The Tumor Part 2

Before you read any further, make sure you go back and read the other posts I've posted, so you're up-to-speed on what happened prior to this post.

June 23^rd, 1980

Today was the first day you were completely off of Decadron.  Mommy was so happy and so were you!  We were hoping and praying this would be the last we’d have to think about the tumor or your problems with breathing.  But, deep down Mommy knew it wasn’t quite over.  She knew God wasn’t done with the tumor.

July 12^th, 1980

You started retracting again.  They were mild ones, but it still made Mommy and Daddy very uneasy.  We decided to take you to the ER again.  Once again, you had to be admitted.  The doctors decided to put you on prednisone, which is also a type of cortisone, but with fewer side effects. 

July 14^th, 1980

We got to go home.  You were given prednisone every other day.  There were some days that mommy had to give you some even though you weren’t supposed to get it.  Mommy and Daddy kept praying that their little girl would be freed from this awful tumor, but they also knew that God’s will would be done.  We loved you so much, but we knew God loved you even more.  It was so hard to see you go through so much pain.  It was hard to understand why God will allow it, but we had to trust He had His reasons.   Maybe it was to make us stronger Christians and draw us closer to Him?  Whatever His reasons were, we tried to remember to thank Him for everything He had given us.  Mommy and Daddy love each other very much and we love you, too.  We have a lot to be thankful for!

September 1980

You are still on prednisone every other day.  There are days that I still need to give it to you every day. 

September 12^th, 1980

You got another cold.  This made you contract a lot more, so Mommy had to give you prednisone six days in a row.

September 21^st, 1980

Your cold was almost gone and you didn’t have to go to the hospital this time!  Praise God that the prednisone is helping you!

Fall 1980

As the days went on, you weren’t getting any better.  Mommy had to keep giving you more and more prednisone, which wasn’t good for you, but it at least helped you breathe.  We decided to change doctors.  The new doctor examined you twice and decided to schedule another bronchoscopy.  You were referred to another doctor for that procedure.  This doctor decided to see what was going on.  If there weren’t any changes with the tumor, he would schedule laser surgery.  A surgery was scheduled for Nov. 11^th, 1980, to make sure something was scheduled in case nothing had changed.  We had to wait three weeks before the bronchoscopy could take place.  It was a really long three weeks!

November 10^th, 1980

Today was bronchoscopy day.  You were admitted to one facility and then afterwards, you would be transferred to another facility.  The bronchoscopy showed that there was no change with the tumor.  Tomorrow you would have surgery.

You shared the first ward with another baby and a six year-old.  Because of your breathing and crying, you later got transferred to a private room, so you wouldn’t disturb the other children.  That night you didn’t sleep well.  You were having a really hard time breathing.  Mommy stayed overnight with you and slept on a cot right next to you.

November 11^th, 1980

Morning came and it was your big day for your laser surgery.  We were so nervous and just wanted it all to end!  At 9:45 a.m., they came to get your for surgery.  It was such a horrible feeling to see our baby being wheeled down the hall.  You were looking all over for us and screaming.  Mommy wanted to grab you and run away!

We waited and waited…  Two hours went by, then three hours.  We started getting nervous because there was still no word about you.  Finally at 1:00, we got word that the surgery went well.  They had done another bronchoscopy and confirmed for a second time that the tumor hadn’t shrunk at all from the cortisone and prednisone.  So, they lasered or burned your tumor.  Afterwards, they put in a tracheotomy, which was a hole in your throat, with a breathing tube through there.  You would be breathing out of that for quite a while. 

After talking to the doctor, we had to wait until you came out of recovery.  We were told it would be about an hour.  An hour and a half had gone by and we started getting worried.  The nurses called up to recovery.  Unfortunately, they told us you needed to stay for another hour.  That was so hard to hear because it seemed like an eternity since we had seen you wheeled away.  We wanted our baby back so bad!

Finally at three or four o’clock, we were told you were being taken to another facility in an ambulance.  We were supposed to meet you there.  When we got to the other facility, you weren’t there!  After an hour of waiting, we were so scared and worried.  We thought something had happened to you.  Finally we were told you were upstairs already in your room.  Somehow they had taken you up there, without letting us know.  We weren’t very happy!

Early that evening, we finally got to see you.  You were in your crib just crying away, without any sound.  Mommy couldn’t stand it and burst out crying.  Mommy was so upset she had to leave the room for a little bit.  While she was out, she wondered why God allowed us to suffer so much on Earth.  Mommy reasoned with herself that at least you weren’t as bad off as some of the others at the hospital.  She thanked God that at least there was something the doctors could do for you.  It was still really hard, though.

Again, we weren’t able to hold you.  You looked so scared!  Mommy wanted to hold you so badly and try to make things a little easier for you.  All Mommy could think about is how hard it probably was for you to understand why we weren’t holding you. 

We stayed with you until the nurses made us leave.  It was so hard to leave you that night!  Going home to an empty crib made the house seem so quiet and lonesome.

November 12^th, 1980

Mommy was there right at 6 a.m.  I was finally able to hold you.  Mommy held you the whole day – she didn’t put you down or leave to eat!  Mommy wanted to let you know that she was going to be there as long as she could.

Throughout the day, the nurses had to come in and suction out your throat.  They had to put a long tube down your trach, which would suction out the secretions of your throat.  This helped you breathe better.  You didn’t like this at all!  You got to the point that you would immediately start crying whenever you saw the nurses.

November 16^th, 1980

The doctors changed your trach down to size 0.  This was a process to help wean you from breathing through your trach.  The plan was to keep moving the trach size down until it finally came out.  You did very well on size 0 and didn’t have trouble breathing. 

November 17^th, 1980

The doctors moved your trach down to size 00.  They wanted to leave it at this size for a day or two before putting a cork on the trach.  This cork would make you breathe on your own.

John 16:33  "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Philippians 4:6  "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."

At the Gate of 2012

At The Gate of the Year

I said to the man who stood at the gate of the year
'Give me a light that I may tread safely into the unknown.'

And he replied,
'Go into the darkness and put your hand into the hand of God
That shall be to you better than light and safer than a known way!'

 - by Minnie Louise Harkins 1875-1957

Jerimiah 29:11  "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."

HAPPY NEW YEAR!

The Tumor

The first entries go back shortly after my birth.  Only 1 ½ months into my life, my parents’ lives were catapulted into uncertainty, fear, anxiety – the unknown, which many times is the darkest of all.  Read carefully, though, because as with all dark times, it was followed by a beautiful sunrise.  I have the privileges of sharing entries from my mom’s journal from April 1980-July 1981:

“The first time you went into the hospital was a Saturday, April 19^th, 1980.  You seemed to have a cold that you caught a few days early.  You were awfully stuffed up it seemed.  The day before which was Friday, we were over to Grandma’s.  She said she thought I had better take you to the ER, which upset me very much.  I knew it was hard for you to breathe, but I didn’t think it was that serious.  I rushed home and asked Daddy.  He said maybe we should wait to see how you would do.

All that night you were awake.  Mommy held you to her chest and she sat up so that you could breathe easier.  The next day you seemed to breathe easier but you were still stuffed up.  So I decided to call the doctor.  He said to try suctioning it out with the blue suction cup, which I did, and then to try a vaporizer.  I had to run up town to buy a vaporizer.  But none of that helped.  By 8:00 that night, your chest was retracting, which means your chest was caving in when you breathed.  So then I knew I needed to get you to the emergency room.  Daddy got all upset and worried.  He brought you upstairs and showed you to your other grandparents (we were living down in the basement with them at the time).  The said we’d better hurry and get you to the ER.  Everyone was very worried.  So we took you to the hospital.  Daddy drove about 90 miles an hour to get you there.  When we got there, they immediately got you into a room and the doctor came to check you over.  They gave you a shot to see if that would open up your lungs.  It didn’t do anything so after a lot of watching and listening to your chest, they decided to keep you overnight.  This was the beginning of our long journey into a nightmare of fear. 

We were taken to the nursery on the 6^th floor at St. Mary’s/Mayo Clinic.    After the nurse had asked us a lot of questions and I had fed you for the night, Daddy and I had to leave.  They wouldn’t let us stay.  It was 11:30 p.m.  You were sleeping when we left.  It was so hard to leave!  Daddy and I had a pretty restless night.

April 20th, 1980

The next day I was at the hospital by 6 a.m. to feed you.  You couldn’t eat very well since it was still hard for you to breathe.  When the crew of doctors came around, they were going to let you go home, but I asked if we could stay another day, because you still weren’t breathing very well.  So they decided to let you stay.  Thank God we did!

By 11:00 that morning, it was very difficult for you to breathe again.  You were gasping and fighting for every breath you took.  They decided to put you into intensive care so that you could be watched more closely.  All day I sat by your side watching you fight for every breath.  You would look up at me with so much fear in your eyes.  I felt so terrible as there was not much I could do for you but sit and rock and cuddle you and try to somewhat comfort you.

At 6:00 p.m. I left that night to go and get Daddy.  When I left, I had this awful feeling something terrible was about to happen.  When we got back, the doctor told us you couldn’t make it on your own.  They would have to intubate you (put a tube threw your mouth and down to your lungs).  This was to help you breath.  They put an IV in your little head and a tube down your nose.  You were given oxygen.  It was very hard for us when we came in and saw you with all those tubes.  It was harder for Daddy, though, since he wasn’t used to that.  Mommy had worked in the hospital as a nurse, so it wasn’t as hard.  But, it still tore at our hearts to see you like that.  When we left that night, we were very upset.  Daddy was crying.  Mommy had had her share of crying throughout the day, too.

April 21^st – 23^rd, 1980

Every day I came to the hospital by 6:00 a.m. and sat by your side until 9:00 p.m.  You couldn’t breastfeed because of the tube so mommy would use the breastpump to keep her milk supply up.

You had the tube put in on April 20^th and got it taken out on the 23^rd.  You had to wait 12 hours before you could eat anything.  You were so hungry!  All we could do was hold you and rock you.  You would cry and cry.  That was a long night!

April 24^th, 1980

Finally morning came and I was able to feed you!  You really ate!  When the doctors came around, you were breathing fine on your own and had kept your food down, so they said we could go home.  Hurray!  Mommy was super excited and Daddy would be glad to have us back home.  

The doctors thought you had just had a bad cold and then when they put the tracheotomy in, your throat swelled.  Since the swelling had gone down and you were breathing better, they sent us home.  All was well and we were on our way home!  We hoped everything was over!  Everything was great until about a week and a half later…

May 12^th, 1980

At supper time I saw you were retracting again.  I told Daddy we’d better take you in again.  Daddy had to milk so I brought your aunt.  We rushed off to the ER again.  Luckily when we got there, we saw the same doctor who had examined you the first time.  He decided due to what happened last time, they had better just keep you overnight.  This was a Monday.  We were admitted to the nursery again.

May 13^th, 1980

You started getting worse again…just like before.  We stayed another night.

May 14^th, 1980

It was Wednesday already.  You started retracting really bad, so they moved you to intensive care.

May 15^th, 1980

You weren’t doing very well, so they decided to do an emergency bronchoscopy (put a tube with a camera down your throat to see what was wrong).  They found a tumor – a strawberry birthmark tumor in your windpipe!  Mommy didn’t want to admit it, but all along she kept thinking to herself that she thought you had a tumor.  Mommy and Daddy shed a lot of tears!  The doctors had to put another tube in to help you breathe.  We’d have to wait until the swelling went down.

When you came back from the operating room, you had the tube down your throat again and you looked so miserable.  You had other tubes all over, so they had to tie your hands and feet down so you wouldn’t move or rip them out.  Whenever you would cry, no sound would come out.  Mommy couldn’t hold or hug you or try to comfort you, because you would want to eat, which would make you cry even more.  All you did was cry and cry, without any sound coming out – it was so hard seeing you like that!

May 17^th, 1980

It was Saturday.  You had to go into isolation, which means anyone who came into the room had to wear a gown and take it off before they left.  This was to prevent germs to anyone else in the hospital.  You had diarrhea really bad, so they thought you had a virus, which might spread to other children.  You bottom was so sore and red.  We had to put lights on it to try to dry the soreness away.  Mommy sat by your side all day.   Daddy wasn’t able to come in much because he had to plant corn on the farm.  The nurses weren’t in all that much.  It was just the two of us, which made for long days.

May 18^th, 1980

Your tube was supposed to stay in until the 19^th, but this morning you decided you had had enough.  While the nurses were weighing you, you pulled it out!  When mommy came that morning, she was surprised to see you without your tube in.  The doctors decided to leave it out and see how you would do without it.  Daddy came and we went to church.  When we came back and you were retracting very violently.  The doctor said they would have to put the tube back in again.  It was at this point that Mommy knew she needed to give all of her fears and worries over to God.  So Mommy prayed right then and there.  She prayed to God and told Him she loved you very much, but she knew He loved you even more.  And whatever His will was, she would accept it.  Mommy still asked that He would make you better.  After praying, mommy’s fears left her.   Even though things were still very scary, Mommy had inner peace within her.  God was in control no matter what!

You gradually kept getting worse and worse.  At 1:00, the doctors said they’d have to put the tube back in.  Mommy kept telling Daddy you were going to be o.k., because God was taking care of you.  Mommy also told the doctors she thought you were going to get better.  Slowly, you started to breathe easier.  By 2:00, you were almost breathing normal! All Mommy could do was keep thanking God!  Throughout the rest of the day, you were fine.  You were also very hungry, which was good.  Unfortunately, Mommy couldn’t feed you until the next day due to all of the tubes and swelling.

May 19^th, 1980

Mommy was there bright and early – she wanted to nurse you so badly!  Mommy couldn’t feed you until the doctor saw you again.  He told mommy to call him when she got there, no matter how early it was.  Finally you were able to nurse – you were so hungry since you hadn’t eaten in 5 days!  Afterwards you felt and looked so much better!  You were even smiling again and mommy and daddy, which made us happy.

May 21^st, 1980

We were able to go home again!  This time, though, you went home on medication.  You were on Decadron, which is a type of cortisone.  The doctors hoped this would shrink the tumor. 

We made it home, but the weeks were challenging.  The first week home you had to take the Decadron every 6 hours.  The second week went down to every 8 hours.  The third week you took it every 12 hours.  Finally, every day after that, you took the Decadron every other day for a week.  Then you didn’t have to take it anymore.  During that month, all you did was cry and cry because the medicine made you so hungry.  All you wanted to do was eat, which was a side-effect of the cortisone.  Mommy and Daddy felt so bad and didn’t want to take you anywhere because all you did was cry. The cortisone made you super chubby – that’s where you got your nickname, Chubbers.

By the fourth week, the doctors started tapering you off the cortisone; otherwise you’d go into withdrawal.  You were almost back to your old self.  You were laughing and cooing just like other babies would do.  What a joy to Mommy and Daddy!

Psalm 139:23  “Search me, God, and know my heart; test me and know my anxious thoughts.”

1 Peter 5:7   “Cast all your anxiety on him because he cares for you.”

The Break of Dawn

 Imagine being completely blind-folded.  Not an ounce of light squeezes through.  All you see is complete darkness.   Worse yet, you’re blind-folded in a foreign country.  You don’t recognize the surroundings or any of the sounds.  You stumble and fall.  You’re completely helpless!  You lay there not knowing which way to turn for days, weeks, maybe even years.  You call out for help, but no one hears you.  Finally, a stranger finds you.   But is He really a stranger or have you heard this voice before?  Very gently the stranger takes off the blindfold.  Instantly you see LIGHT!  Not just any light, but you see the most incredible sunrise you’ve ever seen!

Sometimes life makes us feel as if we’re blindfolded.  We’re down here in this foreign land unable to find our way.  Life’s trials taint our vision with complete darkness.  Painful times can even require major healing afterwards.  During those dark times, you yearn for light.  Some of the most welcoming light comes at the break of dawn.  Isaiah 58:8 “Then your light will break forth like the dawn, and your healing will quickly appear”.  I’ve had the privilege of experiencing this divine light several times...

 This blog is devoted to sharing my story.  My hope and prayer is that through my story, you will be strengthened and encouraged to “fight the good fight” and to keep pushing forward.  Ultimately, I pray my story shifts your eyes upward so you can experience the most breathtaking sunrise you’ve ever seen – the Son of God! Then your healing will quickly appear!

Sunrise

The sun rises and another day turns its face westward with the dawn.
What awaits us as we spy the light, sharing its brightness with each passing minute, casting golden rays upon the newborn day?
It buries the dark, rising, overpowering the night and making yesterdays varying triumphs and failures fade; bringing hope for today.
She renews each piece of earth from horizon to here as I watch;
Field and prairie ablaze with red, yellow and glowing orange.
Twinkling white diamonds of water; ponds, lakes, streams, even mighty oceans rise to glow in the shimmering greatness of gentle rays.
Living things await the coming day, some to rise, some to sleep,
But all know it is a new day, with new choices,
given to us, rising, on the Hand of God.

by Paul  Taken from http://www.poemsonly.com/poems/sunrise.php