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Relapse....What's Ahead

Tuesday, February 01, 2000 at 09:38 PM (CST)

I took Jordyn to Childrens' today and we got some bad news, Jordyn has relapsed. We are going to take her to Walter Reed tomorrow and they will do a bone marrow biopsy and prehydrate her for chemo that will start on Thursday. On THursday she will also have a spinal tap (lp) to see if she also relapsed in her CNS. Please please pray that she didn't relapse in her CNS. Plain and simple we need all the prayers you can send up to God and Jesus Christ. This little girl is my life, and I cant lose her. Thank you for everything,and I will keep this page updated as often as possible. Again thank you for your prayers and love!

Wednesday, February 02, 2000 at 10:16 PM (CST)

Well, we don't have really any news, they didn't do the bone mnarrow biopsy today, they are going to do it and the LP (spinal tap) tomorrow morning, at 9 or 930. They did go ahead and give her the IVIG, though. They drew a CBC and here are her counts for today:
WBC: 54,000
-normal: 4,000-8,000
RBC: 2.80
Hemoglobin: 9.0
Crit: 25.4
Plateletts: 45,000

We don't know what we are going to do right now, we thought we would be starting chemo tomorrow, but right now that is on hold until we get the results back from the biopsy and lp.

All we can ask of you is to please pray for Jordyn. If you want to send your prayers via e-mail we are going to print them off and read all of them to Jordyn. I know that Jordyn has the world praying for her, I want to make sure she hears it from all of you. This is very difficult, we are looking to GOD, and we know that he will answer our prayers, look upon the Lord, and I know we will get the answer that we want and need.

Thank you, I just don't know what else to say.

Thursday, February 03, 2000 at 06:32 PM (CST)

I am sad to report that we didn't get the news we had prayed for, Jordyn only has a few weeks left with us here. Please pray that the Lord and our Savior Jesus Christ walk with us through these next few weeks. All we ask is that you pray for a miracle from God, he does give them. I can't think very well right now, I will update you more in the next few weeks, just keep praying that is all we can ask.
We are very thankful for all your love and support and ask that you continue to give that to us at this time. We are just thankful for the time we have been honored to have her here with us here on Earth, she will walk with us for eternity in heaven.

Monday, February 07, 2000 at 12:42 AM (CST)

Hi everyone,
We took Jordyn to Baltimores' Aquirium, and she really seemed to like it, they had a dolphin show, but she was getting very tired and was very ready to go by the end of the half hour show!
She was a little more tired today, but still had a good day. We are enjoying the time we have left with her and praying that the Lord gives us a miracle, so that we have many more years left. Right now, I would take more months! I am praying like never before, I know the Lord hears me, I just pray I get the answer I so desperatley want. I know you all are praying for Jordyn and I want to take this time to thank you all and to know that I have read all your e-mails, and we have printed them all of and will be reading them to Jordyn and saying them to the Lord again. I have to believe that he will answer our prayers and give us this miracle.
I hear Bill Gates likes to donate to charities, I pray he donates to the Leukemia society and helps find a cure for childhood AML leukemia. We must find a cure, too many of our future is losing it's battle to this disease.
I found out last night that Morgan Hanson who I have a link to on the main page, passed away, please go to her link and send her family and friends some much needed prayers. I believe her death was sudden and not expected. Also, Jade Pasley,2, passes away on Friday too. She also had AML and went through a BMT the day after Jordyn. She relapsed much sooner, in Jan. Her twin sister also had AML, but is remission, and she has an older brother Miles, please keep this family in your prayers.
Thank you for all your prayers, and keep praying for a miracle for our sweet girl.

Monday, February 07, 2000 at 07:25 PM (CST)

Well, we are happy to say that we are going to Kansas tomorrow!!!!! Make A Wish is sending us, and sending Chad,Jordyn, Mom, Dad, and me. We are very happy to be going so that everyone can see Jordyn.
For those of you in Kansas, friends are throwing Jordyn a Birthday Party at the EUM Church in Holton, from 5-8 pm. Everyone is invited to come and see Jordyn and celebrate her life with all of us, this is not a time for tears, so leave them at home, please, it's a time to celebrate her life and all that she means to us!
Please the one request we make, is NO PRESENTS! If you feel you must bring something, only bring her stickers or books, she loves both. This is very important to us, so please respect our request.
We also, ask that everyone give us time to be with family, so we ask no one come to Mom and Dads' house unless you have been requested to do so. We know that you all love Jordyn very, very much, and that is what the party is for.Tuesday evening and Wednesday is for family and the friends that we have already spoken with time to spend with Jordyn .We apperciate your understanding this. This is a very difficult time for us, obviously, and we are trying to make the most of it. Please if you feel the need to spend extra time with us, call first before coming over. You all have to rememeber that Jordyn gets tired easy and her immune system is not what we wish it would be, so if you do come to the party, you CAN NOT BE SICK!!!!! If you are I will ask you to leave.
Last but not least, we would like to send out a special thank you to Lorrie Proctor, for organizing the party and for just being such a wonderful friend. We have found out who our true friends are since Jordyns' dx, and I am happy to say that we have MANY friends and loved ones, THANK YOU ALL!
If I have left anyone out, I am sorry, know that you are in our hearts.
Please keep sending out your prayers, we read and print them all, you will never know how much they mean to us.
For those of you here in VA., we will be back Friday night, late, so for those of you wanted to make us meals and such we can set up a schedule, for all of you, you all are so kind for this. We love all of you.
Don't give up, we aren't GOD is powerful!

Saturday, February 12, 2000 at 11:01 AM (CST)

Hi everyone, well I didn't update while we were home in Kansas, but not because of any reason to worry! WE had a wonderful time at home, very busy!! We got there Tuesday night, and Jordyns' Great Grandpa and Grandma picked us up, we had dinner then went to mamma and pappas', and were met by Uncle Phil, or as Jordyn says Uncle Fool! :) For those of you who know Phil, guess what he loved it!And so did we!
On Wed Jordyn got to ride her beloved 4-wheeler! She rode it for almost 3 hours straight, and if any of you think it's imposssible, you don't know Jordyn! We all took turns taking her for rides. We had relatives come and see us on Wed., and we just enjoyed our day and time with everyone. Wed., evening the house got a little full with family, while Jordyn, Great Grandma Flewelling, and I went over to Uncle "Fools" to see his "new" house!
Thursday was nice, we had family pics taken by "Portraits By Kennedys", Matt took pics of Jordyns' great grandparents: Smith and Flewelling along with Grandma and Grandpa Flewelling, Uncle Phil and Aunt Misty, Chad, Jordyn and me. We should get the pics next week sometime, and I can tell you I am very excited on getting them back.
Matt and Kristen : Thank you from the bottom of our hearts, we will cherish these pictures for the rest of our lives.
Thursday night, Jordyn had her Birthday Party!!!! It was great! There was a pony, that Jordyn wouldn't ride, but would pet, a newborn puppy, and a ball car, that Jordyn loved. The Church was decorated in Pooh balloons and pink and green balloons! On the pink and Green balloons there was a desription of Jordyn and our address on the flip side of the card, we are hoping that when people find these they will send them back and we will see how far they floated. The flight of the balloons was the last of the events and it was very emotional and beautiful. Jordyn had 2 sheet cakes, Pooh Ice cream cake, and a Pooh Birthday cake! She loved blowing out her candles!!!! Grandpa had to re-lite the candles about 5 times.She recieved gifts which she enjoyed opening and we want to thank everyone who came to celebrate and who helped with the planning and decorating of the party!
We had a good morning Friday, "Uncle Terry" came up from Ft. Riley, and went to Tonganoxie with us to Great Grandparents Smiths' house for lunch before we left to come back to Virginia.
To Uncle Phil and Aunt Misty, we love you and miss you so much. Jordyn kept asking for you at different times.
Never Give up Hope and Prayers. God works in mysterious ways, and we only found out what they are once they happen. Jordyn is a strong little girl and an amazing one at that, so don't count her out quite yet!
We love all of you! I will update again in a day or two!
Also, today Chads' parents, Nana and Papa will be getting here along with Aunt Arica and Travis and Cassie. They will be staying with us for the next week. We will be going to get pictures with them while they are here! We hope to get some pictures of just Jordyn in this set.
I will update as things happen

Monday, February 14, 2000 at 06:14 PM (CST)

Well, I have good news about Jordyn. Last Monday, feb 7, Jordyns'WBC was 89,000. Her WBC count today is 10,000! Actually 9.9! We don't know if it was the HydroxyUrea that is working or if it is just the Lord working in his mysterious ways, either way we believe this is Gods' work and we are so thankful. Tomorrow we should know if her WBC are leukemic blasts or what.
We know that medically they do not want us to get our hope up, but I will say that The Lord is amazing and does things that no dr or human being can explain, and that is fine with me.
Jordyn is an amazing little girl, and we give her to the Lord and do with her as he wills to do. I know that anything is possible through GOD and I want all of you to believe that, NEVER lose faith!!!!! GOD is there, I hope that all of you that read this page are believers, and if not, I hope Jordyn makes you a believer.
Keep her in your prayers and keep sending her your love.

Thursday, February 17, 2000 at 10:36 AM (CST)

Hi well we went to WR yesterday and they drew another CBC, and things went well. Jordyn doesn't like going there anymore though! Can we blame her?
Well, her WBC is now 8,000! I am happy that they are down, even if the leukemia is still there, which they said it is, we still have more time with her, and that is wonderful! Jordyn is doing great, she is playing, smiling, eating good. She is just our little Jordyn!!!!! :)
We can feel your prayers going up for Jordyn, and the Lord hears all of us!
Please send up prayers for Jordyn and all of the other children who are fighting cancer and other blood diseases.
Look into yourself and you will find good, look into a childs eyes and you will find LOVE

Friday, February 18, 2000 at 03:10 PM (CST)

We took Jordyn into Walter Reed today, she needed plateletts, they were at 16. She is doing great! Her WBC is now at 6.8! We also found out, she is a canidate for the new clinical trial, for the drug CMA-676! She will have it at Childrens' where she had her BMT. We will call Dr. Dindorf on Monday to find out more about it. Chad and I feel this is what we should do, so we ask for your prayers that we are making the right choice.
Her crit/hemoglobin is 28/9, so it is still very good.
Keep sending out your prayers, they are being heard from the Lord and our Saviour, and we can feel the love from all of you.
Forgot to tell you, yesterday, we took Jordyn to the Zoo. Jordyn wasn't all that thrilled to be there until she saw the giraffs, then she loved it! There was a baby monkey, that Jordyn could have looked at all day long!!!!! It was a good day, fun and nice.

Sunday, February 20, 2000 at 08:33 PM (CST)

Hi everyone, no news on her "health", but we did just update her Photo Gallery! Please go check them out, they were all taken in Kansas while we were home for her Make A Wish Trip! She had a great time visiting!!!!! If you are afraid you missed the last update, which was on Friday, Feb. 18, 2000; please check out the history page! We will continue to keep you updated, as we are! Have a GREAT DAY and keep Praying for Jordyn!!!!!!
Keep the Faith, we are!

Wednesday, February 23, 2000 at 08:51 PM (CST)

Well, we took Jordyn in today to WR, and I got her counts. Her WBC is up to 31.6, which is not good, but we are going to put her back on the Hydroxy Urea everyday again, instead of every-other day! They believe that will bring them back down. Also, it looks like the new clinical trial of CMA-676, well it is going to be happening at Childrens' in DC, her transplant hospital, well, Jordyn is on the waiting list! We have a meeting with Dr.Dindorf next Tuesday, Feb 29, and we will find out more about it.
Keep the prayers coming, because Jordyn will still be needing them. Jordyn is obviously very special to us, and I know that she is special to all of you who view this page, please do not give up on her. She needs your strength too. Please send her all the POSITIVE VIBES you can. We do feel your love, and it is so amazing and powerful. The Lord hears when you call to him everyday and ask for his mercy on Jordyns' little body. I have a friend who asked what I would like her to pray for concerning Jordyn, if any of you need that question answered, I will give it to you. I pray that GOD takes the Leukemia out of Jordyn, and has mercy on her. I know that our God is a loving and merciful God, and that he is walking this road with us, I pray that he is holding us tightly and is allowing us to see his miracles through Jordyn and all the others who are struggling with this fight of the beast.
I know that our Savior Christ is holding my hand everyday, he is the reason why I make it everyday, and am able to be strong for Jordyn. I am not an amazing person, I am a Mommy.
Before Jordyn was dx,I would have thought anyone going through this as a parent was just above all others, and they are do not get me wrong, but I also know now that as a mother of a child with Cancer that you do these "amazing" things, because you have NO CHOICE! You do it because you love your child(ren). They are the AMAZING ones, they go through all of this and keep n going, with normally a smile on their face. They hardly ever complain, and they are so smart! Wow are these kids smart! If you have never came across one of these extroidanary kids, you are missing something so special! I wish I would have never been introduced to this life, but I can tell you that I have become a better person becasue of it. I have such a respect for the children, and adults who have to fight for their lives everyday. I wnt to THANK them for being so brave, and for teaching me that it's ok, to be human, but it's even greater to love!
No matter what happens with Jordyn, I am a better person because of her, and I think all of you are too. This little girl of not quite 2 years old, has touched more peoples lives, than some people do that die at 100! Isn't that amazing!
For those of you who are not fighting this beast with a spouce, child, or sibling, then thank your lucky stars! Thank God for the health of yourself and of you loved ones. Keep praying and NEVER GIVE UP!!!!!!

Sunday, February 27, 2000 at 04:42 PM (CST)

Well, first of all I want to wish my brother Phil or as Jordyn calls him, Uncle Fool, a Happy 22 Birthday!
Now on to the business of Jordyn! Friday morning, we drew her labs and her plateletts were at 18. That day we took my parents to the airport, who we miss greatly! And then that evening we went to friends house. We were looking at Jordyns' left eye, because the night before she had vomitted and broke a blood vessel, anyways, by Friday night, it was pretty bad! It had spread all around her eye! So we took her into WR, and her plateletts were at 12! So she got plateletts. We told them that we would not stay all night, so as soon as the plateletts were finished we left, we got home at 5am! So much for not staying the night, oh well we did come home and all go to bed in our bed!
Jordyn hates staying at the hospital, to say the least she wasn't happy when we got there and stayed for the amount of time we did!
Now she has the cold still and she has developed a cough, that we are listening to closely. We are a little worried that it could turn into pneumonia, and so we are going to see about getting an x-ray of her lungs tomorrow, when we go in to WR for her weekly check-up!
Tuesday, we go to Childrens' to discuss the clinical trial she is going to go through with CMA-676! We are praying this is what we have waited so long for. Of course her medical team has told us not to expect a miracle from it, but we have to keep up the FAITH! We know that it has been places in our laps for a reason, and maybe if will work for Jordyn. We will update Tuesday evening and let you know what is going to happen with it.
Well, please continue to pray for Jordyn, she needs your prayers and eveyone elses that you know! Please make sure you have everyone you kow add Jordyn to their prayer lists!
Thank you and God Bless All of You!
WE are not giving up yet, and will always keep our FAITH in GOD!

Monday, February 28, 2000 at 04:09 PM (CST)

Hi everyone, well our fear became reality today: Jordyn has pneumonia! She is at home, she is on an oral antibiotic for 5 days. She does seem to have perked up a little and is eating better than she has in 2 days!!
Her counts are as follows:
WBC:28.8, down from 49.9!
Crit: 22.6
hemoglobin:7.9
Plateletts:57
She will go back to WR Wed., and she will prob. get Red-packed blood cells= blood!
We go to Childrens' tomorrow and they will get some blood for her to get ready for the clinical trial that is supposed to start now March 6, but it's still a play-it-by-ear! She will have to have a bone marrow biopsy before the trial begins. We will also sit down and talk about everything and discuss any qustions that Chad and I have considering this!
Well, Jordyn is going to be added as a 4 child to the Make A Child Smile web-page, please go check it out Wed.! There will be a PoBox for people who want to send her cards and get well notes. Also, there will be a bio and picture.
just go to: www.Make A Child Smile.com
Keep sending out the prayers and look for another update tomorrow evening!