Young Lexi and her Granma Connie need our prayers! Need a miracle!
When I first became a grandma, I didn't actually want to be called that. I thought I was too young at 46 and besides, that was my mom's name now...and I guess I was just too vain
.....anyway, I googled and found that Nona, Noni and Nonni were Italian words that some used for grandma. Of course, I am not Italian, but it was perfect for me. I put an "e" on the end and changed it to "Nonnie." That was almost just like my real name, so problem solved! Though it is what my grandsons call me, Lexi had a hard time saying it after her surgery at age two. She then called me NaNa. You may remember the video of her saying "NaNa" even after the stroke. She still mouths it every now and then, but not so much anymore, unfortunately. When I saw this t-shirt at Old Navy, of course I had to buy it. I know she loves me. This photo was taken today, June 9. 
- Alise- Evonposted 11 years ago
0 I've been on Facebook so much, I keep going for the "Like" button when I read a reply. I truly "like" them all. We have wonderful news in that Lexi's MRI got moved up to this Thursday, over a month earlier. She couldn't make the last one because she was sick, so she hasn't had one in months! I was ready to jump up and down on somebody's head down there at the hospital. My daughter is not forceful enough -- and I have a bad reputation, lol....but Kara did it without me! Here is the sweetest picture of Lexi, taken today. Unfortunately, she can't hold her "lipsticks" anymore, but as you can see in this picture, she is still getting her manicures. She loved them!
Good for Kara. She's forceful enough. Got the MRI moved forward.
Lexi looks peaceful. Hope she's having happy dreams.
- Alise- Evonposted 11 years ago0
We got the MRI report from the radiologist, but have not spoken to the doctor about it. It is not good, we knew it wasn't going to be great, but we were hoping for better news than we got. It appears that the tumor has continued to grow (it is now 6 by 7 cm) and that there is some fluid build-up. She has had a shunt in place since her stroke two years ago. It is still working, but either there is more fluid than it can handle or it is going in a different area. For those who do not know, a shunt is a pump that was placed in Lexi's head. A tube runs from the pump down to her stomach area (not sure exactly where...) and that is how excess fluid is drained from her brain.
The doctor is out of town, but wanted a meeting next week on Wednesday. The nurse said that Lexi might begin to have some severe issues with either pain, fever or responsiveness and if any of that occurs to get her to the ER right away. I am torn on that one as I do not want her to die in a hospital. I want her to be at home being cared for by the people she loves, including her nurses who work 16 hours a day. The newest has been with us over 8 months. Lexi is so precious that anyone who comes in contact with her cannot help falling in love with her.
Lexi has had some digestive issues after my daughter changed her formula to soy. Her stomach hurt and we knew it. Finally, she went back on dairy and things are much better. I mention that because she did show us that she was in pain in her stomach. She was drawing her legs up and she was restless. There has been no indication that she is in pain anywhere else. She just doesn't seem to be. As long as her tummy is not hurting, she seems to rest pretty well. I pray that she will continue to remain pain free. That is my number one concern.
I do not want her to suffer with pain. She has suffered enough with being a prisoner in her own body and back to square one -- not able to sit or even turn over. Our poor baby has suffered enough without the pain, that is for sure.
At this point, I just want her to go peacefully. That is my prayer and I hope, yours too. Though she has been with us much longer than anyone ever would have anticipated, it has not been on the terms we've prayed for, which is a recovery. Please pray that she will pass peacefully. Of course, I am not ready to let her go, but that is something we will never be ready for.
Here is her latest picture. I took it this evening. The night nurse, Kelly, and I were talking about how beautiful she is and though I can't remember who said it here, someone commented once on how her skin seems to glow. She is a beautiful baby girl.
- Alise- Evonposted 11 years ago0
Connie, you sound so much like me it is spooky.
One of my adult daughters has been going through her own life-threatening medical situation for the past couple of years. She was also timid at the beginning, but is now confident enough to challenge the doctors herself. She still has me by her bedside whenever she's in hospital just in case she needs my backup, but during the last visit I couldn't help but notice the apple doesn't fall far from the tree. She's sounding more and more like her mother.
When our kids are young we think life will become much more simple and less stressful when they become adults. Doesn't all ways work that way though, does it?
I am so pleased to hear you and Kara are not having any problems. You had me worried for a minute. Keep the team strong.
Sadly, there's always so many 'what ifs'.
- Alise- Evonposted 11 years ago0
Hi all, this is the dreaded update....we already knew a bit about the MRI because we got the radiology report. Still, it is hard to hear it from the doctor's mouth. She said that the tumor has pretty much taken over the brain, pushing up toward the top of her brain and down to the bottom to press on the base of the spine -- basically that the brain is damaged beyond repair and now it is time to let her go. Unlike the nurse's instructions to take her to the hospital if she appears to be in severe pain, feverish or totally unresponsive, now the instructions are to keep her at home, make her comfortable and let her go.
I asked several questions about pain, because, as I have posted, she really doesn't appear to be in pain other than her stomach bothering her (which lets me know she can feel pain). The doctor says that there is not much pain involved in brain cancer compared to other types (at least Lexi's type -- ependymoma) because there are not pain receptors in the brain. Usually if there is pain, it is caused by the pressure of fluid build-up and Lexi's shunt usually takes care of that. We are grateful for that, but the doctor did give orders for morphine based on severity of pain, different doses for moderate, strong or severe pain. That was a relief to me since I didn't want her to suffer in pain while trying to get ahold of a doctor if her pain level went through the roof some night. I also wouldn't want to give more than the prescribed dose. That would be too scary for words there.
She doesn't have a time frame -- probably not days, but weeks though, she said. One, two or twelve -- Lexi has lived years past one or two previous estimates already. Kara was resigned to the fact that she would probably take her off the chemo after speaking to the doctor. Obviously, Lexi had her last dose last night.
The one last thing that I wanted was to find out how Lexi's illness has affected the study of Ependymoma treatment (the type of brain cancer that Lexi has), either for the doctor or just in general. I found out that Lexi's case goes into a database so that they can glean information on future treatment of Ependymoma. I was very happy to find that out. Kara had signed for that previously and if she told me, I do not remember. Also, I hesitantly brought up the issue of other things that we could do to further Ependymoma research. To put it bluntly, we can leave her brain to science. The tissue would go to MD Anderson (most likely) or another research hospital that deals in childhood brain cancer. Since I have never mentioned it previously to Kara, I don't know where we stand on that issue. I sincerely hope that she considers it. The closer we get to the end, the more urgently I feel the need for Lexi to leave a legacy after she is gone. She wasn't able to grow up and create that on her own but she has gone through more on this earth -- and with so much grace and resilience -- than many people that are a lot older than her have faced. I do plan to write about Lexi's battle with Ependymoma here on Hubpages so that, hopefully, other parents looking for answers can make more informed decisions about their child's treatment plan. I have a lot to say, but I just can't say it quite yet.
Here is a picture of Lexi with one of her very loving nurses, Sue. Sue has been with us for about 18 months. You know she fell in love with Lexi the first day she worked with her and she has only grown more attached since.
- Alise- Evonposted 11 years ago0
Lexi is just amazing. She is hanging in there and really, there has been no real change since the last time I posted. A lady on Lexi's Facebook page made a comment that Lexi really looks very healthy for someone that is deathly ill and that is true. She looks great under the circumstances. She hasn't opened her eyes for a long time, several months even -- except for today. She opened them about 3/4 of the way, but just for 20 or 30 seconds. She mostly sleeps, I think, but since she can't talk or really communicate, there is no way of knowing. Every now and then, she still says "NaNa," (silently) which makes me know she isn't in a coma.
As I posted last time, at that last doctor's visit, I had asked the doctor about what the procedure was to help along Ependymoma research by donating tissue from Lexi. From that day to this, I have never brought it up to my daughter, but she briefly mentioned the other day that she was finding out what she needs to do for when the time comes. I didn't go into it, but I am happy that she is considering it. It is a hard decision, but I think it is the right one to make. I am hoping that Lexi's suffering doesn't have to happen to too many more children before they find a cure.
Here is a picture of Lexi with another loving nurse, Rachel. Rachel is crazy about Lexi and started with Lexi about two years ago. She has a full time job elsewhere, but continues to work with Lexi when she can because she loves Lexi so much. Rachel took this picture -- and a million more that I won't post here, lol. She also made the borders for them. Rachel is like an overgrown kid. She wears Hello Kitty shoes and carries a Hello Kitty cup because we have Lexi's room decorated with some Hello Kitty decor. Lexi was Rachel's first pediatric patient. Rachel was ecstatic to get to work with Lexi as her goal was pediatric nursing. We love her because we know she loves Lexi so much, as do all the nurses actually. Lexi is just a loveable little girl.
Thanks for the update, Connie. Lexi has extraordinary strength. It must be in the genes.
You hit the jackpot with her nurses. It is clear that Lexi won their hearts. Thinking of you all.- Alise- Evonposted 11 years ago0
Lexi has taken a turn for the worst today. Her body temperature plummeted to 91 degrees. After three or four hours being covered with blankets, socks, pants, shirt, jacket and beanie has risen to 93 degrees. It appears that the end is near. Of course, we knew it was coming, but that doesn't make it any easier for me to deal with. Please pray once more for my sweet baby girl, that she stays pain free and, if she can, please ask for God to just give me one more day....
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