As we left off on our last post Cristian was doing fine with the treatments and was up playing around the room. We were fortunate that this high energy and generally good attitude continued as we got further along with the treatments. The plan was chemo for 24 hours, and introduce the “rescue” medicine at hour 42 to start help getting it out, then follow up doses every 6 hours until he clears. So far so good, on what is our last planned hospital admission to treat his leukemia.

As Thursday rolled around we approached the “make or break” tests for us to go home on time vs needing to stay longer. The determining factor here is the amount of chemo still in Cristian’s body and if the levels are low enough to be safe. The first test did not come back with good news, he was barely above the level needed. This resulted in our stay being extended until his levels were even lower than the normal release threshold. We continued to give fluids and medicine to help get the chemo out ASAP. The longer the chemo is in his system, the greater the chances are that he will get mouth sores. These higher than acceptable levels would continue for a few more days…

We finally received good news yesterday(Saturday) evening around 7pm that his chemo had dropped to a safe level. This means we now had light at the end of the tunnel for this stay and should be leaving in a few hours. Normally we would be released now since he has cleared, but on top of the chemo this stay Cristian is also receiving two additional meds. One is an immune booster that he receives monthly, and another is an antibiotic which he also receives on a monthly basis. Combined they will take about 4 hours to complete.

By the time all was said and done, it was 12:45am when we were finally released. Luckily Cristian had fallen asleep hours earlier and slept through most of the discharge process. He did wake up once we got in the car and asked to go home and see mama. Upon arrival he did not want to go to bed and instead asked to see mama who was awake anxiously awaiting our arrival. We got him settled in and by about 1:30am we were all in bed working to go to sleep.

Despite the midnight adventure we had in getting home, the day started at its normal early time. As Cristian says “the sun is up so it’s time to wake up”. (I really need to install blackout coverings in his windows, at least for the weekends haha) With everyone up we had a wonderful day together as a family. The kids were happy to be able to play and spent a good amount of it together. This is how it should be!

While this stay didn’t go as we had hoped, we are glad it is done. We are praying for no mouth sores following the treatments. We are also praying for some miracle around the next phase which is set to start in a couple weeks and be very taxing on Cristian (and the rest of the family). Thank you everyone for all you are doing, please don’t stop now!

Today we kicked off the last dose of chemo for this phase in Cristian’s treatment and what will hopefully be our last admission to the hospital! We arrived at the hospital this morning for blood work, and once that came back within required levels we began moving forward with treatment.

A part of this treatment Cristian will be admitting to the hospital for approximately 2 days. As part of the admission he had to take a Covid test. Thankfully the test came back negative and we will take another tomorrow to confirm. From the hospital perspective Cristian is still Covid positive until he has two consecutive negative tests. We haven’t tested him in several weeks, so it will be nice to have this part officially behind us.

So far this has been an easy episode for Cristian and he remains in high spirits. He is up and about playing in the room and overall in a happy mood!

Now we wait for the chemo dose to be complete and then start the medicine to get it out of his system. Because Cristian had the mouth sores on the last dose, we are going to give him more of the medication that helps his body get rid of the chemo. We want to do whatever we can to avoid seeing Cristian in pain from mouth sores again.

We look forward to getting out of here on Thursday and having everyone back home before the weekend. We thank God every day for everything he is doing for Cristian and our family. We thank you all for the continued support and prayers.

It’s been a little bit since our last update and we’ve got a bit to unpack. Let’s dive in!

Following Cristian’s last chemo treatment he had developed mouth sores which were causing him pain while swallowing. These hung around for about a week but have subsided. Cristian is now back to eating and drinking like normal, glad that’s over!

Last week we had a surprise visit from Mimi who came in for my birthday. Both Cristian and Leena had such a wonderful time with Mimi. They enjoyed jumping on the air mattress, swimming in the pool for the first time this year, and even setting up a new (to us) playground for the kids in the backyard.

This morning we went to the doctor to receive the last dose of chemo (and 3 days stay) as part of this phase. As with every time Cristian is set to receive chemo, they did blood tests to make sure his body was strong enough to handle the chemo. However, similar to last week, Cristian’s body is not ready for more chemo so he gets another week to rest. This also means we get another week with the entire family today.

While at doctors this week they changed some of the meds that Cristian has been taking on a weekly basis. Previously Cristian was taking 4 doses of an antibiotic to help protect him from pneumonia. This drug has a known side effect of lowering the immune system in some children. After reviewing Cristian’s blood work trends, they have determined that he is in that small group. Moving forward, Cristian will not be taking medicine every weekend, instead he will receive a monthly infusion of an alternative medicine that does not have the immune side effect. This means less meds, which is always great to hear!

We also got some amazing news about our future treatment phases from the doctor. Because Cristian had a bad reaction to some of the chemo in the past, they are going to completely drop the last phase of chemo! This means there is only 1 phase left (not counting maintenance which will last 18 months) after we complete the last treatment in the current phase.

Praise the lord for all the great things he is doing in our family. We know he is the one in control and he deserves all the credit. We will to pray for continued blessings and safety for our family.

Sadly, as the title says Cristian has developed mouth sores. We first noticed a change in his eating and drinking on Saturday when he would say that something “wasn’t good”. We didn’t think that much of it because Cristian is a picky eater. Unfortunately by the time Sunday rolled around he was barely drinking (even water) or eating anything.

In this situation we are not only concerned about the pain he may be experiencing, but also becoming dehydrated which leads to other issues.

Come Monday (today) morning Cristian was in a bad state. He had black circles around his eyes, a little blood on his lips when he woke up, and almost refused to talk. Eating and drinking was completely out of the question, and he would lash out if you asked him.

Seeing that Cristian was in pain and not improving. We sprung into action and took Cristian to the hospital. Luckily the normal office (CCBD Clinic) was open and we didn’t have to go to the ER. As we arrived at the hospital the nurses took his vitals and we began the process of getting him ready for a blood draw and IV fluids. Because he was in such pain, and a bad mood, he had a tough time with the access of his port.

Luckily this was exactly what Cristian needed. Within 5 minutes of starting the fluids there was a noticeable change in his well-being. Instead of head shaking, pointing, and growling, Cristian was talking and playing this his cars. He even asked to FaceTime with mama, which was a relief for her to see him improved.

We received the results of the blood tests and everything there looked great. The doctors looked in Cristian’s mouth to try and see any sores but could not. Based on how Cristian was complaining of pain, they believe that he has a sore (or multiple) in his throat which makes swallowing painful. Now the goal is to address the pain so Cristian can drink on his own. If we cannot manage the pain then Cristian would need to be admitted to the hospital for more IV fluids until he can drink on his own.

We gave Cristian a dose of morphine for the pain and within 15 minutes he was able to take several drinks without any complaints of pain. Goal achieved, we wouldn’t be admitted to the hospital and could go home. To help up continue to manage his pain they prescribed a couple medications for us to use.

For the rest of the day we worked to have Cristian drink lots of fluids. We did have to administer pain meds (and holy water!) once but he was a champ and drank lots of water as well as ate a good amount.

We are now in the waiting game for the sores to go away. They could continue for a few days and we will manage them with the meds we have, while continuing to push fluids.

Please pray for Cristian and that his mouth sores leave ASAP! It’s no fun seeing him in pain or having to give him more meds.

After a few days in the hospital we are happy to have been released today and have everyone back home together. Throughout the treatment Cristian had a great attitude and was up playing most of the time. He was in such a good mood that he was talking to several of the nurses, compared to the growl responses that he had given on past trips.

Cristian finished the last of his meds early this morning and we were released shortly thereafter. When we got home it was a sweet reunion with his sister Leena. They were so happy to see each other, after a quick hug they immediately ran off to begin playing.

We are now of watch for mouth sores, changes in appetite, temperature swings. Any of these items would mean some type of situation that needs attention back at the hospital. On the plus side Cristian did very well with the treatments this time around (and previous treatments) so we don’t expect issues.

We are set to return to the hospital for round 4 (final for this phase). While there are phases after this one, it will feel very good to close out this one and be one step closer to crossing the finish line.

The prayers from everyone are working and we thank you all for the support and love. Please keep Cristian and our family in your prayers that we will be done with this chapter of his childhood and back to a normal life.

After several weeks of Cristian’s blood levels being too low to resume his treatments, this week his body was able to recover to a safe level. This round of chemo includes a procedure (lumbar puncture) and then high dose of chemo of 24 hours, followed by monitoring until the chemo has left his system.

With Cristian’s Covid status the hospital process is that his procedure will be last in the morning. This is done to limit the exposure of other kids and to attempt to limit the spread of Covid. Unfortunately for Cristian that means he has to fast for an extended period. It was almost 12:30 before he was able to eat, and he was very hangry at that point.

Following the procedure Cristian was very groggy from the anesthesia for a good portion of the afternoon. He also had trouble keeping anything in his stomach, including water. He spent the evening throwing up several times but had no other discomfort. The doctors gave him some anti nausea medicine, but it didn’t seem that effective.

Before starting this round of chemo we need Cristian urine levels to be within acceptable ranges for hydration and PH. This hasn’t been an issue in previous stays and we have been able to start the chemo almost immediately after the procedure. This time however took lots of extra fluid to get his levels in line. We weren’t able to start the chemo until very late into the night. This doesn’t impact his treatment, but will delay how long we are here by a day.

We appreciate everyone’s prayers and support! We couldn’t do this without all of you and God’s grace in healing Cristian. Please pray that these treatments go smooth with no mouth sores and that we get to go home ASAP!

The past week or so has been really good for our family. Cristian has continued to be asymptomatic for COVID-19 and the rest of the family is doing well.

We took Cristian to the doctor for a blood test to see if his body was strong enough to handle chemo. Cristian did amazing with his blood draw this time around, no crying and he even helped push some of the fluid flush through. He was such a big boy, we are very proud of how well he is taking his treatments.

At home Cristian has been acting like a normal four year old. He has had a great attitude, lots of energy, and has been playing with his sister all day long. As parents we love seeing Cristian like this and wish we could be like this all the time. His appetite has returned and his hair is even regrowing!

We appreciate everyone’s support and prayers for Cristian and our family. This has been a hard journey and while we know it’s not done, we are enjoying this brief reprieve. We ask that everyone continue the prayers and support.

Last week we checked Cristian into the hospital for the second round of chemo, part of the standard procedure is to administer as COVID test. Cristian has had several tests thus far in his treatment and they have all been negative. Until last week. This was a shocker result for us and something we expected to always come back negative. Cristian rarely leaves the house, isn’t exposed to strangers, is watched during the week by his grandmother in our house. Additionally Cristian had no symptoms of Covid or any other virus/infection.

All of these things made us suspicious of the test results, so we had them run the test again. This second test was sent off to an outside lab and we wouldn’t receive the result for the next day. The offsite Covid test results came back negative, which was our expectation. The doctors were less convinced by the negative test than we were. Having any positive test meant that Cristian would be treated as a Covid patient.

Before starting the chemo treatment we discussed with the doctors about any safety concerns. The doctors indicated that there have been numerous patients who have Covid and received chemo over the last 18 months without issues. They saw no risk in moving forward, we decided to follow their judgment. Cristian responded well to the treatments and hasn’t shown any complications.

Fast forward to this week and Cristian is still doing well. The rest of the family, not so much. Over the weekend Maria experienced a severe migraine and has lost her sense of taste/smell. Monday of this week (the day we came home from receiving hydration) I had severe migraine as well and overall weakness. By Tuesday Maria’s mother who watches the kids during the day was developing a head ache. Leena was looking a little off, but still had her normal energy levels. It was spreading.

Since all of the adults were going down for at least a couple days and we still have kids to take care of, it was time to call in reinforcements. We are extremely fortunate that my mother was able to come and help while we all get back on our feet. The next day Mimi arrived and has allowed us to rest a bit. Since then the kids have been having a blast with Mimi and it’s great to hear the laughs/giggles on the house.

Maria is starting to feel better, and her mother is doing well overall. I am still weak but hope to be back at 100% by the weekend.

We ask that everyone send us an extra little prayer to get back on our feet quickly, and thank him for Mimi’s ability to help.

Following last nights admission to the hospital the doctors continued to give fluids of different types to Cristian in an effort to get him back to his (new) normal self. To make sure that things were improving and to inform any changes that were needed, several blood and urine tests were taken.

As the sun broke the horizon Cristian was feeling much better than the day before. He had energy to move about the room and observe the nearby construction site from his favorite seat.

Throughout the day we worked to get food and as much liquid into Cristian as we could to demonstrate that it was safe for us to leave. Around 2pm the doctors came in and said the bloodwork had normalized and given his intake up to that point we are good to go home! We do need to come back later this week for a follow up, but at least we will be home until then.

Upon arriving home Cristian went straight for his toys and began playing with near full energy. Such a good sight to see!

We thank God and everyone for all the support and concern we are receiving. Please don’t stop now because there is still a long road ahead!

Since leaving the hospital on Friday we have been waiting for Cristian to return to his old self and resume playing with his toys and Leena. However that hasn’t been the case as the weekend drug on. Cristian has continued to be low energy, not eating anything, and barely drinking. Poor guy has even had issues keeping food and medicine down. Luckily we have not had a fever.

Going the cautious route we decided today that we should speak with the doctors about what we see in Cristian and get their recommendation. After a brief phone call the doctors expressed their concern that Cristian may be dehydrated and asked that we return to the hospital for them to check.

Shortly after arriving and seeing the doctor, they got Cristian all hooked for a blood test and to start giving him fluids. From what the doctors could see and based on what we have told them, dehydration seems to be the source of what is keeping Cristian down.

After an hour or so of fluids (and anti nausea meds) Cristian had noticeably improved in energy and appearance. Over the next 2 hours Cristian had drank more than he had the entire day, and it was about 5pm at this point. All good signs.

The doctors decided that they too would take a conservative approach to treating Cristian and admitted us for overnight fluids and observation. We will have a few additional blood draws over the next 18 hours and hopefully be going home by mid day.

We ask that everyone pray for Cristian’s quick recovery from this dehydration so we may return home. We’ve spent too many days here recently.