Well I have to say, I barely realized so many days passed since I wrote last.
I had a surprise migraine for almost 4 straight days with a little still on the 5th day.
I'm pretty sure the different bed I sleep in , the amount of driving and sitting in the hospital is not helping.. I never sit this much.. However were all on a germ lockdown, I guess you would say, this entire floor isn't allowed anywhere except their rooms because of the germs and low ANC levels (immune system).
The nurses come in with gowns and they take them off and throw them out every single time they enter as well as washing hands coming in and going out, both with soap and sanitizer. I'm not even allowed to warm up my tea without asking someone to do it for me.
Zak has about had it here in the hospital, he wants to breathe AIR so bad its driving him crazy. They haven't let go outside his room since ICU last week for fear of infections.
Today looks like he might be free'd for a few days so he can go to his apartment and just get outside for a few days before. Everyday the rounds of Dr.s come by and he waits for the ANC numbers and I can see the look on his face and the energy immediately changes to frustration and claustrophobia... "mom I need to get out of here".... Oh my gosh its so painful to watch and see as I go in and out to get air myself. He is amazing to with stand all he is, I know there are days he just wants to go run out of here and breathe and be normal for a moment.
We stayed up late last night playing Monopoly and although we had fun and listened to music and where able to get some time to pass ...
After awhile he leaned back and said to me, " I don't think I can do one more day!"
My mommy words and all I could come up with was....
" In the grand scheme of this whole process its a small amount of time from your life that we will get through , so you have a LONG life ahead to enjoy."
I have my two dogs with me in the car that I take out every two hours and I was on my way out and he said... "I want to gooooo," ughghgh my heart broke the way he said it and needed so bad to just go outside.. the boy was raised to be outside, we never stayed still inside, we puddled jumped in the rain, rode bikes and played in parks and walked during all times of years and all times of days.
Since I can totally understand the feeling of wanting to get out,, I can't imagine any words really make it better... I'd be looking for an escape route to breathe air by now, he's been as patient as you could possibly expect.
Wednesday, November 20, 2013
Saturday, November 9, 2013
Warrior misses his party!!
PHONES ARE NOT WORKING ............
Zak's big 21 year old party is tonight, the celebration will be for the Warrior this year not with the Warrior. I'm staying with Zak and close by the hospital. I made it very clear from the start, if my boy is in the hospital I won't be there.
So here I am .. Thank you SO MUCH to all who are there supporting Zak and his cause, it means so much to us that you all are so willing to help Zak get through this. I don't know how people do this without support of so many wonderful people.
Zak's ANC is still at 0 (no immune), so as his mom I'm thankful he is in a safe place until that spikes a little and gives a bit of cushion to be in this wild world.
On my way to the hospital I called Zak to see what he wanted," cold fruit and sparkling juice" he said. So I went to our favorite health food grocery store and got him a few choices and some yummy organic fruit. Washed that stuff up and served it to him on a brown paper plate..( imaginary silver platter lets say).
Then I went to make my calls to all the kids, and couldn't get anyone.... towers are down until TOMORROW... yikes....................................NOWAY!!!!
What happen before cell phones and technology came into our lives?
....... panic set in, is our bill paid, what if , what if what if Zak was at home and this happened. OH MY GOSH,, I started sweating and having a panic attack thinking what an emergency this was and my son was already safe in the hospital.
I could text and I frantically text my husband, HUNNI HUNNI HUNNI I cant call Zak our phones are crazy, at&t is going to hear me roar, help hunni help! lol , His answer," I'm on it!"
Thank GOD for him, he has come through so much for me, through frantic calls, balling moments, mad moments, sad ones and moving away for awhile (that part is probably his favorite because he can sleep , without me saying, "hunni quit snoring" and an elbow in his side.) lol
Self talk," Ok. Kerri. can you just breathe and quit panicking , that won't help and Zak is safe and so is everyone else."
Dr. rounds started the day here at the hospital, so we could hear all the updates on tests and his counts. Things I feel like I may be getting in this thick skull now, lol. Routine, consistency and listening.
Breathing, staying on task and in the moment so I can pay attention.
I spent as usual every two hours walking my lil furry best friends and giving them loves and treats..
Today I met a few kids and parents in the family kitchen . One that sticks in my mind was a man from Yakima that JUST found out his daughter as ALL (Leukemia) , he was in a frenzy and having a hard time.
We talked for a bit and he said, "this is my first week here and the Dr.s said she has 80% chance of living". He proceeded to tell me his story... this is what he said....
FRANTICALLY HE SPOKE..... " I drive from the tri cities here on weekends and her mother is getting housing near by that she qualifies for. I'm in a hotel at a discounted rate of $85 a night with our son. They said she only has 80% chance of living. Her mother has a new baby that's one year old and we have two sons together that are young as well. I work in construction and I can't concentrate and I work high up , and now I am trying to think about where I am and I can't think. "
He said all this in about one breathe, I TOTALLY understood!
The GREATEST part was I was calm and had already weathered a few storms and was in a place I could calm him and talk him through a few things. I felt like all that listening that wasn't sticking , really did stick and I was able to make sense of some things for him.
The other part was 80%?, OH DO I remember the day I heard all the numbers, I drank a whole bottle of wine( one glass is enough so you can imagine) that night while cooking up meals for the Zak at my daughter's house. I never have experienced so much pain in my life as I did that day, (since then I have experienced a few more life altering painful moments).
OH DO I REMEMBER! I knew exactly what he felt... HOWEVER for me I have not only faith higher than the skies, I also have an amazing support of friends and family that ROCK MY WORLD and keep reminding me who I am , what GOD is capable of and direct me back to where I need to be.
What I remembered in that moment was my friend Erin Carlson, a friend for so many years and her words to me after finding out 1% of ALL (acute lymphoblastic leukemia) patience have a chromosome issue called IAMP21 and MY son was that statistic and he needed to be treated as HIGH RISK and very intensely... and on and on with statistics etc.
She said , " Those are easy numbers for GOD, he's got this." I know she said it a little more elegantly than that but it released a worry and put me in a place of EXPECTING and RECIEVING GOD's Grace and his desire to give me the desires of my heart. SO I am knowing that all will be great, GOD gave me to Zak as his mom and I will not stop for one minute until this child is ON HIS FEET and dancing again and living the life he was meant to live.
I am so blessed to be a mother of 4 and when God so lovingly trusted me with these lives I have NEVER ever questioned his trust in my ability to be their MOM. NOTHING Has ever come before it!
AGONIZOMAI ( this is a tattoo on my arm) I live by it.. I challenge you to look it up...
Sorry for spelling and punctuation craziness,,, Don't look at it as punctuation and spelling needs to be corrected... look at it as that's how I am talking.... its my passions, intensity and life and every comma and .... is my way of expressing myself.. So all of you who have never met me ... I am a little bit energetic and I am passionate about everything I do or I don't do it.
Zak's big 21 year old party is tonight, the celebration will be for the Warrior this year not with the Warrior. I'm staying with Zak and close by the hospital. I made it very clear from the start, if my boy is in the hospital I won't be there.
So here I am .. Thank you SO MUCH to all who are there supporting Zak and his cause, it means so much to us that you all are so willing to help Zak get through this. I don't know how people do this without support of so many wonderful people.
Zak's ANC is still at 0 (no immune), so as his mom I'm thankful he is in a safe place until that spikes a little and gives a bit of cushion to be in this wild world.
On my way to the hospital I called Zak to see what he wanted," cold fruit and sparkling juice" he said. So I went to our favorite health food grocery store and got him a few choices and some yummy organic fruit. Washed that stuff up and served it to him on a brown paper plate..( imaginary silver platter lets say).
Then I went to make my calls to all the kids, and couldn't get anyone.... towers are down until TOMORROW... yikes....................................NOWAY!!!!
What happen before cell phones and technology came into our lives?
....... panic set in, is our bill paid, what if , what if what if Zak was at home and this happened. OH MY GOSH,, I started sweating and having a panic attack thinking what an emergency this was and my son was already safe in the hospital.
I could text and I frantically text my husband, HUNNI HUNNI HUNNI I cant call Zak our phones are crazy, at&t is going to hear me roar, help hunni help! lol , His answer," I'm on it!"
Thank GOD for him, he has come through so much for me, through frantic calls, balling moments, mad moments, sad ones and moving away for awhile (that part is probably his favorite because he can sleep , without me saying, "hunni quit snoring" and an elbow in his side.) lol
Self talk," Ok. Kerri. can you just breathe and quit panicking , that won't help and Zak is safe and so is everyone else."
Dr. rounds started the day here at the hospital, so we could hear all the updates on tests and his counts. Things I feel like I may be getting in this thick skull now, lol. Routine, consistency and listening.
Breathing, staying on task and in the moment so I can pay attention.
I spent as usual every two hours walking my lil furry best friends and giving them loves and treats..
Today I met a few kids and parents in the family kitchen . One that sticks in my mind was a man from Yakima that JUST found out his daughter as ALL (Leukemia) , he was in a frenzy and having a hard time.
We talked for a bit and he said, "this is my first week here and the Dr.s said she has 80% chance of living". He proceeded to tell me his story... this is what he said....
FRANTICALLY HE SPOKE..... " I drive from the tri cities here on weekends and her mother is getting housing near by that she qualifies for. I'm in a hotel at a discounted rate of $85 a night with our son. They said she only has 80% chance of living. Her mother has a new baby that's one year old and we have two sons together that are young as well. I work in construction and I can't concentrate and I work high up , and now I am trying to think about where I am and I can't think. "
He said all this in about one breathe, I TOTALLY understood!
The GREATEST part was I was calm and had already weathered a few storms and was in a place I could calm him and talk him through a few things. I felt like all that listening that wasn't sticking , really did stick and I was able to make sense of some things for him.
The other part was 80%?, OH DO I remember the day I heard all the numbers, I drank a whole bottle of wine( one glass is enough so you can imagine) that night while cooking up meals for the Zak at my daughter's house. I never have experienced so much pain in my life as I did that day, (since then I have experienced a few more life altering painful moments).
OH DO I REMEMBER! I knew exactly what he felt... HOWEVER for me I have not only faith higher than the skies, I also have an amazing support of friends and family that ROCK MY WORLD and keep reminding me who I am , what GOD is capable of and direct me back to where I need to be.
What I remembered in that moment was my friend Erin Carlson, a friend for so many years and her words to me after finding out 1% of ALL (acute lymphoblastic leukemia) patience have a chromosome issue called IAMP21 and MY son was that statistic and he needed to be treated as HIGH RISK and very intensely... and on and on with statistics etc.
She said , " Those are easy numbers for GOD, he's got this." I know she said it a little more elegantly than that but it released a worry and put me in a place of EXPECTING and RECIEVING GOD's Grace and his desire to give me the desires of my heart. SO I am knowing that all will be great, GOD gave me to Zak as his mom and I will not stop for one minute until this child is ON HIS FEET and dancing again and living the life he was meant to live.
I am so blessed to be a mother of 4 and when God so lovingly trusted me with these lives I have NEVER ever questioned his trust in my ability to be their MOM. NOTHING Has ever come before it!
AGONIZOMAI ( this is a tattoo on my arm) I live by it.. I challenge you to look it up...
Sorry for spelling and punctuation craziness,,, Don't look at it as punctuation and spelling needs to be corrected... look at it as that's how I am talking.... its my passions, intensity and life and every comma and .... is my way of expressing myself.. So all of you who have never met me ... I am a little bit energetic and I am passionate about everything I do or I don't do it.
Friday, November 8, 2013
DAY AFTER ICU visit
Ok well its about 7:35 pm and we are now out of ICU on the familiar floor we are quickly getting
too familiar with.
I left for a bit earlier today to walk my dogs(yes they are with me 2 of my 4 and they keep me sane, comfort me and love me and get me out for walks) and when I came back I asked Zak ,"you all done, ready for Disneyland?" He nodded "YES"
and smiled..
Awe that smile...
Anything for a smile.. I'd sing for him but I'm trying to be somewhat quiet so I am not crowding him. My children ALL came by that honestly," Don't crowd me"," don't stand over me". We all love our space and also love each other around , go figure.
What a fine line we walk with grown children, you can get kicked out, told to leave, your in the way, you bug me, stop talking, sit down, move, I can do it myself, I don't need help.. etc.. Zak has been super patient with me and I have learned if I'm somewhat quiet, don't get in his way and go out now and then it seems to be ok.
I mean I'm still here.
But honestly I just think when your sick you need your mom. So I am always close by and tell him that. If I'm not in the room I'm never far away. Some how we have built a good balance with each other through this time in our lives, so I am not hovering over him and he can make decisions by himself and I'm so grateful he allows me to be a close part of it all.
As I'm writing this the IV machine is singing to us AGAIN, Zak reaches over and turns it off. He has learned how to handle some things by himself when the nurses aren't quick enough.
He's on his third blood transfusion today and their still pumping antibiotics in him to cover ANYTHING they can.. When your ANC (immune) is at 0 there is NO room for wondering and waiting, they pump him up the moment a fever starts for everything under the sun to cover every basis possible. Holy moly the kids is all antibiotics, saline and blood right now.
FOOD....."sounds good " , he says, but the thought of what it will do isn't something he trusts.... he just ate some for the first time in days.. he told me this.......
"It was great to eat but it didn't make me feel better".
This morning started the second day in ICU waiting for the rounds to see all the vitals, millions of tests , meds. etc..as I listen to the team of about 10 woman and men going over every detail, I am amazed at how they keep all the lingo in their heads. HOLY OVERLOAD!!!!!!!!!!!!! NO wonder it takes so many of them to keep it together.
When they ask me and Zak's dad, "do you have any questions" , I think, how in the world can we even think of a question when it takes 10 of you and there's only two of us , I need 20 more ears, brains and maybe some note pads.
Its feels like your being electrocuted with 10 years of medical schooling in 5 minutes (or how I imagine that to feel anyways).
After forgetting to eat yesterday and having a blood sugar drop issue I decided today, I'd do better, I ate a mozerella salad mmmm,,,, drank a shake and had some oatmeal ...not bad right... then I was walking by a snack machine and although I NEVER go there other than to stare at what I'd never eat .. I decided to buy POP CHIPS lol.. I put in a $5 bill and got back $3 ... this was about 5 chips mind you. It really cost $1.25 but doesn't tell you that the machine likes a tip. So a $2.00 lesson , I should of known.
SO for the end of my day I sit here quietly just listening to my boy talk every now and then, watch TV, laugh a little, text friends and be happy he just finished his last bag of blood for this trip.
The nurse just said ,"if you keep behaving you can get off the monitors tomorrow". He laughed and agree lol.. like I said anything for a smile.
I'm off to my lil apt . across town thank you to Rick's ( my children's DAD) sister Vera and her husband Marty, they have been wonderful and provided us with the downstairs to be close the hospital and have a place when Zak is ready for his journey to transplant. That actually starts next week so he wants to go back to his apt. for one last stay and then it'll be with me here in Seattle for the journey through transplant.
I'd rather he came with me now but I understand at 21 and his first apt. he wants to take in his moments before the long haul of being cared for 24/7. Now he knows the importance of temp taking and why. He has also learned MOTHER'S intuition is SPOT ON and DON'T mess with it! Thank you Jesus for the intuition you gave me with my kids. I could stand to have less sympathy pains for them but otherwise thank you so much!
too familiar with.
I left for a bit earlier today to walk my dogs(yes they are with me 2 of my 4 and they keep me sane, comfort me and love me and get me out for walks) and when I came back I asked Zak ,"you all done, ready for Disneyland?" He nodded "YES"
and smiled..
Awe that smile...
Anything for a smile.. I'd sing for him but I'm trying to be somewhat quiet so I am not crowding him. My children ALL came by that honestly," Don't crowd me"," don't stand over me". We all love our space and also love each other around , go figure.
What a fine line we walk with grown children, you can get kicked out, told to leave, your in the way, you bug me, stop talking, sit down, move, I can do it myself, I don't need help.. etc.. Zak has been super patient with me and I have learned if I'm somewhat quiet, don't get in his way and go out now and then it seems to be ok.
I mean I'm still here.
But honestly I just think when your sick you need your mom. So I am always close by and tell him that. If I'm not in the room I'm never far away. Some how we have built a good balance with each other through this time in our lives, so I am not hovering over him and he can make decisions by himself and I'm so grateful he allows me to be a close part of it all.
As I'm writing this the IV machine is singing to us AGAIN, Zak reaches over and turns it off. He has learned how to handle some things by himself when the nurses aren't quick enough.
He's on his third blood transfusion today and their still pumping antibiotics in him to cover ANYTHING they can.. When your ANC (immune) is at 0 there is NO room for wondering and waiting, they pump him up the moment a fever starts for everything under the sun to cover every basis possible. Holy moly the kids is all antibiotics, saline and blood right now.
FOOD....."sounds good " , he says, but the thought of what it will do isn't something he trusts.... he just ate some for the first time in days.. he told me this.......
"It was great to eat but it didn't make me feel better".
This morning started the second day in ICU waiting for the rounds to see all the vitals, millions of tests , meds. etc..as I listen to the team of about 10 woman and men going over every detail, I am amazed at how they keep all the lingo in their heads. HOLY OVERLOAD!!!!!!!!!!!!! NO wonder it takes so many of them to keep it together.
When they ask me and Zak's dad, "do you have any questions" , I think, how in the world can we even think of a question when it takes 10 of you and there's only two of us , I need 20 more ears, brains and maybe some note pads.
Its feels like your being electrocuted with 10 years of medical schooling in 5 minutes (or how I imagine that to feel anyways).
After forgetting to eat yesterday and having a blood sugar drop issue I decided today, I'd do better, I ate a mozerella salad mmmm,,,, drank a shake and had some oatmeal ...not bad right... then I was walking by a snack machine and although I NEVER go there other than to stare at what I'd never eat .. I decided to buy POP CHIPS lol.. I put in a $5 bill and got back $3 ... this was about 5 chips mind you. It really cost $1.25 but doesn't tell you that the machine likes a tip. So a $2.00 lesson , I should of known.
SO for the end of my day I sit here quietly just listening to my boy talk every now and then, watch TV, laugh a little, text friends and be happy he just finished his last bag of blood for this trip.
The nurse just said ,"if you keep behaving you can get off the monitors tomorrow". He laughed and agree lol.. like I said anything for a smile.
I'm off to my lil apt . across town thank you to Rick's ( my children's DAD) sister Vera and her husband Marty, they have been wonderful and provided us with the downstairs to be close the hospital and have a place when Zak is ready for his journey to transplant. That actually starts next week so he wants to go back to his apt. for one last stay and then it'll be with me here in Seattle for the journey through transplant.
I'd rather he came with me now but I understand at 21 and his first apt. he wants to take in his moments before the long haul of being cared for 24/7. Now he knows the importance of temp taking and why. He has also learned MOTHER'S intuition is SPOT ON and DON'T mess with it! Thank you Jesus for the intuition you gave me with my kids. I could stand to have less sympathy pains for them but otherwise thank you so much!
Thursday, November 7, 2013
Im going to try this by my phone, since I'm in ICU with Zak today.
The day started I waited till 11 am this morning to call Zak so he could sleep
without his phone going off with worry. He didnt answer
so I text him "R U OK?" He text me back, that I needed to call the nurse
for meds. I called the nurse .. left a message. I called the Hemo dept
Numerous times and no one could figure out where to send me.
I finally hung up in frustration called Zak back to hear his voice
and new immediately he needed to be in the hospital. I am in Seattle and his
dad was near Zaks apt so he ran and got him and I drove straight
here and made the ER aware he was on his way.
I waited with my prayers for him to arrive ,, he needed a wheelchair
to get in the hospital and looked white as a ghost, his fever
had sky rocketed to 104.5 ,,,, holy sh.... panic sets in its
the first time we have had complications like this and I can hardly breath.
What does this mean for Zak as I see 10-15 people on a team effort
trying to stabilize my boy( my heart). Heart rate fell,hes headed
into a sepsis journey.. med.s are stabalizing his heart, fluids are keeping him hydrated,
He has every tube it seems in the hospital attached to him, everyone is frantically working to
take care of every angle possible.
I haven't eaten all day and it wasn't until now I realized
I also left my morning tea in the microwave before I left.
I packed my food for the day quickly as I always do.. grabbed my shakes
and stress herbs and all my vitamins and water.
I walked out if the house without any of it. Its 7 pm and I'm getting
a headache and I need water . I feel like I can't move from this spot.
I'm watching his heart rate as if no one else is.. I know hes in the best hands
ever and he has a full-time nurse to himself here in ICU monitoring every detail.
My tongue is stuck to the roof of my mouth and my lips are
frozen shut, my teeth hurt from clenching I didn't realize
I was doing until now.
The nurse is standing in front of me watching zaks heart rate as the cuff
grabs him tight.. she finally says this is the first time I don't have to raise
the heart rate medication and Zak awakens and says" how long do I have
to be on the heart rate meds?"
He cant eat or drink a thing and is so thirsty.. he asked
for chapstick... that's my boy , anyone that knows us knows
we all have something for our lips in every pocket. Hes at least speaking now
that's good sign to me.
First visit to ICU yikes .... a baby in every room down every hall,
Its unreal the heart ache around here. Its a world I never realized
and never thought possible my child would be one of them.
Grown up with faith, health and fitness as his life ,what a fortunate foundation
he had for this time in his life.. I'm so glad I stuck to the healthy life
and raised them with knowledge of that.
The day started I waited till 11 am this morning to call Zak so he could sleep
without his phone going off with worry. He didnt answer
so I text him "R U OK?" He text me back, that I needed to call the nurse
for meds. I called the nurse .. left a message. I called the Hemo dept
Numerous times and no one could figure out where to send me.
I finally hung up in frustration called Zak back to hear his voice
and new immediately he needed to be in the hospital. I am in Seattle and his
dad was near Zaks apt so he ran and got him and I drove straight
here and made the ER aware he was on his way.
I waited with my prayers for him to arrive ,, he needed a wheelchair
to get in the hospital and looked white as a ghost, his fever
had sky rocketed to 104.5 ,,,, holy sh.... panic sets in its
the first time we have had complications like this and I can hardly breath.
What does this mean for Zak as I see 10-15 people on a team effort
trying to stabilize my boy( my heart). Heart rate fell,hes headed
into a sepsis journey.. med.s are stabalizing his heart, fluids are keeping him hydrated,
He has every tube it seems in the hospital attached to him, everyone is frantically working to
take care of every angle possible.
I haven't eaten all day and it wasn't until now I realized
I also left my morning tea in the microwave before I left.
I packed my food for the day quickly as I always do.. grabbed my shakes
and stress herbs and all my vitamins and water.
I walked out if the house without any of it. Its 7 pm and I'm getting
a headache and I need water . I feel like I can't move from this spot.
I'm watching his heart rate as if no one else is.. I know hes in the best hands
ever and he has a full-time nurse to himself here in ICU monitoring every detail.
My tongue is stuck to the roof of my mouth and my lips are
frozen shut, my teeth hurt from clenching I didn't realize
I was doing until now.
The nurse is standing in front of me watching zaks heart rate as the cuff
grabs him tight.. she finally says this is the first time I don't have to raise
the heart rate medication and Zak awakens and says" how long do I have
to be on the heart rate meds?"
He cant eat or drink a thing and is so thirsty.. he asked
for chapstick... that's my boy , anyone that knows us knows
we all have something for our lips in every pocket. Hes at least speaking now
that's good sign to me.
First visit to ICU yikes .... a baby in every room down every hall,
Its unreal the heart ache around here. Its a world I never realized
and never thought possible my child would be one of them.
Grown up with faith, health and fitness as his life ,what a fortunate foundation
he had for this time in his life.. I'm so glad I stuck to the healthy life
and raised them with knowledge of that.
Wednesday, November 6, 2013
Are you kidding me?
What do you mean you have been yelling out to his bedroom window for 30 min and he isn't responding?
What do you mean he knew you were coming and now he's not responding... "Tear down the F....ing door down then and get your a... in there. " I said to his friend that called me, asking if I had heard from Zak. He wasn't responding to phone calls or yelling at his bedroom window that was open and he knew he was coming over.
I called as well, NO answer...pretty sure I need a new heart at this point.
Zak wanted to go back to his apartment to sleep after being hydrated and given IV meds . What I didn't know when his dad dropped him off was, that his friend that lives next door didn't have the key and couldn't get in . Zak fell SOUND asleep and no one had a key.
My conversation to myself about Zak.....Ok no more being alone that's enough of that. The time is now that you accept you need someone near you . Too many things can go wrong and you needs to get to the hospital ASAP and I honestly cant take the worry that you need something and are too sick to ask for it.
Since Zak just turned 21 he gets to decide when he needs me or anyone else.. Talk about learning to let go and pray your child will make the right decisions in the hardest, most vulnerable time in his life.
I have moved to Seattle temporarily to be ready for the day Zak needs to be no more than 20 minutes away. Basically I'm ready because I know Zak will take it to the last minute and then collapse. Hence, the exact way he ended up in the hospital in the first place (passed out with 95% leukemia in his body and needing 6 blood transfusions).
Were coming up on that day , the bone marrow transplant day.. The day he has a new birthday assigned.. the crazy day his body is at 0 immune and will be transplanted within new stem cells and then we begin to build him back to the man he wants to be. His words are," there will NEVER be bad food around me after this, I will be eating immaculate and there will never be junk in my house. I never had junk in there before and there won't be any after this either."
NEXT DAY.............................. Wednesday.....Today..... another day in the IV rooms getting fluid and medications. While I sit next to my son I can hear, nurses, phones, pumps going off at every corner, curtains opening and closing and scanners scanning every bar code over and over to match meds with patience. I can hear babies crying, little kids saying "no pokes today". I see kids with ports in their heads, throwing up in waiting areas, sleeping in strollers and parents getting used to the drill of making Seattle Children's hospital a home.
My son is sitting next to me with his hood over his head and covering his eyes, his eyes hurt, his body hurts, he cant eat, drink or barely move, he's hot , then he's cold. Today randomly he said what sounded good was the cracker and cheese paks in the store. I would of got him anything, however what sounds good and what he can eat don't at all match up. I asked if he wanted it and he said , "NO".
I grab ice cups, fruit cups and juice, coke, sprite, anything that will help along the way. He's never been a pop drinker and refused to drink it in the beginning, somehow its all he can do some days now.
What do you mean you have been yelling out to his bedroom window for 30 min and he isn't responding?
What do you mean he knew you were coming and now he's not responding... "Tear down the F....ing door down then and get your a... in there. " I said to his friend that called me, asking if I had heard from Zak. He wasn't responding to phone calls or yelling at his bedroom window that was open and he knew he was coming over.
I called as well, NO answer...pretty sure I need a new heart at this point.
Zak wanted to go back to his apartment to sleep after being hydrated and given IV meds . What I didn't know when his dad dropped him off was, that his friend that lives next door didn't have the key and couldn't get in . Zak fell SOUND asleep and no one had a key.
My conversation to myself about Zak.....Ok no more being alone that's enough of that. The time is now that you accept you need someone near you . Too many things can go wrong and you needs to get to the hospital ASAP and I honestly cant take the worry that you need something and are too sick to ask for it.
Since Zak just turned 21 he gets to decide when he needs me or anyone else.. Talk about learning to let go and pray your child will make the right decisions in the hardest, most vulnerable time in his life.
I have moved to Seattle temporarily to be ready for the day Zak needs to be no more than 20 minutes away. Basically I'm ready because I know Zak will take it to the last minute and then collapse. Hence, the exact way he ended up in the hospital in the first place (passed out with 95% leukemia in his body and needing 6 blood transfusions).
Were coming up on that day , the bone marrow transplant day.. The day he has a new birthday assigned.. the crazy day his body is at 0 immune and will be transplanted within new stem cells and then we begin to build him back to the man he wants to be. His words are," there will NEVER be bad food around me after this, I will be eating immaculate and there will never be junk in my house. I never had junk in there before and there won't be any after this either."
NEXT DAY.............................. Wednesday.....Today..... another day in the IV rooms getting fluid and medications. While I sit next to my son I can hear, nurses, phones, pumps going off at every corner, curtains opening and closing and scanners scanning every bar code over and over to match meds with patience. I can hear babies crying, little kids saying "no pokes today". I see kids with ports in their heads, throwing up in waiting areas, sleeping in strollers and parents getting used to the drill of making Seattle Children's hospital a home.
My son is sitting next to me with his hood over his head and covering his eyes, his eyes hurt, his body hurts, he cant eat, drink or barely move, he's hot , then he's cold. Today randomly he said what sounded good was the cracker and cheese paks in the store. I would of got him anything, however what sounds good and what he can eat don't at all match up. I asked if he wanted it and he said , "NO".
I grab ice cups, fruit cups and juice, coke, sprite, anything that will help along the way. He's never been a pop drinker and refused to drink it in the beginning, somehow its all he can do some days now.
Monday, November 4, 2013
What do you do with feelings you have never experienced?
A good feeling?
A bad feeling?
A heavy feeling?
Uncontrolled feeling that overcomes you?
Pain in your chest that never ceases?
Anxiety, hyperventilating ?
Skin that scratches so bad from the nerve pain you scratch till you bleed?
Drink when you never where a drinker?
Walk until your hips give out?
Try things you never tried before for anxiety?
Or do you take it head on and conquer it with Warrior strength?
Wait .... is Warrior strength getting to the other side or is it getting to the other side the best way you know how?
I have spent much of my life teaching health and fitness, eating perfectly for most of my life with some bad years thrown in. In the grand skeem of things I did well, mostly over did it . I'd say obsessive some years in conquering pain, fear and life's harships with exercise and health, getting more on track not getting off track.
However I question what is off track and what is on track now.
When you watch your child get sicker and sicker and the pain is so intense and you can't take it away, what do you do?
How do you cope with the day , the hour, the minute, the second?
Oh ya with warrior strength.....
Why does my warrior strength feel so different now than it always did before?
I feel like I'm losing some of my emotions, until I move, talk, walk, listen and then the tears are ready to flow. YES at means at every moment of the day , night and morning, I want to cry but it doesn't help me. It seems so ridiculous to cry when my son is having more pain than I can comprehend and we get billed for this torture. I'm taking my child to appts. , hospital stays and watching him fight for his life. I want to give him my life and take all his pain......
Today Zak asked me "MOM, HOW ARE YOU FEELING?" I tried to keep it together while I answered.. "ME? how am I?" How can he even think about me?
I answered like this.....
"I feel like my mind and body are not in sync , like I live in someone else's body and this is not my own anymore. I have no connection to my body anymore. I have never experienced anything in my life more painful than watching you go through this."
We talked back and forth about each others feelings and shared some light jokes. I made sure he knows I want to talk to him about feelings and no one else. I need him to communicate with me when he needs something or wants something. I will move mountains for this boy. He was honest with me about many things , some things were hard to hear but nothing was as hard to hear as just knowing the reality of the journey is going to get worse than today and neither of us have ANY IDEA HOW TO GET READY!
What I know is I WILL GET THROUGH THIS WITH HIM AND I WILL GET HIM SO STRONG AFTER HE WILL BE AMAZING and enjoying his life again SOOOOOOON... I will tattoo "A Mother of a Warrior " and we will look back and be able to say , WE MADE IT! I'm not sure what I'll remember but I'll forever have a new pain I hope never becomes familiar.
A good feeling?
A bad feeling?
A heavy feeling?
Uncontrolled feeling that overcomes you?
Pain in your chest that never ceases?
Anxiety, hyperventilating ?
Skin that scratches so bad from the nerve pain you scratch till you bleed?
Drink when you never where a drinker?
Walk until your hips give out?
Try things you never tried before for anxiety?
Or do you take it head on and conquer it with Warrior strength?
Wait .... is Warrior strength getting to the other side or is it getting to the other side the best way you know how?
I have spent much of my life teaching health and fitness, eating perfectly for most of my life with some bad years thrown in. In the grand skeem of things I did well, mostly over did it . I'd say obsessive some years in conquering pain, fear and life's harships with exercise and health, getting more on track not getting off track.
However I question what is off track and what is on track now.
When you watch your child get sicker and sicker and the pain is so intense and you can't take it away, what do you do?
How do you cope with the day , the hour, the minute, the second?
Oh ya with warrior strength.....
Why does my warrior strength feel so different now than it always did before?
I feel like I'm losing some of my emotions, until I move, talk, walk, listen and then the tears are ready to flow. YES at means at every moment of the day , night and morning, I want to cry but it doesn't help me. It seems so ridiculous to cry when my son is having more pain than I can comprehend and we get billed for this torture. I'm taking my child to appts. , hospital stays and watching him fight for his life. I want to give him my life and take all his pain......
Today Zak asked me "MOM, HOW ARE YOU FEELING?" I tried to keep it together while I answered.. "ME? how am I?" How can he even think about me?
I answered like this.....
"I feel like my mind and body are not in sync , like I live in someone else's body and this is not my own anymore. I have no connection to my body anymore. I have never experienced anything in my life more painful than watching you go through this."
We talked back and forth about each others feelings and shared some light jokes. I made sure he knows I want to talk to him about feelings and no one else. I need him to communicate with me when he needs something or wants something. I will move mountains for this boy. He was honest with me about many things , some things were hard to hear but nothing was as hard to hear as just knowing the reality of the journey is going to get worse than today and neither of us have ANY IDEA HOW TO GET READY!
What I know is I WILL GET THROUGH THIS WITH HIM AND I WILL GET HIM SO STRONG AFTER HE WILL BE AMAZING and enjoying his life again SOOOOOOON... I will tattoo "A Mother of a Warrior " and we will look back and be able to say , WE MADE IT! I'm not sure what I'll remember but I'll forever have a new pain I hope never becomes familiar.
Sunday, November 3, 2013
So here I am again,,
The second post... I'm moving right along with this new venture.
I'm adding a link to my sons fundraiser sight where my daughter writes weekly updates,, there you can see the journey through her eyes and get a catch up on the first two months. She has added quite a few details of Zak's cancer after reading much of the paperwork I carry around and have a hard time reading.
https://fundrazr.com/stories/75JHJd?psid=b00f326650c94b92b6bb87d0e7cc509e&fb_ref=share__61pTN2
Today is the morning after this last round of intense Chemo. , this one was three days long, however his system has to flush before he goes home. I came into Zak's room at the hospital with my head up high this morning. I took a walk around Seattle's Greenlake last night, ate a good dinner and slept ok , so I was ready for the day.
I walked into Zaks room and seeing him get sicker and sicker is something I am just NEVER ready for at all.
I just said to him,"this round is making you feel sicker isn't it?"
He knotted his head YES
Immediately my breakfast has become a brick of regret and I need to rethink eating before I get here now.
I picked up some of the dishes and drinks around from the night before and gladly went downstairs to purchase him two water bottles he actually wanted. Anything he wants I am more than happy to go get, I think it harder when he wants nothing. I just want him to be better right now.
Its only a couple weeks now from the preparations for the bone marrow transplant. Cheyenne (Zak's little sister) and I will be headed to Seattle's Cancer Care Alliance soon for the start to the regimen and physicals they both have to have to move forward with the transplant.
As I'm writing this the sun is shining in the window and its beautiful outside. My daughter Brandee, (the oldest) is coming in with my grandson to visit and say hi. As long as no one is sick anyone can visit right now.
For some reason I'm super tired all the sudden, my emotions get so high then drop and knock me out, there's no balance to a contant rush of adrenaline. Up then down, up then down, my body is getting heavy from the cortisol I'm not able to get control of yet.
My life as I knew it has changed and finding the new balance would of have been easier had I not lost my mind the first 30 days. I didn't follow any regimen at all of my normal life and days, not with food, exercise, friends or family. I lost myself in the journey ,fears, struggles and appointments. I took a big mudslide to a unknown place and then felt myself drowing. So I started to make a plan and get a routine I could manage.
Today turned out to be an amazing day at about 3 pm my oldest daughter and my grandson showed up and we walked around the town, had lunch, talked, shared, and went to visit Zak together.. She saw first hand the difficulty I have.. she sent me a text while I was running my grandson through the hospital and said" MOM I don't know how you do this".. Zak was sick and she happened to be in the room when he didn't feel good.
I left my phone charger at the hospital so have no phone and no one can call me in emergency. It also is my charger for my hotspot and I wont have internet either... The first time no one can contact me.. Ill pray all is well, Zak is at the hospital and siblings are on call.. Thank you JESUS for giving me 4 children..
I have so much to say and I'll still be figuring out when to sit still and write like I need to.. for now its when I can grab my computer and sit still, and think , which isn't often all at the same time.. Ill figure out and you'll get to take the journey with me ... I hope I can help someone else along the way,,
The second post... I'm moving right along with this new venture.
I'm adding a link to my sons fundraiser sight where my daughter writes weekly updates,, there you can see the journey through her eyes and get a catch up on the first two months. She has added quite a few details of Zak's cancer after reading much of the paperwork I carry around and have a hard time reading.
https://fundrazr.com/stories/75JHJd?psid=b00f326650c94b92b6bb87d0e7cc509e&fb_ref=share__61pTN2
Today is the morning after this last round of intense Chemo. , this one was three days long, however his system has to flush before he goes home. I came into Zak's room at the hospital with my head up high this morning. I took a walk around Seattle's Greenlake last night, ate a good dinner and slept ok , so I was ready for the day.
I walked into Zaks room and seeing him get sicker and sicker is something I am just NEVER ready for at all.
I just said to him,"this round is making you feel sicker isn't it?"
He knotted his head YES
Immediately my breakfast has become a brick of regret and I need to rethink eating before I get here now.
I picked up some of the dishes and drinks around from the night before and gladly went downstairs to purchase him two water bottles he actually wanted. Anything he wants I am more than happy to go get, I think it harder when he wants nothing. I just want him to be better right now.
Its only a couple weeks now from the preparations for the bone marrow transplant. Cheyenne (Zak's little sister) and I will be headed to Seattle's Cancer Care Alliance soon for the start to the regimen and physicals they both have to have to move forward with the transplant.
As I'm writing this the sun is shining in the window and its beautiful outside. My daughter Brandee, (the oldest) is coming in with my grandson to visit and say hi. As long as no one is sick anyone can visit right now.
For some reason I'm super tired all the sudden, my emotions get so high then drop and knock me out, there's no balance to a contant rush of adrenaline. Up then down, up then down, my body is getting heavy from the cortisol I'm not able to get control of yet.
My life as I knew it has changed and finding the new balance would of have been easier had I not lost my mind the first 30 days. I didn't follow any regimen at all of my normal life and days, not with food, exercise, friends or family. I lost myself in the journey ,fears, struggles and appointments. I took a big mudslide to a unknown place and then felt myself drowing. So I started to make a plan and get a routine I could manage.
Today turned out to be an amazing day at about 3 pm my oldest daughter and my grandson showed up and we walked around the town, had lunch, talked, shared, and went to visit Zak together.. She saw first hand the difficulty I have.. she sent me a text while I was running my grandson through the hospital and said" MOM I don't know how you do this".. Zak was sick and she happened to be in the room when he didn't feel good.
I left my phone charger at the hospital so have no phone and no one can call me in emergency. It also is my charger for my hotspot and I wont have internet either... The first time no one can contact me.. Ill pray all is well, Zak is at the hospital and siblings are on call.. Thank you JESUS for giving me 4 children..
I have so much to say and I'll still be figuring out when to sit still and write like I need to.. for now its when I can grab my computer and sit still, and think , which isn't often all at the same time.. Ill figure out and you'll get to take the journey with me ... I hope I can help someone else along the way,,
Saturday, November 2, 2013
Acute Lymphoblastic Leukemia with a IAMP21 chromosome
What in the world is that? First I need to learn how to blog then I can define the situation, feelings and routine.
Today I'm about 2 months behind on information about my story . I needed to find a place I can be creative, talk to others and teach others things I am learning along the way.
My son of 21 , just turned 21 on Halloween found out 2 months ago as a healthy young man just getting his independence and figuring out what he wanted to be when he grew up, that his independence was going to be put on hold while he fights for his life.
His sister updates everyone which I will add to this blog , because her writing is impeccable and she spells out things I haven't had time to even comprehend much less accepted. For me the story is quite different and I'd like to share with you what I see and feel and learn along this journey. In hopes I can help someone else and maybe someone else can reach out to me from theirs experience as well. Possibly we can build a world of support for many.
So for today I'll just tell you I'm a mother of 4 a grandmother of almost 3 now and on a journey I never could of imagined would happen in my family, much less my son Zak, the kid who never even had a cavity, a cold.
I wish I could remember the day it started, you'd think that first day would be ingrained , however its a blurr I barely remember already and its been only two months. One day he was at work and working out and had his first apt. he just moved into. Then one night at work he hit the floor , passed out and ended up in the ER getting 6 bags of blood transfusion.
I had called him the night before and no answer, I text him and no answer, his youngest sister had been trying to get him as well and it just didn't seem like him to not answer. So since it was a Friday I let it go as he may be out with friends and I'd call in the a.m. again.
I text and said,"are you ok", not expecting what I got.. he replied " I am now".. WHAT THE HELL !!!!!!!!!!!!!!!!!!!!!! I dialed him as fast as I could and he said "I passed out at work , I'm good now,they gave me blood transfusions and don't worry I'll be going home soon. I said, "ughhgh I'll be right there."
He just kept saying he would be out and don't come and don't worry.. I said ok I'll wait an hour if your still there I'm headed there no matter what you say.
I barely waited and headed straight to the hospital an hour away.. He was getting blood tests done and it came back Acute lymphblastic Leukemia. WHAT???????????????? I couldn't even take that in, I don't think it even hit me till later,, I went numb first, immediate denial was my arena I jumped into. I didn't get long to hang out there as he was transferred to Children's hospital ASAP.. It has been a whirlwind ever since.. Days are running into each other, feelings overlap, fundraisers are in motion, friends are calling, facebook posts are all out for support and the story of MY WARRIOR SON.
Zak hit the floor with 10% of his blood and 95% of it was leukemia. There not sure how he even survived with that little of blood in his system. Signs? yes there was , did we ever think it would be this or something bad , NOT in a million years. He knew to eat better, don't drink, workout, work hard, stay on track and keep moving. That's the kind of mother he was raised by, it was a part of who he is , to stand up, try again and always put health and wellness first.. HE DID and Thank GOD he did because the foundation I built for him as a child had been held up by him and has saved his life . His body fights for him, is taking care of him, his reserves are amazing and he has done well.
This is the round where the HARD part is hitting.. the mac truck so they say. Before I tell you too much more Ill post the updates my daughter wrote to give you some insight on our situation.
For today in the library at Children's hospital in Seattle I'll just get this started and change and learn along the way.
Today I'm about 2 months behind on information about my story . I needed to find a place I can be creative, talk to others and teach others things I am learning along the way.
My son of 21 , just turned 21 on Halloween found out 2 months ago as a healthy young man just getting his independence and figuring out what he wanted to be when he grew up, that his independence was going to be put on hold while he fights for his life.
His sister updates everyone which I will add to this blog , because her writing is impeccable and she spells out things I haven't had time to even comprehend much less accepted. For me the story is quite different and I'd like to share with you what I see and feel and learn along this journey. In hopes I can help someone else and maybe someone else can reach out to me from theirs experience as well. Possibly we can build a world of support for many.
So for today I'll just tell you I'm a mother of 4 a grandmother of almost 3 now and on a journey I never could of imagined would happen in my family, much less my son Zak, the kid who never even had a cavity, a cold.
I wish I could remember the day it started, you'd think that first day would be ingrained , however its a blurr I barely remember already and its been only two months. One day he was at work and working out and had his first apt. he just moved into. Then one night at work he hit the floor , passed out and ended up in the ER getting 6 bags of blood transfusion.
I had called him the night before and no answer, I text him and no answer, his youngest sister had been trying to get him as well and it just didn't seem like him to not answer. So since it was a Friday I let it go as he may be out with friends and I'd call in the a.m. again.
I text and said,"are you ok", not expecting what I got.. he replied " I am now".. WHAT THE HELL !!!!!!!!!!!!!!!!!!!!!! I dialed him as fast as I could and he said "I passed out at work , I'm good now,they gave me blood transfusions and don't worry I'll be going home soon. I said, "ughhgh I'll be right there."
He just kept saying he would be out and don't come and don't worry.. I said ok I'll wait an hour if your still there I'm headed there no matter what you say.
I barely waited and headed straight to the hospital an hour away.. He was getting blood tests done and it came back Acute lymphblastic Leukemia. WHAT???????????????? I couldn't even take that in, I don't think it even hit me till later,, I went numb first, immediate denial was my arena I jumped into. I didn't get long to hang out there as he was transferred to Children's hospital ASAP.. It has been a whirlwind ever since.. Days are running into each other, feelings overlap, fundraisers are in motion, friends are calling, facebook posts are all out for support and the story of MY WARRIOR SON.
Zak hit the floor with 10% of his blood and 95% of it was leukemia. There not sure how he even survived with that little of blood in his system. Signs? yes there was , did we ever think it would be this or something bad , NOT in a million years. He knew to eat better, don't drink, workout, work hard, stay on track and keep moving. That's the kind of mother he was raised by, it was a part of who he is , to stand up, try again and always put health and wellness first.. HE DID and Thank GOD he did because the foundation I built for him as a child had been held up by him and has saved his life . His body fights for him, is taking care of him, his reserves are amazing and he has done well.
This is the round where the HARD part is hitting.. the mac truck so they say. Before I tell you too much more Ill post the updates my daughter wrote to give you some insight on our situation.
For today in the library at Children's hospital in Seattle I'll just get this started and change and learn along the way.
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