Rick took Ricky into the clinic today to get his next round of Chemo. I stayed home with Cyrus and tried to get myself back to being healthy. friends took care of my other two littles to give me a bit of a break. My sister has been offering to take my 3 little ones up to Idaho with her for a little bit. Which is an amazingly kind offer, but I don't know how to set up a routine and let them be somewhere else. I have been fighting a battle for awhile now of how to give each of my kids all of the time and attention they need, and still take care of our home, and myself and my sweet husband. I have prayed to be the kind of mom that they need me to be. I have changed the way I do things to be here more for them and spend the time with kids who need that special time of "watch me do my homework". So I have pushed off the offers to take my kids away as much as I can, because I have been needing to figure it out, and probably because of pride.
I will admit that at the moment the energy of my other kids seems exhausting to me, because so much of my energy is taken up worrying about Ricky. But I spent the afternoon running errands with Abe and the Twins and Cyrus. It felt more normal. Rick called to say they were on their way home, and gave me the update.
The genetic tests came back positive for what they call the Philadelphia Syndrome. This is what we didn't want. As far as I understand, it is a strain of the leukemia found in AML. It is harder to treat and more often has relapses within 3 years. So instead of Ricky being home for almost all of his treatment, he will be spending more time in the hospital receiving a more intense treatment directed at the philadelphia strain. The treatment is more similar to the treatment of the AML, just 2 years, but much more intense. They have found that if they use some of the drugs used to treat AML, that it has proven successful against this Philadelphia strain in ALL. They are doing a study on it right now and have 2 spots left. We really want him to be a part of this, and the doctors do as well. We tried to put in the paperwork for it already, but we have to wait to do more blood work and yada yada yada. So there is a chance that by the time he can get his paper work put in, the last 2 trial spots would already be taken. So if you are reading this, and have been wondering what else we need as far as prayers go.... this would be it. Pray that Ricky gets one of the last two spots. Pray that he gets the drugs he needs, pray that the doctors will do what is right for him, pray that he will be strong over the next years of fighting this. Pray that my boy will be healed and get the opportunity to BE the amazing man that he is becoming.
Again my world was turned on its head after hearing this news. How does Rick go to work, with me being at the hospital with Ricky? How do I save my boy, and raise 2 babies and 5 other kids? How does sending my babies away to family affect them, and our family, and the family they are with? How can I expect so many people to help hold my world together, when I am the one who chose to have such a large family? It is a bit overwhelming at the moment. In the car with Rick last night I just started to scream! But felt like I had to hold it back or I would just lose it.
We have so much support I actually had to ask the ward to only feed us half as much. More people keep coming with gifts for Ricky, and love and support for us all. The kids seem somewhat unfazed and just keep plugging along in their day.
This morning it was as normal. "Mom! It's Dr. Seuss Day!!!!" So we had to hurry and find outfits, in between getting Ricky up for his meds, and feeding a baby, and trying to keep a toddler busy. We were successful though, sending Abe off as the Lorax, Radi as the Onceler, and Eli as a Truffula Tree. :)
I didn't really know how to do this job a week and a half ago.... now I am really lost. I know we will get through this, but wow!!!! If you have the time, pray for all my kiddos. We need it. I miss my happy posts.
Its ok to be lost. Its ok to need help. There is no possible way you can do everything that needs to be done. Your children are extremely independent because you have taught them to be that way, and its one of your strengths. Your kids will be ok. The Atonement makes up the difference between what you can do and what your children need. Cancer sucks. Ricky shouldn't be sick. You shouldn't need help. But you do, and we are all here. THANK YOU for the written update. Love you.
ReplyDeletePS I forgot to add that the good news is that your capacity will grow and you will be able to do more than you thought possible. My favorite quote from Pres Monson is, "My dear sisters, do not pray for tasks equal to your abilities, but pray for abilities equal to your tasks, then the performance of your tasks will be no miracle, but YOU will be the miracle." You got this sista.
ReplyDeleteMaren & Rick, I asked a friend of mine how she would respond to you...her 6 year old daughter has been battling ALL for 2 years...her reply: "I am so sorry to hear about your cousin's son. It breaks my heart to see kids battling cancer. The good new is that ALL is very treatable. I would tell your cousin to accept all the help they are offered. They are going to need the support and help of friends and family to make it through these next several months. The first year is the hardest, but it will get better. My prayers go out to them." I just wish that there was more that we could do on this end...we love you...prayers (Julie, a Stafford cousin)
ReplyDeleteMaren, you may have chosen to have lots of cute little ones, but the choice for one to have cancer wasn't yours. :) You will find your way through the darkness if you follow the light. Whatever happens, the Lord has a hand in it. There is a plan and we may feel confused or lost, but we are never lost with God on our side. OK that's all for now. Love you.
ReplyDeleteYou are in our prayers every day. Even our little 3.5 year old remembers to pray for Ricky. We wish you didn't have to go through this but by the grace of God I know that you will get through it. I was just thinking the other day, How amazingly wonderful your family is. You have an amazing ability to be there for other people. I know that God has a perfect plan for our lives. I am sure that your family is going to be a friend to someone else going through this similar trial.
ReplyDeleteMaren - My heart breaks for the task that has been set before you and your family. :( I want you to remember that we can do hard things together. Love you tons!
ReplyDeleteBehka gave that quote to me too when I was struggling with Jaelle being diagnosed with T1D. I found myself often including in my prayers "please help my abilities be equal to my tasks." Motherhood is already hard, life is already hard and then when screws get thrown in the mix I think to myself "what the heck?" I agree with Behka. But relying on the Atonement is a lot easier said then done, I've often thought about the same thing as you Maren,"I shouldn't accept help, this is my problem, I'm the one that chose to have this many children it's nobody elses issue but mine." There will be a time when you routine and schedule will slowly come into place. Just like bringing a new baby home from the hospital, it takes time to get things back to normal. You are going on two weeks of Ricky's diagnosis and how frustrating it is. We love you!
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