Wednesday, September 30, 2009

update

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

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.

Tuesday, September 29, 2009

Delayed Intensification, Day 28/56, Time warp

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.

Sunday, September 27, 2009

Quick update

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.

Saturday, September 26, 2009

Home sweet home . . .

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.Posted by Picasa

Tuesday, September 22, 2009

Delayed Intensification, Day 21/56

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.

Monday, September 21, 2009

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

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? Posted by Picasa

Sunday, September 20, 2009

Swings and Haircuts

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. Posted by Picasa

Friday, September 18, 2009

Delayed Intensification Day 17/56

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

Thursday, September 17, 2009

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

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 =))
Posted by Picasa

Wednesday, September 16, 2009

Clinic Chronicles, Delayed Intensification, Day 15,56

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.

Monday, September 14, 2009

Delayed Intensification , Day 13/56

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.

Sunday, September 13, 2009

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

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.Posted by Picasa

Thursday, September 10, 2009

Delayed Intensification Day 9/56

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.

Wednesday, September 9, 2009

Delayed Intensification, Day 8/56

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.

Monday, September 7, 2009

Lovin' Labor Day

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

Saturday, September 5, 2009

Adventures in the Woodlands - Take that Day 4

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. Posted by Picasa

Friday, September 4, 2009

Delayed Intensification, Day 3/56

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.

Thursday, September 3, 2009

Answered Prayers

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.
Posted by Picasa

Wednesday, September 2, 2009

Delayed Intensification, Day 1/56

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.

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