History

Journal History

Saturday, September 26, 2009 6:14 PM CDT

WOW! It has been SEVEN years since your BMT and time has went by so fast. I hope I did not let the stress of worry ever keep us from enjoying every day of your life. You have given me so much and have made me a better person. You are my inspiration, and now our HOPE for your brother. You have been such a determined fighting soul, I LOVE how you never give up-even when it is things you should not argue. It shows me you will go far in life.

You are my precious, our miracle, our sweet Kristan Grace.....

Friday, January 30, 2009 9:27 PM CST

hi it is Kristan. I went sledding in the snow one day. It was fun. i love you............................................................................................................................................................................................................................................................................................................................................

Saturday, June 14, 2008 7:16 PM CDT

Today is a date that is forever etched in in my heart, and weighs heavy on my mind. It is the diagnosis day for Kristan's disease that she HAD - June 14, 2002 - Yes that is 6 years ago! I remember the day very well, even though I spent years trying to forget. Kristan had been having fevers off and on and petichae. Those were really her only symptoms, but when the fever came back blood was drawn and we discovered low counts. She had two different times her counts recovered on their own, not sure how with no drugs to help. The doctor that made her diagnosis was in the process of moving to a different area and it was pure amazement we had him there. (Talk about being at the right place at the right time, you could get no better than that!) You see they originally thought she had a severe case of CMV, in which she tested poss. for. He was the only one who found her disease, with it being so rare. If it were not for him, being guided by God above, she may not be with us today. We are so grateful! I remember the conversation and thinking WHAT IS A BMT? I just stared at her little face and everything that was being told to me sounded like blah blah blah, I literaly could not hear them talk and would not make eye contact with them. I flat out ignored them all like I was in a trance, a frozen shock of a trance. It is such a cold bitter place to be, no one should ever have to go there. I could cry just thinking about that day. The part that is so wonderful now is that we can look back and see this in a different light. We are so thankful they even found her diganosis, that she made it through the most horrible transplant, and that she looks so good today. She is a picture of good health and I love that smiling face that never stops. She made it through Kindergarten this year and did very well. She is such a strong girl in strength and will. She is my precious miracle child that I love with all my heart. We are so blessed to have been able to carry this cross, meet all the people that came along with us through the journey, and to have gotten to strengthen our faith in the Lord. Because of HER, not only would we have possibly missed Ethan's diagnosis, but because of KRISTAN GRACE I am now strong enough to fight this battle with Ethan...

Thursday, February 28, 2008 3:17 PM CST

+ DAY 5 years and 5 months

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It has been a while since I have written. Even though we have been busy keeping updates on her brother's site, we feel the need to still offer hope to those who have been through this. We now have an hlh-fighter and an hlh-survivor. There are so many more hlh families now than 5 years ago. There is also a new protocol and more survivors with the Campath protocol (RIC). Doctors are becoming more aware and diagnosing faster.

Kristan is doing great! Over the last year she has really started to blossom into the smart little girl she is. I was so nervous about sending her off to Kindergarten when I spent the last five years keeping her in my sight and protection. Then to turn her over for someone else to have for so many hours a day was really making me so upset. I know I cried when Morgan and Logan started K, but this was going to be different. Unfortunatley I did not get to experience that torture since Ethan was dx. We decided to homeschool to keep her away from all those germs that she could have brought home to him, it was just not worth it; it is his life. She will understand one day. I am glad we got to share this special year together!

Kristan is such an amazing little soul who still makes me smile each morning. She always has a smile on her face and gives me such hope. Does the worry ever stop? Well, it is not constant as it is in the beginning but when her nose bleeds, she complains of a headache for days, or she has to be told to go to the bathroom (she plays too hard and she seems to have stretched her bladder and we have to tell her to go), then it does trigger a little panic. She is due for her 5 year check up but with what we are going through with Ethan, we will wait a while longer.

We still continue thanking God for giving her a second chance at life and giving her a donor, her special brother and friend! Thank you for folowing Kristan and check out her newest pictures!

Thursday, February 28, 2008 2:23 PM CST

+ DAY 5 years and 5 months

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It has been a while since I have written. Even though we have been busy keeping updates on her brother's site, we feel the need to still offer hope to those who have been through this. We now have an hlh-fighter and an hlh-survivor. There are so many more hlh families now than 5 years ago. There is also a new protocol and more survivors with the Campath protocol (RIC). Doctors are becoming more aware and diagnosing faster.

Kristan is doing great! Over the last year she has really started to blossom into the smart little girl she is. I was so nervous about sending her off to Kindergarten when I spent the last five years keeping her in my sight and protection. Then to turn her over for someone else to have for so many hours a day was really making me so upset. I know I cried when Morgan and Logan started K, but this was going to be different. Unfortunatley I did not get to experience that torture since Ethan was dx. We decided to homeschool to keep her away from all those germs that she could have brought home to him, it was just not worth it; it is his life. She will understand one day. I am glad we got to share this special year together!

Kristan is such an amazing little soul who still makes me smile each morning. She always has a smile on her face and gives me such hope. Does the worry ever stop? Well, it is not constant as it is in the beginning but when her nose bleeds, she complains of a headache or legs hurting for days, or she has to be told to go to the bathroom (she plays too hard and she seems to have stretched her bladder and we have to tell her to go), then it does trigger a little panic. She is due for her 5 year check up but with what we are going through with Ethan, we will wait a while longer.

We still continue thanking God for giving her a second chance at life and giving her a donor, her special brother and friend! Thank you for folowing Kristan and check out her newest pictures!

Tuesday, December 4, 2007 4:57 PM CST

Hi! This is Kristan. I am 6. I am learning to read. I
can wrIte my letters. I am doing good! I
beat HLH!

Friday, October 26, 2007 8:18 PM CDT

HAPPY BIRTHDAY
My sweet little SIX year old. Your first B-day was spent in the bmt unit and we were praying hard we would see this Birthday along with each one that followed the first. EACH one has been very special and we are so blessed to have these precious years. You are such a fun girl, and have a great imagination and a little tough girl too. Nothing has gotten you down with your smiley face, you make all you are around smile. I enjoyed planning this day with you and we did all things on your list. We had baby pig in the blankets with nachos and cheese, you chose a straw. cake and bubble gum icecream. We played games, did face painting,you and your brother and sisters had a treasure hunt, did a craft and you loved all your gifts- your Mawmaw was nice enough to deliver them from the family and Aunt Holly brought hers by personally. Even though we could not have outside people in, you did not care. You had a great time and each of your siblings agreed it was a blast. What a great planner you are! I liked your idea of the sleep over in the living room and I think you liked the hot cocoa with your relaxing bubble bath before the party. Glad you enjoyed the day. I LOVE you SOOOOOOOOOOOoooooooooooooooooooooo MUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wednesday, September 26, 2007 0:00 AM CDT

Happy Re-Birthday!

My sweet Kristan Grace, oh what a blessing you are. You may not know this now, and may never understand it in a life time but you have truly changed my life. You, at age 7 mo. old- a wee baby, got diagnosed with this rare disease. What I thought of at first as being the absolute worse nightmare anyone could bare, watching their child go through this. Well, let’s just say you brought me closer to God than I had ever been in the 32 yr.s prior. Do you realize the impact you have made on not only your parents but so many others? Wait until your brother really understands that he helped save a life at 4 yr.s old. You are a true miracle, even from day one. The doctors gave us less than a 2 percent chance of having any more children. When they were ready to give up they saw your little heartbeat on the ultrasound. I knew then you would be special, that you were meant to be. I started praying night and day, and never gave up on you. I kept faith alive in my heart and pleaded with everything in me. And begged everyone to do the same.

When I spoke of you being a miracle, when you are older and read this journal you will understand it. When you were only 3 mo. old you were hospitalized for rsv, so we thought. Now we know that it was actually hlh showing up for the first time. Normally you survive for two months, normally this disease-especially 5 years ago-is found premortem (70 percent of the time). I know this now because I remember them feeling your enlarged organs, I remember your face covered in petichiae, and your counts were down. That strong spirit and I am sure with the help of the steroid in the breathing treatments gave a temporary remission. Had it not, they would have thought it was only rsv. Then at 6 mo. it comes again, they thought it was cmv-since you tested positive for it-now we know it was this ugly disease again. Again you fought the beast off, never have I heard of someone doing this, usually it is straight downhill from the onset-yet you survive and recover counts. What an amazing girl you are.

It wasn’t until at 7 months it took it’s final blow, you had enough and needed help. You fought your fight and needed your brother’s cell to conquer. You fought, you won, and now you are a survivor. Your bmt was hard but you were strong and made it through. You are giving others hope from all over. One of the bigger things you have done too, is IF you had never came in to our lives, if you would have never been diagnosed(and by the way that is another miracle story since only one dr. found it, while others scratched their heads), then your baby brother would not have had a chance. We would have thought he only had a virus at first and he was deteriorating quickly. I’m not sure if they would have even ever made his diagnosis, since he had nks and was more rare of a case. He now has a chance, and I now have hope. Mommy loves you so much, words could never express. You are truly my Amazing Grace.

Love,

Mom

Saturday, September 22, 2007 8:33 PM CDT

Well, party plans have been made. In a few days Kristan will be 5 years post bmt. We had huge plans prior to her brother's diganosis, but now we can not go anywhere or be around anyone. So we tried to make it as special as we could. We let her plan the day, the meals, and the fun. She is pretty excited right now, because we decided to have her celebration tomorrow instead of on Wed. that way she gets to have the whole day be her's. Not have to wait for daddy to get off work.

Remember she came up with all this herself:
Her plan for breakfast is white choc. chip pancakes, with white syrup, foamy whipped cream with sprinkles and white milk w/friutloop smoothie cereal straws. She then wants to open her presents. She has been wanting a guitar; she loves to sing and dance. We found her a Hannah Montannah guitar that she has never seen one and wil freak out when she sees it. I even got her a Hannah wig-yes they make one. Anyway she planned her lunch with all her fav.s- b-b-q chicken, Velveeta shells and cheese, baked potatoes w/sourcream. She wanted a cake decorated by mommy and her with pink roses we will do that together tomorrow.

I told her she gets to pick everything we do. I imagine most of the day we will bewatching her sing her little heart out with her new guitar. She is such a sweetheart, she never asks for much and appreciates every little thing.

Saturday, August 4, 2007 9:44 PM CDT

Our sweet heart baby Ethan has been diagnosed with hlh, rephrased FHLH. This new diagnosis also changes Kristan's to the same. They have the familial form. Not only is it so rare...1 in 1.2 million, only 20percent is this familial form.

We are completely devastated beyond belief, there is absolutely NO way to express how sad and how scared we are. Just a little over a week ago our lives were normal and I can not imagine how we could ever be that happy again. Never do I take anything for granted, ever! I love my children more than anything! I know each day is a blessing. For the last 5 yr.s since Kristan's bmt I have prayed night and day that none of our children would have hlh and I thanked God for all our blessings.

I feel like this last week has been an emotional rollercoaster. Most of you know the story but alot of you are wondering, this is what happened:

Last Wednesday Ethan was being very fussy, and later after a nap woke up warm with a temp. Instantly I called to see what temp. he would have to be seen since he was 10 weeks old. We ended up taking him to ER the same night because the temp got up to 101.7. The ER dr. was going to draw labs but they couldn't find a vein so I opt to see our peditrition first thing in the morning and they felt he was well enough for this. Thurs. he saw the dr., it looked like a virus and she said if I wanted labs drawn we could but at that point he looked ok.. We decided to wait since I knew if labs were off due to a virus I would freak and head to Children's.

After I went home I felt like he was looking worse and I knew he had it. There is something to be said about Mother's intuition. I called and asked for blood to be drawn, I wasn't going to sit back and watch him get sicker because of my fear so I took him back up and all his counts were low.I completely freaked out! Total panic! I said we are headed to Children's and the nightmare begins!

We go through ER and the tests begin. It took an entire week of running every test because this disease looks like a virus on paper. His ferritin was getting higher and his liver and spleen began to swell until I could take no more. The two tests that were pending were the bone marrow aspirate and the study of the nk cells. I was SO agravated sitting back and watching him deteriorate before my eyes. I knew the bm didn't matter since they may or may not see anything. We all figured the nks would be absent since this is typical in fhl, 90f the time and really puts the final on dx.

Results come in and I thought hlh would be the worse dx, it gets worse. The nks were normal. What did this mean?! It meant we have to treat our child like he has hlh eventhough it was not typical to present this way and the dr. mentions maybe he has an underlying disease we don't know about. Also the only thing getting me through is knowing since both Ethan and Kristan presented at birth that most liely the other kids are ok.. Well, this new scenerio was making me wonder this since if you can have god nks and still have hlh puts a whole new twists on things. Logan had nks, that is how we knew she was cured, she got his nks and they recovered so we were told as long as you have nks you can not have hlh. WHATEVER! See where I am going with this, it makes no since yet we can wait no more he is going down fast, his tummy is huge, he's yellow and ferritin is 5,000.

He received chemo and dex.. The next day his belly was half the size, he looks alot better but the steriod has made him want to constantly nurse. I have typed this entire thing with one hand while nursing.

I want to thank everyone for your prayers and I have had two very special angel friends that have went beyond anything I would have began to imagine. My friend Jacki whom I met when her son was in the bmt unit comes bringing in not only a wagon full of all kinds of goodies including a coffee maker and supplies we were really wanting coffee, but she brought in sunshine. She brought with her hope for us and gave us alot of support, we were so thankful we cried when she left after looking at all the gifts she gave us. Then our dear friend Alison who we also met in the unit came bearing gifts yesterday. Not only were we so emotionaly exhausted and so frightend, she came in and her visit really made us feel better. she brough so many wonderful things and we felt like a kid at Christmas time looking at it all, everything we needed. Both thse women knew what we needed because they had been there. I admired her strength and knew she was a Godsend (they both were) because only God could have gave her the strength to come in to give us support where her daughter spent so many days battling her disease until God gave her an eternal healing and brought her to heaven with Him. I think her Angel Alexandria gives her so much strength to find people who needs her help.

When we thought she had given us way more than we could except she brings in this brand new laptop computer. I was speachless. This I knew as more than I could except or repay and Dennis and I both about cried when she left. This was the nicest thing anyone has ever done. Then when I realized how now I can let you all know the updates sooner this way and see your guestbook entries and prayers, the gift really means ALOT!!!!! It will help us stay in touch without endless phone calls and who did we tell what.

I must go, I am setting up Ethan a web-page soon and I will keep you posted. We are so exhausted! It has taken me 3 hr.s to write this with all the stoping, oh well.

Ethan's web page is www.caringbridge.org/visit/ethanlee

Sunday, July 29, 2007 11:58 AM CDT

My heart hurts, my eyes are so blurred from tears I can hardly type, my strength is demisnishing. We rushed our baby boy Ethan to Children's Wed. only to learn he may have hlh like his sister. I can not give you all details now because I am too upset. It is really leaning toward it since not only are his counts down but his liver and spleen are starting to swell, not looking promising but there is a little hope that it could all be viral(ME not bying it!). They still think it could possibly be a virus and his white count was up today. We may know alittle tomorrow when they check his nk's and his bm aspirate. His anc was noraml, go figure, it isn't hard enought to deal with us please let us know and let him begin his treatment and get better. He is receiving blood today and got platelets last night.

Need to get back to him. PLEASE PRAY for a miracle and his body fights it off or if it has to be this we will know and he will be a survivor like his sister.

Monday, July 16, 2007 2:09 PM CDT

Hello
All is going well in the household and VERY busy. Never a dull moment with five children. And hardly ever does it happen that there is no stresses or concerns arising. More so this week since Ethan is due for his shots. Shots are no fun anyway but add the concern if they could trigger an underlying disease that we do not know if he has "hlh" or not: it brings alot of anxiety and stress to say the least. I tell myslef that even though Kristan had hlh the shots seem to not be in any connection with her diagnosis but I do know some parents who swear it triggered their child's hlh, either way I will be in this little dazed bubble of stress until, I don't know when?...maybe when they are out of college and starting their own family life. Anything that causes an immune response is scarey for us. I am praying that he does good with his shots tomorrow and he stays well and no viruses for a long time so I don't have to freak out with worry with each illness.

I really can not even immagine life if I did not have these worries with my children, I think that would feel like heaven to me to not worry about a genetic disease lurking and not knowing IF or WHEN it could happen to any of my precious children that I love with all my heart and soul. This is the cross God has chosen for us so I have to carry it rather I like it or not, but I do thank Him for all the blessings He has given us! And for our beautiful children.

This aweful 'mood' of mine began last week when I decided to go back and read some of my old journal to see when I had Addison's shots done and how she did with them. Of course I have to read about losing my father, whom was like a best friend that I was so close to and loved so much. Addison was 1 month old when he died. His death Anniversary was July 7th on top of it. I read how I was really worried about Addison having her shots and how my sweet boy Logan was starting Kindergarten and had to get his shots which were a live virus "MMR" plus Kristan was beginning her entire thing of immunizations since her bmt wiped hers out. THAT was very stressful as well yet we made it through, Praise GOD! I wonder can I be this blessed again? Please God help us to be!

I have alot of mixed feelings with our little Kristan Grace starting Kindergarten, our litle one in million, miracle whom I kept in a very protected environment. One that received alittle more attention, more concern and worry, and definately more hand cleaning. Hope I haven't made her such a germ freak she refuses to share in school. How can I let her go, into someone else's care? How could I trust anyone to watch her as closely and carefully as I have? I held the child, who was so weak and sick all her baby days for the first year of her life and nursed her for two, I cried and prayed each day for her, her smile kept me strong and made me know it was okay. She taught me how to be close to God and to experience the first miracle I ever had, along with many others. She introduced me to a new way of life and lots of new friends and families. How I can I let her go and be away from me for hours each day? She is such a part of me. It was kind of like her infancy lasted twice as long since she had her bmt at 11 months so when she left the hospital her system was like a newborn and everything was delayed even walking so it felt like I had a baby for two years then BAM now she is going to start school so I feel like I missed a whole year of her life. I sorta feel like her siblings did too because they couldn't get as close to her as they would have liked at first to avoid germs, or booboos with low counts when she got out the hospital then when they finally could here came a new baby, Addison so she got their attention more and sometimes I think Kristan got a little less attention from them, maybe not. I am sure she got enough just me feeling bad for her. The other day she heard a song on the radio and started crying saying it made her think of her transplant. She was So pitiful. Then I overheard her and Addison talking about her bmt and Addison said somthing like, "you were going to die.." and Kristan said "NO I was NOT going to die, I was going to get killed." I was like WHERE did that come from? I have never said those words to her or in front of her.

I think God knew I would have a hard time when she started school so He gave us Ethan and I have Addison too to keep me busy. Don't think I won't miss her or cry each day but for HER I have to do it. I have to act so excited because she is. She can not wait. She is going to a very small school which really helps, her teacher is great and is a cancer survivor herself so I trust her to put my daughter in her care. I am sure SHE will be fine, just not sure about ME!!!!!

Sorry can't see the keys. On a happy note we are going on vacation in a couple weeks so the kids are so excited and I am too. I love to see them so happy and haivng so much fun. I just have to get these shots behind us so I can move on and enjoy the vacation. This web-page is like a therapy session and once I write about my stress it seems to lift somewhat.

I am not sure if I mentioned before that we found out that Kristan is missing 10 permanent teeth. I am very sad for her but I am thankful atleast it is not life threatening so we will deal with it, transplant and now futher implants. Not sure if it is chemo related yet or not. She is due for her yearly tests so I will let you know how they go, another stressor and not wanting to have them done until atleast school has started. I can only handle one at a time in order to keep some insanity.

God bless and please count your blessings and be thankful! Kiss your children everyday.

Friday, May 25, 2007 8:04 AM CDT

Hello
I wanted to announce the birth of Kristan's new baby brother Ethan Lee born May 8th. He was born a little premature since my due date was actually June 14th. He was born at 34 weeks 5 days and weighed 6 pounds and 7 ounces which was unbelievable, he would have been a really big baby had I carried him to term. We stayed in the hospital a little longer than normal and he spent his first couple days in NICU but everything checked out NORMAL. I LOVE normal! No oxygen was needed and he could nurse so those are the two main concerns born that early.

They did have me a little on edge the whole stay talking about cbc's and head scans and checking his eyes, etc.. They were looking for evidence of him having fifth's disease since I had tested possitive and actually had it during my preg. with him. I knew that could have made him anemic, which is what they were looking for but when I hear "anemic" of course my first thought is Kristan and her hlh.I really felt sorry for this nurse that mistakenly told me that he was a little anemic. I realise that she didn't mean to, nor did she know that I had an "online phD' in blood and knew everything she was talking about and then some, but after I had my total freak out and she went to clear it up with someone that knew a little more than she did, well we got along a lot better-put it that way. He was in the normal range for his hemoglobin but on the lower end-still in the normal. Most preemies have a lower hemoglobin so in reality with his in the norm. puts him higher than normal(just MY thoughts). The only reason he was is because he is premature and they start making more red cells as they get closer to birth which makes since, this is how the body is ready for the oxygen they will breathe.I'm not going to sit and worry about that.
The brain ultrasound and all checked out normal and was a big releif.

The children love him and he has been such a good baby. SO precious and looks just like his brother Logan and his dad. It doesn't seem real and I think part of that is shock after going so early. We just had my sister's Wedding the week before and I was not toally prepared, let's just say, especially for my water to break around midnight. But very exciting! Never had that happen so it was very awesome to experience.

I love my children SO much and count each one as a blessing. When Morgan came to us 11 years ago I felt like what a miracle since we tried for 7 years to get her with no luck from fertitily drugs so we stopped using them. It was God's plan that way to show us HE was in charge not us. Then we suffered a sad miscarrige a month befoe Logan was conceived, had I not done that we not only would not have Logan, but would we have had a perfect match donor for our next miracle...God's hand at work again. Then when we were given less than a 2 percent chance to have anymore since I had only one partial tube here comes miracle number 4 and 5, Addison and Ethan...God is with us!

Monday, March 26, 2007 2:18 PM CDT

Hello
I know in my last journal there were alot of uncertain things going on. I am happy to report all of which are turning out good so far. I have another ultrasound in 2 weeks to keep an eye on the baby since I had fifth's disease, but each check-up things seem to look good and he is very active. Kristan cleared her UTI, got over the flu and fifth's but unfortunatley has a double ear infection and maybe some other virus. She is alot better now than she was a few days ago. I was really worried since she was sicker than when she had the flu, she was running temp.s again and just didn't look good in her eyes. I was actually glad to hear she had an ear infection since this could explain the fever, but not glad she was so sick with it. Her sisters now have this new virus. I will be glad to see the sick season end. We have always been very fortunate and my kids hardly ever got sick but I am thinking since we kept them so well and in a 'bubble' trying extra hard to stay away from all the sick germs for the first 2 yr.s post bmt that maybe now they are catching up and getting sick alittle more often. The good part was that they went a whole two years with no sickness or virus which was amazing and that was the time it really mattered. As long as they continue to fight it off I have no problem. It just gets scarey with every fever, I will always worry and there is not much anyone can do about that. There is just no test to know if my other children could get what Kristan had and the disease starts with a fever, ususally, and can be triggered by a virus or infection, lets just say I think any loving or caring parent would share in the concern. And we are just alittle more catious aobut things with them. We still germ-x like crazy and avoid sickness, why chance it if you don't have too?

April is going to be a busy month with Easter, our 18th year Wedding Anniversary, Logan makes his First Communion, and my sister gets married in which I am the matron of honor and making her wedding cake. Lots goin on just hope the energy picks up, this has been a very tiring pregnancy; not sure if it is because I have 4 other children and prego, if I am just getting old too, or what but boy is it taking it out of me-could have nothing to do with the stress/fifth's disease/flu I am recovering from plus a 'bigger'baby so they think. I am thinking 37 weeks would be a great time to have him!

Please keep this family in your prayers, a little girl named Taylor that was dx with lymphoma. They need your prayers. I am always so upset anytime I hear of a new dignosis and there seems to be so many, and when you know the people personaly it really hits home. I pray that she remains strong and gets into remission soon and for her parents to feel God's love getting them through this.

Thank you and God bless!

Tuesday, March 13, 2007 3:56 PM CDT

Hello
You know that saying "When It Rains, It Pours" ? I'm starting to feel like I am drowning over here! So many things have happened and most of which is at one time, since I last wrote. Hope you have time and the nerves for this one. LOL!

First I will start with Logan, he came home from school a few weeks ago covered in a rash. Trying not to panic I take him in and one of my fears he had Fifth Disease. This is usually a minor illness that alot of children get and are only dangerous for prego women, like myslef, and children with blood disorders, that have had a bmt, like Kristan, or anyone with a low immune system. The disease makes the person or child anemic then in healthy people they recover, in a pregnant women if she gets it and IF the baby gets it, well it is just NOT good. There is a chance of severe anemia, heart failure, miscarriage and stillbirth. One fear was the baby getting fifths the next is if he could fight it off if he has(we don't know if he does) the genetic defect like Kristan could it trigger hlh. Two seperate worries along with can Logan's immune system clear it and will Kristan or myself get it along with the other children. A week later I get really sick after my sugar test, I get fever and severe chills. A week later not only does Kristan break out in the rash but I do as well. The rash covers my stomache, bottom of my arms and thighs for two days. After a long waiting period I find out I indeed had fifhts, not good. But so far the ulratrasound I had showed everything was o.k. and we will repeat it in 4 weeks. Just a waiting game now.

Kristan did well with fifths and had no problems, I was very relieved unitl problem number 'whatever we are on' pops up. She had an UTI and was unable to clear it for some reason. We started a second round of antibiotics and lots of prayers. When the nurse called me about it, she apparently did not know me or our circumstances, you don't tell me if this doesn't work we will see 'what is wrong' and do an ultrasound. I immediatley told her to let ME talk to the DR. usually the message is relayed, not this time. This is the same day I broke out in the rash and our dear neighbor we had for 20 years died. His name was 'Sonny' Day and that is what he was, a sweet man. The dr. assured me and answered my questions but still I was very worried and upset.

Next, Logan starts running a temp. and having chills. Knowing this fifths he had can trigger hlh, since it hits the bone marrow, lets just say I was alittle nervous. Especially when he starts complaining that he hurts up under both ribs-I'm thinking surely nothing is swollen. Nothing was but he tested possitive for the flu. This is the first time our children have gotten the actual flu. He had temp. for 5 days, Then Addison starts running one. I was assuming at this point she had the flu since she had his other syptoms like coughing, etc.. Logan wakes up Thursday and can not walk. He was in really bad pain in his legs and was crawling. I thought then I may just need to check into the mental ward, but I take him and Addison in to have them swabbed for strep since their cousin had it, they were not even around eachother but I was grasping here.

Logan and Addison both test possitive for strep. O.k. recap; Logan had Fifths, that lowers your immune system then he is fighting off the flu and gets strep. Addison, you couldn't slow her down and she is fully recovered and so is Logan now, bless his heart!

Sorry I know this is getting long! Now Morgan and Kristan have the flu and were swabbed Sunday. So far Morgan is doing horrible with it and Kristan seems to be o.k. and will not stop playing long enought to rest. My dr. appointment went ok. but it did come back possitive that I indeed had fifths. Now the waiting game begins-which really is the story of our lives.

Oh, by the way Dennis and I both have the flu also, lovely!
We continue to pray and ask you to do the same. We will keep you posted as things seem to happen around here! I know that was alot of info to digest and it has upset my stomache just writing about it, but it will be fine. On a VERY possitive note, I feel if we can get through this then God may have a plan to show us that my children's immune sytems are good including the babies and I will be SO happy when that day comes! That is my prayer! I am really starting to become attached and inlove with the little guy and he isn't even here yet.

Thursday, February 8, 2007 2:14 PM CST

Hello
I know it has been a while since I have really written anything so I thought I would give you an update. Sometimes I wonder if I should keep this journal going since Kristan is so far out. Then I read my guestbook or receive e-mails from families saying they love to hear this success story and of course it makes me want to continue. I had read some of my past journal the other day and I could not believe how simular our life of evenets are now; as they were two years ago. First of all I know I was due with this child the same time as I was with Addison, in June. But as I read I had wrote that my son starts Kindergarten in Aug., well Kristan DUE to start K, I also wrote that Morgan had made her First Communion, well Logan makes his is April. It felt like flash back city, VERY strange, NEAT- but strange.

Well I wrote Kristan is DUE to start because we haven't made up our minds to send her or wait another year. I know I'M not ready or never will be but I really feel at this point she isn't either. I know we still have 6 mo. and she can grow alot and mature alot in that time span but I'm just NOT ready. I feel like I missed a whole year of her life with the bmt and she was delayed a year on things like walking and even if she is developementaly ready for K she may not be for first grade. So we will see.

It is such a big decision. I love our days together, Addison loves their days together. They are best buddies and get along so good. Their days are spent in constant play, paintings and playdough, Barbies and Bratz, dress up and tea parties, toe nail painting and afternoon bubble baths, snuggling with Mom for an afternnon nap and movie but mostly baby dolls. Sometimes it breaks my heart when Kristan is so motherly and how she talks about having a baby, I hope she someday can and who really knows if the chemo will affect that. The girl constanly amazes me so it would not surprise me if she has many babies.

The pregnancy is going good. The ultrasound said a bigger baby but I haven't been to see the dr. yet about it. I freaked out because when the lady kept asking were your others big I said not really why is this one? She tells me well the abdomin is. Does the women EVEN have a clue to how much panic that can cause when you don't want to here anything is larger than normal ESPECIALLY the belly when you know about hlh. She assured me it meant a bigger child and the date was only a 4 day diff. not sure if the belly was that many days off or the average was and I don't think I want to know to avoid unnecessary worry. If that makes since. When I called the office the dr. notes read a bigger baby than the gestatioanl age. So I'm just going to try not to worry. I am sure it is fine and I did read that I put down that they thought Addison was going to be bigger.

One other ironic note is we are palnning a trip back to Disney in which we took one when Addison was the age this one will be and all my other children were the ages of their older sibling with the exception of Morgan of course since she is the oldest. I want to take Kristan bak at this age when everythign is so magical and this was her wish with Make A Wish but she was so young she doesn't remember a lto so we are hoping to visit Give Kids the World for a day and her star they put on the ceiling. I did enjoy reading some of my past journal and laugh and cried, but the thing that sticks out was that Logan had told me when I was prego with Addison that he wish I could eat him so he could see the baby. He was only 5 but very imaginative or silly! Crack me up!

I am so beyond thankful everyday for each child God has given us they are all such gifts. I thank Him for their health and I get so overwhelemed at this plan He has for us. You know we tried 7 yr.s to conceive with fertility treatment then once we stopped it all here came Morgan, then after Logan we were given LESS than a 2 percent chance of haivng another one we get Kristan, then trying not to conceive and only one tube which had surgery on it later and the same whopping 2 percent or less chance Addison and now the one. Tell me GOD doesn't have a plan?!

Wednesday, December 27, 2006 2:42 PM CST

MERRY CHRISTMAS!

We are all enjoying the holidays and remembering Jesus is the REASON FOR THE SEASON.

From our family to yours; May God continue to bless you this New Year!

Wednesday, November 22, 2006 3:52 PM CST

Happy Thanksgiving!

I hope all of you have a wonderful Thanksgiving spent with family and friends and of course lots of turkey. Our family has SO much to be thankful for that I would not know where to begin.

I thank God each and everyday for my sweet children that He has blessed us with. We are now expecting number 5. Yes we were a little surprised too! We feel like God has given us so much how can we possibly ask for more. But we do, we ask that this child is healthy and remains that way with no hlh or other life threatening diseases. I know God probably gets tired of hearing my constant prayer:

Thank you God for our children. Please help Kristan to remain hlh free, no longterm problems or life threatening side effects, and to be a longterm survivor. Please help the other children to not have hlh now or ever in the future. For any future children to be born healthy and free from hlh. Please keep them along with their dad and I healthy and safe. Thank you for blessing me with the best dad ever and for the years you gave us together and for the greatest mom who is always there for us. Please...

O.k. this is only the beginning of my everyday prayer, then I add all those whom have asked me to pray for them.

God bless you
AMEN

Saturday, October 28, 2006 2:24 PM CDT

Hello
It has been a while since I last wrote. We have had some ups and downs but are all holding strong and doing great. This photo above is of Kristan playing with her new things she got for her birthday which was Oct. 26th. She turned a big 5. That means she will start school next year, boohoo for MOM. She'll do great though and her favorite part will be meeting friends, she's a social butterfly. Well, maybe the art stuff she will like but when I tell her all the friends and good times she will have then she'll be fine. She just isn't much into learning letters etc. but is caught up on where she needs to be. I really don't try too hard to push the learning part too much because I prefer her not to be bord once she's there because of already knowing everything ahead of time. We are just enjoying all these days to ourselves, just her, Addison, and myself while the big kids are in school. I am taking each day in because I know soon she will be gone all day to school and I will not have that again. So we really take advantage and I get alot of one on one, that I love!

All the other children are fine. Addison turned 2 in June and is an absolute joy. She makes me laugh EVERYDAY. She is so comical, my Dad would have had a hayday with her. He would love her sense of humor and I can see his in her. I think each of my children show a part of my Dad's personality and it really means alot to me to have that, even though Morgan's is irritating the heck out of you with little things she knows will bother you. She is a big 10 yr. old and is still at the innocent girly stage but her attitude is starting to blossom into a rambuncious teen;ugh!
Logan, he is 8 now and looks just like his father, who he adores. He does excellant at school and is in the top of his class, so proud. Morgan does really good too but she is working on some things, 5th grade is just hard.

Dennis's grandmother passed away a few weeks ago and it was a really hard time. She was an amazing woman that I know is missed so much!

I'll write more later when I have new news. I sorta do now, but we are planning to wait to share it. Just say an extra prayer for this family!

Wednesday, October 25, 2006 9:56 PM CDT

Just checking to see if this helped shrink my page. I will journal as soon as the problem is fixed, sorry!

Thursday, June 15, 2006 2:16 PM CDT

Hello
It has been a while and no news in most cases is good news. Kristan is doing very well and acting like a typical 4 year old that she is,with a very strong will; we loved that back then and I am sure it will help out in life.HAHA! She loves her siblings and plays constantly. You never have to entertain her becasue her imagination is exceptional, never bored. One more year and she will start school, I can not even believe it and it makes me want to cry just thinking about it and the long road we had when she was an infant, I think, made her childhood go really fast. Fast on one hand then again there were very long days, especially the 45 days in one small confined room in bmt, no, we would not had thought time was flying then. We were too scared to think of the next day much less her first day of kindergarten.

It was 4 years ago yesterday that she was diagnosed and I had thought about it all week and I think this is the first year post bmt that I didn't have as much of that aweful lump in my throat thinking of it as I have. It's probably due to the fact that we hadn't been to Children's in a while, but I do need to schedule some routine tests soon. We have been busy busy planning fun summer things and just trying to enjoy and make more happy memories with our children. Life is too short and when time passes so fast they are grown in no time.

Logan, her brother and donor turned 8 a few days ago and he was only 4 when he gave his life saving marrow, the age Kristan is now. Addison, baby sis, just turned two; which makes us feel a little better because of the hlh thing being genetic and USUALLY under two. I really felt like she was such a gift from God from the start and she makes me laugh every single morning before she has even been up 15 min.; very comical. Big sister Morgan is turning into a little lady before our eyes, now 10 and getting so big. To look back 4 yr.s ago they were so small.

Father's Day is coming up and I want to wish all you fathers out there a good day. As most of you know we lost my dad, one my best friends and favorite person in the whole world, and this is the second one without him. Never take your parents for granted and spend extra time with your dear old dad, they are very special to us all. I usually have wrote in the past on my Father's Day entry how proud and how much I love my dad. The last entry I wrote was in '02 the year he died and I don't really think he ever read it. Fortunately I had written mostly the same things in a card he did read and I am so glad I wrote how I felt , even though he knew and I know he knew to just know he read them made me feel really good.
Just make sure you tell him you love him is what I am trying to say. Kristan gets sad alot and cries about missing her Grandad; even though it breaks my heart I am so glad she is able to remeber him because he was very close to her and helped so much through the whole ordeal through bmt, etc. causing her to really get attached to him.

Sorry for that sad note and as soon as I learn to redo these pics I will update them. I have some awesome ones from the beach.

Thank you for all who still listens and thanks to my buddy Chryss that reminded me I still have a site.

Thursday, January 26, 2006 2:09 PM CST

Hello
I just wrote an entire entry and I'm not sure what happened to it, but "URGH!"

I wasn't sure rather to keep this web-page going but due to the fact that there are more and more cases of this horrid disease I feel I should. If I can give one person hope, or someone to ask questions to, that if I don't have the answer I know enough families now that I could find out. There is just not enough info. out there on this disease, unfortunatly.

Kristan is doing great other than being sick alot. She was a very sick little girl around Christmas and almost ended up in the hospital for dehydration. The amoxicilan made her deathly ill. She vomitted, diarreaha, stomache hurting, not eating nor drinking anything, really sick and really weak. I hated it so bad. It acted like she was being poisoned each time I gave her the med.. I caught on fast and it was stopped and so was the symptoms. It used to give her blood in the stool after bmt. Again we were unsure for a fact that it was that but since when we ended the drug 6 mo. post bmt she stopped bleeding and started doing dairy for the first time this is MY big assumption.

Kristan was evaluated on her developement aspect and did pretty well. There are things that she is having trouble with and repetition is the key. This may be her age or it could be from the bmt. Some things the dr. found was unusaly rare(go figure) on how she perceives things. She is not learning her letters, etc. as fast as I would like. But atleast I am aware of this and we will just try harder. Now, her not picking up her toys, another issue;HAHA!

I have to make this short but will update sooner, I have to pick up the two big kids from school and wake the two little sweeties from their nap. Awe, one last minute of quiet.

Tuesday, October 18, 2005 9:40 PM CDT

Hello
Great news! Kristan went for her 3 year post BMT follow up/late effects appointment and everything looked normal. I LOVE NORMAL! All her labs looked great, audio was good, echo is not in yet, pft-well, I think it was just practice because she is so young. Actually she will be a big FOUR years old the 26th of this month. These years have went by so fast, some of which were in a fog covered by stress.

Well, it starts off that we are stressed for atleast a month or so when we knew this appointment is coming up then the actual day is horrible. All the emotions, the rememberence, the smells of the hospital(especially the hand soap could send someone into memory lane that one would like to forget), then the fact that my dad(my awesome, wonderful, loving father is no longer with us); he would make many trips with us when Dennis worked) He would see me cry in the rear veiw mirror and he would tell me to stop that she would be fine, as if God Himself told him this. He was very certain. It just hurt so much to see the windows that we usually gave him thumbs up from as he lay in a chair in the garden that the clinic overlooks. I can hear his big deep voice saying "ALRIGHT" and grabbing her out of my arms as he would meet me right outside the clinic. He would always guess her counts the closest since that would give us something to do on our two hour trip, that and pray and just spend time talking to my dad. O.k. I can not see the keys to type, nor the screen. I love you Dad! I know you still pray for us.

One of the meetings which was with the social worker, who is part of the bmt team you see; went fine, even though it felt kinda like a therapy session on our part. Things were brought up like has anything major happened since her Bmt. Well, I had a new baby and my dad died was the beginning of the topic which led to Dennis having to find a new job because of his company not being understanding, to the hell we have had in the last 5 years. I'm sure she was sorry she asked. Not really, she was very nice I just couldn't hold the tears back.

Our favorite part besides hearing good results was seeing a nurse, Amy who took great care of Kristan. She is now 4 years cancer free and looks SO good, the best ever I had seen her. She is an amazing person! She says she still tells patients they have never seen mouth sores as bad as Kristan had. She made Kristan's B-day special 3 years ago along with others in the unit.
Kristan, herself, was amazing. She answered all the questions, she cooperated with everything involved. So cute, so bubbly, bouncing around loving the attention. She even sat up right after the echo with goo still all over her chest and said, "That was fun." I was thinking I better get her out more often;haha!

Boy, we missed our Dr. Grossman more than ever! Yvonne was great, very informative. Sometimes too much info is not good for me, but I know it is issues we have to know, I would just rather not some of it. I stop and think of people who have lost children who did not even worry about things that we do, yet it happens still. A couple from our church just lost their 3 month old to SIDS, so very sad. It just makes us aware that just because Kristan is at greater riskes for somethings do not mean it will happen; nor if they were not at risk no one could guarantee anyone healthy or not. Am I even making since? I'm exhauasted but felt the need to write.

A very happy and sad day. As we were waiting we hear a lady ask to be explained to about the percentage of blasts in her daughter's marrow. We were checking out and two parents and their 15 year old daughter walk out with this horrible sad look and crying. Dennis and I just wanted to cry with them and hug them, I felt so so bad. You know she had to have relapsed. Then another lady who was doing one of the tests tells us her 16 year old has been waiting 2 years for a donor for her bmt. So much saddness. I just wanted to express sympathy towards them, but yet I froze in numbness feeling so very bad for them and not knowing what to say. It shows you how to appreciate everything you have, to pray for people you don't know, and just give praise for all the gifts you have. It's easier to pray when you need something; lets see you pray in THANKSGIVING!

{I am trying to update pics, you would not believe how big she is; 42 pounds and 39 and 1/2 inches she was measured about 3 times today or more today.}

Tuesday, October 18, 2005 9:40 PM CDT

Monday, August 29, 2005 3:00 PM CDT

Hello

It has been so long since I have written and I was not sure if anyone ever reads this journal anymore. I wasn't sure, that is until I had seen some posts and talked to some hlh families that tell me how Kristan has helped in giving them hope and how it is good to see good news. I love hearing survivor stories as well!

HLH is so rare and so misunderstood that any bit of information is a big help to families beginning treatment or who have been affected. I was completely devastated after reading a story where the dr. informed the parents that no child lives after a bmt if they had the genetic form of hlh. Where do they get their information?! That totaly sickens me!
I am happy to say I know someone who had a 3 month old have a bmt and is now a 14year old healthy child. That is SO awesome.

We go next month for all the follow ups, pft, echo, hearing, etc., etc.. This time we have a late effects team speaking to us. It makes me quite nervous to think about. It is one of those things you have to do and we are thankful she is here to go to this class even if they will probably tell me things I won't want ot hear.

Kristan attended Vacation Bible school this summer and I was able to leave her.., there.., alone.., without me; no I didn't stand in the hall keeping guard(o.k., maybe the first day;haha) even though I wanted to. She loved it and it was priceless to watch her. I'm not sure if I can handle kindergarten but that is two years away.

Addison is great and no signs of hlh. Thank you GOD! We celebrated her first Birthday a couple months ago. Logan began first grade and Morgan fourth and both are doing great too! Kristan is already coming up with ideas about her birthday, one being Disney World. Last year was her Make a Wish to go there for her Birthday so she relates the two, so we try to explain. It will be a hard act to follow from last year's party;haha!

I will keep you posted on the results of the tests.

Wednesday, May 18, 2005 1:38 PM CDT

Hello
I know it has been a while since I updated, three months actually. Four children can keep you hopping!

Kristan is doing good and this past virus she had she got over without any help from an antibiotic. Usually they would turn into a sinus infection, which I learned is a common thing post bmt for some reason. Kristan's last counts all came back great; totally normal!!!!! She is due in the next few months to have alot of follow ups on things like heart, lungs, hearing, vision, developemental, etc.. I will keep you posted on results. She is coming up on three years out! UNBELIEVABLE!!!!!!!
Addison will be one year old next month! She has been such a good baby and a pure joy! She has these big blue eyes, soft sweet skin(with great color), and 'chicken feather' blonde hair. Her sweetness melts my heart. She has had several sicknesses of all she recovered from including a three week ear infection. That one made us nervous, but overall I think she is very healthy; Kristan never was. I know most hlh children WERE healthy until one day, but with Kristan not being and Addison looking so good it gives me some relief.

Our days are spent being busy with the norm; children going to school and the little girls and I grabbing every moment we have for play and I love all the make believe Kristan comes up with. She is usually a doctor and my baby is sick. (wonder where this comes from?)

We went to St. Louis for a daily trip of zoo and fun and just to drive by the hosptial and the place we stay really is so bitter sweet. I think everyone in the car had a tear or two, except Kristan. Logan explained to her and said she had a chemo disease and her hair fell out, then Morgan corrects him that it was not called a chemo disease, etc.. They remember, but then again they don't. Logan was only 4 and Morgan 6.

Better go for now, I hope all is well with you and your family and you are enjoying all the time you have with them! I can never stop thanking God for our blessings!

Thursday, February 17, 2005 9:16 PM CST

I know it has been a while since I updated when I just went to sign in and forgot my password; maybe it is exhaustion.

We are on cloud 9 and do not want to come back down. We went to Children's today for blood counts and a follow up; after not going for 8 mo.. It was very scarey because Kristan had been complaining of leg pain for one, plus a few other things like last time her hemoglobin was checked it was 10, she had been getting sinus infection after infection, plus she was on antibiotics that used to always make her red cells screwy, along with some rashes, etc., etc.. Anyway my point is I was nervous like always, not sleeping all week, the whole bit. And... ALL PERFECT COUNTS! I am so pleased, so thankful, so impressed, and so so proud! Oh, and did I mention relieved?!

We now do not go back for 6 mo., and then will do some other follow up tests such as a pft, a heart x-ray, and counts, etc.. It was so nice seeing everyone who had a hand in Kristan's recovery and watch their faces go, now is THAT Kristan and looking at Addison saying how that is how small Kristan was during bmt, etc.. We also met some really nice people who are on the journey we took 2 and 1/2 years ago; so please pray that this baby will have as good of outcome as we did.

The place is so bittersweet, as I mentioned before. You go in the elevators that you remember begging noone to get on with you due to a child with no immune system, you enter a room with other children so sick and fighting for their lives-seeing exhausted parents' concern in their eyes, just wanting to hug them, seeing familiar faces that once held your child down while drawing blood or doing bone marrow aspirate; you remeber the smells, the sick feeling of helplessness in the pit of your stomache, the 'all nighters' turning into 'all weekers', the fear and anxiety over every time counts were done. There is no way to explain the emotions one goes through. Then you hear the good news and you want to shout it from the roof tops and just help every person and give thanks to God! You push all those memories aside and forget the bad times and savor all the ones that came back good, and how fortuntate we are to have what we do. I could never thank God enough!

This is the first time I was unable to share the news with my dad, who was there for all we went through, that kept me possitive. He used to be the one who drove us there while I entertained her in the back seat. I remember him looking in the rear veiw mirror seeing me cry and pray so hard on the way up there. He would always tell me to stop and she would be fine. He was always right! I could not have done it without him. He would wait for us in the garden and we would give him thumbs up through the window. I know he worried but he would never let me see that, he was the strong one. His nickname for Kristan was Grandad's little toughy. I felt him with us there today and I know he looks down from heaven and is giving me thumbs up with a big smile; grandad's little toughy makes me so proud!

Friday, January 21, 2005 8:16 AM CST

Hello
Sorry I have not updated in a while, it has been a little crazy around here sickness after sickness. I am very happy to report that Addison is doing very good. She is still on breathing treatments but we are weaning them off and she does not even act nor look sick at all. When she was first sick it was sooooooo scarey; as I told you before this is the virus that set Kristan's hlh off the first time, dropping her counts and enlarging her liver. I look back now remembering that they had given Kristan steroids to get over her rsv (she was in the hospital on oxygen for a week), it makes me wonder if those steroids put the hlh in remission for the time being until a couple months later when it came back with an avengence. Had Kristan's never went away and if she would have not made it through the rsv I believe that they would have ruled it as rsv, since they knew she tested possitive for that and the fact that many infants die each year from rsv, I'm sure they would have thought it was that and never suspected anything else, much less hlh. How many times does that happen, I wonder? I know many families that this simular thing happened and they did not know about hlh until a second sibling had it; very sad.

On another note, Kristan is doing fairly well with her cold or rsv. She seems good one day, then the next she seems puney. Her hemoglobin was rather low-10.1, when it was checked, but her dr. is going to recheck it after a couple weeks and me giving her a vitamin, along with some better eating habits. (there is not alot of iron in the things SHE likes to eat). I am hoping this is the reason for the drop. Along with the fact she has been sick with a sinus infection that came from a cold she had previous to that then now this virus. She just hasn't eaten very good in a while and I am thinking this is the problem. Of course I freak out, of course I worry nonstop, but that's the momma in me, I suppose. I noticed a few petichae here and there but not enough to rush her in for counts, just enough to make me nauseated. The reason I have not taken her in for counts at Children's is exactly what I have been saying, she has been sick. I do not want her counts done when she is sick(unless of course she ran fever or gave me a reason to) because I have done this before. Once she had a simple cmv(simple to normal people with normal immune systems)virus and it was the first one in her life she did not have to have treatment for but it made all her counts look screwy and had me so upset with worry until they knew for sure it was a virus. It can show up in blood counts simular to hlh, so it is not fun. Needless to say as long as she looks good, and she does, we will wait.

One other worry is she complains about leg pain, another a fear factor. BUT I have asked the dr., I have spoke to a friend who has dealt with leukemia first hand, and there is a difference from crying nonstop/limping/havinghigh unexplained fevers/ etc. to having normal growing pains since these other factors are not going on.

Something I find so odd; Kristan and Logan(her brother and donor) both have been haivng excema in the same locations. We are suspecting strawberry milk or yogurt. Logan always had this problem and now Kristan does. Is it because they share the same immune system or would she have had it anyway? So odd, to me.

I ask for prayers for their daddy. Dennis has been having alot of pain, possibly osteo-artheritis(he's only 35yr.s old), but they are running alot of tests, x-rays, etc. As you see, stress aroung the house as usual. BUT I'm not giving up and I feel pretty optimistic this week.

Sunday, January 9, 2005 3:29 PM CST

PLease everyone pray for Kristan's baby sister. We just found out she has rsv. This is the virus that triggered Kristan's hlh the first time. She is also Kristan's exact age she was at dx, 7 mo. .She also had her shots earlier last week before we knew what she had. Shots are scarey enough since they too can trigger this disease.

So far she is doing o.k., but having to do breathing treatments for a wheeze in her lungs. I am constantly looking for petichae and feeling for fever. Please pray hard she does not have the underlying hlh that Kristan had or any form of it. Morgan is sick too, poor thing. I just read about a family who had a 1 year old with hlh then a year later the 6 year old sister was dx with it. I think I could scream!

I keep telling myself God does not give us more than we can handle, but I think I am right at my limit, God.

Tuesday, December 28, 2004 11:16 AM CST

I am beginning to feel like the 'bearer of bad news bandit'. It is bad when you need the 'prayer line' number on speed dial on the phone. My dear grandmother, whom is my dad's mom, passed away last night. This makes three grandparents my children have lost in 5 months. It makes three of my favorite people in the whole world, whom I was so close with. I know she is better off, I know she now sees God's face, I know she is with her husband she lost 41 years ago, I know she is out of pain, I know my dad met her and escorted her into the light straight into Jesus's arms, I know she is eternaly happy; I also know my heart hurts, that I am numb beyond shock that we have another funeral to attend, and that I will dearly missed her and forever love her. Logan asked me how many people are going to have to die and why do all the peole we know and love die.

I hope you all enjoyed the holidays. We made the most of it and counted the blessings we have.

I love you Grandma, you are the best! I am happy for your reunion in heaven with your husband, your 5 sons who have gone before you and one baby daughter, along with your creator, Jesus Christ.

On another note; Kristan is battling a sinus infection and I hope will soon feel better. Her and Addison both have been sick and are on antibiotics now to help fight whatever is going on. I pray they get past this sickness soon; my nerves are shot!

Thursday, December 9, 2004 10:50 PM CST

I start out my journal tonight trying to not give the impression that I am the least bit ungrateful, nor do I feel like I have not been blessed many times over; I did come to say it has been a bad two years for my family and the last 5 months have been almost unbearable at times. I lost my dad 5 months ago and now I have lost my one and only grandpa whom I have been so close to my entire life. That means my mother, whom I love so much that I could not express in words, has lost a spouse and now her dad only 5 short months apart. This time the news was expected so the shock is not there as much but the hurt still hurts.

Kristan, even though she is only three understands somewhat. She has broke down in tears so many times for my dad and now for her grandpa, too. I got to spend the day before he died with him and I would not trade that day for a million dollars, it is forever in my heart every word he spoke. He lived 91 very full years and he and my granny were married for 54 years where they lived in the house he made with his own two hands, the entire married time. She cared for him day and night, keeping him alive with LOVE and honored his wish not to be in a nursing home. His mind was still sharper than any of ours and he remembered so much; imagine being alive the same time the first car was invented and the internet.I am very proud of him and he will be missed. We are all pulling together as a family. It is hard greiving when you are still greiving. Please pray for our family.

The day I spoke of I spent with him, when we were in his room Addison for the first time, started singing. It was so precious, her voice sounded like an angel, so soft and sweet. My aunt mentioned the next day she must have been singing with the angels that were there. I was not actually with him when he left this earth, but I will tell you that the ones that were felt the energy and when his soul left they all knew it from feeling the tingling, peaceful feel. Most of the time death seems so, I don't know, just so grim and in all the cases of the young, the unexpected and unprepared it is for most, just so overly sad. And believe me, we are sad and are mourning. But with him, the prayers kept coming and we all felt God's grace and to me it was beautiful; like God. My grandpa told me, the day we were to gether that he could hardly look at me and told me I was too wonderful and pretty(maybe he need glasses after 91 years;ha, actually he didn't wear them except to read).He is the wonderful one, the beautiful one and I love him so!

Even though we do not have the shock, it still seems unreal, it still brings reality of why we are here and life is short(in his case his was long, but to him I am sure it felt short), and to really appreciate the things you have.
If you have healthy children, if you have both parents, and if you do not have a sick or recovering or post bmt like Kristan,or any circumstance like so please, PLEASE count your blessings and be thankful and thank God with all your heart and soul. Do not wait until you lose something to realise what you have.

God bless you Grandpa, I know you have seen God and are with my dad!

Wednesday, November 24, 2004 8:17 PM CST

A Thanksgiving Day Prayer

Dear God,

Thank you for my family, and for each and everyday; that you have given me with them;
for the love you have showed our way.
Thank you God, for my precious children and my husband, you chose the perfect ones you see; from what wonderful love they have given me.
Thank you for all that I am able to do and say, thank you, Lord, for this very day.
Thank you, sweet Jesus too for all the special people you sent to me, some have been like Angels on a mission for Thee.
How can I ever thank you, for everything you have given to me from the start,
All I can give you, Lord, is my soul and all of my heart.
Amen.

Tuesday, November 9, 2004 10:12 AM CST

Update written Nov. 14, 2004 2:38p.m.: Precious Zachery has won the battle with his struggle and Jesus has taken his hand, he is healed completely in Heaven now. Please keep his family in your paryers.

On a sad note: I come to you today to ask for prayers of a sweet beautiful baby boy that is fighting for his life post bmt for hlh. His name is Zachery and his big eyes will melt your heart-{see his site below}. There is another family that mt heart goes out to. The mother has triplets. Gianna was diagnosed a couple mo. ago with hlh later to find out her identical twin carries the same destructive gene giving her a 100 percent chance of contracting hlh at some point. The nightmare began all over for this family as they just learned the twin, Olivia, does in fact have hlh now and has began chemo. I am trying to add a link to this site too. I can not imagine how anyone can go through this twice, let alone months apart, AND having a third healthy baby as well to care for. The broviac care, the long list of med.s she has to give and keep straight, the nerve wrecking hours of continual watch and worry, not to mention the horrible toll it plays on you just thinking of what lies ahead.

This has been a really bad week, and I just don't like it! We go from sun and fun to gloom and doom so it seems. Kristan and Addison had shots this week. Kristan received her first live virus, mmr. Of course this causes worry to no end for us not knowing what it could do. Then on top of it Addison is now getting sick; lovely! She only has a runny nose and is handling it well, but...the dreaded BUT, as you are aware it only takes the 'right virus' to set this monster disease off. She can be cooing and gooing one day only to wake with a high fever and then we would be starting our nightmare over only this time I would be more afaid since I know what is in store. I know I sound like I am in a down mood, but it is so hard when you hear new stories of so many more cases and so much not known about this disease. We stop and say we will not let it destroy us or the time we do have. We take each day as a gift with our children. No one knows what tomorrow will bring for them, even people without this nightmare hanging above them. Flu season just scares me and if people get tired of me being so paranoid about my children being around sick children then I ask them to put theirselves in my cituation. I know I can't protect them from everything and I do not plan on living in a bubble for the rest of my life, but at the same time if someone is coughing in their hand in church then reaches out and shakes one of my kid's hands, yes I'm going to whip out the germ-x, sorry. Etc., etc..

On a good, more happier note: Kristan seems to be doing great after her shots and is almost caught up. Addison did have the same shots as before and had a cough while on vacation that she got over quickly. I believe she will this too! SEE I CAN be possitive, I just had to get that frustration out{I left out a few phrases to save your ears}.

On a special note: A couple weeks ago I was woke up early on a Sat. morning by Logan trying to calm down long enough to tell me what just happened to him. He first said, "MOM, I saw Grandad!"(My deceased father). O.K., that got my attention quickly! He said he saw two shadows on his floor and thought is was his dad and me, and as he looked up he saw Grandad and Jesus. After I lost it,(and picked my heart up off the floof) I had him describe each detail; keep in mind he does not lie, he does not make up things using his immagination, etc, he is a very innocent/matter a fact type of guy. The story goes that he heard a sound (that sounded like a low whistle) that woke him up and after seeing the shadows and the two standing there; he said the sound was coming from the light that was all around them. "Even around Grandad's arms", he told me. He also said my dad was all in white and looked like an angel. I asked Morgan what she saw and she saw Logan looking as if he were staring at somebody and he kept rubbing his eyes, but when she looked no one was there. Logan interrupted saying, "That's because they had already went back up to Heaven." I don't know! The odd thing is I never mentioned this story to our preist and can you believe this Sunday he talked about life after death and this 10 year old girl who saw her grandpa and Jesus. After Mass I asked Logan if he heard his talk and he answered, "Yea, that girl saw Jesus and her grandpa like me."

Even though Thanksgiving is coming soo we should remember everyday to give thanks for what we DO have...God bless!

Tuesday, November 2, 2004 4:57 PM CST

WE ARE HOME
We are back from our adventure at Florida; Kristan's Make A Wish. Where the skies were sunny at 80 degrees, and at night a 6-foot bunny tucks your children in bed. This place was a total wish, dream, fairyland, fantasy world to say the least. Everyone was overly nice, extra special, and went beyond anything to make the trip so memorable. We had excitement from the moment we opened our eyes until we fell asleep from exhaustion. We were not about to stop and let one moment get away from us that could be spent having fun. Our flight went great to and from our destination. We thought the trip was not going to start very well since Kristan and Dennis beeped at the airport. It was Kristan's Wish pin she wore and Dennis's leg brace. Of course she wanted mommy and they would not let me touch her and treated them as though they were going to be frisked at any time. (I know Kristan has that look of a hardened criminal and all.) After we arrived at the Village is was so overwhelming that such a place exists and families come from all over the world to visit. There are swimming pools, a water park, a castle of miracles, a carosaul, a gingerbread house to eat at, an ice cream shop (our favorite) that you can be served ice cream, sodas, shakes, etc. at anytime, there is pizza delivery at night, arcades, a train station, theatre, putput, and a special celebration every night. We did everything from carve a pumpkin to sitting on Santa and Mrs. Santa's lap, to watching it snow, meeting Barney personally, getting over 30 autographs and meeting up close all the characters, to going on a horse and buggy ride, to being stopped on our way to our villa by a golf cart with lights on it playing Lion King songs and offering us coffee and cookies. UNBELIEVABLE!

We went to Magic Kingdom on Kristan's b-day, the next days we went to Animal Kingdom, MGM, Sea World, and Universal/ Islands of Adventure. In between walking a hundred miles each day at these parks we fit in all the other fun; even put put with dinasaurs back at the villa. We went on pure adrinaline, excitement, and the look on the kids face as we told them each day what was in store for them. We felt like kids ourselves. Everyone was great and they made you feel like royalty. The villa and everything in it was SO clean. We walk in and there is snaks of all sorts on the table, soda and waters in the fridge, the kids had an extra large jacuzi tub to soak in after each day. The last night there they a huge Halloween party with over 1,000 guests and the theme was around the world with people from different continents; SO FUN!

The best part was we got to take Maw Maw. As you know my mom had helped us so much with everything we went through with Kristan and she deserved it so much. It was hard coming home. Not only leaving the wonderful fairyland, but it was my Dad's birthday, the first since we lost him three months ago. When you have something this fun to look forward to then it ends, plus this on top of it, and it being his b-day it was a fast trip home to reality and this weather is so ugly it doesn't help.

I WANT TO GO BACK. No one wants their child to qualify for such as a wish, and I would never want to go through what we did to get such; they just really made some kid's dream a reality.

Monday, October 18, 2004 10:46 AM CDT

DISNEY WORLD HERE WE COME!

We are leaving soon for Kristan's Wish trip and we all are SO excited! It all sounds so wonderful and I hear they treat you like royality. I am trying hard to push all greiving for my father aside to make the kid's have a great trip. It is hard because he and my mom were going to drive down and join us there and they had not done any vacationing in a while so of course we were looking forward to it. He agreed right off to go, which surprised us because normaly this was not like him, so maybe he will be there with us(I know he is always in my heart so he will be there). The other hard part is we will be flying home on his birthday. I just miss him so much!

I am excited to say my mom is going to go! We could not have gotten through any of Kristan's ordeal with out her. And she so deserves this! I am hoping and praying for good weather, no obstacles(trying not to be pesimistic), and no sickies. Morgan is home with the croup and we hope it doesn't get passed around;ugh!

I can't wait to write again and tell about our trip.

Monday, October 11, 2004 4:21 PM CDT

Two-year-old Kristan Blankenship played with her dolls she has fondly named Mommy, Morgan and Logan at the family's Scott City home Wednesday. More than a year ago she was diagnosed with a rare disease that crippled her immune system.

One-in-a-million girl finds hero at home

By Tony Rehagen ~ Southeast Missourian

There is a miniature residence within the walls of the Blankenship house in Scott City. It's a place where 2-year-old Kristan Blankenship mixes her imagination with real memories of her turbulent past that she doesn't yet seem to fully understand.

It's a plastic house standing less than a foot tall in the middle of the Blankenships' living room carpet. Inside live three plastic dolls -- Mommy and two children, a girl named Morgan and a boy, Logan.

This tiny family spends a majority of its time laying idly in the house as the maestro of its make-believe lives, Kristan, divides her short attention span between them and her other favorite toys as she bounces around the house. But right now she's fixed on them.

"They're driving to St. Louis," says Kristan, rocking anxiously on her knees as she seats them in their little green convertible.

But she and her real family -- including mother Lee Ann Blankenship, and her full-size older brother and sister Logan and Morgan -- have made countless trips to the real city over the past two years. She remembers why.

"I was sick yesterday," she explains, holding up the little Logan doll.

"But Logan be my donor."

"Yesterday" actually began at the end of May 2002, just seven and half months after Kristan was born. She was diagnosed with a rare disease that crippled her immune system and threatened her young life. Her only chance of survival was a bone marrow transplant from her then 4-year-old brother, Logan.

Sept. 26, 2004, marked the second anniversary of Kristan's successful surgery. The Blankenships have come to celebrate the day as her re-birthday.

"I got some of Logan's blood," Kristan says, running her fingers through her long curly hair. "Now I'm not sick." Worried mother Lee Ann Blankenship first became concerned that May because of a fever.

Still an infant, Kristan was consistently running a temperature around 102 degrees Fahrenheit over a six-day span. Low blood counts led Kristan's pediatrician to initially diagnose her with cytomegalovirus, or CMV, a common virus that is not considered serious.

But on June 5, Kristan suffered a relapse that eventually led to her being checked into St. Louis Children's Hospital for further testing.

Kristan's fever persisted and she became lethargic and weak. Her liver and spleen were grossly enlarged, her blood counts still gravely low. She was swollen and very lethargic. Her doctors deemed that she was dangerously susceptible to infection, yet over the next week, none of them could place a precise diagnosis. Except one doctor.

Dr. William Grossman saw the child and insisted she be tested for the rare immune-deficiency disorder known as Hemophagocytic Lymphohistiocytosis (HLH) that affects only one person out of every 1.2 million. He was right.

HLH is a disease that causes the bone marrow to produce an excess of cells, which causes inflammation and eventually penetrates and accumulates in healthy tissue and damages organs. If left untreated, it has a 90 percent mortality rate. The only known cure is a bone marrow transplant.

Kristan was immediately put on antibiotics, followed by intensive chemotherapy and steroids. On June 25, after 17 days in the hospital, Kristan was sent home.

But now that home had to be transformed into a quarantine zone to protect Kristan.

Lee Ann Blankenship stayed home, never leaving the house so she could care for Kristan and administer her vast assortment of medication. She orally fed her daughter a cocktail of syrups and pills, and injected medicine into a broviac tube that was connected directly to her heart. These medications and the steroids made Kristan swollen and weak.

The rest of the family was affected too.

Kristan's older sister Morgan, 6, and her brother Logan, 4, were kept inside, away from their friends and from playing outdoors so they wouldn't bring home germs. Gallon jugs of Germ-X antiseptic lotion were kept by the door for repeated application to hands, bodies and items brought in from the outside.

Kristan's father, Dennis Blankenship, continued to work. He'd bring home groceries and anything the family might need. But upon his return home from work, he immediately showered and wrung his hands in Germ-X.

One night, Logan got fed up.

"He came up to me and said, 'Mom, I'm sick and tired of Kristan,'" Lee Ann Blankenship said.

"'Don't say that about your sister, Logan. That's despicable,'"

"'I'm sick of her being so sick all the time,'"

Then she said Logan looked up and said, "God, please help me help Kristan get better."

Although she wouldn't tell him yet, his mother knew he'd get his chance.

'Our little hero'

What Lee Ann Blankenship wasn't telling Logan was that of Kristan's family that had been tested as possible donors for her bone marrow transplant, he was the only one who was a perfect match. She had decided not to tell him exactly what he would have to do or go through for fear of scaring him. He was his sister's only real hope.

While Kristan was prepped by her medication for her upcoming surgery, Lee Ann Blankenship would try to mentally prepare Logan for what he would endure, without telling exactly what would happen. She'd play doctor with him, laying him down and pretending to put him under anesthesia.

"Your sister needs your good cells to fight the bad guys," she'd tell him.

Finally on Sept. 16,it was time to go back to St. Louis, starting with eight days of continuous chemotherapy for Kristan. This destroyed her entire immune system in order to make way for the new one she would receive. It made her vulnerable to all kinds of bacteria, even some within her own body.

Lee Ann Blankenship remembers those eight days as some of the hardest. The chemo made Kristan very sick, with fevers up to 105 degrees, and heart rates as fast as 225 beats per minute. She was swollen almost beyond recognition, her hair had fallen out. Her platelet count dropped virtually to zero, causing uncontrollable bleeding from her nose and sores that had formed on her mouth. She was hooked to a number of machines and monitors that she would not be separated from for over a month.

On Sept. 26, while Kristan waited one hospital floor above him, Logan entered the operating room where doctors would extract 300 cubic centimeters of bone marrow from his hip, 200 of which would go into his baby sister. The procedure took 45 minutes. His parents remember his bravery, calling him "our little hero." Logan remembers it as his brotherly duty.

"I don't really know what I was thinking," a 6-year old Logan later recalled. "I had to do it, anyway. I gave her my blood and prayed for her."

After the bone marrow transplant, the Blankenship family had to hold its breath to see if it would work. Dr. Grossman said the two chief worries in such cases are the possibility that her cells would reject the new bone marrow or that the new bone marrow might attack her body. Her parents waited with her in isolation for the next 35 days.

On day 30, doctors deemed that the transplant was 100 percent engrafted. The surgery was an initial success. But Kristan stayed in the hospital and her parents stayed in a hotel room in St. Louis until Christmas 2002.

Long road to recovery

Kristan's doll family has returned from its trip to St. Louis and is now sleeping in its little plastic house as Kristan has now run off to play with her stuffed Pooh Bear.

With her curly hair curtaining her bright rosy face, she radiates the same energy of any normal 2-year old. Grossman said she now has the same chances of survival that any normal child has. She just recently scaled back her weekly follow-up visits to one every six months.

Her family can express little but gratefulness watching their daughter and sister run around the house and playing. They are grateful to the doctors who treated her, to the community that prayed for and supported Kristan, to God for his grace, and especially, to their hero, Logan.

Logan was just being a big brother.

"When the other kids say she's too small, I'll let her play Rescue Heroes or Batman with us," Logan says, sitting beside his mother. Watching his sister play, he says he takes care of all of his sisters - including a 3-month old healthy baby girl named Addison - like a good brother should.

Like a good sister, Kristan honors her older brother by naming one of her favorite toys after him. Having returned momentarily to the doll house to awake her little family. She quickly puts them back in their green convertible. This time Logan, Morgan and Mommy are going to Disney World to celebrate their maestro's third birthday at the end of September. It represents the real trip Kristan and her family will make to the real Disney World in Orlando, Fla., thanks to the Make A Wish Foundation.

Kristan said she's excited to meet Mickey Mouse, excited to show him her Pooh Bear, but most of all, excited that her "donor" gets to go along.

Logan is happy for his sister, too. He still doesn't seem to realize quite the impact he's had on her life, but he knows he did what he could to help her. After all, that's what he says big brothers do.

"When I gave her my blood, it made her better," Logan says. "It's because we have the same blood."

trehagen@semissourian.com

335-6611, extension 137

Sunday, September 26, 2004 5:56 PM CDT

HAPPY RE-BIRTHDAY TO YOU! KRISTAN GRACE! It has been two years since Kristan's transplant. I remember the day well. Where has the time gone? I hope I didn't miss anythying through worry or being so nervous about test results of all kinds or not getting infected with any viruses, etc.. I hope I hugged her enough, told her enough stories, played enough games with her, told her what she meant to me enough times, and above all thanked God enough during this two year period. Sometimes we can get so caught up in hoping and wishing for time to pass to get 'further out' do we miss anything? I think I captured all those smiles, remembered all those things she did to make me laugh, her sweet sweet personality is forever etched in my heart. I feel like I embraced each moment more so than if we had not ever walked the road we did, that day two years ago.

We went back to the place where it all took place and stayed in the hotel where we stayed for 80 days, as a way of celebrating and remembering. Yes some of the things I would rather forget but the trip was bittersweet. I would have never thought I would be where I am today two years ago, here with another child who is starting to look more and more like both her sisters. Here I held a little baby who was not sick and I looked at one who made it past all of it, and looked at two other older children who hopefully have escaped the disease. HOW in the world could I begin to thank God enough? I hope all who are blessed with healthy children really REALLY know what they have! I am glad God gave me this cross, for He knew I could carry it and above all He knew that it would strengthen me and my faith.

Thank you GOD!!!!!!!!!

That was all on the serious note, now for the funny: The kids made up a song they sang Kristan. Keep in mind the hospital is a short distance from the zoo. It goes like this:

Happy Re-birthday to you
You were reborn by the zoo
Your donor is a monkey(Logan)
Now YOU act like one too

Sorry, I had to add this since they thought it was so funny!

Saturday, September 11, 2004 2:50 PM CDT

September 11th, that really gives you that lump in your throat. What those families have been through; I could not imaigine. I know how I miss my dad so much and how it is hard to except when it is so sudden, but some of those people never even found their loved ones and that has got to be just unimaginable. They left for work and never returned, just so so sad.

Life just seems to go on and we have to learn to either go along with it or sit in despair and let our emotions overtake us and get in that ugly rut not being able to get out. Somedays are harder than others! I guess that is where our faith really steps in and even though we no longer are able to see our loved ones physicaly we know their soul lives on with God and they are very much still part of us, forever.

I have always, as most of you who know me, love to get 'signs' when I am having a really bad day. It seems to help me. And that is what I would call what happened yesterday. I showed my sister this paticular plant I got from the funeral and how great it was doing. We both commented on how good it looked. Then shortly after that we walked outside. Kristan came up to me and said, "Mommy, when grandad comes to our house, grandad is in heaven and when he comes to our house, he will give you a flower." Holly and I looked at eachother like, "o.k.". After she left and a little later that same day I noticed that plant I showed her, it had flowers that had just bloomed on it. I had no idea it was even a flowering plant since it did not even look the least bit like it would. I showed my mom it later on and she told me it was called a prayer plant; I had no idea. I thought it was pretty neat and just enough to make me feel comforted.

WE are going to Disney World next month! Kristan talks non stop about it. Everything is about Disney. In 15 days it will be her re-birthday and 2 years post bmt! Yeah! What a time to celebrate. There is a new photo to check out of Kristan's new baby sister, who she loves so so much. She can not give her enough kisses and Addison loves them! She calls he Addison face instead of Faith, so they are my Kristan Grace and Addison Face! The two older ones are having a great time at school and are loving it.

Tuesday, August 24, 2004 10:13 PM CDT

It seems to keep getting longer in between journals. School started yesterday and my sweet little man, Logan had his first day of kindergarten. Poor, poor, teacher! (ha ha!)Between him and his best buddy/cousin Daylon, they are something else. Morgan began third grade and loves it so far; it's only day 2, so we will see. Poor Kristan is more like it. She is thinking where is all the noise? She must be trying to make up for it because she has became very demanding. Poor mom. (ha ha!)

It's been a rather emotional time lately. I am not only greiving my father, who I love and miss so so much, I am having never ending questions and tears from the three older children, plus Dennis- he lost his best friend, father-n-law whom he worked side by side with for 15 years. It has been so hard on us all. I remember looking at Addison when the funeral was over and just thinking I felt so bad, so guilty for the attention I needed to be giving her was not there. I held her literaly from the time I heard the horifying news until days and days later. I would sleep with her on me(sitting in my dad's chair at my mom's) and I just couldn't put her down. She was like a much needed security for me. I don't think I said two words to her through that period, but we had each other. I felt bad; here my whole pregnancy I was so scared of her having hlh, it was hard to get extremely excited, then now this. I think I have made up for it since this has been such an eye opener.

I felt like my faith deepened so much going through this journey with Kristan, but when my dad left I really understand now what life is all about. And why we should yearn for heaven. I guess this is why we experience these sufferings here on earth to show us, along with others this exact reason for life. That our bodies are just a shell, that the soul is what lives for ever, so why do we waste time over worries over so much petty stuff?

Those of you who know Kailie will know what I mean that she GOT it(about the whole reason for life). She joined Jesus in heaven last week and now is free from all her pain. We all have no doubts where she is now and what an impact she made on so many lives here. That is our purpose, to make an impact. To make a difference in one person's life is amazing but to leave a lasting impression at an age of 13 is truly a gift; and that is what she was to so many.

It really makes me want to let everyone who means something to me know how I feel about them. My mother and my sister are some of my best friends and they have been through everything with me and I with them. There are several friends I have that are like family and it means so much to have that. I was driving, on the day my dad left this earth, (not knowing how that day would turn out) and I remember that I had just read a journal Alison(Alexandria's mom)had wrote about having good friends and how they comfort you and how thankful she was to all her friends who have been there for the Rhines. I remember thanking if I ever had to go through anything like that I would hope to have the same, that it has to help at such a bad time. Little did I know I was right and a few short hours later I really found that out; a slap of reality there.

Be a good friend!

Friday, August 6, 2004 4:55 PM CDT

I just got back 16 rolls of film, so it will be fun adding new ones on the page. This one above was taken last year, wow has she grown. We had fun celebrating her re-b-day and she had more loving family members there who are not in the picture. This year we will hopefully be at Disney on her Birthday so we may have to use the date of her re-birthday to celebrate. I can not believe it has been two years; time goes by so fast even if you are not having fun.

I will update more later. It always takes me so long to add pictures by the time I stop 200 times to do this and that.

The back of the tye-dyed shirts I made says- BMT (on the top) then (diagonally) it says SURVIVOR. Except Kristan's says BMT SURVIVOR on the front and to see what is on the back go to the photo page. Aren't you in suspense?!

Monday, August 2, 2004 2:53 PM CDT

I am having a pretty good day (if there is such in the 'greiving process') so I thought I would write. I have always been the type that either talking or writing one helps me in different cituations but for some reason the the death of my father has been paticularly hard to write about. I know this website was created to keep you informed about Kristan, not her mother grieving the loss she recently had. But for those of you concerned; it is just an emotional rollercoaster and I would like to get off the ride! I have never known mental pain that hurts so much; it somewhat compares in a sense to what I felt like when Kristan was diagnosed even though we did not loose her and she made it through at the time we did not know the future(we still don't) but knew a loss was a real possibility and the months of chemo, then bmt it was as close to death as I would have liked to have of my children be. After my dad passed away it somewhat shines some light on life showing we don't know the future and what it holds. It does make us yearn even more for Heaven so we can see him again. That is the whole point of life and we overlook that when we get caught up in such petty things we call problems.

I know it was God's plan to call him home, I know it was His plan for Kristan to endure what she did, and I most importantly realize I will grow from all this, it will deepen my faith even more and I feel that now. It really shows what a human body can endure, with the help of God's Grace. One of my really hard days; the day after the funeral and on the way to my mom's, Kristan looked at me and said, "Mommy, Grandad is smiling at me." Dennis and I looked at eachother and burst into tears, tears of happiness through my alreay sad tears I had pouring out. She does not make up things and has never told me she sees something that is not there. I feel like he is with us always and I believe that is part of our faith that death is only the beginning of eternal life.

Kristan is doing great and has just recently learned that her wish was granted. We will know more details later but Disney is our destination!We can not wait to get away. Addison is doing just perfect, like the perfect gift she is. I see now part of God's plan for Him giving her to us is to keep me sane and help me get through this.

Our family has became closer and they along with friends are what gets you through with God's help. Thank you everyone for all your words of sympathy, it really has helped.

God bless you, please stay close to your family and let them know what they mean to you. My biggest advice is live life with NO regrets!

Monday, July 19, 2004 7:15 PM CDT

Hello,
Yes, I am still here. It has been a rough last couple weeks, very, VERY hard. You never could NOT imagine how it feels to lose someone so dear as a dad, until you do. My dad and I have always been close; a daddy's girl is what I have always been. Never has the man ever done anything bad in my eyes and my mom has always said my entire life, "You are just like your dad." I'm glad now she told that. We are still unsure what took his life as of now no final report has been made, but we do know it was instant and he didn't suffer. There was less than 20 minutes unaccounted for where he was and my mom found him in their yard; cried for help and did cpr until the ambulance got there...it was too late. God I love him soooooo much and miss him as much!

Logan had gotten hives a couple weeks ago and had me so stressed out since they were not going away and to me they looked more like a rash, I am thanking God now for them since my dad came over hours before his accident to check on him to see if he thought he was o.k.. Had he not had them my dad would not have been there that day. I had asked him to make a copy of Addison's birth certificate at the store down the street for me when he left and I would follow him there so I would not have to unload 4 children for such a quick in and out thing and since it was on his way. Of course he did it, he would do anything anyone asked him, he was that way taking care of all of us our entire lives. The last words spoken as he handed it to me was, "Thank you, dad...bye." He said bye and turned around and left. I wish I would have added a I love you, but we just never know the hour nor the day, do we?

A few days later our drauma doesn't end and my baby brother has to go to the hospital for chest pains and was ambulanced. He is fine now, but all of our nerves are shot. The next day my oldest brother hurts himself and has to visit the hospital, but is fine now too. My sister and I are hoping we are not next! In the mean time Addison has gotten her first sickness and I think is getting over it.

PLease pray for our family. We will know how good Kristan's immune system is soon, I never used germ-x once for like a week(a world's record for us).

Thursday, July 8, 2004 10:26 PM CDT

PLEASE PRAY!
MY DAD HAD A SUDDEN HEART ATTACK AND LOST HIS LIFE YESTERDAY.
I LOVE YOU DAD!
PLEASE PRAY FOR THE FAMILY; HE WAS THE BEST PERSON ONE COULD MEET!

Wednesday, June 30, 2004 6:52 PM CDT

Hello,
We went for a follow up appointment today in St. Loius that was long overdo. We were scheduled a few months ago but since I was big and prego, etc. we along with the dr. decided to wait. When we drove up to the parking garage at Children's I could remember always having this sickning lump in my throat and nausea in my gut, a feeling of nervousness about her check up and the unknown on the out come of any of it especially the dreaded blood counts. This was the first time in two years we drove up and I wanted to smile; I felt at peace and knew in my heart she was o.k.. She looked great to me, she eats, plays, runs and acts like a normal healthy child; but until they tell you those results you still feel a little worried.

Her counts were awesome; WBC-7.2 HEMOGLOBIN-12.8 PLT.S-220 YEAH!!!!YAHOO!!!!! We were so happy. It was special too because she got to see her Dr. one last time before he moves out of state. Fortunately we hope we will not need him anymore and with counts like that and how well she has been doing we won't. He is by far the best we could have asked for and if we were not this far out I'm afraid we have all had to drop and on our knees and beg him to stay, but she is fine. As we drove off I told Dennis it felt like an end to the last chapter in a book.

We do not have to go back for 6 months now. We have been enjoying the summer and doing actual 'normal' things like going to Chuckey Cheese (never would I think I could look past all those germs; o.k. we went through alot of germ-x, but we went,haha!), and we have been taking them to more public places and trying to enjoy the summer. It has been three years since we have really gotten to go and do anything so we are trying to make it up to the kids. Kristan loved the rides at Chuckey Cheese; I'm thinking she will freak out when she sees Disney World. Speaking of which she may get a wish from Make A Wish, and Disney is all she talks about. We will see!

Monday, June 28, 2004 9:29 AM CDT

Hello,
As I sit and journal today I am just overwhelmed with thankfulness, that is beyond describing. Usually I find myself writing about how we are doing o.k., but how we still worry about this or that. Today I just want to sit and be thankful. Dennis and I have been married for 15 years, right out of highschool(the marrigaes that seldom last), and little did we know what God had planned for our future. We never cared to be the most wealthy, nor the most successful; except in being the best parents and spouse to eachother. All we really wanted was a family of our own. God chose to not give us one for the first seven years of our marriage even though we were so determined that we were in charge of this, not realizing only God chooses life, not us.

As the years went by we grew not only in knowledge but in faith and realized how God was the one in charge and only He could decide when we are to have children and when each life was to be born. Ones who have not experienced the pain of trying to concieve and can't, nor loosing a pregnancy may not realize so much of how thankful you become to even be able to be blessed with one child; even though many do realize they too are very blessed when they look around or know someone who hasn't been able to have any.Then for God to give us four, beautiful children who are just perfect to us, is so overwhelming!

People always ask if this is it for us. I find that so hard to answer, when I know most people would come back with a definate yes. We on the other hand, have always left it to GOd. Our dr. gave us a 2 percent chance of conceiving when we got pregnant with Kristan. You can see how we feel like God had a plan for her and now here comes her little sister. I think the answer we ususally give is, "We'll see." If it weren't for the whole hlh thing, I think I we would have many more, but when you have the torturing fear hanging over you, it is almost unbearable, yet we go on. No one wants to see another child have to suffer like we watched Kristan do, so, like I said, "We will see." God has the plan, not us.

HERE IS SOMETHING TO THINK ABOUT:

If you woke up this morning
with more health than illness,
you are more blessed than the
million who won't survive the week.

If you have never experienced
the danger of battle,
the loneliness of imprisonment,
the agony of torture or
the pangs of starvation,
you are ahead of 20 million people
around the world.

If you attend a church meeting
without fear of harassment,
arrest, torture, or death,
you are more blessed than almost
three billion people in the world.

If you have food in your refrigerator,
clothes on your back, a roof over
your head and a place to sleep,
you are richer than 75f this world.

If you have money in the bank,
in your wallet, and spare change
in a dish someplace, you are among
the top 8f the world's wealthy.

If your parents are still married and alive,
you are very rare,
especially in the United States.

If you hold up your head with a smile
on your face and are truly thankful,
you are blessed because the majority can,
but most do not.

If you can hold someone's hand, hug them
or even touch them on the shoulder,
you are blessed because you can
offer God's healing touch.

If you can read this message,
you are more blessed than over
two billion people in the world
that cannot read anything at all.

You are so blessed in ways
you may never even know.

Monday, June 14, 2004 5:24 PM CDT

WE HAVE A BABY!!!!!!

Addison Faith arrived June 10th at 6:13 a.m., weighing 7lbs. 10oz., and 20and1/2 in. long. She is beautiful and looks so healthy! Labor and delivery went great and to my big surprise was quite quick. My first contraction was felt at 2:00 a.m., and didn't get intense until around 3:30, in which I could have had her at 5:00 had she not been turned wrong, she wanted me to have to work a little to see that precious face.

Her and I are doing wonderful and I am so thankful to GOd that it brings tears to my eyes at the blessings he has given us. The children love her and Kristan is no longer the baby;wow! She is o.k. with it so far.

This is short since I shouldn't even be on here since I had to go down stairs to get to the computer, I will answer all my e-mails later when I recover more. I just wanted to let you all know the awesome news.

As I just looked back and reread what I wrote I noticed the date. This was Kristan's diagnosis date two years ago; life does improve as we think we know it at the time. Praise God!

You can go to www.sfmc.net, then Baby Gallery and click on Addison Faith

Monday, June 7, 2004 6:56 PM CDT

I know I haven't kept the journal up like I used to, but I feel like our news is usually boring right now. Believe me, I love boring; that means all is well!
Kristan was due for her counts to be done soon but since the baby is due anytime we decided to wait until after the new arrival to make the two hour trip to see her doctor; of course with his o.k.. Three more months and she will be two years post bmt. I can not believe it! We heard that the hot air balloons and the fair they have will be there in Sept.. This is when we were in the unit two years ago and we watched from the ninth floor as her first chemo was administered. Dennis thought it might be nice if we go up there then.

Kristan has received her second set of immunizations and did great. I never thought I would go forward with them and be too frightened to, but we have and so far so good. She will be caught up soon on them. I will, however be very nervous for Logan receiving his mmr in August before school starts.

So many emotions are on our way. First a new baby soon, real soon. So we have the adjustment of Kristan not being the baby, which her and I have such a bond I'm not sure how she will like sharing that. Not that the other two don't share mommy too, but she is a real 'mommy's baby'. But do you blame her, after what she has been through, and me holding her constantly and never leaving her side, nursing her until she was two in order to try to give her all the best nutrition and comfort I could? All this I am sure is part of it. It doesn't matter though, I love her so much she will not be pushed aside, by no means when the baby gets here. She just may not care for the crying since she tells me things like the blow dryer gives her a headache.
Next we have our one and only son starting kindergarten, which is a tear jerker for me anyway, let alone our extra worries we have to deal with. So Kristan will go from being the baby, to the big sister and her brother not being there all day when he starts school. She loves Morgan too and they play constantly. There is just alot of adjustments coming soon.

IF I don't go into labor by Friday they will induce me for fear that the baby will be too big for me to have. I had a scare when I had read one parent's story of how she measured bigger signaling that the baby's abdomin was a couple weeks larger than anything else, later was born with hlh. Unfortunately the child did not make it. When I learned of this and knew I have been measuring 2 weeks bigger, needless to say, I freaked! I called and they told me the baby's abdomin was only 3 days bigger than everything else and they only worry if it would have been 2 weeks bigger than the head, etc.. And that they did look at the liver and it looked normal. So I had a little more peace of mind. I go back and forth on freaking out and staying completely calm and full of peace. At the moment I have so much faith that I know she will be fine and I can not wait to hold this little gift from God in my arms.
She seems to already be such a miracle. I never thought I would get pregnant again,nor the doctors, then this is the first in 9 pregnancies that I have had no problems(5 ended in miscarriages). It has been almost scarey, like I keep waiting for something to happen. I had a good chance of toxemia, like with Kristan and I am doing great, I am completely amazed! Then I realise this is a gift from God and He has a plan. I believe she will be perfectly healthy!

Please keep us in your prayers. When I checked my mails today I had so many wishing me luck, sending their prayers and possitive thoughts; THANK YOU SO MUCH for that!!!!!!!

My baby boy turned six years old yesterday! Does he even know how much he has done for our family in his short life, donating his marrow?

Thursday, May 27, 2004 2:43 PM CDT

Hello,
I know it's been a while since I last updated. Kristan continues to do great! We have battled a couple colds, but each time she surprises me how fast she recovers. Most post bmt patients worry more about viruses, etc. when their immune system is still being compromised. Our story is a little different, since a virus(CMV) is what maybe had brought Kristan's disease to the surface. You see not only do we get concerned if her immune system is up to par to get past it, or is it going to settle in her lungs and what damage has the chemo done to them; we also worry will it do anything else? Hlh usually doen't return after so long, but the fact that she had her brother's marrow kinda makes us a little uneasy since it was never definate that HE didn't have it. But all in all I have stayed really possitive and when you see that sweet face each morning and hear that precious voice you just want to shout, "Thank you God!"She tells me, "I will love you forever and ever." My heart melts when she says such.

WEll, the thing around the Blankenship household is this new arrival that is soon to happen. At a recent ultrasound we found out the baby is a pretty good size already so the doctor is not letting me go past June 11th. This thrills me, since I was so hoping not to have her on Kristan's diagnosis day(D-Day). He doesn't seem to think I will go that long anyway. It is getting exciting! I just can't believe at this point I'm not a basket case with worry about if this one will be o.k., have hlh, etc., etc.. I have a since of peace, which is so nice. I really feel like she will be o.k.. I feel like she is already a little miracle/gift and I know God will make her disease free; we have prayed so hard!

I think I can either sit here and dwell on all the 'what ifs' and how we could have to go through it all again, the tramua to the other children, me having to not only leave the other two but Kristan too(which requirs more mommy time), and the fact I would always have two children facing life threatning ordeals, OR I can have a possitive attitude, I can PRAY, and I can have FAITH and know God will take care of everything and we are not the ones in control. I believe in praying and believing and receivng as I have said so many times. God has blessed us so much; how can we possibly ask for more?

When you have went through a BMT or chemo treatments and have a child diagnosed with a life threatning disease it seems a to be all you think about and wonder if all the worry will lift. It does! Also when you look around and you hear of a child being abducted, or killed in a car accident, or any other many things that happen everyday it makes me stop and think, "Did they have the same worry I have? No, but yet they lost a child anyway." I think of this often especially when I wonder if I will always worry about Morgan and Logan ever having hlh triggered as an older child, I think alot of other things are out there to worry about. It makes me feel better in a 'strange' kinda way IF that makes since?! And lets not even go there when they become teenagers; the worry!YIKES!

I hope all of you have a good Memorial Day, I will have all the families we have met who have lost a child in my heart and in my prayers. Thank you for your continual checking in on us and the prayers; I know this is why I am calm (at the moment). Baby Addisan Faith will be here soon. Not sure on the spelling yet, all three of our other children's names end in 'an', and I know usually you spell Addison like that, so we will see. We may not know until she is here.

Sunday, May 9, 2004 10:11 PM CDT

HAPPY MOTHER'S DAY!

I hope all you mother's out there have had a great day and know how special you are. You are so special that God has blessed you with the ability to have a child to call your own, rather you gave birth to the child yourself or if God brought that special child to you through adoption; knowing you were perfect for them, rather your child is here with you now on this earth or if that child is so special as to live with God Himself, or maybe you are an expectant mother who dreams often of holding that child she carries with her in her whom; in her arms and loving it with all that is in her. You never realize the beauty in being a mom, nor how much you mean to your children until certain days like today rolls around and you see the love in their eyes and in their hearts and know they too would do anything for you; as you would them.

The day was beautiful, and it began going to church with my wonderful mother. She is the most caring person and has always put us first. She has always been there for all of us and would do anything for any of her children. I could not say enough good things about her; all that know her would agree. I was glad I was not in a very tearful mood today in church; in which I could have been very easily. I was more like crying inside and keeping a smile on the outside. There was a lot of talk about mothers and all they do, but when he said that some of you may have had a sick child who you have stayed up with at night. I thought I would burst into tears thinking of all the nights and days in the bmt unit I spent literally holding Kristan for 45 days of it. You don't care if you eat, if your back hurts, if you are totaly exhausted or if you need a shower that day; what you care about is that child. The love is indescribable. He also goes on to say how some of you may have lost a child. Then all I could think of, as my feelings shifted from feeling so sad for what we had went through(knowing how close we were to that) to what some others had, was Alison who had lost her dear Alexandria, Karen and her baby Anna, Jacob's mom Lisa, Amariah's mom Chris and several others that we have met. It left me with being even more thankful for what we have than I could ever describe.

As I sit there with all these emotions going on inside I feel this unborn child moving inside me; another gift from God. No, we don't know if this child will have the same aweful disease of hlh like Kristan had. What we do know is if God only gives us this child for a day, then it will be a blessing, if we are fortunate enough to have the baby be free of the disease all together then we will be the most fortunate happiest parents around. We will be so very blesssed and so very thankful. I think we have a good chance at having this child be healthy; for one ALL things are possible with God and we are praying and we KNOW for a fact God hears and answers our prayers. We are having total faith.

Please pray that this one will be healthy and disease-free. All of you have been there throughout our journey with Kristan and what helped get me through was knowing there are people praying and that God will hear them; please continue to do so.

Friday, April 30, 2004 7:14 PM CDT

Hello,
Things are going much better today; I think. Morgan once again complained of headaches and this time told of some 'fuzzy stuff' she was seeing before her headache, she also tells me her left side hurt(which made me completely nauseated wondering if it was her spleen). I had her lay back and show me exactly where it hurt and when I barely touched it she moved saying it hurt so bad. As she moved I could have swore I felt something swollen(it was probably her lung protruding as she sat up) but it put me in a panic.

Before Kristan's dx I always heard of families who received bad news on their child and wondered how they could possibly sit there and listen without hitting the floor. I think a mechanism of some sort kicks in and is almost like a drug and gives you a dull, calm, 'dizzy/kinda out of it' feeling; I think it is called fear or shock. I remember this feeling well; when I heard on the phone the first time Kristan was being sent to St. Loius, when they suspected what was going on, and of course the diagnosis itself. I felt myself slowly slipping into that state. Luckily we were due to see her Dr. in the next hour or I would have began to panic, since she would not let me feel again.

Thank you God, nothing was swollen and her appointment went well. Only an ear infection/sinus infection. I think this is like the second one she has had in her 8 years of life; needless to say I was relieved. Migraines are most likely the other culprit.

I just wanted to update since I just added a new photo. She has grown so much! I love her and my other two with all my heart and only ask God to keep them heatlhy; along with this unborn.

Thank you for checking in on us! It really means alot!

Thursday, April 29, 2004 10:03 PM CDT

Hello,
I think Stress has hit our household again once more; notice that is Stress with a capital S. It is not Kristan that has warranted the worry(this time!). I will first start with saying she was actually the only one in the household who fought off this respitory thing with out it turning into a bronchitis of some sort. Dennis has had two rounds of antibiotics and was on the verge of pneumonia, broke out in a rash of some sort causing hives and his eyes to swell. That was a trip to the emergency room, but he is better now. Tomorrow I am taking Morgan in due to she may be having migraine headaches and she is only 8. It scares me to death to think I hope it is ONLY migraines knowing other more life-threatning problems that could be going on; of course the hlh comes to mind since in some it presents neurologicaly first, but we won't go there. I went in for an appointment today and I am measuring a little larger than normal; bigger baby? closer due date,yikes? or something more serious?

Sometimes I feel like I could burst, but I have to keep praying and having faith that God will get us through this. On a good note my precious Morgan made her First Communion and it was really beautiful. All that went through my mind, was "Thank you God that I am here to see this and not on bedrest, and most importantly she is here with us to do so." It was a very special day.

Please say prayers for us to get through these next months with all sanity in tact, and everyone to improve. Kristan keeps my spirits up with her sweet nature, always making me laugh. Logan is so comical too; he ask me to eat him so he could be in my belly so he could see the baby. Morgan; she is so silly too, I have always heard those who are 'book smart' lack in common sense cituations, lets just say she is pretty much a straight A student, bless her heart.

It never ends around here and I am feeling the stress.Better close for now, I have many prayers to say before I crash from exhaustion!

Monday, April 19, 2004 7:45 PM CDT

Hello,
It has been a while since I updated; most likely the longest I ever went. My computer crashed and I have not been on here in weeks. It was really hard not being able to check in on all the families like I usually do so I am playing catch up on that and all my e-mails. I am sorry it has taken me so long to get back to you.

Kristan is doing good. She is just getting over a virus and has done great. I did take her to the doctor after two days of the coughing, snotties, etc. just to get a jump on it; hoping it would not turn into what all the other children she was around on Easter had turned into. I am thinking if healthy normal children are having so much trouble with it, it just made me very nervous on how she would do. Not knowing how good her immune system is or her lungs after all the chemo she was on. We actually saw a doctor that was covering for her regular peditrition. She looked her over and stated that if she was a 'normal' child she would just send her on her way and say she must have a virus but asked my comfort level in treating (rather to do labs or antibiotics). I was glad for her concern but said no to the blood draws, but agreed on the antibiotics (not sure if she needed them). I just wasn't ready to test her and see how bad she would get before starting them; I figured after all she has taken a little antibiotic would not hurt either way.

We have received great news since I last wrote on my pregnancy. I did have a low lying placenta that could have led to a lot of complications including bed rest, early delivery, hemmorage, and eventual c-section. I was told most of the time it would move up, so I just thought it most likely would not since I always fall in that rare statistics. God has answered all our prayers. The placenta has moved up all is going great now; normal that is. I am always at awe at all God has given us! Could it be possible that this pregnancy continue so well and we eventual deliver a healthy child?! I think ALL things are possible! I hold on to that!

I feel bad that we had cancelled her pft because we under the impression we would be on bed rest, but actually we would have had to do so anyway because she has had the respitory stuff twice lately so the she didn't need to be sedated when she wasn't breathing so well through her stuffy nose, plus she is at a whopping 33 pounds; this was after not eating well for a few days.

Kristan continues to make me smile and laugh every single day. She is quite a mess at the same time. When she went to one of my appt. with me in the dr.'s office she goes around trying to touch as much stuff as she can saying," Can I touch this, mommy? This? This?" You get my point. I think she is making up for all those months of not being able to touch anything. We are still catious, and continue the handwashing/germ-xing, and I still swear by it. Logan and Morgan had something several weeks ago and it lasted for a few weeks and she never got it, which amazed us; so it does pay to go the extra limit.

Morgan makes her First Communion this weekend so it will be a busy weekend and we hope all the family is well for the celebration!

Tuesday, March 30, 2004 9:06 AM CST

Hello,
It is a beautiful day! Things are going a lot better than last week. I did not even feel like updating because I was just stressed, and it seems to be over nothing(I tend to do this alot).

It started with Kristan complaining about it hurting when she went to go potty or even if she wasn't she kept telling me it hurt 'down below' (Oprah loves it when people call it this). We thought it must be an urinery tract infection so we took her in, meanwhile she was starting to have cold symptoms and just not feeling well. She kept telling me this and that hurt; especially her knees (she dives down on them so I don't doubt they don't hurt constantly). We go in and try the cup method and it didn't work so we had to use a cathater; was not fun, she screamed so hard. After they checked it our regular peditrition comes in and tells me she has an elevated white count in her urine and begin antibiotics. O.k. I DO NOT like hearing the words 'ELEVATED WBC' in any part of my child after what she has been through, I think the rest of what came out of her mouth sounded like, blah, blah, blah, because all I heard was the wbc part. They ran cultures to be sure and nothing shows up; I was hoping for a simple UTI, so then I panic. Back to the day we took her in; we were waiting on the prescription and Kristan starts crying and when I look at her, there was blood coming from her gums. Come to find out she had just poked herself with a sucker and caused the bleed; it stopped right away. Just every little thing was causing more worry than usual. Of cousre she was sleeping alot too but she was sick, so this was normal.

To sum it all up she was remarkably better after the first dose of the med. but she also was given a cream that was the most likely cause of the quick improvement. It is puzzling because she had symptoms like an UTI but nothing grew and she has not had one single accident in her pants since she started the antibiotic. She feels great and kicked the cold in a short 2 or 3 days; her new immune system constanly amazes me and I swear they added some kind of turbo charge in there with it. Her brother, Logan seems to always get the same virus she does at the same time and they react the same, it is really funny how that works. Logan even gets excema in the same exact location she does; armpit and elbow. Yesterday Logan told Kristan, as he hugged her, he couldn't live without her. I thought I could have cried and of course HE didn't know what he was saying. I was thinking it was the other way around.

As I say things are much better and my worry went down once I spoke with her dr. in St. Louis, he always reassures me and I felt the stress lift when I heard this can be a normal thing in little girls. I love NORMAL! I don't think I would have been as stressed if she would have only had one thing going on but when it hit all at once and she is now actually able to tell me what hurts, it just breaks my heart. I am sooo glad she was not this age at time of the bmt.

Kristan is just so sweet. She is always saying things that make me laugh. She'll either grow up and be a doctor or a comedian;haha! I tell her that she cracks me up and she says, "I sorry mommy, I not mean to, I not crack you up no more." She also goes around giving everyone flu shots, and giving med.s. So we will see. Laughter seems to be the best medicine so maybe the two can be combined someway.

Please keep all the hlh children in your prayers that are going through the same battle Kristan did a year and a half ago(can you believe it has been this long?!). Zachary is in the bmt unit and soon to receive his life saving marrow, the last I heard Koryn is soon to be discharged and doing great, Alexandra and Kharisma continuely improve. Jeremy is doing so well too and is past the 6 mo. point; YEAH! Thank you for all your prayers and support. Thank you God for giving them all a second chance at life!

This page was originaly started to keep family and friends updated as we went through bmt, now it has turned into more of a helping others who are either battling the same disease or ones who have went through a bmt for other diseases. I love offering hope to others; it makes it feel like what happened to us had a true purpose in helping others.

God bless!

Tuesday, March 16, 2004 10:12 PM CST

Hello, and where did the spring time weather go? It is freezing over here!

Kristan has started meeting another one of her many big milestones; she has began immunizations;uugghh!! I was so leary, so scared, so nervous about beginning them and even questioned myself several times over if I should even have them done at all(then I am more scared not to). I even waited an extra 6 mo., but mainly to let the flu season end before I had to take her in. She did really good, no fever or redness at the site. So far so good. It is so frightening because I have heard from a few families who swear their child's hlh was either triggered by or caused by the vaccines. I have read of a 5 yr. old going in for his kindergarten shots and becoming ill only to find out he has hlh. I do NOT like that story, but the thing about that one is he received the chicken pox shot, which is live and mostly like the one that triggered it (he most likely would have gotten it once he got chicken pox reguardless of the shot). I do not look forward to the chicken pox days in my household; I will be a total basket case, can you immagine? Especially when they all run the week long fever. One thing about it is when and if they do all have it and recover, I will know most likely that they are all fine and healthy children; hlh-free.

The other news is Kristan's growth on the chart. First I will tell you at 18 mo. old, a year ago (wow), she was not even on the chart for her weight(she was under-weight)and in the whopping 5th percentile for her height. Are you ready for this improvement?.... She was in the 90th percentile for her weight and...80th for her height!!!!! Can you even believe that?! Her head circumference was low but the dr. was not worried and said she seems to be developing normaly in her mental developement. So I suppose I won't worry about that.

She is having a little problem with her eyes staying red after that pink episode so we are trying allergy drops and will go from there. I was hoping it wasn't a sign of something bad like gvhd, but at this point it isn't looking like that.

Please keep us in your prayers, even though Kristan is doing so good now and seems to be on her way to a healthy new life of course there are always complications that can come up as a result of the bmt itself, and I do not reading all the long term complications; we will just have faith she will be fine and continue to be a survivor and an inspiration to all who are going through and fighting this disease. Somedays I get in that 'Will the worry ever end?' mood, so I really need strength for these days ahead; the baby we are having(including the delivery and the possibility of hlh in this one), the fact my son will start kindergarten(of couse saddens me at the same time scares me with him getting his last shots), and just the continuing concern and worry over long term complications; as I said somedays I wonder if the stress will ever end. Then there are the days I feel like everything is great in the world and I talk myself into not worrying about any of it; especially the things I have no control over.I pray for strength!

Please keep Jeremy(who is doing great post bmt), Zachary(who is about to go in to have his bmt; his web-site is off of Jeremy's-I wish I knew how to add more sites), Koryn(who is still in the unit but doing great and has engrafted), Alexandra(who is 100 percent engrafted;YEAH!), Teddy(a newly diagnosed case), Kharisma(doing good post bmt) in your prayers. These are the hlh children who are encountering the journey Kristan took a year and a half ago. I pray they all have the same awesome results we have and recieve the same gift from God a chance for a new life!

God Bless!

Wednesday, March 10, 2004 2:06 PM CST

"PRAY FOR SUNSHINE; BUT ALWAYS BE PREPARED FOR RAIN!"
This is a song Morgan learned in school and it plays over and over in my mind each time she sings it; it sounds like the story of my life, yet I am not good at preparing for the rain part.

Kristan continues to do great, constantly impressing me with her vocabulary and imagination. She is just so precious is the only way I can describe her.

We were due in April to have a pft and the way it stands now I am cancelling it because of how far along in my pregnancy I will be. The travel along with me trying to hold on to a two-year old that only wants mom while they try to sedate her (the kicking and fighting you) just didn't sound like a good idea since by that point I may be on rescrictions and should not even be lifting the 33 pounder. We are waiting to see if we may have to cancel her follow up blood tests in May as well, depending if I am on bedrest at that point. If so we can have the blood draws here and faxed up there. I always feel better with her being seen up there but we will do as we need to.

I have been in one of those really 'deep' moods today thinking of all the many blessings that have came out of this terrible tragedy we had with Kristan and her disease. I have just learned so many things from this precious child; I could not begin to write them all down.

When she was just a baby at 6 weeks she had so many allergies going on to everything I would eat and since I breastfed and thought it was what was best for her I did without all the allergen foods(milk, soy, beef, tomatoe,berries,peanuts, egg) before we could decide exactly what it was causing her cramping, diareahha, and blood in her stool. We tried a few
special formulas and they made things worse, the best was when I did without. Later when we knew of her disease we were sure it was something to do with her overactive immune system and eventually we were just milk and egg free. This taught me such sacrifice, to know you had to do this for your child even though it was so hard.

Kristan taught me how to pray, beyond anything I ever could immagine. I felt like I was praying night and day every single minute, begging, down on my knees,and even asking the strangers in the elevator to pray(I got quite delirious with no sleep and the horrible news of the diagnosis; walking the halls in hospital with my eyes partially open from the swelling of so many tears shed repeating either the Rosary or any prayer I could put together. To say the least all the many sleepless nights were spent in prayer to only bring us closer to God and increase our faith.

Kristan not only taught us to not take anything for granted, to live everyday like it was your last, and to be so very thankful for all the little things. Even the small things like going in a store or in a crowd anywhere, just going outside even(being able to touch the grass) just brought on a total different meaning. Instead of looking forward or planning for years ahead there were days we lived hour by hour and this really made you thankful for every minute life gives you.

We met so many people and greived with them, we also saw some receive a miracle like we did. To witness one miracle, being your own, then to see others being cured is just so amazing. Now our days are still filled with prayer constantly thanking God for what He gave us. To sum things us Kristan taught us sacrifice, to believe and have total faith, and to witness a miracle.

We went to see the Passion the other day and it was unbelievable. It really makes you not want to ever complain about anything. ONE of the many parts that really got me was Mary remembering back to Her Son being young and falling as she watched him fall with His cross, you always want to help and comfort every pain your child has...sometimes we can't; we can just do all we can and leave it in God's hands as she did.

God bless!

Wednesday, March 10, 2004 1:42 PM CST

"PRAY FOR SUNSHINE; BUT ALWAYS BE PREPARED FOR RAIN!"
This is a song Morgan learned in school and it plays over and over in my
mind each time she sings it; it sounds like the story of my life, yet I am
not good at preparing for the rain part.

Kristan continues to do great, constantly impressing me with her vocabulary
and imagination. She is just so precious is the only way I can describe her.
We were due in April to have a pft and the way it stands now I am cancelling
it because of how far along in my pregnancy I will be. The travel along with
me trying to hold on to a two-year old that only wants mom while they try to
sedate her (the kicking and fighting you) just didn't sound like a good idea
since by that point I may be on rescritions and should not even be lifting
the 33 pounder. We are waiting to see if we may have to cancel her follow up
blood tests in May as well, depending if I am on bedrest at that point. If
so we can have the blood draws here and faxed up there. I always feel better
with her being seen up there but we will do as we need to.

I have been in one of those really 'deep' moods today thinking of all the
many blessings that have came out of this terrible tragedy we had with
Kristan and her disease. I have just learned so many things from this precious child; I
could not begin to write them all down.

When she was just a baby at 6 weeks she had so many allergies going to
everything I would eat and since I breastfed and thought it was what was
best for her I did without all the allergen foods(milk, soy, beef,
tomatoe,berries,peanuts, egg) before we could decide exactly what it was
causing her cramping, diareahha, and blood in her stool. We tried a few
special formulas and they made things worse, the best was when I did
without. Later when we knew of her disease we were sure it was something to
do with her overactive immune system and eventually we were just milk and
egg free. This taught me such sacrifice, to know you had to do this for your
child even though it was so hard. Kristan taught me how to pray, beyond
anything I ever could immagine. I felt like I was praying night and day
every single minute, begging, down on my knees,and even asking the strangers in the
elevator to pray(I got quite delirious with no sleep and the horrible news
of the diagnosis walking the halls in hospital with my eyes partially open
from the swelling of so many tears shed repeating either the Rosary or any
prayer I could put together. To say the least all the many sleepless nights were spent in prayer to only bring us closer to God and increase our faith.

Kristan not only taught us to not take anything for granted, to live everyday like it was your last, and to be so very thankful for all the little things. Even the small things like going in a store or in a crowd anywhere just broght on a total different meaning. Instead of looking forward or planning for years ahead there were days we lived hour by hour and this really made you thankful for every minute life gives you.

We met so many people and greived with them, we also saw some receive a miracle like we did. To witness one miracle, being your own, then to see others being cured is just so amazing. Now our days are still filled with prayer constantly thanking God for what He gave us. To sum things us Kristan taught us sacrifice, to believe and have total faith, and to witness a miracle.

We went to see the Passion the other day and it was unbelievable. It really makes you not want to ever complain about anything. ONE of the many parts that really got me was Mary remembering back to Her Son being young and falling, you always want to help and comfort every pain your child has...sometimes we can't; we can just do all we can and leave it in God's hands as she did.

God bless!

Monday, March 1, 2004 2:08 PM CST

Just a quick note to say that Kristan has handled her first real cold really great. Actually better than I did. I keep thinking does she really have it or is she just getting it, and now I THINK it is over with; wow! It was pretty scarey until she has fianlly had a virus and to see what her immune system would do and so far so good. I am, however, not about to brag because as soon as I do...you know how that goes! We are all much better, physically and mentally (the sressing I had last week has improved-yeah!)

I had added this new pic of Kristan trying on one of her summer outfits that I have been making. It's the first time I have sewn for her and it feels great, thinking I can look ahead and know she will wear them and be here with us. Last year I was too afraid to even buy ahead, which sounds crazy, not that it would add to any pain and greif you would have; it was just hard to make myself for the first time buy a season ahead. If that makes any since.

Please keep Koryn (who is haivng her bmt today), and Alexadra (who is doing great post bmt but continualy recovering), and Zachary (who is going to have his bmt soon) in your prayers. These are all hlh families and we know exactly what they are feeling right now and it is overwhelming to describe. We hope this spring brings new life for them all, in a different since.

Have a great day; it's suppose to get up to 67 degrees today;wow!

Thursday, February 26, 2004 8:19 AM CST

Hello,
Things are much better around here. Logan's illness was nothing and he only ran a fever one time and was perfectly fine the next day. Oh I love his immune system; hope it works as good in his little sister. Since she has it now! How could she escape it? The question is how has she escaped all the ones that have went around and her stay well? I am guessing all the prayers! This is really her first cold since her bmt (actually since before that since she didn't get any viruses except cmv in the unit). She has had two occassions in the last year and a half that she took antibiotics. Once I took her in because her nose was pretty cruddy and was bleeding and they said she may or may not be starting a sinus infection and I think our peditriton here is more leary with her now so she put her on them and she did fine. The next time when her nose bled I just called and they treated her the same, I probably overreacted (imagine that, those who know me!). So really she has been very healthy and may or may not have needed those to help her. This is the first time she has had a cough; I hate coughs! I like it as much as I like fever; it just makes me think pneumonia. I'm sure she will kick it as her brother has.

She is actually doing good today and hasn't acted sick at all, even though yesterday she was so whiney (you could tell she didn't feel well). The problem we are having is getting her take any cough medicine. She has this attitude like; "Look I've taken enough for me and you both to last a life time!" I am just so glad she was not this age going through the bmt and having to force all those med.s down. She lets you put it in her mouth, she just doesn't let it stay there (her brother taught her how to spit; wonderful!).

We go in April for another ultrasound to determine plan of action with the placenta, then we have a trip to St. Louis to have her pft done if I am not on bedrest. This was the test I am not looking forward to that I just feel is not going to work out since she is border line on being too big. They had to double dose her last time to sedate. In May we go back for blood counts and may do one more follow up three months from then; bringing us to her two year out point. YEAH! From then I'm not sure how often we will go; I am hoping once a year, wouldn't that be great?!

Kristan can have her Make a Wish anytime after April 26, since she has to be two and a half (it used to be two) but the problem is it takes a while to plan and I probably won't want to get that far from the hospital being 8 mo. pregnant. So if we do it after the baby is born I will be very nervous about going too far too soon since Kristan first showed hlh symptoms at 3 mo. and most of the time the ones who have it will show around the same time if not sooner. It may be next spring before we can go, but maybe not. I was hoping this fall. She along with some help and encouragement from siblings wants to go to Disney. I can't wait for a vacation!

Tuesday, February 24, 2004 8:21 AM CST

Hello,
I am hoping this day is better than yesterday; what a stressful one! It starts with me going to get Kristan out of bed and finding blood all over her sheet and pillow, not to mention smeared all over her little face. Her nose apparently bled last night for some reason; hoping it was the dry air. It doesn't matter why it did it is not something you like to see happening to any child especially one who has had low platelets and a disease before. She went on to have another one in the day time but it stopped right away. My day goes on to realize I am getting sick (I kept denying it but once the cough and fatigue, etc. start you have to admit maybe I am) and I feel lousy. I would not complain over a simple cold but it is nerve wrecking trying to #1 keep Kristan from getting it and #2 with a low lying placenta a cough can cause you to strain and cause the bleeding to begin. Which could turn bad, meaning early delivery (it's way to early) or hospitalization and total bedrest. Next my day goes on to find Logan on the couch (he played all day like nothing was wrong) with fever. Do you know how much I hate fever?!

Someone reading this that doesn't know about the disease Kristan had nor the severity of it, not to mention the genetic part that could affect our other children would most likely think I'm quite crazy for freaking over a fever or a cough or a bloody nose. Or the fact that Logan was the donor, what if he really had this underlying disease too? I know he most likely doesn't but when I found a rash on him the day before I was so hoping a fever would not follow and here it is! STRESSING OVER HERE!!!!!

He seems to be better this morning, thank you God! Kristan is still sleeping since Morgan got a ride to school today from her dear Maw Maw. So far we all have had this ugly cold but Kristan; I'm waiting. I know she SHOULD be able to fight it off but it seems to be settling in the chest and I know healthy children having trouble with it.

On a note on how my day ended yesterday(by the way was it like Friday the 13th or something?!) Kristan was sitting on this bench at the table and made a dive for her sippy cup as it went off the edge; she landed on her head. This is actually the first time she has ever hurt herself, not counting breaking her leg. It was her first boo boo, o.k. besides the surgeries, the hundred thousand sticks and prodes and bruises from having 0 platelets and simply picking her up.... o.k. o.k. I think you understand, anyway she was fine after my heart started back up we all went to bed.

Oh, I hope it is a better day!

Wednesday, February 18, 2004 4:59 PM CST

Hello,
Kristan is doing great. We are just trying to keep her well and her sissy has some little virus; so it's constant washing of hands, etc.. I will be so glad to see spring come!

I was fortunate enough to be in the delivery room when my dear neice was born last week. It was quite an experience and not exactly like watching Discovery Health; it had a little more of the 3D effect, haha. Mom and baby are doing wonderful; what a true miracle the whole birthing process is. I thought I would be totaly overwhelmed with it being my brother's child, the fact I was there and witnessing the actual birth, etc. plus me and my pregnant hormones, but I did fine. It was definatley amazing but when I saw all was o.k. and then I heard the nurse say, "This is for the collection of cord blood." I thought I would lose it then; how emotional was that? All I could think of was little Jeremy from New Jersey and all the other children whose families I have met along this journey, that cord blood has saved their child's life. Katia and Dakota only had one match in the whole wide world; can you imagine? I am very proud of them for their donation and I am sure plenty of you out there can relate. It is not that difficult to do just ask your dr. for details and they will send you a paper to fill out ahead of time and it will go straight to the nearest cord blood bank; no cost to you. Just watching a child be born then to know that child could give a life saving support to someone one day was bittersweet.

Congratulations to the Laws family on little Trinity Love, and thank you for your unselfish donation.

Monday, February 9, 2004 5:52 PM CST

Oh what a stressful week! But it is starting to settle down and the stress level is slowly going down; didn't say gone completely...is it ever gone for any one?

First off we had an ultrasound with the measuring of evrything and looking closely at the baby; and all looked fine. I on the other hand may or may not have something going on with my placenta (placenta previa) that 'could' turn into complications that would require bedrest, worse hospitalization, even worse transfusions to support the baby and I and possible early induction of pregnancy if it came to- if it was going to be more harmful on the baby or myself than to take the baby prematurely. We will know in 8 weeks what plan lies ahead if no problems arise before then. We will just hope and pray for the best and the placenta to move uptown. By the the way all who are wondering what the baby is suppose to be...it is suppose to be a ... GIRL! Yeah for Morgan and Kristan, poor Logan; he hasn't a chance in a house with 3 little girls. He's so sweet though and said he would love either (good thing).

Next we went to St. Louis for the normal blood draws that have me in a stress mode until I hear the report. First of all it was so busy at clinic and we waited an hour before being seen. I'm NOT complaining on the waiting part, the bad part was sitting and seeing all the newly diagnosed children. It was very sad to see thier faces. One thing you could see was hope in the parent's eyes along with the pain; I could imagine. Most of the small ones you would never known were sick, if it were n't for their missing hair and swollen steroid faces, they are so resilient.

Kristan was Miss Attitude by the time we went back there and was not cooperative for the resident at all and told him to stop and stupid this and that. I was hoping when her dr. came in she would change that attitude and she did (somewhat). She calls him Dr. Bill and I think she really likes him and trusts him; I guess she knows we all feel that way. She got a good bill of health and all counts were good. The only thing (isn't there always a but), this time it is not a big concern but her liver enzymes were slightly elevated. It was not much at all and not as increased as it was 6 mo. ago; but 3 mo. they were normal. He is not at all concerned about the disease coming back; our only concern will be gvhd of the liver. This can sometimes happen in one area or organ, like the liver. The good news was her billi was good so we will watch her and if she turns yellow we will take her in. I'm thinking any change from the normal flesh clor would require a trip in for me(haha).

All in all she looked great and I'm not going to worry about these small liver levels being off. I could tell the dr. was not worried at all and gvhd is something we will always watch for for the rest of her life and fortunatley she SHOULD never have a severe case, hopefully because of her sibling donor.

I will close for now, we are having heartburn, I mean super nachos for dinner(haha), so I better go. Can you tell stress makes me somewhat delirious? I can either laugh or cry so today I will LAUGH!!!!!

Wednesday, February 4, 2004 2:50 PM CST

Hello
I know it has been a while since I last updated. There is not a lot to tell but since I did finally get a year's worth of film developed I wanted to add an updated picture. I just can not believe how normal and healthy she looks to me. You can look at each month and literally see improvements still after a whole year post bmt, a constant look of better health. I have been scrapbooking and going through old videos; trying to get some order going. We came across a tape labeled 'Kristan in the hospital' and Dennis and I both assumed her birth so we stuck it in not realising it was her bmt unit stay. We have never watched it before and my mouth about hit the floor seeing how grossly swollen she was. It hurt me to even see her like that, how on God's earth did we get through that? I am not exaggerating when I say her face could not have stretched any more, her eyes were little slits she could barely see out of, and her nose; I'm surprised she could even breathe out it. Her feet; well she could not even stand on them. I guess since we were there everyday it was so gradual to us. We, at the time, didn't realise how bad she looked. We knew how bad she felt, but now how pitiful she looked.

I know alot of the hlh families I speak with read my updates and I am not saying any of this to scare any of them because I know plenty of children that have went through it and not get as swollen and as bad off as Kristan had it. I think it had to be that she had a severe reaction to atg (a chemo drug they give that is comparable to radiation-that she fortunately did not have to have-). I know before we went to bmt I read as many bmt survivor stories could even the ones that did not do well during and still survived, because it made me have hope. Even if they did get so sick, etc., they still made it; well, that just made me really know even if things get rough it can still turn out o.k..

We are due in the morning to have an ultrasound if weather permits. I am hoping so and I am very anxious. I know even if everything looks normal now does NOT mean that this baby will not have hlh, but it will be nice to know up to this point things are good.

Kristan is doing great and is due in the next few days to go for her blood counts. I am praying for all normal counts! We are going to stop by the pft lab so they can look at her and see if she is small enough to fit in their 'box' to do the test. This is just one more thing that has me sooooo stressed. Long story short; her last test 6 mo. ago was 'marginal'-80nd up is normal and she scored 79We are not worried at this point that hse has developed any restricitons with her lungs such as a fibrosis, but they have to watch that her score does not go down (then we would worry). The stressful part she is sedated (thought we were done with that part) and it is not as accurate when she is not breathing on her own, they are doing it for her. The other thing is if there was something wrong there is nothing they can do about it so it's not like, "Let's catch it early so we can treat it." sort of thing. Plus if it is still the same or has went down I will worry untill about 3 or 4 years when she can do the test on her own and have a more accurate reading since the next time she will definately be too big for the 'box' so she will breathe on her own. UUGGHH!!! I just really don't see any use in it since there is nothing they can do, but I know maybe it can give me a peace if everything comes out better this time, who knows!

Please keep us in your prayers. Also Alexandra, a child who had hlh and a bmt on the 20th of last month could use your prayers as well along with Koryn who just relapsed in the cns and plans on going to bmt this mo. if they can get it in remission. WHAT AN UGLY DISEASE!!!!!!

Friday, January 16, 2004 8:25 AM CST

What a beautiful day with the sun shining! I hope you all are doing fantastic! A good friend of mine's brother-in-law says anytime someone askes how he is doing he tells them 'fantastic'; this he says is because anyday you wake up is fantastic. He also says that there is only two things we have any control over in life; our word and our attiutude, and that he refuses to let any outside source change his attitude. I think that is a great way of thinking!
There is a lot of things that can change this attitude and if you have never been given such hard times to get through as in an ill child you may not realize how much easier said than done this may sound. I remember being one who said, "Whatever will happen, will happen." Now giving the fact that I have prayed each and everyday since June 14th, '02 (diagnosis day) every quiet minute I have, and constantly think of how close we came to losing Kristan several times, at what miracles God has given us with her, at how my other children could have had or could still be affected by this same horrible disease someday, that future children could be affected (like the one that I am carrying now), all the long term complications that can still arise and the riskes of secondary malignancies that can follow one day because of the route we had to take in treating her; it kinda makes you change your attitude slightly. It is NOT whatever will happen will, it is more like a constant begging of God, a never give up, a praise and thankfulness that is too overwheliming to describe each day you see your children, it's more like you are asking for the health of your children to BE His will.

Kristan is doing just wonderful, fantastic actually! She is so smart and I try not to brag on her for the things she does, because that drives me crazy; all children are smart. I just am so proud of her for the things she has accomplished. When she says her abc's or she talks in sentences it just makes me smile so big knowing this disease and bmt did not affect her brain and learning, this far anyway. I know some of the chemo could delay certain learning or they may be slower at some things, but you know what? SO WHAT! That is the very least of my worry, to have a straight A student! There is so much more that is important in life than this.

We go in for the ultrasound soon and are hoping all is normal and nothing measures larger than normal. I have a lot of hope and mostly faith that all will be fine; actually FANTASTIC!

Monday, January 5, 2004 7:00 PM CST

I am hoping I can get this journal added before it crashes on me again. Our computer will be fixed soon and I will be able to update more and be able to e-mail more of you like I usually do; sorry.

We had a great Christmas and hope you all did too. We were unable to visit with as many family members and friends as we hoped for, but this flu season has been a rough one; one that I will be glad to see go. We can not wait until spring!I sorta feel like we are back in that bubble we were in last year, but why risk it when you can take extra precations and keep your children well? Wal-Mart has been off limits for the kids these last few weeks; especially when I heard that you can contract it if someone coughs or sneezes within 3 feet of you, uugghh! We had even taken Morgan out of school because kids were getting the flu and being sent home and unfortunately SOME thought it was o.k. to send them back after being diagnosed with it a couple days later; "thanks we parents who don't want sick children REALLY appreciate it!"

Anyway, we all have stayed well so far; thank you God! One of my best friend's little girl ended up at Children's with the flu and pneumonia and she is a totally healthy child, we can only imagine one who does not have as good of immune system. She is doing great now; she's a little tough girl, for sure!

We are due in St. Louis next month for tow different occassions; one being a pft (pulmonary funtion test) and the following week for normal blood counts and check up. Please say extra prayers for all good results.

I better close for now; I think I'm pressing my luck since it has not crashed yet. Thank you so much for all the wonderful Holiday wishes, please forgive me for not responding. As soon as my computer gets fixed I will be able to more.

God bless!

Tuesday, December 23, 2003 2:48 PM CST

Merry Christmas!

I will try again to update; I have several times and my computer keeps crashing. I need my 'computer geek' brother to visit! If you are listening?! I know Aunt Meena will tell him. Anyway everything is going well around here. We are all trying to stay well so we can get together this Christmas. Unfortunately some of Dennis's family have had the flu so we will wait to get with them; I'm glad they understand, why chance it?

Kristan is doing great and has even caught up on the things she was behind on at her 2 yr. developemental test like jumping and doing the stairs unassisted. I am very proud given the circumatances of her having this disease, the bmt, the steroids that deteriorate muscles, and her breaking her leg. For her to only be two months off of normal is so awesome, better than I could expect. We are very proud of how she has overcame so much and where she is at now. She does have an attitude; I think I would too if I had went through what she has. She tells me, "That's what I said." Crack me up! Miss attitude!

Well, Santa is coming to our house tonight (yes, I know it's a day early; but more convienant with our plans), plus they are too young to know what day is what. They are sooooo excited. Even Morgan, who this year found out the truth about the whole 'Santa' thing. I told her I am 33 and I still believe, there are many 'Santas' out there and there's alot more to Christmas than Santa. She knows the true meaning and Jesus's Birthday; it bothers her so much if someone someone says otherwise on t.v., etc. Logan was so funny; he asked me. "Mom, is Rudolf's nose real, I know it's not" He believes in flying reindeer with a sleigh of toys and Santa, but not that glowing nose by golly! HAHA! SOOOOO innocent, I love it.

I hope you all have the most enjoyable Holiday Season full of love! Have a very Blessed one; from our family to yours!

Saturday, December 6, 2003 9:11 AM CST

Hello,
Everything is going fine here; just trying to not catch any terrible flu bugs. It is very scarey to think normal healthy children are getting so sick and even dying from the flu and then to think of all the immuno-compromised children and thier families; it has to be very frightening to even leave the house. I know Kristan is not immuno-compromised but her immune system will not be totaly normal for another year, so we are trying to be catious without crawling back into the bubble where we lived last year. It's hard not to when we think of how none of us got sick at all, but it is not possible when you have one in school and someone who works in the household. In all reality we are just doing our normal hand santizer (it goes everywhere we go) and staying clear of crowds (not sure when we will Christmas shop).

This is the last day of my first trimester and I am hoping all the yuck stuff will be replaced with all that energy you are suppose to have. I'm not sure if Kristan has grasped the idea that she will not be the baby in 6 months but I am sure she will love the baby as we all will. Dennis and I have decided that we think this child will be just fine; I think we are hoping so much that we have convinced ourselves. I've been a little more nervous lately on the subject because of the news I heard this past week. Two children who had hlh are now in Heaven with God. They both had a sibling who was also lost to this aweful disease and they were both diagnosed at a very early age. I can not even begin to imagine the parents pain and what they are going through to have lost two within two years. Please pray for Christian and Paul's parents and family. Please pray for all the others who are about to go to bmt or who are healing from one. When we think of these families we think why would it not be us to have to endure the same, why should we be spared while these parents were not? At the same time we have to stay possitive and just try to not go there for sanity reasons; if you know what I mean?!

Kristan is getting so big and soooo smart. She is now sharing a room with sissy and sleeps all night, she is completely potty trained, she talks non stop and you can understand almost all of it. She is just so darn sweet! I will update pics soon. I keep forgetting to get them developed;uugghh!

One more thing my baby brother and wife had their first child. Alexis Michelle was born Nov. 30th at the wee hours of the morning. She is sooooo sweet and adorable! Congratulations!

Monday, November 24, 2003 8:42 PM CST

Hello all you wonderful people; my supporters. We went to St. Louis today after three months of no labs being drawn for a check up. We were pretty nervous because as you may have remembered last time her liver enzymes were 3 times their normal and a few other counts were not normal. Plus the petechiae we found the other day...

O.k. am I building you up? WEll.... the first time in her entire life (since three months anyway) her counts were...
NORMAL, THAT'S RIGHT BABY, NORMAL!!!! GREAT, EXCELLANT, ABOVE ALL TERRIFIC!!!!! We got a good BILL of health from her Dr. Bill. She did not even cry with the lab draw, she is simply amazing. And get this she went the whole 2 hr.trip, to and from, with a dry pull-up, she is definately potty trained. She is definately a big girl! The nurse who took her vitals told her she was a sweetie, she added pie, to let her know she is a sweetie pie, not just a sweetie; she cracks me up with the things she says.

Back to the counts: wbc-5.6, hemoglobin-12.3, platelets 220(guessing the petechiae meant nothing) and everything else is pretty boring, they were however all normal. The ferritn is not back but we are not concerned with it after all these great numbers.

I better close for now to add this post since my computer has crashed 3 times tonight as I am trying to add an entry; I'll write more soon.
THANK YOU SO MUCH FOR YOUR PRAYERS!!!!

ABOVE ALL THANK YOU GOD!!!!!!!!!!!!!HAVE A VERY BLESSED AND THANKFUL THANKSGIVING!!!!!!!!!!! RECOGNIZE ALL YOU HAVE TO BE THANKFUL FOR!!!!!! It's amazing what we can come up with!

Keep our hlh families in your prayers; I speak to a new family every week or so. So many newly diagnosed cases. We hope to offer hope and be an inspiration; what a great gift to give!

Tuesday, November 18, 2003 4:58 PM CST

Notice update after this one!
Hello,
Yes it has been a while since I have wrote; I think the nausea has kept me a little preoccupied. This along with the stress in my life right now.

Kristan had been doing excellant and she is still feeling good but has her mommy and daddy stressing once again. I found a group of petechiae on her neck last week and thought it had to be from a pinch or something. Every couple days she has a few new ones then the others would fade. I kept thinking maybe it was from her coat on in the carseat being snug and rubbing since they are no where else on her body. I was sooooo upset last night with worry I could hardly sleep. Then today she had a couple new bruises on her leg, this along with the nose bleed she had last week has really stressed us this week. I was going to bring her in today and developed a miagraine myself, I'm sure from the stress so I just decided to see how they look in the morning. The ones on her neck actualy looked a whole lot better this afternoon like they were trying to go away.

We just really need your prayers these days. Between this and the uncertainty with this pregnancy as to rather this child will be affected by hlh is enough to make anyone go crazy! Somedays I do great and others I feel like I have several break downs and have myself a nice pity party; Dennis and I being the ones invited. We are just ready for some pure happiness and the last three years of our lives have been so hard! We just want healthy children and that's all. Please pray for us to get through this! Please pray that Kristan's counts are all in the normal range when we go in rather it be tomorrow or if it is when we go in to St. Loius Monday.

One good note; Kristan has slept throught he night for three nights in a row. First time in her entire life. She knows mommy needs rest.

UPDATE:NOVEMBER 19TH
I wanted to update again and let you all know we are doing much better today! Her petechiae are about gone and have faded alot. The only thing we have done different is it hasn't been cold enough for a coat so I have bundled her in a blanket in the mornings to take Morgan to school. I have loosened the carseat but I wanted to make sure this was not what was causing this. Either this or all these prayers have really worked quickly.

I think it is the prayers, personally! Please keep them coming, we go for a check up in a few days. We need all good, normal blood counts so we can celebrate Thanksgiving and REALLY, REALLY give thanks!
God bless you all!

Please keep Jeremy, Koryn, Christian, Alexandra, Alyssa and all the newly diagnosed hlh children and the ones going to and having a bmt in your prayers; please!

Tuesday, November 4, 2003 8:59 AM CST

I am not sure where to begin; it has been the most emotional last several days that we have had in a long time. First my dad was in an automobile accident totaling out his van, but luckily walked away with nothing broken; very scarey. Then a couple days later I found out that I am pregnant. The news is VERY shocking for us since I did not really have much of a chance to conceive due to past surgeries. We are shocked, confused, nervous, scared to death, and at the same overwhelmed that this is obviously God's plan and He has chosen this.

It is scarey because of the geneic disease Kristan had gives us a 25 chance of it happening this time. How could we go through that again, let alone put our family through it all again? We are praying really really hard that this child is unaffected by hlh. I think we are just numb and do not know what to think. We have always TRIED to get this way in the past; trying 7 years with our first child, now this. It goes to show you who is in charge. Our due date is in June which is some what ironic. Kristan was diagnosed in June and had her bmt in September, I found out in September and due in June plus this is the same true for Logan who was born in June. Anyway these months are kinda special around here. It's funny becasue they are mine and Dennis's b-day months as well; very busy months.

We went to see Barney this weekend as well; the kids loved it so much and it was great seeing their faces light up like that. We stayed at our 'old apartment(as Logan calls it)Hotel' and that in itself really brought back some memories. To walk in and see where you had just brought home your baby to begin recovery last year and who would of thought we would be taking her see Barney the very next year, let alone have another child on the way. Oh, how we don't know what is in store for any of us, only God knows. We do feel like He has chosen this for some reason, one I hope to be to give other hlh families hope of having more children. That would be a true gift.

As I said this has been one very emotional roller coaster ride this weekend. The reality is starting to settle in and now I must just be strong and know God has a plan and we are fortunate enough to be part of it. The only thing that scares me is the children knowing and hoping they will not have to deal with what we have, oh how I pray they will not have to go through that again! I feel really strong and possitive about it and plan on keeping my faith strong and I just feel at peace for some reason; I think it is the prayers. Please keep us all in them.!

Tuesday, October 28, 2003 11:25 AM CST

My sweet little girl is 2 years old! I can hardly believe how fast the time has went. At one moment you feel like you may have wished the time to pass quickly in order to get further past bmt hoping you weren't rushing her life; the next you think that you have embraced so many special times-everything from thanking God each day she would wake with no fever to just looking at her in awe at what a miracle she is each time she would do a simple task. Time seems to stand still when it was so hectic with appointments and awaiting results of this and that, but it goes rather quickly when you start to breathe a slight sigh of relief. So many 'one year ago today we were...' have been passing and yesterday was one when we found out for the first time she was disease-free and 100 percent engrafted. On the 30th is when we left the unit with her after a 45 day stay in one small confined space, you wonder how you did it...you just do.

Over this past year I have been in contact with several hlh families. When we had went through it we knew of no one and it was so scarey to have none to compare it to. Just this week I have heard from three new families. Please say extra prayers for Alyssa, Christian, and Koryn. They and their families really need our prayers. When you are first diagnosed you are in such shock then you get this extra special Grace from God to give you strength to continue. You wonder why me? Or why my child? Then you realize how special they are that God chose them out of a million other children. You see that this journey will deepen your faith, you know that God is in charge, and you see all the new people He brings into your life to help lift you up at this time. Sometimes you feel abandoned but then you see angel after angel He sends you to help. Maybe it was the doctor who made the diagnosis or the lady you met in the hall when you realized her problems were even greater than yours. No matter the circumstances we know He is here to carry us along;like the footprints in the sand story is what it makes me think of.

Thank you all for checking in. Kristan is doing just super! I could not be happier with how she is growing and is so smart.

Remember to keep all the hlh families in your prayers tonight, please! Jeremy is waiting for counts to come in, please pray for them to soon! God will continue to bless those who pray for others, thank you!

Wednesday, October 22, 2003 5:05 PM CDT

Hello,
It seems like it keeps getting longer in between updates, which is probably a good sign on our part. This it is.

The aweful stomache virus went through our house taking each of us to almost the point of dehydration, just when we thought we would be taking someone in for some i.v., they would make a turn around. It has lefted us very fatigued for a week. Thank God Kristan (knocking on wood here) has not gotten it. How could she escape it? She's even accidentally ate after Morgan-uugh! I think it is due to me praying that I could just have it twice as bad and her not get it, and that I did(God seems to have a great sense of humor). At the same time I know we are not out of the woods of it yet.

Sunday is my precious baby's (o.k.- big girl's) birthday; she will be 2 years old! She was diagnosed at 7 months old, and now she is 2; UNBELIEVABLE! I am so thankful to God each day that it is just overwhelming! I just want to hug, squeeze, and kiss her constantly. I just love her sooooo much and she is so full of love herself.

I was out getting b-day stuff today and saw a mother of two small children in line in front of me. She had a baby and a toddler. The little girl kept asking questions as the mom was trying to talk to the clerk. The mom was so rude to her child that I thought I would have to say something. I just wanted to say, "You know, these are precious GIFTS from God, not everyone is as fortunate to even be able to have a child much less two. They also look very healthy, do you know how many parents I know who would love to have healthy children free of disease? Do you know how many children are out there with disease, suffering, and many who are even terminal and have not a chance at life? How many parents who are suffering watching their child battle their illness, but THIS is a battle to you, to answer a simple question of your dear child's?!" There are many times we have to bite our tongues! This was one of them.

Wednesday, October 15, 2003 9:50 PM CDT

Hello,
We are back from our appointment at Children's and wanted to report her evaluation she got from the developemental test she had. She did excellant; better than I thought she would. On the mental part which consists of everything from language to problem solving to concentration and a lot of things in between she scored above average. This was compared to other 'healthy/normal' children, not ones who have been through a bmt. On the other end her physical part she did not do as well and fell in the 20 percent range, which means really nothing except this is normal for what she has been through; the bmt, the treatments, the broken leg, these are all contributated to causing delays. We can live with delays, we can strengthen muscles, and we can watch for any signs of her not developing within the norm. The doctor was not concerned at all, so I am not either; someday she will jump, walk upstairs unassisted, and other things. In the real scheme of things...who cares, this is the least of my worries, believe me.

Her brother was a very sick boy yesterday and we thought we would be taking him to e.r. due to not keeping anything down, then came the fever, The dreaded fever. But all is well now and he bounced back quickly, yeah Logan's nk cells and immune system which he has shared with his sister.

We will not have to go back for any labs or check ups for a couple more months. We are praying her liver enzymes have went back to normal and all is good. Thank you for your continual checking in on us and for your words. I'll keep you posted.

God bless you all!

Sunday, October 5, 2003 8:51 PM CDT

Hello all you wonderful people!

Do you hear excitement in my voice?!

That is because we have received the absolute best news from Kristan's doctor...KRISTAN IS GREATER THAN 99 PERCENT ENGRAFTED AND FINAL FROM PATHOLOGY READS... NO DISEASE!!!!!!!!NONE!!!!YEPEE!!!!YAHOO!!!!!! We could not have received any better news on her. What this means is: She is cured of her rare, genetic, life-threatning, rapidly fatal, immune deffective, terrible, aweful, ugly disease. Fortunately it does not hide away or stay in remission with chance of relapse like the aweful disease of cancer. I feel with all my heart for the families who face that each day and pray for strength and hope for them.

As far as her future, our other children's future, OUR future; we do not know what God has in store for ANY of us. So, I don't plan (even though I know it will be hard not to) sit and worry about one day Morgan possibly contracting some virus that could trigger the hlh process. If I did this I think I would be missing out on a lot and it would not be fair to them. Of course I think about it still each day, especially when she says things like, "Mom I can't wait to go to Heaven." What are you suppose to say besides, yes we all hope to one day. I know the first several hundred fevers will throw me into a panic as well, but you know, we all need a little jolt in the ol' heart to keep us going sometimes.

Actually I think it will only keep us closer to God praying and thanking Him constantly and continually! What if we would have found out somehow that neither Morgan or Logan would ever have a chance of developing the same disease and did not have the same deffective gene Kristan had? Then what? Well, besides us being the happiest people on this earth, maybe the excitement would wear off after (maybe 50 years) a while and maybe we would get into normal routine and busy with everyday life and maybe we would NOT pray as often and be as thankful for every day, every breathe, every birthday, every recovery from a minor cold, every hug and kiss we get, every smile, every fever-free day, every fuss about cleaning their room...o.k. you get the picture. My point is I know the worry brings me closer to Him and maybe this is His plan, the other would be too easy and life in general is not always easy. This is the cross He gave me, so I must carry it and go on.

One more thing;
There is something I realized today after finding that Kristan has almost cut her second set of molars. She WAS behind on her teeth and thanks to CsA (immuno-suppressant) had overly thick gums and did not cut her first one untill she was one. Then she has cut 20 teeth in one year. I just read that they usually get their second set of molars by the age of 3; she is not even 2 for three more weeks. All I can say is that she is a tough cookie and no wonder she wakes up so much at night. Let me guess...This is RARE?!

Friday, October 3, 2003 1:32 PM CDT

Thank you, everyone who signed our guestbook or sent e-mails to say Happy Anniversary; it really means alot to us that you care enough to take the time to do this. We had a great celebration even though it was not spent how we originally entended, reguardless, us having her here with us and healthy; there was not more we could have asked for.

We went for our first "well baby" check up in over a year and a half and all was good. She was in the 75 percentile for her weight and the 40th for her height and growing and developing normal. We love normal! She is scheduled to get a pneumonia and flu shot as soon as she was over this virus she had. Well, since there is no cold symptoms and no fever or acting sick; I am thinking she is over it. I kept expecting this horrible reaction to her first virus and ending up with pneumonia and in E.R. or something. She actually handled it so much better than any of us and I would have never known she was sick if it was not for her labs indicating such, that and the runny nose she had for 3 days. I keep thinking the worse of it was not here yet but she seems perfectly healthy so we will go Monday to get the shots. The whole family is suppose to get the flu shot and they have to divide the shot in half for the children so that means getting them shots twice and they will know what is coming up after the first one; dreading that!

After that she will be ready to start immunizations; YUCK! We may spend the night in the Children's parking garage a few days(haha, just kidding). I'm sure she will be fine but it will be very scarey. She also has a "developemental test" -post bmt- coming up in a week or so. Then she will have labs drawn in a couple weeks to see if her liver enzymes have went back to normal after this virus. We have not heard any official results on her b.m.a., but will post when we get them.

All in all we are slowly trying to get back into a somewhat normal life style. We still avoid sick people and have not really had people over to our house besides immediate family. I think I will feel alot better once we see that the blood tests are in the normal. And she has went through a round of shots.

Have a great fall day, the weather is gorgeous!

Friday, September 26, 2003 5:07 PM CDT
HAPPY ANNIVERSARY**ONE YEAR POST BMT** KRISTAN GRACE!

My precious baby; You are my sunshine, my strength, and my inspiration. You have taught me more in this past year than I could have learned in a life time. The great thing is you also taught so many other's as well. Having faith in God, hanging on to hope, and caring so deeply for those who are suffering; are just a few of the many things we have all gotten from this experience. The one true thing is that we were all able to witness a miracle.

I am so excited I can hardly type fast enough. The good, the bad, and the ugly has definately made a complete turn around. First of all I received the news yesterday that her ferritin level (big indicator of the disease-went from elevated to 2,000 during transplant-was 193 a few months ago) was 84, a great sign. Also the cns (spinal fluid) that I almost spazzed out over even the thought of it is...CLEAR!!!!!! I was starting to take a wee little sigh, but not a deep breathe yet.

This day started out wonderful which included us going to church (they have a children's Mass in the mornings). We all (including Morgan wearing her's to school) wore our tye-dyed t-shirts I made the family. The front of my shirt says MOM OF A... then on the back it says BMT SURVIVOR, Logan's of course reads DONOR AND BROTHER OF A...
The rest are the same except for Kristan's saying on the front BMT SURVIVOR on the back THAT'S ME... 9/26/02
A few really neat things happened while we were there, of course I read everything into anything and think of certain things as signs. The first thing she draws when I handed her a pen and paper was a CROSS (she's never drawn one before). I just look at her and smile, then after we have to go to the cry room (it's very quiet in a big church when she was the only toddler there) and while we were in there she was looking at bible story books and hands me a book out of all the one's there. The title was THE MIRACLES OF JESUS
Needless to say... didn't make it out of there with out some emotions.

I saved the best news for last, yes there really is more good news. Our wonderful doctor (whom by the way did not have to go out of his way to do this, he could have just made us wait a couple more weeks) called and said from what they could see she looked like all male cells and should be 100 percent engrafted. He added we can't take this as a for sure until they get the report but it is definately something to get REALLY REALLY EXCITED OVER!!!!!!

THAK YOU GOD!!!! THAT IS ALL I CAN SAY!!!! I can also say thank you, all of you. You have been my support, you are like angels sent to me to help me with my sanity, and to give me courage, someone to confide in, to talk to, to vent to. You are all so awesome. I read all the guestbook entries before I wrote and I was so teary eyed to see how much you all care, you all will be blessed over and over. Each of you hold a very special place in my heart and have also taught me so much as well.

By the way, so far she is holding her own on this virus. I was really scared with this being her first illness and the fact it is most likely cmv or ebv. She has never fought off cmv with out the help of gancyclovir, so this is the true test of seeing if she is cured of her disease and immune defect.

This is a very emotional day, I could not be happier!!!! GOD BLESS YOU ALL!!!!

Tuesday, September 23, 2003 9:03 AM CDT
We went for Kristan's one year out b.m.a. and spinal tap along with blood tests yesterday. Over all I would say we received the GOOD, the BAD, and the UGLY.
First off the good; her cbc which consisted of wbc, hemoglobin, and platelets were all in the normal. YEAH! Her liver and spleen was not swollen and she had a pretty good "bill of health".

Now the bad; her liver enzymes were elevated along with her monocytes and she had some a typical lymphocytes. We are believing that it could be "just a virus" that she is trying to fight since she did a have a runny nose a day before and everyone is sick in the family. Her bone marrow looked good with nothing too unusual, but pathology still has to look. It could be a virus, a vitamin d deficiency, or beginning of gvhd, or worse case- the disease, or I suppose there are other things like liver disease-none of these are pleasant.

Now the ugly; we have to sit and wait for #1. her engraftment results-takes two weeks, #2. the looking at her spinal fluid since we found out that her disease has the SLIGHT POSSIBILITY OF COMING BACK IN JUST THE CNS, THOUGH ON A GOOD NOTE IT USUALY DOES NOT IF NO PRIOR CNS WAS REPORTED, #3. the nk study will tell alot, and finally in a month we will redo blood tests to check liver functions and hope and pray they return to normal. And we found out there will be no way of ever finding out if either of our other children have a chance of being affected. Logan has pretty good odds of not since he had good nks, Morgan has never been tested. We were told we could have her tested but what would we do if she had no nks, besides find a bridge to jump off. I know we could go to the registry and try to find a donor to line up but the thought of the stress is too overwhelming and as Dennis put it, it is like holding a revolver to our head hoping it doesn't have the bullet in it. I could not face the fact that she would be a walking time bomb hoping she never comes in contact with the viruses that could trigger it. No thank you!

I am completely nauseated and on edge. I will not be able to function until I know these results. I felt o.k. leaving yesterday and our dr. did look at the slides and said it looked like a viral infection he was pretty sure, but it will eat me alive until I know. Here's the other kicker it looks like it could be cmv or ebv, so this week or two will tell all... if I live through it.

It will tell if she has a good working immune system and can fight off cmv or ebv since normal healthy ones can do this so this is the true test for her. Also I was thinking if this is what she has it is good chances since the other two are sick they could have the same thing and we all know it would be great if we knew my other two could fight off these two viruses since they are usualy the trigger to hlh. So I am hoping this is God's way of saying,"Get past this week or two and you can get past a lot in life!" I wish I could blink and it be next month! I am very anxious and a little worried, on the other hand I am thankful we have her with us today along with my other children and we should be thankful for each day. Please say many many prayers; this is a "tell all week"!!!!!!!!!!!

I was hoping for all good news so we could celebrate Friday being her one year out day, but now I'm not much in the party mode.

Friday, September 19, 2003 8:32 PM CDT
It saddens me to make this journal entry; our very dear friend, Amariah, who had the same disease Kristan was diagnosed with has lost her battle and is now one of God's dear Angels.

This has been a very sad week with lots of depressing news along with the nervousness I have knowing in a couple days we will be headed to the hospital where it all took place a year ago. She will have a b.m. aspirate along with blood draws. I get a sick feeling everytime I think of it; which I think has a lot to do with all the terrible news we have received in the last couple days.
A dear friend I had met when her child went through bmt at the same time as Kristan; they just found out he has a tumor in the back of his lung and it is his leukemia returning. I feel for this family and know they have been through so much; we still have hope! They will begin chemo once again to try to shrink it, please pray for them. One of my best friend's mom found out she has cancer, then Amariah not making it has really done me in this week.

I will be so relieved to get these one year out test behind us and move forward. When we get anxious like this we usualy just need that clinic visit and her doctor always helps by answering our questions and he always makes us feel better. I still have this "fantasy" that we go in and he tells us that he has been looking at her slides and reviewing things and it turns out that she really had the secondary type of hlh, not the familial form. I can only dream! This would be such a worry lifted beacuse then we would not have the constant, in the back of our heads, of our other children not ever being affected by the same disease. A good friend of mine asked if we would try to have more children if we knew it were not the genetic form. I told her I didn't know but at this moment I think not, because of all the stress it would not be good on anyone, plus Kristan would not have it, since I am HER mom- poor brother and sister.

She is so very precious and they will be so surprised when they see how good she looks when we go in, the last time she was either crying or sleeping so her dr. has never even seen her walk, let alone talk, and the fact she is almost potty trained...wow! SHE'S A BIG GIRL, that's for sure!

PLEASE PRAY FOR GOOD NEWS ON MONDAY; FOR NORMAL BLOOD COUNTS, FOR AWESOME LOOKING CELLS, FOR NO DISEASE, FOR NO GVHD, FOR 100 PERCENT ENGRAFTMENT, FOR HER MAKING IT THROUGH SEDATION AND NOT SCREAMING FOR FOOD ALL THE WAY THERE!!!!!!!!!! ...FOR MY SANITY,through all this!!!!!!!!!!

Tuesday, September 16, 2003 8:33 AM CDT
Thank you all for your prayers for Amariah, there still has been no change as of yet. I can not immagine what the parents are going through.

I thought I would give you an update on Kristan since we have not in a while. Usually that means there has been nothing bad to report which is exactly right. She has been doing just great! I still see improvements each day even though we are this far out. A couple weeks ago when everyone was sick in the house and she found her sissy's motrin dipenser and drank out of it (with Morgan having fever at the time) and finding brother's gum he left some place where it doesn't belong; puts it in her mouth and chews it while he was sick with the stomach bug, I just knew she would get both these illnesses on top of one another and guess what? She never got sick! I can not believe it. Logan always prays, "God please help Kristan not get sick, ever." And I tell him that she will probably get sick sometime but if she does we'll pray to help her get over it quickly. He argues with me and prays the way he had been. Well, it must be working (knock on wood) she has been sick only once since transplant a year ago and it was really nothing just a runny nose that they went ahead and treated with antibiotics in case of a sinus infection since there was a little blood mixed in it.

Over all she has done great. Last week, however , she did have me a little more worried than usual. She was up a lot at night, irritable even in the day, wasn't eating quite as well, tired alot and looked puffy to me. She looked like she was swollen for some reason, unless it was my immagination. (Lack of sleep can play tricks on you.) She looks so much better now and acts better, so I'm not sure what that was. I even called her regular pediatriton and felt quick silly when they asked if there was any other symptoms besides irritability and not sleeping good. But you never know!

Today one year ago we entered the doors at Children's hospital frightened beyond immagine, with a sick lump in our tummys, but so full of hope and prayer. When we walked in we were unsure if we would all leave as a family again, what a scarey thought. This is the day they got us settled in and was getting ready to start the first of a nine day straight regimen of intense chemo to destroy her entire immune and blood making system in hopes of giving her another new one; her precious brother's. And it has been a good one, thank you Logan. Count down...10 days...'til one year post bmt ANNIVERSARY!!!!!

Today is also the day Jeremy, the little baby boy who had hlh like Kristan, is suppose to enter those doors and begin the same exact thing we endured last year. They are filled with that same hope and I know worry. Please say a prayer for them today also. This is their second transplant.

We are due for her one year out tests very soon and will keep you posted; prayers is what we need. I am a nervous wreck lately worrying about them. I must keep my faith as I have and know God WILL see us through! I praise and thank Him everyday for this time I have been given with my precious children. I feel like embracing each day and wanting it to last since it feels safe at the time and all being well.

Thursday, September 11, 2003 9:24 AM CDT
I AM ASKING FOR Y0UR PRAYERS!
Little Amariah, who lives in Australia, and has under went a bmt for the same disease as Kristan-HLH, is not doing very well. She has been in ICU for some time now and has been on a ventilater in which they have now had to increase in pressures. Her lungs are very full of fluid and they were given a 10 percent chance of making it through. We know God does not care about statistics and all things are possible with Him. So I come to you today with a very saddened heart, yet with hope and ask you to ask everyone you know to pray really hard for this family. They have been through so much! We believe in miracles and prayers answered!

THANK YOU!

Sunday, August 31, 2003 5:31 PM CDT
We have quite the SUPER HERO page going on here; Logan helped decide on the pictures, etc. for the site this week (can you tell?). This is his personal drawing of spiderman also. I thought it appropriate given the fact we are coming up on our one year Anniversary and it is because of HIS marrow and God's grace that we have our dear Kristan with us today; he is our SUPER HERO!

If Kristan escapes the illnesses in the house this week I will swear she is SUPER baby, herself and so far so good. Dennis and I both had a terrible stomache bug that sent me to the hospital only to find my blood counts were a little screwy and have had me totally freaking out this week. But I think it just may be my imagination going wild and is most likely due to the infection itself I must have had, let's hope! Then Morgan after only one week of school comes down with fever and sore throat. We have been going beyond on the hand washing, like they wash their hands then germ-x too, you can never be too careful! Logan had the stomache thing for one day and is great now; we're like "Yeah, good immune system, thank goodness since your little sister has your marrow." Everyone is feeling great now!

People are wondering what this one year out means. Are we now free of worry, can we join the real world and all it's germs? First we have our appt. coming up to check her blood counts along with engraftment and hopefully see no disease, second if all is good we will go on to do reimmunizations and pray for no bad side effects, third we will hope her immune system has started to kick in since they give us a time frame of anywhere from six months to 2 years. This is quite a wide spread of time but no one knows and has no way of finding out how good of a system she has of now. We will continue to avoid crowds where germs are most easily spread, we will avoid sick people as most normal healthy people do (so I'm not sure if this is that big of a thing) and it will just take us time to adjust to fitting back into society, I suppose.

So really the worrys if we should mention them are; getting past the tests coming up, immunizations, gvhd-it can accur anytime, we will deal with that if and when it accurs, and lastly will be of course the lasting worry of her developing a secondary malignancy from the wonderful chemo she had along with relapse of the original disease.
So yeah, we have a lot behind us and we are moving forward in a very catious determined way with God by our side to give us strength! Please keep us in your prayers!

Tuesday, August 26, 2003 4:43 PM CDT
**HAPPY 11 MONTH POST BMT ANNIVERSARY, SWEET BABY!**
Let the count down begin, one month from today and we will be at one of the huge milestones we so eagerly have been waiting for...One Year Post BMT Anniversary. We are not sure as of yet how we will celebrate; I have never given a Rebirthday party, you know?

Kristan has learned a lot in the eleven months since bmt. She has gotten so strong and learned to walk whenever she was so weak that she was barely able to hold her 22 pound (steroids) self up for minutes at a time. She went from saying a couple words to repeating everthing. Just a little busy body is what she is; spending hours playing baby dolls with sissy, building legos with brother("bru thoe" as she calls him), coloring, and is able to keep herself entertained. A big Barney fan now too. It is truly amazing how fast they grow and all they learn in such a short time. Never have I ever noticed every little thing they do either and be so grateful that she is doing it. According to the "What to Expect the Toddler Years" she is right on schedule, yeah!

Last night was a very exhausting and terrible reminder of the whole ordeal with Kristan. I had to go to the E.R. with a possible gall bladder attack (I'm fine now) but to enter the hospital where you first learn of your child having something very wrong, then wait in the waiting room with one baby had been having seizures(a typical symptom of hlh), then watching them draw blood from yourself thinking of how frightening it was for your child and self. Then thinking o.k. what if they come in and tell me MY counts are wacky and they suspect something major, of course that thought crosses your mind. At that point I remember thinking when we heard of Kristan's dx, that I had rather it had been me, not her suffering or going through all of it, I would have switched places with her in a minute. I think now after giving it a lot of thought it would have to be harder to be the parent with a life threatning disease telling her children or just living day to day not telling them than to even see them go through it even though that is torture in itself. I don't know, I would choose to do neither if it was up to me. Anytime any of us think we have it bad there is always someone worse and we have to carry our own crosses; no one else will do it for us. It was really sad to see the look on Morgan and Logan's faces when they heard I was sick. They must have thought sick like Kristan was, it was aweful. I'm sure they are traumatized.

UPDATES ON CHILDREN I HAVE MENTIONED: JEREMY'S's cord blood that was flown in thawed out and is of no use. They are now in search for a donor. One other close match may have been found and they plan to do second transplant around the first week of Sept.
AMARIAH from Australia had a rough time and spent many days in icu with cmv pneumonitis but is now doing better and is 100ngrafted.

Saturday, August 9, 2003 5:51 PM CDT
Morgan, my 7 year old, comes to me earlier and askes how to spell "bo and arrow transplant". I tried not to burst into laughter and asked her if she meant bmt; she did. She was drawing this picture for me, it is the one I used for the border. Logan drew one next so I'll put his up a lttle later, it's not finished yet. He's my perfectionist and has to have it just right. **((This is Kristan in the hospital receiving her bmt with mom holding the marrow. For those who did not recognize the man standing beside me or could not read the small print on His shirt; it is Jesus.))** I asked why the short, blonde, curly hair on Him and she said, "No one knows what Jesus looks like, only the people who died, right mom?" I told her she was right, how could you argue with that?

It made me think of all the ones I have known this year who is now able to SEE Him; Baby Anna, Beautiful Alexandria, Brave Jacob, and unfortunately this weekend a little boy in our home town has lost his battle to neuroblastoma. He has won the hearts of so many as we have all prayed and saw his precious face many times on the news and St. Jude's stories. His dad made a comment on his last interveiw how they took him home and let him do all he could to enjoy his time left. He played t-ball and his dad said there were times he had to carry him to bases. Can you even immagine? What if we all lived like we thought we were in our last days? I know no one wants to think of that, but would it be a nicer world? I don't think I would choose a trip around the world or an ulimated shopping spree to spend all I could, or even to do some great "thing" that I had never done before. No, I think I would first go to church, then go home and just hug and kiss and love my family.

If you were to immagine it being your last days then someone told you it may not be, you may have more time left, that no one knows when that day will be...Then what would you do? I guess be so very thankful for your time left and appreciate every little thing and want to go out and spread God's Love and tell of His miracles. You would be so excited, shocked, somewhat in disbelief of it all, so fortunate, soooo happy!!!....***(((This pretty much is how I feel.)))***

Friday, August 1, 2003 3:46 PM CDT

I could not wait until July was over so I can now officially say, "NEXT MONTH will mark her one year Anniversary of bmt!" One year out is a big deal for this disease and success in a bmt. It is a huge milestone that we all long to get to. Then the three year out is even better, then of course the five year out mark is the best. These I am not rushing because this would be rushing her life and all the awesome childhood memories away; and me being closer and closer to 40...oooo, YUCK!

This unfortunately does not mean all our worries and concerns will come to an end (I WISH IT WAS THAT SIMPLE!). There are actually a lot of trying times headed our way. First of all Kristan will be ready to start her immunizations all over at the one year out point. There was once a time when I dreaded them so much because of how the babies would cry and think you were responsible for this sneak attack. Now this is the least of my worries, no my concern now lies in the fact that there are many families swearing that the shots caused or triggered their child's hlh. This being one hurdle to get past and the next is Morgan starting school. I would love to have the normal, "I will miss you when you go." No, it is now more like; I hope you do not come down with cmv, ebv, or chicken pox that could possibly trigger hlh in her. I do not and refuse to worry day in and day out about this, I do however, have this in the back of my mind every minute of everyday. One of the next concerns is Logan receiving HIS last shots sometime in the future. This is when one little boy's hlh was set off. He was perfectly healthy one day, the next after receiving his chicken pox vaccine was later diagnosed with hlh...VERY SCAREY THOUGHT!

I do not want you to think I sit and worry until I make myself sick (I only do this twice a week;lol!) because most days are great and I put it out of my mind. I think every other day I hand it over to God then somehow it comes back and starts eating away at me again. Maybe I have not fully done so.

Kristan is doing good. She still gets rashy and irritable some days and they seem to go hand in hand, so I'm not exactly sure what is going on there. Hopefully excema and allergies not gvhd. Other than that she is fantastic. She makes it so easy to get out of bed in the morning with her sweet face and voice saying, "Mommy, mommy, hi! Up mommy!" Full of smiles and laughter; she is a pure joy to be around. When she hears you mention God or say the word Blessing she says, "Amen". I'll agree to that!

I feel so blessed to have met so many wonderful people along this journey and am very thankful to all of you for your prayers. God does hear those prayers!

Please keep Amariah in your prayers. She is in Australia receiving her bmt and really needs our prayers. She was diagnosed with hlh and it has been about two weeks since her bmt. Her mom and I have corresponded for months and we know what they are going through. We wish you the best baby girl!

Saturday, July 26, 2003 9:06 AM CDT
WE ARE 10 MONTHS POST BMT TODAY, YEA!!!!! AND DAY 315 FOR THOSE OF YOU COUNTING DAYS (haha!). Just two more months and we will be at that one year out; WHAT A CELEBRATION! I can not wait. I would love to have a huge party and invite everyone we know, and we might do this, but I am still a little on reserve as to how many people she is around. Once she is immunized and we are getting into that second year I'm sure I will slowly, very slowly ease up and try to get to a near normal. I'm just not sure what "normal" is anymore. I think my paranoia/germophobia is traumatizing my children, well atleast Morgan anyway. At bible school when I asked her why she was not eating she whispers in my ear, "Mom we shook all the kids hands and I have not washed my hands." She would not eat until I took her to the bathroom and washed them. At regular school they do this before lunch but with this vacation bible school I guess they didn't think of this. Logan on the other hand drops his sandwich on the floor and wipes it and starts eating it before I could say anything. Uuugh!

Kristan is doing so good! You would never know she was ever sick. She is talking so much and will repeat any word you say. So I'm not too worried about the bmt affecting her speach as of now. She is just the sweetest little thing! At church last night we watched the children do skits that they learned at class and Kristan was so funny. I dropped the camera and her maw maw picks it up and she yells "CHEESE!" She is so comical.

Her peeling fingers come and go, along with her excema and skin rashes so I have learned not to panic each time she breaks out (I'm proud of myself since this is not like me to not panic). And other than that she is great. Eating, playing, running, just being a typical toddler is all that is new with us; can't say much about the sleeping pattern-someday I'm hoping to sleep through the night, someday.

Thank you all for the continual prayers and checking on us, you all are great. Thank you for signing our guestbook, it means alot. Please keep all the children suffering from diseases and their families in your prayers; my heart goes out to them. We thank God each and everyday for our children, please do the same; they are such a gift from God!

Saturday, July 19, 2003 9:09 PM CDT
The song that says, "I believe I can fly" came to mind when I added this bird to her page. This was like our "theme song" in the unit as it played in our heads over and over; it must have just came out at the time we were in for transplant.

This photo, above, was taken on our vacation to the beach a couple months ago. Each time I get pictures developed I can see the difference continually of how much better and healthier she looks in each one; totally amazing. You would think she would reach a point and stay that way but she doesn't, just constantly improving and growing like crazy. We switched from babybed to toddler bed today, so we'll see how that goes. In all reality she has not even graduated from mommy and daddy's bed to babybed, but I thought we could try this. She is still in the same room though, which I prefer to keep her near.

The last entry I mentioned Logan having petichiae (those tiny bloody specks usually due to low platelets). The ones I saw faded but I notice new ones every once in a while around the same area. I am thinking it may be from him having on a tight life jacket and doing cannon balls in our pool. I am hoping this it and Dennis seems to think so. It is just so darn scary to see them on another child of yours, it is nauseating.

I did a lot of spring cleaning (o.k. I know it is summer, I'm a little behind) this weekend and I have shed more tears over such little things I think I am having some kind of post tramic stress syndrom or something. I came across Morgan and Logan's babybooks and to see all the things that I recorded and was so excited over-first tooth, first steps, etc. Then I think of how I could not even bring myself to write anything in Kristan's since she became ill at 7 months and I was not sure how things were going to work out. Writing things like she got her first broviac and had her first surgery at 7 mo., or her first engraftment at one year old; it was such a sad yet overwhelmingly thankful happy time all in one, if that makes any since. I am just so thankful to be able to write in it now. Never would I had realized this or ever not took such for granted if God had not given me this cross to bear. So as I am wiping away tears from not being able to write all the cute little normal things in her book, I am smiling and thanking God that I am writing in here now and what a story she will be able to tell when she grows up.

Monday, July 14, 2003 1:23 PM CDT
Sunday at church was one of the most emotional times I've ever had there. I thought it would be when we first came back to church together as a family or when we graduated from cry room to up front. No, it was this past Sunday when my tears began and once they did I just could not turn them off. Our priest started the talk off with how a teenage girl was having a "bad hair day" and how devastating this was for her; how she told her mom she wish she could cut it all off and start again. The talk went on to "Locks for Love", an organization where you CAN cut your hair off but you can also donate it to a child who has lost their hair from chemo, so the organization can use it to make wigs. I thought of all the children I have met at clinic on the hemo/oncology floor where Kristan goes for check ups and where she received this very chemo. I also thought of all the caringbridge families that I have also gotten to know. This as I say got the tears started then he goes on to say how material things are so not important and how we should pray for others and all those out there going through such hardships who need us. I felt like he wrote this subject by reading it off of my mind because of how much I believe this and wish everyone did as well.

Kristan's hands are looking better and not even peeling anymore. I thought today was going to be another wonderful one like the ones we have been fortunately given lately, but Logan runs around the corner and hits his head on the door facing. He is fine now but as I checked him out I find this area with petichiae all over his shoulder. I am hoping and of course praying it was from the fall itself. I noticed some on his chest in an area and under one arm. It makes me have such a feeling of helplessness when something like this happens. It gets those terrible thought soaring in my mind like; Is his platelets low? Is this the beginning of another nightmare with hlh? The list goes on. Then I stop and pray really hard and ask God for strenghth to continue this thing called life without freaking out over every little thing. It's hard not to.

Please continue your prayers for Kristan to be a survivor and that her siblings will never be effected by this terrible genetic disease. And also for the doctors to learn more about it so all of us parents that have had to deal with a child going through a bmt for hlh can have some peace of mind that we will not have to walk this road again with another child of ours. Or that some who have lost a child to this disease and would love to have more children would not have to worry about the next ones having hlh. No one wants to have to go through it again. I know this disease has a little higher cure rate than cancer but having this extra worry of having to do it all again with another one of your children is almost too hard to even immagine.

Thank you for your prayers, it means so much!

Thursday, July 10, 2003 8:57 PM CDT
Kristan has been doing great besides a couple things going on to keep her mommy on her toes. Her hands are starting to peel; it looks like there must have been a blister on the fingers and then peeled. I never see the blisters only the skin peeled in a circle, so I suppose this is what happened. The scary part for us is she did this same thing prior to diagnosis. This is not exactly an indicator of hlh but the dr.s wondered if the disease was attacking her tissues since it can do this. As far as how she looks, she seems to feel fine with a great energy level. So I've been a little nervous over it but not to the point that I think she needs to be rushed in and seen. She also has been a little rashy here and there and after her smearing yogurt from head to toe at snak time, I've noticed her breaking out in a rash on her face that looks like eczema. I'm sure it is since hydrocortizone clears it up pretty quickly. I'm thinking we are having this milk allergy again; or I suppose never got over it. She has also been so irritable which is so aweful not knowing what hurts; possibly new teeth coming in?

So here we sit with wonder as to what is going on in her little system. The really frightening and upseting part about it all is these are just a couple things that can pop up and make us wonder if it is gvhd or the hlh coming back. Gvhd is not good to have because it can become fatal and even if it does not it requires an immunosupressive drug to be administered which means it lowers their immune system and we all know how fun that is and what can become of that. The other choice is not the one we would choose either since she does have her brother's marrow-who we never knew for sure 100 percent does not have this same genetic defect.

I know it probably sounds like all we do is worry and maybe we do alot of that but, when we do I just feel like it draws us closer to God and makes us pray harder. Not only that but makes you REALLY appreciate EVERYTHING.

I had just read the Haddock's (Alexandria's) web-site and what she said is so true; how thankful it makes us when something good comes out of any suffering our children had to do. And when someone e-mails me and tells me how great it is that we have this site and how it has made a lasting impression on them it makes me feel really good. Or when my girlfriends tell me it makes them so aware of so much more now; like how fortunate they are to have healthy children and how everything else in life just does not seem as important. Funny how a challenge like this puts a whole new perspective on things; all things.

I want to thank all of you who continue to pray for Kristan, all those who are still checking in on her, and all those who have been there for us. It is alot easier to just turn and live your life in your own "comfortable" world where at the moment everything is going good, but for so many of you who have gone that extra mile when you did not HAVE to, you will never be forgotten. I know it may have not seemed like much at the time but those of you who drove to the hospital, to just be there to give us a shoulder to cry on, while we had all of our hospital stays (especially the 45 day stay) really helped us in so many ways. It showed how much you cared and we could have not done it with out you. Not to single anyone out but I know all my family would agree, Thank you Paula! She was there from the first day we entered that hospital and appeared in the entrance way where I was holding Kristan's hand as they stuck her 17 times and each vein collasped, trying to get an i.v. started since her hemoglobin was down to 5.8 and covered with petichiae. With high fever and screaming nonstop, I was not sure who was in the most pain her or Dennis and I but, there stood Paula as I looked up, just like that angel on "Touched by an Angel" and that she was.

Wednesday, July 2, 2003 6:40 PM CDT
I had just updated a couple days ago when I realized that I had not given an update on Kristan; it was just one of those journal entries I made when I was in one of those "deep thought" kinda moods. Please forgive me.

Kristan is just doing awesome, better than awesome! It is the first time in over a year that I am starting to breathe a slight sigh of relief. Now I didn't say I don't continue to pray and that I do not continue to worry but it feels so good to atleast take a couple deep breathes. She is learning all kinds of new things especially vocabulary. Actually she said her first sentence:"Daddy at work." I was hoping for, "Mommy I love you so much." But we'll take it, haha! The fact that she is showing us that she can remember things (and boy she does not forget-especially sissy stepping on her toe)has got to be a good sign of good brain activity up there.

We know her lungs, heart, liver, and her blood seem to be in good shape but we're not sure if the disease had done any damage in her central nervous system or brain.

Logan, out of the blue the other day, leans down to hug Kristan and says to her, "You are such a miracle." I told him I agreed. So sweet! I had always prayed to God before each of my children were born for Him to send me a miracle since each baby born is one in MY eyes. And this He has done, but never did I realize the extent of it.

HAVE A WONDERFUL 4TH OF JULY! THANK GOD FOR YOUR FAMILY AND FRIENDS YOU ARE CELEBRATING WITH! I must go , this little firecracker is not wanting me on here right now, she's wanting mommy time while the kids are gone with dad to the store.

Monday, June 30, 2003 5:17 PM CDT
WHY ME?
These words have taken on a whole new meaning this past year. These words I had often thought as we were given Kristan's diagnosis followed by the explanation of how it is a life-threatning, rapidly fatal disease if left untreated and that a bmt was our only chance. How the bmt also came along with it's riskes as well. That this disease is genetic and that our other two have a 25 percent chance of also being affected. How we would be taking a chance if we ever had another child, which we have always wanted and prayed for a big family. We ask, "Why Me?" Why did God choose our daughter, here from this small town in the middle of the United States? There were very few cases of this hlh and we were told how rare it was. "Why Kristan?"

As we fought this fight we met new people, we gained many friends, we learned a whole lot about life and death. I had only known one other person before this whose child had cancer-neuroblastoma. I feel so bad that I had not tried to do more for that family. How did I turn my back on these suffering people? I was so selfish that I had to even avoid her in a parking lot to avoid the feeling of fear of what to say to her. I would cry when I past her on the street thinking to myself how it would feel if it were Logan-they were the same age. I thought cancer was a death sentence and did not realize all the survivors, all the suffering that goes along with the fight, and some of the ones-many, that have earned their wings and went to heaven. You never think it could happen to you and when it does you ask, "Why me?"

Now nine months later and a whole lot of suffering, giving, and mostly PRAYING later; We ask it in a whole new way..."WHY ME?" We have seen many children not make it, we have read of many not diagnosed in time, and many who have all sorts of other rare diseases. Now our "Why Me?" is because why did God choose Kristan to show others how to not give up. How we were blessed with this miracle and second chance at life. I have been in contact with many families from all over this world who have had a child with hlh and now we have become their inspiration. God has chosen us to encourage others, to show others that there are survivors of hlh, and most important to never give up hope. With God all things are possible and we have leaned on Him through this all and He has carried us this far. He is now by our side as he as put us down, since we are now strong enough to walk ourselves but He is there in case we start to fall. We appreciate every little thing He has given us and I will never stop thanking Him for choosing ME to be Kristan's mom...
"Why Me?"

Wednesday, June 25, 2003 1:48 PM CDT
How God Picks a Mother of a Sick or Handicapped Child

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of a sick or handicapped children are chosen? Somehow I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew." "Forrest, Marjorie, daughter. Patron saint, Cecelia, etc." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one,God, she's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel" "But has she patience?" asks the angel. "I don't want her to have too much patience,or she will drown in self pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see the child I am going to give her has his own world and that is not going to be easy." But Lord, maybe she doesn't even believe in You." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasped. "Selfishness?" Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman I will bless with a child less than perfect. She doesn't relialize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see My creations. It will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing My work as surely as she is here by My side." "And what about her patron saint?" asks the angel, his pen poised in mid-air. And God answered, "A mirror will suffice."

Monday, June 23, 2003 4:46 PM CDT
GREAT NEWS!

Kristan had a great report; all blood counts that had came in while we were there were in the normal range. YEAH! I was very happy and relieved, especially seeing a normal hemoglobin-11.4, a terrific wbc-9.9, and even the platelets for the first time since transplant-185,000 were normal. The liver enzymes that were elevated were just fine too! We go back in 3 months for our ONE YEAR elavuation with blood work and bone marrow aspirate. The things now to keep a watchful eye on (o.k. in other words to worry about) is gvhd that can happen at any time. It is more unlikely since she had a perfect matched sibling and given her age but of course we still watch for skin problems, gut or liver problems. So far so good. She did not like getting poked and it broke my heart. I kept saying thank you God that she was not this age starting out and even though at the time I thought it was worse her not being able to tell me where it hurt maybe it was better this way. I feel for parents with older children who tell them their pain; how tough that has to be.

It was wonderful to see everyone there at clinic since they have all helped so much to get her this far; especially our terrific doctor. We discussed how there are more and more children everyday being diagnosed with this rare disease not because there is something more out there causing it but rather more doctors are being aware.This is great because hopefully they will catch more in time and have the same wonderful results we have.

By the way Kristan has gained 5 pounds in 5 months which is so good given the fact she was losing weight at first and not eating; she now eats everything.

"I want to thank you God for blessing me with this precious miracle of a daughter. My first reaction going through this was WHY ME? Now it is thank you for choosing me. Thank you for giving me this trial, showing me how to keep my faith in you, and giving me the strength to make it this far. Thank you for using Kristan to show other's how miracles can happen through your Grace. I love each of my children and know what miracles they are. The most important; thank you for showing me how to not take life for granted, that this life is not the important one and to hug my children a little tighter each night. I come to you this day not to ask you for ANYTHING but to thank you for EVERYTHING!"

Thursday, June 19, 2003 9:05 AM CDT

We went to St. Louis yesterday to Children's and had two post bmt tests done-the PFT and the EKG, and ECHO. Kristan did fine as far as the sedation went but they mentioned she was 80 percent restricted. I asked many questions about what this meant but was not given a complete answer because they were not the doctor and was unable to say. They did help ease some fears and explained that as far as having any obstructive breathing she was great on that. They even said in an older child 80 percent was still considered in the normal range, but given her age, etc. it was not. I am very anxious for Monday to get here now so we can talk to Kristan's doctor, I know he will know what is going on and if we need to worry or not. The PFT people did say they would not worry, o.k. if it was their child who just went through what she did they would worry over such too I'm sure. I did feel better too after talking to my pulmonary girlfriend-she cleared up a few things. BUT, you know me Miss Worry About EVERYTHING! I'm not too concerned about the heart test because the one who did it was sure everything was fine, of course she had to add, "I'm no doctor, though." I just do not like the waitng to find out anything. On the otherhand I'm sure they would call if there was something major going on; they're not going to wait until Monday and say, "Oh yeh, there is something major going on, too bad you did not call and remind us, we could have done something to help this."

As far as the going with out anything to eat before her sedation, that was the hard part since she refused breakfast that morning. She took the medicine fine this time; usually she ends up gagging and most doesn't stay down. They put her in this little bed and with one of the test she is totally enclosed in this glass box; I did not care for this because it looked terrible seeing her like this. I shed a few tears thinking how hard it must be on parents whose child is in picu on a machine, like baby Noah. It really broke my heart to even think of such, much less to go through something like that.

Kristan is doing great and looking good besides she has had a stuffy nose off and on for a week now, only in the morning-like she has trouble breathing through her nose, but during the day she is fine. I'm wondering if she could be starting allergies since she has sneezed several times this morning, we'll see. I better go for now but I will keep you posted. Please pray for good results, especially for Monday when we will have alot of blood work done-the first time in 3 months. I am so anxious about it!

Sunday, June 15, 2003 8:10 PM CDT

Happy Father's Day to all you father's!
My father is so special words could not begin to describe the man. One thing is for certain and that is God could have not gave me a more perfect dad. My dad had even lost his dad at a very young age yet somehow he has always known how to be a dad. He was and is always there for us; teaching us from an early age to be strong and that we can handle all that life has to offer us and because of him I have held to gather when the going got really rough. He was always there to tell me Kristan will be o.k. and she has been. My father was the one who drove us to St. Louis for every chemo appointment my little darling had and on several of thse trips I would be in tears thinking of what the future may hold. With his smile and the way he just knows the right thing to say it was so comforting. It made me think back to when I was a little girl and he always "chased away the monsters" and made me feel so safe. He just always has a way of making things seem safe and okay; it is such a good feeling. Several years ago his world was changed by an accident (a fire) that could have taken his life. Instead it took his innerself; making him unable to work, lose some of his memory, concentration, and lots of his strength. One thing it did not take away is the love he has for his family or our love we have for him. It took some time but he is now overcoming all thses obstacles and I am sooooo proud of the BIG, STRONG, DETERMINED man; I call my dad! I love you dad!!!!!!!
My children love their Grandad, too!!!

Wednesday, June 11, 2003 12:52 AM CDT

Today is a wonderful day...no fever and no other person in the house coming down with whatever Morgan had. Kristan has been really irritable and wanting mommy constantly over the last few days and has been restless at night. Something is going on with her just not quite sure what, maybe over stimuli? She is a wild child and her nurses and doctor are not going to recognize sweet baby girl who used to sit ever so quietly on my lap at clinic visits. Look out clinic! It will be three months since our last visit, wow! Clinic visit is June 23rd for blood work and check up. We go next Wednesday for post bmt tests including pulmonary function and heart. Please pray for good results. I had asked the lady who scheduled the lung test exactly what they are looking for. She explained several things including infections, damage, and growth of the lung. Growth as in sometimes there is a complication and their lungs do not grow right after a bmt...o.k. that scares me, what then? Didn't want to know so I didn't ask. The organs that are mostly effected by this disease and the bmt she received is the liver and lungs. This is what I have found through what I have read anyway.

Jeremy, the little boy who is in the bmt unit for the same aweful disease Kristan had, is doing great! He has done so well it truly amazes me and goes to show no two do the same with a transplant. It does of course make us wonder why Kristan had such a rough time, I think HE is just Super Baby.

Thank you again for stopping by and checking on Kristan. It simply amazes me that when I came to this site today I was number 11, 215! Wow, that many hits since January.

Monday, June 9, 2003 9:22 AM CDT

I wanted to report that Morgan has went a day without fever and we are starting the beginning of another fever-free day. PTL! I know I probably sounded like a "over-the-edge" mother but I can not help but to panic. It was not only the fever; a couple days ago I had noticed some blisters and peeling on her feet (I guess it was the new sandles), then a couple days later she kept complaining of her stomache hurting if she jumped. O.k., this sounded like something could be swollen in there to me. She would cry and said it hurt really bad and I did not panic too bad because I thought to myself, well atleast she's not having a fever! Then when her fever started she complained of headaches so bad that she did not even want anyone to talk or even the t.v. on. With hlh, the disease Kristan had, it can start with fever or sometimes unfortunately it can start with cns involvement: seizures, ataxia, brain damage, and blindness. For some reason I think headaches could go along wiht these. As far as the blisters; Kristan had these blisters all over her hands and feet, that would continally make new ones as the old ones peeled. We believe that the hlh could have started attacking her tissues since it can attack organs, it chose her tissue, liver and spleen. We are so thankful it did not choose her cns.

Anyway, Morgan seems much better now and so am I. Thank you God! It has been a very emotional weekend considering it was the one year mark of her going to the hospital and getting sent North to the specialist to our other daughter going in to see the same doctor. We were fortunate that they moved the Ped's clinic to the other hospital so it was not the same location. I think if it would have been I would have had a panic attack, I'm sure I would have. The breathing they teach you in child birth classes comes in handy sometimes!

Kristan has a stuffy nose, is irritable, and has a few little "pimple-looking" bumps here and there. So we will see where this adventurous day takes us. Thank you all for your prayers! Someday I will not be such a worry wart...yeh right! I think this had to have happened since a couple journal entries ago I was bragging on how my children had only been sick a couple times in a year. I should have knocked on wood, my friend!

I am sorry we are having technical difficulties with the guestbook, thank you for the e-mails.

Sunday, June 8, 2003 4:37 PM CDT

I AM ASKING FOR A COUPLE PRAYER REQUESTS. FIRST OF ALL MORGAN STARTED HAVING A FEVER LAST NIGHT AND EVEN THOUGH SHE IS BETTER TODAY IT STILL BRINGS ABOUT ALOT OF WORRY, due to the genetic disease her sister had. Which brings me to ask for prayers for our family, who myself being the most paranoid, stress totally out at any mention of fever in this house. This is usually the first symptom of hlh. I took her to the hospital today, would I have if this had not happened to Kristan? NO. But for a little peice of mind I had her looked at, which is quite a joke since no blood work was done and everything else looked fine-no strep, no ear infections- the doctor was happy to report. I on the other hand was thinking great, I was actually hoping she had only one of these. Unexplained fever is the worse; like I say I was hoping to find some reason for the fever. As long as it stays away I can breathe.

It does not help that one year ago today we were at the hospital, same doctor on call, with Kristan. This was when we were told her spleen and liver was really swollen go straight Children's, do not pass go, do not collect... You get my point. I am very nervous, tense, and extremely uptight. So in other words I'm not very good company today!

THESE ARE PHOTOS TAKEN AT PENNEY'S. I WAS VERY HAPPY WITH THEM; MY LITTLE SWEETHEART! KRISTAN BY THE WAY IS DOING JUST FINE, JUST STAYING AWAY FROM SISSY!!!!!

Thursday, June 5, 2003 9:07 PM CDT

(((((Have you ever saw someone whom you have not seen in a while that cares alot about you? How their face lights up as they smile the biggest smile and greet you with open arms ready for a nice embrace? This is how my sweet baby, Kristan Grace does at least 50 times a day when she sees her mommy. You would think, when I walk in the room where she is, that she hadn't seen me all day. It is so special it just melts my heart.)))))

Hello all you wonderful people out there; wonderful for stopping by to check on Kristan. She has been a little ball of energy, no stopping her! From pulling everything out of the cabinets to learning to climb on furniture, etc.; she is just a little mess. She has learned a lot of new words and is starting to tell me what things are without me telling her the word first. Kristan is even recognizing people in photos and telling me who they are; I am sooo proud. We have not yet noticed any delays even though at first she did not walk until she built muscle and strength up in her legs this too was to be expected given the time down she had recovering. What an appetite she has also eating anything I give her. This is so amazing given the fact of how picky of eaters my other two are. She amazes me everyday!

Tomorrow is big brother Logan's Birthday! Yeh! BIG 5 YEARS OLD! He is ready for his super hero party, very excited. We are hoping it doesn't rain, but if so we are going to celebrate Sat.. And boy are we going to celebrate as each Birthday each year brings us further away from the likely hood of hlh being there with him. Every single thing in my life has more of a special meaning-right down to and including ESPECIALLY Birthdays! That is since diagnosis, oh how it puts things in perspective!

One year ago today Kristan had her first fever indicating this disease hlh. It was on Logan's b-day that we got the dreaded call saying..."Kristan's blood counts are a little screwy (meaning all her counts were LOW) and we are referring her to a specialist in St. Louis. Which hospital do you want?" After I stopped crying long enough to talk as I picked my heart up off the floor and sat down, I said Children's. We were so glad later that we chose this one since we met her awesome dr. there who found this rare disease, along with meeting some of the greatest people. From the patient's parents to all the nurses and doctors they have all been wonderful. We could never thank them enough for what they have done, but the one main one we thank each and everyday is of course...God! We had planned a big party last year for Logan and of course after this shocking news we threw together a very quick one that consisted of immediate family and few more family members. At this point we did not know if she had cancer or an auto immune disease given her counts. It was so scary it is just unimmagineable of what goes through your mind. You feel like an overwhelming "she is going to be o.k.", mixed with a little, "Is she going to live?", mixed with alot of "I would rather die than see her go through this."

I can not believe it has been a whole year, that she has survived a whole year! -Given the fact that they are given a 5hance of survival without transplant with a median time of two months survival from onset-Yikes, that was a little scary!-And that we are 8 and 1/2 months post bmt...wow! COME ON YEAR! Is what I have to say since even more things are not as big of risks-gvhd, cmv reactivated, other viruses including chicken pox, and of course all the minor things like relapse of the disease, loosing engraftment (these are actually the biggies). I know this probably sounds like still alot to worry about and it is, but I am very optimistic and above all I know God gave us this miracle Kristan Grace for a reason to share with all how wonderful He is and to give all glory to Him because without Him we would not be where we are now. Down on our knees!

And whatever you ask in prayer, and believe, you will receive. Matt. 21:21

Saturday, May 31, 2003 2:48 PM CDT
I want to start by first thanking you all for continualy checking in on Kristan and for all the e-mails and phone calls last week since some of you could tell I was really stressed and worried about her and the symptoms she was having.
*** Special thanks to you Marsha for always being there to listen and to help; you have been such a help and a great friend through this nightmare we have had; you have been there through it all-most people would have ran the other way!***

Kristan is doing much better! Thank you God! She is not even looking pale to me anymore and the gi problems have stopped. I think she may have had this little bug going around making people have naseau, which could explain why she looked so under the weather. Logan had a little cold or allergy that lasted one day and is now better, then Morgan has gotten it along with a sore throat. They are so good about staying out of her face when they are sick which makes me so proud of them. I'm sure Kristan will get it next though since she grabbed the medicine dropper from off the table that I had just given Morgan some with and was sucking on it. Yikes! I felt like a real good mother, I forget how tall she is getting- now in the whopping 5th percentile.
One of the late effects of bmt's are growth and developemental delays- as long as we have good health we can handle being a little smaller or a little slower about things. We are so thankful that she is doing so good! We have been very fortunate on the staying well, since Morgan had went back to school for the last quarter- Kristan had only gotten sick once-not bad for a baby with low resistance and an immature immune system. I swear by GERM-X and of course good ol' hand washing, it's amazing!

I plan on getting those vacation pictures posted this weekend, I keep forgeting to get them developed. Please keep Jeremy in your prayers- he is the little baby who had hlh like Kristan and has received his cord blood a few days ago, he is sooo sweet. His site is on the bottom of this page.

Please keep us in your prayers, post bmt tests and blood work is coming up soon in two weeks-uugh, dread that!

I FEEL LIKE HER GUARDIAN ANGEL HAS DONE A WONDERFUL JOB AND HAS HER WORK CUT OUT FOR HER...she's such a little mess that Kristan Grace!

Monday, May 26, 2003 5:42 PM CDT
WE ARE HOME! We have drove over 1,500 miles and saw 5 states in 4 days, in which 95 percent of the time was watching (or should I say listening to, for us) Barneys. The hard part was entertaining an 18 month old during this travel time; it was mostly Barney and french fries dipped in bar-be-que nugget sauce.

The fun part was the awesome weather, the beautiful beaches at Gulf Shores, and all the fun watching the kids have so much fun. Kristan even got to put her feet in at the edge of the ocean and walk on the sand. This did make me a little nervous since post bmt they are not suppose to dig in soil but we were careful. It seemed as if germs just did not exist on this trip; maybe I blocked them out. We were, however, very excited that we stayed in a brand new hotel being the first ones to rent the room we stayed in; how germ-free is that? Kristan even was able to get in the luke warm hot tub(for a very short time) since we were like the very first ones to get in, WOW! The t.v. remote was still in plastic, how cool was that?

I would say it was one of the very best vacations we have had; I just wish I could have left some of the baggage I took along at home-like the WORRY. This I'm afraid follows you where ever you go and is hard to leave behind.

My concern was lately Kristan has looked a little pale to me (maybe she's been nasueated), I've noticed some petichae here and there-mainly on her body not her face at all (maybe they're from the ride in the carseat or the strap on it around her legs, etc.), she has a few places that has peeled in between her toes like she had when she was first dx with fhl (maybe it is from the swimmy shoes and sand), she has been very irritable (I actually just noticed a new tooth trying to come in), she's been a little more tired (she's been totally out of routine and on a long trip), and for the icing on the cake I changed a dirty diaper earlier and found (sorry to gross anyone out) blood-tinged mucous in her stool. She had this off and on in her stool since she was 6 weeks old and through trial and error we associated it with a milk allergy that she just three months ago grew out of. In the back of my mind I always wondered if it was the disease attacking her gi tract the whole time and then it finally healed; who knows. Because of all of these things I am very worried yet I am trying to stay possitive and as you see trying to come up with other logical anwers. She may have a stomache bug which could cause some of this.

Over all it was a wonderful time filled with lots of excitement and adventure. From the dolphin we saw thinking it was a shark at first and causing Logan to about freak out to the huge fire explosion in the parinking lot in the area where we parked thinking it was our suburban on fire as dad raced across the sandy beach as the kids were screaming and crying (we were probably the only ones that freaked thinking it was ours when we heard it was a vehicle on fire)****I GUESS WE OVERREACT SOMETIMES****.

Thursday, May 22, 2003 1:52 PM CDT
This will be a quik entry because we are in the process of packing. No, not for a hospital trip but actually for a VACATION! Can you believe it? Me neither but I will when we get there. We decided last minute to head to the beach in hopes for a little R and R, and no rain.

Kristan is feeling great and actually slept better last night than she has been; a 4 and 1/2 spand of no eating. Yes, I know she should be sleeping through the night by now, being 18 months old, but you know what? Who cares, is what I say. I'm sure she will some day; maybe when she's in college, haha! The spots Logan had on him ended up only being mosquito bites I assume since they eventually went away. How crazy how something this minor can really stress a person out (since hlh presents with a rash, it was kinda nerve wrecking). We had a really nerve wrecking week (or should I say YEAR) and just feel the need to get away. I am a little worried about being so far away, not close to OUR specialists, and being around SO many people this weekend; but I am soooo ready to make some happy memories with my children. I'm ready to see them smile when see the ocean, laugh at the sand tickling their toes, and not just sit and worry myself into a complete nervous wreck. Dennis was kinda worried about SARS and I told him actually chicken pox scares me worse than that especially when I have talked to two moms who knew children who had them and had been given the immunization for it, not sure how that happened. I guess sometimes they work and other times they don't.

I'm not even sure if this trip would be okayed, but I'm thinking it would since our doctor lifted all restrictions. He didn't say all but the beach. So we are off...wish us luck and happiness!

I will post some fun in the sun beach photos soon.

Thursday, May 15, 2003 6:34 PM CDT
Hello my supportive team. I hope you all had a terrific Mother's Day. I most definately did having my three beautiful, healthy (right now anyway they are), miracle children to spend the day with. Also with MY wonderful mother, who I could never repay all she has done for us. She is the most UNselfish person there is and she really has given up a lot to help us. She put her life on hold to care for our children when we had to relocate for 80 days. This meant leaving her home and my father behind (he was able to come visit a few times). She was not only there for us physically but mentally as well and had to keep us together when we thought we were going to lose it. My husband would take turns with her and she would stay in the unit with us; which is the one thing she did not want to do because it broke her heart so to see Kristan this way, plus the word SLEEP was unheard of for us in the unit. I was breastfeeding so I did not leave but on one occassion for a few hours with my children, SHE was the only one in this world that I would have let take my place in there. To put it in a nut shell...She has been there through this whole ordeal and for this I AM SO GREATFUL. This is why she more than anyone besides my husband and I know exactly everything that we had went through. BY THE GRACE OF GOD WE HAVE ALL MADE IT OUT WITH OUR SANITY TOO, WOW, THERE'S ANOTHER ACCOMPLISHMENT!

In two days, May 17th, it will mark one of the one year Anniversaries this being the one year ago Kristan had became ill for the first time and was diagnosed with cmv, which two weeks later started the process that led to the diagnosis of hlh. I wasn't sure how I would feel but I have noticed a lot of sad feelings rushing back at me. I hadn't cried in a while over this whole experience until lately it is all starting to replay in my mind. How at this time last year Kristan was a completely healthy little baby girl and my biggest problem was chosing where to go on vacation. Now one year later, feeling like I've aged atleast ten years, an experience of witnessing a miracle, but yet still having a lot of concerns and worries unanswered, you just kinda feel OVERWHELMED. You see friends you haven't seen for years and they ask what you have been up to; you feel like saying DO YOU REALLY WANT TO KNOW?!

Today was a very special day for Kristan and me. I have not been able to have her picture taken in a studio(all you out there with children who have been neutropenic can understand this one)since last January. So the last picture I had taken was with her baptismal gown on I made her and she was so pale because of the anemia she had; I'm sure the white gown and background did not help this either. Her and I went to Penney's today and she did way better than I thought she would; a perfect angel. I just hope I didn't scare the girl taking them too bad because before I could turn around she had this old stuffed Pooh bear out and ran it down her face (to make her smile) and I kinda freaked out and said NO PLEASE don't because of germs. I'm thinking o.k. I'm sure that thing has not touched about a million other children, anyway you get my point and so did she after that excitement. She did an awesome job and I will be requesting her from now on when I go back for my other two children.

It really shows me how much things have changed since Morgan was a baby I had her pictures taken every month for the first year and it was starting to become a hastle after the first six months, but I continued it since I started it. Now it's been 15 months since this little sweetheart had hers and it has been the most awesome thing; never would I think I could be this excited over a photo but I can't wait to see them. They come in June 6, Logan's b-day.

Kristan is feeling really good and is amazing us everyday. She is still sleeping with us and yesterday morning she woke up and the first thing that came out of her mouth was,"I Lo" this is how she says I love you, it was priceless! Logan has a couple of these red bumps on his wrist and hand and I'm nervous, as usual when they start to get any type of rash. I had been in touch with a lady who explained how her child who had hlh started having these bumps that looked like bug bites but they spread and did not go away. So of course, I am freaking out and praying very hard that it is nothing but my immagination; I sometimes seem to have a good one.

Please remember little Kody boy in your prayers, he had brain surgery today. I feel for his family and could not begin to immagine how frightened they are. They are very strong in their faith and know God will see them through.

SORRY THIS IS SO LONG. THANK YOU FOR VISITING AND PLEASE CONTINUE TO PRAY FOR KRISTAN TO BE A LONG TERM SURVIVOR!

Saturday, May 10, 2003 3:27 PM CDT
I WANT TO WISH ALL YOU MOMMYS OUT THERE A HAPPY MOTHER'S DAY! WHAT A BLESSING IT IS TO BE A MOTHER; ONE OF THE BEST GIFTS GOD HAS EVER GIVEN ME. RATHER YOU ARE AN EXPECTANT MOTHER, ONE WITH 1 OR 10 OR MORE CHILDREN, YOU WHO HAS LOST A CHILD, ONE WHO HAS ADOPTED, ONE WHO HAS GROWN CHILDREN OR A NEWBORN, ONE WHO IS A GRANDMOTHER OR EVEN A GREAT-GRANDMOTHER YOU ARE SPECIAL PEOPLE WHO DESERVE A SPECIAL DAY! CELEBRATE!

You may have noticed I added a couple new links at the bottom of this page; one is a brave little boy, Kody who was diagnosed over a year ago with an inoperable brainstem tumor (immagine being told this), he is the only living person with this type of tumor yet over this past year he has lived like a normal healthy child. He has just recently began showing signs that they are unsure if it is the tumor growing or hydrocepheles, they are praying it's not the tumor but the other causing him problems. Please keep them in your prayers; they are very special people. The other one I added is Jeremy who will be entering the hospital Monday for his conditioning and then cord blood transplant. He was the same age as Kristan at dx and they were diagnosed with this same terrible disease hlh which is cured through a successful transplant.

THESE TWO MOTHERS ALONG WITH SO MANY OTHER ONES I HAVE GOTTEN TO KNOW THROUGH THIS JOURNEY; JACKI-ANDREW'S MOM, CHRIS-AMARIAH'S MOM, ALISON-ALEXANDRIA'S MOM, LISA-JACOB'S MOM, KAREN-ANNA'S MOM, JOHNELLE-KALLIE'S MOM AND MANY MORE HAVE REALLY HELPED ME ALONG WITH MANY OTHER'S TO NOT TAKE ANYTHING FOR GRANTED. IT HAS SHOWN HOW LITTLE THINGS DO NOT MATTER, HOW TRULY BLESSED WE ARE, AND TO GIVE THANKS TO GOD FOR WHAT WE HAVE BEEN GIVEN. THEY ARE TRUE INSPIRATIONS FOR US ALL!

Kristan is doing really good and as the photos show is constantly growing and changing. God bless you all and have one terrific Mother's Day!

Thursday, May 8, 2003 6:31 PM CDT
Hello, all. We went to Children's Tuesday and talk about a wasted trip, this it was. I thought we were there for a post kidney test when actually we had been scheduled for a pulmonary function test to see if there has been damage done to the lungs, since this can happen after a transplant. When we arrived at the wrong area and was sent to the new location they asked the last time Kristan ate. "On the way here", since we did not know a sedation was ordered. Part of this was my fault for thinking it was for the kidneys but, they said it was their fault because they did not call for a reminder or orders what to do. We had the choice of sticking around and having her do without food, which was including her lunch and she was already hungry and chance her aspirating on something since it would be pushing it anyway to fit her in. So of course we did not take the chance and tried to reschedule.

Now when they do it next time they will also include the heart test; ekg and echo which will make it nicer so it is only one sedation instead of two. Also we are still waiting for someone to get back with us over this mri.

The problem is they can not fit her in until the end of June if she has to have a general anesteshia, this would mean she would be 9 months post bmt and my point is; is she going to turn around and have another at our one year Anniversary? I am hoping she does not HAVE to go under general anesteshia and am hoping to hear something soon. We were able to see several people (mostly doctors and nurses) that we have not seen in a while and they all thought Kristan looked so good and could not believe she was walking, had teeth and hair, and no big chubby cheeks from the steroids. She had went from 22lbs. at 11 months due to all the fluid retention and steroids to down to 19lb.s mostly because of the water weight loss and the nausea after. To now she is around 21lb.s maybe a little more and a whole lot taller. They had all seen her at her worse, so they were happy to see her looking this way.They are are such awesome people and such a good team; so caring.

Some how the scheduling of her post bmt testing got really messed up and they originaly had her schedule for the test I spoke of at 11:00 a.m., which meant nothing to eat after 5:00 a.m., they then had her down for the mri which meant after this sedation she would have just had, she would have to continually go without food and go under general anesteshia at 3:00 p.m., then while she was still out after this long test they were going to send the heart people in to do their job; which would mean if everything went as scheduled she could probably eat again around 5:00p.m. or later. I DO NOT THINK SO! NEW PLAN!

The mri makes me nervous since unfortunately this disease she HAD can initially cause cns involvement, which thank God she did not have since something like 75f them do. We know how we were given all these miracles and I am so thankful to spend this Mother's Day with all three of my little Blessings(my children). As a mother none of us want to see our child go through anything that we can not fix. Grandmother's included because I'm sure it feels like one their own.

On another note; my Morgan is getting so big, she just learned to ride her bike with no training wheels(I know she would have learned this last year, but we were in and out of the hospital and was not taking Kristan anywhere since she was so neutropenic) and our mind was so foggy with such worry and anxiety about what the future would hold for our baby and the drugs she was on did not allow her in the sun so we did not have a summer last year. Morgan also learned today from other students there's no Easter bunny. That's really sad. Where does their childhood go? It goes so fast! We have been going for walks everyday and I have really been trying to make up for all our lost time and their lives being put on hold. I just feel really bad for them, especially after I read a little book Morgan wrote at school. "My Feelings" (things that made her happy, mad, etc.); On the page that read what made her sad she drew a baby in a bed with a little girl curled up beside her and a mom right by the bed. It read,"What makes me really sad is when my baby sister was sick." Talk about the tears. How sweet and innocent they are.

THANK YOU ALL FOR BEING SO SUPPORTIVE; AMAZING HOW EVEN TOTAL STRANGRES COME TOGETHER AND HOW THEY HAVE SHARED IN OUR TEARS AND LAUGHTER! THANK YOU FOR BEING THERE!

Saturday, May 3, 2003 6:26 PM CDT
I am so excited that I figured out how to add this slide show and I hope you all enjoy it. I know a lot of these photos are older ones but, they are some of my favorites. I have several rolls that I can not wait to get developed and scanned to create a new show for you; I just hope it doesn't take too long to load for you. I figure by the time you read my long winded update that...WA LAW! PHOTOS!

Kristan is doing great! She's walking everywhere and running. She's into everything! Think I'm complaining? No way! I could not wait for this day, since how I never knew if I would see it. Thank you God is what continually goes through my mind!

Kristan did give me a little scare yesterday with a rash that popped up from no where. The mind began to race...hlh rash? gvhd rash? Anyway a little hydrocortisone, a prayer and it is history!

We go to Children's Tuesday for more post bmt test-kidney function, then we are waiting on a new date for mri. I found out one person said general anesteshia and clinic said oral sedation, so I am waiting to hear. I am hoping not a knock out since this makes me so nervous to take any unnecessary chances of associated risks. I will keep you posted, so go enjoy those photos (they should be loaded by now) and check in later for new ones, they have some cool things on this Zeo cast! Click on the photo as it falls.

Tuesday, April 29, 2003 4:52 PM CDT
HELLO, ALL. I hope you are enjoying this beautiful day! What happened to spring?!
We went to Children's yesterday and had Kristan's post eye exam and last look at her leg where she had broke it a couple months ago. I really wasn't too worried or nervous about the eye appoitment thinking it was going to be a quik look and out the door we would go. Well, I was glad that I did not know before hand what all they would be looking for; it saved me unnecessary worrying. They dialated her eyes then used special equipment to look behind the eyes to check for infection, hemmorages, and any rejection (which I did not know was even possible to see to begin with). He would say that this may sting a little with the drops they put in or they usually don't like this part. Kristan was a perfect little angel. I was thinking, she's been through a lot worse than this, mister. Of course I didn't say that. He said her eyes looked perfectly clear no restrictions, YEH!

Then we were off to the bone doctor. This little experience about gave me a heart attack~to say the least I was on the verge of having one. First off three doctors entered the room and ask if I was sure this was the right leg she broke. I told them I thought it was the left but the girl insisted the right because this is what the papers said. No problem we took another picture. Three doctors again entered the room together, one holding the x-ray. He asked, "Now what was it again that she was diagnosed with?" When I gave him the big long term for hlh they all shook their heads and said, "OH!" My mind began to race thinking they meant "OH!" as in well, that explains why these x-rays look this way. He points out the fracture has totally healed and how good it looked. I'm sitting there waiting on the "But..." and he says she looks great. I told him why I was nervous and they said they were just wondering the name of the diasease. WHEW! The good news is that he saw improvement in the bone density already and saw no reason to return. YEH! again.

It is always very scary to have more than one doctor come in your room because a lot of the time, in my own experience and talking to others they agree, it is usually not the best of news. This is why I was very nervous.

Today I talked with a girlfriend on the phone and we discussd how it is so hard for anyone to understand what it is like to have a sick child and we do not expect anyone who has not been through it to understand completely. I never would have untill Kristan became sick last June. Even though she is great at the present time does not mean we do not have the constant worry and fear, so much could still happen. We do try really hard to not even think about any of that and are just thankful that we have her here with us today. We were discussing how others say even though they do not have a sick child they have other worries as well. I am sorry but to have a child with cancer, a life threatning disease, or especially to lose a child has got to be the worse thing in the world to possibly go through. I feel nothing compares to seeing your child suffer and the not knowing what the future holds or the terrible tragedy of losing one. I feel like you all out there that send us all these encouraging words are the best support team we could ask for. I know some of you do not have a sick child and I am so thankful of this as I know you are and it is very special for you all to take time out of your day to check in on us. THANK YOU! Those of you who have been through it I know understand and even though you are already carrying a heavy load to care so much about another is so amazing, THANK YOU SO MUCH!

Tuesday, April 22, 2003 6:35 PM CDT
I hope you all had a great weekend! We really did and for the first time in a long time it even felt near normal. We went to church and even sat in the very front. When the song "This Is The Day The Lord Has Made" was being sang Kristan was standing in the pew with her hands folded (as if praying) and was dancing. I could not keep the tears back, it was just priceless! It was as if she was thanking God herself. She is just so precious and so very special!

She also learned to walk Sunday. She had been taking several steps but would lose balance which was starting to really concern me. Now that she's been on an antibiotic I can't help but wonder if it helped with the fluid she had in her ears, because she is now walking like she had been for months.

We are scheduled for all the testing they do post bmt like; a MRI, a kidney test, ekg and echo. This coming Monday we go to Children's for the last appointment with her leg and an eye exam.

KEEP THOSE PRAYERS COMING! WE NEED GOOD TEST RESULTS ON ALL THE ABOVE!

Friday, April 18, 2003 4:22 PM CDT
I WANTED TO WISH YOU ALL A VERY BLESSED EASTER WEEKEND! I HOPE YOU ALL GET TO SPEND IT WITH YOUR LOVING FAMILIES.

During this occasion it makes me think back to a year ago when we were a month from Kristan getting sick the first time with cmv, then it triggering the disease she was diagnosed with. Amazing how one day can change your whole outlook on life. Was I as thankfull last year of all the precious gifts He blessed us with or did I stop and think of all the suffering He went through for us? Did I realize what Mary went through to see her child, that she bore in her womb, suffer so much? Did I realize the pain in Her heart? Did I stop and thank God for all the little things that we take for granted? DID I REALIZE WHAT IT WAS LIKE TO CARRY A CROSS OF MY OWN?

I do not think I realized any of this so much as I do now! Seeing Kristan's system being knocked completely out and given a new system, almost like a new life taking hold. When we left the unit we were to treat her like a new born baby. How many people really get this oppurtunity to see this take place? I try to look at it this way; like having a baby twice. Like she was given a second chance at life.

I AM SO VERY THANKFULL TO GOD FOR EVERY SINGLE THING HE HAS GIVEN ME, I HAVE NEVER IN MY LIFE FELT SO BLESSED. I know usually I ask you to ask prayers for us; today I ask you to thank God for everything He has given you!

HAVE A WONDERFUL EASTER!

Thursday, April 17, 2003 8:27 AM CDT
Kristan is feeling much better. She had another nosebleed yesterday most likely due to sinus problems with this sinus infection. Since her counts are good and I have had a lot of reassurance from friends~THANK YOU!~I've decided not to worry about it. O.k. me not worry;ha! anyway, I will try.

I can't believe how good she did with this cold, much better than any of us in this house including myself. I'm not sure what I expected her to do, but she amazed me once again. The power of prayer, how great it is!

I have a dear friend from Austraila that I have met due to these terrible circumstances called disease, who needs our prayers. They are not sure if a transplant is in their future, but if so we pray that her child along with all the others going through this will do great and have as great of results as we have. I will add, in the next month or so, another link to this page for a little baby (Kristan's age that she was) that is going to be having a transplant for this same disease. We wish them all the luck and many prayers sent their way.

GOD BLESS YOU ALL!

Wednesday, April 16, 2003 10:19 PM CDT
I AM HAVING TECHNICAL PROBLEMS CHECK BACK SHORTLY, SORRY!

Monday, April 14, 2003 3:08 PM CDT
Kristan got her mother's heart beating really fast today with a little scare she gave me! She was coughing more today and her nose was not a pretty sight so I decided to take her in just to make sure it wasn't settling anywhere like the chest or ears since she was up off and on all night. Plus the fact I started seeing a few petichiae which freaks me out anyway last night, so I needed peice of mind getting her seen. They scheduled us in and we were getting things ready to go, when I look at her and her nose was bleeding. After I picked my heart up off the floor and of course stopped the bleed I called back and asked for a cbc; of course they agreed.

She checked out fine; ears looked good, lungs were clear, and best of all her counts were good. I should say excellent! Wbc-6.5, plt.s-113,000, and best of all the anemia she has fought her whole entire life, 10.3 being the highest before transplant and 10.7 the highest afterward WAS...11.3!!!!!!!! Can you believe it? I can not!

Since her nose was pretty nasty and given the fact it did bleed could indicate a slight sinus infection. So we started a round of antibiotics, given the circumstances ;she felt better putting her on these. I think I do too, as a just in case. Better safe than sorry has a whole new meaning in my life. I have girl friends who have children who know how I am and know what I will tell them when they ask my opinion as to rather to take them in or to wait. I think sometimes because of what we have been through has also made people around us a little more catious. There is nothing wrong with that when it comes to your child, because we never know.

I thank God for such awesome news today on her counts! He has continued to bless us with so much. **Thank you for visiting us and all your kind words, have a great spring day!**

Saturday, April 12, 2003 9:52 PM CDT
It's been a very busy week, sorry it's been a while since I wrote. Morgan and Logan are done with their spring cold they had but Kristan is still trying to fight it off. I think last week when I had thought she was getting it that it was irritability from cutting teeth. I thought she was handling it a little too good, better than I was. Now I think she is just starting it with a runny nose and cough, uugh! Anyway I hope she gets to feeling better soon, being sick is no fun!

We go to St. Louis Monday to get the release from the dr. that was treating her leg, he wanted one last follow up.

Kristan is getting stronger everyday and is walking better and better. I still don't just let her go on her own because she is too wild and may just take off running and fall. I think she is real use to the idea that mommy will catch me, so she sees no danger.

What a beautiful day around here, we got a lot of spring cleaning accomplished and I am exhausted so I will keep this short.

THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT IT MEANS SO MUCH!

Monday, April 7, 2003 8:40 PM CDT
I wanted to let everyone know we just got word on Kristan's engraftment and God has answered our prayers once again...100% engrafted! Thank you God! Praise the Lord! I can nor will ever stop thanking God for this wonderful experience He has given us, the many miracles He has sent us. Even though we have endured some suffering it has brought us closer to Him, this must have been His plan. Challenges in our lives usually do this to us, since we know that only God can see us through. We must keep our faith and trust in the Lord.

I was very touched by an e-mail I received today from a lady who thanked me for Kristan's story. She said we were an inspiration and gave her hope since she also had a child battling this same disease Kristan had. It meant so much to me to hear her say this, because this too is what I prayed for. That Kristan's story could some how help others going through this and give them hope. Please keep this family in your prayers.

As far as the sickness update goes around here, Kristan is still doing great and has not developed the cough part of this cold. She isn't eating much and you can tell she doesn't feel good, but she doesn't let much slow her down. One thing about bmt's they make you tough, (haha!) other things are a cinch to deal with after all she's been through. Our other two continue to cough their heads off, so miserable since medicine is not helping this. My allergies are terrible, but I am not complaining, I have too many things to be happy about, life!

Sunday, April 6, 2003 10:02 PM CDT
Kristan is having a really good day today and if I did not know her brother and sister were so sick, coughing their heads off I would not even be worried about her. Or how crummy I feel. She is handling this cold better than any of us in the house, but it may be that she just hasn't really gotten it yet. We will see, but I would like to think she has had it but had such an awesome immune system, given to her by her terrific brother Logan, that she just fought it off.

The other two, Morgan and Logan, have been so good about not getting in her face and coughing in their arms not hands,(so they don't spread germs), and lots of handwashing. Amazing how this handwashing helps. Before we ever went through this ordeal, of course we washed our hands, but now it's on a different level~like constantly. We were taught this from the nurses in the bmt unit. Years ago they had to enter the bmt room with gowns and mask and all sorts of protective measures were taken to keep the risk of infection down, until they learned that good ol' hand washing does the trick. So this proves how beneficial it is.

I want to thank all of you for keeping us in your prayers. I am hoping Kristan does not get this terrible cough that everyone else has. I think this will make me so nervous, even though I know she will get sick at point or other. Our dr. has told us this, but I was just hoping she was going to be superbaby! SHE WILL ALWAYS BE SUPERBABY IN MY BOOK!

Friday, April 4, 2003 7:39 PM CST
Hello, all. I probably shouldn't be on here right now because there is a storm brewing out there but, it is the first time Kristan has laid down today and there are new Scooby Doo's on so the other two are quiet as well(can't pass up this oppurtunity!).

We went back to the doctor today and she still thinks this is just a cold, no infection in the ears which is why we returned. With her fussiness I wanted to make sure it wasn't going to her ears. She still isn't feeling good but atleast no fevers! Yeh! So we will continue to treat this as a cold or virus and see how it goes. I did notice as I looked in her mouth today that she is cutting six teeth at one time. OUCH! This could explain some of this crankiness, poor baby.

Our nurse at Children's is so wonderful, as she returned my phone call after a very busy, hectic day and still managed to be so patient with my concerns. Since Kristan is cmv possitive, it really concerns me that this could come back and if not caught early enough could be very serious. Now if her immune system is doing what it should we will not have to worry, given the fact that normal ones can fight this off. Another, we will have to wait and see, but I did feel better after speaking with her, they had done a test the last time we were there a few weeks ago and it was negative.

We still have not heard anything on her engraftment, I'm almost scared to ask. But at the same time I'm dying to know! I am still praying for 100%! Please, Please, Please!

We are under tornado watches around here, then cold weather tomorrow; no wonder we are sick around here. Nasty weather.
It was nice to see that my other two are having pretty good immune systems and have fought off these last couple viruses. I always pay attetion to how Logan, her donor, is handling what illness he gets, thinking to myself if Kristan gets this and she has his immune system... Kinda makes you wonder if she will react the same.

Thank you all for signing our guestbook and sending me e-mail, I really enjoy all of it! It helps me know there are still people out there praying for my Kristan Grace. Thank You!

Thursday, April 3, 2003 9:52 PM CST
Kristan's fever has stayed away today but, she developed a cough. Uugh! We like coughs as much as we like fever! Yuck! She is very irritable to say the least. I just do not do well with this being sick thing. You would think as much as we have been through we could handle a common cold. It's just so scary because I do not want it to turn to pneumonia or something along this line. It's also scary because Kristan was born without an immune system (no nk cells), which in a miracle itself she made it as long as she did without being really sick. She had rsv at 3mo. and stayed in the hospital, not fun. This was before we knew her diagnosis. Other than this she has been healthy besides the cmv then hlh. Which to me is enough sick to last a life time times 1,000. Anyway now she does have her brother's immune system and she has nk cells, so I guess it's time to put it to a test. A test I hope she passes with flying colors! If she is still as cranky tomorrow I will have her looked at again, better safe than sorry. And I do not want to wait until off hours and have to go to e.r. unless it was an emergency, because I'm sure she would pick up a few new things along with what she has. We're still praying for this to pass and for her to start feeling better. I thought all these colds and flu were gone! We are thinking about climbing back into our bubble for a while longer! HAHA!

KRISTAN'S STORY

Wednesday, April 2, 2003 5:55 PM CST
Kristan has gotten her first fever since transplant 6 mo. ago, and of course I am a nervous wreck. The highest it has gotten so far was 100.6 which I know is hardly anything but given the circumstances: We hate fever! Everyone in the house had some kind of virus and she has been the last one to get it, I was hoping she would have escaped it.

When her fever persisted today I took her in and had her looked at. This was the first time going to our ped. office, we had been going to Children's until we were released Friday. Kristan's primary dr. was out, so we saw someone else. They checked in with Children's and did a cbc. The dr. thinks she is beginning a cold, leave it to me to catch it before symptoms begin(haha!). She did have a little stuffy nose and has been irritable, other than that just the fever. Did I mention how I hate fever?!

Anyone in our circumstances could relate; Is it disease coming back? Is it a new dx, cancer caused by the treatment she indured? Or just a cold that could turn in to something ugly like pneumonia? Do you understand the panic? I'm praying for a simple virus that she fights off.

By the way her cbc was great: wbc-8.9, hemoglobin-10.4,plts.-117, and her anc was really high most likely due to the fact of her trying to fight this off.

Please pray that she feels better and this aweful fever goes away!

Friday, March 28, 2003 4:42 PM CST
WOW! I AM NUMBER 7047, TO SHOW HOW MANY HAVE VISITED OUR SITE! THAT'S A LOT SINCE JAN. WHEN WE BEGAN THE SITE. THANK YOU ALL FOR YOUR CONCERN AND CONTINUAL SUPPORT! I LOVE SHARING OUR MIRACLE STORY AND THANKS TO THE HADDOCK'S WHO INTRODUCED US TO SUCH AN IDEA OF CARINGBRIDGE.

Kristan had her surgery today and BROVIAC is gone. I thought about asking to keep it to put in a scrapbook, JUST KIDDING, I would not even care to see it actually. But it is very strange to see her without it. Logan said he thought it felt like a dream (I think this means it is hard to believe it is real). I feel the same way!

She did great with the surgery but the before hand was the tricky part, the no eating after midnight. I feed her at 11:00p.m., then she woke up, at what I thought was 1:45, screaming. I walked her, tried to give her water, which she could have but didn't want, and tried all things possible as I look up at he clock in the kitchen. It reads 11:57. So I guess I looked at it wrong and it was really only 11:45 before, needless to say I said a Thank you to God and fed her. So my pay back for this little episode was, she woke up every hour and we had no sleep. I guess I deserved that after what I had done. But as I said the surgery went great.

When they brought her back to me she had an i.v. in her hand and did not like it. I bet she was thinking, "O.k. they took it out of my chest and put it in my arm." Poor baby, you wonder what they are thinking. Like the first time we went to Wal-Mart, a couple days ago(on off peak time~early~only early birds out). She looked at everything in amazement and probably wondered WHY haven't I taken her here sooner. She loved it! You can tell we don't get out much.

All in all we had a good day and the surgeon was wonderful, I think he's done this a time or two before. HAHA! He was just new to the hospital as we suspected. For anyone who goes to Children's and wishes they could park on the second floor, a bit of advice; Just get there at 6:00 a.m., this is all you have to do. HAHA! We have never until today been able to get such a parking spot, now we know the secret.

I am in the process of adding new photos, so if they are not up now please check back later because they are the latest and you can see how much better she is looking. Thank you God for this true miracle!

Thursday, March 27, 2003 8:08 PM CST
O.K. THIS IS IT, TOMORROW WE REMOVE THE BROVIAC, THAT SHE HAS HAD FOR 10 MONTHS. NOT A DAY TOO SOON, IT'S STARTING TO GET RED. UUGH! I HOPE IT IS NOT INFECTED! TO MAKE A LONG STORY SHORT I HAVE HAD TO CHANGE THE DRESSING ALOT MORE OFTEN THAN NORMAL AND SHE BEEN GETTING RED AND RASHY UNDER IT, SHE HAS NEVER HAD ANY PROBLEMS IN THE PAST UNTIL DAYS BEFORE REMOVAL.

We have to be there at 6:15 a.m., which means leaving at 4:00 a.m., which means nothing to eat after midnight. This will be a little hard to explain to a child who is still use to eating during the night. Some how I'm sure we will manage.
I am a little nervous since it is surgery, and our doctor told us this surgeon was new. Hopefully not so new that we are his first surgery performed.(o.k. now I'm scared) Can you immagine? I'm sure he's just new to the hospital and I know if he wasn't good he would not be there at Children's.

We tried to go to church this morning after I dropped Morgan off at school. It was the first time we ever sat in front in church, usually we have stayed in the cry room. After today's experience with a 17 mo. old who is not used to being quiet in church we may take up permanent residencey in the cry room to say the least. She was wild, most likely due to the awesome hemoglobin she now has, the highest in her life. Here's how our adventuer went; First she grabs the pew in front of her, throws herself back and forth as she yells then growls(for some reason). I try to give her cheerios that she grabs and throws in the floor followed by her sippy that she splashes in her face then laughs so loud I think it echoed. As I'm trying to carefully and quietly as possible head for the back as she grabs the prayer books and they hit the floor. I felt like I was on candid camrea or something. Then to top it off for the grand finally, I look at Logan and whisper lets go to the cry room, and as I get to the back of church I turn and no Logan, he's organizing and straightening the books (he's a perfectionist by the way) so I give him a look to come on. So he decides to RUN, stomping as loud as he can all the way out. I was so embarrassed, but found this very comical later, as in hours later. haha!

Please keep us in your prayers.

You can visit our new site at: KRISTAN'S STORY

Monday, March 24, 2003 9:56 PM CST
TODAY IS A VERY GOOD DAY! I WOULD COMPARE HOW HAPPY I AM TODAY TO THE DAY I FOUND OUT I WAS PREGNANT WITH KRISTAN (EXCITED THAT WE HAVE GOTTEN THIS FAR BUT STILL A LITTLE NERVOUS ABOUT WHAT THE FUTURE HOLDS). I JUST WANT TO SAY I HAVE NOT BEEN THIS HAPPY AND EXCITED IN OVER 10 MONTHS! THANK YOU GOD FOR THIS AND PRAYERS ANSWERED!

O.k. warning there is a lot of good news coming your way here and it may be a lot to handle at one time so you may want to sit down (o.k. I guess you are most likely sitting already), anyway here it goes:
COUNTS: wbc~(was4.4)~7.0! YEH! hemoglobin~(was10.2-10.3,being the highest ever recorded)~10.7! YEH! plt.(was 88,000)~101,000 YEH! ANC~3,100! This is only the beginning of the good news.~~~ FRIDAY SHE GETS THE BROVIAC REMOVED!!!!! After 10 months of having one in, since she was 7 mo. old, she will have it out. This is over half her life she has had it in. This would be like me having one in for... never mind, a long time.(haha!) After it is taken out we will not have to return for a visit for three months. We just went from every three weeks to every three months, wow! We can however have vna draw her blood once a mo. if we choose and right now I'm not sure what we will decide. ALSO, THERE WAS NO DISEASE IN THE MARROW!!!! AND HER RED CELLS THAT WERE STRESSED,(remember how we weren't sure what was going to happen with this and it COULD correct itself, or she may just have to go through life with a low hemoglobin, or worse she could have required transfusions) HAVE CORRECTED ITSELF!!!!THEY LOOKED PERFECTLY NORMAL. O.K. THIS IS MIRACLE NUMBER 501 THAT WE HAVE BEEN GIVEN. We are so thankful to God, I want to go out and tell the world how awesome He is, but for now I'll start with you all and work from there.

She now has all restrictions lifted and can go into stores now if we choose. Our dr. explained to us there is no true test to see how good her immune system is but through studys they have found that between 6 and 12 months after bmt they begin to have a good working immune system. So we will take it easy at first, no trips to Walmart on a Friday night around 5:00 p.m. or I doubt I take her to Chucky Cheese anytime real soon. And we will still, of course avoid sick people, but other than that we can start treating her like normal. What, by the way, is normal?

We will start going to our regular pediatrition if and when she gets sick, and after broviac is removed we can treat her fevers when she has one and not even have to take her in. This is unless she has a high one for over three days.

This is so much for me to take in, I am just overwhelmed with joy! Just so so happy! Thank you for your prayers.

I know so many times I go to other sites of children not doing so good and it truly breaks my heart and makes me want to do something to help them. I know from experience it helps to hear some encouraging words even if it is a "Thinking of you" little note, it means a lot. In our new site we have started I am adding some other links so anyone who likes to help please visit them and let them know you are praying for them. And anyone wanting to be added please e-mail me and I will add your link. I just started this so there are many more I am going to add. You all have been sent to me to help me through this very trying time. Know how special you all are to me. Please continue to send prayers our way. We will not know about the engraftment for a week or so, but we are hoping for 100%! Please also pray for Andrew, he went through transplant at the same time Kristan did, he is in the hospital. His family needs our prayers!

As we were getting ready to leave today from our appoitment Kristan looked up at her doctor and started kissing her lips together so he leaned over and she gave him a kiss on the cheek. It was priceless and a very good ending to this day. She was showing him her thankfulness for what a great dr. he has been.

You can visit our new site at: KRISTAN'S STORY

Thursday, March 20, 2003 11:38 AM CST
TOMORROW IS THE FIRST DAY OF SPRING! The weather is awesome, I'm so thankful of this. In 5 more days we will be 6 months out from bmt. Time has really went by fast (of course I say this now and would not have about 3 months ago, when we were counting everyday as it came). We still count the days but feel better about things since Kristan is looking so good to us. She is turning into a little toddler before our eyes, did I mention one with an attitude? Then again isn't that the defination of a toddler?(Haha!)

Logan , her brother, is sick and started running a temp. last night. This is the first fever that has been in our house since diagnosis (in June) and it's very scary. Scary due to the fact this disease is genetic, that it usually starts with a fever, that he has a 25% chance of having it, that he's the one that gave Kristan her new marrow. Don't want to go there! I knew I would feel this way when they had fever for the first few times(o.k. maybe the first 100 times~haha!)

We go to clinic Monday for her 6 mo. b.m. aspiration. We need prayers that we get good results! We're doing the procedure upstairs this time, versus more of a knock out down stairs, so I'm also very nervous about this as well.

We have felt like we have lived in our own little world for such a while now since diagnosis that this America at War has really gave us a slap back into reality to this world around us. I am overwhelmed with admiration to the soldiers going to fight for us, their strength and courage is undefeatable.

Please visit Kristan at her new web-site, just click on Kristan's Story. Thank you!
KRISTAN'S STORY

Thursday, March 20, 2003 11:38 AM CST
TOMORROW IS THE FIRST DAY OF SPRING! The weather is awesome, I'm so thankful of this. In 5 more days we will be 6 months out from bmt. Time has really went by fast (of course I say this now and would not have about 3 months ago, when we were counting everyday as it came). We still count the days but feel better about things since Kristan is looking so good to us. She is turning into a little toddler before our eyes, did I mention one with an attitude? Then again isn't that the defination of a toddler?(Haha!)

Logan , her brother, is sick and started running a temp. last night. This is the first fever that has been in our house since diagnosis (in June) and it's very scary. Scary due to the fact this disease is genetic, that it usually starts with a fever, that he has a 25% chance of having it, that he's the one that gave Kristan her new marrow. Don't want to go there! I knew I would feel this way when they had fever for the first few times(o.k. maybe the first 100 times~haha!)

We go to clinic Monday for her 6 mo. b.m. aspiration. We need prayers that we get good results! We're doing the procedure upstairs this time, versus more of a knock out down stairs, so I'm also very nervous about this as well.

We have felt like we have lived in our own little world for such a while now since diagnosis that this America at War has really gave us a slap back into reality to this world around us. I am overwhelmed with admiration to the soldiers going to fight for us, their strength and courage is undefeatable.

Please visit Kristan at her new web-site, just click on Kristan's Story. Thank you!
KRISTAN'S STORY

Monday, March 17, 2003 5:03 PM CST
We had lab draws today and all is good. Yeh! I love updating when there is actually good news and I hope and pray it continues. Here it goes: wbc (was*3.3)~4.4!, hemoglobin (was*9.9)~10.2, plt. (was*76,000?)~88,000! Anc~1425, I would have rather seen it above 1,500, but we'll take it.

Although these are really good numbers and they are continualy rising, her liver enzymes are doing the same. Not what we want. There are different reasons for them to rise, none of which I like. Gvhd, liver damage due to bmt,etc., medications~she's on none, viruses or infections~she has none of which we know about. The one thing that does make me feel better is that a father of a boy who went through bmt for this same disease said his son took a whole year for his enzymes to reach normal. But then again his son did have gvhd, we'll just have to wait and see and pray.

On another good note, I consider some very good news is that Kristan can now tolerate dairy! Yeh! That means the first time in over a year her and I can enjoy icecream, pizza, not to mention all the mexican dishes we love! I'm happy because this means more calcium for her bones. Not to mention no more reading every label as you grocery shop. Life is getting closer to normal everyday. Yeh!

On the sick note, Morgan missed two days of school then was fine. Logan had it a little longer but is now great. I unfortunately had to go in and get antibiotics for the worse sore throat I have ever seen, but I'm fine today. I'm just sitting on pins and needles waiting and hoping Kristan does not get it.

The weather has been so nice and we have been out almost everyday, it feels like spring! It feels like freedom! After not being able to go anywhere it feels awesome!

WE HAVE JUST CREATED A NEW WEB SITE, WITH THE HELP OF MY DEAR BROTHER, TO TELL KRISTAN'S STORY, TO GIVE MORE INFO. ON KRISTAN'S DISEASE, AND TO ADD MORE LINKS TO FAMILIES THAT NEED OUR PRAYERS. YOU ARE MORE THAN WELCOME TO VISIT IT, JUST KEEP IN MIND IT IS NOT COMPLETED AND HAS ALOT MORE WORK TO BE DONE ON IT. http://www.kristan.sonburntbytua,com

~~~Thank you all for your continual support and visithg us here. As one mom said it is our window, from having to be "secluded" from the outside world. It is very nice to read our guestbook and all the e-mails!~~~

Friday, March 14, 2003 9:06 PM CST
I WANTED TO THANK EACH AND EVERYONE OF YOU FOR VISITING KRISTAN'S SITE. SINCE WE WERE ON T.V. YESTERDAY WE HAVE RECEIVED ALOT OF E-MAILS, PHONE CALLS, AND SIGNINGS IN THE GUESTBOOK. THANK YOU ALL FOR THE SUPPORT YOU HAVE GIVEN US, IT MEANS SO MUCH TO US.

~~~ WE ARE IN THE PROCESS OF CREATING A NEW WEB-SITE WITH A LINK ON THIS PAGE TO GET THERE. THIS WILL MAKE IT EASIER TO FIND OUT MORE ABOUT HER DISEASE, SEE OUR TRANSPLANT JOURNAL, AND HAVE MORE PITURES ALONG WITH SOME OTHER THINGS.~~~

I JUST WANTED TO TAKE TIME TO THANK YOU ALL. PLEASE KEEP US IN YOUR PRAYERS. We have 3 sick people out of 5 in the house now, thankfully one's not Kristan. We hope to keep it this way!

Thursday, March 13, 2003 9:33 PM CST
Hello all. Today has been a pretty great day. Anyday my three children are well is a terrific day! They are finally feeling better. We watched our big debut today on the 5:00 news and I think it turned out really good, much better than I thought. I was just afraid that is was so much to tell in such a short time but I think Wendy and her camera man did an awesome job. The point they made was Kristan is a one in a million, which is how rare this disease is and we were fortunate enough to catch it in time. This was a miracle! I would have loved to have told them Kristan's doctor's name, but I would never do such with out approval first. He really deserves a noble prize of some sort because he was the only one who saw this disease at first. He pointed it out and we are so blessed for this. We really feel like God sent us a guardian angel to see us through. Our family has been given so many miracles. The day of diagnosis I left the room for a short time and went for a walk to the garage area of Children's, where you can see the cars go by from the bridge. I walked up and down that hall crying and praying so hard, I never looked up, I never looked at anyone passing, I was so scared, so into my praying and thinking it was as if the world completely stood still for a breif moment. I remember for the first time in my life I asked God to send me a sign, one that Kristan was going to be o.k. because I felt like my body was frozen with fear and would not be able to eat nor sleep nor possibly have the want to survive. I have never doubted my faith, it was nothing like this, I just needed a sign and I could go on. I prayed for this, "God please show me a sign, please!" As I finally open my eyes, and was standing on the bridge staring down the first thing I saw was a van driving by with a beautiful cross hanging from the rear veiw mirror. The cross was about six in. long and the sun shined straight on it. It looked like it was glowing and was so beautiful. I wiped the tears from my face, my family arrived there in the elevator. My sister, dad, and children came and I was strong enough to go back up to the room with them, not letting my other two children know how upset I was.

Wednesday, March 12, 2003 7:02 PM CST
I was right about the time we will be on the air at 5:00p.m.. The interveiw went fine, there was just so much to tell in such a short time. After they left I thought of so much more that I could have said, but I know they edit the story and I am sure it will be fine. I think it would take hours to go over everything we have been through in the last 6 mo.. It would take something like '60 Minutes' to fit it all in. Everything from diagnosis-the scare of what the future would hold and would she go into remision?, to transplant-all that this precious baby went through, to now-us having to be so careful with the germ exposure and what complications that can still arise. We didn't go into great details on how she did during the transplant and I would never want to scare anyone who was about to enbark on this adventure. But at the same time some want to know to be prepared, and the fact of even though she had such a rough time~~look at her now~~She is doing great now. Kristan had so many bad side effects from the chemo and the fact that her system was knocked down to nothing. She was so swollen even in her mouth. She had horrible mouth sores that would bleed and we were unable to stop this even with two transfusions of platelets a day. Her blood pressure got as low as 79/40 and up to 170/110 this along with her respirations reaching 120(normal~30-40) she required heart monitors on most days. Her heart rate got as high as 224 beats per min. and as low as 50 beats per minute (120~normal) causing them to observed her while she slept and woke her to breathe several times. She required blow by oxygen for a couple weeks, because she had so much fluid on her which they watched closely hoping it would not get in her lungs - she did have crakling in there several days but resolved itself. There were many days when her pain was not controled and this was the hardest thing of all to watch. If they didn't give her enough she was in pain, if they were to give her too much she would stop breathing, fine line there. She had an episode where she had a reaction to a med. and continually itched her face literally all day, only when she was sleeping was she not itching it was so miserble for her. She had lots of fevers some reaching 105, each time we would panic.~~~~~~I KNOW WE WERE GIVEN A TRUE MIRACLE SHE EVEN MADE IT THROUGH AND I THANK GOD EVERYDAY FOR THIS~~~ We at one point even thought the disease was returning. It was on her first birthday in the unit, but after 30 day bm aspirate it showed no disease. It went from the worse day of my life to the best within hours. I hope I did not depress anyone. I know I have not wrote about her transplant experience partly because of the memories, we had a rough 45 days. We are now at +167, and after this next aspiration if all is well maybe I can start to feel better. I don't think I can totally rest assured until one year out, because of fear of her losing engraftment, the disease possibly returning, on any of the other several complications that could arise at any moment. Even if I do still worry it only brings me closer to God and causes me to pray even more and I do believe she will be a long term survivor~~~THIS IS WHAT I PRAY!~~~

Tuesday, March 11, 2003 10:10 PM CST NOTICE: UPDATED PICTURES-MARCH10
THIS WILL BE QUITE BREIF, WE WILL BE DOING AN INTERVEIW WITH OUR LOCAL NEWS TEAM, FOR THE HEALTH SEGMENT IN THE MORNING. IT WILL NOT AIR UNTIL THURSDAY, SO IF ANYONE WANTS TO WATCH IT SHOULD BE ON THE 5:00 NEWS. IF ANYTHING CHANGES I WILL POST. Kristan is doing great today and is a little ball of energy, who wants to walk really bad yet is not strong enough or not balanced enough to accomplish this great feat yet. She has no fear, she just darts off from one peice of furniture to the other like a little streak of energy and has an attitude like, "If I fall I know my mom is right here to catch me!" I have to constantly hold on to her or she could really hurt herself; with her weak bones and low platelets, not a good combination for a toddler. She does have an attitude, if either of her siblings get near her she pinches or scratches them and waits for them to cry then looks sadly at them and gives them big hugs and kisses. I hope it's not linked to her whole experience when she would have to be stuck or other less comfortable things she has had done to her I would always grab her up after and hug and kiss her and tell her it will be o.k. now. O.k., she's already tramatized at only 16 mo. old, poor baby. I think it's just her little silly way she does things.~~I WANT TO THANK ALL OF YOU FOR VISITNG US, SIGNING OUR GUESTBOOK, AND PRAYING. YOU ARE AWESOME SUPPORT! DO YOU REALISE THAT? I WANT TO THANK MY TWO GIRLFRIENDS, MARSHA AND MISTI, FOR ALWAYS BEING THERE EITHER BY PHONE OR E-MAIL TO HEAR ME WHEN I HAVE CONCERNS AND NEED SOMEONE TO LEAN ON. YOU GUYS DO NOT KNOW HOW MUCH YOU DO, THANK YOU!~~ Sorry I thought this was going to be short, you should have known better.

Monday, March 10, 2003 3:14 PM CST NOTICE: UPDATED PICTURES-MARCH 10
Kristan had her blood drawn at home today by vna, we do this in between clinic visits. Her counts are in and they are fairly good. Of course I always wish for more, but we'll take it. Wbc was (down from 4.5) 3.3, hemoglobin (was 10.0) 9.9-not too shabby, and platelets were up a little from 72,000 to 77,000. So over all they aren't too bad, I was just a little surprised about the wbc decreasing and not sure what it means. Hopefully it does not mean that she could be losing graft. We will pray not! Her anc was still good at 1600, so I guess we will have to wait and see. I don't know anything about her liver enzymes since I was not the one who talked to the nurse who called her dad was and he didn't know to ask. Kristan's older sister, Morgan, came home from school early today with a headache and not feeling good, with a little stuffiness. I am very nervous about having a sickness in our house, this is the first time any of us has had anything since Kristan was diagnosed in June of last year. I consider that very good, but I knew it would strike sooner or later especially since she started back to school. When I went to pick her up at school the secretary told me she looked really pale, I know she does not know all the circumstances but to hear that another one of your children looks pale after having a child who had a fatal disease that is genetic is kinda scary. I had a sick lump in my throat and knot in my stomach. It is most likely that our other two children do not have this same disease Kristan had but it is not totally impossible since it is genetic. Most of the time you will not know they have it untill they contract a virus that can set it off. Sometimes I feel like we are sitting on a time bomb not sure if it will go off or not.~~I know God does not give us more than we can handle and believe me this is something I could not handle.~~ Morgan is very upset that she can not get in her little sissy's face and told me that she doesn't want to go back to school because she doesn't want to get sick because she can't hold her sister and give her close hugs and kisses. It has broken my heart, and makes me want to keep her home. To think she would give up something she likes this much to not endanger her sister is so thoughtful, she loves her sissy so much. We will see what happens. I am sure it is really strange to a seven year old to be sick after not being in 9 months. She was actually sick the same time Kristan was, so hopefully she has already had cmv. Cmv is what Kristan had prior to diagnosis and it could have triggered it. Please say extra prayers that Kristan will not get sick, but most important that she will fight it off if and when she does with her brand new immune system, one she never had; she was born without one.

Saturday, March 8, 2003 8:14 PM CST
The last few days have been so different around here, almost that "normal" we yearn for. We went from all 5 of us here everyday and not leaving the house except for clinic appoitments for the last 6 months, to daddy going back to work then Morgan beginning school. We actually even went outside today, her first adventure out since last Easter. She was truly amazed and you could see the thankfulness in her face as she smiled and laughed so much. I was nervous because of wondering what mold or germ or allergy she could be picking up. We also made a trip to Portageville for a whopping 20 minute visit. My grandpa is not doing so good and we have not seen them for close to a year. We just have not wanted to take any chances being exposed to more possible viruses, etc. Going from a house we try to keep germ free to the wonderful world of all sorts of germs it's kinda scary. O.k now that you all are thinking this lady is a little on the paranoid side; you have to be unfortunately. I am sure warm weather will be here soon so it will be easier to get together and visit outside with people without being in a closed area. Plus only two more weeks and she will have her bm aspirate and hopefully we will have good news and her immune system will be doing good, and no disease! I know this is a tall order, but with God all things are possible and I'm not giving up! As Kristan's Aunt Misti and I agree it is like each of our days feel like one big prayer that we never end (like we are constantly praying), one day we will finish with an amen. Please continue your wonderful prayers, I feel more strength each day and Kristan gains more strength each day. She has been such a long way, we are on day +163, which I can not believe. Time goes so fast and it makes me feel bad wanting this first year post transplant to hurry, because this will mean she will be two and I will look back with wonder as to where her "baby time" went. I will take each day and not miss any of it!

Thursday, March 6, 2003 6:36 PM CST
Today was Morgan's, my oldest daughter's, first day of school- first grade. How exciting! She loved it and it really made life feel a little on the normal side. We had been home schooling to avoid chicken pox, flu, etc. exposure while Kristan's counts were lower. I'm hoping and praying that most of the viruses have gone! I talked to our local news team ~KFVS~ on the phone today and they are going to do an interveiw with our family next Wednesday. This means little Kristan Grace will make her debut on television so all can learn about what a bone marrow transplant is and about the disease she had. Hopefully more people will sign up to be a donor and to give blood. There is a sad reality that 1 in every 330 children will be diagnosed with cancer. The "news person" has been trying to get us to meet with them since we came home from St. Louis but it always made me a little nervous letting "outside germs" in our house, along with the fact that it has taken this long for Kristan to feel a lot better in turn this makes us willing to want to share a good story. Tomorrow is Morgan's 7th Birthday and she is a little upset that she will not get the usual party with friends, but she understands and knows there are more in her future she will have. Logan's Birthday was the same day we took Kristan in to the ped. office and found out she had low counts and made us an appointment with Children's, June6, when this whole nightmare started. Needless to say he did not have much of a party either. Kristan's party was even worse, her first b-day was spent in the bmt unit. Anyway what I am getting at is Morgan's party will be wonderful because she will be with her loving family and I'm sure I can come up with some fun! I will have to let everyone know when we find out what time we will be on the air. Please continue to pray that Kristan will get a good report on her 6 mo. b.m. aspiration. We are praying she remains 100% engrafted! And that all her counts start getting in the normal range!

Wednesday, March 5, 2003 7:04 PM CST
I come tonight not to write about Kristan, she is doing fine, but to say my heart is very sad. We had met a very nice couple whose darling baby, 7 months old, was going through a bone marrow transplant for the same exact disease Kristan had. Baby Anna has passed away and is now in heaven, without any of the suffering her little body has been through. Please say special prayers for this loving family, so they will have strength and continual peace. We are there to support these families as they are struggling with disease, now is when they really need our support. Her link is at the bottom of my page if you want to leave them some encouraging words. Thank you! God bless you all!

Monday, March 3, 2003 9:25 PM CST
HELLO, TO ALL. WE ARE BACK FROM ST.LOUIS AND I MUST SAY I CAN NOT SEEM TO STOP SMILING. I'M SURE MY FACE WILL BE SORE TOMORROW SINCE IT IS NOT USE TO THIS. WE HAD A VERY GOOD REPORT! YEH!
First of all the blood counts are as follows, the ones inside the ( )'s are last weeks lads. wbc-(4.0) up to 4.5, patelets-(66,000) up to 72,00, HEMOGLOBIN-(9.0) Ready for this?! 10.0 The highest she has ever been her whole life is 10.3, (that was recorded). And this is the highest since transplant made on her own. This is really good news, and somthing else great is her weight is up to 21.0 pounds! And she grew another 1/2 inch,(29") maybe she'll be more than in the 5% range on her height. We also saw her ortho. d.r. and her bones are healing perfectly, no more cast! He said it would take two to three weeks and she would be back to where she was before accident. Little did he know he was talking about a baby, who never had such a hemoglobin - 10.0, that is bursting with energy and the will to succeed in anything put her way. I hope I did not throw so much good news out there that I overwhelmed anyone. (Haha) Our d.r. will see us back in three weeks, (this time-it has been every two) and it will be time for 6 month bone marrow aspiration to check on engraftment, to make sure no disease is there, and to take a look at her immune system. I know I will be so nervous because it sounds like a really big milestone, one I hope we hurdle. And he said if all is o.k. in the bones, guess what?! WE WILL REMOVE THE BROVIAC!!!!!!!!!!*** How awesome was it to just hear these precious words?!*** I could not begin to explain how excited, happy, over anxious we will be. Except of course when we return for a blood draw and little baby doll has to get stuck. I'm sure the time we will get to spend in the pool will make up for it, I hope anyway. While we were at clinic we were able to see Andrew, who went through transplant with Kristan, and he looked so good! This really made our day as well, because it was the best I had ever seen him look. Please continue to pray for Kristan, that she will keep getting better and for good results on that aspiration. We are almost to the half way point of being a year out. It really does not seem possible! In the next few days I am going to add Kristan's journal of her transplant, something I have not done yet. It brings back really sad memories because she had a really rough time in there. I want to add it to give others hope, even though she went through so much look at her now, what a long way we have came. I also wanted to mention she is now off Septra, which means she takes absolutely no medication, unless you count tums (for calcium). When she came home from transplant she was taking-Septra, pepcid, steroids, gancyclovir, fluids, Norvasc, cyclosporine. I'm sure I am forgetting some, anyway my point is WOW! No meds. Whats a mom to do? I GUESS KEEP SMILING, THAT'S WHAT!

Sunday, March 2, 2003 12:43 AM CST
A BUTTERFLY'S STRUGGLE
A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly.
He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings.It was never able to fly.
What the man in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon.Sometimes struggles are exactly what we need in our life.
If God allowed us to go through all our life without any obstacles, that would cripple us.We would not be as strong as what we could have been. Not only that, we could never fly.
I FEEL THIS STORY IS SO TRUE AND IT MAKES ME THINK OF KRISTAN'S STORY, HER STRUGGLE. IT TO ME COMPARES TO HER TRANSPLAT, HOW HER DISEASED MARROW WAS DESTROYED, HER COCOON WAS THE MANY PRAYERS WE WRAPPED HER IN, AND SHE IS A LIKE A BEAUTIFUL BUTTERFLY, WHICH IS A SYMBOL OF NEW LIFE.

Thursday, February 27, 2003 5:51 PM CST
Kristan is feeling much better today, and had a much more restful night. She had a lot of stomach upset (along with gi problems) because of our little "dairy diet challenge", which I may add, "Never again!" Rice milk and toffuti ice cream are now part of the grocery list each time. At least I know this is what was causing her problems, and not just my suspision.
We got a call from the school today, Morgan's principal was wondering if she would want to join them this last quarter. We have been homeschooling her just as an extra precation since she has never had chicken pox nor Kristan. Since hopefully chickenpox have already went around and flu and cold season seems to be slowly going away, her dad and I have decided to send her. I admit I am a little nervous, and feel safer in this little germ-free bubble, our home, I have kept them in. In all reality I know our lives need to begin some normalcy. I am also sure she will share with the students all she has learned about germs, and I am sure she will make sure no one forgets to wash their hands, they only cough into their arms not hands as they can spread germs, or puts their fingers in their mouth. HAHA! She's a very catious, concerned, soon to be 7 year old, and I love her! This is a special B-day for us because most of what I have read about the disease Kristan had is it is usually considered familial hlh if it is in a child 6years and younger, but more common under two. That is why I am so happy she is turning seven. I used to cry because this would mean she was growing up faster, but anymore, I am so thamkful for each and every Birhtday my children are given! Better yet I am so thankful for each day I am given with them!

Wednesday, February 26, 2003 5:27 PM CST
Kristan has been a little grouchy bug today and will not let mommy put her down. She was awake every hour last night. I thinking it's the teeth, rather hoping so. I did put a call in to St. Louis because last night her leg would "twitch" uncontrollably a few different times then stop, very short duration. Also Kristan has been sweating each time I nurse her or am holing her and she sleeps on me, but not if she is lying in bed. I know this doesn't sound like a real emergency and I'm sure it is not but I had to let them know just in case. The muscle twitching her d.r. had already warned us about as a possibility due to the bone strengthener she got, but I was unsure if there was anything we should do, the nurse said as long as it stops it should be fine. As far as the sweating goes she said she should be fine until we see them Mon. unless it gets worse. My fear would be the cmv trying to come back since she has done this in the past with cmv. While I was on the phone with her I asked her about her liver enzymes and she said it looks like they are coming down some. Awe some, I'll take it! Kristan was sitting on a step today and stood up and took several steps before I grabbed her. I can not wait for them to take the cast off, we go Mon. after clinic, where she will get the four hour infusion again, so busy long day! I did not know if I would ever get to see the day that she would walk, tears feel in my eyes at the thought of it. Thank you God! Thank you for her health today , her strength, her courage, please bless me with the same, so I can keep up!

Monday, February 24, 2003 5:20 PM CST
We did not brave the snow covered roads today, since we had 4-5" and they looked very slick at 6:30a.m., when we usually head out for the adventure. Instead a very nice soul (vna nurse) came to our warm cozy home instead and drew blood. I must admit it was a little easier than entertaining someone on a 2 hr. car trip, walking really quickly down the germ infested hallways(I don't mean this rudely), and try pushing the buttons on the elevator with an elbow or something other than my hand that will later catch her mask that she will try to throw off, then hold our breath and hope no one gets on with us that is sick. She usually does great on the way there but is tired of it on the way home. ~~~~Anyway here's the labs--wbc-4.0(normal 6-10), platelets-66,000(150,000-450,000), and last but not least hemoglobin(the one that I hold my breath on each time, because in case of this anemia she may have and if it is resolving) was 9.1 YEH!!! (normal is 11.0-14.0) But as long as it does not go down we will take it, and last time it was 9.0! Her anc. was 1,900 which is good, but her wbc. was down from 5.0 and the platelets down from 99,000, but our nurse who I talked to on the phone said,"The d.r. has seen them and he is happy so you should be too." So I asked what about the decrease in platelets, again she repeated what he said (she is so funny, she knew I would freak out so she made sure she spoke to him before she called). So since I did not get to ask the usual fifty million questions I usually I do, since we did not go in today, I'm not sure if this is a common thing or not to happen, but she did assure me it was nothing to worry about now. Of course I was thinking to myself "So you are really saying this could be something I could have to worry about later?" I know I'm really quite a worrier but, you know, when you have for about 9 months it would feel really strange not to. Her and I both have done without dairy for some time now and her "gi problems" are improved 100%, so I have decided to be on the brave side and do a challenge with her diet and added spaghetti-o's, the reason being I know she needs the extra calcium, etc. It has only a wee little bit of milk in them, but I believe she is trying to break out in a faint excema rash on her arm before my very eyes. I'm not sure if this is even possible this quick but you know what? I think I'll stick to the milk-free diet a little longer. She has never been formally diagnosed with a milk allergy but from an elimination diet this is what we have found to influence the output on the, you know, the out put she gives me in her diapey. I was trying not to gross anyone out! Sorry all you who have not experienced the joys of changing one. Kristan is still feeling great and looking just terrific to me, she can say 45 different words, she's crawling and would most likely be walking if she had not broke her leg. She is only taking one med. which is oral(septra) three days a week, so over all since she did not have a check up today, and didn't have her d.r. say how she's doing, I'll say, "She looks good!"

Sunday, February 23, 2003 6:27 PM CST
I was going to wait and write tomorrow after our clinc visit, but the way the weather report looks, I'm not sure we will make it (5-7inches).The flakes are so big and so beautiful, maybe they will stay off the roads? I'm sure if it's not too bad for the vna nurse to come she will probably come draw labs and we will have to go another day. This is not something I want to have to do since our d.r. is there on Mondays only. Do not get me wrong there are other d.r.s there that are very good, but we are just very comfortable with ours. When your child has had a life threatning illness, it's not like going in for a routine check up where you usually don't care too much who peaks in their ears. I remember a time when I would cry when my oldest got her immunization shots, o.k. after broviac surgery, chemo, bmt- that pretty much kills them then they are given some marrow and slowly brought back to life, it starts to put things in a little different prospective. But then again when Kristan gets her shots after a year out I believe I will also cry then, because it will be pretty scary! I must say I am not the same person I was 7 years ago when my first one was born. Never did I think I could of made it through the events we have been through, never would I had noticed the checker at McDonalds touching her face then our straws, or the lady at the grocery store licking her finger to open the bag before she put my groceries in there( I must admit that one gagged me), and never would I had thought about buying stock in Germ X. The last time we went to clinic and my other children had to go one time, Logan (4yrs.) kept telling us he was hungry so we told him we were leaving soon and would go by McDonalds. He kept insisting and said,"You can go down to the bacteria." He meant cafateria, I was thinking well there could be bacteria there. It was so funny and only a child who hears these terms used alot would think of this (haha). My 6 yr. old uses words like broviac, cyclosporine, bone marrow aspiration, ask me to open the blinds so we can get some vitamin D, says things like "mommy he touched his sock then he will touch that toy that Kristan may get." Anyway my children crack me up with this sort of thing, but who knows they may grow up to be a hemotologist oncologist or someone along this line. We all went to church today and sat in the cry room, it was so nice! We were even brave enough to go to communion in the front, where you had to walk up the isle. We felt like all eyes were on us, but there didn't seem to be a whole lot of people there, and we didn't think it was any different than spending time in the e.r. with all sick people. It was my first time to walk up in the front of church in over 9 months, so I lost it as I walked back as tears streamed down my face. To see Jesus up there on the cross it made the sufferings that we go through seem so small. To think of His Mother and how much pain and sorrow she felt seeing Her Son suffer, and thinking of how I felt watching Kristan go through this whole experience (the poking before the broviac was placed, the side effects to the chemo, the mouth sores, etc.) was so overwhelming and very touching. I was sad at this, but at the same time so very happy at Kristan's second chance at life and how we are all promised that "second chance" or the chance of eternal life. Kristan is feeling pretty good today but has been on the cranky side, of course there are three teeth trying to come through, hopefully this is all it is. God bless you all, please pray for good test results and the anemia to start resolving itself. **Sorry so lengthy!**

Friday, February 21, 2003 10:22 PM CST
Today has been a good day, everyday I wake up and see that Kristan looks good and feels good is a GOOD day. Along with the fact that I am so grateful to God to have one more day together with my family. As you all know Dennis had lost his job because of all the time he had to take off for in being there for our baby during transplant, also even though we appealed it he also was denied unemployment. Most people would freak out at this point, but actually we remained very calm and knew God would see us through, as He always does. And He has, Dennis is now employed! Yeh! I must say it is a little more stress lifted off of us. Of course now I have to turn back into supermom and take on all that was usually being shared. Actually it felt good getting a routine going again, I think we were falling into a rut where it kinda felt like you were on a very extended vacation ( a vacation I hope to never take again) and it was hard to get motivation going. Does that make any since? Today we (Dennis and I) left all three children and just ran around shopping, errands, etc. Does this not sound like a very big deal? It was for us because we have not went anywhere (just he and I) together, no children (besides a couple really quick trips while staying in St. Loius) in close to a year. I just haven't wanted to leave Kristan. She is finally doing good enough that I did not even worry while I was gone, of course we were only gone a few hours. While we were out we saw a very nice couple from our church, and it was so nice to see how caring they were. Thank you Mattie and Don. ***We go to clinic Monday and are praying for her counts to all start getting in the normal range. Go hemoglobin! Hopefully her liver enzymes will start going down, it is the one that really scares me. But since the d.r.is not worried why should we. O.k. I just talked myself out of that worry. Haha!***

Thursday, February 20, 2003 2:22 PM CST
Kristan is doing very good and is getting stronger each day(this of course is mommy talking not a d.r.). We go back to clinic Mon. for the usual blood draws and check up. Last time her liver enzymes were eleveted but not to the point of great concern. When anything is not of normal range, of course it is of great concern for the parents, though. Her skin is looking more normal to me and not as pale, unless it's my imagination since her hemoglobin was actually going up for the first time and not down. But over all she seems to be feeling good. I read a journal of a little boy's the other day and at this point where Kristan is now(the same amount of days out) they went to Disney world (okayed by the d.r.s). I can only daydream about reaching the point of going on vacation and pushing all the anxieties, the worries and the unknowns about the future aside and enjoying my family in a near normal setting. Taking in the beautiful sunshine, smelling the fresh air, and admiring God's beautiful world He created for us. Most importantly also seeing my children laugh and enjoy themselves. I can not wait! When we reach the 6 month out point and see what her bone marrow aspiration has to tell us and see what's going on with the anemia issue maybe things could possibly start to feel a little better. I hope I pray! I don't see how peolpe cope with years of treatment, only the grace of God helps them through. I never realised how many sick children are out there and untill my first trip to the oncology unit did not realise how many are affected by cancer. My first several visits I would leave crying just looking around and seeing their faces. We wonder what we could do to help? Giving blood or platelets is an awesome way, a beautiful gift. And to sign to be a bone marrow donor the ultimate gift. If my 4 yr. old can do it, we all could and help in saving a life, what a great gift you could give. Your prayers as well are a huge unselfish act of kindness. I know several times they have been low on the blood supply and we've had to wait long hours and in some cases this could be very bad, especially in the bmt unit, where the blood products were helping keep them alive and not start bleeding, etc. The Haddock's really need our prayers this week, I could not imagine. Anyone who has not read Grant's beautiful letter to God must, her link is at the bottom of this site. A father's love is so unbreakable, like God our Father's love for us! God bless you all, please hug your children extra tight and give them lots of love.

Tuesday, February 18, 2003 9:19 PM CST
We went to St. Louis today to Mo. Baptist to have Kristan's leg looked at. Children's arranged for us to go there instead. They said it was healing fine, but wanted to put a new cast on for a couple more weeks. The d.r. also said her bones looked a little osteopenic, from the chemo and steroids. So I'm a little more nervous about letting her try to walk, etc. But we now have a hot pink water proof one! It was the first time she's been in water in over three weeks and she loved it. After bath and lots of rubbing down massages with lotion she took a two hour nap(this is unheard of for her). I guess she was so relaxed bless her heart. Thank you all for visiting Kristan and signing her guest book, it means so much to us and shows such great support. It is so hard to deal with the worries day in and day out. This web site has been a real therapy for me, a way to keep a journal of all the events that have taken place, a way to keep everyone updated, and most important a support for my husband and I. (((((Thank you all!)))))

Monday, February 17, 2003 6:51 PM CST
Kristan had her labs drawn today and I was sure we were going to make a trip for blood, we even had the bag packed, waitng for them to call. Last week her hemoglobin was 8.6, the week before 8.4 and today it was 9.0! I could not believe my ears. It has been difficult to write today because heart has been very sad, because of the Haddock's devastating loss of their precious daughter. She was angel on earth and now has joined God in heaven. Instead of me writng more and taking up more of your time please take a moment now and say a prayer for her family to have strength in the days to come.

Sunday, February 16, 2003 10:09 AM CST
Kristan is looking very pale to me this weekend and I am very much looking forward to lab draws tomorrow to make sure all is o.k. with her hemoglobin. I've been very concerned this weekend that it may get too low and me not know when to take her in. Unfortunately we live 2 hours from Children's. She seems fine otherwise and her energy level is not always her indicator if it's getting too low, since last time at 7.1 she wanted to hold my hand and walk all over clinic(no one else was there besides med. staff), so I guess she wanted to check things out. We go to see the orthopedic surgeon Tuesday and we are hoping he will take the cast off if it is healed good enough, sometimes it can take 6 wks. and this would only be three. I'm lookong forward to giving her a bath in the water. I am really looking forward to the day the broviac will come out! There's been no mention of this yet, because I'm sure we need to see what's going to happen with this anemia issue, and if she was still needing transfusions regularly this would not be the best idea. I also dread getting the blood the old fashion way, a stick. We (myself and kids) did not go to church this morning since everything is so slick and it's freezing rain as I speak. We have been going, entering with a mask, and sitting in the cry room, which is enclosed with glass and a "do not enter, baby with low immune system inside", (it says something along this line.) Anyway everyone is very understanding and it's great to see everyone's smiling faces and be able to praise God in church. We are so thankful for this and to everyone there, so that we can be there as a family. After flu and cold season we will be able to join them up front. My other concern with Kristan, is that she's been sweating a little bit when she falls a sleep on me. I noticed this before diagnosis, and again now. I hope cmv is not trying to come back and I'm not sure if they are still testing her for this but hope so. This can be very bad in an immune supressed person. I will keep you posted after results tomorrow, please pray for good blood test results. Those of you who are not already praying for Alexandria and her family please do, she has pneumonia, and her uncle writes that she is in her last hours. My heart goes out to this family, they have been through so much!

Thursday, February 13, 2003 3:02 PM CST
Kristan is doing fine today and seems to have more energy than I do! I know there are a lot of our family and friends out there that know how much of a miracle Kristan has always been from the day she was conceived up to this point, but for some of you who do not know, I thought I would share, since we feel so bleesed and want to share how miracles still are happening here today and to give others hope! In Jan. of 2000 I had the first of three miscarriages that year, in March of the same year I had an ectopic pregnacy (in the tube) and had surgery to remove it, but saved the tube (thank God!), then in Oct. still the same year had another ectopic only this time in the other tube and had to have surgery and they had to take this tube. We were devastated and told there was a slim to no chance of ever getting pregnant much less have it end in a good pregnancy, since the tube had surgery on it, it upped the chance of another ectopic. By the way it is very dangerous to have this form of preg. and very very painful. Our d.r. knew how we wanted children and suggested invitro, but we declined and have always left it in God's hands even though we prayed hard to be given another gift from God, a new little life. The following year, Jan. of 2001, I got pregnant again and was scared to death. We didn't know if it was going to end in another miscarriage or not and if it was in the tube this time they would have to remove it and there would be no chance ever. After weeks of ultrasounds and the d.r. just about giving up hope on hearing a heartbeat, and sent us one last time to see, we finally saw one and was happy beyond belief! I will never forget that day! I had a lot of problems through out the whole thing and was on bed rest of and on for months (fun with a 3yr. and 5yr. old), then developed toxemia at the end. After a long and painful labor (the placenta would not deliver and had it manually removed) had a very beautiful special little girl! All these things that happened were all considered rare by the way, I guess it runs in the family! It took us 7 yrs. of trying to have Morgan, then I had a miscarriage the month before I conceived Logan. It makes me wonder had I not had that one would that child had been a 6 out of 6 match like he was. Sometimes the unanswered prayers are all part of God's plan as well. As you can all see we have been given so many miracles and feel so blessed! I just wanted to share this. This is what has gotten us this far: And whatever you ask in prayer,you will receive, if you have faith. Matt. 21:22 May God bless you all!

Monday, February 10, 2003 8:33 PM CST
Hello, all. We went to clinic today and recieved Kristan's first dose of the bone strengthening medicine (FOUR HOUR INFUSION!). Talk about a total body workout, trying to keep an active, 15 month old (cast on leg), who's learning to walk, and not letting her touch everything and put everything in her mouth(germ-reasons), confined in a small room 5 and 1/2 hours. Whew! Believe me I'm not complaining, I would rather see her acitve than just laying around, but mommy's a little tired. She did fine and had no immediate reactions, and was not expected to. They can come later, muscle twitching and possible seizure(which is very rare and hasn't been seen before by our d.r.). We have to give her three tums a day for a week, because all her calcium that's in her blood will be sucked out and put in her bones. Wow, how this human body amazes me! She is actually liking them (probably because she thinks it's something that she usually doesn't get, only mom), she's so sneaky. Whatever works! There's a little baby in the bmt unit that had the same disease as Kristan (can you believe it, as rare as this disease is?) and is doing good, but we should still keep baby Anna in our prayers because this is such a hard thing for any family to go through. All Kristan's blood counts were o.k.-plts.(99,000),wbc.(5.3),anc(1,700) and hemoglobin still hanging in there at 8.6! At least it hasn't dropped, just staying steady. So we're just going to watch it for now and pray really hard that it corrects itself. This would not only mean her brother's marrow kicked the bad guys butt(sorry)disease, but it also will hopefully correct this other congenital anemia (possibly if this is what she has). What a big job for a 4 year old's marrow! All I can say is when this child's hemoglobin ever gets to normal I'm not sure if I will be able to keep up with her. Everything else our d.r. had to say was all possitive and I always leave there with alot of confidence and hope, because of him. You don't have to worry about one stone being left unturned, or anything left undone, how great it is to feel this way when you're going through something like this. We like all the d.r.s out there, and probably shouldn't say this but if it weren't for him being ours I'm not sure how we would have made it through all this! Thank you all for all your prayers. Please also keep Andrew in them, he was in the unit with us and Alexandria, his disease has went back into remision, thank God, but he's battling gvhd and still needs our prayers. He and his mother were in clinic today and she brought this wonderful prayer book and Lourdes holy water, what an awesome gift. By the way she has been totally taken off cyclosporine, and her blood pressure medicine, I'm very nervous and excited. We'll just watch for any signs of gvhd.

Sunday, February 9, 2003 5:48 PM CST
I'll make it short and sweet, we go to clinic tomorrow and we hope and pray for good blood test results and a good check up! She seems to have a lot of energy today, could her hemoglobin be coming in? If so, I think I would be the happiest momma around! She's getting around good with her little cast and even crawling with it. I just started a scrapbook with her photos, this is something I just couldn't do for a long time, I'm not sure exactly why except that I cry my eyes out to look back, but with God's grace He helps us to look forward. I couldn't write in her baby book for sometime either, I guess I would think how hard it would be to look back if something was to happen, what I didn't realize untill I have met other families with sick children is to hold on to evrey memory and life is so precious. Thank you God for this day!

Thursday, February 6, 2003 10:14 AM CST
The snow is ((((so beautiful)))), and what a surprise I didn't even know it was calling for any. We go to clinic Monday to receive a bone strengthening drug to help her bones to be stronger, and she will receive this in a four hour i.v. infusion monthly for a while. I am still very nervous about this anemia issue, since her hemoglobin should have already came in by now. Each day she looks a little paler and it is frightening not knowing what her counts are but once a week, makes me worry about it just bottoming out. I know when we see her d.r. Monday he will probably be able to tell us something, but then again it may be one of those things where we have to just wait and see how she does, as far as if her hemoglobin can stay steady or if it's still dropping. Some people go through life with low hemoglobins, hopefully this will not be her case, since it makes her irritable, weak and tired. Along with other problems that can stem from this, heart problems, etc. I must say she does seem to have a lot more energy than any adult would have with this same number. She's cutting a mouth full of teeth, maybe this could explain the irritability. Also I wanted to mention that her rash is completely gone, it may have had something to do with the soy milk I was giving her since she seems to be doing better since I stopped it. Maybe some day I will get her figured out. ***I want to thank you all again for all the awesome guest book writings, they have really helped so much knowing there are people out there who care enough to check in and pray for our family. I ask God to bless you all!***

Tueday, February 4, 2003 10:18 AM CST
Hello everyone and thank you so much for the prayers, all the support you have showed us, and signing the guest book. We had lab draws yesterday and everything looked good except her hemoglobin is slowly going down (8.5). This makes us very nervous not knowing why. I hope and pray that it is just that all her counts have not come in good yet or if it is some form of anemia, that they will find out which and can treat it. She feels so much better and has much more strength when her hemoglobin is up, and is very irritable especially at night when it goes down. It is so hard having a baby in this cituation because they can not tell you where it hurts, and it breaks my heart. On the possitive, though, she will not remember any of this and I'm sure the mental stress would play a big toll on her recovery, atleast she does not have this. I spoke to her d.r. yesterday and they are going to give her a medicine by i.v. (a four hour infusion) to help strengthen her bones, he said this can be very tipical of a post bmt complication. We are also going to give her a multivitamin with calcium and vitamin D, and hopefully her bones can strengthen. I felt better after I talked to him, because to hear him say this can be a normal thing that can happen, seems to be more comforting than me using my imagination on all the possibilities. We think Kristan has a dairy allergy and now possibly soy. I breastfeed and when her and I go without dairy her g.i.symptoms have improved a lot. I had been giving her a little soy with her meals and since we stopped this she is a lot better. It's just really hard to find things we can both eat, but the worse part is not knowing if she is getting adequate nuitrition because of it. Plus it's hard to get her to gain the extra weight that she needs without the dairy (I must add it has not been hard for mommy to gain them, I don't understand!haha). Please pray hard that this anemia thing will resolve itself, that her leg will heal good, and for the continual recovery. By the way her leg doesn't seem to bother her other than she could crawl a lot better without the cast. I'm a little nervous to even let her crawl in case her bones would be so fragile that she doesn't need another fracture.

Thursday, January 30, 2003 at 11:36 AM (CST)
I JUST WANT TO SAY THANK YOU ALL FOR YOUR CONTINUAL SUPPORT AND PRAYERS and I apoligize for sounding so irritated yesterday. I shouldn't have sounded this way because everyone at this hospital down to each and every nurse has been so good to us and always goes the extra limlit for Kristan, especially the doctors, and her main nurse and doctor. They go beyond anything I could tell you and always know the right thing to do for her, so this takes alot of worry and concerns off of us. Kristan is feeling great today and acts like she never had the cast put on, and is even standing on it. Her grandad said "she's tough as nails" whatever this means. She's continually getting stronger each day, thank you God for this! And if she doesn't come down with any sickness after yesterday's adventure we'll definitely know how good her immune system is, hey maybe this was her test to see how good it's working so I won't be as parinoid. Please check out the "thank you note link below, I thought it was so cute, Kristan loves it and dances to it.

Wednesday, January 29, 2003 at 07:15 PM (CST)
O.K. JUST WHEN YOU THINK YOU CAN BREATHE A LITTLE, I ALMOST STARTED FEELING LIKE THINGS COULD POSSIBLY SOME HOW GET BACK TO NORMAL. WHEN LAST NIGHT LITTLE BABY DOLL WAS TAKING A FEW STEPS, SHE TWISTED HER LEG AND SCREAMED IN ESCRUCIATING PAIN. AFTER I FINALLY CALMED HER I REALIZED SHE HURT HER ANKLE AND AFTER A COUPLE PHONE CALLS DECIDED TO WAIT TILL THE A.M. AND SEE. WELL...To make a long story short she broke her leg and had a cast put on it. Two fractures (OUCH!). She's fine now and is in very little pain. But the worries begin, why did this happen, steroids? Another rare disease that the docs don't know about? Is she not getting enough calcium from the breastmilk? Or is it just a fluke? The d.r.s said it is not TOO unusual, let me guess there's 100 cases... Just kidding, but give me a break, better yet please give her a break. I'm sorry we just got home from a terrible day, we had to go to radiology with tons of sick people germs everywhere, then a trip down to the lovely germ invested E.R., where there were nowhere to sit unless you ask someone to sit their puke bucket in the floor, SORRY I DON'T THINK SO! I DIDN'T SIT ALL DAY! I know things could be worse and I know God has a plan. I'm just a little sad because she was finally interested and strong enough for the first time in her life to even try to walk or crawl. Maybe her bones were still a little weak. PEASE CONTINUE TO PRAY and please say an extra prayer for little Alexandria, she really needs one today.

Monday, January 27, 2003 at 05:55 PM (CST)
I JUST WANT TO SAY...***THANK YOU GOD!*** OUR PRAYERS HAVE BEEN ANSWERED AND KRISTAN IS 100%, YES, I SAID 100% ENGRAFTED! I WANT TO SHOUT IT FROM THE ROOF TOPS AND TELL EVERYONE WHAT WONDERFUL MIRAClES THIS FAMILY HAS RECEIVED! YOU GUYS ARE GREAT WITH ALL YOUR PRAYERS, FOR HE HAS HEARD, AND HE HAS ANSWERED! Kristan's disease is a little different from cancer, which I would I not choose to have either. At one point I had wished that it would of been "just" cancer, now I am so thankful it is not. The reason I once thought this is this disease is fatal within 2 months of onset, you begin chemo in hopes of remision only to follow with a bmt reguardless of remision or not. Also this is a genetic disease so not only was I told my sweet baby had this and had to hopefully make it to transplant, hopefully make it through and recover, but I also have to worry about someday will either of my other two be affected? This along with, I love children and would want to have 10 if God so willed, have to worry about the fact of another child to worry about being affected...there's a 25% chance that any sibling would have it. The doctors had told us that there were only 100 cases of this disease reported in THE WORLD and 50 cases were in Japan of these, o.k. that's pretty scary. I guess what they meant were survivors because I tried to do the math... One in 1.2 million are born with hlh, there are 5-7 billion people (I think) in the world, 30% are caught premortem (before it's too late), out of what is left only 20% are fhl (familial-born with; genetic), and of these there's a 60% cure rate. Anyway I came up with a little over 100, I think that is RARE no matter how you look at it, or how you do the math! With this disease as long as she #1) stays engrafted with brother's marrow, and #2) has nk cells, that even if the disease was to come back her new immune system would fight it off (hopefully-this is what we were told). She will be considered cured in two years versus five. So I guess neither this nor cancer either one would be pleasant to have and I pray for all the little children that have had to experience either. Please continue your prayers and your awesome support, this has helped so much! We still have to watch for gvhd, because she has a little rash, and we still have to worry about this anemia issue, but for today I'm going to push those ugly worries aside and PRAISE GOD and enjoy this day of thankfulness!

Saturday, January 25, 2003 at 12:46 PM (CST)
I want to begin by saying WOW! and THANK YOU! Thank you all who have visited this site and all of you with your kind words of support. You do not realize how much this helps when you are going through something like this. **A kind note from someone who you do not know, praying for your child!** HOW AWESOME! And all of you who do know Kristan also thank you for all your support as well! Also thank you Alexandria's mom Alison who put a link to her site. You have all made my day God bless you all! You probably noticed that I added some new photos. I really debated on rather to show the first one because she definately looked the worse that she had ever looked but, I just wanted to show what a difference she looked as she began her recovery (around two months out). This is my other daughter Morgan (almost 7 yrs.) and Logan her brother, her donor, her brave soldier hero (4 yrs.),who both love her so much. They have been so understanding, and it's been so hard for them, first of all I have kept Morgan out of school this year and am homeschooling as an extra precaution, since none of them have had chickenpox and this could be very dangerous on Kristan. Second I never take them in stores and they haven't got to play with many friends(because of the flu and spread of other viruses). I feel terrible for this, but I know and they know that it is not forever, only a short time out of our life. We can go this extra mile and hope we can prevent any unessacery illnesses. Hopefully she will stay engrafted and after 6 months they start lifting more limits. We'll post again Monday after clinic visit, please pray for good news on engraftments and good blood counts! We pray that her anemia will resolve itself also!

Thursday, January 23, 2003 at 11:37 PM (CST)
Not much happening this week, just cut two teeth, crawled for the first time, took three steps, learning a few new words, THAT'S ALL! Sounds like accomplishments to me! I'm not a proud mom or anything. It feels good to see these things (milestones) that at one point I didn't think I would ever see. It feels good to laugh, to look at her and day dream into the future when she has a mouth full of teeth and is running around, to NOT think about this aweful disease that she had or that could return. I can not let myself think of it coming back, I get too depressed and it's not fair to any of my children. I thank God for this day and look forward to the next. I remember a time in my life when I was so tired I couldn't wait to go to bed at night, now, yes I am tired but if it happens to be after midnight when I get in bed, who cares I think o.k. now we're on day +119 post bmt, like right now, it's midnight. I think they call this nervous energy! And even if Kristan still wakes to eat every two hrs.(if that long) who cares at least she's here with me and I know she's safe and snuggled close. And when she wakes up early I don't grouch and beg for more zzz I get up and look her over and see how she's feeling and THANK GOD FOR ONE MORE DAY! Too bad it had to take something like this to open my eyes and my heart! It makes me want to help anyone I can, because of so many people helping us. I feel like God sent us these people to show His love for us, how great that is that you all took part in that THANK YOU AND THANK YOU FOR YOUR PRAYERS. Pray for 100% engraftment, we go Mon. to find out.

Jan.19
Just a note to say we had labs drawn today and they were all good, which makes me very happy! Her hemoglobin was only down to 9.4 from 9.8 last week, her wbc was up to 5.9, from 5.3, and best of all her platelets were at an all time high of 84,000 for the first time since bmt. Anc (which is an indication of her immune system) was 3100! It makes me wonder how she could have an anemia with holding steady like this. I don't know, all I do know is life is good today and we will take that. Logan told us last night, "I'm going to pray tonight that baby sissy grows up." He was saying this because he can't wait until she's a little bigger and easier to play with but, when something like this comes out of their mouth, it amazes me. When Kristan first started getting sick back in June, one day Logan said, "Mom I'm sick and tired of Kristan." I told him this was not nice, that she was very sick and couldn't help it. Then he started crying and said, "No, mom I'm tired of her being sick." then he looks up as if looking up to heaven and said, "Dear God PLEASE help sissy not to be sick anymore!" I believe that God answered "Okay little fellow and I'm going to let you help me." It wasn't too long after we found out he was a perfect 6 out of 6 match. We haven't heard anything about engraftment results and are still praying for 100%!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, January 19, 2003 at 04:02 PM (CST)
I am sorry I have not updated in awhile but, fortunately things have been pretty uneventful. We like uneventful! We are now on day +115 post transplant and Kristan is doing fine other than alot of fussiness, hopefully just normal baby stuff. The fact that she has two top teeth that has been trying to come in since Sept., poor little thing, they don't like for you to give them tylenol in case it could mask a fever. After all she's been through cutting teeth is probably nothing but annoying. I think the cyclosporine(the anti-rejection) drug may have made her gums a little thicker than normal. I wanted to comment on why my husband has not went back to work, since a lot of people have been wondering. Dennis had talked to Purcell prior to leaving for St. Louis for the bmt, and had asked for a medical family leave of absence. They denied him this and said he has not been ther long enough, but when he comes back they would deffinately hire him back. When we returned, almost 100 days later, he called in and they told him they have filled his position. Dennis had to go because not only was this a life threatning circumstance but, we also have two other children to be cared for. Every one has been so supportive, so generous, so compassionate, that when we were told this Dennis and I both were blown away. Insurance will be a big deal now when starting a new job with a history like Kristan's, already up to a 300,000 dollar surgery so far, and not done yet! I'm sorry for unloading this, we are perfectly find and we did not let this ruin our Holidays thanks to a lot of family and friends(you who helped know what I'm talking about) made our Christmas so special, I definately learned to believe in santa this year! Christmas eve Logan informs me as I was tucking him in that he could not wait to get this certain batman he asked for and after I swallowed hard I said "I don't know if that was on your list." He assured me it was, he said he wrote it himself(o.k.-he's FOUR). The hospital adopts a family and sent us home with some wrapped gifts that I had no idea what they were(even though I was tempted to peak-HAHA), that morning guess what was in one of those gifts? That certain batman out of all the ones. Our church has helped so much too, through the holidays with donations and that has helped us along until Dennis can find a new job. We feel like maybe God has another plan for us and who knows he could have went back and brought home a virus that could of sent us back to the hospital. We have taken advantage of every minute we have to spend as a family, and I have decide not to worry about my other two children ever developing this aweful disease. They have a 1 in 4, or a 25% chance of having the same gene that caused Kristan's since hers is considered familial, and is genetic. I was constantly checking them for fever and petichia, but I've decided this is no way to live in fear, I'm just going to be thankful for each day I have and look forward to the next morning when I wake up and hear my sweet children's voices. This has really made me stop and appreciate all the little things. Thank you God for this!!!!!!!!!!!!! Please continue the prayers!!!!!!!

Thursday, January 16, 2003 at 06:23 PM (CST)
Today has been a pretty good day, actually I should call it an excellent one since I'm in my home and I have my loving family here with me. Kristan had a blood draw today and her counts are doing good, the blood transfusin gave her a little bump from 7.1 to 9.8, and when her hemoglobin gets much higher she'll be running through the house I'm sure, and I'm sure I won't be able to keep up. I would like to take this moment to thank each and everyone of you for all the prayers, I'm not sure where we would be without them. This whole experience has definately made me closer to God, for I pray day and night. I appologize if there is anyone who has not received a thank you from me, it got really hectic moving home after living in St. Louis for 3 monthes, we went through 2 different seasons so alot of unpaking to say the least, still this is no excuse, so please know that we thank everyone from the bottom of our hearts. Thank you too for signing the guest book I think it's going to help to know there are such caring people praying and checking up on her. A special thank you goes out to my mother and sister who is always there to care for our other two who have been shuffled back and forth over the last 7 monthes and while we make trips to St. Louis for clinic visits, couldn't have done it with out them! THANK YOU!!!!!!!

MY VERSION OF A BONE MARROW TRANSPLANT
A bone marrow transplant is a procedure in which a patient is put in an islolated room and given a conditioning regimen of different chemo's, then after days their immune system is nothing. Their WBC is less than .1 and they are supported on blood and platelet transfusions until they are given the new marrow and days later (12-15) it begins to slowly "kick-in" and begins to produce new cells. The process itself is given in the form of a transfusion. There can be numerous complications including: rejection of the marrow by the body, infection from having no immunities (even our own bodies have the kind of bacteria that can be dangerous), past viruses can reactivate, side effects from the large dose of chemo(short-term and long-term), and GVHD (in which the donor recognizes the body as forgein and start to attack).

This is in my own words what a BMT is. The first 100 days post-transplant are the most critical but, it can take up to 2 years before the immune system is functioning normally.

Kristan's history of the disease before BMT.
Kristan was diagnosed with (FHL) Familial Hemophagocytic Lymphohistiocytosis in June of 2002 at 7 1/2 months old. This is a rare disease that affects only 1 in 1.2 million people, but unfortunately only 30% are caught premortem (before it is too late). It was considered familial because of her age, usually there has to be family history. This we are unsure about except that my mother, in her twenties, had her spleen removed and was very ill. She had petichia all over and had alot of the same symptoms of this disease but, thirty years ago this was unheard of. My mother is still alive today and they had considered her disease ITP. Her grandmother lost 3 children at a very young age, under 2 yrs., in which my grandfather remembers them having seizures and fever, one died of pnuemonia. Whether this family history was coinsidence or something to it and maybe I was a carrier, I guess we'll never know. This disease is rapidly fatal if left untreated (median time 2 months from onset) but, if caught in time and given proper treatment there can be an eventual cure, through Bone Marrow Transplant. In May, Kristan began having fever off and on for a week and after a visit to our Ped. office we found out she also had low blood counts. The doctor sent labs off to the Mayo Clinic and she tested possitive for CMV, which could explain all Kristan's symptoms. Two weeks later her fevers began again on a Wed., Thurs. I was back in the office and she was examined again and her counts had dropped again. They had risen before this in the 2 week time period of no symptoms. The doctor said it could be a severe case of CMV but, lets send you to St. Louis for tests. By Sat. morning I knew something was not right; in fact Fri., I called St. Louis Children's myself begging them to see her sooner. I didn't realize I could of went on my own through ER. We went to ER at SE Hospital and the Dr. said her liver and spleen were very enlarged and her counts were low. We drove straight to St. Louis and prayed every breath of the way. Sunday morning she recieved her first blood transfusion. Her hemoglobin was 6.9 (normal 11-14), platelets were 29,000 (normal 150,000-450,000), and WBC was 1.3 (normal 5-10). She was very neutropenic which meant she was in alot of danger for infections, she was also swollen and very lethargic. It took the doctors days to make the diagnosis and one Dr. was the one who saw this disease, all the others missed it even the pathologists. She was put on antibiotics right away. The real miracle was that if we would have been sent the 2 weeks before when she indeed had CMV, they could of thought it was just a severe case of CMV and who knows from there what would of happened. The infectious disease people kept telling us "she's having all the same symptoms as a severe case of CMV."

We have came a long way from this day. Her brother, Logan,(the donor) was a perfect 6 out of 6 match and after 3 1/2 months of chemo she recieved her Bone Marrow Transplant-----September 26, 2002.

Tuesday, January 14, 2003 at 11:37 PM (CST)
Today was a very nerve wrecking day, we had to make a trip to St. Louis again this time for a blood fusion, her hgln. got down to 7.1 and they transfuse at 7. The nurse ask if we wanted to wait until tomorrow (I DON'T THINK SO ) to be polite. We prayed all the way there,I started saying the rosary twice, then was too distracted to concentrate. We were worried about this possible new diagnosis of anemia, or is it the disease coming back ( of course this crossed our minds, since her liver enzymes have been screwy lately. To make a long story short... Her d.r. came by,after he got off working in a reserch lab, and talked to us and answered a lot of our questions. I'm not sure what all he said (you know, d.r. talk) but I do feel better. #1. her hgln. up there was 7.6 not 7.1 even though he decided to go ahead with it, maybe it would make her feel better.#2. Her liver enzymes were on their way down some along with some other test (ferritin, trig.) these had a lot to do with her disease. And #3. BEST OF ALL He did a test on her nk cells (this is what she was born without no immune system,pretty much) and he found good activity, his exact words were her brother gave her one heck of an immune system. Thank you God!!!!!! Now we wait for the engraftment report and pray for 100% donor. By the way, Kristan took her first step today! What a little hemoglobin can do, even though, half way through they had to stop it because she started breaking out in hives. She's fine now, so maybe that was all she needed of it.

Monday, January 13, 2003 at 08:06 PM (CST)
Today we went to clinc and were hoping to get a good report, when all we got was a very confusing one. Kristan's hemoglobin dropped to 7.8 and we're going to watch it in case she needs a transfusion. The D.R. seems to think she has a rare anemia that I'm not even sure what he even called it, maybe something to do with a cytokine protein deficiency. He's only seen two cases. I asked if she does end up having this can it be life threatning? He said it can be, because it requires blood transfusions and I guess if you didn't get one in time it could be bad, if it bottomed out. Dennis and I are so overwhelmed, not only do we have to deal with the fact of her disease ever returning, we also have to worry about what reactions and side effects she could have from the chemo and the bmt, now we have another worry as to if she does indeed have this rare anemia. He plans to find someone to do the test for it or he may do it himself, it requires a skin biopsy and he would take it at the same time he does her next bm aspiration. That will be in a few monthes. We are now waiting on results of her engraftment and her nk cell activity and should find out this info. in the next week. Alot of waiting and praying, it is all we can do! We will never give up hope Kristan has taught us this, and God can continue to give us miracles. Her rash is better, and he seems to think it maybe ezcema,who knows. Her weight and height is up, which is good-she weighed 19.5lb.s and was 28 and 1/2 inches she is now on the chart at a whopping 5% on her height. Please pray!!!!!!!!!!!!!!!!!!!!!!!

Sunday, January 12, 2003 at 07:40 PM (CST)
Kristan is doing very good today, and she's getting stronger as well. Tomorrow we hope to get some good news on the bm aspriration, we are praying for 100% engraftment, they also will be drawing her blood to check for nk activity. This is the number one thing that will determine how she will do. We are on day +108 post transplant, the first 100 are the most critical for infections, gvhd, and other complications. The first 6 monthes are really the hardest because her new immune system is trying to kick in. It has been really hard to stay away from friends and family and the public in general to reduce the riskes. We have so many wonderful people praying for us,this is where we get our strength. Kristan has been down a hard road, but with God's grace he has gotten her this far. A very dear friend of mine, Paula, once told me FAITH is not knowing God can, but knowing God will! Kristan had a mild rash that began yesterday,I pray nothing becomes of it.

Sunday, January 12, 2003 at 07:30 PM (CST)
I begin this journal by telling Kristan's amasing story and will continue to update to keep people informed on her condition.

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----End of History----