Welcome Sophia Hope Bell!!!

Welcome Sophia Hope Bell!!!
Maddy has officially become a big sister!!

Monday, December 10, 2007

Ck out this link

Thanks to the update from James Runde's site, I found out that CNN had a little blip on Neuroblastoma yesterday. Neuroblastoma finally got some airtime! I wonder if Dr. Cheung, who was one of James doctors was one that any of our doctors talked to. I know that a few different times our surgeon and our Oncologists have called Memorial Sloan Kettering for advise.

http://www.cnn.com/video/#/video/health/2007/12/09/snow.cookies.for.kids.cancer.cnn

Heres an idea, instead of making Christmas cookies this year buy them and help out a great cause:

http://www.cookiesforkidscancer.org/Pages/Page.aspx

Love,
The Bell's

Saturday, December 8, 2007

Friday Update

Well, what a Friday we had...let me begin. We were at the hospital at 9:30 for the MRI at 11:45. They bumped us up b/c the child before Madelyn had to cancel b/c of a cold. I was absolutely dreading all day and afternoon w/Madelyn not being able to drink or eat. We were originally scheduled for 2:30, but the called me at 7am to ask if we wanted to be moved up and I said "absolutely". We had the dr. listen to Madelyn b/c she has been a little stuffy, but they said she sounded great. She went in about 11:00 for her MRI. While she was in Rick and I went to the clinic to see if there would be someone to read the scans and give us the results on Friday. Rick has to fly out on Sunday for California for work and won't be back until Thursday and we just wanted to know the results before he went, b/c God forbid the news was bad, I didn't want to get it alone and he would have had to fly back early if we were to start treatment again. They told us that there were a lot of patients on the Oncology floor and only 1 doctor so we wouldn't get the results until Monday....bummer!

Anyway, she came out of the scan and was awake before they could even get her back to the Peds. Sedation room that we were waiting for her in. There was only one nurse rolling her gurney back and she woke up in the elevator and was trying to climb out of the gurney. Luckily, one of the nurses from the Oncology clinic recognized her and stopped to help get her back in the gurney until the got her back to the room. She came too pretty quickly, drank about 2 glasses of apple juice and we left. Rick went to work and Madelyn and I stopped by Stein Mart before going home. Madelyn hadn't had anything to eat all day, so she was eating Teddy Grahams and drinking her water and was fine.

We got home and she had a couple bites of lunch, but not much. She just wanted to play. So we were playing w/her toys and went into her room to color. We were coloring when I realized her hands and lips were purple and she was shivering and was freezing cold. I put a sweatshirt on her and grabbed her comforter and decided to sit on the couch with her until she warmed up. I called the Peds. Sedation number just to ck w/them to see if this was normal. I thought maybe it was the sedation medicine still getting out of her system. This was at 3:30. We sat on the couch and she fell asleep immediately. She slept for about 2 hours. I decided that was long enough so I tried waking her up to give her some juice or something. She didn't want to wake up very easily. She was very groggy and just not herself. I called Rick to tell him. We decided to watch her and and thought maybe it was from having such a long day. After hanging up from him I felt her head and it was burning up. I took her temperature in her ear, in one ear it was 103.7 and in the other it was 104.2. I put her in the car, called Rick and told him to meet us at the ER.

We got to the ER about 6pm. While on the way there, I called our Oncologist and told him what was going on and he said to take her to the ER. He called ahead and told them we were on the way. We got there and didnt' even wait 2 mins before they called us back. 2 doctors came in to talk to us. We really liked the Resident, he was very calm and concerned. Which is what we needed b/c we were both a nervous wreck. We told him that we were just here this morning for an MRI and he said " I know I read the scans"...and paused. At this time a wave of emotion came over me. There were the 2 docs and a nurse in the room w/us, Madelyn was burning up, and it felt all too familiar from almost 1 year ago to the day when we got the worst news of our lives, that she had Cancer. They knew something that we didn't and in my mind, I don't know if it was b/c I was sick about finding out the results of the scans, but I just clumped it all together and assumed that one thing had something to do with the other. It turns out that it didn't. They doctor looked at her right ear and said it was very infected. This surprised us, b/c Madelyn hasn't been fussy or even pulled at that ear one time. I told them that this past week her right eye has had some yellow icky stuff coming out of it too and her right nostril has had some nasty, green/brown boogies too. He put all of that together and decided that it was H-Flu, which is a bacterial infection. We are on 10 days of antibiotics and after Tylenol, her fever was gone and we were home by 9:30 last night.

We sweet talked the Resident Dr. and he let Rick look at her scans and the findings of the Radiologist...MADELYN'S SCANS ARE CLEAR! Even better, the dead leisions that were in her liver are gone and her liver is completely clean. They tissue of her primary is still in her chest, but has not changed and the Radiologist said NO EVIDENCE OF NEUROBLASTOMA!!! HOOORAY! We are so thrilled. I also forgot to post her VMA/HVA levels. They are actually down and that is great. VMA-12.6 (down from 15.1 a month ago) HVA-16.9 (down from 23.9 a month ago)

What a wonderful Christmas present. We are so grateful for Madelyn's health. Please contiue to pray for Madelyn's health and every child who is fighting this terrible disease. We want to wish you all a very Merry Christmas and a very happy New Year. We will be kissing 2007 goodbye and welcoming a very happy, HEALTY new year!

Love,
The Bell's

Monday, December 3, 2007

December Update

Well, for those of you who were aware that our first scan since Madelyn was declared NED was postponed because we fed her too close to the sedation time. We usually do well with this stuff, but they didn't call with details and we slipped up. We rescheduled for 12/7 at 2:45PM, and we will remember not to feed her after 7:30AM, I am quite sure of this. It should be a LONG day, but the hope is that we get confirmation that everything is still going well.

Madelyn is continuing to develop into a great little person. She has so much personality. My favorite thing is when she gets really excited about something. She oohs and ahhs without prompting. It's genuine excitement.

On the 2nd we had the annual Cancer Center Christmas party at Saluda Shoals Park in Irmo. Afterward, we rode around the park and looked at all of the lights, just like we did when we were in NY with the exception of the snow! I encourage anyone who has an evening free in Columbia to make it over to Saluda Shoals this holiday season.

The message at church this past weekend was about our purpose. I felt like the speaker was talking directly to me as I have been struggling lately with what my life's purpose is. I ask you to pray for my family and me that we continue to grow closer to each other and God, and that I can see God's purpose for us when the time comes.

Love,
The Bell Family (Rick)

Friday, November 16, 2007

VMA/HVA Results

I am sorry we haven't posted the results until today, but we just got the results at the beginning of the week. VMA 8/29/07- 15.1 VMA 11/12/07 - 15.1 HVA 8/29/07 - 22.7 HVA 11/12/07- 23.9. Per our Oncologists, although the HVA is slightly elevated, they are still in normal levels so they are not concerned at all. Madelyn had her flu shot on Tuesday and did very well with it.

Everything is go ahead for the 29th, we will update when we know something.

Wishing everyone a wonderful Thanksgiving!

The Bell's

Monday, November 12, 2007

O So Long It's Been!!

I feel like each time I post, I must apologize for how long it has been since our last post. I guess, I should just post more often, then I won't have to apologize! Well, life has been very fun and busy! Since Madelyn had her port out on Oct.1, we had the go ahead to go to PA and NY. Madelyn met her Great Grandmother for the first time. My Grandmother fell in love with her, of course, who can resist those eyes and that smile. We made our way to NY and stayed a week with my brother and his girlfriend. We went apple picking, went to a pumpkin patch and went to a petting zoo. We went to the NY State Mueseum and to a the Saratoga Springs Children's Mueseum. We had a blast. I will update with pictures later. We stopped over in Fulton (the little town I am from) and stayed with Chuck & Jackie, long time family friends, and made our way on to VA for the night where we stayed with my friend Erin. Finally we made it home and boy are we still exhausted!!!!:o) While in NY we met a new friend of ours, Mackenzie Lanae, her link is to the right. She too has fought NB and won! She is the most precious little one and her and Madelyn hit it off from the first minute they met. We met at a play area at the mall in Albany and people kept asking if her and Madelyn were twins! She has the most beautiful blue eyes and the kindest heart. Madelyn and I know that we will be life long friends with her and her mom Michelle. Please pray for Mackenzie as she will have a G-tube put in on 11/28 to help her with eating. Mackenzie's primary tumor was in the same place as Madelyn's, in her chest and the surgery to remove it damaged the muscles that help her swallow.

We have an Audiology checkup tomorrow afternoon to ck to make sure Madelyn's hearing is fine after the chemo. We will get her a flu shot after that. She has a dentist appointment next Tuesday where they will ck out her 6 shiny teeth. We are all anxiously awaiting our drs. appt. on the 29th. We will have the standard ckup with the clinic - urine test & labwork and then at 11:45 we will have the MRI to make sure everything is still clear. I am expecting good news, but as they told us during chemo, this is the hardest part. Holding your breath until we get the final word from the Dr. We still haven't gotten her VMA/HVA numbers from the 8th. Hopefully we will hear today or tomorrow. I will post those results as soon as we get them.

We want to tell you all how much we appreciate you all cking in on Madelyn, the words of encouragment and the emails that we get. As you can see from previous posts, about James Runde and Grace Oughton, this is a terrible disease. We have gotten GREAT news but it is a long road. We just continue to pray for Madelyn and that her disease NEVER comes back and that she just stays a wonderful, healthy blessing from God, because that is what she is!

We love you all!

Monday, October 29, 2007

Please pray for The Oughton Family!

Brave little Grace Oughton earned her angel wings at 6:23am this morning. Please pray for this family in their time of need.

Grace's Website

Thursday, October 4, 2007

Cardiology Results

Well, it was a brief visit. Madelyn was great. The cardiologist stated that the PFO was a pinhole and they would see us back in 2 years. She has no limitations on her activity other than until we run another echo, no scuba diving. When told that she couldn't scuba dive, Madelyn showed no emotions. I think she's OK with just snorkeling for a while.

We also had her monthly visit at the Children's Cancer clinic. Her blood tests all came back great. She walked unassisted around the entire office and was the talk of the clinic. We submitted a urine sample for VMA/HVA levels and should have those results in 2 weeks.

Madelyn's surgical incision looks good. Unfortunately, they placed an occlusive dressing on the site that adheres to the steri-strips. We removed them tonight and replaced them with some we have at home. She took a bath tonight and is now officially back to her routine.

Sheila is getting some birthday pictures done at Portait Innovations next week before they depart for PA/NY. We'll post them on Picasa when we get them. Just in case you want to see all of the picture albums, go to this address

http://picasaweb.google.com/rick.bell