I am not good with words. I never have been. I am not good at saying just what someone needs to hear. This makes it hard for me to meet or chat with new parents who have recently had a child diagnosed with cancer. But last week when Malina was inpatient I had a nagging feeling that I needed to introduce myself to a new family. I kept putting it off because of fear of not saying the right thing.
Finally on Saturday, Malina's last day in, I said a prayer, grabbed few gold ribbons and a ladybug nightlight and made my way to their room. It was just the dad and son in the room at the time. My heart broke. I gave him the ladybug and introduced myself. I let him know that my daughter was being treated there at Children's Mercy as well. The dad wrote down my name and Malina's. I let him know if there was anything I or any of the many foundations and organizations could do to help to let me know.
I didn't feel like I was done but I didn't know what else to say. He started talking about his faith. He commented how we are always taught and sometimes that we teach about these situations and how important it is to keep our faith at these times. And then he told me it is hard. Yes is can be hard. I was able to tell him how much Heavenly Father and Jesus Christ love his son. I told him that I know that Jesus Christ knows how his son feels and how him and his wife feel as parents. I know that this dad knows these things but it can be so hard when you are now the one thrown into and must live it.
I am thankful that I have not lost my faith during this time. I remember feeling helpless and frustrating and praying so hard for answers at the beginning. I also remember the perfect peaceful feeling I had when my husband called me and told me that we had answer from her MRI. I have held onto that feeling this whole time. I also know that Christ has felt all my heart ache and stress once before. He also knows how my sweet 2 year old feels.
My heart breaks for all the families who are a part of this community. It is hard. I am glad to know that there is some one who knows how I feel and can hold my hand when needed.
Wednesday, November 19, 2014
Friday, November 14, 2014
This world is hard
Today is day 5 of Malina's 6 day stay. She has been doing great and handling her chemo well. She did get a little sick Wednesday and again today. It is hard to watch her not feel well but it necer lasts long. Malina is now out playing with her nurse and care assistant. She just goes from person to person until they all get busy and send her back. Everyone loves her here and are so good to her.
When we first came in on Monday there were not very many people on this floor. Today, it seems like almost all the rooms are filled. My heart breaks as I see, what I assume, are new families coming in. I know not every person who comes here is new to this world but many are. Childhood cancer is not as rare as some think it is.
Yesterday I saw a grandpa in the hallway talking on the phone and he lost it. I could hear his sobs and my heart broke. Just down the hall there was a room filled with family and a little boy laying in the hospital bed. Everyone was sad and hugging each other, many of them had tears. I saw a mother watch her little boy play in the play room. Her face was filled with love and concern. She looked scared. A dad was trying to be strong but you could see the fear in his eyes as his world just changed forever. As parents we can't fix this with a kiss but we can comfort and be strong for our babies.
This world sucks. The cancer world is hard. There is so much negativity and sadness in this world. However, there is so much good and love that is also in the world of cancer. A friend of mine was in for her cancer check up this week and saw this saying on the wall:
What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendships.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the Spirit.
I really like this. Cancer will only do what we allow it to do. This has not been an easy road for our family but I do know that we could not do this without each other and without our faith.
When we first came in on Monday there were not very many people on this floor. Today, it seems like almost all the rooms are filled. My heart breaks as I see, what I assume, are new families coming in. I know not every person who comes here is new to this world but many are. Childhood cancer is not as rare as some think it is.
Yesterday I saw a grandpa in the hallway talking on the phone and he lost it. I could hear his sobs and my heart broke. Just down the hall there was a room filled with family and a little boy laying in the hospital bed. Everyone was sad and hugging each other, many of them had tears. I saw a mother watch her little boy play in the play room. Her face was filled with love and concern. She looked scared. A dad was trying to be strong but you could see the fear in his eyes as his world just changed forever. As parents we can't fix this with a kiss but we can comfort and be strong for our babies.
This world sucks. The cancer world is hard. There is so much negativity and sadness in this world. However, there is so much good and love that is also in the world of cancer. A friend of mine was in for her cancer check up this week and saw this saying on the wall:
What Cancer Cannot Do
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendships.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the Spirit.
I really like this. Cancer will only do what we allow it to do. This has not been an easy road for our family but I do know that we could not do this without each other and without our faith.
Saturday, November 8, 2014
This Moment
I have a need to write something at this very moment......but I don't know exactly what. I don't have anything specific on my mind; well I actually have a million things going through my mind at once and I don't ever seem to know what to do with any of it. Most of the time I feel like my mind is a tangled web of thoughts from every aspect of my life.
At this moment I am watching my sweet girls play with play-doh and I am amazed that Malina is tolerating it!! She is usually particular about different textures and things on her hands. Jenna is making me pancakes and so Malina is following her example.
I guess I am thankful for this simple moment that my girls have to be together. I am thankful to have my children here with me. Yes Malina has cancer however, this moment is good. This moment is perfect for me.
At this moment I am watching my sweet girls play with play-doh and I am amazed that Malina is tolerating it!! She is usually particular about different textures and things on her hands. Jenna is making me pancakes and so Malina is following her example.
I guess I am thankful for this simple moment that my girls have to be together. I am thankful to have my children here with me. Yes Malina has cancer however, this moment is good. This moment is perfect for me.
Friday, November 7, 2014
That Was Hard
I should start by saying how blessed my husband and I feel that Malina has done so well through her treatments. She often has a smile on her face and she does so much better at warming up to people around her. Our Malina lights up a room and lets us know that everything will be ok.
A couple of Saturdays ago Malina was very constipated. She is on several different laxatives plus a home remedy. Daddy gave her the medications Saturday night and I gave them to her Sunday morning. About mid morning she finally started pooping. She didn't stop though. She was on thee toilet every 5 minutes going. Malina would scream that her bottom hurt and ask to go to the toilet. While on the toilet she would still cry about it. On Monday morning she had an appointment to check her counts and we chatted with the nurse and doctor about the weekend. We all figured that her body was still clearing out the laxatives and that she would be fine. Monday night was worse! Tuesday morning Malina was having scans done. She was scheduled for a CT and MRI but her doctors added an x-ray since she was having such a hard time. While we waited for her to get out of her scans we ran into her doctor and told her that we were really concerned. We knew something wasn't right but didn't know what was going on. Tuesday was hard again. I really wanted to call in but my husband encouraged me to wait so that the right people could look at all her scans before they talked to us.
We got a call mid morning on Wednesday and were told that Malina's scans were clean!!! They could not see anything were the tumor had been and no new tumors. Such great news!! However, we were then told that Malina had a "healing fracture" in her sacral ala (part of her sacrum bone). So that is probably where all of her pain was coming from. We were told her give her pain medicine and wait it out. Her oncology team was contacting her orthopedic surgeon for his input too. By Wednesday night her pain medicine wasn't working anymore. It maybe lasted an hour. Again, another bad night.
Thursday morning Malina had an appointment in clinic to check her blood counts. As soon as we walked in everyone could tell that she wasn't doing well. She wasn't herself at all. I myself was emotional by this point. I didn't know what was going on with my daughter but I knew something was wrong and I couldn't fix it. Worst feeling ever! Once we got to our room I was able to chat with her nurse for a minute and tell her how the week had gone. She left to get a hold of our team and gather supplies. When she came back she told me that there was a good chance Malina would be admitted. For a second I was scared because I didn't know why, but then my very next thought was that Malina needed the help of these nurses and doctors and she was in the right place. Malina needed to be in the hospital.
I had both girls with me that day at the hospital and thankfully Jenna is so well loved and social that she was happy hanging out with Miss Elizabeth (child life) or any of the nurses. Once our doctors came in to see Malina they immediately noticed that she was drooling. We had noticed it earlier in the week but didn't think too much of it. Her doctors told us that it is a sign of mucositis. They asked me how I felt about having her admitted. I let them know that I was ok with it, that she needed to be here. From that point everything happened fast. They were able to get us up to a room and settled and get her started on pain meds.
That was the worst I have ever seen Malina. I hated not being able to make it all go away. As mom I hate not being able to fix it. But as mom I can hold my baby and comfort her. I can love her and let her know that she will be ok.
Malina finally started perking up Friday afternoon and was released the next Tuesday. She is doing much better and goes in Monday to be admitted for six days of chemo.
A couple of Saturdays ago Malina was very constipated. She is on several different laxatives plus a home remedy. Daddy gave her the medications Saturday night and I gave them to her Sunday morning. About mid morning she finally started pooping. She didn't stop though. She was on thee toilet every 5 minutes going. Malina would scream that her bottom hurt and ask to go to the toilet. While on the toilet she would still cry about it. On Monday morning she had an appointment to check her counts and we chatted with the nurse and doctor about the weekend. We all figured that her body was still clearing out the laxatives and that she would be fine. Monday night was worse! Tuesday morning Malina was having scans done. She was scheduled for a CT and MRI but her doctors added an x-ray since she was having such a hard time. While we waited for her to get out of her scans we ran into her doctor and told her that we were really concerned. We knew something wasn't right but didn't know what was going on. Tuesday was hard again. I really wanted to call in but my husband encouraged me to wait so that the right people could look at all her scans before they talked to us.
We got a call mid morning on Wednesday and were told that Malina's scans were clean!!! They could not see anything were the tumor had been and no new tumors. Such great news!! However, we were then told that Malina had a "healing fracture" in her sacral ala (part of her sacrum bone). So that is probably where all of her pain was coming from. We were told her give her pain medicine and wait it out. Her oncology team was contacting her orthopedic surgeon for his input too. By Wednesday night her pain medicine wasn't working anymore. It maybe lasted an hour. Again, another bad night.
Thursday morning Malina had an appointment in clinic to check her blood counts. As soon as we walked in everyone could tell that she wasn't doing well. She wasn't herself at all. I myself was emotional by this point. I didn't know what was going on with my daughter but I knew something was wrong and I couldn't fix it. Worst feeling ever! Once we got to our room I was able to chat with her nurse for a minute and tell her how the week had gone. She left to get a hold of our team and gather supplies. When she came back she told me that there was a good chance Malina would be admitted. For a second I was scared because I didn't know why, but then my very next thought was that Malina needed the help of these nurses and doctors and she was in the right place. Malina needed to be in the hospital.
I had both girls with me that day at the hospital and thankfully Jenna is so well loved and social that she was happy hanging out with Miss Elizabeth (child life) or any of the nurses. Once our doctors came in to see Malina they immediately noticed that she was drooling. We had noticed it earlier in the week but didn't think too much of it. Her doctors told us that it is a sign of mucositis. They asked me how I felt about having her admitted. I let them know that I was ok with it, that she needed to be here. From that point everything happened fast. They were able to get us up to a room and settled and get her started on pain meds.
That was the worst I have ever seen Malina. I hated not being able to make it all go away. As mom I hate not being able to fix it. But as mom I can hold my baby and comfort her. I can love her and let her know that she will be ok.
Malina finally started perking up Friday afternoon and was released the next Tuesday. She is doing much better and goes in Monday to be admitted for six days of chemo.
Friday, October 17, 2014
New Normal
We were told at the beginning of this journey that we would find a new normal. In a way I feel like we have. It seems like the only normal thing is constant change and uncertainty.
We were also told that Malina's treatment plan would be 9 months but to expect a year due to set backs along the way. Now that we are 6 months into chemo and still have 3.5 months to go, I am understanding why they told us this. It has taken Malina 13 weeks to go 8 weeks in her treatment plan. Her numbers (ANC, platelets, hemoglobin) have not been good enough to get chemo several times lately which pushes treatment out by a week or two each time. It can be frustrating but it is also ok.
Her body is having a hard time recovering from each chemo treatment. Her body is struggling. Her doctors reassure us all the time that this is normal to see at this point in her treatment plan. It doesn't make this any easier to see your 2 year old struggle with the bad effects chemo has on the body. I worry every day about the long term effects these medicines will have on my baby. I know she will be ok and I know that she is being watched over by a Heavenly Father who loves who more than I can imagine, but it is still hard as a parent.
I will say that despite all the bad effects chemo can have on the body Malina has truly thrived these last few weeks. I can't remember the last time we had her walker out. She is walking more and more on her own; with her braces. She wants to be down and all over the place. Also, when all this started back in March Malina was not talking very much at all. She now has a lot to say and is learning her shapes and colors. Malina is proving to us everyday that she is a strong girl and such a fighter.
We were also told that Malina's treatment plan would be 9 months but to expect a year due to set backs along the way. Now that we are 6 months into chemo and still have 3.5 months to go, I am understanding why they told us this. It has taken Malina 13 weeks to go 8 weeks in her treatment plan. Her numbers (ANC, platelets, hemoglobin) have not been good enough to get chemo several times lately which pushes treatment out by a week or two each time. It can be frustrating but it is also ok.
Her body is having a hard time recovering from each chemo treatment. Her body is struggling. Her doctors reassure us all the time that this is normal to see at this point in her treatment plan. It doesn't make this any easier to see your 2 year old struggle with the bad effects chemo has on the body. I worry every day about the long term effects these medicines will have on my baby. I know she will be ok and I know that she is being watched over by a Heavenly Father who loves who more than I can imagine, but it is still hard as a parent.
I will say that despite all the bad effects chemo can have on the body Malina has truly thrived these last few weeks. I can't remember the last time we had her walker out. She is walking more and more on her own; with her braces. She wants to be down and all over the place. Also, when all this started back in March Malina was not talking very much at all. She now has a lot to say and is learning her shapes and colors. Malina is proving to us everyday that she is a strong girl and such a fighter.
Easier said than done
It is pretty evident that I am not good at keeping a blog anymore. I used to be really good at it and a lot of other things. I really wanted to keep this going and be diligent in keeping this blog up to date for Malina. It would give her something to look back on one day and be able to know what all has happened during this time in her life. I just haven't been good at it. It isn't my thing.
I have turned to facebook to keep updates going on Malina https://www.facebook.com/teammalina It just seemed like the easiest way for me to keep everyone informed. However, I do miss writing things down just for Malina. I need to be better at this and a lot of other things. I know I have had a lot going on but it doesn't mean I can't try.
Now I am not saying that I will be prefect at this but here's to trying harder to be better. All I can do is try to be better than I was yesterday.
I have turned to facebook to keep updates going on Malina https://www.facebook.com/teammalina It just seemed like the easiest way for me to keep everyone informed. However, I do miss writing things down just for Malina. I need to be better at this and a lot of other things. I know I have had a lot going on but it doesn't mean I can't try.
Now I am not saying that I will be prefect at this but here's to trying harder to be better. All I can do is try to be better than I was yesterday.
Friday, June 27, 2014
Week Long clinic chemo
I don't even know where to begin tonight. I have so much on my mind right now that I feel like my head is spinning. I have been wanting to sit down and type for awhile now but every time I have a free moment to do so I am too tired, in fact I am barely with it now.
After Malina missed counts a few weeks ago we went back in on a Monday to try again, and she made it! It actually worked out well because my mom and sister were in town and could help with getting Jenna to and from school that week. I am always amazed at the blessings that show up in our lives everyday. It was really frustrating that Malina didn't make counts but it turned out to be a good thing. I originally thought that her and I would be in the clinic from 8 a.m. until 5 p.m. or later everyday for 5 days. That did not sound enjoyable to me in anyway. Well when we went in Monday we were told that she was getting way too much fluid for the chemo she was getting so what I thought was going to be 9+ hour days turned into 4-5 hour days! It was truly amazing!
Malina really did well all week. We even got out and walked around the clinic for a little bit. She loved going for walks. Her counts were low Thursday (June 12) and had to get some blood to help boost her. My mom and sister had left earlier that day so I had to make other arrangements for Jenna to be picked up from school since I would be longer than planned.
On Friday when we got to clinic Malina seemed to be having an off day. Of course it didn't help that we had already been there all week and we both were done. Well then her port wasn't wanting to work and that was just frustrating. She only had one side accessed and the nurse couldn't get a draw back on it. Not good! I was told that they would probably have to access the other side and work on the side that wasn't drawing. Dang! Malina HATES when her port is messed with. It really is an issue for her, I can't blame her! The nurse (Mary) decided that she was going to wiggle the needle around a bit in the port to try and get it to work. After a couple of tries and many tears by mom and Malina, it worked! So they didn't have to access the other side!! But it was still very traumatic for Malina and I hate seeing her sad. I wasn't very nice that day to some of the staff; I felt bad but dang it I am allowed grumpy, unsociable days when we are in clinic!
I am thankful for good nurses and good doctors. We really haven't had problems with any of ours. Now there was one that week who made me feel like crap. One of the NP's filling in for ours told me that they would not schedule Malina's scans around our favorite sedation nurses schedules. However, the head of our team Dr Neville was pretty mad when I told her that. Of course they were able to make things work for us, I would be understanding if they couldn't but it wasn't that NP's place to tell me no way and look at me like I was stupid. Some people!
After Malina missed counts a few weeks ago we went back in on a Monday to try again, and she made it! It actually worked out well because my mom and sister were in town and could help with getting Jenna to and from school that week. I am always amazed at the blessings that show up in our lives everyday. It was really frustrating that Malina didn't make counts but it turned out to be a good thing. I originally thought that her and I would be in the clinic from 8 a.m. until 5 p.m. or later everyday for 5 days. That did not sound enjoyable to me in anyway. Well when we went in Monday we were told that she was getting way too much fluid for the chemo she was getting so what I thought was going to be 9+ hour days turned into 4-5 hour days! It was truly amazing!
Malina really did well all week. We even got out and walked around the clinic for a little bit. She loved going for walks. Her counts were low Thursday (June 12) and had to get some blood to help boost her. My mom and sister had left earlier that day so I had to make other arrangements for Jenna to be picked up from school since I would be longer than planned.
On Friday when we got to clinic Malina seemed to be having an off day. Of course it didn't help that we had already been there all week and we both were done. Well then her port wasn't wanting to work and that was just frustrating. She only had one side accessed and the nurse couldn't get a draw back on it. Not good! I was told that they would probably have to access the other side and work on the side that wasn't drawing. Dang! Malina HATES when her port is messed with. It really is an issue for her, I can't blame her! The nurse (Mary) decided that she was going to wiggle the needle around a bit in the port to try and get it to work. After a couple of tries and many tears by mom and Malina, it worked! So they didn't have to access the other side!! But it was still very traumatic for Malina and I hate seeing her sad. I wasn't very nice that day to some of the staff; I felt bad but dang it I am allowed grumpy, unsociable days when we are in clinic!
I am thankful for good nurses and good doctors. We really haven't had problems with any of ours. Now there was one that week who made me feel like crap. One of the NP's filling in for ours told me that they would not schedule Malina's scans around our favorite sedation nurses schedules. However, the head of our team Dr Neville was pretty mad when I told her that. Of course they were able to make things work for us, I would be understanding if they couldn't but it wasn't that NP's place to tell me no way and look at me like I was stupid. Some people!
Friday, June 6, 2014
Research Studies
Have you ever heard of Alex's Lemonade Stand? You should check it out! I have always heard of it and thought how great that it was to have something to simple giving to the research of childhood cancer. I never thought that it could directly impact my little world.
One of the research studies that Malina is involved with just received a large grant from Alex's Lemonade Stand to further the research!!!! The study is specific to Ewing's Sarcoma. They are trying to find if the tumors have markers in the blood. If so, are they shrinking with the tumor or growing. This will make it possible to have to do less scans on child and to know early on if the treatments are working effectively or not.
The doctor who is head of the study told me that there are approximately 200 new cases of Ewing's Sarcoma a year in the United States and 900 in Europe. There is a lot more research going on in Europe for this kind of cancer than here. He said that there are maybe a handful of studies specific to Ewing's Sarcoma in the United States. I am happy that Malina can be apart of this and hopefully, down the road, this will help other children.
The local Fox 4 news channel interviewed us and another family yesterday about the study. Here is a link to it.
http://fox4kc.com/2014/06/05/alexs-lemonade-stand-supports-kc-childhood-cancer-research/
One of the research studies that Malina is involved with just received a large grant from Alex's Lemonade Stand to further the research!!!! The study is specific to Ewing's Sarcoma. They are trying to find if the tumors have markers in the blood. If so, are they shrinking with the tumor or growing. This will make it possible to have to do less scans on child and to know early on if the treatments are working effectively or not.
The doctor who is head of the study told me that there are approximately 200 new cases of Ewing's Sarcoma a year in the United States and 900 in Europe. There is a lot more research going on in Europe for this kind of cancer than here. He said that there are maybe a handful of studies specific to Ewing's Sarcoma in the United States. I am happy that Malina can be apart of this and hopefully, down the road, this will help other children.
The local Fox 4 news channel interviewed us and another family yesterday about the study. Here is a link to it.
http://fox4kc.com/2014/06/05/alexs-lemonade-stand-supports-kc-childhood-cancer-research/
One Step Back
Malina was supposed to start 5 long days of out patient chemo yesterday, but that didn't happen. Her starting yesterday was all dependent on her blood counts. This is the first time that she has not made counts. Her platelets were just a little lower than they need to be. The doctors decided to let us have the weekend and come back in Monday to try again. If she makes her counts on Monday then she will start chemo and finish it on Friday. It will still be out patient but they will be long days.
It is a little frustrating to not make counts because then her whole schedule s thrown off. She has 3 more small chemo treatments before she starts getting her scans again and they all had to be moved a week. I know there is a reason for the change and that is ok. It is just hard when we have everything else set to her schedule and when it changes, it changes everything else.
One nice thing about her not making counts is that we will all get to be home this weekend together!
It is a little frustrating to not make counts because then her whole schedule s thrown off. She has 3 more small chemo treatments before she starts getting her scans again and they all had to be moved a week. I know there is a reason for the change and that is ok. It is just hard when we have everything else set to her schedule and when it changes, it changes everything else.
One nice thing about her not making counts is that we will all get to be home this weekend together!
They say it will get easier
I keep getting told that parts of this will get easier. I'm not so sure that will happen.
I hate that every time we get to the clinic Malina starts to have anxiety over being there. She gets fussy and crabby and clingy and shy. I hate having to be the bad guy and take her all the time. I'm supposed to be mom and protect her from all the scary and hurtful things in the world. I know I could not have prevented her cancer, but she is terrified of going in all the time. She is terrified of stickers, always has been and she gets a huge sticker put on every time we go in. That is about the worst thing for her. Malina SCREAMS every time the nurses are accessing her port and de-accessing her. When I say SCREAM I mean it. She is loud, red, sweaty and just hysterical. I HATE IT! It absolutely breaks my heart every time we have to do this. And I know it is mostly because she just doesn't like to have people in her space and touching her.
As sad and as hard as this is, I know that Malina is getting the help and treatment that she is in need of. She has had amazing doctors and nurses through out this process so far. Our whole family has been treated wonderfully by all those involved in her care. I know that she will be ok and I know that she is getting the care that she needs. In a way I am glad that she is so young so hopefully she won't remember all of these traumatic experiences.
I also know that this experience will make our family stronger. I know that I have a strong girl who never ceases to amaze me!
I hate that every time we get to the clinic Malina starts to have anxiety over being there. She gets fussy and crabby and clingy and shy. I hate having to be the bad guy and take her all the time. I'm supposed to be mom and protect her from all the scary and hurtful things in the world. I know I could not have prevented her cancer, but she is terrified of going in all the time. She is terrified of stickers, always has been and she gets a huge sticker put on every time we go in. That is about the worst thing for her. Malina SCREAMS every time the nurses are accessing her port and de-accessing her. When I say SCREAM I mean it. She is loud, red, sweaty and just hysterical. I HATE IT! It absolutely breaks my heart every time we have to do this. And I know it is mostly because she just doesn't like to have people in her space and touching her.
As sad and as hard as this is, I know that Malina is getting the help and treatment that she is in need of. She has had amazing doctors and nurses through out this process so far. Our whole family has been treated wonderfully by all those involved in her care. I know that she will be ok and I know that she is getting the care that she needs. In a way I am glad that she is so young so hopefully she won't remember all of these traumatic experiences.
I also know that this experience will make our family stronger. I know that I have a strong girl who never ceases to amaze me!
Saturday, May 24, 2014
This Girl!
I tell you what, this girl of ours amazes me everyday!
Malina has been doing wonderful with her physical therapy this month. She is trying to stand more on her own and has even tried to take a few steps!
She did awesome a few weeks ago trying to walk with her walker. Because she is not strong enough to support herself, we do have to help her by supporting her as she stands or tries to take steps. We did have Malina fitted for leg/ankle braces last week and we should get those the middle of June.
We have been working with a therapist from CMH who comes to our home once a week, Kelli, she is great and Malina is starting to finally like her. However, we just found out that Malina will qualify for a program called First Steps through the school district. We have a meeting with them next week and then they will have someone come in our home once a week to work with Malina. She also receives therapy when she is in the hospital for chemo. Everyone has been very impressed with how well Malina has been able to regain her different functions since her tumor was removed. We know it will still take more time, but are confident that she will regain all ability.
Malina has been doing wonderful with her physical therapy this month. She is trying to stand more on her own and has even tried to take a few steps!
We have been working with a therapist from CMH who comes to our home once a week, Kelli, she is great and Malina is starting to finally like her. However, we just found out that Malina will qualify for a program called First Steps through the school district. We have a meeting with them next week and then they will have someone come in our home once a week to work with Malina. She also receives therapy when she is in the hospital for chemo. Everyone has been very impressed with how well Malina has been able to regain her different functions since her tumor was removed. We know it will still take more time, but are confident that she will regain all ability.
Sunday, May 4, 2014
Reality Check
I have had so much on my mind this week. A few different times this week I have had moments that remind me of the reality of our new normal.
Monday I took Malina in to have her neulasta shot and lab work done. As I was sitting in the waiting room enjoying the early morning snuggles of my sweet girl, she threw up all over her and I. I couldn't even think, "how gross". My first thought was "my poor baby girl". It always sucks to see your kids sick, even worse when they can't tell you. Once we got her back to her room I was able to get her out of her yucky clothes and I wrapped her in a blanket and just snuggled her some more as we watched morning cartoons. The nurses and doctors were in and out doing their thing, which she is never happy about, but in between all that, I just got to hold my baby. It's no fun that the chemo drugs make her sick to her stomach. They help one thing but then make you feel yucky. She is on medications to help her stomach but that morning she was feeling extra bad.
Her lab work was looking kind of low so Nancy (Malina's Nurse Practitioner) told me to take her back on Thursday to have her labs ran again and possibly have a blood transfusion. I was pretty emotional the whole time we were at the clinic. It just really sucks to not be able to make her all better. I hate that as mom, I can't be sick for her. I really hold onto the snuggle moments a lot tighter now.
After we got home Malina saw Jenna eating so I quickly made her something to eat too. Since she is so pick now about food she gets just about anything she wants, when she wants it. She ate about a quarter of her quesadilla and threw it all up. She thought it was super gross this time! We quickly cleaned her up and she started asking for more, so she ate more! I was glad to see that is didn't bother her much.
Late Monday night (like 9pm, after he had gotten home and had a long busy day) Pablo (Fellow) called to check on Malina and myself since I was having a hard time in the clinic that morning. He was so nice and encouraging. He reassured me that everything she was feeling is normal and that the way I was feeling was normal and ok. It is so encouraging and nice to know that Malina is getting care from a team of doctors that are not just concerned with her but our family as well.
Also this week Malina has been losing her hair. It really started bad while we were in the hospital the week before but got worse after being home. Her hair is really thick so it didn't come out all at once. It was however coming out by the handfuls! It was definitely sad but also got to the point that is was annoying to have her hair everywhere! On Wednesday I came home from picking Jenna up from school and I could tell that Malina's hair seemed a lot thinner than from when I left. Billy had given her something to eat and her hair kept getting in her mouth so he decided to brush her hair and run his fingers through it. Most of it came out. I couldn't handle it. I broke down in tears. It was another reality shock for me. A friend of mine came over and trimmed up what was left, it was looking much better after that! Her hair has continued to fall out this week so tonight (Sunday) Billy shaved the rest off. It wasn't as hard like it was earlier in the week but it is still sad. I know her hair will grow back and it might even be different. Of course she is still beautiful and I can't get over her cheesy smile!
Wednesday, April 23, 2014
I Feel My Savior's Love
Yesterday was a bit of hard day for Malina. She is not wanting to eat much while on this new chemo drug which isn't helping helping her tummy. She threw up twice yesterday once in the middle of her chemo and then right after her chemo. The second time she had just finished half a small bag of cheetos and threw it up all over her and I! It was really gross. I felt so bad for her that I didn't even care that I had barfed cheetos all down my legs. She just wanted to snuggle after we got her all cleaned up. NO more throwing up the rest of the day but she didn't eat much either. The morning she ate a good breakfast but that was about it. I could tell throughout the day that her tummy wasn't feeling well but no throwing up. She is getting two medications to help with the nausea and there is a third we can give her if it gets really bad.
Even though she hasn't been feeling amazing, she is still acting pretty happy. In fact she didn't take a nap until 4:20 today!! And she would only nap if I was holding her, which I was totally ok with. I love getting all the snuggles in I can with her.
I keep waiting for the day that she will wake up and all her hair will be gone. It will be a really hard day for me. Yes, I know it will grow back and yes, I know she will be just as cute but seeing the physical affects chemo is going to have on her from feeling yucky to loosing her hair will be extra hard. My girls have pretty amazing hair. They have always had hair since the day they were born. Their hair is kind of a big deal to me. I mention the hair thing because hers has been shedding a lot today. It makes me sad and want to keep her close.
You know how as parents we want to protect our children from all the bad and yuck in the world and maybe if we hold them extra tight nothing bad will happen? Well I keep hoping that the more I snuggle her, the more I keep her close and tight, that I will be able to take all the hurt away. I'm so sad for her. I am so sad for our family. In these moments I am thankful for my Savior. I am thankful that He knows my heart. As I hug her tight I feel His arms around us, protecting us.
I have so many favorite primary songs but this is definitely near the top of that list.
I Feel My Savior's Love
1. I feel my Savior's love
In all the world around me.
His Spirit warms my soul
Through ev'rything I see.
2. I feel my Savior's love;
Its gentleness enfolds me,
And when I kneel to pray,
My heart is filled with peace.
3. I feel my Savior's love
And know that he will bless me.
I offer him my heart;
My shepherd he will be.
4. I'll share my Savior's love
By serving others freely.
In serving I am blessed.
In giving I receive.
Chorus: He knows I will follow him,
Give all my life to him.
I feel my Savior's love,
The love he freely gives me.
Tuesday, April 22, 2014
My Baby has Cancer
My Malina amazes me everyday with her strength and smiles. I am so happy with all the progress she has made since her surgery. Everyone has said that it is amazing how resilient children are and that is so true! She has gained so much mobility back already but still has a long way to go. She has been able to crawl and move her legs and has some sensation back. It will take time to get her up and walking again and that is ok. She will get there! She is a rock star!
Malina is in her third week of chemo right now. She is getting a new set of drugs this week so we will see how she handles these. So far everything has looked great, in fact when we checked into the clinic yesterday morning they told us she had gained 2 pounds!!! Poor girl wasn't excited to be back here but has quickly gotten the hang of what is going on this time. O but she hasn't given into the hospital food yet. She's not a fan of it, so all of her weight gain has been from home.
As much as it sucks to be going through this trial, I do have to say that it is ok. We will get through this. Our sweet Malina will be ok. I am thankful for so many things during this hard time. We have been so blessed between people cleaning our house to bringing us food to playing with Jenna. I KNOW without a doubt that the Savior and our Heavenly Father loves our family and is so very mindful of us and Malina during this time. There is no way that He is going to leave us on our own. I can't tell you how many times I have felt His love in the past month.
We are so thankful for all the many prayers and kind thoughts that have been for Malina and our family. We know that is what is keeping her and us strong during this time. We couldn't do this without all of our wonderful friends and family.
Friday, April 18, 2014
The Next Week
When Dr Anderson finished her surgery he came to talk with Billy and I. He let us know that he did not know what it was that he took out of her back. It wasn't pussy and it wasn't hard. He had never seen it before. Samples of it had been sent out to different pathology labs and also over to Truman Medical which is across the street from Children's Mercy. They had lots of different people working on her case to figure this out.
Malina did great during her surgery and right after. In fact, she did great all during her recovery. It was so sad to see her not being able to move and get around. But we knew that she just needed to get better.
She started her recovery in the PICU, then we were moved up to 6 Hall Tuesday night. On Thursday afternoon Dr Anderson came in to see us. Billy had gone to eat lunch with the guys from work and Jenna was playing with friends, so I was by myself. He came in to let us know that what he took out of her spine was cancer. He told me that pathology was 99% sure what it was but that they needed to run some more tests on the tumor and then Malina also needed to have some more testing done.
We spent the next week having more tests done and getting her port put in. On Friday April 4 we sat down with our doctors, Dr Neville and Dr Angulo (fellow) to go over her diagnoses and treatment plan. We were told that she has Ewing's Sarcoma, a bone cancer. Hers is localized, which means it is no where else in her body and that is a really good thing. Her Chemotherapy will be for a year, which we thought was long but apparently is short. After 12 weeks the chemo will stop and her scans and tests will happen again. They will take a look at the few small residual pieces that the surgeon could not get out and determine with another surgery is necessary or not. She will be having radiation for sure. Once her scans are done, radiation and surgery is done also, then chemo will continue.
We will be having quite a few hospital stays and in the clinic a lot. Hopefully we won't have to be in much for anything other than chemo.
Finally Some Answers
On March 24 I called the orthopedic doctor and talked with his nurse. She chatted with the doctor and called me back within five minutes and told us to get Malina to the ER. Different doctors had been in to see her including neurology. This doctor pinched Malina's toes so hard that the doctors fingers were turning white and Malina had no reaction to this. As a parent, this was scary to watch.
They ordered an MRI of her spine and head but we had to wait until later in the afternoon so that she didn't have anything in her stomach. During this time Billy and I were back and forth with Jenna making sure she got to school and then I took her to a friends house to stay the night because we knew we would be staying at least that night.
Malina was out of her MRI by 6:30. The images showed a large mass in the lower part of her spine that was compressing her nerves! They had to do emergency surgery to remove this. At the time Dr Anderson (the orthopedic doctor I had saw the week before) did not know what it was, he just knew he had to get it out. She was taken away and was being prepped for emergency spinal and back surgery by 7. SCARY!!!
I've just been putting mostly facts down so I can get caught up to where we are now, but this is where my faith comes in so strong. I was actually not at the hospital when the doctor came to talk to Billy, I was out with Jenna. Billy sent me a text and told me that she was out of her MRI and that we had an answer. Immediately I felt peace! I had no idea what kind of answers we had, I had no idea what was in store for us. I just had a perfect feeling of peace come over me. And I have not lost that feeling. When I made it back in Billy told me what was going on. I broke down crying when I saw the MRI images. I was so happy to have an answer and know that she was going to get taken care of. We had a great doctor who recognized that something wasn't right and made sure we were listened to. I knew that my little girl was being watched over. I could feel the prayers and faith of so many people. I could feel my Saviors love my family at that time. Yes it was scary to know that my sweet baby was going into major surgery, but at that moment I had to put my faith and trust in the Lord and know that everything would be ok.
Tuesday, April 8, 2014
March 2014
I feel like this last month has been such a whirlwind. So much has happened and so fast. Let's see if I can get this all down into words.
The last time we remember our sweet Malina running and being normal was Friday, March 7 2014. Daddy had been away for training for the Dive Team for work and was home for the weekend. Malina was so excited to see him, actually both girls couldn't get enough of him!! Over that weekend we noticed that Malina started limping. Over the next week it became worse, to the point that it looked like she hurt when she walked. On Friday March 14 I called her pediatrician and the Dermatologist that we had been seeing for her AVM. The specialist told us to watch her and if we thought something wasn't right to take her in over the weekend. The pediatricians office called me back later and told us to go to the emergency room. We didn't get there until 7 pm that night. After the doctor came in to examine her and had no ideas, she ordered an x-ray of her legs, an ultrasound of her hips and blood work. At that point we knew it was going to be a long night. Some great friends from church came and picked Jenna up so she would be able to sleep that night, that was at 9:30 pm.
After all the results came back and they still did't see any problems, we were told that we could go home. It was now 1 a.m. Saturday morning and we were frustrated! Now what? Our energetic 19 month old hurts when she walks and her symptoms have gotten worse. What do we do now?
The next morning I went to a Stake Relief Society meeting. Everyone was shocked to see me since we got home so late but I felt like I needed to be there. I heard so many great messages. One that stuck out was that "You've Got This!" My sweet daughter was on my mind the whole time.
Later that day I remembered I had received a phone call from the hospital and they left a voice mail. Actually they had called me twice and both times I wasn't able to get to the phone. I finally listened to the messages around dinner time and called the nurse back. She quickly called me back and told me that the radiologist had looked at the x-rays that morning and saw an "abnormality, possible chip fracture" on her lower right tibia. I was told that it was in the growth plate so we HAD to go get her a walking boot that night. We had just spent 6 hours the night before in the ER and now we had to go back. And the only way orthopedics would see us is if we went to get the boot and got a referral from the ER. We went to urgent care to get the boot and spent another 3 hours there that night.
On Monday I called orthopedics to get an appointment and the soonest they could get us in at the downtown location was that Thursday. During that week she progressed worse. She did not want to stand anymore and would only crawl. And the black walking boot was no fun!
We saw doctor Anderson for her appointment on Thursday. The first thing he told me was that what the radiologist saw was nothing and would not be causing her to get worse so fast. He did another x-ray that came back normal. Next was to have an MRI done of her legs. We were able to get this done the next day, Friday.
Malina had a really hard time coming out of her sedation from the MRI. She never seemed to really wake up until Sunday afternoon. All weekend she was crabby, never slept for more than an hour at a time, didn't want to eat or drink too. It was really sad and evident that something wasn't right with Malina. It wasn't until Sunday afternoon that she was doing better. Happier and playful, but she could not crawl anymore. She would be in a sitting position but could not move her legs She also started running a fever.
Subscribe to:
Posts (Atom)