Tuesday, July 31, 2012

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

Sunday, July 29, 2012

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.

Thursday, July 26, 2012

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.

Tuesday, July 24, 2012

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.

Saturday, July 21, 2012

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.

Monday, July 16, 2012

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. 

Sunday, July 15, 2012

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

Tuesday, July 3, 2012

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.