Thoughts and Prayers Requested

Fred Dowler
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Re: Thoughts and Prayers Requested

Postby Fred Dowler » Sat Jun 28, 2014 12:31 pm

And I'll add my own best wishes onto that.


Tulane sports: small football stadium, very small basketball arena, w̶i̶n̶n̶i̶n̶g̶ ̶p̶r̶o̶g̶r̶a̶m̶s̶, h̶o̶n̶e̶s̶t̶y̶ ̶a̶n̶d̶ ̶a̶c̶c̶o̶u̶n̶t̶a̶b̶i̶l̶i̶t̶y̶ , but, hey, now there's tailgating.

Jonathan
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Re: Thoughts and Prayers Requested

Postby Jonathan » Sun Jun 29, 2014 10:07 pm

Glad to hear that your son is home and better.



DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Mon Jun 30, 2014 9:09 pm

Thanks again to all for your support.

Tomorrow (Tuesday, 7/1) is a HUGE day.

We go back to Sloan Kettering Cancer Center to have a marrow analysis and the number needs to be 0.01% or lower. (They measure the cancer cells in the marrow, and with his type of cancer it's not good if the number is anything above 0.01% after the induction phase of treatment.)

We'll start the next phase of chemo, but if the marrow analysis doesn't yield a good number, we might be looking at a marrow transplant.

Continued thoughts, prayers and anything else that generates healing vibes will be appreciated.

GO ZACH!

Roll Wave.


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Mon Jul 28, 2014 12:55 pm

Hi, All,

I thought I would update this page so folks that are sending out thoughts, prayers, and healing vibes through the universe know where we stand.

Zachary is in remission right now. While that may seem great (and yes, it is) there's still a long way to go. His particular Leukemia, with the Ikaros deletion, is prone to relapse. If we avoid relapse, the survival rate is good. If he suffers a relapse, the survival rate plummets. And that scares the living daylights out of me.

His blood counts are coming back after the latest round of chemo. Thursday, 7/30, he'll have a "permanent" medi-port surgically installed for the next three years of treatment. A week from today, 8/4, he'll begin what can only be described as the treatment from hell. He'll be given a high dose of Methatrexate, which is the strongest form of Chemo little Zach will be subjected to. They immediately hook him to IV fluids to flush it out of his system. He (and either his Mom or me) will be at the hospital every day from 8 to 6, and every night at home we need to wring his diapers every hour or so over a Ph strip to monitor the acidity of his urine. We also have to give him a pill every 4-6 hours round the clock. If the Methatrexate is out of his system by the end of the week, great! He gets to start it all over again the following week. If any is still in his system by Friday afternoon, he gets admitted to the hospital. It's a dangerous drug, but the protocol is necessary to try to avoid any remaining cancer in his system that may lead to relapse.

It's not going to be a fun time for any of us, though I think this will be harder on Zach's mother and me than it is on Zach. He doesn't know what's going on, and is a trooper that smiles, laughs, and warms the heart of all of us that are around him. Except his twin, whom gets jealous that we dode over Zachary and he's not quite getting as much attention.

This has been and continues to be the hardest test of my life. It's more difficult than an RD press conference.

I will be selling a couple of games tickets as a fundraiser for Zachary's treatments. I know most of you have tickets already, and will be approaching the visiting team's fans to see if I can up the ante. I have an account set up, and the IRS has issued an EIN for this, but I'm still working to get it to be tax deductible. I may have to approach a local church, as I've been told it's not appropriate to set up a 501-C3, which is what's needed to make it tax deductible.

Thanks again for the support I've received from this community. It really does help a whole lot.

Go Zachary!

ROLL WAVE!


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

ccap05
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Re: Thoughts and Prayers Requested

Postby ccap05 » Mon Jul 28, 2014 3:40 pm

Great news. My thoughts and best wishes are with you. I look forward to more good news in the near future.



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tpstulane
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Re: Thoughts and Prayers Requested

Postby tpstulane » Mon Jul 28, 2014 3:49 pm

Good for you guys! Hope it continues!


Stadiums get old, winning never does.
Tulane Class of 1981

jonathanjoseph
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Re: Thoughts and Prayers Requested

Postby jonathanjoseph » Mon Jul 28, 2014 7:54 pm

Great update!



DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Wed Sep 03, 2014 1:45 pm

Update on Zachary:

He is still in remission, and we're 15 days into what's called "Consolidation II" of the treatment. This is actually an easier phase for us in terms of how often we have to go to Memorial Sloan Kettering Cancer Center ("MSKCC"), but it's a tough one on Zach. It has a series of 4 spinal taps during which they give him the methatrexate directly into the spine once a week. The second one is tomorrow. He takes steriods orally (which isn't easy) and fortunately he's eating a bit more. He's lost over 10% of his weight, and sleeps a whole lot. It's scary as hell because despite what the doctors say (and sometimes they lie) seeing him sleep so much and be so frail is really, really hard. I don't want to lose my son.

We had a very successful fund raiser back on the 21st of August, and will be doing another in late September/early October. I have tickets to the 4 games between the opener and Temple that I'll be selling to raise money for Zach's Medical Related Expense Fund. If anyone wants to make an outrageous bid and save me the trouble of going through the auction for any particular game, let me know! :)

I'm coming into NO for the Yulman opener, and am already having second thoughts. There's nothing I can do here this weekend, but I feel a little guilty about going out and having a fun weekend. It's a quick trip, about 40 hours in town.

So if you meet me, and I hope I meet a lot of you, give me a hug, and don't feel bad if I sob a little bit.

This GoTula.net community has been a huge help during all of this. Sometimes I get my anger out posting here. Thanks for letting me vent.

ROLL WAVE!

BEAT TECH!


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

winwave
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Re: Thoughts and Prayers Requested

Postby winwave » Wed Sep 03, 2014 3:20 pm

Best wishes.


It's the facilities stupid!

DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Thu Sep 04, 2014 6:24 pm

Thanks, Winwave. I hope to meet you Saturday.

We got some alarming news today at MSKCC. Although he's in remission, they're concerned about a few particular cells that keep showing up in the marrow, and want us to start considering a marrow transplant.

Please pray we don't have to go that route.

I almost cancelled the trip for the opener, but we're a few weeks from that decision, and there's nothing I can do here...family is encouraging me to go.

OMG could I use a Wave victory on Saturday.

ROLL WAVE!

BEAT TECH!


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

winwave
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Re: Thoughts and Prayers Requested

Postby winwave » Thu Sep 04, 2014 9:45 pm

Sorry to hear that. Will continue praying for him.


It's the facilities stupid!

JDTulane
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Re: Thoughts and Prayers Requested

Postby JDTulane » Fri Sep 05, 2014 12:59 pm

Sorry to hear that. Hope the wave brings some relief to a troubled time.


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DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Fri Sep 05, 2014 4:43 pm

Getting on a plane shortly!

Roll Wave!

Beat Tech!


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Thu Oct 16, 2014 5:39 pm

We got our best news in over a month today: Following his latest round of chemo (and steriods, etc) MSKCC did a bone marrow analysis via spinal tap this past Tuesday. About an hour ago, I got a call from the doctor: Zero point zero zero zero cancer cells were detected. THIS IS THE BEST POSSIBLE OUTCOME.

It means that a bone marrow transplant is off the table!

We still have 18-24 months of treatment, which starts either tomorrow or Monday (based on his blood counts) with oral chemo, but this is a much better course to be on than had there been ANY sign of leukemia cells. Truly, this is a blessing.

Thanks to all for the support and thoughts and prayers. I really do appreciate it. Please keep Zachary in your prayers, and I will keep this community up to date.

ROLL WAVE!


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

winwave
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Re: Thoughts and Prayers Requested

Postby winwave » Thu Oct 16, 2014 5:45 pm

Glad you got good news. He'll remain in my prayers.


It's the facilities stupid!

jonathanjoseph
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Re: Thoughts and Prayers Requested

Postby jonathanjoseph » Thu Oct 16, 2014 5:53 pm

Great news!



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GreenLantern
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Re: Thoughts and Prayers Requested

Postby GreenLantern » Thu Oct 16, 2014 8:23 pm

Wonderful news. Praying for your family.



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Re: Thoughts and Prayers Requested

Postby sader24 » Thu Oct 16, 2014 9:02 pm

Great news, hope it keeps getting better everytime.



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tpstulane
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Re: Thoughts and Prayers Requested

Postby tpstulane » Thu Oct 16, 2014 10:56 pm

Super!


Stadiums get old, winning never does.
Tulane Class of 1981

mbawavefan12
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Re: Thoughts and Prayers Requested

Postby mbawavefan12 » Fri Oct 17, 2014 12:17 pm

Wow, that's great.



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ajcalhoun
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Re: Thoughts and Prayers Requested

Postby ajcalhoun » Fri Oct 17, 2014 5:07 pm

Great news!


Welcome to gotula.net, where it's never too late to mention Tanner Lee or Andy Cannizaro.

wavemania
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Re: Thoughts and Prayers Requested

Postby wavemania » Fri Oct 17, 2014 9:18 pm

Alleluia! Praise God! Great news



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NOLABigSteve
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Re: Thoughts and Prayers Requested

Postby NOLABigSteve » Fri Oct 17, 2014 10:37 pm

That's really great to hear :-)


Roll Wave!
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DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Thu Nov 20, 2014 12:11 pm

Hi, All,

Zachary is getting treatment today, a week delayed due to low blood counts. He's been better the past few days, with the steroids from last week kicking in, he's eating and has put on almost two pounds. Let's hope today's treatment doesn't end that. At the same time, he hasn't been sleeping well, adding stress to the whole family. Today's treatment involves two types of chemo: vincristin and (lower dose) methatrexate. (I probably mis-spelled those drugs, but I really don't want to worry about learning how they're spelled.)

Last Friday, ahead of homecoming, I set up a GoFundMe account because some of my fraternity brothers wanted to donate to medical and medical related expenses. If anyone from here wants to make a donation (or just check it out) you can do so here:

http://www.gofundme.com/ha06pw

But your thoughts, prayers and support means a whole lot to me, so if you don't (or cannot) donate, that's ok. Say a prayer for Zachary, and we'll all make it through.

Thanks!
Dave Price
Tulane '85


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

DfromCT
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Re: Thoughts and Prayers Requested

Postby DfromCT » Sat Nov 22, 2014 4:16 pm

Update: Zachary seems to be coming through this latest round of Chemo fairly well. His spirits, and more importantly, appetite, are still strong. I can only hope he gains another pound or two, as I've been so scared with his weight so down, that we might lose him to something other than the leukemia.

Thanks again for your thoughts and prayers. This is the hardest test I've faced, and it doesn't seem to be getting easier.


" For every alum, no matter where they are...I want a football coach that's going to make Saturday something you anticipate and look forward to." Troy Dannen

Thank you all for your ongoing support as my son Zach continues to beat leukemia

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