Today Raylee had a follow-up appointment with her surgeon, Dr. B. The appointment went well and Raylee's doing amazing! It is hard to explain how well she is doing because it is such a miracle and it's still difficult to comprehend everything. So much happened so quickly and it was difficult to keep up with the chaos of Chemo, keeping educated on cancer treatment, trying to make the best decisions, juggling being home for Jorja and at the hospital with Raylee, and keeping hope alive while scrapping for any strength I could find. All this choas has ended and now its hard to adjust to a more normal routine because I feel as if everything is still catching up to me. The reality of what we've gone through is still sinking in.
However, what's important is that Raylee is recovering so well! She has even gained 2 lbs! She has never weighed more than 25 lbs. When we last left the hospital she was at 24 lbs. Today she is at 26 lbs. I am so proud of her! She is sleeping better than she was. She still gets scared and has bad dreams but its manageable and the intensity of her fear has subsided. She seems to be playing even more than before her diagnosis, and doesn't whine like she use to. She is down right a happier child who enjoys herself. I too, am filled with so much relief I have a deep joy within myself that goes to my core! What a blessing! I am so thankful for these miricales and for good health. This wouldn't never have happened if it weren't for the Lord Jesus Christ. We know he carried Raylee through this experience and we pray he will continue to carry her through recovery and releasing all the stress this has caused to her and us.
We don't have another surgical follow-up until November and her surgeon said he would see Raylee during her oncology follow-up to make it easier for us. This means we have 1 month before our next follow-up and that one is with urology. An entire month without any hospital visits (of course unless Raylee gets a fever or ill) we are so excited, it has been a long time since we've even went a week without the hospital being part of our routine!
Introducing Raylee and Jorja.....sisters! Raylee is our cancer baby and Jorja is her sister's keeper.
Tuesday, August 30, 2011
Saturday, August 27, 2011
Doing Better than GREAT!
Yesterday we checked into Same-Day-Surgery, but not for a surgical procedure. Raylee was scheduled for a Cystrometrogram or CMG, which is a urodynamic procedure. This was a type of X-ray video to measure and analyze Raylee's bladder function. We were at the hospital for a long period of time. The test however is only an hour. This procedure is done in one of the surgical rooms so the staff have to scrub in, only this time they allowed Jerry and I to scrub in with them. We had to wear these white clothe like suits called 'bunny suits,' and the funny blue caps, Raylee thought it was silly. During the procedure we had to wear lead vests. There were around 6 medical staff. Raylee was lightly sedated for the procedure but she stayed completely awake and cried for most of it.
The results of the CMG procedure show that Raylee's bladder is larger than average but not too large that there's a health risk. It does function which is the news we wanted. I am so happy about this. This means no surgeries on her bladder. We will monitor how frequently she is able to potty and in a few weeks we have a follow-up ultrasound to ensure fluid us not backing into her kidneys. So far so good! She is doing great and I think her bladder just needed time to heal. This also means no more catheders! I can't believe how fast Raylee is bouncing back. She is sleeping better without any night terrors, which means everyone in the family is sleeping better, which means we are all happier! :) Raylee also is able to take a normal bath. Her first real bath since she was diagnosed was the other night and it lastest about an hour. She was really happy to be in the tub and splashed and kicked the water. She found that mermaid within herself again. I was soaked as well as the entire bathroom but I didn't care, she was having a blast! It was wonderful to see her happy and laughing which is something we are seeing more and more of each day.
Jorja went back to school recently. She will also start her cheerleading and dance classes soon. I am hoping these activities will boost her self-esteem as well as help her learn teamwork. She is excited for school but struggles getting out of bed. She isn't even a teen and getting out of bed for school is already a fight.
Anyway our prayers and thoughts are with those in the eastern states, to our family and friends there we hope you are safe and hope Hurricane Irene passes by fast with minimum damage. God be with you always.
The results of the CMG procedure show that Raylee's bladder is larger than average but not too large that there's a health risk. It does function which is the news we wanted. I am so happy about this. This means no surgeries on her bladder. We will monitor how frequently she is able to potty and in a few weeks we have a follow-up ultrasound to ensure fluid us not backing into her kidneys. So far so good! She is doing great and I think her bladder just needed time to heal. This also means no more catheders! I can't believe how fast Raylee is bouncing back. She is sleeping better without any night terrors, which means everyone in the family is sleeping better, which means we are all happier! :) Raylee also is able to take a normal bath. Her first real bath since she was diagnosed was the other night and it lastest about an hour. She was really happy to be in the tub and splashed and kicked the water. She found that mermaid within herself again. I was soaked as well as the entire bathroom but I didn't care, she was having a blast! It was wonderful to see her happy and laughing which is something we are seeing more and more of each day.
Jorja went back to school recently. She will also start her cheerleading and dance classes soon. I am hoping these activities will boost her self-esteem as well as help her learn teamwork. She is excited for school but struggles getting out of bed. She isn't even a teen and getting out of bed for school is already a fight.
Anyway our prayers and thoughts are with those in the eastern states, to our family and friends there we hope you are safe and hope Hurricane Irene passes by fast with minimum damage. God be with you always.
Friday, August 19, 2011
On the Road to Recovery
Lately it has been difficult to blog regularly. I am so tired and exhausted to the point that my bones ache. Some of my own health issues already cause fatigue but only having an average of 4 hours a sleep at night is not helping matters; and these 4 hours are not consecutive. Raylee hasn't slept very well since we brought her home from the hospital. It is like having a newborn baby that can walk and talk....well actually run away from you, scream at you, push you away, and throw things at you. Raylee hasn't been very happy lately. Like I said before it is like she is having withdrawals and the bladder medication she is on causes problems sleeping. Jorja said the side effects of the medications should read, "Causes trouble sleeping for the entire family." LOL. I thought that was funny. We definately need to find something to laugh about these days. Raylee isn't on any medications right now except for her antibiotic, which she takes because her immune system isn't quite strong enough. Her oncologist said it takes at least 3 months for the bone marrow to heal after the last Chemo then her immune system should be back to normal. She doesn't want to take the medication and puts up a fight but I just tell her I know you don't want to take it but you have to. Then she usually takes it. We still mix them with highly concentrated snow cone syrup-Raylee likes the Grape, Wild Cherry, and of course Tiger's Blood flavors.
I was able to go to work this week. Raylee is recovering well despite the lack of sleep so I went to work. Jorja and Raylee are watched by their grandma Patty who they adore. Being with grandma and going to grandma's house has helped both of them. Little by little, day by day, Raylee does a little better at night. Let me try to explain how horrible her nights are. She would scream and cry loudy for about 2 hours for her mommy, daddy, and Jorja even though we would be right there. She would scream so loud I was sure the neighbors could hear her. She would usually finally fall asleep around 2 am and then wake around 4 am screaming and crying again. This meant if anyone in the family had fallen asleep at any time they were woken up by a cry that reflected terror. Raylee would be so scared and confused. She never wanted to sleep in her bed, she wouldn't want you by her, and she would run through the house until she found a corner to hide herself. We would panic because she would run, in the dark, carelessly because she was somewhat asleep still and we feared she was going to hurt herself. If you grabbed her she would kick, hit, and fling her body around. I never knew she could be so strong! She is stronger then me! If we tried to hold her she would scream, 'NO, Let me go!' If she could find anything she could lift she would throw it at you. It was just like she was possessed by a little demon child because this behavior is nothing like Raylee. She really is a happy child. She has a lot of anxiety and fear but it is starting to get better. She will now sleep in her bed (you usually have to lay by her until she falls asleep) and she isn't having the night terrors at the same degree as she did this last week. Jerry said 'There is light at the end of the tunnel.' Yes there is, but has been and still is a really long tunnel. I have never had my patience tested at this level but I know that Raylee will recover and be more like Raylee.
Yesterday Raylee had another ultrasound to check her bladder and kidneys. Last week fluid wasn't draining from her kidneys so her urologist wanted to check on them. They are doing so much better as there is only a little fluid in one kidney but they appear to be functioning and draining well. They taught me how to cycle her bladder. This basically is clamping the tube from her catheder every hour so the bladder can fill with urine and then you unclamp it so it releases. This will help the bladder muscles begin to fill full because when someone is cathed all the time like Raylee is right now, the bladder doesn't get the full feeling which it should. This will help wake up her bladder. Then next week we have a possible additional ultrasound and bladder test which is done through same day surgery because she will be sedated for it. We are hoping Raylle will not need the bladder test but if she isn't able to potty on her own she will. Either Tuesday or Wednesday the catheder will be removed to allow her body the ability to try to go on her own. :(
It definately has been a rough and long week but it was mentally good for my girls to spend time with grandma like they use to, and pychologically good for me to go to work. My co-workers and management have been so great to work with through this. Jerry's have been as well. We are really fortunate because I do know some people that when their child was diagnosed with cancer and they missed a lot of work they were let go. Although I was going to work with as little as 4 hours of sleep a night it really was energizing in a way.
Jorja is really excited and having trouble sleeping as well. Her's is because of the excitement of school starting next week. We met her teacher this last week and explainrf what Jorja has been through this summer and explained if she is really tired one day it is because her sister screamed all night. Her teacher is amazing. She told Jorja if she is ever tired she can go to the office to the sick room and take a nap, or, if she just needs to talk they can just talk. Jorja's class is the gifted class, although she isn't labeled a 'gifted' student she does really well in school. We are so excited for her to be in this class. Each student has their own computer on their desks with a flat screen monitor. It must be part of a pilot program this year. Jorja is trilled about this rare experience and will learn how to operate computers better. I am excited for her to simply be in school, be around kids her own age, and to be a kid!
This road to recovery is going to be a long bitter-sweet ride for everyone. It has been difficult trying to get our lifes back to normal. It is going to take as much energy to change our lifes again as it did to except Raylee's illness. At least we are not going through Chemo anymore---it definately could be worse! I would rather deal with a child suffering through night terrors then Chemo! I would rather deal with taking her for many many follow-ups then staying another night in the hospital. She is such a little trooper! It makes me feel so good inside to know that her recovery, and ability to defeat cancer, is inspiring and making so many people happy!
I was able to go to work this week. Raylee is recovering well despite the lack of sleep so I went to work. Jorja and Raylee are watched by their grandma Patty who they adore. Being with grandma and going to grandma's house has helped both of them. Little by little, day by day, Raylee does a little better at night. Let me try to explain how horrible her nights are. She would scream and cry loudy for about 2 hours for her mommy, daddy, and Jorja even though we would be right there. She would scream so loud I was sure the neighbors could hear her. She would usually finally fall asleep around 2 am and then wake around 4 am screaming and crying again. This meant if anyone in the family had fallen asleep at any time they were woken up by a cry that reflected terror. Raylee would be so scared and confused. She never wanted to sleep in her bed, she wouldn't want you by her, and she would run through the house until she found a corner to hide herself. We would panic because she would run, in the dark, carelessly because she was somewhat asleep still and we feared she was going to hurt herself. If you grabbed her she would kick, hit, and fling her body around. I never knew she could be so strong! She is stronger then me! If we tried to hold her she would scream, 'NO, Let me go!' If she could find anything she could lift she would throw it at you. It was just like she was possessed by a little demon child because this behavior is nothing like Raylee. She really is a happy child. She has a lot of anxiety and fear but it is starting to get better. She will now sleep in her bed (you usually have to lay by her until she falls asleep) and she isn't having the night terrors at the same degree as she did this last week. Jerry said 'There is light at the end of the tunnel.' Yes there is, but has been and still is a really long tunnel. I have never had my patience tested at this level but I know that Raylee will recover and be more like Raylee.
Yesterday Raylee had another ultrasound to check her bladder and kidneys. Last week fluid wasn't draining from her kidneys so her urologist wanted to check on them. They are doing so much better as there is only a little fluid in one kidney but they appear to be functioning and draining well. They taught me how to cycle her bladder. This basically is clamping the tube from her catheder every hour so the bladder can fill with urine and then you unclamp it so it releases. This will help the bladder muscles begin to fill full because when someone is cathed all the time like Raylee is right now, the bladder doesn't get the full feeling which it should. This will help wake up her bladder. Then next week we have a possible additional ultrasound and bladder test which is done through same day surgery because she will be sedated for it. We are hoping Raylle will not need the bladder test but if she isn't able to potty on her own she will. Either Tuesday or Wednesday the catheder will be removed to allow her body the ability to try to go on her own. :(
It definately has been a rough and long week but it was mentally good for my girls to spend time with grandma like they use to, and pychologically good for me to go to work. My co-workers and management have been so great to work with through this. Jerry's have been as well. We are really fortunate because I do know some people that when their child was diagnosed with cancer and they missed a lot of work they were let go. Although I was going to work with as little as 4 hours of sleep a night it really was energizing in a way.
Jorja is really excited and having trouble sleeping as well. Her's is because of the excitement of school starting next week. We met her teacher this last week and explainrf what Jorja has been through this summer and explained if she is really tired one day it is because her sister screamed all night. Her teacher is amazing. She told Jorja if she is ever tired she can go to the office to the sick room and take a nap, or, if she just needs to talk they can just talk. Jorja's class is the gifted class, although she isn't labeled a 'gifted' student she does really well in school. We are so excited for her to be in this class. Each student has their own computer on their desks with a flat screen monitor. It must be part of a pilot program this year. Jorja is trilled about this rare experience and will learn how to operate computers better. I am excited for her to simply be in school, be around kids her own age, and to be a kid!
This road to recovery is going to be a long bitter-sweet ride for everyone. It has been difficult trying to get our lifes back to normal. It is going to take as much energy to change our lifes again as it did to except Raylee's illness. At least we are not going through Chemo anymore---it definately could be worse! I would rather deal with a child suffering through night terrors then Chemo! I would rather deal with taking her for many many follow-ups then staying another night in the hospital. She is such a little trooper! It makes me feel so good inside to know that her recovery, and ability to defeat cancer, is inspiring and making so many people happy!
Saturday, August 13, 2011
Bladder Problems
Friday Raylee had an appointment with urology. Her bladder is not functioning as it should. The appointment was a process and not a simple one; we were at the hospital for 5 hours. The appointment included ultra sounds of Raylee's bladder and kidneys. They showed fluid going into her kidneys which means her bladder isn't emptying on its own. She will need to have a catheder for a few more weeks. We hope her bladder just needs more time to heal. In two more weeks if she still does not have the capacity to potty on her own more ultra sounds will be done and a bladder test to see how much of the bladder functions. If it is not functioning she may need to have a catheder for a very long time if not the rest of her life. I had no idea there are people who have to cath themselves all the time. This is another thing we are learning about. The nurse practician who helped Raylee said some people are in accidents and their bladders are damaged permanently so they cath themselves every 4 hours. Hopefully Raylee's bladder will heal, she has been through enough. We stopped given her a bladder medication she has been on for the last few months. In reading the side effects (which is something I need to get better at) this particular medication may be the cause to Raylee's difficulty in sleeping and why she is easily agitated. These are side effects to this medication. Severe side effects are hallucinations. I feel terrible I didn't look at the side effects for this. Now we can be more understanding towards Raylee as she struggles through the difficult path of recovery. We have a long road ahead of us!
Thursday, August 11, 2011
Oncology Follow-Up/CT Scan & Minor Surgery
On Tuesday Raylee had a follow-up appointment with oncology. These are not quick in-and-out doctor appointments like check ups, they last hours. First she has a CT scan which means she must drink about 24 ounces of contrast. This is a lot for her and any child at once. The last CT scan took Raylee hours to drink the contrast. Having her drink it is stressful as well because it expires in 3 hours so if the CT scan is not finished within 3 hours of drinking the contrast you have to start over. The contrast was a sinch this time! All because of that NG tube going in her nose to her belly. I injected most of it and she drank a cup full. An hour has to go by from when you start drinking the contrast, so this time when it was an hour she had the 24 ounces of contrast inside her. Also having this much fluid at once would normally kill Raylee's bladder and give her agonizing pain but this time around she has the catheder. So these extra tubes were used to her advantage and for a brief moment I was happy they were there. After the CT scan in Medical Imaging we go to the oncology clinic.
The CT Scan came back showing NO signs of abnormal tissues, NO signs of cancer NO signs of abnormal limph noids. This is such a relief. We weren't able to see the actual CT scan and we want to really bad to really believe the tumor is gone. The computer system that sends the CT images from the radiology department to oncology was down but Raylee's oncologist said we could see it another day this week (we have 2 other appointments this week on different days). Every time we have an oncology appointment they take urine samples. This is kinda hard because Raylee is in diapers. We were potty training her prior to her diagnosis but she struggled. When she as diagnosed we decided to wait for potty training and then we understood why Raylee had such a difficult time with it. To collect urine from a child who wears diapers the nurse places cotton balls inside the diaper. This means you have to wait and wait for them to pee enough into stupid cotton balls. This time however since Raylee has a catheder this was quite simple. Anyway I always wondered why they collect urine. It is because Neuroblastoma cells create a chemical that can be traced in the urine. Raylee still had this chemical in hers. It isn't something to be alarmed about-her oncologist said it often takes months for this chemical to leave the body after the cancer is removed. During all her follow-up appointments they will check the urine for this chemical. The oncologist also said it can take at least 3 months from the last Chemotherapy treatment for the bone marrow to be back to normal. Our next step in Raylee's recovery is to have the Broviac removed and an appointment with urology to find out what's going on with Raylee's bladder. I tried to schedule an appointment with urology and they turned me away saying general surgery could take care of her. I explained to them we were referred to them by Raylee's oncologist not her surgeon and they still wouldn't schedule an appointment and the individual became really rude to me on the phone. This was really frustrating but her oncologist took care of it. She called them and chewed them out. She wasn't happy and I don't know what she said to them but she said they will call you with an appointment and if it isn't within two day let me know and I will call them again and chew them out again. I love her oncologist-she doesn't mess around or put up with anything that doesn't go her way! Sure enough urology called with an appointment and this time they were super nice to me. Raylee can have the NG tube removed because she is eating and drinking really well on her own. The nurse came in to remove it and Raylee freaked out! She does not want it out! She screamed and cried and it was decided it would be removed on Wednesday when the Broviac is removed because Raylee will be sedated. One appointment down for this week two more to go.
Surgery.......................
On Wednesday Raylee had the Broviac or central line removed. This is the tube that goes into her chest to her heart. Since she isn't receiving any more Chemo she no longer needs this line. It is a quick minor surgery to remove the line. For a child, it is a surgical procedure because the line goes to the heart it could be life threatening if the patient moves during removal. This meant Raylee was sedated once again. This is the 7th time (and possibly not the last) sedation she has had since 5/24/11. The surgery was quick and perfect because the surgeon who removed the tumor also removed the Broviac. We were happy when told Dr. B was going to be Raylee's surgeon again. We really like him. When Raylee woke from the surgery she had a difficult time coming out of the anesthesia. She was like a demon child who was possessed; screaming, kicking, trying to run away, making loud awful screams, hitting, you name it and she was doing it. One of the hospital staff felt so bad for Raylee she gave Raylee a stuffed animal and Raylee through it at her while screaming at the top of her lungs. Then she wanted the stuffed animal so the lady handed it to her and Raylee hugged it and loved it for about 10 seconds and through it all her again as hard ad she could! It was quite embarrassing but what do you do? My child is tired of nurses, the hospital, medicines, and people in her face trying to make her feel better. She is only 3 and can't express her anger, fear, and anxiety well so now she screams and hits. She is very good at screaming! This was a really bad day and felt like hell. I do not wish for anyone's child to go through what Raylee did today; or for any parents either. I was pretty sure Jerry and I were both going to have a nervous breakdown by the end of the day. We had to force her in her car seat because she didn't want to leave and she screaed all the way home. I am sure if you were in the car next to us you probably could hear her. I decided I need a pair of ear plugs because they are stil ringing. Two appointments down for the week, one more to go.....it feels like this week will never end :(
To make matters worse Raylee isn't sleeping well. She falls asleep around 2 am, moans and groans in her sleep, wakes up crying a lot, and will not sleep in her bed. She would rather sleep on the floor. I feel bad for her and lack the patience needed to cope with all this.....it's either lack of coping or lack of sleep. We kinda think she is having withdrawals from all those damn narcotics she was on for pain....glad we are done with those and that they are long gone. I hated having those meds around.
To make even more matters worse, Jorja almost burnt our kitchen down the other day. She was using the microwave to cook Mac 'n Cheese and forgot to add water. Black smoke went everywhere pouring out of the microwave and she is saying 'mom, mom' in a way that didn't reflect an emergency was taking place nor did she stop the microwave. I was in another room saying 'what?' She says, 'ummmmm I need help with the microwave.' By this time I could smell the smoke and ran into the kitchen and opened the microwave door. Our kitchen still smells of smoke. It is a blessing the noodles did not catch fire, the microwave didn't catch fire, or our house. The noodles were black and almost a dust. The little microwaveable container the Mac 'n Cheese comes in was disintegrated. Jorja can no longer use the microwave by herself and she had a tough lesson on how to call for help :) We do not need to experience our house on fire, especially not now.
The CT Scan came back showing NO signs of abnormal tissues, NO signs of cancer NO signs of abnormal limph noids. This is such a relief. We weren't able to see the actual CT scan and we want to really bad to really believe the tumor is gone. The computer system that sends the CT images from the radiology department to oncology was down but Raylee's oncologist said we could see it another day this week (we have 2 other appointments this week on different days). Every time we have an oncology appointment they take urine samples. This is kinda hard because Raylee is in diapers. We were potty training her prior to her diagnosis but she struggled. When she as diagnosed we decided to wait for potty training and then we understood why Raylee had such a difficult time with it. To collect urine from a child who wears diapers the nurse places cotton balls inside the diaper. This means you have to wait and wait for them to pee enough into stupid cotton balls. This time however since Raylee has a catheder this was quite simple. Anyway I always wondered why they collect urine. It is because Neuroblastoma cells create a chemical that can be traced in the urine. Raylee still had this chemical in hers. It isn't something to be alarmed about-her oncologist said it often takes months for this chemical to leave the body after the cancer is removed. During all her follow-up appointments they will check the urine for this chemical. The oncologist also said it can take at least 3 months from the last Chemotherapy treatment for the bone marrow to be back to normal. Our next step in Raylee's recovery is to have the Broviac removed and an appointment with urology to find out what's going on with Raylee's bladder. I tried to schedule an appointment with urology and they turned me away saying general surgery could take care of her. I explained to them we were referred to them by Raylee's oncologist not her surgeon and they still wouldn't schedule an appointment and the individual became really rude to me on the phone. This was really frustrating but her oncologist took care of it. She called them and chewed them out. She wasn't happy and I don't know what she said to them but she said they will call you with an appointment and if it isn't within two day let me know and I will call them again and chew them out again. I love her oncologist-she doesn't mess around or put up with anything that doesn't go her way! Sure enough urology called with an appointment and this time they were super nice to me. Raylee can have the NG tube removed because she is eating and drinking really well on her own. The nurse came in to remove it and Raylee freaked out! She does not want it out! She screamed and cried and it was decided it would be removed on Wednesday when the Broviac is removed because Raylee will be sedated. One appointment down for this week two more to go.
Surgery.......................
On Wednesday Raylee had the Broviac or central line removed. This is the tube that goes into her chest to her heart. Since she isn't receiving any more Chemo she no longer needs this line. It is a quick minor surgery to remove the line. For a child, it is a surgical procedure because the line goes to the heart it could be life threatening if the patient moves during removal. This meant Raylee was sedated once again. This is the 7th time (and possibly not the last) sedation she has had since 5/24/11. The surgery was quick and perfect because the surgeon who removed the tumor also removed the Broviac. We were happy when told Dr. B was going to be Raylee's surgeon again. We really like him. When Raylee woke from the surgery she had a difficult time coming out of the anesthesia. She was like a demon child who was possessed; screaming, kicking, trying to run away, making loud awful screams, hitting, you name it and she was doing it. One of the hospital staff felt so bad for Raylee she gave Raylee a stuffed animal and Raylee through it at her while screaming at the top of her lungs. Then she wanted the stuffed animal so the lady handed it to her and Raylee hugged it and loved it for about 10 seconds and through it all her again as hard ad she could! It was quite embarrassing but what do you do? My child is tired of nurses, the hospital, medicines, and people in her face trying to make her feel better. She is only 3 and can't express her anger, fear, and anxiety well so now she screams and hits. She is very good at screaming! This was a really bad day and felt like hell. I do not wish for anyone's child to go through what Raylee did today; or for any parents either. I was pretty sure Jerry and I were both going to have a nervous breakdown by the end of the day. We had to force her in her car seat because she didn't want to leave and she screaed all the way home. I am sure if you were in the car next to us you probably could hear her. I decided I need a pair of ear plugs because they are stil ringing. Two appointments down for the week, one more to go.....it feels like this week will never end :(
To make matters worse Raylee isn't sleeping well. She falls asleep around 2 am, moans and groans in her sleep, wakes up crying a lot, and will not sleep in her bed. She would rather sleep on the floor. I feel bad for her and lack the patience needed to cope with all this.....it's either lack of coping or lack of sleep. We kinda think she is having withdrawals from all those damn narcotics she was on for pain....glad we are done with those and that they are long gone. I hated having those meds around.
To make even more matters worse, Jorja almost burnt our kitchen down the other day. She was using the microwave to cook Mac 'n Cheese and forgot to add water. Black smoke went everywhere pouring out of the microwave and she is saying 'mom, mom' in a way that didn't reflect an emergency was taking place nor did she stop the microwave. I was in another room saying 'what?' She says, 'ummmmm I need help with the microwave.' By this time I could smell the smoke and ran into the kitchen and opened the microwave door. Our kitchen still smells of smoke. It is a blessing the noodles did not catch fire, the microwave didn't catch fire, or our house. The noodles were black and almost a dust. The little microwaveable container the Mac 'n Cheese comes in was disintegrated. Jorja can no longer use the microwave by herself and she had a tough lesson on how to call for help :) We do not need to experience our house on fire, especially not now.
Saturday, August 6, 2011
Raylee's Home
Great news! Yesterday afternoon Raylee was discharged from the hospital. We didn't think the surgery team was going to let her leave. Raylee's surgeon went on vacation days ago and gave us his personal cell number and told us to call or text him if we had any questions or concerns. We almost called him because it seemed like every morning this surgery team had a different reason why Raylee wasn't ready to come home. However they finally discharged her so we didn't need to call him.
Raylee came home with the NG tube and feeding. She is connected to it 24 hours a day. One of the home health nurses came and showed me how to operate the pump and change the tubing and food bag. It hangs on an IV pole in our home inside a little backpack designed for it. We can also go anywhere since it fits snug in the backpack. It is actually really easy to do. It is another thing I never thought I would ever need to worry about let alone know how to do. Raylee has the catheder still and will have it at least until next week.
We have more great news! Yesterday morning a board of oncologists had a meeting discussing Raylee's treatment and they recommend NO MORE CHEMO! We are so happy about this! They recommend extensive monitoring which means CT scans ever 3 months and probably blood work. Our first follow-up CT scan and clinic (oncology) appointments are next week. This also means Raylee's central line will be removed. This must be removed by a surgical team. The central line was left in for a few more days until this scheduled CT scan is completed so Raylee doesn't get an IV to inject the dye, it will save her from getting poked. Also we will have an appointment with the urologist who will run some tests on Raylee's bladder to ensure there's no chronic damage from the tumor.
Follow-up appointments will become part of Raylee's life and ours. I feel like I will anxiously.wait for them because I will always fear the cancer will return; especially if she gets a belly ache I will be scared it's back. I want to see the CT scan next week to really believe that it is gone. The last 3 months feel like 12 months. It is amazing how you lose track of time.
I am so proud of Raylee for being a fighter and having her strong will. She is a trooper, a little cancer fighting soldier. My heart just aches for all the other little troopers who are going through this, especially the ones who will leave their families and friends to fulfill a purpose in Heaven. What sweet angels they are. I never thought this day would ever come. It is a miracle we are done with Chemo because normally children with stage 3 Neuroblastoma receive 8 rounds, Raylee had 2. Also some children in this intermediate stage need 2 rounds of post surgery Chemo. I was scared Raylee would receive more. The grace of God is with us and His will was that Raylee would survive this with a quick treatment plan--well quick compared to most treatments, it didn't feel quick to us. Through Jesus Christ this was possible and I don't know how to thank Heavenly Father for allowing His beloved son to carry Raylee through this, because we know He did. I don't know how to thank Him for all of you for being our advocates and being there for us, or for all the thousands and thousands of prayers that were for Raylee and my family. The only way I know how to show my thanks is to allow this ongoing experience to change me for the better. There were times I was mad at God for allowing my child to be this ill and the only way to make her better was to posion her and have surgery. However, I know in all things there is a purpose and Raylee must have been extremely valiant in the pre-existance to be able to handle such an illness as a child. The anger I felt is normal and probably healthy in some way, it may show itself at times as I still have a lot of growing and learning to do from this experience. I want you to know however, that I never did stop relying on Him no matter how bad some days were, and I always knew that His will would be done regardless if it was what I wanted. One thing I know, I couldn't have ever gone through this alone and my family couldn't have either; my strength and faith isn't strong enough. Because Raylee is so little I often think this is more of a learning experience for Jerry and I than for Raylee. This great news hasn't sunk in all the way, I am sure once Raylee doesn't have all of these tubes hooked to her (she has 3) it will feel more real. Also once I see the tumor free CT scan, I can celebrate and my heart will be at ease. She has at least 2 more months to go before her immune system is considered normal. So once it's normal we need to have a huge celebration! :)
Raylee came home with the NG tube and feeding. She is connected to it 24 hours a day. One of the home health nurses came and showed me how to operate the pump and change the tubing and food bag. It hangs on an IV pole in our home inside a little backpack designed for it. We can also go anywhere since it fits snug in the backpack. It is actually really easy to do. It is another thing I never thought I would ever need to worry about let alone know how to do. Raylee has the catheder still and will have it at least until next week.
We have more great news! Yesterday morning a board of oncologists had a meeting discussing Raylee's treatment and they recommend NO MORE CHEMO! We are so happy about this! They recommend extensive monitoring which means CT scans ever 3 months and probably blood work. Our first follow-up CT scan and clinic (oncology) appointments are next week. This also means Raylee's central line will be removed. This must be removed by a surgical team. The central line was left in for a few more days until this scheduled CT scan is completed so Raylee doesn't get an IV to inject the dye, it will save her from getting poked. Also we will have an appointment with the urologist who will run some tests on Raylee's bladder to ensure there's no chronic damage from the tumor.
Follow-up appointments will become part of Raylee's life and ours. I feel like I will anxiously.wait for them because I will always fear the cancer will return; especially if she gets a belly ache I will be scared it's back. I want to see the CT scan next week to really believe that it is gone. The last 3 months feel like 12 months. It is amazing how you lose track of time.
I am so proud of Raylee for being a fighter and having her strong will. She is a trooper, a little cancer fighting soldier. My heart just aches for all the other little troopers who are going through this, especially the ones who will leave their families and friends to fulfill a purpose in Heaven. What sweet angels they are. I never thought this day would ever come. It is a miracle we are done with Chemo because normally children with stage 3 Neuroblastoma receive 8 rounds, Raylee had 2. Also some children in this intermediate stage need 2 rounds of post surgery Chemo. I was scared Raylee would receive more. The grace of God is with us and His will was that Raylee would survive this with a quick treatment plan--well quick compared to most treatments, it didn't feel quick to us. Through Jesus Christ this was possible and I don't know how to thank Heavenly Father for allowing His beloved son to carry Raylee through this, because we know He did. I don't know how to thank Him for all of you for being our advocates and being there for us, or for all the thousands and thousands of prayers that were for Raylee and my family. The only way I know how to show my thanks is to allow this ongoing experience to change me for the better. There were times I was mad at God for allowing my child to be this ill and the only way to make her better was to posion her and have surgery. However, I know in all things there is a purpose and Raylee must have been extremely valiant in the pre-existance to be able to handle such an illness as a child. The anger I felt is normal and probably healthy in some way, it may show itself at times as I still have a lot of growing and learning to do from this experience. I want you to know however, that I never did stop relying on Him no matter how bad some days were, and I always knew that His will would be done regardless if it was what I wanted. One thing I know, I couldn't have ever gone through this alone and my family couldn't have either; my strength and faith isn't strong enough. Because Raylee is so little I often think this is more of a learning experience for Jerry and I than for Raylee. This great news hasn't sunk in all the way, I am sure once Raylee doesn't have all of these tubes hooked to her (she has 3) it will feel more real. Also once I see the tumor free CT scan, I can celebrate and my heart will be at ease. She has at least 2 more months to go before her immune system is considered normal. So once it's normal we need to have a huge celebration! :)
Thursday, August 4, 2011
A Brighter Day :)
Wow!! Compared to the last few days Raylee is a completely different child, she still isn't herself but she is a lot happier than she has been. The feeding tube has helped so much! She is more mobile and doesn't have as much pain as before. She also played with cars and Legos with her sister on a blanket on her room floor. She ate more today than she has in a long time. We took her to the cafeteria and let her pick what she wanted. She picked a banana, grilled cheese sandwhich, a Coke, and Cheetos. We are hoping she is released tomorrow. I am just happy she finally smiled!
Raylee's oncologist saw Raylee in the hallway today and said tomorrow the Board (a board of oncologists) are meeting to discuss the next step in Raylee's treatment. So we should have some news soon---------we are praying and crossing our fingers for NO MORE CHEMO!!!
Raylee's oncologist saw Raylee in the hallway today and said tomorrow the Board (a board of oncologists) are meeting to discuss the next step in Raylee's treatment. So we should have some news soon---------we are praying and crossing our fingers for NO MORE CHEMO!!!
Wednesday, August 3, 2011
Post Surgery Blues--Extended Stay in the Hospital :(
Raylee is really was and stopped eating and drinking completely. Yesterday we struggled with getting her to eat and it got worse and worse. We had thought she would be released on Monday because everything was going better than expected but that quickly changed. Yesterday morning she was fine ate Fruit Loops for breakfast and chocolate pudding, and even painted a cape with the local police department who had several officers and dispatchers there to paint pillow cases or capes with the patients. Then in the afternoon Raylee wouldn't eat or drink and was really angry and depressed. She eats like a bird normally but this was worse. She disliked all the medical staff telling them to leave her alone as she pushed them away and wouldn't look at anyone including me.
This morning she hid herself in her blanket cried when I opened the shades on the window and didn't want to do anything. When the nurses or I mentioned food or drinks she screamed 'no' and cried. This was really frustrating because the only thing she needs to do to go home is to eat and drink and she is refusing to do this. I felt like it was my fault because perhaps I was pressuring her too much or failed in some way because she seems mad at the world. She loves Lunchables and has fun eating them. Jerry stocked the patient fridge that's in the nurses station with Lunchables and Capri Suns because the hospital does not carry these items. Raylee didn't want anything to do with them which isn't like her. I have never seen her this way. I feel bad for trying to get her to eat because now that I think about it, I am sure her stomach is hurting especially with all pain meds, antibiotics, and bladder relaxing meds she is given....she is also on a laxative....poor baby girl. The last thing I want to think about when I don't feel good is food. The surgical team visited Raylee this morning and said she would be in the hospital at least a few more days because she isn't improving in eating and drinking. They come in the room around 6:30 to 7:00 am and it is difficult to grasp anything they say that early especially when your not getting more than 4 hours of sleep a night, and those 4 hours are not consecutive. At noon the surgeon filling in for Raylee's surgeon came to talk to me about giving her a NG tube or feeding tube for nasogastric feeding. He said she isn't getting the nutrients her body needs to heal and to wake up her tummy and intestines. I just cried. I felt so bad for her. The nurse had the oncology social worker who works with my family come and talk to me. She said sometimes when children are in he hospital they feel like they lost control of so many different things that they stop eating since it is one thing they can control. She said the feeding tubes take children time to get use to but it would help her get over this stumbling block in her recovery.
Raylee had to receive a medication prior to the placement of the feeding tube. This medication was a type of setative; it didn't put her to sleep but made it so she wouldn't remember the placement. They insert the tube up through the nose and down the throat to the stomach. Raylee screamed 'no' and cried during the placement and I had to hold her down. Her heartrate and oxygen levels were monitored closely for 1 hour to ensure there were no side effects from the setative or problems with the feeding tube. Once Raylee calmed down they began pumping the 'food' into her tummy. The food is basically an IV bag full of Ensure. Raylee fell asleep and the nurse told me I also needed to go get something to eat because I hadn't left the room all day. She basically lectured me on how I need to care for myself and eat too. So she said she would watch Raylee, however minutes after I left the room Raylee pulled the tube out of her nose. I shouldn't have left. A few hours later 3 nurses put it back in and held her down. It was a really bad day full of anger, frustration, and giving up on trying to convince Raylee to eat. It is possible we could go home with the feeding tube and feed Raylee through it. She can eat and drink through her mouth with the tube still inserted. Raylee's oncologist is convinced if Raylee were home, she would be comfortable and eat on her own and if she were her patient right now she would send her home, but she isn't her patient right now---she is surgery's patient. Anyway the postives things about having a feeding tube (we have to look at the good things in this to keep us going)are, Raylee is getting nutrients that her little body desperately needs. Like one of the nurses said she is probably a little malnutritioned. Honestly Raylee hasn't been able to eat since last Tuesday prior to surgery which was over a week ago. Another positive which we are thrilled about is all the oral medications Raylee is on, which is about 4 of them, can be inserted through the feeding tube and Raylee has no idea she is getting medications. This will give her a few days break without the fight and struggle of getting her to take oral medicatins. Especially since prior to giving the pain medicine she needs to eat something so her tummy isn't upset. She also gets a break from her parents and the medical staff trying to convince her to eat or drink something. Eating and drinking are just simple things, especially when that is the only thing from keeping us from going home right now; however for Raylee, eating and drinking seem to be extremely difficult and the last thing she wants to do.
This morning she hid herself in her blanket cried when I opened the shades on the window and didn't want to do anything. When the nurses or I mentioned food or drinks she screamed 'no' and cried. This was really frustrating because the only thing she needs to do to go home is to eat and drink and she is refusing to do this. I felt like it was my fault because perhaps I was pressuring her too much or failed in some way because she seems mad at the world. She loves Lunchables and has fun eating them. Jerry stocked the patient fridge that's in the nurses station with Lunchables and Capri Suns because the hospital does not carry these items. Raylee didn't want anything to do with them which isn't like her. I have never seen her this way. I feel bad for trying to get her to eat because now that I think about it, I am sure her stomach is hurting especially with all pain meds, antibiotics, and bladder relaxing meds she is given....she is also on a laxative....poor baby girl. The last thing I want to think about when I don't feel good is food. The surgical team visited Raylee this morning and said she would be in the hospital at least a few more days because she isn't improving in eating and drinking. They come in the room around 6:30 to 7:00 am and it is difficult to grasp anything they say that early especially when your not getting more than 4 hours of sleep a night, and those 4 hours are not consecutive. At noon the surgeon filling in for Raylee's surgeon came to talk to me about giving her a NG tube or feeding tube for nasogastric feeding. He said she isn't getting the nutrients her body needs to heal and to wake up her tummy and intestines. I just cried. I felt so bad for her. The nurse had the oncology social worker who works with my family come and talk to me. She said sometimes when children are in he hospital they feel like they lost control of so many different things that they stop eating since it is one thing they can control. She said the feeding tubes take children time to get use to but it would help her get over this stumbling block in her recovery.
Raylee had to receive a medication prior to the placement of the feeding tube. This medication was a type of setative; it didn't put her to sleep but made it so she wouldn't remember the placement. They insert the tube up through the nose and down the throat to the stomach. Raylee screamed 'no' and cried during the placement and I had to hold her down. Her heartrate and oxygen levels were monitored closely for 1 hour to ensure there were no side effects from the setative or problems with the feeding tube. Once Raylee calmed down they began pumping the 'food' into her tummy. The food is basically an IV bag full of Ensure. Raylee fell asleep and the nurse told me I also needed to go get something to eat because I hadn't left the room all day. She basically lectured me on how I need to care for myself and eat too. So she said she would watch Raylee, however minutes after I left the room Raylee pulled the tube out of her nose. I shouldn't have left. A few hours later 3 nurses put it back in and held her down. It was a really bad day full of anger, frustration, and giving up on trying to convince Raylee to eat. It is possible we could go home with the feeding tube and feed Raylee through it. She can eat and drink through her mouth with the tube still inserted. Raylee's oncologist is convinced if Raylee were home, she would be comfortable and eat on her own and if she were her patient right now she would send her home, but she isn't her patient right now---she is surgery's patient. Anyway the postives things about having a feeding tube (we have to look at the good things in this to keep us going)are, Raylee is getting nutrients that her little body desperately needs. Like one of the nurses said she is probably a little malnutritioned. Honestly Raylee hasn't been able to eat since last Tuesday prior to surgery which was over a week ago. Another positive which we are thrilled about is all the oral medications Raylee is on, which is about 4 of them, can be inserted through the feeding tube and Raylee has no idea she is getting medications. This will give her a few days break without the fight and struggle of getting her to take oral medicatins. Especially since prior to giving the pain medicine she needs to eat something so her tummy isn't upset. She also gets a break from her parents and the medical staff trying to convince her to eat or drink something. Eating and drinking are just simple things, especially when that is the only thing from keeping us from going home right now; however for Raylee, eating and drinking seem to be extremely difficult and the last thing she wants to do.
Monday, August 1, 2011
Raylee--Not Feeling Well
Early this morning the surgical team came in and said from a surgical standpoint Raylee is doing well. They felt her tummy and left...then Raylee started throwing up again right after they closed her door. The techs came in and cleaned her and her bed up. I am not sure why she is vomiting. The charge nurse said the pain med she is on, Oxycodone, can cause nausea especially since her tummy was empty all night. She had just had Oxycodone before she threw up. They were able to give her a dose of Zofran.....which is her Chemo antinausea med....feels like we are going through a Chemo treatment this morning :( Raylee didn't have the best night. They had to flush her catheder because it wasn't working properly and hook her fluids up again. We are also back to the Morphine. I was hoping she might be able to go home today but now I don't think that is possible.
Raylee is starting to lose her eyelashes and eyebrows. It's amazing how these features really bring out a persons face and personality. She just looks different with them thinning. She is still super cute! The nurses just love her especially when they have to do something like check her blood pressure and she says 'thank you' after they are finished. Everyone tells her she is cute....her oncologist calls her 'Gourgeous.' I hope it makes Raylee feel good.
Raylee is starting to lose her eyelashes and eyebrows. It's amazing how these features really bring out a persons face and personality. She just looks different with them thinning. She is still super cute! The nurses just love her especially when they have to do something like check her blood pressure and she says 'thank you' after they are finished. Everyone tells her she is cute....her oncologist calls her 'Gourgeous.' I hope it makes Raylee feel good.
SuperSibs!--Jorja
Jorja is a SuperSibs (Super Important Brother or Sister!). She is part of a national support group for children who have a sibling with cancer. Check out this program it is amazing! www.supersibs.org
The following information was taken from the SuperSibs web site:
"Ensuring that siblings of children with cancer are honored, supported and recognized so they may face the future with strength, courage and hope."
"When a child is diagnosed with cancer, everyone in the family needs healing, including the siblings. SuperSibs! is a national nonprofit organization ensuring that children whose brothers and sisters have cancer are supported, honored and recognized to help them face the future with strength, courage and hope."
We are excited for Jorja to part of this program. She will receive fun things in the mail from them. The hospital also supports 2 annual events for SuperSibs. We are excited to find out what they are! This has not been the best summer for Jorja. She often has extra chores and is burdened with one or both of her parents always taking care of Raylee, which means often at the hospital. She often feels jealous, lonely, and forgotten. Jorja is an amazing child...and we are trying so hard to make sure she can be a child and just play and be herself! She has always been protective of her little sister but she is now more protective then ever. I think she will always be this way for the rest of their lives. On nights when I am home with Jorja it is very difficult not to have both of my children with me. I sometimes can hear Raylee say "mommy" in another room. I know it is just my mind and heart playing tricks on me but I miss her and Jerry when they are at the hospital. My home is not complete or the same without them there. And when I am at the hospital with Raylee, part of me is away at home with Jerry and Jorja as it is an uneasy feeling being away from home.
Next summer we are definately making up for our lack of FUN!!!
The following information was taken from the SuperSibs web site:
"Ensuring that siblings of children with cancer are honored, supported and recognized so they may face the future with strength, courage and hope."
"When a child is diagnosed with cancer, everyone in the family needs healing, including the siblings. SuperSibs! is a national nonprofit organization ensuring that children whose brothers and sisters have cancer are supported, honored and recognized to help them face the future with strength, courage and hope."
We are excited for Jorja to part of this program. She will receive fun things in the mail from them. The hospital also supports 2 annual events for SuperSibs. We are excited to find out what they are! This has not been the best summer for Jorja. She often has extra chores and is burdened with one or both of her parents always taking care of Raylee, which means often at the hospital. She often feels jealous, lonely, and forgotten. Jorja is an amazing child...and we are trying so hard to make sure she can be a child and just play and be herself! She has always been protective of her little sister but she is now more protective then ever. I think she will always be this way for the rest of their lives. On nights when I am home with Jorja it is very difficult not to have both of my children with me. I sometimes can hear Raylee say "mommy" in another room. I know it is just my mind and heart playing tricks on me but I miss her and Jerry when they are at the hospital. My home is not complete or the same without them there. And when I am at the hospital with Raylee, part of me is away at home with Jerry and Jorja as it is an uneasy feeling being away from home.
Next summer we are definately making up for our lack of FUN!!!
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