I've had this family in my heart since I met them last week. This beautiful little boy who is 7 yrs old (J) and his mom (M) have been in the hospital since July 3rd. They're a long way from home. His dad and his siblings come visit him approx three times a week. He has a tumor in his brainstem. I met them in the recovery room. He started radiation on July 11th. He had the same neurosurgeon as K. However his family decided against surgery. Since his tumor is in his brainstem Dr. L says with surgery he can only possibly remove 30%. They are giving him no more than 6 months to live.
His mom is going through a really tough time right now, as any parent would when they learn their precious child has brain cancer. She keeps beating herself up "I should have taken him to the doctor sooner." "I should have noticed the signs." I just have this deep desire to reach out to them. I talked to her briefly in the recovery room, but our time was up. K finished treatment. He's just beginning his treatment.
One of K's teachers gave me a very special rock. It's a clear rock with a little angel in it. It's a small reminder that you are not alone. I wrote a little note to M. I let her know if she needed ANYTHING to call me anytime or email me. I then stuck it with the angel rock and gave it to the radiation nurse. I wasn't too sure how M would feel receiving a gift from me since we just met and only spoke the one time. Today I got an email from her. She said that rock was just what she needed and she got it right when she needed it. It really made me feel good. But my heart is still heavy. I feel like she, and her whole family, need more support. When they're on the inpatient floor J stays in his room. He refuses to go out and walk. The family doesn't know anyone aside from the doctors and nurses they see everyday. I've been praying for this family since I met them. Now it's on my heart to show them more support. But I keep asking HOW. How can I show that they are not alone. That there are people out there praying for them. Then something came to mind today. What if I get all of my online friends to send them a card? I think back to when K was first diagnosed and how there was such an outpouring of support. The get well cards and support cards we received in those first few weeks ment so much to me. Now the question is, how do I ask everyone to send 1 card?
{Wednesday, July 18, 2007}
Making a Difference
{Friday, July 13, 2007}
Lost... Scared... What to do next
It just hit me today. K has TWO more treatments left. What happens then? Yesterday was her last clinic visit for a while. How long? I don't know. This daily trek to the hospital has become my normal. I now know nothing else. What happens next? What do I do when we don't have to drive in anymore? How do I keep myself from wondering what's going on inside K's head while she isn't being monitored every day? So many unknowns.
{Monday, July 09, 2007}
Finally, We are done
I can breath a bit easier as of this morning. K took her last dose of Temodar this evening. She has done wonderful through this whole thing. She was taking up to three pills at a time. And to think 42 days ago, when this all started, she couldn't even take one pill. We were having to break her meds up into apple juice.
This whole time I've felt horrible. I've felt like I've been poisoning my daughter. How could I give her meds that I can't even touch? I've had to wear gloves anytime I handle the pills. I've had to keep everything the pills touch and take them into the clinic to be disposed of properly. In a sense I have been poisoning her. I've been giving her high doses of a drug that kills cells. I know it's for a good reason, but it's still been difficult to do. In a couple of weeks we'll find out just how good this has been going.
K's MRI is scheduled for July 24th. We should have results within a few hours. She will go to the neurosurgeons office to have her shunt reprogrammed after the MRI. After that we will head to the clinic and get the results. I hope and pray things are good. I need to know that all of this stuff has been working. I hate the thought of putting my baby girl through all of this and it not be working.
Well we'll think about all the possibilities soon. For now we're rejoicing in the fact that she has finished her first round of chemo.
This whole time I've felt horrible. I've felt like I've been poisoning my daughter. How could I give her meds that I can't even touch? I've had to wear gloves anytime I handle the pills. I've had to keep everything the pills touch and take them into the clinic to be disposed of properly. In a sense I have been poisoning her. I've been giving her high doses of a drug that kills cells. I know it's for a good reason, but it's still been difficult to do. In a couple of weeks we'll find out just how good this has been going.
K's MRI is scheduled for July 24th. We should have results within a few hours. She will go to the neurosurgeons office to have her shunt reprogrammed after the MRI. After that we will head to the clinic and get the results. I hope and pray things are good. I need to know that all of this stuff has been working. I hate the thought of putting my baby girl through all of this and it not be working.
Well we'll think about all the possibilities soon. For now we're rejoicing in the fact that she has finished her first round of chemo.
{Thursday, July 05, 2007}
Blood
On the way home from the hospital this morning I was listening to the radio. They had a special guest from the blood bank. They were talking about donating blood and how they always need blood but they need it so much more in the summer. People get busy with their family vacations and activities which means a lot less people donate blood. Also, as so many people are outside, enjoying the wildnerness, there are more accidents and an increased need for blood. They figured 1 in 3 people will need blood at least once in their lifetime.
I never thought about donating blood before. My mom is a fanatic about donating but it just wasn't something I wanted to do. Just the thought of having to get hooked up and have them drain your blood was too much for me to think about. Then something happened. K got sick. She needed a little bit of blood during her surgeries, but that's to be expected. Donating blood still didn't cross my mind. Then almost two weeks ago K needed a blood transfusion. Her treatment is obviously killing many cells in her body. Unfortunately, along with the bad cancer cells, it's also attacking her good cells. Her red blood cells were too low so she needed a transfusion. I couldn't believe the difference I saw in her almost immediately. Before her transfusion she was really tired all of the time and didn't want to do much but lay on the couch watching movies. She would also have trouble waking up from her sedation every morning because she was so tired. And trying to get her up first thing in the morning, so she could go in for her radiation treatment, was horrible. I was having to take an ice cube and put it in her shirt. And half the time that wouldn't even faze her because she was so exhausted. Post transfusion she was happy and smiling. She was running all over the place and wanting to go for rides down the halls of the hospital. When we got home she was too hyped up to go to sleep. Good thing it was a Friday night so we could all sleep in the next morning.
Anyway, her transfusion got me thinking. Who knows how many more times she will need to get blood during this journey of hers? How many other kids batteling cancer need transfusions? How many other people, aside from these kids will need blood for other reasons? My baby girl used 200 cc's of blood during her transfusion. That's because she's so small. The bag came with 300 cc's. Obviously they couldn't save the remaining 100 cc's for the next person. So that's 100 cc's that will never be used. That's 100 cc's that someone else needs. So this afternoon, I'm going to head down to the blood bank and donate. It's my first time and I'm pretty nervous. But I just keep thinking, if someone hadn't donated blood my baby girl wouldn't have been able to have her transfusion when she needed it. It's the least I can do. And I'd like to urge everyone to donate blood this summer. It could save someone's life.
I never thought about donating blood before. My mom is a fanatic about donating but it just wasn't something I wanted to do. Just the thought of having to get hooked up and have them drain your blood was too much for me to think about. Then something happened. K got sick. She needed a little bit of blood during her surgeries, but that's to be expected. Donating blood still didn't cross my mind. Then almost two weeks ago K needed a blood transfusion. Her treatment is obviously killing many cells in her body. Unfortunately, along with the bad cancer cells, it's also attacking her good cells. Her red blood cells were too low so she needed a transfusion. I couldn't believe the difference I saw in her almost immediately. Before her transfusion she was really tired all of the time and didn't want to do much but lay on the couch watching movies. She would also have trouble waking up from her sedation every morning because she was so tired. And trying to get her up first thing in the morning, so she could go in for her radiation treatment, was horrible. I was having to take an ice cube and put it in her shirt. And half the time that wouldn't even faze her because she was so exhausted. Post transfusion she was happy and smiling. She was running all over the place and wanting to go for rides down the halls of the hospital. When we got home she was too hyped up to go to sleep. Good thing it was a Friday night so we could all sleep in the next morning.
Anyway, her transfusion got me thinking. Who knows how many more times she will need to get blood during this journey of hers? How many other kids batteling cancer need transfusions? How many other people, aside from these kids will need blood for other reasons? My baby girl used 200 cc's of blood during her transfusion. That's because she's so small. The bag came with 300 cc's. Obviously they couldn't save the remaining 100 cc's for the next person. So that's 100 cc's that will never be used. That's 100 cc's that someone else needs. So this afternoon, I'm going to head down to the blood bank and donate. It's my first time and I'm pretty nervous. But I just keep thinking, if someone hadn't donated blood my baby girl wouldn't have been able to have her transfusion when she needed it. It's the least I can do. And I'd like to urge everyone to donate blood this summer. It could save someone's life.
{Monday, July 02, 2007}
Another Deployment
Well J's gone again. He left earlier today. I don't think it's really hit me yet. Last time he deployed I was a mess. I was crying all of the time and could barely keep my mind on my work. This time around I haven't even come close to crying. Not even when Kelsey broke down in the car. Don't get me wrong, I'm a bit sad, but nothing like I normally am.
Anyway, I actually took some pictures today. I have J getting ready to be dropped off for his deployment and the two little ones sitting outside while daddy dropped off his bags. R didn't want to go. I don't think he's handling this whole deployment thing very well. He seems to have distanced himself a few weeks ago.
Anyway, I actually took some pictures today. I have J getting ready to be dropped off for his deployment and the two little ones sitting outside while daddy dropped off his bags. R didn't want to go. I don't think he's handling this whole deployment thing very well. He seems to have distanced himself a few weeks ago.