It’s been a quiet couple days here at the hospital without a lot of new information to report. Apologies for any concern the gap in updates may have caused folks. I can only write so many “no update” posts before it gets stale lol. Luckily we have seen some new developments that we are happy to share!

With Christmas just a few days away the hospital is working overtime to try and brighten things for the kids who are here. It really does show that beyond just treating patients, they do care about the children. We are very happy to have brought Cristian here for that fact. As a result Cristian has received lots of gifts in the forms of toys and stuffed animals. Today he received two different elephants that he has quickly become attached to. These two are now a regular part of all play time activities!

From a recovery standpoint we are starting to see that Cristian’s immune cells are slowing increasing. This is a sign that his bone marrow is “waking up” and starting to produce cells. While we are only seeing small cell count increases, this marks the first time in nearly two weeks that his body has been producing anything on its own. Now that we have signs of cell count increases we are able to help things along with some additional medications called GCSF. Think of this as applying fertilizer to his bone marrow in order to push things into full gear. We hope to see bigger cell count increases starting as early as tomorrow. Fingers crossed and prayers sent!

Looking ahead we are hoping to be out by Christmas Eve. The “fertilizer” medication that was given today will hopefully increase our odds of making that timeframe. We are praying that God will continue to watch of Cristian as he heals and will reunite our family in time to celebrate the birth of Jesus! Hallelujah!

Today marks one week since we brought Cristian into the hospital. While we are glad that we brought him in when we did, having an extended stay like this is exactly what we wanted to avoid. The doctors said it is not uncommon for kids to have a hospital stay during this last phase since they have no immune system. But for some reason, that doesn’t make this better.

What does make it a little better is seeing Cristian in such a great mood. He really is making the best of the situation and is so happy to see mommy or daddy, whoever is tagging in to take over. His smile says it all

We did see some slight improvement in Cristian’s blood work today as his platelets did not fall as rapidly as previous days. We hope this is the first sign that his bone marrow is waking up and starting to make cells. Unfortunately no sign of any immune related cells. Hopefully tomorrow!

We thank God for helping Cristian and our family through this journey, and this last week. We pray that we are almost out of this darkness and able to step into the light of real normalcy here soon!

Not a lot to report for today. Just like the past few days we are still here waiting for his body to restart making immune cells. The doctors did have Cristian restart an oral antibiotic that he takes normally, hopefully that doesn’t slow recovery.

Cristian was able to spend more time outside of the room disconnected from all the cords. He really does enjoy the freedom and not being cooped up in the hospital room. Even if the time is short lived, he enjoys it while it lasts.

That really reflects how Cristian is doing overall the past couple days. He has had a great attitude and really is making the best of the situation. Look at that smile!

We continue to thank God for all he is doing for our family. We know that we are on this journey for a reason and it won’t be more than we can handle. We do continue to pray for release, and we know it is coming.

Well today was another uneventful day for Cristian at the hospital. He got in a lot of play time and with each passing day he is acting more like he would at home. This makes the fact that we are at the hospital easier, but at the same time anxious to get home because he looks so good.

We are making some progress in that direction. Today the doctors felt it was safe to Take him off of IV fluids during the day because he is eating and drinking normally. If throughout the day Cristian doesn’t drink as much as they would like, then they will hook him up to fluids while he sleeps. This is a wonderful move as it gives Cristian more freedom to move about the room without having to lug around the pole with the IV. Based on this new level of freedom Cristian took a few trips outside of his room to get some fresh scenery, you could tell he is getting cabin fever.

One thing that hasn’t improved yet are his platelets. Yesterday Cristian did not receive any platelets in order to see how his body was able to regulate the levels, a critical item that needs to happen before we can leave. Unfortunately when we did a blood test this morning his platelet levels had dropped. The doctors are still unsure on the cause but still think his body is just working to restart its blood cell production. In the mean time they did give him another infusion of platelets.

Still no sign of immunity cells either. There are no real expectations that his body would be producing those cells yet but we continue to monitor. We will need to see at least 2 consecutive days of immunity cell increase before we can go home. This means we are still unsure on date when we can leave but the doctors expect that over the weekend we may see signs of blood cell production.

Keep praying for our little boy to be healed by God so we may leave this place and have everyone together.

Today was pretty uneventful at the hospital. Cristian didn’t have any additional tests and was unhooked from the monitors for the majority of the day. He was left alone to do what he wanted, which was to play.

And that’s exactly what Cristian did today. He had a very happy attitude and was all over the room. We can tell he is feeling closer to his usual self. One new toy that he received from the hospital was a particularly fun event, his first fishing game! It took a minute or two but he quickly figured out how to hook his first fish. You can tell how proud he was, how proud we all are.

We pray to God gives the doctors the wisdom and knowledge to find out what is causing Cristian’s platelets to keep dropping. We also continue to pray that we can go home soon!

We also hit a milestone today, Cristian received his last dose of chemo for this phase! This marks the end of the Delayed Intensification phase and the battery of chemo drugs that he has been receiving since February. While he will still be getting chemo during the maintenance period, it will be far less. Cause for celebration!!!

Overall Cristian had a great day today, except for the whole hospital part. He woke up well rested and eager to play. In typical fashion he rotated between his favorite hang out spots while playing with his cars and watching cartoons. It is definitely a silver lining to see him still having fun even with all that he is going through.

Today was also a quiet day with regard to any developments. The doctors see continued improvement in his blood tests and we are still fever free. Cristian is still on some IV antibiotics, but this will continue until we are able to go home as it is currently his only real form of protection.

No signs of his own immunity cells yet which is the real golden ticket for this type of stay. While we don’t expect to see them yet due to the chemo treatments, it is still one of the first questions we ask when receiving the results from his blood tests. The doctors aren’t confident enough to provide a timeframe on when they will return as each child is different, but there are no real expectations that we would see any this week. We are still praying that God will bless us with a miracle and expedite his recovery so we can return to having our whole family together.

So for now the wait continues. While we are glad that Cristian is getting the medical attention he needs, this is not how Maria and I planned to use our week off vacation lol. We thank everyone for the support here on the blog and those who reach out directly. We continue to ask for prays so we can get out of here healthy.

Well what we wanted to avoid has happened, last night Cristian developed a low grade fever. This confirms that his body has an infection and just wasn’t strong enough to fight it off before. We are very lucky that we brought Cristian in when we did. The fever came on over a couple hours and once he broke the barrier of 100.4 degrees we administered Tylenol to help keep things under control. We now know that our stay will be a little longer, more on that later.

As the fever spiked the doctors also ordered more blood samples to get a better understanding of what his body was doing. Cristian’s red blood cells had dropped a little, his platelets had dropped a lot, but surprisingly a lot of the other levels which were out of whack before were showing signs of improving. His body was now working to repair itself. Overnight Cristian received red blood and platelets to address those low numbers, but none of the other blood products that he was needing earlier in the day. We repeated the blood level test early in the morning and things had continued to improve across the board!

Based on the results from early this morning the doctors felt comfortable enough the release Cristian from ICU! This is a very positive sign that things are moving in the right direction. It also means that Cristian will be able to get some more uninterrupted sleep because the ICU has vital checks every hour compared to every 4 hours in the “normal” hospital.

Looking at Cristian it was clear that he is feeling better as well. He played all day long and was in a great mood. Every nurse and doctor who saw him today made a comment about how much better he looked. Additionally we went all day without any fevers!

From here it’s a waiting game for his body to recover. For us to go home he will have to show that his immune system is able to restore itself and increase for at least 2 days. Since his body just started being able to fight the infection, that could take a week or more. On top of that we have his lasted planned chemo treatment for this phase set for Tuesday. The doctors are currently planning to move forward with this treatment because it does not impact the immune system.

We are extremely thankful for everyone’s support throughout our journey and this latest bump in the road. We thank God for keeping our family safe, we know this is part of his plan and there are greater things ahead for Cristian.

Overnight was fairly eventful once we got settled in the ICU, but there was still little sleep. As part of being in the ICU for close monitoring, that means close monitoring via frequent checks of vitals in the room. While we are somewhat comforted by the level of attention Cristian is getting, it does make sleep difficult.

Nonetheless Cristian woke up early (5am early) but surprisingly had energy. He was up out of bed playing with toys and eventually sat on the windowsill. He did briefly complain of nausea so we gave him some meds for that. Good sign is that he went all day without throwing up. Another good sign is that he had a little bit of an appetite and ate some snacks.

Throughout the day they continued to run tests to try and identify what’s causing the issues for Cristian. Via blood tests and an ultrasound we were able to confirm that his pancreas looks normal. We also did another ultrasound and confirmed that he has no clots in his upper body. Throughout the day the tests showed that his red blood cells were holding steady which is really good news, but his platelets were still dropping. By the evening his platelets were back down the levels that they were when we arrived yesterday so they did another transfusion.

More good news is that we still have no signs of infection such as a fever. The doctor did explain that because he has virtually no immune system at the moment that he could still have an infection but his body isn’t able to fight it off and develop a fever. As a precaution they have started antibiotics. Hopefully they are not needed.

As we get to the end of the day it is still unclear what is causing the issues. It is possible that the vomiting was a result of being anemic (very low red blood cell count) but that doesn’t account for the platelet behavior or the other levels that are out of balance. By tomorrow evening we should have results from blood tests to help rule out infections, but there are still other possible sources for these issues.

We are going to stay in the ICU for close monitoring overnight and into tomorrow. We will be here until Cristian isn’t needing so much external help and frequent infusions of blood products. Since we don’t know the source of the issues, we also don’t know how long it will take to get to that step.

This also means we have an unknown timeline to go home. First step is to get out of the ICU and back to the “normal” hospital beds. From there we will have additional monitoring based on what we determine to be the underlying source of these issues. We hope to know more soon, but continue to pray for quick healing of our baby Cristian.

Following an ok week since our visit on Monday, Cristian woke up feeling not well today. He complained of belly pains a bit and has thrown up numerous times before noon. Having seen these symptoms before and being cautious to make sure he doesn’t get dehydrated it was clear that we needed to head to see the doctors.

Once we arrived at the hospital and got checked in the doctors did a test to check his blood levels. They also started running fluids to make sure that Cristian was dehydrated from the vomiting. Blood tests came back fairly quickly and showed that many of his levels were low and begin prepping for transfusions. We knew this was a likely scenario given the intense treatments he is undergoing, and expected that this would be a “top off” type visit to get Cristian back on his feet. Cristian was set to receive platelets and red blood cells. The platelets arrived quickly and were complete within an hour or so.

By the time the doctors were ready to start the infusion of red blood cells it was late in the afternoon and close to the time they were closing the clinic portion. That means we had to be admitted to the hospital section of the facility where they would start the infusion. A few hours later they checked his blood levels to confirm that things were in better shape but unfortunately discovered that his levels were now lower

Following the results from the last set of tests the doctors are transferring Cristian to the ICU for monitoring and more tests. This is a precautionary move in case future tests come back with lower numbers.

At this point the doctors are unsure on what has cause his blood levels to drop so quickly or the vomiting. On the plus side there are currently no signs of infection, which is wonderful. If he does develop an infection then that will extend the length of our stay here.

We are praying for quick healing and release. We know that God is in control and is guiding our family through this storm.

Over the past week we have continued to give Cristian the chemo at home as directed by the doctor. He had been holding up pretty well with high energy and great attitude, until we got to the weekend. Come Sunday Cristian had stopped being hungry, and started complaining of nausea. Things got so bad that he didn’t really want to play and spent most of his time laying down in his favorite comfort spot. Monday we started noticing spots on Cristian’s body which are a called petechiae, a symptom of low blood platelets.

Unfortunately these symptoms are planned based on the high amounts of chemo that Cristian is receiving. His blood counts are very low across the board which impact not only immunity (ANC), blood clotting (platelets), and energy (red blood cells). We have been tracking these numbers and seen a steady decrease over the past months. Again this is planned and the ultimate goal of this phase.

Seeing Cristian getting worse and wanting to make sure he wasn’t getting into a dangerous territory, we called the dr to see if we needed to come in early. We have a planned weekly appointment for the following day, but wanted to be safe. Based on a conversation with the nursing staff and dr, it was determined Cristian was still in a safe spot based on his symptoms. Specifically we were told that as long as Cristian doesn’t have nose or gum bleeding, headaches, fever, or trouble waking from sleep, then we were safe. A couple hours later and following bath time we noticed red spots on his teeth near the gum line. This was a sign we were told to watch out for, so we headed to the hospital instead of waiting for the following day.

Once we arrived the staff did a quick visual inspection of Cristian and was able to determine that he would need platelets based on his bruising and petechiae. We proceeded to do a full blood panel to see what else he needed, and determined that he needed red blood cells as well. To top things off we went ahead and administer the chemo that Cristian would have received at our scheduled appointment. This made for a long impromptu appointment, good time for a nap.

By just before 6 we had everything wrapped up and we’re heading home. At that point Cristian was already showing signs of improvement compared to when we came in that afternoon. His energy and attitude was better and his color had returned. The bruising and spots should clear up over the next day or so. Once we arrived home Cristian was pretty relaxed and went to be early. We look forward to a good day tomorrow, and we don’t have to go back to the hospital!

This coming week should be very low key for us. No planned meds at home, including no daily chemo. This break should allow his body to rest and begin recovering until we go back next week. We are going to be watching for symptoms like we saw this week, which mean his body would need another infusion. We thank God for keeping us out of the hospital and returning us home safely! We are so thankful to have our family together!