets or blood transfusions are needed more frequent.

There is still no time stamp. It could be 4 months or something could happen for no reason at all and only be a week. We continue to pray that most of those days will be pain free and full of smiles.

We want to thank everyone for the continued support, the love, and the prayers. God Bless!!!

Still a little swollen from an allergic reaction to his platelets today but this package from PBR sure did help make one of those smiles!

Disney, you aint got nothing on Cold Creek Ranch

When Make-a-Wish granted us a wish, of course Disney was an option. Knowing that we would need medical facilities, we decided that it would be SAFER to go to Disney. However; when we arrived at Give Kids the World and Tynan made his first wish at the wishing well, it was.....I wish that we could all go hunting together. Just then, my heart sank into my stomach.

When I shared that story at clinic, I never expected that he would have another wish granted; but he did, and it was amazing!!!!  We have so many people to thank for making this weekend possible starting with our social worker; Bonnie, John, Rex, Donny, Bruce for his extreme generosity and last but not least, to the two guys who got stuck with us for three days...Mike Gilmore and Ty Angel. We couldn't have had two better guides/hosts. You guys were awesome!!!!!

Tynan had a GREAT time!!!  And weven though we had to go to the hospital for platelets today(Saturday 21st) Tynan's spirits are still soaring high!!!
Feeling the presence of God will warm your soul!!!.......True story..........In the middle of a "no service" area; trying to conduct business and coordinating this hunt.....The ONLY calls that would connect were those needed to make this hunt possible.....GOD IS GREAT!!!!!!!!!!!!!!!

                                    

Cold Creek Ranch

                                       

Just arrived, and following Mike for the quick tour to pick a room.

First things first!!!  He was so impressed with the shower that he wanted ALL

of us to shower together, even Grandpa (the innocence of a child...too funny).

Sykora checking out the bunkbeds......

The kids picked the bunkbed room upstairs!!!!
What is it about bunkbeds???

Tynan taking in the scenery after picking our room.

And this is what he saw...........

BarBQ Pit and Sitting Area

Fire Pit

and one of three ponds on the property.

Then he ran to the other end of the room;

opened up the balcony doors and saw.....

This was our favorite fishing pond; and didn't even know it yet.

Once we set our stuff down we headed back downstairs

to see what the day would hold. The lodge was amazing!!!

Everyone asks, "was it beautiful".......It was GORGEOUS!!!!

part of kitchen

gameroom

This is the bar in the gameroom, Sykora spent lots of time sitting here;

but NOT for the liquor...........

.......for the big screen TV that sits about the bar. 

She loves TV......lol

dining and living areas

We all gathered on the back porch to load up

on drinks and head out for a tour of the ranch.....

and Sykora found a resting spot......

We saw blackbuck, addax, oryx, elk, whitetail,

hogs, bald eagle, axis, osprey(in action), fallow,

snakes, tilapia, bass, bluegill, and........

.......we saw these cute little guys.

These addax will just about pose for the camera!!!

After riding around and seeing the animals we made an

attempt to sight in Tynan's rifle; found some issues with

his gun so we had to borrow one.  But target practice was fun.

 

Mr. Bruce helping Tynan find the target in the scope.

A little 4 wheeler fun!!!

  

Sykora, Mike Gilmore, and Tynan

Headed to the front pond to do some fishing.

We didn't have any live bait, so Mr. Ty headed to town to get some minnows.

And just for kicks, Mr. Mike went back to the house, rinsed off some

shrimp we had for lunch; and brought it back to the boathouse for bait.

They had a blast catching large perch and bass with the shrimp and then the minnows arrived.

Tynan, Ty, and Sykora

This is actually Sykora's catch. However she did not want

to put her thumb in it's mouth. Didn't mind touching it, though.

Sykora's catches and Tynan throws 'em back!!!

Team Work!!!!

She did finally come around to holding her own fish, and is very

proud to say that she got, "bass thumb"

This was one of their double catches.

Tynan, Mike, Sykora, and Ty

He was probably saying, "oh my gosh, I can't hold it anymore!!!"

It was finally time to head to the blinds.  Sykora decided she was

not going to hunt the first evening. So Ty, Tynan, Harry and Myself headed for the blind.

Sitting in the blind.

A few minutes after getting in the blind, I get a text.....

"we're hunting"

My little city girl, had decided to go hunting!!!!!

Tynan shot at some hogs, but didn't seem to have killed anything.

We got out of the stand and headed to check

if there were signs of a hit under the feeder.

This is Tynan walking to the ranger.

Looking under the feeder; hoping to find some blood.

First evening hunt was not a huge success, but we did find a hog

the next day that would most likely have been Tynan's kill.

(I will try to post video soon of Tynan's hog shot)

The Ending to a Good Night.

Tynan and Mike sitting at the fire pit.

The next morning we split up. Dad went with Tynan and

Mom went with Sykora. As we headed to the blind we saw....

Sorry for the quality; but I think you can make it out.

Sykora getting in the stand.

Day 2

Getting ready to shoot her first hog.

Harvest!!!!

The look of going 2 for 2!!!

Just call her Annie.

In the meantime, Tynan was having no luck. We went back to the lodge for a late breakfast.

Later we decided to go hunting safari style, looking for a particular blackbuck. However;

we could never get close enough to take a shot. So we went driving around the property,

taking in the scenery; when all of a sudden we see another blackbuck and Tynan was finally able to

take his shot. He didn't drop him, but he'd hit him and the blackbuck couldn't even run away.

It was then that the hunt began.....on foot. We searched for the buck for about an hour, and still

no luck finding him.  We decided to take a break for some lunch and little more fishing, 

before heading back out to look for Tynan's blackbuck.  We searched again for what seemed like hours, and still no luck.  Finally we went back to the house to get ready for dinner....

 

Popo's catch.....and another one of those,

"It's too heavy, I can't hold it anymore" smiles.

One of two official minnow handlers.

Dad's big catch!!!

Another one of Sykora's catches.

She had her line busted 4 different times.

As we got ready for dinner, Ty left on the tractor to fill the feeders.  A few minutes later, 

Mike's phone rings, it's Ty........and he's found Tynan's blackbuck!!!!!!!!  

Tynan, about to tie him up.

Mike and Tynan

Ty, Sykora and Tynan

Way to go my lil' cowboy!!!

Ty, Sykora, Tynan and Mike

Tynan and Mike

His new buddy.  You and me baby we're stuck like glue....lol

My lil' guy just can't resist a feather.

While everyone else was fishing,

Tynan and Mike were hunting snakes.

Sykora, Tynan, and Mr. Bruce

Thanks for an amazing weekend!!!

We are forever greatful to all of you who made this trip both possible and amazing.

God Bless each and every one of you!!!!!!

Love, The Chapa Family