Remembering Jordyn on her 9th Birthday

I want to say thank you to each one of you that's praying for my friend and her family. Once they have the caringbridge site set up I'll share it with those who'd like to continue to keep track of them and pray for them. I'm sure some wouldn't even think that just letting Jillian go would be an option, but until you're in the shoes of a parent who's child has cancer, who's been through literally hell and back you just don't know. I had a friend who doesn't read my journal here say "I just couldn't be as strong as you are or Jessica". People let me tell you something, please don't ever say that stupid statement...do you think we GOT a CHOICE? It's not a choice...it's the way it is. When you become a parent you do what you have to for your children. If you think letting your child get pumped with poison (chemo..it is poison) you're wrong, it's horrifying. If you think leaving your child in a room to have TBI (total body irraditation) was easy, let me tell you I cried the whole time she was in there by herself. To know that they're putting radiation and chemicals in those little bodies that's supposed to HELP them, but that could harm you or even kill you is horrifying. No parent should have to do it, yet every single day 330 parents are told this is the choice they will have to make, or surgery that obviously could go anyway. EVERY DAY 330 children are dx with cancer. Doesn't sound like many...let it be one of your children and you'll realize just how many kids HAVE cancer. ONE child is too many, but tell me how many of YOU are up in arms? How many of YOU arecalling your senators and congressmen and saying We MUST have more funding? EVERY YEAR it goes up on a vote on how much to give NIH and how much of THAT is given to childhood cancer: I know there are prob. a good amount of you that give to St. Jude's, but there are HUNDREDS of other hospitals out there treating children and St. Jude's as wonderful as it is will only see children if they have NOT been treated at another hospital for their cancer. Trust me, when you're thrown into this world you want the best treatment, but you also have to jump quickly, and if you think you're brain is working at full speed to make the constant best decisions it's not. It's in SHOCK. Looking back I would not have ever taken Jordyn to St. Jude's, not because they're not excellent, but because Jordyn had the best treatment she could have gotten anywhere right where she was. I BEG you as a mother who today will be releasing balloons to HEAVEN instead of throwing a birthday party for her 9 yr old daughter...do SOMETHING. There are SO MANY organizations out there that are doing research to find better drugs, so many searching desperately for a CURE, it's not JUST NIH and it's not JUST St. Jude's. There's Curesearch.org, there's the leukemia/lymphoma society. If you want to help with Childhood Cancer DO NOT give your money to American Cancer Society...they give 1% of ALL their funding towards Childhood Cancer (I dislike them greatly and think for adults they're fine, but for children they're disgraceful).

I'm emotional today without a doubt. I miss my daughter. I miss her so much it hurts. My heart hurts, my head hurts, I want her HERE. I wish I could have woken her up this morning singing "Happy Birthday" to her, having her room decorated with balloons. I wish so many things, but they will NEVER be. I could have 100 children but I'll NEVER have Jordyn back. I love my kids and I'm thrilled about this baby that's growing in me, but it doesn't take away the pain that's in my heart for Jordyn. I know she's safe, she's with JESUS! I wish she'd never HAD cancer, but that's not our lives. This is. She DID have cancer. She did have a bone marrow transplant, and she did die. We don't get to give her hugs and kisses anymore. I don't get to sneak into her room and watch her sleep. I don't get to feel her soft hair next to my face.
I get so disgusted when I hear people talk so negatively about girls. "Boys are easier, girls are horrible when they're preteen and teenagers", this is normally mothers and I can imagine THEY were a joy at that age. Instead of focusing on the bad they need to focus on the blessing that GOD has given them. Girls or boys they're a blessing. Every single CHILD is a blessing.
You want to do something in memory for Jordyn? I challenge each of you parents out there today no matter how ugly your child was today, how sassy they were, how dirty they got, how anything that you would view as negative...to let it go for a moment and just HUG them. Just kiss them and just DROP TO YOU KNEES and THANK GOD he gave you that child in front of you. THANK HIM, because let me tell you...you DON'T deserve them. NONE of us deserve our children...but GOD gave them to us anyways! He gave us the honor and PRIVELEGE of them. I KNOW there are days where I am at my wits end with my kids, but we all need a reminder that it doesn't matter. Take them out for ice cream, take them to the park, let them pick what you're having for dinner or doing for the weekend. Why do you need to wait for their birthday to make the day special for them? Plant purple petunia's and tell them about my little girl and how much she LOVED purple petunia's and that she'd pick them and rub them on her face because they were so soft! Tell them how she'd stand and just touch the softness of them.
Let me tell you one big fact....Tomorrow is NOT promised for any of us, including our children.
Don't go to bed tonight without your child(ren) knowing how much they're loved and cherished. Pray with your children. Make sure you're teaching them about Jesus. (There is NO better gift than telling them about Jesus and how he died for THEM and that he LOVES them and that the ONLY WAY TO HEAVEN is through HIM).
I would LOVE to be able to do all these things with Jordyn today...but I can't. So I'll be doing them with my little boys while we remember Jordyn.

I want to say thank you to each one of you that's praying for my friend and her family. Once they have the caringbridge site set up I'll share it with those who'd like to continue to keep track of them and pray for them. I'm sure some wouldn't even think that just letting Jillian go would be an option, but until you're in the shoes of a parent who's child has cancer, who's been through literally hell and back you just don't know. I had a friend who doesn't read my journal here say "I just couldn't be as strong as you are or Jessica". People let me tell you something, please don't ever say that stupid statement...do you think we GOT a CHOICE? It's not a choice...it's the way it is. When you become a parent you do what you have to for your children. If you think letting your child get pumped with poison (chemo..it is poison) you're wrong, it's horrifying. If you think leaving your child in a room to have TBI (total body irraditation) was easy, let me tell you I cried the whole time she was in there by herself. To know that they're putting radiation and chemicals in those little bodies that's supposed to HELP them, but that could harm you or even kill you is horrifying. No parent should have to do it, yet every single day 330 parents are told this is the choice they will have to make, or surgery that obviously could go anyway. EVERY DAY 330 children are dx with cancer. Doesn't sound like many...let it be one of your children and you'll realize just how many kids HAVE cancer. ONE child is too many, but tell me how many of YOU are up in arms? How many of YOU arecalling your senators and congressmen and saying We MUST have more funding? EVERY YEAR it goes up on a vote on how much to give NIH and how much of THAT is given to childhood cancer: I know there are prob. a good amount of you that give to St. Jude's, but there are HUNDREDS of other hospitals out there treating children and St. Jude's as wonderful as it is will only see children if they have NOT been treated at another hospital for their cancer. Trust me, when you're thrown into this world you want the best treatment, but you also have to jump quickly, and if you think you're brain is working at full speed to make the constant best decisions it's not. It's in SHOCK. Looking back I would not have ever taken Jordyn to St. Jude's, not because they're not excellent, but because Jordyn had the best treatment she could have gotten anywhere right where she was. I BEG you as a mother who today will be releasing balloons to HEAVEN instead of throwing a birthday party for her 9 yr old daughter...do SOMETHING. There are SO MANY organizations out there that are doing research to find better drugs, so many searching desperately for a CURE, it's not JUST NIH and it's not JUST St. Jude's. There's Curesearch.org, there's the leukemia/lymphoma society. If you want to help with Childhood Cancer DO NOT give your money to American Cancer Society...they give 1% of ALL their funding towards Childhood Cancer (I dislike them greatly and think for adults they're fine, but for children they're disgraceful).

I'm emotional today without a doubt. I miss my daughter. I miss her so much it hurts. My heart hurts, my head hurts, I want her HERE. I wish I could have woken her up this morning singing "Happy Birthday" to her, having her room decorated with balloons. I wish so many things, but they will NEVER be. I could have 100 children but I'll NEVER have Jordyn back. I love my kids and I'm thrilled about this baby that's growing in me, but it doesn't take away the pain that's in my heart for Jordyn. I know she's safe, she's with JESUS! I wish she'd never HAD cancer, but that's not our lives. This is. She DID have cancer. She did have a bone marrow transplant, and she did die. We don't get to give her hugs and kisses anymore. I don't get to sneak into her room and watch her sleep. I don't get to feel her soft hair next to my face.
I get so disgusted when I hear people talk so negatively about girls. "Boys are easier, girls are horrible when they're preteen and teenagers", this is normally mothers and I can imagine THEY were a joy at that age. Instead of focusing on the bad they need to focus on the blessing that GOD has given them. Girls or boys they're a blessing. Every single CHILD is a blessing.
You want to do something in memory for Jordyn? I challenge each of you parents out there today no matter how ugly your child was today, how sassy they were, how dirty they got, how anything that you would view as negative...to let it go for a moment and just HUG them. Just kiss them and just DROP TO YOU KNEES and THANK GOD he gave you that child in front of you. THANK HIM, because let me tell you...you DON'T deserve them. NONE of us deserve our children...but GOD gave them to us anyways! He gave us the honor and PRIVELEGE of them. I KNOW there are days where I am at my wits end with my kids, but we all need a reminder that it doesn't matter. Take them out for ice cream, take them to the park, let them pick what you're having for dinner or doing for the weekend. Why do you need to wait for their birthday to make the day special for them? Plant purple petunia's and tell them about my little girl and how much she LOVED purple petunia's and that she'd pick them and rub them on her face because they were so soft! Tell them how she'd stand and just touch the softness of them.
Let me tell you one big fact....Tomorrow is NOT promised for any of us, including our children.
Don't go to bed tonight without your child(ren) knowing how much they're loved and cherished. Pray with your children. Make sure you're teaching them about Jesus. (There is NO better gift than telling them about Jesus and how he died for THEM and that he LOVES them and that the ONLY WAY TO HEAVEN is through HIM).
I would LOVE to be able to do all these things with Jordyn today...but I can't. So I'll be doing them with my little boys while we remember Jordyn.

My Heart Is Breaking...Please Pray

This is from a dear friend of mine, Jessica. We met when our daughter Jordyn was alive fighting cancer. Jessica's twin girls both had AML leukemia, like Jordyn. Jillians went into remission quickly. Jade on the other hand did not go into remission and the day after Jordyn's bone marrow transplant (Jordyn's was Nov 19) Jade had her BMT. Jade relapsed in Jan. and died Feb 4, 2000, exactly 4 weeks from the day they found out she'd relapsed. I called Jessica on Feb 5 to tell her about Jordyn's relapse (not knowing Jade had died) and she broke the news to me, and THEN comforted ME! To say that Jessica is a blessing is putting it mildly.
Aprox one year after Jade died, Jillian relapsed. She had an unrelated bmt. Remained in remission until her 1 yr and relapsed once again...again she had a BMT. She then had a partial relapse and she had a stem cell transfusion from her donor. She's been cancer free for the last 2 yrs plus. She started complaining not long ago that her knee has been hurting her so they took her into the dr. They did an XRay which led to an MRI, and said the only way to know for sure was a bone biopsy which they did on Monday. They said it was either scarred cartlidge or osteosarcoma (cancer).
Please read on in Jessica's own words.......


So it’s confirmed – it’s osteosarcoma.

We have three options –
Surgery alone with an 80 percent chance of return in same place or somewhere else…
Chemo – surgery – chemo – best odds with most side effects and risks – she will be out of school now until next year –
Do nothing and keep her comfortable


I don’t know what to do.
There are only four cases of this ever and its in some german journal. These cases were single transplants only.
Jillian is one of few cases internationally to have back to back unrelated transplants. She is, to our doctor’s knowledge, the only case of her kind to develop this form of cancer post two transplants. The underlying or obvious is that no one has survived or did not develop this form of cancer.

She is again in unchartered territory.

When do you know when to lay down the sword?
When do you say keep the fight?
How do we maintain her quality of life? That is what is most important.
Doctor said if we have enjoyed her, despite the treatments she has undergone in past 8 years, then prob worth going forward.


PLEASE, PLEASE PRAY FOR US TO HAVE CLARITY IN OUR DECISION. PLEASE ASK GOD TO GRANT HER AND US MERCY.

Dr. Frangoul can not make this decision for us – he supports whatever we decide.

I will ask, and PLEASE UNDERSTAND, that you don’t try to call or email. I can not handle the task of repeating myself or even going through the mail. I know that it would only be supportive and wishing us well – but right now I can barely walk.

I think I will send out another email in days with a caring bridge site for people to check. I am sure I will have daily postings.

Although I should not be concerned about anything but my family – again I am grappling with how to deal with working, supporting myles and caring for my child. It’s always the same obstacles. Vanderbilt is the very best place I have ever worked and has been so gracious with me and our situation. I am very much a control freak and am sure this is part of why I have trouble turning over some of my workload to others. But I do feel very compelled to do my job because of the flexibility and understanding they have granted me over the past 8 years. I am very unsure if I will be able to do that – this will be our FOURTH battle and I am worn out. I hate saying that considering Jillian is the one whose body is battered.
I will stay strong. I will remain faithful. I will get through today.
But I can not say for sure what state I will be in to deal with other matters – which concerns me.

I am crying out for help and so desperate for a miracle. I am not ready to let her go. I am not ready for any of this.

Pray for us please and I am so sorry.
Love,
Jessica

Our 10 Year Wedding Anniversary

Today Chad and I celebrate our 10th wedding anniversary. We met 11 years ago this coming summer and became friends. Soon before I knew it he was one of my best friends, and then I got smart and decided I wanted the nice guy. I'd been with the bad boys, the jerks, etc...it was time to try out the nice guy and I couldn't have made a better decision!

We dated for 4 short months and then got married. After just a month he asked me to marry him and I said yes! 4 months after we said I do we found out we were pregnant. We welcomed our daughter just 4 days after our 1st anniversary. A year after that our daughter was dx with leukemia and 14 months after that we were burying our precious little girl. Then we found out we were expecting our 1st son, who came right before our 4th anniversary. Chad went through his 2nd deployment of our marriage when Jacob was 6 months old (his 1st was when Jordyn was a baby). Two years and 9 months after Jacob was born, Jackson joined our family and 5 months later Chad was off to Iraq for the 1st time. We moved to Germany and off he was to Iraq again. Here we are 10 yrs later....expecting our 4th child and celebrating 10 yrs.

Our life has been one of ups and downs, but I can tell you there is no one else in this world that I'd ever want to spend those ups and downs with. He's everything to me. I've had to do a lot of giving as has Chad. I've had to do a lot of changing, as has Chad. I've watched our relationship grow from something that was primarily very immature to something that I'm so proud of. I've grown in my relationship with Christ and it's been a joy to see Chad's relationship grow as well with Christ. We went from putting ourselves first to putting GOD first.

I look forward to spending the next 50 years with Chad. I look forward to growing old with him. I am so blessed to have Chad as my husband and so blessed that he wants me to be his wife.

8 Years Ago Today

March 24,1998 was my due date for Jordyn. From the first moment I found out I was pg with her they gave me a March 24 due date. I had ultrasounds and it always gave the same date...March 24. March 24 came and went and Jordyn wasn't born until for 6 more days. Fastforward a year. Jordyn and I join Chad in Germany. He'd been to Bosnia and was finally back, got us housing and we landed in Germany on Jordyn's 7 month birthday. We hadn't seen Chad since Jordyn was 7 weeks old. We'd definately missed him. Life was good, our family was once again together just as it should be. I took Jordyn in for her 12 month check up 7 days before her birthday and the dr told me that it sounded like Jordyn was developing croup and said "Don't worry, she can't die from it". I was a naive 22 yr old mother who hadn't ever heard of croup. Jordyn's breathing wasn't too bad that day, but the next day March 24 her breathing kept getting worse, but about 7 pm her breathing was getting bad and I was getting worried so we drove her to Landstuhl. Chad was parking the car and I ran her into the standing room only ER and the nurse listened to her for just a second and rushed us to a room, while she's yelling at me saying "don't you know your baby could die from this". I was crying and said "but the dr said she couldn't". Everyone stopped and the nurse calmed down and apologized and told me that Jordyn's windpipes were swollen closed 75%, and that if they didn't get them opened she could stop breathing. The gave her a shot of a steriod and the dr ordered for a CBC to be done (which is NOT what they normally do for croup). Before midnight they came in and told us that Jordyn had leukemia. We felt like the world was crashing down upon us. How could our little girl who was seemingly perfectly healthy except for a case of croup have cancer? The dr told us that there were 2 types she could have ALL leukemia (which is the most common form in children) or AML (most common in adults over the age of 60). He told us to PRAY for ALL. He told us we'd be flying to Walter Reed the next morning so we needed to try and get as many loose ends tied up as quickly as possible. We called a friend of ours to take care of our dogs and cat and check on our housing until we could get everything figured out. Chad called his company and told them what was going on and they were working on a couple different Special power of attorney's so our friend could ship our animals and get all our household goods and car packed up and shipped. We called our family in the states and told them the news. The night feels almost like a blur in ways, yet I feel like I can still remember every detail. It was all in slow motion yet speeding by so quickly at the same time. Jordyn was getting breathing treatments all night long. They wanted her to stay in a tent covering the bed and she was so scared and was having none of it, so her peditrician let us hold her and just hold the breathing treatment up to her face. While one of us held her and slept the other held the mask, then after a while we'd switch. At some point her ped came in and said we weren't going to fly to Walter Reed immediately, but instead would be going to a German hospital in Homburg (not Hamburg), which is about 20-30 minutes from Landstuhl. We called our families again and told them the change of plans, then before we knew it Jordyn and I were loaded into the ambulance with me holding her and both of us strapped down. Chad followed in our car. That day her new ped. Oncologist came in and told us that Jordyn unfortunately had AML leukemia and would definately need a bone marrow transplant down the road. I don't remember a lot of those first few days in Homburg University Hospital. Jordyn had developed pneumonia, she was literally fighting for her life, she was so sick. A lot of friends were in and out. The ones I clearly remember are Chad's Commander and his wife and baby boy. Their baby obviously couldn't come in, so they each came in seperately. When Matt walked in he just broke down sobbing. Just two nights before this we'd all been at Ramstein (Airforce Base) rollerskating, including Jordyn, and now here she was with all kinds of wires stuck to her, in her,and at the time he came in she was getting a breathing treatment, and she was so weak and pale. He just kept crying and saying how horrible he felt. His wife, Audrey came in and I know she cried, but not like Matt. Matt told me that what ever we needed from the company just to let him know and he'd make it happen. He told me one of the best lessons I've ever learned in the Army. If we needed something for me to call and request it, because I didn't have to go through the chain of command and keep my military barings, like Chad would have to...that if there was any issue just to call and there's nothing they can do to Chad! (I've used that knowledge a few times, most the times keeping my own barings, but there's been a few times where I've lost it..rightly so though!) We really didn't have any issue's though, the whole battalion was great and the community in general was wonderful, very supportive and caring.
It was the beginning of the last 14 months we'd have with Jordyn. Although I'm sure many think it wasn't actually all horrible. We had great Faith in God and today I have no doubts where Jordyn is. She's in Heaven with our Savior, Jesus Christ. I know she's no longer in pain, no longer having to fight to live. She's free to be healthy and happy.
I wouldn't trade those 14 months. They were some of the hardest, but some of the best months of my life. I got to see how much strength and determination my daughter had. She showed me that kids are far stronger than adults. If you visit a children's oncology unit and visit an adult one, you'd see a vast difference. We would have to sometimes go up to the 7th floor oncology unit (adults) and it was such a different atmosphere. 5th floor the kids are smiling, laughing, LIVING. Upstairs they're complaining, moaning and groaning and it feels like more are dying than trying to live.
One thing Jordyn's German oncologist told us when she first started chemo and she didn't immediately get sick was that a big portion of getting physically sick from chemo and radiation is in our minds. We "know" we're supposed to get sick from it, so we do. Kids don't know they're supposed to get sick so quite often it takes them longer. The younger they are, the longer it takes. As adults we see people in our lives with cancer, hear about the horrors of chemo and radiation side effects, we see it on tv and movies, etc. With kids they don't know that or see it. So although they don't feel good, they're more likely to just play and do kid things.
Anyways...so today we mark 8 yrs since our world changed. We learned that day that tomorrow is not promised for any of us. That even our children are not guarenteed to live. Without Jesus our family would have no hope. Because of Jesus though, I know that one day I'll see my little girl again. I know that she's healthy in Heaven. That she's happy. Her work is done. I don't believe she's an actual Angel. Angels have jobs to do, her job was done May 8, 2000. I don't believe she "watches over us", she's done her job. I miss her more than any of you could ever imagine. Our family will never been fully complete because she is gone, but I have peace in my heart and mind.
If you want to do something to save another family from going through the heartache we have support childhood cancer organizations (NOT The American Cancer Society..they DO not support Childhood Cancer..they only give 1% of their profits to CC, but they have NO problems USING the children for their propaganda). There's Curesearch (http://www.curesearch.org/), there's St.Baldrick's (http://www.stbaldricks.org/) they have annual head shaving fundraising events throughout the world you can shave your head or support someone who is! There's the leukemia-lymphoma society (google them). There are a lot of good organizations that give a great amount of their profits to finding a cure for CC.
God Bless

***All pictures of Jordyn except for the first were after her diagnosis (dx). The first picture was taken the day she came home from the hospital after she was born.

Celebrating with a friend :)

My friend Linda is having a contest that I'll be joining in...so if you're a scrapbooker and interested in getting some free things and celebrating her 200th post...go check her out!!

http://fifenhorn.blogspot.com/2007/03/one-more-for-todaya-contest.html#links

It's Snowing

It's snowing in Germany! Just last week we were enjoying the high 60's and now my van is covered in snow. I tried to take some pictures earlier, but they did n ot turn out well at all. It started to snow again this evening, but it was getting dark at that point. It's supposed to snow all week long. The weather is just simply crazy!

I was very productive today to say the least! I got tons of laundry done. For those who know me really, really well you know that I HATE and I mean HATE doing laundry. I will avoid it at all costs, but the boys were down to sweat pants, Jacob was running low on socks, and I needed some things as well...so off I went down 4 flights of stairs and did laundry. The boys then had to clean their bedroom and Jackson being ever so helpful pulled out all the clothes...I know the majority of them are clean, but he put them in the dirty clothes...so they get to all be rewashed. Yeah. Chad will be going back and forth to Graf all week for a class. The class is only going to last 2 or 3 hrs so he will get up bright and EARLY every morning and should be back by 2 or 3 every afternoon. Tomorrow I'll be helping with childcare for a mom's morning out that PWOC is offering (it's an outreach program). So, I will be gone all morning, so in the afternoon while Jack naps and Jacob works on his school work I'll be busy doing more laundry again. I think I'll probably have to do laundry all week to get caught back up. I need to wash bedding as well and with 3 comforters and 3 sets of sheets, pillows, and mattress covers that's an all day job in itself. Since tomorrow and Wed morning are both gone and Thursday I have to do PEP briefing my time is more limited.
Oh Wed-Friday I'll be watching 3 extra kids. Actually Friday I'll have 4 extra ones. The 3 come from a family who's moving next month. Her youngest has never been away from Momma so who knows how that will go. The 4th on Friday she's been away from Momma, so hopefully she'll do good. Jacob goes to little "E's" house on Wed mornings ("E" is the one who's coming Friday while Momma goes to the dayspa for some well deserved pampering! Linda...she's Vern's little girl! I'll take a picture and email you her, she's so stinking cute!).
It's definately going to be a busy and probably cold week. Something tells me this snow isn't going to do much as far as accumulation goes so it's just going to make mud vs anything good to go and play in, and man I love it when it's either nice enough or cold enough for the boys to go out and play, run, and simply burn energy. They sleep so much better and we all feel better when we can spend hours outside. I don't know how parents do it when they stay inside, let the tv be their babysitter, etc. I need to be outdoors as much as the boys I think. I'm in a much better mood when I've been in the sunshine. We lather on sunblock and out we go.

Oh on baby news, last Monday I had my ob apt. The baby was not giving up what she/he is! Those legs were closed up tightly. Hopefully in April we'll find out at my big u/s!

God Bless

Cell Phones and Bibles

I wonder what would happen if we treated our Bible like we treat our cell phones?
What if we carried it around in our purses or pockets?
What if we turned back to go get it if we forgot it?
What if we flipped through it several times a day?
What if we used it to receive messages from the text?
What if we treated it like we couldn't live without it?
What if we gave it to kids as gifts?
What if we used it as we traveled?
What if we used it in case of an emergency?
This is something to make you go ...hmm...where is my Bible?
Oh, and one more thing. Unlike our cell phone, we don't ever have to worry about our Bible being disconnected because Jesus already paid the bill!
Makes you stop & think "where are my priorities?"