Just...WOW

So as most of you guys know Connor never engrafted so he is currently going thru more chemo and will have another transplant on Monday. This week has been HELL plain and simple. He has been throwing up alot more, has gotten skinnier, and has gotten weaker in the last 2 days. His fever spiked at 104.4 today and stayed and 103.3 most of the day. The virus is gone and all the fever and stuff he is having now is from the Antibodies they are giving him to increase the chances of him engrafting. He is nauseated from the Chemo/Antibodies. He is wishing so bad that he was home. He has been talking alot about death and dying. It is killing me. I feel my heart tear a little bit everytime he mentions it. I have to let him talk openly about it though because it is something he is concerned about. I hope none of you ever have to hear your child tell you how they think they are dying. He told me last night that he wants to be a ghost when he dies so he can hide my glasses. I don't know how to answer him about this topic. So far I hold it together until I can get away from the room and then I just cry like a baby. I am so tired of hearing "Be Strong", "Keep The Faith", "God Has a Reason", "I Could Never Be As Strong As You", etc. I know that it is meant to be helpful but until you have been here watching your child getting thinner and appearing frailer by the day you have no right to tell me how I should Keep the freaking faith! While I am at it I quite frankly don't give a flying rat turd about God's reason either. What kind of reason can you come up with for a 9 year old child to be going thru hell and no one being able to tell him why he has to go thru it? I am not mad at you guys that tell me this stuff I am very glad that you are trying to be encouraging, but before you say things can you please think about how you would feel if you were watching your child go thru this. As far as me being strong...you have know idea how I fall apart when no one is around. I tell you everything is fine and that he is better. The reason I do this is because if I tell you the truth then you tell me for 20 minutes that I need to claim it and have faith! I love all of you guys, If you want to post you are praying, I am more than happy to hear it. If you want to post warm wishes and get well soons, that is great. What I want you guys to do more than anything is to just call and crack jokes and not even mention all this crap that is going on. Sometimes it is nice just to have that couple of moments where this can be pretend gone because no one is asking you every 5 minutes whats going on. If you want to know about Connor please call my Mom or Family to find out because I get tired of repeating it! If your child had a life threatening disease would you want to be reminded of it every 5 minutes when someone different called to ask how they were doing? Trust me it gets old. If I bring it up great, but if not please don't push. Please don't get offended I am just having a hard time dealing with never ending questioning and speeches. It is hard to keep the faith when you have all the facts in front of you. Remember we have been fighting this disease for almost 2 years! Doesn't sound like long until you really see what has happened in those 2 years countless hospitalizations, Chemo, chemo, chemo, radiation, 2 surgeries, hair loss, people staring, OH AND DID I MENTION PEOPLE STARING, septic shock, an ICU stay, Pneumonia, more Chemo, remission, relapse, allergic reaction, failed transplant, another transplant, another allergic reaction. Those are just the ones that came to mind right now that is not including everything else! I probably wouldn't even be saying anything but the week I have had has made it worse. My nerves are a wreck, I am worried to death about my son. I have to worry about if he is going to make it. I don't sleep (obviously I am on here writing this at 1 AM!). I want our lives back, I want Connor to be able to go to school, swim, and play with friends. If he catches a cold I want it to be not a big deal like it is for everyone else. I want him to have his normal life back. You see normal for me and Connor has changed. We will never be that carefree again. We will always have to worry. We will always have to take extra precautions. Our life has been totally changed. Please just keep that in mind the next time you see me. I love you guys and I don't want to hurt your feelings but I think it is better to tell you now so because I don't think I can hear anymore of this stuff. (((HUGS))), AMY

Rejected!?

Truth is we don't know yet. Hurry up........then wait. Connor still hasn't engrafted, which is scarier
by the day. He could be a late engraftment or he could be rejecting the transplant. There is either hope......or all is lost this time. If he is a late engraftment it will happpen in time. If the transplant didn't work we get to start over. That means more intense Chemo, more throwing up, diarrhea, more grouchiness, more mouth sores, less taste buds, less hair, and an even higher chance of secondary cancer. It seems the treatments are as toxic as the cancer. He is finally able to eat some, which makes me happy. He can finally taste, which makes him happy. He has lost tons of weight. He has no hair, eyebrows, or eyelashes. My God does his suffering never stop? They did a Bone Marrow Aspirate today to see if the Leukemia is back. They gave him Versed and Propofol to knock him out. Propofol!? Isn't that how Michael Jackson died? Dang worried the whole time he was under. Still waiting on test results, the wait seems to never end. Dr. Stine told us before we came down here that survival rates didn't matter. He was right. Either your child survives.....or they don't. It is either 100% or 0%. Folks there is really no cure for cancer. There are treatments but that is not the same. A cure means it is gone forever. Treatment means you are treating it, trying to control it. Thats why you see all the searches for a cure. Connor has been so sick, and the hard part is there is nothing I can do to fix it. He wants to be camping, fishing, and swimming. He deserves a normal childhood. I don't know how he will hold up if he has to do it all over. I know that I can't lose my son. Absolutley not, its not a possibilty. I feel like the air just got sucked out of my lungs for thinking about it. I know that is a very real possibility and it terrifies me to think that possibility is related to my son. My son the happy kid who talks trash, My son the happy kid that plays video games, that enjoys the outdoors, my snuggle bug, My one true joy in life. I pray to God that this dang transplant takes and that Connor's Journey is about to get alot easier. Notice I said easier not over. When the Journey is over it means the end, nothing worked. We definetly don't want the Journey to be over just please God make it easier. This is almost to much for this Mom to bear.

Its Gotta Get Worse Before It Gets Better, Right?

Connor came thru his transplant as expected, but now we have all these side effects of the radiation, chemo, transplant, and other drugs wrecking havoc on his little body. he has been running fever, which they say to some degree can be expected with transplant. He has mouth sores, throat sores, really he has sores all along his gastrointestinal tract from the Chemo and Radiation. This leaves him in excrutiating pain. They are now giving him Morphine to help manage the pain. Due to all the drugs and radiation in his body Connor is violently ill throwing up throughout the day, and has very watery stools. In fact he cant control his bowels right now and is constantly having accidents, even in his sleep. He is embarrassed by all of this. He doesn't even want me to see. His bottom is very sore and bleeding due to the loose stools. He is very lethargic, not even wanting to play his beloved video games most of the time. He is understandibly irritable right now. He is tired of having his body put through Hell. He can't eat, drink, or swallow. His mouth does not produce muccus and he has thick foamy stuff that he throwsup because of it. It is called muccusitis. It is very painful. He continues to push forward........striving to beat the Demon Disease Cancer at the hand it has delt him. He goes forward because he can't turn back. He goes forward because he knows his Mama is scared to death and wants to comfort her. He goes forward because he wants to beat the odds. He goes forward because there is no other options. Forward is the only way to go when your back is against the wall. Continue to pray for Connor as he continues to give it his all and Kick the Sickies out of his little body. Go Connor my Angel without wings......show Cancer you mean business.

New Fighter Cells In, Kicking Sickies Out!

Connor got his Bone Marrow Transplant Yesterday! We are so glad to get that behind us. He threw up nonstop, His nose wouldn't quit running, and was sneezing all the way thru it, but we got the Stem Cells in his little body! Time will only tell if he develops GVHD or if his body rejects the transplant, but we are standing on our faith that all will be well! He was running a fever earlier but it came down after about two hours. The day of Transplant is called Day Zero. He is starting new. His body has the immune system of a premature baby basically. Now he gets to celebrate two birthdays! This new one will be June 8th, they had him a birthday party and brought in presents for him. I think about it and realize it really is a second birthday. He got a new lease on life, brand new stem cells, his life really does start over that day. He is still very fragile, just like a newborn would be. We will celebrate this day every year in addition to the 20th of June (his original birthday) because he has a new life. God bless the families that gave their babies cord blood to save my son! I would give anything to meet them and to hug them and just let them know what their awesome gift has given our family! I would like to encourage everyone to donate cord blood if they are not planning on having it saved for their own babies. Those of us who can no longer have babies I would love for each and everyone of you to Be The Match for someone else and donate bone marrow. There are thousands of adults and children alike that die each year waiting for a match. I can't wait to get registered and pass the gift on to someone else! My Mom left today to go back to Oklahoma. I miss her so much, as does Connor. I have such an amazing Mom I hope to someday be the mother that she is. She has always sacrificed so much for us kids, never asking for anything along the way. I have been so blessed with such a wonderful loving family. They do so much to support us and one another. God Bless them and all of you guys who continue to pray for us!

MOM MADE IT!!

I am so happy my mom finally made it down here! I don't know what I would do without her! Me and Connor took her to El Mercado the open air mexican market down by the river walk. They were having a Memorial Day Celebration so we got to enjoy music, crafts, import items, and of course food! We ate some authentic food which I have missed so badly about being away from home! I miss my hubby so much, but we have a very strong and wonderful relationship so even though it hurts to be seperated during this I know we will still be going strong when I go home! Mom and Tavo are my strength thru all of this and it is nice to have one of them here. I have the greatest mom I could ever ask for. She got up at 4 this morning and drove straight thru to get here by this afternoon! I love her so much and am so greatful she was able to come down here for the transplant. It means so much. I have met so many families here going thru the same thing or that have just finished the transplant. It has helped me so much to talk to other people in the same situation as us. I am slowly accepting what I am being delt, it isn't easy but I can't let it get in the way of me supporting Connor. Anyways I have a long day ahead of me tomorrow so I guess I will have to cut this short, but you guys have a good night!

In Christ Alone

Thursday and Friday they will be doing Testicular Radiation which will leave Connor sterile. It breaks my heart, but not for myself, for him. I know that as a little girl I always dreamed of having kids and I know that when he gets older and starts dating that may be an issue. Is he going to hate me for not giving him a choice? I don't know. My primary goal is to keep him alive and not lose my baby. I knew before we got here he would end up sterile but the closer it gets to that particular radiation, the more I cry about it. It is so hard to accept! We have been lucky in so many ways. God has helped us, and sent wonderful people to help. Our church has helped alot with prayer and fundraisers. It just seems that when you are away from home it goes so fast. We flew down here so we have to pay for cabs to get around, and Lawdy is it expensive! Mom is coming down this weekend and it seems to be taking forever to get here! I miss her so bad! My mom and my husband have been there for me thru all the tough stuff and try to calm my ramblings and crazy nerves! I don't know if she can do it by herself without Tavo here! LOL! I miss my husband like crazy, he is such a great guy. He always wipes my tears and tries to make sure I rest and take care of myself. I couldn't do this without him. God blessed me with him! Dad has helped and offered to come down here, but when something is going on I want my Mom. When I'm sick I want my mommy, when I'm sad I want my mommy, when I have a question, etc. you guessed it I want my Mom! Not that I don't want Dad to come down, I love my Dad. Its just Mom is so understanding and even though she is upset she tries to talk me off the ledge. Thru all this stress and craziness I try to put my trust in God. Without him who knows where I would be and what would happen to Connor. I try so hard to have faith. I pray to God everyday because I know he can heal. I know that he can heal Connor and even the radiation won't affect his fertility! I love God! When Connor relapsed I hated God, but now I don't blame him. I trust him(most days!LOL) that its all gonna be OK. Which reminds me I wanted to share the lyrics to one of my favorite songs. Its one I listen to at least once daily. I wish I had the music for you!
Amy
Lyrics to In Christ Alone :
In Christ alone will I glory
Though I could pride myself in battles won
For I’ve been blessed beyond measure
And by His strength alone I’ll overcome
Oh, I could stop and count successes like diamonds in my hands
But those trophies could not equal to the grace by which I stand

In Christ alone
I place my trust
And find my glory in the power of the cross
In every victory
Let it be said of me
My source of strength
My source of hope
Is Christ alone

In Christ alone do I glory
For only by His grace I am redeemed
For only His tender mercy
Could reach beyond my weakness to my need
And now I seek no greater honor in just to know Him more
And to count my gains but losses to the glory of my Lord

In Christ alone
I place my trust
And find my glory in the power of the cross
In every victory
Let it be said of me
My source of strength
My source of hope
Is Christ alone

Miss my Momma!

I like Texas the weather right now is nice here and we have enjoyed the pool. Connor isn't allowed in the pool anymore because Doctor Chan is afraid it could be harboring some germs and viruses so we are all confined to the room like quarantined animals. I feel so sorry for Connor because there is so much he could be seeing and doing here! I really miss my Mom and my Husband. My Mom has done so much to help out when I know that deep down she is freaking out. My mom is so much fun and I miss her like crazy. Don't worry mom we will be on our way home from here soon and we will get to play the "In My Pants" Game for 9 hours! (LOL this game is not perverted as the name would imply!) I know some of you guys are wondering what exactly that game is and it is where you read signs you see out loud and follow it up with the saying in my pants! So you would say something like eat fresh in my pants! Maybe something like Fresh meat in your pants! LOL we played this when my son got out of the hospital once and my Grandma was with us and she loved the game!(You would have to know my Grandma, she doesn't swear or anything. She is probably the closest person I have seen to an angel!) Anyways we pulled in at a truck stop to eat and she saw the sign for the icecream cone holder on the wall and blurted out "Tastes Good in MY Pants!" Then laughed uproarously. She is so much fun and my Mom is so much like her! I can't wait till Mom gets down here, hopefully she won't have many bouts with her shortcut sickness! My husband and I have never been seperated for a long period of time and I am missing him like crazy! We text and talk often but I miss his warm embrace and all the support he gives when I feel I can't go on! I miss going up the stairs in front of him and having to worry if he is gonna grab the backs of my legs on the way up to tickle me! I miss my normal life. Right now normal seems so far away. I miss the smell of the Magnolias and Honeysuckle. I miss watching Connor's head shine in the moonlight on our balcony, and throwing water ballons over the balcony at my husband to ambush him when he gets off work! We have so much fun in our family that it makes it hard to be seperated from any of them.

San Antonio

Well, here we are. We made it to San Antonio, and I forgot how crazy the roads are down here! Its alot different than the slow pokes back home. LOL I love you slow pokes though! We were at the hospital all day today. It was alot of information, some of it wasn't stuff I wanted to hear but you know me, gotta know it all! We found out today that Connor has over a 90% chance of being sterile after all of this. That breaks my heart to know. Even though I have heard it and read it before it was hard to hear from his doctors. We also found out that without a transplant his chances of Leukemia coming back is 85% and that with the transplant the chances of it coming back are 25%. Still not the chances I would like to hear but at least it is an improvement! I miss my husband and feel so alone in all of this. It feels like my family is being torn apart and I have no control over it. I worry so much about Connor and how he is going to hold up Physically and Emotionally thru all of this. I wonder if he will ever have to worry about a relapse again or if this will fix it. Everyone is so optimistic about all of this, but it is hard for me to be positive. Life has went to crap over the last 2 years and I can't do diddly crap about it! I wish we knew what caused this crap in the first place. Where did it come from? Could we have stopped it? Can we prevent it from coming back? Grrr just wish we could get this over with and he could have a normal life. He is such a great kid and deserves to have a normal disease free life. He shouldn't have to go thru this. Anyways I am rambling so I will quit. Maybe I will write more tomorrow.
Amy