• About
  • My faith story
  • Whole30

annkilter

~ What ships are for…

annkilter

Tag Archives: myelodysplastic syndrome

Today It Becomes Real

20 Monday Jun 2016

Posted by Ann Kilter in cancer

≈ 4 Comments

Tags

asperger's, autism, cancer, myelodysplastic syndrome, steep learning curve, Vidaza

Today is Ralph’s first chemotherapy appointment. He gets Vidaza administered via his port (which was placed last Thursday).

For 22 years he has been going to the Hematology/Oncology Clinic to treat for his blood disorder, thrombocystosis. For 22 years, his bone marrow has over produced platelets, and the treatment has been Hydroxurea – an old cancer drug.  His diagnosis is now listed as thrombocytosis – primary; myelodysplastic syndrome – secondary.

I have sat in the waiting room with Ralph a few times in the last year, due to his illness caused by a benign tumor on his small intestine. When other people would come into the waiting room, I would think – that person has cancer. This person has cancer. Such a morbid thought process. Now when medical people and others see Ralph, they are not surprised that he has cancer. He is waif thin.

Last night I was reading through the side effects of Vidaza. Likely near term side effects: nausea, vomiting, fatigue, etc. Longer term side effects due to low platelets, low red blood cells, and lowered white blood cells – fatigue, danger of bleeding, and severely lowered immunity. So I need to take his temp if he gets any fever 100.5 and above, and call the doctor day or night. Watch for any kind of infection. Because of the risk of bleeding, he won’t be able to use a regular razor…I need to buy an electric razor.

It’s a steep learning curve.

Prognosis

15 Wednesday Jun 2016

Posted by Ann Kilter in Autism, cancer, faith

≈ 5 Comments

Tags

aspergers's, autism, cancer, myelodysplastic syndrome

We have so many questions that we haven’t asked yet.

I know I shouldn’t go on the internet, but it’s almost irresistible.

Information on prognosis is depressing. The kind of cancer Ralph has is MDS (RAEB-1), with abnormalities in red blood cells, neutrophils, and playelets.The prognosis I have found is two years to live without a stem cell transplant, and four years with it. But I need to ask his treating doctors about that. His case may be different.

When my son Will was diagnosed with autism in 1994, the information was very depressing, even for extremely high functioning children. Yet, now he is a computer programmer for a very large company, has his own house, and flies all over the country.

At our first appointment with the doctor, we just heard what she said, but we didn’t ask enough questions.

The Big C

14 Tuesday Jun 2016

Posted by Ann Kilter in Asperger's syndrome, Autism, cancer

≈ 9 Comments

Tags

asperger's, autism, cancer, myelodysplastic syndrome

The Big C – Cancer has entered our lives. Two weeks ago, my husband, Ralph, had a bone marrow biopsy. He has had a blood disorder for 22 years, thrombocythemia, so he has regular blood tests to evaluate the effectiveness of his medicine. So when his last blood test a month before the biopsy showed a spike in his platelet count and blasts in his blood, they adjusted his medicine and set him up for a bone marrow biopsy.

The bone marrow biopsy came back positive for myelodysplastic syndrome – a cancer of the bone marrow. We went to a different doctor the next morning, and he was set up for a port insertion, and chemotherapy to start on Monday. It seems lightning fast.

We haven’t begun to ask enough questions or even know the questions to ask.

The plan is for him to have a stem cell transplant in six months. If they can find a donor. If he can gain enough weight (He is 6’1″ and weighs 141 pounds, and it has been on the downward trend). If his cardiomyopathy is mild enough. Nevertheless, chemo starts next week.

I am going to open this blog back up. The focus has changed. We still have two kids with autism and one without. We have issues and needs that are not typical for people with normal adult children.

This is a journey we don’t want to go on, but we go with God.

225517_10150201412236381_2210170_n

Newer posts →

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 525 other subscribers

Top Posts & Pages

  • About
  • Not Like Mom
  • Ten Things I Wish Were True
  • Throwing Off the Label
  • Mary's Wishes
  • Anxiety Overload
  • New Year's Goals, Wishes, Changes, etc.
  • Uncertainty
  • Battling Isolation
  • Emotional Meltdowns

Finally, I’m on Twitter

My Tweets

Recent Posts

  • The Monster Wakes UP
  • So Many Advertisements, So Little Time
  • Blocking Bullies
  • Incomplete Without You – a lecture by Erik W. Carter
  • Collateral Damage
  • He’s Left The Harbor
  • Character and Determination
  • Don’t Get Me Started – A Rant About Grammar, Punctuation & Spelling
  • Exceptionally Forward
  • If Not For Autism….

Parts of my life not related to autism: annkilter2

Egg Drop Soup for Breakfast

Confession – Cheating on the Whole 30

Chocolate chili lunch

Day one completed, Day two here we come

Lidia’s mustard italian dressing.

Blogroll

  • California
  • Fever, flu linked with autism in pregnancy
  • Get Support
  • Joy In the Valley
  • Just a Thought Devotionals
  • Snagglebox – Autism Parenting Support
  • Social Stories
  • When the Enemy asks Questions about Disability
  • Wonderfully Wired – Created to be Remarkable

Recent Comments

rachelcarrera on The Monster Wakes UP
Jerry on So Many Advertisements, So Lit…
Lilka Finley Raphael on So Many Advertisements, So Lit…
rachelcarrera on Blocking Bullies
Ann Kilter on Blocking Bullies

Create a free website or blog at WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Follow Following
    • annkilter
    • Join 488 other followers
    • Already have a WordPress.com account? Log in now.
    • annkilter
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...