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.

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.

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.

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.

I love their new looks... maybe we'll keep their hair buzzed to remind us of this bump in the road.

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)

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.