Sunday, March 31, 2013

~Eli's First Easter~

The Easter Bunny visited us last night!  As it should be, Eli was spoiled!  Between me and Logan and the hospital he got 3 baskets filled with all sorts of fun stuff.  We had a great morning together and almost felt like we were at home together :) Here's our little stud muffin in his Easter outfit:

  After checking out what the bunny brought, Eli had a little egg hunt with daddy :)

It's kinda hard to see but there's an egg down by his right hand
Logan and I were able to go to the sacrament meeting here at the hospital which was great like always but especially today given the nature of the holiday.  Later on in the evening we dyed eggs together and had lots of fun :) **TIP: Unless you want colorfully painted lips, I suggest you don't stick an egg with wet dye in your mouth!**

Eli Update:
Our little fighter has been such a champ and is doing so well considering all things.  He has continued to eat really well on his own which has pleased his doctors quite a bit.  Unfortunately he's starting to develop mucositis which is a side effect of the chemo.  It typically starts in the tummy and then sores often develop throughout the throat and mouth.  Some cases are worse than others so we are hoping his stays more mild.  Eli has always been a great eater and still has the desire to eat but every time he swallows he just starts crying and can't finish :( He will likely start IV nutrition tomorrow to give his tummy and entire GI tract a break until he can handle eating on his own.  We're hoping he doesn't have to be on the IV nutrition for too long because sometimes it can be difficult getting kids to eat again when they haven't had to for so long.  

Aside from the mucositis, Eli is such a happy baby.  He's sleeping well and handling everything else great.  Today is day +6 and his numbers are all still zero which is expected.  The waiting game continues until he engrafts!

We hope everyone had a wonderful Easter!

Fight on, little Eli!

Monday, March 25, 2013

~A Second Chance at Life~

It's official!!  Our little fighter is now on the road to recovery after receiving a bone marrow transplant today!!  We have had a great day filled with fun and excitement as we watched our beautiful baby boy receive a second chance at life.  I woke up feeling like it was Christmas I was so excited :) Everything went according to plan and basically as well as possible.

Our day started with a hospital photographer coming in and taking pictures of Eli.  She was going around the hospital taking pictures of some of the patients and asked if she could take a few of Eli.  We were happy to have him participate!  He was sound asleep but I think they turned out pretty cute.  Around 12:30 Eli's party started!  A bunch of the staff came in to sing, give Eli some gifts and wish him well!

The two toys are from me and Logan (he won't be able to use them for a few months) and the darling blanket, stuffed elephant, teething toys and BMT t-shirt are from the staff :)

Anyone that wants to participate guesses what day they think Eli is going to engraft (when his counts get to a certain point and they know the marrow is making itself at home) and puts their name on that day and a dollar in the envelope.  The winner gets the glory and Eli gets the money :)
 Right after our little party, they quickly got the transfusion started!  Most people think (and we did too before we got involved in the whole process) that a bone marrow transplant is something that happens in surgery but it's actually quite the opposite and very "anticlimatic".  It happens in the room, right at his bedside and it is just put right into his central line.  Eli slept through almost the entire thing which only lasted about 45 minutes.  His blood pressure spiked pretty quick so they gave him some fast acting blood pressure medicine and that did the trick!

He woke up towards the end and was a pretty good boy while everything finished up: 

I waited all day for Eli to wake up enough so I could take some pictures of him but he is getting so many meds that make him sleepy so he has basically been zonked out all day.  I attempted a few and this is what we got:

The real waiting game begins now!  We no longer have to wait to find Eli's typing or find him a match or wait for the transplant to happen.  All we have to do now is wait for the new marrow to find its way into his body and make itself at home.  We will be able to go home when his ANC (absolute neutrophil count) gets to 500 and stays there for at least two days in a row.  500 is still WAY below a healthy persons number but that's when they start preparing us for discharge.  The average day of engraftment is 25-28 days so it will likely be at least a few weeks.  Our main goal continues to be to keep him healthy since his counts are lower than ever because of the chemo and hopefully keep him as comfortable as possible.

Logan and I can't say enough how proud we are of our little Eli and how grateful we are to each and every one of you.  We couldn't be where we are today without all of the incredible support we have received each and every day!

Fight on, Eli!

Sunday, March 24, 2013

A Day of Rest

The day we've been looking forward to for what seems like forever finally came yesterday!  Eli finished his last dose of chemo late last night (technically early this morning) and you can bet we celebrated!  We are so proud of how well he handled everything and so grateful for the strength he was blessed with to do so.  Looking back over the past 8 days, we'd probably sum it up as being pretty smooth sailing the first 4 days and pretty rough the last 4.  Logan and I can definitely agree on one thing: We have learned so much from our 2 1/2 month old on what it truly means to be strong during the trials we're given.  Thank you, Eli, for fighting so hard and teaching your mommy and daddy so much!

We were so excited when the time remaining hit all those zeros!
It seems like once the chemo is finished, the side effects should subside as well but unfortunately that's not the case.  Some of the side effects that can be pretty brutal don't actually start showing up until several days after the last dose of chemo.  Today is technically supposed to be Eli's rest day but his tummy is starting to reject anything that goes into it.  The doctors expected him to stop eating after a couple days but he has continued to pleasantly surprise them with how well he is eating.  He has still wanted to eat all day and has eaten really well when we've fed him but right after he finishes it all comes back up.  We've been trying different anti-nausea meds in an attempt to calm his little tummy but if that doesn't work they will probably put him on TPN for awhile which is nutrients through his IV so his stomach can have a break.  Fingers crossed we're able to keep him eating!  Several people have asked why his hair hasn't fallen out yet and the nurses say that it typically takes a couple weeks but they also mentioned they've seen babies that never lost their hair.  Eli has already lost a lot of it but maybe he'll luck out and keep a bit! 

Tomorrow is the real big day we have been anxiously awaiting!  It's pretty crazy to think that because of the advanced medical technology available to us, out sweet little boy is going to have a second chance at life.  We are so grateful for the care that has brought us to this point and know he is going to be in very qualified and guided hands tomorrow and throughout the rest of his recovery.  Eli's transplant is currently scheduled for 12:30 (we all know that can change pretty easily) but he'll have his bone marrow birthday party before then :) We are so excited to get our little boy on the road to recovery!

Logan and I know that Eli has done so well with everything and received so many  blessings over the last 6 weeks because of the numerous amounts of prayers, thoughts, love and well wishes that have been sent our way.  We also know that he will do that much better tomorrow because of all of your support.  Thank you so much for helping our family get through this journey!

Our sweet little boy was able to go off oxygen today!  It's not uncommon for him to do well for awhile and then to need it again but hopefully he can get a good break from it.

Friday, March 22, 2013

Chemo: Day -4 & Day -3

Unfortunately I wasn't able to give an update after yesterday's doses of chemo but yesterday and today were pretty similar as far as how Eli has been feeling so I'll just combine them into one post.  

Looking back on the first four days, I think Logan and I better appreciate how well Eli handled everything because the last 3 have been much tougher.  The doctors said the chemo used during the first 4 days is typically the hardest on patients so I think we were hoping since he made it through those days so well the last 4 would be pretty similar.  That hasn't been the case for Eli but we totally understand that every patient is different. Luckily he will be done in just over 24 hours from now!

We are able to control his pain pretty well with some strong pain meds that also help him sleep but the toughest thing on him is his diaper rash.  They have given us all sorts of sprays and creams to use on it but as his immune system gets worse, there's not much we will be able to do for it until his counts go up and his body can heal it on its own.  We try to change his diaper as often as necessary but as little as possible (I hope that makes sense!) in order to keep it clean but also to prevent irritating it too much by cleaning it so often.  One thing I will definitely cherish more in the future is a rash free little bum!

We are so excited to reach this time tomorrow!  Eli will get one more dose of chemo tonight at midnight, then tomorrow at 6:00am, noon, 6:00pm and midnight and then he will be chemo free and hopefully completely immune system free as well!  Apparently some of the side effects of the chemo can start to take effect a few days after he finishes so fingers crossed he experiences very few of them.  

The audiologist was hoping to repeat the hearing test today to verify the results she got the first time but he's supposed to be sleeping so she can get an accurate test and he wanted nothing to do with sleep when she came in!

I always feel so horrible that we can't give Eli baths right now because of his central line but we gave him a sponge bath today and he loved it just as much!

7 days down, 1 day to go!

**In case you didn't see my Facebook post...Last night, Logan and I were anonymously given an incredibly generous gift basket.  We were so thrilled and can't express our thanks enough to whoever gave us the amazing gift.  I hope whoever it's from knows how much that meant to me and Logan.  We pray you will know what a blessing those things will be to us!  Thank you, thank you!**

Wednesday, March 20, 2013

Chemo: Day -5

Logan and I have known for a long time how strong our little Eli is but he seems to remind us everyday what a powerful spirit he actually has.  The first four days of chemo went so well even the doctors were surprised how great he was handling everything because those are typically the toughest days on patients.  Today, day 5, Eli started two new chemo drugs and unfortunately the side effects are starting to catch up to him.  It's possible the new chemo meds are making it tough on him but the doctors think it's probably just the first med that's finally setting in.  Despite having an awful diaper rash, feeling nauseated and being completely uncomfortable, it is easy to look into Eli's eyes and see what a fighter he is.  He has only cried a few times when his pain gets really bad but otherwise he'll lay in our arms and stare at us with a look that clearly says he is determined to fight as hard as he can.  I know that probably sounds weird since he's only two months old but I just know something like that is going through his little mind.  We couldn't be more proud of him!

Eli's doctors have been pretty confident that his specific type of SCID is called Reticular Dysgenesis but they had to wait to get his gene testing back to verify that for sure.  We were informed today that the results came back and he definitely has Reticular Dysgenesis.  We also learned that rather than having the typical XY chromosomes like a boy, Eli's are XYY.  We held our breath as we waited to hear what this means for him but it turns out it actually won't effect him much at all except in one way: he will likely be really tall.  We can handle that news for sure!  We were nervous it was going to mean additional problems so we just laughed when she told us.  Who knows...maybe Eli will be the first deaf NBA player! ;)

The nurse Eli has had the past 3 days came in to say bye to us this evening and looked like this:

Haha...he should technically have a mask on before coming in but we figured this was good enough!

5 days down, 3 days to go!

Tuesday, March 19, 2013

~Chemo: Day -7 & -6~

**Sorry for the delayed post about yesterday's treatment.  I was in the middle of writing it and fell asleep!**

Monday, March 18th (Day -7)
Another day of chemo is complete and Logan and I are once again so grateful for how well things continue to go.  Eli is a total rock star and handled his third 8 hour dose like a champ!  The doctors expected him to stop eating within a couple days and he is still eating, in their words, like a piggy :) He's still sleeping a lot during the day and not much at night because the meds they give him make him tired but it hasn't been too bad because Logan has been off work and can take over during the day while I catch up on some sleep.  Thank goodness for such an awesome daddy!

Eli's central line still looks really good and is working great so they took out his picc line today.  I'm a major wuss and hate to be around when they do those things so I always go for a walk and let Logan stay with Eli.  Everything went really well and he now has both arms free of any type of line!  Happy day!  

After tomorrow's treatment he'll already be halfway done!

3 days down, 5 days to go!

Tuesday, March 19th (Day -6)
We are officially halfway done with chemo!  Logan and I are so proud of our little fighter.  Eli had another great day and handled everything really well.  The doctors keep expressing how impressed they are with how well he's eating and tolerating the chemo.  We knew a long time ago we had such a strong little guy!  Because his counts are continuing to decrease, he will be susceptible to just about anything and today he developed a pretty wicked diaper rash.  We've been using a cream after every diaper change but there's really no way to prevent it.  His little bum was only slightly red this morning and by this evening it was already bleeding :( We were able to get him some pretty strong cream to put on it so hopefully that helps a bit. 

We had a monumental moment last night!  Eli typically eats every hour and a half and sometimes he'll go two hours which means I'm up close to every hour at night.  I haven't hated it too much because he's gaining weight so well and I'm able to take a nap during the day if I need to.  Last night he went down shortly after 9:30 and I went to bed around 10:30 knowing he would be waking up any minute.  I heard him crying and woke up and it was 2:30!  I had to stare at the clock forever to see if I was having a hallucination or something.  Our nurse even came in and couldn't believe he had slept so long.  I didn't want to get too excited right away though because I was sure he was going to eat and be wide awake since he had slept so long but he ate and went back to bed for another 3 straight hours.  It was amazing and I felt like a new woman today!  Fingers crossed he can do that again!

For the next 4 days Eli will get two new chemo medicines so we're hoping he tolerates those as well as he has the first medicine.  The past four days he has received one 8 hour dose each day and starting tomorrow he will have a 2 hour dose every 6 hours for the next 4 days.  Sunday he will have a rest day and Monday will be his transplant!  

We are so grateful for all of the prayers that have been said on his behalf and know they are the reason he has done so well.  It is such a comfort to know so many people are supporting us and sending good thoughts our way.  Thank you, thank you!

4 days down, 4 days to go!  Fight on, little Eli!

Ps...Sorry for the lack of pictures.  I have been a slacker the past couple days but I will do better tomorrow!

Sunday, March 17, 2013

~Chemo: Day -8~

Wow...what another wonderful day!  Our little fighting champ is doing so well and tackled his second day of chemo like it was his job.  Eli continues to eat, sleep and interact great so Logan and I feel very happy about the first two days.  The worst thing that's happened so far is his schedule seems to be switched so he slept most of the day yesterday and from  2:00am-6:30am he only slept for about 30 total minutes.  I was exhausted this morning but if that's the worst of my worries so far I definitely can't complain!  Fortunately he was awake quite a bit more today so hopefully we can get better sleep tonight.  

Up until we started chemo I had Eli's med schedule memorized so I always knew what to expect but now that he started his treatments I don't stand a chance of keeping track of everything!  In a 24 hour period, Eli receives 13 different medications multiple times a day.  The majority of his meds are given through his line which is so nice because he absolutely hates his oral ones.  On top of his meds, he has to have mouth care every four hours which consists of the nurse swabbing his mouth with two different antibiotics to help keep any germs out in case he develops mouth sores from the chemo.  If we ever have to give him medicine at home in the future for something it will probably seem like a piece of cake compared to what he gets now!

One thing I absolutely love is celebrating holidays whether it's a small or big one.  Logan is always such a good sport to put up with my ideas and I was so excited to have Eli around for them this year!  Unfortunately being in the hospital makes it difficult to do much and I totally forgot it was even a holiday today :S I desperately searched through Eli's wardrobe for something green but he's still wearing newborn clothes so the selection was quite limited.  This is all I could find:

Lame, I know
I am determined to do better the rest of the time we're here so thankfully I have a chance to redeem myself in a couple weeks on Easter!

 Lovin his chill time with daddy :)

Eli has now completed 2 of 4 days of his first chemo med and will switch to two different chemo meds on Wednesday.  Fingers crossed he continues to handle things so well!  2 days down, 6 to go!

Saturday, March 16, 2013

~Chemo: Day -9~

Here at the hospital, the day of Eli's bone marrow transplant is considered Day 0.  Every day before is a negative day and every day after is a positive day.  If all goes well, the doctors hope to lift some (but definitely not all) restrictions by day 100.  Because Eli started his chemo today, it is day -9.

Two days ago Eli went under sedation again to have his central line replaced.  After the first one was put in, it was infected within 24 hours and removed after 48.  Our main goal the past couple days has been to keep his new line extremely clean and to do everything we can to keep it from getting infected.  Everyone has been watching it very carefully and it has looked really good.  The plan was to pre-medicate Eli pretty early this morning and then begin his first 8 hour dose of chemo by 8:00am.  I finished feeding him and went to change his diaper and when I checked his line it was bright red and puffy! :S His nurse and doctor came and looked at it and couldn't believe he was already reacting to it again.  Because his first line got infected so fast, they kept him on a very strong antibiotic to help prevent his new one from getting infected so Eli's medical team is thinking it's maybe not infected but possibly just irritated.  Keeping the central line in is very important so they decided to put some steroid cream on his chest and watch it very closely.  A few hours after we put the cream on, the redness was almost gone so that is a huge blessing!

Because of the scare with the line, we got started a bit late with the chemo but everything since then has gone very smooth.  A new IV pole was brought in to accommodate all of the medications Eli is receiving around the clock.  Typically he only has 1 IV pump and now he needs 3.

Not happy about me taking pictures with the flash
 The pre-medications are given to help prevent an allergic reaction to the chemo.  If Eli was going to have an allergic reaction to the medicine, it likely would have happened within the first 15 minutes so we were feeling great once we made it passed that point.  Let's fast forward 8 hours because nothing out of the ordinary happened throughout the entire dose of chemo and that's exactly what Logan and I like!  The doctors tell us that it may take a while for Eli to experience the symptoms of the medicine but we are very grateful to have made it through the first day with him feeling so good.  They expect him to stop eating at some point but he ate like a champ today so we are feeling extremely happy and blessed!

Such a happy little fighter!
One day of chemo down, 7 more to go!

Monday, March 11, 2013

~A Name and a Blessing~

Before Eli was born, I did what I think many other first time parents do and tried to imagine what several "firsts" would be like.  Many of those things have been similar to how I imagined them but one thing that was quite different was his baby blessing.  When I thought about Eli's blessing before he was born, I imagined it being in sacrament meeting with all of our friends and family gathered around--not in a hospital room with only a couple people present.  The best part about it all?  It was even more wonderful than I ever could have hoped for!

Before we got to the hospital, we figured we would bless Eli sometime in April when it started warming up a bit and there wasn't so much sickness in the air.  After he was admitted, we talked about it and knew we would have to do it in the hospital but decided to do it around the same time still.  When we were fortunate enough to find his match so fast and learned that he would be starting chemo in such a short time we planned the blessing right away because we knew we wanted it done before he started his treatments.  Both mine and Logan's dads were able to come in and assist with the blessing which was so great.  Eli slept through the entire thing (pictures included) and Logan gave the most remarkable blessing to our sweet little boy.  I know everyone says this but it truly is wonderful to have a husband that honors his priesthood so well.  Yesterday was definitely a day I will never forget!

Lookin' studly in his outfit from Grandma Janet

Still can't get over how much I love his shoes!

Love these two so much!

Eli was also lucky enough to share his blessing day with his cousin Lily.  I snuck out of the hospital for a bit while Logan stayed with Eli so I could see Lily blessed.  She looked absolutely beautiful and her daddy gave her the perfect blessing.  I'm so happy I was able to go!

Eli and Lily will be great friends as soon as he's healthy enough to play!
Update on our little boy:

We have now reached the week that everything begins!  I remember us talking with the doctors the day Eli was diagnosed about everything that we would do here at the hospital and it seemed ages away so it's hard to believe it's already here!  (Keep in mind it has happened way quicker than even the doctors expected!) We are very excited to get everything started but it's definitely bitter-sweet.  I try not to think about what Eli will actually go through too much and just focus more on the fact that we are one step closer to getting him healthy and home.

Assuming the plan doesn't change, Eli is scheduled to begin chemo on Saturday the 16th.  He has 8 straight days of chemo with the first 4 apparently being the toughest on him.  Luckily Logan has all those days off so it will be nice to be together.  After he finishes chemo, Sunday the 24th will be his rest day and then he'll have his BMT on Monday, March 25th!

Before we get to Saturday, there are still a few things that have to happen.  They will draw quite a bit of blood this week in order to prep him for his treatments.  He had his third blood transfusion yesterday and did great with it.  His picc line is working great but he has to have a central line for transplant so he will have that replaced on Thursday.  Fingers crossed this one doesn't get infected!  While he's sedated, they will also repeat the hearing test, ENT will examine his ears more thoroughly and he will likely have molds taken for his hearing aids.

Here are a few pictures we've taken lately:

Oh the joys of bathing him with a picc line!  It's definitely easier than a central, that's for sure.  You can see on his chest where his central line was infected.  It looks loads better now than it did a short time ago.  You can also see his poor red cheeks from the oxygen stickers.  He gets a short break from them every once in a while.

Later this week we should have another update when we start chemo.  Until then, this is officially our consultation week because we'll meet with many different teams of doctors as they prep us and Eli for chemo and his transplant.  

Once again, we can't express enough thanks to everyone for all you continue to do for me, Logan and Eli.  We are amazed at the generosity, love and concern others have shown to us.  We couldn't do it without each one of you!

Monday, March 4, 2013

~2 Month Birthday Present~

Our beautiful baby boy turned 2 months old today!  Despite everything we have discovered about his health the past few weeks, we can genuinely say we're having the time of our lives being Eli's parents.  Not a day goes by that we don't feel so much joy because he's a part of our family.  Happy 2 month birthday, little champ!

Eli's Scoop:
-Eli currently weighs 8lb 10oz (to many of you that probably seems tiny for a 2 month old but considering he got down to 4lb 14oz that is fantastic in our eyes!  He has been gaining weight really well since he got to the hospital which the doctors are very pleased about!) He's starting to get chunk on his cheeks and we love it!

-He still wears newborn diapers and probably will for a while longer.

-He really fills out his newborn clothes now and is starting to fit into some of his 0-3 month outfits.  I brought almost his entire wardrobe of clothes (up to 6 months) here to the hospital otherwise he might never wear any of them!

-I've said this a couple times already but he LOVES the bath and will sit in it and chill forever if we let him and as long as the water is really warm.

-About 2 weeks ago I had to stop breast feeding because they discovered I had been exposed to the CMV virus when I was younger and it can be passed through breast milk so we couldn't risk Eli getting it.  I was nervous about the transition to formula but he has done quite well and continued to gain weight like a champ!

-His two least favorite things (so far) at the hospital are getting his temperature and blood pressure checked.  I honestly think he'd rather get his blood drawn than either of those two things!  Unfortunately they happen every 4 hours :S.

-Eli LOVES his daddy!  He's with me all day so I'm nothing special but when his dad comes home from work he'll just stare at him forever and loves to play with him!

2 Month Birthday Present:
No, Logan and I didn't give Eli a two month birthday present but the doctors gave him the best present possible!  We were informed today that they found Eli's match! We weren't expecting it to be found for another month at least!  The doctors told us that it would take about 2-3 weeks to find his match once it went into the system and it was found a mere few hours after.  We are completely overjoyed and still shocked that we have been given this great blessing.  We know, without a doubt, that it is because of all of your thoughts and prayers that we have witnessed this miracle.  Even though he can't tell us, we know Eli is ecstatic as well! :)

The Updated Plan:
We have been here in the hospital for almost 3 weeks now and were originally told that he wouldn't have his transplant for about 2-3 months.  Because they already have his match, we will get going right away.  The match they found is a cord blood match, not a live donor match, which is what the doctors were hoping to find.  There are many great things about having a cord blood match and one of those is how much quicker we can get started.  Had they found a live donor match today, Eli's transplant wouldn't take place for a couple more months because we'd have to wait for that person to go donate their bone marrow, etc.  Because we have a cord blood match, it is already frozen and ready to go so it will be sent to the hospital and should arrive in about a week.  As soon as it is in the hospital's possession, the chemo will begin.  We haven't had an in-depth discussion about the details of the chemo and transplant yet but we have a rough idea of the timeline.  Chemo should take about a week and then the bone marrow transplant will take place right after which means Eli will probably have his transplant in about two weeks!

We are so grateful for the incredible amount of fasting, prayers, thoughts and love that have taken place in our behalf.  Logan and I know that the reason we have witnessed so many miracles already is because of each one of you.  While it can be nerve wracking to think about the treatments that Eli will have to go through in a few weeks we find so much comfort in everyone's support and the knowledge that he has many angels watching over him.  

As it has been for the past 3 weeks, our main goal continues to be to keep Eli healthy until his treatments begin.  Eli's doctors told us today that his immune system is quite worse than even most SCID patients which is one of the main reasons we are so grateful his match came back so fast--he really wouldn't be able to fight much of anything if he were to catch a bug right now.  Thankfully the hospital keeps this unit very clean and he won't have any visitors so we are confident he will stay healthy until his chemo begins.

We never imagined that Eli's two month birthday could be so exciting and filled with such wonderful news!

Fight on, little Eli!