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!
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