MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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arthurjedi007's picture
Replies 16
Last reply 8/13/2015 - 4:52pm
Last Thursday I was at NIH in Bethesda for TIL screening. Before going we already did a blood kit and biopsy testing. I had no antigens they wanted so the other trials were a no go.
 
Also had to be at least 14 days off nivo PD1 so last Thursday was 16 days so 2 days overdue for nivolumab.
 
Not sure how much folks might be interested in so I'll try to include a lot of my experience. 
 
Basically pretty much everyone was nice.
 
If driving you want to go to the patient entrance. Security checks the car in my case a rental and you go inside where they check your stuff then give you a day pass badge.
 
Just a short little turn from there to the main entrance where dad dropped mom and I off. He parked in P1. Not sure much about that.
 
Lots of walking required but you can avoid all the steps. If you have to be in a wheel chair that disqualifies you immediately for TIL. My cane did not disqualify me. I ended up walking all over that place that day. Not easy but suprisingly I did it.
 
First stop after the men's room was admissions. They should have sent you a map of the interior of the building ahead of time. If not it's on their website. Basically they have you sign in and give you something to read then they call your number. Then another lady brings you back to make sure all your demographic stuff is right and things.
 
Next was supposed to be Clinical. That's on the 3rd floor. But it was 7:30 when I was supposed to get my blood work and they said no one would be in until 8 so back to the first floor we went.
 
Blood work was the now typical sign in and wait for your number to be called. I guess I was nervous trying to get everything done on time and one of the patients who had been going there for years said NIH stands for Not In A Hurry. So I felt better. Then they call your number and lead you back to in my case the guys cube. As he was checking all the tests and putting labels on the tubes he noticed a urine test. So did that and back. By then he had all 12 tubes ready. Sheesh. I was used to 2 or 3. 12 was like when I was first diagnosed over 2 years ago. So yes you got to be in decent health for this. Went fine and the small bump is almost gone after 4 days.
 
Now back up to Clinical. This is where the lady I've talked to works and the nurses and doctors that are part of the TIL. They did the usual weight, height, bp, oxygen, pulse, temp thing. Met the head nurse that has 4 that do the clinical. Met one of those. Signed the trial papers. Not the papers for TIL but the papers for evaluation of being accepted into TIL is a trial apparently. If everything was done could also have new patient orientation at 10:30 or afternoon if wanted or talk to a social worker for financial aid and anything else that concerned me.
 
Next back to first floor for head MRI. Got to the place that the sign above the lady's head says CT/MRI Reception. Said I was there for my 8:30 head MRI. She looked at her papers and said she didn't have me until 9:30. I said they said 8:30. She said well they sometimes do that because of the contrast. She said I had no contrast for the MRI but I do for the CT. Here's papers to fill out and have a seat. So I turn the papers in and wait thinking she knows what she's doing. At 9:15 another lady gives me contrast to drink. Parents go to cafeteria. At 9:30 they bring me back to change into scrubs. Not easy to change my shoes on a bench by myself but I somehow did it. Then another lady that does the IV. She said I was here for my CT and I was like yes but I was also here for an 8:30 head MRI. She took me to the real MRI reception. From the other one that was through a door, down a hall, around a corner and through another door. They said I had no MRI scheduled. So back for the IV and did the CT with more contrast in my IV. Went back to the CT/MRI reception lady and questioned about the 8:30 MRI. She said that was at 8:30. I said I know I talked to you at 8:30. So back to the real MRI reception and they said they would call me if they get an opening.
 
My parents are still in the cafeteria so I'm in scrubs with no phone, bill fold or anything except a bag with my street cloths.
 
So off I go to the EKG area. That was a quick take me into a room and lay down and wait. Finally some rest. They gave me the EKG paper saying to take it back to radiology.
 
So back to radiology but I didn't want to talk to the CT/MRI lady so I asked the chest x-ray lady that the EKG person said to bring this paper to them. Her eyes get big and says no no. If you want a chest x-ray she can do that. So that was on the list too so a simple stand in front of machine. Then turn and hold on to a couple straps and both xrays done.
 
Finally everything done except head MRI. Parents not back and it is about 11am. So up to 2nd floor cafeteria and no parents so back to radiology and they just got there so back up again to cafeteria. It is ran by Eurest. Same that used to be where I used to work. Same food and tastes the same. Not that great in my opinion but I was hungry and exhausted.
 
Back to Clinical at 12:30. Wait until sometime after 1 and they take me back to an examination room. Gave the head nurse I met in the morning the paper she had given me to fill out plus the EKG paper report. Also mentioned the head MRI issue so she got on it right away. Said it was scheduled for the next morning which wouldn't work too good since we fly out the next day. So she got it set for 4 pm.
 
The next folks that came in the examination room are to check my veins. Because if I'm accepted the next visit is surgery. But 2 days before surgery these ladies hook you up to a machine for 4 hours. The needles they use are way bigger than the normal cancer needles I'm used to. This machine filters your blood so they can have something to put the surgery tcells in to help them grow. They check your veins with a blood pressure cuff and visually looking at them.
 
Next came in the lady I've been talking to on the phone pretty much every week since early May. First talked to her last November.
 
Next folks that came in was a doctor. He spent most of his morning looking through all my records. He went over my treatment history. Had me explain the cane which is more of a crutch because I don't want to fall. But like I said last winter I had to have it. He checked me out a little physically and I think asked some more questions and answered ours. He was confident I was physically ok for the treatment.
 
Next that doc and a senior doc came in. She was focused on which tumor to remove to get the best cells. Like she said they do not do major surgery because the patient cannot recover enough to do the treatment. So reading between the lines in my opinion this is something they've learned from the poor folks who didn't make it through the treatment. For my best cells would be the tumors in the fat of my kidneys but that would be major surgery so a no. Also major treatment would be the one in my skull pressing on my brain so no. They would not consider the one deep in my leg because they do not want to risk jeopordizing my already problematic walking. Now the huge one in my shoulder might have been minor surgery which is the only type of surgery they will do. But since was mostly necrotic it would not give the cells they want. Last is the super clavical tumor would be minor surgery. She felt it and it wasn't as loose as she would like but they could do it. It is also big enough because it has to be at least 2 centimeters. But it is smaller than it used to be. In my opinion it is smaller because of last winter's radiation and maybe the pd1. But since it is smaller they believe it is responding to treatment thus a no. Like she said they could get tcells but if they are going to put me through such a treatment they want to make sure they get the best cells. So again reading between the lines I think that is one reason I picked up why they have better response they only go for the best cells. Probably also something they've learned from the folks that have gone before. So no tumors to harvest so she said they would make the final decision monday when they all get together but at that point she believed it would be a no. They said the first doc would call me around 1pm monday after their meeting.
 
So back to the 1st floor real MRI reception. Signed in and they verified I already had an IV and scrubs. Waited and took 2 tylenol and went in. Typical remove glasses and leave cane. The typical small tube but at least they blow cool air in this one. Most of them get so hot I burn up so that was nice. Did the first part of the scan fine. They put the contrast in and the guy no sooner got to sit back down when I say I'm choking. I had felt a metalic taste in the back of my throat which I vaguely remember from a couple years ago they said is normal. So I swallow and all of the sudden fluid is in my throat that is too much to swallow and I'm choking. He says he's coming right in. As he's coming in he asks how I'm doing. By then I have so much fluid in my throat I can't talk so I just squeeze the ball. He says he's hurrying. Then the fluid starts filling my nasal passages so I can't breathe at all. Seems like a long time but total it was probably only 10 seconds from me saying I was choking. That guy was fast. Probably another miracle the scheduling got messed up so he was there to be fast for me. He then had me out and my back propped up going to put me on a strecther. Once I was propped up I guess it was gravity because all the fluid just rushed down. I kept my mouth closed otherwise I probably would have made a mess. So at least now I can breathe I'm just coughing and gagging as they wheel me into the corridor. Suddenly a gazillion medical people are around. They check me out and see my face and upper chest are flushed so they give me benedryl. They page the first doc that I had saw a little while ago. They are trying to decide what to do. Whether to keep me in the hospital over night or what. But since I seemed ok they started talking about finishing the scan. The tech said there was 12 minutes left but it turned out to be 18. Since my parents saw all those medical folks running they thought it was for me although there was at least a half dozen or so other people back there. They were very worried so some medical people talked to them and when I was ok they had them come see me so they knew I was ok and went back. They checked me out some more and cleared me as being ok and to never have magnavist mri contrast again. So the tech brought me to the men's room and I could see my face was still a little red. Then I got back into the tube and finished the scan. 
 
They wheeled me in a wheel chair to the main entrance. Then we waited for dad to get the car and left. What a fun day. lol
 
So today. Monday at 4pm their time I called the first doc and he confirmed it was a no. But if that one in my super clavical ever grows they want to know about it.
 
So I got a message out to my Chicago doc waiting to hear if he has an opening in any of his good trials.
 
Also called my Saint Louis doc where I'm at and already got setup to get back on my PD1 tomorrow afternoon. So only 1 week late.
 
Thinking about that trial Celeste mentioned about Keytruda plus some inhibitor pills. Also thinking about that trial Catherine posted about Keytruda plus daily IL10 injections. Also thinking about going to MSK or MDA. Especially since the t10 ablation and cement it seems I can fly some granted there was almost no turbulence and very soft landings. Certainly going to have to pray for what to do next.
 
So that's it. Maybe some tidbit in there will help somebody sometime. I dunno.
 
Artie
 

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Hayden30's picture
Replies 3
Last reply 8/10/2015 - 11:15pm
Replies by: Bubbles, Hayden30

Hello, 

im new to this forum and have been stage IV since February. I've had mets all over, lungs, eye muscle, bone, brain and subcutaneous. I tried yervoy which didn't help, and my doctor put me on the combo of mekinist and tafinlar because I'm BRAF positive. I'm just curious why I would do this versus just Zelboraf like other people in my position. Does one method work better? I trust my doctor, I'm just wondering if one is proven to work better or is newer. I can't seem to find the info when I research those drugs. I'll take any word of encouragement also!! It's been a rough few months. 

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anitarivera's picture
Replies 5
Last reply 8/13/2015 - 12:01pm

I thought I recently posted, but can't find my original post. I'm new here, diagnosed last October with stage 1b melanoma, had a WLE and no further treatment. I consider myself extremely lucky.

my husband and I want to have another baby but no doctor will give us a straight answer about the possibility of the pregnancy causing melanoma to rear its ugly head again somewhere on my body. We are scared/confused and would appreciate anyone's experience or knowledge with regards to this topic.

thank you!

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strideam's picture
Replies 5
Last reply 8/12/2015 - 4:47am
Replies by: stars, strideam, tsykes1

Hi, so thankful to find this group. I'm 39 and on July 27th was diagnosed with melanoma in situ, had a WLE the next day. I don't have the pathology back for that yet. Pure chance that I asked my regular derm to look at the funny mole on my calf--she biopsied it immediately. I have no family history of melanoma, no tanning beds ever, but a few sunburns I can remember and I've lived in SoCal for 15 years. Still, I was absolutely shocked at the diagnoses.

I went to a derm specializing in skin cancer and had two other 2mm moles removed and am awaiting those results as well. She referred me to an oncologist here who is a melanoma specialist just to get any questions answered, etc. and I see him Wednesday.

In the meantime, I'm freaking out. I have a three year old. We were going to try for another baby and now I'm scared to do that.  I'm rereading my biopsy obsessively, as the dr. who did my WLE barely discussed it with me. I'm posting it below if anyone has any feedback...it SEEMS good, but my biggest fear is it'll be more advanced after the WLE pathology.  WHY DOES IT TAKE SO LONG?! Ugh.

Melanoma In Situ

R/O DN VS MIS 4mm

There is an asymmetric proliferation of atypical melanocytes arranged as irregular nests and single cells along the dermalepidernmal junction as well as above it. In some areas there is more uniform arrangement of junctional nests and intradermal melanocytes in the form of a preexisting dysplastic nevus. Heavily pigmented melanophages are present in the dermis. The atypical junctional melaoncytes extend to the lateral margins. A severely dysplastic nevus was considered, but given the extensive pagetoid spread, a melanoma in situ arising in a compound dysplastic nevus is favored.

Amy

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jschwinck's picture
Replies 2
Last reply 8/11/2015 - 8:16am
Replies by: Mat, arthurjedi007

Recenlty mom was diagnosed with Melanoma. She has been strated on Keytruda treatment and scheduled to go on her second treatment this week so around 3 weeks in now. 3 Weeks ago tests were normal, now she had some more blood test done last week showing that her LDH levels were really high like above 4,000. Does this seem right? I can't find much information except for indicators and markers that don't tell me much for numbers that are not even close to that. I was underrstanding by some things I was reading that even LDH in the 300's is extremely high. Maybe I am not looking in the right place or reading something wrong I don't know.

 

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Beezer's picture
Replies 9
Last reply 8/11/2015 - 8:39pm

My beautiful sister went to be with the Angels on the 29th of July, she fought so so hard to stay on this earth for us, but unfortunately it was not to be, the ache I feel right now is worse than any pain I have every experienced, I miss her so badly it's tearing me apart, her husband and four sons are totally shell shocked and all we can do is hope our little Angel is at peace with no pain and we will love her forever 

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evieg's picture
Replies 6
Last reply 8/12/2015 - 3:07pm
Replies by: arthurjedi007, SarahA, dkeagle, Anonymous

We found out that my husband has 24 small brain tumors. He will be doing three weeks of Whole Brain Radiation .  When we met with the Dr. she said that when he is done with the WBR he will then have Biochemotherapy.  She said he does that or his other option is Hospice.  Needless to say we are devastated. Of course, my husband will continue his fight against this beast, but I know the odds are not in his favor. We were told that there is a 60% response rate and out of the 60%... 7-10% go into remission or NED .... The other 50% will get an extension of survival for how long? Of course, no one knows.   Just so so scary.

Would greatly appreciate any input or experiences you have had  good or bad... 

Thank you and God Bless each of you.

Evie

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tsykes1's picture
Replies 2
Last reply 8/9/2015 - 1:32pm
Replies by: tsykes1, stars

Needing some advise on how to tell if sun spots or age spots aren't a new melanoma.  

Terri Sykes

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cbeckner98's picture
Replies 7
Last reply 8/16/2015 - 11:04pm

Hi all,

My Dad just started Keytruda for his Stage 4 melanoma (with multiple lesions in brain and one in lungs; after doing WBR in June) but he has had significant swelling of one of the brain tumors which is now causing cognitive impairment.  He basically stopped eating/drinking last weekend at home, then we got paramedics to get him to hospital on Wednesday, he is on 8 mg of steroids twice per day as of Wed. night, and then now he is resisting eating again.  He is getting plenty of fluids - but we have a big meeting with the gamma knife/surgery specialist in Seattle this coming Wednesday and so are trying to figure out how to get him healthy again (or otherwise that doctor won't see him and/or won't work on him).  His largest brain tumor is located in his frontal lobe - and hasn't gotten bigger over the last two weeks but does have swelling around it.  Has anyone seen this kind of brain met swelling while on Keytruda?  Did the effects of it last long?  Besides increasing dosage of the steroids, what other options do we have?  The local hospital is pushing to put my Dad in hospice/a nursing home - but we haven't even tried a full course of Keytruda yet and only discovered his cancer in mid-June.  There must be other options!  Any advice on this would be appreciated!  We are not ready to give in to this disease!!!

Thanks,

Carrie

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2015 - 1:42pm
Replies by: Anonymous, Hayden30

Hello everyone, 

I noticed today "something" under my skin, which is about 1 cm (or larger???).  it has a pink-red circle about 5 on the surface, but it feels under the skin: not sure about the shape, but it is firm, attached to the overlyink skin (when taken between the fingers, it has a dimple sign associated with dermatofibroma), but movable agains a deeper tissues. I'll be trying tiger an appointment with modern ASAP, but Ian so scared. Can dermatofibroma be felt mostly under the skin??? Can subq have a dimple sign????  Thanks for listening. I am a Stage 1 B patient, 11 years after diagnosis.

 

 

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JenJen12's picture
Replies 6
Last reply 8/10/2015 - 12:40am
Replies by: cavsnut, JenJen12, Linny, stars, Becky

Hi all,

 

Just wanted to check in! Realized I haven't been on the forum for at least a year or two. Just hit my 6 years NED after my first oncologist gave me 6 months to a year! .. For those of you that don't remember...

Diagnosed in 2009 at 25. Stage 3 with less than 1% of isolated tumor cells in sentinel node.  First oncologist was horrible and told me there was nothing to do because I would die from it in the next year and there were no treatment options. Refused to accept that and did my own research. Found UCSF Melanoma Center and Dr. Daud...both amazing!!!!! Not many choices back then..and told I was BraF negative etc..! I remember when i asked him my prognosis, he smiled laughed and told me not to stop buying bananas because there was a large chance my melanoma would NOT come back. Genetic testing could not ID known mutation type so we decided on Interferon for a year. HIgh dose for a month in hospital and then 11 months of self injections. Wasn't easy but wasn't horrible. Able to attend classes and workout after first month or two.

Changed careers from Law to Nursing. Won MRF courage award in 2010 at the SF gala. Just had my 6 year NED date and though I put up a little resistance :) ..my oncologists stopped all PET/CTs and moved visits  annually instead of 6 months.  During the past 6 years I have changed careers and received my Masters in Nursing and will be an oncology nurse!! My nurses and experience have changed my life for the better. Excited to give back to those who helped me so much. There is hope ! Even when told there isn't any :) 

Sad to come on here and read about Jerry after seeing his FB..he was one of the first people who befriended me on this forum years ago and helped me navigate my new diagnosis. He defintiely was an angel and will be missed. 

To all the old faces! Hi and thank you for all of your support over the years! 

 

JenJen

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Hikeratheart's picture
Replies 7
Last reply 8/15/2015 - 1:04pm

 Hi everyone,

I have been reading the forum for a few months, it has helped me tremendously through my diagnosis.

I need help deciding on interferon.

Here's my story:

On May 21st, 2015, I had biopsies for two spots, one on my back, which was thin, and another more concerning on my right arm. I was diagnosed with melanoma at the end of May. I have 2 primaries. Stage 2b. 

Surgery on July 1st -   SNLN biopsy, negative for majestic melanoma.   ( yeah, happy dance)

Wide re-excision of my right arm, biopsy: melanoma in situ, margins widely free of involvement, negative for invasive mel.  Breslows 4.5 , Clarks level 5. The depth concerned me!

Wide re-excisional biopsy of skin on my back,  .4 mm. Clarks level 3

negative for residual, invasive and in situ melanoma.

My oncologist, Dr.  Robert Taylor in Milwaukee (Aurora health) has advised me that since I have 2 primaries,  I should (could) do interferon for 4 weeks (5 days) and then  48 weeks /3 days.  On Monday, 8/10, I am getting a second opinion  from another oncologist. 

 

Please advise me me on this. If I understand correctly, I am in the gray area?  Is interferon all that is available or offered at this stage, so that's why their advising it? This is a big decision for me. I am a healthy 60 yr old woman with 2 new grandkids.  I really want to do everything possible for my good health, but have learned that it's a controversial treatment. 

Thank you for any help you can offer.

 

Kathy  McC.

 

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cckma's picture
Replies 9
Last reply 8/10/2015 - 2:47pm
Replies by: Maureen038, cckma, Anonymous, Ed Williams, Janner

Six weeks ago a dark spot with pale brown edges appeared on my left big toe nail that covers about 35% of my total nail. I went to my doctor and he suggested that we wait a month and see if it moved at all with the growth of the toenail. After a month went by I didn't detect any movement of the blemish so I went back to the doctor and he set me up with a dermatologist. The dermatologist looked at it and thinks it's a hematoma but to be safe she scheduled me for a biopsy. Later that evening I compared close-up photos with a ruler from six weeks ago until now and I have determined that it has moved a little bit with the growth of the toenail. Should I keep the biopsy appointment ? Cancer runs rampant in my family and this blemish appeared for no reason at all. I almost never bruise, I am sure I didn't injure my toenail, but it is moving with the growth of the nail. It does have various shades of brown and black in it, and a straight vertical edge in the middle of the toenail that doesn't reach either the cuticle or the tip of the nail. Is this ridiculous to get a biopsy? I'm going to lose my nail in the process. Everything I have learned about this suggests that if the spot moves with the growth of the nail then it isn't melanoma, but is it gauranteed to be benign just because it moves outward as the nail grows ? The portions I can measure have moved, but I have no way to know if all of it is moving as it is large and irregularly shaped. Thank you for your input!

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Millykamp's picture
Replies 9
Last reply 8/8/2015 - 11:53am
Replies by: Anonymous, Janner, Linny, stars, Millykamp, Momofjake

Still learning a lot but still getting overwhelm.. I haven't seen the specialist yet.. So many questions.. 

 

I I do have a few that I am wondering.., who it being an early stage cancer. 

can body ache be part of the cancer? 

The area where the lymph node are located could it be tender at times to touch but not swollen? 

Can feeling tired all the time be part of it as well? 

 

I also want want to thank everyone for amazing support groups.  This place have really help me u durst and most and still learning 

Melissa 

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Momofjake's picture
Replies 16
Last reply 8/10/2015 - 1:22am

Hi, I have read for months but haven't posted much. 11 mo ago my then 17yr old son was diagnosed. Now stage 4. It's everywhere(not sure about brain). I think in a weird numb way we were used to each scan being worse than before. He is now on keytruda. He had his 3rd dose yesterday. He feels great and looks better. We see shrinking tumors on his skin. He really feels it is working. A month ago I really felt like I would lose him soon. It's a miracle for us. So, he is now 18 and never talks(some grunting and lots of ignoring)and of course in in able! He has had it in his spine for 4 months with tumors 2.7cm. He has almost no pain but with the keytruda working I don't want permanent spine damage! I finally got him to see the radiologist. He had a large dose of radiation on his lower spine plus his infusion of keytruda/zomata yesterday. He is in a lot of pain in his legs. Poor kid! Senior year: freckle on his head, swollen node behind ear, 8 plosives nodes and saliva gland. Biochemo, radiation, new spot, metastatic, scan, liver, break to graduate, grows again, lungs. Spine, bones. Femurs, muscles, skin, ribs...he does everything...diet, natural things, he plays every sport everyday, sees friends all the time, tells NO one he is sick, plans college but has been stuck w mom for the last year a ton(worst thing ever for a 18yr old boy), and now more radiation. I see the keytruda shrinking things and he will have scans mid sept. Hoping we finally have a scan that says things are moving in a better direction. It's been full time cancer for a year. Praying for a good college send off as he learns to take care of himself mostly and live the life of a boy his age!! He is treated at huntsman in Utah and is going to school just 30 mi. From home! 

Wondering about any spine mets, radiation there(went through his tummy), and always open to keytruda experiences! Been a year with a heavy heart as a mom, but also many blessings. You learn to live in the moment, what really matters and how to be grateful in any situation!

Thanks for enduring the novel here! I have been helped here many times. Prayers to all my friends fighting! Keep it up!

kerri--mom of Jake

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