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.
Friday, July 16, 2010
REMISSION and kidney stones
To be honest, I have been putting off writing in this blog, but then I realized that there are people waiting to hear how our Gideon is doing. I say "our" Gideon, because this boy's soul is more powerful than any nuclear power plant out there (only he creates completely reusable power that only kicks out smiles as its sole byproduct) and it would be selfish of me to monopolize this priceless energy source. The world needs to tap in.
I kind of needed to shut off the world yesterday...and part of today, to be honest. I wanted no one to look at me or talk to me or even smile at me (besides my boys). This was sleep deprivation at its finest. That doesn't sound right. This was sleep deprivation at its ugliest. The night before Gideon's spinal was BEAUTIFUL for him -- prayers were answered. He woke up and asked for food at 12:07 am, but I explained he couldn't have anymore since he was getting sleepy medicine in the morning. I told him Dr. Lobel didn't want him to get sick and that he could eat as soon as his sleepy medicine was over. Gideon ADORES Dr. Lobel. He respects that man more than Santa. So, he rolled over and went to sleep - for the night. Miracle? Yup. The only problem was that he complained that he was going to puke, so I sat with one eye open all night with the puke bucket in my hand. This added to the sleepiness for me, but I am over the moon since Gideon had such an easy night without screaming and food cravings left unfulfilled. It could have gotten ugly, but it didn't!
Thursday marked Day 29 in the treatment process. Gideon had his spinal tap, chemo, and marrow extraction. He came out of "Twilight" happily and without trying to take out nurses. All involved remained bruise-less. Some of his marrow was sent to John Hopkins for the MRD testing. This stands for "Minimal Residual Disease" and it means that there are traces of cancer still remaining within a patient, even though all other tests show remission. The result of this test could change the trajectory of Gideon's treatment. We will find out these results next week when Tom and I have our one-on-one meeting with Dr. Lobel. He will also explain the next phase of chemotherapy (including new medicine). Thankfully, when the steroid is needed it will only be needed in spurts of a few days instead of twice a day for 29 days. We got through that leg of the journey. Can I get a sigh of relief? .....................
After the chemo and everything, I was seeing double and feeling a little paranoid about life. Enter Ann Thornton. She swept in and told me it was okay to go off on her if I needed to. I did. I went off and I prefaced everything I said with "I know I'm being irrational, but..." She listened and didn't try to talk me out of my craziness. Do you know how refreshing it is to be heard and not judged? Once I got it all out of my system, my heart felt like it shed its crusty layer of blah-ness. Oh. To have the freedom to molt in front of friends and still feel the love through that less than pretty experience. I am beyond lucky to have real friends. Thank you, Ann.
Last night was one of those silly putty nights sans the fun...It was just a mass of minutes being pulled thin but not breaking. Over and over the strands kept getting tugged, and a nervous ball of clay string remained. Gideon tossed and turned and moaned throughout the night. His body was shaking. He cried a lot, and when he was sleeping, the whimpering continued. Throughout this entire chemotherapy and cancer bout, Gideon has not had ONE accident. This includes the days he had ExLax! This is impressive for such a little guy. He made it to the toilet every time -- every explosive episode ended on the porcelain throne. Last night, through the tossing and turning and pain, Gideon wet through everything three times. The saddest part of all of this was how disappointed he was with himself. "I still a big boy, right mommy?" He asked me again and again with tears swelling in those baby blues. Something was wrong (besides the fact that my three year old has cancer, I mean).
Before we get to that: It seems as though this new world we've landed in has low-lows immediately followed by high-highs. There is no la-la-la middle. Not yet, anyway. I have never in my life felt bored, but I would adore that lazy feeling again. Anyway, after this heart quaking night, we got the call from Dr. Lobel that set off fireworks of jubilation: Gideon is in remission! M1 was attained since there were 5% or fewer leukemic cells in the marrow. PRAISE! Isn't that fabulous news? This means that we are going to wait on that MRD test for more information, but we are going to trudge forward in completely beating this disease. Many people have asked me since he is in remission, doesn't that mean that we can stop chemotherapy? The answer is no. New Leukemia cells would still be produced if we stopped the treatment now. But that doesn't stop us from celebrating this fabulous news! Gideon's next spinal chemotherapy is next Friday, and that marks the beginning of the next phase.
Today Gideon laid low and only wanted to rest. Watching him struggle to steady his hand enough to put his pancake in his mouth made me want to squeeze him. I wanted to take the shake out of him and into me. I wanted to soak it out of him so that I could be his buffer, and the stillness of calm would be all that remained. Gideon complained of his head hurting and every single joint, as well. He can hardly stand without collapsing. This is when the Wonderwoman gene is supposed to circulate through my system, but it was slower to arrive today. Gideon ended up with a fever. I took him into the Clinic and explained his bed wetting night, his aversion to the bathroom today, his body aches, his shaking... all of it. Come to find out, there was blood in Gideon's urine and a possible virus on top of that. So, prayers are needed once again. We were told that it most likely a kidney stone produced during the steroid infestation. Did I mention that I loathe steroids? Yes? Well, they are even more despicable to me now. Although, they are beyond important in the whole treatment process, and I hate cancer more.
So, please pray for an easy passing of this stone. I am pumping him full of fluid by telling him that the good fishies need more water to swim in inside of his body.
Miracles are still happening, and I will forever focus on those (even when it gets tough to do so). I am thankful for YOU since you are going through the journey with me.
P.S. Some people have asked how they can read old posts. Do do that, click on "June" on the right. All of my first posts are there.
I kind of needed to shut off the world yesterday...and part of today, to be honest. I wanted no one to look at me or talk to me or even smile at me (besides my boys). This was sleep deprivation at its finest. That doesn't sound right. This was sleep deprivation at its ugliest. The night before Gideon's spinal was BEAUTIFUL for him -- prayers were answered. He woke up and asked for food at 12:07 am, but I explained he couldn't have anymore since he was getting sleepy medicine in the morning. I told him Dr. Lobel didn't want him to get sick and that he could eat as soon as his sleepy medicine was over. Gideon ADORES Dr. Lobel. He respects that man more than Santa. So, he rolled over and went to sleep - for the night. Miracle? Yup. The only problem was that he complained that he was going to puke, so I sat with one eye open all night with the puke bucket in my hand. This added to the sleepiness for me, but I am over the moon since Gideon had such an easy night without screaming and food cravings left unfulfilled. It could have gotten ugly, but it didn't!
Thursday marked Day 29 in the treatment process. Gideon had his spinal tap, chemo, and marrow extraction. He came out of "Twilight" happily and without trying to take out nurses. All involved remained bruise-less. Some of his marrow was sent to John Hopkins for the MRD testing. This stands for "Minimal Residual Disease" and it means that there are traces of cancer still remaining within a patient, even though all other tests show remission. The result of this test could change the trajectory of Gideon's treatment. We will find out these results next week when Tom and I have our one-on-one meeting with Dr. Lobel. He will also explain the next phase of chemotherapy (including new medicine). Thankfully, when the steroid is needed it will only be needed in spurts of a few days instead of twice a day for 29 days. We got through that leg of the journey. Can I get a sigh of relief? .....................
After the chemo and everything, I was seeing double and feeling a little paranoid about life. Enter Ann Thornton. She swept in and told me it was okay to go off on her if I needed to. I did. I went off and I prefaced everything I said with "I know I'm being irrational, but..." She listened and didn't try to talk me out of my craziness. Do you know how refreshing it is to be heard and not judged? Once I got it all out of my system, my heart felt like it shed its crusty layer of blah-ness. Oh. To have the freedom to molt in front of friends and still feel the love through that less than pretty experience. I am beyond lucky to have real friends. Thank you, Ann.
Last night was one of those silly putty nights sans the fun...It was just a mass of minutes being pulled thin but not breaking. Over and over the strands kept getting tugged, and a nervous ball of clay string remained. Gideon tossed and turned and moaned throughout the night. His body was shaking. He cried a lot, and when he was sleeping, the whimpering continued. Throughout this entire chemotherapy and cancer bout, Gideon has not had ONE accident. This includes the days he had ExLax! This is impressive for such a little guy. He made it to the toilet every time -- every explosive episode ended on the porcelain throne. Last night, through the tossing and turning and pain, Gideon wet through everything three times. The saddest part of all of this was how disappointed he was with himself. "I still a big boy, right mommy?" He asked me again and again with tears swelling in those baby blues. Something was wrong (besides the fact that my three year old has cancer, I mean).
Before we get to that: It seems as though this new world we've landed in has low-lows immediately followed by high-highs. There is no la-la-la middle. Not yet, anyway. I have never in my life felt bored, but I would adore that lazy feeling again. Anyway, after this heart quaking night, we got the call from Dr. Lobel that set off fireworks of jubilation: Gideon is in remission! M1 was attained since there were 5% or fewer leukemic cells in the marrow. PRAISE! Isn't that fabulous news? This means that we are going to wait on that MRD test for more information, but we are going to trudge forward in completely beating this disease. Many people have asked me since he is in remission, doesn't that mean that we can stop chemotherapy? The answer is no. New Leukemia cells would still be produced if we stopped the treatment now. But that doesn't stop us from celebrating this fabulous news! Gideon's next spinal chemotherapy is next Friday, and that marks the beginning of the next phase.
Today Gideon laid low and only wanted to rest. Watching him struggle to steady his hand enough to put his pancake in his mouth made me want to squeeze him. I wanted to take the shake out of him and into me. I wanted to soak it out of him so that I could be his buffer, and the stillness of calm would be all that remained. Gideon complained of his head hurting and every single joint, as well. He can hardly stand without collapsing. This is when the Wonderwoman gene is supposed to circulate through my system, but it was slower to arrive today. Gideon ended up with a fever. I took him into the Clinic and explained his bed wetting night, his aversion to the bathroom today, his body aches, his shaking... all of it. Come to find out, there was blood in Gideon's urine and a possible virus on top of that. So, prayers are needed once again. We were told that it most likely a kidney stone produced during the steroid infestation. Did I mention that I loathe steroids? Yes? Well, they are even more despicable to me now. Although, they are beyond important in the whole treatment process, and I hate cancer more.
So, please pray for an easy passing of this stone. I am pumping him full of fluid by telling him that the good fishies need more water to swim in inside of his body.
Miracles are still happening, and I will forever focus on those (even when it gets tough to do so). I am thankful for YOU since you are going through the journey with me.
P.S. Some people have asked how they can read old posts. Do do that, click on "June" on the right. All of my first posts are there.
Wednesday, July 14, 2010
My Cute Crabby Cake.
The gum in my mouth is stale and I'm WAY too tired to get up, truck all of the way to the garbage in the kitchen, and throw it away. Could someone come over and dispose of it, please? Kidding. I wouldn't have you do that... I'll just swallow it. Ha! I am so funny when my eyelids are demanding to become my own personal Great Wall of China to the world. This screen right now is fuzzy. Not blurry. Actually fuzzy like a white kitten with Times New Roman speckles. Maybe I should take a nap, huh?
Gideon and I started our day bright and early with the birdies. Nope. More like the bats. It was 12:30 in the morning and Gideon was ready to practice his all-you-can-eat techniques/strategies/battle plan for the DAY. My little honey should enroll in one of those contests: either an all-you-can-eat contest or a never-fall-asleep contest. Either-or. HOWEVER, this way of life is on the way OUT. WOOHOO! He took his last steroid last night and we celebrated with some dancing. Gideon likes me to hold him while dancing, and the workout is gradually becoming more intense. This is probably a good thing since that pizza at 4 in the morning always looks good to ME, too. Sympathy steroids... Who would've thought?
Here they are: My Cute Crabby Cake and his Sweetie of a Big Brother. My moment of sleep deprivation elation today was when Gideon was sitting on my lap on the top stair, lovingly looking into my eyes, and petting my face. We pet in my family. Anyway, he said, "I'm so happy you're here, Mommy. Could we go to the store so I can buy you flowers?" Ummm... Could you also pick up my heart from the bottom stair since it just swelled about a story in height? He even wanted to use his own money.
As you can see from the pictures above, we went to the store and he picked the brightest bouquet he could. The gem even said, "Are there daisies in this one? Those are your favorite!" Yes. He knows my favorites. He pays attention. Can you say "Husband of the Year" in twenty six years? Swoon. (That's if the steroid raging ends by then... Praying, ladies! He and his brother are mighty fi-ine catches.)
I'm hoping he embraces this euphoric persona throughout the night. This is the night of all nights, people. He has to FAST from 12 midnight on (that was redundant: "12 midnight" and I just took more time to explain my disapproval over this terminology rather than just backspacing. Keeping it. Even this tangent in parenthesis. Gotta stay real.)! No food or drink -- not even water. (Yes, I called and asked, mom). Nervous doesn't even begin to explain it. So, once again: This mommy is relying on complete strength from God. Please pray for me. If you can't sleep, please give me a call. If you can hear me over the screaming, we could have a great conversation. Great ideas often blossom from sheer exhaustion and a listening ear. But, I believe in miracles. This whole experience has taught me that they are possible and DO happen. My miracle prayer: That Gideon eats at 11:30, hits the pillow, and stays asleep until it is time to go to the Clinic. I believe, I believe, I believe! I found my FIRST four leaf clover yesterday when Gideon pointed at a clover flower he wanted me to pick. Do you know how many HOURS in my life I have dedicated to this quest of finding this four-leafed fable? Too many. It is mildly embarrassing. This includes my ADULT life. Anyway, I FOUND ONE in the millisecond of my child pointing his finger to the ground! So, I will also find a peaceful night sleep with Gideon, too. Anything can happen!
Please also pray for the spinal chemo that will be injected into my boy at 8:15 in the morning tomorrow morning. I pray for NO adverse reaction and that the drugs do what they are meant to do! So far, we are slaying sharks across this Cancer Battlefield. Let's get 'em all!
P.S. This is completely random, but please, please, PLEASE always pull over for ambulances. A teenage boy trying to impress his girlfriend on the way to the mall sped PAST an ambulance with its lights on and my blood has been boiling ever since. Okay. That was my public service announcement. I feel much better. Thank you for letting me rant. Also, if teenage boys are reading this: Girls are not impressed when you break laws. Especially if you break a law that could get in the way of saving a life. Okay. The tirade ends...........now. Thanks, again.
Monday, July 12, 2010
Change of plans... We go with the wind.
The weather and the treatment for cancer: no matter the predictions, sometimes it rains when it's supposed to be sunny and is sunny when it's supposed to rain. We can cry and mope and pout when it rains, or go splash in puddles and see just how muddy we can get. I've always been a fan of jumping in puddles. Just ask my mom (sorry about that Easter dress, mom... I was fashion forward. Somehow I knew those brown mud polka-dots would look lovely on light blue taffeta).
Tonight was supposed to be the starvation night before the intense chemo tomorrow (spinal, etc.), but we had a change in plans. Gideon was grouchier than normal on Sunday (yesterday), and I blamed the prolonged double daily dosage of steroids for this animosity for all living and inanimate objects within a twenty foot radius of him. He kept saying "OW!" throughout the day, and I would ask him what hurt, but I'd get, "NOTHING, mom! I'm FINE!" OoooOooo... a hormonal teenager at the tender age of three, huh? Anyway, that night I was changing him into his jammies and I noticed the band aid over his port had something seeping through. I took off the band aid and saw red rings around each of the puncture wounds from when he was accessed throughout the week. Each puncture had white in the middle and clear fluid seeping out. Sorry. I hope you're not eating. I immediately called the on-call Oncologist and was told to watch his temperature throughout the night. If a fever spiked, I was to go in. If not, I would have to go into the Clinic in the morning.
No fever all night was a great thing! When we went to the hospital, I was told that his blood count, the cancer, and all of the drugs makes it very difficult for Gideon's body to heal itself. It was a topical problem with "retarded healing" -- that is what the Oncologist called it (I will keep my thoughts to myself on that one)! So, we have topical antibiotics and Gideon's big chemo day will be Thursday instead of Tuesday. Wednesday night will now be the tired one. Well, more tired than normal...
Gideon did not like that Dr. Lobel had an owie on his hand, and decided to be HIS doctor. He put a band aid on his golf injury and the boy didn't stop smiling. He was being his lover of people this morning... my sweet boy. The nurse and the doctor were floored by Gideon's delightful banter and happy smile throughout this check-up. They said it is exceedingly rare for a child at this stage of the steroid treatment to be anything less than a monster. Of course they have not seen him at home, but it did my heart some good knowing that his positive nature and loving disposition trumps those chemicals coursing through his body (sometimes). Those glimpses keep me smiling, truly.
Sunday, July 11, 2010
A Monday night Request...
Another thing I treasure in this life are friends who can just be. They can just sit with you and the silence is more of a blanket than an oddity. Of course, to be honest, it is difficult for me to be silent. I have always admired those of you who can let your thoughts and musings remain a secret; however, I will forever struggle with this. BUT, there are those rare silent lulls that can either feel empty or they can ease the soul into peace. All of my closest friends are like that - they are my peace blankets. At the same time they are vivacious, funny, intelligent, and easy to just "be" with. And, two of my Milford friends (who are now really "Chicago friends") kidnapped me today for brunch (Heather Horton and Heather Wilson...and Wilson's baby, Grey!). Surprise, surprise! I chose "Food Dance Cafe." I think this is a theme. They also were given a ROCKSTAR performance by both Brody and Gideon. Gideon even broke out some new moves. Heather and Heather do that, as well: inspire an impromptu dance party. Thank you for being with me today and for understanding my Gideon's breakdowns. Knowing I'm never judged by how I respond to these breakdowns is so soothing to me. Mmmm... sweet lullaby blanket of friends...
This life has glimpses of lullabies and The Twilight Zone. Sometimes I have to open and shut my eyes a few times just to make sure this isn't an insane dream. It's not. My baby boy who loathed food, was only interested in playing and laughing and being busy-busy-busy, and loved to make people smile is now lethargic, food obsessed, and easily triggered into an angry rage. I know the nurses kept telling me to prepare for the day when I ask, "Who IS this child and where is mine?!" The day has arrived even though I didn't believe what I heard. I won't doubt you again, nurses. You KNOW your stuff! Tick-tock, steroids! Your days are numbered for this round.
Speaking of... Please send up prayers on Monday night. I am dreading this night. Gideon will not be allowed to eat or drink after midnight that night, and we all know about the new eating schedule: up at 2am and awake for the rest of the day eating, eating, eating! When he wakes up ready for his all-you-can-eat buffet, he will be so very upset when there is a refusal of service. Understatement, yes, but I am trying to be as up-up-up! as possible. Yes, it is safe to say that I will be coasting on your prayers since I will want to hide somewhere in my basement rather than dealing with my mini-Mr. Hyde!
This life has glimpses of lullabies and The Twilight Zone. Sometimes I have to open and shut my eyes a few times just to make sure this isn't an insane dream. It's not. My baby boy who loathed food, was only interested in playing and laughing and being busy-busy-busy, and loved to make people smile is now lethargic, food obsessed, and easily triggered into an angry rage. I know the nurses kept telling me to prepare for the day when I ask, "Who IS this child and where is mine?!" The day has arrived even though I didn't believe what I heard. I won't doubt you again, nurses. You KNOW your stuff! Tick-tock, steroids! Your days are numbered for this round.
Speaking of... Please send up prayers on Monday night. I am dreading this night. Gideon will not be allowed to eat or drink after midnight that night, and we all know about the new eating schedule: up at 2am and awake for the rest of the day eating, eating, eating! When he wakes up ready for his all-you-can-eat buffet, he will be so very upset when there is a refusal of service. Understatement, yes, but I am trying to be as up-up-up! as possible. Yes, it is safe to say that I will be coasting on your prayers since I will want to hide somewhere in my basement rather than dealing with my mini-Mr. Hyde!
Friday, July 9, 2010
My whining rant... Prepare for a Tinge of Debbie Downer, okay?
Before I start, come to MICHELLE'S GARAGE SALE TODAY! My kids clothes and her kids clothes are there, and we dressed our kids so darn CUTE! Address: 6593 Pleasantview Drive Portage, MI!
Just to let you know, I am typing this blog only because I told my kids I need to be in timeout or I will have a temper tantrum. Yes. They believe me. As they should. Normally I type when it is nap time or bed time, but those two terms are making me snicker a little bitterly right now. Terms that have to do with sleep make me a little hysterical.
Remember how I "couldn't wait" until the steroids kicked in the hunger button? Remember how I also said I would "roll my eyes" at myself later? Not only am I rolling my eyes at my naive past self, I am also talking behind her back. Previous clueless Amanda, you are now going to live out a day today of complete exhaustion. Did you know you were not only getting the hunger, but in some strange twist in plot, the hunger mechanism is strongest at night? Yup. ALllLLllLLll night. Those cute and sweet mini-feasts that once were have morphed into an all-night buffet. This is not an exaggeration, and I wish it was!
Every twenty minutes, a new food was requested throughout the night last night. TWENTY minutes (I couldn't believe it, either. And, I wish-wish-wish this was a product of my love for a good story, ala "Big Fish." Alas, it is not). He wanted everything. Everything you can think of... from grilled cheese to eggs to hamburger to WEIRD suggestions. One that made me think I really was losing my mind was when Gideon requested "strawberries soaked in tea." Yup. And now my kitchen mirrors that of a college frathouse.
Another discovery in this world of steroids is that if I do NOT have the food that was requested: screaming will commence until the food is somehow produced. I cannot believe we ran out of pepperoni pizza. That fit of screaming and gnashing of teeth and throwing bed covers lasted at least an hour. Finally, I somehow made a pizza out of a soft pretzel, herbs, tomatoes, cheese, and pepperoni. Desperate times makes you a Food MacGyver.
So, if you visit today I apologize if I try to pick a flower from your head or something. I am out of my mind exhausted. But I have coffee. I have Five Hour Energy potions. But, my supply is dwindling of both. Maybe I could escape to GROCERY SHOP! Woohoo! Maybe I should shower. Maybe I could invent some sort of inhalant that is released into the shower once the steam hits it. It would have the same effect as caffeine, but with less jitters, and all you need to do it breathe to let it permeate your system. Talk about easy. I guess I would need a chemist for that part, but... I digress.
JULY 13 is the LAST STEROID for this round, anyway. I will have a last steroid party with the family, I think. We will watch a marathon of Strong Man, go punch the punching bag for awhile, and do some push-ups. Fun party, huh? And the creativity button is off. Commence drooling.
...and pancakes were just suggested. I better get on that or things may start breaking.
I'll share one happy miracle to close... Gideon asked for his Shark Fighting Medicine this morning and went straight to his red medicine chair to battle 'em. Below is a picture of this EASY moment. I truly needed an easy moment. Phew.
Just to let you know, I am typing this blog only because I told my kids I need to be in timeout or I will have a temper tantrum. Yes. They believe me. As they should. Normally I type when it is nap time or bed time, but those two terms are making me snicker a little bitterly right now. Terms that have to do with sleep make me a little hysterical.
Remember how I "couldn't wait" until the steroids kicked in the hunger button? Remember how I also said I would "roll my eyes" at myself later? Not only am I rolling my eyes at my naive past self, I am also talking behind her back. Previous clueless Amanda, you are now going to live out a day today of complete exhaustion. Did you know you were not only getting the hunger, but in some strange twist in plot, the hunger mechanism is strongest at night? Yup. ALllLLllLLll night. Those cute and sweet mini-feasts that once were have morphed into an all-night buffet. This is not an exaggeration, and I wish it was!
Every twenty minutes, a new food was requested throughout the night last night. TWENTY minutes (I couldn't believe it, either. And, I wish-wish-wish this was a product of my love for a good story, ala "Big Fish." Alas, it is not). He wanted everything. Everything you can think of... from grilled cheese to eggs to hamburger to WEIRD suggestions. One that made me think I really was losing my mind was when Gideon requested "strawberries soaked in tea." Yup. And now my kitchen mirrors that of a college frathouse.
Another discovery in this world of steroids is that if I do NOT have the food that was requested: screaming will commence until the food is somehow produced. I cannot believe we ran out of pepperoni pizza. That fit of screaming and gnashing of teeth and throwing bed covers lasted at least an hour. Finally, I somehow made a pizza out of a soft pretzel, herbs, tomatoes, cheese, and pepperoni. Desperate times makes you a Food MacGyver.
So, if you visit today I apologize if I try to pick a flower from your head or something. I am out of my mind exhausted. But I have coffee. I have Five Hour Energy potions. But, my supply is dwindling of both. Maybe I could escape to GROCERY SHOP! Woohoo! Maybe I should shower. Maybe I could invent some sort of inhalant that is released into the shower once the steam hits it. It would have the same effect as caffeine, but with less jitters, and all you need to do it breathe to let it permeate your system. Talk about easy. I guess I would need a chemist for that part, but... I digress.
JULY 13 is the LAST STEROID for this round, anyway. I will have a last steroid party with the family, I think. We will watch a marathon of Strong Man, go punch the punching bag for awhile, and do some push-ups. Fun party, huh? And the creativity button is off. Commence drooling.
...and pancakes were just suggested. I better get on that or things may start breaking.
I'll share one happy miracle to close... Gideon asked for his Shark Fighting Medicine this morning and went straight to his red medicine chair to battle 'em. Below is a picture of this EASY moment. I truly needed an easy moment. Phew.
Thursday, July 8, 2010
You won't believe it, but...
We are going to play a game. It's called, "You won't believe it, but..." I will make a list of things that are strengthening my soul right about now. Some of them are huge and others are just sweetly baffling.
"You won't believe it, but..."
1. That cute little virtual fish tank to your right is interactive. Wave your mouse on top of the water and those little GOOD fishies come swarming. Click your mouse to feed them good fishy food so they can overpower sharks. The water even ripples. I think that is the effect that has locked me in. I will admit to overfeeding them.
2. I am easily amused.
3. We went to the Clinic this morning and Gideon ONLY had to get his chemo treatment. It is the FIRST time we have not needed a transfusion!
4. Gideon's ANC level is UP! HOORAY! His immune system is still off kilter due to the chemo and the cancer in general, but it isn't as scary low as before. Now I kind of want to apologize to those coughing girls at the parade who were the recipients of my stink-eye.
5. Mike Oslund checked the Paypal screen from shirts being ordered, and let's just say it was a GOOD first day of the sale. I cried when he emailed me the amount. All you shirt purchasers, bless you (everyone else, there's still time to order, but even if you don't: prayers work and THANK YOU for those)! And, MIKE: WOW! That is a lot to be responsible for and you have volunteered for a full-time job in receiving orders and shipping them out on August 7! I can't tell you how elated I feel in being able to donate that money to cancer research! My heart is on fire. All because of you giving people!
6. Ann Thornton now has a website to donate ONLINE for her Leukemia/Lymphoma Half Marathon. Here is the address: My Fundraising Page Someone anonymously donated 250 dollars today. WOW! It is VERY easy and safe to donate online. And Ann, you are one of my personal heroes to be doing something you hate for a cause that you love. Have I told you how much I adore you? I do.
7. I always judge an album based on the seventh track. If I like it, I will purchase the entire album instead of picking and choosing individual songs. This method has not failed me yet.
8. Gideon was a little comedian at the Clinic today. He had everyone laughing as he took the stage with his UNENDING anecdotes and tall tales. I HAVE to record him when he is on one of his rants. His language development has somehow warp sped forward recently. Steroids? I have no clue, but the boy is more articulate and beautifully detailed in his descriptions than ever before. Then there's that pinchable chubby-cheek factor adding to the quotient of cuteness. So, even if my eyes are glazed over and I am existing within the realm of delirium (due to the twenty five meals requested throughout the night...it's like having an infant again), I love this boy's expression and passion for life!
9. Gideon has gained three more pounds in the last week. That is a lot for a three year old... WOAH.
*** I'm sure I could add on to this list, but we'll stop there for now. I feel like journaling now. So, here it goes...
I have had MANY people ask me if and how I've changed in these last few short weeks and the answer is yes, I have changed but it hasn't been me in control of the changing. I still lip sync and pretend I'm putting on concerts in my kitchen, but other things have most definitely changed. So, since this has been such a common question, I'll just open up and answer it all here.
If there was ever a doubt that God is in control, all anyone has to do is to look at how I'm still standing. I promise, I am not standing on my own. There's something that makes me calmer and more still whenever Gideon's body is shaking. It's after chemo, always. He shudders and his words quiver. He licks his lips constantly, and his legs aren't as sure-footed as they once were. He can't get through a sentence without taking a deep breath, and it is a Marathon to get to the top of the stairs (but... I'm happy to say, he has made it to the third from the top with only the assistance of a handhold!). The more he shakes, the straighter I feel I stand. Seeing him like this, watching him walk on his heals because his toes "Feel like shots!", breaks my heart but makes me steadier at the same time. This juxtaposition of weakness and strength all at once is beyond anything I could ever explain. I am thanking God for that survival instinct he programmed into our mommy brains. I always thought that if my child were ever this sick, ever puked this much, ever experienced as much pain as he has endured these past few weeks, that I would crumble and die. God has had other plans, and in all honesty... I am shocked by them! Breakdowns happen. Pity-parties happen. But it is that elation that gets injected into my soul when I know (I KNOW!) Gideon will not only beat this, but he will be blessed by this experience. It is almost like I have to have a low moment to be jolted back to the highest of highs in knowing that this too shall pass (and, "This Too Shall Pass" by OK Go is playing in my head...good tune, so it is allowed to play all day in my head...if it wants). Gideon will always know the worth of this precious existence on earth, and if not, you better believe this momma will remind him! Someday, when I am super old and Gideon is an adult, we will go swimming with the sharks, and that boy is going to give those guys the death-stare. They will have sense enough to swim away, I promise. This has made the Before-I-Die List. I've been adding to that list a lot, lately... It's good to daydream.
My plans today: LIVE! Live and smile and breathe. Maybe I won't be able to get every little object into my neighbor's garage sale in time (thank you, Michelle Brinker!), but I will have put together puzzles with Brody and danced with Gideon. I will listen when he talks. If I was in a hurry to get to the breakfast dishes I would have missed the moment when Gideon put his chubby little hand on my cheek, love light glowing in his puffy eyes, asking wistfully, "Mommy, will you marry me? You are a Flower Princess." The rest of it really doesn't matter in the scheme of things.
The uncanny calm that can only be God-given is the way I feel I have changed the most. Little things bother me even less than they did before (this can be a good OR a bad thing...depending upon who you are asking), and I realize how lucky I am in comparison to so many others I have met at the Clinic. The rest is definitely unchanged. Who wants to go dancing soon?
"You won't believe it, but..."
1. That cute little virtual fish tank to your right is interactive. Wave your mouse on top of the water and those little GOOD fishies come swarming. Click your mouse to feed them good fishy food so they can overpower sharks. The water even ripples. I think that is the effect that has locked me in. I will admit to overfeeding them.
2. I am easily amused.
3. We went to the Clinic this morning and Gideon ONLY had to get his chemo treatment. It is the FIRST time we have not needed a transfusion!
4. Gideon's ANC level is UP! HOORAY! His immune system is still off kilter due to the chemo and the cancer in general, but it isn't as scary low as before. Now I kind of want to apologize to those coughing girls at the parade who were the recipients of my stink-eye.
5. Mike Oslund checked the Paypal screen from shirts being ordered, and let's just say it was a GOOD first day of the sale. I cried when he emailed me the amount. All you shirt purchasers, bless you (everyone else, there's still time to order, but even if you don't: prayers work and THANK YOU for those)! And, MIKE: WOW! That is a lot to be responsible for and you have volunteered for a full-time job in receiving orders and shipping them out on August 7! I can't tell you how elated I feel in being able to donate that money to cancer research! My heart is on fire. All because of you giving people!
6. Ann Thornton now has a website to donate ONLINE for her Leukemia/Lymphoma Half Marathon. Here is the address: My Fundraising Page Someone anonymously donated 250 dollars today. WOW! It is VERY easy and safe to donate online. And Ann, you are one of my personal heroes to be doing something you hate for a cause that you love. Have I told you how much I adore you? I do.
7. I always judge an album based on the seventh track. If I like it, I will purchase the entire album instead of picking and choosing individual songs. This method has not failed me yet.
8. Gideon was a little comedian at the Clinic today. He had everyone laughing as he took the stage with his UNENDING anecdotes and tall tales. I HAVE to record him when he is on one of his rants. His language development has somehow warp sped forward recently. Steroids? I have no clue, but the boy is more articulate and beautifully detailed in his descriptions than ever before. Then there's that pinchable chubby-cheek factor adding to the quotient of cuteness. So, even if my eyes are glazed over and I am existing within the realm of delirium (due to the twenty five meals requested throughout the night...it's like having an infant again), I love this boy's expression and passion for life!
9. Gideon has gained three more pounds in the last week. That is a lot for a three year old... WOAH.
*** I'm sure I could add on to this list, but we'll stop there for now. I feel like journaling now. So, here it goes...
I have had MANY people ask me if and how I've changed in these last few short weeks and the answer is yes, I have changed but it hasn't been me in control of the changing. I still lip sync and pretend I'm putting on concerts in my kitchen, but other things have most definitely changed. So, since this has been such a common question, I'll just open up and answer it all here.
If there was ever a doubt that God is in control, all anyone has to do is to look at how I'm still standing. I promise, I am not standing on my own. There's something that makes me calmer and more still whenever Gideon's body is shaking. It's after chemo, always. He shudders and his words quiver. He licks his lips constantly, and his legs aren't as sure-footed as they once were. He can't get through a sentence without taking a deep breath, and it is a Marathon to get to the top of the stairs (but... I'm happy to say, he has made it to the third from the top with only the assistance of a handhold!). The more he shakes, the straighter I feel I stand. Seeing him like this, watching him walk on his heals because his toes "Feel like shots!", breaks my heart but makes me steadier at the same time. This juxtaposition of weakness and strength all at once is beyond anything I could ever explain. I am thanking God for that survival instinct he programmed into our mommy brains. I always thought that if my child were ever this sick, ever puked this much, ever experienced as much pain as he has endured these past few weeks, that I would crumble and die. God has had other plans, and in all honesty... I am shocked by them! Breakdowns happen. Pity-parties happen. But it is that elation that gets injected into my soul when I know (I KNOW!) Gideon will not only beat this, but he will be blessed by this experience. It is almost like I have to have a low moment to be jolted back to the highest of highs in knowing that this too shall pass (and, "This Too Shall Pass" by OK Go is playing in my head...good tune, so it is allowed to play all day in my head...if it wants). Gideon will always know the worth of this precious existence on earth, and if not, you better believe this momma will remind him! Someday, when I am super old and Gideon is an adult, we will go swimming with the sharks, and that boy is going to give those guys the death-stare. They will have sense enough to swim away, I promise. This has made the Before-I-Die List. I've been adding to that list a lot, lately... It's good to daydream.
My plans today: LIVE! Live and smile and breathe. Maybe I won't be able to get every little object into my neighbor's garage sale in time (thank you, Michelle Brinker!), but I will have put together puzzles with Brody and danced with Gideon. I will listen when he talks. If I was in a hurry to get to the breakfast dishes I would have missed the moment when Gideon put his chubby little hand on my cheek, love light glowing in his puffy eyes, asking wistfully, "Mommy, will you marry me? You are a Flower Princess." The rest of it really doesn't matter in the scheme of things.
The uncanny calm that can only be God-given is the way I feel I have changed the most. Little things bother me even less than they did before (this can be a good OR a bad thing...depending upon who you are asking), and I realize how lucky I am in comparison to so many others I have met at the Clinic. The rest is definitely unchanged. Who wants to go dancing soon?
Wednesday, July 7, 2010
THIS is where the shirt ordering happens! GO TEAM GOOD FISHIES!
(The above shirt also comes in light blue)
I think I need to dedicate an entire blog post to this shirt business. Here's a list of facts about the shirt ordering:
* All proceeds will go towards fighting childhood cancer, and I will blog the ultimate amount that was donated through this shirt buying endeavor.
* These amazing people helped make this come to be (I did NONE of it): Mike Oslund, Matt Poniatowski, Brandon Faron, and Mark Laidlaw.
* If you do not have PayPal, Mike offered to have checks sent to him with your order. He will send you your shirt. That being said, I promise you Mike is VERY trustworthy and the LAST thing he would ever do under the sun is steal money that is meant to benefit children with cancer. I've known him since high school, and he is now a very successful dentist (so he doesn't need your money, anyway... :)). I probably didn't even have to add this little bulleted fact, but for any suspicious doubters, I just wanted to put your hearts and minds at ease. His email is mikedoslund@gmail.com. THANK YOU!
* If you choose the "Multiple Shirts" button or the "Multiple Colors" button, then you have to write a note when you checkout of PayPal letting Mike know what sizes and colors you want.
* Shirts can be ordered in blue or yellow. (Blue because it is pretty and yellow because that is Gideon's favorite color and he would ONLY wear yellow scrubs in the hospital... "Like the SUN!")
* THE DEADLINE FOR ORDERING SHIRTS IS.................... SATURDAY, AUGUST 7, 2010!
* Please scroll down to place your order, and thank you for your beautifully giving heart and gorgeous soul! We love you! Someday childhood cancer and cancer in general will be OBSOLETE (yes! I said it, mean it, and BELIEVE it!)! By the way, the little rectangle with the question mark in it is the link to Paypal to complete your order...
Tuesday, July 6, 2010
Puffy cheeks
Yes. That is Gideon. His face has puffed up tremendously from the steroids. For a little while he looked like a full-cheeked healthy boy, but now he looks like Hollywood tried their hand at adding jowls to his cheeks and a dangling wattle. His little eyes are slivers now and when he talks, his voice is a little distorted from the extra fluff. This is not meant in disrespect, but you know that old joke from our childhood that goes, "Hi. I'm chubby. My mama's chubby, my daddy's chubby, and IIIIIIIII'm chubby. Mama said chubby people can't smile, but I'll show her... (insert chubby smile here and listen for the 3rd grade giggles)..." That one. Or maybe that was a sister joke that Aimee made up (she was and is the funniest and most beautifully ridiculous big sister on the planet). Anyway, you tell that joke mushing your cheeks forward with your hands. Try it. Mush 'em and talk. Well, that's how Gideon sounds. There's that little chubby echo in there. A little swollen morphing of syllables. But I hang on every sound still, I promise.
I watched "Alice in Wonderland" this weekend (the Tim Burton one) and adored it. (This is a sidenote for my baby sister, Annie: Johnny Depp's dance at the end did NOT ruin it. I loved that part...) I can't look at Gideon without seeing the Queen of Hearts and her large head. Gideon is still itty-bitty elsewhere (besides the gas belly tummy), so it is so strange to see him like this. When people come over, he beats them to the chase by saying, "Look at my BIG cheeks! Mommy kisses 'em." Yes, he adds in dashes of adorable at every turn in this cancer fight.
We had a happy weekend, mostly. Gideon has his moments of anger, but he is now internalizing his behavior when he hurts people's feelings and once he comes to his senses, it is heart-shattering. He hit his Oma this weekend who made him a grilled cheese sandwich and "CUT IT WROOOOOOOOOOONG!" I looked at him and said, "Gideon! We do NOT hit!" Once he was over his breakdown and ate the sandwich, totally unprompted he said, "Oma. I sorry I hit you. It was a..." (bottom lip trembles) "a...aaa...ACCIDENT! I so sorry, Oma! You ma-a-ad at me?" More sobbing and broken heart hiccups. Oh. Gideon. He does not understand how the medicine is affecting his emotions. He can grasp sharks and fighting sharks, but he doesn't understand this newfound need to unleash on people.
PLEASE SEE MY NEXT BLOG ABOUT ORDERING "NO SHARKS!" T-SHIRTS! THANK YOU!
Saturday, July 3, 2010
HAPPY FOURTH OF JULY! (Hooray, America!)
HAPPY FOURTH, everyone! This Independence Day my pride for my country and my love for our ways is more potent than ever. I will wear my red, white and blue with a newfound devotion. All I can think about are children in other countries where getting to a hospital at all, let alone getting to a well-equipped hospital, is impossible. Those mommies love their babies just as much as I do, yet if a disease like cancer befell one of their little ones, the prognosis would always be death. But here, in America, not only was the disease caught quickly, but we will be able to cure it! We live only minutes away from three astonishingly knowledgeable Oncologists having earned their PhD from John Hopkins (Dr. Lobel), Harvard (Dr. Elliot), and University of Michigan (Dr. Mullins)...and I can call them at any hour of the night. I am overwhelmed with blessings for simply being born in this nation of ours. "The Land of the Free and the Home of the Brave" is now dripping with thick, new and powerful connotations for me. United States of America, you have made a sappy girl even sappier. Tears at the fireworks will be inevitable! I am madly in love with you.
We celebrated the Fourth of July a day early in Kalamazoo, well, Portage and Schoolcraft. Even though Gideon's numbers are down and his ability to fight infection is at an all-time low, we were able to make it to Schoolcraft's parade! We put a baby pop-up tent in a wagon, nestled Gideon in there with a face mask and towels, and rolled him to a spot where Tom's parents roped off (so that germy people would stay away). Nothing was sweeter than when two fighter jets roared over our heads and Gideon screamed, "AWWWWWWEEEEEESSSSOOOOOMMMMMME!" at the top of his lungs. His eyes caught that Gideon fire and it lasted all afternoon. Yes, I cried. Then, two girls collecting candy next to us started to cough and we were OUT of there. Germs are cousins to sharks, in my opinion. I have no tolerance for them anymore. To think that just a few short weeks ago I encouraged my kids to roll around in the tubes at McDonalds. Ew.
Gideon requested we have a picnic, so we grilled out and had turkey burgers and watermelon in the shade. Gideon and Brody talked up a storm the entire time to one another. They were bringing up all of the cool things they saw and heard at the parade, and my heart could not have been more full. One funny moment was when I asked Brody to eat more of his burger (I don't need to ask Gideon that anymore...Thank you, Steroids) and Brody retorted, "No."
Gideon about dropped his fork and took in a sharp inhale of disgust... "BRODY!" he scolded, "My angel says you ALWAYS listen to MOMMA!" Hahahahaha!
I asked, "Who told your angel that?"
Gideon answered, "GOD! You should listen, Brody..." said in his best mama-sing-song voice of warning. Fall-over-adorable, yes?
Brody ate his burger. Well, half of it. :)
Another moment that was over-the-top precious was when Gideon was starting to get tired and grumpy. I asked him a question, I don't even remember what the question was now, and Gideon barked, "LEAVE ME ALONE, MAMA!" (Where was his angel on that one? Kidding, angel. Don't be mad. I'm on your side.) I must have looked hurt because he said, "I'm sorry, mommy. I just wanna be crabby a minute, okay?" HAHAHAHA! Well, okay then. I know how THAT feels.
After exerting so much of that Gideon spunk and only a fleeting glimpse of the altered Gideon, he was tuckered out. He slept for about three hours and forty five minutes... Which was great, because the NEXT thing we were gearing up for was the fireworks! And yes, Gideon was going to be able to watch!
I was so tempted to bring Lysol and spray it as I pulled Gideon in its wake of bacteria/germ fighting power, but I resisted. That is not even a joke. I really and truly thought about it...especially after the two coughing girls at the parade. (Why do I feel an intense anger towards them? Sheesh. I guess that would be the Mama Bear, huh?)
Tom pulled some strings so that we could park in the handicap lot, and since Brody and Tom got there earlier, we were able to sit in total seclusion by the yellow caution tape. It was magical and perfect. Gideon may have commented more on the "smoke" from the fireworks than the fireworks themselves, but he did adore the "Mickey Mouse fireworks" (three circles...I'm sure you already got that, but just in case). Once we got home, Gideon said, "I wish Papa and Grandma Max was there." I asked him if he remembered watching fireworks in Grand Marais last year and he said, "Yes! We walked through tall weeds to the water!" He remembered the tradition, and we hope that tradition will be lived out again next year... Especially when we celebrate "The Polish Fourth of July" -- that may be better than the real one, in my opinion :).
Have a beautiful holiday, everyone! Our family sure did...
We celebrated the Fourth of July a day early in Kalamazoo, well, Portage and Schoolcraft. Even though Gideon's numbers are down and his ability to fight infection is at an all-time low, we were able to make it to Schoolcraft's parade! We put a baby pop-up tent in a wagon, nestled Gideon in there with a face mask and towels, and rolled him to a spot where Tom's parents roped off (so that germy people would stay away). Nothing was sweeter than when two fighter jets roared over our heads and Gideon screamed, "AWWWWWWEEEEEESSSSOOOOOMMMMMME!" at the top of his lungs. His eyes caught that Gideon fire and it lasted all afternoon. Yes, I cried. Then, two girls collecting candy next to us started to cough and we were OUT of there. Germs are cousins to sharks, in my opinion. I have no tolerance for them anymore. To think that just a few short weeks ago I encouraged my kids to roll around in the tubes at McDonalds. Ew.
Gideon requested we have a picnic, so we grilled out and had turkey burgers and watermelon in the shade. Gideon and Brody talked up a storm the entire time to one another. They were bringing up all of the cool things they saw and heard at the parade, and my heart could not have been more full. One funny moment was when I asked Brody to eat more of his burger (I don't need to ask Gideon that anymore...Thank you, Steroids) and Brody retorted, "No."
Gideon about dropped his fork and took in a sharp inhale of disgust... "BRODY!" he scolded, "My angel says you ALWAYS listen to MOMMA!" Hahahahaha!
I asked, "Who told your angel that?"
Gideon answered, "GOD! You should listen, Brody..." said in his best mama-sing-song voice of warning. Fall-over-adorable, yes?
Brody ate his burger. Well, half of it. :)
Another moment that was over-the-top precious was when Gideon was starting to get tired and grumpy. I asked him a question, I don't even remember what the question was now, and Gideon barked, "LEAVE ME ALONE, MAMA!" (Where was his angel on that one? Kidding, angel. Don't be mad. I'm on your side.) I must have looked hurt because he said, "I'm sorry, mommy. I just wanna be crabby a minute, okay?" HAHAHAHA! Well, okay then. I know how THAT feels.
After exerting so much of that Gideon spunk and only a fleeting glimpse of the altered Gideon, he was tuckered out. He slept for about three hours and forty five minutes... Which was great, because the NEXT thing we were gearing up for was the fireworks! And yes, Gideon was going to be able to watch!
I was so tempted to bring Lysol and spray it as I pulled Gideon in its wake of bacteria/germ fighting power, but I resisted. That is not even a joke. I really and truly thought about it...especially after the two coughing girls at the parade. (Why do I feel an intense anger towards them? Sheesh. I guess that would be the Mama Bear, huh?)
Tom pulled some strings so that we could park in the handicap lot, and since Brody and Tom got there earlier, we were able to sit in total seclusion by the yellow caution tape. It was magical and perfect. Gideon may have commented more on the "smoke" from the fireworks than the fireworks themselves, but he did adore the "Mickey Mouse fireworks" (three circles...I'm sure you already got that, but just in case). Once we got home, Gideon said, "I wish Papa and Grandma Max was there." I asked him if he remembered watching fireworks in Grand Marais last year and he said, "Yes! We walked through tall weeds to the water!" He remembered the tradition, and we hope that tradition will be lived out again next year... Especially when we celebrate "The Polish Fourth of July" -- that may be better than the real one, in my opinion :).
Have a beautiful holiday, everyone! Our family sure did...
Friday, July 2, 2010
My heart and mind is in Grand Marais, MI in the gorgeous Upper Peninsula with my entire family. My grandpa's funeral was today as was my baby sister's 21st birthday. I am sending my warm memories of grandpa via telepathy to the rest of the family, and I promise to plant something amazing next to grandpa's grave once we are allowed to travel. Grandpa taught me about gardens and the love that goes into them. He also taught me how to feel the beat of a song and how to drive a car. Every summer day during break, we drove down to Adam's Trail and back when I was fifteen. As we passed stretches of forest, Grandpa would share stories about Grand Marais' past, and his own past. I will always remember our one-on-one times... From early morning donuts (my family sent me "up the hill" to Grandpa and Mana's since I woke up too early and way too cheery as a little one) to those drives, Grandpa and his stories will play again and again in my heart and my head completely drenched in love and warmth. Love you, Grandpa! Love you, Krempa and Soldenski family!
Grandpa was probably laughing at me as I yelled at Mr. Coffee this morning, as in my coffee maker. I actually felt my adrenaline kicking as I shouted, "Hurry UP!" That'll show 'im, huh? Once I realized that I was bossing around inanimate objects, the fog started to clear a tiny bit. It is still foggy in this noggin of mine, but I will let myself be hazy today. I'm granting myself permission.
Last night was a tough one. Gideon got up many, many times to use the bathroom. He also requested a hamburger at 3am. Once I brought him the burger, he changed his mind and wanted pizza sticks. Then, more bathroom. Again. And again. And again. By the time 6am rolled around, my little one was wide awake. Like a broken record he kept yelling, "MOMMY! PLEASE get me a new monster truck!" I'm wondering if maybe he thinks toys just come to him in the night the way food has (recently).
Once we were all out of bed, I won't say awake since we were awake all night, Gideon requested eggs and bacon. In my dazed state, I got busy. Once I placed Gideon's feast before him, he screamed, "I don't wanna eat THA-AT! I want HOT DOGS!" Oh. I stormed into the kitchen muttering my annoyances left and right. Brody was sweetly coloring in the same room and said, "Mommy, don't be mad at Gideon. It is his medicine, remember? He is still Gideon." So, my eldest granted me a life lesson today. I needed that snap-me-out-of-it while I was dousing myself into my downer self-pity pool party. After having about 3 hours of sleep total, Mr. Coffee felt my annoyance. Sorry, Mr. Coffee. You have only helped me today. I guess it's true that we take out our frustrations on those we love the most, huh?
Gideon got another headache and slept for a couple of hours before we left for the clinic today. Once we were on our way, his headache subsided, and I'm convinced that was the result of Cathy DeVries' impromptu call and prayer. Brody spent his day perfecting his Spiderman costume and scaling buildings aka the fort outside. Gideon and I are currently finishing up his plasma transfusion (while watching Alvin and Chipmunks) and Brody is swimming at the Thornton's house. I am guzzling my Diet Coke and really would like the caffeine IV I had as soon as Brody was born (remember that, family? Funny times. I kept saying, "How come new moms complain about being tired? This is SO easy!" Hahhaha... Ignorance definitely is bliss, huh?).
To balance the horrendous night, I need to say that yesterday evening was the BEST evening since this diagnosis. Gideon helped Brody set the table and then the two of them sat down and played on the floor together. While their new Super Heroes battled one another (thank you, Deb Milka), I fought back tears and forced myself to video the moment in my heart. It is filed away for those moments when Gideon's altered persona rages against his brother and best friend. They were best friends again in this moment, and I savored it.
Ummm... I was just interrupted in a fabulous way! Nurse Jean, Nurse Gaye, and Dr. Mullins came in and serenaded us. Have I gushed enough about the staff here at the Clinic? If I haven't, I am now. They made me laugh so hard. I needed that laugh. Oh, endorphins! Please stay! Feel free to sing along with the following song to the tune of "You are my Sunshine"...
Constipation
(by Betsy, the Music Therapist)
You're feeling gassy
Can't seem to go
Your belly's straining
about to blow
You are impacted
and feeling blue
constipation has got a hold of you!
Sometimes there's bloating
and belly aches
a lack of fiber
is all it takes
you need a softener
or milk of mag
Constipation, has made your life a drag!
Suppositories
May set you free
When on the toilet
you only pee (<-- PREACH IT! That was last night!)
Don't be discouraged
there's help for you
if the time comes when you cannot poo!
Thursday, July 1, 2010
The first haircut... a pictorial story.
Thank you, Jen Wassink, for not only coming over to do this, but wearing a mask incase there were germs on you! Everyone else with hair, have you booked your next hair appointment with her at MSpa yet? She has a heart of gold. I love her.
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