One Year...

It has officially been one year off treatment for Titus.
He is playing baseball and loving being a rough and tumble boy for the first time since diagnosis.
Titus will be starting 3rd grade in the fall and is excelling in school. He has had minimal issues with illness since treatment ended - the biggest being an endless string of ear infections.

I haven't posted an update in almost a year and it is mainly because - life continues. Thank you to everyone who has followed our son's story through his treatment for leukemia. Titus' health is never far from our minds - however we choose to live without fear - some days are harder than others - but we will continue to enjoy our family and not let the fear of the "what ifs" take away from that.

Off treatment

Is this what being off treatment feels like? I am beyond grateful that my son is the fighter that he is, and that he is as brave and resilient as he is. After over three years of cancer treatment, he is done. He had his last dose of chemo on May 14th and his port removed on July 8th. He just had his second set of follow up lab work post treatment and his numbers just keep getting better.
His next visit is in two months. This is both scary and exhilarating to me. Scary in the fact that for the longest time he was going in every week for labs and treatment - then we moved to monthly. He has gone monthly for labs, and treatment every 3 months, for over 2 years. Now the thought of going two months without knowing what his body is doing is a little hard to think about. But I have faith, and HOPE that he will continue thriving.

We had a fun end of treatment party the end of June for him - this was eye opening for me in many ways. One - I can't talk about my son and what he, and we, have been through without crying. I don't know if it will ever be something that will not elicit tears. And two, we have been, and are, surrounded by a multitude of loving and supportive family and friends. These people have prayed for our son, helped support us, and stayed by our side no matter what.

One week from tomorrow, Titus will be entering second grade. When he was first diagnosed before his 4th birthday, it was hard to imagine ever being done or even making it through treatment. But he made it, he is healthy, happy, and the bravest kid I know.
He is in remission, has been for awhile now, but the fact that I can say that, and he is no longer being treated, is feels different. I feel like I can breathe a little easier. I honestly do not know what his future looks like, but I pray that it is long, and full, and that no matter what is put in his path, he will have his family and friends to support him.

My favorite verse for many reasons is 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 your wherever you go".

No matter what our future holds - this I know - we will never need to go it alone.

Less than a year to go

It is official, we are in the last leg of this journey. Titus has less than a year left of treatment, it is a very weird feeling. May 2015 (or close to that) he will be done. This brings a sense of excitement, along with trepidation. I remember when he was diagnosed, the feeling of treatment taking an eternity, it has gone by quicker than I thought it would. He is 6, officially a first grader. He is smart, funny, brave, adorable. He doesn't let much bother him. I am so proud to call him my son, so proud to be by his side and hope he understands one day how brave he has been, and continues to be.

He had a lumbar puncture and IV chemo infusion yesterday, he has this every 12 weeks. Looks like he will have about 4 more (not 100% sure) before the end of treatment. His counts were great. His hemoglobin is above 11, his platelets 140,000 (really good for him) and his ANC (absolute neutrophils, part of white blood cell count/immune system) was 2040 (needs to stay between 700-1500). He had the IV chemo infusion given, and then he was sedated and had the LP and chemo administered into the spinal space during it.

In April his counts bottomed out and he was put on a chemo hold for three weeks. His hemoglobin hung out around 6-7, his platelets were below 50,000, and ANC eventually bottomed out just under 300. Once his counts bounced back during the chemo hold, his home chemo was restarted at a lowered dose. He has been on that lowered dose for about 5 weeks now, and just had it raised a little bit yesterday. With his ANC being above 1500, we will be monitoring his counts and trying to get the chemo to the right dosage again to get his ANC in the desired range. The goal is to keep his immune system suppressed, this is how they measure how well the chemo is working.

He is tired and grumpy today, thanks to the IV chemo and the steroid pulse he is on (that partners with the IV chemo). Thankful that the steroids are only for 5 days. We go back the beginning of July for labs - hoping we have a uneventful three weeks until then!

Just when you think life is predictable again...

Well, this past year of Titus' treatment has gone smoothly. April of 2013 he had to have his port replaced, ever since he has been fairly healthy; no ER visits, and counts have been more or less stable.
For all of this we are extremely thankful.
At his last routine visit for treatment back in March, his counts were great. A month later, his hemoglobin and platelets and eventually his ANC dropped, the lowest we have seen his hemoglobin drop since intense treatment. His Dr. believes that Titus' marrow is more sensitive to his chemo than the "normal" (whatever that means), his platelets and hemoglobin have always run a bit lower, but never at a concerning level during maintenance. We are now beginning our second week of him being on a chemo hold and as of Wednesday, his counts were slowly beginning to rebound. We go in and have labs checked again this coming Wednesday, and will begin chemo again at a lower dose.
Dr. isn't wanting to hold his chemo any longer if we can help it. At this point, the goal of his daily and weekly home chemo doses is to not only destroy any remaining cancer cells, but to also keep his marrow suppressed enough that it won't create more. The longer he isn't receiving his meds, the higher the risk for relapse at this point - so while his body needs this break, it is slightly nerve wracking.
At last check his hemoglobin was 6.9, up from 6.7, and platelets were 47,000, down slightly from 51,000 the previous week. He has been acting as if everything were fine, not overly tired, although he is bruising more than his usual.
At this point we are praying for his body to recover enough this week so we can restart his meds, and would appreciate your prayers as well!

Welcome

Titus participated in a clinical study - documenting how quickly his body metabolizes his oral chemo in pill form, and then the next day in liquid form. The end result hopefully being making the liquid form available nationwide for kids who have trouble swallowing pills. He had his blood drawn over a dozen times each day, and got to play all day - we had a fun two days!

Titus received his "Beaded Journey" beads (not complete until treatment ends). Having something that he can look at and hold and count is very neat. Each bead stands for something that he has had to do, or had done to him during his treatment. Each poke, each chemo, each test.

Welcome to Titus' new blog - I hope you will continue to follow his journey through Facebook as well at "Titus Beeler's Healing Journey".

Alot of time has passed since our last blog update. Titus passed his two year mark since his diagnosis on March 1st. He is going to be six soon! He is reading, doing math problems, being a wonderful student and big/little brother. He has had his routine treatments every 12 weeks, the last one being last week on the 12th. He received methotrexate via a needle into his spinal space (lumbar puncture = LP), he also received vincristine through his port in his chest, both of these are chemotherapy drugs. He also began his 5 days steroid pulse that day, thankfully he finished that up before spring break this week! Titus went to school Thursday and Friday after his procedure. He was pale and worn out from chemo, and a little grumpy from his steroids, but made it through with a smile on his face. For the record, he isn't made to attend school, I rigorously question him about how he is feeling and if he feels like staying in bed, and his teacher and I chat off and on. He called me Thursday afternoon and requested his pain medicine, but wanted to stay at school. Like I said, so brave!

If you search for the post labeled "Counts..." you can compare these if you want.
Titus' platelets were 72,000 on Wednesday the 12th, this number is lower than I've seen it in awhile (6-9 months) and is lower because his oral home chemo med was raised 25% at his visit in February due to his ANC being too high. This may get confusing...bare with me...His ANC (absolute neutrophil count) measures his immunity essentially (it is a part of the white blood count) and has to stay between 750 and 1500, this is how they measure if his oral chemo is at the correct dose to do what it is supposed to be doing...suppressing his immunity enough to hopefully prevent any more bad cells from being produced (as well as killing any remaining bad cells). His ANC had been above 1500 in January and February, so at February's visit his at home oral chemo dose was raised. At his visit last week, his ANC had risen even higher. This can be caused by a number of things, which is why his chemo isn't adjusted based on just one lab test. Next month's visit will determine if we raise the dose again. I am hoping his ANC goes down to the desired level and stays there. I'm also hoping that his platelets will hold steady despite the increase in his oral chemo last month. I will update after his next lab check next month.

Thank you for those of you who are still around and following Titus' journey, it means a lot knowing we have your prayers and support. Much love from the Beeler's!

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

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.