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