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.
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