Monday, October 22, 2012
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.
Sunday, October 7, 2012
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
Friday, September 21, 2012
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!
Sunday, September 16, 2012
Thank you all for the continued support and prayers.
Sunday, September 9, 2012
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.
Wednesday, August 29, 2012
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!!!!
Sunday, August 5, 2012
Tuesday, July 31, 2012
Viewing and Rosary
August 2, 2012 (6pm-9pm)
The Church Without Walls
5725 Queenston Blvd
Houston, TX 77084
August 3, 2012 (10:30am)
Christ The Redeemer Catholic Church
11507 Huffmeister Rd.
Houston, TX 77065
There will be no graveside service.
Sunday, July 29, 2012
Thursday, July 26, 2012
Tuesday, July 24, 2012
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.
Saturday, July 21, 2012
Thank you again for your love and support.
Monday, July 16, 2012
Praying he sees another day that God has made.
Thank you again for your love and support.
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.
Sunday, July 15, 2012
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
Tuesday, July 3, 2012
Wednesday, June 27, 2012
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!!!!!
Thursday, June 21, 2012
Wednesday, June 20, 2012
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.
Sunday, June 17, 2012
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.
Saturday, June 16, 2012
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!!
Friday, June 15, 2012
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.
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.
Tuesday, June 12, 2012
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!!!!
Friday, June 8, 2012
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
Thursday, May 24, 2012
Tuesday, May 22, 2012
God Bless our Crusaders who continue to follow us, support us, and pray for us. We Love You All!!!
Sunday, May 13, 2012
Friday, May 4, 2012
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!!!
Tuesday, April 24, 2012
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!
Saturday, April 21, 2012
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!!!!!!!!!!!!!!!
What is it about bunkbeds???