Well, I don't think we could have gotten off to a worse start! Josh had a bad experience on the first day and what we thought would be a 15 minute appointment was 2 hours. They wanted to take a bunch of xrays and spooked him and then we had to fight to get it done. I thought it would be a great reward to give him an icee after (he loves them) To my great saddness, he started throwing up about an hour after treatment and it got so bad we had to go to the emergency room. For 5 hours he threw up every fifteen minutes. It was so bad he couldn't breath when he was sick and finally fell asleep exhausted. They gave him medicine but it didn't make much of a difference, just sleep helped. Yesterday we talked to the doctor and she said his brain is swelling and that if he got sick after treatment again he would be on steroids. He seemed fine after treatment yesterday and had a snack when we got home ( a little one). Of course we gave him anti nausea medicine before treatment to help that. However at 6pm he had fallen asleep and we couldn't get him to wake up. He slept till 2 am and then had a sip of water and fell back asleep. This morning he woke up and wanted breakfast right away. This seemed like a good idea cause he wasn't sick yesterday morning but turned out to be a fatal mistake. He got 2 bites down and was sick immediately. We called the doctor and she confirmed that this means he has swelling in his brain. She said if you sleep laying down you get extra fluid in your brain and with the swelling if you eat before you have sat up for a while the combination of fluid and swelling will cause you to be sick. Gordon ran to the pharmacy and picked up the steroids and we have just taken them. He has been sitting up for a while and seems to be keeping the medicine down( fingers crossed) Hopefully the combination of the anti nausea and steroids will get us through this time but it is rough for Josh.
This is hard for me, I just don't know what I am doing. I seem to be doing everything wrong and he is suffering. No one tells you about all these little potholes so you can avoid them. Also, we had hoped that he would tolerate this treatment well but he seems to be having every possible side effect and that is disheartening. Brain swelling, nausea, and he is exhausted in the first week. ( I do know that the tiredness is from the throwing up and lack of food) I keep telling him it will get better and that we can't stop but I feel like I am lieing to him and torturing him everyday. I am sorry this is not more happy and encouraging but this is all I have today. I hope you are all doing better than us and I am still asking for prayers, we sure need them!!!!
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11 comments:
Being positive and hopeful is not lying and hurting Joshua. This is a very hard and painful journey Josh has to go through. You are doing everything you can to help him walk the path that he needs to walk. Heavenly Father has chosen you and Gordon to be with him. You are God's hands. You love him as Heavenly Father loves him and you are trying to help make the journey easier. You want him to have a soft place to land when he falls down. Don't give up. Our prayers are still with you.
You may want to ask your Dr. about a special prescription for antacid in addition to anti nausea. I had to take steroids before for a serious foot injury I had. The steroids made my stomach ill and I couldn't even keep water down for days.Just a thought.
We love you all dearly,
Michael, Nancy, and the boys.
Ruth, you are a Wonderful mother. Your not making mistakes, your learning and growing with your son and family in a situation very few will ever experience. My heart hurt for the pain that your are all going through. We love you and pray for you all always. Endure these tough days becuase I know happier, healthier days will come. And don't worry about being honest in your writings and feeling. We want to know how you're really doing, and noone has any right to judge you. We love you. Please let us know if you can help..
A package for your family in on it's way in the mail...
Write when you get a chance.
Thinking about you..
Michelle and I have been thinking about your family a lot. I only wish we were near by to help out more, and just go play.
I'll keep praying for you, and tell all of the kids we think about them and miss them.
Let us know if we can ever do anything, even from way out here.
Love, Adele and Michelle
adele@bbbsfh.org
mdouglas@emporia.edu
You don't have to be positive about this all the time. It is hard enough going through it without having to worry about keeping up appearances. That's just extra energy and sometimes you won't have any extra. Keep posting anyway if it helps you. Steroids have their own side effects. This all stinks, it really stinks and it breaks a mom's heart and soul. May the Lord hold you in times of need.
Rayette
Ruth, I was talking to Aimee Asay about the treatment and Josh's reaction. She said this is all very normal and to be expected. Radation is the worst, she said. She said you really should get a hold of a cancer support group. She said they are a great resource and can truly understand what you are going through and may be able to give you ideas to help Josh. I know you are overwhelmed and we are praying for you. Keep your head up. Listen to the spirit and you'll get through this.
We love you. Let me know if you need anything.
Unfortunately, all of this is very normal. Next week he could handle all of it with ease, you just never know. This road of childhood cancer is more like a roller coaster than anything else. I guess as mom's of these kids, we just get used to riding the roller coaster and we get better at handling all of it as time goes on. Jake had a hard time with things the first couple of times with radiation, but then it all evened out and he did well through the rest of it. He had to be on steroids here and there throughout his 6 weeks of radiation and in the year he was on chemo. One thing I will tell you too is that there are a lot of different anti-nausea meds. If one does not work, you can ask for another kind. Jake did the best on Zofran, but Ativan and Kitryl (sp?) are others you can try. Hang in there. I know you are so overwhelmed right now. One day at a time and know that it does get easier. I highly recommend you going to the childhood cancer support group up at Children's too - Candlelighter's. They meet again March 13th at Children's. They have a website - www.caringbridge.org/visit/candlelighters where you can see what the group does and the dates we meet. The whole family can come as long they are healthy. The parents meet separate from the kids, and the kids have a ton of fun there. Connecting with other cancer parents is a huge help. You can e-mail me anytime too. We will pray for a good weekend and an easier week of treatment for Josh next week!
Kellie Beresh - Mom to Jake-5 year Ewing's Sarcoma survivor and 5th grader at Wheeler.
www.caringbridge.org/ne/jakieboy
scbkab@cox.net
Ruth, I heard about what is going on... HEARY BREAKING and I am SO sorry you have to go through this. I found your blog from a friend (ashley Rogers) and would love to look on it and see how everyone is doing. We have a blog as well. thewyeths.blogspot.com. We sure miss you guys around here. That cul-du-sac is WAY too quiet.
Love, Jen Wyeth and family
I hope your week is getting better after such a tough start. Tell Josh we love him and are praying for him--as we are for your whole family!!!
Ruth, I wish I could give you a hug just like you have so many times with me. I love you.
We are always praying. I don't think there is a "right way" to be a mom and have often found comfort in believing that our children truely do know the intent of our hearts even if we don't always get everything right the first time. Your Josh's mom, and he needs you, whatever that is!
Give Josh a big hug for the boys, they loved their movies, Lukey carries around the Bob the Builder, and I think that we've watched Fox and the Hound at least five times! They said to tell the kids thank you for sharing their special stuff.
Call me when you need to.
Love you
Lanae
Ruth, you are a wonderful mom and Josh knows that you love him greatly. Keep your chin up, it helps Josh and the rest of the kids keep their chin up. It is rough right now, I know what you're going through a little bit. It the anti-nausia and steroids help he should do better for you. You might want to pick up some Pedia Ensure to make sure he is packing on the nutrients for the little that he takes in. Would it help to load him up with a buch of pillows so he is not sleeping flat to avoid a little bit of the swelling? Also, check with the doc office or at the chemo/radiation center to see if there are any support groups, also I found with Jody's dad the the nurses at the chemo center were very helpful with qhuestions, concerns and tips.
We love you and you're family soooo much. You are in our thoughts and prayers. I think about you daily. Keep up the excellent work, you are loved in so many ways and are a strength to your family, friends and more.
Love,
Susie & Jody Collins
and family
Hi Ruth,
We (Robert, Sarah, Evan, and I) are going to be passing through your way next week during our spring break on our way to see some church history sites. We are going to Denver to see Mom, Dad, and Louise, and then decided since it was only another 8 hours, we'd check out Winter Quarters and Council Bluffs, and then head down to Liberty and Independence, MO. We would all love to come by and say hi for a little while, but only if it would ease your burden, or make Josh's day a little better. I know things are really rough right now for you all, so we certainly would not want to expect anything of you, but if you think that a short visit would cheer Josh up, or give him something to look forward to next week, we'd be happy to see him and the rest of your family. We'll call you at the beginning of next week and see how things are going, and even after that play it by ear.
We continue to pray for you and send good thoughts your way.
Lots of Love,
Kim, Robert, Sarah, and Evan
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