Monday, July 31, 2006
hyho hyho its off to philly we go
We officially have the green light for Philly as of today. Eden went in for her Bone Marrow aspiration this morning and before that she had to have labs and meet with Dr. Nick. During the conversation between myself, Nick and Shelly we talked about her MiBG scan from last week. We didn’t update the Blog on this because things were still up in the air but it was a rough week of waiting and wondering. As soon as her scan is done the techs send it over to a Dr. to look and decide whether or not to do a more in-depth scan called a 3D image and we have always known that them wanting the 3D image is never a good thing because it means they are seeing something they need a better look at. So we waited all day Wed and never heard anything and Thursday morning they wanted Eden to come back in for a rescan of her chest/abdomen area. They were having a hard time seeing anything because her bowels were very full... (She was full of S**t) so by Thursday night Robin called and said they could see something in her Chest/Abdomen area but needed to let Nick discuss it with the Radiologist before anything could be determined. Rourke Spoke with Nick on Friday but we still didn’t know what it all meant to us until today when we talked with Nick and then Dr. Mosse from Philly. Here is what we were told. They can see something but they are not sure it is Cancer and if it is they are not worried about it. They can see one dot basically barely lighting up and it would be very odd that it would be a new spot considering the other areas look so much better. In fact the nodes in her pelvic area are gone and the one in her shoulder is very light and very small.
After speaking with Dr. Nick I received a call from Dr. Mosse and she indicated that Eden is a perfect candidate for MiBG because of the small amount of Disease they are seeing and because she is in such good health right now. So Philly here we come. We will be leaving on Monday the 7th and she will have clinic visit at CHOP and then we will head over to have her admitted and they will start fluids and probably put her catheter in. (She must have this in the entire time she is there to protect her bladder from Radiation) Tuesday morning she will get the injection containing MiBG tracer and Liquid Radiation. Then we wait it out. That is all there is to it and she will be in no pain and there are no side effects except it will drop her counts. The biggest problem they find with this procedure is boredom. Eden will not be allowed to leave her lead lined bed and we will not be allowed to touch her and she can’t touch us.
We will wear a device around our necks to monitor the radioactivity around our bodies and we much keep a chart of those #’s. If we need to touch her or help her with something it is with gloved hands only over the lead lined walls surrounding her bed. She will have to wear hospital gowns that will be thrown away after use and anything she touches must be disposed of using special measures. I am sure by the first day we will be used to all the new rules however I am not sure how I can be in the same room with her and not kiss her. The thought if it breaks my heart as I know I kiss her shiny little head and her sweet little face 500 times a day. .
It is our hope that by Friday we will be on our way home. We need to say a big fat Thank you to Capt. Jack for flying us out and coming back to get us. Aunt Linda and Uncle Jack are two of the most amazing, giving people I have ever met and we will forever be in their debt for the kindness they have shown in our hour of need!
Sunday, July 30, 2006
The AMAZING and probably sleeping NIKKI has finished her marathon of blogging. Her efforts raised $1095 for the CNCF!
Yipee! WOO HOO! Thank you Nikki for making our cause, your cause. You are a wonderful young lady and our hearts go out to you while you rest.
Here is a quote from her blog:
**Together, we raised $1095 for CNCF! I can’t thank you all enough!! More good news: You can STILL Sponsor Me! for 48 hours AFTER the Blogathon is over! Send this link to your friends, neighbors, garbage man, etc! We can still raise more for CNCF in honor of our Warriors! (Notice how I'm taking ownership of them now!)**
So, click the link above and show Nikki your thanks by supporting her blogathon efforts. Do it for Eden and all of the others fighting neuroblastoma.
Saturday, July 29, 2006
Blogging for a Cure 2006
QUICK, head on over to http://bloggingforchristi.blogspot.com/ right now.
Nikki is blogging for 24 hours straight to help raise money for the Children's Neuroblastoma Cancer Foundation! Every 30 minutes she adds a new entry to her blog to help raise awareness to the little known disease of neuroblastoma.
Eden will be featured at 4 PM, so make sure to head on over and leave lots of encouraging comments for Nikki and make a donation, if you can!
Check out the CNCF website, it's full of awesome information and lots more, too.
Monday, July 24, 2006
Hi Everyone. Eden is feeling wonderful and thank you for checking on her. I wanted to make sure we share this information with you as it is SO important. Sweet Sweet Nikki will be blogging for 24 hours on July 29th to raise money for the Children's Neuroblastoma Cancer Foundation. She will be featuring a new child every hour and staying up for 24 hours to achieve this. Thanks you so much Nikki!!
I also wanted to share this with you. Another NB mother sent this to me and I wanted to honor ALL parents who have children with Cancer: Mothers and Fathers and Step-Parents.
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard." Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother.
You see, the child I'm going to give her has its own world. She has to make it live in her world and that's not going to be easy." "But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary.
I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."
Friday, July 21, 2006
A long day
Eden did not want to get out of bed today. She was very whiny and every little thing hurt and made her cry. She had breakfast and took her meds and we headed for the clinic. I had hoped that she would sleep in the car, but she stayed awake.
She was very clingy and tired while in the clinic, but not as whiny. She mostly just laid in my lap watching people come and go. She decided that she wanted her port accessed instead of a finger poke. She told me that her finger hurts for a long time after a finger poke and if we weren't in a really big hurry that she would really like to not get her finger poked. She seemed to perk up a little after I assured it that she could be in charge of deciding which way to give her blood.
She did her vitals and then we headed in to be accessed and to have blood drawn. After she got all done, we had an hour to wait for results. Guess what Eden wanted to do? Yep, you guessed it: she wanted to eat breakfast again. So we headed down to Food 4 Thought and had more food.
Back to clinic to learn that her platelets were low. 19,000 is a cruddy number to hear. She settled in to wait for the platelets to arrive by making a craft with Mary, a super nice volunteer. The stuff arrived and we discovered that her port wasn't working properly, so Stephanie had to really worked to get those platelets in her. After a while the platelets were in and we left.
Eden waited patiently in the PICU waiting room, while I quickly ran in to visit with Jaret Cerino's dad, Guy. I wanted to check in on our little buddy who is having such a rough week. She felt so funky that she just didn't seem to care. The receptionist kept an eye on Eden for me.
Jaret just recently had the same treatment that Eden will be going to Philly to have next month. He became platelet dependant and had to have MANY transfusions of platelets and red blood in the last two months. He got his stem cells back on the day that Eden finished her recent stem cell harvest. He had some issues over the weekend and had to be brought in for treatment. Check out his website for more details: the links is in the Links area in the upper right hand corner of this page.
Let me tell you that it is a terrifying thing to see that sweet, wonderful little boy under sedation, hooked up to a respirator and obviously very uncomfortable. They had to restrain his little hands and he just kind of flopped his arms and one leg around. I cannot imagine what he parents feel right now. PLEASE pray for Jaret to bounce back from this quickly and for strength for Guy and Tina as they support him through yet another difficult time in his treatment. My heart breaks to see him so down. I wish there was something that I could do, but I cannot imagine what it might be.
We have been so blessed and lucky through all of Eden's treatments and I think we take for granted how very lucky we have been. She is such a trooper and so strong and her body has taken so much abuse that I just cannot believe that she hasn't started falling apart!
Please, please pray for Eden to have a great MIBG experience, Pray for Jaret to have a quick resolution and pray for all of the parents who should never have to see their children through this cancer hell.
P. S. We didn't go to the zoo today as I had planned. Eden felt pretty bad all afternoon and took a three hour nap. She was back into bed around 10 PM tonight. The poor thing is not doing as well as we have seen in the past, but I guess it's just all catching up to her.
Thursday, July 20, 2006
For Eden's loyal subjects
Wednesday, July 19, 2006
She's REALLY six
There is no longer any question: Eden is six, for real. She went to see her dentist today for a full-on check-up complete with x-rays of her teeth. Guess what we all got to see? Eden is growing her twelve year old molars already, her six year old molars are beginning to emerge and those pesky little baby teeth are wiggling like crazy. She is right on track, dentally speaking, for a six year old.
The x-rays showed that she has not got second pre-molars at all. Dr Haid said that this is not unusual and she is sure that it is not cancer treatment related. Dr Haid said that these teeth would have been growing long before Eden started any kind of treatment. Go figure, Eden is normal, well, except for having cancer.
Last night she soaked in the bathtub and I hung out with her for a while. We talked for a while about the catheter that she'll have to have inserted in her "pee-pee" while she is Philly for treatment. How exactly to you explain radioactive urine to a six year old?
Then our chat turned to loose baby teeth. She didn't realize that baby teeth that are loose are DESIGNED to fall out. She thought that she might swallow it, WHO would tell a child not to wiggle a loose tooth or they might choke on it? What a loser! I showed her how to hold her tongue up so that when she wiggled her loose tooth the tongue would block it from going down her throat. She wiggled that little tooth for over a half hour. She asked me to check it to see how loose that she had gotten it. I SWEAR that I just barely flicked it with my thumbnail; I was not tyring to get it out. I wanted Eden to do it for herself in hopes that she wouldn't be nervous about losing teeth anymore. Nope that dinly little tooth just flew out of her mouth and landed on her leg in the bathtub. She laughed so hard she was crying.
Hearing her laugh so joyously had me laughing and crying, too. I am so lucky to get to be present at some of her most wonderful life events. The lost vacations, grown-up time and sleep are all worth it to me (not that I don't grouch about it sometimes). I am so happy to be a part of her life and so glad that the choices that Rourke and I make allow us to be a part of all of the special events in her life: even the little ones like losing a tooth. There's no amount of vacation time that could ever make up for missing the all-important day-to-day events. It's like winning the lottery every time that I get to witness her growing into such a spectacular young lady.
You know what my favorite time of the day is? When Eden and I hang out on the front porch and just chat, early in the morning before Riley and Rodger roll out of bed. We talk about that day ahead, the hummingbirds, why white butterflies disappear when they land on the rocks, deer sightings in our backyard, swimming, being a doctor, nurse or cheerleader; you know we just chat. She is such a sweet, kind and open little girl; I wonder who she is going to become. I hope that having me in her life helps her to become a strong independent young lady. It would be nice to know that I am a positive influence in her life not just a babysitter for her parents.
Here's an awesome thing that happened lately: Eden went to her Mom's on Satuday (after the big sleepover at Micah's) and so I packed up her pills and her injections and sent her off around 1 PM. Later that evening, Eden called her dad very upset. Her mom was trying to give her an injection and Eden didn't think it was the right time. Mom and Dad talked and Mom remembered that the only time we did evening shots was when we were preparing for the recent stem cell harvest. The injection was delayed until the next morning, as scheduled. Eden knew that it wasn't the right time and she stood up and said "NO, call Daddy and ask"! She is beginning to advocate for herself. I am so very proud of her.
Recently, when Riley went to camp he made the nurse call home and verify the adminstration of his medication. We had made some dose time changes and he wasn't sure that she had it right. Riley is advocating for himself, too. I just couldn't have been prouder of him. Just a year ago he fought us tooth and nail about taking medicine at all, now he's making sure that he's getting it and that he's getting the right stuff at the right time of day.
It is my hope that neither child will ever be incorrectly medicated, as they both know what their medicines look like and what they are supposed to do. For the number of drugs that these two ingest each day, I don't want them to just take any drug handed to them. So far, they're doing GREAT! I couldn't be prouder of them if I was their real mother!
So, Eden goes in for blood counts on Friday morning and we hope to make the rest of the day awesome by going to the zoo. It's very rare that I get to do the "FUN" stuff with the kids, usually I only get the work and then someone else gets to go to the cool places with them. Since Mom, CeCe, Joe, Andy and all the other "fun" people are out in Las Vegas, I plan to get something fun in before scan week starts on Monday. Hopefully Daddy will join us at the zoo when he gets off of work. He needs some fun, too!
Maybe next week Eden, Rodger and I can run off to a water park somewhere, since Riley will be at camp again. We're tired of being left out of the fun trips! We want to party, too. Ugh, her counts will be low next week, so maybe we'll just play in the sprinkler at home. Her health and safety are MUCH more important the going somewhere cool!
Keep cool everyone!
Monday, July 17, 2006
Friday after Chemo, Eden being the lucky little girl she is was able to spend the night with Micah (one of her Fav. Nurse Practitioner) and they had a blast. When I picked her up from Dad's on Sat she told me she shouldn't have any more cookie Dough for a while because she ate so much the night before. She is so funny! THANK YOU MICAH!! Sat and Sunday were spent in the pool as it was the only cool place to be here in Columbus and Sunday both Riley and Eden went to Mama Hopes for a pool Party....... Any day now we should start to see the fins. Eden had clinic this morning and all is good. Her White count was 5.6.. Platelets were 103 and Hemoglobin was 11.2 and we didn't stick around long enough to get her ANC. Sorry! We did spend a few min with Dr. Yeager for her checkup and I mentioned that when Eden chews it was hurting on the right side so I was afraid she had a cavity. (Chemo can break down everything in the body including the teeth) however in this case it turns out to be a 6 year molar so he decided to put her on antibiotics for 1o days so she will be covered if it breaks through while her white count plummets which will start to happen about Friday. While she is already covered with the meds we are going to get her into the Dentist for a once over. After her MiBG therapy her counts as a whole will suffer for up to 6 weeks. We of course hope that is not the case but must plan for the worst.
We hope you are enjoying your summer and appreciate you checking in on Eden!
Thursday, July 13, 2006
Only one more day to go! So far, so good. Woo Hoo! I think that I may be more excited about the end of this round of chemo then anyone else, even Eden.
Eden is tired. She is more tired then I have seen her in quite a while. Even scarier is that she has gone at least twelve hours without telling me that she is bored. Due to the lethargy, I asked the good doctor Nick Yeager to order labs done today. All of her counts were good; I had thought that she might need red blood cells, but thankfully I was wrong. I guess a stem cell harvest, three full rounds of chemo and 4/5’s of another round of chemo is what it takes to slow the princess down. Go figure!
Please keep praying for Eden.
Sunday, July 09, 2006
Eden update and schedule for this week
The preliminary results from Eden's stem cell harvest were miraculous! We hoped to get enough cells for three stem cell rescues; what we got was WAY more! That little girl was a virtual stem cell factory last week; she pushed those stem cells out like crazy. The technician who performed that harvest for us (Bonnie Bowen) was shocked and surprised at how well Eden did. Bonnie had been told not to expect much from this harvest, since Eden has had so much previous chemo the NAYSAYERS (you know who you are) were being super pessimistic. These people just forget that they are dealing with EDEN ADAMS and that she writes her own story.
So today, we had a visit from Jody from StatNurse, our home nurse. She accessed Eden’s port so that I can start hydration at 4:30 AM. She gave me the run down on how to do it and the next time that she needs to come out for a visit, she will walk me through accessing Eden myself. Rourke and I feel very strongly that we need to learn how to do it for emergency situations. It would also be nice to have the knowledge in case we get a nurse who doesn’t do a good job of accessing Eden and then I can shove them to the side and make the situation better and safer for Eden. We’ve had a few that just couldn’t do it and had to ask someone else to do it for them.
Hydration starts at 4:30 AM and runs for four hours. We need to be in the clinic at 8:30 AM to ensure that we don’t have to spend the entire day there.
Here’s the rundown on Eden’s day:
Hydration for four hours before chemo
Vital signs taken at the clinic
Urine sample collected and sent to lab
CBC blood drawn and sent to lab (at least an hour wait)
Hydration started again (hooked to an IV tree with a pump)
Premeds to prepare for chemo
Topetecan (30 minute infusion)
Mesna (15 minute infusion)
Cytoxan (30 minute infusion)
Unhook from IV tree and pump
Hook up to home IV fluids, which runs for 4 hours
Get Mesna from nurse and verify what time to give it at home
RUN for the door.
Mesna push over 15 minutes at home, at the appointed time
Saline push over 15 minutes at home, after the Mesna push
Unhook IV fluids
Push Heparin through line to ensure that the line doesn’t clot with blood
That schedule is so simple and seems like it should be very quick, doesn’t it? Nope! Some days we are at the clinic for six hours or more. Others we are out in four or less. I cannot figure out why some days take SO long and others seem like a chemo drive-thru.
So my day starts at 4:30 AM and doesn’t end until Eden goes to bed. We shoot for 9 PM, but it’s getting harder and harder to get her to go to sleep. Some nights I put her in her bed and when it’s time to hook her up for hydration or to wake her to go to the clinic I have to hunt her down. She might be in bed with Riley, in bed with Rodger, on the couch or hiding out underneath our bed. For some reason she thinks that it’s ok to wander around at night. Poor Riley is very tired of waking up to a snoring, bald little sister hiding under his covers. I don’t know who told her this was ok, but it does make my job harder. I cannot hook her up to hydration and leave her in bed with someone else. They might roll over and pull the IV line or crimp it or GOD forbid, pull the needle out of her port!
So we’ll do this schedule each day this week. We'll add in a visit to the audiologist on Monday, on Saturday, we will start doing daily injections to boost her white blood cell count and we’ll have two clinic visits next week, as well. The following week will probably be two more clinic visits. Don’t forget that at any time Eden may need a transfusion, which extends the day by a couple of hours, at least.
I may or may not update this week. I have to admit that this is taking a toll on me emotionally and physically. It’s all I can do to get through chemo week, let alone try to update the blog, cook dinner, make sure that someone is watching out for Riley, do laundry, mow the yard, pass out meds, pass out food, keep Eden from hurting herself due to low platelets, get Riley to his appointments, try to spend an hour or two with my husband, push kids into baths and bed and all of the other things that have to be done in a day. I wish I had a house elf like Dobby (from Harry Potter)!
Hope your week is grand!
Friday, July 07, 2006
The harvest is done
The three day stem cell harvest is done. The yield for the first two days was more then we could have dreamed for in a million years! We are waiting on the results from today, but are hopeful to have gotten enough stem cells for three rescue doses from this week, not including the previously harvested cells from 2004. Talk about answered prayers!
Eden will go home later this evening to hang with her mom for the rest of the weekend.
She starts round four of chemo on Monday morning. She will have the chemo outpatient, so we are going to have a great week of fun, friends, chemo and food. She actually wants to stay in the hospital for this round, she gets so spoiled when she is here that she doesn't want to leave.
Riley returns from church camp tomorrow. I can't wait to hear all of his stories, I know that he had an awesome time.
So we wait another 4-5 hours for the catheter removal and then WATCH OUT while we run for the door!
Have a great weekend, we plan to do the same!
Wednesday, July 05, 2006
Keep your fingers crossed
We hope you all had a wonderful Forth of July! Eden had a wonderful long weekend! Of course she swam and Swam and was able to spend time with some of her favorite people and life was good. I believe this is one of Eden's most Favorite holidays as she truly loves fireworks and so of course we made our annual trek downtown with all of the family to sit behind COSI and wait for the show to begin! We always get there early to get good parking and a good seat and then just hang out, people watch, play cards and eat lots of junk food and this year was no different except some of our very good friends had a camper right behind us so not only did Eden get Mick all to herself but she also got Madi and Abby to play with and play they did! We missed our sweet Riley as he was off at camp and wont be home until this weekend. It just wasn't the same without him!
Eden was admitted to children's at 6am this morning to have the catheter placed in her groin to start her stem cell harvest. Please keep your fingers crossed that they get a good yield so she wont have to go through this again in a month. If you would like use the link to the right to send her an E-Card. She will be there through Friday.
Have a great week!