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May 28, 2010

Abby Update and Photos

From Michelle:

After the hospitalizations and weeks of being quarantined for low white blood cell count, Abby's white blood cell count is now dangerously HIGH. Why is this dangerous? Since Abby's cancer mimics healthy white blood cells, any time it is producing a lot of white blood cells there is opportunity for the remaining cancer cells to start mass producing too.

Abby's oncologist is out of town and no doctor or PA in her office wants to follow the protocol and increase her methotrexate. Abby is one complicated little booger. I get that. But I am her mother and I want her to have every chance she can have to beat this disease. I am thankful that God doesn't need my help (or theirs) to heal her. I also know that God sometimes cares for our children by giving them parents who will advocate for them. One of the hardest things about being a cancer parent is knowing when to push for something and when to let things go.

Looking back over the last two years, the things that haunt me the most are the times I didn't push hard enough for the help Abby needed.

A few weeks ago, Abby's neurologist increased the medications for her intracrainial pressure. One of the nastier side effects returned. Abby's CO2 dropped to the point where she stopped breathing every few minutes while she sleeps and was taking at least 7 naps a day. Abby's neurologist and pulmonologist say that when your CO2 is low your brain tells your body to breath slowly or to hold your breath for less than a minute (multiple times and hour), so that you wont exhale as much CO2 . Normally you will begin to breath again when your oxygen levels dip too low but because Abby is on 4 medications that are sedating, has had notable changes in her brain from the chemo, and trama from the increased intracrainial pressure, they don't trust that her brain will kick in and start breathing again when it needs to.

Thankfully, we have an oxygen monitor at home which will alert us when she is in danger. Unfortunately it alarms several times an hour, so it is not the easiest of solutions. When an alarm continually goes off there is a real danger that exhaustion will cause you stay asleep even when it screaming at you. Fortunately for Abby, Brent sleeps very lightly. Unfortunately for Brent, I don't.

Abby's neurologist has been out of town, so I have changed her diet in an effort to help her. It is helping but most of the time, but her CO2 levels, as of today, are still too low. We are hoping medications can be adjusted in a way that solves this problem. I have a call into her neurologist now. Please pray that the team of people caring for Abby can understand what is going on with Abby and come up with a solution that works.

Abby is enjoying her summer. Her soccer session has wrapped up and she is spending a lot of time playing outside and swimming every chance she gets. Abby's is still talking about how much fun she had at the Patterson's ranch. Even though we didn't know how well her immune system was functioning, we decided to let her ride horses, pet animals and roll around in the dirt like a "real" kid. We pray about it and felt giving her the freedom was the right thing to do. Now that we know how high her immune system is working, I am very glad we did.

From Brent

Here are some photos from our visit with the Patterson's last weekend...


Abby and Keifer practicing karate moves.


Lorraine saying goodbye to Abby. We sat up and talked with
Lorraine and Mattie until a tiring 2am but treasured every minute.


Meribeth, Michelle and Mattie... the Patterson girls are gems.


Hannah teaching Abby to ride a big bike. Abby still has
a lot of weakness in her arms and legs but that doesn't stop her.


See the bike? Keifer (adopted from Haiti) got this little finger stuck
in the sprocket but Dad (Matt) and bro (Parker) were there to rescue him.


This is the Forgotten Saw of Forgotten Saw Ranch...
the tree has literally grown around it. Classic.


Matt giving Abby yet another horsey ride. He is GREAT with kids.


It is just as quiet and peaceful and beautiful as it looks.


The hacienda at Forgotten Saw Ranch...
a barn converted into a magnificent house.


Abby and Mattie


Mattie with Abby and love struck Landis.


Normally, the backlighting from sunny windows ruin a shot,
but I thought this shows perfectly the view from inside the house.


Landis has it BAD for Mattie... can you tell?


Whether riding a horse, or an alligator,
Abby is ready for any adventure no matter how she feels.

3 comments:

Shannon said...

Oh! I am praying for Abby, that the Lord will guide the surgeons to the perfect treatment for her....praying also for you guys as you wade through this with her, that when you sleep it will be supernaturally restful. Thanks again for the honor of praying for you guys...
The pictures are beyond beautiful, I looked through them with tears running down my cheeks...just so meaningful...

Blessings on you guys,
Shannon

Courtney Kay said...

what a beautiful celebration... Chrissy's home-going and Abby enjoying life!

how did the kids do with the funeral and the death of a young friend... does Abby talk about how close she has come?

Sweet Joni said...

Ever so precious :-) How wonderful you were able to stay with & spend time at Forever Saw Ranch!!!
Looks like Spidey's cheecks are actually red with Mattie holding him, ha too cute!
The smile on Abby's face sitting next to Mattie is priceless... so adorable she is.

175 days left... Come on Abby - you ARE the Warrior Child!!! *hug*

Love & Hugs to all,
~Joni