Several of our friends have thought of ways to serve the kids at the cancer clinic. One friend brought over a huge bag of stuffed toys to donate to the kids. Another friend brought 2 large boxes of scholastic books that we took in. Friends from church made goodie bags and collected Santa hats. I posted photos HERE.
It's been fun for us to bring nice things for the other families who visit the clinic. It's been good for Jacob to be involved. Bringing your kindness to the clinic makes going much more tolerable.
Saturday, December 27, 2008
Friday, December 26, 2008
Friday is the New Wednesday
Chemo treatments need to be evenly spaced. So Wednesday was our routine chemo day. Over the last few months I noticed a trend within myself. My anxiety would start to rise on Tuesday. I'd be quite restless that night and then very moody, irritable, and anxious on Wednesday. I would try to breathe, relax, let it go. Whatever. It's still scary each week pumping your kid with these toxic "medicines." I don't know that I'll ever be "used to it," but we have decided that we've built a tolerance to it.
I'm not as big of a basket case. I usually can sleep the night before. It helps that Jacob is dealing with it better too. He openly admits that he doesn't love clinic day, but we no longer have to carry him to the car crying. He packs his Nintendo bag, gets his shoes on, collects a snack, etc. He does it all very SLOWLY, stalling like, but he does it.
There's nothing "normal" about the whole routine. I never want it to be normal because then perhaps we aren't taking it as seriously or being as cautious or being as grateful for all the perfect moments in between. I will tolerate that we have to live through this. I will be forever grateful for those friends who have cared week after week. I will be proud of Jacob - his courage, his character, his spirit, and his brave fight. I will continue to cling to my faith and be grateful that I can see the moments more clearly. I'll cherish the strength we've gained as a companionship and as a family. But I won't be grateful for cancer. It will remain my mortal enemy. I will always stand opposed to it. I'll always hope for a cure. I'll always pray that more children, more friends, more mothers or grandfathers will never have to know what it's like to live alongside cancer.
Now our clinic days have been moved to Friday. This made it so our treatments weren't on Christmas Eve or New Years Eve. Jon took Jake to the clinic today. We might actually LIKE Fridays. I don't think they are quite as crowded, maybe that was just this week. They left at 7:15 a.m. and were back around 2:30 p.m. - this was even a Count-Dependant treatment (have to wait for labs to come back to see if counts are up before they can give chemo).
Jacob is off riding his red bike with his red helmet with his red cheeks to match. We sent him out to play and breath some fresh air before the side effects kick in. Which reminds me, when do I need to give him more Zofran? Hopefully the barfing will be mild like last time. Only one more dose of Dactinomycin. The others are just Vincristine.
I'm not as big of a basket case. I usually can sleep the night before. It helps that Jacob is dealing with it better too. He openly admits that he doesn't love clinic day, but we no longer have to carry him to the car crying. He packs his Nintendo bag, gets his shoes on, collects a snack, etc. He does it all very SLOWLY, stalling like, but he does it.
There's nothing "normal" about the whole routine. I never want it to be normal because then perhaps we aren't taking it as seriously or being as cautious or being as grateful for all the perfect moments in between. I will tolerate that we have to live through this. I will be forever grateful for those friends who have cared week after week. I will be proud of Jacob - his courage, his character, his spirit, and his brave fight. I will continue to cling to my faith and be grateful that I can see the moments more clearly. I'll cherish the strength we've gained as a companionship and as a family. But I won't be grateful for cancer. It will remain my mortal enemy. I will always stand opposed to it. I'll always hope for a cure. I'll always pray that more children, more friends, more mothers or grandfathers will never have to know what it's like to live alongside cancer.
Now our clinic days have been moved to Friday. This made it so our treatments weren't on Christmas Eve or New Years Eve. Jon took Jake to the clinic today. We might actually LIKE Fridays. I don't think they are quite as crowded, maybe that was just this week. They left at 7:15 a.m. and were back around 2:30 p.m. - this was even a Count-Dependant treatment (have to wait for labs to come back to see if counts are up before they can give chemo).
Jacob is off riding his red bike with his red helmet with his red cheeks to match. We sent him out to play and breath some fresh air before the side effects kick in. Which reminds me, when do I need to give him more Zofran? Hopefully the barfing will be mild like last time. Only one more dose of Dactinomycin. The others are just Vincristine.
Wednesday, December 24, 2008
An Anniversary
Jacob pointed out that along with Christmas Eve we celebrate his 5 month anniversary. It's been 5 months since he had surgery to have his tumor removed. For Jacob, this is when everything began. Going to the doctor, going for an ultrasound, and even going to a second doctor on the same day because he had a tumor wasn't the starting point for him. All of this became VERY serious when he had to have SURGERY. He hated that.
For Jon & I it started on the first day the tumor was found. We worried about everything and tried to keep ourselves away from Google until we knew the exact diagnosis. We held our breath in anticipation for the changes that would surely come that we didn't understand. We waited for insurance approvals and paperwork. We called our families. We cried, we prayed, and we stayed together. Kisses on every head, every night.
Surgery day was a long day. Jacob needed to go fasting, so Jon offered to fast along with him. I didn't agree to those terms because I still needed to produce milk to pump for Jayson. Although, I might as well. I couldn't eat in front of Jacob and I couldn't leave his side. Our children were home with Sharon and Jon & I were with Jacob at the outpatient surgery center.
First we waited in the waiting room wondering why everyone else was there waiting for themselves or a loved one to be cut open. How many of us had tumors? Who needed a knee or shoulder patched up?
When we were brought through the double doors, I immediately noticed a painting hanging on the wall to the left. It was beautiful and prompted a silent prayer. It is by Nathan Greene called Chief of the Medical Staff (click image to learn more).
I really felt that we were placing our son in the Lord's hands. We were at the Adventist Hospital (where health and healing, respecting our bodies, and trusting the Savior are highly valued) with the Mormon doctor. I found great comfort that the Lord would send Dr. Chamberlain - someone who was well trained medically and also blessed with priesthood power. I knew that if anyone could receive heavenly guidance and power beyond his own to heal, it would be our doctor. We had an instant connection and we truly felt his concern for our Jacob. It was another way that the Lord showed Jon & I that he was caring for us and placing people in our path to help us.
Jacob was one of the older patients on the schedule, so his surgery time kept getting delayed. He really wanted to eat, but he tried to distract himself by watching Drake & Josh on tv. We played the dot game, figured out Sudoku puzzles, and rubbed Jacob's back.
Going in to anesthesia, Jacob chose to wear the bubble gum flavored mask to help put him under (the other option was to start an IV and inject him there. He liked the idea of not remembering the needle). Days later Jacob confessed that he was having nightmares that bad guys were trying to smuther him with a mask. It showed me just how scary it all was to him. On his port surgery he opted NOT to wear the mask, but preferred the IV.
Coming out of anesthesia was tough. The nurse had warned me that his emotions would be very raw. She said that she hadn't met a child how didn't cry his way out of anesthesia. I knew that Jacob would have a hard time waking up anyway. He regularly has night terrors and we can never wake him up. So we've seen him crying in his sleep before. This actually helped me to sense when he was really coherent and when he was still under the meds. He did cry with lots of tears. Sobbed with lots heart-tugging sound. He thrashed back and forth and I worried that he would rip the line out of his arm. Raw, tender emotion. Broke my heart to watch him go through it even though he wouldn't remember that part.
He was in pain initially. The meds worked quickly. His hunger returned. We sent the nurse to get the promised Big Stick Popsicle. He loved that. He was thrilled that they had apple juice too. But it was all too much too soon for his system that had just been doused with anesthesia. He threw up everywhere. Bright flying liquid all over him, his gown, the bed. After he was dried and changed, he ate another popsicle. Slower this time.
Jacob walked like a cowboy for a few days, but he didn't slow down. He took it easy for about a day and then he was ready to get back in the game. I worried about all the falls or hits that would be devastating. He wasn't allowed to continue sports or go to his swim lessons. The incision needed 3 weeks to heal before it could be submersed.
We did see a photo of the tumor - about 2-3 cm. It was bumpy almost like a grape cluster. At a follow up visit, Jacob was very interested in seeing the photo. Since then he was wondering if we could get a picture of it to go with all the pics I've been taking.
We went home from surgery day knowing that our boy just had cancer removed. The preliminary sample indicated rhabdomyosarcoma. We had nieve hopes that they could just take it out and we could be finished, maybe just keep an eye on it. But we've learned too much about this cancer. Even when tumors have been completely removed, there's an 80% chance of reocurrance without further treatment. It is standard protocol to undergo chemotherapy. The truth is that nearly all kids with rhabdomyosarcoma also are treated with radiation. There are few exceptions. Jacob's stage, type, and location was one of those exceptions.
Chemo has been hard for Jacob, but what he dreads most is SURGERY. I think that's why he takes such pride in his 5 month Anniversary.
For Jon & I it started on the first day the tumor was found. We worried about everything and tried to keep ourselves away from Google until we knew the exact diagnosis. We held our breath in anticipation for the changes that would surely come that we didn't understand. We waited for insurance approvals and paperwork. We called our families. We cried, we prayed, and we stayed together. Kisses on every head, every night.
Surgery day was a long day. Jacob needed to go fasting, so Jon offered to fast along with him. I didn't agree to those terms because I still needed to produce milk to pump for Jayson. Although, I might as well. I couldn't eat in front of Jacob and I couldn't leave his side. Our children were home with Sharon and Jon & I were with Jacob at the outpatient surgery center.
First we waited in the waiting room wondering why everyone else was there waiting for themselves or a loved one to be cut open. How many of us had tumors? Who needed a knee or shoulder patched up?
When we were brought through the double doors, I immediately noticed a painting hanging on the wall to the left. It was beautiful and prompted a silent prayer. It is by Nathan Greene called Chief of the Medical Staff (click image to learn more).
I really felt that we were placing our son in the Lord's hands. We were at the Adventist Hospital (where health and healing, respecting our bodies, and trusting the Savior are highly valued) with the Mormon doctor. I found great comfort that the Lord would send Dr. Chamberlain - someone who was well trained medically and also blessed with priesthood power. I knew that if anyone could receive heavenly guidance and power beyond his own to heal, it would be our doctor. We had an instant connection and we truly felt his concern for our Jacob. It was another way that the Lord showed Jon & I that he was caring for us and placing people in our path to help us.
Jacob was one of the older patients on the schedule, so his surgery time kept getting delayed. He really wanted to eat, but he tried to distract himself by watching Drake & Josh on tv. We played the dot game, figured out Sudoku puzzles, and rubbed Jacob's back.
Going in to anesthesia, Jacob chose to wear the bubble gum flavored mask to help put him under (the other option was to start an IV and inject him there. He liked the idea of not remembering the needle). Days later Jacob confessed that he was having nightmares that bad guys were trying to smuther him with a mask. It showed me just how scary it all was to him. On his port surgery he opted NOT to wear the mask, but preferred the IV.
Coming out of anesthesia was tough. The nurse had warned me that his emotions would be very raw. She said that she hadn't met a child how didn't cry his way out of anesthesia. I knew that Jacob would have a hard time waking up anyway. He regularly has night terrors and we can never wake him up. So we've seen him crying in his sleep before. This actually helped me to sense when he was really coherent and when he was still under the meds. He did cry with lots of tears. Sobbed with lots heart-tugging sound. He thrashed back and forth and I worried that he would rip the line out of his arm. Raw, tender emotion. Broke my heart to watch him go through it even though he wouldn't remember that part.
He was in pain initially. The meds worked quickly. His hunger returned. We sent the nurse to get the promised Big Stick Popsicle. He loved that. He was thrilled that they had apple juice too. But it was all too much too soon for his system that had just been doused with anesthesia. He threw up everywhere. Bright flying liquid all over him, his gown, the bed. After he was dried and changed, he ate another popsicle. Slower this time.
Jacob walked like a cowboy for a few days, but he didn't slow down. He took it easy for about a day and then he was ready to get back in the game. I worried about all the falls or hits that would be devastating. He wasn't allowed to continue sports or go to his swim lessons. The incision needed 3 weeks to heal before it could be submersed.
We did see a photo of the tumor - about 2-3 cm. It was bumpy almost like a grape cluster. At a follow up visit, Jacob was very interested in seeing the photo. Since then he was wondering if we could get a picture of it to go with all the pics I've been taking.
We went home from surgery day knowing that our boy just had cancer removed. The preliminary sample indicated rhabdomyosarcoma. We had nieve hopes that they could just take it out and we could be finished, maybe just keep an eye on it. But we've learned too much about this cancer. Even when tumors have been completely removed, there's an 80% chance of reocurrance without further treatment. It is standard protocol to undergo chemotherapy. The truth is that nearly all kids with rhabdomyosarcoma also are treated with radiation. There are few exceptions. Jacob's stage, type, and location was one of those exceptions.
Chemo has been hard for Jacob, but what he dreads most is SURGERY. I think that's why he takes such pride in his 5 month Anniversary.
Tuesday, December 23, 2008
No Chemo on Christmas Eve
Jacob is due for his make-you-barf chemo on Wednesday, Christmas Eve. But we have now switched his treatment days to Friday. So Merry Christmas - eat all the chocolate, candy canes, fancy cookies, & breads that you want - no barfing 'til Friday. From there Jacob has 3 more treatments into January, then scans. Assuming the scans are clear, he'll be considered Off Treatment (OT). Then we wait and hope it doesn't come back. We'll do follow-up scans in several months. His port won't come out for at least 3 months after treatment.
Sunday, December 14, 2008
Snap
"Mom, I can snap with my fingers now." Oh, the simple triumphs!!!! I'm so thankful that the Vincristine doesn't have as strong a hold on my son. I pray that it will kill the cancer cells and leave my little boys limbs alone.
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