Bow and Arrow

Oh my goodness, to say a lot has happened in a week and a half would be an understatement.  It has been very busy... good busy, but still busy. 

Faye was just getting used to hanging out in the hospital....

 

But come Wednesday the 1st it was time to get some work done. She was set to get a number of tests done, to check to see if she was in remission, and then if she was in fact in remission she would need a bunch of tests to get a baseline to see how her body is working now, compared to how it is working after the bone marrow.   Faye started out first thing in the morning with a Pulmonary test.  This is a breathing test to test her lung capacity and strength. She had to put her mouth on a tube, she had a screen in front of her with lit candles, and she had to try and blow all the candles out, she did great at this test.

Next it was on to the bone marrow biopsy.  They try and get it done as early in the morning as they can, because she hasn't been able to eat or drink anything since midnight, which really is like 9 because she fell asleep.  So here we were waiting... it was about 10 and she was getting a bit grumpy because she was hungry.  I couldn't help but stare at her feet and realize the importance of the test we were waiting for, this test is about to determine the path, and the plan for this journey.

 

After the Bone Marrow, we headed back to the room, she was super grumpy, she wouldn't even eat, which was the whole reason she was grumpy, was because she was hungry.  After she ate, she felt much better. 

Dr. Krance, the Bone Marrow Transplant doctor came and talked to us.  He told us that if everything looked great they were ready to take Faye on the transplant floor on Tuesday the 7th.  Oh my goodness, this was getting so close, this was getting scary, and ever so real. 

 

Again Nixon also had to come down on Wednesday for more tests too.  This time wasn't as successful as last time.  He knew what was going on, and he put up much more of a fight.  I ended up holding him on my lap, and hugging him as tight as I could.  They got it working in the first poke, and halfway through the draw it stopped giving blood.  So here we were again, getting more pokes than we want.  They tried the other arm, and they couldn't get it to work.  So we moved to a room with a bed, laid him down, I practically had to lay on him to hold him down, and they got it to work. I was trying to talk to him the whole time they were doing it, to get him to take his mind off of it.  I told him I am sure they could get him a popsicle, and between screams he said "I want a purple popsicle"  This poor kid....

 But nothing that a popsicle and iPad can't fix.  Again he got over it quickly.... he got quite the bruises to show for those pokes.

 

While I took Nixon for blood work, Nick took Faye to get and EKG, and Echo.  These are both tests to measure, and look at the heart. All of this Chemo really takes its toll on the heart, it causes the heart to work so much harder than it is used to.

 

It wasn't just a big day for Faye and Nixon.... Baby Emily got her PICC line placed.  She handled it like a champ.

 

 

 Twiners!

 

And by Wednesday night the preliminary results came back that there is No Residual Disease.... Wonderful news, they still had to send and get more extensive tests done on the bone marrow, but for what they had back already this was wonderful news! And because of this, it looked like we were headed to the Transplant floor on Tuesday.

 

SUPER FAYE has done it again!

 

Wednesday night also I think this all got to Mitchell.  He came home from scouts just crying.  Nick talked to him to figure out what was wrong.  Mitchell couldn't really tell him a specific thing.  Nick talked to Mitchell and told him that sometimes there are all of these little things that happen, and eventually they all just add up into one big thing, and it breaks you down for a bit.  I know while we are all "Handling" this, it still is taking its toll, and we all break down at times.  But we realize we just need to take a moment, regroup and be ready to handle everything again. 

Nick is incredibly good at being aware of what each of us need.  He is so great at realizing what is important, and he is very in tune with each of our kids and what they need, every single time. 

 

When Mitchell woke up Thursday morning and was still upset, Nick decided Mitchell needed a vacation day......

So down to the hospital Nick and Mitchell came to hang out with us. 

This girl was excited!

 

 

We spent the day playing games, and building Legos.

 

 

Thursday evening we got the news that we could go home on Friday for the weekend.

 

Again this girl was SUPER excited! Big thumbs up from her!

 

Nick took Grandpa Meldrum to the airport in the morning, and then came to pick us up.  We were all packed up and ready to get out of here.

 

Loaded up and ready to go! 

 I don't know who is more excited!

 

One of Faye's friends had a Ding Dong cake waiting for her when she got home!  It was delicious, she loved it!

 

One of our Favorite things to do as a family are make homemade pizzas.  Everyone gets their own personal pan pizza, and can put whatever toppings on it!  Everyone is happy, and everyone wins.  Faye requested this as one of her meals when we were home! 

 

Grandma Mary Ann flew in Saturday night.  We are so grateful she is willing to come take care of the boys during the week.  She only booked a flight here, not sure when we are going to let her go home.... if ever!

 

The night before we went home, Faye and I got on Targets website and Faye picked out some new bedding.  And a lamp for her room.  She was so excited when we got home to see her new bedding.  Some friends had gone over on Friday to clean the house, and they added more decorations, drapes, and throw pillows to the room.  She loved it so much she got 12 uninterrupted hours of sleep on Friday night!  We had to keep checking on her in the morning to make sure she was okay. 

 "Floppy Hat Faye" she had hanging up in her room every round last time.  And all those hats were hanging in her room.  When we came home last time, Nick made a hat rack for her to be able to display all of her hats.  Most of them don't fit her anymore, but can't bring ourselves to do anything else with them!

 

 

Before we knew it, it was time to head back. Before we went home we had Nurse Maria as our nurse for 4 days.  And before we knew we were headed home over the weekend, I had told Faye that when I went home on the weekend I would make Pumpkin Bars and bring her some.  Nurse Maria heard of this, and Faye said she would share with Nurse Maria.  Well just because we went home, that was not stopping Faye from sharing with Maria.  So on Tuesday before we went to check into the 8th floor, we had to make a stop onto the 9th floor to deliver Maria her pumpkin bars!

 

Tuesday was a long day of waiting, getting checked out, and waiting! Dad is the best at passing the time!

 

At around 4 we got into her new room.  This girl never ceases to amaze me.  Up to this point every time she has had to get a dressing change (they change the cover of her PICC line) she has screamed and fought it like crazy!  But not today, today she took it like a champ, she held her arm right out, every once in a while we would hear a "ow" but that was the extent of her complaints. 

 

And of course Emily had to endure a dressing change too!   

 

 

After an already long day and Faye handling it all it was time to get hooked up, and start her medicine.  She wouldn't start chemo til tomorrow, but to prep for the chemo they started a medicine that helps prevent seizures (which the chemo can cause) and antibiotics, to help her body fight off sickness! When she figured out that she was getting hooked up, she whined for a minute "I don't want to get hooked up". But then she looked at me and just let them do it. 

 

Over the weekend when we were home we had a talk with Faye.  We told her that when we went back to the hospital there were going to be a lot of things that maybe she didn't want to do, but she had to do them, so either she could do it willingly, or they are going to have to make her.  And the sooner she did everything they asked her to do, the sooner we would get to head home. I guess the talk worked, because she was doing awesome!

 

After a long day of getting all settled, we were getting ready for bed.  I asked Faye if she wanted to say the prayer or if she wanted me to say the prayer.  She opted for me to say it.  I asked her what we should pray for.  She sat there for a minute, then she got a big smile on her face and held her finger up like she had an idea.  "We should pray for Nixon that he will be okay when he has to do the "Bow and Arrow" (thats what Faye calls it) next Friday". It is amazing to me these little kids, and their innocence.  We are truly grateful for all of you who read this, support us and pray for us.  It is definitely felt here.  And because all of you pray for Faye, she has the strength to pray for her little brother.

 

Again the youth in our ward sent us with a box of decorations, we are slowly working on getting her room decorated!  I don't know who is having more fun... her or me? 

 Although we might need some help, because anything that we have taped up, fell down in the middle of the night... Dad might have to come save the day, and fix it all for us!

 

Here we go again, tons of game playing, which she continues to win mostly! 

 More decorating.... she loves making the decorations, its the picture taking that is hit and miss!

 

My Aunt Kim had this made for Faye.  Isn't it amazing.  She told us that when her nephew was in the hospital after a horrible car accident, he wasn't able to sit up, so they had a poster made like this, and they hung it on the ceiling so he could look up and see this poster.  Everyone who passes Faye's room has commented about how amazing this poster is! 

 

Its the quote at the bottom that is truly amazing:

"A HERO is an ordinary individual who finds the strength to PERSEVERE and ENDURE in spite of overwhelming obstacles" ~Christopher Reeve 

 

You are all HEROS to us!  We couldn't do all this without your love, support, and encouragement.

 

 

In. The box was this "make your own owl mask" 

Once Faye had the mask made we decided we needed to send Dad a picture. With the caption:

 "Owl" see you on Friday!  "Whoos" excited!

 

Last night I was talking to Faye about her hair.

Me: Do you think I should cut my hair like you?

Faye: Mine will grow back faster! Because yours is falling out, and mine isn't.

(we joke, are you sure Faye got the chemo, because I am losing more hair than her)

They tell us it will start falling out.... but for now it is holding on strong.

 

Faye is feeling pretty good, she has gotten 9 doses of 16 of the first chemo.  And Sunday she will start the second chemo, which the doctors have warned us that this first chemo the kids handle pretty well, its the second one that she will start to not feel so well.

 

So like another cancer mom told us "Plan for the worst, hope for the best". So that is what we will do.

 

So there you go, I think we are all caught up.  The current plan is that she will get 8 days of chemo, rest next Thursday, and do the bone marrow transplant on next Friday! 

 

So watch out, Faye is coming... and she has got this!

 

Also in exciting news... the more extensive bone marrow tests we talked about.... they have all come back NEGATIVE!  Which in this case negative is good!

We are planning on a plan

Last Monday we were able to meet with the transplant doctor, Dr. Krance.  He gave us a better idea as to what to expect once we make it down to the Bone Marrow floor.  The schedule if everything goes according to plan is:  she will receive strong doses of chemo that will wipe out all of the marrow in her whole body.  That chemo will be given over 8 days and on the ninth day they will take 1 pint of marrow out of Nixon.  That same day (after they do what they need to do to get it ready for Faye) they will give it to her.  It is amazing what our bodies can do.  They put this marrow into Faye and it finds where it needs to latch onto and starts doing its job right away.  Then (if everything goes smoothly and perfectly) she will spend 4 to 5 weeks on the bone marrow floor.  Then she is clear to head home.  The part that we weren't ready for was that although she is home, she is not allowed to go out of the home for another 6 months, except for the visits 3 to 4 times a week back to clinic for them to check up on her, see how she is doing, and make sure everything is still doing what it needs to. There are too many possible complications and risks to list so we are going to expect best case scenario and have back up plans far enough back on the burner we don't have to continually think about them but close enough we have a plan of action if needed. 

Miss Rosie was nice enough to come down and hang out with Faye so Nick and I could talk to the Doctor uninterrupted.  (Forgot the cord to the camera, so a picture of a picture will have to do)

She received her first ever set of Legos. Rosie helped her put them together.  Needless to say she loves them.  The hospital is a good place for those.  I told her if she were to try and build them at home, I know of two little boys that could cause quite a bit of drama.

Our little attempt at some sort of school til we figure out how to make that all work.  Now knowing that she won't be able to go back to school for probably the rest of the year, some big decisions need to be made.

"Mom look at my new braids!"

We played "Go Fish". And she got every single group.....

For four nights in a row we were lucky enough to have Erica (Or "Ninja Nurse" as Nick named her). She is so quiet when she comes in, usually Nick will wake up for a bit every time someone comes in to check on Faye, but there were a few times he didn't even hear her. She is good.  The last night she was with Faye she came in and said Faye was her only patient.  She was waiting for someone to get admitted, but they hadn't gotten word that they were here yet.  So she asked Faye if she needed anything. Faye wanted her to play a game with her, but was too shy to ask.  As soon as they started playing "Old Maid," she was good to go.

More Lego playing and feeling quite well.

After the boys and I came up to visit for Jay's Birthday, Mitchell was feeling sad.  He said "I liked it better last time when Faye and I could play games together." Last time we had Mitchell who was old enough to know what not to touch and a newborn who would lay where you put him.  This time... not so much.  Having a 3 year old, and a very busy walking one year old, makes so much harder to come and hang out all together.

So one night Nick and Mitchell left the little boys with Grandpa and came and hung out with Faye and I!

Best double date ever....

Even after all these years its still hard having to say goodnight at the door ;)

A few silly faces.... just for fun!

Nick's Dad arrived on Wednesday to be able to watch the boys while Nick is at work.  And Fridays Nick and I switch, so Nick brought Grandpa down to be able to see Faye. 

 Of course Nick had to bring Nixon because we already knew from testing last time that he was a match for Faye, but because we are actually going to need him now, they needed to do more testing to make sure everything was ready to go.

He was great. They weighed him, measured him, and checked his temp and blood pressure.  He did awesome.

After all that, they took him to get some blood drawn.  First they started in his left arm.  The lady from child life (people who help calm kids down, explain everything, and help it seem not so scary) held my phone while Nixon was playing it with one hand.  The nurse poked his arm, but she couldn't get blood or find the vein.  She kept moving the needle around.  Believe me, I was squirming watching it, but Nixon would look over every once in a while and say ow, then go right back to his game.  After a while she wasn't able to make it work and he had had enough.  She decided to try the other arm.  At this point he still wasn't crying, but knew that what they were doing did not feel good.

So onto the next arm.  The second they poked him, he started crying. Luckily it worked the first time.  He cried the whole time until they took the needle back out.  Once they took the needle out, he stopped crying and said to me "Look mom 2 band-aids!" As we were waiting to see the doctor, he would tell me every once in a while that it hurt.... but in my book he is a champ!

Saturday morning was not a fun morning.  Nick called and said she had been screaming and complaining about her stomach for 20 mins. He didn't know what to do, or how to get her to stop.  Eventually she threw up and they gave her some medicine to help her stomach and to help her sleep it off.  She slept for a few hours and woke up feeling fine.

Also her Wonder Woman stuff came in the mail.  For those of you who don't have Facebook, Wonder Woman sent Faye a special video saying she was going to send her her Crown, arm Cuffs, and a special Super Faye cape. 

Now Faye wants to be Wonder Woman for Halloween!

I know we post a lot of what is going on here at the hospital, but there is also a lot going on at home.  Everyone has/is being so amazing...being totally willing to watch the boys while Nick works (before family got here), doing laundry, cleaning our house, mowing the lawn, bringing food, bringing gifts, sending cards, messages, and phone calls. The list goes on and on..... we truly do feel so incredibly blessed for everything that everyone is doing for Faye and our family.... it is amazing!

On Saturday at the baseball and soccer fields in our neighborhood, kids could buy a water balloon for $1 to throw at their coaches or brothers and sisters to raise money for Faye.  It was fun to see and hear about.
This picture is of Mitchell's baseball team getting their coaches.... they were such good sports!

 And then we were able to help fill water balloons for more kids to do the same to their coaches.  Nixon was an especially good helper.... or good for comic relief, either way we had a great time!

Faye is staying busy doing art projects.

This big box is all from her Softball team.  She was so excited about every single thing she pulled out of it.... it was like a never-ending box of fun.... giving Faye plenty to do!  This girl sure is loved!

This hospital stuff is starting to become more of a routine now.  Faye has started taking her mouthwash all at once.  She used to have to do it in two rounds because there was quite a bit of it.  Now it is no big deal! 

 She has to do 4 of these a day. The nurse brings in all four in the morning... Faye decided it was a good idea to number them, and even today asked me, "Do you think we should probably do my mouthwash now?"

 We are being pretty boring around here.  Our nurses come in just to check on us, and they always ask if we need anything. Faye always says no.  But today when the nurse came in and asked, I said "So what do you mean what can you do for us?  Like give us some examples of stuff you can do for Faye?" So she said whatever you want.  So of course Faye got her to play a few games.  Spot It, Frozen Memory, and Frozen Slides.  Faye won everything  We have this nurse for two more days... she has already declared a rematch!

Now onto the plan.  Monday morning her ANC (an indicator of how strong her immunity is) was 570, today it is 1190.  We were shocked, Sunday it was 0.  Because it was higher than we all expected, they decided that she will probably be ready to check her bone marrow on Wednesday.  The results of that will then let us know what to do next.  If there are still Leukemia cells present she will be doing another round of Chemotherapy. What Chemo types will depend on how much Leukemia is still lingering.  If they can't detect any she will be declared in remission and they will start trying to squeeze her in the marrow transplant schedule and begin that exciting process.  

So pretty exciting stuff going on around here.... Plans that will inevitabily change are beginning to form.  Although we know the plan will change 100 or more times it make us feel better to say we are forming one in our heads.... it all sounds great.