Quick Update

Just wanted to let you know we got back from Vanderbilt and James' counts looked good. They think his eardrum could have ruptured thus causing a fever. They gave him IV antibiotics and sent us on our way. If his fever spikes to higher than 101 we have to make another trip back. After James' nap this afternoon his fever is down(thanks to Tylenol). Please pray that he would feel better and no more fevers for the remainder of our trip.

Going to Vanderbilt

Just wanted to give you a quick update to pray-We are heading to Vanderbilt because James has a fever. He woke up this morning at 3:30am and hasn't been back to sleep. He is complaining of his ear hurting and can't seem to get comfortable. We called MDA and they advised us to go in and get blood work done. Please pray he is not neutropenic-we don't want to have to stay in the hospital. We will keep you updated.

In Tennessee...

First of all I hope everyone had a Merry Christmas! We made it to TN on Wednesday around noon. We decided that we would fly because back in October I found a good deal. The plane ride was certainly eventful. I had talked to my mom earlier that morning and the weather was overcast and very windy. We took off no problem but 30 minutes out of Nashville we hit some major turbulence. As a result James started throwing up. It was quite a scene, everyone close to use was passing bag their paper bags. Adrianne, on the other hand, thought is was a roller coaster ride and she was having a great time. Thank goodness Greg doesn't get motion sickness and he was able to take care of James. I wasn't doing so well thinking I was going to be sick too.

We get to my parents house and James gets sick again so we decide to take his temperature and you guessed it-he had fever! We called MDA and Dr Wells was the doctor on call! Since James wasn't acting like he felt bad(i.e. playing with his cousin) we could monitor him from home. Yesterday morning he woke up feeling great and no fever. Praise God! Please continue to pray for James-no infection, no fever!

James is having a great time with his cousins and Santa Claus was good to him. Thank you for your continued prayer an support!

These were presents they got from their Granny and Grandad before we left! James actually got the red one and Adrianne the pink one!

Christmas morning.....

Update from the clinic

Yesterday was our clinic visit and it went rather smoothly. They got James into his procedure fairly quickly which was great since he couldn't have anything to eat or drink. He had finished his 10 day round of antibiotic for his ear and when the doctor looked yesterday his right ear was still red. he decided to put him on Augmenton, which is a little stronger than amoxicillian. His counts came back OK, his hemoglobin and platelets were fine but his ANC was 1100. To me the ANC is a little borderline and given we are going out of town, we are going to play it safe and not attend church this weekend and the Christmas Eve service. That recommendation came from the nurse practitioner as well. James has a cough and I don't want it to go any further! Please continue to pray that he will be free from infection, that he will remain well during our trip and have no hospital visits! Also pray for us now because we are on the 2nd day of steroids!

James' Christmas party

James had his Christmas party today at Sonkids....This is what he had on before we left for school. At our house we haven't begun the potty training process but at school they let James sit and the potty and go. The last 2 times he has had an accident on his clothes while going to the potty so this is what he looked like when I got to his school.
Oh well, the bright yellow Nike shirt will be a part of our first Christmas pictures at school:) James had a great time at the party and I wanted to share some pictures with you...

Tis the season....

We continue to get excited about Christmas around the Ryan house. James is doing much better with his sleeping(thanks for your prayers) and he has almost completed his 10 days of antibiotic. His Christmas party at school is Wednesday and he will start steroids that day too. We will head to MDA on Thursday for his spinal tap with chemo, chemo through his port, antibiotic through his port, and continue with steroids and his daily dose of chemo. I am thankful that the steroids fall before Christmas so that they should be out of his system by the time we go to TN. Please continue to pray for his health. He has now developed a cough I think due to the drastic changes in our weather. Thank you so much for your continued faithfulness and support. Here are some pictures before church. If you wonder why they are off centered and not posed-its because my kids are the most uncooperative when it comes to taking their pictures.

I think Greg put in an earlier post about prayer time with James. Every time we start to pray he starts immediately saying "Get outta here kemia". So I have decided that this statement is going to be The Ryan family motto...

Get outta here leukemia,

Greg, Joy, James, and Adrianne

Checking in

It has been a full week since I have post so I wanted to let you know the latest on James. Since we have been home from the hospital and the clinic last week James has been more himself. he went back to school on Monday and had a great day. One thing that seems to be a reoccurring problem is his sleep pattern. Friday night and Sunday night he woke up screaming at 12am and would not go back to sleep in his bed. Greg and I decided to bring him to our room and it took him 30 minutes to get settled and go back to sleep. He continued to wake up every 2 hours and it would be another 30 minutes to get back to sleep.

Needless to say, Greg and I are exhausted and puzzled at what is causing this. This kind of behavior is expected with steroids but he doesn't start steroids until next week. Anyway when I got him on Sunday night, he was complaining that his ears were hurting. So Monday after school I took him to our pediatrician. He had a slight ear infection and Dr. Tony started him on antibiotics. Last night was some better, he woke up at 4:30 before he came and got in our bed.

Please pray that this will resolve itself. I also ask for prayers for next week. On Thursday(18th) we will head to the clinic for his LP with chemo, vincristine, and his antibiotic plus he will be starting steroids. Thank you for your continued prayer and support.

Back from the clinic

Today we headed to the clinic for a follow up visit after our stay in the hospital over the weekend. They drew his blood and everything came back great. His hemoglobin was up over 11 and his ANC was 3500. That means we get to go back on chemo. I know the chemo is keeping leukemia from coming back but it was sure nice to have a few nights off where we didn't have to worry if he ate or drank milk before bedtime. James will be all set to start back school on Monday and get back to our routine. Please pray that he is protected from any viruses or infections. Also please begin to pray for Christmas. We are going to TN for 8 days and we really want to stay out of the hospital! Thank you!

We're Home

Just wanted to let you all know that we got home last night. James was a champ throughout the entire hospital stay. He had to have a transfusion that lasted 4 hours and he never once tried to get out of bed. We follow up on Wednesday with his doctor and they will do more blood work. Thank you all for your prayers!

Transfusion Awaits

Well, we got a decent night's sleep with minimal interruption from the staff. Yet, it is quite interesting sharing a twin size bed with a child that moves around like the Tasmanian Devil! We received great news from the doctors this morning. They believe that we will likely go home this evening instead of tomorrow afternoon. James has been quite active and his white cell counts have improved. However, his red cell counts are still low requiring a 4-hour transfusion this early afternoon. James usually has a burst of energy and feels rejuvenated after a transfusion. It's perfect that this coincides with his nap (and that they give him Benadryl before!). We look forward to returning home, seeing Adrianne, and getting back to our "normal life." Thank you for praying for James' bottom and his ultimate healing. Each night we pray, "God, we ask for healing and say, 'Get out of here Leukemia!'"

A Quick update

Just wanted to let you know what is going to be happening over the next few days. The doctor came in and said that they would be giving James a medicine that boosts his white blood cells. He also said that his hemoglobin is borderline so they will wait until tomorrow's blood work to see if he needs a transfusion. James is also starting an anti fungal medication by mouth to try to get rid of the diaper rash. So we will be here today and tomorrow with the possibility of going home Monday morning. Thank you for your prayers.

In the Hospital

Last night after we came in and they did his blood work they decided to keep us. James' ANC went from 5000 to 500 which means he is neutropenic. His bottom is now at the point of bleeding when we change it but we haven't had any fever since being here. They have given his 2 doses of antibiotic just to be safe but all the doctors that have seen him things that it is viral. Depending on what the attending says today we may get to go home this afternoon. We will see! Please continue to pray for James-especially for his bottom!

In the ER

Yes that's right. We are at MDA right now at 9:55pm. James has had diarrhea all day long and his bottom is getting worse and worse. I thought he felt warm so I took his temperature and he had 101.2. They had us come here and we are waiting for him to get accessed so they can get his blood count. When they took his temperature here he didn't have any(of course:)

Please continue to pray for his bottom and that the diarrhea would stop. It is starting to look as bad as it did when we had so much trouble last year.

Happy Thanksgiving

We had a great time yesterday with Granny and Grandad and all the family. I wasn't very good about taking pictures but James and Adrianne had a blast.

Unfortunately James is battling something again. He had diarrhea 5 or 6 times yesterday and as a result his bottom is raw. Also this morning he got up with a cough and runny nose. I want to scream "Does it ever end?" I guess I know the answer to that question but it doesn't make it any less frustrating. Please pray for us as we manage whatever it is that he has picked up. Greg commented this morning at 6am when James woke up with poop-"Something always happens on a holiday." We will keep pressing on!

Hope your turkey day was great!

Gobble, Gobble, Gobble

Today James had his Thanksgiving feast at school. Everybody looked so cute and he had a great time.

Adrianne enjoying the festivities too!

Steroids, steroids, steroids

Can you believe it-it's that time again. James started steroids Wednesday and it wasn't to long in the dose that we started seeing the effects. Thursday morning James woke up at 3:45 am and this morning he woke up at 4:30 am. We have had bouts of crying on and off all morning long and he is distressed that he can't have milk. The virus that I wrote about a week or so ago has come back. He has had diarrhea for several days and that has resulted in a raw bottom. The doctors want him to stay off dairy until the diarrhea subsides. So we go back and forth constantly about him not being able to have milk. We really covet your prayers right now. Every day brings new battles. Every day is a constant reminder that he has this disease. I thought that by a year or so into treatment that this would get easier-but I have to say it is still heartbreaking and devastating. So we ask for your prayers as we walk this road and continue to press on.

Joy is Awesome

I wanted to take a moment to tell you how awesome my wife is. She spends her days juggling:

• being a full-time graduate student (studying, writing papers, reading),
• entertaining and enriching the lives of our two young children (reading the same book 5,000 times per day to Adrianne, reading with James, playing, holding, helping nurse hurts, a little tv ;-),
• daily managing our finances,
• managing James' daily/weekly/monthly chemotherapy as well as the majority of his hospital visits and all correspondence with his medical team,
• keeping our house picked up (she has a hard time believing this, but our babysitter commented that our house is almost always picked up),
• training several days per week for the Houston Half-Marathon, and
• always seeming to have a smile, hug, and kiss for me when I get home

I am certain that I am leaving some important aspect of Joy's many roles out the picture. The main point is that Joy is tremendous in her ability to manage so much. I am hopeful that she is able to focus more on what she is doing well (majority) rather than what she feels she is falling short of (minority). After looking at her many roles, I think that most would wonder, "What does Greg do?" I know that I can always encourage more, complain less, offer a helping hand when possible, and know that I am richly blessed by the wonderful woman God has given me. Joy is awesome!

A bunch of stuff!

I am going to stop apologizing every time I am on here for how long its been. That is the nature of our life right now. There is hardly a moment to get laundry done, prepare their meals, pay the bills, do schoolwork, etc.... But I did want to share what's been going on the last few weeks.

James continues to thrive in school. He absolutely loves his teachers and his classmates. He didn't get to go to school today because he has a virus. It's hard for me to remember that his immune system is still compromised even though his counts look good and he looks "normal." But, all in all, he is doing great and testing the limits more and more everyday!!! Here are a couple of pictures of James and Adrianne before church.

Greg and I had the opportunity to go to New Orleans with friends this weekend and let me tell you it was glorious! Eating, sleeping ,and relaxing-that was our weekend. We are so thankful to my mom who came out here and kept the kids and to everybody who helped her out.

Please pray for James as he goes to clinic next week and begins steroids. Continue to pray that his body would be free from infections and that he would get over this virus soon! Thank you!

Happy Halloween

Here are some pictures from our night. Abigail, our neighbor, came over to trick or treat with us. Our kids are at the age where it is almost impossible for them to sit still while I take a picture. Enjoy!

Light the Night-The Woodlands

Thank you to all our friends and family who came out and supported Team Ryan tonight for Light the Night. We appreciate you so much and words can't express what each of you mean to us. We also appreciate those who weren't able to make it but have been with us every step of the way. We are already looking forward to next year! Go Team Ryan!!!

Hope on Wheels

Here are some pictures from the evening. The first 2 are of a banner that they are sending to Washington DC.

Saturday night we participated in the Light the Night Walk in Houston. It was such an amazing night-full of emotion. We are super excited for the Light the Night Walk coming up in The Woodlands. Thank you to the Leukemia Lymphoma Society for letting James and our family be a part of the Hyundai Hope on Wheels program.

Clarification

Just wanted to clarify about Light the Night. There are 2 walks- one downtown and one in the Woodlands. We will be going downtown for the Hyundai "Hope on Wheels" program but will be walking with Team Ryan on the 26th in the Woodlands. It's not to late to sign up with our team!!!!

http://teams.lightthenight.org/TeamRyan_MarketStreet

Business as Usual

James has had a great couple weeks. Since we have been back home, we tried to get back into a routine. School has been awesome for him. He loves it and talks non stop about who is there and what they do. He is,however, having some troubles at home. He is constantly pushing Adrianne down, trying to tackle her, knocking her over, and hitting her. He has spent so much time in time out! He is also conditioned to answer yes sir when you ask him something. So I will say "James are you suppose to hit your sister" His response-Yes Sir. Greg and I have to keep reminding ourselves that its part of his development and also part of having a sibling so close in age. I guess it is nice to see some normal behaviors around here.

We have a special activity coming up. James has been picked by the Leukemia Lymphoma Society to be one of the kids recognized at the Light the Night walk in Houston. Hyundai does a special program where they recognize kids who have survived cancer. He gets to put his hand print on a Sante Fe along with the other kids picked and it will be on display for the month of November. This event was suppose to happen in the Woodlands but because of the hurricane it got moved to downtown.

Things are moving along with my training. I ran the Susan B Komen 5K this weekend and will pick back up with Team in Training and run 8 miles on Saturday.

Thanks so much for keeping up with us. Please continue to pray for James that he would be free from fevers and infections.

Home at Last

We finally got power back on Friday afternoon around 4:30. We decided to stay one more night because we had already planned to go to the Cy Fair homecoming game. Even though things got hard at times we had an awesome time at our family's house. Don, Julie, Wesley, Allie, and Tanner-words cannot express how grateful we are to you. We had so much fun amidst all the homecoming activities and your busy fun filled lives. James loves watching Wesley play football and now any time any football is on whether its college or pro James say " Go Wesley, Go Bobcats"!

We have settled back into our house and are looking forward to getting back into a routine. James started school back today and although apprehensive at first, he had a good day. He also finished up his 5 days of steroids yesterday and he seems to be doing well. Continue to pray for him--flu season is around the corner and we want to be free of any sickness.

Enjoy these pictures from our time last week.

Adrianne was mad she had to take a nap so she decided to pull everything she could get her hands on into the pack and play with her!

Healthy and Together

Praise God that we had a great visit to MD Anderson yesterday. James put on his best "I ain't sick!" persona and presented as a happy and healthy 2 year old. His doctor looked at him as he was pounding on a play piano and noted through keen observation that, "Well, he seems like he feels good." All of his examinations and blood work looked normal and his antibiotic seemed to be helping tremendously. I believe that the love of our family and the respite provided by AC has made the biggest difference by far. While we are displaced and referred to as "refugees" by my brother, we have felt comfortable and had fun during this challenging time. As we have stayed in contact with our neighbors, we have found that power has not yet been restored and will likely be restored by next Thursday at the latest. Pray for sooner! I had a chance to go back to the neighborhood a couple of days ago and it seemed more together with a stronger sense of community than ever before. It's been awesome to see the kindness of neighbors and how people have banded together to make the best of an unfortunate situation. We thank you for your prayer and support and hope to be back in our home very soon!

Ike Hath no Power

Ike has absolutely wrecked devastation across SE Texas. It's been horrible to see the extent of the damage and the people that are displaced. I am sure that many of you have seen the horrible conditions and damage in Galveston and surrounding areas. Our home, The Woodlands, was hit quite hard as the eye of the Ike passed right over us bringing over two hours of 100 mph winds. As the name implies, The Woodlands, is full of dense forests and preserves, making these trees weapons against homes and property. Our home was hit by a tree, but we were fortunate to only have a softball size hole in the roof above our attached garage. The morning after the storm passed with continued pounding rain, it was heartwarming to see all the neighbors banding together with chainsaws in hand, making their way around the neighborhood to cut loose debris blocking the road or obstructing people's ability to get in or out of their home.

I say we were fortunate because there were homes virtually split in half by large trees. In my immediate neighborhood, there were no serious injuries. Just yesterday, as the temperature began to rise, we noticed that James seemed lethargic more than expected. His temperature was close to 101 for almost an hour. We attempted to call MD Anderson and found that they were without power, and we were instructed to go to our local ER. We showed up to Chris and Stephanie's house to see if they could keep Adrianne (as phones have not worked). Thankfully they were home and without incident. As we approached the ER, we were screened before entering as the hospital is working on generators. After blood draws, examination, and x-rays, we found that James has pneumonia. Perfect timing, right. The doctor called MD Anderson and together they said that we had to make sure James slept in AC because the heat and humidity of no power could significantly worsen his illness. Right after this diagnosis and advice, my brother Don called and said that they have power and plenty of AC. God is so good and helped provide respite for us once again. When we arrive home to pack, we found that our amazing neighbors had cut down the tree resting on our roof dragged it away. I was able to put a tarp over the hole and will await for the insurance adjuster to come in the coming weeks to months.

Please pray for James and his well-being. Our trusted friends and doctors at MD Anderson are out of commission right now and we are not sure when they will be available. James is taking an antibiotic, but please pray he is able to fight off this illness. We are thankful for our family and their willingness to house us as long as needed. We are expected to be without power for up to 3 weeks in The Woodlands. Please continue to pray for all of those impacted by Ike. Grocery stores and gas stations have lines that can take hours to get through. One friend noted that this was the 3rd worst storm (in terms of damages and storm severity) in US history. We will keep you updated on James' health. Love, Greg and Joy

James' first day of school

It was an emotional day on so many levels. James did great today. I found out from his teachers that he had moments of crying but that was true of others in his class. I was a little nervous about sending him because on Sunday he developed a runny nose due to allergies. As a result he didn't sleep very well so I really didn't know what to expect. But all in all it was a good first day. I have to say we missed him today even though when I asked Adrianne if she wanted to go get her brother she said "no". I think she enjoyed having her mom all to herself! Enjoy the pictures from the first day of school and from Adrianne's gymnastics.

A Week in Review

We had a great week with all the cousins in the house. We celebrated Adrianne's birthday with friends and family, we went to the zoo, and we even braved the outlet mall. Needless to say we all were exhausted but we had a great time and James is missing all his cousins. Next week is a big week-James starts school!!! Pray that he would be protected from any sickness!