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.
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9 comments:
we love you, and will never stop praying. i think my boys think that praying for josh is what everyone does when they say prayers!
It is so overwhelming the first time you go to the oncology clinic. I remember our first time and not wanting to be there at all. You will find, though, that is is a wonderful place. You will meet kids and families that you can relate to and they will become your friends for life. Usually that place is full of smiles and fun, so it must have been a slow day up there! I recommend going to Candlelighters - its the support group at Children's for families with kids with cancer. All the kids go too and it's a lot of fun for them and big help for mom and dad. It helps to know you are not alone. We have a book that is still Jake's favorite that is called "Chemo Crusader". They have copies of it up in clinic and it helps explain cancer and treatment so well. Before Jake started chemo and radiation, we just told him about staying the hospital and what was going to happen like him losing his hair. We did not go on and on about how sick he might get and I am so glad we didn't. Although he did get sick here and there from treatment, he did really well and I am glad we did not have him in the mindset that he would be sicker than a dog, because overall he wasn't. Every kid is different. One thing you have to remember is that when they talk about side effects, they are talking about "possibilities". You don't know if any of those possibilities will happen. Jake was supposed to lose his hearing in the ear that was radiated, but he hasn't. He still has perfect hearing in that ear and not one learning disability to speak of. So you never know and you just have to take one day at a time. Somehow all this horrible stuff they go through becomes routine and normal and the kids really don't give the bad stuff that goes with it the time of day. Keep your attitude light and he will too. Kids are amazing how they get through it all. Please don't hesitate to e-mail or call me if you have questions or concerns. Hang in there. I know what you are feeling right now and it is so scary. You guys will get through this and you will have mostly good days in all of it. Ask June or Christy or any of the nurses about Candlelighters and they will fill you in on when we meet next. Many prayers that the cancer has not spread and that Josh continues to recover so well from his surgery!
Kellie Beresh - Mom to Jake - 4 year Ewing's Sarcoma of the skull survivor and Wheeler 5th grader.
scbkab@cox.net
Ruth,thanks you for always taking to time to update us on Josh. We think and talk about Josh everyday. Garrett always prays that "Josh's Dr. will be nice to him." My heart aches for you. A mothers feelings are so tender for her children, particularly those first born boys. We love you all and think and pray for the multiple times in a day.
Tamee,Keith,Garrett,KendallandTaryn
Take the advice of Kellie Beresh. This is a time to reach out for help. These support groups are experienced and can offer lots of help. And keep in mind, Drs will tell you the worst case scenario. Like Kellie said each child is different. Our prayers will not stop, and I will be there if you need me. We love you all.
Susan & Richard
We will never tire of praying for Josh, or you and Gordon and the other children. If you want us to pray for something specifically just tell us.
My heart aches for you. It is just as hard for a parent to watch their child be sick as it is for the child to go through it. We love you. We pray constantly for you all.
Ruth and family you all are in our prayers tho we only met a week ago at Childrens Hospital, you are in our hearts and prayers May the Lord lay his healing hand on you all and keep you by his loving side. Josh take your picture of you and your mom I took of you at the hospital with you and hold it close to you and you will know I am thinking of you and praying for you daily!
May God Bless You all!
Debbie Bellar
& Family
Our prayers are with you and Josh. We continue to fast for you as well. I wish we could be there to give you a hug and send our sincerest love
Mark and Emily
You don't know me, but I am a good friend of Aubrey's and she has told me about your situation. I want you and your family to know that I am praying for you and your beautiful little boy, Josh. I know that God answers prayers and I hope that will give you comfort.
Shauna gave us your blog address so that we could stay updated on Josh's cancer. Josh is constantly in our thoughts and prayers at this time. He left a deep impression on both of us in Arizona. Jesse will never forget his strong testimony of the gospel.
Jesse & Tiffany Toronto
torontofam.blogspot.com
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