Friday, October 30, 2009

Park/Lake/Zoo











I love fall. I love my family. I love being outdoors and so...we spent the afternoon yesterday at the park/lake/zoo in town. It was wonderful. Linley was overjoyed to be busy with us and Piper loved the colors, sounds and mommys shoulder. I wrote about this before, but it is sooo easy to forget that Piper has Leukemia. We spent the whole day running errands, eating lunch out and then the afternoon outside, and never even thought about Chemotherapy, being away from one of the girls at a time or what next Fall could be like. To anyone watching us we would have looked so completly "normal"...And I guess we are, at least the new Needham family normal.





Thursday, October 29, 2009

Another week at home


Linley and Piper...or "mini-Susanna" and "mini-Chad" as a friend calls them.

Well, we are not back in the hospital as expected. When we went on Monday morning, Pipers blood counts had dropped again and they cannot begin the next phase until she is up to a certain level. So we are home again for another week and while I most prefer to be home with my 2 girls and husband, I do want to get going with all of this. We know that the first 6 months are the most intensive and important and I just want to get it all over with. That said, the extra week at home couldnt come at a better time. Linley is out of school for fall break so we are able to spend even more time together. Halloween is Saturday so now I get to have both girls to go trick or treating with...pictures will come of them in their respective costumes soon. And Chads birthday was yesterday so we were able to celebrate as a family and still squeeze in a Date Night last night for me and him. Wonderful!







Pretty much Piper is naked unless we are in public. The air is the best for her bum but just in case we have to cover her up we have a wicked mixture of neosporin, desitin maximun relief, A and D ointment and some perscription stuff to ward off a yeast infection. I can now add pharmacist to my newly acheived "nursing degree" and "diapering pro of the year".



Linley as usual is rolling with the punches. She is an incredibly flexible 4 year old and I am so blessed to have her sweetness in the midst of all of this new, sometimes chaotic life. As some of you know she is Growth Hormone deficient, meaning her body does not produce the hormone required to grow naturally. She has the growth hormone injections each night and since beginning last November, has shot up and is now in the 2% for both height and weight. Unfortunantly, her insurance dropped her GH coverage about 3 months ago and even though we have jumped through all of the hoops they asked us to, we have yet to receive a new shipment of the medication. Please pray that it gets cleared soon.







We are still praying that God heals my sweet Piper. When you look at her she is such a normal 3 month old, its hard to remember that there are life-defying cells running through her veins. And being at home makes it so easy to forget the battle we are faced with...which is nice sometimes and disappointing sometimes when we inevitably are reminded of it.

Thursday, October 22, 2009

Our Tuesday...by Chad

Good afternoon. Piper has been home for almost a week now and is doing awesome! She is such a little angel and a joy to be around. For those of you who have not seen her and heard her laugh you are missing out on some of cutest cuteness this world had ever seen. Tuesday was to be our first visit to "the clinic" which is directly across the street from Scottich Rite hospital. We were headed there for a shot of chemo treatment for Piper. On the way a person of questionable intellegience left a sizable piece of concrete in the middle lane of I-285 west, which after traffic thinned enough to reach speeds over 50 mph quickly found the front of the vehicle we were traveling in. I would say it "quickly found the front of 'our car'", but I can't because the vehicle in question is not fully owned by said driver, yet. So...after the "hunk" of concrete found "our car", it smashed into several pieces and also found the cover to the transmission pan that houses most of the fluid and the filter for the fluid. Once I realize we are leaking something and am able to get to the side of 285, I exercise self control and only drop the (*insert prefered expletive here)-bomb 3 to 4 maybe 5 times. Now that we are stopped, a large pool of transmission fluid is pooling in front of "our car". So my good friend James picks us up and takes us to our appointment and tells me it is not that bad and convinces me to cancel the wrecker I have called to take "our car" from Atlanta to Athens and have it towed to his shop so he can fix it. This also probably saved me a from a very expensive towing bill back to Athens. Lucky for us, a local church sent us a very generous check as a love offering that will more than cover the cost of repair for "our car".



Despite our morning excitement, we did make it to Piper's appointment. She had her shot and we stuck around for an hour and a half to make sure she did not have a reaction to the medication. She did just fine. Originally, we were supposed to have a bone marrow asparate done and be readmitted to the hosptial to start her second phase of chemo on Friday, but the doctor checked her blood counts yesterday and they dropped a little from when we left the hospital so thay postponed the bone marrow and the second phase until Monday. We will be home one more weekend which is great. Her intial diaper rash from the chemo has pretty much healed, but she has developed a small spot on her cheeks that will not heal once the second phase of chemo is started. We are trying to get her little butt healed as much as possible so not to delay her treatment any longer. We will visit the hospital in the morning to have her blood counts done so the doctors can decide when they want to have her admitted and start her next phase of the chemo. We are so thankful for all of your prayers and gifts that have been sent our way. Please continue to pray fro Piper's diaper rash and blood counts so that she can start the treatment that she needs.



Chad

Here is a video. Sorry for the crick in your neck, but it is worth it. Pay no attention to the old guy with the creepy laugh. I am sure he is just doing his part to bring a little joy to the world. video

Monday, October 19, 2009

"enjoy every minute"

I am laying on the floor much longer than before. I am calmer getting out the door. I am slower to read a night time story. I am happier to hear a cry in the night. I am definitley a mother of a child with a terminal illness...I dont know how many days I have with my sweet Piper. Or for that matter with any of the people I hold so very dear but I will tell you that I became a better mommy starting Sept 16th after Piper was diagnosed. I now understand what it means to "enjoy every minute" and I do.
I have a wonderful friend who lives 2 time zones away that I still stay in contact with even though I havent hugged her in 8ish years. Way before I was a mommy, she went through the deaths of her two twin sons at birth...I have often wondered how she has made it through and been awed at her patience and joy she has while raising the children that God has blessed her with since then. I now understand that she loves her children more deeply than most moms ever think to...she understands the true fraility of life and once you get that concept you learn to love with that intensity never before imagined.
That is why although I think this illness just plain sucks...its also taught me to appreciate my girls. Each one. Every moment and every day. I just dont have the time for foolish things like showers when Piper wants to smile at me. And a walk (or a "push me up the hill again please, mommy") with Linley trumps an afternoon nap every time. I am blessed with what I have and I will not have to look back when my girls are teens or mothers themselves and think "I wish..." because I know that when my head hits the pillow tonite that my girls know I love them and I am learning just how much loving I am capable of.

Sunday, October 18, 2009

Home at last

After being told not to expect to be able to bring Piper home for the 6 months of her treatment, we are Home. On Friday (10/16) her blood counts were already back to normal so after she had her lumbar puncture and the coinciding chemotherapy we headed home until next Friday(10/23)! Of course, we have a junk load of medicines to give her every day and that is a little frightening, but we just line her and Linley up and give out meds. (for those of you who dont personally know my family our 4 year old daughter Linley is Growth Hormone deficient, meaning her body does not make the hormone neccesary to have her grow naturally and she has nightly shots to supplement it.) Piper is doing wonderfully here and Linley is really enjoying spending the time with her in a normal setting. Both have been sleeping until 9am which means that Chad and I do as well...and I have not slept so well in months even with Linley practically on top of me.

Piper is very puffy from the steroids. The inofficial name for it is "moon face", which while I dont prefer the name, I agree with it being very accurate. But of course she is oblivious. Her voice has come back alot and she makes these screeching noises along with her humming and she is absolutley enthralled with faces and enjoys spitting at you in glee. Just wondeful. Piper is proving to be as chill as Linley was and possibly even more...Chad and I are so sure that our next child will be crazy because you cant get sweet, good babies each time, right???

I do have more to write but I would rather go lay on the floor and watch All Dogs go to Heaven and play with the girls. So sorry, Ill get back to you all later.

Wednesday, October 14, 2009

Plans? Dont make any.

We are now on day 27 of the 36 day Induction phase. The next phase is called the Induction Intensification phase and will last 28 days total. Initially we were led to believe that we would be here at the hospital full time for the first phase and then here-home, here-home, here-home for the remaining 5ish months. Apparently this is not the case and we are uncertain as to when, if ever we will be able to bring Piper home until she achieves remission at the end of these very long 6 months which should be mid-March.
With the frustration of this news we have had to re-think alot of plans we had brewing. Chad will be attempting to defer his enrolling in UGA for a semester until we are done with the first 6 months. We will "live" with my parents until then to keep Linleys world as normal as possible and really, whats the point of renting a place we may or may not be able to sleep at??? Chad will be going back to work pretty soon as we still have expenses and bills. And Linley will hopefully, be able to do a few sleepovers here at the hospital so that I can feel a small semblance of how my family should be.
The good things that I am trying (sometimes fruitlessly) to remember are that Chad has a very flexible boss who will work with him and his schedule. Linley has a wonderful and supportive preschool that she will now be able to finish out the year at. We have a great network of friends and family that want to help us out. And most of all, Piper has made it through the first phase without contacting any infections. This alone is an awesome acheivement and we are so proud of her little, puffy, sweet self.
I have been asked to please let you all know specifically what to pray for and I am sorry that I keep forgetting to do so. I guess I am still not quite able to comprehend all the prayers that are being thrown up for my family. So we are asking for continued prayer that her diaper rash does not worsen. That we would be able to go home soon to recharge. That UGA will defer Chad without any complications. And that God will continue to pour His peace out on us.

Monday, October 12, 2009

I am a diaper changing pro.

Just suppose you were to have to change your (tummy sleeping) 3 month old child every 3 hrs round the clock, even though every mom knows NEVER to awaken a sleeping child. Because I now consider myself a pro and the Mother of the Year so I am going to share my tips with you. (hey...if Obama gets a Nobel Prize for having great ideas/plans, then I surely should get Mom of the Year just for multiple middle of the night diaper changing creativity.)

#1: Put your child in one of those (usually very pointless) gowns. And socks to her knees. That way her bum is already semi exposed and yet her legs remain warm.

#2: Put the correct sized diaper on backwards so that those crazily loud velro straps are on the top and you dont have to dig under her tummy searching for it at midnight. Or 3am. Or 6am.

#3: Put a diaper 3 sizes bigger than the one she wears so that the inevitable leak is semi-caught.

#4: Because the urine is only semi-caught, place layers of chucks absorbant pads and receiving blankets under her belly so that when your sweet bundle of joy pees through both diapers you can throw a layer away. And another layer again at midnight. And 3am. And 6am.

#5: When actually changing the diaper rely alot on your sense of smell and basic dark shapes to know whether you are wiping off the layer of "spackling textured" diaper rash creme or actual poop.

#6: When the bum smells no more or the dark shapes look a little less dark...add more "spackling textured" diaper rash creme liberally.

#7: Put all of your sweet little ones layers back on and cover her up and look down at her and think that surely. surely. surely. THIS child will never tell you that you dont love her. That somewhere deep in her pre-teen memory she will vaguely remember layers of diapers and the smell of that "spackling texture" diaper rash creme and will know that it means you loved her more than 3 consecutive hours of sleep. Of course, the lack of 3 hours of consecutive sleep did make you think you were qualified for Mom of the Year because of a few fuzzy diaper changing tricks. But overall you will know in your mind that you love that little chunkey monkey way more than you ever thought possible. And she too will love you. Surely.

Saturday, October 10, 2009

Moving on Up.

We are moved. Thanks to my parents, mother-in-law, David and Ginger,Nakia and Dustan (Eli too), sweet Kara and my best friend Miriam we have taken all of our belongings and placed them in a 10x10 storage unit until January. Yes, all of our lifes belongings have fit into a 10x10 storage center but thats because I am slightly (overly) weird about clutter and things that have no place. Plus, I have to fit myself, Chad and 2 girls into a 720 sq ft apartment on campus with minimal storage. How? Who knows...I am always up for a challenge and am already planning the decorating part. And now a wonderful friend is taking over all the rest of our belongings which we left strewn around the house and will sell it for us at a garage sale...thanks Kara!


Linley is still in North Carolina with my best friend and her girls. She calls me every night to have me pray for her and I cannot tell you how much I miss her. Or how blessed I am that Miriam willingly and eagerly met me half way and has loved on and cared for Linley as only a mommy can these last 3 days. Thanks you! Piper is a doll as usual...my mom came to the hospital to stay with her while Chad and I took 24 hrs to pack and move. I came back to a very contented and sweet girl. We talked more with the Doctor on call this week about Pipers temporary vocal paralysis and got more encouraging informatione. Apparently one type of chemo, called Vincristine, is what causes it...she had a 3% chance of it having this side effect and sure enough, she did. So the Doctor canceled her Vincristine that was supposed to be given yesterday (friday) and is waiting to see if the vocal nerves begin to repair themselves in which case she will be given much smaller doses next week and the following week as well. We already are seeing some more "pitches" coming out of her mouth and hopefully she will be able to receive the full chemo without further complications.


I am really enjoying the nurses here. I was told that the turnover rate for pediatric oncology nurses is high but the ones that I have met really seem to love their jobs. And I love having their experiance, laughter and comeraderie as they work so hard to heal my little one. A few have even shared that they are Believers which calms me so much...Knowing that those also pray for Piper as well as treat her. Just another way I am feeling so cared for in the midst of the unknown.

Tuesday, October 6, 2009

scared

This afternoon after dropping Linley off with my mom, I headed down hwy 316 towards the hospital and had a good cry. I have never been so scared in my life...never felt so alone. I am so worried about Piper and her health, so worried about Linley being lost in all this shuffling around, worried about Chad and I and our marriage...just overwhelmed with worry. And please dont tell me that God is taking care of me or that its going to be ok...because I know that. I know in the long run I am going to make it, irregardless of how sweet Piper does. And yes, I know that God loves me but I also know that we live in a fallen world and that sometimes bad things happen no matter how hard I pray or cry or yell. I trust that the peace that has covered me the last 3 weeks will continue no matter how much I rail against God and I hope that when all of this is said and done, good or bad that I will look back with a newfound trust in God...no matter what.

Monday, October 5, 2009

what a weekend.

Before we found out about Piper, Chad and I were feeling very blessed. We had not one, but 2 beautiful and healthy girls, our marriage is stronger than it has ever been and Chad had just been accepted to the University of Georgia. Excuse me a minute while I brag on him a little...Chad has kept his GPA steady at a 3.5 while being a loving husband who loves date nights with me, an involved father who is not afraid of changing a dirty diaper and loves to play soccer with his oldest and working a full time job. When he was accepted to UGA we applied for family housing, which is essentially an apartment for families on the campus. We planned to move out of our house the middle of December...but then we got Pipers diagnosis.
The little house we rent is actually Chads grandmothers. And although we have put many, many, many hours into it the house still has no ventilation or central heating or air. We do not feel comfortable putting her compromised immune system in the midst of that, plus we have parents who get really excited at the thought of their children back under their roof. Ok, my mom does and my dad loves us and loves the fact that surely we wont be there forever...right? The plan now is to stay with my parents until December when we move on campus. Which is why when my best friends Miriam and Kara told me they "wanted to help in any way" I put them to work helping me pack...we got alot done on Saturday and I am hoping to have the house empty within 2 weeks. I feel a little bit discombobulated with my belongings here, at home and some at my parents place. ugh.
But back to Piper. On Friday they did a Lumbar Puncture (spinal tap) and gave her chemo specific to her central nervous system to continue to keep the leukemia away from there. Saturday she was here with my mom and my "second mom" Aunt Marilyn and we got nothing but good reports when we got back to the hospital at midnight. For some reason though Piper had a very rough night Saturday night and I was up with her most of it. Her temperature had spiked by Sunday morning and that combined with the diaper rash she has developed, the doctors decided to start her on antibiotics and treat her as though it is an infection.The blood they drew on Sunday will take a few days to get back and until then she is on antibiotics and good cream for her hiney. Also, Piper has always been a vocal little baby but the last few days she had begun to sound like a kitten...very small and weak. This weekend it was been decided that she has temporary vocal paralysis due to a specific type of chemo done last week. It is very, very uncommon but dont you know Pipers little voice is mainly gone. While it is very pathetic to hear her attempt to cry, she is not in pain and her voice should be back to normal in 6-9 months. Her mood had improved signifigantly by early afternoon and she even chose to smile for some of our visitors, and we had not seen a smile out of her for a few days. And last night she slept from 1030-430am, got a bottle and slept in until 930...it was much needed rest for all of us.