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May 21, 2011

This is not the title I want to use for this post, but even with my moniker I have made it through this past TWO AND HALF years with relatively little online cussing. So if you don’t know me, just guess what I want to say. If you do know me, then it’s likely that you already know what I would say.

We’re done.

Just typing that makes me like sob/cry/laugh. I’ve experienced the strangest sensations about ending this whole thing.  It is truly indescribable. And as with all things, I am gonna try to describe it, but first the play-by-play.

May 8, 2011   Mother’s Day–pancakes, that is all you need to know, besides the last day that Isa took 6-MP.

May 9, 2011

Isa’s half birthday. We started celebrating half birthdays in earnest in May 2009.  Isa’s 3 1/2 birthday. If I recall we had strawberry shortcake that time. But since then we’ve determined that we eat pancakes for our half birthdays and cake for our birthdays, unless of course you’re Mama or Papa, our birthdays are six months apart, so we get both!

After pancakes we drove, not leisurely, Papa gets so cranky when we have to leave. I can’t understand why, when he says we have to leave in five minutes I am always on time sitting exactly where I am supposed to be sitting with everything that I need. We never, ever, ever leave late. This is just one of his quirky crankies.

But even with me being super on time like we usually are, Papa stopped to get kwaffee… yum….  and surprised the girls with cookies!!! woot, well he tried to surprise them, Isa asks every time for chocolate chip cookies. He told her to shush and just wait, that asking for everything all the time, makes it no fun to surprise her.

Then off to the wait from hell, oh wait, I wasn’t cussing. Oh shite, does it make it better if I use Scottish slang?

Where was I… oh yes, waiting.

We waited a really long time.  But during our little wait the nurse practitioner we’ve been working with came out to us. Freaky, I was like “what’s wrong you never come out here.” But basically she said that there were no rooms and then she said that she and the doctor had talked over the past month, and in light of Isa’s body sort of rebelling (large spleen, low platelets) and because she was on the HIGH risk protocol with oodles of chemo, that if it was okay with us, they would just skip the last vincristine and dexamethasone pulse. Um, hello, yes, I am so fine with that.

So at that point, I was like. We’re done, they really did it, they took her off all her medications! (okay she’s still supposed to take Septra for another 6 months)

It was like the opposite of being told your child has leukemia. Instead of spiraling inward, I spiraled outward. Your mind expands, and takes in all the opportunity that you might not miss. Then it hit me. It had been sneaking up on me for nearly a month, and was getting really close the past week.  But at that moment, Survivor Guilt hit me.

I know it wasn’t me who went through all of this, but it would have been me without a child if anything had happened.  So I felt guilty. For Sammie’s mom, Anika’s mom, Jaymun’s dad, Tyler’s mom & dad, Jesse’s mom and grandma, etc… you get the idea, those kids didn’t make it out alive, and I feel guilty. Like I want to sneak off and hide and quietly jump up and down, then look over my shoulder.  You know, just to make sure that no one was looking.

Maybe we could pretend the whole thing didn’t happen? No, I can’t. It  did and it  sucked, but now it is over and I feel sort of guilty. Hard to describe exactly.

Okay, so they accessed Isa, got her blood and all went well. Discussed taking her port out, so we’ll do that in a month. So strange. Like okay, so long and thanks for all the fish. No biggie.  You just spent a gut wrenching two years of your life not knowing if your child is going to live or die, but you’re done now and we’ve got other patients to treat.  C ya.

Our NP was great, she gave Isa a medal and told her that she was our hero. Isa has worn that medal nearly every day since she got it. It has already fallen apart twice.   And she rang the bell.  When the kids go OT they get to ring the bell. I have seen only two other children ring the bell. If I saw a group gathering at the bel,  I’d try to be supportive without being intrusive. One little tiny girl popped into Isa’s bell ringing, curious about what was up.   Isa said she wanted to ring the bell for her Uncle Mark, who didn’t get a chance to ring it.

It still seems surreal. She’s done. I teased her last night by saying, I’m going to have to wake you up later to give you your medicine. And she said, “but mommy I didn’t eat any cheese.”  (6MP can’t be taken with dairy)  And I said, I know you didn’t eat any cheese, you don’t need to take any medicine.

After the bell ringing, with no meds to fill we went to the gift shop where Isa bought Mark a balloon. She wanted to eat at King Wok, vietnamese, but instead we convinced her to go to the deli for corned beef. (All for practical location stuff not because we didn’t want Vietnamese.)

After our late lunch we headed to the cemetery to thank Mark for riding along on our journey and to ask that he take off to help some other child. We had picked the Mickey Mouse balloon to leave  for him, the groundskeepers must love us.  Most certainly an emotional visit. Leaving him even though I’ve never met him is so difficult. My father-in-law would sometimes visit the grave when on break from work. What could he do, besides walk away. Even after 30 years it is hard for Money to walk away.

Is there any way to whisper online?

My kid is still alive. At least for now, but even still, she managed to survive the treatment. The treatment is done, she is OFF treatment because she finished her protocol, not because her counts were too low, or she was too sick to continue.

Today, at this point in time, for this moment she has beat leukemia.

Labs from 5./9./11.

Reference Range (for normal)

  • WBC 5- 17
  • RBC 4-5.2
  • Hgb 10.2-15.2
  • Hct 36.0 -46.0
  • MCV 78-94
  • Platelet  150 -450
  • Moncocyte 2-11
  • Absolute Neutrophil 1.5 – 10.2
Isa’s Bloodwork
  • WBC 6.5
  • RBC 3.9
  • Hgb 12.2
  • Hct 36.2
  • MCV 93
  • Platelet  131
  • Moncocyte 5
  • Absolute Neutrophil 5.3
Folks her ANC was 5300. It hasn’t been that high in over two years!  I promised the NP that I’d been giving her the medicine. She said she could tell because the MCV was so high!  Thank goodness, wouldn’t want to get charged with some sort of crime for not giving her the meds.
12 Comments leave one →
  1. natascha, jack, maria permalink
    June 10, 2011 1:29 am

    Sitting here with tears streaming down my face as I read how this journey has ended for you – with positive news. I cant tell you how happy we are for you and your family. And jump up and down – you all deserve it.

    Thank you for sharing this journey with us.

  2. June 1, 2011 8:05 pm

    I am so happy for you and your baby girl!! I understand completely what you are saying… I think a lot of parents who have been in your shoes have felt the same way. But try not to dwell on it too much…you are a lucky mama and your girl is even luckier! You shouldn’t have anything more to dwell upon than the joy in today. Such wonderful news!!

  3. May 29, 2011 8:36 am

    I decided to give your blog (well, more you) an award. Pop over to my blog to see it. I don’t care about linking back to me….it is more the message of the award that I am focusing on.
    Katy xxx

    • May 31, 2011 4:22 pm

      woot woot!!!
      Also, I think another little girl I follow lost her hair again….. just so you know.

  4. martha williams permalink
    May 25, 2011 1:30 pm

    well said. A journey one could only celebrate. No guilt. When Mark left this world I wanted to ring bells because I knew he was home for sure and never had a chance. Isa had a chance and got to ring her bell and I cannot even begin to say how that makes her grandpa and I feel. She will ring many more bells I feel sure. What a big job for a little girl.

  5. meimeiloca permalink
    May 22, 2011 10:57 pm

    i’m so happy for you and g and money and ISA. i love you jiejie. breathe in the relief today.

  6. christine permalink
    May 22, 2011 12:30 am

    This is the best news ever!!! Take good care of Isa and each other. Give her a big kiss and hug for us. Go have some ice cream or something!! (: XXXXOOOO (one for each of you)

  7. Quinns mama permalink
    May 22, 2011 12:09 am

    Con grads! And yes I get the guilty feeling too. I am afraid that if I celebrate too much I might wake the leukemia gods and they will seek vengeance for getting under their radar. Does that make sense or just sound crazy? I worry about relapse. How can we not? But ot land is a much nicer place. The problem is, now all the emotional crap that we have kept buried starts to surface……

    I am so happy that you are all in ot land now. Please come and visit. I still wanna have a bonfire of medical supplies and use all the pill bottles for target practice.

    • May 25, 2011 12:58 pm

      I will bring my guns… and maybe we could fill bottles with blood… okay, maybe that is WAY too gross.

  8. May 21, 2011 10:57 pm

    Crying here…don’t feel guilty, celebrate…my God you deserve to. I cannot speak for those who lost the fight but I think everyone would want you to shout from the rooftops how amazing it is that the treatment is over, Isa is alive , and you are still sane!

    I wish I could run over and hug you, hug Isa, tell you how wonderful this news is. I am so happy…the tears are blurring my vision (happy tears).

    Jump up and down, shout aloud…you are happy and that is something to cherish, not hide.
    Love and hugs,’Katy xxx

    • May 21, 2011 11:12 pm

      Yes, logically I know that it is, and it isn’t as strong as it was that day for sure. I still wonder if there is another shoe, or if the whole closet has been cleaned out. She’s still getting big bruises, and her platelets must be down. Her spleen is still enlarged, so I guess we’re not out of the woods yet.

  9. nalene permalink
    May 21, 2011 4:38 pm


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