Leukemia Fire

A mom's journey with her daughter's Leukemia

Ember is Still Here

I haven’t posted in a while–not because there is not a lot going on. There is always a lot going on. We are just SO close to her two year maintenance.

It will be easier on us all once she makes it there. It is almost 6 months since her diagnosis. A quick look into my head:

Cancer’s shadow will follow Ember for life. 

 Will she ever relapse?

How do I repair her body after all of this destruction?

Luc has a fever…let me check all over his body for swollen lymph nodes.

We are struggling financially–I cannot work until her maintenance phase is started. I’m terrified; she was diagnosed the first week I returned to work last time. I want her in pre school. She is so smart.

I’m just so glad we have our children. I used to say “At lease we are alive and healthy”. At least today I’m not aching for a lost child.

That is what we are thankful for.

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Doing Well

Ember is back on steroids as of last Friday (10/18/14). She will be taking them every other week for a total of three weeks. She is extra tired and cranky, but still has some periods of good mood and laughter.

She mostly looks like this:

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I’m just trying to stay neutral in my feelings as we get closer to maintenance. I do not want to think too long about fevers, low blood counts, or any other set backs. I certainly do not want to think of late effects of childhood cancer. I’m just thankful to have my sweet girl, as we see so many others leave us.

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Anticipation

Ember presses forward through chemo with no major set backs. Mid October she will begin the most intense phase of chemotherapy (delayed intensification).  A slew of nasty drugs will be given (10+), and it takes place during flu season. If all goes as planned the 2 year maintenance should start around the new year. I’m praying and begging for no additional sickness, as we have had a fever every month.

Two children I followed passed away last week. One family was well aware of their child’s impending, painful death. One family lost their child suddenly due to an infection. I know that tragedies happen daily, and I’m aware that death is a part of life. I just cannot fathom this–even with our own daughter’s life threatened. Most people want to focus on the positive, and project happy thoughts–we must project the reality of death in childhood cancer. Outsiders see cute bald kids smiling at disney world; we watch our fellow fighters plan funerals. 4% of funding is what we get…

Photo on 7-21-14 at 7.02 PM

Those chubby cheeks are back to normal now20140815_182347_HDR 20140821_181922_HDR IMG_20140922_223901 DSCN1033 DSCN1132 DSCN1249Photo on 7-21-14 at 7.06 PM #3 DSCN2090

Four Months In

Four months has gone by so fast, but for some reason it seems like this has been our life forever. Ember’s blood counts are great, and the doctor said we could do more things in public places. She gets a spinal tap 9/19/14, and still has approx 20 days of interim maintenance.

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time line

 

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September is almost here!

September is childhood cancer awareness month. It is also Leukemia and Lymphoma awareness  month. Ember has the most common form of child hood cancer. A leukemia. Let us all celebrate awareness. Of course…it is also like…a million other awareness months, and no one really cares unless it involves them or someone they know. Or if it involves buckets of ice.

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A great week. Mostly.

Ember’s crazy rages are happening less often, so likely behavioral (I still think the methotrexate makes it worse. She’s had two in succession after her last LP). This is good news because it is probably not her brain. 

I was also concerned that her ANC was 4000 (In chemo-world that is high, and can mean some other problems). It went down to 1400 which is a good number for her. 

Everything else at the check up went great. We are still on course and now in “interim maintenance I”. She will be getting the methotrexate through IV and will not need an LP for a while.

 

We also shaved her head. She asked to…and I think it looks much better!

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Another drop in the bucket

Ember is experiencing some strange things:

Major fits of rage that last sometimes over an hour

and

Over 4000 ANC (absolute neutrophil count)- this is not common in chemotherapy. Apparently.

The doctor decided to postpone her Methotrexate LP to see if it influenced her crazy rages.

What does all this mean? I don’t know. The doctors do not know. The internet has some ideas, but none of them are good (think relapse and neurotoxicity).

I’m just going to watch her like a hawk, and see what this next week brings.

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Normalcy

With Lucien’s return comes great joy and great annoyance. That kid is into EVERYTHING all the time.  We were able to do some more “normal” family activities since I last wrote. My parents, James, Ember and I went to Papa’s Seafood. We played out in the backyard a lot. Ember is also playing a lot more in her room, and bossing her granny around. So, everything seems pretty normal other than the remaining chubby cheeks and balding.

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Some may know we had some annoying every day problems pile up on us. One of which was my good ol Prius dying. My Parents blessed us with an amazing gift of a paid off Van. I couldn’t ask for anyone better, and they truly took a huge chunk  of stress off of us. I wish we could have spent more time visiting, but I feel like I’m in a daze most of the time.

I cannot stop thinking, but am forcing myself not to. The result is mush.

 

Friends and Family

I am at home getting some rest in a real bed. Ember will probably be stuck in the hospital until Tuesday or longer. James is a great husband and dad–he’s been by her side nearly every second of the stay. His missing work makes us nervous, but friends and family have given generously (allowing him to spend more time with her).

Thank you all so much for everything. 

Ember’s fever is still spiking, but less often. The doctors would like her to go 24 hours without fever before she is released. She’s generally in good spirits, and looks well. Ember quote: “I know, I know.  You want to go home, but we can’t until I am not sick.”  

Clearly, she is more mature than we are.

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