January 18, 2011
Day 2 of treatment
Today is beginning better than yesterday. The doctors have cut the amount of medecine I get each hour in half and instead of it running for just 10 hours the time has doubled to make sure over a 24 hour period I still get the same amount, this is going much better. It isn't as painful and my tummy doesn't hurt like it did. So far the pain is managed but please pray it stays this way. Pray my blood pressure goes up, my heart rate goes down and my breathing stays good. One more thing...please pray my kidneys stay healthy and my body stops retaining fluids. Thank you for your love and prayers!!
January 17, 2011
PLEASE PRAY!!!!!
This is from Noni's facebook:
Hi everyone - today was really hard for Halie & her mom & dad Please continue to keep them in your prayers. So far this is the hardest treatment for her. She is in a lot of pain & that is hard for us all to deal with. We know God is control, but as humans it is hard to see one we love hurt. Please pray without ceasing for her to continue being strong & for God to help her manage the pain.
A message from Nana as well:
Halie has had a very difficult day. Her pain level has been very high. There has been some problems getting her medication to help ease the pain at the correct level. She is in ICU tonight so they can keep a closer eye on her. Jason and Jenn have had a lot of heartbreak witnessing all of this. Please pray for all of them.
As you can see today wasn't the best for me. I hurt ALL over and the pain medication needs much tweeking. There were some REALLY scary moments for mommy and daddy....pray for us ...pray for protection from side effects, pray for peace ...God's peace to embrace us all. Pray mommy and daddy will get some rest tonight. Jesus...help us!
Hi everyone - today was really hard for Halie & her mom & dad Please continue to keep them in your prayers. So far this is the hardest treatment for her. She is in a lot of pain & that is hard for us all to deal with. We know God is control, but as humans it is hard to see one we love hurt. Please pray without ceasing for her to continue being strong & for God to help her manage the pain.
A message from Nana as well:
Halie has had a very difficult day. Her pain level has been very high. There has been some problems getting her medication to help ease the pain at the correct level. She is in ICU tonight so they can keep a closer eye on her. Jason and Jenn have had a lot of heartbreak witnessing all of this. Please pray for all of them.
As you can see today wasn't the best for me. I hurt ALL over and the pain medication needs much tweeking. There were some REALLY scary moments for mommy and daddy....pray for us ...pray for protection from side effects, pray for peace ...God's peace to embrace us all. Pray mommy and daddy will get some rest tonight. Jesus...help us!
January 16, 2011
I will help thee, saith the Lord.
Isaiah 41:14
I will help thee, saith the Lord.
This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more." "Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'" O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!
"Fear not, I am with thee, oh, be not dismay'd!
I, I am thy God, and will still give thee aid."
God used Spurgeon to ministered to my Mommys heart this morning. She is a little anxious going into Immunotherapy & she really wanted me to share it! God is so faithful to gently remind her that He is our help and as we begin this new phase of treatment He will help us as he always has. He will give us the strength to walk this journey, He will give the doctors wisdom to take care of me and He will supply the peace that surpasses all understanding. HE will take care of me....He always has. It was His hand that has brought me this far and I am safe in his arms. I get admitted for my first ch.14.18 treatment tonight. This round begins at 9 in the morning and will run over 10 hours Mon - Thursday. This drug is a chimeric monoclonal antibody that is designed to attach to specific targets on cancer cells. In neuroblastoma one such target is GD-2. Ch 14.18 was designed to attach to neuroblastoma cells and other cells that have GD-2 present. when ch 14.18 attaches to the neuroblastoma cells, the bodies immune system is stimulated to attack and kill the neuroblastoma cells. This is called immunotherapy. Ch14.18 represents a new kind of cancer therapy because it targets the cancer cells without destroying the nearby healthy cells unlike chemotherapy and radiation. I will also be given GM-CSF which is supposed to increase the anti-cancer effect of monoclonal antibodies like ch.14.18. I will also be given Interleukin - 2 but I won't get it until feb 6th. I will be treated with 6 courses of therapy and each course will last between 24 and 32 days. I will be treated with ch.14.18, GM-CSF, and isotretinoin ( which I will be given at home by Mommy and Daddy) in courses 1,3 & 5. In course 2 and 4 I will be treated with ch.14.18 and Interleukin - 2 "IL-2" In course 6 I will be given Isotretinoin. Whoo --- alot of info.... I will do my best to update you specifically how to pray each time as it's alot of info and the side effects and risk vary depeding on what i am getting. It is going to be a tough couple of months as I do not get a break from treatment. I will be receiving Isotretinion whenever I am at home along with GM-CSF. So, here goes....
Before I go into the prayer request many of you may be asking why we are doing this espcially when you hear the risk when I am cancer free. Well, very small amounts of Neuroblastoma can be present that are too small to be detected by a microscope. These small amounts are called Minimal Residual Disease. Although I have responded AMAZINGLY to treatment (Thank You Jesus) the truth is that High Risk Neuroblastoma has a high relaspe rate and is harder to get rid of if it returns. So Daddy and Mommy have prayerfully considered what is best for me and feel this is the path God has us on. We will take this day to day. That's all we can do. We know that the same God that brought us this far will carry us through this next part of our journey through childhood cancer. Please pray for me this week. Most likely I will be nauseated, have severe pain in my back, abdomen, cramping, arms, legs, head, nerves, headache which will require administrating of pain releiving medicine (which will start one hour before treatment) I could have an allergic reaction which could be life threatning with fever, hives, tongue sweeling, shortness of breath or wheezing, low oxygen levels in the blood, low blood pressure and a rapid heart rate. Loss or change of sensitivity to touch (numbness or tingling) a slight drop or rise in blood pressure... There are many other possible side effects too many to list (The Lord knows each one of them & as Daddy reminded Mommy tonight the same God who carried and protected me through Chemo will carry and protect me now). Pray for wisdom for the doctors and nurses to stay ahead of the pain ( I will be on a morphine pump) to be able to detect early if there are any complications and meet them head on. Pray that my body will tolerate this treatment. It is possible to have to stop the immunotherapy at any point due to potential risk to my overall health. Thanks for your prayers.
I will help thee, saith the Lord.
This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more." "Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'" O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!
"Fear not, I am with thee, oh, be not dismay'd!
I, I am thy God, and will still give thee aid."
God used Spurgeon to ministered to my Mommys heart this morning. She is a little anxious going into Immunotherapy & she really wanted me to share it! God is so faithful to gently remind her that He is our help and as we begin this new phase of treatment He will help us as he always has. He will give us the strength to walk this journey, He will give the doctors wisdom to take care of me and He will supply the peace that surpasses all understanding. HE will take care of me....He always has. It was His hand that has brought me this far and I am safe in his arms. I get admitted for my first ch.14.18 treatment tonight. This round begins at 9 in the morning and will run over 10 hours Mon - Thursday. This drug is a chimeric monoclonal antibody that is designed to attach to specific targets on cancer cells. In neuroblastoma one such target is GD-2. Ch 14.18 was designed to attach to neuroblastoma cells and other cells that have GD-2 present. when ch 14.18 attaches to the neuroblastoma cells, the bodies immune system is stimulated to attack and kill the neuroblastoma cells. This is called immunotherapy. Ch14.18 represents a new kind of cancer therapy because it targets the cancer cells without destroying the nearby healthy cells unlike chemotherapy and radiation. I will also be given GM-CSF which is supposed to increase the anti-cancer effect of monoclonal antibodies like ch.14.18. I will also be given Interleukin - 2 but I won't get it until feb 6th. I will be treated with 6 courses of therapy and each course will last between 24 and 32 days. I will be treated with ch.14.18, GM-CSF, and isotretinoin ( which I will be given at home by Mommy and Daddy) in courses 1,3 & 5. In course 2 and 4 I will be treated with ch.14.18 and Interleukin - 2 "IL-2" In course 6 I will be given Isotretinoin. Whoo --- alot of info.... I will do my best to update you specifically how to pray each time as it's alot of info and the side effects and risk vary depeding on what i am getting. It is going to be a tough couple of months as I do not get a break from treatment. I will be receiving Isotretinion whenever I am at home along with GM-CSF. So, here goes....
Before I go into the prayer request many of you may be asking why we are doing this espcially when you hear the risk when I am cancer free. Well, very small amounts of Neuroblastoma can be present that are too small to be detected by a microscope. These small amounts are called Minimal Residual Disease. Although I have responded AMAZINGLY to treatment (Thank You Jesus) the truth is that High Risk Neuroblastoma has a high relaspe rate and is harder to get rid of if it returns. So Daddy and Mommy have prayerfully considered what is best for me and feel this is the path God has us on. We will take this day to day. That's all we can do. We know that the same God that brought us this far will carry us through this next part of our journey through childhood cancer. Please pray for me this week. Most likely I will be nauseated, have severe pain in my back, abdomen, cramping, arms, legs, head, nerves, headache which will require administrating of pain releiving medicine (which will start one hour before treatment) I could have an allergic reaction which could be life threatning with fever, hives, tongue sweeling, shortness of breath or wheezing, low oxygen levels in the blood, low blood pressure and a rapid heart rate. Loss or change of sensitivity to touch (numbness or tingling) a slight drop or rise in blood pressure... There are many other possible side effects too many to list (The Lord knows each one of them & as Daddy reminded Mommy tonight the same God who carried and protected me through Chemo will carry and protect me now). Pray for wisdom for the doctors and nurses to stay ahead of the pain ( I will be on a morphine pump) to be able to detect early if there are any complications and meet them head on. Pray that my body will tolerate this treatment. It is possible to have to stop the immunotherapy at any point due to potential risk to my overall health. Thanks for your prayers.
January 7, 2011
Rejoice!!!! Rejoice!!!! The Lord God Almighty Reigns!
Well my friends...today is indeed a day to celebrate!! All my tests and scans came back CLEAN!!! This means no evidence of disease in my body! Praise the Lord...He truly knows the plans He has for me and He isn't done with me yet!!! We are going out to dinner to celebrate and back home to watch the Aggies play football..Gig 'em!!! Beat Tigers!!!!!
Thank you, thank you, thank you, first, to God for His power and work in restoring my health, then to all of you who have prayed for me and my family. Our powerful God behind those prayers is awesome!!!!
Not to put a damper on my day ... please continue to pray for mommy and daddy as they have lots of information to consider and decisions to make regarding the next step in my treatment. Lord, work in them in such a mighty way that they know beyond a shadow of doubt the road we will take!
Praise God...Praise Him....Prise Him!!
Thank you, thank you, thank you, first, to God for His power and work in restoring my health, then to all of you who have prayed for me and my family. Our powerful God behind those prayers is awesome!!!!
Not to put a damper on my day ... please continue to pray for mommy and daddy as they have lots of information to consider and decisions to make regarding the next step in my treatment. Lord, work in them in such a mighty way that they know beyond a shadow of doubt the road we will take!
Praise God...Praise Him....Prise Him!!
January 3, 2011
When my heart is overwhelmed lead to the rock that is higher than I.....
Happy New Year to all of our family and friends! Words cannot express the thankfulness We feel for all of the many ways you have ministered to our family this past year. We are thankful for the meals, the endless laundry you have washed and folded, the time spent cleaning our house, the financial gifts that have truly helped ease the medical expenses, the gift cards that have given Jason and I much needed date nights, taking our kids to school and picking them up, the parking tokens, those of you that have spent hours at the hospital helping make the time go faster for Halie as we have waited for endless test, labs and hospital stays. Thank you, for the prayers, the shoulders to cry on the ears that have listened and prayed with and for us. Thank you. You have been the hands and feet of Christ for this weary family. Thank you to those of you who have given so much time and effort to raise money for Neuroblastoma research! (I am excited to take the check to TCH this week Morgan!) I feel quite reflective as I look back over 2010! My emotions have run the gamut. This journey that has taken us from our comfortable life to a roller coaster of emotions that often leave us feeling like we have been ransacked by a tsunami but, it has also taught us great truths about God and I feel I can confidently say with Job "I had heard of you by the hearing of the ear, but now my eye sees you". 2010 was a year of pain and suffering but it was also a year of great triumph. In May our daughter was given a 10-15 percent survival rate after her diagnosis to 6 months later being No evidence of disease. There have never been sweeter words to my ears. So, now after 5 rounds of high dose chemotherapy, a 9 hour surgery, 12 rounds of radiation and a stem cell rescue we begin 2011 at Texas Childrens hospital getting scans that will determine the next path God will carry us through. Today as write this I am sitting in the family waiting room of the Pacu as they take bone marrow from each of my daughters hips to determine if their is any new growth. We are praying that she will be no evidence of disease following her scans and tests this week. I have to confess I am tempted to fear. The seemingly endless what if's and the realities of this disease are lurking in my mind waiting to overtake my thoughts and then I am reminded to look to Christ. My hope, Our hope is in Him. Not the protocal as thankful as we are for it, not the doctors as appreciative as we are for there tireless and often thankless efforts to help our children, not in the ch.14.18 which as terrified as I am of it ( a later blog) is so promising. My hope is in Christ. He alone is my refuge. I know now what it means to hide in the cleft of His rock. I never really understood it before but now I do. He is our shelter in the storm. He is the immovable shelter, the strong arms that hold you up while the storms rage and threaten to knock you down and overwhelm you. He will carry our family through this week. He will give us the strength to get up in the morning and endure 3 more scans, test & injections and do it again the next day... even if my tears have to come along with me.... (thanks mom) Please pray this week. Here are specific request:
Bone Marrow Test (free from Cancer)-- Today
Tuesday -- Echo, Ekg, Bone Scan ( pray that the treatment we have done so far has not damaged her heart, that there has been no new growth in her bones) No evidence of Disease!
Thursday -- MIBG scan and CT Scan ( Pray that there is No evidence of Disease and that the spot in her lung is gone.
Thank you for your faithful prayers.
The Pigott family
Bone Marrow Test (free from Cancer)-- Today
Tuesday -- Echo, Ekg, Bone Scan ( pray that the treatment we have done so far has not damaged her heart, that there has been no new growth in her bones) No evidence of Disease!
Thursday -- MIBG scan and CT Scan ( Pray that there is No evidence of Disease and that the spot in her lung is gone.
Thank you for your faithful prayers.
The Pigott family