Happy Halloween!

Love, Turtle Boy and Miss Fairy Princess

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.

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.

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 =).

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.

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.

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.

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.

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 =).

Progress and hope

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:

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

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

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

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

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.