The past couple days have been fairly uneventful for Cristian, as we wait for the doctors to release him. All of the tests they have performed thus far have returned no infections since the first day which is great. Unfortunately Cristian has continued to have low grade fevers each day requiring Tylenol. This reoccurring fever has the doctors looking for more causes (thus more tests) to determine the source. Today Cristian had a CT Scan, Ultrasound, and a tiny camera inserted up his nose to search his nasal cavity for fungal growth. Luckily all came back clear.

This leaves the doctors to believe there are 2 possible causes, delayed fever from the initial infection or a fungal growth that isn’t showing up on the tests. For the first scenario the plan is to “wait and see” if the residual fevers go away on their own. For the second the doctors have proactively started an IV anti-fungal med which he will get until discharged.

For discharge there are a few requirements.

1. Cristian will need to complete a 7-10 day treatment of IV antibiotics. We are currently on day 6.
2. Cristian will have to go 24 hours with out any fever.
3. Cristian’s neutrophil counts (the part of your white blood cells that actually fight infections) will need to be above 500 or at least steadily rising. Currently his count is 0.

Based on our current progress, we meet 0/3 requirements. The latest estimates from the doctors is that we will be here until at least early next week.

In the mean time, Cristian had a pretty good afternoon yesterday and a good day overall today. He is not eating anything which we don’t like to see but the doctors say that is expected given all of the antibiotics he is receiving. Hopefully in the next couple days his appetite will return on it own, or we may begin giving him an appetite stimulate.

We know that this process is all part of Gods plan and it is happening for a reason. We pray that we will quickly round the corner and be out of here ASAP. We are also praying that in the meantime Cristian continues to have good days and begins eating in his own.

Thank you all for the support and prayers you have been providing. Please don’t stop!

Following Cristian’s fever on Saturday we have remained in the hospital. The morning after admission they were able to determine that he had a bacterial infection (some long medical name I can’t remember) and started a specific antibiotic to treat it. Based on this finding the doctor said we should plan to be here for 7-10 days to ensure that the infection is completely out of his system and his port.

While this isn’t how we planned to spend our weekend, or our work week, we are glad that we brought him in to get checked out instead of hoping it would pass at home. Seeing Cristian continue to not feel good here in the hospital does get us down, we know he is in good hands.

This will be an interesting week for all of us. Mimi, Gpa, and Aidan are set to leave tomorrow without seeing Cristian. Maria and I are going to be rotating who is at the hospital, trying to get work done. All the while we make sure Cristian has everything he needs to get through this as quick as possible. Cristian is scheduled to have chemo tomorrow but we are speculating that they will delay a week since his body is already working to fight off whatever this is. All of this, and we are sure Leena misses her play buddy every day as well.

We ask that everyone continues to pray for Cristian to have a quick recovery from this and for God to get him home. We know this is part of his plan, we just pray that we are almost done with this part.

We had a good start to the Memorial Day weekend as Mimi, Gpa, and Aidan showed up. Cristian was in good spirits playing all day yesterday. This morning, he went outside to play. He stopped after about an hour and said he was tired. He went inside and laid down. We took his temp and it was 100. Fast forward past his nap, it was at 101. We took him to the emergency room and his temp was 102. They are giving him a round of antibiotics to prevent sepsis.

Please join us in prayer. The Lord said any two that agree on any one thing it shall be done in his name.

We appreciate the prayers. We know we will be here a couple days based on past experience. We just hope and pray for it to be painless and easy recovery.

It’s hard to believe that tomorrow marks 3 months since our family was changed forever by Cristian’s diagnosis. We are thankful that we have access to medical care which is saving Cristian’s life, but that does not mean this has been easy for any of us. Each day has presented us with new challenges, and occasionally rays of sunshine where we are able to see our little boy before all of this started.

Over the past week Cristian has been receiving chemo on a daily basis, either at the hospital for our weekly visits or via home administered doses. This has had an impact on his energy levels and has him looking a little pale. Today’s appointment uncovered that he has lost almost 2 lbs in the past week despite being on a twice daily appetite stimulant. Additionally Cristian did have slightly low hemoglobin counts in his blood test, which resulted in a 3 hour transfusion of red blood cells on top of the scheduled chemo.

Thankfully during this past week Cristian’s spirits have remained high and he has actually been eating more than prior to our hospital stay. He has had an appetite for a wider variety of foods as well including chicken nuggets and milk shakes, both of which he hasn’t asked for in about 6 weeks.

We are trying everything we can to keep him eating. I am still doing the occasional trip to Whataburger at 7am with him to get french fries, but he rarely eats them. We think it is more the car ride that he wants. He has discovered that of all the fast food places we go to, Raisin Canes has the best french fries (I think he may be right).

We have been praying for Cristian on multiple areas. Overall health, shortening of treatments, weight gain, appetite, nausea, hair loss, energy levels. We have seen improvements in most of the areas and thank God for the work he is doing. We also thank all of you who are praying for Cristian as he goes through this.

For the next couple weeks his treatments will be the same as what we had today, minus the blood transfusion we hope. We are also continuing administer the chemo daily at home. Following the delays from the hospital visit and low blood counts, we are set to start the new phase of treatment June 8th. This new phase will be a whole new bailiwick and include things we aren’t looking forward to.

Not going into this next phase of treatments and stopping the chemo is the thing we are praying for the most right. Any of you who wish to agree that these treatments are no longer needed because God has healed Cristian, we ask that you pray on this along with us.

Following our discharge on Sunday Cristian has been enjoying himself with all the comforts of home. His toys, his comfy relaxation spots, even his little sister have all been a welcome change. He is active and even a little hungry, he had a milkshake today! It’s really great to see.

As part of his discharge there was a need for continued monitoring to ensure he does not have any infections in his system. To check for this, we have gone back to the hospital each morning for a quick blood draw. Today we heard from the Dr that his Neutrophil levels (his bodies ability to fight off an infection) have more than doubled what they were in the hospital! This is amazing news and we can only give credit to God for this rapid improvement. Because of his drastic recovery he no longer needs to come in for frequent blood draws, or take his twice daily antibiotics. Talk about a sigh of relief and jumping for joy. Maria was literally running around the house yelling she was so happy.

The is afternoon Cristian asked to go outside and explore for a bit. Day by day he is getting stronger.

Thank you to everyone for all the prayers and support, they really do work! Please don’t stop as we are asking God for a fully recovery prior to the prescribed 3 year treatment plan.

11am could not come fast enough. That is the time when we were set to be discharged from the hospital and continue the antibiotics from home. Luckily Cristian was able to sleep in a bit, even with the nurses frequently coming in to check him. This meant that by the time he woke up and was ready to start the day it was 8am. 3 hours to go.

When the Dr finally stopped by to go over the discharge information things went as planned, mostly. There was a requirement that Cristian take the first dose of the “at home” antibiotic prior to leaving. Even though Cristian has been taking medicine since the start of this ordeal, it has not gotten easier. If anything our tricks to get him to take the medicine are fading in their effectiveness. This morning was no exception and it took over 30 minutes before he finally downed the meds and we were on our way.

Once we got home Cristian decided to lay down on the living room carpet and watch his tablet. This is one of his favorite spots in the house. He was so exhausted from this stent that eventually fell asleep on the floor. Not long after his sister woke up from her nap, and once she noticed he was there she sat down next to him. You could tell that she missed her buddy!

The remainder of the evening was very low key. We stepped out briefly to pick up Cristian’s prescription as well as some dinner. As expected, Cristian elected for some french fries, but didn’t eat that many. We are hopeful that the appetite stimulant meds which he is now taking will help his hunger return (that just means one more medicine to fight him over though).

The last few days have had a lot of prayer, a little sleep, and ended in some relief. We will be returning to the hospital several times this week for follow up checks, but at least we will return home each time. We will be praying that the check ups wrap up quickly so he doesn’t have to go through as much. We ask for others to pray for this as well and for Cristian to be healed overall.

Today kicked off early with a 6am blood draw to test levels which left Cristian wide awake and ready to get started. After the nurses left with their sample he asked for his tablet and a toy race car, as well as the movie Cars on TV (naturally). This was how we spent most of the day.

A little before lunch time we had one of the hospital staff who sees him for our “normal” visits pop in to see how we was doing and to drop off a toy. The group here does a very good job of trying to make these interactions less dreadful by always making sure he leaves with a toy or prize. Today he got a big toy track and dinosaur set which he immediately had me open and assemble. He really has fun playing with this and I think we can get him more toys like it.

In the afternoon the Oncologist stopped by to discuss the results of the blood tests and our path forward. They would like to keep Cristian until Sunday for continued monitoring. This extended stay is to allow for further blood tests (cultures) to mature in order to confirm that there are no infections in his system. Additionally the tests show that his neutrophils(the part of your white blood cells that actually fight infection) are very low, which we knew from our normal Tuesday visit, and they would like to see those improve prior to discharge. While we continue to monitor for improvements Cristian is receiving antibiotics as a precautionary measure. As long as his neutrophil count does not drop further between now and Sunday we will be able to go home then.

Following this news we did a parent swap for the evening. This gives us each some time with the other little munchkin as well as an opportunity for a good night sleep (for one of us).

While doing the swap, Maria brought our home thermometer to the hospital so we could check it’s accuracy compared to the hospital thermometers. Since arriving at the ER yesterday Cristian has not had a low temperature, nothing below a 97, which called in to question the quality of our thermometer. The nurse came by to take Cristian’s temp for her normal rounds and she logged a 97.7. We immediately (within 5 seconds) took his temp with our own thermometer and it read 96.7. This means that our thermometer is reporting low by a whole degree. As you recall from yesterday’s post this whole ordeal started with a reading of 95.9 on our thermometer. Now with this new information we know that he really had a 96.9 temp, and this trip was not necessary. UGH!!!

On the flip side we appreciate the precautionary steps that the hospital is taking to make sure that Cristian is healthy. We know that his immune system is extremely weak at the moment and we really can’t be too careful.

Thank you to everyone who has reached out on here or directly to us with a show of support and all the prayers. While this has turned out to be more of an enhanced monitoring visit, the prayers and words of comfort/encouragement help us get through this episode. Thank you!

We look forward to leaving on Sunday and getting Cristian back to all of his other toys.

And in case you were wondering, yes we’ve already ordered a new thermometer.

The past 2 weeks have been mostly good days for Cristian. He has been active, playful, and generally a good attitude. Not having the chemo administered daily at home has allowed him a slight reprieve to recover.

However over that same time he has had a very limited appetite. His weight has dropped slightly, some of which was expected following no more steroids. The Dr prescribed an appetite stimulant for Cristian. We use it as motivation for him to eat or take meds, he usually chooses to eat. This has some success but not foolproof.

Yesterday Cristian was very fussy and low energy in the afternoon. Seeing how this wasn’t normal behavior we took his temp, 96.7. We have been instructed that anything below a 96 is a trip to the hospital. Luckily as the evening went on his temp came back up over 97.

Today Cristian again was fussy following nap time, but this time his temp was 95.8. We gave him some water and held him a bit to comfort him, hoping his temp would rise. After about 5 min he was up to 97 again. Unfortunately 10 min later he was down to 96.1. That’s when we made the call to head into the hospital per instructions.

Upon arrival they checked Cristian over including a blood draw and urine sample. Following the test results and a discussion with the oncology team, they decided to administer an antibiotic and admit Cristian for observation. They want to ensure that his temperature stabilizes and that the blood counts improve.

Luckily he has his tablet and is able to tune out most of what is going on around him. We are planning to be here for 24-48 hours, when they predict his blood levels will increase to the desired levels.

We are praying for a quick recovery for Cristian on this stay and that we are able to leave tomorrow. We ask that everyone following our journey do the same so he can get back to the comfort of his own bed!

It’s been a few days since we updated everyone on how Cristian is doing, so want to pop in and loop you all in.

This week we start a short break from home meds, except for weekend antibiotics. It is such a relief to not be giving Cristian pills or shots, just allowing him to enjoy being a kid. This break will last for 2 weeks, and we’re going to soak it in!

Speaking of Cristian enjoying being a kid, we are seeing more of that each day. Bath time is a fun event again, playing with ALL his toys happens daily, and he is asking to go outside a couple times a day.

There are still a few things that haven’t returned yet like running and jumping, but he is working on them. The other big aspect that hasn’t returned to normal is his eating. Coming off the steroids and combined with this current round of chemo, loss of appetite is expected. Currently Cristian is eating very little each day, sometimes only half an apple. He is drinking plenty of fluids including water and juice (apple and orange).

Part of the challenge is that his taste buds are impacted by the chemo and what used to taste great to him (chocolate for example) are no longer tasty for him unfortunately. We are keeping track of his weight and so far there is no concern. If his weight does get too low then we may have to introduce an appetite stimulant.

Our next round of home treatments will kick off in about 2 weeks. This will restart what we have done over the past 2 weeks including home shots a few days a week.

Everyone’s support and prayers throughout this journey are appreciated. Cristian’s recovery is directly linked to the support you all are giving. Thank you!

Just want to send a quick thank you to everyone who has been following Cristian’s journey and supporting us. We all know this is hard, but with all the love we are receiving from everyone, it does make things a bit easier.

Today we got outside a bit thanks to the Easter Bunny who left colorful eggs in the backyard! Cristian was excited to go outside and get the eggs, he hasn’t wanted to go outside since getting home from the hospital. The Easter Bunny must know him well because his eggs were filled with cars!

We hope everyone has a wonderful and safe Easter. He is risen!