Tuesday, December 9, 2008

Phase 3 - Interim Maintenance

We have had an 11 day break from going to the hospital.  It has been wonderful and overall Abbey has been feeling good.  She had a few days where she was sick, but other than those days, she almost seems like a healthy little three year old girl.  We were supposed to go last Friday for a blood check, but her numbers looked really good on Monday so they said there was no need to come Friday.  

We are still homebound.  Jim is working dayshift and Jacob goes to preschool three days a week in the morning, but other than that we are home.  One thing about our family is that we are all homebodies.  When Jim and I were young, we both were the most homesick kids ever.  We never wanted to sleep away from home (when we tried to sleep at a friends house our moms would always have to come get us because we couldn't make it through the night) and we'd rather friends play at our house.  It is truly a blessing because I really think God made us this way so we could be content with being home so much during this season of our lives.  When we first got home from the hospital I remember being concerned about Jacob being home so much (we pulled him out of preschool for the first month because of germs and sickness) and Jim was going to the store one day so Jacob went with him.  After being in the store for a while Jacob said 'daddy, I want to go home'.  I was so thankful that he said that and thought it was God telling me not to worry about us not running around and doing activities this winter because our kids just love being home.  For me it has been very freeing to just be able to focus on the kids and Jim.  We have been blessed beyond words with meals and people cleaning our house so I have been so free to just be able to focus on my family.  Those of you who don't go to our church probably won't believe this, but we have gotten a meal every other day since the day Abbey was diagnosed.  We have also had friends from our church cleaning our house every other week.  We have been blessed beyond words in so many ways! 

This Friday we are going back to the clinic for her to start Phase 3 which is called Interim Maintenance.  She will be getting two doses of chemo through her port each clinic visit and we have to go 10 days apart for the next six weeks.  The one chemo is vincristine, which she has had several times before.  She hasn't had it for about a month, but had in several times during the first phase.  The second is called methotrexate.  She has had this one in her spine, but not through her port so the side effects are different.  

The main side effect to vincristine is hair loss so the little hair that she is still hanging onto will come out this phase.  It has been gradual.  Looking back at old pictures is hard for us because we are reminded of how her blonde hair was and how different she looks now.  I don't really notice that she looks sick or feel like she looks very different from before until I look at pictures from before October 2nd.  I asked my sister the other day if we took her in public, if people would be able to tell she's sick.  Stacey gently said that she hardly has any hair left.  I think I realized at that point that I just see Abbey and I don't see the sickness.  We were worried about how Jacob would handle her loosing her hair, but we really feel like he doesn't even notice and also just sees his little sister.  The way that God has worked out so many things that worried us at the beginning has been amazing.  He is so good!   

The methotrexate will also be administered through her port.  The doctor told us that nausea and vomiting is a common side effect to this one, so please, please pray that her body handles it good and that she doesn't have that side effect.  I think nausea and vomiting is the very worst side effect and when she is sick like this it's heartbreaking.  They will give her zofran before she gets this one and we also have it at home to give her if need be, but please just pray that she isn't affected like that by it.  

She will not have a spinal chemo for another month (yeah!!) so we are so happy to have a break from the sedation unit.  Last time she was put under sedation, we really felt like we couldn't go through this part of it anymore.  She had been put under sedation every Friday for 9 weeks and each time it was so emotionally exhausting for us and we were so tired of leaving her in that room while pacing the halls waiting for it to be over. She will continue to have spinal chemo throughout the treatment, but not nearly as much as she's had it in the past.

Thank you for continuing to keep up with our story and Abbey's journey.  Words cannot express how thankful we are for this amazing support system that God has given us.  Your words to us through comments, e-mails, cards and notes help us get through every day.     


The Liegel Family said...

The body of Christ is an amazing thing. It's such a blessing that your church is really reaching out to help you guys in so many ways. I often look at the world and wonder how non-believers can even make it through times like these. It blows me away.

We are continuing to pray. Sporting my orange bracelet daily.

In HIM...


Sara said...

Being "homebodies" isn't so bad. I think it's wonderful that you and your children love to be at home. I feel the same way about our children. Someone I know with 5 children said she had so many kids so she wouldn't have to have play groups outside the home, instead, they have a play group everyday in the home. I am sure when you HAVE to be housebound it can be rough. We will be praying for this next round of treatment. I know that the grace of God will continue to abound as you continue to lay it all at His feet through each step.

Anonymous said...

Hey Shelly-

My Mom told me about what happened a couple months ago and I have been reading and praying for you and your family. Abbey is so beautiful!!

With thoughts and prayers,

Leah Campana- (Lana from clubs daughter)

Anonymous said...

It is amazing how God can speak through a child's voice (Jacob saying he wanted to go home! As I was looking for a verse for you after I read this blog, I was looking for something with strength in it. I came across Psalm 29:11 The LORD gives strength to His people; the LORD blesses his people with peace. And I thought it was fitting for you. Then, I read the rest of the psalm and it was about the voice of the LORD and how mighty it was. And I realized then that this psalm gives these images of our magnificent, mighty LORD who is strong and omnipotent and larger than life, and yet, He can speak softly and most-assuredly through a small child giving us a peace about a troubling situation. I encourage you to read Psalm 29 to hopefully see what I mean. I am sitting here amazed and awed by our wonderful God and He used your blog to do that! Glory to God!

We love you!

the Ortega's

PS Lindsay & I are home-bodies too!