Prayer Request

Ivee had to be put in the hospital yesterday. She had a fever as high as 103.6. She has an infection around her feeding tube. They have put her on 3 different antibiotics. They are doing cultures to see what kind of infection it is. She is in alot of pain, and the fever goes away with tylenol, but comes right back when it wears off. There is also a knot that has come up on top of her head near her old drainage tube scar. They took xrays to see what it is. Well probably have the results on that tomorrow.
We also met with the radiologist, Dr. Wynn. He told us what he wants to do for Ivee's radiation regimen. We would start immediately in July when the chemo and 6 month MRI are done. Radiation would be 5 days a week for 5/6 weeks. With Ivee's age, they will need to sedate her for each treatment. This poses a problem. Radiation is done one the USA campus in the cancer clinic. Since babies are not radiated hardly ever, there is no one there that does anesthesiology. Also, there cameras aren't truly set up to watch her as closely as needed. Dr. Wynn is trying to see how we can fix both of these problems. If radiation were done in a hospital or next door to one, sedating her wouldn't be that hard, but in this case someone would have to come everyday of the week and do it. He is trying, but it may not happen.
If it doesn't, Ivee and I will have to leave for 6 weeks and either go to UAB or St. Jude's, leaving Emmett and the other two kids here. We would also (probably) have to find a place for us to stay while we are there. We are lifting in prayer that God will provide a way to keep Ivee here and have the radiation done. Dr. Wynn is still working on it, and will hope to know what needs to happen by mid June. Please, lift this up in prayer with us. Both of the radiation and for the illness she has right now. That you and God bless.

a WHOLE Jar

Well, Ivee just ate a whole 2 oz jar of applesauce. You just can't feel her fast enough. She is doing so well. I'm going to have to find a way to get the film on here.

No Confussion...

Okay, cause of an email I recieved, I think I have confussed some people. The MRI back in April revealed no Visible signs of cancer. Now, this is to say that the rest of her tumor has gone, but there may still be cancer cells. Ivee's cancer is of the cells of her ventricles. So, anywhere that her ventricles pass through her head, her cancer can grow and appear. The doctor's (oncologist) have shown us the data. If we were to stop treatment after this last dose of chemo, Ivee (according to statistics) has a 16% of survival. With radiation treatment, it will increase that percentage to 87%. So, we are still going to chemotherapy treatments. We'll have anther MRI at the end of June. We have an appointment with the radiologist of oncology at USA campus next Tuesday to discuss her plan. It will probably be radiation for 6 weeks, 5 days a week.
So, I hope this clears things up. Ivee is not out of the woods. Her cancer is aggressive, and in many has come back later.
Now, with all that said. I still know who is in control and who the ultimate healer is. If God tells me straight out in some way not to do radiation, then Emmett and I will listen, but we will not be foolish. I know you all know what we mean. Well, I have rambled enough. If anyone has any questions, please ask. I would be happy to answer any.
Thanks for the prayers and we love you all. Hope and Emmett

IVEE'S Birthday

Well, the day is here. Yeah!!! We are in USA C&W right now, and daddy was singing happy birthday, and as soon as he finished, a flood of hospital staff (who have been with us along this journey) came in singing happy birthday and bringing all kinds of presents. Surprisingly, Ivee didn't cry. She smiled. Her eyes look so tired, but she is still a happy girl. Daddy and I are so full of emotion today.

In accomplishments, Ivee is now saying dada along with saying mama. She is turning over "like crazy!" She gets up on her knees and tries to crawl, but it is more like pushing her head along. She is SOOOOOO close to sitting by herself, but she is lazy, and she won't keep her hands down to steady herself. Her balance is still a little off. We are so proud of her accomplishments.

Doing fine

Ivee is still doing fine. She seems to be getting smarter everyday. Making cute new faces, crying to get what she wants, typical one year old stuff. I can't believe her birthday is next week.
Right now she is having a problem with her g button still. It has what they call "over growth". It is very tender and hurts alot. So, anytime I have to put her feeding tube in the button, she just cries. My pastor's dad is in his 80s and also has the same button and tube. He also has over growth. He cries every time they have to do it too, and he says it hurts horribly, so now I know that it hurts her alot. The surgeon will see her next week while we are in patient. Hopefully they can do something for her.

A day at home...finally

Well, Ivee is finally spending a day at home. She came home Saturday, and her white blood cell count is up. She was in chemo yesterday, and then we had to go to the surgeon's office. Her stitches that hold the chemo port to her body so it won't move came out and were healing up. We had to restitch it to her. So, that was a traumatic ordeal. So, finally she is at home today. The occupational therapist just left and said that she is doing even better than she was doing last week. So, we are doing okay. Tomorrow she has an extremely lengthy appointment with the development center at the hospital. Pray that she can do well during this time. She just doesn't like strangers at all.

Hospital stay

The doctor said we'll be in the hospital until Saturday or Sunday morning, cause she wants to make sure Ivee gets 3 days of antibiotics. So far, the blood cultures aren't growing anything. Therefore, we believe that the g button infection must have been the cause of the fever.

In the hospital

I had to bring Ivee into the hospital at 11 pm last night. She had a fever of 101.4 and there is an infection around her g-button (feeding tube). She didn't act like herself much yesterday, so I knew she wasn't feeling well. We will be in the hospital at least until Friday morning. She is sleeping on daddy's chest right now, so she is getting some pretty descent sleep. I'll let you all know anything if I find out anything.

If your happy and you know it...

First, I just wanted to post a picture of Ivee pre-surgery at 7 months, and one from 11 months. Doesn't she look so good again. She got ner chunck back with a vengence! She is doing so well lately. She, this past week, reached that all important, I can clap my hands on my own, and even when prompted too stage. It is so cute, especially since "if your happy and you know it clap your hands" is her favorite song. We think that within a few weeks she'll be sitting on her own, cause she is doing so well pushing up. Balance is still an issue, but more importantly is that she won't keep her hands down to support herself. But she wants to grab everything around her.
It makes it really hard to do anything medical things, cause she wants to grab everything that I am trying to do.
She is handling the chemo okay. Had another dose today. She has to take magnesium right now. And it gives her very loose stools. Her tummy hurts alot, and she has violent explosions. My heart aches for her. And the diaper rash is getting pretty bad again. Pray that it will go away quickly and not linger like it did last time.
For good pics of my sister, Sonias, baby, click on the Baughman link to the left. And Jennifer, my friend who had the surgery is at home. Her blog is to the left also, The Busby's. Thank you for the prayers. I know I say that everytime, but you know I believe that praying has so much to do with Ivee's healing. The physical therapist comes back tomorrow. She hasn't been here in three weeks. Pray that it goes well. Well, it's late and I'm done. Love you all.

Hope and Glory

I am playing video games with my daddy... it is fun. Emmett and are still rejoicing today in Ivee's results, but we don't want to give any of you a false idea of what is happening. We can't officially say that Ivee is cancer free. Em and I believe that God will completely heal her, but she is not out of "the woods" yet. Like I said below, we will have to continue treatment for now. We can't forget that this is an aggressive cancer. We have to keep in mind that something may appear on the 6 month MRI. The oncologist said that usually the first MRI after treatment begins can be better than the ones further down the road. BUT(But...I'm always reminded of that word in context to scripture, and in this case look forward to it) I BELIEVE that my God is greater than what the doctors say. I know they have seen many cases of cancer, and many different scenarios, BUT I don't trust in science and in man. I trust in the Great Healer and Physician. I remember when they said that Ivee's odds were low (statistically) that was the first day I had actually felt discouraged in this trial. So, I will not let any one's words discourage me. I also remember all of you, and know that your constant prayers go up everyday, and I know God hears them. So, just know that I will never lose hope, and the same God who told my spirit that she would be fine from the fall and that he needed to reveal something that was endangering her life, is the same God who tells my spirit now that he is still in control. I just pray that our faith is proved genuine and that those doctors and nurses around us will see what a Great God we serve, and it will be a testimony of our faith and his glory. Love all of you, and thank you for rejoicing with us.

My New Neice

Here are new pics of my new neice born today. Her name is Haley (not sure of spelling yet). Just got the pics on my phone and wanted to share them. Blogged early of Ivee's report. It's in the report below. Keep in touch.

Offical Report

Here are Ivee and Ethan last month. He wanted to hold her. So sweet. PS. i AM AN AUNT AGAIN. MY SISTER JUST HAD HER BABY GIRL (#2), 7LBS 4 OZ. DON'T KNOW ALL THE DETAILS RIGHT NOW. WHEN I KNOW, YOU'LL KNOW. Okay, we are in the hospital today for the 2nd part of our 6 months of chemotherapy. The oncologist brought us the radiologist report. Officially the radiologist and the oncologist see no visible signs of cancer, and the spinal tap came back negative of cancer cells. So, I guess in layman's terms, Ivee is cancer free as far as anyone can tell. She still has a seroma (cyst) like place where the surgery was, but this is the fluid build up, which has gone down considerably. So anyway, it is unbelievably great news.
Emmett told the oncologist, or reminded her, that almost 4 months ago, they told us that chemotherapy would not impact the tumor at all cause it is an aggressive and quick growing cancer, and chemo never showed any signs of having an affect on this cancer. The only treatment that ever made any progress was total resection (surgery) of the tumor and radiation. She was too young for radiation. The chemo was to just get her past her 1st birthday so that they could try radiation. They didn't even like to do radiation in children under 3 years old. Only 24 cases (people) a year are found to have this kind of cancer. I remember that doctor coming in 1 week after Ivee's brain surgery to tell us the pathology of the tumor. The statistics only gave Ivee a 30% survival rate. Well, she has beat the odds and all other logical reason. I mean...look at it. All that they said would or wouldn't happen has totally proven that science is not exact. They said she had a 30% chance, that she would be extremely sick from the chemo, that she would throw up, that she would have to have radiation...and none of that has happened. The oncologist said that it is definitely a miracle, and that we were right to never lose hope.
We know what has happened. The same person who pushed her from that grocery cart back in December, is the same person who took what was left of her tumor and made it...disappear. He has had his hand in all of this from the beginning of her life to right now. She is an amazing creation of God, and he has something special in mind for my little Ivee.
Now, she will have to finish out her chemotherapy roadmap, so we will continue until June with the chemo, and then we'll have another MRI to make sure she is still good to go. I'm sure for the next few years, she'll have to have checkups to make sure all is well.
Her road is still a long one. She still can't eat by mouth, so we'll have to continue with occupational therapy to get that ability back. She still is at the stage of a 5/6 month old, so we've got to get her to the age level she is suppose to be at, that means continually physical therapy.
Life will still not be back to normal for a very long time, but I still have my Ivee here in my life, and that is more important than her capabilities right now.
THANK YOU for your prayers and commitments to us. Remember to pray for her health, cause she is still very susceptible to illness since she is still on chemo. Pneumonia and other illnesses are still a big threat to her. We are in the process of starting the stairs to the attic very soon, so that Ivee can have her own room. Pray that the finances will be there as we need them (that will take some planning and being wise on our part). Pray for those who are helping us with that project (that they will be safe and no one will cut a finger off or something). Don't forget to comment. I enjoy them so much. Love to all of you...and PRAISE GOD!

Pictures of Easter

Here are pictures of the kids from today. Don't they all look so nice! I'll be in the hospital with Ivee the next few days. Should find out more news on the MRI, and will let all of you know what is decided. Love ya, and Happy Easter.

Ivee's Unoffical MRI report

We have only heard from the oncologist on Ivee's MRI. The oncologist said the remaining tumor has dramatically reduced in size. She sees no real visible signs of any tumor at all. So that is great news. NOW...this is unoffical, and we don't know what the radiologist or the neurosurgeon may see. The radiologist is trained to look for anything out of place, but we are believing that the cancer is gone. We won't have the results of the spinal tap until next week. There could still be cancerous cells. So, keep believing in miracles. We will meet with everyone (docs) on Monday when we go in for treatment to look at the old MRIs and the new one, and we will discuss what everyone does (or doesn't) see. Thank you for the countless hours of prayer. God bless each one of you this Easter Weekend. Let us rejoice in the Lord for his gift of salvation to each of us as we remember the Resurrection. :)
Keep believing!

MRI and Jennifer's Surgery

Hello everyone. As you can see I am just splendid. I was crusin the other day, just chillin in my car seat watching Nemo. You know, even though I have seen that film well over 200 times in my lifetime, being that I am almost 11 months you know, it's cinemaphotography and lifelike realism just tickles that very imaginative part of my soul. Well, I do go on and on don't I. I get it from my sister Brittney. Well, on this particular day, I felt very lively, so the big people, I believe they are called mama and dada, took me out at my request. But, after a few hours, I did become quite exhausted. The stroller is wonderful place for a nap. So, I insisted that they go eat at Santa Fe's Southwest Grill while I got my beauty sleep. Well, I have gabbed long enough. Tata for now my sweets and I will converse with you at a later date.
Well, My Ivee can go on and on can't she. I think it is helping that the pollen season is coming to an end. First, Jennifer came through her surgery just fine. The doctors said it went way better than expected. They removed 95% of the tumors and 10 liters of fluid of her abdomen. 10 LITERS of fluid. That is unbelievable. For those of you who don't know her, or didn't get to see her post surgery, she is a very slender lady who looked 9 months pregnant. All of that was tumors and fluid. She is doing fine and in ICU as I type. Pray for a quick and full recovery.
As for my Ivee...her MRI and Spinal tap are scheduled for this coming Thursday morning at 10 am. They'll sedate her for everything, thank God. She is still doing great this week. If all goes as planned, we will resume chemo next week. I guess we won't truly know what we are doing until the MRI and tap come back.
My other kids are doing well. Sometimes it seems like there is nothing happening at all. Then other days you can tell they are affected by all of this. It is hard to know what they are feeling sometimes. And poor Brittney, who will be 11 in July...well, she is just beginning the emotions that all girls face. Her attitude is becoming wirey (if you know what I mean). You push a button, and you just don't know what emotion it will set off. Ethan, 7, is usually oblivious, but sometimes he voices his concerns. So, you know that he thinks of it, even if he doesn't always understand what is going on. Someone offered to take the baby the other day so that he could be the baby again. He said no, and they said why not. He said, cause I like her.
You know, Em and I are just still flabbergasted by all that people have done for us, and are still doing. Some gentlemen from a church down the road from our church came by Sunday. They are in a brotherhood there of retirees. They all have different backgrounds...from carpentry to electrical to other stuff. They want to help us build the stairs to our attic, and help with transforming it into another bedroom so that Ivee can have her own room. They don't even know us. They only know of us cause a friend of mines parents go to their church, and have told everyone of our little baby, and her medical condition. And God has blessed us with a tax return so we can afford to by the lumber for the stairs. We just needed someone who would know what they were doing and would do it cheap. God brought us the brotherhood from that church who is going to help for free. I guess I'll have to cook them a good meal! :) You all are such a blessing. I give thanks to God for each one of you.

Just a note. My husband says I need to proof read before I post, but who has time for that. I'm typing when I can. I told him that all of you understand me, and that is enough. LOL.

Ivee

Ivee's blood count was up this past Thursday. She is feeling great, except for the typical baby fits so common to little ones. She is acting all nutty now in her playing, flailing about, so we call her "crazy baby". She is still demanding her sweet tea at every meal. The occupational therapist came to evaluate this past Thursday. She'll come by for a while every week to help develop Ivee's fine motor skills. According to her and the physical therapist, Ivee is at the level of a 5 or 6 month old. Still waiting to see when her MRI and spinal tap are for this week. I'll let you know.
I ask pray for my friend Jennifer Busby for her surgery tomorrow to have her tumors removed. Pray for safety, the doctors hands and eyes, and that God will come through in a complete healing way. Also, pray for her husband Kevin, kids Meredith and Jacob, and her family. Pray that they will have peace and be encouraged.
Thank you everyone for your never ceasing prayers. I hope to get better on my blogging. I've fallen behind. I LOVE YOU ALL!

Ivee this week

Well, Ivee is not feeling so well today. I blieve she has a cold. The nurse called and said that her lab results came back low. Her white blood cells are down, and so is her blood sugar, as well as other areas. So, we won't be getting out much right now uintil they come back up. Pray for sanity, and for Ivee to become well again. WSell, that is all the time I have at the moment. I'll update when she has another lab test done on thursday.

another milestone

Ivee had a pretty good day today. She is still really congested, but in a great mood. Today, she reached another milestone. She rolled over and pushed herself up. She did this a few times. She could do this before the surgery, so as of now she is where she was at 7 months. The next step is sitting up on her own. I am so proud of her. It seems that sometimes the physical therapy just isn't doing anything, then all of a sudden she just does something on her own. She is amazing.
The nights are still rough, but once the congestion is gone, I believe it will improve.
I have more pics and video. Hopefully I can get something on here soon.

Sorry this is late

Sorry I am late blogging, but it has been a long week. Ivee was discharged Wednesday for the night. We came outpatient yesterday and today for chemotherapy. The treatments are pretty hard this time. She (and her parents) don't sleep well at night. She is really nauseated most of the time. She is constantly gagging. Her potassium and magnesium are low, so she is taking those extra this time. Emmett and I pray that the nausea will end soon. It is a good thing that these were not our first chemo drugs, or I would have been depressed even more of the get-go. The first two months, she did really well. So now I know what to expect the next three months of treatment...if they are needed. She will have another MRI in three weeks. We will then know if there has been any change with her tumor. Physical therapy begins again next week. She didn't do too well the last two times she had it. It is a big struggle for her. Pray that she will feel well enough to try to start back to therapy and do well next week. She is still improving, but it would be great to see her hold her head up while lying on her stomach again. And we would be thrilled if she could sit up and maybe even crawl by her birthday, which is less than two months away.
Well, I know I have rambled, and that some of what I said may not make sense. It's cause I'm dealing with a huge case of sleep deprivation. Thanks for the comments and prayers. We enjoy them all. And as we all know...well those of you who read the comments also, that Paula always has something worth reading. Even if it is corny. Love it Paula.
PS. Ivee did break free of baby jail. She'll give you all the details later.

Day 1 for real...

Well, today was a long hard day again. Ivee went into surgery at 8:30 am. We got to go back to the recovery room to see her about 11:20 am. She was not happy to be in there. I picked her up and held her, and she calmed down and went to sleep. I just felt like we were starting all over again. She has come so far, and then here we are again...intibating her, causeing conjestion, IV holes, knew stiches and proding...I just didn't want to start it all over again. She has had a long day. She's on Chemo now and it will go for 6 hours, which is til 12:30 pm. She wants to be held, but there are too many tubes hooked to her right now, so it is really hard. I have to go now. She is crying. Pray.

I know...

Two post in one day. Crazy. Well, the film came back, and Ivee will have to go back into surgery again tomorrow morning. The hickman line (chemo Line) has drawn back 5cm. That is just too much. So they either fix the one in there, or give her a new one. They tried to get an IV on her earlier for surgery, but after 6 blowouts, they stopped trying. They'll let anesthesia try it in the morning. Please, pray they find a vein that won't blow. She's okay now, but of course, now when anyone new walks in the room, she cries thinking they are going to hold her down and poke her again. She is watching Nemo now, so all is well. Keep praying and God will keep listening and answering. You are all loved and appreciated.

Day 1 of month 3, and I love my sweet tea

Well, this first picture is not the hospital. It was taken this weekend. We went out to eat, and my papaw is giving me sweet tea after I grabbed the cup from his hand and tried to get it myself. I was just trying to be helpful. But NOW I am being punished for my offense. I am now being held in "baby prison." I devised a plan to look cute and cuddly, but the big people...I believe I am learning that one of their names is mama... well, they are not falling for it. I am devising a way to get out now, but so far my attempts have failed. Stay posted for future plans of escape. Hopefully the big people will go to sleep tonight, and I can make another attempt.




Once again Ivee wanted to address you all. She has such a vivid imagination. We are in the hospital again. Right now we are waiting for xray and a surgeon to look at the film and let us know if her central line is okay. It has moved out quite a bit since the stiches came out. I'll keep you informed when we get more information. If the line is okay, we'll begin chemo today.

Ivee Update

Ivee is doing well. Monday she had a swallowing test. She is swallowing much better. They gave us permission to give her thin liquids. Her swallowing is weak, so we'll have to work with her to strengthen it. She still loves sweet tea. We'll try to get her to drink apple juice and other stuff, but in the end, sweet tea wins out. We even gave her chocolate milkshake. It just wasn't what she wants. She's such a southern girl.
Also, she had a hearing test on Tuesday. There is no problem with her hearing organs. They are clear and in tack. She passed the echo test, which tells us the organs are working fine. One of the chemotherapy drugs she goes on next week can damage hearing, so we needed to see where her hearing stands before the drugs. We'll go back in 3 months to see if there is any damage before she has a dose of the same drug again.
She is still improving physically. On the 21st she'll go for a 2 hour visit to the USA development center, to see where she ISN'T physically. We know she is really behind, but everyday she does something that makes me believe in a full recovery.
Well she is fussy, gotta go. Oh, she is getting her top teeth. The right one broke through, so they are bothering her. Once they come in really good, we'll get pics.

Blood Sugar

I have just a minute. But, I wanted everyone to know that her blood sugar is up. It is 76. That is pretty good. Her other levels were pretty good also. The nurse said somethings were high or low, but over all shee looks great. Thanks for the prayers.

Ivee's Blood Sugar Levels

Ivee's white blood cell came back great today, so we no longer have to give her the booster shot here at home. But, her blood sugar levels came back low. They took blood Monday and the levels came back really low. A 19 (normal is between 80 and 100). We believe it was a mistake, cause she was acting all happy and was active. If they were that low, she should have been droggy and unresponsive. So, it had to be wrong. So they took blood again this morning. The number was higher than it was Monday, but it was still low. A 59. We are increasing her feeds to see if we can bring the levels up. They'll take more blood Thursday, so we'll see what the levels are then.

I'm feeling better

>"I have been on Sudafed since last Friday, and I am finally feeling better. I slept through the night Saturday night, and last night I slept until 4:30 am when my feeding machine went off. But I went right back to sleep. Above you can see me in my baby prison :). Daddy is assisting me in sitting up. I'm doing better, but mommy is ready for me to start puttin my hands down to support me on my own, instead of her doing it. Well, right now I am watching Nemo, so I must cut it short. Just wanted to reach out to all my fans. You must remember the little people you know. They are the ones who support you. Love you all! Ivee"
Ivee just wanted to speak to you all. Pray that she gets great results from her blood work today. We want her white blood cell count to be up so that we won't have to give her a shot any longer. Well, for 2 weeks anyway. She goes in for her swallowing test on Monday, March 5th. She is still wanting to drink tea from a glass. Nothing by bottle, and formula by mouth...not happening. The formula she is on smells pretty nasty, so it probably taste that way too.
Emmett and I (and Brittney) got to sing at my dad's church yesterday morning. It is the church I grew up in. It was dad's 70th birthday. The church there has supported us through pray and financially since all this happened. We are very grateful to them.
I have a new prayer request this week. My friend Jennifer Busby has been fighting cancer for many years now. She had a really hard week last week and lots of pain. They have discovered new growth in her abdoman. The docs isolated the type of cancer so that they can better treat it, but it is really hard on her and her family. Please remember Jennifer, Kevin, Meredith and Jacob in your prayers. And pray for complete healing of her cancer. I know that it has to be hard fighting it these many years. I must be more than 3 or 4. I can't say that I really know. I do know they are kind and generous to our family, especially in our time of need.
YOU ARE AWESOME.

Chemo Break

Well, Ivee is on a chemo break for the next two weeks. She doesn't go back in until March 12th. She is still progressing well. She has rolled over to her stomach and then back to her back. She is holding her head up well. Her physical therapist is pleased with her progress. Of course, Ivee will never do what the PT wants when she is here. I have to always tell her what Ivee does. Ivee likes to wait til the PT leave the house, then she rolls over or does something else that Carla (the PT) wants her to do. Just proof that Ivee is a woman.
Ivee is still struggling with her gagging and congestion. She just can't seem to knock this stuff out of her system. I really believe that she may have allergies. Her eyes water alot, and she is always rubbing them. Just seems like typical allergy symptoms.
Begin to pray now for Ivee's MRI in 6 weeks. Pray that the chemotherapy is having an impact on her tumor. Sometimes the "mind boogers" catch up with me and Emmett. Satan tries to remind us of the statistics with her condition, and that the survival numbers are low. We are trying not to let him have the victory. We know that God is the supreme physician, and that he revealed the tumor, so Ivee is completely in his hands. Most days, besides the fact that she has to be suctioned and we have to feed her through her stomach, I feel like things are kinda normal. As if she was still a 5 month old or something. Then I remind myself that she should be sitting, and crawling by now, and I get discouraged that I don't have a normal child. And then I hit myself (not literaly) and say "hey, stupid, She rolled over and held her head up today." Then I am thankful that she will one day do those things. And if she progresses like she has been, she may be crawling by her 1st birthday.
Oh, I forgot, Ivee is talking now. She is not the typical baby. She said Mama first. Making the mmm sound and not the ddd sound. Daddy doesn't mind. He's just glad she is using her voice. She has been intibated so much, we were afraid there might be vocal chord damage. But she is verbalizing. She is also waving bye-bye, even though she doesn't know that is what it is. She's so cute.
Well, I've rambled enough. Oh, but great reports on my friends. Diane's little girl came back with negative results for TB, so Katie is doing fine. And my friend Deborah had her baby this past Monday. If you would just like to see pics of her little girl Erin, click on the Deb Chastain link to the left. Thanks everyone, and God bless.

Ivee's Journey by Pictures

Here are pics of Ivee's journey for some who are newer to this site. For my soapers, there is a pic of her holding her head up and doing well on her own (well with some assistance from daddy). Enjoy.

Ivee's Accomplishments

Ivee has done well today. She rolled over from her back to her belly. She couldn't get back over since she can't lift her head. She's doing really well at progressing on her own with no assistance. Also, most of you know that we are having trouble getting Ivee to take any kind of bottle. My dad was over here tonight, and he got her to drink from a glass. She actually would respond with her mouth when he put the glass up to her. It wasn't formula (it was tea, and not much of it) but she did drink it and swallow. She's just full of surprises. For all of you who are praying for her, your prayers are doing good. She just amazes me every day!!! She's one tough little baby.
We are trying our best to progress in helping to get our home better suited for Ivee. Emmett is trying to complete the wood shop outside, so we can begin renovating the attic of our house. We only have a 3 bedroom, 2 bath. Britt and Ethan are in those rooms, and Ivee is now in ours (and the living room). Our home is more like a hospital now. Anyway, we are trying to move our daughter upstairs to a new room to get Ivee her own room, which she needs. So, a new prayer you can add to your list is to pray that finances, time and other things will fall into place to easily make this happen.
Thanks for all the love and caring you give us each day. You are all awesome.

Day 2

Day 2 and all is well. Ivee is not feeling too bad! The steroid they give her during this treatment time makes her a little hyper. She kicks her feet and arms alot, and turns her head back and forth. Like a nutty kid. It is funny to watch. I wish they could send some home with her, so that when she is in a bad mood I can give it to her. It puts her in a pretty good mood.
I am pretty excited. My friend Deborah (she's been my friend since kindergarten) will be having her first baby any day now. A baby girl. They have been trying for a few years, so I am thrilled that they finally are going to get to experience what I've had the blessing of for the last 10 years.
Also, for the prayer warriors out there. Lift up a prayer for my friend Diane's daughter Katie. They found a mass in her lungs. The doctors believe it is a benign tumor and it is in the lining of her lung. The last step for them to take is for Katie to have a skin test to see if she has ever been exposed to tuberculosis. If that test is positive, they will treat her for that; if it is negative, then they are finished. There is no need to remove it. So let's pray that it is just that...
Oh and Diane, Happy belated birthday. Sorry, it just hit me that I missed it.
Thanks for everyone's prayers. Hopefully she will continue to progress as well as she already is.

Month 2

This Monday we enter week 5 of chemotherapy, so Ivee and I will be in the hospital for 3 to 4 days. She is still doing well. The last few days she has become more irretable at times. I believe she has gotten her "appetite" back. When it is approaching feeding time, I believe she is actually getting hungry. Nothing seems to satisfy her until her belly is full. A bit of the old Ivee is back as well. She has learned to cry when she wants her way. She'll be fine, and then if she sees me or Emmett she'll cry until we come over and talk to her or pick her up. That is the old Ivee.
Yesterday, she was laying on my shoulder, and she lifted her head up a good bit to look at the kids. She did this a few times. It was good. Thanks for the recent comments. And Samy/Shelley...I was happy to recieve your comment. Samy, I am very grateful that you were there when all of this began. I knew that I could trust what you read on the CT and MRI scans.
Everyone take care. And I'll try to stay in touch this week.

Home

We got home last night. Ivee is doing well. She gets choked and gagged on the mucus often. If we could just get it cleared up, she could probably do some really good swallowing on her own.
She is doing really great at Physical Therapy. She is starting to hold her head up on her own. She is making terrific progress. We check in to the hospital next Monday for the 2nd round of multiple chemo doses. We'll be in there for about 3 or 4 days. She'll get her G Button, which will be alot easier for us to feed her and give meds. She likes to pull on her tube.
Hey, I'm missing some of you. Paula, where did you go? : ) Thanks for the talks. That goes for all of you.

We're here again

We are in the hospital again as of this past Friday. Ivee spiked a temp Friday morning. So, anytime she gets a temp, we have to take her in. She no longer had a temp after that one time, but they did labs on her and took xrays. She has viral broncilitis. And we are waiting for the 72 hour blood and urine cultures to come back to see if there is anything bacterial. She is doing fine though...playing and laughing. She does get gagged a whole lot, trying to cough up all the mucus and stuff. Suctioning doesn't seem to help her any, cause it is just so thick.

By Popular Demand

Well, by popular demand, and a few emails, here are some pictures of Ivee.
Here is a picture of her today. As you can see the swelling in her face has really gone down. Her right eye is still "sticking" to the corner. Hopefully this is fix in time. The swelling in the back of her head is s..l..o..w..l..y going down. I feel like it is going to take forever.

Physical Therapy

Ivee is doing as she normally does after chemo. She slept pretty much all day yesterday. Today the physical therapist came by again. We worked with her on the floor. She did really well. She even pulled herself up some to a sitting position. This is huge. She could never do this before. We still have to support her head, but the swelling is beginning to go down now. It still hurts her to pick her up, but she is showing great progress. Her swallowing test is Friday morning. Pray that we will get great results. I still can't get her to take a bottle at home to practice. I try, but she just won't take it. She is taking the pacifier very well, though. Thanks for the comments you are leaving. Many of you give great advice. Some things I already do, but hey, it doesn't hurt to offer advice. Love and blessings to you all.

Doing FINE

Ivee is doing fine. Her head is still swollen, still waiting for that to go away. She still goes to the hospital on Monday's for chemotherapy. She has a swallowing test this coming Friday. She has had a horrible case of diaper rash, again, but we are working on getting rid of it. This may be common thing for the whole 6 months of chemotherapy. She has good nights, and not so good nights. Her white blood cell count is high. This is good. Normal is anywhere from 4,000 to 10,000. Her count is 17,000. She is still having trouble with sinusitis and an ear infection even though she is on an antibiotic. Taking care of her is a full time job. She's on many medications, and a frequent feeding schedule. I have to make a hour by hour, day by day chart to make sure I don't miss anything. A physical therapist comes by two times a week to work with her. She has shown me some exercises I can do with her to help her regain her head control and strength, roll over, and maybe get her up to speed on the things she should be doing, but couldn't do before. Such as sit up on her own and prop herself up. Mommy and daddy are tired, but we are pleased to be home taking care of her. You definitely get NO rest in a hospital.
We can take her out of the house now, since her blood cell count is high. We still need to be cautious, especially around kids and people who are feeling under the weather. So, please... if you see us out and about, and you aren't feeling well, or have just been around someone who is sick, just wave from a distance. We know you care. We just need to be careful for now til we know exactly how she is going to be.
God bless, and I hope this keeps everyone satisfied until I can post again.

Tuesday and Physical Therapy

Here's Ivee riding home from the hospital last Friday.

She had a pretty good day today, and a descent night of sleep. The physical therapist came by and did an eval with her. We are going to work on getting her neck muscles strong again, and work on getting her back to rolling over and eventually sitting up. Also, to get her to push up on her legs. All the things that she should be doing for a 8 month old. She did well with her 2nd dose of chemotherapy yesterday. Her feeds are still bothering her, but we have found a way to do the bolus feeds (where we just pour it in the tube) so that she isn't as irratated. The continuous night feeds are better now, also, since we have changed the rate of cc's she receives an hour. I had to give her my first shot today. Daddy has been doing that, and mommy does all the other medical stuff. Changing dressings, giving meds, and etc. But today I had to give the shot, cause we didn't want to wake her up. So, we'll continue to heal, and continue chemo, and continue to learn again.

I also want to say give out a special tahnk you. 1st...to all of you who comment. It is such a encouragement, and sometimes, just makes me laugh. And we all know laughter is the best medicine. 2nd... There have been many people and churches who have been giving their support through prayer and financially. God bless yu all. You have allowed us to be there for each other and Ivee.

One full day at home

We have been home for more than one full day. Ivee is doing well. We have gotten many smiles from her. We believe she knows she is home, but we are not sure. I believe she does know that is not at the place where people mess with her all the time. Last night was rough. She is not responding very well to her feeds. They hurt her stomach, I believe. She was on continuous feed last night, and after a few hours of no one getting good sleep, I turned it off. Then we all got about 3 hours of sleep. We are cutting her feeds down some tonight to see if this helps. She is gagging horribly, causing her to heave. We are giving her medicine to keep her from being nauseated. She needs alot of attention with all her meds, suctioning, and feedings. It definitely won't be easy. Em and I enjoy being home with her, but it is kinda scary knowing that if something happens, there isn't a nurse at the call button. Pray that she gets over her sinusitous, ear infection, and urinary tract infection. The mucus drainage is her worst enemy right now. And also that she will begin to respond positively to her feedings. And pray that Emmett and I will be wise with her care. Thanks for your attention to Ivee and your urgency to lift her up in prayer. It was told to me that my little boy, Ethan, was praying Wednesday night at church for Ivee. And when he was done he told his teacher. God heard my prayer. He hears all prayers. I know it is true, and none of your prayers are in vain. God bless.

48 Hours later

We are now over 48 hours past chemotherapy. Ivee didn't get sick one time. Praise God! There seems to be no issues with her bladder or urine right now, which is good. She has smiled alot lately and daddy has even gotten to to laugh softly and briefly a few times. She is doing great. The swelling on her head is still there, so we are still unsure of that outcome. If she does end up needing a shunt this month, that surgery would have to take place 3 weeks from now. We just really need the swelling to go away. I know it can last a while, just need signs that it is shrinking, even if slowly. Tomorrow we have a meeting at 2 pm to discuss what we need to do at home, and what we need for home healthcare. We have learned how to clean (flush) her central line, how to suction her throat out, and how to give her a shot. Next we have to learn how to change all her dressings. We have to be really careful about infection of her wounds. She's still on antibiotics for her sinuses, ear, and urine infection.
We are taking precautions for bringing her home (which we hope will be Friday). We are having the a/c ductwork cleaned out. We had smokers that have lived there before. We just got a new a/c unit, so that is a good thing. Many people have been over to clean our house, dusted, mopped, vaccum, etc. Many thanks to them. And the doctor has cleared the fact that we have two inside dogs. They won't cause a problem. She just doesn't want them licking her on the face or anything. I assured her that they won't be near her.
Many, many thanks for those who are helping us and for those who pray for us daily. We feel so loved.

After Surgery

Ivee is sleeping, sometimes well, sometimes restless. She finished her first dose of chemotherapy 1 1/2 hours ago, and so far, all is well. The surgery went fine. The doctor said he was actually preping to take the first central line out, and it just fell out. It was simply to put the other one in, so it was relatively a short surgery. She really needs a great night of sleep tonight, cause last night, yesterday in general, was a very hard day for her. It took 9 tries to get an IV in her arm. They keep blowing out. It was horrible. But, we were just moments away from starting chemo yesterday, when the puffyness started in her neck and we noticed the leak on her side. If that hadn't have happened and we didn't know something was wrong with the line, chemo would have started, and something could have gone horribly wrong. Once again, God was just proving that he knew what was best. WEll, she is beginning to cry, so I'll be going now.

MLK Jr Day

MY LORD! KOULD something JUST go RIGHT "day." Ivee is going back into surgery today to fix the central line. The OR was closed today, but the surgeon is getting her in. I'll inform you all of more later, cause they will be here soon. Keep praying.

Today is NOT the day

We caught her smiling today...and finally got proof...

Well, Ivee was being prepared to start chemo today. They came in and put a foley cath in cause you have to collect urine before and during chemo for many reasons. They have been running her on clear fluids through the central line. Well, around 1:00 pm we noticed her neckline (front) incision becoming puffy and leaking clear fluids. The ped doc came into the view it and the nurse told me she had another "dirty" cause she had just stuck her hand in the "run" out. After she left, I went over to change her and noticed that the pads around her central line were wet and blood tinged and so was the spot on the bed. It wasn't poop but a leak from her central line. We stopped her fluids and changed the dressing out, and the nurse called the surgeon. He came and pushed some fluid through and once again the line leaked and the incision became puffy again. Obviously there is a problem with the central line AGAIN. They are going to have to come take an xray to see if we can see a problem. So, likely there will be no chemo doses starting today. She still has the cath in right now, but it isn't collecting urine the way it should be.
We are trying to not become discouraged cause God's timing is perfect.
On a good note, her cordination with her hands and eyes is getting alot better. She loves her favorite rattle, it's a bear. It makes her smile, when she is in the mood. It doesn't happen often, so we are thrilled when it does. If anything else happens, and when we know if chemo will start, I'll keep you informed. God bless, and keep on praying.

We've moved

We still don't know the results of her test from yesterday, but we have already moved to the chemotherapy floor, room 420. So, our new phone number is 415-1420. She will probably begin chemo Sunday. We have to wait 48 hours post fever. She is doing well today. She's off oxygen. She also did a swallowing test today. She actually is swallowing some now, it is erratic, but it was there. The speech therapist was pleased, and wants to feed her 15 ccs of water by mouth twice a day, cause that is the best way to practice. Plus, water is safe in case she aspirates some of it.

Not quite yet

Well, Ivee had a so-so night. She had many blowouts, which is good, cause she hadn't had a BM in days. Now, she's had many. And every time, we've had to change the sheets. She contracted a low grade fever last night, and today it got up to 101.6. Her chest x-ray came back fine, even better than the last one. So they needed to check her for meningitis, so they did another spinal tap. She did fine during it. They also took a urine and mucus sample, and took some blood for blood work. Her liver enzymes are still going down. One kind is back to normal completely, but the other still has a bit of a way to go. So...with the enzymes still up and her having a fever, we can't start chemo at least for 48 hours...so probably Monday. Well hopefully know the results of the spinal tap sometime soon. Tomorrow, Ivee has a swallowing test at 10:00 a.m. to see if she is swallowing any.
Dr. Martino came by today, and she is still looking good. He is still hopeful that we won't need a shunt. If we begin chemo and the fluid gain comes back worse, then we would have to wait 3 weeks before he could perform that surgery, cause after her 1st dose of chemo, her white blood cells would be down and there would be a great risk of infection. We are trusting in God that since all is well, she won't need a shunt.
She is still responding well to feeds, and hopefully will continue too. She is still on TPNS and Lipids as well, but we have cut back on them a bit since she is digesting well.

Okay...Okay

I've gotten a lot of flack for not blogging already today. Sorry... for those of my soap opera fans who needed their daily fix : )
Ivee looks great today...color, eyes, actions. The swelling has gone down well, still a little in her neck. According to the CT scan yesterday, her ventricles look great and alot of the other swelling has gone down. She had another hearing test, and once again her left ear failed. So there probably is some hearing loss there. Still not sure why, or if it is permanent. She is now receiving food in her G tube. She is taking well to it, and now up to 5 oz a feeding. We are slowly wenning her of the TPNs and Lipids. We have put her back on rubinol to help dry up secretions, cause we were having to suction more and more. She'll have another swallowing test tomorrow or Friday to see if there is any progress. She'll also receive one more hearing test before Chemotherapy starts. Her weight is back up to what it was when we first came to the hospital. The physical therapist came by to "play" with her for a little while and was very pleased with her progress since last time she was here.
Also, the oncologist and nurse came by with the chemotherapy plan. The short version is... she'll receive chemo for 3 months. After 3 months she'll have an MRI to see if there is any progress. Then she'll resume the same treatment for 3 more months. MRI again, and depending of the doctors opinion, we may continue on chemo or start radiation. I know, usually radiation is not done on a child under 3, but it does happen in rare cases, and Ivee's cancer is rare and agressive. Emmett and I are praying for perfect healing after her 6 months of chemo. We know God can do it. He is able. So, if her liver enzymes and blood are at the right levels, she continues to receive food fine, and Dr. Martino clears her of needing a shunt, Ivee could possible start chemo this Friday. We'll keep you posted.
LOVE YOU ALL>

This morning's prayer need

Ivee's head and face are swollen today. It is probably a build up of CSF fluid. If it doesn't drain off of her brain, we will have to put a shunt in. Please, pray that the fluid disappears. She is also receiving a 2nd hearing test. It looks as though there is some hearing loss in her left ear, which is odd, cause the tumor was on the right side, not the left side.

Pretty Good Start

This week has started off okay for a Monday. I'll give a post in just a minute on Ivee, but first I wanted to say a big THANK YOU.
Thank you for...
...the prayers that many of you lift up daily and for spreading the word of Ivee's need for prayer.
...giving to our family in time of crisis. Many of you have blessed us financially. This means so much. We have been able to take the necessary time of from work to be with Ivee in her time of need. Because of you, we don't have to worry about getting the bills paid...at least for this time. You know medical bills : )
...giving of your time. Many of you have had the opportunity to sit with Ivee for us for a few hours here and there, so that we can be with our other kids, or go grab a bite to eat. It may seem small to you, but after being in the hospital for over three weeks, it is good to get away.
...for going above and beyond. Someone, who cares to go unnamed, cleaned our house for us. I'm sorry to say that after bringing home dirty clothes and Christmas presents, the house is starting to look sorry again. But the dishes are clean, and the clothes in the kids drawers are STILL FOLDED! I just need to get the house dusted and floors cleaned when I have a chance before Ivee, Lord willing, comes home in a week or so. Whoever you are THANK YOU. You have left me with a light load, and that means alot
...for the offers. Many of you have said if we need anything to just give you a call. You know I can't remember who all of you are. But the offer means alot.
SO THANKS to you all.
Okay, now back to Ivee. She had a good night last night. She did go into surgery today, but they only thing the Docs had to do was move the line back about a quarter of an inch, and that did the trick. So no more cutting, just stitching. She has rested well afterwards, but her face seems a bit swollen to us. They will try to start her on foods as soon as they hear from the dietician, and get her slowly off of the TPNs and Lipids. She is now only on Zantac for reflux and pain meds when needed.
The oncologist, Emran, came to see us today. He said her Liver enzymes are up, but they believe that is from one of the meds she was on. So they took her off the med. and will check to see if that was the cause of that problem. When her liver is cleared, the next day we will start chemotherapy. The plan was given to us today. She will be on chemo for 6 months. In 3 months she'll get an MRI to see what the progress is. By 6 months, she'll be over 1 year old, and if the tumor is still present she will begin radiation. Did I mention that the bone marrow, bone sample and spinal tap for CSF all came back clear (negative). We knew it would, cause God revealed the tumor just in the time that needed to be, and we are believing that he did this for a reason. Cause if it had been any later there would be "no hope", as the doctors say. I am believing in complete healing from the true physician. I know that even though the doctors believe chemo will have no affect on this type of tumor, my God is able to do abundantly more than man can even imagine. He wants to work a miracle in Ivee, and in many ways, already has.
So be in prayer that the central line will continue to work, and that God has all the glory in the victory in Ivee's life. Also, pray that she will have the least amount of side affects from the chemotherapy. There is so much more that I could tell you from the doctors stand point, but none of that matters when God is in control. Continue to spread the word so that God can be glorified. Your sister...Hope

Maybe not...

Here is Ivee a few days ago. She was playing around with her mouth, opening back and forth. She is looking much more like herself. This is prior to this past Friday's surgery.

Here is Ivee watching NEMO, her favorite movie, Friday morning.

Well, we thought perhaps we would never see the operating room for a while, but I guess not. I'll start with what's happen over the last 24 hours. After the older kids ball games yesterday, we returned to the hospital to check on Ivee. She was resting well. I left her under the care of my dad's watchful eye for the night. He said she had a rough night until about midnight. Then things calmed down. We got a phone call from dad this morning around 9:50 am, saying that Dr. Martino, the neurosurgeon, came in, and her wound in the back of her head was still leaking. So, he wanted to suture it again to stop it from leaking any further, cause he doesn't want to put a shunt in. We don't want that either. She's had enough surgeries and stuff done. And through out life, shunts can cause other problems, surgeries, test and infections. So, they took her into the PICU (peds. Intensive care unit), gave her some sedatives, and did a suture to her head. Only about 3 or 4 stiches in the one spot that is leaking. The leaking didn't become really bad until the original sutures were removed. It is believed that the removing of those stiches probably opened the wound some more, causing the excess of fluid. She is on a diaritic to help dry up the extra csf fluid.
They were going to begin giving her food in her tube today, but we have found out that she is going back into surgery tomorrow. This time, to change or repair the central line so that we can get blood return from it. So, we will once again be visiting the operating room in the morning. The cycle seems to never end. We did get to go to church this morning, even though I felt compelled to be at the hospital as her mother. But something inside me said, "What can you do? Sit in the waiting room? She'll be fine. Your dad is there. She's in the BEST hands. God's!" Worship was great. Joel's (my pastors) sermon was a great word. Of course, it dealt with trials and struggles. 1 Peter 1:6-9. The part of the sermon that gave me great comfort was...Trials come to that your faith may be proved genuine...Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith...
It is a comfort to know that my faith is revealed as genuine this side of heaven.
Once again, your comments are a joy for me to read. For those who know Emmett and I, you know our sense of humors. There are some of you who don't know us, but your comments are a relief for us. We enjoy your little comments of "comedic" relief. Everyone is awesome.
As you leave your comments, you are welcome to leave your email address, and I'll add you to my email list. I may also make an email account where you can send emails to us. I haven't decided if I am going to do this yet. God bless you all, and thanks for the spreading of the word. The prayers are spreading across the world.
Here is Ethan at his 1st ball game this past Saturday.











And below is Brittney...She is in blue.

A long day away from the Hospital

Today was a long day away from Ivee. The kids had basketball games all day, so a friend, Catina, and my dad sat with Ivee. Her wound on the back of her head is still leaking some, so they put a pressure dressing on it, and will put dermabond on it (kinda like super glue). It's not bad, but we need to pray that it stops, cause the last thing Ivee needs is a shunt in her head now. Hopefully, we are done with all the surgeries for at least 6 months to a year. We pray so, cause they wipe her out everytime, and she really needs to just recover as much as she can. Chemotherapy is coming next week, and they will be hard. Pray that she will be one of the few who does not get sick from chemotherapy. That would be such a blessing! She is sleeping well, and only really gets fussy when it is close to pain medicine time, or when someone is touching her or changing her diaper. Her diaper rash is looking so much better. It was horrible. It is no longer bleeding. The oncologist will have test results Monday, but today he said that some alot of the result from the bone marrow came back negative, and we will know the rest of that report on Monday. Praise God!!! Many of you have called me and left messages. I got them but frankly have been busy when you called, and too tired to call you back later. Not trying to ignore you. Promise. I love all of you, and thanks for the thoughts and prayers. You are great, and the God we serve is awesome.

After Surgery Number 3

Ivee had a pretty good night last night. Mommy got brave and left Ivee with papaw for the night, while me, daddy, Britt and Ethan went home for a night. The kids are back in school, so we are wanting to try to get back to a somewhat normal existence. When I came in this morning, daddy was already here and Ivee was watching Nemo (her favorite movie). She looked really good, cheeks just a little swollen and reddish. She is sucking on both her thumbs, well, more like naughing on them. We waited a long time for her to be taken to surgery. She didn't have a set time, so it was a waiting game. Around 11:30 a.m., we headed down to pre-op. We found out, after they took her back for surgery around 12:20 p.m., that they needed to add two more procedures. The total surgery time would be between 2 to 3 hours. We got a phone call around 2:00 p.m. saying that her surgery actually started at 5 til 1:oo. Well, she finally came out of surgery at 5:50 p.m.... about 5 hours later. Over all she had the following done: the stiches removed from her head, spinal tap, bone marrow extraction, bone sample extraction, stomach/esophagus binding, opening of sphincter to small intestine, and a gastric (feeding) tube inserted in her abdomen. They did not get to check her central line, like the oncologist wanted them too. We will try to do this at a later date to see if we can get better return blood flow from it. They added the stomach/intestines procedure, cause the oncologist is afraid that once we start chemo and she begins to throw up, that she will aspirate fluid and this could cause fluid in the lungs. Her immune system will be down, so any chance of getting pneumonia would be very bad in her condition. So, the stomach binding and intestines opening will help to stop this from happening. She did great during the surgery, and she is in her room now and still doing fine. Dr. Emran, the oncologist, said that all her test results should be in Monday, and he will also go over the details of chemotherapy treatment that day. We will not be going home before starting chemo treatment. Treatments will probably begin at the end of next week and last 3 to 5 days. By the time we get to go home, we would have been in the hospital for a month. Pray that she heals quickly and with very little pain from the surgery. She was really starting to become more like her old self, and we are sure that she will probably regress. Thanks for the comments, and keep them coming. They mean more than you know. With love, Hope and Emmett

The day before my 3rd surgery

Here is a beautiful picture of Ivee holding my dad's hand post surgery. Isn't it sweet?
Ivee goes back into surgery tomorrow mid-morning for the following: insert a gastric line, get a spinal tap, get bone marrow, get a bone sample, remove the stiches from her head wounds, and check her central line in her belly cause they can't get blood return on it but can push fluids in. The bone scan from yesterday showed that her bones are clear or any growths. It also showed incidentally that her kidneys have reflux. The oncologist said this isn't really anything to be concerned about. It is just something that usually happens in people who have alot of bladder infections.
She had a good night of sleep last night, about 6 hours. That is the best rest she has had yet. And she has been quite restful today. She had a hearing test. Her left ear passed. Her right ear may be affected by the surgery. We won't know yet. We just know it didn't pass today's test.
Her PH test from yesterday revealed that she does have gastric reflux (heartburn). I already knew that from all the times she would constantly spit up on me. So she is on zantac. She is off her antibiotics and no fever has returned. She still has a horrible case of diaper rash, but it is beginning to heal.
She is looking around and reaching for stuff today. That is a great step. Oh, and I forgot to mention that in the middle of all of this, she got her first tooth!
TODAY... she did something we thought we wouldn't see for a long time. She SMILED! Twice.
We truly appreciate all of your comments. They give us encouragement. Paula, thank you for the bit of research you did on her name. Ivee, for those who want to know, is the name of my grandmother, my dads mom, who passed away about a year ago. So her name is very special, just like Ivee is.

2 weeks post 1st surgery

It is 2 weeks post surgery for Ivee. Her head is looking good, and her stiches will come out soon. For those who don't know, her incision on the back of her head starts about 2 inches behind her right ear and travels at a curve down past her neck and shoulders. About 5 inches long. And there is an incision on the top of her head a little over and inch long from the external drainage port they had to put in until her ventricles began to drain the CSF (brain fluid) of her brain like normal brains do. They have done a CT scan of her this past Monday and her ventricles look good. If this continues there will be no need for a shunt (a tube that drains CSF fluid if the body can't naturally do it itself.) I know a lot of my teens out there are reading this, so I want to make sure you are clear. I'll put a lot of explanations in there for you (love you Natalie : )!!!
They have had some trouble with Ivee's central line. They needed labs two nights ago, and they tried and tried to get blood return and couldn't, which is one of the reasons to have a central line... no more sticking. So at 3 am Ms. Ambe (the lab tech) came in and stuck her for blood. (The doctors needed to do blood work to see if the blood transfusion was doing it's job). They got out the door, and 30 minutes later came back in cause the blood they had drawn already clotted in the tube. So this time they stuck her heal instead of her hand. Then after they got as much as they could, which wasn't enough, they tried to get blood return on her central line just "one more time" and of course got blood. After all that.
Ivee is almost at the end of her 24 hour PH test to check the acidity of her digestive system before they can put a GI tube in (feeding tube). More than likely Dr. Powell, the surgeon will perform the GI surgery, will want to do a GI test before the surgery. A GI test looks and sees what the whole digestive system is doing from start to finish.
Today she is having a bone scan and hearing test. She is on morphine for pain and benadryl for itching, and she is on 5 other medications...Antibiotics, steroids, a medicine to relax the stomach, and a medicine to dry up secretions. And since she can't eat, she has TPNs and Lipids going into her central line for nutrition. (those are nutrients and fats)
She had a really ruff night last night, and today her central line is oozing. So the surgeon had to come in and fix it. She and mommy didn't get much sleep.
I have my ups and downs. Most of my downs come at night when I am alone and lacking any descent sleep. The Lord has his moments of reminding me he is still in control, but in my human mind many thoughts come and go. I try to cling to Psalms 40, especially verses 1-3. "I waited patiently for the Lord, he turned to me and hear my cry. He lifted me out of the slimy pit, out of the mud and mire, he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put trust in the Lord."
We are in room 510 at USA. Our room phone number is 415-1510. Sometimes we answer and sometimes we are in the middle of something. We like visitors, but you may need to call first to make sure we are there. She has many test that happen, so sometimes we are not in the room.
Thank you once again for your prayers and thoughts, and for the many gifts and visits. We know we are loved!!!!!!

Beginning week 2

(This is a picture of me my 2nd day in the hospital, before my first surgery. The bruise on my forehead is the only thing I received from the fall)

(This is post first surgery)

(This is Saturday after my second surgery)

Ivee had a ruff night last night. We believe she is in pain, but we just can't know since she can't tell us. The doctor prescribed morphine and it would allow her to rest for about 2 to 3 hours, but then she would begin crying again. The doctor came back in and Emmett was holding her, which after 20 minutes she would calm down. Em just told the doc...I could guess all night what is wrong with her, but neither I or you can know. All I know is she calms down when I hold her, and back before this, when she had headaches and we didn't know it, holding her would give her enough comfort to help her sleep. The doctor agreed and said... well we know you can't hold her all night, so she prescribed morphine and needed. That helped from 4 am to 8 am. The doctor then came in at 8:30 am and told us that Ivee's red blood cell count is low. It should be between 12 and 15 and hers is at 6.9. She was going to require a blood transfussion. Dr. Martino, the neurosurgeon, came into check on her, and we asked what he thought caused her lack of blood cells. He does believe it is the two surgeries she has endured over the last 14 days.
So, as of right now, Ivee is getting a blood transfusion, and reacting to it well. As with all blood transfusions, there is risk of rejection and infection. Problems are usually noticed in the first 15 minutes, and it has been an hour. She is resting and doing well.
Tomorrow she'll have a PH test to check the acidity in her digestive system. This will ade in the decision on her GI (digestive) line to get her food. That surgery will probably be done with all the others will be done sometime this week.
This is what is happening today. I keep a journal of what is going on with Ivee everytime something happens. If anyone want to leave a comment or ask a question just click below to leave a comment. Thanks for your prayers, and keep on praying.

God is in Control

Alot of you already know what has happened to our family these past two weeks, but for the unedited whole story up to this point...here it is... and you'll have to excuse typing mistakes...it is late and this is long
Emmett had been in Texas for two weeks, planning to come home in 6 days. I struggled with Ivee and Brittney's health while he was gone. Ivee had bronchilitis the week before, and Brittney had aches and fever over the weekend that ended with vomiting for two days. I made an appointment for her to go to the doctor and get something to help her stop, so she would not dehydrate. I was a little early to the appointment, so just a moment down the road I stopped at Fred's to go in and get something, I think it was an outfit for Ivee since the weather was getting colder. She was buckled into her carseat and I sat it on top of the grocery cart like I had done with my other two kids when they were little. She was calm and good the whole time. As we were leaving the store, I moved to the front of the cart to throw something in a trash can. As I turned back to get more trash out of the cart, for no reason at all, I saw Ivee and her car seat about a foot from the ground (face down). All of a sudden my baby had hit the concrete face first. I freaked out!!! to say the least. I turned her seat over, horrified at what I would see. As I turned her over, she didn't move. I saw a scratch on her head that began to rise immediately. She then moved and began to cry. I ran to the car, got her in, ran a red light, and headed straight to the doctor's office where two of my friends who are doctors work. Dr. Lynn Porter, one of those friends, came in. I was on the phone with Emmett trying not to lose it. We had trouble getting her to want to stay awake. Lynn said she thought Ivee might have a slight concussion, so she would call Thomas Hospital (20 minutes away) so they would know we were coming.
I drove well, but fast to Thomas. I called Tony and asked him to help me with Brittney, who was still sick and trying to keep her mom calm. Tony called me back on the way to try to calm me down. I finally got to Thomas (30 minutes later). Greg Porter, Tony and Chad, and Angela came in after. Well, skip a few minutes. We got to the back and they sent us for a CAT scan. I stood by her side while they strapped her in. All of a sudden a piece and feeling came over me. Something inside me said, "She'll be fine from the fall, but they will find something else." I watched the monitors as they ran the scan, and I saw something I thought was strange, but then again, I've never seen a scan of the brain before. My friend Dr. Sammy Saleeb is the radiologist at Thomas, and it was his first day back from vacation. He called me in and asked if Ivee had any health problems. I said no. He asked if she could sit up. I said, no and that it had been bothering me lately that she couldn't being that she is over 7 months old, but no one else seemed worried about it. He showed me the spot that I had seen earlier, and said that it shouldn't be there and he wanted to do an MRI cause they are more detailed. Well, we'll make this shorter. We did the MRI, she slept all the way through it. Sammy came and told me that she would need to be transferred to Sacred Heart or USA C&W, and that we would need to talk to a Pediatric Neurosurgeon. Sammy called around and found Dr. Anthony Martino at USA. So, we transferred there. Hours later, Martino came into PICU, and he told me that he would want to do an MRI of her spine to see if anything was in there. He would also have to probably biopsy it to make sure of what it is. It is common of an epidermoid in that part of the head. That is a cyst. That would be the first on his list. Last on his list would be an infection, cause there would be more symptoms.
Emmett flew home in his Toyota Echo from Texas in 5 1/2 hours.
Tuesday they did an MRI, and Martino said it was a little more detailed than the one from Thomas. So he had Ivee scheduled for the 3rd surgery of the day on Wednesday. He would go in an remove all that he could and then biopsy it.
"Whoa...wait...this is all moving too fast!!!" Wednesday came. They took Ivee into surgery at 2:30 p.m. Over 30 people came to be with us during this time, and many people who couldn't called. We were told the surgery would last 3 to 4 hours. 5 hours later at 7:30 p.m. doctor Martino came out to talk to me and Emmett. Ivee had come through the surgery just fine. She had a tumor, that from the look of it favored a PNET. He informed us at that time that she would require chemotherapy, so we knew that from the look of the tumor, he knew it was malignant. The tumor had been wrapped around the nerves that control facial movements on the right side, her right eye, and swallowing. He left the nerves in tack, but they are still irritated, so there would be some problems with these thing. It was hard to hear, but Emmett and I knew God was in control.
(This is about 4 days after 1st surgery)
To skip a bit, Ivee has been doing fine. She had her breathing tube out after just a day and half. That was really good. Her eyes were very, very crossed, and she can't "speak". It has gotten better but she is still hoarse. Her eyes look a whole lot better and she is focusing better now. The swelling is gone, and her wounds look good. She's been tied down to the bed so she won't pull other tubes out, but three days ago, she got free while they were putting a foley in to collect urine. She pulled her feeding tube out. They couldn't get another one in cause her stomach is closed up. So she hadn't eaten any nutrition for two days. She had surgery yesterday to put in a central line so that she can receive TPNs and Lipids for nutrition right now. Yes, this means she still can't swallow. She is taking to the pacifier now, and that is good. We'll just have to wait to do another swallowing test to see if she has progressed any further.
There have been a lot of issues since the surgery, but over all, she is progressing well.
Now for the diagnosis. It took 10 days to get an answer from Pathology. She has Anaplastic Ependymoma. It is an aggressive stage 3 cancer that affects the ventricle and lower back part of the brain, but also arise higher in the spinal cord. Usually kids with this cancer are diagnosed cause of vomiting, headache, and balance problems. This explained the reason she couldn't sit up. Also, it could explain the reason we thought she "Spit up" a lot. There were also times that she held her head funny, as if she was trying to relieve a lot of pressure. The signs were there, but no one would have run a CT scan for not sitting up. You can't ask a baby if their head hurts. So, if she had never fallen from that cart, we would have found the tumor, probably, too late. The surgeon, Martino, said that 2 months from now this would have been a different story with a much different outcome. Praise God she fell. Who would have ever thought I'd praise God for that.
Well, I'm going to try to finish quickly and talk more later.
This coming week, we'll run more test, and soon start Chemo. Dr. Emron, her oncologist is working on a plan, contacting all the oncologist in the North American region in the network. This cancer is rare, and ever more rare in babies Ivee's age. She'll probably be part of a clinical trial.

We covet everyone's prayers, and leave your comments of encouragement. I'll try to update everyday with her progress. WE love you ALL!!!!

Ivee gets the juice

hi daddy, I can breath better now. This is me getting my juice fix. I took it pretty good last night, and slept all night again. i can't wait to see you. ethan and britt sing tonight, so i am going to see them. mommy said she would tape it for you. hopefully ethan will be as funny as he was that other time. you know, after pastor joel came...? while i was still in mommy's tummy...? well, i remember. Love you and see you in 9 days.

It's Been a While

I've tried to update earlier in November but the site was always down...So anyway. The Gift was great. I wish everyone could have seen it. Brittney was completely awesome. We got to preview what the DVD will look like, and it is so clear and the audio is great. We are so glad that we had it professionally filmed.
Well, the family is great. Emmett left this past Monday for a month in Texas (for his job). He'll get to come home for 3 days at Christmas. We miss him alot. The kids are being a help to mommy right now...most of the time.
We have a new addition to the family. This is a picture of Berry. My daughter, Britt not Ivee, suckered her mom into taking her home and "trying her out." She belonged to an older couple that was moving to Europe and couldn't take her with them. They were going to put her to sleep, cause they couldn't bring themselves to take her to the pound. A friend of mine stopped them from doing that and promised that she would find her a good home. She is a sweet dog. She's a 9 year old Terrier, so I warned Britt that she is older and she could live just another year or five years, and that she would have to be prepared for that.

Here are some pictures of Ivee. She is 7 months old today. In the second picture she is in her crib watching T.V. She loves Nemo. My other kids watched T.V. also, but nothing like Ivee does. She is very attentative. She just takes everything in.


I'm going to try to get her to watch another movie other than Nemo though. I seriously have the whole thing memorized. I think it is the bright colors that draw her into that one.







These are some pictures from the play. You'll have to forgive the quality. They are shots from the DVD. I would let it play through my computer, pause it and take the picture with a digital camera. So, it's truly a picture of a picture. Here Ernie and I are preparing the set. We made a stone wall out of foam. It was messy and fun.