Miss Diddle gets a haircut

Feeling well

I know we have been updating the blog pretty often this week but haven't said much about how Eden is feeling.. She is doing great and loving school.. No current issues with her health to update on except she did need platelets on Monday for the first time since Philly. Dr. Nick is pleased at how she is feeling and we fully expected some platelet transfusions and it is very good that she will not need Red blood or stimulating drugs for her white count.. They are doing just fine.

It is so cute how much she is enjoying school and everything I walk in with her the whole class says........HI EDEN!! Kids are so wonderful and adaptable.. Eden has made a few comments that she doesn't want to have to leave her school building next year because it is only for kindergarten and first grade and of course how would she get lovin from Miss. Diddle and Mrs. Zorn if she is in another building? I know this will sound odd but it was kinda refreshing to hear her worry about normal kid stuff... of course on the other hand it always sends a shock of panic through me when she talks about the future and forces me to think about it. I try very hard to live for the moment so I can keep it all together.

I saw Miss Diddle this morning and the hair is gone... She looks GREAT!! How lucky will the child be that receives a wig of her hair.

I hope you have all been enjoying the pics over the last few days!

I need to ask for a special prayer for the Thomas family. Christi has been doing poorly for the last week or so. They are trying very hard to control her pain as the disease progresses. Christi has been fighting Neuroblastoma for 4+ years.
http://christithomas.blogspot.com/

Hats For Heroes Celebrity Hockey Challenge Pictures

Compliments of Miss Diddle

Eden Adams - SuperStar!

Mrs. Zorn, Mrs. Russell, Mr. Roeth and I went to see Eden sing her little heart out at the Hats for Heros Hockey Challenge. Eden did a great job singing and obviously LOVES to be center stage (or, ice, as it were.) We were so glad to be there to cheer her on! Here are some pix that Miss Diddle took - we were kind of far away, but I did my best! p.s. It's hard letting her go to first grade everyday, but I know she's in good hands with Mrs. Russell - plus, she stops by for me to kiss her the top of her little bald head quite frequently!

p.s.s. check the blog again in the next couple of days - i'm donating my hair tonight to locks of love/wigs for kids and I'm hoping to get pictures posted :)

Vintage Grand Prix of Mid-Ohio

Eden with a new Acura TSX A-Spec!

4 yrs later...... August 2006

A Blast from the Past

I have wanted to post this photo for a long time now. This is Eden standing next to Uncle Chris' Z06.

June of 2002

Big First Grader

She is officially a first grader now and could not be more excited about it! Here are some pics of her this morning. The pic of her and Corley will be her Favorite I am sure!

Yesterday was the big day.. Eden sang the National anthem at Nationwide Arena for the Hats for Hero's game! I have to start by saying that she had probably never heard the song until last Tuesday when we started practicing and she listened to it 100 on her iPod to be ready for it.. Stefanie came into town on Friday so they could practice, practice, practice and that is what they did..... She and Stef walked out on that ice and made the entire arena cry.. She did such a wonderful job! She sang loud and clear! We need to thank Stef for working with her and going out and singing with her. We love you Stef! It was such a wonderful Event. We saw all of our friends from the Hospital and Eden's Past and Present Teachers were there aka #1, #2 biggest fans of Eden.... (Her new teacher Mrs. Russell is just getting to know her so we will give her a little time to catch up) You guys are the best and I don't know what we would do without you! And you all know that of course Eden's biggest Fan, Aunt CeCe was there with some of the great people from her office and uncle Bill brought Mick. Daddy and Shelly and Riley and Andy were all there to see Eden in her big debut. We feel so blessed every day for the wonderful people who surround us and support us. We will get some pics up of the event soon.

Thank you all and we love you!

Hats For Heroes Celebrity Hockey Challenge

Hats For Heroes Celebrity Hockey Challenge

Sunday, August 27 at 4 p.m. - Doors open at 3 p.m.

The 2006 Hats For Heroes Celebrity Hockey Challenge presented by Pepsi features a host of current and former Blue Jackets playing alongside other NHL stars and members of several local police and fire departments all in the name of charity. Proceeds benefit the Columbus Blue Jackets Foundation’s signature program, Hats For Heroes, which supports local pediatric cancer programs.
Players scheduled to play include Hats For Heroes founder Tyler Wright, current Blue Jackets Rick Nash, Adam Foote and Jody Shelley along with former Blue Jackets Luke Richardson, Geoff Sanderson and Kevin Dineen. Former Buckeye and NFL star Chris Spielman will serve as a celebrity coach.

Eden will be singing the National Anthem for this game and we would love to see you there! Please visit http://www.nationwidearena.com/schedule/event_info.php?id=751 to find out how you can get tickets.

The Good, the Bad and the Ugly

We went through every emotion yesterday... Starting with waking up early very grumpy!! (Eden is not a morning person) We made it up to the clinic and drew labs and saw the Dr and ran for the door to meet CeCe and go to the Wendy's Championship for Children women's luncheon. Eden was upset that I had dressed her in a VERY cute outfit but it wasn't a dress! so, CeCe agreed to run to the store on our way and find her a cute dress to wear. (she is not at all spoiled!) So we get there and Eden had a blast being the center of attention with all the ladies. She dragged poor Tasha around like her own personal barbie doll. (Tasha works for the children's foundation and kinda looks like a barbie) We cant thank Tasha enough for all she has done! We walked around the silent action for a bit and talked with all the people we knew from the hospital and the clinic called to give me Eden's counts. Now I figured she would need platelets by yesterday so I had planned on going right from the luncheon back to clinic for transfusion but to my surprise she was fine and in fact her white and Red count had gone up. Her platelets are still going down but slowly. Counts are: White 3.6, Red 12.4 and platelets 75 ANC 2088. I could not have been happier! We headed into the lunch and sat down and enjoyed the company at our table while eating and then they showed Eden's video. It was so wonderful and Bob did such an amazing job.. I cant wait to be able to share it with all of you. It will be playing on ESPN2 soon and I will let everyone know when as soon as I know. Over all the day was so wonderful and I hope they raise tons of money for Ped Cancer.....


Last night we went to Jaret's Service which was so very hard. Eden handled it wonderfully and many many people there knew who she was from the website. She and Riley made a stepping stone for Jaret's parents that was just perfect and they loved it. Wonderful idea Shelly! We didn't stay long because although Eden did great I just cant handle it! We headed home and did the bed and bath thing and started all over this morning.

Thanks and have a great day!

Getting through the days

Hey everyone,

I thought I should update today because tomorrow is going to be a bit crazy. Friday was a very hard day for everyone with the News of Jaret's passing and of course we had to tell Eden which so so hard to do.. She loved Jaret so much! She was learning American Sign language so she could communicate better with him. When he was not feeling well in the hospital about a month ago, Eden would take him little treats because she knew he wasn't feeling well. It was only about a month ago that we could expect to see him and Codey at clinic and the three would play together. It is days like Friday when I have an overwhelming urge to grab her up and run as far away as I can to protect her from this pain and hide from this monster forever! It is with regret that I say there is no running away. Eden as well as all the other children must stand and fight the beast and we as their loved ones can only stand by and pray that there will soon be a weapon to help them in this fight for their lives! Eden seemed to handle things ok and we talked about how Jaret could now hear and he was perfect in everyway forever now. She wondered if He and Ian (her friend she lost a few months ago) were playing Frisbee with Turner (her dog she lost a few years ago) and being watched over by Carrie (step grandmother she lost a year ago) How amazing is she?!

I thought she was ok until I started to pack for my weekend at Put-in-Bay with my sisters company and she started to get very upset so I let her call CeCe and the first thing out of her mouth was " you never take me on Vac with you, ever!" and the tears started. I think this was how she was choosing to express her sadness for Jaret but either way we decided to take her along and try to keep her mind off things and Uncle Bill and Aunt Pam showed up later with Mick so Eden had a great time. They had so much fun playing together and Sat we cruised around the entire island on a golf cart which she loved! She headed home on Sat with Bill and Pam and Mick and Daddy picked her up Sat evening. Today they are spending the day at the races which I am sure they will update you on tomorrow or Tuesday.

tomorrow we have to be at Clinic first thing in the morning for Counts. She may need platelets and if so we will probably have to head back up in the afternoon as we have to be in Dublin by 11 for the women's luncheon for Wendys championship for children kickoff. and then of course tomorrow evening is the viewing for Jaret. We are not sure if Eden will be going or not. We are letting her make the decision.

Thanks for checking on her and for all your prayers!

Angel Jaret

Jeret's mother's posting this morning..

Jaret passed away peacefully at about 1 am this morning with me, his dad, grandma and grandpa by his side. I will update when arrangements have been made.

Sweet dreams little guy! We miss you already. http://www.caringbridge.org/oh/jaret/



Eden has lost a few friends over the past few years and it never gets easier and it never makes sense to us why these sweet babies have to go! We MUST find a cure for this Monster!

Another Jaret update, just in...

Email from Tina:
Shelly,
Jaret is still in the PICU on the respirator so bringing him home isn't possible. We have so far made the decision not to elevate care meaning they will continue with the support he already has but not add anything new. That was a big step for us. I hope Eden is doing well.

Tina

An addition to this morning's update

Here is the update that Jaret’s mom, Tina, added to his Caringbridge page on Wednesday:
Wednesday, August 16, 2006 8:04 AM CDT
We've had to come to the reality that Jaret is not getting better and there is just too much going on in his body for him to overcome. His little body is tired and can't fight anymore. The doctors have promised to make sure he is in no pain. He has been sedated for two weeks so we're not sure how much if anything he can feel now.I want to thank everyone for all of the messages of support. It means everything to us and I know that you will all be there for us when we will need it even more. Please keep Jaret in your prayers and hope that he can go peacefully and painlessly. A special prayer for his big brother would be welcomed as well. Jacob is nine and he doesn't understand. He tells me Jaret will come home. He believes doctors can do anything - if only that were true.
Tina

Please keep Jaret and his family in your prayers.

Clinic today

Eden had clinic today and things are still fine.. Each time we see her counts go down which we expect to see but as of yet we have not had to transfuse. Counts are: White 2.2, Red 11.8,Platelets 146 and ANC 1584. It is possible she will need a platelet transfusion by next week as they continue to drop but we will just wait and see.

We have not heard anymore from the Cerino family but I assume nothing has changed and I don't know when they plan to move forward. Please Continue to pray for a fast and painless journey for Jaret and the family in their time of need. We love you and will miss you very much Jaret!

Thanks

Lisa

Please PRAY!

Eden's Very good Friend Jaret is doing worse. Based on the update I just read from this morning I assume they are considering removing him from the respirator.

It is so unfair and very hard to keep my faith in God during times like this. How can the God I know to be kind and forgiving and loving rip this sweet innocent child from his family like this?

I know he has his reasons but it will take some very serious soul searching to make peace with this.

Please keep Jaret's family in your prayers as they go down this road that no parent should ever have to see.

Thanks

More State Fair 2006 Pictures

State Fair 2006 (Saving Jane)

Saving Jane put on an amazing show Saturday night! We all had a blast. Rourke, Eden and I had a little trouble focusing on the show though, we kept getting distracted by watching the ASL interpreter. She was amazing to watch. ASL is a beautiful, expressive language and Eden tried her best to follow along, she knew some of the signs and got very excited to share with us what she knew. She even approached the ineterpreter after the show to say "Thank You" and was rewarded with a wonderful compliment on her stick-on headband.

She got to meet Joe, the keyboard player after the show and had her picture taken with him. He even gave Eden a rose and me permission to use his picture on Eden's site.

State Fair 2006

Here are some oif the pictures from the fair on Saturday. I'll post more later. Enjoy!

Great Weekend

Hey everyone. Eden had a great weekend. Sat we headed to the pool to spend the day and Stef came in town so Eden was very happy to see her. Then she and Riley went with Dad to the fair to see Saving Jane. She had a fabulous time hanging out there and riding a few rides. After they left we met up to get Eden back so she could go to church Sunday morning with her friends Allie and Lil and Abby and Madeline. Thanks Amy for bringing her home. I was not able to attend as my Dad was in the Hospital and CeCe and I needed to go check on him. (He is fine and home now) After church we headed back to the pool (its our fav weekend hangout spot) at about 3 the kids had to get dressed to hook up with Dad and head to Chris wedding up in New Albany and they had tons of fun and came home very tired. Congratulations Chris and Rachel !!

This morning we were up early and headed to Clinic. We had a lot to cover with Dr. Nick today. (FYI-we missed not having Justin around to tease and have fun with... WE MISS YOU!) Eden's counts are still fine and I am not completely sure when we will start to see them drop from MiBG therapy. Dr. Nick seemed content with how well she was feeling and how well she handled the treatment and basically we will just watch her counts twice a week and transfuse when needed and hope they recover without a rescue. He and Dr. Mosse are in agreement that the spots they saw on this last MIPS from Philly in her skull have been there and it just took extreme amounts of MiBG to be able to see them. We talked about having her do her 6 week scans in Philly so we are comparing Apples to Apples but when he spoke with Pat B in Philly she said they like to have the scans done on the same equipment it has always been done. I am not sure I understand how we will get accurate reading if we know its there but know it wont show up on the scans in Columbus.. How do we know if it worked or not?? For now I will back off and see what happens but good or bad I want accurate results in 6 weeks and I will make that known when the time comes.

It should be a quite week and if anything comes about I will keep you updated.

Have a great week and enjoy life!

Home Sweet Home

Hi Everyone. We are all glad to be back home and I want to thank everyone who was praying for Eden to get through the MiBG Treatment fast and easy... It all went exactly as planned and by Thursday her levels were down to a safe enough level for her to leave the hospital. (needed to be 7 to leave and they were 4.2) and let me tell you when they are done they ARE DONE.. They dragged us down for the scan and kicked us out.. So we were no longer allowed to stay at the hospital and in fact we were told that once she left the room we needed to walk directly out of the hospital ....Do not pass go do not collect 200.00. This is because although her levels are safe for her to be in public it is still not healthy for sick children to be exposed to Radiation that Eden is still giving off. We were also not allowed to stay at the Ronald McDonald house because there are sick children there, so they helped us get a room at a hotel for the night until Uncle Jack could come pick us up today. We showed up at Atlantic Aviation this morning around 9AM to wait for him to get in and the girls there were SO SO wonderful to Eden. They grabbed her up before we even unloaded the Taxi and were off spoiling her. THANK YOU LADIES... That really made her day! We had to wait 45 min on the runway to get going because they were so busy but we could never be upset or complain as we are so so lucky to have the amazing Capt. Jack running us back and forth in his private plane. The flight was wonderful as always and it was such a beautiful day for flying.

CeCe was having a Company swim party so we stopped for much needed play time and just got in the door... Eden has to take one of the liquid meds every 6 hours and the other every 4 hours for a few more days and then one once a day for 5 weeks to protect her thyroid from the Radiation and we must do labs twice a week and of course transfusions whenever necessary and we wait for 6 weeks for them to rescan her to see if the treatment helped. Please pray that it does!! We were told that Eden would be having a scan before she left the hospital and that we may see more disease on this scan because of the large amount of MiBG in her body from the treatment. They gave us a call and said that of course we see the spot on her shoulder and the spot in her belly and a spot we haven't been able to see before at the base of her skull. All of these spots have been there but we just haven't been able to see them.. so we are trying hard not to freak out.. I will talk with Dr. Nick on Monday and try to understand this better to explain it better.

For now she is feeling great and loving life and thank you all for your love and support!

We are here and all is well. Our flight in yesterday morning was great thanks to Capt. Jack. Rourke got checked into the Ronald McDonald House then and we headed over to CHOP. Rourke stayed at the Ronald McDonald House the first night because he ended up getting called into work the night before we left, because there was problem at Honda that required his attention to get them through the week. We hit Clinic first and Eden was very upset when she found out they use a different kind of needle to Access then we do in Columbus and she stated that next time she would be bringing her own needles! (We never have to worry about Eden standing up for herself) Rourke however ask if we could try a ½” needle and it was to short. I order to make the draw; the nurse had to press against her port to make it work. So, because it had already been accessed there was a hole and Eden said that it would be ok to change it out. We made it into the main hospital and into her room about 6ish and Rourke was short lived and headed back to the Ronald McDonald House by 7:00 and he ended up walking just to gauge how long it would take in case of an emergency, he missed the bus figured that we needed to know what it would take to get back and forth on foot.
It was almost 45 min after he got lost and he was asleep just after 8:00pm.

Eden wanted to explore the floor and check things out so we did that and she ate for the 10th time that day and played with some other children in the playroom. About 9pm she was DONE. The night went fine expect she had to wake up for some oral liquid meds that she was not happy about. Eden would rather take 30 pills then one ounce of liquid and unfortunately she will have to take this liquid medicine every 6 hours (Day and Night) while we are here and once a day for about 30 days after we leave. It is two different forms of potassium designed to protect her thyroid from the MiBG. We were woke up this morning at 7am by someone from Surgery saying they were ready for her upstairs to put her Catheter in. Not the best way to wake up but at least it was done early so she didn’t have to wait long to be able to eat.. All of her Doctors and Nurses are talking about her ability to Advocate for herself as she did once they took her back in Surgery. She made it clear she wanted no IV and no oxygen mask near her face. She told them when and how they could do what and they were very accommodating. After that she just kind of laid around in her bed and we cuddled with her as much as possible while we could. The infusion started around 1pm and took about 120 min.

Eden’s Radiation level was 22 initial after the infusion and has to be 7 to be released. This level will be continued to be monitored.

As of Wed evening she is feeling well and eating well but sleeping a lot do to meds to keep her calm.

Thanks for checking in on her and please look below for pictures updated from the trip so far.

Eden MIBG Pictures 6~9

Eden MIBG Pictures 1~5

A plea for prayer for Jaret

Eden's friend, Jaret Cerino, is not doing well at this point. His website is: www.caringbridge.org/oh/jaret

Please offer up prayer for him as often as you can. Please ask all of your friends and family to do the same. Please add him to any prayer lists and prayer chains with which you are affiliated. Please remember to include his parents, family and the medical professionals taking care of Jaret in your prayers. Jaret needs a miracle, let's ask for that to happen.

When I last heard from his mom she mentioned that the antibiotics were really messing up the kidney function and that his disease may be progressing. There aren't many treatment options for a fighter with kidney problems, so they are trying to decide what will be the best course of action for Jaret. Please hold them up in prayer while they navigate this road.

MIBG rules from CHOP

Radiation Safety Information for Parents of Children Treated with 131I-MIBG at Children’s Hospital of Philadelphia (CHOP)

This information is designed for parents (or family members) providing care for their
children undergoing treatment of neuroblastoma with 131I-MIBG.
This information must be viewed by each parent (or family member) that will provide care during the treatment. Federal requirements stipulate that only parents or family members may provide care during the treatment.

Terms
radiation – In this case, it is a shortened term for “ionizing radiation” and is used to describe the wave or particle emitted or “given off” by a substance. 131I is the part of 131I-MIBG that emits radiation. 131I emits both gamma (wave) and beta radiation (particle). The radiation emitted or given off by 131I-MIBG is known as ionizing radiation. Ionizing radiation is tasteless, colorless, and odorless. 131I-MIBG emits two types of ionizing radiation - gamma radiation and beta radiation. For more information on ionizing radiation, see http://hps.org/publicinformation/radfactsheets/
gamma radiation – A type of ionizing radiation in the form of a wave. Gamma radiation is capable of traveling long distances through air and most other materials. The gamma radiation is useful for imaging studies that will be performed in the Nuclear Medicine department at the end of the treatment.
beta radiation – A type of ionizing radiation in the form of a particle. Beta radiation can
travel only short distances. For example, beta radiation from iodine can only travel about ½ inch through body tissue. The beta radiation is what is actually providing the therapeutic part of the treatment.
radioactive – A term used to describe a substance that emits or “gives off” radiation. 131I is radioactive.
radioisotope – A radioactive substance. In this case, 131I is the radioisotope.
half-life – As radioisotopes emit radiation, they “decay” or become weaker. The half-life is the amount of time it takes for a radioisotope to decay thereby emitting only half as much radiation. The half-life of 131I is 8 days. Other radioisotopes have half-lives that range from seconds to many years.
mrem (millirem) – A unit of radiation dose. Most radiation meters and dosimeters are used to measure the radiation dose in units of mrem. 1 mrem = 10 µSv.
µSv (microSievert) – A unit of radiation dose. Some dosimeters use this unit of measurement. 10 µSv = 1 mrem.
dosimeter – a small device worn near the collar that is used to measure the radiation dose in a manner similar to an odometer in a car.
radiation meter – An electronic device used to detect the presence of radiation and measure radiation levels.
contamination – The presence of a radioisotope (131I) in an undesired area. For example, on the soles of shoes or in the hallway outside the room. Contamination, in this case, is
essentially the presence of 131I anywhere but in your child’s body or in the toilet (where the urine is disposed of).
lead shield – Used to stop gamma radiation. Since lead shields are very thick and lead is a very dense material, it stops or “absorbs” almost all of the gamma radiation from 131I.

What is 131I-MIBG?
Metaiodobenzylguanidine (MIBG) is a substance that concentrates in neuroblastoma tumors. A type of radioactive iodine (131I ) is chemically attached to the MIBG forming 131I-MIBG. 131I-MIBG is a clear liquid that looks like water.
Where does 131I-MIBG come from?
131I-MIBG for this treatment is produced at the University of Michigan. The University
of Michigan ships the frozen 131I-MIBG to CHOP within approximately 24 hours of the
treatment.
How is the 131I-MIBG administered?
After the frozen 131I-MIBG is thawed, it is placed in a large (60 cc) syringe. A cart will be brought into the room shortly before the 131I-MIBG treatment begins. An infusion pump will be located on the cart and will be surrounded by lead bricks covered with drapes. The syringe is placed in an infusion pump. The pump slowly pushes the plunger of the syringe. It typically takes about 90 minutes for the administration and another 20
minutes to flush the line with saline. An injection port (e.g., IV port) already established in your child will be used for administration.
What will happen to the 131I-MIBG after it is administered?
The 131I-MIBG will enter into your child’s bloodstream during the administration process and a portion of it should then go to the neuroblastoma lesion(s). Most of the remaining 131IMIBG will be eliminated through the urine over the next several days while your child is in the hospital. The 131I-MIBG will also be in other bodily fluids such as saliva and even the oils secreted by the skin. A small amount 131I-MIBG will remain in your child even after he or she leaves the hospital.
Why must my child stay in the hospital?
Federal regulations require patients receiving designated quantities of radioisotopes to stay in the hospital until a specified amount of the radioisotope has been eliminated. The regulations also stipulate restrictions on these patients while they are in the hospital.
Typical diagnostic nuclear medicine procedures do not require a stay in the hospital or any other restrictions because they involve much lower amounts of radioisotopes. Once your child is released from the hospital, there are no regulatory restrictions that apply.
How will the room be prepared?
The room used for 131I-MIBG treatments will be a typical hospital room with the addition of ¼ inch of lead in the walls and door. There will be three large mobile lead shields that will surround the bed. There will be a lead box at the foot of the bed that will shield urine bag (if one is used).
Most surfaces of the room (floors, bedrails, etc) will be covered with plastic. Equipment, such as the telephone, that your child may touch will also be covered with plastic. There will be several large cardboard boxes lined with red bags.
Basic instructions
•Keep the following items in the room for monitoring by Radiation Safety staff:
1) Food items
2) Catheters
3) Bedding
4) Trash
5) Patient dressings
•Nurses caring for this patient must be properly trained by the Radiation Safety staff.
•Pregnant nurses should not care for this patient.
•No visitors under 18 years or pregnant.
•No housekeeping or dietary personnel should enter the room.
•Use disposable table service for patient.
•All staff entering room must wear a personnel dosimeter.
•Visitors, other than parents, should not stay more than 60 minutes per day.
•Wear disposable gloves and paper gown when caring for patient.
•Wear shoe covers when entering room.
Why is a Foley catheter used during the treatment?
To reduce the radiation exposure to your child’s body and especially to his/her bladder, a Foley catheter system is used to directly eliminate urine. Older children may not be required to have a Foley catheter system. This decision will be made by the medical staff. The Foley catheter is connected to a plastic collection container.
How is the urine handled?
Because the urine will contain 131I, the urine container needs to be stored in a lead box until it is emptied. The urine is collected in a plastic container that is connected to the Foley catheter. The bag is kept in the lead box until it is periodically emptied into the toilet by a member of the nursing staff.
What items can I bring into the room?
You can bring your luggage and belongings into the room. However, these items will need to be stored away from the bed such as behind the chair that you will be sitting and sleeping on. The concern is to keep these items from becoming contaminated during the treatment.
Contamination can only occur by the transfer of body fluids from your child.
What about items that are special to my child?
You should plan to leave anything at home that you do not want to end up in the trash. Any item that your child handles, including clothing worn, will most likely become contaminated with 131I and will be treated as radioactive. These items can not be returned to you.
It is recommended that you bring disposable toys, etc. for your child to play with during the treatment.
What may I do during the treatment?
You may care for your child and assist them with taking medications, going to the bathroom, eating and other necessary activities. Most of your time should be spent in the designated chair. This chair also extends so that it may be used for a bed.
What may my child do during the treatment?
Your child may play video games, watch TV or play with toys, etc. However, you will need to change the TV channels or put movies in the DVD player for your child. A video game controller will be wrapped in plastic so that your child may use it to play video games that are available in the room.
What restrictions will my child have to follow during the treatment?
Your child will have to remain in bed most of the time during the treatment. Exceptions
include using the toilet, going to the Nuclear Medicine department for a scan and, in cases of medical necessity, being moved to another area of the hospital such as the Intensive Care Unit (ICU).
You will be allowed unlimited time in the room during the treatment.

However, the following will apply to you while in the room:
􀂾No eating or drinking;
􀂾Wear appropriate protective clothing (discussed below);
􀂾Follow other radiation safety precautions (discussed below);
􀂾Wear a dosimeter (discussed below);
􀂾Do not use the toilet or shower in the room;
􀂾Only one parent is allowed in the room at a time (except for brief periods of time for
transition).
What precautions will I have to take when entering the room?
Once the treatment has started, you will need to take some precautions. Before entering the room everyone must put on, at a minimum, disposable booties (shoe covers) and an electronic dosimeter. If you will assist your child or will handle anything your child has touched, you will also need to put on a disposable gown and gloves.
If you are sitting in the chair, you do not need to keep your gloves and gown on. However, it is a good idea to keep them next to the chair in case you need to quickly assist your child. Protective clothing will be available in the yellow cart in the hallway across from the room.
What will I have to do when leaving the room?
When leaving the room, booties are removed first. If you aren’t wearing gloves, remove
the booties without touching the outside of the bootie. Booties are placed in the trash boxes by the doorway. As each bootie is removed, place the uncovered foot on the hallway floor. Do not step or walk on the plastic without booties.
After booties have been removed, remove the gown and then finally, the gloves. Place
them in the waste boxes at the doorway.
Checking Hands
A radiation monitor is available on the yellow cart in the hallway to check your hands for contamination. It is probable that any bodily contamination that occurs will involve the palms of the hands. However, it is very unlikely that hand contamination would occur if you follow the precautions outlined.
Why do I have to follow the radiation precautions?
By following the precautions outlined, you will not only minimize your radiation dose, but you will minimize the radiation dose to others (e.g., by not spreading contamination). Also, by not following the recommended precautions (which are stipulated by federal regulations) our permission to perform these treatments may be jeopardized.
Will I be exposed to radiation?
You will be exposed to radiation during the treatment. However, we will help keep your
exposure as low as possible. How well you follow the recommended precautions will greatly
affect the radiation dose you receive.
What ways can I be exposed to radiation?
Exposure to radiation can be divided into the following two basic categories:
􀂾External radiation exposure
􀂾Internal radiation exposure
External Radiation Exposure
You will be exposed to gamma radiation being emitted from the 131I that is in your child. The gamma radiation is emitted from your child in all directions similar to a light
bulb giving off light. The closer you are to your child, the higher level of gamma
radiation. Another source of gamma radiation exposure is the urine. This is why it is stored in a lead box during collection.
Internal Radiation Exposure
This type of exposure mainly results from 131I hand contamination. Any contamination
on the hands can be transferred to food items which, in turn, can transfer the contamination (131I) inside your body. Once the 131I is in your body, exposure from the beta and gamma radiation occurs. Because of the precautions taken during treatments, this type of exposure is highly unlikely.
How can I prevent or reduce my exposure to radiation?
The extent of your radiation dose during the treatment will be determined by how well you follow guidelines listed in the next few paragraphs.
External Radiation Exposure
External radiation exposure can be minimized in the following ways:
􀂾 Minimize the time you spend near your child
􀂾 Maximize your distance from your child as much as possible (the radiation level falls off rapidly with distance)
􀂾 Stay behind the mobile lead shields as much as possible (during the treatment, the
mobile shield at the bedside should be positioned so that you can only see your child’s
head when you are sitting in the chair)
Internal Radiation Exposure
Internal radiation exposure can be prevented in the following ways:
􀂾 Wear gloves when touching your child or anything that your child has touched
􀂾 Do not eat or drink while in the room
􀂾 Wash your hands after leaving the room
􀂾 Check your hands with the hand monitor after leaving the room
How much radiation exposure will I receive?
Typically, parents receive between 100 and 300 mrem (1000 and 3000 µSv) during a
treatment. The federal government limits parents (or family members that are providing care) to 2000 mrem (20,000 µSv) per year. The occupational limit for nurses, doctors and other medical staff is 5000 mrem (50,000 µSv) per year.
For comparison, the typical person living in the United States receives a radiation dose of
about 360 mrem (3,600 µSv) per year. A breakdown of the sources and amounts of this
radiation dose is shown below.
Sources
cosmic =8% Medical =15%
internal = 11% (K-40, C-14, H-3, Be-7, Na-22)
nuclear weapon testing =0.3%
terrestrial =8% nuclear power =0.1%
Radon =55% consumer products =3%
air travel =0.6%
source: NCRP 93
How will I know how much radiation exposure I have received?
You will be provided with an electronic dosimeter. This is a device that measures
cumulative radiation dose similar to how an odometer measures mileage in a car.
The electronic dosimeter reads out in units of microsievert (µSv). A µSv is a unit of
radiation dose as is the mrem (10 µSv = 1 mrem).
How is radioactive waste handled?
All the waste collected in the boxes during the treatment is probably contaminated and,
therefore, must be treated as radioactive waste. This waste is collected daily and taken to a specialized waste storage facility and held for approximately 3 months. At this time, the 131I will be gone and the waste can then be disposed of as normal medical waste.
What about pregnancy?
If you are pregnant, you will not be allowed in the room at all during the treatment.
What about other visitors beside parents?
Visitors, other than parents or family members who are participating in the treatment, are
limited to 60 minutes a day and must remain behind the mobile lead shields and wear the
appropriate protective clothing. No individuals who are pregnant or under 18 years old are allowed in the room at any time.
How will emergencies be handled?
Your child will receive the same level of care as any patient would receive in an emergency situation. If your child needs to be moved to the Intensive Care Unit, radiation safety precautions will need to be followed and the mobile lead shields may also be used. Radiation Safety, Nuclear Medicine and other medical staff are available 24 hours a day for assistance.
When will my child be eligible for release from CHOP?
Federal regulations require patients treated therapeutically with 131I to remain in the hospital until the radiation level at 1 meter (about 3 feet) is below a specified level. Radiation Safety staff will check the radiation level at least daily and will notify the nursing staff when it is below the specified level. Your child will have a measurable radiation level when he/she leaves the hospital. However, it is at a level that is not thought to be unsafe for others around them.
What precautions should I take after leaving the hospital?
Regulatory restrictions on your child only apply while your child is in the hospital. Once your child leaves the hospital, the restrictions will no longer apply. However, you will be given verbal and written recommendations before the treatment. The purpose of these recommendations is to minimize radiation exposure to others especially small children. The recommendations list precautions to be followed for 5 days and a list to be followed for 7 days. The first day in both of these time periods is the day the MIBG is administered. In other words, if a treatment begins on a Tuesday then all recommended precautions would end by the following Tuesday (i.e., 7 days later).
You will also be given a pamphlet produced by the Society of Nuclear Medicine which gives additional information about the use of 131I for medical treatments.
Written Recommendations
These guidelines should be followed for 5 days.
Minimize the time you spend in close contact with other individuals at home or work (no closer than 3 feet for more than 1 hour per day).
Use good hygiene habits, bathe daily and wash your hands frequently, especially after urinating.
Flush the toilet twice after each use (males should sit for urinating to avoid splashing).
Do not handle or prepare any food which might be consumed by another person.
Use separate eating utensils and do not share personal items such as combs, toothbrushes, etc
Use separate towels and washcloths. Launder all of your bath towels, bed linens, and clothing separately after 5 days.
Sleep alone.
Written Recommendations
These guidelines should be followed for 7 days.
Avoid kissing or intimate contact with another person.
Minimize close contact with pregnant women and young children.
If you are in need of any medical care, the medical personnel should be informed about these instructions.

She's back for about three seconds

Eden arrived safe and sound this afternoon from camp. She said she had a good time, but I didn't get any details before her mom whisked her off to Grove City. She'll spend the night here and then I'll roll her and her dad out bright and early to drive them to the airport to say goodbye.

They're due to leave around 8:30 AM, so I'll get her just in time to put her to bed and then see her off.

I'm SO not happy about being separated from her during treatment. She and I have a very good rapport for the tough stuff, the boring stuff and the fun stuff. Since she and I do almost all of the mundane, day-to-day treament stuff together we both know that we can count on the other for strength, encouragement and laughs. I hope she doesn't resent me for not being with her. I have no choice in the matter. I can only hope that one day she will understand why and still love me for being powerless in these choices.

Thanks to the Richey's for the Hee Haw DVD's! Eden will love having them to watch and listen to this week. She says that the music on the show makes her SOOOOOOOOOOOO happy. I found a maze book for her to take along, she's really been enjoying the maze craze. This one is all castles, so she can pretend to be a lost princess.

She has crayons, coloring books, surprise ink books, card games and much more that she is planning to take along. All of these things are ok to throw away to her, as we have talked about it more then once in the last few weeks. She's excited, but a little wary of the new stuff, place and people. She's a trooper and I know she'll have them all "EDENIZED" before she leaves Philly.

Off she goes...

The Princess has left the nest! Check out this photo of Eden and her friend, Robin, as they prepare to ride toward the horizon this morning. Our baby is growing up too fast!

Eden and a large group of children and teens left Children's Hospital this morning for a weekend of fun, frolicking and food at Camp Cotubic in Bellefountaine. Hem/Onc Camp 2006 has officially begun.

Suffice it to say that Eden ran, not walked, to get on the bus. She had not even one second thought about leaving her family to join her "other family" for a weekend. Thanks in advance for all of the volunteers, nurses, PCAs, doctors, family members and anyone else involved!

This year's camp theme is "Hawaii", so Aloha for now.

By the way, parents are NOT allowed to go to camp, so any pictures that I publish will be courtesy of the folks that are at the camp. So if I don't have pictures to publish, you will need to complain to the J5 staff! (I'm still getting photos from last years camp, so I'm sure that someone will come through for us!)

ups and downs

We have had our ups and downs this week but all turned out well. Of course we have been waiting all week for Eden's Bone Marrow test to come back and finally yesterday Dr. Yeager called to say it was all clear..... (how can we ever thank you all for your prayers!!) This is of course very good for many reasons.. No disease in the marrow means less Radiation that will stay in her body during the MiBG therapy and then just the obvious reason that less disease is better.

On Wed Eden went to get her new molds for her hearing aids and while Melissa was testing them she found that something was wrong with Eden's right ear. Its very hard to explain the problem but basically something was keeping her eardrum from moving the way it should to send sound waves thru the ear. Melissa was concerned that she had fluid in the inner ear just behind the eardrum and although her ear Physically looked fine and no infection could be seen, Eden is very prone to ear infections and any kind of infection is very bad for Eden. So, we went straight to the hospital and they couldn't do anything because it was so late so first thing Thursday morning we headed to Clinic and Dr. Nick looked and couldn't see anything but again there was a concern infection was brewing so a CT scan of her head was ordered. While there we ran into Justin who is one of Eden's favorite people in the world and we are trying to get as much time in with him as possible because he is packing up and heading the St. Jude's. We will miss you so much Justin!!! Sorry back to the story. Anyway, we had a few hours to kill before the CT so we ran home and dropped Riley off and went back to meet with Shelly. ( Mommy has to work a few hours in the day around Eden's schedule) so back up to Clinic to get accessed where we met Shelly and Justin again. They all headed down for CT while I headed back to work. After the CT shelly took Eden over to CeCe's for a little swim time and I went over after working. Around 7 pm Dr. Nick called to say the CT looked completely normal (that is also when he told me the marrow was clear) so then of course we were back at square one with what was wrong with her ear. This morning we headed back up to the hospital for another Audiology test and this one came out fine so what ever the problem was it resolved itself. This is the down side to knowing every little thing going on in her body that sometimes we know to much and don't give her body a chance to correct itself.

In the end all is well and Eden is off to Camp in the morning. She will be back on Sunday and Monday morning we leave for Philly. Need to say a big thanks to Tom and Robin for above and beyond kindness. Robin asked what she could get Eden to help fight off bordom while in Philly and i mentioned eden New found love for the show Hee Haw and low and behold i recived an email that she found the DVD on the internet and it will be delivered tomorrow..... How funny is that?

Thanks for checking in on the princess and stay tuned for upcoming events!