Current Treatment (AKA Long-Term Maintenance)

Well, we haven’t written any new posts in a while because there really hasn’t been a lot to say! Which is good! Since her last hospital stay at the end of February, Emily has been healthy and doing well. We saw her oncologist two weeks ago, and he was very pleased with her overall health. She has FINALLY gained 1 pound, which puts her at 23.6 lbs, just shy of the 24 lbs she was when diagnosed 13 months ago. She has also grown 1.5 inches taller over the past year, so while she is still quite tiny, she is growing, praise God!

Emily and her best friend, Kayla, who is ten weeks older.

Emily and her best friend, Kayla

Many people ask whether or not Emily is still in treatment and what her future looks like. She is in the Long-Term Maintenance term of her treatment, which will last until July 2014. This is what that looks like:
* every day she takes a chemo pill (6MP) at home
* once a week she takes a bolus of a second kind of chemo (Methotrexate), 4 pills at a time at home
* once a month she takes a round of steroids (Prednisone), twice a day for five days at home
* once a month she gets a third chemo (Vincristine) through her central line at the Cancer Center
* once a month she gets an antibiotic infusion (Pentamidine) through her central line at the Cancer Center
* Her maintenance treatment is counted in three-month cycles. During the first two months of every three-month cycle, so 8 times in a year, she gets a fourth chemo (Methotrexate) into her spinal fluid via a spinal tap.
* The Home Health Nurse also comes out once a month to draw labs, and if Emily’s IgG counts are low, she goes to the Cancer Center for an IVIG transfusion.

All in all, the current treatment has been very relaxing! Gone are the daily trips to the Cancer Center, gone are the twice-a-week visits by the Home Health Nurse, and gone is the constant worry about infection. We’re still very careful, of course, especially since we now know Emily’s antibodies don’t work at all even though her ANC is high, but we don’t feel as consumed by her treatment as we have.

Emily has been handling her treatment really well. The one week of the month when she receives her spinal tap, Vincristine, antibiotic, and steroid are her worst. She is tired, weak, grumpy, sometimes has full-blown roid rages, struggles with constipation, doesn’t sleep well, and doesn’t eat much (the steroids make her hungry, but the nausea and general malaise kill her appetite). We are learning to prepare for this week by stocking tempting foods, prophylactically giving Colace (a stool softener) and nausea meds, and trying not to plan too much out of the house. It’s a good week to sit at home and read ๐Ÿ™‚

I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal. The boys are all playing baseball again this year


The girls play together, brushing each other’s hair

brushing hair

and we’re able to focus on things other than cancer. It’s good.

Prayer Requests:
We have met many precious friends who are also undergoing medical treatments, and a couple of them need prayers. Amanda, 16 years old, beautiful, kind, loving, and brave, who I can’t write about without crying, is fighting recurrent progressive rhabdomyosarcoma. Her cancer came back and spread. Please, please pray for a miracle.
Olivia, who is the same age as Emily, is in kidney failure. She has a rare, genetic kidney disease that is currently in remission but is not curable. She will deal with it her whole life, and she needs prayers to have a whole life. Her twin sister also has the disease, but praise God she has not had the fight Olivia has had.
And please praise God with us for Emily’s health! We feel very lucky that she is responding to treatment. Also thank God with us for her team of doctors. They are simply amazing, and I am so grateful God chose them to care for Emily.


7 responses to “Current Treatment (AKA Long-Term Maintenance)

  1. So wonderful to hear! Chrissy, you are adjusting to your “normal” now. The last part of all of this confusion is accepting and adjusting . . . And it’s ok to grieve, don’t forget to cry. You know my prayers are with you and your lovely family. I will pray for these others you have introduced us to. It is funny – life goes on for so many; same daily routine of breakfast, kids off to school, dad and maybe mom off to work, lunch, rush home after work, dinner, kid activities after dinner – you know the old routine. But for others, like you and your new friends, life is changed forever. A new routine develops, the parents must accept and adjust or they will go insane. An unknown and new emotion surfaces and the hard part it can be an extreme anxiety and uncertainty or a deep underlying trust in God that He DOES see and care and is there in the midst of every situation and circumstance. Through all of your family’s journaling I can see you are all living in the second emotion. God bless this glorious Easter morn’, I imagine there is much excitement in your home with kids! We are past egg hunts for now but my adult kids still want their Easter candy and chocolate rabbit! Jesus has risen!

  2. We continue to pray for Amanda and Olivia, and their families, that God wraps His arms around them and prepares them for the road ahead. I thank God, for how lucky we feel, shows how blessed we truly are. Im glad you wrote an update, its been on my mind and I hadnt had a chance. It’s perfect timing with the joy of Resurrection.

  3. What a great update to read! It still seems like you have a crazy schedule, but I guess compared to normal, its easier! ๐Ÿ™‚

    Prayers for all these brave children and their loved ones!

  4. Moira A. Fitzgerald

    My prayers are always with you and yours. I will add Amanda and Olivia to the prayer chain. Love to you all.

  5. I think about Emily and your family and continue to keep you in my prayers. Thankful that Emily is doing better! May the Lord bless all of you!

  6. Chrissie –

    It was great to hear an update on Emily especially since I have been thinking SO much about you and her. Thank you for listing her treatments so we have a picture of life as it is. I pray this routine stays just like that and nothing upsets it! Can you let me/us know which week is that hard one for you all so we can be really praying!! Is it the same each month, ie the 2nd or 4th?

    I get so emotional whenever I read your posts. Life has hit hard for several of my friends, and for us too at times. My best friend lost her son at 20 years old a year ago and she has been blogging. Everyone one of her blogs brings me to tears like yours do…. Tears of sorrow because life is hard, but tears of thanksgiving because we have a big God that provides for us in the midst of our trials. Here is her blog!

    The Lord is my portion and it is to Him I run every morning, and sometimes during the day too, when I just can’t keep it all together. Here are a few verses that have been especially encouraging to me. I hope they will encourage you as well.

    Isaiah 54:10 – “Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,’ says the Lord, who has compassion on you.”

    Philippians 4:4-7 – “REJOICE IN THE LORD ALWAYS….Again I say it, rejoice. Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything by prayer and petition, WITH THANKSGIVING, present your requests to God. And the Peace of God which transcends ALL understanding, will guard your hearts and minds in Christ.”

    Matthew 11:28 – “Come to me all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

    Psalm 34:17-18 – “The righteous cry out and the Lord hears them. He delivers them from all their troubles. The Lord is close to the broken hearted and saves those who are crushed in spirit.”

    Psalm 46:1 & 2 – “God is our refuge and strength, an ever present help in trouble. Therefor we will not fear.”

    2 Corinthians 12:8-10 – “My grace is sufficient for you, for my power is made perfect in weakness. Therefor I wil boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecution, in difficulties. For when I am weak, then I am strong.”

    Nehemiah 8:10 – “…. the Joy of the Lord is your strength.”

    • Oh Elisabeth, your friend’s blog made me cry too. What unimaginable pain ๐Ÿ˜ฆ She will remain in my prayers, and I’m at least glad they have the hope of reunion the other side of heaven.
      Thank you for continually praying for Emily. Her week of more intense treatment begins next week, Monday the 15th, and -barring any delays -it is then scheduled for four weeks after that, and so on.

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