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