Isaiah's Bone Marrow Transplant
Isaiah has sickle cell anemia which is a genetic blood disorder. From the age of three, now seventeen, he has had to be admitted to the hospital almost monthly due to pain and other complications from this terrible disease. Isaiah has been attending school at our local children's hospital for seven years because of the amount of time he spends in the hospital. He has never had a regular school year, nor the social opportunities most kids have. He is a senior this year, but for Isaiah high school has been no different than middle school. He is in a classroom that educates elementary through high school students.
All of Isaiah's major organs have been damaged because of the constant sickeling of his blood. He has severe bone deterioration called avascular necrosis, which has caused him to have surgery on both arms and both legs. The doctors say he has the bones of an 80 year old woman who has severe osteoporosis. This causes Isaiah to have severe pain and have to be on a constant regiment of pain medication and have a two day hospital stay every three months for an infusion to help strengthen his bones.
For several years now doctors have performed bone marrow transplants in sickle cell patients and have seen very positive results. We had to make a choice between letting this disease continue to kill him slowly or take a chance with a bone marrow transplant. Isaiah is a fighter and after three years of research, prayer, and multiple hospital admissions Isaiah has decided he wants to take on this fight and have a bone marrow transplant. He wants to have a better quality of life. He wants to be able to attend college and become a pediatric hematology/oncology doctor because he knows he can relate to those children and serve them well.
We are being told by our transplant team that we will be in Minnesota for at least 6 months as long as everything goes well and there are no major complications. This procedure is not one to be taken lightly and we are all nervous, but the opportunity for Isaiah to be able to live a regular life is worth it. The hospital Isaiah will be in is located 4 hours away from our home town of Des Moines, Iowa, which means I will be unable to work. I own my home, have car payments, and my oldest son is a college student. I am a single mother and our sole source of income. I am asking for help so that my bills will be paid as I am with Isaiah during this time and to help with expenses while in Minnesota.
For more information about Isaiah please google Isaiah Newsome sickle cell. You may also click on the links below.
My family And I thank you in advance and we also solicit your prayers.
I listen to a lot of gospel music and really enjoy many of the new artist, but today one of those old time hymns has been stuck in my head.....'Standing on the promises of God'....so of course that's my theme song for today and honestly everyday. Knowing God's promises is crucial because when you are at your lowest points or have lost your joy or feeling lonely or like you want to give up you're able to stand on those promises. Knowing your word increases your faith and gives you what you need to hold on too during troubling times. Knowing your word and what God has promised will allow you to hold on and not give up or give in. Knowing my word is pivotal for me when I pray.....you see when I pray I don't beg God to do things for me or for others, I ask Him and after I ask I remind Him of His promises to me in His word....."God you said....." I learned this from my big brother, my Savior Jesus Christ.....see when He was in the Desert being tempted those 40 days and 40 nights he reminded Satan of what our father said so I do the same.
I don't have any income and I knew that would be the case while in Minnesota, but I know God has promised that He is a provider...(Philippians 4:19:And my God shall supply all your need according to His riches in glory by Christ Jesus.).... I knew a long time ago God would heal Isaiah from sickle cell anemia...(Proverbs 3:8;Then you will have healing for your body and strength for your bones.)....I can go on and on because our God loves us that much that He doesn't hide what He will do if you have faith and you just ask....(John 13:13-14;13 You can ask for anything in my name, and I will do it, so that the Son can bring glory to the Father.14 Yes, ask me for anything in my name, and I will do it!)
Stop relying on what others tell you about God and develop a relationship with Him. Get in your word and learn who He is for yourself. I promise you that when life throws itself at you the impact is not as devastating when you know that He not only has your back, but is always working and it's all for your good and end the end will bring Him glory...(Timothy 4:18;Yes, and the Lord will deliver me from every evil attack and will bring me safely into his heavenly Kingdom. All glory to God forever and ever! Amen.) ....
Today I want to talk about giving thanks and being thankful no matter what you are going through. I know we all have situations that come up in life that tend to take us off our game because we then place all our energy into it. Situations consume our thoughts and actions. Our first thoughts tend to be how can I fix it or what are we going to do. We have to remember that through all of the rough patches to still give thanks because no matter what we are going through The day is filled with many more blessings than hardships. If you have an attitude of gratitude you would probably be amazed what blessings will come to you in the valleys of life....just open your eyes and look around. You woke up this morning......all of us have a little more weight on us than we need so we are eating well.....we have air to breath....water to drink.....someone that loves us. When praise goes up.....blessings come down believe me.
Isaiah has been in pain since last Wednesday and it increased each day. We finally got to the point where the pain mess I had were not working so we called his docs Friday morning and they had us come in. We were in clinic then put into the infusion room so he could get IV meds to see if that would help. Finally late that afternoon he was admitted, but Isaiah did not want to stay. A very close family friend past away and he wanted to be able to attend her celebration of service on Monday. After much debate he, being 18, checked himself out and we went home. Our friends mom called and talked to him reminding him of what Emily would have wanted, and of course that would be to take care of himself and keep pushing and following God's plan, so sat morning he called the doctor and was admitted again. The pain is pretty severe in his lower back making it challenging for him to get comfortable.
This is is an area that he would have pain in during his sickle cell crisis. The doctor said that because of the many years of sickling.... it is still very sensitive to pain and the vascular damage done by the sickling would allow him to still have pain at times. His body is healing, but it will take some time. So today he had an MRI to figure out what's happening since the x-Ray he had Friday didn't show anything.they also ran a lot of blood test today so I will let you all know when I get some definitive answers. So for now here we sit lol.
We we know things will be ok.....this is just another day's journey and I'm going to still rejoice in it. He woke us up this morning, he gave me a mind to think with, He has put earthly angles in my life, He gave me legs to walk on, He gave me life and I'm glad about it. Don't let today's bumps keep you from praise.....it temporary. He is sill God and He sees you.
Until next post.......keep praying, keep praising, become a regular blood donor and get on the organ and bone marrow donor list
love you and appreciate you all
Wow today is Day +175/+131….It has been 34 Days since my last post and for the life of me I don’t know where the time has gone. I know I’ve said it before, but it’s very strange how time can literally move so fast yet seem so slow at the same time. I have been trying to write this post for a month now. I start then get sidetracked….then they cycle starts again. I have a clear vision of what it is I want to say, but have been unable to settle myself enough to write.
I want to start off by saying God is good ALL the time and I am honored that He has been using Isaiah and I in such amazing ways. I will continue to Bless the Lord at all times and say yes to His will and be obedient to what He has for me to do.
I went of Facebook for the first time in a very long time the other day. Scrolling through my news feed I noticed that many of the stats were about struggles that folks are having. I began to pray for God to remove whatever it was that caused the person to write the stat and to Bless them and relieve them of the burden….then God spoke to me and reminded me that the things people are going through is part of the plan and that in our struggles we gain strength and endurance (Roman 5:3). See I instantly jumped to wanting God to remove the problem, but He will bring us to a situation just so we are able to gain the strength, courage, and the wisdom needed to handle the promotion He has for us. He is preparing us to be on the next level. Most people have heard or read Psalm 23 in the Bible. It’s the one that says the Lord is my shepherd. It talks about how God leads you to green pastures and still waters and restores you…then all the sudden it talks about being in the valley of shadow of death and not fearing evil because He is with you.
This journey Isaiah and I have been on didn’t just happen overnight. Over these 15 years He has been preparing us for this BMT experience. Our faith has been strengthened by every trial and tribulation because we have seen God at work. We have been able to praise Him in advance because we trust in His word and promise. Even when we have been in the valley God has still blessed us. One of my favorite Bible stories is in 2 Chronicles about Jehoshaphat. Trouble came he fasted, prayed, and praised God in advance and at that very moment he praised God turned the situation around and he and his people were blessed in the same valley they were confronted with the biggest obstacle they had ever encountered. Stand still ….speak life and remember God has you even when you don’t think He does.
Isaiah has come up against a few challenges in the last month, partially why I haven’t posted, and we have been readjusting meds and things in accordance. We are still working on eating....he is still on the TPN daily to make sure he is getting calories and nutrients and not losing too much weight and muscle. When he feels a craving for anything we go get it. I think this is the only time in his life that he could have 100 candy bars and I would be ok with it. If he takes a few bites of anything we celebrate.
He never does anything by the book, lol, and as always keeps his docs on their toes and once again has astounded them with a situation they have NEVER seen before. He is still sickle cell free as my marrow continues to produce red and white blood cells, but he has started producing his own original T-cells which if not held at bay will attack and kill off my cells. He is 100% me and 100% him…..docs could not believe the data. Only my son lol. They have done several donor studies now with the same info showing up….so we just continue to watch.
His docs have reached out to other centers across the country and a few have seen this crazy phenomenon. We have a contingency plan in place if his cells start to act a fool. I asked the doc if this means we have to stay even longer and she said no. We will be able to watch it from home with his docs. We were so happy and thankful to hear that. She said that we should be able to go home in a month as long as he doesn’t have anything crazy happen or come up. We are optimistic and claiming that he stays in good health…. so now begins preparation for Isaiah’s homecoming. Lots to do in my house to get it ready, but I trust that God will fulfill His promise to me and prepare the place ahead of me. When I pray I do it expecting my Dad to provide…..He Is and He Will.
Stay encouraged friends and family. Remember to love on and pray for one another. Save a life or three by donation blood and if your able become a bone marrow donor….you will change someone’s life.
Until next post….
Go Isaiah go!! If I were strong as you I could lift Mount Rushmore! We are all so proud of you! Give your mom lots of love. Lots of prayers buddy
Woot woot!!!! Go
Stay Strong Buddy. I think of you daily and keep you forever in my prayers.
Day +10 This is the day that the Lord has made ....so I will rejoice and be glad in it.