Sunday, March 27, 2011

Across the Ocean

www.reecesrainbow.org/presley Thank you for your prayers, thoughts, and concern over the past two years. Maren is nearing the two-year anniversary of her diagnosis, and she is 114 days out from her last day of chemo (not that I'm counting or anything). Her routine of meds, glucose monitoring, and throwing up in the van has almost become just that - routine. It is tiring, but most of the time it just seems like part of life. We are more than ready to finish, to see how she grows and develops more coordination off the chemo, and to see her really get out into world after so many months of semi-isolation.

I'm pretty sure Maren has very little understanding that her life is about to take a turn for the better as we have tried to downplay, as much as possible, the fact that she even has a limiting diagnosis. By the time is she done, she will have spent more of life on chemo, than off of chemo. She is looking forward to not having any more "port pokes," and she desperately wants to visit her grandparents, great grandparents and extended family, and see the beach (I finally had to break the news to the kids that the Allegheny is not an ocean.). Sadly, the only time I've traveled to see my family on the West Coast since moving to PA was for my grandmother's funeral service last spring. Thankfully, my family has been able to come to us. We're working on these family visits with much anticipation. Maren will also get to have a wish granted by the truly amazing Make-a-Wish foundation. I can't wait for us to get away as a family and to see the kids get on some amusement park rides without even wiping down the seats first! We have a lot to be thankful for, and a lot to look forward to (apologies to grammar buffs there).


Unfortunately, many children don't have wishes granted, school to look forward to, and a "normal life" ahead of them. That is, if they even make it through treatment. I am writing today to advocate for a little boy in an orphanage in Eastern Europe named "Presley." Presley has leukemia, and from what we know he is likely staying at the hospital alone. He is enduring intense chemotherapy without a single person by his side. Nobody to fight for him, nobody to comfort him, nobody to alert the nurses that he feels warm, that he is getting a rash from blood products, or that the IV line has an air bubble. And nobody to bring him pizza with ketchup between meals. One mom that I had the privilege of speaking with who adopted her son from Eastern Europe when he had leukemia told me the hospital was as sanitary as a gas station bathroom.


Presley needs a family. He needs a family soon. If you know anyone who is considering international adoption, please tell them about Presley and about Reece's Rainbow. Reece's Rainbow is a non-profit organization that advocates for orphans all over the world with Down Syndrome and other special needs. Jeremy and I are planning to adopt in the future. We made commitment to start the process next April, but when we heard about Presley we contacted a social worker immediately. We knew it would be a huge change of plans, and delay of the start of our "normal life," but we felt we couldn't let him languish in a hospital and endure these treatments alone. We knew it would take a lot of prayer and a lot of fundraising, grant application-making, and emotional support from family. Unfortunately, because Maren's treatment doesn't end until mid-July, we just couldn't make it all come together.


I know it sounds crazy. Who would sign up for this? Who would sign up to go across the world to adopt a child with cancer, and then return to hospital visits and a couple of years of major germ patrol. But God is good. Presley is a child of God. God knows about him and loves him more than anyone could. That is the ultimate comfort in knowing he is loved by God, but it isn't a reason to not fulfill our calling to be the hands and feet of Christ - to reach out, on behalf of this child and offer up prayer that he will be comforted, healed and find a family. One of the major barriers to international adoption is financial. With immigration fees, notary and application shipping fees, home study costs, facilitator fees (on the Ukrainian side), airline tickets, food and lodging, the total cost to adopt Presley will probably be between 23,000 and 30,000 dollars. I have seen other families on Reece's Rainbow raise this money for many children. It is not easy, but it can be done. We have been putting money into Presley's account a little at a time (as have a few other generous individuals), and we will continue to do so. We hope that if it is on your heart to donate to Presley's grant fund, that you will do that. All donations to Reece's Rainbow are tax deductible and can be made through Paypal (seen on his webpage) or by check (sent directly to Reece's Rainbow indicating that it is for Presley's grant fund). I encourage you to check out the Reece's Rainbow website and learn about the work they do, see the families who have committed to adopt special needs children into their family as well as the families who have already been united. You will be encouraged that God has a plan for everyone.

Thank you so much for reading!


Love, Emily

P.S. - If you feel it's appropriate, please feel free to pass this on to anyone, put a link to it on your blog, facebook, etc. . .

Saturday, August 14, 2010

More of an Update!!


Hi Everyone!

Well, I got some more specific news on Maren from my aunt and Emily...

Last week, Maren was hospitalized again with an unknown virus, which they thought could be bone marrow suppression. She had a transfusion while there and is now home doing better. Her chemo, however, has been cut in half and is now being timed differently. This helps with her side effects, but is not as good in keeping the leukemia in remission. So, she is now at a higher risk for relapse. The chemo is also causing liver damage for Maren. Emily and Jeremy hope that that if her liver recovers, she can resume her previous chemo plan.

This week, Maren is feeling much better and happier. Please continue to pray for her body to heal and recover!!



THANKS SO MUCH!!

Friday, August 13, 2010

Sorry to leave you hanging...

but I've (Alison) only had updates on Maren here and there through texts from my mom. Half the time, I don't really even understand the medical jargon of what's going on, sorry! Being across the United States from Emily and family, I don't get all the details of what's going on. They are all super busy and overwhelmed right now with her condition.

From what I know, Maren's been in and out of the hospital. She is having severe problems with her liver right now. She was just in the hospital last week with some kind of bone marrow suppression and she is losing hair. This is not a cause of chemo as she's been off her routine chemo schedule due to her health problems.

Basically, she is pretty sick right now. The Wingard family is struggling again and feeling down with her condition. They really need some love and support!!

PLEASE...PLEASE keep ALL of them in your prayers!!

Pray for little Maren!!

Pray for her mommy and daddy, Emily & Jeremy!!

Pray for her big brother, Elijah!!

Feel free to leave some comments with encouraging words as I know Emily gets them!!

WE ALL LOVE YOU WINGARD FAMILY!!!
You are in our Prayers!!

PS...I will try to update with any news sooner!

Tuesday, July 13, 2010

little update

I am still waiting for more exact updates on Maren. However, I did find out that the doctors discovered Maren has a very rare genetic recessive gene disorder. This is causing a lot of the problems with her cancer and chemo treatments. She is very sick and is not doing very well right now. So, please-please pray for Maren and her family! Update: Thanks to google, a resident for a daddy (Dr. J), and a tireless fellow (Dr. R) it was determined that Maren almost certainly does not have a genetic disorder, but is experiencing a side-effect of the 6MP that causes low blood sugar. We can't know for sure until she is done with chemo next summer, but as her mommy, I'm pretty certain - based on the timing of the meds given and the timing of the low blood sugar episodes.

Friday, July 9, 2010

Maren needs some prayers

Hello Everyone...

This is Alison, Emily's cousin. It's been awhile since anything has been posted on here. But, I am making a post now to request prayers again for little Maren.

Unfortunately, she is back in the hospital right now. They are still running tests on her, so I do not know exactly what is going on . But, I do know that she is pretty sick and not doing well right now. I also know that Emily is very tired and sad. My aunt is currently on her way out to be with them and help out. After a long haul, they are all again in need of some love, support, and prayer.

I will post more details when I get some...

Thanks so much!

Saturday, December 5, 2009

hello out there . .

The Wingards are out and about in the world
Concrete dinosaurs are so fun, and so anc-friendly. Every town needs one.


Am I scared or cold?



Driving through Hartwood Acres Celebration of Lights. It was a HUGE hit with the kids. We'll definitely be back.


Hello again, faithful friends. Thanks for following the blog, and for continuing to keep us in your prayers. I apologize for not posting for such a long time. After taking a few breaks from the blog, I decided it was good for me to have some time away from the processing that's necessary to update here, and to write about our life. When life is busy with the activities of caring for two young children, I am often able to keep cancer out of my mind. Blogging requires an acknowledgment of the situation that is good, but can be difficult to do over and over. I don't ever go very long without thinking about Maren's leukemia and the accompanying "what-ifs" (maybe 4-5 hours, longer if I'm sleeping), but recently I have felt better about keeping that thought process to a minimum. I will continue to post, and I think it may take some time to get back to posting regularly, but I do want to do it. I love that so many people care enough to stay updated, and watch my little girl get stronger every day. And I owe you a huge thanks for all the prayers during Maren's Delayed Intensification. We actually did make it through with zero ER visits. Yay. Maren is now about 1/2 of the way through Interim Maintenance II, and about 4 weeks away from starting Long Term Mainentance. Complete isolation is no longer necessary, although we are still being extremely cautious. I'll post some pictures of a few recent activities and outings below. Um, or as google blogger may have it, above. love you all - emily

Sunday, November 1, 2009

Happy Halloween!

Love, Turtle Boy and Miss Fairy PrincessPosted by Picasa

Monday, October 26, 2009

We're still here, I promise




Sorry for not posting! I didn't realize it had been 5 days until a friend texted me yesterday. We are at home. Maren looks awesome. According to her labs she is likely past rock bottom - still neutropenic, and low enough hemoglobin to warrant a transfusion if she starts to appear symptomatic, but we think things are on the upswing! Yay! We're still on isolation because of her vulnerability to infection, but we only have 1 more week to go! It should be an easier week for me, and fun for the kids because my mom will be staying with us. She suffered through a week of isolation at a hotel before we picked her up on Saturday. The kids and I enjoyed picking up her coffee at the drive through Starbucks and dropping it off every morning. So I guess we're finding ways to stay busy.Posted by Picasa

Wednesday, October 21, 2009

13 more days to go, still hanging in there

Still doing well. We're at home - and very happy about that. Maren is going strong, she almost doesn't even look sick. She's just slightly pale, and she "spilled her hiccups" in the wee hours of the morning and then again this evening, but she is giving it everything she has. I just hope it's the chemo making her sick to her stomach and not some icky virus. Please pray that she continues to be happy and strong. Thank you!

Oh yeah, about the video, Google blogger was trying to upload it for 2 hours with no success. I'll keep trying.

Monday, October 19, 2009

Another good day.

No hospitals. no rashes. no fevers. nada. A very good day.

I was going to celebrate by posting a cute video montage, but after a few hours of working on it(i'm new at this stuff) I clicked on the wrong button. So I have high hopes to get it up tomorrow night. Maybe I found another good isolation hobby =).

Sunday, October 18, 2009

Delayed Intensification Day 40/56


Maren still looks wonderful. She had her last dose of Ara-C on Friday, and her port was removed without incident. The oncology labs ran the bloodwork, and her ANC decreased from 1200 to 400 in just 4 days. That's a pretty dramatic decline, and we expect her numbers to bottom out sometime around next Friday. Her red blood cells and platelets were a little low too, so we'll keep an eye out for indications that needs to go in to clinic for a tranfusion. That said, I promise she looks awesome, she's running around and playing and just being 2. Praise the Lord. She'll get 6TG tonight and tomorrow and then she's done with the meds for this phase. Hooray. I'll keep you updated on her progress this week. Thank you, thank you, thank you for all of the prayers. Posted by Picasa

Thursday, October 15, 2009

Grape Capers - continued

In reverse order, because who doesn't like skipping ahead to the end once in a while?
P.S. - If your names are not Grandma, Grandad, Deda, or Baba you may not entirely appreciate the multitude of pictures of the kids from every angle. But then again, they are pretty cute.


















Wednesday, October 14, 2009

Delayed Intensification, Day something

We just keep on keepin' on here. Maren looks good - so good that it makes very nervous to even say it. I can tell there are times when she's not feeling her best, and she just wants to be held, but she is a trooper. We get two more visits from the home nurse, and then finish out the 6TG on by Monday night. After that we just wait through the drop in counts and pray that she stays healthy. Thanks for checking up on Maren and for continuing to pray.

Monday, October 12, 2009

Delayed Intensification , Day 34/56

Tomorrow at 10:30 Maren has her final clinic appointment of this phase. She'll get Ara-C through her port and leave with it accessed for the home nurse to come Wed, Thurs, and Fri, of this week. She'll also take her 6TG at night for one more week. When that is finished next Tuesday, we'll be on isolation for another week/10days?, because her counts are expected to be at the lowest point sometime between this weekend and the following weekend. She looks great right now. I really hope she can get through these next few weeks feeling as well as she does today.

Saturday, October 10, 2009

My brother got married! And we went to the wedding . . . at home!

Complete with fancy clothes,
Dinner,


Flowers,






Dancing,






Babies,
A Candy Train (see "official wedding favors" below)


Games,



Official wedding favors sent from a thoughtful bride and groom,


(Elijah is especially thankful for the favors)
And a special message from Baba
and Deda

Congratulations Aaron and Justine! The wedding was beautiful. Justine was a gorgeous bride. Aaron was looking pretty sharp too. We missed you, and we love you.
A special thanks to Paul and Barbara Mouw, Eric and Heather Jenkinson, my parents and to my brother Noah for managing the whole video transfer, and to my sister-in-law Becky who, no doubt, managed three kiddos while they did it =).

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