Last night and today have been pure joy...sweet joy!
Camryn slept like a rock last night, hardly moved at all...she truly enjoyed being in her bed, in her room, sleeping on her pillows. Yes, what a difference home makes. Unfortunately we had to wake Camryn up really early today to head to clinic. One of the stipulations of our discharge was that we would be at clinic today...yes, we were discharged at 3:00pm yesterday and at clinic at 8:00am. But, this is what we do...follow our instructions. Camryn was super grouchy about having to get up, she was having none of going to clinic...I felt horrible for her. We just got home and now we are heading back again. We tried to reassure her that it would be a quick trip, that we'd be coming home...but you know I'm not sure she believes it.
We got to clinic and found our usual spot in the procedure area...everyone was happy to see Camryn back. Curtain #8 has it's occupant back. We waited for some paperwork and Camryn got settled in her recliner...and before too long she was asleep. It will take awhile for Camryn to adjust to real schedules...you know what I'm talking about if you've ever spent time in the hospital. Lots happens at night, so it's late nights and late mornings.
As Camryn slept Nurse Charlotte drew her labs and we just hung out and waited...chatted with Kristen for awhile which is always a treat. We LOVE Kristen! In a few minutes Dr.A came over and saw Camryn...she was still sleeping, and true to Dr.A form he didn't wake her. Reminded us about rashes, fevers, really anything...give them a call. The biggest thing right now is Camryn drinking...she has to up her fluid intake as the kidneys take quite a hit during chemo and radiation. So we are watching her fluids and encouraging her to drink and drink lots!
Labs looked great and we were on our way home...
The rest of the day was spent just hanging out. Honestly both me and Jason feel like we got hit by a truck...we are so exhausted. Really trying to catch up, thankfully we don't have anywhere to be or anywhere to go these days so lounging at home is it. Wyatt and Camryn enjoyed the day playing together and doing all sorts of things. I must admit that I just stood outside Wy's room for a bit listening to them chat...oh the joy! Savoring the sweetness of the moment...
We are thankful...extremely thankful! We know that Camryn has done so well and we also know that we have a long way to go. We are not out of the woods yet, by a long shot; but we are thankful for this day.
Living life in the hospital makes you realize how much of life we take for granted...and so we thank the Lord for giving us today. We are thankful for what He has done in Camryn's life...how she has fought thus far and praying that He will continue to give her the strength and protection to keep fighting, keep living.
Tuesday, June 30, 2009
Monday, June 29, 2009
happiest homecoming of all...day +25
Camryn is home...happy homecoming baby girl. To say that we have savored the sound of her voice and the life she brings to our home is an understatement. Right now her and Wyatt are enjoying a picnic of goldfishes and juice boxes and absolutely enjoying each other's company. I honestly think they just want to stay up all night in hopes that this is not a dream...that Camryn is home and home for good.
Today started with me heading down super early to start packing up Camryn's room, it's amazing what we had amassed. So, Wyatt went to Grandma Mikels and I headed out...got to UCLA and got the report that yes in fact today is the day! Dr.M and Dr.W came by and chatted with Jason about what was to come...how Cam's counts looked today and just info. I got to UCLA and I'll admit I wasn't too sure Cam was okay...she looked so sad. I think she was a little worried that maybe she would not go home...don't think she could truly be excited until she was actually walking out the door. We got started on taking her meds and I am pleased to report Camryn is doing MUCH better. She is keeping her meds down and fighting them much less, so thankful! As we waited for discharge papers and prescriptions we packed up stuff and just got things ready. My parents came down to give us an extra car as it took two cars to get Camryn home after her first transplant...so no doubt two cars were needed this time. As my parents hung out with Camryn we made trips to the car...felt surreal to be taking Cam's things to the car. Kept thinking to myself, this is really happening.
We continued to wait and wait for all the paper work...there was some confusion about Camryn's Lovenox shots and home health care, but thankful at 3:00 it was all settled and we had the okay to go home. I signed the papers and we were on our way! Camryn said good-bye to her nurses...she is really going to miss them. She commented today, "Mom, what am I going to do without my nurses? I will miss them." And she will...for 5 weeks they were her friends, making her smile, laugh, enjoy life. I assured her we'd come to visit...can't spend 5 weeks with a team of people and not feel connected. Thankful for the care Camryn received, it was the best.
As we walked out...Camryn got a perk in her step...this was happening, she was going home!
We got to the car and she just smiled and smiled...couldn't get enough of the fact that she was going home. On the way home she fell asleep...and about 1 minute before we were home I woke her up and when we pulled in the driveway she was out of the car so fast...HOME!
Our dear friend Kelly brought some balloons over to celebrate, thanks Kel. Camryn loved them and can't wait to see you!
Grandma Mikels and Papa & Grandma Wilson were here to welcome Camryn home...they all had the biggest smiles, just so excited to see their girl home. And of course Wyatt was waiting...
He was SO excited, in fact tonight he hasn't let her out of his sight...following her from room to room. Playing whatever he can with her...being her best friend. Oh they have had a blast tonight. Camryn's room is thrashed...as it should be. Wyatt is about ready to crash, but is going strong because he's with Camryn.
Jason and I are loving the relaxation of home...just being here brings such relief and comfort. Hopeful for a very restful days...just to catch up.
Here are a few pictures...hope you enjoy.
Today is Day +25...would you believe we came home from Camryn's first transplant at Day +28. Amazing! Camryn is a fighter, the spunk to keep going and to fight whatever comes her way.
Camryn Lee...
You are our hero and we love you so!
Love,
Daddy, Mommy and Wyatt
Today started with me heading down super early to start packing up Camryn's room, it's amazing what we had amassed. So, Wyatt went to Grandma Mikels and I headed out...got to UCLA and got the report that yes in fact today is the day! Dr.M and Dr.W came by and chatted with Jason about what was to come...how Cam's counts looked today and just info. I got to UCLA and I'll admit I wasn't too sure Cam was okay...she looked so sad. I think she was a little worried that maybe she would not go home...don't think she could truly be excited until she was actually walking out the door. We got started on taking her meds and I am pleased to report Camryn is doing MUCH better. She is keeping her meds down and fighting them much less, so thankful! As we waited for discharge papers and prescriptions we packed up stuff and just got things ready. My parents came down to give us an extra car as it took two cars to get Camryn home after her first transplant...so no doubt two cars were needed this time. As my parents hung out with Camryn we made trips to the car...felt surreal to be taking Cam's things to the car. Kept thinking to myself, this is really happening.
We continued to wait and wait for all the paper work...there was some confusion about Camryn's Lovenox shots and home health care, but thankful at 3:00 it was all settled and we had the okay to go home. I signed the papers and we were on our way! Camryn said good-bye to her nurses...she is really going to miss them. She commented today, "Mom, what am I going to do without my nurses? I will miss them." And she will...for 5 weeks they were her friends, making her smile, laugh, enjoy life. I assured her we'd come to visit...can't spend 5 weeks with a team of people and not feel connected. Thankful for the care Camryn received, it was the best.
As we walked out...Camryn got a perk in her step...this was happening, she was going home!
We got to the car and she just smiled and smiled...couldn't get enough of the fact that she was going home. On the way home she fell asleep...and about 1 minute before we were home I woke her up and when we pulled in the driveway she was out of the car so fast...HOME!
Our dear friend Kelly brought some balloons over to celebrate, thanks Kel. Camryn loved them and can't wait to see you!
Grandma Mikels and Papa & Grandma Wilson were here to welcome Camryn home...they all had the biggest smiles, just so excited to see their girl home. And of course Wyatt was waiting...
He was SO excited, in fact tonight he hasn't let her out of his sight...following her from room to room. Playing whatever he can with her...being her best friend. Oh they have had a blast tonight. Camryn's room is thrashed...as it should be. Wyatt is about ready to crash, but is going strong because he's with Camryn.
Jason and I are loving the relaxation of home...just being here brings such relief and comfort. Hopeful for a very restful days...just to catch up.
Here are a few pictures...hope you enjoy.
Today is Day +25...would you believe we came home from Camryn's first transplant at Day +28. Amazing! Camryn is a fighter, the spunk to keep going and to fight whatever comes her way.
Camryn Lee...
You are our hero and we love you so!
Love,
Daddy, Mommy and Wyatt
Sunday, June 28, 2009
day +24...believe it
This was going to be a big day...oral meds...but after the great night's sleep Camryn got I felt confident we'd be okay. Camryn slept through the entire night...not once did she get up to go to the bathroom. Oh my goodness, she just slept so soundly and peacefully...unlike me. I heard every noise and movement anticipating Camryn having to go to the bathroom...but, I am thankful she slept so well, what a blessing.
We started the morning well...got some breakfast. Camryn didn't feel much like eating, but we chatted and worked and finally got a bowl of cereal eaten. Then Nurse Bridget brought in the first round of oral meds...oh Camryn was having none of that. But we had to get them done...it's really the worst to have to force your child to do something they HATE doing.
Dr. M and Dr. P came in to talk to Camryn...Dr. M walks in and says, "Is beautiful Camryn here?" To which Camryn said "YES and I'm free." A few minutes earlier she was hep locked off her IV pole. No more pole...it was fantastic. Cam was jumping, walking, moving all around her room...freedom. Dr. M chatted with Camryn and then with me...He said we are on target to go home tomorrow! We will then follow up in clinic on Tuesday just to touch base to make sure all is well. We talked through some GVH issues and things and it was just wonderful to hear and see the confidence that Dr. M has in Camryn's progress...to see him just smile when talking about how well she is doing was just awesome!! Truly, my heart just found peace...Camryn is doing well. We have a long road ahead...but it is a road as an out-patient.
After Dr. M talked with Camryn and assured her home was coming...I got Camryn to finally take her cyclosporin and she was so worked up and really crazy that she threw it all back up. Great...not such a good start. We called Nurse Bridget ordered more meds to try again. In the in between time while waiting for the meds to come from pharmacy Camryn and I took a walk...yes we finally got to leave her room. It was darling...I took pictures, but left the camera with Jason so he could get pictures of Cam with her favorite nurses, so I'll post them later. Camryn and I walked to the nurse's station, chatted with all the nurses and Dr. M came out of another room and asked her if she was going to go outside and see the blue sky...and Camryn was thrilled. We walked out the locked hallway door...to the elevators...down to the first floor and looked around and then outside. Oh Camryn was darling totally oblivious to the stares of the other people at the little bald girl with a mask on...she was living life to the fullest.
We came back upstairs and Wyatt and Daddy got there...Camryn was so excited to see them...we then tried the meds again. Yep, threw up everywhere...sigh...this was going to take awhile. Thankfully Nurse Bridget was way great about everything and helped us out so much...it was wonderful.
Finally after eating some lunch and just getting her mind on something else we got her meds down...and they stayed down! So that was a major hurdle crossed...now we have to do meds a lot and there will be lots of fights I'm sure as Camryn wants nothing to do with meds...but, I know we are doing the right thing...it's just hard. But, you know the maker of meds really needs to figure out ways to make them taste better. Honestly some of the stuff Camryn has to get down is awful, just awful. But Jason and I are so proud of her today...she's done her best and that's all we can ask.
I left later this afternoon to meet up with my sister, my niece and mom to deep clean Camryn's room...the rest of our house is very clean, but Camryn's room as sat for five weeks so we cleaned and cleaned. Oh how wonderful it looks now...simply wonderful! After we got Cam's room cleaned I headed out to get groceries and a few other things, it was a long day, but thankfully we are ready for Camryn to come home.
Tonight is hopefully our last night apart and I can hardly believe it. I can hardly believe tomorrow I will drive down to UCLA alone and come home with Jay & Cam...my eyes tear up just thinking about it. We've missed our girl at home...we've missed the sound of Camryn throughout the rooms...and she's coming home...
Tomorrow is Camryn's homecoming...Praising the Lord for making it all possible. Praising Him for walking with Camryn through some hard days, some scary moments, and holding her, protecting her and loving her.
And you know who is probably the most excited??? Wyatt. He is so thrilled that his best friend is coming home tomorrow...oh the joy!
Believe it...Camryn is coming home!
We started the morning well...got some breakfast. Camryn didn't feel much like eating, but we chatted and worked and finally got a bowl of cereal eaten. Then Nurse Bridget brought in the first round of oral meds...oh Camryn was having none of that. But we had to get them done...it's really the worst to have to force your child to do something they HATE doing.
Dr. M and Dr. P came in to talk to Camryn...Dr. M walks in and says, "Is beautiful Camryn here?" To which Camryn said "YES and I'm free." A few minutes earlier she was hep locked off her IV pole. No more pole...it was fantastic. Cam was jumping, walking, moving all around her room...freedom. Dr. M chatted with Camryn and then with me...He said we are on target to go home tomorrow! We will then follow up in clinic on Tuesday just to touch base to make sure all is well. We talked through some GVH issues and things and it was just wonderful to hear and see the confidence that Dr. M has in Camryn's progress...to see him just smile when talking about how well she is doing was just awesome!! Truly, my heart just found peace...Camryn is doing well. We have a long road ahead...but it is a road as an out-patient.
After Dr. M talked with Camryn and assured her home was coming...I got Camryn to finally take her cyclosporin and she was so worked up and really crazy that she threw it all back up. Great...not such a good start. We called Nurse Bridget ordered more meds to try again. In the in between time while waiting for the meds to come from pharmacy Camryn and I took a walk...yes we finally got to leave her room. It was darling...I took pictures, but left the camera with Jason so he could get pictures of Cam with her favorite nurses, so I'll post them later. Camryn and I walked to the nurse's station, chatted with all the nurses and Dr. M came out of another room and asked her if she was going to go outside and see the blue sky...and Camryn was thrilled. We walked out the locked hallway door...to the elevators...down to the first floor and looked around and then outside. Oh Camryn was darling totally oblivious to the stares of the other people at the little bald girl with a mask on...she was living life to the fullest.
We came back upstairs and Wyatt and Daddy got there...Camryn was so excited to see them...we then tried the meds again. Yep, threw up everywhere...sigh...this was going to take awhile. Thankfully Nurse Bridget was way great about everything and helped us out so much...it was wonderful.
Finally after eating some lunch and just getting her mind on something else we got her meds down...and they stayed down! So that was a major hurdle crossed...now we have to do meds a lot and there will be lots of fights I'm sure as Camryn wants nothing to do with meds...but, I know we are doing the right thing...it's just hard. But, you know the maker of meds really needs to figure out ways to make them taste better. Honestly some of the stuff Camryn has to get down is awful, just awful. But Jason and I are so proud of her today...she's done her best and that's all we can ask.
I left later this afternoon to meet up with my sister, my niece and mom to deep clean Camryn's room...the rest of our house is very clean, but Camryn's room as sat for five weeks so we cleaned and cleaned. Oh how wonderful it looks now...simply wonderful! After we got Cam's room cleaned I headed out to get groceries and a few other things, it was a long day, but thankfully we are ready for Camryn to come home.
Tonight is hopefully our last night apart and I can hardly believe it. I can hardly believe tomorrow I will drive down to UCLA alone and come home with Jay & Cam...my eyes tear up just thinking about it. We've missed our girl at home...we've missed the sound of Camryn throughout the rooms...and she's coming home...
Tomorrow is Camryn's homecoming...Praising the Lord for making it all possible. Praising Him for walking with Camryn through some hard days, some scary moments, and holding her, protecting her and loving her.
And you know who is probably the most excited??? Wyatt. He is so thrilled that his best friend is coming home tomorrow...oh the joy!
Believe it...Camryn is coming home!
Saturday, June 27, 2009
day +23...WHAT?!?!?!
The title is courtesy of my sister Dev's response when I texted her this...
Great news...Looks like Cam is going home early this week. Amazing!!!
I thought her response was fitting, because honestly it's what my heart is saying too...WHAT?!?!
Let me catch you up...
This morning Jason called and said that Camryn's counts were much the same...sigh. But, Dr.M was on service this morning so both Jason and I were anxious to hear what his take on Camryn's counts and what his thoughts were on how much longer we'd be living our hospital life.
As we were getting settled this morning Camryn's nurse came in from rounds and said to me and Jason I've got some great news...and motions for one of us to come out in the hallway to talk. I was confused, thought maybe it was something about Cam's IV nutrition or meds...so I went out in the hallway. Camryn's nurse got a huge smile and said I just came back from rounds and the doctors are talking about sending you guys home on Monday...WHAT?!?! She said I didn't want to say anything in front of Camryn in case something prolongs it a bit, but I wanted you guys to know, but Dr.M would be rounding and explain things further.
I must admit I was beyond shocked! After the week we've had with Camryn's counts moving so very slowly I found it just amazing that going home was even part of the talk of today, let alone this week. Because various people had said things like ANC 500 for 3 consecutive days or even ANC 1000 for 3 consecutive days. Well, I don't think I need to tell you that at the rate Camryn's counts are going that was a long way off...unless of course Camryn's numbers took a HUGE jump. So, I came in looked at Jason and said there's talk of Monday, to which he looked at me like I was crazy.
So we waited to talk to Dr.M.
When Dr.M walked in he said, "Well, why are you guys still here?" To which I replied, "No one has sent us home yet." He smiled and said, "Well, I am!"...WHAT?!?!
Dr.M went on to explain that after looking over Camryn's counts he feels confident that he counts are there, just coming slowly, but her monocytes are extremely high and her netraphils are coming...in time. But, that Camryn is too healthy to be here. So, they have completely discontinued Camryn's IV nutrition and have written orders for her meds to be changed over to oral. Dr.M then went over to where Camryn was sitting coloring and talked with her one on one about what she needed to do to go home. She needed to take her meds, eat and drink, mouth care...all things that she agreed to. He chatted with her some more and just made her smile. We talked some more about odds and ends of meds and such...he explained that they will check her cyclosporin levels on Monday morning, because IV med and oral med have different absorption and that has to be checked. He went on to say that the only thing that could hold us up would be if when changing over to oral cyclosporin her gvh flares up; he doesn't foresee this happening, but it is a possibility. So we are hopeful that is not the case and everything goes smoothly when changing meds.
Can you believe it??? We can't.
We've spent much of today figuring out how to get the things done we need to for Camryn's homecoming. We need to get her room cleaned, organized...because you see little brother Wyatt has totally enjoyed going in there and checking out his sister's things. Plus, we have to deep clean things...just to get things clean and ready for our girl to come home. Plus, we need to make a serious trip to the grocery store...we've been eating most of our meals out these days and once Camryn comes home it will be all home cooked meals for us. No complaints there...just as long as Cam's home that's all that matters.
So today we've been encouraging Camryn to eat and drink...also get her other things done. She's pretty cooperative with the motivation of HOME!
We are so very thankful...beyond thankful. Hearing that Camryn is doing so well is amazing...but not only that just knowing that we'll be under one roof soon is amazing!
Can't wait to tell Wyatt! He's going to be so excited to know that his sister is coming home.
Thank you for praying for us...we still have a long ways to go in the whole recovery process, but getting home is huge for our family. Just to be together and home is exciting. It will be amazing to not have to be divided...
Oh, the smiles on our faces today...
And in the midst of all of the joy...I am thankful.
Thankful to the Lord for what he does...How he leaves us amazed.
AMAZING!
Great news...Looks like Cam is going home early this week. Amazing!!!
I thought her response was fitting, because honestly it's what my heart is saying too...WHAT?!?!
Let me catch you up...
This morning Jason called and said that Camryn's counts were much the same...sigh. But, Dr.M was on service this morning so both Jason and I were anxious to hear what his take on Camryn's counts and what his thoughts were on how much longer we'd be living our hospital life.
As we were getting settled this morning Camryn's nurse came in from rounds and said to me and Jason I've got some great news...and motions for one of us to come out in the hallway to talk. I was confused, thought maybe it was something about Cam's IV nutrition or meds...so I went out in the hallway. Camryn's nurse got a huge smile and said I just came back from rounds and the doctors are talking about sending you guys home on Monday...WHAT?!?! She said I didn't want to say anything in front of Camryn in case something prolongs it a bit, but I wanted you guys to know, but Dr.M would be rounding and explain things further.
I must admit I was beyond shocked! After the week we've had with Camryn's counts moving so very slowly I found it just amazing that going home was even part of the talk of today, let alone this week. Because various people had said things like ANC 500 for 3 consecutive days or even ANC 1000 for 3 consecutive days. Well, I don't think I need to tell you that at the rate Camryn's counts are going that was a long way off...unless of course Camryn's numbers took a HUGE jump. So, I came in looked at Jason and said there's talk of Monday, to which he looked at me like I was crazy.
So we waited to talk to Dr.M.
When Dr.M walked in he said, "Well, why are you guys still here?" To which I replied, "No one has sent us home yet." He smiled and said, "Well, I am!"...WHAT?!?!
Dr.M went on to explain that after looking over Camryn's counts he feels confident that he counts are there, just coming slowly, but her monocytes are extremely high and her netraphils are coming...in time. But, that Camryn is too healthy to be here. So, they have completely discontinued Camryn's IV nutrition and have written orders for her meds to be changed over to oral. Dr.M then went over to where Camryn was sitting coloring and talked with her one on one about what she needed to do to go home. She needed to take her meds, eat and drink, mouth care...all things that she agreed to. He chatted with her some more and just made her smile. We talked some more about odds and ends of meds and such...he explained that they will check her cyclosporin levels on Monday morning, because IV med and oral med have different absorption and that has to be checked. He went on to say that the only thing that could hold us up would be if when changing over to oral cyclosporin her gvh flares up; he doesn't foresee this happening, but it is a possibility. So we are hopeful that is not the case and everything goes smoothly when changing meds.
Can you believe it??? We can't.
We've spent much of today figuring out how to get the things done we need to for Camryn's homecoming. We need to get her room cleaned, organized...because you see little brother Wyatt has totally enjoyed going in there and checking out his sister's things. Plus, we have to deep clean things...just to get things clean and ready for our girl to come home. Plus, we need to make a serious trip to the grocery store...we've been eating most of our meals out these days and once Camryn comes home it will be all home cooked meals for us. No complaints there...just as long as Cam's home that's all that matters.
So today we've been encouraging Camryn to eat and drink...also get her other things done. She's pretty cooperative with the motivation of HOME!
We are so very thankful...beyond thankful. Hearing that Camryn is doing so well is amazing...but not only that just knowing that we'll be under one roof soon is amazing!
Can't wait to tell Wyatt! He's going to be so excited to know that his sister is coming home.
Thank you for praying for us...we still have a long ways to go in the whole recovery process, but getting home is huge for our family. Just to be together and home is exciting. It will be amazing to not have to be divided...
Oh, the smiles on our faces today...
And in the midst of all of the joy...I am thankful.
Thankful to the Lord for what he does...How he leaves us amazed.
AMAZING!
Friday, June 26, 2009
day +22...a few highlights
The Four Mikels...this is a self-portrait taken by Camryn. I like it, it captures us enjoying the moment and enjoying each other.
Camryn & Wyatt enjoying computer time...they find all sorts of games to play. Since Camryn can't run all over the place and play...Wyatt enjoys just hanging out with her, enjoying time spent with her. They are too cute together.
Me and My Girl...oh how I love this little face. Words just aren't enough to express the love that I feel for Cam. She's simply the best...
Enjoying mat time with Grandma...the kids enjoy being together, but they also enjoy spending time with their visitors. Breaks up the monotony of each day...
The Dynamic Duo...
Friday has come and almost gone...another week, funny how I honestly cannot wrap my mind around how quickly and yet how slowly it all seems to be going. Today Wyatt came to visit Camryn and of course that brought a much needed smile to her face. Camryn is so ready to be home...but, until then visits from Wy seem to lift her spirits.
The big news today is the echocardiagram showed that Camryn's blood clot is getting smaller. Yay! The shots seem to be working combined with Camryn's body being able to absorb the clot as well. We are so very thankful that the clot is not getting bigger...most likely we'll be sent home on Lovenox shots, but we are okay with that as long as they are working to shrink the clot!
Count news...well, it's still the same. In fact Cam's white count dropped a bit to .99, but her ANC is still holding at 200. So another day...hopeful for tomorrow.
Today was full of hearing the same type of thing..."it's really in Camryn's best interest that the numbers are coming in slowly, less risk of something wrong happening."..."it's better for Cam"..."it'll come, it'll come"...
We know it is best for Camryn and are beginning to really let go of the waiting...there is nothing we can do to make it go faster and just getting anxious and worrying isn't helping anything. So we'll wait...as incredibly hard as it is. But on the good side of things Camryn is eating more and more and holding her transfusions for at least a week. So really she is doing the other stuff to go home...and once the counts come we'll be ready.
But we are continually praying for counts as it is getting harder and harder on Camryn to be in the hospital...she got very discouraged today when Wyatt left. She is just tired...and I don't blame her.
So for now we wait and continue to try to make life as great as we can for both our kids...
Wyatt is enjoying being home tonight playing, coloring, doing puzzles and just liking home. He is struggling at times as he misses his sister terribly...and I hope it won't be much longer for him.
Camryn is finding things to occupy her time...she is enjoying her Barbie dolls, Littlest Pet Shop, computer, television, coloring...oh all the things we have to do with her.
Hope each of you has a wonderful weekend...hopeful to maybe post great numbers soon. Please continue to pray for Camryn...for protection from fevers, for good eating and drinking, for comfort...and numbers! Please continue to pray for Wyatt...for care, protection and security as he adjusts to his world now. And for home...that it'll be coming soon.
Until then...we patiently wait, well, really as best we can.
Camryn & Wyatt enjoying computer time...they find all sorts of games to play. Since Camryn can't run all over the place and play...Wyatt enjoys just hanging out with her, enjoying time spent with her. They are too cute together.
Me and My Girl...oh how I love this little face. Words just aren't enough to express the love that I feel for Cam. She's simply the best...
Enjoying mat time with Grandma...the kids enjoy being together, but they also enjoy spending time with their visitors. Breaks up the monotony of each day...
The Dynamic Duo...
Friday has come and almost gone...another week, funny how I honestly cannot wrap my mind around how quickly and yet how slowly it all seems to be going. Today Wyatt came to visit Camryn and of course that brought a much needed smile to her face. Camryn is so ready to be home...but, until then visits from Wy seem to lift her spirits.
The big news today is the echocardiagram showed that Camryn's blood clot is getting smaller. Yay! The shots seem to be working combined with Camryn's body being able to absorb the clot as well. We are so very thankful that the clot is not getting bigger...most likely we'll be sent home on Lovenox shots, but we are okay with that as long as they are working to shrink the clot!
Count news...well, it's still the same. In fact Cam's white count dropped a bit to .99, but her ANC is still holding at 200. So another day...hopeful for tomorrow.
Today was full of hearing the same type of thing..."it's really in Camryn's best interest that the numbers are coming in slowly, less risk of something wrong happening."..."it's better for Cam"..."it'll come, it'll come"...
We know it is best for Camryn and are beginning to really let go of the waiting...there is nothing we can do to make it go faster and just getting anxious and worrying isn't helping anything. So we'll wait...as incredibly hard as it is. But on the good side of things Camryn is eating more and more and holding her transfusions for at least a week. So really she is doing the other stuff to go home...and once the counts come we'll be ready.
But we are continually praying for counts as it is getting harder and harder on Camryn to be in the hospital...she got very discouraged today when Wyatt left. She is just tired...and I don't blame her.
So for now we wait and continue to try to make life as great as we can for both our kids...
Wyatt is enjoying being home tonight playing, coloring, doing puzzles and just liking home. He is struggling at times as he misses his sister terribly...and I hope it won't be much longer for him.
Camryn is finding things to occupy her time...she is enjoying her Barbie dolls, Littlest Pet Shop, computer, television, coloring...oh all the things we have to do with her.
Hope each of you has a wonderful weekend...hopeful to maybe post great numbers soon. Please continue to pray for Camryn...for protection from fevers, for good eating and drinking, for comfort...and numbers! Please continue to pray for Wyatt...for care, protection and security as he adjusts to his world now. And for home...that it'll be coming soon.
Until then...we patiently wait, well, really as best we can.
Thursday, June 25, 2009
day +21...three weeks, sameness and why LA is insane
Three weeks ago Camryn and Wyatt did their great dynamic duo act...amazing to think it was three weeks ago. I cannot even believe that it was three weeks ago, really. But, then I look at the calendar and the dates don't lie...in fact it was three weeks ago. Very long weeks.
We are pleased to report much of the same. In fact Camryn's lab sheet today looked like an exact replica of yesterday's...honestly no real changes at all. And if the numbers did change it was only slightly. We are seeing baby steps in her white counts, literally. Hopeful that one day soon the counts just take a jump! Camryn continues to be weaned off her IV nutrition and is doing well with the twice a day cyclosporin...honestly the days are very much the same. The talk of going home is out there, but the likelihood of next week dims as each day passes without an increase in numbers. So the talk of going home if very hopeful...but if the numbers don't support it we'll be calling UCLA home for a little longer.
Today Kathy stopped by...Kathy was Camryn first transplant nurse and Kathy has always been a "friend". Honestly, you become friends with the people who care so deeply for your children...in some ways while walking this journey they become more present friends than friends you have always had due to your isolated life. Kathy came by and chatted...she was positive, always positive. We chatted about where Camryn is at and how she's doing...baby steps was Kathy's encouragement. Baby steps. And literally it is...we have a few days of significant steps and then it feels like we are barely moving...all in time I guess. As Kathy and I were talking the tears came...
I won't lie...I fight back tears a lot while with Camryn. I want to be strong for her, I don't want her to see my frustrations or hurts...but today as Camryn slept I just cried. Kathy hugged me and just was a friend...she didn't say a word. She knows, she knows the fight parents make daily to keep moving forward, keep fighting for your children...and she knows it hurts so badly. I felt safe with Kathy...felt the freedom to cry without explanations, without trying to be strong. We continued talking and I felt a weight lifted...the tears were good. After all Jason and I are human and we are struggling to be patient day in and day out...trying to create new hopes and dreams for Camryn...and Wyatt too.
We are realizing that isolation is upon us...we don't move in the same circles we once did...we don't have the freedom to just go and do...and you know we won't have that for a long time. Our lives have changed.
They are different and yet very much the same...and today we were asked if we would be willing to talk with a family who just heard news that no parent ever should. Our answer? Of course...of course we'll talk with them...we'll try our best to encourage them, but really more than anything I'd like them to know that they are not alone. Because really, you feel so terribly alone...
And yet we live in LA where today insanity has descended upon us. Yes, if you are watching the news and know of M.ichael J.ackson's death you know that he was taken to UCLA. And yes outside our window we saw the news vans descend...crowds starting to gather...crowds trying to get into the hospital. We saw people dancing, weeping, singing...yes we had front row seats to the madness.
And as the helicopters panned in and out on the scene there was a little bald-headed little girl peering out at the world. She was asking tons of questions about why the crowd was there...why did they want to come to the hospital? Because of course she could see no reason why anyone would want to be there. Camryn watched the crowd, waved and watched...watched a world that for her right now is foreign. As we sat there...she started to cry, "I just want to go home." You know I thought the world around us is insane because an icon is gone and yet, I sit here trying to find the words to assure and love my little girl through this.
Because in the midst of the madness of LA, the news media, the celebrity life...there is a little girl trying to find meaning in it all. She's trying to figure out why she can't go home...why she has an IV pole...why she can be outside singing, dancing, running, playing...and at the heart of it she is asking a very human question, why me?
I don't have an answer...at least I haven't found a good one.
I picked up the book Crazy Love by Francis Chan today...yep, it was a timely choice. I have always like Francis Chan from my days at APU hearing him speak in chapel...he has a way of communication that is very real to me. As I sat reading his words I was driven to really consider who God is...His character, but even more so His love. His love for me...and His intimate knowledge of my life...that He chooses to know me. That He is the center of the story...
Perhaps you need to take a deep breath after thinking about the God who made galaxies and caterpillars, the One who sits enthroned and eternally praised by beings so fascinating that were they photographed, it would make primetime news for weeks. If you are not staggered, go to Isaiah 6 and Revelation 4 and read the accounts aloud and slowly, doing your best to imagine what the authors describe.
The appropriate way to end this chapter is the same way we began it - by standing in awed silence before a mighty, fearsome God, whose tremendous worth becomes even more apparent as we see our own puny selves in comparison.
And maybe that's just it...we are really small and God is really big. As I sat today and watched people flock to someone they considered big...I wonder, I just wonder...
How big, grand, beautiful, mighty, exceptional, inspirational, meaningful, powerful, and every other word to describe God is HE? And you know...
No words do HIM justice.
We are pleased to report much of the same. In fact Camryn's lab sheet today looked like an exact replica of yesterday's...honestly no real changes at all. And if the numbers did change it was only slightly. We are seeing baby steps in her white counts, literally. Hopeful that one day soon the counts just take a jump! Camryn continues to be weaned off her IV nutrition and is doing well with the twice a day cyclosporin...honestly the days are very much the same. The talk of going home is out there, but the likelihood of next week dims as each day passes without an increase in numbers. So the talk of going home if very hopeful...but if the numbers don't support it we'll be calling UCLA home for a little longer.
Today Kathy stopped by...Kathy was Camryn first transplant nurse and Kathy has always been a "friend". Honestly, you become friends with the people who care so deeply for your children...in some ways while walking this journey they become more present friends than friends you have always had due to your isolated life. Kathy came by and chatted...she was positive, always positive. We chatted about where Camryn is at and how she's doing...baby steps was Kathy's encouragement. Baby steps. And literally it is...we have a few days of significant steps and then it feels like we are barely moving...all in time I guess. As Kathy and I were talking the tears came...
I won't lie...I fight back tears a lot while with Camryn. I want to be strong for her, I don't want her to see my frustrations or hurts...but today as Camryn slept I just cried. Kathy hugged me and just was a friend...she didn't say a word. She knows, she knows the fight parents make daily to keep moving forward, keep fighting for your children...and she knows it hurts so badly. I felt safe with Kathy...felt the freedom to cry without explanations, without trying to be strong. We continued talking and I felt a weight lifted...the tears were good. After all Jason and I are human and we are struggling to be patient day in and day out...trying to create new hopes and dreams for Camryn...and Wyatt too.
We are realizing that isolation is upon us...we don't move in the same circles we once did...we don't have the freedom to just go and do...and you know we won't have that for a long time. Our lives have changed.
They are different and yet very much the same...and today we were asked if we would be willing to talk with a family who just heard news that no parent ever should. Our answer? Of course...of course we'll talk with them...we'll try our best to encourage them, but really more than anything I'd like them to know that they are not alone. Because really, you feel so terribly alone...
And yet we live in LA where today insanity has descended upon us. Yes, if you are watching the news and know of M.ichael J.ackson's death you know that he was taken to UCLA. And yes outside our window we saw the news vans descend...crowds starting to gather...crowds trying to get into the hospital. We saw people dancing, weeping, singing...yes we had front row seats to the madness.
And as the helicopters panned in and out on the scene there was a little bald-headed little girl peering out at the world. She was asking tons of questions about why the crowd was there...why did they want to come to the hospital? Because of course she could see no reason why anyone would want to be there. Camryn watched the crowd, waved and watched...watched a world that for her right now is foreign. As we sat there...she started to cry, "I just want to go home." You know I thought the world around us is insane because an icon is gone and yet, I sit here trying to find the words to assure and love my little girl through this.
Because in the midst of the madness of LA, the news media, the celebrity life...there is a little girl trying to find meaning in it all. She's trying to figure out why she can't go home...why she has an IV pole...why she can be outside singing, dancing, running, playing...and at the heart of it she is asking a very human question, why me?
I don't have an answer...at least I haven't found a good one.
I picked up the book Crazy Love by Francis Chan today...yep, it was a timely choice. I have always like Francis Chan from my days at APU hearing him speak in chapel...he has a way of communication that is very real to me. As I sat reading his words I was driven to really consider who God is...His character, but even more so His love. His love for me...and His intimate knowledge of my life...that He chooses to know me. That He is the center of the story...
Perhaps you need to take a deep breath after thinking about the God who made galaxies and caterpillars, the One who sits enthroned and eternally praised by beings so fascinating that were they photographed, it would make primetime news for weeks. If you are not staggered, go to Isaiah 6 and Revelation 4 and read the accounts aloud and slowly, doing your best to imagine what the authors describe.
The appropriate way to end this chapter is the same way we began it - by standing in awed silence before a mighty, fearsome God, whose tremendous worth becomes even more apparent as we see our own puny selves in comparison.
And maybe that's just it...we are really small and God is really big. As I sat today and watched people flock to someone they considered big...I wonder, I just wonder...
How big, grand, beautiful, mighty, exceptional, inspirational, meaningful, powerful, and every other word to describe God is HE? And you know...
No words do HIM justice.
Wednesday, June 24, 2009
day +20...He's here
Today started out a bit rocky...I wasn't feeling all that well, guess sleeping in the chair/bed will do that to a person, Camryn's doctors came in early and really had nothing new to report. I had noticed that our night nurse had left a copy of Camryn's labs on the table and I paused to look...white counts...1.15. Well, I was thankful it's an improvement on yesterday and that was good...her hemoglobin was holding well and that was good...platelets up which was good. But, the ANC was not back yet...and because her counts came up a little I did not expect much of a change. Another day at 100...sigh.
I found myself really sad, just really wanting something to give Camryn to show her that she is getting better. That all of this is for something...but a week at 100 had gotten to us. I texted Jason and just said that I was sad...nothing new and Dr. S said, "we've still got a long ways to go."
I think the most maddening thing about hospital life is that timetables are out the window...there is no for sures...no definite answers. Lots of waiting without explainations. So another day of waiting...
I laid back on the chair/bed and just prayed...not for big numbers, but rather for encouragement today. Maybe social visits from some of Camryn's lead doctors, maybe just a really good day for Camryn...I don't know, but I just prayed that in some way HE would hold us and show me that He is I AM and I am not.
Jason arrived and Camryn was thrilled to see Daddy...we settled in and decided to do Camryn's bath in the morning as Grandma was coming to visit and we didn't want to interrupt playtime with Grandma. As we were working on Camryn's bath Grandma arrived and the echocardigram technician who informed us that an echo of Camryn's heart had been ordered, mostly to check on her blood clot. Camryn did great and survived the echo just fine...the tech informally told us that the clot was still there, but they would have to compare it to Camryn's pass echos to see if the clot has grown or gotten smaller. No word yet, but it's only been a month on Lovenox so we are not anticipating it to be completely gone, just not getting any bigger.
At this point the day was moving along...I had wanted to ask about the ANC, but I honestly didn't want to hear 100 again. Jason went and asked and in a few minutes our nurse came in with the labs sheets with a smile...ANC 200! YAY!!!
After all the events of the morning Camryn and Grandma settled in to their playing...Barbies, paper dolls, all sorts of other fun things. While they played Jason and I headed out to lunch...this is our "us" time throughout this process. Sometimes lunch is merely an activity to get food, because we do have to eat; but some days it is our "us" time. Time to reconnect, time to just catch up...many people have asked how Jason and I are doing. I won't lie, going through a child in the hospital is wearing on a marriage...one here, one there...communication, time, moods...oh the list goes on of the things that a husband and wife have to navigate through. Today, Jason and I spent some very nice time together...talking about more than the moment right in front of us. We talked about things that are ours...what we like, we laughed, I cried...it was wonderful. As we walked back to the hospital I felt a bit more hopeful...that throughout this journey we would be okay. That HE would hold us...because HE is.
As we were walking in to the Hemoc hallway Dr. A was there...we smiled and in a few moments he came in to see us. A social visit it's called...just checking in. It was wonderful to see Dr. A. He is beyond a doubt a positive doctor...it was wonderful. Dr.A talked about Camryn's levels taking a look at things...he assured us that Camryn was doing well and felt that maybe a reason that her ANC isn't coming up too quickly is that her neutrophils are out in her body "healing" whether it's Camryn's throat, sinus infection or whatever...that the cells are there, just not waiting around to be counted. How encouraging...because we feel that Camryn is getting better, but not seeing numbers makes it hard to keep waiting. We talked about the steps necessary to go home and Dr.A felt once the counts come then we'd be on our way. He was pleased about the weaning of the IV nutrition and the change to twice a day cyclosporin...all steps in the right direction.
**Deep Breath** It was wonderful to see Dr. A...absolutely wonderful.
When Dr.A left we felt a lot more encouraged that Camryn is making progress and she is doing well...hard sometimes to always believe that when the numbers aren't quite there.
About thirty minutes later the door opens and it's Dr.K. **Smile** I love Dr.K...I've mentioned it before, but Dr.K has been with us since the beginning, February of 2006. So I always have valued Dr.K's opinion and take on things...and beyond everything I love that Dr.K loves Camryn. We chatted for awhile and she assured us that Camryn is doing well, she was very encouraged. Gave us some encouragement too...told us to be hopeful and keep believing that she is doing well. Dr. K said maybe next week home could be possible if numbers come this week...
Numbers...
You know as much as I want to be out of this place...just because it is incredibly hard to "live" in the hospital, I know that for now this is where Camryn's needs to be. I am hopeful...that maybe in a few days we'll see some more increases and maybe just maybe next week might be a possibility. Afterall 5 days in hospital world is a lot!
Jason left and Camryn spent some time playing with Hilary which was wonderful...it's wonderful to have someone else interact with Camryn. She enjoyed her time with Hilary very much. After Hilary, Vanya the music therapist came in...and Camryn had lots of fun listening and singing songs with Vanya.
What a very full day...
And HE was here, HE is here...
As I was saying bye to Jason he said that He prayed about this today...that in some way we'd see the doctors we need to. The doctors who would encourage us...
And we did. How great it was!
I know that this doesn't mean that tomorrow numbers will just jump up, but i do know that in the midst of everything He met us today...Jesus met us.
He was here...He made Himself known...
That He is I AM...He is everything that we need Him to be.
And tomorrow, He will be the same.
I found myself really sad, just really wanting something to give Camryn to show her that she is getting better. That all of this is for something...but a week at 100 had gotten to us. I texted Jason and just said that I was sad...nothing new and Dr. S said, "we've still got a long ways to go."
I think the most maddening thing about hospital life is that timetables are out the window...there is no for sures...no definite answers. Lots of waiting without explainations. So another day of waiting...
I laid back on the chair/bed and just prayed...not for big numbers, but rather for encouragement today. Maybe social visits from some of Camryn's lead doctors, maybe just a really good day for Camryn...I don't know, but I just prayed that in some way HE would hold us and show me that He is I AM and I am not.
Jason arrived and Camryn was thrilled to see Daddy...we settled in and decided to do Camryn's bath in the morning as Grandma was coming to visit and we didn't want to interrupt playtime with Grandma. As we were working on Camryn's bath Grandma arrived and the echocardigram technician who informed us that an echo of Camryn's heart had been ordered, mostly to check on her blood clot. Camryn did great and survived the echo just fine...the tech informally told us that the clot was still there, but they would have to compare it to Camryn's pass echos to see if the clot has grown or gotten smaller. No word yet, but it's only been a month on Lovenox so we are not anticipating it to be completely gone, just not getting any bigger.
At this point the day was moving along...I had wanted to ask about the ANC, but I honestly didn't want to hear 100 again. Jason went and asked and in a few minutes our nurse came in with the labs sheets with a smile...ANC 200! YAY!!!
After all the events of the morning Camryn and Grandma settled in to their playing...Barbies, paper dolls, all sorts of other fun things. While they played Jason and I headed out to lunch...this is our "us" time throughout this process. Sometimes lunch is merely an activity to get food, because we do have to eat; but some days it is our "us" time. Time to reconnect, time to just catch up...many people have asked how Jason and I are doing. I won't lie, going through a child in the hospital is wearing on a marriage...one here, one there...communication, time, moods...oh the list goes on of the things that a husband and wife have to navigate through. Today, Jason and I spent some very nice time together...talking about more than the moment right in front of us. We talked about things that are ours...what we like, we laughed, I cried...it was wonderful. As we walked back to the hospital I felt a bit more hopeful...that throughout this journey we would be okay. That HE would hold us...because HE is.
As we were walking in to the Hemoc hallway Dr. A was there...we smiled and in a few moments he came in to see us. A social visit it's called...just checking in. It was wonderful to see Dr. A. He is beyond a doubt a positive doctor...it was wonderful. Dr.A talked about Camryn's levels taking a look at things...he assured us that Camryn was doing well and felt that maybe a reason that her ANC isn't coming up too quickly is that her neutrophils are out in her body "healing" whether it's Camryn's throat, sinus infection or whatever...that the cells are there, just not waiting around to be counted. How encouraging...because we feel that Camryn is getting better, but not seeing numbers makes it hard to keep waiting. We talked about the steps necessary to go home and Dr.A felt once the counts come then we'd be on our way. He was pleased about the weaning of the IV nutrition and the change to twice a day cyclosporin...all steps in the right direction.
**Deep Breath** It was wonderful to see Dr. A...absolutely wonderful.
When Dr.A left we felt a lot more encouraged that Camryn is making progress and she is doing well...hard sometimes to always believe that when the numbers aren't quite there.
About thirty minutes later the door opens and it's Dr.K. **Smile** I love Dr.K...I've mentioned it before, but Dr.K has been with us since the beginning, February of 2006. So I always have valued Dr.K's opinion and take on things...and beyond everything I love that Dr.K loves Camryn. We chatted for awhile and she assured us that Camryn is doing well, she was very encouraged. Gave us some encouragement too...told us to be hopeful and keep believing that she is doing well. Dr. K said maybe next week home could be possible if numbers come this week...
Numbers...
You know as much as I want to be out of this place...just because it is incredibly hard to "live" in the hospital, I know that for now this is where Camryn's needs to be. I am hopeful...that maybe in a few days we'll see some more increases and maybe just maybe next week might be a possibility. Afterall 5 days in hospital world is a lot!
Jason left and Camryn spent some time playing with Hilary which was wonderful...it's wonderful to have someone else interact with Camryn. She enjoyed her time with Hilary very much. After Hilary, Vanya the music therapist came in...and Camryn had lots of fun listening and singing songs with Vanya.
What a very full day...
And HE was here, HE is here...
As I was saying bye to Jason he said that He prayed about this today...that in some way we'd see the doctors we need to. The doctors who would encourage us...
And we did. How great it was!
I know that this doesn't mean that tomorrow numbers will just jump up, but i do know that in the midst of everything He met us today...Jesus met us.
He was here...He made Himself known...
That He is I AM...He is everything that we need Him to be.
And tomorrow, He will be the same.
Tuesday, June 23, 2009
day +19...i am not
Tuesday is slowly coming to an end...another day down. Camryn had a good day today as her most favorite person in the world came to visit...Wyatt. No one can put a smile on her face like he can...honestly, he seems to bring a smile, laughter and just a ray of sunshine into Camryn's world. Today was spent enjoying time together and just being...sometimes I think Camryn just wants Wyatt here. She just wants him here with her...not necessarily doing everything with her, just to be here. It brings her comfort...brings her a sense of home...home.
Well, I wish I could report today that we saw significant jumps in Camryn's numbers; but we didn't. In fact her white count went from 1.09 to 1.07, nothing alarming or problematic. Just means we wait some more. Camryn's ANC is still at 100...which is okay. Everyone keeps assuring us that this is all normal, that every child is different and that Camryn is doing well. We are just waiting...
As hard as it is to wait, and believe me it's hard. When Camryn is feeling as well as she is feeling it is hard to rationalize with her that she needs to be here...we try to do our best. Trying to encourage her to eat, drink and take the baby steps necessary to show the doctors that she is ready to go home once her counts and such are ready. Today Camryn did much better eating, she is not at least trying more and starting to request certain items...all great steps in the right direction. Also, we got Camryn to drink 2 juice boxes...as the doctors have cut back her IV fluids it is important that she start drinking on her own. We are thankful that things are going well.
Because we know all to well that things don't always go well...actually today on the way back from Ralph's Jason and I were chatting about waiting and how hard it is. And as we talked we realized that as hard as the waiting is, it could be so much harder. We could be battling fevers, infections, all sorts of things...but, we aren't. And we are praying that we don't...that we just wait for counts.
And as we spend lots and lots of hours in the hospital I am reading a lot...honestly, all sorts of things. But last night I started to go back to a book I started a few weeks ago...and then today I was reading it again...
I Am Not But I Know I Am by Louie Giglio
As I was reading today the words jumped off the page...
And in light of all that I AM is I realize that I am not...
I am not the one who can change the days to make them go faster, nor am I the one who can make Camryn's labs jump. I am not the one who can erase leukemia from my family's life, nor am I the one who can fix all of this. I am not the one who wrote my children's stories, nor am I the one whose they are.
I am not, but praise the Lord that He made the way possible for me to know I AM...
Jesus...there is no greater word (as David Crowder Band says).
No greater word...
Well, I wish I could report today that we saw significant jumps in Camryn's numbers; but we didn't. In fact her white count went from 1.09 to 1.07, nothing alarming or problematic. Just means we wait some more. Camryn's ANC is still at 100...which is okay. Everyone keeps assuring us that this is all normal, that every child is different and that Camryn is doing well. We are just waiting...
As hard as it is to wait, and believe me it's hard. When Camryn is feeling as well as she is feeling it is hard to rationalize with her that she needs to be here...we try to do our best. Trying to encourage her to eat, drink and take the baby steps necessary to show the doctors that she is ready to go home once her counts and such are ready. Today Camryn did much better eating, she is not at least trying more and starting to request certain items...all great steps in the right direction. Also, we got Camryn to drink 2 juice boxes...as the doctors have cut back her IV fluids it is important that she start drinking on her own. We are thankful that things are going well.
Because we know all to well that things don't always go well...actually today on the way back from Ralph's Jason and I were chatting about waiting and how hard it is. And as we talked we realized that as hard as the waiting is, it could be so much harder. We could be battling fevers, infections, all sorts of things...but, we aren't. And we are praying that we don't...that we just wait for counts.
And as we spend lots and lots of hours in the hospital I am reading a lot...honestly, all sorts of things. But last night I started to go back to a book I started a few weeks ago...and then today I was reading it again...
I Am Not But I Know I Am by Louie Giglio
As I was reading today the words jumped off the page...
And in the days to come, when you're questioning, needing, searching, wondering, asking, and struggling, you will find His sufficiency at the end of every desperate prayer. When you cry out all the things that you are not, you'll know His answer is, "I AM."
For every cry, there is one answer:
I need help
I AM.
I need hope,
I AM.
Who could possibly be smart enough to figure this out?
I AM.
What works?
I AM.
What lasts?
I AM.
What's the latest thing?
I AM.
What's the hippest thing?
I AM.
I need a fresh start,
I AM.
I need a bigger story,
I AM.
My vision is bigger than my resources
I AM.
Nothing's real anymore,
I AM.
Who can I trust?
I AM.
I'm not sure who's on my team.
I AM.
Nobody's listening to me.
I AM.
I don't have a prayer.
I AM.
My marriage is sinking and I don't know where to turn,
I AM.
I can't hold on.
I AM.
My kids deserve more,
I AM.
I'm pouring into other, who's pouring into me?
I AM.
If we fail, who will get the job done?
I AM.
I'm not sure why I'm here,
I AM.
I've given all I can give and it's not enough,
I AM.
I'm tired.
I AM.
I quit!
I AM.
I can't!
I AM.
I need a drink.
I AM.
I need a fix,
I AM.
I need a lover,
I AM.
Somebody just hold me.
I AM.
And what does this great I AM say of Himself? he says to you and to me: "I am the way, I am the truth, and I am the life. I am the resurrection and the life. I am Savior. I am Jesus - the solution, the restorer, the builder, the answer, the Wise One, the Coming One, the Mighty One. I am the Lord and there is no other. I am God and there is none besides Me. I am the First and the Last. I am the Alpha and Omega. I am the Beginning and the End. I am the Lord, that is My name, and I will not give My glory to another, or any of My praise to idols. I AM THAT I AM, and that is My name - My memorial name to ever single generation."
And in light of all that I AM is I realize that I am not...
I am not the one who can change the days to make them go faster, nor am I the one who can make Camryn's labs jump. I am not the one who can erase leukemia from my family's life, nor am I the one who can fix all of this. I am not the one who wrote my children's stories, nor am I the one whose they are.
I am not, but praise the Lord that He made the way possible for me to know I AM...
Jesus...there is no greater word (as David Crowder Band says).
No greater word...
Monday, June 22, 2009
day +18...a new week
Today marks the fourth week Camryn has been in the hospital...one month. Wow. It feels so long and yet so short, but most of the time it feels very long. But we are hopeful that there is less hospital time in front of us...hopeful that this new week brings some steps towards home.
Camryn's white count is at 1.09, it is coming up little by little. As much as we would love to see huge increases; we know that these little increases are good. It's hard to be patient...but again this is not a fast process at all. There was some mix up in the lab today and we never officially got Camryn's ANC...so here's hoping we get some good news tomorrow. Maybe she's moved off of 100? Hoping!!!
The changes this week is the weaning of the IV nutrition which is wonderful. As Camryn eats more it is nice to know that she is making progress towards recovery and home. In other changes the doctors have changed Camryn's cyclosporin meds to twice a day instead of the continual 24 hours. This is a step in recovery as Dr.S said today...Camryn is making great progress so this is the first step. She will be on twice a day for a few days and then as the levels are checked the next step would be oral meds...and you know what oral meds means?
Home isn't too far away...
Now we are not going home anytime too soon...but, to see steps being made to begin the process is very encouraging. We are thankful, incredibly thankful that Camryn is doing so well.
Our prayer is that she continues too...that her white count continues to come up and as most of the people caring for Camryn say, "at one point it will just take off." Our prayer is that as it takes off, the GVH stays under control. For now we are liking seeing the red face, red ears...and hopeful to see some red palms and red soles on her feet.
As we were reminded today that as long as our journey is and has been we are not just beginning...as we saw a family today, who is just beginning this journey. My heart aches for them, knowing all too well that there are some deep hurts that will come...praying that the Lord meets their family as He has met us.
Jason and I went to lunch and talked about Camryn and Wyatt and just reflected on the joy that they are. We would not trade the moments with them...do we wish leukemia had never become part of our lives, absolutely. But, we can't change it...we learn to live with it. We learn to rely on Jesus...on His love for us, His plan for us...
So it is a new week...starting our fifth week, hopeful this week holds good things for Camryn. Hopeful that in the midst of it all, we continue to find our comfort, peace and hope in Jesus. Because He is the hope...
Camryn's white count is at 1.09, it is coming up little by little. As much as we would love to see huge increases; we know that these little increases are good. It's hard to be patient...but again this is not a fast process at all. There was some mix up in the lab today and we never officially got Camryn's ANC...so here's hoping we get some good news tomorrow. Maybe she's moved off of 100? Hoping!!!
The changes this week is the weaning of the IV nutrition which is wonderful. As Camryn eats more it is nice to know that she is making progress towards recovery and home. In other changes the doctors have changed Camryn's cyclosporin meds to twice a day instead of the continual 24 hours. This is a step in recovery as Dr.S said today...Camryn is making great progress so this is the first step. She will be on twice a day for a few days and then as the levels are checked the next step would be oral meds...and you know what oral meds means?
Home isn't too far away...
Now we are not going home anytime too soon...but, to see steps being made to begin the process is very encouraging. We are thankful, incredibly thankful that Camryn is doing so well.
Our prayer is that she continues too...that her white count continues to come up and as most of the people caring for Camryn say, "at one point it will just take off." Our prayer is that as it takes off, the GVH stays under control. For now we are liking seeing the red face, red ears...and hopeful to see some red palms and red soles on her feet.
As we were reminded today that as long as our journey is and has been we are not just beginning...as we saw a family today, who is just beginning this journey. My heart aches for them, knowing all too well that there are some deep hurts that will come...praying that the Lord meets their family as He has met us.
Jason and I went to lunch and talked about Camryn and Wyatt and just reflected on the joy that they are. We would not trade the moments with them...do we wish leukemia had never become part of our lives, absolutely. But, we can't change it...we learn to live with it. We learn to rely on Jesus...on His love for us, His plan for us...
So it is a new week...starting our fifth week, hopeful this week holds good things for Camryn. Hopeful that in the midst of it all, we continue to find our comfort, peace and hope in Jesus. Because He is the hope...
Sunday, June 21, 2009
daddy's day
Blessed...simply Camryn and Wyatt are blessed beyond words by their Daddy. He has given himself to them in ways that leave me speechless. His love for them runs deep and daily I am reminded that there is no greater joy in his life than loving them. I cannot express enough the love that I feel for him as I watch him love the greatest gifts we have been given. As I watch him take care of his children in ways that some fathers will never experience...having to do things that just rips your heart in two...I know that it is the love of his Heavenly Father that drives his own love for his children.
I knew from the moment when Jason first held Camryn that his heart would forever be hers. Camryn and Jason have built an incredible bond from the first moment he held her, throughout her first transplant and now through this one. He has been her biggest cheerleader, always believing that she can do it...always believing that she would overcome. Jason has spent hours in the hospital with Camryn and she knows no greater love than her Daddy. He has loved her with a love that causes him to hand her over daily to the Lord, knowing that Camryn is his darling little gift given by the Lord. Jason has loved Camryn deeply, purely and shown her what it is to be loved by her father...and has proven to be her hero.
I will never forget the day when Jason walked into Camryn's PICU room with tears streaming down his face to tell me that the baby was a perfect match for Camryn...she is going to get better. And that baby...Wyatt Jason has never failed to fill a spot in his Daddy's heart that only he can fill. My heart is very full watching Jason love Wyatt and be a father to him...teaching him to become a boy that loves Jesus. Being to him the example of what it means to truly care for others...Wyatt has the greatest example in front of him of what it means to be a father.
Even though we spent Father's Day in a hospital room, it was an incredible day. Camryn, Wyatt and I got to spend the day with Daddy and honestly we are so thankful for him. As I watched him today play, love and be there for our children I just smiled...loving him so. Jason has walked us through this journey, leading us...driving us to lean on the Lord...holding us and being hopeful. And it is his hopefulness that I love the most...
Happy Father's Day! May you celebrate the gift of the fathers in your life today, but more importantly every day...I know that I am so incredibly thankful for my Dad, my Father-in-law, my Grandpas, my Uncles, my Brothers...all incredible fathers.
And I am grateful to my Heavenly Father for loving me and with blessing my life with Jason.
Love you!
I knew from the moment when Jason first held Camryn that his heart would forever be hers. Camryn and Jason have built an incredible bond from the first moment he held her, throughout her first transplant and now through this one. He has been her biggest cheerleader, always believing that she can do it...always believing that she would overcome. Jason has spent hours in the hospital with Camryn and she knows no greater love than her Daddy. He has loved her with a love that causes him to hand her over daily to the Lord, knowing that Camryn is his darling little gift given by the Lord. Jason has loved Camryn deeply, purely and shown her what it is to be loved by her father...and has proven to be her hero.
I will never forget the day when Jason walked into Camryn's PICU room with tears streaming down his face to tell me that the baby was a perfect match for Camryn...she is going to get better. And that baby...Wyatt Jason has never failed to fill a spot in his Daddy's heart that only he can fill. My heart is very full watching Jason love Wyatt and be a father to him...teaching him to become a boy that loves Jesus. Being to him the example of what it means to truly care for others...Wyatt has the greatest example in front of him of what it means to be a father.
Even though we spent Father's Day in a hospital room, it was an incredible day. Camryn, Wyatt and I got to spend the day with Daddy and honestly we are so thankful for him. As I watched him today play, love and be there for our children I just smiled...loving him so. Jason has walked us through this journey, leading us...driving us to lean on the Lord...holding us and being hopeful. And it is his hopefulness that I love the most...
Happy Father's Day! May you celebrate the gift of the fathers in your life today, but more importantly every day...I know that I am so incredibly thankful for my Dad, my Father-in-law, my Grandpas, my Uncles, my Brothers...all incredible fathers.
And I am grateful to my Heavenly Father for loving me and with blessing my life with Jason.
Love you!
Saturday, June 20, 2009
day +16...relief
Whew...these last couple days have been a whirlwind. Our future sister-in-law's shower was today and it was wonderful. Lots of nice gifts, good food and fun company...yay Ali, we are so thrilled to have you "officially" a Mikels girl soon! After the shower I headed down to the hospital to relieve Jason who had logged some long hours here...and now it's my turn. We've been here every other night for the last couple nights and it's hard. Never quite feeling settled, but thankfully tomorrow night we'll be back on our 2 nights here, 2 nights home schedule.
Camryn has had a very good day, she's been up playing, drawing and having fun. Yes, fun can be found in a hospital room. Camryn has been doing well today physically too, her white count is up to .94, tomorrow we should bust the 1.0 mark! Her ANC is still at 100, but the doctors are confident that should boost up real soon. No transfusions today...good news. All in all Camryn is doing very well, pretty much right where her doctors want her. We are still seeing gradual signs of GVH (graft vs. host disease)...Camryn's ears will turn flaming red and then it's gone, her cheeks turn very red and then it's gone. One nurse best described it as a heat flash, here and then gone. All signs of GVH coming naturally, wonderful. We are so thankful...very thankful. Camryn is also eating more and more...little by little. Her IV nutrition is going to start being weaned tonight, so we are hopeful to see her appetite pick up a bit. Baby steps...there is no rush in the hospital.
Wyatt too had a good day, he's been shuttled here and there and today he got to stay home. He played trains and cars with Papa while Mommy and Grandma went to the shower. It was nice for him to have a day at home, to just be. Wyatt's been doing better...not as cranky, but still having some rough moments. Praying for him that these next couple weeks will go well, as I'm hopeful that it won't be too much longer for our little guy.
All in all we're okay...completely exhausted. I recently read in a book about childhood cancer that sometimes the best a parent can do when answering the question "How are you?", is to say "We're exhausted, thank you for asking." And you know sometimes is as good as it gets. It's hard to retell the story and yet you want to...you want to let people know how things are going, you want to say something, but often times you feel like a broken record. It's hard, trying to connect with people who you have known and trying to find yourself again. Because exhaustion is really what it is...hospital life is rough and to think there are 9 families living the transplant life with us here...and yet the doors are closed, but I know all too well that there is a exhaustion that runs so deep.
Hopeful for this upcoming week...for another week of increasing numbers and maybe talk of what we need to do to really make going home somewhat of a reality.
And tomorrow is Father's Day...a day for the four of us to hang out and be together. Looking forward to it...
Camryn has had a very good day, she's been up playing, drawing and having fun. Yes, fun can be found in a hospital room. Camryn has been doing well today physically too, her white count is up to .94, tomorrow we should bust the 1.0 mark! Her ANC is still at 100, but the doctors are confident that should boost up real soon. No transfusions today...good news. All in all Camryn is doing very well, pretty much right where her doctors want her. We are still seeing gradual signs of GVH (graft vs. host disease)...Camryn's ears will turn flaming red and then it's gone, her cheeks turn very red and then it's gone. One nurse best described it as a heat flash, here and then gone. All signs of GVH coming naturally, wonderful. We are so thankful...very thankful. Camryn is also eating more and more...little by little. Her IV nutrition is going to start being weaned tonight, so we are hopeful to see her appetite pick up a bit. Baby steps...there is no rush in the hospital.
Wyatt too had a good day, he's been shuttled here and there and today he got to stay home. He played trains and cars with Papa while Mommy and Grandma went to the shower. It was nice for him to have a day at home, to just be. Wyatt's been doing better...not as cranky, but still having some rough moments. Praying for him that these next couple weeks will go well, as I'm hopeful that it won't be too much longer for our little guy.
All in all we're okay...completely exhausted. I recently read in a book about childhood cancer that sometimes the best a parent can do when answering the question "How are you?", is to say "We're exhausted, thank you for asking." And you know sometimes is as good as it gets. It's hard to retell the story and yet you want to...you want to let people know how things are going, you want to say something, but often times you feel like a broken record. It's hard, trying to connect with people who you have known and trying to find yourself again. Because exhaustion is really what it is...hospital life is rough and to think there are 9 families living the transplant life with us here...and yet the doors are closed, but I know all too well that there is a exhaustion that runs so deep.
Hopeful for this upcoming week...for another week of increasing numbers and maybe talk of what we need to do to really make going home somewhat of a reality.
And tomorrow is Father's Day...a day for the four of us to hang out and be together. Looking forward to it...
Friday, June 19, 2009
day +15
Can you believe we are two weeks and a day post-transplant? I can't...so incredible to be at day +15. And even more so to be there without any significant set backs...truly a blessing.
This weekend's bit of a crazy one for us and it requires quite a lot of juggling and honestly it's hard to live in this juggling mode; but it will be nice to participate in various activities.
Today Jason was able to attend 8th grade graduation at his school, from what he told me it was a very good time to see his students again and to be there for them. The students gave Jason quite a welcome back and it was a good closure on the year. Thankful Jason was able to go and say good-bye to some of his students.
Camryn continues to do well...her white count is up to .81 and we are hoping maybe to break 1.0 tomorrow? Camryn had a very fun day...she played and played with some McDonald's play food my parents brought her. She was taking orders and playing waitress, it was quite cute. Camryn had a platelet transfusion today and most likely will have a blood transfusion tomorrow, but she continues to do well holding transfusions.
My cousin Kristi came down to donate blood today and me and Jason were able to have lunch with her. It was a very nice outing to see Kristi and just enjoy some time with her. I am so incredibly thankful for my family...they have given so much to me and I cannot express completely how much I love them. Thanks Kristi for coming down and all the love and support you've given us...love you!
Dr. A came by today and was very encouraging about Camryn and where she is at. He said her counts look so good and the steady growth is wonderful. He anticipates her numbers to start doubling at some point and her ANC to jump too. Dr.A was just what we needed today...to hear that Camryn is doing super well and that maybe just maybe we might be home sooner rather than later was just what we needed to hear. There is hope that the journey is more behind us far as living in the hospital than it is in front of us...Camryn will get there.
We are continually thankful for your thoughts and prayers...the comments left are a daily encouragement to me, thank you! This journey can be very isolated and it is nice to feel "connect" to others through the blog and emails. Thank you...
Hope each of you has a blessed weekend...
This weekend's bit of a crazy one for us and it requires quite a lot of juggling and honestly it's hard to live in this juggling mode; but it will be nice to participate in various activities.
Today Jason was able to attend 8th grade graduation at his school, from what he told me it was a very good time to see his students again and to be there for them. The students gave Jason quite a welcome back and it was a good closure on the year. Thankful Jason was able to go and say good-bye to some of his students.
Camryn continues to do well...her white count is up to .81 and we are hoping maybe to break 1.0 tomorrow? Camryn had a very fun day...she played and played with some McDonald's play food my parents brought her. She was taking orders and playing waitress, it was quite cute. Camryn had a platelet transfusion today and most likely will have a blood transfusion tomorrow, but she continues to do well holding transfusions.
My cousin Kristi came down to donate blood today and me and Jason were able to have lunch with her. It was a very nice outing to see Kristi and just enjoy some time with her. I am so incredibly thankful for my family...they have given so much to me and I cannot express completely how much I love them. Thanks Kristi for coming down and all the love and support you've given us...love you!
Dr. A came by today and was very encouraging about Camryn and where she is at. He said her counts look so good and the steady growth is wonderful. He anticipates her numbers to start doubling at some point and her ANC to jump too. Dr.A was just what we needed today...to hear that Camryn is doing super well and that maybe just maybe we might be home sooner rather than later was just what we needed to hear. There is hope that the journey is more behind us far as living in the hospital than it is in front of us...Camryn will get there.
We are continually thankful for your thoughts and prayers...the comments left are a daily encouragement to me, thank you! This journey can be very isolated and it is nice to feel "connect" to others through the blog and emails. Thank you...
Hope each of you has a blessed weekend...
Thursday, June 18, 2009
day +14
Quite honestly I feel like there is not too much new news to report...and that is a good thing. Camryn's white count is up to .68 so that is a good boost from yesterday and we are happy to see an increase. Camryn spent the whole day up playing today...no lounging in her bed for her and it was so nice to see. Both sets of grandparents came down to spend time with Camryn today and she LOVES that, it gives her a little boost of encouragement to get to see people beyond just Daddy & Mommy.
Camryn played with a really cute house design that she was given by Hilary and just enjoyed time playing with her grandmas especially...quite a grandma's girl she is. She loves her grandmas so much...and her papas too! This is one of the best days she's had thus far and it was a nice sight to see. Plus Camryn ate a little at breakfast and then again at dinner...baby steps some more.
Camryn's CT scan revealed that she has a sinus infection, maybe even a carry over of the chronic sinusitis she had awhile ago that flared up when her counts bottomed out. Anyways, it is nothing too alarming as the doctors decided to change her one antibiotic to a more broad one to handle sinus issues and prescribed some saline nasal spray. We are very thankful that nothing too critical showed up...this is something that as her counts come up things should continue to get better. And as one of her doctors said today, this wouldn't be something to keep us in the hospital.
Wyatt had a very fun day today hanging out with our friend T and her little girl...he got to eat pancakes, play and swim. His report is that he had a lot of fun...so very thankful for that. Even more thankful for our friends being willing and able to step in to help watch Wyatt and giving him such fun days. Thank you!
Jason is home tonight and I'm with Camryn...this weekend's schedule is a little more hectic as Jason has 8th grade graduation, and we have a wedding shower for Jason's little brother and his fiance, plus it's Father's day! But, it's another weekend approaching which means another week is passing rather quickly...crazy how days feel long and short all at once. It's quite odd.
We are doing well...encouraged daily at Camryn's progress and thankful that Wyatt had a good day. One day of blessings for both our kids, so thankful.
Off to watch Tinkerbell's movie and get ready for our nightly routine...another good-night.
Hopeful for a new day...His mercies are new every morning...
Camryn played with a really cute house design that she was given by Hilary and just enjoyed time playing with her grandmas especially...quite a grandma's girl she is. She loves her grandmas so much...and her papas too! This is one of the best days she's had thus far and it was a nice sight to see. Plus Camryn ate a little at breakfast and then again at dinner...baby steps some more.
Camryn's CT scan revealed that she has a sinus infection, maybe even a carry over of the chronic sinusitis she had awhile ago that flared up when her counts bottomed out. Anyways, it is nothing too alarming as the doctors decided to change her one antibiotic to a more broad one to handle sinus issues and prescribed some saline nasal spray. We are very thankful that nothing too critical showed up...this is something that as her counts come up things should continue to get better. And as one of her doctors said today, this wouldn't be something to keep us in the hospital.
Wyatt had a very fun day today hanging out with our friend T and her little girl...he got to eat pancakes, play and swim. His report is that he had a lot of fun...so very thankful for that. Even more thankful for our friends being willing and able to step in to help watch Wyatt and giving him such fun days. Thank you!
Jason is home tonight and I'm with Camryn...this weekend's schedule is a little more hectic as Jason has 8th grade graduation, and we have a wedding shower for Jason's little brother and his fiance, plus it's Father's day! But, it's another weekend approaching which means another week is passing rather quickly...crazy how days feel long and short all at once. It's quite odd.
We are doing well...encouraged daily at Camryn's progress and thankful that Wyatt had a good day. One day of blessings for both our kids, so thankful.
Off to watch Tinkerbell's movie and get ready for our nightly routine...another good-night.
Hopeful for a new day...His mercies are new every morning...
Wednesday, June 17, 2009
lucky day +13
Today is Day +13 and you know it was a lucky or rather I should say a blessed day. Wyatt and I headed down to the hospital bright and early as Wyatt decided not to sleep in today...so we headed out to see Camryn and Daddy. Called Jason on the way and he said that Dr.C had already been in and was hopeful that Camryn's counts came up again...her labs were not back as of that moment.
When I got there Jason said that our Nurse Chelsea had said that Camryn's hemoglobin and hematocrit had both risen slightly on their own...awesome! But, her white count labs were not back yet...
We started chatting with Camryn and Daddy...Wyatt opened a gift someone had sent for him and they started playing. Chelsea came walking through the door and said, "I have a great lab sheet for you today!" Camryn's white count is at .45 and she has the first glimmer of an ANC at 100! Everyone was so excited today...the doctors nurses everyone made a very big deal out of reach a 100 which made Camryn feel good. I think for the first time she started to see that she is getting better. Plus, she knows when she reaches 500 so can schedule a private playtime session in the play room...so that's an incentive for sure!
Camryn's also holding her transfusions well, which is a very good sign...you have to be able to hold transfusions before you can go home. We aren't there yet, but the fact that she is doing that now is awesome! We are so thankful that her counts continue to hold strong. Go Wy's marrow Go!!
Camryn and Wyatt enjoyed the day together doing puzzles, playing cars, talking, taking pictures...yes, it was quite a day. We were very thankful that Wyatt is able to come down, every time he comes it encouraging Camryn so much. He truly is her best medicine in more ways than one.
The other highlight of the day? Eating...Camryn hasn't eaten in a long time, her stomach after chemo and radiation couldn't take it and then her throat pain set in. But today she took her first bites of cereal...and again it was a much celebrated accomplishment. Have I told you how much I love the staff at UCLA? They truly care and know what the transplant kids need...and positive reinforcement is the biggest thing. Now, Cam's not eating too much...but it's a start and that's all we ask. Baby steps...
Tonight Camryn had to have a CT scan to check for any sinus infections, she has a runny nose so the infectious disease doctors want to cover all the options. Jason said that all went well and Camryn did what she needed to...so that is done! All that was left tonight was her Lovenox shot and then hopefully bed. Camryn's had a full day and needs a good night's sleep.
Wyatt's sleeping for the night...if you think of it would you please say a prayer for our lil guy. He is struggling...the last few days lots of tears, melt-downs and such...he just wants his family here at home. And I don't blame him...it's a lot for his two-year-old understanding. We just love our Wy so and we are thankful for him in so many ways...I am hopeful that Camryn's time in the hospital is on the shorter end and soon we'll be a family of four under one roof. Until then we continue to trust Wyatt to the Lord as much as we trust Camryn to Him.
A level of exhaustion has poured over Jason and me...we are tired, it is emotionally and physically exhausting to walk this path. We are trying our best to find rest and renewal...but it's hard. The weight of all of this seems heavier than we can bear at times...but, we continue to get up each morning, hopeful for good news. And we trust the journeys of the day to the Lord, but there are days when I think we are both just struggling not to lose it altogether. And in those moments the Lord quietly reminds my heart and mind of things that are so right and true...He speaks to my heart in the quiet moments and sometimes it is His companionship that gets me through those dark, hard times.
Just like today...I was listening to my ipod on the way home and one of my favorite songs comes on. Honestly, it was the that got my through Cam's first transplant...so I share it with you, hopeful that it speaks to your heart. Because I know that we are not the only ones walking a difficult path...countless people are and to each of you I hope that the Lord meets you wherever you are...
Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord
Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint
You won't grow weary
Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint
You won't grow weary
You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles
Tuesday, June 16, 2009
day +12...being last and boring is good
In the hospital world that we are living in these days being last and boring is good...let me explain.
When doctors round the usual order is from greatest need to least need...meaning the children with the greatest need for explanations, changes in meds or in critical situations see the doctors first. Well, we've been last this week...the doctors are taking care of pressing needs...and right now nothing is really changing. This is where boring comes in. We are boring this week...no med changes, nothing new to add...just waiting.
Today we saw another increase in numbers which is awesome, .34...slow and steady! Camryn is doing well today, she's been off her pain meds and hasn't needed any as of yet. Which is a very good sign! She also is remaining fever free...which is wonderful. Camryn does have a clear runny nose so the doctors ordered a nasal wash today...yeah, that wasn't so fun. Camryn hated that, but thankfully it didn't take too long. We will wait 24 to 48 hours to see if anything shows up. So really medically speaking it was a slow, boring day.
Camryn enjoyed just hanging out today with me and Daddy...it was a nice day. Nurse Charlotte came to visit and as always Camryn enjoys seeing her...they've got quite a bond. It is very special, I love it! Camryn is very excited for tomorrow as Wyatt is coming to visit! Actually they both are thrilled!
Wyatt enjoys getting to go visit Camryn and we are so thankful he can visit and keep her company. Wyatt's been doing well too...he is enjoying some good time with his grandparents and from all reports is just the sweetest boy ever. Wyatt continues to roll with the punches and does well with his ever-changing schedule...wish it were different for him, but we are thankful he is doing so well. Hopefully not too much longer.
We are thankful...there are rough moments though, moments when the tears fall. Moments when I'm not sure we can take another step and we do. But, only through the strength of Him...He is holding us. Even though today as I left I cried...just weary and tired of walking away, but I know that as I walked down the hall way to the car and drove home HE carried me...
Just as He is carrying us...day by day.
When doctors round the usual order is from greatest need to least need...meaning the children with the greatest need for explanations, changes in meds or in critical situations see the doctors first. Well, we've been last this week...the doctors are taking care of pressing needs...and right now nothing is really changing. This is where boring comes in. We are boring this week...no med changes, nothing new to add...just waiting.
Today we saw another increase in numbers which is awesome, .34...slow and steady! Camryn is doing well today, she's been off her pain meds and hasn't needed any as of yet. Which is a very good sign! She also is remaining fever free...which is wonderful. Camryn does have a clear runny nose so the doctors ordered a nasal wash today...yeah, that wasn't so fun. Camryn hated that, but thankfully it didn't take too long. We will wait 24 to 48 hours to see if anything shows up. So really medically speaking it was a slow, boring day.
Camryn enjoyed just hanging out today with me and Daddy...it was a nice day. Nurse Charlotte came to visit and as always Camryn enjoys seeing her...they've got quite a bond. It is very special, I love it! Camryn is very excited for tomorrow as Wyatt is coming to visit! Actually they both are thrilled!
Wyatt enjoys getting to go visit Camryn and we are so thankful he can visit and keep her company. Wyatt's been doing well too...he is enjoying some good time with his grandparents and from all reports is just the sweetest boy ever. Wyatt continues to roll with the punches and does well with his ever-changing schedule...wish it were different for him, but we are thankful he is doing so well. Hopefully not too much longer.
We are thankful...there are rough moments though, moments when the tears fall. Moments when I'm not sure we can take another step and we do. But, only through the strength of Him...He is holding us. Even though today as I left I cried...just weary and tired of walking away, but I know that as I walked down the hall way to the car and drove home HE carried me...
Just as He is carrying us...day by day.
Monday, June 15, 2009
"slow and steady..."
Heard this quote today from Dr.C...the doctors are liking what they are seeing in Camryn's numbers. Slow and steady...this is ideal and so far Camryn's following right along. Yesterday .13, today .22! We are now officially termed as engrafting...meaning Wyatt's marrow is setting up shop and producing new cells. Woohoo! Dr.C was very encouraged and said the less I have to say to you the better...Camryn is doing well and we'll continue to watch her counts throughout the week, and for signs of GVH. We've started to see some which is good news...it's coming naturally and we are praying that continues. For today the signs were all positive.
Camryn's doctors also officially discontinued her PCA (morphine pump)...YAY! Camryn is now off of pain meds and doing fabulous! She has not complained of pain at all, a true tribute to Wyatt's marrow producing white cells. Go Wy Go! Her rash and scratch on her nose are healing nicely as well...
All in all today was a positive day, so we'll take it!
Because we know that not all days are like this...in fact the doctors were very late rounding because they were discussing new diagnosis and treatments with a new family. Oh, how my heart aches for them...and as Jason said, "From where they are standing this is completely overwhelming and never ending." It's true...I don't know any details, but I ask you to pray for Camryn's fellow hemoc buddies as all these children are fighting and dealing with this that are simply not fair...but we know someone who is much bigger than all of that.
Today as Jason and I took a walk just to get some sunshine and enjoy the day...I looked at the blue sky that has been covered in June gloom lately and just breathed deeply. Thankful for today...I had a very rough time going to sleep last night, there are just those lonely, dark and quiet moments that everything comes...and I prayed that today, a Monday the start of our fourth week would be one of renewal...
And it was...Camryn enjoyed the day. Oh she hates it here, but she makes the best of it...she is learning to grin and bear it. I'm incredibly proud of her, Jason and I both are. There is so limit the love and admiration we feel for Camryn...she is truly a gift from the Lord.
Physically Camryn is doing well, emotionally she is struggling...I have shared bits of her struggle, but it's very difficult for her. Inasmuch as we are praying for her physically, we are also praying for her emotionally...this all takes it toll, on no one more than her. But we know that the Lord continues to protect not only her body, but also her heart.
Day +11...we start our fourth week...slow and steady and isn't it...
Slow and steady wins the race?
Fighting, Hoping, Surviving...to win!
Camryn's doctors also officially discontinued her PCA (morphine pump)...YAY! Camryn is now off of pain meds and doing fabulous! She has not complained of pain at all, a true tribute to Wyatt's marrow producing white cells. Go Wy Go! Her rash and scratch on her nose are healing nicely as well...
All in all today was a positive day, so we'll take it!
Because we know that not all days are like this...in fact the doctors were very late rounding because they were discussing new diagnosis and treatments with a new family. Oh, how my heart aches for them...and as Jason said, "From where they are standing this is completely overwhelming and never ending." It's true...I don't know any details, but I ask you to pray for Camryn's fellow hemoc buddies as all these children are fighting and dealing with this that are simply not fair...but we know someone who is much bigger than all of that.
Today as Jason and I took a walk just to get some sunshine and enjoy the day...I looked at the blue sky that has been covered in June gloom lately and just breathed deeply. Thankful for today...I had a very rough time going to sleep last night, there are just those lonely, dark and quiet moments that everything comes...and I prayed that today, a Monday the start of our fourth week would be one of renewal...
And it was...Camryn enjoyed the day. Oh she hates it here, but she makes the best of it...she is learning to grin and bear it. I'm incredibly proud of her, Jason and I both are. There is so limit the love and admiration we feel for Camryn...she is truly a gift from the Lord.
Physically Camryn is doing well, emotionally she is struggling...I have shared bits of her struggle, but it's very difficult for her. Inasmuch as we are praying for her physically, we are also praying for her emotionally...this all takes it toll, on no one more than her. But we know that the Lord continues to protect not only her body, but also her heart.
Day +11...we start our fourth week...slow and steady and isn't it...
Slow and steady wins the race?
Fighting, Hoping, Surviving...to win!
Sunday, June 14, 2009
day +10...easier?
You know I thought last week was going to be hard, but there's a gut feeling I cannot seem to shake that says this week is going to be hard too...I guess there really is no easy, easier or easiest in this war we are fighting.
Camryn and Wyatt had a very nice day together. Camryn was much more up for playing and messing around than the last time Wyatt was here, so that was fun for them. They played and teased and acted very much the sister and brother they are...it was cute. Although I will say that maneuvering her pole and lines makes it a little rough; but they do the best they can. Cam got very quiet when it came time for Daddy and Wyatt to leave...it just hurts her to not be home. To watch them walk out the door and want to go so badly and really not understand why.
You know it's almost as if Camryn is really experiencing isolation this time...when she was 2, she knew nothing different really. She got leukemia when she was 22 months old and what almost two year old really remembers life before? So for her first transplant really all she knew was hospitals and doctors...family came to visit...friends wasn't developmentally there...church nope, just play time. Camryn didn't know what she was missing...
And this time around...
She knows exactly what she is missing and it hurts her.
Tonight as I sit here waiting for her shot to come...while she is fast asleep wishing I could just tell them to forget about it, but I can't. I don't want to wake her with screaming...but, this is her life for now. This is not normal five year old life.
I think the weariness is beginning to take it's toll on all of us...the novelty of it all is wearing off. Tomorrow marks three weeks here and as much as I'd like to think we're half way there...I can't let my heart go there. Maybe once I see counts...but right now it honestly feels like the biggest, baddest, scariest hurdle is in front of us and all of us are tired.
Camryn did have a wonderful day...so I'm holding on to that while trying not to burst into tears over the last few hours. She was really tired, but fighting, forcing and trying to patiently deal with her is just emotionally draining. I finally got her to take her med/water combo and about 3 minutes later she threw it all back up...how's that for positive reinforcement? She did it...and then felt awful. As much as I just wanted to cry and grab her and run away I knew I can't and won't...this is where healing is happening even if it is ever so slow. There are some counts there .13 to be exact and that's an improvement from yesterday, so we are encouraged. We'd like to see a doubling of that tomorrow, and the next day, and the next...until we see those magic ANC numbers coming. And the magic ANC number? 500.
And all the while we wait for those numbers we watch for signs of GVH which should gradually increase as numbers increase...so today we were on alert for rashes. And that should be our first sign...there is also a strong possibility that an "engraftment fever" might come. Well, I'm praying it doesn't...Camryn has done so well thus far with fevers. Just praying...
All in all this journey while it is going *well* isn't easy and it doesn't really get easy...I told Jason last night that I think the first time through transplant I was so naive...fully believed that we would get through, kill the leukemia, be in isolation (which would be hard, but wouldn't last forever) and our lives would move on. That it would only be a bump, all be it a huge bump; but a bump in the road. Well, this time it's completely different. The word relapse hangs in the air, the air is a lot thicker and it's hard to catch a deep breath. Everything feels heavier...and it's not easier.
And it drives me to the feet of my Savior...to cry out to Him for it's only Him that can heal, restore, mend. Through my tears I find that there's not much more to say than...
Savior...
Hold us, Lead us, Mend us, Mold us...continually reveal yourself to us. Cause us to rejoice in the good and release the bad. To hold loosely the gifts of each day knowing that each day is a gift in and of itself. Never asking for more than You, for in you it is enough.
Jesus you have carried me
When I could not stand
Jesus you have carried me
It's all been part of your plan
Jesus you have carried me
It's your footprints in the sand
Jesus you have carried me
It was always in your hands
~ Jeremy Camp
________________________________________
a HUGE thank you for all who donated today...there were over 50 people who came out to support our family and Camryn. My heart just smiles knowing the love being out poured for Camryn.
Thank you!
Also, quite a few of you have left comments asking where you can send things for us...if you would like email (jdcmikels@yahoo.com) me and I can get you the information. I'm sorry I haven't been the best about returning comments...my time is divided and it's hard for me to catch up! But, thank you faithful readers and even more so faithful prayer warriors!
Good - night to another day...
Camryn and Wyatt had a very nice day together. Camryn was much more up for playing and messing around than the last time Wyatt was here, so that was fun for them. They played and teased and acted very much the sister and brother they are...it was cute. Although I will say that maneuvering her pole and lines makes it a little rough; but they do the best they can. Cam got very quiet when it came time for Daddy and Wyatt to leave...it just hurts her to not be home. To watch them walk out the door and want to go so badly and really not understand why.
You know it's almost as if Camryn is really experiencing isolation this time...when she was 2, she knew nothing different really. She got leukemia when she was 22 months old and what almost two year old really remembers life before? So for her first transplant really all she knew was hospitals and doctors...family came to visit...friends wasn't developmentally there...church nope, just play time. Camryn didn't know what she was missing...
And this time around...
She knows exactly what she is missing and it hurts her.
Tonight as I sit here waiting for her shot to come...while she is fast asleep wishing I could just tell them to forget about it, but I can't. I don't want to wake her with screaming...but, this is her life for now. This is not normal five year old life.
I think the weariness is beginning to take it's toll on all of us...the novelty of it all is wearing off. Tomorrow marks three weeks here and as much as I'd like to think we're half way there...I can't let my heart go there. Maybe once I see counts...but right now it honestly feels like the biggest, baddest, scariest hurdle is in front of us and all of us are tired.
Camryn did have a wonderful day...so I'm holding on to that while trying not to burst into tears over the last few hours. She was really tired, but fighting, forcing and trying to patiently deal with her is just emotionally draining. I finally got her to take her med/water combo and about 3 minutes later she threw it all back up...how's that for positive reinforcement? She did it...and then felt awful. As much as I just wanted to cry and grab her and run away I knew I can't and won't...this is where healing is happening even if it is ever so slow. There are some counts there .13 to be exact and that's an improvement from yesterday, so we are encouraged. We'd like to see a doubling of that tomorrow, and the next day, and the next...until we see those magic ANC numbers coming. And the magic ANC number? 500.
And all the while we wait for those numbers we watch for signs of GVH which should gradually increase as numbers increase...so today we were on alert for rashes. And that should be our first sign...there is also a strong possibility that an "engraftment fever" might come. Well, I'm praying it doesn't...Camryn has done so well thus far with fevers. Just praying...
All in all this journey while it is going *well* isn't easy and it doesn't really get easy...I told Jason last night that I think the first time through transplant I was so naive...fully believed that we would get through, kill the leukemia, be in isolation (which would be hard, but wouldn't last forever) and our lives would move on. That it would only be a bump, all be it a huge bump; but a bump in the road. Well, this time it's completely different. The word relapse hangs in the air, the air is a lot thicker and it's hard to catch a deep breath. Everything feels heavier...and it's not easier.
And it drives me to the feet of my Savior...to cry out to Him for it's only Him that can heal, restore, mend. Through my tears I find that there's not much more to say than...
Savior...
Hold us, Lead us, Mend us, Mold us...continually reveal yourself to us. Cause us to rejoice in the good and release the bad. To hold loosely the gifts of each day knowing that each day is a gift in and of itself. Never asking for more than You, for in you it is enough.
Jesus you have carried me
When I could not stand
Jesus you have carried me
It's all been part of your plan
Jesus you have carried me
It's your footprints in the sand
Jesus you have carried me
It was always in your hands
~ Jeremy Camp
________________________________________
a HUGE thank you for all who donated today...there were over 50 people who came out to support our family and Camryn. My heart just smiles knowing the love being out poured for Camryn.
Thank you!
Also, quite a few of you have left comments asking where you can send things for us...if you would like email (jdcmikels@yahoo.com) me and I can get you the information. I'm sorry I haven't been the best about returning comments...my time is divided and it's hard for me to catch up! But, thank you faithful readers and even more so faithful prayer warriors!
Good - night to another day...
Saturday, June 13, 2009
day +9...the week in pictures
Here's our third week in the hospital in pictures...there aren't too many as most of the week was spent with Camryn feeling pretty lousy...
But here are some highlights...
Camryn with her new haircut...she was feeling pretty horrible here, but managed a small little small. Isn't she the cutest?
This is the change of scenery for Camryn...she moves from her bed to her blue chair. Notice her IV pole...yep that is what we have to navigate to the bathroom at night. Isn't she the cutest little sleepy girl ever?
YAY...for a visit from Wyatt. Camryn was pretty knocked out from the pre-meds for her platelet and blood transfusion...but how sweet are they? Honestly, these two make my heart just smile.
Sleepy Camryn...yes, she's lost her hair now. Isn't she peaceful in the midst of the storm?
Camryn, Wyatt and Grandma working on a puzzle...this was a good day!
My favorite pics...
Yes, in the midst of all that is hospital life Camryn can still give us a smile. She is our precious girl...LOVE her so.
Camryn all mummyed up for her bath...she loves getting all wrapped up in the towels. I told her she looked like my little Eskimo...cutest ever.
How Camryn spent most of today...up in her blue chair playing on her computer. She had a very good day today...she was much more lively and talkative. Plus, the highlight? She can stick her tongue out...yes, I know not the best habit. But, for about a week her tongue hurt so bad she couldn't do it...so today that was the accomplishment.
That's our week...tomorrow Wyatt and I are heading down to spend Sunday with Camryn and Daddy...plus, people will be donating blood at our church for Camryn!
What an awesome day...thanks to everyone who is participating in giving Cam the gift of life...what a precious, priceless gift!
THANK YOU!
But here are some highlights...
Camryn with her new haircut...she was feeling pretty horrible here, but managed a small little small. Isn't she the cutest?
This is the change of scenery for Camryn...she moves from her bed to her blue chair. Notice her IV pole...yep that is what we have to navigate to the bathroom at night. Isn't she the cutest little sleepy girl ever?
YAY...for a visit from Wyatt. Camryn was pretty knocked out from the pre-meds for her platelet and blood transfusion...but how sweet are they? Honestly, these two make my heart just smile.
Sleepy Camryn...yes, she's lost her hair now. Isn't she peaceful in the midst of the storm?
Camryn, Wyatt and Grandma working on a puzzle...this was a good day!
My favorite pics...
Yes, in the midst of all that is hospital life Camryn can still give us a smile. She is our precious girl...LOVE her so.
Camryn all mummyed up for her bath...she loves getting all wrapped up in the towels. I told her she looked like my little Eskimo...cutest ever.
How Camryn spent most of today...up in her blue chair playing on her computer. She had a very good day today...she was much more lively and talkative. Plus, the highlight? She can stick her tongue out...yes, I know not the best habit. But, for about a week her tongue hurt so bad she couldn't do it...so today that was the accomplishment.
That's our week...tomorrow Wyatt and I are heading down to spend Sunday with Camryn and Daddy...plus, people will be donating blood at our church for Camryn!
What an awesome day...thanks to everyone who is participating in giving Cam the gift of life...what a precious, priceless gift!
THANK YOU!
Friday, June 12, 2009
day +8...a family hug
The four Mikels have something we like to call a family hug...the four of us wrap our arms around each other and put our heads together and smile, laugh and enjoy family...well, today was our first family hug in a long while and it felt really good.
Wyatt came down to the hospital with Daddy today to visit with Camryn and me...boy was he a breath of fresh air for Camryn. Although Camryn wasn't much for playing at first as she was getting a blood transfusion and was pretty knocked by the benadryl; but soon enough those blue eyes perked up and her and Wyatt enjoyed the day together. They played with the flashlights, watched tv, played on the computer, played puzzles and just hung out. I would say that they had a very good day...
This morning as Dr.M and Dr.W came to visit we chatted about how well Camryn seems to be doing...Dr.M said he couldn't be more pleased with her progress and truly it's wonderful to hear. Seeing Camryn so very sick is difficult and hearing that she is making progress in the right direction is awesome. As we wait for more counts to come in we approach the next hurdle...Dr.M talked with me today about this hurdle, GVH. But right now Camryn continues to do better than well...with only one antibiotic running, while most of the time there are at least two or three by now. We are praying and hoping that we can get an absolute neutrophil count (ANC) of 500 before any fevers come...or better yet no fevers at all!
Camryn had a bit of a rash on her face and a scratch on her nose that were pretty red this week, and today they are much better...a tribute to those white cells working. Our bodies are truly amazing!
All in all Camryn is doing well...still very hard moments, but she is five enduring what no child should ever have to...so we'll cut her some slack. Camryn's hair has officially fallen out...she's got her darling little bald head. I won't lie she is very self-conscious about it...she is embarrassed, and sad. She asked me today if she looked the same when she was two...I told her I would bring her pictures tomorrow and she could check them out. Trying our best for her...when she was two she wasn't as aware of all of it, but at five she is very aware and knows that she looks different from everyone else.
Dr.A also stopped by today just for a social visit...he was very encouraged by Camryn's progress and said that we should see numbers soon as marrow comes in so much faster. I told Jason that when I got home I would check out Cam's lab sheets from her first transplant and see when we started seeing an ANC...well, it was on Day+17 when we started seeing numbers...and we are hoping to maybe see number at Day+10 or so...I guess they aren't kidding that marrow is faster, it's much faster.
We are pretty anxious to start seeing numbers and to get through the next hurdle...I think we are slightly, beginning to see that there might be light at the end of the tunnel. Oh, we are no where near going home or anything like that; but we are starting to see that the days are passing and Camryn is fighting...we'll get there.
There have been countless ways that the Lord continues to reveal Himself to us...even though Camryn is doing better the tears still come. As I was driving away today I just broke down...I'm tired, we're tired of our disconnected, disjointed life. Tired of only tucking in one child at a time, tired of talking via video chats and cell phones...just tired. And yet we are thankful for those things...thankful that we have people willing to help with Wyatt to make it possible for us to be there with Camryn. Thankful that we are able to take care of our children as best as possible...thankful for the video chats, thankful for the cell phones. I guess it's more tired...just tired.
This is a hard road, not really knowing who can identify with it all...trying to realize that you are in a different club than most...trying to be thankful for a day in the hospital while the world you knew is moving without you...realizing that isolation is here...and we will struggle to find a new normal again.
Then this quote came to mind...
And it's true...allowing the Lord to meet us, to realize that He is walking with us. That the days come when we are ready to crumble, He is there. And the days when the sky is a little bluer He is there too...
Because He loves us...and He is real.
As real as anything and everything...
Including our family hug...
Wyatt came down to the hospital with Daddy today to visit with Camryn and me...boy was he a breath of fresh air for Camryn. Although Camryn wasn't much for playing at first as she was getting a blood transfusion and was pretty knocked by the benadryl; but soon enough those blue eyes perked up and her and Wyatt enjoyed the day together. They played with the flashlights, watched tv, played on the computer, played puzzles and just hung out. I would say that they had a very good day...
This morning as Dr.M and Dr.W came to visit we chatted about how well Camryn seems to be doing...Dr.M said he couldn't be more pleased with her progress and truly it's wonderful to hear. Seeing Camryn so very sick is difficult and hearing that she is making progress in the right direction is awesome. As we wait for more counts to come in we approach the next hurdle...Dr.M talked with me today about this hurdle, GVH. But right now Camryn continues to do better than well...with only one antibiotic running, while most of the time there are at least two or three by now. We are praying and hoping that we can get an absolute neutrophil count (ANC) of 500 before any fevers come...or better yet no fevers at all!
Camryn had a bit of a rash on her face and a scratch on her nose that were pretty red this week, and today they are much better...a tribute to those white cells working. Our bodies are truly amazing!
All in all Camryn is doing well...still very hard moments, but she is five enduring what no child should ever have to...so we'll cut her some slack. Camryn's hair has officially fallen out...she's got her darling little bald head. I won't lie she is very self-conscious about it...she is embarrassed, and sad. She asked me today if she looked the same when she was two...I told her I would bring her pictures tomorrow and she could check them out. Trying our best for her...when she was two she wasn't as aware of all of it, but at five she is very aware and knows that she looks different from everyone else.
Dr.A also stopped by today just for a social visit...he was very encouraged by Camryn's progress and said that we should see numbers soon as marrow comes in so much faster. I told Jason that when I got home I would check out Cam's lab sheets from her first transplant and see when we started seeing an ANC...well, it was on Day+17 when we started seeing numbers...and we are hoping to maybe see number at Day+10 or so...I guess they aren't kidding that marrow is faster, it's much faster.
We are pretty anxious to start seeing numbers and to get through the next hurdle...I think we are slightly, beginning to see that there might be light at the end of the tunnel. Oh, we are no where near going home or anything like that; but we are starting to see that the days are passing and Camryn is fighting...we'll get there.
There have been countless ways that the Lord continues to reveal Himself to us...even though Camryn is doing better the tears still come. As I was driving away today I just broke down...I'm tired, we're tired of our disconnected, disjointed life. Tired of only tucking in one child at a time, tired of talking via video chats and cell phones...just tired. And yet we are thankful for those things...thankful that we have people willing to help with Wyatt to make it possible for us to be there with Camryn. Thankful that we are able to take care of our children as best as possible...thankful for the video chats, thankful for the cell phones. I guess it's more tired...just tired.
This is a hard road, not really knowing who can identify with it all...trying to realize that you are in a different club than most...trying to be thankful for a day in the hospital while the world you knew is moving without you...realizing that isolation is here...and we will struggle to find a new normal again.
Then this quote came to mind...
There is something about keeping him (God) divine that keeps him distant, packaged, predictable. But don't do it. For heaven's sake, don't. Let him be as human as he intended to be. Let him into the mire and much of our world. For only if we let him in can he pull us out. ~ Max Lucado
And it's true...allowing the Lord to meet us, to realize that He is walking with us. That the days come when we are ready to crumble, He is there. And the days when the sky is a little bluer He is there too...
Because He loves us...and He is real.
As real as anything and everything...
Including our family hug...
Thursday, June 11, 2009
day +7...a week...signs
Today marks a week since transplant...amazing. Honestly, this has been both the longest and shortest week of our lives; either way if feels good to be here...a week.
This has been a rough week, Dr. M wasn't lying when he said that this week would be rough...Camryn has been in some severe pain and just miserable. It's been extremely hard watching her suffer...and not having a clear reason why? At some point I wonder what her little mind thinks...How did I get here? Why am I sick?...and truly I don't have good answers. But, for now she is hanging in there...she is fighting things and not wanting to do things, but that's Cam. She fights and fights within herself to do what she needs to.
And yet...
As I wrote yesterday we started seeing little signs of hopefulness...and it continued today. Last night as I took Camryn to the bathroom in the middle of the night she said, "Mommy my neck isn't hurting anymore."...YAY!!!!! So, we eagerly awaited Dr.M and Dr.W this morning to see what they would say. Dr.M was so pleased to hear that she had not pushed her pain button yesterday expect once during her shot...he was hopeful. Then he asked Camryn and she confirmed that she was feeling better...and he was thrilled. They looked at Cam's mouth and confirmed that it appears to be healing...work white cells work!
So it appears that Wyatt's marrow is engrafting and sending out white cells. Amazing, miracles! It will be a few days before we see any counts on lab sheets due to the fact that the white cells are not waiting around to be counted, they are heading to her throat to provide her healing...Amazing. We are moving in a positive direction...and healing is starting to take place.
Now as Wyatt's marrow engrafts we wait for signs of graft vs. host disease, which honestly is the next hurdle. Camryn's doctors would love to see some naturally, but if not then they will alter her meds to induce some...since Camryn is a relapsed transplant they would like to see signs of Wyatt's marrow kicking Camryn's leukemia cells out...and out for good! So we are not done yet...but we've crossed another hurdle...in a race where there are a lot of them...Please keep the prayers coming. As Dr.M said...Keep Praying!!!
Our evening has been good, Camryn has been going non-stop. It's wonderful to see those blue eyes sparkle...it's wonderful to hear that laugh, see that smile. It's wonderful to see our little girl. Camryn and I did four puzzles...we enjoyed our time together...she is feeling better.
And the highlight of the night...she drank a half a cup of water! Now that may not seem big to you, but it is HUGE for Camryn...her throat was hurting so bad she couldn't get anything down and tonight a half a cup of water! She was excited so she had her nurse go get 2 of her other favorite nurses so she could share with them. Truly, the night nursing staff has been amazing with Camryn, she loves them.
Cam is fast asleep and I just watched the Lakers win...so we'll say good-night to another day and pray that we'll continue to turn the corner tomorrow.
Please keep the prayers coming...the Lord is doing amazing things.
He is good.
This has been a rough week, Dr. M wasn't lying when he said that this week would be rough...Camryn has been in some severe pain and just miserable. It's been extremely hard watching her suffer...and not having a clear reason why? At some point I wonder what her little mind thinks...How did I get here? Why am I sick?...and truly I don't have good answers. But, for now she is hanging in there...she is fighting things and not wanting to do things, but that's Cam. She fights and fights within herself to do what she needs to.
And yet...
As I wrote yesterday we started seeing little signs of hopefulness...and it continued today. Last night as I took Camryn to the bathroom in the middle of the night she said, "Mommy my neck isn't hurting anymore."...YAY!!!!! So, we eagerly awaited Dr.M and Dr.W this morning to see what they would say. Dr.M was so pleased to hear that she had not pushed her pain button yesterday expect once during her shot...he was hopeful. Then he asked Camryn and she confirmed that she was feeling better...and he was thrilled. They looked at Cam's mouth and confirmed that it appears to be healing...work white cells work!
So it appears that Wyatt's marrow is engrafting and sending out white cells. Amazing, miracles! It will be a few days before we see any counts on lab sheets due to the fact that the white cells are not waiting around to be counted, they are heading to her throat to provide her healing...Amazing. We are moving in a positive direction...and healing is starting to take place.
Now as Wyatt's marrow engrafts we wait for signs of graft vs. host disease, which honestly is the next hurdle. Camryn's doctors would love to see some naturally, but if not then they will alter her meds to induce some...since Camryn is a relapsed transplant they would like to see signs of Wyatt's marrow kicking Camryn's leukemia cells out...and out for good! So we are not done yet...but we've crossed another hurdle...in a race where there are a lot of them...Please keep the prayers coming. As Dr.M said...Keep Praying!!!
Our evening has been good, Camryn has been going non-stop. It's wonderful to see those blue eyes sparkle...it's wonderful to hear that laugh, see that smile. It's wonderful to see our little girl. Camryn and I did four puzzles...we enjoyed our time together...she is feeling better.
And the highlight of the night...she drank a half a cup of water! Now that may not seem big to you, but it is HUGE for Camryn...her throat was hurting so bad she couldn't get anything down and tonight a half a cup of water! She was excited so she had her nurse go get 2 of her other favorite nurses so she could share with them. Truly, the night nursing staff has been amazing with Camryn, she loves them.
Cam is fast asleep and I just watched the Lakers win...so we'll say good-night to another day and pray that we'll continue to turn the corner tomorrow.
Please keep the prayers coming...the Lord is doing amazing things.
He is good.
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