Symptoms of concern with Titus

Hello everyone, I have been asked, as well as others in my family, what did I/we notice with Titus that lead to us taking him to the Dr, and then the hospital.

Like I posted very early on, Titus started showing the symptoms, fever, bone (thigh) pain, tiredness, and loss of appetite, at the very beginning of February. All of us got a stomach bug that first weekend, and Titus took a little longer to recover than the rest. He then began exhibiting the highlighted symptoms, and it lasted for about 4 days. He wasn’t interested in eating, or doing anything but lying in bed, and was complaining of his legs hurting. He also had a low grade fever. Because of Aubri always bringing home bugs from school, I assumed that he had maybe a combo of some bug and growing pains.

In the middle of February, after a day out with daddy, he woke up the next morning with leg pain again, didn’t want to do anything but sleep, and was not interested in eating. He also ended up getting a fever during this time. This second bout of symptoms lasted about 4 or 5 days again. I took him to his doctor this time because I was getting worried that he had a bladder infection (which I had read can cause thigh pain if left untreated) and of course fever. According to his doctor he was fine, urine test and flu test came back negative, and there was really nothing else our Dr. could do.

The third time these symptoms reared their ugly head, was after Aubri’s birthday party Saturday the 25th of February. He woke up Sunday complaining of his legs hurting, again only wanting to lay in bed, not wanting to eat, and the fever came and went again. I called the Dr. on Monday and since his Dr. wasn’t in, didn’t take him in. I assumed maybe growing pains? Josh and I were however starting to get very concerned. He just wasn’t himself, but we didn’t know how to proceed. By Tuesday evening, he still was having fevers, and I just couldn’t shake a dread that I was missing something.

I literally could not sleep Tuesday night, and began googling (BAD idea by the way) and the first thing that popped up from the symptoms I was searching was leukemia…I just had this gut feeling that we really were missing something here…And began fearing and imagining the worst. Little did I know huh?

Well, on Wednesday, February 29th, Leap day, we took Aubri to school as normal; I called the doctor again and waited for a return call. What I got finally was the nurse saying the doc wanted us to go to the ER for blood work and xrays to try and figure something out. So that is what we did. The rest is (very recent) history as you know.

From the research done and from what his Oncology Doc’s have told us, the leg pain is from the buildup of blasts/leukemic cells in his bone marrow, causing a lot of pressure, and the more active he was, the more his legs would hurt. The fevers were either brought on by a rouge infection, or the leukemia itself.

Now, I hope this has answered some questions more thoroughly.

What this whole process so far has taught me, is not to ignore my gut, not every little fever, or cough, or pain is something to rush to the ER over, but you know your child, you know what is normal for them, what isn’t. Titus has always been an extremely active, happy, fun loving guy, and the way he was behaving we knew something was wrong.

Leukemia is not what we were expecting, but we are blessed that he was diagnosed and moved intro treatment so quickly.

The symptoms that Titus exhibited were not even visibly pointing to Leukemia. We are extremely blessed that the ER Doctor took the extra step to see that something was just a little off in his blood work, and that the hospital Doctors didn’t stop looking until they found the issue.

Visit this website for more information of childhood ALL/Acute Lymphoblastic Leukemia.

The symptoms listed on this website are symptoms that are associated with ALL, however there are many other illnesses/diseases with these same symptoms. I have bolded Titus’ symptoms.

• Fever.
• Easy bruising or bleeding.
• Petechiae (flat, pinpoint, dark-red spots under the skin caused by bleeding).
• Bone or joint pain.
• Painless lumps in the neck, underarm, stomach, or groin.
• Pain or feeling of fullness below the ribs.
• Weakness, feeling tired, or looking pale.
• Loss of appetite.

Appetite and such

Hello friends and family,

This last week has been an interesting week for us. The steroid that Titus is on, dexamethasone, is creating some issues in our house. According to the drug information given by our doctor, this drug may kill some cancer cells, and increases the effectiveness of other anti-cancer meds.

He takes it twice each day, and it has some interesting side effects. The most noticeable being weight gain, increased appetite, and changes in his behavior.

From the moment Titus gets out of bed in the morning he is planning out his meals. He is like me, a pregnant woman, with his cravings, its pretty crazy. Everything revolves around FOOD, and how long it will be till his next meal.

Although I am tickled that he is eating, before treatment he wasn’t eating well…This is his world right now. FOOD. If you were to ask him his favorite foods right now, it would be pizza, macaroni and cheese, noodles and sauce (pasta/tomato sauce), hamburgers, hotdogs and don’t forget COW MILK…This may seem not a big deal to you reading this, but my son is normally the kid who is eating fruits and veggies all day, vanilla flavored almond milk (no cows milk)
and maybe a little meat here and there…It is a fight getting him to eat healthy right now! And he wants all these things from the moment he wakes up, pizza, black olives, for breakfast!

He has gained weight, just like the med info sheet said was normal…his face has more than filled out, and he has a pot belly…and it’s only been 13 days since he’s started his meds!

He has to be reminded about having a good attitude and happy heart throughout the day, which is also thanks to this steroid. He is very quiet and moody (also like his pregnant mama).

Other than his crazy cravings, mood, and weight gain, he is quite the trooper. He has another round of chemo tomorrow afternoon, then again Friday the 23rd. Then on Friday the 30th he will have another bone marrow aspiration/biopsy to see what kind of response he is having. There is a good possibility that they will visibly see no leukemic cells by that point, which means he is responding well. After the 30th, we will continue going in for weekly treatments for the next 7 months, and as I’ve said before, after those 7 months, monthly treatments for about 2.5 years.

Please continue to pray that he will continue to respond well to the chemo and other meds that he is on, and that we can keep him healthy as his immune system continues to decline.

After each treatment, his white blood cell count is going to continue to drop. The meds that he is on have an accumulative effect, and so over time his immune system will be less and less. There will be times in his treatment where we will literally be quarantined for his sake.

For those who live close by, we welcome, and LOVE visitors, however as a rule, his doctor does not want him around anyone who has had a fever, cough, runny nose, or any type of viral/bacterial sickness symptoms, within the last 24 hours. So, if you are, or have been sick within the last 24 hours, stay home! And hand washing is a must. Our hands are falling off from so much hand washing

We have had so many individuals, friends, and family offer us so much support and prayer already, we are overwhelmed with gratitude. The love everyone is showing our family, especially Titus, has been what is keeping us going right now. It is going to take us awhile to accept that this is our new normal for now…but I think we are on our way, with your help. We love you!

Thank you for reading and for praying for our little man. This journey will not be without bumps and rough patches, but with your prayers and support, and God on our side, we can, and will, make it!

Monday

Well, we have had a good week. Titus had his first clinic visit which involved another spinal tap with chemo, as well as a second type of chemo given through his port.

The spinal fluid from when he was in the hospital, all came back clear of leukemic cells, praise the Lord! This means they will still be treating his cerebral/spinal fluid/space, but will not have to be more aggressive.

Also, the bone marrow biopsy came back clear of any genetic markers indicating a bad response to treatment, also wonderful news.

Titus has been tired and clingy, playing a little here and there, overall doing a little better than before starting treatment.

Thank you for your continued prayers,
Love, the Beelers

Monday - Home

After receiving a blood transfusion early Monday morning, Titus also received a chemo infusion. He tolerated both very well. After keeping him a couple hours after the chemo infusion, we were sent home!

Titus was very excited to get home and see his sister especially. He is asleep in his own bed, and thanks to my sister and her friend, his room is clean and germ free. He currently has no pain in his legs and is his old self when his sister is around.

Our plan this week is to try and get our routine back, with some changes. We have 5-7 daily medications that he now has to take which is not fun for him, poor guy.

Friday begins our weekly clinic visits for chemo that will continue for the next 7 month approximately. After those 7 months, Titus will have two and a half years of monthly treatments. It is hard seeing that far ahead, but we will get there eventually.

The main prayer request now is that he will not have any adverse reactions from his treatments…and that we can keep him healthy as his immune system is going to be extremely compromised.

It Begins

Wednesday evening at Children’s Mercy Kansas City…

Titus was admitted to Children’s Mercy in the late afternoon on Wednesday the 29th of February. We saw the pediatricians immediately upon admission and it was decided that he was to have an MRI Thursday, along with more blood work.

We had a restless night to say the least, not knowing what to expect, or what they would find.

Thursday….

Titus was NPO all day until his MRI in the afternoon…While waiting in radiology with Titus, the Hematology/Oncology Dr. came and spoke with me. He said that a certain blood test showed a blast cell, which is an immature cell, and many times signals leukemia. We were then told that after his MRI the Hem/Onc Doctor was going to perform a bone marrow aspirate/biopsy. This was more than unexpected and was the first realization that this was more than we realized.

Thursday afternoon….20-30 minutes after Titus was back in his room after the procedures.

The Hem/Onc doctors showed up at our room, and took my mom and I (Josh hadn’t arrived yet) to a conference room. The Dr. immediately said they found something unexpected, that he had leukemia. They were still unsure at to the certain type, but upon very first look of the aspirate under the microscope, it was clear what they were seeing.

It was told to us that Titus was to have a spinal tap Friday to determine if his cerebral fluid had any leukemic cells hiding out, along with his first dose of chemo placed directly into the cerebral fluid. Along with this procedure was was to have a port placed in his chest in order to have easy access to give his chemo treatments, draw blood etc.

Friday…

Josh and I spoke with our team of Doctors early Friday afternoon, we were told that Titus has Pre B ALL (Acute Lymphoblastic Leukemia). This type of leukemia requires approximately 3 years of treatment.

His port was placed under general anesthesia, and the spinal tap and chemo was done. According to first look at the spinal fluid, there were no red or white blood cells seen, which would be the first sign of leukemia cells being there. We are still waiting for the final word though. Whether or not there are leukemic cells in his cerebral fluid, he will receive routine chemo treatments there, however if there is no leukemic cells present, the treatment won’t be as aggressive, and more preventative. He also had his first round of chemo given through his port in his chest Friday evening. He has had no adverse reactions, or any reaction that I can tell from it.

Saturday…

Because the chemotherapy kills off leukemic cells fast, there is a chance of Titus to have Tumorlysis syndrome (TLS), which is “a group of metabolic complications that can occur after treatment of cancer. These complications are caused by the break-down products of dying cancer cells and include hyperkalemia, hyperphosphatemia, hyperuricemia and hyperuricosuria, hypocalcemia, and consequent acute uric acid nephropathy andacute renal failure.” (copy and pasted from google)

Because of this he is having very routine blood work done along with medication to help keep the uric acid down.

Sunday….
Titus is more his sweet happy self today. All of his blood work is looking very good, and his doctors said he looks like a different little boy today. With the chemo treatments, they said that his demeanor can change very quickly. His poor little legs had so many leukemic cells, that the pressure from them is what was causing his leg pain. He has not complained about leg pain since late Friday night. Although we have a happy boy right now, we are looking at a long road with
many ups and downs.

Monday…
The plan for tomorrow is to have another dose of chemo, a different med than Friday, and hopefully get more results back from the spinal tap. Depending on his reaction to this chemo, how he looks, if he continues with no fever, and his blood work looks good, he may be able to go home Monday or Tuesday.