Skip to content


February 12, 2011

Did it scare you?

It did me too. Monday, January 17, on our regularly scheduled date we didn’t exactly hear this word. What we heard was something sort of garbled, similar to  the sound that comes from the cassette tape left in the front seat during the summer just a little too long.  Or perhaps the sound that Robin Williams, as Mork,  made when he was in a “time warp”.

Nothing was right about the day.

To get to the hospital we leave at least two hours before our appointment. Most of the time, we get up, throw stuff in the car and drive away. As I was getting ready, Money said, “I am brewing coffee.”

With panic in my voice I respond with a squeaky, “Whaddaya mean making coffee, you never make coffee, you can’t make coffee.”   This obviously makes no sense, since we both welcome coffee in any practically any  form at frequent intervals throughout most days.

Then the really weird thing. I put on make-up.  Has Jerseylicious gone to my brain? Thanks Olivia, now I am creating a smokey eye before hosptial day.

Then, he, my husband had the audacity to turn left.  LEFT!!  The day just gets weirder.

We stopped for gas.  We never stop for gas.

He bought snacks at the gas station.  Do I really need to say that he never buys snacks?

After arriving at the parking garage things started to seem normal again, but started going awry once we hit the waiting room.

The rooms have been rearranged, computers added, a nurse who normally worked in the infusion room moved up to the front, and the doctor rather than the nurse practitioner.  Seriously. Everything was different. Certainly a worm hole.

Dr. Hill came in, felt her belly, asked a couple of questions then came back and said, “We need to get a bone marrow.”

This is not what I wanted to hear. This information hit me in a way that the first diagnosis did not. When someone tells you that your child has leukemia, you have no idea what to expect, but if someone tells you your child has relapsed, you know that you will be repeating the entire process. The entire thing from the beginning. Also, if your child relapses on treatment.  Ouch.  I felt sick. To both our credit, neither one of us vomited.

My first thought was, ‘I need a cancer parent.’  I reached out to someone who I’ve met online. It was definitely the best move. Even getting an unofficial second opinion from their oncologist!

Because Isa had something to eat, we could not perform the BMA and had to come back. Most of the evening we spent crying and moping. Feeling sick and feeling sick and tired of cancer. The feeling, a combination between, hopefulness and complete despondency.

Tuesday the 18th could have been one of the worst days of my life. Luckily for our family it wasn’t. Isa’s bone marrow checked out okay, but that doesn’t explain her low platelets. After an ultrasound with flow the doctors found no problems with either her liver or her spleen.  And that still doesn’t explain her low platelets.

The oncologist approved the vincristine, dexamethasone sent us home and back on meds,  one 50mg 6-MP a night and four Methotrexate.

20 Comments leave one →
  1. Quinn's mama permalink
    March 14, 2011 2:35 am

    When is your OT date? Ours is 4-6-11.

  2. spacegeek permalink
    March 7, 2011 2:08 pm

    Fcuk! I’m tearing up in relief at the end of this post. We are 8 months from OT, and I hope to God we all continue this crazy path as quietly as we all can. Love to you all.

  3. shakesrear permalink
    March 7, 2011 6:30 am

    I just wanted you to know that I read your blog. I usually don’t know what to say, but I wanted to let you know that you’re all in my thoughts. I’m working on getting tickets for August. I can’t wait to see you all! Unfortunately, with the high ticket prices, we’re leaving the girls with their grandparents.

    • March 11, 2011 12:38 pm

      Glad that you get some time away. Surely the little one doesn’t need a seat? My girls have been practicing French. Guess we’ll just have to use it when we come to visit. It will be a good time to reconnect with yourself and your husband. See you soon!

  4. February 26, 2011 1:49 pm

    Low platelets can be a worry, I’m glad the tests came out ok. This road never seems to smooth out. I don’t know you, but from one cancer mom to another here is a big hug. Or if your like me, a big glass of wine!

    • March 1, 2011 5:41 pm

      Thanks for both. Interestingly I’ve made it through this without any wine… lots of whine! Somedays it could be the perfect thing. Like today. Not so much for the really bad days, you gotta stay clear, and not for the really good days, why miss them. Just the so-so days…(for me of course.)

  5. Ana Rodriguez permalink
    February 15, 2011 4:29 pm

    Hi, I have a question, has Isa ever had hair loss or thinning during maintenance? Eva’s hair is falling out a bit and it certainly looks thinner, I don’t know if this is normal and our next appointment is a whole week away.

    Hope Isa is doing well and that you guys don’t have anymore scares like the last one!!


    • February 23, 2011 1:22 pm

      Isa’s hair has been brittle and dry, I am thinking that could be related to the amount of water that she takes in, but she hasn’t had much, if any, hair loss for some time. BUT, I know another girl that has had some with the vincristine.

  6. susan permalink
    February 14, 2011 11:36 am

    prayers and mojo out to your family. I hope that they can figure this out.

  7. Anonymous permalink
    February 14, 2011 7:45 am

    We’re so sorry for the scare and thankful Isa is doing okay. One day at a time.

    God bless.

    The Greens –

  8. February 13, 2011 10:52 am

    Oh sending prayers your way for little Isa and the rest of the family.
    I’m so glad you reached out to someone who is also going through what you are going through. Praying you both will be able to give each other strength.

  9. Quinn's mama permalink
    February 13, 2011 3:42 am

    Love ya back. There will be no relapse in your town, nor in ours. The end of treatment is right around the corner. We are moving to the beach in May (Ventura, Ca). Come visit. I am working on Elke’s family too. We are going to put a big trampoline on the beach watch the girls jump till they exhaust themselves while we drink wine, have a medical supply bon fire, line up old perscription bottles and shoot them with paintball guns, and tease teenagers making out in the life guard towers. A party only cancer parents could enjoy!

    • February 23, 2011 1:18 pm

      That sounds fantastic! JUMPING… you mean an activity where feet can actually leave the ground!! There has been no swinging or bike riding or scooter riding or sliding or anything for a while now. I have a feeling that we’re coming out of it though. Blood test on Monday will give us some idea of what’s up.

  10. Ana Rodriguez permalink
    February 13, 2011 12:11 am

    My heart stopped at the sight of those words!!! I never read anything so quickly in my life, I am so happy that she’s ok!!

    • February 23, 2011 1:17 pm

      Like I mentioned on the last comment. Exactly the feelings intended. 24 hours of intensity, unlike at diagnosis.

  11. February 12, 2011 8:26 pm

    When I read the title of your post, my heart sank. So glad to hear that the tests came back okay. We’re still praying, as always, for sweet Isa.

    • February 23, 2011 1:15 pm

      That was the exact point. To try to take the reader through the feelings that we experienced that day. It is nauseating just thinking about it again. Thanks for reading and the prayers.

  12. Laura Scott permalink
    February 12, 2011 6:06 pm

    How scary and sick this must have made you. By chance, has Isa been on ibuprofen?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: