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RE: Cancer Support Thread - 7/5/2010 9:27:01 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
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Thanks Veronica. They are still in the hospital all this week as well. Some of his counts won't come up enough to allow them to harvest cells. That's what they're waiting on now. He's getting antsy and wants to go home, but they also know that if they do, he'll be right back the next day. So, they keep him as occupied as possible. Joy said she doesn't know what it's like to feel married any more!
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/5/2010 9:34:45 PM
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IwillseekHim
Posts: 835
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Praying for Deegan and all you ladies.
What does PCOS stand for? I'm unsure of that abbreviation.
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RE: Cancer Support Thread - 7/5/2010 9:45:50 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
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quote:
ORIGINAL: IwillseekHim
Praying for Deegan and all you ladies.
What does PCOS stand for? I'm unsure of that abbreviation.
It stands for PolyCystic Ovarian Syndrome. It's where the ovaries produce many cysts. In the early years it was mostly treated by putting you on the birth control pill. But, through the years they have found some other possibilities. Like Metformin, which is given to diabetics, has helped some. It didn't work for me, so I had to go back to the bc pills.
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Veronica
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RE: Cancer Support Thread - 7/5/2010 9:51:14 PM
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wfisaac
Posts: 299
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Lisa, I can't remember if it was mentioned if Deegan has brothers and sisters? My heart goes out to the siblings as well during times like this. When my niece was on life support for a couple months I remember my nephew and how it was hard on him as well because everyone's focus was on his sister. He handled it well, but I know it was lonely for him.
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Veronica
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RE: Cancer Support Thread - 7/5/2010 10:18:52 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
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He has a brother who is 16. It's been hard on him, but it's actually been able to really help out his parents around the house while the other is at the hospital.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/6/2010 7:30:15 AM
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IwillseekHim
Posts: 835
Joined: 5/17/2009
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Reba, there are several that have come thru the p/p forum. A few that I can remember off the top of my head are:
Thomas, 16(SamsonUSA's nephew)
Ava, just recently had surgery. 99% cancer removed, Praise God.
13 year old girl with breast cancer
AH1's father
eeinaoj's father
Sam Bish, 8 year old who was put on prayer forum last summer. I have no idea how he is but I continue to pray for this child. Stage 4 cancer in knee and both lungs.
hazleyes' mother
calamitykelagain, scheduled mastectomy tomorrow
These are just a few I can think of without having my cup of coffee yet  . I gotta go get ready for work now. I pray for all these people and would appreciate your prayers for them also.
< Message edited by IwillseekHim -- 7/6/2010 12:41:58 PM >
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RE: Cancer Support Thread - 7/6/2010 1:06:19 PM
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reebz
Posts: 2745
Joined: 12/6/2008
From: Indiana
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Will continue to do so!
-reba.
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RE: Cancer Support Thread - 7/6/2010 4:14:47 PM
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ladioffaith
Posts: 2606
Joined: 3/31/2005
From: NE Ohio (L.A. . . Lower Akron)
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Veronica is right about PCOS. Except that not everyone who has it actually HAS cysts. It's a "cafeteria syndrome" where some have two symptoms, some have all, and some have just one, all in various forms.
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~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
The LORD your God is with you, he is mighty to save.
He will take great delight in you, he will quiet you with
his love, he will rejoice over you with singing." Zeph. 3:17
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RE: Cancer Support Thread - 7/6/2010 9:28:30 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
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Here are the updates from Joy on Deegan.
Tuesday, July 6, 2010 12:56 PM, EDT
So, we had a quiet weekend, though it was HOT outdoors. We are indeed grateful to be inside in the AC right now! Every summer when it gets like this I fantasize about putting in a pool, but then I realize that we’d have to build a poolroom/screenroom around it to be able to actually enjoy it without the blasted insects enjoying US. Oh well. A dream for later.
He was originally scheduled to have his vascular catheter installed today, and the GC tube is still on the table as far as being needed as a way to prevent malnutrition when he’s too nauseated to eat, as well as using it rather than trying to get him to swallow medications. I’m on the fence at this point, but leaning toward supporting the GC tube. I hate to see him throw everything up that he’s struggled to get down. The new plan is to install the vas cath Monday of next week. Then we can start the stem cell harvest and get the vas cath back out (preferably like the same day or next day- I’m unclear on that timing too). I do not at this point know if we will jump right into chemo round 2 right after that or if there will be a delay between the two. I also know that they need to get Deegan to the eye folks as he’s having some issues with vision and light sensitivity.
Oh, before I forget- please feel free to e-mail us at our e-mail address (listed under e-mail author) on the right hand side of his journal page. We will read and respond as we’re able. That way I don’t have to go digging through the guestbook for folks’ e-mail addresses. I do love reading his guestbook comments, and I KNOW (because I just asked him) that Deegan loves to hear us read your comments to him. It really helps keep his spirit up.
Thank you, John for your tribute donation! That is what enables this website to be here for us. Those of you who have blessed us directly or anonymously, our hearty thank you as well! This has been crazy financially. Even to just not have to worry about going shopping for things Deegan wants to eat like Doritos and Capri Sun and Slim Jims, you all help with that! Also, he enjoys opening the care packages and cards and such too, as they bring big smiles to his face!
I know there was more I was thinking about but I’ve forgotten (story of my brain, eh?) so I’ll end here. Your prayers are uplifting us and keeping us strong as we support Deegan. I pray for all of you too, that His presence may be in your lives as well. Hugs to all, Joy
Tuesday, July 6, 2010 1:42 PM, EDT
Ah ha! I know what I forgot. Blood donations- and I’m behind in this myself- summertime is when the blood banks usually fall to dangerously low levels. If you can donate and just haven’t, please consider doing so! Deegan has had a couple of whole blood transfusions prior to this stay at the hospital. And, in our 23 days here, he’s had like three whole blood transfusions and two of platelets. There may have been more, but that’s still a lot for one little boy!
I asked about doing a directed donation through our hospital here and it wasn’t a good answer for a couple of reasons, cost being one. Anyway, more on that later. Thanks, all! -Joy
I told Joy that I post in here - she is so very thankful for all the prayers.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/6/2010 10:11:31 PM
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wfisaac
Posts: 299
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It is good to hear the positive news regarding Deegan. I pray his parents will continue to be guided by God in the decisions they have been faced with. And praying that Deegan's body would grow stronger and be able to handle the things that need to be done.
************
Update on me: I had my infusion today and let's just say I scared everyone in that room...including myself. I had an anaphylactic reaction to the last drug they hooked me up to. I was talking to a friend who came by to see me and all of a sudden everyone of my fingertips started to itch really bad. I saw the nurse walking by so I got her attention and asked why would that be happening. She knew right away what that was a sign of so she hurried to their nurses station and I could see her working quickly gathering stuff and as she walked back out to me I all of a sudden had the worst sensation come over my whole body. I just looked at her and said "something is very wrong!" My lungs started to hurt and I could hardly get air in. And it's really hard to describe what I was feeling in my body and even in my mind. I was conscious but I hardly had the ability to communicate. I was very scared and I honestly thought I was going to die. They injected me with Benedryl and a steroid to help open my lungs back up. In the mean time that rash was going up my arms. And they hooked me up to oxygen and put cold rags on my forehead and neck. My lips got so swollen they hurt. They kept asking if I could feel it easing up and when I wasn't I started to feel panicky. Finally, after what seemed like forever it did start to subside.
After most of the symptoms went away and I could at least breath we had to mull over the decision as to whether to try and get me to finish that last chemo drug or just call it quits. After going over all the pros and cons we finally decided to not finish it. I got about a 1/4 of it in before I had the reaction.
Although I was relieved to not try it again and possibly have that same thing happen all over I feel concerned if that will interfere with the success of totally ridding me of the cancer. I asked them and they didn't seem to think at this point it would. When I was mulling over in my head and praying about it I kept thinking "well....we'll just get everyone to pray that God will continue to work in my body and since He's the ultimate healer I am going to be fine". So....I guess that is what I'm asking for prayer for....that the cancer is going to continue to be annihilated even with that last drug being less than normal.
Also, I was kind of disappointed about about my CA125 number. It only dropped to 23 from 25 last time. I realize this is still in the safe zone but I was really hoping to see that number down in the midget digits at this point.
And, the doctor decided to have me do the maintenance chemo. We are just waiting on some kind of approval. He said we won't know until we get the approval which drug I will get but he said regardless, there's going to be a world of difference on the side effects I will have.
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Veronica
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RE: Cancer Support Thread - 7/9/2010 10:40:23 AM
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IwillseekHim
Posts: 835
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That musta been quite the scare for you, Veronica! So thankful you were still at the hospital when the allergic reaction happened. Hope that by now you are feeling much, much better.
As always, praying for Deegan also.
Please remember Calamitykelagain. She went in for a masectomy a few days ago and has not come back on p/p forum to let us know she is ok. Thanks.
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RE: Cancer Support Thread - 7/9/2010 11:28:37 AM
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wfisaac
Posts: 299
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From: Tip of the Mitt
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Yes, I've been checking in the p/p forum periodically to see if there's been any updates on Calamitykelagain. I will continue to do so and will keep her in prayer.
Also continuing to lift Deegan up and praying he will be able to be home soon.
Right now I'm going through the intense muscle and joint pain that usually follows my treatments. Ugh....can't wait for it to pass. And hopefully today I will know if I get approval for the maintenance chemo treatments.
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Veronica
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RE: Cancer Support Thread - 7/9/2010 12:03:03 PM
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IwillseekHim
Posts: 835
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Veronica, my prayers are with you, sister. Sorry that you are hurting. Are you having to work today, too?
Calamity has just posted. She is home recovering. She is waiting for the path. report, please continue to keep her lifted in prayer.
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RE: Cancer Support Thread - 7/9/2010 3:50:29 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
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No, I don't have to work, thankfully. I really don't think I could. Hopefully this will be my last time of having to go through this much pain afterward. The drug I will be on for the maintenance is the one that causes the muscle and joint pain, but maybe without the combination of the other drug it shouldn't be as bad.
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Veronica
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RE: Cancer Support Thread - 7/16/2010 11:06:47 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
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Here's the latest on Deegan - he needs our prayers.
Thursday, July 15, 2010 3:23 PM, EDT
Lots of things have happened since I updated you all! He’s gone through his apheresis and completed his harvest in only 4 hours! Amen. We were prepared for this to have taken more than a day, possibly several days. Also, since his harvest was completed, his vas. cath. was removed last night with no issues or complications. So now he’s able to swallow better, when before he was having a hard time swallowing.
The next step is to do his chemo. This will be the same three chemo drugs and amounts as the last time, run over five days. So, we will be in here until at least Monday of next week. They are going to monitor his kidney function twice daily so they can stop the ifosfamide if we start seeing kidney issues (last time the issues didn’t show up until the chemo was over so this may be a moot point). Now, the hard part in all this is that while his kidney is functioning well in one way (the filtering), it’s still not holding onto his salts/electrolytes the way that it should. So, we face the very real possibility (probability is a valid word here also) that the ifos will cause irreprepable damage to his one remaining kidney and we’ll be facing more issues. ALL WE CAN DO IS PRAY. And take this one day at a time. So, your prayers that his kidney will remain functioning and even improve are much coveted by us at this time. I KNOW that our God works miracles- when there is no hope in humans, He is able to work and be glorified!
As to how Kyle and I are doing, well, we’re holding up okay. Whoever does the night shift here at the hospital is subject to Deegan’s waking us every couple hours to hold his urinal as he’s not able to hop out of bed and do his business due to the pain he’s in from the GJ tube. We expect to have the GJ inspected today and start using it, initially to supplement the TPN. He’ll be getting the TPN tonight, and we shall see what tomorrow brings in his test results regarding how effective things are.
Thank you, Janet for your donation in support of this site! Also, thank you Janelle for all your efforts at the basketball tourney on our behalf! That was a lot of work and folks amazed us with their generosity to us! I hope that you were able to get some rest that evening.
Thanks also to anyone else involved with that tourney work- I’m afraid I have probably not thanked folks who deserve mentioning, for which I apologize. Well, I have to get going so will end here. Thanks again! -Joy
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/16/2010 11:54:45 PM
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wfisaac
Posts: 299
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Thanks for the update, Lisa. I will continue to keep this little guy lifted in prayer.
_____________________________
Veronica
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RE: Cancer Support Thread - 7/22/2010 8:22:00 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Here's the latest:
Thursday, July 22, 2010 6:22 PM, EDT
Well, folks- I should know better by now, than to jinx our going home by saying anything about it. Deegan and Kyle had a miserable night, worse than MY night with Deegs. The enteral feeding was tried again, but Deegan ended up vomiting AND having diarrhea every half hour or so. It was bad. So, we don't know why he is having these issues, and we're waiting on the doctors to answer our questions and see what his path forward is. In the meantime, he's hanging out watching television and movies. Thank God that the Family Resource Center on the 12th floor has a fabulous selection of movies and playstation games for the kids.
They did a sample for C diff (24 hour test incubation time) so we're also waiting on that. Hoping it's not that- have to go research it on internet. Right after I go find some food. It's hard to leave Deegan when he's awake and apt to need help at any moment. Just wanted to get a quick update out there for all of you. Keep praying, please. This bump in the road has us stressed even more. Kyle and I both are starting to feel real fear regarding Deegan's health, so we're in need of uplifting. Thanks in advance, as I know that many of you will read this and immediately begin praying for us, for which I am immensely grateful! -Joy
Wednesday, July 21, 2010 4:10 PM, EDT
4 pm Update- sounds like we’re not going home today because of all the vomiting. They really want him to be tolerating a good rate on the enteral feeding. Sigh.
1 pm - We’re still waiting on an answer to the yeast contamination question. I’m training with our Lincare nurse on learning how to tube-feed Deegan so that we can do it once we’re released from here.
Last night was ROUGH. He was vomiting just about every two hours. Poor little man. He finally stopped around 6 am when they stopped the enteral feeding, then slept until about noon. We are attempting to determine if the feeding rate was what caused the vomiting or if it may have been chemo-related. I think that is what is holding us up on getting discharged. We also have to get a nutritionist in to determine his intake needs and such, so that we can take care of him properly at home. Lots to manage, as usual. I’m a bit brain-dead from last night, so apologize for this being disjointed. Kyle summed up our issues nicely, so I’ll not add to that. We are considering having him harvested elsewhere if the stem cells are found to be contaminated and we have to put him through that ordeal again. I pray sincerely that we do not. ALL his bones were hurting him from the marrow being worked so hard, he’s still got the bruises from the neupogen injections, and I can’t stand to see him hurting. The vas cath was ICKY.
As to the road ahead, much of the plan will become clear as time goes on and we watch how his body responds to the chemo. They’re clearly watching kidney function, and how the tumors respond to the chemo- if they’re shrinking or not. At least he won’t get so weak this time! It will probably take about three weeks from Monday for his neutrophil count to come back up, so that’s the time we’ll be waiting and watching, and developing plans for the next round. I’m struggling for balance on wanting to be back at work to save the time which has been donated in case things get REALLY bad, and wanting to just enjoy this time with Deegan. It’s already half-way through summer! Where did the time go? We had so many hopes for various fun family things to do, and have not been able to do anything. Just being home as a family has been a rarity, and we did enjoy those three days. Alright, enough whining out of me. Later, all! -Joy
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/28/2010 5:59:41 PM
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mutinywxgirl
Posts: 4412
Joined: 4/29/2005
From: St. Petersburg, FL
Status: offline
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Deegan went to be with Jesus at 455pm today. He was wrapped in his mother's arms. Please continue to pray for this entire family. I will post more as I get the information and am not trying to do this from my phone. Thank you all for your caring support during this ordeal. I'm also in deep grief for Joy. She is one of my dearest friends. Pray this does not rip apart her marriage.
.
_____________________________
When blood and water hit the ground.
Walls we couldn't move came crashing down.
We were free and made alive.
The day true love died. The day true love died.
Lisa is happy THE ROWDIES ARE BACK!
14 (go Tony!)
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RE: Cancer Support Thread - 7/28/2010 7:38:17 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
Status: offline
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Oh, Lisa. My heart is so sad to hear this. I know he is with Jesus and no longer suffering but the loss for those still here I know is great. I will be praying for his parents as they try to get through this. I pray that even through their grief that they will be able to grow closer to each other and not a part. I don't even really have the words right now but I will for sure keep them lifted up.
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Veronica
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RE: Cancer Support Thread - 7/28/2010 8:15:28 PM
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LibererlaFemme
Posts: 1307
Joined: 4/11/2005
From: PA, USA
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quote:
ORIGINAL: wfisaac
Oh, Lisa. My heart is so sad to hear this. I know he is with Jesus and no longer suffering but the loss for those still here I know is great. I will be praying for his parents as they try to get through this. I pray that even through their grief that they will be able to grow closer to each other and not a part. I don't even really have the words right now but I will for sure keep them lifted up.
Your words are great, Veronica. And lame as it is, I ditto all of it.
_____________________________
><> Pam
From the rising of the sun til the sun goes down, let the name of the Lord be praised!
< < my sweet Toby {1997-2010}
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RE: Cancer Support Thread - 7/28/2010 8:34:11 PM
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Ellie-Mae
Posts: 1452
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From: The EMPIRE state!
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Just found this thread today. Lisa, I am praying for your friend's family.
I am a cancer survivor. I had thyroid cancer... stage one. I have had two surgeries and two rounds of radiation with isolation. The last surgery was at the end of last November and then radiation treatment was in January. It hasn't been scary for me at all, but at times it has been overwhelming, and sometimes confusing. I hate how it disrupts my life.
Since I don't have my thyroid anymore, I am dependent on Synthroid (or however it is spelled). Lately I have been really struggling. I just don't want to take any more meds. I know that I need to and I can't explain why I don't want to, but I don't. So right now my thyroid levels are out of whack as well as my cholesterol. Does anyone else feel this way or have gone through something like this?
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Believe very little of others opinions of you, and believe less of your opinions of yourself. The only opinion that matters is that of your Creator, and He thinks you're to die for.
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RE: Cancer Support Thread - 7/28/2010 9:06:10 PM
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wfisaac
Posts: 299
Joined: 3/18/2007
From: Tip of the Mitt
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Welcome, Ellie-Mae,
I have a different kind of cancer (ovarian) and although my treatments have been different than you, I think I understand the frustration you are describing. I think when you said "I hate how it disrupts my life" kind of sums it up. It totally changes your life. Some of my friends will say "when you get back to normal......" and I try to tell them the definition of "normal" has changed. Earlier this month I did my last round of planned chemo but then my doctor suggested I do a year of maintenance. So the last few weeks I've been so focused on getting all that lined up and doing all the required tests and all and then today I get the call that they now have me scheduled for my first chemo of this new routine for next Thursday. I got off the phone and told my co-worker and as I was telling her I started crying. I really don't want to continue doing this. I do for the sake of being able to be cured...but my body doesn't want to go through that anymore. It's just now starting to feel human again. I was so focused on getting this accomplished I hadn't thought of the reality of how I'm going to feel for the next year. Ugh....
So...if I'm understanding what you're saying I think that's what you mean? You know you should for your good but you just don't want to deal with it. Right?
I do pray God would help you through this time of struggling.
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Veronica
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RE: Cancer Support Thread - 7/28/2010 9:50:49 PM
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LibererlaFemme
Posts: 1307
Joined: 4/11/2005
From: PA, USA
Status: offline
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My situation seems so minor compared to all these others. And my prognosis is "excellent". But, even so, there are life disruptions:
I'm taking Arimidex, and I was told I'd take that for the rest of my life.  Oh joy.
Also, my breast is misshapen, bruised underneath, discolored on top, and somewhat numb you-know-where. My radiation oncologist told me last week that, although some of it will heal with time, some of it I will have to accept as "the new normal". Fortunately, none of this matters much. I'm unmarried and intend to remain so. But still, there's that voice in my head saying "It's not fair!"
_____________________________
><> Pam
From the rising of the sun til the sun goes down, let the name of the Lord be praised!
< < my sweet Toby {1997-2010}
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