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Wednesday, October 4, 2006 7:03 AM CDT Ok Ok-long time no hear! Remember-no news is good news.
Zoe is moving a long and doing well. She has had some health issues-such as rota, clods, flu and respitory but that is all expected.
She is doing a lot of work for Make a Wish and is liking the attention.
Please know that while we are not in communication much, we do like to hear from you and we appriciate all your prayers.
We love you.
PS: We will be live in Peoria on OCt 14 for the Camille's at Grand Praire. 11-1 -stop by if can.
Sunday, July 23, 2006 9:56 AM CDT Sorry so long for an update but really nothing new is happening.
We are headed to Memphis for a check-up on July 24/25. We have Tesah with us and we have had a mini-vacation. We stopped to see my dad in Quincy and then came to a "fun" hotel in Jackson, MS.
The girls have spent the time swimming, eating, and watching TV. We will shop a bit today.
We are bit nervous about the check-up as Dr. Santana is on Sabbatical until next June and we will have a new doctor, Dr. Furman. I know he has been several of our friends Dr. and they love him, however, it is never easy to start with someone who does not know your history.
Please keep us in your prayers.
I will update (really) when we have results.
We love you!
Tuesday, March 7, 2006 5:14 PM CST I am so bad for not getting back to everyone sooner!
Zoe is still tired and coughing but back at school. She has caught up with her school work and is doing fine. We notice that she rest more and still complains but otherwise is fine.
She sold Girl Scout cookies and we have been focusing on that for the last week, but more than that she loves the meetings. That is all she talks about "is it Girl Scout night? Today is the meeting-right" and several other phrases. Thank God she is enthusiastic.
Her video from the Make A Wish shoot was just wonderful. I wish you all could see it. How very amazing that is was. I just love it. We are so proud.
We would ask that you keep all our friends that are still fighting this monster in your prayers and remember-WE LOVE YOU!
Friday, January 27, 2006 12:48 AM CST Hello there-
Hope the new year has been happy so far.
Zoe is one sick little girl-she started two weeks ago with a fever and stomach pains and then general aches. She ran a fever and we went to the Dr and they thought maybe a sinus infection.
This last Monday, she began complaining of pains so bad she was crying and then the projectile vomiting -she had filled 4 small cookie buckets in one hour and then would sob in pain.
We took her to the ER and she was admitted and there she stayed until today. They did a CAT scan because they thought they felt something in her pelvic area-that did not show a mass but swelling. Her blood count soared to 18 and they began other test-she was on IV's and two antibitoics and we feared the worse but they said they did not think it was cancer. She then had a poor urine test with red and white cells and blood in it.
They then tested for CMV (like the rota virus) and today with a diagnois of ROTA they released her and would call with the CMV report. She has other illiness like this before-this is just the worse.
She is off dairy and most foods until she sees the dr next week.
Thanks to all of you who have called and stopped by. It is nice to have friends.
Please take a minute to sign the guest book as she loves to read them HERSELF!!
We love you.
Wednesday, December 21, 2005 7:01 AM CST All is well at least with the blood work and urine markers-the other test was a bomb as she was coughing to much and could not be done. I figure a little good news is always better than the other option.
We had a great time in Memphis and ate way to much. Carol and Tori left just hours before we arrived and I was so sad about it-HOWEVER, Lisa Fay was there with Kelsy and she looks great.
We also saw Jeannie from our Ronnie days, and her son has relapsed-his donor transplant did not take. We spent about an hour together and I am asking for prayers for her and her son.
We hope that everyone has a wonderful holiday season and a blessed New Year-Please remember that you could be walking a whole different path than yesterday and be thankful for all you have.
Remember in your thoughts and prayers all those families fighting for their child and the ones who are facing a holiday without theirs.
We love you!
Saturday, December 17, 2005 5:38 PM CST We have arrived in Memphis and are enjoying the warmer weather. Zoe, Alex and Trev are anxious to hit the play rooms and Beale St.
We have a long day on Monday and that will proof to be a testy day for all of us. Thank God, Sarah is here with us to keep the boys occupied.
Our thoughts and prayers have immediately went to those faces we will not see this time or ever again, Zoe, Stanton, EmmaGrace, Ali, Jessica, Aaron, Lexi, Samuel and the list goes on. Tori and Carol checked out of the Grizzlie house as we are arriving and I am just so sad that we did not see them.
Keep us in your thoughts and prayers and as soon as we know, you will know.
We love you.
Wednesday, November 30, 2005 8:28 PM CST It has been nearly three years that we have been on this journey-it has been a ride that we will never forget nor will we ever forget the kind and loving angels that we have loved and lost.
Zoe is doing so well-never ever did we expect her to be this good and of course, we are forever thankful and blessed.
She is a blond handful with the temperment of a stinker beyond words! She is happy and healthy and that is all that matters.
Her acceptance of her fate is remarkable. She has attended more funerals that any child her age needs to and she still talks of the friends she lost and her time in Peoria and Memphis. She looks forward to every trip and she is never scared or unhappy about going. That is the gift of St Jude.
Tomorrow she is modeling for St Jude in the Peoria fashion show! Monday-we are do Make A Wish speech at a recruiting meeting and next Friday, we are returing to the Fairmont in Chicago for the Navy Pier WinterWonder land and American Girl Doll store. She is taking her cousin Tesah and we are so excited!
On December 17, we had to Memphis for testing-Please keep is in your prayers.
Three years is a long time for all of you to have stuck by us but at this time-we thank you, we love you and ask that
you remember Shane, Aaron,Brad, Laura Lexi, Trey, and several others that lost their live this time last year. We ask that you remember, EmmaGrace and Stanton's families as they face this first chirstmas without their babies. rejoice with us that Mallery, Luke,Anna, Ginny, Zoe, Gracie, Travis, and so many others have beat this monster.
Please Pray for our dear friends, the Smoodes as they face the first Christmas without Lenee, and my uncle's family as they face life without him. Please keep my dear father in prayer-I am having a hard time with his continued declining health.
I will update with test results as soon as we know anything.
Happy Holidays!!
We love you.
Tuesday, October 25, 2005 5:29 PM CDT I told you I would update before December! All is well in the household, although Zoe did give us a scare two weeks ago when she was so sick that we kept her home.
I took her to the Doctor and was told there was a lump in her neck-small but able to be felt. I was told to do antibiotic and come back, but Mac felt we needed to show at clinic and we did. Nervous but there. Mac said he felt it was scar tissue and we went home. Mac was to e-mail, Dr Santana and get back to me if they want to see her earlier. So far no news, that is ok with me.
Zoe has been running and playing and getting strikes at school for talking-so I think she is feeling good. One day, I will quit going jittery when she is sick but not this month and I bet not next either-Dec is not looking good....
We love you and ask that you pray for young and old alike battling this thing called cancer.
Saturday, September 17, 2005 7:06 AM CDT Yes-I know long time no write! I just feel like there is not much to say and that we are all so ok that it is kind of like -AHHHH.
Zoe is active, healthy and a handful. She loves first grade and has adapted very easily. She still thinks school is awesome and likes to do home work. It is amazing.
We continue to carry out activites for St Jude. She will be in the style show on Dec. 1, and we are working at a Chili's on Sept 26 when their proceeds go to St. Jude.
Our thoughts and prayers coninue to be with our friends who are still batteling the monster known as cancer and we continue to wonder why. I know that it is a question that we will never have an answer to but.....
We are blessed-truly blessed to have all of you still thinking of us and remembering us in your prayers.
Zoe's next appointment at the "jude" is December 19. I promise an update before then.
We love you!
Saturday, July 30, 2005 11:11 AM CDT All is well on the Wolsfeld Front! We have enjoyed summer and had a bit of excitement but mostly laid low and just relaxed.
We spent a week with all the kids in Michigan and had fun-except I almost drowned when Zoe and her float got away from me and the next thing I knew I had oxygen and was letting go of Lake Michigan water- I was a bit shaken for awhile. My husband, told the EMT's that it was good I had turned Blue and not green or red as someone might think I was a Sparton or Ohio fan!! What a spouse!
Zoe is so brown and learning to ride a bike. She is growing so tall-it is amazing. She has lost some teeth and is so proud of that.
On Aug 6-Zoe, Brandy (my oldest), Bobbi, Vicky, and I will be on the local telethon for St Jude-it will be a long day as we send the runners off from the Mall to Peoria at 6am-we then solicit and meet up with the runners in Chilli and go to the Civic center for dinner and the telethon. It will be amazing. Last year was a hoot and so emotional. We are looking forward to it.
Zoe starts first grade on Aug 22 and it is so hard to believe- She is also one of the National Make-a-Wish foundations fund raisers for their Christmas solicitation. The brochure is wonderful-full of her story and the poem on this page PLUS photos of her wish at the joffery.
We will close with hugs and kisses and a request that your prayers be sent out to all those fighting this monster and for Zoe to stay in remission.
We love you!!!
Wednesday, June 29, 2005 7:29 PM CDT The news you have all been waiting for-She is clean AND Dr.Santana is so confident, we do not go back until-Ready-December 19!!!!!! We are thrilled and happy.
I have to say it was a very diffcult trip-so many have passed and it is hard to not see all the dear faces in clinic but the high point was TORI-She and Zoe are the lone surviors of the Memphis Ronald MCdonald-Class of 2003. Tori and Carol arrived Tuesday and I had paced and paced until they arrived.
It was awsome to see and share tears and memories with Carol. Tori and Zoe held hands and played and danced. We all went to Joe's Crab Shack-a huge favorite of all RMH kids.
I spoke to Trish last night-it was nice to hear her voice and know that she is doing ok and is back to work following the passing of EmmaGrace. You know not a day goes by that I do not think of this family and shed tears for all the kids we have lost. I can not tell you the heartbreak we experinced once we arrived in Memphis and saw no one.
We have made a few new friends but like Carol we are hesitant to get too close.
A huge Thanks to Bobbi for going with us -she was a life saver many times when Zoe was being Zoe.
I will continue to update periodically but unless I have huge news -it will be less.
Please know that we know we have been blessed by everyone on this journey with us, by our family, our friends, known and unknown and our dear St Jude family. She is not out of the woods but the clearing is in sight. Bonnie (our neighbor ) said right after Zoe was diagnoised and knew that less than 30f nueroblastoma kids survive 5 years- "Why not Zoe-she can be in that 30 That is true-please continue your prayers for her to remain in remission and for all our dear St Jude families.
We love you.
Saturday, June 25, 2005 8:18 PM CDT
WE are headed out to MEMPHIS and the "Jude" tomorrow- Please keep us in your prayers.
We love you.
Saturday, June 11, 2005 5:28 PM CDT It has been a very diffcult week-one that is has been spent in tears and memories.
Our darling, Emmagrace has won the fight and earned her angel wings Monday. It was just so hard and it still has me breaking down. My phone call to the Hamptons ended up with me being the one who needed comfort. Barney, Trish and Eli we love you and I am sure Emmagrace, Stanton and Zoie S are rejoicing all over heaven.
St Jude will be so hard to visit now, all our buddies from two years ago when we were living there are gone except wonderful Tori. Every check-up we reconnected with Zoie, Stanton, or/and Emmagrace, Aaron, Samuel, Issac, Lexi, Alexis, and so many more, now all are angels. I just hate it and I am so very pissed that these children are gone. I love my father but he is so ready to go and has said that he would have trade places with any one of these children.
This leads me to the other part of my week-which was to put my father in a nursing home as he has pretty much given up the will to move on or recover. I always said I would not let him to go to a facility but at the end he could not go to the bathroom, stand, eat or anything. He had, they believe, another stroke and barely talks clearly and had not shown too much improvement. This has been so hard on Elmer and I that we can not even fathom what lies ahead.
Last but not least, Sarah, (our 18-year old)has packed up and moved to Michigan, to start college at Hope. She has been our life line since Zoe got sick and was such a help with my DAD, BUT BEYOND THAT, she is an awesome kid with a level head. She is living in our home there until August and then moves to the dorm.
Zoe has enjoyed her week but sure misses Sarah and Grandpa. Please, Please pray for clean scans as we are not emotionally equipped to deal with much more.
We leave you with a request for prayers and support.
We love you.
SATURDAY, June 4 2005 2:49 PM CDT Ok- all you wonderful people-There are three importatnt people in our life that need prayer-
NOTE: Charlott is Cancer-free-tumors are some type of invection!!!! PRAISE GOD!!
The fishing tournament was a blast and Zoe loved it-Thanks to EARL O'Brien for doing this for the ST JUDE KIDS!!
KEEP PRAYERS COMING FOR 1) EmmaGrace is entering her 7th week on a vent in ICU in Memphis-please let that dear family know that we are all thinking of them-www.caringbridge.org/ar/emmagrace
2) Lenee and Jim Smoode as they are in need of prayers for Lenee's cancer and Jim's recent surgery.
3) My father is back in the hospital, 3 stays in one month. Please pray for wisdom and strength for our family who have some tough desicions to be made regarding care.
ZOE heads back to Memphis at the end of the month for test and scans. Please pray for clean results.
Much Much thanks for listening to our request.
We love you.
Monday, April 25, 2005 4:23 PM CDT Hello-
We remain fine and dandy and I am sure that does not surprise anyone ,except Elmer and I, who are always waiting for the next shoe to fall.
Zoe's sinus's are under control and she is breathing easier. She did not play soccer but is our riding her bike but not her Barbie Jeep, as she is shall we say, a horrible driver. She and her jeep-have had a few visits to the garage wall and trees, and the porch. Tesah, however, can drive so she and Zoe are content with that arrangement.
We are asking for prayers for:
Dear EmmaGrace, who is entering her 4th week on a vent. Please visit and support her and her awsome parents www.caringbridge.org/ar/emmagrace.
Also for our friend, Tom Quartucci, a local police officer who was brutally attacked by a perp-who later killed himself. Tom had a serious head injury but is moving along.
For our friend, Lenee, who is continuing a very diffult battle with a rare cancer.
My dad, who has just gotten home from intensive care and now needs a walker and can not be left alone for very long if at all.
PRAISES:
A local UCC church is doing a drive for the JUDE and RMH. We thank them in advance for the awesome job they are doing. They are doing the Lord's work for those families that are facing the same road many of us have been down. GOD BLESS THEM.
MUCH LOVE-WE LOVE YOU!!
We are forever blessed by your continued support and prayers-keep them coming.
Thursday, March 10, 2005 4:03 PM CST We are home-got in late last night. And the news is:
SHE IS CLEAN!!!!!!!!!!!!
Her major issues are that her entire sinus cavities are infected and the MRI showed serious sinus problems. She also has a bit more hearing loss because of the fluid that keeps building up even with the tubes.
The fevers and headaches and even the nauseau is due to sinus. She will go to Peoria and see Dr MACallister on Tuesday. We will return to Memphis in June.
Saw Emmagrace, Julie and Travis and Kandis, and our favorite nurse, Jessica, everyone looked great. Thank GOD!!!
Huge Thanks to my sister, Joyce, for going with me.
More later-
We love you.
Tuesday, March 1, 2005 5:56 PM CST Ok- So I am not very good at updating these days. I really do not have much to say except that I have some real issues dealing with the loss of so many kids in the last few months. I have shed so many tears and have not called some of the parents I should as I can not stop myself from breaking down and they are the ones that need comfort. I am so so pissed and I can not think of another way to put it.
There is also the guilt issue as well as the fear issue that 1) mine is NED and doing well and 2) OH GOD-is my child next to relapse.
So many people say "why do you feel guilty" I say it is just like an auto accident-You sure are sorry your friends did not survive but you are sure glad that you did. Zoe is too young to have "survivor guilt" so I guess I feel it. Unless you have walked in the shoes on either side-you can not understand. I have talk to a lot of parents who feel the same way. I am very angry at the powers above and it something I have to work out. I have heard and read the inspiring thoughts from those who lost their children and I am amazed and awed-I doubt I can be that strong if the time ever comes.
Zoe and every other cancer child, is too young to have endured all she has and all she will. I am so tired of people saying "oh look she is fine she has her hair back. Cancer victims do not always lose their hair and many look very healthy-SHE IS NOT!! She has no immune system and a 75% chance of relapse in the next year-Thanks but take a good look-she has circles and scars and a hell of a memory of what has happened and what will. What do I tell her when she says "why mommy did God take my Lexi or Laura, or Stanton or Trey" "Yes-Mommy I want to say goodbye to Lexi-make them raise the lid." If I could figure it out or someone can tell me and then maybe some of the anger will go away.
We are headed to Memphis on Sunday, with my sister,Joyce. Please remember to keep Zoe in your prayers and please pray for clean scans. She has a rough time at many points so we are hoping it is just regular winter crud. She will be presenting her birthday presents that her class gave her as well as many family and friends.
We made an apperance last week at UOFIillinois for the St Jude fundraiser, "up till dawn". Jamie Brendemuhl from the Valley was there and the kids were wonderful. We got home late but enjoyed it. Friday we are going to Northern Illinois for their "up till dawn" Zoe's Hero's Dave Kromphardt's daughter, is putting it together so we will be among friends again. The 11th we are shooting photos for ALSAC/ST Jude in Peoria.
Please continue to keep all of our dear friends battling this monster in your prayers and the parents who have seen their babies off to play in heaven-words can not discribe their pain. Below are some websites-please let the parents know their babies are not forgotten.
1)www.caringbridge.org/mi/shanerezmer
2)www.loveforlou.com
3)www.caringbridge.org/il/aarondhunter
4)www.caringbridge.org/la/stanton
5)www.caringbridge.org/va/trey
6)www.caringbridge.org/la/zoie
These are the since December and only the ones in our memory-if I listed all this site would be full.
We love you.
Monday, February 7, 2005 7:09 AM CST Sunday, Feb 13, 2005-Dear, Darling Stanton won his battle today and is dancing in the streets of Heaven- please let his family know you are thinking about him
What can I say-so many of our dear friends need prayer-Stanton (www.caringbridge.org/la/stanton) has been sent back to Target House with Hospice. Tina, Jeff and Stanton were 3 doors down from us at RMH and Jeff and Elmer were "chemo/medroom" Dad's together. Our hearts are breaking for them. Please, Pray for a peaceful and painfree homecoming for Stanton.
Emmagrace (www.caringbridge.org/ar/emmagrace) is still on fourth floor at the "Jude". We know that they need prayer for Emmagrace to recover and move out of what they call the "penthouse".
Zoe has been sick for two weeks and out of school for 6 days. She returns tomorrow. She had the cold, upper chest, stomach and swollen glands. Her groin was hurting and according to Dr. Twano she had some swelling. He now tells us that it has gone down a bit.."more like a smal piece of grain than a pea." Her right eye is drooping but said it was normal-although everyone has commented on it. We will be glad to get the test in Memphis done so we can rest easier.
She is having her 6th birthday party this Saturday. A week early but instead of presents she is filling a chest for St Jude, as she has it all she says. Today, she even said when asked if the presents should be wrapped, "no kids are too sick to unwrap sometimes." Too much knowledge at 6.
Please hug your children and keep them close-bless those parents who have sent their babies to heaven and those who are about too.
We love you...
Thursday, January 13, 2005 4:06 PM CST It has been a great year so far. Zoe, while not feeling the best, has returned to school and life as we know it. She is very tired, complaining of back pain and having other issues. We are hoping that it is all part of going to school but will be glad to have our visit to Memphis next month. We ask that you keep her in your prayers and that all the scans are good.
Lexi passed on at the end of December. I have to tell you, it was so hard to go to the wake and keep our wits about us. It was one to many of our children lost in a short period. When you read the caringbridge pages, it is like these children become part of you. It does not matter whether you have ever heard their voice or met them-you know them and their caregivers, and every time one loses the battle, you lose a part of you. Lexi- was someone that we had been with and heard, and held and it was so hard-maybe harder, just like Aaron. Trey and Shane were almost like family. Their parents have been in contact, I have spoke to the grandparents and well, when they pass you just grieve. December was just like that, a grieving month.
Our friend Stanton in Memphis (www.caringbridge.org/la/stanton) had his scans last week and he is still full of neruoblastoma cells. Please keep him in your prayers.
Our friend, Lenee, has been hospitalize since just after Christmas from effects of the chemo. Please stop by and let her know we are here for her. See link below.
Take care of yourselves and each other.
We love you.
Tuesday, December 28, 2004 2:58 PM CST Hope your Christmas was a happy one. We may need to move out to just get in another gift.
Zoe has the croup and is running a fever with it. We took her in yesterday and Dr. started meds. She has a deep cough, is quite testy when awake and is very tired most of the time.
TREY completed his journey. We ask that you pray for peace for his family.
Lexi is very close to the end of her journey. How very sad this is for all of us. Lexi and Deb have been at clinic forever and Deb is a Michigan fan too. It has been struggle-transplant and all. Lexi's page is luvforlou.com
So many of our dear friends are losing the battle. I am so afraid to check webpages anymore. It is so very unfair and I just can not understand why. I know that I am not suppose to question but I do. Where is the fairness when child molesters, killers, and so many more awful terrible people are let to roam this earth contributing nothing! These dear children have a future to contribute more but I am told that God must have a plan and I am trying hard to believe that.
Once again, a child we have held in our arms, ate dinner with, played at clinc with is gone and other is going and a family is devestated. It makes me so angry!!
Our friend Lenee has set up a webpage- www.caringbridge.org/il/leneesmoode
Please let her know that the caringbridge family is out there for her.
We wish you peace and prosperity in the NEW YEAR.
We love you.
Candyce, Elmer, Zoe, Sarah and all the Angels and Heros among us.
Monday, December 6, 2004 2:51 PM CST Hello-
Once again, I am so slow in journaling. I am sorry.
Shane lost his his battle last week. It was hearbreaking but I have never knew a person more determined than Shane. He fought this for 10 years and was a real hero to many.
(www.caringbridge.org/mi/shanerezmer)
Zoe is fine and still a pistol. We do not know if is the illness or the fact that she is in school and exposed to so much-who knows. She has a speaking part in the school program and is excited to be a "star". Her health is holding stable and we are so glad. She does catch whatever goes around.
We are preparing for Christmas and she wants a million things including more trees. Aunt Vicky has 3 and she wants 3-too bad! One is enough.
Trey is still battling www.caringbridge.org/va/trey-he needs our prayers.
Lenee still needs our prayers-Her cancer is a very rare (only 8 cases known). Please send up many many prayers.
We went to the benefit for Nathan Applebee yesterday in Oglesby. It was wonderful-please keep him in your prayers.
Aaron, dear sweet Aaron, is entering the final stage of his journey. We are so blessed to have know Aaron and his family and brothers need your prayers-www.caringbridge.org/il/aarondhunter.
WE LOVE YOU!!!
Thursday, November 25, 2004 12:36 AM CST FIRST-HAPPY THANKSGIVING-We have so much to be thankful for beginning with Zoe being able to participate fully in our lives.
SECOND-PLEASE STOP READING AND SEND UP PRAYER FOR 4 DEAR YOUNG MEN-
TREY (LINK BELOW)
AARON (LINK BELOW)
SHANE, MY DEAR, UofM BUDDY(www.caringbridge.org/mi/shanerezmer)
NATHAN-RECENTLY DIAGNOISED WITH MEDDULABASTOMA (I KNOW THAT THE SPELLING IS NOT RIGHT) ODDS ARE VERY LOW AND HE IS FROM OUR IMMEDIATE AREA.
All three are hanging on but are in need of immediate prayer. Please ask our Lord to grant them peace and make them painfree. Their whole families are in need of prayer to be able to function during this time.
Zoe is still doing great. Yesterday, she enjoyed the first snowfall of the year. There is a darling snowman she and Trev made in the yard and of course, many snowballs were thrown.
We have heard nothing about her test from Memphis so we are assuming that the bone marrow was clean. THANK GOD! She looks and feels great.
Last week-end she was the flower girl in Jason and Jeni's wedding. She had a ball and was very serious and did a good job. She loved the dollar dance and in fact, all the dancing. I can't wait to post the pictures.
She has been making quite a Christmas list and I keep reminding her that she must be good-for the most part she is but whoa-somedays....
Please count your blessings today-I know that I am.
We love you.
Friday, November 12, 2004 8:21 PM CST NOTE: November 17-2004/ STOP AND PRAY NOW FOR TREY! News is not good and they need prayer!!!!!!
Arrived home from Memphis last night. It was good to get back to our own beds, but the trip was great.
So far all reports are that Zoe is still in remission. Her bone scan was good, the blood and urine good, but the bone marrow and MRI are not back yet. NO MIBG-as once again the medicine was not able to be used.
Zoe had several "sticks" during the three days we were there. Everytime they thought that the IV could stay in overnight something went wrong,including the night I forgot to unclamp and it blew out, and another when the needle came out of the vein. We were so so proud of her and by the fourth stick, she cried but not too bad.
We had a great time with my sister, Joyce. It was nice to have another adult along and we did some fun things and got some power shopping done.
We also had a chance to connect and have dinner with Donna and Garret from Peoria. He looks awesome and we enjoyed our dinner out with them and the trolly ride.
Stanton and Emmagrace look so good and are both set to Transplant. EmmaGrace in early December. We also spent some time with new families. It was so different to see the new faces and hard to remember the ones we lost.
Please keep our ZOE ANGEL, Lenae in prayer as she was just diagnoised with cancer. She is a single mom and needs lots of prayers.
Thanks again for all your well wishes! We know that prayer is why Zoe is alive.
We love you.
Tuesday, November 2, 2004 5:14 PM CST Hope all is well with everyone. We are freezing here and sick of the rain.
Zoe, my sister, Joyce and I are headed to Memphis this week-end for a week of testing. Please pray that everything will be clean and Zoe continues in remission.
She has had a great month. She was just darling as a clown for Halloween and had fun at her party. She was sick last year and she did not make it thru the night trick or treating but this year she hauled it in!
She is doing well in school and enjoys it all. The girls are so busy with scouts and such. I am so glad that she is able to participate.
Medcically-she has caught everything that has come thru the school and home. She has had many blood draws and sure misses her line at those moments. Every one else is amazed at how well she looks.
This morning when we went to vote-she kept saying "yea-we are voting for John Kerry." We told her that she could not do that at the polls but she did not care and when we left-she told everyone as we were leaving the same thing. She was mighty popular with some esp. since we live in a Democratic hotbed! She proudly displayed her "I voted" sticker. Guess we talk polictics way too much.
We are recovering from the fire and are up and running. It is not a "forever" home and we know it will be 6-8 months before we have one;but we are so blessed to have the support that has been out there for us.
Please pray for good results for Zoe Jo and all the other children that are facing the fight of their lives!
We love you!!
Sunday, October 10, 2004 9:40 AM CDT Where oh where do I begin? Zoe has been coughing and choking since last week. She had had a bout with the crud earlier and has been pale and dark circles under her eyes. The first thing we did was, of course, take her to the Doctor. It was almost like BC (before cancer). It was the "crud" sinus and such. She was placed on zyrtec. It did not help. The cough got steadly worse. Another visit-"give it a chance." Then these last few days she could hardly stop coughing with med's so last night I took her to the local ER and this Dr said "pneumonia." So-they did a blood count and x-ray. The Dr' said a problem with right lung and put her on an antibiotic. I called St Jude and they said get her the flu shots at clinic. We are a bit nervous and can't wait for a check-up with Dr' Santana-scheduled for Nov. 8. It seems like she has not been well for awhile although she was clean in August. DO all cancer parents get so nervous over these kinds of things?
Zoe has been doing several St Jude apperances including the style show in Peoria and a talk at Delta Delta Delta at Eastern Illinois Univeristy. She has seen her "Mike" MCCoy and Mr Mayor, Jim Maloof and given lots of Hugs and kisses. She loves School and is enjoying CCD and Daisy scouts.
Our live has been hectic since the night of our speech at Eastern. We arrived home at 1am and an hour later recieved a phone call from the local PD that our business was buring to the ground. Along with our for profit business, the social service agency ( I am the director) which included a food pantry and 32 other programs went up also.
It has been a rough week but the kindness of communities far and wide has been overwhelming. We will re-open the food pantry tomorrow and continue to run the other programs as well. Thanks to all of the friends and family who have been so supportive this week.
My sister and her husband plus 2 grandchildren are here this week-end and we are enjoying their vist. Zoe loves having her cousins here. It has been a nice break from our current problems.
AAron Hunter, our friends from Peoria, has decided to stop
treatment. His webpage is listed below. Emmagrace is returning to St Jude tomorrow from her second round of treatment in Philly, Stanton is doing much better but oh there are so many who are not. Please keep all these children in prayer and the others who are fighting for their lives against childhood cancer.
Ladies-it is Breast Cancer Awareness month-get those mammograms!!!!!!!
We love you!
Wednesday, September 22, 2004 5:40 PM CDT I know, I know, I need to update more. Zoe is wonderful and having a great month. School is good and she has been very good. Knowing how Zoe can turn into little stinker, we feel very blessed with the school situation.
The last soccer game was played last week and she is ready to start again. She did not have much stamina but she loved her coach. Jennifer was just wonderful with her.
Zoe has made a lot of new friends and has been on some play dates. She has joined Daisy Scouts and is VERY excited.
She is still struggling with a cough and backaches but it is on going and nothing new. Her counts remain stable and so does her urine. Thank God!
The last week has been busy with St. Jude apperances. Monday, we were at Zurich International to tell our story and have lunch. It was a wonderful experience. Those wonderful people love St Jude and we loved being there. It was an awesome experience.
We also did a St. Jude apperance at Chili's. They donated all of their profits from all their stores to St Jude that day. A big thanks to Morris, Chili's and the radio staion for a lovely meal. Also to Bobbi and Cj, Codi and Hunter plus the Barbers for coming all the way to support St. Jude.
Next week-she models for St Jude at the Hotel Pere Marquette in Peoria. The annual style show to benefit St Jude is sponsored in part by Bergner's.
Let me tell you-She is loving the attention. Tickets are 45.00. Call me if you need them.
GOD IS GREAT: Emmagrace (Happy Birthday, sweetie) www.caringbridge.org/ar/emmagrace and Stanton, www.caringbridge.org/la/stanton, have had some great news recently. They both relapsed and are doing well.
Please keep Aaron in prayer as well as all our St Jude kids. God Love them!
We are headed back to Memphis on Nov 8 to start a week worth of test. Please pray for clean results.
Zoe's fight is on going and we are so thankful for all your support. Take a long look at our fighter's pictures-God's Work is evident!
We love you.
Monday, August 23, 2004 5:41 PM CDT Zoe is crusin' along setting milestones in her life. There have been so many first this last month. We belive that is due to the many prayers that have lifted Zoe up since the nightmare began in December 13, 2002.
Miss Zoe, decked out in orange, played her first soccer game this last Saturday. She ran and tried to kick and had a blast. You could tell that she tired easily but wanted to do it. She and cousin, Cade play on the same team and so we cheered both of them on from the sidelines. It was so hard to keep back the tears when we realized we never thought this would be a possibility-esp with a 30hance of survival!
Zoe's famous wit came into play last Wednesday, when we attended Kindergarten Orientation. Zoe was very excited and took her seat at her table. She did well until one of the other kids at her table did something wrong. Zoe then became a "tattletale." We were embarrased but Mrs White handled those incidents, but then we went to the restroom, a girl said hi and Zoe in turn replied. The child later said "You need to talk louder." Zoe then said. "DUH! I have nueroblastoma and my throat (where the tumor was) can't!" So VERY Zoe.
When she went to school today-It was emotional-she is alive, and NED and we can only praise the Lord! She tried to leave with me but stayed with coaxing.
So many of our friends are battling this monster and need prayers, Mallary (Clean SCANS!), Aaron,Trey, Shane, Emmagrace, Stanton and the list goes on. Little Hannah lost her battle last week as did Alex. Please remember these dear friends in prayer and the many others who are in our ranks.
We love you!
Tuesday, August 10, 2004 3:04 PM CDT I am sorry it has been so long since an update. It has been a busy,busy couple of weeks.
Zoe is in Memphis with Elmer and Corey VanSchaick.
Yesterday she had bone marrow aspirations and today, scans. Her blood work and urine were clean. Elmer said that Dr. Santana said she looks great. They should be home tomorrow, Thank God. A big Thank You to Corey for taking time off from work and out of his summer to go to the "Jude" with Elmer. I was disappointed that I did not get to go but next time, Vicky and I are going! She wants to see Zoe's Big Hospital. Please pray that remaining test show nothing-zilch-nada, etc.
We had a huge week-end before she left.
Friday, several of Zoe's Hero's and Angels had a team for Relay of Life. It was awesome!!! Uncle Brian Knutson won "Miss Relay". Yes-MISS, so you know there was some cross-dressing going on! The survivors Lap, Zoe chose to take her Hero's on the walk with her. For us, there was not a dry eye-when she said "Zoe age 5, 18 month survivor". I thought that last year she had just had a transplant and was so weak. We had just lost my mom and we were all so sad. What a difference a year makes! Praise God and St Jude! Her little friend, Mallary was there and it was so good to see them!
Saturday, it was the St Jude Run to Peoria! We left the house at 5:30am with Aunt Bobbi and Uncle Cj. We met the runners at the mall and they took off for Peoria. We worked at a local store to raise money. It was wonderful! She was so well-known from the press stories. People just loved her. Later we met up with the runners in Chillicothe and followed them to the telethon in Peoria. Zoe, Trev, Uncle CJ, Dave Kromphardt, the Dhesses, and others ran the last mile to the Civic Center with the group. Words can never describe the emotion of seeing all the runners from all over the country arrive in Peoria. So many of our children who are in treatment,their families, loved ones who's children have become angels-the emotion can not even be described. Jess, our favorite nurse from Memphis ran-unbeknown to us! Oh my Lord-we were floored and were just overwhelmed to see her. What a women! Megan Mautino, wheelchair bound, led the runners from Springfield, in her brother, Alex memory. Her mom, running beside her. Sarah Johnson, so beautiful, Sandy & Stan Valentine, who lost Laura in January-Dave Fervert and David, Lisa and Kelsey, Lisa and Lexi. I could go on and on! We worked the phones and Zoe and Trev were on stage-Belive me when I say, if you have never been involved- DO IT! I will say the love in that room is so incredible-we all share so much! THANK YOU to all that supported our efforts! By the way, a picture taken of Zoe and Lexi last year-holding hands, back to the camera, caption "sharing dreams". Was the symbol this year-note cards have been made of it, posters and other things and we are just so warmed by it. This year, both girls, bald last year, are sporting lots of healthy hair!
It goes without saying, that we are praying for clean scans so when she arrives home she can start kindergarden and play soccer and be a normal 5 year old. We will forever be warmed and blessed by the memories of this last 18 months. We hope Zoe will continue to be remission and we ask, no beg, you all to pray for the children who are sick, for the children losing their battle and for those who are waging the war against this monster called Childhood Cancer.
We love you!
Tuesday, July 20, 2004 11:20 AM CDT We are back from a wonderful vacation that was filled with adventure, from seeing 5 black bear, to boating and fishing and just relaxing. The weather was a lot cooler than Illinois but the bugs-all biting were worse.
We shared our vacation with Uncle CJ and Aunt Bobbi. We are not sure that they had a lot of rest (4 kids, 3 under 6) but we enjoyed having them.
Zoe looks great and swam in 2 great lakes, a pool and 2 inland lakes-she loved the boating and everything. it is so hard to believe a year-ago we were in isolation in Memphis. Praise GOD!!
She was totally unimpressed about having her picture in People. She is doing an interview today and she is more excited about that-who knows what these kids think.
Bobbi, Zoe and I are participting in the St Jude telethon that is August 7. We will be answering phones. We need to raise 2000.00 -if you can contribute, PLEASE help us. You can make the check out to St Jude and mail it to the address below. Thank You.
My dad has had a change in diagnoise. He has what mimics Alzheimer's-What is Multi-Infarct Dementia? Here is a bit ahout it.
Multi-infarct dementia (MID), a common cause of dementia in the elderly, occurs when blood clots block small blood vessels in the brain and destroy brain tissue. Probable risk factors are high blood pressure and advanced age. CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is an inherited form of MID. This disease can cause stroke, dementia, migraine-like headaches, and psychiatric disturbances. Symptoms of MID, which often develop in a stepwise manner, include confusion, problems with recent memory, wandering or getting lost in familiar places, loss of bladder or bowel control (incontinence), emotional problems such as laughing or crying inappropriately, difficulty following instructions, and problems handling money. Usually the damage is so slight that the change is noticeable only as a series of small steps. However over time, as more small vessels are blocked, there is a gradual mental decline. MID, which typically begins between the ages of 60 and 75, affects men more often than women.
Is there any treatment?
Currently there is no treatment for MID that can reverse the damage that has already occurred. Treatment focuses on prevention of additional brain damage by controlling high blood pressure.
What is the prognosis?
Prognosis for patients with MID is generally poor. Individuals with the disease may improve for short periods of time, then decline again. Early treatment and management of blood pressure may prevent further progression of the disorder.
Because of this-we can not leave him alone-so Elmer and Corey will be taking Zoe back to St Jude for a complete realm of test beginning on August 8 and continuing until the 12. Please pray that she is clean and continues in remission. I have to say - I really felt like I needed to go but obviously with my Dad, I can't. I am feeling very "leftout". Oh well-It is not about me.
Please keep all of our St Jude family in prayer. It has been a rough summer for so many. Most of all, keep all cancer kids and their families in prayer-while not all are treated at St Jude-their issues are the same as ours.
We love you!
Sunday, July 11, 2004 9:13p NOTE: On Saturday, July 10 at 11:10 am-Our darling friend, Zoie earned her wings. Please visit her site at www.caringbridge.org/la/zoie and let her parents know you care.
Thank you Jeff and Tina for calling and letting us know. Thank you for being there for Zoie and her family.
Zoe AND her angel, Sadie are in PEOPLE this week for a story on Chemoangels. So is our other friends the Valentines. Laura lost her battle in Jan.
TOO many lives being lost to this monster!b Donate to St Jude and others who are fighting for these kids. Believe me-It is a matter of LIFE OR DEATH!
We love you.
Wednesday, June 23, 2004 10:17 PM CDT Hello-
We are one year post-transplant and Zoe is a happy healthy child, NED status, and we are enjoying the summer.
Zoe has been swimming and playing outside. She is counting the days until we leave for our vacation and is very excited about kindergarden!
My Dad has been diagnoised with Alzheimers and is living with us. It is a diffcult situation at times but he is my
father and we will handle this with the grace of the Lord. Please keep him in prayer.
This week-end she is participating in a Relay for Life and then the St Jude Run. We are seeking doantions for our required 1000.00 particiaption fee. Please if you can help-mail it to our home address and made out to St Jude. Thanks.
While we are enjoying being NED- many of our friends are not. Please keep Trey, Zoie, Stanton, Aaron, EmmaGrace, Mallary, Travis, Shane and so many others in prayer-but for the Grace of God ....
And remember-We LOVE YOU!
Friday, June 4, 2004 2:42 PM CDT It has been a great time since we have returned home. Of course everyone is elated by our awesome news and we are so glad to have that line gone. Funny thing is we were so glad to have to free time but have filled those hours so nicely.
After arriving home I received a phone call that my Dad was worse and I needed to bring him here. My nephew and I went to get him and got home about 1am. We have been doing dr's and test all week. Looks like Alzheimers, but we are not sure. Therefore, our time has been spent with Elmer and our friend, CJ, building a second room in our basement for Sarah. We have moved my dad into Sarah's room upstairs. Please lift this up in prayer.
What a change a year can bring-last year Elmer was in Memphis for the twins, Cade and Tesah's birthday-this year he was in the pool with them and so was ZOE!!! She was so excited-ran and jumped and loved it. It was like she had never left the water. It was very moving when she jumped in even the boys, Alex and Trev, age 8 -realized that a miracle had taken place in our lives. We are so thankful for this chance to have Zoe in remission and doing normal kid things.
Please keep all our wonderful St Jude families, the Hamptons, the Hunters, Zoie, Travis and Chasity, Carol and Tori, The Hanes, so many more in your prayers. We so miss them and think of them and their battle each day. God Bless you all-we love you.
Alex Mautio lost his battle with a lung fungus last week. This 14 year old had fought cancer and another gentic disorder all this live. His family is remarkable and I know they need us to lift them up in prayer along with Trey, Shane, Morgan, Mallary and so many more.
Amanda Kromphardt is travling to St Jude this week-end for a tour and other things. She has been so involved in the St Jude Run and UP ALL NIGHT at NIU. We are so glad she and her friends were invited to visit the hospital. I know they will take away the same sense of wonderment and awe that we do everytime we go. God Bless these young people as they travel to Memphis.
Enjoy life, love your children, cherish your friends and each other-we love you.
Thursday, May 27, 2004 11:30 AM CDT Fill the pool with chemicals and watch out Lake Michigan-Zoe is STILL IN REMISSION AND LINE FREE!!!!!!!!!!
SING PRAISES TO HIS NAME!!!!!! Thanks to the mighty and plentiful prayers that went out-we were informed about 1 hour ago that the spots were most likely a shadow or what we suspect (due to racing stripes) she was again holding her feces. Who cares? Thank You-Lord.
It was a long and sleepless night-with many tears and over-eating (there goes my diet) plus stressed arguments. We wanted to scream at times-so we indulged my favorite pasttime, bookstores and got the kids ice cream. Elmer was once again the pessimist and I was the leary optimist. I just hide it better or not
So many people called and e-mailed-Thank You. It was so comforting. Jeff and Tina-with all you are going thru the call meant so much-we love you! Chasity and Travis-thanks for the support, our thoughts and prayers are with you in this diffcult time. We love you. Our dear wonderful family and friends-Thank You!!!!!!!! We could not do this with out you.
We head back in August and we will continue to pray for continued remission.
LOVE YOU!
Wednesday, May 26, 2004 12:08 AM CDT We just wanted leave a quick note and ask for immediate prayer as two spot were found on the MIBG test today. Dr Santana ask us to come in and told us. He did say that the neck MRI was fine and the blood work was good but the stomach/pelvic area was not. He then scheduled an immediate CAT and look see of this area at 4pm today. We will not get the results until tomorrow at 10:30. Please pray for this to be nothing. I ask if it could be scar tissue from the g-tube but then he wondered why it would not have shown up on the three other MIBG's that had been done after the tube was removed last Feb. since she has had many other test in the last year.
Also, Chasity and Travis have told us it is just a matter of time for their Zoe. Please keep this family in prayer and if you see fit-please send a donation of money or phone cards or even wal-mart or target cards to Zoie's family. For address-please see their web site at caringbridge.org/la/zoie. or contact me.
If all goes well-we will get her lines out at 11:00am tomorrow - if not we will be going home for a brief stay.
We love you and will post ASAP after we know.
PRAY!!!
We love you.
Wednesday, May 19, 2004 10:26 PM CDT Just a quick (HA) note to let you all know we are headed for Memphis on Saturday for 5-7 days. Mostly, testing and hopefully having her line removed.
Zoe so wants to swim in Aunt Vicky and Uncle Brian's new pool, so we hope to share good news with you next week. Please pray for clear test results.
Zoe has had a wonderful week. She spent Saturday at Rave's birthday party. Rave recieved Libby LU Glitter from us as I always like other Mom's to have the same fun I do with this stuff! Well-the joke was on me as Staisha let the girls play with it while Zoe was there. After several baths and repeated hair washing-we still see body glitter in her hair.
Sunday, her Daddy took her to Santa's village with Rave's family. She had a blast! Was too busy to see Santa while there (or scared of the naughty or nice list-I feel this could be the REAL reason) but rode all the rides and came home exhausted!
All week she has ate like a little piggy and been loving the warm weather. She is very excited about the trip to Memphis! I think she thinks if the lines come out Thursday-we can swim on Friday! NOT!
We have so many prayer request but the most urgent is for our extended "Jude" families.
Travis and Chasity(www.caringbridge.org/la/zoie) found out that their child has more cancer and is waging a battle for her life. PLEASE SEND UP A PRAYER NOW! let them you know you care and leave a message for them.
Staton (www.caringbridge.org/la/staton) needs prayer as does his family. Staton has relapsed and is starting another round of chemo and radiation.
EmmaGrace is awaiting placement in PA-visit this beauty at www.caringbridge.org/ak/emmagrace. Her Momma and Daddy are just the best!
Shane (www.caringbridge.org/mi/shane) needs prayer and support! I feel that this wolverine fan is a soul mate and he has battled for at least 9 years. This is his senior year-pray the next few weeks ones he can enjoy.
Trey who's link is below continues to need prayer-Please visit his site.
I would also ask for prayer for my father who is still having such a hard time with my Mother's passing. He is very depressed and the whole family is concerned.
I could fill up two more pages but I will ask that you visit these children's pages and read the guestbooks, share the tears and then visit more caringbridge sites.
You have no idea how the messages warm our hearts and let us know that we are not alone. This journey is filled with anguish and pain but we are also blessed by your thoughts and prayers. Please leave Zoe a message today!
Praises: Zoe is doing great and is in remission. We are fully aware of how that can change. We thank God everyday!
The laptop will be with us in Memphis so e-mail or leave a message-we will update midweek.
We love you.
Friday, May 7, 2004 5:35 PM CDT Words will never be able to express the happiness and the joy given to Zoe on her make a wish trip to Chicago. It was so amazing and Elmer and I had the time of our live-it was truly a dream come true.
Tuesday, a stretch limo pulled up at 12:15 and transported us to the Fairmont Hotel in Chicago. As we arrived, we were greeted by the excutive staff and welcomed. Zoe was led in to the hotel where the Chicago ballet troupe greeted her in full costume and gave her 2 dozen pink roses!
The entire staffed lined the halls and each said hello and welcome. We were led to a corner suite and when the doors of our 3 room plus 2 bath suite opened, there were pink ballons tied everywhere. It was magical.
The closets had ballet clothes, the table had a spun sugar ballerina centerpiece, made by the pastry chef for Zoe. Her room (HUGE) had ballerina figurines, more ballet clothes, a true tiara plus other ballerina trinkets.
The living area (bigger than our living room-which is big) had all Angelina Ballerina things, plus childrens songs in french CD, a video on teaching the ballet "The Nutcracker"plus books and so much more for Miss Zoe to keep and enjoy.
The Chicago Ballet troupe stayed and danced with her and posed for pictures. Zoe showed them her moves and was sad they needed to go.
After changing we went to Navy Pier and the Childrens Museum. We had an awesome dinner at Bubba Gumps. There she received numerous gifts and of course, wonderful serivce.
The next morning, after a wonderful breakfast at the ARIA, we walked State St. and shopped and Zoe received many wonderful gifts at Libby Lu's, the Body Shop, and the Children's place. Then it was Joffery time.
We were transported in a long sleek limo to the stage door. Harriet, the Joffery's artistic director, led us to seats but Zoe went back stage and watched them dance in full costume and then Zoe came out in her tutu and presented flowers to the cast and the prima ballerina. It was the first time in Joffery history that had been allowed by a non-union person. The Joffery Ballet Director greeted her and said "she is a natural and should be in my company in a few years." Zoe was so very happy. I can not tell you the joy in her eyes.
Our wish granters-Bill and Kim, joined us for a dinner at the Aria-about 1 $500.00 dinner, given by the Aria and the Fairmont hotel. Zoe brought down the house when she wanted "Creme Brule" and she got it. It was so wonderful!!
Zoe learned quickly that she liked to be waited on. When she spilled juice in the ARIA, she wanted to know where the "servant" was to clean up. She got a present from the concierge when she spilled, just to make her feel better, when I dropped her coat, she got a stuffed bear, when she stepped outside, she was give top piority, so she never waited for a cab. As we were leaving, she asked if we could take the "servants" home. She esp. liked having the bed turned down and music turned on at night by the maid.
The American Girl doll store hosted us on Thursday at we got outfits to match for her and her doll and a host of other items.
All I can say is it was a good thing we had an extra long limo to take us home. WOW!! She will never ever forget this.
A HUGE thanks to Dana and the entire Fairmont and ARIA staff, the Chicago Ballet, the esteemed Joffery Ballet, Navy Pier, Bubba Gump's, the Children's Museum and the MAKE A WISH foundation. Plus so many more.
While we were enjoying, so many of our friends at St Jude and around the world were still suffering, please keep them in your prayers. Please, Please remember TREY as his pain is so bad and keep the caregivers and extended families of all our children in your prayers, if you are not walking or taking part in this journey you can not imagine how hard it is.
We LOVE you! Happy Mother's Day!
Wednesday, April 28, 2004 6:03 PM CDT Welcome to Spring! At least in Illinois where weather has been so nice the last few days.
Tuesday, May 4, at noon a Limo will pick us up and transport to the Fairmont Hotel in Chicago for 3 fun-filled days in Chicago. All compliments of the Make A Wish Foundation. We will be visiting the American Girl store and we will have tea. Zoe and her doll will be getting matching outfits.
Wednesday, May 5, we will shop in Chicago and attend the Joffery Ballet where Zoe will present flowers to the Prima Ballerina. Our wish granters, Bill and Kim, will accompany us in the Limo to the nights preformance. Later, we will have dinner
Thursday, May 6, we will take in the sites and head home.
I have to tell you, Zoe is so excited. We are, too. Three days in a beautiful hotel and all expenses paid.
My nephew, Michael, arrived on Sunday, to live and attend college. So far the kids have had a blast. Mike is an only child of a single mom, so he is learning the ropes of being in a large, and loud family. He has made friends and Zoe is very adoring of him.
We ask that you keep Brock and Jess in your prayers, as baby Aiden, lost his battle Saturday morning. We have felt so bad for this young couple who struggled to have this child, only to have him come early and leave them in 6 weeks.
Also remember, Trey and pray that his pain will be lifted, Aaron as he heads to transplant, Emmagrace and Stanton as they start the relapse chemo programs and all the other children suffering tonight.
Have a wonderful week and we will update after the Make A Wish trip.
We love you.
Sunday, April 18, 2004 1:47 PM CDT Hope all of you have had a wonderful week. Zoe has been enjoying remission and being able to act like a normal kid. Not that she did not before but WE are a bit more relaxed.
The other kids were out of school this week so we had 3 sleepovers and several outings. We had just beautiful weather that it was hard to stay in. All 3 of our five year olds (Zoe, Tesah and Cade) got a firm "tap" and talk to when they decided that they did not have to wait for an adult to be outside and took off down the alley to a bigger and better swingset. Needless to say, they were not allowed outside the rest of the day.
We went to Brock and Jess's benefit and they had such a nice time and turn out. There were pictures of baby Aiden everywhere. You can not imagine how small a 1.8 lb baby is until you see it in a picture and it looks like a small kewpie doll. Please keep him in your prayers.
Friday it was St Jude day at Morton High School where David, Zoe's love, attends. Tesah, Bobbi,Zoe and I went to represent St Jude and it was AWESOME! All the school participated and what a wonderful group of young adults.
There were tables where you could buy everything from Soda to kisses. Food from all the best diners and cafes. They had shirts and activities galore. All the cancer kids and their guest recieved a free bear that the classes bought thru a build a bear type booth. We also created one for Mallary and Aunt Sarah. I can not say enough about the faculty and staff who helped this event-it was one of best events I have ever participated in.
We also saw Ginny and Kristen, Warren and Family, and Brad-
everyone in remission. It was just the best.
We also stopped by the Midwest Affliate in Peoria and saw the nurses, staff, Val, Shelley and Loretta! I so needed to see this group of dedicated people who have been by our side for this fight. It had been months. You all look so GOOD!
Today, Trev made his first communion. Zoe was as good as gold and attended several parties afterward where she ate so much she had a headache. Seems so hard to believe that Trev is old enough to be doing this. He has turned in to quite a young man. He recieved Corey's junior golf set yesterday and spent much of our little party (to honor him) having Cade "caddy" for him. What a hoot!
Sing Praises to his name-Trey is home and doing good. The results were not as grim as expected-please visit his website listed below. Aaron is also doing well. Mallary also came thru surgery well and it looks like the tumor died during chemo.
Prayer request: last year we transplanted with 6 children as of April 15-we are the only ones not in relapse. Staton (www.caringbridge.org/la/staton) has been in put in relapse with a tumor behind his eye. Please pray for him. I will ask that you remember all the children in your prayers tonight. Remember how lucky you are if your child is healthy AND that we live in a country we can stop and pray at any time for these kids.
We love you.
Tuesday, April 13, 2004 6:29 PM CDT We hope everyones Easter was wonderful. Of course, with the word remission now in our vocabulary-ours was the best ever.
Zoe had a great day. She went to Mass and was as good as gold. She particpated in the Easter Egg Hunt held at the Church and loved every minute. Her cousins and 1/2 brother, Austin were here and they were joined by the VanSchaick kids later in the day. She played and had a blast. She has told everyone that her cancer is in remission (she says sleeping). She was thrilled to get a new bathing suit from the Easter Bunny. We just know that those lines are coming out!
Great-grandpa Marland is here and he gave us a scare yesterday with sudden pain on his left side and nauseau that stopped the car several times. Zoe and Trev were in the back seat and they were so good. When we got to the hospital ER, Eight year old Trev took control and got Zoe to the waiting room and told her to be good while we got a hold of his mom (Aunt Brandy). He watched and played with her while I handled my Dad's insurance etc. They both were perfect. Seems a kidney stone had started to pass and it was extremly painful. Dad is feeling much better today and is just resting.
Today, Zoe, Trev, and I went to the "Captured for St Jude" at Red Lobster. Vicky and her kids came right after us, so we had a nice lunch. Then the kids dropped off a donation. We had a great time and Thanked the people talking to others about St Jude and Zoe. We also saw Alicia and Dane from ALSAC. It was great and we saw lots of cash and checks coming in! Thanks to All who particiapted.
Friday, we are going to Morton for another St Jude event. St Jude week at Morton High School where Zoe's love and fiance, David attends school. We are so looking forward to it.
PLEASE PLEASE-Trey needs your prayers as does his family. What a terrible ordeal this adorable 5-year old is suffering thru with Neuroblastoma. We asked prayer for him at our Easter dinner while thanking God for Zoe's remission. His link is below.
Aaron is also in hospital and needs prayer. Link below.
Mallary(link below and it is working)is having surgery in Friday to determine what a black spot where her kidney was removed is. Please keep this in your prayers that Mal is safe and can start radiation.
Some of you may remember the wondeful newspaper report, Brock Cooper, who wrote all the wonderful pieces on Zoe and his wife, Jess, who babysat for Zoe. Their long awaited baby was born 3 months early and is in NNICU in Peoria. Baby Aiden needs much prayer and Jess and Brock need help. Please consider a donation to the "Baby Aiden Fund" c/o Newstribune, 2nd St, LaSalle, IL 61301. THANK YOU SO MUCH!
Praises to His Name: EmmaGrace has gone home for a breather and Dr Santana thinks her elbow tumor has shrunk. YES! www.caringbridge.org/ak/emmagrace
Once again, our journey has been bearable because of all of you. We know it is not over, but a year ago when I started this page, I did not know how many people who read it and help us so much with their kind words. We thank you for your prayers and love and know-we will always be thankful.
We Love you.
Wednesday, April 7, 2004 1:57 PM CDT GOOD NEWS: We are in Remission! There is no active cancer at this point in Miss Zoe. Her test from California came back clean. Sing Praises to his name! We got the call about 1:45pm today. I told them I did not want to hear bad news in May as we can just booked a week in the UP of Michgan. Zoe wants to go to the beach and SWIM!!
While we are clean now-we know that this type cancer is not one to lay dormant long and relapse is still an 80% chance. We are choosing to live in the moment.
Zoe was excited but only concerned that her lines come out "are we going back to our BIG hospital, now?" . I assured her that is exactly what we hoped to do but in May. Please be in prayer that she is still clean in May. If she is the party is on us and we are throwing a HUGE "I got my lines out" bash.
I want to let the locals know that on April 13 at the Red Lobster in Peru they are doing a Jail and Bail for St Jude. We are going to be there and hope to see some people out to help raise money.
Prayers are needed for some very important people in our live- 1) my brother in law, Darell as he goes in for a heart test. Some of you remember that he had open heart surgery about 11 months ago and there seems to be another problem 2) our dear friend, Jim Smoode, who is in ICU with congestive heart failure and 3) our dear St Jude family, the Hamptons- Emma Grace has relapsed and is back at St Jude(www.caringbridge.org/ak/emmagrace) 5) Trey (link below) who is so in pain 6) all cancer kids who are fighting for their lives. 7) Baby Travis who is headed back to Memphis for more chemo.
Praises to his name-Aaron has seen a decrease in tumor size and will transplant at the end of April. Our dear friend who's heart issues were resolved in one statement-"see you in 5-10 years." Surgery was not needed for the hole found is his heart.
We love you!!!
Friday, April 2, 2004 7:55 PM CST Ok-Just remember that no news is good news! I have been waiting for results from Memphis before updating but still do not have them.
We had our aspirations as scheduled and Dr Santana sent them to California for special testing. We are to hear this next week or so. I will post as soon as I know.
Zoe has been doing well. She has had Hives so bad this last week, that it took shots of steroids and drops to get her past it. We do not know what caused it as we have not changed one thing and she has had no new exposures to anything. She looks great now but was one mass of reddness until we got the shots.
She is looking forward to Easter and has been wearing a set of bunny ears every where. She is very excited that my Dad is coming for a week and sure knows where her bread is buttered.
I want to let the locals know that on April 13 at the Red Lobster in Peru they are doing a Jail and Bail for St Jude. We are going to be there and hope to see some people out to help raise money.
Prayers are needed for some very important people in our live- 1) my brother in law, Darell as he goes in for a heart test. Some of you remember that he had open heart surgery about 11 months ago and there seems to be another problem 2) our dear friend, Jim Smoode, who is in ICU with congestive heart failure and 3) a close and dear friend, who shall remain nameless at this time, who is facing some heart related issues in the next week.4) our dear St Jude family, the Hamptons- Emma Grace has relapsed and is back at St Jude(www.caringbridge.org/ak/emmagrace) 5) Trey (link below) who is so in pain 6) all cancer kids who are fighting for their lives. 7) Sherry a close friend who has 6 lovely children who is battling breast cancer.
Praises to his name-Aaron has seen a decrease in tumor size and will transplant at the end of April.
We will do better at posting I promise.
We love you.
Tuesday, March 16, 2004 4:35 PM CST Did we think that Zoe would not get the CRUD-well-yes but we were so wrong.
We came home on Sunday, from a great week-end in Wisconsin, and found that she was coughing and complaining of a sore throat but no fever. Monday, Zoe had started to run a fever and so we called Memphis. We were told to take her to a local Dr and call back on Thursday to evaluate whether we would come down on Sunday.
I took her to the Dr and she in deed had the start of an infection so she is on the antibiotics. She was thrilled when Dr Twano said she had lost both of her ear tubes. She told everyone. I guess for her it was a very good thing.
Today she has been coughing more and the baby-sitter said she was more tired and cranky. I am sure she feels icky-I know Elmer did and so did I, a few days in to the crud.
We are still hoping to go to Memphis and get this bone marrow aspiration over with. If not it will have to be April as next week-end is Trev's birthday and we hate to miss another one. Last year it was chemo.
We hope this finds you all healthy and happy. Please keep all our dear children in prayer. We have lost so many to this awful C word in the few months.
I spent last night talking to Laura's mom who spent 14 of the 16 years of Lauras life dealing with cancer-I so admire her and Stan and their boys. These parents still keep in touch with our extended St Jude family, have done so much to keep all of us on an even keel while losing their only daughter. Sandy is signing up to be a St Jude lady. This group provides meals and such on every clinic day and do so much more. I hope that this brings Sandy the joy she shares with so many others. God forbid, I should walk her journey some day, but if I do, I hope I can deal with it with the grace and love she and Stan do.
As always, We love you.
Thursday, March 11, 2004 5:56 PM CST Hope this finds you all happy and well. We are plugging along just waiting to head to Memphis next week-end.
Zoe is doing well. She is active, happy and growing. Hard to believe she has cancer. She is still as fiesty and hard to deal with as ever.
We will have a bone marrow aspiration March 22 and have results the next day. We are having all the blood work done the day before.
Elmer and I have both been sick with the crud that is going around. Elmer had a allergic reaction to one of med's he was given but today feels better.
Thank you so much for all the recipies you have sent via e-mail or snail mail. We have met our goal. Cookbooks should be available around June 1.
Some good news-Mallary (www.caringbridge.org/il/mallary) and family welcomed a new baby girl last Sunday. Mallary's dad and grandma sent pictures and called-it was so nice to hear good news. Much Love to all the family.
Travis (www,caringbridge.org/il/travisman) is back in Memphis for chemo as is Tori(caringbridge.org/fl/tori)
Aaron (www.caringbridge.org/il/aarondhunter) is home briefly before transplant.
Please keep all these friends in prayer as well as the many others that we keep close in our hearts.
Again, we thank you for your kindness and support.
WE love you.
Monday, March 1, 2004 4:23 PM CST It has been a few weeks but not really anything to report since we are now doing everything in Memphis.
We are headed back down to our "other" hometown on March 21. Zoe will have her marrow tested and all of her labs. We will have to see what develops from there.
Zoe is feeling pretty well although tired and pale at times. She is doing better at eating and she really has been emotional lately. I think it is the the fact that she can not get outside combined with she is plain tired of lines and bandage changes and not being able to be just NORMAL! She really wants to go swimming but Memphis has different ideas then Peoria about the bandage trick! Elmer goes with Memphis.
We went to my sisters this week-end for Zoe's birthday bash. We had a blast. Vicky and family, Bobbi and Cj,plus Brandy's crew came from Illinois and then the family plus friends in Iowa. She was thrilled. We had great food and a great get-together. Everyone was just too generous! A HUGE thanks to my sister and brother-in-law Darrel for hosting this party. Plus a big thanks to all who brought food-we loved it.
Ok- Folks-we sill need many recipes so if you are reading this you have internet-Please e-mail a few more. We do not care if you send one or 40 but we need them ASAP! Thanks.
We love you.
Thursday, February 19, 2004 4:26 PM CST Zoe is still loving all the greetings for her birthday. She, however, now thinks that next week-end at the LARGE group party in Iowa, she will be 6! I have tried to explain but she is GOING TO BE 6! Oh well, as she gets older she will know that having to many birthdays is not what you want to do.
We got a wonderful e-mail from Dr Santana about what we were facing and feel somewhat better. He explained that under the microscope you do not know how much maligant cells you have and how many are going to mature, so since Zoe had only been off the accutane for 2.5 weeks, he wanted to wait to do any follow-up to see what happened in a month. He also said that studies have shown that benefits of the 6 mos of accutane were not shown to increase with continued accutane. Her odds remain at 75-80% for relapse.
Elmer wants to deal with Memphis as neither the radiation records nor the MIBG were sent to Dr Santana and he wants him to have all the reports asap. Not that he does not trust anyone else but as our Dr. he wants him to have all the information. Therefore we are headed back to Memphis on March 20-24. Elmer is glad. We will do med's in Peoria.
We are glad that we have some new information and will have a bit more peace of mind.
Please remember Mal's benefit on Saturday in Mendota and PLEASE we need recipies.
We love you.
Wednesday, February 18, 2004 3:07 PM CST HAPPY BIRTHDAY TO ZOE! She is so enjoying her special day!
Last night we went to Verrucchi's for her favorite Italian food and she was given a cake. Boy, she loved that. She had Aunt Toni Schultz there and Corey came to see her. She was sent balloons by the VanSchaick's. Paper Dolls from her sitter and build a bears from Sadie. She can hardly wait for more!
Health wise we have no new answers. We will see the Dr next Thursday in Peoria. I am not too happy with waiting but that is when our schedules mesh.
She is feeling great. Eating well and having the same aches and pains but since they found nothing to cause them-I can only guess it is from all the chemo.
Please keep baby Travis in prayer as well as Mallary (www.caringbridge.org/il/mallary) who is in the hospital. Her benefit is Sat and it is doubtful she will be there. We hope so. Also Trey, Aaron, Lexi and so many, many more.
Take care and thanks for all the cards and e-mails of love and support.
We love you.
Thursday, February 12, 2004 5:22 PM CST Until about 10 minutes ago I thought that I would have good news to report as we were told in Memphis that Zoe was cancer free. Then I opened the following e-mail;
Mrs.... Wolsfeld -
I wanted to give you an update on some new information that I received last night on Zoë's results. In the left side marrow biopsy when the pathologist went back and looked at the biopsy there was a single group of cells consisting of ganglioneuroblastoma (maturing). The urine catecholamine came back normal. Based on this updated information, I am not recommending that we change our follow up plans except to do another bone marrow in Peoria next month and in Memphis when she comes in May. I have also kept Dr. Kushner in Memorial updated on her case.
I have sent John a copy of all reports and placed a call to him.
Take care,
Dr. Santana
We have a heavy heart and I am so sorry that we got everyone's hopes up. We are waiting until tomorrow to contact the Dr.
Please keep this in prayer. I will write more when able.
We love you
Tuesday, February 10, 2004 2:24 PM CST Weather is so wonderful-about 55 and sunshine! We walked to the hospital this morning-it was great.
Zoe has had all her test and we will head home after a conference with Dr Santana tomorrow. He has already told us that she could not return to school this year and no ballet or tumbling.
Yesterday was such a hoot. Zoe needed extended time on the table for her MRI. They gave her a bit much of "sleepy" med and she was so wasted. She just could not fully wake up but finally did enough to see Dr. Santana. While we were waiting at his office the St Jude Photographer came to do publicity shots for the New York Times (they may be wrong-but who knows-this is St Jude) Zoe was so wasted she would lay on the table and when they said smile-she would raise her head and give a wonderful grin and then PLOP her head would go. Even the Dr's were laughing. Dr S agreed too much med. We decided to walk back hoping she would wake up but she just kept screaming "I want a shuttle so I can sleep" This was at 11:45 am and at 4 she was still sleeping.
Last night we had dinner with about 20 friends from all over the country. Carol (FLA) made a wonderful pasta dinner and there were delicious warm brownies for desert. We had a great time and it was like old times when we lived at the RMH. The only shadow was the loss of two of our St jude kids yesterday-one 2 and one 17. I have to say that while you NEVER get use to it, you adjust to meet the families needs and your own, while you grieve.
Today she had her bone marrow aspiration and x-rays of her leg. Her rectum was also checked to see why she is bleeding. She recovered much faster today and ate a good lunch, played and then napped.
Tonight we are doing the Crab Shack with the "crew". We are sure glad to have had a chance to be with dear friends and know that we will be together many times over the next years and Hopefully, to rejoice at gradutions and weddings of the remarkable kids we all share.
It is so hard to describe the bond we share with the other parents and families. We are all so desperate to keep our kids alive. We know what the other families are dealing with. We know how hard it is to be away from family and friends. We share the finacial burden this is on our resources and the emotional toll it takes on our marriage and other relationships. Our lives, being it taking a shower or planning a vacation revolves around cancer and all that goes with it. Romance is out the window most days as you are too exhausted from dealing with line flushes, dressing changes, med's and long nights of hearing your child cry out in pain or throwing up. You are exhausted from putting on a good face for everyone. People find it hard to understand why after a year or more of dealing with the situation you can't just deal. You try keeping your child as healthy as possible, telling them sorry-you can not swim, you can not go to school, no dance class, no overnights, no soccer, no ..... It is heartbreaking and the reality of it all is that it is exhausting but it is your job to be strong and complete each and every aspct of not only your own live but the live cancer gives you .
Bottom line -these wonderful people live like you do and understand it. If you want to scream you do-, if you want to cry- you do and it is OK. You can't do that with everyone-THEY get uncomfortable and God knows-we do not want to make any one think of what could happen.
Please remember that whether a family has been at this 1 day or 10 years-the stress, fear, and exhaustion is always there. Drop off a meal, call, babysit, send a card to the family, take the other children out-it means a lot to us.
I am always amazed at our level of support and the love we have been given this last year. We know that the fight is a long one and we are so glad that you are here for us.
Well-enough of my soapbox or pity pot as the case maybe.
One more thing- please remember the other kids, as well as the cancer kids. While we do not have those issues, I see so many sibilings that are hurt when they do not recieve acknowledgement. The cancer child is already in the spotlight and the other kids are already sacrificing so much for the cancer child. I am not saying rush out and buy every child in the house something or send money-I am just saying send a card or a candy bar once in a while. It is so hard esp. if they are young. I can remember my other grandchild, Tesah, wanting lines "cause then you get presents."
Please remember to keep all our St Jude and other kids in life-threatening situations close in prayer.
Please visit Trey's sight (link is below) and keep in prayer as he has relapsed. Please pray for Nick's family as it is so diffcult for them.
Much Thanks for all your thoughts and prayers. Please remember your recipies and Mallary's benefit on Feb. 21 in Mendota.
We love you.
Sunday, February 8, 2004 9:48 PM CST Well-let me say Memphis is like a heat wave-40 and no snow-sure beats the 10 degrees we left in Illinois.
Zoe is in terrible pain-no one got much sleep last night as she woke up screaming about her back and leg. She also had two accidents and when she went today-had bright blood from her rectum. Of course, this and the fevers have been ongoing since December. Our NIBG showed nothing but we are having scans tomorrow and aspirations Tuesday, maybe we will get some answers. Several parents said this was the same leg and/or back pain there children got at the end of the accutane.
Today she slept from Jackson, MO until Memphis (about 3 hours)and cried in her sleep. Once we got here, she was a bit better but still was weepy. She has hardly ate a thing.
Tonight we connected with Marilyn and Aaron, Deb and Lexi, and our newest Peoria family, Julie and Travis. Travis is an
adorable 10 month old who has a brain tumor and has had a stroke. He is so adorable and eats well. Lexi has wilms and of course,Aaron has the same as Zoe. We all went to eat at the Spagetti Warehouse and just talked for hours. It was so great to share war stories and be with friends. It was almost like clinic. Same people, different location.
I have to tell you the Memmphis Grizzlies are the most awesome NBA team. The newst addition to the housing of St Jude families, The Grizzly House is wondeful. The rooms are huge, better laid out than the RMH and every luxury of a hotel. We can't say enough about the house. We have free laundry, breakfast, coffee makers and irons plus blow dryers, maid service, data ports in our room, 3 rec rooms, DVD and fridges in each room. There is a microwave on each floor. We have vending and a small dining room on the ground floor. Their are signed jersey's everywhere plus players visit. We are right on the St Jude grounds. We can walk or ride via shuttle to the hospital. All thanks to the 5 million dollar donation from the Grizzlies! Thanks guys!
We have our first appointment at 6:45 am and meet with the Dr at 11:30. We are done for the day and then repeat on Tuesday.
Please visit Trey's sight (link is below) and keep in prayer as he has relapsed.
Much Thanks for all your thoughts and prayers. Please remember your recipies and Mallary's benefit on Feb. 21 in Mendota.
We love you.
Monday, February 2, 2004 3:40 PM CST I am sorry not to have updated before but life has been a bit crazy here with weather and work.
Zoe is doing fine. Her ANC was 1600 last week and the white count was still low. She has her accutane rash still going but she is feeling better now that she is off that stuff. We were so glad to know it was the last round.
Her leg is still very sore and aches and another mom said it could be bone pain from all the chemo. They had x-rayed it several times this summer in Memphis and thought they saw something and then didn't. Since it is still bothering her we will stress that when we get there on Monday. We have many questions to hit Dr Santana with-so we should have some answers next week.
She so wants to go play in all the snow but we will see when the cold is not so frigid outside. The temp has not been above 20 in the last week. We are expecting 3-5 inches tonight and I am so praying for a snow day. In our line of work-any snow day is a good day.
Please, please remember the items for our "Zoe's blessings"cookbook and also the benefit for Mallary on Saturday, Feb. 21st in Mendota.
Stay warm and dry-We love you.
Saturday, January 24, 2004 11:04 AM CST Zoe's clinic was easy and she had low white counts but the ANC was 2100. She is on her last week of Accutane(praise God) and we are dealing with her outburst just fine.
Cancer families are so good at sharing news and we are certainly glad of that. At clinc another family told us that we had to make reservations before going to Memphis. Something we had never had to do before.
Seems the new Grizzly House on the St Jude Campus is run like a hotel and you must call ahead. I did that and found that they had changed our schedule and Zoe COULD have done her Make-A-Wish after all. Again, you can not fault the wonderful Dr's or Nurses at St Jude, just the schedulers. No new schedule had been sent-"you would have seen it when you got here." Oh well! I am sure that Chicago would have been cold-so we will see when we can do it again.
Zoe, Angel's, Ms Maribeth, both Amanda's and Aunt Bobbi, and hero, Dave attended Northern Illinois University's 1st Annual "UP ALL NIGHT" for St Jude. Dave's daughter, Amanda (yes-another Amanda) was part of the planning committee and had asked us to speak. We were so impressed at how sweet the kids were, how great they were with Zoe and more important, what they were willing to do to earn money for St Jude.
You all would have loved that our little Zoe had about 20 college kids sitting in a circle playing "Duck, Duck,Goose". For about an hour, boys and girls at in a circle and played by "ZOE"S Rules". I have to tell youit was a hoot. Ms Maribeth pointed out that their moms would be so proud of them.
Zoe said her highlight was when the drug doggie "pooped" on the floor. The dog did steal the show but hearing her laugh while telling the family "HE pooped bunches" was extremely funny. She found the pie-eating "gross" and refused to particpate.
We met and heard two other St Jude families who's children beat the odds and are 8 and 9 year survivors. Their stories were similar to ours and it was wondeful to see that both of them were not expected to make it. Given the same 30% chance we are- we know it is a fight that can be won!!!!!
We were there until 2am and just had a blast! Zoe came home with a St Jude chair, shirt, and Baker's Square pie, doggie card and the all important, candy.
A BIG HUGE thanks to Amanda and all the crew at Northern Illinois University for the $20,000 dollars raised for St Jude.
We will be returning to clinic on Tuesday and then again on Friday-We will also be celebrating the end of the Accutane treatment.
Please get those recipes out of drawer and into our hands! We need about a 1000, so every one counts! You can e-mail or send them. Please include your name and location. Thanks.
We love you.
Saturday, January 17, 2004 5:41 PM CST Things at clinic were back to the norm for Zoe. Her counts all on the low side and her attitude from the accutane-awful. We were glad to be "normal" but still wondering what caused the problem. Maybe we will never know. I say run with the good news.
Zoe has two mouth sores and insist on eating salt-needless to say she has a few "Ouch" moments. She is getting the accutane rash on her cheek. This morning she is very testy. We will take that over crying in pain.
Her Make a Wish rep called and had the dates for the ballet and Chicago; guess when-right during Memphis! So I tell Zoe that we have to wait and she says and I quote, "Oh well-maybe we can change to the beach." Ok-then-beach in Michigan! I do not know if I can take the yelling about not going in the water with her lines! Sounds like a great time, sand, water, relaxing-no phone-I would like to have a "Make A Wish" for overstressed families-how about you?
Prayers for Aaron are still needed. According to Mom-it has spread to his head and possibly spine. Mom needs prayer as well as Aaron.
Please add Savannah www.caringbridge.org/il/savannah/ to your prayer list also. She and her family can use the support.
One of our favorite St Jude families,-Emma Grace, Trish, Barney, and Eli are at the all-time greatest fund raiser for St Jude-"Country Cares" this week-end in Memphis. They are one of many who are giving their story and sharing the miracles of St Jude. Please pray that they can be effective to raise the dollars needed to continue to provide service to so many.
FOR THE LOCALS: Mallary from Mendota is going to be guest of honor at a benefit Feb. 21 at Country Ranch on 251 between Peru and Mendota. Please if you can make it-join us and help this darling child who has Wilm's.
Also-Please contribute a recipe via email for Zoe's cookbook. We are very excited about it. Our thanks to all that are helping, plus a HUGE thanks to Mardy and Lenae for taking an idea and running with it.
We love you.
Saturday, January 17, 2004 9:07 AM CST Things at clinic were back to the norm for Zoe. Her counts all on the low side and her attitude from the accutane-awful. We were glad to be "normal" but still wondering what caused the problem. Maybe we will never know. I say run with the good news.
Zoe has two mouth sores and insist on eating salt-needless to say she has a few "Ouch" moments. She is getting the accutane rash on her cheek. This morning she is very testy. We will take that over crying in pain.
Her Make a Wish rep called and had the dates for the ballet and Chicago; guess when-right during Memphis! So I tell Zoe that we have to wait and she says and I quote, "Oh well-maybe we can change to the beach." Ok-then-beach in Michigan! I do not know if I can take the yelling about not going in the water with her lines! Sounds like a great time, sand, water, relaxing-no phone-I would like to have a "Make A Wish" for overstressed families-how about you?
Prayers for Aaron are still needed. According to Mom-it has spread to his head and possibly spine. Mom needs prayer as well as Aaron.
Please add Savannah www.caringbridge.org/il/savannah/ to your prayer list also. She and her family can use the support.
One of our favorite St Jude families,-Emma Grace, Trish, Barney, and Eli are at the all-time greatest fund raiser for St Jude-"Country Cares" this week-end in Memphis. They are one of many who are giving their story and sharing the miracles of St Jude. Please pray that they can be effective to raise the dollars needed to continue to provide service to so many.
FOR THE LOCALS: Mallory from Mendota is going to be guest of honor at a benefit Feb. 21 at Cadillac Ranch on 251 between Peru and Mendota. Please if you can make it-join us and help this darling child who has Wilm's.
Also-Please contribute a recipe via email for Zoe's cookbook. We are very excited about it. Our thanks to all that are helping, plus a HUGE thanks to Mardy and Lenae for taking an idea and running with it.
We love you.
Monday, January 12, 2004 4:52 PM CST Sing Praises to His name: Zoe's scan showed no new tumor activity! We were certainly glad to hear that. According to Dr. Mac "I can't fix what I can't find." In other words he has no answers for the fevers and the pain. We will have to wait for Memphis. We leave Feb.7 and start testing on Feb 9. We are sure wondering but with the crud going around-who knows. We are glad that the scan showed nothing new.
Zoe will start her last round of accutane tomorrow. We will be at clinic every week at least twice. He said he wants to monitor her very closely. That works for me. She did lose about a 1/2 pound. She is hovering at the same weight as when we came home from Memphis in August. She loses a bit and then gains it back.
We are asking for prayer for Aaron-he is back in Memphis with a relapse and things are not the best. Please visit him at www.caringbridge.org/il/aarondhunter. He is the sweetest child always happy. Mom could sure just a boost.
We will check back with you after clinic on Friday.
We love you.
Thursday, January 8, 2004 8:42 PM CST Things were not too bad at clinic. Everyone was in mourning about Laura so the problem about communication was the least of anyones worries. I did hear that in the future they would communicate with Dr. Santana but I think since most know that I have a rather quick temper-not much was said.
Dr Santana was not aware of the situation and since we were already set for the test (and it is VERY expensive) we went ahead. We will have a more comprehensive one in Memphis on Feb. 11th. During that visit we will also have marrow aspirations, scans and the MIBG.
Not much news on the home front. Zoe is feeling better and eating so much that we can hardly believe it. She is still complaining about the usual aches and pains and the headaches. The temps are decreasing in number. She has had a couple of low grade ones but not many. Hopefully it was the crud going around.
We spent Elmer's birthday at Laura's wake. Zoe was so good during the 1.5 hour wait in line. She was so loving to everyone and she was so glad to see cancer survivor, Sarah from clinic and the St Jude website. If you can enjoy a wake, it was by far the most relaxed and loving one I can remember. We saw so many dr's and nurses there, along with other cancer families. It was nice to see Sarah and Chip and spend time talking. Laura'a parents were so wonderful, comforting everyone. The lines leading into the sitting room only showed how high of esteem the Valentine family is held and how many lives they have touched. God Bless them.
We are meeting with the Dr's on Monday at 10am to discuss test results and future plans. Please pray for good news.
Elmer and I are spending a night away tomorrow night, so we are hoping for good weather. We do not know where we are headed but anywhere sounds good as long as we can sleep late and relax.
We will be sure to update with results on Monday.
We love you.
Friday, January 2, 2004 3:19 PM CST Saturday- 7pm URGENT PRAYER REQUEST: Dear Laura passed this evening at home where she had been brought one hour before. She passed with a smile on her face and in her daddy's arms. We are asking for prayer for her parents, Stan and Sandy and her sibilings. God Bless You-Sweet Laura.
Well- I may have started a problem, totally by accident, but the outcome may be a problem.
When we returned home from Clinic today there was a letter from D clinic in Memphis about a scheduled MIBG for Feb. 9th starting with the usual injection. Neither Elmer nor I had recieved the Memphis schedule so we called the D clinic NP and she confirmed our dates and was suprised that we had not been notified.
When asked how Zoe was doing, I filled her in on the temps and illness, weight loss, aches and pains and then told her about the MIBG. She said "Does Dr Santana know?" I informed her that I had asked about Memphis and had been told that (rather rudely) that I could go to Memphis but that it could be done here. She said she was e-mailing Santana as she felt he would want to know and that he may want us to do the MIBG there. I know that 1) he may have been notified, 2) he did not care where it was done but our gut feeling is telling both Elmer and I. "NO Way". Peoria will not be happy with us and I do not care. He is her lead Dr and he needs to be aware. So I have started a problem that I did not expect to start and we will see what the outcome is.
Zoe is better than she was. She still gets a temp, mostly upon waking or early evening, she really complains about pain and headaches. Last night she was playing with Aunt SUESUE and she started just sobbing that her side hurt and then her ankle and leg. Tears rolled down her cheeks and you know she was not faking it or being a "drama queen." She has cried in her sleep with pain but then she would be fine for a while. Her blood counts esp. the white was elevated for HER and her others were still low.
We asked both the Nurse Practioner and Dr Saving their opinion and tumor fever was a possbility they both said. I really get mad as both Dr's avoid saying anything and say something without saying much. No question is ever answered directly. We know that nothing is definite without results but do not ignore our questions or answer with questions.
Her appetite for very salty or sour things is ok but no regular food if she can help it. As long as she gets the motrin she is able to play and feel better.
Today at clinic was probably the most difficult one since we began our journey. Long time cancer fighter, Laura was admitted to ICU on Wednesday, and her family has decided to pull life support. We are all just devestated. Sandy, her mom, could not talk but there was hugs and tears. She asked me to call Stacy, another mom, and I did, but it was a hard call. Up until now the children that have passed have been known but not close to us. For many of us this is the first St Jude family we have lost that we shared with and saw each week. Sandy was our leader, one who was on the journey but was so willing to help lead us and set and example for us. She had been at this about 10 years and knew so much. One who was there fighting before us and one who helped us so much. Please, Please pray for Laura to have an easy passing and for her parents and family to let go. Laura is about 16 and she knew but kept on fighting. May God bless and keep her in his loving care.
On a happy note we were leaving clinic and ran into Dr Ian and Nurse Joanie from PIC. We were so glad to see them. It reminded us how far we have come and how fortunate we are to have these people in our lives.
We love you.
Monday, December 29, 2003 10:05 PM CST Zoe awoke again with a small fever but it was down to 99.5 by the time we got to clinic. Her weight had fallen from 16.5 to 16.3 and she was not hungry at all. In fact,she did not eat until about 8pm when she asked for a grilled cheese.
Dr. McAllister still seemed mystified by this and did schedule an MIBG for the 8th in Peoria. He did spend a lot of time feeling her stomach and when I asked if he felt something, Arlene (who was kind enough to go with me)and I agreed he advoided the question. When the exam was finished he said he thought it was "tumor fevers". I do not know if he felt something or he suspects something.
Tonight Zoe has been very cold, her hands and feet were like ice. I do not know what is going on. They ran blood cultures which were negative. Either way, we are not panicked, but tense. It will do no good and we are trying to maintain, as much for her, as ourselves.
My Dad and sister's group left today, so we are back to us and we are planning to just veg out for the holiday. Well-except for the traditional screaming and cussing at the Michigan opponent (GO BIG BLUE!!!!!!!!!) and my direct insults about the Michigan coach (remember-I am a Bo girl).
May the New Year bring each of you a wealth of happiness. We thank you for being a part of our journey. We love you.
Saturday, December 27, 2003 9:28 AM CST Hello and hope everyone is enjoying the holiday break. Since Zoe is feeling so sick,we are glad to be able to be off. Christmas night she basicly just laid on a blanket, moaning and crying. She did finally go to the bathroom and felt a little better but still was very lethargic. We did not get much sleep for the 3rd night.
Yesterday, she awoke with a 103 temp and we had an appointment at clinic in Peoria. We were sent to the back immediately and her blood was drawn and all the usual intake. They then connected her to a IV w/fluids. She was far from jovial and everyone noticed the change and commented on it. Even presents did not get her going. Her white count was sky high and the rest of her counts were low including hemoglobin and red cells.
After an exam by Dr. McCallister, He told Elmer and I that she needed to have scans and an MIBG. We asked him if he thought she had relapsed and he told us that in his mind we need to run the test. No definite answers. We asked if we were headed to Memphis and he said "not this week-end." I am sure that they want to get thru the holidays but it is now on our minds. We are unsure of anything. We were told that we were going to get the MIBG and Dr. told Sandy to set it up but since we heard nothing and there is days of prep for it, we are bracing for a trip to Memphis.
She awoke today with a fever, still complaining of back and leg pain along with stomach. We were told to alternate motrin and tylnol. When we do that she is somewhat better but still not up to par.
My sister, Jan and my neice and nephews are here for the week-end so she is playing for a bit but not like usual. She is very clingy and wants to be held a lot. She did eat this morning for the first time.
We are nervous and but I will say, that we are not the total mess we were a year ago. In my mind, she did not relaspe and we are not even going to suspect that. Of course, I was the one who knew she DID NOT have cancer. Elmer is nervous and edgy not much sitting. We have a houseful so we go thru what needs to be done. It will be a long week-end.
We will keep you update. Please keep us in prayer. We are to be seen again on Monday and will post after that.
WE love you.
Thursday, December 25, 2003 1:51 PM CST Merry Christmas! Hope Santa was as good to everyone as he was to all of us.
Zoe has continued having fevers up to 103. She has thrown up and is not eating much. She has had some blood around her bowels-maybe from too much feces and last night had two poop accidents. She slept very little and has been much quiter than usual. While not completely unexcited. There was no playing with her cousins or running. Said her back is hurting. They said just keep on the Motrin. We see the Doctor tomorrow. Her fever does come down with the motrin. I think all of us just wanted to have today.
My father is with us and it has been hard for him-his first christmas in 55 years with out my mom. He is doing as well as can be expectd. I know that so many of you are sharing this christmas with Angels. Our thoughts and prayers are with you.
Bless all of you today-We love You!!
Tuesday, December 23, 2003 2:35 PM CST
IMPORTANT NEWS: Dr.K from Memorial Sloan-Kettering e-mailed me today and said that Zoe is doing very well on the Accutane and there seems to be no reason to change her protocol at this point. He did say that if there is a change in her condition following the Feb 2004 then we will reevaluate or if there is a relapse. We are unsure how we feel but we are sure that we are glad they feel she is doing well on the accutane.
Tuesday, December 23, 2003 9:07 AM CST
Zoe awoke about 3am with a headache, general body aches, and throwing up. Her temp has reached 104. We called Dr.McAllister and he has us doing the motrin, cool water rubs, etc. As of 8:30 it was down to 101. We are trying to stay clear of Peoria but if after another dose and more sleep it has not come down. We will be heading down there. I am sure it is the flu but as those of us walking this path know-flu for them is different. Will keep everyone updated and please keep Zoe in prayer.
Tuesday, December 23, 2003 2:35 PM CST IMPORTANT NEWS: Dr.K from Memorial Sloan-Kettering e-mailed me today and said that Zoe is doing very well on the Accutane and there seems to be no reason to change her protocol at this point. He did say that if there is a change in her condition following the Feb 2004 then we will reevaluate or if there is a relapse. We are unsure how we feel but we are sure that we are glad they feel she is doing well on the accutane.
Journal
Tuesday, December 23, 2003 9:07 AM CST
Zoe awoke about 3am with a headache, general body aches, and throwing up. Her temp has reached 104. We called Dr.McAllister and he has us doing the motrin, cool water rubs, etc. As of 8:30 it was down to 101. We are trying to stay clear of Peoria but if after another dose and more sleep it has not come down. We will be heading down there. I am sure it is the flu but as those of us walking this path know-flu for them is different. Will keep everyone updated and please keep Zoe in prayer.
Sunday, December 21, 2003 9:27 AM CST
Happy Holidays from Illinois! Zoe is certainly excited about the presents and there has been a steady stream of them since Dec. 1. Zoe is a child that loves each and every gift even if she has something like it. She just enjoys life. Thank YOU to one and all.
There is happy news-the records have landed!! They are now in New York in Dr K.'s office. It took me calling and calling and then I went to the Director of St. Jude and within 24 hours-boom. Dr. Santana had assumed they were there and we let him know that we needed the added pressure. We will talk to Dr. K after the holidays.
Zoe's counts at clinc remained the same. Her ANC was 1000. Which is good for a cancer child so we feel blessed. Her temper is not much better but only one more round of Accutane and we are done. We figure to hit Memphis in late Jan early Feb.
Zoe has been VERY, uh, diffcult! She wants it and she wants it now!! I believe the Accutane is a huge part of it but I also think that most cancer kids have been granted every wish-now in many cases they think it is their right. Zoe is still having diffculty relating to children her own age group and sharing is a bit, no-a lot of the problem. She has been so tired and achy-everyone tells me the Accutane but we still worry.
We are sorry to tell you the little Jake passed this last week and Charles too. It was a hard week. Please keep both of these Angels in your prayers.
We hosted our annual Christmas bash last night. Over 100 people dropped in and shared a wealth of friendship and cheer. It was amazing to us that we are so blessed with these wonderful people to share our journey. Sadie even came from Chicago-it was so wonderful to see her again.
Prayer Request:
David and Kelsey, who were suppose to be done-went to Memphis and returned home with 0 ANC. We have been told that this is normal but they need prayer.
Aaron is home but needs continued prayer. He had relasped just 4 months after transplant. Acctuane did not help and they are beginning all over again.
Shane-needs prayer as he continues his 7 year (or more) battle with Neuroblastoma. He is from Michigan (yea!) and recieving relapse protocol at University of Michigan (GO BIG BLUE)
Our dearest friend, CJ, had a small spot removed and there is a possiblity it may be skin cancer. This man is our grandchildren's Godfather, our hero, Elmer's lifelong friend, words can not express how much we love him-please added him to your prayer list.
There are so many more-please remember our cancer families at this holiday season.
Sing Praises to His Name-our friend, Sue's, breast lump was benign. What a wonderful Christmas gift for their family.
May God Bless and Keep each of you near and far, known only by e-mail, caringbridge or a constant in our daily life. Words can never express our love to all of you nor our thanks. A year ago we were in CCU with a child that could not talk or even swallow. Today, she is with us and still having a great quality of live. Sing Praises to his NAME!
Merry Christmas-We love you!
Tuesday, December 23, 2003 9:07 AM CST Zoe awoke about 3am with a headache, general body aches, and throwing up. Her temp has reached 104. We called Dr.McAllister and he has us doing the motrin, cool water rubs, etc. As of 8:30 it was down to 101. We are trying to stay clear of Peoria but if after another dose and more sleep it has not come down. We will be heading down there. I am sure it is the flu but as those of us walking this path know-flu for them is different. Will keep everyone updated and please keep Zoe in prayer.
Sunday, December 21, 2003 9:27 AM CST
Happy Holidays from Illinois! Zoe is certainly excited about the presents and there has been a steady stream of them since Dec. 1. Zoe is a child that loves each and every gift even if she has something like it. She just enjoys life. Thank YOU to one and all.
There is happy news-the records have landed!! They are now in New York in Dr K.'s office. It took me calling and calling and then I went to the Director of St. Jude and within 24 hours-boom. Dr. Santana had assumed they were there and we let him know that we needed the added pressure. We will talk to Dr. K after the holidays.
Zoe's counts at clinc remained the same. Her ANC was 1000. Which is good for a cancer child so we feel blessed. Her temper is not much better but only one more round of Accutane and we are done. We figure to hit Memphis in late Jan early Feb.
Zoe has been VERY, uh, diffcult! She wants it and she wants it now!! I believe the Accutane is a huge part of it but I also think that most cancer kids have been granted every wish-now in many cases they think it is their right. Zoe is still having diffculty relating to children her own age group and sharing is a bit, no-a lot of the problem. She has been so tired and achy-everyone tells me the Accutane but we still worry.
We are sorry to tell you the little Jake passed this last week and Charles too. It was a hard week. Please keep both of these Angels in your prayers.
We hosted our annual Christmas bash last night. Over 100 people dropped in and shared a wealth of friendship and cheer. It was amazing to us that we are so blessed with these wonderful people to share our journey. Sadie even came from Chicago-it was so wonderful to see her again.
Prayer Request:
David and Kelsey, who were suppose to be done-went to Memphis and returned home with 0 ANC. We have been told that this is normal but they need prayer.
Aaron is home but needs continued prayer. He had relasped just 4 months after transplant. Acctuane did not help and they are beginning all over again.
Shane-needs prayer as he continues his 7 year (or more) battle with Neuroblastoma. He is from Michigan (yea!) and recieving relapse protocol at University of Michigan (GO BIG BLUE)
Our dearest friend, CJ, had a small spot removed and there is a possiblity it may be skin cancer. This man is our grandchildren's Godfather, our hero, Elmer's lifelong friend, words can not express how much we love him-please added him to your prayer list.
There are so many more-please remember our cancer families at this holiday season.
Sing Praises to His Name-our friend, Sue's, breast lump was benign. What a wonderful Christmas gift for their family.
May God Bless and Keep each of you near and far, known only by e-mail, caringbridge or a constant in our daily life. Words can never express our love to all of you nor our thanks. A year ago we were in CCU with a child that could not talk or even swallow. Today, she is with us and still having a great quality of live. Sing Praises to his NAME!
Merry Christmas-We love you!
Sunday, December 21, 2003 9:27 AM CST Happy Holidays from Illinois! Zoe is certainly excited about the presents and there has been a steady stream of them since Dec. 1. Zoe is a child that loves each and every gift even if she has something like it. She just enjoys life. Thank YOU to one and all.
There is happy news-the records have landed!! They are now in New York in Dr K.'s office. It took me calling and calling and then I went to the Director of St. Jude and within 24 hours-boom. Dr. Santana had assumed they were there and we let him know that we needed the added pressure. We will talk to Dr. K after the holidays.
Zoe's counts at clinc remained the same. Her ANC was 1000. Which is good for a cancer child so we feel blessed. Her temper is not much better but only one more round of Accutane and we are done. We figure to hit Memphis in late Jan early Feb.
Zoe has been VERY, uh, diffcult! She wants it and she wants it now!! I believe the Accutane is a huge part of it but I also think that most cancer kids have been granted every wish-now in many cases they think it is their right. Zoe is still having diffculty relating to children her own age group and sharing is a bit, no-a lot of the problem. She has been so tired and achy-everyone tells me the Accutane but we still worry.
We are sorry to tell you the little Jake passed this last week and Charles too. It was a hard week. Please keep both of these Angels in your prayers.
We hosted our annual Christmas bash last night. Over 100 people dropped in and shared a wealth of friendship and cheer. It was amazing to us that we are so blessed with these wonderful people to share our journey. Sadie even came from Chicago-it was so wonderful to see her again.
Prayer Request:
David and Kelsey, who were suppose to be done-went to Memphis and returned home with 0 ANC. We have been told that this is normal but they need prayer.
Aaron is home but needs continued prayer. He had relasped just 4 months after transplant. Acctuane did not help and they are beginning all over again.
Shane-needs prayer as he continues his 7 year (or more) battle with Neuroblastoma. He is from Michigan (yea!) and recieving relapse protocol at University of Michigan (GO BIG BLUE)
Our dearest friend, CJ, had a small spot removed and there is a possiblity it may be skin cancer. This man is our grandchildren's Godfather, our hero, Elmer's lifelong friend, words can not express how much we love him-please added him to your prayer list.
There are so many more-please remember our cancer families at this holiday season.
Sing Praises to His Name-our friend, Sue's, breast lump was benign. What a wonderful Christmas gift for their family.
May God Bless and Keep each of you near and far, known only by e-mail, caringbridge or a constant in our daily life. Words can never express our love to all of you nor our thanks. A year ago we were in CCU with a child that could not talk or even swallow. Today, she is with us and still having a great quality of live. Sing Praises to his NAME!
Merry Christmas-We love you!
Friday, December 12, 2003 5:21 PM CST It sure has been cold here! Zoe has liked the cold as she has a nice new coat, hat and mittens! I think anytime she can be outside-she is happy.
Mike took Zoe to clinic today as I have had a touch of the flu and Elmer is coughing. Her weight had dropped about 1/2 pound. Her counts were down from last week and her ANC also. She has been a bit more tired but not a huge difference.
This round of accutane has made her more achy. She has complained about more headaches and nauseau. Her mouth is sore and she has the strawberried tongue. I will be glad when this accutane regiment is over.
On Wednesday, her ballet teacher Miss Sam and Sarah came to deliver tons of presents bought by the other students. She was so thrilled to see them. The presents were awesome and we so appriciate them. She so misses ballet but hopefully in January she can go back. Thanks so much to all involved.
Today at clinic, the Jolly Old Elf was there and she sure reaped the rewards. She got Barbie Swan Lake and another toy. She was so excited. Santa had stopped by the house last Saturday to visit (totally unexpected) and she and her cousins were treated to a private visit. She says that wants she wants is a secret-we are hoping she tells soon. Otherwise-oh well!!
We are asking for prayer for AAron-he is having such a hard time with this relapse. Mom too. He is one of our Peoria kids and was in Memphis doing the same thing at the same time as we were.
David (Zoe's love) had his last treatment today and is headed for his end of treatment in Memphis. We just love Dave and his father, David. They are so special and Zoe adores Dave. God Speed to them-We will miss them so much!
Please if you live anywhere in the area-come by our house on Dec 20 from 4-?. Tip a cup of cheer and wish Zoe a Merry Chirstmas. We would love to meet and see our friends and supporters. It has been your continued prayers that have kept us strong.
We love you!
Friday, December 5, 2003 2:23 PM CST Zoe had clinic today and all went well. Her ANC was 1600 but her counts were all low. White count is down for the second week in a row.
We found a lump on the backside of her ear last Friday and did not want to say anything one way or another about it as we were very nervous about it. They said today at clinic that they believed it was from the radiation. We were glad but will keep a close eye on it. We never accept anything when it comes to a lump.
Today was our first snowfall of the season and the roads were nasty in some spots. Zoe, who usually sleeps all the way to Peoria, wanted to talk and ask questions. I kept saying"Zoe I need to watch the road and concentrate" but that did not seem to bother her in the least. She was quite disappointed later today as it started to melt. She wanted to make a snow angel, more like a mud one now.
Yesterday, our wish granters told us that Zoe's wish to got to the "real" ballet will take place Feb 13 (tenative). She will attend the Joffery Ballet in Chicago. While she can not dance on stage, she will present the Prima Ballerina with flowers at the end of the performance. We will stay a few days and see the sites of Chicago. She is very excited!!
In talking with the nurses at clinic we found that there were a total of 43 new cancer kids this year. WOW!!! It is so sad that 43 other families are on this journey. There are 3 from our little area. May God bless them and their families. Please remember all our St Jude families at this time of the year esp. the new ones who do not know what to expect.
Thanks to Kathy and Kemp Smith for the donation of 1200 minutes of phone cards to our St Jude parents. So many times parents are not blessed with resources to make the calls that are need or even to communicate with loved ones. These will be a big help to those families. Anyone else wishing to donate phone cards and send them to us or e-mail me and I will tell you where to send them.
Our Christmas bash to thank everyone who has given so much over the last year will be Dec. 20, 2003 from 4-? at 100 W 5th, Spring Valley. We would love to have anyone who can attend to do so, esp other cancer families. Please come and tip a cup of Christmas cheer. All ages are welcome. One year ago, we were starting this journey, scared and uncertain what the future held-we still are not sure but there is much to celebrate this year.
Take care and we love you!
Tuesday, December 2, 2003 9:39 PM CST Hope everyone's Thanksgiving was wonderful. We enjoyed a great dinner and had a good day. There was so much we were thankful for this year esp. the sound of 4 of 5 kids running the halls and playing in the basement.
Zoe's Chemo Angel came on Friday. Sadie is a wonderful young women from the Chicago area. She adopted Zoe thru the wonderful group "Chemo Angels", in the early days of treatment and has stayed so loyal to Zoe and our family.
Sadie is blessed with so many talents among them art. Many of her gifts have been handmade and so orginal. This summer Sadie traveled in Europe and created a book called "Harry the Huskies Summer vacation". Harry is the stuffed dog she carried from London to Paris to the Vatican and so many other places. Harry's trip was photographed by Sadie and each picture showed Harry at so many wonderful places. Harry now resides in Zoe's room.
We so enjoyed our visit and are so blessed to have Sadie in our live. She is studing to be a pediatric cancer specialist. We think her future holds many great things.
Zoe is still complaining about her ears and her neck. No fever, no real symptoms. We figure starting tomorrow and continuing for the next 2 weeks (during accutane) she should be a real peach! The Santa thing is working for now but we are sure during the two weeks of drama we many lose ground. She can almost spin her head at these times-TRUST ME!
The local Girl Scouts held a benefit for Zoe on Saturday and did a wonderful job. They were worked so hard and Zoe loved it. Thanks to Leader Amy Summers for all her hard work.
The Princeton First Baptist Church's 4-5 year olds used their offering to buy Zoe an American Girl Doll, necklace and then a Nemo pillow was hand made for her. We had a wonderful time joining them last Sunday. As the director of a Social Service Organization, I believe that to teach children when they are young to give back is very important, obviously so did the adult leaders. May God Bless these boys and girls for their prayers and gifts for Zoe.
Christmas at the Wolsfeld's is heating up. We did not realize until we called Memphis that there should not be a real tree. The transplant floor was very clear on that. We had to rush out and purchase a fake one (prelit for Elmer). We have that done but the house is almost there. Maybe by the Week-end. Zoe is enjoying the numerous Advent calendars and gifts that have been sent.
Our Christmas bash to thank everyone who has given so much over the last year will be Dec. 20, 2003 from 4-? at 100 W 5th, Spring Valley. We would love to have anyone who can attend to do so, esp other cancer families. Please come and tip a cup of Christmas cheer if you can. One year ago, we were starting this journey, scared and uncertain what the future held-we still are not sure but there is much to celebrate this year.
Clinic is Friday, please pray for the counts to be on the rise.
We love you!!
Wednesday, November 26, 2003 1:16 PM CST Happy Thanksgiving eve to one and all! It is has been quite on the home front since our return from Memphis. We are still trying to get the records to Sloan-Kettering and I am VERY frustrated. Monday-I start a phone blitz to the records department to find out what the hold up is. Three Months and still nothing.
Zoe went to clinic for the first time in 3 weeks and we found her counts down and then we were told that we needed to start going every week until told differnt. Her white count was low as well as her ANC. We were told that her chance of relapse is 75-80 We were told that in Memphis also but it always seems so shocking. We were also told no school and no ballet.
Zoe's hair is growing so rapidly and it is lighter plus curly! She really loves having hair to comb. She hates hats as they covers it. Her mood swings are rampant and esp. when we are on the accutane. She has three more cycles.
Elmer and I went to the Alabama concert last week-end in Chicago! These guys are great and we were staying at the same hotel and met all but Randy. Randy plugged St Jude many times and showed video. Mark, Jeff and Teddy were extremely nice and we talked to Jeff and his beautiful wife, Lisa a couple of times. Even at 2:30 in the morning Jeff was mingling with the 15 or so of us in the lobby. We will be taking Zoe to the concert in Cedar Rapids. She likes Randy too. If you can see them-do!
Zoe's chemo Angel-Sadie will be visiting us on Friday. Sadie has been so faithful to Zoe, showering her with cards and gifts thru this long journey. We can't wait to see her.
Please keep the following loved ones in prayer:
1) Aaron has relapsed and is heading to Memphis. We were diagnoised at the same time and had transplant together. He is from our Peoria Affliate. This is so hard on his family.
2) We lost Baily and April in the last month. We lived with both at the RMH in Memphis and it broke our hearts. Their familes need prayer also.
3) Baby Jessica and family are headed to Memphis to begin the same journey that we are on. They are scared and nervous and we sure know how they feel.
4) David (zoe's love) has shingles and is almost to the end of his treatment. Please pay for a successful end to his journey.
5) Kelsey is done after 3.5 years. May God bless her also.
Thank you for your faithful visits-we have so many reasons to be thankful. You our support team are at the top of our list.
We love you.
Monday, November 10, 2003 9:46 PM CST Let's just say that once again a trip to Memphis with very few answers and no test. That is correct-the medicine needed to do the NIBG did not arrive from Canada-they knew it last week and nobody let us know. We are going home tomorrow. If it were not for cool weather we would swear it was our last trip in August. Same thing different month. Even Dr. Santana did not know-just those wonderful schedulers. We will come back in Feburary. Trust us we will call first.
There are positives! We only lost 2 days of pay, we ate at Corkey's and we saw some old friends. Plus we saw many of the LA LAKERS! Even Malone and Bryant.
Answer wise, Dr Santana said that the tumor was the same. It would probably change by Feb. due to the radiation. He said he concurred that some pain was due to radiation but thought many of the complaints were from the accutane treatment. He felt she was doing fine but still have no answers about the exploding bowels or the constipation. We do not know why she is hot and then cold. Blood work was good. He did think she was a very BIG drama queen and said that she had a flare for the dramatic. Like that was a suprise! He is doing the referal to Sloan-Kettering this week. He believes we have a very high chance of relapse and if we can get it-we should. He did warn us that it was VERY expensive around $100,00 plus expenses but we intend to due it no matter what. He also told us that U of Michigan has a program but only when you relapse. He did not want to do any scans, bone marrow test or anything until Feb. Said it would take that long to get anything going with Sloan-Kettering. So why we still do not have any answers, some are better than what we had before.
The food situation is sad-Elvis's diner has REALLY left the building-no more bread pudding etc, but we did eat at Corkey's and will visit the Blue Plate for breakfast. I know, it is sad when we are so familiar with a place we
hunger for certain foods.
We rode the main street trolly and did some shopping for Christmas from the St Jude gift shop. Cade and Papa swam and we ladies rode the city wide trolly. WE all enjoyed a pecan pie on our last night.
We saw our RMH friends, Trish and Emma Grace-who looks so wonderful. We saw Peoria friends that were just starting the bone marrow trip and we saw our RI friend, Glynn, who is almost done with what they can do here. We also spent this morning meeting new families who are just starting their St Jude journey. So many to keep in prayer.
We will update when we get home.
We love you.
Tuesday, November 4, 2003 4:11 PM CST It was Zoe's last clinic until we return from Memphis. Unfortunatly, we could not go due to a funeral that we both need to miss work for, so once again our Angels and Heros stepped in. A huge thanks to Mardy and Jim for taking HRH Zoe to clinic. She was in Royal mode, but appeared to be doing well blood count wise.
Zoe is still complaining of aches and pains plus being much more tired. They keep telling us that this is due to radiation. I am keeping a list of questions I want anwered in Memphis and I hope I get the answers. I also want to know why Sloan Kettering does not have our records after requesting them over a month ago.
I am so tired of everything being blamed on radiation. Maybe it is, but we are not sure, as so many other parents tell us that they did not have many of these issues. Sometimes I think the pat answer is easier. I do not want her on steroids forever and I want to know why our child is in pain. I suppose most parents feel this way, I am not the only parent nor is Elmer dealing with the frustration of cancer. She is is having so much trouble passing her bowels and cries everytime. We have her on stool sofeners but it does not help. She screams in pain. We have told them about this and they have increased her dosage but it still is not helping. Having cancer is bad enough but seeing her in pain and feeling so helpless is terrible. A lack of answers only compounds the issue.
My brother-in-law, Darrel lost his mom yesterday, very unexpectedly. She died in the same room at Boone County Hospital as our mom did in July. Please keep my sister and Darrel in prayer. They have had a tough year. They came at Christmas last year for Zoe's surgery. They were with us as we heard the bad news, Darrel had to have open heart surgery in May,they came to Memphis and hit the power outage, then my mom and now Darrel's mom. Please keep them in prayer.
We will be leaving Saturday for Memphis and taking Cade with us. It will be his first solo trip without his twin sister, Tesah. We are looking forward to it. Please keep us in your prayers as we travel on Thursday to Iowa for the funeral and again on Saturday to Memphis.
We will update from the Blues capital of the world!
We love you.
Friday, October 31, 2003 9:29 PM CST Halloween was a bit of a test for Zoe. She had finished up her radiation today and was not ready for napping, so we only had about 1 hour of sleep this afternoon. We took her to the school halloween parade and she enjoyed seeing her friends and cousins.
Tonight she was excited about going with the entire Knutson,Smith,Goodrum,McCormick group but tuckered out after about a block.
I picked her up and she DEMANDED we find baby Gia who had just left our house, but we couldn't and she told the world that "mommy didn't try enough.". She also was not leaving the car without cotton candy from Buzzy's house. We cried most of the way there but Thank God people understood when Buzzy moved us to the front and made the cotton candy, kissed Zoe, and we came home. She just laid around for awhile then and regrouped.
Dr. Mac told us we could skip clinic today and we took him up on that. Dr Campbell, who did her radiation, told us the sore throat should start soon and she complained tonight. He warned us the real test will be in a few weeks and we will see more aches and pains. She will be more tired and less hungry. They were so good to her at the clinic when she finished. Gifts and cards-how nice of them.
I have to tell you that this whole month a very kind lady named, Barb had provided gifts for Zoe as she ended each radiation treatment. Barb was having radiation too and obviously was moved by Zoe. Yesterday a card came from Barb with a gift to ToysRus, saying that she was so able to do her treatment because of Zoe. GOD BLESS YOU, Barb. She would never tell anyone her last name, but whoever she is-we wish her the best.
We ask that you continue to pray for all of the families are on the cancer journey and esp. for those familes whose children became an angel this last month- way too many.
We would also ask that you keep our dear friend, Jim Smoode in prayer as he is in ICU. He is one of my heros and needs our prayers.
We love you.
Tuesday, October 28, 2003 3:28 PM CST Ok-I just knew if I bragged about how quick we got out of clinic-I would pay and I did! Got there about 8:45 and at 11am they realized that they had forgotten to write us in and we were finally seen. It's ok-we all make errors-bragging was mine!
It was a hoot being there-they all were dressed as Bikers because Dr. Mac has gotten a Harley-which is bigger than he is! We laughed at all of them and some of the kids were dressed so cute, some had the best ideas for costumes. Zoe will wear hers on Friday. I will then take pcitures to post of the whole crew as it is just too good to not let everyone see.
Zoe will have her last three days of radiation starting tomorrow. It is the early morning stint again. Leave here at 5:30am back around 9am. Elmer to work and then he works until 4:30pm. Her neck is still red, scabbed and painful. She is still complaining of the headaches and such. Her voice is 100% improved. The steroids did the trick. She still is not eating like she should but I am sure that she will come back strong. Nothing has ever made her not eat.
She had a blast with Grandpa Marland and Aunt Rhonda this week-end. She pulled his suspenders and fought with him a bunch. It was nice to see her so active.
We saw several people at clinic who need your prayers.
Emily (brain tumor) has not ate on her own in 7 mos. There is nothing more that the Doctors can do. Please keep this family in prayer. We will be headed to Memphis the same week so maybe we can do dinner with Mom.
The twins (ALL) are back from Memphis. These boys are 6 and also are dealing with Autism. Please keep their family in prayer.
While Nathan is looking great-the family needs support of all kinds. Please pray for all aspects of this childs family and for others to help meet their needs.
Sandy's daughter is having a scan tomorrow. I know that the older they get (16) they know-esp after 12 years of cancer. Please pray for good results.
We thank you for your love and support not only for us but all the children we ask for help with.
We love you.
Friday, October 24, 2003 1:06 PM CDT Another quick day at clinic! Of course, when I heard that there at been 8 kids in the hospital this week and 4 more in Memphis, plus 6 in the back getting chemo-I understood.
Zoe is breathing so much better since being put on a steroid on Wednesday. I had had enough of her breathing problem and said something needs to be done and the steroid was ordered. I am so glad it has done its job. She is, of course, in steroid mode-Hyper, crying, demanding but that is ok at least she can breath during her tantrums.
The blood work-well that is another story. She was very high on Tuesday and right back down today. No one has an explanation and said we will see her on Tuesday. I am not sure what to think and feel about that. She has not gained or lost weight so that is a good thing.
The radiation Dr called and we start on Tuesday, same time same bat station. They said 3 or 4 days more. I am so sure that this is will result in the voice staying just above a whisper and then more steroids. Sometimes I think the cure is worse on them then the illness.
We will be spending the week-end with my dad and my sister, Rhonda. They should be arriving on Saturday. It is also our baby, Sarah's, 17th birthday. She wants a homemade German Chocolate Cake and frosting-so I guess I am baking.
Tomorrow is Make a Differnce Day-we will be doing a tag day for SV Project Success but I am suggesting that if any of you are looking for a small project -The Midwest St Jude Affliate needs phone cards and gift cards for parents. You can send them to: St Jude Affliate-Glen Oak Ave, Peoria, IL. These cards would be given to parents who might be stuck in the hospital in Peoria or Memphis and who need NOT to max their phone credit card, have no credit card or cellphones. Please keep that in mind. So many of you are so generous to Zoe-please consider making a donation in her name of these cards. Thank You!!
A big HAPPY BIRTHDAY TO AUNT BOBBI!!
God Bless and we love you!!
Tuesday, October 21, 2003 9:47 PM CDT Clinic went so quickly today. 1.5 hours in and out with blood and meds. Ok-I know that there are some of you saying, bull but it is the truth-I swear!!
Zoe's counts were great but her eye, breathing, and general aches and pains are still there and the voice is getting worse.
Dr Saving said that from what she sees-her right pupil is not opening and closing so the left is larger, trying to compensate. She said Memphis should send us back to the eye Dr when there.
Dr Saving attributes all the rest to the radiation that she starts again on Monday for 4 days. Zoe got so sick late today that she could not even get down her pm med's down and she would not eat. She kept saying she felt sick, hot and wanted ice packs on her legs. Her head hurt too. I still have my doubt that it is all radiation but who am I? I guess since I have no experince with radiation it could be. She is sick and I just feel helpless, esp when she can not breath. One of the Nurses thought Oxygen would help but the Dr. did not order it. She is still asking for pain med's.
Before she felt lousy, we had lunch at the Gold Mine, saw Aunt Barb Pozzi and chatted and then went to get Halloween bags from Officer Doug-who gave her an offical SVPD patch to sew on her sweatshirt. No more speeding for ME-LOL.
Her biological Mom and her fiance, Chris, were her tonight and we all had a great time. It was Holly's birthday and even that did not get Zoe moving. She just was too sick. It was a nice visit for the rest of us. Chris is very nice and we are happy that Holly is happy.
We will update on Friday after clinic.
We Love you!!
Friday, October 17, 2003 3:34 PM CDT Clinic was ok. Zoe's blood counts are still low and her ANC is low but not terrible. They did a chest x-ray and found nothing but she is pooling in her throat and that is causing the rattle. She is stil raspy.
Zoe is looking rough and her face and now her neck is broke out from acid and then she is so congested. As I said yesterday, she is so tired and does not want to eat. I feel like the radiation has put us back a few months and everyone who sees her says she looks worse than when she had just had a transplant. It is scary.
The other thing that is bothering me is before we went to Memphis everyone noticed that her right pupil was bigger than the other. Nobody was concerned until we saw Dr. Santana and he was. It went away after her transplant but this week it has reappeared in the left eye. I did question them at clinic about it but got no where. I was told not to worry. I know too much not to worry-Memphis was worried then and will be again. I will watch it and document how long it stays this way.
Tomorrow, Greg and Debbie, Angel Noah's parents are having a farewell gathering as they are returning to Hawaii. My sister-in-law will be attending and sending a balloon up to Noah. Please pray for this family and their journey home without their baby.
Sunday, Lexi and Debbie leave Peoria for Memphis. Lexi relapsed for the 3rd time with a Wilms tumor. They are having a transplant. Please pray for this single mom and 6 year-old Lexi. They are so scared and we sure understand that. We will be looking forward to seeing them on our visit in November. They are expected to be there for at least 10 weeks.
We had hoped to attend the Ladd St Jude Bike-a-thon but with her counts down, we will have to bow out. It is so hard for her to be kept inside esp. when the weather is so nice!
We are so appriciative of all your efforts on our behalf and once again have to say that we are just so fortunate to have friends and family like we do.
Have a great week-end!
God Bless and We love you.
Thursday, October 16, 2003 12:21 AM CDT I, first thought that we were just paranoid, but even the radiation Doctors were shocked at her apperance and her continued need for more med's to knock her out for treatment, plus her inability to speak above a whisper, so at 11:00am they called and said, "We are giving her a 18 day break, she needs a rest." Thank God!!
Zoe is looking rough and her face is broke out from acid and then she is so congested and her breathing is hard from the radiation. She is so tired and does not want to eat unless it is soft-like oh say, the shrimp platter that I got for Boss's Day. Thanks, Arlene. She ate the shrimp because it had the main indgredients for her-salt, soft, cold! Her voice is almost gone by evening and of course, her attitude is rotten. She has deep circles and is pale. We are going to the St Jude Clinic tomorrow, so we will see where her counts are.
I feel like the radiation has put us back a few months and everyone who sees her says she looks worse than when she had just had a transplant. It is scary.
The radio interview went well. I think that we did a good job and I was so impressed by Mark, the parent who lost his son at 7 from a brain tumor-a blastoma type. They sure have come along way, but says it gets easier but you never are out of the pain. We found that we share the same St Jude Doctors and he is also a friend of Cookie-the "singing lady" as Zoe says from St Jude. It is always nice to talk to another person who has made the journey-you can be honest and they relate.
We are having to keep Zoe in and away from the others, so please add this situation to your prayers-Zoe is very social and is missing ballet and her cousins and friends.
Again, please pray for Morgan and all the other familes that are on this journey.
God Bless and We love you.
Tuesday, October 14, 2003 4:32 PM CDT Zoe is unable to speak above a whisper and is in pain. She had a bad night and then more radiation. She says her throat burns and I am sure it does. Her head hurts and she hates to swallow. The radiation Dr told Elmer to get pain med from Dr McCallister or Saving at clinic today. Elmer did speak to them and she is now on Tylnol 3's. The codine will help her sleep and the pain lessen.
Her ANC is still high but she has lost more weight and her red and white counts are still down. We will return to clinic on Friday and hopefully, they will be better. Until then we will not have her around others or at ballet. I sure hope she will be better before Holloween as she is very excited about being the Sugar Plum Fairy!
I think the radiation has been harder on her than the chemo. Then she got sick and it was done. We still have 7 days and we are concerned about what will be left of her voice and how sick she will be. Of course, she is so tired and so is Elmer. Leaving at 5:30am is the pits.
Please keep Morgan in prayer as she fell at the RMH at Sloan-Kettering and broke her leg. She is in a lot of pain and still getting the injections. Her site is www.caringbridge.org/nc/morganbarnes.
Tomorrow I have been asked to be on the local radio station to raise funds for St Jude. I have done this so many times for Project Success, but I am a bit nervous about tearing up when I talk about so personal of a subject. I will be sharing the microphone with another family who's child lost the battle several years ago. Please pray that I can be an be an effective voice for this cause.
Our prayer request are for Morgan and all of the children with life-threatening illness. Lift them up, volunteer, or send a donation-you will be rewarded.
We love you and GO CUBBIES!!!!!
Sunday, October 12, 2003 8:18 PM CDT Well-we know nothing more about Zoe's illness than we did before. Her blood counts on Friday were lower than Wednesday but nobody was concerned as the ANC was still good. White was 3.1 and Red was 3.0. I guess Dr. McAllister and Dr Santana have been e-mailing and now we have to go to Clinic twice a week like we did before transplant. It really irrates me that they say nothing as she obviously was in pain and while feeling better, she is not 100 BR>
Radiation has caused her voice to be very hoarse and raspy. She is coughing a lot and wants to drink. We were set to have the radiation be done on Wednesday and then on Friday they told Elmer that they had not added in her boost days-so we will not be done until next Wednesday. We still are doing the 5:30am runs to Bloomington so she is on the table at 7am home by 9:30. On clinic days it is straight to clinic and then a 3 or 4 hour wait there and then home. Elmer is tired, Zoe is tired but it will soon be over.
One of the good things that has happened is that we were told on Friday that the records were being sent to Sloan-Kettering. I know that I am VERY unpopular because I won't back down and I am advocating for Zoe because I HAVE to. I am so glad that the process has started.
At Clinic on Friday, Lisa, Kristen, Dave, a couple of others, and I were comparing notes and seems most of us have gone off in Memphis. We love St Jude but some of that staff is rude and do not listen to the parents. It really helps to share at clinic and know you are not the only parent in the ADVOCATING position. The Dr's are great, and most nurses are but the med room and pharmacy plus Dr's in radiology just do not get it. Keeping a child off food and waiting for hours without ChildLife or other activites is a real problem. So when you are still at the hospital for 3 hours because your supplies have not come, or med's have not been given-the staff is going to hear it. Sick Kids want to go home or to their hotel, RMH etc.
My sister, Joyce and my brother-in-law, Darrel were here for the week-end and we had a great time. Zoe was so thrilled and loved to see them. Joy and I worked on Zoe's scrapbook. I forgot some of the pictures and I just loved looking at her BC (before Cancer).
Once last cute moment: Zoe's hair is coming in and she is so proud of it. Today she was worked up a sweat. Her head smelled terrible-so I said "We have to wash your hair." I had said the same thing yesterday after she had played at EMMA's. After PAPA washed it today she said " Mama-we need to stop washing it-I need it and it might fall out if we rub it too much."
Please keep all of our fellow cancer families in prayer. There are just way too many new names on our caringbridge pages.
We love you.
Wednesday, October 8, 2003 12:46 AM CDT Things were going along ok until about 6:45 last night when Zoe began to scream that her head hurt and then it was a loud, moan and she laid down on the floor holding the right side of her head and just crying and moaning. I immediately picked her up to look for injury-since her cousins and she had been playing earlier. There was no evidence of any bump etc. but she was obviously in pain.
When Elmer got home at 7:15pm she was still crying and said she was hungry. At the table she alternated between moaning about her head and being hungry, however, after two bites she said "I don't feel so well." Anyone who has cared for her knows what that means and she threw up.
Afterwards, she laid on my lap and PAPA cleaned up the bathroom, she slept. Soon she was awake and still in pain so we called Dr. McCallister. He said side effects from either the Accutane or radiation and told us to give her tylnol or Alleve and bring her in today. We did but she lost that too. She slept for about 2 hours and then around Midnight she threw up again and was still in pain. I do not think I had ever heard her cry in pain like she did last night.
Today we went to radiation and then clinic. She said her head had stopped hurting but she was not hungry or thirsty. According to our Nurse Ruth and Dr. Mac-she has lost over a pound since Friday. They started her on an IV and then she just rested. Her major complaint is stomach and backache and leg pain. Her blood work came back ok, so they sent us home and she is to stay off med's and food until tomorrow and then go back to clinic on Friday. She is asleep now and for Zoe not to be hungry is crazy strange.
Dr.Mac said if she got worse or lost more weight we would have to go to Memphis for test. Please pray it is just the flu going around. We hate the thought of Memphis again and would like to wait until November. Of course, we will do what we have to.
Here you are just sailing along, things seem good, radiation is almost over-and BAM-something new. It is almost like the first days-what is wrong, is it the bone marrow transplant, is the cancer growing....Like a broken record in your mind, esp. when you know how fast this cancer reappears. Blood work means so little now-ok it is normal-it was in the beginning too. You worry when it is low, high, average... So we will wait this out and keep you updated.
Again, we ask you to pray for Angel Noah's family and leave a note in their guestbook at:
www.caringbridge.org/hi/noah.
Also, one of our own clinc kids, Joey passed away earlier this week. Please lift his family up in prayer
We love you.
Tuesday, October 7, 2003 6:53 AM CDT This is a sad morning in our house as Baby Noah became Angel Noah earlier today. It is so very hard to lose one of our caringbridge families but esp. one who you knew personally. Noah was being treated at Duke and my sister-in-law, Susan was involved with the family. Debbie, Noah's mom, had ordered a Zoe's day in the Park shirt to help us out. Please visit his site at www.caringbridge.org/hi/noah and leave his parents a note. Greg and Debbie have written so personally and shared their feelings so elequently (I know the spelling is wrong) that you will be moved to tears.
Zoe is moving on with radiation and will be finished next Wednesday. I know these early morning runs are beginning to take a toll on both Elmer and Zoe. They leave at 5:30 am get back for morning care about 9am and then Elmer goes to work for 8 hours. I so wish I could help out but I can't as I have to drive my route. It sounds so petty to say we are tired of all this so soon. I know that cancer families must reach a point of saying-I am so tired. Then you see what Greg and Debbie have gone thru and you just feel guilty esp when Zoe is doing so well.
We are still fighting for Sloan-Kettering to get the records and it seems like we are being resisted so today I start the process of e-mailing and harrassing everyone until Dr K at Sloan has the info. It seems crazy that the Dr's want to resist a treatment that could save Zoe's life. So many other parents have told me that it was the same for them. Well-If we do not advocate for her who will?
We had a great week-end with Susan, Kevin, and Lily. Lily is so sweet and happy. She reminds me of both her parents. This week-end my sister, Joyce is coming to scrapbook.
Again, I ask you to lift Angel Noah's family up in prayer and Please remember all the children that are fighting all life-threatening illnesses.
We love you.
Friday, October 3, 2003 1:38 PM CDT Zoe's ANC was almost doubled from last week and her blood counts remain the same. She is feeling quite frisky and that is good. We have been warned that her radiation may catch up amd make her tired and have a loss of appetite. So far it has not.
We are still working on Sloan-Kettering. Elmer said that Dr Saving said that they had not requested anything but in fact they did say what had to be sent. He signed something in Peoria and I will fax to Memphis. We want to move ahead.
We heard from the Make-A-Wish foundation that her trip to the ballet would be in December. We had requested to stay local as she is still in treament so we think we will be in Chicago. I said a nice week-end there plus ballet would be great. I am so sorry about New York but we need to be local just in case.
Thanks to Amber for leaving at 5:30am for radiation, What a saint and to Cheryl for watching her. She had a blast and loves Paisley. It is a long day for anyone who takes this shift. I can't due to my morning route and we have to have a bus permited driver. Elmer has been exhausted when he comes home after work-it is a long day. Eight More to go.
Elmer's sister, Susan and Kevin plus Lilly, their 9 month old are coming for a short visit this week-end. Zoe seems excited but we will see. She is not much on having to share the spotlight.
Baby Noah Needs Prayer!!! Please visit his website and let his family know you support and are praying for them. WWW.caringbridge.org/hi/noah
My sister-in-law, Susan, is involved with this special family and for this we are so blessed. Please keep this darling baby close in your heart.
Have a great week-end! We love you.
Tuesday, September 30, 2003 5:13 PM CDT Zoe began radiation today. She was put under about 8:15 and was home by 11:00am. She slept most of the day and was very tired even awake. She seemed to tolerate it very well. This will continue for 12 days. They finally have the number nailed down.
The radiation team called today and moved her to 7am so she will be leaving here at 5:30am. Tomorrow Saint Amber Dhesse is taking her. I tried to cancel and say Elmer would do it, but she insisted. Thank YOU-Amber. On top of being a saint for doing this-her mom is willing to baby sit until I get off work. WOW!
Our babysitter-Jess is expecting and began having some bleeding problems-please keep her and her baby in prayer. Her husband is the reporter who has followed this journey of ours and we are praying for good news for them. So we will be using friends until Jess can come back but NOT too soon. We are so blessed to have people like the Dhesses to help out.
We have contacted Dr Kurshner at Sloan-Kettering to get the ball rolling. We contacted our St. Jude Dr's to release the records but we sense a bit of hesitation. We heard that we would from other families but, we are determined and if you know me at all, you know what that means. The other families are telling me to hang in there and I am going to but she WILL get the treatment at Sloan-Kettering come hell or high water!
We will keep you posted on radiation and such. Have a great week.
We love you.
Friday, September 26, 2003 4:58 PM CDT It has been a long day. Clinic was packed and so many new children, several with this same terrible cancer. Zoe's white and red counts were down and her ANC was 1100 compared to the 3200 from last week. No one seemed to concerned and we were told we would start radiation on Tuesday of next week.
Our friend David, was at clinic with a high fever and had been in the hospital only 1.5 weeks ago with the same thing. David has ALL and is only one chemo away from having completed treatment. Please keep him in your prayers.
The nurses were promoted today by her HRH Princess Zoe. Sue was moved from Garbage Lady to Tape Lady, Ruth to Garbage lady and Molly to shoe lady. What a hoot-I did tell them that I hoped the Union would give them the raise they so deserved in their new jobs. I would like to tell Princess Zoe that she is in fact not their boss, but they so encourage her-it is hopeless!
Thanks to all of you who have let me know that they are living with same "Royal" Pain we are with Princess Zoe. I am a firm believer in the power of punishment but these kids know all the ways to get around it and many, because of the attention, do believe they are in charge. Keep us parents in prayer for the sanity to deal with them when their moods become overwhelming.
We will be leaving in the morning for some Adult time and are so looking forward to it. We are sure that it will be refreshing to just sleep as late as we want-eat what we want, watch what we want... We may never come back-LOL.
Please remember all the families dealing with ill children in prayer, esp. those who are just starting their journey. Most look shell shocked and are so scared. I remember how scared we were and how so many of you shared your journey with us. Now we hope to return the favor ten-fold. God Bless you.
We love you.
Monday, September 22, 2003 7:05 AM CDT We are experiencing some "zoe" burn-out these last few days.In other words she has been a stinker! She still has a hard time playing with other children and will not share. We had friends in over the week-end and it was hard to punish her over every infraction but she spent most of Sunday afternoon in her room. We have decided that being one on one in Memphis, where your every need and most of your desires,are met immediately, has caused her to think she is the head of the house. We are hoping that she will begin to come out of it when there are limits but we will see.
Besides other children issues, she is hot and cold, and not tired and not hungry but now she is hungry there is no satisfying her and we are at wits end! She is a crier and uses it way to much. Hey-other cancer parents -have you seen this in your child or is it just US??? Zoe was a handful before but this is so much more.
Dave and David, our friends from clinic, invited us to Morton on Saturday for the St Jude 5K run. We had a blast. Zoe got to go on stage and I did some St Jude Christmas shopping. We had a great time. It was so good to see David out and about considering he had just spent 4 days in the hospital with a fever.
We are heading out on Saturday Am for an overnighter-alone. Our first since Feb. Elmer is making all the plans and I will just be suprised. I am so looking forward to it. Angel Sandy will take her on Saturday-AM while Sarah is at work. Sarah will have her after that. It is a break that we both are so ready for.
We will do a CT on Thursday and have clinic on Friday. Radiation will start the next Monday. Then a break other than clinic.
Have a great week-Love you all!
Thursday, September 18, 2003 2:43 PM CDT UPDATE SEPT 19-2003: A HUGE thanks to Amber Dhesse for taking Zoe to clinic. Her blood counts were great and her liver functions normal. Got a call from radiation that we will have a CT on Thursday with sedation and then start 12-15 rounds on Monday of the next week. Less than the 20 originally thought to be needed. According to them she will need sedation for the radiation. We are hoping not.
What a week! We had our first and second ballet, tap and tumbling class and she LOVED it. She did it all and just got up on those toes, did a summersault and was moving for dear life. Everyone was so impressed on how she could get up on her tippy-toes. There were some kids that thought she was a boy and their parents were mortified but I was like "it happens all the time." This week-the kids were all pals and nobody said anything. She will get her tap shoes next week-we can hardly wait!! She and Tesah, her cousin, who attend with her-was a little shy at first but this week-was into it, will drive us nuts. It is so cute how the girls and one boy yell "see you at ballet class." She is so thrilled to be part of it. Thanks to the Dhesses who got us in touch with Miss Sam.
Zoe's blood counts were great and the second simulation was wonderful, however, we have no news to report on that aspect. We have heard nothing about when they will start. We are hoping soon and get it over with. She is growing hair and she is so thrilled. She calls it her "peach fuzz".
There were over 700 people at her benefit and a great amount of money was raised. The rain held off SO many kind and generous people. She had a blast and just played all day. It was great to see Miranda and Ginny there. They look wonderful and Katie Johnson-a ALL survivor was there. Such a miracle child. We remember when we were packing any thing she could eat for Paul and Amber to take to her. God is so great in his blessing on these children. There were so many people here and my family, plus my nephew, Mike who was 9 the last time I saw him. He is 20 and wants to be a police officer. He thought Spring Valley was great but he lives in San Antonio-scares me what he does for fun-if we were exciting. Words can not express the feeling that Elmer and I have for these hard working people. What a feast, roasted pork, hot dogs, brats, hamburgers, chops every kind of salad, every kind of dessert plus drinks, music, beer tent, silent auction, and clowns, games, and so much more. The whole event a donation from over 150 people and businesses. Thank You to all the helped, donated,worked, bought a ticket and attended.
Amber Dhesse is taking her to clinic tomorrow and we will update a little more then.
Please continue your prayers for all of our families.
We love you.
Monday, September 8, 2003 9:26 PM CDT We had our radiation simulation today. All went well-she was spoiled by everyone and she loved the mask. She wanted to bring it home but was told not until after radiation. We should know by Monday-when it will start. Dr. McGee thought 20 rounds at 24-gray. He said other than a sore throat and fatigue-there should be no side effects. We are glad to be getting started.
We made a trip to clinic on Friday and all went fine. Everything was up except white count. ANC was over 2000, so we were glad. She was so glad to see Dave and David. She was ready to give them hugs and kisses. She enjoyed the day. Today-we stopped and she was exchanging elephant kisses with Dr.McCallister-all the time proclaiming to hate them. She did tell him she liked Ohio State also I told her she was about to lose her happy home and Dr. with comments like that. A 4-year old with a football mind-I swear I do not know where that comes from-LOL.
We spent the week-end preparing for the guest arriving for the benefit. Our basement will be clean but not finished. We will have 6 extras here and 4 at a hotel. It will be the first visit since Mother died. The grandkids were upset that their might not be grapes brought, funny what they think of. It was always Mother's tradition to bring fruit and pudding. We will have a nice time, I am sure.
She enjoyed the soccer game on Saturday-although she spent most of it cuddling on the Pozzi family. She was glad to be out and see people. She was good at Mass too. So we had an uneventful week-end as far as "zoe time" was concerned.
Elmer started back to work today-full time=10am to 6pm. He was very glad to be back and was confident with our sitter Jess Cooper. Her husband is the reporter that has been covering Zoe for the News-trib. It was nice to have someone we know.
Every sign in town seems to have the "Zoe's day in the Park" on it. She loves and told me she would invite Aunt Vicky to be her guest. I told her I was sure that Aunt Vicky was one of the "Bosses" of the benefit. I am equally as sure she will be there. There is so much neat stuff for the auction-hand carved computer desk-from Richwoods-end tables from Steinbergs, more tickets to games-concerts-I sure wish I could bid. Thanks again to everyone who is doing this-it is so wonderful!!!
A big Happy Birthday to Corey VanSchaick! Your one special golfer.
We love you.
Thursday, September 4, 2003 4:14 PM CDT Zoe is doing fine and glad to be at her house "always" as she puts it. She is sad about not starting school with her friends and cousins but Miss Maribeth has taken her to play this week to help her adjust. She so loved school and will miss it until at least after Christmas.
We are headed to Peoria for Clinic tomorrow. We will get her first counts since Aug 17. It will be good to know where we are at. We should get news on the newest phase of her treament-radiation.
Today a letter telling us that we are to be in Memphis for the week of Nov. 10 to 13th was sent to us. We were a bit hesitant to open it at first. We will be in Memphis when it is not hot!! Wow-I can't wait. She will have her NIGB and her scans. It will be a week we will be on pins and needles.
The benefit is really coming along and I am so grateful to our friends. There are great great auction prizes, open tickets to a St. Louis Card game, Cher farewell tour tickets, gift baskets for services. The "Zoe's Day in the Park" shirts are just awesome with her picture on them-Great Job-Kyle of the Locker Room. They can be purchased thru Vicky at 815-664-5437. I am so impressed by the peoples kindness to a family they do not know. It is September 13 for 2-8pm in Spring Valley. Need rooms-want to fly in-free airport pick-up is available and if you need a place to stay-well my house is packed but there are others.
I have included a plea from Baby Noah's family below. His first Birthday is coming up and they are asking all of his caringbridge family to share the news and make it special. My sister-in-law, Susan has met and formed a bond with this family and Zoe loves to look at his webpage. Please take time to read and think about Noah.
Tuesday, September 16, is Noah’s first birthday, …a huge milestone for him! We are asking that on his special day, you would say a special prayer on his behalf, for God’s blessings of healing on his little body and for his donor cells to grow. We are asking that everyone mention our special prayer request to your friends, family members, fellow prayer warriors, co-workers, acquaintances, etc. We are hoping that our coming together to say some extra prayers on this day will make a big difference for Noah as he begins his second year of life… prayers for God’s blessings of healing, renewal and life from here on out. Please mark your calendars for this very special day…Noah’s Day of Prayers for Hope and Healing (9/16/03).
We love you.
Saturday, August 30, 2003 8:46 PM CDT We have arrived home and we had a great trip with the girls-barring the fact that we did not have to be there! We are certainly pleased that it was nothing but a fat deposit (textbbok-according to the Dr.) and we are in possession of the CD to take to Peoria.
We will have a rest week and then to Peoria on Friday. I hope that McCallister is in so we can talk about what we are to do. Dr Mcgee is the Dr. we are to see to proceed but do not know when he will call, probably after we go to clinic.
We ended our trip to Memphis by taking a trolly ride and enjoying one last, Mississippi Mud Slide; a dessert that is made up of 4 brownies, oreo crumbs, choclate sauce, Hagan-das (spelling is off) ice cream and topped with Whipped cream and nuts. It comes with 4 spoons, although I think the girls could have ate it all themselves. We had ate supper on Beale Street at the "Eat Drink Boogie Repeat" cafe or Rum Boogie Cafe. The girls out did themselves with the "cutie" smiles and were asked on stage to take a picture with the band. It was a trip that Tesah will never forget. Cade had informed us that he will be our next passenger.
Hope one and all are having a happy, fun,and most of all restful, Labor Day.
We love you.
Friday, August 29, 2003 1:08 PM CDT For the first time I am truly disgusted with a doctor at St Jude.
As most of you know, we were called down here because of a forgotten test. We had sat around for 4 days prior to leaving and then the day after we got home, they called for us to come back for this test. We came on Wednesday and was test for the test and Dr's appointment on Thursday.
Thursday, the test was done and then the Dr. decided to skip the appointment and have us come in at 11:00am on Friday to see him. Ok-fine. We showed up (Zoe had not ate due to suppose testing) on time. They said the Dr would be right with us-an hour later-no Doctor and Zoe had not been called for simulation. We continued to wait-and yes-for those who know me-my temper was showing. They showed us to a room and send someone else in-to pacify us. No luck-we said she has been with out food for over 12 hours and was hungry. I said-"look- we have done our share of waiting but this is rude and inconsiderate. We are having any further radiation at home." Just a moment they say- "he is the head of the department." I say "TOO Bad-I run a corporation and never make people wait like this."
At this point Zoe still has not been sedated for simulation and we have been waiting on a Dr for 1.5 hours. He comes in and I say pretty much the same and he said "a few more minutes." Ok-at this point Zoe and Tesah are not happy and neither are we.
Then it clicked the test was not needed, as we had figured at home, since we knew Dr Santana, would not miss anything; and they were looking for Dr MCAllister or Dr Santana to calm me down when they told us-it was nothing. I said to Elmer-"I would bet a million dollars they are looking..." Five minutes later, Dr Santana walks in and Elmer looked at me and I said "told you."
As I had suspected-the clavical was nothing, a fat deposit, THANK GOD and the only place that was to be radiated was where this Dr had said it may not need to be-in the original area. She needed no simulation today. Dr Santana was wonderful and there to pacify me. We are going home to radiate and then back here on November 15-for the 3 month check up.
I suppose I could have been nicer, but I think that if they had told us "I am sorry but we are really needing to be sure of what we see and I am sorry I did not get to it yesterday." Instead of nothing and not keeping Zoe without food for over 14 hours for nothing-I would have been less confrontational.
With all that being said, on to better things. The trip has been wonderful-the girls have been very good (minus a few Zoe moments) and we have taken a trolly ride and a carriage ride. Tesah and I went swimming and we ate desert first on several ocassions. We are headed home tomorrow.
Thank God for Good news and we love you all.
Monday, August 25, 2003 4:56 PM CDT Zoe is still feeling really great! She has some cracked lips and her small blisters have popped and are peeling. She spent some time outside today and loved it. She eats far more than she use to. Her favorites are still the salty stuff.
We went to Iowa City yesterday for my Dad's birthday. It was a tough day for him and he shed a lot of tears, but we all had a good time. He was pleased that Zoe could come and he will be here with several others for the benefit.
We will leave on Wednesday for St Jude, Memphis. I am so angry we have to go back but what can we do. We are determined that she will have radiation here and that is what counts.
Our St Jude, Zoie is out of the hospital and at the RMH! Praise God. She has lots to therapy coming but we are so thankful for her life.
I will probably not update until Thursday evening.
We love you.
Thursday, August 21, 2003 4:06 PM CDT Clinic was wonderful. Zoe had an ANC of over 3000 and all other counts were great. She still has some small blisters on her head and her lips are cracking and have some small sores from the acid.
Zoe has had an exciting week! Yesterday, was the big day as she sat for some portraits at Valley Photo. She was such a ham and Alicia and Moe did a great job. I will post them when I get them. She smiled and was pliable-but you can tell which ones Alicia was teasing her in. What a grin!
I did tell her that Rob and Joann were going to bring in baby Gia for pictures right afterward. Zoe was upset when they were not there as we were leaving-but as soon as we started out the door-they appeared. Joann and Rob were so welcoming to Zoe and immediatly ask if she would like to hold the baby (now if I had waited 15 years to blessed with a child-I don't know if I would be offering); Zoe was thrilled and held Gia so nice.
Then came the big moment-Joann and Rob asked her out to ride the horses. Well-that was it. We agreed on "after dinner" but every five seconds it was "are we going now?". Sarah was not being left behind for this outing, so about 7pm we arrived to a greeting from the "boxers". They lapped and jumped and Zoe loved it- at first. We headed to the barns where she brushed a horse, and then chose, Barkley, Rob's horse and Joann saddled him up. Sarah was asked if she wanted to ride (thank God or she would have been devestated) and Zoe was switched to Noah (or baby Noah-after our caringbridge friend). Joann led her around and she had a blast. We did spend some time fawning over the baby, and with Rob and Joann fawning over Zoe. We had a great time-Thanks Guys.
As we started home, Zoe was very quite and then said "JOJO said I could teach Gia how to ride but Momma, Gia is little and that horse is so HUGE. I think we should wait a little bit." What a wise young lady!
We are headed to Iowa on Sunday to meet my dad and sisters for his 81st birthday, the first without my mother. We will be taking the traditional birthday gifts, Walkers Shortbread and Horehound candy. Zoe is hoping her pictures will be done for the gift giving part of the excursion cause "my job is to make Grandpa Happy." We told her that during my mom's funeral last month and she still is on the job.
Zoie in Memphis is out of ICU and doing great. When I talked to Chasity last night the child was screaming up a storm because Daddy left! That screaming was beautiful and praise God she can scream where a week ago she was still be kept in a semi-coma. Keep those prayers coming.
We love you.
Tuesday, August 19, 2003 6:02 PM CDT Not much to report. We are adjusting to home and loving every minute of it.
Zoe is doing so well and we are so glad. The daily routine is always meds, lines, more med's and more med's. She takes 7 in the am and 9 in the pm. WOW! It takes for ever. She hates it but loves the pudding Elmer puts the med's in.
Elmer went back to work today and was glad. He is working 2-8pm and wishes it was full time but that can't happen. We were a bit upset that his insurance would not stay in place but Zoe comes first and we will just have to bite the bullet. He has to work full time to keep it and we can't. He joins the ranks of many others with our insurance. I won't get on my soapbox about National Health Care but think about it-when your family faces a crisis.
Sarah is back for her Junior year at St Bede Academy. Thanks to a grant and an unknown benefactor. We are so thankful she can finish where she started high school. She has a 4.14 and is in all honors classes. Thanks to Pat Pirch for the help in the right direction and to our beneifactor-GOD BLESS YOU!
Little Zoie, our family in Memphis, is doing so much better but prayer is still needed. She took her own ventilator out on Sat and she is still without it. Praise God.
I know we are all thinking cancer when we look at these pages but I am asking for prayer for two military families .
The first is from Boone Ia. The soliders who were bombed about two weeks ago-and survived, one is the son of a friend of my sister, Joyce. He is coming home and prayers of thanksgiving need to be sent for his survival. So many times we ask for but not thank for.
The second is a solider from Spring Valley, Joe Peshel. Joe always brought his kids to Project Success Events and he and his wife Kris, are very special people. He has weighed heavy on my heart since he left. Please pray for his safety and peace for his family.
We have clinic on Thursday this week so I will report in following that.
We love you.
Sunday, August 17, 2003 7:20 PM CDT Zoe is doing great except for the need to learn how to play with kids again. I think that she is so use to being the center of attention that she expects to be it at home. Only problem is that there are a lot more kids here to get attention.
This morning I heard her tell Elmer that she would tell him how to do her med's and when, he said no she stomped her feet. She was put in time out and was very mad. It got so funny because she kept saying "I don't like it when you make me mad and punish me." When we would not respond, she would get louder. Later she told Bobbi-she was being "punished" but was not sure what for. Yea-right!
Dr Saving was unsuccessful in having us stay here for the test. We will head out on the 27th and be back on Saturday.
We are not very happy but what can we do? We are not taking the radiation there-we are just determined not to.
Her health continues to be wonderful. She has gotten the rash that we were told to expect from the acid but her med's and benedryl take care of that. Her appetite is strong and she is coughing less. The air purifiers are doing their job and we are glad.
The stuttering is still there and we expect to start speech soon. It is very noticiable when she is tired or in a hurry. I think it is 'post-tramua" stress.
Zoe's big complaint is that we still make her wear a mask in a crowd. She went to see Blue and Steve yesterday and we made her wear a mask. She had a blast at Stacy and Mike's and because we knew them and she did not have to wear a mask.
Our house is pretty much done and we are enjoying it. Tomorrow we will be heading to our jobs. Elmer will be talking out to his plant to talk to his bosses and see what he can do as far as hours and I will be heading back to full time.
So many have asked about the fundraiser-this what I know and it is very little. It runs from 2-8. There is food, entertainment, an auction and who knows what else. Details are best gotten at the addresses listed in our introduction at the top of the page. I was told to stay out of it-guess everyone know about my control issues!
We love you!
Friday, August 15, 2003 2:13 PM CDT We are enjoying being home. Working to put all the gifts and such away. We are hanging pictures and restocking after the redecoratimg that took place.
However, the peace was short lived when St Jude called on Thursday am and said that they needed an one more MRI. I remained calm outwardly, but boy, was I mad! They want us to come back at the end of the month but at Clinic in Peoria this moring, we told Dr. Saving and she was going to have a chat with them. She sees no reason why we can not have the test here. There is no reason for us to go back as both Dr. Saving and MCallister can prescribe the acid she needs. We have no reason to return to Memphis that quickly. We are determined to stay put until the first 3 month check-up.
Clinc was so great. All the "family" except the Daves. Zoe is doing great and just so glad to be home. Her counts were good and her ANC was 1700. She acted like she had never left. There were a lot of changes in some of the children, some hair loss, some lost weight but mostly good news. The staff was great and Dr. Pearl stopped by and we were so glad to see him.
Zoe is going to Emma's to play tonight and she is so excited. They are cooking out and we are going to go shopping. Alone-we are not sure we know how to act alone.
Again, thanks to everyone who helped make our homecoming so special.
We love you.
Wednesday, August 13, 2003 10:56 PM CDT With apologies to Dr. King-"home at last, home at last, Thank God Almighty-home at last." We are so glad to be safely in our hometown.
What a homecoming! As we came down the hill, a police escort (we had no idea-we thought that there was trouble ahead) met us and led us home. All the roads were blocked and police at each intersection. All our friends children holding signs on the corners and our front yard full. What can we say except thank you. Tears were flowing and we knew we were so, so blessed. Thanks to All esp the Spring Valley PD. We could never express with words what love we feel for all of you and how lucky we are to have these people in our lives.
Zoe was SO excited!! She loved the attention and wanted her rainbow kitty. The sirens and police cars and all the people-her face just beamed! She felt great and gave kisses and was so thrilled to see Emma and all the friends. They played and they had got a birthday cake for me. Zoe had to blow candles with the rest of the children. WOW! Thanks Corey for the late night snack of Shrimp!
Our house was spotless, all our favorite foods and drinks in the frig. nothing to do but enjoy our home.
Zoe will go to clinic this Friday and we will start Radiation soon. Right now we are just enjoying being home.
Again, thanks to all involved! We know that if given the choice we would never want to be going thru this but if we have to-thanks to our "hometown" heros for making our homecoming really special and our lives easier!
We love you!
Monday, August 11, 2003 5:56 PM CDT We were officially kicked-out of D clinic today and told we will see you either in 1 month if Peoria can not prescribe the Acid or in 3 months if your home Dr. can prescribe. We love Dr. Santana and when he says that he expects us to go home tomorrow and that we will be told the radiation will be done at home-we believe him. We will see the last Dr in the Am -the RD-he will make the final choice of home or here. Please pray it is at home. So many others are just sitting here waiting for the radiation-we do not want to be on the schedule and waiting.
We trust Dr. Santana so much the room is being packed as I write. We never knew you could gather so much stuff in 90 days! Zoe is one blessed little girl!
In reflecting on these last 90 days-so much has happened. We are going to miss the friends we have made on this journey and we expect to keep in touch with most. We have seen people lose their children, survive daily with a child hanging on in ICU, children sent home with hospice-so much pain and then- the happiness at the good news. Obviously for us the loss of my mother has changed this family for ever. It is so hard to call my Dad and she does not answer or to have him call instead of mother and ask how she is. He suffers from dementia and somedays-I am leading him to remember why we are here. I know that in 20 minutes my life changed forever. I will need to step up to the plate and help with my father, our roles reversed. I have barely had time to grieve and yet-life goes on.
Tomorrow-Luke,Jessica,the woodchucks, and so many others are leaving. We will always remember them and think how much we learned about caring about others from them. our thoughts will remain with Stanton and Zoie and their families as they continue treatment.
We are grateful to the staff here esp after the "non-tornado". They have done everything to make our stay pleasant. We have met Sandy and her family who have brought us meals and helped us feel like we had a friend in Memphis.
We have been thankful for the people at home and our family and friends who have made the trek to Memphis, kept our house and family entact, strangers who have sent money and gifts. We are truly blessed.
We know she is not "cured" and more treatment is needed but this HUGE step gives us more hope than we have had in a long time. Sandra Garland always says believe in the power of prayer-I sure do!
Speaking of prayer and good news-Madisons MRI was normal!! Praise God!
I will not update until we are home unless the answer is we are staying-then look for me on the Channel 8 news!!!!!! "Women goes ballistic at St. Jude".
God Bless you!! We love You all.
Sunday, August 10, 2003 9:42 AM CDT Hope this finds you all cooler than we are! It is about 100 here and boy-is it humid!!
We had Pizza with Tina, Jeff and Stanton, plus Tori and Carol on Friday. We had a great time and laughed a lot at the kids. Stanton, who is two, was being pulled in the wagon and another little girl got in and he had is arms around her and just cuddling. I am still amazed at how these kids just have a blast and we parents are fretting. Ah to be young.
Yesterday-we visited the Casey Jones railroad town in Jackson, TN. Zoe had a blast and was in and out of trains plus walked all over. She ate well and was very good. It wore her out but it was ok. She slept on the way back and was excited to see dinner had been done by a church. She ate and played. Even though she had been exhausted, she still played and did not sleep until MIDNIGHT!
We are still praying to go home on Wednesday but that is minor compared to the other request we have for prayer.
1) little BJ, who lived upatairs here at the RMH became an angel on Thursday. Please pray for his family.
2) Jessica, who Elmer tried to be a donor for, has been told that her tumor is still growing despite chemo, so her family has stopped treatment. Please pray a donor is found and the family has peace with this choice.
3) little Zoie is making some improvement. Please pray for this to continue. Her family has needs at home so please pray that these will be met and Travis can stay with his family at St Jude.
Thank you for all you do for us-We love you.
Thursday, August 7, 2003 5:26 PM CDT Praise God from who all blessings flow! We have had the best day ever-or least since Dec. 5, 2002-Zoe only has 1% cancer left in her bone marrow! It is the none exploding kind-adult. The tumor seems to be gone and we have a "hot spot" on the right clavical area and here is the BIG news-we could go home for radiation on Wednesday!! She will have to take rentoacid (spelling could be wrong)for 6mos! If Dr. MCCallister is licenced to give that med-we will only come back occassionally., otherwise, we will come to Memphis once a month for 2 days! This does not mean she is "cured" but that for now we are doing super. Neuroblastoma quickly reappears so we are going to look at the sloan-kettering injections down the road.
We went to the Hula dance last night at St Jude. It was a blast. She danced every dance-ate, drank and partied for 2 hours. The Peoria group of parents and kids were a little "naughty" we took decorations, limboed and acted crazy-there are pictures- and in the middle we decided if we post them-McCallister would make us come home-We were sure we would be in Big Trouble with the Big Doctor!! It felt so good!
I saw a grief counselor today and found I was not crazy and this relieved me in a way. I know that I will get stronger each day and feel good that others shared the same fears with her. Darn-I am Normal!!! Well-as close as I get.
We are asking all of you to please pray we can come home on Wednesday. Also for Zoie who is making small steps towards improvement.
Please remember-Maddie and pray for great test results.
Many of us are leaving the RHM this next week. I can not tell you how much these people have meant to us. Pray for Issac's family-Lukes family, Aaron's family, Stanton's family and all the wonderful people still here battling this terrible terrible curse called cancer. I believe that this group of people were here when we were-thru God' hands.
Bless them, and all of you! We love you.
Wednesday, August 6, 2003 10:00 AM CDT Arrived in Memphis to find Zoe in great spirits and eating like a horse. She had a bone scan yesterday and aspirations on Monday. Today she only has one appointment in the late afternoon.
Her Royal Highness is very demanding and VERY VERY demanding-did I mention she was demanding. Her and PAPA have great conversations as she tries to convince him he is wrong about everything. I pity the poor royal "subject" that marries her!!!!
Elmer reports that Dr Santana feels that the tumor has shrunk so much that surgery is no longer an option but we will do radiation on what is left. We are hoping that it is a back forth situation. We are to meet with him on Thursday.
My ride here was wonderful and gave me some time to think and relax. I am so glad to be here and see my St. Jude family.
Elmer was tested yesterday to try and be a bone marrow donor for Jessica. It is a long shot but she needs it and he is wiling to try. You should see the bruises!
Zoie is still in ICU and there are no answers on the horizon for her. Travis and Chasity said that the Dr's said that they would keep trying until they ran out of options. Please remember them in prayer.
Maddie had her MRI/Cat in Peoria yesterday with results due Thursday-Please keep the Dhesse family in prayer also.
Thanks to one and all who took care of National Night Out for me. It is a large event and I was torn beween staying and just letting go. I let go and it went great!! I am so proud of the Board and workers-Great Job!!
The telethon in Peoria raised 3,000,000 for St Jude. The family I worked with, the Kreckmans and our letter raised, $25,000 . I was thrilled to see "Zoe's Angels" on stage. Zoe was featured in many segments and her photos were displayed on the stage. I talked to several people including the "garbage lady" and Val. I miss you guys and love you all.
My father is doing well and that takes a big burden off my mind. I really am thankful for all the cards, letters, memorials etc. My family is so blessed.
We love you.
Monday, August 4, 2003 6:00 PM CDT Zoe and Elmer returned to Memphis and found her counts to be up and she is again, doing well. Elmer was exhausted but was glad to get back to the testing and hopes this long ordeal will be over soon so he can come home. I am leaving tomorrow to go to Memphis.
I know that so many others have suffered the loss of a parent and I guess for me this was the final straw. I am exhausted, overwhelmed and so desperately need to be with my husband that Memphis is my only option.
I am so thankful that there are others willing to pick up the slack I am leaving them with. God Bless them all.
I will update after we have some results. I love each and everyone of you and thank you for allowing me some "private" time.
Please keep Maddie in prayer-she is having some test on her optic nerve and we need to pray for her family.
Also for Zoie as she is still in ICU at St Jude.
God Bless you.
Saturday, August 2, 2003 6:24 PM CDT On behalf on my entire family, I would like to thank everyone for the all the expressions of concern, cards, phone calls, and prayer since the unexpected loss of my mother. Everyone in Spring Valley, Iowa, Memphis, and all spots in between have been so wonderful. Words could never express our gratitude.
Zoe and Elmer left at 7:30am this morning for Memphis. Zoe was in good spirits, wish I could say the same for Elmer. I have never needed him more to be with me but we know that Zoe needs him more. Saying goodbye was so hard for my Dad and Elmer. We know that we will survive but it hurts so much. I left for Illinois at 10:00am-and the seperation from my father was so VERY hard for me. I have always been a "Daddy's Girl" and so watching him cry and be so devestated has been diffcult. I am thankful that I have 3 sisters right there.
Zoe seems to have aches and pains but nothing too severe. She is on antibiotic and will begin test on Monday. She was so happy to be with her cousins and aunts plus so many people who contributed to her fundraisers in Iowa. God Bless them. A Big Thanks to Glenda who watched her during the funeral. We will keep you updated on her progress.
Today is the local St Jude Telethon. We had so hoped to help out but could not. We will watch them on TV tonight and cheer them on from afar.
Last night's Relay for Life here in the Valley was so great! I hear that Zoe has 30 or more luminaries in her honor and thanks to the Angels and Hero's for representing us.
A huge thanks to Bobbi, CJ, Corey. Dave, Suzi, Ben, Vicky Brian and so many others that have helped with the house while I was gone. We are so blessed with friends and love ones who we can lean on.
I was so comforted by CJ, Bobbi and Corey's trip for the funeral. It was nice to have friends there that I could be a bit more relaxed with. Thanks guys!
Again, Thank You from the bottom of my heart.
Wednesday, July 30, 2003 8:38 PM CDT Hello, this is Candyce's friend, Bobbi, again. I have just returned from Iowa, where I attended the services for Candyce's mother. Everything was beautiful, lots of family and friends, it was a nice tribute to her mother. Candyce's husband, Elmer, and her daughter, Sarah, sang "How Great Thou Art" just beautifully. It's truly amazing the strength that Elmer has - taking care of Zoe all this time, driving 13 hours to attend the services, and then singing for his mother-in-law's funeral service. Candyce was doing pretty well, she is a tough cookie. Her dad is having a rough time, but his family will look after him - he has some wonderful children and grandchildren (great-grandchildren too) Everyone was very warm and welcoming to me and my family. I met some family and friends that I have seen sign Zoe's guest book, and it was nice to put a face with their names. Zoe looked well, but is experiencing some back pain. She was enjoying all the attention from everyone. We were luckily able to spend some time together playing and I got some much needed hugs and kisses. She is such an amazing child - the way she understood death took my son Corey by surprise. Candyce and her daughters will return on Saturday. Candyce's grandson Trevor is staying till Saturday also - this way he can spend some more time with his papa and Zoe,who he was soooo happy to see, and also go to camp with his cousin. Elmer and Zoe will head back to Memphis on Saturday also.
Just a reminder that the Relay for Life is this weekend. The luminary ceremony is Friday evening around 9-9:30. Any of Zoe's Angels who would like to do a lap, should meet at Hall around 8:30 or so - wear your shirt. Candyce asked me to take photos for her. The St. Jude Run is Saturday - if you see anyone out taking collections, please be generous.
God Bless
Monday, July 28, 2003 3:57 PM CDT This is Candyce's friend Bobbi. Candyce has asked me to update Zoe's web page. It is with a sad heart that I write that Candyce's mother has just passed away this morning. Candyce had just found out that her mother was ill and was unable to be there when she died. Candyce had just returned Sunday evening from Memphis. This all happened rather sudden and unexpectedly. Candyce and her daughters have left for Iowa to make preperations. Zoe has been released to come home for the services, she and Elmer are driving home. Zoe does need to be back in Memphis by Monday. Unfortunately Zoe has been fighting a nasty infection and her ANC has dropped to 800, she must now wear her mask at all times. Candyce's son-in-law and the grandkids,as well as my husband and myself, will head to Iowa tomorrow. I will return on Wednesday evening. The wake is Tuesday 4-8 at the Sunberg funeral home in Madrid, Iowa. The funeral is Wednesday. As Candyce has to help with her father, I am unsure when she will return. Please say extra prayers for Candyce and her family who already have so much to bear, also pray that her dear mother may be at peace in God's home, she was a dear lady. God Bless
Friday, July 25, 2003 7:26 PM CDT We have power and will move back to the RMH tomorrow-just in time for Candyce to return to the Great State of Illinois on Sunday.
Zoe is doing fine-we have had an easy Thursday and Friday-due to the temp. Seems to be a viral thing and she is doing fine. She is a bit of a stinker or acting VERY "queen" like. We have had a few swats and many time outs. She is furious that we have power but thinks that if we would just buy batteries or a new TV she could see cartoons. We are low on her list right now-for just NOT doing it!
Monday, the testing begins. We are hopeful that she will do fine and get the radiation or surgery done she will need and come home. Dr. Santana is hopeful-said maybe another month or less depending on the testing. Of course, we have been here long enough to know that things change with everyday-so I count on nothing.
We are very thankful that Morgan's mom sent us the Sloan Kettering information and I will be looking into that when I come home. They do not turn kids away and if we have to wrack up debt so be it-nothing is as priceless as Zoe.
An awesome group of catholic teens from PA came here this week to help out at the Target and RM Houses but due to the storm they could not do the work, so they planned and carried out Christmas in July at AutoZone Park. What a great time-it is right across from the Hotel we are all at.
We walked over to be greeted by elfs and Santa. They did crafts, made sundaes, played games and of course, got great gifts. The hospital did the Chistmas party on Monday and another gift. Well-that is why Santa visits St Jude Kids twice a year-they are special. Back to the teens-these kids held bake sales, Krispy Kreme sales, carwashes to do this for our kids-it restores your faith in the youth of today. Thanks to all of them.
Our thoughts and prayers are with Zoie's family as she continues to be in ICU on a venilator. Her one lung has been repaired but the second is still filling and they are worried about it collapsing as they said the Dr. said her little body may not take it. Yesterday was her parents, Travis and Chasity's, 10th anniversary. How awful to spend it like this. Please keep this special family in prayer. Tomorrow, a group of us Mom's are going to ICU to visit them-we have all been scared to do this. Please pray for us to have the strength to comfort and not to need them to comfort us.
Also, if you are on the bone marrow registry-I do not know how it works but Jessica needs a donor. Her family does not match. Elmer is being tested this week. This is her third round and the way mom talks-this is her only shot. Please if you want to help-let me know and I will let St. Jude know or whatever you need to do on your end-PLEASE DO!!!!!
Again, Please let the wonderful committee doing "Zoe's day in the Park" know if you want to purchase tickets or t-shirts or help in anyway. We were so touched to hear how many people are helping. Vicky is at 815-663-5437 or Bobbi at 815-664-2290. E-mail can go to Vanshak@insightbb.com. God Bless these people.
I have often said that "I want to go home" meaning Michigan, but I now know that home is SPRING VALLEY, IL"
AND I am blessed to be there!
We love you all!
Wednesday, July 23, 2003 7:02 PM CDT Sorry it has been so long since we could update. I arrived late Friday night and found everyone in great spirits and doing fine. I was sure glad to see Elmer and Zoe and all the kisses and hugs said the same for them. Her counts were high and we had nothing for the week-end and procedures to start testing on Monday.
While I know that they were glad to see me-they also knew I had Verucchi's food in the car. Zoe's first thing was to kiss me and then say "can I have some chicken." Bobbi had ordered the only foods that Zoe had asked for-polenta, Verucchi's chicken, and bruschetta. When they picked it up-it was donated. Thank You, Mary and family. You made Zoe very happy!
I filled them in on all the news from home and my new splatter-painted computer room and the great work that Dee, Bobbi, Vicky, Brandy, Sarah did. It is so bright. Suzi came and helped get my bedroom empty and ready for new paint and carpet. Cj was recruited also for repairs and carrying. Thanks one and all.
Saturday, my sisters, Joyce and Rhonda, and Brother-in-law Darrel arrived here in Memphis. We spent time just relaxing and went to Elvis's for supper. We hung at their hotel for the evening and put our feet in the pool. Sunday, we shopped and hung out for the day. Zoe was in heaven three of her royal subjects to fawn over her! We enjoyed being with them.
Joyce held a fund-raiser at the rehab center and her beauty shop and brought in a nice amount. We were just stunned by the kindness of people towards our family. How wonderful that people in Boone IA wanted to help Zoe. We are so thankful and a BIG Thanks to Joyce for all her work. Sisters are such a blessing.
Monday-we went for procedures and Elmer gave her lick of a sucker and we got SENT HOME! NPO means just that. No licks, no water, no nothing except for PUDDING for her med's. Go figure that! Pudding -yes-licks no! We spent the day shopping and seeing more of the family who had went to GRACELAND!
Then the non-tornado hit-Tuesday at about 7am. Winds of 90 miles an hour. All power, cable, phones are gone. Elmer and Zoe had gone for triage and were walking when it blew up. They were soaked and of course, sent home again due to no power. The trees were down over the major streets, we could not communicate other than by cellphone. Joyce and crew were at the hotel in the same boat. We all just stayed put.
370,000 homes out of power!
Today-we still had no power, phone and cable. Memphis did get St Jude up, heard on the radio it was the first thing on the list, and we had triage and bone marrow aspiration due but we found Zoe with a temp of 101.5 and so of course, after some med's- we went- you guessed it-back to the RMH where we were told that we must get rid of all our food in the fridge and freezer and any perishables in our room and we were going to hotels until power is restored. They figure 3-5 days. Thank God, the Radisson had generators! Joyce and crew left for Iowa since they had no power at their hotel and no place to stay. We shed a few tears as they left but we are so glad that they came.
Zoe is still with a temp and will have to wait to start testing Monday. We will have triage tomorrow and that will show us where we are at. Her blood counts are great but she is having tv withdrawals! We will keep you posted.
Please keep all of the St Jude families in Prayer esp litte Zoie, who has liver damage from the chemo and, had to get a drug approved from the FDA to use. It came from England and was not in use here. She is in ICU and her family is doing as well as they can. Zac has gone home with hospice and his family is devestated. Noah, who suffered from cancer and CP, has had his family decide to end treatment. It was just too much for his little body. So much heartbreak!
I heard today that my fellow Michigander-Dr. McAllister in Peoria is sick-I know it is because he misses me! Please keep my friend in prayer.
For those of you who helped with the St Jude fundraiser that we sent pleas out for-The Kreckman and Wolsfeld families raised-are you ready-$25,000-Yes-that is three Zeros-for St. Jude. God Bless each and every one of you who helped is in any way. The run is next week-end as is Relay for Life where they are having a ceremony for Zoe and Maddie McFaddin.
We have been told that many wonderful people are planning "zoe's day in the park" fundrasier for Sept 13, in Spring Valley. Words can never express our gratitude to all involved.
The Lord knows just how much we love each and everyone of you -our strength and caregivers! This fight will continue for a long time-we could not do it with out y'all! I know you will each be blessed.
Love, Elmer, Candyce and Zoe
Wednesday, July 16, 2003 9:17 AM CDT Hope you all enjoyed the new photos. I am planning a collage as choosing three from so many wonderful shots was just too hard.
Zoe is doing great. Her ANC is over 1000 and she has had no blood products since the week-end. I am truly amazed. I am sure she is happier than we are about that. I have been told by all that her "spirit" or "attitude" is still obvious to everyone. It is amazing after all that she as been through that she is still our "spitfire". I have been told recently that she is more like me everyday-that concerns some but hey-what can I say?
Her new favorite saying is "Girls Rule-Boys Drool" . I do not know who taught her that (lol) and the "girls got to college to get more knowledge-boys go to jupiter to get more stupider." Now I did not say these were true or funny or even, nice but she roars when she says them to PAPA. I am so amazed by cancer children-while we are falling apart they are making their own fun! She truly loves living at the RMH and having some freedom.
My week-end in Michigan was great and the weather was PERFECT!!! We rode dune buggies, took a boat cruise on Lake Michigan, and brought home enough beach sand for the next year. The kids had a great time and Bobbi and Cj sure helped, the kids loved having them there.
Yesterday, I went to Peoria and saw the clinic staff-minus Zoe's "garbage lady" and Dr Saving. Camp COCo is going on for the kids so they were all out there. I did see Val, Mrs. P, Kathy, Marie, Ruth, and Sandy along with my crazy, Dr. MaCallister. It was wondeful to see them and I carried away such good feelings. I can't wait to see them on a regular basis.
I met baby Jessica and her mom yesterday. What a precious child. I shared my story and could see a lot of the emotions I felt, in Mom. She was so trying not to cry and I said I remembered going to clinic and trying so hard to be brave the first time. Then I went to the bathroom -slid to the floor and cried until I was sick. I told her that the the gut-wrenching feeling ,like you just were kicked in the stomach, was going to last but you would get stronger. I told the truth, both good and bad. I also said to remember that you can ask for help and to accept it-something Val taught me. Mainly-ASK QUESTIONS-that is your child-you need to know. I don't care if they are repeat questions-ASK! I also shared a must for all Peoria moms-Dr. McCallister always carries Dark Chocolate in his pockets. I hoped I helped in a small way but I know it was good for me. Please keep this family in Prayer.
As always-we are so thankful for all of you and we love you.
Monday, July 14, 2003 4:09 PM CDT Zoe's counts are wonderful! Everything is up but the usual platlets and hemoglobin. Her ANC was 900! I guess when she was ready, it happened. She is eating and playing plus in a good mood. We are so happy.
She is still going to clinic for regular GCSF shots and she is not too excited about that but,I am sure that going to the medicine room for a few hours is better than living at the hospital.
The visit from home helped both of them considerably. Brandy stayed with her Dad and Zoe stayed two nights at the hotel. She was so excited to have Sandy, Amanda, and Maribeth there plus Brock and Corey. Brandy and her Dad had a wonderful visit and they ate at Elvis', I knew they would as the chocolate cake is to die for!
I was not happy about the treatment of Brock and Corey by the St. Jude media office. They could not be on the property with out one of the media reps and they could not get one for Sat. That included the Ronald McDonald House. I think that as parents we have the right to decide what kind of publicity we have for Zoe. I hear that Sunday and Monday were better. The local ALSAC office has been wonderful and we were sent a disc of the photo ops taken from them. When my scanner is up I have a few more to go on.
Bobbi, Cj, Sarah, Kevin, myself and The "grankids" went to Michigan this week-end. It was so nice to spend time with them. We took dune buggy rides,a boat cruise, and amusment ride things plus the beach and swimming. They had a blast. Tesah, Bobbi and I went to the local "fudge' mart in St. Joe and Tesah insisted that she buy PAPA and Zoe candy. Wrapped in pretty paper no less. She never asked for a thing for her or her brothers. Says a lot about how much this four-year-old misses them. Trev is just sad at times but adores CJ. Thank God for them. Cade is a giggle a minute, such a sensitive little four-year old. I think the youngest emotionally even if is is older than Tesah by 3 minutes.
I spoke with Jessica's mom today. Jessica is not Zoe's age but a mere 14 mons. It is my plan to visit tomorrow and see what I can do. I so hope I can be of help.
Please remember all the children in prayer and of course, their families. It is so important that we find a cure for these dreadful enemies of our children.
We love you all!
Monday, July 14, 2003 4:09 PM CDT Zoe's counts are wonderful! Everything is up but the usual platlets and hemoglobin. Her ANC was 900! I guess when she was ready, it happened. She is eating and playing plus in a good mood. We are so happy.
She is still going to clinic for regular GCSF shots and she is not too excited about that but,I am sure that going to the medicine room for a few hours is better than living at the hospital.
The visit from home helped both of them considerably. Brandy stayed with her Dad and Zoe stayed two nights at the hotel. She was so excited to have Sandy, Amanda, and Maribeth there plus Brock and Corey. Brandy and her Dad had a wonderful visit and they ate at Elvis', I knew they would as the chocolate cake is to die for!
I was not happy about the treatment of Brock and Corey by the St. Jude media office. They could not be on the property with out one of the media reps and they could not get one for Sat. That included the Ronald McDonald House. I think that as parents we have the right to decide what kind of publicity we have for Zoe. I hear that Sunday and Monday were better. The local ALSAC office has been wonderful and we were sent a disc of the photo ops taken from them. I am posting a few today. When my scanner is up I have a few more to go on.
Bobbi, Cj, Sarah, Kevin, myself and The "grankids" went to Michigan this week-end. It was so nice to spend time with them. We took dune buggy rides,a boat cruise, and amusment ride things plus the beach and swimming. They had a blast. Tesah, Bobbi and I went to the local "fudge' mart in St. Joe and Tesah insisted that she buy PAPA and Zoe candy. Wrapped in pretty paper no less. She never asked for a thing for her or her brothers. Says a lot about how much this four-year-old misses them. Trev is just sad at times but adores CJ. Thank God for them. Cade is a giggle a minute, such a sensitive little four-year old. I think the youngest emotionally even if is is older than Tesah by 3 minutes.
I spoke with Jessica's mom today. Jessica is not Zoe's age but a mere 14 mons. It is my plan to visit tomorrow and see what I can do. I so hope I can be of help.
Please remember all the children in prayer and of course, their families. It is so important that we find a cure for these dreadful enemies of our children.
We love you all!
Friday, July 11, 2003 1:25 PM CDT WE HAVE BIGGIE NEWS! Zoe has an ANC of 300-that's right-300!!! And she is going back to RMH!!!! We are so happy and we are so hoping it last. While we have an ANC-her WBC went to 500 and her stain plate is 100. Needless to say we are shocked as they told us that it had to be above 500 for 3 days, but sadly there is many kids and beds are needed. So back to the RMH she goes!!!! We think they must evaluate each case and give the normal way things should proceed. They said she is strong and doing well, eating and doing what she needs to do, so we are glad that they are sure enough to send her back. She will need to go to St Jude everyday for blood work and to the medicine room everyday for GCSF and and other- meds but then they are free to roam! She will need her "I can't Breath" mask but that will be part of her for at least another 20 or more days and then when in big groups!!
Elmer sounds so liberated! He was packing as fast as he could. Not fast enough for Zoe-who kept saying "lets go PAPA" Now how many times as she heard "let's go Zoe" Paybacks are a.... you know! Of course she has been in the hospital for 26 days so she is ready to move on! He said it was like a big weight was lifted off him. I am so glad for them.
The angels, Sandy, Amanda P, Brandy and Maribeth will be so shocked. They are on their way and should arrive around 5:30. Zoe will be so happy to wander with them. I can't wait to announce it to them. It will make their day!
I heard today that we have a new Peoria child with neuroblastoma. Her name is Jessica and please remember her in your prayers and well as her family. It is a very very hard time, as many of us know, those intial few weeks.
Spoke with Val and Kathy from Peoria today. I can not tell you how wonderful it was to hear their voices. God Bless those people! We sure miss them.
I will be taking Brandy's kids for the week-end and we are headed to Michigan. So next update will be Sunday.
We love you all and keep those prayers coming! Thanks!
Thursday, July 10, 2003 2:37 PM CDT We are a bit disappointed as Zoe's ANC remains at 100. Her White count rose but her red, platelets, and hemoglobin have all fallen again. They were so positive that she would be over 500 this week and getting out. Obviously, they were wrong. Doctor has decided to hold off giving her platlets and blood until tomorrow in hopes that she will create her own. Please pray that she does.
Elmer tells me she is in good spirits and feeling great. She is eating and playing and other than the blood counts she is ok. A pistol really-but those of us that know Zoe-know that is a good sign.
The group of reporters and Maribeth, Amanda P, Sandy and Brandy will depart tomorrow at 9am. They are so excited but I am sure that she will be bursting when they walk in. It will be like a breath of fresh air.
For all the locals-I have rooms to paint and carpets to tear out-so she comes home to a germ-free enviroment. I could use help-so please call if you have some free time.
Please continue the prayers for her and all of our children and their families.
We love you all!
Tuesday, July 8, 2003 9:19 PM CDT We have an ANC of 100 and she is eating like a "chow hound". Now if we can hold on to the blood count-we will be on our way. Her white blood cells and red were still low but that is ok. She did not have to any blood products today-so we feel good about that.
What she did need, however, was a BATH! Seems that she was able to disconnect from her IV for awhile today and she went to child life where she painted with straws, and syringes. She was a mess! It was so funny-Elmer said it was on her feet hands, and she was so excited to be playing and pushed the paint thru the syringe like she does her flushes. Kind of like "flubber" day at Peoria Clinic!
We are so hopeful that counts will be better tomorrow. Please make that your prayer not only for Zoe but also for the many many other families that are waiting for the same
results.
Jake at www.caringbridge.org/nc/hopefor is having a VERY painful time with his antibody injections and we ask that you pray for him and every other child who is undergoing this treatment. It is painful, expensive and tiring so not only do parents worry about the child but often the expense-but parents WILL DO what they need to do to save their child and spare no expense.
Trey www.caringbridge.org/va/trey is heading out to try the injections in hopes they will erase the cancer they have found on his leg, needs prayer also. Trey's grandma writes such nice things to Zoe. I know she is a remarkable person who worries not only about her grandson and daughter do what they need to but is so supportive of many of us.
One last prayer request-please rememember all of our old friends in Peoria and the staff there as well. We started this journey with them and we miss them. I love seeing an e-mail from any of them. It is also so rewarding when the families stop by when they are in Memphis and we see the progress the kids are making. To bad the staff can't go to Memphis for a visit. I know that Zoe needs a new garbage lady-no one is as good as Sue!
We love you all.
Monday, July 7, 2003 7:15 PM CDT It was a hard day all around as we left Zoe and Papa in Memphis. Sarah and I started the procession at 8:30am and there was plenty of tears. It was so hard to leave Elmer and Zoe and it was hard for them to let us go. Unless you have left love ones at a diffcult time-it is hard to explain. You know you have to but you can not imagine how to live day to day without your spouse and child. Elmer and I miss each other and sharing the moments both up and down and Sarah misses Dad. Zoe misses the family and "TEBOR" or Trev-her 7 year old cousin. This is the hardest thing Elmer and I have ever had to do.
The VanSchaicks left about 12:30pm and Elmer said it was a repeat of the morning scene. Tears and hugs, hugs and tears. Bobbi was so amazing in her care of Zoe and in her understanding of Elmer and I. We spent a wonderful two weeks and Bobbi and then Sarah, CJ and Corey helped us in so many ways. You are all just so important to Zoe and us. We will never be able to repay you. We love you .
Zoe's counts were not much better today. No ANC and still .2 white count. She needed platelets again today. The doctor said she may need the full twenty one days for engraphment.
She was able to be unhooked from the IV pump today for a little while so she and PAPA went to the playroom and spent some time. She also had speech therapy and physical therapy. Elmer said she ate really well and was drinking plenty. He did ask the doctor about taking her off the fluid line but he said no-maybe later in the week.
She looked so adorable yesterday in her ballerina outfit. The Uribi's and Jason VanSchaick and his fiancee, Jenny, sent her a complete tutu, leotard, tights and toe shoes to wear. Every nurse in the hospital came to see it and she even joined a picnic they were having in the lounge. She did a few twirls for us and dance steps. I will post the pictures when I get them.
She will be awaiting Marybeth, Amanda, Brandy,Sandy and Amanda P's visit on Friday. Of course, she will enjoy the visit from the reporters, Brock and Corey.
Thanks to Suzi for cleaning so we came home to a clean house and my grandchildren, Tesah, Cade, and Trevor who took away my tears as they flew into my arms.
We are so blessed to have such a supporting family and group of friends. Praise be to God and St Jude.
We love you all.
Sunday, July 6, 2003 10:23 AM CDT Zoe is feeling much better. She still has no ANC and her white count is still .2 but her platelets and hemoglobin are holding steady. That is a big improvement since Zoe had to have transfusions 3 times since Monday.
She has been sleeping all night and doing a bit better on eating. They took her off the TPN (nutrition) and so she needs to eat and drink as much as possible. We are 13 days post-transplant and the Doctor said this morning he would expected her to be on target-which means her ANC to rise this week above 500 and she could come back to the RMH. That would put her 21 days-post and 28 days in hospital. Please pray for that to be the case.
Can any of us imagine being in the hospital for 28 days at age 4? Zoe wants to dance and run and sleep in her room. While she is the one who is sick-all the caregivers are ready to be done with the hospital. Elmer more than anyone.
This trip for me has had limited time at the hospital. MY job has been to keep Elmer out of the hosptial as much as possible. He refused for me to stay nights due to my medicine schedule and so he and Bobbi switched off. I did days with Bobbi and some day shifts with Elmer. Mostly, I drove to the places we ate or the stores we needed. I showed Bobbi some of the areas of Memphis-good and bad. Elmer finally said yesterday that he just needed one whole day and night so we did that.
Bobbi has been wonderful, way beyond the call of duty.She understood Elmer's need to get away and for us to be together. CJ, Corey and Sarah came on Thursday and the kids spent 1.5 nights and some time each day. That was wonderful. Zoe just loves Corey and Sarah. They are remarkable teens-played dolls and everything. This is what the Zoe's Angels and the newly formed, Zoe's hero's (males) are all about and why we are blessed beyond anyones imagination.
We leave early in the AM tomorrow. It will be hard for all of us, but on Friday, our daughter and Zoe's Godmother, Brandy, Angels MaryBeth, Amanda, and maybe Sandy will accompany Brock and Corey from the NEWSTRIBUNE here for a visit and follow-up story.
I will meet my sisters and my brother-in-law Darrel here on the 19th. By then-we should have a clear idea how much longer we will be here.
Thanks to all of you for the prayers, gifts, food, money and a BIG thank you to Elmer's fellow RONKEN workers for the huge box and gifts for us. It was so sweet and Elmer was so touched.
Please continue in prayer for all of our children for complete healing and most of all, comfort.
We love you all.
Friday, July 4, 2003 0:19 AM CDT UPDATED AT 10:45AM-JULY 4
As we say at home-take the good with the bad. Yesterday Zoe had a blood count and an ANC of 100!!!!!!!!!! We were all surprised and thrilled. We were on our way but today, she has bottomed out meaning low blood counts and back to 0 ANC. She will be getting blood and platelets again today
She ran a slight temp today and was still not eating as much as we would like (except the reeses cups-Grandpa&Grandma Marland sent) but she is doing ok. She even threw a "I want it my way" fit and got a MAMA'S way swat. So I think she is on the road to the RMH.
She has been decked out in red, white and blue thanks to Sadie and the Sarvers, plus Old Navy. We started early and she looked adorable. Hopefully she will be able to see the fireworks on the river from the entry hall or her window.
Zoe was thrilled to see Aunt Sarah, Corey and Uncle CJ arrive tonight. Elmer and I were glad to see our "baby" and I know Bobbi was glad to see her family. Elmer and Zoe had not seen Sarah in 42 days and they were so excited. It was a touching reunion.
I took Corey and Sarah to Beale Street tonight and it was fun . We heard some great jazz and blues and ate wonderful pecan pie. Tomorrow we will spend with Zoe and papa.
It was been wonderful being here these last 17 days and I hate to leave on Monday. Bobbi has been so terrific and Zoe has loved having her here. They have bonded and shared so much and we have made so many memories to take with us. It will certainly be hard to go for all concerned.
This morning a wonderful lady that Elmer met at the Zoo-delivered some more yummy food. We are so thankful for Sandy and her friend Heather-who lost a child to neuroblastoma-that they are so caring as to take care of strangers. Sandy calls about every ten days and delivers meals to eat and some to freeze. I know she will be blessed for doing this.
Please continue to pray for all of our children battling the various forms of cancer. There are so many and St.Jude is over-flowing. We thank God every day for Danny Thomas and his vision. What a tribute to St.Jude.
God Bless all of you and we love you.
HAPPY FOURTH!!!!!!!!!!!
Tuesday, July 1, 2003 7:14 PM CDT Zoe is feeling much better today but still complaining of a backache, tummy, and head. She is getting morphine and all the usual. Her counts are still low and ANC 0.
She did eat cereal this morning and at noon a hot dog but did not eat a thing the rest of the day. We tried to get her to take some food tonight but she did not finish her cocoa puffs.
Zoe and PAPA took a few turns around the hall today in a small foot car. She was tired afterward and according to Her Royal Highness-her mask makes her not "breathe" and it is "killing" her. She is too young to understand that if she DOES NOT wear it-she could catch something and die.
The doctor did say she needed to take a few walks around the ward as the chest is raspy. She needs to move those fluids and not let them settle.
It is our hope to have her out of here two weeks from yesterday. That gives her 28 days in the hospital. We would love it if her ANC could move up over 1000 and get her out quicker. Then probably another 3 weeks at Ronald McDonald house. Then maybe home. Due to high numbers they have been sending the kids home then bringing them back every two weeks for radiation. She may not need it but before we started they expected to do it or surgery. It would be our prayer that we need neither. Of course, all this is just what "WE" want or hope for.
Please keep all of our cancer families in prayer. Without friends and family-most of us could not make it. We know that we could not. Your prayers and efforts on our behalf is something we will never forget.
We love you all.
Monday, June 30, 2003 8:43 PM CDT While we did not get an apology from the nurse-we know longer have him and we let his supervisor know that we will not tolerate that kind of behaviour. Zoe's comfort and health are our first concerns.
Zoe she stated the downhill slide from the transplant. She is in pain both tummy and head, she is throwing up and has a fever. All expcted but still upsetting to all. It is Bobbi's night at the hospital but I am wating to see if we need to go back. She has been given morphine, benadryl, and advan so we will see how the night goes. She still has no ANC and her other counts are at very low level as expected. she also needed platelets again today. Her appetite is not the best but she is hanging in there. I said her little body looks dirty (except her face)from the red and now brown effects of chemo. Her hair stubble is still there but we expect to lose that soon.
Anyone who knows Zoe knows she is not in best of moods-not that we can blame her. Her skin hurt tonight but Cam and Hub Sarver had sent a box with some lotion in it and she loved the pretty scent and said it felt good. THANKS TO THE SARVERS FOR DECKING HER ROOM AND HER OUT FOR THE FOURTH OF JULY!
Bobbi has been wonderful and we have had a good visit. Bobbi had a migraine yesterday and I feel bad that she is in the room tonight but she said she was doing it. Never argue with a volunteer!
Sarah, Corey, and CJ are headed down on Thursday. We will be excited to see our baby (16) and Bobbi's family. We will return home on Monday.
LOVE TO ALL.
Sunday, June 29, 2003 2:32 PM CDT Zoe is feeling fairly good. She is not all that excited about food but eats when we put it in front of her. Her blood counts are still low and her ANC is 0. She is on antibiotics and had blood and platelets yesterday.
We had an incident this morning that left everyone VERY upset. The 7pm-7am nurse decided at 6am that Zoe had to get up and go to the bathroom. She had urninated last at 11:40pm and he felt like this was too long not to go. We had never had a nurse tell us this was NOT ok. Bobbi was the one there and she explained that Zoe was not one to wake up in good spirits and that she had had a rough time getting to sleep-so lets not wake her. The nurse insisted and it was not pretty. He then reached around her and took her by the back to make her move and she was HOSTILE!! Zoe threw a major fit and then the nurse left and made Bobbi continue this scene alone. We are SO SO MAD!!!!!!!!! Considering her history and her tramua of abuse prior to living with us-which is documented on her chart-she was very frightened and mad. He then went and let everyone know what a stinker she was!
Bobbi called us and we called the new nurse who assured us
1)there was no need for this as no test were scheduled
2)there was no protocol for this
3)We let a sleeping child sleep esp at 6am.
The Doctor concurred with the above. So I feel we are right.
We have spent a good amount of time in the hospital in the last year-this has never happened before.
We did speak with the nursing supervisor and she was like-we will have to see exactly what happened and they could not promise that he would not be back. Elmer is now talking to someone else.
Maybe we are being over-protective but we feel like she has been through hell and does not need anymore trauma.
Memphis is hot and we miss home. The coming week does promise any cool weather. The food, however, has been GREAT! The churches here are wonderful about feeding the families on the week-end and it is like a feast. Southern hospitality at its best.
Take care. Love to all.
Thursday, June 26, 2003 10:36 AM CDT Our third day post-transplant and except for the stomach pains starting, she is in good spirits and playing in her room. She is eating and keeping it all down. We are aware that this will not continue but we are so thankful for the good days.
Zoe's rash is peeling and bothering her less. Her stools are much more solid .and that has eased her pain quite a bit.
The skin is still red but that is normal
Blood counts are still ANC-0/WBC-0/RBC 2.5/ and they are giving her lipids and other meds to help. Always has fluids running into her. Zoe is retaining fluid so she is on a water pill.
While we are doing ok for the moment-one of our RMH families is leaving for home today with hospice. It broke my heart to hear that St Jude had done all that they could. Oh, but for the grace of God. I have to tell you that when we first arrived here-Zach and his family were considered rude and angry-nobody wanted to associate with them. One night I was in the computer room with them and struck up a conversation with MoM. Zach was being a stinker and very mean to her. I sat back and thought how angry this little boy was and how devestated this mom was. I have made a point of speaking with them all the time. Today, when Bobbi and I were on the shuttle to the hospital and she and her husband told me they were leaving-and it was sad but what could they do. I could all but hide the tears. I think the lesson here is that-the way people act may be out of hurt, fear, anger and we have to try to see beyond that.
Also remember in prayer-little Zoie and her family. She is in the post-transplant phase and in much pain and VERY sick.
THE BESTEST NEWS: BABY POZZI WAS BORN LAST NIGHT-HAPPY AND HEALTHY. This family had a long (15 years) wait for this child and we are so, so happy for Rob and Joanne. God Bless them. I can not wait to see the little one.
Love to all and Amber, we will be calling for you to visit!
Tuesday, June 24, 2003 11:16 AM CDT One day post-transplant-ANC 0/white blood-0/ red blood- 4.3/platelets-o. All what was expected.
The transplant was a very simple procedure-looked like a transfusion, it was warmed and put in through her line. She slept the whole time. Praise God-no throwing up or any other reaction yet. It took all of about 10 minutes. You so look forward to this milestone and it is over so quickly. You think-"this may save my child's life-WOW."
Zoe's fever is down, her bottom is better and her spirit is good. Her skin is beginning to peel from the chemo and she is not eating. Her mouth sores are beginning and she does complain about them. They are keepin up with her med's so she does rest.
They tell us she will bottom out in about 7-10 days. We are seeing that with the other Zoie as she had her transplant 6 days ago and is very ill. We are glad that the out internet families have told us what to expect. We are coping.
The schedule here is that Bobbi and Elmer take turns on the night shifts. We all go out to eat one meal and I stay during the days. Usually we try to get out everyday and do something-even if it is just sightseeing or doing shopping.
We miss home and have decorated our room at RMH and the hosptial with pictures and cards from everyone. Thanks one and all.
Take care and continue in prayer for all our little ones and their families.
Love to all.
Sunday, June 22, 2003 11:18 AM CDT Bobbi and I arrived on Friday evening to find Zoe running a high temp and covered with a itch rash that has discolored her. Her temp was so high at one point that they packed her in ice. The diarrhea was so bad that her bottom was raw and she could not move without filling her pants. She cried and scratched way too much. Had not ate and was not drinking. Definetly, different than the happy child I had left two weeks earlier.
Elmer had shaved his beard and was VERY exhausted and emotional. His eyes welled up with tears when we walked in but he was determined to be Mr. "I am ok." After a brief visit -Bobbi said she would spend the night and we went to our room at the RMH.
After holding up for a bit-Elmer finally said that it was so hard her ANC was at 0-her counts were critically low, and she had a transfusion. He was tired and drained. He slept about 9 hours that night.
People at the RMH stopped Bobbi and I and said Elmer was exhausted and depressed and not eating-they had offered help but he had refused. We assured them we were taking over and he would rest.
Saturday- He insisted that we did some important shopping as she needed some robes and PJ's. She likes the silky ones as they feel best on her skin right now and then, Bobbi and I made him leave for dinner with us.
I have to say that people told us how "bad" Memphis is-but I would beg to differ. We went to the the Spaghetti Wearhouse last night and the general manager stopped by to chat and found that we are both from Michigan. We lived about 30 miles apart and his grandparents had a cottage at near where I lived in Upper Michigan. To make a long story short and he picked up the whole tab and gave us his card in case we needed anything.
Today-Her temp is up, her stools have stopped but her mouth is hurting and they ordered morphine. She still won't eat and her anc is still 0. She will not drink. They are having sleeping most of the day.
I will try and update after the transplant tomorrow or on Tuesday. Please pray for us all to have the strength to do what is best and wisdom for the dr's to do what is right.
Thank for all the cards and gifts, money, food boxes both here and at home. Sarah is doing a great job on the home front and we are very proud of her.
God Bless-we love you.
Thursday, June 19, 2003 8:36 PM CDT Zoe's temp was over 103 and she is covered with a chemo induced rash. She is very uncomfortable and cranky. Elmer has been slathering bendyrl cream on her and she is getting the liquid bendryl to keep the itch down.
Elmer said her eating was off and her blood counts were down. They drew blood again tonight to see if there was something going on besides the chemo reaction. We knew she had a sinus infection but they say that a fever with this chemo is normal and they are giving her tylnol for it.
Kristen and Ginny from home (Mendota) stopped by today at St Jude. Due to the fever they could not go in but the girls waved and smiled through the glass. Elmer is so impressed that the clinic folks are stopping by and I reminded him that clinic people were family.
Kristen told Elmer that the joint letter we sent out has raised almost $1600. dollars for St Jude. We are thrilled and we have checks here and will get them to Kristen upping the total by 500+. Kristen runs the race from Memphis to Peoria at the end of the month. GO KRISTEN!
We are leaving tomorrow morning between 10/11 for Memphis. I can not wait to see my baby and my husband. I know that those of you who have lived this life-know the tremendous guilt you feel not being there and then the guilt of not being home with your other children. Thanks to Angel Bobbi for going with me.
GOOD NEWS From Baby Noah-he is doing so much better and we are so glad!
Please pray for RachelJOy and Daniel who are having a tough time right now.
Please keep all the families and kids in your heart and prayers! God may not answer prayer the way WE want but in His own time and His own way.
God Bless You & Love to all.
Wednesday, June 18, 2003 5:26 PM CDT Zoe is holding her own-she was eating a grilled cheese (of course, Cheese) and wanting a bald barbie. I told her I would look but I doubt there was such a thing. Mattle should make a special edition bald barbie and donate the proceeds to Childhood Cancer research! Somebody get on that-LOL!
Her fever was down today and the antibiotics seem to be working. Her chemo went well with no throwing up (so far) and her blood levels while low they were not critical. We are not silly enough to think that all the positives will remain. One Day at A Time.
Mari Beth brought pictures in from Memphis and they were wonderful-I can't wait to go back and see my husband and child.
Here on the homefront the broken dryer was fixed by CJ VanSchaick and saved me a few hundred dollars, the light fixture fixed by the same wonderful man, and Bonnie and Phil have said they were now in charge of the lawn. Is it not amazing how God answers prayer!
People have been so kind. Everywhere I went today in our town of 5,000, people stopped to inquire about little Zoe and to tell me they will remember us in prayer. We are so forunate to be in this community and have people care enough to say so.
I know I have said before that every family feels like it is a bad dream, surreal, when they hear that their child has cancer. Please consider visiting a few of the sites below or in our guest book. Leave a brief note in the guestbooks-it so helps to know others are thinking of you and praying for you. There is a site at www.chubbychica.com where you can adopt sites to visit on a regular basis You just click on the caringbridge icon and it will set you up. Your live will be changed because of these kids and their families.
One last request, when you say your prayers-please add Kim and Karl's family, not only does Kody have cancer but they see the Dr tomorrow about an older daughter who may have cancer. They are a terrific family-so upbeat and an inspiration to all of us.
God Bless You and We love you all!!!!!
Saturday, June 14, 2003 9:48 PM CDT Zoe's third day of chemo. She is feeling very tired and slept throughout today until Angels Maribeth and Amanda arrived. She was so excited. Woke up and had her cuddles. I am sure there were tears all around. Maribeth had a flat tire on the way and we were worried about her long wait but she and Amanda made it safe and sound.
Zoe has had little nausea but has had "poop" accidents. She had been given a stool softener to help her go but maybe it was too much. She hates pull-ups but has had to wear them right now She will wear them during the days of chemo and afterward transplant-just in case.
Elmer has been very upset in the medicine room (where the kids get chemo) as the Adavan that we know will help her has not been given unless he makes them do it. He told them that we have been doing 6 months of chemo and we know that the combo of Adavan, Zofran, and Bendyrl works to keep the vomiting and nausea at bay. Dr. Hale has ordered it but they say they hate to always use it. WELL-unless they want to clean up after her and they want Elmer in wild man mode-they best do what is going to keep her from being ill!
She is scheduled to enter the hospital for the serious chemo on Monday night. Tuesday will be a rest day (no chemo) and then the last 5 chemo's. Please pray that she tolerates them well.
No news on the "Hot Spot"-please continue in prayer that it is nothing.
There was a birthday party at the RMH tonight and a church brought in a wonderful supper. Elmer said Zoe wanted none of the food and just nibbled. No cake or ice cream either. She did enjoy the Pinata.
Elmer is at the hotel tonight and tomorrow night for some solid sleep and relaxation. He is really missing home and the other kids and feels terrible that we will not be here for Austin's 6th birthday-the third grandchild's birthday we have missed. He wants me there yesterday and I reminded him that Maribeth and Amanda will give him a break. What a remarkable man I married and what a great father and grandfather my children and grandchildren have.
My sister, Jan, my niece Whitney, and my parents are here in Illinois this week-end supporting me. My father has been so upset by all this happening to Zoe and been so supportive. I am so glad I could spend Father's Day with my first love.
Happy Father's Day to all you wonderful and remarkable dad's out there. I would like to thank Tony Ponsetti for giving us his wife and Daughter on Father's Day-and understanding that Zoe needs Maribeth and Amanda.
I would also like to thank Cj VanSchaick for doing many of my husbandly chores and being a "granddad" to my grandchildren who are so missing "Papa". I know that Brian Knutson and John McCormick would have loved to be relaxing today but thanks for helping out today with the safety day just like Elmer would have and supporting their wives.
Thank You to Doug Bernabei, Pat Herrmann, Doug Burcham, Jack Grant, Paul Dhesse, Kevin Sangston, Dave L and so many other Dads and Grandpas who came out to help with Child Safety Day proving once again that good fathers know how to show it but most of all how to LIVE it!
God Bless you and we love you!
Thursday, June 12, 2003 12:58 AM CDT Zoe received her first high-dose chemo today and was very "stoned" from the pre-chemo drugs. She did well but complained about being sick to her little tummy and having cramps. She had her blood levels checked and many were very low. We know that is to be expected and are not in a panic about it.
We are, however, VERY concerned about a "hot spot" in her leg. They have x-rayed it and scanned it and tomorrow they are testing it again. The Dr. told us they are very "curious" about what it is but will continue with the chemo. It has us worried. Please pray that it is nothing.
Zoe's spirits are good and she is still active. We know that will not last throughout the high-dose chemo. Mari-beth will bring the best out in her this week-end and she will be determined to play with her angel. It is great time for her to go visit and are so glad she can.
Elmer and I are struggling with me not being there and the lack of support there for him. We will be fine and figure it all out. I will leave next Friday night for the next few weeks. Bobbi is going to try and go with me. By that time Elmer will need a break.
Early this morning another CB child Colby last his battle with JMML cancer-please remember his family and drop them a line at www.caringbridge.org/pa/colby .
Also baby Noah's family has had a rough week and things are not good-if you can help through his site at
http://www.caringbridge.org/hi/noah-they could use the support.
Please continue your prayers for all of the cancer families and the children. If you get a chance visit some of the caringbridge pages in Zoe's guest book or the links at the bottom of the page. You will be truly amazed at just how much courage these children have and what the familes face each day.
We love you all!
Monday, June 9, 2003 11:14 PM CDT Elmer called tonight with some news he had hesitated to share before the twins birthday party-seems Zoe had problems breathing on the table today and the Dr's had to insert a tube. The Dr's came out and ask him how long this had been going on with her coughing and Elm said all her life. They think she may have an reactive airway. This is going to be looked into right away. Thank God-the Dr's are looking in to this and were on the ball.
The surgery went ok, other than the above. She woke up wanting MAMA and I was not there. She threw a true Zoe fit complete with hitting the nurse, slapping Papa, kicking and such. She refused to let them dress her and they finally just put her in the stroller and Elmer took her back to the Ronald Mcdonald House. He said he gave Zoe the pain med's and she slept the other med's off and was in a much better mood when she woke up. She is mainly eating corn dogs, cheese and more cheese. She does not care if it is cheese doodles or real cheese-she wants it. In her case, any calorie is a good calorie-so we are happy she is eating.
We had a great time when Angel Brenda brought Elm's car down this week-end. We went on a wonderful riverboat cruise. It was fabulous and free. They treated us like royalty. As we were leaving they said and I quote, "do you think she might like any other of the stuff in the store after she leaves-you can have it." This after all her food, a great captains hat (check out the pictures) and 4 5 by 7 photos. She asked for nothing and they kept laying it on her. I have said-she will never want to get well with everyone being so generous.
It was hard to watch Zoe and esp. Elmer cry as we drove away on Sunday. Brenda and I cried everytime we thought about it. I will go back on the 20th of June. She will be suprised when Angel Maribeth and Angel Amanda go down this week-end. Elmer will need the break, too.
Vicky and Maribeth are putting together a trip for all angels to visit in July. They are also ordering other color Angel shirts-so if you wish to go or want info on joining "team zoe" contact Vicky at 815-663-5437. They have the cost of the shirts and the dates.
Please keep those prayers going and Thank you all for the love and support. You will be rewarded in heaven.
Friday, June 6, 2003 7:07 PM CDT Thank God-we are done until Sunday pm with going to the hospital. Zoe completed her last test about 5:30 pm after having been there since 8:45am. It is along day for everyone. She could not eat for 8 hours and has been under sedation everyday this week so her schedule was off.
She has been a bit testy today and cranky-so we have tried to be calm and not cranky-not easy! On Monday-she will have surgery and then be back around 1pm. She is getting a double line implanted to start the chemo. This chemo is strong and will hopefully kill whatever cancer is left in her body. Zoe knows that she is having more chemo and said,"I hate throwing-up." We hope the drugs that have worked before will work during these first five rounds. The next 6 are in-hospital so Elmer will have a bit of help.
We are planning a nice day tomorrow before "MAMA" leaves and papa and Zoe are on their own. If the weather is good a ride on the River Boat-so many things are free to us that we will have to take advantage while we can. Tonight some lovey and very good southern ladies brought in desserts and games. Zoe is taking full advantage of both. Last seen she was riding on someones back and laughing.
For those who did not see the website in the last few days:.
We have completed all of our scans for the "HOT SPOTS" and we are scheduled to do transplant on June 23. She will start the heavy doses of chemo on the 12TH and then go in-hospital for the last doses on the 18th. Then after transplant-30 days in hospital.
They said today if all goes perfect, we could be home mid-September-that does not include radiation. If we have to do radiation then she will be here longer.
We will update on Monday-so everyone have a great week-end and remember all of the families and children fighting along side of us in prayer.
Thanks for all the cards, calls, gifts and such that have come our way-we are so very proud to have such wonderful friends who keep us in prayer and thoughts even though we are so far away.
Thursday, June 5, 2003 11:59 AM CDT We are done for today and have lots of news to share.
We have completed all of our scans for the "HOT SPOTS" and we are scheduled to do transplant on June 23. She will start the heavy doses of chemo on the 12TH and then go in-hospital for the last doses on the 18th. Then after transplant-30 days in hospital.
They said today if all goes perfect, we could be home mid-September-that does not include radiation. If we have to do radiation then she will be here longer.
She is in good spirtits and looking forward to a free day. Tomorrow will be a long one so we are so glad to have an afternoon to play a bit.
Brenda will be bringing Elmer's car down tomorrow and we plan to leave on Sunday. We are nervous but I will be back on the 21ST and stay through July 7 and then every other week-end or every-week-end depending on Elmer's stress level. I will be recruiting volunteers to ride the week-ends with me.
PLEASE continue with your prayers for all the children and their families. Many of the older children here are so angry and the parents are having such a hard time with not only the cancer but the attitudes. We have learned so much while we have been here and we hope that we have helped in some way the people we have grown close to-as they have helped us.
Take care-LOVE TO ALL!!!!!!
Wednesday, June 4, 2003 6:07 PM CDT Not to much to report today. She has had her 24hr NM\MIBG Scan and she did fine. She will do the 48 hour scan at 7:30am tommorrow. She did complain about her back hurting today, but that was understandable.
Zoe's blood work, after the harvest and then blood transfusion, looked good today. We were very glad to hear that and hopefully she will not need another transfusion. We also took her to physically therapy for evaluation and she was at the top of the charts-she does not need physical therapy-gee are we NOT surprised! She can run, jump, throw and walk as well as the next kid!
We are hoping for some quite time after clinic tomorrow and maybe take Memphis up on some of the fun things they offer.
She was thrilled at the boxes and cards she had waiting for her at the Ronald McDONALD HOUSE. She loved all packages and esp. the cheese from Uncle CJ AND Aunt Bobbi.
We hope all of you are well. We are looking forward to some of your visits and please keep the children and families in prayer-it's what keeps us going.
Tuesday, June 3, 2003 1:51 PM CDT I will keep yesterday's news here for a few days so everyone can share in our good news!
Her bone marrow was harvested today and she is very sore and tired. \Of course after 60 polks I would be too. Cranky is a better word- but she is on codine and had some morphine. She looks puffy but ok. We re done at clinic today so we are just vegging out!
Tomorrow she has her NM \mibg test. She will be asleep for that also.
Zoe loves to have any test as she gets to get in the treasure chest each time. Today alone, she got a life size walking doll with extra clothes, a barbie, and balls. Yesterday she got a, |My Little ponies gift set, 3 ft coloring book and a gift bag with so much in it that she was still pulling things out today. We will need an extra car to get all the stuff home.
Her spirits are very good and she is loving it here-so far. I am so glad but worry about when I leave. She wakes up calling for 'MAMA' and does not want papa until she calms down.
We will check in tomorrow-and thanks for your calls, cards, and gifts-we so need to here from you all-makes us feel like we are still in the loop!!!!!!!!
Monday- JUNE 2-2003 We have had good news today-her biopsies showed less than 10% cancer-we harvest her tomorrow! What that means is that she will have surgery and during that surgery they will stick her approximately 60 times and draw out her marrow. We have been warned that she will be sore and tired.
I know you are all wondering what will happen next, but this is what MAY happen as everyday and every test could change things. They will freeze her marrow and she will undergo test on every part of her body from top to bottom. That will take approx. two weeks. Then she will have 11 days of chemo and then transplant around the end of June or early July. She will be in the hospital for 30 days, give or take a few.
Two things that may change things are her MRI that she is undergoing today and the NM MIBG (a test that highlights more neruoblastoma areas). Zoe will be under sedation the next three days.
I have to tell you she is in VERY good spirits and it is always "look Mama at...". She loves it all. Their are so many gifts and activities that she never gets bored. Tired but not bored.
Yesterday we went to the Peabody hotel for the world famous duck walk-they come off the elevator march to the lobby fountain and swim all day. At 5pm- they march back to the hotel elevator for the night. She loved it-we liked the Starbucks and french bakery!
Candyce is coming home for a few weeks on Sunday. Those weeks will be filled with test so we thought it the best time for her to come before the transplant. It is so hard for us to be seperated at this time but we have to do what we have to do both there and here.
Please continue your prayers for all of the many kids that we have asked prayer for and the children and families of St. Jude. You will never know how lucky you are until you come to this hospital! It is an emotional rollercoaster for the adults here, as well as the, kids.
HAPPY Birthday tomorrow to Cade and Tesah-Grandma and PAPA miss you and wish they could be there. One of your presents should be delivered tomorrow. We LOVE you!!!!!!!!! We will have a party next Monday at Grandma's!!!!
We love you all!!
6:45pm-Zoe did well with the MRI except the sedation has made her very sick-a lot of throwing up but she is still saying she is ok.
Monday, June 2, 2003 2:56 PM CDT We have had good news today-her biopsies showed less than 10 ancer-we harvest her tomorrow! What that means is that she will have surgery and during that surgery they will stick her approximately 60 times and draw out her marrow. We have been warned that she will be sore and tired.
I know you are all wondering what will happen next, but this is what MAY happen as everyday and every test could change things. They will freeze her marrow and she will undergo test on every part of her body from top to bottom. That will take approx. two weeks. Then she will have 11 days of chemo and then transplant around the end of June or early July. She will be in the hospital for 30 days, give or take a few.
Two things that may change things are her MRI that she is undergoing today and the NM MIBG (a test that highlights more neruoblastoma areas). Zoe will be under sedation the next three days.
I have to tell you she is in VERY good spirits and it is always "look Mama at...". She loves it all. Their are so many gifts and activities that she never gets bored. Tired but not bored.
Yesterday we went to the Peabody hotel for the world famous duck walk-they come off the elevator march to the lobby fountain and swim all day. At 5pm- they march back to the hotel elevator for the night. She loved it-we liked the Starbucks and french bakery!
Candyce is coming home for a few weeks on Sunday. Those weeks will be filled with test so we thought it the best time for her to come before the transplant. It is so hard for us to be seperated at this time but we have to do what we have to do both there and here.
Please continue your prayers for all of the many kids that we have asked prayer for and the children and families of St. Jude. You will never know how lucky you are until you come to this hospital! It is an emotional rollercoaster for the adults here, as well as the, kids.
HAPPY Birthday tomorrow to Cade and Tesah-Grandma and PAPA miss you and wish they could be there. One of your presents should be delivered tomorrow. We LOVE you!!!!!!!!! We will have a party next Monday at Grandma's!!!!
We love you all!!
6:45pm-Zoe did well with the MRI except the sedation has made her very sick-a lot of throwing up but she is still saying she is ok.
Saturday, May 31, 2003 10:41 AM CDT Good Morning and I hope you are all cooler than we are. It is a bright, sunny day in Memphis about 80. Zoe is outside playing and enjoying the fresh air. I am doing laundry-ah the joys of being an adult!
We moved to the Ronald McDonald house yesterday and we are so glad to be moved to a "space" of our own. It is a huge house, clean and well decorated,VERY kid friendly. We have a large room, 2 beds, full bath, recliner, tv, vcr, Huge closet and a fair amount of floor space. Mail and such can be mailed to the address above under the intro-please remember that can be no stuffed animals due to germ factors. Pictures of friends and family and cards are welcome. Zoe would love to put things on her door like the other kids. We will also add our phone number so you can call us-it is a direct line to our room and we would love to hear from you!
Yesterday, we saw the speech teacher due to stuttering and verbal sounds that they think could be due to hearing loss. A tube is displaced in her left ear and we will see an ENT next week or the week after. The stuttering, they say, is normal when a child has had as much drama as Zoe has. They treat everthing here-so we are following the plan.
We have not heard anything on the bone marrow biopsies. However, last night the Bone Marrow Transplant clinic called and scheduled us for an appointment on Monday. I think we should take that as good news. Dr. Santanta was not in yesterday but will be today so we may hear.
Zoe is having a blast! Yesterday the Blue Angels and the NASCAR people were here. The week-end has free ball game tickets and other activities planned. We have stuff to do(like laundry) so we will see.
Please continue to pray for all our special friends and their caregivers.
Love to all
Thursday, May 29, 2003 5:18 PM CDT WOW-it has been a long day-even though it started at 1pm at clinic.
We saw Dr. Santana and Zoe's bone marrow was clean! We are now waiting for the biopsies which will be back tomorrow. All the Dr's believe that they will have less than 10% cancer as they did in Peoria. If not we will stay here through next week and then come home for two more rounds of chemo, if the test are clean we begin- TRANSPLANT!!!
Here's what is next:
Friday-we move to Ronald McDonald house-we will then have more access to computers.
Over the week-end we will be having some pre-transplant test and next week-a 3 day test that looks for the cancer in specific areas with iodine. We will also have an MRI plus we will have her cells harvested as we move towards the actual transplant.
Then it is 10 days of high chemo 1/2 per day and back to the room-then in hospital for more high dose chemo and. After a few days transplant and then approx. 28-30 days hospital.
After the transplant a few days then possible radiation.
Keep praying that all goes well.
Yesterday-Ducks unlimited were here with activities and tomorrow it is a fun fair. She is having a blast. We have enjoyed the time here.
Candyce will try to return home next week-end but we are kind of leary of this knowing how hard this will all be but know we have to do this to survive.
Thanks to all of you holding down the home fort-esp Vicky, Arlene, Brandy, and Bobbi.
We miss you all and send love to all of you.
Tuesday, May 27, 2003 3:44 PM CDT Our first day at the "big hospital"! We checked in yesterday and that was quick-today that was a different story! We arrived on time but so did the rest of the residents! We did their "clinic" quickly and they learned that Zoe works well as the "boss".
We then met Dr. Santana-no not Carlos, but very nice and very very detail minded. We liked him a great deal. We talked about what he expected to happen and then what we expected to happen-thank God we were on the same page.
Tomorrow he is repeating several test as he wants them done his way and she will have biopsies etc. We will then do other test that they have not done in Peoria-one that may keep us here awhile (next week).
The trip was great-she played and slept. We went to the arch in St. Louis and had a great time. We found my "STUCKYS"-ok so little things please me- and then just shopped along the way.
Memphis is a nice city and we have seen a lot since we got here. I did see Graceland from afar (25.00 per person) but now that she is sporting an arm band most things are free so we will do a bit of site seeing. Beale Street is awesome and I am sure that Corey and Brian will love the Gibson museum and store.
Ran into Marilyn and Arron from Peoria (he and Zoe have the same cancer) He has been here since Feb. has had his transplant and is doing fine.
Please keep all of these children in your prayers and remember we love you all.
Thursday, May 22, 2003 9:25 PM CDT We are packing and leaving on Saturday for the "Big Hospital" in Memphis. We are very uptight and nervous. Zoe keeps saying "Is this the day?" I am glad that she is excited.
She "graduated" from pre-school tonight and got quite a round of applause as she got her certificate. She beamed and there were not many dry eyes. The children are so considerate of her. They made a page for the scrapbook and it was very emotional to look at the pictures of her early in the year with her strawberry-blond hair-long and in pigtails. I did like the ones just after the 2nd chemo as they showed how far she has come and how much better she looks. Without Miss Mari-beth, It would have been so hard to see her through this but she and her staff, Irma, Donna and Susi plus Tamera, have been so wonderful. Zoe loves them and they have chronicled her life during this time with the best pictures!! Congradulations to Miss Mari-beth who was named "Teacher of the Year".
We are having her maternal great-grandparents and her Aunt Robin here tomorrow plus Aunt Bobbi and Uncle Cj and Corey, and maybe Aunt SUE SUE. Who knows who all will stop by. There will be pizza and soda and I am sure lots of tears.
Please keep us close in thought and prayer. I know our list just keeps growing but please pray for Ginny, David, Kelsey, Alexis, Melody, Lexi, Miranda, Morgan, Taylor,Issac, Trey, Nathan, Ayden, Katie,Cam and Sarah, plus all the others afflicted with cancer.
We love you all!!!!
Monday, May 19, 2003 4:53 PM CDT Dr Saving called today with the news that cancer was found in Zoe's bone marrow on the right side. Left side was clean. They do not feel it is in her best interest to remove the rest of the tumor at this time. We were very saddened by the news.
We will be heading off to Memphis on Saturday for evaluation for possible stem cell/radiation or other treatments that they feel will up her survival rate. We should be home next week with a clear idea of what will be in our future.
Zoe was very sorry today to leave her friends in Peoria and had to hug and kiss all the nurses and Dr. Saving, and Mrs Peral etc before she went to the "Big Hospital".
I, too, felt a pang as I realized just how much I like going to clinic twice a week to bond and be with the other parents who are on the same journey we are. I know we will be back next week but when she goes to Memphis for stem cell-what will I do without my "clinic fix"?
Please pray for us, as well as, Ginny, David, Kelsey, Alexis, Melody, Lexi, Miranda, Morgan, Taylor,Issac, Trey, Ayden, Katie,Cam and Sarah, plus all the others afflicted with cancer.
Friday, May 16, 2003 1:01 PM CDT Zoe had her bone marrow extracted today and a MRI. She sailed right through both of them and was very hungry when she woke up. Dr. Saving said the results would be back on Tuesday. Please pray that they are clean.
She will have the rest of her tumor removed next Wednesday and will be in the hospital for 2 or 3 days. The next week we are scheduled to head to Memphis. It is moving VERY quickly. That is ok with us. I like it to keep moving-it makes us feel like something is being done.
Thursday, she did a photo op at WEEK in Peoria with six other children. She was a ham as usual. We then stayed in a hotel as we needed to be at the hospital very early. She loved it!!!! Wanted to go to bed at 6pm. I think we may go to Motels more often.
Please lift Zoe, David, Lexi, Melanie, Kelsey, Issac, Ginny, Morgan, Cody, Alexis, Miranda and Katie plus so many more children fighting cancer, up in prayer. Prayer works and we need miracles for all these wonderful children!
Have a great week-end.
Tuesday, May 13, 2003 4:25 PM CDT We are SO happy!!!!!!!! Zoe's bone scan was normal and her neck ct scan showed that the remainder of the tumor had shrunk so much that it can now be removed. Praise God!
Blood counts were back to normal and they moved the biopsies and bone marrow test to this Friday. Surgery for the tumor removal is scheduled for next
week.
Following that-we are headed to Memphis for consideration for stem cell. Please keep that in your prayers. It is a procedure that we are unsure of but feel that so many of our friends have been through stem cell-our family's majority wants to try.
Zoe had a wonderful week-end. Great-Grandpa and Grandma Marland and Aunt Janice were here from Iowa and she was so pleased to see them. We had a great time.
Please continue to pray for Issac, Alexis, Miranda, David, Ginny, Morgan, Katie, Cody, Kelsey and so many others that are fighting this dreadful cancer.
Thank You to all of you for your support, prayers,love and most of all, the strength we have so needed. We are encouraged by this news, please pray for good results as we continue towards stem cell.
Wednesday, May 7, 2003 4:13 PM CDT Zoe had quite a long day at clinic yesterday. The blood counts were way down and we needed platelets and blood. We got platelets and go tomorrow for a transfusion. Our bone marrow test and biopsies have been pushed back for at least two weeks. Friday, she will have her bone and neck scans. Please pray for good results.
Zoe had a great day on Saturday at the early bird drawing for Kroger groceries. She looked wonderful and had so much fun! What a ham! She turned down a "reward" luncheon at Chucky Cheese for quiche at Cheddars!
Please continue to pray for all of our special friends, Kelsey, Alexis, Morgan, Katie, David, Issac, Miranda, and Ginny and for all the other children battling cancer.
Happy Mother's Day!!!!
Friday, May 2, 2003 3:43 PM CDT Just returned home from clinic and Zoe is doing well. She had such fun with 16-year old, David, who the children just love and 17 year old Sarah, a stem cell success story. They removed her portable IV and she did not need any blood products. Zoe is so upbeat and glad to have her backback gone so she can run.
We will have her bone, and neck scans next Friday. We are nervous but ready to hear what is next in her treatment.
Tomorrow we are doing some publicity in Peoria. She is drawing the early bird ticket for the Dream House fundraiser. She has a beautiful dress that "mica" Rosie has taken in and she has learned the "queen" wave. What a hoot.
Please continue to pray for our special "friends" Ginny, Kelsey, David, Alexis, Morgan, Katie, Miranda, Taylor, Samantha,Issac and those not known to us who are walking this same journey.
Take care.
Friday, May 2, 2003 3:43 PM CDT Just returned home from clinic and Zoe is doing well. They removed her portable IV and she did not need any blood products. Zoe is so upbeat and glad to have her backback gone so she can run.
We will have her bone, and neck scans next Friday. We are nervous but ready to hear what is next in her treatment.
Tomorrow we are doing some publicity in Peoria. She is drawing the early bird ticket for the Dream House fundraiser. She has a beautiful dress that "mica" Rosie has taken in and she has learned the "queen" wave. What a hoot.
Please continue to pray for all children known to us known to us who we are fighting along side.
Take care.
Sunday, April 27, 2003 8:38 PM CDT Zoe has just finished her last round of chemo. She is SO happy to be coming home in the morning,even if she will be on a portable IV machine We have been forewarned that the chemo may not have worked and stem cell may not be an option.
We are hoping that the test will show that the chemo did bring us to stem cell-otherwise, we do not know what we will do.
The next two weeks will be the hardest wait we have ever experienced.
Please pray for Zoe and Morgan,Katie, David, Samantha, Ginny, Alexis, and so many others that have the dreaded "C" word.
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