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Feb 18, 2010

Want to Play?

From Michelle:

Below is a longer explanation, for those who are interested AND pictures. For the rest of you, Abby's immune system is very low. To protect her, she has to stay home, to keep her from being exposed to germs her body is too weak to fight.

I am trying to do some fun, educational things while we are stuck here. Easier said than done. The walls are closing in on us and the kids miss our freedom. The safest fun thing we can do is go to friend's homes. If this lasts long we may invite ourselves over to your house. We are bored silly. Any healthy friends want to play???

The longer version: The results of Abby's blood work today were not what we hoped they would be. Abby is neutropenic (low white blood cells). Any infection is dangerous for Abby once again.

Unfortunately, a second test (IgG) showed another part of her immune system is working poorly too. Unlike white blood cells, IgG levels can be corrected with a transfusion. Great news IF the transfusion didn't cost $10-12,000 a month. It can be difficult to get insurance to pay (imagine that...). Our insurance has a life time maximum payout of one million dollars. Abby's cancer requires almost 3 years of chemotherapy and the damage from chemo can and has caused permanent damage which will require ongoing medical care. It is hard to know when to push for a test, medication or transfusion that could potentially make things better for Abby and when to conserve the resources we need later on in this battle.

What does this mean for Abby? It means we will have to stay at home in order to protect her from the illnesses that are so common in the winter. No church, school or movies for a while. Fresh fruits and veggies are a no-no because of the bacteria present on them. Abby is watching her siblings eat the blueberries she picked out after a painful test. It stinks but she is such a trooper.

When Abby's white blood cell count (ANC) is this low, any fever is an automatic hospital admission. We are praying we stay home while her bone marrow recovers.

For now, Abby will not be receiving any chemo. I hate this because it can allow her cancer to come back BUT the side effects Abby is experiencing are pretty nasty. Hopefully this break will give her a chance to heal a little.

These chemo pauses are bitter sweet. We want her to get every drop of chemo she needs to fight her cancer. But the chemo holiday will also let us see a little of the old Abby. The smiles, renewed energy and enthusiasm for life are a blessing to see while being a vivid reminder of how difficult it is for Abby to handle the poisons we keep asking her to swallow.

The chemo holds concern me but I think that the break may help Abby get some needed relief.

The MRI results were what we prayed for. No AVN (bone death)!!! It looks like Abby's leg pains are from nerve damage from one of her chemos. Of the two options, this is definitely the better one. Praise the Lord, my child has neuropathy! Now that is just crazy, huh?

Abby has a long awaited Neurology appointment on Friday. As always,we would love for you to pray for Abby and our family.

Abby and Hannah while we waited for the MRI to begin. Abby wanted everyone at the hospital to see her new Pooh pjs (thanks Olivia and Michelle).
Abby squealed when I agreed to let her wear them in public.

16 comments:

Vanessa said...

We pray for Abby each day and I keep up on your blog even though life doesn't always leave me too much time to comment!! Praying for her healing and the comfort you guys need!!

Masto Mama said...

I'm sad for you guys, especially Abby, but I'm hopeful that she will beat this someday...and if she does, what a story she'll have to tell about the grace of God! (((Hugs)))

wedogmomma said...

Thank you for the perspective....Our son's tumor was successfully removed and our taxes will cover the thousand of dollars in medical bills from his surgery and recovery. What seems like a long ordeal should be wrapped up in less than 6 months....and even if he's in a wheelchair....we are not quarantined!
I cannot even fathom dealing with a lifetime insurance cap.
You are loved, and though I have a pit in my stomach for you and yours.....I know that God will show Himself, so clearly, to Abby during this chemo rest period.
Stand firm momma, you are being used in mighty ways!

Oh well, hey! said...

I WISH we were closer - the play date in Missouri would be a stretch and a bit dangerous it sounds like this weekend ... snow AGAIN! Give Abby and all the kiddos hugs and we will continue to send our prayers your way. You are all so strong and beautiful inside and out. If I think of some fun "home bound" activities I will let you know too - I am off to teach and need to hustle early morning isn't my creative time. God Bless you - be safe and rest in His arms.

Mommy2Four said...

(I sent this to your email too, but I wanted to make sure you saw this, and my emails tend to go into spam folders....)
Brent and Michelle,

To begin with, I want to let you know that I pray for your family everyday, and that I think your family, and your marriage, is wonderful. I check your blog everyday to see how everyone is doing.

I am a mother to four beautiful kids. Two I gave birth to, and two through adoption. My littlest one is my medical kiddo. A surpise blessing, Sierra was born with a severe cleft lip and palate that thrust us immediately into a world of surgery, feeding issues, breathing issues, etc......

In my 17 months of experience being a "medical mom", I've been able to give back and help other families. I'm not a volunteer pathfinder for the cleft advocate. We help families get connected with resources in their state, provide support, share experience, etc.....

The reason why I am telling you all this, is that if "insurance wrangling" were an olympic sport, Iw ould have gotten the gold some time ago....lol. For Sierra's care, we used some pretty neat, state of the art stuff to align things before surgery. This required her to wear a dental plate in her mouth, and have adjustments made weekly on it.......... It's really fun trying to get medical insurance to cover ANYTHING mouth related to begin with, let alone trying to convince them that the charges were valid and covered for a 5 day old infant with no teeth! Thankfully, God provided me guidance and clarity in a time when my world felt like to was spinning out of control, and I was able to get Sierra signed up for some programs in my state.

No matter what insurance you have, the Medicaid program has an income waiver requirement for kids with a disability. A disabiltiy is defined by them as "any condition that is expected to last at least 12 months, severely affects their ability to carry out daily life(or moderately affects 2 or more "catagories" such as speech, gross motor, health and wellness, etc), or could result in death." Cancer fits this definition. Using this program, the medicaid acts as a secondary insurance and fills in the gaps where the primary insurance doesn't pay. The call it the medicaid waiver program, and I did a little research on your state, and it is offered through the TEFRA act.



"The Tax Equity and Fiscal Responsiblity Act (TEFRA) of 1992 allows children with physical or mental disabilities, who would not ordinarily be eligible for State Supplemental Income benefits because of their parent's income or resources, to become eligible for SoonerCare (Medicaid) "


There is also a program in your state for Children with Special Health Care Needs. http://www.okdhs.org/programsandservices/health/cshcn/

I have used our NY state equivalent before as a back-up to our back-up insurance....lol. They will cover things that medicaid won't.



I really pray this information helps. If there is anything I can do, or find out for you, please let me know.





Lindsay Kolk
Mommy to 4
Dalton 12, NCA
Rikki-Jo 8, NCA
Malik 4, NCA
Sierra 13 months, wide UCLP
STRONG Memorial's Craniofacial Team - Dr. Girotto
Upstate NY
http://www.carepages.com/carepages/SierraLynn

Pam said...

Praying you have much grace to deal with the staying at home... still praying.

Sarah2boys said...

I always hate to hear about these set backs, especially when it was looking like Abby could do normal 5 year old girl things! I wish I lived closer as I have a dayhome with a couple small children who I know would just have a ball with Abby and she would with them...although, my kids might teach her a few bad habits! This morning I'm planning on doing a craft with my kids to celebrate the olympics here (okay, well the next province over!). We're going to be making olympic medals (simple really, some cardboard, ribbon, crayons and glitter paint). You could maybe try something like that? Or we could even webcam it all together so it's like all the kids are together doing a craft!

Feel better soon and keep fighting Abby, you're one strong kid...way stronger than I am!

Kat said...

WOO HOO (on the MRI results!)...we've been waiting and praying, but didn't want to ask if you didn't mention it. We are ALL praying for Abby daily in our prayers, many times a day. With all those whom you have touched, I imagine Abby and your family is literally bathed in prayer....

purejoy said...

sadly knoxville is a bit far to travel for a play date. but i'm super happy that there isn't bone death. neuropathy is no fun, but at least it's not more serious. i know, how weird to praise a lousy side-effect issue??
continuing to pray for you and for no hospital stays and for abby to thrive during this rest-stop.

Anonymous said...

How smart to let her wear her PJs!!

Such a little thing, but such a massively wonderful thing for a child.

Anna

whenpigsfly said...

Sweet Abby! We are praying for you EVERY day adn I am sorry this is the path for now. What does God have in store?!!! We would love to have you come and visit us but we are COOTIE CENTRAL this week! There is a stomach bug going round and round here that we will selfishly keep to ourselves. Naomi would suggest canned mandarin oranges and or pineapple. Those are her favorites any time we talk about fruit. Yummy on pudding or tapioca or sweet rice cooked with coconut milk, or straight out of the cans!
We love you guys!!!
Linda and crew

Ann Brown said...

I am SO happy to hear about the MRI results!!!!! Abby (and you) has enough to deal with without AVN also on her plate. YAY!!! Praise God!!!!!

Sorry to hear she is neutropenic again, but I'm hoping and praying that this will turn out to be a blessing in disguise. As you said, her poor little body could use a break from the chemo, and perhaps her ICH might improve a bit. One can only hope, and pray.

I wish we lived closer -- Elke would love to play with Abby (although she probably couldn't at the moment as she is battling something -- had an impromptu hospital visit yesterday).

Prayers for better health, improved counts, fun indoor time, and praise for no AVN!

Ann Brown said...

And yes, the world has certainly been turned on its head when we are thankful for neuropathy!! What a crazy world we live in. But you all live in it with such grace.

Anonymous said...

I pray for the complete recovery of Abby everyday. She is such a sweet child. Our son had cancer when he was a senior so I know a little of the way it effects the whole family. May God bless you all.
I am sure you know by now not to feed her any sugar as cancer feeds on sugar.
I will continue to ask Father Patrick Peyton, who is in the precess of obtaining sainthood,to intercede to Our Heavenly Father for her cure.

Debi said...

Thanks for the update.
Praying for sweet Abby and your family.
Love and hugs and prayers,
Debi

Pam, mom, honey, said...

praying for her levels to rise quickly. do they say how long it should take