Praying for Maren

Across the Ocean

2011-03-27T17:26:00.000-07:00

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. . .

More of an Update!!

2010-08-14T10:08:00.001-07:00

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!!

Sorry to leave you hanging...

2010-08-13T15:37:00.000-07:00

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!

little update

2010-07-13T07:51:00.000-07:00

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.

Maren needs some prayers

2010-07-09T22:00:00.000-07:00

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!

hello out there . .

2009-12-05T13:14:00.000-08:00

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

Happy Halloween!

2009-11-01T08:37:00.000-08:00

Love, Turtle Boy and Miss Fairy Princess

We're still here, I promise

2009-10-26T05:57:00.000-07:00

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.

13 more days to go, still hanging in there

2009-10-21T20:44:00.001-07:00

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.

Another good day.

2009-10-19T21:23:00.001-07:00

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 =).

Delayed Intensification Day 40/56

2009-10-18T17:44:00.000-07:00

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.

Grape Capers - continued

2009-10-15T17:44:00.000-07:00

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.

Delayed Intensification, Day something

2009-10-14T19:35:00.000-07:00

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.

Delayed Intensification , Day 34/56

2009-10-12T16:58:00.000-07:00

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.

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

2009-10-10T20:53:00.003-07:00

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 =).

Progress and hope

2009-10-09T17:01:00.001-07:00

Progress is being made. Maren had her port successfully de-accessed by the home nurse this afternoon. That means one less thing to bother her and one less thing to worry about. She seems to be doing very well overall. I noticed some slight peeling on the palms of her hands that I hope will remain minimal. I finally admitted to myself today that we have too much stress in our lives. I don't want to complain, because really we have it much better than most people in the world, but the stress of 2 little ones, Jeremy's residency and accompanying resident's salary(not that I'm not grateful that he has a job, but it sure would be nice to hire a cleaning service once in a while =), and med school/residency is such a long process in general I'm ready to move on), and Maren's illness/isolation/treatment schedule turns out to be quite a bit to handle. I really am trying to make the best of it, because we do have it good, and because I know full well that things don't always get better this side of heaven, but I am grateful tonight for my faith in God and the love we've been shown from the body of Christ, and the eternal hope we have. Nothing else would get me through.

Wingard to do list:

2009-10-07T16:14:00.000-07:00

1. Arrange pumpkins. Rearrange pumpkins. Hide pumpkins. Being isolated causes us to find some things much more interesting than they might be otherwise.

2. Find yet another use for the piano bench - arranging chemo supplies.

3. Get chemo treatment at home - complete with a real, live nurse, and our very own IV pole.

4. Make a permanent tribute to the free pass Elijah received from sweet Anika by painting chalkboards on the kitchen wall.

Delayed Intensification Day 28/56, picking up where we left off

2009-10-06T16:34:00.000-07:00

Maren had her big day at clinic. We left our house at 7:50 am and left the hospital around 3:20 pm. One long day. Her ANC was 1600 - a pretty darn good starting point for this phase. The LP went off without a hitch although she did require more sedation than usual. I guess some children develop a tolerance to the sedatives. She needed about 5 hours of fluids before she could get the Cytoxan.
Maren was so good while we were there. She had a few outbursts, but for being 2 years old and having parents who were trying to force her to stay in one place and not touch anything for fear of germs she was a real trooper. Dr. Ritchey, her attending physician/head honcho, stopped in to tell us that he tells all parents in this phase to be prepared for an inpatient stay - not necessarily in the next week or two, but by the third or fourth week. Talk about being the bearer of bad news. Ick. I'm still holding out hope for no hospital stays or inpatient visits. Ever.
Our little sweetie is in bed now. We still need to give her 6TG (she gets it every night for the next 2 weeks). It's another tricky one. She needs to go 2 hours without eating before she takes it, and one hour without eating afterwards. And she can't take it with milk or have any dairy during the three NPO hours. It wouldn't be such a problem if she weren't so attached to her milk. Tonight my plan is to wake her up and give it to her with juice and hope she goes back to sleep without crying for "milky." I'll need to figure out something because starting in January we'll do this every single night for 2 years with a drug called 6MP. We just got our delivery of ARA-C and the sharps container to go along with it. The home nurse will visit Wed, Thurs, and Fri. to push these meds through her port IV. One more day down. 27 more to go.

Grape Capers

2009-10-05T19:45:00.000-07:00

We managed to have an awesome ANC-friendly fall outing yesterday that even included making fresh-squeezed grape juice. I plan to post more of the pictures soon, because it was a very picture worthy event, and I was so excited to have a fall outing when I didn't think it could happen. So hooray for pumpkins and grapes and pie. We're getting ready for an early morning clinic appointment, so I've got to hit the sack. If Maren's ANC is high enough it will be a long day, but we are definitely ready to just help her get through these next few weeks and move into a new normal that hopefully will involve more friends, and trips and fun, and much less worry. Please, please pray that she is able to get through this easily. I know that it's a lot to ask considering the situation, but we know God is able.

Vacation

2009-10-04T07:52:00.001-07:00

Jeremy's vacation officially started yesterday, but I'm not counting that because it was weevil larvae day. We got off to a better to start this morning with an early morning trip to Dunkin' Donuts. Maren looks good again, and she was pretty happy with her donut, so now it feels like vacation. One good thing about Maren's break is that Jeremy will be able to go with us to her appointment, and be home for the week while she's on her new medicine. I always feel better when he's around to ask my medical questions. I'm sure it saves the oncology team more than a few phone calls from a worried mother. He definitely keeps me grounded as I would be likely to take her into the ER for so many little things just like I'd be the one starting the bonfire for the maggot room =).
Even though this wouldn't have been the type of vacation we pictured 6 months ago, we are going to make the best of it. In some ways I just want to look forward to when this will all be over in a few years, but I know that I can't live that way. There are no guarantees. There's no guarantee that things won't get worse with Maren, or any one of us really. I will be elated if we make it all the way through no worse than we are now, but if things turn out differently I don't want to have missed the days that I might wish I had back.

The good, the bad, and the ugly

2009-10-03T10:02:00.000-07:00

Maren woke up looking great this morning. She just looks healthy. It's something I never would have noticed without having a sick child, but it sure does warm my heart to see pink cheeks and a smile. She's been playing with Elijah all morning(okay so we're actually bribing him with cookies to play with her but whatever). We have a new drama in the Wingard house today so we're doing whatever it takes to keep them busy. Jeremy's idea to collect and roast chestnuts took us down a very dark path this morning. We were standing in the guest bedroom where we had decided to store the chestnuts (in pillowcases of course because, er, where else would one store food items collected from the ground?), and we were discussing how to gussy up the room with some new paint when we looked down on the floor and saw what looked like little white beans. With my cynical sense of humor I nonchalantly offered that they're probably just larvae. Upon closer inspection we discovered I was right. I guess I've seen Man v. Wild a few too many times. Anyway the nasty little creatures, known as Chestnut Weevils, were all over the room and everything in it. I suggested we burn the room contents a la the Velveteen Rabbit, but J tells me that's not necessary (he's so lucky I trust him after these kinds of stunts =)). We've cleared them all out, but we're still on the lookout for rogue maggots. So, if any of you ever come to stay with us, you have fair warning that you may want to sleep with one eye open.

looking better

2009-10-01T10:08:00.001-07:00

Thanks for praying. Maren's temp was perfect this morning, and the rash definitely looks better. I had a hard time looking in her mouth, but she did eat so that's a good sign. I don't think she's feeling her best - she seems very fussy and easily irritated. I just put her down for a nap and I'm hoping that will do the trick.

update

2009-09-30T19:17:00.000-07:00

Her temp seems to have settled down a little, but she developed a raging yeast infection over the last couple of hours. This is the first time she's told me her rash hurts in a couple of months. We also noticed a sore on her tongue, and we're really hoping it's not just one of many more to come as is often the case in ALL patients. Glad to be at home still - hoping it lasts.

a little fever

2009-09-30T11:07:00.001-07:00

Temp is hovering around 100. I am going to put her down for a nap and pray that it goes back down. I am really hoping that she gets this week free of chemo and illness.

Delayed Intensification, Day 28/56, Time warp

2009-09-29T10:25:00.000-07:00

I packed up 2 large bags this morning in anticipation of a long day at clinic. I realized I might have overdone it when Dr. Randy mentioned that I looked like I was going on a camping trip. It turned out that I really didn't need anything, because Maren's ANC was only 400. This means she is neutropenic and very vulnerable to infection, so we won't start the second half of DI today. We go back next Tuesday when they'll run her numbers again. If her count is high enough we'll pick up with Day 28 at that time. I'll still keep you updated this week even though it's like a treatment time warp. Please pray that she stays healthy and that she is able to rebuild her immune system. Thanks everyone.

Quick update

2009-09-27T19:19:00.000-07:00

The fever has subsided (woo hoo - no ER), but the rash is still iffy. Elijah and Maren actually did sleep in Elijah's bed all night long, although I'm thinking they didn't sleep that well based on Elijah's decision to voluntarily go to bed at 5:30 this evening. I guess they were having too much fun.
Maren has a clinic appt. on Tuesday morning. If her lab values are high enough she'll start the second half of DI with a lumbar puncture and almost a full day of IV fluids (enough that the Ctyoxan won't be toxic to her system), and come home with her port accessed so that a home nurse can give her IV chemo over the following 4 days. She'll also get chemo in tablet form every night for 2 weeks. Please pray for her continued health during this time, that she won't get too curious and pull her port needle out, that the port will not get infected, and that she won't need any ER trips or hospital admissions. Please pray for my peace of mind as I tend to get really nervous about her temperature changes (the Ara-C that she'll be getting from the home nurse can cause fevers on its own). Thank you so much for praying.

Home sweet home . . .

2009-09-26T19:36:00.000-07:00

Maren seems to have moved beyond the steroid effects; she is pretty much back to her old self and we are so glad. She and Elijah have been spending a lot of time together lately, and tonight they decided to try a sleepover in Elijah's room. Cute.

Her temp. was a little elevated today, but not enough to warrant a trip to the ER, and the diaper rash is flaring up. Please pray that her body will recover quickly from whatever is causing this flare up and that we'll be able to stay home.

Delayed Intensification, Day 21/56

2009-09-22T20:51:00.000-07:00

All is quiet on the homefront. Steroid detox is slow-going, but I know it will happen. Maren has thrush in her mouth - a fairly common occurence for these little ones with weakened immune systems. She now has a new yellow medicine which she seems to find quite tasty (thank goodness since it's 4 times a day). Please pray that this will take care of the problem and not turn into the infamous mouth sores I've heard so much about. I am looking forward to a good clinic-less week as she clears out the steroids and gets back to being her happy self.

Delayed Intensification, Day 20/56, giving steroids the smackdown

2009-09-21T18:37:00.000-07:00

Maren had her last dose of steroids tonight! Though she's too little and too cranky to understand it sometimes, things are looking up. At least we hope so. I recently read a quote from a little boy who had undergone a bone marrow transplant (BMT in leukemia world), and it was something to the effect of "Smile today, because tomorrow could be worse." Ha. I loved it. Anyway, I hope I'm not getting ahead of myself by practically having a party in my head to celebrate the end of steroids(for the next 3 mos), not knowing what's ahead for her with the upcoming Cytoxan and Ara-C, but we might as well enjoy the good moments while we have them. The picture above is Maren sporting her new "stripey hat" knitted by a sweet friend and getting ready to go through the McDonald's drive through. She gets these cravings for french fries, and even though I try to talk her out of it the steroids beat me every time. Who knew I could I be outwitted by someone else's medication?

Swings and Haircuts

2009-09-20T10:49:00.000-07:00

Need I say more?

Collecting chestnuts. Jeremy is determined to collect them all and roast them.

The haircut twins.

We had the best weekend. Our friendly neighbors offered us the swingset that their children had outgrown, so yesterday Jeremy and his dad disassembled it and then set it up in our yard, and Maren thinks it's the best thing ever. She's actually been in a great mood most of the weekend. Thanks for praying everyone.

Delayed Intensification Day 17/56

2009-09-18T20:32:00.000-07:00

I gave Maren her 8th dose of steroids. That's 8 out of 14, so that means we are over half-way there. Sweet.

2009-09-17T16:23:00.000-07:00

I didn't expect the steroids to affect Maren so much in terms of her mood. I figured 28 straight days of steroids during induction would have been so much worse than 2 seven day pulses with a week off in between. It was worse, but it's getting pretty bad now. Rough day here. I haven't checked her glucose levels. The docs said we don't we need to unless she is symptomatic which she doesn't seem to be at this point. Hopefully we just need to get through 4 more days of steroids plus the time it will take for her body to detox.

I am thankful she can still walk. She doesn't necessarily want to all the time, but she can. I am thankful for two friends who stopped by today to bring meals and chat outside. I am thankful we are home. I am thankful for a thoughtful friend who stopped by the other day with a Netflix gift subscription - while I was on hold with the hospital and insurance company earlier I was able to watch the better part of a documentary. I am thankful for a sister-in-law who sent a funny email that made me laugh today. I am thankful that my children have awesome grandparents and great-grandparents to give them memorable birthdays. I am thankful for friends who unexpectedly send packages for the little ones that light up an otherwise dreary day stuck at home. I am thankful for a MOPS group that is 5 months later still heck-bent on providing meals and prayers. I am thankful for all of you new readers and the old faithful readers who take some of your time(which we all need more of) to check up on Maren, to think of us, and go through this with us in thought and prayer; thanks to all of you, I have not, even for one second, felt like we were doing this alone. I am thankful that God is good.

The house is a disaster - post birthday party mess, and dishes galore due to Maren's current food obsessions, and I just walked into the kitchen to see that Elijah had taken a crayon to the wall and drawn gigantic ocean waves. I didn't lose my cool though -admittedly rare for me- and I gave him a "pass" after reading about an 8-year old girl named Anika who passed away from relapsed ALL in July. Her dying wish was for parents everywhere to give their children a free pass the next time they misbehaved. So Anika, I now have a lovely ocean scene in my kitchen. Thank you, I just might enjoy that.

Elijah Blaine

2009-09-17T06:31:00.000-07:00

Happy 4th Elijah!

Basically the birthday was pretty much a dinosaur and Crocodile Hunter fest. Good times in the Wingard household.

Sorry I didn't get these up last night. I fell asleep earlier than I planned. Taking a little rest on the bed turned into sleeping in my clothes all night.

The video below is Maren sporting some of her favorite attire - the sparkly sunglasses, the sparkly Giraffe shirt, and her hospital bracelet that she sometimes insists on wearing for a week at a time. She did not want to go to bed on "her birthday." You can see in the video how the steroids make her little tummy stick out. (I don't normally condone midriff shirts on 2-year olds =))

Clinic Chronicles, Delayed Intensification, Day 15,56

2009-09-16T05:34:00.000-07:00

Maren is 1/4 of the way through with DI!!!

Clinic went fine yesterday. Maren got her treatments with no problem and we were actually out of there in less than 2 hours. Her ANC was 800, and her platelets were 156,000. Dr. Randy said this was on the low end of normal for this stage. I'm guessing her ANC will go back up because she started her steroids again yesterday, so that ought to give her a little boost for the week.

Elijah B. turned 4 yesterday. We had a fun dinosaur-themed day, and I think he loved every minute of it. I felt bad having to leave him to go to clinic on his birthday, but luckily Grandma was here and the Birthday Bird (I'll explain later) came, so I don't think he even missed me. I'll post pictures later today.

Delayed Intensification , Day 13/56

2009-09-14T15:29:00.000-07:00

We're headed back to clinic tomorrow for Maren to get another dose of Doxorubicin and Vincristine. She'll also start the steroids again in the morning (she already did the first pulse Days 0-6). We are so thrilled that she hasn't had any trouble with glucose levels so far. We don't know what to expect with this second pulse. I'm not convinced last week's steroids are out of her system since she is still eating like a teenager, and she has redeveloped a few of her other induction habits like insisting her hands be double wiped after meals, sleeping with washcloths, and sometimes asking me to feed her instead of picking up her food herself. I have to wonder if she knows something is off inside her body, or if being only 2, she doesn't think much of it. Still, she is doing wonderfully all things considered. I am very thankful that she is happy, able to get around and play, and that we can all be together at home and not in the hospital. And . . . more good news . . . after tomorrow we don't have to go back to clinic for 2 weeks - yay! The time off is to allow her blood counts to recover in order to start the second half of DI with different drugs. Please pray that she is able to remain healthy and at home. Thank you so much.

Delayed Intensification, Day 12/56, No News is Good News

2009-09-13T16:01:00.000-07:00

I really don't have anything to report, and in this case that's a very good thing.

I hope you all had a great weekend too.

Day 10/56, Looking Good and Going Strong

2009-09-11T13:30:00.000-07:00

Delayed Intensification Day 9/56

2009-09-10T11:36:00.000-07:00

Day 9 is really close to being Day 10. I like the sound of that, but I guess I should save my excitement for reaching Day 10 for tomorrow. It just sounds like we're moving along. Maren is doing pretty good. Napping right now. She had some trouble sleeping last night after she "spilled her hiccups" if you get my drift. That was her term for it at 4am. She's so funny even when she's sick. She had a decent morning other than getting whacked in the head by the rock hard eyes on Elijah's Red-Eyed Tree Frog just before nap time. Her bruise on that ought to be a good way for us to figure out if she has a low-platelet count.

She's still hanging on to a thin layer of hair, but the back seems to be falling out at a faster pace than the sides. We might wait another week or so before cutting it ourselves and busting out some Fall hats. I watched a video on youtube about how to knit a basic child's hat, but my self-diagnosed adult-onset ADD prevented me from viewing the entire video, and so even if I understood all that lingo, I would only end up with 2/3 of a hat. That's what online shopping is for! (Jeremy and I disagree on whether self-diagnosing and online shopping are good isolation hobbies. If you have any other suggestions, I am open to them.)

3 hours later. Ok, after some thought I decided I should clarify that I really don't spend inordinate amounts of time self-diagnosing and shopping. I try to keep my house somewhat orderly (although my mom and mother-in-law may tell you otherwise), research leukemia, read, slowly but surely write overdue thank-you notes, watch Monk, and feed the kids. Um, I guess that doesn't sound a whole lot more exciting, so I am still open to suggestions. Sheesh, I just wanted to clear that up, because I had this horrible thought that someone reading this may have taken me seriosly.

Delayed Intensification, Day 8/56

2009-09-09T08:24:00.000-07:00

I can't believe we made it to Day 8 already! That may not sound very far in terms of the entire 56 days, but really I thought every day would seem like an eternity. Our days have been filled with most of the things other families do in the Fall minus outings with friends and family, plus a few more syringes of medicince, and we are doing great.

Maren's appointment went well yesterday. She started screaming for french fries as soon as we got there (thanks to the steroids), so the clinic staff did their best to get us out of there as quickly as possible. Maybe she should scream for fries every week =).

Her counts were good - ANC was 4700 (this about where your's or mine would be on a given day). This was by far the highest ANC she's had since the beginning. The day she went to the hospital it was 0. Her immune system had been eaten up by the leukemia itself, not the chemo. So she is doing well even though the numbers are "artificially inflated" by the steroids, I feel better knowing that she probably won't get sick from some random mold spore or get the swine flu just by looking at somebody.

She woke up just a tiny bit cranky and then ate 5 pieces of bread with butter, but overall seems to be doing, much, much better than she was the day after chemo last week. So far, Delayed Intensification is going 1,000x better than I had expected it to. Your prayers are truly appreciated.

Lovin' Labor Day

2009-09-07T09:19:00.000-07:00

Everything is still going very well here. I can see the steroids starting to take action - Maren's a little moody, she wants to be held a lot, and she had 4 chicken nuggets for breakfast. Compared to the steroid action during induction, this is a walk in the park. We go back to clinic tomorrow for more Doxorubicin and Vincristine. It shouldn't be a big deal - no LP which means she gets to drink milk and eat breakfast, and she'll be happy about that for sure. We are still enjoying the weekend - we hiked a trail at the community park yesterday, and I think we'll stick around the neighborhood today. I hope you're all having a great weekend too. I'll keep you updated on tomorrow's clinic progress. Love - E

Adventures in the Woodlands - Take that Day 4

2009-09-05T19:57:00.000-07:00

I wish every weekend were a three day weekend. We haven't been on a family outing for so long that I think we were all getting cabin fever. Between Maren's isolation needs and Jeremy's work schedule it's just not been possible. So today we packed up the kiddos and drove to a resort called Nemacolin Woodlands. It had paved trails that were perfect for the stroller, and easy enough for Elijah to walk, and most importantly, I don't think we were within 20 feet of anybody the whole time, except for the occasional person going past. Elijah and Maren absolutely loved it. They seemed so excited to be outside, and to have something to look at other than our neighborhood or the clinic. And seeing lions and buffaloes made their day. By the time we got home, they were more than ready for bed. We'll probably all sleep well tonight.

Starting out.

Scoping out the buffalo.

This is the best we could do for a family picure.

Here's Elijah showing off the new "collections" he started today - an acorn collection, a leaf collection, and a flower collection.

Take that Day 4.

Delayed Intensification, Day 3/56

2009-09-04T19:28:00.000-07:00

We made it through Day 3 with no bumps. Maren got her shot of chemo, and although she was pretty mad at the nurses while it was happening, she recovered very quickly. No allergic reaction, no complaints. It should be her last chemo in shot form for the remainder of her treatment. I just found out that Jeremy is off for Labor Day, so we're all looking forward to some down time. We're hoping for a very uneventful weekend.

Answered Prayers

2009-09-03T18:47:00.000-07:00

I know that answers to prayer don't always come in the way we expect or hope, and blessings sometime come in the form of hardship or grow out of hardship, but today God answered our prayers for Maren's well-being with a resounding yes. Y'all must have been praying, because today was awesome. Thank you. Maren was her happy, funny self, and didn't complain of any ailments - not even once. The difference between today and yesterday was like night and day. What a blessing. Elijah and Maren pretty much spent the morning having "adventures" around the house, took a nap, and we even fit in a drive-thru Starbucks run. I wish I had taken picures, but I guess I was too busy enjoying the goodness. Instead I'll treat you to this shot of Miss Maren with her . . .um . . neato(?) Barbie head from the treasure chest.

Tomorrow we go to clinic at 2pm for a chemo shot. She has had this drug before, and it sometimes can cause an allergic reaction similar to a bee sting (closing of airways), and like a bee-sting it usually doesn't happen the first time, but is more likely to occur with subsequent exposure. We do not anticipate any problems, but please keep her in your prayers.

Delayed Intensification, Day 1/56

2009-09-02T16:44:00.000-07:00

So we're towards the end of Day 1 right now. I feel like we should at least be at Day 2, but all these medical folks are so technical that we actually start at Day 0(yesterday). Maren's ANC was 1025, just high enough to start the new phase. The LP went perfectly fine, and we're grateful for that. She picked a lovely hair-styling Barbie head from the treasure chest. She seemed to be okay, but slightly tired and loopy the rest of the day. I was feeling pretty good about things until she threw up at 5am. She spent the rest of the day wimpering, yelling that she wants to cry - as in "No, I wanna cry!", telling me her legs and tummy hurt, getting the most mysterious rash I have ever seen and then having it disappear in 20 minutes (thank the Lord), and having moments of laughter and fun in between. She's on 5 meds right now in addition to the 3 chemo drugs she got yesterday, so it's understandable that she just feels junky. She is in bed right now, and like all parents, I'm just hoping she sleeps through the night. I will try post some pictures tomorrow, I left the camera in the van yesterday, and I just don't have the energy to go out and get it right now. I think I'll try to update every day if I can during this phase. Thanks again for praying. God is good.

Hope and Prayer, we need lots

2009-08-31T16:41:00.000-07:00

Delayed Intensifcation here we come. Maren is so excited to see Dr. Randy that she asked if we could go tonight. I told her Dr. Randy was getting ready for bed (unlikely as the poor man is usually there until 8pm and takes overnight call every 3 nights or so), but she thought that was reasonable and agreed to go in the morning. I hope that she isn't disappointed. Please pray that she is able to keep up her beautiful, happy spirit, that she doesn't have any complications, and doesn't have to be hospitalized for any part of the next 56 days.

I took these pics of the kids on the couch thinking that I can't wait until they're sitting there at Christmastime, healthier and happier. I also thought it would be nice to document Maren's hair, because she is expected to lose it - eyebrows and all - during this phase. I can't say I'm really bothered by the idea of her cute little bald head, and for now she seems a little excited about getting an "orrcut" just like Daddy's.

Below is our stocked pantry. Does this bring up any memories of Y2K? We are pretty much going to be isolated for the next 2 months. I think I'll make my last trip to the grocery store tomorrow (I forgot to buy ketchup - and that's popular stuff in our house). I went to Coscto and Target over the weekend and I've never felt more OCD in my life. I'm sure I looked like Monk constantly wiping the cart and my hands, but the stores were packed. Maren starts her steroids tomorrow night, and her appetite is expected to skyrocket. I just hope that I got the right things or I'll have some 'splainin' to do to a cranky 2 year old! Here's hoping - for a lot!

Let the Good Times Roll

2009-08-21T12:56:00.000-07:00

A Confession

2009-08-21T12:48:00.000-07:00

Yes, that's right peeps - 1/2 dozen donuts all eaten up. I am responsible for eating 5 of the 6 in a period of 6 hours. A drive-thru Dunkin' Donuts is just beyond my ability to control temptation. Some people tend to lose weight when life gets stressful. I'm thinking I'm not going to be one of those people.

Clinic Chronicles: Interim Maintenance, Day 40, Lollipops and Chemo

2009-08-18T14:17:00.000-07:00

Clinic got off to a good start with Maren getting a lollipop from Nurse Crystal. Lollipops are a very special treat for her since she has trouble swallowing and we never give her stuff like this. So she lives it up while I watch her very closely and try to remember there are lots of medical professionals at the clinic =).

Her ANC was 1400 yesterday so that was pretty awesome. She was able to get her last dose of Interim Maintenance chemo, and we can know that she'll probably be okay in terms of infection patrol for the next day or 2 before the new chemo really kicks in.

The picture below is Maren getting her Methotrexate through this portable little IV machine. Pretty fancy stuff. The visit took a little over 3 hours due to us being overlooked initially, but I really can't complain when all I have to do is put her in the van, drive 30 minutes, and sit in a nice room for 3 hours to get a lifesaving treatment for my child (Of course, it's Maren that has endure all the yucky feelings of chemo, not me. I wish she didn't need all of this chemo nonsense, but I am so grateful that it's available to her.).

What's next? The dreaded 56-day Delayed Intensification is scheduled to begin September 1st. We'll be back to clinic weekly, if not more often. If her ANC and platelets are high enough she'll start out with a lumbar puncture, steroids, and a few other chemo meds. Some are things she has not had before and they can have pretty serious side effects (i.e., heart failure), and taken all together they pretty much crash her immune system. This means we'll be on tight restrictions for going out or having visitors, because something as simple as a cold or the flu could mean hospitalization and seriously put her life in danger. I'm not one for stirring up fear, but I am nervous about this next phase. Please pray that she will get through it smoothly, with no infections, no hospitalizations, bad side-effects, or steroid-induced diabetes. Thank you.

Miss M gets a lollipop

2009-08-18T14:03:00.000-07:00

Just a cute video.

Elijah B.

2009-08-18T14:02:00.000-07:00

For Elijah, clinic = grandma

She even brings things like sand trays to help him learn how to make letters.

Yes, he's got it made in the shade on clinic days.

Week in Review

2009-08-17T04:52:00.000-07:00

I need to wake up Maren in about 1 minute to get ready for clinic, but I thought I would take some time to post a few pics of our week before I get back to chronicling clinic, lest you think that's all we do =).

We celebrate birthdays - these two are birthday specialists.

Watch Granddad make hay.

Roam the farm.

2009-08-17T04:48:00.000-07:00

Make "cowboy faces" on the old rocking horse at the pond house.

Clean up in Grandma's tub.

Get groceries delivered!! Woo Hoo! Yes - that is milk under that produce. Nothing beats milk delivery in my world.

2009-08-17T04:43:00.000-07:00

Camp in the front yard.

Make lots of messes, and wear last year's Halloween costumes.

I hope you've all had a wonderful week too. Thank you again for thinking of us, and for praying for Maren. I can't begin to tell you how much it means to us. We'll keep you updated on clinic.

Clinic Chronicles: Interim Maintenace, Day 30

2009-08-09T20:36:00.000-07:00

Just like last week Maren was up early, and excited to go to clinic. She had to skip breakfast and milk in order to be sedated for lumbar puncture, but she didn't seem to mind. As we pulled into the hospital parking garage she exclaimed, "My hospital! My hospital! I love my hospital!" This was just before I was pulled over by the Pixburg Police for running a stop sign inside the parking garage (at about 8 miles an hour, by the way), but that's another story, for another time. Lets just say, I'm glad I finally gave up my North Carolina license from 5 years ago and got a PA license a couple of weeks ago. That could have been one ugly traffic stop otherwise.

2009-08-09T20:35:00.000-07:00

The day got even more exciting when Maren found Daddy in the waiting room. I didn't tell her he was coming, so that was a sweet surprise.

Blood pressure in the vitals room. I think this is her least favorite part of the day. She hates the blood pressure cuff, and it always takes a few tries to get it to work because she won't sit still.

Nurse Crystal often has little goodies to give out, and today Maren got a beach ball.

We are thankful that she is very active these days.
It's certainly a welcome change from a couple of months ago.

2009-08-09T20:34:00.000-07:00

Maren's baby doll is very active as well.

Nurse Jackie accesses Maren's port.

2009-08-09T20:32:00.000-07:00

Her lab counts were just high enough to get the works this week.

This is Dr. Randy administering Maren's "silly medicine" (fentanyl and versed).

This Maren starting to look "silly."

The LP is just about done at this point. Methotrexate was injected into her spinal fluid. She then had Vincristine and Methotrexate pushed through her port.

Recovering with Dora,

2009-08-09T20:29:00.000-07:00

milk,
cookies,

and Daddy.

And more cookies.

2009-08-09T20:28:00.000-07:00

Here I am getting a little restless and checking the clock. Maren always wants to get moving as soon as she can, but she needs to be hooked up to the blood pressure cuff and the oxygen measure, and keep her port accessed until they determine she is well enough to leave.

Maren helps nurse Jackie flush her port with saline before it de-accessed.

Finally - she is free of tubes.

Choosing a toy from the treasure chest. Needless to say she loves this part.

Little Einstein "action figures." A pretty good find.

Speedy Recovery

2009-08-09T19:51:00.000-07:00

This is an awesome video showing just how quickly Maren is able to recover; it was taken only an hour or two after we got home.

Clinic Chronicles: Interim Maintenance, Day 20

2009-07-27T13:00:00.000-07:00

Intro to Clinic:

Assembling the Clinic Bag.

We're usually in and out of clinic in about 2-2.5 hours, but sometimes things can take a little longer, and if she happens to need platelets or red blood cells it could take all day. I restock the clinic bag before every appointment trying to change up the goodies so she won't get bored. Sometimes when I am feeling like a goody-two-shoes I restock it a few days early, but most days I do it the morning of the appointment in a bit of a rush.

She goes through books like crazy, many times because she wants to go on to the next one before we're finished with the current one. Luckily they stock some in the patient rooms, and have a cart of books that is donated by customers of Half Price Books.

Snacks. When the visits get to be 3 - 4 long hours we get a little hungry. The clinic does provide snacks if you ask, and they always give her something on days when she has a procedure (i.e. lumbar puncture or marrow biopsy). There is no eating or drinking in the waiting room because there are always some children who are NPO (no eating or drinking) before their procedures. I am very thankful for this rule on days when she is NPO.

The portable DVD player - this has paid for itself many times over in terms of sheer enjoyment while she was inpatient and especially during ER visits. I take it to clinic now just in case we have an especially long wait in the patient rooms. On procedure days there is a DVD player in the treatment room and a personal DVD player on every chair/bed in the recovery room.

We take these everywhere. And we wipe down everything.

2009-07-27T12:58:00.000-07:00

LMX cream.

I apply this numbing cream to Maren's port site in the van when we get to the hospital.

The bib for the ride home - just in case she isn't feeling well. She has only thrown up twice over the past 3 months, so we may not need this too much and that is a very good thing!

The to-go drinks. We would probably both be pretty cranky without them.

About 80 pounds later - the assembled clinic bag. Yay.

Waking up Miss Maren

2009-07-27T12:35:00.001-07:00

She's practically jumping out of bed to go see Dr. Randy and Whitney (the PA). Or maybe it's because we don't get out too much and she's just happy to go somewhere. =).

Note: You may want to pause the music on the playlist (above and to the right) to watch the video.

2009-07-27T12:30:00.000-07:00

Strapped in and ready to go.

The brief nature trail before we hit an industrial road (I'll spare you those pics).

My kids call this the Allegheny Ocean. Funny and sad.

Jeremy says it's not even the Allegheny. Even funnier.

The new hospital. Ain't she a beauty?

2009-07-27T12:28:00.000-07:00

Only 35 minutes after we pull out of the driveway, we get a buzzer in the waiting room at 5 minutes to 9.

Vitals Room with nurse Crystal. She was 33 lbs. and 36 inches yesterday.

2009-07-27T12:27:00.000-07:00

In the patient room.

Nice view.

Maren's port is accesed by the nurse and labs are drawn. Her blood is checked every week to make sure her immune system is strong enough for the chemo, and to check for Leukemia blasts in the blood. Platelet levels and red blood cells are also counted in case they need to be replenished through a transfusion.

We wait in the playroom for Dr. Randy to come by with the lab results and do an exam.

2009-07-27T12:23:00.000-07:00

Maren gets vincrsitine through her port.

Her labs revealed that her ANC (absolute neutrophil count) is only 600. Under 1,000 means there is a high risk of infection, and under 500 will mean an automatic inpatient stay if she gets a fever. She needs to have an ANC of 1000 to get her methotrexate during this cycle, so that was a no go. Not to worry, that's pretty standard in this cycle, and it's not something she has to make-up later.

We make her appointment for a lumbar puncture next week, and we punch out of the parking garage at 10:57. Not bad.

Our post-clinic tradition. Always to-go unless she happens to have a particularly high ANC.

One clinic visit closer to the finish line.

Dream Night at the Zoo

2009-07-25T05:59:00.000-07:00

We attended our first official event with the Leukemia and Lymphoma Society last night - Dream Night at the Zoo. Elijah and Maren were talking about it constantly for at least four hours before it started, and they were not disappointed. For the most part the animals were out and active, and zoo gave out free glow sticks, cotton candy, and little talking animal heads. What could be better? Maren had to wear her mask most of the time, and even though I think it makes it more difficult to breathe, she didn't let it slow her down.

2009-07-25T05:55:00.000-07:00

By the way, Maren's band-aids are just a fashion statement here. She got so used to having her fingers all wrapped in band-aids when she had steroid-induced diabetes during Induction that she thinks they're like stickers. Fortunately, she has a huge supply from all the caring people that sent them to her. We are hoping that she wont need them for the next of phase of chemo in September when she gets the steroids again, but we'll just have to wait and see.

Girl on the move

2009-07-23T14:48:00.000-07:00

Running

for the first time in 2.5 months.

Woo Hoo! Hooray for Interim Maintenance. Maren is just about 1/2 way through her third phase of chemo, and we are so happy to say that she is doing great. Overall she has more good days than bad days, and she definitely has more energy than I do. We just hope this continues for the next month. Her doses of chemo increase each time she goes, and her immunities are expected to drop drastically by the third(her third will be Monday morning) or fourth dose of vincristine and methotrexate, so please pray that she will be able to fight off any infections that may come her way. We are so thankful for every day that she is not in the hospital.

Life is good.

2009-07-23T14:46:00.000-07:00

She is truly the funniest baby I have ever known.

And yes . . . .

We still call her Baby.

She thinks it's her name.

In the meantime

2009-07-23T14:44:00.000-07:00

We have been trying to keep ourselves busy by doing "normal" activities.

I know the picture is misleading, but it was I who turned 30 - not Miss Maren (although she does like to think she's always the birthday girl). This is not quite how I expected life to look at 30, but I have certainly learned to appreciate the unexpected.

2009-07-23T14:42:00.000-07:00

J-Dog turning 31.

Eating sweets. Elijah's specialty.

Pixburg Zoo n'at

2009-07-23T14:38:00.000-07:00

So we are trying to do "normal" family activities, but it's hard to look normal when you've got to be ultra-protected from the sun, so here's Maren looking . . . ahem . . .

fashionable?

2009-07-23T14:33:00.000-07:00

Choosing her own outfits.

Practicing showing her teeth for Dr. Randy (she's pretty good at it now).

Our only water access for the next 3 years. Maren is not supposed to frequent lakes, rivers, streams, oceans, beaches, etc. until her port is removed. Let me just tell you, that there is going to be one big beach party when she is done with all of this. Mark your calendars for June of 2012.

Eating ketchup like there's no tomorrow, and riding bikes 'til the sun goes down.

Savoring the good times.

Lil' Maren Update

2009-07-07T09:56:00.001-07:00

Today Maren goes into the hospital for more chemo treatments. They are going to give her VinCristin (sp?) again, which is a very toxic med. This is the med that gave her such a horrible diaper rash/wound last time because it actually burns your skin. Please pray for her as she has to restart this treatment today. They are also starting her on another chemo med today through IVs. She will be all hooked up and pumped up again. These treatments will last once a week for 4-8 weeks. Please also pray for her as these meds do cause nausea as well. So far, she has only thrown up twice, which is really good for a little one receiving such harsh meds. The Wingard family definitely needs our prayers as they are entering another intense go with chemo. Thanks for all your prayers and support!

We are thankful.

2009-06-29T19:08:00.000-07:00

1. That God is good. All the time.

2. That Maren is in remission.

3. For all of you who have been thinking of us, praying for our family, checking the blog, and most importantly, praying for Maren's recovery. The love and support we have been shown has been overwhelming. I can't begin to express the excitement and joy that a package or a card brings to Elijah and Maren. Each package and card has been unique, touching, and clearly sent with love. I know they don't quite grasp what is going on, but they understand very well that there are so many people out there who love and care for them.

4. To live near family, and to have family that is willing and able to travel to help us out. We have been blessed beyond measure that our families have stepped in to make every step of this experience easier. When Maren was first diagnosed my parents were here to take care of Elijah, and when they had to leave my in-laws took him to their farm for many days of 3-year old bliss - cookies, tractors, animals, and a warm bed in a familiar setting. My mom, Sharon, and Jeremy's mom, Karen, have both been indispensable in helping us get through the day by playing with the kids, doing laundry, cleaning, and providing emotional support. My dad, George, will be out here in 2 days to help us close off our office so that we will have a guest room to house our wonderful visitors. Jeremy's dad, Larry, has stepped in to mow the lawn, plant flowers and even make a garden. Uncle Ron and Justine are coming to help out this weekend. Aunt Laura took Elijah exploring in the woods and spent lots of quality time with him, even while she wasn't feeling well herself. We have also had offers of help family members all the way across the country. Wow. And of course, a shout out to Uncle Jerry and cousin Phil for driving almost an hour to mow to do house projects. And to Chad Apaliski who just showed up with his mower and said he was going to mow the lawn. It makes me cry to even think about all the love we've been shown (and if you know me well, you would know that is a pretty dang hard thing to do).

5. For the wonderful women at my church and my MOPS group. We have had delicious meals provided to us so that we were able to sit and eat as a family for the past two months. Maren's hospital stays and medication schedule have made routine all but non-existent in our home, so knowing that we can sit down together at mealtime, no matter how crazy the day has been, is truly a lifesaver. What a sweet way to show the love of Christ.

6. For my sweet cousin Alison, and my lovely friend Molly for making this blog and keeping everyone updated. With their own busy schedules and young families, I don't think this has been easy. I know that Maren's diagnosis hit them both particularly hard as they have little ones around the same age.

7. For all of the childhood cancer patients that have gone before Maren, opted to be included in studies, and went through even harsher types of chemo-past.

8. That since the first stage of chemo (Induction), Maren has been surprisingly well. We can tell that she doesn't feel good sometimes, she still lacks some balance and strength when walking, and she did throw up for the first time on Saturday but let me just tell you - girlfriend is a trooper!. She tries so hard to keep up her happy spirits, and she is such an independent little girl. Her vocabulary is tremendous (of course I'm not biased). After two years of saying almost nothing at all she started talking in full sentences within weeks of her 2nd birthday. I am so thankful that she can communicate - I can't even imagine how difficult it would be if she couldn't tell us how she feels or what she wants. She is constantly "telling off" her doctors and nurses in not so many words - and often just with body language, but they say it's good that she is a strong-willed fighter.

9. That Maren's primary oncologist and oncology fellow are the best we could hope for. Her primary oncologist is Dr. Ritchey - Chief of the Hematology/Oncology Division at Children's, and the Principal Investigator for the National Children's Oncology Group. Her fellow is Dr. Randy (he goes by his first name) and he is just the nicest doc you could imagine. Our nurse told us she wished all the kids could have Dr. Randy.

10. That Jeremy is a resident at UPMC. That alone has made the entire experience so much more comfortable than it could have been.

11. That Maren has a beautiful new Children's hospital about 12 miles away. The place is gorgeous, and while going to the hospital is never really fun, the new surroundings make it so much more bearable for her.

12. That Maren should be finished with all of her treatment by the time she starts kindergarten.

12. For all of the research docs over the years that have developed a treatment plan for ALL that has a very good prognosis.

13. That Maren is so stinkin' cute.

14. Elijah too.

15. That we have a new appreciation for our children, for life, and for enduring hardships.

16. That God is good. All the time.

Prayer Requests for this week:
This is Maren's last week of the Consolidation phase of her treatment. It is has gone very well. We are happy to have one more phase down. Please keep her in your prayers as she undergoes another spinal tap tomorrow to have chemo put into her central nervous system. Please pray that her ANC (immunities) do not drop dangerously low -we would rather not go back to the hospital with another infection. If all goes well and her blood counts are high enough she will start Interim Maintenance the following week. While it's nice (and completely normal) to get a break from the chemo to wait for blood counts to rise, we would love to push through if her body is able. Please pray that she will have peace. Please pray that she feels well and is able to play and walk. And for the well-being of the whole family- please pray that she sleeps well. Thank you!

Prayer Request for Tuesday

2009-06-15T22:52:00.001-07:00

Well, Maren's week went well. Thankfully, she didn't end up in the hospital and has been home with the whole family! She did get a bit feverish from the new medicines she is on, but nothing too serious. She has been enjoying her Strawberry Shortcake dvds and playing with her dolls!

Maren is on a new medicine that Emily and Jeremy have to give her every night for the next three years. She cannot eat or drink two hours before she gets it and an hour after she has it. This has been really hard for all of them. A two year old just doesn't understand not even being able to have water. It's especially hard after she has the medicine and wants something to drink to wash away the yucky taste. So right now, they are dealing with that transition.

They have been able to administer some of the chemo in her port since the infection has healed up and that has saved a lot of grief!

Tuesday morning, Maren is going in for a lumbar puncture and more chemo. Please pray for her as she endures another painful treatment.

Thanks so much for all of your love and continued prayers; they are really needed!

Maren's Cute Room & Special Thanks

2009-06-10T11:26:00.000-07:00

Here is Maren's newly arranged room...

She and her whole family are really enjoying all of the love gifts and special thoughts. Thanks to everyone who has sent them thoughts of love, prayers, and gifts of encouragement! The Wingards also want to send a special thank you to Women of the Cloth at Lambs Fellowship Lake Elsinore (CA) for sending the quilt (on her bed) specially made to show Maren she is being prayed for! Thanks for all the love and support! It is so appreciated and needed!!

Little Maren's Recent Status

2009-06-08T07:05:00.000-07:00

This update was just sent from my aunt Sharon, Maren's grandma, who is at Maren's house, helping and playing:

Maren is getting the Vincristine again tomorrow if her blood counts are high enough. They haven't been high enough to get chemo for the last two weeks, so she is now two weeks behind schedule. Originally, the doctors planned for six months of the intensive treatment, but now that she is behind schedule, it is looking like it will be eight months - into November and maybe December. She is no longer needing the insulin because she has been taken off the Decadron (steroid). This is great. No more finger pokes or injections. She may develop the diabetes again, though, when they give her the Dacadron in greater quantities in the September/October timeframe. The wounds on her backside seem to be healing up finally. Although, the Vincristine to be given tomorrow may start that up again. It is highly toxic and as it is excreted it burns the skin. I have to wear gloves to change all of her linens so it does not get on my skin! Em has to wear gloves to change her diapers. She should be given this drug in her Port, but because she had the infection last week, it must be given by IV in her hand tomorrow. If it gets on your skin during administration, it can cause 3rd degree burns. The doctors will have to be very careful when they administer it.

She has been learning to walk all over again. But,one of the side effects of the Vincristine is foot drop. so we hope and pray that it does not effect her that way. She's been doing really well the last several days. She can't stand up on her own, though, from a sitting position. Her legs are weak and she is so much more heavy (having gained weight from the steroids). She is beginning to eat less, too (caused by the Decadron). Tomorrow, she will also begin to get a new chemotherapeutic drug called MP6. It will ge given orally here at home every night. Emily rearranged her room and she is sleeping in her big girl bed. I will try to send a picture.

To all the faithful readers, praying and supporting The Wingard Family, Sharon writes:

We would like to thank God for her increased stamina the last few days, the healing of the wounds on her backside, and the return to normal glucose levels. She has even been playing and smiling! Prayer requests for tomorrow include high blood counts so she can get her chemo, no problems with the administration of the Vincristine, no side effects from it this week. Again, prayer for Emily and Jeremy and little Elijah.

Beautiful Girls

2009-06-06T20:06:00.000-07:00

Maren is just beautiful! Please continue to pray for this sweet, precious girl!

Her new cousin, Rose Winter Toly, is simply beautiful too! Congrats Noah, Becky, Ben, & Joe...she is stunning!

Maren enjoying time at home again

2009-06-05T14:09:00.000-07:00

Maren has been home for a couple days. The doctors were able to get her glucose and blood counts under control. Tuesday, she is scheduled for her chemo treatments again. Her grandma Sharon is really enjoying her time there, playing and helping. They have been really busy lately, so I don't have much else to update with. But, she is being spoiled and treated like a princess:

Maren's family weekend & return to hospital

2009-05-31T21:24:00.000-07:00

The Wingard family had a fantastic time at home together! Emily's mom is out visiting and helping, and they all had a great time playing, laughing, and enjoying the sunshine! Emily really had fun pulling the kids around in the wagon. It felt so good to be home as a family after all their time in the hospital lately! Circumstances like these really make every moment at home as a family so meaningful and important. The simple times are a treasure!
Elijah loved the family time too! These two are such cuties!
Maren was even spoiled with a new bike just her size and color!!
Unfortunately, Maren was admitted to the hospital again tonight. She has a fever and her blood counts showed very little ANC(neutrophils) to fight infection; her platelets were also very low. Due to this she cannot get her needed chemo and it wasn't given to her last week either because she was so sick. It really isn't a good thing to wait long for chemo treatments. Maren also has some cellulitis near the port in her chest they surgically implanted to inject the chemo treaments. Cellulitis is an infection under the skin usually caused by staph.

After such a great weekend, it almost started to feel like Maren wasn't sick. Then, they were snapped back into reality today. Emily was sad to end the time at home and head back to the hospital. Sharon is home with Elijah now, while Emily and Jeremy are staying with Maren at the hospital.

Maren is starting to breathe hard a lot lately due to the weight she put on from the steroids and chemo; this is very hard on her little body. She is still not walking too much either.

Please-Please-Please Pray for Maren and her family as they struggle in their battle against leukemia!!!

Sweetness

2009-05-29T21:38:00.000-07:00

Maren is doing better this week. Her glucose levels are down and she is being tapered off the steroids for now. She has smiled a bit more and is taking some more steps!! She is home now and they are hoping to stay home until she returns for more chemo on Tuesday!

Emily and Jeremy are the best parents; they are a strong, unstoppable force!

Elijah is an amazing big brother too!

Enjoy your weekend!

A Few Tidbits

2009-05-28T10:27:00.000-07:00

So, I (Alison) honestly haven't heard much lately about what's going on with Maren as they are pretty busy these past few days.

I do know they did not do the special procedure of fine combing the bone marrow for hidden leukemia cells. The doctors spent time talking with Emily and Jeremy and they both feel good about not doing it. The extra chemo could be really hard on her body too.

I did hear this morning that Maren does have another fever. I'm sure if it lasts too long or gets too high, they will have to go back to the hospital. So, please pray for her!

Sharon, Emily's mom and my aunt, is flying out there today to stay for awhile to help out. Please pray for her to have safe travels!

Also...Noah, Emily's brother, and his wife Becky gave birth to a healthy baby girl yesterday afternoon. Once they broke Becky's water, baby made her appearance an hour later!! Her name has not been revealed yet and we are anxious to find it out! So, Maren now has a new baby girl cousin to add to the family! Congrats!!!

Emily is hoping to write a post here soon if things ever slow down for them! For now, please know how much they feel your love and prayers and are so so thankful!!

Thanks!!

Bone Marrow Biopsy

2009-05-26T07:42:00.000-07:00

Maren is at the hospital this morning for another bone marrow biopsy. This time, however, Emily and Jeremy are hoping they can get the doctors to do a special procedure during the biopsy that they usually only do during the very first biopsy. A special study has been paying for patient's bone marrow to be "fine combed" to look for hidden leukemia cells in the bone marrow. The find the hidden cells and do extra chemo and this procedure brings a patient's blast cells unbelievably low and decreases the chances greatly of leukemia returning. Maren was too sick during her first bone marrow biopsy to have this done and they usually won't do it anymore because the study doesn't pay for it after this. Emily and Jeremy are hoping and praying the doctors will do it if they pay for the procedure. Please pray for them as they speak with the docs and try to do what they feel is best for Maren. Thanks!!

Cute Pics

2009-05-26T07:40:00.000-07:00

Here are some cute pics of Maren and family when she got to go home recently:

Checked out...

2009-05-24T18:07:00.003-07:00

Maren headed home today!!! Yeah!!!

She goes back Tues. for another bone marrow biopsy to see how the cancer & chemo is doing.

Lil' update

2009-05-23T11:39:00.000-07:00

Good News...

Maren happily played with Play-Doh this morning; she hasn't wanted to play with anything all week.

Her Diaper Rash/Wound is starting to look better too. So, she might get to go home tomorrow!!

However, her glucose levels are still high and not yet under control.

Please Continue to pray! Thanks!

Miss Maren

2009-05-22T20:24:00.000-07:00

Here is a new picture of Maren today in the hospital. She isn't smiling much these days, so Emily was happy to catch a big grin. What a precious and cute smile too!

Her body is really taking a toll from everything. She is really sore and swollen from the steroids and other meds she is taking. According to my aunt, she hasn't actually walked on her own in about two weeks as she is really sore and swollen. The doctors also don't want any diapers on her now as her diaper rash/wound is extremely severe. Jeremy bought Maren her own dvd player to watch movies right in her bed right up close. It made her really happy as she really loves Strawberry Shortcake!

Some possible good news: The doctors think Maren's body may have made its own platelets as their percentage went up today on their own. This would be a great sign for her body, so please pray for her blood to start making more of the good stuff!

They are really busy in the hospital right now and barely have a chance to call anyone, but they really want to express their thanks and gratitude for everyone's prayers and love!

Please Continue to Pray...

2009-05-21T20:16:00.000-07:00

Little Miss Maren is still in the hospital and dealing with a multiple of painful and annoying results from the chemo. Her little body is having a hard time with everything. It seems like if it's not one thing, it's another! She is on morphine for pain, but even the morphine is having side effects. Maren is tired, sick, and in pain. Her tiny body needs God's powerful, healing touch!

Of course, we are all extremely grateful for her bone marrow biopsy results, but her little body is taking a beating from the chemo and blasting of her blood cells. She will have another biopsy on Tuesday to see where she stands again.

Emily is staying at the hospital with her and is very tired as well. Please pray for God to continue to give her strength and energy as she lovingly supports her little girl night and day.

Also, please pray for Elijah as he is home again without Maren and mommy. Pray for him to sense God's love and to be comforted away from them. Also, pray for Jeremy as he is still busy with working and traveling from Maren and Emily to Elijah.

All around, they really still need our prayers and love!

Thanks for all your continued support, thoughts, love and prayers as well as the gifts being sent to the Wingards. It is all appreciated beyond words!

Maren still in hospital

2009-05-20T09:50:00.000-07:00

Maren is still pretty sick in the hospital. She seems to be doing a little better though since they checked in.

The docs gave her morphine and codeine for her pain with the chemo and the diaper rash/wound area. She is on an iv to give her lots of fluids as well as antibiotics and anitfungals. She is also getting pumped with more blood and platelets.

Her glucose is still uncontrollably high and the docs are working on that. If they can figure out how to stabilize this, it will help her to feel better and heal her diaper wound faster.

She will probably be in the hospital for at least a couple more days. But, Emily is glad she is there to get pain meds as it helps with the chemo achiness.

Please keep them in your prayers!
Thanks so much for you love and support!

Maren needs your prayers!

2009-05-18T17:35:00.001-07:00

Unfortunately over the weekend, Maren's health has not been very good. She started having a fever a couple nights ago and today is in the ER. She is being admitted to the hospital for her fever, which is possibly a sign of infection. Her blood sugar is also out of control. She has low neutrophils and platelets.

Please, Please pray for Maren's health as her body has taken a serious beating from the chemo!

Thanks and we will keep you updated with any news!

Enjoying the sunshine

2009-05-16T10:53:00.000-07:00

Here's the cutie pie, Maren, enjoying her day as they celebrate her wonderful prognosis.

She is trying lots of new things to eat as she can't have certain foods with the diabetes she now has from chemo.
The sun is shining in Pennsylvania and the Wingards are enjoying time at home. The good news is a great encouragement as they battle through chemo for the next couple years.

Please continue to pray for Maren's horrible diaper rash and health so she doesn't have to return to the hospital!

Maren, we are so grateful for your body's positive response to chemo! We are all praying for you and your family as you take on this battle!

An Answer!!

2009-05-15T11:59:00.000-07:00

The News is in...

Maren has 0% leukemic blast cells! She is now considered in remission and is seen as an early responder to chemo!!!!!

PRAISE GOD!!!!

THANK YOU SO MUCH FOR PRAYING!!!!

Everyone is so so thankful for this news! The Wingards plan to celebrate tonight as is everyone else right now! Maren may have diabetes right now, but that girl needs a cupcake!!!!

We love you Wingard Family and are praising God with you!!!!

What now: Maren still has to continue chemo for about the next three years as the cancer cells do try to come back. This news shows us that the chemo is doing its job and Maren's body is responding properly. She will also have another biopsy in two weeks to see where her body is at again. Early responders, which Maren has been labeled now, have a better prognosis and future outcome than late responders. The continued chemo for the next couple years is to prevent the cancer from returning! Being an early responder also means that Maren has a smaller chance of relapse in the future! This is the best possible news to get at this stage in the game!

She is out of the woods, but still needs our prayers and encouragement as chemo is a hard thing to deal with, especially for such a little one! Thanks to everyone!!

Still Waiting

2009-05-14T20:11:00.000-07:00

Well, there is still no news from the doctors on the biopsy yet. They are hoping to hear tomorrow and we are all anxious to know the results.

Maren is still suffering from a really, really BAD diaper rash! Emily has to use sterile water and sterile gauze to clean the diaper area and must change it every two hours. It's pretty tiring and rough on all of them. Plus, bad diaper rashes are painful and so annoying for little ones. Please pray for Maren's little booty to heal and for them all to get some amazing rest!

Thanks for all the love, prayers, and concern!

Waiting

2009-05-13T07:17:00.000-07:00

Yesterday's hospital visit was short for Maren; they were able to return home the same day!

At the hospital, the bone marrow biopsy went well and they will get the results in another day or two to see where her blast cell levels are at. Her ANC (fights infection) is critically low however. She was also given more Chemo-Vincristine. Unfortunately, Maren has a very raw and broken skin diaper rash that does not help the situation. The doctors are worried about infection, so they have to continually change Maren's diaper to keep her from getting infected, even throughout the night. They also have to wake her up a lot to give her insulin shots. So, they really aren't sleeping well and aren't getting any rest. Maren is also hungrier from the medicines and can only eat certain things due to the diabetes. She gets frustrated when she can't have what she wants.

Please pray for Maren's continued health so she doesn't have to return as an inpatient to the hospital. Pray for them to get rest somehow and for Maren's diaper rash to heal! Also, please pray for the Wingards as they await the results of her bone marrow biopsy!

Thanks so much for loving and praying for the Wingards!!

Weekend at Home

2009-05-11T21:28:00.000-07:00

The Wingards enjoyed some much needed family time at home!

Maren, of course, was happy to be home and not in the hospital anymore!!
Elijah loved having his family at home and not away anymore!
They even got a new red wagon to play in!!
Not much cuter than two cutie pies riding in the Red Radio Flyer!
Good to see those smiles and some sunshine!
Emily & Jeremy, your family is not alone! You are all covered in our prayers and loved so much!

Update: Maren returns to the hospital Tues. morning for more tests and evaluations. The Wingard Family would really appreciate your prayers for her blast cells to be under 5% as this will lay out a predicted path for her recovery. Please pray for them tomorrow!!!

Happy Mother's Day...

2009-05-10T20:09:00.000-07:00

To one strong, incredible, beautiful mommy!

Emily,

You are an amazing mother! Elijah and Maren are incredibly lucky to call you mom! You are so strong and courageous!
Hope your day was wonderful and full of love!

Happy Mother's Day!!

Little Blurb

2009-05-09T07:24:00.001-07:00

So, Maren is at home with her family, resting and recovering from an insane week at the hospital.

Emily, along with the rest of the family, was very touched by everyone's thoughts and prayers. It means so much to them!

For now, Maren does not have to go back to the hospital until Tuesday for further tests and chemo. They will do another biopsy as well to test her blast cells. She will be able to remain outpatient as long as she doesn't get sick even a little bit. So, let's pray for Maren to stay as healthy as possible so they can all stay home together!