History

Monday, June 14, 2004 11:30 PM

Hello Friends and Family,
Happy Summer!! We are all doing well and excited that summertime is here! Sean graduated from Pre-K at Oreland Presbyterian Church and he will be off to Kindergarten at Holy Martyrs in September. Patrick finished school this past Friday and he is now a big third grader. We had a very busy spring with both boys’ activities and it has been wonderful to be back to a somewhat “normal” routine.

Sean played tee-ball this spring and enjoyed being part of the team. It was a little difficult for him to play using his crutches, but he is determined to try just about anything. Sean just started playing Sled Hockey! It is similar to ice hockey, with the biggest difference being in the equipment used. Players are strapped into small sleds with two skate blades fixed to the bottom of the seat. Instead of one long stick, sled hockey players use two short sticks with metal picks on one-end and hockey stick blades on the other. Pick ends are used by players to propel themselves across the ice, and when it is time, the player flips the blades down and handles the puck. Sean practices every Friday night and loves playing! Patrick just finished baseball and roller hockey. His hockey team won the championship game yesterday with Patrick in goal—way to go PAT!

This past Saturday we celebrated Sean’s 1-year post-transplant and we are so thankful. It is hard to believe that a year has gone by since his transplant. Sean has been feeling well and looks great. On June 1 he had an appointment with Dr. Bunin (Transplant Team). Sean’s exam went well, had 12 tubes of blood drawn for testing, and he started receiving his immunizations again and he had to receive 5 vaccines --OUCH. While we were at CHOP that day we did have fun visiting some friends and his favorite nurse Lisa, played hospital BINGO and meet a new friend-Ryan. Ryan is a 3 y.o. little boy who lost his right leg in January due to cancer. Within minutes of meeting each other, Ryan and Sean were off to the playroom to have some fun. We are back down at CHOP at the end of June for his app't with his oncologist, Dr. Womer.

This past Saturday we attended Alex’s Lemonade Stand (raises funds for Pediatric Cancer Research) in Wynnewood. Alex (8 y.o.) is a friend from CHOP who has been suffering from cancer since she was an infant. This little girl’s story is amazing and her goal this year is to hopefully raise one million dollars to help find a cure for childhood cancer. Tomorrow we are heading to D.C. for the National Childhood Cancer Foundation’s Gold Ribbon Days. This is an annual event to help raise awareness of childhood cancer and the importance of research funding. We are looking forward to our trip and bringing Sean’s story to Capital Hill, and we hope to do lots of sightseeing.

I will post some new pictures, especially one of Sean playing sled hockey. Only 6 more weeks until the “Run For The Hill Of It” on July 31st. We are looking forward to Sean’s big day! We hope you can attend.
Love, Joanne and Bill

P.S. Sean has be chosen as the recipient of the Friends of Eric “2004 Run for the Hill of It”. This is an annual event held in Chestnut Hill that celebrates and supports a child with a severe illness or medical handicap. We are very touched that Sean was selected to be the 2004 recipient.

We hope you can attend the 17th Annual Friends of Erik "Run for the Hill of It"!
5 Mile Run & 1 Mile Fun Walk
Sean’s Picnic following the Run
Saturday, July 31, 2004
Chestnut Hill, PA

Annual Gala Dinner Dance to be held on October 16, 2004

www.runforthehillofit.org

Friday, April 9, 2004 9:44 PM CDT

Hello Friends and Family,
It has been awhile since we updated last, but we are all doing well. Sean started back to school on March 1st. After 9 long months of isolation from normal activity, he has been so excited about doing all the fun things a 5 y.o. likes to do—playing with friends, school, family outings etc. Sean had his first tee-ball game last night and did great. Bill and I were holding back (happy) tears as Sean was up to bat -- balancing on his one strong leg, he hits the ball and crutches down to first base. He is our amazing little boy!

Sean was down at CHOP two weeks ago for a CAT scan under general anesthesia, and he saw Dr. Womer at CHOP Wednesday for his check-up. Everything is FINE – CAT scan, chest x-ray and blood counts are all FINE. Our prayers continue to be answered. Sean next appointment at CHOP will be with the Transplant Team for his one-year post-transplant checkup. This will be the time when we find out whether Sean will be able to discontinue his daily medications that he has been on since transplant. Sean will also start to receive all of his baby immunizations all over again due to the transplant. I am not looking forward to that because he hates getting shots. Dr. Womer’s next appointment is scheduled for the end of June.

It has been wonderful getting back to a “normal” family routine. We are looking forward to a great spring and summer, especially since last spring and summer were such a blur. Thanks for checking in and please continue to keep Sean in your prayers for continued remission. Happy Easter!
Love, Joanne

P.S. Sean has be chosen as the recipient of the Friends of Eric “2004 Run for the Hill of It”. This is an annual event held in Chestnut Hill that celebrates and supports a child with a severe illness or medical handicap. We are very touched that Sean was selected to be the 2004 recipient.

We hope you can attend the 17th Annual Friends of Erik "Run for the Hill of It"!
5 Mile Run & 1 Mile Fun Walk
Saturday, July 31, 2004
Chestnut Hill, PA

Annual Gala Dinner Dance to be held on October 16, 2004

www.runforthehillofit.org

Tuesday, February 3, 2004 9:38 AM CST

Dear Friends and Family,
Happy New Year! We were very excited about ringing in 2004!

Sean did get the flu and ended up overnight at CHOP right before Christmas. We arrived home from the hospital at 9:30 p.m. on Christmas Eve—just in time for SANTA. Thank you LaSalle College High School Alumni for the wonderful gifts that were delivered to our house on Christmas Eve morning by Santa and his Elves! Your thoughtfulness helped make our Christmas extra-special.

Sean had his check-up with Dr. Womer on January 21st. His chest x-ray and counts were fine. He has been feeling well and looks good. We received great news that Sean will be able to go back to preschool as of March 1st – HOORAY!! Mid-March will be 9 months post-transplant, which means we can slowly start to get back to a more “normal” life (attend school, church, play dates, etc.). Sean has been such a trooper during these long months of isolation, but our time together as a family has given us opportunity to really enjoy and appreciate the simple things of life.

Sean is due back to CHOP in March for scans and check-up. Please continue to pray for Sean’s continued remission. Thanks for checking in.
Love, Joanne

P.S. Sean has be chosen as the recipient of the “2004 Run for the Hill of It”. This is an annual event held in Chestnut Hill that celebrates and supports a child with a severe illness or medical handicap. We are very touched that Sean was selected to be the 2004 recipient.

We hope you can attend the 17th Annual Friends of Erik's "Run for the Hill of It"!
5 Mile Run & 1 Mile Fun Walk
Saturday, July 31, 2004
Chestnut Hill, PA

www.runforthehillofit.org

Saturday, December 20, 2003 10:32 PM

Dear Friends and Family,
HAPPY HOLIDAYS! Sean has been doing great, feeling well and very excited about Santa. Besides having cabin fever, we all have been healthy (no colds, flu, etc.). Sean should have only a couple of more months of restricted isolation, and hopefully he will be able to start back to pre-school sometime in March. He really misses his friends and school.

Sean's next appointment with Dr. Womer at CHOP is on January 21st. Please continue to keep him in your prayers! Thank you all for the love, support and prayers during this difficult year. Your kindness means so much to us. Wishing everyone a Blessed Christmas and a Happy & Healthy New Year!

Love, Joanne, Bill, Patrick and Sean
P.S. Check out new photos of the boys!

Thursday, November 13, 2003 10:00 PM

NEW PHOTOS ADDED!

Wednesday, October 29, 2003 10:58 PM

Sean had a CAT scan of his spine and pelvis yesterday under general anesthesia. He did well during the scan and was not too cranky when he woke from the anesthesia. Dr. Womer called this afternoon to tell us that his scan looked fine. We are so relieved! Sean's next appointment with Dr. Womer is in January, and hopefully we will not have to make any trips to CHOP before then.

Sean, of course, continues to amaze us all. With everything that Sean has been through, he rarely complains. His funny, energetic personality brings us so much joy. Sean and Patrick are very excited about Halloween. We will post new pictures shortly. Our family appreciates everyones thoughts and prayers. We have been blessed by all of you in so many ways!
Love, Joanne, Bill, Patrick and Sean

Thursday, October 23, 2003 11:22 PM

Sean is 4 months post-transplant and continues to do well! We were down at CHOP yesterday for his routine visit. At this point, Sean is transferred back to his oncologist, Dr. Womer from the bone marrow doctors, and Dr. Womer will be monitoring his Rhabdo and MDS.

Sean's exam went well and his chest x-ray was clear. Tuesday he will have a CAT scan of his pelvis/spine. With high hopes that everything is okay with his scan, Sean does not have to see Dr. Womer again for 3 months. It seems like such a long time and makes me nervous, but it will be nice not to be at CHOP so often. Sean has received such wonderful care at CHOP and we are so thankful.

Sean is getting a little bored with mom, but we are managing to think of fun things to do to keep us busy. Sean really does miss his cousins and friends. He has been such a good sport with being stuck at home. So far we all have been healthy --no colds, etc.-- and hopefully this will continue until Sean's immune system is back to normal.
Thank you everyone for your continue thoughts and prayers. Your support means so much to us.
Love, Joanne

Sunday, September 28, 2003 9:38 PM

(Day 108) Hi Everyone!
Sean reached 100 days post-transplant with no major complications and we are so thankful. He looks great and he almost has a full head of hair. Sean’s visit at CHOP this past Tuesday went well. His blood counts continue to rise and this is a good indication that things look good. Sean still has close contact restrictions with others (especially children) because of cold and flu season. If he gets a fever it is an automatic admission to the hospital, so we have been playing it safe and staying close to home. We are definitely starting to get cabin fever, but we are so happy to be home and not in the hospital. In about a month or so, Sean will probably stop seeing the bone marrow doctors and be switched back to his oncologist, Dr. Womer. Dr. Womer will monitor his rhabdomyosarcoma and myelodysplastic syndrome from that point. Our fears about relapse are overwhelming, however today he is doing great and we need to hold onto that.

Today, Patrick and I attended The Parkway Run/Walk for Children’s Cancer Research in honor of Sean. Special thanks to: Mrs. Archie, John Michael, Rick, Aunt Maureen, Matt, Aunt Suzy, Kristen, Kyle, Aunt Leenie, Uncle John, Jake, Baby Sara, Ann, John, Jillian and Grandmom & Grandpop Mahoney, for joining us for this special event.

Sean recently received wonderful news that he will be the recipient of the “2004 Run for the Hill of It”. This is an annual event held in Chestnut Hill that celebrates and supports a child with a severe illness. We are very honored that Sean was selected to be the 2004 recipient. Our family continues to be touched by the kindness of family, friends and other caring supporters – THANK YOU. Please continue to keep Sean in your prayers as he continues on his long road to recovery.
Love, Joanne, Bill, Patrick and Sean

Tuesday, August 28, 2003 11:00 PM

(Day +75) Hi Everyone!
Sean is doing great! Except for a minor infection that was treated with antibiotics, Sean has been feeling well. We were down at CHOP today for his oncology visit with Dr. Bunin. He received his bi-weekly Gammaglobulin (IVIG) medication today in the day hospital. This medication helps prevent a serious pneumonia. Hopefully Sean will only have to receive IVIG a couple of more times – he will definitely not miss being hooked up to an I.V. pole. Sean’s Graft vs. Host Disease symptoms have disappeared and he was discontinued on his steroids two weeks ago – Yeah, his chubby cheeks have disappeared! Next visit (in 2 weeks) his doctor will discontinue the medication that treats Graft vs. Host Disease and Sean will be down to 4 oral meds. We received good news today that Sean’s bone marrow (from 7/10/03) showed 95% donor cells! Our prayers are being answered – thank you everyone for your continued prayers!

SIGNS OF CHILDHOOD CANCER
Continued, unexplained weight lose
Headaches, often with vomiting, at night or early morning
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash

Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent fevers of unknown origin

Approximately one in 330 children will be diagnosed with cancer by age 19. Although it is unlikely that your child will develop cancer, as a parent, you need to be aware of the symptoms of childhood cancer. Observe your child for any sudden, persistent changes in health or behavior as listed above. Since most of the symptoms of cancer can also be attributed to benign conditions, the diagnosis of cancer can be a long process. You must trust your own instinct and work as a team with your doctor, using your knowledge of your child and your doctor’s knowledge of medicine to protect your child’s health.
(Gold Ribbons for Childhood Cancer – www.goldribbons.com)

Thursday, July 24, 2003 11:00 AM

(Day +42) - NEW PHOTOS ADDED!
Sean has been doing well. We have had no unexpected visits to CHOP other than his Tuesday Oncology clinic visits. Sean's blood counts continue to rise and his Graft vs. Host Disease remains mild.

It has been almost three weeks since Sean was discharged from the hospital. His misses playing with his friends and being out and about, but we have been enjoying our days at home with eachother. Sean did have his first visitors over -Grandmom & Grandpop Mahoney- and was very excited to see them.

Patrick is enjoying his summer. Last week he spent the week down the shore with our good friends, The Wilsey's, and had a great time. Bill took two days off from work to be with Sean and I was able to spend a few days down the shore with Patrick. It was a nice and relaxing getaway!

Thanks for checking in! Love, Joanne

Thursday, July 10, 2003 10:54 PM

(Day +28) It’s great to be home and Sean is doing well!! Sean and Patrick have been playing together non-stop since Sean came home on Friday. They missed each other so much. Sean is eating fine, full of energy and taking his five oral medicines twice a day with little complaining.

Monday and today Sean was seen at the Oncology Clinic at CHOP. He has been a real trouper about staying in his stroller or on Mom’s lap and wearing his mask. Of course, I dread our visits to CHOP because of all the germs. Sean will be seen for weekly checkups on Tuesdays and then eventually the weekly visits will spread out. Sean’s blood counts have been increasing nicely and he will probably not need any more transfusions of platelets or red cells! Today his Broviac catheter was removed and he had a bone marrow aspiration (results in two weeks) under general anesthesia. We are relieved that his catheter is out. His rash from the Graft vs. Host Disease is much better and today his doctor began to taper the steroid he is taking.

Our family is so grateful for all of the prayers, love and generosity that we have received from family, friends and other caring supporters. Special thanks goes to Sean's medical team at CHOP for taking such great care of Sean during his transplant. Please continue to keep Sean in your prayers as he continues on the road to recovery. Thank you!

Saturday, July 5, 2003 10:00 PM

(Day +23) SEAN IS HOME! After 33 days in the hospital, we are so happy to all be together at home. Sean was discharged yesterday feeling well and he looks great. He arrived home with Dad at about 1:00 p.m. Patrick and friends --John Michael, Alyssa and Evan-- made Sean’s homecoming extra-special by decorating the outside of our house with posters, balloons and 4th of July decorations. Sean was so excited!

Sean’s doctors and nurses were amazed at how well he did during chemotherapy and transplant. Our prayers are being answered and we are so thankful. Sean’s new bone marrow is now making enough white cells to handle minor bacterial infections. His Graft vs. Host Disease has been mild and we hope that the steroid that he is on will start to be tapered next week. Sean will have some limits to where he may go, and he has five oral medicines to take, but these will lessen over the next twelve months. For the first four weeks at home, Sean can only be around immediate family and for the first three months after transplant he will have to wear a mask when he goes outside our home. We were also advised to keep Sean out of crowded places (shopping malls, church, school) for nine months. We will be making many visits to the Bone Marrow/Oncology Clinic at CHOP for doctor visits and to monitor blood counts, etc. We go back down to CHOP Clinic on Monday and I am already a nervous-wreck because of the germs he will be exposed to. I might just have to strap him to his stroller.

The next hurdle for Sean is from now until Day +100 (Bone Marrow Transplant was Day 0). We hope and pray that he has no serious complications/infections that will land us back in the hospital. We have been taking each day as it comes. Our faith, hope and positive thoughts are helping us though this difficult journey. We are grateful to everyone that has helped us along the way, and know that God is watching over us. Love, Joanne

Monday, June 30, 2003 7:30 PM

(Day +18) Today Sean has been in the hospital for one month. The days are definitely getting longer and longer and we can't wait to be discharged. Sean continues to do well, however he has just started to show signs of Graft vs. Host Disease (GVHD) (skin rash on palms of hands and sole of foot--similar to a sunburn). GVHD is very common after a bone marrow transplant and can be mild to very serious. Since Sean's match to Patrick's marrow was the best possible match, his doctor's are hoping that the GVHD is mild. He has been taking medicine to prevent or treat GVHD since transplant, and he will also be starting on a steroid to control the GVHD. The doctors did tell us that it is good to have a mild case of GVHD because it is a good sign that the new cells are growing and doing what they are suppose to do (if that makes any sense).

They are starting to prepare Sean for discharge, which will probably not be for another week or so. As of today, Sean is off of the IV nutrition. He is eating and drinking very little, but hopefully, that will increase soon. All of his medications are being taken orally--YUCK--instead of IV. He has been receiving blood products (platelets and red cells) every 3 or 4 days. As his counts continue to climb he will not need the blood products as often.

We are so thankful that Sean has felt pretty good during this long hospital stay. We have had fun days with some of his favorite hospital activities -- target shooting with wet toilet paper balls, bathtime with syringe water fights and tossing water-filled rubber gloves, watching movies, art and music therapy, reading, and talking on the telephone. Thanks for checking in! Love, Joanne

(Day +19) Tuesday, July 1st
Just a quick note of good news -- Sean's counts are moving up and he is allowed to take a walk outside of his room (wearing a mask) YAHOO! Keep your fingers crossed--we may be home by the end of this week!

Tuesday, June 24, 2003 5:39 PM

(Day +12) We received good news today that Sean had 25 cells counted, which means his new cells are engrafting!! Sean is feeling good and continues to show no signs of infection. His hair fell out over this past weekend and he does not seemed too bothered about it--and, of course, he still looks adorable! Sean has done extremely well through this first hurdle (chemo & transplant) and his next hurdle is from this point until discharge. We are looking forward to our family being home together, hopefully soon. Aunt Suzy is coming tonight to be with Sean while Bill and I go out for dinner. Thanks Aunt Suzy!

Sean would like to send a special thanks to his buddy Andrew and friends at United Friends School in Quakertown. Thanks for all of the great cards! Love, Sean

We appreciate everyone's continued support, thoughts and prayers. Love, Joanne

Wednesday, June 18, 2003 2:56 PM

(Day +6) Sean continues to feel pretty good while his counts continue to drop. The doctors say he is doing very well, however we should be prepared for fevers, mouth sores and infections during the next 8 days or so. Around Day +14 we hope to see signs that his new healthy cells are growing and his blood counts start increase. We are keeping our fingers crossed that he does not have too many bads days.

Seans spirits have been good and he definitely has be challenging his nurses and doctors during taking his oral meds and daily examinations. He is great at using the stalling technique and his favorite one is "But I have to tell you something first!" Sean has been a real trooper being confined to his hospital room with just Mom or Dad and his toys and TV. We are thankful that he is content most of the time. He definately misses Patrick and our home. Patrick bounced back fast after his procedure on Thursday. The next day he took it easy and spent the day with his cousins Anne and Molly, and by Sunday he played in his championship roller hockey game and his team Won! Yeah!!

Sean would like to send special thanks to his OPC preschool-teachers and friends for the great GET WELL TRAIN and also thanks to Holy Martrys School for the many special train GET WELL WISHES. He has the two trains going all the way around his room. It looks great! THANKS! Love, Sean

Thanks to everyone for their warm thoughts and prayers. We appreciate your kindness.
Love, Joanne

Thursday, June 12, 2003 11:06 PM

(Day 0) TRANSPLANT/HAPPY BLOOD DAY TO SEAN! Sean received Patrick's cells through his catheter at about 5:15 p.m. today. It was a very special day for us. Patrick did great through his procedure and we are very proud of him--he gave his brother a very, very special gift. Sean and Patrick were very excited to see eachother. Patrick visited with Sean before his procedure and then again tonight. It was so nice to all be together. Bill and Patrick headed home about 9:30 tonight and Patrick was feeling pretty good. He did well with the anethesia and will probably have some back pain from the operation. The doctors collected more marrow than they had planned (which is good) and we were told that the cell count was good! Now the difficult time begin as we wait for his new healthy cells to grow up and PRAY that he does not have any serious complications while his blood counts are down. Sean tolerated the chemotherapy very well and he has been feeling good and his spirit have been great. We are very thankful for his good days so far and we continue to pray that there are not to many bad days ahead. One day at a time. Thanks to everyone for their continued prayers and warm wishes.
Love, Joanne

Sunday, June 8, 2003 10:45 PM CDT

(Day -4) I came home on Friday for the weekend and Bill is taking care of Sean at CHOP. Yesterday Sean started the I.V. chemotherapy that will continue until Tuesday. Bill said so far he has tolerated the chemo okay and has only experienced nausea and decreased appetite. Wednesday will be a day of rest and Thursday is scheduled to be the day Sean will received Patrick's healthy cells. Patrick seems to understand what will happen on Thursday and hopefully some day he will know what a wonderful gift he has given to his brother.
It was nice to be home for the weekend and spend time with Patrick. Today Patrick was goalie in his playoff hockey game and his team WON!! He was very excited and next Sunday is the championship game.
I will be back down at CHOP tomorrow morning for the week. Please continue to pray for Sean and say an extra pray on Thursday--Transplant Day--for both our boys! Thanks
Love, Joanne

Wednesday, June 4, 2003 1:42 PM CDT

Sean is doing fine and is having physical therapy in his room now, so I am taking a little break in the Family Library to update his web page.

Monday, June 2 (Day -10) Sean was admitted to the hospital for Bone Marrow Transplant. Sean had a Cat Scan of his chest in the morning because after review of his previous scan the doctors saw a very very small something on his lung and the wanted the scan to be repeated. There was no change on the new scan and we were very relieved (it probably is scar tissue?!).

Tuesday, June 3 (Day -9) Sean has been doing fine so far. He is taking many oral medications including oral chemotherapy. The highlight of Sean's day was his favorite nurse Lisa was in to take care of him last night.

Today (Day -8) Sean is starting to challenge us a little with taking his medication. He still continues to feel fine and we are told that the first four days are the easy days. His ANC (blood level that fights infection) dropped below 1000 today, therefore anyone entering his room needs to wear a mask, gloves and gown. He is full of questions and of course keeping everyone entertained with his silliness. Surprisingly, the first couple of days have gone by quickly.

Bill will be staying with Sean this weekend and I will go home and spend time with Patrick. I will update again over the weekend.

Love, Joanne

Friday, May 23, 2003 9:10 PM

Sean saw Dr. Womer this past Wednesday. His CAT scan and Bone scan showed no evidence of disease. All of his other work-up for transplant is done and Sean’s admission date to CHOP will be Monday, June 2nd and June 12th will be the harvest (when Sean receives Patrick’s marrow).

We have started preparing the boys for Sean’s admission. Hopefully giving them some information, little by little, before the admission will help ease the changes in our family routine. The other day we were playing hospital – Patrick was the nurse, Sean was the doctor and I was the patient! The boys had fun playing with real medical supplies -–masks, surgical gloves, bandages etc. One thing lead to another and I was in the operating room having some of my bone marrow removed by Dr. Sean and Nurse Patrick. The boys had fun operating on mom and it was the perfect opportunity to have some more discussions about the hospital and the transplant.

Sean continues to feel fine and his energy level has not slowed down one bit – Thank God! Today was Sean's Preschool Graduation. He looked so adorable on stage singing with all of his friends. We are so thankful that he was able to finish out the school year that was filled with fun times with friends and wonderful teachers!

As June 2nd draws near our anxiety level increases. Please continue to keep Sean in your prayers. We will have a computer in Sean’s hospital room, so we will be able to update his web page daily. Thanks for checking in and don't forget to sign the guestbook – we appreciate all of the loving and caring messages.

Love, Joanne

Thursday, May 15, 2003 10:19 AM

Tuesday, Bill and I meet with the Director (Dr. Bunin) and the Nurse Practitioner of the Transplant team. Dr. Bunin explained what we could expect during Sean’s admission for a bone marrow transplant.

Sean will have a bone marrow transplant and his donor will be his brother, Patrick. Sean will receive chemotherapy for the first eight days in order to destroy his own bone marrow, day nine will be a day of rest and day ten will be when Sean receives Patrick’s bone marrow. Sean will be very sick from the chemo drugs, but hopefully the antinausea drugs will help. We were told that he would stop eating after 4 days into the chemo and he would receive IV nutrition. He will be on a lot of medication in order to prevent infection and other potential serious complications.

Sean will be in isolation for his entire hospital stay, which is usually 4 weeks (minimum). We were told that we would not get much rest. Bill and I are planning on alternating staying with Sean in order to give eachother time to caught up on sleep and spend time with Patrick. We have strict rules that need to be followed to help protect Sean from possible infection. No flowers, plants, balloons, stuffed toys and food will be allowed in Sean’s room. Sean may have visitors, however no children are allowed to visit. The only time Patrick will be able to see Sean will be the day of the transplant.

Dr. Bunin told us that we could decide when Sean would be admitted – we think around June 2nd. This will give us some time to process this nightmare and also to have time together before the admission. We are still waiting on results of the CAT Scan and Bone Scan. Sean has two more appointments before his admission – to see the dentist and appointment with Dr. Womer on the 21st.

The love and prayers that we have received during this difficult time has been a tremendous support to our family – THANK YOU!

Thursday, May 8, 2003 11:15 PM

This week has been busy with appointments in preparation for Sean’s upcoming admission for transplant. Patrick had his donor work-up done on Tuesday. Patrick did great up until he had to have his blood drawn. After much hysteria and then being poked, he said, “that was not to bad!” The nurse practitioner explained to Patrick about the transplant and about the operation he will have in order to collect a small amount of his bone marrow (called harvest) for Sean. Patrick seemed okay with everything. We are so thankful that Patrick and Sean are a perfect match. Sean had a CAT scan today and will have a bone scan on Tuesday. Once all the test results are back for Sean (and Patrick) we will have a better idea of an admission date for Sean –probably in two weeks. Our family meeting is on Tuesday afternoon with the Transplant team.

Our family is heading to the shore for the weekend. We are looking forward to getting away for a fun, relaxing weekend together. Have a nice weekend!
Love, Joanne

Wednesday, April 30, 2003 9:20 PM

Sean went to the Clinic today to have his blood counts checked. Counts were fine, so it was a short visit!! His counts will be checked again in one week. Our family meeting with the Transplant Team has been scheduled for May 13th – so we will have more news then.

Sean has been feeling good. To look at him you would never know that he is sick. He has been going to school, enjoying outings with (as Sean says) “Just Me and Mom”, bike riding with Dad, and most of all loves just being home and playing with Patrick.

Thanks for checking in.
Love, Joanne

Wednesday, April 23, 2003 9:46 PM CDT

This morning, Sean had an appointment with his oncologist, Dr. Womer. Exam and blood counts were okay and still waiting on results of the bone marrow match.

Dr. Womer called late this afternoon – Patrick is a match (Patrick does not know about this yet). Bill and I are filled with mixed feelings – good news! about the match and anxious that Sean will be going through transplant soon.

The next step will be meeting with the Bone Marrow Transplant Team to discuss the risks and benefits of the transplant. We will also ask for advice from the Transplant Team about how to explain to Patrick about donating his marrow to his brother. From what we understand, Patrick’s procedure for donating bone marrow will be done under general anesthesia. Less than 10% of his marrow will be collected, an amount that will be fully replenished within a few weeks.

Thanks for checking in and we will update soon.
Love, Joanne and Bill

Wednesday, April 16, 2003 10:05 PM CDT

Sean had an appointment at CHOP today. Results are still not back regarding the bone marrow match. Sean’s exam and blood counts were fine. Our next appointment with Dr. Womer is in one week. We should have more news next week.

Sean continues to feel fine and is full of energy! Thank you for all the wonderful messages, phone calls, thoughts and prayers. We really appreciate everyone’s kindness.
Love, Joanne

Thursday, April 3, 2003 9:07 AM CST

Hi Everyone,
Yesterday we had our meeting with Dr. Womer. Sean has been diagnosed with myelodysplasic syndrome (MDS). MDS means that the bone marrow does not function normally and produces immature blood cells. MDS usually progresses to become acute myeloid leukemia (AML), and therefore, Sean will need a bone marrow transplant soon. Patrick, Bill and I were tested to see if we are a match for Sean – results in 2-3 weeks (PRAY that one of us match). If we do not match, they will look for a match in the national bone marrow registry and this will delay the transplant. Sean returns the see Dr. Womer in 2 weeks for blood counts.

Sean is feeling fine and is full of energy. He went to school on Monday and had a great time with his friends and teachers. The excitement of the day was watching baby chick eggs hatch. Yesterday afternoon Sean, Patrick and I went to visit the 11 fluffy chicks before they go back to the farm. I think we got some good pictures of the boys holding the chicks.

Bill and I are just trying to take a step/day at a time. We would like to thank everyone for their love, support and continued prayers.
Love, Joanne

Saturday, March 29, 2003 8:53 PM CST

This week was a very long and stressful. Sean had many tests including a bone marrow biopsy and placement of an indwelling catheter. Dr. Womer (Sean's oncologist) explained that Sean has either Myelodysplasia (preleukemia) or Acute Myeloid Leukemia (AML). Dr. Womer will meet with us on April 2, however this may be postponed if all results are not back and/or he needs more time to figure out a treatment plan.

We will update after our meeting with Dr. Womer. Thank you for your thoughts and continued prayers.

Love, Joanne

Friday, March 21, 2003 9:22 PM CST

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