Wednesday, September 16, 2009

Chemotherapy 101

I drove to Staples yesterday to buy a binder with tabs for the information we have been receiving. We also received a binder from our social worker, so we have two full books of information important to the well-being of our little guy. Not only do they give us information, the nurses here are actually staffed to allow frequent and intense teaching sessions. We were glad to have Randal here, because Matt and I were in Chemotherapy 101 all day. Matt was glad I was mentally present for the first time since we arrived, and I know why. It was overwhelming.

Chemotherapy (cancer medicine) affects all rapidly growing cells-- normals cells as well as cancer cells. The cells lining the mouth, stomach, and roots of the hairs are examples of cells that grow quickly. That is why Jace will lose his hair and sores may appear in the mouth and stomach after chemotherapy is given. Chemo also affects three important blood cells: red blood cells that carry oxygen, white blood cells that fight infection, and platelets that help clot the blood. I received help yesterday to find a book at Barnes and Noble which I can use to help Jace learn about these important facts... so if you need to look at it sometime let me know.;)

One of the first paragraphs in a hand-out we received says, "Many parents wonder what caused their child's cancer. Almost all cancers in children occur for no known reason. Most arise from non-inherited changes in the genes of growing cells."

We have a calendar for Jace's treatment for the first month, or his "Induction." (This is the first stage of five including: Induction (1 month), Consolidation, (1-2 months), Interim Maintenance (2 months), Delayed _____ (something I can't remember right now) (2 months), and Maintenance (2 1/2 years to 3 years). The first stage takes us through October 12. Every day Jace will take or be given one of four meds. Some days are more intense than others. On Mondays, no matter what, we will be here in PCMC. After this week, the other days can be administered at home. BUT, this is all dependent on many factors including how Jace is doing...if he is fevering, etc. We are SOOO lucky to have a local Pediatric Oncologist. Everyone here speaks so highly of Dr. Hancock, and we are thrilled that when we return home we have a very near resource.

Is your head spinning yet? Matt and I feel your pain.

Jace is MUCH better tonight after his transfusion. It took until about 9 PM for him to get much energy back, but he's watching TV now. We had an emotional day- dealing with the changes our lives are destined to have for the next while: Jace's numbers were up enough that they let him go outside on a patio today. He was so excited to go out- for the first time since Friday, but after placing his face mask on and walking to the 3rd floor, his energy was fading. Then he realized he couldn't sit in the sun, because of the chemo...and he'd have to leave his mask on because there was dust in the air...and after all this, he didn't have the strength to walk back. Matt carried our little man back to his room. It broke my heart to see my touchdown scoring, bases running, ball of fire crawl into bed and fall back on his pillow.

But, like another dear friend pointed out tonight...3 days of chemo down and counting. We can do it. Although we feel like we will never remember the things we've been taught about how to care for Jace through this Chemotherapy process, we find strength in all of the things you are doing for us. I'm nervous to start listing them, because I know I'll leave something out. Please just know we appreciate all that you do. When Jace heard he was on T.V. tonight he said, "Man, people are going pretty crazy over one little sick kid."

21 comments:

  1. Hey Jace....not cool on loosing your hair. Although, I'm sure you will handle it with style. I do have two wigs you can borrow....but they are pretty girlie. (Hey, I'm just kidding with you...but I did have to offer. LOL) You will just have to make good use of all the baseball caps you have.
    I got sores in my mouth too. But not very many. They gave me some cool mouthwash that numbed it. I'm sure those great nurses I have been hearing about will have some tricks up their sleeve to make you more comfortable. You are slamming those chemo treatments down!!! I got one every other week. At the rate you are going, you are going to be done with them before we know it. Hang in there!!!

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  2. this is kathy swenson again...thank you so much for sharing details of jace's treatment plan! also, i wanted to give you a blog that i got from my other daughter-in-love, www.sweetbrinley.com this is a blog about a little girl(3 yrs. old) who is also being treated at primary children's for ALL. she was diagnosed 1 year ago. i learned from her blog that this is national child cancer awareness month, and this week is actually 'awareness week'. i thought there might be some information that you would find interesting. i can only imagine what you as parents are feeling in your hearts. we must remember that heavenly father knows that same feeling as he too watched his son suffer, you are both made in his image and can endure. if i could be there i would give you all a hug, kathy

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  3. Jeff and I just got back from South America last night. Andy told us about Jace so I looked at your blog. We are so sorry that you are having to deal with this. Jace is in good hands. Let us know if we can anything for you. A hug for all of you including your wonderful parents.
    Jeff and Mary Zollinger

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  4. Amy,

    I found out about your Jace from your sister in-law at gymnastics class. I read your entries with tears in my eyes.

    I admire you for your ability to express your sorrow and love so eloquently. (Are you an English teacher or something?) I wish that I would have used this blogging resource when Dale had a transplant over 2 years ago.

    I even feel inspired by your love-network of family and friends and would like to become a part of it!

    I send my love, my hope and my friendship your way.

    Sherri

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  5. Hi Amy- I'm not sure if you remember me or not from Madison High, Jenny Kindred. I just heard about your son and my heart truly goes out to you. My son Ethan (who is 6) was diagnosed with ALL in Feb. So I know exactly what you are going through. I know how your whole world has been turned upside down. We are in Ethan's 7th month of treatment and he is finally into maintenance. If you EVER need ANYTHING, or need someone to talk to who knows just what your going through, PLEASE dont hesitate to call. My email is westonfam06@hotmail.com and my phone # is 801-458-7695. From meeting other families during treatment we sort of have our own 'club' :) Please email me so I can write to you some more intimate thoughts and advice that I have for you as you and your family start a new trial. Best wishes and take it hour by hour :)

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  6. Jace it's because we ARE crazy about you! We love that your mom is sharing information with us. Some day Jace you will look back on this and be very appreciative for these journal entries. You will gain strength from it continually through out your life! We all love you and want to do everything we can to help you get better. You are a great kid! I hope you will beat your dad in an xbox game today! Love you all and please know you are in our thoughts always. Leon, Marilyn and boys. P.S. Jace next time we see you at a game I know Hoosier is going to want you to play with him!

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  7. Matt, Tell Jace that those of us that are so much better looking than the rest of society, must sacrifice our hair so everyone else doesn't feel so bad about themselves.

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  8. hi amy!
    thats awesome that they have classes for the parents to learn! i bet its way easier than trying to decipher things you find on google but props to matt for diving straight into that!! when my grandma lola had her cancer she was able to get treatment from dr hancock in rexburg and she said she loved it there and they took such great care of their patients and it is such a good enviornment. i went with her to a couple of treatments and its much less intimidating than hospitals for sure! i sure hope with all my heart that he is able to go there!! and tell jace that people are going crazy over one cute little STUD is what is going on here!!!

    love you guys!
    aub

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  9. We're going crazy over one cute, brave, strong, and tough little kid who just happens to be sick!! Amy although your blog makes me cry I can feel the strength of you and Matt and your support network when I read the blog. It is a reminder for all of us to stop and appreciate those around us and our loved ones. I appreciate the way that you write your blog and also appreciate the way that you explain the steps and "healing" process that Jace's body must go through to get better. I guess I check back to see how things are because we feel so helpless and this is the only thing we can do! My Jayce keeps asking me how Hayden's little brother is doing. It is funny how the kids who went to Sheila's seem to have a "bond" even though time goes on!Take care of yourself and may more tender mercies come your way!!

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  10. LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE LOVE
    LOVE YOU JACERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Thinking of you every hour of everyday! Reagan, Dylan, & Dawson Grover

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  11. Jace:

    I saw you on TV last night, it was Awesome! You are famous. I'm trying to talk my dad into letting me skip school on Friday to come see you. Max wants to come too, but I don't think dad will let him. Maybe I'll see you on Tuesday!

    Jacob Moore

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  12. Sorry, (Dad doesn't know how to type). I'm hoping he'll let me skip school next Tuesday!

    Jacob.

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  13. I don't know you, and you don't know me, but I saw your story on the news. I read through it all and I just want to say that my thoughts and prayers are with you and your family! Jace sounds like a tough little guy and I can tell he is a very choice child of God.

    Sending all my love and prayers :)

    Love- A Stanger- Heather Sellers

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  14. Hi Amy (Mrs. Leatham), my name is Kassie (Bateman) Garlock. I am sure you don't remember me, I haven't been at MHS since 2002, but I sure do remember you. I am so very sorry to hear about Jace's illness. I have been following your blog daily and I am inspired by your strength. I wanted so much to do something for you, Jace, and your family, but since I am living in Phoenix, I wasn't sure what I could do. But then it hit me....For the last couple years I have been designing blog headers for people and thought with all the traffic (almost 12,000 hits in 5 days!!!) on your blog, I would make a header for your little man. (I hope you don't mind I took the picture off your blog.) I know you have a lot going on right now and this is the last thing on your mind, so it won't hurt my feelings if you don't use it....If you would like to see it though I put it on my blog (www.tomandkassie.blogspot.com). If you want a copy of it to put on your blog header, just email me (kassiegarlock@gmail.com) your email address or leave a comment on my blog and I will send it to you with instructions on how to upload it to your header.

    You guys are absolutely amazing and our thoughts and prayers go out to you all.
    Kassie Garlock

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  15. Jace-
    You don't know us but my husband is GI Jones-your mom and him are friends through MHS. We heard about your blog through Jon and Amy North and immediately got on line and read al these wonderful posts about you and all you and your family are dealing with.

    When my sister was little she had cancer-neroblastoma (sp) She is all grown up now and doing great. But, I remember the pain she went through. It was scary but Heavenly Father blessed our family with the peace that she would pull through.

    I think you two might be a bit alike-1st you must be pretty tough to be tested in this way. 2nd you seem like a fighter-just like my sister.

    GI Jones is going to mail you some cool stuff to keep your spirits up. You and your family are in our prayers.

    When you get better we would love to meet a real live hero.

    Love,

    The GI JONES FAMILY

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  16. Jace,
    You have some AWESOME friends and schoolmates here at Hibbard Elementary!! This morning was so fun and I hope you enjoy it and get fired up to Beat This and GO! FIGHT! WIN! Ironman Jace !

    There was a second part to this day: I'll let Skyelar show you the note and explain what happened during Pacers....you sure have some great friends :) Unbelievable and touching!
    Hang in there....Mrs. Clements

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  17. Dear Amy and family,

    Quinn has been spreading the word about your sweet Jace and your blog. I am deeply touched. I have noticed how much FAITH you have and are certainly gaining from this unfortunate experience. I felt drawn to all your journal entries on your blog not only for the information, but to see your faith and the gratitude you have for the many "angels" who have entered your life during this past week. I will pray for Jace and your family. I also send "ALOHA" from Hawaii where I currently live. It is a word of many meanings but the best one is LOVE!

    With love,

    Marlynn Winkel Hunter

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  18. OK, I have resisted leaving a comment because I figured I was an outsider looking in, but now I see many others are doing the same. My name is Lindsey Livingston--I am Valerie Cobabe's daughter. Amy's mom and my mom have been good friends forever I think, and Viki has been wonderful to my grandpa and my parents for so long! I just wanted to let you know you have yet another family out there praying for you. When my mom told me about Jace, and this blog I cried that entire day! My oldest turns 6 next week, and I cannot imagine what you are going through right now. Such a hard time for all of you, and whether you see it or not, you are all being so brave. Jace--you are my newest hero. My daughter was born with a congenital heart defect, and we have have come to love Primary Children's hospital. What a blessing to have such a wonderful facility where they care so much for kids--not just their illness, but their overall well being. We live here in Utah, not too far from the hospital, so please let your mom know if there is anything at all we can do for you.

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  19. So, I've been following your blog, and I don't even know you at all and even though I can't empathize what you are going through, I'm a mom so I'm crying along with you. I've thought so much about you as parents and about Jace, and I just can't help but think you are one special family. I keep this quote in my scriptures, and hope you don't mind me sharing it with you. "No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called children of God...and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us most like our Father and Mother in heaven." (Orson F. Whitney)

    What great examples you are of strength, patience, endurance, and faith. Thank you! We pray that Jace gets well!

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  20. I met Dr. Hancock right after he moved to Rexburg. I was with my Dad who had Lymphoma. What a great guy and great doctor. You're so lucky he moved to Rexburg when he did. Another tender mercy.......

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  21. Ironman:

    Your brother did an awesome job on TV last night talking about you. We all stayed up to watch. Hayden also played great in our football game. You should see all the things the football players are doing for you. You're awesome!

    The Moores

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