day 15

Last night was a difficult night for our little man. Jake has been having horrible bloody noses and last night they could not get it to stop. It bled for over two hours. The blood kept going down into his belly which caused him to throw up a lot of blood numerous times. He ended up getting platelets which helped the bleeding to slow down and eventually stop. They gave them to him again this morning when his nose started to bleed again. His hematicrit was at an 8 today, so he also received a blood transfusion as well. He is still sick to his tummy and keeps that pink bucket close to his bed. He is still sleeping a ton but we are hoping and praying he will engraft soon. It could be any day now! Every so often we see bits and pieces of his personality start to shine through. It has been nice to see him be his normal little self every once and while here and there. We have missed that fiery sassiness of his!

I have started to take sessions again!  Yay!  I am only taking them one day a month right now and will slowly add more days in as life starts to calm down.  And last but not least, I wanted to share this incredible birth story I got to shoot.  It was one of the neatest things I have ever been able to do.  I have toyed around with the idea of shooting birth stories and this made me want to do them even more.  It was amazing!

day 12

Day 12.  I have been lucky enough to take the weekend off.  It has been so nice not to have to sit in the hospital for hours on end.  Jeff stayed with Jake and I was able to spend some much needed time with Cole and Crew.  Jake is doing a little bit better.  He is sleeping a lot.  He was awake yesterday for a total of six hours.  Which is good.  He feels so yucky when he is awake, it is nice for him to get a small break.  And he feels better when he sleeps.  Not much has changed.  Still very sick to his tummy.  Nosebleeds.  And low counts.  He received more platelets again yesterday.  Hopefully we will see counts start to come up in the next week.  Engraftment typically happens between days 15 and 21.  We are keeping our fingers crossed!  It could be any day...

Hope

It has been an emotional afternoon.  One of Jake's sweet little friends lost his life to cancer today.  He was four years old.  And I am an emotional wreck.  This could so easily be our family.  There are so many things that could go wrong.  Jake's diagnoses is not a 100 percent guarantee that he will survive.  And I don't know how these families that lose their children do it.  My heart aches for little Atticus and his family.  No parent should ever have to go through anything like that.  And yet, it is constantly in the back of our minds.  Life is so short and so fragile.  Watching these numerous families helps to remind me constantly not to take one second for granted.  These little kiddos are a gift.  And I am so grateful to be a mom.  As hard as some days are, I would not change one second of it.  This is forming Jake into who he will become.  It has made him grow up way too fast and learn things no nine year old should have to know.  All of these kids are awfully special.  I am so grateful he is mine.  And I am holding all three of my boys extra close today.  I am so grateful that we have hope.  Hope that one day we will not have to worry about cancer.  Hope that our little boy can get better.  Because he will.  And one day, we will not have to worry about this cancer crap anymore.

a graduate, fit fun run and day +9

I am having a hard time keeping track of days lately. Monday feels like wednesday, wednesday feels like friday... everything is just a blur. May also tends to be busier than december with the kid's schools trying to fit everything in the last three weeks. Yesterday, Jeff nor I stayed at the hospital for most of the day. Crew had his end of year preschool program and we were busy finishing up paperwork and a final walk through on our house. (yup. We are moving in the middle of all of this. We are only slightly insane.) Crew was darling in his program and has worked so hard all week on his poem. He kept asking if I would hold his hand through it, so I was nervous at how he would do in front of everyone, but he was a ham. He danced and sang and did his part perfectly. I know I have said it before, but this kid is like a ray of sunshine. He takes happiness with him wherever he goes. Sounds so cheesy. But it is so true. He was and still is a large part of our sanity in our lives right now. Yesterday as I was cleaning up his room, he randomly walked in and said, "You look so pretty today mommy!" He melts my heart on a daily basis.

 

 This morning, Cole had his fit fun run and has been star of the week. I thought for sure he would go the full three miles as fast as he could, but he looked a little tired this morning and decided to be lazy and just do the one mile. The little stink. He needs his sleep like his mamma. He had fun and loved being the center of attention all week.

 

 Jake. Dear sweet kind Jake. Yesterday was rough. And unfortunately it had to be on a day that Jeff nor I was around. Apparently, he would not take his meds. And every time the nurse came into the room he rudely told her to get out. He did not feel good. At all. Usually he gets the same nurse a couple of days in a row. Not today. They stuck someone else with him. Because he still feels like crap and was so mean to her yesterday. He fell asleep early last night and did not wake up until after 10:00 today. He keeps getting nosebleeds. And his blood counts are low low low. He had a blood transfusion and platelets yesterday which usually helps perk him up a little, but he just feels so crappy nothing helps right now. It is really painful for him to take his pills. His mouth sores are not horrendous, but they go all the way down into his belly, so the ones in the back of his throat make swallowing and even talking painful. He is nauseous for most of the day and keeps his pink bucket next to him constantly. Ugh. It is miserable watching him. It is hard to leave him when he feels so yucky. We knew it would get like this, but it is hard to watch your child be in so much pain and not able to do anything for him. We hate it. And we most likely have a couple more weeks like this to go. We just wait and watch and pray he does not get any fevers or any complications.

 

(update:  I meant to post this yesterday (friday) but never got around to it.  Jeff has spent the day with Jake today and said he is feeling a little bit better.  I talked to him on the phone and it is a night and day difference from yesterday.  He is still VERY tired and not himself at all, but seems to be doing a little better than before.)

This was recorded the day of Jake's transplant and Cole's surgery.  I thought it was darling and wanted to share.  Enjoy!



Our little man has a good couple of days.  That pain pump is working wonders.  He still will not eat anything, but the pain has been able to be kept down to a minimum.  MUCH better than sunday.  He still gets sick to his stomach every once in awhile and threw up again today.  There was a little bit of blood in there... which means the mouth sores have most likely traveled down to his belly.  It has got to be pretty painful.  Luckily he is one tough kid!  (And a little strong willed.  But we will keep him.  I kinda like him that way!)

The two other little kiddos are being spoiled rotten by grandma and grandpa and neighbors and friends.  Cole's back is healing well, but he is still a little sore and does not like any one to touch his back.  He is a little bruised and has two little holes trying to heal back there, but has acted pretty much normal since the day he got home.  They have found a bird nest in the playhouse outside and have been watching four little robins hatch.  Cole, especially, has become attached and overly protective of them.  He will not allow anyone outside and you have to whisper so you don't scare the birds away.  He asked me today why people kill animals, because according to him, animals have families too.  Sweet boy.  He was mad at my mom the other day for wiping ant hills off of the driveway.  He makes us laugh and is a little more tenderhearted than most.

Our baby robins:



Our cousins from Texas came to visit.  They were lucky I was not there the day they left.  I want to keep that little boy.  He makes me crazy!  He is one of the cutest things I have ever seen.



I should have done a picture of just Jake and Isabelle.  Isabelle LOVES Jake.  She tells her mom that she is going to marry him when she grows up and that because of Jake, Rockwell's middle name is NOT Reese.  It is Rockwell Jamieson.  Love her.  She is a sassy little thing.



I want this baby.



Great grandpa Howland came to visit



Jake's new body part.  He has to take this thing with him wherever he goes.



Visiting with Elliot Therapy Dog:



Our sassy stubborn skinny boy:



And finally, a video of Crew.  I love him.  He makes me crazy happy.

day 4

There is not much new going on around here.  Jake has been doing really well the last three days.  He has been in such good spirits.  Mornings seem to be the most difficult as he tends to get sick to his stomach and will throw up a few times here and there.  But as the day goes on, he starts to fell much better.   He laughs and plays and is his cute happy self.  His counts have now started to bottom out.  He received platelets today and as of this morning mouth sores are starting to get really bad.   They have hooked him up to a pain pump today because he is in so much pain and cannot eat.  He will barely even talk for that matter.  He grunts and points when there is something he wants and if he gets really mad, he will talk.  Last night and this morning it has been a huge fight to get him to take meds and bathe.  It took 45 minutes just to get him to take two pills and do his mouth care last night.  He is getting a little antsy being cooped up in one room and is trying to control the situation.  Which is understandable.  We all will be a little crazy by the time this is all said and done!

He is hooked up around the clock to numerous medications:

prograff (anti rejection med)
Actigoll
Prilosec
amphotericin (iv antifungal)
mouthcare (4x day)
methotrexate (prevent graft vs. host)
zofran (naseau every four hours)
meropenem (iv antibiotic 4x day)
pill (protect kidneys)
TPN and lipids
pain pump
(c-diff antibiotics 3x day)

In all honesty, I don't have a clue what they are putting into our kid's body half of the time.  It is a little scary to think of all these drugs going into him.  He also tested positive yesterday for a bacterial infection called c-diff.  It is an infection in his gut which causes belly aches and bad diarrhea and is usually caused from low counts and antibiotics.  It is fairly common for kids with low immune systems to get it, but it can be pretty painful.

Overall, he really is doing so good.  I think it sounds worse than it is.  But everything he is dealing with right now is normal.  We just need to get though the next few weeks and we should be good to go!  It is tedious sitting all day in a hospital room and is crazy to think we have been here for fourteen days already!  It is going by so fast.  (thank heavens) We can only hope and pray things continue to go as well as they have been.

On another note, we have a little friend in Texas who is four and has an inoperable brain tumor.  He is not doing very well right now.  Please pray.  Maybe because we are in the thick of it and it is such a huge part of our lives, but we hear constantly of children losing their battle to cancer.  Another little boy just passed away yesterday.  I don't know them personally, but I know his story.  It makes me so grateful that we are able to have so much hope.  Because a lot of the time, there is nothing no one can do.  As hard as it is, I would rather be in our shoes than in a lot of others' out there.  We have every hope that Jake will be okay.   It is just one more reason to say thank you on a daily basis.

TRANSPLANT DAY!

Day ZERO! We made it! And I still cannot even believe it. It has been a long time coming, and now we wait. There are so many things that could go wrong, but so many things that could go right as well. And we are praying constantly that things continue to go as well as they have been.

 Jeff stayed at the hospital last night, while I stayed with Cole. He had to check into same day surgery at 6:00 in the morning. I think he was a little nervous, because I got no complaints when I woke him up. He hopped in the shower, complained about being hungry, grabbed bear and he was ready to go.

 

 All the way up, he talked about what kind of smell he wanted in his mask (lemon) and that he gets to keep the donut pillow and mask. He was a little excited, I think.  Cole likes his 'things'.

 

We checked in and they got his weight and height and made him change into hospital jammies (which he wanted to keep) and of course he got to keep the 'crocodile' socks (which he has not taken off).

 

 We sat in the waiting room and he got to play the wii for a little bit. At this point he was starting to get really nervous, but I think there was a little excitement as well. It is his turn to do what his brother has done for years, and people have made a huge deal about him saving his brothers life.

 

He was taken back by the anesthesiologist at about 7:30 and the surgery lasted for about two hours. His marrow came out well. They ended up taking about 350 mL. They are only able to take about a teaspoon of marrow out at a time. If they take more, they start to get blood return and they only want the marrow. Which means, he got poked over seventy times. We were told that his little bones would be like mush by the time they were done collecting the bone marrow. He was a little sore when he woke up but did not want any pain medicine. And never once asked for anything. I am pretty sure any adult would have wanted to be hooked up to a pain pump after that. Not Cole. I think he likes to be tough.

 

He limped a little bit when he walked, but never said a word about hurting. Jeff keeps telling Jake that we finally know who the toughest one is when it comes to being in pain. Jake just laughs and says, "ya got that right!" We went up to Jake's room and got to wait a few hours for the bone marrow to get ready for Jake. The boys played games and snuggled on the bed together. It was very emotional to watch them. Neither one of them realizes the significance of what is going on yet. But one day, they will. And it will bond them together for life.

 

 This is the bandage that is covering Cole's war wounds. He thinks it looks like he is wearing a diaper!

 

 At about 2:00 the lab brought the bone marrow in! It was so so crazy to see that a little bag filled with red stuff was going to save our kids life.

 

 At this point, Jake had been given tylenol and benadryl to prevent any reactions from the transfusion. He looks a little loopy in these pictures. I am pretty sure he would have conked out in two seconds had the room not been filled with people.



 The doctors and nurses came in singing happy birthday and brought lots of presents for not just Jake, but BOTH boys. They loved it. And now Jake has two birthdays he gets to celebrate every year. Lucky kid.

 

 And the bone marrow gets hung up:



And starts to drip down the line:
 

 And it is official! Jake is receiving his brand new bone marrow!



 It was actually really anticlimactic. There is such a huge deal made about this transplant. Our lives have revolved around it over the last five months. It is all we have thought about.  Constantly.  Even when you try not to think about it, you do.  And it just like a blood transfusion. A little scarier, but it looks the same.  Now, we wait. It takes about 15 to 21 days for him to engraft. We have a pool going to see who guesses the right day. Jake gets all the money. So if you want to take a guess, guess away! The winner gets bragging rights.   Jake likes the fact he gets the money so be prepared to guess if you come visit!

 We will be here for about another four and a half weeks. Hopefully that is all. We are keeping our fingers crossed. Things have gone so well. It makes me nervous. Every morning I wake up wondering if today will be the day that mouth sores show up, or Jake gets sick or if something bad is going to happen.   I am pretty sure he has given both Jeff and I ulcers and gray hair and taken ten years off our life with worry. We love these boys like crazy. We are so proud of both of them. And we are so glad that this day is behind us!

days -3, -2 and -1

So so close.  We are getting so close to that day zero.  The last two days Jake has been on a chemo called cytoxin.  He has had it before, but this is a much higher dose.  Sunday was a good day.  Jeff spent the day with him and I spent the day with the other two boys for mothers day.  He ate well, played hard and watched movies.  I think the blood transfusion from the day before helped him have a little bit more energy.

Happy mother's day to me!  Jake made me a lego necklace and bracelet.  Coletrain made me the cutest book of all time at school and Crewsers gave me a flower magnet with his picture on it.  Darling boys.  Cole also made me breakfast in bed complete with flowers and waffles.  He was so sweet and so excited.  Love that kid.


Monday Jake woke up early and you could tell right off he did not feel as well.  He was cranky and tired and just sick of being in the hospital.  He desperately wanted some Panda Express, but he is not allowed to have food from restaurants anymore due to his low immune system.  His counts are quickly dropping.  We were told to expect mouth sores and for him to continue to go downhill from here on out.


Today is his day of rest.  No chemo, no radiation.  Just steroids, mouthcare, prilosec, zofran, actigoll and acyclovir.  His cocktail of medication!  He woke up sick to his tummy this morning and had a little throw up session.  As the day has gone on, he has gotten better and has actually eaten two pizza kid cuisines.  (Disgusting, but worth it if he will eat.)  His doctor has talked about starting TPN (total body nutrition.  He is fed through his central line) this evening.  He has started losing weight and with the mouth sores up ahead, he will not be able to eat anyways.  Coletrain had to come in and get lab work done this morning.  He does awfully well with those pokes.  That kid has an awfully high pain tolerance.  But he is starting to get a little nervous for tomorrow morning.  He is such a brave kid and we are so proud of him!



We could not be happier with the way things are going so far.  We have had no serious side effects or complications.  We only hope and pray that tomorrow goes well!  We will be able to start counting up to that 100 days!  Hooray!