KAYLA NEEDS OUR PRAYERS!!!!

UPDATE 2-2-07-

TGIF!  Twelve appointments in 1 week for Kayla and 1 for me. Wow I did something for meJ, but only because the doctor threatened to not renew my scriptsL Anyway…we got clearance from the oncologist for the upcoming brain monitor, the orthopedist removed the cast…it was weird at first Kayla starting laughing contagiously, we were all cracking up, but then they must have hit something or the bandage pulled off the cuts below because she switched to freak out. Four of us held her down while trying to do the rest of the cast. She developed some nasty pressure sores and cuts. So we have to watch and treat them. But 5 minutes out the door she was sound asleep, it was a long day /week for her. Now we wait for the insurance to clear and an isolation room to open up in ICU since she is still on lock down. They are afraid the hydrocephalus is back, her balance is totally off, eyes are crossing, she’s dropping things again, major lack of appetite and nausea back…the MRI doesn’t show anything major but with the borderline spinal tap, and all the above symptoms he is not taking chances. If the monitor doesn’t show anything he does not know what else it could be. Updates- flunked the hearing test she needs specialized hearing aides, and speech therapy, black spots popping up in the whites of her eyes but nobody knows what they are so off to the eye specialist, plus need to check for vision loss post chemo anyway, still will not touch milk but will eat ravioli and pizza but not large quantity. She needs calcium because chemo made her bones brittle. Jessica told the doctor she was not giving Kayla any meds and the doctor told her she had to or Kayla could die. Her response “ Oh nobody ever told me that” DUH, I told her a million times.   ThanksJ

UPDATE 1-24-07

So where do  begin,...hmmm...home 3 weeks, PT and OT 3 times a week, doctors at least twice a week, Jess took her out last week and she fell and broke her leg, what more is she going to go thru? I won't even start in about Jess. Next week she has a hearing test, an MRI under sedation of brain and spine, oncology, nuerosurgery, orthopedics OT and PT. I know the saw is going to flip her out totally when she gets the cast off. It's a full leg cast and it took 3 people to hold her down to put it on.Keep praying people.

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KAYLA is not handling chemo well and isnt eating or drinking. She is running fevers constantly and throwing up constantly. You can read her story below on the other blogs so I wont repeat it all. Here is the latest update from her grandma Helen. PLEASE, PLEASE pray and have everyone you know pray for lil Kayla and lets pray she gets better soon.

Its 4 days post stem cell transplant. Kayla has been through hell and still is. Her temp keeps spiking to 103, she's not drinking or eating at all. Her sippy cup used to be her comfort. The doctors said it was the same thing as a bottle but it kept her going. Now she does not even want that. I've tried everything...ice chips, italian ices, frozen drinks, room temp, warm and even hot drinks. She does not want anything. Then the infectious disease control comes in and starts asking me roundabout questions about her practices. Hello morons shes 2...oops 3  She hasn't had sex, doesn't do drugs, doesn't drink...yep you guessed it...they say she has hepatitus C. The health department has to come talk to us and alert anyone she has been in contact with. Again MORONS!I fought for donating my blood and they adamantly refused. So I flipped out on the doctors who in turn said 4 hours later that the first 2 tests came back positive but the 3rd was negative. You know I'm going to be on them for months to test her for hep and everything else she could have gotten from all the blood she had. So add that one to your prayers people. Can we say lawsuit? Then this morning I go to put her hat on her head because she was shivering like crazy and her little bald head felt cold from the ventilation system even though she had 103 but it did not fit. We have washed and dried it plenty of times. It does not shrink. So the doctors better go relook at her MRI. Hopefully Jess sticks around for a day or 2 so I can keep you posted and also get a break, not that anything changes much when she is around except for the stress levels. Hugs and prayers always, Helen

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HAPPY 3rd BIRTHDAY KAYLA!!!!!

       Kayla is the little girl we have been praying for that has my rare disease, Gorlin Syndrome (also known as Basal Cell Carcinoma Nevoid Syndrome - BCCNS). She had a brain tumor (medullablastoma) operated on  July 2, 2006 and is now going thru extensive Chemotherapy. They did not get all the tumor out. She is not handling it very well and is losing lots of weight and throwing up all the time. She is having lots of fevers, infections and has spent most of the time in the hospital. 

BUT she IS a fighter!!! God IS with her and she WILL survive!!! PLEASE continue to pray for this precious little girl. She is spending her birthday and Thanksgiving in the hospital and possibly Christmas.

If you would like to send her a birthday card or something let me know.

Her grandma who also has our disease stays with her almost 24/7 at the hospital. Kayla NEEDS a feeding tube put in but doctors keep putting it off.

This is what her grandma has posted yesterday on our support group..

Monday, Nov.20,2003, Kayla is officially 3 years old :) She just came off chemo and I am letting mom have her a little so I can catch a break since she is leaving tomorrow til Thursday or longer. All the woulda shoulda couldofs are catching up. Gee we should have put in a feeding tube since she is vomiting so much, gee we should start round the clock antiemetics but lets wait til she starts vomiting, gee, we have to run too many drugs that do not match we should have put in another line..... and the list goes on! Wow I just fell asleep typing that has not happened in a while.  Anyway, I'll keep you posted:) Hugs and prayers always, Helen

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A little girl named Kayla who is only 2 1/2 yrs old desperatly needs our prayers.

She has my rare disease/syndrome (Basal Cell Carcinoma Nevus Syndrome) and has over 100 skin cancers which they still dont really know how to treat because she is so young..

BUT the worst is that since the Fall she has been losing her balance, losing skills, not eating, and getting worse. Doctors havent got serious about it. They did schedule a MRI for the 5th but Kayla took a bad fall yesterday and they called an ambulance. They did a cat scan and found a LARGE tumor (medullablastoma) and hydrocephulas (water on the brain).

They did emergency surgery on her today (Sunday). I didnt read this post about her until today because Im having problems with my computer getting on that site.
There isnt an update yet on her and her surgery.

PLEASE pray for this family and little Kayla. She now has a TON of skin cancer and a brain tumor and hydrocephalus.  She needs a miracle.
The normal treatment for Medullablastoma is radiation tho with our disease.. radiation GIVES us skin cancer and she already has HUNDREDS of them... She will have THOUSANDS of them.. I know plenty of children with this brain tumor AND our disease and its not easy on this small children.
Thanks for your prayers. I'll let you know more when I find out about her.

<---This is Kayla

God Bless You  and Thank you for praying
Gina Marie

UPDATE 2-2-07-

TGIF!  Twelve appointments in 1 week for Kayla and 1 for me. Wow I did something for meJ, but only because the doctor threatened to not renew my scriptsL Anyway…we got clearance from the oncologist for the upcoming brain monitor, the orthopedist removed the cast…it was weird at first Kayla starting laughing contagiously, we were all cracking up, but then they must have hit something or the bandage pulled off the cuts below because she switched to freak out. Four of us held her down while trying to do the rest of the cast. She developed some nasty pressure sores and cuts. So we have to watch and treat them. But 5 minutes out the door she was sound asleep, it was a long day /week for her. Now we wait for the insurance to clear and an isolation room to open up in ICU since she is still on lock down. They are afraid the hydrocephalus is back, her balance is totally off, eyes are crossing, she’s dropping things again, major lack of appetite and nausea back…the MRI doesn’t show anything major but with the borderline spinal tap, and all the above symptoms he is not taking chances. If the monitor doesn’t show anything he does not know what else it could be. Updates- flunked the hearing test she needs specialized hearing aides, and speech therapy, black spots popping up in the whites of her eyes but nobody knows what they are so off to the eye specialist, plus need to check for vision loss post chemo anyway, still will not touch milk but will eat ravioli and pizza but not large quantity. She needs calcium because chemo made her bones brittle. Jessica told the doctor she was not giving Kayla any meds and the doctor told her she had to or Kayla could die. Her response “ Oh nobody ever told me that” DUH, I told her a million times.   ThanksJ

UPDATE 1-24-07

So where do  begin,...hmmm...home 3 weeks, PT and OT 3 times a week, doctors at least twice a week, Jess took her out last week and she fell and broke her leg, what more is she going to go thru? I won't even start in about Jess. Next week she has a hearing test, an MRI under sedation of brain and spine, oncology, nuerosurgery, orthopedics OT and PT. I know the saw is going to flip her out totally when she gets the cast off. It's a full leg cast and it took 3 people to hold her down to put it on. Keep praying people.

UPDATE 10-10-06

we might be going home tomorrow. she is not eating and barely drinking. she lost 2 pounds this week being here qnd throwing up. We hopefully will not be here for another 2 weeks , but we'll see. that will be her 5th cycle and they told me today that we will be here for at least a month. that will run into thanksgiving and her 3rd birthday keep  her in your prayers! hugs and prayers always, helen

UPDATE 9-17-06

Its sunday nite 11:15 pm. her chemo will end by midnite for today. shes been a trooper. but she gets violently ill when the chemo is over. she just had her 2nd shot of adivan for tonite but i know its not going to work. she does not get sick during the infusing but immiediatlely after. so here i sit by her side waiting for it to hit.2 more days and this weeks chemo run will be over. but the question arises whether or not she will be well enough to go home before her friday clinic chemo. we already see a marked hearing loss. her vision has been affected , most of her hair is gone and God knows what else. Keep us in your prayers.hugs and prayers always, Helen

UPDATE 9-2-06

It's almost 2 a.m. Kayla is finally asleep. She had 104 all last night. Thank God it stayed lower today. She is on so many meds I lost track. I know I check every single thing that comes in though. No repeat of last week will happen ever again. I do not see one of the nurses that made the mistake but fessed up to it. But the one that sweet talked her way out to her supervisor smiles like a chessire cat. She will not be our nurse again. We are still in holding waiting for a room in oncology. It was supposed to happen today but didn't. The doctor says we are here for a minimum of one week. That leaves us a couple of days again where we might go home before coming in again for chemo. I feel like saying just keep us. Why look forward to possibly going home only for something to cancel it out. If we are here we are here. Thats not pessimistic thinking, its reality. Its better than a let down every time. Kayla doesn't even ask to go home. She is so worn out, her energy is gone, I lay in the recliner and just hold her close and watch her breath. She thinks bugs are crawling on her. The doctor says its the chemo making her body feel tingly like things are crawling on her. So I gently stroke her body where ever she thnks the bugs are, quietly singing lullabies I used to sing to her as a baby. Lord give me my precious baby back. The energizer bunny needs to be recharged. Right now she is a floppy rag doll. Renew her strength, heal her, give her peace. In Jesus name I pray amen. For all you unbelievers I do not apologize for praying because its the knot on the end of the rope that I am holding on to right now.Without it I would not have made it this far. Hugs and prayers always, Helen

UPDATE 7-3-06

I got this update from our support group network where Kayla's grandma is checking in with updates....

Here is a brief update on Kayla:

She had a seven hour surgery yesterday to remove a rather large tumor which encompassed 1/6th of her brain.  They were only able to remove 75% of it due to location.  She had a shunt placed to help with drainage.  This morning she underwent another surgery to replace the shunt to help relieve some of the pressure as the shunt was not functioning properly.  I know Kayla's family would appreciate prayers and any cards you would like to forward to them.  I will update everyone as I have more details.

Thanks.

GM

 UPDATE 7-4-06

Update on Kayla for today:

Her drain is working better now.  She is alert but rather agitated and they are keeping her medicated for pain. 

 UPDATE 7- 8- 06

Biopsy results are in. Definitely a medullablastoma. Now waiting on the spinal fluid results to see if it spread anywhere in the body.. Scheduled for more surgery Monday morning 7 a.m. to try to get more of the tumor. Oncology feels she would need way too much chemo to try to knock it out with just chemo. She is having major ups and downs. She will giggle and try to talk and be silly and then go the total opposite extreme and not want anyone near her or touch her. They say the Jeckyl and Hyde personality is to be expected due to the trauma to the brain. She has not made any attempt to try to get up, sit up ....this from a child who I couldn't keep down for 5 minutes.Keep praying people and I will try to keep you posted.

 UPDATE 7-10-06

Here is an update on Kayla that I received yesterday:

Kayla had another operation yesterday 3 total,
totalling 25 hours of surgery. They hope they got it
all. One tumor definitely, the second one we hope, the
hydrocephalu is not letting up. They have a catheter
coming out of her skull draining big time.If it
doesn't slow down by Friday they are going in again to
put in a shunt! Now her brain juices are infected ,
she has a urinary trac infection, an upper respiratory
infection and now they say she may have diabetes,
we're waiting for the results of that one. Chemo
starts in 2 weeks for minimum 6 months.Put her on
Prayer chains big time. I'll write when and if I
can. Hugs and prayers always, Helen

UPDATE 7-15-06

saturday 11:30 they are keeping us here for the weekend and transferring her directly in peds oncology. they did not want to take the chance of her developing any more infections. so we're buckling down for another week or more. will keep you posted. hugs and prayers always, helen

 UPDATE 7-19-06

it's 3:40 a.m., she is going to get labs in 20 minutes so just when I think I might get some sleep...update chemo got postponed so that they could build up her stem cells and give some time to recoup from the surgeries. at this point she will be getting physical therapy, occupational therapy, meds and labs until next tuesday. then stem cell removal and next thursday chemo. so another 2 weeks here at least. they debated sending us home but too many things against it. she cannot walk,sit or whatever else without assistance. we live too far from the hospital for our local ambulance to get us here in an emergency, she requires constant supervision in case of a blow to the head by her uncoordination, her appetite went from adult portions to nothing etc...i am holding on by a string but momma tiger still ready to pounce if anyone comes near her. I know i am exausted but the stupidity up here is ridiculous.hugs and prayers to all...pooh (i.e. Helen - Grandma)

UPDATE 7-28-06-

      A month under our belt, is it summer outside? Kayla finally started chemo  today.she had a spinal tap yesterday and stem harvesting the past 2 days. For a 2 year old she is a trooper. basically the protocal is 6 days of chemo in hospital, then 2 weeks in clinic then 6 day cycle repeating for the next year. so 1 week in 2 weeks out for 52 weeks. unless she gets an infection , or her white count goes,or other complications then she goes back in. Theres a flyer on the bulletin board of you know your the parent of a cancer patient if...500 reasons. we are just starting but i relate to so much of it. lancastor would be a break but i do not for see it happening. we'll see how chemo goes. keep her in your prayers and stay in touch. this is a truly secluded world up here.

<----- Precious Kayla

UPDATE 8-1-06

chemo ended 2 days ago but she hasn't been able to hold anything down in 5 days. we could go home if she did.they have tried every kind of drug to stop the nausea and vomiting. every one says take one day at a time and every child is different, but i don't know how we are going to handle 52 weeks of this. they said the first round should not effect her. yet she was already having seizures, and vomiting constantly, already has drop foot which is going to set back physical therapy. she'll go backwards before she gets better is an understatement. for a 2 year old to try to go to sleep hugging a bucket instead of a bear is sad. one day at a time, one second at a time . sorry if i sound negative, its been a long month and everything i predicted happened and what they have said did not. we figured out her hospital schedule ..she should be home thanksgiving but will be here christmas. i would trade places with her in a heartbeat. watching her seize, dry heave, gag, is tearing me up. she is a baby!

UPDATE 8-11-06

Its Friday. Another day of chemo has come and gone. Right now her mom is with her. Her lap top took a spill and is gone so I have to escape to post updates. We have had so many antibiotics I lost count. She still has spiraling temps all day from 96 to 103. They are talking about removing the mediport to see if it is the cause of infection but they want to wait.  So 7 weeks later we are still here with no hope of home. I have become the floor liason. I advise parents where to go for the better snack machines,free hot water to make instant tea or coffee as long as they have bags, I try to interpret for the spanish speaking people. Boy does my spanish need mucho practica:) I started a parent graffiti board, the play room got a kick out of it. Anything to try to keep my sanity. Will do my best to keep you posted. Hugs and prayers always, Helen

UPDATE 8-12-06

advice needed on this one. today they gave Kayla 2 diffferent patients meds. the first one we blew off because we thought it was only saline but the second one thank  god i caught was an antibiotic for the boy next store 3 times the strenght kayla would have gotten. tomorrow there will be a "full"investigation why the first nurse did not report the error. I wish i was there when she administered it, i only found the bag after it was infused already. They said she did not recieve it but it would not have been left on kaylas infusion bag if it wasn't given.  I showed up right after the 2nd one and saw the bag and joked "no way it could happen twice" oops! They did it again! I had her pull it out immiediately, and the head nurse, charge nurse and doctor were all notified. But what about the first one. I want to pull kayla from here so bad but it could happen anywhere. from now on we are going to witness every bottle put in her iv and orally. And people wonder why i do not leave her alone here. both times my daughter was present...no comment. but now we are both on high alert! any advice people? hugs and prayers always, helen and to think tomorrow i was thinking about going to church for a few hours...now there is no way in ....that i would.

UPDATE 8-17-06

we're home 48 hours wow...she got an extension til next wednesday for her next round of chemo but anything can put her back in, a temp, a cough, dehydration....keep us on prayer. I'm out running... literally... errands. Paying bills, starting the mail...have to be back in less than an hour for her next meds but wanted to stop here quick and leave a post. Hopefully you will not hear from me til next week. If anyone wants to call my number is 631-475-8708,anytime til midnite is ok, her iv treatments keep us awake. Hugs and prayers to all, Helen.

UPDATE 8-23-06

We're back. It's a miracle...we were home 6 whole days.  I gave her IV's around the clock but I did not care. I do most of her stuff here anyway. They are already laughing at me because I have not sat down. I know what to expect so I prepare, sorry for being efficient. She is going to throw up so let me stock up on bed supplies, buckets, wash stuff,chux, fluids for the frig... I know by this time at nite they run out of milk, juice, blankets... I know where to find the best nitegowns that she is more comfortable in. I stocked up on her favorite videos from the playroom. They just started the chemo so I have a half hour before they start effecting her so this is my small reprieve. I'll keep you posted. We are here for at least a week. I had the room phone number on me but I must have dropped it somewhere in the hall. Keep praying! Hugs and prayers always, Helen ps the only creepy part is that we are in the room where the sweetest boy in the world lost his battle last week. I cry just thinking about it.

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Roots Take Time To Grow...

One day I decided to quit...I quit my job, my relationship, my spirituality...
I wanted to quit my life. I went to the woods to have one last talk with God. "God", I said. "Can you give me one good reason not to quit?" His answer surprised me...

"Look around", He said. "Do you see the fern and the bamboo?"
"Yes", I replied.

"When I planted the fern and the bamboo seeds, I took very good care of them. I gave them light. I gave them water. The fern quickly grew from the earth. Its brilliant green covered the floor. Yet nothing came from the bamboo seed. But I did not quit on the bamboo.
 
In the second year the Fern grew more vibrant and plentiful. And again, nothing came from the bamboo seed. But I did not quit on the bamboo."  He said. 

"In year three there was still nothing from the bamboo seed. But I would not
quit. In year four, again, there was nothing from the bamboo seed. I would
not quit." He said.  

"Then in the fifth year a tiny sprout emerged from the earth. Compared to
the fern it was seemingly small and insignificant...But just 6 months later
the bamboo rose to over 100 feet tall. It had spent the five years growing roots. Those roots made it strong and gave it what it needed to survive.
 
I would not give any of my creations a challenge it could not handle." He said to me.

"Did you know, my child, that all this time you have been struggling, you
have actually been growing roots?"

"I would not quit on the bamboo. I will never quit on you. Don't compare
yourself to others." He said. "The bamboo had a different purpose than the fern.
Yet they both make the forest beautiful."

"Your time will come," God said to me. "You will rise high"

"How high should I rise?" I asked.

"How high will the bamboo rise?" He asked in return.

"As high as it can?" I questioned.

"Yes." He said, "Give me glory by rising as high as you can."

I left the forest and brought back this story. I hope these words can help
you see that God will never give up on you. He will never give up on you.

-- Never regret a day in your life. Good days give you happiness; bad days
give you experiences; both are essential to life

God Bless xxx

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