Tribute Video

Josh and I decided, for Titus’ 5th birthday, we wanted to share with you a picture journey of Titus’ life and his fight with leukemia. Thank you so much to everyone who has kept our little man in your thoughts and prayers. He has taught us so much about love and hope and faith as we fight alongside him. He is our hero – and as he runs through the house today playing army, he reminds me to live every day as the true blessed gift that it is! Thank you GOD for this amazing life YOU have blessed us with.

Click on the link to view our video – Or copy paste in your browser.

 

https://www.youtube.com/watch?v=OKhLr78065g&feature=player_embedded

March 1st = One Year Since Diagnosis

Where has the year gone is what I would like to know. I remember like it was yesterday: a year ago, finally settling in with Titus at Children’s Mercy, me, 20 weeks pregnant, snuggling my sweet boy to sleep in the hospital bed. He was so good, even then when it was all new and scary and ouchie, we didn’t know what tomorrow would bring and sure weren’t expecting what it did bring. When the doctors sat down with us after he had a bone marrow biopsy the evening of March 1st and said “we found something we weren’t expecting” we began this long fight. Through tears and heartache we learned the plan to save our boy’s life, and we started this journey, a journey no parent ever expects to begin.

Tomorrow is March 1st, I know it is just like any other day, however, it marks a year that we have made it through with Titus and his fight against leukemia. It marks a year of chemotherapy, a year of overcoming daily fears and struggles. This is a big deal to me. I don’t expect anyone else to really remember this date, I won’t hold it against you. But it will always strike a chord with me, make me remember my heartache and my son’s fighting spirit. Most days at certain points I am able to forget that my child is fighting cancer, until of course it is bedtime and chemo time. I pray that when Titus gets older he won’t have these fears that I have now, that he will be able to forget many of the yucky things he’s gone through and be a normal kid. But what is normal really… Right now his normal is walking around with a port in his chest, getting his “applesauce” medicine every night, tiring easily, being quarantined at times for fear of infection, being poked at least every month (thank goodness the weekly pokes are over for the most part), wearing a mask to keep out the germs, wearing hand sanitizer wherever he goes, mommy yelling to calm down and not to play too rough…Yes, this is normal for now; maybe someday we will have a different normal.

Many of you who read my updates are close family and friends – your support over this past year has meant more than you will know. At many times I have felt undeserving of your love and support, but thank you all the same for your support of my family and especially Titus. With your help my father was able to see his dream come to fruition of blessing our family with more space in our home. We are finally able to enjoy that extra space and it is truly a blessing. When things have gotten tight over this last year, we’ve trusted and prayed that God would continue to provide because HE knows what we need and He has done just that – through you all! While we have reached the year mark, we still have almost two and a half years to go – this isn’t a sprint, it is a marathon…and I am tired.

An update on Titus’ health: He has been sick off and on since right before Christmas. First it was a small cold/cough which turned into pneumonia the week after Christmas Then the week after new years he was admitted and tested positive for RSV. He went on a chemo hold for two weeks for low counts. He had his routine lumbar puncture rescheduled due to his nasty cough last month. Tomorrow he is scheduled for that lumbar puncture, however his cough is back so we will see what they say after his exam – we shall see what tomorrow holds ( I will post an update on his facebook page ‘Titus Beeler’s Healing Journey’).

Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Long Term Maintenance: Take 2

Tomorrow will be Titus’ second round of treatment in maintenance. If his counts cooperate he will start a 5 day pulse of steroids and receive Vincristine IV and Methotrexate via lumbar puncture. This is how I see things, I don’t pray that his counts will be high enough to receive his chemo. When he is count dependent for chemo I trust that his numbers will be right where they need to be. If his body needs more time to heal and recover his counts won’t be high enough, simple as that.

Onto other news, it looks like Josh and I will be moving to the basement by the first week of February! We are stoked to be able to allow everyone to stretch their legs again (so to speak). Thank you so much to everyone for helping make my dad’s vision to bless us come true. Dad, we love you!

I know this is much shorter than most of my posts, I promise to post more later! God bless you all and thank you for your continued prayers and support, it means the world to us.

Christmas with the Beelers

Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

This is my go to verse – I remember singing a song based on this verse when I was small, little did I know how big of an impact and how much peace it would bring to me now. It is hard to be strong and courageous all the time. Strength can be tiring! Who better to have in the driver seat of life than God! He is where I find my strength. Even on days where I feel like a failure and like our world is falling apart around us, God is with us. I spend a lot of time being afraid for Titus (for all my children) for his future, will he have a future? Fear is not healthy! Fear paralyzes you, makes living every day to the fullest impossible. Joshua 1:9 says to not be afraid! Whether you are facing a cancer diagnosis like Josh did, and like Titus is now, or something else, we must not let fear take control.

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Merry Christmas! (a little late) P.S. I need to update more often, sorry for the book you are about to read!

I want to say a huge thank you to everyone who participated in our Christmas Gala! So much fun was had by all and we are so blessed that you took the time to join us and support Titus and our family!

For Christmas this year we had planned to just stay in KC. However, Josh ended up being able to get vacation time and so we decided that we wanted to surprise Titus’ grandparents for Christmas (Josh’s parents). We began planning at the beginning of December our surprise We drove over two days to get to their home in East Tennessee where we then put Titus and his big sister Aubriana in a big box that was wrapped and waited for them to get home from lunch. Needless to say, they were very surprised! We enjoyed being able to spend Christmas with them and are so glad that God helped us get here through the help of family and friends and my sweet sister in law who was our accomplice! This trip was a nice vacation away from the stresses that are our norm. It gave us time to relax and snuggle with our kids and play and not worry about anything else, it was a true blessing.

We spent an afternoon the week of Christmas in the local East Tennessee Children’s hospital with Titus because he had spiked a fever. Because of his immune system being compromised this is the protocol for when his temp is above 101.5. His ANC was above 500 so he got IV fluids, and a dose of IV antibiotics – Xray showed a small infiltrate on his right upper lobe (small amount of pneumonia). He was put on antibiotics for the next week and sent home.The hospital staff were all very accommodating and helped to ease his fears while in an unfamiliar setting. While Titus is used to having his port accessed, it is stressful (the older and more aware he gets the harder it is). The nurses all mentioned how adorable he was and how calm and cooperative he was. The nurse that deaccessed his port says that he dreads doing it because the kids normally pitch a fit and hate it, but that Titus was the first little one that he’s seen be so calm about the whole thing. It makes me so proud when others see what I see in my son – A calm, trusting, loving spirit.

We left Tennessee Sunday, January 6th around lunchtime and got home that night/Monday morning around 1:30am. We came home to a wonderful surprise! Titus new bedroom (Aubri’s old room) Was painted with a wonderful Batman city-scape mural on the wall (complements of uncle Marshall with creative assistance from Grandma) Along with his room, the mudding and painting was completed in the basement! We are now very close to being able to move everyone around! Once we get flooring installed and the bathroom tiled, Josh and I will move downstairs and we are so excited! Because of this remodel, Titus is now able to have a large bedroom with plenty of play space all his own! His previous bedroom will then house his baby sister Aurora who is looking forward to finally sleeping in a nice comfy crib and not the small pack and play bassinet in my room that is almost too small! She is growing so fast! Aubriana will also have a nice more grown up space in Josh’s and my (old) room. I have to say a huge thank you to everyone who helped my family get our home more comfortable and a much safer place for Titus.

Well, after being home from our trip less than 24 hours, I had to take Titus to the ER because he had spiked a fever. While in the ER he got a chest xray which was clear! However, his ANC count was below 500 (330) which along with a fever is an automatic 48 hour stay. They drew blood cultures to look for a bacterial infection and did a viral panel – He was put on IV fluids and routine IV antibiotics. On Tuesday the viral panel came back positive for RSV, Yuck! For children Titus’ age, RSV normally leads to cold like symptoms, but it can be dangerous in babies, and yes, you guessed it, people with compromised immune systems like our sweet boy. Besides fevers and a nasty cough, he didn’t have any breathing or other issues which was a huge blessing. On Wednesday he received an IVIG infusion (this is a blood product, a protein found in the blood plasma which plays a role in the immune system, Titus’ was very low). Then because he was stable, his oncologist sent him home Wednesday evening. His platelet count was low at 38,000 and his hemoglobin was very low at 7.1, however he is not extremely symptomatic so his Onc wants to check his labs again this coming Wednesday. Titus’ Dr. would rather try to let his body recover on its own. Titus is currently on a chemotherapy hold because his ANC is below 750 – being on a chemo hold will hopefully also allow his hemoglobin and platelets to recover without being transfused.

Thank you to everyone who has been praying for Titus and the rest of us this week, and throughout everything! Please continue to pray that his body can recover quickly, and also for the rest of us who seem to be fighting sickness as well. I will update after his lab work on Wednesday, pray that his counts have improved enough to not need a transfusion!

**If you are unfamiliar with blood counts etc, read my previous blogs “blood counts” for a little more info

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!