We are down to the nitty gritty! Josh starts treatment on Monday March 3rd. He will be getting radiation to his entire brain and spine every day, Monday thru Friday. On Thursdays he will get vincristine, a chemo drug. This part of the plan will make his hair fall out and he will be very tired. Also, he could have nausea, vomiting, a sore throat, and have a hard time swallowing or become constipated. He could have severe headaches in the first week, that would put him on steroids. We will just have to see what actually happens. This pattern lasts for 6 weeks and then he gets a 4 week break before we start the next part. They say that most kids sleep for the first 2 weeks after treatment, I mean do nothing but sleep! I will explain the chemo cycles that happen next when we get there but for anyone who just can't wait let me just say he will be hospitalized at least once every cycle.
Now, about Josh. He is doing great! He is healing remarkably well after his surgery, and very upbeat. He loves all the mail he is getting. With not being able to go to school it really makes him feel good to get them. He has even been getting cards from a couple of cats! That has been really fun and he giggles about those. This has definately been the calm before the storm and we have been glad to have the break. We are very blessed that he went into this process healthy, it is making all the difference. I know that we can not escape all the effects of this treatment but hopefully he can do well. We will just have to wait and see and keep praying. Joshua is a strong young man and determined to fight this battle. We were inspired to call him a warrior, it truely fits. We are greatful to have you as troops in this army and I know he leans on your support......Thanks and we will keep you posted! (HAHAHA)
Thursday, February 28, 2008
Sunday, February 24, 2008
The Weaver
When my father passed away years ago I was just about to go on a mission for my church. I entered the missionary training center at christmas time and was very low. I (being the silly girl I am) read about the woman who was healed when she touched the hem of Christ's garment and decided that I would be ok if I could touch an apostle. I know that is a stretch but remember I was mourning my father. I did get to meet Elder Neal A. Maxwell and it made all the difference. I wish I had space to tell the whole story but I will just say it was truely healing to my heart to feel his love as we talked that day. Later I wrote to thank him for the time he spent with me and he wrote back. He included a poem that I refer to when I need to understand hard times. I want to share it with you because we have been struggling with all this information this week and the threads of my life are tangled right now. I am trying to let them go and give them to the master weaver. I know he will pick them up and know just what to do. I take hope in this poem and the promise it gives us. I know that we all have trials we just don't understand and this makes it better for me so hopefully it might help you to.
The Weaver
My life is but a weaving, between my God and me.
I do not choose the colors, he worketh steadily.
Oft times he weaveth sorrow, and I in foolish pride,
forget he sees the upper, and I the underside.
Not till the looms are silent, and the shuttles cease to fly.
Will God unroll the canvas and explain the reasons why,
the dark threads are as needful in the skillful weavers hand,
as the threads of gold and silver in the pattern he has planned.
Auther unknown
The gold threads of my life are my husband and children and family and friends. There is so much light in our lives that it stands to reason that he must weave some dark. I pray that we can see each thread as a gift, some are hard to take but bring things that we need, even if we do not see it now. I know that if he holds the threads it will be beautiful when he is done, I just need to be patient a little longer. I hope this brings light to someone today, we think of you always and are so greatful for your blessings and prayers always.
The Weaver
My life is but a weaving, between my God and me.
I do not choose the colors, he worketh steadily.
Oft times he weaveth sorrow, and I in foolish pride,
forget he sees the upper, and I the underside.
Not till the looms are silent, and the shuttles cease to fly.
Will God unroll the canvas and explain the reasons why,
the dark threads are as needful in the skillful weavers hand,
as the threads of gold and silver in the pattern he has planned.
Auther unknown
The gold threads of my life are my husband and children and family and friends. There is so much light in our lives that it stands to reason that he must weave some dark. I pray that we can see each thread as a gift, some are hard to take but bring things that we need, even if we do not see it now. I know that if he holds the threads it will be beautiful when he is done, I just need to be patient a little longer. I hope this brings light to someone today, we think of you always and are so greatful for your blessings and prayers always.
Thursday, February 21, 2008
News and a Plan
Well I am playing catch up tonight. Josh had surgery yesterday to install a port and do a spinal tap. The surgery went well but Josh had a hard time after and was very sick. He is better now and recovering fine. The port is in the middle of his chest and looks good and the tap came back with good news, no cancer cells found. We were glad to have that news when we met with the oncologist today. I asked her for the grading on the tumor and she told us that all Medullablastomas are automaticly graded a 4. They are tough to deal with and have a harsh protocol for treatment. However, she has also told us that the hystology of this tumor is favorable, that is important. Apparently the hystology tells you how aggressive the cells are and Josh's are not overly aggressive. Also, the fact that it has not spread is good news, now we can start treatment. We meet the radiation oncologist on Monday and set up a plan for the next 6 weeks. We have discovered that we no longer have a "doctor", now we have a "team". It is a little overwelming but Josh loves the attention! I am struggling with all the information we are being given. It is more than I can absorb and so much is bad that I get discouraged but then I tell myself that it is all things that can happen but we will have to wait to see what actually does happen. I am glad to have Gordon's Mom here this week, I have been crying on her shoulder as a work through this. We have to mourn the future that may never come and start building a new one for him. He is a wonderful boy and touches everyone around him. The doctors and nurses are very impressed with him and I have to learn to follow his lead. Hopefully there will be no more surgeries for a while and we can just follow the plan and start moving forward. He is struggling to understand why all this is nessesary when he doesn't feel sick. Hopefully we can do the things that will make this as easy as possible for him. Please keep praying for Josh and us, Gordon and I sometimes need more wisdom and understanding than Josh does. We love you all and hope that things are good in your family.
Thursday, February 14, 2008
The Future
We went to the oncology clinic today. Josh had a great time with the toys and games there, he thought it was fun. He doesn't seem to know what is coming and I don't know how to prepare him. I looked into the faces of the children doing treatment. They seem hollow and sad, not one smiled or acknowledged us. On a wall back by the nurses station was a board with the pictures of the hundreds of children who have passed through there. I have never been more sad in my whole life than to see so many children suffering and know that Josh is one of them. Everyone keeps asking what they can do to help, but there is nothing that will fix this.
We do not have an exact date yet but next week he will have surgery to install a port to administer the chemo and a spinal tap to see if the cancer is already spreading. He then gets 2 weeks to get strong and he will start treatment. We will have radiation everyday, Monday thru Friday for 6 full weeks. Once a week during this cycle he gets chemo too. This is the hard part of the treatment. The side affects include what I listing in my last post and more. Deafness or at least hearing loss is a big concern, he will go bald, the treatment will take away his appetite and strength. The doctor says that after the 6 weeks cycle he gets a 2 week break before the next phase. She says that most kids sleep for the whole 2 weeks. After the break he starts heavy chemo. 9 Cycles over time. He will have to stay in the hospital for 1 or 2 nights each round and they run them every 6 weeks.
I worry that you will get sick of me asking for your prayers. It is all that holds us together now. We are so greatful for the people who are sending letters and visiting. Our house is a little crazy but at least it is not too quiet.
On the first day after surgery when Josh couldn't move his head and was so sick he asked Gordon to read to him. He said, "Daddy, read me the Joseph Smith story" For those of you not from our church a long time ago a young boy of 14 asked God which church to join, which was right. That boy had so much faith that God the Father and Jesus Christ appeared to him and told him to join none of them. He became the prophet that restored the church in our day and Joshua has a special love for him. In the hardest of times our sweet boy reaches out to Jesus and the prophets for strength, he seems to know what is important and has as much faith as that boy of 14. It is my prayer that we can have the faith and strength that Joshua shows. I pray that as each of you encounters trials that you will find that faith too. Please know that we care about you and pray for your families to be blessed as you have blessed ours.
We do not have an exact date yet but next week he will have surgery to install a port to administer the chemo and a spinal tap to see if the cancer is already spreading. He then gets 2 weeks to get strong and he will start treatment. We will have radiation everyday, Monday thru Friday for 6 full weeks. Once a week during this cycle he gets chemo too. This is the hard part of the treatment. The side affects include what I listing in my last post and more. Deafness or at least hearing loss is a big concern, he will go bald, the treatment will take away his appetite and strength. The doctor says that after the 6 weeks cycle he gets a 2 week break before the next phase. She says that most kids sleep for the whole 2 weeks. After the break he starts heavy chemo. 9 Cycles over time. He will have to stay in the hospital for 1 or 2 nights each round and they run them every 6 weeks.
I worry that you will get sick of me asking for your prayers. It is all that holds us together now. We are so greatful for the people who are sending letters and visiting. Our house is a little crazy but at least it is not too quiet.
On the first day after surgery when Josh couldn't move his head and was so sick he asked Gordon to read to him. He said, "Daddy, read me the Joseph Smith story" For those of you not from our church a long time ago a young boy of 14 asked God which church to join, which was right. That boy had so much faith that God the Father and Jesus Christ appeared to him and told him to join none of them. He became the prophet that restored the church in our day and Joshua has a special love for him. In the hardest of times our sweet boy reaches out to Jesus and the prophets for strength, he seems to know what is important and has as much faith as that boy of 14. It is my prayer that we can have the faith and strength that Joshua shows. I pray that as each of you encounters trials that you will find that faith too. Please know that we care about you and pray for your families to be blessed as you have blessed ours.
Saturday, February 9, 2008
Chances
Ok, it is back to me! Thank you to my wonderful sister-in-laws for the great job of posting till I could get to a computer.
I have very sad news today. We are SO greatful for all the miracles that have and are happening. Josh is recovering from the surgery so much faster than the doctors thought was possible. With that said, we received the pathology last night. Josh has a MEDULLABLASTOMA tumor. Even though I knew this was coming I somehow thought that they would tell me it was benign. I am heartbroken to tell you that this is an aggressive tumor that spreads to the spinal cord quickly. They will do another MRI of his spine tomorrow to see if tumors have begun to form. They will also do a spinal tap to look for cancer cells in the fluid. That is done 2 weeks post-op. If it has not spread we have an 80% chance. To make that happen he will have radiation AND chemotherapy for about 9 months to a year. They will radiate the entire brain and spine for 5 weeks every day. They will also do chemo once a week. He then gets a 2 week break and they start a full protocal of chemo for the next 9 months. He will be bald, his growth could be affected, and he could have substantial memory loss from the treatment. There may be more side affects but we will have an oncology appointment just to talk about that later.
I am sorry to just lay this out but we want everyone to be clear about where we are. I am not losing hope, 80% is a good number. But Josh will be asked to endure more than I would ever put on a child. Please, we need you. Keep praying, I am convinced that your prayers made all the difference in this surgery. Look how fast he is recovering! Also, I can see that he has begun to feel isolated and sad. Call him if you have time. Write him letters about your families if you are far away. Don't talk about the cancer- just about him and you and the normal things going on.
I would give my life to take this from him but I can not. My child is no longer just mine, he is becoming all of ours as we love him and pray for him and care for him. Gordon and I love him but he needs more than just us now. I know that Heavenly Father loves Josh, and Jesus Christ stands at his side. Thank you for standing beside us too. Thank you for loving him like we do. Mostly, thank you for making us strong enough to walk down this path we have been placed on.
PS. We will get out of the hospital tomorrow or Monday at the latest. We are just waiting on that MRI.
I have very sad news today. We are SO greatful for all the miracles that have and are happening. Josh is recovering from the surgery so much faster than the doctors thought was possible. With that said, we received the pathology last night. Josh has a MEDULLABLASTOMA tumor. Even though I knew this was coming I somehow thought that they would tell me it was benign. I am heartbroken to tell you that this is an aggressive tumor that spreads to the spinal cord quickly. They will do another MRI of his spine tomorrow to see if tumors have begun to form. They will also do a spinal tap to look for cancer cells in the fluid. That is done 2 weeks post-op. If it has not spread we have an 80% chance. To make that happen he will have radiation AND chemotherapy for about 9 months to a year. They will radiate the entire brain and spine for 5 weeks every day. They will also do chemo once a week. He then gets a 2 week break and they start a full protocal of chemo for the next 9 months. He will be bald, his growth could be affected, and he could have substantial memory loss from the treatment. There may be more side affects but we will have an oncology appointment just to talk about that later.
I am sorry to just lay this out but we want everyone to be clear about where we are. I am not losing hope, 80% is a good number. But Josh will be asked to endure more than I would ever put on a child. Please, we need you. Keep praying, I am convinced that your prayers made all the difference in this surgery. Look how fast he is recovering! Also, I can see that he has begun to feel isolated and sad. Call him if you have time. Write him letters about your families if you are far away. Don't talk about the cancer- just about him and you and the normal things going on.
I would give my life to take this from him but I can not. My child is no longer just mine, he is becoming all of ours as we love him and pray for him and care for him. Gordon and I love him but he needs more than just us now. I know that Heavenly Father loves Josh, and Jesus Christ stands at his side. Thank you for standing beside us too. Thank you for loving him like we do. Mostly, thank you for making us strong enough to walk down this path we have been placed on.
PS. We will get out of the hospital tomorrow or Monday at the latest. We are just waiting on that MRI.
Thursday, February 7, 2008
Let's Decorate Josh's Room
The doctors are doing an MRI today and then hopefully Josh will be moved out of ICU into his own room. He is having a hard time sleeping at night and gets frustrated that he can't sit up. The new floor will be cheerier and staff can come play games with him, so this will be a good move.
Several people have inquired again as to what they can do. It would be helpful for Josh to start recieving mail that he can paste around his room. Any drawing, pictures, letters would be so appreciated. Please send any mail to the home address and it will get taken to the hospital.
The family again thanks everyone for your continued concern and support.
Several people have inquired again as to what they can do. It would be helpful for Josh to start recieving mail that he can paste around his room. Any drawing, pictures, letters would be so appreciated. Please send any mail to the home address and it will get taken to the hospital.
The family again thanks everyone for your continued concern and support.
Wednesday, February 6, 2008
Post-op Day 2
Last night was a really long and hard night for Josh. He's very nauseus due to the roughed up nerves and hasn't been able to keep anything down. But things are looking up today. He asked for a popsicle and really enjoyed it!
We are hopeful this is a sign of good things to come and grateful for everyone's support.
We are still in intensive care and will be probably for another day or 2 because the tumor was so large. But the doctors say he is recovering from surgery very well--much better than they had expected.
We still don't know the type of tumor--not till at least Monday.
We love you all. Thank you so much for all of your love and support!
We are hopeful this is a sign of good things to come and grateful for everyone's support.
We are still in intensive care and will be probably for another day or 2 because the tumor was so large. But the doctors say he is recovering from surgery very well--much better than they had expected.
We still don't know the type of tumor--not till at least Monday.
We love you all. Thank you so much for all of your love and support!
Tuesday, February 5, 2008
Miracles DO happen!
Here is an overview of today's surgery:
Surgery went really well.
Josh is in the ICU overnight for observation.
90-95% of tumor gone.
The pathology report will back in a week regarding the type of tumor and further treatment.
Josh is awake and talking, tube is out, off ventilator, he was asking for a popsicle and the doctor finally gave in and gave him one. He insisted on having both "sticks"! (He is feeling no pain and is heavily medicated)
No sign of paralysis on his face.
The doctor said he roughed up the nerves a lot but none were destroyed.
He has a little trouble moving his head because they cut the muscle, but they will work with him.
The next 48 hours are critical as doctors watch for brain swelling, infection and any other complications.
The family is very grateful for all the fasting, praying and thoughts in Joshua's behalf.
Surgery went really well.
Josh is in the ICU overnight for observation.
90-95% of tumor gone.
The pathology report will back in a week regarding the type of tumor and further treatment.
Josh is awake and talking, tube is out, off ventilator, he was asking for a popsicle and the doctor finally gave in and gave him one. He insisted on having both "sticks"! (He is feeling no pain and is heavily medicated)
No sign of paralysis on his face.
The doctor said he roughed up the nerves a lot but none were destroyed.
He has a little trouble moving his head because they cut the muscle, but they will work with him.
The next 48 hours are critical as doctors watch for brain swelling, infection and any other complications.
The family is very grateful for all the fasting, praying and thoughts in Joshua's behalf.
Monday, February 4, 2008
Tomorrow's Miracle
Well, tomorrow is the big day. I want to thank all the people who are praying with us and let you know that we are overwelmed with support. We have people from Maryland, and Florida and Texas all the way to Arizona and Utah and back to New York praying for our special boy tonight and tomorrow. It makes me small to feel know that one child can unite people all around the country. I am humbled to be the parent of this special spirit and know that so many people love him. Please know that we love you and will be forever grateful for your support.
Now on to logistics.......tomorrow we go to the hospital at 10am. Surgery will be at 12:00 and will last 3-6 hours. After surgery we will call my sister Celia who has come to help with the children and she will make a post with whatever information we have. We will have the full information about 1 week after the surgery from the pathology of the tumor. After tomorrow we will be in the ICU for a day or two. Once we are on the floor he can have visitors. This is limited: no one in diapers can come, you must be healthy and can't have been hanging around someone else who is sick. I will make a post each day telling everyone if he is up to visits and will have a number for you to call to make sure we have not been swamped. Luckily the hospital has computers for mom's like me. Please be patient, I have to wait to see what every day brings to know where we are.
I want everyone to know that we feel the hand of a loving Heavenly Father as we approach tomorrow and each day. I know that he is mindful of our struggles and has a plan for Joshua. We are grateful for the chance to be Joshua's parents and we are learning from him and this experience. Tomorrow will bring miracles and blessing and our job is to find and see them.
Now on to logistics.......tomorrow we go to the hospital at 10am. Surgery will be at 12:00 and will last 3-6 hours. After surgery we will call my sister Celia who has come to help with the children and she will make a post with whatever information we have. We will have the full information about 1 week after the surgery from the pathology of the tumor. After tomorrow we will be in the ICU for a day or two. Once we are on the floor he can have visitors. This is limited: no one in diapers can come, you must be healthy and can't have been hanging around someone else who is sick. I will make a post each day telling everyone if he is up to visits and will have a number for you to call to make sure we have not been swamped. Luckily the hospital has computers for mom's like me. Please be patient, I have to wait to see what every day brings to know where we are.
I want everyone to know that we feel the hand of a loving Heavenly Father as we approach tomorrow and each day. I know that he is mindful of our struggles and has a plan for Joshua. We are grateful for the chance to be Joshua's parents and we are learning from him and this experience. Tomorrow will bring miracles and blessing and our job is to find and see them.
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