Yesterday he had the motility test and we will find out this morning what is going on. The test was exhausting for him, as he had to get out of the chair in the nuclear medicine room 7 times and get up on the X Ray machine "gurney" and be slid into the machine (like and MRI tube-his head did not go in thankfully), then have a 1 minute picture taken and then off and back onto the chair. Even with help (fortunately they allowed me to be right there for the entire procedure)- each time got a little more difficult. When the third time came around he had a mini meltdown- "I just want to go back to my room and have Gatorade" and a little cry. We worked our way through this (bribery is a great motivator, expensive for grandpa, but useful and necessary) and the rest of the procedure went well. We had the movie "Despicable Me on the whole time (which I now know by heart) and this helped focus his attention away from the task of the procedure. Good idea DeVos team!
Back in his room we ordered a grilled cheese sandwich (they make great gc sandwiches here) , he drank some Gatorade with his meds, and tried to go to sleep. Unfortunately it all came back up shortly after that and he did go to sleep.Never did eat the sandwich. He rested most of the rest of the day.
Susan showed up at 1:30 for his school lesson and he was too tired to rally. This gave us a good opportunity to talk about about where we are on his education trail, how I can fill in and daily keep him engaged, what to concentrate on, etc. A good and needed session. Thanks for your flexibility and generosity Susan.
Thursday proves that we are not on our time. We, Willem's support team, can plan all the events, classes, etc., but his health, which is not in any of Our hands whatsoever but in His, dictates what and when we will be doing what and when we can. If that makes sense it will be a miracle. Hopefully you get it.
I will do a short update form the hospital if I find out results this morning and if I can figure out how to do it on my new IPhone. (It's a little scary to have a Smart phone that smarter than me!)
Take care all and your thoughts and prayers are needed, appreciated, and felt. Keep it up- It is going to be a roller coaster ride through his recovery, key word Recovery!
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Friday, September 30, 2011
Wednesday, September 28, 2011
What A Difference a Day Makes
For Tuesday 9/28 and Weds 9/29
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Tuesday, September 27, 2011
Grouchy, Grumpy, Wimpy
We all have those days and Willem had one yesterday. This does not mean progress was not made. It was.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
Monday, September 26, 2011
Eating, Walking, Talking, Laughing, Throwing Up
Good Morning to All
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
Saturday, September 24, 2011
Incredible Support Team
Willem update first:
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Thursday, September 22, 2011
And the Good Beat Goes On
Let's start with Weds 9/21:
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Tuesday, September 20, 2011
Another Good Day
Today Willem walked, ate 2 chicken McNuggets and some fries (I know and we don't care-he's eating- the asparagus can wait!), another 1/4 of the formentioned famous Subway sandwich, slept (post Chemo day), and while doing all that his numbers continue to track upward and positive. We are greatly encouraged as is Dr. C.
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Monday, September 19, 2011
Willem is improving!
First of all I want to apologize to all for the lapse in my blogging. We are up to speed and ready to go.
I want to congratulate Thomas on the excellent, heartfelt, and loving blogs that only Daddy could write. Great job Tom, you are in our daily prayers as well as Willem. To all of our friends who have been following the blog, Thank You. You truly have made a difference.
I just left the hospital and had a nice conversation with Dr.Cornelius. What a gentle kind man he is, and his level of caring for Willem is deep.
He is very pleased with the direction of recovery. See below for a few specifics. Willem just needs to be eating more on a daily basis, get a little stronger, etc.
I want to thank Susan Meltzer third grade teacher from Meadowbrook Elem. who is going to voluntarily come to Willem's room twice a week and at least keep him somewhat up to speed. I will fill in a little as well. Thank you Susan you are a saint.
Today Willem:
Ate Doritos and drank pop. Evidently he did so a bit too quickly and up it came.
Ordered from "M" a Subway ham, American cheese, regular mustard sandwich on cheese bread. When the delivery guy arrived, Willem was overjoyed -- reaching out and saying, "Subway! Subway!" I cut about a quarter if it out of the middle and he ate it slowly and drank slowly and it all stayed down with little consequence. This is Huge!
As of 4:00 pm he had already walked 3 times, eaten food, been talking, and for the most part feeling good. Wow!
He looks great with normal color which is an improvement over yellow/orange for sure.
His "numbers" have improved and continue to do so daily. Liver is almost back to 100%, kidneys are fine, blood counts where they need to be. All in all he is tracking the recovery highway with good direction. There have been a couple of episodes and there very well could be more as we move forward. We will deal with them as they arise and move forward. The key word here is forward.
As grandparents Mary and I feel blessed to have the opportunity to be involved in all three kids lives- Thank you Erin and Tom. We feel honored and are more than up to being more involved for the next year as well. Together WE can do this. This means all of you as well. Your generosity and kindness has been felt and is appreciated far more than you can comprehend. Thank You All.
I want to congratulate Thomas on the excellent, heartfelt, and loving blogs that only Daddy could write. Great job Tom, you are in our daily prayers as well as Willem. To all of our friends who have been following the blog, Thank You. You truly have made a difference.
I just left the hospital and had a nice conversation with Dr.Cornelius. What a gentle kind man he is, and his level of caring for Willem is deep.
He is very pleased with the direction of recovery. See below for a few specifics. Willem just needs to be eating more on a daily basis, get a little stronger, etc.
I want to thank Susan Meltzer third grade teacher from Meadowbrook Elem. who is going to voluntarily come to Willem's room twice a week and at least keep him somewhat up to speed. I will fill in a little as well. Thank you Susan you are a saint.
Today Willem:
Ate Doritos and drank pop. Evidently he did so a bit too quickly and up it came.
Ordered from "M" a Subway ham, American cheese, regular mustard sandwich on cheese bread. When the delivery guy arrived, Willem was overjoyed -- reaching out and saying, "Subway! Subway!" I cut about a quarter if it out of the middle and he ate it slowly and drank slowly and it all stayed down with little consequence. This is Huge!
As of 4:00 pm he had already walked 3 times, eaten food, been talking, and for the most part feeling good. Wow!
He looks great with normal color which is an improvement over yellow/orange for sure.
His "numbers" have improved and continue to do so daily. Liver is almost back to 100%, kidneys are fine, blood counts where they need to be. All in all he is tracking the recovery highway with good direction. There have been a couple of episodes and there very well could be more as we move forward. We will deal with them as they arise and move forward. The key word here is forward.
As grandparents Mary and I feel blessed to have the opportunity to be involved in all three kids lives- Thank you Erin and Tom. We feel honored and are more than up to being more involved for the next year as well. Together WE can do this. This means all of you as well. Your generosity and kindness has been felt and is appreciated far more than you can comprehend. Thank You All.
Thursday, September 15, 2011
A Very Happy Meal
Evidently Syd is having some trouble posting to the blog and I happen to have some downtime so I will post what I know.
Syd called Erin to tell her that Willem asked for chicken nuggets and french fries so, with the doctor's approval, my mother went to McDonalds and got Willem a happy meal. Willem ate, swallowed, and kept down, some bites of chicken and fries. Happy meal has never been so appropriate a name for that meal. Erin's voice trembled slightly in anticipation of telling me the information.
Syd called Erin to tell her that Willem asked for chicken nuggets and french fries so, with the doctor's approval, my mother went to McDonalds and got Willem a happy meal. Willem ate, swallowed, and kept down, some bites of chicken and fries. Happy meal has never been so appropriate a name for that meal. Erin's voice trembled slightly in anticipation of telling me the information.
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Thank you Mark for your Paypal donation. Our family is very grateful. Thank you.
Wednesday, September 14, 2011
Leaving On A Good Note
There is so much that should be said but I have no more time. All out of time. I had to say goodbye (actually, I said, "see you later." I don't say goodbye) to my son while he lay sleeping. I leave tomorrow and will return very late in 2012. What a horrible feeling this is yet it is no more pain than my comrades are feeling -- we are all feeling pain in our goodbyes to loved ones but pleased to be serving our country and doing what we have been trained for.
Willem is doing very well. He is off his antibiotics because his body is handling the healing on its own. The doctor is happy to send me off on a high note. Willem said that my going away present will be that he would swallow some food and he wanted the tomato soup that the hospital gave him. We sat him up to eat and then he threw up. Blood. he then said that he no longer wanted to eat and we understood. The blood is from his intestine and, evidently, the doctors are not worried at this juncture.
This will be my last post and then Syd will take it from here. Thank you again Syd. I do wish to thank you all again, however, for what started out as a simple means to provide up to date information about Willem. The blog soon became therapy for me and then a banner of hope for my son. Through this blog, I have learned a great deal about myself, my family, community, and humanity. I have learned what great people do to help their friends, family, and strangers. Thank you all again.
Willem is doing very well. He is off his antibiotics because his body is handling the healing on its own. The doctor is happy to send me off on a high note. Willem said that my going away present will be that he would swallow some food and he wanted the tomato soup that the hospital gave him. We sat him up to eat and then he threw up. Blood. he then said that he no longer wanted to eat and we understood. The blood is from his intestine and, evidently, the doctors are not worried at this juncture.
This will be my last post and then Syd will take it from here. Thank you again Syd. I do wish to thank you all again, however, for what started out as a simple means to provide up to date information about Willem. The blog soon became therapy for me and then a banner of hope for my son. Through this blog, I have learned a great deal about myself, my family, community, and humanity. I have learned what great people do to help their friends, family, and strangers. Thank you all again.
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Erin wishes to thank her teammates from work for their very generous donation. I thank you as well. We are grateful.
Thank you auntie Clair and uncle Dennis.
Please note that I have tried to thank everyone as much as possible but if I have forgotten anyone in my thank yous please forgive me and know that you have done a wonderful thing and our lives have been made better from your kindness. We are truly very grateful.
Tuesday, September 13, 2011
TREND
Willem's doctor stopped me as I was leaving the hospital and said that I needed to stay a little longer and to wait for her -- saying that she absolutely had to talk to me. I waited. I waited by Willem's side as he lay asleep and just stared at his beautiful face. He was smiling in his sleep. My precious boy.
The doctor came through the door all smiles and stated that she just had to share all the wonderful news about Willem. I stared at the spread sheet filled with numbers and capital letters and we discussed trends. Now that might not seem so amazing to the reader but one must understand that, last week, we couldn't discuss trends because there was nothing to indicate a trend; good or bad. We now have a trend and that trend is positive. I will leave it at that.
The doctor's words only served to put a period on the end of a sentence that Willem and I previously created together in a matter of minutes: I looked at him; he smiled; I spoke; he said my breath smelled; I asked him why he was so handsome and he replied because mommy is so beautiful. Simple banter that speaks volumes more than a spread sheet full of numbers ever could.
It amazes me to no end the amount of support that our family has received from family, friends, and people we have never met. Thank you all for being part of the team: thank you to those who have taken Lili and Wyatt; thank you to those who have brought food; thank you to those who have taken me to movies to distract me; thank you to those who have offered to help; thank you to those who have sent money; thank you to those who have made me laugh; thank you to the makers of blankets; thank you to the spaghetti dinner benefit organizer; thank you to my teammates at work and to my brothers in arms; thank you to those who made me go for a run and listened to me whine about it; thank you to all of you who prayed or sent happy thoughts. Thank you to that incredible person who left his state and came to me because I said that I needed him.
Speaking of people who always seems to be there when I need them... I was in the kitchen listening to Syd and Erin talk about curriculum night at school and how he plans on handling Willem's education and I just had to smile. I find a great amount of comfort knowing that he, Erin, and my mother are on the job and willing to do what they do so I can do my job over seas without having to worry so much.
A special thank you to Erin who is a pillar of strength and a seemingly endless supply of confidence when I have none. She is my anchor and everything that is wonderful about my life. Thank you Erin for your encouragement and support. I love you.
The doctor came through the door all smiles and stated that she just had to share all the wonderful news about Willem. I stared at the spread sheet filled with numbers and capital letters and we discussed trends. Now that might not seem so amazing to the reader but one must understand that, last week, we couldn't discuss trends because there was nothing to indicate a trend; good or bad. We now have a trend and that trend is positive. I will leave it at that.
The doctor's words only served to put a period on the end of a sentence that Willem and I previously created together in a matter of minutes: I looked at him; he smiled; I spoke; he said my breath smelled; I asked him why he was so handsome and he replied because mommy is so beautiful. Simple banter that speaks volumes more than a spread sheet full of numbers ever could.
It amazes me to no end the amount of support that our family has received from family, friends, and people we have never met. Thank you all for being part of the team: thank you to those who have taken Lili and Wyatt; thank you to those who have brought food; thank you to those who have taken me to movies to distract me; thank you to those who have offered to help; thank you to those who have sent money; thank you to those who have made me laugh; thank you to the makers of blankets; thank you to the spaghetti dinner benefit organizer; thank you to my teammates at work and to my brothers in arms; thank you to those who made me go for a run and listened to me whine about it; thank you to all of you who prayed or sent happy thoughts. Thank you to that incredible person who left his state and came to me because I said that I needed him.
Speaking of people who always seems to be there when I need them... I was in the kitchen listening to Syd and Erin talk about curriculum night at school and how he plans on handling Willem's education and I just had to smile. I find a great amount of comfort knowing that he, Erin, and my mother are on the job and willing to do what they do so I can do my job over seas without having to worry so much.
A special thank you to Erin who is a pillar of strength and a seemingly endless supply of confidence when I have none. She is my anchor and everything that is wonderful about my life. Thank you Erin for your encouragement and support. I love you.
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Thank you Nancy and aunt Peggy for bringing food over today. Great timing. Thank you!
Thank you Megan for your very generous Paypal donation. We are very grateful. Thank you.
Thank you Megan for your very generous Paypal donation. We are very grateful. Thank you.
Monday, September 12, 2011
Great day for Willem today. Willem did two laps around the ninth floor; brushed his own teeth; and played Candyland with the speech pathologist. When Erin told me over the phone I got so excited I told a bunch of my fellow soldiers while they were loading equipment and they cheered. I nearly cried. Because I do that. Also told my 1SG and I got a high five. Excellent.
I finally got to see Willem myself around 6PM and entered his room to find him sleeping. He slept until about ten minutes to eight. Before I left, I told him that I love him and he smiled and replied, "I love you too." Beautiful words. Beautiful.
Willem's good numbers are up today. Way up. Yes!
Chemo at 9pm tonight.
There will be a new author of Willem's blog come the ides of September: My step dad, Syd, is taking over the blog as I am leaving the state for training; then it's off to Afghanistan. Syd has been my partner through this nightmare and has not left my side. He has been there to hold me up emotionally when I felt I could no longer stand. He is a very positive and supportive person so I look forward to his take on Willem's recovery. Thank you, Syd, for taking over. Good luck.
I finally got to see Willem myself around 6PM and entered his room to find him sleeping. He slept until about ten minutes to eight. Before I left, I told him that I love him and he smiled and replied, "I love you too." Beautiful words. Beautiful.
Willem's good numbers are up today. Way up. Yes!
Chemo at 9pm tonight.
There will be a new author of Willem's blog come the ides of September: My step dad, Syd, is taking over the blog as I am leaving the state for training; then it's off to Afghanistan. Syd has been my partner through this nightmare and has not left my side. He has been there to hold me up emotionally when I felt I could no longer stand. He is a very positive and supportive person so I look forward to his take on Willem's recovery. Thank you, Syd, for taking over. Good luck.
Sunday, September 11, 2011
And... Take A Step Back
Yet another setback to echo our major achievements of the week; and involving blood: bloody emesis and bloody stool. In talking to the doctor, I've decided to take Erin's approach to the problem which is that it's one setback of many occurring during an upward trend; i.e., Willem's still getting better. Willem's numbers doing well enough to continue suggesting that Willem is on the mend and that this current issue is probably just another viral or bacterial infection occurring as a result of having a suppressed immune system.
Another scope was done because of the bleeding. Willem's throat looking good (healing) and nothing to suggest that he should have trouble talking or swallowing. Scope found that his esophagus healing; stomach good; bleeding in intestines. Biopsy done -- waiting for results. Lumbar puncture came back negative for anything to suggest brain damage. Trending upward.
Thank you Jane for the milk, chili, dip, and chips. Thank you for the laughs as well. Needed.
Another scope was done because of the bleeding. Willem's throat looking good (healing) and nothing to suggest that he should have trouble talking or swallowing. Scope found that his esophagus healing; stomach good; bleeding in intestines. Biopsy done -- waiting for results. Lumbar puncture came back negative for anything to suggest brain damage. Trending upward.
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Thank you aunt Peri, agian, for taking Wyatt and Liliana -- that helps us out so much. And thank you for the food and other stuff as well. You are awesome!Thank you Jane for the milk, chili, dip, and chips. Thank you for the laughs as well. Needed.
Saturday, September 10, 2011
Steady As She Goes
Nothing really significant to report today -- Willem is doing okay and had some good numbers. Still on the mend slowly but surely.
Spoke with today's nurse about the nose plugging incident that happened last night and she agreed that that was a bad method to use to get Willem to swallow. So that will not happen again and, if it does, I'm allowed to throw whomever is doing it through the wall. Well... She didn't actually say that I could but...
I entered Willem's room today to find him and Erin putting a jigsaw puzzle together. I love Erin. Erin informed me that Willem got up, with assistance, to use the bathroom. Twice. He also did some walking without the aid of a walker. These are improvements.
Erin and I took Willem for another walk around the 9th floor again before we left. I held him by his elbow the whole way but he was pretty stable. Doing well.
Spoke with today's nurse about the nose plugging incident that happened last night and she agreed that that was a bad method to use to get Willem to swallow. So that will not happen again and, if it does, I'm allowed to throw whomever is doing it through the wall. Well... She didn't actually say that I could but...
I entered Willem's room today to find him and Erin putting a jigsaw puzzle together. I love Erin. Erin informed me that Willem got up, with assistance, to use the bathroom. Twice. He also did some walking without the aid of a walker. These are improvements.
Erin and I took Willem for another walk around the 9th floor again before we left. I held him by his elbow the whole way but he was pretty stable. Doing well.
Friday, September 9, 2011
Long Day
Willem received his new broviac catheter today and I was told by Erin and Ba that everything went well. I didn't get to see Willem until 6:30pm because I was in Lansing doing what Michigan National Guard soldiers do when they gear up for war. Yes, I am in the National Guard, and, yes, I am still - at this juncture - going over seas to do my part in the fight against terror.
Erin, Wyatt, Liliana, and I arrived to find the nurse giving Willem some liquid Tylenol via a syringe and I got to witness the nurse technician plugging Willem's nose, and the nurse massaging Willem's throat in an effort to get him to swallow. They were telling him to swallow but he screamed, "I can't!" To say that I wanted to kill both of them is really putting it mildly but I'm tired and do not feel like creatively expressing the emotional volcano that was that moment. They did not, however, know I was angry; I controlled myself.
Still awaiting results of the lumbar puncture. Could be a couple days until we find out. On that note, however, I did ask Willem why he couldn't swallow and he gave me a funny look and began to dig in his ear. He then dug out an imaginary something from his ear, pinched it between his index finger and thumb, and gave it to me. I pinched the invisible something between my fingers and asked Willem what it was. He did not answer. I asked him again why he could not swallow and he said, "Because of (indistinct words)..." I asked him again and he replied, "Because of the thing I gave you from my ear." Holding the invisible something between my fingers I asked Willem what it was and he simply replied, "Eggs."
I don't know what your thoughts are after reading our conversation but you might be feeling something near what I was feeling at that moment. I asked Willem if the eggs were in his throat and he nodded. The nurse and I looked in his throat; her with her wimpy flashlight and, me, with my super duper put-the-nurse's-wimpy-flashlight-to-shame LED flashlight (conveniently attached the belt of my uniform). I had to disappoint Willem by informing him that there were little bumps in the back of his throat but they were not eggs. I added that the bumps were there because he has been sick and that it would now be okay to swallow.
The nurse will be wheeling Willem into a different room later tonight so that he can watch the Celebration on the Grand fireworks. He will have one of the best views in Grand Rapids. If he's pulling imaginary eggs from his ears then this just might turn out to be one of the best fireworks displays he's ever seen.
Erin, Wyatt, Liliana, and I arrived to find the nurse giving Willem some liquid Tylenol via a syringe and I got to witness the nurse technician plugging Willem's nose, and the nurse massaging Willem's throat in an effort to get him to swallow. They were telling him to swallow but he screamed, "I can't!" To say that I wanted to kill both of them is really putting it mildly but I'm tired and do not feel like creatively expressing the emotional volcano that was that moment. They did not, however, know I was angry; I controlled myself.
Still awaiting results of the lumbar puncture. Could be a couple days until we find out. On that note, however, I did ask Willem why he couldn't swallow and he gave me a funny look and began to dig in his ear. He then dug out an imaginary something from his ear, pinched it between his index finger and thumb, and gave it to me. I pinched the invisible something between my fingers and asked Willem what it was. He did not answer. I asked him again why he could not swallow and he said, "Because of (indistinct words)..." I asked him again and he replied, "Because of the thing I gave you from my ear." Holding the invisible something between my fingers I asked Willem what it was and he simply replied, "Eggs."
I don't know what your thoughts are after reading our conversation but you might be feeling something near what I was feeling at that moment. I asked Willem if the eggs were in his throat and he nodded. The nurse and I looked in his throat; her with her wimpy flashlight and, me, with my super duper put-the-nurse's-wimpy-flashlight-to-shame LED flashlight (conveniently attached the belt of my uniform). I had to disappoint Willem by informing him that there were little bumps in the back of his throat but they were not eggs. I added that the bumps were there because he has been sick and that it would now be okay to swallow.
The nurse will be wheeling Willem into a different room later tonight so that he can watch the Celebration on the Grand fireworks. He will have one of the best views in Grand Rapids. If he's pulling imaginary eggs from his ears then this just might turn out to be one of the best fireworks displays he's ever seen.
Thursday, September 8, 2011
Snuggle Time
Willem is getting tested for Adenovirus because of the bloody stool and bloody urine that he had a few days ago and doesn't have any more. HemOnc doctors are all back from holiday and must have missed ordering lab work while they were away. Sorry, that's me trying to be funny. So we're all back to wearing gowns and gloves again.
Willem is talking again and actually did some swallowing: swallowed some sprite and water then asked for pizza. In fact, he saw some pizza on TV and started asking for pizza again. Informed us that we can get some pizza down stairs.
HemOnc team is gong to put in a broviac catheter, which is a more permanent line, tomorrow at 2pm. They will also do another lumbar puncture to look for, or rule out. any ensephalopathy.
Willem spent a lot of time snuggling with me in the reclining chair and it was wonderful and warm. He has regained more control with his hands as evidenced by the putty sculptures he was making with with a clay-like substance called "therapeutic putty" he got from OT.
HemOnc requested blood samples from Erin, Wyatt, Lili, and myself in the very unlikely event that Willem will need a bone marrow transplant. The doctor stressed that a transplant would be very unlikely but likes to be prepared.
Found out today that the doctors here at HDCH have been in continual contact with two HLH experts: Dr. Filipovich of Cincinnati Children's Hospital, and Dr. McClain of Texas Children's Hospital.
All in all, Willem is making progress. Good day today.
Wednesday, September 7, 2011
A Resounding No Way to Baby Food
Willem did another two laps around the HemOnc floor -- again, begrudgingly I hear -- and we entered his room to find him passed out in the recliner.
For a change of pace, I hought I would try some baby food this evening - chicken and gravy - but when I approached Willem with it, I could tell right away it wasn't going to happen. I tried anyway and I was waved off with a hand and a grimace. Damn. He did take, and chew, a chocolate chip cookie, however, but he refused to swallow it. When I asked him if it hurt too much to swallow he nodded. When I asked him if it hurt too much to talk, he nodded. Double damn. Frustration ensues and we take a proverbial step backwards.
Willem is getting some nutrients via the central line but he really needs to eat and hold some real food. His ability to do so would be another step forward and would certainly make me feel better about his progress. Eating, digesting, and... Well... Pooping brings him closer to home. The HemOnc team and I may be expecting too much, however, and Willem, Willem's body, keeps reeling us right back in to reality. That reality being that this is a slow process and we need to take it easy.
We set the ball in motion, today, to take Willem's education into consideration. Tomorrow he will have some homework. And... I have a feeling we'll get reeled back in on that one as well. Baby steps.
For a change of pace, I hought I would try some baby food this evening - chicken and gravy - but when I approached Willem with it, I could tell right away it wasn't going to happen. I tried anyway and I was waved off with a hand and a grimace. Damn. He did take, and chew, a chocolate chip cookie, however, but he refused to swallow it. When I asked him if it hurt too much to swallow he nodded. When I asked him if it hurt too much to talk, he nodded. Double damn. Frustration ensues and we take a proverbial step backwards.
Willem is getting some nutrients via the central line but he really needs to eat and hold some real food. His ability to do so would be another step forward and would certainly make me feel better about his progress. Eating, digesting, and... Well... Pooping brings him closer to home. The HemOnc team and I may be expecting too much, however, and Willem, Willem's body, keeps reeling us right back in to reality. That reality being that this is a slow process and we need to take it easy.
We set the ball in motion, today, to take Willem's education into consideration. Tomorrow he will have some homework. And... I have a feeling we'll get reeled back in on that one as well. Baby steps.
Eager
PT a no go this morning. During the pre-walk exercises Willem said that he needed a break, reached for his water, and threw up before he could get a drink. He threw up about a cup of the usual green goo (bile) so no PT until this afternoon.
The Hematology/Oncology (HemOnc) team thinks that, because his whole GI system is still inflamed, he is still in a lot of pain which would cause the stomach to react unfavorably to exercise. Willem will now have a continuous flow of morphine going in to him which should help him with the PT as well as any swallowing issues.
HemOnc team have decided to add Cyclosporine as part of Willem's therapy because the team is eager to see more progress faster. Cyclosporine is usually used in transplant patients but success has been found in using it in HLH treatment as well. Side effects: hair growth is one... Now picturing Willem with a mustache.
The HemOnc team still wants to move forward with the swallow study because they fear that Willem might be at risk of aspiration pneumonia and they're eager to rule it out via the swallow study. I just hope Willem participates.
Resting now.
The Hematology/Oncology (HemOnc) team thinks that, because his whole GI system is still inflamed, he is still in a lot of pain which would cause the stomach to react unfavorably to exercise. Willem will now have a continuous flow of morphine going in to him which should help him with the PT as well as any swallowing issues.
HemOnc team have decided to add Cyclosporine as part of Willem's therapy because the team is eager to see more progress faster. Cyclosporine is usually used in transplant patients but success has been found in using it in HLH treatment as well. Side effects: hair growth is one... Now picturing Willem with a mustache.
The HemOnc team still wants to move forward with the swallow study because they fear that Willem might be at risk of aspiration pneumonia and they're eager to rule it out via the swallow study. I just hope Willem participates.
Resting now.
Chewing
We managed to get some semblance of a smile when we walked in the room this morning but when I took off my hat Willem furrowed his brow and frowned. I'm guessing he didn't like my shaved head.
Willem informed us that his throat hurts more today than it did yesterday. He's back to not wanting to swallow as much and reluctant to speak so I'm assuming his throat might be a little infected again. Willem had a little apple sauce and actually chewed on an Oreo cookie. It was quite exciting to see him chewing again -- something he has not done in over a month. I was later able to brush his teeth which is something else we haven't been able to do in a very long time.
The speech pathologist wanted to do a swallow study today which involves drinking a barium shake and watching where the fluid goes via x-ray. They wish to make sure that he is swallowing okay and that none of what he swallows is getting into his lungs. Erin and I feel that they're moving a little too quickly... If he didn't swallow an Oreo cookie -- something he likes -- what makes them think he's going to swallow yummy barium?
Offered to read to Willem but he just wanted to sleep. Cannot blame him really.
Ahhh... PT. No rest for the weary.
Can't stay as long today... Too much to do before... Well, just too much to do.
Willem informed us that his throat hurts more today than it did yesterday. He's back to not wanting to swallow as much and reluctant to speak so I'm assuming his throat might be a little infected again. Willem had a little apple sauce and actually chewed on an Oreo cookie. It was quite exciting to see him chewing again -- something he has not done in over a month. I was later able to brush his teeth which is something else we haven't been able to do in a very long time.
The speech pathologist wanted to do a swallow study today which involves drinking a barium shake and watching where the fluid goes via x-ray. They wish to make sure that he is swallowing okay and that none of what he swallows is getting into his lungs. Erin and I feel that they're moving a little too quickly... If he didn't swallow an Oreo cookie -- something he likes -- what makes them think he's going to swallow yummy barium?
Offered to read to Willem but he just wanted to sleep. Cannot blame him really.
Ahhh... PT. No rest for the weary.
Can't stay as long today... Too much to do before... Well, just too much to do.
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Thank you Michael. Again. Thank you for the amazingly generous donation to Willem's recovery. And FYI: Wyatt told me that I needed to video call you and tell you to come back. How's that for a complement.
Thank you Uncle Skip, Aunt Sharon, Dan, Susie, Trevor, Jonah, Eli, & Ty -- we saw your note when we arrived and I'm guessing that the books and Legos are from you. The book I was trying to read to Willem was one of the books you left. Thank you for stopping by -- I was hoping to be here when aunt Sharon stopped by so you could talk shop with me.
Thank you Jody for the hug. I needed that.
Tuesday, September 6, 2011
Shave And A Haircut
The die is cast. Willem's hair has fallen out enough, and at such a rate, that it's time for the head shave. I will be shaving my head as well.
Willem did TWO laps around the 9th floor and did so at a pretty good pace. It was difficult for him but he did great!
Holding Pattern
We're just kind of hanging out around Willem's bed watching everything that he does - because he's doing a lot more - and looking for every tiny positive sign of progress; whether it be physical or mental. Em was reading There's A Boy in the Girls Bathroom to Willem and he seemed cool with it for a while.
Someone came by from Mary Free Bed to deliver Willem's boots that are used to stretch out his achilles tendons. They look a lot like the early snowboard securing method before the boot/binding combo they have now.
Willem is saying some weird stuff from time to time like, "I need to get the blood out of my eyes" or "I want apple juice; it's in the pink bucket" but I'm not sure what to make of that. I have ideas about it but I don't go there. No point really.
Doctor just came in... I have only good news so no real point in giving all the numbers unless you want them. The most important number we needed -- the Absolute Neutrophil Count (ANC)-- we finally got today after having all zeros for over a week. When the ANC goes up that means his insides will start healing.
No more blood in urine or stool.
Willem is going to go walk a lap now. Cross your fingers.
Someone came by from Mary Free Bed to deliver Willem's boots that are used to stretch out his achilles tendons. They look a lot like the early snowboard securing method before the boot/binding combo they have now.
Willem is saying some weird stuff from time to time like, "I need to get the blood out of my eyes" or "I want apple juice; it's in the pink bucket" but I'm not sure what to make of that. I have ideas about it but I don't go there. No point really.
Doctor just came in... I have only good news so no real point in giving all the numbers unless you want them. The most important number we needed -- the Absolute Neutrophil Count (ANC)-- we finally got today after having all zeros for over a week. When the ANC goes up that means his insides will start healing.
No more blood in urine or stool.
Willem is going to go walk a lap now. Cross your fingers.
Monday, September 5, 2011
Another Pretty Good Day
Nothing really significant to report today. We've got forward momentum. Willem's numbers are basically all pretty good. The nurse Willem has now could play a good Nurse Ratched if anyone decides to do a One Flew Over the Cuckoo's Nest remake any time soon. Willem informed me that his nurse can turn you into stone if you look into her eyes. I'm with him on this one.*
Obviously Willem is saying more and he's definitely there, mentally. And I keep testing him: We put him in his wheelchair, which he hates, at 12:20PM and told him that he had to be in the chair for at least 30 minutes. After five minutes, he began complaining about being in the chair and begged to go to bed. I then told Willem that he had 25 more minutes to go and that he had to be in the chair until, pointing to the clock on the wall, the big hand was on the 12... He started whining that Daddy lied to him and that I told him only 25 minutes more to go. He calculated my time error instantly. Test passed.
Willem is now asking for food and has offered to split a bread stick with me. He is also expressing a desire to get out of bed to use the bathroom, in lieu of the current method.
He is on a "flatworm" kick at the moment, saying such things as "There are flatworms eating the dead skin on my hands" or "just a second, there's a flatworm in my throat."
I'm remembering, now, what Grandpa B. told me once when we were golfing: "Well... You hit it forward and you made it past the Ladies tee; and in golf, that's what you want." Willem is progressing much in the same fashion as I golf: The hits are forward (usually past the ladies tee) but are mostly slices and end up in the rough, trees, water, or the bunkers but, y'know what? The hits are still forward and, like me, he'll still finish this game and forget about it soon enough over a few pints with friends at the pub. Proverbially speaking.
I don't play golf anymore and I hope Willem never plays this game ever again either.
Obviously Willem is saying more and he's definitely there, mentally. And I keep testing him: We put him in his wheelchair, which he hates, at 12:20PM and told him that he had to be in the chair for at least 30 minutes. After five minutes, he began complaining about being in the chair and begged to go to bed. I then told Willem that he had 25 more minutes to go and that he had to be in the chair until, pointing to the clock on the wall, the big hand was on the 12... He started whining that Daddy lied to him and that I told him only 25 minutes more to go. He calculated my time error instantly. Test passed.
Willem is now asking for food and has offered to split a bread stick with me. He is also expressing a desire to get out of bed to use the bathroom, in lieu of the current method.
He is on a "flatworm" kick at the moment, saying such things as "There are flatworms eating the dead skin on my hands" or "just a second, there's a flatworm in my throat."
I'm remembering, now, what Grandpa B. told me once when we were golfing: "Well... You hit it forward and you made it past the Ladies tee; and in golf, that's what you want." Willem is progressing much in the same fashion as I golf: The hits are forward (usually past the ladies tee) but are mostly slices and end up in the rough, trees, water, or the bunkers but, y'know what? The hits are still forward and, like me, he'll still finish this game and forget about it soon enough over a few pints with friends at the pub. Proverbially speaking.
I don't play golf anymore and I hope Willem never plays this game ever again either.
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Thank you Wendy and Gary for stopping by yesterday -- Sorry we couldn't get you up to see Willem (bad timing) -- and thank you for the gifts.
Thank you Stephanie for your very generous Paypal donation. We are very grateful. Thank you.
Thank you Ba for getting lunch today. We had some great progress (and a couple minor setbacks) while you were gone and I missed having you around.
*In all fairness to Willem's current nurse, nurse Kristi in ICU set the standard and, although two have come close, one more so than the other, none can compare. Willem's current nurse is all business, and does her job well, but is no nurse Kristi.
*In all fairness to Willem's current nurse, nurse Kristi in ICU set the standard and, although two have come close, one more so than the other, none can compare. Willem's current nurse is all business, and does her job well, but is no nurse Kristi.
Sunday, September 4, 2011
Up Down Up Down Up
Willem's nurse cut us off as we were approaching his room; I could see her making a B-line towards me and I could easily see by her face that she was delivering good news. She informed me that Willem has made and incredible turn around from yesterday and I grabbed her and gave her a hug. I nearly cried. Because I do that.
Wyatt was the first to get within reach of Willem and Wyatt was quickly caught by Willem's eager hand. Willem pulled him in; hugged him; and said, "I love you Wyatt." Wyatt got the first I love you from Willem. Mommy and Daddy had to ask.
Willem then proceeded to tell me to beat up the nurses because they are evil and they hurt him.
There is some discussion of keeping the NJ feeding tube out since Willem is able to swallow and, I am ever so delighted to say, communicate his needs.
Today is a good day.
Thank you uncle Greg for entertaining Wyatt and Liliana today. And, actually, thank you for just being there for us.
Thank you Melanie for the Meijer gift card. I think we can find Erin's favorite margarita mix there. Just kidding.
Wyatt was the first to get within reach of Willem and Wyatt was quickly caught by Willem's eager hand. Willem pulled him in; hugged him; and said, "I love you Wyatt." Wyatt got the first I love you from Willem. Mommy and Daddy had to ask.
Willem then proceeded to tell me to beat up the nurses because they are evil and they hurt him.
There is some discussion of keeping the NJ feeding tube out since Willem is able to swallow and, I am ever so delighted to say, communicate his needs.
Today is a good day.
Thank you uncle Greg for entertaining Wyatt and Liliana today. And, actually, thank you for just being there for us.
Thank you Melanie for the Meijer gift card. I think we can find Erin's favorite margarita mix there. Just kidding.
Saturday, September 3, 2011
Harder to Write Today
Frustrated is the word that keeps popping into my head. One minute I'm looking at Willem and he's sound asleep and then I look over and he has his NJ tube out again. Neither Erin or I saw him move. Erin asks me why I'm acting so mad and I can only reply that it is because I am mad. I am angry and frustrated.
I stare disappointed into Willem's confused eyes, trying to convey my anger at him for pulling out his feeding tube. Does he know why I am angry? Does he know what he has done? Why can he not understand that he needs that damn tube?! My first-born son is wasting away before my eyes and I am powerless to stop it.
Willem whines and I become suffocated by my own guilt for being angry with him.
I stare disappointed into Willem's confused eyes, trying to convey my anger at him for pulling out his feeding tube. Does he know why I am angry? Does he know what he has done? Why can he not understand that he needs that damn tube?! My first-born son is wasting away before my eyes and I am powerless to stop it.
Willem whines and I become suffocated by my own guilt for being angry with him.
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Thank you John for your email to me. Your words are kind and very touching and in them I found some strength. Thank you.
Thank you Leigh for taking Wyatt and Liliana today.
Thank you Olga and RJ for the gas card. Excellent idea as we use up a lot of gas driving back and forth. Thank you very much.
Thank you Olga and RJ for the gas card. Excellent idea as we use up a lot of gas driving back and forth. Thank you very much.
Rough Morning
Arrived to find that Willem had a rough morning of fever, diarrhea, and vomiting. There was a little blood in the stool and the emesis was green (bile) from the bilirubin -- which is now up to 16.9 -- not having an exit strategy. Nothing has been grown to suggest what the diarrhea is all about so it is probably mucositis.
Willem's white blood cell count was up a little but his neutrophils were still at zero. Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.
Still holding off on feeding him via the NJ because of the diarrhea. Doctor is afraid of irritating the GI too much.
Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired. The physical therapist said his heel chords are very tight and added that he's not been getting enough PT. To which I replied, "Shame on everybody." I will now do some PT stretches with Willem.
Doctor still very hopeful and positive. There are many good numbers in relation to Willem's state of health. He is still on the mend and in very good hands.
I asked the doctor if it was okay to give him kisses. She looked at me kind of funny and said "Of course."
Willem's white blood cell count was up a little but his neutrophils were still at zero. Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.
Still holding off on feeding him via the NJ because of the diarrhea. Doctor is afraid of irritating the GI too much.
Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired. The physical therapist said his heel chords are very tight and added that he's not been getting enough PT. To which I replied, "Shame on everybody." I will now do some PT stretches with Willem.
Doctor still very hopeful and positive. There are many good numbers in relation to Willem's state of health. He is still on the mend and in very good hands.
I asked the doctor if it was okay to give him kisses. She looked at me kind of funny and said "Of course."
Friday, September 2, 2011
He Speaks!!!
Willem said his first complete sentence since August 14! I was rubbing his head while the nurse technician (NT) was changing his bedding and he was moaning. I don't remember what I said to him but he said, "I want you to get out of here."
I wasn't sure at first he said anything at all because the NT was talking with Erin and I exclaimed, "Shhh! I think he just said something!" So I asked Willem if he just said something and to say it again. "Willem. Willem. What did you just say?" Moan. Moan. "I want you to get out of here." Do you know how beautiful those words were? Wow. What an awesome experience!
Now to put it in context: He was getting his bedding changed and... um... other things so it was probably embarrassing to have us there watching. Not sure. I took it for what was said and wasn't at all hurt by it but Erin thought that maybe he was embarrassed by us being there and I thought it a good point.
Medical stuff: Lab results back from the bone marrow test and the doctor said that Willem's bone marrow is empty. What does that mean? It means that Willem's was 5% full and normal is 80 - 90% full. The test also revealed that there were still more histiocytes (the stuff that has been eating all the good cells) than there should be. The doctor stated that she was disappointed by the results but still very hopeful.
They will be holding off on the chemo until Monday.
Giving him Gamma Globulin to provide Willem with passive immunity.
Adding Prozac to his list of medications.
He's been holding on to transfusions -- which is good.
Will be increasing his calorie intake.
Bilirubin up again; to 16 which was probably because he pulled his NJ out.
Diarrhea increased so not putting anything in the NJ just yet.
I wasn't sure at first he said anything at all because the NT was talking with Erin and I exclaimed, "Shhh! I think he just said something!" So I asked Willem if he just said something and to say it again. "Willem. Willem. What did you just say?" Moan. Moan. "I want you to get out of here." Do you know how beautiful those words were? Wow. What an awesome experience!
Now to put it in context: He was getting his bedding changed and... um... other things so it was probably embarrassing to have us there watching. Not sure. I took it for what was said and wasn't at all hurt by it but Erin thought that maybe he was embarrassed by us being there and I thought it a good point.
Medical stuff: Lab results back from the bone marrow test and the doctor said that Willem's bone marrow is empty. What does that mean? It means that Willem's was 5% full and normal is 80 - 90% full. The test also revealed that there were still more histiocytes (the stuff that has been eating all the good cells) than there should be. The doctor stated that she was disappointed by the results but still very hopeful.
They will be holding off on the chemo until Monday.
Giving him Gamma Globulin to provide Willem with passive immunity.
Adding Prozac to his list of medications.
He's been holding on to transfusions -- which is good.
Will be increasing his calorie intake.
Bilirubin up again; to 16 which was probably because he pulled his NJ out.
Diarrhea increased so not putting anything in the NJ just yet.
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Thank you John for your very generous Paypal donation to Willem's recovery. Our family thanks you.
Thank you HDCH for providing sitters for Willem so I can go home and sleep and not go nutso. I predict a nice long run tomorrow.
Thank you Terri for watching Wyatt and Liliana today so Erin and I could spend more uninterrupted time with Willem. You are AWESOME!!!
One of Those Days
Willem's restraints were replaced by big white boxing glove-like mitts that doubled as a pillow for him at times which was kind of cute actually. Eventually the mitts went away too as one of the nurses had fashioned a, for lack of a better word, halter-top-like-shirt-thingy that covered the central line. Willem no longer seems interested in tugging at the line.
For me it was a long and sleepless night followed by a long and sleepless day. Lack of sleep does wonders to play tricks on one's psyche and never for the good. Found today to be particular stressful but, in looking back on it, not sure why. Today was no worse than others; clearly the lack of sleep.
Willem gave Wyatt and Liliana a hug. Heart wrenching.
Erin broke down and cried a few times while we were at our childrens' school open house when the teachers and parents came up to us to give their support. Erin said that she usually just cries in the shower so the children don't see. I did not know this. The stress is taking its toll to be sure. We are, however, finding our footing and pressing on.
We are truly blessed by the outpouring of support we've received.
For me it was a long and sleepless night followed by a long and sleepless day. Lack of sleep does wonders to play tricks on one's psyche and never for the good. Found today to be particular stressful but, in looking back on it, not sure why. Today was no worse than others; clearly the lack of sleep.
Willem gave Wyatt and Liliana a hug. Heart wrenching.
Erin broke down and cried a few times while we were at our childrens' school open house when the teachers and parents came up to us to give their support. Erin said that she usually just cries in the shower so the children don't see. I did not know this. The stress is taking its toll to be sure. We are, however, finding our footing and pressing on.
We are truly blessed by the outpouring of support we've received.
*********************************
Thank you Trevor for your Paypal donation. Thank you so much and I truly hope to meet you soon.
Thank you Greg for your Paypal donation. I miss seeing you and having our laughs. 'Could use some laughs.
Thank you Greg for your Paypal donation. I miss seeing you and having our laughs. 'Could use some laughs.
Thursday, September 1, 2011
Biopsy revealed that Willem has a serious yeast infection in his esophagus; probably caused by the chemo, steroids, and HLH.
Willem was put on Ambisome for the infection and will be on it until the infection clears. This drug is hard on kidneys so they'll be watching his kidneys closely.
Willem's white blood cell count was at zero because of chemo and HLH so they will be holding off on the VP16 / Etopocide / chemo until after his bone marrow test which is tomorrow at 11:30am. His NJ feeding tube will go back in at that time as well. He will also be started on Neupogen to bring his white blood cell counts back up.
Decreasing his steroids to half (2.5mg) two times per day which should bring him out of his funk a little more.
All in all the doc said that there is a lot that looks good. Will know more after the bone marrow test comes back.
Thank you grandma and grandpa Weston for the visit. Hopefully by the time Willem gets out of the hospital you two can figure out the parking situation.
Thank you Suzy. Wow. Thank you so much. You are a super soldier and a super person. Thank you.
Thank you Betsy for the all the food! The cookies are for mommy and daddy only, right?
Willem was put on Ambisome for the infection and will be on it until the infection clears. This drug is hard on kidneys so they'll be watching his kidneys closely.
Willem's white blood cell count was at zero because of chemo and HLH so they will be holding off on the VP16 / Etopocide / chemo until after his bone marrow test which is tomorrow at 11:30am. His NJ feeding tube will go back in at that time as well. He will also be started on Neupogen to bring his white blood cell counts back up.
Decreasing his steroids to half (2.5mg) two times per day which should bring him out of his funk a little more.
All in all the doc said that there is a lot that looks good. Will know more after the bone marrow test comes back.
***********************************
Thank you grandma and grandpa Weston for the visit. Hopefully by the time Willem gets out of the hospital you two can figure out the parking situation.
Thank you Suzy. Wow. Thank you so much. You are a super soldier and a super person. Thank you.
Thank you Betsy for the all the food! The cookies are for mommy and daddy only, right?
Preventive Medicine
Add restraints to the list of medicines. Around 5am Willem tried pulling out his main line. Now he gets restraints. This sucks.
Some poor kid is screaming in the room next door. That sucks too.
Couldn't get Willem to swallow any water this morning but he sure does like having it in his mouth. Makes him smile -- which doesn't suck.
Some poor kid is screaming in the room next door. That sucks too.
Couldn't get Willem to swallow any water this morning but he sure does like having it in his mouth. Makes him smile -- which doesn't suck.
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