April 29, 2010

The Great Physician

Family and Friends.....

Thanks for coming back each week and reading the blog updates and especially for praying for Jedidiah.

After coming home from the hospital last week, Jed spent most of the time with a sick stomach. He threw up more than any other time in the past and just felt plain yucky. He finally started feeling better on Saturday, just in time for his big day! No, not his birthday but it may as well have been!

My hometown hosted an amazing fundraiser for our family. I have thought and thought about what I was going to say about this but words just don't explain the feelings we experienced that day. The fundraiser began at 4pm on Saturday...they had hot dogs/hamburgers, snowcones, tshirts, a silent auction, live music and more! We came around 5:00 to say THANK YOU to everyone and we were totally blown away as we drove up to my old school. Donnie Reid (a family friend) drove Jed up to the fundraiser on his motorcycle and Jed loved it!!!! As he drove up, the crowd started clapping for him and tears started flowing from my eyes. I tried so hard not to cry but the overflowing support and love from everyone was just overwhelming!


As I walked in to thank everyone, I just couldn't believe my eyes! So many people from every part of my life....elementary teachers, high school friends, bible study friends, family, neighbors and more came to show their support and gave so unselfishly to our family. So much hard work went into this fundraiser and I know that our family will never be able to thank everyone enough for all they did for us and continue to do.
The T-shirts were amazing! Kay Hill (a dear friend of ours) printed these shirts at her store and another dear friend Rylee designed them. Kay decided to print all the tshirts in green except for the 5 of us in Jed's family. Jed and Josh received black shirts and the girls and I received pink shirts. We drove by Kay's shop last week on our way to the fundraiser and in her store front window she had set up two black shirts and three pink shirts in the middle surrounded by green shirts. She said this was to symbolize our family and all the friends who are surrounding us in this journey.
Our family stood together and Josh told everyone "THANK YOU" as best as we could.....how can you really thank people with just words? They seem so inadequate in times like this. Josh referenced the help and prayers we have been receiving to the story in Exodus of Moses. How Amalek's army was defeated only because Moses held up his staff in prayer throughout the battle. Whenever Moses held up his hand, Israel prevailed and when he grew weak and lowered his hands, Amaleck prevailed. Two friends, Aaron and Hur stood beside Moses and propped his arms up and in the end, the Israelites were victorious!!! Several times in the past six weeks since Jed's cancer diagnosis, I have felt weak and tired but like Moses, we have had friends at our side, helping us in this battle, holding us up in prayer and supporting us every step of the way. And like Moses, we will be victorious over this cancer!!! We are truly blessed.
Jed and I had Sunday school outside this week. The weather was pretty and he was cranky so I thought some fresh air would make him feel better. We finished our lesson and I was busy cleaning the patio but Jed just sat in the swing and was quiet for a little while. When I look back at this picture, I wonder what his little mind is thinking? He is such a smart little boy and I know that he realizes some things are now different with him and with our family. I know he notices that he is sick more often now and has less energy to run and play.
I also know that he already shows a strong love for the Lord and I think many times he is just sitting still and letting the Lord love on him a bit.
It was just a few minutes later and I looked over to see him napping on the swing! This boy really knows how to rest in the Lord! I need to take lessons from him! =)
Church let out and Josh & the girls were finally home. We sure miss our Aly church family. I am looking forward to the day when we are all together again in church.
Chemo #5 this week started out rough but ended well. Jed is starting to recognize the hospital and as soon as we drive up, he starts begging us to leave. He was in panic mode this week and didn't calm down until they accessed his port and then he fell asleep from pure exhaustion. At one point in the day, Jed was so scared and nervous that Josh took him for a little walk outside the clinic doors. I was talking to GG and her friend and Josh said to me as he was walking out "hey...I've got him". Meaning "you can rest for a second because I've got him, I'm taking care of him". GG said that is just what the Lord is telling us. "Hey...I've got him..I'm taking care of him!" Thanks GG...you always know just what to say and just when to say it. What would this exhausted mother do without you!
Jed woke up this morning and said "that stupid devil is going to make me sick again today!" It wasn't five minutes later that he started throwing up. I guess he has heard Josh say that good things come from the Lord and bad things are from sin and the devil. I told Jed this morning that the bible tells us that God is the "the great physician...which means the best doctor in the world" and even if the devil tried to make us sick, the Lord will make us all better!
This afternoon I overheard Jed playing with Biscuit and I wish I had a recorder. It was precious. He was playing "doctor" and poor biscuit was the patient. Before taking these pictures, I heard him telling Biscuit "it's ok honey...this is an easy day...we are just going to talk". Bless his little heart. When we go to dr appts for consultations or surgery follow ups, there are no needles involved or ports to access so we tell Jed that we are just going for an appt to talk.
He told Biscuit "this is quick and easy...this is your chemo shot...if you get sick, throw up in this red bowl."
He talked and talked to Biscuit about going to the doctor. It was absolutely precious and a couple of times my heart broke as he tried to console Biscuit (who was as you can imagine, trying to get off of the coffee table and away from this doctor!). He was saying "Biscuit...it's ok. Jesus is going to take good care of you" and "Don't you know I'm the great doctor"...I don't think Biscuit cared one bit. He was just like Jedidiah at the drs office.....ready to get down and run! =)
Two different times this week I have caught myself getting ready to brush Jed's hair. As we pulled up to the clinic on Wednesday, I grabbed the wipes and a hairbrush. Two things I always grabbed in the past because he usually had a messy face and messy hair after a ride in the car. I got out of my side of the car and opened up the door to the back seat and instantly it hit me...I didn't need the hairbrush. I do miss his head full of hair and look forward to the day when it can be long and brushed again. Oh, and by the way....I did need the wipees! His face was covered in chocolate "kersey" bars! lol
Again, we are so lifted up by the support and prayers from each of you. We cannot even begin to express how grateful we are to have such a loving group of friends Thank you from the bottom of our hearts.
A few specific prayer requests....
PLEASE PRAY THAT
**Jed continues to tolerate his chemo treatments
**his tummy gets better
**his appetite comes back
**his blood counts stay strong and bad germs stay away!!
**the chemo is doing what it is supposed to do and killing any new cancer cells
“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:17

Posted by Lori Harper at 12:38 PM 41 comments

April 22, 2010

Jedidiah and Jonathan

Hello to all of Jed's prayer warriors!

Again, we have been blessed with a good week! I mentioned in my last post that Jed was starting to lose his beautiful head of hair. We woke up the morning after that post to find almost half of Jed's hair falling out in clumps. It is amazing how fast that process happens! One morning you find tiny little hairs on the pillow and the next morning it is coming out so fast you can't keep it out of his face and mouth. We were planning a trip to the barber shop but I knew that this was not going to be easy (on me) so we decided to cut his hair at home. Right as we were planning on cutting it, I had an idea. I know the Lord gave it to me to make this experience a fun one for Jedidiah. I pulled up a bar stool in our kitchen, tied a towel around Jed and gave him a pair of kids safety scissors and he had a blast playing "barber shop man".
He would pick up his hair and before he could even cut it, it would come out in his hand. I tried to be strong but did have to leave the room a couple of times. With each cut, it became more and more real to me that he was fighting this disease and he would now look more like the sweet children we see every week in clinic. I worried about what he would think when he first looked in the mirror. I had the camera ready but decided that I would not "click" if he didn't like it. I prayed so hard before Josh brought him to the bathroom for the big reveal. He took one look in the mirror, flexed his muscles and said "WOW..I look like a wrestle man now!!" Josh and I laughed through the tears.
We are getting more and more used to his new look. I prayed that the Lord would spare his eyelashes and so far, they are holding on tight!


The weather has been wonderful again this week. I said this before, but I can't imagine going through this in the dead of winter. Jed loves being outside and this is a major part of his day. He is able to run and play and ride his tricycle and then go back inside for naps when he gets tired. It would be so much harder if the weather was cold and he wasn't able to enjoy the back yard play area.
I love this picture....

Jed misses his 'girlfriend' Mazie so much. They have been used to playing together at least once a week for quite sometime and now that Jed is sick, they have been separated. Jed's blood counts were up and Mazie was not sick so we planned a fun hour for them to play at our house. She gave him a new hat that she picked out just for him on her trip. They both played and hugged and held hands the entire time.
Wednesday morning we left home bright and early again for Little Rock. We had another long day in the clinic and it was a rough one this time. Jed's port was causing some problems and the nurses had to stick him three times instead of the normal one time. They were finally able to access his port but had to stick him in the arm as well for more blood, so he wasn't a happy camper. After all the blood was drawn for his counts, we met with the urologist and he was pleased with all of Jed's surgery incisions and said everything was healing well. Dr Stine let us have an hour or so break before checking Jed into the hospital to begin his iv meds so we took him to the play area outside for some fresh air. GG was with us again so she helped carry all of our bags and visited with us while Jed had a blast running and playing and jumping. She rode the elevator back up with us and gave us big hugs and words of encouragement before Jed was checked in for the night.
By this point in the evening we were bordering on exhaustion and ready for a long, hot shower and a room to crash in. We were disappointed to find out that we were sharing a room. Sharing a tiny room. A room that has two beds and two sick kids and two sets of tired parents. Sharing a bathroom. A bathroom that is barely able to hold one set of toothbrushes and towels, much less two sets. Little did I know that this experience was going to be one that I would remember for the rest of my life and one that I wouldn't take back for anything in the world. I praise God for allowing us to share a room this week.
We carried our bags to our tiny side of the room and started settling in. Jed was sooo tired and thankfully he was able to rest a bit.
Who needs a hospital bed when you have Daddy!
As always, we spend a lot of time in prayer over Jedidiah before he gets his chemo. Even more so when he gets his big chemo. I know that the Lord is with us every minute of the day in the hospital because I can feel his presence so many times.
After getting checked in and all the iv meds running, this little room was filled with drs and nurses coming in and out and in and out. It seemed like the door was never shut. There was always a temp to check, blood pressure to get, medicine to administer, iv pumps to fix, meds needing changed, and so on. After things settled down a bit, I popped over from around our little curtain to formally introduce ourselves to our roommates for the night.
"Hi....Jedidiah is going to be rooming with you tonight..what's your name?"
One of the cutest little boys in the world gave a big shy smile. His mom told me his name was Jonathan.
"Jedidiah and Jonathan....two big buddies for the night!!"
And then the conversation began.
You know how it is when you get several women together at a baby shower? It doesn't take long before you hear all the discussions on how long their labor was, how much the baby weighed, how much hair or no hair they had, natural or epidural or C-section....you know what I mean. Well, it's the basically the same way in clinic every week. With each new arrival, the moms talk. We discuss the cancer diagnosis, the staging, the treatments. Everything.
Jonathan's mother said to me.."So what is his diagnosis?" Common question. I told her about Jed's rhabdo and how rare the cancer was but how the Lord had touched him and he was only a stage one and he was doing great now. Then, I in turn said "and Jonathan?"
I wish I could have prepared myself for what was about to follow. She looked me deep in the eyes and in a whispered tone said "He is going to die". I felt like the wind had just been knocked out of me. I covered my mouth with my hands and prayed for the Lord to keep me strong. I never took my eyes off of her. I softly said "what do you mean?" It wasn't that I didn't understand what she said, it was just so hard to comprehend. She then told me the details of his diagnosis that I have chose not to share here for the consideration of their family. I tried sooo hard to stop the tears from flowing as she spoke but it was impossible. I stood for a moment in silence. She then said "but we are still hoping for a miracle". I nodded my head and slowly backed my way to our side of the room and around the privacy curtain and buried my head in the white hospital sheets and cried deeply, trying to be silent so they couldn't hear me. Josh whispered in my ear "just imagine the place that awaits him".
It wasn't long before the room filled with doctors and nurses again. The tvs were turned on, food was delivered to the room, games were being played and for short period of time it was just two families enjoying their two little boys.
Play hour came around so Jed and Jonathan were able to go enjoy some fun activities with their dads. Marisela and I stayed in the rooms to wait for the doctors to make their rounds and visit. We poured our hearts out to each other. It was a wonderful hour and I am so thankful for the time I was able to sit with her. I prayed for the Lord to give me the words to speak but it wasn't needed. It was clear that I didn't need to talk. Just listen. And I did and I was blessed.
She told me about her other two children and how much she missed them. We talked about heaven and God and angels and so many things. She said that so many people have told her that Jonathan looks like an angel. She said she knew that God was going to take him to be among the angels and she was doing her best to prepare. She shared with me that during the day she was normally good but her nights were often sleepless with worry. I told her that I understood and would be praying extra hard for her tonight. I told her the Lord is aware of how weary we get and I often say that I am experiencing the "one set of footprints" moment in my life.
Play hour was over sooner than any of us wanted and back to the beds the boys went. It wasn't long before the events of the day started to catch up with them and they both started getting sleepy. The nurses started Jed's chemo around 9pm and within a few minutes, he was fast asleep. I can't tell you what a blessing that was. Around 11pm the tvs were turned off, the curtains were pulled and other than the lights from the iv poles, the room was dark.
Around midnight, both dads were trying to sleep in the chairs next to the small hospital beds as Marisela and I lay curled up around our little boys. The room was quiet. The boys were sleeping. I was praying. Talking to God about the journey we have been on the last month. The families we have met. The stories we have been told. The miracles we have heard about. The miracle we have experienced. And asking Him for one more. A red sea miracle.
As I lay in bed with my sleeping Jedidiah, chemo entering his body to kill out any cancer cells, I rubbed his little smooth head as I talked to the Lord. I prayed to the one that fed the hungry, walked on water, stopped a storm and raised the dead. I prayed for Jonathan and asked the Lord to show up BIG in his life and make it all to HIS glory. "It's not too late. It's not too late. You can do this if you want, Lord...It's not too late".
I could hear sniffles coming from the other side of the room and I imagine Marisela was praying too. Every now and then, I could hear Jonathan ask her a question. I prayed for comfort to fill our room. I prayed for peace. I prayed for healing. I prayed for mercy. Two mothers, two sons, one room, one Saviour.
I don't know what lies ahead for Jedidiah or Jonathan or anyone else on this earth. I don't even begin to understand why God allows some prayers to be answered and others are not. It's not for us to understand. We just simply call on Him and have faith that He will provide.
Thursday morning Jed finished up his iv meds and after lunch, we were discharged from the hospital. Before leaving, we gathered in our room for prayer. Tears flowed as Josh prayed for these two precious boys. Two families who under normal circumstances would have never met. Now together in a little hospital room on an unimaginable journey....both where God's plan has placed us.
Behold, the eye of the Lord is on those who fear Him, On those who hope in His mercy, To deliver their soul from death, And to keep them alive in famine. Our soul waits for the Lord; He is our help and our shield. For our heart shall rejoice in Him, Because we have trusted in His holy name. Let Your mercy, O Lord, be upon us, Just as we hope in You. Psalm 33:18-22
Thank you all for being faithful in prayer. Please pray that Jed's tummy will be better soon. He has had a rough time since the chemo. He is barely able to keep anything down and that is hard on all of us. Thank you all for being here for us. Please remember to pray for Jonathan and his family. God is hearing our prayers and is forever faithful.
(Josh and I are going to mail Jonathan an Arkansas Razorback shirt soon with his name on the back! We told him we loved him, even if he was a Texas Longhorn!!!LOL)

Posted by Lori Harper at 7:26 PM 36 comments

April 14, 2010

Chemo #3

Hello to you all!

This week has been great. The weather was beautiful all week and Jed was able to spend so much time outside, which he enjoys so much. Some dear friends of ours came over to help put up a fence in our back yard since we will be spending lots of time at home this summer. By help, I mean they did the work and we helped by watching! =) The new back yard play area is now his favorite place to be!

Sunday morning was a little hard. It was sad to only iron three sets of church clothes instead of the usual five. It was hard to watch Josh and the girls pull out of the driveway while Jed and I stayed at home. I just keep reminding myself that it is only for a short time and then we will all be back in church together. As soon as the clock hit 10am, Jed and I started our Sunday school class. Jed said "Mommy, you are a good teacher and Biscuit and I are good Sunday school kids". We studied on David and Goliath. We colored and tried to make a slingshot and gathered rocks like David and sang a couple songs. After we were finished with our "class", Jed dismissed us in prayer and it was so cute because he was holding Biscuit's head down the entire prayer. lol

A couple of side effects that Jed has experienced the most is sensitive emotions and lack of appetite. He gets upset easily and cries (or screams) if something is bothering him. Right now, he refuses to get in the bathtub no matter how many tricks we come up with so I've bathed him in the sink a few times. I told him that he used to take a bath in the sink when he was tiny and he thinks that is funny. He barely ate anything for several days, no matter what we would cook or order for him but he did eat a slice of pizza one night and Lean Cuisine broccoli and chicken the other night! lol His favorite breakfast is scrambled eggs but now he says they taste like dirt!

The other common side effect he is experiencing is lack of energy. He loves to play but he gets so tired. He will say "Daddy, don't you think it's time for your nap?"...then he gets his little blanket and curls up on the couch (or wherever he is at, depending on how tired he is). Then half an hour or so later, he is up and ready to play again.
(I have been cleaning out closets, moving out winter and replacing with summer clothes. Jed helped me and decided this tote was the perfect napping place.)
I think Biscuit enjoys the rest times too! This little dog takes every step Jed takes. They are best buddies!
Todays appt was a long one.....5+ hour wait in the clinic! But like I said last week, we honestly don't mind the wait. We get chemo once a week...every Wednesday. There are several other families also assigned to Wednesday so we usually get to see the same familiar faces each week and boy are we getting attached. My sweet Madison was there again today but she felt awful and I just wanted to hug her the entire time. She did smile (I could see it from behind her little mask) when Jed gave her a stuffed lamb and a gift for her brother at home. Christopher was doing tricks in his wheelchair (he has bone cancer and had one leg amputated..only 9 years old) and Jed was just amazed at him. Next week, Jed wants to ride on the back of his chair while Christopher drives him around! Jackson and Ashlin were both crawling and playing and sharing toys and little Nyla was the ring leader of them all passing out snacks! The same clinic that scared me to death on the first visit with all the little sick kids wearing masks and shiny heads now holds a special place in my week. When we walk in the clinic, it's almost like we are in our own little world where each of us understand the others fears and anxieties and hopes for the future. We all lay our heads down at night with cancer in our thoughts and wake up with it on our minds. I leave the clinic praying for whatever child is sick that day (last week Christopher, this week Madison) and wondering which week it will be Jedidiah. Please pray for all of them. God knows each and every one and loves every single one. I also pray that each family knows Jesus in a personal way. I know that one family does not, as the mother shared a bit with me today. I pray that we see her again next week and the Lord will give me just the right words for her.
One of the highlights of our clinic appts is Ms Glenda. She came again today to visit and play with Jed (even rode the elevator with me to keep Jed entertained) and to do what she does best...encourage! She is so sweet and already like family to us. In fact, Jed now calls her GG. (Granny Glenda) She found my blog, started reading it, fell in love with Jed and now we are in love with her. Isn't is awesome how God works!
After lunch (thanks GG) we were finally called back to get the chemo going but not without a song first! LOL Here he is singing "So what, I'm a rockstar". I had asked him to sing "I am a promise" but when you have a 13 year old sister, sometimes you sing what you hear blasting from their room! The nurses got a big kick out of it.
Time to get started. Weight. Height. Temp. Big Man Muscle Check (blood pressure). What a big boy!
He hates to have his port accessed but today he did so good.

A quick dose of Vincristine through his port and we were ready to roll. I wish you all could hear our sweet nurse singing to Jed during the chemo. They are so good to us! What a blessing it is to have Arkansas Childrens Hospital in our state.
So now we are back home and in germ free mode. I have stocked up on Clorox wipes, bleach, hand sanitizer and lysol spray. If you visit our home, be prepared to be attacked at the door with any or all of the above! LOL With each chemo treatment, his counts drop so we have to be super careful. We are praying that germs will stay away from him and that he will have a great, fever free week at home. Please pray that Jed will not experience any of the painful side effects.

To be completely honest with you all, this morning started out a little tough on me. One of the very first questions I asked Dr Stine while we were overnight in the hospital a couple weeks ago was "when will he lose his hair?". He told us that with this cocktail of strong chemo drugs that is would be about two weeks (which to me meant 14 days and I have been counting down every single day since that night). I would lightly brush his hair and check the comb or back of his shirt a couple times a day. Last night was day 13 and I told Josh before we went to sleep that I was upset about him losing his hair. As usual, he has just the right words to say, but I still went to sleep praying that God would make this as easy as possible on my Mommy heart. Around 4am, Jed woke up and said "Mommy, switch pillows with me..there is hair on mine." My heart sank and I think I almost broke my neck trying to get the lamp turned on. Very few little hairs were on his pillow but I knew then that the process was starting.
I know that hair is just hair, and believe me after seeing all the sweet children in clinic every week, I know how beautiful they are still but I just dread this part of the process.
I took these pics last week, knowing that he would be losing this beautiful head of hair soon.
And look at my sweet baby's eyelashes.
The Lord reminded me this morning that even the very hairs on our head are numbered. He knows how many were on Jed's pillow last night, how many were falling off his head this afternoon and how many he will have tomorrow. He is in total control.
The Lord is good and faithful all of the time. No matter how nervous, stressed, tired or helpless we feel. Jed is and has always been in God's hands and there is no better place for him to be.

“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.” (Psalm 61:1-4)
I love this verse tonight....my God is higher than cancer!

Posted by Lori Harper at 5:15 PM 40 comments

April 8, 2010

Setting our hearts to seek the Lord

We have had a great week! Jed was able to go to church with us on Sunday to celebrate Easter. We are so thankful Dr Stine allowed us to have one more Sunday together in church before our "house arrest" began this week. How perfect that it was Easter Sunday! We woke up super early for our sunrise service at church. We had over 70 in attendance and the weather was beautiful. After our sunrise service, we all enjoyed a huge pancake breakfast in the fellowship hall before our big Easter egg hunt and program. The teens hid the eggs and all the little Sunday school kids had so much fun finding them.

I took lots of pictures, of course! I love this picture because Jedidiah stopped by a tree just long enough to open one of his prize eggs. Looks like he was tickled with the contents because he hugged it and gave a great big smile!

The youth at church did such a wonderful job on the Easter program. Jed sang a special and played his guitar. It was a little emotional for me (and the rest of our church) since it will be his last special for a while. He has sang every.single.Sunday for the last year or more. As soon as he was able to barely pronounce "Jesus loves me", Josh had him singing and playing for the Lord. I did video tape it and will put it on here soon for everyone to enjoy.
Yesterday was a long day! We arrived at Childrens Hospital in Little Rock around 9am. It takes us a little over two hours one way so we were up super early and out the door. Kendall (our middle child) had a yearly eye dr appt. Kendall was born with a rare eye disease called Coloboma. She herself has a healing testimony that I will share in length with my new readers soon! Her eye appt was fast and easy and we walked out with a PERFECT exam again and another appt for next year! Thank you Lord!!!!
Jed's chemo appt was scheduled for 10:30am but as we are quickly learning, a two hour or more wait in the clinic is standard. It's actually fine with me because I get the chance to visit with other parents and Jed has so much fun playing with all the little kids. My little Madison was there again (this time with purple sparkle nails) and she was having so much fun with Jed. After we had waited almost two hours, a sweet lady from North Little Rock came into the waiting room looking for us. She recognized Josh from the pictures here on the blog. She visited with us and shared with us how she found our blog and is one of our biggest prayer warriors! I was so blown away that she took the time out of her day to drive to the hospital to meet us and Jedidiah. She took pictures and visited and shared some of her favorite scriptures. Thank you Ms Glenda!!!!
Jed has handled this round of chemo very well. His taste buds are a little messed up and so many of his favorite foods now taste yucky and make him a little sick to his stomach. Other than that, he is still the same funny and happy Jedidiah that he always has been. Sooo thankful for that! Sometimes as we watch him play and laugh (and get in trouble..lol), we find it so hard to believe that he has cancer.
Jed almost always wakes up happy and lately he wakes up saying "well, the devil is dead and the sun is up!!". A week before our ER visit, our electricity went out early Sunday morning before church. It was hard to have Sunday school in a dark room so instead of the lesson I had prepared for my little ones, we studied on "Jesus is the light" and I referred to Satan as the darkness. Jed hasn't forgot that and talks about that lesson quite often. We told him that Jesus is still awake and in charge, even when the sun goes down. Looking back, I think that lesson was more for me than for him. I am so thankful that God gives us rest and the promise of a new morning.
I just glanced at the calendar and realized that it was one month ago today that we were in Dr Woodward's office in Hot Springs talking about this "mass" that had been found during the night in the ER. What we were assured was 'nothing' turned into rhabdomyosarcoma. A word I could barely pronounce and yet now, one month later, a word that never leaves my thoughts. We had no idea one month ago that our little boy would be fighting a rare and aggressive cancer. I often say in conversation that Jed is battling cancer. Josh hates it when I use that phrase. He says that Jed is NOT battling cancer. The battle is not his or ours. The battle is the Lord's. Josh knows that this story in 2 Chronicles is one of my very favorite of all stories in the bible. When a great multitude came against God’s people, King Jehoshaphat and his people set their hearts to seek the Lord and to fast. The king cried out to God a prayer that most of us have probably prayed at one time in our life. “We have no might against these that come against us, neither do we know what to do; but our eyes are upon you” (20:12). “The Spirit of God came in the midst..saying, Be not afraid nor dismayed…for the battle is not yours, but God’s!!!!
So I am doing my best to let the Lord battle this cancer and trust and believe His promise that in the face of cancer, He is in charge and leading the way. My boss (a very Godly man) has this wrote in his bible...FAITH is the opposite of FEAR. Under that is reads.."Fear knocked at the door, Faith answered, no one was there".
Something I am learning is that having faith means that I turn EVERYTHING into the hands of the Lord. All my fears and anxieties. Not just financial fears or "small fears" in comparison to my 3 year old son's cancer, but ALL fears.
We are trusting him, resting in his promises, rejecting all lies of Satan coming into our mind –BELIEVING that God is going to move heaven and earth to defeat this cancer!
Thank you all for believing with us.

Surely God is my salvation; I will trust and not be afraid. The LORD is my strength and my song; he has become my salvation. - Isaiah 12:2

Posted by Lori Harper at 9:09 AM 22 comments

April 3, 2010

Jed's first Chemo treatment

We began our week with a powerful revival at our church. Our revival date had been set for many months and I think it was perfect timing that the days leading up to our first chemo appt were spent with our church family being lifted up and encouraged. The Lord knew that we would need that going into this.

We packed our overnight bags and left home very early on Wednesday. The girls were at school all day and our dear friend Lisa took care of them while we were gone. We made it to the oncology clinic around 10am and at 2pm we were still in the waiting room. During this 4 hour wait, we met so many families. Some were there for the first time and some have been on this journey for many years.

Jed quickly made friends with two sweet little kids about his size. One little boy was full of life and he and Jed became the best of friends! The other little 'boy' was absolutely precious. Quiet and soft spoken...playing right behind Jed and his new best friend. I kept thinking to myself what a sweet little boy he was. We were playing train tracks together and a piece dropped on the floor. The sweet little 'boy' reached down to pick it up and hand it to me and it was then that I noticed HER sparkle pink nail polish and tiny silver ring. I almost lost it. I felt so bad that I had mistaken this short haired sweet child for a boy. I wondered what she looked like before the cancer. If she had red hair like my Kendall or long blonde hair like Reagon. I hope to see Madison again someday and next time I hope she has long pig tails with big ribbons!

We were finally called back to the clinic room to prepare for our admitting in the hospital. The nurses weighed Jed and measured him and got his port ready to start the iv. Dr Stine then came in with some WONDERFUL news for us. EVERYTHING came back clean on Jed's surgery biopsy!!!! He was amazed. Us, not so much. We know what a GREAT BIG GOD we serve and we know in our hearts that God healed Jed. Dr Stine told us that Rhabdomyosarcoma is one of the most aggressive childhood cancers known to man and 90% of the time, a child is staged at a 3 or 4. In fact, Jed was staged between a 2 and 3 on our first visit and they were waiting on the scans to come back to see if he advanced to a 4. Well Prayer Warriors...we are STAGE ONE!!!!!! This is almost unheard of in the Rhabdo cancer world. This is such a mean, aggressive cancer that normally by the time it is diagnosed, it has spread like wildfire. Dr Stine was under the assumption that Jed's cancer had probably spread to the testicle chord, lymph nodes and possibly into the stomach area. After seeing the results of the biopsy, that was not the case with Jed. THANK YOU JESUS!!!

Dr Stine spent the next hour going over all our treatment options for Jed. We had initially been told that Jed would receive 48 weekly chemo treatments and 3 radiation treatments....standard protocol for Rhabdo patients. Since Jed's cancer had not spread, Dr Stine and the other Rhabdo specialist decided that Jed would be the perfect candidate for the 24 week treatments. The drugs are a bit different and harder than the 48wk treatments, but they feel like this is the best plan for us. The scary thing about Rhabdo is that the cancer cells like to "hide" and even become accustomed to the chemo and then after the chemo is over, they rear their ugly heads again and spread. Please pray that is not the case with Jedidiah. I just keep reminding myself that God doesn't work based on statistics. He works to bring glory to his name!

After we finally decided on the 24wk treatment plan, we signed all the papers and waited while our room was being prepared. We waited. and waited. and waited. We were placed in a room with four beds, with three other families and cancer patients while we waited. Thankfully, by this point in the day Jed was worn out and took a two hour nap. This gave Josh a chance to go to the break room to get us some drinks and snacks. It gave me the chance to visit with some of the families in the room with us. By the time Josh made it back with our snacks, I could barely contain my emotions. One young boy the age of Reagon was in such pain that I could hardly stand to look at him. His parents had just found out that his cancer was back (after remission) and was in his bone marrow. The drs were setting up his bone marrow transplant in San Antonio and they were making plans to move there for the next 5 months. Heartbreaking. Another sweet lady had two children of her own and had just adopted three special needs boys under 5 years old. All three were on feeding tubes with several issues each. Her sweet 8 year old daughter Elizabeth was just diagnosed with cancer. How much can one mother take? It didn't take long talking with her before I knew that her help came from the Lord. He truly is our strong tower, our refuge, our place of shelter in times of storms!!!

Our room was finally ready. We walked the long hallway to the "gold wing" where the patients stay overnight. This was one of the hardest walks yet. At times it feels like this is all a bad dream. We made it to the door and there was his little name. It hit me so hard. I tried not to let it show since I didn't want him to be scared.
The nurse opened the door and right in the center of the room was a great big basket of toys and a balloon from a facebook family who has a daughter fighting the same cancer as Jed. THANK YOU Trinity!!!!! Jed loved his gift and it made our first time in the hospital room so much better.
We didn't start chemo until around 11:30pm. Jed was still going strong and quickly making friends with all the nurses. When it finally came time for chemo, the nurse came in and said "I know about you, Jedidiah!" We were amazed to find out that our nurse's brother had been at our church Sunday and dates one of our church girls. She had been keeping up with Jed on facebook and through her brother. How perfect that she was the one doing Jed's first chemo.
Jed handled his first treatment soooo well!!!! He vomited for about an hour the first night and was a little agitated for about an hour or so and that was it! Our first round of chemo is officially behind us!
He went to sleep around 4:30am and slept till 11am! Josh and I slept about 20 minutes total. lol
One funny thing he did that I don't want to forget.....
Every time Jed needed to go tinkle, the nurses would ask us to have him go in a little jug. This quickly became a game for him. I estimate the jug was used over 30 times since he was being heavily hydrated through an iv to prevent kidney and bladder damage from the chemo. When it was finally bedtime, we put a pullup on him and the nurse placed several cotton balls in his pullup so they could still test the urine. When Jed woke up and I changed his pullup for the last time, holding up a cotton ball I said "look at this Jed...you're turning into a rabbit!" As serious as he could be, he turned and looked at Josh and said "Get me out of this place!!". We laughed sooo hard!
I can't say enough about the doctors and nurses in the oncology unit and the entire staff at Arkansas Childrens Hospital. They are amazing and have gone above and beyond to take care of us and make us feel the best we can in these circumstances.
Jed felt so good after waking up on Thursday that we were able to go to the play area for an hour.
My little coonskin hat boy couldn't wait to paint. As he began, I really didn't pay that much attention to what he was painting until he said "mommy, do you love my rainbow?" What a perfect thing for him to paint. We sometimes feel like we are in a terrible storm but God has promised us that no matter how hard the storm rages, he will never leave us or forsake us. After this storm is over, I know there will be a beautiful rainbow!

Jed is still tolerating the chemo well and has very little side effects. So far, he has only been sick to his stomach a couple of times, has lost most of his appetite and is weak. Please keep that in mind when you pray. We have been warned about mouth sores, foot and hand pain and severe jaw/ear pain. God has been keeping them away from Jed and we are so thankful for that. Jed's counts will also take a nose dive in the next couple of days, so we are praying hard for all illness to stay far away!! Dr Stine has allowed us to go to church tomorrow to celebrate Easter and then we have been put on strict orders to stay home as much as possible for the next 6 months. For those that know me well, that's really not going to be that hard on me. I am a home body and I enjoy doing projects. Looks like Jed and I will be doing a lot of painting on our back patio in the months to come. Josh is working on a play area in the back yard and I am sure we will spend many days outside. So thankful that we are facing this in the spring and summer. It would be terribly hard during the cold winter months!
When we were being discharged from the hospital, the nurses came in to remove all of the wires and needle from Jed's port. Jed lifted his shirt and said "some stupid doctor put this freaky thing in me." The whole room was filled with laughter!!!!
We came home Thursday night and CRASHED!!!!!!! I don't think I have ever slept so good. It may be the new fancy sheets on our bed that have been in the closet since our wedding day (the ones that are now in the washer from pee and vomit! LOL) or because we were running on no sleep and were completely exhausted. A little of both, I'm sure.
Since Jed is feeling good and is fever free, we have taken full advantage of this beautiful weather.
I told Jed that he looked like Forrest Gump...he just kept running and running and running! =)
We colored some Easter eggs this morning. 56 to be exact. =)
and participated in the Story egg hunt next to our home.....
Jed still had blue dye all over his hands but he refused to let me wash it off. Little did we know that blue dye causes "super powers"....at least that is what he told everyone! lol
Sissy (Kendall) is such a big help and watches his every move. I started noticing today that she would open every single prize egg as Jed found it and stuff the contents in her pocket. At first, I thought that she was taking his prizes! When they came around to me I asked her if she was checking out his prizes and she said she was checking for peanuts and stuffing all the suspicious chocolates in her pocket. (severe peanut allergy) Is that not the sweetest thing! The love a big sister has for her little brother!
I think she was getting tired of running after him. I love this pic. He is having a blast high in the air and she is taking a quick drink!
Normally, I am a huge holiday decorator in my house. This Easter season I haven't put out all my Easter boxes but I did want to do something in a couple areas of our home. I love this shot of our foyer. Just as it says as you enter our home, our family is truly blessed!

Since we are being EXTRA careful of every penny we spend anymore (goodbye monthly manicures...lol), I didn't plan on buying a thing for the holidays but I could NOT pass up this beautiful mother rabbit praying over her three little bunnies with the words "believe" written under them. It was perfect and the best $8 I have spent in a long time. I don't think I will be packing this one up in my Easter totes. I think this momma bunny may stay out all year long as a reminder to me to not only pray, but to BELIEVE!
I know this was a long post so thank you if you made it to the end!!!
Please pray that Jedidiah will stay as germ free as possible over the next few weeks. We go back for chemo #2 on Wednesday.
Thank you all so much for staying faithful in prayer for Jed. Thank you for every single word and prayer of encouragement. We know that we have a strong army behind us and we can't thank you all enough. Every comment, phone call, facebook message, card...EVERYTHING has helped to make this journey easier to bear.
We believe that God is using Jed to touch so many people, including his very own parents. Like I have said before, we feel as if we have a front row seat to an amazing move of God. What an honor.

"Give thanks in all circumstances, for this is God’s will for you in Christ Jesus”

1 Thessalonians 5:18

Posted by Lori Harper at 4:17 PM 34 comments