First the important stuff, Elizabeth had a bone marrow biopsy and MIBG scan last Last Thursday and Friday and we just got the word that they were both clear! no evidence of disease. Now that that is out of the way, sorry for the long hiatus. We have been operating on the “no news is good news” principle. Plus I apparently have forgotten how to use wordpress. I wrote a posting three days ago and thought I published it only to log on tonight and be unable to find it anywhere. Part of that missing post was a thank you to Amy and Rick for putting together the gathering last Friday. It was good to see all of you, especially that cute young chick I was sitting next to, who ever she was! You are all in our hearts. Elizabeth is back in typical 4 yr old mode which is absolutely fabulous! The only trauma in her life, other than having her friends play with her “special” toys is getting her immunization shots redone. The marrow transplant wiped immunity imparted by the infant shots. These shots are, for her, the worst thing that has happened in the entire course of treatment. Month in the hospital with no immune system, throwing up the bloody remains of her GI track, no problem…dip-tet shot, you would thing they were amputating her arm without even giving her a stick to bite on. She still loves to go to the hospital but is terrified of her pediatrician! We will see Dr Grupp some time in the not too distant future and map out the next tests etc. Until then.

The scan looked good. Dr. Grupp had e-mailed Boyd but the e-mail was buried…so I e-mailed Grupp this morning and having a far higher level of OCD than does Boyd checked the in-box until the message came up!

And things look good. No change from last time. So we have another 3 month reprieve, which means the make a wish trip to Disney is a go, as will be a trip to St. Louis to see my new nephew some time around Christmas. My sister gave birth on Monday to a 5 lb. 6 oz baby boy. She was about 7 weeks early but she and the baby (no name yet, but elizabeth calls him Timtin her attempt at “Clinton” a name under consideration) are both fine. when I figure out how to do it I will post a picture of the sweet little dumpling.

Yesterday, besides being a red letter day for the country, was a big day in our lives as well …Elizabeth went up to CHOP to be injected with the radioactive iodine that her neuroblastoma, if it is there will suck up, and she will be scanned today for glowing. Having the election to focus on was something of a help because it distracted us from this. Mayzie was wonderful in offering to go up with Bo and Elizabeth and so she helped entertain Elizabeth while they waited for the IV’s etc. I was very relieved that she could do this. I had planned to go up with Boyd and Elizabeth but there is so much work I have to do this semester, that to have a day when I could just work in the office with no distractions meant that the rest of the month would go more smoothly. Having Mayzie go with them meant I felt less guilty and I think it made me more productive at work.

Today Boyd and Elizabeth go back up for the scan. Elizabeth will have to lie perfectly still while they take what is essentially a full body MRI. Often children are sedated for this, but Elizabeth has been lying flat and still for these tests since she was 2, so today should go reasonably well.

I was telling Boyd how sorry I was that he had to take her to get this done today and how sorry I was that Elizabeth was having to get this done, but Boyd pointed out that we are really very fortunate and that things could be so much worse….and I know that he is right, truly things could be so very much worse and I need to be very grateful, everyday.

We will post when we get results. Peace

Last Friday less than a day before the Curesearch walk a check arrived in the mail for $450 this was money raised by the students in Human Development and Family studies at UNC Greensboro selling tee shirts to raise money and awareness for Pediatric cancer research. It seemed like providence that it came when it did, so we signed the funds over to Curesearch. Then, when we were at the walk we met the Hurlock’s, their support and understanding through our journey with Elizabeth’s cancer has always been a comfort. And I was so glad that there was an opportunity to honor and remember their Elizabeth during the ceremony. And of course our Annie and Nancy were there, as they have been through out this odyssey a cherished part of our family.
The day was so bittersweet. Words escape me in describing everything that went on. I continue to be completely awed by the strength so many people……Amy, Kerrie, Jean and others whose names I won’t write, as for some the journey is so personal….
I think that we are provided with teachers as we go through our lives. These last 18 months have introduced me to many who I will always consider mentors.

Martha

Hi everybody:
Saturday is the milestone walk in Wilmington at the riverfront. Anyone is welcome to join our team – Friends of Elizabeth. We don’t have an official team color, but any of the princess colors will do…..and if we look like a rainbow that will be just fine as well.

https://secure2.convio.net/cs/site/TRR/784484959?JServSessionIdr001=0v5erq3791.app8a

I think that our family will be one of the lucky ones there, as many people will be walking in honor of children they have lost to the cancer beast. The battle rages on and we must continue to help those still fighting and those who will be fighting in the future. We can find better treatments and even better real true cures. Thanks to everyone who supports anyone in this fight. The luminaria on the banner was one at a relay for life event that I dear friend walked in honor of her Aunt and Elizabeth. I love it and wanted to share it…I only wish I could get the entire picture to show.

take care.

Yesterday Elizabeth and I attended a worship service at St. Mark’s Lutheran Church in Wilmington. It was a lovely service full of welcoming people with a message to give thanks and gratitude for all of God’s creation, including medical technology and medicine. The hair on the back of my neck stood up when I heard this, because Elizabeth and I had gone there to thank them for the prayer quilt they made…and just by chance happened to attend when the topic was one that is so central to our lives right now!

The prayer quilt that the congregation of this lovely church made is posted above. what you can’t see is that at each corner of each fabric square there is yarn left for more knots to be tied as prayers are said…It is a gift whose value is beyond measure…that people were thinking and praying for my baby, and they had not even met her…..it was humbling and empowering all at the same time.

People are really quite extraordinary when given the chance. We are so grateful to the prayer quilt ministry at St. Mark’s and to Katie Pollock who brought Elizabeth’s situation to their attention. There are no words of gratitude powerful enough to convey our feelings of thanks

These ideas were copied from Arden Bucher’s site. Arden lost her fight with Cancer this summer, not because of the cancer but because of the treatment. So please take action in her memory and for those who yet must face the treatments ahead, lets work to “Kill the Cancer not the Kid”

On September 29th – Eat at CHILI’S: proceeds go to St. Jude’s Hospital for Children.

COMPLETE THE CURE

The University of Minnesota also has a fundraiser for childhood cancer research. Complete the Cure sponsors make small donations for each video viewed. During each video, the watcher answers a quick question (it doesn’t matter if it is answered correctly). http://www.completethecure.com/index.aspx

Gold Ribbon on Products Petition

This petition was started by Linda Lieser, NB angel Isaac’s mom. She is determined, through Isaac’s foundation (http://www.isaacsfoundation.org/), to get corporations to put gold ribbons on products to raise awareness about pediatric cancers and to raise funds for research. Linda designed the gold ribbon/”hope” Childhood Cancer Awareness CaringBridge template.

http://www.thepetitionsite.com/1/gold-ribbon-support-for-childrens-cancer-on-consumer-products

Gold Campaign for Target

Cyndi Poeggel has initiated a letter-writing campaign to Target requesting a gold product campaign for September 2009 for the benefit of pediatric cancer research (similar to the “pink” one that has been featured in recent ads which benefits breast cancer research). Greg Steinhafel has been CEO at Target since April, so this may be a perfect time for this idea to be heard.

This was summer unlike any other. We were grateful for everyday Elizabeth got to swim, run play with friends and visit with family. (And we were very glad to hear that the Ranna’s down in Texas where we had SOOOOO much fun in August were spared the wrath of Ike).

But we read with our hearts breaking for the families of children who lost their brave fights with cancer. We wept when we heard that Matthew had a new and very aggressive form of leukemia and we were stunned that Arden lost her struggle, not to cancer but to the toll that the treatment took on her young body.
So as we look ahead in our calendar towards Elizabeth’s 3 month scans set for early October we would like to spread the news of some pediatric cancer awareness events

On October 18th there is a curesearch walk in Wilmington on the riverfront….I formed a team “friends of Elizabeth” if you would like to join us, we can have a great big team! The link is

http://host.curesearch.org/site/TR/Walk/General/1209447295?pg=team&fr_id=1140&team_id=4090

I tried to get the picture cropped, but this was the best I could do…see the curls? She has them all over. This picture was from our neighborhood pig roast. Yep, that the way we roll! Thanks to Cathy for sending me this copy. We are grateful for everyday her head has these curls and she is smiling. Take care

After days of nail biting and pretending not to be worried we finally got the results from last weeks bone marrow biopsy and MIBG scan. Both were clear. Yahoo!! Herr Doctor Professor Grupp is out of the country so no particulars but the all clear is good enough for me. We are good for another 3 months.