As I sit here at 4:30am gathering my thoughts, I quickly realize I have done myself a huge disservice waiting this long to give an update on Xavier. I’d like to give a shout out to the 24 hour Starbucks here at Children’s Hospital. I’m serious, anyone who knows me well knows I’m not even joking. I am happy to report that while I’m awake, sipping coffee at this ridiculous hour, Xavier is sleeping soundly (and snoring a bit) without any discomfort. I am also happy to note that his comfortable sleep is not being aided by any pain or nausea medications. That in itself is a huge win. While I can’t wait to divulge all of the positive things that are happening with my courageous little man, I think it’s important to first take a step back and acknowledge some of the rather difficult challenges Xavier has experienced over the last couple weeks.
We have been dealing with nausea and vomiting on a daily basis, though it has gotten dramatically better. Typically he gets sick when he works himself up, is mad, or just when he wakes up in the morning which I think is pretty typical. We had to put the oral medications on hold for a bit because he couldn’t keep it down. Yesterday we gave it another go. We even lightly wrapped it in a fruit roll up!  We dropped the morning dose on the ground so we decided to just practice with a tiny piece of candy. He swallowed it great! Then last night we tried again, with the fruit roll up trick and he just threw it up. We’ll keep trying today!
One of my biggest fears going into transplant was knowing that there was a very large chance that Xavier would feel pain. Nausea I can deal with, but no one should have to feel pain. For a transplant patient, the main source of pain comes from the inflammation and ulceration of the mucous membranes lining the digestive track. Yep, that means from the mouth down to the bottom. And in our case, I emphasize the word BOTTOM!
While his mouth was a bit uncomfortable for a few days, it really wasn’t bad, considering. His bottom on the other hand started to cause server discomfort. It started off by poor little Xavier saying his booty is “bothering him”. It quickly spiraled into the discomfort being so bad that he was kicking his little legs around in what looked like severe pain. Our initial instinct was to try to calm him down with some pain medication. Morpheme is what they gave him. Tylenol is not an option because it masks fevers. The Morpheme not only did nothing for him, zero, it made him even more agitated. It was apparent to us that this was not a good drug for Xavier. We asked for some diaper rash cream and instantly, it made Xavier feel so much better. The relief from the cream only lasted about 5 minutes after we applied it and the doctors and nurses didn’t believe that it could just be a very severe case of diaper rash. For Me and John, we didn’t see why not. Xavier had a constant runny tummy every day since he started chemo. Anyway, the doctors encouraged us to start on Dilaudid. This narcotic was still not working. No one seemed to believe us that it was not working because it was not pain that needed drugs. The only time he felt relief was when we applied the “booty cream”. It finally got to the point to where one nurse saw his discomfort and insisted that we meet with the pain team to start a Dilaudid drip. Reluctantly we agreed to let them start on a low dose drip. It didn’t make any difference. The doctors made their rounds the next morning and said they wanted Xavier to stay on the pain drip because all BMT patients at some point are on a drip due to pain. We tried explaining how the cream was helping, but it didn’t matter. Thankfully, our nurse who was there at the time of rounds saw our situation first hand and said that she doesn’t think the doctors heard us, but she did. We explained that we didn’t think this situation called for the pain medication like they believe it did. Every child is different and we did not want him to be on pain meds just to be on pain meds cause most kids are. We did not feel that was OK. She tracked down the doctors who then sent in the pain team. Due to our persistence and knowing Xavier very well, they agreed to take Xavier off the drip as a test, and sure enough he perked up right away and was feeling so much better!! We continue to do our little routine of the “booty cream” and things just continually for better. He has been pain medication free ever since.
For myself, I do find it important to make note that while in Xavier’s case pain medication was not the right option for the type of discomfort he had, I don’t feel like anyone should feel severe pain. If we truly felt he was getting the relief he needed from the medications, we would have continued. I feel very strongly about this.
We have been dealing with increases blood pressure which the doctors were attributing to the pain. However, it could be because of one of the medications he’s currently on. It’s one of those things you just don’t know but continue to monitor closely. So far he has only had one dose of blood pressure medication so it’s not too bad.
We have been monitoring Xavier’s liver enzymes very closely. They have been quite high since chemo ended. We start to worry about more serious things like VOD which is one of the possible serious complication of the high dose chemotherapy. The good thing is that if you do have this, high liver enzymes are typically accompanied by a high bilirubin, increase liver size, and fluid retention. All of which Xavier does NOT have. We will continue to monitor closely.
Another thing we monitor daily are Xavier’s platelet and red blood cell counts. Until W’s cells decide to make their appearance (hopefully very soon), his platelets and red blood cells will only decrease. This means he will continue to get transfusions. He has gotten 2 platelet transfusions and 1 red blood cell transfusion thus far. After reading this mornings CBC (complete blood count) it looks like we’ll be getting more red blood cells tomorrow.
Big thank you to those who selflessly donate blood! Without all of your donations, many people just like Xavier would be in a very bad position. It may seem like a small thing to do, but it saves lives every day. You are making a huge difference!

There is just no way I can conclude this blog without talking about some of the non-transplant related “mishaps” that have occurred. There has always got to be a little extra drama to keep things interesting, right? Well… Sometimes less is more.
One of the main side effects of low platelet counts is the blood not clotting like it should. To the doctors amazement Xavier has been extremely active. So much so that the last couple of days he’s been taking little runs around the cancer unit. Also, the physical therapist has been taking him to the gym which he is SO excited about!! Being so active is definitely not typical for a patient that is day +14 Allo BMT. Really! So along with Xavier being incredibly active comes the increased risk of… Yes, you guessed it. Getting hurt.

He fell the other day and bruises appeared instantly in multiple places. They will not clear up until his brothers cells start to engraft. He also has a little cut and is still recovering from hitting his head on the corner of his machine. But like any tough little boy, he doesn’t mind.
So bumps and bruises we can handle, it’s part of being a kid. Waking up in the middle if the night to see your son sitting in a pool of blood is not something anyone is mentally prepared for. Yes, this really did happen. John was the one to discover it. Thankfully he got up in the middle of the night to go to the bathroom, came back, and saw it. He instantly ran out to find a nurse. It was not a situation where we were going to press the call button and wait for nurse assistance. The good news is that we immediately saw that he was not bleeding due to his central line breaking or injury. His tube broke. This is NOT supposed to happen. It was very scary. I was thankful that Xavier was so deep in sleep that he did not notice that he was covered in blood. I was able to get him cleaned up without him knowing what had really happened. We instantly worried about 2 things. One being the risk of infection due to the open line. Two being that the line that broke gets him his Tacrolimus which is a 24 hour drip to help prevent GVHD. The levels of Tacro are critical and strictly monitored. He must have been off of it for a good 4-6 hours judging by the amount of blood on the bed. Long story short, there was nothing we can do because what happened, happened. We continue diligently monitoring for infection and we get the Tacro levels back today and we just hope they are still at a therapeutic level.
So while I’ll hitting on a few more “dramatic” moments, there is just one more that happened the other night that was pretty intense. We woke up to loud screaming from the room next to us. It was so powerful in a way I just don’t know how to describe. A couple minutes later there were alarms going off and tons if people outside our room including security. We had no true idea what was going on but immediately felt for the family that would have to go through something like this, whatever the situation. The noises kept going through the night. We turned music up loud in our room  so Xavier could continue with uninterrupted sleep. Come morning things were still not settling down. Again, I felt and continue to feel for the family but new that if there was a possibility to change room, we had to take it! The nurses were definitely on board and we were able to move later that afternoon. Good thing too because they had about 20 visitors coming in and out so Xavier was not able to leave the room. We found out last night that there is still a lot of struggle with the patient but it is more of a neurological/medication thing rather than pain and the child should be ok. I was happy to hear that and absolutely wish then well. It’s always a chore to move but the good news is we have a nice view now. 🙂
John and I celebrated our 8 year anniversary together. Xavier was feeling really good that day so that was definitely the best gift ever!

I also had my Birthday and got to spend some time with Westin. That was definitely the highlight of the day. It’s REALLY very difficult on all of us not being together like we want to be. I think lately it’s been hardest on Westin. I just can’t even… It’s hard.

Brother love!
SO the next step is for Xavier’s Big Brother W’s cells to make a home and start ENGRAFTING! The doctors think it should be any day now! Xavier gets his blood drawn around midnight every day and we anxiously await his results. Can’t wait until tomorrow morning! We are Day +14 and Xavier is doing great! I can’t wait until we start talking more about gearing up to go home!!

We are finally in the pluses! We are now counting the days POST-transplant! This is basically a new phase of transplant. The high intensity chemo is complete and Xavier has received his brothers cells. The “worries”or things we look for are now different then when Xavier was receiving his 8 days of chemo.
I thought I would take the opportunity to make this more of an informational blog entry. I definitely understand that a bone marrow transplant is not something a lot of people know the fine details of, or even the broad details of the matter. I definitely wouldn’t expect that! I have been researching and learning this for over a year now and every day I learn something new. Just because Xavier has received his brothers cells and it was a beautiful and important step for us, we sill are considered early on in the process. You don’t wake up the day after transplant and boom, you are better. In fact, you will only feel worse. For a while. #cancersucks!
With Xavier’s blood counts dropping rapidly (red blood cells, white blood cells, platelets, neutrophils, ANC… virtually everything) we have a huge risk of infection. Actually his ANC (ability to fight infection) is already at zero. The doctors automatically put him on a broad spectrum antibiotic to protect him as best they can. It is our job to keep him safe from any and ALL potential germs. He has no immune system to fight things off himself. He will receive these antibiotics until his brothers cells start to engraft and his counts start to rise. His immune system is not expected to reach full working mode until about the one year mark. It should be about 50 percent when we leave the hospital.
Xavier will most likely need platelet and blood transfusions throughout the next few weeks and possibly beyond. They are letting his levels get down to a certain point and then once it reaches that threshold, they give him a transfusion. They monitor his numbers extremely closely. There is absolutely no room for error.
Due to all of the high intensity chemotherapy Xavier has received, there is a high possibility of mucositis which is the painful inflammation and ulceration of the mucous membranes lining the mouth and digestive tract. Mucositis is a common and often debilitating complication for about 85 percent of bone marrow transplant patients. Fingers crossed we are apart of the 15 percent who steers clear of the pain and discomfort. So far, so good but they continue to mentally prepare us for the possibility. Again, out fingers are crossed!
Another important thing we start to think about is the potential for Graft vs Host Disease. Very simply put, it is when the white blood cells in the graft recognize the recipient (the host) as “foreign.” The transplanted immune cells then attack the host’s body cells.
While this is a very common complication for donor bone marrow transplants, the chances of getting it are lower when using a matched sibling donor. Xavier has about a 35 percent chance of getting this. They believe if he does get GVHD, they are hopeful that it would be mild to moderate. A little bit of GVHD is considered ok because the graft will hopefully attack any lingering cancer cells that could be hiding in the marrow. So while we definitely don’t want GVHD, a tiny bit would be ok. I believe something like this could show up as early as about a week after transplant.
While GVHD continues to still be somewhat of a mystery to doctors, there are fortunately some drugs that can help prevent severe GVHD. We started one of them the day before transplant which is currently in the form of a continuous IV drip and then another we get at day 1, 3, 7 and 11. Anything we can do to cut down on the risks of this nasty disease we are totally on board. This is as far as I want to take this conversation with GVHD because there is no need to dwell on something that we quite possibly will not even be dealing with. I just think it’s important to note we are doing all we can to avoid it.
Xavier’s central line got a good tug at his chest the other day. The central line is the small, flexible tube inserted into a large vein near his heart. This is what serves as the rout for medications, fluids, and to obtain blood samples. The tug almost broke the stitch in his chest. It was very painful for him and I felt terrible. I was scared that the line may have moved out of position inside his chest. They checked it by drawing blood and thankfully it still works fine. The nurse had to put another dressing on the site which is a very uncomfortable process. It involves taking a very sticky bandaid the size of an adult hand off his little chest. But as no surprise, he new it had to be done and he did great.
As a whole, things have been going well. Some days are better than others but we keep the positivity up for sure. The doctors think he’s looking good. His liver enzymes were high the last couple of days so they are changing up one of the anti-viral antibiotics as they believe this may be to blame. We should hopefully see these levels drop to normal range in the next couple days.
To all of you writing cards or sending pictures to Xavier, thank you! He loves it and has been posting them around his room. He even got a package from the Seahawks with lots of fun Seahawks stuff in it! He was very excited!
Xavier’s big brother W went back to school and was able to celebrate the last week with his friends. He would go year round if he could!! With W now done with his bone marrow donation  and no longer in “isolation”,  for us this means we will have to make certain W is not showing any signs of being sick before he can be around any of us. I miss being with W so much! We all do! I know however that we are here doing everything in our power to get Xavier better so our little guys can play together soon!

With transplant day just a few days away, we had a lot of preparing to do! Xavier had to get through 2 more days of high intensity chemo. He did this like a champ! We even started declining some of the anti-nausea medications because he was feeling “good” and soon we decided to take him back down to just the base-line anti-nausea medication, Zofran. We spent much of our time in the hallways walking and kicking the beach ball. Without the anti-nausea medications that cause drowsiness, it was pretty much go-go all day.

Xavier has been working with the physical therapist and he thinks it is he coolest thing ever! They play basketball, pass the beach ball and many other creative games to keep him moving. They have music therapy too. The therapist came in and asked if Xavier wanted to join in with some other patients for group music. He was so excited! It was written all over his face with his cute little dimples. She came back a few minutes later and said she talked with his team of doctors and they said that would not be OK for him to as it’s too risky being around other patients. I felt so bad for him. On top of that, I was frustrated with the therapist for not checking with the doctors before inviting Xavier. Fortunately, she redeemed herself by comming in later that day and spending a lot of time playing instruments with Xavier. He had a wonderful time playing the drums and showing her what he could do on his ukulele!

Everything was great all-in-all, except for a very unfortunate and unexpected injury. Xavier made a quick move to avoid some medication and accidentally smacked his poor head on the corner of his machine. Of all things to happen… It is a pretty nice gash. We have to continue to put cream on it and keep a close eye on it but the doctors don’t seem too concerned, so I try not to be….

Xavier has been loving more than anything that his brother has been hanging out A LOT! It doesn’t matter how crummy Xavier feels, when his brother walks in that door he gets a brand new wind. Being with his brother takes his mind off of all that is going on. It’s more than anything John, myself or the doctors can do for Xavier.

In other words, W is Xavier’s best medicine. And I love it!!

W actually had a few more appointments at Seattle Cancer Care Alliance leading up to his bone marrow harvest. They needed to check his blood once again to make sure he was still in great shape for donation. Sure enough, everything looked fantastic! Couldn’t have been any better. When they were taking his blood, he thought that it was the actual marrow donation taking place. As they were putting the needle in his arm he was saying, “my bones, my bones!”  Haha, love him!

There is no doubt that it was hard on W to be pulled out of school and distanced from his friends and family for a few weeks to ensure he was healthy for donation, but it was so very worth it! Any viruses in w could have directly affected Xavier and I am so greatful we don’t have to worry about this. So very grateful.

The day before transplant is called “Rest Day”. After 8 long days of high intensity chemo, you get a break. This was perfect because we all got to celebrate John’s Birthday! The 4 of us had a great day! Both boys decorated cakes, we played games, and made things as fun as possible under the curcumstances for our special birthday boy! It was the perfect way to spend the day before transplant!

Day 0 – TRANSPLANT DAY!

Waking up transplant morning I had so many emotions running through me. This is the day we have been waiting to see for quite some time… And then some. SO beyond happy to see this day. But on the other hand, it was insanely difficult having both of my boys in the hospital. I desperately wanted to be with W, but Xavier needed me too. I new W would be in the best hands possible with John so that was incredibly comforting.

It was an early 6:15 am check-in for W at the outpatient surgery center. While Xavier was fast asleep, his big brother was prepping for his bone marrow harvest surgery. From what John described, W was just more scared than anything. He never complained or said he did not want to do it. At this point, it was very clear to W that he was doing this for his little brother and that was enough for him to be completely willing to go through something that can be quite terrifying for a young child. Or any adult for that matter!
After the surgery, the doctor had the post-op meeting with John and he let him know that the surgery went fantastic. They were able to get all the marrow they needed and only had to have 2 entry points on the back hip bones. The doctor then came up to Xavier’s room and relayed that information to me as well which I was so very appreciative of. As soon as W was awake and cleared, he was able to come up to Xavier’s room and rest there while we all waited for the cells to arrive.

Because the boys are an identical bone marrow match and the same blood type, they did not have to do any “cleaning” of the bone marrow. It got up here to the cancer unit pretty quickly but it then had to go through many, many checks and double checks before the nurse could bring it in. I was happy that we had a nurse that we like and are comfortable with. This is a BIG deal! She said this was her 6th transplant, 2nd being a sibling donor.

After it was all hooked up, Xavier wanted W to do the honors of pushing the start button. That was very nice of Xavier considering  pushing buttons is by far one of the coolest things he gets to do around here! I would love to tell you this super incredible story about how cool the actual transplant was, but it honestly was very uneventful. It is basically just like getting a blood transfusion. It went over about a 4 hour period.

Everything went very smoothly. Complications during the actual process of receiving cells are rare, but it does happen. He was watched incredibly closely throughout the whole day, more so than normal.

He didn’t mind though…

It is important to note that while the transplant itself was a major milestone, we are still no where near being out of the woods. We won’t truly be able to take a deep breath until the day the doctor comes in to say that Xavier has engraftment. Until then we hold our breath. It could be as little as 10 or as much as a few weeks. We just don’t know.

At the end of the day, John and I both felt a calming relief knowing that W’s part in this process was complete. Minus of course the dreaded bandage removal the next day… Again, we still have a very long road ahead, but we are moving forward.  John and I continue to feed off of Xavier’s incredible strength and courage throughout this process. After today, we are just that much closer to our beautiful sunrise…

Day -7

Day -6

Last day of our first of two chemo’s! It was definitely a better day for Xavier. The best part… Having lunch and play time with his big brother W! He brought us dinner the night before, but got to stay for a long time today!! The boys had a great time. Xavier got to show his big bro his room and all of the cool machines. He even got to show him how fast he can ride his bike around the halls. W was drilling the nurses with so many questions. What is that? Why is that? Inquisitive like his Dad I guess. You’ll never know if you don’t ask the questions, right? We LOVE W and want him here with us while Xavier still has a bit of an immune system, but you could tell his high energy was exceeding what this hospital room had to offer. He did do amazing though.

The boys were so happy to see each other. There is nothing like the love and bond between two brothers. Way deeper than they can even understand right now…

Day -5

It was the first day of the second high intensity chemo. It’s called Cytoxin and it’s supposed to be even more intense than the first. This chemo is just given one time a day at 9am for the duration of one hour. While taking this drug Xavier needs to be weighed twice a day, blood tests twice a day, and pee every 2 hours. This is all over a 4 day period.

The morning started out great! Xavier was feeling good. We sat at the window and ate breakfast in the sun. We’ll take the vitamin D in whatever way we can get it… And then to top it all off, W stopped by again for a little visit! The boys had a great time playing and just being in each others company.

Not 5 minutes after W left Xavier was sitting on my lap and he became extremely ill throwing up. So much so, his whole face became completely covered in broken blood vessels. Don’t get me wrong, I came prepared knowing full well Xavier would be getting sick, but I was not prepared to see his face immediately become covered in red dots after doing so. The nurse came in, saw his face, and got the doctor. The doctor was surprised, but just attributed the broken blood vessels to how violently he was getting sick. I was so glad W was not there to witness everything that went down, or up for that matter.

It took a while for us to get his nausea under control. All of the options cause drowsiness but at this point, we all agreed that it’s better to sleep through the nausea then be awake struggling with it. By night he was feeling good and slept like a baby aside from being woken up to pee every two hours.

Day -4

Yet another day on the yucky chemo. I knew that we had found some anti-nausea medications the day before that were working, but the catch is that the Cytoxen keeps compounding over the 4 days so each day it gets more intense. This means the nausea will keep getting worse. We added yet another drug to help with the nausea after his 9AM chemo dose and it knocked him out. In all honesty, he really did need the sleep. He woke up refreshed and doing great.

He got on his bike for a while going as fast as the first day we had arrived. Then he started playing basketball with John in the hallway until the physical therapist came along and got him to do some additional activities. So yeah, he had a very active afternoon.

After walking and biking through the halls so much over the last week with speed racer Xavier, John noticed that there was a little girl a couple doors down that was there by herself most of the day with quite a few nurses and doctors constantly in and out of her room. It was apparent at quick glance that her room was completely bare with no toys like most of the other young children’s rooms here at the hospital. Our nurse was assigned to both Xavier and this other little girl so John asked a couple questions about the girl in which the nurse answered very delicately because they are not allowed to go into detail about other patience.

Later in the day the nausea caught up with Xavier once again and he just felt extremely yucky . That’s the best way to describe it. I just hate that he has to feel this way. All he wants is for us to hold him close.

One a funny – so very not funny note, Xavier threw up right in John’s face before bed after taking his oral medications. If John didn’t have his mouth closed… yikes. Now I know your asking yourself how this is actually funny. Well john had just rejected my attempts to help and to give him a bucket and from the angle I was standing, all I could see was Johns face and mouth get covered. It was one of those incredibly inappropriate times to laugh, like at a wedding, but I did. Sometimes when you are in a serious situation, it’s OK to use humor and have a chuckle once in a while.

Xavier asks daily when we are going to go home. We tell him that we are going home after we get him better. That we are here with him and we are all in this together. He just simply says without fail, “OK Mommy” or “OK Daddy”.

He is SO strong. It’s truly inspiring.

Here’s to a peaceful night and only 2 more days left of Chemo!

——-

We’ve had a lot of people reach out and ask how they can help… And I have an idea!

Xavier has this little mailbox here at the hospital that he loves to play with. He has cute little pretend postcards he plays with all the time. The other day I put a real letter in there for him and he thought it was so special!
It got me to thinking… How cool would that be for Xavier to check his mailbox and receive letters to open from some of his friends!
I’m sure it would brighten his day to get a little something to take his mind off of what is going on around him.
That being said, we’d definitely would want it to be something super positive and nothing about him being sick, but about something fun. Positive words if encouragement would be ok. Drawing or coloring a picture would be very neat! He’s got lots of white walls around him that he’d be excited to fill with some color.
If you are interested, just pop me a message or email and I can send you our home address if you don’t already have it. Since Xavier’s big brother Westin is at home I can put him in charge of collecting the mail for his brother. He would think that was pretty special to be able to do something nice for his brother too!
A cute way to address it would be:
Xavier c/o Westin Makus

Thanks again for all of your continued support. We can’t thank you enough!

Monday started with boys day at the barber shop! They let me tag along too 🙂 All three boys got their cuts at the same time. We knew Xavier would be getting the closest buzz possible. I felt pretty well adjusted to the idea. I would much rather get the buzz than watch his hair slowly fall out from the chemo. Not going to lie, John and I both had tears in our eyes. Not because of the loss of Xavier ‘s hair, but because of the look on both of our boys faces. No words were necessary to know that they knew this was not a typical hair cut. As difficult as this was, I can’t help but imagine how hard it would be on a little girl…

We continue to miss Xavier’s brother W like crazy! Xavier keeps asking when brother is going to visit. I am glad that we do get to be honest and say “soon” because his brother will be brought to our room after his marrow donation on the 12th. We also may bring him to the hospital on the 11th for John’s birthday.

All considered, things are going great so far. Xavier has endured so much all ready and he’s done incredible. I know that they anticipate things getting more difficult for us, but we’ll take it one day at a time. Like the doctors said on their rounds today, he looks “perfect”. He does, and I’ll just look forward to hearing that again tomorrow.