From Grandma Lisa

I want to thank all of you who have been involved with us in this journey. I have never prayed so much in my life! As I share our story, you have told me some of your needs as well. I want you to know that Dale and I pray for you too. We are in this together, this journey of life…full of surprises, some exciting, some scary, but always together.

Can I share a thought? It has to do with coming to Jesus as a little child. As an adult, we worry about tomorrow, we fill our minds with concerns for yesterday and today. We think of all we have to loose, and what we are missing out on… As I watch Titus, I realize he does not have many worries. He knows his mommy and daddy love him and are taking care of him. He goes to the doctor because we tell him to. He chooses a prize, finds out how big he is, then gets a “drink” in his tubie. He talks about being brave. Sometimes he is a bit afraid, but he does what he has to do, trusting all of us to take care of him. Can we come to Jesus like that? Can we trust Him, fully? Jesus knows what we need, and he will take care of us. That is the bottom line. I pray we can all be more like Titus, a little child who is loved.

God bless you and those you love today! Lisa

Titus and Aurora update

Hello everyone! Sorry it has been so long since an update!

Yesterday Titus completed his Interim Maintenance #1 phase of treatment. He gets to have a two week break before he begins his next weekly treatment regimen in his Delayed Intensification on June 29th. This next phase introduces one new medication that he hasn’t received before. His doctor expects his counts to bottom out during this treatment phase, and for him to be the most vulnerable. I will update again once we begin delayed intensification with a better schedule for those who want to keep up with his treatments, as well as keep you informed as to how he is doing.

Delayed Intensification – 2 months Begins June 29th, 2012

• Medications
  • Vincristine – given via port
  • PEG-Asparaginase – given via port
  • Dexamethasone – given orally – on 7 days, off 7 days etc.
  • Doxorubicin – IV
  • Thioguanine
  • Cyclophosphamide
  • Cytarabine
  • Methotrexate – given via Lumbar Puncture

As for now, Titus is doing wonderfully and tolerating and responding to his treatments as well as can be expected. His doctor and nurses are so impressed with our little guy every time they see him. He usually has a great attitude, and even when he doesn’t, he is very cooperative and will give them a smile. Thank you to our Hem/Onc team!

As for our little lady Aurora, she will join us tomorrow! I am being induced at some point tomorrow afternoon (Sunday, June 17th, 2012). We are so ready to meet her and welcome her to our little family.

Please pray for Titus as he nears his next phase of treatment that God would continue to use his doctor and these medications to heal our little guy. Also please lift our family up in prayer as we add another member! Pray that Aurora arrives safely, and that the transition from 4 to 5 is smooth for Aubriana and Titus (AND mommy and daddy).

3 Month "Diagnosis-versary"

Three months ago we were receiving some of the most devastating news of our lives. It is amazing how knowledge and time can make that news easier to bear. Three months ago we didn’t know what to expect, or if we would ever feel like a “normal” family again. There is something about the diagnosis of cancer that forever changes what is normal: We are still the same people, we love the same, however, we might think slightly differently from you. We can’t just go out as a family without thinking about all of the germs we may encounter – we make our outing decisions based on other people’s germs. We go to the doctor weekly with Titus for treatment, part of our new normal. We try to treat him the same as we did before, and what we consider being disobedient before diagnosis is still the same after diagnosis. We try to have fun and play, but I always have my eyes on him making sure he isn’t playing too rough.

We cry more than we used to. The feelings of “why our son” cross my mind, however I know that nothing we did made this happen, we can’t go back and change anything. We have to continue to trust that God is in control and keep moving forward. We have been showered with blessings and know that even through these trials and heartbreaks, we are never alone.

For those reading this, please continue to pray for our son who has a long treatment plan ahead of him. Please pray that we would be wise in our decision making and that God would use Titus’ doctors and medicines to heal him from this scary disease.

It's Friday!

It’s Friday, and I think it is time for an update! Aubriana is out of school this coming Tuesday and I am very excited that it’s almost summertime! Last weekend we had some very successful fundraisers (volleyball tournament with silent auction, and garage sale). Thank you to everyone who donated!

Titus’ treatments are going well as he’s entered into his Interim Maintenance #1 portion of his treatment plan. He receives IV Vincristine and IV Methotrexate every @10 days for two months (a total of 5 treatments). He will also receive LP Methotrexate on his 4th treatment day along with the two IV chemo’s. So far the side effects have been limited to some nausea and a decreased appetite. The IV Methotrexate causes nausea/vomiting and mouth sores, and the Vincristine causes limb weakness; each med lowers his blood counts somewhat as well. Each treatment, the IV Methotrexate dose is increased, so we ask for continued prayer that the side effects would stay minor.

Aubri is doing well since her surgery and will hopefully get a full release from her doctor this coming Wednesday. Titus’ next treatment is scheduled for a week from today. Everything with baby Aurora couldn’t be going any smoother right now, thank the Lord!

Thank you to everyone for their continued prayers and support!

Titus’ Counts from Tuesday May 15th

• HGB = 9.1
• Platelet = 262,000
• ANC = 940
• WBC = 3,040

Update of Aurora

Well, I am now 30 weeks and a few days along…It seems like yesterday that we found out we were expecting again, what a blessed surprise that was! Starting in a week and a half, I will have to go in weekly for biophysicals for our little girl. These are similar to an ultrasound, but it is testing the baby’s “breathing”, heart rate, movement etc., and she has 30 minutes to pass, otherwise we will then have a non-stress test. The reason for these biophysicals is because I have a genetic defect called MTHFR.

• *”Methylenetetrahydrofolate reductase (MTHFR) is a rare genetic defect that can lead to complications in pregnancy. Methylenetetrahydrofolate reductase (MTHFR) is the name of a gene that produces an enzyme, also called methylenetetrahydrofolate reductase. If a person carries the genetic mutation that inhibits production of this enzyme, it can result in hyperhomocytenemia, which is an elevated level of an enzyme called homocysteine found in blood plasma. When the body is deficient in methylenetetrahydrofolate reductase, its ability to absorb folate (also known as vitamin B9), such as folic acid, is inhibited. Folic acid and B9 are both essential to the development and health of the fetus.Because of a mother with MTHFR’s inability to efficiently metabolize folic acid and vitamin B9, the disorder has been linked to a variety of pregnancy complications.
• Because MTHFR is a blood-based disease with many varieties, symptoms vary depending on the exact mutation of the disease. They can include: blood clot, depression, anxiety”

*Information gathered from various sites.

I have been taking folic acid daily, daily lovenox injections to help prevent blood clots, as well as a weekly progesterone injection to help keep my uterus “calm”. With all of the different meds and precautions being taken because of past pregnancy complications, this pregnancy has been very calm and without complication. We are so thankful and blessed! Our little girl has a few more weeks before we get to snuggle her, and we can’t wait. Titus and Aubri give her hugs daily and are excited to “play” with their new baby sister.

Aubri's Surgery

Aubri had tubes placed when she was a year old because she had constant ear infections. Her doctor went through every type of antibiotic and each time we finished one, her ears would flair up again. Tubes ended up being our only choice. Now, the ear tubes do eventually fall out, and Aubri had both of hers fall out when she was about three years old, and her left eardrum never closed up as is should have. The hole in her eardrum caused her pain when she would get water in her ears, as well as hearing loss.

Aubriana had surgery to repair her eardrum on Tuesday (April 24, 2012). Everything went smoothly during surgery. She had a rough time in recovery, was in some pain, but is doing so much better today!

Her surgery this Tuesday involved using a skin graft obtained just inside her ear, and placing it over the hole of the eardrum. We are praying that it closes the hole successfully, although her doctor did say this type of surgery had a 90% success rate. Praying she is one of the 90%!

Counts - What they mean

****UPDATED April 27, 2012

I’ve mentioned posting more information on Titus’ blood counts and what it means if a certain one gets too low. So here you go…

Many anti-cancer medications will affect the bone marrow and temporarily stop the making of red blood cells, white blood cells (neutrophils, monocytes, etc.) and platelets. This may cause anemia (low hemoglobin/red blood cells), and increased risk of infection (low white blood cells) and bleeding (low platelets). There are many blood tests that our Doctors perform each week to watch his blood counts.

• Hemoglobin (HGB) or Red Blood Cells: Normal is around 11 or 12 for Titus, less than 8 would generally require a blood transfusion.
• White Blood Cells (WBC): Fight infection – When low he is more likely to get sick from bacterial and viral infections.
• Neutrophils (ANC): these are a type of white blood cells that are very important in fighting bacterial infections. When Titus’ absolute neutrophil count (ANC) is low, less than 500, it is called neutropenia. He would be admitted to the hospital for antibiotics if he were to get a fever of 101.5 or higher during this time. His scheduled chemo will most likely be altered if his ANC is below 700. He is to be kept away from sick individuals at all times, however, the lower his ANC gets, the more precautions must be taken.
• Platelets (PLT): these clot the blood. When low, Titus is more likely to bruise easily, or have bleeding problems. If platelets get lower than 20,000, he will generally receive a transfusion.

Hemoglobin (HGB):

• Normal = 11/12
• Low (need transfusion) <8

Neutrophils (ANC):

• Normal >1500
• Mild neutropenia 1000-1500
• Moderate neutropenia 500-1000
• Severe neutropenia <500

Platelets (PLT):

• Normal >150,000
• Restrict Activity <50,000
• PLT transfusion <20,000

White Blood Cells (WBC):

• Normal range is about 4,500 – 11,000

As of April 20, 2012 his counts are:

• HGB = 8.4
• PLT = 299,000
• ANC = 730
• WBC = 2,180

As of April 27th, 2012 his counts are:

• HGB = 8.7
• PLT = 262,000
• ANC = 2730
• WBC = 4,400