Monday, December 28, 2009

Martin/Needham/Grant family pics

thank you to Mr. Don for taking these wonderful pictures of my family! As one of 4, geting us all together for holidays and stuff gets harder and harder. Gabriel and his wife Samatha live nearby and are expecting their first baby in June. Hannah and Nick live way up in New Hampshire and were only here for a few days. Nathan is in the Army and was not here last Christmas because he found Iraq more interesting and left us. Having all my siblings here and well was grand. Having my girls here and well was a blessing that I never thought I would ever think so big.

So here's to us Martins/Needhams/Grants....I love you all.

Christmas Day Continued

Christmas Day

See? More matching. And Daddy bought Mommy a flip camera for Christmas and there are many videos of the girls on there in their 2nd matching Christmas outfits...I am just clueless as to uploading that.

We actually got home late Christmas Eve and put the girls in their jammies and took lots of pictures and its a good thing too. Piper ended up sleeping through all the present opening and did her own thing around 4:00. Linley loves that big old was given to her by a friend of Chads and shes been hauling it around and lounging on it since then.

Apparently I need to post another post in order to add more pics...I need a tutorial on blogspot.

Christmas Eve with the Needhams/Wilsons

I am going to attempt to catch you up on all things Christmas around here. I am certain I will forget something and kick myself later, but here goes...

We spent Christmas Eve with Chads side of the family. Aunt Rhonda is a wonderful cook and hostess and we always enjoy spending time with her and the family. She and my mother-in-law made some yummy food that I was not required to help cook. Thank you so much for giving me the chance to spend time with the girls and not frantically cooking! We had a gift card exchange and lots of visiting and a wonderful time was had by all.
And yes, the girls are matching. Yes, I am "that mom" and yes, Linley loves it.

Thursday, December 24, 2009

Christmas Eve

Yesterday, my sister and I trekked to Atlanta to get a platelet and blood transfusion for Piper. It takes at least 4 hours to have this done and I was very happy to have company. Not that Piper was any trouble, in fact she is the most easy-going little one out there. She is sitting up without help for a few minutes and rolls all over the place. Not a big fan of being spoon fed, she would much prefer to gnaw on a pretzel or banana. Once again, I am not being the most conventional parent but alot of the mommys of children dealing with cancer have become used to feeding their children doritos for breakfast and milkshakes for a midnight snack in order either get yucky meds into little bodies or to feed sicky/picky eaters around chemo treaments. I am sure we will be able to deal with eating issues down the road.

While we were at Clinic, I was able to meet another little Pyper. I have heard about this sweetie since my Piper was diagnosed. Big Pyper was diagnosed at 6 weeks and has had quite a long journey in her 3 years. I soooo enjoyed meeting her mom, Mandy and finding another mom who has already been through all of this. Infant ALL is so differant and uniquely treated that I now only know of 2 others who have walked this is so scary sometimes but I am thankful for both the Karasicks and the Sellers for answering questions for me.

Linley is wonderful. We took her and Piper to North Carolina to a party on the 22nd and Linley had a blast. She loved being around so many other kiddos and I love watching her play with the children of my own childhood friends. You know your getting old when...

I am making a point to take my camera with me for the next few days. No need to keep my girls sweet faces to myself!

Sunday, December 20, 2009

Home again.

Thank you so much, not only for the words of encouragement about my parenting style but also to those who offered to visit and help me out. Piper and I were able to go home on Tuesday and barring any fevers, should not need to admit until phase 4 begins sometime in early January. She is still on prevacid and diflucan daily, bactrim on the weekends, dexamethasome steriod daily and the nupogen shot nightly. Combine that with Linleys nightly growth hormone and daily levothyroxine for her thyroid and really, I should have been a pharmacist. We are well. Piper is rolling all over the place but prefers to be sitting up.
We went to the clinic on Friday for chemo and it was so nice to be in and out and not walk across the way to be admitted. Piper will not have any chemo until the monday after Christmas and that too will be a few hours and then home again. The rest of phase 3's treament is oral and can be done at home.
Linley has been battling a cough. Nothing more but she is keeping away from Piper, who thankfully has not had her counts drop too much. Please pray that Linleys cough stays just that and does not develop into anything more. She is such a tough 4 year old and has only been truly sick 2x in her life...amazing!

I hope that everyone has a very merry Christmas. Around here we celebrate Jesus' birthday and I pray that you too know Him and celebrate with us. He loves us so.

Sunday, December 13, 2009

Im a good mommy, promise.

I have a very fussy and uncomfortable baby on my hands. And I am alone...I sent a text to Chad telling him that I would indeed like some "company" ( or someone else to do laps around Aflac with Piper) and I havent heard back yet so I am beginning to tune Piper out. The nurse has given her some adavan (sp) to help her to calm down and hopefully, sleep but so far I just have a 5 month old staring at me from her crib across the room.

Want to know how I calmed her down this morning after one of her fussy jags? I gave her a plastic bag. Yes, a walmart plastic bag. The ones that say "do not allow children under 75 to play with this so that they dont choke and unattentive parents sue us silly". She loved it. ( And I did tie it up in multiple knots and helped her hold it) And I was remembering another lapse in my mothering mentality, that thankfully I was able to common sense think my way out of. Ready? When Linley was younger I used to give her baths alot in the morning while I was putting on my make up or doing my hair. I am a multi-tasker to the extreme and realized this one day when I was watching her, already washed up and happily playing in the bubbles. I thought "hey, I could blow her hair dry while she keeps playing and it will save me a step towards getting us out the door this cold winter morning". Thankfully I DO know it is beyond stupid to use a blowdryer in the bathtub so I waited until she was played out to first, get her out of the bathtub and then proceed to dry her hair. It was at that moment and again today with Piper that I realized that I am the reason manufactorers put warnings on everything.

Please someone tell me that they havent also had temporary stupid mothering thoughts...I swear I am a wonderful mommy.

Saturday, December 12, 2009

Phase 3

We have now begun Phase 3 of 4 phases of the most intensive chemotherapy treatment. Half way through the roughest part and Piper is still in remission and doing well. We were at the CHOA clinic yesterday at 8am for a triple interthecal lumbar puncture, and doses of two chemos called Danuorubicin and Vincristine. The triple interthecal targets the central nervous system with 2 types of chemo and hydrocortisone. The nurses have her sedated while they do this and she did wonderfully as she always does. We were supposed to go across the street to CHOA afterwards but we had to wait for a room to be made available...Aflac only has 20 and sometimes it becomes a very full house. We didnt make it over here until 6:30 and Chad spent the evening with me settling in before leaving to sleep some before work today and being Mr Mom to Linley.

This morning came quickly, although we both slept well. Piper was up at 7:30 and has been a little fussy at times. She hasnt been napping very well, but the nurse gave her some benedryl to help her rest. And we are (always) having problems with her catheter. She leaks no matter what, every time. They put it in her yesterday while she was sedated while doing the triple interthecal because Daunorubicin is very red and very strong. Her urine in her catheter bag is pink as are her tears...we want as little of that on her bottom as possible...and it is such a pretty little bottom too. Pray the catheter quits with the shenanigans and hold up. She had a dose yesterday at clinic and another today at noon. Hopefully it will be cleared out enough tomorrow to take it out without concern of harm.

I am tired after just one night here. My best friend wanted to come help me out this weekend but had to cancel at the last minute because of a cold...and I miss her. Its rough being up here but at the same time I feel very cared for. And its not like Piper is allowing me to sit around and think about anything for long anyways. Apparently they have had 3 new leukemia daignosis in the last 4 days. As a "weathered and experianced" mother of a leukemia child, I feel so much for them. I was walking with Piper (as I do all day, every day) and I passed a grandfather in the hall crying. He was trying to collect himself but was failing and as I rounded the corner and walked away my heart began to break for that family and began to cry. I hope none of you know the pain we feel. The way your whole world becomes derailed and you have so many questions and so few answers and children at home who miss you and bills needing to be paid and surprisingly at some point it becomes do-able. And the only way to get there is to muddle through the first few days and weeks and pray and hope that other people love you enough to take care of the details. I cannot explain how sad it is. When I watch new patients and families go through this it brings it all back and I cannot believe we have made it. But I am not foolish enough to think that it was us alone who did it. Its all the prayers and its simply time. Ive said it before but I will not make it until tomorrow without your support and my God. Thank you so much...and when you pray for Piper pray for the new patients and their families.

Wednesday, December 9, 2009

Gingerbread Houses require too much attention to detail for me

As you can see we made a gingerbread house in the time that Piper and I were home with Linley this week...and as you may also see, apparently gingerbread house making is not one of my skills. Notice the flat, modern, california style roof? Yeah, thats not on purpose. Somehow I didnt notice the size differance with the walls and the roof. And icing is tough to restick. But Linley didnt notice so we were good. Not that Linley noticed anything in between all the candy and icing she was sneaking. And that is my sweet (happy/healthy/wonderful) Piper sitting so happily watching me and Linley, she was also a fan of icing.

We admitted today back to CHOA (Childrens Healthcare of Atlanta) and I will update this tomorrow with all of that information. As of right now we are good and happy.

Tuesday, December 1, 2009

no leukemia around here...

We are home. I had a blessedly busy night doing typical mommy things and am now sitting and waiting for Chad to get home from work. From the outside it looks so normal...and that is how I am going to pretend we are for the next 10 days.

Piper is doing wonderful and we are home until next Friday, if she continues to do so well. I am loving the chance to love on a well, happy baby. Its been a slow slope downward through all of this chemo and treatments. One day Piper is doing fine and then day by day she begins to get quieter, cuddlier, less interactive. I am almost glad that we ended up in the ER and hospital last week because her counts are going up, almost to normal, and she is acting perfectly fine. Smiling, laughing, diaper rash or puffiness...If we had not been admitted then her counts would not be so good and she would have spent last week feeling icky from the previous weeks chemo. As of right now she has had no chemo for 11 days and you can tell.

So for the next 9 days I dont want any talk of Leukemia around here. I intend to live in my fantasy world of healthy little kiddos, normal family dinners, Christmas prepping and maybe, just maybe, a date night with the man I love.