Monday, March 29, 2010

Spring? Is that you?

This was the first weekend that 1) the weather was beautiful 2) Chad and I were home with the girls and 3) Both girls were feeling we spent the better part of Saturday outside. Linley had soccer practice with Daddy, aka Coach and Piper hung out in the Baby Bjorn with me on the sidelines. We came home and Chad headed out for his afternoon of refereeing soccer and I made the girls lunch. Piper has become a very eager and happy eater and we finally had to just pick up her highchair and bring her outside to finish up while Linley and I played. She loved it and moved to the blanket where she happily watched Linley and I help my Dad spread out mulch. And can I tell you that I love the smell of mulch? And soil? And trees with blossoms? I miss Chad and I's little house for many reasons but a big one was the garden. I spent many an hour at the garden outlet and subsequently on my knees in the dirt. I loved it and especially miss my butterfly bushes and confederate jasmine....Chad misses close to nothing about gardening but even he was proud of the work we put into it. Someday we will have a yard again...someday. And until then I will continue to help my Dad out, especially when the girls enjoy it as much as I do.

Tuesday, March 23, 2010

Clinic 3/23

Piper had her weekly Clinic visit today. We were scheduled for a Methotrexate "push" (when the chemo is pushed into her port as opposed to a drip) and a IVIG transfusion. IVIG is a immune stimulant that Piper gets every now and then to continue to keep her immune system up while undergoing the chemo junk. Our appointment was at 11am and we headed that way after dropping Linley off at school. The IVIG takes about 4 hours and we planned to be out of there by 4ish until the CBC results came back and Pipers hemoglobin was 7.7. Anything below 8 is reason to do a blood transfusion so we had to do that as well. Chad had a friend pick him up from the clinic so that he could make it to work at 7, but I was there with Piper until 6:30. It was a long day but Piper got plenty of attention and thank God, she is finally off of those steroids. Her ANC was 770 so we are out of the so-called "danger zone"...she is able to be out and about. All her other numbers looked good and we continue to keep Piper on the same path.

Tomorrow we are back in the clinic for an amazing opportunity. Flashes of Hope will be there in the morning and we are signed up to have not only Piper, but Linley's photos taken. Flashes of Hope is a non-profit organization that takes photos of children who are living with Cancers and other life-threatening diseases. We simply show up and they have hairstylist, make up artist and photographers who are there to spoil the kids and make them look beautiful. I have been wanting to have this done, but they only come about 1 time a month and we have not been able to make it. Now, Piper is happy, cast-less and totally in love with her sister. (She is even "sprouting" hair but it is fair and not easily seen.) I am really looking forward to this and I hope the morning goes smoothly and and happily.

Monday, March 22, 2010

We ran away to Atlanta...

...for 48 blissful, quiet and much needed hours. It was only Chad and I's second weekend away since becoming parents in 2005. We had big plans about taking a week cruise in February way back when, you know, in before the diagnosis and life changed immensely. We promptly put that on the back burner and focused on getting our little family through the initial 6 months of chemotherapy treatments. We made it and we celebrated by leaving both girls with my mom and dad while heading to Atlanta.

Chad and I stayed here at the Westin downtown. And it was all a wonderful gift. It began by my best friend Miriam noticing that Chad and I were, shall we say, a little frazzled??? It may have been the ginormous amounts of coca-cola and coffee we were living on or maybe just her being the loving woman that she is...she got all of her family together in the attempt to give Chad and I something to look forward to. Miriam explained our situation and the inability to actually confirm a date when purchasing the gift certificate and it was passed on to the hotel manager who instead of working with Miriam, gave us not only the weekend for free, but also dinner for 2 at the Sundial Restaurant. It was wonderful. I cannot tell you how much we needed it and how much we appreciated it but we did and we did.

We spent time walking downtown. We spent time eating yummy food without answering 20 questions or cutting food into tiny bites. We ordered room service and watched movies. We woke up slowly with no one needing us for anything immediately. And I was treated to an amazing massage downstairs in the spa. Our view on the 61st floor was breathtaking and we spent alot of our time simply standing next to the huge, beautiful windows just watching the world below us.

So thank you to every one who was involved in this grand treat. When Chad and I celebrate our 50th anniversary with most of our hair intact and the ability to still smile, know that it was you guys who helped get us there. Thank you!

Thursday, March 18, 2010

Dads Night

Tonight was Dad's Night at Linleys preschool. She has been talking about this for a week and made a big deal out of picking out the perfect outfit for both her and Chad...including perfume and lipgloss for Linley. And to make it an ever bigger deal to her, Chad stopped on the way home from class and picked up flowers for her and surprised her by ringing the front door and picking her up. (It is NEVER too late to teach your daughters how a man treats a lady.) I was tearing up at both of them. The last 6 months, while more difficult than I ever imagined, has given Chad and Linley a remarkable relationship. I no longer am able to be there for Linley 24/7 like I was the first 4 and a half years of her sweet life, and Chad has stepped up to the plate like a pro. The soft "Daddy" out of her little mouth when she opened the door and saw him standing there with flowers for her was priceless...and simply proof to Chad that the last few months of spreading himself so very thin, has been so very worth it. She really loves her Daddy.

Monday, March 15, 2010


I am racking my brain to think of the updates that I know everyone wants and yet somehow, things are wonderfully easy. There simply is not much to report. Piper began Continuation 1 today with a Lumbar Puncture called a Triple Interthecal ( Arac, Methotrexate and hydrocortisone) is given to kill off any straggling leukemic cells hiding in her Central Nervous System. If you remember back in the beginning, the Drs were not able to find any and we continue to keep her that way with Triple Interthecals done monthly. She did well and woke pretty happy. We gave her Zofran throughout the day to keep her from nausea and throwing up and so far so good. Dr. Lew continues to be optimistic and encouraged by her progress and response to treatments. Just what we hope to hear! We were in and out by 1030pm and spent the rest of the day chilling out with Linley. Chad had class so I grabbed Linley from preschool and headed to the pharmacy. Our pharmacy is an old fashioned kind of place with an ice cream bar so Linley got a cone, Piper fell asleep in her stroller and we walked about 2hours. Picking flowers, chatting, playing "freeze" whenever we saw a school bus. It was a beautiful way to spend the day.

On Thursday Piper gets her cast taken off! I will be so happy to finally, after 6 months of one thing or another, to stick my kid in the bath and really let her just play. No CVL, tape, casts or press and seal...just a dirty little girl getting clean and playing with one very patient big sister. Piper gets 5 days of steroids beginning tomorrow so we are getting ready for her to be a wee bit fussy. OK, who am I kidding. The girl will probably be glued to my hip but I am just happy its only 5 days as opposed to 2 weeks.

All is quiet here tonight. As always, thanks for the support!

Friday, March 12, 2010

Hurdle #1 acheived

I realized a little while back that there are 82 people who get emails letting them know when I have updated this thingy. And because I don't recognize all the names and because others whose names are not included know things I write on here, I am able to assume that you all want to know about my little family. This blog was began to chronicle Pipers journey with Leukemia, but it was specifically chosen to be a family blog spot as opposed to a caringbridge or a carepage. I did not want to focus solely on Piper when I also have a vibrant 5 year old, a husband putting himself through college and the typical day to day things that a mommy does and feels. I felt then, and now, that this is only a phase of our life. A rough season. A dark era, but an era, season and phase none the less. We WILL not be fighting this battle for the rest of my life. Good and Bad comes and goes. Life begins and ends. And we continue to look forwards with Hope and behind with a smile.

That is why I am thrilled to let you know that Piper has completed those 6 months of chemo that we so feared. It was as frightening as I imagined and yet, we were Held. I always feel Held. That may not make any sense to you, but it is the simplest and truest word to use to explain the last 6 months. God has Held me. He has done many, many things as well but overall I felt Held. I felt His arms when my Piper was sick with a fever. I felt Held when she was covered with chemical burns. I felt Held when Pyper Sellers lost her sweet little life. I felt Held when I had nothing more to give and still managed to walk another lap with Piper. Or to play one more game with Linley.

Life is easier these days. Piper hasn't has any chemo in over 3 weeks. She isn't having any Neupogen shots. Her nightly meds are easily given orally. And she remains in Remission. I am surprisingly nervous about beginning less intense chemo. Obviously I am thrilled to have a happy, sweet baby girl in my arms without icky and constant side effects. But this is when we find out whether the last 6 months of chemo have done the job. Without the umbrella of constant chemo we will see just what her body is made up of. So frightening. I have divided the 2 years of treatment into 3 hurdles. That is how I keep from being too terribly overwhelmed with the enormity of this all.

*Hurdle 1: Completion of first 6 months of intensive chemo still in remission

*Hurdle 2: Completion of entire 1 year of chemo still in remission

*Hurdle 3: Completion of Maintenance (second year) still in remission

*Hurdle 4: Remaining in Remission for the year after Maintenance ends

This is a long journey and relapse in always in the back of our minds. But right here, right now Piper is doing wonderfully. Her body has proven strong than we could have hoped for and we are praying that the nasty drugs that beat her up have done their jobs. We pray to never hear the word relapse ever and that we are able to look back at the end of Hurdle 4 and sigh. So with this hurdle leaped I am both thrilled and fearful but mainly I am simply happy. So very happy that we are here. Thanks for your prayer all 82 of you (plus some) but please do not stop. We are not at the end and are still very much engaged in a battle for my daughters life that I am intending to succeed in.

Wednesday, March 10, 2010

Sunday 3/08/10

My best friend brought her 2 daughters to celebrate Linleys party this weekend. Miriam and I have been friends since birth and always thought we would have children at the same time. Instead we have 4 girls, 7,5,3, and 8 months between the 2 of us. Thankfully they enjoy each other..except at bedtime. :)

We went to the park on Sunday instead of church. Linleys fever had gone away but we were still watching her. It came back Sunday night but she never complained about anything more than a fever and a headache...until we were in the Drs office and then apparently she let us know that her throat hurt also. Come to find out, she actually had Strep...After being confined to Chad and I's room with lots of Amoxicillian, OJ, a DVD player and a pile of books for 24 hours she was running at full steam. Thankfully, Pipers ANC was totally recovered from the chemo 2 weeks ago and she has shown no signs of any yuckiness. I am going to post tomorrow about a "hurdle" that we are almost over. Yes, the first 6 months will be complete tomorrow. My feelings are hard to explain but I am going to give it a good 'ole college try. Tomorrow. I think.

Sunday, March 7, 2010

Happy Birthday (Party) Linley!

As most of you who keep up with us may know, Linleys actual 5th birthday party was the 16th of February. Unfortunately, was due another inpatient round so we chose to wait on her "friend" party until Piper was home and hopefully, recovered enough for both her and Chad and I to all go to the party. The party was yesterday and it was Wonderful! Linley has always wanted a party at one of those bouncy house places but we always chose to go with parties at home. This year we opted for Jungle Jumpers...1) we have a severe lack of time to plan details and 2) Linley deserved the extra, extra, extra mile this year.
My best friend and her 2 girls came to the party and stayed for a sleepover. Poor Linley began complaining of a headache and being tired at the party and by 9pm was running a fever. She woke up this morning feeling just fine, but began running a fever again this afternoon at the park. We are keeping her away from Piper while Piper's ANC recovers to a better level, but mainly we are praying that the fever is merely the result of a busy week, not much sleep and lots of excitement.
So, thanks for all of you friends who joined us yesterday to celebrate a beautiful 5 years olds birthday. Happy Birthday (Party) to Linley...