Maintenance II, Surgery

Hi all – As discussed in our last blog, Sally began the temporary less intensive chemo plan this month. We had concerns about how her body would react to the change, so far things have been going well. Since the switch, Sally has had a ton of energy, she’s been extremely playful and all over our home. In fact, last week she finally started crawling! If you can remember, Sally never crawled, and we had her almost to the point of walking. However, she then experienced leg issues from the chemo and was unable to stand for weeks. Learning to crawl prior to walking is huge for her long term development, even if it took until she was 26 months old. She still scoots too, but every day she crawls more and more. Here’s a video of her crawling – Click Here.

Since going on the anti-seizure meds, Sally’s GI issues have been manageable, as a result she has finally been putting on weight. For the first time, she has gone over 25lb! You can see the change in her face, especially those tasty cheeks of hers. That is, if you can get past the other big change…hair. Sally’s blond locks have made a return, we can’t tell you how wonderful it is to be able to rub our nose in it again. Sometimes she’ll be sitting next to me and I find myself running my fingers through it. My mind wanders back to the pre-chemo days and how blonde she was.


Before surgery, look at that hair!

We are really enjoying every minute of this “break” in her treatment. However, we also know that some of this is likely temporary, and will revert back once we return to the intensive chemo in January. For instance, we know that Sally’s hair will probably fall out again. We know her nausea will return. In fact, it’s still there as we tried to take her off her anti-nausea meds yesterday and she vomited. She has all of a sudden lost her appetite, we had just gotten her to the point of requesting food, even just to chew on it (she doesn’t swallow). It’s discouraging whenever she takes a step back on something. Overall though, she’s looked and acted much healthier this month.


This is 6MP, a chemo that we have to give her every day for the full 8 weeks. We know it helps her, but it still stinks giving her something so toxic we have to wear gloves and a mask when preparing it. 

We’re using this two months to strengthen her body for the final 8-month home stretch. In fact, she had surgery last week to install a new central line and that night she was crawling and playing as if nothing happened.

We did have a scare with the surgery however. Nicole noted that it was taking longer than expected and sent me a text. I then didn’t hear from her for a long time and started to slightly panic, unable to reach her. Turns out that they saw an abnormality in her intestines and had to send her for another X-ray to determine if she needed to be rushed back into surgery. After the team shared the results with Radiology they felt there was no immediate danger. This is the second time we’ve heard about the abnormal shape of Sally’s intestines, so is something we’ll have to follow up on.


Night of surgery.


Her new central line is in the same spot, the surgeon didn’t feel a new location was needed and wanted to minimize scarring.


Like the first one, the line had to be installed through her neck. Sally had a little bit of tenderness in the area, but were able to manage the pain with Tylenol.

We should NOT (knock on wood) be at the hospital for Thanksgiving or Christmas week other than for a blood check and scheduled therapies. Last year we spent Thanksgiving admitted in isolation, and Christmas Eve at the hospital getting chemo.  We’re happy this “break” is taking place over the holidays. Anybody who knows us well knows that we LOVE Christmas, in fact our tree went up this past weekend. So our plan is to enjoy our little girl’s spunk and live the holidays to their fullest the next few weeks until we go back to the grind in the New Year.

Although with this enjoyment comes anxiety, both Nicole and I have had nightmares recently. Last week I had a very vivid dream where we were told that Sally had relapsed. I woke up crying, then had that realization that it was just a dream. We both know that taking this break is the right thing to do, but also aware that it does bring risks and know it will get harder again. Again, one day at a time.

Outside of that we’re just taking in all the smiles and enjoying Sally being Trouble, getting into things she shouldn’t. We’re also just enjoying family time together, knowing we’re going to have to become more creative about creating fun experiences for the boys since we’ll be limited to what we can do in the colder months. Thomas asked if we could have a breakfast picnic in the living room this weekend. Why not? So we did.


Breakfast Picnic

When life gives you lemons…

As a side note, our friend Kristen organized meals to be sent to us three times a week, it makes life for Nicole a TON easier as dinner is one less thing to think about a couple days a week. We just added some more dates and wanted to open it up to anybody reading the blog. If you’re in the neighborhood you can drop off, if not we’ve provided local restaurants that can send a gluten free meal (our son William has Celiac Disease) if more convenient. Here is the link to the Meal Train page: Click Here.

Please keep Sally in your thoughts and prayers.


9 Responses

  1. Miriam
    Miriam November 17, 2014 at 9:22 pm | | Reply

    Glad to hear Sally’s moving around a lot more! I’ll have to see about getting the girls together to play some more 🙂

  2. Missy Quigg
    Missy Quigg November 17, 2014 at 9:51 pm | | Reply

    Fantastic! We will pray that you are blessed with a festive Thanksgiving and Christmas… full of your favorite places and people!

  3. Douglas & Cecilia Landinguin
    Douglas & Cecilia Landinguin November 17, 2014 at 10:41 pm | | Reply

    God bless to The Kabel Family, love & hugs!! Granny C & Papa l

  4. Joan Galvin
    Joan Galvin November 18, 2014 at 2:01 am | | Reply

    It’s wonderful to hear some better news! You’re always in my thoughts and prayers. There are prayers said for Sally regularly at St. Michaels church, which is my parish. Have a awesome thanksgiving!
    Love, Mrs. G.

  5. Bob and Karen Hoppe
    Bob and Karen Hoppe November 18, 2014 at 8:17 am | | Reply

    One day at a time, Kabels, one day at a time….Happy Thanksgiving…

  6. Sandra
    Sandra November 18, 2014 at 10:06 am | | Reply

    So happy to hear that Sally has peach fuzz, spunk and scooting around, I wish you all a Happy Thanksgiving and Joyful and Peaceful Christmas, Sally is strong and determined even at her young age, she has a great family and extended support. Continued prayers and nothing but happy thoughts and love for Sally and all of you. Enjoy every moment. God bless Sally and her family,

  7. Sister Virginia
    Sister Virginia November 18, 2014 at 2:58 pm | | Reply

    So glad to hear that you have the time to enjoy the holidays. Hope Sally remains stable, happy and hungry.
    God bless!

  8. Sharon R. Kabel
    Sharon R. Kabel November 20, 2014 at 12:52 pm | | Reply

    Thanks for the video and photos of a normal looking Sally! That beautiful hair is a delight to behold! Enjoy Thanksgiving Day next week! Prayers for all of you continue to come your way. Love, Gram K

  9. Michele
    Michele November 20, 2014 at 10:34 pm | | Reply

    I loved reading this! I am so happy that you get a break and love hearing about all the spunk Sally has right now. One day at a time… I hope I can come for a visit after Christmas. So glad you have more reason this year to enjoy the holiday! xoxo

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