October Volleyball FUNdraiser

***** A BIG THANK YOU to everyone who participated in our Fundraiser! Visit Titus’ facebook page “Titus Beeler’s Healing Journey” for pictures!

Titus’ family is continuing to experience needs both expected and unexpected, so come out and help support this deserving little boy and his family by playing in an exciting sand volleyball tournament!

When : Sunday October 21, 2012 from 1pm-5pm

Where : Centerline Beach Volleyball, 1910 SE US Hwy 40, Blue Springs, MO 64014

To play in the Tournament: Bring a 6-man/woman team, or let us match you with a team.

Cost is $20.00 per person.

Absolutely EVERY DOLLAR from the tournament goes towards Titus’ medical bills and to help keep Titus’ home a safe place.

Feel free to come out and support your friends even if you don’t want to play!

Kids of all ages are welcome – Food is available for purchase on-location!

If you have any questions, please leave it in the Contact section. Thank you, and we hope to see you there!

Moving Along

Since my last post Titus has spent 2 days in the hospital and begun Interim Maintenance #2.

Monday August 27th Titus complained about his mouth hurting around 5pm, by 7pm he had a temp of 102 which meant we were headed to Children’s Mercy ER. Since his ANC was still only in the 200′s, his fever got him admitted and put on IV antibiotics for two days. We are not sure but it looked as if he was getting an abcess in his mouth. He was discharged that Wednesday with his ANC almost at 500, and by Friday his ANC was high enough to begin his next round of treatment on Tuesday, September 4th.

Titus began the last round of his weekly treatments, also known as Interim Maintenance #2. Like I’ve posted previously, this consists of two lumbar punctures with intrathecal Methotrexate (first day and 32nd day) as well as IV Vincristine and Methotrexate every 10 days (approx).

Beginning sometime the end of October we will begin Longterm Maintenance (LTM) for the next 2.5 to 3 years. This will include home chemo pills daily (6-MP), lumbar punctures with Methotrexate every 3 months, IV Vincristine, and 5 days of the steroid from hell every month. Now, since Titus is participating in a study, he may be randomly selected to have the Vincristine treatment every 12 weeks, instead of every 4, but we won’t know that until we begin LTM. They are trying to determine if treating with Vincristine every 12 weeks will have the same effect but without as many side effects, I am praying that he will be put where he needs to be.

Titus’ head is getting fuzzy again with new hair growing! He’s very excited about that

We are enjoying our little family and so very grateful for all that we have been given. Thankful that through all of our trials, we have never been alone. Thankful that Titus has done so well and continues to do well.

Please continue to keep him in your thoughts and prayers…Specifically that we can keep our family healthy through the winter and that he will continue to have minimal side effects.

Recovery...And then we begin again...

Some of this is repeating my last post…I apologize for the repetitiveness.Titus finished his delayed intensification on August 16th, the 16th being the last day he received chemo this month. Since that point his blood counts have gone up and down and he has needed three transfusions this month. He has had some days where he was not very active and putting himself to sleep and he has had days where he played nonstop like a little boy should. He has almost two more weeks until he begins his next two months of treatment. He will have lab work again this coming Friday, the 31st. Hopefully all of his counts will be trending up and he won’t need yet another transfusion. Sept. 7th, as long on his ANC is above 750, he will begin the next two months with Intrathecal Methotrexate (meds given via lumbar puncture), and IV Vincristine and IV Methotrexate. On one hand I pray that his body will recover quickly so he can continue his treatment on time, on the other hand I want more time for him to recover… All in God’s timing.

Literally for the last four months Titus has not left our home unless it is to go to the doctor, grandma’s, or run errands in the car. I can’t express how happy I am that we have been able to keep him infection free with is immune system being as shot as it is. It is amazing how much of a germaphobe I have become. People are gross! No offense I was standing in line at the drugstore one day, and a little girl and her mom were waiting behind me. The little girl started coughing this nasty cough, I literally about had a panic attack, I came home and changed my clothes and prayed that I hadn’t brought her nasty germs home. With Aubri back in school as of last week, I am praying HARD that she doesn’t bring anything dangerous (for him) home.

With him being “stuck” at home, I am really looking forward to getting our basement finished, and then the kids bedrooms moved around and done. Titus’ current bedroom is literally the size of a walk in closet. I assume when this house was built maybe it was an office, but I don’t think the square footage qualifies it as a “bedroom” lol. It worked when it was a nursery, and will be one again for Aurora, sooner than later I hope! She is growing fast and won’t fit in the bassinet much longer! Once the basement is done though, Titus will get Aubri’s room, which is a good sized room, where he will have a place to put all of his toys! He will have more space to play, room to play with toys on the floor and still have room to move around! Check out the home makeover section to see what else we need, maybe you know someone who knows someone that can help with carpet, or tile, or painting, etc. Anyway, enough for tonight. Please continue to lift my little boy in prayer as we continue on this journey.

August 10th counts:

• WBC: 1000
• HGB: 7.7 – received a blood transfusion
• ANC: 500 – severe neutropenia
• PLT: 81,000

August 17th Counts

• WBC: 1200
• HGB: 9.1
• ANC: 560 – Moderate neutropenia
• PLT: 11,000 – Platelet transfusion

August 24th Counts

• WBC: 970
• HGB: 6.9 – Blood transfusion
• ANC: 130 – severe neutropenia
• PLT: 32,000

Reminder of normal/abnormal counts:

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

School and Other Things

The beginning of a new school year is upon us! Aubriana begins her second grade year on Monday and is so excited! I am excited for her and can’t believe how OLD she is! She soaks up her school work and seems to truly love it. She is also the best helper a mom could ask for and such a wonderful big sister.

Aurora is almost 9 weeks old already! She weighs more than 12 pounds already, she seems to be packing on the pounds, maybe this means it’s going to be a cold long winter???

I am set to return to my studies a week from Tuesday. It has been nice and much needed to have a break from school, but I am hoping that I can transition back into it smoothly! I have 7 more classes to complete in order to graduate! If all goes smoothly between now and then I will be done the week after my 30th birthday…um, lets not go there yet!

This Sunday, August the 19th, marks our sweet Joshua Jr.’s second birthday. Our lives will forever be touched by his and although he was on this earth for such a short time, he left a large and lasting impression. We love you and will miss you baby, until we meet again!

Life is quite the journey. With so many ups and downs, twists and turns, sometimes giving up seems like the best option. I am so grateful for the family and friends in my life who have lent me strength when I needed it to keep going. You know who you are.

Delayed Intensification - Complete!

Well, we now have two weeks “off” of chemo, Titus has completed the delayed intensification phase of his treatment, yay! His ANC has stayed just above 500 over the last three weeks which is good, not great but good. He needed a blood transfusion last Friday (his hemoglobin was 7.7, normal is above 11), and today he received a platelet transfusion (his platelets were 11,000, transfusions are given after it is under 20,000). Starting September the 7th he will begin the next phase, which includes 2 lumbar punctures, then methotrexate and vincristine every 10 days. This phase lasts 2 months and then we begin long term maintenance, which is the monthly visits and lasts about 2.5 years. Time has been flying over the last 5.5 months, days running into weeks, weeks running into months…He has made it this far without any serious illnesses and with minimal side effects. I believe that all of your prayers have had something to do with that! Thank you to all of you who have been faithfully lifting him, and the rest of our family in your prayers.

Titus will be evaluated by a physical therapist in a few weeks for leg and ankle weakness that has been caused by a couple of his chemo’s. Even with that, he is a busy little guy and besides his cute baldish head, you would never know he was sick. It is amazing how little leukemia has done to slow him down, and for that I am so grateful. As a mom, his disease is never far from my mind, but when I see him being silly with his sister, it does so much to ease the worry.

Please don’t forget Titus as he has a long road ahead of him, one that will never truly end. With many possible lasting effects from chemo, and the chance of coming out of remission always in the air, I am praying for his future now as much as his present.

Welcoming Aurora

Well, all of you know that we have welcomed our new addition! Meet Aurora Marie Beeler. She was born on Sunday, June 17th, 2012 at 8:10 in the evening. She weighed in at 7 pounds 3 ounces, and measured 18.5 inches long. It was love at first sight! There were no complications and labor and delivery all went very smoothly. We chose her name, Aurora, because we fell in love with it! Her middle name Marie is in tribute to my grandmother and Josh’s grandmother who both share the name Mary. The last 6 weeks have gone by so quickly and she is growing way too fast if you ask me. Aubriana and Titus are proving to be amazing caretakers of their sister. They make sure they get to hold her daily and any time she cries they rush to her and sing to her and talk to her hoping to calm her down. Being a mother of three under one roof has taken some juggling and getting used to, but I have been blessed with amazing children and can not imagine life without them!

Aubriana is starting second grade in just a few short weeks. This summer has gone by so fast, I am not ready to send her back to school! I will also be starting back to school after taking a much needed couple months off. I am hoping to complete my bachelors degree around May of 2013, baring any more time off.

I will continue this update under Titus Healing News area as the rest is about him. Thank you to everyone who has blessed my family and I with your thoughts, prayers, time, and gifts. You are greatly appreciated and will not be forgotten.

The Cookie Man

You see the sweet little boy in the picture above? That is Titus, my hero, bringing cookies to his doctor and his nurses this last Friday (thank you Grandma Lisa for finding the perfect distractions and giving him something fun to do and think about while at clinic!). Since my last update on Titus we have experienced some new highs and lows.The highest was the birth of Titus’ little sister, Aurora Marie! She fits her name now that she is over a month old: always asleep,except when she’s hungry!

The more recent lows have been Titus’ latest month of treatment. This included the steroid from hell, Dexamethasone. While the steroid works alongside his chemo, and is technically chemo itself, fighting off cancer cells…it also wreaks havoc on Titus’ emotions and appetite. He is miserable while on it, and is a completely different child. Thankfully he finished this segment over a week ago and is finally returning to his old self, except for the bloating that will continue to go down over time. Titus also finally began losing his hair a couple of weeks ago. It had been thinning for awhile, but recently it literally started falling out in chunks, so he got a buzz - he is almost completely bald.

The hair loss caused his scalp to be sensitive at first, so he began to wear a winter cap because his “hair hurt” as he put it. I have to say, he is pretty darn cute walking around the house in a ski cap while it is over 100 degrees outside!

Titus has just finished the first half of Delayed Intensification 2, and will begin the second half this Friday if his ANC is above 750. He was scheduled to begin last Friday, but his ANC was only 320, up from 290 the previous Friday. (Read my posts Counts, Treatment Map, and Medication List, for additional info.) So this Friday, if his ANC is up, Titus will have another lumbar puncture with intrathecal Methotrexate. He will also receive a chemo called Cytoxan, which is given over 30 minutes to an hour via his port. He will get IV fluids for 3 hours before and 4 hours after (if I remember correctly), because this drug can cause irritation and bleeding of the kidneys and bladder if it is not flushed out quickly. He will also start a chemo that he gets via his port at clinic, and then as a shot at home for the following 3 days, as well as a chemo by mouth.

My son is being bombarded by chemotherapy, literal poison, pumping through his veins, killing necessary cells along with the cancer cells. While he needs chemo in order to kill the cancer cells, the chemo is so destructive and scary. He is currently severely neutropenic, meaning his immune system couldn’t fight off the smallest bug. A bug/germ that would give you or I the sniffles for a few days could potentially kill my son. I pray constantly for protection for him because I know that while we are doing all we can to protect him from germs and treat his cancer, it is ultimately out of our control. If I wasn’t a believer, I guarantee I would have worried myself to death by now.

Now to answer the question that everyone asks: “How are you? How is Titus?”

Truthfully?

My son has cancer. There really isn’t any other way to answer that. Unless you have been where I am, there is no way to explain “how we are”. What I can say is this: thank you to those who pray unceasingly for him and us; Thank you to those who have given of their time and resources to assist and bless my family; And please, keep praying for my son. He has so much life to live, and I am going to do everything in my power to see that he does just that.