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Prayers now please.

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Please.

DadysGirl
Posts: 346
Joined: Aug 2011

Hoping things are ok

NANCYL1
Posts: 289
Joined: Jun 2012

 

Prayers, of course.  Please tell us what happened.

Nancy

coachmike
Posts: 155
Joined: Oct 2011

prayer sent

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

My prayers are with you both. Please let us know how things are when you get a chance. Love...Sue

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Prayers and hugs - just read your post sorry for the delay.

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

I'm sending you both my prayers and hoping that everything is fine. 

Let us know when you can...thinking of you!

Sincerely,

Liz

illead's picture
illead
Posts: 860
Joined: Aug 2012

We were gone this evening and just now read,  Yes, our prayers are with you.  You know we love you, you are special.  This is not what we want to hear!  We know you will fill us in, but in your own time, just hang on to each other, we can wait.

Love, Becky & Bill 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Just wanted you to know you guys are on my heart today. 

Hugs

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

I apologize for the prompt scare yesterday as I was in a state of shock, it was I just know that I can always depend on you all here with the power of prayer and positive thoughts.

For the past 3 days Kyle developed a temperature ranging from 99-101, a headache, with quite some fatigue and body aches. The first day he told me about it we ended up calling the cancer center and of course, they called us immediately in. They did blood work, took blood cultures and started him on antibiotics. On this day, his WBC's were 2.2 (low) and platelets 119 (low). Their plan was to continue the IV antibiotics until the blood cultures came back.  Yet, for the past nights his temperature has gotten up to 101.6 and has broke out in a sweat.  Yesterday, the blood cultures came back were negative in which they decided they wanted to do an immediate MRI of his head and face. After his traumatizing MRI (as those that have had one know how uncomfortable it is) we were walking back to the infusion room to finish up his fluids and the oncologist caught us and took us into a room in which she told us she needed to do an immediate bone marrow biopsy with a full work up due to his blood work now. His WBC's were now 1.6 and platelets 75. His ANC is also 1.2 (neutropenic). They want to make sure the Lymphoma is not back....That is when they took him away to do the bone marrow biopsy and I posted the prayers please. They are working. After his dreaded bone marrow biopsy we got the results that his brain is fine and that they do see a sinus infection. So in all pleads and hopes, we are praying that this is all it is, a stupid sinus infection that is causing his body to freak out especially the blood work.

I am just scared again and I can only imagine how Kyle is feeling right now. I just really, really hate this feeling.

I will keep you all update with the results on Monday. Until than, we go back to the cancer center all weekend for IV antibiotics and fluids.

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Thanks for the update.  Hopefully the sinus infection is all it is.  We'll keep you guys in our thoughts and good luck Monday.

Hugs - Jim

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Michelle and Kyle. . .worry and fear are terrible side effects of having been through treatment for cancer. I recently heard someone say it was like having a stupid song stuck in your head. You know the one--it just keeps droning on and on in your mind. Anyone can say, don't worry. Live your life. Trust. Hope. 

But when you have a scare like you just had, it is almost impossible not to worry and be frightened. 

I am thankful that Kyle's medical team is so proactive! Best that he is in their hands right now and that they are watching over him. 

I am so sorry you are scared. I hate that feeling in myself and I wish I could give you a big hug and a shoulder to lean on. 

Prayers, hugs, and love,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3505
Joined: May 2012

I'm very glad that things seem to be OK. That fright was undoubtedly horrible.

I saw your post only a moment ago, so did not get the prayer request till now.

But, there are also prayers of thanksgiving, and I will pray for you two now in thanksgiving....

max

illead's picture
illead
Posts: 860
Joined: Aug 2012

So far that is a big relief.  I am thinking that it very well could be something simple like a sinus infection.  His body is no doubt not recovered completely from the SCT, so that could explain the intensity of whatever is happening.  It is so good to know that we all have been so supportive of each other and that we feel so comfortable to share.  We are here for you and Kyle every step of the way.  We are so hoping the news stays good.

Our prayers remain with you both, Becky and Bill

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Michele,

  I'll be keeping you both in my prayers. Believe me, I know how scary it is to think the cancer is back. I hope you get some definite answers soon. Not knowing keeps us crazy and full of stress. I am at peace with my relapse because I know exactly what I'm dealing with. I pray peace comes soon to you guys. All my love and best wishes...Sue

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Amen, Sue!  How are you doing?  Enjoying the new place?

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Today: 

WBC: 1.3

Platelets: 60

They are continuing to drop. He received neupogen today. Hoping for a rise in his counts.

His liver enzymes are also becoming increasingly elevated. 

Kyle is fearful that it is back.... 

 

I adore and love you all. Please keep praying for Kyle. 

DadysGirl
Posts: 346
Joined: Aug 2011

Hoping it is just sinus and blood work liver enzymes are result of sinus and his immune system being weak.

Thinking of you both and your families all the time I was traveling yesterday checked with phone for updates but couldn't write back... Please keep us posted as much as you're able to...

Lots of luv and hugs sweetie..

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Thinking and praying for you both...I'm so sorry that you guys are going through this tough time! I'm hoping and praying that he gets better soon! Take care and when you get a chance please keep us updated. Sending you both hugs!

Sincerely,

Liz

DadysGirl
Posts: 346
Joined: Aug 2011

I know you may not be able to let us know how things are but if you do get a chance please let us know how things are... Thinking of you all and praying for benign results...

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Well no news is good news?

Kyle's counts continue to drop (WBC and platelets). Liver enzymes and LDH continue to drastically arise.We have a PET/CT scan for tomorrow and should have the results of everything on Wednesday. 

I do not know if it's denial or if we are at peace with the possibility of the cancer being back or if we are merely going absolutely crazy because not one of us talks about it.... 

Kyle lie claims to be feeling somewhat better yet, his blood work tells otherwise. He has not had a fever in over 16 hours. Which brings me hope. I just cannot believe this is happening. Life... 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

You're probably going absolutely crazy ;).  Hope lives here you know :).  Please keep us updated and you know you're in our thoughts.

Hugs,

 

DadysGirl
Posts: 346
Joined: Aug 2011

I know how you all feel very well... Things going so well and suddenly things not looking so good and yet no one has any definite answer... One is in shock denial and acceptance yet still hoping God will not let it happen... We were going through all of that exactly two years ago these past few days and following days... These past months and this month is extremely emotional for me, just know you are all in my thoughts, prayers in a time when my heart is so broken... No fever is good news. We were told with my Dad's elevated LDH that it can happen from the recent high dose chemo, inflamation (He also had stem cell transplant). I know they were watching his liver enzymes during sct, because he had 30% chance of liver shutting down I forgot the medical term for it vod something like that... Is it possible it could be a delayed version of that from high dose chemo that they may need to treat him for? Please keep thinking positive no matter how difficult it may be. I'm so glad about no fever. Thank you for letting us know how things are going. Hoping and waiting for a message that is benign and with tons of smileys...

illead's picture
illead
Posts: 860
Joined: Aug 2012

I hope you know how we feel, you are so special, we are always here.

Our love, Bill & Becky

DadysGirl
Posts: 346
Joined: Aug 2011

Thinking of you non stop...

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Bone marrow biopsy confirmed the abnormalities in biopsy. Pathologist is 95% certain it is back. Only thing the PET scan showed was an enlarged spleen. They are sending the pathology to the Mayo Clinic who will give it a second opinion. Until than, we start cross testing his brother as a donor for allogenic stem cell transplant.

 

 

I am numb.

DadysGirl
Posts: 346
Joined: Aug 2011

I'm sooo very sorry, but please try your best to  look at it from another view that Kyle is alive and there is still options out there for treatment. Also, petscan is not showing anything else besides the spleen perhaps it is still not back ? Believe me Michele as bad as things seem it is still not as bad... He is young, already a survivor of autologous sct and hopefully if it is back he will get through it once again and this time we all hope it would be cured for good. My wonderful Dad was back in ER with very low grade fever only 10 days post sct and they couldn't figure out couldn't believe it was cancer they kept saying it is some infection of some sort... When they told it was cancer and nothing  can be done and I asked them about time, I recall asking the doctor in the hallway my Dad has months no response, thenweeks doc couldn't even say weeks left.. it is the worst feeling. I recall saying that isnt even enough time for me to tell my Dad how much I love Him...  PLEASE PLEASE try to be strong all of you... Lots of prayers and hugs to you sweetie...

monda
Posts: 15
Joined: Jul 2014

Hi Michelle

I am heartbroken to read these postings, you and I have emailed recently, my daughter has same as Kyle, but she was just diagnosed. I feel your pain and knnow how unbearable it can get, and the feeling that your own life is being sucked out of you.

And then the state of disbelief adn numbness, I will be praying for Sheri ( my daughter) and for Kyle, just keep yor faith and let God keep his hands on Kyle.

Blessings.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

You know we're here for you and Kyle.  We're not giving up yet!  I know hugs can't begin to ease your mind but I have an unending supply so you can have a few million.  Thinking of you both. 

 

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

I'm truly sorry Michelle to hear this. Be strong, I will pray for you both!

 

Sincerely,

Liz

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

dearest Michelle, of course you are numb. How could you not be? After all you have been through, the thoughts of having to do it again must be staggering. 

I am thankful a second pathology opinion is forthcoming. Much is discussed about second and third oncology opinions, but not pathology. My own second pathology opinion changed both my diagnosis and my treatment plan.

I am also thankful Kyle has a brother who will likely be a good candidate as a stem cell donor, if need be.

I recently met a man whose autologous transplant had failed. He then had an allogenic transplant and has been free of Lymphoma for many years. I have so much hope for Kyle and so much faith in you as both a Professional Nurse and as Kyle's loving Caretaker.

Prayers, love, hope, and hugs,

Rocquie

 

 

DadysGirl
Posts: 346
Joined: Aug 2011

 

Michelle, How are you doing? Are you in hospital or home? Did the neupogen shot help Kyle's WBC and Platelets rise?

How is he feeling physically, I know it must be difficult emotionally for all of you which in turn sometime makes one feel ill physically as well..

We are all thinking of you and praying...

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Ohhh..this makes me so sad! I am praying the 3rd opinion brings a possible different Dx. My heart hurts for both of you and I will be keeping you in my daily prayers. Please give Kyle a hug and tell him to hang in there. I can only imagine how numb you feel...blindsides like this are just hard, no two ways about it! All my love to you both...Sue

mark6016
Posts: 7
Joined: Jan 2012

I will pray for you. Stay strong

 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Michelle and Kyle.  I just wanted you to know we're thinking of you. 

Hugs - Jim

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

Michelle and Kyle,

I am praying for you both..You both have been through so much already, I have no words to even try to ease your worries other than we are all here for you guys and praying . Keep fighting and staying strong for each other.

Michelle, I speak for all of us here when I say we are here to hold you up when you feel like you aren't strong enough.

Kyle, I know you aren't on here but you are so strong and an absolute hero to us. Cancer sucks period and I have found in the last two years there is nothing easy about it, FIGHT YOUR *** OFF and keep a positive thought process that everyday you feel better/or atleast not worse, that you are kicking it's *** one small cell at a time.

I am sorry this comes late, I have not been on here regularly

Prayers and Healing

XXXOOO

Carie

DadysGirl
Posts: 346
Joined: Aug 2011

Michelle & Kyle, your loved ones are always in our thoughts and prayers... Please let us know when you're able on how is Kyle and all of you are...

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

We are currently in Rochester, MN at the Mayo Clinic receiving the game plan for Kyle's upcoming treatment. I truly appreciate all of your comments and responses. I am too blessed to have you all in our lives. I guess in a way you can say that Kyle and I are at "peace" with the relapse. It is just getting a bit scary tho because they are calling his lymphoma "unusual" now. I understand all T-cell lymphoma's are unusual yet, it's not something we really want to hear. In which, I am taking it as they're paying more attention to him. Smile

Kyle will begin chemo next week. This time they will be doing GVD. For those of you who may have had the GVD regime. How was your experience? I know it's somewhat the same severity of the CHOP-E yet, has different administeration dates and etc. He will have two rounds and after the two rounds we will return back to the Mayo to see where is progress is. I am hopeful that the chemo will work for him considering he did respond so beautifully to CHOP-E. However, they did indicate that there is a 50/50 chance he may or may not respond. Faith and hope, he will! I know it. If not, they will switch his chemo to a new regime being ICE or DHAP.  After we reach remission again (we will), Kyle will undergo an allogeneic stem cell transplant. They are currently testing his older brother to be a donor and if his brother is not an exact match they will search for the unrelated donor. Given his ethnicity, he has a 70% chance of finding a donor, if need be. Thank you Lord. The Mayo has also signed Kyle into a clinical protocol called CIM.  The clinical protocol will be pulling the Lymphoma from his bone marrow and looking he genetic make-up of the type of Lymphoma he has in hopes they can find some specific drug that may help reduce the cancer. It is quite amazing and we are hopeful that they will find something specific in the genetic background of that dirty cancer to kill it completely!

I have a gut feeling that everything will be okay. God has a plan and for some bizarre reason he has chosen Kyle and our family to undergo this specific plan. As long as He continues to be with us through this, we will be okay.

I appreciate and love you all. Please continue to pray for Kyle and our family.

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I am so thankful that Kyle has such a great healthcare team. And YOU--a Registered Nurse! I continue to pray for you both. And I send my love. I feel so much hope for him. And please know that you are a blessing and inspiration to me too.

Hugs,

Rocquie

 

DadysGirl
Posts: 346
Joined: Aug 2011

Xtremely glad happy to hear from you... Was very worried..

Wishing you nothing but THE BEST...

lots of love...

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

You two have been on my mind and thank you for the update. I'm glad you have a plan and alternatives.   I don't have experience with GVD so I can't give you first hand information other than what I could research.  It's amazing how far they have come with genetic research and where it's going.  Hopefully Kyle's brother will be an exact match but it's nice to know they're likely to find a match otherwise.

We love you guys and please know we are here for you.  Tell Kyle, he's welcome to chat with us. 

God bless and keep you both.

Hugs - Jim

 

 

illead's picture
illead
Posts: 860
Joined: Aug 2012

     It is such a relief to know that Kyle's situation is hopeful.  We have been so worried.  Bill and I were talking about you last night.  It sounds like you are in very good hands and that they are staying up with everything out there in the research field.  Look at what happened with Bill.  They had nothing permanent for relapsed MCL and then 3 months before his relapse they took his lifesaver drug out of trials.  You have much to be hopeful for, it seems lymphoma is in the forefront of many studies.  It sounds like Kyle's doctors are not leaving a stone unturned.  Thank you for updating us, we know your minds are on other things, so we don't expect too much posting from you, and we all understand.  Keep fighting and we will keep you in our thoughts and prayers.  Our best to your families also.

Love, Becky & Bill

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

I'm glad that everything is moving fast for Kyle and you! I know how worried you must be but your faith will get you both through this. I will continue to keep you both in my prayers...I can exhale now, I think we were all holding our breath for your response! Glad it's a positive one!!! Take care sweetie and keep us posted when you can (((Hugs)))

Sincerely,

Liz

vinslymphoma
Posts: 24
Joined: Feb 2014

my prayers for Kyle and his faster recovery and complete remission forever...hope God gives the strength to withstand this toughest challenge and come out of it soon and return to healthy life..

pamperedwife
Posts: 3
Joined: Oct 2011

Prayer's and hugs coming your way. I haven't been on in a very long time and It is amazing what prayers can do. I wish you the best. 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Praying for you guys. 

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

You all. Just reading through all these past posts and I am just so grateful for you all. I do not think I could ever say this enough but, thank you all.

Kyle and I are doing well. We are expected to start GVP (correction from last post) regime this upcoming week until than, we are just going with the flow of life, attempting to keep busy and not allow stupid cancer to dictate our lives. Stupid cancer!

Interestingly and strangely enough, Kyle's symptoms have subsided. He has not had a fever, no night sweats, no body aches, the welts are gone and he "doesn't feel sick." They did bilateral bone marrow biopsies at the Mayo Clinic and of course, the pathology report is beyond confusing yet, I do want to quote one part that is comparing the biopsy obtained here at home (7/31/2014) to the biopsies at the Mayo (8/21/2013). 

"Previous specimen's (7/31/2014) were stensively reviewed together with the current specimen (8/21/2014). The tumor cells in the previous two specimens exhibit intermediate to large in size, irregular to convoluted and elongated nuclei, variable prominent nucleoli and scant deep basophilic cytoplasm with fine eosinophilic granules. They are positive for CD8 immunohistochemical study with distinct golgi staining. The neoplastic cells are only occasionally present in the current specimen. The difference in tumor burden between the current (8/21/2014) and previous specimen (7/31/2014) may responset a sampling bias. Clinical correlation is suggested."

Yes, it could potentially be a sampling bias. Yet, the fact that Kyle's symptoms have basically disappeared and the cancer cells are only "occasionally" present in the biopsy now. What could this mean? I believe in miracles, I really do. And, I know not to get my hopes up but..could it be possible that Kyle's immune system is fighting back even tho it is his immune system that "has" cancer. I may be going crazy too. Undecided Lol. I guess we will find out more next week when he get's his blood work done.

I hope you all are doing well. You all deserve it. Smile

Kyle and I went to a benefit last weekend for Presbyterian Hospital supporting Childhood Psychiatry. The theme was the Roaring 20s. It was too fun! We should have been born in that era to dress up everyday! Lol

 

 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Michelle and Kyle,

I cherish you too. You both look fantastic dressed in the looks of the era. BUT, let us be thankful for living in the here and now for the blessings of research science and the progress in treatments for our disease.

I am so thankful that Kyle is feeling better and that his symptoms have subsided. I believe in miracles too!

I will keep praying for you both. You are such a gorgeous couple and such an inspiration.

Much love,

Rocquie

 

DadysGirl
Posts: 346
Joined: Aug 2011

Loved seeing you both smile... I'm sorry I can't write much these days... Please keep us posted hopefully with more great news...

illead's picture
illead
Posts: 860
Joined: Aug 2012

We are very happy with your news.  I don't quite know what to think either, it seems amazing and unbelieveable.  I understand why you don't want get your hopes up and that is wise, but my goodness, that is, like you said, crazy!  Well, Bill is testimony that things can turn around.  For us it was all timing and the new target drug, but it shows us never to give up hope and never quit the fight.  All of us have been so worried, I have been messaging some personally and we have been very concerned.  Thank you for letting us share your promising news and please let us know what you find out next week.  BTW, you both look like the Belle and Beau of the ball.  Yes, that must have been quite the day.  I am sure, as with us on the forum, you have been a real example and encouragement to your community. 

Love and prayers always,

Becky & Bill

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