History

Tuesday, November 24, 2009 1:46 PM CST

Several folks have mentioned that they have checked the website for an update and were sad to see that I had not updated recently. I continue to be amazed at the number of “unknown” folks out there who have followed Henry’s journey and are still interested in us. We do feel blessed.
We are all doing great. I could say normal, but really, that isn’t so. A wise friend told me that “normal” was a setting on the washing machine. Yep, she is right. When I look around me, I see those who continue to be diagnosed with cancer or suffer the return of cancer. I see people losing their homes or jobs or couples divorcing. Would you say that their lives are normal? So really, we aren’t “getting back to normal”, but we have enjoyed the relief of some of the pressure that we bore for so many years.
Our lives have been changed by our experience. For years, I asked God “why?” and now I am thanking him for choosing our family. It took a while to get over that anger and I am not sure that if Henry didn’t find a match and didn’t make it, that I would have had the change of heart. The outcome is how God planned it, no matter the guilt that we sometimes feel. We embrace it and continue to thank Him every chance we get.
Finally, school is not a struggle for Henry. He is in fourth grade and his teacher has taught many of his cousins. She is special and understands him and his history. He continues to have anxiety at bedtime, which I hear is common after his experience. We have removed the knives that he had stored under his bed, but we have left up the signs leading to his room that say “danger ahead”. He is so energetic and happy. He knows that he is a blessed child.
His brothers continue to be afraid when he leaves home. Samuel cried when Henry left for his annual hunting trip to Texas. Harper worships Henry and we hope that Henry continues to make choices that deem him worthy of the brotherly praise.
Patrick and I continue to focus on our relationship. Truly, the burden of Henry’s illness for 7 years was trying for us. We thank God for his guidance that led us together rather than apart as is the case for many. We have realized that the growth of our relationship has helped our children and build the foundation that we all need to move forward. This has been a great year for us.
We were in Ann Arbor in August and saw the awesome Dr. Levine and Deb, our favorite nurse practitioner. Henry had grown 2 inches and gained about 5 pounds. The graft versus host disease (GVHD) has been “in check” for some time, so they decided to begin the final wean from the anti-rejection medication. He now takes it every other night and has had no flare up of the GVHD. Because he is still on this medication, he has to take another medication twice daily. I load two pill boxes each weekend and he is responsible for remembering to take it. He has had the flu and H1N1 immunization (as have we), so we are hoping for a healthy winter.
His next appointment in Ann Arbor is May 2010. He will have the annual work up on all of the organs and hopefully (say lots of prayers) he will be weaned from all medication. This child has had to take a shot or oral medication just about his entire life, so this will be a milestone in his recovery.
I hope you enjoy the photos from the hunting trip. It is a great time for him to bond with his Poppy. Samuel loves Poppy, but said he wasn’t sad that they weren’t taking him. He has defined himself a naturist, but admits he can’t wait to get in some target practice with Poppy. Harper believes that he should have gone hunting and must be reminded often that he is a four year old. Luckily, his brothers do that job for me!
Some of you may remember that we spent last Thanksgiving with the Baxters. This year, they will be here in Radford along with our family (including Beth and Callie) to celebrate again. We are honored to also have Russ’ mother and father here from Arizona. We have never met and I cannot wait to be able to thank them. I am sure that they know it, but I want to tell them that because they raised a loving, caring, and giving child, that we now have the opportunity to do the same.
We hope that you have wonderful Thanksgiving holiday and that you pause to reflect on how lucky you are to be able to enjoy it.
The Moore Family

Saturday, May 16, 2009 11:28 AM CDT

Two years ago today, Henry had his successful bone marrow transplant. Happy Transplant Birthday Henry! Our family has been anticipating this weekend, since tradition for bone marrow transplant families calls for a birthday celebration.

Last night, Henry requested to go to dinner at Sal's Italian Restaurant here in Radford. I said, "Why there?" and he said that he wanted to eat fried calamari. Yes his taste buds are developing past the GOLD STANDARD of chicken tenders and french fries.

He is getting a Playstation 3 today. He has wanted one for over a year, and we feel that he deserves one. He has improved so much at school- academically and emotionally. He is also working really hard on a song that he will play at his guitar recital on the 31st.

Tomorrow our family will attend the Learn Live Hope Event at Hendrick Motorsports where another marrow donor/recipient will meet. I can't believe that we have already known Russ and his family for a year. We plan to hint that next year will be a great time for Kim Jones to meet her bone marrow donor. She is a rising 7th grader from Radford who has just received a bone marrow transplant at Duke for aplastic anemia. Her donor cells haven't engrafted yet -and we pray that her counts will continue to come up over the next week.

www.caringbridge.org/visit/kimjones

I have saved the sad news for last. Sable, Henry's beloved cat for the last 7 years, died a few weeks ago. She was his rock-always willing to cuddle with him when he was sick. (Always willing to lick the salt off of his potato chips when Mom wasn't looking.) She was a great cat for our family and we have all had a difficult time with this loss. Dr. Emily Lawrence and the staff at West End Animal Clinic treated our family with extra special care since this is where Henry selected and adopted her. Dr. Lawrence was with us as we surrounded Sable when she died from kidney failure (kidney cancer). Before she died, We allowed Henry to have some private time with Sable and told him that she could take special messages to his friends and family in heaven. During that time, he asked Dr. Lawrence if she had done everything possible to save Sable...would a bone marrow transplant save Sable...now we know why Dr. Lawrence had tears when we returned to the room. After she died, I said, "I bet she hopped right into Nana's lap. Nana needs a lap kitty since she's in a wheelchair." Henry quickly responded..."Mom, everybody in heaven can walk. There are no wheelchairs in heaven." Wow, that kid has a lot of depth. We have so much more to learn from him.

Thanks Russ Baxter. Not just for your marrow, but for the opportunity to share many more memories with Henry.

Sincerely, Angela and Patrick

Monday, April 6, 2009 6:06 AM CDT

Two years ago today, Henry had his first bone marrow transplant. Today, we especially remember Russ for being such a wonderful donor, the staff at University of Michigan who took such great care of him/us while we were there, and all of you who prayed and watched after things back here in Radford. We also thank God for his continued blessings to our family.

We are heading to Alabama on Wednesday for Spring Break with the kids. We are excited to experience the annual Easter Egg Hunt and the boys are constantly arguing about who will find the prize egg!

I will update with photos later.

Angela

Monday, April 6, 2009 6:06 AM CDT

Wednesday, March 18, 2009 10:18 PM CDT

Henry had a great appointment. He has grown 3 inches and gained almost 10 pounds since his transplant. The eye appointment on Monday was rather long, but there was no graft versus host disease found! I didn’t get a formal report from the echocardiogram or the pulmonary function tests, but I can’t imagine that they would show anything abnormal. Dr. Levine thought that Henry was doing great, but still isn’t ready to take him off of all of the medications. Henry is still showing signs of graft versus host disease in the mouth, which means that Russ’ cells are still attacking Henry’s cells.

This is presenting as dryness and flaking on the lips and some changes inside the mouth. Henry is lucky, because it is very mild and graft versus host disease can be deadly. It can cause nausea and poor appetite, hepatitis and problems with skin tightening up so much that a person cannot bend their joints. Graft versus host disease can be present for up to three years after transplant. Eventually, it “dies out” and the cells just give up fighting. (Russ is the meekest person I know-so don’t judge him by his bone marrow!) Henry has had no new problems since his last appointment, so Dr. Levine thinks it is best to just keep everything the same. So, Henry will keep taking Penicillin twice daily, Zyrtec and Tacrolimus(to help with the graft versus host disease) once daily. The Tacrolimus suppresses the immune system, which makes Henry susceptible to certain infections. Due to this, he still needs to take the Penicillin.

On to the blood counts…

White Blood Count 4.7 normal range is 4.5-13.5
Platelets 145,000 normal range is 150,000-450,000
Absolute Neutrophil Count 1600 normal range is 1800-10,100

I have to admit that I was a little disappointed with the counts. I was also a little upset when I learned that Henry will need to be seen again in just 4 months. I was hoping for a 6 month break. I am sure that I may seem ungrateful, but I am being honest.

We had a great time with the Baxters. They took us out for great meals and served as wonderful hosts while we were in Ann Arbor. I have photos, but I am having trouble with getting them on the caring bridge site. Visit the Flickr site for some of the photos. I will add more, when I get them from Connie.

If you are interested in walking with our family on April 4, 2009 in the Walk for Wishes, email me. It is from Roanoke Memorial hospital up to the Mill Mountain Star. Lunch is served after the walk. We will try to raise money for the Make a Wish Foundation because we know how wonderful they treat children who have suffered.

Thanks for checking up on Henry. He is a very happy boy today, because his Mom caught his gerbil that had been missing since Sunday morning. Here is the catch-now he has two gerbils-because his Daddy went out on Tuesday and bought a replacement gerbil. Okay, here is the real kicker….Sam and Harper each have a gerbil, too.

Oh what fun! Angela

Sunday, March 15, 2009 5:04 PM CDT

Hello everyone!

Henry and I are heading up to Michigan on Monday the 16th. We will stay with the Baxters which will be so much fun. Henry has one appointment in the afternoon on the 16th and has several appointments on St. Patrick's Day. He is so excited about this and we have lots of treats to take the kids who are in the infusion room at the Cancer Center on Tuesday. His appointments will be a comprehensive check on the eyes, lungs, heart, blood-all routine. Of course, we will see our favorite physician and nurse practitioner. I will update you as soon as we get back home.

This week marks 9 years ago that Henry was diagnosed and 2 years ago that he began the journey into the transplant process. It has been a great week of remembering for our family.

I hadn't logged on to the web page since my last update and we cried when we read the guestbook entry from Kishta-Henry's primary nurse during his transplants. What a surprise-we miss her. We must mention her name in our house about every week. I hope that we get to see her during our visit too.

We are so lucky to have the Baxters to welcome us into their home each time we visit Ann Arbor. They rearrange their schedules to pick us up and deliver us to the airport, and to take us to the hospital for the appointments. We are excited to spend time with their family and hope to have some fun photos to post when we return.

Love, Angela and family

Tuesday, February 10, 2009 8:59 PM CST

The National Marrow Donor Program is offering free testing again! We know that many of you have been tested, but if you will please...copy and paste the following information into an email to those in your addressbook, we would appreciate it.

You can save a life-by being a marrow donor. Go to

http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html

to request a free kit to be mailed to you. Use promo code marrow 91 and complete the consent form. The kit will be mailed to your home. You will do your own cheek swabs and return the test in a postage paid envelope.

You could be someone's match. Please take the time to consider joining the registry!

Thanks from the Moore's

P. S. We raised just over $1200 for the local American Red Cross. Anne Vaughan has graciously agreed to make the raffle and jewelry party an annual event. We appreciate all who donated to this special organization.

More photos coming soon

Monday, January 26, 2009 7:18 AM CST

I am hosting an open house on Sunday, February 1, 2009 from 1 to 4 pm. Anne Vaughan will be here with jewelry that she has designed. The jewelry that you purchase on Sunday will be availabe to take with you at that time.

Please visit her website for more photos of her work. www.annevaughandesigns.com

The jewelry pictured above and on the photos page is valued at just over $200. I am selling raffle tickets for $5 each or 3 for $12. Please send checks made to the American Red Cross and I will send you the raffle stubs. Henry will draw for the winner during the open house on Sunday. Raffle tickets will be available until the time of the drawing.

Anne's jewelry is unique and earrings can be purchased for as low as $10! I am excited about raising money for the Red Cross as they so often hosted bone marrow drives to help Henry and others find a donor.

I hope to see you on Sunday! Angela

403 Harvey Street
Radford, VA 24141

Sunday, January 11, 2009 7:38 PM CST

Happy 9th birthday to Patrick Henry Moore! We celebrated Patrick's **th birthday on Thursday, January 8th and then today celebrated Henry's birthday. We did not plan a party for Henry, but instead had brunch with his Godparents and a family dinner with the Dalton's tonight. Henry was blessed with wonderful presents and a Pokeman cake. He has had a great day. His birthday treat will be a couple of days of skiing next week. His most exciting present was his new haircut-buzz cut I should say!

I will be having an open house for the public from 1pm to 4pm on Sunday, February 1, 2009. Anne Vaughan will be my guest with her jewelry for sale and my host benefits will go to the American Red Cross. Also, Anne has donated a beautiful pearl necklace with matching earrings and bracelet (total value of $233)to this cause and I will be selling raffle tickets for $5. We will have a drawing on the 1st and you do not need to be present to win. Please contact me by phone or email if you are interested in a raffle ticket. Anne creates her own jewelry and the pieces are very reasonably priced. Feel free to send your spouse to pick out a Valentine's present or come by yourself. I am excited to be raising money for an organization that has supported us through Henry's illness.

Henry's next appointment in Michigan is March 17th, 2009. He is doing great and enjoying playing basketball. I loaded photos on this page and also on the Flickr site.

Happy New Year!
Angela and Family

Friday, December 26, 2008 10:35 AM CST

Our 2008 family update:

In January, we enjoyed our first family ski trip. We mourned the death of a very dear 7 Mott friend, Justin, who had his transplant on the same day as Henry. And, we finally received a letter from Henry’s bone marrow donor.

February took our entire family to Los Angeles, CA for Henry’s Make A Wish trip to meet Kobe Bryant and watch the LA Lakers defeat the Dallas Mavericks in double overtime. We took a side trip to Disneyland while there and had a great time.

In March, the Red Cross in Blacksburg hosted "Henry’s Donor Days." Many of you participated in donating blood, platelets and double red cells in his honor, and we appreciate you!

The flu in April put Henry into the hospital. It was a short stay and he recovered fast enough to walk in the Walk for Wishes benefit for the Make A Wish Foundation of VA. With your help, we were able to raise over $500 for them.

May would be the month that would forever change our lives. We finally were able to meet and thank the man who twice donated marrow to save Henry. He and his family are now our family-we included them in our holiday card photo this year. The transplant Celebration at the end of May still overwhelms us when we think about it. The Thelens and Morgans from 7 Mott traveled to Virginia for this special event. Thanks to everyone who came out to be with us that day.

June took us to the beautiful Gulf Coast to relax and visit with family and friends.

July gave the parents a long over-due and very much needed vacation without the kids.

In August, we welcomed a new member to our family. Baxter Levine Gehrz Amacher, a Cavalier King Charles Spaniel. Yes, we did get a little carried away with the name, but it is nice to have a constant reminder of those who helped to keep us as a family of five.

September took us to Alabama for Angela’s 20 year high school reunion. It was great to connect with those classmates who supported our family with bone marrow drives and friendship over the last 8 years. Henry also broke his arm and was in a cast for 6 weeks, which meant no football!

October– Henry and Samuel dressed as Star Wars characters and Harper dressed as Wall-E for Halloween.

Henry and Poppy hunted in Texas in November and he killed and 8 point buck. It will be hanging on a wall in the house real soon, if you want to see it... Also, The Levine’s visited us to see the Virginia Tech vs. UVA game. They hail from UVA and really enjoyed the exciting game.

December has been full of fun for us as the boys are so excited about Santa. We decorated a gingerbread house, saw the Nutcracker, and Santa himself. Dec. 9th, my mother’s husband of 20 years passed away from complications from liver cancer.

It has been a great year of getting back to being the Moore family. We love each other and you, too.

Patrick, Angela, Henry, Samuel, and Harper Gray

P.S. Our life does continue to revolve around the needs of Henry after his transplant. This year, Samuel and Harper have enjoyed many benefits from all of the organizations that honored Henry for his bravery during his transplant. Samuel continues to enjoy playing soccer and learning piano. He is a talented artist with a special interest in origami. He is the “official” owner of Baxter and loves to be called his Dad.
Harper Gray attends First Christian Preschool, where both his brothers are alumni. He loves to be involved in anything that his brothers are doing. They are great big brothers to him , as least 50f the time! A great description for Harper is “love bug”.

Saturday, November 22, 2008 3:34 PM CST

We had a great visit to Michigan last weekend. Russ and Connie and their girls, Emily and Sarah, welcomed us into their beautiful home in Canton. We decided to have a Thanksgiving dinner together, which was prepared by Connie. It was so delicious! We were able to share many of the untold stories of our lives for the seven years prior to Henry’s transplant. It becomes more evident each time that we speak, that the timing in the selection of Russ as Henry’s donor, was always in God’s grand plan. We thank God for him and his family.
The weather in Michigan was cold, of course. Snow flurries blew all weekend and the temperatures were in the teens at night. Russ took Monday and Tuesday off from work to spend time with us and we enjoyed a trip to the Hands on Museum in Ann Arbor. We also stopped to eat at several of our favorite restaurants there. It made me miss Ann Arbor, though only until I was chilled to the bone by the cold weather .
On to the appointment…Russ visited the Cancer Center with us and was able to meet many of the staff that Henry sees during each of the visits. Each of them greeted him with kindness and always ended with a sincere Thank You for his gift to Henry. The neatest was that he met the transplant coordinators. They were in direct contact with Russ’s designated representative. They mentioned that Russ and Henry’s photos were recently featured at the National Marrow Donor Program’s annual meeting.

I am happy to report that Henry had the best appointment. His lung function test showed major improvement since the visit three months ago. For the first time, all of his blood counts were inside the normal range. His white count was the highest it has ever been, even before the transplant. Normally, one wouldn’t get excited about a high white count, because that would mean the body was fighting an infection. That isn’t the case for Henry. His marrow has finally found the overdrive gear! For everyone keeping close tabs, here are the formal results:

White Blood Count 8.2 normal range is 4.5 to 13.5
Hemoglobin 13.7 normal range is 12.5 to 16.0
Platelets 150 normal range is 150 to 450
Absolute Neutrophil Count 4.0 normal range is 1.8 to 10.1

I was most excited about the white count. I was so nervous that it would never get high after the transplant and Dr. Levine kept telling me not to worry. I am going to relax a little now-after all, we did trek all the way to Michigan to have him as Henry‘s transplant doctor!

We are excited about Christmas as are the boys. They are old enough now to be tempted by the commercials AND to make out their lists. We will be staying home for the holidays and enjoying our time together as one happy family.

We hope that your holidays give you everything you wish for~

The Moore’s

P. S. please visit the Flickr link to see photos from our recent visit to MI.

Thursday, November 6, 2008 9:28 PM CST

His dream came true. He killed an 8 point buck yesterday evening, after missing one on the morning hunt that day. I don’t have all of the details, but wanted to share the news and the photos.
He loves the hunting lodge, especially, because he has met a new friend, Logan. They have been playing outside and playing pool after Logan gets home from school. Logan’s family runs the Hunting Lodge there in Eldorado, TX.
Henry did great on the plane trip. He wasn’t a bit nervous and the lady sitting next to him told Poppy that she now knows all about Henry. She told Poppy that she even knew that he had a new dog named after his donor. Henry must have talked her ears off. He isn’t one to readily share his story…must have been nervous energy. I hope that she wasn’t planning on sleeping during that 3 hour flight!
I am sure that I will have more detailed information when he returns home on Sunday and I will be sure to share that with you.
Please pray for a safe flight home on Sunday.
Angela

Sunday, October 19, 2008 8:35 PM CDT

1 year and 5 months after the second transplant

Life is good. Henry's broken bone healed great and the cast is off. He is wearing a brace on it for P. E. class and playing in the backyard. The doctor would not release him to return to the football field this season. He is itching for competitive play and will be ready for basketball season later this fall.

Henry's hair is growing back in the crown of his head and his skin looks great. He did have a flare up of his Graft Versus Host Disease (of the skin) under the cast. He kept asking me if it was ringworm. I am not sure if he was teased about it or if he has already developed some diagnostic skills, but it responded to the GVHD creams, so we know it wasn't ringworm! That is all that we need in this household.

The boys are excited about Halloween and have had their costumes for over a month now. Henry and Samuel will be some sort of character from Star Wars and Harper will be Bozo the Clown. Harper really wants to be Wall-E, but we will have to make his costume, since those costumes are in high demand this year. The Bozo is a back-up costume in case our creative energies fail to flow before the big day.

As you can see from the new photos, we celebrated the marriage of Anna Kate Ellerman this weekend. She visited Henry many times at Duke and also in Michigan and is a wonderful friend. The wedding was beautiful and the weather and the pretty fall leaves reminded us of our wedding. Patrick and I celebrated our 12 year anniversary today with our boys. We went to see Beauty and the Beast at the Barter Theatre in Abingdon, VA. It was a great show and the boys were entranced during the whole 2 hours.

In about 2 weeks, Henry is going to west Texas on a hunting trip with Poppy. He will fly out there (alone) and meet up with Poppy and Uncle Jason and they will hunt for a big buck for 4 or 5 days. The folks that run the hunting reserve guarantee that a buck will be killed, so check back here in mid November to see if he was lucky. He is so excited about this trip. Every week, he writes a note about it to his Poppy. Some of you may remember that he missed the trip last year because his lungs were not doing well. (The lungs are great now!)

Also in November, we head back to Michigan for an appointment and we will be staying with the Baxter's. I will update this page with information about that appointment soon after November 18th.

Thanks for continuing to check on Henry. He is a miracle.

Angela, Patrick, and boys

Sunday, September 21, 2008 4:24 PM CDT

Henry is doing great with the cast. It is maroon and his father has painted it with orange VT. He misses guitar and football and is constantly practicing running and sprinting in the back yard. I am not sure that he will be able to play football when the cast is off. He goes back to get the it off in 2 more weeks.

For all of you caringbridge followers, I apologize for the lengthy hiatus in my entries. We have had a fun summer, much different than the summer of 2007. It has quickly passed and the boys are back in school. My goal is to update this webpage on a quarterly basis. Should anything arise in the meantime, of course, I will update you first, here on this page. We are desperate to get back to a normal family life and that is keeping me very busy. We couldn’t have made it through the transplant process without all of you, so I respect and will honor your need for updates on Henry.

This is the update that I had started to type, just before Henry broke his arm….

Summer began with the Transplant Party, which was the greatest . I haven’t yet sent out proper thank you notes, but it was only a success because of you, our wonderful friends who volunteered to help out. Russ and his family were overwhelmed by your support for all of us. The weekend after the party, we traveled to Charlotte to celebrate Courtney (with the Hendrick Marrow Program) and Caleb Hurd’s birthday party at a fun bowling alley. They didn’t want gifts, but we all pitched in to raise money to show newly released movies on the transplant unit at Duke. It was a success and we had a great time-the boys love Caleb as much as they love Courtney.
From Charlotte, we drove about 10 hours to the beautiful Gulf Coast of Alabama. With the bikes on the van and it packed tightly, I am sure that we looked pretty funny. I should have known to avoid the bathrooms in gas stations, but when you have three boys, you stop when they ask. This resulted in Henry reading aloud certain messages that were posted behind the toilets and then asking me to explain them. I wanted to just turn around and go back home then, but we had already driven over half the trip. We spent two weeks camping in my Dad’s camper which reminded me of camping with my family as a young girl. The boys rode bikes, swam in the pool, hunted for crabs on the beach at night, played putt-putt, and we all ate delicious southern fried seafood. Patrick was able to travel to be with us over Father’s Day weekend and the boys surprised him with a new bike. Radford has wonderful biking trails and we will get biking again after Henry gets his cast removed.

We returned home just in time to celebrate the Fourth of July with wonderful friends. The boys completed tennis camp at VT, golf camp at the local River Course, basketball camp at RU, and art and drama camp at the Music Comes to Town Studio here in Radford. They had a great summer! Henry has so much endurance-you would never know that he has had a transplant.

In July, Patrick and I took a much need vacation without the children. Henry went to Poppy’s house, Harper went to Gran’s house, and Samuel went to Sarasota Beach, FL with Uncle John and Auntie Beth. I drove to AL to deliver the children and while there, Henry and I were able to watch our local Zeke Shaffer play in the USGA Junior Amateur golf tournament at the prestigious Shoal Creek Golf club in Birmingham. Henry had just finished golf camp where Zeke was a helper and an idol to the younger children. It was a wonderful experience for us and Henry did bring Zeke at streak of good luck. Our vacation was relaxing and the boys probably had more fun than we did.

August took us back to Michigan for a scheduled appointment. Back in June, I had noticed a bald spot in the crown of Henry’s head and later found another one on the side of his head. I immediately took him to Dr. Gehrz and he consulted with Dr. Levine and Henry was placed on a course of steroids and his anti-rejection medication was increased. I was anxious for the appointment so that he could see a dermatologist to see if the hair loss was a result of graft versus host disease. The dermatologist said is was alopecia areata and that a skin biopsy would be the best way to tell if it was GVHD. The conservative treatment would be a steroid foam for the scalp-2 weeks on, 2 weeks off. So far, it appears to be working. His blood counts were still too low for me to get completely comfortable.

White Blood Count 4.0 (normal is 4.5-13.5)
Hemoglobin 12.7 (normal is 12.5-16.0)
Platelets 135,000 (normal is 150,000- 450,000)
Absolute Neutrophil Count 1300 ( normal is 1800 -10,100)

I frowned at those numbers when Dr. Levine showed them to me. He again told me to relax and that he was not concerned. By now, I trust that all is okay when he says that. I hate to sound like I am complaining, but after all Henry has been through, I just hoped that he would be in the normal range of neutrophils, well all of the blood counts, by now. Patience….I wish I had more. Henry is still taking many medications, which he does like a pro and without complaints. He has complete two rounds of his immunizations. His next dose is sometime next year, with exception of the flu shot this fall.

The neat thing about the trip to Michigan was that we were able to stay with Russ and Connie. Russ very graciously picked me and Henry up (and returned us) at the Detroit airport at a very late and inconvenient hour. Connie took us to his appointment the next day. She was amazed at how brave Henry was with getting stuck with a needle for his blood work. Henry took her to his old room on 7 Mott and she was able to meet many of our favorites there. Too bad, nurse Kishta who bore all of his demands for 3 months, is no longer there for us to see. Emily and Sarah enjoyed Henry so much that they cried when we left. Our families are truly connected. In fact, they have invited us to stay in their beautiful home during Henry’s next visit in November. We will have a Thanksgiving meal together. We have much to be thankful for, right?

Henry is in third grade and Samuel is in first grade. I have posted photos of them with their teachers-click view photos link. They are enjoying it so much. Harper is in preschool and has a teacher that taught both Henry and Samuel. Samuel is taking piano lessons and is playing soccer. I am back to working a few hours each week and definitely need to stay focused to keep it all going.

Recently, Henry has had a recurrent stye in one eye. His lips look yucky with the GVHD, but a dose of the gel on the lips cures that for a few days. I have to constantly watch him, as I did for the first seven years of his life. I get worried when I see that he has trouble fighting off something so basic as a stye, but I still am waiting for the bottom to fall out on us at any time. I will be glad to eventually grow out of this.

Big news, we have a new puppy. We named him Baxter after Russ and his family. It is a Cavalier King Charles Spaniel and he is very sweet. (Click view photos link for a photo.) We decided to get a new dog after Henry’s guinea pig pookie died while we were on vacation and our two yorkies went to live in a old aged home for dogs. They were just too old and frail to live happily as indoor pets.

Our family is very excited to welcome the Levine’s to Radford for the UVA vs. Virginia Tech game on Thanksgiving weekend. Dr. Levine is originally from Virginia and attended UVA and will bring his wife and 4 boys to see a game in Blacksburg. We will have a tailgate party before the game. Please contact me and I will give you details on the location if you are interested in meeting them.

The holidays are approaching and I thought that you may want to include the Baxter’s when sending out your annual card. Their address:
Russ, Connie, Emily, and Sarah Baxter
6809 Kings Mill Drive
Canton, MI 48187

Please feel free to email us on the address below if you need to between my updates.

Love, Angela and family

Sunday, September 7, 2008 9:57 PM CDT

Angela has been working on a lengthy update that covered the entire summer and back to school. Well, Henry broke him arm this evening, so I thought I would write a quick update to let you know how he is doing. Henry and the other boys were playing with a neighbor and Henry decided to hang from a tree. When he let go, he fell on his wrist. We went to the ER tonight, and he had his wrist splinted. Tomorrow we will go to the orthopedic doctor for a cast. He is very upset. Not about the cast, but because he will miss some or all of his "Mite" league football season. He loves football, and has really put his all in to it. I am cetain he will beg the doctor to let him play with a cast.

Angela will update soon. -Patrick

Monday, June 2, 2008 3:46 AM CDT

This is a long entry, but hopefully enlightening.

In March of 2000, at just two months old, we were told that Henry would need a bone marrow transplant to survive. We knew of others in our community that had survived this procedure, but otherwise our knowledge was limited. So, we began our research into the nuts and bolts of the transplant process. It is a process that is continuously changing and improving as the research evolves, thus we had to be proactive to stay informed.

The obvious place for Henry to have a bone marrow transplant would be at Duke Children’s Hospital, world renowned as experts in this field. You can imagine how lucky we felt to reside in close proximity to such a facility. When Henry was referred there, a pediatric hematologist/oncologist was assigned to his case. As new parents who were joyous with the birth of our first child and overwhelmed with his unfortunate diagnosis, we did not exercise our right to change physicians when our personalities clashed. The knowledge that Henry had no suitable donor combined with the conflict with his Duke physician only added to our constant worry.

With each visit, we learned to deal with his very conservative care of Henry and took comfort in knowing that his daily care was in the very loving and capable hands of the local Dr. Gehrz. We would also realize that the Duke hem/onc physician was generally in conflict with the recommendations of the transplant physicians at Duke. We would ask at each visit, why Henry had not been referred to the transplant physicians if that was in fact the ultimate cure for Kostmann’s. This physician would then proceed with what would become his famous long lecture about the pros and cons of transplant, when the Neupogen seemed to be working fine. He would explain the dangers of graft versus host disease, quote Henry’s excellent ability to avoid life-threatening infections, the absence of a perfect match and end with the statement, “transplant over my dead body”. We would leave these appointments in a state of confusion, and wonder if we as parents were correctly advocating for our child. We would constantly try to mentally balance the risks of continuing with the daily shots of Neupogen versus the risks of proceeding with a transplant without a match. The other elephant in the room, was the fact that the Kostmann’s could progress to a very dangerous form of leukemia, without warning.

I began to email his Duke physician about a month prior to Henry’s semiannual visits. I would request that he get a recent search of the marrow registry so that we would have that information to discuss during his upcoming visit. He never formally searched the registry; he felt that is wasn‘t necessary as Henry was doing so well. He would request a “preliminary search” from a friend who could obtain that information, as a formal search can cost more than $5,000. We were told and given printed reports of those searches with hundreds of 4 out of 6 matches, both from adult marrow and umbilical cord units. After long discussion, his recommendation would be to come back in 6 months. For years, we lived our lives in 6 month increments. We would go to the visit, ask difficult questions, receive the dreaded famous lecture, and leave anxious, scared and disgusted. About 10 days after each visit, I would receive an email that the bone marrow biopsy was free of leukemia and our joy with those results would replace those horrible feelings.

It was obvious to us that Duke was partial to using umbilical cord units for transplants rather than adult marrow, citing that there was a less chance of rejection with the immature and not yet established stem cells. Still, there was no perfect umbilical cord unit that perfectly matched Henry, and we were afraid to allow them to transplant him, with only a 5 out of 6 match. We were learning to appreciate the dangers of graft versus host disease, which can cause organ failure if not kept under control. The only sure way to prevent it is to have a perfect match. Poor Henry didn’t have one.

Time passed and as the Grand Plan unfolded, we were led to the University of Michigan where they were intensely involved in the very latest research in graft versus host disease and Kostmann’s syndrome. Meeting Dr. Levine was a pivotal moment in the whole process and we finally felt like what we were doing was in Henry’s best interest. Their latest research on Kostmann’s proved that Henry’s days without leukemia were numbered and we had to make a decision. Also, they had just been granted an FDA trial to use the drug Enbrel for the prevention of graft versus host disease after transplant. They were seeing excellent results and therefore, we felt comfortable with allowing Henry to have a transplant without a perfect match. They proceeded with the formal search of the National Marrow Donor bank. Those results produced five adult and one umbilical cord 5 of 6 matches. The transplant team deemed Russ the best potential donor for Henry and on further testing, he was actually a 9 out of 10 match.

What we now know is that the DNA tests to join the registry prior to the year 2000, included just 4 antigens because that was all that was known at the time. As research progressed, 6 antigens were discovered and it is our understanding that the National Marrow Donor Program received grants to go back and update each person in the registry with the data for 6 antigens. All new volunteers on the registry are added with the number of antigens that are currently known by researchers. When Henry’s formal search of the registry was established in November of 2006, the research had progressed and there were then 10 antigens that had been discovered to predict the effectiveness of a suitable bone marrow donor.

Russ has been in the registry for about 10 years, thus he was included in all of those preliminary results. We do believe that the Duke transplant team would have persuaded us to use an umbilical cord unit over an adult marrow donor, as that is their primary area of research. Duke and the University of Michigan use the same chemotherapy regimen prior to transplant, so Henry would have rejected the umbilical cord unit, just like he did the first marrow transplant in Michigan. Once that umbilical cord unit was used, we would have had nothing to go back to for the second transplant. What would have happened? We will never know.

What we know for sure is that Henry is now cured of Kostmann’s. Ultimately, God’s Grand Plan chose Russ as Henry’s donor, and he unselfishly donated life to Henry not once, but twice. Henry’s transplant would not happen until he was 7 years old and would occur at the University of Michigan, rather than at Duke. In March of 2000, I would have never believed anyone that would tell me that this would be the outcome. We stopped asking the “whys” long ago, instead we celebrate the triumph. We hope that you will do the same.

Angela

P.S. In the past 18 months, Henry’s Duke physician has not once called or emailed us to see how we were all doing. He was Henry’s physician for seven years, and our last visit with him in November of 2006 ended the same as all of the other visits did. We do not understand it, and we’ve stopped trying to figure it out. We feel absolutely certain that no matter the outcome, we made the very best decision to chose the wonderful transplant team at the University of Michigan.

Tuesday, May 20, 2008 8:06 PM CDT

Yesterday was another amazing day. Courtney Hurd and the Hendrick Marrow Program arranged for Henry’s donor, Russ Baxter, and his family to spend the day with us in Charlotte. We started the day telling Gran goodbye and then seeing Poppy and Mr. “Rambo” on their way. Next, Courtney arranged for us to go to the Hendrick Golf Tournament, where we met Jimmie Johnson, Jeff Gordon, Casey Mears, Dale Earnhardt, Jr., Kurt Busch, Darrell Waltrip, many of the Nascar announcers, and MOST IMPORTANTLY, Mr. and Mrs. Rick Hendrick. He is the man to whom we are most grateful, and is truly a “HERO FOR HENRY”! It was exciting to meet the superstars of Nascar, but meeting Mr. Hendrick and finally being able to thank him for sponsoring our marrow drives, and helping so many families with hope and financial assistance was really wonderful.

All of the drivers were so very gracious and let us take lots of pictures. They signed model cars and Dale, Jr. also signed a t-shirt for Henry. Henry really embarrassed Angela when he introduced her to Jimmie Johnson as, “This is my Mom. She really likes you.” Even Jimmie knew it wasn’t because of his driving skills! After the “meet and greet” we went outside to wave at all of the drivers and they headed for the greens. The boys cheered on the golfers, and some of the golfers cheered for the boys. When Darrell Waltrip drove by he yelled, “Boogity, Boogity, Boogity” to Henry.

After that, Russ and Connie invited the boys to come to their hotel to swim. Later, we went to a “Dave and Busters” to eat, bowl and play arcade games. Russ was certainly a “ringer” on the lanes, with a score higher than the Moore family scores combined. Connie came in second, so we need lessons and a rematch some day soon. After lots of hugs good-bye, we look forward to seeing them in two weeks at our party in Radford.

Russ was actually on the National Marrow Donor Program Registry for about 11 years before he was called for Henry. Now, for some amazing coincidences or Devine Intervention: Connie grew up in West VA and did her back-to-school shopping in Roanoke! They lived in Pensacola, FL (which in very near Mobile, AL) when Russ made his first donation to Henry. He actually donated the marrow in Birmingham, AL (which is where Angela’s Mom lives and where I went to law school). After the first transplant, but before the second one, Russ moved to Canton, MI - which is about 10 miles from Ann Arbor, MI - where Herny had both of his transplants! Can you believe it?

Russ is a chemical engineer and he and Connie are already part of our family. Their two daughters, Emily and Sara, are precious and the boys bonded to quickly with them. They didn’t have brothers and our boys didn’t have sisters. Now they both do, at least in spirit. It is amazing how similar our families seem to be--even in parenting skills. (don’t hold this against the Baxters!)

We cannot wait for everyone to meet them in Radford on May 31st. Please forward this to any of your friends who might be interested in meeting Henry’s donor and celebrating this Miracle.

If you missed yesterday's entry, click "read journal history" above this entry. Also, for Henry's video on You Tube, go to www.YouTube.com and search the video learn live hope event and it will pop up. See the links section below for photos from the event where Henry met Russ, his donor, and also when he met the Hendrick NASCAR drivers.

We are home and resting from a very exciting weekend...

The Moore Gang

Sunday, May 18, 2008 11:53 PM CDT

The BIG DAY finally came! We just returned to our hotel from an AMAZING night at the Hendrick Marrow Program dinner and fund -raiser. The night was very elegant, and Courtney Hurd did an stellar job putting the event together. She is a true hero for the Hendrick Marrow Program, and a wonderfully smart, generous, beautiful and caring soul. While we had cocktails in the Nascar Museum and a wonderful dinner, Courtney arranged for the boys and Ashton Downs to “go wild” in the racing store and pick out whatever they wanted “for free”! We FINALLY met the man who saved Henry’s life. His name is Russ Baxter and he is a terrific man. His wife, Connie, and their two daughters, Sarah and Emily were just as wonderful. After a very emotional talk by me and watching a movie about his life, Henry asked for his donor to come forward. We all cried and hugged and then Russ spoke about his experience.

We were joined tonight by Angela’s dad, “Poppy”, his friend, “Mr. Rambo”, Angela’s mom, “Gran”, Henry’s pediatrician, Dr. and Mrs. Gehrz, (who diagnosed him when he was a baby), and Dr. and Mrs. John Levine, (who headed up Henry’s transplant team in Michigan). Also there were good friends, Paula and Ashton Downs, Mike and Mary Johnston, Regina and Greg Hutchins, Keith and Kari Fender, Steve Lovelace and Lisa Hartsell. Yes, we were feeling the love tonight.

The entire night was overwhelming, and a culmination of eight years of prayers and hope. I dreamed so many times that Henry found a match and was cured, only to awake and realize that I was just dreaming. Tonight, I had to keep reminding myself that this was real. Henry really is cured, and we really met his angel on earth. We spent a couple of hours visiting with the Baxter family, and then will spend most of tomorrow getting to know each other. Speaking of tomorrow, we get to go to the Hendrick Marrow Golf Classic and meet the Hendrick drivers (Jeff Gordon, Jimmie Johnson, Casey Mears and Dale Earnhardt, Jr.).

It is almost 1:00 am, and I am so tired. I just want you to know that your prayers paid off. Russ, the donor, and his entire family will be in Radford on May 31st to celebrate and honor all of you who helped get us through this ordeal. We love you all. Thanks for BELIEVING! We have the movie about Henry and lots of pictures from tonight. Follow the directions below to see more about tonight! Please pass Henry’s website on to your friends. Thanks. Patrick

Please go to www.youtube.com and search learn live hope event or type http://www.youtube.com/watch?v=_1u-qXUPG3w into your browser box to view the video that we showed the donor tonight. Angela and Kevin Lillard worked hard and I think you will enjoy it. Also, more than 100 photos from tonight were loaded on the flickr site, just click on the link below.

Thursday, May 15, 2008 9:50 AM CDT

Just wanted to update on our trip to Ann Arbor. We ran into Dr. Yannick (also known as Dr. Funny) on our way into the room. He actually walked right past us, not realizing it was Henry! He commented on Henry’s wonderful appearance and joked around, as usual. I quickly snapped this photo and thought you would like it. You may remember, he was the one who admitted Henry for his transplant. I reminisced the day of Henry’s hospital admission and the facts of the transplant process that we candidly discussed. I remember Dr. Yannick drawing a graph of the phases of the transplant, listing the issues in each phase and telling me that it was the “graft versus host” that he most worried about with Henry. I must have been taking deep breaths and looking kind of scared because he then looked at me and said, “this is real tough stuff Angela, and once you start the process, you cannot turn back.” Oh the terror and responsibility that I felt at that moment. My shoulders are tense, just typing about that time in my life.

Well, one year later and Henry is doing great. He does have chronic graft versus host disease. It is mainly of the skin-his lips, cheeks, hands, and in his mouth. The best way that it was described to me was that it is like embers burning after a fire. Something may come along and ignite them and that is when Henry will experience these flare-ups on the skin and then eventually, the embers will die out and the graft versus host will be gone! As long as it is present, Henry will remain on the anti-rejection medication. This drug suppresses his immune system and therefore he will be at a higher risk of getting infections for a longer period of time. He will continue to take an antibiotic and an antifungal medication to help him during this time. This won't prevent him from repeating his immunizations next week.

Tuesday, he had an eye exam which showed a good tear film over his eyes, but they did prescribe Restasis drops which have shown to prevent graft versus host disease of the eyes. Tear production is affected if you have GVHD of the eyes. He has to follow up with the eye doctor next visit.

He had an echocardiogram, but I didn’t get the results of that. I figure that no news is good news. The pulmonary function test was improved from the last visit. The lungs are not back to their original capacity, but they are definitely moving in that direction.

On to the blood counts!

White Blood Cell Count 5.4 (normal is 4.5-13.5)
Hemoglobin 12.5 (normal is 12.5-16.0)
Platelets 135,000 (normal is 150,000 to 450,000)
Absolute Neutrophil Count 2900 (normal is 1800 to 10,100)

They all look great. He barely squeaked into the normal range on hemoglobin and now the platelets are acting naughty! One day, they will all be in normal range and we won't know how to act.

Henry lost a pound and grew an inch. His blood pressure was normal. He doesn’t return for his next visit until August!

Thanks to all of you for your offers to help with the Transplant Celebration. We are expecting between 500 and 600 friends and family. It is going to be so much fun!

As promised, even if it is midnight on Sunday, I will post photos and an update after we meet “the donor known as Russ”.

Angela

Monday, May 12, 2008 7:37 AM CDT

We have a busy week! Today, Henry and I are off to University of Michigan for his annual check up. Tomorrow, he will have a re-check of his lungs, heart, and eyes which is routine for bone marrow transplant patients. We, of course, will see Dr. Levine and hope that Henry is again able to try to wean from some of his medications. We will drive back to Radford on Wednesday.

Friday, May 16, 2008 is the one year anniversary of his second transplant. In contemplating the transplant, the year after it seemed like it would be more restrictive than it has been. Henry has just blossomed and it really has been a great year of healing for all of us. Sunday, May 18, 2008, we will be able to meet the man saved Henry. How exciting!

Of course, I will post photos of Henry meeting his donor. I may not be able to update again until after we meet him on Sunday night. As you can imagine, our minds will constantly be thinking of what we will say and how we will act when we see him (the donor). I am sure that no script would ever be able to be followed during that emotional moment. I can't wait to share it with all of you.

First Communion photos are now on the Flickr site.

Angela

Sunday, May 4, 2008 9:19 PM CDT

Henry’s first communion was so emotional for us. Each of the children had things to do during Mass today and Henry had the perfect job-a greeter. He called everyone that he knew by name and shook their hand like a real gentleman. It just made their day. He also served as usher and collected the offering and really enjoyed that as well. He remembered to genuflect and he made the sign of the cross, looking like he’s done it since birth! Patrick and I sat on the edge of our seats the whole time, hoping that he wouldn’t grimace when he drank the wine/holy water. He didn’t and made us proud. He looked great and everyone told him that! Father Patrick had offered Henry his First Holy Communion while he was in Michigan last May. This was the day or two after his second transplant. Henry refused it and said that he would “wait and do it with Blake at church next year.” He BELIEVED then that he was going to be fine. Knowing this made today all the more special.
The Transplant Celebration is going to be so much fun. Everyone is invited to Bissett Park on May 31st from 11am to 2pm for hot dogs and family games. The donor and his family will be there as will some of our friends from Michigan (7Mott). We have music and games and we hope to see all of you there. Don’t forget your lawn chair and camera.
The American Red Cross will have the bus there for whole blood collection. If you know that you will be donating, we need you to call them to sign up ahead of time so we can get at least 30 people signed up. Last minute walk-ins are fine, too. 540-639-2140
The Hendrick Marrow Program is sponsoring a FREE marrow drive at the Transplant celebration-thank you Courtney Hurd! If anyone wants to join the registry on the 31st, there are no needles involved. The latest test requires only a cheek swab.
Some of you have asked how you can help with the Transplant Celebration. Here are some things that we need. Please call me at 540-731-4849 or email at armpkm@aol.com if you are able to help out.

We will need volunteers for :

• set-up committee (needs to arrive at 10am-fill balloons, cover tables with butcher paper, help organize food as it arrives)
• clean up committee (needs to arrive at 1:45pm)
• hot dog grillers (1000 am to noon)
• servers for food (noon to 1:30 in 30 minute increments)
• servers for cotton candy machine (arrive at 11am)
• servers for drinks (11am to 2pm-30 minute increments)
• brownies-need 40 to 50
• 8 pans of baked beans-throw away containers only
• large bag of Plain Chips-need 10 to 15
• charcoal -need 50 pounds

The meeting with the donor is quickly approaching. It is like we are waiting on Christmas morning. I can’t think of words to explain how we already feel about this man. The meeting will surely be like meeting a new member of our family.

I hope that you enjoy the photos from today!

Angela

Sunday, April 27, 2008 10:09 PM CDT

Henry continues to do well. He finished the season of soccer and ended the week with very good grades. While it has taken him time, he seems to have been able to get back in the groove in both sports and academics. The boys count down each day until their swingset arrives. They have saved Christmas and birthday money for a few years to purchase this set. I know that it means so much more to them to know that they each saved money toward the purchase.

Angela and I continue to count down the days to meet "Russ," Henry's donor. It is nice to finally know his name (at least his first name). I feel like an expectant faher waiting for the birth of a new child...wondering what he will look like, where he lives, and every thing else about him and his family. We wonder how we will possilby thank him for saving Henry's life.

We are working hard planning the party at Bisset Park on Saturday, May 31st from 11:00 am until 2:00 pm. The Donor and his family will be here, as well as many of our friends and family from far away. EVERYONE is invited. We plan to serve lunch, drinks, cotton candy, have a DJ, blow up rides for the kids, and a visit from Miss Virginia, who is currently 3rd runner-up to Miss America. We expect (and hope for) a very large crowd. If any of you want to help in anyway, please let us know. Keep Believing. =Patrick

Friday, April 11, 2008 6:24 AM CDT

Henry took a break from soccer this week, but is feeling so much better. All three boys are feeling better and we are looking forward to the nice weather that is predicted today. Thank you all for checking in on us and for your prayers.

It is so nice to be at home together this Spring, Angela

Wednesday, April 9, 2008 6:18 AM CDT

Everyone here continues to feel better. They are all going back to school today. It is picture day for all three boys and they picked their outfits out last night!

Henry has received $205 more dollars for the Walk for Wishes. This brings the GRAND TOTAL to $530. This is so exciting to Henry. He has been working on his thank you notes since he has been out of school this week.

We are blessed that his flu shot and your many prayers helped to protect him from the effects of this viurs.

Believing, Angela

Monday, April 7, 2008 8:06 PM CDT

For those checking....Henry is feeling better today. He did not have an elevated temperature all day so we didn't have to use Tylenol. He had a great visit with Dr. Gehrz who thought he was doing GREAT to have tested positive for the flu. On another note, Samuel is feeling yucky. Let's hope that it is not the flu!

Angela

P. S. If this doesn't make sense, click on "Read Journal History" to read the entry from yesterday.

Sunday, April 6, 2008 7:30 PM CDT

1 year post bone marrow transplant-the first transplant

Today, one year ago, Henry's deficient marrow was replaced with marrow from a wonderful man. We marked the one year anniversary with a trip to the emergency room. Henry woke this morning with a temperature of 101.3F. Of course, we went into panic mode. I had to gather my thoughts before I knew exactly who to call first. We were referred to the ER because a fever means an infection (viral or bacterial) and that means lots of tests to figure out the source. He tested positive for Influenza B and is now on Tamiflu. This is the second case of Influenza in our home this year, even with the flu shot!
Henry is wanting to rest, especially when his temperature is elevated. Any virus can suppress his immune system and can be very dangerous, but he is expected to do just fine. His blood counts today were just perfect, with exception of low platelets. No need to worry as this is classic for a viral infection. We will follow up with Dr. Gehrz (our local pedatrician)tomorrow.

All five members of the Moore family walked in the Walk for Wishes on Saturday. Henry walked the entire 2 miles up hill. We were so amazed by his stamina and after finding out that he had Influenza, we are stunned that he was able to do it. We had a great time. I added photos from the walk on the Flickr website.

I will keep you posted on his progress. Believing that he will be better in a few days, Angela

Friday, April 4, 2008 7:11 PM CDT

Wow! I just read through the journal history from April 4th through 6th, 2007. (you should do the same) I remember thinking of the donor almost as frequently as I did of Henry. I couldn’t have a thought about one of them without thinking of the other one. To this day, my thoughts bounce between the two of them. His marrow inside Henry’s bones-it is amazing how that works. That week before the first transplant, I remember selfishly praying that the donor wouldn’t get into a car wreck, that he wouldn’t change his mind about donating, and then the last prayer was for his donation process to be as pain free as possible. (Henry just said he never would have changed his mind and don’t write that in my journal) I know, they shouldn’t have been in that order, but I am being totally honest with you all. I remember watching Henry’s color change from pale to almost translucent. His hair was still growing despite the exposure to the high doses of chemotherapy. At that point, he wasn’t vomiting as much as I had prepared myself for, but he did have a strange odor. (from the chemotherapy) We had to get up to the potty many times and this was no small feat. His need to potty always seemed to occur just as I fell to sleep. One time while I was helping with the IV pole, I must have sighed (a little too loud). He looked at me and said, “Have you ever had to be in the hospital with an IV?” I said, “Yes, when I delivered all three babies.” Then he said, “Well if I was helping you to the potty and you were in the hospital, I wouldn’t act like you are.” That should have been a clue as to the major change in persona that would follow. Just felt the need for reflection and thought I would share the thoughts with you.

Henry has collected $325 for the Walk for Wishes tomorrow. Samuel and Harper will be going to the walk with us. Ms. Wendy loaned us her double jog stroller and we will be sure to take our ponchos. We have been asked to speak at the event and Patrick quickly volunteered me to do it. Yikes!

I took the home page photo today. Henry and Maggie Jarvis have read the morning announcements at McHarg this week. Henry bought (with Kid Cash from school) the ability to read the morning announcements at school. According to Samuel, Henry did a great job. Especially on April Fool's Day when he wore glasses/nose/mustache and delivered the announcements as Groucho Marx.
The past days have been filled with much anxiety. Henry’s skin GVH (graft versus host disease) flared up and required him to go back on steroids and the anti-rejection medication to be increased. With the medications and creams, his skin is back to its normal color, just a little dry.

Thank you for continuing to check the website~ Angela

Wednesday, March 26, 2008 8:59 PM CDT

Our Easter holiday was fun. We are so grateful that this Easter was much different than last year, in the hospital. Alabama was not as warm as expected, but the boys did have a day or two in their shorts! We enjoyed seeing family that we had not seen in over a year and rejoiced with them in Henry’s health. I will post 4 photos here on the website, but for MANY more, please go to our family photos on the Flickr website. (just click on the link below)

Patrick, Henry, and I will participate in the first annual Walk for Wishes on April 5, 2008. This is a walk from Roanoke Memorial Hospital up to the Mill Mountain Star. Funds raised will grant at least six wishes in our area for children who have a life-threatening condition. We are excited about helping with this fundraiser, but to be honest, we are wondering how all three of us will do walking that long walk-up hill! We will do it and remember the fun that we had on Henry’s Make A Wish trip and will think of all of our friends who have benefited from this wonderful organization. I know that some of you have already donated and we really appreciate that. For the walk, Henry will accept any donation, coins to checks (Written to Make A Wish Foundation of Central and Western Virginia) here at our address…

Henry Moore
403 Harvey Street
Radford, VA 24141

I will update you on his fundraising and will post photos of the walk after the event.

*****THERE WILL BE A BLOOD DRIVE ON MAY 31ST DURING HENRY'S TRANSPLANT CELEBRATION. THE EVENT WILL BE FROM 11AM TO 2PM. WE NEED 30 FOLKS TO SIGN UP TO GET THE BUS THERE FOR THE DONATIONS. PLEASE EMAIL PAULA DOWNS AT arcradf@swva.net OR CALL THE RED CROSS OFFICE AT 540-639-2140 TO SIGN UP. THANKS!

Believe~ Angela

Tuesday, March 18, 2008 10:22 PM CDT

Henry's Donor Days began today and will continue on Thursday and Friday of this week. The donation center welcomed us with banners, balloons, snacks, and deli sandwiches for lunch. The staff at the donation center was especially kind and we appreciate their efforts to make all of us comfortable.

Henry made a poster last night that all of the donors could sign. He also wrote personal notes to each donor. As he wrote out each note, his curiousity grew. He finally said that he wasn't going to school today and that he was going to come to watch everyone donate. We struck a deal that he would visit the center during the time that his Dad donated and that seemed to be a great compromise. He really enjoyed his time there today and felt special when he saw the banners and balloons.

Thanks to all of the donors who took time out of today to donate in honor of Henry. These donations will likely benefit someone in the New River Valley in the next few days. I remember watching Henry's platelets infuse and vowing to become a donor. It wasn't until Margaret at the donation center suggested it, that we decided to have Henry's Donor Days. It gives you a great feeling when you donate and I recommend that you try it, no matter where you live.

Please call or email me if you are interested in donating later in the week. 540-731-4849 or armpkm@aol.com

I have added photos here on the webpage and also on the Flickr site-just click the link below in the "links" section.

We are off to Alabama later this week. Have a great Easter Holiday. Last year on Good Friday, Henry had his first bone marrow transplant. What a difference a year makes!

Still Believing~Angela

Wednesday, March 12, 2008 9:29 PM CDT

Day 300 after the second transplant

(Day 341 after the first transplant)

We made it home around 9:30 last night. We saw lots of snow in Ohio, but the roads were perfectly clear. It was 17 degrees in Ann Arbor yesterday morning! We saw Dr. Levine and Deb, our favorite nurse practitioner. They were both impressed with Henry. He is showing some mild changes with the Graft versus Host Disease-the main difference was in the mouth. I had never thought to look in there for GVHD! I just know that his skin is incredibly dry and that I deal with whining almost nightly when I rub him with the cream after his bath. Even with that, they decided to decease his Tacrolimus- the oral anti-rejection medication. In two weeks, Henry will have a blood test here locally to make sure that there are no changes in the liver. With the decreased dose of medication, liver readings would increase if the GVHD was going to flare up. I also will be watching his skin closely. The Tacrolimus was decreased and the magnesium was decreased to a one time daily dosage. The anti-fungal medication was changed from a twice daily liquid medication, to a once daily capsule. This means that Henry is down to one pill in the mornings, the Penicillin and the rest of the medications are at night. This will definitely make things easier on our very hectic mornings.
On to the blood counts… This is the longest gap in Henry’s entire life without a needle stick for a blood count. This was a very long two months for me. We have lived the last 8 years with our freedom being dependent on the most recent neutrophil count. I have had reign in my “control tendencies” and allow Henry to live like an 8 year old, meanwhile, the flu and other viruses were lurking everywhere. I guess I will feel the same way when I begin to allow him to drive independently and those crazy drivers are lurking, too. (This is how I justified my craziness.)

WBC 4.7 normal is 4.5 to 13.5
Platelets 156,000 normal is 150,000 to 450,000
Absolute Neutrophil Count 2500 normal is 1800 to 10,100

THEY ARE ALL IN THE NORMAL RANGE!!!!! This is just amazing and wonderful and so exciting to us. His hemoglobin was just a tad low, but I am not going to post it, because I want to be able to look at the journal and see all of the numbers in the normal range. The donors marrow is happy….Life is Good!

Henry has a return appointment on May 13th. This will be just before Day 365 after the first transplant. He will of course see Dr. Levine and have his heart and lungs tested, but no bone marrow biopsy is needed. He hasn’t had one of those in almost a year either. Wow, I just realized that. In the past, he had one every 6 months and that is how we lived our life-in 6 month increments. In May, he w ill begin to receive the routine immunizations that are no longer effective after the chemotherapy and radiation. (That is every one that he received since birth.) I dread this and have some reservations about it. I won’t go into detail, but I can assure you that my Google search engine is very busy with helping me to research this subject.

I looked back at my journal entry from today, just a year ago. In some ways, I feel like it was forever ago. It also seems like yesterday. I was so scared. I remember not wanting to sign the consent forms. I would blame myself if there was a negative outcome. Many thoughts were passing through my mind….will Harper have trouble bonding with me after being gone for so long? ( a little), will Sam be negatively affected by the absence of his best friend and his Mom? (no), will my husband lose it while I’m gone? (no), will my house be kept up while I’m gone?(yes-thank you Miss Karen) and the most overwhelming one was would he make it? I wanted a definite answer. I just wanted someone to tell me that he would make it and life would be like it is right now. But, no one would guarantee that. So, that is where Faith enters this whole story. And yes, that was the foundation of my ability to make it through last year without totally losing it. That and the wonderful love and support from all of you….

Don’t forget Donor Days next week. It is Spring Break which means some of you will be out of town. If you aren’t, please consider donating blood or platelets in honor of Henry. Having this drive to replenish the blood products that Henry needed during his transplant, is part of the healing process for us. We appreciate all of you who have and will sign up to donate.

One other piece of news…Dr. Levine and his wife, Peggy, will attend the event in May when Henry meets his donor. Dr. Gehrz and his wife, Elaine, will hopefully attend as well. We are counting down the days until we meet this wonderful man. Thank you all for your offers to help with the Transplant Celebration on the 31st.

Angela

Sunday, March 9, 2008 10:22 PM CDT

This has been a very busy week. Henry's Make a Wish trip was both exciting and exhausting. Angela, Henry and Sam are packing tonight and getting ready to head to Ann Arbor tomorrow morning. Henry has an appointment at the University of Michigan Tuesday morning. Hopefully, this will be an uneventful check up. Harper and I will stay behind at home. I feel guilty that Angela has such a long drive by herself but I really need to stay here to work.

There is an exciting tribute to Mr. Rick Hendrick in April. We are fortunate to be invited to help show our appreciation to a man who has given so much to the quest to add new potential marrow donors to the National Registry.

We are counting down the days until May 18th, when we will meet the man who saved Henry's life. I picture him in my mind, and I see a large man with a mustache. The bag of marrow collected for Henry's first transplant was so huge, I just think it must have come from a big man. I think Angela pictures him as something else.

We are really hoping that he and his family will return to Radford for a GIGANTIC PARTY AT THE PARK on May 31st. We want this party to be a celebration of a LIFE each of you helped save. I'm looking for cotton candy machines, helium balloons, kiddie rides, great "carnival food" magic shows, singers,dancers, baand and anything else that would make it a PARTY! This party is for ALL of you who did anything for us; sent a card, said a prayer, or even thought a happy thought or just BELIEVED that Henry would get better. If someone out there is willing to sponsor a game, cotton candy machine, Coke truck, etc.,they are certainly williing to adverstise at the party. We want this event to be TOTALLY FREE for everyone who comes!

No matter how lonely it sometime seems, and the forever unanswered questions of why he lived and not some of the oters, may never be answered....Still hard to remember to be thankful, and not sad.

Please keep Angela, Henry and Samuel to be safe on thier trip. Belive that this check-up will be fine.-Patrick

Saturday, March 1, 2008 0:02 AM CST

The trip to Disneyland was great! It is located about 40 miles from our hotel and the drive was about 50 minutes. There was one little snarl in the traffic, which provided a great opportunity for us to review the directions. The weather was cool and overcast, perfect for our day. The resort is much different than the Florida’s Walt Disney World. We were amazed when we were directed to our parking spot-in a garage! We road the tram to the park entrance, and we were surprised to see the entrance to Disney’s California Adventure, Downtown Disney, and Disneyland within steps of each other. The next big difference was the size of Cinderella’s Castle. It is a miniature, compared to the one in Florida (I posted a photo of it on the Flickr site). This time of year was predicted to be low season, but the park became quite crowded by noon. We didn’t get the feeling of it being the “Happiest Place on Earth” as we did in Florida. It seemed like most visitors were California residents because we didn’t see any kids squealing like it was the first time they had seen this place. I guess I am used to seeing families with Mom (who has planned every detail of the vacation down to every minute) leading her family with her tour plan in hand. We just didn’t see that here. Everyone seemed so relaxed, including us! We entered the park at 10am and left at 9pm. The boys were so tired, and never complained about the walking until after they had selected their souvenirs. This was about 15 minutes before we walked out of the gates, so it was tolerated. All three had a great time and you can see that in the photos that I posted.

The boys quickly fell asleep so we ventured to Rodeo Drive, Beverly Hills, and Santa Monica Boulevard. It was so neat to see it all and to actually drive around those areas. We arrived back at the hotel before midnight and crashed. The time change is really getting to the adults.

Today is the big day. We are scheduled to leave our hotel at 11am and travel to the Staples Center for the LA Lakers game. We will have time to visit the souvenir shop and then be ushered to our seats. We have no idea where they will be located, but we hope to get a close up view of Jack Nicholson (or any of the other stars that happen to attend). Henry will be able meet Kobe there at the Staples Center after the game is finished He is allowed to have 5 things signed by Kobe, but no #24 or #8 jerseys. We will get him to sign Henry’s Make A Wish T-shirt (which had to be laundered in the sink yesterday) and hopefully frame that with his game ticket and program. Henry is supposed to write down any questions that he has for Kobe and we are allowed to take still photos-no video. I can’t wait to hear the questions…

Having a fun time in LA,

The Moore Gang

Saturday, March 1, 2008 0:02 AM CST

We didn’t get to bed until close to midnight last night, so it was difficult to figure out what was happening just 3 hours later when Harper woke me up crying. I realized that he wasn’t going to stop, so I went in his room to check things out. What, he picked tonight to wet the bed? Especially since I had only changed his sheets just 9 hours prior. He quickly fell back to sleep and so did I. The alarm woke me at 4:15 am- no hitting the snooze today. I bolted out of bed, showered, dressed and packed the “last minute list”. Everyone was dressed by 5:15am and the limo arrived on time at 5:30am.
The limo ride was added to the wish just this past Friday. Angelette (his Make a Wish planner) called me on Friday to review the itinerary and surprised us with the limo. Really? For us? The boys squealed when I told them. Turns out, it was white, not a “big long black car” like had been discussed at the dinner table each night this week.
They were so sweet in the car this morning. As we passed McHarg Elementary, Henry said, “Good-Bye McHarg.” “Good Bye Ms. Woods (his teacher).” “Good Bye Girlfriend.” Samuel told Henry that he didn’t have a girlfriend, but that a girl in his class had asked him to be her boyfriend and he said no. Henry said, “If she asks you and you like the hot feeling, you’ve got to say yes.” Patrick and I cut our wide eyes to each other-without making a comment. He then added, “My girlfriend and me (sic) were both in love the first time we saw each other and she is hot.” Patrick and I have no idea where these thoughts have originated. Could it be genetics (from his father, of course)? Could he have learned it from other kids at school? Or could it be the DNA of the donorJ? Oh, if this is how it is now, what do we have in store for us later?
The boys were just perfect in the limo, however, that ended at the US Airways ticket counter in Roanoke. Regardless, we were able to check-in and made our way through security with only one glitch…they didn’t like the location of my hand gel. They wanted it in a zip lock bag, rather than in the nifty rubber holder that secures it to my carry-on. Now how in the world am I going to get to the hand gel with it all the way in the bottom of my carry-on, zipped up in a bag? If I was going to use it as a weapon, believe me, it would have been wasted during the sibling bantering at the check-in counter. Did I just type that?
Somehow, I managed to upload the morning photos and post a short journal entry, prior to boarding. I felt that the boys should do fine on the flights. I packed them plenty of snacks, word searches, coloring books and sketch books, national geographic for kids, Highlights for Harper and freshly synced iPods. That became “old news” way too early in the trip. Maybe it was the Sandman in Harper’s eyes, maybe hunger, I am not sure. Right at the time we were to land in Charlotte, he decided that he was going to stand in the aisle-and scream and cry. I started to wonder if had made a mistake by allowing him to come on the trip. The second flight was so much better. Harper sat in his seat thanks to bribery with peanut M & M’s (not me, his Daddy) . Henry and Samuel sat across and diagonal from us and acted like well mannered young men. That relieved my anxiety about Harper’s very poor behavior on the earlier flight.
Los Angeles is beautiful and fun. The temp was in the 70’s today and very sunny. It was chilly tonight, but just perfect weather after leaving a very frigid Virginia.
Our greeter at LAX was a special lady named Sarah. She volunteers each week for several wonderful organizations. She was Miss Muscle Beach, sixty years ago. She had an LA Lakers car window flag that she used to lead us through the dense LA traffic, right to our hotel. It is a Doubletree Suites in Santa Monica, right near the pier. It could not be more suitable for our family and the location is primo! After a quick nap after check-in, we ventured to the pier, touched the Pacific Coast, and watched the boys play some games at the Amusement Park. I have no idea how we will ever get all of these stuffed animals back to Virginia.
Make A Wish offered us tickets to Universal Studios for tomorrow. We researched the California location and found that it doesn’t have the Dr. Seuss area, like the one in Florida. Most of the rides are geared toward teens, and maybe two are appropriate for toddlers. So, after much planning, thought, and divine intervention, we have decided to go to Disneyland tomorrow. I found a website called Ride Max that allows you to pick the rides you want and tell it what time you will arrive and leave. It does the itinerary planning for you-something that I desperately need right now. The boys are so excited about seeing Mickey tomorrow-“the California one, not the Florida one.”
Since tomorrow will be busy, I may not get to update the journal. I will at least try to load photos of our day.
Today, I did add photos of his first transplant. Not that you needed it, but I thought is would remind all of us, just how this trip was earned!
Sincerely,
Angela

Remember to use the Flickr website to view the photos from our trip...

http://www.flickr.com/photos/henrymoore/

Friday, February 29, 2008 6:30 AM CST

So far, so good! The limo trip was a hit. We are in the airport and our flight is on time. We will arrive in LA @ 12:18 their time.

I will update later. Go to http://www.flickr.com/photos/henrymoore/

for photos from this morning.

Angela

Wednesday, February 27, 2008 7:39 PM CST

Today Henry received a "BAKE A WISH" cake from the Make a Wish foundation. It arrived with a note wishing Henry a great time on his Make a Wish trip. We have always thought that the Make a Wish Foundation was a great organization, but you have no idea how much care and work they have provided to make Henry's special wish come true. It is getting more difficult for Henry to contain his excitement, and I hope he can control himself at school tomorrow. He is almost as excited by the limo ride as the trip itself! Seeing the LA Lakers play the Mavricks and meeting Kobe Bryant will be so exciting for him. I hope he doesn't tell Kobe that he like Michael Jordan better!

Thank you to everyone who has signed up to donate blood or blood products on "Henry's Donor Days". There are still several opportunities to sign up to donate. We realize this is a holiday weekend, but we appreciate everyone who has made the commitment to give "the gift of life". We didn't realize how much blood, platelets and other cells that transplant patients require. Although Henry is well on the way to complete recovery, we will not forget the kids and adults who face this mighty fight. We will keep sponsoring marrow drives and blood product drives for as long as we are able. We cannot thank you enough for helping us make these drives successful.

We will take the laptop with us and try to update from Los Angeles. Thanks for all your support and keep believing this miracle has happened.-Patrick

Wednesday, February 20, 2008 9:14 PM CST

Day 279 after the second transplant (just 86 days from the 1 year mark)

It’s been a while since the last update! Hopefully, the entries will become less frequent and we will slowly wean ourselves from this website.

The transplant party is going to be Saturday, May 31, 2008, at Bissett Park in Radford. We were unable to schedule Memorial Day weekend which may keep some of you from traveling to see us. We hope that it doesn’t, but we completely understand if you can’t make it. This celebration was recommended by many of you, so we hope to see you there. It will be a fun time, and the planning has already begun. I wanted to post the date, so that you could mark your calendars. I will post more details as I plan them.

Henry is doing great. He escaped the flu virus last week, even though it was in our own household. Samuel tested positive for it on Monday and the entire family quickly started Tamiflu. I hope that is the last we see of that! We all took the flu vaccine back in November, but poor Samuel still picked it up somewhere. I have Henry covering his hand with the end of his jacket sleeve as he opens every door. That was the only way I could imagine him going to school and opening doors that 500 other kids were opening each day. He is a little rebellious when it comes to handwashing, hand gel, sani-wipes, and the like. I guess I can’t much blame him after 7 years of it.

He does have a cold, but nothing different than what most kids have right now. His lungs seem to really like the Advair inhaler that he takes twice a day. His cough is no longer present. He is completely off of steroids and his antirejection medication (Tacrolimus) was changed to half of the dose he was taking. He still takes penicillin and magnesium twice daily. His skin GVHD is manageable with topical creams. He has very dry skin on his face. It feels like sandpaper and is on both cheeks, under his chin, and on his nose. Every few days, his right cheek turns red, but it resolves when I use a different cream for that. His weight is still 48 pounds. I am trying to beef him up by sending two snacks with him each day. He tells me that he is eating all of his lunch at school and he is eating great here at home. Oh yes, that is another step toward a normal life….he can eat cafeteria food now and he loves it! We have noticed a big difference in his scholastic abilities just this last week. He is making progress and has really enjoyed his recent studies on Famous Americans. We are so proud of him. He is enjoying his guitar lessons and will hopefully be able to play a tune for the crowd at the transplant celebration. Slowly, life is getting back to normal and we are
enjoying it.

We leave next Friday for the Make A Wish trip. We are very excited to visit Los Angeles, but are nervous about the 4 hour plane trip from Charlotte to LAX. I can just see the other passengers on the plane when they see us board with 3 boys in tow, especially a 3 year old. When he (Harper) flew to Detroit with Patrick last April, he was happy to wipe the entire plane with a sani-wipe. I guess we will start with that first. I will try to update and post photos while we are there. We are so thankful to Make A Wish for the trip. Henry definitely earned it with all of the pain, upset tummy problems, and the 71 day hospital stay during the transplants.

Finally, I am asking each of you to consider donating whole blood (takes 15 to 20 minutes), double red blood cells (takes 35 to 45 minutes), or platelets (takes 50 to 90 minutes) during the week of March 18th. We have arranged times (from 7:30am to 4pm) at the Blacksburg Red Cross donation center for March 18th, 20th, and 21st. I was there two weeks ago to donate platelets and it is a wonderful place. They have a video collection with recent releases, cable TV, and a comfortable recliner with a heated blanket to cover you. The staff is especially kind and competent. These special times are called Henry’s Donor Days. I have more information about the criteria for donation for all three methods and will be happy to answer any questions. Please send me an e-mail to armpkm@aol.com to request a time and I will sign you up and send you the information that you will need.
If you do not live in this area, I encourage you to join our efforts in your local area. Call your local American Red Cross donation center and sign up to donate during the week of March 18th. March is American Red Cross month and we wanted to give back to the organization that supplied his necessary blood products during his transplant. (We have a lot to replenish!!)

I hope to hear from you soon,

Angela

Thursday, January 31, 2008 6:41 AM CST

We received a wonderful gift yesterday! Actually, two gifts! Henry's donor sent a letter to Henry and one to us. It has been eight months since his transplant and we had not heard from him. We wondered if we would ever meet him, as some donors prefer to remain anonymous. Wow! What a man he must be. Although the letter is carefully crafted to keep his identity and home state secret, he is clearly a man of deep religous faith and very much a family man. We already knew he was 49, but we now know that he is married with two daughters, ages 12 and 14. One daughter likes to read and write, while the other is learning to snowboard. (maybe a clue that they live in the mid-west or "up north"!) He told Henry he wants them to play basketball. Most importantly, he told Henry and us that he wants to meet us!

We will get that opportunity on May 18th at the Hendrick Marrow Program dinner and auction (which is a fund of the National Marrow Donor Program). Their goal is to raise One Million Dollars this year, and this dinner and auction is their major event of the year. Henry's donor will be a guest there, and neither Henry nor his donor know they will meet each other at this event. We cannot wait. I am certain there will be lots of tears.

The Hendrick Marrow Program does sell tickets to this event. However, this cost is very expensive. Tickets are $650 per person, or sponsored tables of eight are $5000. While this seems expensive, it promises to be a very elegant and exciting night. We also are mindful that the Hendrick Marrow Program has helped sponsor each of our local marrow drives, and we estimate that they have paid for about $100,000.00 of "free" tests in the New River Valley. With this being said, if you would like to go (and we would love for you to be there with us), please call or email Angela and she will help secure your tickets.

Again, we appreciate your prayers and good thoughts. Henry is doing fantastic! Believe it will continue. -Patrick

Sunday, January 20, 2008 9:26 PM CST

Day 249 after the second transplant

I am apologizing in advance for this long update!

We had a safe trip to Michigan last week on Monday, Tuesday and Wednesday. We had some snow when we woke on Tuesday morning, but nothing that interfered with our visit. First stop was the pulmonary function test in the Motts Children’s Hospital. This requires Henry to sit in a vertical chamber and breathe through a tube with verbal cues from the respiratory therapist. This test measures the volume of air going in and coming out of the lungs and how powerful he is able to breathe. His results were 20-30 percent lower than they were last year, before the transplant. They are unchanged from his last test in December and about 10 percent better than the results in October during his lung infection.
Next we hiked back over to the Cancer Center for his appointment with Dr. Levine. Here is what we know: Henry weighs 50 pounds and is 48 ½ inches tall. His growth (or lack of growth I should say) has been a concern for me and Patrick. We really noticed it during basketball season, as most of his friends have now outgrown him. We could see his frustration as their height advantage allowed them to block most of his shots. In true Henry fashion, he just worked harder and became a little more aggressive to eventually score some points this season. Dr. Levine explained that the steroids, chemotherapy, and radiation have all affected his growth and that we probably won’t see a growth spurt until he has finished all the transplant related medications. On to the blood counts…
White Blood Count 2.5 normal is normal is 4.5-13.5
Platelets 149,000 normal is 150000-450000
Absolute Neutrophil Count 1200 normal is 1800-10100

I was really hoping that those numbers would be higher by now. I even asked about the possibility of the marrow transplant failing at this point and he said not to worry. Of course, I do! There was much discussion about Henry’s dry skin. His face and scalp are terribly dry, flaking and he has several small circles of raised rash throughout his arms and legs. This led to a debate between Dr. Levine and Deb (our favorite nurse practitioner) as to whether the steroids should be stopped. Henry was sitting and listening to them (which is RARE) then looked up and said, “Well just who is the expert here?” I almost croaked. I wanted to crawl under my chair. But they rescued me when they both almost in unison said “You are Henry!” Oh the things that child says. Ultimately, the steroids were stopped! HOWEVER, another medication was added and he still has medications twice daily, so my brain still has to be programmed to remember twice daily medications. You would think that would be easy after so many years of it, but I still forget sometimes. Overall the visit went well. The return visit is March 11th, which is 9 weeks away. He will still need a breathing treatment in a month to prevent pneumonia but I think he can go somewhere close to get that. Also, he doesn’t have to go for bloodwork until the next visit. Of course, if he begins to show signs of an infection or my motherly instinct tells me that he needs bloodwork, then he can have it before the next visit. It is just amazing to me that these gaps in between visits and tests are getting longer.

I was able to attend the visitation for Justin on Tuesday, while in Michigan. Renee (Maddie’s Mom) met me there. We were able to share some special time with his parents and say a prayer for him during our visit. It was a very moving experience for all of us. I was especially touched when I saw pictures of him as a little boy. Blonde, cute, funny…it was surreal to me. Another Mom losing her firstborn….I could hardly contain my sadness when I saw the picture of her holding him as a newborn. Henry knows that Justin has passed away. When Patrick told him, he asked “How do you know?” He hasn’t asked about it since then. He was asleep in the van with Granny Duck watching over him while I attended the visitation. We worry that at some point, he will face the sadness of the passing of his friends from 7 Mott. We haven’t told him yet, but another friend from the unit passed away this weekend. Morgan was 21 and floated between the adult and pediatric bone marrow transplant units depending on the number of beds available. She loved being around the younger children, and moved to our unit when it wasn’t full. Her first transplant was the day after Henry’s first transplant. Henry made her a card and gave her some of his “Happy Birthday” balloons for her transplant birthday. She and her mom both always checked his website and wrote messages, so I know she loved Henry.
Lately, with all of the losses in our lives, Patrick and I both have been really sad. It does make me appreciate the little things with the boys. Like today, they donned hand puppets and were all running in a circle with music blaring. I had a thought-Thank God that the three of them are together…of course that thought was interrupted when one of them began to attack the other with the hand puppet and the screaming and yelling erupted. I do have those special moments of gratitude almost daily and I am so happy to experience them.

We have the final dates for the Make a Wish trip. It is February 29th-March 3rd. I am so happy that Henry will be able to experience his trip while he is feeling great. All five of us will fly to Los Angeles and attend the Lakers vs. Mavericks game on that Sunday night. We are not certain of any other things that they have planned for us, but we were told that he will be able to meet Kobe Bryant. This is a wonderful organization, many times granting wishes to children with less than a week to live. If you would like to be a part of making a dream come true for other children in our state with a potentially terminal illness, they accept donations online or by mail.
Angelette Pryor
Director of Program Services
Make-A-Wish Foundation of Central and Western Virginia
2810 N. Parham Road Suite 302
Richmond, VA 23294
804-217-9474 phone
804-217-9484 fax
http://www.wish.org/chapterlocate/results?state=VA

If each of us stuck a dollar or two in an envelope and mailed it to them, they would probably easily receive $1000. This would not benefit us directly, as our trip has been planned, but could possibly help the next child in need of a wish.

I am trying to decide on a date for the Bone Marrow Transplant celebration. I was thinking of Saturday, May 31st at the park in Radford. The meeting with the donor is supposed to be the 17th and Memorial weekend is the 24th, so I thought the following weekend would be our last chance to schedule it before summer vacation begins. Please feel free to email me your thoughts.

Also, there is a bone marrow drive in Blacksburg on Saturday and Sunday, January 26th and 27th at University Mall in Blacksburg, from 8am-4pm each day. The cost is $25, but waived for anyone who is unable to pay.
Thank you for your time and interest in Henry. I plan to update again after his Make a Wish trip.

Angela

My email address is armpkm@jetbroadband.com or armpkm@aol.com

Sunday, January 13, 2008 9:08 AM CST

This week was packed with things to do and today is no exception. I am packing warm clothes for our trip to Ann Arbor tomorrow. We hope to avoid snow and ice and to stay as warm as possible. School is out on Thursday and Friday this coming week, so it looks like Henry may be able to have a week off from school. If we return late Tuesday night, I am sure that he will be up and ready to go to school on Wednesday morning. He really does enjoy being back in the classroom.
Patrick’s birthday was Tuesday and then Henry’s was on Friday. Henry had his last basketball game this week and their team party was on Friday night. His birthday party was yesterday. We had 13 boys here at the house, which was a real experience in itself! The party theme was Fear Factor and there were 8 stations set up to test their Fear. Some examples were Pig Snot-(cool whip with green food coloring), Armadillo Blood-(syringes filled with V8 juice), and Dirty Baby Diaper (chocolate pudding and baby food peas mixed together and placed in a diaper). It was a perfect party for boys and no one vomited. They all received a T shirt with “I survived Henry’s Fear Factor Birthday Party” and the top score received the movie Ratatouille and the second and third place scores received gift certificates to Sonic. Henry actually placed second, but being the birthday boy, he was exempt from the party prizes! I have added some photos on the Flickr website and will add more later today.

http://www.flickr.com/photos/henrymoore/sets/

Today we learned that another dear friend from 7 Mott has earned angel wings. Justin, who was the beloved son of Robin and Mike and older brother to Jenna (who was his donor). Justin and Henry bonded by discussing hunting and football. I admired their close knit relationship and their obvious love for each other. This family has been challenged many times by cancer. Justin faced every battle with courage and a positive attitude. His strength over the last month has been nothing short of amazing. He has a website with great photos, some that were taken on New Year’s Eve. www.carepages.com enter thebears (no space) as the page name
It is hard for us to embrace the fact that he has passed. He looked so good when we saw him back in November. We haven’t told Henry yet, and don’t know how and when we will. We had hope that our little group from 7 Mott would at least meet the 50-60% survival rate that we were given. That has not happened and has been quite a source of discouragement for us. Please pray for his family. They love him so much and need much strength to get through this next week.

Angela and Patrick

Saturday, December 29, 2007 10:14 PM CST

The boys had a great Christmas but not before a last minute panic from Henry about his poor behavior last weekend. After reading “Twas the Night Before Christmas” on Christmas Eve, he began sobbing and saying that he guessed that he would be getting “only coal in his stocking.” Patrick reassured him that Santa did base his judgment on the entire past year and that seemed to ease his anxiety. They awoke Christmas morning with such excitement, and with no knowledge that Patrick’s mother was near death.
Yes, the nursing home called Patrick and his sister Beth on the 22nd to alert them that Shirley had rapidly declined that day(Callie was in Canada on holiday with her family). The next few days, they both kept vigil by her bed, and finally she left us around 8:30 or 9:00 am on Thursday the 27th. That last 5 days was a real struggle for her and for her children to bear. Her death became a blessing and therefore, we are all doing well. Her funeral was today and was a beautiful celebration of her life. We were comforted by the presence of many of our friends and the knowledge that Shirley is now free from blindness and immobility-both consequences of her battle with Multiple Sclerosis. She was eulogized by Ginger Burggraf, who brought her communion each week, by Patrick who was so strong, and finally by Henry who thanked God for her prayers for him during his last 7 years and transplant. The ladies of our church hosted a luncheon afterward which allowed us time to spend with the many people who loved her. It truly was a comforting experience. I have included photos of her grandchildren, which she so dearly loved. It was great to have them all together again. Three of the older young men are in college, and Candice, the oldest, is now employed at the White House, so our times together are limited.
Some of you may remember my posting about Mr. Wilson, who helped to raise money for marrow testing for Henry. He was assaulted and beaten with a tire tool at his gas station this past fall. As I understand it, he never really was able to walk or talk again after the accident, but had begun to make improvements here recently, only to die on the day after Shirley passed away. Our thoughts and prayers are with his sweet family and all of his buddies that will miss him so much.
We will celebrate the New Year with wishes for many fun times in 2008. We have so many exciting things to anticipate…Henry’s 8th birthday on January 11th, his Make-a-Wish trip to Los Angeles on March 2nd to see the LA Lakers play the Dallas Mavericks (and to meet Kobe Bryant), His first Communion on May 4th, his meeting with the donor on May 18th, and his Transplant Celebration in June. I hope the remainder of 2008 brings us as much excitement as the first half and I am sure that it will.
Henry’s return appointment to University of Michigan is January 15th, which means that we will be traveling on the 14th and the 16th. You may have read that Ali Aardema passed away just before Christmas and Justin Nunamaker is fighting a very aggressive return of his cancer and needs your prayers.

Happy New Year to all of you who continue on this journey with us. May God Bless you and bring you health, joy, and prosperity.

Angela

Wednesday, December 19, 2007 8:13 PM CST

Angela brought Henry home from the hospital tonight about 6:15. After numerous tests in the hospital, Samuel's symptoms confirmed that Henry most likely had a virus. As usual, Dr. Gehrz and Dr. Samples took great care of Henry. It was nice to see some old friends on the pediatric wing at Carilion. So many memories flooded my thoughts. It seems like only yesterday we first checked in with Henry...Not knowing if he (or we) would survive the devastating diagnosis. We not only survived; we (with much help and many prayers) CURED HENRY! Sam is not as sick as Henry, but feels really rotten. Shelby Brooks came and helped with Harper and Sam before Angela and I got home. She is a terrific "Parent's Helper".

Angela came straight home and began cooking! I think we watch the Food Network too much. I haven't mastered typing with a cast, so I will keep this short.

We have recieved so many "Believe" cards, ornaments and plaques. Thank you so much. They remind us that each day brings something for which to be thankful. Each one is special to us and will be treasured for years to come.

Thank you for your prayers and good thoughts. We will write again soon. -Patrick

Tuesday, December 18, 2007 1:17 PM CST

As I typed “until 2008” last week, I wondered if I had somehow jinxed our luck. I also caught myself trying to decide whether or not to unpack my overnight bag and Henry’s bag of medicines. Both have been “packed and ready to go to the hospital” since our days in the apartment in Ann Arbor. I decided to leave those in place, but that didn’t seem to help.

Last night at about 10pm, Henry began vomiting. It did not respond to anti-nausea medication and continued about every half hour. I called Dr. Gehrz at 6am who wanted to see him in his office at 8am. I had to literally carry Henry to the car (Patrick’s arm is still casted and healing) as he was not able to even support his weight. Every few feet, I had to stop and bend him over to allow him to heave. We arrived early at 740 and Dr. Gehrz, was there waiting on us. Henry was down to 48 pounds and unable to even sit up on the table in the office. When Dr. Gehrz asked about how many times we thought he had vomited, he looked up and said, “About 10,200 times.“ It was all I could do to keep from laughing.

Last night was a horrible reminder of our days on 7 Mott, when he was so pale and thin and so very tired from all of the vomiting. I have to admit that my mind was wondering what could possibly be wrong. It just developed out of nowhere. Dr. Gehrz decided that IV fluids were necessary and Henry was admitted to New River Valley Medical Center early this morning. He is already much better after a bag of fluids and IV anti-nausea medication. He has begun to take sips of water, but his tummy is still queasy. All of his blood counts look better than 2 weeks ago, with the exception of the test for dehydration. He was severely dehydrated and unable to swallow any of his essential medications. His recent vitals revealed the presence of a temperature of 100 F-hopefully it will cease and not deter our exit out of here tomorrow.

In the depths of fatigue, I just wanted to cry this morning, thinking about all that I wanted and needed to do today. But I couldn’t. We have other friends that keep us mindful that a local hospital admission for dehydration is just a blimp on the radar. Our friends are being challenged much more than us.

Justin Nunamaker, the 15 year old transplanted the same day as Henry, is back on 7 Mott receiving radiation to remove a tumor that has returned after his transplant. He should be at home with his very special family, enjoying the Christmas holiday and anticipating his Make-A-Wish trip to Hawaii. However, he is fighting the return of cancer into his body for the third time. Another transplant is scheduled after the treatments to remove the tumor.
Our other friend Ali Aardema is another 15 year old who is struggling with a lung infection, complicated by kidney trouble. She is in the pediatric intensive care unit and fighting very hard to win her fourth battle with cancer. She, too, should be at home with her two sisters and wonderful parents.

I want to ask each of you to take a moment out of each day to say a prayer for those two families. It all seems so unfair to me. I want to rejoice for Henry, for Maddie Thelen, for Haley Ray and for my brother-in- John-who are all here with us to celebrate Christmas -but I feel so much sadness for the loss of Gavin, of Abbie, of Pam, and the sickness of Justin and Ali. That awareness does make the happy moments in our family’s life -little miracles to bring us ever closer to the meaning of this season.

I will update again tomorrow.

Angela

To follow along with Justin and Ali go to their page at

www.carepages.com

pagename for Ali is: AliAardema
pagename for Justin is: TheBears

Thursday, December 13, 2007 8:23 PM CST

Henry is doing great at school. He is earning “kid cash” like crazy. Yesterday, he was able to name the 5 Great Lakes, three of which he saw this past year. He has some real strengths and some real weaknesses, but he is going to prevail. I know that the staff at McHarg will help to get him to his best, by the end of the school year. He has not had any trouble with stamina and has returned to the full day of school without any problems. He loves P. E., their recent unit on King Tut, and the ability to be around his friends. He is still eager to get up each morning, taking pride in picking his outfits for each day. Wow, what a miracle.

Our family Christmas is going to be a great one. We started celebrating upon our return from the Michigan appointment in early December. We have been doing many different memorable things like decorating cookies, constructing and decorating a gingerbread house, traveling to Shawsville (VA) to see the abundance of Christmas lights, and we have already visited the big guy himself. We have truly embraced the season and have really tried to slow our family’s pace to enjoy ourselves. Unfortunately, Patrick fell on the ice in our driveway last Friday and fractured his lower arm. Luckily, it was his non-dominant left arm. He is in a cast for about 6 weeks, so that has been a real bummer. Yesterday, I mailed just over 450 Christmas cards and I hope that each of you reading this will get one. If I inadvertently missed you, please send me an email with your address and I will get one to you.

I returned to Pulaski Hospital today to update my personnel record with CPR certification and the other required in-services, so that I can return to work in January 2008. I plan to work 2 days each week, allowing me adequate time to spend with all three boys, while attending to my desire to rehabilitate the elderly. When I drove into the parking lot at the hospital today, I saw many believe stickers. I had to sit in my car for just a moment to stop the tears. As soon as I entered the Education Center, the hugs and smiles were abundant. It was so great to be back there today. What a great place to work!

I have added over 200 new photos to the Flickr website. I hope that you are able to click on the link below and get to it. Included are photos from the November trip to Michigan, the tour of Hendrick Motorsports, the Charlotte Bobcats game, Thanksgiving, Henry's First Reconciliation, the Radford, Christmas parade, the deer hunt, and the visit with Santa Clause. We hope that you enjoy them.

Oh yes, I wrote in my last update that Henry's Summer weight gain was from the antibiotics. What I meant to say was steroids. I am not sure what I was thinking when I typed that. Guess I was in the middle of writing those 450 Christmas cards....

Until 2008, Angela

Here is the Flickr link. Copy and paste in your browser box and hit go!

http://www.flickr.com/photos/henrymoore/sets/

Wednesday, December 5, 2007 8:25 PM CST

Day 203 after the second transplant

Yes, it has been that long already! If you check other websites, you will notice the most parents start out each journal entry with the plus sign and then the number of days after transplant. Well, I did do that until the first transplant didn’t engraft and Dr. Levine told me to stop focusing on that. Also, two wise women from Radford emailed me and told me to stop counting or I would go crazy. So, I quit-cold turkey! The funny part of this story is that now, I never know what day after transplant that it is for Henry and thankfully, he has a “transplant twin”, Justin Nunamaker, whose mother keeps me accurately informed!

So, to the details…. We had excellent weather for the drive. It was cold and windy, but that is to be expected for winter weather in Ann Arbor. Henry traveled well, as always and we arrived in Toledo, OH before 6pm on Monday. Nurse Kishta lives just outside of Toledo, so we drove to her house to surprise her, and we did. She couldn’t believe the changes in Henry, emotionally and physically. They cuddled and snuggled and we giggled about old times for a little over an hour. Kishta was Henry’s primary nurse and she called him “Henry J” from day 1. (You know, like Michael J.) She has been known to talk more about Henry at her dinner table than her own three children, much to the (teasing) dismay of her family. However, she and Henry did spend a lot of time together this year. I can honestly say that she and I took the brunt of his anger and discomfort during his hospitalization. He once asked her for nausea medicine, and while she and I were discussing what he was scheduled to have, he screamed “Now step on it!” to her. He also, once told her to “put her back into it” when she wasn’t getting his nausea medication fast enough and the famous line is “double time it”. Nausea will make you do and say crazy things, especially nausea from the chemotherapy, radiation, and the graft versus host disease. At least there was a little humor in his horrible disrespect and she said that there was hardly a day that went by, that his famous lines were not repeated in the nursing lounge amongst lots of laughter. It was so great to see her and for her to see Henry with no ports in his chest, no chubby cheeks from the steroids, and with a head full of brown wavy hair.

On Tuesday, we arrived early for our 830 am appointment and saw Dr. Levine and Deb, his “favorite nurse practitioner” and ours too! They were both pleased to see and hear that Henry’s lungs are clear, that he has maintained his weight of nearly 51 pounds and that he remains to desire to be the center of attention!

The official blood counts:

White blood Count 2.6 normal is 4.5 to 13.5
Hemoglobin 11.6 normal is 12.5 to 16.0
Platelets 164,000 normal is 150,000 to 450,000
ANC or absolute neutrophil count 1100 normal is 1800 to 10,100

As you can see, Henry’s counts continue to be in the low range or just below the low end of normal. Dr. Levine feels that this is how it is going to be for Henry right now, and there was no need for a Neupogen shot this time. I was thrilled with that. I was beginning to feel that Neupogen was going to remain a part of our lives forever, but maybe, just maybe, the last shot that he had, will be his last shot. Let’s hope that I didn’t jinx his luck. The big news is that we have a 6 week break until his next appointment in Michigan and that he was given approval to school.

As we were leaving the Cancer Center, we saw Justin Nunamaker and his mom, Robin. He and Henry talked hunting and football and she and I talked about the fact that we would love to have them in Virginia for the transplant celebration. It seems that they want to attend, Maddie Thelen and her family want to attend, Kishta and Erin want to attend, and I want to ask Mashawn and Aiden (Gavin’s mom and brother) and the Morgan’s (Abbie’s family) to attend. It will be wonderful for all of you to meet the families and staff that became our Michigan family. I need to get a date planned, so that everyone can begin some real planning for this exciting event.

I will post again sometime before Christmas, especially if anything arises. We have a “Believe” tree set up for Henry and we have two banners from the parade that we are willing to share if anyone is interested in displaying one at their church or somewhere outside, during the Christmas season. Just email me.

EVERYTHING IS POSSIBLE FOR THOSE WHO BELIEVE~
Angela

Wednesday, December 5, 2007 10:31 AM CST

We arrrived home at 1am this morning and Henry woke up at 8am wanting to go to school. Yes, Dr. Levine gave the approval for Henry to return to McHarg and today was his first day of school in almost a year.
I will update with more details from the visit to Michigan, as it was a good one. Our return visit isn't until January 15th.
Thank you McHarg Elementary for being such a special school. Your smiles and concerns are priceless.
Angela

Monday, December 3, 2007 8:37 PM CST

Last week was a very exciting one in the Moore household. Last Wednesday, Radford Sheriff, Mark Armentrout, took Henry and me deer hunting on his friend, Tommy Franklin’s land. Tommy and his family were very generous to us, and even let Henry use their “youth-sized” rifle. The rifle season was almost over, and Wednesday was going to be our only chance. I just hoped we would SEE a deer. I tried to prepare Henry that hunting was a sport, and that if you killed (or even saw) a deer every time you hunted, it really wouldn’t be as much fun. I was really just trying to keep him from crying if he didn’t get a deer. We waited for about an hour and 15 minutes, and Mark spotted a deer. It was a terrific shot, but he let Henry shoot at it anyway. The deer jumped like it was hit, but alas, he missed. Then, Tommy ran up to us and told us he spotted three deer on the other end of the property. It was getting dark, and my vision isn't what it used to be. Although I didn’t see them at first, Henry spotted the deer right away. He was nervous, but took the shot. The deer dropped in its tracks. Henry screamed, “I got ‘em! I got ‘em!” Then he did his “celebration dance”. Before we ran to the deer, he yelled, “I’ve gotta’ call Poppy!”. Angela’s dad is an avid hunter and he and Henry had a hunting trip planned in Texas that Henry missed because of a lung infection. Henry helped Sheriff Armentrout clean the deer, and then we took it to “check it in” at the Sportsman. When Henry told him his name, they said they knew him and were going to put his picture up on the wall with the “Hunter’s Hall of Fame”. Next a trip to the meat packer, where we kept a small amount of meat to eat, and donated the rest to “Hunters for the Hungry” which provides the deer meat to the needy. Finally, Sheriff Armentrout took Henry and the deer head to Anthony Blackburn, a local taxidermist. Anthony has the reputation of being the best in the Southeast, so Henry’s mount is in good hands. Henry has been on cloud 9 since that day. He has begged to keep the deer head in his bedroom. I told him it would depend on his behavior; however, Henry’s room is probably the ONLY room in the house that his mother will allow the mount.

Saturday was a big day, too. Henry made his first confession, in preparation for making his first communion in May. I worked with him on Friday evening, and we made a list that was a full, double-spaced page. I finally told him that was all Fr. Ken would have time for. He was very solemn, and I think he “told it all” in confession. He felt better, and so did I. I was really proud of him, and it is certainly a rite of passage gently telling us that “Baby Henry” is growing up.

Finally, Saturday afternoon the Kiwanis Club honored Henry and our family by asking us to be Grand Marshals for Radford’s Annual Christmas Parade. The theme was, “Everyone is a child at Christmas”. We had the privilege of riding on an antique fire engine that was faithfully restored by Benny and David Ridpath. (Benny and David restored a 1965 Ford Mustang pedal car for Henry several years ago.) It was great fun, and really exciting. We saw lots of people we knew, and many we didn’t. People were yelling, “Way to go Henry!” and “Hey, Baby Henry!” One lady yelled at us and held up a star that said “BELIEVE”. Of course, that made us teary again. That experience is one that none of us will forget.

Angela and Henry just arrived in Ann Arbor for a check up. I worried about them driving and the bad weather ahead. Diane Fest and her prayer warriors prayed for Angela and Henry as they drove. We are expecting and BELIEVING he will get a good report.
Thanks for all of the support we continue to receive. Please pray for the families on 7 Mott who are facing the loss of their children, and the ones who won’t be with their families this Christmas. -Patrick

Saturday, December 1, 2007 5:30 PM CST

This was a week of many "firsts" in the Moore household. Henry killed his first deer on Wednesday, made his First Reconciliation today, and we were the Grand Marshal's of the Radford Christmas Parade today. I have added photos on the main page and 3 addditional photos -just click "view photos" above this update.

I will have Patrick give you full details in an update tomorrow evening. On Monday, Henry and I are leaving for Ann Arbor. I hear there is snow there, so say prayers for safe travels.

Henry is doing great. Thanks to all of you for your kind comments regarding my last update.

Angela

Wednesday, November 21, 2007 7:53 AM CST

I hope that you all have a wonderful Thanksgiving weekend with your families. I am going to post a note that I wrote to our local paper. The words in it kept popping in my head for several days, finally prompting me to sit down and type it out on paper. With approval and encouragement from Patrick, I sent it to the Current and the Radford News Journal. The Journal published it along with a photo of us wearing our Believer T-shirts. I thought of each of you reading this page as I typed the words of the note. I truly am thankful for each of you. We are off to Birmingham to my Mom's for Thanksgiving-really the best one ever. The boys are excited that they will see their new cousin Callie. We will make our next trek to Michigan on December 3rd for our appointment on the 4th.
With a grateful heart, Angela

For these things, I am thankful

It is easy to let the news of the war and Wall Street ambiguity rule my mind and create fear and anxiety. Therefore, I make a conscious, daily effort to remind myself of the things of which I am certain and thankful.

I was born in the safety of the boundaries of the United States of America, where freedom truly is a blessing. A citizen of a very small rural community in south Alabama, I was eager to leave and experience life. My two younger sisters and working parents wouldn’t dream of stepping into my path. That path, thankfully, led me through 4 years of college, ending with a degree and a successful career as a physical therapist. I had the blessing of being blessed by wonderful people that I was supposed to be rehabilitating! Opportunities arose and I made the brave decision to move North, with my parents secretly frowning, for they needed a reminder of the actual location of the Mason-Dixon Line.

A new community welcomed me into its arms. Well really two communities embraced my southern accent and dimples. Radford, my new hometown, provided many new friendships and my future husband. Pulaski Hospital provided me a cozy atmosphere to foster my professional skills, and would eventually prove their motto, “We’re your friends for life.”

My loving husband secured our residence in Radford by establishing his law practice and becoming a beloved counselor to many. We were blessed with the birth of three boys, and stunned when we learned that our oldest would require a bone marrow transplant to survive. We decided to make this diagnosis and our attempt to save him a very public matter. We needed many volunteers to join the National Marrow Donor Program in an effort to find his perfect match.

Many learned of our son, the description of the rare illness that he inherited, the dire need to locate a bone marrow donor, and the manner in which a transplant would be performed. Seven years passed and he still did not have a match. His wonderful pediatrician and our friend, Dr. Richard Gehrz, managed his medical care, ensuring each decision that he made would promote success for Henry’s future bone marrow transplant.

A few moments of quite time during a family vacation in 2006, provided the opportunity for my husband to read about an expert in the field concerning my son’s disease. Eventually, I would make time to use the internet to locate him and send a short message. Surprisingly, these events are what would eventually lead to the transplant procedure. This expert, Dr. Laurence Boxer and his colleague, Dr. John Levine would meet our criteria to provide medical care to our son.

Our communities positioned themselves around our family, almost like a fortress that secured us during the temporary move to Michigan in March 2007, and unpredictable days ahead. Our church, St. Jude Catholic Church, demonstrated true love and concern for our family. Its members provided prayer, transportation for our visitors to Michigan, monetary donations, food, and visits to my husband’s ailing mother. It would become an example for other churches who followed…Grace Episcopal Church (our neighbor), First Baptist Church in Radford, First Christian Church in Radford, Central United Methodist Church in Radford, Gethsemane Baptist Church in Radford, White House Fork Pentacostal Holiness Church in Alabama, First United Methodist Church in Blacksburg, and WBLB and it’s listeners. Many other churches have had my son on its prayer list and mailed cards of love and support, which were equally appreciated. Thankfully, prayer, concern, love and caring proved to be non-denominational. We were blessed by love and strength from our Jewish friends, atheist friends, Christian friends, and Catholic friends.

Each day our mailbox overflowed with cards and boxes of gifts for my family. Miraculously, our refrigerator would be filled with meals. Henry’s website, which logged over 163,000 hits, relayed messages of love and encouragement to our family, and became a daily ritual for many. People we had never met were urged to contact our family to show support. Each person that felt the need to do something, responded to that urge, and directly attributed to my son’s success. Your graciousness made my family feel loved. During a period of such anxiety, I felt more joy than ever. Now I have the joy each day, of looking at my son as a survivor. It is truly a blessing and would not have been possible without each of you. For these things, I am thankful.

Monday, November 12, 2007 7:07 PM CST

Hello to all of you. We had an exciting time at the Charlotte Bobcats Basketball game last evening. The arena staff, The Jeff Gordon Foundation, and The Hendrick Marrow Program ensured that our every need was met and that the children enjoyed themselves. The food was prepared and delivered “hot and ready” to our suite so as to prevent any food borne illness. Rufus, the Bobcats mascot and the Bobcat cheerleaders visited our suite as well. Patrick enjoyed that more than the boys and I am so happy that he has been diligent with his vitamin regime and blood-pressure medications, or I am certain that he would have suffered a heart attack amongst all of that beauty! The cheerleaders were indeed pretty and so very kind to the children. They were especially fond of Henry and Sam. The Bobcats played the Houston Rockets and lost in the last few seconds, after leading for the most of the game. It was a great experience for our first-ever NBA game.

This morning we ate breakfast at the Concord Waffle House. That is like fine dining for Henry. He absolutely loves the Waffle House and the ladies at the Christiansburg location actually email me occasionally to check on him. The Hendrick Marrow Program and the Wingate Inn provided our room last night so that we would not have to drive back home so late. This also allowed us to get an up close and personal tour of Hendrick Motorsports in Concord, today. We had a great time. Courtney Peak Hurd, from Fairlawn, gave us the most awesome tour. She introduced us to each passerby, including Jimmy Johnson’s crew chief! Every person there was exceptionally kind and treated us like we were family. The boys actually touched each and every trophy that Jimmy Johnson and Jeff Gordon have won AND they pulled confetti off of the car that Kyle Busch drove (and won) in the Busch series race this past Saturday night. They received special caps, were able to sit in the go-carts that Jimmy and Jeff drove as children, and learned how all of those sponsors’ stickers are applied to the cars. Henry actually mastered the ability to remove and replace the steering wheel on the stock car to allow entry into the driver’s seat and may have been converted to a Chevy fan after today’s visit. (I will tell you that he selected a Dale, Jr. #88 shirt in the souvenir shop-but please don’t tell Poppy.)

This was a great experience for our family. We did decide to leave Harper with Miss Karen and her mother so that we would have the freedom to speak with the other families and members of the foundations that provided such a wonderful opportunity to us. I am grateful that Henry is here with us to enjoy these fun times.

BIG NEWS……The Hendrick Marrow Program has invited our family to Charlotte in May of 2008 to meet Henry’s donor. This will be during their big fundraising event which will be attended by Mr. Hendrick himself as well as those from the National Marrow Donor Program. We are so happy that they have selected Henry and that we will be able to personally thank Mr. Hendrick, the NMDP and Henry’s donor.

Henry is doing great. He has stopped coughing and his counts are back up with only one shot of Neupogen. We want all of you to know that we really do appreciate the time that you take out of your day to check Henry’s status on this website.

Thanks again to Trish at The Jeff Gordon Foundation and to Pam and Courtney at The Hendrick Marrow Program. We felt like VIP’s last night and today and the boys loved it!

I added four new photos-click "view photos" at the top of this page to see them all.

Angela

Thursday, November 8, 2007 12:31 AM CST

I must say that I do feel my age after this trip to Ann Arbor! Luckily, we did not encounter snow, but it was cold and windy there, much like the weather here. We loaded the van and backed out of the driveway around 830am on Monday. I said, “Well Henry, here we go again.” He said, “I know and I hate it. I wouldn’t want to go up there if I didn’t have such great friends there.” I was shocked! He really is the perfect adolescent traveler. He is never any trouble except for the few times that he announces his need to potty. He never gives adequate warning and it usually ends up with him begging me to pull over and let him jump over the guardrail and just go into the woods! He has also been known to pass a previously empty water bottle to the front with a strange yellow liquid in it. Surprised and disappointed, I asked, “How did you learn that?” He said, “Oh, I saw it on the movie Dumb and Dumber!” Need I say more?

We had an early appointment for bloodwork on Tuesday morning, followed by a long walk from the cancer center to Mott’s for a pulmonary function test. He performed terribly on it, but improved some after a nebulizer treatment which we failed to do that morning. Then we walked back over to the cancer center-this really is a long haul- for our regular appointment. We saw Dr. Levine, who was most impressed with Henry and his head full of brown hair. His weight is stable at 52 pounds, down 13 pounds from his all time high of 65 pounds during the height of steroid doses. He has grown 1 inch since his transplant and tries to fool the nurses by lifting his heals each trip to get another half inch on the chart. His blood pressure is perfectly normal, but his neutrophil count was down. The neutrophils are the cells in the blood to fight bacteria. A level under 500 with symptoms of an infection, is serious, usually requiring a hospitalization and IV antibiotics, between 500 and 1000 moderately serious-requiring Neupogen to get the count to jump over 1000. A count of 1000-1500 is better, but the normal counts can be as much as 10,000! His neutrophil count on Tuesday was 800 and Dr. Levine felt that the Bactrim (antibiotic that he was taking for the lungs) was causing the low count. So, Henry took an aerosolized medication called Pentamadine (that lasts a month) and the Bactrim was stopped. Both medications act the same way, so hopefully the counts can now increase. In addition to stopping the Bactrim, the steroids were decreased to every other day doses-what Dr. Kitko called “only a whiff” of steroids-ha!

After the appointment with Dr. Levine, we trecked back over to Mott's for an echocardiogram and then to the outpatient center for a hearing test. It seems that the only test that we haven't had is the eye test. Most of these tests at various intervals after the transplant check for any damage to the organs after the high doses of chemotherapy and/or radiation. I haven't heard about any problems from the tests, except the pulmonary function test, which was no surprise to Dr. Levine.

Here are the other counts…

WBC (White Blood Cell count) 2.4 normal is 4.5-13.5
Hemoglobin 12.9 normal is 12.5-16.0
Platelets 180,000 normal is 150,000-450,000
Absolute Neutrophil count 800 normal is 1800-10,100

The platelets and hemoglobin are increasing each visit, so hopefully, the other cells will slowly get into the normal range, and we will know that the new marrow is feeling cozy in its new home. Speaking of marrow, we still have not heard from the donor. Dr. Levine mentioned that the donor may be deployed in the military and I had never thought of that idea. Whatever the delay or absence of communication, we still are grateful to him and hope that he knows how happy we are that he donated life to Henry. I will try to get a note to him around Thanksgiving and hopefully that will inspire some written communication between us.

Dr. Levine ordered a shot of Neupogen due to Henry’s low neutrophil count. We all keep thinking that he has had his last dose of it, but he gave himself yet another shot last night. It was a very small dose, 0.3ml (before transplant, he received 2.5 ml TWICE a day). This very small dose caused his new marrow to start multiplying and he woke us last night around 2am with severe bone pain. It took massage, pain medication, and nausea medication to finally get him back to sleep almost 2 hours later. I am VERY tired today. He just came to me, telling me that he was hurting again. This is a very normal side effect of Neupogen, but funny enough, he never, ever complained of this type pain for the 7 years that he took such large doses. This is the same medication that the donors take prior to donating, so this pain/suffering reminds me of the discomfort that the donors can experience. I do not want to frighten any of you from donating, I just want to remind myself of this wonderful and unselfish gesture from him.

I know this is a long update, but just two more things…
We have a special visitor coming to Radford this weekend. Erin Baum and her friend Dan will be coming to visit us. She is a nursing tech from 7 Mott and was a huge help to me when Henry was at the apartment. We want to show her around our wonderful town and hope that we see some of you while we are out and about. Second, we have been invited to the Charlotte Bobcat arena in North Carolina on Sunday evening. The Hendrick Marrow Program and The Jeff Gordon Foundation are hosting a suite for special guests - all transplant families. There will be four other transplant recipients and their family/siblings. Courtney Hurd, who hails from Fairlawn, VA has offered to give us a much anticipated tour of Hendrick Motorsports on Monday morning. We are so excited about this opportunity to meet other transplant survivors and their families. I/We have a lot of work to do for the marrow programs and this networking will help.

Sorry for the long update. I had more stuff to say. It was probably too deep and gushy, so I’ll wait until I get some rest and can dig a little deeper into my heart.

Love, Love to all of you who still find time in your day to check on us,
Angela

Sunday, November 4, 2007 6:30 PM CST

Please accept apologies for failing to enter an update on Henry in over a week. My internet service was interrupted when Suddenlink switched over to Jetbroadband, hence my new email address at the bottom of the page. I finally took time out on Saturday morning to call the new cable company, only to find that it was a glitch in the system.

This past week has been quite interesting at the Moore household. Samuel had a temperature of over 100 for almost a week, and Harper joined him after about 3 days. Amazing enough, Henry escaped the virus that was ailing the two of them. Henry did come to us one night and say, “I do believe that those two boys just need to get a tube down in their lungs like I did and they would be a lot better off.” We just laughed, but realized that he must feel so much better to make a comment like that. His coughing has all but ceased and for that we are thankful. There is still some congestion when he occasionally coughs, but nothing like he had for almost a month. The cultures of the fluid from his lungs grew a mold, but nothing pathogenic ever showed up-for that, too, we are thankful!

The Moore boys were not able to Trick-or-Treat, but the end of the week provided a ton of fun with Samuel’s 6th birthday party. We took 12 children to see the new Bee movie and could not have survived without the help of cousins Ben and John. Beth and John were there to celebrate as well.

Henry will not be able to make his November hunting trip out to west Texas with his Poppy and Uncle Jason. He really is not sad as he quickly tells us that the hunting in Alabama is much better than the hunting in Texas! We are hoping that he will be able to curb his desire to hunt sometime this winter in Alabama. There are a few folks here in Radford that are determined to help him get his first deer ever, so the race is on to see where, when and if Henry shoots a deer this season.

We are leaving early in the morning for Ann Arbor. The weather channel is predicting snow flurries on Tuesday, which is about the same weather that we experienced on our first trip there, just a year ago. A lot has happened in this past year. It is amazing and frightening to really contemplate it. We are so lucky to have met the transplant team and our fellow 7 Mott family.

Tuesday’s visit will be jam packed, so I may not update until late that evening or sometime on Wednesday. If anything unexpected should arise during the visit, I will certainly have Patrick update the website as soon as possible.

May God bless you all and especially the Eley family from Pulaski.

Sincerely, Angela

Sunday, October 28, 2007 6:34 PM CDT

Hello All-

Sorry for the delay in the update. Patrick and I finally celebrated our anniversary this weekend. We actually share that date with the Harveys, the Stewarts, the Hemphills, and the Fenders. Yesterday, we and the Fenders drove to Charlottesville and enjoyed such a beautiful fall day. We actually ran into Dr. Athena Howard-who, with her son, won the parent/student run on Saturday during Parent’s Weekend at UVA. It was a fun time and I enjoyed my first trip ever to that beautiful town.

I was completely exhausted after the road trip to Ann Arbor last weekend. It took me two whole days to recover. Henry did well with school last week, but had a hard time sitting still since he had been confined to the car or hotel room for most of 5 days. He is doing well despite the news that a mold started growing from the cultures that were obtained during the bronchoscopy last Friday. Dr. Levine and Dr. Gehrz have been in contact and currently there is nothing to change unless the mold grows into something pathogenic-which means-causing or capable of causing disease.

So far, the cough is better. Thank you all for your concern and prayers. We will be leaving for Ann Arbor on Monday, Nov.5th for his appointment on Tuesday the 6th. He will be close to his 6 month post transplant mark, so they will do some other “180 day tests” that day too. He is scheduled for echocardiogram/EKG, vision exam, hearing exam, pulmonary function test, and an appointment in the BMT (bone marrow transplant) clinic. Whew-we will be running all over the place that day!

Henry will return to Dr. Gehrz again on Tuesday. I will update again with any new information as soon as I get it.

Angela

Wednesday, October 24, 2007 8:44 AM CDT

I ADDED ALL NEW PHOTOS, BUT YOU MAY HAVE TO REFRESH YOUR BROWSER TO SEE THEM.

We were able to see Dr. Choi in clinic on Monday. She had spoken with Dr. Levine and there was a little discussion on having us stay a little longer. She checked Henry really well and questioned his appetite level, activity level, amount and sound of cough, and then decided that we could leave. I was so happy to get back to my home and hometown. I felt so lonely for 4 days in Ann Arbor.

Official Blood Count results"

WBC 3.5 normal is 4.5-13.5
PLATELETS 175000 normal is 150000-450000
Hemoglobin 12.6 normal is 12.5 to 16.0
Absolute Neutrophil Count 2100 normal is 1800-10001

Those numbers are great!

For our anniversary, Patrick and I had planned an overnight stay in Roanoke and we also wanted to take the children to the pumpkin patch in Riner. Also, I was asked to give a talk at church on Sunday since it is time to declare our annual stewardship commitments. There were a few other fun parties that we missed, too. It would have been great to catch up with some of you.

So far, Henry seems to feel stronger and have a better appetite. His coughing has slowed down to almost nothing, but when he does cough, it seems to be more productive than before the procedure. He is back to school today and Wendy has noticed that the cough is better. The treatment thus far is just an additional antibiotic. If the cultures of the chest tissue and drainage begin to grow anything, the BMT clinic will call us and let us know what to change. Otherwise, we return on November 6th. Henry will be able to get a flu shot during that visit!

We were able to leave U of M early than expected because the Pulmonary Lab was able to do the pulmonary function test earlier than scheduled. We didn't wait around for the results, but I am sure that I would have heard already, if there was something wrong. We drove all Monday evening, arriving home after midnight and sneaking into bed without anyone in the house knowing it until morning!

Thank you all for gathering around us during this time of uncertainty. The road to complete healing is going to be unpredictable, but what I do know for sure is that you will all be there along side us to help us stay on the right path.

Angela

Monday, October 22, 2007 3:30 PM CDT

I just spoke with Angela. They left Michigan about 3:00 pm today. The cultures from Henry's lungs have not yet "grown" any bacteria or fungus. The doctors will continue to let the cultures grow for 10 days. In the mean time, he will take two antibiotics in hopes that it clears up what might be causing the problem. We go back to Michigan in two weeks (Nov. 6th).

Pray for their safe drive home. They will split the drive between today and tomorrow. Keep believeing.

Sunday, October 21, 2007 7:46 PM CDT

Just a short update tonight to let you know that Henry came through his procedure with flying colors. He was out of the hospital early Friday afternoon. On Saturday, Angela, Faye (Granny Duck) and Henry went to Port Huron. They visited Faye's niece and watched boats in the harbor.

Angela went to church in Ann Arbor today. I know when you are worried, church always brings you comfort...even if it isn't your "regular" church. We will find out tomorrow (Monday) afternoon what, if anything, is growing in the biopsy culture. We did find out that Henry's bronchial tubes are smaller than normal. It seems this is something he was born with, and not a caused by his syndrome or transplant. Hopefully, they will get on the road home tomorrow afternoon, and be back home on Tuesday.

Sameul seems to have moved to Uncle John's and Auntie Beth's house. He begged today to spend one more night, so Harper and I are home alone again. Harper spent last night at Miss Karen's, so I am glad to have at least one of them home. We had gotten used to being all together again, so even this five-day period of being apart seems so long and so lonely.

Thanks for your prayers. Believe his tests results will be fine and that they will be home again Tuesday.

Friday, October 19, 2007 3:20 PM CDT

Greetings from Ann Arbor…

We had an uneventful drive yesterday and arrived here around 9:30pm. We were able to get a room at the usual place, despite the last minute plans and a home University of Michigan football game this weekend!

Henry had blood work this morning and an appointment in the BMT clinic. His counts were great-his platelets were up to 175,000! They are finally into the normal range and so they say, the last cell line that fully engrafts after transplant.

Deb, the nurse practitioner prepared me for the possibility that Henry could be admitted to the hospital following the procedure and that we needed to stay in Ann Arbor through the weekend. The BMT team wants him to stay and return on Monday to see if anything shows up on the tests of the lung fluid and tissue. I had packed for just 3 days, so as soon as I finish this posting, I am going to try to extend our hotel room through Monday, find the nearest Laundromat, and make a run to Meijer for some snacks/drinks.

The bronchoscopy was a short procedure. They found that Henry’s bronchial tubes are smaller in diameter than usual, that the lining in his lungs was red (rather than the usual pink), and that he had a moderate amount of mucous secretions-which they suctioned out. They took a biopsy of the tissue and will test the secretions and we should know something preliminary on Monday. The results could show a fungus, bacteria, graft versus host disease, or latent lung damage due to the chemotherapy. The size of the bronchial tubes will likely never change as I learned today that they don’t really increase in size after age 8. The pulmonologist did tell me that this should not be harmful to him, except maybe would extend the duration of the normal cold from 5 days to 7 or 8 days.

The weather has turned a little cool here and rain is in the forecast. We are going to relax here at the hotel (I hope), keep warm, and hopefully find ways to make 5 outfits out of our 3 day wardrobe!

Thanks to all of you for your prayers.

Angela

Wednesday, October 17, 2007 8:34 PM CDT

In the last few days, I have heard by phone, email, and in the guestbook from our very close 7 Mott family. We were so happy that Mashawn signed the guestbook today. Also, we have had numerous messages of comfort and support from many of you and we appreciate it so much. We are all very anxious (including Henry), but we know that Henry will be fine.

Apparently Dr. Levine had to flex his muscle a little to get this procedure to happen as quickly, as the surgery schedule is so crammed. Late today I received a call from one of the nurses to tell me that the bronchoscopy was scheduled at 11am on Friday. Well, some of you may remember that Friday is our 11 year wedding anniversary. What a way to spend it! Patrick will be here in Radford with Sam and Harper and I will be in Michigan with Henry.

We will leave tomorrow morning and drive all day to arrive in Ann Arbor just in time to get a “last supper” and a good night’s rest. I am sure that he will need to go to the bone marrow clinic at some point on Friday, but I do not have an appointment time yet. We plan to stay Friday night and drive all day on Saturday to return home sometime that evening/night. I will take a computer with me and update again on Friday after we get back to the hotel room.

Thank you for surrounding us with comfort and love at this time. Angela

P. S. We are planning to have Henry’s big celebration in the spring of 2008. We hope to schedule it just after school is out. We plan to invite Dr. Gehrz and Dr. Levine as well as the donor! Things are so unpredictable right now and the weather is changing, so we decided to delay it. I will try to get a date scheduled so that you can begin to make plans!

Tuesday, October 16, 2007 8:16 PM CDT

Henry continues with a cough. Deb, Dr. Levine’s nurse practitioner, called me yesterday to check on Henry. She was concerned that the cough was still present after three weeks. She spoke with Dr. Gehrz and Dr. Levine yesterday and today, and they (The Dream Team) feel that a bronchoscopy is needed to figure out what is going on down in his lungs. He had a CT scan yesterday which showed what appeared to be mucous plugs in two lobes on the right side and in one lobe on the left side. On the outside, he appears fine, but I can tell that he is a little tired.

A bronchoscopy is where a tube with a camera on the end is inserted into the lungs. A pulmonologist will look for any abnormal or inflamed tissue, and may need to take a biopsy of lung tissue. The lungs will be rinsed and the fluid that is suctioned out can be tested to determine what, if anything, is happening.

This is an outpatient procedure. It does require anesthesia and will be performed at the University of Michigan. I am waiting on the schedulers to call me with a time and we will be on the road to good ‘ole Ann Arbor.

I am sure that this may seem like a stumbling block to some of you. I am anxious, but I Believe that he will be fine. We have invested so much time and prayer into this child and I am committed to whatever it takes to get him through this year after transplant. It has only been five months, and he has had very minimal complications in comparison to what I was prepared for him to endure.

I will keep you all posted and update with the latest information. Angela

Also, several of you have asked about Mr. Wilson. His attacker has been identified and arrested. It is someone that is familiar to him and has a criminal record. Mr. Wilson is bedbound and unable to communicate which is really sad to me. I have been following his status through my father who visits with him as often as he is able.

Sunday, October 14, 2007 4:38 PM CDT

Thanks to Mr. and Mrs. Woody of Christiansburg for the trip to the NASCAR race last night. We were surprised by this kind gesture and gladly took them up on it when we learned that the seats were inside, with less crowds and little noise and warmth! While there, we were able to see Lisa (who introduced Henry to Carl Edwards and Greg Biffel in 2006) and another friend Jill. Thanks for the race gear, Jill!

Saturday started early with a trip to Dr. Gehrz to check on Henry’s lungs. He handed us a specimen cup and asked if Henry could cough up something so that it could be tested for any bacteria, viruses, or fungi. Well, after chest percussions, nebulizing and plain old “hocking”, he finally produced a very small specimen. During all of the effort, he looked up at me and said, “I could do this if I was smoking!”

We were back home by 10am and quickly packing so that we could stop by the hospital for a quick blood test before we left. We were able to see Debbie, my therapy supervisor, and some other familiar and smiling faces there. Henry impressed the lab staff with his bravery and the revelation that he will be Elvis for Halloween! He dropped a few funny jokes and coughed us all the way to Charlotte.

We are doing everything by the book. Nebulizers-which is where you inhale aerosolized medication-drinking lots of fluids, and using a meter to measure the air flow out of his lungs. Still, he has this terrible cough. He has taken a 10 day course of antibiotics, which did loosen the cough a little. I have to say that I am a little worried and can’t stop thinking about what MAY be going on. I wish I could stop. I have washed windows, cooked awesome meals and cleaned the entire garage- all to divert my worries.

We see Dr. Gehrz again on Tuesday and hopefully, he will be better by then. I added new photos on the main page and also if you click the link at the top of the page that says, “view photos”.

I will update again this week.

Angela

P. S. I just learned that another fellow 7 Mott-er has passed away. His story has been on the ESPN website for the last 2 days. I am going to include the links to the stories. Please take the time to read them. I promise, you will never attend another high school homecoming again, without thinking of our friend, Eli.

http://sports.espn.go.com/espn/news/story?id=3059155

http://sports.espn.go.com/ncaa/highschool/news/story?id=3063610

Friday, October 12, 2007 7:52 AM CDT

On October 16th, it will be 5 months after the second transplant. Wow!

Okay for the numbers from the visit last week and a more detailed update…

WBC 2.5 (normal is 4.5-13.5)
Hemoglobin 12.3 (normal is 12.5-16.0)
Platelets 134,000 (normal is 150,000-450,000)
Absolute Neutrophil Count 1400 (normal is 1800-10,000)

As you can see, his counts are just below the low end of normal. He is doing great. I think that I mentioned a liver count that was just above the high end of normal range during the transplant. It is now at 21, with normal being 7 to 35. During transplant, this number was actually 58! His liver seems to be calmed down, his kidneys are functioning great, and his levels of magnesium and potassium have all stayed in the normal ranges. The steroids were again decreased, with hopes of being completely weaned by the next visit. He cannot attend public school as long as he is on steroids.

He takes just 5 medications twice daily, which he does without any complaints. They are yucky, smelly, and all different colors, but he does it-FAST! He has not had a Neupogen shot in about 6 weeks. He will get to take the flu shot, he just has to wait another month. The immediate family and our sitter have all been told to get it now, which we will.

Our next visit is scheduled in just a few more weeks. The first date that they said was November 2nd and Henry squealed out, “I can’t come to Michigan on my brother’s (Sam) birthday!” So they quickly, changed it to a week earlier on October 26th. If anyone is interested in a road trip, let me know.

Sorry for the delay in the update. This week started out with a bang. I took Harper to Dr. Gehrz on Monday with vomiting and temp of 102 and my concern has increased over a cough that Henry has had for 2 weeks. Last week and this week, he has had a chest X ray –both are clear, but a breathing test that showed that he was not blowing out enough air. We are doing breathing treatments at home and keeping records for a return visit to Dr. Gehrz on Saturday.

I will keep you posted….

Angela

P. S. I am going to update the website photos this weekend.

Saturday, October 6, 2007 4:50 PM CDT

Clinic visit went well. We just arrived home around 2pm and it is now almost 6pm. I will update with details sometime in the next few days. As we drove out of Ann Arbor yesterday, Henry said "Good luck boys" when we passed The Big House. Michigan pulled off another win today-Go Big Blue!

Thanks to all of you for checking on us and caring. When we arrived home, we found a James Bond Goldfinger action figure on the front steps. Later we learned it was from Henrys cub scout pack leader, Mr. David Horton.

Just before we left for Michigan (and after we were mysteriosly "booed") we had a box at our back door that was opened, no card and no sign of its prior owner. In it were 5 shirts, one for each of our family members. The front says BELIEVER. The back has the verse from John 20:29 that I leaned on so much during the transplants... Jesus told them, "Blessed are those who have not seen and yet believe."

Back in May, I bought 5 T-shirts at the U of M that say Michigan Transplant. I had big plans for using them in the annual holiday photo. Well, the new shirts are now the choice!

Thanks to whoever left the box of shirts. How ironic that they came the day after Henry was almost smashed by a speeding truck on Roberston Street (by the school).

Henry has many angels watching over him. I wonder what God has in store for him? In Henry's words, "I guess we will have to see how it all plays out, Mom."

Love to all of you....Angela

Monday, October 1, 2007 2:40 PM CDT

Day 138 after the second transplant

I can hardly believe that number, but when I look at Henry, it is obvious that he is a survivor. He now has a head full of brown hair, but not enough to warrant a real haircut yet. Yes, I said brown. Those golden locks are long gone. He is not happy about that, but is very happy to have hair! His skin has a beautiful pink color, while most of his life he has had pale, almost transparent skin. He has so much energy, enough to play football in the backyard for hours (with the Wimbish boys) last Saturday evening.

In the past, when he suffered a scratch or some other sore on his skin, it took forever to heal and an unusual scar formed over the abrasion. Now, it miraculously heals almost overnight and looks just like you would expect. His skin does turn bright red if exposed to direct sun, but otherwise, there is no sign of the graft versus host disease. Maybe just a little dryness on his nose-and that’s it. Right now, he has a little cough, but he saw Dr. Gehrz this morning who said he was just fine.

He is however, a little immature when around his friends. Lots of horseplay and playing around…In fact, he has been a little too talkative in his art and religious education classes. I AM NOT making excuses, but he is so happy when allowed to be around children his age, and can’t help himself. (The apple doesn’t fall far from the tree!)

His blood counts continue to improve each time the dose of immunosuppressants decreases. His last counts were much better with the exception of the platelets, which are still good.

WBC 3.2
Hemoglobin 12.5
Platelets 115,000
Absolute Neutrophil Count 2144

We have an appointment in Michigan on Friday and will drive all day on Thursday so that we will be able to arrive at our 7:30am appointment! We have been making the 10 hour drive every 2-3 weeks and we hope that they will soon change to monthly intervals. We still have not heard from the donor. I must admit, that I think of him daily and wonder what his life is like. Some donors choose to remain anonymous and maybe that is his case. If so, we will accept his decision as we already know that he is a wonderful man.

Our household dynamics continue to improve. The boys are adjusting better than the parents! I continue to wish that there was more time in each day. I wonder how I ever worked, and wonder how I will ever be able to go back. Henry, Harper and I stopped by Pulaski Hospital today for a very quick visit. It was great to be there. I promise to come back for future visits, so that we can try to see everybody. Henry continues to have homebound school with Ms. Wendy, who he adores, but he can’t wait to get to the classroom!

Little Maddie is still in the hospital, but is scheduled to go home tomorrow. Check her site (links are below) for details. Abigail Morgan’s mom had a beautiful baby girl, named Raelyn –Rae was Abbie’s middle name…I am in tears now. Gavin’s mom has posted new photos on his site –see the links below.
Justin, Henry’s transplant buddy, is out of the hospital and has claimed his first deer this year-Henry is jealous! Unfortunately, Natalie Salazar and Louise Reeves passed away last week-after their transplants. When my “hair girls” visited, they gave Natalie’s mom a makeover and polished Natalie’s nails.

Each day, I try to reflect on our transplant experience. It grounds me and reminds me to be thankful. When Henry was on 7 Mott, I would not allow myself to experience fear and doubt. I had to suppress those thoughts, even though they did sneak in at times. It becomes more obvious to me that Henry was fortunate when I learn of those who have died. Without your prayers and the grace of God, he would not be here. I cannot imagine life without him.

Thursday, September 20, 2007 7:04 AM CDT

I apologize for the delay in updating the website. The days get busier, but also more rewarding. Guitar practice, tennis lessons, art classes, piano practice, homework, medical appointments, and just plain old parenting each keep us hopping.

Henry’s official blood count is:

WBC 2.5 normal is 4.5-13.5
Hemoglobin 12.6 normal is 12.5-16.0
Platelets 145000 normal is 150000-450000
Absolute Neutrophil Count 1100 normal is 1800-10100

The platelets and hemoglobin have increased. The total white count is still decreased and therefore the neutrophils are still decreased. This is to be expected from the continued doses of steroids and 2 other immunosuppressants. Henry has to take the immunosuppressants to keep the donor’s marrow from engrafting too quickly. If it did, he could be at high risk for graft versus host disease. The double-edged sword is that Henry continues at risk for getting infections while he is on the immunosuppressants. This is the reason that Henry is still not able to attend school, yet.

Dr. Levine has a grand plan to slowly wean Henry from these medications in hopes to prevent chronic graft versus host disease. Chronic GVHD can include severe dryness of the mouth, eyes, and nose, skin rash, severe abdominal pain and diarrhea, poor liver and/or lung function, and limitations in joint movement. Patrick and I really never considered these things prior to the transplant. We were always afraid of infections or the side effects of the chemotherapy and just didn’t invest much fear in the GVHD. Luckily, this is the expertise of the U of M transplant team and we are thrilled with their plan.

I am surprised when our family continues to be blessed with gifts from you. Be it a special meal, a hug of support, or an envelope of money, we feel so blessed to be the recipients of your good deeds.

I must confess that I run to the mailbox each day, hoping for some communication from the donor. No luck yet. I am not sure that Henry is as anxious to hear from him as we, but he does talk about it often. The donor is not obligated to reply to us or to meet us. I hope that our letters urged him to decide to experience meeting Henry. I am not sure exactly how a family goes about “thanking” a donor for their special gift. I do think that simply meeting Henry and seeing our happy family together would validate our gratitude and confirm his arduous decision to donate.

Please say prayers for our little friend Madeline Thelen. She will have surgery tomorrow to have a tube placed in her belly to receive medications and liquid food. She is special to us and we pray for a quick and speedy recovery.

Angela

P. S. I added photos on "view photos" section as well as on the Flickr link below. Hope you enjoy!

Sunday, September 16, 2007 10:10 PM CDT

We arrived in Michigan yesterday just in time for the University of Michigan vs. Notre Dame football game. HAIL TO THE VICTORS! Coach Carr and the rest of “Henry’s Team” played incredibly well. We were in the fourth row on the forty yard line, right behind the team. Russell Crowe was standing right in front of us. He and Coach Carr are friends, and he came to give the Wolverines the “Gladiator” talk about finding strength when the going gets tough. I think Henry knows that by heart!

Henry brought B Davis along for the trip, and the two of them are having so much fun. I haven’t heard Henry laugh this much since before his transplant. They memorized scenes from the movie “Norbit” and cracked us up all day. We were stunned to find out that Henry and B, who are in an adjoining room to ours, had ordered four “pay per view” movies and one video game! They only watched a couple minutes of each movie, but I was relieved to learn that none were “grown up” movies, and the desk clerk was kind enough to erase the charges and block the “order button” in their room. According to Henry, they were just “accidents” and he didn’t even know how to order movies. With four movies in less than 30 minutes, I would say he is pretty good at it!

As you know, Henry is a very picky eater…although he has been willing to eat a bigger variety (i.e. more than chicken nuggets and fries) since his transplant. Last night at dinner, we played “Food Fear Factor”. I offered a dollar for them to try new foods like fried green beans, fried mac and cheese and onions. They made awful faces and gagging sounds, but they each made seven or eight bucks! Henry and B spent time with Erin, who works on 7 Mott and helped take care of Henry when he was there. She took them to play laser tag and “glow in the dark golf” today. Tomorrow morning, Henry begins his appointments at University of Michigan Children’s Hospital. We will have to get on the road and drive all day in order to get home before midnight. It is a long drive, but we are happy to do it.

Please keep a young boy named Eli and his family in your prayers. He was on the transplant floor when Henry was there. We read tonight that he has been given only a couple of weeks. He is a sweet child, but seems to accept this news. With each child that passes, we realize how fortunate we are, but also have some guilt and wonder why, them, and not us.

We will update in a few days after Henry’s appointment and test results are back. We expect all good news, but it will be nice to have our hopes confirmed. Until then, keep believing that miracles do happen and prayers can be answered.

Tuesday, September 11, 2007 8:27 AM CDT

Day 118 after the second transplant

ALL NEW PHOTOS ADDED ON VIEW PHOTOS PAGE!!

I have this sweet silence in my home right now, so I thought I could concentrate on a journal update for you. Harper is at pre-school, Samuel is at school, and Henry is dressed and upstairs following his Dad's every step, anxiously awaiting their departure to Patrick K. Moore, P. C. and Assistant Henry Moore. Educators, never fear, he has completed 60 math flashcards, 30 minutes of reading, and has packed his spelling words and a book on the Great Wall of China to take with him to the office. Never on a normal day, would he be so willing to do all of that school work!

Harper continues to adjust to preschool and is no longer crying when we leave him in the classroom. When he is able, Henry makes the trip with Harper to help the transition. This has really been helpful for Harper and profitable for Henry! Harper started his first music class with Miss Alice yesterday and we really enjoyed it.

Samuel continues to love Mrs. Ellerman and kindergarten. His artistic abilities continue to amaze us, so much that we are compiling a scrapbook of his "doodling" work at home. He is proud to show it off, so if you visit, please don't hesitate to ask to see it. Samuel is taking art lessons from Ms. Kris Graham and is taking piano from Miss Alice.

On to Henry, this is his page right? Henry is doing well with homebound with Ms. Wendy. This homebound instruction is provided by our local public school. He is a little fidgety with the steroids and typical boy behavior, but overall, he is tolerating 3 straight hours very well. He has made a few quick visits to his classroom and that has been helpful for his desire to socialize. He is down to 54 pounds and his other front tooth has finally erupted through the gum. Before long, both front teeth will be visible, at least by our family Christmas photo :)

Henry's blood counts are low, but stable. His white count has been 2.1 and his neutrophil count is only 1000. His platelets, however, are staying up around the 110,000 mark. His hemoglobin is also good. So, far, he has not needed another Neupogen shot. We are getting his counts monitored frequently with Dr. Gehrz who then communicates with U of M.
Several folks have asked when Henry will be able to attend school at McHarg. I am not sure of that answer. Right now, he has no immunity against viruses, like the chicken pox, CMV, and other viruses that live on surfaces that many little children touch. ( i.e. bathroom surfaces , cafeteria railings , and doorknobs anywhere ) so that is the main reason that he cannot attend. Also, he has to repeat his complete immunization schedule and I am not sure if that needs to be finished by the time he starts school. He has had several play dates outside in the shade and that has worked well. Exercise is really good for him. In fact, I haven't seen him fatigued in a while. His stamina seems to be better than pre transplant levels. His first art class is tonight and will begin tennis with Ashton Downs on Thursday night. He started guitar lessons last week. We are practicing at home each day and he seems to really like it. Maybe at Christmas, we can tape a performance of Henry with Samuel on YouTube and post it on the website!

I saw an ad in the paper last week about platelet donations at Kent Square in Blacksburg. They can accommodate 2 persons at a time on Mondays, Tuesdays, Thursdays and Fridays from 730am to 3pm. It takes about 2 hours total, with one hour of actually being on the donation table. The platelets would benefit healthcare centers in the entire NRV and Roanoke. If you and a friend would like to go, please call 1-866-353-1030. I would like to get someone to go with me one day next week. Please let me know if you are interested. I had talked to Paula Downs about this last week, and I read Madeline Thelen's journal today and her Mom just encouraged me to move forward with my plan.

Thanks to all of you for your smiles and comforting words in passing us throughout our day. I sometimes am speechless, in fear that I may break down and cry. My silence or lack of the words that you might want to hear, do no indicate my lack of gratitude. I thank God every day for each one of you.

P. S. We sent the donor our letters, but have not yet heard back from him. We are anxiously awaiting, but he is not required to reply to us.

Believing ~ Angela

Thursday, September 6, 2007 12:25 AM CDT

Another week has passed with Henry and Angela at home! Things are slowly getting back to "normal" and it feels great. The three boys are back to fussing with each other one moment, and best friends the next. Wendy Phillips is doing a fantastic job tutoring Henry at home. We are amazed with his progress. He spends each evening telling us about his "school" and reads a short story to Samuel and Harper. Samuel started Kindergarten and, of course, he loves Mrs. Ellerman. She is dear to our family, and Henry tells Sam about his experience in Mrs. Ellerman's class. Finally, Harper started school this week! He has one of Samuel's favorite teachers, Miss Bethany. First Christian Preschool is terrific, and my niece and all of my nephews have attended this same school. Harper was excited about going to school, but had second thoughts when he arrived. Angela and I left Harper at school with Miss Bethany holding him while he cried. When Angela picked him up, Harper said, "I cried, and I cried and I cried. And then I told her NO!" This morning we were getting ready for school and Harper said, "Miss Bethany doesn't have to go to school today." Hopefully, the day got better.

After Henry's homebound school, he has come to work in my office for the last two days. He makes copies and empties trash cans, etc. He asked me, "Who pays around here?" When I told him I did he said, "Oh." I was in an appointment when Henry was leaving work and a staff member asked me to step out of the conference room. He said Henry wouldn't leave until he was paid! The next day, he had my assistant, Kathy, make a sign that read "Patrick K. Moore, Attorney at Law / P. Henry Moore, Assistant". It is hanging on my door.

We are leaving next Friday to go back to Michigan for a check up. B Davis is going with us and we are going to watch the Michigan-Notre Dame football game. We hope Coach Carr and the gang have a better day next Saturday. Hope everyone is well. I think Maddie's appointment went well yesterday. Say a prayer for Louise. Thanks for Believing Henry would be CURED!

Thursday, August 30, 2007 10:12 AM CDT

Henry's visit is complete. His counts were good again. I did not get a copy of them because all of the results were not back yet. What I do remember is that the platelets were 101,000 and the white count was 3.something.

We saw Dr. Levine in clinic and he is going to try to see Henry each time we return. We will return on September 17th and then our visits will be monthly. We hope to catch a Michigan football game the next time we have a visit.

As we hoped, the steroids were tapered and he is now off of all pain medication. The reductions are just one step closer to him getting to go to public school. The steroids suppress the immune system, which makes him more susceptible to germs, but they also allow the new bone marrow to engraft slowly, which prevents graft versus host disease. Speaking of that, Henry has had no symptoms since his hospital stay in early August.

We saw Maddie and hope to have lunch with her and Renee, her mother. Erin, the tech from 7 Mott, is here with Henry now. They have become great friends and she is a reminder that the staff on 7 Mott is truly our family. I plan to stop in Toledo to visit with Julie Morgan, and will be sure to tell her how much you all ask about them.

I will update again either tomorrow or through the weekend.
Have a great Labor Day weekend with your family.
Angela

Tuesday, August 28, 2007 7:30 PM CDT

I tried to add new photos tonight with no luck. They are in .bmp format and they need to be in .jpg. I could try to figure out how to convert them, but have lots to do here to get ready for the trip tomorrow.

Henry and I will stop in to see Dr. Gehrz early tomorrow morning and then continue on to Ann Arbor. It is a 10 hour drive which sounds bad, but not to me! I have enjoyed being with my family for the last 2 1/2 weeks. We have finally convinced Harper to sleep with Henry in his basement bedroom and Samuel is enjoying sleeping alone-except that Henry's cat has decided to sleep with Sam. Patrick and I have enjoyed multiple nights of uninterrupted sleep which has been great for our minds!

Samuel is adjusting to school and Henry is doing great with homebound with Ms. Wendy. We actually had a quick 5 minute visit to Henry's classroom on Monday. We discovered that 3 of his classmates are children of my Pulaski co-workers...Emily Ward-Mike Ward's daughter, Mary Katherine Brown-Jackie Brown's daughter(Jackie is Dr. Knarr's nurse), and Darren in dietary's daughter and I am sorry Darren, I forgot her name. How neat that they will all be in class together! Harper went to preschool orientation today and told his teacher, "Shh, be quiet" when she tried to talk to him while he was talking on the toy phone in her classroom!!! It was so funny!

Henry has been doing great and we are hoping for good blood counts and a reduction in steroids during our visit. We will be lucky to see Madeline Thelen and her Mom, Renee on Thursday and I promise to get updated photos to post on the website. I also plan to stop to see Julie Morgan, Abigail's mother, who I have not seen in months.

I will update the website by Friday as we will begin our return home right after the visit on Thursday. We will break the return trip up into two days.

Thank you all for following us, even after the scary times are over.
Angela

Monday, August 27, 2007 6:34 AM CDT

Henry was featured on WDBJ7 News on Friday. In case you missed it, here is the web address.

http://www.wdbj7.com/Global/story.asp?s=6980194

Copy and paste this into your browser box and hit go. When you get to the page, click on the video camera and wait for the video to load. You will see a commercial first.

I will update tomorrow sometime with new photos and a short message before we leave for our short trip to Michigan.

Angela

Sunday, August 26, 2007 11:23 PM CDT

It is almost 12:30 am, and this house is quiet. I can't sleep, so I decided to check on some of the kids we met in Michigan, and some others from other places we have been. I know this much to be true: Henry and his family are very lucky that he has been spared, and that he is happy, healed and HOME! In reality, his odds were not so great. Looking back at the failed first transplant, the 106.9 degree fevers. the constant rash, diareah, vomiting.....I don't know how we made it. The bigger question is WHY we made it. Each morning, as soon as I wake, I remember to thank God for bringing Angela and Henry Home...Alive and Cured. I then ask God to keep a little girl in Russia, who our friends hope to adopt, safe and available for the Buck family. Then I think about Gavin and Abbie. As happy as I am for Henry, it hurst almost equally as bad to think about the ones who didn't make it. Gavin is on my heart every day. I wonder how God could let one-year old Abigail pass. I tell myself that I must accept God's plan, no matter what. It is still hard. Henry has complete faith that Gavin and Abbie are in Heaven and that they are still his friends and that they will play together one day in heaven. Henry doesn't worried about where they are. He alread KNOWS. Henery continues to do what he has always done. Be strong; Be brave; Be faithful; Be an example of what we can do if we BELIEVED as he does.

Enough about what I think about when I cannot sleep.

All three boys had a great time Saturday at the lake with Aunti Beth, Uncle John, Cousin John, III and Ben. They were there for most of the day swimming, riding the boat, paddleboat, Sunfish, Jet Ski and an inflatable "Cozy Coup" that Beth bought Harper.

Speaking of Harper, he somehow wound up in bed with Gran when she was here for three weeks, and then stayed there when I returned home. He has refused his own room, but has started sleeping in Henry's new room since Friday. I promised Henry a "real" StarWars light saber (as real as you get for $99.00 at Spencers)...and Voila! This is the third night in a row Harper slept in Henry's room! Just four more nights and the light saber is his! (I buckled after the first night and bought it Saturday)--but it can "go away" if Harper stops sleeping with him. I actually think Henry loves the company in his new room. It is very sweet to peek at them while sleeping.

I'm finally getting tired. If you missed Henry on the news on Friday night, Jean Jahhon did a very nice story about Henry's homecoming. Jean has always been there for us when we needed to advertise a bone marrow drive, or just when we really needed extra prayers. Thanks to her and WDBJ7! You can watch it at www.wjbj7.com. Good Night.

Tuesday, August 21, 2007 12:49 AM CDT

Day 97 after the second transplant-just 3 days away from that magical 100 day mark…

It is great to be at home, but we are all trying to adjust to our “living together” again. In the midst of the reunion, each of us has had a stomach virus, even Henry had it-but is fine. I think that he and I brought it from the hospital (U of M) back to Virginia because we both had nausea and vomiting on our ride home. The boys have been playing a lot, but our time outside has to be limited because the bright sun can be harmful for Henry’s skin GVHD. They are mostly playing in the evenings and I sit in awe of Henry’s strength while I watch them play. He seems even stronger than he was before the transplant(s)! We have been welcomed home with wonderful hugs and smiles from everyone that we see and it feels great. I love seeing the believe magnets on the cars around town and we still have a few if you are interested. Stephanie Harvey cooked a “welcome home” meal for us and as you can imagine, it was delicious.

School begins tomorrow for both Henry and Samuel. Samuel has Mrs. Ellerman, Anna Kate’s mother. She was also Henry’s kindergarten teacher. Henry has Mrs. Mary Woods who will be working closely with his homebound teacher, Mrs. Wendy Phillips. We are thrilled with their teachers and know that both are going to have a wonderful school year. Harper begins preschool at First Christian the day after Labor Day and will attend for 3 hours on Tuesday and Thursday mornings. He will have Miss Bethany Graham who was also Samuel’s teacher. I cannot believe that Harper is old enough to attend pre-school!

I have not decided yet about when I will return to work. I truly love my job and I enjoy watching my patients get better. I love my co-workers at Pulaski, but I can’t bear to think of going into a hospital right now. I will go back when the time is right. I miss my rehab co-workers and the rest of the Pulaski gang so much. I want Ansie and Peyton, especially, to know how much I appreciate their (almost daily) entries into the guestbook.

Henry is now free of all of his lines. Dr. Goldstein removed his PICC line on Saturday. It was draining quite a bit around the exit site, so it needed to come out as soon as the antibiotics were finished. I would have loved to have kept it longer in case of another infection, but my “motherly instinct” was not giving me good vibes about the drainage.

Dr. Gehrz saw Henry on Monday and will be seeing him every week to keep close tabs on him. Dr. Gehrz is like family so we don’t mind getting to visit with him each week.
Henry had blood work today and the official results are:

WBC 2.0 normal is 4.5-13.5
Hemoglobin 11.5 normal is 12.5-16.0
Platelets 122,000 normal is 150000-450000
Absolute Neutrophil Count 880 normal is 1800 to 10000

The counts aren’t so bad, but he does need a Neupogen shot tonight to boost those neutrophils a little. He will also need daily blood counts to ensure that the neutrophil count is increasing. If it gets below 500, the bacteria in his own body become his worst and potentially deadly enemy. The platelets are increasing which is a really good sign. I have also forgotten to tell you that Henry has had a VNTR blood test at 30 days, 60 days, and around 75 days after transplant that showed 100onor cells each time. There is no doubt that his current marrow is his amazing donor’s marrow, it is just fragile. We will go for another appointment in Michigan on August 30th, and I will update again after that.

I hope that you all understand that I am a little delayed on the thank you notes. We genuinely appreciate all of your kind gestures toward our family and know that we could not have endured what we did without each of you. I am struggling with trying to figure out what is “normal” for our family and hoping that I am paying enough attention to each of the boys, and especially to myself. I find myself letting my mind travel in many directions at the same time and then redirecting and refocusing and repeating the “truths” to myself.

We are very lucky to be here at home together and for that I am very thankful.

With deep gratitude to each of you for your friendship and kindness, Angela

Thursday, August 16, 2007 9:03 AM CDT

Day 92 after the second transplant.

We arrived home around 1:30 yesterday, before the 100 day mark after transplant. The reunion was wonderful. Beth, Johnny, and Ben were here to capture it on camera and with video. The boys have played great together and Harper is my new appendage.

During my drive home, I found myself trying to re-capture memories during the transplant/hospital stay. I retrieved several things that I had already forgotten. I will try to get them in the journal to share with you guys and also, ensure that they are not lost forever. I am going to try to take a break from the journal entries, at least until the boys start to school on the 23rd. I hope that you all understand that I want to spend lots of time with them.

Thousands of prayers, hundreds of cards, and many donations and gifts later, we are home. We know that your support sustained us and that God allowed Henry to live. I am still having trouble with the fact that some of our friends did not make it and I hope that I will some day understand. I know that I should not question Him, but it is only natural.

Many of you have asked about our good friend, Mr. Wilson. If you look closely at the reward poster on the photo that I added, Henry is standing beside him. Henry now knows about the injury, but does not know the extent of them. Mr. Wilson is on a ventilator, has had brain surgery to cut a flap in the skull to allow the brain room to swell, and is in a coma. We are so sad about this, and hope that you will pray for his wonderful family. I am going to attach a link to the most recent article about him. The poster says that they have $32,000, but they now have raised $50,000.

http://www.al.com/news/press-register/index.ssf?/base/news/1187255839161800.xml&coll=3

Henry has another appointment in Michigan on August 30th. The IV antibiotics should be finished on Friday night. He is happy to be home and doing great. I will update again next week.
Love to all of you, Angela

Tuesday, August 14, 2007 10:31 AM CDT

FANTASTIC NEWS! Henry and Angela will be coming home Thursday or Friday. They will leave Ann Arbor tomorrow, and it will take a day or two to get back. Henry saw Dr. Levine this morning in clinic. His platelets are almost 100,000, which means he not only held on to the bag they gave him, but is making some on his own. His white count is good, and his hemoglobin is up. His ANC is 1500, which is way down from his high of 5800, but it is up from last week.

Angela is still giving Henry IV antibiotics twice a day through his "PICC" line, and he will continue to receive them through the end of this week. It is only because of Dr. Levine's trust in Henry's pediatricians, Dr. Gehrz and Dr. Samples, here in Dublin, that Henry is able to leave Michigan. One of the Doctors will remove the PICC line this weekend in their office. We have to return to Michigan on August 30th with Henry for a check up. This may continue every few weeks for some time. -Not that we are complaining! We will do it-and be thankful that we can.

While at clinic today, Angela gave Dr. Levine a check for $500.00 from the sale of all of the "BELIEVE" magnents. As far as we know, they are all sold. If anyone has any left, let me know. I have people who still want one. That money will be used by the Children's Hospital to buy something nice for the kids play room or used in some way to make the kids on the BMT unit a little happier. Thanks to all who helped sell them, and to everyone who bought one. I see them all over town!

Angela is busy packing today. There is a lot to pack up. She will have to ship much of it by UPS. Again, who cares? We are just excited they are coming home. I know Angela and Henry will need a few days rest when they get here, just to recover from all of the work getting ready to come home. We received the news today that Henry will for certain not be able to start public school for a while. We know Mr. Graham, his principal, and Mrs. Wendy Phillips, his home bound teacher, will help keep him up to speed with the rest of the class. Samue starts kindergarten this year and Harper starts preschool. It will be hard for Henry to stay home.

Speaking of home, Larry Sams, with Sam's Brothers Construction, has just finished the remodel on Henry's room. Larry's team did a fantastic job! Henry and Angela won't recognize it when they see it. It is beautiful. Larry did everything at cost (or less) and we cannot thank him enough. New River Heating and Air will finish the duct cleaning and hook up of Henry's new high-tech air quality system. They are fantastic, too, and a HUGE thanks to Tommy Hannifan and the gang from NRH&Air!

Please get your thinking caps on. We want to have a big party in the park for the entire community who has helped us on this journey. Henry's (and our) success, health and faith has been helped tremendously by all of you. I want it to be a BIG celebration...with hotdogs, drinks, cotton candy and fun activities for everyone, as well as giving thanks to God and the people who have prayed for us. Give me your ideas, and let me know if you want to help organize and plan.

Thanks for BELIEVING! Our wishes and prayers have been answered!

Tuesday, August 14, 2007 10:31 AM CDT

Saturday, August 11, 2007 12:20 AM CDT

NEW PHOTOS ADDED ON THE FLICKR SITE. SCROLL DOWN AFTER THE JOURNAL ENTRY AND CLICK ON THE LINK. YOU MAY CLICK ON ANY OF THE FLIKR PHOTOS TO ENLARGE THEM, IF YOU WISH.

RECENT INFORMATION ABOUT Henry's friend, MR. WILSON....

http://wkrg.com/news/article/spanish_fort_rallies_for_fallen_businessman/4350/

http://blog.al.com/live/2007/08/funded_started_for_assault_vic.html

http://www.al.com/news/press-register/index.ssf?/base/news/1186911200276330.xml&coll=3

GOOD NEWS! Henry and Angela left the hospital yesterday afternoon. Their first stop was OutBack Steakhouse, where Henry ate a steak! He wouldn't even eat McDonalds fries earlier in the week, so this was huge. He is in for a shock when he comes back to Radford and realizes that you only get steak and crab legs for special treats. We are thankful that he is eating again.

Angela says that he is doing well, and that his counts are slowing -but surely coming up. As always, we are thankful for each day. Henry will continue his major "100 day" tests this week, and will hopefully be coming home to Radford sometime next week. We are starting the sixth month away from home. Sometimes it doesn't seem like it could have been that long, and other times it feels like it has been forever. Angela is thinking about taking a trip to see Mashawn, Gavin's mother, and visiting Gavin's resting place. When Henry entered the hospital last Monday, they missed Gavin's service and I think they still have a need for some sort of closure. We think of Gavin and Abbie constantly, and ask that you please keep their families in your prayers.

Fr. Kris and Grace Episcopal Church (which is next to our home) sent Mashawn a contribution in Henry's honor this week. What a wonderful tribute and a wonderful congregation. Fr. Kris is moving to Northern Virginia later this month, and it will be a huge loss for our community. On the other hand, it will be an equally huge blessing for some community in Northern Virginia. We will never, ever forget his visit to Michigan with Fr. Patrick and Anna Kate. Those three prayed so hard for Henry's second transplant to work..and it DID!

I received a very special and very generous check from my Kappa Alpha fraternity brothers this week. My "little brother" in KA, Randy Wimbish, organized a campaign with my friends, many of whom I have not seen in years, and they sent us a check to pay for a month's rent for Henry's apartment. With all of the bills and the cost of remodeling Henry's room and air quality devices, this could not have come at a better time. The thought and caring that comes with this gift means even more than the money. Thank you guys! I am very proud to be a KA and have brothers like you.

Another special prayer request for one of Poppy and Henry's good buddies. Mr. Wilson, who owns a service station near Mimi and Poppy's house in Alabama, was attacked and brutally beaten this morning as he was opening his station about 4:00 am. I don't know much yet, but do know he suffered severe head injuries. Mr. Wilson is a wonderful, sometimes grumpy man with a heart of gold. Henry loves to go to "Wilsons" and Mr. Wilson and a group of their friends held a fund-raiser barbeque earlier this summer and raised a lot of money that has helped pay for plane tickets and doctor bills. Please keep Mr. Wilson and his lovely wife in your prayers.
CLICK THE LINK BELOW FOR THE NEWS STORY AND VIDEO ABOUT MR. WILSON. HENRY DOES NOT YET KNOW ABOUT THIS.

Finally, please know that we appreciate everyone and everything for all you have done and continue to do. I have fallen behind on thank you notes, but don't think that we don't truly appreciate the meals, gifts, letters and calls. BELIEVE that Angela and Henry will be home this week, and that God will comfort and heal Mr. Wilson.

Saturday, August 11, 2007 12:20 AM CDT

GOOD NEWS! Henry and Angela left the hospital yesterday afternoon. Their first stop was OutBack Steakhouse, where Henry ate a steak! He wouldn't even eat McDonalds fries earlier in the week, so this was huge. He is in for a shock when he comes back to Radford and realizes that you only get steak and crab legs for special treats. We are thankful that he is eating again.

Angela says that he is doing well, and that his counts are slowing -but surely coming up. As always, we are thankful for each day. Henry will continue his major "100 day" tests this week, and will hopefully be coming home to Radford sometime next week. We are starting the sixth month away from home. Sometimes it doesn't seem like it could have been that long, and other times it feels like it has been forever. Angela is thinking about taking a trip to see Mashawn, Gavin's mother, and visiting Gavin's resting place. When Henry entered the hospital last Monday, they missed Gavin's service and I think they still have a need for some sort of closure. We think of Gavin and Abbie constantly, and ask that you please keep their families in your prayers.

Fr. Kris and Grace Episcopal Church (which is next to our home) sent Mashawn a contribution in Henry's honor this week. What a wonderful tribute and a wonderful congregation. Fr. Kris is moving to Northern Virginia later this month, and it will be a huge loss for our community. On the other hand, it will be an equally huge blessing for some community in Northern Virginia. We will never, ever forget his visit to Michigan with Fr. Patrick and Anna Kate. Those three prayed so hard for Henry's second transplant to work..and it DID!

I received a very special and very generous check from my Kappa Alpha fraternity brothers this week. My "little brother" in KA, Randy Wimbish, organized a campaign with my friends, many of whom I have not seen in years, and they sent us a check to pay for a month's rent for Henry's apartment. With all of the bills and the cost of remodeling Henry's room and air quality devices, this could not have come at a better time. The thought and caring that comes with this gift means even more than the money. Thank you guys! I am very proud to be a KA and have brothers like you.

Another special prayer request for one of Poppy and Henry's good buddies. Mr. Wilson, who owns a service station near Mimi and Poppy's house in Alabama, was attacked and brutally beaten this morning as he was opening his station about 4:00 am. I don't know much yet, but do know he suffered severe head injuries. Mr. Wilson is a wonderful, sometimes grumpy man with a heart of gold. Henry loves to go to "Wilsons" and Mr. Wilson and a group of their friends held a fund-raiser barbeque earlier this summer and raised a lot of money that has helped pay for plane tickets and doctor bills. Please keep Mr. Wilson and his lovely wife in your prayers.

Finally, please know that we appreciate everyone and everything for all you have done and continue to do. I have fallen behind on thank you notes, but don't think that we don't truly appreciate the meals, gifts, letters and calls. BELIEVE that Angela and Henry will be home this week, and that God will comfort and heal Mr. Wilson.

Thursday, August 9, 2007 10:07 PM CDT

Henry’s counts are better…

WBC 3.2
HGB I can’t remember the actual number but it was up from yesterday
Platelets stayed the same
ANC-they did not check that today

Henry has completed his pulmonary function test, his kidney function test and will have sedation tomorrow at 730am to get his PICC (peripherally inserted central catheter) inserted. That will allow his antibiotics to go directly into the heart just like the surgically inserted lines. He has been having a really hard time tolerating the strong IV antibiotics through the veins in his hands and arms and actually can’t wait to get the new line. This line will be in for as long as we need it for the IV antibiotics and then will be pulled out by a nurse at the clinic. The nurse that is going to insert it told me that she was going to try to insert it above the elbow so that he would be able to bend it to ride his bike and have no trouble shooting hoops.

Henry has had multiple blood draws since his other lines were removed and has been a trooper. He actually told me a couple of weeks ago that he would rather be stuck in the arm for his blood rather than dealing with those central lines. The lab staff thinks that he is funny because he tells them where to poke him, that he prefers the “butterfly” needle, and what color tubes they will need to collect the blood. I will be surprised if he doesn’t end up in the medical field after all of this intervention. “Nurse Maddie” gave him his oral meds tonight and it was a hoot to watch. I did get photos and video and will try to load it this weekend when we are home and I have more time. She actually has a sign on her door that you can come in her room and get you vitals checked for free! I remember a time when Henry did that. I am sure Dr. Gehrz will remember this one…. Dr. Matt and Tara Skewes gave Henry a medical kit as a gift while he was hospitalized at Carilion. When Dr. Gehrz finished his exam one morning he said, “Okay Henry, time for you to check me out.” Henry reached in the bag and grabbed the thermometer, held it up, and looked at Dr. Gehrz and said, “Bend over.” I thought I would die! I wanted to crawl under the bed. Needless, to say, he was born with his sense of humor and I am not sure where he got it. I think he actually got a double dose.

His appetite is still not where it has been. All of his bodily functions are working as they are supposed to and his blood pressure is back to normal with just one blood pressure pill, now. His weight is maintaining and his temperature has been normal. For all of that, I am thankful.

The plan is to get the PICC line early in the morning and I will get trained sometime tomorrow on how to infuse it. We have a clinic appointment on Tuesday and hopefully can get the vision, hearing, and heart tests on Monday. We will have a better idea on Tuesday about our return to Radford and I will keep you posted. We will see Dr. Levine in clinic and I am happy about that.

Okay, for another Michigan lesson…..If you check your maps, it is shaped like a mitten. As Laurie Buchwald mentioned in the guestbook, when you ask folks here where they live, they tell you by pointing to an area on their hand. I must have looked perplexed the first time someone did that to me. I can’t remember who it was actually, but they quickly took me to the map of Michigan in the nourishment room and showed me the mitten shape and explained it to me. Hope you are enjoying learning these interesting facts, I really have enjoyed this area and look forward to returning here for follow up visits.

So, Samuel made it home last night. Harper was in bed by the time he arrived, but woke up in the middle of the night and sat up in the bed and said “Sam’s home!” Patrick said that he went right into Sam’s room this morning and kissed and hugged Samuel. He said that Harper turned to him and said, “Where’s Henry, Where’s Mom?” At least he knew that we were all together. I know that we will be home soon and hate to whine because after all, we have survived this journey and that is a true miracle.

Believing, Angela

Wednesday, August 8, 2007 7:14 PM CDT

I'll start with the counts first...

WBC 2.9 up from yesterday
Hemoglobin 9.5 down from yesterday
Absolute Neutrophil Count 2000 up from 900 yesterday
Platelets 83000 but that is because he received a transfusion before the surgery to make sure that he had enough

The events of today really started last night after midnight. Henry was informed that he was not able to eat or drink anything after midnight due to his scheduled surgery. He became upset and eventually anxious. I finally called Kishta in around 2am to see if there was anything that he could get to help him settle down. He was asleep by 3am and I was awake until 4am, I know. At 8am, we were awakened by the staff to tell us that surgery would be here to get us soon. I quickly changed and brushed my hair and teeth, and never got around to the coffee. The surgery was quick and both of the lines were removed without any difficulties. They were even able to get the “cuff” on both lines which is like a buttress that keeps the line from pulling through the skin. I was glad of that, because he still has the cuff in his chest from the central line that he had when he was a baby. If these two had stayed in, we could let Harper learn dot-to-dot on Henry’s chest! We slept until 1pm today, then I went home for a short nap only to be awakened by the lawn company, who just happened to be mowing the lawn at that same time! He has been active this afternoon with Erin while I went back to the apartment. For dinner, he ate 3 chicken nuggets but no fries from McDonald’s. If he doesn’t eat that, something is not right! His most recent temperature was 99F and I hope that we do not end up fighting that all night. Kishta and Erin are here along with the wonderful staff here, so we are in good hands.

We were lucky today to get an early surgery time and extra lucky that Kishta is working every night this week and of course, is doting over Henry. He told the nurses in the infusion center that she liked him more than she liked her husband! She rubbed and kissed his head all night that first night and watched him close which made me comfortable. She and Henry had a date planned on Tuesday night before we were to leave for Radford. As soon as he learned he was coming into the hospital, he called her cell phone to cancel his date and to find out if she was working!

Okay, for some funny stuff…..

I mentioned that Dr. Levine and his family were in the UP (pronounced youpee) for their family vacation. This brought on another interesting fact that I wanted to share. In case you didn’t know (like me) , Michigan has an upper peninsula (UP) and the lower peninsula, that are connected by the famous Mackinac bridge. The locals in the upper peninsula are called UPPER’s (pronounced youpers) and they call the residents of the lower peninsula, trolls, because they live under the bridge! So funny to me and I thought you all may like to hear that, too.

As Henry began to feel better yesterday, he started asking about pranks that he might could play on the staff. So, Henry and his nurse, Sarah, decided that they would get a clean male urinal and add some apple juice to it. He would wait for his “victim” to enter the room and then say that his urine smelled funny. He would open the lid and then say that he thought he might just taste it. As he would turn it up, I would (pretentiously) beg him to stop. Of course, lots of staff and poor Kari, while getting Samuel, fell for this GROSS prank.

This hospital stay, Henry has been reading everything that is posted on the walls or doors. He keeps squealing at me every time that I use the bathroom in his room because the sign on that door says THIS BATHROOM IS FOR PATIENT USE ONLY. I didn’t have that problem last hospital stay, because he was just not interested in reading at that time.

Another funny that is related to that is that the we were in the hallway with the Thelens early evening yesterday. I saw Renee pick Maddie up and start quickly walking to their room with a nurse. Asked Renee what was wrong and she said, “Oh nothing, she is just going to get a P-O-K-E(spelling it out). Henry quickly yelled, “Why is Maddie getting a poke?” Which was exactly what Renee was trying to prevent Maddie from hearing….Oh boy, this hospital stay has been interesting.

Thank you all for praying for Henry today. He is doing great. We just need to keep that fever away so we can get out of here.

Believing as Gavin taught us, Angela

Tuesday, August 7, 2007 1:30 PM CDT

We were greeted with familiar faces of the staff on 7Mott yesterday. Everyone was so kind and amazed at the changes in Henry. They were all sad of course, when speaking about Gavin. We all kind of comforted each other and so far, we are recalling some great memories with much laughter. I do have to say that I get an urge to look in the window of “his room” when I walk past it. We will all get through this and let his light shine in us. There is a new tribute video on his website that is sweet and another longer one on YouTube that has background audio of him singing a song that he recorded here back in May. Just go to www.youtube.com and enter Gavin Brunin into the search box and it will pop up. There are several photos that you will recognize. It is very sweet, made me smile, wish I could kiss his head right now.

Late Sunday night, Renee Thelen and I were planning our trip to Montague to the visitation. I had to click on Gavin’s website for the name of the funeral home and didn’t know there was a new video that would automatically play. Henry and Samuel both heard the music, ran to the screen and watched it. I forgot to write down the time of the visitation, so I had to go back to the site again. Samuel watched the video closer that time, I noticed, but thought nothing of it. I talked to Renee, we made plans, and then it was time for “lights out”. Samuel started crying, not just tearing up, but large tears with his body shaking and all. He said that he really missed Gavin. I had never even thought of the impact that this could have on Samuel. He was with Gavin several times while Henry was in the hospital and also at the apartment. Samuel really connected with Aiden , Gavin’s younger brother. While comforting Samuel, Henry said to him. “Do you want to know what God said to them?” (meaning Gavin and Abbie) I was hoping that Samuel would say yes, because I really wanted to hear what Henry had to say. Samuel shook his head yes and Henry assumed his “preacher” posture and began to talk very seriously. He said, “God said Gavin, Abbie, it is time for you to come to heaven with me and stop suffering.” I looked at Henry and said, “Did you hear God say that?” He said, “No, I just know that sometimes God takes peoples lives and sometimes he doesn’t. He spared my life.” I said, “I wonder why he spared your life?” He said, “We just have to see how that plays out, Mom.” Who knows where he has heard all of those words before. I sit and wonder just what is going on inside his head. This morning, Maddie was visiting our room while Dr. Kitko made rounds. With our approval, Kitko rounded on both Henry and Maddie at the same time. She was talking with Renee over to the side for privacy, and Henry leaned over and said, “Is Maddie going to pass away, too?” I said “No!” She is just trying to be private and they have a lot to talk about. He now knows that anything can happen and I guess his imagination can travel in other directions with that knowledge.
I hate to say it, but I am so glad that the Thelens are here. The kids have played well together. We made a video of them, but the volume is low and I can’t figure out what the problem is. I am going to post it later, so adjust your volume to high. Samuel is struggling as my attention is more on Henry and he is doing everything in his power to shift it in his direction when the staff is in the room, trying to attend to Henry. I am so thankful that Kari and Bruce are coming to get him. He actually is thrilled and is not afraid of the trip. Faye (Granny Duck) always says that Kari is my twin (because we act alike) and that she kept Kari and gave me up at birth! Samuel will be just fine with them.

Okay, for the medical information…
WBC 1.6 down from 2.5 yesterday
Platelets 45000 up from 44000 yesterday
Absolute Neutrophil Count don’t have that one on the paper
Hemoglobin 10.3 down from 11.1 yesterday

There is bacteria growing in two of the ports of the central line. The treatment for that, since he really doesn’t need the lines, is to remove them. He is scheduled to get them removed tomorrow in the operating room. I do not have a specific time yet. The other treatment is 7 to 10 days of IV antibiotics so he will have an IV in his hand or arm for a day and then have another one called a PICC line inserted so that he can receive IV’s at home after discharge. The PICC line can be removed by nursing staff without anesthesia when the antibiotics are finished. We don’t have a concrete discharge date yet, but it is expected on Friday. He will need to be without an elevated temp for 24 to 48 hours and he spiked to 104F last night around 11pm. He is feeling better today, has had no elevated temperature, but still doesn’t have an appetite. He did not eat anything yesterday and wasn’t able to take his medications, until midnight last night. We hope that he can be seen in clinic next week and we can be back to Radford by midweek or the weekend. For those of you following closely, he has not had any of his “100 day tests” yet. They are trying to get those scheduled so that they will be completed by the time we leave for next week.

I felt so rejuvenated on Sunday night and was geared for this eventful week of testing. This past weekend, we ventured over to Yorkville, IL to the beautiful farm that Edward and Kim Block own. They lived in Radford up until about 2 years ago, and some of you may remember that she is the one who organized Henry’s fundraising ball. It was a short visit, but we enjoyed wonderful food, the relaxation of the surroundings of the farm, and rest on a comfortable mattress that is not positioned under a couple that stomps through their apartment at all hours of the night! Kim and Edward hired a massage therapist for me on Saturday evening which also complemented my restful night of sleep. Edward drove us around the farm and the kids squealed when they saw deer, hawk, and the largest cattle ever! Henry learned to ride a bike without training wheels and rode it for an hour outside on Sunday night, which is why the elevate temperature really shocked us all.
The BMT team is thinking that he has been fighting this line infection for a few weeks, therefore his counts have been falling. The infection is now in the blood and this requires quick action for a new BMT patient. This is the most common infection that a BMT patient gets after a transplant and is the reason for most re-admissions. He is expected to be out of here by the end of the week and the blood counts are expected to come up on their own.

This was a long one and I am sorry. I had lots of information to share and I hope that I didn’t bore you. I am tired, I miss Harper terribly, signing off and will do a short update tomorrow night.

Angela

Monday, August 6, 2007 3:21 PM CDT

ANOTHER UPDATE:
Two more angels appeared in our lives today to help us with our situation. Samuel has been so worried that Henry will follow Gavin to heaven. Sam was awake until the early morning hours worrying about Gavin. He is the first child our kids have lost. Sam is very sensitive and loves Henry with all of his heart. Angela assured Sam that Henry would be fine, and then hours later, Henry was admitted back to the BMT wing with a fever. Sam is beside himself, and it is almost impossible for Angela to keep Sam in the hospital with Henry. There are no other beds (or even room for one) in the hospital rooms. Faye McKinnon's (Granny Duck) daughter, Kari, and her son-in-law, Bruce Lester, were visiting Faye this week from Richmond. When they heard about Sam, they jumped in their van, with two dogs in tow, and headed to Ann Arbor. They will bring Sam home to me so that Angela can concentrate on getting Henry better. While Faye is like family, I hardly know her daughter and son-in-law. I cannot believe they would give up their vacation to help us. Please include them in your prayers tonight.

Because of Henry's admission, Angela had to miss Gavin's visitation and service. We cannot get Gavin and his family off our minds or hearts. Please pray for them and everyone who is missing Gavin so desparately.

ANGELA'S UPDATE EARLIER TODAY:

Just wanted to do a quick update right now. I will try to update more late tonight. Henry is being admitted to 7Mott with a central line infection. This is not something that he caught from anyone else, just a result of having a direct line into his body for bacteria to get into his body combined with a fragile immune system. It is very common for transplant patients to be re-admitted to the hospital after they are discharged, and so far, Henry has been very lucky. When he woke this morning, I could tell he was sick. I took his temp and it was 99.5F. By the time I got him to the clinic, it was 102F. They quickly got the IV antibiotics and Tylenol ordered, because they know how fast and how high Henry's temps can climb. He was extremely sad, Samuel is scared, and I am just tired.

Henry's counts have suffered with the infection and the GVHD is flaring up as well. There is talk that this could be the GVHD or an infection, but they are treating it as an infection right now.

WBC 2.5
Platelets 44000
Hemoglobin 11.1
Absolute Neutrophil Count 1900

Renee Thelen, Maddie's Mom, and I were planning to attend Gavin's visitation tonight, but we will both be on 7 Mott. Maddie was admitted today as well -check her sight for details.
www.caringbridge.org/visit/madelinethelen

I have more information to share but need to get Samuel and Henry some food. They are both starving and Henry has not yet been released to his room, so we can't order from the cafeteria yet.

Gotta Go. Believing, Angela

Friday, August 3, 2007 3:08 PM CDT

NEWS ABOUT GAVIN BRUNIN (Aug. 4, 2007)

I wanted to let all of you know that Gavin passed away this morning around 8:30am. He is a very special boy to us and helped Henry through some very difficult times. His mother, Mashawn, is an amazing woman and she befriended Angela immediately upon her arrival to Ann Arbor. Gavin has a beautiful little brother named Aiden. Gavin was an angel on earth, and now he is an angel in heaven. We will never forget him, and I ask that you say a prayer for him and his family. I don't think that Henry knows yet, but I am sure he will comfort us and tell us that it will be OK. My heart aches for Mashawn and Aiden and I cannnot imagine their loss. Their faith is strong and they will get through this. We will post an address if you want to send them a card or note.

I am leaving Angela's update below, in case you haven't seen it.

Hello everyone! The YouTube video was a hit. It has been viewed over 250 times with loads of positive comments to my email address. We were up late one night and discovered how to work the webcam on Patrick’s laptop. I kept snooping around on the internet and discovered that I could upload it to YouTube and keep it as “private” there, yet post it on Henry’s website. The boys loved making the video and are working on the subject for their next cut.

Henry had labwork today with no clinic visit. Thankfully, his marrow responded to the shot of Neupogen. The official results are:

WBC 4.1 normal is 4.5-13.5
Hemoglobin 12.0 normal is 12.5-16.0
Platelets 80000 normal is 150000-450000
Absolute Neutrophil Count 2500 normal is 1800 to 10000

All of the viral studies that were sent out came back negative and that is just great news. Any type of virus can wreak havoc on fresh bone marrow. That really sounds weird to me. I look at him and can’t believe that he had 2 bone marrow transplants, just months ago. I remember begging him to get up to the edge of the bed and now he is riding his bike for over a mile every evening. Each day, he gains more ability to control himself and I see the old Henry coming back. It is very refreshing and a huge sense of relief to me. He is changing every day with new interests evolving either as a result of the new DNA from the marrow transplant or just maturity. I purchased a biography of Abraham Lincoln written in 1964 at a great used bookstore here in Ann Arbor. I brought it home and he had read it within a week. He asked me to sit with him and help with the occasional prompt to correct him, and it was written for grades 2 to 4. Please do not read into this that I am bragging, I am so very thankful to see that his mental capacities have not permanently suffered from all of the intense chemotherapy, dose of radiation and that fever of almost 107F. I am so very proud of him for sitting down with me each week to complete his schoolwork while most children are visiting pools or out playing in their backyard. Samuel has benefited from all of this, too and is so ready to embrace kindergarten.

Samuel is still here with us in Ann Arbor. He really begged to stay, so Patrick and I agreed to just let him stay. Gail left (earlier than planned) late Tuesday evening due to some concerns about her husband, Joe. He is fine and therefore, so is she. She loved Ann Arbor and for once, she didn’t have to approach each person she encountered as a
“potential” member of the Democratic party, because virtually everyone here already belongs to it. She felt right at home!

I have been busy packing and my anxiety level is increasing as I do. I will have so much unpacking and organizing to do once I get back to Radford and I do not want my desire to do that to spoil my reunion with Harper. I filled the back of Gail’s van before she left and I have 3 large Rubbermaid tubs filled and sealed to ship to Radford, leaving enough room in my van for everything else. I had also moved lots of things home during my trip home back in July.

Henry has appointments Monday, Tuesday, and Wednesday next week, so we will probably try to leave Ann Arbor sometime on Thursday. I do not know if I will try to drive the whole 10 hour trip in one day or not, just depends on my level of fatigue (and my tolerance of the boys)!

I will try to post another You Tube from the boys over the weekend, so look for that. Otherwise, I’ll sign off for the weekend. Thank you all for your continued cards, emails, meals for Patrick, money to help with expenses, and most of all-your prayers. Knowing that you are all there, checking on us, has helped us make it through this.

Angela

Tuesday, July 31, 2007 12:27 AM CDT

Day 75 after the second transplant-yep Laurie you are right on track!

Clinic visit today was an interesting one. Henry's blood counts came in low which totally threw me for a loop. The liver, tacro, and magnesium levels were not back before we left, so I don't have those to post. His blood counts were actually so low that he needed a Neupogen shot! Thought we wouldn't ever have to see one of those again. The official results are:

WBC 3.3 normal is 4.5-13.5
Hemoglobin 12.0 normal is 12.5-16.0
Platelets 62000 normal is 150000-450000
Absolute Neutrophil count is 1500 today normal is 1800 to 10000

Dr. Levine was in clinic today (yeah!) and insists that it is normal for these numbers to fluctuate and this is "nothing to worry about". I actually had him to repeat this sentence twice for me. On a good note, his blood pressure was normal before his morning medication, so the blood pressure medication was able to be reduced.

After his clinic visit, we had to go back to the lab for additional blood work to determine if there is any sort of viral or bacterial infection that his body is trying to fight,- either could cause lower blood counts. Another cause for the low blood counts could be the immunosuppressants that he has to take to keep the GVHD at bay. Dr. Levine has a specific plan and I am confident that it will all be fine. Henry has to go to the lab for bloodwork again on Friday, he has another clinic visit on Tuesday, and if all is well up to that point, he will have both of his central lines removed on Wednesday of next week! That means that we can plan to leave for Radford by the end of next week. In addition to his line removal, he is going to have all of the "100 day tests" completed next week -earlier than usual. That entails a re-test of the lung function, kidney function, vision, hearing, heart, and a bone marrow biopsy. It will be a busy time, so we have decided to let Samuel ride back to Radford with Gail. He will be able to attend a birthday party and attend the New River Valley Fair where he and Henry both have art work entered for judging. If you visit the fair, make sure you stop by the exhibit hall to look for their paintings. Their Dad worked real hard to get them framed and delivered to the fairgrounds on time.

So for an update on last weekend...we actually went to Canada! Gail brought our passports with her, so we took the boys over to Windsor, Canada and we all got our passports stamped in Canada. Windsor is not a very exciting place, so we visited a beautiful park and took photos for future proof of their visit to Canadian soil. I rented movies and Henry has watched The Alamo with Gail probably 6 or 7 times and been reading books about Abraham Lincoln and John Henry. Thank God she is here because he has asked a million questions about them and of course, Gail was able to throw in a few political comments with her responses! Her comments were unbiased-I promise ;) We have also enjoyed biking as the weather has been absolutely beautiful here. It has stayed in the low 80's with an occasional threat and shower of rain.

Harper is back home with Patrick and is amazing. He is talking in complete sentences and begs to call me on the phone. I cannot wait to wrap my arms around him. Henry's improvement has allowed some guilt to seep in regarding my absence with Harper. I know it sounds crazy, but it is very real and threatening to me. I have truly enjoyed the time with Samuel and feel that he is very secure with Henry. He worships Henry and really doesn't want to leave him right now. I have explained that we will be home about a week later and that neither of us will have much free time to play next week, so he is reluctantly agreeing to go back home.

Other news: I am going to load additional photos on the flickr page tonight. Auntie Beth took some awesome photos of them while they were together a month ago. You do not want to miss them, but don't look for them until tomorrow, because I won't get to it until late tonight.
Little Abigail Morgan passed away last evening. She was just a year old and was in the room next to us on 7 Mott. I am very sad, but I know that she will be there waiting to welcome Gavin, as sad as it is, I feel better about that. I know of a kitty cat that just entered heaven, too, so I know they will have a sweet pet to keep them company. I hope to attend her service, and if you are interested, I will post her website again.
www.caringbridge.org/visit/abigailmorgan

I probably will not post until later in the week. I need to start getting things packed and take care of finalizing things here in Ann Arbor. I have tears writing this, as I have always BELIEVED, but I am overwhelmed with the idea of leaving.

Angela

Friday, July 27, 2007 6:59 PM CDT

I'm home in Virginia, and it is extra lonely without Angela and the boys. I don't think more than an hour passes without thinking about Henry's buddy, Gavin and his family, and Abbie and her family. I know how deeply sad I am, and try not to imagine their parents' pain. Even though we walked on the edge a few months ago...it was never this real to me. Somehow, I believed Henry would survive. I think I believed every child on 7th Floor would be healed. Please say a prayer for the comforting of their families. We haven't seen an update on Gavin for a week, but hope they are OK.

Henry's Tacro level is ok. I don't know anymore yet about his liver and GVHD. I emailed a desperate letter to Dr. Levine today, begging for early parole for Henry. Please send positive thoughts his way so they can come home...at least for a couple of weeks.

I am meeting Angela's mother, Ruth, or "Gran" as the kids call her, tomorrow near Gatlinburg, TN to pick up Harper. He has been in Alabama with her for three weeks, and I can hardly wait to see him. I have missed him so much. It has been only three weeks for me, and it seems like an eternity. Angela has missed him since March. If they can't come home soon, I will get Harper up to Michigan for a visit. It is going to be quiet at Gran's house. Harper has been in charge for three weeks. I hope she can get along without him telling her what to do, and when to do it! We thought Henry's room would be finished by the time Harper came home, but we are waiting on the final touches with the HVAC and trim work.

Gail Montouri arrived in Ann Arbor today for a visit, and I know Angela and the boys were excited to see her. Gail is always loads of fun, and has been a great friend to us through this difficult time. She speaks her mind, will make the young men mind their manners and I am confident that she will make Angela leave the apartment for some time to herself, while Gail entertains the boys...or they entertain her.

Yesterday was a great day for Angela and the boys. They went to visit little Maddie, who turned three! They met the Thelan's at Maddie's grandparents' home. They have a pool, and Henry was allowed to swim for the first time this year. I think Angela had to change the "tips" on Henry's central line ports, but otherwise he had a great, "normal" day. (ANY normal day is a GREAT day!) Angela said Henry and Samuel fought over Maddie's attention. We are all crazy about her! They went to see a Catholic church out in the country. Angela said it was beautiful and reminded her of "The Sound of Music" (which is one of her very favorite movies). Outside, they had a stamped concrete "Rosary Garden", which Samuel thought was called a "Grocery Garden". Inside was an old-fashioned confession booth, and evidentally, Henry practiced confessing. He was only out of the confessional for a moment when he began arguing with Samuel. Maddie's mom said he needed to go back for more confessions! Angela took lots of photos -click on the Flickr link below to see them.

If anyone has a "connection" with someone at the CIA, the FBI, the Secret Service or knows the Queen of England, Henry would like his "Secret Agent" license as soon as possible. He doesn't think he can wait until he is 16. He is still James Bond crazy, but has said that OO7 "wrestles" with the ladies too much-and that's not very nice! Thank heaven that the movies he has seen are the old ones and when they were rated PG, it really meant "PG".

Finally, I have had many people tell me that the characters on the "Parents for Sale" t-shirts really resemble Angela and me. While Angela does have a blonde bob hairstyle, I assure you that I look very different from the dad on the shirt. I have SOME hair.

Believe my boy will be home soon, and that we will all be together in Radford. Angela will update soon. -Patrick

Tuesday, July 24, 2007 3:25 PM CDT

Day 69 after the second transplant

We are not on our way to Radford! The clinic visit was good, but we did not get a ticket to Virginia. The steroid taper is going to be weekly now, rather than bi-weekly. The large dose of daily antibiotic (Levaquin) has been stopped and the high blood pressure continues to be a concern. I will need to keep a blood pressure log for the next week which will help with the decision of what to do with that. His weight is a whopping 58.5 pounds, a gain of 15 pounds since March.

The official results are:

WBC 4.8 normal is 4.5-13.5
Hemoglobin 13.3 normal is 12.5 -16.0
Platelets 82000 normal is 150000 to 450000
Absolute Neutrophil Count 2800 normal is 1800 to 10000

The ANC and the platelets have slightly dropped since last visit, but it is normal for these to fluctuate. The physicians continue to be amazed at Henry’s progress and want him on a lower dose of steroids and the blood pressure better controlled, before we return to Radford. We have a clinic visit again on Tuesday and hopefully then, we will have a date for our return to Radford. We discussed our faith in Dr. Gehrz’s ability to manage Henry’s care on a daily basis, and Dr. Ferrara really wants us to begin to rely less on them for that and more on them for the long term management of the graft versus host disease (GVHD) issues.
Speaking of GVHD issues….it can affect the lungs-no problem there, the skin-no current problems there, or the liver…well…that is being watched. His ALT liver count has increased again today. This could be a result of a very high Tacrolimius/Prograf level or the GVHD attacking the liver. With this uncertainty, the high blood pressure, and the change to weekly steroid reductions, I know it is better to be here than home.
My heart is aching with homesickness. It has worsened just in the last week and I just don’t know how I can endure this much longer. I feel so terrible for complaining, after all, it could be worse. I just want to get back home and get the family back together. I can’t say get back to “normal“, because that is only a setting on your dryer, right Fran?
Henry has an appointment on Friday for a blood draw to check the Tacrolimus/Prograf level and the next clinic appointment is on Tuesday. We hope to visit with Madeline Thelen, her sister Emma, and her mom Renee on Thursday. They will be great medication for the homesickness!
Make sure that you refresh your browser to see all of the new photos added today. We saw Morgan and Justin at clinic and their photos are on the “view photos” page. I wanted to share a photo of Henry’s donor letter. I hope you like it!

Believing that the liver counts are not a result of GVHD, Angela

Monday, July 23, 2007 9:39 PM CDT

Today was another fun day with the boys. We were very lazy earlier today, but finally got in gear later today. Henry wrote his donor a letter and drew a picture. He did it on his own and it is very sweet. He drew a picture of himself in a hospital bed with an IV pole and a bag of marrow hanging. The tube goes into his chest. He drew a smiling sun and a RED CROSS. He wrote "your marrow" and drew an arrow to the bag. Then he wrote "my hart" (sic) with an arrow to his chest. Although it contains a couple of misspelled words, it is really sweet. I took it and had color copies made. We are taking it clinic tomorrow, and they will send it to the donor. When I get back to work, I will try to scan it and put it on his web site.

Angela works diligently with Samuel and Henry on "school work". I am very impressed with how Henry's reading and math have improved since he left the hospital. Sam has always been "bookish" and he should certainly be ready for kindergarten. Since his transplant, Henry has become a lover of disco, Elvis and James Bond...all very strange for a seven year old. He is learning the theme songs from the movies. My favorite rendition is "The World is Not Enough". I don't think it is supposed to be funny, but is cracks me up. He listed the movies Angela has rented for him and told me of one of which I was not familiar. He called it "OOPSIE". When I said I didn't remember that one, he handed me the dvd box for "Octopussy". Thankfully, phonics does NOT work for Henry. To be such a good reader, I am not sure how he got "OOPSIE" out of that! Nonetheless, I am thankful. Those Bond movies have many "clever" names for the female leads. He is too young for these movies, but then again, he is too young for most of what he has endured. If it makes him happy, and it isn't rated R, we will deal with it.

Every day here is a gift. You forget how much you miss your loved ones until you are reunited. The trip home tomorrow will be difficult and sad. There is a HUGE empty space without Harper, and Angela cries daily for him. Now that Henry is getting better, it is easier to let your heart yearn for the other two boys. Sam is here with Angela and Henry, now, but Harper is still with Gran. When we talk to him on the telephone, he is very talktive, but doesn't seem to miss us at all...which is all the more painful. We know he is in great hands, and that does make it easier. Angela has only seen him for about two weeks in the last five months. He has grown and changed so much since March.

As hard as it is to be away from him during this time, I cannot imagine saying goodbye to your child forever. Each day we are reminded of how fortunate we are that Henry has been healed, and how very much our heart aches for the three families in Floyd who recently lost their little ones, and for the struggling kids we met here. It isn't just a fleeting sadness. It is a real, physical heartache, and it is sometimes hard to hold back the tears. The nights are the hardest...when we are lying quietly and have time to think and count our blessings. Henry talks about Gavin every day and we pray for his family to feel the love and healing they need. Angela asked Henry if he ever thought he was going to die during the transplant. He said, "No. I was really, really sick. I mean aweful sick. But GOD told me it was not my time to die. It just isn't my time to die." Of course, we both teared up, and then Henry started singing, "I'll Die Another Day", which is the theme from another James Bond movie. We both cracked up and hugged and kissed him. I know we've said it before, but this kid is amazing. He has a gift of faith, and has always comforted US during his scariest moments.

We are going to clinic tomorrow for an appointment, and Angela and I are going to beg for an "early release". We just want to be home in Radford, and have the whole family together. Speaking of clinic, the transfusion room is being renamed when it is moved to the new hospital. It is in the cancer center now. There is a contest and we want your help in picking a name. The transfusion room is where kids like Henry go for follow-up treatments like platelets and blood, as well as ther meds. Some kids, who don't transplant, get all of their chemo there. The room was made possible by a financial gift from Brandon Ing, who is from Virginia and now plays for the Detroit Tigers. Put your clever hats and start thinking.

Enough for tonight. We will let you know how clinic and our begging goes. - Patrick

Saturday, July 21, 2007 10:46 AM CDT

After a cancelled flight, begging and practically crying, I was able to be re-routed on another airline a few hours later. I made it to Ann Arbor a little after midnight, Thursday. As I was waiting at the baggage claim, someone tapped me on the back and said, “Excuse me sir. Would you like some help with your luggage?” I turned around to find a 4 ft. tall, chipmunk-cheeked Davy Crockett, complete with moccasins and a coon skin cap! Of course, everyone was staring, but I had to hug and kiss my little man over and over. I removed his hat and kissed that round head (lightly covered with black “peach fuzz” about 20 times. I forgot how much I missed him. All of this happiness came to a halt when Henry said, “Dad. I have some bad news. Gavin’s going to die.” I choked back the tears and hugged Henry. I thought I was coming to Ann Arbor to help Angela tell Henry about Gavin. Henry then said, “It’s going to be all right. He is going to heaven and he will still be my best friend forever.” (I am teary trying to write this.) I asked Angela if she told him, and she was surprised he knew. She had not told him. Somehow, Henry just knew. The same way he “just knew” his transplant was going to work and that his “cells were going to grow”. “No tears, this is a happy time” as he said before. “It’s going to be alright.” We have always said we BELIEVE. If we truly do, then we must believe Gavin is going to heaven where he will be completely healed and pain free. I was able to tell Gavin goodbye yesterday. He hugged me and said, “I love you.” I hugged his mom, Mashawn, and little brother, Aiden. Their family was going by limousine to a Detroit Tigers game last night. They got to sit in a sky box, which two of the players wives let them use for Gavin‘s comfort. It is very sad, but they are strong and will get through this. Gavin has been on this very difficult journey for 2 ½ years. His father left the family after one of his transplants, and it has been hard for Gavin, his mother and brother. When they leave Ann Arbor, they have no home to go to. It was sold after the divorce. Recently, a used car was donated to them by a Michigan dealership. I know her ex-husband has been of little support. This is a wonderful mother who has sacrificed everything for 2 ½ years to try to save her little boy. Gavin’s brother Aiden is 4 years old and is a perfect match for Gavin. He was the donor for the first transplant. When the very rare form of leukemia returned, Mashawn was the selected to be the donor for the second transplant. Again, they were given the news that the leukemia had returned. The U of M BMT team debated on what to do, and decided that this little boy had a strong desire to live and together with Mashawn decided on the daunting task of a third bone marrow transplant. The donor for the third transplant was a “double cord”-new procedure that is in clinical trials right now. It is 2 separate umbilical cords that are transplanted at the same time. The goal is to create an environment where the new graft fights the leukemia cells in the host with the goal to eventually kill all of the bad cells. That worked for a while, but eventually those very aggressive and very rare JMML (leukemia) cells returned. “Team Gavin” fought hard with Mashawn researching every option that was possible. Gavin’s kidneys are not holding up with the daily low doses of chemotherapy that have kept the JMML away in the past. That is when Mashawn and Gavin both were told that there was really nothing else that the BMT team could do. Dr. Yanik, who is Gavin’s primary doctor, sat with both of them and explained that they would be far better off outside of the hospital with the abilities to enjoy the little things like petting horses. They have been at the apartment, returning to the clinic every other day for transfusions and blood work. They now will go to her mother’s home several hours from here in northwest Michigan. We are going to miss them so much. Gavin’s journey has been long and hard. He and his mother have been a huge influence on us at the hospital. In the event that you would want to send them something, the address is MASHAWN BRUNIN 8686 Indian Bay Rd, Montague MI 49437.

Gavin, Mashawn and Aiden have become part of our extended family. They are very open about their plight, their needs and fears…as I think we have been. So many of you ask about Gavin, and we want to keep you informed. The Brunin family is very loving and giving, and deserve something good to happen for them. Anything we can do, either individually or as a community, would be wonderful for them, and a tribute to Henry’s love for his buddy, Gavin.

Love your kids extra today and keep Believing!

-Patrick and Angela

Thursday, July 19, 2007 8:49 PM CDT

I wanted to do an update tonight to remind everyone that Henry does not have a clinic visit tomorrow. Since he had his last Enbrel shot, his next visit is on Tuesday. I know that he will need to be seen the Tuesday after that for another steroid reduction and hopefully after that, his visits will be moved to bi-weekly.

We have been experiencing some strange weather today with tornado warnings and high winds. The weather has cooled off a bit so I guess we are still better off than all of you down South! You will all be happy to know that I hired Erin to keep the boys this afternoon while I enjoyed a massage, a manicure and a pedicure. All of this pampering, including the payment to the sitter was a result of the gift cards and froggies that some of you have sent to me. Thank you all very much. The masseuse mentioned that my neck region was really tight and I just grinned and said “Really?” I mean, I should be just fine after sleeping in a recliner, in a hospital bed, or on a terribly firm mattress for the last 4 ½ months, right? I feel great now and I hope it lasts until I can get back to my best “back cracker” ever, Dr. Cooley! I’m too much a of a chicken to try anyone here.

I probably should clarify that I really didn’t make any big purchases in Chicago last weekend. I had received a gift card from my Dad and Sheila to a store that was in Chicago, but not in Ann Arbor or Roanoke, so I took the opportunity to spend that and I looked for a nice evening bag, but no luck there. The stores didn’t open until noon on Sunday, so we didn’t have much time to actually shop. We did walk Michigan Avenue (the Magnificent Mile) to adore the beautiful plants and building architecture. That was a huge treat for me and I really enjoyed just browsing.

Harper continues to stay with Mom in Birmingham. I hope that he still remembers me. He seems very happy when I call him. I feel the need to be with him right now, so I hope the BMT team will be receptive to our request to return to Radford. Patrick will arrive tonight and stay through Tuesday, so he will be able to attend Henry’s clinic visit with me. Let’s pray that his plea bargaining skills are not too rusty!

Wednesday evening, the boys and I stopped by to check on Mashawn and Gavin. They live at this same apartment complex. I was checking to see if I could run any errands or help with anything that she might need before they leave. Her Mom and best friend were both there helping, so she has great help right now. Her son Aiden hopped right into the van to play with Henry and Samuel while we talked. She brought Gavin outside to see us and he had the biggest grin. He asked to sit in the van so he could talk to the kids. I don’t know why but I asked if he wanted to ride over to see the horses. He quickly said yes and so we told his Mom goodbye and rode over to the beautiful farm that is less than a mile from the apartment. I carried him to the fence and he was able to touch the horse. I took some photos with my phone camera that I am going to try to post on this page. If not, I will load them on the Flickr site. Click on the link at the bottom of this page and it will take you to it. I feel better after having spent that time with Gavin. He rubbed my cheek and pulled my hair behind my ear and hugged me tight. Henry became very sad when he heard Gavin struggle with some coughing. He reached over and touched Gavin’s hand and said that he really enjoyed having him as a friend. I know that Gavin will go to heaven and will watch over Henry. I guess I just don’t want Mashawn to lose her oldest son. Mashawn is getting things prepared and is having some trials with her ex-husband so please pray for her strength. She told me that the end is near and she has several specific things that she wants to do with Gavin and Aiden together as a family. In the event that you would want to send them something, the address is MASHAWN BRUNIN 8686 Indian Bay Rd, Montague MI 49437

I will get Patrick to update you this weekend. His stories are great entertainment. Have a great weekend-

Angela

Tuesday, July 17, 2007 5:41 PM CDT

Day 62 after the second transplant

We had a very fun day today in clinic. We saw Maddie, Levi, and Ali and I was able to capture some sweet photos. Unfortunately, the laptop program that helps me to resize the photos to allow them to upload onto the Caringbridge site, is not responding to my prompts. I am going to get it to Best Buy tonight to see if they can help. I promise to load them as soon as I can. I will try late tonight to load some on our Flickr photo page, so check that tomorrow. (Link is at the bottom of the page.)
Today we saw Dr. Ferrara for the clinic visit. He is the head of the BMT program and was able to see Henry during the engraftment phase of his second transplant. He was impressed with Henry’s progress and did in fact reduce the steroid dose this week. Last week during the clinic visit, there was talk that Henry may be able to return to the classroom setting in late August, but Dr. Ferrara mentioned today that it may be after the Holiday break that he is able to return to McHarg. I feel that his biggest hurdle for returning to school will be fatigue and self control, not the risk of infection. His immune system is recovering in other ways than just blood count readings, therefore the decision for his return to the classroom may differ with my thoughts. Whatever the decision, I know that McHarg Elementary will work with us to meet his needs. Henry really wasn’t able to complete any schoolwork while in the hospital, so we have been diligent to designate time each day toward school work. I have his actual school books and also have purchased some helpful things from a local educational store. We have been reading quite a bit, which is also benefitting Samuel.

The official blood counts are:

WBC 6.7 normal is 4.5 to 13.5
Hemoglobin 13.2 normal is 12.5 to 16.0
Platelets 90000 up from last week! Normal is 150000 to 450000
Absolute Neutrophil Count 5200 up from last week! Normal is 1800 to 10001

The platelets are the last to engraft and seem to finally be enjoying their new home! Everything else is within normal range, except for the magnesium, phosphate and that liver count. Even those three tests are nearly inside the normal ranges, so no need to worry.

Ok, for the update about our weekend. Friday after clinic, we napped and then ventured down to the Cabela’s store near the Ohio state line. This is very much like a Bass Pro Shop with many specimens of stuffed game posed around the store as well as a large aquarium with fish that are indigenous to this region. Henry really enjoys this store and of course, came home with another (Toy)gun (thanks to all of you sending those cards with the little froggies enclosed). This was Samuel’s first visit and he really enjoyed it and came home with a TOY gun too. We woke early on Saturday and made our way to the west coast of Michigan where we had heard rumors of the presence of a “beach”. Yes, we giggled about the description, as we know that the gulf coast of Alabama has the best beach in the United States. Oops, was I supposed to keep that a secret? Well, to our surprise, they do have a beach and Lake Michigan has waves! Both were beautiful and breathtaking and I am so glad that we took the time discover those small bumpy roads as the views were well worth the time. We finally arrived in Chicago sometime around 6 pm. We had trouble locating a vacant hotel room, but finally found one near the Magnificent Mile. We still needed a cab to get around as Henry doesn’t tolerate much walking. We ate dinner at an authentic Chicago Pizzeria and then taxied to the Sears Tower. You would think that the night would not offer an impressive view, but think again. Those lights were incredible and the boys were just giddy with excitement. I purchased a postcard for Ali as she is collecting post cards this summer and is asking any of you to send one from your hometown or vacation destination this summer. Will you please help her out?

Ali Aardema
1370 Horseshoe Circle #102
Ann Arbor, Mi 48108

Henry, Samuel and Ken visited the Shedd Aquarium on Sunday while Sonia and I shopped on the Mag Mile. It was so much fun and much better than I recall it during my visit about 15 years ago. It is a clean, safe, and family oriented city with lots of fun events. We returned late Sunday night and had no trouble getting to sleep. We did not leave the apartment yesterday and just rested as Henry needs to do that to stay healthy. Sonia and Ken, however, ventured over to the Henry Ford Museum and into downtown Ann Arbor and really enjoyed it. They left this morning and I hope that they had good weather for their flight. What a fun visit with a great high school friend!

Gavin was not in clinic today and is experiencing some difficulty with the return of his leukemia. He is Henry’s buddy and has been a big part of our lives since March. He and his Mom, Mashawn, will return to Montague, MI on Saturday when Hospice will assume care for Gavin. We were going to visit them today, but they had other visitors, so we will get with them later this week. I will have much to discuss with Henry about this process, so please say a prayer that I will use the right words and have the right answers. Gavin is our hero. He was the one who could convince Henry to get out of bed, when we couldn’t; he was the one with the suggestions to me when I would stand at his bedside talking to his mom in shear desperation; he is the one that Henry asked about even on the days that he (Henry) couldn’t raise his head off of his pillow. Yes, they are close, and this is going to be hard for us. I don’t have any words to express my emotions right now. I am just sad. The link to his website below is now working, in case you want to keep up with him.

I have been extremely homesick since our trip home 2 weeks ago. I am feeling the need to be with my entire family, now that Henry is doing better. I am hoping that we can get it worked out to travel back and forth to Ann Arbor on the Angel Flight for Henry’s appointments. The social worker made some calls today and is trying to get it worked out for us. I am going to ask the BMT doctor next week about the possibility of returning to Radford as our home base and traveling back to Ann Arbor every two weeks by Angel Flight. Keep your fingers, toes, and everything else crossed!

Believing as Gavin taught us, Angela

Friday, July 13, 2007 11:01 PM CDT

I was filled with sadness when I learned of the passing of Pamela Collins today. What a strong lady with a wonderful family behind her. I hope that some of you will take time to post some supportive words on her care page. www.carepages.com enter pamelacollins in as the page name.

Day 98 after the first transplant
Day 58 after the second transplant

Today was a great day in clinic for Henry. Here are the official blood counts:

WBC 5.9 normal is 4.5 to 13.5
Hemoglobin 13.3 normal is 12.5 to 16.0
Platelets 87000 up from 68000 last week normal is 150000 to 450000
Absolute Neutrophil Count 4100 normal is 1800 to 10000

His weight is holding at 57.2 pounds. His blood pressure was completely normal and he has only needed one of his two blood pressure medications this past week. His magnesium and phosphorus were low, so they increased the dosage of both of those medications to get those levels back up. The anti-rejection medication (tacrolimus/prograf will deplete the body of both of those). They left the other meds the same and plan to reduce the steroids again next week. Also, next week, he will get his Pentamadine nebulizer treatment that will last him another month and his last Enbrel shot. He is now down to only one dose of pain medication per day and 2 doses of valium per day. This is a great improvement, but he continues to experience leg fatigue and have heel pain from the neuropathy –both are a side effect from all of the chemotherapy. I am not sure if this is a long term thing or what, but he does not have paralysis, and for that we are thankful.
He continues on a large dose of a medication to protect his liver, an antibiotic, an anti-fungal med, an anti-rejection med, medications to protect the stomach lining and to prevent nausea, 2 types of pain medication-one is for the neuropathy, 1 immuno suppressant, blood pressure medication, magnesium, phosphate, and of course, the steroids. So, he is still requiring quite a bit of medication to keep things on the right track.
I have to say that I frequently get asked whether or not Henry is “out of the woods” yet. My answer is that “anything can happen and we hope that it doesn’t”. I want to try to live these post-transplant days just as we have lived the last 7 years. I want to respect his limitations while trying to allow our family to live life to the fullest.
Some of you may have figured this out already, but I am going to explain it to you anyway…. During the transplant process, I was given sheets to educate me on each of the medications that Henry received. When I read all of the side effects of the chemotherapy medications and the radiation treatments, the number one that is listed of course is nausea. On down the list you read SECONDARY CANCERS…..What???? you mean you can get cancer from anti-cancer medications? I guess that I had never really thought so much about it until I met Justin (transplanted same day as Henry) and his family. Justin came into U of M in January with lymphoma. He underwent all of his treatments, was deemed cancer-free, landed in Hawaii with his family for his Make A Wish trip, and was in the ER an hour later with leg pain that was diagnosed as leukemia. So, yes, you can get secondary cancers from the chemotherapy. I battled in my mind, “so Henry is trading the risk of getting cancer from the large doses of Neupogen for the risk of getting cancer from these pre-transplant doses of chemotherapy?” It was a battle that went on inside my head for days, and still does at times. I questioned Dr. Levine about it right before we left to come to Radford and he said that Henry has a slightly higher risk of getting cancer than the average population, but nothing like the risk that he had before the transplant. Ok, I can live with that-and so can Henry! So, when given the opportunity to take a road trip with friends, we will take it and run!

Sonia and Ken Phillips arrived yesterday and we decided to take a road trip (about 4 hours) to Chicago. Sam, Henry, Sonia, Ken and I all plan to drive over to the eastern shore of Michigan along the lake (Lake Michigan) and on into Chicago late tomorrow morning. We plan to spend tomorrow afternoon visiting the Sears Tower and hopefully the aquarium or the zoo. We plan to return to Ann Arbor late Sunday night so that Ken and Sonia can visit the Henry Ford Museum on Monday. They will return to Alabama on Tuesday.

I finally shipped the Believe magnets out today. In case you want one, I am sending 20 back to Bay Minette with Sonia, I sent 30 to my Mom in Birmingham, I sent 20 to Children’s Choice in Dublin, 30 to Lenore Jackson in Christiansburg, 30 to Amy McCracken in Radford, and 30 to Carrie Owens in Radford

Sonia Phillips
251-580-0044

Lenore Jackson
2900 Mudpike Road
Christiansburg, VA 24073
540-382-6515 Home
oneredhatter@aim.com

Carrie Owens
6681 Bradley Road
Radford, VA 24141
540-639-3554
ccowens@intelos.net

Amy McCracken
507 Harvey Street
Radford, VA 24141
540-639-4858
mc_amy25@hotmail.com

If anyone else is interested in getting a batch to sell, please let me know. I hope to send out several at a time, to avoid sending to multiple addresses. I sent these by 2 day mail, so they should have them on Monday. Good luck with the sales, and remember that the profit with benefit the new Mott’s Children’s Hospital bone marrow transplant unit.
Angela

Tuesday, July 10, 2007 11:07 PM CDT

Clinic today was just for the Enbrel shot, so it was a “fun visit.” Henry’s blood pressure was in normal range, so the increase in the blood pressure medication has worked! His weight is now up to 57.4 pounds! I have noticed that he has not been as hungry with the decrease in the steroids, but his weight seems to climb a pound or two each visit. He is not retaining fluid-he is solid and I am no longer able to lift him.

We learned that Dr. Choi had her baby girl yesterday, 7 weeks early and by emergency C-section. They named her Shera Nabi –Shera means song and Nabi means butterfly. Both are fine and for that we are thankful. Dr. Choi was the attending physician during both of Henry’s transplants and she is very special to us.

We saw Justin and his Mom at clinic today. Justin was transplanted on the same day as Henry’s second transplant. He is doing great and has been given the approval to return home which is about an hour from U of M. He loves hunting and fishing and Henry loves to talk to him about guns. Justin now has defeated lymphoma and leukemia. He is a wonderful person with a positive outlook on life and comes from a wonderful family. His younger sister, Jenna, was his donor and a very sweet girl.

We saw Ali today. She had an unrelated donor for her transplant which was May 10th. She and Justin are 9th graders and are working on their school work this summer. I am amazed at how Ali has the energy to do her schoolwork, practice piano, make flip flops (her side business), practice her PT and OT –whew-all of that makes even me tired. She is doing great and saw Dr. Levine in clinic today, who said she was free to begin some outings and may even be able to begin public school in the fall.

We missed Levi today, but apparently, he is doing great. His parents are a lot of fun and I hate that we missed him. He is Maddie’s “boyfriend” and that makes Henry a little jealous.

Speaking of Maddie, she was admitted to 7 Mott today due to a fever. We visited 7 Mott today and somehow missed seeing them. I really want to see her and hopefully, I can get by to see her tomorrow. She is doing great and the admission has delayed their trip to Cadillac, MI by a couple of days. Maddie, her sister, and her Mom do not let the grass grow under their feet, if you know what I mean!

Abbie is out of ICU and receiving radiation treatments. Her Mom noticed another bump on her head over the weekend and let’s pray that it, too, responds to these recent treatments. Julie, her Mom, is pregnant and is so very strong, but is getting so tired of being in the hospital. I think they have logged over 120 days or maybe more.

Gavin is in the hospital with a fever and Henry was itching to see him today, which encouraged our visit to 7 Mott. Gavin was resting, but Henry, Samuel and I poked our heads in his room to say hi and he responded with the biggest grin. It was priceless. Mashawn, too, is tired of these hospital admissions and longs to get back to her home town soon.

After clinic, we made our way home and listened to the rest of a book on CD and then I napped. I could not sleep last night and finally got to bed at 4am, only to get up and get ready for our clinic visit which was at 10. We played some board games and then called Eli Levine to see if he could go to the movie with us. We saw Transformers and it was great. The boys loved it and talked about it all the way to Eli’s house. He is a great playmate for Henry and Samuel and we are glad that Dr. Levine trusted his youngest of 4 boys to be with us.

Henry has a clinic visit on Friday. I probably will not update again until Friday night, so don’t get worried if I do not post. Thanks to all of you for continuing to check on us.

The Believe magnets are here and are going to be shipped out to Virginia tomorrow. I am going to ship some to my Mom in Birmingham and send some back to Bay Minette with Sonia when she leaves here on Tuesday.

Believing -that Henry is doing great! Angela

P. S. I plan to add new photos soon.

Sunday, July 8, 2007 9:44 PM CDT

We have had a pretty uneventful weekend. After clinic on Friday, we came back to the apartment and napped. We woke late and I made dinner here. Saturday, we were up early and off to the Farmer’s Market in downtown Ann Arbor. Wow! Fresh everything! We happened to see Gretchen, who is the nurse manager of 7 Mott, and she was very surprised to see Henry in such good health. Later Saturday, we ventured over to see Gavin, and we ran into Mashawn and Aiden (his younger brother) leaving to go to the hospital. Gavin had an elevated temperature and wasn’t feeling well, so he is back on 7 Mott. Saturday night, we went to the small fair that happened to be in town. This is probably something that we should not have done, but I finally caved in to the incessant begging from not one, but two kids. I took a bottle of Clorox wipes and used all but 3 of them! We went during a less busy time and left when the crowd started to gather. The boys enjoyed it and for the first time ever, I forgot my camera! I tried to get Henry to wear his mask to the fair and he refused saying, “All the kids ask me what is wrong with me (or my teeth) and I hate it!” So as I stood at the fence with the bottle of Clorox wipes waving to a kid with no hair, I was the one who was asked, “Does your child have cancer?” I had to explain that he never did have cancer, that it was a bone marrow failure syndrome and that he was now cured. It is a great opportunity to tell people how lucky they are to have such a wonderful hospital and a wonderful city, but awkward at times.
There are many wonderful things to do here in Ann Arbor. There are at least 4 libraries in town, all with extended community programs. There is a nationally known art fair coming from July 17th-22nd. There are about 15 parks here, 3 with swimming pools like the Frog Pond and Randolph Park. Still, it is not home.

It has been great having Samuel here with Henry. They have played well and continue to stick together when I try to “parent” them. I guess that is practice for years to come. Anyone who knows him would know that Samuel is really a “home body.” He has not once displayed any ounce of home sickness and seems very happy to be here with us.

Harper, on the other hand, did not fare so well after we left. I am sure that it was hard having just one person around to boss (Karen or Patrick). He wouldn’t eat and clung to Karen all day on Thursday. He was very, very sad-and so were we. I mentioned it to Mom on Friday morning, and by the time we were finished at the clinic on Friday, she had called Patrick and planned to meet him in Sevierville, TN to get Harper. She is going to keep him for about 2 weeks, I think. He is having fun there and seems very happy when I talk to him on the phone.

Today is day +53 after the second transplant. We are over halfway to the 100 day mark. Henry has not had any problems with the recent medication changes, and for that I am thankful. He has a clinic visit on Tuesday for the Enbrel shot only. He will see the doctor during his second clinic visit on Friday. July 18th will be his last Enbrel shot and then we will have clinic only once weekly. I am hoping that we will be able to come home for another visit at the end of July or early August. I want to be home for sure by the time Samuel starts kindergarten on August 23rd. Henry will not be able to attend McHarg Elementary this fall, but will receive homebound school (Ms. Wendy Phillips will be his teacher) until he is released to attend classes in the classroom setting. We hope that will be after the Christmas holiday break.

One of the reasons that we are able to get out of the apartment here is because we don’t really know anyone, therefore, we do not come in close contact with other people. I also feel that I can’t keep Henry secluded and then one day, release the boundaries, and expect that he isn’t going to get sick. If he is going to get sick, I would rather him be here.

Okay, long enough update. I am expecting a high school friend and her husband on Thursday of this week. Those of you checking the site from Alabama may know her, Sonia Phillips and her husband Ken. I can’t wait to see them and show them around this wonderful city.

Hope you had a great weekend. Angela

Friday, July 6, 2007 5:10 PM CDT

We are back in good ‘ole A2 (that’s what the locals affectionately call it.) Patrick kept referring to it as “home” and our conversations kept getting confused because his reference was the apartment and my reference was Harvey Street! Henry and Samuel are enjoying their time together and they keep “ganging up” on their Mother. I am hoping that Samuel will be the companion that Henry has needed and that I can finally catch up on some correspondence.

Henry had a great day in clinic. Dr. Kitko and Deb, the Nurse Practitioner, thought that Henry looked great. They were impressed by our ability to be in Virginia for a week with no problems. We hope that makes it easier when I beg for another week in late July! His counts were officially…

WBC 8.6
Hemoglobin 12.9 -finally in normal range!
Platelets 65000 -down from last time but these are the last to fully engraft
Absolute Neutrophil Count 5900 -awesome!

His blood pressure was normal this morning and his magnesium and phophorus levels were in normal range, too. I think his platelets were the only thing with an “L” in the column for “LOW” and his ALT (Liver) reading had an “H” for High-which it has been this way for months now. It was 48 and the normal range is 7 to 35. This has been high since his very first round of chemotherapy and is not a concern unless it is accompanied by a high bilirubin level-and that has always been in normal range. With all of those normal lab results, the decision was made to transition Henry to oral magnesium. Did you get that? NO MORE IV MEDICATIONS!!! This is huge and we are very excited about it. I still have to flush all four ports with heparin every day, but I can now do that with my eyes shut! The steroid (prednisone) was also decreased today with hopes that his graft versus host disease (GVHD) will remain dormant. The decrease in the prednisone can be a long process, but we will take it. These medication changes are great and are just what we need to get our ticket back to Radford, permanently!

The trip home was great. Several envelopes of money arrived just prior to our departure and while we were at home and this helped to pay for my gas, my tolls, my hotel room last night , and groceries to re-stock our refrigerator today. Thanks to all of you for your “froggies” that helped to make our trip home much easier on our pockets. I also received a very generous donation from my hometown church in White House Fork Alabama. This is the church that I attended as a child and has given me many fond memories of my childhood. The church is still filled with many of my relatives and wonderful people that have positively influenced my life. That donation will cover my rent for July and I am so thankful for that! Those blessings allow me to concentrate on my care for Henry and definitely relieve stress that I do not have energy for, right now.

I have so much gratitude in my life right now…for health, friends, and family. I read that little Chance Harman passed away today from complications from a brain tumor. I know that Pam Collins is fighting for her life and I can’t quit thinking about her children, her husband, and her entire family. I remember Eddie Stone talking at a Relay for Life function about survivor’s guilt and I almost feel that right now. No one is making me feel it, it has just happened. I need to translate that into Gratitude and allow that to be the center of my focus.

I have a little story that I told Laurie Buchwald during our bike ride on Wednesday. I am going to share it in hopes that you will benefit from it.

When I knew that Henry’s transplant was scheduled, I knew that there was potential to become close with other families that were on the transplant unit. I decided, long before I left Radford, that I was not going to get into much conversation with the other parents as I did not have time for “their problems.” The first few days on 7 Mott, I did just that. I kept to myself in the room, interacted with Henry and Granny Duck, and sat in fear of what was about to happen. Then one night, really late, I think it was on Thursday of that very first week, Mashawn (Gavins’ Mom) looked in through the glass on Henry’s room door and smiled. I walked to the door and she mentioned that she had water-soluble markers for Henry to borrow to write his name on the glass on the door. An hour later, she and I had decorated Henry’s entire room. That night, my life on 7 Mott changed. I realized that I needed those other families if I was going to make it through Henry’s transplant. Soon, I allowed little Madeline Thelen’s smile steal my heart, Gavin’s beautiful personality and advice become my daily devotion, Julie and Abbie Morgan become my source of laughter and comfort, and Levi’s mom to sneak me a Corona, and I began to listen to “their problems.” I did not always have an answer, but I had the TIME and the ear or the shoulder. That is all that the other parents needed, just like I did.

And now, our little Mott family is being challenged. Gavin’s leukemia has appeared in his latest bone marrow biopsy and Abbie is in ICU with an infection and is to have radiation soon to treat her recurrence of leukemia and I feel sad. I am glad to have them in my life. They remind me to be thankful, to be kind, to be helpful, to be comforting to them, to pray, to love and to live the best life that I can.

God bless the Harman family in Floyd. I hope that each of you has a wonderful weekend.

Angela

P.S. I may not update again until Sunday night.

Friday, July 6, 2007 6:58 AM CDT

It is quiet here, now, but what a great few days the Moore family had! Angela, Henry and Samuel left for Michigan yesterday. Harper kept "sneaking" into the van and tried to put on a seat belt. I had to pry his fingers away and carry him screaming into the house. That was sad. He clinged to Angela during her visit and woke up saying, "Where's my Mum?" His "mom" sounds like "mum" and it is kind of sweet. He has taken to calling me "Patrick" since Angela was home. It was a nice break from, "Hey, Dad. Hey, Dad. Hey, Dad." He begged to stay with Karen, our sitter, and even though I was sad, he was excited. I called at 9:30 last night to check on him, and he was still up having fun. They are part of the family to us, and he is the boss of their family (in his mind).

Angela got a late start because it was so hard to leave. Michelle Shafer and her girls came by and brought a basket full of wrapped "surprises" for the trip, along with a book on CD and gifts for Angela. Angela said the surprises were a wonderful way to reward good behavior on the trip, and the boys loved them. Thanks. Henry stopped by to see his friend, Allison Bishop, on the way out of town. He is crazy about her...which seems either very advanced or very strange for a 7 year old. I was at least in 5th grade before I thought girls did not have "cooties".

They made it to Canton, OH before they stopped for the night. They were up early and on the road this morning. Angela wanted to be certain that they made it to Michigan for Henry's clinic this morning. Time for me to go to work. She will update later and fill you in on our great time together.
Thanks for your prayers, good thoughts and believing that Henry could be healed. God answered our prayers.-Patrick

Wednesday, July 4, 2007 6:10 AM CDT

Happy Independence Day to all of you! We hope your day is safe and fun.

We surprised Dr. Gehrz yesterday with a “well visit” and it was an emotional and sweet reunion for all of us. I hope that you enjoy the photos. Henry speaks in medical lingo now, so I can just sit back and let him conduct his own visits with Dr. Gehrz –Yippee!! Patrick and I spent the afternoon trying to get things picked out for Henry’s room renovation. He has been sleeping upstairs during this trip home and the renovation is beginning on Thursday. It was great to come home with dinner walking through my door from Kelly Wheeler. Thank you Kelly for that labor of love, it was delicious.

Some fun memories of our visit home….

A big blue welcome home banner on my front stoop
The blue and green ribbon on my mailbox
The whisper of air through Sam’s missing tooth when he talks
A little blonde head of hair flowing in the wind as he ran around the van to hug me
The comfort of my wonderful mattress
Hearing Harper’s new words
A fun visit with Granny Duck
The confidence of knowing that my children were in the loving care of Auntie Beth while I was able to get away to Roanoke with my husband
A dozen of pink roses waiting on me when I arrived-from my husband
Greetings from our neighbors, the McCrackens and the Cosmatos
Surprise chocolate biscotti from Katy the Cake Lady and a sweet Bee-liever cookie jar with other sweet gifts for the kids
Recognizing Samuel’s maturity
Fun Flops in my favorite colors from Vanessa
A special visit with Dr. Gehrz
A Believe candle holder and hero cup from Vicki and Howie Phillips
Finally meeting Starlet Elkins-see photo on view photos page
A bottle of champagne from the Rehaks
A wonderful dinner in Roanoke with Ted and Callie, the Goldsteins and the Stump/Sams
An impromptu cookout with the Coveys
A toast to health and sanity with Fran
Watching Henry throw the football in our backyard with Godfather Jimmy
A bike ride with Laurie
Grocery shopping at Wade’s Supermarket!
Yummies from Amanda
A wonderful Believe plate that was left at my back door, anonymously
Fresh Vegetables from Wendy Phillips and family
Beautiful flowers from the Goldsteins
Dairy Queen Ice cream cake from the Skewes
Dinner at the new Mexican Restaurant with Diana
A cookout planned for today with the Westons
Realizing that Henry is truly a miracle.

We do feel loved. We do not take any of it for granted. We are overwhelmed by your comfort and almost feel unworthy of your generosity to our family. We truly love you all from the bottom of our hearts. We will leave very early tomorrow morning for our trip back to Michigan. We have really enjoyed our time here at home.

Angela

Sunday, July 1, 2007 8:22 PM CDT

Greetings from Radford….

It has been a great time at home thus far. The boys have dressed up in every Halloween costume that I have had since Henry was a baby. They change, Harper screams about being scared, and then he joins them. They assume the personality of each character with poses, props, and noises. It is very cute. They have snuggled, fought, and played together like normal brothers would do.

Henry has blended back into the mix very well. He first wanted to have a disco party in his basement bedroom. He would purchase a disco ball with his “stash” and then charge $5 for the boys and the girls are free! Yes, he is his father’s child!

I have been tired. I have felt obligated to be with Patrick for the Miss Virginia gatherings, felt obligated to Henry to get his meds perfectly scheduled so that he could play with his brothers on the water slide and not be bothered by a 2 hour IV. All I have really wanted is 1 hour by a pool with total peace and quiet and so far that has not been able to happen. We gave Miss Karen Monday, Tuesday, Wednesday off so it will be a busy few days before we leave for Michigan.

I will try to post photos before we leave, but probably won’t get to sit down to post a journal entry before we leave. Just know that we are enjoying our time together. The meals that have been made for us are a wonderful surprise. Thursday, we had delicious veggie lasagna (but it had “fake” meat!) from the Piro family and today, we had a chicken, mashed potatoes, and green beans with a delicious oreo dessert from the Misty Henderson and family. Thank you to everyone that has been preparing meals. It truly is a labor of love and I want you to know that it is truly appreciated.

I did not get to attend the Mass today, but I heard that it was a wonderful tribute to Patrick’s parents. He and his sisters and their husbands were there and I wasn’t able to be there. I think that I am finally just exhausted. I hope that I feel better over the next few days so that I can make that 10 hour drive back to Michigan on Thursday.

Have a wonderful Independence Day with your family. We will definitely enjoy our time together.

Angela

Thursday, June 28, 2007 6:53 AM CDT

We made is safely to Radford at 6:15 last night. Henry didn’t start the “Are we there yet?” until we were about 7 hours into the trip, but poor Sable meowed the whole trip. Then he started predicting the reactions of his brothers, his Dad, and his sitters. Then he asked, “Mom, who are you going to hug first, the spoiled one, or the rotten one?” I just laughed and told him that I would hug the one that he didn’t. We were greeted by a sweet banner on our front porch from Wendy Phillips and her family. Our Harvey Street neighbors welcomed us home, too. The Cosmatos dropped off a bottle of wine and the McCrackens brought balloons, wine, and cookies that tempted poor Harper until I finally agreed to let him get into them.

The boys have been really sweet together. Henry keeps telling me how happy he is to be home and to be back around his family and in his home. I definitely feel that same comfort. My bed felt so great and I slept better than I have slept in months, well, someone was in the middle of our bed, and I’ll let you guess who that was.

I want to say that this would not have been possible without the help of Dr. Gehrz. I would not have been secure in bringing Henry home yet, without knowing that Dr. Gehrz was going to be in town to check on him should anything come up. I called Dr. Gehrz and he gladly agreed to be there for us and I really appreciate that. We have a deep affection and appreciation for Dr. Gehrz and we feel so lucky to have him as our pediatrician. The BMT team at U of M was very helpful, too. They made sure that we had everything we would need for our trip and we are so thankful that they agreed to let us do this so early after the transplant. Henry is doing great, but is still on an IV for 2 hours every night and on antibiotics, anti-fungal meds , anti-rejection meds, and major doses of steroids(as you can tell by those full cheeks) that all need to be weaned soon. The BMT team agreed to leave everything the same and wait to try to taper the steroid when we return to Michigan next week. I do believe that this trip is the best medication ever prescribed.

Hope you enjoy the photos. I may not post again until the weekend. I want to enjoy every minute of my time. Oh yes, I have a new name….it’s “Hey Mom” and I love it.

Angela

Tuesday, June 26, 2007 12:45 AM CDT

Another clinic day full of good things...

White blood count 7.8
Hemoglobin 11.8
Platelets 71000
Absolute Neutrophil Count 5400

These are great lab results. That new marrow is working so great and I think about my gratitude for the donor with each moment of excitement about Henry's progress.

I tested my luck a little today and asked for a week long visit in Radford. The BMT team agreed to let us drive to Radford tomorrow and drive back on Thursday July 5th. Henry will need to be seen in clinic again on Friday the 6th. As you can imagine, I am so excited. Henry is bouncing off of the walls.

Sunday, a new baptismal font is being dedicated at St. Jude's in honor of Patrick's mother followed by the internment of his father's ashes in the church columbarium. It will be an important time for his family and I wanted to be there.

Independence Day will forever have a different meaning to us and I am sure that it will be oh so hard to pull Henry into the van on the 5th to return to Ann Arbor. Our family needs this time together and we hope that you all understand that Henry continues to be restricted with his activities and visitors.

While we are rejoicing, others are facing uncertain times. Our fellow 7 Motter, Abigail Morgan, (www.caringbridge.org/visit/abigailmorgan) will begin chemotherapy this week for the return of leukemic cells on her head. Pamela Collins from the New River Valley (www.carepages.com enter pamelacollins) has a serious bacterial infection and really needs our prayers for comfort for her and the family. Chance Harman from Floyd (www.samefight.org)is having complications from pressure in his head from a brain tumor. He and his family need our support as well.

I am thankful for all of God's blessings and I will not forget his benefits.

Believing, Angela

Sunday, June 24, 2007 9:10 PM CDT

Hope you enjoy the photos that I took yesterday.

Day 39 after transplant
Day 92 in Ann Arbor, Michigan

For all of you wondering…Henry decided that he would just keep his parents. This was after I explained that he would need to take his whole cart of medications with him to social services and that would scare any “prospective parents” away. He told me that he wasn’t going to be taking his medications with him and I quickly responded, “Well that ensures that they will be bringing you back about the time the next dose of valium is due.” He sat on his thoughts for a while and changed back to a sweet little boy just as quickly as things had gone awry. Poor Anna Kate may never want kids after this weekend!

What a great weekend. The weather here has been perfect. Nice cool breeze at night, no humidity during the day and no rain. Friday was clinic day and Anna Kate ventured there with us. I had a hair appointment on Friday afternoon that lasted 3 hours and I was only able to get my hair colored, not cut. Friday night, we went to Detroit to the first annual River Days. It was on the recently renovated riverfront and was a nice, outdoor activity for our Friday evening. Saturday, I found myself able to get a haircut-at another place-long story, but the girl who did it on Friday had to leave early because she became ill while doing my hair!!!! Can’t wait to get back to my girls at New Dimensions! Saturday evening, we ventured to nurse Kishta’s house for a cook-out/graduation party for her son and husband. Her son just graduated from high school and her husband just achieved his doctorate in pharmacy. Henry was able to shoot hoops on a “real goal” and really enjoyed meeting her family. Anna Kate and I enjoyed the ability to eat picnic style food-since neither of us has been to one in a while.

Today was a lazy day. We took Anna Kate to the airport and we came home and napped. Henry is still asleep. I started his IV fluids and they finished without him realizing it.
Our plans for the week are clinic on Tuesday, Mark and Michelle Schafer and their kids are stopping by on Wednesday and Laurie Buchwald is coming on Friday. He has another clinic visit on Friday.

We are both so ready to get back to Radford. Henry is doing so well. It is hard for me to imagine just how sick he was just 4 weeks ago. I thank God every day for his blessings to our family. Henry is a wonderful child and his brothers worship him. I can’t wait to get the family all together again.

Hope that you are enjoying your summer. We are going to bike together tomorrow.
Believing, Angela

Friday, June 22, 2007 5:46 PM CDT

Praise GOD! Henry's VNTR test (a blood test) results say that his marrow is now 100 PERCENT DONOR CELLS! I think this means that he is COMPLETELY engrafted with his new marrow. All of his own, deficient, marrow is gone!

He is doing really well, and we thank you for every prayer and good thought you have sent our way. It is still going to be a long two months in Michigan, but we can handle it. Angela and Henry, along with Anna Kate Ellerman, went on a short bike ride to Gavin's apartment last night. They are going to visit a river festival tonight. Henry is still having some difficult times with mood swings. He called a few minutes ago and asked for the number for Social Services...he wants new parents immediately. I gave him a fake toll-free number and told him to call after 9:00 am on Monday. In thirty minutes he will be fine again. Angela will write more soon. Thanks for the prayers and for BELIEVING!

Thursday, June 21, 2007 5:35 PM CDT

Henry has had more great days. He has tons of energy, he is enjoying being hooked up to the IV pole for only 2 hours each day and is now starting to ask frequently about the timing of our return home. I know that he feels great, and that makes me feel good.

I called the Make A Wish Foundation yesterday and started the paperwork for his wish. He first wanted to go to an LA Lakers game and has now decided that he wants to go to a taping of The Suite Life of Zach and Cody or Hannah Montana. He says that he is taking his girlfriend with him-she would call him while he was at Mott's and they both would be watching the Disney Channel so he wants her to go with him. It is in the beginning stages and I was told that there is a long list for those types of Wishes, so we will see.

I bought a bike so that we could bike together in the evenings. It doesn't get dark here until almost 10pm and the late evenings are best for any outdoor activities due to his skin GVHD. This town is has several biking trails that are novice-friendly and I will be able to get lots of use of a bike on the extended trail in Radford, so I was really excited about it.

Anna Kate made it safely and we are about to have dinner here at the apartment. We are going to take a spin on the bikes together after dinner and hopefully, no one will get injured!!!

Clinic is tomorrow morning. No labwork, just a shot, so I probably won't have anything major to report. I will try to post at least one day this weekend. I would like to ask each of you to pray for a fellow 7 Mott family. The Morgan's have a beautiful 1 year old daughter, Abbie, who had a transplant between Henry's tranpslants. Her leukemia cells have returned on her head and a bone marrow biopsy was performed today to see if it is there, too. Several of you have signed their guestbook already and I want to thank your for doing that. Julie was a huge support to me during Henry's second transplant. You may visit their website at www.caringbridge.org/visit/abigailmorgan to offer them words or just pray in your own way for strength for them as they await results.

Some news on Henry's brothers....Samuel lost his first tooth on Tuesday night- he pulled one on the bottom in the front and said "It didn't even hurt Dad!" Also, Harper woke Patrick at 6:15 am on Wednesday morning and said, "I need to go potty, Daddy" and he had a dry diaper. So, as much as we all probably don't realize it, Patrick has a full plate, too. He is working an extra job some nights and is being a wonderful Father to Samuel and Harper. He has been a huge help to me over the phone in dealing with Henry's challenging mood swings since our return to the apartment. He is a wonderful Father and Husband. Most relationships faulter when faced with our situation. We are lucky in that we have become closer and we thank God for that every day.

Thank you all for coming to my rescue by phone and email in this very lonely time. I feel better, especially with Anna Kate here.

Have a great weekend. Finally, Summer is here.
Angela

Tuesday, June 19, 2007 11:03 AM CDT

Today was clinic day. We had an 8am appointment for lab work, 9 am appointment for the doctor which was Dr. Choi since Dr. Levine is on vacation, 10am appointment for the Pentamadine breathing treatment and 11am appointment for his Enbrel shot. Whew...but they really shuffled us efficiently today and we were home by 1130am. We were even lucky enough to get our medications filled at the pharmacy in the Cancer Center while we were there.

Great news in clinic today...Henry is maintaining his weight without the IV nutrition, his rash is resolved and his new bone marrow is growing like a garden without requiring Miracle Gro(w)!

White Blood Count 5.1 (this is in normal range 4.5-13.5)
Hemoglobin 11.3 (almost to normal range of 12.5-16.0)
Platelets 63,000 (up from 41,000 last visit and this is without a transfusion!)
Okay and this is the greatest to report.....
Neutrophils 53.1 (this is normal range 39.0-75.0)
Absolute Neutrophil Count/ANC 2.7 (this is in normal range of 1.8-10.1)

His clinic visits are only once per week with the Friday clinic visit being for Enbrel shots only. The last Enbrel shot is July 17th. If you are thinking what I am thinking-keep praying that this will be the plan...I am too afraid to write it or say it...because I am afraid it won't happen...but August is looking like a reasonable time frame for our return home. "It is very likely" was the response from Dr. Choi today.

Henry's blood pressure is officially higher than his Father's blood pressure now. He was started on a second blood pressure medication to try to get it under control and if not, he will need to see the kidney specialist. Dr. Choi feels that the steroids and the IV fluids at night are probably causing the elevated readings. So, tonight, he gets a smaller bag of fluids with the magnesium (that he needs because the anti-rejection meds cause this to be low). He also had to start some medication because his phosphate was too low. This medication schedule is getting longer rather than shorter!

We were able to see Gavin(7 yrs old) in clinic today. His brother is now in the apartment with them and his father is visiting from Texas for the next 3 weeks. We saw Abbie(1 yr) sitting straight up in her stroller trying to wave at Henry and her belly looks like it is back to normal size. We saw Justin(15yr) who got the full run down on Henry's new Cabela's video hunting game and shares Henry's transplant date-he is doing great! We saw Ali(15yr) who was transplanted on May 10th and is doing great. We walked up to 7 Mott and saw Levi(2yr) who was transplanted before Henry and is looking great and hopefully going home soon. We just missed seeing Maddie(I wanted to adopt a girl after being around her). She is on a different clinic day than we are and we miss her so much. Great news to report on her is that her marrow tests for 100 days post transplant are completely clean-"no more kemia" she says! I will post their websites in case you want to leave any messages to these guys who are our support and family right now.
www.gavinbrunin.com
www.caringbridge.org/visit/abigailmorgan
www.carepages.com carepage name is thebears
www.carepages.com carepage name is aliaardema
levi does not have a page
www.caringbridge.org/visit/madelinethelen

I hope that you are all still following Pam Collins (from the New River Valley). She just had another bone marrow test yesterday. Her husband just moved into an apartment close to the hospital and I am going to try to get an address so that we can support them with cards and other things that they might need.

Thanks to all of you for your guestbook entries and personal emails of support today. We have been here 86 days and we are so lucky to have had all of you with us this entire journey.
Sincerely and with Gratitude for NORMAL NEUTROPHILS, Angela

Monday, June 18, 2007 10:14 PM CDT

Hello to all. Sorry for the late update. I actually hired a sitter (she is a tech on 7 Mott) today from 11am to 3pm to sit with Henry so that I could have some time to run some errands and complete the long “to do” list that I have.
Some exciting news for our family….our Tenth Street house is finally sold. The closing was today and as you can imagine, we feel like a ton of bricks has been lifted from our shoulders. Thanks to Beth Dalton and to Mike Johnston for your help with the closing. Thanks to all of the other realtors that worked so hard to get this house sold. It is a wonderful home, with wonderful neighbors all around, but we are so happy to be in our dream house on Harvey Street. (Well, I wish I was there!)
The weekend was exciting. The NASCAR race was at the Michigan International Speedway this past weekend. Ms. Lisa Hartsell and her friend Jill were in town to work the race for their clients. Ms. Lisa introduced Henry to Carl Edwards and to Greg Biffel last year at the April Talledega Race and has kept up with Henry’s website since she met him. She contacted me back in April to make sure that it would be okay for her to come to visit Henry while she was in Michigan. Of course, I wanted to meet her and Henry was very excited to see her again. Henry and I went to a late dinner with them Friday and Saturday night (taking major precautions to keep him away from germs). On Saturday night, she brought a signed photo of Carl Edwards with a special message to Henry. She asked Carl’s trailer driver (with the long beard) to get him to sign it and he did and then Carl won the race on Sunday. Poor Henry watched Carl Edwards in the winner’s circle and kept waiting for him to say that he won the race for Henry. He was so discouraged…it was so funny(and sad) to watch Henry….I finally told him that it was Father’s Day and that Carl had to say that he had won the race for his Dad. I have photos to post of Henry with Ms. Lisa and her friend (now our friend) Jill and I will get them up tomorrow.

Today was back to reality. I have to say that last week was a hard one. It was the first week alone and Henry had that major meltdown and I wondered if I was going to be able to make it. Well, I have been working with him and our teamwork is paying off. He has had a great week and I am very proud of him. We started back with school work today and we will carve out time in each week day to make sure that he is ready for second grade this fall. I am very proud of how well he is doing, although, I notice that it is very hard for him to realize what line on the page that he is reading and it is hard for him to hold his hand steady to write. All of this is related to the chemotherapy, and hopefully, will soon resolve. He is really sad that the pool is not an option right now and keeps asking about Pine Valley Pool and wondering what his friends are doing this summer. I finally called Erin (the sitter) yesterday when Henry kept telling me that I was boring and that he didn’t have any friends here in Michigan and that he was sad. I kept trying to get him to realize that I felt the same way….

I know that I should be so thankful and happy with his progress. He is doing remarkable. His rash is completely resolved. He is eating like a champ, drinking more, his color looks great, all of his scrapes heal like magic, and his mood is so much better. For all of this, I am thankful.
Please don’t hesitate to send e-mails. I try to respond to each one, in time, and look forward to reading them. Thank you all for your continued support. We have a long way to go, but will be home before we know it. Tomorrow is clinic day and I will update again tomorrow night. We are so excited that Anna Kate Ellerman will be visiting with us from Thursday through Sunday this week.
Believing, Angela

Friday, June 15, 2007 6:51 PM CDT

Today is Day 30!!!!

I can’t believe that a month has passed since his second transplant. 100 days will be passed before we know it. The rash is better today. It could be from the steroid taper or the fact that the level of his Tacrolimus/Prograf (the anti-rejection med) was a little low this week. Both meds have been adjusted and I bet he will be back to baseline by Monday.

Today’s blood counts were great. The white count was lower, but the platelets and the hemoglobin are engrafting very, very well. He hasn’t had a blood or platelet transfusion in 3 weeks or more and that is very uncommon after transplant. Liver and kidney panels are both in normal range-the window of high risk for liver problems has passed, but with that comes the window of high risk of PCP pneumonia. We are crossing the hurdles, though with your prayers.

WBC 3.0
Absolute Neutrophil Count 1800
Hemoglobin 9.9
Platelets 41,000

This is our first weekend without visitors. I know that Kathy Tucker is in town and we are going to try to hook up with her tomorrow.

Have a great weekend. It is supposed to be beautiful here.

Believing, Angela

Thursday, June 14, 2007 9:14 PM CDT

Day +29 after transplant

As soon as I can see the glow from city lights in Radford, I am quickly reminded that life after transplant is very fragile. Henry’s skin rash from the GVHD has been out of sight(in a good way) since about day +13 after the transplant so during his clinic visit Tuesday, Dr. Levine appropriately decided to begin the steroid taper. Long term use of steroids can wreak havoc on the body and suppress the immune system, so the goal is to use them only as long as you need them. Today, around 6:30 pm, I noticed Henry’s lower legs were bright red. I then took a closer look and noticed the rash on his legs all the way up to his thighs, bright red cheeks and a little on his back and arms. He has been inside all day so the sun (which usually causes a flare-up) is not the culprit. Oh, I forgot to mention in my list of duties that watching for any symptoms of the GVHD is probably my biggest job right now, especially with the taper. I just figured he would taper down without any problems and I am so bummed that this is not the case. Bummed but very blessed because the gut GVHD has not shown its ugly head. The physicians on-call responded quickly to my concerns and the steroid dose was resumed tonight and he will see Dr. Choi during clinic visit tomorrow.

As promised and way overdue is a list of the generous gifts that we have received. While writing up the list I thought, wow, we are loved. It was an overwhelming moment. I have to say that we are very grateful and thankful for all that you do from the cards, calls, emails, meals, the prayers, and the things that you are doing without our knowledge of it. Patrick and I both have given to many during our lives and we know that God is returning to us because of that. Because of your gifts and kindness to us during this time, we will always do what we can for others that we know are enduring similar circumstances. May God return your blessings, doubly.

First, I want to thank Dr. and Mrs. Don Yoder. Someone recently brought it to my attention that it was their idea to collect the donations and create the book of thoughts from the PCH staff for us. Thank you both-I have the book on the shelf in my kitchen at the apartment to remind me of ya’ll.

Thank you to the folks organizing the cleaning of the air ducts and HEPA filter at the new OLD house on Harvey Street. You know who you are and we love you dearly.

Henry has received many cards with one dollar bills, two dollar bills, and other denominations. Thanks to all of you for sending those. They help with the toys that he thinks that he still needs, stops to McDonald’s, the parking fees at the garage at the hospital, gasoline for my van, and groceries and the apartment needs . Thanks to all of you, we eventually will get notes to you this summer.

Gifts to me: I received a special bracelet from Angela, Faith/Hope/Love Cross from the Harvey’s on Madison Street(yes I thought of you Kleppin girls!), special visit from Tammy Weston, a special gift card from the Wimbish's, special visit from Erin Anderson her son Ben and her Mom, Mass prayer card from Suzie Goodykoontz, 2 boxes of Reese’s Snacks from the Roops, Relic of St. Francis Selos from Sue Learn, special card from Melissa Stump, a memorable visit from the Goldstein's, a sweet photo of Henry in a Day to Remember frame from Brad and Stephanie Harvey, a CD with special messages from the staff at PCH and a CD of the Miss Relay for Life Pageant (thanks Andy in IS) , prayer books, and a signed BELIEVE banner from the PCH staff and Relay for Life participants, special individual notes from Marlene Neal, Ellen Henley, and Eva Davis all of Pulaski, a very sweet I Believe star pin and Faith basket from Julie Akers, book “When God Winks” from Dale and Ann Stocking and Doug and Sarah Barhorst, and a medal and relic of St. John Neumann from Julia Wharton and the students and teachers at SJNA.

Henry has received: a cheese head hat/shirt/laughing cow from the Smarts, Believe/Earnhardt shirt and matching shorts, friendship necklaces/scrap booking supplies to share with transplant kids from Ms Wendy Bentley her daughter Casey and mother Judy, Ring Toss/deodorant/pedometer from Zack, Holt, & Anna Turk, art supplies/dinosaur book and grow capsules/crazy 8 cards from Jenny and Stephen Spedeliere, stickers from Katie the Cake Lady, marshmallow shooter/eyeball making kit/VT hoop &ball from Erin Anderson and Family, paper airplane making kit from special nurse Leigh, Pistons Build A Bear with a special recorded message from the Sydnors and the Davises, special CD and cards from his teacher Mrs. Patterson and his classmates, special artwork from Emma Sroufe, the four year olds at Gethsemane Baptist Church, and Nicholas Harvey, a special Target Card from Amy Spiker, a blood pressure cuff and toothettes for mouth care from Mr. Bill and Mrs. Shirley Armentrout, carved Santa from RU Santa via David Horton, Chicago PD hat & shirt from Mr. Joe and Ms. Pam Faulk, large box of Lay’s Potato Chips from the Roop Family, hunting video from Mr. Rambo, candy and a thick stack of cuffed singles to add to the stash from Mr. Jay and Mrs. Marian Williams, NASCAR race lamp and album from Florence Baker, GI Joes from Mrs. Tammy Weston, soccer ball ice cream maker with all of the ingredients included from Ken and Jayne Cox and their kids, silly string and Bubble for Henry and friends from the Goldstein’s, Magnetic Monsters from Jana Beckner, The Cranium Command outrageous fun book from Helen Wolfe, Atlanta Braves Monkey and dollar bills from the staff at Megs and Garrett’s, ATM savings bank for all of his stash of singles from Melissa Robertson, “A Perfect Pet” that looks identical to Sable-a stuffed cat that breathes(the nurses thought it was real) from Dale and Ann Stocking and Doug and Sarah Barhorst, special cards from Mrs. Rehak and Mrs. Schafer’s classes ,Homecoming 2007 Maroon Effect Hokies shirt from the Grahams on Meadow Ridge, an official NASCAR race program from the Dover Race and special invitation from Mr. Dennis Walkowiak of UAW-Ford, special cards at New London Academy-short story their librarian sat by Samuel on the airplane to Detroit during their last visit and she thought Samuel was a perfectly behaved 5 year old and gave him $5 dollars for his good behavior-she gave Henry a Canada umbrella hat and bear, Marvel activity book/All Aboard Science Reader/Animals Beyond your wildest imagination book from Julie Akers and her family, postcards from all over the world from a Mrs. Canon that I don’t recall that we know, 2 special books from Mark and Adam Johnston, stationary made with artwork from one of Henry’s projects with Mrs. Treva from the Joyce’s-whew I am sure that I must have missed something, and please forgive me if I did.

Patrick always tells me about his wonderful meals and I really appreciate your labor of love for him as well as the younger boys. I miss them so much right now. It is summer and we should all be together enjoying it. I just had to have that moment of pity. Sorry, I keep reminding myself that we could have it much worse…

What a long update! Promise to quickly update tomorrow after clinic visit.
Believing…Angela

Wednesday, June 13, 2007 9:07 PM CDT

Good evening. Thanks to all of you who visited Pam's website. I have known about her for about 3 weeks now and have been following her. I know how the comforting words and gestures from all of you really helped us during this journey and I felt like she and the rest of her family needed us.

Henry and I both were awakened at 6am this morning to a beeping IV pump. This home pump will beep if it detects an obstruction and Henry can usually roll or raise his arms over his head and it will stop beeping and start running again without me getting out of bed. (He is trained and does it in his sleep) When the pump kept beeping this morning, I got up to check it and realized that the bag was finished! Boy did I plan that wrong. I started his magnesium/fluids IV about the time that I usually start the program for the nutrition (which is stopped) Well, this program is shorter than the old program- I knew that, I just was in such a routine that I didn't plan the outcome very well. I waited until 9:30 to start it tonight, so that we can sleep until at least 8:30 without a beep! His medication schedule is very interesting. He takes 10 meds in the morning, 4 at noon, and we are down to 9 at night. I have to flush all four ports each day, change the dressings on his chest every 3 days, check his blood pressure several times during the day, check his blood sugar twice a day, change the tips on his ports every 6 days, change the tubing on his pump every 72 hours, charge the battery for his pump every day, thaw the bag of fluid for 3 to 4 hours before he gets it, remember all the appointments, and try to encourage a well rounded diet. All of that combined with the normal things you do as a parent of a very active 7 year old boy will keep you on your toes. I am not complaining as I take pride in my ability to keep it all straight. After all- WE ARE OUT OF THAT HOSPITAL!

The weather has been warm and beautiful here all week-90 degrees today. It is not as humid here as in Virginia. We ventured to the movie theatre for the 1:45 showing of Spiderman 3. There were 2 other adults in there with us because school is still in session here until Friday. I wiped the seat handles with Clorox wipes, took his own personal bottled water and chips and used the mask until we got to the seat. He loved it!

We then came home to cook for Kishta and Hannah. Both are nurses on 7 Mott and you know nurse Kishta is Henry's number one girl on 7 Mott. Kishta was on vacation in St. Croix when Henry was discharged, so she was amazed to see him today. We have made some great friends here-that unit is like our family and we truly have a special place in our hearts for the staff. I am bummed because I was so busy cooking and talking and I forgot to take a photo of them together today. She looks so beautiful and tan and refreshed. Henry talked all day about his dinner date tonight-boy do I already have fears of puberty at my house!

I have been unpacking and have to confess that my delay in listing the gifts was because I could not find my list. I found it today and will post again late tomorrow night. Henry has clinic visits again on Friday.

Hope you enjoy the new photos. Michael Parker-I have more individual photos of Poppy if you need them....

Love to all of you, Angela

Tuesday, June 12, 2007 9:47 PM CDT

The Believe magnets seem to be a hit. Thank you all so much for your feedback. I want to let everyone know that this is not a Mott-sponsored fundraiser, but an idea that hit me just yesterday. I received the magnet ribbons as a gift and immediately placed one on my van and thought, hey maybe you all would like one as well. I checked on the pricing and when you order 250, they are only $3.52, and if you order 500, the price drops to $3.30. So, I thought, we could sell them for $5.00 and send the proceeds to the hospital/unit that was like our family for 71 days. I have ordered 250 and it takes 2- 3 weeks to get them. I will need a contact person for them in Radford, at Pulaski Hospital, in Bay Minette, and I will give some to my Mom in Birmingham, AL and my Dad in Spanish Fort, AL. Oh yes, they are green because that is the universal color for transplants.

Thank you all for the guestbook entries. I find it hard to find things to write about on a daily basis, so I may not update the journal on a daily basis. I will try to tell you when signing off, when I plan to update again, so that you can plan for it. I take the web page very seriously and want to keep you all as up to date as possible and I promise to update in between times, if needed.

Today was clinic…blood draw in the lab, clinic visit with Dr. Levine, and no transfusions needed! Good news….Henry is doing great. He is still on a lot of oral medications and has a bag of IV fluids that includes magnesium for 10 hours at night. The IV nutrition has been stopped-YEAH!!!!! He is back to his old eating habits; yes…you know….chicken nuggets, fries, tater tots, hashbrowns, bacon, and LAYS potato chips. Popcorn is off-limits right now due to the GVHD of the gut. We were lucky to see Dr. Levine in clinic today…he thought Henry looked great and the boo-boo on his knee from the fall on the artificial turf on Saturday had healed-normally. The steroid taper is beginning (none too soon) and we will see how the GVHD responds to that. He is still getting the Enbrel shot twice weekly for the GVHD as well. Next week, he will start a breathing treatment called Pentamidine to prevent PCP pneumonia which he is at high risk for right now. I did not get a copy of his labs, but his WBC was 4.8 and platelets were 38,000. I did not get the hemoglobin or the neutrophil count, but they were fine too-no transfusions needed today. Other great news, Henry will not need a 30 day bone marrow biopsy, instead he will have an engraftment test called VNTR which is tested on the blood that they draw out of his chest port.

Today has been a challenging one. Henry is experiencing major mood swings and emotional outbursts that are very difficult to manage. They have been infrequent since he has been at the apartment, but he had a major one this afternoon. I hope that this is from the medication and that his transition back to Radford will help.

I am very thankful for the outcome of today’s visit. Henry has another visit on Friday and I will update after that. I plan to update again tomorrow night. I want to ask that you all visit another website of a lady in the NRV that had a bone marrow transplant around the same time as Henry’s first transplant. www.carepages.com and enter pamelacollins for the carepage name
Read through it and do what you all did to get Henry to this point. She and her family need us, and I feel the need to ask for your help.

With Gratitude and the knowledge that we have been blessed and we do not forget His benefits, Angela

Monday, June 11, 2007 2:03 PM CDT

What do you think about the magnet? Please let me know either in the guestbook or through email if you think that these magnets could sell for $5.00. If so, I can get them for $3.50 and we could donate the extra $1.50 to the Bone Marrow Transplant unit at the new Mott's Children's Hospital. Or, I could sell them for $3.50 each. I need some advice. Ms. Wendy Bentley designed these and had 5 shipped to me. I love them and of course, shared one with Gavin's Mom where Henry and I learned the motto "Believe". If we sold 250, then we could donate $375 to the new BMT unit. I am willing to order these and sell them in Alabama and Virginia, if you all want the magnets.

Henry has had a great two days. He gets tired easily. His foot muscles are very weak and he is a bit uncoordinated from the effects of the chemotherapy. I do feel that he will be able to work through it, though. His eyebrows have new little black hairs growing. I think this is a side effect of the tacrolimus/prograf for anti-rejection. It's cute, I just can't imagine what it will look like when they get thicker, and they will. Anyone who has followed Madeline Thelen can see that her hair is growing back in black-and she was blonde.

Poppy left today and Patrick leaves tomorrow and we will be sad-empty nesters. In reporting my special gifts, I failed to mention a special prayer box bracelet from Heather, magazines from Teresa, a special frame and cross from the Harvey's on Madison St., and a Believe cross from Misty.

I am compiling a list for Henry and I will get it on here by Wednesday. He has received such fun stuff and he is able to enjoy his gifts now that he is out of the hospital. They make every day a new adventure.

Thanks to all of the "regulars" for continuing to sign the guestbook. I almost feel like it is the week after Christmas and the excitement has waned. Hopefully, you all will continue to follow us all the way back to Radford and I BELIEVE we will be there sooner than we think!

With Love and Gratitude, Angela

Saturday, June 9, 2007 8:12 PM CDT

What a terrific day! Coach Carr's Car Wash raised over $100,000.00 dollars for the Mott's Children's Hospital today! All of the players knew Henry and were so happy to see him help out at the car wash. He got lots of autographs on his Michigan helmet. He sang the Michigan fight song, "Hail to the Victors" to Coach Carr and got several of really great photos. Doctors Levine, Yannick and Ferrara were all there and spent most of the morning with us. We met their families and Henry made great friends with Eli Levine. Angela bought Henry three "Super Soakers" to squirt today. He gave one to the football players and one to Eli. They had a wild time squirting the players, guests and even doctors! Henry spoke on three different radio stations during the car wash. He talked about his transplants and how wonderful the doctors and nurses are at Motts and how much the visits from the Michigan Athletes cheer up the transplant kids.

After washing cars, squirting doctors, football players and cheerleaders, Dr. Levine and Eli took Henry down on the field to kick field goals and run a touchdown. Henry tackled some of the players and ran a one hundred-yard touchdown with Dr. Levine "blocking" for him all of the way. He did a "celebration dance" after crossing the goal line. Dr. Levine and I were more exhausted than Henry! I couldn't believe Henry ran 100 yards! We thought that was enough "physical therapy" for today. We cannot say enough about how deeply appreciative we are of the doctors and nurses at Motts. They really care about Henry and he truly cares about them. We took lots of terrific pictures today, there are four new ones on this site and more on the Flickr site(and more being added tomorrow). Dr. Yannick's son was on crutches today and Henry is very worried. He wants to make him a card and put a dollar in the envelope!

Once we were home, we were all exhausted and took a nap. Then, Angela started the long process of preparing all of Henry's meds and IVs. This is a full-time job. He has a chart of 22 doses of medication each day. The medicines are a reminder of how fragile he still is. It is easy to forget he is sick when you see him play. He is really starting to eat--real food!

The other big news (Dr. Levine-stop reading now...)is that I brought Henry's "girl" for a visit. He is petting Sable right now. He really loves that cat. West End Animal Clinic and Dr. Emily Laurence have kept Sable while Henry has been in Michigan. They had a Hokie bandana around her neck and red "soft paws" on her claws. WEAC has been so good to us and our pets while Henry is away. You will love the sweet pictures of Henry and Sable.

It has been a long day, and we are ready for bed. We will write more tomorrow. Thanks for BELIEVING! Our prayers are being answered.

www.flickr.com/photos/henrymoore/

Thursday, June 7, 2007 5:17 PM CDT

Hope that you enjoyed all four of the new photos on this page. If you didn't see the cheesehead photo, you're missing a funny photo-refresh your browser to see them all. Thanks to the Smart's for such a fun hat. And by the way, he loves the Packers.

Clinic was interesting. We were late for our appointment because I had to wait for the IV nutrition cycle to finish-it is 14 hours long and I didn't start it until late yesterday due to the visit with the football team. Henry has learned all of the words to Hail to the Victors and can't wait to sing it with the players on Saturday.

Labs

WBC 4.4 down from 5.3
hemoglobin 10.3 up from 9.9
platelets 31000 up from 23000
not sure about absolute neutrophils-that takes a while to get the results and we didn't wait around...

Henry has lots of energy-you would never know he has had a transplant, except for the pale skin, mild rash, hair loss, and mood changes-from the steroids. He tried his bike today and had an accident and of course, it was MY FAULT.

Wonderful surprises today-Believe Ribbon car magnets from Wendy Bentley-Ms Judy's daughter and Sydney Covey's kindergarten teacher-and a Believe bracelet-it did not say who it was from-I also received a Believe pin from Lora Covey-
more fun things Henry has received..I am making a list to put on the website and my delay does not equal our thanks. I have been busy playing nurse, Mom, and catching up on rest.

Will have more photos from Saturday's Car Wash. Patrick arrives late tomorrow evening. I probably won't update tomorrow, unless it is eventful. We have officially hit 100,000 hits on the website. It had 15,000 hits in March when we arrived. Henry has touched many lives and I am so proud of him. I am proud of his brothers for being his heroes-he loves them dearly.

Believing, Angela

Wednesday, June 6, 2007 9:36 PM CDT

Go to the Flickr website for more new photos of Henry and the team and Coach Carr. www.flckr.com/photos/henrymoore/

Freedom feels great! His IV nutrition ran all night without beeping and we both slept all night without waking. We both were like new people today. We never even heard Tammy leave the apartment. Thanks Tammy for your help-I will never forget your support and encouragement.

We called Dr. Gehrz (his pediatrician) to confirm our independence and to let Henry tell him all about life during and after a bone marrow transplant. Poppy arrived around 2pm and Henry and I had just awakened from an afternoon nap-oops did I say that? We were very lazy today. We unpacked some of the loot and enjoyed the beautiful and cool day today. Henry has really enjoyed the ability to get fresh air when he wants it. He is eating and drinking more and has not had any complaints.

We arrived at Schembechler Hall around 4:45 and were able to meet some of the players before their team meeting. This hall is the football athletic center with the training room and coaches offices. It is very nice and new. Apparently, only the coaches and team are allowed in this amphitheater where they review game footage and have meetings but Dr. Ferrara and Dr. Levine were going to give them a talk about how the fundraising would benefit the hospital and asked Henry to come along. The team and Coach met first and the team cheered REALLY loud when Coach Carr entered the room. This made Henry a little nervous and he didn’t think that he wanted the room to be loud during his talk. Well, they cheered for Henry just as loud when he entered the room and he shook his head up and down acknowledging it like he was the president or coach I guess I should say. It was priceless. Dr. Levine talked about Henry being from Virginia and being a Tech fan and we learned that Coach Carr was with Coach Beamer last Sunday. Henry wore his autographed tech hat into the room with his Michigan football jersey-he had all bases covered-well I didn’t know a football analogy. Anyway, Henry made the team laugh when he surprised Dr. Levine and hit him up for his Michigan vs. Ohio State football tickets. He offered Dr. Levine his Tech vs. UVA tickets, but he wasn’t so sure that Henry’s set was as valuable as his set. Should have offered Alabama vs. Auburn-right? Anyway, Henry told them about missing his sports, friends, home, family and how sick he was. He showed them his central lines. He told them about his Make-A-Wish plans for an NBA Lakers vs. Mavericks game so that he can meet Dirk Norwinski.and Kobe Bryant all at the same time. Henry made them laugh and earned honorary membership on their 2007 team along with an authentic helmet to complete the uniform. They told Henry that he would need to learn their fight song-Hail to the Victors and sang it for him. It was a moving moment and Henry will never forget it-thank you Dr. Levine and Dr. Ferrara for asking Henry to do this.

The players will run a Radio-Thon all day for several days on several local radio stations. They will actually wash cars on Saturday and will raise about 300,000 for the new hospital. We hope that Henry made them even more eager to get out and work for the facility. It is an old facility with a wonderful medical team inside it. We looked past the cosmetics and we are so thankful that we did. I have video footage of today and if anyone knows how I can share it online, please feel free to email me.

We have clinic tomorrow morning. This is our first trip and I will update you on labs tomorrow.

Good night from Valley Ranch apartments -Angela

Tuesday, June 5, 2007 9:21 PM CDT

HENRY AND ANGELA ARE AT THE APARTMENT!!!!

1st LOOK AT PREVIOUS JOURNAL ENTRY FOR ANGELA'S ENTRY TODAY.

Henry, Angela and Tammy Weston finally made it to the apartment tonight. Today has been a very trying day for the three of them. They thought they would be released around noon today, and it was actually around 7:00 pm. The anxiety and stress were high today. It was both joyous and a little emotional. Living in the hospital for so long makes it a bit scary to know you will be on your own...even though you may spend hours every day at the hospital clinic. You form very close bonds with the staff and other families, and leaving is bittersweet. Henry will still have IVs and lots of medical care in the apartment...only now you cannot just push the nurse "call button". Thank heaven for Angela's medical background and for having Tammy Weston, who is a nurse, to be there for the first night.

All day today, I have felt like a proud new dad. It is strange, but I feel much like I did when the boys were born. Happy, thankful, proud and kind of giddy. I should have had cigars ready to hand out today! (or at least candy bars) I think Angela has that "new baby" feeling, too. You can't wait to leave the hospital, but you are really scared about taking them home and caring for them all on your own. In a way, Henry is like a newborn. This surely is a new lease on life for him, and a new chance for us to watch him grow up.

As the doctors have warned, Henry's health is still very fragile, and we have many dangerous unknowns ahead. But for now, we are living in the moment, and we are so very thankful for this new chance his donor has made possible. I say a prayer of thanks every day for Henry's donor, and try to picture him in my mind. If he is half of the man our family thinks he is, he must be awesome. I hope he can somehow feel our gratitude and overwhelming feeling of love for his unselfish gift...twice.

As I said, today has been both glorious and difficult. It as been an emotional time for both Henry and Angela. Henry is weaning off of steroids and pain meds, and this is a rollercoaster. Thankfully, Tammy is there to reason with Henry and is a strong and understanding shoulder for Angela to lean upon. Unfortunately, Tammy is going home tomorrow but Poppy gets there tomorrow. You probably know by now that Poppy is the NUMBER ONE person in Henry's life and I know they can't wait for Rick to get to Michigan. To see the love Henry and Poppy have for each other makes me both smile and a little jealous. If Henry had to choose, Angela and I know we rate a distant second to Poppy.

I am remiss for not thanking everyone for the great meals for the boys and me. Please know we are grateful, and that the food has been delicious. I have to thank everyone of you again for your encouragement, gifts and most of all prayers. Henry told us to BELIEVE. I know he does...through good times and bad. I hope his miracle has strenghtened your faith, as it has mine. Keep praying, sending good thoughts and BELIEVE. -Patrick

Tuesday, June 5, 2007 9:31 PM CDT

71 days and 2 transplants later....we are home-well at the apartment in Ann Arbor.

We do not have any appointments until Thursday. I am going to do a quick update tonight as I am very tired. I will post a photo tomorrow of his sweet and emotional exit from 7 Mott. He wore a Michigan shirt and an inflatable cheese head (a gift from the Smarts). He was sooooo happy.

All were sad at University of Michigan today due to the plane crash carrying an organ transplant team and the donated organ. There were media trucks everywhere and flags flying at half mast. A reminder to us all to be thankful for every little thing in our lives...

I have to say that today could not have happened without the help of Tammy Weston. She kept me from breaking down many different times. I must have been pulled in 10 different directions and the emotions are just too difficult to explain-but so very real.

We have much more to conquer and with a little uninterrupted rest, we will be ready for anything!

Believe, Angela

Monday, June 4, 2007 5:09 PM CDT

Sorry for the late update today.

Henry's labs were BETTER today.
WBC 4.7
Absolute Neutrophil Count 3000
That new marrow is working so great. Thank you, Thank you to the Donor.

Tammy and I have been busy packing up all of the "loot" in Henry's room. Did you catch that? We have been told that Henry is going home to the apartment tomorrow. That felt so wierd to type. Anything can happen, so it is not a done deal, but that is what we are planning for.

Henry was asked today by Dr. Ferrara to speak to the entire University of Michigan football team and Coach Carr on Wednesday night about what it is like having a bone marrow transplant. Since he has had TWO, he felt that Henry would have lots of information to tell them. The team does a fundraiser every year and this will sort of kick off a weekend of fundraising for the Bone Marrow Transplant unit. Henry is very excited. With some of his dollars, I purchased a Michigan football jersey for the event. Should be fun...I will have lots of photos to share.

Short update as we are still getting things organized to get out of here! I can just imagine sleeping without beeps and constant interruptions.

I may not get to update until late tomorrow, so bear with me. I will get an update posted by tomorrow night.

Believe, Angela

Sunday, June 3, 2007 6:59 PM CDT

I took Patrick, Samuel, and Harper back to the airport today and rested at the apartment while Tammy entertained Henry. They had a great day together, playing in the hallway, silly string fights, and EATING!! Yes, Henry has tried french fries, baked potato, and jello. He is also drinking ginger-ale and sprite and is able to take his oral medications without vomiting. This is a big deal. He has not eaten since April 13th! He is feeling so much better.

Counts today

WBC 4.2 (down from 5.0 yesterday)
Absolute Neutrophil Count 2400 (down from 3000 yesterday)
Hemoglobin 10.0 (down from 11.0 yesterday)
Platelets 28000 same as yesterday

He did not require any transfusions today. His counts are dropping but they are doing exactly what is expected now that his marrow is working without the stimulation of the Neupogen.

I want to again thank all of my co-workers at Pulaski Hospital. Your generous monetary donation will be so helpful to us as we are now staying in Ann Arbor about 2 months longer than we had originally planned. I have read the notebook of messages from you all and have been so touched by each one. I know that the book did not make it around to everyone and I want you all to know that I appreciate the cards, emails, and guestbook entries from you. I have always said that Pulaski Hospital is so much bigger than the walls that define it. You all are a very special group of people and I miss you more than you know. Thank you from the bottom of our hearts for the time that it took you to organize it and thanks to the Goldstein's for personally delivering it.

We have wonderful friends offering to do things in preparation for our arrival back home. We are so blessed and we do not take any of it for granted. We love you all and hope to return all of these kind gestures many times over.

Love, Angela

Saturday, June 2, 2007 7:24 PM CDT

First, the good news! The ".o WBC" should have been "5.0". Hopefully, not too many of you were alarmed. His counts are down a bit, but I think this is normal. Henry is having a great day. He has been NICE!! I arrived about 1:00 pm and was so happy to see Henry out of bed. He was very good to his little brothers, and even opened his "personal ATM" to give each brother two dollars! If you know Henry, this is HUGE. Janet and Stuart Goldstein came for a visit today. They are in Michigan visiting his sister. They brought enough Silly String and bubbles for the entire hall. Stuart shot Janet with the Silly String and Henry came to her rescue. He unloaded almost an entire can on Stuart. It was great fun. Stuart also brought a very generous gift of "preloaded" Master Cards from Pulaski Hospital. The PCC's organized it and also sent a notebook with very touching messages from many of Angela's co-workers. We will both read their messages many times. I am certain it is something Angela will keep forever. It would be hard to feel sad when you read these loving thoughts and prayers. Their very generous financial gift will be really helpful with all of the day-to-day expenses. It is hard to believe how just parking fees and meals add up. Thanks for your very generous gift.

Speaking of gifts, Angela tells me Henry has received many wonderful presents lately. She has spent most of this week with Harper and Sam, but wants you to know how much we appreciate everything you do, and she will thank you all soon. Mike and Mary Johnston gave a very special and thoughtful gift. They have donated a new bicycle and helmet for Henry's use while he is in Michigan. We will leave it at the hospital when we return to Virginia, and other transplant kids enjoy it for years to come. Right now, the children's unit only has tricycles and Big Wheels. While can Henry ride these, he is really too big and gets embarrassed if anyone sees him. The bike is not only fun, they are great exercise and physical therapy.

Gran left today and the kids are sad. She is sad now, too. She is spending the night at the Philly airport thanks to a thunderstorm delay. Tammy Weston arrived just as Gran left. Henry was excited to see her. Tammy's daughter Jillian was one of Henry's first baby sitters, and has always been one of his "girlfriends". Tammy's husband, Jim, delivered Henry, Samuel and Harper, and he is responsible for helping us be able to have all three boys. He has also offered so much help trying to find a match for Henry, and lots of encouragement and advice along the way.

Angela, Tammy and the boys went to the apartment for the evening. Samuel, Harper and I have to leave for the airport bright and early tomorrow. Hopefully, I can come back next weekend to go to "Coach Carr's Carwash" with Henry at the Univeristy of Michigan Football Stadium. I really hope he will be in the apartment by this weekend. Cross your fingers and toes.

Gavin left the hospital today!!! It is strange how we are both happy and sad. We are so thankful he is getting better, but we already miss Mashawn and Gavin. They are in the same apartment complex as Henry, so hopefully, we will see them often. They are both amazing. Gavin has been in the hospital for about four months, and the nurses already miss him, too.

I want to thank each of you again for your caring thoughts, prayers and for believing. He IS getting better! As I type this, Henry is giving me "Life Lessons" and just said, "You know, you can have some bad days, but it always gets better. No matter how sad you are, or how bad you feel, God still love you....That's just how it works. Some times you don't realize it. God just loves you." Wow. This was from out of the blue.

SILLY STRING UPDATE (9:35 PM) Alan, the volunteer just had a two-can silly string battle with Henry. The battle lasted 60 seconds, and it took 10 minutes to clean up. It was fun!

Saturday, June 2, 2007 9:00 AM CDT

Counts are

WBC .0
Absolute Neutrophil Count 3,000
Platelets 28000
Hemoglobin 11.0

Neutrophils and decreased the most. We'll see what Dr. Ferrara says when he makes his rounds today. All of this is expected now that he is off of the Neupogen.

I will update again tonight. I am going to the airport to get Patrick!

Angela

Friday, June 1, 2007 9:39 AM CDT

The counts are here!

WBC 5.4
Absolute Neutrophil Count (ANC) 4300
Platelets 30000
Hemoglobin 10.8

Normal Ranges

WBC 4.5-13.5
Absolute Neutrophil Count (ANC) 1800-10100
Platelets 150000-450000
Hemoglobin 12.5-16.0

They stayed about the same. That was expected because the Neupogen was stopped and he did not receive a dose yesterday. After a transplant, everyone uses Neupogen to stimulate the new marrow until it gets engrafted. Then they stop it and let the new marrow work without help. I get a little anxious thinking about this transition, sort of like changing to auto-pilot while flying.

Henry feels pretty good today. The GVHD is under control with the Enbrel and they are tapering him off of the steroids. His gut seems to have calmed and we'll see how he does with clear liquids. The pain pump is being tapered down as well. It seems like his biggest hurdle is going to be GVHD of the gut. The fire has been "put out" but the embers are still burning. With GVHD, the embers may burn for a long while, and finally die out. Different things throughout your life may stir it up again, so in reality, once you have it, it is always there. Even sun exposture can bring it back on the skin. I am learning new things every day.

The BMT team here is great. We are so lucky to be here and to have the prayers and kind thoughts and wishes offered by all of you.

I will not add another entry this evening. Patrick and Tammy Weston arrive tomorrow. Mom leaves tomorrow and Patrick, Samuel and Harper leave on Sunday.

Have a great weekend. Believing....Angela

Thursday, May 31, 2007 9:48 AM CDT

Today's counts are here! I am reading them from the print out...Are you all set? (That is how they say it here in Michigan-it is too funny to me)

WBC 5.6
Absolute Neutrophil Count 4000!!!!Never has been half of that number and now he is in normal range
Platelets 31000 he made his own
Hemoglobin 10.7 he made his own

Normal ranges:

WBC 4.5-13.5
Absolute Neutrophil Count (ANC) 1800-10100
Platelets 150000-450000 we have a long way to go here-but they are the last to fully engraft
Hemoglobin 12.5-16.0 for a child-so he is getting there

His new marrow is working great. Thank you, Thank you Donor. Henry is pretty grumpy again today. The steroids are a double-edged sword.

His immune system is still weaker than a newborn infant, hence the "new birthday" for the transplant day. The stem cells donated by the donor are baby cells that have not been exposed to viruses and did not give Henry any of his immunity to anything. Henry will need to get his vaccinations all over again and that will start in about a year. He is restricted to groups of 5 or fewer HEALTHY people. He will be on a very special diet, non perishable type foods and also consisting of foods that won't upset the GVHD of the gut. We have to remove the carpet from his room and replace with antimicrobial flooring. We have to get the ductwork in our home completely cleaned and a hepa filter placed on the central air. He will not be able to swim until both of his central lines in his chest have been removed and surgery sites are healed. So, our lives are completely changed for a while-maybe a year.

But, Henry is free of Kostmann's-he did not convert to leukemia, he is surviving 2 bone marrow transplants that were performed in about a 5 1/2 week time frame, and for that we are so thankful.

Several packages have arrived and I will post the list sometime soon.

I Believe...Angela

Wednesday, May 30, 2007 5:42 PM CDT

I am not sure what has happened, but Henry is a different boy this afternoon. He is laughing, smiling, talking to people on the phone, and very pleasant! Whatever it is, I WANT SOME OF IT!!!

Dr. Ferrara stopped by again this afternoon. HENRY HAS OFFICIALLY ENGRAFTED!!!! He is doing well. Chest X-Ray is clear, no more fever. The GVHD rash is only on 3 percent of his body and his diarrhea has greatly improved. Dr. Ferrara is pleased with Henry's response to the medication for the GVHD and is going to begin to taper him from the steroids. He will continue the Enbrel shots twice weekly for 8 weeks. So, he will still be getting some shots.

He is not able to eat yet. He is on sips of water and hopefully can progress to clear liquids soon. He is taking most of his medications by mouth and is able to keep them down.

We are working our way out of here. He does need to stay in the hospital for at least 8-10 days after the GVHD is diagnosed, so we will see.

Some fun news...We received free passes today to attend the major fundraiser for the Bone Marrow Transplant Unit here. It is called Coach Carr's Car Wash. The Michigan football team and the coach wash cars for several hours in a drive-thru type fashion at the Michigan Stadium. We have tickets for the breakfast with the team prior to the car wash. Henry's goal on the day of his admission was to be able to kick a football through the field goal on the field of the Michigan Stadium. That will be his day to prove that he can do it. It is on June 9th, so we have a plan in place to get him stronger. We are very excited about this event!

Okay, I have been asked by lots of folks about the name "Mella." Thanks to this journal and all my girlfriends from good 'ole Alabama, I will not be able to keep all of my secrets in the basket. I will let them all explain the name, each in their own version, in their guestbook entries. It will be fun to read, even for me. I am so happy to be reunited with them. I come from a great town, just like Radford! I miss it more than I realize sometimes. You guys have been great and I appreciate your entries.

Thanking God for a great afternoon with the old Henry, Angela

Wednesday, May 30, 2007 9:28 AM CDT

White count today 2.3 apparently yesterday it was 2.8 and we were told the wrong verbal information. It is best to get a print out of the lab results and believe me, we will go by that from now on.
Absolute neutrophil count down to 1200 today
He is maintaining hemoglobin and platelets and did not require a transfusion today.

Henry has started running an elevated temp at 101.7F. His has developed a cough.

As you can tell, we have a long way to go. I will try to update late tonight as to how the day goes.

Believing that this is all going to work out, Angela

Tuesday, May 29, 2007 9:59 AM CDT

White count today was 2.3
Absolute neutrophil count 1600

It is slowly increasing and that is great. He did not need blood or platelets today, so they are slowly increasing too. If the absolute neutrophil count is over 500 tomorrow, he is officially engrafted. The day of engraftment, reverts back to the first day it was over 500, which was my birthday-so neat!

We are sure that this cannot be his old marrow. I am not sure that he ever had an absolute neutrophil count of 1600-maybe if his white count reached 10.0 or 11.0 he did, but his old marrow never made this many neutrophils at such a low white blood count. I just know that his 30 day bone marrow biopsy is going to show 100% donor cells!

He is feeling better. Rash is almost gone. Still on pain meds, anti-rejection meds, anti-fungal meds, liquid nutrition, antibiotics-all around the clock.

Believing, Angela

Monday, May 28, 2007 10:40 AM CDT

I am going to leave the new photos on the website only for a few days. I want to post the last one of him again, because it is the first glimpse of the old Henry that I have seen since his hospitalization. I want to thank all of you for your birthday wishes. We had breakfast together and Patrick spent the day with Henry at the hospital. Mom, Samuel, Harper and I joined them later this afternoon and the boys were able to visit with each other. I told Henry last week that all I wanted for my birthday was to see him walk in the hallway-and he did it! He has not actually walked in a long time. He has been riding on the big wheel because he says that his legs hurt when he walks. Henry was sad to see us leave and said, ¡§You can¡¦t leave with me here in this hospital.¡¨ It made me cry, but Mom was there with him to play games and read. We had dinner at Zingerman¡¦s, outside in the 83 degree sunshine here. It was a great day.

As you can tell from the photos taken today, Henry is weak. He is in the process of engraftment, but he has graft versus host disease (GVHD). I can¡¦t tell you in enough words how serious this can be. I can tell you that for sure, we will be here for the 100 days post transplant, as he will need to be monitored closely. This disease waxes and wanes in its intensity. There is a chance that he may never be weaned from his anti-rejection medication, due to the GVHD. Luckily, this is the main expertise of this BMT team and we are in great care. If you ¡§google graft versus host disease¡¨ you will see Dr. Ferrara¡¦s name pop up first. Henry has a long way to go and will need your prayers now more than ever. In Dr. Ferrara¡¦s words, ¡§Where there¡¦s a graft, there is hope!¡¨

I am going to paste Father Patrick¡¦s homily into the journal entry tonight. You will laugh and cry. I will do a late morning entry tomorrow after the full white blood count is completed and Dr. Ferrara has seen Henry.

Believing, Angela

Here is his homily from Pentecost Sunday:

It happened in Galveston, TX. A woman was cleaning the bottom of the cage of her parakeet, Chippie with the canister vacuum cleaner. She was not using an attachment on the tube. When the telephone rang, she turned her head to pick it up, continuing to vacuum the cage as she said "Hello" into the phone. Then she heard the horrible noise of Chippie being sucked into the vacuum. Immediately, she put down the phone, ripped open the vacuum bag, and found Chippie in there, stunned, but still alive. Since the bird was covered with dust and dirt, she grabbed it, ran it into the bathroom, turned on the faucet, and held the bird under the water to clean it off. When she finished that, she saw the hair dryer on the bathroom sink. She turned it on and held the bird in front of the blast of hot air to dry him off. A few weeks later, a reporter from the newspaper that originally published the story went out to the house to ask the woman, "How's Chippie doing now?" She said, He just sort of sits and stares." Today's gospel tells us that it was what happened to the apostles. They all were traumatized by the arrest and crucifixion of their master and bewildered by his post-resurrection appearances and his command to prepare for the coming of his Holy Spirit. Then came Pentecost and nothing could keep them from singing about Jesus Christ.

It is important to point out that Pentecost was not about the birth of the Holy Spirit, for it existed eternally with the Father and the Son. Nor was this the first celebration of the feast of Pentecost, for it evolved through the ages. Pentecost literally means fifty. The first Pentecost celebrated occurred fifty days after the Hebrew¡¦s escape from slavery ¡V it would be equivalent to our Thanksgiving, as the first fruits of the first harvest (which came fifty days after their escape) were offered back to God.

Pentecost was also a celebration of the Covenant God made with Noah; fifty days after the flood (remember the dove?). Another form of celebration occurred fifty days after the Passover, where God presented Moses with the 10 Commandments on Mt. Sinai. (Remember, the mountain was surrounded by rings of fire, a sign of the Holy Spirit.) And in its final form, the one we celebrate today: the fifty days following the resurrection.

I should also point out that Pentecost was not necessarily a feast commemorating the birth of the Church, for the Church came into existence when the blood and water flowed from the side of Christ fertilizing the ground and giving rise to the Church in the resurrection. Pentecost is really a feast about the Church going public, as the disciples bolted from the room and went out into the world. Any conversion impels us not to hide our faith, but to go public with it. I was ordained, to go public with my private faith, because I believe in the resurrection, I believe in Jesus Christ and this impels me to preach week after week that Jesus Christ is real, Jesus Christ is alive!

Pentecost is not a one time event, but an event that is eternal, reaching out with the rays of the Holy Spirit to every generation, to all people everywhere raising up the Church.

The Holy Spirit provided the disciples, myself and countless others with courage to do so. Here is and example of the courage I speak of: A man died and went to The Judgment. St. Peter met him at the Gates of Heaven and said, "Before you meet with God, I thought I should tell you -- we've looked at your life, and you really didn't do anything particularly good or bad. We're not at all sure what to do with you. Can you tell us anything you did that can help us make a decision?"

The newly arrived soul thought for a moment and replied, "Yeah, once I was driving along and came upon a woman who was being harassed by a group of bikers. So I pulled over, got out my tire iron, and went up to the leader of the bikers. He was a big, muscular, hairy guy with tattoos all over his body and a ring pierced through his nose. Well, I tore the nose ring out of his nose, and told him he and his gang had better stop bothering the woman or they would have to deal with me!" I¡¦m impressed, St. Peter responded. ¡§When did this happen?¡¨ ¡§About two minutes ago,¡¨ came the reply.

Yes, there is laughter here! That is Pentecost that is the Holy Spirit! We rejoice in laughter, for we now know no matter how bad life may become, Jesus Christ will always have the final word! When we begin to sing with our hearts, when we can laugh aloud, we know we are in the presence of the Holy Spirit, there is Church.

Pentecost is about the raising up of the Church. Sometimes when we think of Church, we think of hierarchy, the Pope and all the rest. That would be true, but not the whole truth.

What I experienced in Michiganƒx last week, for example, was another dimension of Pentecost lifting up the Church.

1. For example, each week, athletes from Michigan University come to visit the children in the hospital, just to be with them. You see, there is also the Church.

2. Pentecost is an event that breaks down barriers, for no matter what the nationality, the Book of Acts tells us that the disciples spoke a language that all understood and this language was the love of Christ Jesus.
*Kris Krammer, an Episcopalian priest, accompanied me to be with Henry. We were later joined with Anna Kate, a minister of yet another faith. Around the bed of Henry, we joined hands and prayed as one faith, one language: the language of love. That is the Church, speaking one language.
*Last week, after one of the baptisms, I joined the family for pictures. I was introduced to some friends of the family who were not Catholic. There was Pentecost as well, for one of them said, ¡§We are of different faiths, but we serve one God.¡¨ ¡§So true,¡¨ I said. I then added, as my humor got the best of me: ¡§However, you will still need a Catholic Id card to get into heaven.¡¨ We all laughed in the joy of the Holy Spirit, as one Church, one Faith.

3. I think of the Knights of Columbus guy in Michigan, a total stranger, who agreed to pick Fr. Kris and me from the airport, which was 45 minutes from the hospital. Not only that, we found out we had different flights out of Michigan. ¡§No problem,¡¨ he said. He came for Kris at 5:30 a.m. and then returned for me at 8:30 a.m. That is Church.

4. I think of all who organized my trip, paid for my trip, and inspired my trip. I think of the Rehaks and the Moors who, as we all know, once vied for the same political office. Well, all this was put aside as the Rehaks are taking care of the Moore pets (so Patrick could visit his son) and it was Ann Rehak who asked me to visit Henry. That is Church. That is the power of Pentecost, continuing to unlock doors & makes all things possible.

5. Fr. Kris and I arrived just one hour before the transplant and we all laid hands on the marrow and blessed it. Fifteen minutes before the transplant, a cake from Karen Deluca arrived in priority mail. We all partook of it following the transplant. The timing of that cake was the work of the Holy Spirit, Pentecost, forever reaching outward through time providing a sign of comfort.

6. And finally, I think of Henry. As we prayed for him, he rose out of bed and said, ¡§No tears!¡¨ He was saying in essence, ¡§No surrender, no fear!¡¨ That is courage of Pentecost.

I think of Henry as Fr Kris and I had our picture taken with him while wearing rather irreverent wigs. After we finished with him, Henry said with humor, ¡§Okay, now get a shot of just these two freaks.¡¨ That is the joy of Pentecost, even amidst great suffering.

I think of Henry who told his classmates ¡§Tell the kids I am coming home soon. It might be a few days, but I am coming.¡¨

I think of Henry when I told him, ¡§I love you, Henry.¡¨ And he replied, ¡§I love you, too. You are in my prayers.¡¨ That is Henry, that his my hero. There, in that hospital is Church, alive with hope in the motto: ¡§Believe.¡¨ And that is truly the essence of Pentecost. Believe.

Monday, May 28, 2007 10:40 AM CDT

All you BELIEVERS REJOICE! Your prayers are being answered!! We still have a long and difficult road ahead, but things are looking up. Henry has an ANC (absolute neutrophil count) of 800! It doubled from yesterday. He has a total white count of 1.3 !!! He IS getting better. He still has lots of pain and vomiting, but this is part of the process, and we will get through these ups and downs. The doctor warns that he is not out of the woods, but we are headed in the right direction. He is on a tremendous dose of steroids, which can torment the most gentle of souls, so you can imagine Henry today. The doctor also told us to give Henry "some slack" because he is going to be difficult to console or control. Some how, just knowing this is "normal" makes it easier to accept.

On the subject of BELIEVING, I want you to know how much my faith has grown through this. We have had dark days, with no promise of a tomorrow, but our faith helped us realize that all of us are in God's hands, control and on His time table. I used to pray for Henry to be saved. Then I realized Henry is is already SAVED because of Jesus' sacrifice for all of us. Now I pray that, if it is God's Will, Henry be cured. I always knew that there was a plan for Henry, but waiting for God's timing is the hardest. I appreciate so many of you willing to share your faith in the journal, and willing to pray in our stead when we didn't have the energy or ability to pray ourselves. I know there are people who somehow let their faith or prayers slip away, but have recently felt God's spirit and have been moved to pray to support Henry. For this, everything we (the Moores) have been through is worth it! I knew God had a plan for Henry, as well as for all of us. I thought that plan was to increase participation on the Marrow Donor Registry. Who knew that Henry would also cause people to re-examine and renew their faith and prayers. Thank you everyone.

Father Patrick gave a wonderful sermon for Penticost Sunday and included observations about his visit with Henry. It was terrific, and I think Angela will try to add a link to the sermon if you wish to read it. Also Father Kris sent Sea World a letter and link to Henry's website. He was wearing a "BELIEVE" T-shirt from SeaWorld on his transplant day. They sent a huge box of Shamu and BELIEVE things from SeaWorld along with a handwritten note to Henry and a promise of a "red carpet" day at SeaWorld for Henry and Father Kris when Henry is able. Look for pictures with the BELIEVE stuff soon!

Today is Angela's birthday, and she is spending most of it with Samuel and Harper. Gran spent the night here so Angela, the boys and I could spend time together. I get "Dad" time with Henry today, and will cherish our day together--steroids and all! (sorry for misspelled words. I still can't use spell check on the updates.) Keep praying, sending good thoughts and BELIEVING!!!

Sunday, May 27, 2007 6:47 AM CDT

Psalm 27:13 "Wait for the LORD; be strong and take heart and wait for the LORD."

Henry's white count was 0.9 this morning. This is the highest it has been in 2 months. Engraftment is on the way.

MORE INFO AS OF NOON TODAY:
They counted 59 neutrophils and the lymphocytes (that caused the last rejection) were in the normal range. There were 10 bands which means that they are about to become neutrophils. He had to receive blood today, the hemoglobin will rise slowly and the platelets will be the last to engraft. Speaking of engraftment, this will be deemed when his absolute neutrophil count is above 500, 3 days in a row. Today it was 400. We are on our way to engraftment.
Now for the not so good news. His rash is worse today, still with vomiting and diarrhea. His GVHD is still at stage II and the hope is to keep it from getting to stage III or IV. The steroids are going to be increased and hopefully, the GVHD will not attack the liver or any other organs.
Despite the great news, Henry still feels terrible. I feel so bad for him and the high doses of steroids are not going to make it any better.

Thank you God for answering our prayers, Angela

Saturday, May 26, 2007 11:10 AM CDT

White count has slightly increased to 0.3 today.

Henry developed a mysterious rash yesterday afternoon-ears, hands, feet, trunk and itchy. It was more apparent after the CT scan, so the PA thought it was a reaction to the contrast dye. I was not convinced of that and recruited all of my "Mom nurses" into the room to look at the rash. We all agreed that it was a GVHD rash. I anxiously awaited the lab results this morning and thought if the white count was up, in fact it must be the new bone marrow at work. Luckily, Dr. Ferrara is one of the world's experts on GVHD and was able to look at it and confirm immediately that in fact, Henry has GVHD of the skin. He believes that he also has GVHD of the gut, hence the almost constant vomiting and diarrhea. GVHD is in stages of I to IV and Henry is at stage II. Henry was accepted into the Enbrel study during the first transplant and it prevented this in the first transplant, but we are no longer in that study due to the first graft failure. However, one of the new protocols being developed by this BMT team for treatment of acute GVHD is Enbrel, so Henry is going to get Enbrel and a low dose of steroid(Solumedrol), and hopefully, tomorrow, this itchy rash and terrible stomach pain and GI upset will be gone!

I was so happy to see his white count up today. I want to be content and let God do His work, but I can't help but to feel some relief that this one is on the way to engraftment!

Believing, Angela

Friday, May 25, 2007 5:08 PM CDT

I am thankful that the CT scan and ultrasound showed that Henry’s gallbladder and gut were both better today than 3 weeks ago. He has been in so much pain, and there is really no explanation for it. Right now, he is sleeping and appears to be comfortable. I hope that you enjoy the new photos. I also added some to the Flickr website. The link is below.

Henry’s white count held today at 0.2 today. His temp was up to 103.3 last night. So far, the blood cultures have not shown an infection. He did get a bag of platelets this morning.

I do want to confess that my anxiety level has increased exponentially over the last 2 days. To be totally honest, I am so afraid that he will not engraft. Writing in this journal each day allows me to keep impressing the phrase “Believe” in my mind. When I type each word into the journal entry, it is as if I am talking to myself, trying to convince myself to be calm and to believe. I spoke with another Mom today and I asked, “How do you appear to be without anxiety?” She said that she spends each day speaking the “truth” to herself and that in reality; all of this is in His control. Thank you, Julie. Thank you Gary for your reassurance in the quote, “If you are going to pray, why worry? If you are going to worry, why pray?” I also want to thank Father Kris for the 3 verses that he left in the guestbook-they were just what I needed to hear today.

My Mom arrives tomorrow and Patrick, Samuel, and Harper will arrive on Sunday. Patrick with leave them here with me for the week and will return next Saturday to get them, when my Mom leaves and Tammy Weston arrives to help out. As you can imagine, I am so excited to spend the week with the other boys. I am looking forward to having Tammy here as she is a great friend, nurse, and Mother to her five children.

Thank you all for intervening for Henry today. Please, pray for him. He is so tired of being in this room, tired of the pain, tired of the vomiting, tired of being bothered by all of the vital signs, meds, shots….He is miserable and his thoughts and words show it. He is a wonderful special child, and I desperately want to see his real smile and personality to return.

Believing that the cells are growing…..Angela

Friday, May 25, 2007 2:20 PM CDT

REJOICE!!! Henry's CT Scan results just came back and his gall bladder and "gut" look good. Angela said, "Actually better than his previous scan." Whew! Another day on the roller coaster.

More great news. Gavin is outside right now...totally unhooked. NO IV's, NO PAIN PUMP...NOTHING! He is free from all of that at least for a little while. Thanks for your prayers. They are working! Keep praying and BELIEVING.

Friday, May 25, 2007 12:27 AM CDT

I am not updating to alarm you all, but to inform you of the latest information and to ask you to pray...

Henry's vomiting has worsened and the Gastroenterologists were consulted. They suspect a gallbladder obstruction. If so, Henry may need surgery as bile hanging out in the gallbladder could cause an infection. A major infection could cause the transplant to fail, again.

He had an ultrasound of the gallbladder, pancreas, and liver around 11am. He will have a CT scan of abdomen at 2pm.

I am asking that you direct your prayers specifically for these recent changes.

Thank you, don't panic, BELIEVE....

Angela

Thursday, May 24, 2007 8:29 PM CDT

Henry has been out of bed once today to ride his big wheel down the hallway. He thought that he might want to go outside, but his tummy was hurting too bad. He has had nausea, vomiting, and diarrhea all day. His mouth is sore and painful and his stomach cramps terribly, making him scream really loud. It breaks my heart to watch, but I have to know that he has to be this sick to allow the new cells to engraft. He had an elevated temp. today...somewhere around 101 or 102...this is expected with the transplant, but they did take blood to test for any infection. Dr. Ferrara said that he is confident that Henry will engraft and that he is moving along just like a transplant patient should.

We were surprised today by some Radfordites (I can't remember-is that what Catherine Vannoy decided was the proper term? help me out please.) Erin Anderson, her son Ben and her mother stopped by on their way to northern Michigan. I stepped out for about an hour to have lunch with them at Angelo's-a great little place with delicious homemade bread. It was so great to see familiar faces, although my hospital friends are special familiar faces, too.

Here is an update on our fellow 7 Motters-
Gavin is exercising every day. He looks great and is making his path out of this place soon. Little 2 year old Madeline has moved back home about 3 hours away and is doing great. Ali, whose bone marrow transplant was May 10th (the Fr.'s may remember reading her poster with the verse from Jeremiah), is leaving tomorrow for her apartment and outpatient clinic visits-she has made amazing progress. Abigail,who had her transplant 3 days after turning 1 and was in the PICU only 2 weeks ago, is going home over the weekend-they just live an hour away. Justin, who had his transplant (donated by his sister)on the same day as Henry, is feeling about the same as Henry. Terrible mouth sores, pain, but is motivated to get out of here. His motto is Git-R-Done and we love that! Say prayers for these 3 boys that they all can get out of here and enjoy this beautiful summer weather.

Believing that engraftment is on the way....Angela

Wednesday, May 23, 2007 6:16 PM CDT

Dr. Ferrara came in today and said that if he came in and didn't say anything, that it was a good sign. He didn't say anything today except that he hoped things could keep going just like they are now, for the next 5 days. Dr. Ferrara is the head of the BMT program here and is considered by his peers as an expert in graft versus host disease.

WBC 0.2 today
He received platelets this morning.

Some good things to report...Henry went outside in the courtyard with Uncle Jason for about 2 hours today. Gavin and his Mom were outside to make it more exciting. Henry shot many people that passed by with his Nerf gun. Luckily, they all laughed and thought it was funny. He still has nausea and vomiting. The pain pump is infusing slowly for 24 hours and that has helped his activity level increase.

Great day today-Believing good things are on the way...
Angela

ATTENTION:
Henry has received blood products almost every other day and now I realize that the bone marrow transplants cannot be successful without the support of these transfusions. I have to confess that I have never donated, but plan to begin as soon as my life gets back to normal. I am asking that each of you consider donating blood during the American Red Cross Blood Drive on May 31st at Radford University. It will be in the Heth Ballroom from 9am to 1pm. You can make an appointment in advance online or by calling the local number in Radford. Their goal is to get 25 units. Please, consider donating in honor of Henry. Platelets are a hot commodity around here. They are so important to this whole process with most patients getting 2 and 3 bags each day. You can Google for a location near you, but for the New River Valley folks, it looks like you can donate in Blacksburg...here is the link to what I found...
http://www.redcross.org.vt.edu/events.htm Thank you-The Moore Family

Tuesday, May 22, 2007 8:03 PM CDT

Good evening to all. I hope that you enjoy all four new photos. Patrick is being treated to another wonderful dinner with the Goldsteins-hey ya’ll! My sister, Jennifer, and I ordered take-away from Outback to enjoy here at the apartment. Henry has had a great day despite the need for platelets this morning, slightly elevated blood sugar and blood pressure, and bone and leg pain. He played out in the hallway and drank some Sprite. Yes, we are celebrating sips right now. Uncle Jason has been an awesome caregiver! Auntie Jen has been great help and support to me, too.

So, early this morning, we thought his counts were rising. We didn’t know whether to be happy or not, but we thought, let’s run with the good news. We soon were told that the misinformation was passed “verbally” and that the written lab report stated the WBC as 0.1. His WBC has been at 0.1 since I last reported it at the end of April. In fact, it hasn’t been higher than the 0.7 that we were so happy about back at the end of April. Henry is receiving excellent care here and the nurse felt horrible about giving the wrong information. No harm, because we weren’t really expecting the counts to rise for another week.

As promised, I want to list all of the presents that Henry has received. The mail people at the apartment and at the hospital already know us very well. The mail lady at the hospital has started writing us little notes like “God bless your family.” Patrick and I are asking now for help with loading up this apartment, as Henry has our whole dining room stacked with gifts.

Those of you sending money-filled cards, thank you-we truly appreciate it. I make frequent trips to the Meijer store to buy bottled water (no tap water for Henry), Clorox wipes, meals/snacks, gasoline, chapstick, and other necessities for us or the apartment. I promise that we are putting your money to good use. Those of you sending the hand-made cards, we love those! They touch our hearts and we hope to find some creative way to always keep these close at hand. Teresa Long, who works with my Mom, sent a Shrek 3 practical joke kit and books as well as a Spiderman 3 book. I have been so sad that Henry will miss seeing the premiere of these movies as well as Pirates III, this summer. Coach and JoAnn Lineburg sent a pack of books and a great Bobcat visor like Coach often wears, an adorable Bee-lieve poster from the teachers at First Christian Preschool, books from Rolfe and Joyce Grubb, books from Nina McNeil-the reading teacher at Riverlawn Elementary, a special hand-made Bee and cards from Kevin and Diana Joyce and family, a neon VT clock from Larry the Neon Guy, We will Prevail Hokie shirt from Coach Mike and Linda Roop and family, a talking Toucan to bug the nurses from Judy Jarrells (Henry has begged for this FOREVER), a Meijer gift card from The Neal Girls :), Believe Angel from The Fenders, chocolate bread/funny teeth/gifts from the Bush family, a Hurry Home Henry poster from his Pack 46 scout friends and families, juggling balls/Deal or No Deal game/bear/money from Aunt Sheron and Uncle Clifton, Believe Puppy/Nerf gun/snacks/cards from Kenneth and Carrie Owens and kids, soccer ball/cones/outdoor toys from Jeffrey and Lani Redmon and kids in Bay Minette, Webkinz from Aunt Callie and Uncle Ted, signed soccer ball and cards from Stuart and Lora Covey and kids, singing frog/toys/spiderman underwear from the Scott Armentrout family, thank you Rehak family for keeping our dogs last week, NCAA basketball signed by Hokie team/frame/angel from Henry’s godparents-Jimmy and Alison Turk and family, authentic Lakers jersey and hat from our family in California-the Tiltons, cartoon DVD’s/invisible man/whoopee cushion/sidewalk chalk from the Hoover’s in Bay Minette.

Whew! I think I got them all-if I missed you, I am sorry. Thank you to Nancy, Vicki, Harriett and Dawn for your pampering gifts to me. There have been many meals delivered to the Harvey Street house and I will let Patrick update you all on those.

As you all know that most of all, we appreciate your prayers, your words of encouragement and your friendship.

Believing, Angela

Tuesday, May 22, 2007 11:02 AM CDT

UPDATE AS OF 12:00 PM

Ignore part of today's first update. We just found out that the .4 white count was actually misinformation. His care here is awesome, but his count was not accurate. His count today is actually .1...which is actually normal for day 6 after transplant. Honestly, I had a fear if his count was already .4, it might possibly be his old cells, which would be bad news. So...this is a glimpse of how we have been living our lives on the edge. Ups and downs. Angela will update more later. If you haven't read the previous update from earlier today, you can "click" on it for the other news. Keep praying, sending good thoughts and BELIEVE. (We still do!)

Tuesday, May 22, 2007 9:30 AM CDT

Good morning everyone! Possible GREAT NEWS! Henry's white cell count was .4 this morning. Until it is at .5 or higher, the doctors cannot do a manual dif. to see exactly what kind of cells (or whose) they are. It would be a little early for new cells, but Henry's case has never been "normal". Anyway, we are going to celebrate these cells and claim them as the new donor cells.

Auntie Jen and Uncle Jason arrived yesterday. Henry loves them so much, and Uncle Jason is always at Talledega races with Henry. He stayed last night with Henry while Angela and Jennifer were able to spend time at the apartment. Jennifer is an RN and is wonderful with Henry, too.

Angla will do a longer update later today. Keep praying, sending good thoughts and BELIEVE!

Monday, May 21, 2007 7:12 PM CDT

Day 5 after transplant

Just a reminder for all of the new folks that have joined the journey since the last transplant...there should be a rise in the white blood cell count between Day 10 and Day 14. There is a white count result every day and so far, it is 0.1, which is what it has been for over a month now. I know that must make some of you in the medical profession just cringe...it makes me a little uncomfortable, too.

He has had lots of energy today. He asked for a corn chip and he tried it, but it wasn't the taste that he was expecting. He played quite a bit with Anna Kate before she left this afternoon. He and Uncle Jason are at the room now so that Auntie Jen and I can get some rest at the apartment.

His photo made the local Ann Arbor News, but they did not include him in the actual article. I am going to include the web address in case any of you are interested in the visit from the professional players.

http://www.mlive.com/sports/annarbornews/index.ssf?/base/sports-2/1179758551317560.xml&coll=2&thispage=1

Short entry tonight. I am tired. He has received many wonderful packages and I will include a list and update with new photos tomorrow.

Love the guestbook entries. Have we pushed 80,000 hits yet? I forgot to look today...

Angela

Sunday, May 20, 2007 7:34 PM CDT

Henry has had another great day. He has been out of bed most of the day and has hardly pressed the button for medication from his pain pump. He has started to itch again, probably dry skin-but remember, he did that the last time. Dry eyes, dry skin, dry lips, dry nose...are all associated with transplant, but it may just be the side effects of chemotherapy.

Poor Bozo has been punched so much that he now has a band-aid over his left eye. Henry wore 5 pound weights on his wrists to do arm exercises, punched Bozo and dressed up as a superhero in a home-made (by Anna Kate)costume. It was a towel tied like a cape, a yellow mask with eyes cut out and "The Destroyer" written on it, and blue gloves. And you must picture Anna Kate was on the defensive as "The Revinator" and also as "Mad Mama". During all of that fun, some pro-football players stopped by to visit the 7 Mott kids. Aaron Shea, Marcus Knight, Charles Woodson, and Ross Ryan-I will post a photo to see if you recognize any of them.

Henry's mood is much improved. He has been very pleasant for the last 2 days, and seems to be focused on getting out of the hospital. I am so happy to see signs of the old Henry that I know is still there. Right now, he and Anna Kate are snuggled up watching Night at the Museum-he should know all of the lines by now-and so should I!

I am so sad that Patrick had to leave tonight. It was great to get to see him for almost a week. My sister, Jennifer, and her husband Jason will arrive in the morning to help me for a few days. Anna Kate leaves tomorrow :(

We should see a rise in the blood count by the end of this week and I BELIEVE that we will.

Angela

Saturday, May 19, 2007 9:45 PM CDT

Well, today has been a great day. Henry has had lots of pain in his stomache, and some bone pain and itching. However, he was out of bed playing (twice) for the first time since I have been in Michigan. I have been so worried about how weak he seems, and even a new "Wii" game could not coax him out of bed. However, today Angela bought him a full sized "Bozo the Clown" punching bag (I had one exactly like it about 40 years ago), and he got out of bed and boxed and boxed. Glad it was a punching bag and not a nurse! He made jokes today and gave Angela, Anna Kate and me back massages using the swedish-style chopping method. I have to say, it actually felt good. He then told me that Angela and I each owed him $5.00! Anna Kate's massage was free, but he did accept a tip from her. He would not let us leave the room without paying. He told Angela he learned massage from tv. (Who knows what is on at 4:00 am.)

I saw the first spark of life in him yesterday when he was verbally sparring with Fr. Patrick. (I think Henry won.) But today, the sparkle is back in his eyes. He was both funny and sweet, and complained about the nurses less than usual. Actually, his nurses are fantastic, but he still complains and says they run his life and are torturing him, etc., etc. Just wait until he starts dating!

For those of you who know Anna Kate Ellerman, (she gave the sermon at Henry's healing service) you will know that she is an absolute blessing in our lives. Henry woke at 8:00 am asking for her. She has sat beside him in his bed for hours today, patiently rubbing his sore back and scratching all of the places that itch. She is so gentle and caring, but also really fun and seems to enjoy his "boy/bodily function" humor. He (and we) truly love her. She stayed with Henry tonight so Angela and I could go out to eat at my new favorite restaurant, Real Seafood. I would consider moving here just to eat there!

It is day 50-something in the hospital, and only day two of the new transplant. The Hudred Day Countdown still has 98 days to go... but who is counting? We are thankful to be here at this fabulous hospital with an incredible staff and we are thankful for another chance at life for our boy. As always, keep praying, sending good thoughts and BELIEVE.

Friday, May 18, 2007 6:44 PM CDT

MAKE SURE THAT YOU CHECK OUT ALL FOUR NEW PHOTOS on this webpage and also at http://www.flickr.com/photos/henrymoore/

Thank you for the many compliments on the letter to the donor. I had planned it only after the news that the first transplant was unsuccessful.

The Fathers are back in Radford with many funny stories to tell you all. We had a great time and I know that they did too. It was very powerful for all of us while we said prayers together for Henry. Fr. Patrick, Fr. Kris and Anna Kate all said prayers and Henry asked for prayers for "all of the sick kids". When Fr. Kris asked Henry if He had a message for Henry's principal, Mr. Graham, Henry said, "Tell all of the kids I am coming home. It might be a few days, but I am coming home." It made all of us teary, and Anna Kate's sermon at his healing service came to mind..."Out of the mouths of children..." I hope Frs. Patrick and Kris and Anna Kate will know what a profound comfort their visit and prayers were to us. It is beautiful to see three different denominations all praying together for our son. It makes you realize that although there are many demoninations, we all love and seek comfort and help from the same God. Fr. Patrick came in and woke us to tell us goodbye this morning. He told Henry that he loved him, and Henry said, "I love you, too. You are in my prayers." That made me teary again. Thank you again for your visits.

Anna Kate spent the day with Henry so that Patrick and I could catch up on rest. She will be here with us until Monday. We just had dinner together in Henry's room and Anna Kate and I are off to Zingerman's Bakery while Henry and Patrick have a "movie and popcorn party."

Henry is doing very well despite GI upset. No temp today, more pain, but all of these symptoms are expected.

Thank you all for your prayers. Don't forget that you can join the marrow registry for free and online at www.marrow.org through May 21st!

The Moore Gang

Thursday, May 17, 2007 5:56 PM CDT

Thank you for the guestbook messages. We have really enjoyed reading them today. Anna Kate arrived safely and Fr. Patrick and Fr. Kris have seen a side to Henry that they will never forget! :) Henry has been in slight pain today and has a slightly elevated temperature both which are expected after a bone marrow transplant. He enjoyed playing some games with the priests so long as he was declared the winner! We were just surprised by a Magic Gram from Sean, Wendy, Conner, Brooke, Howie, Vicki, Luke and Rayna Phillips and Lynn Conner. Henry REALLY enjoyed it. Thanks for that surprise!
P. S. When saying/praying Grow Cells Grow-be sure to specify DONOR cells. Thanks :)

I had intended to post my letter to the donor on Henry's transplant day. I am going to include it today. I hope you enjoy it as it is from deep within my heart....

Dear Donor,

I am writing to express my deep and heartfelt thanks to you for donating your marrow to my son. I am truly sorry for not getting this note to you prior to the second request for your stem cells. I am sure that you have many questions and suspicions regarding your recipient, my son, and his family. Of course, there are restrictions that prohibit disclosure of our identity, so I will try to explain as much as I can without cheating.

Your recipient is my firstborn child. I prayed for him to be a girl and when I found out he was a boy, I could not understand why I did not get what I wanted. I then prayed for a blonde haired, blue eyed boy and that is just what I delivered. He was delivered in the millennium year, after his father and I were married for 4 years. He was celebrated by many, especially his maternal grandparents as he was their first grandchild. He was the first to continue the family name for his paternal grandparents, so he was, of course, cherished by them as well.
In his first 3 days of existence, I had an intuition that he would be taken away from me. It was a fleeting moment of grave fear that was immediately relieved by the knowledge of a friend who has persevered after the death of her son. My husband thought it was the expected baby blues, but I knew that it was real when that friend that I referenced, knocked on my front door the following day. The following weeks were hectic with countless trips to the pediatrician’s office. I often wondered if the staff thought that I was crazy or contributing his various medical needs. I was struggling to balance my desire to be the perfect first-time mother with my career ideation. He continued to appear to be a healthy baby, and he had passed all of the tests that had thus far been administered. We traveled to my home state to show him off to my relatives. Shortly after that trip, I returned to my full time job. I was so excited to try to prove to myself and my husband that I could do it all. After my second day back at work, I came home to make my husband dinner. I had your recipient in a rocking seat and I kept trying to interact with him as a new mother would do. He was listless, sleepy, and pale. I quickly started to do what every new Mom does, I referenced my books. I took his temperature and found it elevated. I quickly called his pediatrician who summoned us there for a 7pm appointment. So at 9 weeks of age, a simple blood test revealed his lack of a blood product called neutrophils, which fight bacterial infection. We thought his birth had changed our lives, but this diagnosis is what has changed our lives as well as many others. He was admitted to the local hospital and then to a major university hospital to confirm his diagnosis. The treatment for this syndrome is a bone marrow transplant. At that time, the NMDP did not have the combination of the HLA match that was sufficient for a successful transplant. Luckily, there is a medication called Neupogen to treat this disease, but his body did not immediately respond to it. The news of our child’s disease quickly spread through our close knit community. All who knew us wanted to help. We held bone marrow drives, one which added 1455 people to the registry in one day alone. Your recipient has a special personality that when seen on television, posters, and newspaper articles, mobilizes even the stoic of hearts. There were fundraisers, meals provided, raffles, and monetary donations that flowed for many months. Our heavy hearts eventually turned into joy when his little body finally began to respond to the medication. He started growing, crawling, talking, and then walking. Time was ticking and we decided that we better start LIVING our lives. We realized that his health issues were small compared to some other children’s, and that now was not the time to waste by worrying. We allowed him to enjoy trips to church, birthday parties, summer sports camps, local recreation league sports, and eventually public school. We allowed all who knew him to be able to know and enjoy him. We allowed his personality and inner strength to grow. We allowed ourselves to love him unconditionally. Eventually, he would gain two brothers. Both of which adore him and he is their protector. He is his father’s best friend. He is athletic, being called “the next Michael Jordan of our hometown.” He is the class clown. He loves to talk, laugh, play jokes, and he loves God. He has drawn hundreds to follow his daily progress. He has deepened their Faith. He has saved lives through those who have joined the NMDP in hopes to save him, but matched and donated to others.
He is a special child. He gives me joy each day. He makes me laugh when I am sad. He wipes my tears when I cry. He gives me kisses when I need them. He protects me when I feel betrayed. He loves me unconditionally.
We sought medical advice at major universities in the US and finally were told that your recipient needed a bone marrow transplant soon, as this syndrome could convert to an agressive form of leukemia. A new NMDP search revealed that you were a near perfect match. His father and I were relieved to know this and felt that this was the sign and the time to proceed. I look forward to the day that we are able to meet. I will forever be grateful to you for your selfless donation to my son, but also to our family as well as all of those who love him.

With Deep and Sincere Gratitude,

Your Recipient's Mother

Wednesday, May 16, 2007 7:33 PM CDT

Today has been both chaotic and miraculous! Henry's transplant was scheduled for tomorrow at 10:30 am. At about 3:30, Dr. Choi advised us that the marrow was here and they were doing his transplant tonight at 5:00 pm. Fr. Patrick's and Fr. Kris' plane was delayed, but they showed up at 4:30. Karen Deluca's birthday cake for Henry arrived at 4:50pm. The hospital gift shop sold smiley balloons, so a makeshift birthday party was thrown together within minutes! A wonderful box of presents arrived today from Harriet Price and family, and a really cool Mickey Mouse pirate hat came from Katherine and Kevin McGuire. He wore a "Believe" T-shirt from SeaWorld that Ryan, Julee and Ethan Buck sent. All of this just in time for the birthday. Then, during the marrow transfusion, a gentleman, "Mr. Bob", (who met Angela's dad, Rick, and Henry when his daughter was having a baby here three weeks ago) came in with a real Detroit Tigers jersey, a Tigers flag and a Red Wings flag! He brought the same for Gavin. He drove here from Detroit, out of the blue, to bring these gifts. So...it was a GREAT PARTY and a GREAT new start for Henry.

This transplant lasted only 30 minutes, but the doctors said the marrow contained over 8 million new cells. The actual marrow amount was over 30 million cells, but 8 million is a healthy dose for Henry's size, so they are freezing the rest. This Donor has to come to Radford for a huge party one of these days. He has been so unselfish and willing to help twice in a short period. He must be terrific.

We are so thankful that Fr. Patrick and Fr. Kris made it here on time and were able to bless Henry and the marrow. We feel so fortunate to have them with us. Without the gift of prayers, our life would be unbearable at times. Yesterday was very tough for Henry, and today has been difficult, also. We are just thankful for each day, and try to count our blessings in the midst of trying events. We know God has a plan. We have to believe that Henry is going to be healed. Thank you for your prayers and good thoughts. Thanks to everyone who helped make Henry's new birthday possible. Keep praying and BELIEVE.

Wednesday, May 16, 2007 2:24 PM CDT

ALERT!!!! ALERT!!!!

Dr. Choi just came in and said the transplant has been moved up to 5:00 today!!!! Fr. Patrick and Fr. Kris's plane was delayed, but they should be here before the transplant!

Please pass this email along and ask everyone you know to pray for success. Keep praying and BELIEVE!!

Wednesday, May 16, 2007 11:40 AM CDT

Henry's special donor should be finished with the donation process by now. We pray that he is doing well.

Should you be interested in joining the National Marrow Donor Program, there is a free program offered where you can actually complete the forms online and request a test kit for free. Go to www.marrow.org for more information, but don't wait too late because it is being offered between May 7th-21st, 2007. I am going to pasted the information that I copied from their website.

Join the National Marrow Donor Program (NMDP) Registry
Honor your mom this Mother’s Day by joining the NMDP Registry. Help us reach our goal of recruiting 20,000 new donors during the Thanks Mom Marrow Donor Drive. During Thanks Mom, you can join for free -- either join online or find a Thanks Mom drive near you.

There is a delay in the arrival of Father Patrick and Father Kris. We don't know if it is a weather or mechanical delay, but they are scheduled to arrive by 4pm. A special thanks to Mr. Tom Herbel of the local Knights of Columbus who will be transporting them from the airport to the hospital.

Henry is sleeping and is comfortable. The time of the transplant is not yet established, but we will let you know as soon as we know anything.

Thanks for your prayers, The Moore Family

Tuesday, May 15, 2007 6:22 PM CDT

I arrived at 7 Mott around 12:30 am, and was so happy to see my boy! He kicked Angela out of his bed and let me sleep with him last night. After tonight, I will probably be back in the lazy boy for sleeping and Angela will be back with him. I was happy to see both Angela and Henry, but am sad to see that he has become much weaker since I left. He has no energy to play and doesn't really like to sit up. He really doesn't want television or lights on. To day was radiation. It took almost two hours to zap all of his lymph nodes, and he was a trooper. He behaved perfectly and followed instructions exactly. (He did throw a fit when we returned and the nurse wanted to take his temp and blood pressure, so I know the "old Henry" is still here!) The radiation has caused terrible vomiting. He sleeps, wakes up to vomit and back to sleep. The radiologist was born in Radford, VA. His dad was studying at Tech when he was born. The transplant will likely be Thursday morning. They have to process the marrow after it arrives, so unless it is here by 3:00pm, it will have to wait until Thursday.

Angela is resting and working at the apartment this evening. She said Karen Deluca has a birthday cake in the mail that will arrive tomorrow. Karen is a fantasitc cook, so we are all looking forward to a treat. Angela is working on balloons and other birthday things. We are so happy Father Patrick and Anna Kate Ellerman will be here to pray and celebrate Henry's big day. NEWS FLASH! Laura Turk just called and said Father Kris Kramer will be coming with Father Patrick tomorrow! We thank you so much. Grace Episcopal are terrific neighbors. Thanks for your support.

Larry "the Neon Man" sent Henry a neon Hokie clock. It lights up his bedroom and makes a great night light. Henry loves it. So many people have sent other wonderful things, and we will thank you soon. The mother of little Abbie, who is here getting a transplant wrote on her website about her wonderful spa day on Mother's Day from Autumn Alexander and Marjorie Clatterbaugh from New Dimensions. The entire transplant unit is still talking about it.

Thanks for praying and thanks for BELIEVEING. God will see us through this difficult time.

Monday, May 14, 2007 8:29 PM CDT

Thanks to all who organized and participated in the prayer vigil.

Today was the final day of chemotherapy. Yes, I also thought there were 5 days of chemo, but the protocol was changed slightly after the notorious fever. Tomorrow at 3 pm, he will have his first and only radiation treatment. Some of you may not know this, but the chemotherapy really starts working about 7-10 days after it is first administered. So really, he is not feeling the full effects of it right now. He did not need any blood or platelets today and his temp has been in normal range-except the last one which was 101.7F. He was in the bed most of today until around 4pm when I basically lifted his dead weight, while he was screaming, to get some prescribed exercise. (They train us physical therapists very well!) I convinced him to get onto the big wheel and he rode it over to the adult hospital gift shop and used his dollar bills, which many of you are including in his cards, to purchase some games to play in his room. It really hurts down deep to make him get out of bed when he feels terrible as I am not sure that I could. I know that he really needs it to keep his lungs clear. When we do leave the room, he wears a mask and I touch all of the unclean surfaces. Dr. Levine believes that the benefits outweigh the risks in this matter and I agree.

Patrick will arrive at midnight and we will be so happy to see him. Father Patrick will arrive on Wednesday –I was just kidding when I said that Kishta was going to need to make a confession- and we are so thrilled that the St. Jude Parish sponsored his flight here to Ann Arbor.

It seems strange, but I can’t seem to get my mind wrapped around the fact that Henry is having another transplant this week. I haven’t made a countdown board, I haven’t planned for balloons or a cake, and I haven’t really even mentioned it much in the journal. None of this is intentional. It must be a “coping mechanism.” Soon enough, each day will be known as “Day ?” and my emotions will be commensurate with his white count.

But I Believe -as I am certain of what I cannot see……

Angela

Sunday, May 13, 2007 9:58 PM CDT

Sorry for the late entry as I have been very busy today. I had planned to attend Mass here in the hospital since my sister was here and could sit with Henry while I was away. Well, at about the time that I had asked nurse Kishta to make sure that I was awake, I was tapped on the shoulder (by Kishta) to tell me that Mass had been canceled due to a heating/cooling issue. This was a fib to get me to stay in the room so that I could receive the benefit of a surprise visit from my hair girls from Radford. [By the way, Kishta is Baptist and I have printed out the instructions on how to make a Catholic confession so she will be ready when Father Patrick arrives later this week!]

And yes, some of you already knew about this surprise... Autumn and Marjorie from New Dimensions arrived on 7 Mott at 10am this morning to treat all of the Mom's to nail polish changes and fresh hair cuts and color. They gave each of the Mom's a straw purse filled with salon shampoo and conditioner and an adorable flip-flop filled with an OPI pedicure kit. Not only did many of the Mom's reap the benefits, some of the teenage patients loved getting their nails polished, which made them feel so beautiful. My hair girls promised me that they would make a roadtrip to Michigan, but I never expected it to happen on Mother's Day weekend. All of the 7 Mott Mother's, including me, felt so special and I do believe that Autumn and Marjorie will go home with many fun stories and photos to share with their faithful clientele.

An update on Henry...no fever today!, he slept all night without pain last evening, he took some sips of a mighty shake last night, he was up and out of bed for probably 3 hours today-the most he has been up for over a week, and lastly-he has green fingernails and toenails thanks to Marjorie!

Henry and Kishta schemed a plan for my Mother's Day gift...Kishta helped him get a card and a beautiful silver heart locket for me. Marni, another nurse, wrapped up stationary and a picture album for me and I received some very touching cards from the nurses. Patrick helped Harper and Samuel make an early Happy Mother's Day call to me this morning and he sent my presents with Autumn and Marjorie. Both of the younger boys made me hand painted window art-daisies-my favorite.

Thanks to all of you for your uplifting and encouraging Mother's Day wishes via email, guestbook, and voice mail. I really feel like I am doing what you all would if called to the same occassion.

I am so happy to be a Mother today. For years, I wondered if I would become one, and now I have 3 beautiful boys that validate that title.

Sincerely and with Gratitude for a wonderful day~Angela

Saturday, May 12, 2007 9:11 PM CDT

Sorry for the late update. I am happy to report that I was able to enjoy some uninterrupted sleep at the apartment this afternoon. I have been updating the journal late in the evening after Henry gets settled in to bed, however, I never know how the evening will unfold. Nurse Kishta and I have been working great as a team with helping Henry with nausea and pain control. And just when we think he is asleep, he blurts out these funny phrases that make us laugh. He then gets angry at us for laughing, but deep inside, I think he is proud that he has fooled us. On Thursday night…He asked Kishta for some Ativan and she was at the door washing her hands to leave the room and he said, “Now step on it!” Late last night…He asked Kishta to come to the room for his headache and joint aches and while she and I were discussing the intervention he looked up at her and said, “Now get back to work!” I will be oh so happy when the Solumedrol is completed. In the midst of all of his agitation, he has found the time to whisper in my ear, “Mom, you are special to me.” It made my Friday special.

So after the journal entry late last evening, Henry developed an infusion related rash. He was hot, but not necessarily running a temp-almost like a severe sunburn. He was reacting to the Thymoglobulin. I think I am right by saying that this is rabbit antibodies. Anyway, it is a terrible drug that requires hourly vitals and this is what is making his blood pressure rise. He experienced nausea and bone and stomach pain and was finally able to rest with a combination of several medications. His pain pump is back on the IV pole and will hopefully help him through the night pains. Only 3 days of the chemotherapy left. This regimen makes the first transplant regimen seem like cake! Dr. Levine said “He will feel horrible and in 2 weeks we will get an engraftment and then he will begin to make his own neutrophils.”

I received many sweet Mother’s Day cards in the mail today. Thank you all for remembering me. Diane Fest sent a special bracelet, Elaine Paige sent a Believe angel, Misty Henderson sent me prayer cards that she handmade, the First Christian Preschool teachers sent me a special book of inspiration, a scented candle from Vanessa’s friend (Tara), and Maria Woods sent my favorite homemade biscotti with gourmet coffee and some hometown newspapers!!!

Henry continues to enjoy his fan mail-all of which is very special to us. He received a revolving dart board from Tara Olewski, bug slime and other toys from Shawna Quina and her boys, a Scottish-themed wig from Missy, a box of race souvenirs from the Talladega gang, an art project from Jason’s mama, a Wii game from The Moffet’s, T-shirts from Ms. Gert Weisberg, McDonald’s arch cards from Maggie Hoskins and her parents, Books donated in his name to the Radford Public Library from the Montuori’s, glow sticks and other things that will be great for our outdoor trips from Tracy and Ann Howard and family, special card and books from Ms. Diane Hurst and her family, Scooby Doo T-shirt and soccer ball from Jim and Eva Guiness, a Christian Motorcycle Association head wrap from the Mountain Curve Riders (Judy Jarrells and Dr. Yoder), I spy game and peanut gallery card game from Elaine Paige, Book and night glow sticks from Mary Knarr Smith and her family, and a very special (It relaxes him to watch it) digital photo frame loaded with about 25 photos of his cat from Herman Dent and all of the staff at West End Animal Clinic.
Henry received another bag of Spiderman themed gifts from the Nunamakers, Their son was on 7 Mott (when we first arrived) to get chemo to get his leukemia into remission and get him ready for his bone marrow transplant. He is now readmitted for his transplant. He has a very special donor, his adorable and sweet sister who had been hanging out up on 7 Mott with this very sweet family. Their son, Justin, will have his transplant on May 16th. I am not sure if he has a web page, but I will try to find out as he has a very courageous story to tell. They are a beautiful and sweet family and they are watching out for us every day.

Happy Mothers Day to all of you Mom's out there silently reading the journal and all of you sending me messages of encouragement as they help to get me from hurdle to hurdle. I will close with my favorite entry in the book from my kid’s preschool staff….

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

May you have wonderful day tomorrow, Angela

Friday, May 11, 2007 6:14 PM CDT

47 days in the hospital

5 days until transplant day

1 special donor

I don't have a calendar in the room and I have not counted the number of days Henry has been in the hospital in a long time. I started to think about transplant day and then I cointed them. I truly have taken the advice of many of you to just take it day by day.

Today is the first day that Henry has been able to wake up without a high temperature. The prayers worked! His temp has been in normal limits all day, until 7 pm tonight. It is 101.3 and this is probably related to the chemotherapy. Most children who receive these types of chemotherapy get a fever. They are still doing the routine tests that they do when a child starts to run a temp. just to make sure that it is in fact an infusion reaction.

I forgot to mention that the BMT team decided to start Henry on a short course of Solumedrol(steroids) to try to break the high temperatures since all of the viral and bacterial studies ruled out any major infection. This may cause his facial features to change and will definitely cause mood changes. There is hope that the steroids will increase his appetite as he has not taken any food in probably two weeks.

A few notables...He took two laps around 7 Mott on the big wheel. He is taking insulin due to increased blood sugars with the steroids. He is taking a blood pressure medication due to increased blood pressures-probably from the steroids. Also, he has been able to go all day without vomiting. This is a big deal!

As if I could not be surprised again, Button Hall sent chicken curry with rice and lentil soup on dry ice for me to enjoy a home-cooked meal. I love chicken curry and so does my sister. Mary Knarr Smith sent me some delicious chocolate chip cookies that I have not been nice enough to share with ANYONE!!! Several other packages have arrived and I will include those in tomorrow's entry.

We all recognize the power of prayer and Paige Herndon has organized a prayer vigil for Henry. For anyone who is interested there will be a 24 hour prayer vigil beginning this Sunday, May 13th at 6pm until Monday, 14th at 6pm for Henry. It is set up on Google.com/calendar, the email/name is henrymoore@phloide.com, the password is prayforhenry. Click on the time and in the "what" space put your name and then adjust the time.

We all Believe, Angela

Thursday, May 10, 2007 9:49 PM CDT

Thanks to all of you for the prayers at noon today and always. 7 Mott has been buzzing all day about the 106.9F temp that Henry experienced. As nurse Kishta says, "he gets the toastie award for the whole 7 Mott." The only way we have been able to lighten up that whole event is that the wall thermometer in his room has not worked since it recorded that high temp!

A complete viral panel was sent out (I think to the Mayo Clinic or NIH) and NONE came back positive. He is negative for all of the bacteria that show up in the stool after long use of major antibiotics. The bacteria in his central line showed Staph A-mouth-type bacteria. The rash photo has sparked lots of conversation and it is not a graft vs. host disease rash since he did not engraft. Dr. Levine and the Infectious Disease MD have been working together changing around the antibiotics to determine whether it is a drug related interaction, and so far, he is only getting a red head from the vancomycin that ceases if it is given over 2 hours rather than the regular one hour. The thought is that it is purpura or some sort of viral related rash. Dr. Levine has decided to delay a skin biopsy until absolutely necessary due to the high risk of infection from no white count.

Henry had his radiation oncology appointment today and is officially marked for his treatment which is scheduled at 3:00pm on May 15th. This is not painful to him, just the inconvenience of lying on a hard table on a strange head rest.

Tomorrow begins the chemotherapy. Both the thymoglobulin and the fludarabine will be started. Dr. Levine has warned me that Henry will be very cranky and feeling much worse than he has over the last week.

In one way, I am very sad. I had expected to spend my Mother's Day with all three boys at the apartment in Ann Arbor. In another way, I am so happy that he is here with me, giving me the tools that define motherhood.

Finally, a quick report on today. He received platelets and blood. His temp hovered at 100.1 up to a high of only 102 this afternoon. It slowly retreated to 98.9-without Motrin or Tylenol. With all of the frequent vomiting, it is getting really hard to keep any oral meds in his system. His mouth and bottom are raw from the acid in his stool and emesis. Right now, he is resting and watching Zach and Cody.

Thanks to all of you for your calls, your emails, your journal entries, your prayers, and your friendship. We all have one thing in common....We BELIEVE that Henry is going to triumph....

Angela

Thursday, May 10, 2007 8:13 AM CDT

FIRST: I accidentally replaced Angela's entry from late last night. If you haven't read it, please go to journal history and read it. Thanks, Patrick

Henry's fever has reached an all time high of 106.9 earlier this morning. I don't know how high a fever can get without severe complications, but I know this is really high. It is down to about 103 now, after ice packs. I think he is going to start a steroid therapy today, and chemo is scheduled for tomorrow. Please pray that this fever and vomiting will cease. Angela was up all night and I know she is exhausted and at her wit's end. Me, too. The unexplainable fever is a mystery to everyone and the not knowing is difficult. Keep praying and BELIEVING. Things will get better.

If you didn't go on the "FLICKR" site yesterday, there are about 20 new photos of him playing outside. Look at yesterday's entry. Thanks, Patrick

Patrick did not include the request that I had made in last night's journal entry. So I will now. I have never been one to ask for a specific prayer, BUT COULD YOU ALL AT ONE TIME (12 NOON) ON MAY 10TH SEND UP A PRAYER FOR THE FEVER TO GO AWAY SO THAT HIS LITTLE BODY CAN REST BEFORE THE TRANSPLANT PREPARATION.

Dr. Levine has just warned me that the next 2 weeks are going to be worse than this past week. We can all do this together with our Faith in God as our strength.
Angela

Wednesday, May 9, 2007 10:17 PM CDT

Henry had another good day. He made 4 trips around the large square that defines 7Mott. He has played with Missy, rested up during the temperature changes and is now up playing with Auntie Nasty. He has had terrible GI upset both top and bottom-more than when he had the last chemotherapy. The cause of the temps has not surfaced, and I have to say that his temp is not quite getting up to 105 anymore. Today we had rain so we were not able to venture outdoors.

My wonderful husband, Patrick, has written beautiful journal entries while I have been busier with Henry's care. I do need to make one correction in yesterday's entry, though. Mashawn and I have been eating delicious meals prepared by Lora Covey and her sister Missy. I have some frozen at the apartment when my stomach is begging for a home-cooked meal. Thanks to both of them for helping me out during this unpredictable time with Henry. Until you are actually here watching the days and nights unfold, you cannot imagine how small the room actually is, how the beeps from the IV pump keep you just above the level of a deep sleep, and how daunting the whole process really is. Angela Davis and Lora Covey have been witnesses to it and their perspectives are forever changed.

Henry has an appointment with the radiation oncology department tomorrow to have the locations of the lymph nodes marked for the dose of radiation. If I have it right, I think he will actually get a "test dose" to plan for next week.

The BMT team continues to meet extensively about Henry. I feel that Dr. Levine is moving in a fashion as if he were caring for his own child. Because of the wonderful staff here, I am able to sit back and let them do their job. My "Mom instinct" will urge me to ask a question and they always listen and try to make me as comfortable as they can. I am so happy to be at Mott's, even though we are far from home. Their "final plan" is to give thymoglobulin and fludarabine followed by total lymph node irradiation before transplant day. I do feel that the transplant will probably happen on the 17th because the pharesis to retrieve the stem cells from the donor will take a few hours and then they will travel into the Detroit airport and then over to Ann Arbor. The stem cells then go through a process here at the hospital blood bank prior to transplant. If so, Fr. Patrick and probably Anna Kate Ellerman will be on hand for blessings. My friend Julee sent a shirt from Sea World with Believe on it that will be so fitting for transplant day.

I have never been one to ask for a specific prayer, BUT COULD YOU ALL AT ONE TIME (12 NOON) ON MAY 10TH SEND UP A PRAYER FOR THE FEVER TO GO AWAY SO THAT HIS LITTLE BODY CAN REST BEFORE THE TRANSPLANT PREPARATION.

It has been a wonderful week of reuniting with relatives from California as well as getting a guestbook entry from Aunt Cile and her daughters in White House Fork, and hearing from many old friends in Bay Minette, AL.

A huge thanks from the bottom of my heart to all of our friends for your genuine support of our family. You have truly made this journey feel so different than I would have ever predicted.

Love, Angela

Tuesday, May 8, 2007 8:03 PM CDT

Make sure that you look at all four photos on this page and also go to the following web page for about 20 more photos from our courtyard visit today. They are sure to make you smile.

http://www.flickr.com/photos/henrymoore/

OK all you Believers….This afternoon was a BETTER DAY!! Henry’s temp fluctuated up and down. It seems that there may be some fluid on his lungs and the Dr. Levine said Henry had to get out of bed and get some exercise. We are used to telling Henry he has to get IN bed and get some rest. After some tears and complaining, Angela got him OUTSIDE! Gavin got to go, too. They couldn’t touch each other, but they could shoot Nerf guns at each other and at Gary, the Nurse Practitioner or Physician’s assistant. (sorry, I forgot which) Angela said he laughed and smiled and I could hear the joy in her voice when she said, “I can deal with the fevers as long as we can have an hour like this. I have my baby back.” She will add new, happy pictures later.

To be honest, while our faith is strong, Angela and I have been very fearful and worried. A day like this afternoon helps restore us and remind us to be strong. Because of the fever, the doctors have changed some of Henry’s chemo protocol and he will not be getting the Campath. Angela will explain later exactly what lies ahead regarding his preparation, but we are charging head-on for next Wednesday or Thursday. Henry is having a ct scan of his sinuses and his arm this evening. Still looking for the source of infection. Angela will update tomorrow afternoon-after she has met with the doctors and has the results of these tests. Keep up the prayers and good thoughts and keep BELIEVEING!

Samuel, Harper and I have really enjoyed the wonderful dinners. The Vinsons, Diane Fest, Vickie Phillips and Lynn Conner have truly outdone themselves. I almost feel guilty eating so well when I know Angela is eating hospital cafeteria food…but, even though I feel guilty, don’t stop the fantastic food. I will get over the guilt!

ATTENTION DOCTORS, NURSES AND AUNTIE NASTY: STOP READING NOW! I don’t want to spoil Henry’s fun. Today I went to Spencers and bought Henry a bag full of gags. Just in time for Auntie Nasty! I found a “gas” machine with SIX variations ranging from “The Ripper” to “Nervous Stomach”! It is electronic and very gross. He will love it. Also, some rubber “doggy doo” and other yucky stuff. I promise that none of these will ever show up at McHarg.

Tuesday, May 8, 2007 8:48 AM CDT

Another night of up and down fevers. At 6:30 am, Angela called and said his temp was back up to 105.8. A little later, it was down to 101 but he says his arm hurts. He is going to get platelets this morning. That usually helps. The doctors have treated for bacteria, fungus, and now virus but his temp keeps yo-yoing. He has been scanned and x-rayed and test after test, yet we still are baffled by the cause. I know he feels rotten, and I see the look in his eyes and the lack of a smile on his face in the new photos. It is getting harder and harder for Angela and me to cope. I just hope he can stay strong until the next transplant.

I try to focus on August, which I think is when he and Angela will be home if all goes well. I think about taking him fishing, and fussing with him about why he can't go to the pool this year. He will get to go to some Tech and Bobcat football games, probably with a mask, but it is still going to be fun. He get so "worked up" over sports. I planted some flowers last night so that, hopefully, people will know that someone actually lives there. Harper helped "unplant" them behind me, and it reminded me of Henry pulling every tulip bulb up behind me when he was three. I was planting several hundred tulips and planned them according to color and bloom time, and Henry uprooted them all and put them in a big pile, mixing all of the colors. That was one of the first times I wanted to spank him. (of course, I didn't) It was a lovely surprise to see the tulips come up in different colors and in different areas that I planned. It was a rainbow of colors, and I loved it.

Keep praying and keep sending us the notes of encouragement on the journal. Keep BELIEVEING! -Patrick

Monday, May 7, 2007 11:35 AM CDT

Hey guys- I really don't know all of the technical information, but I just talked with Angela and wanted to give a quick update. Henry's temp was 104.7 this morning. He is getting a transfusion of blood today. Things are "up and down", and it is emotional. Henry is having stomache pain. Dr. Levine seems concerned that the fever isn't gone, but did more abdominal xrays this morning and still doesn't see anything growing. The longer we wait on the transplant, the more dangerous it can be, so we are still marching forward. They really want the fever gone before they start a particular chemo.

Henry is resting and as Kathy Lillard once told us, "As long as he is sleeping, he is not vomiting or in a lot of pain." So for now, sleeping is good.

Lora Covey left yesterday and her sister, Missy, came right behind her. Thank you, Lora, for such a gift to leave your family and help mine. Angela says Missy is terrific with Henry-even during the tantrums. I think Henry is finally mad and angry. I guess he has a right to be. I've passed that phase and hope it doesn't come back. I know it is a "stage" but it really doesn't help. I went to church on Saturday night, instead of Sunday. I really needed to be in church and feel God's presence, but I wanted to go when it wasn't so crowded. It is hard to talk about this so much, even with people who really, really care. But this doesn't mean that we don't want and need your prayers and kind thoughts and words. We have to keep on living the faith we verbalize and know that all of this is in God's hands and that we will be comforted by our faith.

Angela will probably update later with more (accurate) information and the next step in Henry's care. Thank you all. Patrick

Sunday, May 6, 2007 12:27 AM CDT

Henry is feeling lively this afternoon. He had 105.3F temp this morning, but it is normal now. He did not require any blood products today and therefore he is not puffy like yesterday. His liver and kidney lab results are in normal range. His abdomen continues painful to touch and slightly enlarged.

Dr. Levine reviewed the CT scan extensively with the radiologist this morning. He was not impressed with the fluid and feels that it is an inflammatory response-possibly due to the prior chemotherapy regimen. He will watch it closely and I trust his judgment. He did assure me that this was not the dreaded veno-occlusive disease that is often associated with chemotherapy and bone marrow transplant.

Everything is still on schedule for transplant on May 16th or 17th and the next chemotherapy will probably start on May 11th.

Thank you all for checking in. It is chilly and sunny here. Lora left early this morning and her sister Missy is due here any time.

Angela

Sunday, May 6, 2007 8:11 AM CDT

I wanted to update early so that there would be information for you all to take to church with you. Henry’s temperature remained normal all day yesterday-only to rise to 104F last night. His abdomen is very painful and he still feels awful. The CT scan revealed an area of inflammation or fluid around Henry’s liver. He has started retaining fluid and has gained about 4 pounds over the last 48 hours. I went to the apartment for rest in the afternoon and I noticed when I returned later that his eyes were very puffy. His liver and kidney lab tests are all within normal range and a dose of Lasix has helped him to rid his body of some of the extra fluid.

Dr. Levine will be making rounds later and I will learn more about the CT scan results. I will let you all know as soon as I know anything.

Riding an invisible roller coaster in Michigan, Angela

Saturday, May 5, 2007 11:23 AM CDT

Henry’s temperature bounced around all day yesterday. After I posted that it was back to normal late yesterday morning, it climbed back to 105.5F by early afternoon. By late evening, it was back to normal range and then up to 103F and 104F last night. He received platelets twice yesterday and blood as well and is due to receive both products again today.

The CT scan was this morning. It is to check for any infections that may be present in addition to the known infection in the blood. I will keep you posted on those results. The latest blood cultures showed that there were gram positive bacteria in all four of the catheter lumens (this means it is not a central line infection but a blood infection). Dr. Levine is being aggressive to search for the source of the infection. He wants to ensure that there is not a virus or fungus that could also be contributing to such high temperature readings.

I was able to get some rest at the apartment yesterday afternoon while Lora took “Henry duty.” We have decided that the nurses and our relief help should receive combat pay while caring for him in this febrile state. He is demanding, grumpy, and funny all at the same time. She brought in a warm dump cake for the staff and they quickly wanted to know what time she was scheduled to arrive today! Between Karen Deluca and Lora, we will have the staff at our beckoning.

Rest assured that Henry is in good hands here. The staff and physicians are aware of our needs and try every way possible to help. Dr. Levine gave Henry a “get out of jail” card for later today. We will be able to go to the hospital courtyard (without the IV pole in tow) for some much needed fresh air.

I want to sincerely thank you all for your messages. I want to keep telling you so that you know that I mean it. They truly do help. Angela

Friday, May 4, 2007 12:09 AM CDT

As promised, I want to give you all the latest information as we know it. The stem cells will be collected from the donor on May 16th. The transplant will happen on May 16th or 17th.
As for the fever...Dr. Levine is being aggressive. Henry will have an abdominal scan and several differnt lab tests today to check for any virus or fungus that could be causing this high temperature.
I want to thank all of you for your very comforting words this morning.
Angela

Friday, May 4, 2007 9:38 AM CDT

His temp is down to 99.6F! He has not been out of the bed since Wednesday. He has upset tummy and feels rotten all over. They are monitoring his blood counts and vitals frequently and taking good care of him.
Your prayers this morning worked. Thank you all for helping to get us through this.
Angela

Friday, May 4, 2007 7:20 AM CDT

I just talked with Angela, and they have been up all night. Henry has a fever of 105.8. As you know, this is dangerously high. He has ice packs on his body. He is getting platelets, but I think the high fever negatively affects them. Until the fever breaks, Henry cannot begin chemo in preparation for the new transplant. Results are back on some of the blood tests, and he "grew" a "gram positive bacteria" in one culture. We don't know specifically,yet. While he has no natural immune system, we are going to be on pins and needles. Every day is a dangerous one. They have added stronger antibiotics to his iv line.

Hopefully, I will have more (better) news later today. Thankfully, Lora Covey arrived to help yesterday. It is very hard to be alone when things get rocky. Thank you Covey family for your kindness and generosity.

Say an extra prayer today. Patrick

Thursday, May 3, 2007 10:57 AM CDT

Okay, it was a Tina Turner impersonator! But Patrick had fun and knew all of the words to her songs. Thank you to the Davis' for taking him to that concert-all for a good cause, too.

So, if you missed the entry last evening, you missed good news. The donor has agreed to donate again. This means that he will need to get "medical clearance" and do a few other tests, along with taking the neupogen injections long enough to build up enough stem cells to donate to Henry. Due to all of those "unknowns", we do not yet have a specific date. Dr. Levine said today, "as soon as we can get it."

The plan is for 5 days of preparation using Campath, Fludarabine, and total lymph node radiation. So far, none of that has been scheduled.

Every morning that I wake up beside Henry, I reach over to touch his head to check his temperature. Today, he felt hot. And yes, the fever is back. 102F They did the whole routine of blood cultures, chest X ray, and started the IV antibiotics back. I will keep you posted on those results.

I hope that you enjoy the new photos. Yesterday, Henry spent all day at his door playing tricks with a dollar bill with an invisible fishing line taped to it. He would open his door, toss the dollar out into the hallway (as if someone had dropped it), and would peek through his window to watch for his next victim. Yes, even the brightest surgeons stooped down to retrieve the dollar bill-only to have it jerked away at the last second by Henry pulling on that invisible string! Never mind the mask, nor the germs on the floor- I just finally gave up worrying about it. He had a great time and that means so much right now.

If you think Henry is amazing-we think you all are. You continue to take time out of your day to check on him, to send us notes and guestbook messages, and you take time to pray for us. Thank you so much! Angela

Wednesday, May 2, 2007 4:34 PM CDT

Make sure you look at all 4 of the new photos.

The NMDP is an awesome organization. Patrick called this afternoon, just before they closed and spoke with the Office of Patient Advocacy. He told them that we were very anxious to hear about the donor's willingness to donate again. Within 30 minutes, I had received a call from the transplant coordinator here at University of Michigan stating that the donor was in fact willing to donate again! I certainly hope that he will want to meet us in a year. I am not sure that he will be able to withstand our hugs-for they will be so tight.
Again, I will ask that you all pray for the donor. I am sure that he is wondering about Henry's status, since he is being asked to donate again, so soon. This second transplant will probably disrupt another of his holidays this year, Mother's Day. His donation will allow me to have a wonderful Mother's Day....

Believe....it is working for Team Gavin. His bone marrow biopsy showed no abnormal leukemia cells. The biopsy is being further reviewed, but so far, good news.

Thank you all for surrounding us with love and support. We really need it right now. Angela

P. S. Patrick is going to Roanoke tonight with the Davis gang to see Tina Turner. She is his ultimate Rock Star. He is soooooo excited! Good for him. He pulled "Henry Duty" for 3 full days and did a great job.

Wednesday, May 2, 2007 5:44 AM CDT

Free Countdown Clocks at WishAFriend.com

I hope that you enjoy the countdown clock. Henry named Auntie Nasty when he was VERY small and could not say her name, Vanessa. We sent a package to “Auntie Nasty” that she had to sign to receive and the postal worker was so happy to finally meet the person behind this interesting name! Anyway, Henry and Vanessa are so much alike. Sometimes, I look at him and think that I may actually never GET RID OF MY SISTER!!! They are so looking forward to their time together.

Lora Covey will arrive this Thursday to help me through Sunday and her sister, Missy who is a lymphoma survivor, will arrive on Sunday to help me until Vanessa arrives on Wednesday. I really need the support of another person right now and feel so lucky to have wonderful friends.

Patrick and the boys will leave Ann Arbor by 830 this morning to make their 1030 flight in Detroit. It will be sad, but we are so thankful for our reunion. The hospital room proved quite small for 3 brothers! Samuel, Harper and I spent most of the time together-reading, snuggling, talking, and playing. Today, we were able to visit the wonderful Hands on Museum in Ann Arbor. Harper is talking so much and is repeating everything that Samuel says-just like Samuel did to Henry not too many years ago. Harper must have said “Mom” 400 hundred times this weekend, and for once, I loved it and answered him every single time. I have to say that caring for them has been a real distraction from the stress related to the re-transplant. I can honestly say that I have not known Henry’s lab results for the last few days and my life revolved around that for almost a month!

Patrick has spoken with Dr. Levine who has spoken with physicians elsewhere and has discovered that engraftment failure has recently happened with another child with Kostmann’s Syndrome. The BMT team has met extensively about Henry and is still trying to determine the final protocol for the second transplant. Right now, a light dose of radiation is being scheduled right before the transplant infusion. It will be directed specifically at the lymphocytes that are the suspected cause of the failed engraftment. He will also receive chemotherapy and they have not yet finalized the specific medications.

I am sure that all of you want to know if we know anything about the donor. We do not and we have been told that we may not know anything until Thursday. We will update the site as soon as we know the plan. It is a comfort to us that the perfect umbilical cord match is on hold for Henry in the event that the donor cannot donate again, so soon after the last donation. The donor will not undergo anesthesia for the second donation. He will take the Neupogen shots and donate the stem cells from his bloodstream, while sitting in a chair. I hope that makes his decision much easier.

We have also been told that the May 14th transplant date is tentative and subject to change.

Your love and support is giving us the strength to get through this. We BELIEVE that Henry is going to be just fine.

Angela

Tuesday, May 1, 2007 12:03 AM CDT

Free Countdown Clocks at WishAFriend.com

We have met with Dr.Levine and we have a better understanding of what is to come. There are many concerns, and they are thinking and re-thinking the next transplant--even consulting with doctors at other hospitals. We know we are in the best place we can be and we have confidence in the staff. We will not know until Thursday the "total plan," and as soon as we know anything, we will let you know.

The contact was requested with Henry's donor yesterday. We haven't heard whether or not he will donate again, but Dr. Levine has every reason to believe he will. Donors are told that multiple transplants may be necessary. I promise to let you know as soon as we know.

Last night Henry and I "THE TALK". We talked about how his first year of soccer wasn't so great. He didn't score. The team didn't win. BUT, the next season...he scored a lot. His team was undefeated. Sometimes, the first try isn't always the best. I explained that the first transplant didn't work, and that we were going to do it again. As you might guess, he had some questions about "Why?" and then he said, "OK. I'll do it!"

We have so many people to thank for their kind cards, letters and gifts. If we miss thanking you, please forgive our manners. It gets chaotic here and our memory gets foggy. The Radford City Council sent Henry a wonderful package with a Radford hat, letter,and other things. Laurie Buchwald also sent gel gems and a bag of flowers to grow at the apartment. Coach and Mrs. Lineburg sent a Bobcat hat, shirt, candy and a sweet stuffed bunny. Ken and Joyce Pendergrast sent a zoo shirt, nerf guns (that Henry and B are shooting in the picture) and a HUGE HIT-Spiderman Operation game. Henry has played against most of the nurses and doctors on the floor....and I'm glad some of them aren't surgeons! Auntie Nasty sent a cool shirt with pictures of Henry flexing his muscles on the beach. The Emme's sent a turkey call (Go Hokies) and musical wooden frog. "Mr. Ed" Savage (who owns the best seafood restaurant in the NRV) sent a balloon Looney Toons kit and T-shirt. The Eanes sent a magic set--he loves magic! The Vacarros sent a Bobcat Blanket (he sleeps with it) and cards from St. John Newman School in Blacksburg. The Rehak's sent us some great artwork. The DeLucas are going to make us the most popular room on the hall...They sent a big box of home made goodies for the nurses and doctors! Ethan Bell and is family sent a very special scrap book about scouting and school! Heather left room to add special memories from this journey. They Yoders sent a Magic Drawing Board. Barbara Gibbs, formerly with WSLS 10 in Roanoke, and now an anchor in Raliegh, NC, sent a wonderful note and a Shrek dvd. It is one of Henry's favorites. (mine,too. We left our copy in Radford, so he was excited to have a copy for here. Emily Bassinger from Wytheville sent art work and lots of favorite snacks. The Likens sent a whole box of fun things for Henry and us. Henry really loves the Bozo punching bag. I liked the "Box of Luck"! It has a four leaf clover, horse shoe, rabbits foot (not real!), lucky number 7 and other good luck things. We NEED IT! Larry Sams and Melissa Stump sent a Soccer Candy Bouquet. The nurses love it, too. The surprises in the mail are terrific, fun and help pass the day, and Henry often shares them with kids on the hall. But please know that your notes on this website, telephone messages and the little notes of encouragement are JUST as important. We do get strength from your kind words and your prayers do lift us up. Angela and I had a special talk with Henry's pediatrician back home. Dr. Gehrz saved Henry's life when he was a baby, and probably several more times throughout his life. We truly love him and thank God for bringing us together.

WDBJ 7 just called and they are going to do an update on Henry tonight at 5, 6 and maybe 11. Keep praying. - Patrick

Monday, April 30, 2007 7:58 AM CDT

I am here! (That is for Katie the Cake Lady)
After the shock and sadness passed, I was immediately filled with peace. Julie Weltens-I read your guestbook entry and our “talk” came to mind when trying to process that horrible news on Friday. I know that most of you have known our family long enough to know that we come together in tough situations….and have we had many!

As bad as all of this may seem to all of you, there are many families on 7Mott that are dealing with very similar and stressful situations. We appreciate the kind thoughts and prayers that you have sent their way. I guess that you all are reading the guestbook entries from the other kids/families here and have realized that 7Mott has it’s own “Night at the Museum”, very late at night. The kids don their masks and sneak out of their rooms and do fun things. The nurses really do help to make it so much fun for them.

I am enjoying my time with Samuel and Harper here at the apartment. Patrick has been staying at the hospital with Henry as the younger boys have colds and I don’t want Henry exposed. We have planned a trip to the Hands on Museum and Chuck E. Cheese’s, and there are many parks from which to choose to enjoy some outside time.

Several questions that I keep getting and want to answer for those of you who are interested:

1. Has the donor been contacted? The paperwork was completed late Friday afternoon and was submitted to the National Marrow Donor Program. I am not sure when we will know his answer, but I know that the urgency of the need will be communicated to him. We will let you all know as soon as we know.
2. Why did it fail? The BMT team feels that Henry had a large amount of his own mature lymphocytes in his blood stream on the day that his count went up to 0.7. These cells attacked the donor cells and cause the graft failure. The next chemotherapy will be Campath and Fludarabine which will be more toxic than the prior regimen which is supposed to kill all of his old cells.

The biggest concern right now is that Henry will be without an immune system for about 5 weeks. While there are many major antibiotics to fight infections, this length of time could make him more susceptible to bacteria that are resistant to antibiotics. So, right now, he is not on any antibiotics. They will add back the antibiotics as he needs them. He is getting IV nutrition and has not had much of an appetite. He is not in any pain, and has had lots of energy. He is getting blood and platelets as his body is not making those cells in addition to not making the white blood cells.
We feel very confident in the care that he is receiving here. We appreciate the loving words in your guestbook entries, your emails, and your phone calls.
I Believe……
Angela

Sunday, April 29, 2007 5:46 PM CDT

Sorry for the late update. Samuel, Harper and I arrived in Michigan last night. It was very sweet to see all three boys together again. Harper loved rubbing Henry's soft hair. On the plane, Samuel asked if he could be a doctor when he grew up. I said, "Sure, baby. But why?" He said so he could help Henry get better so Henry could come home. Hopefully, we will be home before that. Angela and B Davis left today. Henry is sad. They had such a great time together. Their trip here was so important in so many ways....and at just the right time. Poppy left today, too. It is a little sad and definately more quiet here with all of the friends gone. I thank God for the Davis' and Poppy (and Mimi...for making it easy for Poppy to be away, and helping book the flights for us to be here now...actually she read the flights and times to me in the car...I said, "Great" and she did the rest. I really appreciate all everyone has done. The news last Friday was easier to accept with loving friends and family around. Mike Johnston and Ed Cox both "happened" to be there for me Friday at work, and the Stuart and Janet Goldstien took me to dinner Friday night. The Rehaks offered to watch our "other babies", Breck and Brigett (our yorkies). They are 11 years old and I hope they are not terrorizing the Rehak's yorkie, Scout. I love those dogs a lot, and I'm glad they are in good hands. (I told them they were going to "camp". I thank all of you for being there for us. I am learning that "walking the walk" is much harder than "talking the talk".

Poppy and Henry are usually at the Talledega race this weekend. Poppy gave that up to be here with his buddy Henry. We called Poppy at the airport with updates. The nurse was taking Henry's blood pressure and he yelled, "I can't take it! It's killing me!". I told him to be nice to the nurse and he said, "Not the blood pressure cuff! The RACE!! Two Chevies came in first and second. Luckily, both drive for Hendrick's Motorsports and they both raise LOTS of money for marrow! You'll be happy to know, ten minutes after the race they re-checked his pressure, and it is back to normal. (I'm sorry that I don't know how to spell check on this site).

Little Maddie checked back into the hospital today. She has a fever. Even when you "leave" the hospital, you don't know when you will be back. I want you to know that Henry is as strong and full of life as ever. We haven't figured out how to tell him that we have to "do this again". Please pray for us to be strong and wise when we break the news. I am sure he will be fine.

The boys and I will be here until Wednesday. Hopefully, we will know more tomorrow. Keep us in your thoughts and prayers.

Saturday, April 28, 2007 7:44 AM CDT

Today is a new day! I woke up with birds singing outside my window and I know that today is a better, brighter day. (If you didn't see yesterday evening's entry, you may want to read it first.) My mother-in-law, Sheila, found three very cheap last-minute flights to Michigan. Samuel, Harper and I will be with Henry and Angela before 6 pm tonight!!! We will return here Wednesday afternoon. I just told the little boys this morning, and they are so excited. I want us to be a family again, even if for just a few days. It will be good for all of us.

If you cried for a few minutes yesterday, it is OK. I know I did. But then I pictured Henry playing with B (Hours after his surgery) and I knew that it was time to face the "situation" head-on and buckle down. We don't have time for crying or sadness. We say we BELIEVE. If we truly do, then let us live it. Henry told Angela, "Mom-it is going to work. My cells are going to grow!" What he DIDN'T say is, "Mom-it is going to work TODAY." He doesn't know God's time anymore than we do. He just KNOWS it is going to work. So do I. And if YOU don't...you don't know Henry.

At bedtime, since Henry's early days at Duke, he prayed for specific sick children. Malcolm Powell (a TWO transplant survivor from Radford!) was one of them. Henry always ended his prayers with..."And God bless all the sick kids in the world." I hope you will end your prayers for Henry like this, too. Thanks for your guest book words. We need them more than ever. PRAY! -Patrick

Friday, April 27, 2007 3:47 PM CDT

We have the preliminary results back from the biopsy and it appears that Henry's body has rejected his Donor's marrow. The doctors are going to contact the Donor as soon as possible and see if he is willing to donate again. The Donor's body cannot make enough marrow as quickly as we need it, so they are going to ask him to take neupogen shots before they collect the cells from his blood stream. This procedure is similar to dialysis. Henry will have a new and more aggressive chemotherapy regimen. It sounds like they will "blast" his body this time to be as certain as possible that every "bad cell" is destroyed. His next transplant is scheduled for May 14th. I bet Henry will say this is his "THIRD "Other" BIRTHDAY", and will expect three parties a year. He deserves it.

Now is the time to "buck up" and stand strong. Henry is. He is already playing with B Davis after his procedure this afternoon! We know kids that have had two transplants and are surviving and "normal" now. We need you praying harder than ever. Please don't forget the other kids on his hall. They need your prayers, too. Keep your notes of encouragement coming. We really love reading them. We will keep you posted. Don't give up. Henry hasn't. - Patrick

Friday, April 27, 2007 6:32 AM CDT

Henry's count dropped to 0.1 this morning. This isn't the number we were praying for. He will undergo a marrow biopsy today at 11:30 am. If I understand correctly, (this is Patrick) the doctors will find (a) the marrow space "empty," which means the transplant did not work. (b) Baby cells in the marrow, which could be Henry's old "bad" cells. Or, (c) the baby cells could be the donor's cell and they are working slower than we would like. Please pray for a "C"!! (I know it will be hard for all you teachers to do this.)

I lay in bed, awake this morning waiting for "the call." I think I prayed in my sleep, and I am certain that I was praying when I woke. I now have to pray to be patient and wait for God's plan at God's time. If we knew HOW and WHEN, we wouldn't need faith. If Henry needs another transplant, please pray for the Donor once again, and ask that God give him the strength, courage and love to go through with this one more time. Pray for Angela and me, that we have the strength of body, mind and soul to be supportive of Henry. Henry has it "going on." I don't doubt his faith, spirit or determination to survive. He will make it through this. I am certain of it. God's calendar is the mystery. Please have faith.

On a much happier note, Angela and B Davis arrived yesterday. My Angela and Henry are thrilled. I am so glad they are there to lend a smile, shoulder or word of comfort today. I am sure that B and Henry have the 7th Floor of Mott's super-charged. What a gift that the Davis's scheduled their trip to be with Angela and Henry on a day like today. (Can you see God's work here?) He has never given me more than I can handle...and evidently, I can handle a heck of a lot! We will handle this, too--with a little help from our friends. Keep the faith. Keep the prayers coming. Keep telling your family and friends how much you care about them. We will update again today after the biopsy. *** We just found out that we will not know the results of his biopsy until MONDAY. If we know anything any sooner, we will update immediately.-Patrick

Thursday, April 26, 2007 9:36 AM CDT

Hey everyone. This is Patrick updating. Angela is having computer connection problems, and she asked me to update. First, while it is difficult to be away from Angela and Henry, it is great to be back in the NRV with Samuel and Harper and all of the caring friends here. Second, being back makes me realize just how difficult it is being there. I cannot explain existing like we do there, but I am so proud of Angela. She is the best Mom a kid could want. She's not only his Mother, but also his best caretaker. I love her very much.

Last night we saw the "sign" that so many of us have been praying for...just a little glimmer of hope that the Donor's marrow might be growing!!! Thanks for your prayers. We DO feel them. This morning's count was .2 again! The not so good news...it didn't go up from last night. The great news...it stayed up at .2! Henry played his Wii game most of the day. Jonathan (the Rooker's nephew) came to play. He is a favorite volunteer and an incredible and caring young man. Henry is eating better, and that's a big step for us.

Poppy surpised Angela and Henry a day early and arrived yesterday afternoon. That was just what the Dr. ordered. Henry adores Angela's Dad and it was a real spirit-booster for Henry! Not to mention so much help for Angela. Angela and B Davis are coming for a visit today, too. I wish you could all know how much this means to Angela, Henry and me. Henry has been counting the days. I hope the girls can have some time to do "girl stuff."

The food brought to our house has been incredible! Thank you Kathy Lillard and Julie Akers. I lost 7 lbs. in Michigan, and am afraid it will quickly pile back on.

Mrs. Patterson and Mrs. Goodman brought by a huge blue and green ribbon for our mailbox. The streamers have a beautiful message encouraging us to BELIEVE Henry will be healed. They also made smaller ribbons to wear. Thank you so much. The McHarg people are the best we could ever hope for. Thanks for checking. Remember to leave a note if you are so inclined. We love to read them. -Patrick

Wednesday, April 25, 2007 6:13 AM CDT

Day +19-doing an early update because I know that you all are as anxious as I was...

WBC 0.1

Here are the positives...

No apparent infection/fever, he is eating small amounts, pain pump is gone, no GI upset

Yesterday, I was talking to someone on the phone and mentioned that he white count had been staying down. He looked over at me and firmly said, "Mom, this is going to work."

I've got to believe it. Believe.....that is Gavin's Mom's motto.

Angela

Tuesday, April 24, 2007 11:24 AM CDT

Day +18

WBC 0.1

Yes, we are all baffled. I am happy to report that he is up and Boxing on the Wii game with one of the volunteer "med buddies." He feels great.

On day 21, if there is no white count, they will do a marrow biopsy on Henry. If it shows no donor cells or no cells at all, they do have a plan ready.

The plan would be to go back to the donor to see if he would donate again. Henry would need chemotherapy again and a drug called ATG to ready himself for yet another transplant.

I feel better after a long hot shower. I am asking that each of you say extra prayers today for God's will in all of this.

It is beautiful here in Ann Arbor and I am going out for a walk while the volunteer is here.

Angela

Monday, April 23, 2007 3:47 PM CDT

Henry is sleeping through his blood transfusion, so I have time to do a second update today. The physicians aren’t too worried about the blood count today. There are a few possible explanations: 1. he has been receiving the Neupogen to boost his counts through his IV rather than in the leg (this was changed when he was grumpy last week) and it is absorbed better when given in the leg under the skin. 2. The Tacrolimus (Prograf) was held for a day to let the blood levels get back into normal range. This is supposed to suppress his immune system to let the new marrow grow and this may have interfered with what they normally see. 3. The new white cells that are being made are going straight to work to fight infection, therefore being destroyed before being detected on a blood count.

Who knows, but as Morgan Holsinger said it in the guestbook today, be thankful for all of the positive things that are happening and let others pray when you are just too exhausted, because He does deserve the glory. I visited with Morgan this afternoon. She looks great and her hug made me feel better. She is well on her way out of here. I then walked outside to the Arboretum. It started to sprinkle rain and I felt like I better not test my luck, so I came back inside.

Henry ate quite a bit on Saturday while Mirielle was here. Saturday night, Henry and Gavin and their nurse, Anne, sneaked out to the conference room and cooked on her George Foreman grill! They cooked chicken and steak and they both ate small cubes of it when they were finished. It was 1:00am and Mashawn (Gavin’s Mom) and I were exhausted and those two wanted to watch a movie after their meal. They had planned a late night game of baseball in the hallway on Sunday night, but Gavin’s tummy was hurting. He was able to go outside on Saturday and Sunday for a picnic with his nurse Carol and his Mom. We are looking forward to that!

Henry’s spirits have lifted by the many thoughtful gifts that he has received. He received many sweet cards, some with dollars in them. He always tells me to “just add it to my pile”-and I do. Then he asks me to count it for him.  He received some boxes over the last few days…loved the Spiderman potato head from Aunt Callie and Uncle Ted, the back scratcher from Auntie Jen and Uncle Jason –PRICELESS with the itchy feet, the Spiderman walkie-talkies and the Spiderman and Pirates of the Caribbean movies from the Skewes have been passed between the boys and the nurses on the unit, adorable hand made cards from the Rehak and Schafer children, a personalized mug and hand-made cards from the 4 year olds at Gethsemane Baptist Church, a box with fun room décor and a retracting soft baseball from the Joyce’s, VT attire and an Earnhardt head wrap and a picture of Sam and Harper wearing hats that say I heart Henry from Wendy Phillips and her family, a new Wii game from Ms. Teresa Long(a coworker of Gran’s), a parental care package from the Covey’s, a camera and snacks and sticker books from Granny Duck, a Radford soccer shirt signed by players from the Velat’s and Coach Roop and Sam’s soccer team, a box of women’s Tennessee Vols attire and games and gift cards from “whiney baby” and her friend, joke books from Ms. Croteau, books from the Brown Bag Book Club at Radford Public Library, a large box of wonderful snacks from the gang at all of the VSG Southwest offices, a ball toss and a Tamagotchi game from Jason’s Mama, and a NERF machine gun from Dr. Levine!!!! The nurses come in his room very slowly now!

We are so overwhelmed by your loving gestures. I look forward to reading the uplifting e-mails from the group of girls that continue to check on me via that route. Henry is counting the days until B arrives. He is so excited.

Thank you all for caring. GROW CELLS GROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Angela

P. S. Patrick just called me to tell me about the guestbook entry from Peyton’s Mom-Jennifer. Thank you for that advice. It made us both feel so much better about his counts. They haven’t mentioned monocytes yet, but I will be asking tomorrow!

Monday, April 23, 2007 8:28 AM CDT

Day +17

WBC 0.2 -no change from yesterday
Hemoglobin 7.4 -he will get blood today
Platelets are ok-he got a bag yesterday

Itchy feet probably due to a side effect of the Prograf (anti-rejection med). He slept better last night with the help of neurontin and ativan.

Dr. Kitko has has not made rounds yet this morning, but the concern obviously is the drop in the counts. I know that they jump around alot in the beginning, but I thought they would be higher by now.

I need to stay positive for him, and for me. It is hard though. It is a beautiful day here in Ann Arbor. I can't wait to get outside today for a walk.

Have a great day everybody-Angela

P.S. Patrick made it back to Radford at about 10pm last night.

Sunday, April 22, 2007 7:18 AM CDT

Day 16

White count down to 0.2 this morning
Platelets 31 and he got a bag before 8am this morning
Hemoglobin up to 8.6 -he is making his own

The rise in hemoglobin is good. Even though the white count is not rising on the lab report, he could be making white cells that are going straight to work in his body, rather than hanging out in his bloodstream. This could be the reason for the change in the counts right now. We were warned in advance of this, so it is not bad news.
For the not so good news, Henry is suffering with itching on the soles of his feet. Not sure of the source right now, but it is driving him crazy. I have scratched feet for 2 nights now!
Patrick leaves today and I will be with Henry until Thursday when Angela and B. Davis and Poppy all arrive to help me out and to cheer Henry's spirits.
So glad that you are all still praying......
Angela

Saturday, April 21, 2007 11:55 AM CDT

White count down to 0.4 today-not bad news though. The platelets and hemoglobin held, so no transfusions today.
He is up playing his Nintendo Wii with Mireille Block this morning! Edward, Kim, and Mireille surprised us last night and traveled from Chicago to Ann Arbor.
Keep praying for those cells to grow so that we can leave these 4 walls real soon.
Have a great Saturday. It is beautiful here...
Angela

Friday, April 20, 2007 8:18 PM CDT

Henry has had a good day today. Every staff member that entered his room was smiling about the increased white count. He did not require any transfusions today. His white count is 0.7 and he has felt much better today. I added 4 new photos tonight. Hope you enjoy them.
Through all of the tests and concerns over the last few days, we saw EVERY physician on the BMT team as well as his hematologist/oncologist. They all stopped by to check on us and Henry. We are very lucky to be at such a caring and competent facility. We learned this week that Dr. Larry Boxer is known as "Dr. White Cell" in the national and international hematology/oncology world. He was one of the inventors of Neupogen!
Thanks to all of you for sharing your prayers and supporting the other patients on 7Mott. They truly do get us through the long days (and nights) here. I am convinced that God gives these children the strength to endure all of this, even before these children are born.

I know that the New River Valley seems like it has a cloud over it right now, but please know that it looks like a wonderful place to us and to all of the people here that see your support of us and the victims at VA Tech. We can't wait to come home-and we are getting closer to it every day (Fran-that comment was for you )!

P. S. Patrick is coming back to Radford on Sunday night!

The Moore Family

Friday, April 20, 2007 8:25 AM CDT

I wanted to give a quick update so you could walk around smiling today, as we are.

Henry's white count is up to 0.7!

Later, we will post a photo of him wearing his Hokie colors.

Wish the donor could see us smiling today.

Angela

Thursday, April 19, 2007 6:16 PM CDT

Day +13
Days in hospital -TOO MANY

I am entering this earlier tonight since I had many of you nervous with the late entry last night. I apologize for that as I am committed to giving you all the most accurate and recent information on his status-sound like a news program?

Henry's white count on 2 different occassions today held at 0.5. This is very good news. The staff warned that it "stutters" for a few days before it steadily rises, "so don't be disappointed if it decreases tomorrow."
The CT scan and MRI were both negative. The Prograf (aka Tacrolimus) which is a drug used to reduce or prevent the dreaded graft vs. host disease, is the culprit for the priapism and the change in mental status. Unfortunately, he really needs this drug for all of this to work, so we are going to try to learn to help him manage his emotions. I also think that these 4 walls are closing in on him. At least I get to walk to the cafeteria, the Starbucks, and the bathroom many times each day. I sometimes get to go back to the apartment for naps. Something reminded me today that he hasn't seen a friend nor his brothers in more than 3 weeks. He has been in this room for more than 2 weeks. For Henry, the big socialite, this is a major change. I am going to talk to the staff a little more about dealing with this, since the medication needs to continue. On a funny note, he told Kishta, his favorite nurse, that when B visits, he and B ware going to sleep on the air bed and that I could sleep in his hospital bed!

Thank you all for your continued overwhelming support. Thanks to the Mitchells, the Wheelers, and to Jeanne Cox and Ellen Taylor for wonderful meals at the Radford house this week. Diana Joyce and Wendy Phillips spent some time with Samuel this week, while Anna Turk and her mother entertained the Moore household last night!
I am happy to report that two of our 7Mott friends are leaving this week. Madeline and Josh are going home tomorrow. We will see them soon in "clinic." Josh is a teenager who just finished his inpatient treatment to treat a relapse of Ewing's Sarcoma. Gavin recorded a song today , even with tummy pain!

Hug your family tonight for us. We thank you all for caring for us....
Angela and Patrick

Thursday, April 19, 2007 11:40 AM CDT

I am going to do a quick update this morning with blood counts. I will do a full update later this evening after Henry gets to sleep.

WBC 0.5
HGB 8.5
Platelets 55 -because he got them every 2 hours last night

The WBC has consistently been 0.5 with several blood draws this morning. We won't know if he has any neutrophils until it gets to 1.0-then they will look at it under a microscope to see that he is making all of the types of white blood cells.
The cell count is definitely rising which could be a positive sign of engraftment!

Thanks to all of you for your encouraging e-mails and journal entries this morning. I am so lucky to have friends like you all...
Angela

Wednesday, April 18, 2007 9:58 PM CDT

Day 12
Days in the hospital 24

Blood Count at 5am this morning:
WBC 0.2 up slightly from yesterday
Hemoglobin 8.4 just slightly down from yesterday
Platelets 5-down from yesterday
ANC 0 same as yesterday

The last 24 hours with Henry have been quite challenging. I am sure that we would probably have more patience than usual, but with the sadness from the events in Blacksburg, the passing of Brook Eley, and the news that poor little Gavin has possibly relapsed with leukemia, has just really bummed us. Also, I am missing Samuel and Harper Gray so much. I am tearing as I type....
Henry became extremely irritable yesterday and it hasn't changed. He has been terrible toward the staff and toward me and Patrick. He has been lying in bed all day with his eyes closed and screams at us if we talk. We noticed yesterday afternoon that Henry was having trouble urinating, mainly due to a penile erection-NO JOKES IN THE GUESTBOOK PLEASE!!![only to our personal emails :) ] This is called priapism and has been ruled to be a side effect of the IV lipids. He has had vascular studies, the IV nutrition has been stopped temporarily, and new meds were added to help reduce the erection. Do you know how hard this is to type??????
In addition, this huge change in mental status has been harder for us than the elevated temps. He is not Henry. He has had a head CT scan this evening and will have an MRI of the head tomorrow morning. It could be Prograf (the antirejection drug) toxicity which will show up on the MRI, or a brain bleed due to low platelets. The lower parameter for platelet levels for him has been temporarily raised to 50. (They ration platelets around here.) They have checked his blood count again late this evening for platelets and the nurse just told me that his WBC was 0.3! That means it is up from this morning. This bit of possible good news has lifted our spirits.
Henry is finally asleep. I added 4 new photos of all of the boys- I needed to see their faces....
Angela

Tuesday, April 17, 2007 1:53 PM CDT

Day 11
Days in the hospital 23

Current blood count:
WBC 0.1 same as yesterday
Hemoglobin 9.0 just slightly down from yesterday
Platelets 11-Thanks for those positive platelet vibes Laurie!
ANC 0 same as yesterday

We are ANXIOUSLY awaiting new cell growth any day now. Henry's temperature is ranging from 98F to 101F, so we are very happy to see it so much lower. Henry is hooked up to 7 different IV pumps. It is a little overwhelming to me, but he is not retaining fluid-his kidney function is good. His liver function is good, too. His liver is tender and enlarged when they touch it, but he never complains about it. He did not need any transfusions today, seems like the platelets from yesterday stayed in his system. He is not eating. He is drinking a little. He was up out of bed most of the morning again today. He is very chipper and much more like himself.
It's Good to be Bald! I have added new photos on the second photo page on the website-click "view photos" to see them. B Davis has had his head shaved bald and Zack Turk took the plunge with Henry on the day that he first got his hair buzzed. PLEASE-send me any of your "buzz cuts" for Henry's website and for him. His classmates and teacher wrote a book (in Windows Media Player format) for him-It's Good to be Bald! The link to it is at the bottom of the page(the Grow Cells, Grow Cells is also there.) Be ready to laugh-and also cry. You do not want to miss this-especially the last scene of the It's Good to be Bald!. It thrills him to know that they all still think of him and care for him so much. Thanks to Mrs. Patterson's Pack!
I would like to say hello to the Crew @ Mr. Wilson's in Spanish Fort, AL. They had a fundraiser for Henry this past Sunday-because they love Henry!. Going by Mr. Wilson's is a huge part of Poppy's day and Henry has made many trips with him. The men that belong to this "Crew" are wonderful as are their spouses/significant others. Thanks to all of you.
Also- a special hello to my co-workers at Pulaski Hospital and to my Carilion HH and Private Duty girls! You all have been so supportive to me during this time and I appreciate it more than you know....

GROW CELLS GROW!!!!!
Angela

Monday, April 16, 2007 4:12 PM CDT

Day 10
Days in the hospital 22

Current blood count:
WBC 0.1 same as yesterday
Hemoglobin I can't remember exactly-but he did not get a transfusion today
Platelets 5-If you know about blood counts, this is not good! HE GOT PLATELETS EARLY THIS MORNING
ANC 0 same as yesterday

We spent another night trying to keep his temperature down so that he could get platelets. The nurse finally got approval to give a dose of Motrin(it has a side effect where it consumes platelets) because his 5am labs this morning showed a critically low platelet level. The Motrin really worked. His temperature has not been higher than 101.4F today!
Finally, a day without vomiting! His body rash is gone. He now has a PCA morphine pump that has a huge red stop sign on the cord that says-ONLY THE PATIENT MAY PRESS THE BUTTON! He will not let anyone touch it either. He has had no other nausea medications while using this pump, and believe it or not, he has been more awake and lively today. The morphine pump is for the pain in the gut and throat and mouth due to mucositis. Basically the top layer of cells from the lips to the rectum has been removed by the chemotherapy and is painful. His gums and lips are swollen and his teeth are loose-even his permanent teeth. We are awaiting a consult from a dentist to check on his teeth- or lack thereof :)
He received cards and gifts from his first grade teacher, his fellow classmates, and Mrs. Arthur's second grade class. We read each and every card/letter. He got a special wrap for his head that was signed by all of his classmates and teachers. He actually tried it on for a photo which I will try to load tomorrow. He got a box from Liam Weston today, too! Thank you Li-Li. He talked to his classmates and Mrs. Patterson and Mrs. Ellerman today. This really cheered his spirits.
Another thing that cheered his spirits is that we got Gavin(www.gavinbrunin.com) and Henry our walkie-talkie radios to use to talk to each other while they are confined to their rooms. They both loved this! They say, "Over and out, buddy." Also, Madeline's Mom (www.caringbridge.org/visit/madelinethelen)wanted me to thank everyone who visited their website and left messages.
We are so happy to be going in a better direction today. Your well-wishes, prayers and support have been wonderful...Angela

Sunday, April 15, 2007 1:33 PM CDT

Day 9

Current blood count:
WBC 0.1 yesterday was a tease
Hemoglobin 7.3-get a transfusion when it is under 8.0-HE IS GETTING BLOOD NOW
Platelets 15-get a transfusion when it is under 10 or if he gets a nosebleed HE IS PROBABLY GOING TO GET PLATELETS TODAY
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

He started the day again with GI upset-upper and lower. The IV nutrition is going 24 hours now. Liver and kidney function tests are all normal. He finally got platelets after 9pm last night. The level did not bump up very much, though, so he will probably get more today. He continues with a fever-up to 105.5F last night. Yes, I really typed 105.5F! He is very pale and very weak. He even has the "chemo circles" around his eyes. He has also developed a suspicious rash. There is also an "engraftment rash" which can lead to GVHD- or not. They will watch it closely.
It is a cold and beautiful day here in Ann Arbor. We know that good things are on the way. Continue to pray for engraftment and for poor Henry who is so tired....
I am adding new photos, not to exploit him, but to let you all know how challenged this very brave child has been over the last few days. Keep sending the messages to him. He occassionally asks me to pull up the webpage to read it to him.

GROW CELLS GROW
GO FEVER GO (AWAY)

angela

Sunday, April 15, 2007 9:36 AM CDT

entered at 10:36am Eastern time

Day 9

Current blood count:
WBC 0.1 yesterday was a tease
Hemoglobin 7.3-get a transfusion when it is under 8.0-HE IS GETTING BLOOD NOW
Platelets 15-get a transfusion when it is under 10 or if he gets a nosebleed HE IS PROBABLY GOING TO GET PLATELETS TODAY
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

He started the day again with GI upset-upper and lower. The IV nutrition is going 24 hours now. Liver and kidney function tests are all normal. He finally got platelets after 9pm last night. The level did not bump up very much, though, so he will probably get more today. He continues with a fever-up to 105.5F last night. Yes, I really typed 105.5F! He is very pale and very weak. He even has the "chemo circles" around his eyes.
It is a cold and beautiful day here in Ann Arbor. We know that good things are on the way. Continue to pray for engraftment and for poor Henry who is so tired....

GROW CELLS GROW
GO FEVER GO (AWAY)

Saturday, April 14, 2007 5:23 PM CDT

entry time 6:23pm Eastern time

Henry still has not been able to get platelets. His fever has been too high. We continue to use ice packs and Tylenol and it is still fluctuating 102.9F up to 103.4F. He is going to finally have to start the "steak in a bag" tonight. He is shaking from the weakness and the fever. The nurse just had to toss a bag of platelets because they expired before we could get the fever down. Apparently, the warm body will consume the platelets as soon as she gives them and his current level is borderline abnormal-well those labs were taken at 5am this morning-so they probably are abnormally low by now. (I just told myself to quit thinking negatively!)
So, he just got a dose of Motrin along with the earlier dose of Tylenol and 3 ice packs on his body, we hope to get it down long enough to get these platelets infused.
He still has just a little bit of a stuffy nose. His lungs are perfectly clear. The surgical incisions on his ports are healed, the stitches are still in. There are no real apparent signs of infection to cause the fever.
They keep saying that this is way to early for engraftment and the accompanying fever, but you never know....

This is what Dr. Yanick aka Dr. Funny call THE DOG DAYS OF TRANSPLANT!!!

angela

Saturday, April 14, 2007 10:33 AM CDT

i am making an addendum after Dr. Choi made rounds @2:15 pm Eastern Time
Day 8

Current blood count:
WBC 0.3 (It could be the sign of engraftment!!!!!!!)we will know more tomorrow
Hemoglobin 8.1-get a transfusion when it is under 8.0
Platelets 11-get a transfusion when it is under 10 or if he gets a nosebleed HE IS GOING TO GET PLATELETS TODAY
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

He continues with a fever of 102.3F. We had to use ice packs last night to keep it under 103F. He has vomited already this morning. He is awake and watching televsion. He is quiet and no longer has the blanket over his head. He is not eating, but is thirsty. He has just a few mouth sores.
He is getting Neupogen again to boost his new white cells to grow. He is getting constant IV antibiotics, antirejection meds, anti nausea meds, anti-fungal meds, but no pain meds. (We are so happy that he is not in pain.) So far, no infections have been seen on the blood cultures.
We thought it was neat that the Relay folks cheered grow cells grow. Henry would have loved to have been there cheering too. If you can get a photo of your child who is getting their head shaved for Henry, please e-mail it to me. I am going to load them all on the flickr page. Thanks for your prayers and support. We are just anxiously awaiting for the fever to "break" and the new cells to grow! Maybe they did hear you all last night at the Relay for Life!!!!!
Happy Saturday! Angela

Friday, April 13, 2007 6:39 PM CDT

Henry continues to rest this afternoon. He is very cold now that his hair is out. Thanks to the quilt from the children at Central United Methodist, the blanket from Chet Kleppin, and the blanket from Penny Sweet we are able to keep him warm. His fever is still fluctuating in the 102.7 down to 100.5 throughout the day. They are keeping him resting with medications to control the nausea and GI upset. Dr. Choi said that Henry is FINALLY acting like a bone marrow transplant patient! The engraftment fever is usually expected later, so this fever may be a sign of infection somewhere. She assured me that there are many more antibiotics that they can use for him in the event of an infection. She said she expects engraftment to begin closer to day 14 rather than day 10, so just sit tight and wait.
Thanks to Katie the cake lady for the stickers, my Dear Aunt Cile and Uncle JW for your money filled cards, the Harley necklaces, hat and beads from Tammie and Tanya Thames! Luke and Jude sent sweet drawings and Michael Jordan trading cards too.

We showed the video from Henry's school to the physicians and nurses here and they were so impressed with the love and support from his school. So are we....

From the luckiest family on 7Mott-we love you all

Friday, April 13, 2007 9:27 AM CDT

Day +7

WBC 0.1
Hemoglobin 9.1
Platelets 21

We didn't sleep much last night. His temperature has fluctuated from as high as 103F and is currently 101.5F. He has started vomiting, no appetite, GI upset on the lower end, too. He is quite irritable which is not like him. He is in the bed and wants to be left alone. He got a box of cute wigs from Auntie Nasty, but we could not convince him to get out of bed to try them. He got a new I-dog from her friend, Melissa, which is so cute.
The staff keeps telling us that the fever can be a sign of engraftment. They usually look for the patient to have a fever and if not, they become concerned that the transplant may not work. So, if our nerves can take it, maybe this is a good thing.
Thanks for all of the support by phone, guestbook, and email. We are so thankful for you...
Angela and Patrick

Thursday, April 12, 2007 10:03 PM CDT

fever is still 102F and that is while taking Tylenol. The chest x-ray was negative/unremarkable. The IV antibiotics are going.
He is awake and watching NBA.
We took a walk in the hallway with the mask and the encouragement of Dr. Choi. We waited until the coast was clear. Little 2 year old Maddie was out there and begged Henry to walk beside her. He made it about 100 feet and turned back saying his legs hurt him.
Kishta, his nurse, who has been doing this a long time despite her youthful appearance, says that they like to see the patient's body react with a fever.
Not good for the nerves but your words of support in the guestbook are so helpful....

P. S. If this does not make sense, refer to read journal history to see the entry from earlier this evening...

GROW CELLS GROW!

Thursday, April 12, 2007 3:31 PM CDT

Day +6

Current blood count:
WBC 0.1 (his doctor has never seen one lower than 0.1)
Hemoglobin 9.3-get a transfusion when it is under 8.0
Platelets 7-get a transfusion when it is under 10 or if he gets a nosebleed HE GOT A TRANSFUSION THIS MORNING!
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

Late last night, I was changing the dressing on his chest and Gavin's mom was helping. She checked Henry's hair and showed Henry the tape trick that Peyton's Mom mentioned in the guestbook. Henry thought it was cool and pulled out most of the hair on the front of his head. He wanted to stop after he looked in the mirror. He would not allow any photos to be taken. He is very concerned what others will think about his bald head. He has had his blanket over his head all day-mainly because he is cold. His abdominal discomfort has returned as well as the loss of appetite.
He has been in bed most of the day. His blood counts are really rock bottom. He is anxiously awaiting Jonathan's arrival so they can play video games. I am so glad that he is even interested.
He spiked a temperature about 2 hours ago(2:30pm). It was 101.3F- just out of the blue. They have standard procedures when the temp gets to 100F where they take a chest x-ray, begin heavy IV antibiotics, and do blood cultures to find the source of the fever. When a child with no immune system begins to run a fever, there is essentially no way to fight back. They take it very seriously and will be monitoring him closely. They gave him oral Tylenol and it has now creeped up to 101.7F. There are children here that have gotten to 104F or 105F. My heart is beating fast as I type this. I am so glad that Patrick and I are together to deal with this.
There are not many more days until engraftment should begin. That will help to build his immune system back up to be able to fight infections.
Thanks to all of you for your prayers. We really need them right now....Angela

Wednesday, April 11, 2007 4:54 PM CDT

Day +5
Samuel, Henry's 5 year old brother, scored a soccer goal just for him and won his game last night. Henry said, "I am going to need to teach him some moves when I get back home." Ha!Ha!

Current blood count:
WBC 0.2 (his doctor has never seen one lower than .1)
Hemoglobin 9.9-get a transfusion when it is under 8.0
Platelets 20-get a transfusion when it is under 10 or if he gets a nosebleed
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

Henry continues with enough of an appetite to ward off IV nutrition. He is leaving hair on his pillow when he gets out of bed now. We thought we would go ahead and buzz it a little closer to ease the process. He has had lots of energy and continues to amaze the staff here. We have been warned that a huge drop in his hemoglobin level is imminent and that he will then get a blood transfusion. They had predicted painful mouth sores by this point, but so far, there are none. The transplant is in 3 phases. The first phase is the start of chemotherapy up to transplant day. He made it through that phase very well. Then starts the severe neutropenia and low blood counts while awaiting engraftment. During this phase, we were to expect mouth sores, fever/infection, IV nutrition, liver or kidney failure, and blood transfusions. These are all really scary things, but usually can be managed. The next phase begins with engraftment. With engraftment of transplant from a matched unrelated donor, you can expect some graft versus host disease(GVHD). GVHD is where the T cells in the donors body recognizes the recipients body as a foreign place and attacks it. The Enbrel and Prograf are supposed to be helping to reduce that. 50% of all transplant patients do not get GVHD. The other 50% are broken down into 2 groups. Mild GVHD which is a skin rash that eventually clears with steroids. Severe GVHD which affects the liver and stomach/gut and skin. This severe kind can be fatal. This is where we are going to really need the prayers! New cells/engraftment are expected around April 16th to 21st. The GVHD can begin at that time. We are no where out of the woods yet!
A few other things... The McCraws provided a wonderful dinner for the Radford house last night. My sitter, Karen said that it was delicious! We were so excited to receive a surprise lunch from the famous Zingermann's deli from the Shaffer's today-they even remembered that Gran was here. Also, we received many cards, a prized Michael Jordan trading card from Andrew Mitchell, wonderful drawings from Luke and Jude Henderson and special books from their parents.
All of this support is just wonderful. We truly are a blessed family. More than we realize....until next entry....GROW CELLS GROW...hope you enjoy the new photos...

Angela

Tuesday, April 10, 2007 4:56 PM CDT

TODAY is day 4. I guess that it was wishful thinking on my part yesterday. Counts for today

Current levels are:
WBC 0.2
Hemoglobin 10.1-get a transfusion when it is under 10.0
Platelets 37-get a transfusion when it is under 10 or if he gets a nosebleed
ANC 0

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

The appetite angels are back! He requested lunchables "just like Alyson brings in her lunch everyday." His food requests vary and keep us running to the store but if it will get him to eat, I don't mind. No IV nutrition so far. No nausea, no mouth sores, and no more painful urination.
We received a wonderful gift from Mrs. Patterson and her pack and Henry's friends at McHarg. Mrs. Patterson wrote a poem and his classroom chanted the refrain GROW CELLS GROW. It was delivered in video format where he could actually watch the faculty and students cheer him on. Patrick and I teared while smiling and Henry watched carefully and then said, "I want to go back to school!" Better get THAT on video! B Davis also called this morning to tell Henry that he and his mother are coming to visit in a few weeks. Henry could not believe his ears. B and Henry like the same sports and enjoy hoops together often. Henry received a beautiful "Book of Prayers" from the Phillips family, a tie-dyed Radford shirt from Ms. Goodman and many cards from Ms. Spiker's first grade class in Richmond. Just so you know, I am keeping each card and have been mounting them in a scrapbook. Each and every email, guestbook entry, phone call, and gift that we receive, means the world to us. We are so lucky to have all of you cheering us on.
Angela and Patrick

Here is the poem:
There are cells inside of Henry
Grow cells, Grow cells
Cells are life and he needs many
Grow cells, Grow cells
They will grow and multiply
Grow cells, Grow cells
For our special McHarg guy
Grow cells, Grow cells
They will grow and make him strong
Grow cells, Grow cells
At McHarg we cheer him on
Grow cells, Grow cells
Growing cells will help him mend
Grow cells, Grow cells
These new cells are his best friend
Grow cells, Grow cells
They will grow and make him strong
Grow cells, Grow cells
At McHarg we cheer him on
Grow cells, Grow cells
Let's go grow cells
GROW CELLS!

Thank you Patterson's Pack!

Monday, April 9, 2007 1:52 PM CDT

Day +4 Transplant day is day 0 and the protocol calls for us to stay in Ann Arbor until day 100.
Daily blood counts are a big deal so I will start to include these in my journal entry.

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

Current levels are:
WBC 0.2
Hemoglobin 10.8
Platelets 60
ANC 0

No transfusions needed today. The blood counts are exactly what they expect them to be. I had mentioned that the GI upset might be viral or bacterial and it was neither, thank God. He has had a little stuffy nose for 2 days now. His appetite is declining and this may require IV nutrition which I was hoping to avoid. He has not had nausea but is on a ton of anti-nausea IV medication.
We hope that the donor is feeling better this week. What a way to spend your EASTER weekend-recuperating from a bone marrow surgery! Henry really had the better end of that deal!
Henry had a great Easter. He has had no appetite for candy, but really enjoyed seeing the bunny. Many prior patient's families were those that provided the baskets and treats.
There has been quite an interest in Henry's volunteers. The volunteers and pre-med students and are such great people. They volunteer on their own will and seem to really enjoy the children on this unit. When Henry gets tired of us, he sneaks and opens his door and says, "I need a volunteer please."
Poppy and Mimi left today and Gran arrived this afternoon. Miss Karen (KK) and Ellen (Granny E-Henry's first sitter) are at home with Samuel and Harper. Shirley is enjoying her many visitors and probably doesn't want Beth and Patrick to ever return to Radford!
So we are at day +4. New blood cells or engraftment is expected in another 8-12 days. When the new cells start growing, we won't know if they are Henry's cells growing back or the donors cells starting to grow-we want the latter. A blood test at about +30-34 days will be able to tell if they are the donor's cells. The Enbrel shot is being given twice weekly for anti-rejection. This will continue for some time. Also, as soon as the chemotherapy stopped, a drug called Prograf started infusing. This flows constantly-24hours every day. They hope to eventually get him to be able to take this in a pill form. He will be on this antirejection drug for at least 6 months.
I will explain more about anti-rejection and engraftment in later entries as the new cells start to grow. It is called Graft versus Host disease in case any of you want to "Google" it.
The guestbook continues to amaze us. I am very committed to this journal and it has become a big part of my day. I intend to print out all of the journal and guestbook entries to comprise a memory book for Henry. Can you imagine what his children will think?
Thank you all for your continued support. I want to hear McHarg Elementary cheering GROW CELLS GROW all the way from Radford.
Angela

Sunday, April 8, 2007 9:05 AM CDT

The Easter Bunny stopped by 7Mott last night. He left goodies for every kid here! Henry is doing great this morning. Upset GI tract up high and down low, but he hasn't stopped playing!
Hope you have a great Easter and that you enjoy the new photos. http://www.flickr.com/photos/henrymoore/
An update about today: GI tract upset has totally calmed down. Platelets are 75 and dropping as expected. White count(WBC) is down to .1 and ZERO neutrophil count (ANC) as expected. Hemoglobin is 10.9. No transfusions needed today. He is out of bed and playing and has had lots of energy today.

NORMAL LEVELS ARE
WBC 4.5-13.5
HEMOGLOBIN 12.5-16.0
PLATELETS 150-450
ANC(NEUTROPHILS) 1.8-10.1

GROW CELLS GROW!

Angela

Saturday, April 7, 2007 4:41 PM CDT

Hello to all. We have really enjoyed the guestbook. I know that it is sometimes as interesting at the journal entry. I will try to explain a few of the "frequent signers": Auntie Nasty is really Auntie Vanessa-Angela's youngest sister. Henry tried to say Vanessa and it came out as Nasty-and the rest is history! As you can tell from the guestbook, she has as many friends as does Henry. Henry reminds me of her, each and every day. Regina Ann Lewis was at work in Radford Hospital on the peds unit on the first night that Henry was admitted at 9 weeks old. She took care of him many, many times and even babysat Henry for us to have a "date night" during those early months in his life. Carolyn and Don Long-they lived on third street, 3 houses from our very first home in Radford. Carolyn organized a raffle to raise money for Henry and they have been very supportive through this whole journey. Alyson Bishop and family- she is a classmate of Henry's and is very special to him. He loves to get phone calls from her. Misty Cox Henderson-she is a friend who lives in Radford and has 2 boys, and is a wonderful prayer warrior. Jenny Spedaliere is Sam's Godmother. Sharon Padgett-Jason's Mom is Angela's brother in law's mother. Anna Kate Ellerman- She is Mrs. Ellerman's daughter and was in seminary at Duke while Henry received his treatment there. She and Henry became close buds. Today was sort of uneventful, so I thought it a good time to explain how some of these guys know us.
The picture of Auntie Nasty's dog has generated quite a bit of talk today and Henry just loved it. He slept very little last night. Guess he had euphoria about the transplant. He got up early, played some games and watched Happy Feet-thanks Mr. and Mrs. Padgett. He has rested the whole afternoon. He has been able to eat some, no nausea or vomiting. He has had quite a bit of loose stool and leg pain that is relieved by regular Tylenol. His hair is a little coarse, but is still intact. The hairloss is like a "rite of passage" up here on 7Mott. Henry is actually looking forward to it so he can officially join the fraternity here.
We hope you all have a wonderul Easter. I hear that the Easter bunny comes to every room on 7Mott. We will let you know. God Bless! Angela and Patrick 9

Friday, April 6, 2007 4:16 PM CDT

The marrow transplant has just finished infusing at 5:14pm!. We are on the Eastern time zone, just like Radford. We started the day with prayer and holy communion. Henry opened his birthday presents-2 boxes of autographed goodies from Coach Beamer and a new boy scout knife from Poppy and Mimi. Shortly thereafter the marrow transplant started-it was at 10:17am. He had absolutely no side effects. He has not been in his bed all day. Three different volunteers came in to play video games with him and we also had a visit from the harpist. She visits twice weekly and plays songs while we try to guess them-our own little Name that Tune!
Now we just sit and wait for engraftment. This is not expected to happen for another 10 to 14 days. During this time frame, Henry will have no immune system. The physicians have warned us that this is when his status can change at any given minute. We know that God has taken care of him thus far and are trusting that he will continue to amaze us all.
Thank you all for the guestbook entries. We are lifted by your support.
Until next entry... GROW CELLS GROW!

FOR MANY PHOTOS OF TODAY'S EVENTS, PLEASE SCROLL DOWN THE MAIN PAGE TO THE LINKS SECTION. CLICK ON THE FIRST LINK WWW.FLICKR.COM/PHOTOS.HENRYMOORE/ or paste http://www.flickr.com/photos/henrymoore/into your browser box to go to the website.

Friday, April 6, 2007 12:38 AM CDT

The transplant started infusing at 10:17 am and so far, no complications. There is a large amount so it will take 6 to 7 hours to finish. I have added new photos on this page and on the flickr link below. you may need to refresh your browser to see them.

Seven years and 3 weeks ago we were told that Henry would not live a long life. After much personal healing, Patrick and I both decided that the life that Henry would live would be a good and fun one. Henry has touched so many people. Henry has touched his parents, his siblings and each and every one of you checking this website. You are drawn to him. Why? We cannot explain it. Henry has already saved so many people, he has made you parents hug and love your children more, and made each of you learn the power of prayer and positive thinking. By age seven, he has endured much discomfort. Rather than cower into a corner, he has fought. He has had an inner strength since birth.

Today, he was given another chance to live a long life. We, his parents, are so thankful to this unselfish donor who risked his life to have anesthesia and probably took time away from work and his family to donate. We are so thankful to you and hope that one day you will want to meet Henry.

We want to begin our thanks to God. Our church and many other churches have played a huge part in our mental and spiritual survival. We also want to thank Dr. Gehrz. He diagnosed Henry at 7pm in his small clinic in Dublin on March 14, 2000. His early diagnosis and wonderful care for the last seven years has allowed Henry to enter this transplant process in such a healthy state. The Radford Red Cross , the NMDP, and the Hendrick Marrow Program were always willing to sponsor a bone marrow drive to search for a donor for Henry or someone else in need. We also want to thank our families for dealing with our uncertainties and our constantly changing state of mind. We want to sincerely and deeply thank each of you for your genuine care and concern for Henry, his parents, his siblings, and his health care team. Your words, cards, gifts of love, and prayers are the reason for our success.

Thank you all for your support. Please pray for engraftment!

We will update later Friday after his transplant. Hopefully, we will have photos of him getting his marrow.

Thursday, April 5, 2007 10:42 PM CDT

The transplant started infusing at 10:17 am and so far, no complications. There is a large amount so it will take 6 to 7 hours to finish. I have added new photos on this page and on the flicr link below. you may need to refresh your browser to see them.

Seven years and 3 weeks ago we were told that Henry would not live a long life. After much personal healing, Patrick and I both decided that the life that Henry would live would be a good and fun one. Henry has touched so many people. Henry has touched his parents, his siblings and each and every one of you checking this website. You are drawn to him. Why? We cannot explain it. Henry has already saved so many people, he has made you parents hug and love your children more, and made each of you learn the power or prayer and positive thinking. By age seven, he has endured much discomfort. Rather than cower into a corner, he has fought. He has had an inner strength since birth.

Today, he was given another chance to live a long life. We, his parents, are so thankful to this unselfish donor who risked his life to have anesthesia and probably took time away from work and his family to donate. We are so thankful to you and hope that one day you will want to meet Henry.

We want to begin our thanks to God. Our church and many other churches have played a huge part in our mental and spiritual survival. We also want to thank Dr. Gehrz. He diagnosed Henry at 7pm in his small clinic in Dublin on March 14, 2000. His early diagnosis and wonderful care for the last seven years has allowed Henry to enter this transplant process in such a healthy state. The Radford Red Cross , the NMDP, and the Hendrick Marrow Program were always willing to sponsor a bone marrow drive to search for a donor for Henry or someone else in need. We also want to thank our families for dealing with our uncertainties and our constantly changing state of mind. We want to sincerely and deeply thank each of you for your genuine care and concern for Henry, his parents, his siblings, and his health care team. Your words, cards, gifts of love, and prayers are the reason for our success.

Thank you all for your support. Please pray for engraftment!

We will update later Friday after his transplant. Hopefully, we will have photos of him getting his marrow.

Thursday, April 5, 2007 5:07 PM CDT

1 day until transplant day!

The donor has now had his surgery to donate his marrow to Henry. We hope that he is feeling well.

As I was changing the dressing on Henry's chest today he said, "Well tomorrow is a big day. Are you going to be here?" I laughed and reminded him that I was present for his first birthday. In the transplant world, your transplant day becomes your second birthday. We plan to have balloons and a birthday cookie/cake.
He has had another great day. No need for any transfusions today. He had an Easter Egg Hunt in his room with the help of his new found friend, Jonathan. He has had lots of energy, a small appetite-but he is eating, and minimal nausea. He has a new complaint-painful urination. We will know tomorrow if it is virus or bacteria or neither. He received many cards, some phone calls, and several boxes of treats from the Stump/Sam's, the Grants, Katie the Cake Lady, the Johnsons and a new hunting game from Auntie Jen and Uncle Jason.
Patrick and I both want you all to know that the guestbook entries today were just overwhelming. We read them to Henry and we laughed, and teared. We could not do this without you all. The St. Jude Catholic church will be open tomorrow morning for any of you to go to pray for Henry. Please know that we will take prayers from ANY location. My friend said that her Mom saw a sign in West Virginia this past weekend that said, "Pray for Henry." Prayer really does work. The doctor this morning said that Henry has done better than any other child that she has had to receive a bone marrow transplant.
I am going to video the bone marrow transplant and try to get someone to help me post it on this website. I will update with new photos tomorrow. The transplant has been pushed to 9:30am as the nurses change shifts at 8:00am here and they were afraid that they would not be ready to go by the previous time of 8:30.
The transplant is supposed to be like an infusion. No pain. He may experience a "hot flash" or itching. The length of time that the marrow infuses will depend on how well he is tolerating it.

A personal message from Henry-"Hey everybody. I am doing great!"

Thanks to all of you for your support. We are finally here-we Thank you God for all of your blessings. Angela and Patrick

Wednesday, April 4, 2007 3:49 PM CDT

It's our 10th day in the hospital and it seems like it has been forever. Our scheduled "day of rest" has been very active. We had a visit from the school teacher, the social worker and the child life person showed Henry the steps of the bone marrow transplant using a doll. Fran Rooker's nephew, Jonathan, also stopped by this afternoon. He is a music major here at Univ. of Michigan and he came to 7 Mott to play games with Henry. Within 5 minutes of being in the room, they had applied temporary pirate tattoos to seal their friendship. Henry never meets a stranger. Henry had several phone calls today. He got a package from McHarg Elementary school and a special video message from Mrs. Patterson and friends. He received some cards and a box of goodies from Diane Fest and Craig and Pat Gilmore.
Henry has eaten all day and has had minimal nausea. He did not receive a blood or platelet transfusion today as his blood levels remained within the normal range. His white blood counts continue to drop as expected after the chemotherapy.
The marrow is not scheduled to arrive at the Detroit airport until late tomorrow evening. It has to be checked by the lab here at University of Michigan and prepared for the transplant. The transplant is a lot like a blood transfusion. In fact, if you walked in Henry's room while it was happening, that is exactly what it would look like- A bag of red fluid hanging from an IV pole at the bedside. It will infuse through an IV tube over the course of about an hour. The only thing different from a blood transfusion is that they will take vitals quite often and a physician has to be present on the Bone Marrow Transplant unit. It is scheduled to begin at 8:30am on GOOD FRIDAY, April 6th, which is also Popppy and Mimi's wedding anniversary. I will update the website if there are any changes with the time. The time stamp on this page is ALWAYS 1 hour before Ann Arbor time.
If you are amazed with Henry's excellent progress thus far, you should be. The nurses and physicians continue to say that he is doing "better than good." I want you all to know this because it is so important to keep praying. The next phase of prayers should be for engraftment. We want the marrow to start working to build his immune system back and for Henry's body to accept the marrow. Thanks to all of you for all you have and continue to do for us. Angela

As bad as I hated to remove the funny pillow photo, I added all new photos tonight. I also found out that the donor is not international. The marrow is just arriving late. The change in the date will not negatively impact the outcome. Please pray for everything to fall into place tomorrow.

Tuesday, April 3, 2007 7:42 PM CDT

Today was the last day of chemo!!!! Thanks to all of you for your endless prayers. He is doing really well, considering all he is going through. He has a sore bottom and chapped lips, and he tires much more easily. These, however, are usual and expected symptoms. He continues to amaze his physicians. He has had a wonderful appetite. Thank you Kathy Lillard for that wonderful advice on Cytoxan. The twice daily maalox is working wonders.
Angela's Mom and the kids had meals from the Duncan's Sunday, Robbie Nester tonight and Coach and Joanne Lineburg are scheduled for Thursday night. Henry will be sad that he misses that. He had a special call from his principal, Mr. Graham, tonight. Thanks Mr. Incredible!

Okay, here is some new information on the marrow. It is not scheduled to arrive at the Detroit airport until 8pm on April 5th. It will need to clear US Customs and then treck over to Ann Arbor, which is 23 miles West of the airport. The bone marrow transplant physician will make a decision tomorrow, but the transplant may be postponed until GOOD FRIDAY! We will know more tomorrow and will give you all the latest information. Patrick and I are now thinking that Henry's donor might be an international donor because it is arriving so late and has to clear Customs.

Anyway, Henry may need a platelet and blood transfusion tomorrow. We will know for sure when his official blood count results are received. This is not unusual and will probably happen almost daily until his marrow engrafts. Please, if you can, donate blood at the blood mobile on Wednesday at RU if you can, in honor of Henry.

Thanks to all of you who are praying. I want to say thanks to Diamond Gabriel for your special prayers and the beautiful rosaries. They are embracing his transplant countdown board. Thanks also to the Pack's who sent a box of goodies and to the Montuori's who sent money instead of an application to the Democratic Party membership. Ha!

Thanks to Mrs. Ellerman and Anna Kate for your endless calls, cards, and prayers.

We love you all and want you to know that we feel your love and support. May God bless you and may God keep the donor safe.
With love, Patrick and Angela

Monday, April 2, 2007 4:33 PM CDT

Another great day today. The appetite angels were hovering over Henry's room all day. Today, he has eaten 2 orders of bacon, waffles, 2 hot dogs, and popcorn. Can you believe that he declined McDonald's hashbrowns this morning? They say chemotherapy changes your tastebuds, so maybe our van can learn to avoid every McDonald's that it sees! He has one more day of chemotherapy. YEAH! The real effects of the chemotherapy will happen soon. The prediction is hairloss, severe nausea, and pain. He worked with the hospital schoolteacher today and she was very impressed with his math skills-go Mrs. Patterson. The doctor also asked if his physical therapist had stopped by. He pointed to me and said she's right here. I said no way! They routinely order therapy for the children since they are usually in bed and weak by this point. We'll see what his "official" physical therapist has to say about his activity level. He continues to experience nausea, but it is usually relieved with antinausea and anti-acid medications. He has had no pain today and has been more active than in the last 2 days. He is back to all smiles.

Several of you have asked about the day of prayer that would occur on transplant day. Henry's transplant will ironically happen on Holy Thursday. Kathy Kleppin and Lori Mitchell talked with Father Patrick and here is what I know: Thursday night's 7:00 p.m. mass at St. Jude's will be offered for Henry Moore. Following the mass, we will have four hours of Eucharistic adoration 8:00 p.m. until midnight. This means that the consecrated Eucharist will be present in the church for folks to come and pray. There is a signup list to make sure someone will always be in the church during these hours, but folks can come even if they are not signed up. This time will be dedicated to pray for those who are sick - Henry and John Dalton would obviously be the focus for many. Fr. Patrick also said that if the need exists we can keep the church open the entire day for prayer. Please email Kathy Kleppin at kfkleppin@jchs.edu or wendyphillips@suddenlink.net if you have any questions.

As we get closer to transplant day, we want you all to know that Henry's donor was probably tested at a marrow drive for someone in need of a transplant. We are thankful for the National Marrow Donor Program and know that many of you are already on the registry. We know there are some that have not been able to join in the past for various reason and therefore we want to let you know that Radford University has added Marrow Testing to their bloodmobile April 3 & 4, from 10am-4pm, Heth Center Ballroom. This is in Honor of Henry - Be a Hero for Henry! We are now realizing that blood and platelet donation is a huge part of the marrow transplant process as well. I hope that if you are already on the registry, that you will now consider donating blood on Thursday in honor of Henry.

Sorry for the long entry. Thanks for all of the hilarious guestbook entries. We truly love to read these each day. Until tomorrow....Angela

Sunday, April 1, 2007 6:46 PM CDT

Today has been a pretty good day for the Moore boys (and Moore girl). I was so glad to see my "best friend in the whole wide world" (I have three best friends, including Samuel and Harper.) Today was Henry's 6th day of chemo and he has had an upset tummy most of the day. No pain in his limbs, so it was still a good day. He seems to wear out quickly after basketball or playing video games, but after a rest, he is ready for more. He asked me if I was going to get a haircut like his. He is looking forward to being bald. Wish I was. My hair is going in that direction, whether I like it or not.

He loved April Fools Day. Henry waited for me (Patrick) with a loaded water gun as I stepped out of he bathroom from my shower. --Soaked again! He has great aim, even with a water gun. He soaked the nurses and some of the other kid's Moms. I won't tell you where he shot them, but it was "above the belt and below the neck." Where does he get that? He is so strong, and apoligizes when he is sick or has to call for a nurse. He loves pushing the "nurse call button," and have someone immediately appear.

Getting mail and reading your entries on the guest journal are a highlight of our day. I appreciate so much those of you who are checking on my Mom. I love her dearly, and worry that she won't understand why Beth and I both have to be away now. Thanks also to those of you who check on Samuel. This is harder on him than most realize. He worships Henry and knows something difficult is going on. He doesn't really verbalize his fears, but they are there. Angela's mother, "Gran," is in Radford now with Sam and Harper. It is a relief to know she is there giving them lots of love along with Miss Karen and Miss Samantha. The giant card from Coach Mike Roop and the other coaches and kids was a real treat. The coach also sent him a Soccer team t-shirt (#1, of course) and he loves it.

Only two more days of chemo and then a day of rest. A "day of rest" is a oxymoron, because these are still so many things to do. The big day is only four days away. Poppy and Mimi will be here in two more days. We can't wait for them. Keep praying for us and the other sick kids here. Don't forget the Donor, as he is the answer to 7 years of prayers.
My first journal entry, Patrick

Angela here now- I am so impressed with Patrick's entry!
God Bless!

Saturday, March 31, 2007 10:13 PM CDT

Sorry for the late journal entry tonight. Henry had a good day until late this evening. He had to officially start using the "barf pan". He is suffering with limb pain which is a side effect of the mesna which he has to take to protect his bladder from being burned by the Cytoxan. This new chemotherapy is very hard on the body. It will completely clean out the marrow in the bones to prepare his body to accept the new marrow. He definitely appears weaker and more pale this evening. During the 4 days of this chemotherapy, he will need to urinate every hour during the day and every two hours at night to empty the chemotherapy/urine out of the bladder. On top of the pain associated with taking the drug, this whole urination thing is very tiring on the patient and the caregiver. I am back at the apartment tonight with Faye. Patrick wanted some time alone with Henry. Henry woke enough to play an April fool joke on his Dad and gave out water guns to the other patients on 7Mott so that they can shoot the nurses and doctors tomorrow for April Fool's day. I hope that I find him feeling much better tomorrow. The Radford American Red Cross sent him a package of jibbitz to put on his crocs and to give to his favorite nurses for their crocs. What a cute idea. We see the other patients on the unit and we know that we are blessed to have each and every one of you on this journey with us.
May God bless the donor and keep him safe.
Sincerely, Angela

Friday, March 30, 2007 5:09 PM CDT

T minus 6 days until transplant.
T minus 1 day until Daddy arrives!
Happy Birthday to Shirley today. Fran Rooker brought her beautiful forsythia and some treats from Sonic and she was able to talk to Henry today. She had a great birthday. Samuel visited with the Duncan's and the Turk's today which made him feel special.
Henry had another good day. He talked to his McHarg classmates which truly lifted his spirits. He was able to talk to Mrs. Ellerman last night. He received a sweet package from Ms. Wendy Phillips, his homebound teacher, and another card filled with dollars from his friend Alyson's grandmother and her friends. He really does enjoy all of these gestures to help him through this journey. He continues to amaze the doctors and the nurses. He has small phases of nausea but no real vomiting. He continues to eat small amounts of food, especially if it comes from McDonalds! Tomorrow begins the Cytoxan (another chemotherapy drug) which will have different side effects. PLEASE pray that things will continue to go well.
Today is somewhat a sad day. Dr. Yanick, also known as Dr. Funny, finished his 1 month of inpatient service on 7 Mott. Dr. Choi will now start her one month of duty or should I say torture from these funny kids. Eleven West helped us to get Dr. Funny a personalized shirt to remember Henry and also printed some "Be a Hero for Henry" T shirts for the 7 Mott nursing staff. Thanks guys-we love you.
I do have to say that I couldn't get to sleep last night and my entire thoughts were on Henry's donor. I have had the opportunity to speak with two other Mom's this week that have donated marrow. Both say that the Neupogen injections are quite painful. (The donors take the Neupogen shots prior to the donation so they will have plenty of stem cells to donate.) Let us all remember that none of this would be possible without the donor.
I am going to leave all of the new photos up for a few more days. They are too funny to remove.
Thanks to all of you for your overwhelming care for our family.
Angela

Thursday, March 29, 2007 9:10 PM CDT

T minus 7 days until transplant day April 5th
3rd day of chemotherapy
Again, he had a better day Wednesday. Some nausea, but no vomiting and he was able to keep down some food. He has not lost any weight. They had to increase the chemotherapy dose today so that he would get enough to kill the Kostmann’s cells. He is a little more nauseated tonight but is really doing well. The chemotherapy will switch on Saturday to a different drug and it will be a dose daily for 4 days.
His mood was helped greatly by the arrival of 2 marshmallow guns from Jay Clark and the gang at the therapy department at Pulaski Hospital. Henry shot marshmallows at the doctors, nurses, and the Michigan athletes tonight. They all loved it!
Patrick, Samuel, and Harper and the sitters had dinner from First Christian Preschool on Tuesday night and again tonight from Ms. Regina Ann Lewis. This really helps so much. I know there are many of you dropping off things at the house as well as continuing to visit Shirley and that means so much. Patrick will be here on Saturday for 3 weeks and that is when Shirley will need it the most. John and Beth will also be out of town in Charlottesville for his last week of chemotherapy next week. Henry has gotten several calls and that has really helped. He can have healthy visitors (adults) in his room now and always. This week and early next week will be his best immune counts and they will drop during and about 2 weeks after the transplant. He will be wearing a mask at that time and will continue to be in his room with a special air filter to keep any particles from getting into his lungs.
I sure do miss all of you . Your cards, calls, and guestbook entries sure do mean a lot. The doctor today said that Henry is doing really well for how much chemotherapy that he has had. The prayers are really working!
Make sure that you look at all of the new photos on the view photos link on this webpage. Angela

Wednesday, March 28, 2007 4:06 PM CDT

Henry had a much better day. I am thankful, because last night was hard. Lots of painful urination and abdominal pain. He had to have a small dose of morphine to get comfortable enough to get to sleep. He told Dr. "Funny" (which is what he has named Dr. Yanick) that his stomach was "busy" last night. I thought that was really cute. Kids have a way of dealing with things and I am so amazed at how positive Henry is being. It is really helping me through it. He met a friend named Gavin who is 7 years old. They have bonded. They wanted to have a sleepover and it was hard trying to explain that they could not be in the same room. Henry reached out to shake his hand when they met and that was really a no-no, but I didn't scold him. I just got the alcohol and cleaned his hands without him realizing what I had done. They are keeping him isolated from the other children on the unit right now so he doesn't get any germs. It is sort of a "reverse" isolation. Anyway, that is cutting into his need to entertain others and therefore Faye and I are getting the daily entertainment. He desperately wants visitors. He will name certain folks from home and ask when do I think they will get here. It breaks my heart. This is really going to affect him socially. I hope that we can all keep him occupied and if anyone feels the need to visit, please just say the word. Take care, Angela

Tuesday, March 27, 2007 2:22 PM CDT

As you can imagine, Henry is the king of 7 Mott. The doctors all just joke right with him and he loves it. He had a knock- knock joke ready for Dr. Levine and shared it with him today. It goes, "knock, knock"- "Who's there"- "Wa"- "Wa-who?"- Well, Dr. Levine just giggled and giggled since he is a Wahoo! Henry gave him a UVA cap and he had Henry to autograph it. And of course, Henry had to tell him about his autographed VT cap from Coach Beamer.
Last night was real hard. Henry had to take Dilantin medication orally at 8pm, 10pm, 12 midnight, and again at 6am. The chemotherapy (Busulfan) started infusing at 6am and there have been multiple blood tests to see how well his body is absorbing it. The Busulfan will be once daily for 4 days. It takes 4 hours to infuse, but Henry is still hooked up to IV's after it is finished. He is not liking being tied down. The dilantin has him a little dizzy and dazed so the doctor is going to reduce the amount that Henry is taking. The level of Dilantin in his system is in the upper portion of normal range today, so they feel that they can adjust the dose down so he isn't so dizzy. He has had absolutely no appetite today. He won't eat, but he is playing. He is not nauseated. He has experienced some discomfort from the surgery yesterday and Tylenol seems to be helping with that.
The preschool did dinner tonight for Patrick. The Plott's prepared a wonderful dinner on Sunday. A group of children from our church made blue Henry ribbons and sold them. They raised $200 for Henry to spend on toys. He is so excited about that. Thanks to all of you for your inspirational messages and your prayers. I am looking forward to Patrick's arrival on Saturday to help me stay strong. We are a good team. Granny Duck-aka Faye- is having a great time helping out with Henry. She might be retired, but those nursing skills are still sharp! Love, Angela

Monday, March 26, 2007 8:13 PM CDT

Sorry for the late update. I cannot seem to get my password to work in Henry's room. Henry did great with surgery. He go to his room at about 3pm and by 4pm he was playing hockey in the hallway with the 7 Mott staff, including the pediatric surgeon who installed the lines! Henry will get Dilantin tonight because the Busulfan has a small side effect of seizures. He is getting antibiotics, anti-fungal medications, and medications that will protect the liver from the harsh effects of the chemotherapy. The Busulfan(chemotherapy) will go for 4 days then another chemotherapy drug-cytoxan- will go for 4 days. He is getting Enbrel injections which is a rheumatoid arthritis drug. Univ. of Mich. is one of 2 hospitals in the US that is participating in a study for the use of Enbrel with bone marrow transplants. There will be only 80 participants and Henry is one of those. It is shown to reduce the chances of graft vs. host disease. I will explain more about the GVHD later. The reality of it all is hitting me and Henry too. We did get to order out chicken nuggets and fries, so that cheered him up. I am going to be as candid as I can with the updates so you get the real picture of what is going on up here. Right now, all is good. Thanks to all for your prayers today. They helped and this is one step forward. Take care, Angela

Sunday, March 25, 2007 9:36 PM CDT

We had an uneventful drive to Michigan yesterday. Well by that I mean no traffic or weather problems. Henry, on the other hand, was non stop entertainment. He made me and Faye laugh for hours. He is so funny. I dreaded leaving the driveway and we were on the road for an hour before I realized that I didn't even cry when we left. Henry is truly an unbelievable child. When we arrived to the apartment we had lots of cards from last week. Thanks to everyone for those. We had one small box that had a return address from the VT football office. When I said that, Henry almost jumped out of his skin. He could not open it fast enough. It was a personal note from Coach Frank Beamer and a signed hat. I am not sure how he knows about Henry, but thank you Coach Beamer and the folks that helped to get this for Henry. It really cheered him and I know it will be cause for much banter between Henry and his Michigan health care team.
I found a catholic church for mass this morning and then we had lunch at Applebee's just around the corner from the apartment. Henry shot hoops and we visited Meijer for some additional apartment necessities. We are all packed for the hospital tomorrow.
Henry has to be at the clinic at 8:30 am for bloodwork. He has to be at pediatric surgery department at 9:30 am and surgery is scheduled for 10:30am. His surgery is to have 2 central lines placed in his chest. These are plastic spaghetti noodle type IV's that are surgically implanted. They will be removed after the transplant. The reason for these is so that he can get IV medications, IV nutrition, and the nurses will use the lines to draw blood. The biggest reason for the IV's is that the bone marrow will be infused into the lines (on April 5th) and will go directly into the bloodstream and will go directly to where the defective bone marrow has been removed by the chemotherapy. Sorry if I am getting too detailed, but I feel the need to explain this to you as best that I can. He will go from surgery to the bone marrow transplant unit. I will put his room number on the website when I get a chance to update tomorrow evening.
My sister in law, Beth, reminded me that Henry's transplant day is Holy Thursday. I had been so caught up in everything else, that I had not even considered this. How neat is that?
Thanks to all of you for checking in on Henry. Please say a prayer for him tomorrow. Say a prayer for Patrick as he is not here yet and will be so stressed until he knows Henry is okay. Say a prayer for me for strength to keep it together and that I will have all of the right answers for Henry. He is quite inquisitive!
I promise to update tomorrow evening. Angela

Thursday, March 22, 2007 7:39 PM CDT

All new photos added on the Flickr link below and on the view photos link at the top of this caringbridge webpage. The plan is for admission on Monday the 26th for the placement of the 2 central lines and then up to 7 Mott the bone marrow transplant unit. His bone marrow donor has been cleared for surgery and our insurance FINALLY approved the transplant- today.
We hope that you enjoy the photos. Henry went back to get a fresh haircut today as it had gotten too long for him already! We had a wonderful dinner from the Rehak's tonight and delicious brownies for dessert from the Weston's.
Oh yes, Henry passed the GFR test with excellent kidney function. He is in the greatest state of health to be going into the transplant. Yes we do feel your prayers and support. Thanks to all of you.
The Moore family

Wednesday, March 21, 2007 8:19 PM CDT

I am going to do a quick update. I changed the main photo and plan to add other photos tomorrow. We are in Radford until Saturday. Henry, Granny Duck (Faye McKinnon) and I will leave Radford around 9:30am this Saturday morning. We will drive to Michigan and have a day of rest before surgery on Monday the 26th. The surgery will be to place 2 catheters in his chest that will be used to draw blood, administer medications, and where the marrow will be infused for the transplant day(he will be awake and in his own room). He will go from recovery to his room where pre-chemotherapy medications and fluids will be given. I will update more as I get information from Michigan. Take care and thanks for the great meals this week from the DeLuca's and the Reuwers. The Vaccarro's and the Shaffers were last week. I know that Vicky Harvey went to the nursing home to visit Shirley. I know others are helping and may not have mentioned it to me and you are all special to us as well. Sorry for the late update. We had a birthday dinner with John and his family tonight. Signing off.....Angela

Saturday, March 17, 2007 8:48 AM CDT

Sorry to leave you all hanging last night. I couldn't quite do an entry as we were on the road all afternoon. I am sitting in my own living room with my entire family here. It feels great. Henry finished his last test yesterday. We don't have the results of the GFR test yet, but all of the other tests have tested in normal range. The bone marrow biopsy did not show a conversion to leukemia and the CT scans were all normal. Realizing that we would be in Michigan with no tests scheduled, we asked whether it would be possible to come home for a few days. Dr. Levine expedited the bone marrow test and gave us the ticket to a few more days of freedom. We left the hospital like a bolt of lightning and drove through snow and ice to get home by 1100pm. Both Samuel and Harper hugged their older brother and kissed me and they have been bonding all morning. I am to check in with Dr. Levine's nurse on Wednesday morning to let me know when we should plan to be back in Michigan. I have set up home bound school with Mr. Graham- thanks for your help at nearly 5pm on Friday. Wendy Phillips will be Henry's home bound teacher as I am struggling with being caregiver, Mom, and teacher. The first two are much easier than the last.
I will not post again until Wednesday. We want to enjoy the next few days as a family. I just want you to know how fun it is to read the guestbook. I chuckle, Henry cheers, and sometimes I tear. It is so special to get messages from childhood friends, from people we know and some we may never meet. Thank you all for your support and encouragement. Angela

Thursday, March 15, 2007 7:20 PM CDT

We all slept well last night. We woke to 1 inch of snow though. It did not stick to the road as we have had warm temperatures over the last few days. The apartment is a 2 bedroom, 2 bathroom. It has only one television which is causing a little trouble when Poppy wants to watch FOX News and when Henry wants to be on the Playstation 2.
We will need to be at the hospital at 8:00 am in the morning to try to do the GFR (kidney function) test again. The infusion clinic is going to put a heparin lock in his vein before the test so that should make it successful. We all needed today off from the hospital environment. We drove to Dearborn to the Henry Ford Museum and saw the IMAX movie there about saving the marshlands/wetlands in lower Louisiana. It was a neat movie. The museum was very impressive. We visited the factory floor where the Ford F150 was being manufactured today. My dad impressed the ticket counter with his Ford racing membership card in that he was a charter member-surprise any of you? He also proceeded to tell the gentleman just how many Fords he had in his repertoire (old, new, business, and personal). I don’t even know the number. The gentleman awarded us a nice discount and after today’s visit, I am glad to say that I own a Ford and I always will.
I want to take time to that all of the wonderful volunteers that are bringing meals to the house, taking my children out for playdates, and visiting Shirley in the nursing home. Laura Turk is a saint to be organizing all of this and the Moore family really appreciates all of your help. I know that the younger boys enjoyed Joe and Miss Gail tonight. Thanks again and I will post tomorrow evening. Angela

Wednesday, March 14, 2007 7:56 PM CDT

Today started off rocky. The GFR test measures how well the kidneys move a radioactive through the bloodstream. To do that, the dye cannot seep out of the vein at the entry point in the arm. It did so the test had to be stopped. This test has to be completed prior to chemotherapy so it was rescheduled for Friday. The dye really burns and Henry started crying immediately. He calmed quickly and said he was not doing that test again! My thinking cap must have been on because I immediately went to the outpatient surgery check-in to see if there was any way that his bone marrow biopsy could be moved to an earlier time slot. He is required to have nothing by mouth for this test and by 9:15 he was getting hungry. They jumped hurdles and made it happen for him. He was a trooper and was up and out of the bed in recovery in less than an hour. We made our way to Otolaryngology Department where he had a hearing test and another test to determine whether there was any increased ear drum pressure. Both of the ear tests were normal. I would have bet that he was deaf-if you know what I mean. We finally got him to Wendy’s (inside the hospital) and got him chicken nuggets and fries. I then tested my luck to see if the Cardiology Department could do his echocardiogram and EKG. They surprised me and scheduled him at noon. We finished up at about 1:45 and we were able to get to apartment by 2pm. It was not quite ready so we visited Meijer for a few apartment necessities. This area does not have Walmart. Meijer is about the same except that it has Starbucks. There is a Target nearby as well. We are now in the apartment and happy to have more space. No tests are scheduled for tomorrow so we are hoping to do something outdoors. Henry has about had it with all of the testing. It is supposed to snow this weekend-Yuck!
I do not have any of the major test results yet. The bone marrow test results will take the longest. Obviously, they will be looking for any transition to leukemia. Let’s pray that they will only find the Kostmann’s defect. Thanks to the Greco’s for taking Samuel to Nikki’s soccer game. Harper is fine thanks to MeeMaw and Karen.
Thanks for checking in on us. The messages in the guestbook are awesome. Angela

Tuesday, March 13, 2007 9:23 PM CDT

Henry had another full day of testing today. He continues to WOW everyone that he meets. He tells them all about his school friends, teachers, and his girlfriend! I will leave her name anonymous, but I bet she is smiling now. He tells all of them that he is the NEXT MICHAEL JORDAN of Radford. Coach Roope, you have no idea what an impact that statement made on Henry. I know that it has given him courage and that is what he needs to get through this. He started this morning with a CT scan from head to pelvis with contrast dye. He held perfectly still and did not require sedation which is quite unusual according to the pediatric radiology tech. Next, we met with the social worker and she is mostly for my assistance. There are child life specialists that help with the pediatric patients. Next we met with the bone marrow transplant physician. Henry gave him a very hard time about being a Wahoo. They passed jokes back and forth and he immediately stated that Henry would have all of the nurses on 7 MOTT(the transplant unit) wrapped around his finger. I continue to let him be Henry even though I shake my head and wonder where he gets it?
Maybe these entries are too lengthy but I do believe that you all deserve to know what is going on up here. I will try as best as I can to explain what is going on and hope that will help guide your prayers.
So tomorrow we will start early. He has to be at the hospital at 7:45am. He has a bone marrow biopsy and the GFR (kidney) test. He will be under anesthesia and he is very good at it by now. Somehow, with a scheduling problem, we missed the heart, hearing, and maybe a liver test today. I did not get the schedule and I feel terrible about it. They are going to try to add these tests to tomorrow afternoon. We hope to get into the apartment tomorrow evening and that will help to get up settled in some. This hotel room is getting small for our things.
His admission date will be on March 26th. Chemotherapy will start on the 27th and will be every single day for 8 days. This is scheduled to end on April 3rd. April 4th will be a day of rest and the transplant will happen after 5pm on April 5th. The donor is a 49 year old male. We have no idea where he is from and will not be allowed to meet him until one year after the transplant and that depends on whether the donor wants to meet Henry. I am sure that the donor knows that he is donating to a 7 year old boy but that is all we know. The donor will be donating on the morning of the 5th, the same day of Henry’s transplant. We will need to make sure that we are all considering the testing and changes in his life right now. I hope that you will also pray for him and for his family.
I am going to bed. Harper has been standing at the top of the steps (Henry’s room is in the basement) screaming for Henry. Samuel called Karen to come and get him at 9 or 930 from the Cosmato’s. (Thank you Patty and Charlie) I am here missing them but taking good care of Henry. Good night, Angela

Monday, March 12, 2007 8:57 PM CDT

We started out today at the Kellogg Eye Center for an appointment with the opthamologist. You are probably wondering why that, and so did I. Apparently, during the time that the donor's cells are engrafting there is a problem called Graft Versus Host Disease(GVHD). This can be a really big problem if your transplant doesn't work and your body rejects the donor's marrow. Even if your body accepts the marrow, you still have a small episode of this which is characterized by a rash. GVHD can attack the lacrimal ducts of the eyes and cause itching and dryness so this pre transplant exam was to see if there are any pre existing problems. Henry does have mild dryness. He has perfect vision. He was prescribed a humidifier, Restasis, and sunglasses when outside. He will continue with the Restasis through the transplant and will be followed by the Kellogg Eye Center after the transplant. Henry also had a pulmonary function test today. This test was about 45 minutes of specific breathing into a machine. The tester said that the patient usually has to be 8 years old to be able to follow the instructions and participate for an accurate test, but Henry proved them wrong. He passed all of the tests in the normal range. Tomorrow he has a CT scan of the chest, abdomen, and pelvis at 1100am but we have to be there at 9am. We meet with Social work at noon and with the bone marrow transplant physician at 1:30pm. Wednesday will be a bigger test. It is a GFR test which studies the kidney's ability to filter plasma/blood. This is a 5 hour test! We hope to get to our apartment by Wednesday night. They are going to clean it tomorrow. I put the address at the top, but please hold any mail until we are actually there.
Samuel did well back at school today and is with Nate Cosmato tonight. They are going to Chuck E. Cheeses tomorrow. Harper is fine and happy when he talks to me on the phone. Thanks to all of you for your support. The Moore's

Sunday, March 11, 2007 7:43 PM CDT

We are here! The weather today was perfect for driving. The temperature has hovered around 47 degrees. We drove through West Virginia and then into Ohio where we discovered the Pro Football Hall of Fame. After some bantering from Henry that he wasn't getting out of the van again unless there were toys involved, he beat us to the front door when he read the sign where we were. We didn't have long so we enjoyed some exhibits and took in the Game Day movie in the stadium style theater and his testosterone was flowing again. He found the gift shop and picked out a Michael Vick Falcons jersey and a Washington Redskins wireless control for his Playstation 2. I will try to get photos posted later this week. We have an 8am appointment with the opthamologist and a 3 pm appointment in the pediatric pulmonary lab tomorrow so we need to get some rest. Thank you Radford and all of our other friends for a wonderful send off. We felt your embrace and that makes this journey a lot easier. Please check on my babies in Radford. Angela

Friday, March 9, 2007 10:36 AM CST

I have been trying to put into words what exactly happened last night. I really can't eloquently do it. I know that Patrick, Henry, and I left St. Jude's church with the most peaceful feeling that we have had in the past 7 years. The church was filled to capacity. We would glance around and see faces that we had not seen in some time, but were so comforted by their presence. We had many phone calls and emails and drop ins/cards prior to the service from people who were there in spirit. We felt so loved last night. Father Patrick, along with Father Paul presided and made us feel so special. Father Patrick wanted the service to be our service, and it was. The musicians were wonderful. Most of the St. Jude choir showed up to sing. Alice and Dylan sang "I Believe I Can Fly" which is so Henry and was so fitting for his personality. Hope, his piano teacher played the piano. Little 7 year old Blake Hall read from Mark 10; 13-16 which is "Let the children come unto me". He was so cute in his coat and tie. I called Anna Kate Ellerman yesterday morning in New Jersey and requested her to speak at the service. I gave her the scripture that would be read and she preached it 3 times in her car and said it just came to her. She gave the most beautiful sermon urging us all to have faith like a child. Wow, the whole church was so moved by her. Patrick (Moore) followed her with a heart felt thank you to all present in person and spirit. While he was tearful, he reminded us that they were tears of joy. Henry ran up to the altar to comfort him and all was well after that. Father Patrick, Rev. Hendrickson, Father Kris Kramer, Rev. Gina Rhea, and Rev. Anna Kate Ellerman all layed hands on Henry while the entire congregation extended their hands in prayer. Henry stood the entire time while being comforted by Rev. Rhea and Anna Kate. Henry was just perfect! He never was afraid at all. He helped Father Patrick lead the Lord's Prayer and after a final prayer, the service ended with the hymn "How Great Thou Art". Laura Turk was in the back of the church for almost an hour with people signing up to visit Patrick's mother at the nursing home, meals for Patrick, Samuel, and Harper, and sitters for Sunday afternoons. I am going to add Laura's email address on the webpage so that you can contact her if you want to help out too. As you can imagine, we felt as if we had the best "send-off" ever. We feel energized. We have faith. We know Henry is going to be the hero that he claims to be. Thank you all for all that you are doing. As Patrick (Moore) said many times last night...."We felt the love"......may God bless all of you. The Moore family

Wednesday, March 7, 2007 7:09 PM CST

Well, it is finally hitting all of us. While we are very happy and feel lucky, we know that our lives are going to change for a while. I have been sad, silently. I have been trying to take in every hug that I can from Sam and Harper. Last night, Samuel asked about the presents that Henry was getting. I explained that everyone was trying to make Henry feel better since he was going to be away from his friends and in the hospital for a while. Samuel just started crying-hard. I tried very hard not to cry, but it really broke my heart. I tried to explain it in his terms and he seemed to calm down. He picked a book, we shared hugs and kisses and off to bed he went. He is much better today. Patrick and I both are just in a daze. I am just amazed at how much people care for our family, and our son. We really are lucky to have all of you in our lives. The news did a story tonight and I have added a link to it at the bottom. Henry is calling his cat the "movie star" now. It is so funny.
We are excited about the healing service on Thursday. Anna Kate Ellerman will be able to get here from Princeton and we are truly excited about that. She was with us at Duke 7 years ago and is Henry's buddy and angel. Blake Hall, a friend of Henry's from church will do one of the readings. Alice and Dylan Armentrout will sing a duet. Patrick is going to speak. Hope, who is Henry's piano teacher will play the music. Mr. Carl Derfler will do some of the vocals, as will Alice. Laura Turk will be there to get phone numbers of those who want to do meals, help with the kids, and go to visit Shirley (Patrick's Mom) at the nursing home. Father Patrick has been so wonderful with us. Many others keep asking what they can do to help out. We feel the love and support from all of you. The entries in the guestbook are so moving and helpful to us. Thank you all. Angela

Monday, March 5, 2007 7:54 AM CST

Sorry to have waited so long to give an update. When Henry gets admitted to the hospital for the transplant, I will be updating this page on a daily basis. Right now, I am trying to spend time with the younger boys as well as getting ready to leave the house for an extended period of time. I have hardly had the time to focus on what to say.
I do want to thank everyone for the kind messages in the guestbook as well as the private ones sent to our email box. Patrick and I check these each day and that is what helps us through this. Heather Bell with the Radford News Journal and WSLS newschannel 10 both covered stories on Henry this past weekend and did a very good job. We had lots of phone calls and messages about how neat both stories were. You may click on the link below to see a photo and read the article in the News Journal.
We plan to leave for Michigan by car sometime on Saturday the 10th. My father, Henry and I will drive the van so that I will have transportation while I am there. Henry has an appointment at 8am at Univ. of Michigan on Monday morning with the opthamologist. That will be the first of the "head-to-toe" examinations to make sure that he is ready for the transplant. Right now, his admission to the hospital will be on March 26th. Transplant day will be April 5th. Both of these dates are subject to change. I will definitely keep you all posted if they do. We are going to have a "day of prayer" for God's will on the transplant day. I am not sure yet if this will occur at a location or just privately in your own homes/spaces-more to come on this.
All are welcome at the healing/annointing service for Henry at St. Jude Catholic Church at 7pm this coming Thursday, March 8th.
Thanks to all of you for your wonderful offers to help with the younger children. We are so lucky.....The Moore family

Friday, February 23, 2007 8:48 AM CST

I talked to the transplant nurse this morning. She has to submit some dates to the marrow people (NMDP) to coordinate with the donor. She usually gives a first and second choice and says “week of” rather than a specific date. She said the admission date fluctuates a day or two based on needs of the donor and patient. She is going to give the Marrow Donor Program some dates today and will know a date range by next week.
The nurse said to have Henry in Michigan on the 12th of March for testing that week. The testing will be to get a baseline for all of the major body organs (lungs, liver, kidneys, etc.) He will also have teeth/gums checked and a full body CAT scan to check for any “hidden” infections. She said that admission should be very soon after the testing is completed if all is in normal range. The admission date has to be coordinated with the date of the donation of the marrow from the volunteer donor.
She said that Henry when he is admitted, he will get 6 days of chemotherapy and this is usually just routine, but on the 7th day of admission he has a day of rest and on the 8th day will be transplant day. The days then get numbered and the transplant day is DAY Zero. She says this day is usually very hard because the chemo is starting to affect the patient and the sickness from that is hard. She said transplant day is day zero and that days 0-14 are the hardest. That is when Patrick will definitely need to be there. I am not sure who wants to be present on transplant day but Patrick and I both will be there. Harper and Sam should be home going through normal day to day activities. Karen will keep her normal routine during the day, but we will need help with people staying at night. Whether it is one of my parents or any of you out there reading this that will want to volunteer to stay, just let me know by email. Patrick will come back to work/home when Henry gets through that 2 weeks of sickness and he and Karen can manage Harper and Sam at that time. I will be in Michigan with Henry and could benefit from friendly visits if anyone is interested. Patrick will probably fly back to Michigan on the weekends and any help with the Harper and Sam (while Patrick is in Michigan) will be appreciated.
For those of you far away and don’t really know about our families, I will try to do a quick explanation. Patrick’s father is deceased. His mother has MS and is blind and bedbound and resides at the Radford Nursing home. Patrick’s sister Beth is helping her husband, John, through chemotherapy with his recent diagnosis of lymphoma. Patrick’s sister Callie lives about 1 hour away. My Mother and her husband live in Birmingham, AL and my father and his wife and my 2 sisters live in the Mobile, AL area. My family is willing to help where they can. They are all employed and will help intermittently and with a little notice. Patrick and I are lucky to have many close friends that want to help us out. We just need you to know that we do not know any specific dates of our needs. I just wanted you all to get an idea of what our needs might be so that you can be thinking of where you might be able to help. I am doing this because I have gotten so many emails and calls about people wanting to help, they just don’t know what we will need. I don’t know what specifically we will need either. I just know that it will all fall into place because you are all so special and helpful and will make that happen for our family.
Thanks again to all of you. Remember the church service at St. Jude on March 8th. Angela and Family

Thursday, February 22, 2007 8:13 AM CST

ALL NEW PHOTOS ADDED!!!! click "view photos" above and also click on the flickr link below.

A hands on prayer and healing service has been scheduled
for March 8th at 7pm at St. Jude Church. That is a Thursday evening. We wanted to have a hands-on prayer service prior to our departure to Michigan on the 12th of March for the bone marrow transplant. Father Patrick will preside over the service and will invite the priests/preachers forward to lay hands on Henry. If your priest/preacher wants to participate, please have him/her contact Fr. Patrick at the Church
office. Hours:
Monday - Friday 8:30am - 1:30pm
Phone: 540.639.5341
Fax: 540.639.4738
Email: stjudechurch@juno.com

All are welcome to attend this service. It is open to all denominations. Please feel free to announce this in your bulletin. Thank you for all of your prayers and support as we journey through this transplant process. Angela and Patrick Moore and boys

Monday, February 19, 2007 6:57 PM CST

We had a great trip on the Disney Cruise and at Walt Disney World. The weather was chilly but we really did have a great trip. I am going to try to get the photos loaded in a group gallery and put the web link on Henry's web page. That is my goal for the week, so keep checking back. We saw lots of characters and made great memories. We talked to Dr. Levine this morning and he set up for Henry to be in Ann Arbor, MI on March 12th. The transplant will be marrow from an adult and not a stem cell umbilical cord. He said the match was perfect and that he wanted to use marrow. We are in agreement with that and we are ready to move forward. We are apprehensive, but who wouldn't be? We should be so thankful and we are. We are just scared to death and trying to act perfectly normal around Henry. He notices everything! Dr. Levine said that if the transplant has no complications, which is rare with an unrelated donor, we should be back in Radford by mid May. Dr. Gehrz is arranging for us to meet Dr. Joan Fisher in Roanoke prior to our departure to Michigan. She and Dr. Gehrz would manage all of the post tranplant labs and medications and such rather than staying in Michigan to do that. We hope that we will be able to do that. Anyway, I will keep posting as I know more. Thanks for the new messages. We appreciate the support of all of you. Angela and family

ALL NEW PHOTOS ADDED!!!! click "view photos" above and also click on the flikr link below

Thursday, February 8, 2007 8:02 PM CST

I took Henry to Roanoke today for a follow up appointment and all was well. He really did great with that hernia surgery. We are getting all ready to leave on Sunday for the Disney cruise and then on to Disney World on Thursday the 15th. I probably will not update the site while we are away. I did write the transplant nurse to request an update on the confirmatory testing of the donors. I got an email back today and I am not sure how to explain it other than to just paste her note within my journal entry. So here it is.

Hi Angela

Just tried to reach you by phone but you weren't available so I'm sending this instead so you have an update before you leave for sunny Florida!
I hope you guys have a blast!

The update on Henry's donor search is the following:
There are two donors who are very good matches! Each of them match on 9 of 10 antigens. We put heavy emphasis on only eight of the antigens, so when we look at those eight, the donors match on seven of the eight.
Now, the cord we have identified matches on 5 of the 6 historically matched antigens. It may end up matching on 7 of the 8 antigens, we don't know that yet. We could use the cord regardless.
So, Dr Levine is aware of this and will need to select either the donor or the cord blood for transplant.
In the meantime, you guys should start thinking about timing of transplant. We're ready when you are.
Just let me know.

Take care,
Shelli

P.S. You're heading south this weekend and I'm heading north....I think I like your plan better!

All I can think about is pulling out of the driveway with the van all packed and leaving Radford. It just gives me a tearful feeling. I will update again when we return from sunny Florida.
Angela and family

Friday, February 2, 2007 6:19 AM CST

Nothing new to report from Michigan this week. We are so anxious and can't imagine how it must feel to be wearing a beeper and waiting on a tranplant list for a heart or lung or kidney. Henry is doing great. He is back at school and moving around like nothing ever happened. He is not able to participate in PE for 3 weeks and he is breaking all of the rules at home. We are constantly telling him to calm down. Thanks for all of the messages, the e-mails, the calls, and the cards. You are all special to us. Angela and family

Saturday, January 27, 2007 8:40 AM CST

Sorry for the late update this morning. We all slept in late. Harper stayed with Miss Karen to let us get some good sleep after such a long day yesterday. Henry didn't get into surgery until close to 3pm. He was so good and didn't complain much about not getting any food or drink all day. I do have to confess that we did promise coca-cola all weekend if he didn't complain. Anyway, when Dr. Wattsman came to the room to talk to us after surgery, she said that he was going to be very sore. The abdominal wall had to be sewn shut as well as the hernia opening. It had gotten quite large since November. I am sure the basketball season didn't help much. When he woke up in recovery, he asked for us and told them that he hurt a little. They gave him a dose of Fentanyl and he was great when he came into his room. Then, just like a light switch, he started screaming LOUD and crying big tears, rocking back and forth, sweating, heart rate in the 140's and just going crazy. Patrick and I both were stunned. Dr. Wattsman ordered a small dose of morphine which knocked him out for an hour. He woke up like nothing ever happened. Said he was ready to get up and go to McDonald's. He walked to the bathroom, changed out of his gown and climbed in the van and off we went. He didn't fall to sleep until late last night. He asked for his Daddy to sleep with him. He is up this morning and Miss Samantha has taken he and Samuel out for a big breakfast. We are so lucky.
We have vitually nothing planned for the rest of the weekend, so we all can rest.
Thanks for the prayers and the calls. Thanks to Dana for dropping of the stuffed shells-can't wait to eat them tonight. Thanks to First Christian Preschool for the adorable stuffed monkey and balloon arrangement.
We are blessed to have the friends, family, and support that we have. Angela and Family

Tuesday, January 23, 2007 5:20 PM CST

Henry went to the surgeon in Roanoke today for consult for the inguinal hernia repair. He is scheduled for surgery at 1:15 this Friday and it will be at Roanoke Community Hospital with Dr. Wattsman. Henry had the other side repaired last year and had a quick recovery so we expect the same this year.
We appreciate all of the new (and old)messages. I am always amazed (and thankful) at how people get on to this and other health related blogs.
Please say an extra prayer for Henry on Friday and thanks for continuing to check in on us.
Be sure to look at all of the new photos.
Angela and Family

Friday, January 19, 2007 6:40 AM CST

I have been unsuccessful with the photo of Henry in the cockpit of the plane that he took to Alabama for his hunting trip with Poppy. I do, however, have a note from the flight attendant who accompanied him and thought I would share it with you all. Here it is...
Hi Mr. Richerson,

I am the flight attendant that brought Henry from Charlotte to Sarasota last week! I wanted to email you the pictures I took of him on the airplane. I also wanted you to know how much of an impression he made on me. He is such a wonderful little boy and will forever be in my heart! I will keep track of his treatment and how he is doing if you can give me the website address again. I would love to keep in touch with him:) He was an absolute delight to have on the airplane and he is a big part of the reason that alot of us flight attendants get up and come to work in the morning. If only all of them could have had the pleasure of meeting him!
I have attached the pictures with this email and if for some reason they don't come through, please let me know and I will re-send them.

Please tell Henry that Rhonda and I said, Hello:)

Thank you,

Tish Hickman
Flight Attendant, Usairways Express/PSA Airways Express

I got a call yesterday from the transplant coordinator at University of Michigan. The umbilical cord unit looks like it is a good unit for a transplant. It is a 7/8 match and the mismatched location is one that has not casued rejection problems in the past. The 3 adult volunteer donors' blood work is still being tested and we will know more about those in about 10-14 days. Henry will probably have surgery in the next few weeks for the hernia problem. Univ. of Mich. wants it repaired with adequate healing time prior to the transplant. I am going to try to set that up as soon as possible with Dr. Wattsman in Roanoke.
We are going on a family trip Feb. 11(Harper's 2nd birhtday) through Feb. 18th. We are going on the Disney Wonder 4 day cruise and then 3 days at the Animal Kingdom Lodge at Walt Disney World. We are all excited and hope that this will calm and distract some of our anxiety.
As promised, I will keep you all up to date. Thanks for continuing to check in on us. Thanks for your encouragement, your offers to help and your prayers. May God bless you all. Angela

Tuesday, January 16, 2007 6:52 AM CST

Sorry for the delay in the update. Henry's 7th birthday was on the 11th and I think that we celebrated for over a week! His gift from us was a new baby guinea pig that he named-Pookie. He had a birthday party on Saturday night at the Dedmon center after the men's basketball game. The RU Foundation office(Nikki Shepphard and Tommy Lillard) and Greig Denny helped to organize this and Henry really had a great time.
I have contacted the transplant coordinator in Michigan and we still do not have a date. Of the 5 matches, 3 people gave additional blood samples to be tested to see which is the best match for the transplant. The cord blood unit also had a blood sample that was requested to be tested too. All of the blood samples are in the lab at the University of Michigan and the testing should take 10-14 days. We do not know where the donors are located. Their blood was shipped from their respective locations in the world to the University of Michigan. Once we know the dates, we will let you all know as soon as possible.
I hope that I can add more to this by the end of the week. We are getting anxious....Angela

Monday, January 1, 2007 4:57 PM CST

Happy New Year! Christmas was exciting. The boys woke us up at 5:40am on Christmas morning. They could not contain themselves. Patrick and I were exhausted all day. We have recuperated and all of the Christmas decorations are now in the attic so that we can get back to getting all of our pictures hung.
Henry enjoyed his time in AL with the family there. He flew as an "Unaccompanied Minor" with US Airways and they treated him so great! We planned it as a direct flight from Charlotte to Pensacola. Patrick and I were sitting in the airport watching the plane back out of the gate in Charlotte and this lady was waving to the pilot. I asked her if she knew the pilot and she said that he was her son and that he had just earned his "captain" 3 weeks prior. His name is Captain Matt and he was expecting a baby any day. We hope that it arrived safely and that they are sleeping! Captain Matt's Mom quickly called his cell phone to tell him that he had a special passenger on board. During the flight, he let Henry get into his chair in the cockpit and the flight attendant took pictures of it all. Henry was so excited. We do not have the photos yet, but I will load them on this site when we do.
Thanks to Captain Matt and his mother for making Henry's first solo flight a fun and memorable one. Henry was determined to kill a deer while in AL but he did not get so lucky. He does have a good hunting story though-embellished and hillarious.
The donor search is now on! The NNDP awarded us the $10,000 grant to apply toward the $30,000 of out of pocket expenses for the donor search. Our insurance does not cover this as most insurances do not. We were very excited about this and we will keep you posted on the progress.
We both have decided that the transplant is going to happen in Michigan. We did not have a great experience at Duke during our last appointment and we both just have a better feeling about Michigan. It is going to be very hard to be so far away and I hope that you all can start thinking of ways to visit there during the next year. We will be there until some time this summer. We do not yet have a date for the transplant, but it will be happening sometime late January or early February. I will post on this website as soon as I know anything.
Take care -Patrick, Angela and boys

Saturday, December 23, 2006 8:06 AM CST

Sorry that I have not posted in a while. Samuel has recuperated from the flu and we all have 5 more days of the Tamiflu to keep us from getting it. As for the move, there are pictures that are not yet hung and one box of books that has not been unpacked and other than that, we are all unpacked and settled. The gifts under the tree are causing much curiosity in the boys. Harper brought one to me last night and it was partially unwrapped so I let him finish it. It was the movie Barnyard from the Greco’s. Jenny is Samuel’s Godmother and Sue and Mike have officially called themselves the Grand-godparents since. Sam quickly took the movie to his room to watch it and loved it. Henry came to our room at about 11pm last night begging for us to pull his tooth. Well, finally, after about 15 minutes of trying, he lost another (the 7th one) tooth last night. One of his front teeth is in and thank goodness, or he would not be able to bite into food very well at this point.
We have no plans for travel this holiday season and we are happy to sit at home and enjoy peace and quiet. Well not too quiet with 3 boys. We can’t wait to see the excitement on Monday morning. We both are quite emotional of what next year will bring, for all of our family. Our brother in law, John, will undergo treatment for lymphoma and he is special to our boys and to us. Please respect that we cannot answer many questions regarding his diagnosis and treatment. I mentioned this only because we need to pray and be so thankful for our own personal health. Also, I want to point out that all of our lives can be different next year which should give us more reason to hug up to our spouses and children and parents and other loved ones this holiday season, and always for that matter.
As each of you follows this caringbridge page, I am constantly following other pages of people that we have met along the way. I am amazed at Peyton’s health after his transplant in July 2005 for Kostmann’s Syndrome. He is doing great and we are so happy for him and his family in Ohio. I can’t even imagine how hard this Christmas will be for the Tucker’s in Illinois. They lost their daughter in September of this year. Julie, the mom, has inspired my ability to update Henry’s webpage more often and more in depth. When I talk about AJ, it all gets more personal. AJ also had Kostmann’s Syndrome. He had his transplant at Duke and passed on October 5, 2005. His mom, Angie, watches this site, which I know is hard for her. I hope that their Christmas is enjoyable and peaceful.
None of these stories is to make you sad. I just want you to reflect, just as I have, on our blessings and to be mindful of other’s sadness and suffering while we might be rejoicing.
May God bless you all and we hope that your 2007 is an exciting one.

Merry Christmas from The Moore’s

Monday, December 18, 2006 6:08 PM CST

Still nothing new to report. We have not heard from Duke nor Michigan. I guess the holidays has everyone stalled. The move has been crazier than expected. The refrigerator stopped working and we lost all of the contents of both sections. The dishwasher won't dry the dishes and that is a problem as all of the dishes need to have the heated dry cycle to kill the germs. I had forgotten what it was like to live in an old home. On a positive note, we had the slab poured today for our hot tub. It should get moved over from the old house on Thursday. Our joints have been suffering after the move. The old house still has not sold. It is driving me crazy and Patrick just laughs and calls it our vacation home on 10th street. We keep getting messages about how sad it looks without Christmas decorations. Oh well.
Samuel became very ill on Saturday evening and has had a high fever. I took him to Dr. Gehrz today and he tested positive for influenza. It was the 6th case of the flu that Dr. Gehrz had seen today. Beware parents, it is here and all of my children had the flu shot in October and Sam still got it. The whole house is now taking Tamiflu. I just want to cry.
Henry is going to get Mr. Cuddles from Ms. Patterson during the Christmas break. He is so excited. I have made it clear that the care of the guinea pig is not my responsibility. I am glad that he got to bring him home though.
Hope that you all have a wonderful holiday season. We are glad to be able to relax in our new (old) home. The boys are getting very excited. Henry will leave on the 26th to fly by himself from Charlotte to Mobile to be with Poppy and Mimi for a week. They will hunt and Henry really wants to shoot a deer. Wish him luck.
Angela, Patrick, and boys

Tuesday, December 12, 2006 8:38 AM CST

Nothing new to report. We are in the process of moving and it has been stressful. I will be in contact with physicians at the end of this week and will make another posting. Thanks to all of you for your encouraging messages. We do read them and appreciate the support. Thank you Angie for signing the guestbook. I think of you and AJ often and pray for a wonderful holiday season for your family. God Bless, Angela Moore

Wednesday, December 6, 2006 5:34 AM CST

I wanted to update you all with a what little information we learned yesterday. Dr. Kurtzberg is over the Pediatric Bone Marrow and Stem Cell Transplant program at Duke. She was so glad to see us return and ready to move forward with the transplant. She had recommended to us that Henry have the transplant in 2005-just after Harper was born. She took one look at Henry yesterday and said she could tell that things were headed for a downward spiral regarding his health. His teeth and gums are in terrible shape. He will need to see a pediatric dentist that takes care of the transplant children to try to get his mouth as health as possible before transplant. She noticed several sores on his skin that troubled her. She wants the hernia repaired before the transplant and she said that he will undergo a full body CAT scan(to look for hidden infections) as well as tests for every major organ to make sure that all are free of infection and functioning properly. This will require many trips to Duke over the next few weeks and we are prepared for that. She is going to initiate the confirmatory testing of the possible donors today. NONE of the donors have been contacted yet and we do not know where the possible donors live. She said it may take time during the busy holiday season to get these people into their local labs for blood work so that Dr. K(as we all affectionately call her)can look at the stats on the adult donors and the umbilical cord units to weigh the odds on each one. She said that the transplant team will sit down with us for a total of 12 hours of education about the transplant process prior to his admission for tranpslant. She agreed to wait until after his birthday on January 11th so the transplant will happen sometime late Jan. or early Feb. We are thinking that it will happen at Duke, but that is not yet final. Still waiting on a some more information to make that decision. Henry does understand what is going on. I know that he cannot comprehend the entire transplant process nor the risks involved, but he believes that this will free him from his daily shots and that makes him very happy. We are very scared and thankful too. We want to get into our new home and have a great holiday season and hope that the New Year brings us hope for a long life for Henry. Angela

Friday, December 1, 2006 3:33 PM CST

Henry has a consult for bone marrow transplant on Tuesday, December 5, 2006 with Dr. Kurtzberg at Duke at 2:30pm. This is right when the movers are scheduled to move us, but it was this appointment or not until next year! We will hopefully be moved in by Wednesday. Angela

Wednesday, November 29, 2006 7:19 PM CST

Nothing new on the preliminary bone marrow report-thank God. Many of the other tests are still pending. Henry is doing great. See previous journal entry if this doesn't make any sense to you. Angela

Tuesday, November 28, 2006 7:48 PM CST

Just wanted to add a quick update to let you know how Henry did today. He was a real trooper and the nurses and anesthesiologists thought he was too cool. When he waked up in recovery, he had a small box on the foot of his bed-his own "doctor kit". He used it on his friend, Blake Hall, who happened to be at Duke today for his eye appointment. They were so cute together. We will know some preliminary information tomorrow afternoon and I will do my best to post the update as soon as we know anything.
I will say that today was yet another emotional day. Dr. Rosoff had not yet talked with the physicians from Michigan, but entered the room this morning with the intent of telling us that he thought it was time to discuss transplant for Henry. (He had read the data from the study that Dr. Boxer recently published.) He encouraged us to be open to coming to Duke for a cord blood transplant and to come back to discuss transplant again with Dr. Kurtzberg who is world renowned in the stem cell transplant field. She is doing more of these than anyone in the world. Needless to say, we are very confused, tired, and emotional.
If anyone has a crystal ball, could you drop it off at our house this week? Just kidding. Thanks for your concerns and your prayers today. They definitely worked. God Bless, Angela

Friday, November 24, 2006 9:03 AM CST

We had a wonderful Thanksgiving with the Armentrout family. Thanks to them for making us feel like family and for a delicious meal. Due to our scheduled move during the week of December 4th, we decided to stay in Radford for the holiday season. Several questions have been raised many times to us, so I decided to answer them here in case you all may have the same questions.

How can it be that Henry now has 5 matches all at one time when he did not have a match for years?
I am no expert on this but here is what we think. The doctors in Michigan wanted an updated marrow type on Henry. We think that this brought him up to speed with the recent data on the registry. Also, he could have matched a set or sets of siblings, meaning that some of these 5 could be brothers and sisters. This is all SPECULATION. We really don’t know, but this is what we think.

Is it upsetting to you that Duke hasn’t updated Henry’s marrow type and searched the registry recently?
We have been at odds with the physician at Duke for some time. We just didn’t get the feeling that we were on the right track for Henry. This is why we located the physicians at Univ. of Michigan for another opinion. We choose not to get upset, but are thankful that God led us to Michigan.

Is it true that all of the potential donors are from Michigan?
No. The marrow search was initiated by the physicians in Michigan. The potential donors have not yet been contacted and could be from anywhere in the world. We will know where the donor resides when we are allowed to know this information-one year after the transplant.

So when will the transplant happen?
We do not know for sure. What we do know is that Henry has a bone marrow aspiration test at Duke on November 28th to check for any progression to cancer-leukemia. Right now, Henry has a bone marrow failure syndrome, no leukemia. This disease has shown to progress to leukemia at or around the age of 10. The goal is to have the transplant before any abnormal cancer cells are detected in the marrow. If anything shows up on this test next week, the transplant will happen very soon with the donor being located very quickly. If it continues to show the Kostmann’s (the bone marrow failure to make neutrophils), the National Marrow Donor Program will take time to contact these 5 potential donors to have additional blood tests to determine which one would be the best donor.

Since he has a perfect match, he will be fine, right?
He has a much better chance at long term survival with a perfect match. It is very important for everyone to understand that the next part of the journey is the hardest. Henry will have to take 7 days of very intense, high doses of chemotherapy to kill his current marrow before he receives his donor’s marrow. This will leave his body with absolutely no immune system and at risk for infection. The high doses of chemotherapy can cause liver, kidney, and/or lung damage that is irreversible. He will have to make it through this and really won’t be deemed cured until well over a year after he receives his transplant. I added a link to information on the steps of bone marrow transplant at the bottom of the page.

What can we do for your family now?
Keep praying. We will eventually need some help with the younger kids, but not until we leave for the transplant. We are thinking of having a huge send-off party for Henry where everyone can sign a banner for Henry to take to Michigan. He will be able to decorate his hospital room with memorabilia/photos from home and that truly helps you tolerate the 4 walls for 30 straight days. Please be thinking of ideas and feel free to email or call me.
Hope this helps to clear some questions from your mind. Thanks for continuing to check in on us. We are thankful for our blessings. The Moore family
P. S. We have a Marrow testing at New River Community College in Edwards Hall on Wednesday, Nov. 29, 9AM-3PM.

These tests are FREE - the cheek swab to become a donor on the National Marrow Donor Registry.

Thursday, November 16, 2006 5:35 PM CST

As promised, I am going to give you the latest information as we get it. The University of Michigan has completed a preliminary search of the National Marrow Registry (which includes adult voluntary donors and umbilical cords) and called me today with the results. Several matches were identified. Five (5) potential perfect adult marrow donor matches, One (1) potential perfect umbilical cord match, and several more umbilical cord matches that lacked only one antigen from being perfect matches (mismatched at 1 antigen only). As you can imagine, we are thrilled. The next step is a full-fledged search of the marrow registry and that is scheduled to happen after we get the results from Henry’s marrow aspiration on November 28th at Duke. If the results show anything abnormal, this process will go much faster than usual. If the results do not show any progression to cancer, we will probably not know anything more about a donor until after Christmas.
These results would not include those of you who attended the bone marrow testing on Nov. 14th and 15th. I believe that those tested will be added to the registry in about 3 weeks. (These will be on the registry when the full-fledged search is done.) Thanks to all of you who joined. Fifty-two (52) people at Pulaski Community Hospital (where I work) participated in the drive and many had been tested 6 ½ years ago when Henry was first diagnosed. We were so touched by the support from the hospital, the city of Radford and the surrounding communities. Thanks to Paula Downs and the volunteers at the American Red Cross for helping make this drive happen. We will never be able to repay Paula for her efforts to help Henry. I am not sure of the grand total, but I do think that nearly 200 people were added to the registry from the Radford University drive. We learned that there was a bone marrow drive at Virginia Tech on the same two days where many volunteers were added as well.
This great news comes on the heels of a crazy week. Harper has been ill and is on an antibiotic. Samuel had a sinus infection and was placed on Amoxicillin and broke out with a rash from head to toes-no kidding- his entire body. Henry ran from him saying that he had the chicken pox. Henry was doing great until the dentist called to tell me that Henry had an abscessed tooth. He had to get blood drawn and start taking a prophylactic antibiotic prior to the tooth extraction. He was so sweet when he got his blood drawn. He patted his arm and said, “I hope that this is a match for me.” I closed my eyes to hold back the tears and I said that I hoped that it was too. He was a trooper and wrote the tooth fairy a note to please leave the tooth when she left the money. He took the tooth to school today and I am certain that Mrs. Patterson loved that!
Keep saying prayers for Henry. We are so lucky that his health has been good. The plans are progressing for a transplant in the near future. Our stress levels are raised and we need all of the love and support that you can give. Angela and Patrick

Friday, November 3, 2006 5:02 PM CST

It has been a long while since I last updated the web page. I must be totally honest and say that I have not even logged on to the website in several months. I am sorry to all of you who check it regularly for updates on Henry. I know that you all care deeply for him and for us. I have avoided the website because it reminds me of things that I want to keep pushing to the back of my mind. These things are so difficult for me to even type. I know that we were told that Henry would need a transplant to survive, but he has been doing so well for so long that I thought magically that he could just go on this way. Unfortunately,he can’t. It breaks my heart to think of the pain that he will have to suffer. I can’t bear to think about being away from Samuel and Harper while being with Henry for the transplant. I worry so much about Samuel and how he loves Henry so much and how he will miss him dearly. Harper lights up like a light when he sees Henry and follows him like a puppy through the house. Harper will miss him dearly, too. I worry about Patrick and how much stress that it will be for him to continue to try to focus on work daily while Henry is in a transplant unit fighting for his life and has his mother in a nursing home fighting for her life. Typing these words is reality and I have to say that I really don’t want to face it. I do not want to lose my child.
If you have followed this website, you will know that Henry does not have a perfect match for a transplant. He takes the 2 shots of Neupogen every day to keep his bone marrow working just enough to fight off the day to day bacteria. Patrick, Henry and I are in Ann Arbor, Michigan right now and have just completed a day long visit with Dr. Larry Boxer and Dr. John Levine (a Wahoo). Dr. Boxer has just published a lengthy study on Kostmann’s in the journal Blood in June 2006. The study shows that Kostmann’s children that require very high doses of the Neupogen with a marginal response, convert to a very aggressive form of leukemia, called MDS/AML, by age 10. This statistic applies to Henry and he will be 7 in January. Both physicians recommended transplant as soon as we can locate a suitable donor. As some of you may remember, Dr. Kurtzberg at Duke also recommended transplanting Henry as soon as possible. So today, Henry had 6 extra vials of blood for tissue typing for a transplant. It will take about a month to get these results and then an updated search of the registry can be performed. To this date, Duke has been checking the National Marrow Registry only when we insist that it be done. In Michigan, they will check the US registry, then the International Registry, then other registries throughout the world to look for a match for Henry.
Dr. Baker from Minnesota had recommended (in 2005) that Henry get his bone marrow checked every 6 months so that the physicians might be able to catch the transition to leukemia before it actually happened. Now Dr. Levine has recommended that we change to quarterly testing as Henry falls in the high risk group of children requiring high doses of Neupogen. I have just scheduled his next aspiration on November 28th at Duke. We hope and pray for the usual results, that is that the marrow will show the absence of mature neutrophils (the Kostmann’s Syndrome), and will not show any signs of pre-cancerous cells or cancer-leukemia. If the marrow did show leukemia, Henry would need a transplant right away and the survival rate would be slim to none. The thought of this scares me to death.
I am one to hide my emotions and fears so it may surprise you to know that I think and worry about this every day of my life. I struggle with the fact that we may make the wrong decision. If we allow a transplant on this healthy-appearing child and he dies, I would never forgive myself. But we have learned today that having a transplant while he is most healthy has the best success. Patrick and I learned very interesting information today. Dr. Levine has transplanted 10 children with Kostmann Syndrome and 7 are still living. He has reflected heavily on the successes and failures throughout each transplant process to refine the transplant protocol specifically for the Kostmann diagnosis. I can’t really explain everything as eloquently as he did, but I can tell you that Patrick and I were very impressed with the physicians here and at the same time we were in shock. We felt very comfortable with Henry being under the care of the Duke physicians. However, we have heard things today that we had never heard before in regards to approaching the idiosyncrasies of the Kostmann’s patient.
Please do not read into this posting that we have a transplant scheduled. We have to wait for the results from the tissue typing and have a search performed on the National Marrow Registry. We also have to get through the bone marrow aspiration test on November 28th. In addition to all of this, Henry has developed an inguinal hernia on the left side (the right side was repaired last year) and he has a follow up appointment(in Roanoke) for this on November 9th. This will likely require surgical repair-will update you as we know more.
The final decision for moving on to the transplant process will fall on to the shoulders of me and Patrick. We have to dig down deep and find enough courage to make a decision that we will be able to support no matter what. My heart is skipping a beat just thinking about that. What will probably be hard news for our families and friends is that more than likely, Henry’s transplant will be performed at the University of Michigan here in Ann Arbor. We are convinced that the physicians here are better educated about Kostmann’s than any that we have encountered thus far in this journey. We both felt that our trip here was well worth the frigid temperatures and snow flurries.
Henry is fine and was out of the room during all of the conversation with the physicians today. He is ready to go to the mall to get a Playstation! We plan to take him to see the new Santa Claus III movie tonight and have a great evening. Meanwhile, Patrick and I will be constantly pushing the horrible thoughts out of our minds to try to focus on what we do know. We do know that we have been blessed with a beautiful family and wonderful, caring and supportive friends. We appreciate all that you do for us. We will be home tomorrow evening. Please respect that we want you all to know as much as we know, but that it is very difficult for us to talk about this openly. I promise that I will update the webpage as soon as we know anything new. Angela
Bone Marrow Drive at RU 10am -4pm Nov. 14th and 15th call American Red Cross in Radford for more information

Wednesday, May 17, 2006 8:14 AM CDT

We received the final report on all of the testing on Henry's marrow yesterday. Everything looks the same as it has for the last 6 years. It continues to show the Kostmann's Syndrome, but no cancer or any other genetic problems. As you can imagine, we are thrilled. We will see Dr. Rosoff in 3 or 4 weeks to recheck the lymph node in the neck and the spleen. Both may be enlarged in response to his last infection and he wanted to give them time to reduce in size. I do not have the date for the appointment yet, but I will update when I know.
Several people have asked if Henry is feeling okay, if his spleen/stomach hurts, and/or if you can see the lymph node in his neck. Henry is doing great. He has never once complained of pain in the spleen area. Dr. Rosoff is just perplexed by that. He said the lining of the spleen is full of nerve endings and that Henry's was stretched out to the max. As far as his neck, yes, you can see little nodules when he turns his head, but the really large one is deep down in the tissue. I haven't really poked around to feel for it myself. We will just wait for the follow up appointment to see.
This recent scare has really threatened our comfort zone. Henry goes through each day like a normal child his age (with the exception of the 2 shots) and we sometimes forget that he is fragile. The one study that is out regarding Kostmanns Syndrome, shows that a large percent of children with this diagnosis convert to a very aggressive form of leukemia around the age of 8. A successful transplant before this would happen vs. continuing with the daily injections is the continued battle inside Dr. Rosoff's mind and our minds. This constant worry and the thought of having another child for a matched sibling transplant causes much angst for us.
We ask for your prayers for Henry's continued success with the Kostmann's syndrome and for us as we continue on our journey with him.
P. S. Check out the new photos in the photo album!
Sincerely, Angela, Patrick, and boys

Wednesday, May 10, 2006 7:26 PM CDT

We received more good news today from Dr. Rosoff. The final results did not show anything new in Henry's marrow. The presence of the Kostmanns (the problem with the maturation of the white blood cells) has been there since birth and is still there. There were no signs of progression to leukemia which is usually what happens if not treated with a bone marrow transplant. Dr. Rosoff wants to see Henry again in 10-14 days to check the lymph node in his neck and to decide if a biopsy is really necessary. As you know, it takes a while for Henry to heal after surgery and the surgery would expose him to germs that would be hard for his body to fight. If it is not necessary, Dr. Rosoff wants to avoid it. We are so happy that today is over and that things worked out like they did. Thank you all for your prayers. We really have felt your support this past week. The Moore's

Tuesday, May 9, 2006 11:48 AM CDT

Great news, the preliminary results showed nothing new in the marrow biospy today. We will receive the final results tomorrow evening by phone from Dr. Rosoff. Henry did great during the procedure and right now, he is outside shooting hoops with his dad and Anna-Kate Ellerman(his kindergarten teacher's daughter). We are going to grab a bite for lunch and head back to Radford. The biopsy of the lymph node in the neck will take place later and we will keep you updated as we know more about that. Right now, we are joyful. We thank God for his blessings today and we thank you all for your support and prayers. Angela

Monday, May 8, 2006 6:17 AM CDT

Thanks to all of you for your phone calls, your kind messages and e-mails, and your prayers. We will leave Radford early afternoon today to go to Durham. We will have a fun dinner somewhere and we are staying in a hotel with a heated pool for Henry to swim (and get tired). We will eat late night snacks-(he is not allowed any food or drink after midnight) and be at the hospital at 8am tomorrow. His procedure is scheduled for 9am and we will stay in Durham until the doctor calls us with preliminary results. If there is nothing new in the marrow, we will come home and the biopsy of the lymph node in the neck will happen when it can be scheduled. If there is anything unusual in the marrow(in addition to the Kostmanns), we think that we will have to stay in Durham, but we do not know for sure what will happen next. Either way, I will update the website as soon as we get any information. Henry is not a bit anxious or worried about this appointment and we are thankful for that. His wonderful personality and smile have really helped us through these past few days of worry. Thanks again, Angela and Patrick

Thursday, May 4, 2006 9:16 PM CDT

Okay, here is a new update. I didn't think it would sound like this. Patrick and I took Henry to Duke today for a SCHEDULED appointment. During the exam, Henry’s doctor found that he had a dangerously large spleen and lymph node in his neck. He ordered a CT scan which confirmed his findings. He is suspicious of these things combined with the last infection in his foot about 10 days ago and some changes in his white blood count. He is scheduled for a bone marrow biopsy on Tuesday, May 9th, at 9am at Duke. He will then be scheduled for a biopsy of the lymph node in the neck. This is all we know now. The neck thing could be anything benign to as serious as lymphoma, but none of this is confirmed.
Thanks to all who keep checking the website and I will update this site when we get the results from Tuesday's testing. Angela

Monday, January 9, 2006 5:54 PM CST

Happy 6th Birthday to Henry on January 11th! We are thankful for another healthy year with Henry. He had a scheduled appointment at Duke in November for a bone marrow aspiration and we received the final results just before Christmas. They showed the continued presence of the maturation arrest of the neutrophils (Kostmann’s Syndrome) and NO PROGRESSION TO LEUKEMIA!! The marrow was also sent to Seattle, WA for a different test to tell whether or not his body will continue to respond to the Neupogen injections. This test showed nothing abnormal as well. As you can imagine, we are elated. Henry had not had to increase the amount of his injections since December of 2001 and in July of this year, he suffered a skin infection that he just could not fight. He started oral Bactrim every day and had to have the Neupogen injection increased. We have been uneasy since then- thinking that this would be the transition- but so far, things have been going great. I want to express a special thanks to Anna-Kate Ellerman, who lives in Durham, for helping us with Henry’s visit to Duke. He was not able to eat or drink anything from the time he woke until around 11am. She, like her mother, is very talented and was able to teach him songs and keep him interested in anything but food or drink. Thanks Anna-Kate-we’ll be calling on you again in May!
December was a hectic month. We went to Disney Dec. 7th-12th. We left baby Harper at home with our sitter and we were hardly able to keep up with Henry and Samuel. I am not sure what we were thinking- having little ones later in life- hope it keeps us young. Henry’s favorite rides were Test Track and Dinosaur. He successfully convinced Samuel to get on these rides, but I can’t say that he liked them as much as Henry did.
We all flew to Mobile on the 23rd for a family Christmas with my family and it was sunny and warm. Henry and Samuel got new bikes and BB guns and were able to break these in while we were there. We returned to Virginia only to return to work and the craziness to keeping up with 3 boys!
Patrick’s business is doing great. We are so thankful for this and I always knew that his wonderful personality would pay off. I am working part-time at Pulaski Hospital and I love it. I have more time for the boys and they seem to love it too.
We continue to hope for a match for Henry and will try to do our part by having another child. Of course, Patrick would love a girl and I am game for anything after 3 boys. We know that God will allow another baby if it is meant to happen.
Thanks to all of you for continuing to check in on us. We appreciate your thoughts and prayers more than you’ll ever know.
Sincerely, Angela

Thursday, November 10, 2005 8:57 AM CST

Just wanted to give an update about the bone marrow drive. We tested about 150 people and we were thrilled with the response. Thanks to all who volunteered their time, especially Paula Downs at the Radford Red Cross, to work the drive. Henry was able to visit with many of the donors and had a great time.
Henry continues to enjoy Kindergarten and keeps his teacher busy. We all love Ms. Ellerman. He has made new friends and really likes to talk and laugh in class. Samuel just celebrated his 4th birthday and Harper is now 9 months old.
We have had a busy fall season and we are excited about our trip to Disney in December. We will also go to Alabama for the Thanksgiving and Christmas holidays.
We have no pregnancy news to report. We need your prayers for our peace of mind as we try to have another baby. We promise to let everyone know as soon as we know if we are pregnant and ask that you bear with us as we have had trouble with being able to discuss it as openly as we have in the past. With the busy holiday season, we are certain that it will not be until the New Year.
Thanks keeping up with Henry and for all of your support as we go on this uncertain journey. The Moore's

Thursday, October 27, 2005 6:15 AM CDT

RU SGA is going to hold a Marrow Testing for students on November 9,2005 from 10am-4pm at the Heth Student Center. Please call the Radford Red Cross if you would like to be scheduled. We are hoping to continue to get people who were out of town or busy during our other drives. Thanks to all of you for your continued support. The Moore's

Wednesday, October 5, 2005 1:35 PM CDT

Very exciting news to report...Henry has started giving himself his own shots. He actually has started refusing to let his Dad even attempt the shot. It is so much easier now, he doesn't even grimace when he inserts the needle. We were told that this might happen by age 7, but he decided he wanted to start now. He is such a big boy.
More exciting news....Henry is finally getting a tooth! (Front,bottom tooth) He came running to me while brushing his teeth and said "Mom, I think I am getting a tooth!" We were all excited for him. It's the first thing that he shows to everyone. H
enry and Patrick went to the Talladega race with Poppy and had a great time. He came home talking about Kurt Busch but yet he had an Earnhardt, Jr. T-shirt. That kid has it BAD!
Thanks for continuing to check on Henry. We all need your continued prayers to get through each day. The Moore's

Wednesday, September 21, 2005 7:46 AM CDT

Well it was about time for an update! Kindergarten has been an exciting adventure and a big change for our family. Henry loves school and his teacher, Ms. Ellerman. He is learning new things every day and is excited to tell us all about it when we get home from work. He begged to ride the school bus and had his first bus trip on Monday. In Radford, that requires the purchase of bus tickets for him to use each time he rides the bus. This is a nominal fee and the bus he rides is only for Kindergarten children. He loves riding the bus! His soccer season has started and he scored his first goal ever last night. He was so proud of himself. Everyone (both teams) on the sidelines cheered for him too! He plays soccer on Tuesdays and Thursdays and he takes piano lessons on Mondays. I am sure all of this sounds pretty hectic, but remember, we have 2 other boys that are involved in activities, too. I am keeping a detailed weekly calendar and I still feel overwhelmed. Henry is in good health and we are thankful for that. Thanks to all of you for checking in on Henry. Peyton is home and doing well after his transplant. AJ is still in the hospital. Both need our continued prayers. Sincerely, The Moore's

Friday, August 19, 2005 1:47 PM CDT

Sorry for waiting 2 weeks to update. Henry has been doing great this week. His surgery incision has almost healed. He pulled the steri-strips off too soon and we had to make a visit to the pediatrician last Friday to get it checked. It had pulled apart at one end and was bleeding some. He also tried to pull another tooth last Thursday night (without success!). I was so stressed last Friday that I could not get my thoughts together to type a journal entry.
This has been an exciting week for Henry. He is counting down the days until school starts. He will have afternoon kindergarten class with Ms. Kay Ellerman. Ms. Ellerman's son actually donated bone marrow some time ago. We will meet with her on Monday night during open house.
We have planned a full weekend of swimming and school preparation. Thanks for keeping up with Henry. Hope you get a chance to check Peyton's website. He is doing well and may go home soon. The Moore's

Friday, August 5, 2005 6:54 PM CDT

We just want to say thanks to everyone for the prayers, the phone calls, the well- wishes, and the messages in the guestbook. We can't go through things like this without support from all of you.
Henry's surgery went very well today. He was very quiet this morning and finally, he asked us if he was going to be okay. Patrick and I both just hugged him and reassured him that he was going to be fine. Dr. Wattsman and the pediatric anesthesiologist, Dr. York, were just amazing with Henry and with us! They are both wonderful doctors. They and Carilion Roanoke Community Hospital rank right up there with Duke Children's Hospital and their staff. Dr. Wattsman said that she found Henry's hernia to be as large as an adult male hernia. He also had to have some fluid removed that had collected in the area of the hernia. She explored the opposite side to see if it had a hernia or the potential to develop a hernia and eveything looked normal there. When they brought him back to his room, he was wide awake-and talking as usual! He was able to drink COKE right away and they gave him Goldfish crackers. After an hour of cartoons and Gameboy, he told them he was ready to go home. We were able to leave the hospital by 10:30 am. He wanted to go get a new Gameboy game that he was promised for good behavior. He chose the Lego Star Wars game and hasn't stopped playing it since he got it. We then stopped to get some lunch and he acted totally normal.
He and Patrick have rested all afternoon and he doesn't seem to be in any pain. Please pray that the incision heals quickly and that he doesn't develop an infection. Thanks again to all of you who follow Henry on his website. The Moore's

Wednesday, August 3, 2005 1:18 PM CDT

Just wanted to give you a quick update for the surgery on Friday. Henry had a blood count drawn today to make sure that he had an adequate immune system before the surgery. His ANC(absolute neutrophil count) was only 870 and normal range is greater than 1000. Dr. Gehrz said it was okay to go ahead with surgery, so everything is still planned for 7:30am on Friday, August 5, 2005 at Roanoke Community Hospital. The surgery is planned as an outpatient procedure and I will update the webpage on Friday to let you know how he is doing.
Henry is taking Bactrim for the skin infections that he has had this summer and this may be the cause for the lower ANC result. We were hoping that his ANC would be higher since we have increased his Neupogen shot dosage from 1.5ml twice daily to 1.75ml twice daily. We will keep hoping for a jump in the numbers.
I haven't had time to load a photo on the website but I promise to do it this weekend. Take care and thanks for checking on Henry. The Moore's

Friday, July 29, 2005 8:38 AM CDT

Sorry for the missed update last Friday. We've been very busy the last few weeks. Henry has been wanting to go to the pool every day! A special thanks goes to "Miss Gail" for taking him to the pool while I was out of town for a conference. Henry is turning flips under water, doing hand stands under water, and doing the "cannonball" from poolside. He has really enjoyed this summer-and so have we! Henry's hernia surgery is still planned for Friday, August 5 and his Gran has offered to come to Virginia to help us out. He will be very excited about that. Until then, we will go to the pool every day to let him do what he loves. After the surgery, he won't be able to swim for 2 weeks.
Well, something that I would not have ever predicted, happened this week. Henry pulled 2 of his front bottom teeth on Wednesday night. We were all asleep and he woke Patrick to tell him that he had pulled his tooth-didn't bother to tell him that he had pulled 2 of them! I will get a photo uploaded on the website as soon as I get a chance. Now he is missing 4 front teeth-what a sight!
I would also like to mention two special boys that need recognition for something special. Zach and Holt Turk (with help from Aunt Kristie) hosted a lemonade stand that raised $102.51 for Henry's fund. They were so proud to do this and we were so surprised when they brought us the bag of money. Thanks to their Grandmother Beitz for purchasing the little book that helped them with the idea.
The 2 drives in Alabama added close to 250 new people to the bone marrow registry. We are very pleased for this and we want to thank everyone, especially my father, stepmother, 2 sisters, and brother-in-law for helping with the drives.
Thanks for continuing to check on Henry. The Moore's

Friday, July 15, 2005 7:55 AM CDT

We enjoyed our visit with Dr. Wattsman in Roanoke yesterday. She was amazed at how many questions Henry had about his upcoming surgery. Henry will have an inguinal hernia repair on Friday, August 5, 2005 at 7:30am at the Roanoke Community Hospital. I am sure many of you are wondering how this could have happened. We are too! This is anticipated as an outpatient procedure. He will have limited physical activity, including swimming, for 2 weeks after surgery. Last night, we read a book about going to the hospital for surgery and he says he is very brave and not afraid. I believe him. They say "knowledge is power" and after 100 questions yesterday, he now has the knowledge about the surgery. This procedure is considered urgent but not emergent. If the hernia causes part of his colon to lose blood supply, it could set up an infection and that would not be good for Henry. Right now the hernia will go away at night or at rest and will distend after he has been up for a while. So long as it does that, we can wait until August 5th. If at any time it becomes swollen or discolored, he would have to have the surgery right away. So, we will be watching him closely for the next few weeks and we will try to make as many trips to Pine Valley Pool as we possibly can.
We will keep you all posted. Thanks for your concerns. The Moore Family

Tuesday, July 12, 2005 4:21 PM CDT

Sorry for the missed update on Friday, July 8th. We were supposed to be driving to Mobile for the two bone marrow drives, but they were canceled due to Hurricane Dennis. Henry and Samuel were still in Mobile on Friday and we were trying to figure out how we were going to get them back to Virginia (with the road closings and heavy evacuation traffic). My Dad and Sheila drove the boys (along with my new Honda van) to Clanton (just south of Birmingham) and my Mother met them there for the drop off. Patrick and I arrived in Birmingham on Saturday morning, after sleeping in Knoxville on Friday night. We left Birmingham on Sunday before the Hurricane made landfall on the coast. Luckily, the Alabama coastline did not get hit nearly as bad as expected. I am so happy that we had our vacation on the Florida panhandle before the crazy weather started!
Okay, now for the Henry update. Patrick and I met with Dr. Gehrz on Thursday, July 7th and we decided a plan for Henry's transplant. We are going to try the in-vitro 2 more times this year with the intention of selecting a perfect match for Henry. We have our first telephone appointment with the fertility clinic tomorrow. If I am not pregnant after 2 attempts, then we will proceed with the 5/6 stem cell transplant early next year. We have decided to have the transplant at Duke as it is much closer to our family and friends. This is very important to us as it is a huge help with the coping and healing process. Henry will begin kindergarten in the fall and is very excited.
Now, for new information from today- Henry has developed an inguinal hernia on the right side. This could be very dangerous for him with his disease. We are seeing a pediatric surgeon in Roanoke on Thursday and I will update the website as soon as we know when the surgery is scheduled. As for the sores on his legs, they look great!
Also, I hope you are watching Peyton and AJ's websites. Peyton will start everything next week and AJ is growing new cells from his donor. Keep praying!
Thanks for keeping in touch and as always, your messages keep us hopeful.
Sincerely, Patrick and Angela

Friday, July 1, 2005 1:07 PM CDT

We are having a wonderful vacation in Destin, Florida. We are keeping clear of the sharks and Henry is swimming like a dolphin. Henry and Patrick had a wonderful time at the dolpin encounter. I will load the photos on this website when we return.
Don't forget the marrow drives in Mobile and Fairhope next weekend. Call or e-mail me for details.
I would like to say thank you to AJ and Peyton's family for your wonderful and supportive comments in Henry's guestbook. You don't know how much you have helped. Stay strong and we will be with you all the way.
Henry developed lots of infected sores on his legs just before vacation. He is on 2 oral antibiotics, prednisone, and his Neupogen dosage had to be adjusted. Henry's white count was too low to fight the leg infections. His neupogen has not been increased in 3 1/2 years so we are a little stressed. Thank God for our vacation!
Have a wonderful holiday weekend. I will update the website again next Friday.
The Moore's

Friday, June 17, 2005 10:49 AM CDT

Just wanted to update you all this week. We had the marrow drive at Riverlawn Elementary and tested somewhere around 40 people. We have a drive in Mobile, AL on July 9th and in Fairhope, AL on July 10th. Let me know if you need information on the Alabama drives. We are planning a drive in Roanoke, VA at Valley View Mall on Friday, August 12th from 12pm to 6pm. Let me know if you would like to help or need further information.
We received information this week that Henry has another 5/6 match on the umbilical cord registry. His transplant doctor at Duke sent us a letter stating that we will be taking a risk to delay the transplant long enough to have another baby. She said that this risk balances out the risk that we would take by proceeding with the transplant with a 5/6 match. Either way, we have a very hard decision to make. We just do not know what to do and we need your prayer.
We have decided to wait until after our vacation to talk with Dr. Gehrz about all of this. We want to enjoy our week in Destin, FL with our family. My sister is having her first child on June 20th-another boy in our family. Henry and Patrick will be able to have a Dolphin Encounter and Samuel wants to play putt-putt every night! Harper will just be along for the ride-something he is pretty good at by now. We are very excited about our trip. I may not post on the website until the week of July 4th.
Take a minute to visit Peyton's website. I have the link to it below. He will begin his transplant journey on July 20th. He also has Kostmann's and is 6 years old.
Thank you for your continued messages. The Moore's

Friday, June 10, 2005 2:14 PM CDT

Okay, I know you all are as anxious as we are, but we have not yet heard whether there are any matches for Henry. We do have a bone marrow drive scheduled in Mobile, AL on Saturday, July 9, 2005 and in Fairhope, AL on Sunday, July 10, 2005. I will update next week on location and times. There is a bone marrow drive here in Fairlawn, VA on Monday the 13th at Riverlawn Elementary School.
We are all healthy and counting the days until our beach vacation. I do have something interesting to share... I received an email from a lady who has a step-son born with Kostmann's Syndrome. His name is Peyton and he lives in Terra Hautte, Indiana. He will begin his stem cell transplant during the second week of July. I will post his website address as soon as she gets it up and going. I want all of you to travel this journey with him, send them prayers, and well wishes on the web-site. They will need our support. Peyton has a perfect match and he will do well. He is 7 years old and has a wonderful father and step-mother. We admire their brave decision to proceed with the transplant and we will watch his progress daily. Thank you all for continuing to view our website. We enjoy the messages. The Moore's

Wednesday, June 1, 2005 11:10 AM CDT

Okay, I told my father that I was going to tell on him. He thinks that I gave too much personal information in the last journal entry. I need to hear from you all if you like the entries. I just like to keep everyone up to date and make the entry as interesting as I can.
The people who were tested at the recent drives should all be on the NMDP registry by now. Early next week, we are going to ask Henry's Duke physician to check again for any matches. We will update the website as soon as we find out.
Henry is finally finishing up antibiotics for the MRSA infection in his arm. The area looks completely healed. We are using the Mederma kids scar therapy on it every night. The sore left a big red place. The stitches in his chin have now been removed and you can hardly tell he had them.
We took the boys to the pool over the Memorial Weekend and they loved it. They can't wait for our beach vacation later this month. (Neither can Mommy and Daddy.)
Courtney Hurd with Hendrick Motor Sports is organizing a bone marrow drive at Riverlawn Elementry School on June 13th from 10am to 5pm. This school is located in Fairlawn, VA. Please contact her at churd@hmsracing.com for more information. Also, let her know if you can volunteer to help with the drive. Thanks for your continued support.
The Moore's

Monday, May 23, 2005 7:10 AM CDT

I wanted to update you on the eventful weekend. If you missed the last few entries, just click on "read journal history". Friday evening, I went to a jewelry party and left Patrick home with the children. Henry and Samuel were in the basement playing and Henry fell. He landed on the large speaker to our surround sound system and split his chin open. Patrick loaded Henry and Harper and rushed to the ER. He left Samuel at home with cousin Johnny (thank God we were keeping him). Patrick tried to call me several times and my cell phone was on VIBRATE-lot's of good the cell phone was that day. He tried to call the house where I was and the phone was repeatedly busy. So, when I got in the car to come home, I had 7 missed calls on my cell. I knew then that something had happened. I called home, only for Johnny to tell me that Henry "did something to his chin and Patrick took him somewhere". I just put the car in the direction of the ER. When I questioned Patrick about where he was when this happened, he quickly responded that he wasn't on the "witness stand". I backed off and attributed the injury to the excitement of Star Wars and their new kitten. Yes, the boys got a new kitten named Callie. No, not after Patrick's sister. That was her name when we got her. She is beautiful and sweet.
Henry did great with the stitches. He has 4 and says they look like whiskers. His antibiotic was continued for 4 more days. The place on his arm looks great.
Thanks to Granny Duck who brought us a delicious meal on Saturday evening. The boys love the sidewalk chalk and are still fighting over the hotwheels!
Well, now you are up to date with the Moores. Take care and enjoy this beautiful weather. The Moores

Friday, May 20, 2005 8:05 AM CDT

Just wanted to update you on this week. The area on Henry's arm appears to be healed. He is still taking the antibiotic through tomorrow. He seems to be feeling well and so Patrick and I feel better too. The infection really scared us but Dr. Gehrz talked to us last week and made us feel much better about it. He said the infection would have been more resistant to antibiotics and more serious had Henry acquired it in a hospital environment. Since it was not, Dr. Gerhz feels like it will be easily treated. So far, he is right.
Henry started T ball this week and really enjoyed it. He was able to hit the ball all 3 times and didn't get tagged out. He didn't like playing the field position of third base very much. He stood out there with his glove on his head half of the time! Meanwhile, Samuel pouted in the car!
We really do have our hands full. Thank you for your support and comfort during this scary time.
The Moores

Friday, May 13, 2005 7:48 AM CDT

Just wanted to update you on this week. Henry woke up on Mother's Day with a red spot on his arm. The area was really angry red with a white head in the center. He never ran a fever, but the area looked progressively worse. We saw Dr. Gehrz on Monday morning and he cultured the drainage and gave Henry a powerful antibiotic shot. This was to be followed by an oral antibiotic, Duricef, for 10 days. The culture returned yesterday to be a staph infection that is resistant to methicillin-also known as MRSA. Dr. Gehrz changed his antibiotic to Bactrim for 10 more days. The red area is looking better and has a scab. This nasty bacteria is the worst infection he has had since he was a baby. Patrick and I both are really scared. Dr. Gehrz has reassured us that Henry will do fine on the antibiotic and the area will heal. We need your prayers to help him too. Henry started T Ball practice this week too. He will play on the Athletics team. Mary Johnston is his coach!!!
Also, we do not know yet whether the recent drives have produced a match. It will take until around June 1st for all of those tests to be added to the registry. Some of you may not know, but it took 13 days to get Harper's marrow type results back to us. We will update this page as soon as we know anything.
Thank you all for caring and for your sweet messages. Sincerely, The Moores

Sunday, May 1, 2005 8:02 AM CDT

More Good News to report.....About 150 people were tested in Birmingham, AL on April 22nd. Patrick and Henry were able to be on 4 television programs and that really drew people to be tested. 150 is a large number for a large city. Many of you have asked, so I wanted to explain that it takes about 6 weeks for the marrow typing to be added to the National Marrow Donor Registry. We will have Henry's doctor run his HLA type through the registry in about 2 months to see if there are any matches. The Heart of America is now planning another large drive in Mobile, AL. We are not sure of the date, but will update the page as soon as we know the details.
Thursday of this week delivered another blessing to our family. The results of the marrow test that was sent to Seattle came back. The test was looking for a problem where the marrow would stop reacting to the daily Neupogen injections. This, of course, would cause Henry to get terrible infections and need the transplant immediately. The results were positive and there was no problem identified-RIGHT NOW. Remember also that the regular test results were also positive. His hematologist/oncologist has recommended repeating the test in 6 months rather than annually.
Patrick, Henry, My father(Rick), and my brother-in-law (Jason) are all at the NASCAR race in Talledega. They are having a grand time. Rick Hendrick is currently out of the country and so Henry was not able to get to meet him. We have been invited to tour Hendrick Motorsports by Courtney Hurd who is a native of Fairlawn, Virginia and now works for HMS racing. We are excited about the invitation and will get that scheduled soon. While at the race, Patrick found and purchased the Hendrick Marrow bracelets. Jeff Gordon, a championship Hendrick Motorsports driver, recently made an impassioned plea asking that those who wished to offer their support to the Hendrick family do so by purchasing and wearing a blue wristband from the Hendrick Marrow Program. The wristbands carry the slogan, "Life is a team sport." All of the Hendrick fans and employees have been wearing these bracelets since the plane crash that killed Hendrick's family. Many children going through transplants have begun selling these to raise money for their transplant funds. Patrick and I will have these if you are interested. The Radford Red Cross has ordered youth and adult sizes and will have these for sale.
With the positive test results, we feel that the transplant is not so emergent. We will have the doctor run Henry through the marrow registry again in 2 months and hope for an adult or umbilical cord stem cell match. If there are none, we will begin to plan another child. Yes, I did just type that. We need your prayers and support. We will do whatever possible to save Henry. We have said that from day one. We can't imagine our family without him. We appreciate your thoughts. Thank you for visiting our website and for sharing our story with others.
Sincerely, The Moores

Wednesday, April 20, 2005 4:45 PM CDT

Wow! We have exciting news about the marrow drive. We tested over 500 people today! Over 550 people came to be tested, but some were turned away due to various health reasons. We are so thankful to those who drew blood, registered folks, donated money, checked health histories, managed the snack table and other duties related to the drive. There were so many kind volunteers today and we can't say thank you enough. We even had a student at a local school collect money to sponsor someone to be tested because this student wasn't old enough to be tested. We are also very appreciative to the local news stations and the papers. The coverage prior to the drive really contributed to the success.
Henry was able to be at the drive for part of the day and really enjoyed getting to help out and encourage folks to be strong. He also enjoyed showing off his new trophy.
Patrick was at the drive all day and was touched by all of your kind words of support. I was at the drive for several hours throughout the day and want you to know that we draw our strength from you!
It will take 4 to 6 weeks for these tests to be added to the registry. Henry's HLA will be searched on the marrow registry routinely and we hope that a perfect match will be located soon. A law student at W&M e-mailed today and told us that many of the students at W&M were recently tested and added to the marrow registry too. Patrick, Henry and Samuel will travel to Birmingham tomorrow for the marrow drive there. I will update this page as soon as I know how many are tested there. We remain hopeful and appreciate your kind words and gestures of support. Thank you again from the bottom of our hearts. Love, The Moore's

Saturday, April 16, 2005 5:50AM

We are very excited about the recent news coverage of the upcoming bone marrow drive. Henry just giggles when he sees his picture in the paper. He hasn't asked any questions about the articles yet. If you are interested in reading past entries in this journal, click below on "read journal history" and it will take you back to the last several weeks. We will try to update this page as we receive information and we hope that you will use it to follow us along this journey. We will update the page on a daily basis during the transplant process.
The next drive is at Carilion New River Valley Medical Center on Wednesday the 20th of April from 7:30 am to 4:30 pm. Call the American Red Cross at 639-2140 to get scheduled. If you know anyone in the Birmingham, Alabama area, there is a drive there on Friday the 22nd of April. Call us at 731-4849 if you need information about that drive.
Thanks for your interest and support. The Moore family

Tuesday, April 5, 2005 9:08 PM CDT

We are finally home from our overnight visit to Duke. The trip went very well. We arrived in Durham, NC late last night and had just enough time for Patrick and Henry to swim in the hotel's heated pool. This helped us all get a good night's rest. Henry's practice with his medical kit proved beneficial as he was a perfect trooper today. It took 2 attempts to get his IV started and he tolerated both WITHOUT crying! He also held the mask over his mouth to help the anesthesiologist get him to "sleep". He tolerated his bone marrow biopsy really well. This time, the biopsy site is on the front of his hip, on the boney part. He was promised a trip to Dick's sporting goods for soccer gear, a coca-cola, and a trophy for his brave spirit today. Tonight, he is shooting hoops and playing soccer with Samuel like nothing ever happened. We are still in awe of his strength. We will not know the results of the test for 10 to 14 days. We may get some preliminary results this week and we will update this page.
We sat next to a family in the waiting room whose 5 year old son had open heart surgery today. We do not know their names, but please say a little prayer for a quick recovery for him.
We need lots of prayers for peace of mind while we await the results of the biopsy. Thanks to all of you for carrying us through this experience. The Moore's

Saturday, April 2, 2005 8:58 AM CST

Our trip to Duke on the 31st went very well. It seems that the test on Henry's marrow will be the one piece of concrete information that will tell us how urgent this transplant is. Dr. Rosoff has scheduled the bone marrow biopsy for Tuesday, April 5th. This will be at Duke and under anesthesia. We will travel down on Monday night as the appointment is at 8:30am. Henry has been practicing "inserting" his own IV tube with his new "doctor kit" that Ms. Vivian gave him. She is one of the child life counselors and helped keep Henry busy while we talked to Dr. Rosoff. She introduced Henry to Sky Blue, who is a clown that visits the Rainbow Room every week. The Rainbow Room is where the transplant kids go to receive their medications on an outpatient basis after the transplant. It is wonderfully equipped with padded lounge chairs, televisions, video games and large windows! We learn more about this beautiful facility each time we go.
The test results won't be available for several weeks after the biopsy. We will keep the web page updated as we learn new information.
Another interesting note, Patrick has been nominated as a board member for the National Marrow Donor Program. He will soon submit his vitae and a letter of acceptance for the nomination. He will then fly to Minnesota (the location of the NMDP)for an interview. He is very excited about this wonderful opportunity to represent the parents/patients needing the services of the NMDP. We will keep you posted on that as well.
Your continued support keeps us forging ahead. Thanks to all of you. The Moore's

Wednesday, March 30, 2005 11:13 AM CST

We are taking Henry to Duke tomorrow on the 31st for his regular bi-annual appointment with his pediatric hematologist/oncologist, Dr. Philip Rosoff. Dr. Rosoff has been very clear that his opinion is to delay transplant at this time. We are so confused about this as Dr. Kurtzberg, the chief of the Duke pediatric BMT unit, is very clear that her opinion is that Henry needs a transplant this year. We are going to ask Dr. Rosoff to order the test on Henry's marrow that can predict whether or not he is going to convert to AML, the aggressive and deadly form of leukemia. That test will be performed at Duke, probably within the next month. We hope that the results of that test will help us make the final decision. If you missed information from our visit to Minnesota, please click on the "read journal history" and that will take you to that information.
We have a bone marrow drive scheduled in Radford on April 20th and in Birmingham, AL on April 22nd. Please call the American Red Cross in Radford at 639-2140 if you would like to be tested on the 20th.
We are all doing great and trying to get more sleep with the new baby. Angela is back to work full time and is enjoying that. Henry starts soccer practice today and will have his first game real soon. Call us for his game schedule if you would like to see him play.
Thanks to you all for your interest and comments of support. We enjoy reading your guestbook entries. Henry's page has now had over 1100 hits. We will update this webpage again after our visit to Duke tomorrow. Sincerely, The Moore's

Friday, March 18, 2005 7:08 AM CST

We awakened to lots of snow this morning here in Minnesota. Yesterday, we enjoyed a fun afternoon at the Mall of America topped off by a meal at Henry's favorite, The Rainforest Cafe! This area has had a mild winter so we have hardly had to wear our coats during our visit. We had no idea what to expect from our visit here. We were pleasantly surprised by the physician, Dr. Scott Baker. He specializes in transplants for non-malignant conditions. Henry's disease is currently in that category but it can convert to a very aggressive form of leukemia (malignant) at any given time. Dr. Baker recommended that we proceed with a transplant with the 5/6 umbilical cord and that we proceed this summer as we had planned. He quoted a 75 to 80 percent survival rate with the 10 to 15 percent of failure being caused by an aggressive infection or graft versus host disease(which means the transplant didn't take). He also recommended that we proceed with a test that can predict whether Henry would convert to the deadly form of leukemia. This test is done on his marrow and requires sedation. This test would give us some comfort in proceeding this summer with a less than pefect match. In regards to the facility, the rooms are huge with 3 large windows. All rooms function as a transplant room and can convert to an Intensive Care Unit room if needed. All of the nurses are trained as ICU nurses as well as transplant nurses. A link to what happens during the 100 days of transplant is located on Henry's homepage and we encourage you to view that. Their protocol calls for 9 days of a harsh chemotherapy regimen followed by the infusion of the stem cells(the transplant) and a wait period for the cells to engraft into his body. Most of this is similar to Duke so the decision process will be tough. We will sit down with Dr. Gehrz as soon as he receives the reports from both doctors and will make our final decision. I do not expect to update the page for about 2 weeks, so check back then. We are thankful for all of your kind messages and prayers. We know that your support is helping us maintain our strength. Thanks again to all of you. Sincerely, The Moore's

Wednesday, March 9, 2005 11:35 AM CST

We visited with Dr. Joanne Kurtzberg, Director of Duke's Pediatric Stem Cell and Bone Marrow Transplant Center, on February 24, 2005. This was the day after we discovered that Harper is not a perfect marrow match for Henry. We participated in the in- vitro procedure so that a "marrow-matched" embryo could be selected for the pregnancy. We were told that there were 2 perfect matches and I became pregnant with one baby. After the delivery, Harper's blood was taken and tested to "confirm" the match.
That is when we discovered that a mistake happened somewhere. Everyone involved with the pregnancy is baffled and so there is no explanation to give for this. This put us back to our original dilemma of not having a perfect match for Henry's transplant. During our visit with Dr. Kurtzberg on the 24th, she performed a search of the National Marrow Registry and the umbilical cord stem cell banks. No adult marrow matches were found, but an umbilical cord sample with a 5/6 match was found. This sample was from a female baby with B negative blood and it is located in a storage bank in St. Louis, MO. Dr. Kurtzberg said that she thought that Henry needed a transplant within the next year and that we should proceed as soon as possible. We toured the Duke transplant unit and met with the health care professionals that would be helping us through the process. We were told that Henry would have an 80 % survival rate with his current health and the 5/6 match. We are very afraid and want to be very certain that we are making the best choice. Therefore, we are going to the University of Minnesota to Fairview Children's hospital on March 17, 2005. There we will seek a second opinion from the facility director, Dr. Scott Baker. We will also meet the transplant staff and take a facility tour. We will meet with Henry's pediatrician, Dr. Gehrz, and make our decision after this visit. Please pray for us as we need your support during this difficult time. The Moore's

Friday, February 11, 2005

We are happy to announce that Harper Gray Moore has arrived. Gray was Patrick's father's middle name and his grandmother's maiden name. Patrick's dad died a couple of weeks ago. Harper was born at 1:00 am. The delivery was emergent, but thanks to the skill of Dr. Weston and the prayer of half of America, he was born healthy! Although three weeks early, he weighed 7lbs., 5oz. He has lots of BLONDE hair! Thanks to Dr. Weston and his wife and daughter, we believe enough of Harper's cord blood was saved for Henry's future transplant. Thanks to Mike and Mary Johnston, the cord blood was hand-delivered to Duke a few hours after Harper's birth. Harper's blood will be tested to confirm that he is a match for Henry. His blood tests just after birth indicate that, like Samuel, he does not have Ksotmann's. He is a beautiful and sweet and we are proud to be parents of 3 boys!-The Moore's

Wednesday, March 9, 2005 11:05 AM CST

We visited with Dr. Joanne Kurtzberg, Director of Duke's Pediatric Stem Cell and Bone Marrow Transplant Center, on February 24, 2005. This was the day after we discovered that Harper is not a perfect marrow match for Henry. We participated in the in- vitro procedure so that a "marrow-matched" embryo could be selected for the pregnancy. We were told that there were 2 perfect matches and I became pregnant with one baby. After the delivery, Harper's blood was taken and tested to "confirm" the match.
That is when we discovered that a mistake happened somewhere. Everyone involved with the pregnancy is baffled and so there is no explanation to give for this. This put us back to our original dilemma of not having a perfect match for Henry's transplant. During our visit with Dr. Kurtzberg on the 24th, she performed a search of the National Marrow Registry and the umbilical cord stem cell banks. No adult marrow matches were found, but an umbilical cord sample with a 5/6 match was found. This sample was from a female baby with B+ blood and it is located in a storage bank in St. Louis, MO. Dr. Kurtzberg said that she thought that Henry needed a transplant within the next year and that we should proceed as soon as possible. We toured the Duke transplant unit and met with the health care professionals that would be helping us through the process. We were told that Henry would have an 80 % survival rate with his current health and the 5/6 match. We are very afraid and want to be very certain that we are making the best choice. Therefore, we are going to the University of Minnesota to Fairview Children's hospital on March 17, 2005. There we will seek a second opinion from the facility director, Dr. Scott Baker. We will also meet the transplant staff and take a facility tour. We will meet with Henry's pediatrician, Dr. Gehrz, and make our decision after this visit. Please pray for us as we your support during this difficult time. The Moore's

Sunday, January 16, 2005 7:15PM CST

We have been blessed with another great year with Henry. He turned 5 years old on January 11th. He is in preschool 5 days each week and enjoys the time around other children. He has been very healthy this past year. We are expecting our third boy this winter. We have participated in an in-vitro pregnancy where an embryo that matches Henry's marrow type was selected for the pregnancy. The stem cells in the umbilical cord will be collected for the transplant. After the birth, we will tour 2 transplant facilites and decide where the transplant will occur. We have a very hard decision to make and we want to be most informed. Dr. Gehrz, his local pediatrician, has helped us with this daunting task. Henry will most likely begin the transplant process this summer. We first need to decide on the best facility and we need to make sure that the baby is actually a match and is not carrying the gene for Kostmann's Syndrome(less than 1 percent chance). We will try to update this page more often to inform you of the process. Once the transplant process begins, we will update the web page on a daily basis. Keep in touch. Thank you for all of your prayers.
-The Moore's

Monday, July 09, 2001 at 02:12 PM (CDT)

The Moore's are happy to announce that Henry is expecting a healthy baby brother in early November. Henry is learning to say "brother" and points to Mom (and Dad's) tummy and says "baby". We did find out in early July that this baby is not an HLA match for Henry. We were hoping for this, but we are very excited that the baby is healthy and does not have the Kostmann gene.
Henry continues healthy with wonderful blood counts. The doctors are amazed at his progress. He will visit his doctor at Duke on July 19th for a full physical which will check for any signs of Leukemia. This will entail a bone marrow aspiration and some additional blood testing. We expect good news.
Thank you for your continued support. We have a requested another formal search of the Marrow Registry as new people are added daily. We will update this web page as we learn new information. Patrick and Angela

Monday, April 16, 2001 at 10:24 AM (CDT)

Henry is doing very well despite losing his front tooth last weekend. Mom hurt much worse than Henry did. He saw the pediatric dentist and we hope to get a "replacement" tooth in about 6 months. His blood counts were declining a bit since January. The doctor finally decided to increase the dosage of the Neupogen since Henry is growing so fast. It apparently has worked. His counts were back up last week, but not yet to their previously, almost normal, levels.
We have another bone marrow drive scheduled for May 1st at New River Valley Medical Center from 7am to 5pm. Please spread the word to those who may not have been able to get tested last April and November.
We hope you enjoy the new pictures in the photo album. Henry had a wonderful weekend in Alabama during Easter and can't quit saying the word airplane.
We will keep you updated as we know any new information. Thank you for your continued interest and prayers. Patrick, Angela, and Henry

Sunday, March 18, 2001 at 07:30 AM (CST)

We are pleased to report that the marrow donation procedure was successful. Randal Duncan has now returned to work and suffered no pain from the procedure, just a little side effect from the anesthesia. He hopes to be introduced to the recipient in 1 year, pending the success of the marrow transplant. The Today Show was present for the entire procedure which included 40 minutes of marrow extraction. They will show an interview with the Duncan's as well as the procedure itself on a segment in May. I will update this page as soon as I know the exact date.
The 15th match from Henry's Bone Marrow drives was notified last Thursday. So far, Randal is the only one to complete the marrow donation procedure. We expect many more to donate in the future. Thanks again to all who have been tested.
Henry continues to do well. We are excited to report that he is expecting a sibling in November. It would be a miracle if this baby could be the donor. We hope to learn the new baby's HLA Marrow Type by amniocentesis sometime in late May or early June.
Thanks again for your constant thoughts. Patrick, Angela, and Henry

Sunday, March 04, 2001 at 09:04 PM (CST)

The guest book messages have been wonderful to read. Thanks to all. We hope to update this web page weekly with any new information that we have. Randal Duncan will donate his marrow on Thursday, March 8, 2000. Patrick wants to learn as much as he can about the procedure and will go to Baptist Hospital with Randal and his wife, Julie. We expect that News Channel 7 with Theresa Hamilton will be there as well. Check the news at the end of this week. We also may get a spot on a National News Program this week. I will update this page as soon as I know when and what station. Henry started walking last Monday evening and has been hard to catch since. Take care, Patrick and Angela

Sunday, February 25, 2001 at 09:03 AM (CST)

Last week the 14th (we think), a person who was tested at Henry's drive was notified that he may be a marrow match for someone in need! Randal Duncan, who is the Commonwealth's Attorney in Radford, and who shares an office with me, is a perfect match for a 48 year old woman. He is going to donate his marrow on March 8th! We are really proud of him and are excited for the recipient and her family. It has been an emotional event for all of us. Keep them in your thoughts and encourage your friends to be tested! Please also remember that marrow recipients are in need of blood products after their transplant. You may help by donating blood or platelets at your local blood bank if possible. We added a picture of Henry this weekend. Check it out. Patrick and Angela

Sunday, February 04, 2001 at 05:48 AM (CST)

We just celebrated Henry's first birthday on January 11th. He is growing so fast and learns new words daily. He has been very healthy this winter with the exception of a sore throat in December and again in January. With the daily injections of Neupogen, his blood counts are stabilized at a level that enables him to do just about anything. When he becomes ill, his blood counts do drop to dangerous levels, but they miraculously return to their previous level. We still do not have a donor for Henry and we will have another marrow drive this Spring. As soon as a suitable donor is located, Henry will have his bone marrow transplant. Thanks for your thoughts and prayers. Patrick and Angela

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