Wednesday, November 10, 2010

Sleepless Nights

I have been having a hard time falling asleep and that night was no exception. My mind just wouldn't turn off. My thoughts took me on a path that led to my mom. This seems to be occurring more and more frequently. Perhaps it is because I have been going through a difficult time and could use some motherly wisdom. Perhaps because the holidays are near and that means more family gatherings with a distinct and unforgettable void. Perhaps because in a little over a month it will have been one year since she took her life.

I tried to sob silently, so that I wouldn't bother my sleeping husband. My plan didn't work. After telling him I was thinking of Mom, he quietly held me in his arms until I fell back asleep.

When I begin to take inventory of my plights over the course of a year, I feel sorry for myself. There are not many who can say six months after their mother committed suicide, they found out they were expecting their fifth child and three months later their oldest son (6) was diagnosed with cancer. I used to think my life was boring; that I had no life-lessons to speak of that would contribute to the lives of others. I am coming to the realization that there is a reason that no man is an island. We are here to help and lift each other. My ability to relate on a very personal level to a range of other people has been extremely elevated over the course of just one year.

Yet, as I am still struggling, I can think of plenty of other people whose box of rocks I would rather not have. I think we all can... and for good reason. God, in His infinite wisdom and mercy, allows us to be tried and tested on a case-by-case basis to help each of us individually reach our fullest potential. Compassion is developed with long-suffering, patience with endurance, wisdom with experience. Our trials refine us, if we let them.

Many people ask me how I do it, how I am not a bitter basketcase. These eternal truths are the only things that help me daily climb out of the pit of despair: Faith in my Lord and Savior, Jesus Christ, and my testimony of God's Plan of Happiness.

Friday, October 29, 2010

Back Here Already?

"I felt bad for Dad last night."
"Why?"
"Because he had to stay up and rub my legs all night. I didn't get much sleep."
"He's a great dad. He loves you so much."

Will woke up yesterday morning at 3:30am and went to work. After working 1o hours, he came home and worked in the front yard until after the sun went down. That night around 10:00, Greg's temperature went up to 100.9. Will took him to the hospital (so that I could get the rest that my body needs - he is about as stubborn as I am and that's one of the reasons I love him) with an automatic admission. Greg has been doing so wonderful (eating, sleeping, and exercising) since we got home from the hospital after his second round of chemotherapy. We were hoping that his blood count was high enough to fight the infection himself, but were pretty sure that wouldn't be the case... and it wasn't.

The ANC (actual neutrophil count) needs to be at 500 or more to be released. His was at 60. Which is better than the 9 last time, or so we thought. Turns out, that it was on its way down, not up. It is currently at 39.

As I write this, Greg is about to get a platelet transfusion.

Wednesday, October 27, 2010

Baldies

A week or so ago, Will buzzed his head so that Greg wouldn't be alone. William, who hates his hair cut, also got a buzz.
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Greg noticed that while his hair was falling out, Dad's hair was growing. He told his dad that he should cut his hair again... and so it was.
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I love their new looks... maybe we'll keep their hair buzzed to remind us of this bump in the road.

Monday, October 25, 2010

In the Service of God

While home, not only has Greg found his appetite, but he has been acting normal - riding his bike, playing outside, doing his chores, etc. And he seems to be making more responsible decisions. It's interesting how when we go through hard things, they refine us, if we let them.

This is just one story that reveals Greg's refined nature: He was playing at the neighbors house. He came in our house and grabbed a garbage sack and left. When he came back, he said he was picking up garbage out of the neighbor's yard. I didn't think the family was home and I asked if the mother knew he was doing it (sometimes she rewards them for picking up) and he said no. He brought the bag of leaves and such home and put it in our garbage can. I asked why he did it and he just said because it needed to be picked up. I drilled some more and his response was that he thought it would be cool to see the mom get excited that he was helping (and I thought I was going to hear that he was hoping for a quarter). What a great kid! He did, however, get upset that Madilyn wasn't helping pick up and was instead watching Bella. Nobody's perfect.

I wonder if it is because of this scripture that we are memorizing as a family: "And behold, I tell you these things that ye may learn wisdom; that ye may learn that when ye are in the service of your fellow beings, ye are only in the service of your God." (Mosiah 2:17)

Friday, October 22, 2010

Paycheck: Sunday, the Sabbath

As a full time mother and housewife, I my paychecks come in seeing growth in my children.

Greg won the Bingo game at the hospital and was rewarded with a few tattoos. It was Friday and he was thinking about putting them on. He said he should wait because Sunday was coming. I commented that he wouldn't be going to church this week. He said, "We still shouldn't wear tattoos on Sunday."

Sunday is the Sabbath day, a day of holiness. Period.

He taught me a lesson that day.

No News is Good News

After a great and uneventful weekend, we went in on Monday to verify he was ready. His counts were up and for the docs, that seemed reason enough to get going on the second round. I felt much better after having a few great days and knowing that the end was in sight.

Greg started his second (and last) round of chemotherapy on Tuesday. We went to a different hospital (the one where Greg was initially diagnosed) and had another good experience. The nurses remembered him from over a month ago and would pop in and say hi.

His therapy, although the same medications and same dosages, went so much better this time around. No Morphine. No complaints of leg or stomach pain. Sleeping and eating normally. Was it because he wasn't trying to recover from the PICC line insertion procedure (and being on Morphine from the get-go) right before starting chemo? Was it because his colon had more time to heal? Was it the Priesthood blessing? Was it the better atmosphere? nurses and staff? Was it the window next to his bed and the proximity of the parent cot? Was it our better attitude? Was it the two doses of Prednisone that were given before even starting the big drugs? Was it because we now knew what to expect? Perhaps we'll never know. For whatever reason(s) we are grateful.

Wednesday, October 20, 2010

"We cannot control the wind, but we have power to adjust the sails." -Chinese Proverb

Wednesday, October 13, 2010

Hope

Greg was doing great, but his legs were bothering him at night. We found out that he did, in fact, have some stomach issues. His C-def (?), which is not as receptive to the antibiotic, was overgrown. The solution: Activia yogurt if he wasn't having diaherria, a prescription if he was. His last stool, which was the day before, was liquidy, so the doc called in the prescription for the antibiotic. I was hesitant to give him an antibiotic in the first place, especially when he would have to be taking it during his chemo treatment. I talked to our favorite nurse practitioner the next morning who said the Flagyl was to be taken if he was having intense diaherria, which was not the case. I'm glad we didn't start it.

I was somewhat hoping that if we did have to give him the antibiotic, it would mean we would have to push back his chemotherapy. Twenty-one days in between treatments just doesn't seem right. They say it's best to kick the cancer while it's down, but I was not physically, mentally or emotionally ready to start again - he hasn't even healed from the first round.

If he did not have a fever, we were advised to give him Tylenol at night for the leg pain. We didn't need it. We both got a full nights rest. For the first time, I felt hope that we could start chemotherapy again.

Tuesday, October 12, 2010

Exhausted

Will had said that he hadn't got a wink of sleep last night. I didn't realize how true to his word he was being.

It was my shift tonight. We were walking the halls at 2am, 5am and 7am. We made 10 laps in five hours. Walking was the only thing that would ease his leg pain. I would tell him to push the button if he was in pain and he would say, "I did, Mom, it doesn't work. I sleep, but I can still feel the pain." For better or worse, we were released later that day.

He was still having intense leg pain and wanted his legs to be rubbed all the time. He was used to 24/7 care, but now he had to share Will and me with three other kiddos and household responsibilities.

We had previously arranged dinner for tonight, but canceled a few days ago because we didn't know which day we would be home. An inspired friend called Will earlier today to set up dinner for us! A nice home-cooked meal is one of the greatest things to come home to. Thanks to all those who have sacrificed on behalf of our family.

That night, I almost wished we were back in the hospital. In the middle of the long night, I found myself wanting to tell him to push the button to dispense Morphine so that I could get some rest.

We're Home!

...for now.

Monday, October 11, 2010

A long time friend whom I hadn't seen in years, stopped by the hospital with some toys for Greg and the kids. Although I wasn't there, Will had a nice chat with her. I was moved to tears when I found out. If I were her, I could think of a hundred reasons to not make the surprise visit. I am thankful for her example, and so many others, who serve and extend a helping hand without talking themselves out of it.

Day ?

If you asked me point blank what day it is, you would probably get a blank stare. I'm sure we are still in October, but I fear we are nearing the end and I've yet to make Halloween costumes. I am certain I'll be breaking my tradition - seven years strong. Life goes on, it always does.

The last four days have run together. I'll try to summarize in chronological order.

They started him on intravenous fluids and an antibiotic (Maxipime) the fist day we were in the hospital. The doc thought his stomach pain was probably from mucusitis, which affects the lining of his intestinal track from mouth to rear; it should heal in a few days with the increase in his blood count. (If not, it's constipation and he'll have to take that nasty sour Magnesium Citrate to clean him out.) To relieve his pain until then, the doc continued the Morphine, but at a higher level (1.5mg). The IV Morphine takes effect quicker, but it also wears off quicker. It is the only pain killer that will not mask a fever, so it's what they use. The orders were for 1.5mg every three hours as needed. Each injection would knock him out for a few hours. At times, Greg would be in a crying fit before the next dose; however, after rubbing his legs or distracting him, he was able to withstand the pain for a few extra hours.

The next day, the doc ordered a PCA (Patient Controlled Anesthesia) machine where he would get .5mg every hour in addition to .3mg every ten minutes if he so chose to push the button, maxing out at a total of 2.3mg per hour. For the next few days, he was down and out - literally. His eyes would go crazy when he was about to take a Morphine-induced nap. Although he was 'asleep', it was obvious there were still moments of pain. I didn't like it. I was not sold on a philosophy that would knock him out for a few days and then when he wakes up he'll be hungry and happy. Wouldn't that mask any underlying problems? Is it better for him to be asleep and out of pain, than awake and miserable? I don't know, but I didn't feel like this was the best solution. He would only push the button a few times a day. I found some comfort in that.

His ability to fight infection, as calculated by his bloodwork, increased rapidly, as promised by the doctor; one day it was at a 9, then a 21, then 49, ... we were thinking at this rate, we'll never go home. Greg said our evening prayer and gave thanks for all we have and asked for a blessing to go home soon. The next morning, his counts were up - way up - 590!

His body could now fight infection, but his temperature (which was hovering around 100.6) had to go down, he also had to be eating and drinking enough, and not be having pain. They bumped his Morhphine drip machine down so that he only got .2 every hour with hopes that they could take him off of it completely after lunch. They also gave him some medicine that coats the lining of his stomach, and an antacid med. So, our sights were set on the morrow. Greg cried when he asked if we were going home today and got a different answer than what he had been hoping for.

Will spent Monday with him. He said it didn't look like discharge day because Greg was miserable and neither got a wink of sleep. His calf cramps were now full leg cramps, with some pain on his shins, but more disconcerting was his increase in stomach pain, especially around his belly button.

The kids and I had fun playing outside - drawing on the street (an activity they woke me up early begging me to do) and playing in the water hose (in October!). It was a relaxing day. I was looking forward to having Greg finally come home this afternoon. Surely we could treat his leg cramps with warmed bean bags and make sure he was eating and drinking enough, and wouldn't an afternoon in the sun be Mother Nature's healing touch?

...and then I talked to Will and found out about Greg's pain. The light at the end of the tunnel seemed farther away.

I hate having to farm my kids out yet again. It's hard on them, too. Bella cried and grabbed my leg this morning when a friend came to the door; I think she was afraid her time with Mom had come to an end. There are only a few people that I know Bella won't be crying her eyes out the whole time I am gone, so I've been using and abusing them anytime I need someone to watch the kids. I feel like I'm incurring a debt that I will never be able to repay, yet they continue to serve. I am so thankful for them and for the Christlike love they exemplify.

The nurse prematurely said we could go home. I didn't know if I should jump for joy or argue with her that she was wrong. Whether I liked it or not, he still needed his high dose of morphine, and we needed to find the underlying causes of his leg and stomach pain.

They are stopping the antibiotic, the Morphine drip, lowering his Potassium Chloride solution (in hopes to make him thirsty and hungry), and they said to stop giving him the ex-lax chocolate.

And now he's in isolation until they can analyze a stool sample and prove there's not something bad growing in there. Isolation means: if he goes out, he needs to wear a mask and a hideous adult-sized yellow gown and if an outsider comes in, they get to wear all that and gloves, too. It's a joke. They have me walk to the parents lounge and back to use the bathroom without any problems, as long as I don't fill up my water while I'm there.

He's only been pooping every few days, so who knows how long we'll be in here. If I were more in a the-glass-is-half-full-mood, I'd add that he has been eating a little bit more (cereal and soup and a shot of Instant Breakfast, if we're lucky), so we should be out of here in no time.

They took an xray of his stomach; the results showed a little poop and a lot of gas. That's what they said last time and found out a week later he had intussusception and cancer. I'm skeptical... or maybe just extra tired. Probably both.

Thursday, October 7, 2010

Day 10: Back in the Hospital

Not yet to the point of being zonked out, still sensitive to life, I heard Greg whimpering and felt him put his legs over mine signaling that I needed to rub them. I noticed that they were hotter than normal. Will was still awake and took his temp; it was over 101.

We've been burning the candle at both ends these last few days and hoped his temperature would miraculously go down a few degrees so that we could get much needed sleep. After the third or fourth time of taking his temperature, the reality set in that we'd just won a ticket to the emergency room. We called the doctor who confirmed this.

They never told us the protocol if he were to get a fever. I just knew it wasn't good. I had thought about asking, but figured I might not want to know. I just hoped I wouldn't have to cross that bridge.

As I hugged him and told him that I loved him and that it was time for him to leave, my thoughts turned to what it may have been like when Heavenly Father gave him his last hug before He sent him to earth to experience his mortal probation. I realize now that I was overly paranoid, but I didn't know if I would see him again. He was so weak and frail and literally incapable of tackling the mountain before him. I ran upstairs and fell on my knees and cried mightily to my Father in Heaven on behalf of Greg.

I promised Will I would try to get some sleep. He sent a text awhile later saying that his blood count was low and that they were going to give him an antibiotic to combat the infection. Relieved that this was the solution, I gave-way to my body's longing for rest.

When morning came, I called Will to check on Greg and to see what the plan was. He wanted me to bring him a few items. I figured by the time I got to the children's hospital, Greg would be ready for discharge. However, knowing how tired and hungry Will must have been, I hurried to get myself and the kids ready, fed, out the door, and on our way to the sitter's.

The doctor came in shortly after I arrived at the hospital. I was thinking he was going to give us the recap and send us on our way. I was wrong. He said not to worry about his food and constipation issues. Among other things, he explained that his lack of ability to fight infection is part of the normal cycle of chemotherapy; his blood count would have to be 200 or more before he would release him - it was at an 8 or 9; it could take 3-5 days for his immune system to repair itself. My eyes filled with tears.

After allowing myself to calm down, I explained to my depressed son some benefits of being at the hospital: he gets Mom or Dad at his side 24/7, the kids aren't around to bother him when he doesn't feel like it, there are nurses right outside the door if we need help, there's an ipad in the schoolroom, they put the medications into his PICC line so he doesn't have to drink them, he can watch movies all day...

They upped the dose of Morphine and Greg went to sleep. When he came to momentarily we had an interesting conversation:

"Harry Potter had no choice but to fight the dragon."
"Greg, do you think that you are like Harry Potter?"
"I am just telling you."
"Was it a tough fight for Harry Potter?"
"Yes."
"Did he win?"
"Yes."
"Greg, you are like Harry Potter! And this cancer is your dragon! Guess who's going to win?"
"Me."
"Yes, Greg, you are going to beat this!"

I love being a mom. I have had many hours in the hospital to reflect on my life. I am learning I need to fully enjoy the blessings in my life: watching William's dimple appear as I'm swinging him on the swing, watching Bella get the courage to let go of the handle and slide down the slide, really listening to Greg's stories, bonding and making memories with Madilyn, spending quality time with Will... these are the things that really matter.

Wednesday, October 6, 2010

Here's to YOU!

The babysitting (both last minute and over extended hours/days), the delicious dinners, the anonymous inspirational basket, the emails, the blanket, the thoughts, the donated working hours, the goodies, the chemo caps, the prayers, the packages, the visits, the texts, the bags of books and activities, the offers for help ... we could go on and on.

Because of you, our load has been lightened. With humble sincerity, we thank you.

Day 9

Greg has been lethargic all day. I doubt he's spent 10 minutes sitting up. He even fell asleep sitting on the toilet! We've given him Morphine during the day to combat his leg pain. But it causes constipation and sleepiness. We noticed that his stomach is bloated which could be a side effect of a chemo drug, or it could be because he is constipated. One thing is for certain: it's definitely not because his stomach is full - I doubt the one fried egg he had today topped him off to the point of stretching. We're going with the constipation theory. The suggested stool softener, Miralax, isn't working sufficiently, so we've moved on to a laxative, Magnesium Citrate. To put it mildly, it is sour. Painstakingly, we are trying all kinds of concoctions to lower its potency, and lessen the gag-reflex, all to no avail. We've spent way too many hours trying to get him to take the 6 oz that should produce a bowel movement. Hopefully we'll find a winner before dawn.

Tuesday, October 5, 2010

Day 8

Greg looks sickly. It is obvious he is not well and that the chemotherapy is taking it's toll. He sleeps most of the day. During his waking moments, he is usually crying or whimpering. His arms and legs are getting thinner by the minute. He didn't eat dinner last night, and had two bites of scrambled eggs and two bites of cereal for breakfast. Papa brought pizza for lunch (Greg's request), and Greg ate a slice and a half!

We were able to do some school. Greg sat up and did his math pages and then he had to stop and rest for awhile.

Will made a fire in the pit and the neighbors came over for s'mores. Greg laid on the table and star-gazed.

He started complaining about his stomach hurting late this evening. His legs are still the main source of his pain and the only thing that seems to help is Will or me rubbing them, but he has mentioned his jaw hurting again.

Blessings: he still has his hair, he isn't this cranky beast we were warned about, he's not throwing up, and Will's home to help. This morning, all four kids were needing attention - I don't know how I would do it if Will wasn't home. Things could be worse, much worse.

Monday, October 4, 2010

Day 7 of Chemotherapy

My poor husband, not only does he have to deal with a child with cancer, he has to put up with a pregnant wife. This morning I was crying because he was playing Wii with Madilyn first thing this morning and I wanted to have a productive day and didn't want to kick it off with feeding their addictions while turning their brains to mush. He had taken the garbage out, and turned the water on our spout. He was doing everything right and was just answering the plea of an attention-starved daughter. I am so thankful that he is quick to forgive.

We went in to the oncologist's office for his second dose of Vincristine - an injection into the PICC line. Definitely do-able, or so I thought. When we got there, and half way through his appointment, Greg was crying because his legs hurt. He soon forgot about the leg pains when the nurse was changing his dressing, which requires the removal of a sticky clear bandage that takes up the majority of his upper arm. Adhesive removal is his Achilles heel.

He weighed 19.1 kg (whatever that means - I thought we were in America) but it is similar to his weight in the hospital, so I guess I shouldn't be too worried. The doctor checked his throat and gave him a cough drop. They said a warm bath might help his leg pain. It is a side effect of one of the chemo drugs and should go away after he stops taking the pills.

The results of the bloodwork showed his white blood cell count was low (1.6, a normal range is 5.0-12.0). He said we'll be fine as long as he doesn't get a fever. Call immediately if he has a temperature of 100.

We stopped by Costco on the way home to get a few essentials. The man behind us at the checkstand was asking Greg about his PICC line. I explained that he had cancer. With tears in his eyes, he said he lost his wife to ovarian cancer. I shed a tear, too. He gave Greg a high five that made Greg smile and the cashier said she would say a prayer for him. I am thankful to have come in contact with other God-fearing, hope-bearing folks that are willing to offer support even if only with a high five or a silent prayer.

I am astounded at the number of people who have turned their hearts to God, offering prayers on behalf of my son and our little family. One friend recounted that the prayers of her children have had more meaning since they've started praying for their friend, Gregory. She was thankful for this blessing. I am learning that if we let them, our trials not only bring us closer to God, but also all of our family and friends.

Grandma visited with goodies for all the kids and we talked her ear off about Greg' care. Will's brother had Leukemia when he was only a few years old, so she can empathize with what we are going through.

It was eight o'clock in the evening and Greg was whimpering while he was sleeping because of his leg pain. We took his temperature. My heart was racing as the digits kept raising and finally stopped at 100.2 degrees. Of course, my mind jumps to the worst possible conclusion. The doctor had said he'll be fine as long as he doesn't get a fever and now just hours later, he has a fever. Great. I called the doctor who said to just watch him for a few hours (because his ability to fight infections was high according to his bloodwork done that day), but call if it reached over 101. We took his temperature every half hour. It peaked at 100.6, just .4 degrees away from an ER visit. Will gave him a Priesthood Blessing, reminding him that this life is a time to learn how to do things that are hard to do, but are right. We did a brief family home evening, which included reciting the Articles of Faith. I heard Greg through his crying, reciting the Articles of Faith along with everyone else. He is such a good kid. There were a few crazy moments that Greg needed something, William was in the shower, Madilyn was having hard poop, and who knows what Bella was up to. Things calmed down as they always do. At 10:30, his temperature was back down to 100.2. The doctor repeated the advice and said to call the office in the morning. I couldn't sleep. We took his temp every few hours. His legs were hurting and we gave him Morphine. His temperature had gone down a few degrees by morning. Phew.

Sunday, October 3, 2010

Day 6 of Chemotherapy

Greg woke up crying last night - said he didn't know why. His legs are still hurting, but he doesn't want to take the Morphine. We gave him some when he woke up this morning anyway.

Today was much like yesterday - tired and not hungry.

We watched the last two session of General Conference today. Loved it.

We are starting to get the hang of giving him his meds. We learned it is better for only one of us (me - since Will will be at work part of the day) to take care of Greg's medications that way we don't get mixed up.

He still has his hair, but they say the side effects take their toll on days 7 - 10. Someone explained it like putting poison on weeds; it takes a few days for the weeds to actually die.

Saturday, October 2, 2010

Day 5 of Chemotherapy

We were able to get all but one of his medications filled last night. I tried a handful of pharmacies, with each one saying it would take a few days to get it in and wishing me luck. Greg didn't eat dinner last night and wasn't interested in breakfast. His mouth and throat were hurting, so he wouldn't eat or drink. We were in dyer need of a pain killer to keep this young tyke kicking.

Apparently I gave up too soon. Will found a pharmacy today that had the Morphine Sulfate solution... a tender mercy of the Lord. I can't believe I'm giving my six year old Morphine! I don't remember the last time I even gave him Tylenol. It eased his pain and he ate a bit.

Greg slept most of the day. He's starting to complain about leg pain.

We watched both sessions of General Conference today; a chance to hear from a living prophet and apostles is always something to look forward to. It's one of my favorite weekends. It was nice to relax in my pajamas, have my family all together in one room, and be refined.

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Friday, October 1, 2010

Day 4 of Chemotherapy

The nurse gave him his last dose of Cyclophosphamide at 12:30 this morning. He had to be hydrated for 12 hours after that dose. His mouth and throat have been sore, so he hasn't been eating much at all. Once we told him we could leave after he drank and ate enough, he did just that. The nurses said we could look at being discharged around noon. Will came over at 11:30 to make sure we were both there to hear any special instructions. We didn't leave the hospital until 4:45.

Greg was so excited to leave the hospital, but then was hysterical about the shot of Nuelasta at the doctor's office just a hop, skip, and a jump away. After all that he has been through with getting IVs, it's too bad they had to give him a shot under the skin and couldn't just inject it into his PICC line. We are grateful, however, that we don't have to give him the G-CSF medication, which is a daily shot; this Nuelasta has the same effects, but is a one time deal. Phew.

Upon arriving home, I felt like we had just brought a new baby home from the hospital - the other kids were craving attention and were bouncing off the walls because everyone is so excited to see each other, they have been bounced around among sitters, and they haven't been doing the normal routine for a few days. Great. Things will get back to normal soon... hopefully.

So... no fresh flowers, no immunizations for him or the other kids (unless approved), no being near friends with live viruses, no chicken pox, no playing with sick kids, no crowds, no leftovers. We have to take his temperature two times a day with the same thermometer - for consistency. If his temperature is 100.5 we are to call the doc immediately. He is to use his own bathroom. Brush his teeth with a soft brush. Grazing all day is better than three solid meals, proteins are a plus. Also watch for: sustained nausea, severe pain, lethargy, pallor, bruising, bleeding, and petechiae (look like small red freckles). We are to flush his PICC line every 12 hours, change the dressing on his PICC line once a week, Give him pills of Prednisone twice a day for a few days, then taper off, Zantac two times a day, but only when he's taking the pills, Nystatin and Preidex four times a day, Bactrim two times a day, but only on the weekends, Zofran if he has nausea or is vomiting (he has yet to experience this lovely side-effect... a tender mercy of the Lord), and last but not least, Morphine (not Tylenol) for pain.

Wow. I was way overwhelmed. All of this was just for Greg - my kid on self-pilot. I have three other kids and a husband needing me... and dishes that needed to be done. If it wasn't for Will's take-charge attitude about this, I would have sat in a corner and cried.

I'm not sure any of us fully understand that we'll be back at the hospital in a few weeks for round two. So far, we are taking it a day (and more often than not, an hour) at a time.

Thursday, September 30, 2010

Day 3 of Chemotherapy

Greg woke up at 8:00 in the morning and wanted to go on a walk. I asked if we could wait a bit so that I could get more sleep. His machine was beeping all night - why they don't have the nurse call button near the parent's sleeping chair at a children's hospital is beyond me. I would pop out of my chair and rush to hit the call button before the noise fully woke Greg up. I was exhausted when morning came. Greg was fine with waiting and slept in until about 10:00. We both probably would have slept longer had the 'friendly' nurse waited to check his vitals.

Will brought the kids in bright and early to visit Greg. Will had been taking care of the fruit snack coating on Greg's Prednisone pills and didn't want to miss a dose. He had all the kids showered, fed, and ready and at the hospital by 9:30! What a great dad!

While we were taking pictures, we noticed that Madilyn kept her distance from Greg. She was remembering last week, after Greg's PET scan, when he was radioactive the remainder of the day and we told the kids not to be by him. She was a lot more relaxed when we told her the medicines he had at the hospital couldn't make her sick.

Before I took the kids home, Greg took us to the classroom to show us the ipad he was playing yesterday.

Greg was bored out of his mind at the hospital. His jaws hurt, so he wouldn't eat and he didn't feel like doing anything. The nurse said the Vincristine could make his jaw hurt, but that normally doesn't happen until after a few doses. We are learning that Greg is super sensitive and super stubborn. I believe his sensitivity to his body is what allowed us to find his cancer in it's early stages. I am thankful for this supposed weakness.

Will had a stake leadership meeting he was to play the organ for tonight, so I had a helpful neighbor watch the kids while I switched with Will. He didn't have enough time to get the kids fed, himself ready, and then drop the kids off at his brother's and be back to play prelude music for his meeting. As he was getting ready to call the stake to inform them that he wouldn't be able to play the organ, an inspired neighbor showed up and said she would watch the kids at our house which allowed Will to not have to cancel last minute. She shared with us that when she was getting ready to pray with the kids, Bella started crying and wanted out of her crib so that she could be included. I am thankful for friends who are willing to take care of my kids in the same manner that I would if I were there.

Papa came to visit Greg and me at the hospital. It was a nice surprise.

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Wednesday, September 29, 2010

Day 2 of Chemotherapy

Little William wakes up this morning saying his stomach hurts and that he needs to go to the hospital like Greg. This comment is shortly followed by: "I can get another ball." I asked if he thought he got toys from going to the hospital. "Yes," was his reply. It is easy to see why he would think that. Greg has been spoiled silly by everyone. Which by the way, we are so thankful for your support! He loves it all! We are just worried that Christmas this year is going to be a let down :)

He has to take more of the Prednisone pills today (two times) and also gets the Cyclophosphamide twice (15 minutes every 12 hours). He seems to be handling everything just fine. His face is starting to get a little puffy, but he is still so cute!

Tuesday, September 28, 2010

Day 1 of Chemotherapy

The first day of chemotherapy Greg was to take all four drugs, starting with Prednisone. He was to take 2 and half of these uncoated pills. The problem is that Greg didn't know how to swallow pills. It started dissolving as soon as it hit his tongue and it had a nasty taste. He got the first half pill down without a problem. He got psyched out and threw it up. After a few intense moments, Will ended up crushing the pills and putting the powder in his own sugar coating - flattened fruit snack. It worked!

The other medications were given intravenously without problem. Greg has been doing fine. He seems to be a little more perky, loud, and outspoken than usual - it's the steroids.

Papa dropped Bella off at the hospital. She was so excited to see us. She had missed us, at least that's what Heather supposed all the tears and screaming meant. She ran up to me and gave me a big hug, then looked into my eyes and we hugged again. I couldn't help but think that this is what the reunion with my mom will be like.

I took her and picked up the other two kids from Stephanie's house. Shortly after I walked in the door, William had his backpack and shoes on and was holding his teddy bear and blanket. When we got in the car, he asked if we were going to visit Greg at the hospital. He sure misses his brother.

Madilyn has really stepped up to being the big sister. A few months ago, she was so afraid of people that she would just cling to me. And now she willingly gets dropped off and takes charge of her younger siblings - forgetting herself and serving.

The nurse removed the IV in his right hand. He was looking forward to this because he can now play Wii more easily.

Will spent the night at the hospital on a pull-out chair bed. He has been taking detailed notes and is afraid to leave me alone with Greg and the nurses. That's not entirely true; it's mainly because I'm pregnant, I can not handle Greg's urine (which needs to be measured), so Will is sacrificing much needed sleep to allow me to stay home and watch the kiddos. He's my hero.

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PICC Line

We checked in the Children's Hospital at 8:30 in the morning. They got the IV going shortly after and then started the PICC line. The PICC line is a thin spaghetti-like tube that is inserted into a vein in the arm that goes to a vein near the heart. They use this line to draw blood and to give the medications without needing to poke him every time - it is similar to an IV, but it is able to stay in his body for months.

The nurse did the procedure in Greg's room. They sedated him first. The procedure took a lot longer than we were expecting. I shed a few tears seeing Greg 'asleep' for such a long time. The nurse couldn't get it all the way to the heart in the left arm above the elbow, so she tried on the right arm. No luck there either. They called a specialist, who was unable to make it, so they had another nurse trained in doing PICC lines come in to help. They were able to get it in the left arm at the elbow crease, not the ideal spot, but we were glad it was in.

The effects of the sedation drugs made his eyes shake. He would rub his eyes and kept asking us to get the stuff out. He would try to sit up, but the weight of his head would make him flop back onto his pillow. His vision was blurred and it made his stomach sick. They had to hydrate him for two hours before beginning chemotherapy. It was past three o'clock when he was finally able to eat. Greg had been fasting since midnight. Not once did he complain about being hungry.

Monday, September 27, 2010

City of Hope

We were very impressed with the City of Hope - the campus was large and beautiful, the people were professional and personal, the rhythm of the whole place flowed easily. It is a place of order. We felt welcomed there and were treated with respect.

The doctor spent well over an hour with us. We were impressed with his bedside manner. He even brought Greg coloring books because he noticed Greg's eyes were beginning to glaze over. After reviewing the reports, he agreed that the proposed treatment is what he would have them administer at the City of Hope. He advised not to use the Rituxan because there wasn't sufficient data for long term effects for a kid Greg's age and situation. He also gave us some additional information about supplemental medications that should be given to combat the effects of the chemotherapy. He had the slides and scans reviewed within hours and verified it was indeed Burkitt's Lymphoma. They were more than willing to admit us and were willing to let us stay at the on-campus village during and in between treatments.

We were very very tempted to stay; however we felt good about returning home; the treatment will be the same and we will be better able to care for the rest of our family and get prompt care if there is an emergency.

While getting ready to leave Los Angeles, a man approached us at the gas station, petitioning for $11 and some change to get the car part he needed to return to Henderson. We gave him all the cash we had, about $8, and told him why we were here. He asked our son's name and said he would pray for him. As we walked away from the car, his hands were stretched toward heaven and we could hear him giving praises.

We arrived home about 1:00 in the morning and... we didn't have keys to the front door. Luckily we gave our neighbor a key awhile ago. This wasn't the first time we've woken him up in the middle of the night to help out. He said he'd be bored if he didn't have neighbors like us. What a good attitude - even at 1:00 in the morning!

Sunday, September 26, 2010

The Refiner's Fire

Some time ago, a few ladies met in a certain city to study the scriptures. While reading the third chapter of Malachi, they came upon a remarkable expression in the third verse: "And he shall sit as a refiner and purifier of silver." (Malachi 3:3)

One lady proposed to visit a silversmith and report to them on what he said about the subject. She went accordingly, and without telling the object of her errand, begged the silversmith to tell her about the process of refining silver.

After he had fully described it to her, she asked, "But Sir, do you sit while the work of refining is going on?"

"Oh, yes, Madame," replied the silversmith; "I must sit with my eye steadily fixed on the furnace, for if the time necessary for refining be exceeded in the slightest degree, the silver would be injured."

The lady at once saw the beauty, and comfort too of the expression, "And he shall sit as a refiner and purifier of silver." God sees it needful to put His children into a furnace; his eye is steadily intent on the work of purifying, and his wisdom and love are both engaged in the best manner for us. Our trials do not come at random, and he will not let us be tested beyond what we can endure.

Before she left, the lady asked one final question, "When do you know the process is complete?"

"Why that is quite simple," replied the silversmith. "When I can see my own image in the silver, the refining process is finished.

Saturday, September 25, 2010

Denial

Greg had been acting normal since before we left the hospital. It has made it easy to dismiss the idea that he has cancer. Our days at home proceeded as usual – we started into our daily school routine, we made our weekly trip to the library and raided the shelves of anything desert related, the biome we would be studying for the next two weeks. I had a few good friends show up unannounced with their mops and brooms and began cleaning. I was ever so thankful, yet felt it was entirely unnecessary. I felt fine. I was showered, dressed, and even had makeup on. My kids were all healthy. I was perfectly capable. I think maybe I was in denial.

The reality of his cancer hit me on Wednesday late afternoon when the nurse at the oncologist’s office said they had him scheduled to start his chemotherapy tomorrow. Tomorrow?!? I’m not ready to see him in pain and be miserable. I’m not ready to be away from my other kids the majority of the day, I’m not ready to make the final call about moving forward with this treatment. I’m not ready for him to start on Saturday, let alone tomorrow! She was able to set the start date for his chemotherapy back to the scheduled date – Saturday. Phew.

After a few other frustrations with the office and the hospital, late Thursday night we applied online for a second opinion at the City of Hope. They called the next morning and told me the reports and scans they would need. The information and scans she was requesting should have taken, in her opinion, a few business days to obtain. Miraculously, within a few hours, the nurse at the oncologists’ office had faxed over all the needed reports, the CT and PET scans were put on disks and ready for pick up, and the pathologist had already talked to the City of Hope nurse and was willing to expedite the copying of the slides and have them available for pick up in the morning. Before we knew it, we were scheduled for a second opinion at the City of Hope on Monday morning.

I feel good. Mainly because I am excited to get a second opinion from a Lymphoma specialist – before starting chemotherapy - and to feel the peace of mind of knowing we are making a better-informed decision. Partially because that means we are putting off chemotherapy for a few more days.

Will told me that his coworkers donated some of their hours so that he would spend time taking care of Greg. I cried tears of gratitude.

We acknowledge the hand of Almighty God in the answering of all of our prayers on Greg’s behalf. Please continue to keep us in your prayers.

Wednesday, September 15, 2010

Greg has cancer

As many of you know, we took him to the ER because he was experiencing intense abdominal pain. After a CT Scan, the doctor found he had an intussusception (his colon was telescoping in on itself). Because he was over 3 years old, they would have to surgically repair his colon and would follow common procedure and remove his appendix as well. The surgeon found the leading point that caused the intussusception to be a mass with swollen lymph nodes. He removed that mass and reconnected his colon. Greg was in the hospital healing for 7 days. He couldn't eat or drink for 5 of those days. He was in good spirits the whole time!

The pathology report of the removed mass stated that it was malignant. Greg was diagnosed with Burkitt's Lymphoma on September 9, 2010. Burkitt’s Lymphoma is under the umbrella of Non-Hodgkin’s Lymphoma – a cancer of the lymph system (specifically attacking B-cells), which is a group of tissues and organs found throughout the body. With non-Hodgkin’s lymphoma, the body makes abnormal lymphocytes which grow out of control, thus classifying them as cancerous. The cells are considered abnormal because they do not perform their proper function of disposing of non-self cells – which are harmful cells that enter the body as infection and so forth. These cells collect and cause swelling in the lymph nodes. Due to the location of the tumor, he is considered a Stage 2 within Group A. This staging helps determine the treatment plans, which are predetermined by the Children’s Oncology Group and are universal, meaning that the same treatment will be given wherever we go.

The tumor was completely resected, meaning the margins around the area were clear of the cancer cells, which puts him at a 98% cure rate using the COPAD (or CHOP) chemotherapy approach. COPAD is code for the different drugs that will be administered during chemotherapy: Prednisone, Vincristine, cyclophosphamide, Doxorubicin, and G-CSF. He may also include Rituximab. Chemotherapy drugs are targeted at all growth cells – the good and the bad. The almost certain side effects of these drugs include lowered immune system, hair loss, and increased appetite. The possible side effects of these drugs include infertility, bladder damage, anger, and others. Thus, our desire to use Rituximab as explained below. We have also been told that since he will be undergoing only two sessions of chemotherapy the amount of drugs he will be getting is very limited, thus greatly lowering the possibility of the side effects of infertility, bladder damage, anger, and such.

All other exams have shown no signs of the cancer spreading. They will do a PET Scan next week to verify this as well. The doctor wants to do two treatments of chemotherapy to make sure cancer cells have not gone undetected, due to technology restraints. We are tentatively set up to start chemotherapy on Saturday, September 25th. Greg will be admitted to the hospital and undergo inpatient drug treatment for 3-5 days. The reason for the inpatient treatment is to keep him hydrated with an I.V. to counter the effects of bladder damage from the cyclophosphamide. He will suffer side effects of lowered immune system and hair loss from the drugs 7-10 days after treatment. Once his immune system recovers (usually 21 days later) he will undergo the second round of chemotherapy. He should be verified cancer-free again within a few months.

Thursday, July 16, 2009

Prepare to Provide

"We do live in turbulent times. Often the future is unknown; therefore, it behooves us to prepare for uncertainties. Statistics reveal that at some time, for a variety of reasons, you may find yourself in the role of financial provider. I urge you to pursue your education and learn marketable skills so that, should such a situation arise, you are prepared to provide." (Thomas S. Monson, “If Ye Are Prepared Ye Shall Not Fear,” Liahona, Nov 2004, 113–16)

Wednesday, April 8, 2009

Wheat Stroganoff

SOAK OVERNIGHT:
½ cup wheat
1 ½ cup water

BROWN:
1 lb hamburger
¾ cup onion
wheat, drained

ADD:
1 can vegetable soup
1 can cream of mushroom soup
1 cup sour cream

SIMMER for 10 minutes.
SERVE over:
Noodles or Rice

Blender Pancakes

COMBINE and MIX in a blender on HIGH for 2 minutes:
1 cup Wheat Kernels
1 cup Milk

ADD and then BLEND for 2 more minutes:
½ cup Milk

ADD and BLEND well:
2 eggs
1/3 cup oil
1 tsp Salt
1 Tbsp Honey

JUST before cooking,BLEND:
1 Tbsp Baking Powder

COOK on griddle.

ADD:
Syrup
Powdered Sugar

Chocolate Chip Oatmeal Cookies

CREAM until light and fluffy:
1 cup real Butter
1 cup Brown Sugar, packed
¾ cup White Sugar

ADD and BEAT one at a time:
1 Egg
1 Egg substitute (1 Tbsp ground Flax seed and 3 Tbsp Water)

ADD:
1 tsp Vanilla

COMBINE:
2 cups Wheat Flour
2 cups Quick Oats
1 tsp Salt
1 tsp Baking Soda

ADD flour/oat mix to creamed mixture.
MIX well.

ADD:
2 cups Chocolate Chips

SPOON onto cookie sheets

BAKE:
8-10 minutes on 350 degrees

Sunday, January 18, 2009

Family Communications: Vocalize Feelings

Basic suggestions for more effective family communication:
4. A willingness to vocalize feelings. How important it is to be willing to voice one’s thoughts and feelings. Yes, how important it is to be able to converse on the level of each family member. Too often we are inclined to let family members assume how we feel toward them. Often wrong conclusions are reached. Very often we could have performed better had we known how family members felt about us and what they expected.
John Powell shares this touching experience: “…A nurse came over to me and put a comforting arm around me. I couldn’t talk through my tears. I wanted to tell her: “ ‘I’m not crying because my father is dead. I’m crying because my father never told me that he was proud of me. He never told me that he loved me. Of course, I was expected to know these things. I was expected to know the great part I played in his life and the great part I occupied of his heart, but he never told me.’ ” (The Secret of Staying in Love, Niles, Ill.: Argus, 1974, p. 68.)
How significant are God’s words when he took the time to vocalize his feelings with, “This is my beloved Son,” yes, even the powerful communication, “This is my beloved Son, in whom I am well pleased.” (Matt. 3:17.)
Often parents communicate most effectively with their children by the way they listen to and address each other. Their conversations showing gentleness and love are heard by our ever-alert, impressionable children. We must learn to communicate effectively not only by voice, but by tone, feeling, glances, mannerisms, and total personality. Too often when we are not able to converse with a daughter or wife we wonder, “What is wrong with her?” when we should be wondering, “What is wrong with our methods?” A meaningful smile, an appropriate pat on the shoulder, and a warm handshake are all-important. Silence isolates. Strained silent periods cause wonderment, hurt, and, most often, wrong conclusions.
God knows the full impact of continuing communication as he admonishes us to pray constantly. He, too, has promised to respond as we relate to him effectively. (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)

Peanut Butter Oatmeal Bars

COMBINE :
½ cup shortening
2/3 cup peanut butter
1 1/3 brown sugar, packed
2 T dried whole egg
¼ cup water
3 T milk
1 ¼ tsp vanilla
(Note: shortening will be in small lumps)

STIR together:
1 ¾ cup whole wheat flour
½ tsp baking soda

BLEND into shortening mixture.
ADD:
2/3 cup quick oats

SPREAD into lightly greased 9x13 inch pan.
BAKE at 375 for 15-18 minutes.
COOL and CUT into squares.

Sunday, January 11, 2009

Family Communications: Willingness to Listen

Basic suggestions for more effective family communication:
3. A willingness to listen. Listening is more than being quiet. Listening is much more than silence. Listening requires undivided attention. The time to listen is when someone needs to be heard. The time to deal with a person with a problem is when he has the problem. The time to listen is the time when our interest and love are vital to the one who seeks our ear, our heart, our help, and our empathy.
We should all increase our ability to ask comfortable questions, and then listen—intently, naturally. Listening is a tied-in part of loving. How powerful are the words, “Wherefore, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath:
“For the wrath of man worketh not the righteousness of God.” (James 1:19–20.) (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)

Spiced Oat-N-Wheat Pancakes

MIX well:
2 cups whole wheat flour
1 cup rolled oats
¼ cup sugar
1 Tbsp baking powder
1 tsp salt
1 tsp cinnamon
¼ tsp ground cloves
¼ cup dry buttermilk
¼ cup dry nonfat milk
2 eggs
¼ cup oil
2 ¼ cup water

COOK large spoonfuls of batter on an oiled or buttered griddle over medium-low heat.
SERVE with maple syrup.

Saturday, January 3, 2009

Family Communications: Set the Stage

Basic suggestions for more effective family communication:
2. A willingness to set the stage. The location, setting, or circumstances should be comfortable, private, and conversation-conducive. Effective communications have been shared in a grove of trees, on the mount, by the sea, in family home evening, during a walk, in a car, during a vacation, a hospital visit, on the way to school, during the game. When the stage is set, we must be willing to let the other family member be front and center as we appropriately respond.
Months and years after the score of a baseball game is long forgotten, the memory of having been there all alone with Dad will never dim. I’ll not soon forget a ten-year-old girl excitedly telling me she had just ridden in the car with her daddy all the way from Salt Lake to Provo and back. “Was the radio on?” I asked. “Oh, no,” she responded, “all Daddy did was listen and talk to me.” She had her daddy all to herself in a setting she’ll not soon forget. Let the stage be set whenever the need is there. Let the stage be set whenever the other person is ready. (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)

Applesauce

COMBINE:
5 tablespoons water
1/4 cup packed brown sugar (may want to use less, depending on apple sweetness.)
2 t ablespoons fresh lemon juice
1 teaspoon ground cinnamon
4 pounds apples, peeled, cored, and halved

COVER AND COOK 1 hour on the stove top (medium-low heat).
STIR every 10 minutes.

Sunday, December 28, 2008

Family Communications: Sacrifice

Basic suggestions for more effective family communication:
1. A willingness to sacrifice. Be the kind of a family member who is willing to take time to be available. Develop the ability and self-discipline to think of other family members and their communication needs ahead of your own—a willingness to prepare for the moment—the sharing moment, the teaching moment. Shed the very appearance of preoccupation in self, and learn the skill of penetrating a family member’s shield of preoccupation. Sad is the day when a daughter is heard to say, “My mother gives me everything except herself.”
Too early and too often we sow the seeds of “Can’t you see I’m busy? Don’t bother me now.” When we convey the attitude of “Go away, don’t bother me now,” family members are apt to go elsewhere or isolate themselves in silence. All family members on some occasion or other must be taken on their own terms so they will be willing to come, share, and ask.
It takes personal sacrifice to communicate when conditions are right for the other person—during the meal preparation, after a date, a hurt, a victory, a disappointment, or when someone wants to share a confidence. One must be willing to forego personal convenience to invest time in establishing a firm foundation for family communication. When communication in the family seems to be bogging down, each individual should look to himself for the remedy.
If we would know true love and understanding one for another, we must realize that communication is more than a sharing of words. It is the wise sharing of emotions, feelings, and concerns. It is the sharing of oneself totally. “Who is a wise man and endued with knowledge among you? let him shew out of a good conversation his works with meekness of wisdom.” (James 3:13.) (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)

Tomato Sauce

HEAT in saucepan:
Olive Oil
ADD and SAUTE:
Onions
Garlic
ADD:
Roma tomatoes, chopped
Italian herbs
Salt and Pepper
Pinch of sugar

SIMMER covered for 25-30 minutes.

Family Communications

“To be effective, family communication must be an exchange of feelings and information. Doors of communication will swing open in the home if members will realize time and participation on the part of all are necessary ingredients. In family discussions, differences should not be ignored, but should be weighed and evaluated calmly. One’s point or opinion usually is not as important as a healthy, continuing relationship. Courtesy and respect in listening and responding during discussions are basic in proper dialogue. As we learn to participate together in meaningful associations, we are able to convey our thoughts of love, dependence, and interest. When we are inclined to give up in despair in our efforts to communicate because other family members have failed to respond, perhaps we would do well not to give up, but rather to give and take in our conversations. How important it is to know how to disagree with another’s point of view without being disagreeable. How important it is to have discussion periods ahead of decisions. Jones Stephens wrote, “I have learned that the head does not hear anything until the heart has listened, and that what the heart knows today the head will understand tomorrow.” (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)

Alfredo Sauce

MELT:
1 cube butter
ADD:
1 package cream cheese
¾ cup parmesan cheese, shredded
1 cup milk
1 clove of garlic

Serve with your choice of cooked pasta.

Monday, December 1, 2008

Family Communications

“…I have concluded that perhaps one of the principal reasons we fail to relate appropriately with family members is because we fail to apply some basics of personal communications. In Heb. 13:16 we read, “But to do good and to communicate forget not: for with such sacrifices God is well pleased.” Communications in the family will often be a sacrifice because we are expected to use our time, our means, our talent, and our patience to impart, share, and understand. Too often we use communication periods as occasions to tell, dictate, plead, or threaten. Nowhere in the broadest sense should communication in the family be used to impose, command, or embarrass.” (Marvin J. Ashton, “Family Communications,” Ensign, May 1976, 52)