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.”