Surgery success!

Kera had her eye surgery on Thursday.  She was very scared about her first surgery, and she had it in her mind that she would be awake and feel them cutting her eyes to fix them.  I'm sure I've explained to her that she would be asleep, but obviously I am not trained to explain it so that kids understand, and luckily the child life specialist at primary childrens is much more capable of doing so.  Once Kera understood that she would be in a deep sleep, and after they put the mask on she would fall asleep within 10 seconds and she would wake up and it would be all over.  She kept asking, are you sure I will be asleep?  What if I wake up and they are not done?  So she explained that the Dr. Welch (the anesthesiologist) main job was to make sure she did not wake up until it was finished.  :)  After she was assured that she would definitely be asleep for it, she went more willingly with the nurse when it was her turn for the surgery.

Dave and I waited for the doctor to come in and tell us how things went, for a long time it seemed, but really it was probably only an hour or so.  Her doctor, Dr. Dries, came out and told us that the surgery went perfectly. He said it went very well and that he didn't expect to have to do another one.  I was very relieved to hear that.  He said we needed to give her drops 3 times a day for 10 days and to come back for a visit in a month.  

After Kera woke up from surgery I went back to be with her.  When I saw her she was laying there with her eyes closed and she would lay there for a second and then say ouch, my eyes!!  I tried to calm her down while the nurse gave her some strong pain medicine.  She really wanted to open her eyes, but of course that wasn't possible.  We put a washcloth over her eyes so she could keep them closed easier.  I was thinking they were going to put a bandage on her eyes, put they didn't.  We waited there at the hospital for awhile, and they gave her some more pain medicine so we had to wait another hour for them to check her out of the hospital.  When we got home she rested and had on and off pain.  The next day she really wanted to open her eyes.  It was so hard for her to not be able to see!!  She also said her eyes itched and felt sandy.  I cannot imagine how that must have felt.  Later the next day after we keep the wet wash cloth off for awhile and I wiped her eyes with a wet paper towel several times to get the stickiness out, she was able to open them up and see a little bit.  She kept them open longer, then the next day, Saturday, she was able to keep them open most of the day.  Today she was able to open them all day, and hasn't complained much about pain.  Her eyes are still red on the edges, especially the left eye.   She also has a hard time moving her eyes without it hurting, so she mostly looks straight ahead.  She was able to get up and move around a lot more today though.  She even was able to play the disney scene it game with my parents and sister and our family while they were here for dinner and to visit.  My dad made Jacob a mask for his school wax museum where they have to dress up as Greek Gods.  He has to dress up as Anubis, the God of the underworld who also has the head of a Jackal.  Yeah, I wasn't about to make a Jackal head, so I called my creative dad for some help.  My mother in law is also going to sew his robe and kilt.  Thank goodness for talented family members who can help me!! 

Things are looking up for Kera lately, her eyes are straight now, and I'm hoping that will help her feel better.  She's also doing good with the regularity and I'm continuing the miralax.  There was one fallback tonight when I had recorded a show about the cancer centers of america.  She asked why I had recorded that show, and I told her I wanted to learn more about cancer.  She asked if what she had was cancer, and I told her that we really couldn't be sure if it was because we cannot remove the tumor and have it biopsied.  I really didn't know that the word cancer would have such an effect on her.  Doctors have used the word cancer to her and about her having it before, but she really didn't think that she had it.  If this word cancer is such a scary word for her, I would rather her not think that's what it is, and just stick with the term tumor.  She said kids with cancer are bald and have to wear a mask.  I know that this is all from the chemo that they take, and I told her we don't have to do chemo and she doesn't need to wear a mask.  She said that some people with cancer die, and that was really hard for me to know what to say to her.  I do not want her to freak out and worry about this right now.  I want her to focus on recovering from eye surgery and take it a day at a time, but when she tells me how hard it is that she has a tumor and that the doctors don't know what to do to make her better, and that there is always something new that happens, like her eye going crossed, or having to do surgery, or her cheeks getting puffy, or radiation, that it's so hard for her.  She hates that she will always have this tumor and that she will never know what is going to happen next.  Don't I know it!!  I don't want her to worry though.  I am the one who should be worrying about this, not her.  She said, "it's my tumor, I need to know all the facts.  It's just that it scares me when I don't know what might happen to me.  And then we have to do something new, or that the tumor might come back and do more damage."  She is having to grow up so fast and I just want her to stay her little innocent 8 year old self darnit!!  It breaks my heart to have to see her go through so much!!! 

 There is a girl at school that she was good friends with last year, and the girl just loved Kera, but she would sometimes be mean to some of the other girls, and Kera knew this was wrong and it bothered her, but it also was nice that the girl liked Kera so much and was always wanting Kera to play with her and do fun things together.  Well now since Kera has gotten sick, this girl doesn't talk to Kera anymore and doesn't want to have too much to do with her, but she is nice with some of the other girls.  Kera said, I'm those other girls now mom.  Kera has never been faced with anything like this before.  She has always had an easy time making friends, and every girl always has wanted to be around Kera.  Now she is "different".  Many kids are still nice to her, and she still has friends, but maybe now Kera is experiencing how it feels to be those other girls who aren't always chosen first to play with at recess, or invited to all the parties or whatever it is.  I know this is hard, but I know she can also learn a lesson from it.  I hope she will be able to endure all of the things that come her way well, and that she will always know who she is and how special she is.  After we talked and she cried tonight about possibly having cancer and talking about the scary things with this tumor, I told her that she can always pray for comfort and she can get help from Heavenly Father.  She said she knew this, but that it's not always easy because Heavenly Father and Jesus aren't on the earth and sometimes she feels alone.  I am so glad that she was baptized and that she has the gift of the Holy Ghost to comfort her when she is feeling down and alone.  She wanted me to read her some articles from the Friend and the scriptures with her, and after we did all of that and said a prayer together, she said she felt a lot better.  :)

*I am including some pictures we took in September when we went on a family hike.  I love these pictures.  They make me smile :)

After the hike Kera and Michael went to one of our neighbor's 

houses to ride their horses.  Over the summer they rode the horses that we had 

in our back pasture that we rented out.  They loved riding them,and now the horses

 aren't there anymore, so I'm glad they were able to ride our 

friends horses that day when Kera said she really wanted to ride a horse :)

Thank goodness for out of pocket maximums!

With all of the doctor appointments and procedures we've had done for Kera in the past few months, one thing I am grateful for is our max out of pocket for our insurance, and after this last MRI I'm sure we are just about there.  I can't imagine not having any insurance since seeing the bill that was sent to our insurance for the 6 week radiation treatment was about $56,000!!
Now that we've about hit our max, I'm hoping that any injuries, surgeries, or ER visits will happen before January 1st, as it will all be covered 100%.
As I said in my last post, Kera had four doctor appointments last Monday.  The first appt. was a follow up appt. with the radiation oncologist.  He was very happy to see the large amount of shrinkage of Kera's tumor.  I asked him about the possibility of re-radiation.  I felt like she had such success with the first round of radiation that it would seem logical to try to re radiate and shrink more of the tumor.  Unfortunately, the risks of re-radiating an area as precious as the brain, especially in the same area of many of the nerves and muscles that do so much to sustain life, makes it unlikely to try to re-radiate.  He said it wasn't a complete impossibility, but it would be very low on the list of things to try.  After we saw him we went to the psychologist that works in the oncology clinic, Dr. Paul.  He was very friendly and he made Kera smile and laugh a few times, so that was good.  He doesn't think that the problems Kera is having with the nausea and things are all psychological. We discussed it being a possibility with our oncology dr. at our last visit. Dr. Paul thinks that she is really experiencing physical symptoms, and doesn't seem to exhibit a whole lot of psychological trauma or red flags.  I also tend to agree with him.  I know that she does experience some triggers and smells that she associates to radiation treatments, but I also think she is suffering physically.  When we saw the homeopathic doctor, it sort of confirmed what I suspected, which was that she was suffering from constipation, along with the nausea.  She showed me some massage techniques that I can do on her stomach to help with nausea.  She recommended sea bands, the bracelets that you wear on your wrists, ginger pills or tea, carnitine (which is a supplement that helps restore the body and the immune system) and a probiotic.  She also made a little diffuser with a grapefruit scent that she can smell whenever she is somewhere and smells something unpleasant. Back to the constipation, I knew that it had been awhile since she had pooped, not since the previous Thursday in fact, and so I also started giving her some miralax consistently.  I had been giving it to her for the past few months because when I saw the urologist for her frequent UTI's, she suggested that Kera was having a lot of constipation and that could be contributing to her UTI's.  So I was giving it to her, but not consistently, especially after all this other stuff that we've been dealing with.  Since the dr appt. Monday, I tried several things to get her to have a bowel movement.  I gave her miralax Tuesday and Wednesday morning, and still no poop.  Then Thursday I started to get more aggressive.  I gave her a suppository, and nothing happened.  Then I tried an enema, and finally the next morning (even though on the box it said within 1-5 minutes) she pooped! I know she would just love me sharing all of the details, but it was really worrying me, especially since it had been over a week, and the last weeks b.m. wasn't even soft.  After the enema she has pooped each day with the miralax, thank goodness!  She is still not wanting to eat much, and still having some nausea, but I'm hoping to see an improvement with that soon.  Another reason she could be suffering from nausea is that when we went to our last dr. appt., the opthalmologist, we found out that Kera is suffering from double vision, and that both eyes, not just the right eye, is suffering from esotropia, or the eye wandering.  He told us that he recommends she have eye surgery to fix both eyes, and that it has an 80% success rate.  I was very excited that there was something we could do for her to fix her eyes.  We scheduled her surgery for this Thursday the 24th.  I am still waiting to hear back from Dr. Bruggers our oncologist to get her go ahead, but if all is good we will do the surgery.  And as I mentioned before, we are just about at max out of pocket, so it will be covered!!
So now that I've given all of the details of doctor visits, I want to say that life is still a challenge every day, but I continue to feel uplifted when I read my scriptures, ponder on the words of the Lord, and take time to let the spirit speak to my soul.
Today I was reading a conference talk by Robert D. Hales, one of our church's twelve apostles.  It is titled "Waiting Upon the Lord, Thy Will Be Done".  Here is a link to the talk for anyone who may want to read it. I love it and I think everyone could benefit from reading it.
https://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng

He explains what it means to wait upon the Lord.  Waiting upon the Lord means to “stand fast” and “press forward” in faith, “having a perfect brightness of hope.”

It means “relying alone upon the merits of Christ” and “with His grace assisting us, saying: Thy will be done, O Lord, and not ours"  He says, as we wait upon the Lord we are immovable in keeping the commandments, knowing that one day we will rest from our afflictions."  One day I will find rest and eternal joy and it will make all of my trials and afflictions that I face every day worth it.

  He also says," Every one of us is more beloved to the Lord than we can possibly understand or imagine. Let us therefore be kinder to one another and kinder toward ourselves. Let us remember that as we wait upon the Lord, we are becoming “saint[s] through [His] atonement, … submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon [us], even as a child doth submit to his father."  I sure need a lot of help with all of these things, and I am being shaped and refined for a great work.  It definitely tests me and makes me feel like I am going to fall apart on an almost daily basis, but I know that the Lord is aware of me and what our family is going through.  He knows what I can handle.  He sees the whole picture and we can only see this tiny moment, a small moment compared to eternity.  Unfortunately this life is all we know, and it takes a lot of faith to trust Him sometimes and to leave it in his hands, and to say Thy will be done.  But that is what I must do.

Rough Weekend

This weekend has been a difficult one for Kera.  The week started off really well with Kera feeling good, and having the positive results back from the MRI.  She even started going back to school in the afternoon on Wednesday.  She went back to school again on Thursday, and things were going well there.  I talked to her teachers about the boy that was in her class last year that teased her about her cheeks because he said something to her again on Wednesday while they were lining up to go back to class.  Kera's teacher told all of the 3rd grade teachers about this boy and what he was doing, and the boy's teacher, who is currently on maternity leave right now, wrote me an email saying that she was not scheduled to go back for a few weeks, but that she was going to go to school the next day to talk to the boy herself.  She said she would make sure Kera felt safe and that the boy didn't bother her anymore.  I was relieved about that, and hopefully it would help her feel more comfortable going to recess.  

So Wednesday and Thursday were good, then Friday morning Kera woke up feeling very nauseous and had a small headache.  Friday night we had plans to go as a family and have a cookout and wienie roast at the park.  I told Kera to try and rest, so she would feel well enough to go.  I don't think she felt great, but she wanted to go.  We had a good time roasting hot dogs and smores, and letting the kids play at the park, but I could tell she wasn't feeling great.  She has been eating very little lately, and will only eat a few bites of things. We had fun telling ghost stories by the fire, then we packed up for home.  The next morning Kera woke me up to tell me that she felt really awful.  She said when she woke up everything went black and she couldn't see right away.  She said it took her a few seconds to see, and she threw up soon after she got up.  The rest of the day she also struggled with her energy level and couldn't  do much.  I found her a bike at a garage sale even and she didn't come out to look at it until later that evening. As a side note I did find a great deal on a leather couch and chair with ottoman for only $700 that morning.  Gotta take joy in some things right!  ;)  

This morning she woke up again feeling very bad and had the same problem with her eyes.  She said she woke up and couldn't see, so she sat on her bed for a minute, and once her eyes came into focus she ran to the bathroom and threw up.  So these past three mornings have been really bad and I'm wondering what the deal is.  Mostly she has the problem with her eyes in the mornings after she gets up from sleeping, but sometimes her head will hurt and her vision is blurry when she gets up after sitting down.  Before this whole thing happened I had scheduled several doctor appointments for Kera tomorrow, one of them being an opthalmologist, and another one a psychologist, a natural homeopathic dr, and her radiation oncologist.  So it will be a long day, but I'm very glad that we made those appointments now because when I first called them to schedule, the ophthalmologist and the homeopathic dr. didn't have openings until December. Our primary childrens oncologist called them and they were able to get her in to all of these people on Monday.  I'm hoping that we can find out some helpful information tomorrow.  

As I'm typing this Kera is feeling well enough to fight with Michael and make him cry, so I guess I should take pleasure in that?? ;)

MRI results

For those of you who haven't seen my facebook post, we took Kera in for her follow up MRI on Friday.  It has been 4 weeks since completing her radiation treatment, and we found out that the tumor had shrunk down in size by about 30%.  At first I wasn't sure what to hope for because our doc had explained before that the size of the tumor is not always the indicator, it is mostly the symptoms.  Since she hasn't had the dizziness or headaches, and she has had improvement in her right side of her face with the right eye tracking and mouth drooping, I know the symptoms have improved since radiation started, but I didn't know if the shrinkage was good or bad because I thought if it shrank then maybe it was a more aggressive tumor that shrinks but also grows back quickly.  Our dr. assured us that the shrinkage was a very good sign because that means that it was receptive to radiation and  that's what we want.  It makes me wish that we could go in and shrink it more with more radiation, but we have been told that when you reradiate an area that has already been treated, you risk damaging  vital cells or  and possibly it could lead to death.  I want to ask my radiation onc. doctor about it when I go in next week about a lower dose radiation and what the effects are on a child, but of course I don't want to be too extreme in treatment to cause Kera serious damage.  Our doctor said he was very happy when he saw Kera's results, and that his other two dipg patients did not have nearly the amount of shrinkage that Kera had.  I know this is a blessing and a direct result of so many prayers and fasting on Kera's behalf.  I know we have a long way to go, but I will revel in this small victory for now.  :)
One of our biggest concerns for Kera right now is the nausea that she is plagued with daily.  She suffers like a pregnant woman suffers.  She is very sensitive to smells, and certain foods just don't sound good at all.  Not too many things sound good to her, and right now she has a very small appetite.  The doctor thinks this could be also linked to her steroids that she was on for so long, and how voracious her appetite was, and now her body is trying to adjust.  It could also be that the location of the tumor is causing the symptom of nausea.  I have been interested in more homeopathic or natural remedies, and we said we were interested in learning more about those, so he gave us a name of a doctor that he knows that deals with homeopathic treatment and things.  I'm hoping that she may be able to give us tips for getting Kera to not react to smells or foods so strongly.  Another thing that I feel may be helpful because I believe that some of her nausea is psychological. Sometimes being in her room and seeing things that she used in treatment like a blanket or her radiation mask can cause her stomach to be upset and she will throw up.  The other thing we want to look into is going to an eye doctor to help her control her right eye so she won't have blurry vision sometimes or see words jumping around on a page.
We are also thinking that getting her back in school may be good for her.  I think it will be good for her to get out of the house and socialize and learn in an environment that is not at home.  I think it will give her a sense of accomplishment.  It will be scary at first, but I know she enjoys school and wants to be there with her friends learning and enjoying 3rd grade with the rest of her class.  If it doesn't work out, she can always come back home and it will be just fine that way too.  I just want her to try it and not give up because of what other kids might say or what she thinks they may be thinking about her.  She really is starting to look more like herself, and her cheeks have gone down a ton.  Her hair is even starting to grow back from where she lost it during radiation.  So things are looking up, I just want her to feel well and not suffer with the nausea so much, and hopefully these things will help.