Sunday, April 25, 2010

Update time.

I am behind on updates. I know this because many of you have asked me questions about things that I asked for prayer for and I mentally go "whoops...I have got to update people on that". First off, we got the apartment! I never thought I would be so very excited about something! And we are...although one can not entirely imagine the size of 730 sq ft until they are in that apartment measuring and checking to see what all HAS to move with us and what more we can sell off. But it will be OUR 730 sq ft and we are thrilled! We get the keys the 5th of May but wont be actually moving in until that weekend because...

The week of May 3-7 Chad will have his finals and Piper has 5 consecutive days of chemo. We are supposed to be inpatient but Dr. B said that we could do it outpatient if we wanted to. I wanted to. Being inpatient is mentally and physically exhausting at best, outpatient means that we all sleep in our own beds and I get to spend the evenings with my family. Of course, it also means that I have to be in Atlanta at 8am and will be busy with 3 types of chemo for 7 hrs...hopefully we will be out of there before rush hour and home for dinner.

Linley will be finishing up Pre-K this month and we will spend the summer doing many fun things before Chad and I send her off to the private christian school that she was accepted to. I am excited, as she is, about going to "big school" but I am apprehensive as well. I so often feel that I spend so little time with her (apart from doing her hair so often, apparently) that the thought of being away from her even more is a little frightening. I am praying fervently that her teachers have extra sensitivity to Linley, especially during the times that I am gone with Piper.

Like I mentioned, Chad is prepping for finals the first week of May. He does not plan to go to Maymester so we will have a whole month to spend as a family adjusting to having our own home and recuperating from Pipers chemo. Beginning in June he will be taking one class (and hopefully working) and in the fall he is signed up for 15 hrs...Life will once again become busy. Being the wife of a student is very lonely at times. I know that Chad is working hard for this families future, but I miss him. Thankfully, I am married to a man who doesn't mind being a partner. He changes diapers as fast as me, (although he uses enough wipes for triplets) he reads bedtime stories with funny voices and honestly, if Linley wants extra cuddle time she knows that Daddy would be the likely candidate.

So I think that is all the updating I have for you. Piper has her weekly chemo push and counts checked tomorrow at the clinic. And Linley and I are packing to head to New Hampshire for 4 days to visit with my sister and her husband. I think it will be a much needed mommy/Linley time and I am leaving Piper is very capable hands between my mom and Chad. Life almost seems like it is moving forward or something... :)

Monday, April 19, 2010

New Hair 'Do

I am realizing that I post a lot of hair posts here on my blog. Interesting, since I find myself in a hat many days...must to the chagrin of my 5 year old. ( "Mommy, I'm sorry to say this to you but I don't like your hat. Why don't you have time to wash your hair in the mornings?") But Linley has been asking for curly hair and I for one, grew up in the 80's when many a pretty face was taken over by overzealous perms and I am. not. going. there. So I did for Linley a take-off on what my own mother used to do to mine and Hannahs (very fine, thin, boring) hair. After washing it, I used some spray gel and did itsy bitsy little braids all over her head. Linley took her sweet self to bed and woke in the morning very, very excited to see what her curly hair would look like. We took all those braids out and as you can see...she had that curly hair she so desired. I was pleasantly pleased that it turned out as well as it did. And Linley felt quite the queen walking into preschool that morning. Can I tell you yet again just how much I love this kid?

Wednesday, April 14, 2010

Walmart and Steroids and Ace of Cakes...Oh my.

I took Piper to our local Walmart today for the first time since she was diagnosed. I have to be honest, I am a Target girl. My budget, not so much, but my heart is true to the big red bulls eye. Walmart to me is sensory overload and not nearly enough shoes or earrings. And really, an in store McDonald's instead of Starbucks? Pshhh...nonsense.

Never the less, Piper was in awe. She was up in the front of the (incredibly icky, don't-go-there-I-just-don't-want-to-know) shopping cart in her ( oh thank you, smart inventor who knows that children need a fabric barrier to keep the icky Walmart cart germs away from their hands) seat cover just smiling and chatting up a storm. I was just one of a number of other mothers running into wally-world with one child while others were in school/at home/ locked in the car...and I have to tell you...I have never shopped at Walmart with such a carefree heart. Just wonderful.

At Pipers clinic appointment on Monday she had a LP (lumbar puncture) with a triple interthecal ( 2 types of chemo plus hydrocortisone) and a Vincristine push. She has never had any problems with sedation's and this time was no different. She began 5 days of dexamethesome steroid and I have already seen an increase in her appetite and a clingyness that only a steroid can bring...This mommy is more than a little psyched to go to her bi-annual haircut on Friday sans children. I may even get wild and crazy and get highlights. (what???) Pipers ANC was about the same and I had a chance to ask Dr. B, who was doing her LP, if that was a concern and he said no. Apparently, on this protocol, Pipers ANC is supposed to remain high unless she is receiving High Dose chemo or the 5 days of etoposide/cyclophospmide/mesna. Nice to know and maybe now I can calm myself down a bit.

One more thing. There is a show on Food Network called Ace of Cakes. Apparently, the guy (Duff) came and visited CHOA and did a cake for the AFLAC floor. Piper and I had discharged the day before so we wont be in it, but all of our wonderful nurses and beautiful cancer buddies will be. So check it out and see our second home since September...its an awesome place that I never wanted to know so well. It airs tomorrow (Thursday night at 10pm EST) and let me know what you guys think!

Saturday, April 10, 2010

Meltdown in Aisle 4

...No, not my 9 month old. Not even my 5 year old. Me. Crying. In public. I rarely cry period so this, my friends, was BIG. It was all the fault of this incredibly sweet little girl barely holding herself up in the shopping cart in front of me. I asked her mother how old she was and found out that she was 5 months old and teething. I smiled and chatted a bit then it dawned on me that I can hardly remember Piper at 5 months ago. Apart from the steriod rages, the chemo burns, the lost sleep, the hall walking, the mout sores, the round the clock feedings...I remember those well. But I couldnt tell you when Piper smiled first because it rarely happend. I couldnt tell you when she sat up because it was random, whenever her bones wouldnt ache from the chemo. I couldnt tell you what my Linley learned in preschool at Thanksgiving because I wasnt there. This blasted Leukemia has taken so very much away from my family. I began to tear up and quickly walked away feeling very, very angry. I have felt many different emotions the last 7 months but Anger is one that I fight off. It is pointless. I have no one to blame for this disease. There is no one person who caused it. Nothing specifically done to bring it on so I keep the Anger at bay. Until that sweet little girl looked at me and I realized for the first, intense time just how much has been lost. Not only Piper but for best we will weather this storm and look back with relief that we made it. At worst it will continue to steal the very things that I cannot buy. I cannot relive. I cannot even remember that I missed. And for that, Leukemia sucks.

I am a little more emotional these last few days. Last weeks clinic visit un-nerved me. And I have 2 very dear friends who are facing very big trials. One is walking through a painful, ugly, divorce. The other an ectopic pregnancy. Each friend is very special to me and I am attempting to help them carry their new burdens because both of them have helped me carry mine. Hardest off all, I have many other friends who are facing little bumps and don't know it. Their worlds are not being rocked and they will fully remember and enjoy the memories they make every day, without ever realizing just how good they have it. As for me and my 2 amigos we are learning that sometimes this world is more painful than we can ever prepare for. I heard a song today by Amy Grant called "Better than a Hallelujah" and it rocked me. I am not one for contemporary christian music much, but youtube it and hear those words. This is the awesome God in control of the ugly in our lives. He will take my angry. My friends tears. Another souls turmoil and will change it into beautiful, vulnerable music. For that, I am blessed.

Thursday, April 8, 2010

This is not what I had in mind...

... When I prayed for a redhead. My family has Irish ancestry, my own hair "pulls" red, Heaven only knows the temper is there. I just wanted one of my girls to have the red hair. I prayed for it. But alas, one is very blond and one is very bald, granted probably blond as well. Not to worry, Target had this awesome wig on clearance and I couldn't stop myself.

Only problem is that my sweet girl REALLY likes it and attempts to wear it OFTEN. Am I ready to be that cool of a mom? To let my 5 year old make such a huge decision by herself? Nah...I am entirely too particular. And Linley will thank me when I am showing the photo albums to her 16 year old crush. Yes, she will.

Monday, April 5, 2010


Want to see two of the sweetest faces on Earth? I matched them in order to up the sweetness factor...not that they needed it but because I am particular like that. Both girls were beautiful for Easter Sunday and Linley loved that the dresses "matched a little but not too-too much like twins". I loved that Linley picked out the fabric, my mom sewed and sewed away, and I got to relax and enjoy the end results.
So, our Easter was good, nice and quiet. You know, kind of like my life these days. I love it. And this afternoon we were at the Clinic for chemo. I took Linley because she is out for spring break and also because nobody and I mean nobody, makes Piper happy like her sister. Chemo went well, Pipers ANC was higher than they usually like but Nurse Mary didn't seem concerned at all. Of course, I am...I don't know nearly enough about all of this Leukemia junk to feel relaxed about anything other than "wow....Piper is doing wonderfully!". She said if Pipers ANC stayed up for weeks on end that they would up the dosage of 6mp that she gets a night or that sometimes they jump when she is fighting something off. Right now we just keep on keeping on. And for the record they like to keep Pipers ANC around 1000. She is considered Neutropenic when she has no ANC, at less than 500 she stays very close to home and far away from anyone who is sick. And she was 2,440 today. Definitely higher than assumed, but she could probably fight off the plague if it were to come in contact with her. This is me thinking positively and not worrying.
Chad got an email a few weeks ago from the Housing Dept here at UGa. It told him that the apartment selections would be available 4/12. We will just have to look online after that date and select the apartment we want and if it isn't available July 1st we will have to select another. Well, we don't want to wait until July 1st...ideally we will be able to send them an email and be in an apartment, any apartment, in May. Assuming that there are apartments available this could happen. We are also waiting to get the results of the student loans that Chad applied for so that we can afford to get that wonderful apartment. Pray that things work smoothly in the next few weeks and that we can continue our new normal.

Saturday, April 3, 2010

What?! Easter?!

Just when I think that I have this whole super mom thing down pat...I go and forget Easter. Oh, not the baskets, don't worry I filled both girls up with yummy candy and some treats. But I forgot all about the baking I was going to do with Linley. And the egg dying. And the crafts. Darn it, I was beginning to recover from feeling horrible about not doing all of the above at Christmas and BAM, here's Easter. I made it up to Linley by taking her to an Egg Hunt along with 1500 of my dearest and closest Loganvillians. She was happy and I took lots of pics to ensure that someday, when she is 15 and arguing about my adoration of her, I will have concrete and physical proof that I did indeed, celebrate holidays and shower her with loving attention. The good news is that my mom did not forget Easter was upon us and finished sewing the most beautiful Easter dresses for my girls. (Pics to come tomorrow)

We have been well and happy here. I like to joke tha Leukemia only "visits" on Mondays, when we are at the clinic, and in the evenings for the 30 minutes it takes to wrangle medications into Piper. All other times of the day we are normal. Her hair is quite fuzzy, albeit fair so you cannot see unless you are kissing it. She now has eyebrows (yay!) and eyelashes and looks less and less like a patient and more and more like the sweet healthy baby that she is. She will be crawling any day now I am certain. She prefers to be pulling herself to standing but has begun to realize that she can "scootch" a little and get to those amazing things just out of her reach. Piper easily goes from sitting to all fours and back again, although by the amount of arm waving she does she may very well just fly away. She loves to give me only. And is beginning to wave bye-bye. Piper eats like a champ and we found out that she had gained an entire lb in the week since her last visit. She is now 15.2 and FINALLY out of the 3-6 month clothes and into 6-9...Hallelujah!

Life is good and we look forward to celebrating Easter tomorrow as a family of 4. As a Christian, this day is the cornerstone of my faith. Jesus, crucified so that I can be forgiven. And rising from the dead to envelope us in His love and hope. I have found God to be both much more simple and at the same time much more complex than ever before, but the basic truth is His love is enough. His forgiveness and the hope that it brings are just wonderful icing on the cake.