Cancer-FREE
Friday, July 30, 2010
Pink medicine, pink angel, and pink-lipped smiles.
I am beginning to think that bad people are becoming extinct on our planet. I need to make a list to get it all out there:
- I just finished yet another meal brought to us by loving and selfless chefs.
- Our grass has been cut every Friday by a service we did not order ourselves (and are not seeing the bill).
- Another mystery gift has been dropped off (complete with fresh daisies).
- The Fundraising party to earn money for The Leukemia/Lymphoma Society this week was a huge success. If you still want to buy any products that portions of the proceeds will go to the same cause, here is an address of one more vendor who would like to get in on the giving: ErinRHarris.scentsy.us.
- The Marciniak family showed up at the hospital yesterday with signs and pumpin' positive music (plus food and gifts) to cheer Gideon on before his chemo, and then proceeded to hang out with Brody while Gideon was put under, given the chemo, and then slowly woke up out of his stupor. They then fed him a bagel while Brody threw down some of his break dancing moves on the hospital floor.
- And last, BUT NOT LEAST: Since this is the last week to order your NO SHARK T-SHIRT, Mike Oslund has announced that he will match all donations made this week. Yup. All donations. He is also the one placing the orders, getting the shirts made, AND shipping them out. Now he's giving more cash. Woah. So, let's see how far this can go! Place your shirt order before the deadline of August 7, please!
Yes, we are surrounded by earthly angels alongside those heavenly ones, I'm convinced. By the way, for those of you wondering about Gideon's angel, I have an update. He doesn't talk about her that often, but he woke up two mornings ago and said that his angel brought a friend the night before. I asked who the friend was, and he said it was a "baby girl in pink." I asked him what the baby girl was doing there and he said, "She told me not to spit out my pink medicine." (see the above video - he listened!)
Have an incredible weekend!
Wednesday, July 28, 2010
Wednesday, you WILL be a great day. You WILL.
I don't want to say that yesterday was a difficult day, I would say it was a heavy day. It reminded me of a song lyric (surprise, surprise!): "It's a wet wool blanket, 1-2-3, laid unto your chest until you just can't breathe." The good news is that it is possible to peel those blankets away and get out from underneath it, right?
Enough with my figurative talk. When I called the doctor yesterday morning I was told to bring Gideon in as soon as his fever hit 101 degrees (instead of the normal 101.5). He hovered right around 100 degrees all day. He was lethargic and always feeling like he was going to throw up. The skin under his eyes was pink and purple, and he was more pale than normal. I still don't know how much to attribute to the chemo and how much of this could be a potential illness brewing within him. While doctors and nurses are beyond helpful once we reach the Clinic, there are not many hints they give about what it could be while we are at home. I understand this since guessing without seeing a patient isn't the best method of care. BUT, I adore the families who have been talking me through possible causes since they went down this Leukemia road with their own children. I have literally taken up hours of their time with my questions and worries. Tom and I took separate turns talking to Julie Jenkins (her son Andy is a Leukemia survivor) for the longest time the other day. We like talking to these families separately since we have a different set of worries and concerns...and this avoids my inevitable interrupting. I can only pray that I will be as helpful and soul soothing as these other parents once this is all over. They are the best at putting everything in perspective! Thank you, Jenkins and Brown Families!
The temperature and the lethargic aura Gideon was kicking yesterday was only the air pressure to the heavy quality of the day. The spark that set my head reeling was his over-the-top curiosity concerning all that has been happening to him. I knew this day of honest questions and honest answers would come, but I completely assumed it would come when he was much older but still getting chemotherapy. Nope. Yesterday was the day. I ended up asking, " Just why did I put mascara on today?"
Gideon wanted to rock in his room with me and he was quietly whimpering to himself. I don't even think he realized he was doing it. He started by asking, "Mommy, why do kids get sick? Sick like me?" And the shocked tears instantly surfaced. I have never asked this question out loud, nor has anyone else around us. I have been pushing it aside since it seems so counterproductive. He stared at me and waited for my answer like it was something as simple as "When is lunch?" Once I did my best to answer that, he asked, "Mommy, why are the sharks in MY blood?" He then asked what the sharks look like, so I got out the computer. He were laying on my bed, streaming through picture after picture of blood cells. He got so good, that he was able to identify any "shark" in any picture and then count them. He then asked, "Who else has sharks in their blood? I want to see them!" So, we searched for pictures of children with Leukemia. He noticed many of the pictures depicted children without hair, and Gideon's hand went straight to his head to feel his thinning strands. "But, MOM! I don't wanna lose my HAIR!" and then we had that conversation. I showed him pictures of grown kids who beat the Leukemia and how their hair had returned. Of course, these survivor pictures were attached to each "story." The stories bombarded me. One grown adult recounted his memory of being three and knowing he had Leukemia. The way he remembered in such a deep but fragmented way made my heart ache. Then I had to tell myself: HE REMEMBERS BECAUSE HE IS STILL ALIVE! That is the point to all of this heartache and chemotherapy: curing him!
Gideon was fixated on seeing pictures of other kids with ports. He seems to always want validation when it comes to this strange bump under his skin. Sidenote story: The boys and I were in our swimming suits and I was being all funny. I crouched down and said, "LOOK AT THIS! LOOK AT THIS ROLL! How did this happen?!" and I proceeded to act all woe-is-me about the muffin top around my middle. Gideon pulled up his shirt and said, "Want a port instead?" Woah... Way to jolt me out of my feeling sorry for myself, kid. It was said in an innocent way, but I instantly felt guilty. Perspective, perspective, perspective! It made him feel so much better to see other children like him. At the end of our conversation he said, "Mommy, when I'm better I will go to the park. I will play with other kids because I will be better!" He misses other kids. He misses his church school. I want his numbers up NOW. I know, I'm being demanding. Let's use my sleepiness as an excuse, okay?
Gideon was up a ton last night. He wanted new blankets and again, kept thinking he was going to throw up. His fever disappeared, though. We are going to hang on to THAT fact. An adorable moment this morning was when big brother Brody taught Gideon a dance in the kitchen. It wasn't just any dance. It was the first choreographed dance I taught Brody when he was three, and now he was training Gideon how to do it. It is Hellogoodbye's "Here (In My Arms)". Brody remembered every step and Gideon tried. His patient big bro smiled through Gideon's clumsiness and just kept encouraging him. That moment made up for yesterday all on its own. It's going to be a GREAT day.
Enough with my figurative talk. When I called the doctor yesterday morning I was told to bring Gideon in as soon as his fever hit 101 degrees (instead of the normal 101.5). He hovered right around 100 degrees all day. He was lethargic and always feeling like he was going to throw up. The skin under his eyes was pink and purple, and he was more pale than normal. I still don't know how much to attribute to the chemo and how much of this could be a potential illness brewing within him. While doctors and nurses are beyond helpful once we reach the Clinic, there are not many hints they give about what it could be while we are at home. I understand this since guessing without seeing a patient isn't the best method of care. BUT, I adore the families who have been talking me through possible causes since they went down this Leukemia road with their own children. I have literally taken up hours of their time with my questions and worries. Tom and I took separate turns talking to Julie Jenkins (her son Andy is a Leukemia survivor) for the longest time the other day. We like talking to these families separately since we have a different set of worries and concerns...and this avoids my inevitable interrupting. I can only pray that I will be as helpful and soul soothing as these other parents once this is all over. They are the best at putting everything in perspective! Thank you, Jenkins and Brown Families!
The temperature and the lethargic aura Gideon was kicking yesterday was only the air pressure to the heavy quality of the day. The spark that set my head reeling was his over-the-top curiosity concerning all that has been happening to him. I knew this day of honest questions and honest answers would come, but I completely assumed it would come when he was much older but still getting chemotherapy. Nope. Yesterday was the day. I ended up asking, " Just why did I put mascara on today?"
Gideon wanted to rock in his room with me and he was quietly whimpering to himself. I don't even think he realized he was doing it. He started by asking, "Mommy, why do kids get sick? Sick like me?" And the shocked tears instantly surfaced. I have never asked this question out loud, nor has anyone else around us. I have been pushing it aside since it seems so counterproductive. He stared at me and waited for my answer like it was something as simple as "When is lunch?" Once I did my best to answer that, he asked, "Mommy, why are the sharks in MY blood?" He then asked what the sharks look like, so I got out the computer. He were laying on my bed, streaming through picture after picture of blood cells. He got so good, that he was able to identify any "shark" in any picture and then count them. He then asked, "Who else has sharks in their blood? I want to see them!" So, we searched for pictures of children with Leukemia. He noticed many of the pictures depicted children without hair, and Gideon's hand went straight to his head to feel his thinning strands. "But, MOM! I don't wanna lose my HAIR!" and then we had that conversation. I showed him pictures of grown kids who beat the Leukemia and how their hair had returned. Of course, these survivor pictures were attached to each "story." The stories bombarded me. One grown adult recounted his memory of being three and knowing he had Leukemia. The way he remembered in such a deep but fragmented way made my heart ache. Then I had to tell myself: HE REMEMBERS BECAUSE HE IS STILL ALIVE! That is the point to all of this heartache and chemotherapy: curing him!
Gideon was fixated on seeing pictures of other kids with ports. He seems to always want validation when it comes to this strange bump under his skin. Sidenote story: The boys and I were in our swimming suits and I was being all funny. I crouched down and said, "LOOK AT THIS! LOOK AT THIS ROLL! How did this happen?!" and I proceeded to act all woe-is-me about the muffin top around my middle. Gideon pulled up his shirt and said, "Want a port instead?" Woah... Way to jolt me out of my feeling sorry for myself, kid. It was said in an innocent way, but I instantly felt guilty. Perspective, perspective, perspective! It made him feel so much better to see other children like him. At the end of our conversation he said, "Mommy, when I'm better I will go to the park. I will play with other kids because I will be better!" He misses other kids. He misses his church school. I want his numbers up NOW. I know, I'm being demanding. Let's use my sleepiness as an excuse, okay?
Gideon was up a ton last night. He wanted new blankets and again, kept thinking he was going to throw up. His fever disappeared, though. We are going to hang on to THAT fact. An adorable moment this morning was when big brother Brody taught Gideon a dance in the kitchen. It wasn't just any dance. It was the first choreographed dance I taught Brody when he was three, and now he was training Gideon how to do it. It is Hellogoodbye's "Here (In My Arms)". Brody remembered every step and Gideon tried. His patient big bro smiled through Gideon's clumsiness and just kept encouraging him. That moment made up for yesterday all on its own. It's going to be a GREAT day.
Tuesday, July 27, 2010
My Late Night/Early Morning
3:45 in the morning and I am pacing. Pacing and praying. Well, now I'm praying and typing. Just when hints of what seem to be normal come along, albeit with minor idiosyncrasies, strange and new situations ensue. Predictability is guaranteed to never be a side effect of cancer.
Gideon was awake and talking to me about his Band-Aids around 2a.m. He believes there should be more colors and styles available to him in our medicine cabinet. I agreed and murmured something back about going to the store in the morning. He then asked for milk...five minutes later, juice. When I tucked him in after the juice, he felt hot. I sat him on my lap and took his temperature axillary-style. The thermometer said 101.2 degrees. I am supposed to call the doctor at 101.5 degrees. So, I tried the other armpit: 101.1 degrees. So, I tried a different thermometer: 100.9 degrees. UGH! Those fear pangs started jolting me wide awake. The entire time I checked him, Gideon was making his fingers talk to one another.
"Hello, Tall Man! Your nail is longer than mine."
"Well, baby Pinky, you are just sooOOoooo little! Someday your nail will grow!"
Believe it or not, this finger conversation is lucid behavior for our little man. While my mind was hemming and hawing over whether I should wake some poor sleeping Oncologist, Ring Finger discovered he was without a ring! Panic and worry was seeping through my thoughts and my heart, but was softened by this hot and entertaining bundle on my lap. He was just happy for a diversion from sleep. He just lifted his arm temperature after temperature check. He never let it interrupt the finger production he was focused on... If there was such a thing as a Finger Grammy, I'd say Pointer Finger won it. He was bossy! He owned his wagging reputation, and made me smile with his exasperated voice as he made his orders known to the other fingers.
Meanwhile, in reality (I wish I could have stayed in Finger World), the thermometer went down to 100.2 degrees. I started to think that yes, he is fighting something, but also that he may have been hot under all of those covers as well. I decided to watch him and wait. And type this all in my blog to use as a play-by-play for the doctor in the morning. Nothing is worse than that blank, "Ummmmm...." when the doctor asks what his temperature was, especially when it was JUST in the forefront of the cranium, but took a nosedive into the ocean of forgotten facts. I need some brain exercises -- another lesson I am learning through this experience.
4:30 -- pee break and Gideon requested the puke bucket. As I held his head and he made horrible gagging noises, I pictured virus/bacteria fighting agents coursing out of my hands and through the skin of his little forehead. I do this a lot. I think maybe all moms do, but never talk about it. It almost feels like the section of my skin that is touching his is somehow lit up and glowing with antibacterial and antiviral fighting powers gently pulsating from my heartbeat and into his body. Maybe this is something I do to help me concentrate on staying strong when he's weak. I just know it's prayer that is spoken through heartbeats instead of words. The most holy of prayers that only One can answer. And I believe them. I believe this ET-like connection happens between moms and babies through these silent pleadings that are louder than any screams since the source is much deeper than the lungs.
Nothing came in the way of vomit (at all), but Gideon's chatter subsided and he fell into his pillow exhausted. His cheeks are almost completely back to the normal Gideon size, but now his eyelids are puffy. It seems that is one of the few things this new daily chemo is doing: eyelid puffs, nausea, and NO appetite! It is strange to go from a ravenous eating monster to someone who finds food repulsive in such a short time. When will I realize that strange is now normal? I don't think I'll ever get used to this, nor do I want to!
Now it is 5a.m. and my mommy hand has detected that Gideon is still very warm, but seems to be sleeping peacefully. I will call right away in the morning, and have him looked over. Or, maybe I'll be told just to watch him. He still has that cough that is rattly...
Why do I always envision some sinister bug clinging to me from the outside world, waiting for his moment to pounce on my defenseless boy? The bug always comes from me in my mind, and from no other source. Nothing is scarier to me than bringing home something that could seriously harm Gideon.
Have I mentioned that I hate cancer? I think I have. I constantly wonder if someday human beings will look back on cancer the way we now do about The Black Plague. It was a flea, people! A FLEA! Theories are another new unwanted obsession of mine as of late. Like, instead of saying, "A FLEA!" I'm thinking we will one day say, "A MICROWAVE! It was all the microwave's fault!" or "Nuclear testing!" Or sometimes it is a simple solution to cancer that involves dryer sheets that I become fixated thinking about... I don't even want to go into the deeper folds of my mind right now, some of my theories are baffling and I get shocked by my own ideas. Anyway, I pray there will be some easy way to deal with this atrocity that has inflicted too many people. Even if this easy solution makes us all smack the sides of our heads and say, "Why didn't I think of that?!" the way we do now when we see some simple discovery that is getting crazy notoriety on Infomercials, I'll take it!
Now it is 5:30 in the morning. Based on my babbling and total diarrhea of the keyboard you have just witnessed, I'm guessing I should try to sleep a few hours. Goodnight and Good Morning (to you early risers)!
Gideon was awake and talking to me about his Band-Aids around 2a.m. He believes there should be more colors and styles available to him in our medicine cabinet. I agreed and murmured something back about going to the store in the morning. He then asked for milk...five minutes later, juice. When I tucked him in after the juice, he felt hot. I sat him on my lap and took his temperature axillary-style. The thermometer said 101.2 degrees. I am supposed to call the doctor at 101.5 degrees. So, I tried the other armpit: 101.1 degrees. So, I tried a different thermometer: 100.9 degrees. UGH! Those fear pangs started jolting me wide awake. The entire time I checked him, Gideon was making his fingers talk to one another.
"Hello, Tall Man! Your nail is longer than mine."
"Well, baby Pinky, you are just sooOOoooo little! Someday your nail will grow!"
Believe it or not, this finger conversation is lucid behavior for our little man. While my mind was hemming and hawing over whether I should wake some poor sleeping Oncologist, Ring Finger discovered he was without a ring! Panic and worry was seeping through my thoughts and my heart, but was softened by this hot and entertaining bundle on my lap. He was just happy for a diversion from sleep. He just lifted his arm temperature after temperature check. He never let it interrupt the finger production he was focused on... If there was such a thing as a Finger Grammy, I'd say Pointer Finger won it. He was bossy! He owned his wagging reputation, and made me smile with his exasperated voice as he made his orders known to the other fingers.
Meanwhile, in reality (I wish I could have stayed in Finger World), the thermometer went down to 100.2 degrees. I started to think that yes, he is fighting something, but also that he may have been hot under all of those covers as well. I decided to watch him and wait. And type this all in my blog to use as a play-by-play for the doctor in the morning. Nothing is worse than that blank, "Ummmmm...." when the doctor asks what his temperature was, especially when it was JUST in the forefront of the cranium, but took a nosedive into the ocean of forgotten facts. I need some brain exercises -- another lesson I am learning through this experience.
4:30 -- pee break and Gideon requested the puke bucket. As I held his head and he made horrible gagging noises, I pictured virus/bacteria fighting agents coursing out of my hands and through the skin of his little forehead. I do this a lot. I think maybe all moms do, but never talk about it. It almost feels like the section of my skin that is touching his is somehow lit up and glowing with antibacterial and antiviral fighting powers gently pulsating from my heartbeat and into his body. Maybe this is something I do to help me concentrate on staying strong when he's weak. I just know it's prayer that is spoken through heartbeats instead of words. The most holy of prayers that only One can answer. And I believe them. I believe this ET-like connection happens between moms and babies through these silent pleadings that are louder than any screams since the source is much deeper than the lungs.
Nothing came in the way of vomit (at all), but Gideon's chatter subsided and he fell into his pillow exhausted. His cheeks are almost completely back to the normal Gideon size, but now his eyelids are puffy. It seems that is one of the few things this new daily chemo is doing: eyelid puffs, nausea, and NO appetite! It is strange to go from a ravenous eating monster to someone who finds food repulsive in such a short time. When will I realize that strange is now normal? I don't think I'll ever get used to this, nor do I want to!
Now it is 5a.m. and my mommy hand has detected that Gideon is still very warm, but seems to be sleeping peacefully. I will call right away in the morning, and have him looked over. Or, maybe I'll be told just to watch him. He still has that cough that is rattly...
Why do I always envision some sinister bug clinging to me from the outside world, waiting for his moment to pounce on my defenseless boy? The bug always comes from me in my mind, and from no other source. Nothing is scarier to me than bringing home something that could seriously harm Gideon.
Have I mentioned that I hate cancer? I think I have. I constantly wonder if someday human beings will look back on cancer the way we now do about The Black Plague. It was a flea, people! A FLEA! Theories are another new unwanted obsession of mine as of late. Like, instead of saying, "A FLEA!" I'm thinking we will one day say, "A MICROWAVE! It was all the microwave's fault!" or "Nuclear testing!" Or sometimes it is a simple solution to cancer that involves dryer sheets that I become fixated thinking about... I don't even want to go into the deeper folds of my mind right now, some of my theories are baffling and I get shocked by my own ideas. Anyway, I pray there will be some easy way to deal with this atrocity that has inflicted too many people. Even if this easy solution makes us all smack the sides of our heads and say, "Why didn't I think of that?!" the way we do now when we see some simple discovery that is getting crazy notoriety on Infomercials, I'll take it!
Now it is 5:30 in the morning. Based on my babbling and total diarrhea of the keyboard you have just witnessed, I'm guessing I should try to sleep a few hours. Goodnight and Good Morning (to you early risers)!
Saturday, July 24, 2010
We are not alone in this.
We feel each one of your prayers, thoughts, and wishes. We know we are not alone in this fight to beat Gideon's cancer. Whether it is in your cards, your comments, your emails, your mini-vacation escapes, your warm meals or the silent prayers you send up at night: we know we are enveloped in the warmest and strongest hug of support.
Life never ceases to fascinate me, especially throughout this last month brimming over with daily miracles of human love, friendship, and compassion. Thank you for being there for us! I've said it before, but I'll say it again: There is more beauty in humanity than the media wants to show us. If there was a mini-camera in my head for all of you to view in these past few weeks, you wouldn't stop crying with gratitude for the absolute gorgeousness that exists within so many human souls. We love and adore you ALL! Again... thanks will never be enough!
Life never ceases to fascinate me, especially throughout this last month brimming over with daily miracles of human love, friendship, and compassion. Thank you for being there for us! I've said it before, but I'll say it again: There is more beauty in humanity than the media wants to show us. If there was a mini-camera in my head for all of you to view in these past few weeks, you wouldn't stop crying with gratitude for the absolute gorgeousness that exists within so many human souls. We love and adore you ALL! Again... thanks will never be enough!
Thursday, July 22, 2010
Let's get technical, technical!
These last two days have been heavenly. Gideon and Brody have been best friends. Gideon is actually interested in playing outside and walking around... His walk is still off kilter and he has a difficult time standing up or climbing anything, but he tries! He always attempts and then says, "Mommy! My legs stopped working again..." like he is reporting that his shoelaces are untied. It's the new normal. My mental video camera has been rolling nonstop so that each happy moment is captured and stored up for later.
We now know what "later" is going to entail... well, more than we knew before. Again, everything depends on Gideon's reactions to chemotherapy, his blood counts, his ANC levels...all of it. We will never be able to predict with certainty which days will be good days and which days will be difficult days (I won't say "bad days" -- let's get that out of our lexicon, shall we? You are alive and it is a day. There is nothing BAD about that! And I am now stepping down from my soapbox and exiting on stage left).
The Facts:
Stages of Chemotherapy
1. INDUCTION (we are DONE with this stage!)
2. CONSOLIDATION (we start this phase tomorrow at 8:15am): about 1 month long
3. INTERIM MAINTENANCE: about 2 months long
4. DELAYED INTENSIFICATION (this is the most difficult one, from what we've been told): about 2-? months long
5. MAINTENANCE: remainder of the Chemotherapy until the 2 1/2 years are up!
This newest stage of chemotherapy (Consolidation) is further Central Nervous System preventative therapy. Really, we don't want the cancer to seep into the spinal fluid or the brain, and this leg of the treatment really acts as a precaution to this potential danger. Tomorrow morning (also known as DAY ONE of Consolidation) he will have a spinal tap, Methotrexate chemo through the spine, and Vincristine. The Vincristine is the one that messes with Gideon's nerves and his ability to walk normally, etc. It is what has already caused those noticeable differences in how he carries himself.
How this month will look:
* ORAL CHEMOTHERAPY DAILY: 6MP (this is a new one Gideon has not taken yet... we're praying it tastes more like candy than medicine. Have I mentioned we don't give up dreaming in this house?) It does lower blood counts, and it has some other less common side effects. We are praying those side effects stay far away from us.
* DAY ONE (tomorrow), DAY 8, DAY 15: spinal tap, Methotrexate
* DAY ONE: Vincristine
I think we'll stop at this phase and once this leg is complete, we'll focus on the next. How'd I do for being all technical and straight forward? I didn't even get into the realm of the metaphor! I am a mathematical story problem with the picture all drawn out and the solution circled. Plus, I showed all of my math. Love me, mathematical and straight-forward thinkers! Love me!
We now know what "later" is going to entail... well, more than we knew before. Again, everything depends on Gideon's reactions to chemotherapy, his blood counts, his ANC levels...all of it. We will never be able to predict with certainty which days will be good days and which days will be difficult days (I won't say "bad days" -- let's get that out of our lexicon, shall we? You are alive and it is a day. There is nothing BAD about that! And I am now stepping down from my soapbox and exiting on stage left).
The Facts:
Stages of Chemotherapy
1. INDUCTION (we are DONE with this stage!)
2. CONSOLIDATION (we start this phase tomorrow at 8:15am): about 1 month long
3. INTERIM MAINTENANCE: about 2 months long
4. DELAYED INTENSIFICATION (this is the most difficult one, from what we've been told): about 2-? months long
5. MAINTENANCE: remainder of the Chemotherapy until the 2 1/2 years are up!
This newest stage of chemotherapy (Consolidation) is further Central Nervous System preventative therapy. Really, we don't want the cancer to seep into the spinal fluid or the brain, and this leg of the treatment really acts as a precaution to this potential danger. Tomorrow morning (also known as DAY ONE of Consolidation) he will have a spinal tap, Methotrexate chemo through the spine, and Vincristine. The Vincristine is the one that messes with Gideon's nerves and his ability to walk normally, etc. It is what has already caused those noticeable differences in how he carries himself.
How this month will look:
* ORAL CHEMOTHERAPY DAILY: 6MP (this is a new one Gideon has not taken yet... we're praying it tastes more like candy than medicine. Have I mentioned we don't give up dreaming in this house?) It does lower blood counts, and it has some other less common side effects. We are praying those side effects stay far away from us.
* DAY ONE (tomorrow), DAY 8, DAY 15: spinal tap, Methotrexate
* DAY ONE: Vincristine
I think we'll stop at this phase and once this leg is complete, we'll focus on the next. How'd I do for being all technical and straight forward? I didn't even get into the realm of the metaphor! I am a mathematical story problem with the picture all drawn out and the solution circled. Plus, I showed all of my math. Love me, mathematical and straight-forward thinkers! Love me!
Monday, July 19, 2010
A letter to the BIG SUPER BROTHER
Dear Brody,
Someday we will all have this time chronicled in our hearts, our minds, and in this blog. You will read these words and see your name scattered here and there, but the vast majority has been about Gideon. It is insane to me the way you already have quietly accepted the backseat in this experience, never begging for special treatment or even remotely equal treatment as your brother. You go about playing, chatting, and avoiding the steroid-Gideon with your same humongous heart and happy soul, but you do so in a quieter, more wallflower, kind of way. I never want my superstar dancer/rockstar/super hero/sport lover to ever feel like your voice should somehow be muted because of this deafening cancer that is filling this house with that extra noise. Please read this excerpt as yours. Only yours. Please let the words drench you in the love I have for you -- it is no less than the love I have for your baby brother. You are not just "Gideon's brother," you are "Brody!" You are "The strong big brother with a heart that goes on to the heavens and back, and with a soul steadier and stronger than any mountain I have ever climbed (even though I only climbed one, but hey! It was a mountain)!" Even though your name means "brother" in lucky Irish, it is also synonymous with patient one, Socrates-like insight, unequivocal imagination, thought-provoking muser, one any human (or animal) can trust, and pure spirit. You are the big brother, my first baby (and always my baby -- even when you're 80, remember?). This world needs YOU, too, Brody Thomas Schripsema!
Yesterday morning every facet of your eyes shone with radiant awe. You triumphantly marched into the kitchen where I was pouring yet another cup of coffee and breathlessly announced, "Gideon is my best friend again! Come see! HURRY!" You pawed at my mug-less left hand and caught my pinky which you used to steer me into the family room.
"We made this...TOGETHER!" you proudly shouted, and with a Vanna-like TADA! fanning of your hand, you gestured to the building block motorcycle course, monster truck stomping ground and surrounding city. "WATCH! He'll even SHARE!" you screeched with more enthusiasm than I've heard out of you in months. You centered yourself in front of your little brother, took a steadying breath, and tentatively, oh-so-carefully asked, "Gideon? May I please use your yellow monster truck?"
"Sure, Brody!" Gideon smiled at me as if he, too, knew something magical just happened that has laid dormant underneath crazy drugs in his system for 29 days.
This is when you made your mommy's eyes well-up, Mr. Brody: Your own eyes grew huge in astonishment and your jaw dropped in my direction as if to say, "SEE?! I TOLD YOU! How amazing IS this?!" and you slowly shook your head with a wide smile plastered on your face, inched closer to Gideon, and swung one arm around him in your trademark "brother hug" -- complete with a pat. For the first time in a long time, Gideon leaned in and I noticed you flinch as if you just realized that what we had been waiting for for such an intolerably long time had come to pass: your brother and best friend returned!
I am blessed to have witnessed that moment, and that was spa-treatment for my soul, I promise. But you are so much more than that moment, Brody. You are every moment. Your words curl around my heart and infuse me with instant trust. When you say to me, "Mommy, I promise I'll be careful," I BELIEVE you. I feel calmed by your confidence, and you are only five. How many moms can say that? I would imagine not many.
Throughout this cancer-bit, you have cheered your brother on in the medicine chair. When Gideon made a comment about how "fat" his shoulders were (thank you, stranger walking your dog. Or not. Please keep your comments to yourself), you said, "They aren't FAT! They are football player shoulders! You are getting so strong fighting those sharks, Gideon!" How you came up with that reply to make your brother smile so quickly while I still stood dumbstruck because Gideon even realized his shoulders were bigger, I'll never know.
While I have had to sit in the Clinic for hours at a time, you let yourself be shuffled from caretaker to caretaker. Every morning you have looked at me with sad puppy-dog acceptance and asked, "Is Gideon going to the hospital today? Then where am I going?" as if you were some sort of dish-to-pass from neighbor to neighbor, family member to family member. It is unfair. Truly. We should be heading to the beach right now, or the zoo, or the Nature Center, or on those hot and miserable days: The Airzoo. But, our Universe has taken on a different path than what we anticipated and you. don't. even. complain. You truly are my hero, B-boy.
Thank you for inspiring me in the car. It is as if your booster seat is your Philosopher Think Tank. I watch you in the rearview mirror with your brow all scrunched up, and I get excited because I know you're cooking up something spectacular in that noggin of yours. I always wait for the furrow to smooth out and a light of old soul understanding to come on in those grey-blue eyes of yours (and those lashes! Swoon, Brody! Those are lashes that are going to slice through hearts one day, I know it!) before I ask, "What are you thinking about, Brody?" Here are just a precious FEW of the things you have answered in the recent past:
- "The bug guts on the windshield are beautiful. They are like snowflakes that never melt."
- "Why are people trying to drive too fast when there are so many cool cars, fast motorcycles, and outside stuff to look at?"
- "When you say, 'Come on!' it can mean, 'Come on, let's go!' because we are leaving to go somewhere, or 'DRIVE FASTER!'"
- "Those poor, naked trees. I hope they know that they'll get new leaves in the spring and that they're not too cold waiting for that to happen."
Yes, those are a priceless few. You are my Socrates jammed into a 5-year-old body.
Thank you for having me find you yesterday head-to-toe in beige, a belt wrapped around my beige shirt you "borrowed" from the dirty clothes basket, and a light-saber hooked into that belt. I was calling for you for an inordinate amount of time, and you wouldn't answer. When I found you, I got that mom voice of how-come-you-didn't-answer-me?! frustration. You looked at me with a steady eye and calmly stated, "You didn't call me. I'm Anakin Skywalker. Call me Anakin, and I'll come." How could I get mad at that retort? You were the spitting image of that character. You studied the picture you had open on your bed and you did a better job of being his double than Steven Spielberg himself could have done for you. Your boundless imagination always amazes me, mister. Dress-up with you is living the life of that character as close to real life as anyone could get. You are my detail boy, my quiet introspective studier. While I have never been quiet and I have always found my energy from others, you channel yours from that powerful spirit within you. I am in awe of you. I think I've already said that, but it needs to be repeated!
I am publishing this tidbit, this infinitesimal pinpoint of what makes you incredible to anyone who cares to read it. Even if it is never even looked at, I will know it is here: on this screen and wrapped within every layer of my heart. (Don't you roll your eyes at your cheesy mom, thirteen year old Brody... I know you love that I did this!) You may get looked over because your brother is the one with cancer, but YOU were the one chosen to be his brother. YOU were the one put on this earth first so that you could show him the ropes and to make him feel more confident. YOU will be the one who will guide him more than anyone can fathom (other than other little boys with big brothers). YOU are the one God knew could handle this burden with the grace, maturity, love, and unending patience that only YOU possess. How you have been able to quietly withstand being Gideon's punching bag (without even tattling! I've had to walk in on it and step in), and continue to love him unconditionally is beyond my capacity to understand. You love with your entire being, and it is your entire being that I love.
You are cherished. Adored. Loved beyond all measure. Please don't ever forget that, Big Bro B. YOU are more than a brother, by the way. Your soul can stand alone and it will and has changed all of us for the better.
Forever,
Mommy
Sunday, July 18, 2010
Good Morning!
I'm BACK! The sun is out and I am madly in love with humanity once again. When sleep gets cut off, I'm pretty sure my endorphins and all thoughts optimistic get smothered as well. This precious gift of rest has come to me, and I finally feel like myself again. I'm still a little drowsy, but no where near the exhaustion that was the storm cloud looming over my head ala cartoons of depressed characters. The coffee in my hand is delicious (Thank you, Kristen and Jaime!) and it is actually helping. Ahhhh... little sparks of normalcy does this heart good.
Friday night was longer than the previous nights, if you can believe it. Gideon got up to go to the bathroom twenty seven times. I counted because it made me feel like I had a glimmer of control over the situation, and it made me more awake during the bathroom get-ups. If I would have let myself sleepwalk while bringing this boy to the bathroom, there's no telling where I would have set him to do his business. We don't need ruined furniture on top of everything else. He had a lot of pain in his lower abdomen, so I called his Oncologist. He was thrashing in his bed throughout the night (when he wasn't peeing), and I tried hot packs, cold packs, massage... Finally, I bundled him up like a baby and held him tight while rocking him. He drifted off to sleep when I did this, and I was so thankful. My lullaby voice was completely raspy, but Gideon didn't seem to mind. This seemed more than kidney stones.
He did not have any kind of bacterial bladder or urinary tract infection since they checked that when I went to the hospital on Friday (that same day). I was told that the amount of peeing has to do with the water retention from the steroids. Our puffy boy is gradually shrinking back to size and the water has to go somewhere! Dr. Lobel subscribed Gideon with a drug that would help alleviate the pain he was experiencing since he had a feeling it was a viral bladder infection, and not kidney stones. There's no medicine to cure this, only medicine to deal with the discomfort.
Tom took Gideon to the hospital to get more tests done yesterday (Saturday). We will know in a few days if it is in fact a viral infection, but in the meantime, Gideon already is taking the medicine for it. Our Oncologist is so very proactive. I am thankful for that! I asked him what caused this... I was starting to roundup all of the bubble bath to dispose of it -- convinced that is what caused the problem. Dr. Lobel said that Gideon contracted a normal virus that would normally only cause sniffles and coughs in healthy children, but viruses attack anything they can when a child doesn't have the immunity to fight it. This virus chose Gideon's bladder. So, I guess what I mean to say is this: PLEASE understand my neurotic behavior when it comes to even the possibility of you or your children having a cold. It may only be a "cold", but it turns into something so much worse for my baby.
Gideon and I took a monster nap yesterday, and the new medicine eased so much of Gideon's pain. We went to a picnic at the park. Gideon walked a ton, but then his legs gave out and he fell. No blood (thankfully), but the little honey didn't want to call it a night. He wanted me to carry him and run around the park while doing so. "RUN, MOMMY! RUN!" I have not worked out in awhile, and WOW! I was winded, but I kept going because of the smile on his face and the trilling giggles that spurred me on even more.
Once we got back to our car, the fireflies were out. Brody is the best firefly catcher around. So, he taught Gideon his skills and by the time we got home, the two of them were sneaking up on these little creatures and gently cupping them in their hands. They giggled together and compared bugs with joy spilling out of each moment. This was the better kind of heartburst -- the pause button moment of life, and I was so thankful!
Because of the medicine, Gideon only got up three times last night! THREE! That was an easy one to count and keep track of... I am feeling wonderful, and I know this virus will be taken care of in no time. Yes. Optimism feels so much better. Thank you for your prayers for my sleep and rest! They have worked, once again.
On a side-note, I have had many people ask about Gideon's remission and if this is normal. I ganked this quote from one of my favorite cancer sites (that sounds weird: "favorite cancer site"...like it's a popsicle flavor or something...): "Most patients with ALL are given induction chemotherapy. The goal of induction therapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease. Induction therapy achieves a remission in more than 95% of children and in about 75% to 89% of adults. Induction therapy is usually very intense and lasts about one month. After induction chemotherapy, the next step may be a transplant or consolidation chemotherapy, depending on the treatment plan."
So, 95% of children achieve remission after this Induction therapy. Gideon is one of those in that 95% category, and I am GRATEFUL and HAPPY about that. He could be one of those in the 5%, and he is not. So we will praise God for that. This is not like other cancers where the treatment happens, remission is obtained, and a cure is around the corner. We still have the full three years to go through, regardless of what the tests say. I will post what the next phase, consolidation chemotherapy, will entail soon after our meeting with Dr. Lobel.
Thank you for your questions, and please feel free to keep them coming! We will beat this cancer completely. This is not even a doubt in my mind.
Friday night was longer than the previous nights, if you can believe it. Gideon got up to go to the bathroom twenty seven times. I counted because it made me feel like I had a glimmer of control over the situation, and it made me more awake during the bathroom get-ups. If I would have let myself sleepwalk while bringing this boy to the bathroom, there's no telling where I would have set him to do his business. We don't need ruined furniture on top of everything else. He had a lot of pain in his lower abdomen, so I called his Oncologist. He was thrashing in his bed throughout the night (when he wasn't peeing), and I tried hot packs, cold packs, massage... Finally, I bundled him up like a baby and held him tight while rocking him. He drifted off to sleep when I did this, and I was so thankful. My lullaby voice was completely raspy, but Gideon didn't seem to mind. This seemed more than kidney stones.
He did not have any kind of bacterial bladder or urinary tract infection since they checked that when I went to the hospital on Friday (that same day). I was told that the amount of peeing has to do with the water retention from the steroids. Our puffy boy is gradually shrinking back to size and the water has to go somewhere! Dr. Lobel subscribed Gideon with a drug that would help alleviate the pain he was experiencing since he had a feeling it was a viral bladder infection, and not kidney stones. There's no medicine to cure this, only medicine to deal with the discomfort.
Tom took Gideon to the hospital to get more tests done yesterday (Saturday). We will know in a few days if it is in fact a viral infection, but in the meantime, Gideon already is taking the medicine for it. Our Oncologist is so very proactive. I am thankful for that! I asked him what caused this... I was starting to roundup all of the bubble bath to dispose of it -- convinced that is what caused the problem. Dr. Lobel said that Gideon contracted a normal virus that would normally only cause sniffles and coughs in healthy children, but viruses attack anything they can when a child doesn't have the immunity to fight it. This virus chose Gideon's bladder. So, I guess what I mean to say is this: PLEASE understand my neurotic behavior when it comes to even the possibility of you or your children having a cold. It may only be a "cold", but it turns into something so much worse for my baby.
Gideon and I took a monster nap yesterday, and the new medicine eased so much of Gideon's pain. We went to a picnic at the park. Gideon walked a ton, but then his legs gave out and he fell. No blood (thankfully), but the little honey didn't want to call it a night. He wanted me to carry him and run around the park while doing so. "RUN, MOMMY! RUN!" I have not worked out in awhile, and WOW! I was winded, but I kept going because of the smile on his face and the trilling giggles that spurred me on even more.
Once we got back to our car, the fireflies were out. Brody is the best firefly catcher around. So, he taught Gideon his skills and by the time we got home, the two of them were sneaking up on these little creatures and gently cupping them in their hands. They giggled together and compared bugs with joy spilling out of each moment. This was the better kind of heartburst -- the pause button moment of life, and I was so thankful!
Because of the medicine, Gideon only got up three times last night! THREE! That was an easy one to count and keep track of... I am feeling wonderful, and I know this virus will be taken care of in no time. Yes. Optimism feels so much better. Thank you for your prayers for my sleep and rest! They have worked, once again.
On a side-note, I have had many people ask about Gideon's remission and if this is normal. I ganked this quote from one of my favorite cancer sites (that sounds weird: "favorite cancer site"...like it's a popsicle flavor or something...): "Most patients with ALL are given induction chemotherapy. The goal of induction therapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease. Induction therapy achieves a remission in more than 95% of children and in about 75% to 89% of adults. Induction therapy is usually very intense and lasts about one month. After induction chemotherapy, the next step may be a transplant or consolidation chemotherapy, depending on the treatment plan."
So, 95% of children achieve remission after this Induction therapy. Gideon is one of those in that 95% category, and I am GRATEFUL and HAPPY about that. He could be one of those in the 5%, and he is not. So we will praise God for that. This is not like other cancers where the treatment happens, remission is obtained, and a cure is around the corner. We still have the full three years to go through, regardless of what the tests say. I will post what the next phase, consolidation chemotherapy, will entail soon after our meeting with Dr. Lobel.
Thank you for your questions, and please feel free to keep them coming! We will beat this cancer completely. This is not even a doubt in my mind.
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