Entering Week Three

You all wouldn't believe how well Ivee is doing. Within the last two weeks, she's really starting to do some sitting on her own. When I push her in the stroller, she sits up to the front on her own. She'll begin occupational and physical therapy this week. The therapist asked what I really wanted her to achieve. My answer, or course, is that she could sit up on her own with no assistance and for a lengthy amount of time. And also, that she could get to a sitting position on her own with no help from mom and dad. Sitting leads to crawling, pulling up, and then walking. The therapist completely agreed with me, so maybe we can get closer to that before we leave here in August.
Friday... the nurse anethesist had a talk with me. She said they had a really hard time knocking Ivee out Friday for radiation. They had to give her more medicine than they would like too. You can tell they did something different, cause when she came out of sedation...she was just totally different. She was grouchy, irritable, and wouldn't be still...throwing herself all around like a greased pig. She was mean the rest of the day. So on Monday, we are going to try to sedate her later in the day, closer to nap time to see if she won't fight to stay awake. Pray this works. Well, I'm hungry...gotta go.

Not "Emmett" Sick anymore....

Update on the family....True, Daddy drove up and surprised us on Monday...about 5 pm. The front desk of the "house" called and said we had a visitor. I knew it was either Emmett, or my dad drove over from NC, or perhaps Joel and Janet found time in their vacation to drop by. It was the first. He was suppose to come up later that week, but came up on Monday instead. We are all missing Ethan very much, and he is beginning to miss us as well. Daddy will probably look at bringing him up next weekend.
Update on Ivee radiation treatments... She is still taking radiation very well. She is making new boyfriends everywhere. Dr. Bikhazi is one of her favorites. He is a funny anesthesiologist in the radiation department. You can tell he is a ladies man from the Mediterranean. I think she thinks he is a fun grandpa, since he can act alot like Ivee's real grandpa, who she is probably missing a bit right now. I know he is missing her.
Update on her test...She had a scope scan of her vocal chords. They went through her nose, and we had to hold her down. Didn't LIKE IT!!! Well, anyway, her right vocal chord is paralyzed, so she only speaks with the left one right now. Dr. Thompson who did the scan also had a vocal chord paralysis, so he knows how Ivee feels. He has a problem with aspirating when he drinks also. His will never heal, but he has alot of hope for Ivee. 1. Because of her age. 2. Cause she coughs up her secretions on her own, trying to clear her throat and make her larynx clear. 3. Cause she has already shown great improvement (according to me and Emmett) since surgery has taken place. (Recall....after surgery she could not speak or swallow AT ALL for at least a month). She has come a long way. Dr Thompson wants to do the scan again in 6 months to see if there is any progress (improvement).
We are waiting for our occupational and physical therapy visits, so I need to get of the computer. They will call any moment. I hope to hear from more of you, and are eager to come home. I miss and love all of you.

ready...set...go....week 2

We are currently in the surgery waiting room this morning. Ivee is in radiation right now, then they will transfer her upstairs and put in a subteranious port (under the skin, on the top of her chest) and take out the central line. She has responded really well to the radiation. She is feeling alot better, and you can see the physical evidence of this from her hyperactivity. She is so crazy. She has friends all over the hospital. We have meet two people so far from our "neck of the woods." Maggie, a radiation nurse, is from Theodore. Chad, I believe he is in training in sedation and radiation, is from Silverhill, and his brother has a law office in Bay Minette. Also, Aimee, one of our recovery nurses was married at the Grand Hotel and was surpirsed when I told her how much damage was done by Ivan, and how it had to be totally gutted and redone.
I must confess that Brittney and I are becoming home sick. I'm sure Ivee is too. Emmett says that I am not home sick, I am "Emmett" sick. Ha, ha.
We are finding our way around Memphis. It isn't too confussing, just really congested in some areas. And if you want to go anywhere around the hospital area to see something or eat, you have to pay for a parking garage. So, I have come to one conclusion...I do not want to live here! And I'm not sure if I want to visit here again : ) I think I will have my fill of Memphis beofre this is over.
We have now moved to the Ronald McDonald house. We have our own phone number and can receive mail there much more easily. When I get back there today, I'll post those for you on here.
I'll let you in on more later. Thanks you everyone.

Mid Week

Hello to everyone. I am trying to find time to blog. Keeping busy is not the problem so far. We have full days everyday. They said it would slow down soon. I''ll believe it when i see it. We just got back from Ivee's swallow study. She didn't do so well. Not sure if the radiation is the cause. She has been baned from liquids by mouth until radiation is over. She will not like that, cause she likes the sweet tea and apple juice. They are replacing her port up here cause the old one from 3 weeks ago has come unstitched. the surgeons said they could restitch it or just put in the under skin port. Dr. Merchant and I talked and we both decided to go ahead and do the new port. It is easier to deal with. Alot less complications. Hopefully we won't have to replace it. She can get in water with it. (of course the g button still doesn't help. maybe we can cover it somehow so she can take a real bath).
So far I haven't had alot of time to miss home. I find myself getting emotional during the day when I see the other kids. Some look really good, and then there are others that have just had surgery and their scars and issues are so fresh. Just reminding me of Ivee 6 months ago. We've, well Britt, has made some friends. One is a little girl who lives here in Memphis. Her story is that she was in the hospital some time ago, she received a blood transfusion that gave her a stroke, so now she is wheelchair bound. She also made friends with a girl who's brother is having radiation. And then she has played and spoke with a little boy who's sister had a brain tumor and is having radiation. They are from Indiana and are Amish. I've seen quite a few Amish families here. I've seen people from all cultures and languages. Many can't speak English.
I am becoming accustomed to watching them put Ivee under sedation everyday. It is a little creepy, but hopefully it will become easier. She fights it tooth and nail. Waking up from sedation yesterday, she was a "mean" drunk. I was trying to feed her, and she wanted to play with her g button by pulling on it hard. She didn't like being scolded for that I can tell you.
I am still at the grizzly house here, on the waiting list for Ronald McDonald house. Should be able to get in by the end of the week we hope.

Our 1st Day

We are back in our room at 4:00 pm after a long day of stuff. I had to stop feeding Ivee at 4 am cause of sedation, so she is just getting some food in her belly after 12 hours. She was quite humorous after waking up this time. She was a "happy drunk." She keep trying to function on her own, and just couldn't quite pull herself together.
I had a meeting with the radiation oncologist, and he gave me some more info about her last MRI. After reviewing it with other doctors here and comparing to her last film, there is a remnant of tumor at her brain stem. He doesn't believe it is new growth. He believes it is the piece that was left there after surgery. He said that different MRI machines can pick up things that others don't. So, Ivee is not "tumor free" as we thought, but she still doesn't have any new growth. Ideally the doctors want all the tumor resected before radiation, but he said this piece is nothing that they want to remove by surgery. Plus, we all know that it was left there by the brain surgeon back home, cause he didn't want to chance damaging the spinal chord.
Also, the doctors had some concern about Ivee's ventricles. They have increased in size since her last MRI. And of course she still has the fluid on her wound site. After consulting with one another, the want to do a lumbar puncture to rule out anything that might be causing the increase in size of the ventricles.
Okay, now the radiation. The short side affects are possibly... nausea/vomiting/ headaches/ tiredness / hair loss in that area. Long term affects could be ... hearing loss in the right ear / balance issues / hormone problems / learning disabilities and some other possible issues that are rare. She had a hearing test today, so we will know what is going on with that before we really get going. She has a swallowing test Wednesday.
They will continue physical and occupational therapy here. She will also see an eye doctor.
I'm sure I am missing something. Just leave comments if you have any questions. We can receive mail here at St. Jude. I'll get the address and post in on the blog as soon as I can.

The Day Before

Well, it is the day before we leave for Memphis. After much discussion and going back and forth, Brittney is going with us instead of going to NC with grandpa. She will be a big help for me, and she will keep mommy company. Ivee does start radiation on Monday. It will be a full day of labs, meetings, xrays, hearing test, and radiation therapy. I hope everyday isn't like Monday! Many people have prayed over us today, and I am not too emotional. I am tired, but I think it is more so cause I know how much I have ahead of me. I will have my laptop with me, and will check my email constantly. I will look forward to visits from my husband, son, family, and friends. Many have spoken an interest in visiting. I know many hospitals there give discounts for people visiting people at St. Jude. I don't know if i have posted before, but if all 5 of us are there, we still can't stay together cause there is a strict 4 person per room rule. I understand that you have to have limits or people will abuse the system, so it doesn't upset me.
Thanks for your thoughts and prayers, and I will be thinking of all of you, and waiting for your comments. God bless you all.

Home and Happy

Ivee had her last procedure Friday at about 1:00 p.m., so we just decided to drive home. We got home about 9 p.m. So far, everything on her MRI came back negative for new growth...again. Hallelujah!

To answer some questions from comments.
1.All people can only have radiation once. From science, they have discovered that this is the amount that the human can handle. Remember, radiation is nuclear medicine.
2. Possible side affects are nothing like chemo. She will gain strength and become much more active. Nausea and vomiting are still possible side affects, but they are less common, esp. in patients that recieve radiation to the brain. The doctor said I would be amazed at the progress she will make, and how much better she will feel.
3. No......there have been no Elvis sightings. :)

Well, I should know more about things Monday, so I'll post when I know more. Love you all>

First Meeting in Memphis

We arrived at St. Jude yesterday about 4:30 pm. Ivee was good the whole way up. (TV helps) Everyone is very friendly and organized here. All the buildings are in a gated area with guards at every entrance. Where we are staying this time is on campus, so we just walk back and forth.
Today we meet with Dr. Thomas Merchant (The Chief Radiology Oncologist) here at St. Jude. He went over the typical effects of radiation treatment. One that we didn't know is that Ivee can only have radiation once. So, this is it. She'll have radiation for 6 to 61/2 weeks, 5 days a week. Each time will take about 45 minutes. This is to sedate, give radiation, and then wake up in recovery. We will have a planning scan tomorrow, where they will do what is called a test run. They will ta too her head with pin point marks so that they can radiate in the same place every time. Dr. Merchant wanted to being treatment next Wednesday, but after discussion (and my look of need) Ivee and mommy will return to Memphis Sunday, June 24. So I'll have one week at home before I come live in Memphis for 7 weeks at the Ronald McDonald house here. The RM House is only 5 minutes from the hospital. So, I won't be home for long once I get back, and I have ALOT to accomplish.
The great thing is chemo is over, and the Doctor said that as time progresses, Ivee will become more and more energetic and lively and she will begin to catch up physically. In her case, radiation will have no effect on her physical development. Learning skills and development might be affected.
Well, I don't know what else to tell right now. Don't know much more. I know Memphis is big, and me driving in it seems a bit overwhelming, but Emmett and I got out tonight and found somethings.
If you have any Questions...blog me please. I would love to answer any you have. God bless, and pray all goes well until we come home Saturday.

Our first trip to Memphis

Here are some pics from Ivee's birthday party. Sorry I am late getting some of these up. She, of course, had a Nemo cakes, ballons and decorations. She couldn't eat the cake but she did stick her hands all in a piece. And then she rubbed her face and head with her hands, so she had blue icing all over her. As you can see, she is also sporting her Nemo ensemble that her sister picked out for her.

Well, tomorrow we leave for Memphis to go to St. Jude's Children's Hospital. (Just Ivee, Daddy and Mommy this trip) We will return on Saturday. We are driving, cause Emmett's plane ticket was going to cost way too much. More than we had anticipated. Wednesday we meet Dr. Merchant, the cheif of radiology oncology there. Thursday is her planning scan. This is where they will do a test run to see what they need to do during treatments. Friday she has a MRI. So, we will have a busy week while we are there. The home we are staying in has WiFi, so we will have internet access while there. So keep in touch. Thanks for the prayers, and we will miss everyone.

Chemo week

(Posted are some pics of me in my hospital stays)

We came in to the hospital yesterday for chemo. She didn't sleep that well, but it was not as bad as last time when she received this drug. They are letting us go home today, and for the the other two doses, we can come in outpatient to the "USS Hope". The Hope is a specially designed place in USA hospital for kids who have to under go chemo for cancer, blood transfusions for sickle cell, or other treatments. It has a under the sea theme. There are 10 computer stations where you can watch t.v. or go online. They have special treatment lounge chairs. There is also a salt water aquarium with Nemo fish...clown fish, dory fish, an eel, and other fish that you see in finding nemo. I know I have spoke of the Hope before, so I wanted you to have an idea of what it was. We will keep her home the rest of the week until we leave for Memphis next week. We have to go up there for consultations and scans.

UPDATE

Here is Ivee this past Tuesday. She is sitting by herself. It's not for very long, but she is doing it. UPDATE
She woke up Wednesday morning, and the whole right side of her chest was extremely swollen. The fluid had built up in her chest over night, cause the line had completely come out of the vein. The surgeons, who we had still yet to see, came up and realized they had no choice now but to perform some kind of surgery that day. They had us scheduled for next Monday (which we didn't even know was scheduled). So, they decided to put a new one in yesterday. They took her back at 5:15 pm and she was done at 8:15 pm. Daddy stayed with her and she did well that night. So, this morning we were finally discharged from the hospital. She is home now, and so very happy. She could have gone home this past Tuesday, but the line (and no available surgeon... still) kept us there until today. So, the not now so aggravated Foleys are home. We have to go back in next week for our last round of chemo.
Okay, the new news. They will not be able to do radiation in Mobile, unfortunately. We will be going to St. Jude's in Memphis in July for radiation. Mommy and Ivee (and I don't know if anyone else can go) will be gone for 6 to 7 weeks. Two weeks from now, after chemo, we will fly up there for evaluations and consultations. So, life is about to get really crazy for us. God didn't work it out for us here, so we hope there is something that she needed at St. Judes, and God knows what she needs...so once again we are not in control...and his ways are higher than ours. While we are gone, daddy is going to try to get the upstairs started. Hopefully he won't kill himself.
Well, that was a quick note and I'm out.

Don't get upset but...

Okay, so I didn't blog it, but we had to come back into the hospital 1 day after we got out. I just didn't feel like blogging. I feel so repetitive. It becomes mundane. She had another fever, and her central line port is coming out AGAIN. So, surgeons were out last week and today for the holidays. They will be back tomorrow, and we will have another surgery then or Wednesday. Then we'll be back in next week for the last of the chemotherapy. Ivee is just now starting to let us move her without her crying. She is rolling over again, and pushing up, so that is a good thing. So, we'll go back into surgery where she will be in pain again and congested. Oh, the cycle never ends.
Well, I have my days of discouragement, but I never loose my hope. Today I'm just tired of being here, and so is she. There are just so many things you can do in a 12 x 12 room. I'm fine, I'm not going to go postal, I'm just one of those people who likes to be free. I need stuff to do. Laundry and dishes look great right now!

Still here

Well, we are still in the hospital. They wanted to keep Ivee one more night for observation. She is really hurting. If you move her neck, she just cries. My poor baby. I think she is tired of being here too. She just needs to go home. Emmett's back and arm are pretty sore from the accident yesterday, but he says his neck doesn't hurt as bad as he thought it would.

It's Monday

Yeah, it's Monday alright. Ivee had a pretty good weekend until yesterday night. She had a fall from her crib (about 3 1/2 feet). She is okay, but her head is a little swollen and bruised. I think she may be a bit sore also. Emmett had brought the kids up to the hospital to see me, so they were in the room when it happened. Ethan was okay, but Brittney took it pretty hard. So did daddy, cause unfortunatly, he is the one who turned for a moment and didn't put the side of the crib up. He felt so horrible, but she is okay. She slept pretty rough last night, just waking up alot. So, that is last night. This morning Emmett calls me at about 8:15 am. He was driving to work and 1/2 way to Mobile, he was rear ended, and the back of the car is pretty messed up. He says he is fine, but his neck and back will probably hurt him later.
Well, hopefully things will not continue on this way, and Ivee will get to go home today. We shall see. She's crying now, gotta go.

Til Monday

We are stuck here at the hospital til monday. She has to recieve iv antibiotics, and the medical supply place doesn't rent equipment on the weekends. So, stir-crazy has a new meaning. In a hospital room, there is no "room" to "stir"! She is doing much better though. The blood transfusion really helped to bring her strength around, and her color is better. Thanks for the prayers.

Still here

We are still here at the hospital, and probably won't be released until tomorrow or Sunday. Ivee has a bacterial infection on her G-button. So we are fighting it off with the antibiotics. She slept a little better last night, but was very nauseated. The surgeon is coming to change out her button today, and give her a longer one to help stop the rubbing. She is ready to get out of her, and so am I. Well, anyway, that is all.

Ivee update

We are still in the hospital. Ivee has a bacterial infection. Her white blood cell count is up, but her hemoglobin is down. She will have to have a blood transfusion. She is pale and weak, but in good spirits. Pray all goes well. She should feel alot better once she gets the transfusion.

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