Changes

From the time of diagnosis, to the end of the first month of treatment, there have been many visible changes in our little man. The picture above was taken his second day home from the hospital, 3-6-12.

Photo above was taken 3-21-12.

Photo above was taken 3-25-12

He gained a little over 5 pounds between the 6th and the 28th. He got the “moon face” which is a side effect of the Dexamethasone (Dex). Along with the physical changes came extreme mood/behavior changes also due to the Dex. He stopped communicating with anything more than mumble or grunt, and he was very sad looking all the time. And he has weakness in his legs, with difficulty walking/climbing up stairs, from the Vincristine (If you check out my post “Medications” you will find all of the meds he is on, or will be on in the future).

Today is April the 2nd. He has been off of the Dex since Thursday, March 29th. He is almost a different person in that short amount of time! He is laughing and being silly again, something we have greatly missed this past month! It will take a little more time for him to lose his tummy (which is rivaling my own baby belly), and for his face to go back to normal…But his mood and behavior are getting better with each day that passes, and for that we are so thankful. We have missed our silly boy!

Remission

Titus is in Remission! But what does this mean?

33 days after Titus’ diagnosis, we get a call from his Doctor today saying that the results from his bone marrow aspiration (done Friday 3-30-12) was negative. This means he is in remission and on schedule with his treatment! Praise God!

Remission of the leukemia is when there is no longer any visible evidence of cancer cells. His doctor describes “remission” as if you are looking at an iceberg…and you can no longer see it on the surface. Just because it isn’t seen, doesn’t mean it isn’t there. Since we have now reached remission, the maintenance chemotherapy starts, which in Titus’ case is 3 years long. The treatment plan over these next 3 years is to keep Titus in remission (If you read my post “treatment map” I have detailed his treatment over the next 3 years).

Thank you for all of your prayers so far! We have a long way to go in this journey of healing so please continue to pray!

What A Day

Friday, March 30, 2012
What a day…

We arrived at clinic today at 8:30am, got to our room, got Titus’ port accessed, and labs drawn. He was in a bad mood, having not eaten since the night before and just not wanting to be anywhere but home…

The Doctor came in to do the bone marrow aspiration/biopsy and lumbar puncture with Methotrexate. The lumbar puncture and med administration went smoothly, the bone marrow was a little painful poor little guy. During the procedures he was under conscious sedation, and he told us “I am a happy boy now”, the only time he was happy today.
Once those were done he was able to eat finally, and his mood was elevated a bit.
We noticed his heart rate was rising and was in the 180′s to 200, which is pretty high, so the nurse began routine vitals…The doc was concerned about a possible infection, so he ordered blood cultures. After watching his heart rate for about an hour, and it not going down, the doctor ordered IV fluids also. He got fluids over about two hours and his heart rate ended up in the 140′s to 150′s.
We finally got to take him home around 3pm and were told to keep an eye on his heartrate and temperature. The clinic will call us if there is anything abnormal with the blood cultures.
He has been asleep pretty much since we got home.

The plan for his treatment over the next month is weekly lumbar punctures with Methotrexate (chemo) administered into the spinal space, and a daily oral chemo at home called Merpcaptopurine. He is off the steroid (Dexamethasone) for now which should help his appetite and mood return to more “normal”…although I’m not sure what normal is at this point for our little man.

Please continue to keep our Titus in your thoughts and prayers.

Medication List

Medication List

Here is Titus’ medication list. I will update this list with any changes as I get them. I have listed the more common side effects with each medication, however if you want to know more about the medications that Titus’ is receiving www.webmd.com is a decent site.

To find out more about Titus’ treatment plan, type in “treatment map” in the search bar on the website to find the Treatment Map post.

Non-Chemo Medications:

Bactrim:

• Antibiotic
• Given orally twice daily, three days per week
• Will take this med until 3-6 months after he is done with treatment.

Oxycodone:

• Pain Med – Given as needed after procedures etc.

Zofran:

• Given as needed for nausea/vomiting etc.

Senna:

• Given as needed to help with constipation – which many of his chemo drugs cause.

Zantac:

• Given with Dex and certain other meds which cause bad acid reflux.

Chemo Medications:

Vincristine:

• Destroys cancer cell’s by interfering with the cancer cell’s growth cycle
• Given via IV (port)
• Common side effects
  • Constipation
  • Stomach pain
  • Hair loss
  • Irritation of nerves, numbness and tingling of fingers and toes, muscle weakness

PEG- Asparaginase:

• Destroys cancer cells by interfering with the cancer cell’s growth cycle
• Given via IV (port)
• Common side effects
  • Loss of appetite
  • Allergic reaction

Dexamethasone:

• A hormone similar to hormones made in the body that may kill some cancer cells and increase the effectiveness of other anti-cancer medications
• Given by mouth
• Common side effects
  • Increased appetite, weight gain, and fluid retention
  • Full or round “moon” face
  • Stomach upset
  • Acne
  • Increased blood sugar
  • Irritability and mood/behavior changes
  • Less resistance to infection and longer time for healing

Methotrexate:

• Destroys cancer cells by interfering with the cancer cell’s growth cycle
• Given by mouth, IV (through his port) or spinal fluid (lumbar puncture)
• Common side effects
  • Mouth sores
  • Nausea, vomiting, loss of appetite

Cytarabine:

• Destroys cancer cell’s by interfering with the cancer cell’s growth cycle
• Given via IV or into the spinal fluid (lumbar puncture)
• Common side effects
  • Nausea, vomiting, loss of appetite
  • Diarrhea
  • Low blood counts
  • Mouth sores

6-Mercaptopurine:

• Interferes with the growth and spread of cancer cells
• Given orally
• Common side effects
  • Vomiting, mild diarrhea
  • Hair loss
  • Mild itching or skin rash

Doxorubicin:

• Interferes with the growth and spread of cancer cell’s in the body
• Given via IV (port)
• Common side effects
  • Lowered blood counts
  • Hair loss
  • Weakness/tiredness
  • Mild nausea

Thioguanine:

• Interferes with the growth and spread of cancer cell’s in the body
• Given via ?
• Common side effects
  • Vomiting
  • Hair loss
  • Rash/itching

Cyclophosphamide:

• Interferes with the growth of cancer cells and slows their growth and spread in the body.
• Given orally or IV (port)
• Common side effects
  • Nausea/vomiting/diarrhea
  • Mouth sores
  • Abdominal pain
  • Hair loss
  • Rash
  • Temporary or permanent sterility
  • Changes in skin color or nails

Titus' Port

This is a picture of what Titus’ port looks like under the skin. An hour before his clinic appointment, I put Lidocaine cream on the skin over the port to numb it. When he gets to clinic the first thing the nurse does is access his port. She/he inserts a needle (photo shows needle) into the port through the skin. He is such a big boy that he wants to sit by himself while the nurse accesses his port. He is so brave! They then draw labs and administer his chemo meds through the port. This port is quite the blessing because it means if/when he is admitted to the hospital, he won’t need to be poked multiple times for labs, IV’s etc.

First Fundraiser

Photo Above: The Winning Team, “Hot Pants” with their prizes: Summer Baskets for Eating Out

***Updated May 19th***

Titus Beeler’s First FUNdraiser at Centerline Volleyball was a great success! We had five teams come out for the Volleyball Tournament, and they played for four hours – it was a beautiful day, and Centerline was very accommodating. The Silent Auction and Raffles became quite competitive at times… all in good fun!

We are excited to say that we raised $2,055.00 for Titus and his family!!

That same weekend, Josh’s family over in Tennessee had a huge yard sale/fundraiser, and raised another $1,000.00.

Second Place, "Virginia's Volleyballers" - Boy did they play hard!

We couldn’t do this without you: Your support and prayers continue to encourage us as we make this journey, together.

Read more about the Home Makeover under the tab: ”How You Can Help”

Thank you to everyone who participated in the First Fundraiser!

Stay tuned for our next Event for Titus!

The Titus Team

The members of Titus’ Team are:

Mom and Dad, Lauren and Joshua Beeler

Sisters, Aubriana and Aurora

“Grandpa” Dale and “Grandma” Lisa Guthrie

“Papa Bear” Barry and “Nina” Joy Beeler

Aunt Crystal and Cousin Eli Beeler

Aunt Jen and Uncle Ben Johnston

Uncle Marshall Guthrie

Pam Hausner (This website would NOT have been possible without your internetual expertise!!)

Aunts Judy, Judy, and Linda (integral parts of the “Idea Gang”)