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Jun 27, 2010

Thank You, Pictures and Update

From Michelle:

Thank you for praying for Abby and the rest of our family for the last few weeks. Three plus weeks of fevers have been very draining for Abby and the rest of us.

Since Abby has a port that feeds almost directly into her heart, her doctors are concerned anytime her fever reaches 101. Ports are made of materials that bacteria love to cling to. This can lead to a potentially deadly infection in her blood stream. Her doctors insist we take Abby to the ER (or clinic if they have an opening) every 24 hours until her temperature returns to normal.

All they usually do in the ER is draw blood cultures and check her white blood cell count. If symptoms warrant it they might culture her urine or do a chest x-ray. That routinely takes up to 6 hours which seems like a long time, even for E.R.

Abby's fever yesterday was 104 when she was sitting quietly in our air-conditioned home. The trip to ER meant taking her out in 100 plus degree weather. Not a great idea for a "healthy" child with a temp. It is more dangerous for Abby because she is on 3 anti-seizure medications to control her intrcranial hypertension. These medications make it hard for Abby's body to handle temperature changes. We have been warned often to watch Abby for any signs of heat stroke. When her temperature climbed to 107 as we were driving to the hospital I was very nervous, especially since we live an hour away. We were able to get her cooled down to the 104s by the time we arrived, thank goodness. Thank you for praying as we were driving.

So far they haven't figured out why Abby has been running a temperature. Her lungs are a little congested but that is not unusual for her. Fortunately, even though her white blood cell count is much lower that ours, it is high enough to let her fight this out at home instead of being admitted to the hospital. If her white blood cell count gets too low they will admit her and start IV antibiotics.

For now Abby's doctors are watching her close but not giving her any medication to help her fight it. Am I OK with that??? YES! While antibiotics might help, if the infection is fungal they would make it much worse. Anti-fungal meds can damage to your liver. Abby's liver has already been abused by 2 years of chemo.

There are tests they can do to rule out fungal infections but they mean exposing Abby's already "glow in the dark" body to more radiation or to anesthesia. Would I be willing to let them run the test? Yes, if they recommend them.

For now we are watching Abby for clues to what is going on with her. They are still giving her daily chemo and she is supposed to have the dose increased next week. I get a little nervous giving her her chemo at night because I know it will lower her ability to fight the infection. BUT, the reality is her cancer is aggressive so we can't take a break from fighting it just so mommy feels better.

So far today, Abby's temperature has stayed below 101. Praise God! The kids love being at home together. Please continue to pray for answers and healing.

Friday night a good friend's daughter invited us to attend her birthday party. Abby was thrilled to get to be there. Her temperature stayed okay until the end of the party but Abby truly felt awful. She wanted to be there. Insisted on staying. But, it took a lot of effort to handle normal kid fun. The moms and girls wonderful to Abby and the rest of our family. We are blessed to have such special people in our lives.


Abby loved the party's princess theme.



Landis, Kristen, Hannah and Anna. The girls are beautiful inside and outside. Abby's tears about leaving the party were met with promises of more nights of fun.
These are girls you hope your daughters will call friends forever.

7 comments:

Mom Of Many said...

Awww, what sweet pictures. Abby truly is a princess. I have been praying and will continue to pray for Abby's healing and for wisdom for y'all and the doctors.

Holly said...

I am so glad that fever is down! I have been fervently praying since I heard. We will continue to pray. Living an hour away from the hospital is no fun I'm sure. This is Sarah's second round of chemo, and the first that we will be home during her low blood count time. We only live about 20 minutes from the hospital, but still I pray we won't have to be making many trips back and forth there with infections/fevers. Many prayers and hugs for you all...the Gilliam family

Kelli said...

She's my hero for all that she endures yet still flashes that fabulous smile. God bless her...praying always! Love y'all!

Mom to 9 Blessings! said...

Praising God the fever is down and you all got to attend the party. Yes the girls are precious with Landis :-)

Lots of love,
Jill

whenpigsfly said...

We've been prayingfor all of you jsut about non-stop Michelle, and our church is up-to-the-minute on Abby so when I ask for prayer in person or via internet for her, I know there are more prayer warriors storming heaven with you. YEsterday morning was one of those times as we all prayed together.
It was wonderful for Abby on so many levels to get to go to a party and do normal little girl stuff, even if it wiped her out...bet the times spent was as good as a lot of meds could have been for that moment...........probably did your heart good to see Abby play and be with her sibs and friends too!
Big hugs
Linda

nmassie218 said...

I will continue to pray for abbey and your family. I will pray that you get some answers soon. Great pictures! Thanks for the update.

Jo's Corner said...

Hi Michele ~ I really feel led to share this with you. I started feeling sickly a few days before Thanksgiving 2009. On Thanksgiving Day I spiked a fever of 104.3, which is high for an adult. I won't go into the whole story, but for 43 days I had fevers over 103* and up to 105.8*. I was hospitalized twice for IV antibiotics, but they did nothing. Being a former RN and having experienced fungal infections 12 times over the past 10 years, I KNEW it was a fungal infection again. But, despite my telling the docs, they would not order the blood cultures that includes testing for a fungal infection. Finally after being transferred to Mayo Clinic, they DID listen to me and ordered the blood/fungal draw. Within hours the labs came back positive for a massive fungal infection. I was in liver and kidney failure when I arrived at Mayo and was very near death. I was started on anti-fungal IV meds (which are AWFUL!!!), along with other antibiotics and had surgery 36 hours later to have my port surgically removed.

I know you have been dealing with Abby's cancer and her particular health issues and that you, as her Mama know her better than anyone!! But, if they have not checked her blood for a fungal infection, Please ask them to. I do understand any worry and hesitation of having her treated for a fungal infection, but it is the thing that will save her life. (Hope I don't sound "bossy" or like a know-it-all!) I will continue to Pray for Abby and that they can figure out just what IS causing the fevers.

Blessings ~ Jo