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.