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.