Perseverance is everything. Morgans Mission of Life

Still here

2011-09-16T06:16:00.001-07:00

Still here living reality day by day...
Morgan is doing pretty good, she has her days like everyone.
She is having issues that we have to figure out whats causing them

news about the princess of miracles

2011-05-23T08:46:00.000-07:00

We are doing pretty good. We had some tests done and Morgan has no more of the "growths" she was vomiting and they dont think they will come back this time. However she does have an esophageal ulcer, gastric reflux, slow gastric emptying, and the inner lining of her stomach is so sensitive that is bleeds easily.
There is nothing that can be done for the slow gastric emptying or the sensitive inner lining but she is on a med for the other 2. On to other news we will be heading to St. Jude July 19th for scans and testing so prayer warriors lift her up in prayer

"RELEASING THE BAD"

2011-05-23T08:42:00.000-07:00

Saturday May 21st, 2011

My friend Steph had Morgan release some ballons to allow her to release the bad. Check out www.caringbridge.org/visit/miraclemorgan for pics.

We are doing good.

2010-11-30T07:12:00.000-08:00

We are doing good, we have a great thanksgiving. We have alot to be thankful for. We hope you all did too. We continute to live life daily even with its hardships and trials... we just sail through with a smile.

Childhood Cancer Awareness

2010-10-14T08:50:00.000-07:00

http://www.facebook.com/elizabeth.fogakoldyke#!/pages/We-need-a-CURE/118396044884659

http://www.facebook.com/pages/Morgans-Mission-of-Life-Perseverance/132908850095130

I am not able to do alot for others monetarily, but I can use my voice, share my story, and help spread awareness for childhood cancer. The 2 links above are pages on facebook that were created for just that reason...

Well here we go again....

2010-10-14T08:29:00.000-07:00

UPDATE UPDATE UPDATE:
She has a mucus plug in her left lung, which caused a mild

collapse, and due to the collapse bacteria grew and caused a certain type of

pneumonia. The antibiotic she was on wont touch this form of pneumonia so they

had to switch it, we are stress dosing her steroids, and we had to double her

meds she inhales in her breathing treatments she gets every 4 hours. We have do

watch her very closely, and we are praying we can stay home and not end up

inpatient

We have to force fluids, and do acupella, percussion, and

flow meter therapies...

THANKS FOR THE PRAYERS SO FAR, AND PLEASE KEEP

THEM COMING.

Please be sure to go watch MORGANS YOUTUBE video that was made for her:

http://www.youtube.com/watch?v=04eaPafcrKg

www.caringbridge.org/visit/miraclemorgan
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please keep Morgan in your prayers... her heartrate is up, and her oxygen is down and keeps dropping even after breathing treatments, so she is on her way to hospital to have xrays and tests run. So far they are thinking either pneumonia or a mucus plug in her left lung, please keep her in your prayers

REMISSION BABY

2010-08-05T12:10:00.000-07:00

PRAISE YOU IN YOUR NAME GOD.. I PRAISE YOU IN YOUR NAME.....It is OFFICIAL MORGAN IS IN REMISSION FROM HER AT/RT CANCER SIGNED AND DATED 8/5/10 BY HER ST JUDE DR .. PRAISE YOU GOD.

The other tests they did showed improvement except activity which is due to her neck issues, but we will take it!!!!

Thank you EVERYONE for the prayers... th......ey work, she is proof.

XOXO to you all....

Long Lost Update

2010-07-20T10:39:00.000-07:00

Long lost update....

Well since my last entry.. Morgan got her halo removed and she is now in a cervical collar, and doing pretty good. We go to St. Jude aug 4th-8th for lots of testing so we ask that you please pray all clear and all well....

Praise God...prayer works...

2010-05-11T20:20:00.001-07:00

UPDATE...UPDATE...
On the MRI they did thoracic and cervical and it was all ok...Praise God!! The pins in her head did move BUT they DID NOT penetrate the brain, no fracture to her skull, she did however sprain her back. She has been discharged and is now home. Thank you for praying for and checking on Morgie.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Morgan was home yesterday and had tripped while walking but her big brother Ethan caught her blindly. Well they noticed she was having alot of pain, and there was blood around one of the pins. Well within half hour to hour 3 of the pins had blood, so they called the dr and they ordered a ct scan to be done... so they rushed Morgan to kosair.... who because shes so special got rushed right back as a priority.. they did a ct of her neck, head, and back.

As of right now they are inpatient they are wanting to keep an eye on her, and they have ordered an mri to be done. The ct scans appeared to be ok, but they want to be sure. She is still having alot of pain.

Please pray that the MRI has only good results, and the princess can go back home.... please pray that the pain can be managed, please pray that all is ok... and please pray that the princess can have her celebration on Saturday.

wow where to start

2010-05-11T02:30:00.001-07:00

im not good at remembering to come here and update, sorry...
well we were all doin good with the exception of a cold... well until yesterday anyway when Morgan was home yesterday and had tripped while walking but her big brother Ethan caught her blindly. Well they noticed she was having alot of pain, and there was blood around one of the pins. Well within half hour to hour 3 of the pins had blood, so they called the dr and they ordered a ct scan to be done... so they rushed Morgan to kosair.... who because shes so special got rushed right back as a priority.. they did a ct of her neck, head, and back.
As of right now they are inpatient they are wanting to keep an eye on her, and they have ordered an mri to be done. The ct scans appeared to be ok, but they want to be sure. She is still having alot of pain. Please pray that the MRI has only good results, and the princess can go back home.... please pray that the pain can be managed, please pray that all is ok... and please pray that the princess can have her celebration on Saturday.

we will be HOPEFULLY celebrating her REMISSION on sat may 15th.. it now depends on what the mri shows... please pray for the princess of miracles...
thanks...

NOT CANCER PRAISE GOD ALOUD

2010-04-13T08:15:00.002-07:00

Ok Prayer warriors lets just say.. prayers work and miracles happen... the spot in Morgans liver is.... NOT CANCER......PRAISE GOD!

The 2 surgeries she had was 1 liver biopsy and the other was to have the halo placed in which she will wear for a minimum of 3 months.... she came through both just fine.

2 surgeries 1 day

2010-04-13T08:15:00.001-07:00

Ok prayer warriors Morgan came through both surgeries, they got the halo placed.. thats all details I have.. will update more as soon as I can. Thanks to everyone!!!!

Update on the PRINCESS

2010-03-29T15:59:00.001-07:00

Well for the GOOD NEWS.. as far as surgery on her belly as in gallbladder removal she is doing great, and she has even gained 7 1/2 pounds.. YAY GO MORGAN.

On Thursday she will have a CT without contrast on her liver to decide whether or not to have a CT WITH CONTRAST to see what the status is on her liver and then decisions will be made as to what to do..

Now unfortunately on to the not so good news:
On her NECK... this is the bad news.. so please PRAYER WARRIORS PLEASE PRAY SEND MORGAN UP IN HER PRAYERS...
she has been having headaches and wierd feelings in her hands, they think looking at the XRAY the bar that they placed in her neck to help her neck has literally pulled through the bones because her bones are so bad as in soft and brittle.
She has the bones of a 70 yr old lady with severe osteoporosis. They are going to do further tests to verify things but the dr told Beth that it appears that they are going to have to do yet another neck surgery on Morgan and she will be in a halo for a minimum of 3 months.
There is a MAJOR RISK of infection as well as very scary risks as in the first surgery she had.

PRAYER WARRIORS WE NEED LOTS AND LOTS OF EXTRA SPECIAL PRAYERS FOR MORGAN AND HER FAMILY....

Morgan loves to get mail so we ask that if you can could you send her a thinking of you card:
Morgan Fogakoldyke
634 Beech Road
laconia, indiana 47135

Also if you could send BETH a card to let her know you are thinking of her as well that would be great, she is literally scared to death again for her daughter and the hell they have already had to endure and are getting ready to further endure.

home...

2010-03-24T08:05:00.001-07:00

We are all doing ok, Morgan is healing, and she is eating. We go back to the dr on the 27th and hopefully then we will find out more about when she will have her liver biopsied. Thank you everyone for the prayers, they are GREATLY appreciated.

gallbladder removal and now home

2010-03-18T03:32:00.001-07:00

Morgan came out of surgery just fine...PRAISE GOD and so far is doing pretty good, HOWEVER... they were not able to biopsy the liver the dr didnt feel he could get to the spot safely, so there will be more news on that as it comes in, for now PRAISE GOD Morgan is doing ok.

3/12/10

2010-03-18T03:31:00.001-07:00

March 12th Morgan goes in for surgery to have her gallbladder removed and hopefully to have her liver biopsied, BUT we have to wait and see because of where the "SPOT" is in her liver... keep her in your prayers. They are going to go in this week and do an upper GI to verify nothing else is going on in her little body, causing her pain and such.

update

2010-02-12T18:36:00.000-08:00

DRUMROLL........Morgan is HOME!!! They released her today, so she is home!! PRAISE GOD!!!!

She is still having pain, but overall doing ok. She still has the blockage but it has moved down some, she has had no temp. She still has inflammation though.
PLEASE PRAY HER NECK "TAKES" as in grows/heals together.

PRAISE GOD though that there is nothing wrong with her appendix YAY. Once she is strong enough she will have her gallbladder removed and her liver biopsed. We are PRAYING that the area in her liver is a benign adenoma, so we are asking for prayers for that. So please pray the spot is NOT CANCER! At this time they can not go and biopsy it, because she is too weak for another surgery at this time.

see the power of prayer

2010-02-11T07:49:00.000-08:00

Well we PRAISE GOD that Morgans pain is getting to be managed, and she has been up moving around, however she keeps running a temp, and at this time they have no idea why. She is also having inflammation and the CRP count is still up, and it should be coming down, however its not. They did find a blockage in her upper intestine and they are thinking this is causing her inflammation and temp. She will be having a CT today (wed feb 10th) to look at the blockage better and get a better view, they are also going to look at her gallbladder and see how it is, and they are going to check her appendix, because they said the appendix can cause temp and inflammation. Please keep her in your prayers.

PLEASE PRAY THAT THIS BLOCKAGE DOES NOT PERFORATE HER INTESTINE, PLEASE PRAY IT RESOLVES SAFELY....

To the spot in her liver they are thinking it is something called an adenoma (which is not cancer), at this time we are hoping its that.

Power of Prayer

2010-02-11T07:47:00.000-08:00

Morgan had to have a very risky surgery on Thursday February 4th, 2010 on her neck, and with the power of prayer she was able to come out of it, with them only having to go through the back of her neck instead of the front too, and she does not have to wear the halo as anticipated. They placed her in the halo and pulled her neck, and they were able to get her neck to reduce enough to where it is where its suppose to be to begin with now. PRAISE GOD! PRAYER WORKS.. Morgan is proof... and Miracles happen, because she is one...

Praise God

2010-02-05T15:57:00.001-08:00

PRAISE GOD her surgery went great, and she is doin ok.

In his hands...

2010-01-26T12:52:00.000-08:00

Morgan will have to have a very risky and scary surgery done on her neck on Thursday February 4th, so I ask for prayers that nothing happens between then and now to her so she can have this surgery, I also ask for prayers that the doctors have all the knowledge they need and make the right choices to get this done properly, I also ask for prayers that this surgery HELP Morgan and she comes out of it just fine. I know that God is not through with Morgan yet..and I know HE is in control...
I do question and I do ask though.. why her.. why us.. how much more... but I know he holds the biggest plan of all for my sweet girl.

When we were told she had cancer in 2004 and told that she had very little time our world fell apart, and our lives turned upside down.. I can say I am a strong momma, but I to fall apart and need help at times.

So PLEASE pray for MORGAN, pray for her doctors and pray for us.
Beth and the F TROOP!!

I know that all things are possible in his hands..

I have...

2010-01-26T12:48:00.002-08:00

I have seen "REAL" faith and "REAL" courage through the eyes of my daughter. I have seen "REAL" hope and "REAL" miracles happen through my daughters eyes. I have seen "REAL" fear and "REAL" perseverance through my babygirls eyes. I have also seen a"REAL" hero turn into a "REAL" princess and that is my little girl.

and yes there is more...

2010-01-26T12:48:00.001-08:00

meningitis and beyond

Ok guys we need all the prayers we can have now:
They are running tests to see if her ventricles are dependant on the shunt or not. Her shunt was full of infection, as was her central line. The cultures are showing that nothing else is growing.
They increased her pain med, and she is still feeling alot of pain. Her breaths drop down to 8 a minute. They did an abdominal untrasound/catscan and it showed thankfully no pockets of infection. She is still confused. The antibiotic is working.
*On a good note she is eating and drinking*
**Beth asks that we all pray hard for Morgan right now, she needs all she can get, and ask that God not be done with Morgan yet**

Streptococcus Meningitis is what Morgan has. They pulled her central line and gave her a sub clavian line and they externalized her shunt, that surgery went well. She is on 3 strong antibiotics for this. She is in alot of pain. She can't turn her head because it hurts. She is also not talking. Please keep her in your prayers she could use all she can get. They are not saying whether or not they have caught this virus in time or not. I will update more as I can. Thanks for checking on her.

God is not through with our Miracle yet.

Ok guys we need some prayers again:
Morgan is currently at Kosair in ICU. She is having surgery today to have her shunt placed outward. She is tehre because she had a fever and some type of infection well they are now telling me the infection is
Bacterial Meningitis (not sure if that is spelled right or not) of the blood and brain.
Here is some info about this: Meningitis is an infection of the fluid of a person's spinal cord and the fluid that surrounds the brain. People sometimes refer to it as spinal meningitis. Meningitis is usually caused by a viral or bacterial infection. Knowing whether meningitis is caused by a virus or bacterium is important because the severity of illness and the treatment differ. Viral meningitis is generally less severe and resolves without specific treatment, while bacterial meningitis can be quite severe and may result in brain damage, hearing loss, or learning disability. For bacterial meningitis, it is also important to know which type of bacteria is causing the meningitis because antibiotics can prevent some types from spreading and infecting other people. High fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years. These symptoms can develop over several hours, or they may take 1 to 2 days. Other symptoms may include nausea, vomiting, discomfort looking into bright lights, confusion, and sleepiness. In newborns and small infants, the classic symptoms of fever, headache, and neck stiffness may be absent or difficult to detect, and the infant may only appear slow or inactive, or be irritable, have vomiting, or be feeding poorly. As the disease progresses, patients of any age may have seizures. Early diagnosis and treatment are very important. If symptoms occur, the patient should see a doctor immediately. The diagnosis is usually made by growing bacteria from a sample of spinal fluid. The spinal fluid is obtained by performing a spinal tap, in which a needle is inserted into an area in the lower back where fluid in the spinal canal is readily accessible. Identification of the type of bacteria responsible is important for selection of correct antibiotics. Bacterial meningitis can be treated with a number of effective antibiotics. It is important, however, that treatment be started early in the course of the disease. Appropriate antibiotic treatment of most common types of bacterial meningitis should reduce the risk of dying from meningitis to below 15although the risk is higher among the elderly. Yes, some forms are bacterial meningitis are contagious. The bacteria are spread through the exchange of respiratory and throat secretions (i.e., coughing, kissing). Fortunately, none of the bacteria that cause meningitis are as contagious as things like the common cold or the flu, and they are not spread by casual contact or by simply breathing the air where a person with meningitis has been.

This happened on Wednesday night December 14th:
We had a big scare with Morgan last night they did not think she would make it through the night, but they weren't sure what was going on. They did an emergency CT SCAN to find out what was going on because her eyes were not pointing straight and she did not know who anyone (including her dad) was. They raised the pressure up on her shunt and it was not draining properly therefore she was having brain swelling from the fluid building up on her brain. When her daddy picked her up off of her bed the fluid drained within 10 minutes and she was better. She is still confused and she still feels alot of pain, but she was a little better. Thanks for checking and asking about our little Princess Morgan.

The external shunt wasn't draining at the high pressure level so they had to lower the pressure, now it seems to be ok. She is responding to questions from the doctors more, but still feeling alot of pain. They are checking her every hour vitals, having her wiggle her toes, squeeze their fingers and answer questions. Her vitals are good, and this morning she was wanting doughnuts. I found out that the antibiotics are killing the infection in her blood stream so now she needs prayers that it will kill the infection in her brain, and prayers that it hasn't damaged her brain, and prayers that they caught this in time. The doctors still can't say whether or not it has been caught in time. Please keep her in your prayers. I will update again when I get an udpate from Beth, thanks for caring about her.
OK here is the latest on Morgan:

Morgan is doing really really good. She is constantly hungry. Are you ready for the good news?

OK HERE GOES:
She had surgery yesterday for the FULL REMOVAL of her shunt and it went fantastic no issues. They did a cat scan and it showed almost 100% completely normal, her body has rejuvenated and abosorbed the air. She sat up in her bed for the first time all by herself yesterday because she wanted to play cards with her brothers and sister. She might be getting out of the hospital tomorrow morning that will be GREAT.

She is truly a miracle from God.

THANKS!!!!

Morgan has overcome this Streptococcus Meningitis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ear tube placement and beyond
She has also overcome Surgery to place tubes in her ears for all her ear infections she keeps getting...

god isn't through with her yet...
Morgan has overcome cancer in her brain and spine, risky surgeries, nasty treatments, radiation, chemotherapy, tube placement in her ears, and Streptococcus Meningitis in her blood and brain... and yet she has continues even through all the pain, stress, and sickness she has continued to SMILE...
May 2007 Morgan celebrated her 2 years CANCER FREE....remember God isn't through with her yet....

Children with no Hope

2010-01-26T12:47:00.002-08:00

This is a poem that Beth wrote while at St. Jude going through the ordeal you just read about...
Children with No Hope

Meet the children with no hope
The kids at the end of the proverbial rope

Why donï¿½t they just give up some say
Trust me we often wish we could runaway

These children must endure so much pain
The families resources are under great strain

Off, these children and parents rush to a new state
For a specialized treatment for the child before its too late

Families are separated in half
A good day becomes seeing a smile or hearing a laugh

The tears are many the heartaches unending
New children and parents arriving in need of befriending

In despair to each other the parents will cling
As a child earns their angel wings and the heavenly choir does sing

Death lives here there is no doubt
But so do Gods miracles we often rejoice about

We are a community all our own
Where pride, prejudice, and pessimism are not known

Here exists love, caring, faith and working together
Helping each other through the trials we must weather

The children of no hope with a long road ahead
The treatments, the pain, the therapies they dread

All this they do in order to live
Their care dependant on donations other citizens give

These children live for each day to fight
Knowing in the end their God will make things alright

Does that mean every child will survive
No but on that belief we all thrive

With faith we realize it is not our decision to make
It is God who is to choose to heaven who he will take

Through faith these children let God take the lead
And they know it is faith not hope they need

So here are the children with no hope
Gods chosen children with faith full of hope

@Copyright May2005 Elizabeth Fogakoldyke

and then....

2010-01-26T12:47:00.001-08:00

She is adventureous yet beautiful espically in the fashion shows her and Shawna would have, as well as the Princess Pageant at the Lanesville Heritage Weekend Parade in September. In fact September is when things got crazy.
In April Morgan had a siezure in the middle of the night. She was rushed to the children's hospital. A CAT scan and EEG was done, and NOHTING not one thing to point to a cause. They said "don't worry this happens and they're fine". Occassionally when we'd been in the sun all day without sungalsses she would say her head hurt. I'd give her a dose of children's motrin and it was gone. In September, however, Morgan had a migraine. My husband, 9 year old, and I all have migraines. Our doctor said he had a patient 4 years old that had migraines; Morgan was 4 years old. So we decided if she had another one we would take her to the doctor.

This was the first week of September, Morgan started headstart with mixed feelings. She was happy to be a big girl riding the bus to school, yet sad that she was missing her "just mommy and me" quality time. She had a blast being in the princess pageant with her sister Shawna. Her sisters birthday was that weekend and that was what she wanted for a present. So the girls shopped, went to the "beauty parlor", competed in the pageant, and rode on a float in the parade. Of course they rode the four rides with their family! Life was good from a four year old point of view. However on Wednesday September 22nd Morgan had a headache that night. I gave her children's motrin and it was gone. It returned Thursday pm-she recieved the motrin and was fine. My husband and I discussed that she might be getting a bug. Friday she was not in school but home with me. She was fine, active, and happy; however the headache returned again. We discussed lack of naps lately as possible cause and maybe a trip to the doctor on Monday. Saturday was a big play day with friends over. We were at the park playing and she came to me at 4:30pm and said she was tired and had a headache.

She fell asleep in my arms. One and a half hours later she woke up hungry and had a headache. She had motrin, supper, then was happy and playing later; however I noticed one eye closed while she was watching tv. It was "so that she would only see one of everything" she stated. Now the doctor on Monday was a must. Sunday she had a headache 1 hour after waking up. After hours doctor was called and motrin given. The remainder of the afternoon was spent in play, painting rocks, and such...proclaiming that she didnt have a headache or see two of anything.

Monday we went to the doctor. He felt it was a bad migraine too, but the double vision bothered him. We were sent to the children's hospital for an MRI. This is when we were thrown into hell. On September 27th I was told that my baby girl had a brain tumor. The MRI revealed it was the size of a tennis ball. She was immediately admitted to the ICU to prepare for surgery. Dilantin was given to prevent siezures, steroids were given to reduce brain swelling. On September 30th Morgan had her first brain surgery. The tumor was very vascular, it was wrapped around a major artery, as well as pushing on some important areas of the brain.

She could hemmorage and die, have a stroke and die, end up with alot of brain damage, or just be blind and\or paralyzed on the right side of her body. Church members, family, friends, and Dans parents all showed up to wait it out with us. A blood transfusion and 14 1/2 hours later, the doctor announced approximately 80f the tumor removed; but bleeding prevented anymore resection. He stated he "thinks" its the ATRT "atypical teratoid rhabdoid tumor" so we questioned that and he said "we will talk later; its late now". Morgan did great and recovered quickly - PRAISE GOD! of all the dangers, she simply continued to see double and that was it - PRAISE GOD!

A possible second resection to remove the remainder of the tumor, radiation, and chemotherapy were mentioned; however no explanation of ATRT was given. Finally I looked it up on the internet. I was devastated and heartbroken; the ATRT is the worst tumor a child can have. It is technically part of the PNET (primitive neuroectodermal tumors) which are rapid growing and very aggressive. They are hard to treat but not impossible to cure.

It wasnt until three or four years ago that it was discovered the ATRTs lack the 22nd chromosome (so i'm told).
They are genetically identical in everyway except this one deficiet. That "defect" seems to be what makes it highly aggressive and very rapid growing.

It doesnt respond well to treatment especially chemo alone. Radiation seems to be the key to any possibility of killing the tumor. Without radiation its a matter of time; because children 3 and under cant have radiation due to severe neurocognitive effects, their lifespan once detected is 11 months or less.

Whats the symptoms?
Headaches, nausea, vomitting, fatigue, lethargy, and problems with gait (walk). Gastrointestinal viruses, flu, and other viruses can have these first symptoms as well. The gait (walk) problem is the red flag I guess you'd say. Morgan didnt have these only the headache. We were given the 11 months probably less diagnosis from the neurosurgeon . We didnt accept that though.

Thanks to a suggestion from a friend, we began checking out the possibility of St. Jude Children's Research Hospital. An ongoing study in phase III was being conducted there. The neurosurgeon approved the transfer to St. Jude and off we went to Tennessee.

We were able to be at home for 3 days before we lfet for Tennessee. We were at home for my 40th birthday watching Morgan play with the neighbor -
PRAISE GOD FOR SMALL PLEASURES.

The day before we were to depart, we received a phone call from St. Jude "don't bring the kids, Morgan has to have more brain surgery to remove the rest of the tumor". We arrived as planned on Monday afternoon, checked into St. Jude, then checked into Lebanher Children's Hospital Tuesday morning. The surgery took place on October 13th. It was a 5 1/2 hour surgery that ran the same risks plus more in addition the areas of math, speech, and language could be affected. She may not be able to do certain areas of math, and she may not be able to speak, or if she did it would be garbled and unintelligable.

Dr. Sanford one of the top pediactric neurosurgeons in the country and his equally accompolished associate Dr. Boop scrubbed up to work together on Morgan because this was such a difficult and dangerous surgery.

They told us following the surgery that she had lost right peripheral vision in both eyes due to the tumor. This gives her a "field cut" that means she doesn't see the right half of everything she looks at. While we're unsure about the math due to her age, she speaks as well as prior to the surgery - PRAISE GOD! PRAISE GOD! PRAISE GOD! I cant say it enough.

Her recovery from surgery was more difficult this time. They didn't replace the blood loss as it was a smaller amount than the first surgery. Blood was in the spinal fluid causing some symptoms. Even worse, she had big problems swallowing. Her throat was terribly sore, she had a cough, and her gag reflex was very exaggerated.

It was several days before her throat calmed down, but she still couldn't eat because of the gag reflex. Finally she began to get down baby bites. Migraines started on Sunday. On Monday morning she had another one. They discharged us from Lebanher to return to St. Jude.

Tuesday morning met with a headache again, she went to St. Jude hospital and meds were givenby a neurologist to help the migraines triggered by the tumor. Alot of tests were taken and we were discharged the next day.

We returned to the Grizzlies hotel and were back to outpatient status. Morgan loved the suite we had it was like a small house to her.

Everyday we started early and went all day till 5, 6, and sometimes even later. Morgan was "poked", and "prodded", apologies were given for the pain they caused her. She would refuse, beg them not too, and sometimes fight, but I would encourage, insist, and sometimes force her to comply for her own good. Everyday she climbed in that little red wagon to go for treatments that she didn't like because she trusted me.

In 15 days that we were here, 11 of those we were in testing of some sort where we weren't able to eat until supper. One meal a day can take its toll on a small child. Her spirits remained none the less. because she knew at the end of the day we would be off to the cafeteria to pick our food out for supper, and sit at a table Morgan chose herself. Then it was off to the hotel. There we put our jammies on, put a movie in (scooby doo), fixed some snacks, and climbed in bed to snuggle. We would fall asleep snuggled close together..the perfect ending to any day.

Her spirits were dented when they put us in isolation. One of the tests they did that day at the hospital showed that she had MRSA she had picked it up at the Lebanher hospital. We were in isolation from October 24th until the 5th of November. This meant we sat in a seperate area, sat in a room alone, the doctors came to us, then we went back to the hotel (grizzly house).
We couldn't go to the cafeteria, roam the hospital, or the lobby area of the hotel.

Another blow came on October 28th, 2004 when they put her central IV line into her chest. The anesthesia made her sick Thursday and Friday. She wasn't able to keep down her meds for her stomach so the problem continued. November 3rd they put her in the hospital since she hadn't ate food. Her nausea resolved but the disease was now taking its toll on her.

The day after the 2nd surgery a MRI was taken that showed all tumor gone. The MRI on the 20th and spinal tap on the 21st confirmed the tumor was growing and spreading. Four small tumors were forming in the spine, the spine was coated with tumor cells, and there was a tumor growing in the left front of the brain. By Friday November 5th her condition had worsened. She was in extreme pain. Her entire body hurt. She couldn't lay on her back, sit up, and her legs curled up and her head tilted backwards. We were giving her pain shots to help her. She also began having breathing problems on Wednesday night. As as result another MRI was ordered. Results showed the entire brain and spine are coated with tumor cells. The four tumors in her spine continued to grow. There are now 3 new tumors, and the original tumor is growing again. This tumor is in the ventricle which drains out spinal fluid, if it doesn't work, brain swelling continues and it will kill her. There's also the possibility that the breathing problems are a result of brainstem involvement by the tumor which will kill her.

On Monday it was discovered that Morgan is pretty much blind because theres been small hemmorages behind her eyes, again related to the swelling. It was decided to put a shunt in to drain to the outside. If swelling reduces and breathing/heart improve we know we are in better shape. However, if not then the tumor is growing into the brainstem and there's nothing we can do - its a matter of time.

We were sent to Lebanher again for surgery to put in the shunt. Surgery was performed the next day. The shunt is an external one to drain to the ouside due to tumor cells being in the CSF cerebral spinal fluid. The drain enters the upper right area of the brain and then goes under the skin down the skull, neck, and ribs on the back to exit out of the lower ribs. The shunt bag must at all times remain level with her ear to maintain proper drainage not too little or too much. Because of the dangers due to incorrect bag height and high risk of infection, Morgan must stay int he hospital until the shunt can be placed internally. This generally happens after radiation therapy ends. If you're wondering about the tumor cells still being in the fluid yes its possible. You hope their isnt but its possible there are some left that survived and are dormant.

These like the initial cells can then be triggered later and then you have a relapse. In this case ATRT a deadly relapse because radiation is a one time deal and chemo doesnt stop it.

Wait! Stop! I'm moving ahead to much. Right now we just got the shunt to have a chance to complete radiation. Anything farther out than radiation is speculation. In discussing the need for the shunt, I was told that Morgans ATRT is moving extremely rapid. It seems that while ATRT grows fast already, Morgans case seems to even have surpassed its own "average" rate of growth. They aren't sure that radiation will stop her cancer. If the tumors continues to grow during radiation then there is nothing more we can do and its a matter of time. It was speculated that she may not make it through the radiation, but if she did and it was still growing-she wouldn't even live the 6 weeks break between radiation and chemo to return for the chemo treatment. All we can do is pray radiation works to kill the tumor cells.

Her radiation doctor says theres still a chance for Morgan. He said he has seen sick kids like Morgan come in and during radiation begin to improve and "round the corner" and go on to do well. He cant predict if shell be one of those kids it just depends if she responds to treatment. How will I know? Watch her symptoms. If she improves we know its responding to some extint; however if she continues to have problems and/or gets worse we know its not going to respond the way she needs it to. There's a work-up MRI scheduled at the end of November for the final phase of radiation 9 treatments. That might tell us more about the tumor growth then, but for now we just have to watch for symptoms and wait.

Do you know what a nightmare that is to watch for symptoms? Every hour of everyday you wait, watch, and worry. The minute anything shows up you immediately notice, no matter how small, you call the nurse; she observes then calls the doctor, the doctor examines, and tests are done. Results get checked and intervention taken.

If they're not major like failing eyesight, increased heartrate, very low blood pressure then you're left to wonder if this is the beginning of something bigger, a side effect of treatment, or a side effect of the tumor.

A case in point occurred about 3 weeks ago right after she recieved her shunt. That weekend was the weekend we chose to celebrate her 5th birthday. That Friday I was required to move from one room in the grizzly house to another and while moving Morgan received an orange push-up pop by accident. As a result she was unable to have radiation that day. They had stressed to us the absolute importance of not missing any doses during radiation therapy. They want to hit the tumor cells with everything they can (dosage wise) and not let up so that the tumor cells wouldn't have a chance to develop any resistant cells which sometimes occurs. We were worried but they said since it was just one day they weren't going to come in on Saturday they would just let it go.

Things went well on Friday and Saturday; however on Sunday her heartrate began to climb and her oxygen saturation (02sat) began dropping when she was sleeping. Before she would have periods of apnea however even then her O2 sats never dropped below 95 except for a couple of hours the week before when the brain swelling increased requiring the shunt surgery. Then it dropped to 87 to 89 for the short period. This time however she was dropping to 84/85 and we had to give her oxygen while she slept. Monday met with an even higher heart rate, respiration rate, and oxygen while she slept again. She had her radiation on Monday. On Tuesday morning/afternoon her heartrate was 170 resting and awake, and in the 180s if she moved, ate, or used the bedside toilet. She had her radiation that afternoon. Late Tuesday the heart rate slowly began to come down. Over the next few days it continued going down the sats became stronger and oxygen at bed was terminated. On Friday she settled into 130-140s at rest and awake. It can still go the the 150s with activity and stas can still drop to mid 90s but they now accept them as her normal why? Because they did lab work, cultures on the intestinal tract, an EKG, a 24 hour heart monitor, and an echocardiogram and all were normal.

Their conclusion was this high heart rate was because the tumor cells coated the brain stem which controls these involuntary functions. Is this a setback? Does this mean its still growing despite radiation; because when we go three days with out it, she develops symptoms? It improved but, it didn't return to normal. How would you interpret that?

In the 2 weeks that have followed we've had more "interpretations". Her blood pressure ran high, then low, then high from swelling, and now is becoming more normal. Her vision became very blurry and improved to her normal deficiet, then in the last couple of days shes began closing the left eye again. The left side is the worse side, its where the original tumor had started growing back, the reason she started seeing double, and closing the left eye to begin with.

Is she seeing double again? Her face, hands, and legs swelled significantly from the steroids. They gave her a ferocious appetite. Now they are weaning her off these. The swelling is decreasing but now so is her appetite. Over these weeks Morgan was on TPN total parental nutrition in her IV. Her radiation was lat afternoon giving her only one meal a day, after going all day hungry, thirsty, and miserable.

To some hospital personnels disapproval, I switched Morgan to "3rd shift". She stays up till about 4am so that she eats 2 meals and sleeps late the next day so she spends less time hungry and thirsty. It worked and she came off TPN. The steroids kept her intake good. Now, however her intake has dropped to half and shes back on IV fluids because shes not drinking enough. I think the absence of steroids and a sore throat from radiation therapy has caused this problem.

She's disappointed because she just got out of isolation on Thanksgiving day and has rode a tricycle around the last 3 days but now is unable to due to the IV and POLE going with her. Yes that was another problem-isolation. We got out of isolation on Friday the 5th...as we were heading to ICU. We were in an isolated room; however Morgan kept having problems with the catheter she had and various hospital personnel kept working with it to get it to function properly. Four catheters later Morgan went back into isolation on the 11th because she had MRSA, pseudomonas, and another bacteria in her bladder.

She was on two antibiotics for ten days. Afterwards she had to have two negative cultures before she was out of isolation. On Thanksgiving day we received our second negative and for the first time she was able to leave her room. We went to the cafeteria to eat our Thanksgiving meal together as a family - PRAISE GOD!

Another problem we had was with the shunt fluid. In the beginning it was clear, then a week post-op it changed color to a light yellow, no one knew what that meant. Cultures came back negative for bacteria (PRAISE GOD), but we were still baffled as to the cause. Finally we spoke with the neurosurgeon and he stated that it could be due to protein or discarded red blood cells and it was okay. Well one week later her hemoglobin was down to 7 (13 is normal). They said it was related to the radiation killing red blood cells in the bone marrow of the spine. She had to be given blood on just this Monday the 29th, the day of her radiation simulation, CAT SCAN, and MRI.

We were anxious to hear if the tumor was increasing or not. After a few requests her Doctor (Dr. Gajjar) came in on Tuesday evening along with Dr. Sanford the neurosurgeon. It seems he hadn't looked at the MRI yet and said it wasnt a diagnostic MRI, he felt looking at it was unnecessary, because looking at her improvements he felt it was responding to radiation.

He had taken two samples of fluid for testing and they were negative for active tumor cells! They discussed taking a sample from the upper area of the shunt. If this sample showed to be bacteria free then they are going to try to place the shunt inward to drain into the abdomen. They hope to operate on Friday. After that if all goes well Morgan will go outpatient to campus housing to complete her remaining radiation. Finally after one month we'll just come visit the hospital daily for our nap (radiation and recovery) then go back to Grizzly house. We hope to complete radiation and return home to Indiana the week of Christmas providing no setbacks.

Please Please Please continue to pray the radiation kills all the tumor cells. Pray that the psuedomonas that appears to still be in her bladder goes away. Pray that she eats and drinks enough. Pray that she comes home to Indiana for four weeks and stays symptom free and cancer free and returns to St. Jude to complete the chemo phase of her treatment.
Otherwise PRAISE GOD, PRAISE GOD, PRAISE GOD!!

Shout it from the mountain tops; our lord God cares for and loves us. He is a good God. With God all things are possible. With him lies all hope for the future. Let us never forget that we serve a good God.

I may (probably) have left something out, but this is the general account of Morgans Mission Of Life.
Thank you to all who have and continue to pray for her. Thank you to all who have sent cards or presents. I wish I could say there is an accurate list of these wonderful people, however my priority has always been Morgan and the last two months have been a nightmare. I lost track after the first bad diagnosis. Please just know that I am deeply greatful from the bottom of my heart. As for Morgan she loves getting the cards, and all the presents its all great.

Thanks to all of the multiple presents from headstart and others we are able to open a couple each day and continue on what we have affectionately termed
"the neverending birthday"!

I hope that each and everyone of you receive an extra little blessing in the future for the love and kindness you have shown little Morgan and our family. Stay Tuned...GOD'S NOT THROUGH WITH HER YET.
Keep praying please.
Love Little Morgan, Mom (Beth), her dad, 2 brothers, and 2 sisters.
Thank you for visiting the Fogakoldyke family!
*~new information from beth~*
Hello friends, family, acquaintances, as well as others I haven't yet met who are praying for my sweet angel baby Morgan. I want to send a sincere thank you to everyone. So many have done so much, some have given gifts, some have given monetary gifts, yet others have given cards, letters, phone calls, and signed her guestbook(s). Lastly others have given physical help in various ways, emotional support, and a few have even made the trip to visit Morgan and I. I want all of you to know that this helps and especially the prayers prayed for Morgan are appreciated by Morgan and I with all our hearts. No matter how large, small, how important you are, how insignifficant you feel they are (meaning gifts prayers and things) they were all needed by Morgan and her family to "weather" through this terrible storm we are caught in right now. Many have said they wish they could do more, I want those who feel this way to know that they did what they could do and its all you can do. The most important thing you must remember is what you did came from your heart out of love for Morgan which touches my heart in an immeasurable way and you shall be blessed by God for the gift of love you gave Morgan and her family.

While there are many special stories I could share with you that have occurred since September 27th, 2004 a few stand out to me. One is of the children in our church that sent a birthday cd of them, homemade cards from them, two giant poster pictures for her to have of them, and designating one Sunday as Morgan Sunday as well as wearing t-shirts made for Morgan with a message written by Judy Chism (thanks Judy) on them on the day of her brain surgery so everyone would pray for Morgan. The second is of the headstart class in which every child sent at least one present on two different occassions to begin her never ending birthday (with parents and school personnels help) and later sent a photo album with each classmates picture in it for her to keep (she cherishes this gift). Other children have sent gifts and cards through their church group, boy, cub, and girl scouts, and as a member of a school group, classes, and even individually. In fact thank you corydon high school the portable dvd player was priceless. Morgans vision is greatly different between right and left making coloring and crafts difficult and straining on the good eye. Also when she often feels bad and doesn't feel up to doing things, the player occupies her and provides some stimulation equal to her health status. Make no mistake she still loves coloring, paint, markers, stickers, babydolls, and playdoh, clay, crafts, music and barbies. Do you know how hard it is to shop for economical barbie outfits?...even at walmart! Morgan and her sister spend hours playing barbies when she visits. Also we never travel to the hospital, grocery, or anywhere without music, her older brother loaned her his portable cd player to listen to music at the hospital. Lastly the cub scouts, boy scouts, and girl scouts all gave monetary gifts not counting all the personal individual monetary gifts.

The girl scouts Morgans older sister is in (Shawna age 7) is in also got together to make her a blanket. Often a blanket of love from the hearts of several little girls covers Morgan. I learned quickly that you need more then one blanket of love due to bandage seeping, bleeding, emisis, bowel and bladder problems, (related to tumor and treatment) as well as the typical 4/5 year old spills. Her first favorite was a dark blue blanket with a tiger on it from Jeff a co-worker of Paul Barr (thanks Jeff). Then came a special angel blanket (thanks Brenda), a winnie the pooh quilt from St. Jude, the gir scout flowers blanket, the teddybear blanket from church, the kitten prayer blanket from Graceland Baptist Church, the small quilt from Ronald McDonald House, and her purple one from home. She often has a chill that causes her to tremble all over and literally make her teeth chatter, she sleeps with three blankets in a 72degree room; believe it or not she has actually ran out of blankets, of course the hospital has blankets (even warm ones on some units) but its just not complete without one or two of hers for security and comfort. Anyway back to the scouts a friend of mine named Ferre' (I sure hope I spelled that right/probably not i'm sorry) told me a touching story of a little boy in the Lanesville Cub Scouts who took every dime he was saving in his piggybank ($11.00) and gave it to Morgan through scouts. It was his decision not to save it for himself; he was happy to give the money and very proud of his $11.00 donation. As I tell you know I fight back the tears in my eyes to know this child loves my Morgan so much although they haven't met. My prayer is that God will someday allow me to meet all of you (child and adult) who have shared your love with us through prayer and such. I hope that those who read this now will send their picture with their name, city, and state to her to put in her photo album headstart started. She tells me now when she looks at the pictures she has that these are her friends that love her.

Morgan loves to receive mail she tells me several times a day to check the mail just hoping to receive a card, letter, or coloring page. People have sent pages that they colored, their children colored, letters with stickers in the margins, hand drawn flowers, cards of every kind including birthday even though its not her birthday anymore. When she hasn't received mail for a while (you know a week smiles) she becomes sad and says she is lonely especially now since her brothers and sisters can only come every 3 - 4 weeks due to the chemotherapy she is on. Thats when mom pulls out some old cards and we read them; she'll ask why they haven't wrote again and I explain (best I can) they are busy raising their baby girls and boys and doing things like working like daddy. Believe it or not as much as we had to bring for our long term stay, we brought a small bag of old cards for this very reason. There are a zillion stories I could share of other kids, adults, groups, churches, and organizations but I wouldn't possibly have time to write them, which is my reason I have my friend Stephanie Zollman update Morgans webpages (God Bless you Steph). I have been able to get onto Morgans pages a couple of times for 10 minutes in the wee hours of morning while Morgan slept and the nurses weren't busy and could watch her, and I was still awake, now you see why its only been a couple of times. Steph being a great friend put together a book of the websites with the guestbook entries, letters, coloring pages, and even the story of Morgan and stickers that people had sent to her up until the end of January; I read it all to her and she loves it. I am able to write right now because we are in the medicine room on Sunday (less nurse, doctor, associated therapies visiting with Morgan), we are waiting for them to re-type her blood as she does not have her required blood type band on..houdini slipped it off somwhere, platelets and blood can not be given until that is done and shes asleep now with low pain, low nausea, and normal respiration PRAISE GOD! Now the praise God is for the improvements in illness though the sleep thing is in debate. Now I know she needs the sleep, but when its during the day I know the unending night is coming. During her illness 4/5ths of her time has been spent as third shift due to ICUs being noisy around the clock, MRSA and late radiation, and late day scheduled procedures, eating problems and now chemo with its nausea, vincristine pain, drug induced sleep during the day from ativan, benadryl, phenagan, depakote, delauded and more. She goes to sleep at 2:30-4:30 am. Mom still has to get up, get dressed, get her 14 meds and supplies ready to go (they are staggered apart over entire day so she won't vomit them back up) and get her up, cleaned and dressed to go. She will often sleep between and through appointments and infusions due to drugs and late night before. Mom stays awake to talk to doctors, nurses, therapists, and to watch for side effects from the infusions or anything else.

With an average of 5 hours of sleep a night the last two weeks, i'm pretty much done for by the end of the hospital day, she is now ready to social with me, play dolls, make crafts. I want you all to know that I am in hot water with Morgan right now over the chia pet scooby doo head. I promised her I would do it on the weekend to discover until her anc comes up to 2000 two days in a row she will go to the medicine room 7 days a week for an infusion, exams, labs, and anything else needed. Right now her anc is at zero NO IMMUNITY! So anyway i'll soon have to do the scooby head with her but mommas not guaranteeing anything on the plant hair do old scoob will end up with!

If I sound silly its just one of the attributes of sleep deprivation, you know the weight gain and space cadet qualitities! I eat to stay awake since I can't drink coffee, and well the foggy dazed, half asleep brain of mine just heightened the space quality I already possessed that appeared from time to time (no wise cracks from my cheering section please!) Oh yeah I have a financial tip for all of you too; take stock in tylenol and pepcid. The food isn't helping out the ulcer so I broke down and bought pepcid. Between the stress, headaches, sleep deprivation, sleeping on some strange surfaces other than a bed in positions no aging over 40 body should have to do. Tylenot has become my #3 traveling buddy, God is first, and then of course Morgan, I never go anwhere with out it. I'm obviously not the only one either. When a headache or bodyache is spotted by personnel or another parent they are quick to ask you/or offer tylenol. Someone should write a book called My Closest Friend Tylenol." Anyway we all keep truding along some looking worse than others cause they're winging it alone, or their child is critical at that time. We all know this is what we have to doand we put our faith in God that he will get us through these dark times. Besides when you watch what these children go through and the pain they endure you can't possibly even consider giving up. You realize that in this situation that while they may look at you as their hero, the truth is they are your hero. The courage, stamina, positive attitude, and love they have is extraordinary.

Morgan has always been social and loved other kids especially babies, now she holds strange kids hands, smile, hugs, and kisses them, and she is gentle with the babies. She began 2 weeks ago telling other children that she was praying for them as they said goodbye to each other. There is one little girl named Maria that speaks very little english and really doesn't talk much in spanish, she communicates through facial gestures and uses her hands her feelings. Sometimes shes in a wheelchair, she has lung cancer. However Morgan always socials with her, she puts cartoons on for her, sits with her, talks with her, brings her toys to play with, and when Maria doesn't feel like playing (which is most of the time) Morgan entertains her. Is it because she knows Maria is limited physically because her (Morgans) grandmother has bad lungs? Is it because she remembers her sister entertaining her when she was too sick to play? Maybe its because Morgan sees past the physical and sees Marias heart and loves her for who she is inside.

From the stories I have shared with you today, I think we all have alot to learn from children. They have so much innocence about them, they only know unconditional love, and they just believe without question that God is real even though we can't see him and he loves us. They willingly without reservation put their faith in God. Morgan loves to listen to christian music one of her favorite songs is "Above All"; for those of you not familiar the song says "like a rose trampled on the ground he took the fall and thought of me above all (referring to jesus and his crucifixion on the cross). While we were home for christmas between radiation and chemo we were going down the roady one day and out of the blue Morgan asked me "do you know why jesus is like a rose mommy?" I asked her to repeat what she said she replied "do you know why jesus like a rose trampled mommy?" I then realized what she was referring to; her song. I replied "no why honey?" she stated because it was his time to go to heaven. I was surprised yet comforted that in this situation with her life undetermined that should the worst happen, I had nothing to worry about because my child was a child of God and she knew God. In her 5 year old way she understood God and heaven. I would have nothing to worry about even if wicked satan takes my babies body he would never get her sould..that belonged to God already. Please continue to pray for Morgan. She is in her first round of chemo today is her last dose for this round. She received blood Friday and is receiving a higher amount of platelets than ususal. She is getting a little fluids and daily transfusions of the gcfs medicine (Stemcell stimulant to help stemcell growth). She kept down her meds yesterday by staggering them throughout the day and her vomitting decreased. I am having trouble getting houdini to take her tums for calcium and her tablet to treat thrush of the mouth. Everytime I give them to her she takes them out and hides them as soon as i'm not looking, i'm finding these all over the living room, bed, on the floor, and under various furniture pieces! Shes supposed to take 8 tums a day-she really needs the calcium. Shes very weak now and her whole body trembles when she first gets up and has to stand for a minute before she can "wobbly walk" to the bathroom. Of course she doesn't eat or drink enough. We have to watch what she eats and prepare it at home to insure the sanitation of the food, she can only have ice from sterile water not from ice machines. It is nice in that way to be at Target House you have a kitchen to yourself and it has special air filtration system to protect Morgan from airborne germs. She can go limited places for brief times as long as she wears her hepafilter mask, she can even to go St. Jude functions if she wants. She missed the target house valentine dance due to hospitalization. They had mardi gra on the 4th floor because the kids on that floor couldn't leave their floor. She went to the spiderman powered party, but is missing the ice cream social tonight due to transfusion and platelets.

While she does miss alot she did see spiderman and that made up for it all. She got a spiderman t-shirt, small prizes for playing games, a reading book of her choice, a toy (barbie doll of course), a dvd cartoon, pizza (she couldn't eat), and her picture with spiderman (you will notice in her guestbooks he signed her guestbook and so did alot of his friends). In fact she got her picture 3 times with spiderman, multiple hugs, and multiple kisses and was the only child who got to help hand out the pictures to the families as they got their picture with spiderman. She also has graciously agreed to take her picture with 3 or 4 women individually who were helping spidey. Now make no mistake she didn't forget her brothers and sister who had left tearfully Monday evening. Shawna cried to miss the dance, Ethan cried to miss spidey, and Gene just wanted to spend the time as a family like the good ol days. They all cried and so did Morgan and I because we were leaving each other. Anyway she got her sister a book and prize, Ethan got a personally autographed picture of spiderman (she tried to get him a t-shirt but couldn't), and Gene got a couple of books, they will receive those when they come down again. She also got each of them 2 things for $1.00 at dollar tree last night because she loves and misses them. If it was up to her she would be buying things for her friends at church, headstart, and home but mom had to discuss the shortage of money..especially since my purse was stolen on Thursday at walmart when we went to get an inexpensive gift for a friend at St. Jude that had invited Morgan to his birthday party. Not only were we unable to get the gift but we missed the party waiting on the police and filing a report. The policeman who filed the report was very empathetic especially since his wifes purse was stolen twice in six months. There are those people in the world but I will get over it. I'm blessed to have all of you who care for Morgan so much. As I said before please continue to pray for Morgan she is getting magnesium and phosphorous for the tremors now we just need a way to get the calcium supplements down her. Pray that the nausea stays away, the white counts come up quickly, she doesn't get sick, and above all that the CHEMO KILLS TUMOR/CANCER CELLS enough to put it in remission, please pray that she survives and lives long so that she may serve as a living testimony of the love God shows his children and the miracles he can do. Through Morgan God will receive new christians and the faith, love, and hope of current christians will be renewed and strengthened. I testify to you today that my child-Gods child lives today through the miracles that my God the one God-the living God has performed upon her. These things I testify in Jesus name I have seen. To God goes all glory and praise, by his love for his children Morgan lives. God is an awesome God. I am blessed to serve a good God and so be all who serve him in Gods name, Morgans blessings she received and we pray God continues his miracle he has started within her. AMEN!
God bless all of you, again thank you from the bottoms of our hearts with love Morgan and I wish you a good night and God be with you, Beth Fogakoldyke. 2/13

Hello everyone believe it or not its me Beth, I have my handsome almost 14 year old son (April 23rd bday) here with me this week due to March intercession at Lanesville School. Hes watching Morgan so that I could come down the hall to the family resource center. Whenever Gene is around Morgan has him right by her side she loves all of her brothers and sisters and each of them seem to fulfill certain needs she has. Gene provides her with emotional comfort and support. He is her security blanket. Shawna is the other half of "me" (me = morgan) as most of you know they are 2 years apart but act like twins, they wear same size clothes, like the same things, have the same friends, go everywhere together, the only difference is that they don't go to the same school this year because of headstart, but next year they will. Both girls have had difficult times being away from each other, Shawna has broke down several times looking at pictures of her and her sister which caused her to have uncontrollable sobbing (this was the same day Morgan cried missing her sissy which led her into crying herself to sleep). They aren't twins but they act like it. They feel as half of themselves are missing without each other. Together they play as its as magic is there, they smile, they laugh, and they emit a glow or ora that fills you with happiness and lightens your heart. Apart they still play but the glow is missing. The play lacks spontanity, and imagination seems limited. Shawna has stayed a few times here with Morga and it has really helped them re group and go on. For these two its theraputic medicine. The others love her but need to see her periodically as well as Morgan keeps motivated. We've all cried, worried, and continue to do so. That brings me to Ethan. Ethan is always lighthearted, through this however the love for his sister has brought out his compassionate side. When shes not well he has became her physical comfort. He sits, holds, kisses, and snuggles her. He also speaks in a soft gentle voice telling her he loves her reassuring her, encouraging her, comforting her. We didn't know he had such a soft sweet voice when Morgans better feeling he is her comic relief doing and saying silly things to make her smile. No one else can put it there like he can. Basically all the things that use to drive me crazy dont seem so bad anymore. Her oldest sister Cassi hasn't been able to see her as often as the others as she lives with her mom most of the time. However when shes there the girl party starts, fingernail polish, pedicures, manicures, blush, lipstick, and hairstyles and also pretty colognes. Do you know any girl who doesn't wanna feel like a princess especially at 5 years old? You know the pretty feel pretty philospohy. So as you see while mom and dads are important so are the siblings. They are all theraputic medicine for Morgan. Isn't that what families are for supporting eachother in the trials of life? Of course I worry about the other kids because i'm not there to hold them when they cry but i'm glad dad is there. We will all be glad when Morgan gets to come home.

We continue to pray that God heals Morgan so that she will serve as a living testimony to the love our God has for us and the miracles he can perform. Please continue to pray God blesses her with this miracle. Presently she is in the hospital with a 101.3 fever we pray it doesn't go higher. They let her run the fever to let her body temperature tonight however she was achy all over and cried when she had to stand up her knee hurt so bad so we gave her a dose of tylenol. She received her vinicristine chemo yesterday 3/14 and unfortunately it makes her joints and such hurt. Combined with the illness still of uknown cause..ouch! A ton of labs are being done and we await the results. Shes being given three highest antibiotics they have in order to fight this infection whatever it is. Her ancs are zero, she has no immunity so they have to bring out the big guns to fight this and try to keep her safe. Life threatening has a deeper meaning to me now. We will be hospitalized for sure until the fever is gone but it may be longer depending on the results of the labs and what we are dealing with. Shes not eating or drinking well at all and has trouble throwing up some of her meds. She can't take pills as they crush them and give them with cherry syrup, but some of the pills are so bitter she gags and throws up; of course the worse of the antiobiotics. Right now though she is on the big 3 so thats an issue right now. Please pray for Morgan that God cures this illness, she eats, she drinks, keeps her meds down, and the tumors/cancer are has shrunk, and she receives full healing from our lord Jesus christ AMEN.

Thank you all for praying for Morgan one of Gods children and the child he has intrusted to me. Morgan is up now I need to go care for her-have to go. Thank you Stephanie for all you do. Thank you everyone who has sent something/anything to Morgan. She is happy and talks to the cards messages. The other night she said you like me, love me and i like and love you, you are a nice person love Morgan. Needless to say she wants stationary so she can write back to everyone and let them know she loves them too. I'm so blessed to have such a loving child. I didn't realize how high note cards/stationary is, so we will have to wait a bit then work it into our schedule. God Bless.
3/18 Morgan was taken off of one of the three big antibiotics, however they added a different oral antibiotic. I'm not sure when they will start the cipro (another antibiotic) back to her med list either. Her fever has gone and fluids have improved, but shes still not eating and drinking, she only drinks to take her oral meds. Her nausea hit her hard first thing yesterday so they had to give her zofran and benadryl IV in a higher dose to help her. These meds and others make her sleepy so she sleeps all day and is up all night. Ms. Clariol will have a devoted customer with all this gray hair i'm getting. Last night the nutrition struggle ended and they started her on the TPN (total parental nutrition) through her IV. She was still weak and bad looking. Today she seems to feel alittle better her eyes have lightened more, the black on her eyes is now only on the underside of her eyes. Shes incrediably pale but she has a smile now. They will be here tonight to train me on the TPN pump injecting multivitamins into her nutritional fluid. They will wean the transfussion time down this weekend. If all goes well we hope to go home (target house) on Monday on the regular bunch of meds and the TPN IV pole with pump to run over 12-14 hours daily. Please pray for Morgan. Sheila Young i'm thinking of you, MIghty Joe Young, Lucas and Tony. I'll remember to have plenty of supplies at night too. Thanks for the smile i'm wearing right this minute. Thanks everyone for the prayers, email, messages, and cards they really bring a smile to Morgans face.
May Gods love be with you, Beth

Where do I begin.. at the beginning would be best I guess..

2010-01-26T12:44:00.000-08:00

I've thought and thought where to start, and really didn't know where so I will just start at the beginning. In 1998 I was given a medicine that gave me terrible side effects that became life threatening. I was sick and weak and trying to recover. I had miscarried twice with the last miscarriage being February 14th, 1999.

My ob-gyn was following my hormone counts to insure that the miscarriage resolved without a placental tumor forming. The level was down to 10 and the doctor only needed one more blood test to release me. The last test however had increased to 300 in count, so the doctor then prepared us for a placental tumor and surgery. We had to wait til the count reached a certain total then do an ultrasound which would reveal whether it was a tumor or viable pregnancy.

The doctor prepared us for a tumor because of my illness and history of female problems. The day of the ultrasound came and we saw a blinking light which was Morgans heartbeat; it seemed that the last blood test of the miscarriage was the beginning of a new life! Now you may understand why we felt that God meant for us to have Little Morgan.

Before Morgan ever arrived she made her unique character known. Of four children, she was the only one to ever go breech. Morgan was in place on schedule as the other three; however at 8 months she decided to go breech 3 times! Appointments were set and cancelled as she would "flip" back into place. On the third appointment it was kept and she was in place; however as they monitored us for an hour they noticed her heartrate dropping for unexplained reasons. I was induced that day to have her early.

It moved along slowly; however when Morgan decided to come there she was quickly; this caught the nurses off guard. The doctor was 15 minutes away which actually was 30 minutes away. This was 11:25pm.

In an effort to wait for the doctor. the nurses put my legs together then proceeded to cross them to keep Morgan from coming. The doctor arrived, gowned up with lightning speed, and sat down to adjust her stool; as the nurses were putting my legs into position Morgan came. The grandmother stated to the doctor that she better
"catch the baby" because she was coming; and the doctor commented she didnt even have time to adjust her stool.

This was just minutes after 12:00am, making her birthday November 12th instead of the 11th! Morgan was healthy and always has been. Oh sure she had the typical viruses, flu, etc; like any other child nothing out of the ordinary. In fact even those didnt keep her down long; she was the healthiest of 5 kids. Theres a movie called The Halloween Tree which describes a boy named Pipkin and he could run faster, jump higher, than the other kids. The day he was born all the soda pop bottles "fizzed over". That is what my Morgan is like. She is "ALWAYS" smiling.

When Morgan is up she is ready to go on with the day. She lives life 110 percent. She is independent and strong willed. When she sets her mind to something - that is it - she is going to do it. She goes about it confidently, determined, and without fear. Example: She began this spring checking the mailbox you know right at the edge of a main highly traveled road. We were terrified but she reassured us saying "I can dooded it" In fact we forbid her to do it again, telling her we were afraid she would get hit by a car and hurt really badly (her 7 year old sister said "yeah and maybe even killed right mommy". (aren't siblings helpful) Morgan simply replied "I'm not scared - I'll be ok momma cause you know I can dooded it"! She has been especially confident with her abilities since headstart graduation.

For a long time she would say "you know why i can dooded it?" ""because I graduated""! Despite our efforts to prevent her, she would sneak out when you went upstairs for something. We finally reached a compromise on mail retrieval. She would go with mom or dad to check mail. She agrees with this as long as you go when she wants to; otherwise she will go without you!
She even checks the neighbors mail too!

We recently looked her names up in a book of names and they mean: Girl at the seashore, strong willed, friendly, and beautiful. Surprised? Another thing I forgot to mention is her love for water. She was jumping in three feet of water even when she couldn't swim. She plays in the sink in water, and washes the back porch with a scrub brush and LOTS of water.

Morgan and her sister Shawna have "beach days" in winter, where they sit in the bathtub in their bathing suits and play for hours. I could go on for hours but you get the point. Anyone who knows her, knows this beautiful blue eyed, cuppie doll is quite a character.

Roller Coaster

2010-01-26T11:07:00.001-08:00

We have had some tough times.. we were all doing well, then we all got sick. They we were all well again, then we got swine flu. Then yup we were all well again.. but then MORGAN got pneumonia and was in ICU because she had went into septic shock...

We found out she has to have gallbladder removed, a biopsy on her liver, and surgery on her neck, however the neck surgery is the BIGGEST CONCERN because it is very risky and dangerous if she has it and if she dont have it. So she goes on February 4th to have this surgery... so please pray she makes it through just fine.

www.caringbridge.org/visit/miraclemorgan

Morgan is smiling... Morgan is doing ok...

2009-04-08T10:32:00.000-07:00

Morgan is well, she did get a little bug but with the weather and such that is to be expected I would say. She is getting back to being herself now though, so we are very thankful for that. Morgan is happy now but like all kids she has her days. She loves crafts and coloring and anything scooby doo. She loves to make things for others, take pictures, and play with peoples hair. She is really doing great.
Thanks for stopping by.

http://www.caringbridge.org/visit/miraclemorgan

update

2008-10-08T21:10:00.001-07:00

They have moved Morgans MRI from the 13th to the 23rd because Beth does not want her to be sedated because its so hard on her lil body. But on November 6th she will be at St. Jude for her testing that they do, her check up that she gets every 6 months.Beth is waiting to hear from Dr. Gajjar her St. Jude doctor to see if he wants her to have an MRI on the 23rd and then another one on the 6th of November so right now that part is a waiting game... waiting on drs to decide.November 5th through November 9th they will be heading down to the JUDE in Memphis Tennessee. It is because of St. Jude that Morgan has made it this far and we are so very thankful.Morgan is still sleeping alot throughout the day but is also herself a little too.. LIL MISS PERKY!

Her right eye is still having issues but it is moving just not alongside the left one. Her left eye is now back to normal. Its the right eye we are now worried about, but this eye has been the problem one since this all began.The antibiotics killed out the infection and the culture came back all clear so thank God for that part. She is no longer have fevers and her dizzy spells and balance issues have improved as well. She is not fully back to being little miss Morgie but she is trying... We are hoping this is a growth spurt and nothing more serious.Please continue to keep this family in your thoughts and prayers as God is not done with the Princess of Miracles yet..This family has other issues going on as well but that is for personal reasons not going to be placed on here, but please keep them in your prayers.

A MESSAGE FROM BETH:I am so very blessed to have so many people that I have met and have yet to meet that think about and care about my family. You are all like an extended family and we thank you for the love and words of encouragement you all leave on my pages. I feel alot better knowing that there are still people in this crazy world that are good hearted and continue to be that way.We love you all, keep coming back and visiting us anytime.

PLEASE PRAY FOR MORGAN

2008-10-03T05:42:00.000-07:00

Morgan has been sleeping 14-16 hours a day this past week and has had a high temp, however it is back to normal now. Her legs had been bothering her pretty badly and her balance was off. Last night her legs were not hurting her as much as they had been and her balance had improved. She has also been having dizzy spells and her right eye (her eye they have had lots of trouble with since all this began) is staying closed and she is having tracking with the left eye.

On Monday October 13th she will have to be sedated to have an MRI done so we are asking all of Princess Morgans prayer warriors to say a prayer for her.As I get more info I will pass on what I can.

Thanks

Tracking skills, or the ability to control the fine eye movements required to follow a line of print, are especially important in reading. Children with tracking problems will often lose their place, skip or transpose words, and have difficulty comprehending because of their difficulty moving their eyes accurately. Many are forced to use their fingers to follow the line because their eyes can't.When we read, our eyes donâ€™t move smoothly across the line.

Instead, our eyes make a series of jumps and pauses as we read. The small jumps between words or groups of words are called saccades. The brief pause we make while looking at the words is called a fixation. After a fixation, we move our eyes to the next word or group of wordsâ€”another saccade.This very precise coordination of jumps and pauses is controlled by our central and peripheral visual systems.

Our central vision processes what weâ€™re seeing in clear detail and defines what weâ€™re looking at. Our peripheral, or side vision, simultaneously locates surrounding objects and letâ€™s us know where to look. (These two systems are sometimes referred to as the "Where is it?" and "What is it?" systems.) In reading, our central vision processes the word, while our side vision locates the following word and tells us where to aim our eyes next.

The integration of these two systems is what allows us to efficiently move our eyes along a line of print without overshooting or undershooting, or mistakenly aiming our eyes at lines above or below. If there is not continuous, fluid, simultaneous integration between these two systems, reading will be jerky, loss of place will be common, and comprehension will be poor.

Please say a prayer for PRINCESS OF MIRACLES MORGAN

2008-10-02T20:27:00.000-07:00

PLEASE PRAY FOR MORGAN

I do not know all of the details as of yet... but as soon as Beth lets me know I will update again...

Morgan will have to have an MRI on 10/13 with sedation....

PLEASE PRAY FOR NO TUMOR GROWTH, NO CANCER CELLS....

PLEASE PRAY, AND COMMENT

THANKS

links

2008-09-27T21:55:00.002-07:00

http://www.stjude.org
This is the hospital that helped Morgan stay alive...

http://www.caringbridge.org/in/morganfogakoldyke
http://www.caringbridge.org/in/morgan_fogakoldyke
These are additional websites created for me

"REAL"

2008-09-27T21:55:00.001-07:00

I have seen "REAL" faith and "REAL" courage through the eyes of my daughter.
I have seen "REAL" hope and "REAL" miracles happen through my daughters eyes.
I have seen "REAL" fear and "REAL" perseverance through my babygirls eyes.
I have also seen a"REAL" hero turn into a "REAL" princess and that is my little girl.

ear tube placement and beyond...

2008-09-27T21:54:00.000-07:00

ear tube placement and beyond
She has also overcome Surgery to place tubes in her ears for all her ear infections she keeps getting... god isn't through with her yet... Morgan has overcome cancer in her brain and spine, risky surgeries, nasty treatments, radiation, chemotherapy, tube placement in her ears, and Streptococcus Meningitis in her blood and brain... and yet she has continues even through all the pain, stress, and sickness she has continued to SMILE... May 2007 Morgan celebrated her 2 years CANCER FREE....remember God isn't through with her yet....

meningitis and beyond...

2008-09-27T21:53:00.000-07:00

meningitis and beyond
Ok guys we need all the prayers we can have now:
They are running tests to see if her ventricles are dependant on the shunt or not. Her shunt was full of infection, as was her central line. The cultures are showing that nothing else is growing. They increased her pain med, and she is still feeling alot of pain. Her breaths drop down to 8 a minute.
They did an abdominal untrasound/catscan and it showed thankfully no pockets of infection. She is still confused. The antibiotic is working. *On a good note she is eating and drinking* **Beth asks that we all pray hard for Morgan right now, she needs all she can get, and ask that God not be done with Morgan yet**Streptococcus Meningitis is what Morgan has.
They pulled her central line and gave her a sub clavian line and they externalized her shunt, that surgery went well. She is on 3 strong antibiotics for this. She is in alot of pain. She can't turn her head because it hurts. She is also not talking. Please keep her in your prayers she could use all she can get. They are not saying whether or not they have caught this virus in time or not. I will update more as I can.
Thanks for checking on her. God is not through with our Miracle yet.Ok guys we need some prayers again: Morgan is currently at Kosair in ICU. She is having surgery today to have her shunt placed outward. She is tehre because she had a fever and some type of infection well they are now telling me the infection is Bacterial Meningitis (not sure if that is spelled right or not) of the blood and brain.
Here is some info about this: Meningitis is an infection of the fluid of a person's spinal cord and the fluid that surrounds the brain. People sometimes refer to it as spinal meningitis. Meningitis is usually caused by a viral or bacterial infection. Knowing whether meningitis is caused by a virus or bacterium is important because the severity of illness and the treatment differ. Viral meningitis is generally less severe and resolves without specific treatment, while bacterial meningitis can be quite severe and may result in brain damage, hearing loss, or learning disability. For bacterial meningitis, it is also important to know which type of bacteria is causing the meningitis because antibiotics can prevent some types from spreading and infecting other people. High fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years. These symptoms can develop over several hours, or they may take 1 to 2 days.
Other symptoms may include nausea, vomiting, discomfort looking into bright lights, confusion, and sleepiness. In newborns and small infants, the classic symptoms of fever, headache, and neck stiffness may be absent or difficult to detect, and the infant may only appear slow or inactive, or be irritable, have vomiting, or be feeding poorly. As the disease progresses, patients of any age may have seizures. Early diagnosis and treatment are very important. If symptoms occur, the patient should see a doctor immediately. The diagnosis is usually made by growing bacteria from a sample of spinal fluid.
The spinal fluid is obtained by performing a spinal tap, in which a needle is inserted into an area in the lower back where fluid in the spinal canal is readily accessible. Identification of the type of bacteria responsible is important for selection of correct antibiotics. Bacterial meningitis can be treated with a number of effective antibiotics. It is important, however, that treatment be started early in the course of the disease. Appropriate antibiotic treatment of most common types of bacterial meningitis should reduce the risk of dying from meningitis to below 15although the risk is higher among the elderly.
Yes, some forms are bacterial meningitis are contagious. The bacteria are spread through the exchange of respiratory and throat secretions (i.e., coughing, kissing). Fortunately, none of the bacteria that cause meningitis are as contagious as things like the common cold or the flu, and they are not spread by casual contact or by simply breathing the air where a person with meningitis has been.This happened on Wednesday night December 14th:We had a big scare with Morgan last night they did not think she would make it through the night, but they weren't sure what was going on.
They did an emergency CT SCAN to find out what was going on because her eyes were not pointing straight and she did not know who anyone (including her dad) was. They raised the pressure up on her shunt and it was not draining properly therefore she was having brain swelling from the fluid building up on her brain. When her daddy picked her up off of her bed the fluid drained within 10 minutes and she was better. She is still confused and she still feels alot of pain, but she was a little better.
Thanks for checking and asking about our little Princess Morgan.The external shunt wasn't draining at the high pressure level so they had to lower the pressure, now it seems to be ok. She is responding to questions from the doctors more, but still feeling alot of pain. They are checking her every hour vitals, having her wiggle her toes, squeeze their fingers and answer questions. Her vitals are good, and this morning she was wanting doughnuts. I found out that the antibiotics are killing the infection in her blood stream so now she needs prayers that it will kill the infection in her brain, and prayers that it hasn't damaged her brain, and prayers that they caught this in time. The doctors still can't say whether or not it has been caught in time.
Please keep her in your prayers. I will update again when I get an udpate from Beth, thanks for caring about her. OK here is the latest on Morgan:Morgan is doing really really good. She is constantly hungry. Are you ready for the good news?OK HERE GOES:She had surgery yesterday for the FULL REMOVAL of her shunt and it went fantastic no issues. They did a cat scan and it showed almost 100% completely normal, her body has rejuvenated and abosorbed the air. She sat up in her bed for the first time all by herself yesterday because she wanted to play cards with her brothers and sister. She might be getting out of the hospital tomorrow morning that will be GREAT. She is truly a miracle from God.THANKS!!!!Morgan has overcome this Streptococcus Meningitis

Children with no Hope...

2008-09-27T21:50:00.000-07:00

Children with No Hope
Meet the children with no hope
The kids at the end of the proverbial rope
Why don’t they just give up some say
Trust me we often wish we could runaway
These children must endure so much pain
The families resources are under great strainOff, these children and parents rush to a new state
For a specialized treatment for the child before its too late
Families are separated in half
A good day becomes seeing a smile or hearing a laugh
The tears are many the heartaches unending
New children and parents arriving in need of befriending
In despair to each other the parents will cling
As a child earns their angel wings and the heavenly choir does sing
Death lives here there is no doubtBut so do Gods miracles we often rejoice about
We are a community all our own
Where pride, prejudice, and pessimism are not known
Here exists love, caring, faith and working together
Helping each other through the trials we must weather
The children of no hope with a long road ahead
The treatments, the pain, the therapies they dreadAll this they do in order to live
Their care dependant on donations other citizens give
These children live for each day to fightKnowing in the end their God will make things alright
Does that mean every child will survive No but on that belief we all thrive
With faith we realize it is not our decision to make
It is God who is to choose to heaven who he will take
Through faith these children let God take the lead
And they know it is faith not hope they need
So here are the children with no hope
Gods chosen children with faith full of hope
@Copyright May2005 Elizabeth Fogakoldyke

Hello its me...

2008-09-27T21:46:00.000-07:00

Hello everyone believe it or not its me Beth, I have my handsome almost 14 year old son (April 23rd bday) here with me this week due to March intercession at Lanesville School. Hes watching Morgan so that I could come down the hall to the family resource center. Whenever Gene is around Morgan has him right by her side she loves all of her brothers and sisters and each of them seem to fulfill certain needs she has. Gene provides her with emotional comfort and support. He is her security blanket. Shawna is the other half of "me" (me = morgan) as most of you know they are 2 years apart but act like twins, they wear same size clothes, like the same things, have the same friends, go everywhere together, the only difference is that they don't go to the same school this year because of headstart, but next year they will. Both girls have had difficult times being away from each other, Shawna has broke down several times looking at pictures of her and her sister which caused her to have uncontrollable sobbing (this was the same day Morgan cried missing her sissy which led her into crying herself to sleep). They aren't twins but they act like it.
They feel as half of themselves are missing without each other. Together they play as its as magic is there, they smile, they laugh, and they emit a glow or ora that fills you with happiness and lightens your heart. Apart they still play but the glow is missing. The play lacks spontanity, and imagination seems limited. Shawna has stayed a few times here with Morga and it has really helped them re group and go on. For these two its theraputic medicine. The others love her but need to see her periodically as well as Morgan keeps motivated. We've all cried, worried, and continue to do so. That brings me to Ethan. Ethan is always lighthearted, through this however the love for his sister has brought out his compassionate side. When shes not well he has became her physical comfort. He sits, holds, kisses, and snuggles her.
He also speaks in a soft gentle voice telling her he loves her reassuring her, encouraging her, comforting her. We didn't know he had such a soft sweet voice when Morgans better feeling he is her comic relief doing and saying silly things to make her smile. No one else can put it there like he can. Basically all the things that use to drive me crazy dont seem so bad anymore. Her oldest sister Cassi hasn't been able to see her as often as the others as she lives with her mom most of the time. However when shes there the girl party starts, fingernail polish, pedicures, manicures, blush, lipstick, and hairstyles and also pretty colognes. Do you know any girl who doesn't wanna feel like a princess especially at 5 years old? You know the pretty feel pretty philospohy. So as you see while mom and dads are important so are the siblings.
They are all theraputic medicine for Morgan. Isn't that what families are for supporting eachother in the trials of life? Of course I worry about the other kids because i'm not there to hold them when they cry but i'm glad dad is there. We will all be glad when Morgan gets to come home. We continue to pray that God heals Morgan so that she will serve as a living testimony to the love our God has for us and the miracles he can perform. Please continue to pray God blesses her with this miracle. Presently she is in the hospital with a 101.3 fever we pray it doesn't go higher. They let her run the fever to let her body temperature tonight however she was achy all over and cried when she had to stand up her knee hurt so bad so we gave her a dose of tylenol. She received her vinicristine chemo yesterday 3/14 and unfortunately it makes her joints and such hurt. Combined with the illness still of uknown cause..ouch! A ton of labs are being done and we await the results. Shes being given three highest antibiotics they have in order to fight this infection whatever it is. Her ancs are zero, she has no immunity so they have to bring out the big guns to fight this and try to keep her safe.
Life threatening has a deeper meaning to me now. We will be hospitalized for sure until the fever is gone but it may be longer depending on the results of the labs and what we are dealing with. Shes not eating or drinking well at all and has trouble throwing up some of her meds. She can't take pills as they crush them and give them with cherry syrup, but some of the pills are so bitter she gags and throws up; of course the worse of the antiobiotics. Right now though she is on the big 3 so thats an issue right now. Please pray for Morgan that God cures this illness, she eats, she drinks, keeps her meds down, and the tumors/cancer are has shrunk, and she receives full healing from our lord Jesus christ AMEN.Thank you all for praying for Morgan one of Gods children and the child he has intrusted to me.
Morgan is up now I need to go care for her-have to go. Thank you Stephanie for all you do. Thank you everyone who has sent something/anything to Morgan. She is happy and talks to the cards messages. The other night she said you like me, love me and i like and love you, you are a nice person love Morgan. Needless to say she wants stationary so she can write back to everyone and let them know she loves them too. I'm so blessed to have such a loving child. I didn't realize how high note cards/stationary is, so we will have to wait a bit then work it into our schedule. God Bless.3/18 Morgan was taken off of one of the three big antibiotics, however they added a different oral antibiotic. I'm not sure when they will start the cipro (another antibiotic) back to her med list either. Her fever has gone and fluids have improved, but shes still not eating and drinking, she only drinks to take her oral meds. Her nausea hit her hard first thing yesterday so they had to give her zofran and benadryl IV in a higher dose to help her.
These meds and others make her sleepy so she sleeps all day and is up all night. Ms. Clariol will have a devoted customer with all this gray hair i'm getting. Last night the nutrition struggle ended and they started her on the TPN (total parental nutrition) through her IV. She was still weak and bad looking. Today she seems to feel alittle better her eyes have lightened more, the black on her eyes is now only on the underside of her eyes. Shes incrediably pale but she has a smile now. They will be here tonight to train me on the TPN pump injecting multivitamins into her nutritional fluid.
They will wean the transfussion time down this weekend. If all goes well we hope to go home (target house) on Monday on the regular bunch of meds and the TPN IV pole with pump to run over 12-14 hours daily. Please pray for Morgan. Sheila Young i'm thinking of you, MIghty Joe Young, Lucas and Tony. I'll remember to have plenty of supplies at night too. Thanks for the smile i'm wearing right this minute. Thanks everyone for the prayers, email, messages, and cards they really bring a smile to Morgans face.May Gods love be with you, Beth

and on...

2008-09-27T21:44:00.000-07:00

Please Please Please continue to pray the radiation kills all the tumor cells. Pray that the psuedomonas that appears to still be in her bladder goes away. Pray that she eats and drinks enough. Pray that she comes home to Indiana for four weeks and stays symptom free and cancer free and returns to St. Jude to complete the chemo phase of her treatment.Otherwise PRAISE GOD, PRAISE GOD, PRAISE GOD!!Shout it from the mountain tops; our lord God cares for and loves us. He is a good God. With God all things are possible. With him lies all hope for the future. Let us never forget that we serve a good God.I may (probably) have left something out, but this is the general account of Morgans Mission Of Life.Thank you to all who have and continue to pray for her. Thank you to all who have sent cards or presents.
I wish I could say there is an accurate list of these wonderful people, however my priority has always been Morgan and the last two months have been a nightmare. I lost track after the first bad diagnosis. Please just know that I am deeply greatful from the bottom of my heart. As for Morgan she loves getting the cards, and all the presents its all great. Thanks to all of the multiple presents from headstart and others we are able to open a couple each day and continue on what we have affectionately termed "the neverending birthday"!I hope that each and everyone of you receive an extra little blessing in the future for the love and kindness you have shown little Morgan and our family. Stay Tuned...GOD'S NOT THROUGH WITH HER YET.
Keep praying please.Love Little Morgan, Mom (Beth), her dad, 2 brothers, and 2 sisters.Thank you for visiting the Fogakoldyke family! *~new information from beth~*Hello friends, family, acquaintances, as well as others I haven't yet met who are praying for my sweet angel baby Morgan. I want to send a sincere thank you to everyone. So many have done so much, some have given gifts, some have given monetary gifts, yet others have given cards, letters, phone calls, and signed her guestbook(s). Lastly others have given physical help in various ways, emotional support, and a few have even made the trip to visit Morgan and I. I want all of you to know that this helps and especially the prayers prayed for Morgan are appreciated by Morgan and I with all our hearts.
No matter how large, small, how important you are, how insignifficant you feel they are (meaning gifts prayers and things) they were all needed by Morgan and her family to "weather" through this terrible storm we are caught in right now. Many have said they wish they could do more, I want those who feel this way to know that they did what they could do and its all you can do. The most important thing you must remember is what you did came from your heart out of love for Morgan which touches my heart in an immeasurable way and you shall be blessed by God for the gift of love you gave Morgan and her family.While there are many special stories I could share with you that have occurred since September 27th, 2004 a few stand out to me.
One is of the children in our church that sent a birthday cd of them, homemade cards from them, two giant poster pictures for her to have of them, and designating one Sunday as Morgan Sunday as well as wearing t-shirts made for Morgan with a message written by Judy Chism (thanks Judy) on them on the day of her brain surgery so everyone would pray for Morgan.
The second is of the headstart class in which every child sent at least one present on two different occassions to begin her never ending birthday (with parents and school personnels help) and later sent a photo album with each classmates picture in it for her to keep (she cherishes this gift). Other children have sent gifts and cards through their church group, boy, cub, and girl scouts, and as a member of a school group, classes, and even individually. In fact thank you corydon high school the portable dvd player was priceless.
Morgans vision is greatly different between right and left making coloring and crafts difficult and straining on the good eye. Also when she often feels bad and doesn't feel up to doing things, the player occupies her and provides some stimulation equal to her health status. Make no mistake she still loves coloring, paint, markers, stickers, babydolls, and playdoh, clay, crafts, music and barbies.
Do you know how hard it is to shop for economical barbie outfits?...even at walmart! Morgan and her sister spend hours playing barbies when she visits. Also we never travel to the hospital, grocery, or anywhere without music, her older brother loaned her his portable cd player to listen to music at the hospital. Lastly the cub scouts, boy scouts, and girl scouts all gave monetary gifts not counting all the personal individual monetary gifts.The girl scouts Morgans older sister is in (Shawna age 7) is in also got together to make her a blanket. Often a blanket of love from the hearts of several little girls covers Morgan.
I learned quickly that you need more then one blanket of love due to bandage seeping, bleeding, emisis, bowel and bladder problems, (related to tumor and treatment) as well as the typical 4/5 year old spills. Her first favorite was a dark blue blanket with a tiger on it from Jeff a co-worker of Paul Barr (thanks Jeff). Then came a special angel blanket (thanks Brenda), a winnie the pooh quilt from St. Jude, the gir scout flowers blanket, the teddybear blanket from church, the kitten prayer blanket from Graceland Baptist Church, the small quilt from Ronald McDonald House, and her purple one from home. She often has a chill that causes her to tremble all over and literally make her teeth chatter, she sleeps with three blankets in a 72degree room; believe it or not she has actually ran out of blankets, of course the hospital has blankets (even warm ones on some units) but its just not complete without one or two of hers for security and comfort.
Anyway back to the scouts a friend of mine named Ferre' (I sure hope I spelled that right/probably not i'm sorry) told me a touching story of a little boy in the Lanesville Cub Scouts who took every dime he was saving in his piggybank ($11.00) and gave it to Morgan through scouts. It was his decision not to save it for himself; he was happy to give the money and very proud of his $11.00 donation. As I tell you know I fight back the tears in my eyes to know this child loves my Morgan so much although they haven't met. My prayer is that God will someday allow me to meet all of you (child and adult) who have shared your love with us through prayer and such. I hope that those who read this now will send their picture with their name, city, and state to her to put in her photo album headstart started. She tells me now when she looks at the pictures she has that these are her friends that love her.Morgan loves to receive mail she tells me several times a day to check the mail just hoping to receive a card, letter, or coloring page.
People have sent pages that they colored, their children colored, letters with stickers in the margins, hand drawn flowers, cards of every kind including birthday even though its not her birthday anymore. When she hasn't received mail for a while (you know a week smiles) she becomes sad and says she is lonely especially now since her brothers and sisters can only come every 3 - 4 weeks due to the chemotherapy she is on. Thats when mom pulls out some old cards and we read them; she'll ask why they haven't wrote again and I explain (best I can) they are busy raising their baby girls and boys and doing things like working like daddy. Believe it or not as much as we had to bring for our long term stay, we brought a small bag of old cards for this very reason.
There are a zillion stories I could share of other kids, adults, groups, churches, and organizations but I wouldn't possibly have time to write them, which is my reason I have my friend Stephanie Zollman update Morgans webpages (God Bless you Steph). I have been able to get onto Morgans pages a couple of times for 10 minutes in the wee hours of morning while Morgan slept and the nurses weren't busy and could watch her, and I was still awake, now you see why its only been a couple of times. Steph being a great friend put together a book of the websites with the guestbook entries, letters, coloring pages, and even the story of Morgan and stickers that people had sent to her up until the end of January; I read it all to her and she loves it. I am able to write right now because we are in the medicine room on Sunday (less nurse, doctor, associated therapies visiting with Morgan), we are waiting for them to re-type her blood as she does not have her required blood type band on..houdini slipped it off somwhere, platelets and blood can not be given until that is done and shes asleep now with low pain, low nausea, and normal respiration PRAISE GOD! Now the praise God is for the improvements in illness though the sleep thing is in debate. Now I know she needs the sleep, but when its during the day I know the unending night is coming. During her illness 4/5ths of her time has been spent as third shift due to ICUs being noisy around the clock, MRSA and late radiation, and late day scheduled procedures, eating problems and now chemo with its nausea, vincristine pain, drug induced sleep during the day from ativan, benadryl, phenagan, depakote, delauded and more.
She goes to sleep at 2:30-4:30 am. Mom still has to get up, get dressed, get her 14 meds and supplies ready to go (they are staggered apart over entire day so she won't vomit them back up) and get her up, cleaned and dressed to go. She will often sleep between and through appointments and infusions due to drugs and late night before. Mom stays awake to talk to doctors, nurses, therapists, and to watch for side effects from the infusions or anything else. With an average of 5 hours of sleep a night the last two weeks, i'm pretty much done for by the end of the hospital day, she is now ready to social with me, play dolls, make crafts. I want you all to know that I am in hot water with Morgan right now over the chia pet scooby doo head.
I promised her I would do it on the weekend to discover until her anc comes up to 2000 two days in a row she will go to the medicine room 7 days a week for an infusion, exams, labs, and anything else needed. Right now her anc is at zero NO IMMUNITY! So anyway i'll soon have to do the scooby head with her but mommas not guaranteeing anything on the plant hair do old scoob will end up with!If I sound silly its just one of the attributes of sleep deprivation, you know the weight gain and space cadet qualitities!
I eat to stay awake since I can't drink coffee, and well the foggy dazed, half asleep brain of mine just heightened the space quality I already possessed that appeared from time to time (no wise cracks from my cheering section please!) Oh yeah I have a financial tip for all of you too; take stock in tylenol and pepcid. The food isn't helping out the ulcer so I broke down and bought pepcid. Between the stress, headaches, sleep deprivation, sleeping on some strange surfaces other than a bed in positions no aging over 40 body should have to do. Tylenot has become my #3 traveling buddy, God is first, and then of course Morgan, I never go anwhere with out it. I'm obviously not the only one either. When a headache or bodyache is spotted by personnel or another parent they are quick to ask you/or offer tylenol. Someone should write a book called My Closest Friend Tylenol." Anyway we all keep truding along some looking worse than others cause they're winging it alone, or their child is critical at that time.
We all know this is what we have to doand we put our faith in God that he will get us through these dark times. Besides when you watch what these children go through and the pain they endure you can't possibly even consider giving up. You realize that in this situation that while they may look at you as their hero, the truth is they are your hero. The courage, stamina, positive attitude, and love they have is extraordinary. Morgan has always been social and loved other kids especially babies, now she holds strange kids hands, smile, hugs, and kisses them, and she is gentle with the babies. She began 2 weeks ago telling other children that she was praying for them as they said goodbye to each other.
There is one little girl named Maria that speaks very little english and really doesn't talk much in spanish, she communicates through facial gestures and uses her hands her feelings. Sometimes shes in a wheelchair, she has lung cancer. However Morgan always socials with her, she puts cartoons on for her, sits with her, talks with her, brings her toys to play with, and when Maria doesn't feel like playing (which is most of the time) Morgan entertains her. Is it because she knows Maria is limited physically because her (Morgans) grandmother has bad lungs? Is it because she remembers her sister entertaining her when she was too sick to play? Maybe its because Morgan sees past the physical and sees Marias heart and loves her for who she is inside.From the stories I have shared with you today, I think we all have alot to learn from children. They have so much innocence about them, they only know unconditional love, and they just believe without question that God is real even though we can't see him and he loves us.
They willingly without reservation put their faith in God. Morgan loves to listen to christian music one of her favorite songs is "Above All"; for those of you not familiar the song says "like a rose trampled on the ground he took the fall and thought of me above all (referring to jesus and his crucifixion on the cross). While we were home for christmas between radiation and chemo we were going down the roady one day and out of the blue Morgan asked me "do you know why jesus is like a rose mommy?" I asked her to repeat what she said she replied "do you know why jesus like a rose trampled mommy?"
I then realized what she was referring to; her song. I replied "no why honey?" she stated because it was his time to go to heaven. I was surprised yet comforted that in this situation with her life undetermined that should the worst happen, I had nothing to worry about because my child was a child of God and she knew God. In her 5 year old way she understood God and heaven. I would have nothing to worry about even if wicked satan takes my babies body he would never get her sould..that belonged to God already. Please continue to pray for Morgan. She is in her first round of chemo today is her last dose for this round. She received blood Friday and is receiving a higher amount of platelets than ususal. She is getting a little fluids and daily transfusions of the gcfs medicine (Stemcell stimulant to help stemcell growth). She kept down her meds yesterday by staggering them throughout the day and her vomitting decreased.
I am having trouble getting houdini to take her tums for calcium and her tablet to treat thrush of the mouth. Everytime I give them to her she takes them out and hides them as soon as i'm not looking, i'm finding these all over the living room, bed, on the floor, and under various furniture pieces! Shes supposed to take 8 tums a day-she really needs the calcium. Shes very weak now and her whole body trembles when she first gets up and has to stand for a minute before she can "wobbly walk" to the bathroom. Of course she doesn't eat or drink enough. We have to watch what she eats and prepare it at home to insure the sanitation of the food, she can only have ice from sterile water not from ice machines.
It is nice in that way to be at Target House you have a kitchen to yourself and it has special air filtration system to protect Morgan from airborne germs. She can go limited places for brief times as long as she wears her hepafilter mask, she can even to go St. Jude functions if she wants. She missed the target house valentine dance due to hospitalization. They had mardi gra on the 4th floor because the kids on that floor couldn't leave their floor. She went to the spiderman powered party, but is missing the ice cream social tonight due to transfusion and platelets.While she does miss alot she did see spiderman and that made up for it all. She got a spiderman t-shirt, small prizes for playing games, a reading book of her choice, a toy (barbie doll of course), a dvd cartoon, pizza (she couldn't eat), and her picture with spiderman (you will notice in her guestbooks he signed her guestbook and so did alot of his friends).
In fact she got her picture 3 times with spiderman, multiple hugs, and multiple kisses and was the only child who got to help hand out the pictures to the families as they got their picture with spiderman. She also has graciously agreed to take her picture with 3 or 4 women individually who were helping spidey. Now make no mistake she didn't forget her brothers and sister who had left tearfully Monday evening. Shawna cried to miss the dance, Ethan cried to miss spidey, and Gene just wanted to spend the time as a family like the good ol days. They all cried and so did Morgan and I because we were leaving each other.
Anyway she got her sister a book and prize, Ethan got a personally autographed picture of spiderman (she tried to get him a t-shirt but couldn't), and Gene got a couple of books, they will receive those when they come down again. She also got each of them 2 things for $1.00 at dollar tree last night because she loves and misses them. If it was up to her she would be buying things for her friends at church, headstart, and home but mom had to discuss the shortage of money..especially since my purse was stolen on Thursday at walmart when we went to get an inexpensive gift for a friend at St. Jude that had invited Morgan to his birthday party. Not only were we unable to get the gift but we missed the party waiting on the police and filing a report. The policeman who filed the report was very empathetic especially since his wifes purse was stolen twice in six months. There are those people in the world but I will get over it.
I'm blessed to have all of you who care for Morgan so much. As I said before please continue to pray for Morgan she is getting magnesium and phosphorous for the tremors now we just need a way to get the calcium supplements down her. Pray that the nausea stays away, the white counts come up quickly, she doesn't get sick, and above all that the CHEMO KILLS TUMOR/CANCER CELLS enough to put it in remission, please pray that she survives and lives long so that she may serve as a living testimony of the love God shows his children and the miracles he can do. Through Morgan God will receive new christians and the faith, love, and hope of current christians will be renewed and strengthened.
I testify to you today that my child-Gods child lives today through the miracles that my God the one God-the living God has performed upon her. These things I testify in Jesus name I have seen. To God goes all glory and praise, by his love for his children Morgan lives. God is an awesome God. I am blessed to serve a good God and so be all who serve him in Gods name, Morgans blessings she received and we pray God continues his miracle he has started within her. AMEN! God bless all of you, again thank you from the bottoms of our hearts with love Morgan and I wish you a good night and God be with you, Beth Fogakoldyke. 2/13

This hell continues...

2008-09-27T21:42:00.000-07:00

On Monday it was discovered that Morgan is pretty much blind because theres been small hemmorages behind her eyes, again related to the swelling. It was decided to put a shunt in to drain to the outside. If swelling reduces and breathing/heart improve we know we are in better shape. However, if not then the tumor is growing into the brainstem and there's nothing we can do - its a matter of time.We were sent to Lebanher again for surgery to put in the shunt. Surgery was performed the next day.
The shunt is an external one to drain to the ouside due to tumor cells being in the CSF cerebral spinal fluid. The drain enters the upper right area of the brain and then goes under the skin down the skull, neck, and ribs on the back to exit out of the lower ribs. The shunt bag must at all times remain level with her ear to maintain proper drainage not too little or too much. Because of the dangers due to incorrect bag height and high risk of infection, Morgan must stay int he hospital until the shunt can be placed internally. This generally happens after radiation therapy ends. If you're wondering about the tumor cells still being in the fluid yes its possible. You hope their isnt but its possible there are some left that survived and are dormant.These like the initial cells can then be triggered later and then you have a relapse.
In this case ATRT a deadly relapse because radiation is a one time deal and chemo doesnt stop it.Wait! Stop! I'm moving ahead to much. Right now we just got the shunt to have a chance to complete radiation. Anything farther out than radiation is speculation. In discussing the need for the shunt, I was told that Morgans ATRT is moving extremely rapid. It seems that while ATRT grows fast already, Morgans case seems to even have surpassed its own "average" rate of growth. They aren't sure that radiation will stop her cancer. If the tumors continues to grow during radiation then there is nothing more we can do and its a matter of time.
It was speculated that she may not make it through the radiation, but if she did and it was still growing-she wouldn't even live the 6 weeks break between radiation and chemo to return for the chemo treatment. All we can do is pray radiation works to kill the tumor cells. Her radiation doctor says theres still a chance for Morgan. He said he has seen sick kids like Morgan come in and during radiation begin to improve and "round the corner" and go on to do well. He cant predict if shell be one of those kids it just depends if she responds to treatment. How will I know? Watch her symptoms.
If she improves we know its responding to some extint; however if she continues to have problems and/or gets worse we know its not going to respond the way she needs it to. There's a work-up MRI scheduled at the end of November for the final phase of radiation 9 treatments. That might tell us more about the tumor growth then, but for now we just have to watch for symptoms and wait.Do you know what a nightmare that is to watch for symptoms? Every hour of everyday you wait, watch, and worry. The minute anything shows up you immediately notice, no matter how small, you call the nurse; she observes then calls the doctor, the doctor examines, and tests are done. Results get checked and intervention taken.
If they're not major like failing eyesight, increased heartrate, very low blood pressure then you're left to wonder if this is the beginning of something bigger, a side effect of treatment, or a side effect of the tumor. A case in point occurred about 3 weeks ago right after she recieved her shunt. That weekend was the weekend we chose to celebrate her 5th birthday. That Friday I was required to move from one room in the grizzly house to another and while moving Morgan received an orange push-up pop by accident. As a result she was unable to have radiation that day. They had stressed to us the absolute importance of not missing any doses during radiation therapy. They want to hit the tumor cells with everything they can (dosage wise) and not let up so that the tumor cells wouldn't have a chance to develop any resistant cells which sometimes occurs.
We were worried but they said since it was just one day they weren't going to come in on Saturday they would just let it go. Things went well on Friday and Saturday; however on Sunday her heartrate began to climb and her oxygen saturation (02sat) began dropping when she was sleeping. Before she would have periods of apnea however even then her O2 sats never dropped below 95 except for a couple of hours the week before when the brain swelling increased requiring the shunt surgery. Then it dropped to 87 to 89 for the short period. This time however she was dropping to 84/85 and we had to give her oxygen while she slept. Monday met with an even higher heart rate, respiration rate, and oxygen while she slept again. She had her radiation on Monday. On Tuesday morning/afternoon her heartrate was 170 resting and awake, and in the 180s if she moved, ate, or used the bedside toilet. She had her radiation that afternoon. Late Tuesday the heart rate slowly began to come down. Over the next few days it continued going down the sats became stronger and oxygen at bed was terminated. On Friday she settled into 130-140s at rest and awake.
It can still go the the 150s with activity and stas can still drop to mid 90s but they now accept them as her normal why? Because they did lab work, cultures on the intestinal tract, an EKG, a 24 hour heart monitor, and an echocardiogram and all were normal. Their conclusion was this high heart rate was because the tumor cells coated the brain stem which controls these involuntary functions. Is this a setback? Does this mean its still growing despite radiation; because when we go three days with out it, she develops symptoms? It improved but, it didn't return to normal. How would you interpret that?In the 2 weeks that have followed we've had more "interpretations". Her blood pressure ran high, then low, then high from swelling, and now is becoming more normal. Her vision became very blurry and improved to her normal deficiet, then in the last couple of days shes began closing the left eye again. The left side is the worse side, its where the original tumor had started growing back, the reason she started seeing double, and closing the left eye to begin with.Is she seeing double again? Her face, hands, and legs swelled significantly from the steroids.
They gave her a ferocious appetite. Now they are weaning her off these. The swelling is decreasing but now so is her appetite. Over these weeks Morgan was on TPN total parental nutrition in her IV. Her radiation was lat afternoon giving her only one meal a day, after going all day hungry, thirsty, and miserable.To some hospital personnels disapproval, I switched Morgan to "3rd shift". She stays up till about 4am so that she eats 2 meals and sleeps late the next day so she spends less time hungry and thirsty.
It worked and she came off TPN. The steroids kept her intake good. Now, however her intake has dropped to half and shes back on IV fluids because shes not drinking enough. I think the absence of steroids and a sore throat from radiation therapy has caused this problem.She's disappointed because she just got out of isolation on Thanksgiving day and has rode a tricycle around the last 3 days but now is unable to due to the IV and POLE going with her. Yes that was another problem-isolation. We got out of isolation on Friday the 5th...as we were heading to ICU. We were in an isolated room; however Morgan kept having problems with the catheter she had and various hospital personnel kept working with it to get it to function properly. Four catheters later Morgan went back into isolation on the 11th because she had MRSA, pseudomonas, and another bacteria in her bladder.She was on two antibiotics for ten days. Afterwards she had to have two negative cultures before she was out of isolation.
On Thanksgiving day we received our second negative and for the first time she was able to leave her room. We went to the cafeteria to eat our Thanksgiving meal together as a family - PRAISE GOD!Another problem we had was with the shunt fluid. In the beginning it was clear, then a week post-op it changed color to a light yellow, no one knew what that meant. Cultures came back negative for bacteria (PRAISE GOD), but we were still baffled as to the cause. Finally we spoke with the neurosurgeon and he stated that it could be due to protein or discarded red blood cells and it was okay. Well one week later her hemoglobin was down to 7 (13 is normal). They said it was related to the radiation killing red blood cells in the bone marrow of the spine. She had to be given blood on just this Monday the 29th, the day of her radiation simulation, CAT SCAN, and MRI.We were anxious to hear if the tumor was increasing or not.
After a few requests her Doctor (Dr. Gajjar) came in on Tuesday evening along with Dr. Sanford the neurosurgeon. It seems he hadn't looked at the MRI yet and said it wasnt a diagnostic MRI, he felt looking at it was unnecessary, because looking at her improvements he felt it was responding to radiation.He had taken two samples of fluid for testing and they were negative for active tumor cells! They discussed taking a sample from the upper area of the shunt. If this sample showed to be bacteria free then they are going to try to place the shunt inward to drain into the abdomen.
They hope to operate on Friday. After that if all goes well Morgan will go outpatient to campus housing to complete her remaining radiation. Finally after one month we'll just come visit the hospital daily for our nap (radiation and recovery) then go back to Grizzly house. We hope to complete radiation and return home to Indiana the week of Christmas providing no setbacks.

Evil Beast called cancer

2008-09-27T21:39:00.000-07:00

Monday we went to the doctor. He felt it was a bad migraine too, but the double vision bothered him. We were sent to the children's hospital for an MRI. This is when we were thrown into hell. On September 27th I was told that my baby girl had a brain tumor. The MRI revealed it was the size of a tennis ball. She was immediately admitted to the ICU to prepare for surgery. Dilantin was given to prevent siezures, steroids were given to reduce brain swelling. On September 30th Morgan had her first brain surgery. The tumor was very vascular, it was wrapped around a major artery, as well as pushing on some important areas of the brain.She could hemmorage and die, have a stroke and die, end up with alot of brain damage, or just be blind and\or paralyzed on the right side of her body. Church members, family, friends, and Dans parents all showed up to wait it out with us. A blood transfusion and 14 1/2 hours later, the doctor announced approximately 80% 0f the tumor removed; but bleeding prevented anymore resection.
He stated he "thinks" its the ATRT "atypical teratoid rhabdoid tumor" so we questioned that and he said "we will talk later; its late now". Morgan did great and recovered quickly - PRAISE GOD! of all the dangers, she simply continued to see double and that was it - PRAISE GOD!A possible second resection to remove the remainder of the tumor, radiation, and chemotherapy were mentioned; however no explanation of ATRT was given. Finally I looked it up on the internet. I was devastated and heartbroken; the ATRT is the worst tumor a child can have. It is technically part of the PNET (primitive neuroectodermal tumors) which are rapid growing and very aggressive.
They are hard to treat but not impossible to cure.It wasnt until three or four years ago that it was discovered the ATRTs lack the 22nd chromosome (so i'm told).They are genetically identical in everyway except this one deficiet. That "defect" seems to be what makes it highly aggressive and very rapid growing. It doesnt respond well to treatment especially chemo alone. Radiation seems to be the key to any possibility of killing the tumor. Without radiation its a matter of time; because children 3 and under cant have radiation due to severe neurocognitive effects, their lifespan once detected is 11 months or less.Whats the symptoms?Headaches, nausea, vomitting, fatigue, lethargy, and problems with gait (walk). Gastrointestinal viruses, flu, and other viruses can have these first symptoms as well. The gait (walk) problem is the red flag I guess you'd say. Morgan didnt have these only the headache. We were given the 11 months probably less diagnosis from the neurosurgeon . We didnt accept that though.Thanks to a suggestion from a friend, we began checking out the possibility of St. Jude Children's Research Hospital. An ongoing study in phase III was being conducted there. The neurosurgeon approved the transfer to St. Jude and off we went to Tennessee. We were able to be at home for 3 days before we lfet for Tennessee. We were at home for my 40th birthday watching Morgan play with the neighbor - PRAISE GOD FOR SMALL PLEASURES.
The day before we were to depart, we received a phone call from St. Jude "don't bring the kids, Morgan has to have more brain surgery to remove the rest of the tumor". We arrived as planned on Monday afternoon, checked into St. Jude, then checked into Lebanher Children's Hospital Tuesday morning. The surgery took place on October 13th. It was a 5 1/2 hour surgery that ran the same risks plus more in addition the areas of math, speech, and language could be affected. She may not be able to do certain areas of math, and she may not be able to speak, or if she did it would be garbled and unintelligable.Dr. Sanford one of the top pediactric neurosurgeons in the country and his equally accompolished associate Dr. Boop scrubbed up to work together on Morgan because this was such a difficult and dangerous surgery.
They told us following the surgery that she had lost right peripheral vision in both eyes due to the tumor. This gives her a "field cut" that means she doesn't see the right half of everything she looks at. While we're unsure about the math due to her age, she speaks as well as prior to the surgery - PRAISE GOD! PRAISE GOD! PRAISE GOD! I cant say it enough.Her recovery from surgery was more difficult this time. They didn't replace the blood loss as it was a smaller amount than the first surgery. Blood was in the spinal fluid causing some symptoms. Even worse, she had big problems swallowing. Her throat was terribly sore, she had a cough, and her gag reflex was very exaggerated.It was several days before her throat calmed down, but she still couldn't eat because of the gag reflex. Finally she began to get down baby bites.
Migraines started on Sunday. On Monday morning she had another one. They discharged us from Lebanher to return to St. Jude. Tuesday morning met with a headache again, she went to St. Jude hospital and meds were givenby a neurologist to help the migraines triggered by the tumor. Alot of tests were taken and we were discharged the next day.We returned to the Grizzlies hotel and were back to outpatient status. Morgan loved the suite we had it was like a small house to her. Everyday we started early and went all day till 5, 6, and sometimes even later. Morgan was "poked", and "prodded", apologies were given for the pain they caused her. She would refuse, beg them not too, and sometimes fight, but I would encourage, insist, and sometimes force her to comply for her own good. Everyday she climbed in that little red wagon to go for treatments that she didn't like because she trusted me. In 15 days that we were here, 11 of those we were in testing of some sort where we weren't able to eat until supper. One meal a day can take its toll on a small child.
Her spirits remained none the less. because she knew at the end of the day we would be off to the cafeteria to pick our food out for supper, and sit at a table Morgan chose herself. Then it was off to the hotel. There we put our jammies on, put a movie in (scooby doo), fixed some snacks, and climbed in bed to snuggle. We would fall asleep snuggled close together..the perfect ending to any day.Her spirits were dented when they put us in isolation. One of the tests they did that day at the hospital showed that she had MRSA she had picked it up at the Lebanher hospital. We were in isolation from October 24th until the 5th of November. This meant we sat in a seperate area, sat in a room alone, the doctors came to us, then we went back to the hotel (grizzly house). We couldn't go to the cafeteria, roam the hospital, or the lobby area of the hotel. Another blow came on October 28th, 2004 when they put her central IV line into her chest.
The anesthesia made her sick Thursday and Friday. She wasn't able to keep down her meds for her stomach so the problem continued. November 3rd they put her in the hospital since she hadn't ate food. Her nausea resolved but the disease was now taking its toll on her.The day after the 2nd surgery a MRI was taken that showed all tumor gone. The MRI on the 20th and spinal tap on the 21st confirmed the tumor was growing and spreading. Four small tumors were forming in the spine, the spine was coated with tumor cells, and there was a tumor growing in the left front of the brain. By Friday November 5th her condition had worsened. She was in extreme pain. Her entire body hurt. She couldn't lay on her back, sit up, and her legs curled up and her head tilted backwards. We were giving her pain shots to help her.
She also began having breathing problems on Wednesday night. As as result another MRI was ordered. Results showed the entire brain and spine are coated with tumor cells. The four tumors in her spine continued to grow. There are now 3 new tumors, and the original tumor is growing again. This tumor is in the ventricle which drains out spinal fluid, if it doesn't work, brain swelling continues and it will kill her. There's also the possibility that the breathing problems are a result of brainstem involvement by the tumor which will kill her.

And so it began...

2008-09-27T21:37:00.000-07:00

Where to start...

2008-09-27T21:33:00.000-07:00

I've thought and thought where to start, and really didn't know where so I will just start at the beginning. In 1998 I was given a medicine that gave me terrible side effects that became life threatening. I was sick and weak and trying to recover. I had miscarried twice with the last miscarriage being February 14th, 1999.My ob-gyn was following my hormone counts to insure that the miscarriage resolved without a placental tumor forming. The level was down to 10 and the doctor only needed one more blood test to release me. The last test however had increased to 300 in count, so the doctor then prepared us for a placental tumor and surgery. We had to wait til the count reached a certain total then do an ultrasound which would reveal whether it was a tumor or viable pregnancy. The doctor prepared us for a tumor because of my illness and history of female problems. The day of the ultrasound came and we saw a blinking light which was Morgans heartbeat; it seemed that the last blood test of the miscarriage was the beginning of a new life! Now you may understand why we felt that God meant for us to have Little Morgan.
Before Morgan ever arrived she made her unique character known. Of four children, she was the only one to ever go breech. Morgan was in place on schedule as the other three; however at 8 months she decided to go breech 3 times! Appointments were set and cancelled as she would "flip" back into place. On the third appointment it was kept and she was in place; however as they monitored us for an hour they noticed her heartrate dropping for unexplained reasons. I was induced that day to have her early.It moved along slowly; however when Morgan decided to come there she was quickly; this caught the nurses off guard. The doctor was 15 minutes away which actually was 30 minutes away. This was 11:25pm. In an effort to wait for the doctor. the nurses put my legs together then proceeded to cross them to keep Morgan from coming. The doctor arrived, gowned up with lightning speed, and sat down to adjust her stool; as the nurses were putting my legs into position Morgan came.
The grandmother stated to the doctor that she better "catch the baby" because she was coming; and the doctor commented she didnt even have time to adjust her stool.This was just minutes after 12:00am, making her birthday November 12th instead of the 11th! Morgan was healthy and always has been. Oh sure she had the typical viruses, flu, etc; like any other child nothing out of the ordinary. In fact even those didnt keep her down long; she was the healthiest of 5 kids. Theres a movie called The Halloween Tree which describes a boy named Pipkin and he could run faster, jump higher, than the other kids. The day he was born all the soda pop bottles "fizzed over". That is what my Morgan is like. She is "ALWAYS" smiling. When Morgan is up she is ready to go on with the day. She lives life 110 percent. She is independent and strong willed. When she sets her mind to something - that is it - she is going to do it. She goes about it confidently, determined, and without fear. Example: She began this spring checking the mailbox you know right at the edge of a main highly traveled road. We were terrified but she reassured us saying "I can dooded it" In fact we forbid her to do it again, telling her we were afraid she would get hit by a car and hurt really badly (her 7 year old sister said "yeah and maybe even killed right mommy". (aren't siblings helpful) Morgan simply replied "I'm not scared - I'll be ok momma cause you know I can dooded it"! She has been especially confident with her abilities since headstart graduation.For a long time she would say "you know why i can dooded it?" ""because I graduated""! Despite our efforts to prevent her, she would sneak out when you went upstairs for something.
We finally reached a compromise on mail retrieval. She would go with mom or dad to check mail. She agrees with this as long as you go when she wants to; otherwise she will go without you!She even checks the neighbors mail too!We recently looked her names up in a book of names and they mean: Girl at the seashore, strong willed, friendly, and beautiful. Surprised? Another thing I forgot to mention is her love for water. She was jumping in three feet of water even when she couldn't swim. She plays in the sink in water, and washes the back porch with a scrub brush and LOTS of water.Morgan and her sister Shawna have "beach days" in winter, where they sit in the bathtub in their bathing suits and play for hours. I could go on for hours but you get the point. Anyone who knows her, knows this beautiful blue eyed, cuppie doll is quite a character.