I know not by what method rare
But this I know, God answers prayer.
I know that he has given his Word
Which tells me prayer is always heard
And will be answered soon or late
And so I pray and calmly wait.
I know not if the blessing sought
Will come in just the way I thought
But leave my prayers with him alone
Whose will is wiser than my own
Assured that he will grant my quest
Or send some answer far more blessed.
Eliza M. Hickok
I came across this poem today and obviously it really hit home. I just want to thank all of you that are praying for my little boy. It means the world to me. I have heard a couple people say all they can do is offer prayers and I think there is nothing greater. So, thank you again!
Sunday, December 29, 2013
Saturday, December 21, 2013
Sigh...
After Beckham's 4th round of chemo I was so amazed at how well he was doing! You would of never guessed that he just had been in the hospitals the last couple days. I was naturally very happy about this. After the previous round of chemo it just made me sick thinking about how awful his treatments can make him feel. This round was easy...it was nice. Not entirely nice...but better. Well, a week ago Beckham woke up acting a little different. His energy was about the same...but he didn't want to eat. I checked his temperature. I was immediately nervous. Brian was out of town for the weekend and I potentially had a little boy getting sick. I knew it was very likely he was coming down with something since his ANC was 0 and with no immune system it doesn't take much to knock you down.
The rule they give us is to call if he has a temperature of 100.4 for over an hour or plan on just coming in if he hits 101. Beckham was at about 100.2 most of the day. When they are neutropenic though a fever is not always manifested so you have to watch for other symptoms. Well, I called Primary Children's ER and spoke with a charge nurse at about 7pm. I knew his temp would most likely go up in the night. They told me to bring him right in and thankfully my brother and his wife were able to come right over and watch Navy. My brother decided to head up with me and I'm so glad he did. It was nice to have family with me while I'm stressing out with what could be wrong.
After a few tests and nothing clearly showing up. They decided to admit him. Beckham burst into tears when I told him we were staying at the hospital. He just wanted to go home. I felt so bad for him.
Beckham ended up staying till Tuesday afternoon. The nurses continued to take blood cultures to see if anything would show up. Nothing did though. His fevers would spike and we would have moments where he looked sick. They told me that mostly likely it was just a cold.
When you are neutropenic and when they are unsure of the cause of sickness they put you on a general antibiotic. Between that and two blood (red and platelet) transfusions he seemed to be getting better each day. :)
Brian got back in town last Sunday and was able to come up to the hospital to give me a break. It was really hard for me to leave Beckham this time. He cried when I told him I had to leave and as I walked out he would yell out for me. I eventually had to stop walking in and just keep walking. It broke my heart.
I am sure I drive Beckham nuts, but I hover over him when we are home. I watch his every move looking for any changes or signs that anything is wrong. I try to relax, but it's hard. I worry about him all the time. With that being said he is responding really well to his treatments so far. He has a lot a head of him still, but he is one tough little guy.
The rule they give us is to call if he has a temperature of 100.4 for over an hour or plan on just coming in if he hits 101. Beckham was at about 100.2 most of the day. When they are neutropenic though a fever is not always manifested so you have to watch for other symptoms. Well, I called Primary Children's ER and spoke with a charge nurse at about 7pm. I knew his temp would most likely go up in the night. They told me to bring him right in and thankfully my brother and his wife were able to come right over and watch Navy. My brother decided to head up with me and I'm so glad he did. It was nice to have family with me while I'm stressing out with what could be wrong.
After a few tests and nothing clearly showing up. They decided to admit him. Beckham burst into tears when I told him we were staying at the hospital. He just wanted to go home. I felt so bad for him.
Beckham ended up staying till Tuesday afternoon. The nurses continued to take blood cultures to see if anything would show up. Nothing did though. His fevers would spike and we would have moments where he looked sick. They told me that mostly likely it was just a cold.
When you are neutropenic and when they are unsure of the cause of sickness they put you on a general antibiotic. Between that and two blood (red and platelet) transfusions he seemed to be getting better each day. :)
Brian got back in town last Sunday and was able to come up to the hospital to give me a break. It was really hard for me to leave Beckham this time. He cried when I told him I had to leave and as I walked out he would yell out for me. I eventually had to stop walking in and just keep walking. It broke my heart.
I am sure I drive Beckham nuts, but I hover over him when we are home. I watch his every move looking for any changes or signs that anything is wrong. I try to relax, but it's hard. I worry about him all the time. With that being said he is responding really well to his treatments so far. He has a lot a head of him still, but he is one tough little guy.
Friday, December 6, 2013
Day 3
Day 3 is here and we are getting close to finishing round 4...well kind of close. One of his chemos runs for 24hrs straight per bag...making just the one run 72 hours straight. I have had a harder time with him getting chemo this time around. Sad things have happened recently in one of my cancer support groups and although I am trying to stay positive I have moments where I am just terrified of what Beckham's fate could be. Maybe the holidays have a part in that too. Since we don't know the outcome of this all...I have this mission to make every holiday, birthday, event the best I can make it. I'm in memory mode...creating memories that is...
Anyway, the hospital gives us write ups of the medications that they give Beckham. I, of course, research them more. One of his chemos happens to have a couple nicknames...."red death" and "red devil"....just what a mother wants to read. Why oh why...ugh...I am putting my trust in the doctors though that they know the proper way to heal Beckham. I am doing my best to use alternative methods I have read about, and approved with his doctors, as well. Sigh....I'm one worn out mama.
I think he is over it. I take way too many pictures. The boy needs some space.
Anyway, the hospital gives us write ups of the medications that they give Beckham. I, of course, research them more. One of his chemos happens to have a couple nicknames...."red death" and "red devil"....just what a mother wants to read. Why oh why...ugh...I am putting my trust in the doctors though that they know the proper way to heal Beckham. I am doing my best to use alternative methods I have read about, and approved with his doctors, as well. Sigh....I'm one worn out mama.
I think he is over it. I take way too many pictures. The boy needs some space.
Wednesday, December 4, 2013
Round 4
This morning Beckham rolled into the hospital hidden under warm blankets and overnight bags. Rather than wear a beanie and a mask in cold weather he almost always opts out to just be covered over with blankets.
For this round Beckham will be here for 3 days. He's getting 3 chemo fluids each day. The common effect of all 3 is they destroy cancer cells by interfering with the cancer cells growth cycle.
They will be giving him medication for nausea which is the most common side effect.
On a good note the doctor and nurses say that this round is considered a "lighter" round. Meaning that Beckham shouldn't get "really" sick afterwards. They say it's not quite as light as rounds 1&2 but not as heavy as round 3.
Beckham has been so full of energy lately it's really hard to imagine that he has cancer. I'm trying to do my best to take advantage of this time with him.
It's a constant challenge to figure out what Beckham will eat. It's a blessing the cooks downstairs are patient. For dinner tonight all Beckham wanted was club crackers and pepperoni. After bringing up the 3rd! Plate of pepperoni he was finally full. On the 3rd order I had to assure the cook Beckham was eating them and this was no joke:)
- Posted from my iPhone
For this round Beckham will be here for 3 days. He's getting 3 chemo fluids each day. The common effect of all 3 is they destroy cancer cells by interfering with the cancer cells growth cycle.
They will be giving him medication for nausea which is the most common side effect.
On a good note the doctor and nurses say that this round is considered a "lighter" round. Meaning that Beckham shouldn't get "really" sick afterwards. They say it's not quite as light as rounds 1&2 but not as heavy as round 3.
Beckham has been so full of energy lately it's really hard to imagine that he has cancer. I'm trying to do my best to take advantage of this time with him.
It's a constant challenge to figure out what Beckham will eat. It's a blessing the cooks downstairs are patient. For dinner tonight all Beckham wanted was club crackers and pepperoni. After bringing up the 3rd! Plate of pepperoni he was finally full. On the 3rd order I had to assure the cook Beckham was eating them and this was no joke:)
- Posted from my iPhone
Friday, November 22, 2013
ANC and Stem Cells
Okay, so you are probably wondering a couple things...what is an ANC and why is he getting daily shots and going up to the hospital for blood work everyday.
What is an ANC?
"The absolute neutrophil count (ANC) is a lab test measuring the number of neutrophils present in a blood sample, measured per microliter. This test provides important information about a patient's immune status, as neutrophils play a key role in the human immune system.
If the absolute neutrophil count is above 1,500, it is within normal range. Counts below 1,000 indicate mild neutropenia. The patient is at risk for infection, but the risk is relatively low as long as the patient exercises commonsense precautions. Counts of 500 or less are in the danger zone. The patient's immune system is highly compromised and the patient will not be able to fight off infection. For the patient's safety, contact with other people should be limited to individuals known to be healthy."
-http://m.wisegeek.com/what-is-absolute-neutrophil-count.htm
Beckham is getting daily shots and blood drawn because they want to start harvesting his stem cells this week. They need to collect quite a bit so they really need to get his white cells up high. The bone marrow team is closely watching him and once he gets to the levels they want he will be admitted for surgery to get a separate pic line put in for the cell harvest and then we will be at the hospital for a few days while they collect.
What is an ANC?
"The absolute neutrophil count (ANC) is a lab test measuring the number of neutrophils present in a blood sample, measured per microliter. This test provides important information about a patient's immune status, as neutrophils play a key role in the human immune system.
If the absolute neutrophil count is above 1,500, it is within normal range. Counts below 1,000 indicate mild neutropenia. The patient is at risk for infection, but the risk is relatively low as long as the patient exercises commonsense precautions. Counts of 500 or less are in the danger zone. The patient's immune system is highly compromised and the patient will not be able to fight off infection. For the patient's safety, contact with other people should be limited to individuals known to be healthy."
-http://m.wisegeek.com/what-is-absolute-neutrophil-count.htm
Beckham is getting daily shots and blood drawn because they want to start harvesting his stem cells this week. They need to collect quite a bit so they really need to get his white cells up high. The bone marrow team is closely watching him and once he gets to the levels they want he will be admitted for surgery to get a separate pic line put in for the cell harvest and then we will be at the hospital for a few days while they collect.
This week
Well there is some good news!!! A couple nights ago he sprang to life. He was asking for food, laughing and wanting to get up and move around.
In this picture he was saying he was a dinosaur and he was coming to get me.
Look at that smile!!!! I'm so happy that it's back. It was hard seeing him so out of it and just miserable for the last week.
Since Sunday, Beckham has had his blood drawn daily to check his blood counts. He has been really low. This is normal though. After chemo they expect his ANC to drop down to 0. Early this week it was around 300 and the last couple days he has been at zero. It has definitely been stressful in our home since Navy and I have been sick and have had fevers. Luckily we are feeling better and Beckham hasn't gotten sick yet. He does have a cough and a low temp, but nothing they are worried about yet. I am hoping he stays well enough and he doesn't get sick and have to be admitted.
This morning I bundled him up in the stroller. It's pretty cold at 730 in the morning!!! The wind was crazy too.
Hanging out at the clinic. Finding Nemo was on and he was totally fixated.
Counts came back and it ended up he needed a platelet transfusion. This will make number 2 for the week in platelets and he has had a red blood transfusion as well. Chemo does a number on your body!!!!! His ANC is at 0.13 today...up from 0.03 from yesterday. Beckham has been getting daily shots of Neupogen. This helps his white count rise faster then it would on his own. It is rough giving him shots. He flinches now when we touch his legs. He always tells us, "no pokes!" My heart about broke after I gave him his shot and he burst into tears and kept saying, "you hurt me mommy, you hurt me." It causes him joint pain too. They say it is like having severe growing pains. Anyway, I'll go more into that in a little bit.
Wreck It Ralph is on and he is kicking back eating snacks and cuddling up to his blankies! The transfusion is almost done and we will be done until tomorrow.
In this picture he was saying he was a dinosaur and he was coming to get me.
Look at that smile!!!! I'm so happy that it's back. It was hard seeing him so out of it and just miserable for the last week.
Since Sunday, Beckham has had his blood drawn daily to check his blood counts. He has been really low. This is normal though. After chemo they expect his ANC to drop down to 0. Early this week it was around 300 and the last couple days he has been at zero. It has definitely been stressful in our home since Navy and I have been sick and have had fevers. Luckily we are feeling better and Beckham hasn't gotten sick yet. He does have a cough and a low temp, but nothing they are worried about yet. I am hoping he stays well enough and he doesn't get sick and have to be admitted.
This morning I bundled him up in the stroller. It's pretty cold at 730 in the morning!!! The wind was crazy too.
Hanging out at the clinic. Finding Nemo was on and he was totally fixated.
Counts came back and it ended up he needed a platelet transfusion. This will make number 2 for the week in platelets and he has had a red blood transfusion as well. Chemo does a number on your body!!!!! His ANC is at 0.13 today...up from 0.03 from yesterday. Beckham has been getting daily shots of Neupogen. This helps his white count rise faster then it would on his own. It is rough giving him shots. He flinches now when we touch his legs. He always tells us, "no pokes!" My heart about broke after I gave him his shot and he burst into tears and kept saying, "you hurt me mommy, you hurt me." It causes him joint pain too. They say it is like having severe growing pains. Anyway, I'll go more into that in a little bit.
Wreck It Ralph is on and he is kicking back eating snacks and cuddling up to his blankies! The transfusion is almost done and we will be done until tomorrow.
Monday, November 18, 2013
Round 3
Round 3 of chemo was a freaking beast. They prepped us pretty well. We were told multiple times that round 3 on his treatment plan is very rough on kids. The first couple days of treatment I thought maybe we were the lucky ones and we broke the norm. About day three of this round is when it all started. His appetite was zero and he would throw up from time to time. He still had some energy to move around and play. That didn't drop until when we got home.
During a round of chemo. Beckham is funny and likes his bed put up on both sides. He is like a little taco. Brian told me that he tried to put up just one side of the bed and make a big slide. It's crazy how high the beds can raise up. Haha. He definitely makes the nurses and doctors nervous with how active he is.
Playing Star Wars Operation.
Sorry if this picture is a little much. It's really sad for me to see this picture. He wants these pink buckets by his side all the time now.
Leaving the hospital! You can tell he is just exhausted. He is so over it and I do not blame him one bit.
Before we left we got a visit from Miss Bella and my friend Tiffany. It's so cute watching these two play. He ran up to her and they gave each other a little hug. His energy definitely perked up seeing her. They snacked on some Lucky Charms and Beckham was picking out the marshmallows and giving them to Bella. I think he may have a crush. :)
A family friend sent this cape to Beckham. I have to admit I was a little confused when I saw the "R" on the back. After reading the card that went along with the cape it stated that the "R" stands for RECNAC. It is cancer spelled backwards. They explained that in their home, when their mother had cancer, they found it less scary and almost funny to use the work "RECNAC" instead. Beckham had wearing the cape around the house.
My sweet little boy. This picture breaks my heart. He looks like he is sleeping, but he is just laying there on the couch. Besides that first day home...he has been laying around. We have to carry him from
his bed to the couch. He doesn't want to move and you have to help him sit up. He has medicine to help with the nausea and pain but he has a hard time keeping anything in. We give him IV fluids at night to help him stay hydrated. I have been doing a lot of research on oils and such...I am hoping they are helping him some!!!!
The two pictures above are Beckham back up at clinic. Last Friday Beckham was still not eating and just seemed miserable. So, I had Brian take him up to Children's to have them look him over. They just sent us home more medicine to increase his appetite. I was a little frustrated with this since he has a really hard time taking meds right now. He has started to nibble a little more though and I'm really hoping that picks up so he does not have to get a feeding tube.
During a round of chemo. Beckham is funny and likes his bed put up on both sides. He is like a little taco. Brian told me that he tried to put up just one side of the bed and make a big slide. It's crazy how high the beds can raise up. Haha. He definitely makes the nurses and doctors nervous with how active he is.
Playing Star Wars Operation.
Sorry if this picture is a little much. It's really sad for me to see this picture. He wants these pink buckets by his side all the time now.
Leaving the hospital! You can tell he is just exhausted. He is so over it and I do not blame him one bit.
Before we left we got a visit from Miss Bella and my friend Tiffany. It's so cute watching these two play. He ran up to her and they gave each other a little hug. His energy definitely perked up seeing her. They snacked on some Lucky Charms and Beckham was picking out the marshmallows and giving them to Bella. I think he may have a crush. :)
A family friend sent this cape to Beckham. I have to admit I was a little confused when I saw the "R" on the back. After reading the card that went along with the cape it stated that the "R" stands for RECNAC. It is cancer spelled backwards. They explained that in their home, when their mother had cancer, they found it less scary and almost funny to use the work "RECNAC" instead. Beckham had wearing the cape around the house.
My sweet little boy. This picture breaks my heart. He looks like he is sleeping, but he is just laying there on the couch. Besides that first day home...he has been laying around. We have to carry him from
his bed to the couch. He doesn't want to move and you have to help him sit up. He has medicine to help with the nausea and pain but he has a hard time keeping anything in. We give him IV fluids at night to help him stay hydrated. I have been doing a lot of research on oils and such...I am hoping they are helping him some!!!!
The two pictures above are Beckham back up at clinic. Last Friday Beckham was still not eating and just seemed miserable. So, I had Brian take him up to Children's to have them look him over. They just sent us home more medicine to increase his appetite. I was a little frustrated with this since he has a really hard time taking meds right now. He has started to nibble a little more though and I'm really hoping that picks up so he does not have to get a feeding tube.
Saturday, November 9, 2013
Tests...Surgery...Chemo
Before his hearing test!
One of his heroes! The one any only Spider-Man!!!
Waiting for his MRI
Sedated and ready to start!
Admitted and waiting for chemo to start up.
So, here we are ready to start round 3 of chemo. We are close to the two month mark of diagnosis. It's crazy to me how what is "normal" has changed so much since then. This week Beckham has had a hearing test, a MRI, MIBG scan and a bone marrow biopsy and aspirate. I am amazed that he is not going crazy. It has been a busy last few days.
So, you are probably wondering how his tests went! His hearing test was amazing. They told us he test above average. This made me so happy since the chemo he gets can damage his hearing. His scans went good as well. The amount of cancer in his body is less. This makes me very happy, but I am still one concerned mother.
I had many questions for his doctors this morning. Maybe I am weird, but I like to know what I am up against. I don't care if it is not what I want to hear. I want to know so I can mentally prepare myself.
Beckham has quite the road ahead of him. Neuroblastoma is a very aggressive cancer and the treatment he is getting is pretty intense. The odds are not totally in Beckham's favor and this terrifies me. If Beckham beats this monster, he is pretty much guaranteed to have some significant health issues. Ugh...more on that later.
Beckham is strong though! He is definitively a fighter!
Thursday, November 7, 2013
KSL
Today we were able to meet with KSL news to talk about the Bloggers Give Back Event going on this weekend. If you would like more info please look up www.bloggersgivebackevent.com and watch this clip. :)
http://www.ksl.com/?sid=27542256&nid=1194
http://www.ksl.com/?sid=27542256&nid=1194
Halloween
Halloween was a ton of fun for Beckham this year. I initially thought we were not going to be able to take him out since his counts were so low. Blood tests said he was severely neutropenic. I asked for ideas of what I could do for my little boy and I have to say that I was so overwhelmed with all of the ideas. Thank you all for the help. I am very grateful for such good family and friends.
Beckham had a blood test Halloween day and surprisingly his counts jumped up to normal levels! Here he is with two of his cousins. Love these little super heroes.
Mr. Ironman trick or treating.
Beckham was so concerned with my "yips!" Haha. "What happened? You bleeding?"
Navy and Beckham playing at the family Halloween party.
Beckham had a blood test Halloween day and surprisingly his counts jumped up to normal levels! Here he is with two of his cousins. Love these little super heroes.
Mr. Ironman trick or treating.
Beckham was so concerned with my "yips!" Haha. "What happened? You bleeding?"
Navy and Beckham playing at the family Halloween party.
Tuesday, October 29, 2013
Any ideas?
It looks like this little super hero of mine is going to have to stay in for Halloween this year. He is severely neutropenic still, as of Monday. :( His counts are expected to rise each day, but I don't think they will be at a level where they are high enough to be out and about. (I could be wrong though!) Here is my question though....any fun Halloween ideas...activities, shows, crafts, games, etc. I want to make it a fun day for him. Any suggestions are welcome!!!
Thank you!!!
Wednesday, October 23, 2013
Round 2
Round 2 of chemo went really really well. His appetite didn't go down much and he drank plenty of fluids!!!! It's funny how much wet diapers and eating pb&j sandwiches are so exciting. (Yes, he is still in diapers for now. We were potty training when we found out about Beckham's diagnosis.)
Beckham has had tons of energy through this treatment as well. They want you to try and get your child out of bed at least 3 times a day while at the hospital and I think we was out of his bed the majority of the time.
Beckham does still have a limp. :( He has pain in his right leg when he walks and his joints are very tender. It's very hard to see him walk around. He manages well though and being the tough guy he is always tells me, "I'm good mommy." They tell us it could be a number of things...chemo...cancer or the medications he's taking.
FaceTime with his sister!
Arts and crafts!
Chemo....
Train whistle surprise while watching Thomas...thanks Krystal!!!!
Navy visiting...the pop machine stopped her in her tracks though. She could understand why it wasn't giving her juice.
Oh...how I wish I could of gotten this recorded. The doctors were in checking him over and discussing treatments. He wasn't the happiest with them being there. After they left he got a very serious look on his face and starting punching his fist into his hand. It made me laugh out loud and he just turned and smiled at me. (Where does he learn this stuff?)
Leaving the hospital!!! Round 2....check!!!
Feeling well enough to play in a special play corner they have for the kids. :)
Helping Dad paint!!!
He is my little climber!!!
"Look mom...take a picture of me! I'm a monkey!!! Eeee! Eeee!"
Beckham has had tons of energy through this treatment as well. They want you to try and get your child out of bed at least 3 times a day while at the hospital and I think we was out of his bed the majority of the time.
Beckham does still have a limp. :( He has pain in his right leg when he walks and his joints are very tender. It's very hard to see him walk around. He manages well though and being the tough guy he is always tells me, "I'm good mommy." They tell us it could be a number of things...chemo...cancer or the medications he's taking.
FaceTime with his sister!
Arts and crafts!
Chemo....
Train whistle surprise while watching Thomas...thanks Krystal!!!!
Navy visiting...the pop machine stopped her in her tracks though. She could understand why it wasn't giving her juice.
Oh...how I wish I could of gotten this recorded. The doctors were in checking him over and discussing treatments. He wasn't the happiest with them being there. After they left he got a very serious look on his face and starting punching his fist into his hand. It made me laugh out loud and he just turned and smiled at me. (Where does he learn this stuff?)
Leaving the hospital!!! Round 2....check!!!
Feeling well enough to play in a special play corner they have for the kids. :)
Helping Dad paint!!!
He is my little climber!!!
"Look mom...take a picture of me! I'm a monkey!!! Eeee! Eeee!"
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