Prayers now please.

illead

DadysGirl said:

I know how you all feel very

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...

This is so difficult

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

Our love, Bill & Becky

allmost60

MChantal said:

I apologize for the prompt

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.

 

Prayers...

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

allmost60 said:

Prayers...

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

Hi Sue

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

DadysGirl

MChantal said:

Good evening everyone

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... 

You are all in our constant thoughts and prayers...

Thinking of you non stop...

MChantal

It's back

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

MChantal said:

It's back

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.

I'm sooo very sorry, but

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

MChantal said:

It's back

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.

Hi Michelle
I am heartbroken

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

MChantal said:

It's back

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.

Sorry

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

MChantal said:

It's back

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.

Truly sorry

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

 

Sincerely,

Liz

Rocquie

MChantal said:

It's back

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.

Numb

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

MChantal said:

It's back

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.

 
Michelle, How are you

 

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

MChantal said:

It's back

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.

Makes me sad...

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

girliefighter

Praying

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

mark6016

MChantal said:

It's back

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.

I will pray for you. Stay

I will pray for you. Stay strong

 

DadysGirl

girliefighter said:

Praying

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

Michelle & Kyle, your loved

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...

jimwins

MChantal said:

It's back

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.

Thinking of you

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

Hugs - Jim

MChantal

Hello my family and friends

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. 

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

MChantal said:

Hello my family and friends

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. 

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.

Thank you for the Update

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

MChantal said:

Hello my family and friends

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. 

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.

Xtremely glad happy to hear

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

Wishing you nothing but THE BEST...

lots of love...

jimwins

MChantal said:

Hello my family and friends

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. 

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.

Hi Michelle

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