Little Big Hero (english)

Liam fought his last battle in the last days and he won. He beat cancer, but as Liam, the Car-T Cells just kept on fighting. His body was just too fragile after all his countless battles. He showed one more time how strong he was, when he came back yesterday after a very tough night and morning. He showed us all once again how strong his will to live is, but in the evening he just got so much sicker and he was able to fall asleep forever. Liam’s big big heart stopped beating after 1 1/2 years of fighting and more so  inspiring people he met along the way. He will always be our Little Big Hero.

 

 

Chemo, septic shock, dialysis…

It was Sunday February 25. Liam was doing great and was even able to come off the oxygen, which was a very big step and required in order to go ahead with the nexts steps. He’s been on oxygen for the past 4 weeks. In order to receive the Car-T Cells, he needed chemotherapy to free space for the cells. Their goal was to give three days of chemo, Sunday, Monday and Tuesday.

So he received his first round of chemo Sunday evening. He was doing great the whole day. Our new nurse Emily was great, even Liam was drawn to her right away. We got Liam out of bed for the first time in a while.

At night he spiked a fever and got warmer every hour. They gave him Tylenol to lower the fever, but that didn’t really help. During the day he was really thirsty, but because they were afraid, that the water he was drinking could end up in his lungs, he was only allowed to have sponges with water.

In the evening he got the next round of chemo, this time two different ones. He was doing ok, until his saturation quickly droped and so did his blood pressure. From  115/60 (68) to 80/40 (50) which was really low for Liam. They were going to watch it over night. They didn’t really know where it was coming from. In the next few hours his blood pressure was stabilizing, but it took him some time, it was a stressful night. We only slept for about two hours and Liam also didn’t really get the chance to relax.

So Liam was also really puffy again and his blood vessels were leaking really bad. Good that he had his drains in place, they gave him transfusion after tranfusion and it basically drained right away. He was due for his last round of chemo, part of the chemo was lots of fluids running before and after, but with Liam’s condition and with his white blood cells being zero, they decided to cancel the chemo. That was a big relief. We took him out of bed again, so he could relax in Mom’s lap.

In the evening we had the same night shift nurse as the days before, Mitchell. Liam kept him on his toes, but he was doing a great job. So the night was even more stressful and eventful than the the night before. His blood pressure got low again and they started to get worried as it wouldn’t go up, even when they gave him fluid boluses. They tried it with epinephrine and norepinephrine drips, but it wouldn’t help. So they had to try with steroids, which meant that he couldn’t get the cells for a week, but at that time they just wanted to stabilize him. After some time, the blood pressure slowly went up. In the meantime they put in a arterial line to measure his blood pressure constantly.

In the mornig Liam was feeling really unconfortable and was in a lot of pain. They gave him strong pain medication which helped. They were still very worried, as he didn’t pee and his labs didn’t look to good. He was also breathing really fast and was put back on the HighFlow. As Liam was in a really bad place at that time, they already thought of intubating him again, our new Nurse Sol urged them to wait and give him time to calm down, as she thought he was just really unconfortable and in a lot of stress. After several nights of no sleep, he was finally able to rest and his breathing got a lot better, as Sol predictet. She gave us a lot of comfort and with her being there, we even felt ok to take a nap, as we were also exhausted.

We met some new doctors from nephrology, the kidney doctors. Liam’s kidneys seemed to not work properly or not at all, which can become dangerous pretty fast if the potassium level is climbing up. The hope was, that his kidneys are only “angry” and not permanently damaged. They decided to put him on the dialysis machine CRRT.

With the day continuing they were able to go down on the blood pressure medication which was a great sign. When they had to change his dressing, David from Music Therapy came by to play and distract Liam. David and Eveyln did and are still doing an awesome job coordinating with the nurses. Liam is just appreciating the music so much.

On the same day, Liam also got a new visitor from Switzerland, his godmother arrived. Unfortunately he didn’t realize as he was sleeping all day.

As Liam still didn’t pee till the evening they decided to go ahead with the dialysis. His platelets were low once again, they first had to give him another transfusion. The procedure was scheduled for 5pm, but ended up being at 6.30pm. They had to intubate him for the procedure, which of course worried us after the events of the 18th. They did a great job and everything went well. Another anxious moment was, when they put him on the CRRT dialysis machine. You can react to the plastic of the tubes and your blood pressure can drop. He was off the blood pressure medication and his blood pressure was stable, but still at the low end. They said they hardly every had a smoother process of going on the CRRT. That was a big relief and we were all able to get a good night sleep.

The night went well, but Liam was still in pain the next day, we suspected it to be caused by mucositis. A quick look into his mouth confirmed that. Our new Nurse was Kennon, she played some Ukulele for Liam several times before, we basicaly got two in one, a great caring experienced nurse and a musician. 🙂

Liam was pretty relaxed he was laying beneath a warming blanket, he looked very comfortable. At that time Liam had a lot of lines and tubes in place, 7 to be exact, including his G-Tube.

We were all watching over him.

As Liam was a bit tense when physio therapy came, Kennon tried to relax him with some music.

The team was doing everything in their power to make Liam and us feel comfortable.

We had Ali as the night shift nurse, she was just recently in Switzerland and loved it, especially the chocolate. She did a great job and made us feel very comfortable. Liam even peed in the evening, which was great, it meant his kidneys were still working, a step in the right direction.

At night Liam was still in a lot of pain, we mentioned that in rounds and they ordered a pain medicine drip, that always helped in Switzerland.

Music therapy came by again, Evelyn was really excited when she found out, that I started playing the Ukulele, later she stopped by again and brought me some songs and gave me some pointers.

People were constantly popping in just to say hi and ask us how we were doing, we really appreciated it and it was a great distraction. Dr. Tom also came by frequently and checked on Liam. Great thing about him was, that he wasn’t only great on the medical side, but also on the social. 🙂 We just enjoyed talking to him. Overall we had a great team of  doctors around us, very caring.

Liam had another drop in saturation and blood pressure, but recovered quickly, they didn’t really know what caused it. After dressing change he was really awake for the first time in a while, very alert too. He even wanted to look at some books, after that he was also in for a movie, that really cheered us up. Liam was still very puffy.

What also really lifted our spirits were pictures from Switzerland, the local football club (and with football i mean the reall football :)) created a heart in the snow for Liam at practice and before their game they thought of something else. We really appreciated it!

The next day we had Sol as our Nurse again, she’s great, because she really brings her own ideas to the table on rounds and isn’t afraid of disagreeing with the doctors. His pericardial and belly drain were slowly putting out less every day.

I used my newly aquired skills to entertain Liam and he seemed to like it. Stephanie was reading books to him one after another.

It was also time for another Echo, just to follow up and see if the drain was still in place.

He still needed a lot transfusions, platelets, red blood, plasma you name it. Because Liam was doing so well breathing-wise, they wanted to try turning down the HighFlow from 14 to 10 Liters, quite the jump, but they wanted to push him a little bit, he did great on 10 Liters.

Tiffany was out getting her hair done, when she came back, Grandma, Stephanie and I met Matt and Katie in downtown Seattle, we wanted to see the Amazon Go store, we saw it, but it’s closed on weekends. While we were downtown, we thought we can at least go to the Space Needle. The weather was perfect and it was great to get out of the hospital for once.

In the meantime Matt and Katie visited Liam at the hospital. Liam had a better day and wasn’t just sleeping the whole day anymore.

During the night, they were able to go down further with the HighFlow to 8 Liters. After rounds they put him down to 6 Liters and he was fine. He was improving one day at time.

Stephanie was also stopping by one last time before she was leaving for the airport. Liam enjoyed her reading a book to him. We really enjoyed Stephanie’s company and truly appreciated her coming all the way to Seattle.

Matt was providing breakfast from the French bakery around the corner of their house, amazing stuff.

Liam was more relaxed and looked less puffy and also did great on the 6 Liters of HighFlow.

Today was opening day for the Seattle Sounders and Matt treated Grandpa and me with some amazing seats at the stadium. The weather was pretty crazy, we had sunshine, rain, hail all in the course of 90 minutes. We really enjoyed the game, there was even free food! 🙂

Tiffany and Grandma were looking after Liam, for some reason Dr. Tom was stopping by more frequently than usual, I wonder if it was, because of the basketball game that was on.

In the evening the decided to switch out his bed, he was still on a floor bed and not on an ICU one and they weren’t able to weigh him on the floor bed. Switching beds out is pretty complicated with all the lines.

After switching beds, they went down on the HighFlow to 4 Liter, which is almost nothing. Liam spread some good vibes when he peed again. 🙂

During the night we got a visitor while we were sleeping, she left a note on the board, it was Anna from upstairs, she visits us frequently, she’s such a kind-hearted soul. During the week we got visited from so many former nurses, it’s just amazing how they are supporting us.

Another week gone by. It’s hard to keep up with the English blog as there’s so much going on every day, but I’ll catch up.

 

 

Cardiac arrest, recovery…

So because of the pericardial drain we had to stay in the Intensive Care Unit, as they can handle the drain and have more staff to monitor it. It turned out to be the best place to be at. Saturday morning, Liam was doing fine, but didn’t get that relieve he got from the drain last time. He was currently at 4 Liters of pressure on the High Flow machine, which helped him breathe. They also found out, that he has some blood in his urine, but nothing really that concerned them much, urology said, he has more serious problems than that. During the day his breathing rate got faster so they increased the pressure on the High Flow to 6 Liters, which helped for a while. The westher, for once, was beautiful, which gave Tiffany the chance to go out to catch some fresh air, we both haven’t been out of the hospital for a while now. I got my turn after she returned as we didn’t want to leave Liam without at least one of us. My parents supported us of course and were in the hospital all day long too.

Liam’s belly seemd to get bigger and so his breathing got worth, the increased the machine further to 8 Liters. The told us Liam was probably leaking from his blood vessels into his tissue because of all the inflammation going on in his body. That’s why the belly was getting bigger. The day before we jokingly said why they wouldn’t just drain the belly. That was becoming a reality as it really hindered his breathing. They said they would wait until Sunday morning, as they wanted the day shift to be around unless of course things would get much worse. They also had to gather some information regarding the Car-T study and whether they were able to leave the drain in and still be eligible. He was doing ok for now.

In the evening Matt and Katie visited us and brought the most delicious food, baby back ribs, mac & cheese and buffalo wing popcorn, it was amazing. We really enjoyed the company. Meanwhile Liam was sleeping.

so as the night progressed his condition got from bad to worse breathing-wise. His heart rate was 170, his blood pressure was high and his breathing rate was in the sixties. They tried to help him increasing the HighFlow, in the end it was on 20 Liter which is a lot for such a small kid, but he really struggled breathing. Pain medicine helped in the early stages of the night, but not as the night progressed. At around six they decided to call in interventional radiology to do the procedure in the ICU. First they wanted to put Liam on the mask, but quickly realized that won’t be enough to support him as they checked his blood gas levels which changed their minds and they decided to intubate him.

They were really concerned how he was breathing and wanted to relieve him of working so hard. To intubate, they had to sedate him, as Liam fell asleep we left the room and waited in the family room/kitchen. After a couple of minutes the attending doctor came and told us everything went well and he is breathing fine and is relaxed. They were waiting on the doctors to do the procedure. We just had a funny feeling after she left and some minutes later we heard an announcement we won’t ever forget. It was February 18th.

Code Green, Forest A, Level 6, before they finished announcing we really hoped it wouldn’t be Liam’s Room 322. She continued the announcement, Room 322. Seconds later people were storming in from everywhere, one doctor shouted, I don’t know what’s happening, but we’ll let you know, as she ran by. We had no idea what was going on and it’s still hard just thinking and writing about it.

Some people were casually walking back the other way and we didn’t know what that meant, was that good, was that bad?! The Attending Doctor came back and told us, that we should follow her back to Liam’s room, Liam’s heart had stopped. When we turned the corner there were dozens of people in and around Liam’s room. When we arrived at his room we saw someone performing CPR on top of him. We were petrified. We were helpless and couldn’t do anything except wait and hope, that his heart starts to beat again. There was already a social worker there waiting for us, but we didn’t feel like talking, we just wanted someone to tell us that he’s going to be fine. After a while, 13 minutes to be exact, the Attending approached us again and told us that they have a heartbeat again and that his saturation is fine again. What a relief! But suddenly all this questions come up, will he be fine again, what about his brain, did it get oxygen during CPR? They couldn’t really tell us at this point, but said they started CPR right away, which is very important. During CPR they put the drain in his belly which released the pressure, which was probably one problem, that was causing the arrest. They immediately drained over one liter from his belly, which is quite a lot for such a small kid. Every couple of minutes someone updated us on his condition. They immediately did an Echo of his heart and X-Ray of his lungs, both looked fine. As time went by more and more people were leaving, which was a good sign. At that point we were able to go back into Liam’s room. He looked like a completely different child, all puffed up and a lot of blood everywhere. But he was doing ok, that was the most important thing.

The started the post cardiac arrest protocol right away. They put him on a cooling blanket, gave him medicine to keep fevers away, put in an arterial line to messure his blood pressure and draw labs, put on an EEG to messure his brain streams and lots of other things. After about an hour or two he was already opening his eyes again and was responding to us and was even able to answer questions with nodding. They were stunned, that he was already doing so good. They continued to be impressed by Liam over the next days and how fast he was recovering. First they thought his brain waves were a bit slow, but they more important sign was, that he was very well responding to us and in the end the MRI of the brain showed no abnormalities. That was another very big relief. He once again showed us all that he is a big fighter.

His breating was also improving and after a couple of days they were able to remove his breathing tube again.

All the staff was very supportive and caring and did an awesome job handling the situation and still have time to think about us. My parents were also always by our side and Matt and Katie came by frequently to chear us up.

 

During that time, Liam’s godfather was visiting us from Switzerland, as soon as he heard, we were going to Seattle for the treatment, back in Novemerb, he promised to visit us. A true friend. He also got me into playing the ukulele.

Tiffany’s mom and her best friend Corinne also decided to visit us after what happend, just to have familiar faces around was helping a lot.

Liam was getting better and better every day and was even in the mood to smile again, which always makes the sun shine for us.

So a week after he had the cardiac arrest, he was doing really well again, much better then we could have wished for.

That was week ten… Still a bit behind, but there’s so much going on, it’s hard to keep up.

Back up and down…

Monday after the Super Bowl we were able to go back to the Oncology Floor on the 8th level. He was doing much better and was also in a good mood.

In the coming days he was improving a little bit every day. He was still on the High Flow machine, but was able to come down from 8 Liters pressure to 4 Liters. Liam still had to throw up almost every day, probably due to mucus which was bothering him, every time he threw up, he felt much better after. He was better all-around. He kind of fell in love a little bit with his new nurse Anna, who was doing a great job and also took time to play with Liam to break the ice. 🙂

They also started his feeds through his G-Tube again and were constantly increasing it, until he was on a good level.

We have already been here more than 50 days here and mostly in the hospital, we are very thankful to my employer Swiss Life. They make it possible, that I can fully focus on Liam’s therapy and be there for him and Tiffany. They are constantly supporting us.

As he had still problems breathing, they wanted to do an Echo again, to check the fluid around his heart. It showed that is has accumulated quite a big amount, so they decided to drain it. They finally did that on Tuesday, first they wanted to leave the drain in, but as there was no room in the ICU they had to pull it. The procedure was going really well and the drained 250ml of fluid from around his heart, he was really releived after and like a completely different child, even the nurse said so. But as the day went by he seemed to get more bottered again. So we had a feeling the fluid was coming back, one of the disadvantages of pulling the tube after the drain.

The next day Liam was pretty tired and didn’t feel like moving much, this was until we decided to play some baseball in his room. He got really excited and was suddenly in a great mood. We tried to use that and asked him, if he wanted to ride a bike outside the room. Remember he was still on oxygen and on the monitor. But nonetheless he liked the idea and agreed. He was sceptical at first, but once we were rolling and his doll was hooked up aswell, he liked it. We thought he would get tired after a minute, but he wanted ride like 20 laps, which is about 45 minutes. That really filled us with joy!

he had a bit of a tougher night, his blood pressure was a bit high and his saturation dropped from time to time. During the day physiotherapy came by, but Liam didn’t really feel like moving much. At least he was able to sit for a while. The are doing a really great job motivating him playfully.

Yui, our nurse, was just wonderful and doing a great job keeping our spirits up.

They did another Echo and felt like it’s time to drain the fluid from around the heart AGAIN, if they just would have let the drain in. So the procedure was schedule for Friday morning. This time they would let the drain in and would solve the bed issue in the ICU, it would later turn out, that the ICU would be the safest place to be for him.

So Friday morning we went down to interventional radiology, the same nurses transported us down to the procedure room, Yui also came along and which was great for Liam and us.

The procedure is pretty straight forward, they stick a little needle in below the breastbone and let the fluid drain. Again it immediately drained 135ml which is a lot in just 3 days. My parents and I gathered our belongings as we had to move down to the ICU. Liam and Tiffany had to wait in the recovery room until the bed was ready. Nothing new to us and we settled pretty fast. Liam was doing ok, the belly was just getting bigger and that really troubled him and especially didn’t help him breath easy. So much for week nine, much more to follow from last week, but in a separate post. I was actually writing most of this post last Saturday, but things just dramatically changed that evening, that’s why it took another week to post it. So stay tuned.

Inpatient, ICU…

Monday – Sunday

On Monday he looked much better and wasn’t as puffy anymore. He got a teddy bear from our friends in Switzerland, which was exciting for him. As it was registered mail and we weren’t at home, Matt got it for us at the post office.

Liam was due for another echo and ultrasound. So after a new doctor showed up, de cardiologist. He wanted to have a look at Liam and see him first hand. They way Liam was breathing was concerning him, the fluids around his heart and lungs didn’t help. One idea was draining the fluids with a small catheter. So he was going to talk to the team.

As they were talking about transferin Liam to the ICU before, it was pretty clear to us, what’s going to happen.

In the afternoon they called in a rapid response team, which basically just calls in all the doctors for a pow wow. They decided to move Liam to the ICU on the 6th floor. He would be better monitored and they could support him breath better with a mask.

So it was time to move.

It was already 6pm when we finally got to our new room in the ICU. They put a scuba like mask on his face to help him breath. The pressure of the mask helped filling his lungs. Because of his big belly he wasn’t able to do this on his own.

We didn’t get much sleep that night and the doctor making their rounds at 8am, so we must have looked like zombies. The doctors said, that the goal is to support Liam with his breathing and get the surplus fluids out of his body. He was tolerating the mask pretty well and the pressure helped him a lot and he was able to get some much needed rest. My parents got back to Seattle on Tuesday, which helps a lot.

He would have gotten the T-Cells by now, but of course it was put on hold.

Tuesday night he was waking up frequently and would freak out a little bit, because of his mask, I would probably too if my face was covered with that thing.

We had one of the nicest nurses on Wednesday, she would go above and beyond for Liam. Because Liam still got his nose tube, he wasn’t able to wear the mask which would only cover his nose. Or so we all thought, but Haayoung, our nurse, tried everything to get Liam off the scuba mask and she came up with a plan. She talked to the respiratory nurse and they were able to seal the nose mask properly. So Liam was able to lose the scuba mask, which made him really happy. It was a lot less invasive and still helped him breathe the way it was supposed to.

The night was a bit tiring again for Tiffany and me, but only because we had to change his diaper a lot which was great, because that meant his bowel was working.

The doctors were happy with his progress and the nose mask was working great for him. Because of that, they reduced the pressure helping Liam breathe and he was doing great with the new setting. Again we had a great nurse in Cara on Thurday. She also was supporting Liam in every way she could.

As it was the first day in February we had to move to another apartment, Katie and my parents helped move all our stuff, which was quite a lot. The new place is great, we just can’t really enjoy it right now, as we are at the hospital day and night.

Cara was able to get music therapy to come and play some music for Liam, which he really enjoyed a lot.

Liam even had the desire to watch some cartoons, which is always a good sign.

The night was going pretty well and Liam was doing better. So the doctors decided to put him on the High Flow machine, which is a nose cannula which also pushes air down his nose. They were going to put him on it for two hours and see how he handles it. Meanwhile Cara talked to Children Life Care to get some toys for Liam. They brought a whole box of toys.

Liam was doing really good on the High Flow machine so they let him on it. He was in a playful mood and was also allow to have some sips of water.

The night was again pretty quiet and he was in a great mood in the mornig.

They were happy with his condition and recuded the pressure on the High Flow machine from 10 to 8 liters. He was handling it really well. His belly was soft, but still a little big and his weight is also still a bit higher than usual.

Matt was visiting us again at the hospital which is always nice. 🙂 Because Liam was doing so good, we decided that one of us should get out of the hospital. As I was going to watch the Super Bowl at Matt and Katie’s house on Sunday, it was Tiffany’s turn on Saturday. My mom and her went to the Northgate Shopping Mall. My dad was staying with Liam and me in the mean time. He slept a lot through the day. When he woke up he was pretty active and joyful.

The oncology doctors came by and informed us about the further steps. It is planed that Liam will get another dose of chemo and depending on his condition will get the Car-T cells after. Hopefully in this coming week.

We had another good night and Liam was able to stay on the 8 liters of pressure over night. His belly is still big and makes him work a little hard to fill his lungs on his own, so he still needed to be on the High Flow, it just takes time. Because his cells are low, he needs blood from time to time, so they gave him some today.

Today he was in the mood to watch his favourite cartoon again, Zootopia. He watches it at least once a day. 🙂 Overall he’s doing pretty good, but as long as he has to be on the High Flow he needs to stay in the ICU.

My parents stayed with Tiffany and Liam, as I was picked up by Matt to go to their house to watch the Super Bowl. It was a great expirience to attend an authentic Super Bowl party. 🙂

When I came back, Liam had some stomach pain due to air in his belly, but the nurse helped him by venting his belly through his g-tube.

Now it’s time to go to sleep and we’ll see what tomorrow brings.

Enjoing time with grandparents, Pike Place Market, inpatient…

It’s been a busy and exhausting week.

Friday

After filming on Thursday, Friday was a much calmer day and we only had to go to Children’s for a dressing change. After we went to the Seattle Premium Outlet Mall up north in Tulalip. Liam enjoyed shopping some Polo shirts. After a quick nap, he got excited when he saw Mickey Mouse in his car.

Saturday

Saturday we were on the hunt for pancakes, but the place we wanted to go was too crowded, so we ended up in EUREKA! for breakfast, but no pancakes.

To satisfy his craving for pancakes we stopped at QFC and bought some ready made pancake mix. He really enjoyed them and they tasted good.

In the evening Katie and Matt came by and brought Chinese food. We enjoyed the evening together and the plan was to leave Liam at home with grandma and grandpa, but because he didn’t feel so well, Tiffany stayed home with grandma and grandpa and I went out for a drink with Katie and Matt. We had a great time.

Sunday

We had to be at the hospital at 9 am. First labs and while we waited for the results we had some great breakfast at the canteen.

He needed platelets after and while they were being prepared, he entertained the nurses and received some stickers as reward. He also showed off his new look.

In the afternoon we went to the Brooks headquarter to buy Tiffany some new running shoes, as she seems to wanting to get ready for the next olympic summer games. 😉

Monday

We would have had the day off, but Liam didn’t feel that well, had a rough night and he was on the edge of a fever, so we let the study team know and they wanted to see Liam. They put him on antibiotics and mentioned that his cancer is traceable in his blood again. But he was due for chemo on Wednesday. After we went to Pike Market Place as we to go for a long time. Great place with all the fresh things you can imagine.

Tuesday

Liam was very tired from all the medication and we decided it’s better for him to stay home. So Liam and I stayed home, he slept through the whole day. Tiffany and her parents went to the Northgate Mall. Grandma made dinner which we really enjoyed.

Wednesday-Sunday

Wednesday turned out to be a much longer day than expected. We went to the hospital for a bone marrow puncture to check his cancer cells. Further he received chemotherapy. Because his oxygen saturation was low after the anesthesia. So they wanted to have an eye on him overnight, so we were admited. He was still in very good shape.

The saturation got better over night, but he got a fever and if you get a fever you have to stay 48 hours without being above 38 Celsius. In the mornig he had to throw up and they were a bit worried about that, so they ordered a CT scan and a X-Ray. Both showed that there is a blockage in his bowel. The team was afraid that it could turn into a full blockage or that the bowel stopps being supplied with blood. That’s when the surgeons came into play. They told us that there are two options, wait it out or operate. They didn’t know what was causing the blockage, is it scar tissue, is it a twist in the bowel. So they were very cautious. Operating on someone with active leukemia is not something you want to unless you really have to. Your cells are so low, that the wound healing is very slow. So over the next days Liam had numerous X-rays and ultrasounds. And it looked better and better over time. So the surgeons backed off and were pretty happy with his bowel. Yesterday he had another X-ray which assured them, that there no blockage anymore. But Liam had now other problems, his electrolytes were very high Friday night, towards the mornig they got better as they flushed him with a lot of fluids. By the evening we had the problem, that the electrolytes were to low. Which is better as you can supplement it. So he got lots of fluids during the night, we warned them, that he will be very puffy in the morning, but they were concerned about his electrolytes. There is a mediaction which helps you pee, but they were afraid, that he will pee out the electrolytes he needs. So he was very puffy this morning and got puffier throughout the day. We stressed that this is something, that worries us and our nurse was very helpful and shared our concerns with the doctors and then he got the mediaction which helped him a lot. He is still on oxygen, but very little, he just needs that little bump of air. We hope he improves further and hopefully is a little fitter tomorrow, as he slept the whole day. They are taking very good care of us and are watching Liam very closely.

Today Tiffany’s parents left after 10 days and will be missed dearly. Until Wednesday they got to spend a lot of time with him, which is great.

After they left, we got some other visitors. Katie and Matt stopped by and brought us lunch, which was delicious. Time was flying. They are just awesome and help us on everything they can. They are just there if we need them. We are very lucky to have them as our friends.

So, hopefully the coming days will be less thrilling and stressing and were are able to continue the treatment we are here for.

Bainbridge Island, Grandparents, Swiss Television…

Friday

Another week has gone by and a lot has happend. On Friday we only had a short visit at the Clinic. Checking Liam’s blood levels and a dressing change for his Hickman line. He still very much enjoys his milk foam, we got him a whole cup of it.

After the visit we had the afternoon off and walked to Magnuson Park, which is about 2.5 miles away from home. Unfortunately it started raining once we got there, so only got a glimpse of it’s beauty.

Weekend

Saturday we had the pleasure to spend the day with Katie and Matt. We got to know them through Paul and Nancy from Heritage (Katie’s parents). They picked us up at noon and even had a car seat installed for Liam. After a 30 minute ferry ride we arrived on Bainbridge Island. We got to experience the diversity of Bloedel Reserve and nature at it’s best. We really enjoyed getting out of the University Distrcit for once. We were very lucky to get such nice weather.

We ended the day with a nice dinner at Cactus where they served some delicious Mexican food.

It was a great day with even better company.

Sunday Liam needed another platelet transfusion to fuel his storage for a couple of days. The weather was even better than on Saturday, so we went out to explore the Union Bay Natural Area right around the corner. We even got to see Mount Rainier. Liam was in a great mood and walked for quite a bit.

Monday

As Liam was not only low on platelets, but also on red blood cells, he needed additional transfusion. This usually takes up to 4 hours, but they were well prepared at the hospital and were ready to go as we arrived. It was fine with Liam, as he had his reading material with him.

In the afternoon Tiffany’s bike finally arrived and we just had to assemble her bike and Liam’s trailer. Unfortunately we didn’t have the right pump, so we had to go out and buy the right one, so we had to postpone our first bike ride. Liam was very helpful though.

Tuesday

As Monday was Martin Luther King Day and the hospital was only open for urgent matters, the clinic was very crowded. We had labs again and bridged the waiting time with breakfast at the canteen. His blood levels were fine, so we were able to go home again.

After a quick Lunch at St. Helen’s Cafe and Liam’s naptime we went out for our first bike ride. We weren’t sure how much Liam would enjoy it, but we let the picture speak for itself.

Wednesday

Liam was very excited as he was awaiting visitors from Switzerland. Tiffany’s parents Uschi and Reto arrived in the afternoon.

A full house again, which we very much enjoy. We showed them our favourite spot in the University Village, Joey. Great food and atmosphere, although Liam didn’t get to experience it as much.

Thursday

Today was a very eventful day. We got visited from Jacqueline, a filmmaker from Swiss National Television. She wanted to follow up on his story, as they already filmed us right before we left for Seattle. She accompanied us to the hospital and followed us on our hospital routine. We also met with Dr. Gardner, she updated us on the status of the cells and the plan for the following weeks. Liam is scheduled to get his T-cell infusion on January 31 and will beforehand get chemotherapy for four days. They are pleased with his current condition. He even got a sneak peak at the recorded material. They are making a documentary about the new treatment. We hope this helps making the treatment known in Switzerland and make it possible for others to get the treatment in their home country.

We hope you enjoyed this short update.

Best wishes from the Little Big Hero team 😉

Liam’s american friends or as we like to call them… Liam’s Legion

So I was asked to post english updates on here, which I will happily provide. I will try to post weekly upates in english.

Liam relapsed in November after a successful bone marrow transplant in July. To lower his leukemia cells he got chemotherapy in November in Zurich’s Kinderspital. After 3 weeks at the hospital we flew directly to Seattle. We’ve been here since 12/19/17. Why? To enroll Liam in the Plat 02 study at Seattle Children’s. For more information on the study, see the link below:

http://www.seattlechildrens.org/clinics-programs/cancer/research-and-clinical-trials/t-cell-therapy-leukemia/

We’ve had daily visits at the hospital until Monday, now we have to go every other day for now. He received two rounds of chemotherapy in the last two weeks. On the 28th he had his apheresis where they took his T-cells. Now we have to wait for the cells to be reprogrammed and grown. If everything goes to plan they should be able to infuse the cells by end of January or beginning of February. That’s when he could and almost certainly will encounter side effects as his body will go through a complex process. So now we are waiting on the cells and he is monitored closely by the doctors every other day. He needs platelets transfusions at least twice a week as he is not able to produce it on his own or not fast enough at the moment.

Right now he is doing really well and enjoying life outside the hospital. Today we were out shopping some new clothes for him and a bike helmet as we have bought a bike trailer.

He also picked up some english words as please, bye bye, thank you and others.

Tiffany and I are happy to be here as this is the best option for Liam and we are convinced this is the right way. We feel really comfortable in Seattle and the staff at the hospital is extremly kind and competent.

That’s it for now.

One more thing, thank you for following the blog although you didn’t understand a single word. 🙂