Monday, May 31, 2010

Next Up: Kindergarten

..and yes, I am completely freaking out. I actually began this freaking out process way back in 2005 when I birthed my firstborn. I continued to freak out when we moved to a new house when Linley was 2 and a half. When she began Pre-K and was gone a whole, whopping 4 mornings a week I attempted to enjoy my time with only Piper. That worked a little bit until Piper got her diagnosis and I pretty much had to pass the parenting baton on to my mother, husband and an assortment of other fantastic Godly women who cared for Linley when I was not able to be with her. I did not have time to freak out so I trusted instead, that not only was she being cared for by great teachers but also by a great God.
And now Linley is done. She had as normal of a year as possible and I am amazed at how much she learned. I tried to be involved to the best of my ability and am blessed to think that she only noticed when I was able to join her. The end of the year party and subsequent evening show were emotional times for me. I am not much for crying but I may or may not have gotten a little misty- eyed when she was singing and later when she was holding her bouquet of Graduation flowers. I am so proud of you Linley Coe and I am confident that you will excel in Kindergarten and beyond. And I will attempt to stop freaking out about letting you go.

Friday, May 28, 2010

Bring on the HD Arac-C

I found out the other day that I don't have to write a whole novel every time I post a post. Whats that you say??? Now, just because I don't have to write and ramble (or as we remind my mother, "you're doing the whole rabbit trails thing again") doesn't mean that I will begin typing short and to the point updates. No, because I have one daughter who does not chat yet, another who tends to question and argue a lot lately and a hubby who is usually owned either by the local soccer complex and/or UGA. I have a lot to write and ramble about. I NEED to write and ramble so that someday I will look back and be impressed that I still had half a brain and the ability to converse with humans.

That being said I am updating you that Piper and I will be heading to to CHOA tomorrow morning for 48 hrs of High Dose ARA-C. If you remember correctly, the last time she had this dosage and type of chemo she had also broken her elbow and had surgery to replace her CVL with a Port. It was a rocky trip and I am fervently praying that this one goes much more smoothly. And while you and I are praying, please continue to pray that this ugly chemo keeps doing its job while keeping Pipers little body from the side effects that are possible. Both now and in the future. We should be home on Sunday and I am hoping that she will NOT get the fever when her counts bottom out 7-10 days later. She didn't last time and I really, really, really, hope she wont this time either. I will post again tomorrow and let everyone know how she is doing. And I will attempt to stay away from "rabbit trails"...but you have to know that's a tricky one for me.

Thursday, May 27, 2010

Soccer: Accomplished

This is going to have to be a quick post because yes, it is 1:05 am and I have to be up with 2 girls and out the door by 8 tomorrow. Once again I praise God that I really don't need much sleep to function.
I just wanted to share these pictures of Linley and Chads last soccer game on Saturday. Daddy is a big soccer lover and was determined to have Linley share this with him. While I am not certain she is going to be his soccer compadre, I am certain that she will always remember having a "Coach Daddy". Both did a great job and I am very proud of them. Now what sport do you think Linley will want to try out next??? And yes, both girls enjoyed the cupcakes very much. :)

Tuesday, May 25, 2010

Daytona Beach 2010

Before I tell you what an amazing time we had at the beach last week, I am going to confess that I am feeling very blessed. I am well aware that many of you who read my blog and/or chat with me may see the struggles that I have going on. And there are a few of them. But I am very settled into this Land of Denial and see no point in mentally going anywhere else. I am content with how my days are and I am hopeful that the covering of protection that God has placed on my little family will continue.
Back to the vacation. It was wonderful. It was relaxing. It was exactly what we needed. A HUGE thank-you to my Mother in Law for arranging all those tedious details and welcoming us along. I cannot tell you how much this meant to us.

Both girls were wonderful. Just plain wonderful. The drive was close to 8 hours and I am not lying when I say the girls laughed, played and slept for 7 and a half of those hours...both ways. And when they became fussy I brought out the secret weapon that Chad cringed at. A harmonica. Seriously, I grabbed it at the Cracker Barrel and tossed it to Linley when Piper began to make her presence known and both girls LOVED it. It was definitely worth the $4. Even Chad agrees. At least he does now.

Linley was awesome in the water. I have been telling her that the "armies" (arm floats) were not available for her when she turned 5 and she has been quietly but constantly arguing with me about that injustice. And yet, once Chad and I got her in the water, she took off. Seriously, just began swimming, eyes opened and underwater. I was so very impressed but not surprised. She is a very impressive kid after all. By the end of our 5 day stay she was going the pool length and jumping off the sides. Piper on the other hand was not quite the fish her sister was. She liked being in her float for oh, 62 seconds. And then she wanted to be walking around which she is just not that good at so it was wet and she was loud but she definitely did like the splashing about and all those people who chatted with her.

My mother in law was an angel and kept the girls each afternoon during Pipers nap. She and Linley would curl up with a movie and Chad and I and sometimes Laura (my sister in law) would head down to the pool or the lazy river and may or may not have sipped on some very lovely "grown-up" drinks. All in all it was a great trip and I am so blessed to have been able to go. What with Pipers fever, Linley needing to miss school, Chad and his hectic schedule, it was touch and go for a minute but we did it. Thank you God!

Saturday, May 15, 2010

Home 5/15

We are home. It was a blessedly brief stay and I am so glad for that. Pipers fever came down with the first dose of Tylenol (generic of course) and stayed away. Her cultures remained negative for infection and while we have up to 72 hrs for them to grow anything, it is highly unlikely that will happen. Her ANC did not rise very much but the attending Dr felt like the rest of her bloodwork pointed towards her counts rising...and that is the goal. So we are still on for that, now desperately needed, beach vacation. Pipers doctors and nurses are aware of our upcoming trip and are very encouraging. We were advised, as usual when her ANC is so low, to stay away from big crowds and to keep Piper from ingesting beach water the first few days. Tomorrow we will have to go to the local hospital to have a CBC done to check as to when we are able to stop the Neupogen shots. As of right now we are giving them to her up to Monday night but if counts rise too slowly they will have us continue another few days.

Of course, I forgot the camera so I don't have any pictures of Piper very happily riding on a push toy around Aflac...she was so incredibly happy. As in every time we walk through those doors there is a sense of relief (oh goodie...these people know what they are doing) mixed with a crushing acknowledgement that cancer is here and it is ugly. I much prefer my land of is so much more enjoyable there. We did have a chance to see Brent ( another infant leukemia fighter) and his family. They are always an encouragement to see. Brent is the first infant to use the protocol that Piper is on. To see him thrive and look so wonderful gives me he is such a cute kid.

Hopefully our next post will be pictures of my sweet girls enjoying some Florida sunshine (with SPF 75 and sunhats on). Thank you so much for praying. I just don't have it in me while worrying in the midst of a fever but knowing that Piper is covered by you guys gives me peace.

Friday, May 14, 2010

No news is good news

And that about sums it up. We got to the ER last night around 11ish and waited until close to 3am to get a bed in Aflac. By that time Piper was wide awake and happy and it took a straight hour of me walking around to get her to drift off. Unfortunately, we did not bring her sound machine because of all the rushing out the door and it was a very restless night. The nurses are wonderful but they are still in and out a lot and Piper was definitely not used to all that. She finally happily woke for the day at 8am. I was not ready to move quite as quickly as she was but Chad and I bumbled along until all the parts worked a little more smoothly and the day carried on. She did have a blood transfusion and is looking wonderfully pink.

Her ANC is at 20. Yeah, wonder she got a fever. On the upside her cultures from late Thursday night are not growing anything so that is good. The Dr told us they will do more cultures early am on Saturday and we are fervently praying they begin to rise and the cultures continue to be negative. Once they see the counts trend upward we will be getting out of here. And I really, really want that to happen. Why you ask? Because my mother in law has used her timeshare to book a week at the beach and we are invited! THAT is where I would prefer to be on much as I do love these ladies here at Aflac.

Linley spent the day with her Mimi and Aunt Laura. Chad went home to spend the evening with her and to get them both to an 9am soccer game. I think he is going to be coming back to visit tomorrow with her but really, we never know. And right now Piper is fussing in her crib. I am hoping she sleeps better tonight but I am not confident. Tomorrow is another day of shopping (gift shop), eating out (cafeteria) and play dates (waving at strangers in the lobby)... And then we do it all again! Hopefully, her counts will make a good jump in the right direction and her cultures will continue to be negative.

ER Visit

Piper's ANC has bottomed out. When her counts bottome out her immune system can not fight off infection or viruses. This is normal after geting chemo for a week straight last week, but we have been really lucky that she has not gotten sick before. Because she can not fight off "sickness", she can get really sick.
Last night around dinner time Piper felt really warm. She had a temperature of 101. It went down to 99, then came back up to 101. So here we are at 130 in the morning on our 3rd hour in the ER at Scotish Rite. She probably has a virus that her sister had two nights ago. When Linley gets sick we have to seperate them, but in a small apartment there is onyl so much we can do. We are here tonight, and probably the next, but hopefully she will start feeling better adn as long as her fever breaks we should be able to go home.
While I type this, Piper is wide awake playing with the bottle, sometimes crying because she is exhausted and can not sleep very long because someone is always coming in to do something.
We are still looking forward to getting away to the beach next week and until told otherwise that is what we are planning on. I am fairly confident that Piper will be feeling better in a day or two and Monday morning we will be on our way to Daytona.


Monday, May 10, 2010

Monday 5/10

It been a whirlwind of a week and weekend. Chad completed his finals, Piper completed her 5 days of chemo and we moved into our own shoebox. Everyone breathe a huge sigh of relief...I know I am!

Chemo went as well as it can. Piper is such a wonderful trooper. Our biggest frustration was attempting to feed her without a highchair and to keep up with her...she is so very active! She really loves to walk around while holding onto our fingers but that is not an easy task to do while hauling a IV pole with you. Her ANC today was down to 540 and should still drop a little before beginning to rise. All the other blood work continues to look great. We began the Neupogen shots nightly on Saturday. It is intended to boost the white blood cells to keep her from becoming neutropenic and to enable her body to keep infections at bay. Neupogen does cause her bones to ache so we will see if she still crawls around as well the next few days.

Chad is done with Spring 2010! He finished each class with B's and is feeling good about taking May off. He will be taking one class this summer and hopefully working a little more to save up for Fall 2010 semester in which he is signed up for 5 classes. Yuck.

And we are finally in our own "casa de petite". Small it is but we are overjoyed with it. We spent a little money on organizing things to keep the clutter away...I get a twitch when I see too much clutter. Hopefully this will help. Linley and Piper are both happy in their new room and Chad and I both agree we have slept the best sleep in months the last 2 nights. The boxes are slowly but surely being worked through and we plan to have yet another yard sale to get rid of things that are not being used right now. I told you I twitch with clutter right? Another thing that we were happy about are the kids. Family Housing is pretty basic and we often wondered if we were the only family around who wanted to put their kids/families through all of the sacrifices that college means. And we aren't! Linley already has a new "best friend" and Chad and I have enjoyed chatting with other parents who are familiar with this lifestyle. I cannot tell you what a relief that is!

I will post some pictures of the new place once I find my camera. And the couch. And towels. And all the other things I so carefully packed away 7 plus months ago!

Wednesday, May 5, 2010

clinic 5/4

Day 2 of the 5 days of clinic chemo. I really didnt think that her ANC would be high enough to do it this week ( it was 480 on Friday and was supposed to be at 750 to start the 5 day junk). But Monday morning it was 680 and Dr Lew felt confidant that her counts would come up in the next few days before her body realized it was getting chemo and began dropping again. So we accessed her port and got her started. She has had 2 rounds of these drugs before with very little side effects and this time seems the same. Piper receives Zofran for nausea before they start and then its 2 and a half hours of chemo followed by Mesna, which coats her kidneys. These drugs are especially tough on the kidneys so after the chemo she receives 4 hours of fluids to keep her kidneys flushing it all through. All of this makes for a long day. For some reason I havent felt as overwhelmed with the ickiness of these drugs this time...I can only explain it by saying that I am beginning to fully comprehend what these drugs are doing to those microscopic, horrid leukemia cells hiding out in her little body. So instead of wanting to complain about them I am attempting to appreciate them.

Also, we got the pictures back from Flashes of Hope yesterday and they are AMAZING. I will upload some tomorrow on Chads laptop when he isnt in the throes of last minute Calculus 2 exam studying. Wednesday my mom and dad are taking Piper to clinic for the chemo, giving my back a break. Piper is crawling all over the place and it is quite a workout keeping her on the cleaned up mat and not crawling all over the nasty ground. And, eating. She doesnt have a highchair there and the stroller just isnt the same. I swear I have peanut butter in my ears from her lunch. Silly girl was a wonder. I am so very proud of the way she rolls with things, although this really is all her little mind knows. She naps, eats, plays and generally just stays busy and waving. After todays chemo she had enough beads to begin her 4th necklace for Beads of Courage...I will see if I can get a picture of that as well.

We get the keys tomorrow and I plan to clean the apartment while my Mother in Law has Linley after preschool and my mom has Piper. I also plan to go visit that lovely red bullseye for a new showercurtain. The folks who work there will be happy to see me solo without my 2 man/ladies popcorn throwing show. Hopefully by the end of the weekend we will be moved in and semi unpacked. And this round of chemo will be done and working its magic and Chad will be school free for 4 blessed weeks. I. Cannot. Wait.

Sunday, May 2, 2010

On the road again

After the fun that was south Boston and the Children's Museum of Science, we were understandably exhausted on Saturday. So we slept in and found lunch at a park. I found some beautiful scarfs and took some beautiful pictures of my daughter and off we went to the airport. Not without getting lost in south Boston again of course. I swear we had a homing device between us and there. Not to be outdone by South Boston, Cambridge also had us turned around and yes if you look on a map neither one is anywhere near the airport. And I love my sister but she is not the one you would want to be lost with anywhere, although she will crack you up throughout the process. After she dropped Linley and I off at the airport she beat a hasty path back to New Hampshire. Linley and I found a smoothie, waited to board, flew 3 hours ( not too much greenish-yellow for mommy), landed safely, got our luggage, grabbed dinner and waited for daddy to pick us up. While waiting for our ride Linley was dancing around wearing the scarf I bought on her head like a burka. A nice lady asked if Linley could sing and Linley informed her she would for tips. (Thanks Boston) And so she did. She made out with 35 cents by the time Chad wandered in looking for his travel weary wife and her still very sweetly awake (thanks "airplane only coca-cola") 5 year old daughter.
This was an amazing trip. Linley was at the perfect age to go along with all we did and Hannah was the perfect addition. Many, many thanks to my mom and dad who not only gifted us with the tickets but also cared for Piper while Chad was in class each day. I hope that this trip brings back wonderful memories for Linley as she grows a little more into a little lady. I know that the time with Linley was grand to me.

I love Boston

...just not south Boston so much. Which of course, is where Hannah, Linley and I found ourselves lost on Friday evening. It was decided that we would ride the T into the Children's Museum of Science. It was not decided to get directions and so we wandered. A lot. Past frightening people. Past needles on the ground. Not past any taxis or policemen because that would be entirely too helpful. Finally we wandered onto the T and rode North. And yes, that was our destination in its entirety. We landed in a much better area, but still lost. This time there were less needles and homeless and more cops and we got a ride to the museum and WOW, I love that place. Friday nights are a dollar per person so it was the best 3$ I have ever spent. We stayed for almost 3 hours and still didn't make it into each area.
Afterwards, not being fools, we found a taxi immediately and went to find dinner. We ended up eating fondue at 11pm with Linley wide awake and "super happy" to eat cheese and chocolate. We abandoned all hope of ever riding the T again and found yet another taxi back to the hotel where we collapsed and slept until 9. That was a blissful night sleep if I ever had one.

So much to do

I can honestly say that New Hampshire is a beautiful state. It is totally different than the south but still lovely. Hannah (and Nick) did a wonderful job of entertaining us. We painted pottery, ate Mexican, got pedicures, saw a bear (kinda), went sledding and visited Hannah at work. Thanks ya'll!

Snowy Day in NH

In Ga this would have been considered a blizzard, I am pretty sure. At the very least we would have stocked up on toilet paper and bottled water and hunkered down for a day or so. Here in NH, all I heard was a "whattt???? again????" . Linley loved it and CoeCoe helped her make an ice cream sundae thingy out of a ball of snow and some chocolate syrup. We felt very northern until I realized that I only brought layering clothes and no parkas. Sandals wouldn't have cut it much but God must have heard my plea because the snow all melted by afternoon.

Leaving on a jet plane

Want to know a secret? This mommy does not like to fly. I have been flying since I was 2 and flying solo since about 1o, but I do. not. like. it. (To be honest, its only the take off that makes me green...the rest I do fine on) I do, however, like my sister very very much. Sadly, she lives in New Hampshire and the only thing I consistently dislike more than flying is my 5 year old whining in the car for 24 plus hours. So, we flew to New Hampshire. By way of Boston to be exact...which is now one of my favorite places. More on that later.

Usually on my take off I put on some headphones and read a magazine and fade off into my happy place. This was Linleys first plane ride though and I thought it bad mothering to fade out with her so excitedly peeking out the window and asking a million questions. She was so very delightful that I almost, almost felt normal during take off. The clouds enthralled her, the stewardess were enthralled WITH her, the free headphones were a huge hit and she especially liked the "Airplane only" rule that allowed her to order a coca-cola.

During our layover in Baltimore we explored and colored and watched other families and imagined where their plane was going. My Linley has a very active imagination, or maybe it was that thrilling coca-cola...either way she was wonderfully animated while people watching and new friend visiting. We made it to Boston about 830pm and saw that very special CoeCoe. Linley and my sister have a very tight bond. Thankfully, Hannah's husband is also semi-cool and was happy to have us for 4 days. I mainly was happy that I made my first flight with one of my children and she never even noticed that mommy was greenish yellow.