Thankfulness

Happy late Thanksgiving everyone!

I have seen everyone expressing their thankfulness for their family, for their friends, for items that make their lives easier. I thought it was time to express my thankfulness.

First, I want to thank everyone who has donated their time and monies to my family for Titus. We have been so blessed by the outpouring of support from people near and far, we cannot even put into words how thankful we are.

Second, I want to thank my family who has spent so much of their time going to clinic with us, helping in the basement, and being there at a moments notice when we needed you. And for family who live farther away, thank you for your support and ever present love and prayers.

Third, I am thankful for chemo! I read a story the other day about George and Barbara Bush and how they lost their 3 year old little girl Robin to acute lymphoblastic leukemia only 7 months after her diagnosis. This was 60 years ago. They took her to the doctor, with the same symptoms that Titus had at diagnosis, and were told there was nothing to be done and that she would be gone in 2 weeks. Needless to say they didn’t give up and with some treatment got 7 more months with her. This was like a blow to the chest. 2 weeks? If we were living 60 years ago my son would be gone by now. I am so thankful that research and medicine have come so far that my son is 8 months into treatment with such a good outlook. It breaks my heart that so many little ones lost their lives to get to this point, but I am thankful for them, for their lives, for parents like the Bush’s who helped to further cancer research so that my son, and so many others have a better chance today.

Fourth, I am thankful that a year and a half ago we thought Josh had kidney stones only to discover it wasn’t stones, it was kidney cancer. I am thankful for the symptoms that sent us to the hospital or he may not be here with me today. Thankful that our bodies are so good at telling us when something is not right.

Fifth, I am thankful for Titus’ doctor and nurses and social worker who take such good care of all of us.

And finally, I am thankful for my children, those on this earth and in heaven. I have learned something new and grown as a person with each one and am so blessed to be their mama. Our house would be quiet and clean without Aubri, Titus, and Aurora, but where is the fun in that? They fill our house with laughter and legos. I am so thankful for their love and look forward to watching them grow up, but not too fast!

Titus goes in next Friday, November the 30th, for lab work and I’m nervous. Praying that his counts are good, and that his ANC is around 1000 which is the approximate goal (normal being above 1500) which is a good sign that his chemo meds that we do at home are a good dosage level.

I hope we see many of you at our Christmas Gala a week from tomorrow!

Lots of Love and Thankfulness from the Beeler’s

Looking Forward

During the last year and a half our family has been hit with two cancer diagnosis, both Titus and his daddy. You could say that this has been hard on our family and you would be right. No one expects to hear that word, however you would be surprised by just how many people around you are dealing it. When we got the news that Josh had kidney cancer my heart sank and although I imagined the worst (which is hard not to do), I didn’t crumple and give up. The same when we heard that our sweet little guy had leukemia. You can’t just curl up in the corner when you get news like this. You have to fight, and fight hard! Cancer is a beast of this world that seeks to destroy families and take lives. It is a disease that affects many, with treatment that leaves the body reeling, leaving the individual extremely vulnerable. But it is a disease that has to be fought.

A sweet girl by the name of Destiny lost her fight with brain cancer this week. It is not always a battle that can be won here on earth, but that doesn’t mean we should just give up and let it win, no way! God did not make us just to see us give up. He wants us to stand up and put our faith in HIM and NOT GIVE UP.

As a mom my biggest fear is losing my child to to this disease, but because of my faith I know for a fact that this world is not all there is and I find comfort in that. I just want Titus to be 100% healed, to not worry about relapse or secondary cancers, for him to be a strong healthy boy! But I know that things don’t always work out how I want them to. I was listening to the radio this week and they were talking about “blooming where you are planted” and about not waiting around for the next thing to come along, but to live TODAY. This is my goal, to not just wait for him to be better, for everything to get better…but to live today.

We have been, and continue to be blessed by so many, I hope and pray that one day I am able to make a difference for these kids and their families as the road we are on is not an easy one; physically, emotionally, financially, it is hard. Please remember to pray for those little ones who are fighting so hard, little boys like Cooper who is fighting wilm’s tumor and Gabriel who is fighting leukemia, and little girls like Destiny. And please don’t forget Titus.

Christmas Gala

Titus Beeler’s Healing Journey

Christmas Gala

Hosted by the Guthries’ Annual Christmas Party

December 2, 2012, 5:00pm to 9:00pm – That’s today!

The Vox Theatre: 1405 Southwest Boulevard, Kansas City, KS 66103

This is a FREE, family friendly (and FUNdraising) event, so bring your children – Please be prepared to watch your own, as there is no babysitter at this event.

Delicious food, family entertainment, and creative opportunities to support Titus and his family. Come join the party in your holiday duds and enjoy an evening out with your family!

Jessica Thomas Lee with ‘Scott E. Thomas & Daughter Photography’ will be taking family portraits with proceeds going to Titus!

Crafts and itemswill be for sale or raffle by Titus’ family and friends, proceeds (you guessed it!) going to Titus! Just a few of the items include:

Shabby-Chic refurbished furniture by Tassie Keshlear and Family

Hand-thrown mugs by Grandpa Dale

Hand-sewn Christmas Stockings by Grandma Lisa And Aunt Jean

Crafts by Aunt Jen

A French-menu cooking class in Eureka Springs by Cuisine Karen

… and much more! Don’t miss this wonderful opportunity to visit with family and friends, and support Titus as well!

Trust and Steroids, with a side of PIZZA

My son is a completely different little boy on steroids…I’m sure most people are. While some kids I’ve heard, get hyper and out of control, he gets quiet and moody…and is always starving! It is amazing how quickly we can see the effects, two doses and Titus as we know him, is gone. It is always a test of patience for us and we have to remind ourselves that he is not himself, literally. His favorite food (unless it changes in the night) while on steroids is pizza. Pizza for breakfast…literally anytime he can get it. I say, if it makes him and his tummy happy, let him have it!

I was reminded by my mother the other day how trusting Titus is and the fact that his calmness about the doctor, about all of this, is because he trusts me, his dad, his doctor. I’ve always tried my best to explain everything to him (as much as a four year old understands) about what is going on, why he has to get chemo, why he has to take yucky medicine. It has become the only way he can cope. If I don’t explain but just try to push medicine in his mouth he cries and throws a fit, but if I remind him that “no, this is not the yucky medicine, and you have to take it so this OTHER medicine won’t make your tummy hurt” he sits back and takes it quietly and without a fight (sometimes there is some whimpering involved…).

Yesterday before leaving for chemotherapy, Titus was telling his sister that he doesn’t like going to his doctor, but that he was brave and went anyway. As his mom, it is my job to be brave, but I tend to fake bravery quite often. I believe that God has a plan, and that He has been working on that plan for quite awhile. Maybe it is to use Titus to reach others during this trial in our lives, maybe it is to strengthen our faith, maybe it is to strengthen the faith of others. Whatever the reason, I will continue to be brave for my son and help him along this journey of sickness and healing, because if HE can be brave, so can I!

Treatment Map

Treatment Map

*** UPDATED November 1, 2012

I am listing Titus’ general treatment plan. Before each treatment change, I will to update how often he receives each medication and if there are any changes being made to his treatment plan.

To find out more about Titus’ medications listed here, type in “Medication List” in the websites search bar to locate the Medication post.

Induction : 1 month – completed Friday March 30^th, 2012

• Medications
  • Vincristine – given once weekly via port
  • PEG-Asparaginase – given once via port
  • Dexamethasone – twice daily via oral
  • Cytarabine – given once via Lumbar Puncture
  • Methotrexate – given 3 times via Lumbar Puncture

Consolidation : 1 month – Starting April 6, 2012 – Ending May 3, 2012

• Medications
  • Vincristine – given once via port
  • 6-Mercaptopurine – given once daily via oral
  • Methotrexate – given once weekly via Lumbar Puncture

Interim Maintenance #1 : 2 months Starting May 4, 2012 – Ended June 28, 2012

• Medications
  • Vincristine - given via port every 10 days
  • Methotrexate – given via port every 10 days
  • Methotrexate – Lumbar Puncture on Day 31

Delayed Intensification : 2 months Beginning June 28, 2012 – Second month began August 3rd, 2012.

• Medications
  • Vincristine – given via port 3 times during first month
  • PEG-Asparaginase – given via port once during first month
  • Dexamethasone – given orally for 14 days during first month
  • Thioguanine – tablet taken orally at home for first 14 days of second month
  • Cyclophosphamide also called Cytoxan – Given via port one time August 3rd, 2012
  • Methotrexate – given via Lumbar Puncture June 28th, and August 3rd
  • Cytarabine – Given via port August 3rd and August 10th, and given at home via injection 4th, 5th, 6th, and 11th, 12th, 13th.

Interim Maintenance #2 : 2 months Ended October 19, 2012

• Medications
  • Vincristine – given via port every 10 days
  • Methotrexate – given via port every 10 days
  • Methotrexate – via Lumbar Puncture

Maintenance : Begin November 2, 2012 – Ending in May 2015 (approx)

• Medications
  • **Vincristine – via port once every 12 weeks
  • **Dexamethasone – given orally for 5 days every 12 weeks
  • Methotrexate – given orally at home once a week
  • 6-Mercaptopurine – given orally at home DAILY
  • Methotrexate – given via Lumbar Puncture once every 12 weeks

**Titus is participating in a clinical study – These two medications are being given a third less often (standard treatment being once every 4 weeks instead of every 12). The study is to determine if they can get same cure rates/results from less chemo, ultimately minimizing the side effects. The effects from these two chemo meds are not pretty. We are praying that the little we are doing in this study will help benefit kids in the future.

Long-term Maintenance

11 is the number of times that my son has been under sedation and received chemo into his spine. 26 is the number of times my son has had his port accessed. 34 more times he will have his port accessed until end of treatment (approx). 12 more times he will receive chemo IV and in his spine until the end of treatment. Approx. 924 times he will take chemo at home until end of treatment.

May 2015 (as long as all goes smoothly) is when Titus treatment should end. I have spent the last hour figuring out how many times he’s been poked, and how many more we have to go. 924 more days (approx). I hope and pray it isn’t more than that, and that we have a healthy 7 year old boy when it is all over. He will be 7 years old when he finishes treatment, I can’t imagine my little guy at 7!

He was randomized yesterday in the clinical trail that he is participating in. To read about the clinical trial that Titus is apart of visit this website. He is in “Arm C” and is Average Risk.

http://www.clinicaltrials.gov/ct2/show/NCT01190930?term=AALL+0932&rank=1

We begin Long Term Maintenance tomorrow, November 2, 2012 with a lumbar puncture with methotrexate, vincristine IV, dexamethasone for 5 days (the steroid from hell), and 6-MP. He will have labs every four weeks now, instead of weekly, and I am going to miss our weekly assurance that he is still in remission. However scary this is, and believe me, I am scared, and will always be scared for my son, I am trusting that God will continue to provide healing and take care of our Titus.

In the last month I have been reminded by different individuals how blessed we are that Titus has the “easy” or “most treat-able” form of leukemia. His cure rate is 90-95%. However much I realize how “blessed” we are to have the “easy” cancer, it does not negate the fact that my son has cancer. He is not guaranteed to survive this. On top of that, the chemo that is helping to “cure” him, puts him at high risk for developing secondary cancers later in life. He is at risk for liver and kidney problems from chemo treatments. Possible cognitive and learning delays due to the chemo, especially the intrathecal chemo.

My thoughts: everyone’s cancer journey is different, some longer, some shorter, some more intense than others. Some have wonderful outcomes, some kids have lifelong issues due to treatment, some kids don’t make it through. Any chance, no matter how small, to lose your child to this disease is too much. I don’t wish it on anyone, it is a complete game changer, a complete heart breaker. Cancer is cancer.

Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Where has the time gone...

It has been seven and a half months since Titus’ diagnosis. It seems like it was just yesterday some days, and others like it’s been forever. November the second he will begin “Long-term Maintenance” (LTM). Because he is in a clinical trial I am not sure yet what his protocol will be for treatment. I do know that he will receive lumbar punctures (with intrathecal methotrexate) every three months and will have oral methotrexate once a week at home, as well as oral 6-MP every day (yes…every day for the next 2-3 years). However, the chemo infusion of vincristine with which he also will have oral steroids for five days after is up in the air. On the clinical trial he will be randomly placed to either have vincristine and steroids once every 4 weeks, or once every 12 weeks. The goal of the trial is to determine if the decreased amount of vincristine will function the same but with obviously less side effects (it causes neuropathy, foot drop, and leg weakness to mention a few). I am praying that Titus will be placed in the group that is best for him.

The idea of beginning long-term maintenance is liberating, not having to go to clinic every week seems wonderful…but then I think, his counts will only be checked monthly now…that scares me. The oral chemo he will be on at home will need to be monitored and the dose regulated to make sure his ANC stays at a consistant level, not too low, not too high to ensure the 6-MP is working properly. This may take awhile to regulate the dose, we shall see, praying that his ANC will not bottom out because of a too high dose. Praying for a lot of things right now…

His hair is growing back, he’s got the cutest fuzz on it now. He has done great during this last phase of treatment. He has his last treatment on Wednesday (the 17th) before starting LTM and his chemo gets increased again, hoping we can make it another treatment without bad side effects.

I am in awe of my son and his bravery through all that he has been through. We were talking today about how the doctors put his port in his chest. You can feel it, along with the catheter along his collarbone, and he was touching it asking how they got it there. He is a little boy who has to know what is going on. I think it helps him cope with the situation if he knows. He has to watch when they access his port for example and is very particular these days at clinic. He has to eat a tic tac when the nurse saline flushes his port because it tastes icky, and he also likes the tubing taped up so it doesn’t hang out from under his shirt. He is very good at reminding his nurses, I love how he has taken control of these little things. He is growing up in front of my eyes, 5 months and he will be 5 years old, I am not ready! He is also very particular at home especially at bedtime. He asks me every night if I remember what he wants me to do, how could I forget! “Mommy, tuck me in, turn off my light, close my closet door, leave my bedroom door open just a little”…I hope he doesn’t forget what he wants me to do for a long time. <3 my little man.

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.

From Grandma Lisa

I want to thank all of you who have been involved with us in this journey. I have never prayed so much in my life! As I share our story, you have told me some of your needs as well. I want you to know that Dale and I pray for you too. We are in this together, this journey of life…full of surprises, some exciting, some scary, but always together.

Can I share a thought? It has to do with coming to Jesus as a little child. As an adult, we worry about tomorrow, we fill our minds with concerns for yesterday and today. We think of all we have to loose, and what we are missing out on… As I watch Titus, I realize he does not have many worries. He knows his mommy and daddy love him and are taking care of him. He goes to the doctor because we tell him to. He chooses a prize, finds out how big he is, then gets a “drink” in his tubie. He talks about being brave. Sometimes he is a bit afraid, but he does what he has to do, trusting all of us to take care of him. Can we come to Jesus like that? Can we trust Him, fully? Jesus knows what we need, and he will take care of us. That is the bottom line. I pray we can all be more like Titus, a little child who is loved.

God bless you and those you love today! Lisa

Titus and Aurora update

Hello everyone! Sorry it has been so long since an update!

Yesterday Titus completed his Interim Maintenance #1 phase of treatment. He gets to have a two week break before he begins his next weekly treatment regimen in his Delayed Intensification on June 29th. This next phase introduces one new medication that he hasn’t received before. His doctor expects his counts to bottom out during this treatment phase, and for him to be the most vulnerable. I will update again once we begin delayed intensification with a better schedule for those who want to keep up with his treatments, as well as keep you informed as to how he is doing.

Delayed Intensification – 2 months Begins June 29th, 2012

• Medications
  • Vincristine – given via port
  • PEG-Asparaginase – given via port
  • Dexamethasone – given orally – on 7 days, off 7 days etc.
  • Doxorubicin – IV
  • Thioguanine
  • Cyclophosphamide
  • Cytarabine
  • Methotrexate – given via Lumbar Puncture

As for now, Titus is doing wonderfully and tolerating and responding to his treatments as well as can be expected. His doctor and nurses are so impressed with our little guy every time they see him. He usually has a great attitude, and even when he doesn’t, he is very cooperative and will give them a smile. Thank you to our Hem/Onc team!

As for our little lady Aurora, she will join us tomorrow! I am being induced at some point tomorrow afternoon (Sunday, June 17th, 2012). We are so ready to meet her and welcome her to our little family.

Please pray for Titus as he nears his next phase of treatment that God would continue to use his doctor and these medications to heal our little guy. Also please lift our family up in prayer as we add another member! Pray that Aurora arrives safely, and that the transition from 4 to 5 is smooth for Aubriana and Titus (AND mommy and daddy).

3 Month "Diagnosis-versary"

Three months ago we were receiving some of the most devastating news of our lives. It is amazing how knowledge and time can make that news easier to bear. Three months ago we didn’t know what to expect, or if we would ever feel like a “normal” family again. There is something about the diagnosis of cancer that forever changes what is normal: We are still the same people, we love the same, however, we might think slightly differently from you. We can’t just go out as a family without thinking about all of the germs we may encounter – we make our outing decisions based on other people’s germs. We go to the doctor weekly with Titus for treatment, part of our new normal. We try to treat him the same as we did before, and what we consider being disobedient before diagnosis is still the same after diagnosis. We try to have fun and play, but I always have my eyes on him making sure he isn’t playing too rough.

We cry more than we used to. The feelings of “why our son” cross my mind, however I know that nothing we did made this happen, we can’t go back and change anything. We have to continue to trust that God is in control and keep moving forward. We have been showered with blessings and know that even through these trials and heartbreaks, we are never alone.

For those reading this, please continue to pray for our son who has a long treatment plan ahead of him. Please pray that we would be wise in our decision making and that God would use Titus’ doctors and medicines to heal him from this scary disease.

It's Friday!

It’s Friday, and I think it is time for an update! Aubriana is out of school this coming Tuesday and I am very excited that it’s almost summertime! Last weekend we had some very successful fundraisers (volleyball tournament with silent auction, and garage sale). Thank you to everyone who donated!

Titus’ treatments are going well as he’s entered into his Interim Maintenance #1 portion of his treatment plan. He receives IV Vincristine and IV Methotrexate every @10 days for two months (a total of 5 treatments). He will also receive LP Methotrexate on his 4th treatment day along with the two IV chemo’s. So far the side effects have been limited to some nausea and a decreased appetite. The IV Methotrexate causes nausea/vomiting and mouth sores, and the Vincristine causes limb weakness; each med lowers his blood counts somewhat as well. Each treatment, the IV Methotrexate dose is increased, so we ask for continued prayer that the side effects would stay minor.

Aubri is doing well since her surgery and will hopefully get a full release from her doctor this coming Wednesday. Titus’ next treatment is scheduled for a week from today. Everything with baby Aurora couldn’t be going any smoother right now, thank the Lord!

Thank you to everyone for their continued prayers and support!

Titus’ Counts from Tuesday May 15th

• HGB = 9.1
• Platelet = 262,000
• ANC = 940
• WBC = 3,040

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”)

Symptoms of concern with Titus

Hello everyone, I have been asked, as well as others in my family, what did I/we notice with Titus that lead to us taking him to the Dr, and then the hospital.

Like I posted very early on, Titus started showing the symptoms, fever, bone (thigh) pain, tiredness, and loss of appetite, at the very beginning of February. All of us got a stomach bug that first weekend, and Titus took a little longer to recover than the rest. He then began exhibiting the highlighted symptoms, and it lasted for about 4 days. He wasn’t interested in eating, or doing anything but lying in bed, and was complaining of his legs hurting. He also had a low grade fever. Because of Aubri always bringing home bugs from school, I assumed that he had maybe a combo of some bug and growing pains.

In the middle of February, after a day out with daddy, he woke up the next morning with leg pain again, didn’t want to do anything but sleep, and was not interested in eating. He also ended up getting a fever during this time. This second bout of symptoms lasted about 4 or 5 days again. I took him to his doctor this time because I was getting worried that he had a bladder infection (which I had read can cause thigh pain if left untreated) and of course fever. According to his doctor he was fine, urine test and flu test came back negative, and there was really nothing else our Dr. could do.

The third time these symptoms reared their ugly head, was after Aubri’s birthday party Saturday the 25th of February. He woke up Sunday complaining of his legs hurting, again only wanting to lay in bed, not wanting to eat, and the fever came and went again. I called the Dr. on Monday and since his Dr. wasn’t in, didn’t take him in. I assumed maybe growing pains? Josh and I were however starting to get very concerned. He just wasn’t himself, but we didn’t know how to proceed. By Tuesday evening, he still was having fevers, and I just couldn’t shake a dread that I was missing something.

I literally could not sleep Tuesday night, and began googling (BAD idea by the way) and the first thing that popped up from the symptoms I was searching was leukemia…I just had this gut feeling that we really were missing something here…And began fearing and imagining the worst. Little did I know huh?

Well, on Wednesday, February 29th, Leap day, we took Aubri to school as normal; I called the doctor again and waited for a return call. What I got finally was the nurse saying the doc wanted us to go to the ER for blood work and xrays to try and figure something out. So that is what we did. The rest is (very recent) history as you know.

From the research done and from what his Oncology Doc’s have told us, the leg pain is from the buildup of blasts/leukemic cells in his bone marrow, causing a lot of pressure, and the more active he was, the more his legs would hurt. The fevers were either brought on by a rouge infection, or the leukemia itself.

Now, I hope this has answered some questions more thoroughly.

What this whole process so far has taught me, is not to ignore my gut, not every little fever, or cough, or pain is something to rush to the ER over, but you know your child, you know what is normal for them, what isn’t. Titus has always been an extremely active, happy, fun loving guy, and the way he was behaving we knew something was wrong.

Leukemia is not what we were expecting, but we are blessed that he was diagnosed and moved intro treatment so quickly.

The symptoms that Titus exhibited were not even visibly pointing to Leukemia. We are extremely blessed that the ER Doctor took the extra step to see that something was just a little off in his blood work, and that the hospital Doctors didn’t stop looking until they found the issue.

Visit this website for more information of childhood ALL/Acute Lymphoblastic Leukemia.

The symptoms listed on this website are symptoms that are associated with ALL, however there are many other illnesses/diseases with these same symptoms. I have bolded Titus’ symptoms.

• Fever.
• Easy bruising or bleeding.
• Petechiae (flat, pinpoint, dark-red spots under the skin caused by bleeding).
• Bone or joint pain.
• Painless lumps in the neck, underarm, stomach, or groin.
• Pain or feeling of fullness below the ribs.
• Weakness, feeling tired, or looking pale.
• Loss of appetite.

Appetite and such

Hello friends and family,

This last week has been an interesting week for us. The steroid that Titus is on, dexamethasone, is creating some issues in our house. According to the drug information given by our doctor, this drug may kill some cancer cells, and increases the effectiveness of other anti-cancer meds.

He takes it twice each day, and it has some interesting side effects. The most noticeable being weight gain, increased appetite, and changes in his behavior.

From the moment Titus gets out of bed in the morning he is planning out his meals. He is like me, a pregnant woman, with his cravings, its pretty crazy. Everything revolves around FOOD, and how long it will be till his next meal.

Although I am tickled that he is eating, before treatment he wasn’t eating well…This is his world right now. FOOD. If you were to ask him his favorite foods right now, it would be pizza, macaroni and cheese, noodles and sauce (pasta/tomato sauce), hamburgers, hotdogs and don’t forget COW MILK…This may seem not a big deal to you reading this, but my son is normally the kid who is eating fruits and veggies all day, vanilla flavored almond milk (no cows milk)
and maybe a little meat here and there…It is a fight getting him to eat healthy right now! And he wants all these things from the moment he wakes up, pizza, black olives, for breakfast!

He has gained weight, just like the med info sheet said was normal…his face has more than filled out, and he has a pot belly…and it’s only been 13 days since he’s started his meds!

He has to be reminded about having a good attitude and happy heart throughout the day, which is also thanks to this steroid. He is very quiet and moody (also like his pregnant mama).

Other than his crazy cravings, mood, and weight gain, he is quite the trooper. He has another round of chemo tomorrow afternoon, then again Friday the 23rd. Then on Friday the 30th he will have another bone marrow aspiration/biopsy to see what kind of response he is having. There is a good possibility that they will visibly see no leukemic cells by that point, which means he is responding well. After the 30th, we will continue going in for weekly treatments for the next 7 months, and as I’ve said before, after those 7 months, monthly treatments for about 2.5 years.

Please continue to pray that he will continue to respond well to the chemo and other meds that he is on, and that we can keep him healthy as his immune system continues to decline.

After each treatment, his white blood cell count is going to continue to drop. The meds that he is on have an accumulative effect, and so over time his immune system will be less and less. There will be times in his treatment where we will literally be quarantined for his sake.

For those who live close by, we welcome, and LOVE visitors, however as a rule, his doctor does not want him around anyone who has had a fever, cough, runny nose, or any type of viral/bacterial sickness symptoms, within the last 24 hours. So, if you are, or have been sick within the last 24 hours, stay home! And hand washing is a must. Our hands are falling off from so much hand washing

We have had so many individuals, friends, and family offer us so much support and prayer already, we are overwhelmed with gratitude. The love everyone is showing our family, especially Titus, has been what is keeping us going right now. It is going to take us awhile to accept that this is our new normal for now…but I think we are on our way, with your help. We love you!

Thank you for reading and for praying for our little man. This journey will not be without bumps and rough patches, but with your prayers and support, and God on our side, we can, and will, make it!

Monday

Well, we have had a good week. Titus had his first clinic visit which involved another spinal tap with chemo, as well as a second type of chemo given through his port.

The spinal fluid from when he was in the hospital, all came back clear of leukemic cells, praise the Lord! This means they will still be treating his cerebral/spinal fluid/space, but will not have to be more aggressive.

Also, the bone marrow biopsy came back clear of any genetic markers indicating a bad response to treatment, also wonderful news.

Titus has been tired and clingy, playing a little here and there, overall doing a little better than before starting treatment.

Thank you for your continued prayers,
Love, the Beelers

Monday - Home

After receiving a blood transfusion early Monday morning, Titus also received a chemo infusion. He tolerated both very well. After keeping him a couple hours after the chemo infusion, we were sent home!

Titus was very excited to get home and see his sister especially. He is asleep in his own bed, and thanks to my sister and her friend, his room is clean and germ free. He currently has no pain in his legs and is his old self when his sister is around.

Our plan this week is to try and get our routine back, with some changes. We have 5-7 daily medications that he now has to take which is not fun for him, poor guy.

Friday begins our weekly clinic visits for chemo that will continue for the next 7 month approximately. After those 7 months, Titus will have two and a half years of monthly treatments. It is hard seeing that far ahead, but we will get there eventually.

The main prayer request now is that he will not have any adverse reactions from his treatments…and that we can keep him healthy as his immune system is going to be extremely compromised.

It Begins

Wednesday evening at Children’s Mercy Kansas City…

Titus was admitted to Children’s Mercy in the late afternoon on Wednesday the 29th of February. We saw the pediatricians immediately upon admission and it was decided that he was to have an MRI Thursday, along with more blood work.

We had a restless night to say the least, not knowing what to expect, or what they would find.

Thursday….

Titus was NPO all day until his MRI in the afternoon…While waiting in radiology with Titus, the Hematology/Oncology Dr. came and spoke with me. He said that a certain blood test showed a blast cell, which is an immature cell, and many times signals leukemia. We were then told that after his MRI the Hem/Onc Doctor was going to perform a bone marrow aspirate/biopsy. This was more than unexpected and was the first realization that this was more than we realized.

Thursday afternoon….20-30 minutes after Titus was back in his room after the procedures.

The Hem/Onc doctors showed up at our room, and took my mom and I (Josh hadn’t arrived yet) to a conference room. The Dr. immediately said they found something unexpected, that he had leukemia. They were still unsure at to the certain type, but upon very first look of the aspirate under the microscope, it was clear what they were seeing.

It was told to us that Titus was to have a spinal tap Friday to determine if his cerebral fluid had any leukemic cells hiding out, along with his first dose of chemo placed directly into the cerebral fluid. Along with this procedure was was to have a port placed in his chest in order to have easy access to give his chemo treatments, draw blood etc.

Friday…

Josh and I spoke with our team of Doctors early Friday afternoon, we were told that Titus has Pre B ALL (Acute Lymphoblastic Leukemia). This type of leukemia requires approximately 3 years of treatment.

His port was placed under general anesthesia, and the spinal tap and chemo was done. According to first look at the spinal fluid, there were no red or white blood cells seen, which would be the first sign of leukemia cells being there. We are still waiting for the final word though. Whether or not there are leukemic cells in his cerebral fluid, he will receive routine chemo treatments there, however if there is no leukemic cells present, the treatment won’t be as aggressive, and more preventative. He also had his first round of chemo given through his port in his chest Friday evening. He has had no adverse reactions, or any reaction that I can tell from it.

Saturday…

Because the chemotherapy kills off leukemic cells fast, there is a chance of Titus to have Tumorlysis syndrome (TLS), which is “a group of metabolic complications that can occur after treatment of cancer. These complications are caused by the break-down products of dying cancer cells and include hyperkalemia, hyperphosphatemia, hyperuricemia and hyperuricosuria, hypocalcemia, and consequent acute uric acid nephropathy andacute renal failure.” (copy and pasted from google)

Because of this he is having very routine blood work done along with medication to help keep the uric acid down.

Sunday….
Titus is more his sweet happy self today. All of his blood work is looking very good, and his doctors said he looks like a different little boy today. With the chemo treatments, they said that his demeanor can change very quickly. His poor little legs had so many leukemic cells, that the pressure from them is what was causing his leg pain. He has not complained about leg pain since late Friday night. Although we have a happy boy right now, we are looking at a long road with
many ups and downs.

Monday…
The plan for tomorrow is to have another dose of chemo, a different med than Friday, and hopefully get more results back from the spinal tap. Depending on his reaction to this chemo, how he looks, if he continues with no fever, and his blood work looks good, he may be able to go home Monday or Tuesday.