Wednesday, June 27, 2012

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!!!!!

Thursday, June 21, 2012

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.

Wednesday, June 20, 2012

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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Sunday, June 17, 2012

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!!!!

Saturday, June 16, 2012

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!!

Friday, June 15, 2012

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


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.


Tuesday, June 12, 2012

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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Friday, June 8, 2012

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