We had 14 days at home together with Jacob. It was so nice and the thing that amazes me the most is how quickly he recovers when he is out of the hospital! Just watching him, I told everyone that each day was a 100% improvement from the day before. We were busy this time with so much to do to get ready for the transplant. Unlike our other "vacations" from the hospital, this break was full of appointments, lab draws, meetings and even exams and labs for Jericho to be sure that both he and Jacob are ready for this process. ...and they are! All of the exams and reports show that they are both in great shape to do the transplant. The most encouraging part is that Jacob is not showing any signs of damage from any of the chemo he has received so far. This is what I pray for him every day, that his body will be protected from any long term damaging effects and that he will be able to heal completely from each treatment. I'm so thankful for the answers to my prayers and how much God loves him and takes care of him! It's amazing that his organs can take so much abuse and then clear that poison right out of his system and function just as they should again. This is the blessing of fighting this disease as a young kid. Their bodies are so much more resiliant than adults. As hard as it is to see our boy go through this, I'm so glad that he is young, strong and healthy enough to fight it -- and win!
During the time at home, Jacob got to spend a night camping with Josh his friend Tom and the other boys. Joshua and John stayed home with me to help with the big Yard Sale & Bakesale that Tom's family had organized for us. Jacob had a good time, although he was pretty tired and was having a lot of cramping and stomach problems. I think it just felt so good for him to be outdoors again and doing something he loves to do so much. They stayed just one night, but it was another great memory. (I hope they got some pictures!...if so, I'll post them here later)
Speaking of the Yard/BakeSale!!! It was a HUGE success! I was so amazed and just in awe all day at the amount of people who came to help and people who came to shop too! I want to list and mention a thank you to everyone who helped to make it happen, but honestly...there are so many people, I couldn't possibly. So, I'll just say thank you and add that words are not sufficient to express our gratitude. I don't know how to express the feelings and appreciation we have and explain how this has lifted a burden and brought a little peace into our lives during this stressful time. Thank you is just not enough. Another mom said something I have felt so strongly through this and since our family has become the recipients of such an outpouring of service, love and support. I've decided to start recording all the things that we have learned through this. I know my list will grow every day, but here is one thing; "I have learned what kind of person I want to be from being on the receiving end of such acts of kindess." (thank you Crystal for saying that so well) We have had many times in our lives that we have been blessed by others. This one definitely tops them all, but once again I find myself hoping and praying for the day that we can be able to bless and support others the way that we have been blessed.
Wednesday, August 17, 2011
Wednesday, August 3, 2011
New Central Line = Surgery
Around here, they make surgery sound so simple, so standard, common and even normal. It's hard to believe they were thinking of sending us home right afterwards, but they were. Had we done the surgery this morning, they said we would be home by now. But, they were "booked" for the day so they had to put Jacob on the schedule for the end of the day and since they figured it would be close to 8:00 by the time he got back to his room, they gave us the choice of staying the night & going home in the morning or just going home tonight afterwards. Well, I said (and Jacob agreed) that we would rather watch him here through the night and go home in the morning. Sooo glad we chose that route! He woke up in so much pain and he just looked awful. So, as much as I want to take him home and as anxious as we are to be home with the rest of the kids in our own beds...once again, I have to go with the Lord's timing on this one and know that he will be home when it's safe for him to be there.
The great news is that he has a perfect new central line! Yay!! It has been a real headache and even a little scary at times dealing with his old line that would get clogged up and work sluggishly at best through these last 3 rounds of treatment. After the Septic scare night when the nurse was trying so hard to get fluids in him super fast and practically had to manually pump them in, I can really understand why the Bone Marrow Docs insist on having a perfect line installed prior to transplant.
The surgeon was actually able to place the new line right through the same vein that the old one ran through. He has a new exit site where the line comes out of his chest and a little sore where the old one was, but under that it's the same vein that leads to his heart. Ugh...that still sounds soo scary. It's hard to believe how far we have come in dealing with all of this, accepting a new little pipe to his heart with gratitude. ...Bleh!
As Jacob was recovering, we were chatting with his nurse. We learned that her Dad had a bone marrow transplant just a couple of years ago at the age of 67! He is doing great now and just recently, he was out mowing her lawn and she said as she watched him that it struck her how the whole ordeal feels like a distant memory already. Looking at him now, she said no-one else would ever know what he had been through.
I pray for that day to come for Jacob when we will all look back on this ordeal as a distant memory of a difficult time that will be behind us and he can proudly say he conquered cancer! I know that our lives will never be the same and that we are changed forever because of this, but I pray daily that Jacob will not be scarred and that he can return to doing all the things he loves to do and that only him, us and those of you who read this will ever look at him and know what he has been through.
Sometimes, when I look at him I am amazed at how I have come to accept him in this condition as "normal". I look at him and it's like I can see through it all and he's still my crazy boy with his funny little comments who always makes me smile. I don't even notice the bald head or his pale complexion. Other times, I look at him as if through the eyes of someone who just met him for the first time and may be judging him by what he looks like now...as sick as he is. When I look from the outside like that, it brings a surge of emotion to realize he is that kid right now. It's hard to explain, but the best way I can try to express it is through the eyes of a stranger. Almost 2 weeks ago, in the elevator on our way down to a CT scan and MRI, there was a young girl about Jacob's age on the elevator. She looked at him and then backed up into the corner, her eyes wide and with a sad, scared look of pity on her face. I knew what she was thinking and I wanted to say, "It's Ok, this kid is a superhero! He's the toughest kid you'll ever meet. You wouldn't believe all the stuff he's been through and he may not look like it now, but he's an amazing snowboarder! Check out these pics on my phone...he's way cute too." Ya, that's what I was thinking...She was a cute girl his age and I thought he would probably be checking her out if he didn't have those blinders on his eyes cuz he was so sensitive to light that day with headaches. But, ...he never even knew she was in there. I have this feeling though, that she will never forget him.
The great news is that he has a perfect new central line! Yay!! It has been a real headache and even a little scary at times dealing with his old line that would get clogged up and work sluggishly at best through these last 3 rounds of treatment. After the Septic scare night when the nurse was trying so hard to get fluids in him super fast and practically had to manually pump them in, I can really understand why the Bone Marrow Docs insist on having a perfect line installed prior to transplant.
The surgeon was actually able to place the new line right through the same vein that the old one ran through. He has a new exit site where the line comes out of his chest and a little sore where the old one was, but under that it's the same vein that leads to his heart. Ugh...that still sounds soo scary. It's hard to believe how far we have come in dealing with all of this, accepting a new little pipe to his heart with gratitude. ...Bleh!
As Jacob was recovering, we were chatting with his nurse. We learned that her Dad had a bone marrow transplant just a couple of years ago at the age of 67! He is doing great now and just recently, he was out mowing her lawn and she said as she watched him that it struck her how the whole ordeal feels like a distant memory already. Looking at him now, she said no-one else would ever know what he had been through.
I pray for that day to come for Jacob when we will all look back on this ordeal as a distant memory of a difficult time that will be behind us and he can proudly say he conquered cancer! I know that our lives will never be the same and that we are changed forever because of this, but I pray daily that Jacob will not be scarred and that he can return to doing all the things he loves to do and that only him, us and those of you who read this will ever look at him and know what he has been through.
Sometimes, when I look at him I am amazed at how I have come to accept him in this condition as "normal". I look at him and it's like I can see through it all and he's still my crazy boy with his funny little comments who always makes me smile. I don't even notice the bald head or his pale complexion. Other times, I look at him as if through the eyes of someone who just met him for the first time and may be judging him by what he looks like now...as sick as he is. When I look from the outside like that, it brings a surge of emotion to realize he is that kid right now. It's hard to explain, but the best way I can try to express it is through the eyes of a stranger. Almost 2 weeks ago, in the elevator on our way down to a CT scan and MRI, there was a young girl about Jacob's age on the elevator. She looked at him and then backed up into the corner, her eyes wide and with a sad, scared look of pity on her face. I knew what she was thinking and I wanted to say, "It's Ok, this kid is a superhero! He's the toughest kid you'll ever meet. You wouldn't believe all the stuff he's been through and he may not look like it now, but he's an amazing snowboarder! Check out these pics on my phone...he's way cute too." Ya, that's what I was thinking...She was a cute girl his age and I thought he would probably be checking her out if he didn't have those blinders on his eyes cuz he was so sensitive to light that day with headaches. But, ...he never even knew she was in there. I have this feeling though, that she will never forget him.
Tuesday, August 2, 2011
Today was busy and Jacob was forced to be awake for pretty much the whole day. I'm thinking maybe he will actually sleep tonight for the first time in a way long time. Normally, he's awake all night long and sleeps all day. First thing this morning, the "Behavioral Health" specialist (fancy word for the psychologist) came to visit us. The nurse had already woke him up a few times to access his line for labs and give him medicines so Jacob was already frustrated by then. He had asked me to not let anyone wake him up again so I stepped outside and met with the psychologist. She wanted a little "history" on him and discuss any of my concerns. Apparently, they realize how stinkin' hard it is for a teenage boy to be locked up in a little hospital room while people poke at him all day and give him crazy medicines. A lot of kids have a hard time coping. ...go figure. Well, according to the "team", Jacob is doing pretty dang good, all things considered. But, one thing that they'd like to work on is more normal sleep patterns. Sounds like the usual teenage complaint right? I really haven't been too concerned about it, but we'll make an effort to get him turned back around. Today is going to help with that. And, I think that it will take care of itself when we get home.
So, Jacob's eyes still have me worried. His headaches are much better and pretty much gone away since they did the LP (back poke) and drained some of the extra spinal fluid to relieve pressure. He's also been taking Topomax, which is a medicine to treat migraines. We are happy that the headaches are gone, but his vision trouble really hasn't changed. He still has blind spots in both eyes and that is what worries me. Opthomology came to look at him again last night and said the optic nerves are still swollen and even a little worse than they were the last time he checked. He decided to send Jacob to the Neuro-Opthomologist for some more testing and imaging. Sooo...from 1:00 'till 4:00 today, we were at the Moran Eye Center doing vision testing, visual field testing and imaging of his retina & optic nerves. They changed his medication to another type that does a better job at actually reducing the pressure rather than just treating the symptoms. After the Neuro-Opthomologist talked to Dr. Barnette, he came by our room to let us know that from what she could see, they felt his vision would improve eventually as he finished treatment. She hopes to see some improvement with this new medication within a matter of a few days.
Because of all the hype about his eyes and the increased pressure, the Docs ordered another MRI to look more closely at the optic nerves and his spine. They said to truly evaluate and rule out some causes for the increased pressure, they have to look at the entire central nervous system and that, of course, includes the spine and the eyes...not just the brain. So, after we got back from the Eye Center, as soon as Jacob was comfortable again and drifting off to sleep, we were off to the MRI room for more imaging. They did half of the test tonight and they'll do the rest in the morning because it would have taken 2 hours to get it all done and Jacob was just too tired to do all that at once.
The rest of the schedule for tomorrow is to have Jacob's central Broviac line replaced in the afternoon. He will go to surgery at 5:30pm and we'll probably spend one more night here after that just to watch him after the procedure since it will be evening by then anyway. We should be home by Thursday morning...Yay!!!
Oh, and guess what?? Jacob's ANC is 700 today!!! Wahooo! Way to go Jacob :)
So, Jacob's eyes still have me worried. His headaches are much better and pretty much gone away since they did the LP (back poke) and drained some of the extra spinal fluid to relieve pressure. He's also been taking Topomax, which is a medicine to treat migraines. We are happy that the headaches are gone, but his vision trouble really hasn't changed. He still has blind spots in both eyes and that is what worries me. Opthomology came to look at him again last night and said the optic nerves are still swollen and even a little worse than they were the last time he checked. He decided to send Jacob to the Neuro-Opthomologist for some more testing and imaging. Sooo...from 1:00 'till 4:00 today, we were at the Moran Eye Center doing vision testing, visual field testing and imaging of his retina & optic nerves. They changed his medication to another type that does a better job at actually reducing the pressure rather than just treating the symptoms. After the Neuro-Opthomologist talked to Dr. Barnette, he came by our room to let us know that from what she could see, they felt his vision would improve eventually as he finished treatment. She hopes to see some improvement with this new medication within a matter of a few days.
Because of all the hype about his eyes and the increased pressure, the Docs ordered another MRI to look more closely at the optic nerves and his spine. They said to truly evaluate and rule out some causes for the increased pressure, they have to look at the entire central nervous system and that, of course, includes the spine and the eyes...not just the brain. So, after we got back from the Eye Center, as soon as Jacob was comfortable again and drifting off to sleep, we were off to the MRI room for more imaging. They did half of the test tonight and they'll do the rest in the morning because it would have taken 2 hours to get it all done and Jacob was just too tired to do all that at once.
The rest of the schedule for tomorrow is to have Jacob's central Broviac line replaced in the afternoon. He will go to surgery at 5:30pm and we'll probably spend one more night here after that just to watch him after the procedure since it will be evening by then anyway. We should be home by Thursday morning...Yay!!!
Oh, and guess what?? Jacob's ANC is 700 today!!! Wahooo! Way to go Jacob :)
Monday, August 1, 2011
Little Setbacks
Just when I think I've got the hang of this and I'm learning what to expect, we are thrown through a loop again and all my piddly little plans go out the window. I was feeling so good thinking I had things planned well and prepared for Jacob's third homecoming since his treatment began in April. His counts started rising on Friday, and judging by the way they climb from his previous rounds, I was pretty sure he'd be ready to leave no later than tomorrow (Tuesday 8/2). Well, the counts stayed at 100 for two days instead of climbing at all. Ok, not a big deal...that is totally normal and just as I figured, they made a bigger jump to 300 on Sunday. Waaay excited now! I thought, "He's gonna do just what I plan and be 500 by Monday". Last month they let us go home on just 200 so I figured maybe they were waiting just because it was the weekend. (Weekend Dr's don't seem to like making big decisions or changes from my experience so far) I decided to go home Sunday afternoon and clean the house to get ready for him on Monday.
Well, this is not your typical weekly clean up the house job. For Jacob, we have to disinfect everything in the house. I spent about 8 hours on it and still didn't finish a few things I wanted done (like the refrigerator: that's kind-of a big one, but important to clean out any old food & leftovers etc.) We've gotta wipe down every door knob, doorjam, lightswitch, shelves, hand rails on the stairs, all the walls, countertops and the bathroom of course. Somehow I tweaked my back in the process and then went back to the hospital to spend the night with Jacob. Sleeping on the chair/bed in the hospital room only made my back worse. By morning, I could barely move. (I forgot to mention that I already took home almost everything from Jacob's room so he wouldn't have to wait for me to pack, including my ibuprofen). I also had a sweet camping cot here with a comfy mattress and all, but I took it back home so I don't have that luxury anymore. I figured we would be seeing the Dr. early in the morning with discharge instructions.
...Not what happened. 6:00 am, I am awakened by the annoying beep, beep, beep, beep.....of his pump saying the IV nutrition is finished. Check the clock...too early to ask for his labs...wait 'till after 7:00...can't sleep, ugh. Get up, put a hot pad behind my back and lay there hoping that it will soften the pain so I can move...not working. 8:00, more beeping...check the clock...carefully get up to ask for his labs. By now, he has the day nurse and they have had their little morning pow-wow and passing of the baton (chart). She gives me the labs and apologetically says, "still at 300". I check the numbers and think "she gave me yesterday's lab report!", then, "no wait, there's yesterdays list...the lab just ran the same blood over again!" It wasn't just the ANC that was the same as the day before. Everything was the same...exept for platelets. That's the only number that told me it was no mistake. Ya, Jacob has always loved his platelets and he made some of those overnight but forgot to make anything else...that little stinker! Platelets aren't going to get you home honey.
The Dr came in to see us at about 9:00 to give us more news. Turns out, there's a couple of other obstacles Jacob has to conquer before he gets his ticket out of here. First off, he had a really rough night last night and barely slept at all because he's been on some pretty heavy pain killers and his body isn't ready to just stop them all at once. He has to be weaned off of these and that will take a few days. On top of that, one of the lines in his chest stopped working and we discovered it may have a small leak. It could have a clot or a kink, but for whatever the reason is, it's going to have to be replaced. We knew they would be replacing his line before the transplant, but with this timing and this new trouble, it's going to keep us here a little longer. Now, we are waiting for his counts to get to 500 so he can have the surgery instead of so he can leave. Since any surgery opens a risk of infection, they won't do it until his immune system is strong enough to be safe.
So... all that work I did at the house is probably going to be un-done by the time he finally is released. I'm sure the boys at home are busy re-contaminating every touchable surface in the house. Do I sound frustrated? Grrr....I don't mean to complain. I sure feel like a sissy when I think about Jacob! At least I can leave for a little while and come back. Yesterday was the first day he left his room in three weeks! It's really starting to get to him. I would do anything and clean every inch of that cute new little house of ours to get him home right now. I also forgot to mention how much I like our new little house and that I am soooo grateful that I don't have to clean every inch of that big old house we left behind! No matter how much time I spent cleaning that place, it just never, ever really felt clean to me. This one cleans up pretty good :)
We have so much to be grateful for. Every day, I thank God for the strength and endurance Jacob has to get him through this and for the strong body and organs God gave him that are dealing with all this abuse they have to put him through to make him better. Above all, I am grateful for the daily reminders that let me know that all of this is in God's hands, not mine and there is no better place for it to be. Jacob will be home when the Lord knows he is ready, when it is safe for him to leave and it's not up to me.
Well, this is not your typical weekly clean up the house job. For Jacob, we have to disinfect everything in the house. I spent about 8 hours on it and still didn't finish a few things I wanted done (like the refrigerator: that's kind-of a big one, but important to clean out any old food & leftovers etc.) We've gotta wipe down every door knob, doorjam, lightswitch, shelves, hand rails on the stairs, all the walls, countertops and the bathroom of course. Somehow I tweaked my back in the process and then went back to the hospital to spend the night with Jacob. Sleeping on the chair/bed in the hospital room only made my back worse. By morning, I could barely move. (I forgot to mention that I already took home almost everything from Jacob's room so he wouldn't have to wait for me to pack, including my ibuprofen). I also had a sweet camping cot here with a comfy mattress and all, but I took it back home so I don't have that luxury anymore. I figured we would be seeing the Dr. early in the morning with discharge instructions.
...Not what happened. 6:00 am, I am awakened by the annoying beep, beep, beep, beep.....of his pump saying the IV nutrition is finished. Check the clock...too early to ask for his labs...wait 'till after 7:00...can't sleep, ugh. Get up, put a hot pad behind my back and lay there hoping that it will soften the pain so I can move...not working. 8:00, more beeping...check the clock...carefully get up to ask for his labs. By now, he has the day nurse and they have had their little morning pow-wow and passing of the baton (chart). She gives me the labs and apologetically says, "still at 300". I check the numbers and think "she gave me yesterday's lab report!", then, "no wait, there's yesterdays list...the lab just ran the same blood over again!" It wasn't just the ANC that was the same as the day before. Everything was the same...exept for platelets. That's the only number that told me it was no mistake. Ya, Jacob has always loved his platelets and he made some of those overnight but forgot to make anything else...that little stinker! Platelets aren't going to get you home honey.
The Dr came in to see us at about 9:00 to give us more news. Turns out, there's a couple of other obstacles Jacob has to conquer before he gets his ticket out of here. First off, he had a really rough night last night and barely slept at all because he's been on some pretty heavy pain killers and his body isn't ready to just stop them all at once. He has to be weaned off of these and that will take a few days. On top of that, one of the lines in his chest stopped working and we discovered it may have a small leak. It could have a clot or a kink, but for whatever the reason is, it's going to have to be replaced. We knew they would be replacing his line before the transplant, but with this timing and this new trouble, it's going to keep us here a little longer. Now, we are waiting for his counts to get to 500 so he can have the surgery instead of so he can leave. Since any surgery opens a risk of infection, they won't do it until his immune system is strong enough to be safe.
So... all that work I did at the house is probably going to be un-done by the time he finally is released. I'm sure the boys at home are busy re-contaminating every touchable surface in the house. Do I sound frustrated? Grrr....I don't mean to complain. I sure feel like a sissy when I think about Jacob! At least I can leave for a little while and come back. Yesterday was the first day he left his room in three weeks! It's really starting to get to him. I would do anything and clean every inch of that cute new little house of ours to get him home right now. I also forgot to mention how much I like our new little house and that I am soooo grateful that I don't have to clean every inch of that big old house we left behind! No matter how much time I spent cleaning that place, it just never, ever really felt clean to me. This one cleans up pretty good :)
We have so much to be grateful for. Every day, I thank God for the strength and endurance Jacob has to get him through this and for the strong body and organs God gave him that are dealing with all this abuse they have to put him through to make him better. Above all, I am grateful for the daily reminders that let me know that all of this is in God's hands, not mine and there is no better place for it to be. Jacob will be home when the Lord knows he is ready, when it is safe for him to leave and it's not up to me.
Friday, July 29, 2011
Round 3: almost over!
Jacob's ANC is 100 today!!!
Let me explain what this means to everyone who isn't familiar with blood "counts". ANC is a type of white blood cell and you may know from science class that white blood cells are the part of our immune system that goes around our bodies battling off bacterias and infections. There's a whole bunch of different types of white blood cells, but the ANC is the one that we watch the closest for Jacob. The doctors call these the "first line of defense". So, without them...he can get sick really easily. The exciting part is that since his marrow is starting to make this little army of ANC, he will be able to come home again soon!
The doctor wants to watch him through the weekend to be sure that his little army is multiplying enough to stay keep up the fight and multiply all at the same time. As he makes these cells, they immediately get to work rushing in to anywhere he has infection or sores or anything wrong in his body. This can keep the counts low for a little while and even make them go down a bit before they come back up. So, hopefully he'll be clear by Monday and have enough of those little soldiers to let him go outside into the big wide world. :)
Let me explain what this means to everyone who isn't familiar with blood "counts". ANC is a type of white blood cell and you may know from science class that white blood cells are the part of our immune system that goes around our bodies battling off bacterias and infections. There's a whole bunch of different types of white blood cells, but the ANC is the one that we watch the closest for Jacob. The doctors call these the "first line of defense". So, without them...he can get sick really easily. The exciting part is that since his marrow is starting to make this little army of ANC, he will be able to come home again soon!
The doctor wants to watch him through the weekend to be sure that his little army is multiplying enough to stay keep up the fight and multiply all at the same time. As he makes these cells, they immediately get to work rushing in to anywhere he has infection or sores or anything wrong in his body. This can keep the counts low for a little while and even make them go down a bit before they come back up. So, hopefully he'll be clear by Monday and have enough of those little soldiers to let him go outside into the big wide world. :)
Tuesday, July 26, 2011
Balding at 13.
I'll never forget the day we shaved off Jacob's full head of hair. It was pretty long at the time and still very thick. It had not even started thinning or falling out at all, but they told us it would only take a week or so before it would and it had already been about 10 days or so I think. Jacob didn't want it to make a mess all over his bed and pillows so we thought it would be better to just shave it all off. Since he's a boy and has shaved his head before for football and wrestling, this wasn't much of a big deal to him and he figured it would be easier and feel good anyway. Well, it was hard for me...I tried to just think of it as another haircut, but I couldn't do it. It just made everything so real. As I started buzzing away at it and watched it fall to the floor and the patches grew around his perfectly shaped head, I knew this time, it wasn't coming back for a very long time. No matter what we tried to do, it was going to come off and it was going to stay gone...Jacob has cancer. I cried as I buzzed away his hair, but tried to be quiet because I just didn't want him to know I was crying. I cried so much that month. I know Jacob was getting tired of seeing me cry. He is so strong, so confident, so brave and well, I'm just not all those things...but he is teaching me alot.
We didn't take pictures that day, probably because Dad was the one who could have taken them and probably looking at the scene of me crying as I buzzed away his hair wasn't a scene that he or Jacob wanted to remember.
So, the pictures I will share of this memory are these... It turns out that a whole bunch of his friends shaved their heads for him to show their support. I was absolutely awestruck at the love these kids have for him.
When it finally did start falling out, this is what it did. The hair came out in little patches and the patches just grew bigger. The back of his head went bald first because it was rubbing against his pillow. He found that he could just grab some with his fingertips and it would come out without hurting at all. So, he tried sticking some medical tape to his head and ripping it off. That worked and it came out in strips! He asked me to help and by now I wasn't such a big crybaby...we laughed and laughed as we made stripes all over his head with the tape. Where's the ducktape when you need it?
We didn't take pictures that day, probably because Dad was the one who could have taken them and probably looking at the scene of me crying as I buzzed away his hair wasn't a scene that he or Jacob wanted to remember.
So, the pictures I will share of this memory are these... It turns out that a whole bunch of his friends shaved their heads for him to show their support. I was absolutely awestruck at the love these kids have for him.
This is Aubrey...yes, "Aubrey" SHE is a girl and she is Jacob's cousin in California! So, she shaved her head completely bald and donated her hair to Locks of Love in honor of Jacob. Aubrey is 13 years old, but she was just 12 when this picture was taken. She has the same birthday as Jacob - 1 year younger. She was Jacob's first birthday present! She looks a lot like her brothers with her head shaved. What is so brave about this girl is that she doesn't go to the same school with Jacob where a whole bunch of other kids did this and everyone knew why they were doing it. She was the only girl in her school to do it and it had to be a really big deal! I love you Aubrey!!!
See that kid on the right with the patch of hair growing out of the side of his head? That is Tyler Owen. I guess he didn't think it would be wierd enough to just shave his head because he's had it shaved before too. He left a funky little patch on the side in the shape of two letters... J.W.
This is Chase Shutt. He had another way to make that haircut truly honor Jacob so everyone would know why he was bald. I think you can see the letters of Jacob's name shaved into the back of his head! Thank you Chase!
And this is another friend, Gavin. He did an awesome job getting that head as smooth as a true chemo kid! He must have used a razor to get it that close! ...lookin' good :)
Joey also buzzed his head and so did Dad. Josh's head is still shaved. He keeps it bald as he can whenever it starts to grow a bit, he just shaves it off again. I think he plans to keep that up until Jacob's grows back in.
Finally, Jericho just had to shave his too the first time he saw Jacob after his hair came out. He hadn't seen him in over a month and on Mother's day, the whole family finally got to come and see him. Jericho went straight home after that and asked Daddy to cut his hair "just like Jacob's". Daddy didn't want him to be totally bald so he just buzzed it down to about 1/4 inch. Jericho looked in the mirror and felt his head with his little hands and said, "nooooo, I want it just like Jacob's! It's not like Jacob's"!
Eventually, it all came out and he was officially bald at the ripe old age of 13.
Pictures...to tell more of the story.
We have taken a lot of pictures throughout Jacob's battle and there are more of them at home. Eventually, I hope to have them all posted here on his blog. I'll start by just picking some and sharing some of the story. I can't promise that they will be in order since they are not all in one place so I'll try to add a date from when they were taken.
This one was taken on April 8th, the day Jacob was diagnosed. He's got a little oxygen monitor on his finger and he's actually receiving his first unit of blood through a peripheral IV. Dad took this picture with his phone and I'm so grateful that he did. It shows so much...he really didn't look that sick, did he? It's crazy for me to look at this and think about the war that was going on inside his body...trying to kill him.
And this one was taken the very next day. From these two pictures, you can understand why Jacob said, "they made me sick!" He felt sicker after coming to the hospital than he did going in...and he's right. The crazy thing about cancer is that they have to make you sicker in order to get you better...it just doesn't make sense. So, in this picture you can see his new "equipment" installed into his chest. This was right after his first surgery when they placed his central "broviac" line, did his first bone marrow aspirate and lumbar pucture. His first dose of chemotherapy went directly into his spinal fluid. The whole thing made him very sick, very fast and he woke up with a horrible headache that lasted for the whole month. Initially, it was a spinal headache caused from the LP and probably an imbalance of his spinal fluid. He had to lay down flat on his back as much as possible for the first week after that. He had four more LP's that round, so he never really got a chance to get better and the headaches were almost unbearable for him.
Waiting for counts...waiting for answers...waiting to get better
Today is 21 days of round three. It's too early to start watching Jacob's counts every morning, hoping that his white blood cells are going to come back, but I just can't help it. I know it will be at least another week before his body starts making the little ANC blood cells that will pull him out of this pit that he's in and allow him to go outside his tiny little room. He's been confined in this room now for two whole weeks, but last month his counts stayed at zero for 21 days. They say that it takes a little longer with each round of chemo for them to recover because the bone marrow gets "tired". So, I'm trying so hard not to think about it and just concentrate on getting him through each day, keeping him occupied and comfortable and praying that he doesn't get sick.
Right now, my biggest fear is for his eyes and the pressure that he has in his head. They did an LP for him on Saturday and drained off some of his spinal fluid which helped his headaches for a day, but they came back on sunday. The headaches are better again now, but his vision has not improved. I was really hopeful that as the headaches got better, it would mean that the pressure in there is less and by relieving the pressure, his vision would improve. I'm so scared for his eyes and I hope that anyone reading this will please pray specifically for his eyes to recover from all of this and for his vision to be restored.
Dr. Barnette just left a few minutes ago after talking to me for a while about what he proposes that we do. He decided to take Jacob off of the Septra medication because there is a slight chance that it is contributing to the intra-cranial pressure. (It is one of the rare side affects of Septra) He is changing the medication to a new one called Peptamidine which essentially does the same thing as Septra. The really cool thing about Peptamidine is that he will only have to take it once per month to have the same protection. These antibiotics protect Jacob from a specific type of pnumonia that he is very susceptible to because of his chemotherapy. When his counts are low like they are now, he is susceptable to basically everything, but there are a few bugs that they know to be super common with this treatment so they treat for those bugs "Prophylactically" (haha...there's that big word again). Jacob will be really glad to not have to take septra anymore because that pill is HUGE! It gets stuck in his throat every time he takes it, even when I cut it in half for him.
Right now, my biggest fear is for his eyes and the pressure that he has in his head. They did an LP for him on Saturday and drained off some of his spinal fluid which helped his headaches for a day, but they came back on sunday. The headaches are better again now, but his vision has not improved. I was really hopeful that as the headaches got better, it would mean that the pressure in there is less and by relieving the pressure, his vision would improve. I'm so scared for his eyes and I hope that anyone reading this will please pray specifically for his eyes to recover from all of this and for his vision to be restored.
Dr. Barnette just left a few minutes ago after talking to me for a while about what he proposes that we do. He decided to take Jacob off of the Septra medication because there is a slight chance that it is contributing to the intra-cranial pressure. (It is one of the rare side affects of Septra) He is changing the medication to a new one called Peptamidine which essentially does the same thing as Septra. The really cool thing about Peptamidine is that he will only have to take it once per month to have the same protection. These antibiotics protect Jacob from a specific type of pnumonia that he is very susceptible to because of his chemotherapy. When his counts are low like they are now, he is susceptable to basically everything, but there are a few bugs that they know to be super common with this treatment so they treat for those bugs "Prophylactically" (haha...there's that big word again). Jacob will be really glad to not have to take septra anymore because that pill is HUGE! It gets stuck in his throat every time he takes it, even when I cut it in half for him.
Monday, July 25, 2011
Better Days...
Jacob had a better day today. Not much to report. He started his new medication called Topomax (if you have migraines or ever been treated for seizures, maybe you know this one) They chose it because it is supposed to be able to relieve "inter-cranial pressure". Jacob's pressure seems to be caused by an excess of spinal fluid and it might be the reason for his headaches and swollen optic nerves. I'm really hopeful for this medicine to work. He had relief from his headaches for about a day after the LP since they drained off some of the excess spinal fluid, but this afternoon it seems they have returned again...bummer! So, I'm really hoping that this new medicine will make a difference and begin to solve the problem.
Since that's all the news for today, I thought I'd share some of the good stuff we got to do last time he was home from the hospital and post some pictures. Jacob was home from June 21 to July 5, two whole weeks this time! We tried to do as much fun stuff as possible with him during that time although for the first week, we were still having to move some things and clean up at the old house. That was so hard to have to be hauling stuff off for the dump and the thrift store instead of being able to spend time with him. It was such a relief when the job was finally done and we could just enjoy some time as a family together.
One of Jacob's best friends is Tom. His family has a "cabin" in Midway that they share for family vacations with the rest of their family members. They have been trying to get us to be able to spend a weekend with them for a long time and ever since Jacob was diagnosed we have been hoping that we could make it happen since he has been there with Toms family before and it is one of his favorite places to be in Utah. Since Jacob was in the hospital a little longer than expected last round, the timing didn't quite work as we had hoped, but we did get to go up for three days and 2 nights. It was amazing and just being there made me so happy. Having all of our family together and just being able to relax away from the chaos of moving and the stress of hospital life was so healing for all of us. Jacob got to spend those days with one of his best friends, go fishing and even go shooting with his Dad. We made him some of his favorite meals and Linda taught me how to make buttermilk syrup for our french toast breakfast....yum!
POST PICTURES HERE - that reminder is for me..haha. I have a whole bunch of great pics from that weekend, but they are all saved on my hard drive at home. Sorry for the wait!
On the Sunday before the 4th of July, we had a truly wonderful day. Jacob had been to the clinic on the Thursday before and we found out that his blood counts were almost completely normal! He was just on the low side of normal for everything, but better than they had ever been since the beginning of his battle with leukemia. It was so nice to be able to relax a bit and let him just enjoy a few things. One thing we were told when he was diagnosed is that he probably wouldn't be able to go to church or school until he was through this. He has had the sacrament brought to him at the hospital and at home every Sunday but we miss having him with us at church. On that Sunday, we decided it would be safe for him to go. He actually got to pass the sacrament with his quorum of young men and he was sustained and set apart for his new priesthood status of a Teacher. Everyone at church was so glad to see him and it was such a treat for us to "show off" our strong young man and let everyone see how the Lord is working in his life and healing him. We just stayed for sacrament and then went home though. We didn't want to overdo it.
After church we packed a little picnic and headed up to Park City for the afternoon. We set out some blankets and had a wonderful time just hanging out together. Noelle & Ryan brought a Frisbee and a volleyball. We also played "the hand slappin' game" and had an arm wrestling match. We were surprised to find out that Jacob can still take down everyone in the family -including me- except for his Dad and Ryan! I really did try to beat him and there was no way. Noelle tried with two hands and didn't have a chance! This time, I've got a few fun pictures to share...
She wanted a re-match...
....and then decided to cheat with two hands just to make the match more even. -she still lost.
Joey challenged mom and Jericho helped by making my muscles look bigger. I have to say, that kid put up a fight...he is pretty unbelievably strong for 9 years old!
After quite the battle, I took him down... :) (I think there's a scene like this in our favorite TV show, Malcolm in the Middle - the mom tells the boys that they can have their way if they can beat her in an arm wrestle and she beats them all..haha - I guess you're out of luck still, Joey) ...but not for long!
Joshua was fun, just look at that face. He wants to beat me soooo bad!
We decided it wasn't fair cuz Joshua is left handed, so we reversed the match and I tried him left handed.
Noelle and I just had to give it a try...Just look at Jacob's smile back there in the background, he got such a kick out of this.
Jacob and Jericho are just laughing their heads off watching this match... So are Noelle and I.
Well, since all the other boys had their chance. Jacob had to give me a go. I thought I might have a chance considering the kid's got cancer right??? Now way, he still took me down in no time flat! ...and I was trying, I promise.
I just had to add this one of Noelle and Ryan. Did you really think you had a chance Noelle? She's got both hands up there, ready to take him. Just look at the confidence in her face...haha.
We just thought it would be fun to get this shot. Look at all those feet! This gives you an idea of the battles I have had about putting shoes away. The shoes in our family take over the house...watch your step!
This one is really worth enlarging on your screen. I think if you click or double click it will get bigger. The expressions on everyone's face is just priceless here.
And finally... Jacob and Jericho. Having a brotherly moment together.
Since that's all the news for today, I thought I'd share some of the good stuff we got to do last time he was home from the hospital and post some pictures. Jacob was home from June 21 to July 5, two whole weeks this time! We tried to do as much fun stuff as possible with him during that time although for the first week, we were still having to move some things and clean up at the old house. That was so hard to have to be hauling stuff off for the dump and the thrift store instead of being able to spend time with him. It was such a relief when the job was finally done and we could just enjoy some time as a family together.
One of Jacob's best friends is Tom. His family has a "cabin" in Midway that they share for family vacations with the rest of their family members. They have been trying to get us to be able to spend a weekend with them for a long time and ever since Jacob was diagnosed we have been hoping that we could make it happen since he has been there with Toms family before and it is one of his favorite places to be in Utah. Since Jacob was in the hospital a little longer than expected last round, the timing didn't quite work as we had hoped, but we did get to go up for three days and 2 nights. It was amazing and just being there made me so happy. Having all of our family together and just being able to relax away from the chaos of moving and the stress of hospital life was so healing for all of us. Jacob got to spend those days with one of his best friends, go fishing and even go shooting with his Dad. We made him some of his favorite meals and Linda taught me how to make buttermilk syrup for our french toast breakfast....yum!
POST PICTURES HERE - that reminder is for me..haha. I have a whole bunch of great pics from that weekend, but they are all saved on my hard drive at home. Sorry for the wait!
On the Sunday before the 4th of July, we had a truly wonderful day. Jacob had been to the clinic on the Thursday before and we found out that his blood counts were almost completely normal! He was just on the low side of normal for everything, but better than they had ever been since the beginning of his battle with leukemia. It was so nice to be able to relax a bit and let him just enjoy a few things. One thing we were told when he was diagnosed is that he probably wouldn't be able to go to church or school until he was through this. He has had the sacrament brought to him at the hospital and at home every Sunday but we miss having him with us at church. On that Sunday, we decided it would be safe for him to go. He actually got to pass the sacrament with his quorum of young men and he was sustained and set apart for his new priesthood status of a Teacher. Everyone at church was so glad to see him and it was such a treat for us to "show off" our strong young man and let everyone see how the Lord is working in his life and healing him. We just stayed for sacrament and then went home though. We didn't want to overdo it.
After church we packed a little picnic and headed up to Park City for the afternoon. We set out some blankets and had a wonderful time just hanging out together. Noelle & Ryan brought a Frisbee and a volleyball. We also played "the hand slappin' game" and had an arm wrestling match. We were surprised to find out that Jacob can still take down everyone in the family -including me- except for his Dad and Ryan! I really did try to beat him and there was no way. Noelle tried with two hands and didn't have a chance! This time, I've got a few fun pictures to share...
First, he took down Noelle...
...I still beat him! Yesssss!
We just thought it would be fun to get this shot. Look at all those feet! This gives you an idea of the battles I have had about putting shoes away. The shoes in our family take over the house...watch your step!
This one is really worth enlarging on your screen. I think if you click or double click it will get bigger. The expressions on everyone's face is just priceless here. 
Saturday, July 23, 2011
Total turnaround
To look at him now, you wouldn't believe all that he went through yesterday. He just never ceases to amaze me. As I said when all this began - and all his life, he's truly the toughest kid I know. Yesterday morning, the nurse kept prepping me that he would likely be headed to the PICU. Nope, he didn't want to go there. Didn't want to pack up & re-set up his PS-3 and didn't want to lose his room with the HDTV! So, we stayed upstairs. Good job Jacob!
He is much better tonight. The morning started out busy, but the rest of the day was a breeze and when I got back from Jericho's birthday party, he was sitting up in bed with his table parked in front of him and the big bright overhead light ON! (He never lets anyone turn on that one. It lights up like an operating room and he's been really sensitive to bright lights) Well, he needed good lighting to work on his 1966 Mustang model with John. They had parts all over the place and they were watching "Top Gear". ...boys and their toys. John is really good at keeping Jacob busy and occupied. Every time I come when they are up here together, Jacob is up and doing something...even if it's just playing "Call of Duty", he's engaged in something...keeping his mind off all that he's going through.
That's pretty much all he did for the rest of the day. He worked on his car and watched television shows about cars.
About the morning... well, that was a different story. He was sleeping so good this morning and he actually got a pretty good night's sleep last night. I got up and tried bracing myself for the days events. I wasn't really over the anxiety from the day before so I was still emotional. (I'm really a sissy by the way) When I talked to the nurse about Jacob's night and the things that were worrying me, I started crying again...dang it!-I hate when that happens. Jacob was scheduled for an LP (lumbar puncture/back poke) at 12:00. I just wasn't comfortable letting them put Jacob to sleep for the procedure, but I knew they had to do it. Dr. Wright and Dr. Abraham came to talk to me about the procedure. She explained that they didn't want to put him under anesthesia either and proposed that we give him some medicine that would relax him and make him forget all about it. After my usual list of questions (I always ask a lot of questions...drives Jacob crazy), I consented for them to do it. Well, they were wrong about forgetting all about it and being comfortable with the relaxing drug. He was awake all the way through it and remembers every detail. Very painful and very scary for him.
He went through the procedure just fine and I got to watch the whole thing as they checked the pressure in his spinal fluid, drained some of it to send to the lab and then took some more to relieve pressure. I'm really getting an education around here.
The results of the LP showed no leukemia cells and no bacteria. The only thing they did find is that the pressure was too high and that could be the cause of his headaches and trouble with his eyes. Normal pressure is around 20-22. His was 37. Taking some of the pressure off, did what they had hoped and his headaches have been much better this afternoon.
He is much better tonight. The morning started out busy, but the rest of the day was a breeze and when I got back from Jericho's birthday party, he was sitting up in bed with his table parked in front of him and the big bright overhead light ON! (He never lets anyone turn on that one. It lights up like an operating room and he's been really sensitive to bright lights) Well, he needed good lighting to work on his 1966 Mustang model with John. They had parts all over the place and they were watching "Top Gear". ...boys and their toys. John is really good at keeping Jacob busy and occupied. Every time I come when they are up here together, Jacob is up and doing something...even if it's just playing "Call of Duty", he's engaged in something...keeping his mind off all that he's going through.
That's pretty much all he did for the rest of the day. He worked on his car and watched television shows about cars.
About the morning... well, that was a different story. He was sleeping so good this morning and he actually got a pretty good night's sleep last night. I got up and tried bracing myself for the days events. I wasn't really over the anxiety from the day before so I was still emotional. (I'm really a sissy by the way) When I talked to the nurse about Jacob's night and the things that were worrying me, I started crying again...dang it!-I hate when that happens. Jacob was scheduled for an LP (lumbar puncture/back poke) at 12:00. I just wasn't comfortable letting them put Jacob to sleep for the procedure, but I knew they had to do it. Dr. Wright and Dr. Abraham came to talk to me about the procedure. She explained that they didn't want to put him under anesthesia either and proposed that we give him some medicine that would relax him and make him forget all about it. After my usual list of questions (I always ask a lot of questions...drives Jacob crazy), I consented for them to do it. Well, they were wrong about forgetting all about it and being comfortable with the relaxing drug. He was awake all the way through it and remembers every detail. Very painful and very scary for him.
He went through the procedure just fine and I got to watch the whole thing as they checked the pressure in his spinal fluid, drained some of it to send to the lab and then took some more to relieve pressure. I'm really getting an education around here.
The results of the LP showed no leukemia cells and no bacteria. The only thing they did find is that the pressure was too high and that could be the cause of his headaches and trouble with his eyes. Normal pressure is around 20-22. His was 37. Taking some of the pressure off, did what they had hoped and his headaches have been much better this afternoon.
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