For months before Clara was born, I’d had “sinus problems”. By November, I’d completely lost my sense of
taste and smell. And forget about
breathing through my nose. Click here to read more.
Monday, March 25, 2013
We Believe in Miracles: The Journey Part I
I want to start this post off with this picture of Cory and I at Ford's Theater...because I like it.
We saw "A Christmas Carol" with my parents and Scott and Brooke. A lovely, lovely time.
We want to detail the journey to my leukemia diagnosis as our testimony of the Lord's hand in our lives. We recognize the many tender mercies that were shown.
For months before Clara was born, I'd had "sinus problems". By November, I'd completely lost my sense of taste and smell. And forget about breathing through my nose. By December, the hearing in my left ear was impaired. I paid a visit to the ENT (Dr. Khanna -- click on the link and tell me he doesn't resemble Steve Carrell) to see if there was anything that could be done while I was pregnant. He gave me an antibiotic. When that didn't work, he offered a steroid to help with the inflammation. I declined and decided I'd just wait for this baby to be born to really attack it.
By the time Clara was born, the right side of my nose was really swollen and the hearing in my right ear was also impaired. I figured it was just a raging, untreated infection (we found out later, of course, this was the tumor). The rest of the story is best told as a series of tender mercies.
I paid another visit to Dr. Khanna four days after Clara was born. We recognize this as a blessing because it put me under the watchful eye of a doctor. Normally, I wouldn't be in such a hurry to rush off to doctors so soon after giving birth. But, between the swollen nose, loss of taste and smell, and the hearing going, I wanted some relief. I was nursing Clara, so I knew I was still somewhat limited in what could be done, but had more options than when pregnant. Dr. Khanna prescribed a steroid and sent me for a CT scan of my sinuses. Two days later, I started having earaches. I was miserable. I returned for a follow-up visit where Dr. Khanna reviewed my CT scans (my sinuses, particularly the right side, were a mess of polyps and other junk) and attempted to do a myringotomy. This is a procedure to drain fluid from the ear. My hearing was very impaired at this point. I couldn't hear my kids unless they spoke right in my ear and Cory had to yell at me. He wasn't able to drain any fluid because my ears were so inflamed and one side had a polyp. I was really disappointed because I'd been hoping for some relief from the earache and hearing loss. He sent me home with a different steroid. The next day, my right eye started to swell. I called him that evening to ask if it could be a reaction to the steroid but he didn't think so. The next morning, I looked like this:
And I felt miserable. I can't really describe what felt miserable; it wasn't like my throat hurt or my stomach was upset. I had a pounding headache that lasted until the first surgery. It was all I could do to sit myself up to nurse Clara.
The morning my eye swelled shut was the morning my mom came into town. We recognize this as a huge blessing. We picked the date (January 31, Clara's due date) in November for her to come help with the baby. Since I'd had 3 early babies, we'd hoped the baby would be here by that time. Sure enough, she was!
Cory took a picture and went into Dr. Khanna's office to show him. He had Cory make an appointment to bring me in the following day (Friday February 1). I continued to feel horrible the rest of Thursday. I told my mom and Cory I thought I was dehydrated. I was trying to drink and eat to have enough to make milk for Clara, but I did not have an appetite at all. That night, Cory called the Bishop -- the ecclesiastical leader for our church congregation -- to help him administer a priesthood blessing. I just lay in bed as they placed their hands on my head to administer a blessing from my Heavenly Father. Even though they were standing right over me, I couldn't hear a word of what was said, but I could feel the power of faith. My mom and Cory told me the words that were said. Among many other things, I was admonished to be patient. More immediately, I was blessed to be able to sleep that night...which I did.
We went to Dr. Khanna's office -- me semi-comatose -- the next day. He tried again to relieve some pressure from my ears, and then told Cory he needed to get me to the hospital and we'd do surgery the next day. We went home to get some personal things and I nursed my baby for what would be the last time. It's hard to explain how difficult it was to leave my kids, and especially my not quite two-week old baby, for the unknown. I didn't know what was wrong with me, I didn't know when I would be back. The Lord's tender mercy in having my mom here was no small thing. While I did not want to leave her, there is no one else I could imagine taking care of her if it couldn't be me or Cory. As those days turned into a week in the hospital, I missed her and worried that she wouldn't know who I was. I worried that I wouldn't be able to nurse her again. But, I never worried that she wasn't being completely taken care of and loved. My mom took on the role of mom again as she took care of my 4 kids so Cory could be with me during the day at the hospital. I cannot adequately express to her or my Heavenly Father my gratitude for that. And, as I've worried about my kids through this whole process, the spirit has whispered to me that they were His before they were mine and He would take care of them. The Lord is ever mindful of and taking care of our family.
Cory took me to the ER and, once I was in a room, he went back home late that night and returned in the morning. I vividly remember being in pre-op the next day, not being able to hear anyone as they'd come talk to me (nurses, anesthesiologists, etc.) and looking to Cory to interpret. He'd either tell me in a voice I could hear, or type it on his phone. I felt so horrible and it was taking so long...I asked Cory to stroke my arm to help me relax. This was the man who helped me relax through 4 labors, and he did it again. I was in much more need of mental and physical relaxation at this point, and having him there holding my hand and stroking my arm allowed me to finally fall asleep. It was a deep enough sleep that I was startled awake when the nurse came in to wheel me to the OR. I think I will always remember and treasure that simple yet powerful experience. Cory was my rock that whole week in the hospital (and always). Dare I say it was one of the most romantic times in our marriage. Romance is not what is depicted in movies. It's fun to watch and makes us feel good, but having my husband right at my side, administering priesthood blessings and holding my hand as we faced one of the most scary things of our lives, was beyond romantic.
After surgery (Saturday morning), Dr. Khanna told us I'd probably go home Monday. Great! My eye, though still swollen shut, wasn't as red and swollen. Sunday morning we had a visit from the infectious disease doctor (What? Why were we getting a visit from her?), who wasn't so sure I'd be leaving so soon. She was concerned about the eye. Another CT scan was ordered, and they found there was an abscess behind the eye. And so began the search for a hospital with an ocuplastic surgeon. By Monday evening it was decided I'd be transferred to George Washington University Hospital in DC. About 9:30 that night, Cory left me for my ambulance ride to DC while he went back home.
The swollen eye was absolutely a tender mercy that saved my life. And, the location of the abscess was a blessing. If my eye hadn't swollen, there would not have been a rush for the first surgery. Had we not done the first surgery, there wouldn't have been pathology to send out to find the cancer. Had the abscess been slightly in a different direction, we wouldn't have known about it until I went blind, or it affected my brain. We know the Lord was taking care of the details.
We saw "A Christmas Carol" with my parents and Scott and Brooke. A lovely, lovely time.
For months before Clara was born, I'd had "sinus problems". By November, I'd completely lost my sense of taste and smell. And forget about breathing through my nose. By December, the hearing in my left ear was impaired. I paid a visit to the ENT (Dr. Khanna -- click on the link and tell me he doesn't resemble Steve Carrell) to see if there was anything that could be done while I was pregnant. He gave me an antibiotic. When that didn't work, he offered a steroid to help with the inflammation. I declined and decided I'd just wait for this baby to be born to really attack it.
By the time Clara was born, the right side of my nose was really swollen and the hearing in my right ear was also impaired. I figured it was just a raging, untreated infection (we found out later, of course, this was the tumor). The rest of the story is best told as a series of tender mercies.
I paid another visit to Dr. Khanna four days after Clara was born. We recognize this as a blessing because it put me under the watchful eye of a doctor. Normally, I wouldn't be in such a hurry to rush off to doctors so soon after giving birth. But, between the swollen nose, loss of taste and smell, and the hearing going, I wanted some relief. I was nursing Clara, so I knew I was still somewhat limited in what could be done, but had more options than when pregnant. Dr. Khanna prescribed a steroid and sent me for a CT scan of my sinuses. Two days later, I started having earaches. I was miserable. I returned for a follow-up visit where Dr. Khanna reviewed my CT scans (my sinuses, particularly the right side, were a mess of polyps and other junk) and attempted to do a myringotomy. This is a procedure to drain fluid from the ear. My hearing was very impaired at this point. I couldn't hear my kids unless they spoke right in my ear and Cory had to yell at me. He wasn't able to drain any fluid because my ears were so inflamed and one side had a polyp. I was really disappointed because I'd been hoping for some relief from the earache and hearing loss. He sent me home with a different steroid. The next day, my right eye started to swell. I called him that evening to ask if it could be a reaction to the steroid but he didn't think so. The next morning, I looked like this:
The morning my eye swelled shut was the morning my mom came into town. We recognize this as a huge blessing. We picked the date (January 31, Clara's due date) in November for her to come help with the baby. Since I'd had 3 early babies, we'd hoped the baby would be here by that time. Sure enough, she was!
Cory took a picture and went into Dr. Khanna's office to show him. He had Cory make an appointment to bring me in the following day (Friday February 1). I continued to feel horrible the rest of Thursday. I told my mom and Cory I thought I was dehydrated. I was trying to drink and eat to have enough to make milk for Clara, but I did not have an appetite at all. That night, Cory called the Bishop -- the ecclesiastical leader for our church congregation -- to help him administer a priesthood blessing. I just lay in bed as they placed their hands on my head to administer a blessing from my Heavenly Father. Even though they were standing right over me, I couldn't hear a word of what was said, but I could feel the power of faith. My mom and Cory told me the words that were said. Among many other things, I was admonished to be patient. More immediately, I was blessed to be able to sleep that night...which I did.
We went to Dr. Khanna's office -- me semi-comatose -- the next day. He tried again to relieve some pressure from my ears, and then told Cory he needed to get me to the hospital and we'd do surgery the next day. We went home to get some personal things and I nursed my baby for what would be the last time. It's hard to explain how difficult it was to leave my kids, and especially my not quite two-week old baby, for the unknown. I didn't know what was wrong with me, I didn't know when I would be back. The Lord's tender mercy in having my mom here was no small thing. While I did not want to leave her, there is no one else I could imagine taking care of her if it couldn't be me or Cory. As those days turned into a week in the hospital, I missed her and worried that she wouldn't know who I was. I worried that I wouldn't be able to nurse her again. But, I never worried that she wasn't being completely taken care of and loved. My mom took on the role of mom again as she took care of my 4 kids so Cory could be with me during the day at the hospital. I cannot adequately express to her or my Heavenly Father my gratitude for that. And, as I've worried about my kids through this whole process, the spirit has whispered to me that they were His before they were mine and He would take care of them. The Lord is ever mindful of and taking care of our family.
Cory took me to the ER and, once I was in a room, he went back home late that night and returned in the morning. I vividly remember being in pre-op the next day, not being able to hear anyone as they'd come talk to me (nurses, anesthesiologists, etc.) and looking to Cory to interpret. He'd either tell me in a voice I could hear, or type it on his phone. I felt so horrible and it was taking so long...I asked Cory to stroke my arm to help me relax. This was the man who helped me relax through 4 labors, and he did it again. I was in much more need of mental and physical relaxation at this point, and having him there holding my hand and stroking my arm allowed me to finally fall asleep. It was a deep enough sleep that I was startled awake when the nurse came in to wheel me to the OR. I think I will always remember and treasure that simple yet powerful experience. Cory was my rock that whole week in the hospital (and always). Dare I say it was one of the most romantic times in our marriage. Romance is not what is depicted in movies. It's fun to watch and makes us feel good, but having my husband right at my side, administering priesthood blessings and holding my hand as we faced one of the most scary things of our lives, was beyond romantic.
After surgery (Saturday morning), Dr. Khanna told us I'd probably go home Monday. Great! My eye, though still swollen shut, wasn't as red and swollen. Sunday morning we had a visit from the infectious disease doctor (What? Why were we getting a visit from her?), who wasn't so sure I'd be leaving so soon. She was concerned about the eye. Another CT scan was ordered, and they found there was an abscess behind the eye. And so began the search for a hospital with an ocuplastic surgeon. By Monday evening it was decided I'd be transferred to George Washington University Hospital in DC. About 9:30 that night, Cory left me for my ambulance ride to DC while he went back home.
The swollen eye was absolutely a tender mercy that saved my life. And, the location of the abscess was a blessing. If my eye hadn't swollen, there would not have been a rush for the first surgery. Had we not done the first surgery, there wouldn't have been pathology to send out to find the cancer. Had the abscess been slightly in a different direction, we wouldn't have known about it until I went blind, or it affected my brain. We know the Lord was taking care of the details.
Sunday, March 24, 2013
10 things cancer can NOT do
I'm pretty sure we all thing of cancer as a big, huge horrible thing that can conquer many people. I did too, until my mom received this card from my aunt Julia. The card listed 10 things that cancer can NOT do. They are as follows:
1. It can't cripple love
2. It can't shatter hope
3. It can't corrode faith
4. It can't destroy peace
5. It can't kill friendship
6. It can't suppress memories
7. It can't silence courage
8. It can't invade the soul
9. It can't steal eternal life
10. It can't conquer the spirit
So in conclusion of this list, I would just like to say: Cancer is very limited. This was a great message to me and it brought me more hope that we can get through this, and it also brought reassurance to all who read it.
I still know we can fight through this.
Lucas
1. It can't cripple love
2. It can't shatter hope
3. It can't corrode faith
4. It can't destroy peace
5. It can't kill friendship
6. It can't suppress memories
7. It can't silence courage
8. It can't invade the soul
9. It can't steal eternal life
10. It can't conquer the spirit
So in conclusion of this list, I would just like to say: Cancer is very limited. This was a great message to me and it brought me more hope that we can get through this, and it also brought reassurance to all who read it.
I still know we can fight through this.
Lucas
Friday, March 22, 2013
Since Being Home
I would have been just coming home from the hospital today. It would've been incredibly difficult for all of us if I was still there. I'm grateful Heavenly Father inspired a concerned and caring doctor to let me go home after we were done with the chemo.
Dr.El-Shami (my oncologist) has told me several times how unusual and risky it was to let me go home. But, he did it because I've got a family at home and he knew we all needed each other. I've had to return to his clinic twice a week to have my blood drawn. As expected, my white blood cell count was down and my immune system shot. He warned me several times to go right to the ER with a fever, diarrhea, etc. In fact, he fully expected me to get a fever last week. Between the priesthood blessing Cory gave me and the careful hand washing we've all been doing, I've been able to surprise him with no fever.
I have had to have 3 transfusions. The first time was just a platelet transfusion. The 2nd time, I needed both blood and platelets. I got through the first unit of blood and a unit of platelets when I started to itch on my trunk. The nurse asked if it was normal itchy. I thought maybe it was just from hair (my hair had started falling out the day before), but it started spreading. She turned off the platelets and called the doctor. My bottom lip started to swell and I broke out in hives from my neck to my toes. I was itching like CRAZY! I felt so bad for all the times I've told my kids not to scratch their eczema. The doctors came in and gave me more benadryl (I'd taken some before started the transfusion as a precaution) and some steroid in my picc line. The reaction made me really nervous. I called my dad and said a lot of prayers to help me to be OK and to feel calm. Within half an hour, the itching subsided, my rush of adrenaline slowed down, and I was able to go to sleep. I emailed Dr. El-Shami (this was all done overnight in the hospital) to let him know what happened, and that it really freaked me out. This was his response:
Hi Janna, Thanks for keeping me in the loop. Transfusion reactions are not uncommon. And I apologize for not having counseled you in advance on such reactions. Blood transfusion is essentially an organ transplantation and immune-mediated reactions are not uncommon. The vast majority though are benign and respond well to steroids and antihistamines (as the one you had yesterday did). So do not worry. Everything is under control. This may not be the last transfusion reaction you have, but then again, nothing that we cannot take care of. Hope your weekend is relaxing and enjoyable. See you on Tuesday.
I was able to go home the next morning. That day (Saturday), I felt the best I have for weeks. Getting some new blood really helped! I didn't get lightheaded every time I moved, my head wasn't spinning, I felt more energetic. My mom and I took Clara for a walk and that felt WONDERFUL. I also had more of an appetite than I have for a long time. Not only did I want to eat, but it didn't hurt my mouth. By Tuesday, I was feeling slightly less energetic and somewhat headachey. I ended up needing another platelet transfusion. Since then, I've continued to feel better. My appetite kind of ebbs and flows, but it's been on the up again the last few days. I went in today for another blood check and, while my levels (white blood cells, hemoglobin, and platelets) haven't fully recovered, they are moving up. Fortunately, they've recovered enough that I didn't have to stay for a transfusion, but not enough that I have an immune system. Thankfully, I really feel pretty darn good; close to normal!
When we met with the doctor on Tuesday, I finally showed him a picture of my kids (why haven't I done that before?!). He smiled and said, "Yes, you needed to be home with them." I told him how healing it's been for all of us for me to be home and he said, "And you need to know it has been for me, too." We feel grateful that he has been so mindful of us and our situation; not just shuttling me through as a patient, but helping a family.
I have had to have 3 transfusions. The first time was just a platelet transfusion. The 2nd time, I needed both blood and platelets. I got through the first unit of blood and a unit of platelets when I started to itch on my trunk. The nurse asked if it was normal itchy. I thought maybe it was just from hair (my hair had started falling out the day before), but it started spreading. She turned off the platelets and called the doctor. My bottom lip started to swell and I broke out in hives from my neck to my toes. I was itching like CRAZY! I felt so bad for all the times I've told my kids not to scratch their eczema. The doctors came in and gave me more benadryl (I'd taken some before started the transfusion as a precaution) and some steroid in my picc line. The reaction made me really nervous. I called my dad and said a lot of prayers to help me to be OK and to feel calm. Within half an hour, the itching subsided, my rush of adrenaline slowed down, and I was able to go to sleep. I emailed Dr. El-Shami (this was all done overnight in the hospital) to let him know what happened, and that it really freaked me out. This was his response:
Hi Janna, Thanks for keeping me in the loop. Transfusion reactions are not uncommon. And I apologize for not having counseled you in advance on such reactions. Blood transfusion is essentially an organ transplantation and immune-mediated reactions are not uncommon. The vast majority though are benign and respond well to steroids and antihistamines (as the one you had yesterday did). So do not worry. Everything is under control. This may not be the last transfusion reaction you have, but then again, nothing that we cannot take care of. Hope your weekend is relaxing and enjoyable. See you on Tuesday.
I was able to go home the next morning. That day (Saturday), I felt the best I have for weeks. Getting some new blood really helped! I didn't get lightheaded every time I moved, my head wasn't spinning, I felt more energetic. My mom and I took Clara for a walk and that felt WONDERFUL. I also had more of an appetite than I have for a long time. Not only did I want to eat, but it didn't hurt my mouth. By Tuesday, I was feeling slightly less energetic and somewhat headachey. I ended up needing another platelet transfusion. Since then, I've continued to feel better. My appetite kind of ebbs and flows, but it's been on the up again the last few days. I went in today for another blood check and, while my levels (white blood cells, hemoglobin, and platelets) haven't fully recovered, they are moving up. Fortunately, they've recovered enough that I didn't have to stay for a transfusion, but not enough that I have an immune system. Thankfully, I really feel pretty darn good; close to normal!
When we met with the doctor on Tuesday, I finally showed him a picture of my kids (why haven't I done that before?!). He smiled and said, "Yes, you needed to be home with them." I told him how healing it's been for all of us for me to be home and he said, "And you need to know it has been for me, too." We feel grateful that he has been so mindful of us and our situation; not just shuttling me through as a patient, but helping a family.
 |
| Janna and Clara |
Wednesday, March 20, 2013
More good news
This is an email we received from Cory this morning. Prayers are being answered.
Janna received another platelet transfusion yesterday. What should be a 3 hour total process turned into 10 hour process. Apparently there are lots of people who needed blood yesterday so Janna had to wait in line, although her oncologist was not too happy about it.
We also learned a bit more about her future yesterday. The Oncologist (Dr. Khalid El-Shami - awesome doctor, by the way - if you ever have cancer, he's the guy to see :) ), said that should the pet scan and MRI show that the tumor is in complete remission (which is what induction chemo is meant to do to tumors), she may not need a bone marrow transplant. But if there is any sign of it, he would highly recommend a bone marrow transplant as that gives her the best chances of surviving. She is doing remarkably well, so we're hopeful that the transplant will not be necessary. She will also undergo ten treatments of radiation therapy in either April or May, but he said this was relatively simple with little to no side effects.
The good news is that IF the tumor is in remission, she will only need two more rounds of chemo, at the beginning of April and May. These are still not "normal" rounds, since she is getting 5 treatments in 5 days each month. This is a change from what we were originally told when we started down this road - we thought she may need chemo treatments until August.
Dr. El-Shami said yesterday that Janna's situation is very unique. He wants to write her up for journal articles - there's not too many cases, if any, like her. I believe she told her last Friday that her cancer diagnosis is very strange - he said it would be like telling someone that they have stomach cancer but it's in their liver.
Just this morning Janna said she couldn't feel the tumor anymore. As I look back on pictures of her just before she went in for her induction chemo, you can definitely tell something was there. It restricted her ability to smile. I'll share the picture with everyone later.
Thanks again for all your prayers and efforts to serve our family - it is all very much appreciated!
Janna received another platelet transfusion yesterday. What should be a 3 hour total process turned into 10 hour process. Apparently there are lots of people who needed blood yesterday so Janna had to wait in line, although her oncologist was not too happy about it.
We also learned a bit more about her future yesterday. The Oncologist (Dr. Khalid El-Shami - awesome doctor, by the way - if you ever have cancer, he's the guy to see :) ), said that should the pet scan and MRI show that the tumor is in complete remission (which is what induction chemo is meant to do to tumors), she may not need a bone marrow transplant. But if there is any sign of it, he would highly recommend a bone marrow transplant as that gives her the best chances of surviving. She is doing remarkably well, so we're hopeful that the transplant will not be necessary. She will also undergo ten treatments of radiation therapy in either April or May, but he said this was relatively simple with little to no side effects.
The good news is that IF the tumor is in remission, she will only need two more rounds of chemo, at the beginning of April and May. These are still not "normal" rounds, since she is getting 5 treatments in 5 days each month. This is a change from what we were originally told when we started down this road - we thought she may need chemo treatments until August.
Dr. El-Shami said yesterday that Janna's situation is very unique. He wants to write her up for journal articles - there's not too many cases, if any, like her. I believe she told her last Friday that her cancer diagnosis is very strange - he said it would be like telling someone that they have stomach cancer but it's in their liver.
Just this morning Janna said she couldn't feel the tumor anymore. As I look back on pictures of her just before she went in for her induction chemo, you can definitely tell something was there. It restricted her ability to smile. I'll share the picture with everyone later.
Thanks again for all your prayers and efforts to serve our family - it is all very much appreciated!
Tuesday, March 19, 2013
Losing Her Hair
This entire process has felt like a dream. Things have happened so fast that things don't seem real. I'm still waiting for someone to give us a call and say, "Well, we made a mistake. Janna doesn't really have leukemia." I know everyone who has a loved one battling cancer has probably thought the same thing, but when you see Janna - and hear of how healthy her bone marrow seems to be, how healthy her heart is...how healthy she is EXCEPT for this little thing called Leukemia, which, by the way, doesn't show itself in any physical way - it hasn't seemed real. Until today.
Janna is losing her hair. It started slowly, with strands of hair on her pillow, on her clothes and in the shower. But in the last 24 hours, it's really started to come out in large clumps. Now, all this means is that she is healing, that the chemo is doing it's job. It doesn't mean she is any more sick than she was when she started - to the contrary, she's better now than she was when she started. But, it's really the first and only physical manifestation of her battle with cancer. Even the picc line she has came before she was diagnosed (from the surgeries she had a week before she was diagnosed).
I love her more than anything, and losing her hair won't change that. It won't change the way the boys adore her either (ok, Clara too). But it has hit home a bit. My wife has cancer.
Janna is losing her hair. It started slowly, with strands of hair on her pillow, on her clothes and in the shower. But in the last 24 hours, it's really started to come out in large clumps. Now, all this means is that she is healing, that the chemo is doing it's job. It doesn't mean she is any more sick than she was when she started - to the contrary, she's better now than she was when she started. But, it's really the first and only physical manifestation of her battle with cancer. Even the picc line she has came before she was diagnosed (from the surgeries she had a week before she was diagnosed).
I love her more than anything, and losing her hair won't change that. It won't change the way the boys adore her either (ok, Clara too). But it has hit home a bit. My wife has cancer.
Monday, March 18, 2013
Fundraiser
There are so many people out there who are helping Janna and Cory and their family in so many ways. We are truly grateful for those who are helping make their burden lighter. Cancer knows no bounds when it invades someone's life. It impacts every aspect with no regards to privacy. We know the medical bills will start coming in and we want to be able to help cover any expenses so that is one less thingJanna and Cory have to carry. Whatever you can give is wonderful. Thank you to all of you who have helped so far in so many ways. It has been such a blessing and a testimony to how wonderful people are.
How to help
How to help
Sunday, March 17, 2013
My Mom's Battle is My Battle
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My mom is right now going through cancer. I really felt like I had to share my opinion on what's happening in my family. Even though we are going through hard times, I think we can push through this. But, along the way, we will have more challenges. But we have still been blessed in many ways; my mom recently came home about 2 weeks earlier than expected. Even though we have to be VERY careful, the doctors knew she had us children at home and let her go. And while this may sound weird, her infection was also a blessing; without it, the doctors would have never found out about her cancer. Modern technology is also a blessing; the doctors use it to help my mom with her treatments, and also when she was in the hospital we talked to her using skype. It's also a blessing that my mom had Clara before she had her infection and cancer, or else we might not have Clara right now. We are all very grateful for these blessings and for all of you who are helping us. With all these things going on, I still believe we can push through this. We have things that keep us going. For example, one thing that pushes me through is that I know that after all of these things, my mom will be perfectly fine. I also have other fun things going on that help me stay happy. For example, baseball. I love baseball, and also I have some fun field trips coming up. We all know we can push through this, and we know in the end it will all be okay. :)
-Lucas
Sunday, March 10, 2013
By Way of Update...
I am so grateful to be typing this update from my bedroom! I can't imagine still being in the hospital. My oncologist, Dr. El-Shami, has been very aware of and sensitive to the fact that I have young kids at home. I know that is why he allowed me to come home early. Of course, I'm under strict orders to return immediately to the ER at any sign of a fever or sickness. And, I'm returning to his outpatient clinic twice a week to check my CBC. I returned Friday for my first follow-up and, as expected, my numbers are declining. My white blood cell count was really low and my red blood cells and platelets continue to drop. I will go back again on Tuesday. If I get too low, they'll send me over to GW hospital (which is just across the street from his clinic) for a few hours for a blood transfusion.
In the meantime, we have to be very careful about germs. Because they pumped so much chemo into me over such a short period of time (I was on chemo for about 6 hours a day for 5 days), my immune system is "out to lunch", as Dr. El-Shami puts it. There has been a lot of hand-washing at our house and I'm semi-quarantined to the bedroom, particularly as my numbers continue to drop. I'm also on what's called a neutropenic (all these fun vocabulary words we're learning!) diet, meaning no fresh fruits or vegetables, due to the bacteria they might carry. No flowers in the house, either. My cousins sent me some fabric flowers and a friend drew a beautiful bouquet for me. :)
Today I feel much more weak than I have, due of course to my declining red blood cell count. I'm grateful for good anti-nausea medication. They pumped it into my IV for half an hour before each chemo treatment and sent me home with an oral pill. My appetite waxes and wanes, but is overall much better than it was in the hospital. Who would have an appetite on hospital food, chemo or not?! Blech.
Here's one meal from the hospital. That green thing was broccoli in a former life. The red liquid was supposed to be tomato soup...I think they just gave me a can of tomato paste. *shudder*
Food, among many, many other things, is much better at home.
In the meantime, we have to be very careful about germs. Because they pumped so much chemo into me over such a short period of time (I was on chemo for about 6 hours a day for 5 days), my immune system is "out to lunch", as Dr. El-Shami puts it. There has been a lot of hand-washing at our house and I'm semi-quarantined to the bedroom, particularly as my numbers continue to drop. I'm also on what's called a neutropenic (all these fun vocabulary words we're learning!) diet, meaning no fresh fruits or vegetables, due to the bacteria they might carry. No flowers in the house, either. My cousins sent me some fabric flowers and a friend drew a beautiful bouquet for me. :)
Today I feel much more weak than I have, due of course to my declining red blood cell count. I'm grateful for good anti-nausea medication. They pumped it into my IV for half an hour before each chemo treatment and sent me home with an oral pill. My appetite waxes and wanes, but is overall much better than it was in the hospital. Who would have an appetite on hospital food, chemo or not?! Blech.
Food, among many, many other things, is much better at home.
We Believe in Miracles: Clara's Birth
As we reflect on the whirlwind that has been for the past month and a half, we have been able to see our Heavenly Father and Savior's hands every step of the way. The first blessing was the healthy, safe birth of Miss Clara Elizabeth.
My 3 previous babies had all come within a few days of hitting week 38. So, while I knew babies come when they will and I couldn't count on this one coming early, I thought I had a pretty good track record. Saturday January 19, at 38 weeks and 2 days, I had my first signs of early labor. I had gone to an ill-fated lunch with my sister in law Brooke. Long story short, we had to end up settling for a quick 15-minute sandwich at a no-name yucky place. Don't get me wrong, no-name places can turn out to be diamonds in the rough...not this one. Brooke and I still want a do-over on that outing. We headed back to their place, where Scott was watching my kids, and got ready to go back in our direction for Gabriel and Lincoln's basketball game. I noticed a little bit of bloody show, which is how my labor with McKay had started. I figured I had the rest of the day of early labor stuff, and then things would kick in that night and we'd have a baby. Since McKay's was so fast, I was pretty cocky this time around. I got a bit of adrenaline and was nervous to drive myself, so Scott drove his car with their kids and Brooke drove my car with me (Coach Cory was waiting at the basketball game). Half of the kids went to the basketball game and the other half came to our house with Brooke and me. I took a shower while Brooke watched the kids. I was having irregular, mild contractions. Nothing big. The Rasmussen's stayed for dinner that night, and then they decided to take our kids to their house for the night...because, remember, this baby was supposed to come fast once active labor kicked in?!
I woke up the next morning...no baby. Weird. So, I guess it wasn't going to be just like McKay's, but we still figured it would go fast when it kicked in. Scott and Brooke still had our kids (such a blessing), so we spent Sunday taking walks, playing games, watching "The District" on BYU TV, sitting on the birth ball...all the while thinking this labor would kick in at any moment! Looking back, I'm really grateful for that quiet day Cory and I spent together. Very grateful. I kept having contractions, some that made me stop, but nothing regular. We decided to get our kids back since baby was not in a hurry.
I woke up about 2:00 Monday morning (January 21) with contractions. They kept me awake and weren't going away, so after about an hour I woke up Cory. He started making phone calls -- the midwife and birth assistant, and our friend Danelle to come be with the kids (I'd warned her I always end up going into active labor in the middle of the night). The midwife on call lived in Maryland, about 30-40 minutes from the Birth Center; we live about 10 minutes from it. I panicked that we'd get there before her -- because, remember? This baby was going to come fast now that I was in active labor. She called the back up midwife, who lived nearby, to meet us there until she got there. Danelle came over in record time and we took off about 3:30am for the birth center. Kelly, the nearby midwife, and our birth assistant Aimee met us at the birth center. I was still fairly pleasant between contractions, so I was just anticipating a change in direction any minute. Jennifer, the main midwife on call, got there right away. I was still having contractions, but they were very erratic. And, my water hadn't broken yet. I figured once that happened, things would move fast. Per our wishes, Jennifer and Aimee gave us our space to labor together. I rely on Cory to help me through labor. They'd come in every 15 minutes to check the baby's heart tones, but other than that gave us our space. As the morning went on, Cory and I were baffled that things weren't happening as fast as we thought. My contractions weren't getting longer, stronger, and closer together. In fact, as the sun started to come up, I remember thinking, "Where is this baby?!"I hadn't had an exam yet and, finally, around 9:30 am (I think), the midwife offered to do one. I was hesitant because I didn't want to be disappointed, but agreed to it as long as she didn't tell me any numbers. After checking, she told me I was definitely in active labor (Cory and I were honestly thinking of going back home), but that the baby's chin wasn't tucked, which meant its little head wasn't putting as direct pressure on my cervix as it would otherwise. Honestly, at this point, my pride was a little hurt. I'd had 3 babies and I teach childbirth classes...shouldn't I know when I'm in labor?! Once again, reflecting back, I think the Lord was teaching me patience, which would be a recurring theme over the next weeks and months.
In order to help the baby turn in a more favorable position, they had me kneel on the bed with my rear in the air and my chest on the bed. This could allow the baby to shift back, then re-settle into a chin-tucked position. ( Oh, and by the way, I found out later I was 5 cm dilated and 70% effaced at this point.) I stayed in that position for a good 30 minutes. We decided to go for a walk outside and get a little something to eat. We walked across the street to get a breakfast burrito at Subway, and I started having contractions about every 2-3 minutes. Getting some food and fresh air was great. It would have been more pleasant to keep walking outside for a bit, but it was hard to relax through contractions when I was shivering from cold. For the next several hours, Cory and I worked together as contractions continued about 2-3 minutes apart. He was my rock; I completely relied on him as he helped me through my labor, one contraction at a time. I took a shower, sat on the birth ball, walked up and down stairs two at a time sideways...all hoping to help this baby get in the best position. About 1:00 pm the contractions started to feel different and were double peaking or coming right on top of one another. I lay on the queen size bed and Cory laid next to me as we worked to finally meet our new baby. With my first push, my water broke and splashed the midwife. They helped me to hold back a little bit so as to avoid tearing, and within another push or two Clara was here!
They laid her on my chest and covered us both with a blanket.Labor is amazing. There is nothing like the feeling of pain and intensity that comes just before you welcome a baby into the world, because as soon as that little one is laid on you, all that happened before is forgotten. Cory and I kissed and welcomed our new little one to the world. It was a minute or two before we lifted the blanket to reveal the gender...and Cory and I both just stared. Both of us fully expected a boy and we honestly didn't know what we were looking at! Neither of us said anything until the Birth Assistant, Aimee, finally clued in these clueless parents: "It's a girl!" We laughed and immediately started calling her Clara.
About 3 hours later, we brought Clara home. We took a nap before Brooke bought the boys home to meet her. She had taken them to pick out some gifts, and they were so excited to present her with a fuzzy pink blanket, a set of monkey hat and slippers, and some hair bows. From the moment they met her, these boys fell in love with their little sister.
We were now a family of 6!
We are so grateful for this first miracle in our journey. We are thankful I was able to carry Clara full-term and that she was born healthy and without complications. A few weeks before she was born, I told Cory that I felt like this baby would bring a spirit into our home that we needed. I had no idea just how much that would be needed! I am grateful I was diligent about eating healthy and exercising throughout my pregnancy. I know Heavenly Father was helping me prepare to not only have a healthy birth and baby, but also to endure what was to come.
Wednesday, March 6, 2013
Coming Home...
A three-week hospital stay today turned into a 6 day hospital stay. Janna is very healthy (relatively speaking) and was able to withstand the chemo effects well. This being said, the doctors believe her blood counts (platelets, hemoglobin, white blood cells, etc.) will plummet over the next couple of days due to the collective impact of receiving numerous chemo treatments over a very short period of time. But, so long as she visits the Oncologist two to three times a week to check her blood levels, doesn't get sick over the net week or so and receives transfusions as needed, she should be able to stay home for the next while. So while we're still playing the waiting game in regards to the genetic tests being done on tumor samples to determine its severity (and whether or not she may need a bone marrow transplant) and on if the chemo will have done it's job and sent the cancer into remission, we can play the game at home.
More to come soon.
More to come soon.
Monday, March 4, 2013
An Update from March 4
A bit of good news this morning. Janna will be done with chemo by tomorrow evening. We misunderstood how long she’s to be on it. But, her right side of her face is pretty swollen, including her eye almost being swollen shut. Oncologist said it was the tumor melting away. I guess it turns into fluid and needs to drain out somehow. But, the eye doc will be by today to check on her. She’s a trooper. After tomorrow, the waiting game begins.
It was originally going to be 7 days of chemo, but they gave her both chemo drugs at the same time, so it turned into 4 days. She’s taking a beating, but she’s really healthy (relatively speaking), so they could do it this way. Not sure what this does to the timeline. It might be the same. She’s going to still feel pretty yucky for the next week. Her blood counts should still be low for another week-and-a-half (so we’re told).
We’re kind of entering the critical zone right now – she is susceptible to getting really sick with anything, even a minor cold. The issue is that I could be a carrier and not know it since my body is fighting it off.
Also, we’re waiting to see how the tumor responds to the chemo. I don’t think we’ll know for sure until we get the MRA and PET scan. We’re far from out of the woods yet, but we’re making headway. They’ll give her a blood transfusion if necessary. So far her blood levels have been pretty good, but we’re told that they plummet a few days after chemo ends. It’s a cumulative effect. So, she’s just at the front end of getting to the point where she has no immune system.
(At 2:30 EST, Cory said): Chemo is taking its toll today. I’ve been here 4 hours and she’s been asleep for most of it. The chemo is administered twice a day, with the last treatment tomorrow (Tuesday) morning.
Another update: About 2 weeks after starting chemo is when her blood count will plummet. They just monitor her closely and give her a blood transfusion if necessary.
Sunday, March 3, 2013
Day 3 of 21
It was a difficult week this past week, preparing to say goodbye to Janna for 3 weeks. I (Cory) can visit with her, but the boys and Clara are not allowed to visit, although we might be able to pull some strings during the third week to get the older boys in. 3 weeks seems like a long time to be away from family (because it is, especially when it is not by choice), but we can make it - mainly because we have to make it. And more importantly, Janna has to make it as well, which she will - again, because she has to.
Janna has started her chemo treatments. The doc said it would take 4 days for the side effects to start. She started on Friday night and the side effects started Saturday. She has no appetite but is doing the best she can to force herself to eat. She was pretty nauseous at first, but it looks like the docs have her on a good anti-nausea medication now. She's pretty tired as well, but this isn't necessarily a bad thing. If she can sleep through the next 3 weeks, great! She never really got over having a baby 5 weeks ago, since it has been almost all doctor appointments and hospital stays since that time. It's a blessing that she can now get some much needed rest, although we'd all definitely prefer to have her get rest at home.
She is having two high-intensity treatments a day for the first seven days. She is also scheduled to get a chemo drug injected into her backbone tomorrow, just in case the Leukemia has spread into her spinal cord (no record or proof that is has, just preventative right now, thankfully). She seems pretty resigned to the fact that she is going to continue to be poked and prodded and shoved into loud machines over the next 5 months because she understands that this must happen in order to make her whole again.
There is a lot of back-story to how she got to where she is today that I'll share in later posts. We really have received a lot of blessings in the past 5 weeks, all which overshadow the trial we're being asked to pass through at the moment. No, I would have never chosen this to come upon Janna or ask my boys to try to live a normal life while wondering just how sick mommy really is or if she will ever get better. It's not fun being apart - all the boys are reacting to it, but they are incredibly resilient (not to mention miracle baby Clara), and they also understand that she must be apart from us now so she can spend A LOT more time with us in the near future.
We have faith and hope - faith that this is in the Lord's hands and He is in control - that He will continue to inspire the doctors to treat Janna as she needs to be treated to make it through this disease - faith that whatever may come, the Lord will be with each of us. And hope for a better and brighter future together - hope that in 3 weeks, Janna will be able to come home and the doctors will find that the cancer is in remission. And if not, our hope and faith must continue, because I'm not sure what we could do without it.
Thanks to everyone for your continued thoughts and prayers. Please keep them coming!!
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