It’s been a while, actually a LONG while, since we updated the blog. Let me bring things current.
Tyler update: On April 29, Tyler had surgery to remove the cancerous bone tumor. Doctor Randall removed 10 cm of the upper part of his humorous along with the rotator cuff and surrounding tissue. As planned, the Doctor detached his 10 cm clavicle (collar bone) and rotated it horizontally to attach to the remaining part of his humorous. For the more medically advanced, this rare procedure is known as clavicular post humeri. To say Tyler was a trooper through the whole ordeal would be an understatement. We continue to marvel at his ability to adapt. After three months of healing and mild physical therapy, he’s ready to start more intense rehabilitation. So far his arm works really well when his elbow is bent and his hand is out in front of him. He can do most anything with his hands. Tyler surprised us the other day when he hopped on his bike and took it for a spin around the block. When he was finished with that, he took the scooter for a trial run too. He said it felt pretty normal. We were excited to tell the doctor, but unfortunately doc said bike riding was outlawed for the next little while. They want the bone to heal real well before Ty starts doing risky things.
It’s August now, and we’re on the down heal slope with Tyler’s chemo. With four more treatments, we should be done mid September. Although this is a huge relief, the last four will probably be the hardest. Ty’s little body has been through the ringer, which makes it harder and harder to bounce back. After doxorubicin Ty usually has unplanned visits to the hospital to work through fever, dehydration and painful mouth and throat sores. Actually, we’re at the hospital today. This week Ty’s had two blood transfusions and platelet stimulation shots to help his body recover. If his ANC (absolute neutrophil count) is good tomorrow, and he can eat and drink without pain meds, we’ll be going home.
The Make a Wish Foundation contacted us a few weeks ago. Apparently someone nominated Tyler to make a wish. Nate, Zach and Sammy have been helping Tyler say things with the word Disney in it. Truth is, Tyler will probably pick a new set of Legos. Whatever the outcome we are just grateful at the generosity of the sponsors.
Other family notes:
Nate got back from trek last week; he had a great time. Came back a new man actually. He’s also playing football again so he’s busy with two-a-days. Nate will be a ninth grader this year. Any takers for early morning seminary chauffeuring? j/k
Zach spent the better part of the summer playing baseball. Either on the diamond or work-ups in the park, I never saw him without his mitt. In fact he pretty much slept in his cleats and batting gloves. However, thanks to the World Cup, Zach switched his fall profession to soccer.
Sammy spent the summer on a perpetual vacation. There’s not enough space on the Internet to list where she’s been. Cousins, campouts, Lagoon, sleepovers, swimming were just a few activities. Sometimes turn-around between events was mere seconds.
Since the kids are playing sports, it looks like our fall lineup is complete. With the increased metabolism going around, we might have to hijack a passing grocery truck to stock the pantry. Actually, we’re looking forward to hospital free days this fall. It couldn’t come soon enough.
A few weeks ago we escaped to St George for the weekend to watch the Sunshine Tournament. My extended family goes every third week of March to enjoy the year’s first hint of sunshine, watch a little baseball and hike the red rock. This year I guided a carload of family on their maiden voyage to Angel’s Landing in Zion National Park. Nate, Zach and I went last October and it was a blast! Angel’s Landing is a very simple hike with the occasional 1300-foot drop, just a step off the trail. Now we didn’t expect snow, but unfortunately we hit an impassible patch just 100 feet from the summit. For those familiar with Angel’s Landing, we made it to the last set of chains before the top. (The chains are to steady your balance, so you don’t fall off the mountain). Needless to say, Angel’s Landing is not for the ‘heights’ sensitive hiker.
The rest of our stay was spent swimming, eating at Texas Roadhouse (the kid’s favorite, and Grandpa Errol’s treat), enjoying the sun and watching the Spanish Fork Dons cream every team they played. I have yet to see the Dons take a team all 7. They usually win in 4! I think the Dons have won the Sunshine Tournament for the last 100 years! Anyway, my Nephew Dallas is a senior this year, so this will have been the last hurrah supporting the family for a while. We’ll still go to the Sunshine Tournament of course. It’s been a family tradition for as long as I remember.
We’re working on Ty’s 5th treatment this week. The process started with a 7-8 hour IV drip, through his under-the-skin port-a-cath. These fluids are given in order to balance his PH level. If his levels aren’t evened out correctly, the acid in his fluids can cause the chemotherapy to accumulate in his kidneys and crystallize. This would cause Ty’s kidneys to shut down or fail. The nurses keep his IV fluids pumping the entire time we’re in the hospital. The nurses checks his levels every two hours. After his body reaches the desired PH level a nurse, dressed in protective clothing that resembles a Hasmat suit, brings in the chemo bag (Not so comforting). The name of this week’s therapy is Methotrextate. This is given intravenously over a 4-hour period, and then we wait for the Methotrexate to clear his body to a level less than .01. This process takes a varying amount of time. Like everything else here, it all depends on the patient. (I’m growing weary of this answer). This is the third time Ty has had a treatment of Methotrexate. Kirk and I are finding ways to play the “Meth game”. The more Ty drinks and eats, the faster the Methotrexate clears his little body. Sounds easy, right? Factor in mouth/throat sores, a sick stomach and the ability to throw up at the hint of any smell, and this becomes a full time job. We use distractions such as books, cartoons, and movies, Legos, Poptropica and the Wii. This keeps his mind off what we’re trying to have him to eat and drink. The days are filled constantly trying to get him to eat and drink. Truth is it’s emotionally and physically exhausting. This leads us to another issue that Ty has: weight loss. Ty has consistently lost weight the last 9 weeks. He’s currently down 10 lbs. Here is where we are grateful Ty is built like a brick house. 10 lbs. is nothing to be alarmed about, but still we are concerned. The doctor has ordered an appetite stimulant that Ty takes orally three times a day. Can you believe there is such a thing? I thought an appetite stimulant was just called stress! Apparently I’ve been taking appetite stimulant without even knowing. ☺ Ty is on several anti-nausea medicines to help his chemo infusions run smooth. Kirk is very diligent in tracking which medicine works and which doesn’t. We have experienced several scary and uneasy side effects from the anti-nausea medicines. No parent should have to see his or her child go through severe depression or hallucination. These times have been very dark and sad for us. We’re now to a point where we have eliminated the “bad” medicines, and time the “good” one correctly. Ty has been less sick since we figured this out. He starts with Zofran every 6 hours, plus a once a day dose of Dethamexazone, and several doses of Benadryl as needed. Leucovorin is given with this treatment to help speed up the breakdown process of Methotrexate. The things Ty goes through during his chemo treatments can be very disturbing. From the different chemotherapies, to the medication to combat the side effects, it is enough to give us nightmares, and it sometimes does. We have to consciously remind ourselves, we do this for the best possible outcome. Ty has done pretty well this trip. Everything as gone as expected with no surprises. When we first got here Wednesday a cool nurse named Irish was laughing and teasing Ty, making him feel right at home. Irish even challenged Ty to pull April fools pranks by squirting everyone with a syringe. Needles to say any Nurse, Tech or Doctor that walked through the door got wet. This is a good sign that Ty is getting back to normal. His Methotrexate level is down to .74 this morning. We hope he will be able to go home early Saturday afternoon. A big thanks goes out to our family, ward and friends for the prayers, kind acts and best wishes directed to our family, especially Ty Ty. I truly know that prayers in our behalf have been heard and answered. I have felt and continue to feel help, comfort and love that comes through the Savior, Jesus Christ. Our hearts are full of love and gratitude to all of you.
Welcome to the first posting on our blog. With the recent turn of events, it’s important for us to share our experiences with family and friends.
As many of you know, our youngest child, six-year-old Tyler, (PRONOUNCED… Ty Ty, Ty, Tyler Bug, Turkey, Turkey-Bird, Turks and Rascal) was recently diagnosed with bone cancer, called Osteosarcoma. This type of cancer affects about 400 pre-teen and adolescents in the US each year.
Tyler started to complain about his arm hurting a week or so after New Years. We didn’t think much of it until one night he showed Sarah and I how difficult it was to lift his arm. We decided to get him checked, but the very next morning (January 21st) he slipped on the ice at school and broke his arm just below the shoulder. Tyler’s kindergarten teacher who witnessed him slip said it was the most unnatural fall she’d seen. How can a boy moving forward lose both feet from underneath him, but still manages to fall squarely on his right shoulder? Truth is, the arm break was an enormous blessing, because it was the catalyst that lead to a swift prognosis. The next two weeks were full of X-rays, MRIs, CAT scans, blood tests, surgeries, and biopsies, until ultimately the dreaded news of cancer came Friday, January 29th.
Words can’t begin describe the range of emotions we’ve felt this past month or so. Suddenly, everything we’ve learned, been taught or felt about our earthly mortal journey has become ever so real and vivid. Love that brings unspeakable joy, can equally cast a shadow of unimaginable pain and sadness. We hope and pray with all our hearts that our faith will triumph our fears.
Tyler started Chemotherapy on February 5th. This first round was a 48-hour cocktail infusion of sorts, including Doxorubicin, Cisplatin and a plethora of anti nausea medicines. Suffice to say we weren’t prepared for this. The nausea, and side affects of the anti-nausea medicine created powerful mood swings. He was asking questions like: What’s wrong with me? Why are they taking my blood? Other comments like: I wanna go home, or, I just wanna play with my friends, or, Grandma, don’t leave! This was about as much as we could take. The comfort and assurance came from the doctors, nurses and technicians were more than accommodating. They explained in great detail the procedures, thus calming our nerves a bit. I really don’t know what we would have done without their support. They say it gets easier, we pray they’re right.
The Doxorubicin and Cisplatin attack cancer cells while at the same time inhibit new platelets, and red and white blood cell from growing. This means Tyler will be more prone to sickness, infection and bruising while working through this treatment. Another expected side-affect is hair loss, which happened last week. His blood count rebounded after two weeks, so he was able to return to school for a few days. His teachers and classmates were most supportive. Going to schools really lifts Tyler’s spirits. Throughout the treatment there will be six or so regiments of Doxorubicin and Cisplatin six or seven weeks apart.
We’re actually at the hospital today (February 27th) finishing up the second round of chemotherapy. This round is a four-hour Methotrexate infusion, then a four day wait for the drug to do its thing and wear off. Tyler wasn’t as sick with this treatment. He was up and eating the second day. In fact he was quite pleasant the last two days, just a little bit bored. Methotrexate aggressively attacks cancer cells while at the same time thins the mucus lining in the GI tract. Tyler will be prone to mouth sores. We pray the side affects will be mild and won’t cause too much discomfort.
It’s too early to know definitively, but if all goes well Tyler will have an operation in May. The will remove the cancerous area and reconstruct his upper arm using his clavicle. We don’t fully understand how that’s going to work, but the Doctor says if existing bones are used, he stands a good chance at having acceptable arm motion.
Nathan (Nate) is our oldest. He's a 13 year old 8th grader. Zachary (Zach) is our second child. He's a 10 year old 5th grader. Samantha (Sammy) is our only daughter. She is in 4th grade and is 9 years old. Tyler (Ty Ty) is our youngest. He's a big 6 year old Kindergardener, that could easily pass for a second-grader.