Kindergarten - Light the Night!

Hello everyone!

Titus is almost a full month into kindergarten and is doing wonderfully! He is enjoying school and comes home with great reports each day. A year and a half ago I couldn’t imagine him being able to attend school. The day he was diagnosed with leukemia the doc told us that he should be able to attend school once the time came, I am so glad that he is able to! We sent home a letter to his classmates/parents informing them of his diagnosis and requesting that we be informed if their child becomes sick with a serious illness. So far Titus has been healthy, besides a little runny nose. Keep praying as we start to enter into the fall and winter months please! Because of his treatment, we didn’t spend time “getting him ready” for school, our focus was on his treatment. Because of this, I was worried as he entered school that he would be “behind”, I don’t know why I was so worried! This little guy is blowing us away!

So, I am sure everyone has seen somewhere that September is Pediatric Cancer Awareness month. In the 1950s, almost all kids diagnosed with cancer died. Because of research, today about 85% of kids with the most common type of cancer will live. But for many other types, progress has been limited, and for some kids there is still little hope for a cure. This is why we must continue to find new ways to treat cancer in kids. We have formed a small team and will be walking in the Light the Night walk with the Leukemia and Lymphoma Society September 20th. Here is a link if you would like to join us, or donate to our team! Our goal is $100.00. http://pages.lightthenight.org/mid/KSCity13/TitusBeatsALL#home - Check it out!

As many of you are aware, Titus is in remission. However, here is something you may not know. His oncologist described Titus’ remission as this… When Titus was diagnosed, he had billions of leukemia cells throughout his body. After his first month of treatment, his bone marrow showed .001% leukemia cells = meaning remission, however it also meant that he still had millions of leukemia cells throughout his body. The length of treatment is over 3 years, this is to ensure that all those cells are eliminated, and to keep his bone marrow suppressed enough to hopefully not produce anymore leukemia cells. He is taking multiple chemotherapy meds still, at home, by IV, and through lumbar puncture as well. This is all done in hopes that we will get all those bad cells. His immune system is suppressed through the meds he is taking, so while he is now free to attend school, and be a kid, we still have to be very careful with what he is exposed to. His immune system is 1/4 to 1/3 of what a “normal” child’s immune system should be. While we would like to keep him in a bubble…he needs to be free to be a kid! He was in a bubble long enough, and I hope and pray he doesn’t end up back in one! There is a chance that at some point his counts may bottom out while he is in maintenance just from the continuous chemo that he gets. We will cross that bridge if we come to it (if, not when).

I want to give a huge thank you to everyone who has been supportive during this journey. Whether it was your time and energy, monetary support, or prayers, we are forever grateful for you!

Make-A-Wish Trip

 

 

 

 

Wow…Where to begin! This whole process with Make-A-Wish has been a wonderful experience from beginning to our amazing trip. We had two amazingly sweet Wish Granters (Erin and Mel) and some amazing sponsors (Mr and Mrs Orem). Titus’ wish was to meet Goofy and to see the Wizarding World of Harry Potter. Both of these were accomplished and we all had such an amazing time in Orlando! We got to Give Kids the World on Monday June 3rd and headed home the following Sunday. We visited Islands of Adventure and Universal for two days, Magic Kingdom two days, and SeaWorld one day. I could go through and give you a play by play of each day, but I will just let you enjoy some pictures instead. Thanks to everyone who made this trip possible, and who made our stay amazing!

Home Makeover

******UPDATED April 20th*********

Well – the basement is complete. All three kids are in their own rooms, and mom and dad have a nice relaxing space of their own. This “home makeover” has been a project of love and from the beginning was meant as a blessing to the Beeler’s, it is just that – a huge blessing! With the stresses that we as a family have been through, it is so nice to have a comfortable, temperate controlled (THANK YOU UNITED) home to relax and spend time together in.

A Huge thank you goes out to everyone who has been involved in making this happen. From family, to friends, to the local businesses that donated services and products. From the Beeler family I would like to extend our heartfelt thanks to each and every one of you. We will get more photos posted from your viewing pleasure shortly!

Aubri and Titus in the basement

Wishes and Ports

While it has been awhile since I’ve update yet again, I have been thinking about what I’ve wanted to share for quite awhile – life has been going on.

A couple months before Christmas we contacted Make-A-Wish for Titus. He met with his wish granters (who are incredibly sweet and kind) at the beginning of this year and at first he wished for a bubble gun… They poked and prodded a little more and he told them he wanted to meet Goofy – ie: go to Disney. Needless to say, he, along with the rest of us, are going to Orlando this summer. It is rather surreal to think that our son has a life threatening illness that even qualifies him for this – it is bittersweet to say the least. Of course we are excited to be able to share something like this with him and our girls. On top of being blessed with a family vacation, we were informed a little over a month ago that his wish had been adopted by a local couple (which means his wish is being sponsored by a family – normally businesses would do this) We have had a chance to get to know them and it has been an overwhelming blessing. God has brought many people into our lives throughout this journey and we are constantly in awe of the goodness and kindness of others. I know I say it a lot, but thank you so much to everyone for supporting our son and us – we thank GOD for each and every one of you.

Moving on…

Titus was scheduled for his lumbar puncture this past Wednesday along with chemo and IV chemo as well as beginning his week of steroids. We got to clinic bright and early ready for a predictable day… At this point I don’t know why I even pretend to think of any of this as predictable! He was an angel as always when his port was accessed, only for it to not work. The nurse attempted to de-access and re-access his port hoping that maybe the needle was touching the port weird and causing it to get stuck… Unfortunately this did not work and we went through two hours of waiting around for a “clot buster” med to hopefully unclog the catheter along with going to radiology for a dye study to see what the issue was. Come to find out there is a nice clot at the very end of the catheter – while I was told this is not a danger to him because it is so small, it is not allowing any blood to be drawn out of the port. We went back into clinic yesterday and gave the “clot buster” meds two more hours, sitting there with fingers crossed hoping that it would work. It didn’t – so Titus had to have blood drawn out of his arm for labs – during which he was super brave! We will be scheduling a time within the next two weeks to replace his port. While this is very frustrating – there are worse things! He will have his lumbar puncture at that time as well so he isn’t sedated any more than he has to be.

So, let’s talk cancer. Did you know childhood cancers on average have a 5 year survival rate of 80%? (Some cancers survival rates are significantly less.) This means a child who is diagnosed has on average an 80% chance to still be alive 5 years later – but what about 6 years later? Did you know that 7 children will die each day from childhood cancer? There is a sweet boy named Silas who has fought for a year against liver cancer that is about to enter heavens gates at the age of 4. He is doing something amazing. Within the cancer mom/dad community there is a great big push to get childhood cancer on the forefront of peoples minds, trying to raise awareness which in turn leads to more funding for more research, which is what we need! Silas is getting people’s attention by the thousands. Visit Praying for Silas on Facebook to show your support and GO GOLD for childhood cancer awareness! Also, visit www.thetruth365.com and when you have time watch their video and find out what you can do to help spread awareness.

Alright, you’ve been updated. God bless you and thank you again for your prayers and support! We are forever grateful.

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