Friday, May 1, 2009

Home Sweet Home ....

Arrived home last evening.Glad to be home but filled with a bit of apprehension.We have never come home knowing she will bottom out while here.They warn you that by the time you are ready to head back 5 days later,you will certainly see in your child the effects.Hemoglobin will have drastically fallen along with platelets,white and red.All resulting in an over all lethargic feeling for Zoey.Coupled with that will be the drop in her ANC.Her ANC rose from 780 to 2600.The reason being,is that it is her bodies stress response to the onslaught of chemo.Similar to what happens when the body is trying to fight infection.The good thing is that she had neutrophils ready to pop from her bone marrow in a protection of sorts,from her chemo.We have to be vigilant in watching for fevers and if we are going to see them it may be as we head closer to the five days home.If she spikes then we go straight to the Emergency Department at CHLA.Scary place these days.Most you see there are masked due to the Swine Flu outbreak.85% of the population that CHLA provides services to,is Hispanic.With the influx of not only patients but visitors as well,there is a very real concern of a Swine Flu outbreak there.Actually,it is only a matter of time.We so hope Zoey can stay fever free until she is admitted on Tuesday.Yesterday was a difficult day for the little love.She spent the majority of the day throwing up.This round they gave her a 24 hour bolus of her anti-nausea medication and it really was the wrong choice for her.Every other round we have kept her on smaller doses around the clock.Next week we certainly will not make that mistake.Poor baby.We finally had to give her a dose of Benedryl to knock her out and give her some relief.By the time we headed home she was a world better.We continued to wake her for her eye drops at home but will discontinue that this morning.Today she woke with that trademark Zoey smile and we are glad to see that back.Tomorrow Jessica and Matt graduate from Pepperdine.Hard to believe.Four years flew by.Zoey will not be going to graduation,even with it being outdoors.Too risky.I have two friends that will be coming to sit with her for a few hours and all I need to do is give them a crash course in G-Tube feeding.To us it is second nature but to others it is quite intimidating.Tonight we are having a graduation party for Jessica and Matt.My sister and brother in law again have graciously offered to open their home for us to host a gathering for one of our children.Since moving to the townhouse we are limited in the adequate space department.We have a taco guy coming to do tacos.Crowd pleaser for everyone so it should be a relaxed,laid back,fun filled evening.Caitlin and Danny will be home as well.And thrown into the mix is Matt's playoffs for the final four for the volleyball championships.Full weekend with much hope and prayers that Miss Zoey decides to behave herself and stay feeling well and fever free.That's the update here.We are kind of all over the place.Much like my mind and body these days.I am never quite sure which direction I am heading and am often just in survival mode.Doing what needs to get done and trying to enjoy the moments as I go along.Prayers all around for the Needham's please.We have a lot going on and all of it leading up to the final half of the last round for Zoey.I find it so hard to believe that that moment has arrived.Blessed that we,or rather she,has gotten to this moment.There is never a day on the 4th floor that that reminder is not given :We are, despite the current circumstances,blessed beyond words.Today I ask all of you to pray too, for a few of our little friends who are at pivotal points in their battles.First for Kai,who received his Bone Marrow Transplant on Wednesday.He needs prayers for his little body to accept his donor marrow and in the words of his mom,"We pray that these YOUNG stem cells can find their way quickly through Kai's blood and nestle in good and tight."We pray also for sweet little Madison who's tiny 4 year old body is fighting like a true warrior against neuroblastoma and all the horrible side effects of her treatment over the last last 6 months.And finally for our special love Sol Merie,who Zoey is not only connected to by an extra chromosome but AML as well.Sol Meri's journey is nearing the end and word has come that her family is bringing her home,to love her and release her outside the confines of the cold and harsh walls of CHLA.Knowing this child has been a privilege and a blessing and her infectious smile and beautiful kisses will remain with me forever.Please remember,each and everytime we leave the hospital,we leave so many that we love.My heart is always connected there,it always will be a place of indescribable sorrow but immeasurable blessings.Have a great weekend everyone.Thank you for your love.

13 comments:

Kristy said...

Wow so much going on!! Congrats to Jess!! What an accomplishment!! I know I have said this before, but I still see these girls as little 10 year old girls on the soccer field..its hard to imagine that they are now grown women!!! Big huge prayers to all the little warriors you mentioned..just a tragedy that these sweet souls have to endure such pain. I wish you the best for Princess Zoey in the next few days. your family is always on my mind and ALWAYS in my prayers!! xoxoxo

Kele said...

So glad your home!! Too bad I don't live closer, I could for go the crash course on g-tube feeding and you guys could be on your way... altho tacos sound good too, would it be hard for me to choose?!? NOPE! Tacos sound good but what I would give to be Z's babysitter for a night...heaven!!
Love you guys and Congrats to the graduates!!

Michelle said...

Glad you are home, glad you are half way through, glad Zoey is taking it all on like she usually does...far better then any of us would. Sorry this she was so sick, but so grateful this will all be over soon for her, for you, for all the Needhams.
You guys have been on my mind non-stop this week...hoping, praying and counting the days...My love and prayers to all of you and of course, HUGE congrats to the grads! YOu must be so proud of all your kids...they are all blessings!

Anonymous said...

Zoey - so glad you are home and with your smile intact! I'm sorry that yesterday was not so smooth for you. You are an awesome princess/warrior for sure. I'm hoping and praying the next few days are fever free and you get back for the final leg of this very long 6 month journey.

Sounds like a huge weekend in the Needham household. Congrats to Jessica and Matt. Hard to wrap around the idea that the little blond sweetheart who traveled up to Otisco Lake here in Syracuse until you were 2 1/2 is now graduated from college! Whoa!! time does march on..

And special prayers for all those angels of CHLA.

Love to everyone at the Needham household

Bluebelle

Lacey said...

How nice that you get to be home for your super busy weekend. If only Zoey could go to. Soon enough, she will. I know how hard it is when you become friends with other warriors in the hospital. We know all to well, we lost a fellow trisomy 21 from severe pulmonary hypertension. And we still keep in contact with some. Its also nice to see kids that were so sick who are normal happy kids now. We are keeping sweet Zoey in our prayers as she takes on this final round. Give her a kiss from me and Jax!!

Anonymous said...

Go Zoey Go!! Heartfelt congratulations to Jessica and Matt. Have fun celebrating those accomplishments. Wow. Prayers and peace for 4th floor friends. Love abides precious Zoey. Big kiss from Christi Harman

Reagan Leigh said...

Awesome! I'm so glad you made it home so early. I can't tell you how excited I was to read this post! I was wondering how you would make it to the graduation with Zoey still in the hospital. It's amazing how God works. Prayers that Zoey's stay at home is problem free! You're almost done little girl!

scrappy quilter said...

So glad you are home. Continued prayers for Zoey that she won't spike a fever. Congrats to Jess & Matt.

Dawson said...

So glad to see you guys are home. Prayers as always go out to that precious girl that all the germy things will stay far away from her while she recovers. Give her love from her Alabama friends

dg darling said...

Praying for beautiful little Zoey and all her friends. These amazing little spirits are such an inspiration! May Miss Zoey have added comfort and health as she battles this leg of her journey. Prayers from UT...

Renee in SLO said...

Prayers and encouragement go out to Zoey and the other warriors from CHLA. Shout out to all the Needhams - we think of you often and send lots of love and prayers your way. Big Congratulations to Jessica and Matt (mom and dad too)! Good luck as you begin the next part of your journey... wherever it takes you. Hang in there, you guys, and Zoey, be strong and keep smiling :) Hugs to all of you. We miss you so much!!

Samantha said...

Praying for you and your sweet little Zoey. She has THE BEST smile I have ever seen. Every time I see her picture I can't help but smile back at her...

WOW! You are a busy mom! Congratulations to Jessica and Matt. What an accomplishment! You must be so proud!

I am so sorry to hear about Zoey's friend. I will pray for them all. It must be so hard to see so many little ones fighting so hard...

oleyfriends said...

Hello!

I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families like yours with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Tube Feeding Complication Chart -- in can help you in teaching friends/family to g-tube feed your daughter. I can also send you another booklet on basic tube feeding at home to aid you in your teaching efforts.

• Tube Feeding Tips page
http://www.oley.org/tubetalks.html

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY