A week has gone by. It seems like it went fast. The week was filled with just taking care of Karly. When her Ommaya Reservoir is accessed with the chemo, 2 days of yuk follow. She is sick to her stomach, tired from the drugs, can't eat much, has trouble taking her pills, and overall feels crummy. I keep hoping for that one day where she will sit up, feel good, want to eat, and go out to do something. We pushed it a little on Wednesday when Aunt Debbie and Deana came. We had planned to go out to eat and find that perfect wig. The doc had stopped her constant dosing of pain medication while she was sleeping. When she woke up, she was in alot of pain. We let her push her button dose of pain medication several times while waiting on a pill so we could go out. She got herself ready and tried really hard to push through the pain. We got her to the wig store, but it wasn't too much fun. We did find a long blond wig that will need a good stylist to cut it the way Karly wants it. This makes me nervous because I don't know any here, and they get only one try. My friend Pam may have a contact that hopefully will be able to point us in the right direction. We didn't make it to the restaurant, so we ordered it to go and ate in her room. Thursday, was another day for the Ommaya, so it has been bad since then. Please pray for strength. She was wobbly yesterday when she was holding her drink. I have no idea when she will be ready to be an outpatient. Everyday, we wait for a good sign from her that she will be able to handle life on her own. We had a pounding of snow on Saturday...probably about 12"....but I don't know the real amount as reported from the weather service. I got a ride from the NIH police between the Children's Inn and hospital. The Children's Inn offered to house the pediatric nurses last night. It was very thoughtful of them. Today people are here, shoveling and clearing the campus. I am looking forward to my family arriving tonight. I need a reprieve, and she needs the laughter and distractions. Tracy and I hope to make it out tomorrow to do a little shopping. I bought a few things online, but haven't found everything needed yet. I don't know the area very well, but when Pam was here we learned how to get to Target, Kohl's, and Lowe's...three of my favorite stores.

Kelsey was here for a whirlwind visit Tuesday night and Wednesday. She tried to do her manometry appointment, but they got the scope to about her sternum, she had to cough hard, her back spasmed or strained. They had to pull it out and will try again in the future. Since then, her back has been stiff. She completed her study drug and barium swallow. She finished moving back home into her newly renovated room this week. She has appointments here on Tuesday all day, and takes her study drug on Wednesday. I think the 10 hour trip will be hard on her body. The Inn gave us enough rooms to be comfortable. This is a blessing.

Our friends, the Reads, stopped by on Thursday morning on their way to Florida. You would have to know them to know how this works for them. Anyway, Carmel had put the word out that Karly and I could use a laptop in her room so we could Skype home and friends. AND be able to do school later...DVD, CD, papers, etc. I know people donated to this need and would love to know who you are. It has been a complete blessing. We have Skyped several times. She was able to see her hamster, see her brothers and sisters, and enjoy being herself for a short time. This will be a well used tool for us to stay tuned into the world of our friends. Thanks for taking care of this need.

Sorry I don't feel very chatty today. I have a cold or sinus trouble. I have to wear a mask while in her room. I pray this passes quickly. I must go over and see her now. Catch up later. Love to all of you, Mom

Karly has slept most of the day today. Her stomach has been unsettled and threw up one of her medications. She will need to re-take it shortly. It is one of the meds for the cancer regime. Her head is still not as bad as it had been, so I am still thinking her leak is on the mend. Aunt Debbie brought homemade turkey and noodles, so Karly has been eating them every day. It is a special treat. She brought taco meat also, but Karly hasn't gotten to it yet.

Her room is the nicest on the floor, at least I think so. Pam brought Christmas decorations including a beautifully decorated, lighted tree, a glittery HOPE sign, wreath, and two strands of mini lights with greenery, and on a daily basis we are grinning at the beauty of it all. I think the nurses stop by just to be in the room. It is so positive. In fact, one just came by and repeated what I just wrote. It has been confirmed!

My sister, Angie, called me awhile ago with another story of outpouring love from a family up in her area. Not only did they contribute to Be The Match, but as a family have decided to give what they would spend on Christmas to us. "For unto us a child is born, to us a Son is given...," quotes Isaiah 9:6. They have taken the "unto us" and made it "into us Jesus was given". They are being Jesus to us in a way that they can. We have never met them, but the Jesus in them is outpouring love to us in a tangible way. I cannot even speak the story without crying. I am feeling such overwhelming love.

On his way home from church today, Tracy was contemplating what to fix for lunch. He was greeted with a home cooked meal when he entered the house. What a blessing! Thanks Kelly...again!

"And He will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."
and so it is, here in Maryland.
Love,
Mom

I woke Karly up this morning at 5:00am to get her ready for the Fantasy Flight excursion. She seemed eager to go. We had laid her clothes out last night. We boarded the shuttle to Dulles Airport. Upon arrival, we boarded flight Sleigh Ride 1 to the North Pole. It was actually listed on the Departure Board. We left the gate at 9:15 for a 45 minute flight to our destination. The window shades were drawn so the location of Santa remained secret. When we arrived, there were many groups of singers, dancers, craft and food tables, Santa, and Mrs. Claus. It seemed mostly geared for the younger kids, however, we had fun. Karly and Santa had a nice conversation about something secret, I think about me. She giggled. We were given a photo of her and Santa. She received a nice bag of gifts, made a few crafts, and sampled a few foods. We arrived back to NIH at 1:30. She was in a wheelchair the entire day. She was very tired, but she didn't complain about her head aching like it has been. This may mean she won't need the blood patch. She has slept the rest of the day. By the way, I braided her thinning hair, put a soft, cute hat on her, and she looked amazing. She has only dressed for two occasions since being diagnosed...Thanksgiving and Fantasy Flight. Tomorrow should be a very low key day. If she is feeling better, she has many crafts to work on....courtesy of Kelly.

Many of you may not know this, but one of my many projects that was to be done after the donor drive was redo our guest room for Kelsey. She had decided to move back home until her transplant was over. Our house is 50 years old and the carpet and paint hadn't been updated in a long while. For the sake of her health, I wanted a new floor, paint and fresh look for her. It was to be a surprise. When I found out that I wasn't going to be home for so many months, some friends asked what they could do to help. I asked if this was something they could do. My dear friends Carmel and Kelly took hold of this project. We secretly quizzed Kelsey when she was out here about colors. Karly helped make some decisions. I believe I can report that the room is now finished. Kelsey showed up at our house yesterday unannounced which is fine. She discovered the secret plan, and Kelly called me. We let Kelsey know that the renovations were just for her. I think the girl was shocked and awed. That was the expression I was going for. God is using His people in many different ways to bless us and help us. I really cannot think too much about what is happening at home or I get overwhelmed. However, Tracy and the family are more than surviving thanks to all the people helping out.

Tyler's situation with the car has turned out beautifully. He can now get himself home and back again when he needs to. My total attentions can remain on Karly. Many thanks to his professor.

One prayer request that I can think of right now is for my dad. He needs his health restored. Wisdom for the doctors. He came close to death while I was in Kazakhstan in October. I cannot fathom a funeral in the midst of all this, and it would devastate Karly.

Kelsey still has not been able to take her pain medications. Life for her is a struggle. I pray God finds many creative ways to bring a smile to her face and to take her mind off her pain.

Christmas is approaching, and we will be finding ourselves together in Maryland. We do not know where we will be...either at the Inn or my sister Debbie's. BUT I know it will be a praised- filled, belly-laughing time with all of our family here...maybe some friends too.

Feel free to comment. It is always a blessing to here from you.
Love,
Mom

Karly's lumbar puncture on Monday went well. We just received word yesterday that the spinal fluid they tested on Monday is clear of lymphoma. Praise God! She was scheduled for a blood patch to repair the spinal leak on Tuesday, but she had a fever, and it was canceled. Her fever cleared long enough for the surgeon to put in the Ommaya Reservoir on Wednesday. She woke up with an immense amount of head pain. Her head still throbs and aches even today, but most likely from the spinal leak. She had her first chemo through the brain port on Thursday. She didn't feel anything and much preferred this method over the spinal tap. The blood patch was rescheduled for this morning, but she had a fever last night, and it was canceled again. Her second cycle of systemic chemo was started today. For the next 5 days, it runs non-stop. I still pray for the leak to repair itself over the weekend. If on Monday, she still cannot sit up, then we will try to schedule the patch again. They usually don't do much when on chemo because her cells deplete, and she becomes very susceptible to infection. Karly had one of her better days on Tuesday where she sat up for several hours, took a shower, and we wheeled her over to the Children's Inn to shop for her brothers and sisters. She enjoyed the brisk air and getting out, but we wore her out. So much for washing her hair because after the surgery on Wed. they had her hair all mucked up with bacitracin. She is quite the grease ball and cannot get her hair washed for about 1 week. Her hair is falling out, so one of our priorities is getting to the wig store. Until then, we got some cute, tight fitting hats. She is still sleeping today which is for the best. Pam left this morning for Manhattan to visit her sister. My sister Deb drove up for the day bearing good gifts....fuzzy lounge pants, hat and scarf set, fuzzy soft footies, and fruit roll-ups, gushers, and homemade turkey & noodles, and taco meat for nachos later. We have done a good job of stuffing her with food. The scale said she had gained 3 pounds today. Way to go mom, Pam, and Debbie! Pam spoiled me with company, food, distractions, and outings. She especially spoiled Karly with back, arm, foot and head massages, Chinese food, laughter, and on the last day she really went above and beyond and spent 5 hours on a mission. Karly had a very bad day on Wednesday after the surgery. She was emotionally spent. I had to remind her of all the happy thoughts stored away for times like these...like her family, her hamster, her friends, Zach, volleyball, dance, and the cruise. This really helped her, so I had some help at home to get ahold of her photos which were on my computer. This turned out be quite an ordeal. The computer at the hospital and Children's Inn are blocked from many things including using flash drives. Pam had to get an IT guy to allow access to download the photos onto the flash drive. She went to Target, got all the photos, bought a photo album including stickers, returned with hours of fun for the future, and all the happy photos. She went through them last night. It made her so happy.

Kelsey's week hasn't gone very well. She returned home on Saturday, Dec. 5 with much delay from the weather. After she left the hospital, we found out that her liver counts were very high. She had to get her blood drawn at home on Monday, Tuesday, and Friday. Since her counts were on a downward trend, they allowed her to take the study drug on Wednesday. They will continue to monitor this closely. Because they had to take her off all pain medications, she is really struggling with pain. She flys out here on Tuesday and returns on Wednesday if all goes well. I plan on talking with the stem cell transplant doctor in a couple of weeks. Another piece of good news we found out this week is that the 2 people in Germany that were suspected of having Dock 8, in fact do have it. That's not the good news though. Both individuals were tranplanted, one 4 years ago, the other 1 1/2 years ago, AND both are doing fabulously.

I must go help her so more later. There have been many blessings, and things to be thankful for, and more of God being God in the midst of this struggle.
Love to all,
Mom

Karly entered her Neutropenic stage on Saturday. This simply means that she cannot fight off infections. The volleyball girls, Lora, Sami, and Grace had to wash their hands frequently. No flowers, skinned fruit, or foods that have set out can be near her. Her counts have started on the rise today, so hopefully she will be out of this stage in the next few days. She is scheduled for another lumbar puncture with chemo on Monday, surgery on Tuesday to repair the lumbar leak, and surgery on Wednesday to put in the Ommaya Reservoir. Her first chemo in the Ommaya is on Thursday. Her next round of systemic chemo begins on Friday. I signed her up for the Fantasy Flight on Saturday so I pray that she will feel like getting out and is able to get out. This Fantasy Flight is: get on a shuttle from the Children's Inn, ride to Dulles Airport, board a plane, fly to the North Pole(don't know if we actually go up in the air or just drive around), get out at the North Pole, receive gifts from Santa and his elves, and fly home. It should be fun. I hope her cousin Deana can go with her. Karly had a lot of fun with her girlfriends and was sad to see them leave. My friend is still here so we won't be alone this week. Pam offers distractions in many ways, and if you know her you understand what I mean.

Pam took myself and Kelsey out Friday evening(Karly had her girlfriends) for dinner, pedicure, and manicure. It was the first time I had either. We laughed alot and loved being pampered.
Kelsey flew home yesterday. However, after she left the hospital we found out that her liver counts were way up. I won't know the outcome of this most likely until tomorrow. She is getting a blood panel today at BMH. Pray this is not a side effect of the new study drug. They haven't seen this as a side effect, but no one like Kelsey has ever taken it. We really want this drug to work.

My sister Angie's donor drive was a success yesterday. Many people attended, got swabbed, and worshipped with the bands she had arranged to play that day. Tracy said the worship was awesome!

My worry level goes up and down as news filters in, but I am feeling rather at peace through most of it. I am actually having fun watching God work through His people. Most of you know that my son Tyler was hit on 465 going home from the Muncie Donor Drive on Nov. 15(not badly hurt). At first we thought he was hit by an uninsured motorist, but found out 15 days later that the guy was covered, his insurance company took liability, and everything is working out. Tyler was praying this past Thursday night about how cool it would be for God to give him a car for his birthday(Dec.5). But then thought that wouldn't happen. Well, on Friday his professor called him into his office and gave him a car. WOW, the power of God is awesome. Also, the same week a girl he knows from Germany told her dad that all she wanted for Christmas was a swab kit. AND, the Wabash Senate donated over $1000 to Be The Match for a second donor drive on Wabash's Campus. AND, there was a packed crowd all day at Applebee's in Crawfordsville for a percentage to go to Be The Match. After all the bad days he had already had in the past month, God rained so many Blessings down in one week. This is the undeniable work of God. When all seems lost, or hope is failing, God's power becomes so evident. It is when we are most out of control and willing to let God work, that we see His work. His unfailing LOVE is abounding all around us. Mom

I continue to be awed at God's presence and timing through this reality that still at times feels like a dream. Karly continues to be in a great amount of pain from the lumbar puncture on Nov. 25. She must remain flat and when she sits up to take a medicine or use the bathroom, her head just wants to explode and gets nauseous. Everyone is sure it is a lumbar leak which cannot be repaired until after the last lumbar on Monday, Dec. 7. We hope that the last lumbar will indeed be on Dec. 7 with the Ommaya Reservoir going in on Dec. 9. Her spinal fluid volume in the area to be accessed is reduced because it is leaking out. This just complicates things because they want to take out 5cc fluid when they put in 5cc chemo but there isn't enough fluid to take out. We had a very good(probably the best and most experienced doc) who assessed the situation and will make a report about this for the next guy. They will try a different space on Monday, and I pray that it goes without incident and it is her last one. I am always praying for wisdom for me and the doctors. I pray for peace and rest for Karly. She is so courageous!

Kelsey was having a painful morning. Her port area is quite sore, her head just aches, as well as her body. They started the drug yesterday and all went well. The plan is for her to still come home on Saturday.

Pam took me out yesterday for shopping and eating out. She bought more Christmas decorations for Karly's room. It is looking like Christmas around hear. Probably more here than at home in Muncie. In the evening when we have the room dark, it is aglow with twinkles of brightness, happiness, and hope. Thank you Pam! Thank you Tim for letting me have her for now.

It is disappointing to not have Karly feel well enough to play games, or go shopping, or take a walk(today it is sunny and warm around 62) but isn't patience a virtue so we are being virtuous around here. I am learning to be still...this one is hard for me. Those who know me understand that one. Oh yeah, did I mention patience. Another hard one for me. I will tell you that the Lord indeed is having His way out here in Maryland. Praise Him! We are at a place where(physically and mentally) we are NOT in control. Praise be to Him that He is!

Thanks to His people for listening, caring, and praying for us!
Love,
Mom

Hey Everyone(does this sound like an easterner),
I've been at the National Institutes of Health since November 5. It was a tough time not knowing what was wrong with Karly, watching her suffer in pain, going through the tests, and watching her loose her right facial movements. I spent a lot of Internet time looking for answers, and ultimately that still small voice was telling me something serious was happening. We didn't want to look there or think that this was something more than a virus, but as her degree of symptoms increased the more obvious it became that it was something serious. Through the instinct of knowing my child and God being in control, I was able to find and work with our Dr. to discover that missing piece of the puzzle. She was not presenting with any of the normal signs of cancer at that time, yet we were led to look in her abdominal region(mind you..no symptoms in her abdomen) where the large masses in her kidney were found. She has Diffuse Large B-cell Lymphoma. Her type of cancer is aggressive, yet the type of B-cell affected is the good kind to treat. Although this is not a diagnosis we ever thought we would be facing with Karly, we will stay strong in faith and trust Jesus. As her team of lymphoma doctors say, "She is receiving the state of the art treatment for lymphoma." They have every confidence in a good prognosis. They have never treated someone with a Dock 8 mutation, however have treated rare immunocompromised patients with a great outcome. Her cancer is stage 4 because of the locations in which it was found, namely brain, kidney, bone, and along the mandibular nerve. She has completed her first 5 days of systemic chemotherapy, and two chemo treatments in her spinal fluid. She will be getting an Ommaya Reservoir, hopefully, on Dec. 9 so we need pray for her counts to be up so we can proceed with this procedure. She will continue a very aggressive regime for 4 months. We will be staying close to NIH for all her medical care. Our plan is to live with my sister, Debbie, about 1 hour south of NIH. Although she is having the state of the art treatment, ultimately her healing will come from God. Prayer will be the success for her treatment for by His stripes we are healed. Our friends, family, and even strangers have been supporting us as we climb this mountain. Our faith can help us move mountains.

Jeff and Zach Beeson came on Nov. 21 to keep us company. They came bearing a plethora of gifts and provided good food, great company, and plenty of distraction. We were able to celebrate Zach's 16th birthday on Monday, Nov. 23. His dad left on Monday, and Zach stayed and traveled back to Indiana with my family on Sunday, Nov. 29.

I was excited to have Kelsey and Tyler join Karly and I on Nov. 23. Karly perked up and loves the distractions. Then, on Nov. 25(my birthday), the rest of the family joined us at NIH. We were all able to go to the Gilley home(my sister's house) for Thanksgiving. Karly hasn't been able to sit up(lumbar tear) since Nov.25, but she enjoyed the awesome tasting food. She has been given a pain button which allows for better pain relief until her body heals the tear or it can be fixed.

Kelsey came in to NIH with pneumonia. She has been treated for this and tested for many other viruses and bacteria. She had 3 skin biopsies. They are using these to confirm molluscum on her skin so she can start a new protocol and new drug today. Everyone here is quite excited about the outcome of this drug including Kelsey. She will need to return here every two weeks for follow-up which includes bloodwork, pictures, curretage, and taking the drug. We are still waiting for the outcome of the donor drive, but we trust God with the timing of this transplant. Hopefully Kelsey will be returning to Muncie on Saturday, Dec. 5. By they way this is Tyler's 20th birthday and my sister, Angie, is holding a benefit concert and donor drive for the girls on that day. Great birthday present for Tyler. Yesterday, she had a power port put in her chest and an endoscopy where they took several biopsies. The GI doctor would like her to join his protocol to work on diagnosis and treatment of Eosinophilia type disorders. She's still thinking on that one.

My friend, Pam Cullison, came on Monday, Nov. 30 from Evansville, IN. She is full of life, loves to play games(extremely competitive), adventurous, and decorated Karly's room with a Christmas tree and other festive lights and displays. We will all be getting pedicures, also. She brings a lively spirit and laughter to both girls. I love having my friend here to talk with and cry with and laugh with. Thanks Pam!

Karly has a van load of volleyball girls coming Friday for the weekend. The parents of one of the girls are driving from Indiana. Karly is very excited about having girlfriends around. More on that after the fact.

All in all we are doing well, people are helping at home which helps me not worry about my family at home as much. Our spirits are hopeful, we are courageous, and the fight is on. Thanks be to God and to His people!
Blessings and heartfelt thanks,
Mom