Update of Aurora

Well, I am now 30 weeks and a few days along…It seems like yesterday that we found out we were expecting again, what a blessed surprise that was! Starting in a week and a half, I will have to go in weekly for biophysicals for our little girl. These are similar to an ultrasound, but it is testing the baby’s “breathing”, heart rate, movement etc., and she has 30 minutes to pass, otherwise we will then have a non-stress test. The reason for these biophysicals is because I have a genetic defect called MTHFR.

• *”Methylenetetrahydrofolate reductase (MTHFR) is a rare genetic defect that can lead to complications in pregnancy. Methylenetetrahydrofolate reductase (MTHFR) is the name of a gene that produces an enzyme, also called methylenetetrahydrofolate reductase. If a person carries the genetic mutation that inhibits production of this enzyme, it can result in hyperhomocytenemia, which is an elevated level of an enzyme called homocysteine found in blood plasma. When the body is deficient in methylenetetrahydrofolate reductase, its ability to absorb folate (also known as vitamin B9), such as folic acid, is inhibited. Folic acid and B9 are both essential to the development and health of the fetus.Because of a mother with MTHFR’s inability to efficiently metabolize folic acid and vitamin B9, the disorder has been linked to a variety of pregnancy complications.
• Because MTHFR is a blood-based disease with many varieties, symptoms vary depending on the exact mutation of the disease. They can include: blood clot, depression, anxiety”

*Information gathered from various sites.

I have been taking folic acid daily, daily lovenox injections to help prevent blood clots, as well as a weekly progesterone injection to help keep my uterus “calm”. With all of the different meds and precautions being taken because of past pregnancy complications, this pregnancy has been very calm and without complication. We are so thankful and blessed! Our little girl has a few more weeks before we get to snuggle her, and we can’t wait. Titus and Aubri give her hugs daily and are excited to “play” with their new baby sister.

Aubri's Surgery

Aubri had tubes placed when she was a year old because she had constant ear infections. Her doctor went through every type of antibiotic and each time we finished one, her ears would flair up again. Tubes ended up being our only choice. Now, the ear tubes do eventually fall out, and Aubri had both of hers fall out when she was about three years old, and her left eardrum never closed up as is should have. The hole in her eardrum caused her pain when she would get water in her ears, as well as hearing loss.

Aubriana had surgery to repair her eardrum on Tuesday (April 24, 2012). Everything went smoothly during surgery. She had a rough time in recovery, was in some pain, but is doing so much better today!

Her surgery this Tuesday involved using a skin graft obtained just inside her ear, and placing it over the hole of the eardrum. We are praying that it closes the hole successfully, although her doctor did say this type of surgery had a 90% success rate. Praying she is one of the 90%!

Counts - What they mean

****UPDATED April 27, 2012

I’ve mentioned posting more information on Titus’ blood counts and what it means if a certain one gets too low. So here you go…

Many anti-cancer medications will affect the bone marrow and temporarily stop the making of red blood cells, white blood cells (neutrophils, monocytes, etc.) and platelets. This may cause anemia (low hemoglobin/red blood cells), and increased risk of infection (low white blood cells) and bleeding (low platelets). There are many blood tests that our Doctors perform each week to watch his blood counts.

• Hemoglobin (HGB) or Red Blood Cells: Normal is around 11 or 12 for Titus, less than 8 would generally require a blood transfusion.
• White Blood Cells (WBC): Fight infection – When low he is more likely to get sick from bacterial and viral infections.
• Neutrophils (ANC): these are a type of white blood cells that are very important in fighting bacterial infections. When Titus’ absolute neutrophil count (ANC) is low, less than 500, it is called neutropenia. He would be admitted to the hospital for antibiotics if he were to get a fever of 101.5 or higher during this time. His scheduled chemo will most likely be altered if his ANC is below 700. He is to be kept away from sick individuals at all times, however, the lower his ANC gets, the more precautions must be taken.
• Platelets (PLT): these clot the blood. When low, Titus is more likely to bruise easily, or have bleeding problems. If platelets get lower than 20,000, he will generally receive a transfusion.

Hemoglobin (HGB):

• Normal = 11/12
• Low (need transfusion) <8

Neutrophils (ANC):

• Normal >1500
• Mild neutropenia 1000-1500
• Moderate neutropenia 500-1000
• Severe neutropenia <500

Platelets (PLT):

• Normal >150,000
• Restrict Activity <50,000
• PLT transfusion <20,000

White Blood Cells (WBC):

• Normal range is about 4,500 – 11,000

As of April 20, 2012 his counts are:

• HGB = 8.4
• PLT = 299,000
• ANC = 730
• WBC = 2,180

As of April 27th, 2012 his counts are:

• HGB = 8.7
• PLT = 262,000
• ANC = 2730
• WBC = 4,400

Laura Story - Blessings

I heard this song the first time two weeks before Titus’ diagnosis and it really hit home with me then, now even more so. We have been through, and are going through a lot, but through everything, we have not been alone, and keep feeling God’s blessings in our life. No matter how hard or how unbearable things seem, we are NOT alone. If you haven’t heard the song, I recommend you youtube it, RIGHT NOW.

Blessings – by Laura Story

We pray for blessings, We pray for peace, Comfort for family, Protection while we sleep, We pray for healing, For prosperity, We pray for Your mighty hand to ease our suffering, All the while, You hear each spoken need, Yet love is way too much to give us lesser things

Cause what if Your blessings come through raindrops, What if Your healing comes through tears, What if a thousand sleepless nights are what it takes to know You’re near, What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear, We cry in anger when we cannot feel You near, We doubt Your goodness, We doubt Your love, As if every promise from Your Word is not enough, All the while, You hear each desperate plea, And long that we’d have faith to believe

When friends betray us, When darkness seems to win, We know that pain reminds this heart, That this is not our home

What if my greatest disappointments, Or the aching of this life, Is the revealing of a greater thirst this world can’t satisfy, What if trials of this life, The rain, The storms, The hardest nights, Are Your mercies in disguise

Lumbar punctures, eardrums, and zombies, oh my!

*****UPDATED with photo from Friday, April the 13th at the clinic. He was still loopy from his sedation and munching on goldfish graham crackers. He may not look happy in this picture, but he was being rather goofy!

These last two weeks have gone well for Titus. He is getting strength back in his legs, although he isn’t running yet, he does speed walk around the house daily. He is still wobbly when he bends over/gets up off the floor, and needs a hand going up stairs. He is focused on playing more and not napping during the day anymore, unless mommy says its nap time.

The clinic appointments the last two weeks have gone pretty smoothly. His blood counts are staying within a decent range (I will post an informative post on his blood counts soon as a reference), and he is such a good patient. His doctor and nurses compliment him every week, saying how they wish all their patients were as awesome as Titus. Not to say he doesn’t get nervous when his port is accessed, or when he knows the Doc is about to do the lumbar puncture, but even with the nerves, he is so brave! He takes his at home meds like a champ, we are so proud of him! He has another lumbar puncture with intrathecal Methotrexate next Friday, then he gets somewhat of a little break from them. (If I ever mention a med or procedure that you have a question about, remember to check out my posts “treatment map” and “medication list” for more explanation).

Titus’ favorite things to do right now is play with his legos, making lego guns to go along with his toy guns. He saves us daily from zombie invasions ;). He received a “bag of fun” from a wonderful organization last week, and got his own Nintendo DS with it. He is becoming a video gamer like his daddy! And I actually don’t mind! He also got some cool crafts that we’ve been working on, along with a number of other toys. This organization makes sure that every child with a new cancer diagnosis receives a “bag of fun” filled with fun things to do during treatments etc, they are pretty wonderful.

As for the eardrums (from the title of the post) this is in regards to Titus’ sister Aubri! She had tubes placed in her ears when she was a year old, due to horrible ear infections. They have since fallen out, and her left ear didn’t heal properly leaving a small hole in the eardrum. She has a 20-30 decibel hearing loss in her left ear because of this, and will be having outpatient surgery April the 24th to patch the hole. The Doc told us she should be back to her old self the next day, and the surgery should correct any hearing loss, so we are praying that will be the case! She has been such a wonderful help and playmate for her brother and has had such a great attitude so far with everything. Please pray that her surgery goes smoothly!

We will be wishing Titus’ grandpa a happy birthday this weekend, and enjoying a visit from my aunt! I hope that all of our readers/prayer warriors have a wonderful weekend with family and friends. Thank you so much for your continued prayers! We love you!

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”)