Sunday, September 18, 2011


Little did I know what a roller coaster we were getting on last week when his counts started to show activity!  Here’s what his week looked like:
Monday: 100
Tuesday: 300!  -yay! Way excited…we thought we’d be to 500 by Thursday for sure!
Wednesday: 200 – Docs said it’s normal to go up & down for a while…not to worry.
Thursday: 200 – again?
Friday: 300 – Docs mentioned the possibility of needing a neupogen shot to get him going, but didn’t do it, said they’d wait a few more days.
Saturday: 300 – still??

And here we are on Sunday, any guesses where his ANC is today?? 600!  Yep, that’s right SIX HUNDRED!  So happy…now I really know it’s working! Now, he’s just got to hold that above 500 for 2 more days and it will be official.

Tuesday, September 13, 2011

Roller Coaster Ride

Monday, September 12, 2011
This morning came the best news ever! It’s…a true miracle, the work of heroes-a whole team of them and the answer to heartfelt prayers of a mother, father, child, siblings, family, friends and strangers.  After just 17 days of waiting, the bone marrow Jericho gave to Jacob is showing its amazing strength and ability to thrive.  It’s working.  Jacob’s ANC is 100 this morning! 
            What does this mean exactly, you may ask? Since Jacob’s cancerous bone marrow is dead (yay...I can say that now without being scared), it is unable to make any type of blood cells… red cells to carry oxygen, platelets to clot his blood and white blood cells for healing and protection. ANC is a type of white blood cell.  The doctors call these “the first line of defense”.  ANC are the little soldiers, the ones standing guard and ready to attack at the first sign of trouble.  Without them, Jacob is susceptible to anything and everything that comes his way.    With these little soldiers showing up in his lab work, well, we know they had to come from Jericho’s marrow!
            The ANC are especially exciting to us because this is the number that Docs use to decide when Jacob is safe to leave his little isolation hospital room where he has been trapped for the past 28 days and go back out into the big wide world of real life again!  When his ANC reaches 500 and is able to stay there for 3 days, they will officially declare that the bone marrow has “grafted”.  This could happen as soon as Thursday.   We have to realize that the counts can fluctuate a little for a few days so we’ll have to be patient, but now that we know the marrow is growing…enough to show up at all, we know that it’s just a matter of time.
            This morning was so happy for me and it was so exciting to tell Jacob.  He was surprised and wasn’t expecting this to happen this soon.  Also, he feels really sick right now so I don’t think he was expecting any good news for the day. He took it all in stride and overall seemed a little proud of himself about it.  I sensed a bit of relief in him knowing he’s still ‘got it’.  He always loves to be the best at everything he does and I could just imagine him thinking to himself, “Ya, I’m gonna graft sooner than most, I even fight cancer a little better than anybody else.”
            I immediately sat down and posted the best announcement on facebook, “It’s working, It’s Working! Jacob’s ANC is 100! The marrow is growing!”  I posted updates on Josh’s wall, on Jacob’s wall, on the “pray for Jacob Watson” wall and on the Cancer Mom’s facebook group.  Then, I got out my phone and texted everyone close to us.  I was so happy, so excited.  We’re almost there!
            What I didn’t realize, and neither did Jacob, is that engraftment would make him sicker before he’d get better.  While his counts are zeroed out, he gets real sick and his insides get all torn up from the chemo damage.  He has to be given IV anti-biotics, anti-viral and anti-fungal medicines just to protect him from potential infections.  Basically, they give him a chemical immune system until he grows a new one.  When that new system "wakes up" it gets straight to work.  As all the different kinds of white cells begin to grow and reproduce they do the only thing they know how to do....defend, protect and destroy!  Well, imagine the worst flu you ever had and then imagine worse than that.  This is what they say it feels like...and that's what it looked like to me.  Once those white blood cells get their job done, he will finally start feeling better. 
            The day moved on and Jacob just kept feeling worse and worse.  He woke up in the morning with a horrible headache. His face was swollen up and he thought his eyes were protruding or something because his face felt weird. He was nauseous all day and the headache only got worse, not better as the day moved on.  He was able to lay in bed and watch TV for a few hours, but just lifting his head up enough to get the remote or take a sip of water made his head hurt worse.  It was a 9 out of 10 on the pain scale for most of the day.  He fell asleep and I stepped out to the laundry room/parent kitchen to make myself a sandwich.  My friend Kelly came in just as I was getting ready to leave and we had a really good visit.  Her son Jonathan is here for transplant and they are just about 2 weeks behind our schedule, so she’s feeling a lot of the same emotions and has the same questions I did the few days before Jacob’s transplant.  It felt so good to be able to offer my support, advice and a little encouragement.  Somehow, helping another makes me feel that what I’m going through and Jacob’s ordeal is not for nothing.
            As I was talking with Kelly, every few minutes I had this heavy feeling in my heart and wanted to go check on Jacob.  I reached for my phone and realized I didn’t have it in my pocket. (he hates when I forget my phone and leave the room…and here’s why)  Finally, the feeling was too much and I told Kelly I had to go check on him.  She felt the same way about Jonathan and went to go check him too.  When I got back to Jacob's room across the hall from the laundry room, he was sitting in bed with eyes half closed looking pale and exhausted.  He had just recovered from a horrible vomiting spell. He didn’t have a bucket nearby (but somehow got it and didn’t make a mess) He had paged the nurse, and they didn’t come. He had called me and then Dad wondering where I had gone and ultimately managed the whole scary episode himself…alone.  I felt sooo bad!
            The whole day was like that, ups and downs…happy that his counts are coming up, sharing the good news with a smile and then looking at him…suffering and me fighting back the tears.  I have to cling to all the ups and stay positive every day.  We'll have him home soon...sooner than we thought we would! So much to be thankful for!

Saturday, September 10, 2011

"new normal"

Friday, September 9, 2011:

Surreal, that’s my word of the day for today.  According to the definition it means... “bizzarre, weirdly unfamiliar, distorted, or disturbing, like the experiences in a dream or the objects or experiences depicted in surrealism.”   Yep, that pretty much says what I felt today.
I thought this was getting to be routine and I was 'adjusting' to the whole idea that Jacob is fighting cancer...and then these moments come along when everything in life is just "surreal".

I try to think about what life used to be like and I can’t remember.  It feels like a dream, but I don’t know which part is the dream. The life before cancer or life now, living in ICS, fighting cancer with my son, sharing my world with other moms going through the same experience. It’s hard to explain, but ‘surreal’ is a good word.

The day started out nice. I was able to go home and sleep with the other kids for the past few nights.  Josh had been coming to the hospital to stay with Jacob for the night and then I come up when he leaves for work.  I love being home with them and sleeping in my own (new) bed, but nothing feels the same anymore, nothing feels right.  I drove through the old neighborhood the other day when I had to pick the boys up from the Petty’s house after school. The street brought back feelings and memories of our boys riding their bikes and heading to the park together. I could see Jacob walking home from school-it seems so long ago, when the three boys walked home together on that familiar Road. 
At home with the boys, I just don’t function like I used to. It’s like I have to start over every night when I am with them and think about the routine there. Listening to their days at school is overwhelming sometimes. They are all so happy to have mom with them, they all want to share something or just sit close to me every moment. I love it, but I feel myself going into overload sometimes.  They don’t understand why I look at them like I do sometimes, why I hold on a little longer when they hug me goodnight, why I cry so easily and sometimes actually get angry so easily too.  I hope this stage will pass. This “new normal” is just not normal at all.

When I got to the hospital, Jacob was awake and I got there just as Josh had to leave.  I was glad that Jacob didn’t have any alone time this morning. He had been running a fever through the night and I didn’t know what to expect.  Things can change so quickly when a fever starts.  It means his body is fighting something and we don’t usually find out for at least 24 hours what it might be.  Some infections can be life threatening, all fevers are taken very seriously in ICS.
He seemed to be doing fine.  He was sipping water, sitting up in bed and told me he felt ok.  Since he was wide awake, we decided to watch a movie together.    I had rented the movie “Stand By Me” the day before and was looking forward to watching it with him.  I thought he would like it and I loved it as a kid. It’s just one of those movies you gotta see at some point and he never has.  It was great, we laughed all the way through and found a new favorite.
The movie ended just in time for me to go to the Parent Lunch break that happens about once a month.  Kneaders was hosting the lunch and they make great sandwiches.  A lot of parent’s came, but most of them just got a sandwich and went back to their rooms.  Only about 5 of us stayed and ate in the conference room together.  As we sat down together to eat lunch, that’s when the feeling began.  We talked and visited together, me and 4 other moms.  The conversation of course revolved around each of our kids as we calmly told each other our personal horror stories…
Steven’s mom told about his Osteo-sarcoma, bone cancer.  His was in his knee and they had to amputate his lower leg and by re-attaching his foot in reverse, he can now use his heel as a joint.  He’s doing chemo this week to make sure they get all the cancer and it doesn’t come back somewhere else.
Sadie is Graham’s mom, she talked about how she knows so many people who have had cancer and we all chatted about the weird coincidences with kids and people who get cancer in clustered locations.– She said she can name 20 - not even counting the ones she has met here since little Graham was diagnosed with an extremely rare form of AML leukemia that is just in his skin.  Graham was 4 months old when he was diagnosed.  His little body has had a tough time with treatments and chemo.  He’s one of my favorite little guys up here cuz he’s been to heaven and back again.  He’s a fighter.
I was glad to get to know Samantha’s mom a little bit, but hearing her story was tough.  Samantha has Ewings Sarcoma and she had a tumor that wrapped around her spinal cord.  She collapsed one day on her way to school and had to go through surgery the day of her diagnosis to remove the tumor.  She had her vertebrae fused together so she could be stabilized and walk again, but she had to learn how to do that all over again at 6 years old. Samantha’s here for more chemo too.
John’s mom, Kelli came a little late and we invited her to come sit with us.  John goes to the same school with Jacob and they both played Brighton football although on different teams.  He got cancer in his kidney 2 ½ years ago.  They took out his kidney and he went through all the chemo to clear the cancer.  After 18 months of remission, his cancer came back in June.  Now, he’s here for a bone marrow transplant too, just three weeks behind our transplant schedule. 
As we visited and shared our stories, I found myself watching the scene-as if from outside, as a bystander.  We told our stories of our personal nightmares, any parent’s worst fear. We talked about the struggles, each of us with our different family dynamics, juggling other kids, family life, household stuff, travel to & from primaries etc. We talked about our new “skills”, how we learned to administer TPN through our kid’s central lines while they are at home, medications and their side-effects, long term and latent effects our kids will have forever, symptoms that led to their diagnosis and various types of Bone marrow transplants.  It was just conversation and we were all past the tears. We each shared some of our pain without a single tear…but we could feel it and I know that we can each see past the outer skin and see the tears inside. We were all feeling it and understood each other like no-one else can in the world, unless they have experienced this kind of pain. The tears are inside, and they never stop, they are just below the surface and there’s a part inside of each of us that just wants to scream.  We all admitted that although we look strong now and it looks like we’re doing ok, we still have those moments when we just have to cry, for reals.  For me, it usually happens when I’m alone in my car. I guess I feel safe there-or not safe, I don’t know. But, it still happens a lot.
After lunch, I went back to Jacob’s room.  He was still awake, so we watched a little TV together. He was watching Funniest Home Videos, so we had a few good laughs.  –great therapy!
Jacob got some platelets so I went out to pick up his new “bead of courage” for platelets to go on his long string of beads we have collected for all his days of treatment.
As I went down the hall I saw Bonnie and Kristi, a mom I hadn’t seen in quite a while, standing together. They were admiring the gold ribbons that I had put all over the ICS unit a few days earlier.  The last time I saw Kristi was the day before Mother’s day.  She was doing her son’s laundry getting ready to take him home and she was so glad that they would be able to be together at home on Mother’s day. Bonnie asked if I remembered Kristi.  Of course I did.  I think of her almost every day.  She was one of the first moms I met after Jacob was diagnosed. As I looked at her standing in the hall with her own box of ribbons, a flood of emotions came back to me.  All that stuff that was just under the surface came rushing out.  I reached out and gave her a hug and then found myself unable to let go.  The tears came for both of us and we cried together and hugged for a very long time.  When we let go, I told her how perfect her ribbons were and asked if I could have one to wear.  She told me where she found the little heart-shaped brads that held the ribbons together and how her fingers were sore from making them.  One nurse came over to give her a hug, and then another, and another… she held it together so well. It had to be so hard for her this first time back in ICS since she lost her precious and valiant son Tanner to AML Leukemia, the same cancer that Jacob fighting.  Tanner was nineteen.
Back in my room, I had to hide in Jacob’s bathroom for a few minutes and just let go. Seeing Kristi brought back all the emotions that came with diagnosis.  She was one of the very first moms I met at the little breakfast cart that comes around our unit each morning.  Most of the other moms I met then are ones I have kept in touch with and we saw each other on subsequent rounds.  Kristi is one that I only saw during that first traumatic round of chemo for Jacob and she represented so many things to me including my worst fear.  After a few minutes, I went to the sink and splashed water on my face for a while until the bloodshot in my eyes began to dissipate. I ran a brush through my hair and refreshed my makeup, a little new mascara and a few deep breaths and I was ready to face the day again. Just about the time I got control, a nurse knocked on my door to say Kristi was outside with her box of ribbons.  She offered to let me take a handful of them to share with the rest of my family and give some to the other moms here.  This time, I was able to go out with a big smile and I just had to apologize, feeling so silly and humbled by my little meltdown. 
It still hits me sometimes, more and more often when I look at Jacob, think about the boy that he is inside and compare to the boy he appears to be now. This afternoon, after I thought I had pulled myself together and thought I just wanted to sit by Jacob, maybe watch a movie together, gather my thoughts and write some of these feelings down, Jacob again reminded me of the battle he is fighting inside.  He woke from an afternoon nap saying he was freezing in here.  I went to him to “tuck him in” a little or rub his legs to warm him up and he began to shiver.  The shivering escalated quickly until his back began to hurt.  He knew what was happening, but he couldn’t stop it.  The shivering was making his muscles contract and spasm.  His neck and back hurt so bad and locked up in pain.  Shivering turned to shaking and I got him some hot packs to hold under his blanket. It works like a little heater under the covers.  That wasn’t enough.  He wanted three hot-packs under his shirt, one on the back of his neck and one over his ear.  I also put one between his feet and put socks on him.  …still not enough.  I asked the nurse for a warm blanket.  These are the blankets they actually keep in a warm oven and it’s hot when they lay it on him. We put that warm blanket underneath his blanket, then covered him up with his own blanket-and then I laid down beside him to hold the warm pack over his ear and he wanted my arm across his chest.  Still, he shook and shook.  The whole bed shook with him and he groaned and cried out from the pain and frustration of not being able to control his own body.  There beside him, I held him as he shook for close to an hour.  Every 10 minutes we waited for the little light to blink on his pain medicine dispenser so he could push the button for another dose.  I prayed out loud for him and cried quietly until the shaking stopped and he finally slept. 
When he woke up about 30 minutes later, he was a little swollen looking and a little delirious. We checked his temperature and just as I suspected, he had spiked a fever: 39.7 c – or 103.5 f.  He had stopped shaking and now he was hot.  We took off the extra blankets and checked his blood pressure and other vitals. Blood pressure was a little on the low side, but nurse Dave reassured me that he was just fine and gave him some Tylenol.  They’ve seen this before, they see it every day. He’s just another patient and they think they know just what he needs.
The Doctors, the nurses, the techs and all the professionals that work with him now and see him every day…they don’t know him at all. There is only one nurse who actually has the advantage of knowing the real Jacob.  He was Jacob’s Jiu-Jitsu trainer long before diagnosis.  He’s here with Jacob today and there’s always a little different attitude when Manny’s on duty.  Jacob trusts him and seems to know that Manny doesn’t label him as just another kid here with cancer…not that anyone here does, but sometimes it can really feel that way. Manny has seen Jacob on the mat, wrestling kids and rollin’ with the punches. He knows the athlete, he knows how strong Jacob is, the endurance and the attitude he’s got.
I also know the real Jacob. I know what a fighter he is, how bad he has to be the best at everything in life, how hard he works for the things he wants and how much he loves to have a good time.  It’s so hard to see him like this. This…is not Jacob.  He’ll be better, he’ll be back.  I can hardly wait.  …and then I think of Kristi, Connie, Sadie, Kelly, Karen, Rachel, Lizzy, Autumn, Chelsea, Crystal, …geeze, I could fill the page with all of them.  The bond I feel is indescribable and surreal. The connection we have is tragic. 
Am I really here? Is this really my reality? Couldn’t it all still be a dream? Somebody wake me up! I don’t want to be one of this group.  I want to go back to the way things used to be…but I can’t remember what that was now, so I can’t ever go back now. There’s no turning back, we’re in this thing…for life. I’ll never be the same, we’ll never be the same. But, I will still hang on to the hope that someday, Jacob will be his old self, a new self, a stronger self.
One of the mom’s I know recently started a blog for us where we can share events and invite new parents to give them the connections they need to get through this.  A few days ago, Chelsea posted a poem for us:
I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran, bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day.
We know the names of up to 20 different drugs,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep.
Make up, hair-styling, skirts are words of the past.
We have become addicted to texting,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night,
We know we can count on someone to be up.
Then for one of us, the world stops.
She has to walk away, broken.
This job is over.
The job is over, but the fight is on.
Remember, I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each other’s rock, each other’s punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win, sometimes we lose,
But never are we defeated.
We are not nurses
We are not doctors,
We are cancer moms…

Sunday, September 4, 2011

Our biggest little hero!

 Jericho had to be up early on transplant day.  We had to be at the hospital by 6:00 am.  He was asleep when we got in the car and slept the whole ride and he only woke up for a minute when I put him in the wagon to ride into the hospital.  Of course, he had on his Spiderman Jammies! He was so excited to be a Superhero that day. He was a little sad when he had to change out of his Spiderman Jammies and into the hospital gown, but somehow we convinced him that those new hospital Jammies were way cool too. And he got new stickers as soon as he was dressed.  His favorite was the Spiderman sticker of course.
The wagon stayed with us for the whole day.  Mommy made a bed in it and Jericho rode around the hospital as we went from one place to another until we got up to ICS where Jacob waited for his new marrow.  Jericho gets lots of rides in the wagon when he comes to see Jacob.
We waited in a little playroom for a bit as the different doctors came to see us and meet Jericho.  They wanted to say hi and get to know him so he would be more cooperative and comfortable with them when the time came for him to go to the operating room. The anesthesiologist came to meet us and mostly had to reassure mom that Jericho would be ok and he wouldn't let him cry or be scared.  He had a game for us to play so Jericho could happily get to the operating room.  We went out in the hall and he asked me to say "On your marks! Get Set! GO!" ...I did that and we ran down the hall (me still holding Jericho's hand) as we raced with the doctor.  We did that a couple of times and then went back to wait in the playroom for a while because Jericho was so fast that the Dr. had to go find some running shoes before he'd come back and race again.
When the time came for Jericho to go, we walked down the hall with Daddy and the Anesthesiologist held his hand this time.  We got up to the line and Daddy filmed while Mommy said, "On your mark! Get Set! GO!"  Jericho let go of my hand and ran with the Dr. down the hall to the corner.  We turned the corner and did the race one last time.  This time the finish was way ahead of Mommy & Daddy and it ended at the big doors to the operating room.  Jericho won so he got to push the big button on the door and went through with the Doctors. 
We were so nervous that he would be in there crying and Daddy quickly got his phone out and posted a prayer request on facebook asking eveyone to pray that Jericho wouldn't be sad.
We waited in the parent's waiting room for about 2 hours.  When the doctors came to see us, they said Jericho didn't cry at all and he did a great job.  He got to blow up a "balloon" a few times until he got sleepy enough and they said he cooperated very well until he went to sleep.  I really wanted to hold him until he went to sleep, but they wouldn't let me into the O.R. and they said he did just fine. (I still wonder if they would ever come back and tell a set of parents that their son cried and threw a fit the whole time until they got him sedated - somehow I just don't think they would tell us if he did) But, I don't think he did judging by the way he acted all day and he still thinks the hospital is a great place, loves all the nurses here and thinks the Doctors are great.
They collected 338 cc's of bone marrow from Jericho's hipbones and said that the whole procedure went perfectly.
When they finally called us to come back to the recovery room as he was waking up, there he was...our little superhero.

I just had to take a picture of his IV that was perfectly placed on the back of his hand before they wrapped it up.  It looked so much like a "web shooter", I knew Jericho would love to see it.  

 Besides, now he had his own set of Spiderman webs hanging all over him plus a light up finger where the oxygen reading light was.
 Jericho's Spiderman blanket was a gift from Joshua's best friend Chase a few months ago.  Chase had this blanket when he was little and since he's not so little anymore and he knows how Jericho loves Spiderman, he gave him his old blanket.  I don't think he realizes what a special gift this was and how much Jericho loves it.  Since he has been away from Mommy so much and goes to lots of new places while Jacob is in the hospital, this blanket goes with him everywhere.  He especially loved having it on this day because it really made him feel like a special superhero with his blankie.
Jericho, look at all your "webs"!  Jacob has about 10 differnt lines coming out of him strung up to his IV pole all the time when Jericho comes to see him at the hospital.  I think he decided that those lines are like "webs" and he often talks about "fixing" his brothers with his Spiderman webs and his special Spiderman blood.                                                     

When he finally woke up, we changed him back into another set of Spiderman jammies and he had to move his special stickers from the hospital pajama to his own pajama.  The nurse even got special blue and red tape for his hand when she took out his IV so it looked like something Spiderman would wear.

 Jericho was soo tired by the time we got up to Jacob's room. I just sat him down to take a picture with Jacob. ...Jacob was pretty tired too.  They both slept for a while as we waited for Jericho's fresh marrow to be processed and brought up for Jacob.

The marrow arrived right at 2:30 in this little  ice chest.  The bag was packed in ice to keep it fresh. The delivery nurse brough the precious marrow into the room and there it is.  That's alot of marrow! No wonder Jericho is so tired.

As the nurse was hanging up the bag of marrow, the whole entire staff of nurses on the ICS floor came in to sing, "Happy Bone Marrow Birthday to YOU!"  They sang it to the tune of Happy Birthday and brought a big banner that we'll keep and use every year when we celebrate Jacob's extra birthday. His BMT birthday on August 26.

I woke up Jericho because we didn't want him to miss the big event as his bone marrow dripped in Jacob's line so he could see how it would work.  He was soo grumpy and did not want to wake up.  This was exactly 4 hours from when he last had pain medicine which is just when the doctors said it would be wearing off.  It was hard getting him to take some pain medicine and he cried through the first 20 minutes or so while everyone was singing the birthday song and we were hanging the marrow.  If I can get the videos to post, you'll hear him in the background. 

Jericho finally felt better and wanted to snuggle up with Jacob while the marrow was transfused to him.

That's the line, full of Jericho's marrow slowly pumping into Jacob.  True "life blood".

Checking out their birthday presents together while waiting for the marrow to drip.

These two couldnt be more alike...seriously.  Just look at them both in exactly the same position.  They do this sort of thing a's no wonder they match.

Napping in his new hat that he earned from Elliot the therapy dog.  Here you can really see how puffy he was after the procedure.  They had to give him a lot of fluids and his little face was really swollen.  His fingers were swollen too and he really looked like a different kid for a little while.

 That's right Jericho! Cancer FEARS YOU!!! You are a true hero and a life saver.  That's a lot to cheer about! 

Just getting through transplant, one day at a time.

It's day + 8 post transplant already! (it's now day +9 as I try to finish this post I started yesterday!) Jacob is doing pretty well still but he's really starting to feel the side effects of all he's been through.  Outside, he looks really good...great actually.  His insides are pretty torn up right now though, but he's handling it very well.  The chemo he got which took out his bone marrow also damaged his digestive tract. Since the lining of the digestive system is so tender and made up of fast growing cells, it is affected severely by the chemo and it causes what they call Mucusitis. Thankfully, the ones inside his mouth have been staying near the back so he is still able to talk and sip water.  The damage is all down his esophogus though and it really hurts in his chest now.  His stomach won't tolerate anything other than water right now so he also get's nauseous a lot.  All of this is "normal" though and it's all the stuff that the Doctors expected to see.  They see it all the time and they know how to help him through it.  He has pain medicine and anti-nausea medicine that does a pretty good job so we are thankful for that.

Update for today...the above was written yesterday: The mouth sores have officially settled in the front of his mouth. This morning, it became to hard to talk and his pain medicine got increased with a higher continuous rate plus a higher demand dose. It helped a lot, but nothing can really stop the pain completely. It just makes the pain more bearable. 

I've been wanting to finish the story about the transplant and post all of the pictures we took on 8/26 of Jericho and Jacob.  I haven't been on because Jericho had some mild complications and I went home to be with him for 3 days.  I leave my computer at the hospital so I didn't get any writing or even update on facebook for several days.  I also decided that while I'm at the hospital, if Jacob is awake, I stay off the computer.  When he is awake, I want to be with him even if we are just watching a TV show together.    He is sleeping right now, so let's go back to that story... I'll start a new post.