Monday Post Treatment Update

This morning Kya had her IV Infusion. First, I went and had Dr. O'Neill's nurse give her a methotrexate shot and show me how to give them. Then we went downstairs and Kya had her treatment. They used a longer needle this time and Mavia had an easier time pulling the blood. Her infusion went great also. We thought we were doing great when we walked out of the hospital at 10:30 a.m. So, we headed back to Edmond to get daddy from the dentist. We were almost to the dentist office when Kya said she was sick and then proved it! We stopped and I took care of her for a while, then we went on to the dentist office. Kya stayed pretty calm and quiet for a while then she said she felt better. About an hour and half later she ate some chicken and a few french fries. Lake was finally finished so we headed back to Elk City. About El Reno she started getting sick again! She was sound asleep when she got sick this time. She woke up, threw up, and went back to sleep. She slept all the way to Elk City. When we got to Elk City she said she felt better, but she was still very pale. She has drank some gatorade and ate a few fruit snacks and she hasn't gotten sick . We are hopeful it was just to much medicine combined with an empty stomach. We pray that she is not developing some sort of reaction to something. It is truly a balancing act to keep everything in line and working properly.

Thank you for the many prayers. Please keep praying for Kya and that she continues to feel better. We know that with your prayers she can be healed! Thanks again for your prayers!

Kalee

Playing in the Snow!

Kya is doing pretty good today. She decided she wanted to play in the snow this morning. so, we bundled up, lathered on the sunscreen, and went outside. That didn't last very long! She got really cold very quickly and was ready to go back inside. But, not before we captured a few shots. Kaysa and Daddy stayed outside and finished the snowman!

Watching it Snow!

Kya is so excited it is snowing on her house! (Kaysa is very excited also!) They can't wait to go outside and play in the snow. But, they are going to have to. I told them not until tomorrow. Maybe it won't be so cold and blowing. Kya has to be careful in the extreme cold anyway. She won't be able to stay outside very long.

Kya has been very active today. She has ran and played and climbed on the couch to look out the windows rather regularly today. She has definitely done her own physical therapy workout. Her rash is still pretty pink, but hopefully the cellcept will take care of that in the upcoming weeks.

Dr. Pachman called us today and said that Kya was being treated very good and aggressively. She felt that Dr. O'Neill had done a very good job of being aggressive from the start and getting Kya's disease under control. She told us that all of Kya's other tests came back very good. She feels that the Cellcept will work in about 6 weeks. Then we should see some changes that will get her on over the hump. She was very positive about working with Dr. O'Neill and us coming to Chicago every three months. she was encouraged that Dr. O'Neill called her as soon as she had the bad lab result. This is an answered prayer and we know that God is in ultimate control!

Thank you again for your prayers! Please continue to pray!

Kalee

Waiting On Snow!!!

Kya started her Cellcept yesterday. She is doing pretty good. Her rash is flaring up again, but that is to be expected with her Aldolase back up. Her muscle strength is holding pretty steady. I think that she may feel sore and achy again. She asks to take a bath often. I think the warm water feels good on her muscles. Besides that she is going pretty strong.

We are all at home together today due to the winter storm that is coming. I plan on taking it pretty easy and just having a relaxing day. Dr. Pachman is suppose to be calling us back today. I am ready to talk to her and get our treatment plan outline from her. I know that her and Dr. O'Neill have already spoken and they are working together very well.

Please pray for us as we travel to Oklahoma City on Sunday. Lake has an early morning dental appointment in Edmond and Kya has a treatment at Children's at 9:00. They both need your prayers and I may need more dealing with both of them in one day! We appreciate your prayers and support! God has blessed us and we know it. We were not suppose to take the treatment that Friday, we were going to wait until Tuesday. I just did not feel comfortable with that length of time so they did it on Friday instead. By that point her level was already elevated to 10.9, just imagine what it would have been on Tuesday. God has definitely taken care of us and put us in the right places at the right times. Dr. O'Neill was able to call Dr. P since we had already been to Chicago and together they figured out what to do next. Isn't God Great!

Thank you again for your prayers and continued support! Please remember that The Cure JM fundraiser will be next Friday, April 3rd at 7:30 p.m. Come if you can and support a great organization. For those of you who can't and have already sent donations Thank You Very Much!!! Once again thank you for prayers, support, donations, and everything else!

Kalee

Fundraiser Moved

They have postponed the Red Carpet Community Theatre Cure JM Benefit fundraiser for Kya due to the winter weather coming in. They have rescheduled it for next Friday night at 7:30 p.m. Thank you for your understanding and support!

More Meds!

We just got the phone call that Kya's Aldolase is back up. It is not as high as it first was, but it is greatly elevated. This is not a good sign. They added 2 more medicines to her daily routine. She will now also take Cellcept and Folic Acid. They also said to go ahead and start the Methotrexate injections. We also have to move her IV Infusions closer together again. I am really starting to hate this disease!!! Just when you think things are getting better and normalizing you make a sharp right turn and it throws you totally off course.

I am very thankful that we have the team of doctors that we do. Our Dr. in OKC called Dr. P in Chicago as soon as she got the bad lab results from Friday's tests. They worked together to figure out what to do. This is such a blessing!

Please continue to pray for us and for Kya! Thank you for all of the many prayers. We will continue to be thankful for the small blessings and realize that God is in ultimate control and He knows what we can handle.

Thanks,

Kalee

Made it through Monday!

Kya has had a pretty good weekend. Having the IV infusion on Friday changed our schedule quite a bit. We usually are on the downhill side of an infusion when we take our Methotrexate, however this weekend we had them on back to back days. I think that they kind of offset each other and maybe it worked a little better. Kya had a hair cut Saturday morning and was definitely feeling very good from her infusion. Then, about 1:30 p.m. I gave her the Methotrexate. She had a good afternoon and evening just kind of snappy. She slept good that night and took a 4 hour nap Sunday afternoon and still went to bed by 11:00 p.m. This was very exciting and unexpected. She has had good strength and her rash looks pretty good.

Today, Kya stayed with Grandma Denny and went to dance. She was kind of territorial at dance, but overall she did good. Hopefully, she will continue to sleep and not have the normal 3 or 4 nights of insomnia from her medicines.

Thank you for all of your prayers. We feel so blessed by each of you. There are so many people who have done special things to help us out or have given to Cure JM and we appreciate each and everyone of you! To our nation wide prayer warriors please keep praying! It is with your intense prayers that Kya is doing as well as she is.

Also, I just realized this weekend how many people are actually keeping up with this blog. I have a disclaimer and an apology. I really do know proper English and Mrs. Sarena Kauk you really didn't fail with me. I am just glad to at least get a blog posted every other day, much less make sure that it is typed correctly! I am sorry if I have typos or don't make sense or jump from subject to subject, but that is just how my mind is working right now.

Thank you again for your patience and prayers! Your physical, emotional, spiritual, and monetary support are greatly appreciated! Please keep up the prayers!

Thanks!

Kalee

Finally Friday!!!

Kya had a treatment today. They struggled with pulling her blood, but once that was finished her IV Infusion went well. Kaysa came with us today, but she said she, "I don't think ever want to come back." At least she understands now what Kya is going through.

On treatment days Kya knows from the time she gets up what is going to happen even if we don't tell her. She was not wanting to go to her treatment at all, but she knows that she has to go. We tried to make it as fun of a day as possible besides the treatment. However, it is hard on everyone during the treatment.

Thank you so much for your prayers! We can't imagine what it would be like without all of the prayers surrounding us. We heard from Chicago this morning, but they called to tell us that all of her test results were not in yet. They said that Dr. P would call us with a treatment plan as soon as she gets all of the results back. So we are still patiently waiting. Please continue to pray for us and for Kya's healing. We know that God is the only way that Kya can truly be healed! Thank you again for your support!

Kalee

Day With Grandma Denny

Kya has had a good day today. She spent the day with Grandma Denny at home. She said that they played games and that she took a good nap! Then after school Grandma Trish picked her up and she played in the sand under the shade trees. Her strength seems pretty good today! We went to the playground this evening and she climbed around on some of the toys. She even did the slide several times with a little assistance. I can definitely tell that she is getting stronger, but she still has a long way to go. The wind was blowing (Imagine that!) so we didn't stay outside very long. Right now she is watching Cinderella and getting ready for a bath.

I just want to remind everyone about the Cure JM Fundraiser that the Red Carpet Community Theatre is putting on in Kya's behalf. It is Friday, March 27th at 7:30 p.m. They will preform "1000 Cranes" and have a benefit auction. It is by donation only. Everyone is welcome to attend! We received a very pretty Bear Paw Patch quilt made by Sue Carpenter, (no relation) from California whose daughter also has JDM, to use at the fundraiser auction. Please help us make this fundraiser a success! If you cannot attend but want to donate you can call Lake at (580) 303-0090. You can send in a donation made out to Cure JM Foundation with Kya's name in the memo line to:

Kya Carpenter

PO Box 72

Leedey, OK 73654

or you can make a secure donation online at http://www.curejm.com/team/donations.htm. At the bottom of the form where it says "Donation in honor of" just type Kya Carpenter in the blank.

Thank you again for your many prayers! Please remember to pray for us on Friday as Kya has another IV Infusion. God Bless you all and Thank You!

Kalee

Kya has had a good day! Grandma Denny came and stayed with her at the house and she has been able to play at home all day! It is very rare that she doesn't have to get up and go somewhere. She really enjoys days at home. Tonight we went on a walk and took all of the dogs with us. Kya really enjoyed getting out and getting some fresh air. She also likes to watch us with the dogs. We hook Dora to her stroller and she walks with us.

Thank you for the many prayers and please continue to pray for healing. Kya has come a long way, but she still has a very long road ahead of her! We are so blessed to have such caring and loving friends and family. Thank you again! Please pray for all of the JDM kids and that the researchers are quick in finding a cure! Thanks!

Kalee

Good Ending to a Crazy Week

Kya is doing pretty good. She has had a busy week, but she is holding strong. She spent Friday playing with Kaysa at Grandma Trish's house. Then, she got to stay with Grandma Trish Saturday while we went to Oklahoma City. Tate, our nephew, was playing in the 2A state basketball championship. Lake, Kaysa, and I went to watch him play and they won the Gold Ball! The Pawnee Girls and Boys both won the State Basketball Championship! Congratulations to all of you! We have had many cards and prayers from these people and they are very special to us.

We are so blessed to have prayers from all over the state, country, and even other countries. We appreciate everything that everyone has done for us! Please continue to pray as we are in a holding pattern and are not for sure what all is going to change in Kya's treatment.

Many people have asked how the Chicago trip went. For the most part it went very well. We won't know anything until after this next Friday. The doctor is going to meet with everyone who evaluated her and look at all of the test results. Then, she will decide on a plan of action, talk to our doctor in Oklahoma and call us with the new information. We are very anxious to find out where we are headed and what will take place, but we know that she has to take time to make sure everything is just right! Please pray for us as we await these results!

Once again thank you for all of the many prayers! We love you all! Congratulations Tate and Leah your teams did great! Kya says Hi!

Kalee

We are HOME!!!

We made it home and we are all very glad to be back in Oklahoma. Kya was so excited to see her Grandma Trish and Kaysa! She has weathered the trip very well. She is tired and cranky, but she has spent 28 hours in a car seat in the last 84 hours. Add 12 hours at a hospital, the time spent driving around in Chicago, and factor in that she is 2. She has every right to be crabby! She thought that she wanted to stay with Trish last night, but when Kaysa and I got ready to leave she decided she wanted to be with mom and Kaysa. However, this morning she was ready to go stay with Trish again!

Her rash looks pretty good today. Her movement is a little stiff, but that is to be expected since she didn't get to move around much yesterday. Hopefully a couple of days not in the car will help loosen her back up!

Thank you for your very many prayers! We appreciate every thought and prayer! Kya is truly a blessing and we know that God will take care of her! Please continue to pray for the team of doctors as they will be consulting together to figure Kya's treatment plan. Let them work together to do what God wants and what will make Kya better! They will call us next Friday and let us know what they want done, until then we will treat her as we have been. Thank you again for all of the prayers and support!

Kalee

A Very Long Day in Chicago

We survived! Kya has had a very long day at the hospital today. First of all she did not like not being able to eat or drink since midnight. She usually drinks quite a bit of Gatorade through the night because her medicine makes her thirsty. Since she could not drink last night we were up from about midnight until 4 a.m. wanting something to drink. When she finally fell asleep we had to turn around and get up at 7 a.m. We arrived at the hospital at 7:45 a.m. Kya's first adventure was in radiology where she had to do the swallow test. This was going really well until the radiologist didn't show up in time and by the time she got there Kya was in no mood. She did not want to drink or eat anything they gave her. (Of course everything was covered in Barium!) Finally I took her out of her seat and put the barium in a medicine syringe. We got the radiologist set and when I put the syringe in her mouth she quit screaming and took the barium. They were able to get the photos they needed. But, she was very upset at everyone. She told everyone they were not her friends and that she wanted grandma.

Next, we went upstairs to find the rheumatology department. Once we located it we found out that we could go until 1:00 p.m. We went and grabbed Subway for lunch and Kya fell asleep on the way back to the hotel. She took a good 2 hour nap before her afternoon marathon. We arrived back at the hospital at 12:45 p.m. and were placed immediately in a room and began the process. First Kya was weighed in and measured. Then, she saw Gabby, a member of Dr. Pachman's research team, and we learned about what research is going on and filled out all of her paper work. Then, we went and had microscopic pictures of her nailfold capillaries taken. That is very important in accessing the activity level of the disease. Then we saw one of Dr. Pachman's nurses who asked a few more questions. After that Maria, Dr. Pachman's fellow, came in and did an assessment of Kya's general movement and looked at the progression pictures we had of Kya. After Maria came in we waited a little while and then Dr. Pachman came in. We had a very good visit with Dr. P and she answered many of our questions. Then she evaluated Kya herself.

Dr. P does a very thorough evaluation and really works well with Kya. And believe me Kya was in no mood by the time she came in. The first thing she told her was to go away! But, Kya did very good and worked with Dr. P.

After Dr. P the Physical Therapist came in and then the Occupational Therapist. They had to use bribes to get Kya to participate, but it worked. She will do anything for stickers and Chocolate Chip cookies! After they were done, well Kya was done, Jaque came in. Jaque is a volunteer mom who has a son who is 21 with JDM. He has been being treated by Dr. Pachman since he was 11. She just comes by as parental support and to answer anything on a parent level or just to say "Hey I have been there and it will get better!" Once Jaque was done the nurse came back in with Kya's new prescriptions. Then, she tried to access Kya's port for a blood draw. She was unable to get it to flow so they called phlebotamist to access her port. Carrie came and accessed it on the first try and she had to draw 14 tubes of blood. They were able to leave her port accessed and we went downstairs and had her IV Infusion. We were at the hospital for 12 hours and got everything done that they usually do in 3 days. But, it sure made for a long day!

Kya will have to travel to Chicago at least every three months for a while. Thank you for the many prayers. We can tell they are already being answered! Thank you to everyone for your support. Please continue to pray for safe travels as we will be leaving tomorrow! Also, please pray for continued healing in Kya's disease. Thank you again!

Kalee

A Note from the Windy City

Kya has had a good day. Her rash looks pretty good today. Her movement is a little stiffer and her knees keep giving out on her, but she is in a pretty good mood. We slept in this morning and haven't done very much today. We figured out where the hospital is, how to get there, and where to park. We are ready for in the morning.

We ordered in supper to the hotel tonight. Kya said we were having a tea party. That is one thing about Chicago, they will deliver any kind of food to you! We just finished supper and are playing with Barbie dolls and princesses. Hopefully we can get to bed at a decent time tonight!

We have discovered that there is one windier place than Oklahoma and that is Chicago! The wind was so strong that Kya couldn't stand up against it at one point today. Right now it is blowing so hard that it is blowing the curtains in our hotel room with the window closed.

We found out that we have the swallow test at 8:30 a.m. After the swallow test they will see if she is aspirating at all. If she is not they will probably schedule the MRI for tomorrow. But, they will have to sedate her for the MRI and they won't do that if she is having any throat or aspiration problems. Then starting at 1:30 we have clinics. In clinics they will do PT/OT, blood draws, nurse evaluations, muscle strength evaluations, a hematology team will evaluate her, and last she will see Dr. Pachman. They said to plan on a very long day!

Please pray for cooperation from Kya tomorrow and for God's guidance in everyone who will be working with her. Thank you so much for the many prayers! We appreciate all of your support and encouragement. Your prayers mean so much to us!

Kalee

Chicago or Bust!

We have been traveling for hours! Kya is making the trip pretty good, but she is definitely ready to get out of the car. We left at 9:25 a.m. and we are about 140 miles from Chicago. We have been driving for 11 hours now and it has been raining since Springfield, MO. We are glad that we went ahead and left this morning because they called from Chicago and they have more tests scheduled. They have a swallow test scheduled for 8:30 Wednesday morning to see how much her throat muscles and esophagus have been affected. They have an MRI they still have to schedule and it might be scheduled for tomorrow. I will give more testing information when we get it. Thank you for the many prayers and the tremendous support we have received from everyone. Please continue to pray for safe travel and for Kya's team of doctors! Thanks Again!

Kalee

RCCT Fundraiser for Cure JM

As many of you may know Lake and Kaysa are involved with the Red Carpet Community Theatre in Elk City. When they found out about Kya they wanted to do something to help out.

They have an acting troop that has been working on a play called 1000 Cranes. They will be performing it on Friday, March 27th at 7:30 p.m. at the Red Carpet Community Theatre. All proceeds will go to Cure JM Foundation in honor of Kya.

I think they said the play is only about 35 minutes long. They are going to try to have an auction or silent auction that night also to raise more money. I will post more information as I find it out.

Please mark your calendars and plan to attend or donate to this wonderful foundation. We know that it is with people like this that we will find a cure for Kya. Below is a little bit of information about the play.

A Thousand Cranes is based on the true story of Sadako, a young girl born in Hiroshima during World War II. When the play opens Sadako is training for a foot race with her best friend Kenji. Two years older than she, Kenji acts much like a brother and coach. Although he playfully teases Sadako about being as slow as a turtle, he assures her that she will win the upcoming race. Excited, Sadako rushes home to tell her parents of Kenji’s predicted outcome, but she must calm herself and behave with the proper respect before they will hear her news. That night, Sadako’s mother and father are preparing for Oban, the Japanese celebration of the ancestors. They explain to their daughter that this is a time to remember the ancestors who have died, and they will be lighting a special candle in remembrance of Oba chan, Sadako’s grandmother who was killed when the atomic bomb was dropped on Hiroshima. Though she was very young, Sadako remembers her grandmother, and the bomb. She wonders if her grandmother can see her when she runs. The next day, Sadako and Kenji are again training until Sadako trips and falls. She thinks she is okay but when she tries to stand she feels dizzy. Sadako’s parents take her to a doctor and she is diagnosed with "radiation sickness," or leukemia, a result of the radiation from the bombing. She wonders how she could be sick when the bomb was so very long ago. Sadako is too sick to run in the race, so Kenji comes to visit her in the hospital. He folds a gold paper crane for her as a gift and reminds her of the old Japanese myth that claims if a sick person folds 1,000 paper cranes the gods will grant her wish and make her healthy again. Hopeful, Sadako sets out on a new race to fold 1,000 cranes. Unfortunately, she becomes too sick to complete the task. Grandmother Oba chan comes as a spirit to lead Sadako to the home of the ancestors. There, Sadako meets many others who were harmed by the bomb and her Grandmother tells her she must stay there with her. Sadako pleads to go back and finish folding her cranes but Grandmother Oba chan tells her it is better to leave them for others to finish. Kenji and Sadako’s other classmates do finish Sadako’s cranes and make a wish of their own. In memory of Sadako, the children create a monument to their friend in Hiroshima Peace Park, inscribed with their common wish: "This is our cry, This is our prayer, Peace in the World."

Pretty Day to Play

Kya has had a pretty good day today. We have rounded up horses, went to the farm, and played outside. She sure is enjoying the weather and getting some fresh air. We are trying to let her burn her energy before our road trip! Please don't forget to pray for our trip to Chicago and the doctors that will be working with Kya.

Thank you for the many prayers and the continued support! We are blessed to have a support group of friends, family, and many prayer warriors. Thank you again for everything!

Lake, Kalee, Kaysa and Kya

March 7th Update

Sorry I haven't blogged but it has been a crazy week. We have been in Oklahoma City every day, but one. Kya has had a good Thursday and Friday. She has played very hard with Kaden and Grandma Trish. They have played at the river, outside, and at the Elk City Park. I think she may have played a little to hard, because she is very tired and cranky today. (And the Methotrexate hasn't even kicked in yet!) Her movement is not quite as easy today and her rash is pretty bright pink. I am not sure if this is from playing so hard or from lowering the steroid dose. I am really glad that we are going to see Dr. Pachman this week. This visit will really help ease our minds and confirm that we are doing everything possible for the best treatment for Kya!

We did find out yesterday that all of her enzymes and her aldolase are all in the normal range. However, the Aldolase is higher than it was last week. Please pray that it will continue to stay in the normal range even with the lowering of the oral steroids. This is a very important measure in the disease activity level.

Thank you for your prayers and support. Please continue to pray for a safe trip to Chicago and that God's will is done in her treatment. We are so blessed to have everyone that we do supporting us and praying for Kya's healing! Thank you again!

Kalee

A Quick Update

Kya had a good day Monday! She started her day with Physical and Occupational Therapy. Her therapist said that she could already see an improvement in her muscles. Then, she went to see Mavia and had an IV infusion. These are getting a little easier each time. If she would just stay a little calmer and breathe it would make the blood draw much easier. (But I am not one to talk. I would yell also if they put a needle in my chest every week!) After her treatment we went and had lunch. When we headed back to the hospital she said she was ready to go home. But, she did great for Dr. O'Neil! She was much improved in cooperating to do her strength testing. Dr. O'Neil was very happy with her progress and lowered her oral steroids by 1 ml this week. We are praying that she will continue to stay strong even with the lowering of the medicine. She also gets to keep her infusions spread to every week and a half for the next 3 weeks and then we are suppose to try every 2 weeks the next month! Please pray that she wil hold strong through all of the tapering. The quicker we can get her off the steroids the less side effects, but we also do not want a relapse.

Yesterday, Kya was definitely having a "steroid" day. She didn't know what she did or did not want and was very indecisive about everything! She stayed with Granda Denny part of the day then she went back to OKC with us. Kaysa had to go back and have her bumps cut off at Dr. Lehr's office. Kya was quick to let them know they were going to cut on sissy and not her. Dr. Lehr's staff was glad to see Kya and that she is doing better. We cannot thank Dr. Lehr enough for the quick diagnosis! If you have a skin problem I highly recommend him. He sees all ages and is very good at what he does!

After visiting Dr. Lehr we hurried back so Kaysa could play basketball. They had a great game last night. She scored 12 points, but more importantly they all played as a team! They really have a lot of fun and Mr. Danielson has done a great job teaching them the concept of the game. (By the way they won!) Kya decided she was done with us and was going to ride home with Grandma Trish. So we took Kaysa to eat at Pizza Hut because she had a Book It for reaching her reading goal last month! When we got home Kya was in a tutu having a tea party with all of her stuffed animals. She is definitely our prissy girl! We are just glad to see her feeling better and moving around so well.

We know that God is in complete control and has already performed many miracles in our lives. We just continue to pray for a cure in Kya's life and that it will come quickly. Thank you so much for all of your prayers and support. Please continue to pray as we travel to Chicago next week. Pray for the medical team and God's guidance in all that they do! Thank you once again for everything. Our lives have been changed by this and we have definitely realized the importance of friends, family and community support!