Wednesday, July 30, 2014

Day 4 & 5

She was experiencing gut pain most of the day until she finally got an extra dose of nausea medication which puts her to sleep. When she woke up, she felt better. She was able to shave Zach's head and play some games. The fever hasn't returned, so they think it was the result of the Cytoxin messing with things. All of her cultures have been negative, and her lungs look stable. Her sinuses are worse, so she will see ENT for cultures to make sure they aren't missing any bacterial or fungal boogers. Ha Ha! She is permanently tethered to her immunosuppressant. This will continue for awhile and eventually go to a pill.

Nothing new today. She is having a pretty good day. They have said that she can go out to the wig store for her try-on today since she is not neutropenic yet. Kidney and heart still with-standing all assaults. God is good all the time!

Tracy, Konner, and Kassidy are taking the Metro into DC today. The only goal was the Holocaust Museum. The girls had alot of fun over the last two days at the Teen Retreat. The boys started "Pinky and the Brain" for Karly's morning entertainment. Oh boy!

They expect the counts to start rising about Day 14. It is hard to make plans. Just have to see how she is doing that day and go from there. We are encouraged. Thank you for the cards and notes. They make a difference.

To God Be The Glory!

Tuesday, July 29, 2014

Day 3

Yesterday went well. She received large doses of fluid to help the Cytoxin go through her and several other drugs that go before and after it. She spiked a fever this morning which causes quite a clatter. They will be running a few scans to look at sinuses and lungs. They are being careful with all symptoms...could be just the Cytoxin messing with the things it's suppose to mess with. More nausea today also. Really still doing great. Her counts are expected to zero-out within two days.

We were energized today to meet a DOCK8 family from Alabama. The older son is 9 months out from his fully matched transplant and doing so awesome. His younger sister is Karly's age and living life very well right now. She will do a fully matched transplant sometime in her future. The unique thing here is that their older sister was the full match for both of them. That is amazing.

Tyler is walking better...meaning he has less of the swag of a Lego man. I accidentally swiped an area on his back, and he let me know about it. He has bruising that is evident now.

Kassidy and Konner are participating in the Teen Retreat at the Children' Inn. They had fun with the activities and have met new people they can call their friends.

Karly felt well enough about 5:00pm yesterday to shave heads. We got three done before she needed to rest. Zach's head was supposed to be the after dinner entertainment, but she never perked up enough to get er done...maybe today.

Karly's heart and kidney function have been holding up well. We are excited that she has been doing this well. Praise Jesus from whom all blessings flow. Thank you family of believers for staying strong.


Saturday, July 26, 2014

Day 1

I walked into her room this morning to an awake girl who tried to eat breakfast. What an awesome start! We loved our family visiting today with smiles and hugs and games. Karly was amused all day. She hasn't even had a nap. We played Apples to Apples. Tyler was discharged. Caught up on stories.
Once the pictures started, it was a hoot. Mr. Magic Hips appeared.

Day 0

Today was very busy to say the least. Tyler was suppose to be taken to the OR at 7:30. When we arrived, there was a piece of equipment that wasn't ready. They finally took him back at 10:00am.

French Beret
 I loved his humor after the first push of "happy juice". It felt like a glass of wine. The anesthesiologist asked if he wanted a second one. He said to wait a minute, then he replied, "Yes, I would like another one." He was feeling pretty happy. I knew the procedure would take about 3 hours, so I went to Karly's room to help her with breakfast and morning medications. I stayed with her until about noon, then went back to the OR waiting room. About 1:00pm they were done, and said they got all they could get, and he was doing well. I stayed with him in the recovery room until Karly called and needed me to help feed her. She had gotten up and found that her BP was too low and was woozy. Now I was divided. Tyler's pain threshold had finally started to come down, and the nurse was going to give report to his floor nurse, so I thought he would be moved down shortly. Karly and Tyler were in close proximity on the same floor. I went to help Karly. When Tyler came down, I helped get him settled. The narcotics they had given him in the recovery room probably caught up with him. He was woozy and nauseous most of the rest of that day. He was so hungry, but every time he sat up and ate a couple bites, he had to lay back down and felt like he was going to be sick. This went on all day and finally got sick. He just wanted to endure more of the pain than get any more of the narcotics. Eventually with the help of nausea medication and just Tylenol, he was able to eat and wake up. His pain level is still pretty good, but is just using Tylenol to cope with it. He is barely anemic, but will take some iron tablets and will recover with some time. He has the swag of a Lego Man when he walks.

Karly's day was not going so well since 5:00pm Thursday night. She had chills, nausea, body aches, and headache. They think it was the total body irradiation. She pretty much slept the whole day with little up time for meds and potty. She even slept through Uncle Alan's, Aunt Joanne's, Regan and Anna's visit Friday night during her infusion. After Tyler's bone marrow was harvested, it was taken to a lab for some sort of process. Karly started receiving the cells at 5:00pm and went for 6 hours.
She received a whopping bag full, so Dr. is quite pleased with this. Now we see what these cells do in her body. Quite amazing!

Day -1

Tyler had a busy day with appointments then got admitted and settled in. He was a trooper. The charge nurse couldn't get an IV in him so after 2 tries, she got an ICU nurse to start one. He had fluids run all night. Karly had her total body radiation that afternoon. It gave her a suntan, but it really zonked her. She slept pretty much 24 hrs with an occasional try for food and to take meds. She didn't feel well...nauseous, chills, body aches, and headache.

I was so thankful to have Zach be with her when I left. It seems to just help knowing that someone else is looking out for her. Nursing staff is not perfect, and mistakes are made. We are thankful to have someone always with her. We know that God is in control and continually look to Him for all things.

I went back late that night thinking I would get some sleep before the early morning hit, but God had other plans. I met a 13 yr. old DOCK8 patient and his mom. They are from Saudi Arabia. He spoke English pretty well. She understood most of what I was saying and her son translated her questions. Her son has a full match(his cousin) and will be getting transplanted within the month. I found out another DOCK8 family will be here next week, so I look forward to finding time to meet them. I hope that Karly will be well enough to be able to meet them all. I am excited to meet some more DOCK8 families in person.

Day -3

 Day-3 we decided to give her a shorter haircut in preparation for the upcoming hair loss. We made an appointment to pick out a wig for the afternoon. Karly wanted Zach to give it a try. All we had were hospital scissors, but we made it work...knowing we couldn't mess it up very much. I took over when Zach was done trying it. It turned out pretty well. She picked out 3 wigs which were ordered, so we are waiting on them to be delivered here so she can pick out the one she wants. It was a blessing to get this done while she was still feeling good.

Wednesday, July 23, 2014

Day -2

Karly has been doing very well this week. This is what I expected. She is trying very hard to be as active as she can. She is eating less and becoming more tired. She fears the suffering of what the next several weeks will bring, being stuck in bed because she is weak and miserable, not eating because of the mucositis, infections of all types(fungal, viral, and bacterial), her kidneys or heart plummeting because of the nasty drugs, SO we come against all those things in the name of Jesus. May she not walk in fear, but keep strong with her eyes focused on Jesus and his miraculous healing power. She will not be allowed to leave campus for several weeks until things begin to build back up and stabilize. We have prayed and are praying for God's protection and wisdom and against all that would come against us. May our eyes be alert to the enemy prowling around: The following scriptures we pray:
"Be sober, be vigilant, because your adversary the devil walketh about as a roaring lion, seeking whom he may devour,
But the Lord is faithful. He will establish you and guard you against the evil one.
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. 
He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.” For he will deliver you from the snare of the fowler and from the deadly pestilence. He will cover you with his pinions, and under his wings you will find refuge; his faithfulness is a shield and buckler. You will not fear the terror of the night, nor the arrow that flies by day,
Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me."
This list is endless as is God's breath and power. Pray as the Holy Spirit leads you.

We are so looking for Tyler's arrival tonight. We pray for his safety and bone marrow harvesting on Friday morning. We pray for her body to accept it FULLY without rejection or GVHD. May this haplo-transplant pave the way for others that do not have a match.

We continue to pray that we are light-bearers. We pray for those that enter our room that they experience God's presence and seek it. AND we pray that we reflect Christ through all we do.

Thank you for standing through this with us. If you want to add a card to Karly's card wall or bless her in some way, things can be sent to: Karly Koch, The Children's Inn, 7 West Drive, Bethesda, MD 20814

Saturday, July 19, 2014

Day -6

Today started the first 2 chemo drugs. Besides being sleepy, she is doing well. Prayer points are to keep fluid levels balanced while urinating out the chemo, keep eating, her left arm and hand are swollen(don't know if it is PICC line related or Palifermin related) but hoping no matter what it just goes away, nursing staff be on the ball(2 in a row were not good at their job and couldn't communicate with good English), and Drs. be vigilant with the numbers. I went out today to get things to liven up her room. She decided on some key saying that we hope will illicit conversations and make her smile.We are feeling settled into our transplant room and into our room at the Inn.

 We had our first visitors from Indiana. My sister Angie, her husband Eric, their 4 children, and my mom arrived with some food which came outside the hospital walls. This is always appreciated. Unfortunately, Karly slept through the entire visit, but they prayed for her and went on down to my other sister's house for 2-3 days before heading to some historic battlegrounds and sites.
   It was sad yesterday, because Karly's hamster died. She had been sick and Karly was treating her, but she just didn't pull through. She did live her life span and gave Karly and girls great snuggles and entertainment. We are now hamsterless. I guess this is a good thing. Karly won't be allowed around hamsters for at least a year or two. I cannot remember what they said. I'm sure as soon as it is allowed, we will have 3 running for each of them.
   I'm having some trouble with the new blog layout..doesn't seem to allow me to do as much. Thanks for praying! Mom

Saturday, July 12, 2014

She has signed the papers!

After Karly's week of testing, we were able to fly into Indianapolis July 4, get picked up, and drive 3 hrs. to visit some close family friends for the holiday weekend. What a fabulous time that was! Lake activities, games, awesome conversations, and relaxation. Tracy and Karly went to NIH on July 8 thinking she would sign the papers, but they weren't ready yet. July 9 was a crazy hard day for Karly because of all the last minute multitude of other tests and clinics she had to get to. She started her day at 8am, but didn't even get to eat until 3:00pm.We had thought Karly would be signed into the protocol by the beginning of that week provided all tests came back as needed. Well, her testing proved to be fine...except the heart which remains the same, but the safety board hadn't approved the changes made until Thursday, July 10. Tracy and Karly just kept going with the never-ending flow of unpredictable schedule changes and finally arrived back home yesterday following her bone marrow biopsy. As Tracy tells the story, he thought he wouldn't have any issues being with her in the procedure, but after the long aspiration needle come out, he about passed out. He was asked to sit on the floor until it was over. She is sore and walking very slowly. She is home long enough to rest a bit, see her family, hamster and wash clothes, then back again to NIH on Sunday for some more prep before her other lines go in on Friday and chemo to start Saturday, July 19. It will be another crazy week full of testing. One of the chemos we need to know how she clears it, so Monday they give her a test dose then take blood every hour after and that gets sent to an out-sourced lab. We really need the results back before she gets that chemo. The emotions are all over the place. Karly's boyfriend, Zach, will be going with her on Sunday and staying there until he feels like he can come home. I will be flying out on Friday and staying until she comes home in approximately 100 days, sooner if all goes exceedingly well. Tyler goes out on July 23 to prep for being her bone marrow donor. The rest of the family will be coming out just after that. The head shaving will occur sometime during the last week of July or early August. I will post that when it happens, because they can be a bit creative. I love the way they support her. We are still praying as Jesus did in the Garden of Gethsemane, "My Father, if it is all possible, may this cup be taken from me. Yet not as I will, but as you will." It is totally in His Hands. We hold her out to Him for she is His. We Trust. We have Faith. Please pray in the Spirit, and you will be led how to pray. I will keep this blog updated as we journey on. Most importantly we covet your prayers.