Prayer Request PLEASE

[XJ Wheeler]

Saw the doc again today and he decided to admit her for round four. That was at 12 noon, and after waiting for 3 hours with no word we finally were told they didn't know how long it would be. Understandably, because everyone is waiting for a patient to be discharged to clear that room. Anyways we went home, and i'm glad we did. Its 12 midnight now and we are finally headed there with a room ready.


We got to see another side of this today. They held up her doctors appointment so they could speak with us about the bills. Its way more than we can afford so we are trying to make small payments. But they say its not enough and will go to collections. Unless someone's got a winning lottery ticket it will eventually go against her credit. Oh well, thats greed for ya.



Ding, ding... Round Four!

[Brasscatz]

Ugh, greed indeed. You should've told them she was illegal, then you'll get star treatment and free care. The good news is that they are at least willing to continue treatment instead of holding off until paid up. They should at least recognize willingness to pay as much as possible whenever possible.

Don't worry Jake. You guys will make it with faith. When Lauren decided to quit her job and pursue a career in teaching we would've lost everything including our house if I hadn't been offered a higher paying position with a new company. We've scraped by on my check alone for a year and she got her first teaching job this year and her first paycheck yesterday. God works in mysterious ways and will not give you more than you can handle. No matter how it happens, God will help you through it.

[XJ Wheeler]

Ugh, greed indeed. You should've told them she was illegal, then you'll get star treatment and free care. The good news is that they are at least willing to continue treatment instead of holding off until paid up. They should at least recognize willingness to pay as much as possible whenever possible.

Don't worry Jake. You guys will make it with faith. When Lauren decided to quit her job and pursue a career in teaching we would've lost everything including our house if I hadn't been offered a higher paying position with a new company. We've scraped by on my check alone for a year and she got her first teaching job this year and her first paycheck yesterday. God works in mysterious ways and will not give you more than you can handle. No matter how it happens, God will help you through it.

Yeah, they said because the treatment had already been started they can't just not treat her. Although your guess is good as mine if it hadn't been.

That sentence "God won't give you more than you can handle" is one thing i've relied on a lot recently.

I bet you're glad to have both incomes now, living week to week isn't fun. Congrats, and good luck to her in following her passion.

[Brasscatz]

I didn't want to take away any spotlight from you and your family, just wanted to relay my testimony to "God won't give you more than you can handle", even though it's little stuff compared to yours. I'm still saying prayers for you guys. Let us know if there's anything we can do.

[XJ Wheeler]

I didn't want to take away any spotlight from you and your family, just wanted to relay my testimony to "God won't give you more than you can handle", even though it's little stuff compared to yours. I'm still saying prayers for you guys. Let us know if there's anything we can do.

And i didn't take it that way Jim, no worries. Everyone has something that impacts their life at times, both big and small, its still relative to them.

[xj4life2]

I think the bottom line of Jims statement is that God will take any situation and make it into something good even if though we can't ever see it comming. Our duty as Christians is to give him the praise honor and glory he deserves in the good and the bad times,trust me when I say the is a reason for all your going through and God will reward you in the end. He may bend you alot , but will never break you. His love and grace is beyond what we can comprehend. So have faith and continue to praise and glorify him in ALL things. I am and will continue to pray for your family that his will, not our will be done. God Bless !!

PS not really sure why I typed all this but I'm sure you or someone needed to read it.

[XJ Wheeler]

I think the bottom line of Jims statement is that God will take any situation and make it into something good even if though we can't ever see it comming. Our duty as Christians is to give him the praise honor and glory he deserves in the good and the bad times,trust me when I say the is a reason for all your going through and God will reward you in the end. He may bend you alot , but will never break you. His love and grace is beyond what we can comprehend. So have faith and continue to praise and glorify him in ALL things. I am and will continue to pray for your family that his will, not our will be done. God Bless !!

PS not really sure why I typed all this but I'm sure you or someone needed to read it.

Thank you and yes, may HIS will be done. Great to read!

Praise the Lord!

[XJ Wheeler]

They finished up the chemo this morning and she was discharged not long ago. Her levels should be on their way south in a few days.

She's been doing good, her swelling has subsided. Mainly some usual symptoms.

[XJ Wheeler]

Today was a long one. Normal labs and talk with nurse. She hasn't been feeling very well lately with fatigue, nausea, and more concerning shortness of breath. They decided to give her a blood transfusion (1 unit) just in case the trouble breathing was due to low hemoglobin. As well she has been having some swelling, which could also cause her breathing troubles. So they gave her a med for that. Later in the day she seemed to feel better, so that was great to see.

Upon a visual inspection last night during a dressing change we noticed the surrounding area around her picc line insertion site had some redness (very localized). Today we had them look at it to make sure its not infected. We were told to keep an eye on it.

[XJ Wheeler]

She got some platelets today. Going fairly well. She's had some more minor things going on and her blood pressure is still screwy. Otherwise no big complaints.

Praise the Lord!

[Brasscatz]

Otherwise no big complaints.

Praise the Lord!


Glad to hear, Jake!

[XJ Wheeler]

Still going well, she seems to have a bit easier time moving around the past couple days. Just finished up a blood transfusion as well as a some meds. Getting into the tricky period when her levels are bottomed out now, gotta be extremely careful.

[XJ Wheeler]

Been a while since an update.

Her levels have started to increase toward the norm again, although today she did get a unit of blood.

She is still swelling and have difficulties with her breathing. She has been put on a RX to relieve some fluid.

My grandmothers situation has taken its toll on her, both mentally and physically. Shes not really getting the rest she needs.

[Brasscatz]

That does get rough, sorry to hear that. You need to be careful too. If you don't get enough rest either, it can take a toll on you.

[XJ Wheeler]

That does get rough, sorry to hear that. You need to be careful too. If you don't get enough rest either, it can take a toll on you.

Believe me bro, it has. I have my own "issues", but i have to put those aside for now.

[XJ Wheeler]

She had another bone marrow aspiration done yesterday and we got the preliminary results today when she saw the doc. It showed her blast is up to 5%. He said we will have to wait till Friday to get more of the results back to know if she's still in remission. His words "50/50 shot".

If she has relapsed that takes her odds down significantly.

Please pray for good results.


This sucks.

[Brasscatz]

Definitely praying, bro

[Dredwolf]

Sending prayers...

[jdougn]

Thanks for the frequent posts that remind me to pray.

[Mudderoy]

Thanks for the frequent posts that remind me to pray.

When things are going well I forget to pray, when they are going bad, almost never.

[XJ Wheeler]

Turns out it was just God testing us.

The doctor said it is rare but apparently the machine that cranks out the preliminary results was mistaken. The final results showed a blast percentage of 3%.




Proverbs 3:5-6*
“Trust in the LORD with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths.”




I Feel Good Lyrics.wmv - YouTube


You guys be sure to have a great weekend.

[XJ Wheeler]

Okay, Update!

Last Friday the plan was to go all in for round five but her levels (mainly platelets) seem to be delaying in their recovery. Since she just had a good report on the bone marrow aspiration it should be alright. Hopefully, as they suspect, its just slowed a bit due to the marrow taking a hit each round plus maybe, stress. I think she's probably got that. Anyway, the new plan is go back Friday and see how its going. Although, as of today her platelets were just about the same as last week. So...

They've changed her blood pressure medicine because they think it was causing her legs to swell, which is one of the side effects. Its seemed to help.

She's actually been feeling pretty good despite everything. Thank God.

[Brasscatz]

Thanks for the update! I'm glad she's feeling pretty good! I'm on blood pressure meds too, though I've been lucky not to have any side effects

[XJ Wheeler]

Need more prayers, guys. This morning she woke up having horrible pains in her side and stomach. Also some difficulty breathing. So now we're on our way to the hospital to find out what's going on.

[Brasscatz]

Saying double prayers, bro

[4.3LXJ]

Sent one up too

[XJ Wheeler]

Thanks, guys.

So far she's been feeling a good bit better. Forgot to mention her blood pressure was really high earlier as well. There's been and EKG, X-ray, CT scan, and blood tests. Still no answers though. My assumption is they're thinking its cardiac, but doesn't seem like it is to me. Anyway, the cardiologists won't see her till tomorrow so we're here for the night.

[Brasscatz]

Very glad to hear she's feeling better. I pray for good news

[XJ Wheeler]

All the cardiology tests were negative and the cardiologists have cleared her. Now they're thinking possibly gallbladder problems, gallstones maybe. So, now she's getting a CT scan to see. She's still been feeling good, just really upset about my grandma (her mother). And, he o2 levels have been a little low so she's on oxygen when she sleeps.

[XJ Wheeler]

The CT showed possible fluid or inflammation. The cause is unknown. She's getting an ultrasound now to get a better look. Once the results are back we'll know more. She's still feeling good though.

[XJ Wheeler]

She got discharged today.

The surgeons came to talk with us. From what i understand they do believe there's something up with her gallbladder. They saw some thickening of the gallbladder walls. Not sure what causes this though.

The plan is to take the gallbladder out but not now since she's feeling okay. If she begins having symptoms again that changes it. But they want to wait till she's doing better to cut down on possible complications.

[Brasscatz]

Glad to hear she's doing better. My mother, her brother, her 2 sisters, and my own sister have all had their gallbladder removed. It's probably in my future too. Pretty much the only downside is intolerance to red meat, so hopefully it won't be too horrible.

Have they stated that she's still in remission? (praying)

[bluedragon436]

Glad to hear she is doing better, hope it continues to improve!!

[XJ Wheeler]

Thank you, guys. She's actually been having some pain during the night but seems to be subsiding. Hopefully it doesn't continue.

Jim- As of a couple weeks ago from the last bone marrow aspiration, she is still in complete remission. 3% blast and they said the microscopic residual test said she was clear as well. The doctors words were "deep remission".:thumbsup:

[XJ Wheeler]

Alright, so she saw the physicians assistant today and told them what's been going on. They have put her on a clear liquid diet for a couple days and then proceed to progressively add back in solids according to well, simply put, harshness. It is a trial to see if this will clear up. Her liver counts today signified gallbladder troubles as well, the p.a. saw that after second guessing it was her gallbladder. There will also be more tests done Thursday to follow up.

[XJ Wheeler]

Sorry for the delay on this update.

Thursday they repeated the ultrasound on the gallbladder, results look good. No more stones, but still some inflammation. She is now up to eating soft foods, and doing well with that.

We also had our first appointment with the stem cell transplant department. They do think she would be a good candidate for transplant. They have started looking for a match in the donor bank, and my brother and i were typed to see if one of us might be a "halfmatch" (a child of the person can be max 50% match but its only a possibility).

Friday we saw the doctor. Her platelets have finally risen to an acceptable to go for the next round, but her liver enzymes are somewhat elevated. They believe its due to the gallbladder issues but want to wait till next week to know for sure.

[Brasscatz]

I hear they can do miraculous things with stem cells... Still praying for you

[Dredwolf]

Sending up a prayer or three, they can do amazing things with stem cells, from what I have been reading.

[XJ Wheeler]

The stem cell transplant is also known as a bone marrow transplant. Basically they give higher doses of chemotherapy to wipe out as much of your original cells that they can. Then after a few days, transfuse the donors marrow in to hopefully started creating clean cells. From what I've heard and read it comes with great risk while also being a possibility of failure. Its not something i look forward to, nor and positive its a good idea but it is suppose to increase either the time in remission or chances of "cure" (if it takes).

[4.3LXJ]

Sent one up for you both

[XJ Wheeler]

Round five is underway! The chemo was started late Wednesday so that puts this round on course to finish up late Saturday. So far so good. Thanks.

[XJ Wheeler]

Finished up early last night. Apparently the doctor chose to lessen the doses this round. Would've been nice to have known that. Anyways, she got discharged a little while ago and we're heading home.

[XJ Wheeler]

So, its been that time of bottomed out levels for about a week. She's had two platelet transfusions and one blood. Actually, waiting on a platelet transfusion now. Been running extremely slow today cause of the holiday though, not enough workers on today.

For her, she's been well. Minor things here and there but this time of year helps bring spirits up.

Thanks for every prayer.

[4x4Dalton]

Still prayin for y'all bro.


Sent from my bulletproof iPhone using the Flapmyjaws app :)

[XJ Wheeler]

Thanks, Bear.

Finally got out of there, after TWELVE hours. At least there's some tasty leftovers in the fridge waiting for us.

[Brasscatz]

You can NEVER go wrong with leftovers ;)

[4x4Dalton]

Thanks, Bear.

No prob bro. One day when yer able come on by the shop I'm still here :)


Sent from my bulletproof iPhone using the Flapmyjaws app :)

[XJ Wheeler]

You can NEVER go wrong with leftovers ;)

Especially when its these kind of leftovers.:D


No prob bro. One day when yer able come on by the shop I'm still here :)


Sent from my bulletproof iPhone using the Flapmyjaws app :)

I'm still plannin on it. Hopefully i'll be accompanied by my jeep.;)

[XJ Wheeler]

Update time!

Blood levels have started to make the turn. So far her blood have stabilized, white cells have begun to rise and are near to normal range, and lastly the platelets seem to be leveling out but still low enough to need a transfusion today. Her platelets are taking the longest to recover, similar to the last cycle.

She's been doing well, spirits are okay. A lack of energy and some bone/joint pains are apparent and are believed to be due to the production of cells within her body.

Getting a little tough on her with the situation with her mom. Holidays are tough that way.

[Brasscatz]

Thanks for the update, Jake. I'm glad she's doing better! How is the situation with your grandmother going? Any better at all?

[XJ Wheeler]

Thanks for the update, Jake. I'm glad she's doing better! How is the situation with your grandmother going? Any better at all?

Thanks! I was just about to update on that too.

[XJ Wheeler]

Her platelets are finally starting to slow down on dropping, hopefully they'll make their way up soon.

She had another bone marrow aspiration done this week, so were surely hoping and praying for great results.

She's been having a lot of aches and pains in her bones and joints lately. Not sure why, she's had some in the past when her body started producing more cells (blood/platelets/etc) so i assume its just a more potent version of that.



Also, I've been at a bit of distress thinking on the possibility of the bone marrow transplant. Its just so risky, yet if successful, so helpful in continuation of remission. Still no word if there's a donor match. The doctor has said he recommends the transplant only if a great match is found, and if there either isn't a match or its just 50% he says to wait and use it only if she relapses. So, i ask you all for prayer for God to give us guidance and knowledge in helping us to make the best decision.

Thanks guys.

[4x4Dalton]

My thoughts and prayers still comin yer way Jake.


Sent from my bulletproof iPhone using the Flapmyjaws app :)

[BlueXJ]

Jake you and yours are in my prayers. God will guide you on the right path.

[Brasscatz]

Definitely saying prayers, bro. Thanks for giving us an update.

[4.3LXJ]

Been praying for both Jake.

[Dredwolf]

still sending prayers along for you and your family.

[XJ Wheeler]

Thanks, everyone. You guys are awesome!

[XJ Wheeler]

Got the bone marrow blast results today, and i am extremely glad to say it is down to 1%! So, continued remission!

Due to the sickness (probably a cold) the doctor has chosen to wait on round six, we come back next week to see then.

[Brasscatz]

Great news Jake! Keep updates like those comin!!!

[XJ Wheeler]

Last night out of the blue she started having chills, took her temp and no fever. But a little later, chills still going but started to get a low grade fever. This went on with aches and shortness of breath added for a couple hours till the temp got to 100.7 and she took some tylenol. The temp began lowering back to normal, as well as the chills, breathing, and aches went away.

Talked with the doctor, and she mentioned something about the possibility of a clot in her lungs. Although i don't see that being the case since she's been sick lately.

Tonight it seems to be happening again. Battling temp, chills, aches, pains, and shortness of breath. She says she doesn't want to go to the hospital unless it gets worse because of the funeral later today.

I tell ya, this sucks. I am glad its not happening when she's neutropenic (low counts). Hope it gets better soon.

[XJ Wheeler]

Yesterday, the physician assistant had her have a chest x-ray, blood cultures, and gave her a infusion of antibiotics. The last couple nights have improved, but still getting the mild fever for a short period. Her pains and aches have increased though, sometimes very bad.

Today, we got word the cultures showed she does have an infection in her blood. We have antibiotics for the next four days. We go back tomorrow, should get more information then.


Also today we saw the stem cell transplant people and found out she has 23,000 matches, its just a matter of finding the best one. So, that's good.

[Brasscatz]

Sorry to hear about the infection, Hope that gets better real quick. 23,000 matches? DAMN! That's great! Can't wait to hear more good news!

[XJ Wheeler]

Not very good news. She's back in the ER. During the night she had another of the episodes like nights past but this one came with a 101.7 temp. Waiting in a room now.

[Brasscatz]

Damn, I'm sorry bro. Sending up some prayers for you guys bro

[4.3LXJ]

Prayers sent

[XJ Wheeler]

Thanks, fellas.

They ended up admitting her and stuck us in a small room with no bathroom, toilet, or bed for visitors.

[4x4Dalton]

Prayers and thoughts bro headin y'all's way


Sent from my bulletproof iPhone using the Flapmyjaws app :)

[XJ Wheeler]

Today they say she has e.coli. Wonder how that happened. Good news is she's feeling better, no fever/chills/trouble breathing. Although her pain is still hit and miss.

Thanks for prayin.

[Brasscatz]

Glad to know it wasn't something directly related to her other stuff :). Sad to know that she's not feeling great :(

[XJ Wheeler]

Just discharged a bit earlier, woohoo! With IV antibiotics and she's doing well. Her pains are still there sometimes, but i believe mainly localized to her left arm.

[XJ Wheeler]

So the plan today was to go in for round six, but her liver enzymes are quite elevated. They're thinking different antibiotics threw them off. Gonna give it a few days to keep an eye on them before continuing.

Also, i don't know why i haven't put this up yet. Guess i wasn't sure where to put it so i'll put it here. One of my second cousins passed away last weekend, she had been battling breast cancer for a while. She was doing good but got and infection and they said she went into cardiac arrest. I wasn't really close with her, but she was one of the only extended family that i actually knew. But more so, my mom had been talking with her because they both were going through something similar and i guess my mom felt like she could talk with her about a lot of stuff. Anyway, asking for prayer for this.

Thanks guys.

[xj4life2]

Prayers sent for all

[4.3LXJ]

Sent one up

[4x4Dalton]

Prayers headin y'all's way bro


Sent from my bulletproof iPhone using the Flapmyjaws app :)

[Dredwolf]

Jake, prayers sent.

[Brasscatz]

Sorry to hear about your cousin, bro. I know it's nice to have somebody to talk to that's going through similar stuff. I know there's got to be some online forums or support groups that your mother can join and talk to people in the same situation. She can even make some lifelong friends on there too.

Sending them up for you as always, brother. I sure hope she gets over this real quick.

[XJ Wheeler]

Okay, update!

They had taken her off one of the antibiotics, and her liver enzymes are returning to normal.

But... Today they threw us a major curve ball. The doctor informed us that they have found a 14 out of 14 match (best possible match) for the bone marrow transplant. And because of this new information he decided to nix round six all together. :shocker: So, the new plan is get prepared and go through all the requirements (insurance requirements) to go to bone marrow transplant in 4-6 weeks.

:confused:

[Brasscatz]

Great news Jake! So happy to hear that a match that good was found! Things are looking up!

[XJ Wheeler]

Great news Jake! So happy to hear that a match that good was found! Things are looking up!

Yep, a sign to go for it for sure. And even the doctor had said not to do it if it wasn't a really good match. Just, its scary cause it comes with a lot of risk. Gonna have to leave that with the Lord though.

[Rayburne]

So happy to hear your Mother has a marrow transplant that's such a great match. Our prays go out for her.

[XJ Wheeler]

Thanks everyone!

The testing has commenced, today was a carotid doppler, blood tests, some breathing tests, and a mammogram. More tomorrow.

[XJ Wheeler]

More tests today, including a bone marrow aspiration and biopsy. Hopefully will no the results Friday. Its been three months since the last chemo, so hopefully she's still in remission. This is the longest she's gone between rounds.

[xj4life2]

:pray:

[XJ Wheeler]

So, for the past few weeks I've said some on how her left arms been hurting. It still is, and been getting worse with even radiating into her chest and back. Today they did a x-ray and ultrasound to check the picc line and also for a clot.

Also, she's started to second guess transplant. I understand her hesitance, but i just can't see passing up such a great match.

Every prayer is truly and GREATLY appreciated, so i thoroughly thank you guys. May the Lord bless you all!

[Brasscatz]

I hope they figure out that arm pain. Prayers are going up for you guys bro

[XJ Wheeler]

So the the ultrasound showed no signs of a clot, but they did another xray yesterday on her arm and shoulder. We don't have a lot of info on it yet, and they said she'll need a mri to know more, but they called late last night and reported something's wrong with her rotator cuff and some avascular necrosis as well. Time to do some research.

The results came back on the bone marrow biopsy, still in remission! 2% blast with no signs of residual disease! WOOHOO!

She is still undecided on transplant.

[Brasscatz]

Great news Jake! Rotator cuff? She wasn't a fast pitch softball pitcher, was she?

[XJ Wheeler]

Great news Jake! Rotator cuff? She wasn't a fast pitch softball pitcher, was she?

Lol, nope. Just not one who sits around much.

[XJ Wheeler]

So, last week they did a ct scan angiogram to check on the aneurysm. And today, we saw the doctor for the results. Looks to be a tiny amount smaller. Whew, only one other ct that had been done, so we didn't know its status until now. Thank God.

Also, there is a mri planned for Wednesday to get a better look at her arm.

[Brasscatz]

Glad to hear that is smaller Jake! keep us updated I love hearing good news!

[XJ Wheeler]

So, she backed out of the mri that was scheduled but she has since done an open mri. Hopefully we will get the results Friday.

The donor for the transplant that they had has chosen not to go forth with donating. So, they are trying to secure another and believe they have found a good one. But, my mom has become overwhelmed by how fast everything is moving and fearful of the transplant so she's kinda slowed the process by delaying it.

[Brasscatz]

So, she backed out of the mri that was scheduled but she has since done an open mri. Hopefully we will get the results Friday.

The donor for the transplant that they had has chosen not to go forth with donating. So, they are trying to secure another and believe they have found a good one. But, my mom has become overwhelmed by how fast everything is moving and fearful of the transplant so she's kinda slowed the process by delaying it.

I can't believe they backed out! That is sooooo wrong! :mad: If you agree to be a donor, and you have the chance to really, truly help somebody... you shouldn't get to "back out". :bang::bang:

[XJ Wheeler]

I can't believe they backed out! That is sooooo wrong! :mad: If you agree to be a donor, and you have the chance to really, truly help somebody... you shouldn't get to "back out". :bang::bang:

I totally agree, but it wasn't meant to be. Must have been for the best.

[XJ Wheeler]

Well, i thought it would be tomorrow but i was mistaken.

Yesterday marks the one year anniversary of when my mom was originally hospitalized for anemia, only to later learn of the Leukemia. After five courses of chemo, many setbacks, and numerous prayers i am very glad to have seen the day come and pass.

Looking over this thread has brought me to tears. As much as she's gone through, not knowing the outcome.

Today i sit across from her at home. One of the many important things i worried i wouldn't be able to do much longer. And with remission, no less.

I don't know what will come down this winding road but i'm sure we will not be at it alone.

I deeply appreciate each and every thought and prayer. You guys don't know what it meant through the hard times.

Here's to another year! :happy0180:

[nateyz2000]

Well, i thought it would be tomorrow but i was mistaken.

Yesterday marks the one year anniversary of when my mom was originally hospitalized for anemia, only to later learn of the Leukemia. After five courses of chemo, many setbacks, and numerous prayers i am very glad to have seen the day come and pass.

Looking over this thread has brought me to tears. As much as she's gone through, not knowing the outcome.

Today i sit across from her at home. One of the many important things i worried i wouldn't be able to do much longer. And with remission, no less.

I don't know what will come down this winding road but i'm sure we will not be at it alone.

I deeply appreciate each and every thought and prayer. You guys don't know what it meant through the hard times.

Here's to another year! :happy0180:

Amen bro, amen again

[Brasscatz]

Cheers bro! It has been a battle and the power of friends, family and prayer is unstoppable! We're always here for you bro

[XJ Wheeler]

Today, while i was trying to cut my fenders, i was quickly notified something was up. I got inside and she said she had lost part of her vision in her right eye. Seeing colors too. We monitored her blood pressure, and it finally let up a little more than 30 minutes later. She didn't want to go to the hospital so we kept a close eye on her. So far its gone well. She's had something similar (Aura, I've had these as well) happen for several years periodically, but not like this and not this bad. Hope this never happens again.

[Brasscatz]

That's really scary Jake... a good friend of ours has had this happen to her twice. Both times she was in the hospital and it ended up being some sort of aneurism. Today she is fine. I don't want to scare you guys, but I don't know if that should be taken too lightly... if it persists, she needs to go in. Saying a few prayers for you guys

[XJ Wheeler]

I agree. And we do know she has an aneurysm, but they said if anything bad ever happened with it she would have a headache worse than anything she's ever felt before. She did have a headache but it was very slight. She's had something else happening on and off since. Either a line or spot traveling, right eye only. But she says its not as bad as the other.

[XJ Wheeler]

She has Leukemia...

What a difference a year can make. Friday is the "anniversary" of the official diagnosis and the above post. I can still remember the conversation... the feelings... the stress. But now i can say (hopefully forever) its all in the past... just a plethora of bad memories. And even though i'd like to forget much of this past year i wouldn't trade it for anything. Its brought my family closer than ever, taught me to be a better man, and shown me what's important. Don't take any thing, and especially ANYONE for granted. We get busy in life, find our own things to focus on, and lose time. Time that is so precious. Everyone on here has SOMEONE that loves them, or that they themselves loves. Keep em close, because you never know what tomorrow holds. Give them a hug, set down for a conversation, spend that precious time that you DON'T GET BACK.

I do have a few things to report on as well.

After all the time to think and pray on it, she doesn't feel good about the bone marrow transplant and has decided not to go through with it. Since she's in a good place and no one but God knows the right choice it must be the Lords will. So now she goes to what's called "watch and wait". We watch her blood levels and general health to make sure she stays in remission. The doctor says with this type of leukemia if she's is going to relapse it is more likely to return in the first two years of remission. So, i assume it will be that long till she doesn't have to be "watched", but that's only an assumption.

They haven't found a cause for the vision loss she had yet, but more tests are scheduled. And she hasn't had it happen since.

She had a physical therapy assessment done for her arm, which is STILL hurting, and general weakness. Originally the insurance said they don't cover outpatient physical therapy, but the PT department conversed with them. Either because of a new policy or a special program (we were told two stories) it IS going to be covered. That starts next week i believe. It wouldn't have happened otherwise at $800 a week for two visits.

[JTsXJ87]

Wow, I just read up on all this stuff that's been going on with your mom. Couldn't imagine what it would be like to see my mom go through all that stuff. Just wanted to tell you that you can include me in on your prayer team. It's good to know that there is a prayer circle around here I can tap into if I happen to need one. <*>><

[Brasscatz]

Thanks for the update Jake, and happy anniversary! Definitely happy since she's in remission ;)

[XJ Wheeler]

Thank you guys very much!

Jeremiah, these guys have been an unbelievable source of support. You can count on kind words and prayers from us. ;)

[XJ Wheeler]

Been a lot going on.

Her blood pressure has been somewhat higher lately, so the cardiologist has changed her meds for it, and her cholesterol tested high so she's now on a medication for that too.

After that episode of vision loss they did another ct scan on her head. It showed the aneurysm to be slightly larger at 7.3mm. Since then she's seen the neuro surgeon who says to do another ct scan from a different machine to get another image in case its showing different on the other ct. But if it shows that it has in fact grown, he says its a bad sign and would recommend surgery.

Please pray. I don't want her to have to go through brain surgery.

[Brasscatz]

Sending prayers up bro.

[4.3LXJ]

Prayer sent bro

[XJ Wheeler]

Thank you all greatly!

Today she had a bone marrow aspiration done. Should get results in a few weeks on the blast count and the rest of the disease. Been about six months since the last chemotherapy, so hope all is well.

[XJ Wheeler]

Update!

The second CT scan to look at the aneurysm was done last week. Thankfully and amazingly it showed the aneurysm to be virtually unchanged from before. The last scan that showed it to have grown must have been wrong, or just a poor image. Just another test, and to drive my blood pressure up some more. The neurosurgeon said he wants to see her back in a year, to which she replied "Lets make it six months". The doctor also said they had an analysis of the aneurysm that showed the risk of rupture for hers is 2.5% for 5 years. That's low, according to him.

We meet with the Leukemia doctor about the bone marrow tests Wednesday, so be sure i'll get a report up then.

Therapy is still continuing but her allowed days from the insurance is coming to an end, so we'll see what happens.

[Brasscatz]

Thanks for the update! Glad to hear it's not bad news :D

[XJ Wheeler]

Thanks for the update! Glad to hear it's not bad news :D

Yeah, i still count it a win. :D

[XJ Wheeler]

I promised to post the good news, so...

2% BLAST! No sign of DISEASE! Doctor words "Highest form of remission"!

Just in time for the 1 year milestone of initial remission on Friday.

Praise the Lord!

[bluedragon436]

Glad to hear it Jake!!

[4.3LXJ]

Good to hear. PTL

[Brasscatz]

SWEET!!! Prayers have been answered!!

Sent from my brain using this new Galaxy tablet thingy

[XJ Wheeler]

Back in the ER. She's been feeling a little under the weather for a couple days with a cough, nasal stuff, etc. But today she's been having some abdominal pains and tonight chills with a fever of 101.6. So here we are again. I'm surprised this stuff is still happening this long after chemo.

Sent via messenger pigeon - i talk, he types.

[bluedragon436]

From being around many folks that have gone through similar fights and treatments... it is actually fairly common to have those conditions/side effects off and on for a bit after the Chemo... My father is/was a ho****e chaplain, and I know he says it is sometimes hard on the family as well as the patient to have to deal with the discomfort and such.. but in time it will pass... Will continue to keep her in prayer, either way!!

[XJ Wheeler]

From being around many folks that have gone through similar fights and treatments... it is actually fairly common to have those conditions/side effects off and on for a bit after the Chemo... My father is/was a ho****e chaplain, and I know he says it is sometimes hard on the family as well as the patient to have to deal with the discomfort and such.. but in time it will pass... Will continue to keep her in prayer, either way!!

That makes sense, with as much as her body's been through. Thanks a lot bud.

[bad luck]

Best Wishes for your mom. If I was in your area I would go and donate a pint of blood, I think I'll do it anyway.

[XJ Wheeler]

Best Wishes for your mom. If I was in your area I would go and donate a pint of blood, I think I'll do it anyway.

That's awesome, thanks Robert! By the way, there is a huge shortage of platelets. Blood cancer patients have to have platelet transfusions to make it through treatment. The two biggest problems with patients going through treatment is infections and continuous bleeding. For infections, well, you can't give some of them anything to boost the white cells. Just have to be extremely diligent when it comes to germs. But for bleeding you get platelet transfusions. Its EXTREMELY important for these patients to get the transfusions, otherwise they would probably bleed out. Its so bad they've had to give her small transfusions due to lack of supply. Plus you can donate platelets more often. Trust me, you will literally be helping someone stay alive.

[XJ Wheeler]

After some debating the ER doc did decide to admit her, he actually at first was making plans to discharge her but i guess something changed. So far the fever, chills, and pains have subsided. They did a couple ct scans, one came back good, the other still waiting. She seems pretty tired but its hard to tell if that from being up most of the night or something else.

Thanks for the thoughts and prayers.

[Brasscatz]

sending some up right now bro

[XJ Wheeler]

Turned out to be a blood infection. Not sure on the specifics as the results to the cultures aren't back yet. Overall she's been feeling better but a few things linger. Her oxygen saturation is a bit poor. Getting well within the 80s when sleeping or exertion. Also, her heart rate is somewhat low. Its nothing new but comes to light more when she's in the hospital. And her blood sugar has been kind of out of whack. They are doing a test this morning to see how it has been for the last month to tell if she's diabetic. Hopefully not, and it was just the steroids they gave her to help her lungs. All she has to deal with is enough.

[Brasscatz]

Sending prayers bro. I've never heard of a blood infections, but it doesn't sound fun :(

[XJ Wheeler]

This makes her fourth time to have it. Its a good thing her counts are up, otherwise it would have been much worse.

[Jeeplover88]

I've spent the last hour reading this thread from the beginning and I must say, your mom is one strong woman. You are a good man (and your brother I'm sure) for taking such good care of her. 3 of my close friends have been diagnosed with cancer recently; I can't completely say 'I know what you're going thru' but I do understand the stress that comes from seeing a loves one go through the healing process.

Sending healing and positive thoughts to you and your family from L.A. and continued healing to your mom :o)


Sent from my iPhone using Tapatalk

[XJ Wheeler]

I've spent the last hour reading this thread from the beginning and I must say, your mom is one strong woman. You are a good man (and your brother I'm sure) for taking such good care of her. 3 of my close friends have been diagnosed with cancer recently; I can't completely say 'I know what you're going thru' but I do understand the stress that comes from seeing a loves one go through the healing process.

Sending healing and positive thoughts to you and your family from L.A. and continued healing to your mom :o)


Sent from my iPhone using Tapatalk

I thoroughly appreciate the kind words and you taking the time to read through all this. I am sorry your friends have had this tragedy brought upon them as well. Its a long, tough road but a positive attitude goes a long way. I'll admit i had my time down in the dumps but the key is not to stay there too long.

Thank you for the good message. I'll be sure to pray for your friend's healings as well.

[XJ Wheeler]

And good news, she's been discharged and we're at home tonight. We had IV antibiotics delivered and an oxygen machine (i forget the name of it) as well.

A couple days ago we got the report back on the infection. Its some rare type "Roseomonas" that is apparently easily treated.

She also had to have her line (its like a picc) replaced the other night. Still sore where they stitched the end.

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

Couple of updates.

Her picc line has finally been removed for good. They aren't drawing blood much anymore and its a risk for infection, so GOOOOOODBYE! First time in 15 months not to have a line sticking out of her.

They did a test that looks at the last few months to determine if she's become diabetic. And the results told the truth. She has type 2 diabetes now. Although they said it steroid induced and hope treated with diet and exercise. So she has 3 months till they do another to shape up.

Today, her blood levels look better than they have in over on and a half years when all this started.

And right now she's waiting to have another bone marrow aspiration done to make sure of remission.

Sent via messenger pigeon - i talk, he types.

[Brasscatz]

Great news! Thanks for letting us know bro!

[bad luck]

I am glad she has the line removed, that must be a relief. I really wish you and your family the best.

[XJ Wheeler]

Jim, you know it bro! :D

Bob, it really feels like a big step toward getting back to normal. She always felt odd about having it and it was quite the hassle for her too. She couldn't get it wet so you can imagine trying to keep a part of arm or chest from getting even moist for over a year with two 100° summers in there. Plus since the insurance stopped paying for us to have bandage kits at home we either could wait at the hospital for hours to have them change it or do it ourselves to the tune of $50 per bandage kit, and they're to be changed every week or when they get wet (if before the week timeframe) And... $30 a month for flushes. So yes, a big relief.




Appreciate everything guys!

[XJ Wheeler]

Great news! The bone marrow results show 1% blasts!!! The lowest we've seen yet! No residual disease!!! I love getting results like these. Her blood levels continue to improve still and her therapy has helped make nice strides in helping her arms.

Sent via messenger pigeon - i talk, he types.

[Brasscatz]

Happy dance!!!!!

[XJ Wheeler]

Happy dance!!!!!

Rofl!!! :bacondance: :bacondance: :bacondance: :bacondance: :bacondance:

Sent via messenger pigeon - i talk, he types.

[bad luck]

I am so glad that your mom's results are so positive. Wishing her a speedy and full recovery.

[XJ Wheeler]

To change things up a bit some not so great news.

Today we met with the leukemia doctor for the monthly visit and go over the bone marrow results. He told us there was an abnormal chromosome found in the deeper study of her bone marrow. It may be nothing, although on the other hand could mean the leukemia is coming back for round 2. Another bone marrow aspiration is set for Tuesday to confirm, or deny it.

So, once again i'm asking for prayers. This would be devastating but whatever happens i know we will get through it!



Sent via messenger pigeon - i talk, he types.

[NW99XJ]

My thoughts and prayers are with you and yours buddy.
Hang in there!

[Brasscatz]

Prayers are with you bro...

[4.3LXJ]

Prayers with you and mom

[XJ Wheeler]

Thanks a ton guys! We got the bulk of the results... except that one noting the chromosome. We will see him again next friday to get that one.

I didn't want to post this before i knew but earlier in the week she had a blood draw and it showed a significant drop in hemoglobin (blood, basically) which is what was her problem in the beginning with the leukemia. So getting that back really concerned us, and surely and deeply placed that feeling feeling in the pit of my stomach. But... once again i've been proven silly in worrying. The blasts still show the great 1% with no other signs of disease, as well as her hemoglobin coming back up! Thank God!!!

Now, in further talks with the Dr, if i got this right, he believes if the results still show this abnormal chromosome it wouldn't be the original disease returning. But rather, a new secondary leukemia caused by the treatment... like breast cancer patients. If you've heard of that before.

Anyhow, we still hope this is nothing and can continue to that 2 year remission mark! Please continue the prayers!



Sent via messenger pigeon - i talk, he types.

[Dredwolf]

thoughts and prayers sent. They have made great strides in many treatments.

Always keep up hope.

[XJ Wheeler]

This is exactly the thing i had hoped not to have to post.

The nightmare continues.

We got a call from the doctor this morning. He said the results were back and the problem is still there. He wants to see the pathology report to see if its the same cancer or another like i mentioned previously.

So, the plan is to head for bone marrow transplant with the possibility of a round of chemo before. It will be several very hard months coming up.

:(

[Brasscatz]

Oh no bro.... I'm so sorry to hear that

[XJ Wheeler]

Well things have been different. More results came back showing the abnormal chromosome has lessened and that got her questioning the bone marrow transplant. But the MRD study, which is a deep study of the marrow, shows a small amount of (if i got the spelling right, i don't know) myeloblasts. Which is another bad sign for the disease returning. But the kicker is they don't think its the same disease. The report says it doesn't have the same characteristics as the previous disease. So now they believe its either AML or MDS (Myelodysplastic Syndrome) which i believe is a precursor to leukemia. But its all pretty much the same type of disease with the same ultimate treatment. The doctor for the transplant said 10% survival without doing anything and 40-50% with the transplant. So, she reluctantly made the decision to go for the transplant...

Now, monkey wrench! Today we saw the doc again to give him her decision. So he walks in the room, says hi, and goes right into another surprise. Turns out Monday he learnt of a "very cutting edge" drug, er, vaccine actually he wants her to try. Its on a trial basis for patients exactly like her... In remission of AML leukemia, but showing signs of an imminent relapse. Now, this drug has been tried on other types of cancer, but they've now moved to trying on AML victims. So, only three people have received it and that only started just a few weeks ago. So there's not much data, experience, info on it yet but what is there is promising. The three other candidates had relapsed, then received the vaccine and their disease has stabilized. But again, it hasn't been much time to know what's gonna happen down the line. So far no side effects, won't hinder future treatment should she need it, and it shouldn't effect her blood levels. Now, they are going to test her blood for a "marker" that will make her eligible or not. They said its a 50/50 on whether she'll have the marker. She is scheduled to have the blood drawn for that on Tuesday and they said it will take five days to know the results. I don't even know what to think anymore, we've been tossed back and forth too many times to have full enthusiasm anymore.

Other than that...

Her blood levels have been dropping/fluctuating a bit. Hemoglobin 13.6-12.7-13.2-12.4. Don't know if its normal fluctuating or an effect from the disease.

Her allowed therapy visits for her arm have ended, and no approval for more from the insurance.

The test to check the last few months to prove/disprove if she's diabetic was done and received... She is type 2 diabetic, although they said its not very bad and doesn't need to be dealt with right now since she has so much going on currently.

That's what i got...

[4.3LXJ]

Prayers are with ya buddy

[Brasscatz]

Wow bro, that's a lot of flip flipping stufffor you guys. I think the good news is that so far they are wanting to try the new medicine instead of telling you about it and not letting you have it. I can only imagine the stress you guys are going through... prayers are still with you bro. Let me know if there's anything else I can do for y'all

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

[XJ Wheeler]

Thanks guys. Yeah, the stress level is pretty has hit a higher mark. We are just trying to sort of block it since there's really nothing happening right now. And we can't do anything more at this time, so with just waiting on them we're just going to not think about it as much as possible for the moment. Just trying to stay positive. He's always got a plan.

[XJ Wheeler]

Shoulda known it would be too good to be true.

The insurance has denied the application for the trial vaccine because its experimental. The docs said insurance companies usually always approve stuff like this when its relapsed disease, not hers. They may or may not appeal it, we haven't gotten a straight word yet. And they won't tell us if she had the blood marker to see if she could even do it.

Most likely we're back to scheduling for the transplant... Will know more when we see the doctor this Wednesday...

Sent via messenger pigeon - i talk, he types.

[Brasscatz]

That's..... worth many, many words that I can't say on here. I have a feeling that Obamacare is forcing insurance companies to save every single penny that they can while they can. Further proof that Obamacare is screwing the people it should be helping. I will continue to say prayers for you guys bro. You can count on that for sure

[XJ Wheeler]

That's..... worth many, many words that I can't say on here. I have a feeling that Obamacare is forcing insurance companies to save every single penny that they can while they can. Further proof that Obamacare is screwing the people it should be helping. I will continue to say prayers for you guys bro. You can count on that for sure

Thanks bro.

I have no way to fathom how they can do this to people. This literally could be the cure to cancer and the insurance is selfish and doesn't have any real conscious to how this could help... even for them. They can't even see how this could prevent them from having to pay for chemotherapy treatment, which in my moms case is probably well over $1 million to date. And the somewhat comical part is they won't approve this, even with the company doing the trial paying for the drug... is they approve the transplant which for the type she's up for is just over $1 million.

How does any of it make sense? I. DON'T. KNOW. And never will.

Sent via messenger pigeon - i talk, he types.

[4.3LXJ]

Be glad this is now. If she is 76 after the first of the year, all she would get is comfort care with cancer. At 70, if it is expensive, too bad

[XJ Wheeler]

Be glad this is now. If she is 76 after the first of the year, all she would get is comfort care with cancer. At 70, if it is expensive, too bad

Ya know, that, shows exactly how much our government cares for its people.

But yeah, that and the fact she can handle treatment better are two very good reasons.

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

Met with the doc again. And once again a loop we get thrown through.

Her blood did in fact have the marker to be eligible for the vaccine. And have found out the team has appealed the denial for the experimental drug... but not high hopes for approval. Will probably know in about two weeks.

Also, her blood levels are doing well. Seems to be fluctuating (i suspect) as they would normally.

Sent via messenger pigeon - i talk, he types.

[Brasscatz]

God, I hope they approve it this time bro

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

[XJ Wheeler]

God, I hope they approve it this time bro

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

Yes, if its the Lords will. Ya never know, thats why its experimental. But either way i don't like the insurance playing God.

[XJ Wheeler]

Insurance denied the appeal too. Back to the transplant plan.

Sent via messenger pigeon - i talk, he types.

[Brasscatz]

Insurance denied the appeal too. Back to the transplant plan.

Sent via messenger pigeon - i talk, he types.

:bang: :bang: :bang: :mad0090: :mad0090: :mad0090:

I swear... Obamacare had something to do with this crap. I'm so sorry bro

[XJ Wheeler]

Things are in motion and the dates are set.

She's gonna be getting a multitude of tests for a couple weeks. Including getting a new picc line put in, and chemotherapy being put into her system to set the amount she can handle for transplant.

She is scheduled to be admitted February 4th and given the new bone marrow on February 12th.

We've been prepping for the long stay. Typically, with this procedure, we will be in hospital for about a month. This isn't like previous times either. We will leave the room very little and supply our essentials accordingly. Germ suppression is key and this is the main reason for such a strong approach.

After she shows signs of the bone marrow engrafting she will be allowed to leave, but not to go home. We have to find a place to live within minutes of the hospital for around two months, it is require of transplant patients. So, finding one isn't easy... or cheap. There is a hotel associated with the hospital and only allows patients and family to stay but is $5k a month. There are other options for less but are booked for four months in advance typically.

My brother and myself will be with her throughout every step, and hopefully be able to go home every so often to check on things.

If i could i ask for prayers for her. She's been through several surgeries, had tumors, two hard pregnancies, and this may be the hardest thing she will ever go through. Also, for us to have a place to stay after she can leave the hospital.

She had another bone marrow aspiration done last week, to make sure she's still technically in remission. Otherwise she won't be able to do the transplant. Not sure but i believe we'll get the early results Friday.


........

[OneArmArrowSlinger]

I will be praying for God's will in your lives and the strength to handle His plan, whatever it may be.

[XJ Wheeler]

I will be praying for God's will in your lives and the strength to handle His plan, whatever it may be.

Thanks Jonathan. I always have to remind myself His will is far greater than what i THINK i want... because He knows the whole story.

Sent via messenger pigeon - i talk, he types.

[OneArmArrowSlinger]

To me, thats something I think we all struggle with, its human nature to think of what we want vs. God's long term plan. Heck, I don't understand all the reasons why I was hurt the way I was BUT my relationship with the one that matters has grown stronger and if thats the ONLY reason, my suffering is just; and maybe, just maybe, it can be used to lead at least 1 person to Christ, for that I'd go through it all again. May God's blessings and love shine upon you guys right now and regardless of what comes I know he still deserves the praise and glory!

[prcjeep]

Prayers are with you Jake, which hospital are y'all going to be at, I can spare some time to call/look for places for y'all.

[XJ Wheeler]

To me, thats something I think we all struggle with, its human nature to think of what we want vs. God's long term plan. Heck, I don't understand all the reasons why I was hurt the way I was BUT my relationship with the one that matters has grown stronger and if thats the ONLY reason, my suffering is just; and maybe, just maybe, it can be used to lead at least 1 person to Christ, for that I'd go through it all again. May God's blessings and love shine upon you guys right now and regardless of what comes I know he still deserves the praise and glory!

Very true, and I've seen good things come out of all the things have happened in this past two years. My family has never been closer, and we're back in church twice a week.



Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

Prayers are with you Jake, which hospital are y'all going to be at, I can spare some time to call/look for places for y'all.

They supply us with a list of plenty of places to call that offer places for patients and such, so its more so on their end now. I thoroughly appreciate the offer and thought though Patrick! She's gonna be at MD Anderson downtown/med center.

Sent via messenger pigeon - i talk, he types.

[OneArmArrowSlinger]

Very true, and I've seen good things come out of all the things have happened in this past two years. My family has never been closer, and we're back in church twice a week.



Sent via messenger pigeon - i talk, he types.

Thats awesome!!!

[abebehrmann]

I'll be praying for your mother and your family.

This is also a good time to remind everybody ages 18-44 to go to bethematch.org and sign up for the marrow registry. It only takes a couple minutes, they mail you a cheek swab and you send it back at no charge to you. Less than 20 minutes of your time could put you in line to help save someone's life.

[Brasscatz]

Thanks for the update, Jake. You know you can always count on me for prayers. I got to thinking after reading what you and Jonathan were saying. I know it sucks that the insurance company denied that new experimental drug, but maybe that was God's way of saying that it wouldn't have worked for your mother, and that this transplant is her best chance. Maybe, it's a blessing in disguise.

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

[XJ Wheeler]

I'll be praying for your mother and your family.

This is also a good time to remind everybody ages 18-44 to go to bethematch.org and sign up for the marrow registry. It only takes a couple minutes, they mail you a cheek swab and you send it back at no charge to you. Less than 20 minutes of your time could put you in line to help save someone's life.

Thanks a ton Abe! That's great information, and it really is needed. I see so many people going for this transplant, and i'm sure its on the rise. One person we talked to got their new marrow from a donor in Germany. It just goes to show you that the more people that sign up the better the chances. Sadly there's people that haven't gotten a match yet and the transplant is really the best option for those who need it.

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

Thanks for the update, Jake. You know you can always count on me for prayers. I got to thinking after reading what you and Jonathan were saying. I know it sucks that the insurance company denied that new experimental drug, but maybe that was God's way of saying that it wouldn't have worked for your mother, and that this transplant is her best chance. Maybe, it's a blessing in disguise.

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

That's the answer i came up with. And with it being experimental, ya never know what can happen. So, i do believe it was for the best.

Thank you Jim, its always appreciated too!

Sent via messenger pigeon - i talk, he types.

[4.3LXJ]

Sent one up yesterday for her Jake. That made it farther than the post saying I did though :D

[XJ Wheeler]

Sent one up yesterday for her Jake. That made it farther than the post saying I did though :D

Lol, no worries Steve. Its the prayer that counts. ;)

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[bad luck]

My thoughts are with your mom and your family I sure hope this transplant helps. Your family has been through so much, it is about time for some good news. best wishes

[XJ Wheeler]

My thoughts are with your mom and your family I sure hope this transplant helps. Your family has been through so much, it is about time for some good news. best wishes

Thanks a lot Bob. We've been blessed in a lot of way but yeah, good news would be awesome. :)

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

We did in fact get the early results to the bone marrow aspiration. Still in remission, at 1% blast. It is yet to be seen whether the other results have changed.

Tomorrow she is scheduled to have the new line put in, and this one has to be in her chest.

Wednesday and Thursday she will be getting some chemotherapy. This isn't the big dose though, not really sure why they're doing this before hand. :confused:

[Brasscatz]

Did they offer any explanation?

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[XJ Wheeler]

Did they offer any explanation?

Sent from my Samsung Galaxy S4 because my microwave couldn't do it

I believe its a new thing they're testing. And the amount is set at random.

Sent via messenger pigeon - i talk, he types.

[OneArmArrowSlinger]

Still praying Jake.

[OneArmArrowSlinger]

If any of you guys get a chance; my 2 yr old daughter has been sick, today her fever spiked so BACK to the pediatrician my wife went. Long story short, pneumonia and influenza B. On antibiotics, got two shots, increase on the nebulalizer (sp?) treatments for the night and back to Dr first thing in the morning. Although a little older than 2, she's already been in the children's hospital for pneumonia almost exactly 2 years ago and has basically been kinda sick with something since she was born. Anyhow, not my intention to hijack the thread but I'd like to ask my brothers to join me in prayer tonight. Thanks

[XJ Wheeler]

If any of you guys get a chance; my 2 yr old daughter has been sick, today her fever spiked so BACK to the pediatrician my wife went. Long story short, pneumonia and influenza B. On antibiotics, got two shots, increase on the nebulalizer (sp?) treatments for the night and back to Dr first thing in the morning. Although a little older than 2, she's already been in the children's hospital for pneumonia almost exactly 2 years ago and has basically been kinda sick with something since she was born. Anyhow, not my intention to hijack the thread but I'd like to ask my brothers to join me in prayer tonight. Thanks

You got it! Hope she's feeling great really soon.

[4.3LXJ]

If any of you guys get a chance; my 2 yr old daughter has been sick, today her fever spiked so BACK to the pediatrician my wife went. Long story short, pneumonia and influenza B. On antibiotics, got two shots, increase on the nebulalizer (sp?) treatments for the night and back to Dr first thing in the morning. Although a little older than 2, she's already been in the children's hospital for pneumonia almost exactly 2 years ago and has basically been kinda sick with something since she was born. Anyhow, not my intention to hijack the thread but I'd like to ask my brothers to join me in prayer tonight. Thanks

Done

[Brasscatz]

Done

[OneArmArrowSlinger]

Thanks men, I really appreciate it. Last few nights been no rough but I think we are about through the roughest of it. She's still running a mild fever, doing breathing treatments every three hours, making trips to bathroom but we can see major improvements. God is good!

How's it going on your end Jake? Any updates?

[XJ Wheeler]

Thanks men, I really appreciate it. Last few nights been no rough but I think we are about through the roughest of it. She's still running a mild fever, doing breathing treatments every three hours, making trips to bathroom but we can see major improvements. God is good!

How's it going on your end Jake? Any updates?

Great to hear! I don't have kids but can't imagine the heartache when they're sick.

So far so good. She got the line put in yesterday. That went pretty well, although she's in a bit of pain and that will last for a couple days.

And today we're at the hospital for her to get the first dose of chemo... actually they just started it a few minutes ago. They have to draw blood every hour for 12 hours so we'll be here for a while. Some more tomorrow too.

[XJ Wheeler]

Got the call just a little while ago that the room is ready and we're on our way now.

Sent via messenger pigeon - i talk, he types.

[sbspence]

Added to prayer list.


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[xj4life2]

Just so ya know I aint forgot and continue to pray for ya'll

[XJ Wheeler]

Thanks guys!

Today, as planned, the big dose of chemotherapy was started and she will be getting these for the next three days as well.

Her blood levels has started to show the drop.

This better work!

[OneArmArrowSlinger]

Praying

[XJ Wheeler]

Should have updated this sooner but here we go.

The chemo went on as it was suppose to, four days of two kinds. During the last does she was complaining of numbness of her tongue, toes, and parts of her head. The nurse didn't help much with suggesting it may be a precursor to a seizure (a very possible symptom of one of the drugs). Thankfully she didn't have this happen, but still got my nerves a little more stressed.

She's been having a lot of swelling, mainly due to them taking her off the medicine she had to help relieve fluid.

The chemo has been doing its work taking her blood levels down below normal now. From here on its the tough stuff to keep her infection free and she'll undoubtedly be getting transfusions soon with the way their trending.

And finally, the whole reason for doing this, the transplant. She transfused yesterday with the new stem cells and it was very uneventful. (thankfully)

This is quite an odd thing to me. She will now have some of the same make up of the donor... The recipients blood type changes to the donors, as well as their vaccinations and I believe if the had those childhood illnesses like chickenpox... that would transfer over too.

Thanks everyone... My shift's just about over... and that pull-out couch is calling my name.

[Brasscatz]

Glad to hear everything is going pretty much as planned, bro. Prayers are with you

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[bad luck]

That is really weird that her blood type changes to that of the donor, I have never heard of that. Hopefully they screen the donors well, and she won't get any unwanted things from the donor. Best wishes, I sure hope it is a success.

[XJ Wheeler]

It strikes me odd as well, good thing is the donor has the same blood type.

Thanks guys!

[4.3LXJ]

That is really weird that her blood type changes to that of the donor, I have never heard of that. Hopefully they screen the donors well, and she won't get any unwanted things from the donor. Best wishes, I sure hope it is a success.

The bone marrow is where blood cells.are made. So if you kill the original and.replace it, then it will naturally make whatever the type the original donor had.

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[XJ Wheeler]

Starting Friday she started having severe throat and mouth soreness and pain. Its a common side effect of the chemo she's been getting to aid in her immune system fighting the transplant. She'll be getting that chemo two more times this week so they tell her its probably going to get worse, like not being able to swallow worse. She is exhausting all medications to help out and still not much relief, but enough to eat and drink for now.

Her platelets have been getting down to that range of being dangerous, and needing replenishment. Last night she started getting a bloody nose, and it took a while to stop. I expect she'll be getting some today as it has dropped to 17 (below 20 is her perimeter for a transfusion).

Because of the low red blood cells, her legs have also been quite painful. Her blood level is rather low, but hovering just above the perimeter they have for transfusing so she's had no relief other than pain medication.

I have grown tired of two things already. Not being able to understand the staff, or them understand me. I believe its vital to be able to convey a lot of this information to the nurses, but the language barrier is impeding that horribly. And also, the very apparent desire to render her unconscious. My meaning is anytime she calls them in for something pain or otherwise annoying symptoms, she gets the same answer... "would you like Xanax/Dilaudid/other various strong pain meds to help you sleep?" I know they just don't want her calling them and that not only appalls but angers me. Sorry, just had to rant a little.

Thanks guys!

[Brasscatz]

Ouch bro. I sure hope she feels better. I can't stand when people in an important communication position cannot be understood. It's far too important for that stuff.

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[abebehrmann]

RANT AS MUCH AS YOU WANT!!! I'm sorry things aren't going so well. Hope your mother starts feeling a bit better soon. Is the communication problem due to the staff only talking medical speak or do they not speak English very well? I find a lot of times with the doctors I work with, they tend to think that everyone knows these medical terms and you have to stop them every other sentence and remind them to speak in common speech.

[XJ Wheeler]

Ouch bro. I sure hope she feels better. I can't stand when people in an important communication position cannot be understood. It's far too important for that stuff.

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Exactly!





RANT AS MUCH AS YOU WANT!!! I'm sorry things aren't going so well. Hope your mother starts feeling a bit better soon. Is the communication problem due to the staff only talking medical speak or do they not speak English very well? I find a lot of times with the doctors I work with, they tend to think that everyone knows these medical terms and you have to stop them every other sentence and remind them to speak in common speech.

I've actually come to understand a lot of the medical speak through all this. But the problem is the English part.

Appreciate the kind words fellas!

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

The throat and mouth has worsened over the last day, and again they say it will continue.

She did in fact get the platelet transfusion I talked about previously, as well as a blood transfusion Monday. Plus today her platelets are back low enough to need another transfusion so I expect that later today.

Today marks two weeks in, so its a guess but expected to be half way through. Although the first week was nothing so hopefully she'll be back to feeling good in a few days... Yeah, that would be nice.

[bluedragon436]

Thoughts and prayers still going out for you all, Jake!!

[sbspence]

You will be on my prayer list until you give the all clear. If you would care to share first names of those involved I'll put you all on my church's prayer chain.


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[OneArmArrowSlinger]

Praying Jake.

[XJ Wheeler]

You will be on my prayer list until you give the all clear. If you would care to share first names of those involved I'll put you all on my church's prayer chain.


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I would surely appreciate that. My moms name is Doris. My brothers' Chris and i'm Jake, we are her caregivers throughout this.

Thanks everyone, it all means so much.

Sent via messenger pigeon - i talk, he types.

[Paddletrucker]

Prayers coming your way from NE Oklahoma. Hope everything is good.

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[XJ Wheeler]

Okay, so mouth and throat pain is still there... not much change with that.

She did spike a fever Monday night, not a ton but enough to get a call to the doctor and some antibiotics on board. Gladly it subsided by morning. Infection is one of the biggest things i'd like to avoid so... thank the Lord for that! They did blood cultures but no word yet on any results.

Also Monday she started some injections of a drug called Neupogen. In a basic description it is suppose to boost the immune system (white blood cells). In the process of doing so however it boosts the production of cells, and this has an associated side effect... bad bone pain. So, now she says she is starting to experience this.

[xj4life2]

Always in my prayers , with the good always comes the bad it seems like but remember all things are possible through our Lord who strengthens us!!! Hang in there brother its all in his hands !!!

[XJ Wheeler]

Always in my prayers , with the good always comes the bad it seems like but remember all things are possible through our Lord who strengthens us!!! Hang in there brother its all in his hands !!!

You know it bud! One thing that I always try to remember when things seem bad is... no matter what us going on, count your blessings, cause it could always be worse. And I am always glad its not.

[XJ Wheeler]

The bone pain has pretty much dominated her days since it started. The closest thing I can equate it is really bad back pain as its only up and down her spine and into her hips. Although the other stuff hasn't subsided, its just been outdone. She's in so much pain she can't go without meds for it, and this is a women who would NEVER take pain meds.

Thanks immensely for the thoughts, prayers, kind words... all of it!

[xj4life2]

If God Is all you have, then you have all you need John 14.8

[XJ Wheeler]

If God Is all you have, then you have all you need John 14.8

:thumbsup:

Sent via messenger pigeon - i talk, he types.

[OneArmArrowSlinger]

Man, that bone pain sucks, I can relate. Praying for her right now Jake.

[XJ Wheeler]

Thankfully that bone pain subsided that next day. What a relief!!!

Big news! She showed the big sign of engrafting by making some white blood cells! This is excellent because one of the unknown things with this procedure is if the new cells will "engraft". If they didn't it would all be for nothing. I guess the Neupogen worked because her white cells have, in two days, went from nothing to a few points over the normal (for a generally healthy person) range.

On a different note there has been a new thing added to her labs, blasts. It was a bit scary at first because we didn't that was normal, but it showed 2% in her blood. It SHOULD disappear soon, hopefully. Not good if it doesn't.

She got another unit of blood yesterday.

And the throat is still pretty bad. I think that just about covers it for now.

Thanks guys!

[OneArmArrowSlinger]

Praise God Jake!

[Brasscatz]

Woohoo! Hope that throat gets better soon ;)

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[XJ Wheeler]

Yep, i'm gonna go with... Praise the Lord!

Big news! Extra! Extra!

She has been discharged! We actually got out of there a few hours ago but had to get set up at the apartment. Which, more good news, we got accepted just in time for the free apartments they have right by the hospital! (there is a cleaning charge but no others)

Now, about her. Her blood levels have gotten high enough she has been clear of having to have transfusions for the last few days. They have had to tweak her magnesium and potassium though, and likely will need that plenty more. They have stopped the Neupogen because her white cells have come up.

She is now requiring oxygen most of the time too. Her o2 sats were quite a bit lower a few days ago though, so hopefully she will continue to improve and back to only when sleeping at least.

Her throat is also getting better, not 100% but a noticeable difference!


Now, we are set to be back in the morning. Feels like we were just there. :p

Sent via messenger pigeon - i talk, he types.

[4.3LXJ]

Good News Jake. Praise the Lord

[Brasscatz]

Even the smallest bit of good news makes me smile and feel like doing a victory dance for you guys, and yet, any victory you guys have is not small even compared to the universe!

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[XJ Wheeler]

Appreciate it guys! We're back at the hospital now, currently getting some magnesium infused.

Hopefully we'll keep the victory dances going!!!

Sent via messenger pigeon - i talk, he types.

[bad luck]

Jake, I'm so glad to hear the good news about your mom. I have been so busy the last few days that I haven't checked lately. I hope she continues to progress without any setbacks. It is so cool to get an apartment close to the hospital, but here's hoping you won't need it much longer, and she can go home for good.

[XJ Wheeler]

Jake, I'm so glad to hear the good news about your mom. I have been so busy the last few days that I haven't checked lately. I hope she continues to progress without any setbacks. It is so cool to get an apartment close to the hospital, but here's hoping you won't need it much longer, and she can go home for good.

Thanks Bob! Yeah, the apartment is a big blessing and helped out a ton. They even give a bag of some essentials and food to go with each place. Its pretty plain but has everything you need so that's good enough for us.

The whole building is solely for patients and their families, so its a great thing for people going through hard times. We might have to donate something to these people after!

Sent via messenger pigeon - i talk, he types.

[OldFaurt]

Thanks Bob! Yeah, the apartment is a big blessing and helped out a ton. They even give a bag of some essentials and food to go with each place. Its pretty plain but has everything you need so that's good enough for us.

The whole building is solely for patients and their families, so its a great thing for people going through hard times. We might have to donate something to these people after!

Sent via messenger pigeon - i talk, he types.

I will keep you both in my prayers.
:pray:

[OneArmArrowSlinger]

In my office, teared up & praising God! He's awesome!!

[XJ Wheeler]

In my office, teared up & praising God! He's awesome!!

:thumbsup:

[XJ Wheeler]

She has been feeling a bit under the weather the past couple days. Cough, wheezing, a slight temp at night, and just that cruddy feeling. They believe she has an upper respiratory infection, and put her on IV antibiotics accordingly.

[Brasscatz]

I sure hope she feels better soon :(

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[OneArmArrowSlinger]

I sure hope she feels better soon :(

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same here

[XJ Wheeler]

Thanks guys. Hoping this antibiotic is spot on for whatever is going on in there. Gotta hope it doesn't turn to pneumonia or the like. Its hitting her kinda hard.

[OneArmArrowSlinger]

Praying for wellness Jake.

[graverobberjk]

got my prayers

[XJ Wheeler]

Appreciate it fellas! She woke up this morning feeling a little better and her temp didn't rise during the night so hopefully we're on the other side now!

[OldFaurt]

Thanks guys. Hoping this antibiotic is spot on for whatever is going on in there. Gotta hope it doesn't turn to pneumonia or the like. Its hitting her kinda hard.

With all my heart, I pray for your mother's improved health.
I will do so every day.

As God has his eye on the smallest of Sparrow,
he surely holds your mother dearly in his heart.

Our love for those near us, our family, our friends,
This is how we give them strength during their trials and tribulations.

Your mother is blessed with a very kind and loving son,
and she is in the best care! Yours, God's!

As your mother is not living to be ill,
remind her of the joys of life!
Share it with her, Laugh, Rejoice in life!
When people are sick,
it is so very tiring being "Sick"!

I have been through this myself.
I pray God looks over and strengthens you as well!

[XJ Wheeler]

With all my heart, I pray for your mother's improved health.
I will do so every day.

As God has his eye on the smallest of Sparrow,
he surely holds your mother dearly in his heart.

Our love for those near us, our family, our friends,
This is how we give them strength during their trials and tribulations.

Your mother is blessed with a very kind and loving son,
and she is in the best care! Yours, God's!

As your mother is not living to be ill,
remind her of the joys of life!
Share it with her, Laugh, Rejoice in life!
When people are sick,
it is so very tiring being "Sick"!

I have been through this myself.
I pray God looks over and strengthens you as well!

Thank you, that was very kind of you. Beautiful words, and so very true.

I do need to rejoice for how much we/her have been blessed! I have been hung up in the moment lately and need to help her focus less on the struggle and more on the amazing blessings the Lord has given us.

Truly, thank you! That's just what i needed!

[OldFaurt]

Thank you, that was very kind of you. Beautiful words, and so very true.

I do need to rejoice for how much we/her have been blessed! I have been hung up in the moment lately and need to help her focus less on the struggle and more on the amazing blessings the Lord has given us.

Truly, thank you! That's just what i needed!

What we look forward to, is what we live for,
not what we are going through.

You are her joy, Stay strong!

Remember,
you have a vast many friends who care about both of you!
We wish you the very best, from our hearts.

Have a wonderful weekend!

[XJ Wheeler]

Its been a tough few days. She's had slight fevers in and out, lots of shortness of breath, coughing, wheezing, and more. After almost a week of this stuff they've decided to get her in the hospital for a few days to get stronger antibiotics and pulmonary treatment.

It doesn't help that both my brother and i have come down with something as well, so we're less help for her.

:pray:

[graverobberjk]

Its been a tough few days. She's had slight fevers in and out, lots of shortness of breath, coughing, wheezing, and more. After almost a week of this stuff they've decided to get her in the hospital for a few days to get stronger antibiotics and pulmonary treatment.

It doesn't help that both my brother and i have come down with something as well, so we're less help for her.

:pray:

it is not uncommon for people close to someone in her condition to exibit similar symptoms....my step son just had a bout with pnumonia and I came down with a wicked cough because I was on the front line of treatment... still praying for the best, im sure once the narrow spectrum antibiotics catch hold, it will turn around

[XJ Wheeler]

it is not uncommon for people close to someone in her condition to exibit similar symptoms....my step son just had a bout with pnumonia and I came down with a wicked cough because I was on the front line of treatment... still praying for the best, im sure once the narrow spectrum antibiotics catch hold, it will turn around

That could be it but my guess would be she just got us sick. Had a pretty wicked cough for a couple days.

They're changing up the antibiotics because she's been on this other one for five days with no sign of it working.

Thanks Jon!

[Brasscatz]

the unfortunate thing about antibiotics is that infections are building up a tolerance to them. I'm sure that's not the case here, but I'm still praying for you guys

[XJ Wheeler]

the unfortunate thing about antibiotics is that infections are building up a tolerance to them. I'm sure that's not the case here, but I'm still praying for you guys

That's exactly the reason they kept her off of them till a scheduled time. They're very aware of that this time around. Before they would just have her stay on them for a year straight. Good thing is she hadn't been on any for a few months leading up to this, so hopefully that isn't a problem.

[XJ Wheeler]

She finally got a room last night and she supposedly has something called RSV, a respiratory virus. They are treating it by putting her in a tent (yep) and giving her some special breathing treatment for three hours, every five hours for maybe five days. And we can't be in the room for this, during each three hours.

[abebehrmann]

Glad to hear that they've found what's been ailing her. Praying she gets better soon, so you won't have to spend so much time away during treatments.

[XJ Wheeler]

Glad to hear that they've found what's been ailing her. Praying she gets better soon, so you won't have to spend so much time away during treatments.

Thanks! It has been a bit tough, being away during all this but hopefully this treatment is the ticket.

[XJ Wheeler]

I just learned there is some blood work for her heart that showed high. Something to do with elasticity of her heart. They want to do an EKG next.

[Brasscatz]

I have to get EKGs pretty often. I'm sure the numbers are just off a little because of all the other stuff that's going on. I'm sure she's fine brother. Prayers sent up

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[XJ Wheeler]

I have to get EKGs pretty often. I'm sure the numbers are just off a little because of all the other stuff that's going on. I'm sure she's fine brother. Prayers sent up

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Thanks bro. She's had a few and her heart has done wonderfully through all of this so hopefully its nothing.

[OneArmArrowSlinger]

Praying for her. How's the RSV? One of my daughters had it once.

[XJ Wheeler]

Praying for her. How's the RSV? One of my daughters had it once.

Appreciate it Jon!

RSV is apparently extremely common, especially for children and old people. Not a big deal... unless you have a lacking immune system like her. Still doing treatments, she had a fever (100°) a while ago, and she needed some blood today. Some of the meds they have her on can affect that so she was just at the cutoff for it.

:pray:

Sent via messenger pigeon - i talk, he types.

[XJ Wheeler]

Alright, so in ways she's getting better and others not so much.

The RSV seems to improving as her temps are better as well as the coughing/wheezing. But do to a couple of issues she's become very short of breath at times. She's retaining flood like crazy, gained maybe 10 pounds even though she's not eating a lot, also her blood level has been dropping. Both of those are gonna make it harder to breath and get proper oxygen, plus the respiratory virus. So for now she's been on supplemental oxygen mostly around the clock. Today they gave her two units of blood because it finally came down enough for their parameters to give her some, as well as putting her on a continuous Lasix drip which is suppose to help "relief" the fluid retention. Although that doesn't seem to be doing much yet.

Her white cells have been hovering over and under the top of the normal range for a while now, possibly due to the infection or medication. And her platelets have been excellent, now getting to and staying in the normal range. And for some reason, hoping its normal, the blasts in the blood tests has come and gone a couple times. The docs say this may not matter as the bone marrow will show the real truth in the matter.

They did a bone marrow biopsy on Thursday to check that out. The beginning report shows 2% blasts, which is great! Although i do wonder why its higher than the 1% before the transplant but its still awesome because that means she's still in remission. Plenty more results will be coming back to show things like the microscopic breakdown of the cells and what percentage of the donor cells have taken over. All in due time.

She has understandably been down in spirits for a little now. She's just so tired of feeling bad and is getting that sensation of will i ever get better. I try to talk to her but she's staying distant with us. I do feel a bit at fault because i think her mood my be in part to me not being able to be there all the time like usual. I've still been under the weather and have been going back to the apartment to sleep. I may just endure it so i can be there throughout the night.

Keep that in your prayers please, for peace and mental strength through the Lord.



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[Brasscatz]

sending some up as we speak

[OneArmArrowSlinger]

praying as i type

[sbspence]

Will be praying. I know the cross you bear.


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