I wish I didn't have to say this on my blog, and I wish more that it wasn't happening, but Kera is starting to show symptoms of the tumor again. I have noticed her getting weaker in the past week or so, and granted she has been suffering from a bad cold for the past few weeks. I thought her weakness was due to her cold, but Saturday night she was complaining about her left hand and arm being weak. She got my 5 lb. weights and showed me how she could lift the weight just fine with her right arm, but she could not lift it at all with her right. I have also been noticing her dragging her left foot a bit more when she walks too. This new problem concerned me of course, and Sunday night I messaged our Dr. about it. He called me back Monday morning, and he told me that it sounded like the tumor is progressing and this is the reason for her symptoms. When we went in for her MRI a few weeks ago on the 10th, her tumor had not gotten any bigger, but there was a little spot inside the tumor that lit up on the MRI. I didn't want it to be a big deal, and I was hoping that it wasn't, but now that she is showing symptoms it seems that the spot was active tumor cells. It's amazing to me how quickly things change. I was sincerely hoping that we would be great for another 3 months when we were scheduled for our next MRI and we wouldn't have to visit the doctor or anything until then. Dave's mom, who has been staying here for the past 6 months ever since we got the diagnosis, also left to go back home this morning. We were thinking when we booked her flight that we were good and we wouldn't really need her right now. I hope that is the case and we can get some control of these symptoms. Kera has been a bit worried, especially after I talked to the doctor and she knew we would have to go and be seen. She also started feeling dizzy just after she got into bed, and she came upstairs to tell me that she got dizzy and then she went to the bathroom to throw up.
I am so devastated by this new development. I feel so grateful that she has been feeling so well these past few months. I just wanted the good times to continue for longer. I am not ready for this again. I know that Kera isn't either. She told me yesterday that she will not go back on the steroids again. I don't want her to either, but symptoms of the tumor are scary, and we may end up not having a choice.
Please pray extra hard for our little Kera. I hope to find out some answers tomorrow morning when we go into the doctor. They will present us with different options. Some of them will be different forms of chemo, some will be open clinical trials that she qualifies for now that she is having tumor progression. I want to do the very best thing for Kera, and I pray that the Lord will help me and our family to know what that will be.
Tuesday, January 28, 2014
Sunday, January 12, 2014
I am grateful
I have been through a roller coaster of emotions this weekend. I started the day on Friday with Kera's MRI. I wasn't especially worried about it before hand since I have seen how she's been doing and how well she's been feeling. After the MRI we went to clinic to talk with the doctors about the results. They discussed the results and showed us a picture of the tumor and luckily the size of the tumor has not gotten any bigger. The fact that the tumor itself has not grown was good news. Even better, she is symptom free and doing well physically, and that is the most important thing.
But just being in clinic and looking at pictures of the tumor and being at primary children's again makes the whole process "real" again. It's easy to go about life and enjoy seeing her able to do all of the things she used to do, but this visit snapped me back to reality and it hurt! I know that she has this DIPG tumor, but it's been nice not being around doctors and surrounded by all the sadness. Does that make sense? So I've been feeling kind of depressed and emotional all weekend since the appointment.
I have been fortunate to have people around me who have been willing to listen to me and who have allowed me to cry and talk it out. I have come to the conclusion that it's good to get the emotions out, but I also need to be more grateful. I am so grateful that she is doing well and feeling great! After Kera was diagnosed I didn't know if she would ever be able to do so many things again. And for the most part, she is doing them! That is a miracle and an answer to many prayers. People have been telling me how happy they are about the results, and I was thinking in the back of my mind, but she still has the tumor, and it isn't going away. Although that may be true, I need to celebrate the victories that we have been given, and just enjoy today.
Disney world was amazing by the way. The volunteers at Give Kids The World were great. The GKTW program is amazing! It is a non profit organization that allows sick kids to come and stay at their resort. Make a wish provided our travel to Floriday, but they are the ones who issue the passes to disney world, hollywood studios, and sea world. They also have daily activities for the kids like trick or treating on tuesday, a birthday celebration activity, Christmas on Thursday, and wonderful events each day. The resort offers all the kids free food and lodging (we didn't stay here because they were booked and they set us up at a Disney resort which was also amazing). They also had a pool, a mini golf place, a movie theatre, playground, a free arcade, carousel, and a kids day spa. They also work together with the make a wish program to provide kids with their wish of a Disney world vacation. We made so many wonderful memories!! Disney also gives each family a free photo pass where we can have all the park photographers take our pictures at the disney parks and they put them all together on a cd. I'm in the process of editing all the pictures and soon I will post them on here. I'm so thankful to programs like make a wish and GKTW who can help families with very sick children to make priceless memories and offer these families a bit of hope and magic while the child is battling a life threatening illness. Thank you to my wish granters, make a wish, GKTW, family and friends who came to Kera's star raising party and for those who have sent cards, gifts, and well wishes to Kera. You all mean so much to us!
But just being in clinic and looking at pictures of the tumor and being at primary children's again makes the whole process "real" again. It's easy to go about life and enjoy seeing her able to do all of the things she used to do, but this visit snapped me back to reality and it hurt! I know that she has this DIPG tumor, but it's been nice not being around doctors and surrounded by all the sadness. Does that make sense? So I've been feeling kind of depressed and emotional all weekend since the appointment.
I have been fortunate to have people around me who have been willing to listen to me and who have allowed me to cry and talk it out. I have come to the conclusion that it's good to get the emotions out, but I also need to be more grateful. I am so grateful that she is doing well and feeling great! After Kera was diagnosed I didn't know if she would ever be able to do so many things again. And for the most part, she is doing them! That is a miracle and an answer to many prayers. People have been telling me how happy they are about the results, and I was thinking in the back of my mind, but she still has the tumor, and it isn't going away. Although that may be true, I need to celebrate the victories that we have been given, and just enjoy today.
Disney world was amazing by the way. The volunteers at Give Kids The World were great. The GKTW program is amazing! It is a non profit organization that allows sick kids to come and stay at their resort. Make a wish provided our travel to Floriday, but they are the ones who issue the passes to disney world, hollywood studios, and sea world. They also have daily activities for the kids like trick or treating on tuesday, a birthday celebration activity, Christmas on Thursday, and wonderful events each day. The resort offers all the kids free food and lodging (we didn't stay here because they were booked and they set us up at a Disney resort which was also amazing). They also had a pool, a mini golf place, a movie theatre, playground, a free arcade, carousel, and a kids day spa. They also work together with the make a wish program to provide kids with their wish of a Disney world vacation. We made so many wonderful memories!! Disney also gives each family a free photo pass where we can have all the park photographers take our pictures at the disney parks and they put them all together on a cd. I'm in the process of editing all the pictures and soon I will post them on here. I'm so thankful to programs like make a wish and GKTW who can help families with very sick children to make priceless memories and offer these families a bit of hope and magic while the child is battling a life threatening illness. Thank you to my wish granters, make a wish, GKTW, family and friends who came to Kera's star raising party and for those who have sent cards, gifts, and well wishes to Kera. You all mean so much to us!
its my birthday!
This is kera typing. 4 days ago it was my birthday and yesterday I went ice skating with two of my friends and my mom. After ice skating we went for ice cream and opened their presents they got me. The day before the ice skating party I slept over with them. On my actual birthday which was weds the eighth, we had a family party with just my family and my grandma. We had cake and ice cream. It was a lot of stuff since I had Christmas, then Disneyworld, and then my birthday. And my dad's birthday was the day before mine! It has been pretty busy week.
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