Tuesday, May 12, 2009

What's Next?

Abbey is doing beautifully (doesn't she look great?!!)!  Her cheeks haven't been this rosy in seven months and she looks the healthiest she's looked in a long time.  It's an amazing thing to be able to say that! She has been feeling great and has had tons of energy.  Tonight during Jacob's t-ball practice my mom and I took her over to a nearby playground and I think she went down the big slide 30 times.  Her energy level is completely normal right now and there is nothing better than seeing her like this.  

We had a really nice visit with grandmom and grandpop from Philly and it was so nice to have them here!  They got to see one of Jacob's t-ball practices and his last indoor soccer game while here.  Other than those couple of activities, we spent our time at home and outside just hanging out and being together.  Of course Abbey and grandmom did nail painting and Jim, his dad and Jacob had some projects to work on, one being working on Jacob's jeep (it's had some mechanical problems lately).  Mothers Day was so relaxing. Jim and his dad pampered us from morning till night and they made us a delicious dinner.  When I laid in bed that night I didn't even feel tired because I hardly had to do any work the whole day.  It was nice :)

I want to say a HUGE thank you to the mommies from MnM's (our church's mom's group) from Western Reserve Grace!  Today after their monthly meeting, a dear friend Bethany dropped off this amazing, thoughtful, beautiful basket of goodies for me for Mothers Day.  When I tell you our church has been AMAZING to us, it is not an exaggeration.  They have been there since day 1 and continue to love us and walk with us through this.  I was overwhelmed when I read each card and looked at each gift.  There was so much thought and love put into each note and gift so thank you each one of you who put that together for me.  We have been blessed beyond words by so many and I personally have been encouraged by you all more than you'll ever know so thank you for your thoughtfulness.  This was the most special mothers day for me and today was the topper to a wonderful weekend :)  I love you guys!!

So, I wanted to let you know what's next in Abbey's treatment.  We are heading back to the clinic this Thursday for a numbers check for her.  Her numbers need to be recovered to 750 ANC and 75 platelets for them to start with her first maintenance cycle.  She will have 20 months of maintenance.  If her numbers meet the criteria for starting, she will get spinal chemo (methotrexate) in her spine and a dose of vincristine in her port on Friday.  She will be on several medications at home over these next 20 months, with some being 1 day a week, some 5 days a month and some being everyday.  Doesn't sound like much of a break, but she then will have a 3 month break from the spinal chemo and will just get one chemo per month in her port.  
Her numbers will soon start to make a comeback and shouldn't be low for the remainder of her treatment, but right now they are still recovering from the last intense phase.  Since her chemo isn't as intense from here on out, her body will consistently be stronger and less vulnerable to infection.  

She is still getting the two shots a day of lovenox for the blood clot in her brain.  I actually have been giving them at 10:30a.m. and 10:30 p.m. so for the nighttime one she is sleeping.  I was so nervous to do it for the first time at night because I didn't want her to wake up tramatized that I was giving her shots in her sleep, but she hasn't woken up yet since I started doing the one at night.  She is such a deep sleeper and she moves a little once I give it, but doesn't fully wake up.  That has been a wonderful finding for us since she only knows of getting one a day.  The daytime one is going o.k.  Each day is different where sometimes she fights it more and other times she gives in quicker.  We are 6 weeks into them and they said it usually takes 3-6 months for the clot to dissolve.  Please pray that it's closer to the three months because we are ready to be done with them.

Does all that make sense?  I was thinking that it may be a good idea to let you all ask any questions that you may have for us about her treatment.  So, if you have any questions, please feel free to ask them in the comment section.  It all gets a little confusing and overwhelming at times, but one thing I can say for sure is that we are past the worst and although a long road ahead, we are confident that we will make it through the rest :)   

Love to you all :)


Mel said...

Our son, Pierce, was diagnosed with ALL in December. I have been following your blog for awhile - you have been keeping us up-to-date with what to expect next. Pierce will be finishing the port chemo portion of delayed intensification on Sunday, and the pill portion on Friday night - the day before his 2nd birthday!

Thank you for being such great parents, and thank you for being wonderful at communicating what is going on with your family. You all gave us an incredible sense of peace entering into this phase of treatment - thank you for being such a blessing to us.

Bethany said...

Wow, I have tears in my eyes after Mel's comment...you are really having an impact on others Shelley & Jim, even those you don't know! How amazing that you can help another family know what to expect as they go on a scary journey like yours. Mel, you couldn't have picked a better family to follow because they are sure to put you at ease, even in the toughest of times during Abbey's fight against this!

Shelley, fantastic idea about doing the second shot of the day at NIGHT! I would've never thought of that. How wonderful that Abbey doesn't wake up and doesn't realize what is going on. We will keep praying that the shots can be done with in 6 more weeks. Abbey has already proven to be a little fighter so I know her little body is giving that blood clot a run for it's money!

And finally, I'm so glad you had such a wonderful Mothers day. Good job Jim for making her feel special all day!

Terri said...

Abbey looks great!!!

Love all the pics..thanks for sharing...

Continued prayers :)


Suzanne said...

It's wonderful to see your child's energy level rising up after such intense rounds of chemo. Praying for the clot to dissolve quickly!!! Continued prayers for Abbey's journey to becoming forever cancer free :)

Love in Christ,
A friend in childhood cancer

Andrea said...

What beautiful, uplifting pictures! Praying the blood clot is completely gone the next time they check it.

On a topic unrelated to this post...I'm considering whether homeschooling is where God is leading me for my children. My daughter will be going into first grade and was interested what curriculum you found for Jacob. Also, I wondered how you managed to work around Micah's needs. I have 4 and 2 1/2 yr old sons and another on the way, so am weighing how I balance their needs into this option.

If you like, you can email me at bea813@cox.net.

Thanks Shelley and praying your pregnancy continues to go well.

Love in Christ,

Aggie said...

Abbey looks great! I am so happy to read that she is feeling so well!

Anonymous said...

Abbey looks GREAT! She is such a beautiful little girl - I just love her big smile...she looks sooo happy. Glad you enjoyed your Mother's Day weekend and glad YOU got to be spoiled! Praying Abbey continues to regain her strength, and her clot is quickly dissolved.

Annapolis, MD

The Bennett Bunch said...

I've been wondering for months how to start this comment, so I've decided to just jump into it.

I found your blog though a prayer chain and your sweet little Abbey has been in our thoughts and prayers!!! The first post I read about your little family was actually the one you did on the Lemon Chicken. I prepared it for my own family and proceeded to tell my three little girls about your sweet Abbey and what she was going through. Their hearts were touched!!!

Since I have three little girls I am always making flowers and bows to go in their hair. Well, my girls said that they thought that we should make some with some head bands and sent them to Abbey. I agreed, but not wanting to seem to forward I didn't quite know how to talk to you about it. So, if you would like and be willing, I would love to put some things together for her.

Please email me if you are interested: acben@etv.net

We will continue to pray for little Abbey and your sweet family.

Good Luck in everything and my God Bless you ALL!!!


dana said...

Oh my goodness Abbey looks fabulous...what a darling little doll. I'm so thrilled for you that things are going well and you all are entering this new phase. We are praying for you...all of you as you walk this journey. It's never easy.

Thank you for your comment about the Lovenox shots, we are going to talk to Camryn's doctors about a night shot instead of days...hoping they are game to at least try it.

Thank you for your thoughts and encouragement, I appreciate it!

Many thoughts and prayers!

~ dana