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.