Friday, November 7, 2008

Early Friday morning and I was unable to get to the computer yesterday.Each time I passed by, it was being used.Today we are going to once again try and get someone up to check on the wireless in our room.What a difference that would make when it comes to keeping in touch with everyone.Six work orders have been put in so far and still,nothing.So frustrating.Zoey had another really great day.She had a PT session and was full of energy and spunk.It is so strange.Mark and I have both noticed an INCREASED energy level since she started treatment.I have no idea what to attribute it to but it is actually such a relief to see her so engaged and wanting to interact and play and definitely flirt with one and all who comes into her room.Her ANC level was 190 yesterday so ...today may be the day that zeros out.White count is 1.2 and platelets dropped 30 thousand.They are at 44.However,they ended up transfusing her because they have found that her port, that administers chemo,iv fluids,and draws blood,will heal better if we keep her above 50 thousand.Her hemoglobin remains at a level where she can put off a red blood transfusion for a bit longer.Once again the day was uneventful and we are so blessed that another day is under her belt with nothing out of the ordinary popping up.As for the rest of us ...yesterday was a tough day for us.Some more than others.Me especially.That grace state kind of went out the window.I found myself angry to be here.Angry to not be able to be doing what once seemed mundane tasks.Angry to not be home for the rest of my children and for them to not have Zoey and I home with them.I tried to push down those feelings but found I was better off to acknowledge them and move on.I am not sure I have exactly moved on but I am at least trying.Well,I better head back to the little love.Morning around here will begin before long.Mark will be here tonight.Jess will be coming home and I will stay home until Saturday night.The balancing act continues.The scheduling of the boys,who watches them and where they need to be,continues to be a challenge.But with any luck we will be settling into a groove next week.Thank you again for all the prayers of support.Thank you for loving us and our family and most especially Zoey.Hopefully my feelings will circle back to that happy place today ..... I sure hope so.

10 comments:

Anonymous said...

Heather we continue our prayers daily for you and your family.Thank you for the updates on Zoey.It sure is wonderful to see her doing so well.We love you,Helen and family

Anonymous said...

Heather - love those photos posted yesterday. I think in one Zoey is giving everyone the "thumbs up" signal. "Bring it on, I can deal with this"!! And that smile - awesome

Hope you are able to rest a little when you return home. I'm sure the boys and Taylor will be happy to have you with them. Taylor is doing an amazing job. She is carrying on her older sisters' traditions.

Hello to Mark too - Rest my nephew, rest

Love to all

Bluebelle

theresa cruz said...

Heather I'm so happy to hear that Zoey's energy level is good. God is blessing this child and showing you his love through her daily. Wish I could help more, but know the prayers continue for your whole family. Your marriage is an inspiration for all of us, give Mark a hug and a high five from all of us that love how he is there for you and the rest of his family. Zoey, keep smiling and staying strong, feel God's love and hold on tight to him. We love you little one.
The Cruz Family

Anonymous said...

Dear Heather, it's a good thing that you have this forum to express your emotions and it's natural to have competing ones, delayed ones, and they are all validated. We love you, and send prayers and healing thoughts. The news appears to be positive overall and Zoey is doing wonderfully well. Take heart. Take care, Christi Harman

Kele said...

Loving you guys and wishing I was there to help. I literally feel sick to my stomach when I read posts about the juggling act that I know about all to well.
I soooo wish I could be there to take on a load for you. But we are praying, praying like hell and we will not stop!!

ntmjbmom said...

Heather, I can totally empathize..my son was just released after about an 8 month hospitalization over at UCLA for brain cancer.

The separations from my other kids, the juggling of their care, the mundane things of life that I longed to be doing, missing and longing to have our life back..all these things are sentiments, deep feelings that I can relate to.

Hugs,
Amy

Carey said...

Just remember, while the cancer is aggressive, so is the treatment. It will be over before you know it, and you'll be thinking, wow, I can't believe we made it through THAT! You have the extra aspect of coordinating more children at home, I can't imagine, one was enough, and he wasn't even in elementary school yet, so that helped a bit.

Don't feel bad to ask for help! Hugs to that precious little girl!

Cleo said...

Zoey’s grace surrounds her as a protective shield ~ . The divine intervention of GRACE doesn’t work according to the laws of linear time, that’s why it has the power to heal in no time.

Heather, every choice me make, spoken or unspoken, influences the atmosphere of the place where we stand or the room we have just entered or left. What matter most is not the choice itself but the reason behind that choice.
If we choose something out of fear, pain or anger, the result of our action may be unsatisfactory or unstable; if we choose IN FAITH, the outcome of our action will take us in the right direction, bringing us the most power and clearest guidance and we will be connecting with the energy of “Grace”. “Grace’s energy” is a vibrational force of such power that it can lift you out of your immediate circumstances. It can fill you with the perception that there is nothing you cannot handle and that all will be well. The power of GRACE is a combination of the energy of LOVE, hope, and fearlessness. Concentrate and give all your energy to HEALTH and HEALING. Having FAITH in the energy of the DIVINE will keep you connected with the power of LOVE and GRACE.

We will continue to keep Zoey and all of you in our positive thoughts. Sending LOVE and HEALING ENERGY your way. Praying for strength, healing, comfort and peace during this time.

Much love.

Cammie Heflin said...

It is so hard when our babies are away from home and your others are there. Bless your family and try to get some rest. Zoey is such a doll and a fighter!

Michelle said...

You dont know me, but i followed your blog from Pam's blog. We are both members of IHH and the same daughter that has a heart-defect is also Down Syndrome. She is only 2 months old. Zoey is so so beautiful...she has a face of an angel. Our family will add yours to our daily prayers. Thank you for your strength...it's inspiring!
-Michelle