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Hogs & Quiches & Prayers Round-up:  My 5 year old has cancer  |
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KathyC
True Blue Farmgirl
583 Posts
Kathy
Gastonia
NC
USA
583 Posts |
 Posted - Dec 23 2010 : 11:51:22 AM
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I think this is babysmama's mom - it is a beautifully written story of what's their life is like now http://marypotterkenyon.wordpress.com/2010/12/23/faith-and-small-miracles/. I was reading this at my desk at work with tears in my eyes. If you look also at the recent posts there are more stories. From that post - Jacob loves army men, Becca is a very girly girl and loves stickers and stationary and Joseph maybe cars or trucks and he is only 2.
Kathy
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eggfarmgirl
True Blue Farmgirl
253 Posts
Kristy
Melvern
KS
USA
253 Posts |
Posted - Dec 23 2010 : 1:52:53 PM
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Julia...great post with so much wisdom and understanding to pass on to all of us and to lead us to support them in whatever manner we can. I so understand this from a bit of a differect perspective. It was not my child,but my husband going through what Elizabeth and her family are. I was so blessed to have friends and that did just as you say... shower not only my husband but myself and our adult children and grandchildren. It was a breath of fresh air when something or someone would appear at the door to make us smile and realize we were not in this alone.I thank God for each and everyone that were there for us. I pray now that we as sisters may do the same for Elizabeth and her beautiful family ! The spirit of giving is such a blessing to them and the feeling is so wonderful...knowing somehow you may have touched their lives. Even when it is done without them knowing it was you !
Hugs...Kristy
"Live like you were dyin'"
Sis #2339
http;//www.myhealingthroughartstory.blogspot.com |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Dec 23 2010 : 2:24:54 PM
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Kristy, I am humbled by your post. Thank you. May I also take this moment to acknowledge the struggle you had to endure with your husband. A journey like no other..indeed...I'm pausing in this moment to celebrate the sacredness of you.
If I may, I would like to suggest to you dear Sisters that right now when things are their most intense, Elizabeth and her family are more than likely being inundated with just about everything, including pleas for them to tell others what to do and how to help. Trust me, it is almost impossible to direct people right now. The basics are huge...making meals, sending gift cards and gifts in general..etc..etc.. I remember thinking the one thing I would like people to do more than anything else was just MAKE THIS ALL GO AWAY! Anything other than that was bonus but secondary. I was grateful for every single card, word of encouragement, phone call, and gift. It was amazing...
But remember, the journey is often INCREDIBLY long and at first there's this deluge of attention and then suddenly when everyone thinks the dust has settled people feel LONG gone and back to their own lives while those of us on the journey are still mired in it longing for our old lives back that will never ever be.
Aria was diagnosed in January and I remember friends--dear dear trusted friends visiting around Easter. For those 3 months I had been taking Aria and the kids weekly to the clinic--sometimes daily. She was in chronic pain and had started vomiting several times a day. The threat of fever and a mad dash to the ER was ever-present and I was functioning on pure adrenaline most of the time.
My friends wanted to help but didn't know how. These are women who know me inside and out. They kept wanting my direction and I couldn't give it to them. They wanted to help but not intrude and I was basically in the 'mind' place of, "I don't care..none of it matters and yet everything matters." So, they just decided to ignore me and do..they cleaned my fridge..went through my cupboards, played with my kids..It was amazing. BUT more than ANYTHING else they gave me permission to break down and sob. They didn't try to fix the problem. They didn't try to make me happy. I was so sorrowful on the eve of Easter that I couldn't muster the energy to put out eggs for the kids to find...I was heart-broken about it too..I felt this weird guilt congealing with understanding that I can't help my circumstances and it's ok that I don't have it in me to put on Easter. Still, it was confusing..how hard is it to toss a stupid bag of easter eggs in the air and let them fall where they may? However easy or hard it was, I didn't have it in me. These friends of mine took over. They put on the most magical Easter ever! For them it was pure fun. For me, it was a gift. For my kids it was business as usual and that was so reassuring and comforting.
What I'm trying to say in my very long winded way is mark your calendars...in 3 months time this family will need you as much then as they do now...6 months from now even more so...and so forth.....
Golly, being able to write to you all about it now is so cathartic for me. We are STILL on the journey. Aria is terrific but every month I feel as if I have to turn and stand before the beast, bow and then attempt to spit in its eye! It is awful BUT it could be a whole lot worse and I am beyond grateful that it isn't...
Farmgirls, you are the BESTEST of the BEST!!
my love to you always!! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
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Annika
True Blue Farmgirl
5602 Posts
Annika
USA
5602 Posts |
Posted - Dec 23 2010 : 2:25:57 PM
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Beth, you are especially in my thoughts today on the eve of Christmas Eve, when you should be home with loved ones. My heart goes out to you and your family and especially Jacob. Lean on us, we are here for you.
Love and Light
Annika
Sister #13 |
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solilly
True Blue Farmgirl
726 Posts
Lillian
Williamsburg
Virginia
USA
726 Posts |
Posted - Dec 24 2010 : 08:11:31 AM
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Life sometimes seams so unfair. We can only hope and pray that we can understand what God has in store for us. There is a reason for all of it I hope and pray that we can understand. The best we can pray for is no body pain for the child. Love, Hugs, kisses and an understanding of Gods love and doings. May the love of God and the season of it always be with you and your family. Lilly 
learning the life I always wanted. |
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nubidane
True Blue Farmgirl
2971 Posts
Lisa
Georgetown
OH
2971 Posts |
Posted - Dec 29 2010 : 07:55:38 AM
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I have been following daily updates on both Elizabeth's & her mother's blog, & here is the latest.
http://trenchesofmommyhood.blogspot.com/2010/12/all-eyes-on-us.html#comments
Please pray for all,in particular for Elizabeth. She has not left that baby's side since he was admitted last Monday. She is clearly worn out, & needs some solid rest and a homecooked meal for sure. |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Dec 29 2010 : 09:11:50 AM
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Elizabeth, I do hope you have made those descisions that have been heavy on your mind. I just read the updates and was glad to see it is the "good" kind. I will be praying for Jacob as he goes through all his chemo and radiation. And for you as you drive those 2 hours each way to the hospital for so many weeks. My heart goes out to Jacob and his family.
Kris
Happiness is simple. |
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Cindy Lou
True Blue Farmgirl
2325 Posts
Susan
Lonsdale
MN
USA
2325 Posts |
Posted - Dec 29 2010 : 09:44:45 AM
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Dear Elizabeth,
prayers are with you, Jacob and your whole family for strength and healing.
We don't have answers about why cancer affects the lives of innocent your children. Maybe someday we will be able to avoid it, but for now it is a matter of dealing with the day-to-day challenges that are thrown at you. Let faith help you through this.
Please keep us posted.
Susan
"Tell me, what is it you plan to do with your one wild and precious life?"
Mary Oliver |
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LindaJo
True Blue Farmgirl
650 Posts
Linda
Fargo
ND
USA
650 Posts |
Posted - Dec 29 2010 : 10:55:17 AM
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Elizabeth
Very grateful to hear the news of the lab reports. Will continue to pray as you have many decisions to make and days to get thru.
Praying.....
Art cleans the dust of everyday life from the soul. Picasso |
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TexBetsy
True Blue Farmgirl
322 Posts
Betsy
Princeton
TX
USA
322 Posts |
Posted - Dec 29 2010 : 11:03:39 AM
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Elizabeth - I have started to post on here so many times and can't find the right words to express all I feel for what you're going through. I just pray for your comfort with the stress and decisions you are facing and for comfort and complete healing for Jacob.
Betsy
"God does not command that we do great things, only little things with great love" Mother Teresa |
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eggfarmgirl
True Blue Farmgirl
253 Posts
Kristy
Melvern
KS
USA
253 Posts |
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nubidane
True Blue Farmgirl
2971 Posts
Lisa
Georgetown
OH
2971 Posts |
Posted - Dec 29 2010 : 6:05:59 PM
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Kristy
I was just getting ready to post this. I cannot believe that the docs lead her to believe that the Wilms was the "good" kind, only to retract and call it the "bad"
Prayers are needed more than ever.
Elizabeth, know you and all of your family are loved.... |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Dec 29 2010 : 7:23:53 PM
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Did I miss a post somewhere about doctors saying good kind of Wilm's tumor and then saying, oops not so?? I ache just to even think about it.
But my dear friends, here's the thing; there is NO cancer that is good. We know this and trust me, I understand why people use this terminology. We have to stay positive and hopeful. I was told that if Aria was going to have to get cancer then the one she got is the one we want. It's the good kind of cancer--meaning treatable with a fairly positive prognosis. Yeah. 2 1/2 years of chemo with unknown long term affects, countless spinal taps with injected chemo, chance of relapse with a poor prognosis. Relapsed leukemia is grave. This is the good kind of cancer.
Ok. I get why we have to think of it so positively and for the majority of kids it really is. For the majority of kids with Wilm's tumor, the prognosis is very good too.
But the nitty gritty truth that we must face is this:
~Elizabeth and Jacob are day 9 going on day 10 in the hospital with only a 'may' be able to go home tomorrow. This is a thin thing upon which to cling and if Elizabeth is anything like me, she's hanging onto to it for dear life. That was yesterday and I'm assuming they are still inpatient since he's going to begin radiation tomorrow.
~Jacob begins radiation tomorrow AND possibly chemo. This is where the nightmare in many respects lessens and darkens. The reality of cancer becoming a full-time occupation sinks in but the reality of cancer and its wickedness is magnified and in technicolor. We are wide awake living our greatest fear and every single moment is tainted with that fact.
~6 days of radiation. Absolutely no picnic.
~they live 2 hours away. Do they go home? Do they stay? Is there a Ronald McDonald house? Will they have to stay in a hotel like many families have to do?
~The juggle is enormous and absolutely and completely all consuming.
I know you know all this and I certainly don't mean to lecture but if I may....
Prayers are essential. Acknowledgement is paramount. Presence is everything. Involvement is key. We all want Jacob to be healed but to reach the summit of that wish will be a battle that can hardly be articulated. So often what happens here is that we start to get overwhelmed by what's happening and we don't know what to say so we become silent. PLEASE don't.
Trust me, there's nothing to say that will help and yet everything said helps. It's the strangest paradox and I can't explain it other than to say that I wrote hundreds and hundreds of updates about Aria to hundreds of people. At first I got dozens and dozens of responses, which was so wonderful because it helped distract from the reality and the daily grind of it all. It also made me feel enveloped by so many loving hands. 2 1/2 years is a long long time to be focused and consumed by a single thing. I knew people would fade into the background. I knew some would not be able to face it anymore. I knew others would stay the course. As time went on the responses got fewer and fewer. "Is anybody reading anymore? Am I being totally one-sided? Does anyone care? Were thoughts that rambled through my mind. I knew it was folly. I knew people cared. I knew they cared so much they didn't know what to say. But I have to tell you, when people said, "I don't know what to say" I felt more connected than if there was nothing.
Acknowledging Elizabeth's highs and lows are HUGE! I remember being so frustrated and angry at times. It's hard to know where to put that. It's even harder to share it because the risk involved is great. Oh I know you think it's ok to let it out but you'd be surprised how many hurtful things can be said because people are so uncomfortable with the darker, less inspiring, full of drudgery aspects of the journey. It is nearly impossible to sit comfortably with 'there is no fix to this'. It's like sitting on a bed of nails and you forced there.
Oh Ladies, I know I'm repeating myself. Forgive me if I've usurped this post with my own stuff but the parallels of Elizabeth's journey and my own are so great that I feel compelled to share some of what I've learned. She mentioned the dangling idea that 'treatment' could go on for 6 - 8 months after the first 6 weeks of treatment. She mentioned being nervous about the flu vaccine..Do I-don't I? Enroll him in a study that may help or hinder? These are impossible decisions and she's handling them so boldly, so honestly, so head-on! I'm in complete awe of her. The amount of information she is having to take in and all the things she is having to let go, release and grieve are absolutely enormous.
Farmgirls come to the aid of friends like no other! I swear. So my sisters--gas cards, restaurant gc, visa credits are incredibly helpful. The little added expenses are mind boggling and anything to off-set that would be great! books on tape for those long drives....these are just some ideas for things do to over the long haul.
One last thing: Every single time I posted a lengthy update on this forum for Aria, I was inundated with positive good vibe. So many prayers, so many warm wishes, so much acknowledgement and encouragement. I wish I had it in me to somehow thank every one of you individually so deeply have you penetrated my soul. This forum was a life-saving bit of connection that inspired me and gave me the feeling that I was safe. You are doing just the same for Elizabeth now. My hope is to simply return the favor to another sister who must stand tall and face the beast just as I have.
~julia hayes
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
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eggfarmgirl
True Blue Farmgirl
253 Posts
Kristy
Melvern
KS
USA
253 Posts |
Posted - Dec 29 2010 : 7:53:29 PM
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I copied this from Elizabeths blog... there was an update after the link I posted earlier. Some of you do not go to her blog so here is what she wrote..
Turned upside down
Just as we were about to leave the hospital today the doctor came back in to tell us the second tests results were in and it is NOT the favorable type of Wilm's. This type of cancer is much harder to treat and Jacob will be needing more aggressive treatment.
We are home now. We will be home until Monday when he starts chemo (probably in-patient). He needs even more prayers now, as do we. Please add him to all your prayer circles.
OH Sisters....get on your knees..pray like never before ! Call every prayer partner or start every prayer chain you can reach. I have been in her spot hearing it is the bad kind of cancer. All we had was prayer !! My heart is breaking for this family !!! You sisters... rock !!
Hugs...Kristy
"Live like you were dyin'"
Sis #2339
Scattered Prairie Gals Chapter
http://www.myhealingthroughartstory.blogspot.com
My studio Blog- http://www.lostcreekstudio.blogspot.com |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Dec 30 2010 : 08:10:57 AM
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Kristy, thank you so much! I finally went to Elizabeth's blog and spent some time figuring out how to leave a comment and get those updates via email. I'm getting more and more computer savvy YAY! I'd been reading everything here, reading her blog posts and communicating with her via email. Now I'm plugged into her blog..Ahhhhh getting the scoop from all sides is strangely reassuring.
This news. I'm breathless. I don't knot what to say. When I first proof read this note, I caught the "knot" typo but decided it was actually a subconscious thing. This is exactly how I feel...all tied in knots over not knowing what to say or do!
Only Elizabeth can tell us this but I wonder if the news of Jacob's tumor went down something like this: Elizabeth desperate to know something about those path reports..anything..they get the preliminary reports and it looks good but they're waiting for the final pathology to come in. So of course they're going to give her the good news with the caveat that they are not moving forward until the final path comes in but so far so good. PHEW! Final comes in and KABOOM! Devastation all over again. This happened with Aria. Not a similar outcome but just the process..They suspected it was ALL (type of leukemia)..all signs pointed in that direction but there were all kinds of other tests and factors needing to be determined..gene testing..risk (high, standard or low) etc..etc...
It could be that the doctor was a incompetent leading them on but it's hard to say at this point. The process of determination really is just that..a process. No denying it though, it's hard and I'm sitting here full of sorrow.
Kristy~ you KNOW..hearing it's the bad kind....oh my...I can hardly breathe! thank you for sharing this with us..for sharing yourself with us...
My love to you..my love to all ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
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Libbie
Farmgirl Connection Cultivator
3579 Posts
Anne E.
Elsinore
Utah
USA
3579 Posts |
Posted - Dec 30 2010 : 10:25:10 AM
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I'm here for you, Elizabeth, as I have been for Julia as well - but just quietly, in my own way, connecting with the divine and sending every possible good wish, prayer, energy, hope to you and little Jacob. I cannot bear to truly think of what it must be like. My heart breaks, and yet I know it is NOTHING like what you are experiencing. Only a mother of the child could know that. My love to you......
XOXO, Libbie
"Farmgirl Sister #10," and proud of it!!! |
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eggfarmgirl
True Blue Farmgirl
253 Posts
Kristy
Melvern
KS
USA
253 Posts |
Posted - Dec 30 2010 : 3:35:32 PM
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Sisters... I am lead to say a great big YES YES YEs to Julia's post. She is right on the mark.I walked the same path with my husband year and a half ago. Julia said it well.. I posted to hundreds of people and felt so blessed. As time went by fewer comment or sent cards etc. You feel alone in the desert during that time. Keep praying... keep sending them little things as Julia mentioned. It is overwhelming being that far from the hospital. We were an hour and a half away from out cancer center. We were blessed in the fact that our daughter is an RN at the same center and only lived 30 minutes away. We could stay with her and her family. Elizabeth does not have that option. So... help in whatever big or little way you can! I am so amazed by this awesome sisterhood and the love,prayers and giving spirit of farmgirls !! I am counting my blessings and count each of youas one of those !! Blessings to each of you.
Hugs...Kristy
"Live like you were dyin'"
Sis #2339
Scattered Prairie Gals Chapter
http://www.myhealingthroughartstory.blogspot.com
My studio Blog- http://www.lostcreekstudio.blogspot.com |
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HealingTouch
True Blue Farmgirl
3448 Posts
Darlene
Kunkletown
Pa
USA
3448 Posts |
Posted - Dec 30 2010 : 4:22:45 PM
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What devastating news. My heart is just breaking. Spot on Julia and Kristy. We need to lift this family up and pray unceasingly. Put them on all prayer chains and support them. We are a loving and supportive team we Sisters! We all may not be able to send alot of money but alot of US can send some money to help ease their stress. Let' make a commitment and start with whatever you can. We have to start somewhere. My first will go in the mail tomorrow am. Let's remember Becca and Joe too. Their address was posted on another page by Elizabeth but here it is again:
Flesher Family
708 E. Butler St.
Manchester, Ia 52057
Blessings and Peace,
Darlene
Sister 1922
God first, everything else after!
DNA doesn't make us sisters, Love does!
The road to a friends house is never to long!
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nubidane
True Blue Farmgirl
2971 Posts
Lisa
Georgetown
OH
2971 Posts |
Posted - Jan 02 2011 : 6:01:54 PM
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PLease keep Jacob, Elizabeth, and their entire family in your prayers.
After a brief stay at home, Jacob will be back at the hospital tomorrow for treatment, and the cancer is the more aggressive type.
Farmgirl strength needed!!!!
Elizabeth, you and your entire family are loved and being showered with prayers!!! |
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CountryBorn
True Blue Farmgirl
1545 Posts
Mary Jane
New York
USA
1545 Posts |
Posted - Jan 03 2011 : 2:46:30 PM
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My prayers and my thoughts are with you Elizabeth. You and you precious son and your whole family. You are on my mind so many times a day. My heart breaks that all of you are going through this nightmare. May you find some peace and comfort in all of us and especially in each other. I know Julia will be a true blessing to you. You are a wonderful mother Elizabeth, you will know the right things to say and do for your son. God Bless and keep all of you.
Hugs and Blessings,
Mary Jane
There can be no happiness if the things we believe in are different from the things we do. Freya Stark |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Jan 03 2011 : 2:52:55 PM
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Elizabeth, I just want you to know that your son is in my prayers right now. And you also. I have no idea what he is going through. I'm so sorry.
Kris
Happiness is simple. |
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Roxy7
True Blue Farmgirl
1083 Posts
Robin
Denver
CO
USA
1083 Posts |
Posted - Jan 04 2011 : 7:56:54 PM
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| Prayers sent. |
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Meg
Moderator/Farmgirl True
974 Posts
Meg
Idaho
USA
974 Posts |
Posted - Jan 05 2011 : 12:31:46 PM
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Just thinking of you Elizabeth. Hugs and much love to you today. My heart is with you.
MaryJane's daughter,
Meg
megan@maryjanesfarm.org
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babysmama
True Blue Farmgirl
931 Posts
Elizabeth
Iowa
931 Posts |
Posted - Jan 06 2011 : 4:21:19 PM
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You ladies are amazing! E-mails, prayers, cards, and little gifts have been pouring in. It's such a "warm hug" to arrive home from hospital stays or being gone all day for treatments to find these things waiting for me in my inbox/mailbox. Thank you all so much.
Jacob finished day 4 of radiation today...so just 4 more days to the lungs and 7 more to the abdomen. He was getting sick from the radiation but giving him the anti-nausea medicine before treatment worked today, so I hope that continues to help. He is extremely tired...but with radiation, chemo, and surgery just 2 1/2 weeks ago there is no question that he would be!
He had his first dose of chemo on Monday...three drugs. He did great and didn't get sick. The bad part is they had to wake him up every two hours to check his urine output...not fun for any of us! The next two weeks he will receive only one drug on chemo so hoping that goes over easily. The 4th week he will need a 4 drug dose so we will be in the hospital for four days. Luckily, this powerful pair will only be given four times during the 30 week treatment.
We are looking forward to having a 2 day break this weekend!
-Elizabeth |
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texdane
Farmgirl Legend Chapter Leader Chapter Guru
4658 Posts
Nicole
Sandy Hook
CT
USA
4658 Posts |
Posted - Jan 06 2011 : 5:15:44 PM
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Elizabeth,
Hang in there. You're all in my prayers. Thanks for keeping us posted.
Nicole
Farmgirl Sister #1155
KNITTER, JAM-MAKER AND MOM EXTRAORDINAIRE |
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Hogs & Quiches & Prayers Round-up: My 5 year old has cancer |
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My 5 year old has cancer
