Saturday, August 27, 2011

Miracles do happen and prayers are answered.

It's hard to believe that transplant day has already come and gone!  All this time, since the first week when we learned that Jacob's cancer treatment would require a bone marrow transplant, we have been preparing for yesterday. It seemed like such a far off thing, something way down the road, in the distance that we would look forward to. All his chemo all his treatments were to prepare him for the transplant and believe it or not, it feels like that all went so fast.  In the midst of it, it really didn't feel fast, but looking back, it feels like a whirlwind...maybe more like a tornado. 

I know everyone is wondering how the boys are doing and how the transplant went.  I'm sorry I haven't posted an update sooner, but well, it's been a little busy as you might guess.  Thankfully, the hospital let Jericho stay overnight his first night after the donation.  It made things so much easier and so nice to have the boys together for the first day. But needless to say, I haven't taken the time to sit down and write.  Jericho just woke up from a 2 hour nap! And, Jacob slept too! I should have been sleeping with them, but I don't even know where the time went.  Typical...some things never change.

There is sooo much I want to say, so much to tell, but I better start by saying that the transplant went perfectly and both boys are doing great! I am overwhelmed with the love that God has for my boys and how he has taken care of them and answered all of our prayers...and yours pertaining to this transplant.

Before I tell the story of how the day went, I really want to give a little background and share with you one of the many miracles and how God has answered our prayers so beautifully.  With Jacob's diagnosis back in April, we had to wait a few days to find out the subtype of his Leukemia.  This would determine his treatment plan and whether he would need a bone marrow transplant or not need one or whether it would be optional.  Somehow, I just knew we were headed for transplant even before I understood the different subtypes and before we were told ours. Then, we waited while the boys were tested to see whether one of our other kids would be a match for Jacob and learned that if we didn't have a sibling match, they would search the worldwide directory of registered bone marrow donors to find a "close enough" match in a stranger. Somehow then, we also had a strong feeling that Jericho would be the match. Still, when we got the news and Dr. Barnette told us he was perfect, it was the greatest news of our lives and we were so thankful. Our little "caboose baby" was to save Jacob's life. As crazy as some may think, after 5 kids, we always knew we were going to want one more.  We both hoped for a little girl and we were sure that's what we would get. I sometimes wonder if we had known he would be another boy, if we would have been so anxious. We didn't really think about that possibility until the ultrasound tech told us the news. We were stunned.  It only took a few minutes though and we were thrilled to have boy number 5 on the way.  Little did we know, that boy would be a savior and had he been a girl, well it can complicate the transplant even though it can and has been done...just easier when both donor and recipient are the same gender.  Ever since we brought little Jericho home, we have looked at him in wonder at how much he looks and acts like's unreal how much they are alike - and I can almost say no suprise that they "match".  Now, after yesterday, they will "match" even more in the most miraculous and unbelievable ways.

With all this just falling in to place and seeing a glimpse of God's plan for our boys, we still worried so much about the procedure. And, we worried about whether they would be able to collect enough marrow from little Jericho for his big 14 year old brother.   Knowing that it was the only option for Jacob and his best chance of survival, that part was easy.  The hard part was knowing that we would have to subject our little Jericho to something that would be painful to say the very least.  Then, we were asked to participate in a "Clinical Study".  Allowing your kid with Cancer to partake in a study that is researching cures for their type of cancer isn't so hard to do - especially if the study has been established for a while and is looking very promising and it's highly recommended by your doctor etc. etc. etc.  On the other hand, allowing your perfeclty healthy little three year old to participate in a study that isn't going to do him any good for himself individually is a tough thing to do.  Especially when you find out the study is very new.  Here's the study:
Children's Oncology Group ASCT0631D:
A Comparison of Acute and Long-Term Toxicities in Bone Marrow Donors with and without
G-CSF Treatment Prior to Harvest: A Companion Study to ASCTO631
     What the.... you mean they want to do a study on Jericho? The donor? This isn't about Jacob? What does all this mean???
     Well, it turns out they are studying a new procedure in how they harvest bone marrow from donors.  Let me explain...beginning with the standard way they "harvest" bone marrow. 
     The patient is sedated and asleep during the procedure and they insert a long needle through the back of the pelvis on both sides, just above the bum. They make a whole bunch of pokes and suction out as much marrow as the patient's size and weight will safely allow.  The marrow is liquid and it's almost all stem cells.  They "wash" it and filter it to be sure it is clean and to get out any possible little particles of bone that could have been collected with it and then it's ready for the recipient. Yesterday, I learned that they also add a little bit of fluid to the mix before it's given.   
     Another way to collect stem cells is to give the donor a drug called G-CSF (Filgrastim) or "Neupogen" before they donate for about 5 days.  G-CSF helps to grow white blood cells and it can increase the number of stem cells in the blood and bone marrow.  Nowadays, most adults who donate stem cells receive G-CSF and then they can donate right from an IV in their arm rather than having to be sedated and poked to get the cells.  The Neupogen grows so many extra cells that they get circulated into the bloodstream and can be collected from a vein instead of in the bone. 
     The new way that the Children's Oncology Group is studying is to give this drug to children and then collect from the bone anyway because there would be a huge concentration of cells in the marrow when Neupogen is used. This method offers benefits to the recipient, but the risk to the donor isn't really that is why they wanted to study Jericho if he got this method. The biggest benefit to Jacob is that he would get a much greater concentration of cells from Jericho and they know from past experience that greater numbers of cells means faster engraftment, faster recovery and a better survival rates.  Well, that sold me...but not without a lot of worry.  Josh was not convinced at all and was not willing to subject Jericho to anything other than the normal, proven methods that we knew were very safe for him. The doctors reassured us along with Jericho's pediatrician, nurses and lots of other people that neupogen is very safe and they use it all the time.  (Most of the other families that I know from the hospital with kids fighting cancer have given their kids lots of neupogen to help them recover counts after chemo treatments) ...everyone reassured us that it would be safe, but we were still sceptical - even though we felt it would be good for Jacob and we would do anything to save him...and, we know Jericho would want to do anything to help him too.  Still, the decision was ours and it was so tough. 
     The way the study works is that if you decide to do it, your case goes to the computer to be "randomly selected" whether your donor will receive the G-CSF Neupogen or not. They need to study both cases with and without the drug and you don't get to choose which way your case goes. We were torn.
     Fervently, we prayed about this decision. We asked for guidance, we asked for wisdom, we asked for answers.  Finally, one day in my car, on the way home from seeing Jericho's pediatrician after a long conversation with him about the study, I cried out to God with tears streaming down my face and Jericho in the back saying to me, "Mommy, you cry too much,"  I received my answer and I realized the beautiful thing about the study.  I could choose to do it and I could put the whole thing in God's hands and let go. Did I trust Him to be able to "tell the computer" which side of the study was for us?  I knew that if I could trust God enough to let Him make the decision, He would do what is best for both of our boys.  If I chose not to do the study, then I would be taking all the power away and making the decision on my own as to what I was comfortable with and which way would be best. Well, I trust God more than I trust myself so I decided that I wanted to leave it up to him...and finally, I was filled with peace.  After a few days of talking it over with Josh and then a whole day spent at the clinic discussing every angle of the decision with multiple doctors as well as a "neutral party" consultant to help us, we finally consented to go forward and do the study. 
    A few days later, when the computer "randomized" our case and we were informed that we were going to have the standard transplant and Jericho would not have to get neupogen shots, I have to admit that I was a little disappointed and confused.  Josh and I were both totally convinced that if we agreed to the study, Jericho would be chosen to do the shots...that's why it was so hard for us to agree to.  I had also convinced myself that the shots would be safe and better for Jacob.  I was so worried that they wouldn't be able to take enough marrow from Jericho to ensure the best possible outcome for Jacob.  It took me a little more time to come to peace with the decision God made, but I reminded myself that I had promised to trust Him and He promised me that He loved both of my boys and knew what was the best and safest choice for both of them. I accepted the decision because it was already made, but I still worried so much that we might not get enough.  I tried to be sure Jericho got healthy things to eat and got his vitamins every day and I stressed about him not getting enough sleep or eating any junk food.  This was a huge lesson in trust for me...and I really thought that I already trusted god "with all my heart". I try to live by the scripture that tells me to "Trust the Lord with all your heart and lean not on thy own understanding, in all your ways acknowledge him and He will direct your path." ...and yet, I still l
let those little fleeting worries consume my thoughts at times.
     Last weekend, I was home with the kids on Sunday for church and went back to sleep at the hospital with Jacob Sunday night.  I stayed long enough to get the kids to bed and put Jericho to sleep.  I layed in bed beside Jericho 'till he was sleeping and held him as long as I could.  As I got up to leave, I got to my knees beside him and with tears streaming down my cheeks again, I prayed.  I put my hands on his little body while I prayed. I prayed for God to strengthen him, keep him healthy and give him enough rest and all that he would need to produce the little cells that Jacob needs to survive.  Then, outloud with my hands on his back, I prayed for God to "be the neupogen" and multiply the cells in his body to produce an abundance of extra cells and ensure that there would be even more than enough to help Jacob. As I'm writing this, I realized that this was Sunday and if we had been chosen to do the G-CSF study, Jericho's neupogen shots would have started Monday morning, for 5 days before the transplant.  I never made the connection until just now.
     We got through the week and on Thursday, Josh called me to come home and go to the temple with him.  John came to stay with Jacob at the hospital and Noelle watched the boys at home.  I didn't make it in time to meet Josh and do a session together, but we both stayed in the Temple for about three hours without seeing each other, separately and indepentantly doing temple work, together.  I finally found Josh in the celestial room, sitting in a chair with his head in his arms and quietly shuddering in his tears.  We stayed there together for a long time, crying together, talking and praying.  We had both put the boy's names on the Temple prayer roll and we went home to try and sleep before the big day.
     In the morning, I had to drive to Noelle's house to pick up a carseat for Jericho.  While I was gone, Josh had his moment to pray alone with Jericho like I had on the Sunday before.  He gave him a father's blessing.  Later that morning, Josh and his brother Nick gave Jacob a blessing in his hospital room as we waited for Jericho's freshly harvested bone marrow to be delivered.

    At exactly 2:30, right on schedule, Jericho's precious bag of bone marrow arrived and the transplant began.  The nurse hung the bag up on Jacob's IV pole and we all watched as it dripped down the line and into Jacob's heart to be pumped throughout his body. (sooo much more fun and way better to watch than chemo!) Jacob and Jericho snuggled in the hospital bed together while the bag drained.  It was truly one of the most awe inspiring moments I have ever witnessed. 

    In another post, I will write about all the moments and events of the day. I want the boys to remember every moment of this amazing day as they were bonded together as true "blood brothers". It was such a long day with so much to remember, but I want to finish this story first. Just remember, the whole process went right and perfect and they are both doing well today.
     This morning, the doctors came to visit and the boys were again snuggled up together in Jacob's hospital bed. They talked about what a little champion Jericho was and called him a superhero and then they told me the news that confirmed the miracle.  Dr. McMannus explained that as they prepared the little bag of marrow, they actually counted the number of cells that were in there.  She said that they calculate the number based on how many would be delivered per kilo of Jacob's body weight.  They "like" to see one million cells per kilo. They "really like" to see two million cells per kilo. Three million cells per kilo is "really exciting!" Well, our little superhero Jericho gave Jacob 3.1 million cells per Kilo of Jacob's body weight (which is 72 kilos by the way!).  That's a lot of cells...I would say a multitude of cells and even an ABUNDANCE of cells! ...Miracles can happen, prayers are answered...and I will never doubt the Lord again.

Wednesday, August 24, 2011

Wednesday August 24 - LAST DOSE OF CHEMO!!!!

Today is a day to CELEBRATE!!!! At 2:00 this afternoon, Jacob received his very last dose of Chemotherapy!  They have finished giving him all the chemo that will work to destroy his bone marrow.  Tomorrow he gets a whole day to "REST" from chemo and clear it out of his system....YAY! And with that old yucky bone marrow gone that likes to make crazy leukemia cells, he will have room to get new healthy marrow that makes only good cells!

This day is so exciting to me because it's the day that we have been looking forward to ever since we began this crazy fight four and 1/2 months ago.  From today on, everything they do for Jacob will truly be to make him better, stronger, healthier! No more making him sick to make him better....that just never made sense to me!

We know he has a bit of a road ahead of him and he will get very sick before he gets better in the near future, but 2:00 this afternoon marked the last time that they intentionally give him something they know will make him sick and hurt him. Now we can focus on just helping him clear that poison out of his system, help him through the side effects and prevent any more damage to his body while we wait for his new bone marrow to take hold in his body. 

We are praying now that little Jericho's body is making lots and lots of healthy little stem cells in his bone marrow.  We pray that he will have an ABUNDANCE of those cells to give his brother and that they will be strong and agressively grow where they need to go, straight to Jacob's bone marrow.  Then they will multiply and start producing all the kinds of blood cells his body needs to recover and just in case there's any little sneaky leukemia cells hiding out in Jacob's body, we pray for Jericho's marrow to destroy them!

First day of High School - 9th Grade 2011

How Jacob spent his day on his first day of High School 9th grade year 2011.

Monday August 22, 2011 should have been Jacob's first day as a ninth grader at Albion Middle School. Instead, he rested in his hospital room while receiving chemo for the 6th day to kill all the bone marrow in his body. 

Monday was rough for him because it was the first day that he really started feeling the pain and effects of the chemo.  On this day, the nurse installed a new pump to his IV pole that dispenses pain medicine for him whenever he pushes a button on his little remote in his bed. The pump also dispenses a "continuous" dose to him all the time just too keep him comfortable and the button is for whenever that continuous dose is not quite enough.  It took another day or so to get the dosing right (they started it out too high and he slept most of the day and got itchy all over plus a couple other side effects that I won't mention) They seem to have figured out the right dose now as he's not too sleepy and he rates his pain at a "5" (on a scale of 1 - 10) 

Tuesday, August 23, 2011

Good Days...

Jacob had some very good days starting out for transplant.  I was expecting him to be way sick right away like he was with all the other rounds of chemo that he's had.  Well, thankfully the Busulfan he got for the first four days is actually a "mild" chemo compared to some.  It's hard to believe there is such as thing as a "mild" chemo...especially since this is the one that will wipe out all his bone marrow! It's not really mild, it's just that the side effects don't show up right away...sort of a delayed reaction.  Whatever the reason, I'll take it cuz his first few days in the hospital this time were pretty good.  He ate like a champ without nausea and he showered every day and got out of bed to sit in the rocker or whatever he could do to just get up and move a little.

On friday, we had a very exciting visit from Jacob's Uncle Nick, Aunt Vanessa and their new baby girl Allie.  Nick has always been very close to Jacob and a huge part of his life.  About 8 months ago, Nick and Vanessa moved to Connecticut to be close to Vanessa's family while she finished the last of her schooling and had her baby! It was hard to see them go knowing we wouldn't get to meet little Allie as a teenie tiny newborn.  Well, they finally moved back last week and we were super excited to see them and meet little Allie.  She is so cute and sweet and well, according to Nick and Vanessa, she's way more fun now than she was when she was newborn anyway.
So cute!

Saturday was the first day that Jacob's nausea got stronger than the medicine's he takes to prevent it and he threw up.  He takes a medicine every 12 hours called Kytril that does a pretty good job of keeping him from throwing up, but the longer he's on the chemo, the more it builds in his system and then he needs something in addition to the Kytril.  He uses benadryl and phenergren for this and it works good and quickly.  The only downside is that it makes him really sleepy. Jacob is trying to keep his schedule "normal" this time as much as possible, but when ben-phen knocks him out to sleep for several hours during the day, it's harder to sleep at night.  So far, he's doing pretty good though at keeping his days and nights where they belong.

Saturday was also the last day of Busulfan and on Sunday he moved on to the stronger and high dose chemo, Cytoxin.  This one is a lot harder and we saw big changes pretty quick.  First off, he is much more nauseous and needs the ben-phen pretty much every four hours.  He also started retaining water right away and he's put on about 5 pounds in just a couple of days. Somehow this chemo makes the body hold on to water and it can actually damage his bladder. ugh! This is also one of the chemos that causes mouth sores and we saw those start by Sunday afternoon. By monday, we could almost just watch those sores grow in his mouth.  The best way I can describe what I'm seeing and what he seems to feel is to imagine drinking a cup full of boiling water and then swish it around in your mouth for a bit before you swallow it... then watch what happens to your mouth, gums, throat and even the gut. Remember though, he gets the chemo through IV in his central line, so it goes in to his blood stream.  The damage to his skin and mouth are coming from the inside out! This stuff is's so hard to accept that all this is for his good, to make him better.

Reading a book written by a little boy (Superhero)  who had a brain tumor...

My little (well, not so little) champ is still eating though, despite all the sores in his mouth he is determined to eat all that he can get down while he still can just to try and stay off TPN for as long as possible. Monday, the Dr. installed a pain medicine pump to his IV pole. This seems to be helping a little by putting him in control of when he can have the medicine.  He gets a smaller "continuous" dose going all the time and he can push a button to get more when he needs it. 6 days seems so early to start all of this, he's never been this sick this quickly. It's hard realizing that he's going to need these pain medicines for so many more days this time than he ever has before.  I hate it! ...and yet I'm grateful that they have the resources and are doing everything possible to keep him comfortable through this process.   

Too bad he wasn't this bald on Easter, that head would have made a great easter egg! Haha... (sorry jacob, you know how I love your bald head <3 )

Monday, August 22, 2011

Day BMT - minus 7 ...Let me explain.

I forget that most people reading this don't really know how a bone marrow transplant works.  I know I never had a clue about this until pretty recently.  Well, we got a crash course from the Utah Blood And Marrow Transplant Program last week during our "conference" day in clinic.

First off, they track things in days and there's some important numbered dates in the whole process.  The most important day is known as "day zero" because that's the day Jacob will receive his new bone marrow.  Every day before that is a "minus" day and every day after is a "plus" day.  Last friday was Jacob's "minus 7" day.  This friday will be day zero and his Bone Marrow Birthday!!! They make a really big deal about that birthday here and they were very clear in explaining to us that any kid who has to go through this deserves an extra birthday celebration - every year, not just this year ;o) Okay... we will be thrilled to celebrate his BMT birthday every year for a very very long time!!! ...even though we already have 6 other birthdays to celebrate with our kids every year, well what's one more - more fun!  We never really made super big deals about birthdays around our house with any of the kids, but after this, we're all gonna treasure birthdays a lot more - for everybody.

Every transplant might be a little different with some using different chemos or different levels of chemo and some need radiation too.  Jacob's schedule is to receive two different types of chemo for 8 days.  The first four days he got Busulfan and the next four he gets Cyclophosphamide.
Cyclophosphamide AKA Cytoxan

Then on day -1 he gets to "rest" from chemo as they wait for it all to clear his system and the next day he gets his transplant marrow from Jericho.  Other medicines to prevent failure are given on specific days "post transplant".  On the day of transplant, everyone (nurses, doctors, all the staff, family, friends...anyone involved) places their "bet" for which day the new marrow will "graft".  They gave me a hint and explained that most transplants graft somewhere between day 14 and 28.  That's a pretty wide range...but go ahead and place your bet :o) We'll keep ya posted.

The other question I get a lot is how it will affect Jericho to donate marrow for Jacob.  Well, thankfully for him, he will be asleep during the process.  The surgeon will puncture Jericho's hip bone in the back because that's where the greatest volume of bone marrow is found.  They will pull out only as much marrow as would be safe for Jericho through a long needle and collect it for Jacob.  They move the needle and pull out more several times until they get enough.  It sounds really bad and painful, but he will be asleep during the process and the whole thing is usually an outpatient procedure. Most kids go home the same day they donate. Also, the younger they are, they say the kids recover quicker.  He will be sore in his hips for a little while and he'll be a little tired over the weekend.  He might ache a little and he'll for sure get some special treatment and extra ice cream.  In just a few days, they expect that he will be up and running around like nothing ever happend and in a week or two, his body will completely replace all the marrow he gave.

As young as he is, Jericho understands that he is going to do something very special for Jacob.  He tells everyone that he's "Jacob's match" and he's very proud of that! I've tried to explain to him as well as I can how it's all going to work and what it's for, but who knows what he really understands.  He just knows that he has special blood that is going to make Jacob better! -and that's pretty cool if you ask me.

That's better... We're movin' on up!

We moved in to the "Master Suite" on Friday when our neighbor moved out.  Here's our new welcome sign from Tommy the Tech.  Personally, I just love this welcome better than "welcome Jacob" that we get each month..haha.  Tommy likes hanging out with Jacob because he watches a lot of guy stuff on TV.  We like Tommy.
Moving in to the bigger room is a big upgrade for us.  The room is just a little bigger than all the other rooms on the ICS unit, but the best part for me is the bed I get!  Just to put things in perspective, here's a picture of my old bed.  Believe it or not, these little chairs pull out to about 6 feet long for mom or dad to sleep on.  They get longer, but they don't get any wider...and they're not very soft either.  Here's what we slept on for the first 3 month long rounds of chemo:
That the seat pulls out and the cusion under pulls out more and then that top back part of the chair folds down to make it stretch out into a three part bed.  Hmmmm....comfy? You'd be suprised, when you're this tired - this thing is pretty darn good.

I had to go find an empty room to get this picture and turns out it was 4407. Well, since that's the first room we had here on the ICS floor and the one we were diagnosed in, it brought back a wave of memories and I had to get a picture of the room. Don't really know why, but I just wanted it... all these rooms are seriously, exactly the same (with the exception of my new master suite) - but the rest are all the same.  Somehow, for me, there's something unique about this's hard to explain...nothing to compare that feeling of going back in to that room.  I just had to take the picture.

Now check out this room: It's really not that much different, but that couch in the back of the room makes ALL the difference!

Ya, that's my two boys sound asleep.  They snuggled together in Jacob's bed for a while, but Jericho didn't fall asleep 'till he was over on the couch.  Here's how that couch makes into a bed ( I know, this is boring stuff and you wanna hear about Jacob right? ...well this post is probly more for me & Jacob later on than for anyone else reading. I don't know why it matters to me, -just bear with me for a minute, I'll get more interesting soon. :)
Waaay better than that little green chair huh!!! Ya, I'm sleeping a lot better on this bed here at the hospital. -but just wait till I get home and post pictures of our new KING SIZE bed waiting for me in my bedroom.  YUP! We got a new bed for me and Josh.  We have been looking on KSL for weeks, basically ever since we moved in to the new duplex.  I found one that was in Cottonwood Heights and called on it just because it was the closest one and would be the easiest to transport.  Even though it was priced a little higher than some of the other ones and there wasn't actually a picture of the bed.  Well, we didn't get a chance to go look at it with all the business of getting ready for the transplant and when the guy called me back, I told him we wouldn't be able to do it this month and he could let it go to someone else.  I briefly told him why... Well, he called back about 15 minutes later after talking to his wife about us and insisted that he wanted to GIVE us the bed! I couldn't believe it...this was a total stranger who only heard a very short explanation of what we were going through.  After the yard sale, I had planned to find an affordable kingsize for us with some of the profit and now here he was with another donation that would bring us more comfort than he could ever realize.  Sometimes, God uses ordinary people to be his angels and this was one of those times. I really don't know how to thank him, except to thank God for His angels and the people in this world who live by the spirit.   It's seriously the best bed I have EVER slept on! (only had one night on it, but that's enough for me to know) I can't wait till we get home again...then I'll really be able to catch up on all the lost sleep.

Wednesday, August 17, 2011

Welcome Back

I just love how they "welcome" us each time we come back for chemo.  The first time we were admitted, on diagnosis day, before we knew what we were up against, I remember the feeling when we saw this little note on the white closet door and thinking "how thoughtful for them to write his name on the board and welcome him".  It's not quite the same each time we come back although, it's still thoughtful. Today, I realized that everywhere I looked, on our way in the door, on the way up the stairs, on the elevator, and of course walking through those double doors of the ICS unit, were familiar faces.  I feel like we know everyone here and they sure know us now.  Jacob said on our way in today, as we passed the security desk without any questions and were sent straight upstairs without even having to check in or register..."I don't know what I would do if we had to change hospitals now, I know this place so well and it feels like I know everybody here."  Sad, but also really great.  Primary Children's Hospital is an amazing place and a blessing.  We love this place, even though it represents the hardest thing we have ever had to do.

Time at home together...

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 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 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 :)

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.